Coping

Macular Degeneration: Living Well with Macular Degeneration, A presentation at the SupportSight Seminar in Tucson, Az

By Betty Mathews, DrPH


February 23, 2008

Good morning. I am standing at this podium because I have lived with macular degeneration for more than five years. I live alone. Well, not exactly. I have a housemate whose name is Sasi. She is the toy poodle who owns our home and I work for her and I do mean I work for her.

In a couple of months, I will be eighty-nine and I am looking forward to the day when I can say I am ninety-something. That sounds really cool.

This morning I want to share with you some of my learning as a result of living with macular degeneration.

First, however, I wish to dispose of the label given our malady, macular degeneration. The adjective macular is innocent enough, but degeneration? It is a noun wrapped in negative connotations. Just pronouncing it reminds one of words like disposable, decay or degenerate. A more positive approach was taken by our sponsoring agency, the Macula Vision Research Foundation. At the top of their letterhead are the bold letters MD and the only reference to macular degeneration. So I too will refer to it as MD.

There is nothing pleasant about living with MD. You can’t hope it away. You can’t wish it away. It never gets better, but it does get easier.

MD has now reached epidemic proportions. Some of you may recently have been diagnoses. I want you to know that the first several months, at least for me, were the most difficult. As I look back, I can identify three emotional stresses that were pressing in on me all at the same time.

There was Grief, of course. I really grieved the loss of so precious a possession as my vision. But worse still, I could remember how my environment looked with 20/20 vision. I was continually comparing what I saw at the moment with what I saw before. Now this is a devastating exercise and a most unhealthy one. It made me want to crawl into a hole and just quit, to give up on life. I have been told by my doctor and others that some people do just give up. This saddens me deeply because today there are so many positive alternatives available. One has only to make the effort to reach them.

FEAR also embraced me. How bad will my sight become? What kind of future is there for me and how dark will it be? I will never forget when my retinologist was looking at film to determine if the hemorrhaging had ceased in either eye. He turned to me and said “Betty, you will never be in the dark!” The relief that spread over me at the moment is indescribable. It was only then that I realized how much fear I had been harboring.

WORRY was a third stress pressing in on me. Did this mean some form of institutional living? How could I ever manage to maintain my home? To manage the laundry dials or the cooking when I could not see when the bacon was done? I have a friend with MD, who was so concerned about this that she sent her husband to cooking school. Now, this man had been a Naval commander, had retired as a very successful lawyer. This tells us how capable he was as he went to cooking school. It was not until he had finished the final class that my friend discovered that her husband could not tell a head of lettuce from a head of cabbage! The lesson in this episode is that NO ONE CAN DO IT FOR YOU. YOU MUST LEARN TO DO IT FOR YOURSELF! Other than legally driving a car, you can do almost anything you wish, but you must learn to do it differently. Underline these words in your mind: I MUST LEARN TO DO IT DIFFERENTLY. This is the key to living successfully with MD.

Earlier, I said MD never gets better, but it does get easier. How much easier depends upon you and your willingness to give up old familiar habits for new ways to succeed at a task without the benefit of 20/20 vision. This is not easy to do. It requires commitment and persistence.

When the words “I must learn to do it differently” finally penetrated my mind, I began to think of resources that might help with such learning. A flyer from my doctor’s office was on my desk. It described this sigh seminar; only it was five years ago. I attended with several friends. There were professionals who spoke of the latest research and medical aspects of MD. I listened attentively although I doubt that I gave it adequate thought as my min was churning with “How am I going to manage?” Finally, an older woman named Mary Betty Roeder was introduced. She said she had MD, lived along, and had been concerned about how to manage. I became alert as she was speaking directly to my concerns. She described some of the things that had helped her. As I left this seminar, the thought racing in my mind was “if she can do it, I can do it too.”

I was encouraged and decided that afternoon to bake muffins. Now, anyone can make muffins from a box….not so! It was a disaster. I had muffin dough from one end of the kitchen to the other. I said aloud to myself “Wow, you need help!”

The next resource I found was the Southern Arizona Association for the Visually Impaired, called SAAVI for short. This is a national agency with local or regional chapters. I learned that they offered classes on independence living skills. I signed up immediately. The classes were really helpful. In addition, I was registered for Books on Tape and 411-telephone service that eliminated fumbling with a phonebook. This is a free service for the visually impaired and the blind. Also, as I am a veteran, they told me about the VA rehabilitation program for the visually impaired and the blind. I immediately placed myself on their waiting list. This is a live-in program for six to eight weeks depending upon one’s objectives. Thirty-five students are there at any one time and attend classes all day in which there is one teacher for each student. If you are a veteran, I urge you to look into this resource.

By the time I finished the SAAVI class, I was feeling very positive. I decided to follow through on the recommendation made by my retinologist to be evaluated by a visual specialist. As the doctor had already evaluated my eyes, I saw no reason for more evaluation and ignored his recommendation. Now that my attitude was positive, I decided that there must be more to this than I realized. So I made the appointment and a whole new world of visual possibilities was opened up to me.

It was not my eyes that were evaluated, but my vision. There is a difference. When the specialist was satisfied that she understood what I can see and how I see it, she brought to me devices to help me see more and better. I had the opportunity to try out these items so I could determine what helped the most. This is a magnificent service and in my case, the evaluator owns the local low vision store that provides a wide range of visual devices such as talking watches, talking clocks, talking scales, oral temperature reading, calendars large enough to see, lighted hand held magnifiers and many others. Many of the items are very reasonably priced.

There are also electronic and video devices that are expensive. This enables one to select a package that best meets his visual needs and fits within his budget. I urge you to make an appointment with a vision evaluator if you have not done so and to visit a low vision store as it helps one to discover just what is now available for use by those of us with visual impairment.

Finally, I want to wish you well on this journey. As you well know, it is a hard, steep climb. If you can stay with it, I know that you can and you will.

Thank you.

© by Betty Mathews, DrPH 2004