My Disability Isn’t One Size Fits All

I am sure almost everyone has seen the claim that “one size fits all” on certain articles of clothing. While that is a nice thought and incentive, I think we all know that we are all different, especially in terms of body type. It turns out, in life, you’ll rarely find anything that’s truly one size fits all.

In honor of March being Cerebral Palsy awareness month, I thought I would write a piece about how every aspect of Cerebral Palsy affects each individual differently. I personally have come across many people who ask me if I have Cerebral Palsy, and then when I say yes, they say they can somewhat relate to me as their family member has the same disability. There is, of course, a sense of comfort there knowing that I am not alone, and it makes me happy when people in the general population try to understand me. Understanding is all I have wanted out of life for a while now.

While harmless and just merely a way to link connections, I assume that once the general population feels like they have met someone with Cerebral Palsy, they then have met the entire swath of us, and therefore think that we are all alike and affected in the same way.

This assumption could not be further from the truth. In my case, I have quadraplegic spastic Cerebral Palsy. This means that all of my limbs are affected. As stated by my case, it is hard for me to move around without the help of a wheelchair. If I am being completely honest, I used to crawl around so that I did not have to miss out on any sort of opportunity that involved mobility in any fashion.

Also as stated in my case, I have spastic muscles. To explain it in sort of a watered down kind of manner, my muscles never stop contracting and releasing. This causes me to feel bunched up in a sense, and it makes any sort of movement extremely difficult. In my opinion, the spastic muscles are the most annoying or unfavorable aspect of my disability. I say this because it causes me more pain in addition to my other chronic issues that I am already dealing with, so it makes movement even more challenging than it was to begin with.

I am also very tired. All of the time. It doesn’t matter if I only got four hours of sleep or 10. To my body, there is apparently no difference. This is because Cerebral Palsy uses up and expends so much energy. It is said that individuals affected by Cerebral Palsy use three to five times more energy when compared to an able bodied person. So when I take a nap, I do it not because I am lazy. I do it because my body demands it, and I am completely and utterly exhausted. It takes an awful lot of work on my part in order for me to exist.

Speaking of exhausting things, when I was younger, I was sent to therapy, both physical and occupational, in hopes that it would help make my life a bit easier. While it did help me become and remain independent, it also wore me out. I am thankful for my therapists at the time for trying to help me grow and evolve, but I will be honest and say I was not in the least bit sad when my parents decided I no longer had to attend. We found that eventually it was wearing me down more than helping. Honestly, I have gone to therapy in present day, and even the therapist I was seeing admitted that my body was so worn down and overly spastic that therapy would not really be as effective as it used to be.

I am 34 years old. I will be 35 on the last day of June. Growing older with Cerebral Palsy is certainly an interesting process. It can be a solitary and isolating experience because not many people understand what it entails. If you can imagine living with all of your muscles bunched up constantly, I am almost certain you can imagine the toll it takes on our bodies overall. I know everyone is different and affected differently, but for me, residual effects have taken control of my body and leave me feeling hopeless sometimes. My residual problems include osteoarthritis, knee tendonitis, and hip dysplasia. I will not lie to you all. Dealing with all of these issues on top of my CP is nervous breakdown-worthy, and believe me when I tell you I have had my fair share. When you cannot work because of the issues, it also makes life more isolating and lonely. Thankfully, I have writing and other activities to fill my time when I am at home, but I also realize not everyone is as fortunate. Being bored and having no stimulation can also be a problem when you are affected by Cerebral Palsy. It can lead to depression and anxiety. I guess you could say the key to fighting these problems is finding something that you really enjoy and sticking to a daily routine. Routines definitely allow for a sense of freedom and normalcy.

Attitude plays a big part in getting through my own personal journey. I made a vow to myself to be honest about how I am feeling and allow my emotions to speak my truth. I have also learned throughout the years that it is helpful to be a positive as you can, because a disability and the life it affords you is not exactly something you can control. I honestly just try to make the best of it and keep rolling. It’s all I can do.