Early years and medical treatment

I have lots of other memories of that time and of my early years at primary school but none that really relate to being disabled – most are of being really happy and having lots of friends. Its probably worth mentioning that I don’t think I realised I was different at the time and I’m not sure that my friends did either – young children don’t question they just accept. I think this can explain why when they were younger my brother and sister were a lot more willing and co-operative then they are now, although they are both getting better again. They probably just thought everyone had a disabled sister and its only when they realised that no they didn’t they began to have problems with my cp, mainly I suspect because they were embarrassed by it. I do have a memory of going somewhere when Soph was little and she was in the pram and I was in my wheelchair and Ben throwing a complete tantrum because he had to walk.

I used to have to go to walking classes with other disabled kids my age and we used to do physio and play games and other fun things – in attempt to improve our walking patterns. However, I don’t think I realised that others didn’t – I just thought that everyone did different after school activities and that I was the only one of my friends who went to walking classes and that they could come too if they wanted to. I’m not sure it ever really occurred to me that I was different in a big kinda it just hit me with a bang way it just gradually dawned on me as I was old enough and mature enough to deal with it. but in a way I’m still dealing with that fact now – most of the time I’m fine with it but occasionally I can just have a little twinge of oh I’m different I hate it. I’m not too sure that makes sense and its all kinda out of the order it happened but hey I’m writing this for me and no one else.

When I was five I had another operation. I had my calf muscles released and I also had something called alcohol blocks. These were given because some of the muscles in my legs were working too hard and somewhere not working enough because of this. They meant that the muscles which were working too hard for paralysed to an extent so that the muscles that weren’t working enough could be encouraged to work as they should. Unfortunately I deteriorated slightly as the weaker muscles were not strong enough and couldn’t work well enough.

Every so often I used to have both of my legs put into plaster casts for a few weeks. The theory behind this was that if my leg was held in the right position the muscles would learn it and I should improve. Usually this would be for two weeks at a time and then I would have to wear splints at night to continue it. however I remember when I was about 6 being told I would have to be in a cast for about 2 months. I was devastated and burst into tears – the swimming pool at my school had just been opened for the summer and it meant I would never get to use it that year. I was (and still am in a way) a little water baby and would’ve swum every day if I’d been given the chance so you can imagine how upset I was. In another example of how much of a star my consultant is he agreed to let me put off the treatment by 10 days to give me a chance to use the pool and then after four weeks when I went for a check up my physio thought that I wasn’t doing too well, mainly because I was miserable. Bless him he immediately agreed that it was just as important for me to be happy as my walking was and let me finish the treatment immediately.

I had the last of the operations I have had so far when I was 7 – a second release on my calf muscles and also a release on my hamstring muscles. This was not the operation they had planned for me though. What had been discussed was (this isn’t a very technical description but…) breaking the bones in my legs and rotating them so that instead of pointing inwards as they do now they would be how they would be in a so called “normal” person and then pinning the bones in the right position. This was rejected by the doctors for reasons I am not sure about. When I was 15 my parents spent a year agonising over this choice again – the doctors said they would do whatever my parents wanted. However, tests had shown that it had a 50% chance of making me better and a 50% chance of making me worse and whatever happened this would mean a 3 month recovery period at least – a term off school when I was just starting my GCSE’s. So this was rejected again and was something I immediately rejected without giving much thought or worry too when I was given the choice a year later when I was 16 by Mr Benson because it was now my choice.

My general thoughts on the matter were my usual – I’m happy I can cope at this level. Even though I was sure that I would cope whatever happened I realised that it would be an emotional hell for me to go through (particularly if it went wrong) and I just didn’t think that it was worth the sacrifices that would have to be made be me and my entire family just for a one in two chance of getting better. Whenever people ask me if I have to have any more treatment in terms of surgery etc. I always tell them that I might but that at the moment I was offered some but turned it down, but that in the future I may need more treatment or I may decide to seek the treatment I originally refused. They always say that they think they would’ve had the treatment but then when they hear the odds I had for it making me better or worse and the recovery period that was projected for me they usually say they don’t know what they would’ve done. That’s the thing everyone thinks being in a wheelchair is awful and you should jump at the chance to get out of the damn thing, but its not that bad there are some advantages. I try to bear in mind when I think “should’ve had the surgery…” that it wouldn’t have been a guaranteed cure, it never would’ve cured me completely and it wouldn’t have been a quick cure.

I stayed at primary school doing well, missing some assemblies to do physio with an LSA. But other then that the only real difference was I had LSA help in some classes and I used a laptop computer to type most things as I found writing tiring and difficult. This meant that instead of handwriting classes with everyone else I was given things to practice typing into my computer and then after a few years they found someone who came into the school especially to teach me to type. This made me feel good because they took the time to think about me and also because my friends were jealous!! I am very grateful that they did this for me because it meant that I had more independence as I didn’t need someone to write for me all the time – there were classes I could manage without any help

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