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

Ray

Oh and one last thing. If you’re inclined to make a charitable donation, the following two organizations are close to my heart.

Follow this link for the Champaign-Urbana Jewish Federation

and this link for the Muscular Dystrophy Association.

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.

And let us say amen

Peace, love and midwives

Ray

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.

Peace, love and midwives

Ray

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

Ray

“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.”

–The Night Comes On, Leonard Cohen

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.

All drink the fourth cup.

Peace, love and midwives

Ray

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.

Peace, love and midwives

Ray

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.

Peace, love and midwives

Ray

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?”

Peace, love and midwives

Ray

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

Peace, love and midwives

Ray

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:

Ray

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

Ray

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.

Peace, love and midwives

Ray