The curious case of the future FA supposedly killed
As I examined the evidence, something unexpected emerged
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Growing up, Halloween was always one of my favorite holidays. My birthday falls a couple of weeks after the holiday, so I always combined the two. For years, I threw Halloween-themed birthday parties, complete with costumes, games, and, most importantly, cookie cake.
Each year, we gathered in a local restaurant’s game room, where my friends arrived in their Halloween costumes. I loved seeing who everyone had decided to be. I remember dressing as a vampire one year and Darth Vader another.
We typically played musical chairs and other games. My favorite part, though, was the cookie cake I got every year, decorated with ghosts, jack-o’-lanterns, and bats.
I love the general atmosphere of spooky season. There was something wonderful about wearing Halloween costumes and pretending to be somebody else. I also enjoyed feeling frightened without actually being in danger. Halloween gave me the creeps, and I delighted in it.
As I grew older, that fascination grew into an appreciation for horror movies, especially supernatural stories and murder mysteries. I’ve never needed excessive gore, but give me an unsettling atmosphere, a few ghosts or suspicious characters, and a mystery that keeps me guessing, and we have a Halloween date.
Maybe that’s why, after all these years, I’m interested in investigating a disappearance much closer to home.
A conclusion I never saw coming
The case begins in my childhood. Somewhere along the way, an entire future seemed to vanish, leaving behind little more than visions of what I once expected my life to become. There were no witnesses to the exact moment it disappeared, no crime scene, and certainly no convenient explanation. But I had a suspect, one whose presence had been impossible to ignore.
Friedreich’s ataxia (FA).
The evidence against FA was substantial. My ability to walk gradually disappeared, and by 18, I was using a wheelchair. Driving never became a possibility. Ordinary activities grew complicated, and I had to negotiate independence rather than simply enjoy it. Even after completing graduate school, I discovered that pursuing a career could be difficult when workplaces weren’t always accessible.
With every new limitation, another piece of the future I’d imagined seemed to disappear. I expected adulthood to bring greater freedom, but in many ways, my world was becoming smaller. The dreams I’d carried since childhood were slipping beyond my reach, and I couldn’t help wondering what would remain when FA finished taking things away.
For a long time, I believed the case was solved. FA had destroyed the life I was supposed to have.
But I’ve watched enough murder mysteries to know that the obvious explanation isn’t always the complete story.
As I examined the evidence, something unexpected emerged. Although the future I’d pictured had disappeared, my life hadn’t stopped developing. I found opportunities through writing that I hadn’t anticipated. I built relationships with people whose experiences helped me understand my own differently. I discovered interests, responsibilities, and possibilities that my younger self couldn’t have imagined.
None of this erases what FA has taken. I still feel frustrated when I need help with something I once could have done independently. There are places I cannot easily go and experiences I wish I could have. And because FA is progressive, the uncertainty surrounding tomorrow never entirely disappears.
I also recognize that FA has taken far more than abilities and imagined futures from some families. People in our community have lost their lives to this disease, and their absence is real. I would never want my own story of finding purpose to diminish those losses or suggest that everyone receives the same opportunities.
But the more I investigated the disappearance of my imagined future, the less certain I became about what had actually disappeared. The future I imagined as a child was gone, but that didn’t mean I had no future left. While I mourned the life I expected, another life was taking shape around me.
I still have ambitions, frustrations, and plenty of unanswered questions. I continue hoping that treatments will change what’s possible for people living with FA, myself included. And despite everything, I still look forward to what might happen next.
Halloween remains one of my favorite times of year. I still enjoy the occasional fright, especially when a story leads me toward a conclusion I never saw coming. My own particular mystery has taken decades to unravel, and I suspect I’ll continue uncovering new details as my life unfolds.
But I think I’ve finally figured out what happened to the future I thought I’d lost.
FA is guilty of taking plenty from me. It changed the life I expected, sometimes in painful ways, but it didn’t eliminate the possibility of a meaningful future.
And I’m actually happy to discover that my original suspect wasn’t guilty of everything I’d accused it of.
Note: 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.
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