“Retinitis Pigmentosa” sounds like a rare breed of hog. It doesn’t sound like an adjective to describe a person. At least, it doesn’t sound like an adjective I would want to describe me. Yet it does. As much as it describes my daily life, it describes me.
Retinitis Pigmentosa (RP) is the name given to a group of hereditary diseases of the retina of the eye. The retina is located at the back of the eye and acts like film in a camera, receiving and processing all of the pictures that come into view. The retina is a delicate layer of cells that pick up the pictures and deliver them to the brain. In the human retina there are two types of light sensitive cells-rods and cones. Cone cells are located in the center of the retina, the Macula, and are used to see color and precise objects like small print. Rod cells are much more numerous and are necessary for peripheral and night vision. There are about 120 million rods in the human eye, mostly at the outer edge of the retina. In a person with RP, a breakdown has occurred in the function of the rods.
Since the retina is so complex, there are many forms of RP, and as a result, many different symptoms. But the basic deficiencies in all people with RP are a loss of peripheral vision, often called “tunnel vision”, and poor night vision, often referred to as “night blindness”. RP is a degenerative disease, which means that rod cells will continue to dysfunction over time, causing the further loss of peripheral vision but eventually entering the central vision, leading to total blindness. This happens at various times depending on the person, sometimes occurring in young children but many times not until middle-age or beyond. Some people may be diagnosed with RP as a child if their vision difficulties are apparent, and others may not be diagnosed until a much later age.
Retinitis Pigmentosa is a genetic disorder; my parents both unknowingly carried the gene, which left me with a 25% chance of having RP. As chances often have their way, I was diagnosed with RP when I was 5 years old, at which time I had already lost a significant portion of my vision. But I am told that the vision loss occurs at such a slow pace that people with RP often adjust to the vision loss in such a way that they do not notice the changes at first. Fortunately, I have not lost any noticeable vision since that point and I maintain a significant portion of my central vision, which is relatively normal at 20/50 in my right eye and something ridiculous, like 20/400 in my left eye. I have grown accustomed to the difficulty of describing what I see to people since it is the only vision I’ve ever known.
But from the vision I do have, I’ll try to explain how I see my surroundings. People often wonder how “much” of them I can see when I’m having a face-to-face conversation with them. If I look at a person’s face up close, I see parts of their face. If I take a few steps back, I can see their face in its entirety. When I try to show people what my line of vision includes, I usually hold a pen directly in front of my right eye as an example (I don’t use my left eye because the RP already interferes too much with my central vision). If I move the pen slightly to the right, slightly to the left, slightly down, or slightly up, while still staring straight ahead, it disappears from my view. But if I keep moving the pen further to the left, right, up, or down it returns back to my field of vision. In other words, I can see it when it is directly in front of me and to the far left, right, top, or bottom, but there is a large gap in between the center and the sides that I cannot see. It is like looking at a one-dollar bill, and seeing George Washington’s face along with the outer corners of the bill, but nothing in between.
It’s not as if the spaces that I cannot see are black or white or anything at all-they’re just not there. I don’t even think about objects that I run into as being behind my “blind spot”; they just don’t exist (at least until they smack me). It’s like seeing behind you-it’s not a black void behind you-it just doesn’t exist because your visual field does not extend behind you. It makes me wonder whether people who are born completely blind really just see black nothing (like when we close our eyes) or whether they really see nothing.
In school, I had a “Vision Itinerant” (as Cook County Educational Services called the position). Her job was to make sure I went through school without difficulties. She used to enlarge print, which actually only made it more difficult to see. Since my visual acuity is normal, but my peripheral vision is so scattered, it was as if she made parts of the print disappear when she enlarged letters. I remember seeing a packet of my Vision Itinerant’s evaluative information addressed to my parents sitting on our kitchen counter when I was in fifth grade. I angrily ripped up the papers and threw them in the garbage, never telling my parents they received such a report. The only thing her reports ever seemed to say were “Joy refuses to ask for help”. Did it ever occur to her that I didn’t need the type of help she offered? Did she ever come to my gym class and step in front of the ball before it hit me in the face to the hysterical laughter of the other children? I didn’t need her to enlarge my print-I needed someone to tell me that I wasn’t as awkward and awful as I felt. Though I was young, I was old enough to be angered by people’s attempts to evaluate what they cannot understand.
I always felt I should possess some amazing talent to reconcile my missing rods and cones. Perhaps if I stood out as a musician, athlete, or scholar, I would not stand out for my lack of vision. My parents took me to singing lessons with a nice, old nun in a dark, scary convent when I was eight. Yet “Go Tell It On The Mountain” practiced 50 times over did not improve my voice. I auditioned for the Young Naperville Singers in hopes of improving, but the director said she had heard kindergartners who could hold notes better than my third grade voice. That ended my hopes of becoming a female Stevie Wonder.
I also tried my luck at cross-country, a fabulous sport where there is no ball to weave in and out of my speckled basket of vision. I was a good runner, but didn’t stand out as the one who won the races, and in my narrow vision of compensation I wanted to be that winner.
I think we’re taught this type of compensation in America. If you’re not right-brained, you better be left-brained: and if you’re not left brained, you sure as heck better be right. If you’re both, you’re blessed. If you’re neither, there’s something terribly wrong. If you’re overweight, you better have a superbly gregarious personality. If you’re lacking in looks, you better be a genius. And on it goes.
Sometimes we compensate with lies. I know I have. When people point to an object of interest, whether out the car window or down the street and say something to the
effect of “look at that”, I oftentimes have no clue what they’re looking at, but I say something to the effect of “oh- wow”. Any response similar to “oh- wow” works with most anything. It’s not that I’m uninterested or that I enjoy faking interest, I just get so tired of trying with all the vision I can muster to see the particular object a person is pointing to, while they repeat “Don’t you see it? It’s right there” a few times until the object has passed, and I am left feeling somehow isolated. I compensate in the same awkward manner when I trip or bump into objects (or people) due to my vision. I will say things like “I’m such a klutz” or “Gosh, I’m so tired and disoriented today”. Why can’t I just say, “I’m visually impaired”? Those words never come out of my mouth; they sound too definite.
Last summer I stopped at a restaurant to use the bathroom. It was very dim inside and I wandered around looking for what must have been the obviously placed bathroom. When I finally reached the bathroom door, I tripped over a low stepping stool on the way through the door. A woman working at the restaurant turned to me and asked, “Have you been drinking young lady?” I was so taken aback that “uh no” was my only reply. Her words stung in a place I couldn’t define. I cried when I got back into the car, and when my husband asked me what was wrong, I said, “I feel like I’m always drunk”, to which we both started laughing. Sometimes laughter compensates.
I am impressed with the human body’s ability to compensate for its losses. While humans cannot re-generate cut-off body parts like certain reptiles, the human body has its own way of balancing itself. People born without arms have an amazing way of doing almost everything imaginable with their feet. I once knew a guy with no arms who drove with his feet, made sandwiches with his feet, and even played the guitar really well with his feet. It was incredible to see those toes developed to their full capacity. While I do have occasional run-ins with inanimate objects, I am continuously surprised by the number of times my senses of hearing and touch have protected me from danger. In familiar places, I can walk alone at night and get around very well even though I can see virtually nothing. I memorize stairs without even thinking about counting them. My other senses help me “fake” normal vision in many situations. When I cross streets or walk in crowded areas, for example, my hearing can tell me which direction a car is coming from, where the other fast footsteps are in relation to my own, and even whether something out of the ordinary is taking place around me, such as construction. My senses obviously cannot compensate for my vision completely, as many scrapes and bruises have reminded me, but they do an efficient job on a daily basis.
My sense of touch is the most useful. I started taking advantage of it when I was in elementary school. My Vision Itinerant (spoken of so fondly earlier) used to teach me to feel around for objects with my hands. She would pour a huge can of tiny beans all over the floor of a small meeting room, and tell me to pick all of them up. If I missed any, I would have to feel around across the floor until I found them. How uplifting to be crawling around on the floor like a lost animal while the other children read books. But this little exercise did start to help me when I lost coins or other small objects at home. If the object was out of my line of vision, I just felt around for it. This works especially well when searching for white light switches on a white wall. When I used to do this in front of my dad, he would tell me to stop feeling around “like Helen Keller”. I occasionally still feel around for things I lose at home, but only when no one is watching me. Sometimes we learn that certain forms of compensation are unacceptable to others.
I am considered “legally” blind yet most people have no idea until they’ve spent a lot of time with me. In order to receive assistance with my college education, I was required to see an Ophthalmologist who would assert whether my visual fields were below 20 degree, which is the limit for the definition of legal blindness. I felt somewhat odd when I found out that I do fit the definition-as if the “legal authorities” had spoken and I was officially disabled. Many people have wheelchairs and handicapped stickers for their car to tell them that they are, in society’s mind, differently-abled. I don’t carry a white cane. I don’t have a Seeing Eye dog. And I don’t wear dark glasses. In a way, I felt like I had cheated somebody because I can see adequately compared to many people. It doesn’t seem fair that someone who needs a cane should fit the same definition as someone who can read regular print. The label “legally blind” did not change any aspect of my life, except that I can shock people who ask me why I can’t drive a car by replying, “Oh-it’s nothing-I’m just legally blind.”
Society has a strange way of “looking” at vision-it’s everything that points toward knowledge and success in many ways. “Find a vision for your life”, “Envision your future”, “Reflect on your past”, “Imagine a world”, “Look at it from a different perspective”, “Picture this”, “Mirror that”. Philosopher Richard Rorty explores the notion of this ocular imagery in his book, Philosophy and the Mirror of Nature. He wonders at the idea of “looking at something (rather than, say, rubbing up against it, or crushing it underfoot, or having sexual intercourse with it).” I remember looking at a job description that said “must have an eye for detail” and wondering whether I possess such a qualification-I certainly miss a lot of details with portions of my vision gone. Rorty referred to this imagery as a “historical phenomenon of mirror-imagery, the story of the domination of the mind of the West by ocular metaphors, within a social perspective”. I think society would do well to submit a “revision” of such language, although I’m not quite sure we’re up for that type of challenge.
At some point in my attempt to compensate by searching for a talent, I thought I might become a famous novelist. But when my high school English teacher put it bluntly-“You’re a good writer, but you lack knowledge,” I took her words as a sign. So, I dropped out of all four of the English classes I was signed up to take the following semester and took to learning. Although my teacher probably wanted me to take up math and the sciences-subjects I really lacked knowledge in– I began to study my favorite topic-people. I went on to college and studied sociology and anthropology, but learning about various cultures vicariously wasn’t enough. I needed to see people firsthand. So, taking the “simplest” route, I accepted a job that required more driving than most truck drivers encounter-casework for foster children in the Chicago suburbs (where public transportation is an oxymoron). Whether by foot, train, plane, taxi, bus or the automobile of my chauffeuring husband, I made it to my appointments-and usually on time.
Detailed scheduling and planning became an understatement as I strove to excel in a job that is difficult and stressful for the perfectly-sighted, yet nearly impossible for a visually impaired person who cannot drive themselves, much less the foster children, to various appointments such as courthouses, doctor’s offices and schools.
With the majority of my energy used up on transportation issues, it was not a career I could stay in long-term, but I stayed just long enough to prove a point- I could make it work, even if it was just long enough to gain the experience I needed to lead me to other jobs that did not require driving. My yearlong dabble in case management also allowed me to observe people, as was my original intent. Observing abused and abandoned children whose existence in each foster home depended on the ways they chose to compensate for their lack of loving biological families showed me a lot about the human capacity to adjust-and a lot about when that capacity reaches its maximum. I also noticed a tendency of my co-workers and I to focus too much of our attention on the children’s negative compensative behavior, such as hitting and kicking, and not enough on their positive attempts to please people with artwork and storytelling. This tendency is not a fault of the social service sector alone, but of Western society and our continual focus on self-sufficiency.
I’ve come to learn that we should concentrate on our strengths, but we shouldn’t rely on them to block out our weaknesses. Our weaknesses will still be there, and we must deal with them. Our equation of wholeness is flawed-a visual impairment is not a -50 and a great voice is not a +50. A visual impairment could be a +10 and a great voice a -25, depending on how they shape and teach us as people. I don’t want us to look through this narrow tunnel of integers anymore-there’s too much we’re missing.
I don’t wake up every day thanking God for my dwindling vision, but I do wake up feeling thankful for the gifts my visual impairment has given me-sensitivity to others, intuitiveness and the ability to observe the world through a different set of lenses than the average person.