Reflections on Being Blind In A Sighted World
Since I lost my sight, many people have commented on how well I have adjusted. Often times I think to myself, "Oh, if they only knew."
Intensive laser therapy for a year was challenging, but it was almost impossible to explain to people that at times I could see clearly, yet at other times my vision was almost completely blocked from hemorrhaging. On the practical side, I was given everything medically possible to restore my vision through the guidance of my ophthalmologist. But the emotional side created a great amount of stress and anxiety. In all ways possible, I tried to maintain my lifestyle. As foolish as it may sound, I fought not to give up driving. Oh, how I loved to drive; it was time for reflection, thought organization, and it meant independence. Recreational and sports activities were limited to walking, which was time for the time. I hoped that these sacrifices would be temporary at best.
When my ophthalmologist scheduled the first vitrectomy, I was still optimistic and of the attitude that I needed simply to take care of business. Technically, the procedure went well. For the next several months, however, my activity was extremely limited for recuperative reasons. But even this was relatively easy to handle, since all signs were for the most part positive at this point. The amazing things I noted were people's actions and reactions.
When I was in the hospital, friends and family were supportive, but they had no idea what to say. Some friends stayed away. They will never know the hurt that caused. I found myself being optimistic for everyone else's sake. Mom and Dad would visit and would be noticeably apprehensive and anxious. In front on my family and friends, I was running my life.
The medical staffs were an interesting mixture of individuals. Some of the staff was excellent in dealing with me as a person first, but there were others who continually interacted with me first as blind, and second as a person. This second group would be appalled at the fact that I was typing letters, making phone calls, and doing what would generally be considered normal activities for someone in a hospital.
This was the group of people who continually tried to over-help. I would have the layout of where my personal items were in my mind, and then they would feel that the flowers should be elsewhere, or the water pitcher should be in another place. They would then move these things without telling me. For some reason, it was hard to communicate to these individuals that they need only ask me if I required assistance.
The first group I mentioned above was great. These individuals realized that I had things organized and preferred to do as much as possible on my own. They made that first vitrectomy experience tolerable.
With vision in both eyes blocked, one by a light-occluding sterile patch and the other by severe retinal hemorrhaging, the recuperation process was a challenge. My optimism was still present, as long as my physicians helped me to keep it. One of the most traumatic experiences during this period was when some of that optimism was burst. I was walking through my mother's home when I realized that I could make out images in the kitchen. I could distinguish the counters and the refrigerator as distorted wavy images in my operated eye. And then my vision went black, with an impenetrable tight array of a black spider web-like image. I was on the phone with my ophthalmologist within minutes. After describing what I could discern with my eye, he quietly stated that the retina had apparently totally detached. I never saw anything out of that eye again: no light, no images, no shadows, nothing.
Soon it became apparent that if we were going to have any luck in saving the useful vision in the other eye, I would need to undergo another vitrectomy. My anxiety increased, as well as that of my parents, my siblings, and my friends. Part of me was doing everything in my power to regain some useful vision; the other part of me was scared.
Many of these same staff from the first procedure was there at the hospital. I will never forget one staff member who came in and was upset that I seemed to be handling things so well. She could not conceive of the fact that I carried on as normally as possible, i.e., that I needed no assistance to eat, dress, or bathe; that I continued working on civic projects and other things while in the hospital and during recuperation; or that I had already ordered several different timepieces for the blind. She was upset that I did not outwardly go through a rejection, mourning, and hatred period. I believe that although some people may have to do so in a very demonstrative manner, others do not. Everyone handles such personal losses in his or her own way.
The long recuperation after the second Vitrectomy resulted in a decision to attempt a third try to restore the retina in the eye that had undergone the first Vitrectomy. I traveled to Johns Hopkins, where the doctors believed it would be worth the attempt to regain at least some light and image perception. Being so far from home, family, and friends gave me a lot of time to think. Reality was giving up driving permanently, never reading written words again, giving up tennis and other sports, giving up my favorite activity (photography), and giving up so much of my privacy. The thought that still brings tears to my eyes is not being able to see my little sister grow up or my nephews and nieces grow to be young men and women.
The third procedure was unsuccessful.
Since May 1981, I have been totally blind in both eyes. By necessity, I changed my educational and vocational pursuits. I reestablished myself in Allentown, Pennsylvania. People still say that I handle blindness very well. Much of my pain is internalized by necessity. That is the kind of person I am. It hurt when I went to my college reunion and two dear friends avoided me when they saw that I was blind. They could not handle the blindness. Their reaction may seem ignorant, but it was an honest reaction. To have people turn to me and say, "Aw come on, Ray, I know you can see something" may seem complimentary at first, but do these people for one minute think that someone would fake total blindness? Not being able to see my kid sister or my best friend on their wedding days was tough to handle.
Many people become somewhat annoyed with my constant requests for detailed descriptions of people, objects, and surroundings. What they need to realize is that I am from a sighted world. Constant visualization of my surroundings makes them more real. People are not just names; they have height, weight, bone structures, complexions, hair color, and features that make them different from everyone else. Colors, shapes, configurations, styles, packaging, architecture, designs, and graphics are important to me.
They keep the world I live in a real world. I function as well as I do because I visualize everything that I do. That is what is natural to me.
I will continue "handling my blindness."
One of the more challenging aspects of living with my blindness is working with friends, business acquaintances, and social acquaintances in overcoming their preconceived notions of blindness. It takes most people a bit of time to overlook the blindness and see me as a person instead. It is impossible to express the frustrations of interviewing for a job where the interviewer never quite gets to talking with me about my skills and qualifications, but instead talks only about my blindness; or when shopping for a suit when the sales specialist tries to sell me something that obviously is not the style or color 1 want; or when waiting for a driver who, when he arrives late, reacts as if he figures I had nothing better to do but wait.
If I could, I would love to be able to sensitize the world to the fact that I am a person who likes to do the same things that everyone else likes to do. I still ski, bowl, dance, workout, get involved in civic projects, take care of a home, cook, read (through taped books and magazines), shop, and go to work every day.
"Oh, if they only knew"
