Cerebral Palsy And Me

I may not post this anywhere. I will probably rewrite it over and over too because this is nothing I am used to writing about.

This post is far more personal and nothing to do with music, so bear with me while I collect my thoughts.

The reason why I want to post this is so that these subjects are not so taboo. It should be easy to talk about, but instead I am sitting here feeling almost apologetic, like nobody would be interested… Maybe that is the case, but if not, read on.

I have Spastic Hemiplegia Cerebral Palsy that affects the left side of my body. I’ve had it all my life and it will stay with me for the rest of it and that is fine. It will not worsen over time; the severity will only stay the same and that is something I should be very grateful for. I am grateful for the fact that I can walk, talk and be very independent. I can look after myself, I can socialise and make friends easily, I can do most things that any "average" 18-year-old can do. Only, sometimes, that’s actually a burden.

Forgive me when I say that sometimes I wish that my condition was slightly more severe purely for the fact that with more severity, there is more help. People are more likely to listen when they can see the effects Cerebral Palsy has on your life. They can see if you need help when you’re wheelchair bound. They can sympathise with the pain and find medication to help ease pain or spasms. But instead, as a functioning teenager, or even as a child, I have been to appointment after appointment asking for help and getting nowhere.

Don’t get me wrong. I praise the NHS for everything they do and everything they have helped with, but sometimes I feel as though I’m never being listened to. All my life I have been instructed to stretch and participate in exercise on a regular basis. I have been given regimes to ensure I can stretch at every given opportunity: when I walk up the stairs, when I clean my teeth and so on. And, I admit, as a stubborn child who wanted so badly to be "normal," I would often resent the stretches and never be on board with the help I was given.

Most of the time, my therapy sessions consisted of taking measurements of my range in my leg and then seeing how much I had "improved." This would be repeated every so often — maybe every couple of months — and I would still feel as though nothing had changed.

As a young child, I would wear splints at night time so my leg could be stretched but this soon had to stop for fear of lack of blood in my feet, thought to be another symptom of my condition. Every year, I would wear a cast on my leg for two weeks at a time so again, my muscles could be stretched. I made the decision to stop this once I reached secondary school because I refused to stick out like a sore thumb amongst my peers. Even as a primary school student, I remember feeling so worried about what people thought as I hopped around the playground. I couldn’t play in the woods or sit on the wet grass in case I got my plaster cast wet. I had to sleep on the floor as I couldn’t climb into my bunk bed. I could not have a bath or a sufficient shower so I had to wash from the sink. Every year, this same burden was put on me for the sake of stretching my muscles.

As much as I moan, I am very thankful for all the treatment I have received but because the effects of the treatment never lasted more than a few weeks after actually wearing the cast, I felt defeated after going through so much. It seems like such a little thing, but I definitely struggled through these times. One day we had an art day at school where every lesson revolved around a different art activity. One of those was outside on the field where there was paper on the floor and buckets filled with paint, ready for us to dip our feet in so we could run over the paper. I had my cast on and was devastated that I couldn’t join in. I will always remember when my teacher, Mr. Smith, held my hand so that I could paint with just my right foot. I can’t hop very well because my balance is abysmal, but he helped me and although I felt so pleased that I was able to be included, I was also so embarrassed and ashamed that I needed help — that I was different.

Luckily, I have not encountered tremendous amounts of bullying throughout my life. Some people would make nasty comments about my disability and incapability, alongside my weight and other things that seemed slightly out of control. As I have gotten older and found it easier to talk about, my friends and I usually make my disability more of a joke. To be fair, it was only recently when I actually labelled myself as "disabled" because I felt it made life easier. To be able to say that to somebody if I am struggling with something in particular is better than suffering in silence because I am too embarrassed. Thankfully, though, I have never let the label define me. I’d only like to think it has helped me. I have a wonderful group of friends around me that have never let my Cerebral Palsy get in the way. They never mention in. They never talk to me differently or change plans to suit needs. Everything is very "normal" and I like it like that. Although sometimes when I’m finding it hard, I would like for them to understand more, but because it’s something I’ve never had to explain, I guess they don’t have access to the facts.

But I think this is one of the reasons that I wanted to write this post. I want people to be aware of the effects this condition has on not only me, but so many other people. Whether they have it as mildly as I do or not, Cerebral Palsy is present and seems to be getting far more present in my life.

Maybe as I write this, I will come to terms with the fact that it is very much a growing presence in my life. One that I refuse to define me, but one that I know will be with me forever. As stated before, the actual brain damage can never progress and get worse, and nor can it get better…

To put it bluntly, I am fed up with it. Sometimes it really does get me down but I hate to moan and bring people down with me. Although I am getting far more vocal when I am suffering, knowing nobody has the power to take it away is very disheartening.

Something that sparked this post was my recent hospital visit to see a neurologist. It was years since I had last seen a neurologist and after trying to seek help once again at some point last year, I was referred to see them again… But this time, it wasn’t pleasant. They ran the same old tests they always do to tell me the same thing they always do only now, it seemed to be told to me in a harsher manner. Maybe now that I’m older, they don’t need to "beat around the bush," they can tell me that this is all in my hands, that it’s never going to go away, and I must help myself. And yes. I do help myself, or at least I try very hard to. A lot of the time however, I feel defeated by the condition even though I would never admit that to somebody. Sometimes when I am in pain, the last thing I want to do is do a workout even though it’s supposed to be the best thing for my body. I hate struggling to sleep because my whole body is in a dull ache, or when it hurts to breathe because my chest and shoulders move up and down as I inhale.

I sort of hate myself for writing this because it sounds so dramatic. Anyone who knows me may think I am making it up. I don’t know. But I hate being beaten. I hate the fact that I cannot play guitar and progress with my music in that way because of the physical strains and pain it takes to move my hands to those positions. It’s so discouraging when I play piano because I play mostly from muscle memory so if ever I was told to learn something, it would take me twice as long to tell my hands what to do. I hate the fact that I am constantly fidgeting to get comfortable or to stop pins and needles. I hate the fact I cannot drive far without my legs seizing up and going numb. I hate the fact that some days I find it so hard to just put one foot in front of the other — it takes so much thought, I can almost hear my brain telling my legs what to do. I hate the pain I feel because my toes are constantly clenched and my left hand is always in a fist. I hate the tension that sits in my shoulders and runs down my arm. I hate the struggle of carrying bags and the day after when my whole body is rock hard and tense.

And… I particularly hate the effect it has on my self-esteem. I often tell myself that if I didn’t have Cerebral Palsy, I would never feel so insecure as I wouldn’t have a limp, I’d be able to exercise in a more efficient way to lose weight. I’d have better posture and hold myself better… Life would be easier. But no, I shouldn’t say that because it’s not going anywhere, I have to find a way to overcome the insecurities, but they don’t teach you how to do that at a neurology appointment.

What bothers me the most is how it holds me back when it comes to music. Anyone who knows me or has read other posts will know that I’ve been studying music for about three years now and within in that, I have to network, I have to perform and show myself. In general, I have overcome nerves when it comes to singing in front of people, but my stage presence somewhat lacks because I can feel myself saying “You’re stood funny,” “Don’t dance, you’ll look stupid,” “If you head bang, you’re likely to fall over,” etc., etc. It feels like I can’t enjoy myself or be the person I want to be when I am performing with a band. I can only stand clutching the mic, standing on one foot, slightly bobbing to the music. Unfortunately, that won’t get me anywhere in most respects when it comes to the industry and catching people’s attention. Things are based on image and unfortunately in this society, Cerebral Palsy is not part of that image.

I don’t mean to be negative but lately, I have found all of this quite hard to deal with. It infuriates me when it gets in the way of my life. I hate being defeated but I have felt very much defeated by my disability. I almost feel ashamed because people have it so much worse than I do and they must try so hard to keep a positive mindset. I refuse to have Cerebral Palsy play on my mind far more than it used to. I want to overcome the barriers that I now seem to be facing. After all, it’s just a part of me that makes me stronger. It’s just one more thing that I need to deal with.

I could end this post with some sort of motivational speech, but I don’t know if that’s appropriate. Thank you if you got to the end of this, I have definitely expressed some thoughts that I wouldn’t usually admit to anyone. Then again, things like this should be able to be discussed without any shame or embarrassment, so maybe it’s a step forward.