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.
Oh and one last thing. If you’re inclined to make a charitable donation, the following two organizations are close to my heart.
There are many ways to measure the length of a journey. Duration in time or distance traveled are but two. Yet distance measured on the map is somehow just not the same as distance measured on the ground.
I do not have words to adequately describe what it’s like being in my body at this point. All the things I most dreaded when initially diagnosed have one by one come into being and have simply been incorporated into our daily lives without fuss or fanfare. Yet the love and tenderness I’m shown on a daily basis by family, friends and community (irreverent as it can be at times) make it all relatively easy to bear. And that is a gift for which I also do not have words to adequately express thanks. That being said I’m going to give it my best shot.
August 12, 2001. Mt. Fuji, Japan. Bike riding isn’t the only activity I’ve undertaken in order to raise money for a good cause. In 2001, a group of ten of us set out to climb Mount Fuji to raise money for Planned Parenthood. Our goal was to see the sunrise from the summit of the mountain so we began hiking the afternoon of the day before. There was a steady drizzle and we were surrounded by clouds so there was a possibility that for all our efforts we might not see anything at all but we were only in Japan for five days and this was our only shot. Despite the lack of visibility there was never any question about the path because hordes of people, young, old and entire families were also making the trek. But as we got higher the crowds began to thin out. There were lodges at regular intervals along the way offering everything from food and souvenirs to canisters of supplemental oxygen. At one point I recall passing a middle aged man sitting by the side of the path breathing deeply from an oxygen mask held in one hand while holding a cigarette in the other. I thought, you know, I have a nursing supervisor who would probably have a thing or two to say about that.
July 6th, 2016. Urbana, Illinois. I stood in the hall of our home at the foot of the staircase. Waiting for the reassuring feeling of the stabilizing hands of Rae or one of the kids on either side of my torso before setting out. This isn’t a trip I would attempt solo anymore. Once I have the support of someone behind me I generally stare at my feet for a while as I gather my strength. No one ever rushes me. When ready I lift my right foot onto the first stair and begin. We have lived in this house since 1998. Yet prior to this year, had you asked me how many stairs there are in it I could not have told you. There are fifteen. Fifteen stairs that separate me from the bathroom and our bedroom. The first seven stairs navigate a 180 degree turn and as such have a wider surface area. They also pass the window that looks out onto the patio. If I was going to take a break for supplemental oxygen this is where it would be.
As the light began to fade we stopped at one of the mountain lodges to eat and dry out. I’m not sure if it was the actual heaviness of the rain or the material the roof was made of, but knowing I had to go back out into it, this was one of the few times in life that I didn’t find the thunderous sound of rain soothing. At around 2 a.m. we headed back out onto the trail. Thankfully all the clouds were now below us and above there was nothing but a clear starlit sky. Mt. Fuji is a holy mountain and has been the object of pilgrimages for centuries. It is 12,389 ft. high and as we approached the summit my breathing was becoming more labored. It was still dark when we reached the rim of the mountain where, much to my surprise, we were greeted by a ghostly apparition. There, standing alone on the black volcanic rock, was a vending machine. It shimmered in the darkness, silhouetted against the black moonless sky. It reminded me of the monolith in the movie “2001.” I approached it with caution. I mean, where the hell was this thing getting its power? But any apprehension I may have had soon dissipated when I saw that the vending machine dispensed cans of hot coffee. I rummaged through my pockets and somehow came up with the right change. Invigorated by a warm caffeinated beverage all altitude-related fatigue suddenly vanished and we circled the entire rim of the mountain before the sun started to rise.
The last section of the staircase is a straight shot to the upstairs landing. I used to count off the stairs from 1 to 15 as I climbed, but of late I’ve taken to starting back at 1 from the halfway point. Counting from 1 to 7, followed by 1 to 8 somehow seems so much more manageable than counting all the way to 15 in one shot. Once at the top I regroup as I catch my breath and quietly bask in the glow of my small victory. I’m having an increasingly hard time holding my head up.I actually have to put thought into it. It isn’t something that just happens anymore. And my neck muscles fatigue quickly. The best feeling is to rest my head on someone’s sternum where it is thankfully weightless. This has become my regrouping position. As an aside it’s also how I’ve learned to identify all my friends and family by their toes. Once I’ve made it to the top of the staircase I’ll assume this position to gather my thoughts. There are only two reasons I would have made this journey. To use the bathroom or to lie down. But even if it was just to use the bathroom it’s impossible not to feel the bed calling. A ghostly apparition in my mind’s eye. Pulling me in. I mean, I made it all the way up the stairs in one piece. Doesn’t that deserve a nap? We could easily set up a commode anywhere downstairs in the house, alleviating the need to go upstairs. But our bedroom, well, our bedroom is our bedroom. More than any other thing in the house the comfort of our own bed is what I would think of most when we were away. It’s really the only reason I still persist with the stairs. If my legs were to outlast my lungs I’d be deliriously happy. But it’s a tight race.
About a month ago we embarked upon the final leg of our journey and entered the realm of hospice care. Even though I’m a healthcare professional I have always thought of hospice as something of a last resort. But hospice is simply a philosophy of care that focuses on the quality of your life instead of on continuing with treatment to prolong it. There you go, “quality of life.” I said it. That phrase I so hated when the neurologist used it at our first visit. When you’re initially diagnosed with ALS people send you all kinds of info about the latest research, drug trials and therapies. I don’t think you ever really know how you’re going to face any given situation until you’re actually confronted with it. Illness is no exception. It’s an extremely personal choice involving many factors but since the very beginning we decided we were going to spend our time spending our time rather than pursuing more time. I guess I just had it in my mind that the less life prolonging measures I took the more control I’d have at the end. And above all else . . . I’m a control freak. In order to qualify for hospice care you need to be medically certified as having less than six months to live. But philosophically we’ve been in hospice care since day one.
When you become a parent there is a love that develops between you and your child. It’s not a love that you’ve experienced before. I mean, we all have been in love. But this is different. It’s a love of a higher order. A love that you really wouldn’t have believed yourself capable of prior to actually experiencing it. Then if you choose to have another child there comes this nagging guilt. You are the center of your child’s universe and you’re about to bring another child into the world. You ask yourself how could you possibly love another child as much as you love the one you have? But just as before becoming a parent you could not have believed yourself capable of such a love, when you have another child that love divides with equal intensity. It’s a bottomless well. At least it is until they become teenagers.
Just as the milestone of becoming a parent magnifies your emotions, let me tell you, staring down your own mortality sure as shit does too. I don’t know why I’m surprised by the way people are supporting our family and caring for me. I think it’s more a feeling of unworthiness than anything else. I’m not going to say that it’s a different level of love I’m being shown or am feeling towards others. I suspect it’s always been there but I’ve just been in too much of a rush to notice. Each day is measurably harder and there have been nights I’ve laid down unsure if I would wake. It’s hard not to feel that the end is close. This afternoon I was napping. At least I think I was. And I had the weirdest feeling of being apart from myself. Not floating above or anything like that, just not being totally within myself. My physical and cognitive selves were slightly offset. Like I was testing the waters perhaps. Hard to describe really. I was somewhat surprised to open my eyes and see that I was still in my bedroom. If I could move my arms I would have pinched myself. But I was reassured by the sound of Rae, Sophia and her partner Yoni watching a movie behind me. The whole experience couldn’t have lasted more than a few seconds. At least I don’t think it did. Of course it could also have just been part of a natural dream cycle. Can’t really say for sure. I’m new at this.
When I stopped delivering babies one of my fellow midwives wanted to throw a roast (the honorary type not the edible type) to–in her words–“mark the end of an era.” Initially I declined but later changed my mind. I changed my mind because around the same time I attended the funeral of a community member. As I listened to the tender stories and anecdotes people shared I couldn’t help but wonder if they had shared those feelings with the person before he died. I don’t know the answer but guessed probably not. I mean it just isn’t something we generally do outside of our immediate family and friends. And even then not enough. There is not adequate space here for me to thank everyone around me for their love, friendship, bravery, compassion and saliva removal. And even if I tried I would no doubt forget someone. Last July I ended my Bar Mitzvah speech with a blessing. I would like to do the same here. In lieu of thank yous I’d like to offer an ancient priestly benediction to friends and family and the countless others who have helped us on our journey.
May the Lord’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
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
The night comes in many forms and I both dread and look forward to it. I dread it because if I’m going to have breathing difficulties the night is when it will usually happen. But at the same time it’s my favourite time of day because of how comforting I find being tucked in. It’s probably been close to four and a half decades since anyone has tucked me in at night. But every night Rae will lay me down while supporting my head and neck and arranges me on my right side around a body pillow. Left knee and arm above the pillow, right knee and arm below. Shoulders pulled back to maximize chest expansion and head moved slightly forward so that my ear is flat. Then she’ll tuck the blankets around me. I must have done this a thousand times as a midwife for women in labor but it wasn’t something I imagined that I might enjoy myself until Rae had to start doing it for me. It’s such a simple thing and only takes a few seconds but I think being tucked in is the embodiment of being cared for.
Of course Jack learned this long ago. We have a small blanket that he calls his “nye nye” blanket. Every so often he will lay down on the couch with the blanket and say “nye nye.” Rae will say “does Jack want to take a nap?” And tucks him in. He will lay there for a short time and then get back up. You can tell from the glint in his eyes that he has no intention of taking a nap for approximately the next six months but then he will lay back down again saying “nye nye.” Rae being the eternal optimist will again tuck him back in. And around the game goes. The sole purpose of which just seems to be to see how many times Jack can get Rae to tuck him in. He seems to have life figured out.My gait is becoming ever more uneven. It feels like my left leg is about two inches shorter than the right. I’m unclear on why muscle atrophy manifests itself in this way. If I had any upper body strength I’d be using a walker or at the very least a cane. It’s about 0.8 miles to the coffee shop and that is the furthest I’ve walked in a long time. When people go for walks I have taken to accompanying them on the trike. Pedalling slowly along the road beside them. The trike has become my self propelled wheelchair. If I could ride it around the house I would. It’s certainly a lot more comfortable than any wheelchair I’ve ever ridden in. And I don’t have to suffer the indignity of listening to someone huffing and puffing in my ear when going uphill.I have ridden my two wheeler through just about every landscape. Through desert and through ice. Through mountains and flatlands. Through endless snarled city traffic and through towns so remote that if two vehicles come to a stop sign at the same time no one is quite sure what to do. I’ve dodged cars, bikes, people, farm equipment, rickshaws, semitrailers, snakes, elephants, camels, dogs, moose and herds of sheep (although not all in the same day). But the boundaries of my world are contracting. There are very few places that I am both physically and psychologically at ease but on the trike is one of them. When I sit down it’s as if I melt into the seat. I can propel myself with a measure of grace that is sadly missing on two legs. I rode the trike thirty miles the other day which nourished my soul no end. Once beyond the outskirts of town I’m free. It’s just me and the corn. On the way out of town I even overtook another cyclist. I wanted to get off the trike and go back and give them a hug.Fairly early on after I was diagnosed a friend texted and advised that I not look up pictures on line of people with ALS. It was of course too late by then. I’ve always been fascinated by the human body and have used my own body as a lab to push its limits. I see its decline with equal, if not slightly more morbid, fascination. I no longer have to look on the internet for pictures of what ALS can do, I just have to look in the mirror. If I could I would be taking photos out the wahzoo but I can’t hold a camera anymore. Periodically I will ask Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it I was contacted by someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine is a professional photographer and was wondering if I would be willing to let her photographically document moments of our everyday life as our journey unfolds through to the very end and beyond. Ultimately embarking on a photographic process of documenting my own mortality. Hmmmm, let me think about it for a while I didn’t say. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when Jack sits in her lap with a book. But it’s hard to explain to a 21 month old that the woman with the camera isn’t really there.
One night a couple of weeks ago I woke up drenched in sweat and gasping for air. I started freaking out which I’m sure only made matters worse. It felt like I was breathing through a pinhole. I stood up, paced, sat down, stood up, paced some more. I recall making weird grunting noises trying to force air out in the hope that it would make my airway bigger. This had never happened before and neither of us knew what to do. Rae said the episode only lasted about a half an hour but it felt like an eternity to me. I think what scared me the most was the thought that this feeling of air hunger is what it was going to be like at the end. My first taste of what lay ahead. Eventually Rae convinced me to get back in bed and lowered my head back down to the pillow. She lay in front of me with her forehead against mine and softly coached me in breathing. Holding my hand with one hand while stroking my head with the other. Slowly she got me to slow my breathing down. The last thing I recall thinking before drifting off to sleep was that when my time comes this is how I want to goI think my favorite sound is that of rain. Rain on a tent, rain on a car roof, rain on the trees, rain coming and going in the background on “Riders On The Storm.” A deluge or a drizzle. I like rain, you get the idea. The day after my breathing scare we went to the palliative care clinic and it was suggested I start using BiPAP (Bilevel positive airway pressure) at night. It’s a form of non-invasive mechanical pressure support ventilation that augments your own respiratory cycle. I wear a mask and somehow it mimics my breathing pattern and when I inhale it blows air into my lungs. I’ve tried faking it out by holding my breath and it will patiently wait 14 seconds or so before saying OK Ray, time to breathe now there’s a good lad. And then it gives me a breath of air. It’s kinda freaky how it knows this and I try not to think about it too much. But the goal of all this is optimising my lungs’ efficiency and reducing the work of breathing. Since I’ve been wearing it I’ve only had one other episode of air hunger so I’m gussing it must be working. The other night I woke up and between the sounds of augmented inhalation I could hear a gentle rain outside the window. I tried to focus on the rain but the sound of the BiPAP kept disrupting my zen. I had to make a choice between optimal breathing or listening to the rain. It wasn’t a hard choice. I woke Rae and asked her to please take the BiPAP mask off.June 21st, 2012. Powderhorn, MN. I got a call at work one day from my brother and sister-in-law, Josh and Luci, up in Minneapolis and was informed that, oh by the way, we’ve entered you in the Powderhorn 24 (a 24 hour bike ride). Thanks, great I said having absolutely no idea what the hell I was getting into. I had two months to train. On the day of the ride at about 1 in the morning a cyclist pulled up beside me introducing himself as Ben and we started chatting. I stayed with Ben for three laps but had to work to keep up. Eventually I thought this is silly, I have another eighteen hours to ride. At this pace I’ll die on the vine so I dropped back. That’s the thing about being a midwife. You learn fairly early on that women go into labor at all hours of the night not just between 9 and 5. So I’m intimate with the measure of time that is 24 hours. I know what it takes to make it through. I spent the rest of the night blindly following any flashing red light I saw through the city streets in the hope it was going where I needed to go. But at a more sustainable pace. As it turned out I won the race that day by three laps. 347 miles in 24 hours. But I believe I won because I’m a midwife, not because I was the best rider.The night comes in many forms. Some of them more welcoming than others. In the past I have spent many a sleepless night staring at the ceiling fan as the clock tower on campus counted off the hours. But I can’t breath laying on my back anymore. I can’t lay on my left because of lack of tissue padding of any sort. So I lay on my right side facing Rae. For every sleep breath she takes the BiPAP gives me three. My respiratory rate is more in sync with the snoring rate of our daughter’s chihuahua that sleeps with us. I try not to think too hard about the implications of how shallow my breathing is becoming. Instead I focus on the business empire I’m going to build when I find a market for excess saliva. The night comes in many forms.
Peace, love and midwives
“She said, I’ll be with you
My shawl wrapped around you
My hand on your head when you go
And the night came on
It was very calm
I wanted the night to go on and on
But she said, Go back to the World.”
–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
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