When more hope for the future of FA brings greater vulnerability

For most of my life with Friedreich’s ataxia (FA), hope felt distant. When I was diagnosed back in 1994, information about this weirdly named disease was difficult to find. The idea of treatment existed mostly in the language of “someday,” and even that felt optimistic. Many of us in the FA community learned to live with a strange emotional contradiction: hoping for progress while never fully expecting it to arrive in time to benefit us.

That mindset shaped me over the years, and it’s part of why I named my column “Little Victories.” The title was never meant to be a cute slogan about endless positivity. It was about survival. People with FA live in bodies that are progressively degrading, so learning to notice smaller forms of meaning becomes necessary. Over time, I stopped measuring life in FA breakthroughs largely because there weren’t any.

But recently, things have started to change.

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Over the past several years, FA research has accelerated in ways many of us once struggled to imagine. Treatments are no longer theoretical ideas buried in scientific papers. Conversations are happening now. Clinical opportunities exist now. For the first time in my life, some alleviation from this disease feels close enough to touch.

While treatments like Skyclarys (omaveloxolone) have brought meaningful progress, many people with FA are still waiting for breakthroughs that will dramatically alter their daily lives. Even so, hope feels more realistic now than ever before. I was not emotionally prepared for how vulnerable I would become once hope stopped feeling abstract.

For years, disappointment created a kind of emotional armor around me, a cocoon that became comfortable. As my abilities continued to decline, treatments stalled, and the disease kept progressing, I learned to distance myself from the possibility of improvement. Inside that cocoon, I still advocated, stayed informed, and cared deeply about the future. But emotionally, I slowly divorced myself from the idea of getting better, because that distance felt safer than imagining real change.

Today, eager to participate in trials of emerging treatments, I find myself having phone calls, appointments, and conversations that once felt unimaginable. Doctors discuss my specific situation. Timelines stop sounding theoretical, and the future begins taking up space in my life rather than remaining a distant concept.

Getting closer to a potential treatment is undeniably relieving, but it has also forced me to confront how much fear exists inside hope itself. Even after all this time, the closer possibility feels, the more attached I become to the idea of a different future, and that attachment can feel terrifying.

Lately, I’ve found myself thinking about the story of Moses — not because I see myself as a prophet, but because Moses spent years moving toward the Promised Land, never knowing whether he would arrive there.

Living with FA can result in anticipatory grief. I begin imagining stability, independence, more time, or even a little less worry about the future. Then I realize how badly I want those things and grieve the possibility of not getting them.

I still don’t know what’s next for me. There are moments when I feel optimistic and others when I feel emotionally exhausted. Sometimes I surprise myself by not feeling devastated, only to realize later I’m actually fatigued from years of carrying anticipation, disappointment, and cautious optimism all at once.

This moment in FA research feels heavy in ways I never expected. For years, I prayed for research to move fast enough to matter to people like me. Now, we may finally be entering that era. But nobody prepared me for the emotional cost of lowering the protective walls I spent years building around myself.

The future finally feels close enough to touch, and that closeness brings a level of vulnerability I no longer know how to avoid.

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.