In My Words: Mark Combot

Welcome to My ALS Journey 
 
They say ALS is a journey… so welcome to mine. 
 
When I was first diagnosed with Amyotrophic Lateral Sclerosis (ALS), I was devastated. Everything changes in a moment—your plans, your future, even the way you look at time. Suddenly, life becomes about more than just living. It becomes about holding on, about family, and about making memories while you still can. 
 
Because one day, you may not be able to make them the same way again. 
 
This is my journey. 
 
This year, I became a graduate of the Canadian ALS Learning Institute (CALI) with ALS Canada. I’m incredibly honored to step into advocacy—to use my voice while I still have it, to push for change, and to be part of something bigger than myself. 
 
ALS may be taking things from me. My arms may no longer hug the way they used to. My legs may one day stop carrying me forward. But here’s what it hasn’t taken: 
 
I still wake up every morning. 
I still smile. 
I still laugh. 
I still drink my coffee. 
I still breathe in the fresh air—just like anyone else. 
 
And that matters. 
 
So now, I have a mission. 
 
To raise awareness. 
To make noise for a disease that too many people don’t understand. 
To fight for recognition, for funding, for urgency. 
 
Because right now, ALS is underfunded. It’s under-recognized. And that needs to change. 
 
I want ALS to earn its place in the spotlight—not for attention, but for action. 
I want it to become something we talk about in the past tense. 
Something we used to fear. 
Something we used to fight. 
 
And even when I’m gone… I want to know I helped push that forward. 
 
Because until my laugh is gone… 
I’m still here. 
And I’m still fighting. 

“In My Words” is an ALS Canada story series illustrating life impacted by ALS through first-person storytelling. Whether that’s through the written word, audio, art, music, etc., community members will share their experience in their own way.