Having cerebral palsy is as natural to me as walking is to someone else. A common request I receive is to explain what it’s like to have cerebral palsy. While I can easily explain the bulk of the disability, the specific details might fall through the cracks. Here are some of those little details about cerebral palsy that hopefully will increase understanding and give you a glimpse into what it feels like.
- Like most, I like romance and to be close to others. I love holding hands and cuddling, but spasms and stiffness will not always allow it. Whenever I try to relax and let someone hold my hand or cuddle, I might stiffen or have a spasm. It is frustrating for yourself and partner. I hold my breath to keep myself still, but patience and humor help in any situation, especially when trying to be romantic.
- Even those with the best bladder still need to use the bathroom. Most people forget that people with cerebral palsy do need to use the bathroom. I personally hate asking to use the bathroom even when I really need to because I know it’s not easy to take me. So, I often hold it and politely refuse to drink until I can get to a bathroom. If you’re with someone with cerebral palsy, just let them know that you don’t mind helping them in the bathroom.
- Independence is a goal that people with cerebral palsy strive to obtain. Of course, I like to be independent, but I still have limits. For example, when at home, I am usually out of my wheelchair and can do many things on the floor. However, I still get tired and need a little help.
- Some people who have cerebral palsy need help getting food, or to be fed. Just because I can’t get my own food doesn’t mean I’m not hungry. Not being able to feed yourself is as frustrating as not being able to use the bathroom by yourself. You still feel hungry, even between meals. (Also, comments on the amounts I eat or drink aren’t necessary. Please, when I ask for a second helping, there’s no need for a comment to make me feel bad.)
- Having cerebral palsy doesn’t equate to being in pain. However, moving constantly and various body positions will cause arthritis and sore muscles. Usually, people won’t complain about every ache and pain, but that doesn’t mean they don’t exist. Our bodies move 24 hours a day. If I can’t go someplace or do something because it’s physically uncomfortable, please understand that it’s not personal. If I could do it, I would, but I know my limitations.
- A common thing I hear about my children is that they must be great helpers. Yes, my children help me with some things. But, no, I didn’t give birth to them so they could be my helpers. As any family, we help each other with anything that needs to be done. Yes, you might see my son pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase. However, you won’t see them cooking meals, dressing me or other things directed to my care. Once in awhile you might see them feed me or give me a drink. But also know that I’m helping them, too, like any parent would. My children know that we help each other because that’s just what we do.
- When people find out I’m married, the often comment on how lucky I am to have him. Yes, I am lucky to have my husband, but not because he accepts my disability. Many guys accept my disability and would want a relationship, I’m lucky to have my husband because he’s funny, kind, considerate, handsome and responsible. He’s a good cook and likes to have fun. He does accept my disability, but it’s accepted by many.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.