On Disability
“You've got talent. Really. When you grow up this is what you should do.”
I was in the fourth grade, coloring a drawing in art class. Denise was sitting at the desk next to me, admiring my work. I didn't know she was looking, and was startled by the words. I didn't see any talent, and I was confused by the comment, and groped to respond. Not knowing what to do with the information, I forgot the encounter.
When I was young, my relationships with other children were generally unfriendly, so the fact that I went to Denise's house to play with her on two occasions was more of a friendship than it might seem. But that was it, we didn't stay in touch. About three years after commenting on my possible talent, Denise began to get sick. Was it polio? The diagnosis was uncertain. Soon she was wearing braces to walk better.
After that was high school and college for both of us, and in different schools. While in high school I developed a serious interest in (guess what) art. So for someone growing up in Baltimore, it was an obvious choice to go to the top ranking college dedicated to training artists which happened to be right in town, The Maryland Institute, College of Art. From there I struggled to make ends meet as most young artists do after finishing their training.
Untitled, 1978, oil on canvas, 60” x 36”
It was around this time that my mother mentioned to me that she heard that Denise had MS. On another occasion she told me that she saw Denise and her mother at church, and asked about the MS diagnosis, and had it confirmed. Denise had MS.
In 1980, at the end of December, I felt terrible. It seemed like some kind of virus, and I really didn't want to spend money I didn't have on a doctor. I was working at a restaurant, making salads. My boss, a sweet, conscientious person, didn't like it that I was suffering.
“You're not taking the bus home from here today.” he said. “I'm going to drop you off at your doctor's office instead.”
“It's just a virus. I'm sure I'll be over it in a few days,” I answered.
“I'm not changing my mind. So you better call for an appointment,” was his final word.
The doctor said that I probably had a virus, and it would be over in a few days. Then he took a blood draw, and Iwas soon out in the drizzly weather waiting for a bus to go home, thinking that standing in this weather was the last thing my body needed. I had a sense while riding the bus that something bigger was happening, my life was changing, the world was shifting below my feet, and that this was much more than a cold.
Not wanting to create a self fulfilling prophecy I pushed the thought away. There are
some things you can't wish away, and I did not get better from this illness. Within weeks the exhaustion was so heavy that I could not climb the stairs after breakfast to go back to bed. I got used to living with pain.
From that first blood draw at the doctor's office the data collected was unusual, but nothing that gave any clue about my symptoms. You can't measure tiredness. You can't measure pain. So, doctors reasoned, I wasn't sick. This was the beginning of the years that I call, “honey, you need a vacation.”
“You know, with the right attitude, you would be surprised at what you can do.” “I'm sure that all you need a break, a vacation. Rest for a couple of weeks, and you'll be fine-- go back to work two weeks from now.” “You just need to have a positive attitude!” “I'm sure a psychiatrist/vitamin C/ brown rice, can help.” “You're just imagining things-- it can't be as bad as all that.” On the other end of the scale, an episode of miscommunication resulted in my believing for a week that my doctor told me that I had leukemia, and that I had four years to live.
Lots of people mean well when they say these things to people who are sick or disabled. It can be good advice, but it can turn evil when used in the wrong way. It can amount to blaming the victim. In the case of these doctors it was a weapon used to drive me away. I wouldn't go away. I demanded treatment. I had no choice in the matter.
I tried again and again to go back to work, only to find that I was unable to complete a single day. I fell asleep standing in the restaurant kitchen during the dinner rush. I was brokenhearted that I wasn't painting, and thought my life as an artist was over. I was sure that I would need all my strength in the future working at minimum wage jobs, and just surviving. When people, often with the best intentions, would insist that everything would be fine, the net effect was my isolation.
A friend made it possible to see Dr. Tumulty, at Johns Hopkins. Famous around the world for his gift at diagnosing confusing illnesses, he was glad to work with me. He was convinced that the blood work showed that something was going on, and he felt that I had some kind of problem with an autoimmune disorder.
While there are some tests that can show what's going on for many people, diseases of this type are notoriously hard to diagnose. It could be systemic lupus, rheumatoid arthritis, MS, scleroderma, Hashimoto's, or another disease. All of them have similar vague constellations of symptoms at first, and they are all diseases of the immune system. This is what happens when the immune system goes after healthy cells. Your body is at war with itself, and it is losing. Years later my diagnosis would be narrowed to rheumatoid arthritis.
So with Dr. Tumulty's help I began getting the drugs I needed to function, and slowly put my life back together. I started painting again, picking up on ideas as I had left them a couple of years before. It wasn't the same though. I was now doing work that was of a quality I had never been capable of. There was an intensity and joy in what I was doing. My mind had a new focus, and my work showed a new clarity.
This doesn't mean that I got better and lived happily ever after. It meant that I was gradually able to get and keep a job, and had some time and energy to make art. There were setbacks, and new waves of illness bringing me to my knees again. Each time I would work my way back to something that felt like normal life.
The Chariot, 1984, watercolor and gouache, 30” x 22”
Throughout this time I was producing abstract paintings, but they were changing. I have looked at my paintings created during this time and noticed that the illusions of deeper space characteristic of earlier work had gradually given way to an interest in depicting a shallower space. I now believe that this change came from my continual struggle with health issues, hemming me in, limiting the possibilities of hoped-for futures. The limits I fought were having their subtle effect, and it was showing up in my work along with a new intensity, and a giant step in the quality. Crisis, conflict, illness, disability, trauma, are all the stuff of life out of which you create your art. Your dreams are trimmed to bare essentials, and you come out of it with a focus that can't be reached in any other way. The whole thing ended up making me a better artist.
I had more periods of consuming illness, and at the end of one of them, Jean, my sister, offered to support me so I could use my energy on my painting. Her extreme generosity made it possible for me to find my way as an artist with a freedom that few have the opportunity to experience. After 20 years of working pretty much full time as
Dissolve, 1988, watercolor and gouache, 18” x 24”
The newsletters mentioned that Denise was really sick, but inspirational to visit. We called her from the party, and when the phone was passed to me, the first thing I heard was, “Tell me I was the first to see your talent. That time, when we were in class, and I saw what you were doing, I told you that you should be an artist. So I was the first, wasn't I?”
She was right. We made plans for me to visit. When I saw her, I found a person consumed with bitterness over her lot in life. She was also fiercely angry at her mother. When the doctors found out that Denise had MS, her mother insisted that Denise was not to be told. This left Denise in a permanent state of uncertainty, one that I know from my own experience is more grinding than a devastating diagnosis. My mother's question at church was the revelation Denise needed.
We had a nice visit, and I learned that there were several serious artists in her family, so her insight when we were children had a substantial source. At the end of the evening Denise gave me
Misty Light, 1989, oil on canvas, 40” x 36”
Weeks later I was hard at work on my house, doing some finish work after the contractors completed their part of the job, and heard Jean at the top of the basement stairs. My sister drove out to tell me that Denise's husband called to tell me that Denise was dead. Denise fought long and hard, but in the end there was grace. As my condition deteriorates as I get older, I find in my memories of Denise lessons of hope and grace that I will no doubt need. I will also bear in mind that we can face what we most fear and win a path to wisdom.
We include so many things under the mantle of “disability.” Some that we call disabled, such as the blind, find the term inappropriate, because all it means to them is that they draw their information from different sources. I tend to include those people who are disabled by believing stupid ideas, but most people don't think of that when they hear the term “disabled”. It can seem that blindness, deafness, loss of a limb should be in an altogether different category than life with a disease which will cause your body to deteriorate dramatically over time, often to an early death. However, if disability is looked at as an opportunity for insight from a different perspective, then all that Denise learned can be seen to have something in common with someone who is blind and can understand the shape of a room because of the way sound bounces from every surface.
A new concept of disability results from this approach, and I think a more positive one. Our experience is limited, whoever we are, and as we live any kind of life. Yet the universe we live in is so rich that every slice of it has an infinite fullness available to us. So if we look at disability as something that restricts our experience, it also focuses our experience in a way that makes deeper insight possible.
Evolution has given us bodies that are functional in ways that made it possible for our ancestors to survive. Evolution is governed by survival, so our senses were formed with survival as the controlling factor. That means we have developed sensory experience that gives us the information we need to avoid being killed. We don't have the senses we need to reach the 90% of reality that scientists say is out there but untouched by our ability to see or hear or study in any way.
From that standpoint, we don't have enough senses. We could develop more senses, evolve into creatures that see more and more of the parts we are missing now. If we evolve into creatures that can behold such marvels, it could make it harder to take in the simple pleasures we have now with our many limitations.
As I remember Denise, as I find simple tasks becoming difficult, exhaustion coming sooner, along with the normal experience of growing older, notions of evolution as progress, or disability as decline get turned upside down. My experience and appreciation of all around me is enhanced and amplified by the darkest times. The narrow slice of life each of us is given contains galaxies and eternities of meaning. We should remember this, and also remember the wonders outside our view.
On Disability
an artist I can't tell you how the work would be different if I did not have a chronic illness. It's like trying to say how my work would be different if I grew up in Bolivia. I can say that my adventures with my health have been a big part of my experience of life, and it is that kind of experience that shapes the nature of your gift.
In the late 1990's some of the guys in my class in elementary school decided to organize a class reunion. They started sending out newsletters about how they wanted to have this reunion, and they didn't want the women to do it (because they always end up doing the work for this stuff) and they wanted to contact everybody. Out of the 70 or so people, they found all but 6, and more than half of those contacted made their way to the party.
pictures of herself when she was younger, saying, “I want you to remember that I used to be beautiful.”
That made me sad. As I looked at the photographs, and then back at my friend, I preferred the older face. OK she gained a little weight, some hair was gray, but there was nothing damaged or disfigured. Her face had gained a look of wisdom, and it was lovely. I'm sure most portrait painters would have preferred the older face; if Annie Leibovitz were standing next to me, I think she would have agreed.
Maybe that's because artists are looking for more than a match to popular concepts of beauty-- artists are the ones who help us understand what beauty is. I wanted Denise to become utterly convinced that I was right about this, but I knew better and thanked her for the photos.
What followed was my regular visits to Denise's house. We would look at her art collection, I would bring my paintings. I would bring my ferrets, and let them scamper on her bed. She loved it. We would order lunch at a local deli, and I would go pick it up. I would bring plans of the house I was building in West Virginia, and she would want to know all of the details.
I didn't hear from her for a few months, and wondered why. So I called, and went over for another visit. She had been very sick, on life support for 17 days. She was thankful to be alive, and deeply happy. I told her that I was relieved to find that she was able to stop this disease from taking her happiness away. She told me that she learned a lot while she was so sick. Denise finally found the grace she needed.
Text © 2008 Roberta Morgan, all rights reserved
Roberta Morgan and her sister, Jean, have an online business which is called Assistive Devices Key. This online store provides daily living aids to enhance independant living for those who are seniors, disabled or injured. You can visit the site at http://www.assistivedeviceskey.com.