Happy new year! I know it's been a while since I last posted a blog, but it's taken me a while to think about what to actually write about and how to say what I want to.
I went to Moorfields for more testing on the 30th November 2012 to help in properly diagnosing what I have. The good news is that they know for sure that I have Stargardt's macular dystrophy. The bad news is that I've lost a considerable amount of time. Remember that I originally said that they predicted me to have my vision for another 10-15 years? Well, I now have a maximum of 5 years left, which, Professor Moore said, would be highly unlikely that I have even 5 years left. So I guess you all know why it's been such a long time, in respect to how long it's taken me to write this. Just the shear loss of time I have left with my vision is just ridiculous! But, I'm coping and I'm not letting it get me down.
If I let this condition get the best of me, then I won't be able to make the most of what I have left of my vision. I won't be able to enjoy my life, and make the most of the opportunities I get if and when they're presented to me. I know I haven't made the most of the opportunities handed to me in the past, but things have changed now, and if I don't take hold of opportunities with both hands, I may never get another chance. Just because I'm losing my vision, doesn't make me any less of a person, it doesn't stop me from living my life like everyone else. Sure, I can't drive a car, fly a plane or be able to read, but I can still do so many things other than that. I can still go out clubbing, I can still spend time with family and friends and feel normal and I can still look after myself. Above all, I can still listen to music. Music really does help me to express how I'm feeling in a very indirect way, and it has helped me deal with issues in the past, and it will help me in the future. Without music, we wouldn't have clubs, we wouldn't have festivals and above all, it wouldn't help connect people. I've made so many friends just because we have similar tastes in music, and that is a beautiful thing, in my opinion.
I think the most challenging thing that I've had to face in the past few months is to stop thinking about all of the negatives, but think more so about what positive things I still have, and what could come to me in the future. I can still go to university and study economics, I can still get a job despite that I have a disability. I know that the Universities that I have apples to will accommodate for my poor vision, and will help me through the condition and businesses won't be allowed to not hire me just because of my vision. Sure they may not like it, but it still doesn't take away from the fact that I may be right for the job and I have the necessary qualifications to carry out my job.
But I have felt stranded and lost, with no sense of what I should do to help secure my future and what I can do to help myself. I don't even know what I need! My condition isn't so bad that I need a guide dog. but then it isn't bad enough to be registered as disabled, where, in fact, I am disabled. My vision will deteriorate and there's nothing I can do to stop it... Other than stop eating any foods that contain Vitamin A. The only thing that I have found helpful is the extra time in exams. Since I study subjects that either require a lot of reading in exams, or have very short time periods, having extra time has really benefited me. If I feel pressured for time, then my vision becomes more blurry and I take less information in, but with the extra time, I know I have more time, I can take my time to read case studies or data and I have more time to read the questions properly. Hopefully, with results coming out in early March, that I've performed well.
But there is hope! Recently scientists managed to completely regain the sight in blind mice. Even though their condition isn't the same as mine, any developments with regards to eyesight will have massive benefits to other ongoing research on treating other conditions. Furthermore, there are also trials going on which will help patients with Stargardt's disease, which have been in progress for nearly a year now. A link can be found detailing the research can be found at the end of this blog.
However, I have recently noticed minor changes in the clarity of my vision. Whilst revising, I became exceedingly reluctant to read my own handwriting as I couldn't tell letters apart, and also the fact that I can't see the lines on my paper, meaning that my writing is all over the place - above the line, below the line, in the middle of the line. It's very annoying, especially because I like to have nice, clear and legible notes for revising from! Furthermore, my colour vision and clarity of vision is also degrading, especially in regards to video gaming. Yes, I'm a self confessed game-aholic and I love playing games right the way through, especially the Batman Arkham Asylum series. But recently I've noticed that I can't see small characters as well, for example, the Halo 4 multiplayer rooms, and also because of the background colours combined with armour colours are so similar to the background! I was lucky if I managed to shoot someone. But still, I managed to make the most of it by running away from my friends who were trying to kill me for easy points. (See? Negative into a positive! But I do admit I got a bit annoyed because I couldn't actually play properly.)
Finally, a quote to end this blog: "To be blind is not miserable; not to be able to bear blindness, that is miserable." - John Milton.
Linkshttp://www.guardian.co.uk/science/2012/jun/04/stem-cell-first-human-trials
http://www.mrc.ac.uk/Newspublications/News/MRC003363
Here is also a Facebook page, where I shall also post links of my new blogs to:
http://www.facebook.com/HarrietsEyes
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