When I was first diagnosed with ALS, I was completely defeated. I felt extremely depressed, isolated, and lost. I wanted to stay home. I didn't want to talk to anyone or be around anyone. This diagnosis stole all my dreams I had been working toward. Dreams my wife and I had been building over many years. We had big plans.
I worked more than full-time for many years as a medical laboratory technologist, and my wife worked just as much, all in the name of those big plans. Life was good. Really, really good, and it seemed to only be getting better.
Before ALS, I was very active and deeply engaged in the things I loved. Hiking, dancing, biking, traveling, playing video games, making jewelry, and playing guitar. But with ALS, everything became a race against time. A countdown to when I would no longer be able to do the things that once brought me so much joy.
The ALS Society of Alberta helped make that time matter. Through their equipment loan program, I was able to borrow mobility supports that helped me stay independent and travel further than I ever thought possible. Because of that support, I’ve gone on an Alaskan cruise with my mom and my wife, taken multiple trips to Mexico with friends, toured wineries in Kelowna, visited Waterton National Park for the first time, and returned to my favourite places like Banff and the Shuswap, many times over the past year.
And one of the biggest moments of all was being pushed up a mountain in a wheelchair by my wife and best friend to see the Grand Prismatic Spring viewpoint in Yellowstone National Park. A bucket list item I’ve dreamed of that has been missing a check for over a decade!
None of it would have happened without my wife, Philomena, for whom I am deeply grateful. She has selflessly put her own life on pause to take care of me, both physically and mentally. Without her, I would have already given up.
I’m also grateful to my coworkers and friends, who were gentle and supportive in the long lead-up to my official diagnosis. They returned as Team Oh My Globulins! to Betty’s Run for ALS this year.
These days, I focus on meaningful moments. Going out for nice meals, playing video games, and most importantly, spending real quality time with my wife. I used to take that time for granted, thinking that family time was a thing reserved for weekends and vacation days, and maybe an hour or two after work. I assumed we’d always have it “later”. But ALS has taught me that later is never guaranteed. And that time with the people you love is the most valuable thing there is.
I have no regrets about the life I lived before ALS. But I’m grateful that it taught me how so much beauty and connection can still exist, even now. Especially now.