Thinning hair and other signs of aging are a mixed blessing

My hair is finally the way I like it.

In the world of Friedreich’s ataxia (FA), I celebrate every little victory that comes my way.

I grinned — cheesily, vainly — as I rubbed an almond-sized glob of men’s hair gel between my fingertips and worked it into the front, coaxing it to stand up just right.

For the past year, until yesterday’s haircut, I’d fallen into the habit of brushing it straight back, trying to mask what I didn’t want to admit: There’s less hair than there used to be.

Has my hair gotten any fuller since then? I’d like to think so, that the hair-thickening shampoo I bought is working like a charm. But thankfully, I can’t really see the crown of my head. So whether it’s working or not, who knows?

Maybe it doesn’t matter one way or the other. What matters is that now I have a simple hairstyle that I like.

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My hair is getting progressively thinner every day, so I’ve been reflecting more and more on what aging means to me. The main reason I’m uncomfortable with aging is that I’m concerned about losing more of my blessed independence. I don’t believe aging has to mean more dependence, but I know that staying independent gets harder as the years go on.

The truth is, I want to stay functional, young, and handsome. That wish seems universal, reflected in the veneration of others’ incredible (and often filtered) pictures on social media, and in Paul Rudd, looming menacingly in the background of pop culture, eternally youthful and fit despite his years, like the Dorian Gray of Hollywood.

Staying functional

Staying young and good-looking is a pretty common desire. But the other word I used, “functional,” doesn’t seem as widespread. Living with FA has taught me just how important, and how precarious, my capabilities are.

Even though my independence looks radically different now from how it did when I was a child — with the introduction of a wheelchair, grab bars beside the toilet, a shower chair, a pole to help me transfer to bed, and a caregiver for several hours each day — it remains meaningful.

Knowing that FA never stops progressing makes me shudder to wonder what’s next.

But whining about dependence feels irrelevant when I zoom out. FA’s chaotic symptoms have taken many of my peers, my friends, my FAmily.

I loathe FA for that.

The privilege of aging

So maybe I’ve been looking at this whole aging thing all wrong. My receding hairline, though uncomfortable, is a sign that FA hasn’t taken me yet. Every gray hair, though unwelcome, is a way to spit in FA’s face. Every wrinkle is a privilege not everyone gets.

Do I still want to look young and fit? Of course. But I’m increasingly aware that aging isn’t something to hide; it’s something to be proud of.

I’m still here. And so are you, despite FA and all the other odds stacked against us.

I have a milestone birthday coming up — years past the first “expiration date” I was given when I was diagnosed with FA. Maybe I should be embarrassed, or at least hesitant, to admit that I’ll be over the hill this fall.

But I’ve learned that getting over a hill isn’t the end.

It’s how you build momentum.

I’m just picking up steam.

Try and keep up.

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.