Zander's Place

CEREBRAL PALSY

In memoriam. Danieal Kelly. Died August 4, 2006. Age 14

I have a specific kind of Cerebral Palsy called Spastic Diplegia, which means that my legs are affected. Some of my other symptoms that don't necessarily affect everyone with CP, while it isn't easy to admit, are:
- Cognitive delays
- Slurred speech (when I'm tired)
- IBS
- Arthritis
- Muscle cramping/spasms/spasticity
- Collapsed arches in my feet
- Fatigue
- Other stuff I'm probably not able to remember right now

It's been excruciatingly difficult to write this page, because I originally wanted to write about my disability from a place of acceptance. But the truth is, I have up and down days. Sometimes I can handle whatever I have going on, other days I want to break something and scream. For example, on some days I can walk all over Boston and be experience no pain and/or very little fatigue. Other days, I get wiped out just from standing in the shower.

Unfortunately, I did not have the best care growing up. My mother, for one thing, was in fierce denial that there was anything wrong - and that is completely understandable on some level. But the doctors I did see had it in their heads that once I was able to walk, I could work and be 100% 'normal.' Stretching hamstrings and tendons, while it does improve mobility, IS NOT a cure. CP is caused by damage in one or more parts in the brain. Brain damage cannot be cured.

Being forced to go through physical therapy since age two, and having more negative than positive results and experiences, made me decide to stop PT when I turned 18. I understand that, when done correctly, PT can greatly improve mobility and strengthen muscles. But after years of being forced to do exercises and not being told their purpose, and being kept in the dark about my disability up until age 12, I decided that I needed to get perspective on, and learn about CP. A lot of people have not been thrilled about this decision, and it's a pain in the ass trying to justify my not being in treatment to people who have no idea what it's like to be disabled. And besides, even if I could walk perfectly, I'd still have cerebral palsy. And by putting PT on hiatus, I'm choosing to be out about having a disability where I wasn't able to be when growing up. And having been forced to feel like there was something horribly wrong that should never be talked about, I feel it's important for everyone with CP to be able to be open and honest about it and for those close to CP patients to be equally open and honest about it... and stop making those shirts on Cafe Press that read, "My child has cerebral palsy confidence" because it's really fucking annoying and, to me, perpetuates the stereotype that being disabled is *so horrible*.

Josh Blue
United Cerebral Palsy
Cerebral Palsy Network
CPN Yahoo! Group
Cerebral Palsy Connection
Disaboom
National Institute For Neurological Disorders and Stroke
Cerebral Palsy Resource Center
Associated Conditions Of Cerebral Palsy