Even With a Rare Disease, My Ending Remains Unwritten

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by Matthew Lafleur |

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When I was younger, I believed in destiny wholeheartedly — that my life unfolded with very little input from me. I was just a passenger on the journey of my life, so no matter what I did, I still barreled toward a future written long ago.

My belief in destiny was ultimately an excuse for me to be lazy. After all, no matter what path I took (or didn’t take), my ending would remain the same.

When I was diagnosed with Friedreich’s ataxia (FA) as a child, that belief was starting to crumble. Whatever “Friedreich’s ataxia” was, it was interfering with the kid-athlete I wanted to be. I had to be healed of it soon, so it wouldn’t keep me from my destiny.

When I was about 15, all I knew about my disorder was that it was getting harder for me to walk without stumbling. So to find out how to get rid of it, I typed its foreign-sounding name into a search engine on a bulky PC from the late ’90s. I clicked on the first article that came up. This was the first I’d ever read about FA.

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Though most of the scientific details went over my 15-year-old head, I skimmed to find what I was looking for: the cure. Whether it was a medicine I’d have to take for the rest of my life or an extensive surgery to get rid of FA, I was eager for it. I was tired of being so uncoordinated. After all, I had a predetermined destination to get to; I’d better start running.

But the article didn’t provide any hope for my future.

I should have been most shocked by the life expectancy for Friedreich’s ataxia patients at the time: 34 years. I reflected on that prognosis in the column I wrote for my 34th birthday. Even though I’ve beaten those odds, and life expectancy for Friedreich’s ataxia varies depending on the person and the time of disease onset, the sobering reality is that many patients die due to complications of FA in childhood or early adulthood.

Even though being alive at 36 is a victory, it’s a small one. My happiness at surviving this long is forever shadowed by survivor’s guilt.

Like for most 15-year-olds, the age of 34 seemed very distant to me, so dying at that “old” age didn’t matter much. Setting aside the life expectancy for Friedreich’s ataxia, the final line of the article seemed more of a death sentence: “By the end of their teenage years, people with Friedreich’s ataxia require the full-time use of a wheelchair.”

Reading these words was absolutely devastating. I’d assumed that taking away the mystery of my unknown diagnosis would be a relief, and I’d learn how to get rid of the disease. I didn’t even consider that the disorder had no specific treatment or cure. (To this day, there still is no specific treatment for FA, but there are general treatments for its symptoms.)

In the same way that the article ended, I assumed there was no future for me once I required a wheelchair. Many people, like teenage me, can’t imagine a future in which we lose some of our main physical abilities. I feared losing my ability to walk more than dying.

I like to believe that my thinking has matured since I was 15. I now believe that our self-worth is not related to our physical capabilities, but I still need to constantly remind myself: You are more valuable than what you can or can’t do.

When I was young, I believed completely that life would go on without much input or effort from me, and I’d still end up where I was supposed to. I didn’t realize how easy it would be to give up on myself or how difficult and worthwhile it would be to continue pressing on.

Even though the first article I ever read about Friedreich’s ataxia ended after patients lose the ability to walk at the end of their teenage years, my life did not end at that point.

I’m still here.

And even though life is incredibly frustrating and painful at times, I’ve found that it’s still worth it.

If you, reader, face an unknown future and you have no idea how you’ll survive it, congratulations. You’re alive.

I’m not sure if we are on a fixed path to destiny or if we’re just making the best of our haphazard circumstances. Maybe I’ve replaced heavenly hands guiding my destiny with a diagnosis. Either way, it’s not an excuse for me to stop trying to be the best I can in the moment. Whether I am destined to stand from my wheelchair or to be another victim of FA, I choose to believe my destiny is unwritten.

No matter if we believe we are heading toward a destiny, our journey isn’t over.

I’m still here. So are you. Let’s make that matter.

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. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


Tiffany Sippel avatar

Tiffany Sippel

I always enjoy reading articles from Matthew. Someday I hope to read a BOOK by Matthew. Wouldn't that be a great read?


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