Little Victories Really Matter with FA

Editor’s note: Please be advised that the topic of suicide is addressed in this column. Resources for help are listed at the end of the column.

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Despite all of the challenges in my way, I choose to fight, to endure. I hope you do, too.

That statement may sound tough and confident, but that’s not how I’d describe myself. I learned the importance of endurance over time, often kicking and screaming because I didn’t want to.

I am thinking of endurance lately because of an article circulating on social media within the Friedreich’s ataxia community. Although it is from 2017, the report is jarring: A 19-year-old man took his own life after he was confronted with a diagnosis of FA.

The symptom that haunted him most was that he would one day be confined to a wheelchair.

Maybe the reason that hit me so hard is that I can see where he’s coming from. When I first learned of Friedreich’s ataxia — that there was no cure or treatment for it and that by the end of my teenage years I’d need to use a wheelchair — I wanted to give up. I couldn’t see myself living a happy life of progressive dependency. The prognosis of FA’s future complications, especially wheelchair confinement, seemed to ruin any plans for my future.

While I never acted on it, my ideation was suicidal. I can see an alternate future in which the man in Manchester is … me.

That is terrifying.

I am thankful that I never put my thoughts into action. I’ve discovered something I never considered before: Human resiliency is unbelievable.

At one time, I believed that my life was not worth living if I lost the ability to walk. When I gave in to using a wheelchair, I expected the worst. What I found was that my resiliency kicked in. Even though I was in the worst situation I could imagine, I was doing OK.

My resiliency hasn’t stopped surprising me. More than doing OK, I am happy with where my life has brought me. I’ve had more unbelievable memories, encounters, laughs, friendships, and travels than my teenage self could have imagined.

And the same could be true for you, reader.

I will not stop going forward. Whether I run, clumsily walk, or roll, I refuse to be complacent. I choose to be resilient, to not give in to fears of my future.

Join me.

In this column, “Little Victories,” I delve into real struggles for me while living with the slow progression of FA. I write about my frustration at my increasing disability and even admitted my constant awareness of the creeping approach of death. Those subjects are admittedly dark — darker than most writings, especially for a column that hopes to promote encouragement.

Alongside my darker ones, I hope particular posts shine through, like the one about the value of my recumbent trike or the importance of a consistent friend.

The lessons I continue to learn are the value of authenticity and the incredible power of human resiliency.

When combatting your darkness, know that you are not alone. Whether you seek an outlet like journaling or exercising, an understanding friend, or a licensed professional, may you never lose sight of your capacity to endure — even thrive.

Only in doing so when things slow down can we notice and celebrate the little victories in our life.

If you struggle with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (1-800-273-8255, available 24/7) or Samaritans in the U.K.

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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.