Adults With Cerebral Palsy: We Exist

Cerebral palsy is one of those universally known and yet universally misunderstood things. If I tell people that I have CP or I explain the significance when asked about my green ribbon lanyard at work, I get the usual response. You probably know the one: “oh…” and they sagely nod. They know. But how can they know when I don’t? Cerebral palsy has been part of my life as far back as I can remember. I was told when I had to wear eye patches or go to PT that I had CP as a little girl. It was the explanation for all of it.

As a kid, cerebral palsy meant that I had constantly skinned knees and wore a brace off and on, on my left leg. It also meant that I dealt with a fair amount of teasing and knew something about emotional and physical pain. But it didn’t stop me. I saw myself as a normal kid. My balance was something to be laughed off and if my back hurt, I didn’t say anything. At a seventh-grade health fair, one of the volunteers at a booth told me I needed to see a doctor because I had scoliosis. Thank you early aughts, I was a combo of edgy, quirky, and the pick me girl. So much cringe! I looked at the kindly lady and said, “The doctor won’t do anything — I have CP.” She said “Oh…”

That was the beginning of my medical cynicism.

I’m far from that 12-year-old girl. A lot has changed in the 20 years that have lapsed, but so much is the same. I’ve had another surgery since then, I’ve tried more PT, I’ve had Botox, and I even tried dry needling with electroshock.

I’ve found that I am the proverbial zebra. Botox makes me feel high. I had an adverse reaction to the dry needling. I know that there is no cure for CP. That fact has been borne home to me throughout my life, but with each appointment hope flares that I may just find the thing that mitigates the chronic pain. I want to find that normal I had as a 12-year-old girl, but I think that has passed me by.

So I try to be my own advocate. I try to level with doctors that I’m not looking for a magic cure and that in general, I know where I’m at.

What I want to know is where my people are? Is there anyone who is existing beyond the advice to “parents of children with CP”? Is there advice to the adults, who wonder if their mobility will steadily decline or if that pain in my neck is because I slept wrong or if it’s a weird spastic thing? I mean these are the questions I’m Googling. Are there people who found out that tongue spasms are truly a thing and it doesn’t mean I’m having a stroke, it just meant that I needed to quit chewing gum? At what point should I decide to quit working a regular 9-5?

There aren’t copious amounts of advice for these questions. And that is how I found The Mighty, but I wish that there were more resources for adults with CP. The brain doesn’t like an unknown and I’m wary of yet another appointment, another opinion, and another flare of hope.