10 years with ALS: Carlos’ Story


I was 34 when I was first diagnosed with ALS 10 years ago, I was sure that it was a death sentence and my life, as I knew it was over. It’s been hard losing my physical self to the disease. It’s like a fresh flower losing its petals, slowly over time and piece by piece laying helpless on the floor. Losing things like making love, salsa dancing, serving my customers at my little shop in Ste. Rose and most of all…eating. Man, I loved eating! There was nothing better than spending 3 or 4 hours around the table with fabulous food, friends and a couple bottles of wine.

Losing one’s physical self has its blessings though; there is a spiritual awakening inside of you, a kind of inner peace that in a word is…breathtaking. You appreciate and are moved by the most trivial things, but the truth is nothing is trivial when you’re waiting to die. Feeling sunlight on my face and listening to the wind rustling through the tree leaves or the sound of a little child laughing while playing is a sound of pure innocence and bliss. So while it’s not been easy living with ALS for the past 10 years, my point, I guess is that I have been living and although it hasn’t been the life that I wanted, it’s the life that I have and I am glad to have it.

People keep saying that I’m so brave and inspirational and ask me how I do it? My answer is quite simple really…I just don’t want to die so I do everything in my power not to. I also set short-term goals for myself. I’m a big fan of everything comic book related so I set the goal of watching The Avengers movie back in 2012. My new goal is to watch The Avengers 2 and Batman vs. Superman in 2015.

So live every day like it’s your last because it might well be, but never give in. I’ve had my share of days when I wanted to put an end to my life, but these dark days pass, I swear it. Winston Churchill once said, “If you’re going through hell, keep going.” If I had given into those dark moments, I wouldn’t have been able to reconnect with my stepdaughter, Sabrina and she wouldn’t be coming to the Walk for ALS for the first time. It will be the first time that I see her beautiful face in 9 years! Worth all the dark days I’ve ever faced for this one miracle.

In closing I would like to quote from a song from the Rocky IV movie soundtrack, it’s a quote that I’ve tried to live my life by­. In a warrior’s heart there’s no surrender. Though his body yells stop! His spirit cries…NEVER!