DR. BRETT WEBER
People With MS and the Courage to Give
Chapter 17: The Healing Spirit of Faith, Creativity and Companionship
THE WEEK BEFORE COMPLETING my Ph.D. in neuroscience at Temple University, I was diagnosed with primary progressive multiple sclerosis (MS). I have partial paralysis in my left leg, have difficulty standing, and must use a wheelchair. As a scientist, I had focused on how the brain processes visual information. I also studied nerve regeneration. Since my diagnosis, I have devoted myself to understanding this disease through scientific research, but also through my art.
Of course MS can be devastating to those who are afflicted with it and to their families, but like any major life-changing event chronic illness can also bring new values, new appreciations, and new colors and textures into one’s life. It is my hope that through my art I can encourage broader research on MS.
I have always admired Leonardo da Vinci. He experimented in both art and science and experienced his share of both success and failure. I admire that attitude to be unafraid, to pursue truth, to have faith in your observations, and to continue onward no matter what obstacles present themselves. In that way, I have always hoped to emulate Leonardo. Not only by doing both art and science, but by pursuing each without fear in an effort to do some good.
There is a sharp distinction between art and science, and studying a disease through art is not the same as studying it through science. My art is about my own emotional, intellectual, and spiritual journey, and within that context MS plays a significant role. When I paint, I feel as though I am on a journey of discovery. I allow myself to think about problems in a different way. As I navigate my own course through an expression of color and texture, I hear the words of great people and imagine the journeys they have taken.
My paintings tell me about my journeys. They are a record of where I have been. Dissimilar as we may be, both artists and scientists are creatures of observation. What some overlook, we take joy in discovering. Things perhaps not clearly understood, but things we believe to be real and open to interpretation. We are in constant struggle to describe what we observe. And even after we convince ourselves and others that we have seen some truth and made sense of it, there is always some doubt. The artist and scientist both recognize how imperfect our human capacity is as we search for moments of understanding in a sea of complexity.
Physicians claim that about one half of all people who have MS experience a serious depression during their illness. I have, of course, at times felt depressed about my situation. Interestingly though, I have never felt compelled to go on any form of antidepressant medication. I believe that I am blessed with a naturally happy disposition but that I have also maximized my natural coping skills through thinking productive positive. For example, how people affect me emotionally has become an important consideration. I simply refuse to be surrounded by negative people—and this includes certain individuals within the medical community. I choose my physicians and my friends very carefully. They have a powerful impact on the way we feel about ourselves—rousing courage and hope, or fear and depression.
A wide range of physical symptoms can come and go over time with MS. The
disease causes damage within the central nervous system along nerve pathways affecting movement, speech, vision, hearing, and bladder and bowel control. What is not commonly recognized is that the disease can also directly interfere with a person’s ability to think clearly. Damage within the brain can create changes that affect problem solving, attention, learning, and memory. I believe that just as physical therapy can help people with MS maintain as much physical ability as possible, mental therapies that encourage problem solving, attention, learning, and memory skills may help people with MS maintain as much cognitive ability as possible. Strategies such as art therapy and other positive, challenging, creative outlets may help improve or maintain partially impaired cognitive pathways within the brain and may enhance an individual’s self-worth and natural coping skills against depression and perhaps fatigue.
A diagnosis of MS implies a lifelong condition, progressive physical disability, emotional conflict, and lasting adjustments. It’s not uncommon to experience a sense of disbelief, anger, depression, guilt, fear, and a driving desire to regain control over one’s life. All of these negative feelings contribute to an intense and active stress. Stress is a normal reaction to MS and should be expected. But instead of allowing our stress to cripple us further, it can be extremely helpful to find positive stress-relieving escapes from the disease. My escape is my art. My artwork is about bringing unity to myself. It is about listening to instead of shouting at reality. It is also about triggering my mind’s unconscious thought processes toward healing—by paying attention to and making sense of the normally silent, repressed, and oftentimes distant elements within myself.
Several years ago a friend of mine referred to a painting that I had just finished as being “either a complete abstraction or a landscape, but either way poetry.” That friend convinced me to exhibit my artwork professionally, if for no other reason than to raise public support and awareness for MS and my rare form of the disease.
My paintings are abstractions. I do not intend to paint representational images. From time to time they may appear to be something recognizable, but I never intend to paint anything representational. I do name my paintings (other artists often leave their abstract art untitled), however, and I believe that in searching for a name I usually come to recognize what my paintings represent.
The entire process of creating and then naming my paintings provides me with a very satisfying physical, emotional, intellectual, and spiritual release. What’s more, because I approach my artwork with no expectations of good or bad, right or wrong, correct or incorrect, much as a young child first approaches art, I experience very little of the stress and anxiety that is often associated with the creative process. What will people think of my creative work? In view of my illness, questions that used to cause me anxiety (my Ph.D. defense, for example), have become much less important. I create artwork for my own enjoyment now, and to my own personal satisfaction.
For instance, I have come to understand the idea behind my painting Rainforest as the act of global deforestation—the cutting, burning, and irretrievable extinction of our planet’s most valuable resource: biological diversity. We are losing at an unprecedented pace plant, insect, and animal species that might hold the cures for diseases like MS.
As a scientist who has a disease with no cure, this issue is especially close to me. I see the deforestation of the world’s rainforests (and loss of biological diversity) as the single most important issue of our time, and I feel symbolically linked to global deforestation and the burning rainforests with every passing day through the demyelination of nerve cells that is continuing unabated within my own body—someone should listen.
Since September 11, 2001, and my debut as an artist in New York City that December, I have come to see myself as a hostage and my MS as a terrorist—a foreign aggressor within my body whose intent is to inflict great suffering on me
and my loved ones through random, ongoing, unstoppable acts of unprovoked violence. But this terrorist has no other cause, and it is non-negotiable.
Recently my dear aunt Shirley sent me a novel called Bel Canto. In it Ann Patchett writes, “What begins as a panicked, life-threatening scenario slowly evolves into something quite different, a moment of great beauty, as terrorists and hostages forge unexpected bonds and people from different continents become compatriots. Friendship, compassion, and a chance for great love lead the characters to forget the real danger that has been set in motion . . . and cannot be stopped.”
Patchett’s description captures the emotional sentiment that I have experienced toward my enemy (MS) as well as my friends. Serving people who are also held hostage by MS (or some other illness) and allowing them to help me has gradually come from my appreciation that although my encounter with my enemy has certainly not been positive, it has also not been entirely negative either. The courage to form bonds in creative expression, spirituality, and/or simply companionship is seeing the love, courage, and beauty that ultimately come to pass during a devastating event—such as the devastation that touched the world on September 11, 2001, and the Columbia shuttle disaster on February 1, 2003.
There is a healing spirit that arises within people during times of disaster, when strangers who may momentarily panic, flee, or fall into despair grow closer as companions, find their common faith, and act with creative boldness. So it has been with my illness, friends, and family.
This holiday season a friend of mine was asked by her seven-year-old disabled son Aron, “Mom, tell me the truth, why am I in a wheelchair? Why am I the one who has to be in a chair and not walk?” She explained to him “I told you the truth, you have cerebral palsy (CP) and that part of your body was the most affected.” He nodded, “I know that part, but tell me the truth. Why is it me?”
When she asked what I would say to him, hinting for some creative boldness, I told her I did not know, but shared with her the words that this thirty-two year-old man repeats to himself everyday: I am a soldier and I am on a mission. My mission is to not be afraid, to not be angry. I have those orders from my superior officers, my faith and close companions, who tell me regularly that I have been given all that I need. War is tough! The mission does not seem possible at times, but I am a soldier, and I will not let my commander and my fellow soldiers down who fight alongside of me.
What we all must remember daily is that we are not alone, and that we have won many battles together. We can expect to win the war. No doubt! No fear.
It is true that some people live easier lives than we do. And some live more difficult lives. We must be soldiers. Not everyone is a soldier. And not everyone sees the enemy. But we see the enemy, we have our orders, and we must not be afraid.
I have never actually been a soldier, but I understand the mission of fighting for a cause, not one that you have chosen but one that has chosen you.
At our former home near Philadelphia we lived close to a pavilion where one afternoon a group of veterans who had fought in various wars were enjoying some music and a violent summertime storm after placing some 58,168 small American flags side by side in a soccer field, commemorating each person who died in the Vietnam War (and a smaller circle of flowers remembering the victims of September 11, 2001).
I only intruded because I was on my scooter without an umbrella in a downpour. When I arrived under the pavilion, soaking wet, with my German shepherd service dog, Sophia, I was immediately offered a cigarette and a towel. I dried off and shared some banter about the lightning flashes and my dog. Jimi Hendrix music was blaring, and a wickedly powerful thunderbolt came down
before it dawned on me that everyone under the pavilion thought I was just another veteran. They talked to me as though I had known them my entire life. It was a good feeling, and I was relieved that no one asked me how I came to be in a scooter or what war I served in. At the time I felt that my answer of MS would have disappointed them, but now I think otherwise. These guys understood war and irony, but those were topics for some other time. This day was about companionship and planting flags in the ground during a marvelous summer storm.
Leonardo da Vinci once referred to art as being “the queen of all sciences”— a queen who offers not simply an alternative approach to obtaining knowledge but also a way of sharing that knowledge with the world. Although MS has affected my hands to some degree, I choose to do abstract art not because of my reduced dexterity but because abstraction is the only style of art that can be executed without planned intent, and is therefore a way for me to dream.
Through my art I wish to issue this warning: As fellow passengers on planet Earth, we must recognize our common natural enemy as disease. Never has there been an enemy who has touched more people, and there will never be an enemy who will take more lives. Since the dawn of human civilization we have waged war against this enemy through our shamans, witchdoctors, and now scientists. Our scientists must be our frontline soldiers, and they must wage a different kind of war for us in this new millennium. Not a war against neighbors who may define art, science, or God as being something different from our own immediate and limited understanding. No. Let us make peace with our brothers and sisters and fight the one Holy War on Earth—the war against human illness.
For additional information visit www.brokenartgallery.com
