Coping

You Have Macular Degeneration

By Betty Mathews, DrPH

Betty Mathews is a Doctor of Public Health and Professor Emeritus, Behavior and Health Education, University of Washington. Currently, she lives in Green Valley, Arizona with her dog Sasi, who owns the home they share.

A time was when seeing with my eyes made it possible to accomplish the goals of every day living. More often than not vision occurred without my awareness. It was as if seeing is being. As my vision dims, other than sight is required. More and more the mind comes to the rescue by finding new ways of achieving goals for which sight alone was used. Thus, the title FROM MY MIND'S EYE was coined.

Macular Degeneration! No, that couldn't be happening to me.

I knew anatomy and a little about Macular Degeneration at least cognitively, but I had no understanding of its emotional impact.

My first shock came after shopping with friends. That evening I carefully noted my purchases in my record book. Although I couldn't see very well I certainly had not forgotten how to write. The following morning I borrowed a magnifying glass to see my record book. Alas! What I saw there were only hen scratches going up and down hill. To my horror I was illiterate! That was unacceptable. Even a retired professor should be able to read and write. My first task was to find an assistive device that would enable me to read and write. Although I solved that problem there were still other surprises to come. As I was pouring a glass of water I was astonished to find the water all over the counter. One day I decided that making muffins out of a box was so simple even I could succeed. First, there was the question of how to measure a cup of water. Then, how do I determine if I have stirred too much or too little. Assuming I had managed these hurdles, I began filling muffin cups with batter. The center of the cup eluded me and when I filled it more to one side, the cup turned on its side and batter was everywhere. With frustration and tenacity I finally removed hot muffins from the oven with flattened tops but muffins all the same. I decided that obviously I needed more help.

Class for Visually Impaired

I then contacted the State Association for the Visually Impaired and learned that there was a class beginning in my area. I learned much to help me carry on normal living from counting the money in my wallet to cutting meat on my plate without the benefit of sight. Lighting and simple assistive ideas and devices were demonstrated. In addition application was made for me to have talking books through the congressional library network, a closed circuit radio from which I could hear the local newspapers read. I was registered with Quest for 411 service for the visually impaired that eliminated my searching phone books or dialing numbers, both of which had become difficult. In addition, home visits were made to mark buttons on appliances, such as stove burners and computer keyboards, that I might easily identify what I was pushing. In addition I learned to use a cane properly so I could identify obstacles on the street as well as cross it safely. To my amazement all these services were free! As I live alone, they enabled me to maintain my cherished independence and get on with life. I decided that this wasn't going to be so bad after all. I set about simplifying my kitchen, labeling cans and boxes in the pantry so I could identify them by using the peripheral vision I had.

The White Cane

The class also encouraged the use of the white cane. Here I drew the line. I was not emotionally ready to advertise my impaired vision. However, I soon found checkers in the grocery store impatient at my slowness, but when my friend indicated to them I was blind everything changed. I promptly was able to make that white cane part of my identity.

My Friend's Response

An experience strange to me has been the response of some acquaintances toward me. Some ignore me altogether, others express sorrow and then steer clear of me. The message they are sending is that if I cannot see them, then I must not exist. I find this amusing, but at the same time I realize these persons are made uncomfortable by me and are at loss for what to say. Obviously it is up to me to help by presenting myself as essentially the same person and my vision loss need not get in our way. I have found there are still many good things in life despite vision loss. But are there problems? You bet there are.

Simple Tasks

Never have I experienced such incredible frustration trying to do what were once simple tasks and failing so often that I am reduced to tears. Often anger takes over because I have become so inept. Then, I tell myself "Okay, have your cry, indulge in grief over your loss and move on." I have found some difficult tasks can be learned with a little effort. For example, teaching my fingers to put those tiny batteries into my hearing aids. I discovered I was actually more efficient without vision. There are problems, however, that require sighted help such as locating a misplaced item that on some occasions I can find, but only by accident.

Wet Macular Degeneration

I knew nothing about wet macular. I was told it could be treated and it tended to progress more rapidly than dry macular. That was an understatement. It progressed like wild fire! Each week brought greater loss of focus and sight. After the Lazer treatment my vision was reduced even more for a few days. It was like a preview of the future. This filled me with absolute terror. How could I ever manage? A day of severe emotional stress follows until I remember that many chores are waiting. After the last treatment I clipped and groomed my toy poodle, Sasi. Although I couldn't see, my hands seemed filled with the knowledge of experience. I only needed to trust them. According to my friends Sasi looked elegant!

What I have learned

I learned three things that day. First that I can do more than I realized without vision. Second, as one becomes engaged in pleasurable activity, the worries and fear seem to melt away. Will such despair come again? Yes, probably again and again, but I am learning that to do something I really enjoy will make a difference. Finally I learned that most important is to identify what I can do and where help is necessary instead of fussing about dependence and independence.

Helping Relationships

The success of the helping relationship requires open communication between helper and helpee. There is a delicate balance between too much help and too little. Complicating the situation is that the balance may shift back and forth frequently. Both helper and helpee need to be alert to such changes and talk about them to each other. I am experiencing impaired vision as needing a specialized kind of help different from that usually associated with the caregiver.

For example, I can do everything I did before Macular Degeneration visited me except see. Even though this is a big exception I am still able bodied.

My helper must use her eyes to replace mine for seeing those things that cannot be done otherwise. I want her to tell me when I look presentable and when I do not and to be aware of cleanliness in my household. I want to convey my appreciation of her help by my behavior toward her. I want to maintain a positive attitude, share experiences and laugh together at the funny foibles that occur. Very important for me is that she is comfortable about leaving me alone for a week or two to visit friends or whatever.

The First Seven Months

If I have learned anything worthwhile these past seven months it is: that it is okay to grieve my loss and then move on; that frustration can be overcome with patience; that one is happier with a positive upbeat attitude and a sense of humor than without and finally, that excessive independence like excessive dependence are both inappropriate.

© by Betty Mathews, DrPH 2004