When I was 16, I searched the internet for Friedreich’s ataxia (FA) for the first time. I couldn’t ignore its effects any longer, and I was ready to learn about it.
I assumed the treatment or the cure would be expensive and unpleasant. When I discovered there was no way to stop FA, I was devastated.
Even more devastating was the life expectancy of people with FA, which was in the early 30s.
My 17th birthday was a few months away when I read that. I morbidly assumed that it would be the halfway point of my life, my “over the hill” birthday.
As I write this, my 34th birthday is quickly approaching. I expected to be at the end of my life by now.
In some ways, my life has unfolded just as I had predicted as a pimply teenager. I am reliant on a wheelchair and am much more dependent than I thought I would be.
What I didn’t — couldn’t — understand back then is how adaptable people can be.
When people fight battles, they choose to be either a victim or a survivor. Few people must learn that hard lesson. But as the “philosopher” Bon Jovi once said, “You live for the fight when it’s all that you’ve got.”
The trauma you might be facing may seem overwhelming. I’ve learned to view mine as an adversary instead of an all-encompassing situation.
We are more powerful than we think we are. We can adapt to whatever situation we find ourselves in. We can keep fighting.
Four huge changes have occurred in my life this past year.
Begrudgingly, I finally accepted the help of a patient care assistant (PCA). For the longest time, I thought that using a wheelchair would be awful and debilitating. I expected that having a PCA would be similar. But it turns out that accepting my need for a wheelchair and for PCAs has made me more independent. It’s liberating to have someone help with household chores, which were becoming difficult for me. Accepting help is not a sign of weakness, as I am trying to learn, thanks to my PCA, Shaw.
I’ve also accepted help by getting a service dog, Zeego. As much as I love solitude, I’m unexpectedly relieved to have a constant companion, even if it’s a canine one.
Additionally, although my disability has made it difficult to find work, I have been a full-time employee at BioNews Services, the parent company of Friedreich’s Ataxia News, since September.
Finally, the results of a Phase 2 study of an investigational treatment for FA were published about a month ago. It’s not a potential cure, but if approved, it could become a way to treat FA, which is at the moment untreatable.
Thirty-four doesn’t feel like the end anymore.
Last year, I asked, “Where the heck is Matt?” This year, I have the answer: I’m here. I’m not going anywhere.
I thought I’d be nearing the sunset of my life by now. But maybe not. Maybe, like Tommy and Gina, I’m only halfway there.
Who knows what the future holds? Either way, I don’t think I’m finished yet.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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