STARGARDT’S DISEASE

“Tell me about your vision.” That was the question addressed to me just minutes after winning the 1500 meters at the 1999 Pan American Games,

Still high on adrenalin and the excitement of the race, the question angered me.  “What does it matter?” I wanted to say. 

I have been legally blind for so many years, I don’t even think about it much anymore. Especially when I run a race. I don’t mind answering questions about my vision, however, at the finish line, I’d rather focus on something else. 

I have a juvenile form of macular degeneration called Stargardt’s Disease. You can do a quick Google search on the web and find numerous sources of information about Stargardt’s, including descriptions in medical terminology. So, for the purposes of this web site, I would rather focus on the functional aspects of vision loss and how it affects my life. 

“What do you see when you run?” If only I had a dime for every time I was asked that question. I would be a millionaires! In a nut shell, here is my answer; I see the ground beneath my feet, I see the other runners near me, moving bodies, colored uniforms, however, I don’t recognize faces until I see someone up close. I see the bright white lines that designate each lane of the track, but for races longer than 800 meters, you don’t need to stay in a particular lane. It’s a free for all.  If I had to, as I did in high school and college, I can see well enough to stay in my lane and sprint to the finish without any hesitation. 

Stargardt’s is a degeneration of central vision (the macula) so visual acuity and some ability to distinguish colors is lost. I also have trouble adjusting from light to dark environments, which is why I don’t like running into shadows. I can’t see faces very well and have a difficult time recognizing people across a room. Even people I know well seem to disappear if they are more than 20 feet away. I must call their name to find them again. Even my husband! 

Since my peripheral vision is intact, I am able to run without assistance or a guide. I see the “Big Picture” of things, like other runners moving (although I don’t know who) or cars and traffic moving. I am more likely to run into something that is sitting perfectly still and positioned directly in front of me, than another moving runner. (A parking meter is a good example). I have never had a collision on the track or on the roads because of my vision. The jostles and tangles that occur during a race are a part of the sport and happen to everyone trying to run fast and obtain the perfect position within a moving pack of runners. 

What don’t I see? Clocks. Lap counters. The scoreboard. And, other runners that have “pulled away” from the pack.  If that happens, I usually see something up ahead, but I don’t know what, or who, or how many. This makes it difficult to know my position in a race if the field is “strung out”. Sometimes I just don’t know what place I finished until someone tells me.  I often rely on the announcer who rattles off lap splits and positions by name to the crowd. I need that information too.  In an international race, like the Olympics, relying on the announcer doesn’t work. It is usually in a different language, or the reverberation of sound in the stadium makes it impossible to hear when you’re on the track.  So, I just run.  I don’t worry about what I might be missing. There isn’t time. Just race.  That is what I do. 

Why the media is often confused on how I run with only partial sight, I think it is far more difficult to do other visual tasks.  Like pay the bills. Grocery shop. Read a text message on my cell phone. Little things that we do everyday become awesome challenges when you can’t see. The printed world is not accessible to me without some kind of powerful low vision aide.  A hand held magnifier helps me find products in the grocery store (one item at a time) and a closed circuit television, or CCTC helps me read the mail and pay bills. Special software enables me to use the computer. It is slow going. It takes twice as long. But, I can do it.  However, sometimes it is nice to have help. 

School was difficult. I was a slow reader. But, I never gave up. It was important to me to earn my degrees – just as important as the Olympics. 

Today my visual acuity measures 20/400 in both eyes. There is no cure for Stargart’s and it is not correctable with glasses or contact lenses. I have seen the world with my vision for nearly 30 years, and like everyone else, I can see the beauty of a sunset or the green of a forest. My picture might be a little different than yours, but I appreciate it all the same. 

At the end of the day, there is just one thing that I wish I could do. Read to my daughter. She has little patience for visual aides, and how nice it would be to have her in my lap, glance over her shoulder, and read to her. What a great gift it is to be able to do that. 

 

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Perkins School for the Blind