Living with CMT - Bethany's Story

My father and I were recently on a walk near my home in Golders Green, London. As we passed a café, a middle-aged man caught my eye — and gave me a smile. It was a smile I recognized, because it’s one I’ve seen many times before. Beyond just a friendly nod, it contained a silent acknowledgment of struggle.

Then he reached up, removed his hat, and swept it forward in a dramatic gesture toward me. I smiled as my father continued pushing my wheelchair. As we got closer, the man repeated the gesture, this time saying, “I tip my hat off to you.”

I appreciated his gesture. I believe he meant to brighten the day of someone he assumed had drawn a hard lot in life. And yet, I couldn’t help but feel he’d chosen the wrong recipient. I was just one of dozens, maybe hundreds of people walking past him that day. Why not tip his hat to the single mother wrangling her toddler? Or the man who’d just lost his job? Or the person quietly grieving someone they’ll never see again?

Because what I’ve learned in the 20 years since being diagnosed with CMT1A is this: everyone — every. single. one. of. Us. — will, at some point, live with struggle. With deep challenge. Mine just happens to be more visible than most.

And the truth is, I have an amazing life.

That’s not me trying to be noble or act as some kind of inspiration. I’m not reciting a mantra I don’t believe, or trying to turn hardship into a lesson. My life really is, generally, pretty great.

I’m married to a wonderful man. Despite our Midwestern American upbringing, we decided to take a leap and move to London, England — one of the most fascinating, vibrant cities in the world — and we’ve built a life here. We’ve bought a home. I’ve had a fulfilling career. I’ve traveled the world: climbed monasteries in Bulgaria, eaten gelato on the streets of northern Italy, riden a camo cart through India, gone looking for Nessie in the lochs of Scotland.

And now, we have a son. A perfect, beautiful little boy.

I have an amazing life.

Please don’t misunderstand me. I don’t mean to minimize what CMT has cost me, because the costs have been great. I’ve had bone-sawing surgeries on my legs. I’ve endured excruciating kneecap dislocations. I’ve had to let go of certain dreams. Every step I take demands focus and energy beyond most people’s imagination. And I’ve missed out on a lot — not always because of the disease itself, but because of the shame I carried alongside it.

I can’t carry my son. I can’t chase after him in our backyard. I can’t get down on the floor to play with his blocks. (Well, I can get down. I just can’t get back up.)

All of that, the hard stuff, that’s real. But it’s not the whole story. 

So if a kind, empathetic gentleman on the streets of London ever looks at me and quietly assumes that my life must be harder, or sadder, or less full than his own — he’s quite, quite wrong.

Bethany Meloche is a writer, speaker, and creator of a popular YouTube channel about living well with Charcot-Marie-Tooth disease. Her award-winning memoir, How Should a Body Be?, shares her journey of self-acceptance in a world built for the able-bodied.

A science graduate from UC Berkeley, Bethany blends personal insight with professional expertise to support patient communities globally. Her work has been featured inThe Mercury News,Metro UK, and on international stages. When she’s not consulting or creating, you’ll find her traveling, researching health optimization, or indulging her love for dachshunds and English cottage gardens.

Connect with Bethany:

📖  How Should a Body Be? – Available here

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