Coping

If I Had Known

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.

It is downright scary to be told that your vision will steadily decline and there are, as yet, no ways to prevent that outcome. You really do not understand what kind of a future that means, but contemplating the possibilities brews an emotional storm of questions that twist and swirl spasmodically as one wrestles with how to manage the many facets of everyday living.

I am nearly two years from that moment and if I had known then what I have learned since it would have eased the burden. As one travels this road the first and most important work is to grieve your loss. You are doing it anyway, but it is important to be fully aware of that normal process, to let the tears come as they need to, and then move on each time by doing something you really enjoy. This process, I believe, enables one to take control of life and begin planning how to prepare oneself for this future. One of the first things to do is to contact your State Association for the Visually Impaired to obtain their schedule of classes in your area and register for a class. In addition to the course, they will register you for local telephone information service, A Talking Books tape recorder and service and other helpful information.

When the diagnosis is first announced, most of us still have considerable macula vision. It does not seem so because to compare it we have only the normal or corrected vision that we have lived with all our lives. However, the macula vision that is still there can be used in ways now that will make a difference. We do not take advantage of this vision because one does not know, at this point, what will be useful later on. Valuable learning that I want to share is to use the vision you have to get your house in order.

It used to be that I could drop my pen on the desk or my keys on a counter and return to easily pick them up again. Now it is different! If I put an item on a table or counter I have lost it. Even if it is on the desk in front of me, to find it is pure accident. I find this to be a most exasperating and frustrating, experience and it is repetitive. To alleviate this problem, I had to assign a place for each thing I use and train myself to put things in the place established for them. Still I sometimes fail to put things where they belong and it is a costly error.

It is easier to reorganize everything while your macula vision is still in focus. The kitchen is a useful place to start. Your own common sense and logic must come into play as you simplify the kitchen. For someone else to reorganize it will not work because only you can decide what is to be stored where so you will know where to reach for it.

Your cooking gradually becomes streamlined and simpler. The task is to go through all the drawers and cupboards. Remove all those items you rarely use. Then put the remaining items in their places in such a way that you can put your hand on a utensil or dish without the benefit of seeing. You can see it but practice picking it up and returning it in place while looking elsewhere. This is really useful practice.

Later on when you open the refrigerator, you can see in but you cannot easily identify what is there because there is insufficient light. If you can designate a place for the milk, the butter and so on and begin developing the habit of keeping these things in their places, you will be able to reach for jam and find it in your hand.

The spice storage is another area needing attention. By whatever method you store spices, they will need to be in an order you can remember and kept that way. A hand held lighted magnifier will enable one to read labels when necessary, but don't buy one without first testing your vision with it.

My pantry was a nightmare. It was too big and therefore too full. I found myself over buying some items and running out of others because I could not see into the pantry shelves well enough to identify items I needed. Finally I became sufficiently exasperated to do something about it. By then I needed a sighted friend to help with the reorganization. We removed everything. She sorted and put like things together. Areas on the shelves were designated for different foods as canned fruits, cereal or whatever the content. For each different kind of food one label was printed two inches high with a black felt pen on a white card or heavy paper and placed around a can of peaches, for example and secured with a rubber band. I then placed other cans of peaches on hand behind the can with the label. Thus, when the row is empty and only the label remains on the shelf, I know that I am out of the item. It was important that I replaced the food items back on the shelves so I knew about where to find each type of food. As a result, I am no longer over or under stocking the pantry.

As you examine and simplify the order of each room, many items will need to be marked such as the dials on the stove, the laundry and other appliances as well as such things as your tape recorder, music system, specific computer keys and others you discover are difficult for you to identify. There are many ways to mark items. Some people prefer raised dots or puff paint that leaves a raised mark when dry. I have found sticky backed Velcro most versatile. It is available in fabric stores, comes in a strip with a sticky back, can be cut in various shapes and comes in colors. Both black and white Velcro provide increased contrast on most appliance dials. The Velcro provides tactile as well as contrast to aid ones identification.

In addition to getting your house in order, there are three fundamental elements underlying the management of everyday living with visual impairment. These are magnification, proper lighting, and contrast.

Magnification is crucial for sight as Macular Degeneration progresses. The closed circuit television is the work horse of magnification. It has a revolving desk top for reading and writing. What ever is on the desk top is projected on a television type screen at eye level and magnifies print from 2x to 16x to accommodate changing vision. Because of the moveable desk top, one can follow the line of reading or what is being written. It is wise to make such a purchase before you need it so you learn to use it well before you actually are dependant upon it. Manufacturers and prices vary, but all are expensive and guaranteed for the life of the purchaser.

Hand held lighted magnifiers are also useful for reading labels, bills and any small items. These are easily portable come in a desk size and a purse size. The latter is useful for reading restaurant menus and other small items like price tags when shopping. To put on make up, ladies require a magnified mirror. Some are lighted and I found with Macular Degeneration, the light shines in the eyes and is, therefore, visually distracting.

Contrast enhances vision. Potatoes on an equally white plate may as well not be there, but on a colored plate the potatoes are visible. Useful is a cutting board with one side white, the other side black. This board will contrast with almost any food to be cut or chopped. Even a colored napkin on the counter is helpful when filling a pill box or working on small hard to see tasks. Contrast and magnification together improve vision.

Increased Lighting is an absolute necessity. Vision requires not only more light, but light with greater intensity and in a device that focuses the light on the task at hand and not shining in the eyes. The best light that I have found for this purpose is the OTT-LITE. It is a counter lamp, eleven inches tall, four inches wide with a fold down handle for portability. It rotates on a five inch round base. The light flips up from the base parallel to the counter or desk with the light focused directly on the task. This lamp is essential over a cutting board or for any delicate task requiring vision. Also I find it useful to light my dinner plate because it concentrates light on the plate without annoying others. This enables me to see the food I am eating and that seems to enhance satisfaction. I am searching for a similar lamp that is battery powered, for travel and for use in restaurants.

As you struggle to see the small item or the fine print, remember to increase contrast if possible, focus the light on the task, and increase magnification. Together they are reinforcing and enable you to see better.

Helpful tools and devices mentioned in this article may be ordered from:

Desert Low Vision Services
1645 North Alvernon, Suite 2
Tucson, Arizona 85712
Phone: 520-8813439
FAX: 520-881-3482

© by Betty Mathews, DrPH 2004