As someone with a blinding disease called retinitis pigmentosa, I’m very thankful for the cutting-edge research underway that will lead to treatments and, I hope, a cure. My condition is rare, but retinal diseases, including age-related macular degeneration, collectively affect more than 10 million Americans.
I was born congenitally visually impaired due to a condition called albinism. I was able to read large-print books and walk without assistance anywhere I wanted to go. I wore glasses that allowed me to see what I wanted to see; however, what I saw with and without my glasses was foggy. I knew my family and a few friends from their voices or what perfume or cologne they wore. I could tell where my mom was because she wore high heels, and I knew the sound of her walk. I would know my husband by the way that he would touch my hand. I never drove a car because I couldn’t obtain a driver’s license. I depended on my parents, a few friends and now my husband for rides.
In late September 2011, I was diagnosed with retinitis pigmentosa. By this time, I only had light perception. I remember needing my husband to hold my hand to escort me into my optometrist’s office. Something that I had been able to do by myself now required maximum assistance. In April 2012, I contracted a bilateral eye infection and lost the light perception that I once had.
I now live my life in total darkness. I literally had to start all over again. I had to learn how to use a cane, teach my family and friends how to be an effective sighted guide, and I had to submit an application for paratransit transportation.
Since I no longer could read large-print books, I had to learn, and I am still learning, how to read and write braille proficiently. Until I am up to speed with braille, I'm listening to books from the talking book library while reading braille books to get used to the feel of reading by touch. I have incorporated reading and writing braille into every aspect of my life and I practice reading/writing braille every day.
I attend Independent Living for Adult Blind (ILAB) at Florida State College at Jacksonville where I took classes in Independent Living Skills and Job Readiness. The administrative staff and teachers at ILAB are nothing short of amazing. They treat individuals with respect and dignity and as competent individuals who can accomplish anything, with the right training and attitude. They don’t tell you what you can’t do because you have a visual impairment; they tell you what you can do and show you alternative ways of accomplishing your dreams. They help with things many people take for granted, from picking out your own clothing and making sure that it matches to making sure that a résumé is acceptable and that you're ready for an interview. They also have classes on adjusting to vision loss as well as how to prepare healthy, edible meals.
I am currently taking braille and adaptive technology classes at ILAB. Adaptive technology for low vision and totally blind individuals includes screenreaders, such as JAWS, or screen magnification, like Zoom Text. This technology allows me and many others to use the computer just like anyone else. I'm learning how to use JAWS which reads to me what's on the computer screen. This is very helpful to me since I am a junior at Southern New Hampshire University Online, majoring in creative writing and English and minoring in professional writing. With this technology, I'm able to listen to and actively participate in discussions on Blackboard and listen to my textbooks. In addition, I can compose my assignments and submit them just like any other student.
According to the Research to Prevent Blindness organization, there are 100,000 people with retinitis pigmentosa, which can cause retinal deterioration and blindness. Raising awareness in our community about this and other retinal diseases is important because people should understand the challenges, as well as our hope for a brighter future.
We are capable of doing any and everything that a sighted person can do; we just go about doing things differently. For example, a sighted person or a person with low vision may be able to read regular or large-print books with the help of magnification. For a person who's totally blind, we read and write using braille. A sighted person with a car and a driver’s license can get in a car and go anywhere with no thought at all. A person with low vision who is unable to get a driver’s license or who is totally blind has to plan trips out. Will I take the bus, call a cab or ask a friend to drive? Is it a short enough distance to walk? If I decide to take the bus, will I take a city bus or can the paratransit pick me up? If I have a guide dog, can my guide dog come with me?
The Foundation Fighting Blindness funds research, and advancements in gene therapy and stem cell clinical trials have already restored some vision in people. Through our local chapter, I’m able to connect with other affected families and get involved to boost awareness and raise funds for research. When I attend Foundation outings or events, I feel like I am accepted, and I know I'm not alone in my world of darkness. We share our struggles as well as our triumphs. We share strategies and encourage each other. We talk about finding a cure.
Our annual Vision Walk 2013 will be held at 9 a.m. on Saturday, April 27 at UNF. I encourage readers to mark this date on your calendar and plan to attend … to show your support for those participating in this walk to fight for a cure of disease that's robbing people of their sight every day.
I urge readers to take a moment and imagine their life without vision … doing everything in the dark … a daily reality for many children, men and women. The good news is that if we continue to support research and fight for a cure, one day I or anyone else with this disease won’t have to live in darkness.
Turner is a student at Independent Living for Adult Blind (ILAB) where she attends braille and adaptive technology classes and is a student at Southern New Hampshire University, majoring in creative writing and English and minoring in professional writing. She is wife to Nathaniel Turner and mom to Sanaa, Nathaniel Jr. and Myles.