In the breath between waiting and knowing, I feel hope and fear

There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the future teeters between two possibilities.​

Living with Friedreich’s ataxia (FA), where progression often feels unidirectional, the chance of reclaiming lost ground is both exhilarating and daunting. My recent health challenges disrupted my autonomy and tested my resilience. Yet amid uncertainty, a flicker of possibility remains, a chance that the tides may shift, even slightly.​

If the outcome is favorable, regaining what was momentarily lost will be a meaningful milestone, a testament to perseverance and the body’s capacity for healing, even when hindered by FA. If it’s not favorable, the path to recovery may still be ongoing, requiring continual adaptation.

I choose to write this column now, before the outcome, to capture who I am in this moment — a blend of hope and apprehension, grounded in the present. FA has taught me that identity isn’t defined by physical capabilities, but by one’s enduring spirit, which navigates each challenge.​

This pause, this breath between what was and what will be, is a space of reflection and reaffirmation.​

Recommended Reading

April 22, 2025 News by Lindsey Shapiro, PhD

TRACK-FA study IDs possible MRI biomarkers of disease progression

Holding space

Life with FA has shown me that expectations can be so fragile that they’re almost meaningless. The FA community teaches me invaluable lessons: how to define myself, how to recalibrate, and even how to embrace my disability as darling at times. I’ve also learned to reframe what progress and success look like.​

Even so, the rare possibility of regaining something once lost, even partly, feels foreign in the world of FA, where the trajectory is often one of gradual loss. I don’t want to take this rare possibility for granted.​

If the news is good, if my independence is restored, it will be a victory worth celebrating. I hope I allow myself that celebration.​

If the news is challenging, if I must adjust again, I hope to meet that reality with resilience — not because it’s easy, but because it’s who I aspire to be. Even when it’s difficult.

In this uncertain in-between, I hold myself to this: that the core of who I am — hopeful, determined, stubbornly optimistic even when it hurts — will remain steady regardless of the outcome. Neither triumph nor disappointment will diminish the hard-earned endurance I’ve built over years of navigating life with FA.​

I’m writing this before I know what May 13 will bring. Since clarity and hindsight tend to reshape our stories, I want to capture the rawness of hope and fear as they are right now: intertwined, both fierce and fragile.​

Whatever happens, I’ll move forward. Perhaps with a bit more celebration. Perhaps with a bit more grief. But either way, I will move forward.​

Because that’s what living with FA, and living fully, demands.

And because that’s who I want to be.

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.