How I Went Blind...And Then What
by Ed Bryant
(This article appeared in Voice of the Diabetic, Volume 10, Number 4, Fall 1995 Edition, published by the Diabetes Action Network of the National Federation of the Blind. Updated April 2000.)
Diabetes is a sneaky disease. It usually takes 15 to 20 years before chronic complications will be noticed. And, there are many complications that can stem from the disease. Today I will share with you my eye experiences and some observations about blindness.
Forty years ago, I was diagnosed with early onset diabetes. After the initial shock of discovering I had sugar diabetes, and after learning how to give myself insulin injections, my lifestyle returned to one of a very busy and active teenager. The only differences were that I had to give myself one shot a day and watch my diet. Eating a lot of sweets could cause problems.
At first, I did not adhere to good diabetes practices. I was not good at watching what I ate and drank. I did what my peers did, and I felt just fine. I was not worried about my diabetes. Then, after I'd had the disease almost 16 years, I began to notice some blurred vision. It was like looking through a smoky haze.
At first, I didn't pay much attention. In St. Louis, where I was administrative manager for a corporation specializing in child photography, my job required a lot of paperwork. I assumed I needed to see an eye doctor and get glasses. But, I didn't get glasses, and my vision deteriorated with time. Finally, admitting I'd been foolish, I saw an ophthalmologist, who diagnosed proliferative diabetic retinopathy. I had no functional vision in one eye, and the prognosis for the other was not good. The doctor recommended I see a diabetes specialist and get my disease under good control. Then, if possible, he could give me laser treatments.
I immediately saw a physician who specialized in diabetes. I worked to regulate my disease far more closely. In time, with my diabetes under good control, the vision in my one functional eye became substantially better. I was elated. I could see well enough again to do almost anything. Working as a photographer, I had driven in every state in America, and of course I thought driving a car was essential to everyone's lifestyle. Now I could even drive my little blue sports car again!
When I revisited my ophthalmologist, we decided to try vitrectomy surgery in my bad eye. With luck, it would restore some of my vision. The surgery failed, as did a second vitrectomy on the same eye several months later. I knew that by law I was legally blind, but I didn't consider myself blind, since I had so little trouble getting around and doing what I wanted to do.
During the daytime, my only troubles came while facing direct sunlight. My difficulties were at night. Unless an area was well lit, I had trouble seeing where I was going. Late one evening I started walking home. The area was well lit, but as I progressed, there were fewer and fewer street lights. Soon I could barely see my path. At a wide point in the sidewalk, landscapers had planted a preposterously huge tree, right in my way! I was walking at a pretty good clip--I ran into the tree. After my very "close encounter," and a few frank words with that tree, I walked the rest of the way home. As I look back, I can only laugh. If I'd had more wisdom, I'd have been using a long white cane. Then I could have avoided both possible injury and the tree.
Several years later, my employment was phased out. I found myself out of work. I moved to Columbia, Missouri, home of the University of Missouri. I would work out my future from there. I had been offered upper middle management positions with several different companies, with very lucrative salaries.
As soon as I told prospective employers I was legally blind, or that I had "a severe eye problem", their offers no longer stood. The jobs were either "no longer available", or offered to me at wages less than half their original offer. It didn't matter that I could do the work proficiently. My experience in business administration and public relations didn't count. When employers heard the words "blind" or "legally blind", they immediately assumed I was incapable of doing the job.
Out one night in Columbia, a friend accidentally poked me in my good eye. I felt excruciating pain. My ophthalmologist recommended a retina surgeon in Memphis, Tennessee. The specialist told me the eye was in bad shape; however vitrectomy surgery might help. Once again, I underwent surgery. However, it only allowed me to see in a very limited way.
In the following few months, I lost my vision completely. I was totally blind. I lived in an apartment, and I really had no way to get around. After managing my personal business matters, after being independent for years, I found it very difficult to let another person become involved. My parents offered to build an extra room onto their home, so I could live there. Although the offer was loving and gracious, I would never consider such a thing. I'd always been an independent person, and if I'd moved into my parents' home, on a rural route, I would have been more or less trapped, as there was no bus service in the area, and the cost of a taxi to and from the country was very expensive. I couldn't expect my parents to provide my transportation everywhere. They had their own life!
I was a very active person, used to travelling. I decided to keep my apartment. I had no wish or reason to become dependent on others. I knew I was perfectly capable of doing the things I'd always done! My biggest problem was not being able to draw up my own insulin. My mother drew up a seven-day supply, every week for three or four years, until I learned of devices that allowed blind persons to accurately draw up their own insulin. Such a device allowed me to self-manage my own disease.
My blindness made me angry and frustrated. Like so many newly blind folks, I felt trapped and limited in what I could do. The fact was, I was blind. But it seemed unreasonable to give up and abandon independence, simply because I couldn't see. I began to realize that in actuality, I wasn't limited. I could function very well in my apartment. I knew where everything was. And with a little ingenuity, I discovered I could cook and do anything in the kitchen. Every day I discovered alternative techniques that allowed me to do things just as well as I did when I was sighted. I was learning how to help myself.
I telephoned Missouri's Bureau for the Blind, and asked for a white cane, and someone to show me how to use it. After waiting two or three weeks, I got angry. How could I be independent if I had to stay in my apartment? So one day, I took a hatchet and a kitchen broom, and went outside, using my broom as a cane. I headed for a spot where I knew a little tree was located, and I chopped off a long branch. Returning to my apartment with my prize, I chopped and whittled until the branch developed into what I called a cane. I didn't know anything about cane dimensions, but I figured it should be about as tall as I was. I ended up with a makeshift cane about six feet long.
I went for short walks. I chuckle about it now, but I was probably a danger to society with my tree branch cane. I was certainly a danger to myself. The end of the cane kept getting stuck in the ground, and I came close to rupturing my midsection on many occasions. Even though my cane was homemade, out of a tree branch, it helped me to get around the apartment complex and many nearby roads. I had all the confidence in the world.
At last, the man from Bureau for the Blind arrived, bringing me a better cane. After he left, I went for a walk. The top of my new cane reached somewhere between my navel and breastbone. I had to bend over as I walked with it, and it was obviously too short, but I could do a lot better with it than with my tree branch. I knew where the city bus stopped, so I took a bus downtown, and spent the afternoon exploring.
I never had any formal mobility lessons, but I trained myself without great difficulty. I finally moved to the downtown area, primarily because there were sidewalks. I lived in a high-rise apartment close to the University. There were many social activities, and something was always happening. There was plenty out there for a guy like me.
At some point I found out about the National Federation of the Blind. After attending a few meetings, I was more impressed with it than with any organization I had ever been involved in. It was a united body of blind people, doing everything possible to serve all blind people, without regard to the cause of their blindness. Federation philosophy ran parallel to my own observations, made since I had gone blind, that much of the general public simply does not understand blindness. Many friends, neighbors, and family simply pity a blind person, thinking he/she is not capable of doing very much. Along with the pity and sympathy comes a great deal of discrimination, due to society's many myths and misconceptions about the blind. The situation is improving, but we in the National Federation of the Blind still need to spread the word.
The key word is education. We Federationists are aware that with proper training and use of alternative techniques, we can do just about anything we desire. The NFB knows that society's perception of "inabilities" can mislead blind people. If all they hear is how they're "helpless", how "they can't", they may become convinced, and think themselves into helplessness. Such holds true for the blind diabetic, told incorrectly by so many that he/she cannot draw insulin, test blood glucose, or perform the other tasks of diabetes self-management.
"Limitations," for most blind persons, are self-imposed. The NFB strives to enlighten society about the capabilities of blind people, while it strives to improve the way many blind people think about themselves. We encourage them to think "I can" rather than "I can't". We are a self-help and advocacy organization. We show blind folks they are not alone, and that, whatever their situation, they have options. Our members are living proof that blindness is not synonymous with inability.