The privilege and hardships of growing older with FA

This morning, I marveled as the seeds I planted over a week and a half ago were pushing through the soil to become seedlings. I find this so fun every time. Maybe gardening isn’t your thing, but it’s hard not to be awed by a sunrise over the Grand Canyon or a starry night in Vermont. Name the miracle of nature that most astounds you.

Germinating seeds in late winter and early spring is one of those miracles for me. I’m grateful to enjoy another spring. That’s a blessing and a privilege, especially considering that the doctor who diagnosed me with Friedreich’s ataxia (FA) predicted I would die by the age of 35. I’m now 62. Don’t think I’m not appreciative of that!

I’ve attended the funerals of friends who passed away far too young from FA. That could’ve been me. I realize that while I’m not lucky to have FA, I am fortunate to have milder symptoms.

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Aging with a rare disease like FA presents unique challenges that can be physically and emotionally taxing. Everyone living with FA experiences disease progression that is often unpredictable and symptoms that worsen over time. This means that daily activities become increasingly more difficult. Having daily living get more and more difficult sure beats the alternative, but it can feel like my life is going backward.

One thing I find troubling is when people compare the typical losses of aging that everyone experiences over a certain age to the decline of my abilities due to FA. While everyone over a certain age undergoes a diminishment of physical abilities, the severe and early decline that I, and many others like me with degenerative diseases, experience is not the same.

I see my able-bodied friends my age kayaking in Scotland, biking in Tuscany, hiking local trails, and more. I would love to have these kinds of adventures. My FA symptoms mean I need to seek out different types of adventures. Importantly, I can still have them, but they are different in nature. My friends in their 60s often feel more achy after their journeys than they did when they were 25, but they still participate in them as they always have.

When people tell me they also feel less capable as they age, it is meant to show that they can relate to the losses I’ve endured. I appreciate that as kindness. However, it actually reveals their lack of understanding of my experience, which leaves me feeling distant from them rather than closer, as they had intended.

Sometimes people around me say, “Getting old isn’t for the faint of heart.” I understand that aging is hard on the body. However, I think it’s a bit dismissive of the privilege that comes with aging. Once again, I find myself agreeing with both the positive and the negative: Yes, it is a privilege to age with FA, and yes, it is difficult to age with FA.

That is one example of how I find aging with a rare disease hard.

Today, I appreciate the crocuses and snowdrops blooming in my garden and that I’m celebrating another spring. It’s much more likely that I will die with FA than from FA. The cure I’ve been striving for gives me purpose, even if it comes too late for me. Eradicating FA for those who come after me is meaningful. I am here, and that matters.

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.