Lately, I’ve been experiencing more spasticity and chronic pain than usual. Spasticity makes my muscles feel very tight, which makes movement difficult. Ever since puberty, I’ve experienced more pain every day. The pain was terrible when I went through puberty.
Ten years ago, I had a hamstring lengthening at Children’s Hospital Boston. The recovery was overwhelming. I experienced painful muscle spasms, nausea and vomiting, and an adverse reaction to Valium. I’m grateful that my parents were there with me the whole time. My aunt and cousins also came to visit. I welcomed any distraction while I was in the hospital.
I remember how relieved I was to sleep in my bed after spending a few days in the hospital. I didn’t get much sleep. I was happy to come home and see my dog too. Lowell was always by my side when I was home. Pets make wonderful recovery companions.
When I was growing up, I was told that Cerebral Palsy wouldn’t change. Puberty was when I first experienced functional shifts. This was frightening. I slowly lost the abilities that I once had. I blamed myself. Looking back, this was when I started to develop depression. It made me sad that I couldn’t do as much as I used to.
I could no longer crawl on my hands and knees, and using forearm crutches became harder. When I was 13, I decided that I needed to get a power wheelchair. I was upset that I needed a wheelchair. At first, I was embarrassed to use it. Today I can’t imagine not having a power wheelchair. I’m so much more independent with my wheelchair.
Nowadays, I can’t walk long distances and experience more involuntary movements, particularly in my legs. Besides being annoying, the involuntary movements make activities of daily living such as showering and toileting more challenging. In the shower, my legs often scissor, which means they cross involuntarily. This makes it hard to get cleaned up. Involuntary movements also happen when I’m in bed. When my legs are crossed, it’s hard to sleep.
In addition, ableism can make living with Cerebral Palsy harder. I’m constantly frustrated by the way society treats disabled people. I am a 22-year-old, so please don’t treat me like I’m five. I know that I will never have all of the same opportunities as non-disabled people. In particular, I worry that I’ll never find a paying job.
Some days with Cerebral Palsy are harder than others. Coping with pain is not easy. I do the best I can and try to remain positive. I’m grateful for my friends and family, who make even the toughest days much easier. I am so lucky to have them all.