My personal experiences of Cerebral Palsy

Melissa Parker is 20 and, as a result of a break from education due to surgery, is undertaking A-levels with hopes of earning a place on a law programme in 2013.

I first became interested in writing about my personal experiences of Cerebral Palsy when I read Andrea Dworkin’s article “Through the Pain Barrier” – it provided a forthright, fiercely earnest and human account of pain, disability and aging.

Being “normal”

It was also overwhelming because, having had Cerebral Palsy all of my life, it is difficult to remember that my experiences are not “normal.” They do not conform to other people’s experiences and perceptions. It was a moment of clarity, transparency, lucidity to remember certain times in my life that have been shaded, positively or negatively, by experiences such as these.

As a child I grew up with a mother who was determined that I would be “normal”, I did not in point of fact think there was anything out of the ordinary about myself until I was nine, and why would I? I had most of the customary childhood experiences: I played Mary and hit Joseph on the head, with a providentially, plastic baby Jesus. I would amuse myself by wearing toy high heels on my hands rather than on my feet, I would spend most of my early years as a quintessential tomboy complete with knee-length football shirt, which my mother had bought me as an Easter present, and quite naively as I then thought, assumed I would allow her to return it purely because it was too big. There were moments when my disability would affect existence, though I was apathetic about it, after all I knew and, as I realised when I read the aforementioned article now know no different. I had camouflage splints and a wheelchair which was yellow with red stripes. As I have grown those things have altered and as a consequence physically, emotionally and socially so have I.

I think numerous people automatically assume that disabled children are naturally angelic and my mother has always told me she did not know what to expect of a child diagnosed with Cerebral Palsy. However, what she got was, in all probability, the child most unlike the child she imagined, in terms of temperament, determined, stubborn and inquisitive. I would most often question all and make observations to an, in general, taken aback audience.

Side-effects of surgery

When I had the second surgery, I did have hallucinations I was an axe murderer, vivid dreams where, I admit, my wickedness took on an atmosphere akin to a Robert Louis Stevenson novel. This was as a result of potent painkillers and was a contributing factor in my decision to stop using them soon afterward. I refer to that period as my “Yellow Submarine” phase. Looking back I was a sixteen-year-old girl who had been pumped full of drugs it is no wonder they effected me so significantly furthermore it is also accurate to say that realism is difficult when your perceptions are so altered.

I remember a few things exceedingly, and sometimes dreadfully, distinctly so much is ambiguous and might not have happened, I remember most evidently the one split second of regaining consciousness, an overwhelming understanding that it was going to be arduous, laborious and exhausting nevertheless I was going to get on with it. This feeling occurred after both surgeries it was just, I believe, an innate knowledge that I had to.

I am fortunate to have had my mother as my supporter, the stoic woman I know, from the youngest of ages I wanted to emulate that strength, she has inspired me to fight regardless.

I was recently told that my disability made me determined to succeed I was initially offended by the remark it was so indifferent, listless. I can, after all imagine that any disability gives people determination, fortitude and resolve.

Botulinum toxin A

The one memory I will always retain, etched into my remembrance indelibly, is my experience of Botulinum toxin A, also known as Botox, anyone is considering trying it to treat Cerebral Palsy should not be put off by the following narrative, I am aware that it has helped many. However as I writing about my understanding of the events to inform others I believe it is important to give a sincere account of my experience. I was a young child when I had my first, and only, treatment with Botulinum toxin A, it was not effective however it was a distressing experience. I recall the first sharp pain, just as evidently as I do my Winnie the Pooh backpack, I remember being held down as the others were injected into my legs and I recall, most vividly, wondering why my mother and god-mother, who were both present, did not intervene. I have been asked since whether the fact that the treatment was not effective contributed to my antipathy toward the experience. I do not know. I do know, however, that I am pleased I tried it. One day there may be something which alleviates Cerebral Palsy and it is that knowledge that makes experiences such as these worth it.

The experiences which have built what I refer to as ‘character’ have been numerous and thus far I have been exceedingly fortunate that my physical world has been, comparatively, unaffected however there are instances when one is aware of physical barriers, mobility lessens when pain is enhanced is a truth as I have acknowledged

The one emotion I felt through the years, especially as a teenager, is frustration. It has motivated me immensely; I believe the teenage years are the most arduous phase emotionally, which has made me consider writing something that will be, I hope; an earnest and human account. I recently read Ernest Hemingway’s A Farewell To Arms and was most conscious of the following quote: “The world breaks everyone, and afterward, some are strong at the broken places.” It sums up my views and beliefs about my own disability and experiences.