Biking Without Pedals: Memories of John and ALS

A man sitting on the beach with a large, black and brown dog.
(CBC, Facebook)

It’s ironic to consider that I work for the provincial government—an organization well known for its love of acronyms—and yet the one acronym that impacted my life the most was one that I was uninformed of: ALS.

When I started working for the government, my co-worker, John, was working with me. When he spoke, it was very slow with a low, almost monotone sound. My first impression was that he must have had a stroke at some point, which can affect one’s speech patterns. It turns out it was a different beast altogether: ALS.

ALS stands for amyotrophic lateral schlerosis. It’s a neurodegenerative disease that erodes the nerves that connect your muscles to your brain. Basically, imagine your body slowly shutting itself down to the point where you can’t walk, eat or speak without mechanical assistance.

John recently passed away from ALS. I knew John for almost 3 years, and in that time went from being my co-worker, to my landlord, to my friend. Despite the challenges that he faced with ALS, he remained upbeat and humorous. ALS may have damaged his body, but it didn’t damper his spirit.

“Sorry, I can’t eat anymore.”

I remember the moment the severity of John’s ALS became apparent to me. I had been living in the basement suite of his house for a few months. I had just finished making a batch of butternut squash soup—it was one of John’s favourites and he made it for everyone at work one time, so I decided to try my hand at making it. I put a container of the soup upstairs in the fridge for him as a gift. However, shortly afterward I saw it had returned to my kitchen table with a note attached to it, reading something like “Sorry, I can’t eat anymore”. I stared at the note for a while, as I began to internalize the concept of not ever being able to eat food for the rest of your life.

From there, I watched as John’s body slowly continued to shut itself down. Liquid nutrients had to be pumped directly into his stomach. Eventually, he could no longer speak, and had to communicate through a Boogie Board tablet. Then he began to lose the use of his fingers, and had difficulty gripping the stylus. In the last months of his life, he used an iPad, though he had difficulty gripping it and typing the letters with accuracy. Vocal communication was now a series of groans and moans. John was one of the first Canadians to be granted the right to physician assisted death and said that he would take that option if communicating became too difficult for him. He never ended up using that option.

The next moment that the reality of ALS hit me is when I came home and saw that John’s bed had been replaced with a hospital bed. At this point, the hum of John’s assisted breathing machine was normal, as were the sounds of John wretching—from which of his assisted living devices, I was never sure. One morning I heard three loud stomps coming from upstairs—our signal if he needed help. I went upstairs and found that he needed help with his machines, as his caregiver was out for a moment. I had to learn on the fly how to work his breathing machine and the machine that sucked excess saliva out of his mouth.

During my first Walk for ALS—back when John could still walk and talk— I tried calling John’s cell phone. When I reached a voicemail, an unfamiliar voice greeted me: John’s. Before ALS. A deep, confident voice that was a far reach from the mechanical intonations of the iPad he would end up using.

Real courage

John was indomitable.

Despite the affects that ALS had on his body, it was clear that he wasn’t going to let it damper his life. He participated in the ALS ice bucket challenge, and always raised funds for the annual Walk for ALS. He was always surrounded by friends and family. He traveled far and wide. He loved shoes.

One time, John wanted to bike down to the Alberta Legislature. He was adamant about going, and so I helped him get his bike out of the garage. He was about to go when he realized that the pedals were gone on the bike, and only small nubs that normally connected the pedals remained. I offered to give him a ride, but he insisted on biking there on his own, so he just started pedaling on a bike with no pedals. A few minutes after he disappeared down the street, I got a text from him that just said he needed help and was at the gas station up the street. I rushed out the door and ran to him. He was standing by the air pump with his bike, and he asked if I could pump the air into his tires since he didn’t have the strength to do it anymore. I did and, of course, he carried on his way.

It’s one of the regrets of my life that I didn’t sit down and talk more with John. Every time I did, there was something witty or memorable he said that would stick with me. John was well-traveled. When I was cleaning out the basement storage room, I came across a box that was filled with his old passports and memories from his various globe-trotting adventures. I can’t name all the places he’d been, but it was far more than many people dream of going. We talked about religion, life, death, the world and God. He welcomed me, my cat, my friends and eventually my wife into his home without a second thought.

One of the last conversations I had with John was about his diagnosis. The iPad he typed on narrated his thoughts. He said that when he was first diagnosed, there was a lot of tears. But eventually he realized that you can either give up or try and make the most of it. In the face of something as foreboding as ALS, John chose to face it with a smile. That’s one thing the disease never took from him: his ability to smile. I never once saw him get angry, or become despondent over his situation. He never complained about what he’d lost, or yearned over things he’d regretted in life. He was kind and gentle, and was always able to see the humour in things, no matter how bleak they may have seemed. He took things as they came, in the moment. John recently passed away in a hospital, surrounded by his friends and family, following complications with asphyxia.

John reminds me of the famous words of To Kill A Mockingbird’s Atticus Finch: “I wanted to you to see what real courage is … It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”

 

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5 thoughts on “Biking Without Pedals: Memories of John and ALS

  1. Candace Toews

    Aaron, what a lovely post. I especially loved the passage where there were ‘three loud stomps’ – indeed the medium was an urgent message. I loved the story about some guy who broke into the house and stole a watch an was going after something else when he was discovered by John. As his voice had almost given up on him he chased this would-be thief out the door “yelling” as much as he could. When he found that ineffective his legs were not and he delivered a hard kick to the guy’s behind – satisfaction. He is missed

  2. Tammy Forbes

    Thank you for sharing this Aaron. I was a colleague of johns at the PAB. We used to talk about our dogs – he was a brilliant man and always there to help if I had a question or an issue work through. My aunt had ALS – her diagnosis was in the early 90s. Way before any advocacy or awareness or societies.

    thank you again for your words.

  3. Aaron — This posting on John and ALS touched me deeply. Thank you.

    I believe we met before I retired when we were both with Infrastructure — i was in Communications at the time.

  4. Abdul Adheem

    Assalamu alaikum wa ramatullahi wa barakatuh my mother a friend of Mr. Tuckwells told me about your blog. Inshaallah may I contact you privately sometime?

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