Making peace with the changes FA brings, even as I hope for FA to change

My husband, Dave, and I recently drove by the mansion where we were married and had our reception. Back then, it was a beautiful, grand old stucco building with a yard behind it where we had our ceremony and a breathtaking view of the ocean. We were lucky: It was a beautiful fall day, the sky was an amazing blue, and the ocean glittered behind us.

This time, though, we saw a dilapidated manor trying to hold on to its former glory. Plywood covered the doors and windows. Signs warned people not to go in. Vines crept over the stucco. It was sad to see something that had once held so much beauty and joy in such disrepair.

Seeing it that way got Dave and me thinking about change, that constant force none of us can avoid. He feels that change is mostly for the good. I agree, mostly. But living with Friedreich’s ataxia (FA), a chronic, degenerative disease with no cure, has made my relationship with change more complicated.

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Good changes and bad changes

For me, change is both positive and negative. Since I was diagnosed, researchers have identified the gene that causes FA. There is promising work happening to treat and, someday, cure the disease. We now have an FDA-approved treatment, an FA community that keeps getting stronger, and more reasons to hope than we’ve ever had.

But when I think about how my own body has changed, I remember the young woman who walked down the aisle with help from her brothers-in-law, whose strong legs held her as she said her wedding vows, and who happily mingled with guests for hours without fatigue stopping her from reaching everyone.

With FA, change is not one big, dramatic moment. It is a series of small losses that can be easy for other people to miss. One day, years ago, I realized I was holding a wall a little longer than I used to. Now, before I transfer from my wheelchair to the couch, I have to make sure my feet are braced by a wall or something solid, because my legs can slip out from under me.

Change is complicated

Living with a progressive disease like FA means I am always trying to make peace with a body that keeps changing the rules. Just when I adjust to one limitation, another one appears. Sometimes I can’t even fully adjust to the first loss before the next one arrives. FA doesn’t care if I’m ready. Over time, I’ve had to learn how to ask for help, accept help, and let go of the idea that needing help makes me less independent.

There are times when change makes me mournful or angry. I wish I didn’t have to be brave about things other people take for granted. I wish I could walk into an old building with steps and narrow doorways, go for a walk in the woods, ride a horse, or move through a crowd without wondering if there is enough room for me, my wheelchair, and my service dog.

Seeing the mansion aged and boarded up reminded me that everything changes, but FA makes change feel deeply personal. It is not only about watching the world change around me; it is feeling change inside me, in my muscles, in my energy, and in the way I measure distance and possibility. I know everyone feels changes with age, but FA supercharges those changes.

Still, change has also shown me tenderness. It has shown me Dave’s steadiness, my family’s love, the kindness of friends, and the strength of a community that understands without needing everything explained. It has helped me notice beauty in smaller moments — sitting beside the ocean instead of walking in the sand, laughing with people I love, even when I am tired, remembering who I was at my wedding and recognizing that she is still here. I keep finding joy in those glimmers of everyday beauty.

So, when I think about change, I cannot call it all good or all bad. It is complicated. FA has forced changes I would never have chosen, and I will always wish and work for a cure. But I am also still here — still adapting, still loving, still remembering, and still looking for meaning.

Maybe that is what I felt as we drove away from that mansion — sadness for what had been lost, gratitude for what had happened there, and an understanding that even when something no longer looks the same, its story is not erased.

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.