The Spoonie Life Is Far From Glamorous

Travel is in my blood. I’m meant to be on the road, or by the beach, or exploring the city. I’m supposed to be travelling the world, making it more accessible for people like me, who have disabilities and itchy feet.

But I’m sick and broke and stuck at home and in doctors’ offices.

My disability has taken everything from me: My health, my travel, my career, and sometimes even my hope in the future.

Next month, I was supposed to be headed to Dallas for a mental health conference. The plan was to soak up as much Texas culture as I could (I’ve never been west of Nashville), learn how to better cope with my Trichotillomania, and write about how to navigate both the Southwest and BFRBs with a disability.

But with $7 in the bank and numerous appointments with a hematologist, an endocrinologist, a gastroenterologist, a pharmacy and an MRI machine, it’s just not going to happen. Not this year.

Don’t get me wrong: I’m grateful to have seen all the places I’ve seen. I’m grateful for what little health I have.  I’m grateful that things won’t be this rough forever. But it’s hard to be grateful at all when you’re being stuck with needles, swallowing pill after pill, hobbling along with a cane when you’d rather be working diligently at your dream job, helping people and making a living.

This is not what I expected my life to look like.

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