Macular Degeneration: Unseen Positive Possibilities for Us?
You may have read or heard one or more of my writings on the human side of Macular Degeneration. This paper is somewhat different for I am going to tell you a true story. After hearing the story I want you to answer the question posed in the title. About two and a half years ago I attended my first Sight Seminar held in Tucson, Arizona and sponsored by the Macula Vision Research Foundation with local Retinologists. My helper and I volunteered when asked by the lady with the red umbrella. A year later we attended a second Sight Seminar and a planning luncheon with the red umbrella lady, who is also the executive director of the Foundation. After the meeting she was inquiring about the best way to get to the airport. We offered to take her as it was on our way to Green Valley. On the drive she discovered that I had retired from a University and asked me to write an article for the Foundation newsletter. I indicated that I had not written anything since retirement and doubted that I could do justice to such an article. Several weeks later she phoned and said that she wanted an article on how it really was after such a diagnosis. I agreed to try and asked, "Can I tell it like it really is without holding back?" She was positive and very encouraging.
I wrote the article. She was so complementary that I just kept writing more. Along the way a strange thing began to happen. As I would try to fall asleep at night a rather delightful and very positive story began churning in my mind. It was so intense that I had to go to the computer and type to free my mind of the activity in hopes I could sleep. Never in my life have I written fiction or in the first person, yet here I was typing an imaginary story. The story seemed to have a life of its own that was demanding to be written. It seemed totally unrelated to any of my life experience.
After writing a section, my mind would clear and I would say to myself, I guess that is finished as I have no idea where to take it from here.. It would not be long before a sleepless night sent me back to the keyboard. This little story is totally unrelated to Macular Degeneration. But is it really so unrelated? I asked myself. No, I am convinced this new and heretofore unknown skill would never have occurred except for my having Macular Degeneration and writing papers in the first person for the Foundation. As I thought about this I realized that each of us has hidden talents of some kind that we may not have ever developed, and perhaps not even identified as yet. Macular Degeneration forces us slowly to give up, almost one by one, many of the pleasures that sight provided. Our task now is to find ways to fill the void that impaired vision creates. Some people with impaired vision have told me that they spend five and six hours a day listening to books on tape. Such audio books are a much needed resource, but spending one's waking hours in such activity is not unlike sitting before the television all day. It becomes a way of "killing time" as well as one's creativity. You might say to me, "I have always been task oriented. I have no creative ability." That is not true. Thinking through how to accomplish a task, solve a problem or how to do something better requires creativity. Coping with Macular Degeneration forces us to find ways to do something without depending on the sight we were so accustomed to. The problem may lie in not thinking of it as creative. If we assume that every person is creative in some way, we will be close to the truth. Just try new activities that you have always wished you had time for or wished you could do. If your dream was to play the piano, now is the time to start. If I can teach my fingers the computer keyboard, you can teach yours the piano keyboard. Maybe your dream was painting and if so, start perhaps by painting flower pots and find out if it feels good. Perhaps you already have started. With time on your hands, thanks to Macular Degeneration, go for your dream whatever it is. If you think you lack the skill required, try it anyway or you will never know. I have learned that most things we see as stopping us can be circumvented in some way.
I am going to share with you the first chapter of the novel I thought I could never have written had Lea Bramnick, our Red Umbrella Lady, not insisted on an article for the Foundation newsletter. Please take heart and try doing something you have never done before.
The Lonely Little Waif
A small boy, who appeared to be less than five years, sat alone in the Airport. It felt like a long time since his mother and her friend had wandered off. He was worried that she might not return. Suddenly he saw her coming toward him. Sitting nearby Mrs. James Livingston lll, a young and very wealthy widow of two years had been observing the quiet little boy. She watched him come to life as someone obviously important approached him. His pleasure was short lived, however. Lisa Livingston saw the woman walk toward the elevator with a male companion. Lisa watched disappointment cloud the boys eyes with what seemed like a touch of hatred.
What a beautiful child, Lisa thought. His jet black curly hair and expressive blue eyes set him apart. He must feel the cold with such skimpy clothes. She moved closer to him and asked his name. He said "Nathan, what is yours?" Then he said, "I am going to Denver to visit my father". "That is wonderful" responded Lisa," I am going to Denver too." Nathan's eyes brightened as he exclaimed "Oh, I hope we can sit together, it is fun to talk with you." Lisa nodded with a smile: "I think we can arrange that". The flight was smooth and ended much too soon for Nathan, who was having a truly new experience. Lisa was talking to him as an equal and listening to his every word. It was such a wonderful feeling.
As they entered the Denver Airport, Nathan's father was not there. After a forty minute wait Lisa suggested to Nathan that they go to his father's house if that was all right with him. She called her Chauffeur on her cell phone to pick up her bags and meet them at the curb. When the long limousine arrived, Nathan, who had never seen such a car, was unbelieving as they walked to the door. He whispered to Lisa, "This is like a mansion, isn't it!" Lisa smiled and explained that it was a special car for special people like him. She asked him to tell the driver, Charles, the address for his father's house.
In about thirty minutes they arrived in a somewhat rundown neighborhood and then were at the address Nathan had given. One could see that the door was slightly ajar. Lisa asked Charles to accompany them into the house. It was filled with empty whiskey bottles, broken dishes, and filth everywhere. Suddenly, a man appeared behind them, introduced himself as a neighbor and informed them that Nathan's father had been arrested a week ago. Lisa turned to Nathan and said, "I would like it if you would come home with me and tomorrow we will find your father. Is that agreeable?" It was, for Nathan did not want to be left in this place and he was delighted to go with Lisa whom he liked more and more. Another half hour passed when the limousine turned into a long wooded drive. Suddenly before Nathan's eyes appeared what looked like a castle. "'Is this where you live?" He asked in wonderment. "Yes Nathan, right now this is where we live." Lisa rang for tea. As they climbed to the floor above Nathan exclaimed, "I have never seen stairs so wide and that curve." Lisa took Nathan to his room and they both washed their hands and she sent the package with his pajamas to the maid to be washed and dried as quickly as possible. They then descended to the library where tea was waiting. For Nathan there was hot chocolate and the tiniest sandwiches he had ever seen. It was such good fun to be eating in mid afternoon while talking with Lisa. When they had finished they returned to Nathan's room and Lisa drew his bath. She scrubbed his back, helped him wash his hair and wrapped him in such a big towel that he was covered from head to toe. As if on cue, the newly washed pajamas arrived for Nathan. Lisa helped him climb into the king size bed and told him to nap a little if he could. She would be back in a short while and they would have dinner together. Nathan beamed as he settled into the satin sheets. For a while he lay there wondering if he might be dreaming all that was happening to him this day and happily dozed off.
After bathing and dressing casually, Lisa was back. The butler Henri was setting up the table. He had the fire lighted in the fireplace. It felt warm and pleasant. Lisa found a big shirt that would serve as a robe for Nathan and they sat down to dinner together. Nathan was happier than he could ever remember. He had never had a conversation like this at dinner. He still wondered how all this could be happening except in a dream. After dessert of Chocolate cake and ice cream, Lisa suggested Nathan pile the pillows on the bed so he could sit up, while she told him a "Just So" story. He seemed surprised that she could tell stories too. Catching the query on his face she explained that when she was a little girl her favorite book was The Just So Stories. She loved them so much she memorized all of them.
In the middle of the second story Nathan was fast asleep. She covered him, gathered his clothes, left a light burning and gently closed the door. She sent his clothes to the laundry to be ready in the morning for him as he had no others. Then she called Charles to ask him to make a list of police stations in the city in which people were booked and indicated they would visit each until the boy's father was located.
Lisa was sitting at breakfast when the maid entered with Nathan, who was bright and shining in his clean clothes. She helped him fill his plate from the side board and motioned for him to sit next to her. He had never before seen silver dishes like the ones on the side board. His attention was caught by flowers and candles in the middle of the table. Finally he turned to sit down only to be distracted again by all the dancing lights in the Chandelier hanging over the table. To him it looked like hundreds of beautiful drops of hanging water. The sun shining through the east wall of glass created beautiful colors that danced about the room. Lisa noticed his interest and explained how all those colors were created by the sun and chandelier coming together. Then she encouraged him to eat his breakfast as they had much work to do today. She told him that they would visit police stations this morning in hopes of finding his father. Nathan was not sure whether to be happy about this or not.
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