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