Cerebral palsy affects more than just my ability to balance. Below I have listed 17 facts about my cerebral palsy and how it impacts me and how I view the world. I chose the number 17 to represent the estimated 17 million people in the world who have cerebral palsy.
1. My cerebral palsy affects the right side of my body, especially my right leg. My disability was caused by a brain injury before birth, and for this reason will never be cured. My muscles are tighter than they should be and my right side is partially paralyzed. My CP also impacts my ability to understand verbal language. My disability touches other parts of me that might surprise you.
2. Cerebral palsy is the most common physical disability in youth in the world, but I still feel incredibly isolated. I yearn to meet someone else who has the same type of CP as I do. Growing up, no one else in my life had my disability, or even a physical disability for that matter.
3. No, it is not contagious. Yes, I have had adults ask me this question before. (Yes, schools need to teach about disabilities like CP!)
4. CP is not a progressive disability in the sense that my brain will not get any more injured as I age. But the detrimental effects on my muscles do get worse as I strain them and compensate for my paralysis more and more. Tasks that used to be fairly easy for me are starting to cause me more pain and difficulty. I fear how my disability will weaken me as I get older, and I worry one day it will hurt too much for me to walk.
5. I do not hate all forms of physical activity. In fact, one of my favorite things to do is walk. I love walking outside and through parks – sometimes even running – and just losing myself in my thoughts. Walking often hurts me, but that does not mean I do not gain immense joy from it.
6. I am a recent graduate of the University of Michigan. I even graduated with high honors. But I was also in a special education preschool for a few years. School used to be very, very hard for me. And even in college it was still quite hard. It took me about double the time to do any reading or paper as it would for an average, able-bodied peer. Our society often measures success by how fast you can complete a task, so it took time for me to redefine what success means to me and to forgive myself for not measuring up to that type of expected success.
7. I cannot drive. I often tell people that this is because you need to use your right foot to drive – and that is the appendage of my body most affected by my disability. While this is true, there is more to it. It also is hard for my brain to multitask and process everything that is needed to drive. It is very hard for me to talk about the mental aspects of my disability – how it impacts the way I think and process information – and that is something I am still working on.
8. I must advocate for myself. When I was in high school, I developed tendonitis in my strongest leg because I was given such intense workout routines in gym class. My teacher insisted I “try my best” and didn’t believe me when I said I could not complete the exercises. He said only people who try would get an A. I was desperate to get that A, so I tried despite my best judgment and even though it went against the accommodations I received and what my doctor advised. I was in a wheelchair for two days and could not use stairs for a month following the injury. That experience taught me the very severe repercussions that can come from not advocating for myself.
9. Because of my disability, I understand the cycle of ability status. I understand that we all start life completely dependent on others as babies, and we generally end life in this same capacity. As we grow old, we slowly lose our ability to be independent. Eventually, we are all disabled. A lot of folks don’t recognize this, and the elderly folks in our society often do not get the help they deserve for this reason. Many people with my type of CP get arthritis by their mid-30s. I am forced to confront the premature aging of my bones already, and to accept that my body will not always be as strong as it is now. That is something we all have to one day come to terms with — it is just sooner for me.
10. I worry about finding relationships. When I was around 4 years old, I told my mother that I would never have a wedding. When she asked me why not, I responded, “I don’t think anyone would ever want a wife with cerebral palsy.” I was only 4 and had somehow already received the implicit message that disabled people don’t often find love. And I would be lying if I said I do not still have these insecurities.
11. My disability is invisible in the sense that a stranger cannot tell I have a disability just by looking at me. I am often grateful for this, but sometimes it makes it harder to receive the accommodations I need because people assume I am completely able-bodied. For example, when I am on a bus and sitting, people have asked me to stand to give them my seat, even though I am technically entitled to the seat through the Americans With Disabilities Act. I often do not have the confidence to voice this to strangers, though.
12. When I was in elementary school, I often could not understand what was said in class or by my friends because my oral comprehension capabilities were so limited. I copied my best friend’s actions in class to keep up. It was isolating, and it still can be. I often daydreamed since I couldn’t understand what people were saying. I still daydream a lot when I can’t follow what is being said, which happens more often than people think. I think this is part of why I love reading and writing so much — because I can communicate at my own pace.
13. I grew up believing in miracles. My doctors and therapists told my parents I would most likely never speak, walk or be literate. When I excelled in all of these activities, I realized my body had in many ways defied medical science. I feel incredibly grateful to have grown up believing in myself and in miracles this much. As much as I could hate my disability sometimes, I felt pride in my body for overcoming it. I felt strong more than I felt weak.
14. I am not proud of my disability like I am of my sexuality. In fact, there are some days I really hate it and hate my body for housing it. Sometimes I am ashamed of it and feel complete disgust towards it. I resent it for what I fear it could limit me from experiencing. I view my disability more as a virus attacking my body rather than as a part of myself and my muscles. I think I separate my disability and my body this way so I can limit how often I direct that hatred towards myself.
15. I love my disability for showing me the kindness in humanity and for forcing me to be dependent on others. I rely on others to drive me, to help me open containers to eat and to do many other day-to-day tasks. I find this interdependency very beautiful and appreciate that it allows me to see how kind others can be. It also forces me to redefine what it means to be strong and what it means to be weak. While our society generally labels asking for help as a sign of weakness, I view it as requiring immense strength. I truly believe that if everyone else had to be this dependent on others, we would live in a better world. Instead of dependency being seen as a weakness, it could be seen as a strength.
16. If I had the option to wake up tomorrow and no longer have cerebral palsy, I would take it in a heart beat.
17. If I had the option to go back in time and never be born with cerebral palsy, I would not do it.
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Thinkstock image by Lolostock.