Editor's note: Virginie Bijon's Essay on living with ALS was originally published on the Facts & Arguments page on Nov. 4, 2009. We're very sad to write that Virginie passed away this week. Donations can be made in her memory to the ALS Society of Ontario. She wrote this over the summer at Big Rideau Lake.
At 41, I considered myself an accomplished woman. I had two healthy, smart children. I was happily married to a supportive man. I had an enviable career as a marketing executive. I was superhealthy, exercised regularly with a personal trainer and was always careful to eat what was good for me.
Things started to change in July, 2007, with a weird sensation in my left leg. No pain, just a kind of stiffness that made it difficult to walk and forced me to make a conscious effort to activate my muscles for an activity that should be automatic. I also noticed the muscles in my left thigh twitched uncontrollably.
When time didn't heal my leg, I decided to see a chiropractor. We had several sessions with no result. My walking was getting so awkward, I would follow someone and get into the rhythm of their steps to help pace my own movement.
The turning point was in October while walking down our street. My left ankle gave way but instead of bouncing right back, it collapsed and I fell to the ground in great pain. As it turned out, my ankle was broken. That was when I admitted I needed to see a doctor.
Six weeks later, I went to my first appointment with a neurologist. He confirmed there was something wrong in the way my nerves were sending signals to my muscles, but further tests needed to be done to understand why. I had three MRIs for my brain, neck and spinal cord.
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My next appointment was short. The doctor had prepared himself. "I am not specialized in this area and I have only come across two cases before. I am quite sure you have ALS. It's a neuromuscular disease that affects the nerves that make muscles move. I am very sorry to have to tell you this."
Still shell-shocked by the news, I drove back to my office and Googled ALS. I read that amyotrophic lateral sclerosis, or Lou Gehrig's disease, can be fatal within two to five years of being diagnosed. It is a disease with no cure or treatment that progressively paralyzes sufferers until they can neither breathe nor swallow.
Some people with ALS refer to this moment as their death sentence, and that's how it felt to me. My husband was much more practical. We needed a second medical opinion.
I recovered well from my injury and was determined to walk every step left in me. I fell quite a bit and started using a cane. I now had twitching in every muscle.
Our first visit with a specialist was in February, 2008. The doctor explained that ALS was difficult to diagnose and was the last possible thing when all other illnesses had been ruled out. So I was booked for a day-long series of tests. I counted 17 samples of blood that would test, among other things, for Lyme disease, West Nile virus, rare forms of cancer and so on.
The whole process gave my husband and me hope. What if I "only" had cancer? Hope gave me energy, and during the winter I went for long walks with my husband and my dog, equipped with hiking poles.
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Unfortunately, all the tests came back negative. "Wait and see how your condition evolves," the doctor said. "We'll see you in August."
I had a lot of ALS symptoms but not all of them. The stiffness in my legs and arms caused my difficulty moving, so I was prescribed a potent muscle relaxant.
At work, people kept asking why my ankle wasn't getting better and why my walking was so bad. My medicine made me so drowsy I would literally fall asleep. Most of all, I didn't want to spend my last days of relative mobility working. My final day at work was April 21, 2008.
That summer, I had a full clinical review with a physiotherapist, occupational therapist, speech therapist, breathing specialist and nutritionist. Finally, the doctor saw me to confirm the bad news: I had ALS.
I received three hours of care daily to help me with breakfast, getting bathed and dressed. I was also entitled to a nurse visit every week and a doctor available 24/7. I discovered the devotion of caring people who came forward to help our family, and especially to relieve my husband, who had become my primary caregiver.
I kept track of the progress of my disease in terms of the activities I could no longer do. I dressed by myself for the last time in June. I drove for the last time soon after. I cooked my last meal July 1. I had a few falls, one of which landed me in the hospital needing 12 stitches in my jaw, and the other one at the dentist with two broken front teeth. I lost my ability to wash and feed myself and brush my teeth.
The worst, however, was my mouth. Like most people with ALS, I have swallowing problems and had to adapt my food to my ever-evolving condition. But what became more worrisome was that my speech was getting slurred. It was as if my mouth was forgetting how to form the sounds, as if my tongue and my lips were numb and too slow for the words to come out properly. The ALS clinic gave me a special computer that allows me to write with a mouse and a keyboard displayed on the screen. It takes a long time, but then again, I have time.
It is hard to believe there are still diseases with no cure. I am now 43 and two years into my journey with ALS. I have lost more than 30 pounds out of my original 125 pounds. Bound to a wheelchair and this communication device, I feel in prison in this useless body of mine, and the silence isolates me from those I love. I am scared for this last leg and I pray that it will be short. I have declined all forms of life support, including a breathing machine and feeding tube. I long for the end because my spirit will be free at last.
Virginie Bijon lives in Toronto.
Illustration by Steve Adams.
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