By: Gene B. / Baltimore, MD
“What, you can’t see that?” Customers from behind will spit the words out with an impatient sigh. “Are you blind?”
This is what my sister, Briana, hears when she goes to the store and needs a little help from her son to use her credit card. She isn’t sure how to answer. Our mother and I automatically go on the defense in fear the words really hurt her, but we aren’t sure how to respond either.
“Yes, I’m blind.” she says.
But they don’t believe her. Of course she isn’t blind, they think, because she isn’t walking into walls or carrying a cane. For twenty two of her 33 years, her vision has been playing her like Tantalus’s punishment. She can see the figures of people, but their expressions are barely visible. She can see when a car is coming or when something crosses her path, but can’t quite see the full object. It’s enough to keep her mobile and somewhat independent, but no matter how hard she tries, she can’t get a full image.
Her vision is a piece of paper and Stargardt’s disease is the uncontrollable hole puncher.
For the longest time, she’s waited to be recognized in her struggle, putting up with purely ignorant comments and misunderstandings. Her original dreams of becoming a mechanic and working on computers were stomped on by her weakening vision until she was forced to change paths. She can’t drive, and it’s becoming harder and harder to get around because there is no cure. Back when she was diagnosed, it was understood that she’d be legally blind permanently, and it would progressively get worse. We just accepted it, because no number of hugs or apologies would give her sight.
I still remember when I entered an Allied Health Program in my school, and she said to me, “You can find a cure for my eyes now!” She looked so hopeful, and I wish she was right, but I knew it was beyond my power. It killed me inside. Sure, I could understand the articles now. I knew what was wrong with her. I understood that it was genetic, and I learned about how macular degeneration works, but the more I learned about it, the more scared I became that a cure was far beyond our reach.
And still, there’s no cure. But there is progress. We were in disbelief when for the first time we were told that there were glasses for her. For all of my life, I have been told that my sister is a special case. There are no glasses that can help. Make sure you read to her and be careful when you tell her to look at something, because she probably can’t see it. She is legally blind, and there is nothing that can be done. They drilled it into my head because that’s what the doctors used to tell us. But finally, for once, she can see the smile on her son’s face as he enters the room. She has some sense of normalcy back. Most importantly, she no longer feels like a lost cause or a forgotten medical record. The moment we found out that our visit to Low Vision Specialists of MD & VA had a purpose, I saw her soul brighten up like never before.
The car ride to our first visit was filled with panic attacks and doubt. We were awaiting the dreaded response that her sight was too far gone, but then, with a few lenses in front of her, she actually started reading the letters on the screen. “Yes, we can help you,” Dr. Thomas Azman said, and suddenly there was no more anxiety but bursts of tears, hugs, and celebration. I was immediately filled with this drive to help her reach her goal and get these glasses. After all, she’s my big sister. She’s always been there for me, and she deserves the same in return. But I didn’t realize just how far that drive to help had spread, because Briana saw more than faces and letters that day. She saw an opportunity to show others with low vision that something can be done.
We returned later to find that she was eligible to try eSight. I’d say it was successful, but miracle is a better word. She read down to the 20/16 line. She could watch TV, she could read, she could use it for almost any activity that her glasses wouldn’t suffice for. With the two devices together, she’d have her life back. I stopped trying to fight the tears. None of us saw that coming, but it happened. So now, we’re working towards that goal with the hopes that her journey will inspire others and show those with low vision the way to treatment.
We want families to know that it is essential to have supportive loved ones, and do not be afraid to ask how your visually impaired loved ones see the world. Our parents, siblings, and her son have shed countless tears about her diagnosis and everyday struggles. We know well that visual disabilities not only impact the patient, but the whole family. But understanding is key, and with power in numbers, we must fight to help those in the under recognized space between blind and visually able. We need to stop taking the world we see for granted.
Knowing that there are others out there who must be going through the same suffering, she wanted to bring awareness to those ailed with Stargardt’s disease and other visual impairments and send a message of perseverance. Before even obtaining her glasses, she has gone to college and raised a 15 year old son, and she wants to make it clear that it is possible for the visually impaired to live a normal life, even if tasks must be done a little differently. To those suffering, you are not alone, and you have not been forgotten. Please, don’t take the ignorant comments of the people in line behind you to heart. Don’t give up because you’re misunderstood. There are people out there who do understand you.
Briana wants the faces of Stargardt’s to know that even if the eyes lose sight, hope can be seen with the heart. It’s been an emotional journey, and with an unbelievably caring, down-to-Earth team of doctors, a lot of patience, consideration, and undying determination, all our doubt has been crushed. For the first time in twenty two years, with two little telescopes on a pair of glasses, she’s regained some of her sight. With eSight, she will have the chance to see even more. And for that, our whole family will be forever grateful.