Cerebral Palsy

Hi friends!

As some of you may know by now, I have a neurological disability called Cerebral Palsy. March was Cerebral Palsy Awareness Month, and as the month comes to an end I wanted to leave you with some knowledge about Cerebral Palsy, as well as share my personal journey with learning how to deal with it over time.

So what is Cerebral Palsy? Cerebral Palsy (CP) is a congenial neurological disorder. It is usually caused by damage being done to a baby either in the womb or during birth. There are 5 major types of CP: monoplegia, diplegia, hemipligia, triplegia, and quadroplegia.

Someone with monoplegia usually feels symptoms in one limb. Someone with diplegia has symptoms in either the lower or upper half of their body. Someone with hemiplegia is affected on either the entire right or entire left side of their body. Triplegia refers to three limbs being affected by the CP. Lastly, quadroplegia refers to all four limbs being affected by the condition. These are all very different, but the symptoms that present themselves are usually pretty similar. Some of these symptoms include stiffness, lack of muscle control, balance and/or coordination issues, and fatigue. These are just a few examples, but of course there are many more. Cerebral Palsy varies from person to person, so no two people with the condition will experience it the same way.

The type of Cerebral Palsy that I have is called Ataxic Spastic Diplegia. Ataxic, or ataxia, means that that there is limited balance and coordination. Basically, I fall over a lot. Whoops. Anyway Diplegia refers to the limbs that are affected, which in this case are my legs. Actually my entire lower body from the middle of my torso down is affected. The Spastic part refers to the spasticity. That said, my CP is on the milder side. While there is no cure, one can work on managing symptoms to improve quality of life.

And that’s exactly what I do! I decided at some point that I wanted what my seemingly able-bodied peers had: a normal, working body. I didn’t know how I would do it, or if it were going to be physically possible, but I’m stubborn so I figured I’d try anyway. That desire never really changed, but it evolved into me wanting the convenience that the able-bodied life seemed to have.

The problem though was that I was starting off in a wheelchair. Yep, a wheelchair. I had almost no use of my legs at all. Around the time I’d turned 6 or 7, I think, I’d moved on to using a walker. I don’t remember that transition very well, but I know I wasn’t happy about it. The walker was clunky and loud and overall just unpleasant. So around the time I was 9 or 10, my doctor had suggested using forearm crutches. Lo and behold, I hated those too. But they gave me something I didn’t have before: speed. I’d always wanted to be fast, but my legs would get in the way. The crutches were fun because I could just hop and swing on them using my arms to propel me forward. Suddenly I was fast. I could play with my peers. I wasn’t as fast as they were, but boy could I move. The added benefit was that my upper body became super ripped because of all the shoulder hopping. It was like doing dips constantly.

This is around the time that I learned that I wanted more. I wanted to be able to do what the others could do. If I could learn to balance on crutches, why not do more? I don’t remember exactly when, but at some point I decided to try walking with just one crutch. Having balance issues made this very scary, and it took a long while to get used to it. But that one crutch life made navigating NYC a lot easier. I had a spare hand to carry things, I had an easier time going down subway steps, and I could catch myself more safely when I inevitably fell over. For a while, that was the life.

But in true Melissa fashion, I wanted more. I didn’t like how heavy the crutch was, and it was also clunky and annoying. So when I was about 22, I randomly decided to buy a cane. I had been working more on balance, and I figured that the switch wouldn’t be all that bad. It was terrifying, but it payed off. It got easier over time to trust my balance and it was much less clunky than crutches. The other fun thing about having a cane is that I get to buy fun and fashionable ones!

That brings us to now. I’m still using a cane, but I have days where I can walk without it. My drive to do more has led me to figuring out how to strengthen my legs in fun, new ways. I’ve taught myself how to run, learned to deadlift, and learned how to take pretty long falls off of a boulder wall without breaking myself somehow. I’m constantly looking for new ways to get better and stronger, and the journey only gets better.

All that to say that every person with Cerebral Palsy is on their own path, and going on their own journey. My stubborn personality, plus my love for independance and convenience, has helped me get much farther than I ever thought I could go. Ultimately I’m trying to have fun and push the bounderies as far as I can get away with.

Do you know someone with Cerebral Palsy? Do you have CP yourself? Let’s talk about it! Share your thoughts and experiences with me either email or Instagram messaging.