Demand to See (December 1996)
I first heard of Macular Degeneration six years ago when at age of 80 I was told by my ophthalmologist that I was developing that age related sight impairment. My introduction to it was not gentle. It was a routine eye check up. The Doctor simply said that he had good and bad news for me. I asked what the good news was. He told that I probably would not go completely blind. “Thanks” I said, “what is the bad news”? “You are going to have a hell of a time seeing from now on”, was the reply. When I asked what could be done about it the answer was “Nothing”. There was nothing that could be done with vitamins, nor could taking zinc would be a deterrent. Stronger lenses or different lenses could not help.
My understanding is that macular degeneration has to do with a part of the retina known as the macula where the nerve cells that are most sensitive to light and color are located. This is central vision. It is reasonable to assume that marvelous instrument that this eye is, through a long life time of an individual body, also suffers abuse of hard light, strain in low light, fatigue and it must share its abuses that other parts of the body suffer so that eyes do signal a material break down of the physical being.
With these factors one does not give into the fact that one part of the working equipment of the body gives way. I certainly do not fear old age. That is merely an expanse of years. Gray hair and some wrinkles, a few teeth other than my own, even some slowing down in my walk does not bother me much but to be limited in my capabilities for my work, that does annoy me to the extent that it is not acceptable.
It would be fortunate if the body could function beautifully through it’s time then all fail at once. In any case, though I am 87 years old I am very physically able and, as mentally alert as I ever could honestly claim to be. I am sure I am at the peak of my abilities as a painter. It has come through hard work and dedication and an unremitting determination. It is not my profession it is my way of life.
I was waiting in an eye specialists office and the waiting room was crowded. I sat next to a large, elderly black lady who I learned suffered the same problem I did. I felt the chair assembly on which we were sitting shake and I realized that the lady was silently sobbing. One or the other of us instinctively took the others hand. When her crying had subsided she said “I can’t even see my beautiful grandchildren that I love so much. I cried too for us both.
Eight or ten power binoculars are my constant companion. I observe with them to paint and when I am being driven in a car. I look continually. The glasses give me a clearer and somewhat dramatized view and I seem to return from travel with impressions and memories of things and places as clear in my mind as I have ever experienced. I suppose I seek harder and think more about seeing. Far less is taken for granted now. I value every view and every opportunity to see.
It is my hope that in telling the story of my experience with this unwelcome circumstance of macular degeneration I may in some way alert many others who may share this experience. It is simple awareness that there is life after macular degeneration that not all senses are set on hold because of this one limitation, important as it is.
I am writing long hand. I follow the rhythm of the letters. I cannot read back what I have written but I can write. I do need my wife’s help in interpreting and correcting what I write. For this reason I try not to be careless with the faculty I do have but strive as much as possible to make my script reasonable, nose to paper and shaping each letter and word as completely as possible.
Being a Pollyanna is not my style and it surely is not for other normally intelligent people. I do not like this situation of semi-blindness. It makes me angry as hell at times. Having been down the road of despair and knowing that leads nowhere, I have had to reconstruct my life in a body less fully equipped that I was gifted with and enjoyed in a careless way after a long life of taking for granted what now is realized as so precious. Partial sighted is not blindness. Some vision is better than none as blind people would tell us for sure.
I am an artist. A relatively well known painter. I am represented by paintings in the Metropolitan Museum in New York, in the Corcoran Museum in Washington, D.C. and in many prestigious public and private collections throughout the nation. My art career has been a typical one of long struggle and dedication, with the reward of slow but steady recognition. Only by aggressiveness does one survive to be an artist of repute. For an artist his work is not a job or a profession, not a business. It is his life, with habits of aggressiveness and a life spent working hard for his skills. Winning recognition, getting some financial stability. One does not give in to a circumstance that threatens his whole aim and purpose. To have my vision impaired was a disaster that was untenable.
No matter how reasonable and fair minded one may be, this personal disaster is the single most important one ever experienced. Early on, when my vision, though impaired, was far better than it is now, I went into complete depression. I felt that my life was over. Not to see with normal acuity was unbearable. I lost all perspective. Why see at all if not with full clarity. The hateful, blurred central vision was so distressing that I could see no future. No gentle suggestions by friends or my wife, that, with some vision I could adjust and find ways to live with the problem were accepted. They could say those things because they did not have the problem. I have loved books all my life. Could I sit and listen to tapes? Self sufficient all my life, giving up driving an automobile was humiliating. As were all things where I had to depend upon some one else. It embarrassed me to make demands upon my wife. I could put myself in her place and realize that she was being put on call all the time because of me. I have always detested the thought of demanding, requesting or literally needing any one else’s help. I have never developed the macho attitude that a wife serves a husband. I am not a great craftsman outside of my craft of painting, but I like to work with tools, make things that I need. I cut and put together shipping crates for my pictures, cut wood on my place and lay up stone. Manual tasks are satisfying to an artist. Dig a ditch. It is there to see. You have done something complete and it serves a purpose. Paint a picture, you worry about it. Is it good enough, is it right throughout. Does it serve any purpose. Probably not. Will it be accepted. Maybe. With the loss of vision I seemed to loose an anchor in reality. I suffered a deep and persisting sense of guilt. Why had I let this thing happen to me , to us?
I went into periods of depression that I could not shake for days. Of course others had suffered this, complete blindness, terrible crippling injuries. Why should I be the only one. That was reasonable, but this was me. That was the difference.
I had to work. An artist does not arrive at security in the same way as other people. We lived modestly. We owned a home, some property. We had two cars, Blue Cross. I sold my work at fair prices and I was a well known teacher working on a free lance basis, I was in demand for workshops and lectures. We travelled all over the world. But we did not have a secure tenure. I needed to earn. That was the difficulty and yes it was my salvation I am sure. I had to see. I demanded to see. I aggressively sought help in any direction that presented itself. And I did find help beyond what was suggested or that I received as guidance from the ophthalmologist. I was assured that this particular problem of vision was receiving more attention and research than any other current medical problem. I am not sure of that as yet. The situation, as I found it was that really not too much is known about the disease. Not many doctors in the field are doing much to find out about it. Tests and consultations do the same and seem to lack any definite efforts to understand and aid patients.
I was a typical novice. I had never heard of macular degeneration. Whatever I was told by the doctor had to be what I would rely upon. While there does seem to be no cure for macular degeneration I did find, through my own persistence, more than through any advice from my doctors that there were visual aids. I did benefit by stronger lenses for a while. As my case progressed many aids did cease to be of use to me. From time to time articles would appear in newspapers or on television that got my attention or the attention of friends who would alert me to them.
A doctor in San Francisco came up with a theory that interferon, a cancer drug, could have benefits for the ailment. This doctor referred me to a Southern California doctor who was doing some prescribing of this drug. It turned out that he could give me no assurance of good results and the treatment was such that I would be literally ill, like having the flu, for ten weeks. This regime combined with interference with my schedule of travel and teaching was too formidable for me to undertake with no promise of positive results.
I flew to Memphis to be examined by a doctor who was reported to be doing an operation – the literal scrapping of the retina. His conclusion was that my condition had progressed too far for the treatment to work. He assured me that my condition would stabilize with little more change.
But things did begin to change. Black spots in my vision and a few unnerving experiences in my driving. Yes! There was something going on here. There were large floating islands of dark. There were flashing lights, strange networks of lines. All straight lines were becoming distorted. There was a grid of lines, like a fish net. There were lavender and green blots floating continually before my eyes. It was confusing and disturbing. My wonderful experience of seeing was so much a part of me, yet one that had been taken for granted, was becoming, distorted, blurred and frightening.
When the Elvis program (Enhanced Launch Vehicle Imaging System) came about, a device developed by NASA, I was the first person in the Los Angeles area to try it. It is a marvelous device consisting of a helmet or mask which rests quite heavily on the head so seeing can be made through what is actually a television camera equipped with a zoom lens, which can reach out, pick up an image and have it brought close. After long awaiting this development I had to conclude that, for my purposes, seeing to paint, it could not be useful. In its present state of development it is limited to black and white. It is awkward to wear. The focusing and zooming is manipulated by a central box worn as a belt. The lateral range of vision is too narrow at close range to be workable for me. ELVIS is no toy. It costs $5,000 plus a training fee of about $1,400. If one has no other use for it than to see it would be a good investment. I must hope that perhaps further refinement in this direction will eventually lead to something practical for me. The best information I have had is that only three units have been purchased. This may mean that this project will be dropped because it will not be cost effective. I hope not because only through demand is progress made.
I, of course, have no technical knowledge that would give me any basis for my opinion, based only on a gut feeling, that is, that more could be done with biopic lenses to aid seeing in various individual cases. How much is being done in this direction? My present project is to try to learn of what is being done in other countries, Sweden, Switzerland, Holland, Germany and elsewhere in the area of visual aids.
There is a rumor or actual news now that a microchip can be imbedded in the retina turning the eye into a camera and that the principle will be tried on human beings within five years. Who knows? It makes life worth living to see what can happen.
During my time of deep depression I did question whether life was worth living without good vision. Seeing is an artist’s most important capability. An avid traveler and painter, what could life be without seeing.
I realize now that mine was not too unique an experience. To lose a faculty like seeing or hearing is like losing a dear one, seemingly an irreplaceable loss. Finally I had to turn things around. One cannot go on with a negative view. I was giving in, making myself miserable far beyond the inconvenience of partial vision. I was making my wife miserable because she was helpless to help me.
Yes, seeing was a trial but I could see, limited seeing to be sure, but I could see. I had to learn patience. I could use tools. I could listen to books on tape. The Braille Society and Recording for the Blind had vast libraries of books on history, literature, the arts, the Sciences and social matters, many read by actors who could make language come alive like plays. I could teach. My life time of experience was there to be used and drawn upon. I could go on location and paint viewing with binoculars. I could study landscapes, seascapes and details of the scene and I had my life time of painting and drawing experience to enable me to put things down with my eyes close to canvas or paper.
I had thought that I could not venture too much alone on streets by myself but I began making full use of my peripheral vision looking to the side or down or up gave me slightly sharper vision. So this became a habit. I became more alert in the way I walked, approached stairways and various ground surfaces.
My careless habits in my studio had to be cured. I began to keep track of where I put things. Of an impatient nature, I had to develop patience to make a simple measurement holding a tape or ruler and reading numbers with a magnifier that had to be strong enough for me to see.
There is a sheer pleasure in painting at times. The blending and relating of colors, seeing contrast of hues and values bring a canvas or paper to life. Now, for me, painting became all work. Only the end result, if it was successful, could give satisfaction. If my painting has grown stronger because of my limitations, some say it has, it is because I must see the basic design more clearly and make the execution of the picture more direct, making the power of the basic design supply the vitality rather than the niceties of technique. To conceive of a form then build it is more direct and meaningful than finding form through devices of technique. In short, I had spent my life going around the world looking at the sea, mountains, city streets and tropical forests looking and using my skills to set down what I saw. Gradually through this process I did develop theories and practices of design. Now I had to think and paint. I had to have the structure of a picture to hang my painting technique upon to guide me in the execution of a picture. My blindness to detail was enabling me to see the whole with more energy and strength.
As a teacher I believe I have become stronger too. I seem to have a better ability to lecture and criticize students work. I could see the whole design. I had the ability to read contrasts in hue and color. Not seeing individuals clearly when I lecture enabled me to look more directly at the group. My most important game in life had become a process of reorientation. Arriving at the assumption that I had always been partially blind I was now learning to adapt to it. I was learning to paint all over again. I was learning to see and to think in different ways. My world narrowed to my immediate surroundings, my immediate thoughts and communications.
Because I could not drive I was confined. I could not come and go independently as before. My wife had to plan our days more carefully to avoid waste of time and energy in coming and going.
I did more painting because of less activity in ways other than doing my work. I am not a Pollyanna. It is all very well to note and chalk up any benefits one can gain by even very difficult means. But it’s not funny McGee, regardless of how you slice it. It just comes down to doing the best you can with what you can, because that is better than nothing. Accommodating to a disability certainly affects both parties in a marriage. Having driven a million miles myself, I annoyed my wife and friends by back seat driving. The world of the automobile had become a menacing and dangerous one. Cars literally disappeared from my central vision. Speed was fearsome to me. I had to learn to keep my place and trust the pilots as I would in flying. I had to think not to call my wife for too many services. I could dial the telephone if I looked close. I memorized often called numbers. I tried to do more household chores. It was not easy, this adjustment. It has to go on continually. We have to work together. An artist has to carry on a business just like everyone else. My wife was used to this but more detail in the carrying on of our activities, painting, showing and selling paintings, scheduling work shop programs was all part of our work – a – day routine. Both my wife and I are individualistic. Adjustment is not easy but we do it.
When I visited the Anaheim unit of the Braille Society to arrange to have the service of books on tape, we were greeted by a gracious lady receptionist who outlined to us the various services that the Society offered including counseling on matters of domestic adjustment. We could realize that this is a common problem. The service is free and we were strongly advised to take advantage of it. Pat, my wife, told the lady that we were busy people with scarcely the time to be involved in counseling. She said she believed that we were handling it. Our hostess looked surprised and asked how we were doing that. My wife gazed at her steadily and said “I just don’t let him get away with anything.” The lady smiled after a time and said “maybe that is the secret.” The truth is that one with a major permanent loss cannot live with just sympathy and understanding. Yes, what has to be done as we both realized as we went along was that life has to go on in as normal and regular a way as possible, doing the same things, working, keeping alert to life and situations as one always has as nearly as possible.
My wife and I both travel together whenever possible. When I do travel alone I am well taken care of by airline personal. Most of my travel now is on the business of teaching though I do not entirely give up the life long practice of traveling to interesting and exotic places to paint. Deep and basic has been my need to explore my world near and far. I have lived and continue to live my adventure of mind and spirit through painting. More than ever, because I and my aggressive career places limitations on her, I encourage my wife to travel on her own. Vicariously, her travel is an extension of my belief that travel does enlarge ones vision, physically, mentally and spiritually, both by being abroad and returning home to find what is sought for.
I am associated with a local unit of the National organization “Recording for the Blind”. Being near a college town we have access to the talents of learned professors who donate time to the reading of text books making it possible for people with limited vision to carry on all kinds of studies and even earn degrees in various fields of study. Because I lecture on painting it has been assumed that I could talk on any other subject that I had deep interest in. So through “Recording for the Blind” I am now and then booked to talk to a group of senior citizens on the subject of Macular Degeneration since that is the age group definitely affected by this age related malady. It is of interest to me, in giving these talks that elderly people , like myself, are impressed and encouraged that a person like themselves and suffering the same problem does go on with his life, and that it is not necessary to the too easy assumption that “ I no longer see so well so there isn’t much that I can do or do about it.” There is much one can do about it. One can demand to see.
Where eyes fail, the spirit can takeover. After all, the eye is only the instrument for seeing. It is through the mind and spirit, fed and served by the senses, that one’s life is lived with understanding and reward.
A life of learning, or perfecting arts and skills of management and direction are too valuable to be wasted. An afflicted person young or old can take account of himself. “I can do”, “I can teach”, “I can work”, “I can help” someone or many. “I can write”, “I can share life”, “I am partially blind, I can help the completely blind”.
I am almost blind. I have a mind. I can help those who are not blind but do not see. It maybe naive to believe that everything and everyone is here for some purpose. But in the great mystery of life and nature there can be no conclusive answers through science or religion or profound philosophy. Only the individual can find his own answer to why he is here or what his purpose is. The intelligent person must take hold of his own destiny, determine what to do and do it with whatever he has to do it with. If your seeing is limited or threatened “Demand to See”, if not with good eyes then with bad eyes. Use touch, intuition, memory, imagination or invention. Use the seeing of others as much as possible without using others as a crutch.
The things I miss most by not seeing well are little kids. I had never realized that I thought much about little kids, but in restaurants, stores, on busses and planes I see and hear children but I cannot see pretty little curly headed blonds, little pig tailed black or oriental babies that are like china dolls, swaggering and prettily dressed little Latin boys and girls. I find I do miss them greatly. Then pretty girls – when a perky waitress takes my order I look up and I cannot see her face clearly. I feel cheated. Not being able to see my food is of course an annoyance too but when I get to the taste I have no regrets only mostly good experience of taste.
We hear a great deal about macular degeneration now more than in the past because people are living longer. Long enough to experience this common result of long use of so sensitive an instrument as the eye. More would probably be done about it if young people suffered it.
In our profit oriented society it might be worthwhile to trumpet the fact that eight people in every hundred do suffer macular degeneration to some degree or other. I could indicate a potential commercial market for effective bi-optic magnifying devices that are strong enough. It could be too that if there was even a small proportionate amount of the financing that is given to federal spending that could be devoted to development of better seeing and hearing devices even more might be accomplished in these areas.
I realize of course that there are trickle down benefits from most any serious government supported research and development but I am not really into the trickle down school of thought when it comes to the immediate, needed benefits for people. The lesson and philosophy that I gain from painting is that one has a design principle that is held to in a workman like way, not a vague concept to be realized through hope and trail and error.
To sum up – Macular degeneration is age related. Few people under seventy five suffer it. More people live to great age now and they are aggressive with a will to live. There will be more and more demand for ways to continue to live fully in spite of the natural deterioration of the faculties that make appreciation of life possible. Seeing is a major faculty among these and will require more and more aids and devices to make seeing a continuing possibility. But in its final analysis it is only the individual demand upon himself, upon related faculties and mental energy and viewing from within that one can really keep his vision.
Demand to See and you can see. Vision is a state of mind.
December 29, 1996
After thoughts to be edited into manuscript.
My understanding is that macular degeneration has to do with a part of the retina known as the macular where the nerve cells that are most sensitive to light and color are located. This is central vision. It is reasonable to assume that marvelous instrument that this eye is through a long life time of an individual body it also suffers abuse of hard light, strain in low light, fatigue and it must share its abuses that other parts of the body suffer so that eyes do signal its material break down of the physical being.
It would be fortunate if the body could function beautifully through it’s time then all fail at once. In any case, though I am 87 years old I am very physically able and, as mentally alert as I ever could honestly claim to be. I am sure I am at the peak of my abilities as a painter. What ever stature I have as an artist did not come to me through the gift of genius. It has come through hard work dedication and an unremitting determination. It is not my profession it is my way of life.
With these factors one does not give in to the fact that one part of the working equipment gives way. I certainly do not fear old age. That is merely an expanse of years. Gray hair and some wrinkles, a few teeth other than my own, even some slow down in my walk does not bother me much but to be limited in my capabilities for my work. That does annoy me to the extent that it is not acceptable.
I was waiting in a specialists office. The waiting room was quite crowded. I sat next to a large, elderly black woman who I learned suffered the same problem I did. I felt that chair assembly on which we were sitting, shake and I realized that the old lady was silently sobbing. One or the other of us instinctively took the others hand. When her crying had subsided she said “I can’t even see my beautiful grandchildren that I love so much. I cried too for us both.
Either or ten power binoculars are my constant companion. I observe with them to paint and when I am being driven in a car. I look continually. the glasses do give me a clearer and some what dramatized view and I seem to return from travel with impressions and memories of things and places as clear as my mind as I have ever experienced. I suppose I seek harder and think more about seeing. Far less is taken for granted now. I value every view and every opportunity to see.
It is my hope that in telling the story of my experience with this unwelcome circumstance of Macular Degeneration I may in some way alert some of the many, many others, who share the experience. It is simple awareness that there is life after macular degeneration that not all senses are set on hold because of this one limitation, important as it is.
Being a Pollyanna is not my style and it surely is not for other normally intelligent people. I do not like this situation of semi blindness. It makes me angry as hell at times. But having been down the road of despair with the thing and knowing that leads nowhere, I have had to reconstruct my life in a less complete a dwelling as a body fully equipped that I was gifted with an enjoyed in a careless way for a long life of looking for granted what now is realized as so precious. Partially sighted is not blindness. Some vision is better than none as blind people would tell us for sure.
I am writing long hand, I follow the rhythm of the letters. I cannot read back what I have written but I can write. I do need my wives help in interpreting and correcting what I write. For this reason I try not to be careless with what facility I do have but strive as much as possible to make my script reasonable nose to paper and shaping each letter and word as completely as I possibly can.
In my drawing and painting I now must be more definite and decisive. I must observe more thoughtfully and searchingly, make more definite effort to find the design elements inherent in the subject matter I am dealing with and give more thought to defining the particular concept that I derive from my observation.
I could be a suggestion to others who are not artists with seeing as a prime concern to study with some one in the business of graphic expression to learn ways of coordinating sight with thought to gain access to inner sight to a greater degree.
There are proven truths relative to copying with physical limitations that become tiresome. Platitudes when forced by its facts of daily existence, but these truths do assert themselves in time when they must be proven by personal experience. It is true one sees with his mind. The eyes are but instruments for sight. That is all very well but its validity must be learned. Beethoven wrote important music after he became totally deaf. That is true but he suffered greatly in doing it. Only his great mind and genius could accomplish it.
Do not assume that being jolly is much comfort to those of us who are in the constant exercise of all this perseverance we have to carry on. “It is not funny McGee”. But it is possible. And life is not fun it is fulfillment and even that is possible for those who will overcome the odds.
I am determined now to find any opportunity to talk on radio, television or to lecture to write as much as possible and harp on the subject of seeing aids. If millions of dollars can be spent on lenses, mirrors and devices for space travel then there should be money for things that people need. If we lived in a democracy, which we do in name only. the emphasis would be on the things that people need. Under the profit system it is not as easy to obtain millions as grants for visual aids for elderly people as it is to get them for space programs, the value of which is minimal as far as everyday needs are concerned. They serve the business of manufacturing contacts and as a show case for technology and prestigious feat of science. One would agree that there will be a trickle down of benefit to the common man, but that could be a question. And it would seem that the needs of now could be fulfilled as well.
Named Article 1 by Milford.
I had never heard of macular degeneration. I had a rude awakening of it. during a routine eye examination my ophthalmologist told me that he had good and bad news for me. I was startled. Obviously this remark must pertain to my eyes. I am a painter, seeing, observing as an artist has been my business all of my long life. I had always been keenly aware of my eyes, their condition and function in relation to my general health. Years ago I had stopped smoking primarily because it seemed to affect my eyes. Careful attention to my glasses and annual eye examinations had always been a prime concern with me. My eyes were my working tool and this man had good and bad news about them. “Well” I said, “What is the good news”. He said, “You will not go completely blind. “My God. What was this never go completely blind”. “What then is the bad news.” “ You are going to have a hell of a time seeing from now on” was his matter of fact answer. What is the problem. It is called macular degeneration. He described the disease in general terms. The deterioration of the tiny spot, the macula. It is part of the retina that has to do with central vision.Then there was his not very optimistic explanation that it was any age related condition primarily thought to be hereditary. that there were no sure explanation as to other contributing causes. Blue eyed people were perhaps more susceptible because there was no protection pigmentation in the eye. there was no conclusive proof that vitamins or any other medication could do much good. Laser treatment was supposed to be useful in cases where there was bleeding in the retina and that little could be done with stronger lenses or glasses. He did say too that a great deal of research was being done in this area.
It was a bleak outlook or would have been except for the fact that I was a busy artist painting, teaching, exhibiting and traveling. there was little time to dwell upon this problem. I could still drive. I seemed to have little problem then with my work.
But things did begin to change. Black spots in my vision and a few unnerving experiences in my driving. Yes! There was something going on here. there were large floating island of dark. There were flashing lights, strange net works of lines. All straight lines were becoming distorted. A grid of lines was like a fish net. there were lavender and green blots floating continually before my eyes. It was confusing, disturbing. My wonderful experience of seeing. So much a part of me yet one that had been taken for granted was becoming distorted, blurred frightening.
I was frightened. When I followed directions and underwent some laser treatment I could not stand the invasion upon my eyes. I will never be sure whether or not I could have profited by more such treatments. I suspect it and have never had commitment from any of my doctors that is a valuable treatment.
I made an aggressive search for help following every lead. I did by my own effort and discovery find some visual aids that the doctors never mentioned or alerted me to. It remains a mystery to me how the medical men, the ophthalmologist separate themselves so completely from the visual aids, homeopathic school and thought and procedures.