At horse shows I’m known as “the blind girl”, which is fine with me! The way I 'see' it is that this is a first step in my campaign to change people’s perception of what it means to be visually impaired/legally blind. I hear everything from “she doesn’t look blind” to “how does she see the jumps and know where to go” to “there’s no way she’s blind, she’s probably just making it up to get attention“. Many can't fathom how someone with low vision is able to navigate a jumping course, while others laugh at my giant whiteboard with brightly colored raised jump magnets and giant arrows; i've even heard someone go so far as to say that a horse show is no place for a disabled person.
What many don't realize is the toll that being visually impaired takes on a person; financially (consider accessibility needs, assistive technologies, aids, etc), physically (energy spent, eye-strain, fatigue, etc) and also from a time standpoint (how much longer it takes for a blind person to perform a task than their sighted counterpart). Let me explain for a moment: even the simplest everyday tasks take someone like me significantly longer to perform, and often I am left waiting for factors out of my control to do their part of a process before I am able to continue/finish).
What does Wren see?
Imagine you've just gotten out of the shower and the mirror in your bathroom is fogged over. Your reflection is a blurry version of yourself with no exact edges or detail, but rather a blurry blob of your hair color on top of a somewhat circular blob of skin-color where your face should be. This is what I see in my peripheral (side) vision all the time. Now, take an eraser and erase a circle right in the center of your vision about the size of a dinner plate. This is where things get complicated! Instead of there just being a blank white or black spot in the center of my vision, it looks to me more like there is a constantly sparkling blob. This 'sparkle' effect comes from my brain using what color and movement it sees in my blurry peripheral vision to continuously guess at what should be in the blank central part, thus resulting in a constantly changing image of what my brain thinks is straight ahead of my eyes rather than what is actually there. This results in all sorts of mishaps, from running into things that lay directly ahead and out of my field of vision, to not being able to find small objects, or even see a person standing or walking towards me.
Stargardt’s affects central vision, ability to see detail (and do such things as reading, writing, and facial recognition), depth perception, and color recognition. Stargardt's disease can also cause problems such as glare and difficulties adapting to changing light conditions. It may take longer than usual for vision to adjust when going between bright and dark areas. Additionally, Stargardt’s patients eyes are very sensitive to sunlight; even on a rainy day or at dusk, you’ll usually see Wren wearing sunglasses outside.
Wren also needs glasses/contacts and has astigmatism (that is, a defect in the eye or in a lens caused by a deviation from spherical curvature, which results in distorted images, as light rays are prevented from meeting at a common focus), Because of this, combined with the Stargardt’s Disease, it is not just Wren’s central vision that is affected, but also her peripheral vision.
What is Stargardt’s Disease?
Stargardt Disease, also known as Stargardt's Macular Dystrophy, is an inherited genetic eye condition that affects your macula. Stargardt's is in a sense a form of juvenile macular degeneration, but the gene responsible for the disease is different from that of people with macular degeneration. The macula is a tiny part of the retina, the light sensitive film at the back of your eye, and is where the incoming rays of light are focused. This area is responsible for your central vision. In people with Stargardt's disease, special light-sensing cells in the macula, called photoreceptors, break down and die off. Stargardt macular dystrophy causes a reduction in your central, detailed, vision. This is the vision you use when looking directly at something. For people with Stargardt's Disease, progressive vision loss eventually leads to blindness in most cases. (In the United States, legal blindness is defined as visual acuity of 20/200 or worse while wearing corrective lenses.) But it's difficult to pinpoint exactly when retinal damage will occur or how fast it will progress.
Is there a cure?
There is no cure or treatment for Stargardt Disease, nor a way to slow down or stop the progression of vision loss.