Braille Monitor                                                 February 2011

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What I Didn't Know about Vision Loss
Confessions of a Confused Federationist

by Debbie Wunder

Debbie Wunder Photo by Abbey HouchenFrom the Editor: I was born totally blind.What little I know about actually losing vision has come from hearing countless stories of people who have gone through the experience. Often I hear these stories long after the loss is complete. The passage of time tends to obscure the details of the transition and focuses more on the outcome. In the same way former smokers don't usually dwell on how hard it was to quit--they recount how they finally put their minds to it and got the job done. They have forgotten or omit the details--the feelings and frustrations they had to overcome to accomplish what they did.

The following article is not an after-the-fact account of losing vision but a thoughtful and candid snapshot of life as it is now. As you can tell from the byline, the article was written by my wife. I am not an objective reader. I hope that those of you who are will find in it the same candor and honesty I see and that what she has taken the time and trouble to write will speak to a part of our community who too often believe that most of us don't quite understand the challenges of functioning successfully with some vision and the difficulty of the transition when we lose some or all of it. Here is what Debbie has to say:

I am a blind woman and have been blind for as long as I can remember. When I graduated from high school, it was the stage of the Missouri School for the Blind I walked across. One of my first jobs was with the Wolfner Library for the Blind and Physically Handicapped, and I've been a patron since I was a teenager. My employment has included managing a cafeteria and a convenience store as a part of the Business Enterprise Program.

The first contact I had with the National Federation of the Blind came during high school, but I didn't join until 1983. Since then I've read our literature, learned from it, and enthusiastically supported the things we believe and say about what it means to be blind. Though I don't think of myself as a writer, sometimes I do write when called on to give a speech at a seminar or convention, and, when someone needs encouragement in the form of a letter or email, I'm glad to sit at the keyboard and offer what support I can.

All of this is to say that I'm not new to blindness or the NFB, but in the last few years I've gone through physical changes that have made me question my understanding of what it means to be blind, the words that once came so easily about my life and the place of sight in it, and my belief in what I can really do as a blind person.

Never have I had what a sighted person would consider good vision. Throughout my adult life I've always traveled exclusively with a cane or a dog or, as now, by using them interchangeably. Until recently, however, my vision was good enough to be helpful, just how helpful became clear to me only after it was gone.

About three years ago I began having trouble with my good eye--the left. Glaucoma was the culprit, and, when the pressure could no longer be controlled with medication, doctors performed several surgeries to get it back in the normal range. Unfortunately my pressure remained extraordinarily high, and the feared damage came to pass. To deal with the damage, surgeons replaced the cornea with living tissue, replaced the newly implanted tissue that my body had rejected with tissue from a different donor (they tried this twice), replaced yet another failed graft of living tissue with a synthetic cornea, and finally performed surgery to repair the retina, which had become detached as a result of all of the trauma to the eye. After each surgery I experienced pain, a brief improvement in vision (never as good as it had been before), and then the emergence of a new problem to solve. Eventually the optimistic message "If this doesn't work, we can always..." gave way to "I don't think this will work, but we can certainly try...."

Through all of this I wrestled with the question whether each new surgery was a reasonable attempt to hold on to what I had or a desperate gamble to keep from becoming blind, which I thought I had been comfortable with all along. When I would think I was ready to stop the surgeries and get on with the rest of my life, the doctors would encourage me, and I would think that perhaps this one last surgery might stop my vision loss. Riding the roller coaster of hope and despair took its toll and added to the downward spiral until I realized I was more than just sad and tired but was actually depressed. I knew that depression was common among those who had had normal vision and lost it, but why did I feel it if I was really happy as a blind person? Was I the woman represented in those speeches and letters I had written, or was I a fraud, pretending to beliefs I really didn't hold about my own capabilities? Recognizing and admitting to these doubts and feelings was difficult, but nothing compared to how hard it was for me to say all of this to the blind people I loved and respected. My husband is totally blind. I wrestled with how to tell him that I was feeling terrible about losing vision. Would he understand, or would he doubt me as I had come to doubt myself?

As hope faded for the little vision I had left, other problems started to pile up. I could no longer shop without assistance. I knew the alternative techniques others employed, but those techniques didn't change the way I felt, which was pushed and rushed when someone accompanied me to the store. It didn't matter whether the person was a friend who was volunteering or a person I was paying. If the person accompanying me was a volunteer, I was imposing; if he or she was paid by the hour, I was wasting our money.

Beyond the guilt at what I believed I should be doing for myself was the sadness at no longer being able to do something I had enjoyed. Shopping by myself had been more than just buying what the family needed; it had been fun. I could be content occupying the whole day just browsing and never spending a dime.

Over time my techniques for doing other things also failed. Once the groceries came into the house, what they were was a mystery. Was the can corn or peaches? Was the package pork or beef? I knew that the solution was to label, but labeling wasn't the system I had always used. Besides, labeling took more time and energy than I had left after a trip to the store, and the thought of having someone identify items while I wrote labels and affixed them seemed too difficult to tackle.

Sorting the laundry before washing also began to require assistance from someone with sight. The same was true for matching the clothes once they were dry. I knew about sock clips, sew-in tags, and separate baskets for whites and colors. Somehow knowing these techniques didn't help much because they took energy and organization to implement, and energy and organization were two things my sadness and depression took hostage.

Before my loss of vision I would have said that I was a screen reader user, but after it I found I no longer enjoyed surfing the Web, and in fact my ability to do so was severely limited. Sometimes what I used to enjoy was doable, but no longer was it fun. The screen reader had always been on in the background, and I appreciated the information the speech provided, but I soon came to realize that I navigated the Web with vision.

Then there was the matter of reading and writing. Before the rapid deterioration of my vision, I could see well enough to read large print with ease and speed, but after the surgeries reading under a good light was at an end. I really enjoy the audio materials I have, and they've always had a place in my love of literature, but they don't replace the feeling of pleasure I once had while sitting with a book and mentally conjuring up the voices of the characters.

Making a grocery list, taking a phone number, or writing down appointments and then retrieving them were beyond me. I had the technology and enough skill to use Braille for simple note-taking, but using it wasn't the way I did my lists, and the transition has been difficult.

As my vision has worsened, I have continued to travel, but the mental cost has been higher and my confidence lower. Even though I've never fallen off a curb or down a flight of stairs, I found myself afraid of both. No stranger to airports and knowing well the techniques for getting around in them, still the mental energy I put into thinking about the way I was going to navigate and the actual energy required to do it was much greater than ever before. I had no reason to doubt my ability, but doubt I did.

Perhaps the thing that has surprised me most about losing vision is the grief I feel at the loss of techniques that once worked for me. My techniques were not those used by people who are totally blind, but neither were they the techniques employed by the sighted. They were adaptations I had invented or learned. If I couldn't read a label, I relied on my knowledge of the shape of the box, where in the store it was located, or where it was likely to be relative to other items I could identify. I was proud of my ability to develop a mental map of the stores I liked, and it is not overstating the case to say that I knew the stores so well that friends and family relied on me to get them where they needed to go in a hurry.

I have had to give up on ways of doing things that once made me independent and have had to relearn skills long since mastered and taken for granted. I have taken as much pride in the alternative ways I have done things as my totally blind friends have taken in the techniques they have learned and used. I may have talked less about the ways I coped, because my skills relied on the V word and because what blind people with some vision see varies greatly from person to person. My silence also sprang from a concern I share with other low-vision Federationists: that we too often fail to get the training we need in essential skills because of what we can see. I wish I had been given the opportunity to learn Braille, but what I know came from asking fellow students. The school for the blind pushed me to read print, never considering that any vision loss for me would mean I could no longer read. I'm sad and angry that I'm not likely ever to read at a rate that will keep the interest of my grandson.

I know most good stories have a happy ending and a conclusion that leaves the reader settled, but my story is still a work in progress. What I have realized is that I do believe in blind people and always have. I believe my ability to adapt will once again assert itself; that I will learn the things I need to know in order to do commonplace things with a reasonable exertion of effort; and, equally important, that I will come to feel as good about my new way of doing things as I once did about my old ones.

Right now I'm still climbing the hill, but I share my story because I have learned three things. One is that others climb with me and need to know that grief, doubt, and second-guessing oneself are normal reactions to vision loss, no matter how little or how much. In the Federation we have people who serve as wonderful examples of what can be done without vision, but we who are experiencing significant vision loss also have one another as we struggle to regain our lost independence.

The second reason I share my story is that I believe it illustrates that those of us with some vision have special challenges and techniques for overcoming them that we should freely discuss and refine. Some of these may not serve us for life, but, while I had the vision necessary to use them, they served me well.

The third reason for sharing is my belief that what I'm experiencing isn't unique and that my progression through learning to live with vision loss would have been smoother had I felt that there were people in my organization who would understand what I was feeling. When I have ventured to share parts of my story with other Federationists who are also in the process of losing vision, I find that they too want to talk about their surprise at how hard it can be, and, like me, they are afraid to say it publicly for fear they will be thought of as people who have never really understood the work and the message of the Federation. I think we have understood, but there are levels to what it means to understand. I have seen poverty on television, but I have come closer to understanding the feelings that accompany it when in hard times I've wondered whether I would have enough money to feed my children or have had to suffer the humiliation of saying to a teacher that we couldn't afford that needed school supply until after the first of the month.

We are told that every cloud has a silver lining. Whether that's true or not I can't say, but I do know that my experience has given me a better understanding of those who talk about the difficulty in adjusting to blindness. I came to this battle as a person already blind. I came already knowing blind people with good attitudes and skills. What I have learned is that seeing the attitudes and techniques in others doesn't mean that they can be easily transplanted into me. I have to make room for them, give them a place to grow, and work through the feelings of loss that aren't really addressed with the advice to just keep a stiff upper lip or just move on. Adjustment is more than knowing. It is a journey I've begun, and with your help it is one I know I will complete successfully.

Giving a Dream

One of the great satisfactions in life is having the opportunity to assist others. Consider making a gift to the National Federation of the Blind to continue turning our dreams into reality. A gift to the NFB is not merely a donation to an organization; it provides resources that will directly ensure a brighter future for all blind people.

Seize the Future

The National Federation of the Blind has special giving opportunities that will benefit the giver as well as the NFB. Of course the largest benefit to the donor is the satisfaction of knowing that the gift is leaving a legacy of opportunity. However, gifts may be structured to provide more:

NFB programs are dynamic:

Your gift makes you a partner in the NFB dream. For further information or assistance, contact the NFB planned giving officer.

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