Tuberous Sclerosis Complex Awareness Day “Thingie”

Day 15 of Blogging for TSC Awareness Month

by guest blogger Julia Gray  (Atlanta, Georgia)

I’m supposed to write about my identity.

Frankly, that’s easier said than done.

I’ve been told that INFP personalities,

Like me,

Have a hard time getting their thoughts and feelings

Out of their heads and into real life.

In the words of Holden Caulfield,

I can’t explain what I mean.

And even if I could,

I’m not sure I’d feel like it.

But I might as well try.

I am tumors

Surrounded by a body

A brain

And a vast imagination.

I am an annual MRI visit.

I have to lie completely still, quitting my twitching and itching for an hour while I lay inside a huge metal cylinder that takes pictures of the problem areas.

I am an uneven heartbeat

Belonging to a heart that wants to dance away from its problems

Or just write or draw them into oblivion.

I am the constant fear that when I zoned out just now I had a seizure and didn’t notice.

I am a lot of things.

An imagination.

Unending passion.

Personality.

I’m not just a cluster of tumors.

They say I’m a rarity,

An unfortunate privilege for people like them.

Unfortunate for me, that is.

They love it.

When my disease, my tumors and I walk into a room together, and the putrid medicinal smell pervades my nose,

We are involuntarily attached,

And they thrive on it.

I’m like a scientific oddity.

They are an undesired gift

For them and their white coats to gawk at and inspect.

I am known as my disease.

But I am not my disease.

Or my tumors.

I am a victim of it.

unnamed

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