Today is October 6th which means that it is World Cerebral Palsy Day. I have lived with CP my entire life. After 24 years, I’ve learned to make the best of it.
One of the most challenging parts of living with Cerebral Palsy is chronic pain. Spasticity is a symptom that frequently leaves me exhausted. My muscles are always stiff and tight.
Stretching, physical therapy, and Botox injections can help me move around more easily when I have increased spasticity in my lower limbs. I’ve learned to cope with the physical pain of cerebral palsy.
Unfortunately, having a disability can mean that you have to fight for things you need. This year has been filled with bureaucratic hurdles. I’ve had to deal with health insurance, the local community college, and the Social Security Administration. It is frustrating to have to figure this out.
For me, isolation and loneliness are also challenging. Growing up, I was bullied in school. The older I was, the more isolated I felt.
However, I have been blessed with a wonderful family. My entire life, I have been surrounded by loving people. My parents, sister, cousins, aunts, and uncles have always been there for me.
Over the years of working with many of the same people, members of my care team have shown me how much they care about me. I first met my longtime paraprofessional in 2004. Nearly 20 years later, we talk on the phone weekly.
At school, I knew she cared about me I enjoyed her company. I recall many times during the summer when she would take me to the library, out to eat or to local playgrounds.
My best friend was an instructor at the martial arts school where I took lessons. Over the years, we grew closer. He is now my roommate and full-time PCA. He knows little things about me, like my favorite juice flavors and my favorite foods.
I have wonderful relationships with my medical team as well. I’ve worked with my current PT for three years now. I look forward to working with him because we enjoy talking about sports, our family lives, and the TV shows we are watching. I appreciate when someone who is a member of my care team gets to know me beyond what they see in my medical records.
Cerebral Palsy has caused me to question my worth and my life’s purpose. I realize with time that everyone is worthy. Everyone is valuable and has something to offer the world.
Source
Bainbridge, Carol. “Holidays and Observances in October.” The Spruce, The Spruce, 5 Sept. 2023, http://www.thespruce.com/special-days-and-observances-in-october-1448893.