In need of some TLC

My Nimbo Frame Martha
My Nimbo Frame Martha

Well, I think that my Nimbo walking frame Martha could be in need of a little TLC if our little trip out last week is anything to go by. We’ve had quite a bit of rain lately and now her seat doesn’t seem to be sliding up and down nearly as well as it was doing. In fact, at one point I popped the seat down while I was waiting to meet a friend, and when my pal arrived I found that I couldn’t tug it back into an upright position again. This hadn’t happened to me before so I was a little bit worried because when the seat is down it takes up most of the space in the centre of the frame. This makes walking slightly more uncomfortable and harder than usual. Thankfully, my mate must have had her Weetabix that morning because she did it for me. I’m not sure what I’d have done if I’d been on my own though. At least it should be fairly easy to sort out.

I like to think that I take pretty good care of my equipment that I get from the hospital. Yes, it’s always well-used by the time I give it back but there’s not very much I can do about that. I use it every day so it would be virtually impossible for there to be no signs of general wear and tear. I store it well and get it serviced when I need to. On the whole I’d say that I probably get my wheelchair looked at once a year, and I get a physiotherapist to look at my frame to see if there are an obvious problems that need addressing each time I start a new cycle of appointments.

Lately I’ve noticed that whenever I try to walk uphill, my frame sometimes makes a noise that I can only describe as a cross between a wheeze and a squeak. I’m hoping this is down to the wet weather.  I guess I just need to wait for a fine day so that I can go outside with the oil/WD40 can and hope that that should make Martha happier.

Finding a hobby

Over the years I’ve had many different hobbies. As a kid I was in the Brownies and Girl Guides and did the odd bit of horse riding, but it was in the last two years of school that I discovered I really enjoyed doing drama.

I chose to study the subject almost on a whim. I’d always loved doing the annual Christmas play when I was at primary school and each year I would come away from my family visit to the pantomime wishing that I could have a go too. So, while I was choosing my exam options I decided that I would choose to do something purely for the enjoyment, as well as some of the things that would help me start a career in the media.

As it turned out, I did well in the subject, far better than I ever could have hoped. All the plays and performances that my class I put on in our drama studio I would try and do without either my walking frame or my wheelchair because there was no stage as such, just a flat, open plan floor. I’d hold on to walls and my classmates where I needed to, but for the most part, I could cope.

I decided that I’d carry this on a university and joined the Drama Society within the first week of term. I was nervous at first meeting new people. In fact, I almost chickened out and didn’t go to the first meeting because I couldn’t get there on my own and was too shy to ask if someone would be able to help me. In the end after some encouragement from others around me I made the call and was so very glad that I did because it turned out to be one of the best things I have ever done.

Everyone was far more hepful than I could have ever asked for, walking me to and from the meetings, socials and rehearsals. When I performed in plays I used my walking frame and a wheelchair and that was never a problem. I did my bit as Lady Barcknell in our performance of The Importance of Being Earnest by Oscar Wilde from my wheelchair but stood up at the end of the show. Most of the other parts I played standing up in walker and I even got to take part in a panto like I’d always wanted to do as a child.

If I was too busy to devote enough time to actually be in the shows themselves I found that I could still help out taking tickets on the door and selling refreshments so there was always something that I could do within the society one way or another.

Many of the people I met throughout my three years as a member of the group will probably never realise how much their friendship and support meant to me, and still does. They helped me in more ways than I think they could ever realise. I learned a lot from joining the society including that I should never let the Cerebral Palsy be an excuse for me not trying something new. If I don’t do it because I’m nervous or scared that would be different, but I would have missed out on so many friends and so many memories. From now on I’m going to try and be less self-conscious about the help I need, although I know that sometimes that is a lot easier said than done.

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.

Learning to ask for help

One of the hardest things for me to do when I was younger was learn to ask for help. Disabled or not we all have to ask someone to lend a hand every now and then. It can happen at any time. Whether it’s when you’re sat in class at school, the first day of your new job when you’re so nervous you’re almost too scared to move in case you knock something over, never mind ask someone to explain something again, or needing to ask directions in a new place. Okay, maybe not as many of us worry about being clumsy (like me), but I think you get my point. Admitting you’re not Superman is hard at first.  It does get better though, honest.

Earlier this week I took my walking frame Martha on her first proper trip to city. I went alone so I didn’t have my parents of any of my friends with me who are always more than willing to come to my aid. If I needed something I was going to have to either speak up or struggle.

I booked my rail assistance 24hrs in advance so that I could give staff at both of the train stations I used that day plenty of notice that I’d be around and I’d need assistance with the ramps to help get me on and off the train. Luckily I use both of these regularly, one being my local station and the other being a connecting station I used on my many trips to and from university. It also happens to be one of my favoured shopping hangouts so it’s fair to say I’m there quite often. The people who work at them both recognise me and what helps me best quite well now. A lot of the conductors know my face too, and even the driver on one of my more regular routes knows who I am the so all this is really reassuring. It’s nice to see a few friendly faces, especially if I’m nervous about my trip for whatever reason. If my plans ever change last minute they’ll always try their best to help me get earlier or later trains which is really helpful.

While I was out and about I had to smile sweetly at a few passersby and ask them to help me open the doors in the coffee shop where I had lunch, pick something up that I had dropped on the floor and couldn’t reach (told you I’m clumsy, didn’t I?) or help me put my shopping into bags at the checkout. Once upon a time I would have been too shy (not proud, but shy) to ask a stranger to do me a favour. Then, as I got older I realised that I was only asking someone to help me with small things and not to give me the moon on a stick. It took me a long time to realise that we all need help sometimes. Watching my friends all do things for each other at school and even more so when I went to uni that no one lives a truly independent life. All humans are interdependent on each other in some way. For example, that same day I spotted a lady in the supermarket asking a fellow shopper to get something down off a high shelf for her. I smiled to myself knowingly as he obliged.

It’s very rare that someone won’t help if I ask, and that’s mostly when they’re in a rush themselves so I can’t blame them. More often than not, people will do what they can and then walk away with smile on their face feeling happy that they’ve done a good turn.

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.