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March is National Cerebral Palsy Awareness Month. This is an important subject for me because I have Cerebral Palsy. Just like so many other things, there are a lot of misconceptions about CP so I am going to re-share the post I published last year about my experience in growing up with this condition.
(I will also be doing a personal Facebook Live on Saturday, March 3, 2018 at about 10:30am EST about my experience with CP, as well. I hope you will join me.)
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Did you know that March is National Cerebral Palsy Awareness Month? Me neither, and I’ve had cerebral palsy my whole life!
Having cerebral palsy isn’t something that I usually write/talk about and I’m not sure if I’ve even mentioned it on this blog (and I’ve been blogging here about 5+ years). However, because 2017 is my year of courage, I am kicking fear in the butt and sharing a little about it.
The Oxford Dictionaries define cerebral palsy (CP) “as a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.”
I remember being told years ago that my CP was caused to a lack of oxygen to the brain either before, during, or after birth. However, it is now believed that only a tiny fraction of people get CP from a lack of oxygen. Most people get CP from some type of abnormal brain development or brain damage while the brain is still developing, again, usually before, during or shortly after birth.
One thing about CP is that it is not degenerative. In other words, the condition does not get worse over time. Particular symptoms related to CP may get worse over time but the brain damage itself doesn’t get worse.
“Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.” (Cerebralpalsy.org)
The effects of Cerebral Palsy can range from the very mild to the very severe. A lot of people with CP have other conditions and/or complications related to having cerebral palsy. Some people with CP need total care and help in functioning and some do not need any help at all. In fact, cerebral palsy is as individual as the individual who has it.
Cerebralpalsy.org explains cerebral palsy perfectly. It is NOT contagious, curable, progressive, hereditary, or life-threatening. It IS chronic and permanent but it is also manageable.
As for me, I have a mild case of CP. At first glance, no one would ever know that I have cerebral palsy, until I start walking. I have a deeper arch in my spine than most people and my right leg is turned in at the hip all the way down to my foot. It is not as bad in my left leg. I walk “funny” and have balance issues. Sometimes my leg gives out and I fall. :/ Besides this, my muscles are weak, I don’t have the best coordination, and my muscles contract and spasm a lot, especially at night or if I sit or stand for any length of time. I also have other issues related to the cerebral palsy but I won’t bore you with the details!
The one thing I want to make clear is that people with cerebral palsy are not “retarded.” I hate that word on so many levels. It is true that cerebral palsy is a neurological condition caused by damage to the brain. BUT, that doesn’t mean a person with cerebral palsy can’t think for herself, or is “stupid.” Even people who have more severe cases of CP can be very smart.
The other thing I want to make clear is that people with cerebral palsy aren’t to be feared, avoided or ignored. Or mocked and made fun of. I can’t tell you all the names I was called growing up. We are people just like everyone else. We have feelings. We have our own feelings, gifts and challenges just like everyone else. And we deserve a chance – just like everyone else.
I am not going to pretend that life with cerebral palsy was (or is) easy. From being sent from one doctor to another, the exercises and therapy, and everything that comes with it, life was a struggle. I was (and to some extent still am) almost always in pain, especially in my legs. I was almost constantly bullied school which made me terribly self-conscious and lonely. By the time I was in high school, my self-esteem was virtually non-existent. I have struggled with anxiety and depression. Truly, the only place I really felt safe was at home (or Church, but that’s another story!).
Having said that, I am not going to pretend that life with cerebral palsy was (or is) that hard, either. I was blessed with a crazy, loud, and close family with lots of aunts, uncles, and cousins! My parents gave their all to us, and to me. They are the ones who dragged me to all the doctors appointments. My mom had to deal with my screams and resistance to the eye patch and exercises I had to do. Best of all, they didn’t treat me any differently than my sister and brother. I got in trouble and they put up with my *very* stubborn streak (I prefer the term persistent)! They made a good life for my siblings and me. I AM normal and I WAS normal to them. It didn’t matter to them that I walked funny or had no balance or couldn’t see well or any other issue I had. I was me and that was enough. And, although I didn’t have a lot of friends, the ones I did have were GOOD friends, and I am still friends with them to this day.
And guess what? I am stronger and better for having cerebral palsy. I have the faith in God that I have now because of it. Cerebral Palsy has made me who I am today, and that’s a good thing!
First of all, like I said at the beginning, March is National Cerebral Palsy Awareness Month. I want to bring awareness to CP, not just because I have it, but because it is important. Everyone wants to be “known” or “seen” for who they are and not what the stereotypes or what misguided perceptions say they should be. People with CP are no different. Well, I can’t speak for everyone who has cerebral palsy but I know what I believe to be true.
Secondly, I wrote this for YOU. I want to encourage you. If you are going through struggles, no matter what they are, you can and will get through it. If I can, you can. I have come out of my struggles a better and stronger person and you will too. There is no doubt about it. Trust in God and trust in yourself!
Never forget: YOU matter. YOU are necessary. YOU are a gift. Don’t let anyone ever tell you differently.
UPDATE A great resource: Cerebral Palsy Guidance. I was recently contacted by the editor of this site and as soon as I started reading it I knew I wanted to share it. It has tons of great information plus personal stories that are so inspiring! Definitely check out this website. 🙂
Another great resource is the Cerebral Palsy Group. In particular, it gives a good overview of the history of cerebral palsy and causes of cerebral palsy.
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