What Cerebral Palsy Is Like for Me

Cerebral palsy is very much an “umbrella” condition. People who are affected by it may wear many different hats.

I happen to have quadriplegic spastic cerebral palsy, which in simpler terms means all four of my limbs are affected. My upper extremities such as my hands and arms are limited in range of motion. It is almost as if my arms and wrists are frozen. It is hard to turn them over, and I cannot fully turn over either hand. My arms do not turn either. When I go to have my blood drawn or an IV put in, I have to have it done in my hand from the front. Otherwise, I am extremely fortunate with my hands and have very good use of them.

My lower extremities are not as fortunate, however. I cannot walk at all and I am dependent on my wheelchair to get around. I have very spastic legs and feet. This basically means the muscles are constantly contracting and releasing all day. If I had to describe what it felt like, I would have to say it feels like my legs and feet are burning, especially if I spend too much time in my wheelchair. Sometimes I have issues with my feet swelling.  This can also hurt, so I have to be aware of the time I spend in my wheelchair.

As we age with cerebral palsy, we tend to have residual issues that start appearing due to the CP wearing on our bodies. Keep in mind that cerebral palsy affects each individual differently, but for me, the residual issues started when I was 30 years old. They include arthritis in both my knee joints and in my right hip joint. This is very painful and uses up a lot of my already limited energy for the day. People with cerebral palsy use up about three to five times more energy than a “normal” able-bodied person does just by moving around. To be completely honest, even moving around when necessary can hurt because of the stiffness of my muscle groups, so when you add arthritis to the mix, it makes it that much more difficult. It is hard being tired all the time, even if I don’t do much. At this point, just living takes so much energy.

Despite all of my troubles and my frequent lack of sleep due to all of my issues, I try my absolute best to stay upbeat, positive and happy. I am the type of person who really enjoys life and tries to make the most out of what I do have and what I can do. I know I am blessed abundantly with a good life and an even better family. Life is far too short to be bogged down by unhappiness and sadness.

Don’t get me wrong, I don’t have any super-human powers. When the cape comes off, I have breakdowns, I get mad. I am human after all and sometimes the load just becomes too heavy. Fortunately though, most of the time I am content and happy. I know that at any time, my life could end. My curtain could come to a close, and I want to be remembered as someone who was happy despite her challenges and never stopped fighting.