Cerebral Palsy Isn't 'One Size Fits All'
I am sure almost everyone has seen the claim on certain articles of clothing that “one size fits all.” While that is a nice thought, I think we know we are all different, especially in terms of body type. In honor of March being Cerebral Palsy Awareness Month, I think it’s important to discuss how every aspect of cerebral palsy affects each individual differently.
I 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 try to understand me. Understanding is all I have ever wanted out of life for a while now. While these comments are harmless and merely a way to make connections, I feel like once many people have met someone with cerebral palsy, they assume we are all alike and affected in the same way.
This assumption could not be further from the truth. In my case, I have quadriplegic spastic cerebral palsy. This means all my limbs are affected. It is hard for me to move around without the help of a wheelchair. I used to crawl around so I did not have to miss out on any sort of opportunity that involved mobility in any fashion. I also have spastic muscles. 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. Spastic muscles are the most annoying or unfavorable aspect of my disability, because they cause me more pain in addition to my other chronic issues. Spasticity makes movement even more challenging than it was to begin with.
I am also very tired. All the time. It doesn’t matter if I only got four hours of sleep or 10. To my body, apparently there is 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 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 to exist.
Speaking of exhausting things, when I was younger, I was sent to physical and occupational therapy 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. I have gone to therapy recently, and even the therapist I was seeing admitted my body is so worn down and overly spastic that therapy would not 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, perhaps you can imagine the toll it takes on our bodies. 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. In my experience the key to fighting these problems is finding something you really enjoy and sticking to a daily routine. Routines can allow for a sense of freedom and normalcy.
Attitude also 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 through the years that it is helpful to be as 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.
Getty image by Victor Huang.