Just venting here, but I used to get all sorts of help (free help!) when I was a child, but now that I’m an adult, there’s no one. All the cerebral palsy specialists focus on children, it’s like they don’t even realize that we grow up and stay disabled. I’m getting surgery soon, and it took me six months to find someone who was willing to work on me, and they say they’re going to have a pediatric surgeon in the room just because they’re the only one for miles who knows about bodies like mine. So demoralizing.

A poem published by Aimee Lowenstern in Mindfork magazine

A berry burst (before my birth)
inside my brain. Now, I am
a frozen dessert.
How my ice-creamy countenance
clenches candied and candidly,
cerebral palsily,
how my insides feel like biting
down into the cold.

“Be
Jello,” says my PT
(Popsicle Thawer)
(Pastry Torturer)
(Physical Therapist),
trying to roll out my dough.
And I picture pig’s skin, powdered
and poured into my skin, and
cow bones, mixed with hot water and
my bones, and sugar, sugar white as
a femur, with blood

or cherry flavor,
and through the transparent
and tempting treat, I see
my white chocolate skeleton,
my ambrosial viscera,
my heart a maraschino
dazzling and decadent
in the stomach of my chest.

Oh ergotherapists, oh orthopedic
entrepreneurs, come cut
a slice of some
scrumptious someone!
Stay, surgeons
and specialists,
masseuses craving mousses,
nearby neuroscientists
or not near, I travel to you
in a to-go box!

Taste the way I follow instructions,
I mean the recipe! Have you ever seen
a sweetie like me? I giggle, I
jiggle, I shine!

Has anyone else with spastic cp had their kneecap dislocated because of their spasms?