Coping

The Macular Degeneration Journey After Two Years

By Betty Mathews, DrPH

Macular Degeneration is the pits! Few could disagree. For most of us it is the struggle of our lifetime to come to terms with this condition. It was when the retinologist said, "Betty, you will never be in the dark," that my worst fears were calmed. I could then begin to accept the fact that the visual impairment was going to stay with me. I found I no longer needed to grieve my loss. My energy was spent on using the vision that I still had to better organize my home, simplify my cooking, select the recipes I might need and type them with large print. I also reorganized my closet, disposed of things I no longer wore and put like things together. These preparations were helpful, but to live alone successfully I could not sit back and just let vision loss determine how my life was to be led. I needed to be very proactive, seek out better coping skills and learn what was available that would assist me. At this point I sought the aid of a Low Vision Therapist. She evaluated my vision and worked with me using an array of magnification devices and many everyday tools that were large enough to see with ease such as a kitchen timer with an eight inch diameter, a calculator with one inch square buttons, and even a talking watch with a pleasant voice. As I used a computer, she demonstrated the Zoom Text computer program that allows one to magnify the screen and even have documents read back to the user.

I now knew what I needed immediately, what was available for future needs and where to find them. I felt in control of my life for the first time since that shocking diagnosis. I was suddenly aware of a change in my self-confidence and began to increase my social activities, dine out more frequently and travel comfortably.

This is not to imply that there are no problems. There are plenty of them. I do not expect them to disappear, but with some effort most of them can be managed. Others can be tolerated with special effort. When I shop for groceries I can identify nothing on the shelves although I know from past experience where items are located. Now, not only do I have to be taken to the store, but I need a friend to select from the shelves the items I desire. If I could see the items myself, I might purchase different things or things new to me. I have found one solution. Many stores have limited help these days. When I can find a clerk, I have told her that I can't see and could she show me where a specific item can be found. This not only results in being guided to the right row and shelf, but she then describes all the variations of that product category. This is very helpful. One cannot afford to avoid admitting blindness. Even more difficult is trying to shop for clothes when you cannot see them at all well, and cannot tell the extent to which an item fits or looks well if tried on. Not all friends are helpful in this regard. I think what I miss the most about shopping is being able to see the merchandise and selecting an item rather than asking for an item, not knowing what alternatives are available.

Also I find social interaction more difficult for me as I cannot see facial expressions, especially the expression of eyes and it is not easy to grasp gestures. This occurs despite the use of peripheral vision that is helpful but it's field of vision is limited and is not always too clear or precise.

We are normally unaware of the extent we use non-verbal communication until it is no longer there. The non-verbal gives emphasis to the verbal. Notice when the tone of voice tells you how glad a person is to see you. If the non-verbal message is only visually available, then it is not communicated to you. Sometimes this message differs from the verbal message you receive. I find this loss to be a great disadvantage. Even though it is difficult and often impossible to compensate for such problems, I have come to accept them as my reality. It seems to me it is only in this way one can find a modicum of peace.

I seem to have difficulty with habits from before that hang on. I keep volunteering for projects that require sight, quite forgetting that I cannot see well enough to complete them. For example, a friend, who was moving to my community, needed to decide what to bring to her new smaller home. I offered to enlarge the floor plan drawing and cut the furniture to scale so she could determine what would fit in the new house and where. The enlargement I could do and as she sent the measurements I could convert them to scale as that was a mental activity. When it came to drawing these small measurements on paper and cutting them out, I was a total failure without better vision. Magnification was useless. Without a sighted person's help this project would never be completed.

My greatest frustration is the fact that I can lose an item while sitting at my desk. The item, of course, is somewhere on the desk or floor; even so, it is lost to me. If what I lose is found, it is pure accident. This is a serious problem especially when the lost item is a check book or a credit card. One day while counting and organizing cash in my wallet, my housekeeper found paper money on the floor of my study and brought it to me. I was in shock for it meant I had dropped it without knowing and had no way of seeing it on the floor. After that I carried only five and one dollar bills in my wallet. For the same reason, I converted all clear glassware to plastic as a glass dropped on a tile floor breaks and is impossible to see. As careful I try to be, such problems will always exist. At least I keep learning what the problems are and when I need help. This enables me still to feel that I am in charge of my life. I have not mentioned transportation, as everyone who has ever driven a car knows, how devastating that is. There is nothing else to be said on that subject.

In the early weeks of visual impairment, I became aware that my friends absolutely could not grasp what it is like without adequate vision. After two years on this journey, I find they still cannot grasp what it is like, nor can they anticipate your need without being asked to help you. As I try to remember how it was for me as a sighted person, I have concluded that without direct experience, no one can fully grasp its nature although the low vision therapist came ever so close.

A friend of the last two years also has Macular Degeneration. We lunch together periodically and frequently talk by telephone. Our common impairment enables us to talk of our frustrations, laugh together over the foibles and accidents we have and share coping ideas. Each of us has expressed how much better we feel after our discussions. I hope every person with impaired vision finds such a friend or uses support groups as it provides an outlet for feelings and a sharing of what is working to compensate our loss. This is important for ones mental health and a valuable learning tool. After saying all this, I still find Macular Degeneration to be the pits. However, there are many ways to cope with this loss and to move on with a degree of normalcy and good feeling again.

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.

© by Betty Mathews, DrPH 2004