As a child the first thing on my Christmas list was never a working body

Hell it was never on any wishlist – I never knew any different

But the episodes became more frequent and their curious stares dug holes in my chest

All I could decipher was the disgust and I began noticing this didn’t happen to anyone else

They discarded me for someone who’s body worked better than mine

I did not have the vocabulary to know what was happening to me

Doctors took years to figure out why there was a disconnect between my brain and the muscles attached to my bones

And all I could ask myself was why I was so faulty

The diagnosis came at 14 and disabled wasn’t a self descriptor for another 5 years

Even then I don’t feel comfortable in that identity for I am one of the lucky ones who can walk

But this disease follows me into the grave, medication will subdue symptoms until then

Even then my hands tremble enough to not be able to perform everyday tasks on the bad days

I still don’t always pick a foot up when walking

I am one in 150,000

And sometimes I wish I wasn’t so alone in that number


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