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.