Sunday, October 08, 2006

To be, or not to be...

Listening to: 'Valerie' by The Zutons [Tired of Hanging Around]

The Goo Goo Dolls did a gig at the Cambridge Corn Exchange last night. It's quite surprising how many good rock bands actually play here, considering what a small place this is. I guess the student population makes it worthwhile. But yeah, there was a spare ticket...I could've gone. I've never seen anyone play live before, unless of course you count the time I saw Jason Donovan in Joseph - man I used to love him (yeah I know, I was young and foolish). LOL I remember 'practising' my scream, for when he appeared on stage...hey, I was nine, what do you expect?! My poor darling father paid a lot of money for that birthday present.

Anyway, I digress. Like I said, I could've gone. The ticket wouldn't have been too expensive either. However, I had to decline on medical grounds. Yeah I can tell you're confused. I think I've alluded to my condition in a previous post, but I've never explicitly explained it in BlogWorld. I'm not sure why, but it's possibly because I'm trying to maintain that I'm more than just the sum of my imperfections. Nevertheless, I feel I should be less vague about what is undoubtedly a major part of my life, so here I am (this isn't supposed to sound dramatic by the way, so I apologise if it does)...

When I was eleven years old, I was diagnosed with a condition called scoliosis, which basically means that my spine is an "S" shape instead of being straight, and my rib cage is twisted. I had corrective surgery when I was 12, where a stainless steel rod (about a foot in length) was inserted and clipped to my spine. Because the curvature was quite severe, the correction wasn't absolute, so my spine's still a bit curvy and my rib cage is still twisted. [Useless piece of info: Melanie Blatt of All Saints also has scoliosis]

So what does this mean in the long term? Well, almost nothing. Externally I look mostly normal, maybe like someone with bad posture. I don't have pain, and my scar is just a straight line down my back, which isn't too ugly to look at. On a personal level, there are some limitations. I can bend from my hips and knees, but not from my waist. My heart and lungs have less room to expand (due to the twisted rib cage) so I get short of breath very quickly. If I fall (or bend from the waist), the clips that fasten the rod to my spine might break, and I'll be paralysed. Hence any kind of competitive sport is out of the question; same with crowds (hence the 'no' to the concert invite). Oh and I'm not supposed to carry heavy things because of the strain on the spine. Finally, when I look in the mirror, I look like halves of two different people stuck together...which can be quite frustrating when I'm in a vain mood...but that's more a case of low self esteem than anything else. Thankfully clothing covers my sins.

In one respect, I'm really lucky. I have a condition that has been largely corrected, and I can live an almost-normal daily life. Compared to people who have more severe mobility issues, I'm cruising. As long as I don't go near a big magnet, I'm fine. Oh and by the way, airport security hasn't detected the rod as yet.

On the other hand, I'm slightly 'disadvantaged' (although that seems like the wrong word in this context). Because people (including, and especially, my friends) can't see my condition, they forget that it exists. They forget/don't know about the limitations that I just mentioned. They don't seem to realise that I can't do things like a 'normal' person. They forget that sometimes, I need help. Any complaint on my part gets the response "oh she's whinging again, bloody attention seeker" or "if it's such a big issue, why did she come in the first place?" and I can see that my presence is a burden. Sometimes I think it would be different if I was pretty, but that's another discussion altogether.

So what am I? Am I disabled or not (see, this is where the title ties in, kinda)? According to the UK Disability Discrimination Act, I'm disabled if my condition has a 'substantial and long-term adverse effect on my ability to carry out normal day-to-day activities'...does having to stop half way up every small hill 'cos I'm out of breath count? I don't think so either. So legally, I'm not disabled. But since of late, I find my actions more and more restricted due to my condition. Or it may be that I'm trying to be more ambitious and then getting upset when I realise I can't do what I want to. If I'm not disabled, I should be able to do anything I want to, and anything anyone else does...but I can't. So, I ask you again, what am I? Call me a scientist, but I don't like being in a grey area where I can't be defined. I want to know where I stand. Our department's safety session is on Monday - do I tell the Safety Officer that I have 'disabilities'? Are they disabilities in the traditional sense? Do I have a legitimate place at the bottom-end of the disability hierarchy, or am I really just an attention seeker?

I'm generally of the opinion that one shouldn't get into a situation where they are a burden to others. Others shouldn't have to suffer for my sake. But does that mean that I can never go on a group holiday ever again? Does that mean that I can never go to a concert, even if I'm given a ticket? Does that mean that I should never engage in physical exercise (e.g. walking) in case I fall and someone has to take me to hospital? Suddenly something that was initially a very mild disability has turned into a huge deal. Suddenly I feel like I don't belong in the world of the 'physically perfect', and that I should 'stick with my own kind' (i.e. those with reduced mobility). Suddenly, I don't fit in.

Please understand, I'm not looking for sympathy. My condition is just 'one of those things'. The purpose of this post is not to make you feel sorry for me. I'm not ignorant to the fact that there are many of you reading this who have your own imperfections. How do you deal with it?

4 comments:

  1. heyy I rem when u had that surgery..back in the days...its not noticeble at all exterrnally so i guess its not easy for people to remember, although that really shouldnt be an excuse..please dont feel like u dont fit in..hey im always around to hang out with (yeah..great fun for u i know :P) heh..missed u at the dinner..see ya soon

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  2. I can't say I understand or say that I know how you must feel. That would be wrong cause I don't have what you do. But I do have a friend with the same condition as you. Like you said, it is easy to forget cause the "disability" is not visible!

    I think your friends should be more understanding or perhaps you need to remind them every now and then.

    There is still a debate out on wheather aesthetically pleasing people get treated better.. no comments there. Only thing I have to say is, you only look as good as you feel...

    I think your peers should be aware of your limitations.
    Before you assume you can't do anything (physical), you need to try it atleast once (within reason ofcourse), you just might surprise yourself.

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  3. I can relate slightly to this. My "deformity" (can't really be called that) is cosmetic and I'm not sure how many people notice but I'm rather self conscious about it.

    I don't think I've really learnt to deal with it; I don't volunteer the information but if someone asks me about it, I make a single sentence reply and change the subject :) I don't really like talking about it much.

    In your case, I'd say that there is a genuine health and safety reason to tell the person in charge of offices/digs about it: think, in case of a fire you don't want to have to sprint across the length of the hall/down long flights of stairs to get out, right? Although I say this, I can quite understand if you don't want to make a big deal about it. I'd probably do the same in your position.

    As for everyone else, if you can't do something or don't think you can manage it safely, don't do it. I don't personally subscribe to the view that you need to be a bench pressing, weight lifting maniac just to hang out with your friends (if that's what your friends do ;) I've had a mostly sedentary life thus far (through choice, I assure you), you can do the same :)

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  4. i agree with momok.
    and about ur friends, I'm sure they aren't purposely insensitive about it. People tend to forget things, especially when you look completely fine and do most things like normal.
    Also, I don't think you'd want them to treat you like something was wrong all the time.
    Things like this may not be the easiest to handle, but don't feel like it runs your life. It doesn't at all. If you feel like your friends don't know what ur limitations are, then maybe you should try telling them. If you explain it, it will be much easier for them to understand it.
    And just so you know, I know lots of people who think you're beautiful.
    so stop saying otherwise!!

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