Loeys-Dietz Syndrome Type 4

After a lifetime of suffering without answers, through genetic testing it was revealed that my TGFbeta2 gene was misfiring, in a unique unusual variant I was born with and found only in my family, causing an unstable Extra Cellular Matrix similar to collagen-but not actual collagen sadly- think fake spider-web being taken down the day after Halloween. And so, with this extreme connective tissue disorder comes multi-systemic problems. Some days are much better than others, but all my days benefit from grabbing the creative bull by the horns and using sheer will and mental effort to dance it into being. Having a physical disability sucks, and it’s unnerving when you realize you have so much to express and perhaps not much time left to do it.

Here’s how my Sickly Scared Self would care to express it in a debbi-downer of a poem-

Distraction Therapy

Confined sometimes in the bed-bound days

I rest in painful, contemplative positions

Attempting to fashion some fortitude

Through creative means, as ever

Because distraction through action

However small or lofty, is better

Than waiting to die while in the panicked,

Prolonged agony of unrealized dreams.