One of the most common encouragements you will hear as a patient of Stargardt's is, "don't worry you can do anything you want." I personally think that is a horrible thing to say, especially to kids. Don't get me wrong, i'm not saying because we have Stargardt's our lives stop, but I think it is important in teaching your kid or yourself to understand the difference between physical limitations and mental fear.
I've been living with SD for more than 15 years, and I still cannot fully grasp what my limits are exactly. Now here is what you CAN do, you can play ball, exercise, go to school and almost everything you can think of. But reality is, you won't be able to play as good as some sighted person, you will read slower than them, but it doesn't mean you shouldn't try to be YOUR best.
The problem I see with msot people, including myself sometiems, is when we think of something new, we fear the unknown and use our eyes as an excuse not to try. It tkaes alot to break that barrier, remember this, you can't live in fear forever, so why not overcome it, wha'ts the worst that can happen.
Even for sighted people, many people say they "can't" but if blind people can do it, there's no reason why sighted people can't. The word itself is incorrect, the best way of putting it is "won't". So next time you decide to say "I can't", think twice if its fear tha's holding you back by choice, or is it really something your physically incapable of doing.
Monday, December 1, 2008
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I really inspired by your words. From last two weeks I am regularly following your blog. It makes some change in living style. My confident level increasing.
ReplyDeletethank you very much.
keep it up.
you are doing a great job
Glad to hear what I'm writing is helping you out in any way. If yo uever want to share your stories just let me know.
ReplyDeleteHi Jen,
ReplyDeleteI could relate to what you have been writing. I suffer from a variant of Stargardt's for 10 years. I've 26 now.
I think low vision is only a challenge not an inability. My vision might not be too worse at the moment, 6/60 in left eye and 24/60 in right eye, but it creates a lot of problem for me as I'm in academics, into literature. You can guess how it is to read a book with the central scotoma. Besides, I'm an indian, in school, college, I never received any special accommodations. I got low grades as I couldn't perform in standard testing conditions, could never finish my paper more than 2/3rds, but I never gave up. I tried to pose better competition for others, I read more than even the best students, I learnt languages.
I think it is important to believe in yourself and never give up. I know at times it can be disappointing and frustrating to always walk an extra mile to do even the simplest things, but at least you can do it. There are many people with more limitations than us. At least you know what is "color", there maybe people who wouldn't even understand a world of colors, imagine how they distinguish life :-)
It is important to have some passion, some dream for which you can live and fight for. And if you have one, no one can stop you do what you want to do :)