Tag: Cerebral Palsy

Children do the funniest things

Kids do the funniest things, don’t they?

I really admire children and the fact that they ask the questions their parents probably want to but are too afraid.

Often, when I bump into little ones in the street they’ll gaze at my walking frame in fascination, point to it and either ask me or the grown up they’re with what is and why I use it. Some of the time, the adult will tell the child to ask me for themselves when they notice that I’m grinning rather than looking irritated by their curiosity, but others get embarrassed and try and get them to walk away from me as fast as possible.

One day, much to my amusement, a toddler decided that they would use my old Kaye Walker frame Betsy as a climbing frame. If the youngster hadn’t been with an adult I would have probably been quite nervous. The adult kept trying to take the child way but he kept on coming back for another go. I just stayed very still and let them get it out of their system.  I don’t think they were old enough to know that it was wrong, and I suppose to someone who is only about two (or maybe less- I’m not good with ages)  that my walking frame probably does like a little like something that they would find in a park. It made me laugh. I’d never know a kid to do that before. The other grownup giggled nervously with me.

I’d always rather people ask me a question as long as they’re polite about the way they do it. I don’t mind people looking at the frame either. Martha is big and blue and not something a lot of people will see very often so it’s bound to catch your eye. It’s human nature especially when it comes to kids. It’s how they learn about anything in life so the issue of disability isn’t, and shouldn’t be, any different. If other adults want to know something I’m fine with that too. Chances are it won’t be the first time I’ve answered the exact same thing. How old the person is depends on what I tell them.. If it’s someone quite young who wants to know about my Cerebral Palsy I tell them that I’ve got poorly legs but don’t name my disability, and if it’s somebody older I tell them things in more detail

Once when I was very young a child walked right in front of me and asked very politely “Um, excuse me, but why have you got that?” his family looked horrified:

“Come on, it’s just like the one you’ve got a home” they scolded. I turned to them, assured them that it was okay and told him I had poorly legs. “Oh, ok then,” he said, happy enough and wondered away again. That was all it took.

Sometimes it gets a little awkward when I have to try and explain to them that being in a wheelchair isn’t as fun as it looks in their eyes , but I always try and balance it out by telling them that it comes in really handy if I’m going on a long visit so that I don’t have to try and find somewhere to sit.

Sometimes, being happy is enough

One day when I was out shopping I found myself sharing the aisle with an elderly couple. One of them spotted me trying to get passed before I needed to say excuse me:

“Just mind out,” the man said to the woman “there’s a little girl trying to get past on a walking frame,” They both stepped aside so I started to move past them, “isn’t it a shame?” the man remarked. I just smiled and nodded, not really sure how else to respond.

“But look, at least she’s happy” the woman pointed out. I scurried away so that I couldn’t hear the rest of the conversation. I get embarrassed sometimes when people talk about me, believe it or not.

They were right though, I am very happy. Why wouldn’t I be? I have a supportive family who love me and encourage me to push the boundaries every day.

I’ve had my Cerebral Palsy since birth and I can’t ever remember not using a walking frame of some kind, and as I’ve said before I consider myself really lucky. I accept my limitations and do my best to do as much for myself as I can. There once was a time as a kid I wished I was able-bodied, but that was a long time ago and I’ve never done it since.

My friends often ask if I’d let someone take the CP away just for a day and then things go back to the way they usually are for me. I don’t think I would. After all, I think I’d still do all the same activities I do already, but I’d probably be too busy thinking about how weird it would feel to me to enjoy it properly. As I was writing this post I sat thinking about all the things I would do and here’s what I came up with, in no particular order:

  1. Go dancing – I do this already. It may not be perfect, but not many people are. I dance anyway
  2. Cook for my family – I could technically do this now, there’d just be more options
  3. Go on rollercoasters – I’m too small to ride them anyway
  4. Run –while I’d love to go running properly and feel the wind in my face I think taking Martha to the top of a hill has the same effect. We always end up at the bottom far sooner than I intend us to be
  5. Ice Skate. I haven’t done this yet, but the man in this video proves it’s possible from a wheelchair I really should give it a go sometime.

While I can understand why people would want to take away their disabilities either for s short time or forever, personally I’m happy the way I am so I don’t feel the need to change things. For that, and so many other reasons, I do truly consider myself lucky.

The thing with laundry

When it comes to doing laundry, I have to get a little bit creative. Before I moved away from home my parents had always helped with it so it was a shock to the system when I had to do it for myself and I wasn’t entirely sure how I’d cope with it.

While I was at university I had help from an outside supportive living agency who would also assist me with my laundry, cooking, cleaning and shopping whenever I needed it so I know that it’s not something I’d ever have to  worry about too much if I ever did decide to live alone. Yet I hate to be defeated by anything (except my shoe laces – I gave up trying to tie those a long time ago) so I made the effort to find ways around washing my own clothes. I knew that I could always ask for help if it got too hard, but I wanted to be ready just in case there was ever a time I don’t have a choice, and so that I know I can do as much for myself as is physically possible.

Luckily I’d always managed to find somewhere to live where my bedroom had been on the ground floor so I didn’t have to fret about trying to get all my clothes downstairs to the washing machine because there was no way that I would have tried to carry the basket myself. Eventually I did manage to find a way around this problem though for if I ever want to give mum a hand at home where my bedroom is on the first floor and the washing machine isn’t. I have to get some plastic carrier bags (like the kind you get from the supermarket), fill them with whatever I’m planning on throwing in the washer, loop them around my wrist and go downstairs holding on to my handrails as normal. It usually takes three or four trips for me to gather a full load, but I get there in the end.

When my room was on the same floor as the kitchen at university I usually opted to do what I like to call the ‘crawl and push manoeuvre ‘ where I would get down on my knees on the floor and push whatever I had my clothes in along with me until I got them to where they needed to be. This took a while too but it was better than the alternative if I tried to carry it. When I would try to do this I would usually end up falling over (what a surprise) or I’d spill all my clothes all over the living room floor, neither of which are very good, especially not if the people you live with are around at the time and just so happen to see your unmentionables go flying across the room. My housemates were always really helpful and would help me if they were around though.

The difficulties don’t stop there. If for whatever reason I can’t use a dyer or my clothes need to be hung up on an airier before I can put them back in the wardrobe,  that takes me a fair amount of time too. I have to hold on to the airier for support while I put things onto it, which means that things often fall off again as fast as I can hang them there, so it takes ages (and a lot of mumbling to myself most of the time) to get everything to stay in place. The constant bending down to pick things up makes me quite tired too so I have to take a lot rest breaks too.

I used to use Betsy for extra drying space too if I wasn’t planning on going out anywhere. I haven’t had to do this with Martha yet, but I’m sure her time will come.

Why I prefer reading to sports

Anyone who knows me will tell you that I prefer reading to sports. I don’t know the offside rule, have no idea what the difference is between Rugby League and Rugby Union, and, even though my dad likes watching Wimbledon every year, I don’t know the first thing about tennis. This isn’t because I couldn’t play sport because of my Cerebral Palsy, it’s because I’ve yet to find something I enjoy so much that I’d choose doing that over spending my Sunday afternoons curled up with a Val McDermid novel and a cup of tea.

My parents always made sure that I knew the world of sport was open to me if I wanted it to be. My dad even sat me down and made me watch the athletics at the 1996 Paralympics on the TV when I was just five years old to show me what I could achieve if I wanted. “I’m not saying you have to do it” he said “I just want you to know that you could”.

Over the years I have tried to get on with many sports, and well, it just hasn’t happened. I decided that I hated football on the day I tried to join in with my friends and ended up tripping over the ball and falling flat on my face. Then, there was the time I tried to serve a ball in a game of tennis and fell over with the effort, and, as I’ve said before I can’t run.

Despite that, I do quite enjoy the odd game of cricket that my family used to play on holiday. I just sit in my wheelchair (it’s safer that way, trust me) and whack the ball as hard as I can to score as many runs as possible without moving until someone catches me out. It’s not the conventional way of playing but it’s my way nonetheless and I quite like that.

People often ask me if I’ve ever taken part in wheelchair basketball and the answer is no, I haven’t. The idea just doesn’t interest me (and I’m terrified of being hit in the face with the ball, truth be told) but I’d happily try any sport that caught my eye at least once. The hard part isn’t me trying something out, it’s selling the idea to me in a way that gets my attention in the first place that’s possibly the most difficult bit.

I do enjoy exercise; I just prefer the things that you don’t do in a team, so the only person I have to push and compete with is myself. I loved using the gym in high school and at university, I love going out for walks with Martha, and I can always be found on the dance floor at parties in my walking frame or wheelchair moving along to the music in any way I can. I even quite enjoy swimming even though I’m not very good. That, and I like being able to jump around in the water in a way that I can’t on land.

In the end though, I much prefer to leap into the world of a good book. I love being nosey at the other world’s that writers have created in their own head, I enjoy reading stories that I can relate to, be they fiction or none fiction, and I truly admire the way that a writer can make you feel so much emotion without ever having met you. For me, it’s hard for me to imagine loving any sport over the magic of a book, Cerebral Palsy or no Cerebral Palsy.

Lessons from my childhood

I only ever remember wishing that I didn’t have Cerebral Palsy once, and I was about five at the time.

It was summer and I was playing outside in the sunshine. At the time I was an only child because my sister hadn’t been born yet, so I’d become very good at using my imagination to make up my own games. That day I decided that I was going to practice running, not for any particular reason, I just felt like it.

I did a couple of laps going from the front garden to the one at the back of the house. I knew that I wasn’t technically doing it right, but I didn’t care. I was moving faster than I did when I walked and I wasn’t falling over. It felt good, and that was enough for me.

After a couple of laps I was starting to feel really proud of myself, it didn’t last long. As I came out of back garden round into the front again, there was another child who wasn’t from my street watching me over the fence. I didn’t know their name and I don’t think they knew mine.

“Ha, ha. You can’t run” the kid chanted, before galloping up and down the pavement to show me what I should have been doing it. I was heartbroken. She was right and I knew it. I’d known that I hadn’t been doing the same as the other child, but I’d been pretending that I was. I felt stupid and pathetic. My illusion had been shattered. I burst into tears and wondered back inside to find my mummy.

When I did I wailed to her about what had happened and declared that I wished I had normal legs like everyone else. My mum just stared at me and told to “never, ever say anything like that again,

“And anyway”, she carried on “you can run in your own little fashion, can’t you?”

For the second time that day I was left feeling deeply ashamed of myself, not because I couldn’t do something, but because I knew that I’d been ungrateful for everything that I could do that so many other people with Cerebral Palsy can’t. That day, I promised myself that I would never wish my disability away again, and I haven’t. Sure, there were other times in my childhood I got upset at not being able to dance like my friends could and stuff, but I think that’s probably quite normal for any kid sometimes, disabled or not. I spent the rest of my childhood telling people that I was proud to have a disability because it meant that someone else in the world didn’t have to. Now that I’m older I know that might not necessarily be the way things work, but it was how I liked to think of things at the time.

Despite my difficulties I still took part in all my primary school sports days on my walking frame alongside everyone else and managed to think about how I usually always came in last because it didn’t matter anymore. I decided not to take up running in the end, not because I couldn’t, but because I realised that I’d much rather bury my head in a book.

So far I’ve stayed true to my word. Yes, I have CP, that will never change, nor do I want it to. More on that later.