Fearless Living with CP; Creating Your Own Norm
A Guest Blog by Lydia
As someone with spastic diplegia cerebral palsy, I grew up with the typical trajectory…I have had full length braces, ankle length braces to insoles, a walker, a wheelchair, and went to a lot of PT and OT. I have what is called a “scissor gate” and it is difficult for me to straighten out my legs. I also get extreme tightness in my muscles that makes doing certain activities difficult. Growing up, I was a very determined child and people often called me “fearless.” It was hard for me to do normal activities that other kids were able to do naturally such as swinging or roller skating, but I wanted to look “normal”, so I would literally push myself to extremes to do things that the other kids were doing. I was not confident in myself in terms of being “different,” so I worked really hard on my own time.
When I was a junior in high school I wanted to learn to drive because that’s what everyone was doing at my age, and I remember watching an episode of Degrassi the Next Generation, and there was a character on there who had a disability. She was able to drive and it really inspired me. I wanted to be normal like everyone else, so I signed up for drivers ed at my school and I didn’t even put that I had a disability on the application. Things went well with driving around the parking lot but it wasn’t till I had to start driving on the highway and for longer periods of time I began to see that I was having difficulty with controlling my foot flexion and things like that, so drivers ed ended up a mess for me. One day I will learn to drive but I kind of put it on a shelf after that. But, all that to say, I was proud of myself. This is pretty much what adult life was like for me after high school, with CP. I had a lot of days I missed college or outings because of something like muscle spasms and there was not a lot of research out there for “adults” to look into or learn from.
As an adult with CP, I came to a point that I was tired of trying to prove to society that I was just like everyone else. It got really exhausting and truthfully no one told me that I had to prove myself, but somewhere as a kid it got in my head. Growing up whenever I travel or take a field trip, I always brought a wheelchair with me to use whenever I was tired or needed a break. I didn’t have one after my mom’s passing, and I also was not doing physical therapy or having any follows ups of any kind with my CP at the time. I was left clueless on what was normal and what wasn’t. My mom was my main advocate, no one else in my family understood what I needed or anything of that nature in terms of my disability and neither did I. I realized I was missing a lot of school and work because I stayed in my dorm on days my legs were hurting or I was too tired to walk anywhere, and this is when I was determined to find someone that knew something.
When I moved to New York, I started to see a physical therapist who told me I had muscle weakness and was approved for a small number of visits by my insurance. I didn’t like it, because even though inside I wanted to feel “normal” like everyone else, I was doing the same exercises as everyone else and it was not catered to my specific needs as someone with CP. The journey really began there for me; finding the right information and physicians, and that’s how I ended up at Weinberg Family Cerebral Palsy Center. Now I have been getting Botox treatments and PT through the Center with Dr. Azizi, and it honestly has helped greatly for me. I still have tightness and things like that, but I can move more without difficultly compared to prior.
For me, I just have to be mindful of my limits and pay attention to my body as far as my CP is concerned. I do not let my CP get in the way of me enjoying life. I don’t even tell people I have it unless I’m doing something or have to do something that I know will be difficult, like standing up for more than 5 minutes or doing a lot of walking. I take my time for the most part and I ask for help when I need help.
My advice to others is be brave and speak up about any questions, ideas, or concerns you may have because you are truly cared for at WFCPC in every way. From the receptionist, to the nurses to any doctor you may see there and I am speaking from experience with every appointment I’ve ever had...they are patient, they are kind and great listeners. People always say you should advocate for yourself, because you know you best. But, if I’m being honest, some of us don’t know how to advocate for ourselves or like I did, we experienced traumatic things in life that hindered us a little bit with speaking up and asking for help or asking questions. At the Weinberg Family CP Center if you don’t know it’s totally okay to say “I don’t know,” so that’s my advice too… it’s okay to not know, say you don’t know even if you have to do it with tears. Ask questions and try things. Because CP affects everyone differently.
Lydia Charmaine, is an adult with Spastic Diplegia Cerebral Palsy (CP) and current New York resident. Her favorite phrase to say is "Cerebral palsy may put limits on the things we can do physically but it doesn’t have the power to put limits on our destiny. It may have boundaries on our bodies but there are no boundaries on our hearts."
For more information about the Weinberg Family CP Center, visit our website.