This has been a crazy 11 months and I often ask what Ray would have thought about the pandemic and now the storming of the US Capital. I have been rereading some of Ray’s journal entries and find comfort in his words. One thing I do know for sure, Ray wanted his story to be shared with those that were seeking information and possibly answers. He never thought he had the answers but thought his story would shed light on matters not spoken of easily; death and dying. Once Ray lost his ability to speak, I became his voice. Through presentations to medical students, talks to charitable organizations, and interviews covering dying, death, ALS and caregiving, I have been able to continue his purpose. I invite you to this webinar featuring the documentary R.S.
Thank you for your continued interest in Ray’s blog
Rae Spooner (the other Ray)
Dear Blog followers,
I’d like to invite you to “Hope and Dignity: Ray Spooner’s End of Life Story,” a film screening followed by a discussion. Ray Spooner died of ALS in 2016, and a film called “R.S.” was made about his determination to finish his life on his own terms in the face of a debilitating disease.
His widow, Rae Spooner, will present the short movie about Ray, and attendees will be offered an opportunity to share their reactions to the story. Sponsored by Compassion & Choices Illinois, this screening is scheduled for Thursday, January 28 at noon.
WHAT: A film screening of “R.S.,” followed by a discussion WHEN: Thursday, January 28, 2021 from 12:00 p.m. to 1:30 p.m. CT WHERE: Via Zoom – register here
The COVID-19 pandemic has forced us all to think about our own mortality, and Ray’s story provides an example of how to face the end of life with grace, making every moment count. This screening will give you the opportunity to talk to other advocates in the area, share your personal stories and find out what you can do to help improve end-of-life care for all Illinois residents. Click here to RSVP I look forward to seeing you,
Amy Sherman Midwest Campaign Manager Compassion & ChoicesCompassion & Choices 101 SW Madison Street #8009 Portland, OR 97207 United States
August 8, 2016. Urbana, Illinois. I died. Presumably from respiratory failure. An obituary is generally a short account of someone’s life but if you have read the blog you know my story so I’m not going to repeat it here. But it occurred to me that someone newly diagnosed with ALS may stumble across my little corner of the interweb looking for advice. The only advice I would offer that person would be the same advice I’d offer anyone. It may sound simplistic but it can change your life if you live by it. And that is if there is something that is important to you to do or say, do it. Do it now.
That’s all. It’s been a hell of a ride.
Peace, love and midwives
Oh and one last thing. If you’re inclined to make a charitable donation, the following two organizations are close to my heart.
There are many ways to measure the length of a journey. Duration in time or distance traveled are but two. Yet distance measured on the map is somehow just not the same as distance measured on the ground.
I do not have words to adequately describe what it’s like being in my body at this point. All the things I most dreaded when initially diagnosed have one by one come into being and have simply been incorporated into our daily lives without fuss or fanfare. Yet the love and tenderness I’m shown on a daily basis by family, friends and community (irreverent as it can be at times) make it all relatively easy to bear. And that is a gift for which I also do not have words to adequately express thanks. That being said I’m going to give it my best shot.
August 12, 2001. Mt. Fuji, Japan. Bike riding isn’t the only activity I’ve undertaken in order to raise money for a good cause. In 2001, a group of ten of us set out to climb Mount Fuji to raise money for Planned Parenthood. Our goal was to see the sunrise from the summit of the mountain so we began hiking the afternoon of the day before. There was a steady drizzle and we were surrounded by clouds so there was a possibility that for all our efforts we might not see anything at all but we were only in Japan for five days and this was our only shot. Despite the lack of visibility there was never any question about the path because hordes of people, young, old and entire families were also making the trek. But as we got higher the crowds began to thin out. There were lodges at regular intervals along the way offering everything from food and souvenirs to canisters of supplemental oxygen. At one point I recall passing a middle aged man sitting by the side of the path breathing deeply from an oxygen mask held in one hand while holding a cigarette in the other. I thought, you know, I have a nursing supervisor who would probably have a thing or two to say about that.
July 6th, 2016. Urbana, Illinois. I stood in the hall of our home at the foot of the staircase. Waiting for the reassuring feeling of the stabilizing hands of Rae or one of the kids on either side of my torso before setting out. This isn’t a trip I would attempt solo anymore. Once I have the support of someone behind me I generally stare at my feet for a while as I gather my strength. No one ever rushes me. When ready I lift my right foot onto the first stair and begin. We have lived in this house since 1998. Yet prior to this year, had you asked me how many stairs there are in it I could not have told you. There are fifteen. Fifteen stairs that separate me from the bathroom and our bedroom. The first seven stairs navigate a 180 degree turn and as such have a wider surface area. They also pass the window that looks out onto the patio. If I was going to take a break for supplemental oxygen this is where it would be.
As the light began to fade we stopped at one of the mountain lodges to eat and dry out. I’m not sure if it was the actual heaviness of the rain or the material the roof was made of, but knowing I had to go back out into it, this was one of the few times in life that I didn’t find the thunderous sound of rain soothing. At around 2 a.m. we headed back out onto the trail. Thankfully all the clouds were now below us and above there was nothing but a clear starlit sky. Mt. Fuji is a holy mountain and has been the object of pilgrimages for centuries. It is 12,389 ft. high and as we approached the summit my breathing was becoming more labored. It was still dark when we reached the rim of the mountain where, much to my surprise, we were greeted by a ghostly apparition. There, standing alone on the black volcanic rock, was a vending machine. It shimmered in the darkness, silhouetted against the black moonless sky. It reminded me of the monolith in the movie “2001.” I approached it with caution. I mean, where the hell was this thing getting its power? But any apprehension I may have had soon dissipated when I saw that the vending machine dispensed cans of hot coffee. I rummaged through my pockets and somehow came up with the right change. Invigorated by a warm caffeinated beverage all altitude-related fatigue suddenly vanished and we circled the entire rim of the mountain before the sun started to rise.
The last section of the staircase is a straight shot to the upstairs landing. I used to count off the stairs from 1 to 15 as I climbed, but of late I’ve taken to starting back at 1 from the halfway point. Counting from 1 to 7, followed by 1 to 8 somehow seems so much more manageable than counting all the way to 15 in one shot. Once at the top I regroup as I catch my breath and quietly bask in the glow of my small victory. I’m having an increasingly hard time holding my head up.I actually have to put thought into it. It isn’t something that just happens anymore. And my neck muscles fatigue quickly. The best feeling is to rest my head on someone’s sternum where it is thankfully weightless. This has become my regrouping position. As an aside it’s also how I’ve learned to identify all my friends and family by their toes. Once I’ve made it to the top of the staircase I’ll assume this position to gather my thoughts. There are only two reasons I would have made this journey. To use the bathroom or to lie down. But even if it was just to use the bathroom it’s impossible not to feel the bed calling. A ghostly apparition in my mind’s eye. Pulling me in. I mean, I made it all the way up the stairs in one piece. Doesn’t that deserve a nap? We could easily set up a commode anywhere downstairs in the house, alleviating the need to go upstairs. But our bedroom, well, our bedroom is our bedroom. More than any other thing in the house the comfort of our own bed is what I would think of most when we were away. It’s really the only reason I still persist with the stairs. If my legs were to outlast my lungs I’d be deliriously happy. But it’s a tight race.
About a month ago we embarked upon the final leg of our journey and entered the realm of hospice care. Even though I’m a healthcare professional I have always thought of hospice as something of a last resort. But hospice is simply a philosophy of care that focuses on the quality of your life instead of on continuing with treatment to prolong it. There you go, “quality of life.” I said it. That phrase I so hated when the neurologist used it at our first visit. When you’re initially diagnosed with ALS people send you all kinds of info about the latest research, drug trials and therapies. I don’t think you ever really know how you’re going to face any given situation until you’re actually confronted with it. Illness is no exception. It’s an extremely personal choice involving many factors but since the very beginning we decided we were going to spend our time spending our time rather than pursuing more time. I guess I just had it in my mind that the less life prolonging measures I took the more control I’d have at the end. And above all else . . . I’m a control freak. In order to qualify for hospice care you need to be medically certified as having less than six months to live. But philosophically we’ve been in hospice care since day one.
When you become a parent there is a love that develops between you and your child. It’s not a love that you’ve experienced before. I mean, we all have been in love. But this is different. It’s a love of a higher order. A love that you really wouldn’t have believed yourself capable of prior to actually experiencing it. Then if you choose to have another child there comes this nagging guilt. You are the center of your child’s universe and you’re about to bring another child into the world. You ask yourself how could you possibly love another child as much as you love the one you have? But just as before becoming a parent you could not have believed yourself capable of such a love, when you have another child that love divides with equal intensity. It’s a bottomless well. At least it is until they become teenagers.
Just as the milestone of becoming a parent magnifies your emotions, let me tell you, staring down your own mortality sure as shit does too. I don’t know why I’m surprised by the way people are supporting our family and caring for me. I think it’s more a feeling of unworthiness than anything else. I’m not going to say that it’s a different level of love I’m being shown or am feeling towards others. I suspect it’s always been there but I’ve just been in too much of a rush to notice. Each day is measurably harder and there have been nights I’ve laid down unsure if I would wake. It’s hard not to feel that the end is close. This afternoon I was napping. At least I think I was. And I had the weirdest feeling of being apart from myself. Not floating above or anything like that, just not being totally within myself. My physical and cognitive selves were slightly offset. Like I was testing the waters perhaps. Hard to describe really. I was somewhat surprised to open my eyes and see that I was still in my bedroom. If I could move my arms I would have pinched myself. But I was reassured by the sound of Rae, Sophia and her partner Yoni watching a movie behind me. The whole experience couldn’t have lasted more than a few seconds. At least I don’t think it did. Of course it could also have just been part of a natural dream cycle. Can’t really say for sure. I’m new at this.
When I stopped delivering babies one of my fellow midwives wanted to throw a roast (the honorary type not the edible type) to–in her words–“mark the end of an era.” Initially I declined but later changed my mind. I changed my mind because around the same time I attended the funeral of a community member. As I listened to the tender stories and anecdotes people shared I couldn’t help but wonder if they had shared those feelings with the person before he died. I don’t know the answer but guessed probably not. I mean it just isn’t something we generally do outside of our immediate family and friends. And even then not enough. There is not adequate space here for me to thank everyone around me for their love, friendship, bravery, compassion and saliva removal. And even if I tried I would no doubt forget someone. Last July I ended my Bar Mitzvah speech with a blessing. I would like to do the same here. In lieu of thank yous I’d like to offer an ancient priestly benediction to friends and family and the countless others who have helped us on our journey.
May the Lord bless you and keep you.
May the Lord’s countenance shine upon you and be gracious to you.
May the Lord look upon you with favor and grant you peace.
I’m sure it’s a question that has perplexed psychologists for eons. Do we assign cell phone ring tones to our kids based upon what we perceive their personalities to be or do their personalities evolve to fit the ring tones we assign them? Back in the early 2000’s when ring tones were the thing I had different tones for each of the kids. Sophia was “The Time Warp” from Rocky Horror Picture Show, Manu, “Paint It Black” by The Stones. The ring tone for Lisa, our eldest daughter, was “Tubular Bells,” the theme from The Exorcist. One day I was at work and Lisa called just as I was delivering a baby. As I placed the baby up on the new mum’s chest I said congrats, it’s a girl. But all the mum could say was “Oh my God, did I just deliver to The Exorcist?” I was going to say, “In about 14 or 15 years you’ll understand,” but thought better of it. I delivered the placenta, cleaned up and switched my cell phone to vibrate where it has remained ever since.
Our youngest daughter Sophia once informed me that the only reason she ever came home from college was to get in the blog. Last week she graduated from Knox College with a degree in Environmental Studies and moved back home to help out and take care of me. So I guess I owe her a shout out. But where to begin with Sophia? Perhaps the enthusiasm with which she plans to pimp my wheelchair ride? Or maybe the way she casually reaches out and pinches off a stream of saliva from my chin and flicks it to the ground without so much as skipping a beat in the conversation. While I appreciate the matter-of-fact way she tends to my ever increasing daily needs, to be honest I could probably do without her referring to me as “Mr Droolypants over there.” So yeah, Sophia. Where do you begin with Sophia? I’ve got it. How about we begin at the beginning.
June 8, 1993. Covenant Hospital. Urbana, Illinois. Rae had been laboring at home since the morning. We were in no hurry to get to the hospital but around 3pm there was a severe weather warning so we decided to head in. Our midwife Lisa Miller greeted us at the door and helped check us in. Rae’s mom and our eldest daughter Lisa, who was 4 at the time, also accompanied us. Progress was slow and after about 5 hours Rae had only progressed from 3 to 5 centimeters. It was a little disheartening to say the least but our daughter Lisa kept us grounded. While eating some cookies she nonchalantly observed “I’m having a snack and you’re having a baby.” In fact she was probably the most composed person in the room. Eventually our midwife suggested breaking Rae’s water to help move things along. Almost immediately after that Rae felt the urge to push but she had only just been at 5 centimeters dilated. Something similar had happened at the birth of our first daughter in England. Rae had the urge to push but the midwife wouldn’t let her because she wasn’t fully dilated and we thought history was repeating itself. This time though she wasn’t told not to push. Using my newly acquired labour and delivery nurse coaching skills I tried to do my part and encouraged Rae to blow through the contractions. Her response was to put her arm around my neck and bring me in close. I thought she was going to breathe with me but instead she looked me in the eyes and told me in no uncertain terms to “STOP. BREATHING. MY. AIR.” Then with the next contraction she made a primal bearing down groan that encompassed every fiber of her being. If you’ve been around laboring women long enough you know it’s a sound that regardless of dilation, can only mean one thing. Our midwife pulled back the sheet and told the nurse “Get me gloves quickly.” The nurse asked what size but by then it was already too late. I looked down and saw a head emerging. It really is a moment that defies description. But my first thought was surprisingly one of recognition. I know this person. When all I could see through my tears was a profile of a baby’s face against Rae’s thigh. Before she had fully emerged. Before we even knew if she was a boy or a girl. All I could think was that I’ve seen this person before. Rae and I have a template. Then the midwife guided Rae’s hands to reach down and birth the rest of the baby herself. This is how we met Sophia. But at the same time it seemed like we’d known one another for eternity. It’s weird. Some things you just can’t explain.
Have you ever wondered how a bubble holds its form? Magic that’s how. Oh sure. You can look on-line and probably find some crap about surface tension and atmospheric pressure but that’s just there for the non believers. On the days leading up to the 4th of July, Rae will test various bubble mixtures, making adjustments for the predicted humidity. Then on the actual day she stands by the side of the parade route with her bubble wands and puts on a show. Kids gather around. People on floats stop waving at the spectators and instead applaud her bubble art. People come up and take pictures. People stare as bubbles float by, surface undulating but holding form. If you look closely you can see the entire cosmos swirling back and forth on a thin iridescent film of soapy water. Surface tension, my arse. Some things you just can’t explain. Clearly, magic is afoot.
Several people have asked me about my favourite Leonard Cohen lyrics with the idea of getting a tattoo. Most recently our eldest daughter Lisa. Asking me to pick a favourite LC lyric is akin to asking me to pick a favourite child. However, I can narrow it down to a fairly short list without too much effort. For Lisa I suggested the opening lines of “If It Be Your Will.”
“If it be your will
That I speak no more
And my voice be still
As it was before”
Then she asked where I thought she should get it. Now Lisa already has eleven tattoos but I knew right away where I wanted her to get this one. “Across your heart” I responded. “I like the idea of my grandchildren meditating on the words of Leonard Cohen while they breastfeed.”
Rae’s job has been to keep my weight up and in the past I would often feel her poking my hips at night when she thought I was asleep and sighing disaprovingly. She no longer does that. Instead she now lays her hand on my chest to make sure I’m still breathing. Apparently the longest I’ve gone without a spontaneous respiration is twentyfour seconds. To this end we were given a new BiPAP machine. This one breathed for me instead of with me. Getting the right pressure settings is something of a trial and error affair and this one was programmed with considerably higher pressure to expand my lungs maximally. Problem is that once my lungs are full the rest of the air backs up in my mouth and the mask. And since my lips have no muscle tone they billowed out away from my teeth with each blast of air. Essentially, every three or four seconds, I looked like a guffawing chimpanzee. After one night we switched back to the old bipap.
I’ve heard it said on many occasions that you’re not yourself in labor. But I would beg to differ. In fact, I would go so far as to say that who you are in labor is the purest form of you there will ever be. Your station in life matters not at all. All of life’s fluff is stripped away and it’s just you trying to get through this event. I’ve always seen labor as one of life’s great equalizers. Of late I have been spending a lot of time pondering the similarities between birth and death and helping people through these transitions. The event itself is similar in its equalizing effect. There is no hiding from it. And in confronting it I am forced to face the reality that, for better or worse, this is who I really am. Or more to the point, this is who we really are. This is Rae and Ray.
Have you ever wondered how a relationship holds its form? Some time ago a work colleague asked me what it was like to be married to the same person for more than three decades. To which I responded you can’t stay married to the same person for three decades. If we were the same people we were when we got together we wouldn’t still be married. You have to evolve. That being said, I also believe that somewhere down inside there is a core essence to every relationship that for, better or worse, holds firm throughout it’s duration. The other day I was looking for a photo of me and Rae that I had taken in the mirror. It was just us goofing off a few years ago. But it might as well have been another lifetime. I wanted to compare it to a more recent photo. All I could see was the degree to which my body had deteriorated. But Rae saw it from a different perspective. It’s still Rae and Ray she said.
The other day I asked Rae if she could remove some unwanted body hair for me. As she did so she commented “aren’t you glad I don’t keep a blog?” Which got me thinking about how weird some of our personal grooming and hygiene habits are. The sort of things you don’t really think about until you have to ask someone else to do them for you. A friend texted the other day with a simple question. “What made today great?” I thought about it for a moment and responded “I can still wipe my own bum.” It takes a little maneuvering. I have to lift a butt cheek and sit on my hand to hold it in the right place but it’s doable. Since my diagnosis, as I pondered diminishing ability it was always wiping myself that came to mind. But peeing has its finer points too. When our son Manu helps me to the bathroom, before pulling my pants up he will take me by the shoulders and give me a shake. I’m not sure that this achieves the desired effect but bless his cotton socks, he’s the only person who thinks to do this. Rae for her part is a little more practical. She says she’s going to write a couple’s therapy book. “Things To Ask Your Partner Before You Have To Wipe Their Ass.”
I have spent the better part of the last quarter of a century working in hospitals and clinics taking care of people. But I don’t think it ever once crossed my mind in all that time that I would one day be the one that would need taking care of. Have you ever wondered how a family holds its form? Someone recently commented that after they had been out of town for two weeks, upon their return they didn’t know how to help out because the dynamic in the family had totally changed. Which is true to a certain degree. I wish we could adapt and then just sit back and enjoy the victory. But that isn’t the hand we’ve been dealt. Every day is a new challenge. But for all the upheaval our family is facing, as I look around me, it’s still us being us. The core essence holds. Sophia is out playing Ultimate Frisbee. Lisa, Manu and Jack are at a Mexican restaurant with their cousin Rachel. Me and Rae are having supper at home and watching Nurse Jackie. I just happen to be wearing a breathing mask and am being fed through a tube. But that’s who we are. For today at least. Like a bubble floating by, surface undulating but holding form. If you look closely you can see the entire history of our family up to this point swirling back and forth before you.
The night comes in many forms and I both dread and look forward to it. I dread it because if I’m going to have breathing difficulties the night is when it will usually happen. But at the same time it’s my favourite time of day because of how comforting I find being tucked in. It’s probably been close to four and a half decades since anyone has tucked me in at night. But every night Rae will lay me down while supporting my head and neck and arranges me on my right side around a body pillow. Left knee and arm above the pillow, right knee and arm below. Shoulders pulled back to maximize chest expansion and head moved slightly forward so that my ear is flat. Then she’ll tuck the blankets around me. I must have done this a thousand times as a midwife for women in labor but it wasn’t something I imagined that I might enjoy myself until Rae had to start doing it for me. It’s such a simple thing and only takes a few seconds but I think being tucked in is the embodiment of being cared for.
Of course Jack learned this long ago. We have a small blanket that he calls his “nye nye” blanket. Every so often he will lay down on the couch with the blanket and say “nye nye.” Rae will say “does Jack want to take a nap?” And tucks him in. He will lay there for a short time and then get back up. You can tell from the glint in his eyes that he has no intention of taking a nap for approximately the next six months but then he will lay back down again saying “nye nye.” Rae being the eternal optimist will again tuck him back in. And around the game goes. The sole purpose of which just seems to be to see how many times Jack can get Rae to tuck him in. He seems to have life figured out.My gait is becoming ever more uneven. It feels like my left leg is about two inches shorter than the right. I’m unclear on why muscle atrophy manifests itself in this way. If I had any upper body strength I’d be using a walker or at the very least a cane. It’s about 0.8 miles to the coffee shop and that is the furthest I’ve walked in a long time. When people go for walks I have taken to accompanying them on the trike. Pedalling slowly along the road beside them. The trike has become my self propelled wheelchair. If I could ride it around the house I would. It’s certainly a lot more comfortable than any wheelchair I’ve ever ridden in. And I don’t have to suffer the indignity of listening to someone huffing and puffing in my ear when going uphill.I have ridden my two wheeler through just about every landscape. Through desert and through ice. Through mountains and flatlands. Through endless snarled city traffic and through towns so remote that if two vehicles come to a stop sign at the same time no one is quite sure what to do. I’ve dodged cars, bikes, people, farm equipment, rickshaws, semitrailers, snakes, elephants, camels, dogs, moose and herds of sheep (although not all in the same day). But the boundaries of my world are contracting. There are very few places that I am both physically and psychologically at ease but on the trike is one of them. When I sit down it’s as if I melt into the seat. I can propel myself with a measure of grace that is sadly missing on two legs. I rode the trike thirty miles the other day which nourished my soul no end. Once beyond the outskirts of town I’m free. It’s just me and the corn. On the way out of town I even overtook another cyclist. I wanted to get off the trike and go back and give them a hug.Fairly early on after I was diagnosed a friend texted and advised that I not look up pictures on line of people with ALS. It was of course too late by then. I’ve always been fascinated by the human body and have used my own body as a lab to push its limits. I see its decline with equal, if not slightly more morbid, fascination. I no longer have to look on the internet for pictures of what ALS can do, I just have to look in the mirror. If I could I would be taking photos out the wahzoo but I can’t hold a camera anymore. Periodically I will ask Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it I was contacted by someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine is a professional photographer and was wondering if I would be willing to let her photographically document moments of our everyday life as our journey unfolds through to the very end and beyond. Ultimately embarking on a photographic process of documenting my own mortality. Hmmmm, let me think about it for a while I didn’t say. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when Jack sits in her lap with a book. But it’s hard to explain to a 21 month old that the woman with the camera isn’t really there.
One night a couple of weeks ago I woke up drenched in sweat and gasping for air. I started freaking out which I’m sure only made matters worse. It felt like I was breathing through a pinhole. I stood up, paced, sat down, stood up, paced some more. I recall making weird grunting noises trying to force air out in the hope that it would make my airway bigger. This had never happened before and neither of us knew what to do. Rae said the episode only lasted about a half an hour but it felt like an eternity to me. I think what scared me the most was the thought that this feeling of air hunger is what it was going to be like at the end. My first taste of what lay ahead. Eventually Rae convinced me to get back in bed and lowered my head back down to the pillow. She lay in front of me with her forehead against mine and softly coached me in breathing. Holding my hand with one hand while stroking my head with the other. Slowly she got me to slow my breathing down. The last thing I recall thinking before drifting off to sleep was that when my time comes this is how I want to goI think my favorite sound is that of rain. Rain on a tent, rain on a car roof, rain on the trees, rain coming and going in the background on “Riders On The Storm.” A deluge or a drizzle. I like rain, you get the idea. The day after my breathing scare we went to the palliative care clinic and it was suggested I start using BiPAP (Bilevel positive airway pressure) at night. It’s a form of non-invasive mechanical pressure support ventilation that augments your own respiratory cycle. I wear a mask and somehow it mimics my breathing pattern and when I inhale it blows air into my lungs. I’ve tried faking it out by holding my breath and it will patiently wait 14 seconds or so before saying OK Ray, time to breathe now there’s a good lad. And then it gives me a breath of air. It’s kinda freaky how it knows this and I try not to think about it too much. But the goal of all this is optimising my lungs’ efficiency and reducing the work of breathing. Since I’ve been wearing it I’ve only had one other episode of air hunger so I’m gussing it must be working. The other night I woke up and between the sounds of augmented inhalation I could hear a gentle rain outside the window. I tried to focus on the rain but the sound of the BiPAP kept disrupting my zen. I had to make a choice between optimal breathing or listening to the rain. It wasn’t a hard choice. I woke Rae and asked her to please take the BiPAP mask off.June 21st, 2012.Powderhorn, MN. I got a call at work one day from my brother and sister-in-law, Josh and Luci, up in Minneapolis and was informed that, oh by the way, we’ve entered you in the Powderhorn 24 (a 24 hour bike ride). Thanks, great I said having absolutely no idea what the hell I was getting into. I had two months to train. On the day of the ride at about 1 in the morning a cyclist pulled up beside me introducing himself as Ben and we started chatting. I stayed with Ben for three laps but had to work to keep up. Eventually I thought this is silly, I have another eighteen hours to ride. At this pace I’ll die on the vine so I dropped back. That’s the thing about being a midwife. You learn fairly early on that women go into labor at all hours of the night not just between 9 and 5. So I’m intimate with the measure of time that is 24 hours. I know what it takes to make it through. I spent the rest of the night blindly following any flashing red light I saw through the city streets in the hope it was going where I needed to go. But at a more sustainable pace. As it turned out I won the race that day by three laps. 347 miles in 24 hours. But I believe I won because I’m a midwife, not because I was the best rider.The night comes in many forms. Some of them more welcoming than others. In the past I have spent many a sleepless night staring at the ceiling fan as the clock tower on campus counted off the hours. But I can’t breath laying on my back anymore. I can’t lay on my left because of lack of tissue padding of any sort. So I lay on my right side facing Rae. For every sleep breath she takes the BiPAP gives me three. My respiratory rate is more in sync with the snoring rate of our daughter’s chihuahua that sleeps with us. I try not to think too hard about the implications of how shallow my breathing is becoming. Instead I focus on the business empire I’m going to build when I find a market for excess saliva. The night comes in many forms.
Peace, love and midwives
“She said, I’ll be with you
My shawl wrapped around you
My hand on your head when you go
And the night came on
It was very calm
I wanted the night to go on and on
But she said, Go back to the World.”
As Archimedes once observed, a lever long enough could move the Earth. I was not trying to move the Earth. I was just trying to raise the kiddush cup (ceremonial wine cup) to my lips. I may not be able to raise my arm but by using my elbow on the table as a lever I can raise my hand with a cup to about face level. But at times it feels like I might as well be trying to move the Earth. Once the cup is raised, then comes the tricky part, getting it to my mouth. What little ability I have left to swallow is contingent upon my neck not being tilted back or forward. Many times I need someone to steady the cup for me and bring it to my lips but for the Seder I wanted to do it by myself. The wine glass hovered shakily about six inches or so from my face. I stared it down. Determined to show it who was boss. Once I move the cup from its apex I have little control over it and it goes where it goes. I aligned my mouth in the general direction I thought the cup would fall and released. Contact.
All drink the first cup.
It’s about six miles from our house to Sinai Temple. On Saturday Rae and I would often walk to services. Okay, I know what you’re thinking. What kind of a day of rest is it when you walk twelve miles? But I wasn’t riding a hundred miles so it qualified as a day of rest. My favorite part of the walk was on the way home when we would go through Mt. Hope cemetery. We tried to walk different ways through the headstones each time, reading them. There was something about the thought of a life being summarized in a few lines on a piece of granite. All that living synthesized down to a couple of dates and kinship titles. I felt I owed it to people to read their headstones. Then one Shabbat on the way home from services as we were enjoying a meditative stroll through the cemetery, Rae suddenly announces “And I don’t want my headstone to say ‘and Rae his wife.’ That would really piss me off.” Duly noted I recall thinking.
April 1st, 1988. Kibbutz Matzuva, Israel. I was alone that particular Passover. Well not exactly alone, I was in the Kibbutz Matzuva dining room with several hundred kibbutznicks and their families, but Rae wasn’t there and she was the important one. She had flown back to New York to be with her Bobe (grandmother) who had had a heart attack. So there I was participating in this massive Seder. Although at this point in life “participating” meant just trying to make sure I turned the pages of the Haggadah at the same time as everyone else. As we began the festive meal and I was no longer absorbed with trying to look like I knew what was going on, my thoughts began to wander. I thought of Rae in Bay Shore on Long Island where I imagined her Bobe, who had now been released from hospital, directing everyone to prepare for the Seder. Then I had this strange feeling about people all the world over doing this exact same thing–preparing, eating, bringing their families together for the Seder–many of them, I imagined, thinking of Israel. I mean, here I was participating in a Seder in Israel. How many people have dreamed of this? How many people have been able to fulfill that dream? I had a feeling of connection that I had never experienced before, a feeling of being part of something much bigger than myself. Naturally, anyone raised in a Jewish household would say: “Well of course, that’s the point.” However, coming as I did from a household of no discernible religious affiliation this was for me a moment of great enlightenment. How foolish of me to feel alone.
All drink the second cup.
Raising a wine glass is like climbing a mountain. Once you’ve attained your goal there is a tendency to relax. You want to enjoy the moment. Thoughts of the descent or putting the glass back down are far from your mind. A Passover Seder is meant to be for the children. It even begins with the Biblical verse “You shall tell your child on that day, saying…….” Yet depending on how much you want to include, their duration can test the patience of even the most dedicated adult. To give our kids a sence of ownership, about ten years ago, we had them start leading our Seders. I found some of the recordings of the blessings I had made for them and put them on my iPhone. My voice. It sounds so alien to me now. But playing these recordings was the only way I was going to be able to participate in the Seder. Our eldest daughter Lisa was reclining in the chair next to me and was leading the first Seder with Jack on her lap. After the blessing over the fruit of the vine I took a sip of wine from the kiddush cup feeling very pleased with myself. But my victory was short-lived. As soon as I took the cup away from my lips I lost control of it. Down it went and emptied onto Jack and Lisa’s lap. I wondered if it was too soon to recite the ten plagues?
Speed was all I cared about while riding my bike. I was vaguely aware of the scenery around me obviously but only in regards to how far away a certain landmark might be. I could pee without getting off the bike and without making a mess. Obviously a lot of practice and careful consideration of wind speed and direction are critical to the success of this maneuver. But I spent a lot (a hell of a lot) of time on my bike. I would stop to rehydrate. And then only begrudginly. As I have mentioned before, I hate how slow I ride now but due to this a strange phenomenon has occurred. I have time to absorb my surroundings. I have taken to pulling off the road in the middle of nowhere and just sitting there on the trike. Trying to embrace one of the limitations of ALS that I dreaded the most. Having to pay attention to things. You know, there really is some beautiful stuff around us. Everywhere you turn. Has that shit always been out there?Ha lachma aniya – The bread of affliction. Our son Manu led the second Seder. At the beginning of the Seder, we break one of the sheets of matzah and call it the bread of affliction. It represents the meager sustenance of slaves, the meanest fare of the poor, the quickly produced food of those who had to make a hurried exit. But man, do we snarf it down. I did not try to eat any matzah on the first night. I had watched as piles of it disappeared but thought better of trying any myself. The Seder tells a story. One that starts in slavery and ends in freedom. The matzah later represents that freedom, the bread we ate when liberated from Egyptian bondage. On the second night I decided to go for it. I asked Manu to break off two small pieces of matzah and spread about a half inch thick layer of butter on them in the hope that would make it possible to eat. I took a bite but despite the butter it still disintegrated into a thousand pieces in my mouth. I quickly excused myself and went outside where I hocked it up over the side of the deck.
All drink the third cup.
Just as the Seder represents a journey so does this blog entry. I started writing it with my finger and I’m finishing it writing with my eyes. When I look at my Dynavox eye-gaze computer screen the letter or area on the desktop I want the functionality to occur becomes highlighted and I can then select them. That this technology exists is amazing. That I need it is a total mindfuck. Manu spent the weekend programming appropriately inappropriate phrases into some of the pre-sets. I spent the weekend uploading Leonard Cohen into the music player. Rae spent the weekend rolling her eyes at both of us. There’s a learning curve in getting used to the computer. Once calibrated to your head position you just move your eyes. It’s quite the ocular workout. Although in a room full of people when I’m constantly looking back and forth between the computer screen and the people talking I often find myself staring intensely at a person’s forehead. Expecting it to light up and for them to suddenly be able to understand everything I’m thinking.
In English our names may be spelled differently but in Hebrew Rae and Ray are spelled the same way (ריי). On Kibbutz Degania Bet where we first met we didn’t know where we were working on any given day until the work list was posted the night before. In those early days we spent a lot of time working together in the watermelon fields. At supper time the heads of each department would come around to the person making the worklist with requests for the number of supplemental workers they needed for the next day. I often heard them ask for “Ray veh Rae” (Ray and Rae). The fact that we had the same name was still something of a novelty to everyone. At the time I barely spoke any Hebrew but the sound of the words “Ray veh Rae” popped out of any conversation. This was who we were at the beginning and this is who I want us to be for perpetuity. That’s all our headstone needs to say. ריי וריי (Ray veh Rae). That is the most concise synthesis of our life’s together that I can think of.
Perceptions are everything. Our perceptions of the events going on around us can shape our reality more so than the actual events themselves. It’s all about how you interpret the events. What’s a piece of matzah? That same matzah that is initially held up as being emblematic of slavery and suffering is by mid Seder magically transformed to represent the joy of liberation. What’s a dandelion patch? A bunch of weeds or a meditation retreat. Alright, so it took twenty years to notice the dandelion patch. What’s in a name? Ray or Rae are just that. Names. But Ray veh Rae summarizes a shared life that is so much greater than the sum of its parts. Perceptions are everything. What’s a Seder? The telling of a story and its relevance for the ages is the message: that no matter how difficult your circumstances may seem, no situation is insurmountable.
Initially it’s hard seeing people who are further along in the disease process than you. Seeing them in the waiting room in motorized wheelchairs, listening to them trying to talk. On an intellectual level you know that will be you one day but on an emotional level there’s still a disconnect. At our first MDA clinic visit a year or so ago our neurologist talked to us about a PEG, or Percutaneous Endoscopic Gastrostomy (feeding tube to you and me). He was just giving us an overview of treatment options for the future. Talking about how the PEG would boost energy and improve quality of life when I was too tired to eat. In retrospect I think it was the term “quality of life” that disturbed me more than the idea of the PEG itself. Being a health care professional it is a term I associate with end of life. When you have exhausted treatment options you focus on maintaining “quality of life.” At the time my biggest concern was the ever increasing amount of tongue chewing that went into trying to button my shirt. I had not come prepared to address anything to do with “quality of life.” I shut out the remainder of the conversation.
September 4th, 1987. Chiang Saen, Thailand. When I look back at our travel journals so much of what we wrote about involved food. We travelled for almost three years but if you asked us what was the most magical night of that time I think we would both give the same answer. The Golden Triangle was one of those places we went to just to say we’d been. I don’t know what we expected. Certainly not an archway by the side of the road proclaiming “Welcome To The Golden Triangle.” Never-the-less that’s exactly what we did find. With the exception of sharing a small bottle of locally brewed whisky there was nothing we did that night we haven’t done a thousand times before or since but sometimes place and circumstances colide to create a magical moment in time. For supper we found a small resturant with a deck that overlooked the confluence of the Ruak and the Mekong Rivers, the geographical point that designates the center of the Golden Triangle. Maybe it was the taste of the pork hot pot we ordered, maybe it was the view of the mist rising from the jungle across the river in Laos, maybe it was the shooting stars in the sky above the Mekong that night, maybe it was the buzz from the whisky. But man, that was a moment for the ages.The sort of dates we go on these days aren’t anywhere near as romantic as that one. Visits at the various clinics are pretty much the main source of outings for Rae and me these days. We just had a follow-up visit with the orthopedic doctor. The X-ray of my arm showed that it has healed completely but mineral density is way down due to lack of use. Which unfortunately makes it much more prone to re-breaking. I’m essentially becoming like a china doll. The irony of this is that as you become less and less able to do anything silly and hurt yourself, you become more and more fragile.
Then there was the idea that the neurologist had brought up of being too tired to eat. Clearly he had no idea who he was talking to. We are foodies of the highest order. The kitchen is the smallest room in the house but the most used. If it wasn’t for the fact that I rode my bike 2-300 miles a week I would have (and had) been 50lb heavier. The only reason I addressed the PEG at all was because it amused me that auto-correct kept changing it to RPG (it’s the little things). I had held out as long as possible on getting the RPG. It wasn’t that I didn’t think I needed it. The writing had been on the wall a long time. I could eat continuously for two hours but between the speed I am able to eat and periodic choking breaks, I’d still not get enough down to sustain a sparrow. Success of a meal could be gauged by how big the pile of napkins next to me on the table was when I was done. My weight was down to 127lb. No, it wasn’t that I didn’t need the RPG. It was just that it was one more step. One more step in the wrong direction. One more step towards where everyone else in the waiting room was. One more time the neurologist was right and I was wrong.We have three kids and each one is coping with this very differently. We all deal with things within the realm of our own capacity and from my perspective there is no right or wrong way. But from the perspective of others, people need to do what’s necessary to minimize the potential for regrets. I have often pondered which is harder, being the one going through this or watching a loved one go through it. Because of my dads party-like-there’s-no-tomorrow lifestyle it was apparent to me early on in life that he was going to have a long period of infirmity leading to his death. As he started to go downhill it wasn’t exactly a surprise. Had he taken care of himself and lived the sort of life I have, watching him falter would have scared the fucking shit out of me.There was a week between the pre-op consult with the gastroenterologist and the time surgery was scheduled. I had seven days to back out. I wanted to desperately. But what was I hiding from? It wasn’t as if it were major surgery. Although I tried to tell myself surgery on anyone with diminished respiratory capacity was risky. However, the doctor dismissed my concerns saying my pulmonary function was still better than your average 80 year old. I think this was genuinely supposed to allay my fears. Denied of all excuses I begrudgingly acquiesced to the surgery. It was same-day surgery and on the discharge papers it said that I could resume normal activity the day after surgery. Which to me meant going for a ride. I didn’t think this would be an issue since the only other surgery I’d ever had was a vasectomy and I’d ridden my bike home from the clinic after that. However, the surgery for the RPG placement was a little more substantial. And riding turned out to be a bad idea. In fact doing anything that involves your abs (like getting in and out of bed, getting on and off a trike and most everything in between) is a bad idea. I thoroughly enjoyed riding around with Josh and Luci but paid for it the next day.
When Rae first spoke with the nutritionist she was told about nutritional supplies she would need for the RPG. But Rae was adamant that only food she had prepared was going down my tube. Whenever I hear the blender going in the kitchen I know the food alchemist is hard at work. Then Rae will walk in the room with a blender bottle full of liquid and a grin on her face. Rae won’t tell me half the time what shes sticking down there. I only know later when I belch. Oh, there was broccoli in that. Circumstances aside I have come to enjoy these moments and appreciate her stuborness. Glad that it’s her pouring a home-made concoction into a syringe rather than me sitting alone by a pump that was mechanically delivering an anonymously pre-prepared bag of nutrition. I don’t get hungry anymore. Sadly, I think that if I never ate again I wouldn’t miss it. I eat when Rae tells me it’s time. But the other day I found myself nonchalantly telling Rae that I’d let her put something down my RPG if she felt like making something. Naturally she leaped at the opportunity and fired up the blender. As I said before, sometimes place and circumstances colide to create a magical moment at the most unexpected of times. Maybe it was the smell of the Indian food Rae had ground up, maybe it was the look of concentration on her face as she measured each syringe full, maybe it was knowing what this meant to her, maybe it was the buzz from the two sips of pinot I’d managed to keep down, maybe it was the stark realization that I was being fed through a hole in my abdomen directly into my stomach. But man, that was a moment for the ages.January 8th, 2015. Carle Hospital, Urbana, IL. I stood before the doors of labor and delivery one last time. This was my last call day as a midwife. It had been almost 23 years since I had arrived for my first day of work as a nurse back in January of 1992. 23 years. Damn. There had been a lot of amniotic fluid under the bridge since then. As a nurse I had tended to almost 700 women through the births of their children and another 2,095 as a midwife. Back in ’92 there had been no cameras, key pads or ID badges to swipe. Just a rather imposing sign above the door that read “Authorized Personnel Only.” I hesitated, not sure whether or not being a freshly minted Associate Degree labor and delivery RN qualified me as an “authorized personnel” or not. I remember wishing that there had been a window in the door so that I could see what lay on the other side. But alas no. So I took a deep cleansing breath, pushed open the door and walked on through.
But that’s life. You have to be careful what you wish for. Sometimes you are given a window to see what lies on the other side of the door. Unfortunately you are not given the option of whether or not you can go through the door. You just have to take a deep cleansing breath and push on through.
November 19th, 2009. Moraira, Spain. After Dad retired he moved to Spain with his long time partner Vi because the cost of living in London was too high. He had been in poor health for longer than I could remember and every time we saw one another we knew it could be for the last time. Eventually the inevitable call came and less than 48 hours later I was in Spain. My sister Lynn and brother-in-law Tim were already there when I arrived. There was going to be a small memorial service but no visitation. Dad wanted to be cremated, but Vi had held off on the cremation in case Lynn and I wanted to see Dad one last time. My initial inclination was to say no but after talking to Lynn about it I changed my mind. The next day we went to the funeral home and while the guests arrived Lynn and I went into a back room where there stood a coffin. The funeral director wheeled the coffin in front of us and asked if we were ready. Lynn and I held onto one another and signaled yes. The guy reached over the coffin and with a move that was reminiscent of a Master Chef lifting a cloche to reveal his creation he pulled back the lid. My first thought was, wow, Dad must have really let himself go towards the end. He had lost a lot of weight and a scraggely beard adorned his chin. Dad had grown a short lived moustache soon after Sgt. Pepper was released but that was the only facial hair I had ever seen on him. Death obviously changes a person’s appearance but I wasn’t going to be the first to admit I didn’t recognise my own dad. And besides, I was trying to be strong for Lynn. After what seemed like an eternity Lynn finally spoke. “Well then.” She said. “That’s not him is it.” Our attendant, who up to this point had been standing by in quiet reverence, suddenly looked up and peered into the coffin. His eyes got very wide. Realizing his mistake he slammed the lid shut and hustled the coffin out of sight.
My life is getting more surreal by the day. The coffee was placed on the counter before me. I looked across the coffee shop at the table where I had left my things and figured that I would have no problem making it that far. I clasped my hand firmly around the cup, took a deep breath and set off. But my arm started to give out as soon as I left the counter. I could see the coffee going down but there was nothing I could do to stop it. I looked around for somewhere to quickly put the cup down but all the tables had people at them. There was nothing but a bench where my failing arm brought the cup to an abrupt crash landing spilling half the contents on the bench and floor. At that moment my brain disconnected from my surroundings. I was there but I wasn’t. I wanted the ground to just open up and swallow me. I had made it maybe five steps. The people who work there know me and what’s going on but to everyone else I was just this guy who decided to pour a perfectly good cappuccino on the floor for no apparent reason.
August 6th 2008. Taboose Pass Trail, California. Eric had been trekking for decades and had packing down to a fine art. He had sent us a very precise list of what we should bring. Still, with all the food and gear for a week in the unpredictable climate of the High Sierra wilderness our packs weighed about 60lb. It wasn’t the fist time our son Manu and I had accompanied Eric. Anyone can drag their kids into the wilderness, the key is having them want to come back again. So I was feeling pretty good that he was back for more. However, 6 1/2 hours of hiking and 6,000 feet of elevation gain later I was the one swearing I’d never do this again. It was the trail that just wouldn’t end. And that was just the beginning, we climbed two 14,000 ft peaks that trip. One of the things about Manu though, no matter how far ahead he got on the trail he never crossed a threshold without us. He would always wait for me to catch up so we could cross a pass or exit a trailhead together.When we were kids bedtime was around 7:30-8:00 or so. This was way too early to be tired but those were the rules. I spent a lot of time lying awake listening to the sounds of grown-ups downstairs talking, drinking, laughing, watching the programs that came on the TV after nine o’clock. The mysterious world that you were not part of. I would often sit at the top of the stairs wanting to go down, wondering how long it would be before I understood the jokes they were laughing at. Occasionally I summoned the courage to venture down. Testing my boundries one stair at a time to see what would happen but nearly always chickened out and retreated back to my bedroom. I recall one night that I made it all the way down and gingerly pushed the living room door open. Dad, a sixty cigarette-a-day chain smoker, sat in his chair watching TV enshrouded in an ever present halo of thick smoke with several empty beer bottles by his side. When he saw me I expected to be immediately sent back to bed but to my surprise he silently motioned me to come over and sit in his lap. Basking in the aura of cigarette and alcohol fumes that was Dad, together we watched TV. “Callan” a program about a ruthless secret service agent. Grown-up TV. My first glimpse into the mysterious downstairs world that existed after dark.Until I get the “eye-gaze” tracking computer set up, my main form of communication is texting. When people are over Rae announces “everyone get your phones out.” Then we set up a group text with everyone in the room. Even when I had two fully functional hands texting was not my forte. Now that I have just the one finger I communicate at the speed of Dori (from Finding Nemo) trying to communicate with the whale. By the time I have got my thoughts out there, the conversation has moved on three subjects. If I have something that just can’t wait I wave my hand until Rae notices, then she will halt the conversation and with her best teacher voice announce “Yes Ray. Do you have something you would like to share?” Manu was down from Chicago over the weekend and introduced me to the SwiftKey keyboard. Instead of poking the keyboard with a weak crooked finger and hoping it lands close enough to the right key for auto correct to do its thing I can now slide my finger back and fourth in a “z” formation across the screen and words magically appear. Apart from making typing quicker the sliding motion is almost meditative. And now I’m only two subjects behind in the conversation instead of three.
The last visit I had with Dad was probably the best visit we ever had. We rarely saw eye to eye. There was plenty of blame to go around on both sides for this. He could have been more of a dad, I could have been more of a son. Off hand I can think of maybe two tender moments we shared as I was growing up. Maybe three depending on how far you wanted to stretch the definition of tender. It was a different time. A time when there were fairly rigid constraints on how men could express emotions. But regardless of the reasoning for this seeming inability to openly express love it doesn’t stop us eternally yearning for even the slightest hint of approval. One thing we did share was our love for music. So on this visit I decided I would take him an iPod. He loved jazz. He didn’t own a computer so I loaded the iPod with all the music I recall hearing coming from downstairs when I was a kid. I was worried about his ability to operate it and read the screen given his poor eye sight but he mastered it pretty quick. I have a fond recollection of him holding the iPod about two inches from his face selecting music. About two weeks after I got home I got an excited call from him. “Do you realize Monty Sunshine is on the iPod? And Chris Barber Live At The Royal Albert Hall? I haven’t heard that in forty years.” I said “Yes dad I know. I put it there.” I guess he thought you just bought a Jazz iPod or Rock iPod and it came fully preloaded with that genre of music. As he processed this I could almost hear gears turning on the other end of the phone. “So….. I could send you back the iPod with all my CDs and you could add them too?” “Yup.” And this iTunes thingy you speak of, it has everything?” “Not quite but close.” A month or so later his entire CD collection arrived in a box with the iPod.I could easily become a hermit. I have never been prone to taking naps but sometimes the energy of people is more than I can handle and I have to excuse myself under the pretext of needing to lie down. Sometimes I sleep and sometimes I lie awake listening to the sounds of talking, joking and laughter downstairs. The familiar voices of family and friends, the comforting melody of the different vocal tones and intonations that come with having three generations interacting in the same room. The smell of cooking instead of the smell of cigarettes wafting upstairs. A place where people come together. I could sit at the top of the stairs listening to that for a long time.
Before we become parents we all have fairly firm ideas about the type of parents we are going to be. These ideas stand firm until we actually become parents. Then it all goes out the window. I essentially modeled my parenting on trying not to be like my dad. He saw himself as the provider and while we may have lived under the same roof, nurturing was not in his job description. He was a hedonist and left a trail of destruction wherever he went. It was difficult to be upset at the coffin mix-up because in the back of my mind I could hear him chuckling. Having the last laugh. Neither age nor infirmity (nor death apparently) dimmed his spark. But the problem with the concept of actively trying not to be like someone is that while you may have the best of intentions, you never truly escape that person’s shadow. You have to let go of everything to be the parent you’re going to be. Your kids are unique individuals who have never been before and will never be again. You almost have to let them teach you how to be a parent rather than the other way around.
I am the consummate competitor. Everything from riding a bike to making a cup of tea has to be done to the absolute best of my ability. It isn’t a button I switch on or off, it’s the only mode I know how to operate in. I have always been the first to make it to the pass or trailhead. I am the one who waits. Not the other way around. The difficulty I had keeping up with Manu that trip was a harsh mental adjustment. On the flight home from our hiking adventure in California a movie started playing on the seat back video screen. I plugged in my earphones but my headset jack wasnt working. Seeing this, Manu just took off one of his earbuds and handed it to me so that I could listen. My initial inclination was to decline his offer. Primarily because I wouldn’t have thought of doing that for him but he persisted. We spent the next hour and a half leaning into one another, one earbud a piece, watching “Shrek The Third” in difficult to hear mono. To him it may have just been an offhand gesture he hasn’t thought of since. To me it was an unexpected moment of closeness, the likes of which I hadn’t felt since sitting in my own dad’s lap all those years ago. At that moment I had an epiphany of sorts. One that is helping me through life to this day. The point wasn’t that the movie was difficult to hear. As brutally hard as some of that trip was physically, the difficulty was not the point. As hard as life is becoming, and as much as I’m sure we’re going to run out of ways to adapt at any moment, the difficulty of life is not the point. The point is that we’re sharing it.
There’s a scene in the first “Back To The Future” movie. The main character, Marty McFly, is catapulted back in time to 1955 where he meets, as high school students, the people who would one day become his parents. Whenever Marty is confronted by a situation that is too overwhelming for him, which seems to be quite often, he says “Whoa. This is heavy.” Eventually his friend, the eccentric scientist Doc Brown, says “There’s that word again. ‘Heavy.’ Why are things so heavy in the future? Is there a problem with the Earth’s gravitational pull?” The future they were referring to was 1985 but as I recall, gravity was working just fine back then. However, here in 2016 it’s another matter altogether. There is definitely a problem with the Earth’s gravitational pull because things are getting really heavy. And seem to be getting heavier by the day. I’m sitting here at the coffee shop typing with one leaden finger, drinking a 12 oz cappuccino. I’m not a caffeine lightweight but the 16 oz became a victim of that problem with the Earths gravitational pull some time ago.
I live in parallel worlds. The one thing that ALS has not affected (so far) is my ability to sleep. Although Rae has to arrange my body parts in a comfortable position after she has laid me down. My dreams are deep and at times pretty intense. But rarely, if ever, do my ALS symptoms intrude in my dreams. When I dream about riding it’s always on my two wheeler. To the best of my recollection the trike has yet to make an appearance after lights out. Last night I was riding in a race. I had two laps to go and was in the lead. On some level I was quite aware I had no business riding this well but I wasn’t complaining and just went with it. Enjoying feeling the breeze on my face and watching the road fly by under my wheels. Alas I can not say if I won because I awoke before the end of the race. But in that hazy post dream semi conscious state I was still feeling pretty stoked about my cycling skills. I just couldn’t understand why such an amazing cyclist was having so much difficulty rolling over in bed.I’m not going to jinx it by saying Spring is here but it was in the 70’s today. Time to break out the cycling shorts. There are hazards to riding a recumbent trike. Some, like visibility, are obvious. Others are a little harder to foresee. I guess I have never noticed just how white my thighs are after the long winter hibernation because they are generally underneath me on the bike. But on the trike they are front and center. This vast expanse of pale flesh reflecting the sun. It can cause a total white-out. For my part I can fix this by investing in some better sunglasses. But I worry about blinding on-coming drivers.
Over the years my life has become very ritualistic. I’ve just refined everything till it’s a certain way. I’m guessing most of us do this to some degree. When you’ve gotten things the way you like them why mess with it. Some of these things are negotiable depending on the company. Other things not so much. But obviously riding was subject to this ritualization. Whenever I reached the furthest point on any given ride I would buy a lottery ticket. Just one. It was my early retirement plan. In the decades that I did this I was “Sorry, not a winner” 99.99% of the time. I never won the big one. Although I do recall having won $10 once. My rides are shorter these days but I still buy the tickets. But along with lowering my expectations I have also redefined winning the lottery. Now winning the lottery qualifies as putting a piece of food in my mouth and having it land between my teeth first try instead of having to toss my head around like a bloody heron trying to get the food to a place in my mouth that I can bite down on it.
I have taken to traveling everywhere with a chopstick and a cloth tucked into my arm sling. In the past when we went out Rae would ask “do you have you’re phone and your wallet?” Now it’s “don’t forget your chopstick sweetie.” Both items are critical in the off chance that I decide to take my life into my own hands and eat something in a public place. The cloth is for the incessant salivation and to hold over my mouth because I have to chew with my mouth open. The chopstick is my prosthetic tongue. At home it doesn’t matter if I poke food around my mouth with my finger. Or spit food back onto my plate because I took too big a bite. But in a restaurant that might be considered crass. So I use the chopstick to discreetly (ha ha) work food over to the right side of my mouth where it can be chewed. I don’t know if there’s an etiquette book on eating with ALS. If such a thing does exist I’m guessing it’s pretty short. It’s odd what I can and can’t consume. I can drink coffee yet I choke on water. Brie and crackers, fine. Popcorn, instant death. Soup, bring it on. But if it gets too thick, the person sitting across from me will end up wearing it. Some things work and other things not so much. There seems to be no rhyme nor reason to it all. I guess it will have to remain one of life’s great mysteries. Like why do homeless people have such thick heads of hair or how is having your seat tray fastened in the upright position going to help if your plane drops out of the sky from 30,000 ft?Jack’s word for bottle is “baba.” Jack’s word for me is also “baba” but in a different pitch. I love reading to Jack. Having him be excited to see me is a relatively new development. He never used to come to me because he knew I couldn’t pick him up. But now he’s more mobile and just throws a book and/or a bead necklace in my lap and climbs up into the chair with me. And best of all he understands every word I say. He is probably the only one that does. He will occasionally correct me. Pointing to a word or letter or picture in the book and repeating it like his mum or Bobe say it (he’s a clever little shite is our Jack). But never once has he given me the “and what the hell are you on” stare.
A common worry amongst first time moms was “what if I’m in labor and don’t know it?” I try to reassure them that this is unlikely. But a lot of people seem to have a friend who had a friend who had a cousin that delivered on the living room floor because they didn’t know they were in labor. I try to give them permission to worry about something else. Often without success. I try many ways to get my point across. It usually goes something like this: Here we are having this conversation. If you were in active labor, even if we shared this same physical proximity we would not be in the same place. You would be in labor land. It’s like a window into another world. And the only time you can truly understand that place is when you’re in the midst of it. No number of books or classes can ever prepare you for it. And once you’ve had the baby you want to hold on to the experience. You have been through this thing that you’ve been hearing about for most of your life. But it fades quickly. The window closes. It wasn’t meant to be held onto. It’s too intense. Given that I have not so much as experienced a menstrual cramp in my life this is my best shot at describing it. That being said there are not words that I am aware of in any language that can adequately describe the process of bringing life into this world but it strikes me as something you can’t miss.People would often come to prenatal visits with a “birth plan.” I preferred to call them “birth wish lists” since it really wasn’t something anyone could plan. Birth tends to have a life of its own. I’m guessing that for all our attempts to stay on top of things and plan, death is going to be similar. A window into another world that you can only appreciate whilst in the midst of. We were at the doctor’s today filling out the DNR form (Do Not Resuscitate). Like all things it wasn’t just black and white. There were lists of circumstances and selective types of resuscitation that I might find acceptable in certain cases. To avoid confusion I declined it all and signed on the dotted line. It’s now on file as part of my “death plan.” I look at the words on the DNR form and I know what they mean. But I don’t really. I have witnessed birth over 2,000 times. Yet as I said describing it eludes me. I have only witnessed a handful of deaths. Here we are preparing for the great unknown. I know how I would like it to go but I’m preparing for something that can not be expressed from this plane of existence. Rae is a doula. A doula is someone who provides physical and emotional support to the mother before, during and after birth. Also providing emotional and practical support during the transition to motherhood. She has been a doula for longer than I have been a midwife. I have seen Rae in action in this capacity and it is truly a thing to behold. I will be going through a very different type of transition but it is her stated goal to doula the shit out of me to the very end. In the face of so much unknown I find that very comforting. More so than any piece of paper on file in my chart or plan I may have made.I recall several occasions where my grandmother brought up the subject of her death, or “not being around anymore” as she referred to it. She was always immediately hushed by family members and on one occasion even chastised for being so morbid. You could almost feel a collective sigh of “oh God, here she goes again” whenever she brought the subject up. A few weeks ago when we visited Sophia at Knox we took her out for Mexican food. We have tried to be as open and matter-of-fact as possible about what’s going on. We have a rough outline of the funeral service and Sophia asked me “how do you feel about all that?” We didn’t include everything we could have in the service but we still have quite a bit going on. There were a million questions Sophia could have asked. Or she could have just changed the subject as my family always had. I mean, here we were in a Mexican restaurant talking to her about her father’s funeral. But after a long pause and a deep slow sip from her margarita she looked up pensively and asked: “so is there going to be a halftime show?”
July 8th, 1999. Symmetry Spire, The Tetons WY. You know that feeling? The one where you’re about half way up the fourth or fifth pitch of a climb. And you’re stuck. You’re holding on to the rock face with your fingers with all of Gods creation stretching out below you as far as the eye can see and you just can’t figure out how to pull the next move. Then suddenly the thought hits you. How the fuck did I get here? That feeling. Been having a lot of those moments of late.Last weekend we drove to Galesburg to see Sophia play in an Ultimate Frisbee tournament. On the way Rae said that she had been reading “The Survivor Guidelines.” It’s a step by step guide put out by the local Jewish community about what to do after the passing of a loved one and the timeframe in which each task needs to be accomplished. Notifying the coroner, planning for the funeral service, the seven nights of shiva etc. She said she hadn’t realized how there was so much to do and compared it to planning a Bar Mitzvah. But in this case she would be doing it alone. And it’s not like you can send out a “save the date” card to your friends and family. I asked if I could take a look at the book to see if there was anything I could help take care of ahead of time. It’s not a big pamphlet, it’s more the circumstances surrounding the need that can make it all seem somewhat overwhelming. When I saw how much the whole affair would cost I was a little shocked but then it occurred to me, oh yeah, my funeral would actually cost less than several of the bicycles I own.When you belay a climber, even if you can’t see him or her, you just get a feel for how they’re doing by how the rope is handling. Sometimes the signs are subtle like tension in the rope and sometimes not so much like when you’re suddenly yanked several feet into air when the person on the other end falls. My fellow climber Mark had preceeded me on this pitch and as the belay I had felt a period of time where the rope had repeatedly lengthened and shortened without any overall upward progress being made. So I knew there was a problematic section. I had tried leaning out to see what was going on above but couldn’t really see much from my vantage point. And now I was stuck at the same point and Mark in turn at the other end of the rope knew I was having difficulties. You try to move up but always seem to fall short of the mark. You move to the left, then the right looking for something you may have missed. I called up to Mark for some beta. To which he yelled down “WORK YOUR WAY IN A GENERALLY UPWARD DIRECTION!”
A good deal of living optimally with ALS involves having things in place before you actually need them. You know you’ll need a ramp. Build the bloody thing. Get it out of the way. I’m not going to die tomorrow. At least I don’t think so. Although, having said that if we’ve learnt anything from ALS it’s never to take anything for granted. But eventually I am going to die. This of course has always been the case but now I feel like it’s being rubbed in my face. Everyone will face this (or not) in a different way. But the only way I know how to deal with anything is to prepare. To plan. To have things in place before we actually need them. It’s not the only thing on my mind but let’s just say it’s up there. Rae and I met with the Rabbi last week to go over the order of things and what there might be in terms of flexibility in including things that are meaningful to us and our family in the funeral service. We went over practical issues such as types of coffin and which funeral homes may best suit our needs. But also more personal issues such as who we’d like to speak during the service (you’ll be notified in due course), what song I’d like played during the service (the singer’s initials might be LC) the songs for each night of Shiva (yes, I am going to DJ my own Shiva) and how we’re going to get from the Temple to the cemetery (bicycle of course). If you’re coming from out of town bring your bike. I hope all who are able will form one huge bicycle processional. When Rae and l meet with the people from the funeral home we’ll find out if you’ll need to wear one of those special flags.To my left was a vertical arête (outside corner). It wasn’t quite 90 degrees and there was nowhere to put my feet but that was all I had to work with so it was going to have to do. I turned to face the arête and with both hands clasped the corner. Then I gingerly layed back away from the rock-face and placed the edge of my shoes against the flat rock surface. Looking for the sweet spot between leaning out far enough where the rubber of my shoes would provide some traction against the rock but not so far that my fingers would pop off the arête. One of my starkest recollections of this short section was that until now I had been climbing facing the rock, now I was climbing with my side to the rock, staring into the void beyond the corner. Slowly putting one hand above the other and pushing up with my feet I worked my way in a generally upward direction until I got to a place with more usable features. Once there, pulling myself up was a relative piece of cake. I was a little apprehensive about what else may lie ahead but once I passed that section everything else was comparatively easy.As our list of things to do grew it occurred to me that these were all things that people on this side would need to do. I have said that I do not believe in a life after this one and that still holds true. However, I couldn’t help but ponder, if there were an afterlife would there be this much paperwork on the other side? As a midwife I have seen firsthand the staggering amount of paperwork that is generated each time a life crosses into this plane of existence. My life did not begin at birth and I doubt it will abruptly cease when I draw my last breath and my muscles finally stop fasciculating. There is a traditional Jewish belief that the soul hovers over the body for a few days after death. The thought being that the soul is confused and stays in the general vicinity of the body until it is interred. Perhaps having its own “how the fuck did I get here” moment.
I was quite relieved, to say the least, to finally reach Mark at the belay station he had set up and was looking forward to a break. Mark was by far the more experienced climber of the two of us and up to this point he had led each pitch. But he announced that he was tired of leading and put the rack over my shoulder and motioned me upward. I had never led trad. Ever. But fair enough I thought, he shouldn’t have to do all the work and I started climbing again (actually I thought he was out of his fucking mind). I remember looking down at one point and seeing that the last piece of protection I had placed had popped out of the crack I placed it in. If I fell it was going to be a long fall. But fortunately the rest of the climb proceeded without incident. And on some of the higher pitches it hardly seemed a rope was necessary. Once on the summit we rappeled down to the couloir and shoe-skied (one of us a lot more gracefully than the other) a good chunk of the way down. That morning on the way up Mark had put a couple of cans of beer in a stream for us on the way back. I thought there was no way in hell we’d ever find them again but Mark magically steered us right to them. Two beers in a cold mountain stream for the conquering heroes to imbibe on the way down. Let me tell you. Sometimes a beer is just a beer. But other times……..There is a Jewish religious ritual of watching over the body of a deceased person from the time of death until burial. The people who perform this task are called shomrim. Traditionally, shomrim read Psalms or the book of Job. Shomrim are also encouraged to meditate, pray, and read spiritual texts, or texts about death. Shomrim are prohibited from eating, drinking, or doing anything remotely fun while performing their duties out of respect for the dead, who can no longer do these things. Well let me just throw this out there. I can no longer read Torah but get immeasurable joy from hearing others, especially those I have tutored, do so. Please feel free to read Torah to me. And anyone who I have tutored knows that Torah study and tea drinking are synonymous. For those who sit Shomer for me, what you read I will leave up to you but partaking of the cuppa while reading it is mandatory.As I said initially, I have a lot easier time approaching things knowing there is a plan. The end is no exception. Planning for it beats staring into the void and hoping against hope that you’ll somehow just be able to hang on. At some point, one way or another, you’re going to have to work your way in a generally upward direction. That’s the only way you’re going to get to that cold beer. It would be false bravado to pretend that I’m not a tad apprehensive about what lies ahead but I think embracing the inevitability of it is the hard part. Two years ago I was having my best cycling year ever. Going on 200 mile rides on my days off just for the hell of it, competing in 24 hour rides. Nothing seemed beyond my reach. Then in the relative blink of an eye it seemed that we were making plans of a very different sort. But like the climb, once you’ve moved on from the “how the fuck did I get here” moment, everything else is comparatively easy.Raif, a long (long) time family friend and Bar Mitzvah tutor of two of our children is now a Rabbi and lives in LA. He was in town with his wife and daughter visiting family and came by for tea. We talked of many things including some of the challenges of being a new Rabbi (well Raif and Jessica his wife talked while I typed my questions and responses back to them). Invariably we discussed Torah because, well, we always do. He has an associate who had written extensively on Torah interpretation and what exactly the bible says and does not say on the subject of homosexuality. A subject close to my heart. I asked if he could send me some of his writings. As I did so it occurred to me that it had been a long time since I’ve actively sought out new learning. I’ve been kind of stuck at the endpoint for a while. It’s been a heavy couple of weeks and I’m ready to move on to something new now. Cheers
Rae and I never intended to stay in Urbana. After working and saving for three years, in July of 1986 we set off to travel the world and find the perfect place to live. During our travels we had just one rule. And that was that we could never buy any return tickets. This seemed like a great idea at the time. It kept us exploring new places. However, one major drawback to this grand idea, which in retrospect seems so obvious, was that after three years of traveling we had completely circumnavigated the globe and ended up right back where we started. Although the significance of this eluded me at the time. As far as I was concerened I had been condemned to live in Urbana.
August 21, 1986. Everett WA. When we set off on our travels we had no idea how long we would be gone. We had saved a certain amount of money and planned to travel till it ran out. Given our finite resources we would often go to extraordinary lengths to avoid having to pay for spending the night somewhere. Our two person Jansport tent had sprung a leak around the window and we happened to be near the manufacture in Everett so we took it in for repairs. They said there would be no problem and we could pick it up the following day. We asked if there was anywhere around we could spend the night given that we wouldn’t have a tent. The woman mentioned a small one room lodge in the nearby back country that had a 360 degree view of the mountains. It was maintained by a local alpine club and was well worth the hike if we were up to it. She didn’t think anyone would be using it at this time of year and gave us directions to the road to the trailhead. She may have mentioned something about distance but all I heard was “free” and blocked out everything else.
So there we were driving a small Mazda GLC on a rutted mountain trail and after we had bottomed out a few times it became obvious we were ill equipped for the terrain and considered turning back. Unfortunately the road was too narrow to turn the car around. I thought about asking Rae to get out and walk so that the car wouldn’t be so heavy but intuitively knew that this might be something I might come to regret for approximately the rest of my life. We men are smart that way. Our only options were reversing back down the mountain or forging on and hoping we didn’t lose any critical parts off the bottom of the car. So on we went. Eventually we arrived at the trailhead and by some miracle the exhaust was still attached. The woman in the Jansport office had told us that once we hiked above the trees we would be able to see the hut. In retrospect it was either a tremendous leap of faith or the height of stupidity. We had no map, no tent, no idea how far we would be going, for some reason took no food and went hiking into the Cascades. But until recently that was how Rae and I did everything. We didn’t plan. We just did.
When we left on our grand adventure we had a wish list of places we thought it might be great to see, like the Taj Mahal, Kathmandu or the Pyramids for instance. The sort of places that have a place in our collective consciousness. You anticipate ahead of time that these places will be magical by their reputation. But often times, by far the most magical places you find are those you stumble upon quite accidentally, because you’re so damn cheap. Over the course of our travels there were far more of the latter than the former. The woman from the Jansport store was right of course. Once we got above the trees we saw a speck on a ridge which thankfully turned out to be the lodge. The interior of the lodge was “rustic” to say the least. But of course none of that mattered because it had a roof. And….. even more importantly, we found a can of sardines on a shelf. And while we hadn’t brought much else, we did bring my Swiss Army knife and were able to access the contents of the can. We briefly pondered the thought that the sardines might have been put there purposefully by someone who would be coming back later. But that didn’t stop us from devouring them. Then we just chilled in awe of our surroundings, not quite believing our good fortune. Prior to this we had been sleeping in the back of the car in rest stops. Now we were in the mountains watching the sun set over the Pacific.
All night the wind howled around our lofty perch. There’s nothing quite like the sound of the elements at your ear when you are dry and warm inside. Another thing we didn’t do on a regular basis while traveling was bathe. We would occasionally sneak into a campsite and use their showers but that was the extent of it. Now we had the whole outdoors to ourselves. And the water was, shall we say, invigorating. It was a magical 24 hours and my memories of that day are as clear as the water we bathed in. I dare say if we’d had any food we would have stayed longer. But we had to get back to Everett to pick up our tent. And that night we were again sleeping in the back of the car by the roadside.
“Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS survive for 10 or more years.” Everyone who has ever been diagnosed with ALS knows this stat. Some sources say 2-4 years but you get the point. This shit doesn’t mess around. Initially you ponder, well, you could be in the “10 years or more” group. But then you have to consider do you want it to go fast or slow? It’s so hard to know what to wish for. I doubt that anyone thinks “hey, maybe I’ll be in the two year group.” At our most recent visit with the neurologist Rae asked the doctor if he thought the disease was moving fast. He paused for a moment before answering. Although I have no broad knowledge base to draw from I already knew the answer to the question. I think Rae did too. I have even been asked by friends if I thought it seemed to have started moving faster. That isn’t the sort of question people ask just to make casual chit-chat. Eventually the doctor said he has seen it move faster but yes in my case it does appear to be gaining ground pretty fast. In its strictest sense this sucks. But on a practical level there are some advantages to having this knowledge. Above all I want Rae to be able to afford to stay in the house after I’m gone. So I don’t want to spend a huge amount of money remodeling the house if I’m not going to get much use out of it. Any modifications we make have to have a broader application beyond getting me in the door and to and from the bloody loo.
February 1st, 2016. Urbana, IL. Warmed up enough for me to go out for a 40 mile ride on the trike today. When we went on the cross country bike ride last year I signed up for Strava (a website and mobile app used to track athletic activity via GPS) so that people could follow our progress each day. If you signed up to follow me you would get a notification every time I logged a ride. This was all very well when we were doing 100 miles a day and averaging 19-20 m.p.h. But things have changed a tad since then. Today I rode 40 miles and I’m not even going to reveal my average speed. If you’re following on Strava you know already. I have been considering deactivating the account because, to be honest, I’m embarrassed by some of the stats. But our good friend Ian (who came on the ride with us) talked me out of it. He said that he enjoyed getting periodic notifications of my cycling activities. It saved him from having to check the obituaries.
People have a variety of reactions when I try to talk. Sometimes they will stare intensely at my lips, moving their own lips, mouthing what they think I’m saying. Some people just nod and smile obliviously. Some people just talk continuously in the hope I won’t try to say anything. Sophia though is another thing altogether. It’s as if guessing what I’m saying is her task on a game show. And the clock is ticking and she has a limited amount of time. It usually goes something like this. Me: “phlugh blugh flung brah.” Sophia: “You want to eat? No, you want tea? You want, umm, has two syllables, sounds like. Sounds like coffee? You want food?” All the while getting more animated and excited with each guess. Then with a look of smug self satisfaction she’ll announce “Got it! You want to come with me to the mall.” Then for good measure will add “Damn, I’m good.” This afternoon at the mall we stopped in the food court for a Pepsi and some ice cream. Then between bites Sophia looked up at me and said “you would have hated getting old anyway.” This is an astute but harsh observation for your own daughter to have to make. She is right of course. As a nurse I have seen the toll that the prolonged mental and physical decline of a loved one can take on a family. One by one, faculties leave, till its hard to remember who the person once was. And so much of what happens towards the end is taken from our control.
Is this what I wanted? Obviously not. I want to be there for our kids, I want our grandson to have memories of me. I would see old couples walking in the park and think that would be me and Rae one day. But such things we do not get to choose. However, as I said before, it’s often the things we don’t plan that turn out to be the most suprising. I think early on I may have said I had an admiration for the purity of ALS. How for all our knowledge of the human body there is so little we know about this disease. I think I may have even been pissed off that there was so little the medical establishment could offer me in the way of treatment. But once you get over that you realize how much easier it is to plan your life when you don’t have options. Within the parameters of the ever increasing speed the disease is moving I have been presented with the opportunity to be the author of my own final chapter. And as George once sang “Nothing in this life that I’ve been trying, could equal or surpass the art of dying.”
When we left on our travels I said that we went looking for the perfect place to live. We now live two blocks away from that house that we left some thirty years ago. There are no mountains in our back yard as we had once imagined there might be. No beach down the street or house on a hill surrounded by acres of greenery. But there are people, family and friends, and while it took us some time to figure this out, that’s the most important thing in the world. And whenever I lament my inability to escape from Urbana I think of one of my favorite quotes from a poem by T.S. Elliot:
Any dinner guest at our house knows that before we can eat we have to take a picture (or three). One of the first things Jack learned (even before walking or talking) was to look at the camera. I think it started with me taking pictures of large gatherings such as Thanksgiving or Passover but over time expanded to include any meal that was more than just us and the kids. But eventually, as the kids grew and were home less frequently, when they were home, it became a moment worthy of documentation. I have always thought that sitting down to eat is a special moment in time. A unique gathering of family and friends that should be marked in some way. And since Norman Rockwell is no longer available a photo would have to suffice.
We have been back from the ride over two months now and it has been five months since I stopped working and went on disability. Prior to this I could never really conceive of not working. I mean, what would I do? I’m a workaholic. I often pondered how I would fill my days and just assumed I would work till I dropped. Maybe come up with some major renovation project on the house. But now here we are. It’s not exactly the golden retirement we dreamt of. And as with many things, when the time actually arrived you see it differently than anticipated. I don’t really enjoy breakfast. It’s been swallowed up by the morning ritual of “getting ready for the day.” All contingencies have to be planned for. Especially if Rae is going to work. Clothing I might need if I want to leave the house, food I might want in case by some miracle I feel hungry (which hasn’t happened in a long time). But supper is the highlight of my day. Supper is just that. Supper. Nothing to plan other than what to eat. And really it’s more about sharing the moment than the food. We don’t even have to be interacting. I can watch Rae cook or I can play with Jack. When it comes down to it that’s what I enjoy most about the time we have now. The sharing of it. Everything from eating together to looking at Rae’s face by the soft blue glow of her cellphone as she plays Words With Friends or checks Facebook in the middle of the night when she can’t sleep.
One of the things Rae said early on is that we have to laugh every day. Trying to interpret what I’m saying has become the inadvertent source of a great deal of that laughter. A lot of what goes into understanding what I’m saying is more about knowing the context and filling in the blanks rather than actually understanding what the hell I said. As long as I never change subject we’re good. But go from what’s for supper to say, the upcoming Iowa caucuses and we’re in trouble. “Wait, you want bottled rump with burning panders from the distillery?”
People ask why I don’t use my voice machine. I have been accused of being stubborn and not getting help when it’s obvious that I need it. Maybe stubbornness is a factor. Ok, well maybe not maybe. But each time I let go of something it’s not like I’m getting help till it gets better. Everytime I let go of something it’s gone forever. There is no getting used to a certain level of function and regrouping. Things are always changing. Sometimes faster than we can adapt. My voice (if you can still call it that) is long gone but I still cling to the illusion that the sounds I make can be used to comunicate. My voice was always quiet (like really quiet). Ever since I can remember, people seemed to have had an opinion about it. Even back in school classmates and teachers alike would often call me, “Mr. Mumble.” As an adult, people seemed to be divided into two camps: There were those who found my voice calming and reassuring, and there were those who genuinely believed that I spoke that quietly for the sole purpose of pissing them off. But regardless of where you stood, for better or worse my voice probably came to define me more than any other characteristic or personality trait. It was part of who I was. Soon, the ability to make any sound will be taken from me altogether. Until that time I’m not letting go. Sorry.
I’m a spoiled brat when it comes to my coffee. Lisa used to be the manager of a coffee shop. I would text her in the morning when I got off work and by the time I got to the coffee shop my cappuccino would be waiting for me just how I like it. To say that I like my hot beverages a certain way would be an understatement. When a cappuccino is placed before me I will pick it up and by its weight alone I will make a judgment. Before it has even reached my lips I have decided whether or not I’m going to like the taste of it. Now of course, since Rae can’t follow me everywhere I go to translate or make shit up (or do an interpretive dance of what she thinks I said), necessity dictates that I be predictable whenever I go out for coffee. So once again my cappuccino is waiting for me when I get to the counter. I must admit that while the circumstances may be a bit of a drag I do enjoy this.
And don’t get me started on hot tea. There is only one way and Doc Brown said it more eloquently than I ever could. There is profanity but if you want to know “The way” click here.
One of the first foods I found myself unable to eat was lettuce. It just kept getting stuck to the roof of my mouth and my tongue lacked the flexibility to dislodge it. When Sophia was getting ready to drive back to school this weekend Rae made her a cheese and lettuce sandwich on fresh pita bread for the road. It looked so good that I had to take a bite. But as I picked it up Rae said “you know you can’t eat lettuce, Ray. You’ll choke.” I held the fresh pita bread, eyeing it longingly. Sophia looked on mischievously and interjected “defy limits,Dad.”
Have I mentioned we’ll be at Carnegie Hall this Friday? The MDA is launching a new fundraising platform called “Live Unlimited” and we are one of the families being featured. Living unlimited is going to mean different things to different people. And had you asked me a year ago what it meant to me to live unlimited I’m sure my response would have included something involving vast amounts of cycling. But now I see it as something a little more intimate. While I can still ride, I need Rae to help me get my riding clothes on and off. It’s hard being the one who needs everything and can’t give much back. It’s beyond hard. There is the inclination to think that one partner’s life is on hold while they care for the other. But as Rae said “My life isn’t on hold, this is just the next phase of our life together.” Perhaps to share this time, navigating an unpredictable final chapter, caring, eating, being together. This is perhaps the greatest expression of the human spirit. This is what it means to me to live unlimited.
Peace, love and midwives
P.S. The event will stream live from Carnegie Hall on Friday January 29th at 12:30 New York time. Here’s the link if you want to watch. http://www.mda.org/launch
Songs are the bookmarks of our lives. The placeholders for the chapters of our past. From its first note a song can transport you to another time or place. Sometimes it’s a whole swath of life that a song can illuminate. A summer, a relationship, a place you went to school. And other times the place the song can take you to can be a small, private but intense place that no one but you knows of. As Karen once sang “Those old melodies still sound so good to me, as they melt the years away.” On Kibbutz Degania Bet where Rae and I first met there were separate sleeping areas for male and female volunteers. Not to be thwarted we found a small storage cupboard above the bathroom in her room. It was big enough for a small 6 x 4 foot piece of foam mattress. To get up there we had to open the window in the bathroom door, then climbing on the table put our foot in the bathroom window and step up to the cupboard above, close the doors behind us and we were home.For the longest time no one knew where we were sleeping. People knew we were together but our beds were always empty. It was my snoring during an afternoon nap that eventually gave us away. From then on we were known as “the cupboard family.” Our first mutual favorite album was London Calling by The Clash. There is a line in the song that goes “Come out of the cupboard, you boys and girls.” People would often serenade us as we walked by. Most couples have a song that is emblematic of the inception of their relationship. It’s “their song” so to speak. London Calling by The Clash is ours.
Eventually the kibbutz built expanded living quarters and Rae and I got our own room. The beds (I use the term loosely) on the kibbutz were ancient metal frames with a worn out metal lattice that sagged in the middle. They were not the most conducive to a good nights sleep. So we put two foam mattresses together on the floor as our bed. The floor has been our bed ever since. But because of weakening upper body and core strength getting up from a mattress on the floor has not been easy for me for some time. If anyone heard me trying to get out of bed in the morning they could be forgiven for thinking someone in the room was trying to benchpress 300 lb. Some abilities I relinquish voluntarily to ALS. Some abilities pass unnoticed, unmourned. I just find myself one day trying to remember when I last performed a certain task. Like cooking a meal for instance. But with some things I dig my heels in. Determined not to concede, despite often overwhelming evidence that the battle was lost long ago. Sleeping on the floor was one of those things. Rae and I have always slept on the floor. It’s one of the threads that stretch back through time and connect us to the beginning of our relationship. Today we finally bought a platform for our bed.
I visited my closet this morning. It’s not particularly big. It’s a lot taller than that cupboard we first lived in on the kibbutz but the floor space is smaller. It has a couple of rails to hang shirts and pants and a few shelves that I installed, myself, for t-shirts, shorts, underwear, cycling gear, old smart phones I’m sentimentally attached to, etc. If I had to I could probably stand in the closet but there wouldn’t be room for much else. I used to go there every night to get clothes out for work the next day. The majority of clothes I owned required some basic form of manual dexterity to get on and off. They had these things called buttons and zippers so it’s been a while since I have worn any of my old clothes. Necessity is requiring that I take my ALS chic to new heights. Manu bought me a shirt with magnetic buttons. When I take my clothes off before going to bed, now they stay where they land. Not because I’m a slob (although I’m not denying that I am) but because I need to know where everything is when I get up in the morning. And going through piles of clothes is no longer an option. Rae puts my laundry away and her categorizing system is very different than mine. I visited my closet this morning. It was like going home to London. I felt like a tourist in a strangely familiar place.
It’s been a little over two and a half months since I fell off my bike in Phoenix and broke my arm (along with six other bones). To celebrate feeling so good I decided to break it again. I was going up the stairs and tripped. I landed on my elbow. My legs are strong so it wasn’t a balance issue. I was just clumsy. I know I need to be careful and when I come down stairs I always make sure the back of my heel comes into contact with the stair riser. I don’t really have a system for going up stairs. And besides, who the hell falls up the stairs? But even if I had a system it’s hard to be “on” all the time. Luci (who came on the ride with us) and Josh (Rae’s brother) are visiting from Minneapolis. Luci said that I look a lot better than the last time I broke my arm. The fact that that is even a sentence is a problem. On the plus side I’m already on blood thinners.
Life is full of stumbling blocks. Some are physical, some are psychological. Some are trivial and some can seem like the Great Wall Of China when first encountered. I assure you that when I was diagnosed with ALS the first thing that came to mind was not “oh what a wonderful growth experience this will be for me and Rae.” The day before I re-broke my arm I recall thinking about how well things were going. When I stumble I can no longer control how I land physically. Where I land psychologically is another matter. This month Rae and I will have been together 34 years and married 33. Our relationship has been a lot of things over that time but always perfect has not been one of them. When a relationship is new, its ups and downs tend to be more wild and pronounced. The longer you are together the state of the relationship tends to gradually ebb and flow rather than oscillate wildly. Many years ago I recall a work colleague, whose second marriage had just ended after a little more than a year, asking me what our secret was. “How do you and Rae do it?” She asked. My response shocked her. I said that in the time they had been dating, gotten married and divorced Rae and I had barely been talking to one another.
Relationships don’t have to be perfect to work. We were talking the other day and Rae said that if she had to define our relationship in a word it would be “easy.” She was quick to add that by easy she didn’t mean not hard but easy as in easygoing or relaxed. How we travel is an good example. When we go places we generally have no plan or agenda. We just go. No timetable other than when we have to be back but even that was generally fluid. We have always just made it up as we went along without too much discussion. If I need us to make a detour so that I can get some Starbucks that’s ok. If Rae wants to go on a quest for Tupelo honey that’s ok. I don’t think that being in love means loving someone every second of every day. I think that being in love means that no matter how much shit your relationship might be embroiled in at any given time you never loose faith that it’ll work out in the end.
When Lisa was pregnant with Jack she asked what I wanted to be called. The grandparents in Rae’s family have always gone by Bubbie and Zedie (Yiddish for grandma and grandpa). Rae was eager to assume the mantel of Bubbiedom. But I wasn’t crazy about Zedie. And Grandpa was just too generic. I wanted something unique to our family. Something only I would be called so decided upon saba (the Hebrew for grandfather). For now we are “Bubee” and “Bahbah.” That’s close enough for me. Most songs bring back a moment from the past. Some songs have a peculiar way of shining a beacon into the unknown of the future. When Jack was first born I made lots of slide shows and kept using “Hero” by “Family Of The Year” as the music. The song has become emblematic to me of the saba that Jack will never know.
I think that like most couples who have been together for a long time Rae and I have really only ever had one real argument. We may have had it a 1000 times over, but only one real argument. If I look back to where we were as a couple 18 months ago compared to where we are now we are more cohesive than I could ever have imagined. You’d be surprised how trivial most things can seem when you’re forced to decide what really matters. It’s like we’re traveling. Things that need to happen just happen without too much discussion. We are on a journey but unlike many previous trips we know the destination. There is however no road map for how we get there. I’m sure we’ll come up with something and it will undoubtedly involve a lot of Starbucks detours and–not to mention–have a bitching soundtrack. We stumbled up.
One of the first blogs I posted back in September was called “To Live And Ride With ALS.” My lofty goal was to answer the question what effect does ALS have on cycling and visa versa. In fact, that was initially one of the main points of the blog. I kind of got side tracked by life. When I look back at that original post, it’s hard not to see the inevitability of what happened. I was falling off my bike on wide open, flat roads with no obstacles. I thought I could overcome these things with mechanical modifications to the bike and prosthetics for my arm. Since we have been back I’ve gotten back into my regular routine of various doctors appointments. I went to see an orthopedic doctor a few weeks ago to see how my arm was healing. He was happy with how the x-ray looked. It showed new bone growth over the fracture so he just said to come back and see him in six weeks. And as we were leaving he added “and try not to fall.” Damn it I thought. Why couldn’t someone have told me that before the ride.
One of my favorite things about the trike is that when I come to a stop, there I am. I don’t have to clip out of the peddles, I just sit there. I can sit and drink my cappuccino or just watch the world go by or invariably both. It’s the trike equivalent of idling (but without the greenhouse gas emissions). Got my first flat tire on the new trike. My first thought was to call Rae but then I thought well, what if this had happened while out in the country. I need to know if I can still change a flat. Fortunately the flat happened out by the Temple so I was able to pull the trike inside. My hands work better in the warm. I got the back wheel and the tire off by myself but was thwarted by the valve on the inner tube. I went to see if anyone in the office had a pair of pliers. The Rabbi and his wife (also a Rabbi) were both there and offered to help. Rabbi Jody got the tube off but then my pump wouldn’t work. So while Rabbi Alan went to their nearby home to get a pump from the garage, Rabbi Jody installed the tube and put the wheel back on. After Rabbi Alan returned with the pump he reinflated the tire and my trike was roadworthy again. I mention this incident solely because I’m fairly certain that at some point in the history of the universe a Talmudic scholar somewhere must have pondered the question: How many Rabbis does it take to change a trike tire?
Before I continue I want to re emphasize that any advise I have to offer is based on a study group of one on the subject of a disease that affects everyone differently. With that in mind this is the sum of what I think I think I know about ALS and cycling. A higher level of fitness does not dictate the speed of progression of the disease. However, it does provide a cushion for whatever that speed is going to be. At least in the initial phase of things. After the accident I was fairly sedentary for a few weeks as we drove across country. I feel that I lost more ground in that short time than in the ten months prior. ALS does not respect physical fitness (not even remotely) but it does seem to prey on inactivity. That being said, I think that going gangbusters every day doesn’t help either. Just because you can ride a certain distance at a certain speed doesn’t mean you should. After exercise your body is going to need longer to reset. To maintain maximal ability for as long as possible you have to find a place that you can live with that is below your potential. That is going to be hard for someone who is used to pushing their limits. But you can either voluntarily relinquish the outer boundaries of your capability or they will be swiftly and mercilessly taken from you along with the midrange ability.
Now, let’s talk about cycling and the ALS symptoms that no one tells you about. Excessive salivation and yawning. Both can make for awkward moments socially but also present their own unique issues with cycling. Sometimes my body produces so much saliva I feel like I’m drowning in it. Out on the road what were once snotcicles have now become droolcicles. A healthy application of lip balm before each ride will help prevent your lower lip from cracking and falling off. Now on to the yawning issue. By excessive yawning I don’t mean quantity, although that is an issue, I mean yawning so intensely that it feels like your jaw is going to have to disconnect in order to accommodate the full course of the yawn. These are not yawns you can stifle, and come in groups of way too many. One moment a person is having an intelligent conversation with you and the next moment they’re staring at your esophagus. You try to reassure them “No, really. I find that all totally fascinaaaaaaaaaaawwwwwwwnnnnn.” After about the sixth time I think they have a hard time not taking it personally. You’d think this wouldn’t be an issue out in the middle of nowhere on a bike. But it always seems to happen when I’m approaching a cloud of bugs. There I am happily enjoying the passing scenery and then suddenly I’m involuntarily doing my best impersonation of a humpback whale harvesting krill.
ALS has succeeded in doing something that no other force in the world has been able to do. It has made me a sociable rider. In general I can go several years without riding with a single other person, outside of organized races. Friends would occasionally ask if they could come for a ride with me. I was never sure if they were serious or just making conversation so I would pause, not knowing how to respond. Then Rae would save me and tell them “you wouldn’t be able to keep up.” Sometimes they would persist. “Oh, he’ll slow down for me, we’ve known one another forever.” Another pause until Rae would again save me, adding more bluntly “No he won’t.”
As you can imagine from the above photo we were the cycling safety people’s poster children. Until recently this was probably the last time I had ridden with Sophia. I would stand in the pedals and Manu would hold on to me as we rode. I have been told that I was seen riding around the neighborhood in the rain with all the kids, steering the bike with one hand and holding an umbrella with the other. I don’t recall doing this but lack the credibility to deny it. Then the other day, out of the blue, Sophia asks if she can come for a ride next time I go. I wasn’t sure if she actually wanted to ride or was put up to it by Rae to keep an eye on me. Either way, don’t ever say no to a kid who wants to ride with you. Don’t even hesitate. Not even for a nanosecond. And if you are lucky they might come with you again.
Many moons ago before Lisa could drive I was giving her boyfriend a lift home. They sat together in the back seat. Her boyfriend was on the high school wrestling team and was talking about all the things he had to do to maintain weight to compete in a category. He spoke highly of a person on the team who held the weight loss record for losing seven pounds in a week in order to compete in a certain class. Ever the weight conscious one Lisa seemed impressed by this. So I chimed in that I had once lost ten pounds in one day when I rode a solo double century. I thought Lisa would be impressed but instead, all she said was “You don’t count dad. You’re a freak.”Over the winter I’m riding to maintain a certain baseline level of ability. Come Spring it takes five rides (30, 50, 40, 80 and 100 miles respectively) to work up to 100 miles and that’s where I stay for the rest of the year. Winter has been kind so far but the furthest I’ve ridden since our return is 50 miles and I’m becoming unsure how much, if at all, I’m going to be able to expand upon that come Spring. So the question is; what exactly am I training for? For the first time since I can remember I have no ridiculous summer rides planned. As I mentioned in a previous post, I keep a journal. One of my yearly rituals each New Year is to make predictions for the upcoming year. I have been looking back at them over the last ten years or so and am suprised by their quaint naiveté. Most of the time my predictions were way off the mark. Even with things that seemed fairly inevitable at the time. The future is like that. That’s why they call it the future. Now looking into the future is like looking through binoculars and adjusting the focus. The further down the road we get, the more into focus what lies ahead is becoming. The jury is still out as to whether that’s better than quaint naiveté.
Did I say I have no ridiculous summer rides planned? Ok, so anyone who knows me well enough will know that’s not totally true. There are certain things I would like to do and will plan to do until my body notifies me otherwise. Generally that takes about three or four memos (and a concussion) for me to pay attention. My respiratory capacity is significantly diminished. At first I just attributed it to the accident, broken ribs, partially collapsed lung, etc. But while those things have resolved, my lung capacity does not appear to have recovered from the effects of diminished use. So if anything, I’m riding to breathe. To fill every reachable alveola with O2 that my weakening diaphragm and intercostal muscles will allow. I used to be fond of saying that I live to ride. Now I ride to live.
It was December 15th of 2014 that the possibility I might have ALS was first suggested. It was confirmed, well, as much as you can confirm ALS, a couple of weeks later. Then of course we had to tell people. We thought it better they heard directly from us rather than social media. Telling people was surprisingly draining. You never knew how people were going to take it. Some people, Rae and I told together if they lived close enough. Others we had to tell by phone or Skype. I had to limit myself to telling one person per day. It was all I could handle. Rae once told three people in a single day. I don’t know how she did it. For me just saying the words “I have ALS” was difficult to get out. I would often choke as I tried to say the words and it sometimes took several attempts. Since that initial flurry of telling people last January I have not repeated those words. Not once.
Telling my partners at work was hard. I told them I thought it would be for the best if I stopped taking call and delivering babies since it was my hands that were most affected. Instead I would just work in the clinic focusing on prenatal and gynecological care. I didn’t have a timeframe for how long I would continue to work but suggested I work for a year or so and see where we were at the beginning of 2016 and reevaluate then. There was nothing special about the timeframe of one year it just seemed reasonable at the time. And to be honest I thought I was going to be the guy with ALS that just kept on going. I made it to August.
Eating is always an adventure. Rae and Sophia have independently developed a set of subtle hand signals to indicate to me that I have food hanging off my face. Lisa is more direct and will announce across the table “hey Dad, you have a chunk of cheese in your beard.” I’m sure it’s just a matter of time before they just start to hose me down at the end of each meal. I’m always the last to finish eating, by far, and the kitchen is generally being cleaned up around me while I valiantly chew on. The other night I was so worn out after supper that I couldn’t even be bothered rearranging the dishes in the dish machine after everyone was done cleaning. I just sat there, watching others put the dishes in the washer. Fighting this subconscious battle between one side of my brain that wanted to yell “Noooooo! That’s not where the bowls go. And even if they did, they would face the other bloody way” While another voice in my head kept trying to quietly convince me “Let it go Ray. Just let it go.”
Manu (our son) and I often went into the mountains together. One of our first wilderness experiences was in Colorado near Ouray in 2004. We climbed Mount Sneffels, our first 14,000 ft mountain together. We hiked in and camped in the wilderness then summited the following morning. There are many things one has to know about overnighting in the back country and many of them revolve around bodily functions. The hole you dig has to be a certain depth, the place has to be a minimum distance from any body of water, you can’t just leave toilet paper there to blow around, etc. We told our two eldest kids on New Years Day of this year that I have ALS. Lisa called her husband and later admitted her first thought was that this might be something she would have to worry about her son Jack inheriting. Manu just got up and left the room. He teaches high school biology in Chicago and had taught his class about ALS during the first ice bucket challenges. Figured if people were going to take the challenge they should know a little about the disease. When he didn’t come back I went looking for him. I found him in his room. All he could say through his tears was “who’s going to teach Jack to poop in the wilderness?”
I used to get so impatient with Rae as she selected an outfit before going out. And I never understood why my opinion was sought. Offering the asked for opinion is generally a no win situation. “No, really. The first outfit you tried on was fine.” Or “Ok, yes. It makes you look fat. Can we go now?” But now, even if I had a half hour head start Rae can still get ready faster than me. I can still dress myself (not really). I’ve developed a sort of ALS chic wardrobe. Magnetic zippers, elastic sweatpants, mittens, infinity scarfs, loose tops that I can slip on over my head, zipper inserts where my laces used to be, slings for my arm for when no one is around to put my hand in my pocket for me. The theme for this years Hanukah gifts was in Sophia’s words to “shishi poopoo-ify” my ALS wardrobe. Pictures to follow. When I’m alone I have one shot at getting dressed. If I have to do it again the whole morning is gone. The most amazing thing to me really is how quickly I have let go of the need to dress myself. Helping me dress (or adjusting things I’ve attempted to put on myself) has just become part of everyones morning routine. I hope it will be as easy to let go of other things when the time comes.
I told my sister in London about the diagnosis via Skype. It was a half hour call of which I think 15 minutes was spent just staring in silence at one another. People often say they don’t know what to say. But I’m the one going through it and I don’t know what to say either. Our daughter Sophia sat there in silence when we told her also. Then she got up and said she was going for a walk. When she came back she announced to everyone that she just wasn’t going to deal with it until she had to. At the time I recall thinking she was in denial. But she now often matter of factly takes care of the little things that I think no one else notices. Like asking someone for a cloth napkin when we were out because there’s cheese and crackers on the table and she knows I would like some. There are certain foods I should no longer be eating, at least not without a drop cloth or at the very least someone trained in the Heimlich maneuver in the room. Cheese and crackers are on that list. But Sophia has my back. The quiet ease with which friends and family have integrated accommodating my rapidly evolving needs into a new normalcy has done a lot to allay my fears about many things. Sometimes I think we’re our own worst enemy when it comes to imagining the future.
Our house is almost 100 years old and unfortunately does not have a downstairs bathroom. To put in a chair lift going up the stairs would not be cheap. We had a contractor come look into the possibility of putting on an extension to the house but before he even set foot inside, the term “prohibitively expensive” was uttered. A house this old has to have lead paint somewhere and removing that is not a trivial endeavor. There is a small sun room that might possibly accommodate an indoor portable handicap shower (easy to assemble without any tools apparently) and our daughter Sophia, who will graduate next year with a degree in Environmental Studies, thinks that an indoor composting toilet is the way to go. We have looked into moving into or renting other houses but when it comes down to it, this is our home. It’s where we raised our family. Every nook and cranny of the house says something about us. This is where we have had countless Passover Seders, deck gatherings, kids’ birthday parties. There are visions of our past everywhere you turn. Now I also have to contend with visions of myself, immobile in a chair in the living room. My future self staring back at me like a ghostly apparition.
When we told people about the diagnosis you could tell the people who had no idea what ALS was. They would call back the next day after they’d looked it up and say well, fuck. To be fair, I also looked it up myself just to make sure there wasn’t some another type of ALS out there. One that would go away with antibiotics. One year. When we were up in Chicago for our anniversary in January we passed a bus stop adorned with a poster that posed an interesting question. “Where will I stand this time next year?” I’m guessing I would normally have just walked on by but in this instance I asked Rae to take a picture of me next to it. Another of the rules Manu had to learn for hiking in the wilderness is that legs should always be a minimum of a 18 inches apart for pictures. We call this the “stance of power.” There would be no pictures of anyone I was related to on a mountaintop with their feet next to one another. Sorry, not happening. You need to look like you just conquered a peak, not like you need to take a leak. For the picture in Chicago I consciously planted my legs slightly apart. I probably overdid the stance of power thing but it was a statement. The world of ALS was new to us and I was thinking that in one year I’d be happy to be standing anywhere.
But here we are, one year down the road. Still standing. A little bruised and battered and worse for wear and tear but standing none the less. The thing about mountaineering or biking adventures is that you have to make an effort to go on them. Our life has become a daily adventure but this adventure is one that has come to us. And keeps coming.
My brain has no filter. All of the things that pass before me, from the earth shattering to the inconsequentially trivial, just seems to get lodged permanently in my brain. I don’t make any special effort to memorize things, it just happens. I have often pondered why this is. I think it all has to do with some subconscious process of cataloging by association. Everything is connected somehow. This is all well and fine when studying in school. It was easy to remember lectures. But can you imagine being in a relationship with someone for thirty plus years who remembers every word you ever said to them? Every movie you ever saw, who you were with, which theater. That being said, having a good memory is really all a matter of perspective. Rae says having a good memory means knowing what to forget.
April 18th, 1988. Kibbutz Matzuva, Israel. At the time, we were about two months into an intensive Hebrew course on Kibbutz Matzuva in the northern Galilee. It was an average morning in class spent wondering what on earth the teacher was talking about. I never understood why they made us start class at 6:00. I was always too busy thinking about food and watching the clock to learn anything. This morning, I recall time was going particularly slowly, it seemed that the hands of the clock were on strike. When 6:30 finally did creep around, I ran back to our room, but Rae had not gotten out of her class yet. Rather than going to the dining hall for breakfast, I thought I would prepare a couple of bowls of fruit salad from what we had left in the fridge. Rae arrived a few minutes later and we sat on the steps outside our room to eat in the balmy early morning sun. By the time we had finished with breakfast and had cleaned up, it was 6:55. We had five minutes to spare before class started again. I don’t recall if it was my idea or Rae’s, or whether it was one of those times when we just looked into each other’s eyes and had the same idea at the same time, but a few minutes later we were running down the path to the classrooms and yes, we made it to class by 7:00.
Nine months later in London on the morning of January 20th, food was the last thing on my mind. Rae was curled up on a beanbag in front of me. Neither of us had slept a wink the previous night. All I could think of was that, maybe, she would go through just one contraction without asking me to massage her back so that, maybe, I could get ten minutes sleep, or five minutes, anything. I had begun to wonder if she was doing this to me deliberately. That if she was going to “suffer” she wasn’t going to do it alone. Finally, at 1:26 p.m., after 13 hours of hard work, as if by magic, a head appeared where a second ago there wasn’t one. Shortly there followed two arms, a body and two legs. If I had not seen it with my own eyes, I would never have believed it. Actually, even though I did see it, I still don’t believe it. Rae was reaching out with both hands, tears in her eyes, to hold the baby: “Come to Mommy, come to Mommy.” With those simple words, a curtain was drawn in our lives separating all that had gone before and all that would come after.
Have taken the trike for a spin a couple of times since coming home. Normally at this time of year I’m exercising indoors but there’s this whole Ride for Ray thing that’s still going on. So am trying to do my part. I hope he appreciates it. I’ve ridden these roads countless times but the vantage point from the trike gives you a different perspective. Or maybe it’s just me that has a different perspective. Last time I rode here the corn was being harvested. Last time I rode here I had more functional body parts. I have spent the entire year training for this one huge event. Becoming acquainted with and working within limitations to achieve a goal. But now I find the limitations becoming more absolute and there is increasingly less leeway when it comes to working within them. My body has taken to defining its own limitations and I’m not being consulted. A cyclist pulled out onto the road ahead of me. Generally I would have watched his or her riding form for a few minutes before deciding whether or not to make the effort to catch up with them. But now it seems that watching their form is just a token gesture as they disappear off into the distance ahead of me.
To say that we were apprehensive about having a child would have been an understatement. I often hear people say they are not ready to have kids. Starting a family is probably the most insanely impractical thing we ever do to ourselves. Those of us who think we’re ready to be parents are clearly delusional. That’s the Catch 22 of parenthood. Knowing you’re not ready is the first indication that you might actually be ready. Or as ready as it’s possible to be. The arrival of our daughter Lisa obviously had some drastic effects on our life. The focus of our world seemed to turn inwards. Prior to her arrival, we regularly went out to movies, pubs, parties and visited with friends, but after the birth we didn’t feel a need to go out. To play with the baby is all we ever wanted (other than more time to play with the baby). She would laugh, we would laugh back. She would babble, we would babble back. She would sleep, we would watch. When we finally started to go out on our own again, we would regularly phone home to see how Lisa was doing. The first big heartbreak of parenthood was hearing that she was quite alright without us.
Being a parent is like that. When you become a parent that is all you are. For so much time your identity ceases to exist outside of being someone’s mum or dad. Every decision you make involves consideration for multiple individuals. Perhaps initially when the kids are small your family is sort of a big blob that goes along with you. But gradually everyone develops their own interests and schedules that need to be taken into account. For decades this subconscious juggling act is part of your being. Then as time passes, one by one, the kids disappear off into the distance ahead. And suddenly one night you find yourself making phone calls to friends at three in the morning because the cat’s not home.
When the kids were small if we had no reason to get up, they would join us in bed. Sometimes we would read to them, sometimes they used us as a jungle gym and had a great time. We were all they needed to make them happy. We enjoyed those moments, but as joyful as these times were, there was also a hint of sadness involved. I was always aware that there would come a time when they wouldn’t want to play with us any more, or may not want to have anything to do with us at all. However, instead of letting these thoughts detract from such a rewarding experience, we are just thankful that we had children who, for a period of time, no matter how short it may now seem, let us share in their world.
Our children are part of us. Literally and figuratively. We provide the building blocks that make them. We pour every fiber of our being into raising them and hope that we give them enough to navigate the world without too much pain. I have previously said that I have no clue what goes into making a successful relationship. The same is true of parenting. There is an industry out there of parenting books and advice columns designed primarily, it seems, to make us feel incompetent. But each child is a unique expression of a human being that has never been before and never will be again. Life is too dynamic to be compartmentalized. Just because something works for someone else’s kid doesn’t mean it will work for yours. Our parenting experience is going to be different from yours but if I was going to offer advice I could sum it up in one word. Listen. Sounds simple but it’s not. We ask them why they do things but really we’re not asking to seek understanding. Their answer is often irrelevant. Our questions are too often just a vehicle to interview ourselves about why we disapprove of their actions or choices. Forego the rebuttal. Just listen. I recall spending a lot of time upset with the children when they would try to express their independence. I probably threatened them too. But of course, the only thing this succeeds in doing is driving them further away. Everyone who had been through this before with their kids tries to reassure you that one day the kids will come back. But at the time this helps not one iota. Did our kids come back as we were assured they would? Of course. Maybe a little more tattooed and pierced than before they went away but come back they do. And the time spent quarreling is such a waste of life. Listen.
Their is no road map to parenting. You do your best and hope you have made the right choices for them. Then one day something happens and you have a “yes!” moment. And you know you did right. I recall an event, many years ago, when Sophia, our youngest daughter, was still in middle school. The phone rang and Sophia who was closest to the phone picked it up. After listening for a moment she asked “Mr or Mrs?” She looked toward me as if about to say something but paused. She then turned back to the phone and said “He can’t come to the phone right now, he’s drinking his tea.”
October 22, 1987. Pokhara, Nepal. Our Nepalese trek started out innocently enough, sitting in a hotel room in Kathmandu reading through a book on trekking the Annapurna Range. Sounds like fun thought I. But sitting there in relative comfort it was difficult to imagine being 17,700 feet up in the Himalayas, in a bleak, silent, rocky landscape, squinting against the blinding glare of the sun on the snow, and pushing on step by step, as if in slow motion, exhausted and dizzy from lack of oxygen. By that point we were living a life stripped to the bare bones. All superfluous baggage, both physical and psychological, had been disposed of. We were unencumbered, free to move as we pleased (local politics permitting) with everything we owned on our backs. It seemed that the happier we were the less we needed. Does it follow that the unhappier we are the more we need? For four weeks we hiked up and down (and up and down again) through the mountains with only our legs to carry us. But all adventures must come to a close.
The last leg of our Himalayan trip was a water taxi across Lake Phewa. As the small boat neared the shore of Pokhara, our destination, the excitement I had initially felt at seeing the town in the distance was slowly turning to apprehension. Ahead lay all things we had been dreaming about for so long: a cold beer, a warm shower, a real bed. So why the sudden urge to turn back? All too soon, it seemed, the boat ran up to the bank. I looked back at Rae. I had expected her to be overjoyed at being back in civilization. When we initially got on the boat she had picked up an oar to help row. But she hadn’t moved. Hesitantly we picked up our backpacks, stepped ashore and walked up the grassy bank towards the road. There were so many people, cars, buildings, and sooo much noise. We hadn’t heard a motor in four weeks. It was almost as if we had just set foot on another planet. I looked back towards the lake but the boat had already left. With all other options denied us, and holding each others hands tightly we slowly walked back into the town we had left just four short weeks before, both realizing for the first time that our lives would probably never be the same again.
Rae and I travelled for almost three years on a quest to find the perfect place to live. While in Indonesia we took lessons in batiking. One of the batik pieces I made was a map of the world. We took it on our travels and whenever we stayed somewhere for more than a few nights we would hang the batik up on the wall. We would make a big deal of getting it out and hanging it up. “We’ve been in one place for three whole days, do you think we should put the batik up?” It was our way of saying this was home. A sign of familiarity in our ever-changing world.
November 24th, 2015. Southern Illinois. Prior to this trip, the Annapurna hike was probably the most challenging endeavor (outside of parenthood) that Rae and I had undertaken together. But now, this adventure too was coming to a close. As we drove further North the temperature had been getting colder. I put jeans on this morning for the first time since leaving Chicago last month in anticipation of our return. There was a hole in the knee which I didn’t recall being there the last time I wore them. Then I remembered I ripped them falling on the way to the airport. The ride could have been over before it begun. People keep asking if we’re anxious to get home? I want to say yes. I mean I know I should be. But I keep thinking no not really. This van has been our home for almost six weeks. Rae even decorated it with prayer flags as a sign of permanence.
As the mileage decreases between us and Urbana I find myself getting more apprehensive. Just as I did on that boat trip so many years ago. The names of the towns are becoming more familiar. Yes, there is something to be said about lying down on your own mattress and being enveloped by the comforting familiarity of your own bed. And not feeling the need to quickly pull back the sheets before laying down to check for bed bugs. But how do you know you’re home? The batik map of the world adorns the wall of what used to be my guitar practice room. I find the occasional child, home from college, asleep on the couch. And even though our eldest daughter and her family no longer live with us I still hear the incessant yapping of her chihuahua in my mind’s ear as I walk up the drive. When driving cross country Rae said she would make stories up about the lives of the people and the places we traveled through. But the closer we got to home the more we knew the stories. Here we know the people and places and the stories that go with them. We drove into town on Lincoln Avenue. But it’s not just Lincoln Avenue. It’s the parade route on the 4th of July. Eventually we turned onto our own street and felt the familiar rumble of the car tires on a brick street. Being home is that feeling, like sinking into your own mattress, but extending all around in every direction wherever you go and being enveloped by the comforting familiarity of knowing.
Every few days Facebook reminds me of something I posted on this day a number of years ago. “Ray, we care about you and the memories you share here” Facebook assures me, “We thought you might like to look back at this post from three years ago.” Three years ago on this day we were at a Leonard Cohen concert in Rosemont. These memories are a constant reminder of what seemed like a simpler time. Another world when time didn’t matter. But was life ever as simple as we recall? I have fond recollections of our Annapurna experience. But if I think about it I also recall walking a safe distance behind Rae because I was expecting her to turn around at any moment and start beating me with her walking stick for putting her through this. Just as with previous adventures, we know our lives will never be the same again. Now we have no more grand distractions and there are challenges we must face. Perhaps our greatest. But we will face it together like we have with all the others. Many of the scenarios and challenges that we now must face have been playing out in one form or another for countless generations. The circumstances may change but the challenges are in many ways the same. We have to continuously deal with our own faith and doubts about being up to the tasks placed before us. We have to weave a path between joy and despair, life and death, all the opposites and contraries. The same challenges play out over and over. This situation we’re all in doesn’t submit to a neat solution that you can put into a box and tie up with a pretty bow. The only thing we have any control over is how we face the problems. To say that life isn’t fair imbues it with a certain anthropomorphic sense of personality. Life isn’t fair or unfair. It just is.
But now we are home (locked out because we gave our keys to other people but home none the less).
Homeward bound. November 23, 2015. I’ve been receiving a great deal of kudos for completing the ride. But whether or not I finished the ride was to a large degree out of my hands. It was more dependent on the people with me. No matter how much I wanted to finish, if I hadn’t had the support of Rae and my fellow team members, I would not have made it to St. Augustine. This video is more of a tribute to all the people who have contributed to the successful conclusion of the ride.
With the miles being donated to “Ride for Ray” we are well over the amount needed to circle the globe with over 42,000 miles donated so far. But a ways away from getting to the moon. One of the riders has suggested an interim goal of riding as many miles as dollars donated. With the current donations at $57,700 against a goal of $75,000 we are well on the way and for those of us living in climates that are less than ideal, this may provide us with the extra incentive to get out and keep riding.
You know how it is when you have company for dinner or you’re just hanging and shooting the shit with friends and one of them says: “Have I told you the story about………?” And their story reminds you of a similar experience that you had and you want to share your story too. Well, it’s been a while since I’ve been able to share a story. At least verbally. I speak in short, concise, carefully worded sentences. And then only if there is no background noise and I know the person I’m speaking to. I will sometimes attempt communication with a stranger but only as a last resort. But seriously, does cappuccino really sound like cup of water? This blog has become my vehicle for telling stories. So if you have a moment there is a story I would like to share. Are you sitting comfortably? Then I shall begin.
August 11th, 1980. Tel Aviv, Israel. We got off the plane at Ben Gurion International Airport and stepped in the sweltering Middle Eastern summerheat. I had traveled to Israel with my good friend Brian. We made our way to the volunteer office and were randomly assigned to Kibbutz Degania Bet in the Jordan Valley. When Brian and I first arrived on Degania we discovered fairly quickly that among the volunteers there was a well-established hierarchy. You knew who the veteran volunteers were because they had fans in their rooms. The rest of us had to suffer through sleepless, suffocatingly hot and muggy nights. In England it was always so mild that I didn’t even need to open the bedroom window in the summer. But in Israel, when I got up in the morning my shape would be outlined in sweat on the mattress. One of the veteran volunteers whose fan I coveted was this American girl with the same name as me.But she resisted all attempts at socialization. Many years later she said that this was because she had a lot going on in her life and didn’t want to get involved in any new relationships. Relationships? All I wanted to do was to borrow her fan.
Two weeks later this girl left to meet with her parents who were vacationing in England at the time. I stayed on Degania for another nine months but eventually had to seek gainful employment off the kibbutz because I had spent my air fare home on a new tape deck.
October 18th, San Diego, CA.
When I look back at pictures of our departure from San Diego it seems as distant as the time that I arrived in Israel. We’ve all been on the road together for a little over a month but the west coast seems like a lifetime ago. So much has happened. There has been more than one occasion when I thought the trip was surely over. I have relived the moment of the crash a hundred times over. I do not recall how I got so close to the curb on the left of the path. I may have been looking ahead. A moment of inattention on a clear path. I may still have hurt myself if I’d landed on gravel. But I didn’t. I landed in a small patch of rocks. The only patch of rocks for as far as the eye could see in either direction. The “perfect storm” of bike crash conditions. It was almost as if the rocks had been waiting for me to happen upon them. As we have driven across the country I have given a lot of thought to what might have been. It’s useless to do so I know but sometimes it seems your brain just wants to taunt you. Yet somehow, here we are.
When I left the kibbutz I got a job on Moshav Givat Yoav on The Golan Heights.I herded sheep, weeded tomato fields, fixed irrigation systems, weeded olive groves, built barns, weeded cucumber fields, cleared fields of rocks, so that they could be planted (and then I weeded those too).And all for the princely wage of a dollar an hour. But after nine months of working from dawn to dusk six days a week I figured that I had enough money saved for a plane ticket anywherein the world that I might want to go and should even have enough left over for a few beers. So I went back to Degania to regroup. And who should have just returned aweek or so before but this unsociable American chick.On my first day back I remember standing on the porch of the volunteer building seeing her return home from work. This girl that I had first encountered for just two short weeks, over eighteen months ago. Who, for some reason, had occupied my thoughts in the interim for more time than I care to admit. Walking towards me across the grass between the date palms. Wearing the faded blue, sun bleached workers’ uniform of the kibbutzim. Covered from head to toe in dirt from working in the banana fields and of course, totally oblivious to my existence. This time, however, things were going to be different. Although we had both just returned to Degania, since we had previously spent a significant amount of time there in the past we were both instantly afforded “veteran volunteer” status. So now that we were on the same social strata, verbal communication between us was acceptable. So I said: “would you like a cup of tea?”
A week or so ago it was just me and Rae in the car driving through Louisiana as Daniel and Andi were riding. Then out of the blue Rae asked “How will I know you’re still with me?” While the question surprised me, I did have an answer. But when I tried to verbalize a response I couldn’t get the words out. The thought that one of us would not be with the other had never really occurred to me. Even if one of us is not there physically the essence of that person remains embedded within the person whose life you shared. So really, how can we ever not be together. I’ve been making movies for Rae for her birthdays for when I’m not around. Rae says I’m her memory so each mini movie is about a certain time or event in our life. How many thousands of conversations have we had? Granted, given my lack of propensity for conversation, even when I could talk, we’ve probably had less than many couples who have been together for as long as we have. But even that lack of conversation is part of our familiarity. How do you measure the essence of what it is to become so utterly familiar to someone? So well known and ever-present that the two of you become indivisible. And then to lose that physical essence. How can you not be there. Ultimately, for better or worse, that absence takes on a presence all of its own. I will always be there.
November 19th, 2015. St Augustine, FL. When I dipped my rear wheel in the Pacific it seemed a little silly really. There were all these beach goers around us and I was getting sand in my cleats and I imagined everyone looking at us and thinking, there go another bunch of idiots. I just wanted to be done with the silly ritual and get on the road. When I dipped my front wheel in the Atlantic it was one of the most emotionally overwhelming moments of my life. Rae was holding Jack in one arm and gave me my bike wheel with the other. I wanted to hold her hand. It didn’t feel right to do it alone. No matter how much time, work and planning you put into a task, no one ever gets where they are going alone.
I walked forward towards the surf and the the sounds of our friends cheering was gradually drowned out by the sounds of the waves. As the surf washed over my legs they felt like they were going to give out. Not because of the strength of the current but all my strength just left me. My legs got me this far and they were done now. All there was in the world was the water washing over me and Rae’s hand on the back of my neck. I think I was baptized as a baby. I don’t recall the event. This I will not forget.
Peace, love and Midwives
Ray and Rae (and Ian, Luci, Andi, Daniel, Ira, Lynny and Bill)
November 17, 2015. Palatka, Florida. As we near our goal I feel compelled to switch from Eastern time to Leonard time.After our first visit at Easy Street Recumbents Micah set about detailing the modifications that would be needed in order for me to be able to safely ride and operate the trike. That evening he sent us an email attachment of the itemized invoice. There were nineteen suggested options/modifications. The title of the attachment was “The Spoonermobile.” Images immediately came to mind of me riding around wearing a mask with a cape billowing behind in the breeze. When I clicked on the attachment there was a picture of the trike under the banner “Your Chosen Configuration.” When it hurts so much to move that you flinch when someone walks too close to you it’s hard to imagine what it will be like to be pain free. Three weeks ago it took two people to help me out of bed. Yesterday I rode a trike 82 miles.
You got me singing
Even tho’ it all went wrong
You got me singing
The Hallelujah song
–“You Got Me Singing”
I can still operate the gear shifters and brake levers with my right hand without too much trouble. Holding the steering steady above 30 mph can be dicey but doable if I don’t put too much power into the pedal stroke. Other things are getting harder though. Brushing my teeth, holding a mug by the handle, opening doors. My voice is already pretty much shot. And I would love to be able to finish a meal before it was stone cold. All that aside, unless something else gets me first I am going to die of respiratory failure at some point. But when you are told you may have ALS you don’t really think of any of that. It’s hard to conceptualize not being able to eat, breath or talk. There are many struggles that lie ahead but the thing that hits the hardest is the knowledge that one day soon someone other than me is going to be wiping my arse.
We find ourselves on different sides
Of a line nobody drew
Though it all may be one in the higher eye
Down here where we live it is two
– “Different Sides”
I may have mentioned (once or twice) that I’m a nurse. And as such so are many of my friends. Many of them, bless their hearts, have said they wouldn’t have a problem taking care of that particular function for me. As honored as I am at the multitude of offers the problem is that I’m a private pooper. I try to wait till everyone has left in the morning before going. I know where all the really out of the way bathrooms are in the hospital. If I’d had a stroke on the pot it would’ve been days before they found the body. Fortunately modern technology has given us some alternate options. There is a device that sits on the toilet seat that with the push of a button can take care of that “Necessity Care Function.” Granted, someone will have to push the button. Not to mention help me on and off the toilet. But hey, who wouldn’t want to pamper themselves with a gentle, warm aerated stream on “turbo” setting.
There are many mental adjustments that come with riding a trike after a lifetime of riding a two wheeler. Each time I sit on the bike I want to reflexively reach for the seat belt. Then there is the extra width that comes with having two wheels in the front. I keep leaning to the right laboring under the misapprehension that this will somehow make me narrower but alas the trike remains the same width. And trust me, I never lean to the right in any matter. I have always admired riders who can come to a halt and balance in place without falling. But hey, guess what. I can do that now. In fact, that’s one of the best things about the trike, when I come to a stop I don’t have to get off. I can have a drink, check my phone, take a nap. The possibilities are endless. I have also spent a lot of time pondering my visibility as semi truck wheels fly by just a few feet from my head. In order to increase visibility I now have my own official freak flag.
When I first considered buying a trike, first and foremost was the worry that no one would talk to me when I got home. I mean, three wheels! The last time I rode something with three wheels was probably 50 years ago. But my future is going to be a clinic in adjusting to regression. Soon I’ll need a sippy cup to drink from, a drape to keep me clean while eating. And did I mention that I won’t be able to wipe my arse? That being said, after the first day I felt like I’d been riding a recumbent forever. It didn’t take long to adjust. If I can get used to something so different from my ingrained frame of reference in this short a time I think I can adjust to anything. Maybe even sharing the bathroom. In a totally unrelated bonus, Rae and her business partner own a chocolate retail store called “The Bent Bean.” She loves tooling around on the Spoonermobile after I’m done for the day. Recumbent riders are collectively known as “Bent Riders.” To be honest, that alone was reason enough to get the trike.
And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb
On the 19th, if all goes according to plan we will be at the Atlantic coast. We shipped my bike home to make room in the car but kept the front wheel with us. I dipped the back wheel in the Pacific and I’ll dip the front in the Atlantic. It’s not exactly how I imagined the event would transpire but does anything in life ever work out like you imagine? You adjust and move forward. Or sometimes backward or to the side. But hopefully over time, there is forward motion. Even if that involves getting used to going backward.
I’m tired of choosing desire
I been saved by a blessed fatigue
The gates of commitment unwired
And nobody trying to leave
So I guess you’re wondering when I’m going to get to the meaning of life. As you can imagine, to even think about taking this journey I would have to spend a fair amount of time in the saddle. And you’d be right. Back home I generally don’t ride with anyone. I just commune with the corn. Riding is my moving meditation. But I do believe that over the course of my decades in the saddle I have come to understand the meaning of life. And I was wondering if, by way of thank you for all the support and encouragement, would you mind if I shared it with you all today?
Now, I should emphasize, this is not information that should be sought lightly. While it may be divine in its simplicity, it can be transformative if you accept it as your credo. If you’re in a relationship and both of you like to ride and one of you takes this information to his or her heart and the other does not, it has the potential to lead to great disharmony. So I’m going to give you one last chance to stop reading.
November 16, Gainsville Florida. Feeling stronger each day. Kind of makes me want to go back and ride the part I missed. Oh, how soon we forget. I’m guessing Rae would probably have something to say about that too. Should probably quit while I’m ahead. And still married. And still alive.
We’re almost there. We plan to arrive in St Augustine on the 19th. Don’t forget to keep logging your miles at Ride for Ray. The miles you have logged so far have made it around the world and then some. 32,6oo miles. There are a lot of crazy cyclists out there (as if I didn’t already know that). If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to firstname.lastname@example.org with a message about yourself and who you are and where you are from.
November 13, 2015. Madison, FL. It’s been three weeks since Rays Little Fall. A broken arm , three broken ribs, three broken vertebrae, a partially collapsed lung, a concussion and two blood clots later, here I go again. For three weeks you’ve been picking up the slack for me. Last time I looked we were a hair shy of having enough miles to circumnavigate the globe. That’s over 24,000 miles. Holy shit that’s a lot of miles. Finally today I got my name on the board.
Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to email@example.com with a message about yourself and who you are and where you are from.
November 10, 2015. Defuniak Springs, FL. Wait, it gets better. Before “Rays Little Fall” I had visited an emergency department once in my life. It was to get stitches. And before you ask, yes it was a biking accident. Yesterday I visited my third emergency department in three weeks and three states. The number of bullet holes in the Alabama state line sign would seem to suggest the best course of action would be to duck and keep pedaling. However, paying an impromptu visit to the Emergency Department here was probably the smartest thing I’ve let Rae make me do.
The power of the human mind for denial will never cease to amaze me. People are often incredulous at tales of women showing up in labor who didn’t even know they were pregnant. That doesn’t surprise me at all. If you don’t want something to be badly enough then you find a way to make it not so. I have spent the last year or so watching my left upper torso getting progressively smaller and my skeleton becoming more prominent as the muscle mass covering it diminishes. So imagine my surprise when my left arm and hand started to get bigger again. And bigger. We tried many things, elevating it, anti inflammatory meds, sling adjustments, sleeping with a pyramid of pillows stacked on top of me to keep my arm up. But every day my arm and hand became more swollen. Rae described my hand as looking like a glove that someone had filled to capacity with water. My skin even took on a reflective sheen. The possibility of a clot had been suggested by a friend who is a physician. But I just couldn’t deal with one more fucking problem and I’m a nurse so dependent edema it was going to be, damn it. Although I was starting to wonder where my knuckles had gone and why my fingers wouldn’t bend anymore. I hate taking off my wedding ring. But fortunately I switched it to my right hand in El Paso because at this point, if it was still on my left hand, either the ring or the finger would need cutting off.
I came to the United States on a fiancé visa. Rae and I had 90 days to get married or I would have to leave the country. Both of our parents were separating at the time after long marriages and we weren’t too sure about the point of this whole marriage thing. Ours was a marriage of convenience, so that I could get a green card. It wasn’t exactly billed as the most romantic event of the century and we even told people not to bring any gifts. Would the truth be known we had even set a date for the divorce one year later in 1984.
Did I mention that in one of my many previous lifetimes I was a jeweler? Before coming to the States I spent a month back in England. I wanted to make our wedding bands but didn’t want to spend too much money because a) I didn’t have any and b) as I said, this wasn’t exactly billed as the most romantic event of the century. So while in England I asked my divorced or separated family members if I could have their old wedding and engagement bands. I took them to one of the jewelry shops I used to work at and they let me melt them down into a bar. I rolled the bar out into one long band which I then turned into two gold rings. And voilá, two free wedding rings. As cheap as my intentions may have been, over time I have come to see the wedding ring as an external sign of an internal spiritual grace, a visible representation of an invisible bond that holds two people together–even when distance separates them. I always know that Rae is at the other end of the band on my finger.
We had just dropped off Daniel, Andi and Bill in Fairhope on the Eastern Mobile Bay coast and were headed for Pensacola. When on a whim Rae turned into the Fairhope hospital parking lot and said “lets see if they’ll see us.” I’m guessing she knew better than to ask if I wanted to go. After a few hours they finally took us back to an exam room. When the practitioner came in, before so much as laying a finger on me she just looked at my hand and said we need to get a sono to check blood flow to rule out a clot. To which I proceeded to tell her why it couldn’t be a clot because of x, y and z. And by the way, did I mention that I’m a nurse?
The sono tech spent about 30 seconds on my neck and forearm respectively and about 15 minutes on my upper arm. Rae asked if she could see any clots. To which the tech curtly replied “we’re not allowed to say anything.” Which is tech speak for “you’re fucked.” Technically speaking I was right. There wasn’t “a” clot. There were two. So now I can add DVT’s to my ever growing list of health issues. I’ll be on an anticoagulant for the next 6 months. But more importantly I’ll be on a trike in 48 hours. I just have to try not to do anything that might cause me to bleed for a while. My trike shipped from Easy Street Recumbents in Austin today. We rendezvous with it on the 12th in Tallahassee. My trike is the one in the box, not the rickshaw thingy in the picture. I think.
With each ED visit I also get a new arm brace. Actually, this is #4 including the one I got from the clinic in El Paso. This one covers my fingers. So if anyone asks how I am, I can say “I can’t see my fingers, so as far as I can tell everything’s fine.” From Tallahassee we will have 8 days left of riding to get to St Augustine. I’ve been looking at the roads as we’ve driven along. Some are narrow. Some have no shoulders. Some are quite busy although we seem to be past most of the logging trucks that filled the roads in Louisiana. I have thus far not been to an Emergency Department in Florida. Depending on when you are reading this you’ll know whether or not I made it to the Atlantic. I hate it when people know more about my future than I do.
A certain amount of denial is required for me to get back on a moving vehicle without seatbelts or airbags. I am supposed to keep my arm elevated to help reduce the swelling. I could put a pile of pillows on my lap on the trike to keep my arm up. That’s the good thing about a recumbent, I wouldn’t need too many pillows to raise my arm above the level of my heart. I might even strap a few pillows to my head too. There’s nothing that cries out “street cred” like riding a recumbent trike surrounded by pillows. This trike, like my Schwinn, is fully operational by the right hand. The hand that now bears my wedding ring.
Sometimes people ask me what is the secret to a long standing relationship. If I knew the answer to that I’d write a book. Relationships are such a crap shoot. Our eldest daughter is an incurable romantic. She once asked: “Dad, how long did you and mommy date for?” I thought for a while and responded “Oh, about 30 minutes.” “Euwww. Dad!” I’m guessing that wasn’t the response she was hoping for. I was going to add “it would have been less if I could have walked in a straight line” but thought better of it. We’re a one night stand that has lasted nearly 34 years. I don’t really recall if we actually decided not to bother getting divorced or just decided that marriage wasn’t so bad after all. Maybe we just stopped denying we loved one another.
The only advice I have to offer is learn to say sorry–and mean it. Beyond that I would just say treat yourself and each other with respect. When frustration and difficulty assail your relationship, as they will at one time or another, focus on what is right between you, not only on the part that seems wrong. Remind yourselves often of what brought you together (even if it was a brand of beer).
There are many things I could say about this video. Each video I make tends to take on its own personality based on the content submitted. Granted I edit the clips and put them together so I provide some of the narrative flow. However, the video clip contributions from family members and people I helped bring into the world helped make this video one of my favorites. Thanks again.
Last time I looked we were close to 20,000 miles. Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to firstname.lastname@example.org with a message about yourself and who you are and where you are from.
November 7th, Bugalusa, LA. We are back east of the Mississippi. We picked up Bill, a neighbour, from Urbana who rode down on the City Of New Orleans to join us and ride. One of the original ideas behind the ride was to create lasting memories for those who rode with us and joined us along the way. But through the videos, so many people who would not have otherwise been able to, have been part of the ride and done a part to keep us rolling. I hope through the videos they will create a lasting connection to the ride.
Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to email@example.com with a message about yourself and who you are and where you are from.
November 6th, Bunkie, LA. A lot of people have been inspired by what we are doing. But who I am exists within each and every one of us. I would not be here were it not for a small army of people. Everyone here, from start to finish, has played a part in this journey. The drivers, the riders (the hospital staff) the road angels who have put us up along the way. Who have cheered us on. Made us meals. Bought us meals. Worked on bikes on their days off. Networked to get us what we need. Rode miles when I could not (13,306 miles at last count). Donated money and supplies. The number of people probably runs into the thousands at this point. This has become so much bigger than any one person involved.
Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to firstname.lastname@example.org with a message about yourself and who you are and where you are from.
November 4, 2015. Coldspring, TX. We are finally leaving Austin. The town and people were good to us. This morning we finalized a plan with Easy Street Recumbents and a trike is being built for me. There is a critical part for the one handed operation of the brakes that needs to be shipped from England (where the trikes are manufactured). This part will get to Austin on Monday then the trike will be sent to wherever we are. There is a learning curve to riding a recumbent but I’ll have time. I hear it is still possible to overturn and crash a recumbent trike but at least I’ll be a lot closer to the ground. Douglas Adams once observed “the knack of flying lies in learning to throw yourself at the ground and miss.” I have mastered the first part but the second part I’m having difficulties with.
As I’ve said, I have kept a journal for as long as I can remember. Some of them have been lost over the course of various moves around the world, but at this point, I have an unbroken record going back to the mid-’80s. It started out just documenting our travels. But eventually journaling became part of my post 24-hour-call coffee ritual. I never went to sleep after being on call. It always seemed like such a waste of a day. Instead I would leave the hospital and go to the coffee shop, sit down with a cappuccino and my journal, put Leonard on the iPod and gather my thoughts. One day out of the blue, Lisa asked me if she could have my journals when I was dead. I thought about this request for a while because if they ever made a movie of my journals it would not be PG-13. I asked her why she wanted them. She said, “so I can know you better.” Then I thought, well, I’ll be dead anyway so I said, “sure” and didn’t give it much more thought.
I don’t do “still” very well. Even when I’m stationary I’m pacing. I can make people very nervous. The thought of waiting a week for my new trike seems like an eternity to me. I have never been this sedentary for this long a period of time. Ever. However, that I will be able to finish the ride at all is a blessing. Well, let me rephrase that. That I will be able to ride at all is a blessing. The finishing part I shall believe when and if it happens. Rae is excited about accessorizing the trike. Since the trike rides low, I need a flag to make myself visible. My “Rays Little Ride” jersey was cut off me in the ambulance. Quickly and skillfully by a paramedic before I could protest. But we still have its tatters. This will now become our freak flag and you better believe we’re gonna let it fly.
In 2013 while in Amsterdam, I visited the Anne Frank house. The home of probably one of the most celebrated journals of all time. At the end of the tour, there were video screens showing interviews with the surviving members of the Frank family. I sat and watched one of her father, Otto Frank. He said that he and his daughter had lived in very close quarters for many years and he thought he knew her well. But when he was given the journals to read after the war, he was shocked at the depth and insight that his daughter had into life. This led him to conclude that no parent truly knows their children. This got me thinking about the reasoning behind Lisa’s request for my diaries. Not really knowing those you are closest to is something that goes both ways. So for Hanukkah that year I gave Lisa one of my journals. I thought I’d start at the beginning and gave her the one recounting her birth. I said that when you’re done with that one, return it and I’ll give you another and we can treat it like a library. I told her that she shouldn’t have to wait till I’m dead to know me. But of course, this wasn’t the one she wanted. She wanted the ones written during her teen years. Those were some tumultuous times. I hoped I hadn’t written anything too incriminating but handed over the relevant tomes as per her request.
There are many faces we wear. Amongst them there’s the person we are at work. There’s the person we are with our family. And there’s the person we are when we are completely alone. If anyone knows who I am alone better than even me it’s Rae. Sometimes I wonder why I bother talking because even if I say what I think I should say, Rae will ignore what I said and do what she knows I really want to but didn’t say. As annoying as that can be at times, isn’t that the point of it all? To find that someone who knows you better than you yourself. There are billions of people on this planet laboring in seeming anonymity. Yet if you find that one person to notice you. To witness your life. To validate your existence. Isn’t that the point of it all? When two become so much greater than the sum of the parts. I don’t wish to diminish the value of someone who has not found their “one” but for me this is the meaning of life. I could not have gotten this new trike without Rae. I can talk to people who are used to my voice on the phone, if I use a headset, and they can understand most of what I say. When I speak on the phone with someone that I don’t know, there is generally a pause . . . then they politely bemoan the quality of the connection “I think the signal is breaking up.” Sadly, yes the signal is breaking up but it’s the signal coming from the motor cortex of my brain, not the cellular network. Rae has called recumbent dealers in England multiple times, recumbent dealers in Texas, California and Wisconsin because she knows it’s the only thing that I want to do. If I were Rae I would be freaking the fuck out at the prospect of me getting back on a bike. But, even before I dared voice it myself Rae was thinking about it. When I get back on a bike again it will be as much because of her love as it will be because of my pigheadedness.
One day I received a text from Lisa. She had been reading my journal and wanted more information about something. She had taken a picture of the page in question in my journal and sent it to me. It was about the night of her junior prom in 2006. I had taken her to the event but she didn’t want me to drop her off too close in case anyone saw that her dad was bringing her. As I drove away she was holding up her dress and walking awkwardly across the parking lot in high heels to meet her date. I must have gone somewhere to have coffee and write in my journal because I wrote, “I bet when I come to pick her up, she’ll be sitting outside alone.” But this was many years ago, and I hadn’t given it anymore thought until Lisa texted that day.
“How did you know I would be alone outside?”
“Because that’s where I would have been,” I responded.
November 2nd, Austin, TX. Had a dream last night. Don’t remember too much about it but I was riding and I got a flat. I can change a tire one handed but in the dream I used both hands. All my fingers worked. I didn’t even need a tire lever, just used my hands to get the tire off. I recall feeling pleased with myself at how easy it was. But then I woke up and the glow of the small victory of my dreams dissipated in the reality of the effort required to simply roll over in bed.
Hope can be a very tenuous thing.
On the day of the accident, as I was lifted into the ambulance I was still a little disoriented. But as the doors closed I lay back on the stretcher and believed that I would never ride a bike again. All I could think of was that I had let everyone down. That was 11 days ago. I rode a bike today for the first time since the accident on October 22nd. We don’t own it yet but we’re hatching plans. It’s not quite what I imagined I would ride but I think if nothing else I’ve resolved the potential issue of flying over the handlebars.
I have never been to St Augustine, Florida, and have no idea what it looks like. Yet, the images I have had in my head of arriving there have taken on so many different iterations over the last 10 months. Walking, riding, wheelchair, not at all. At this point I know better than to think that I might actually make it. But I’m going to give it everything I have left. There is an army of people out there riding for me. Even Rae finally got in on the act today. The whole community, cycling and non cycling alike has come together for this cause. If they can do it, I can. It’s time to kick some ALS.
Don’t forget to keep logging your miles at Ride for Ray. If you are already on Strava, just join the group and your miles will be automatically added. We look forward to including you in our next video. Send pictures or video to email@example.com with a message about yourself and who you are and where you are from.
October 31st. Austin, TX. I did not grow up roaming the streets of London at night, vandalizing public transportation and dreaming of escaping to America to becoming a midwife. I know that may be hard for some of you to believe. What I wanted to be was an astronaut. I wanted to be the youngest person in space. There were no books at the local library about space and space exploration that I had not read. I was devastated when the show “Lost In Space” came on and I saw that Will Robinson had beaten me to it.
My dream did not end there but it took a dent. My dad made light of my ambition telling everyone I was going to be the first dustman (garbage collector) on the moon but I remained undaunted. I should mention that to his credit, some 40 years later, he did apologize.
For as long as I can remember, my reach has exceeded my grasp.
We’re still on the road winding our way east. And by winding I mean winding. Once we get to Austin we’re going to take a break. They have an MDA Clinic and I have some body parts that need to be looked at. Not to mention there is some serious trick or treating to be done.
The initial notion behind “Ride for Ray” was to make up the 2,500 miles or so that I could no longer do and we would move on down the road as others rode the miles. But we have already exceeded that goal. Someone suggested “ride around the world” (24,859 miles). Recently a friend from the Minneapolis biking community posted a video about accumulating enough miles to fly me to the moon. That’s 238,900 miles. It got me thinking about a lot of things. It may be too late to become a dustman but not to fly to the moon.
Don’t forget to log your miles at Ride for Ray. We look forward to including you in our next video. Send pictures or video to firstname.lastname@example.org with a message about yourself and who you are and where you are from.
October 29th, Del Rio, TX. I look forward to getting to our destination each day to check the email and the eclectic collections of videos and photos that are being sent. Daniel and Andi are still riding here. Lynny and Ira are riding through Florida before they have to head back home for a wedding. They are not going all the way to St Augustine. They will drive back down for that so that everyone can finish together mid November.
“The birds they sang at the break of day
Start again I heard them say
Don’t dwell on what has passed away
Or what is yet to be.”
Spent the day driving through rural south west Texas. There is quirk, and then some, in them there hills. Every little town has its own personality. Looking forward to what the road has in store for us today.
Hope you have as much fun watching the video as I did making it.
Don’t forget to log your miles at Ride for Ray. We look forward to including you in our next video. Send pictures or video to email@example.com with a message about yourself and who you are and where you are from.
October 28th, 2015. Fort Davis, TX. We drove over the Emery Pass today. 8,000 feet. There were no guard rails. There were shear drops on every turn. Narrow roads. 360 degree switchbacks. The sort of thing that makes a pile of rocks sound appealing by comparison.
Have I mentioned that I’m an ordained minister in the Church Of The Latter Day Dude? I have abided over the nuptials of several couples. Amongst them, our daughter and son-in-law Corey. When Lisa told me they are planning on getting married I asked when the blessed event was going to take place. Corey was in the Marines and Lisa said, we think Corey can get leave in 10 days. 10 days? So we had 10 days to organize a wedding that we wouldn’t be sure would be taking place until a few days beforehand.
At the time Lisa was the manager of a coffeeshop. One of her customers owned a funeral home in a huge Victorian mansion that he offered for the ceremony. There was a small chapel with chairs on each side that he used for the viewings that could be used for the wedding. We put a semi circle of small pillars with flowers on top in the front of the chapel because the chapel was fronted by an insert that was awfully, well, coffin shaped. There was a big sign outside the building that read “Funeral Home.” A sign was made about the wedding and stuck up to cover the “eral” part of “Funeral Home” sign. So that if you didn’t know the actual purpose of the building the sign just read “Fun Home.”
One of my work colleagues (the one saving me a seat next to Marie Osmond in the hereafter) is a cake maker extraordinaire and she made the cake. Our youngest daughter Sophia was in band in high school and four of her friends formed a string quartet just to play for the service. To the best of my knowledge this was their only gig. Our good friend Jon owns a photography studio and donated his time to shoot all the pictures. And as I mentioned I conducted the service. I asked Lisa if there was anything specific she wanted me to include in the service. Her only instructions: “Dad, just don’t drop the f-bomb and please get our names right.” Such confidence.
We had the reception back at our house. Anyone who asked to help we gave an aluminium baking tray with a bunch of ingredients and cooking instructions to bake something for the reception. Lisa bought her own wedding dress and Corey wore his Marine dress blues. I think the wedding cost us about $600.
Before I would marry a couple we would all meet to make sure of mutual compatibility. For my part I would ask them one question. Do you love this person for who they are and not for who you think they can become? I don’t ask for an answer then and there, it’s just something I want the couple to think about. And I guess I’m asking this question more of the women than the men. The problem is that men don’t change. We think we do. We think we make all these concessions but we don’t. We might rearrange our priorities but with the idea of getting the same end result, not actually changing things. We are not stubborn. We are not pigheaded. We are just who we are. We are the men you fell in love with. I’m not saying men are totally incapable of change but waiting for it to happen is akin to watching a glacier melt (global warming not withstanding). You get involved in a relationship for who the person is. Not what you one day think they will become. To do otherwise is to court disappointment. I can’t change who I am. Even after the fall I’m trying to figure out how to get back on a bike to complete this ride. I have no business doing so for more reasons than I care to count. But that part of my brain has no off switch. I can’t help it. No matter how much it hurts to move I can’t stop planning. I will continue to mend for now, while everyone out there rides the miles I can not. I am humbled by the over whelming enthusiasm from friends, family and strangers from all over the world. But I have to finish what we started. Even if it’s just the last part in Florida. Maybe I need a three wheeler that is low to the ground. Maybe I need a bike like the Pathfinder Mars Lander that is surrounded by airbags so I can slam into any surface at high velocity and just bounce. Maybe I need a lobotomy.
I dropped my cell phone today. Sadly there’s nothing unusual about that. But I mention it because I was able to pick it up again. All by myself. I haven’t been able to pick anything up from the floor since the accident. Rae is cheering me on when I breathe into the incentive spirometer with the same enthusiasm that she had previously reserved for cheering us as we rode by on our bikes. Yes, I’m a very lucky man. I know.
If my recovery continues at this rate I hope to be up and falling back over again in no time at all.
October 26th, Silverton, NM. Someone asked me this morning how I was feeling. I’m happy to report that my right arm does not hurt. Rae, Andi, Daniel and I left Scottsdale after four nights and are back on the road. Feels good to be moving again, even if my bike is in the van next to me instead of underneath me. We are sticking to the original planned bike route and Daniel and Andi are still riding. There are a lot of cacti out there. There is a lot of everything out there. Except humans.
Another perspective on events of October 22, 2015 from a guest author.
I had never realized before how intimate you become with someone when you ride thousands of miles on bicycles with them. Sure, when you go out on the local group ride or circuit race, you shop around the group to try and find a nice steady wheel to follow and keep near the front and hope Old Man Trouble doesn’t come to find you. You pay vague attention to the rider, maybe what team he’s on and how big or small he is and that’s about it. If that little romance doesn’t pan out you just go looking around the group for another steady wheel to follow. When you are riding with one other person in a two man pace line for mile after mile after mile, hopefully across an entire country, something else happens.
You get used to your partner’s pedaling cadence and the subtle signs that they are getting tired. You stare at their calf muscles for hour upon hour and can almost see the fatigue setting in, just as you can see their shoulders start to rock from side to side and their stolen glances down at their pedals become more frequent. When the person you are riding with also has ALS, you get to know every asymmetry of their body. The way their left shoulder drops down and the bunched muscles of their right shoulder pull up on the opposite side to compensate and support 90% of their weight and provide all of the control over their bike. You see the slight difference in pressure on the pedals between left and right leg and a host of other signs and symptoms that you never noticed before. When the ALS has progressed to the point that their left arm has become all but useless, you can also see the difficulty they have with maintaining their grip on the handlebars over even the slightest of bumps and the tenseness in their body as they try to deal with heavy stop-and-go traffic. They are also unable to give the flick of the elbow that is the universal sign for the man behind to pull through and take a turn doing some work at the front. Most of us that ride a bike in a group take this simple gesture for granted, but perhaps we shouldn’t, because with one roll of the dice it could so easily be us struggling to overcome all these obstacles. After a couple of days, we settled on a slight pause in his pedaling stroke to indicate it was time for me to do some work. We never talked about it, that just became the default signal for me to stop being lazy and help out at the sharp end.
That’s what I mean when I talk about intimate. Ray Spooner and I are very different people with very different backgrounds that were brought together by our love of cycling, but once you put us on bikes together, I can pretty much tell you what he is thinking at any given time and I am sure he would tell you the same. I know when he’s pissed off, hungry, exhausted, content or enjoying pulling a massive turn at the front at 25mph just like he was 21 again and everything in between. The problem is, this shared connection makes it all the more difficult to cope when Old Man Trouble does come to find you. When I heard Ray shout something along the lines of “whoa, whoa” on the bike path in Phoenix, AZ, in my heart I already knew he was going down. That had happened a couple of times on the trip already without too much damage to man or machine, although every time I worried that he was going to hurt himself. This time my head snapped around and I knew right away it was going to be a hard fall. Both Ray’s wheels were up against a 6 inch curb and there was a large pile of jagged rocks quickly approaching. There was very little even an able bodied rider would have been able to do to save that situation and Ray’s left arm was just a dead weight pulling him into the curb. I watched him get airborne, go partially over the bars, flip sideways and land heavily into the rocks. There was no roll, no sliding, just instant deceleration to zero. By the time Ray landed, I had already unclipped and laid my bike down. Rays left arm was bent under him at an impossible angle and given the fact that Ray rarely even winces let alone comments on pain, I knew the from the moans that we were looking at a trip to the hospital.
I went to visit Ray in Urbana about a month ago and posted a picture on Facebook of the two of us. I had titled it “Mates” but someone else had added a comment saying “Wheelmen” and I think that captures it perfectly. It is almost impossibly hard to watch your wheelman take such a savage fall and know that there is nothing you can do about it, just like it is impossibly hard to know there is nothing you can do about the ALS ravaging his body. Our little cycling fellowship has been broken for now, but I don’t think I know of a more tenacious man than Ray Spooner, so I have a funny feeling you might not have heard the very last ride from these wheelmen just yet.
October 24th, Scottsdale, AZ. It took me fifteen minutes to get out of bed this morning. Ian and Rae offered to help me get up but I was determined that I could do this on my own. When I’m on my back I feel as helpless as a turtle that had been flipped over trying to right itself. Eventually they ignored my protests, put their arms around me and said “this is going to hurt” and just hauled me up. I think more because they were done listening to my grunting and groaning rather than any altruistic desire to help.
Ian, Luci, Lynny and Ira had various time constraints and we knew from the start that they were not going to be able to complete the whole ride. So while I mend here in AZ, Lynny and Ira leave today to head on down the route with the goal of completing the last part in Florida before they will have to head home. Ian’s wife Kate is driving out from LA with their daughter Violet to pick Ian up. And Luci will be flying home to Minnesota. Which will leave Rae, Daniel, Andi and me to continue on towards El Paso, hopefully, Monday. Daniel and Andi will still be riding. So, for now at least, this is the last time we shall all be together.
So, do you want to hear my plan? Currently, between what we have ridden so far and what Lynny, Ira, Daniel and Andi will ride, there are miles that would not get ridden. So, I’m asking you to help make up that deficit. I would like people to ride and donate those miles. There is a site we’ve set up that you can log into and “Ride for Ray.” Just click on the link below to log your miles. 5 miles, 10 miles, 100 miles. Anything you are able to do will help the cause.
Oh, and one other thing. I would like you to submit a picture or a short video of you riding. Just a short ten second video and send it to me at the following email address: firstname.lastname@example.org. If possible can you tell me who you are and where you are from in the email. You can also post a picture of yourself out on a ride and then put it on Instagram with the hashtag #RideforRay. Then every day on the blog as we go on I will include a video montage of as many of the videos as possible of the people out there “Riding for Ray.” It will have a totally epic soundtrack. I really look forward to hearing from you.
I am contemplating things that someone who took 15 minutes to get out of bed has no business contemplating. Various thoughts have entered my mind about being able to ride the last leg of the route myself. I don’t want to just get on a bike at the Atlantic to ceremoniously dip my wheel. Obviously my physical condition will dictate what I’m capable of. But ideally I need to work for it. Maybe ride the last few hundred miles or so. I would need something on three wheels to do this. The problem with living in my head is that my brain is in constant motion. Even when my body can barely move. I do not do stationary very well. This does not bode well for my future, I know. I’ve been in pain before but it’s been the sort of pain that I’ve been able to ignore. This pain is different. It makes itself known with every step and every breath. The one good thing about all the pain though is that it is the only thing that has so far succeeded in occasionally making me forget that I have ALS. Despite this I’m hoping that it will be back to the level I can ignore by the time we get to Florida in a few weeks.
Now that I’m not riding, Rae has changed her focus. She isn’t shoving food in my face every second. However, one of the things that we were given in the hospital was an incentive spirometer. I have to inhale and exhale into it to maximally expand my lungs and prevent the left lung from collapsing further, and also hopefully prevent me from getting pneumonia. So now, instead of food, every time that I turn around Rae is sticking a tube into my mouth and saying “Here, blow this.”
A long time ago in the initial planning stages I sent Ian a text. “Ray and Ian go for a bike ride. What could possibly go wrong?” While this didn’t go off as planned, it added another chapter to our storied past. Thank you Ian for more than I can express in words.
October 23rd, 2015, Scottsdale, AZ. I know that I’m a very lucky man. I woke this morning at 6:15 am. Rae and Ian were at the bedside with a Starbucks cappuccino for me. Most people with this kind of fall would have broken other bones and at least their collar bone. This is generally caused by putting their arm out to brace the fall. This hasn’t been an option for me for some time. As Ian pointed out, the way I fell was dictated strictly by the laws of physics. I fell on my arm. I broke my arm. I could have broken a lot more. I could have broken my leg. I could have broken my back, oh wait, I did break my back. But I walked out of the hospital today less than 24 hours after the accident with Lynny, Ira , Ian and Rae by my side. The nurse that admitted me yesterday was the same nurse who discharged me today. She said that she had to escort me to the elevator but she knew better than to offer me a wheelchair.
I spoke with my mum and sister in England. The phone is not the best form of communication for me but they seemed to understand most of what I said. I’m a lifelong mumbler so I know when people are just nodding and smiling to be polite. These day it seems half the time I can’t even understand what I’m saying myself. But this morning my voice was a little clearer to me. Wouldn’t it be great if a blow to the head was all it took to hit the reset? As long as you survived, that is. The place we’re staying has a hot tub. I think my body had forgotten what it felt like for me to be kind to it.
I know that I’m a lucky man. Lynny and Ira’s friends, Linda and Fred in Scottsdale became our next road angels and provided a place for me to recuperate. And we are now all sitting by the pool, eating sandwiches that were delivered from a local bakery and paid for by the nursing and midwifery staff of Labor and Delivery at Carle Hospital where I used to work.
We are all a long way from home. And a long way from our goal. I will never ride my road bike again (for more than 6 miles on a Wednesday). We are probably going to ship it home so that we have more room in the car. I thank everyone for their offers of tandems and recumbents, but right now sitting and lying down is painful. Friends and strangers alike are asking if they can help. And do I have a plan. Lying in bed in the hospital I was making a plan. Although it has been modified a little since the morphine wore off. But there may be a way at least in spirit that this ride can be completed. Everyone else on the team can still ride. And everyone reading this, no matter where you are, can be part of completing the journey by riding and donating miles. Stay tuned. At present we plan to leave on Monday and still follow the route to St Augustine.
October 23, 2015. Phoenix AZ. John C Lincoln Medical Center. Room 540. Through all the training and preparation I have done for this ride I never actually believed I would complete it. I always thought some how, some way there were just too many miles for me not to hurt myself. Prior to this year I can’t remember the last time I fell. But not trying to do the ride was unacceptable. Yesterday morning we were cruising along at 25 mph and I felt great and for the first time ever the thought that I might actually be able to pull this off popped into my mind. We were riding through Phoenix and made it through all the traffic and were on a bike path next to the canal. No traffic, minimal pedestrians, no obstacles to speak of. For the whole ride I have been focused on the road in front of me, looking for obstacles and only occasionally stealing a glance at the scenery around me (and Ian’s butt in front of me).
I think on the bike path I allowed my mind to wander. I got too close to a curb while looking around and just went over it. On the other side of the curb there was gravel as far as the eye could see in both directions. Except for one 10 foot section of large rocks. It happened very quickly, but as I went flying over the bike the irony of where I was about to fall still had time to register. I don’t recall going over the handlebars, but Ian says that I did. I lay there on a bed of rocks yelling in pain, trying to get myself to shut up, but this just had to run its course. Once I gathered my faculties Ian helped me to the curb to sit down. He asked me if he should call Rae or an ambulance then asked a couple of other questions that I should have known the answers to but didn’t. Then he decided himself to call an ambulance. I have never broken a bone before, but there is no mistaking the feeling of cracked bone rubbing on cracked bone. The paramedic who braced my arm said “ooooh, yup, that’s broken.”
In a previous lifetime I would still have been trying to figure out ways of continuing the ride but as they hoisted me into the back of the ambulance and closed the doors I knew it was over for me. There were so many places I could have fallen over the last 5 days in the middle of nowhere. But I ended up falling less than one mile from a trauma center. I have never ridden in an ambulance before either. It was a decidedly short ride though. No flying down the highway through stop signs with lights and sirens going. I felt cheated. It seemed that no sooner had they closed the doors then they were opening them again and wheeling me into the ER where the first thing they did was cut off my Rays Little Ride jersey. Several X-rays, MRI’s, EKG’s and CAT scans later I am told I have three fractured vertebrae, three fractured ribs, a pneumothorax, a fractured humerus and a concussion. On the X-ray they also pointed out to me my collection of old fractured ribs from previous falls. Apparently my rib cage is a living history of my cycling mishaps.
I have never spent the night in the hospital either, at least not when I wasn’t being paid to be there so it was a day of many firsts. The question is, now what? It is now the morning after and on the wall at the end of the bed there is a checklist on the whiteboard of people that have to come and see me to give me the all clear. The only blank box left is a cognitive evaluation. Once they arrive and sign off, we will be on our way. What exactly that means for the future of the ride? This we will be talking about with the team when we get out of here. They are waiting back at the hotel room with fresh bagels, cream cheese and lox.
October 21, 1990. Urbana, IL. We did not find out the gender of any of our kids ahead of time. When Rae was expecting with our second we had some girls’ names that we really liked, but if it was going to be a boy Rae, wanted to name him Emanuel after her grandfather. I wasn’t crazy about the name at the time. Towards the end of the pregnancy we knew that the baby was breech and we were told to go to the hospital as soon as possible if anything like contractions started. That Sunday we had just had a huge supper of challah and minestrone soup. When Rae called at me from upstairs and said that there was a lot of bloody show and mucous in the toilet. So we left immediately for the hospital. When the nurse checked for dilation she said “Congratulations you’re six centimeters…….. and your baby has 5 toes.” At that point what seemed like 20 people descended on the room, starting IV, shaving, verifying history, giving Rae medication to prevent aspiration and then they rushed us to the OR. I was initially allowed in the OR, but as soon as the doctor arrived they put her to sleep and told me that I had to leave. I wanted to stay and hold Rae’s hand through the procedure. “It’s okay, I’m a nursing student” was the first thing I could think of. Which to me meant a lot, but to the people in the OR it meant less than zero and they shuttled me out of the door. I watched the birth of our son through a small, square window in a wooden door. After the c-section they were wheeling Rae to the recovery room and they brought the baby to show her. She was obviously in a lot of pain but wanted to hold the baby. It’s a boy they announced as they handed her the baby. She looked at me, and said “His name is Emanuel, do you have a problem with that?”
October 21, 2015. Wickenberg, AZ. The rotating support crew got up early and made us a huge breakfast of oatmeal, sandwiches, and hot tea. Then the assembled masses sang “Happy Birthday” over the phone, two time zones away, to our son–who now goes by Manu. We had just gotten up, but he was already at work and had taught his first class of the day at the high school in Chicago where he works. You know, one day there you are losing your mucous plug and in what seems like the blink of an eye they’re teaching on the Westside of Chicago. Sigh. Where does the time go.
I guess you know the honeymoon is over when you fall and all people do is complain that you’re getting blood on everything. When I used to work on Labor and Delivery we had a sign up that would indicate the number of days without a person falling on the unit. If I still worked there it would perpetually read zero. Today was easier than yesterday. I don’t think I’ve ever spent so much time riding in a straight line. Ever. When I looked ahead at the road it seemed that the telegraph poles would get shorter as they stretched off into the distance. Giving the illusion that up ahead just over the horizon was downhill. Despite the fact the poles kept getting shorter the promised downhill did not appear. I think what I was seeing was a result of the curvature in the surface of the planet.
The last week before I left for the trip was total chaos. Every day was full of things that needed to be done. But our youngest daughter Sophia called and wanted me to visit her at college before I left. She lives three hours away and I did not really have a day to spare to do this. But when your kids want to spend time with you, you make the time. We only had a few hours between classes and when she had to work, so she had made an itinerary to make the best use of the time. She showed me her new apartment, explaining every item on every shelf in great detail. We had coffee. Then ordered pizza. The pizza we took to a local park to eat for a picnic. Eventually it was getting close to work time and Sophia said we had to leave. I know I had reservations about finding the time to visit but that moment, there on the picnic blanket watching the autumn leaves blow. That moment I wanted to last forever.
Do you know who went to their grave thinking: “You know what? I spent too much time with my kids.” Fucking no one, that’s who.
October 20th, 2015. Quartzsite, AZ. 112 miles and 5,992 calories later. It’s not that late but everyone has gone to bed. Except for me and Luci who is typing my blog for me. I kinda want to go to bed too but I’m drinking my fourth protein shake of the day. I may make fun of Rae for the seriousness with which she takes her task, but at this point, she’s probably the only thing keeping me on the bike. It was 51 degrees yesterday when we left Descanso. It was 81 degrees today when we left Brawley. It didn’t get any cooler. We spent a good portion of today riding through the desert surrounded on all sides by huge sand dunes. Hydration is the next problem to solve.
My weight dropped below 140 for the first time and I’m sure water weight was a good part of the weight loss (yes, yes, denial again. I know). I can’t drink from the water bottles while I ride because I can’t let go of the handlebars with my good hand to get them. So we have to stop riding whenever I wanted to drink. Before you suggest the camelback my cheek muscles don’t work so well. I can’t use a straw (or kiss for that matter). On the plus side I can finally say without fear of contradiction that I don’t suck (badaboom! We’ll be in town till tomorrow and I’m available for weddings, birthdays and bar mitzvahs). Whenever our support crew meets up with us Rae asks Ian how much I have drunk. He usually tries to change the subject. One of the good things about this arrangement is that Ian generally gets in trouble for my infractions. “Ian! You’re supposed to be looking after him.” Whenever I stop riding, the support crew descends upon me, removing layers of clothing, putting on others, applying sunscreen, filling water bottles, cleaning wounds, wiping off blood, throwing peanut butter sandwiches at my face. Then we get back on the road. To be honest I feel like a formula one racer at a pit stop.
There is no GoPro footage today because the mount snapped. All the vibration finally took its toll. It may be tested by BMX racers, mountaineers and extreme skateboarders but did anyone think to send it on a little road ride? Huh? Anything to say Mr. GoPro man?
Since the beginning of the ride two people have mentioned that I have been ruining my one fall per 100 miles average. Well, not to disappoint, I did manage to fall today. Right in front of Rae and Ian, too. Both of them witnessed me do it. I was barely moving and we’re still not quite sure how I managed to fall. I guess I’m just talented, what can I say?
Towards the end of the day we crossed the Colorado River and are now in Arizona. We spent what seemed like way too much time on Highway 10. Compared to the bleak moonscape of the desert in the morning it was quite the contrast. We began the day in total isolation and by afternoon we were riding along the interstate shoulder, dodging chunks of rubber and engine parts; just four feet from instant death.
Rae commented that my voice is getting worse. I responded that that was because whenever we’re together she’s shoveling food down my throat.
Rae: “You’re losing weight, here eat this sandwich.” Me: “Hmgh phut mmhg phut.” Rae: “Then I want you to drink this protein shake.” Me: “gmgh frchk phut.” Rae: “Ian. How many times did he pee while riding?” Ian: “I think we can still catch the Cubs-Mets game.” Rae: “Eat this hard boiled egg, it’s good for you.” Me: “Shphung phut gugh” Rae: “I really don’t like the way your voice sounds.”
And so it goes. Life on the road with Team: Ray Goes For A Little Ride.
October 19, 2015. Brawley, CA. I have become Rae’s science project. She consulted with several nutritionists before the ride. She weighs me before and after each meal. She weighs me at the beginning and end of each day. Everything I eat is dictated to Lynny, Luci or Andi and meticulously catalogued in a little blue composition notebook.
If I eat anything on the road, I take a picture of the nutritional facts and send it to her. When we come in she grills Ian about how much and what I ate extra, to write in her notebook. Rae has also put Ian in charge of making sure that I pee every two hours, although how he’s supposed to do this I’m not sure. Check my levels maybe? We went to a specialist in St. Louis, M.O. a month or so before the ride. One of the things that he said that made the biggest impression on me is that when he sees people get into a negative caloric balance (as in expending more calories than what they consume) the disease progresses more rapidly. I don’t eat that much when I ride in general so, that’s obviously something that has to change. At this point my whole life has become an experiment. I’m riding across the country with ALS.
Tonight we stopped in Brawley, CA. The innkeeper lent us his grill, and brought out a folding table and we dined alfresco in the parking lot. Consuming calories presents several challenges. Apart from the sheer quantity that I have to eat–I burned 5,338 today alone–getting it from my mouth to my stomach can be an issue. When I try to drink something there are generally two things can happen. A) It can go down my throat. Or B) It can come back out my mouth (sometimes with surprising velocity). And today I added an option C) to my repertoire while drinking a cold frappuccino when it came back up out my nose. Eating, presents its own set of challenges. Once I put food in my mouth it’s a considerable investment of time before I can talk again. During dinner conversations, if there is something I wish to contribute it’s generally three topics along before I can safely talk without the people around me needing protective clothing. It’s as if my life is on a perpetual five minute delay during dinner.
When we left Descanso this morning we hit uphills right away. Strangely I feel more confident going uphill. I feel like I have more control. Going downhill, I’m always on the brake for fear of getting up too much speed and hitting a pothole or a rock and losing control of the bike. The option of holding the drops is something I no longer have. So I can grip the brake hoods with my good hand which gives me stability (or at least the illusion thereof) but I have no ability to brake. Or I can reach release my deathgrip and extend my fingers to the brakes but I lose all stability. For 20 miles of today’s ride the road was in significant disrepair, the road was so shaky that my GoPro fell off, along with the mounting hardware which also serves to keep my hands attached to the bike. To be honest, at the end of the road, I was shocked that my wheels were still attached. But our support crew met us along the way and some makeshift repairs were done using Ian’s electrical tape (who the hell carries electrical tape while riding a bike?). And we headed back out.
As the day progressed and we hit more downhill. A lot more down hill. With each descent I became a little more confident (or stupid depending on your perspective). As I was going downhill watching one of my riding partners sail on ahead of me, I thought to myself, this is silly. Either I can crawl across the country at 10 mph and be safe, or I can say fuck it, throw caution to the wind and let it rip. Ten points if you can guess which one I didn’t do.
“Gonna leave this world for a while. Now I’m free………”
October 18th, 2:30AM Chicago, IL. I had spent the night at our son Manu and his partner Gilly’s apartment in Chicago. After not enough sleep, I left for the train station. Had not gone more than 10 paces, before I tripped on a crack in the sidewalk and suddenly found myself staring at the silhouette of my shoes against the night sky. I took inventory of my limbs and they all seemed to move. Scanned the area for things that may have fallen out of my pockets (yes I’m a pro at this). My knee was bloodied again and jeans were torn, but as I picked myself up I told myself it was good to get the days fall out of the way. Now it would be safe to get on the bike. The rest of the journey, apart from almost missing my flight, proceeded without incident. Later this week we’ll be someplace down there cycling back the other way.
Getting the diagnosis of ALS (as I imagine with any major illness) can be an incredibly lonely moment. There is a tectonic shift in your world and you suddenly feel separated from everything and everyone. Today I was greeted at San Diego Airport by Rae, Dottie and Pete. Pete is an old friend from back in the Kibbutz where Rae and I met. We proceeded straight to Ocean Beach Park, where we were met by people representing many facets of our lives. As I mentioned before, Pete and his wife Dottie, who now live in L.A., Raif, Jessica, and their new baby, Penny. Raif was the tutor for two of our children’s Bar Mitzvah’s 11 and 9 years ago respectively. He is now a Rabbi in L.A. He chanted a prayer for safe travel that had been inscribed on a plaque from Sinai Temple of Champaign to accompany us on our ride. Then I got a message from Rachel, one of the labor and delivery nurses I worked with: “Everyone on labor and delivery at Carle just had a moment of silence/prayer/reflection/solidarity in honor of yourself and those riding with you. You better have felt it, it was powerful.” And yes, I had definitely felt something, but had attributed it to the burrito I ate for supper the night before in Chicago. I’ll try and pay more attention from now on. Dave Johnson, the brother of Paige Johnson Parkhill from our hometown, who herself has ALS and was one of the first people to reach out to me when she heard of my diagnosis. Dave helped me carry my bike to the beach. Marilyn and Larry, neighborhood friends that now live in Riverside, came to see us off and brought us home grown avocados. Ruth, a friend who has known Rae since the 60’s and was one of our road angels in San Diego was also there. How foolish of me to feel alone.
We did the wheel dipping ceremony in the Pacific and headed up the mountain on our way out of town. Today’s ride was more just to get out of town and not have to deal with Monday morning San Diego traffic. So 47 miles and 4,000 feet elevation in our first day. Tomorrow we get down to some serious riding.
The crazy 8. The people accompanying me are also a collection of my riding past and present. Rae, Luci, Lynny, Ira, Ian, Daniel, Andi and yours truly. As I have mentioned, Ian and I have ridden cross country before. We finished that particular ride together but not in the manner we had anticipated. In a sense, this ride is unfinished business for us. Luci? Well, one day I was at work and I got a text from Luci: We just entered you into a 24 hour bike ride. Your name for the ride is “Midway Midwife, I brought you into this world, I’ll take you out.” Any questions? No ma’am. Believe it or not Rae was the person who introduced me to cycling in the first place. When I first came to the States she borrowed a bike and showed me around town so I wouldn’t get lost. I don’t think this is where she thought it would lead.
We are spending the night at Camp Oliver near Descanso, CA. It’s a summer camp owned by a Catholic order of nuns. Daniel worked here as a counselor in the early 60’s. Daniel’s, sister Michele is currently the director of the Sisters of Social Service which runs this camp and they have invited us to spend the night. This is the first time that Daniel has been back since his counseling days 50 years ago. Andi, Daniel’s partner, just started riding a bike recently, and joins us on her longest ever cross country trip as navigator, cheerleader, sustenance provider and will also ride when she can. Lynny and Ira who have been friends since forever, are avid cyclists. They knew what this ride means to us and wanted to be part of it. I figure between the Nuns, the Temple Congregation and the labor and delivery nurses we have a lot of bases covered.
Had my first ride related dream last night. At least that I recall. Started out in a big city by the sea. The map said LA. As I was riding out of town, there where lots of roadworks (although not much traffic). This makes sense, I think, since I’m more worried about the terrain than traffic. Eventually, the route got off the road and was a path through the woods. I kept checking the map to make sure I was on the right path but the map said yes. The path was mainly pine needles and half hidden tree roots. As it got steeper, I left my bike behind and started to walk instead. After what didn’t seem like any time at all, I ended up back in LA by the coast where I had started. The last thing I recall was a guy driving me out of town to get back to where I had left my bike. We passed a building where a black woman was standing in a window playing a stringed instrument that I didn’t recognize and singing (to me, I think) as I passed. Interpretation, anyone?
This morning, the person who will most likely be my last student had his Bar Mitzvah. I listened to some of the recordings I made for him 5-6 months ago. I had to listen for a while before I could actually acknowledge that was my voice. This Bar Mitzvah was particularly poignant in that thirteen years ago, on a rainy November afternoon, I spent some quality time with his parents. And eventually him. In his speech, he mentioned that I had been there for his birth. He thanked me for being a big part of the two most important events of his life so far.
Bike and arm modifications are finished. Thanks to all who participated. Have a couple of wrist and thumb braces to give my hand stability. No, the bolt does not go all the way through but might actually be helpful if it did. I also have an adjustable head and neck support that clips on and off as needed, to my riding shorts.
I have an elbow brace which I do need but weight is an issue. The wrist brace weighs a few ounces but even that adds an extra layer of difficulty with arm mobility. May just save it for days when I have lots of downhill. We put a bar across the top of my aerobars which, along with the wrist brace, will hopefully stop my hand from popping off the bars every time I hit a pothole. And as an added bonus, it also doubles as a GoPro mount.
Lastly, I have a shoulder brace. My shoulders don’t really need bracing but I could do with the padding on what I see as the inevitable falls. Is it comfortable? No, but it may be the difference between finishing the ride and not. I looked at more substantial gear with better padding but I looked more like an extra in Game Of Thrones, so went with the minimalist approach.
Whether I’m awake or asleep, it appears that this is the ride of my dreams. Although these are not exactly the circumstances under which I envisioned doing it. It’s been almost ten months to the day that the neurologist suggested we do the ride this year. Ten months since the idea was just a germinating seed. Ten months since I thought… there’s no way in hell I can be ready this year. Yet here we are. There are so many people I owe for the fact I’m actually about to do it. I needed pedals. Pedals were donated. I needed back-up wheels. Wheels appeared. The cycling community donated money for the spare parts I’ll need on the ride. Drew, my mechanic, came in on his days off to get my bike ready. Tomorrow it all comes together and we hit the road (hopefully, just figuratively). Took this photo on my last Illinois ride. I’m guessing the scenery will most likely be a bit different tomorrow.
I keep a journal. Have for as long as I can remember. It’s where the seeds of most of the ideas I write about come from. I wish I knew if the difficulty I’m having holding the pen to write is because the weather is getting colder or disease progression (yes, this far in I can still find a use for denial). I am constantly revising what I will do with the available time we have. Certain tasks take precedence based on which parts of my body are being affected. I try to come up with a tentative timetable of ability. But unfortunately ALS presents a moving target. The only time we can ever be really sure of is now. And now! This is what’s about to go down.
Alright! Someone finally asked why I hadn’t written about Leonard Cohen yet. Well actually it wasn’t so much a question as it was a comment of surprise that I hadn’t written about him yet (thank you Rachel). But close enough. He may not be your cup of PG Tips, but if you’re coming along for the ride you need to know about me and Leonard. He has always been on my radar; I still have some of his stuff on vinyl. Not to mention a functional turntable to play it on. But the last few years I had rediscovered the depth of his back catalogue, and it was on fairly constant rotation in our house. Then with the diagnosis his music just expanded to fill all the available space in my soul:
Going home without my sorrow
Going home sometime tomorrow
Going home to where it’s better
– “Going Home”
One day while I was still working I’d had a particularly rough day. Over lunch I had called to confirm the time for an appointment I thought I had with a speech therapist that was coming up in a few days. The receptionist could find no record of it, but offered to give me the next available appointment which was another two weeks away. My voice was beginning to fade and I was greatly anticipating this visit. This was fairly early in the process, and I still clung to the hope that something could help at least slow down that particular loss of function. But hope can be a very tenuous thing. When the receptionist said she couldn’t find any record of the appointment, I just lost it. I became the angry patient railing against a powerless receptionist, about an uncaring system. It wasn’t one of my finest moments. When I got home Rae made the mistake of asking how my day had been. Most of the time I’m fine, but every so often the magnitude of what is going on hits me like a ton of bricks and overwhelms me. This was such a time and I just broke down crying. Rae held me and after a while said quietly “I wish I had words.”
I’m guessing Rae has moments like this too, although I have not witnessed any breakdowns on her part. Which is probably a good thing. It means we’re coordinating things and not having breakdowns at the same time. I wish I had words, too. That’s the thing, I’m the one going through it and I don’t have the words. But Leonard. Man, does Leonard have the words. If you have five minutes watch this video. See it as part of the blog:
If it be your will
That I speak no more
And my voice be still
As it was before
– “If It Be Your Will”
Ian, an old friend from way back, will be joining us on the ride. This is far from the first time we have ridden together. We once rode the Lewis and Clark trail together to raise funds for two local charity organizations. The memory of that ride is never far from my mind as we prepare for this one.
Tuesday, May 11, 2004. Williston North Dakota. We woke up to hail, freezing rain and 40 mph winds out of the direction that we had to ride in. Not to mention a 20 degree wind chill. The weather had been going from bad to worse. This ride was self supported, so we were carrying a minimal amount of gear. So naturally all we had to wear were riding shorts and short sleeve jerseys. The hail stung my exposed legs and arms as we went for breakfast. People could tell we were not from these here parts. I think it was the flip flops that gave us away. We had to get some warm clothes, but this was North Dakota before the oil boom. The nearest bike store was in Bismarck more than 200 miles away. Our only option was a local sporting goods store. After decking ourselves out in warm, dry clothes we finally rolled out of Williston around 10 o’clock. This is how, in one of those amusing quirks of fate, I found myself (Mr. Vegetarian) riding around the Badlands of North Dakota fully decked out in GoreTex, camouflage hunting apparel.
We thought we would ride South and deal with a cross wind instead of East into the brutal headwind. Not the best idea. Staying on the road was a full time job. I’m sure the scenery is beautiful, but we couldn’t see more than a half mile in any direction. We would struggle to the top of a hill and see . . . another hill. The entire day was an uphill struggle (literally and figuratively). Eventually we had to turn East and ride into the wind. We made it Watford City. We would have gone further, but it was 60 miles of wind, rain, hills, and Badlands to the next town. In 4 hours we had managed 47 miles although arguably zero miles would have been a wiser choice. Each day we were getting diminishing returns for our effort. When we found a place to stay I made the mistake of checking the forecast for the next day. The forecast called for snow. I’m convinced that if you watch The Weather Channel long enough you will start to believe the apocalypse is at hand. The receptionist at the motel mentioned that tomorrow would be his 20th wedding anniversary. And the last time it had snowed on that day was 20 years ago on their wedding day. As bad as this day had been, the following day was worse. A lot worse. An entire year of meticulous planning and extensive training was thoroughly and efficiently undone in 48 hours by Mother Nature. Based on this experience I’d say 90% of everything that is going to happen in the four weeks that we’re on the road traversing the continent is beyond our control. Ian thinks I’m being optimistic.
Well my friends are gone and my hair is grey
I ache in the places where I used to play
– “Tower Of Song”
Our eldest daughter Lisa and her family live with us. She hates Leonard Cohen. Not because she hates Leonard Cohen, but I think because in her mind his music defines my diagnosis. One morning I was brushing my teeth and had his album “Old Ideas” playing on my iPhone. Lisa groaned from her bedroom, “Really, Dad? This early in the morning?” It was as if I’d been caught sneaking a drink before breakfast. She may claim to hate him, but she knows his every song from the first note. Lisa’s problem is in part that the music “is so damn depressing.” But if you listen, no matter how bleak the landscapes he paints are he always infuses them with a glimmer of hope and optimism. Sometimes it’s obvious and sometimes you have to dig deep to find it, but it’s there. I think this is the root of my infatuation with his music and words. That sense of optimism in the face of overwhelming odds often told through a lens of self deprecating humor. I keep waiting for my obsession with his music to subside, but if anything it grows with each day. Sorry, Lisa.
The sands of time were falling
from your fingers and your thumb,
and you were waiting
for the miracle, for the miracle to come
– “Waiting For The Miracle”
Talking to someone about their illness can be such an awkward thing. Do you just ask or do you assume that if they wanted to talk about it they would do so without being prompted. For my part I prefer that if you are curious about how I’m doing you just ask rather than wonder. The answer you get may be more than you bargained for, but that’s the risk you take. The other day someone asked me to talk about my battle with ALS. It’s a struggle, yes, but battle? No. To me the word battle implies an engagement in which the outcome has yet to be decided. With ALS the outcome is not in question. Yes, there are daily struggles as you adapt your life, your environment, your relationships, to ever increasing limitations. Struggles as you stubbornly try to cling to a certain ability while your brain softly whispers, “Let it go, Ray. Just let it go.” I don’t see my relationship with the disease as a battle; it’s more like I’m being forced to develop an intensely intimate relationship with someone that I wish I’d never met.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.
– “A Thousand Kisses Deep”
This world and its troubles are not ones that submit easily to solutions. It seems that humans have always faced the same challenges. The circumstances may change, but the problems we face today are in many ways the same as the problems our ancestors faced. There will always be good and bad, beauty and suffering, life and death. All the contradictions that continually surround us, sometimes simultaneously. I have heard it said that time heals all wounds. It does not. Life is about what we do with these wounds. It’s not about “getting over it.” It’s about how we learn to process these things and move forward with them as part of who we are instead of letting them hold us back. As Rae once said about another subject but I think it applies here also: “we have to embrace the beauty and process the suffering and hopefully come out at a better place.” This is what the words and music of Leonard Cohen do for me. Illuminating the darkness with hope. Not hope that things will get better, but hope that where I’m going isn’t as dark as I imagine it to be.
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.
I am now completely packed. The bag I will be living out of for the next four to five weeks is next to the bed. I checked the forecast for some of the places that we’ll be going through in the first week. It is currently 97 degrees in Phoenix, AZ with 0% chance of precipitation. I have packed long pants, sleeves and a raincoat.
So come, my friends, be not afraid.
We are so lightly here.
It is in love that we are made;
In love we disappear.
– “Boogie Street”
Each letter in the Hebrew alphabet has a corresponding numerical value. Alef is 1, Beit is 2, Gimel is 3 and so on. The letters Chet and Yod have the value of 8 and 10 respectively. These two letters spell the word “Chai” which is the Hebrew word for life. We leave on the 18th of October. The word Chai has a combined numeric value of 18. I will take this as a good omen.
Peace, love and midwives
P.S. And even though it all went wrong
I’ll stand before the Lord of Song
With nothing on my tongue but Hallelujah
A great deal of what I write starts simply by pondering the answer to a question I’m asked. I have intentionally steered away from religion and spirituality just because it courts controversy. But the question keeps coming up in various forms: “How have your religious beliefs influenced how you have accepted the diagnosis?” Well, you asked. I should begin by saying that any beliefs I may have about a higher power are informed more by the things I saw on a daily basis in my work as a midwife rather than a specific set of religious beliefs. When someone comes for a prenatal visit the nature of what we would discuss would evolve over the course of the pregnancy. Early on it’s generally about changes going on in their body and a lot of “is this normal?” The middle part is the honeymoon stage where everything is on cruise control. Then somewhere around 32-34 weeks it finally sinks in. Shit. This baby’s got to come out at some point. “And refresh my memory, where’s it coming out of again?” A lot of people at prenatal visits would ask if I believed in God. I’m not sure if there’s a correlation but usually the question came up in that last part of the pregnancy.
Before I will answer the question of whether or not I believe in God I will first ask you to define who or what you mean by God. I’m always pleasantly surprised by the variety of answers I get. There is a process going on inside the people I’m talking to. The creation of a new life from just two cells. Once those two unique cells combine the division begins. First from just one into two. Then a couple of trillion cell divisions later, voilà! A new human being. There are so many opportunities for it to go wrong, yet for the most part it does not. Throughout the process every cell knows what it’s going to be. A red blood cell, a finger nail, an intestine. Within the micro-universe of every cell in our body that has a nucleus is the entire DNA blue print for a new one of us. I mean who comes up with this shit! It’s a magnificent process. I believe Darwin’s Theory of Evolution to be sound and scientific, yet I also believe the process of conception to birth is too beautiful to be the result of random process of evolution. Even given the countless millennia of time I can not see how we arrived at this point solely through a process of natural selection and chance. I feel that something must have set the process in motion. Whether or not that something is still shepherding the process along I am uncertain.
People ask if I eat anything special before I ride. The answer is yes but not in the way you think. Yesterday I ate a couple of leftover home baked cranberry scones with a cuppa tea (Brook Bond PG Tips, always) before I left. Even when I could swallow without difficulty, Power Bars made me gag and have not been part of my regular routine. Normally I train to peak around mid to late summer. When I started training to ride across the country there was still snow on the ground. The whole year has been a steady build up to this one event. The corn has been planted and harvested. Winter, Spring and Summer have come and gone and I’m trying to figure out a distance and pace I can maintain daily for a month with a body that changes unpredictably. It was cold yesterday. By cold I mean in the 50s but the cold is not a friend of a body with ALS. There was a 20 m.p.h. northeasterly crosswind. Any strong wind that is not blowing parallel to the direction I’m riding offers yet another challenge to staying upright. The going was slow but steady. But once I turned around to come home I just hunkered down in the aerobars, took it up to 30 m.p.h. . . . and let go. The thought popped up momentarily that I should probably slow down before proving, the hard way, the validity behind Darwin’s theory of natural selection, but the thought was immediately suppressed. There’s just something about riding with the wind. The road rushes by underneath you as you fly along in a noiseless bubble. The only sound is the tires on the blacktop as the world flies quietly by. This is why I ride. There is nothing that can compare to the thrill of the open road and the fiber rush from a home made cranberry scone.
December 15, 2014. Intestinal cancer runs in my family so I have to get a colonoscopy every five years. In a rather unfortunate oversight in scheduling I saw the neurologist for the first time the day before I was set up for a routine colonoscopy. It was the day the possibility of ALS was suggested for the first time. This wasn’t how it was supposed to happen. I always thought I’d meet my end in a head-on collision with a massive chunk of farm machinery out in the middle of nowhere. So with a different perspective weighing heavy on my mind I came home and had to drink that awful pre-colonoscopy bowel prep. I spent the afternoon trying to wrap my brain around the probability that I had a terminal illness while periodically shitting my brains out. It was a long day.
The following morning when they wheeled me in to the procedure room there were Christmas carols playing on the radio. I generally forgo any sedation for the procedure. This always seems like a good idea till we get to the junction of the descending and transverse colon. I was gripping the side rails of the bed with what felt like enough air to re-float the Titanic being pumped into my bowels and two nurses in my face coaching “Breathe honey, breathe. That’s it. You can do it.” All to the joyful strains of “Deck the halls with boughs of holly, Fa la la la la, la la la la.” Before you read too much into my opinions this is what passes for a religious experience in my life. After the procedure the doctor gave my bowels a clean bill of health and said “See you in five years Mr. Spooner.” I remember walking home and for the first time in my life thinking wouldn’t it be something if I actually got to keep that appointment.
Given what I have shared thus far it might be hard to believe that I am a very private person. Rae once told company that she didn’t salt the food because I had high blood pressure. I asked her to please never say that again. I had significant reservations about opening up to the public about my diagnosis, but ALS isn’t exactly something you can hide. In July I had a Bar Mitzvah. Initially it was planned as a small family affair. But we don’t have a small family. We stopped counting at 250 guests. As a tutor I had prepared many students for this day but found it very challenging for myself. It was difficult for me to separate the meaning of the service from the reason I was actually having the service. My family all participated and stood by me at one point or another. There was a point where I had difficulty maintaining my composure and Rae immediately came up and stood by me. She held my arm and helped me go on. The service was an affirmation of the power of faith and family in facing adversity. Everyone, family and guests, were so grateful to have been part of the celebration. It is that communal sense of “Tikkun Olam” (healing the world) that will sustain us.
The Universe is unfathomably vast and still expanding. Light travels at around 188,000 miles per second. The light we see from the stars in our sky began its journey towards Earth when the Roman Empire was at its apex. When we gaze at the night sky we are looking into history. The light we see from galaxies in the Hubble telescope was emitted around the time the Earth was being formed some 4.5 billion years ago. There are countless stars surrounded by countless planets. While we have no proof, and given the distances involved, doubtfully ever will, odds are that this is not the only planet that harbors life. On this planet alone there are close to 7,000,000,000 people. Maybe it’s the limitations of my human brain but I personally can not imagine that the entity responsible for all this is even aware of my existence (let alone has the time to have an opinion about the gender of the people who I may have slept with). That’s not to say we should not pay homage to the magnificence of it all in prayer, deed, meditation or song. I just don’t expect anything in return. To have lived is already enough.
Back in the dark ages when I took Psych 101 I recall studying psychiatrist Elisabeth Kübler-Ross’s theory about grief. She suggested there were a series of five emotional stages that a person who experiences a life-threatening or life-altering event goes through. The five stages are denial, anger, bargaining, depression and acceptance. Not everyone will experience all five of the responses and they can occur in any order. But for the sake of argument lets start at the top. Denial: No, not really. I may not have greeted it with open arms, but I was able to connect the dots of several, seemingly unrelated symptoms the moment the diagnosis was suggested. Anger: What’s the point. Even when I am pissed off no one can hear me. Bargaining: Yes I did indulge a little here. I made a donation to the ALS Association thinking perhaps what I gave for the Ice Bucket Challenge wasn’t enough. Right after sending in my donation I got a thank you email. It read:
“We estimate that 15,000 – 25,000 Americans live with ALS at any given time. When you compare that number to other diseases, it seems rare. But, consider this – because ALS is 100% fatal, people living with the disease are not with us long enough for that number to increase.”
It was a tad jarring to the zen of my morning cuppa to say the least. 100% fatal. Now, I’m not a mathematician or anything but from where I stand that strikes me as a whole shit ton of fatal. You could argue that life is 100% fatal. And you’d be right of course but, as I have alluded to before, you can hide from that type of fatal for the first 5 or 6 decades of your life without too much effort. So what was the next stage? Depression, I think. Well crap, who has time for that? The email helped snap me out of whatever malaise I might have wanted to indulge in and get on with the time we had. With the term “100% fatal” bouncing around my brain I went to a campus store with my sister Lynn and had a t-shirt made. Sometimes you need to be handled with kid gloves and sometimes you just need a smack up side the head with a dose of über reality.
Three weeks from today, if all goes according to plan, we’ll be camped in the mountains east of San Diego. Question of the hour: Are you getting nervous now that the ride is getting so close? Yes and no. Six months ago I was apprehensive about my body’s ability to hold out. Who knew where I would be in terms of functionality. But here we are three weeks from departure date and I can still pop off 100 miles. So the closer it gets the more relaxed I become. It’s almost here and I can still ride. Yesterday we averaged 17.7 mph for the 105 mile round trip. And only fell off the bike once. Although I also fell off last time I rode too. My left hand doesn’t hold on to anything. It just rests on the handlebars. Both accidents were related to unanticipated roughness in the road and my hand lost contact with the bike. As I see the bike bouncing out of control underneath me (in slow motion no less) I just try to turn the wheel to the left so my good side, where I still have a little muscle for padding, hits the road first. This goes against every grain of biking sensibility I have. Everyone knows you turn to the right so the impact doesn’t damage your gears and shifters. However, with regards to falling the correct way both falls were resounding successes (although my right shoulder, elbow, hip and knee may beg to differ). The last couple of rides I’ve been joined by Ira who along with his wife Lynny will be be joining us on the trip. I’ve known Lynny and Ira approximately forever. Rae has known them even longer. Ira has a talent for concisely, eloquently and matter-of-factly summarizing all he sees. “That’s one fall per 100 miles you’re averaging” he said as we rode on after the most recent spill. On the plus side I have 3,000 miles to perfect my technique. But also, unless we can fix this, I’m going to leave quite a chunk of my hide on the asphalt between California and Florida.
I met with the team of engineering students to try on some prototypes of hand, wrist and neck supports. These are some of the prototypes they have developed so far.
This is who I channel when wearing it.
Thank you Hong, Carl, Sharon and AJay. My shoulder, elbow, hip, knee and wife thank you for your continued efforts. During the meeting a deep cut on my elbow kept oozing. I assured them that next time we met I would try my best not to be covered in blood.
I’m told I have a disease that is 100% fatal. That being said there is risk inherent in walking out the front door in the morning. ALS is a terrible thing, yes. I’m not going to pretend it’s not but along with it come some blessing. I have talked much of the “fuck it” list and doing things you’ve always wanted to do. The general association is with these types of lists are epic endeavors and challenging feats. But life is a web held together by uncountable fine strands. And the breaking of even the most seemingly irrelevant of these threads can cause the whole thing to unravel. I have been given the opportunity to do some things. But also to not leave things unsaid. Sometimes the finest of threads can be the only thing holding a person to the ledge. And sometimes all a person needs is to know is that you care in order to keep going. All it takes is a call, a text, a few words to the person sitting or lying next to you. Sometimes it’s not your fault you can’t find the right time. The person you want to talk to can be distracted. Maybe it’s their morning to be an arsehole, maybe they are absorbed by yet another damn cat video on YouTube. You tell yourself now just isn’t the time to say what’s on your mind. You tell yourself there will be a better time. But as Janis once said “Tomorrow never happens. It’s all the same fucking day man.” Tomorrow has a knack for becoming the day after tomorrow, the week after next, the year after never. Now is the time if for no other reason than you did your part. Don’t leave things unsaid. Now is the time.
Since being diagnosed we have been connected with a lot of resources. Resources we didn’t even know existed until we needed them but are very thankful they exist. We see the ride as an opportunity to give back to those who have helped us. To give back while we can, and hopefully to raise a little awareness about ALS along the way. People say they admire how we’re facing this. But none of us really know how we’ll face a situation until actually confronted with it. It’s easy to face a challenge head on when you have an incredibly supportive group of friends and family standing beside you. I am going on a little ride. The ride even bears my name. But it’s not my ride. There are a number of people taking a significant chunk of time out of their lives to join us. Ian, Luci, Lynny, Ira, Daniel, Andi–it’s their ride. For everyone who has gone through this or will go through this. For everyone who has watched or cared for a loved one as they have gone through this. This is their ride too.Ray
I ride a Schwinn Paramount Ti. I bought it in 1999. At the time we had never owned a new car and the Schwinn cost more than both the cars we then owned combined. In the 16 years I have owned the bike I have never thought of buying another one. I might have occassionally looked at other bikes, but only in passing and only to admire the workmanship and geometry. Never with the thought of actually riding it. OK, well once last winter up in Minneapolis I rode a fat tire bike. But only because it was snowing. That was the only time. I swear. Please don’t judge me.
I put between 5 and 8,000 miles a year on my Schwinn. At this point it has upward of 100,000 miles on it. I need it to carry me 3,000 more. My mechanic Drew has it set up so I can run the front and rear shifting off one side. Additionally, he now has both the front and rear brakes running off the right lever. We have a prosthetic maker and a group of engineering students from the University of Illinois trying to figure out how to keep my left hand from popping off the handlebars every time I hit a bump in the road while at the same time allowing me to move freely from aerobars to handlebars. They are also working on a device to hold my head up because my neck muscles are weakening. My head weighs 8 lb give or take, depending on what’s on my mind. No big deal while you are upright. But hunkered down in the aerobars for 7-8 hours it can become dead weight.
Have I mentioned that people are asking a lot of questions? Here’s one I don’t have an easy answer for: “So why are you doing this?”
“April 3rd, 1989 England’s Lake District. By the time I had reached the road leading up to the Hard Knot pass, I was already soaked through. As the road (if you could call it that) got increasingly steeper I began zig-zagging from side to side in order to keep moving. I felt that as long as I kept moving I would be okay. In the distance I could see the point where the rain turned to snow; the grassy slopes and jagged granite peeks seemed to turn white along an even line. The further I went, the stronger the wind became. Up ahead I saw someone walking hurriedly in my direction. He was attired from top to bottom in yellow rainproof gear and in every crease and fold of his clothing, not to mention his mustache, there was ice. He looked like an Arctic explorer. He said that he had been hiking the hills when the weather turned nasty and that the winds above the shelter of the valley were at gale force. He advised me to turn back then continued on his way down. I stomped my cold, wet feet to keep the circulation going, shook the rain off my poncho, looked up towards the snow and contemplated the effort it had taken to bike this far. I knew that I wasn’t going to turn back. The decision wasn’t mine to make. Something over which I had no control was already turning the pedals again. I passed a herd of sheep nonchalantly chewing grass, apparently oblivious to the howling winds. Maybe it was my imagination but even they seemed to be shaking their heads as I rode past.”
This was my first long distance bike ride. Common sense would seem to dictate that I would never want to do anything like it again. But for reasons I can’t pretend to understand this was just the beginning. I was 4 days into a bike ride up to Scotland. And not for the last time I was woefully unprepared for the conditions I had ridden into. The ride was a hastily conceived endeavor for me to see something of England before we returned to the States. Rae and I had been traveling for three years and would soon be returning to Urbana with our three month old daughter Lisa. I was unsure if we would return to England for any length of time and I didn’t want to be one of those London-centric people who grew up in England and had never been North of the Watford Gap (England’s equivalent of the Mason-Dixon Line). I was riding an ill-fitting, second or third hand, 10 speed Raleigh with shifters on the downtube that I had bought for commuting to work. For rides of 10 miles or so on city streets it was fine. For what I was doing now, though, not so much.
“Finally, the gradient began to even out and my goal was in sight. At the top of the pass was a stone marker indicating the boarder between Cumbria and Lancashire. Once at my destination, however, I was faced with the question that we all must face at one time or another after achieving a hard earned goal: “well shit, what now?” I couldn’t exactly enjoy the view because I could hardly see anything. Just off to the side of the road I saw a sheltered area behind a grassy bank that seemed relatively dry. I cleared away the sheep droppings for a place to sit and got out a bag of dried fruit and nuts from the pannier bags on my bike. While eating, I took my shoes off and wrung out my socks. I tried to remember how long it had been since I had felt my toes and wondered whether I should be concerned. I looked up at the jagged grey stone peaks on either side of me. I got my camera out to take some pictures; not because the scenery was particularly spectacular, but because I couldn’t actually believe I was there. This morning I had been in an old farmhouse, down by a serene lake, enjoying tea and toast in front of a warm log fire. Now I was up in the hills, in a virtual blizzard, surrounded by nothing but snow, rocks and sheep. But perhaps strangest of all, I didn’t want to leave. However, as I watched the snow blow horizontally past my cozy nook, I knew that I couldn’t stay here much longer. While I had been moving, I had kept warm but now the cold was starting to make itself felt. It was time to move on.”
Rae loves to cook. She is taking her duties of keeping my weight up very seriously. She’ll need to replace 5-6000 calories per day once we’re on the ride. And that’s just me. I have on occasion felt her poking my hips at night when she thinks I’m asleep. Only to hear her roll over and sigh disapprovingly. She has looked up making power bars, protein shakes, mountains-of-carb meals. Although frankly I think if she could just skip the whole process and mainline me clotted cream she would. I’m not a big eater which makes things even harder. One day she was listing off potential foods and asking what I might like. I responded that it didn’t matter what she made. The fact that it was made by her for me was all that was important. The fact that it was made by her would sustain me. She hesitated momentarily not wanting to be side tracked “Yes, but . . . ” she responded.
Over the years I have made quite a few modifications and additions to my Schwinn. Some I keep, others I change back. Up till this year the bike was exactly how I wanted it. Essentially an extension of me. Today I rode my second century with the new upgrades. It was a hilly ride and I used every modification repeatedly. But as I was shifting and braking one handed it was the work that had gone into the bike that struck me. I know it meant something to those who worked on it and donated parts. And that kindness, like Rae’s cooking, will get me through. At this point my bike isn’t just an extension of me, it is me.
“Reluctantly, I picked up my bike and walked back to the road. I stood for a moment, bracing my back against the wind and watching the snow as it swirled around me on down into the valley on the other side of the pass. To descend would be a return to reality. However, up there on the pass, wet and shivering from cold, was freedom.”
The significance of the moment was lost on me at the time. But the bike had me long before I had it.
People ask a lot of questions when you’re planning on doing something crazy. Sometimes I think I should make up answers because the real reasons might seem trite. “Do you listen to music when you ride?” No, I prefer the sound of the wind in the rustling corn. “How do you occupy yourself?” Watching silos and water towers get bigger. “Doesn’t your butt hurt?” I don’t have one. “What do you do when you arrive at your destination?” Turn around and ride back. “Do you stop and eat?” Nope. “Oh, come on, you must eat something.” Nope, it’s just 100 miles. So you can see why it might be easier to make something up. I ride my bike to ride my bike. It’s that simple. It’s my moving meditation. The fact that turning the pedals actually gets me somewhere is almost secondary. I have often said anyone can ride 100 miles. All you need is a halfway decent bike and a very understanding spouse. But I’m assured by most people I meet that jumping on the bike and riding 100 miles before lunch isn’t normal human behavior. When I’m on the bike I feel the disease can’t touch me. I know that’s a myth. Sitting here at the computer typing with my one good hand I can feel every muscle in my body fasciculating. I really have no idea how muscles that are in constant motion (even when I sleep) can be wasting away. It doesn’t hurt, but it is a constant reminder that my body has another agenda. On my bike I just feel the wind, the rain, the sun, the cold (the teeth of the occasional dog).
I have never asked “why me?” To be honest it makes perfect sense. I have pushed my body in every imaginable way for as long as I can remember. It protests, I ignore it. Mind over body. Now it’s body over mind. Several helpful individuals have gone as far as to suggest I might have brought this upon myself. “Well, you know . . . ” On October 18th eight of us will set out from San Diego. Most of the focus is on me though, but I don’t know which is harder, being the one going through this or being the one watching a loved one go through it. In the grand scheme of things I’m not sure there’s much of a difference. Rae and I have been together 33 years. It’s difficult to separate us out as individuals at this point. We’re Rae and Ray. We’ll get through this together as we have everything else. With a lot of help from our friends. I asked her the other day, if our situations were reversed what would she be planning. At first she didn’t want to go there. But I persisted. Then she blurted something out about taking someone on a trip to celebrate a certain occasion. I told her, fuck it, do it. We’ve spent our life putting money away, saving, not turning the heat on till December to save for this golden retirement that we’re not going to share. The problem with bucket lists is that by their inherent nature they end with your death. Why wait till it becomes a bucket list? I should have said fuck it long ago. I want everyone reading this to go start a “fuck it” list. For everything you come up with I’m sure, like me, you’ll come up with ten reasons why they’re totally impractical. Do them anyway. What are you waiting for?
A little over a year ago in August of 2014 we became grandparents. In the tub in the hospital bathroom, while our daughter Lisa labored in the room next door, I accepted the ice bucket challenge. I do not believe in an afterlife. This is the one shot we get (although I am hedging my bets and have asked a good friend to save a seat for me next to Marie Osmond just in case). But we all know where this is headed. The only difference between me this year and the person who took the ice bucket challenge last year is that I can’t hide from it anymore. Sometimes I wish I could. Sometimes I wish I could go back to believing I was going to be the first person to actually beat the system and live forever. Sometimes I wish I could go back to when ALS was just a bunch of initials. The road may go on forever but we do not. What’s on your “fuck it” list?
You can learn a lot about a person by what they hold dear to their heart. It seems we find comfort in the strangest of things at times. Could be a person, a food, a smell, a piece of junk that no one else wants or sometimes a place.
On the way to Mattoon on County Road 1000E there is a farm house. It’s about 40 miles from my front door and is in the middle of nowhere. Humboldt to the west is probably the closest town. Out front by the road is an outhouse. It has shown signs of wear and tear over the years but I am irrationally relieved (no pun intended) to see it still standing year after year on my first long ride south each spring. Seeing it is something I look forward to each time I take that route. That part of the road is pretty torn up with potholes and chunks of blacktop strewn here and there. It’s probably more conducive to 4 wheel drive than a high end road bike with 23 mm tires inflated to 140 psi. But for some reason I need to know that the outhouse is still there. I slow down as I pass, wanting to relish the moment because I know each time could be the last.
Earlier this year at a doctor’s appointment, the neurologist suggested that it might be time to start checking things off my bucket list. There were only 3 things on the list: spending time with family, becoming a Bar Mitzvah, and riding my bike coast-to-coast across the US. I thought next June in 2016 would be a fine time for the last item. But our neurologist smiled politely and said, if it’s really that important to you then you should do it this year. I protested a little saying we had a lot going on this year and I didn’t think I’d have time to train, but he repeated, almost sternly, “If it’s at the top of your list you should move it up.”
At the time I didn’t have an appreciation for the speed the disease is capable of moving. And the progression is not linear. You can’t look at where you were three months ago and attempt to predict where you will be three months hence. ALS doesn’t play that way. Since my early twenties I have gotten up every single morning and done 100 pushups. Now, I often just lie in bed and look at my clothes, dreading the coming battle of putting them on. I know, I can ask for help. But that time will come soon enough, and I’m not ready to go there just yet.
I’ve often wondered whether the degree to which I’m pushing myself physically is making me weaker or stronger. I know that strength I have lost to the disease will never be regained. I know that while I have just lost functionality in my left arm, the disease is everywhere. Every muscle in my body twitches maniacally. They’re called fasciculations, or “fascics” since we’re on a first name basis. On July the 4th, I rode 225 miles up to Michigan to see our daughter Sophia at camp. It was three weeks before I felt completely recovered. It was almost as if I had used up something that I wasn’t going to get back. I began to have doubts about whether I was going to be able to do the “little ride.” It was still two and a half months away. And two and a half months can be an eternity in ALS time. I’ve since limited my training rides to around 100 miles. And after a period of seeming stagnation, I do feel that I have started to get stronger and faster again. How this translates to repeated daily punishment, well, time will tell. I could probably ride longer and faster. But just because I can doesn’t necessarily mean I should. Working within limits has never been my forte.
I have contemplated telling the owner of the house how much their outhouse means to me. I’ve seen him outside a few times. A big burly dude in a cutoff t-shirt. Thick suntanned arms. Generally covered in sweat from weed whacking. But he probably owns a dog. And a gun. But somehow I think if some skinny dude decked out in spandex came waltzing down his driveway and started waxing poetic about his outhouse, well, I honestly can’t see it ending well. So I just ride on by. Occasionally sneaking the odd photo.
I often think back to the moment in the doctor’s office and his suggestion of checking off items from my bucket list. I’m struck by how short the list was. Rae and I didn’t have to discuss anything, we knew what would be on the list. It has been a full life. I think it’s inevitable that everybody suffers a sense of something left undone, unfelt, unexperienced. I think I’d always want to see more but when it comes down to it, between our family, our traveling adventures and working as a midwife I have seen more than I ever dreamed of.
And . . . I have seen the outhouse at the end of the Universe.
There are no rules to how life plays out. We have no control over it. The only thing we have control over is how we face those challenges. We are not so much a product of the challenges placed before us as we are a product of how each of us has faced those challenges.
December 31, 2014.
We had been at the neuroscience clinic undergoing tests for about 3 hours. My wife (also Rae) and I had been trying to get used to the idea that I might have ALS for just a few short weeks. And today we ran out of other things to rule out. After the neurologist left the room a nurse and social worker entered with a book of resources and started talking about such practical issues as local caregiver support groups and renting wheelchairs. I think that was the moment it finally hit Rae. A few tears rolled down her cheeks as the nurse guided us through what was available but she maintained her composure throughout. Sure there were second and third opinions in our future but unfortunately ALS is quite efficient at providing its own second opinion. We walked home in silence that sunny but cold December day, both lost in our own thoughts. Then about halfway home Rae turned to me and said “promise me you’ll never give up.”
Sometimes you need to be careful what you ask for.
I think we diagnosed the disease fairly early in the process. Although who knows how long your body and brain compensate and deny respectively before you can no longer ignore the fact that the buckets of Ibuprofen you’re throwing at it aren’t helping. I’ve heard of people undergoing years of tests and referrals before finally arriving at a diagnosis of ALS. If I had to think about it there were subtle changes in my voice early last summer but I could ignore that. However it was exactly a year ago that I began to have difficulty playing guitar and that I couldn’t ignore. Not that I was ever going to be the next Jimmy Page but it was a form of relaxation for me and playing Yellow Submarine kept my newborn grandson Jack happy. Today I can barely raise my left arm high enough to reach the guitar neck. This shit doesn’t mess around. There is only one finger on my left hand I have any control over. With a superhuman effort of willpower (and extensive tongue chewing) I can extend my middle finger about half way but enough to get the point across. This is one of many ironies of the disease.
I would say, “ALS, this is for you,” but for some strange reason I kind of admire its purity. For all our knowledge of the human body we know next to nothing about this. There is no cure, no treatment, no way to predict how it will affect any given individual. That admiration may change as symptoms progress. But that leads me to one of the purposes of this blog. There isn’t really much out there about the effect of ALS on cycling or visa versa. It was the first thing I checked on when the neurologist said I could have the disease. Well actually, now that I think about it, that was the second thing. The first was to check Wikipedia to see if there was a special type of “Ray Spooner ALS” that was somehow different from that other type of ALS that had been in the news so much of late. But alas, no. The one thing I found about cycling was Doug Schneebeck’s ALS Blog: “Biting Back on the Bike.” This has practically been my bible over the last eight months.
But if I can add to that body of knowledge, it might help someone. I understand that the disease affects everyone differently. I understand as an N of one, my research has limited broader application. But the process is as much a part of the journey as the destination.
First the good news. In February my pulmonary function test results were 122% of predicted value for someone of my height, age, wt etc. Six months later they are 116% of predicted value. All this cycling shit has to be good for something. Was thinking of having a celebratory cigarette.
Now the bad news.
This is what 99% of the road around here looks like. Yet I still managed to fall off my bike yesterday. Hey, I’m talented. What can I say. But holding onto the handlebars is an issue. And don’t get me started on braking. I need to fix these problems before we hit the mountains in California. We have an appointment with a prosthetic maker next week. I’ll let you know how it goes.
Whether we have a diagnosis or not, there is a number to our days. The problems that we are going to face won’t change, but we can change how we face them. Because that’s ultimately who we are. Not a product of the challenges placed before us but a product of how we have faced those challenges.
I have been asked if I’m ready for the ride. I have been putting in miles of course but past experience has taught me that mother nature has a way of nonchalantly unmaking even the most meticulously laid plans. With that in mind it should be noted I have not the first clue what I’m getting us into. Yesterday I rode 100 miles. Here are some stats from that ride. Firstly here is a graphic of the elevation gain over the 6 hours.
The highest altitude attained was 751 feet which was actually the start and finish point in Urbana. The lowest point was 640 feet somewhere between Tuscola and Arcola. This finally settles the argument once and for all that Urbana isn’t in the foothills of Mt. Flat. It actually is the summit of Mt. Flat. I practically felt my ears popping as I rode into town on First Street. The cumulative elevation gain for the entire 100 miles was 390 feet. So am I ready for the ride? Our goal for the first day of the actual ride is to get to Pine Valley. This is the elevation profile of the first 50 miles out of San Diego. That’s 0 to 4,000 feet.
Am I ready for the ride? Sure. Just like someone who has read “What To Expect When You’re Expecting” is ready to have a baby.
Have had 24 hours to reflect on retirement. Over the years I have read many posts by nurses tending to the dying. The most common regret seems to be, at least by men, spending too much time at work. I regret nothing. It’s been an honor and privilege to be part of peoples lives over the years through such an intense time in their lives. And to share that with an amazing group of midwives, nurses, doctors, doulas and the countless support staff whose gift is to somehow make it all work without anyone noticing. It’s been real. I’m sure their are many more adventures and challenges that await us as we move forward. First up is this ride thingy. I don’t think any of us have the first clue what the hell we’re in for. If I am physically able I will complete it. Not because I want to but because I don’t know how not to. Once I set a goal I have no power over anything. My mind sweeps my body and those around me along with it. That’s why Rae is careful about what she chooses to do with me. She learnt long ago. But she has put her reservations aside to join me on this huge adventure. And I hope you will too.