My Disease Wants to Bring Me Down, But I’m Going to Crush Life


Dear Charcot-Marie-Tooth Disease,

Go f*ck yourself.

It sucks waking up every morning wondering how much muscle you killed in the middle of the night.

That’s if I got up in the first place. Because you woke me up every 30 minutes with uncomfortable numbness and excruciating nerve pain every night for the past 10 years.

I’m exhausted.

You’ve got me in a lot of trouble. I’m late to work every day. Every single day. I hate it. My boss hates it. My colleagues hate it. And trust me, I hate it, too.

But I wish they understood what it’s like living with this disease.

I hate having to get up extra early to train my muscles extensively to try and save as much of them as I can — because I don’t want to rely on a wheelchair later on in life.

I hate leaving work every week in the middle of the afternoon for long doctor’s appointments.

I’m pissed that in the last two years, I’ve broke three bones, on three separate occasions, in my hand, feet and legs, because the muscles you killed aren’t there to protect them like they should.

Those breaks left me sidelined and unable to do the things I love, like working out or doing CrossFit — which is another battle against you.

And then I miss more work. And everyone (again) thinks I’m full of shit.

Because let’s be honest, you’re good at hiding yourself. No one can see you. Only I can. I hate you for that.

To my boss and colleagues: these aren’t perks like you think they are. I long for the day to not miss half my workday because of a doctor’s appointment. And the nights I don’t have to spend playing catch-up.

I’d love it if the pharmacist and his entire staff didn’t know me by name.

Your disease in my body affects those closest to me. Like on Saturday afternoons, when my schedule is wide open and my daughter Ella just wants to go, go, go. But I can’t walk another step because my feet and legs are tired and in so much pain. I just want to sleep. But I get up anyway. I won’t let her see that weakness. You won’t win.

You cost me a lot of money, too. The debt keeps climbing. A thousand here, two thousand there. I make enough money to live comfortably, but you’re making it really difficult with all these prescriptions, tests, medical equipment, and doctor’s appointments.

Enough is enough.

But despite all the things you do that really piss me off, you’ve changed my perspective.

I live more spontaneously than anyone you’ll ever meet.

I make my own rules. I’m not sure if it’s because you already give me too many, or if it’s because the ones most people make are bullshit, and life is too short to be crippled by unnecessary red tape and dated ideals.

I have a lot of fun. I don’t live off of a script like most people in this world. I think, and I do, differently.

I truly grasp that life is too short. Who knows, you may win, and I may not walk when I’m 50 years old. But in the meantime, I’m going to crush life. I will beat you down. And I won’t let you control me anymore.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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