In an instant, my plans and dreams vanished; I was left wandering through life with no set future, and it was scary.
I can remember parts of that day in ’97: hopping onto a swiveling chair at my dad’s workplace, logging on AOL before the bulbous computer monitor and screaming tower. (Back in those days, screeching and slowness were expected of computers; kids today don’t know how rough we had it back then.) Putting my almost empty Coke can on the desk, I read the screen as I ran my fingers through my dark brown hair, neatly styled in an 11-year-old’s bowl cut. (My mom had convinced me that it looked good. It didn’t.)
I finished the article in front of me and just stared, at nothing in particular. I wasn’t then, and am not now, very good at physically expressing my emotions. So, I just tuned out in that moment, losing my footing in the present and worrying about the future instead.
Reading for the first time about Friedreich’s ataxia, the rare disorder I was diagnosed with, was awful, even though the scariest part about it, the word “progressive,” didn’t mean much to me at the time. The article said that most people with FA require the use of a wheelchair by the end of their teenage years, and that was a gut-punch to my plans for my life. (Or as much of a future plan as a preteen can have.)
Most visitors to this site have some familiarity with FA: its gradualness, its slow erosion of one’s life and capability. But even when knowing about FA, its stark reality is hard to prepare for.
I know I wasn’t prepared.
And if my story of FA had ended at that moment, if my life had ended there as my 11-year-old self believed and expected it would — the story would be a tragedy.
But it didn’t. My story still goes on, some 20 years later. And whether my story is a tragedy is for me to decide.
When I first learned about the effects of FA, I focused on the hugeness of the disorder; the finality of the diagnosis. This is a natural reaction. But as I endured FA (less as an inspiring hero, and more as a whining moron), I discovered a subtle but powerful secret: In life, the small successes, the little victories, are what matter.
I’ve been through deep bouts of depression, where the overwhelming sense of dread threatened to crush me. Even in those moments, I didn’t — couldn’t — escape my circumstances. Despite it all, I kept on surviving.
To be honest, I can’t say that all of those feelings of giving up are entirely in the past. They’re still with me at times, threatening to suffocate me with a sense of futility. FA is still a part of me, still progressively making me ever more dependent.
But I refuse to let my story be a tragedy. Instead of just surviving, I’ll try living.
Even though living with a disability is difficult; even though I may face the deaths of friends and family and those in the FA community; even though life has its shares of difficulties, broken hearts, and pain …
I’ll strive to overcome, to live. I will start by focusing on the little victories, the easy-to-overlook examples of things that give me some small joy. I hope that these will be enough.
Even so, I know that I will fail sometimes. I won’t see the small joys, the little victories, in front of me.
But I will try to be authentic. In success and in failing. Whether being a hero or being a moron. Both when it’s boring, and when it’s scary.
This is my promise to you, reader.
And maybe that in itself is a little victory.
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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