Coping

Macular Degeneration and Denial

By Betty Mathews, DrPH

Denial is not a river in Egypt. It is a scream of fear and anger. It is the only control I have for what I cannot really control. How can I ever manage a future without sight? If I tell myself it is not happening, perhaps it will go away.

Every thing I do, no matter how small or unimportant, requires seeing. I simply took vision for granted because it has always been there. I cannot believe this is happening. Surely it will go away if I just give it a little time.

Although my vision loss was temporary as I viewed it, my friends kept pressuring me to buy things that would help me to see better. I insisted that I did not need such items and struggled on. However, this insistence by friends created conflict. It was a struggle between not accepting my vision loss, yet seeing with increasing difficulty. The more my vision declined the more frightened I became and the greater my conflict. When the Retinologist looked at the optical photographs he said to me: “Your eyes are no longer bleeding. You will never be in the dark.” Those words shattered my worst fear and sliced through the conflict raging within me. I began to realize that I needed to take charge of my life again and my vision loss. My first hesitant step was to contact the State Agency for the Visually Impaired for information.

I learned that they actually gave classes to help people like me. I enrolled and found it to be of some help. However, I still felt unsure as to how I could manage my life.

My Retinologist had been urging me to go to a Vision Evaluator who he recommended and I had resisted. Now I made that appointment and was introduced to a whole new world of sight possibilities. From this valuable source I learned about specific devices that would enable me to see words on a screen as well as several devices to make every day chores simpler and faster to do. Finally the eye specialist sent out flyers about a sight seminar offered by the Macula Vision Research Foundation. Several sighted friends agreed to go with me to the Seminar. Here I learned that I was not alone with visual impairment. In fact there was an auditorium filled with people who were confronted with the same difficulties. There was one speaker who really spoke to my concerns, Mary Betty Roeder . She too had Macular Degeneration, lived alone, and described with such a positive attitude how she met the challenges of low vision. Suddenly, I realized my low vision was not going away and I too could manage the difficulties.

Now my goal was to enhance the vision I had and gave up the “poor me” syndrome. With help from others I reorganized my home, gave away things I no longer needed or could use and identified a place for each item that I kept. This action gave me quick access to all items I needed for daily use. I improved the lighting and used magnifiers as needed, including my computer.

Then I did what seemed a luxury, but because I like books I purchased a Book Reader even though it required delving into my savings. I have not been sorry as I have used it for reading many materials, not just books. It has become the work horse of my entire home.

These varied experiences helped me to realize how foolish I had been to ignore the visual help that was offered earlier. It was only when I realized that I could do almost everything I had done before Macular Degeneration visited, that my life became satisfying again even though I no longer had normal vision.

As I became aware of others, who had just been diagnosed with Macular Degeneration, I noted that many also seemed to be exhibiting the same attitudes and symptoms of denial that I had experienced. I truly understood this and realized that it was not unusual. To anyone the prospect of blindness is numbing of both the senses and reason. I kept hoping that I might find a way to convey to others the need to send
Denial to Egypt to join the real Nile and begin to create the satisfying life they had before. This goal, unlike wishful thinking, is possible. Perhaps this is a project for us all, because words coming from someone who experiences impaired vision and displays a positive attitude, has more influence and can inspire others to move from the negative to the positive way of life and thinking I CAN DO IT.

RECOMMENDED RESOURCE LIST

  1. State Agency for the Visually Impaired
  2. Low Vision Evaluator
  3. Macula Vision Research Foundation

ITEMS THAT HELPED


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