Changes

"With life, it’s a race, some people complete the race a lot faster than others, but those who do that don’t win..."

This story is about a young girl, Imogen who writes every now and again about dealing with the fact that she has an incurable skin condition. She also talks about her inspiration and advises herself and the reader about what it's like to have a disease and how to deal with it.

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2. Often a test of courage is not to die but to live – Vittorio Alfieri

IMAG0124 – 15/10/2011

Dear Reader,

The 124th picture on my ‘smart’ phone was of the Vitiligo below my left ear, only now it had changed. What was once a large patch of light skin had become three pieces of it. I think this was a good sign, my skin colour started to appear again but there was a trail appearing from the large patch to my mouth and a spot had appeared next to my ear. It was definite that the disease liked to play games with you, like this one, they would disappear and reappear somewhere else. That’s the thing about diseases like Vitiligo; they want you to know that they are there especially when they don’t cause physical pain.                                                                                                                                                                                      I don’t count myself very lucky; not only by getting Vitiligo for an unknown reason but also, teachers never pick me for anything extra-curricular in school; I am one of the last few in my physical education class to get picked by a team captain. I rarely win any competitions I enter. On a whole, I have realised that I am practically invisible to society which isn’t entirely a bad thing but it does have its flaws. Although I don’t like to attract a lot of attention to myself, if I wanted to voice my opinion once in a while, people would instinctively look at me and eyes were the last things I wanted surrounding me. I don’t blame them though; it would have been even more offending if they didn’t look at me but that is kind of what I want these days. Class debates in school are detested, whether I have something to say or not I don’t wish to participate in them. If I had the choice between writing an essay and having a debate, I wouldn’t choose the latter. During a debate in English about whether rich people should pay more taxes than poorer people, I actually had a lot to say for once in my life but I didn’t have the courage to put my hand up in order to avoid someone arguing against my point – I hate debates anyway. It was only after the debate, at break time I voiced my opinion to my friends. I often regret not speaking out at the right time however I knew why I didn’t and so settled with staying quiet. The advantage of being a small person is that you can hide without even trying – you become the fly on the wall in a good way because people look straight over your head, on the other hand nothing fits you which is a bummer.                                                                                                                                                                                            A lot of my time is occupied with questions like how will l get far in life being the way I am, I have ambitions and goals that I strive for and want to achieve in the future. The hardest part is how I’m going to get there. I have learnt that the future is created in what you do today and not tomorrow, but what exactly can I do and also if you trust God and acknowledge Him then he will direct your path but is there a God and do I want to rely on Him to create my success?  Question two. I know that one thing I don’t want to do is change my personality in order to get somewhere in life, I want to be myself otherwise whatever I am striving for isn’t what I really want, it’s just a fantasy and not something I believe in. Being how I am the future seemed very bleak, how can you stand out from thousands of people who have similar ambitions to you? Question three Vittorio Alfieri said that ‘a test of courage is not to die but to live’, so I can’t be a cop out and commit suicide to show that I am a courageous person, I have to live to show that I can climb through obstacles to get to where I want to be.

I suppose that when normal average people hear the word disease they often think of germs and pathogens and impure and unclean conditions which is merely why I prefer to call Vitiligo a skin condition which it is but people often slip towards saying disease instead of a condition as if it can be passed on, dangerous and can somehow start a deathly plague. But it’s not. I think they couldn’t give a more vindictive disease an uglier name, like cancer. I call it vindictive because I have convinced myself that I may have done something wrong in the past without knowing it to deserve this condition – so this is the revenge, or ‘karma’. Considering that the cause is unknown, the condition may be some sort of unreasoning vengeance against me for an unknown reason.                                                                                                        

I rarely talk of it but think about it a lot because if I talk to about it that is all people will think about when they talk to me or see me in the future. They will focus on it making me feel conscious of their eyes on me. They will ask me questions; questions that I don’t know the answer to and probably never will. Although, I tell people that I am aware of it and so they know that I know that it’s there. I don’t want to be judgemental however, there are some people that if I tell them about it and tell them everything I know then they would listen and not base all of our future conversations around it and make me feel uneasy. For now, I talk to myself about it as I haven’t found that person just yet.

When I do say its name, it feels as if I am being punched in the stomach. Saying “Vitiligo” gives me an unhealthy feeling – I have never heard and said any other word as disgusting as this one. I refrain from saying it if someone was to ask because the name tastes disgusting in my mouth as though I’ve swallowed something I shouldn’t have. Whenever people ask me what it is I pick from a few options I created for myself:

Option One: “It’s a skin condition” – vague but short and sweet. Option Two: “I don’t know” or just shrug my shoulders – conversation closed. Option Three: “The thing Michael Jackson had” – allowing them to go away and do some research if they were that interested in knowing what exactly it is. Option Four: “Vitiligo” and then walk away.

I almost never choose option four because of the aforementioned reasons. I walk away to avoid the conversation from expanding because the person/ people asking would probably choose one of three options:

Option One: “What’s that?” which will make me mildly angry because again it’s an unanswered question. Now here I have three options, go onto the scientific tangent: “Um, it’s also known as hypopigmentation. It’s where melanocytes in the skin that produce a chemical called melanin which gives the skin colour and protects it from the sun stop working…” blah blah blah. Or “This” and point to it. And finally, the easier route “I don’t know” because technically I don’t and don’t wish to go further with the conversation. Option Two: “How did you get it?” Umm… Option Three: “Sorry?” *Angry face* this means I have to repeat the word again hence why I don’t choose option four.

And that’s my system around the inquisitions.

If people somehow assume that I bleached it. I bemusedly deny it. Bleach? Are they joking or…? It makes me angry that people think I am so unhappy that I would try to discolour myself and as I write this I’m grinding my teeth. In all honesty, I like being who I am and if the opposite of bleaching existed that was cheap and easily accessible I would definitely choose that.

Another assumption is that I may have somehow set fire to my neck and chin causing me to have first degree burns. No comment. I know for sure that I am not that damaged psychologically enough to get hold of a lighter and set my skin alight. However, that would have been easier to deal with instead of having a long-term condition as it is most likely to heal and not progress into something bigger every two or three weeks.

I make those decisions just to get them off my back, I suppose I can’t now that you’ve read this, I don’t like to go into detail about it and hardly ever bring it up. Of course it’s not a joy to have and it is not something that appears one day when you get up out of bed and so you end up in a strop and crying your eyes out. It gradually appears so I’m guessing the people - like me – have learnt to deal with it and not pay any attention to it and seem conscious of it when in public. People stare just as they would for anyone with a visible disease, condition or disability. I don’t consider myself a sufferer of the condition because I’m simply not suffering, although I cannot lie that my mind is suffering under the stress and questions constantly being created by my uncontrollable thoughts; my mind is plagued by them. 

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