What it’s like on the hard days, when hope comes up short
Balancing grief and gratitude can feel impossible when progress stalls
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A race has ended, and this time, I lost.
I want to be honest, even though honesty feels especially heavy right now. I’d hoped to win this race. I really did. I’m deeply disappointed — not the explosive kind that demands attention, but the kind that settles in like fog, making everything feel quieter and harder to move through. The kind that brings exhaustion.
Why am I disappointed?
For people living with Friedreich’s ataxia (FA), disappointment is not an occasional visitor. It’s daily, and sometimes hourly. It comes with delayed emails, shifting timelines, changing eligibility criteria, and the quiet realization that your body doesn’t negotiate on your schedule. It arrives even when you do everything right and still hear “not yet” or “not this time.”
After months of hoping to participate in a clinical trial that held real promise for slowing or altering FA progression, I learned I won’t be moving forward with that opportunity right now. What I experienced is an all-too-common kind of setback in rare disease research: a hopeful pathway that, for reasons both medical and procedural, didn’t happen the way I’d hoped. Even when science tries, and even when data look encouraging in some areas, clinical trials and treatment approvals are complex processes that don’t always yield the outcome we want.
Building a bridge to the unknown
There’s a particular cruelty to this kind of waiting. You’re asked to hold hope carefully and responsibly, without letting it become too heavy or too fragile. You’re expected to stay grateful while also grieving what might not come to pass. That balance is hard. Some days, it feels impossible.
Today is one of those days for me.
It’s hard to see hope clearly when disappointment fills the room. It’s difficult to imagine tomorrow when today already feels like too much.
Most resilience stories follow a familiar arc: They move cleanly from struggle to triumph, offering a tidy lesson and a sense of victory at the end. That’s not where I am right now, and pretending otherwise would feel dishonest.
What I know, especially now, is that my endurance doesn’t feel triumphant. It doesn’t feel heroic, either. There’s no swelling music, no dramatic monologue. Most days, endurance is quieter. It looks like getting up when you’d rather not, speaking up when silence feels safer, or continuing to care about a future that keeps refusing to explain itself.
I feel tired and disappointed, yet I’m still here. That’s the small truth I keep returning to, even when it doesn’t feel inspiring. I am still enduring.
Endurance is choosing not to disappear when disappointment would make that easier. It’s choosing to remain present in a body and life that require constant adjustment. It’s choosing to keep showing up for others, even when you’re unsure what you’re showing up for next.
I think we often underestimate just how powerful that is.
Especially in the FA community, where progress is slow, uneven, and emotionally taxing, endurance is what carries us until the next medical breakthrough. Endurance is the bridge, even when we can’t see the other side yet. It’s why advocacy and research continue, and why our stories continue to be told.
I’m not giving up, not because I feel brave today, but because giving up would mean surrendering the part of me that still believes things can change, even incrementally. Even imperfectly.
Hope doesn’t have to be loud to be real. Sometimes hope is simply the refusal to quit. Sometimes it’s saying, “I don’t know how this ends, but I’m not done yet.” That’s the difference between a radical triumph and a little victory.
If you’re reading this and feel burdened, please remember: You don’t always have to be strong. You don’t have to inspire anyone today. Simply enduring counts. Staying counts. Breathing through disappointment counts.
Little victories aren’t always about winning. Sometimes they’re about remaining. And today, remaining is enough.
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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