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Home / Stories / Personal Histories / Other's Stories / Sophie

Sophie

Written by Sophie on Sunday, October 30, 2005

Why am I transabled? This would be the biggest question people ask me when we chat online. Hi I’m Sophie (see Meeting Someone New).

I have thought about this a lot and feel this partly has to do with the time I spent in school. When I was a toddler I was diagnosed with Coeliac Disease. For those of you who do not know what this is, it’s when my immune system overreacts to gluten (found in wheat, oats, barley and rye). The effect of this is the lining in my small intestines becomes inflamed and stops absorbing any nutrients. My parents found this out because I started looking like one of those starved African children on those "sponsor a child" ads. Pretty much my whole life I’ve had to worry about whether I should go to this lunch, whether I should bring something, how to handle the "over helpful" lady in the kitchen. My whole life I have dreamed of going on a camp/lunch/restaurant and not worry about whether the food I’m getting has maize corn starch rather than wheat corn starch in it.

Okay… you think… that’d be enough to handle in life. But wait there’s more! I have a condition called Familial Tremors. Basically anything in my upper body could have a slight tremor to it that I can’t control. For me it mainly affects my hands. It gets so bad that I can’t trust myself carrying any full container/cup/whatever. I can’t remember a time when my hands didn’t shake… I’ve been told that is quite unusual for someone as young as me.

I was always teased at school. Because of the shaky hands and the title of having a "disease" (it isn’t a disease), I didn’t have any friends. My mum changed my primary school at one point and it didn’t get any better. When I was five, I was just starting school. I was being teased just as badly then as when I was twelve. And then one day I fell off the jungle gym and felt an awful pain in my shoulder. One of mum’s friends came and picked me up from school and took me to the hospital. I can distinctly remember nothing other than an x-ray being done about it; they set my arm up in some sort of the foam sling thing a couple of days later when mum took me back. It turned out I had broken my collar bone. After a weekend of being home I went back to school surprised and amazed. Everyone had had a change of heart. People helped me, were nice to me, hung out with me, no one bullied me. As soon as my shoulder healed, everything went back to the way it was. Now, I know I was only five but something must have stuck because two years later I got kidney stones and made sure everyone in my class knew about it. Having kidney stones was excruciatingly painful. I had solid mineral stones passing out of a seven-year old sized hole. I spent most of my nights sitting on the loo crying because of the pain. At school we happened to be training for cross-country running, mum hadn’t thought about that. I’d been up the night before, in my nightly on the loo ritual. I was tired to say the least. For some strange reason I decided I could "rest my eyes" and walk down the last straight of the school field. The results weren’t good; I walked into a rugby goal post and got a black eye!

As I got older I became more and more able to handle my "health problems". Life became more "normal" and now if you saw me you would have no idea about these things. You might think I’m a little nervous from my shaky hands, but wouldn’t give me a second thought.

I’d always wanted to be a nurse. Mum tells me that when I was seven and in Waikato hospital getting my kidneys sorted, that I told her "I want to be a nurse because they do more than doctors!" Unfortunately I couldn’t live out this dream because of my familial tremors.

I’d always known I had some sort of an attraction with medical stuff. When I was in high school I dreamed that some big accident would happen to me preventing me from taking School Certificate, I was really sick of studying.

I was studying in a Bachelor of Nursing degree last year and at one point we spent time practising changing bed sheets and transferring patients into wheelchairs. I really enjoyed it when my friends made the bed with me in it, pulled the sheets tight so I couldn’t get out, pull the rails up and closed the curtains. I’d never want them to think I enjoyed that so I kicked up a fuss… oye! Wendy! I want to complain about your nurses! They’re abusing me!" Her reply was to ask the girls if they wanted her to help hold me down… by then I was struggling to get out. To continue the torture, they transferred me into a wheelchair. They did it in the sort of style you would use to transfer an ambulatory resident in a nursing home, it felt degrading. The wheelchair was a bit narrow but the second I was plopped in it something clicked. I wrapped my feet around where the footrest should have been, placed my hands on the wheels and wheeled away. Getting out of that chair again would have to be one of the most painful things I’d ever done (worse than the kidney stones). I figured that feeling this way wasn’t right so I walked away and carried on with life.

What does this "Autobiography" have to do with why I’m transabled? When I get into a wheelchair I feel safe. Like I belong there. When my other health problems were affecting me felt a noticeable trend. People paid attention to me. People were a lot nicer to me. I felt safe and happy despite the pain I was in. I guess I associated the feeling with being in a wheelchair, but it’s slightly different. What I like about wheelchairs is that they are an aid for your independence that won’t go away. People will always feel the need to help you and be nice to you. You won’t need that help but the attention is there.

I personally like the sporty ultra-lightweight chairs. They look like that they are a part of you, an extension of you. And for me and my flat feet (yes another problem) I might be faster, and more agile, and go further than I know I could on my feet. Sure I’d have to worry about my bum but at least I wouldn’t be feeling any debilitating pain in my feet.

I hope this gives you an insight into why I’m transabled, and that it makes you think as to why you are. No one has the same experiences, we all may have similar reasons but that feeling you get when you’re in a chair is unexplainable. You need to feel it for yourself. I want to thank Sean for creating a site like this. It’s good to know that there are other people in the world who struggle with the emotions I struggle with. I really value his friendship. And one correction I’d like to make to that "thought" he wrote about me, I do want an SCI, I don’t want to settle for just being a pretender, I know I could never be satisfied with that.