Unleashed Opinion

Choosing Hope Over Helplessness

Life under the threat of a devastating disease is all about shrugging off the fear.

By Mark Hopkins

“Dad has ALS.”

It was July 2006, early on a Monday morning. I lived in my parents’ Calgary bungalow then, and I’d just returned from a week-long trip to Vancouver, where I’d slept in a sleazy hostel and discovered vegetarianism. My dad had left for work when my mom came in to wake me. She sat on the edge of my bed, and made it to the last syllable before her voice broke.

I first encountered Amyotrophic Lateral Sclerosis in the early-’90s when my dad tackled our family tree. I had a morbid pre-teen fascination with the dangling branches, and one of the most recent was my Great-Uncle Fred, who died of ALS a few years before I was born. At the time, it was just another mysterious malady, the realm of Lou Gehrig and Stephen Hawking, and I didn’t give it much thought.

Then, in 1999, my father’s brother was diagnosed.

ALS is caused by the degeneration of motor neurons, the nerve cells that control voluntary muscle movement. As they degenerate, the muscles they control cease to function and begin to atrophy. The disease is progressive; the average life expectancy of an ALS patient is three years after diagnosis. Most die from respiratory failure.

That’s how one explains ALS, but my reality with the disease is much different. Uncle Bob was vibrant, active and big. He lifted me up in rib-crushing bear hugs, leapt off cliff-sides into the lake. In my life, ALS is Uncle Bob in a wheelchair, unable to lift his bony legs, my aunt pounding on his chest to help him dislodge a cough. He died in 2001.

“Dad has ALS.” Mom didn’t need to say anything else. I started sobbing, and so did she. I spent the day on Google, obsessively checking facts that I already knew. When my dad got home, we cried and hugged some more. And then I went to the bar.

In terms of coping mechanisms, I knew that alcohol was a dangerous cliché. I didn’t care. I started with a pitcher and kept ’em coming until I was passed out on the bench outside. I somehow managed to call some friends for a ride. In the car, I broke down. “My dad has ALS,” I choked, “and I have a 50 percent chance of getting it, too.”

See, that’s the deal. In about 95 percent of ALS cases, the cause is unknown. The remaining five percent is known as FALS—familial ALS—caused by a dominant genetic mutation. I did pretty well in high school biology—and when three people are diagnosed in a family of six, the math isn’t hard.

My next 11 months were dominated by helplessness. My dad slowed down, lost weight, went on short-term, then long-term disability from work. Eventually, he was restricted to the living room recliner. I moved into a condo, started seeing a grief counsellor, and every time I came home, he was a little bit smaller.

He died on June 3, 2007.

There’s no point in playing the probability game. By the time it’s my turn for the ALS coin-toss, there could be a cure, or maybe I’ll have already died in a freak trapeze accident. Logic aside, though, every time I wake up with a stiff leg, every time I stumble unexpectedly, I have a tremor of fear. In my family, a limp is a potential death sentence.

My daily challenge is to shrug off that tremor. Fear breeds helplessness, and I am done with helplessness.

One week after my dad died, I ran in Betty’s Run for ALS. It was an eight-kilometre run. I hadn’t run farther than two blocks since high school. But somehow, as I wheezed up that final hill toward a crowd of passionate strangers, it seemed like the perfect thing to do. Here was a coping mechanism free of cliché, and full of power.

At Doug Hopkins’ memorial service, these were the final words in my eulogy:

“My father died in a living room. He chose his own end, decided that he didn’t want his final days to be in the clinical sterility of a hospital, but in his home, with his family, in the community that he helped forge. It’s that community that will keep his stories alive.”

I have a 50 percent chance of being diagnosed with ALS, and while that is terrifying, it’s also an amazing opportunity. If my genes do carry that dreaded, elusive mutation, we’ve got 30-odd years to solve the mystery. If a sample of my blood can bring research even a micron closer to treatment or a cure, then giddy-up. U

Mark Hopkins, BA’05, is a regular contributor to Unleashed Opinion.