Tag: Cerebral Palsy

Cooking with Cerebral Palsy

Here’s a question for you: why aren’t there more disabled chefs on Television in the UK?

These days I’m starting to feel like I can’t flip on the TV set without someone taunting me with images of delicious meals that they’ve just made themselves, quite often from scratch. I stare longingly at them all for about three seconds with mouth watering and then have to change the channel, and not just because in those few seconds I’ve become so hungry that I want to devour everything in my food cupboard. I switch over to something else because I know that there’s a good chance I won’t be able to make that meal for myself, not necessarily because I can’t cook (in truth I’m hopeless, but that’s beside the point)  I know that I can’t cook in the way that others who don’t have my physical difficulties can.

When I step into a kitchen people have to worry about more than me giving them food poisoning. I can’t lift pans full of ingredients, so cooking on a hob is a no-go, I can’t balance well enough to get heavy or big things in and out of the oven without burning myself or dropping it on my foot, and even things like chopping and peeling potatoes are a major struggle. So yes, sometimes when I see cookery programmes  where the host is casually zipping around the kitchen carrying oven trays and slicing onions at eye-watering speed (no pun intended) like it’s the most natural thing in the world, I get a little frustrated with myself.

Slowly I’ve been working out as many ways around it as a possibly I can. One of my most valuable life lessons I think I learned over my time as a student is that you can cook pasta in a microwave if you put it in a suitable container and pour boiling water from the kettle over it (in your face, saucepans!). If I’m in charge of making my own dinner I’ll use Quorn instead of meat because that too can be done in the good ol’ microwave or I eat a lot of soup because, yup, you guessed it, that goes in there too.

I know that there must be a lot of disabled chefs out there and I’d personally love it if they were given more air time so that I could learn their tips and tricks. I know that a group of disabled chefs recently made it to the final of ITV show Food, Glorious Food. While researching for the post today I came across Michael Caines, an award-winning chef who also happens to be an amputee and has featured on the Good Food Channel before. I just hope personally that one day there are a lot more cooks on our screens with difficulties simliar to mine who cook their pasta in a plastic mesuring jug and do lots of other interesting stuff I haven’t thought of yet.

If you have any hints to share that you think would come in handy, please leave them in the comments box below.

Birthday Surprises

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Dad and I

At the risk of sounding like Sheldon Cooper from The Big Bang Theory, I like trains. In fact I like them an awful lot, but probably not for the same reasons he does. Unlike Sheldon (played by Jim Parsons) I can’t name them model, and if there is a way to get somewhere that is much faster I’ll choose that option rather than make my friends add hours to their journey just so I can ride on a choo-choo, but they are one of my more favoured modes of public transport.

For a long time I was just as afraid of them as I am of the bus. I’d heard all sorts of horror stories from people about them being left on board and ending up in all sorts of places they’d never intended to be, but given that I knew you could book ramp assistance and seats to help with disabled access I knew it was one thing that I would have to conquer in the end. I started out small at first when I found myself an internship at a company that was based a half-an-hour ride away from my home. Mum came with me the first day to make sure that everything went smoothly – and it did- so for the rest of the time I was on my own. Although this short journey was a massive victory for me, the real turning point came for me a few months later when I decided to travel back home from university by myself to surprise my dad for his birthday.

This was an even bigger challenge than the one I had faced getting to my placement and back. I had chosen to go to a university that was about 70 miles away from where I lived and would take me two trains – yes two – to get there. I’d had the idea for weeks, as soon as I realised that I had the afternoon of his special day – a Tuesday- off and I didn’t have another lecture until Thursday afternoon, but it took me about a week to pluck up the courage to book the tickets. I paid for them instantly and made arrangements for assisted travel before I could change my mind.  I hardly slept the night before with nerves. I’d never got more than one train per trip before and all I could think about was all the things that could go wrong. Every time I had a thought like that I tried to push it away and think only of how it would all be worth it to see the look on Dad’s face. This wasn’t about me, it was about him.

Thankfully on the day things all went according to plan. Members of station staff even walked me from one platform to another which was more than I had been expecting (in a good way) and when I saw my mum and her new partner waiting for me as I got off the last train so that she could take me to my Dad’s flat I thought that I might fall to my knees in relief.

When the three of us wondered into his kitchen together he just looked between us all and saw that my Mum and her partner were both in their work uniforms. For a second he looked confused and then he realised what I had done to get there,  smiled and looked as if he were about to cry.

I learned an important life lesson that day, two actually. I learned that I could manage the train by myself (with a little help, but there’s no shame in that) and I learned that it is important to push ourselves sometimes, if not for ourselves but for the sake of those around us.

That was almost two years ago now. It is my Dad’s birthday again on Friday and I really have no idea what to get him this year. I’m not sure if I can ever top my surprise, but I’m always willing to try.

I beat the bus!

Well, I did it! I managed to get the bus by myself yesterday! FOUR buses to be exact. I’m even more proud of myself for doing it too because I’m really ill which makes moving around even harder.

For those of you who didn’t read my post about battling with buses I suggest you go and do that now before you finish this one or you might be a little confused.

Like I said, not only did I have to catch one bus, I had to catch a few to get to where I needed to be and back. I could have used the train for part of the journey if I had wanted, but as that would have meant extra walking that I really did not feel up to doing yesterday so I opted to stay on the bus route. I thought that even though I find the train so much better to deal with it might make things easier. It did. By the end of the day yesterday I had a new-found appreciation for the bus that I’ve never had before. I’m still not any less scared of doing it alone, but I was grateful that I managed to cut out a lot of the walking that I would have had to do had I chosen the easy option and got the train half of the way. Ironic, huh?

It turned out that using public transport yesterday was far better than I could have hoped for. Other passengers helped me to get Martha on and off at most points where I needed to and were very patient. Some even helped to guide her into the designated spaces on board. As you can probably guess I had to go outside my local area yesterday and the bus company I was using most of the way had a layout of bus that I had never seen before. There was an actual bay for people to put prams, or wheelchairs or walking frames in,  even with enough room for another person to stand in it with them. It didn’t have any seats in which meant that I didn’t have to feel guilty about blocking any up, but it was close  enough to some that I could keep hold of Martha in case she decided to roll away and I would have been able to chat to anyone travelling with me had I been in my wheelchair. I could also tuck Martha in quite nicely so that her wheels didn’t stick out and there was no risk of anyone tripping on her. One lady even told me how much she liked Martha.

As for finding my way to an unknown place, I don’t know why I worried so much. The lady at the travellers’ information desk told me in great detail where I needed get off and where I needed to walk after that. She even wrote it down for me so that I could show the bus driver if he didn’t understand where I meant. That took a weight off my mind.

My journey started just after 7am and I got home just before 7pm. I could tell it was going to be a long one before I even left the house because when I tried to sit up I couldn’t. My boyfriend had to pull me up and then hold me up as I staggered to the bathroom. My Cerebral Palsy always seems to affect me more when I’m ill. My muscles all seem to get tighter and it gets harder to walk, but I had no choice but to go yesterday. By the time I got back I was exhausted but it was definitely worth the hard work. I did it. I didn’t think I would, but I did.

Battling with buses

Getting the bus is difficult. In fact it’s more than difficult, getting the bus is hard. They don’t always have ramps, don’t always sink low enough to the pavement to lift my walking frame on, and there isn’t always enough room to fit her on safely and out of the way of the other passengers once I’m on it. Right now, I’m sitting here and I feel sick because I know that on Monday I’m going to have to face this on my own. I’m so nervous I don’t quite know how to put it into words.

It’s not the first time I’ve got the bus alone, I did it all the time when I had my last job and that was hard at times, but it did get easier once the drivers and regular customers got to know me. This time it will be different because it’s the first time I will have done it with Martha, who is bigger than my last walking frame Betsy was when I used to do it with her. To make things even more daunting for me I’ll be using a bus route I’ve never used where none of the divers will recognise me and the help I need. I’m also going to have to rely on them to tell me where to get off. This is something else that I don’t like doing.

How difficult taking the bus is for me depends on a few main factors:

  1. Whether or not the bus has a ramp
  2. Whether or not there is space for me to sit down with Martha in a place where no one will trip on her
  3. If there are pram/wheelchair/other walking aid users before me (I just have to wait until a bus comes along with a free disabled space otherwise)
  4. How low the bus dips to the kerb
  5. How high said kerb is for getting Martha off the bus safely

A lot of these factors vary from bus company to bus company and area too so it’s not like I can develop a strategy to deal with every journey.

It’s not so bad if there’s someone with me who can fold the frame up and carry it on for me but I can’t do this myself and on Monday I have no other choice but to travel. I know that it is a battle I’m just going to have to keep on having with myself until it doesn’t scare me anymore. The more I use the same routes the less worried I get.

Squeaking in the rain

My callipers
My callipers

Over the years, I’ve tried lots of different things to improve my walking. I’ve tried various leg splits, sleeping with my lower limbs strapped into something called gaiters to keep them stretched out at night, and even surgery. This year though we decided to be different and try something I’ve never had before: callipers.

I’m willing to give anything a go that has a chance at keeping me on my feet longer than I would be if I didn’t try so when they were suggested I jumped (not literally) at the opportunity. I prepared myself for breaking in pains, possible blisters and even being told to “Run Forrest, run” from time to time. One thing I was not ready for though, was the endless squeaking. I didn’t realise there would be squeaking.

Now, every time I go out in the rain I find myself sympathising with the poor old Tin Man from the Wizard of Oz. I only have to put up with it until I can get home again and put something on them to stop it, how must he have felt?

If I’m honest I’m used to my equipment making higher pitched noises that I’m pretty sure no human could make. My old wheelchair developed such a bad one in high school that I could be heard coming to my lesson all the way down corridor and even Betsy wouldn’t hesitate to let me know when she was unhappy about the weather conditions, but they didn’t bother me as much. The noise is far much more irritating when you realise it’s actually coming from you and not something you have with you.

Still, I shouldn’t complain and if it helps my legs get better then it’s a small price to pay and I’ll happily put up with it for as long as it takes. It just means that I’d be useless at a game of Hide and Seek because you’d probably hear where I was going and I don’t think I’ll be getting a call from any spy agencies anytime soon. Ah well, c’est la vie, I guess…