Reframing trauma as a purpose in life to help others with FA

I help lead teen hangouts for the Friedreich’s Ataxia Research Alliance (FARA), so I hear about the trauma often faced by these strong, emerging adults with Friedreich’s ataxia (FA) and other forms of ataxia. Their stories pull me back to my own diagnosis 44 years ago.

As someone with a master’s degree in social work, I understand why traumatic memories remain so vivid. Our brains hold on to danger as a survival instinct, which has helped humans evolve and avoid life-threatening harm. If we reframe it, we can use it to help others.

I still remember the loneliness and fear I felt when the doctor explained that FA would affect my mobility, motor skills, and heart function. In one conversation, the long and active life I had imagined shifted. My dream of horse riding in the Olympics disappeared. Even then, I knew the odds were long, so I had built a backup dream: managing, and maybe someday owning, a horse farm that trained Olympic-level horses and riders. But even those less demanding jobs required physical prowess that the doctor told me I would no longer possess.

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My parents lost something that day too: the healthy life they had pictured for me. At 19, I couldn’t yet make room for their grief. Over time, I’ve come to understand that my FA didn’t belong only to me. It changed their lives as well. Their burden differed from mine, but it still mattered.

What I know now, and what I could not have known then, is that trauma doesn’t have to stay frozen at the point of impact. For a long time, I saw my diagnosis as a hard line dividing before from after. Before, I rode horses, made plans, pictured barns and arenas, and imagined a future built around movement. After, I sat with a name for what was happening to my body and tried to understand how one appointment could rearrange an entire life.

Reframing that trauma has never meant pretending it didn’t hurt. I do not call FA a gift, and I do not minimize the grief that came with it. Instead, I try to let the story grow larger than the worst day.

Building a bridge

When I sit with teens who are beginning to understand what FA may take from them, I don’t look back as someone who escaped the fear. I look back as someone who remembers it clearly enough to recognize it in them. That memory, once a source of sadness, now gives me a bridge. It connects me to those young people and to the broader FA community.

I believe one way people can use trauma to help others is by letting it serve as a catalyst for understanding. We don’t need to offer easy answers, because there are none. We don’t need to insist that everything happens for a reason. Often, the most healing thing we can offer is our honest presence. We can say, in words or simply by showing up, “I have been in a version of this dark place. I cannot remove it for you, but I can sit here with you while your eyes adjust.”

The FARA teen hangouts show me how powerful that presence can be. A teenager may not want a lecture about resilience. I certainly didn’t. But they may need to see an adult with FA who has carried disappointment, anger, fear, and loneliness and still found ways to laugh, work, love, contribute, and belong. They may need proof that the diagnosis is real, but it does not tell the whole story. Maybe, with time, they will also find a friend who can walk the road of life with FA beside them.

I no longer lament that dream with horses. Now I dream of helping others with FA. It is normal to lament a dream like that if that’s where you are, but you can change your goals.

Reframing has given me that purpose. My younger self’s pain still lives in me, but it no longer exists only as a wound. It helps me listen better. It helps me notice the silence in a teen who says they are fine but looks far away. It keeps me from rushing someone toward hope before they’ve had room to grieve.

My trauma became useful when I stopped asking it to disappear and started asking what it could teach me about compassion. In that way, the story I never wanted has become one I can share carefully and personally, so someone else can feel less alone inside theirs.

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.