Coping

Macular Degeneration: I’m Okay, but What Happened to You?

By Betty Mathews, DrPH

Visual impairment is an incredible shock for it changes almost every aspect of one’s living style from driving a car to threading a needle. How one adjusts to this dramatic change depends upon the choices made. One may choose self-pity, become a couch potato and dwell on the negative. Or one can embrace life; begin the task of learning new ways to accomplish many of the activities one did with vision. By choosing the latter, I discovered that I could do far more than I thought possible. Soon I had identified when I needed visual help and when I did not. As I gained confidence, I became less aware of myself, but acutely aware of reactions toward me by others.

Early in my experience of visual impairment I explained to my neighbor, with whom I had a casual but friendly relationship, that I was no longer able to identify her by her facial features although I was visually aware of her presence. That was eighteen months ago and to my astonishment, she has not interacted with me since. Why was this happening? Was it related to my vision loss or purely coincidental? I tried to recall my own sighted experience with blindness. I remembered walking across a college campus with a blind student. She was finding her way with the aid of the white mobility cane. I wondered how she was able to locate the building she needed. Did she count steps? Turns? Did our conversation disturb her concentration? But alas, I didn’t ask her. Why? Did I fear that calling attention to her blindness would embarrass her, or embarrass me? On reflection, it was obvious that my own feelings prevented the questions. I just didn’t get it! I realized that as a sighted person, I equated blindness with total darkness. I did not understand that blindness occurs in many forms and may have varying degrees of vision present.

While a recent houseguest, I awoke one morning to the sounds of busy people. I left my bedroom to find everyone scurrying about and, although I said good morning, there was no response. I felt quite like a wall hanging that one passes frequently yet never sees. As people were obviously preoccupied with matters unknown to me, I returned to my room to be out of the way of the hustle and bustle.

Shortly thereafter, I was called for breakfast. One other person was seated at the table. I offered a morning greeting and sat down. Soon my companion picked up my pillbox and asked, “Have you taken your pills?” I thank her, took the bill box, placed it back on the table and continued with breakfast. After several minutes, her question once again echoed in my ears. I felt the flush in my face as I boiled inside. Although she did not say it unkindly, her words sent shudders of dread through me. This behavior revealed to me that I was perceived as a senile old woman who could not even remember to take the pills in front of her. I hesitated wondering what I could say to correct such in impression. “I know that you want to be helpful so let me clarify that I am aware of the pill box and its meaning. Although my vision is impaired, both my memory and my head seem to be operating as usual. Normally, I take pills after the meal.”

This year, I completed a rehabilitation training program provided by the Veterans Administration Blind Center. Thirty to thirty-five veterans participated in this one-on-one training at any one time. I associated with people who had visual difficulties from total blindness to various degrees of visual impairment.

We all dined together in a large dining room. I quickly became aware of my personal comfort in this environment. There was a climate of openness, acceptance and understanding as people shared experiences about vision loss. It was simply a matter of fact. The interaction was natural and without embarrassment. It was as if there were a shared need to talk about vision loss with others who had experienced and really understood the burden. This uncommon experience of discussing vision loss seems to redefine it as a natural phenomenon. As I explored with these men and women, each had a story about being perceived as a physical invalid or as mentally impaired. Of course, they were neither.

It appears that visual impairment marks a person as different from others in such a way that some people are so uncomfortable that they must categorize these differences with something familiar to them such as invalid or mentally impaired. Still others may ignore your blindness and you along with it as a means of disposing of a problem that they find difficult.

More important for those of us who experience visual impairment are friends who really care and want to be helpful. This is not easy. A friend recently exclaimed, “I keep forgetting that you can’t see. You look so natural and move about with such assurance that I have to keep reminding myself that in many ways life is difficult for you now.”

Macular degeneration, when wet or hemorrhaging runs out like the sands in an hourglass. As this occurred, I realized that whatever I set down was lost to me. This new world required that each tool, utensil or artifact that I needed to use must have its own place in my home. This had to be done with my personal logic in order for me to remember where to find a tool and correctly replace it after use. This was a long-term project with top priority assigned to the kitchen. When completed, I could manage kitchen chores successfully without relying on vision.

A dear friend, who later came for the weekend, discovered a crumb in a utensil drawer. She decided to be helpful by cleaning all the kitchen drawers. My confidence bolted and left me for a moment as I visualized the new order of my kitchen slipping away. “Oh please don’t for I’ll never be able to find anything!” “Oh,” she responded, “I will put it all back just as it was.” She just didn’t get it! As hard as she tried, she had only her own logic to guide her, not mine. It became painfully clear that no one could re-organize for you. It just doesn’t work.

Once again, I thought about being sighted. Could I have imagined what it was like to live with blindness or even visual impairment? The answer was an emphatic NO, it was quite impossible! This notion was reinforced by a friend with whom I correspond. She kept writing how sorry she was about my vision. I asked her not to express sorrow or sympathy as I couldn’t afford the luxury, but her expressions of empathy were welcome. She indicated that she could not empathize because she had not experienced vision loss. I concluded that she was right. There really is no way to understand visual impairment short of personal experience. Those of us who are experiencing vision loss often find it difficult to tell it like it is. Even a good description, however, cannot compete with life experiences. Special glasses that may come close to simulating visual impairment do not take into account the ever-changing kaleidoscope of vision with macular degeneration. More often than not, sighted friends and helpers are left with assumptions about living with visual impairment that seem distant from the reality we experience. I have finally come to the conclusion that the hope for the visually impaired and our sighed friends is a double modicum of PATIENCE!


About the author:

Betty Mathews is a Doctor of Public Health and Professor Emeritus, Behavior and Health Education, University of Washington.

In December 2002, she was driving home from the market when the white lines in the street began to square dance. Since then, she has been legally blind with macular degeneration.

© by Betty Mathews, DrPH 2004