I find it hard to say whether I have mild or severe cerebral palsy, because my condition affects my entire life.
This article originally appeared in Rebel Magazine.
When I was born, I was declared dead for 26 minutes. During that time, I received negligent care by the doctors, which resulted in brain damage that in turn caused cerebral palsy. Broken down to the most basic explanation, cerebral palsy is a neurological condition that affects movement and posture. People who have cerebral palsy might not be able to perform basic tasks like walking, talking or eating.
The severity of cerebral palsy ranges from mild to severe. Although I personally find it hard to say whether I have mild or severe cerebral palsy because my condition affects my entire life, it could be said that I have been fortunate because I can walk, with a limp, talk, with a slur, and eat, with only a few spills. My hands shake and I have problems performing fine motor skills. I have less balance than most people and my legs are not as strong as those of an able-bodied person.
However, this perceived ‘good fortune’ has not been due to luck as much as to a determination to be the best I can be—an attitude that was encouraged and nurtured by my family.
From early on, my parents knew I would face many challenges, ranging from small tasks, such as dressing myself, to larger ones, like getting a job when I was older. My parents had excellent foresight and instead of just planning for the next day, they planned for 20 years down the road. My parents worked on every aspect of my development. My dad did physiotherapy exercises with me every night, and as a result, my speech was quite advanced by the time I went to school. My parents wanted to make me as physically and mentally strong as possible.
Being a parent is difficult enough. When you add on the unique set of circumstances I faced, my parent’s job become that much more intense. Fortunately for me, they had a great game plan.
I believe raising a disabled child is like eating an elephant. I know that sounds strange, but if you try to eat an entire elephant in one go you won’t be able to do it. More than likely, you’ll become overwhelmed and end up with an aching jaw. However, if you eat an elephant piece by piece, the once impossible task becomes much easier. For my parents and I, each piece was a small achievement and after a while all of the small achievements added up to bigger ones, and my life began to take shape.
As a disabled person, small achievements mean just as much as big ones. There have been countless times when I’ve had to eat the elephant piece by piece, although I’m tempted to dive right in. For example, when I tried shaving for the first time, I nearly cut off my nose. There was blood everywhere! In the end, the only way I learned how to shave was by breaking the process down. My hands shake more when I’m hungry, so to lessen the chance of a blood bath I would always shave on a full stomach. I also had to teach my hands to perform a task in a way that they weren’t used to. I trained my arms and hands to position the razor in a way that would allow me to shave against the grain. This was not an easy task, nor was it painless. For a while it seemed like I was cutting myself every time. But after a less than smooth training period, I negotiated these tricky waters to an extent where I was able to shave in a blood-free manner.
Living with cerebral palsy has led to other questions like, “How does a person with shaky hands cope with buttoned clothing?” or “How does a person who’s legs are affected by cerebral palsy drive a car?” With difficulty. But with my steadfast determination and a mind-set of adaptability, I was able to find a way to overcome these challenges. I circumvented difficult buttons by rolling my sleeves up and I learned how to drive a car by using hand controls.
My body has developed to conquer these challenges much like the evolution of a giraffe’s neck, which expanded over time so that they could reach the leaves of tall trees. Putting my thumb over the top of a tap to steady my hand when I fill a glass of water is very natural to me. These unique approaches to tasks make me who I am, and because the small achievements still mean just as much to me at 30 as they did when I was 3, I celebrate them.
By logic I really should be dead. The doctors definitely thought so when they said I’d likely only live until age 16. And for this reason, I feel blessed with the opportunity to live life to the fullest. This doesn’t mean I go out every day trying to push the limits and do something reckless, but I do appreciate the experiences I have. I can get down about life, but never about my disability. Life is to be embraced fully, and if a task does overwhelm me, I pull out my metaphorical knife and fork and begin eating that elephant, piece by piece.
Stuart Maloney is the author of 26: A Behind-the-Scenes Tour of Life with Cerebral Palsy. The book is available for purchase at Amazon.com, BarnesandNoble.com and AuthorHouse.com.
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Photo credit: Flickr / PaulEisenburg