Youth Space Spotlight: Alisha

January 18th, 2014 by FFB Canada

1. Can you share with us what retinal eye disease you have and when you were diagnosed?

Stargardts at age 21

2. Did vision loss have any impact on your education choices?

At the time I was already pursuing nutrition and I was able to continue with that.

3. What do you do for a living? How have you adapted your career to your vision loss?

I don’t really know what my career goal or path is yet. I thought it was nutrition, but as of late my mind has changed. It stresses me out sometimes because I always have to realistically consider my limitations.

4. Can you share with us how vision loss has impacted your relationships?

I’m self conscious, which I haven’t really been since I was a child. Even in retrospect, I’m far more self conscious than I’ve ever been.  I wonder if it’s obvious that my eyes aren’t aligned anymore or if it’s noticeable that I can’t see eyes well enough to maintain eye contact. I worry that I’ll be mistaken as flighty or evasive because I cannot look someone straight in the eyes from a distance.   When it comes to boys, I tell myself if they don’t like me the way I am, then it wasn’t meant to be. Same goes for my friends. I explain why I can’t recognize them from a distance and they understand.

5. It’s no secret that vision loss can lead to anxiety and depression. How do you maintain emotional balance?

I think about my vision loss several times a day and it saddens me sometimes, but I try to keep a positive outlook. There are several ongoing studies and science is making so much progress that I know a cure has to come soon. I pray about it because it’s very hard to function with this disease. If anything I’d say I’m anxious. I’m worried that I’ll be judged and penalized or that the progression of this will lead to further limitations. I try to look on the upside – the fact that I can still type and walk around without assistance.

6. What accessibility aids can you not live without?

Right now I use my iPhone, my MacBook and my magnifying glass. The first I use to take pictures of things because I find it’s more useful than the magnify app and clearer as well. The second I use to expand text while writing, and to watch TV shows and communicate. The last is for work because it’s the only thing that’s conspicuous enough. Besides, I can’t use my MacBook or iPhone at work.

7. Our 2012 Toronto Vision Quest Youth Panel agreed that we all ‘hate’ 3D movies, revolving doors and garbage days. What’s your pet peeve?

The lack of awareness about retinal degenerative diseases. I do not like people suggesting that I wear glasses contacts or get Lasik when I tell them that I have Stargardts.

8. If you could go back in time and talk to your younger self about vision loss, what would you say?

I would tell myself at 12 to continue getting eye exams annually because that was the first and last time I went to see the eye doctor before I turned 19. At that point, I was forced to go to the doctors when I noticed I couldn’t read fine print. I would tell myself to invest in good-quality sunglasses and wear them whenever I’m outdoors, because this was something I didn’t do even though I had a few jobs where I was exposed to direct sunlight for hours at a time.