Demons into Butterflies

Chronic Illness as Dharma Teacher By Hannah S. Wilder

As a child, I was always in motion. I carried this energy into adulthood; it ran my life like a demon. As an adult with attention deficit hyperactivity disorder (ADHD), I have brain chemistry that operates like two extremes on a dial: scattered/distractible or hyper-focused. As a child, I found respite in reading or lying beside a stream, watching tadpoles change into frogs. I found kindred souls in the streambed, and learned from them that transformation is natural.

The first fifty years of my life were a whirl of ceaseless activity. I rested only when I had pushed myself so far that I collapsed with a cold or flu, or when I found myself stuck in a subway tunnel or traffic. I always carried a book or writing implements, something to busy my mind and still my impatience. I completed several educational degrees, worked around the world, married, had a child, and divorced.

Then, I decided consciously to stop and raise my daughter in a quiet town on the Maine seacoast. I was on my own in raising my daughter and taking care of our home. I wanted very much to "slow down and live," but circumstances and habit pushed on. Thay tells the story of a man riding quickly on a horse. A bystander yells at him, "Where are you going?" and the man replies, "I don't know. Ask the horse!" I was like that man on the horse, propelled by my habit energies.

In the mid-eighties I began a recovery program from growing up in an alcoholic family. At a week - long residential program, a therapist had me portray my life, turning up the volume so that I could see how my busyness was a way of running from pain that only created more suffering. Each person in my group represented a demand in my life. I gave them each a line, and they all said their lines to me at once, so I could experience the overwhelming nature of how I lived: "Earn the money!" "Raise the child!" "Clean the house!" "Help me!" "Listen to me!" "Take care of yourself!" "Mow the lawn!" It was a vivid and clear picture, but still, I didn't stop. At home, I slid back into doing many things at the same time. My behavior was reinforced by others' admiration of my ability to accomplish so much.

Also in the mid-eighties, I first heard about Thich Nhat Hanh's teaching. The message that struck me was "do one thing at a time." I decided to try an experiment. Working in my home one weekend, I began one task. When a second task occurred to me, I wrote it down instead of starting it. I finished the first task, and then completed the rest of the list, one task at a time. I got just as many things done, but felt much more peaceful at the end of the day. I had taken the first step on the path of transformation to a more serene life. In 1993,1 received the Five Mindfulness Trainings, and in 1995,1 joined the Order of Interbeing. Shortly after that, a series of challenges turned my world upside down.

Within two years the man I had loved all my life and my brother both died in protracted and agonizing battles with cancer. My parents had died just a few years before. Overworking helped distract me from my losses, but it was too much. My health collapsed. I was in terrible pain and had disturbing symptoms, such as blurred vision and extreme fatigue. I was ready to "stop, calm, rest, and heal," but my family had all died and I still had to support myself.

I accepted an invitation to spend the summer writing in a friend's house on the coast of Somerset in England. There, I rested and wrote, but my health continued to be problematic. Each time I took a long walk, I got extremely tired and felt a lot of pain for several days. After I returned to the States, it gradually became clear that what I'd thought was an acute but curable and known condition was instead a chronic and mysterious one. I continued to have frequent, intense pain, fatigue, and cloudy mental functioning. Doctors shrugged. It looked hopeless. I felt shock and despair. Fortunately, there was a patient group that exchanged information and held a national conference. At length, I got an accurate diagnosis and began taking medication for symptomatic relief. But I was severely depleted, and had to leave my job, with no financial reserve.

How does a chronically-ill person earn a living? Building on my mental health counseling and teaching/mentoring background, I began training to be a personal and business coach and opened a private practice via phone and Internet. Many times I have taken classes by phone, lying in bed, too tired to move. Two or three kind friends gave me moral support. Things seemed to be calming down at last. Then, I received a gift in the form of a daylight robbery. My computer, with three months of data, was stolen. Following this, there was a rash of gang-related activity in which a number of women were tortured. I somehow managed to pack and move into a friend's home. The gift allowed me to see that I could make a move, when I had thought it was almost impossible.

Soon after, with the help of a Dharma sister who found me a place to live, I moved to Virginia. Just before the robbery I had started my first ghostwriting job, which, fortunately, was portable. I was safe and had become a professional writer, something I had always wanted. I could support myself while working on my coaching career. I breathed a sigh of relief. But in the winter I realized that the years of stress and trauma, and my chronic condition had brought my body close to a state of collapse. Soon I had two more diagnoses: chronic fatigue syndrome and fibromyalgia. I was no longer who I had been, at any level. Constant fatigue, head and body aches, memory loss and confusion, extreme sensitivity to noise, light, and an extreme awareness of other people's moods and energy were my new companions. By February 1999,1 could sit up to write only an hour a day.

The Dharma was in my face, so to speak, and the mindfulness teacher of pain was in my whole body. To get better and maintain the delicate balance necessary to function from day to day, I had to learn to practice twenty-four hours a day. Living the way of non-awareness, my body had been depleted, leaving little margin for forgetfulness. Dietary mistakes, weather changes, overworking, or stress may cause my symptoms to flare up. This means I must stay awake as much as possible, and take exquisite care not to let stress build up. I must notice each need—rest, food, fresh air, or quiet—and take immediate steps to meet it. Not responding invites a temporal flare-up, and also progression of the condition.

As a chronically-ill person, I sometimes reflect the quality of impermanence to those who are still healthy and strong. In a youth and perfection-oriented society, it can be challenging to find a comfortable place for aging and illness. I see people trying to separate themselves from my illness, to explain it in ways that exclude the possibility it could happen to them. My compassion for them comes from remembering when I was in their position, feeling frustrated at my inability to help another person in some active way.

Now more than ever, I understand that being present and listening deeply will help relieve suffering. This realization inspired me to begin asking people with chronic illness, "What attitudes and behaviors are supportive and healing for you? How can we educate our medical professionals, loved ones, friends, coworkers and neighbors so that they understand what we are experiencing and what we would like from them?" Perhaps compiling the answers in an article or short book would help others learn to relieve the suffering of those living with chronic conditions. Of course, the short answer is mindful behavior, compassion, and understanding.

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Medical people who have no treatment or explanation often feel unsure how to live with their uncertainty, and, out of their own "dis-ease," respond in ways that blame the patient. There are still poorly educated doctors who dismiss the condition or insult their patients. Some of those who take the condition seriously adopt a certainty that their specialty has the answer: if they are surgeons, it's a brain stem psychiatrists, it's depression and antidepressants will do the trick. Sometimes the variety of simplistic and radically different explanations and cures is overwhelming. Maybe there is a way to convey mindfulness to the health-care professionals as well, and let them know what it feels like on the receiving end of so much confusing and contradictory information, how it feels to be disbelieved and dismissed. So, added to living with the condition and earning a living is the challenge of education those who could be supportive.

In my other life, as I now call it, I loved to travel from snowy fields of the Northeast to high-desert mountains in the Southwest. Now I sit down in my lounge chair, lean back, put on my headphones, and open my laptop computer, traveling via the Internet or telephone to visit clients in California or Brazil, friends and Dharma brothers and sisters in Scotland or Scandinavia. I appreciate that the Internet was developed when I most needed it. Remaining in the comfort of home I can be in contact with the whole world! I speak to someone in Brazil or Australia, then go outside for a walk beside the stream to visit my friendly tadpoles.

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Aside from some persistent financial stress—selling a home to pay medical bills and living expenses often goes with chronic illness—and occasional discomfort, mine is a happy life. I have peace, beauty, and friendship, near and far. I am able to serve, by teaching tele-classes on mindfulness, by developing a program for mindful awareness at work, by coaching people in various walks of life, by leading two international groups of coaches by telephone, by mentoring a new aspirant to the Order of Interbeing, and by helping build our local Sangha. I am endlessly grateful for so many things.

It is essential to maintain the balance between accepting "what is" and continuing to hope and search for a possible cure, to strengthen myself. When I first moved to Virginia, I could not walk up my very steep driveway, so I drove down in my car, parked and walked across the rickety bridge to get the mail. Little by little, I walked farther each day, mindful of how much was just enough. By last summer, I was able to walk down and up my neighbor's driveway, swim a few laps around their pond, and then walk home up my hill. I have learned to replace grief at being an impaired person with gratitude for being able to walk and talk and look fairly "normal", and appreciation for the wonderful gifts around me. There are now times when I can dance!

I have improved faster than anyone else I know with this condition, and it's still with me. Applying my knowledge of holistic health and my research expertise on the Internet, I created a program for myself of nutritional supplements; a strict diet; a daily movement routine combining yoga, chi-gong, sa-long (in the Bon tradition), and mindful movements learned from Dharma teacher Thu Nguyen and Thay's tape. I meditate at least once a day sitting, and also do walking meditation. Practicing daily by myself, weekly with a Sangha, and sometimes traveling to Days of Mindfulness with Anh Huong  and Thu Nguyen sustain me. I am constantly reminded that being slow, being present, is all that is needed. I read the seventh of the Fourteen Mindfulness Trainings very often!

The tendency to wonder exactly what mistake brought me to this state, to rush around seeking an immediate cure, to worry about the future is still in my store consciousness. I do not water these seeds. I do not revisit my losses. And I remember Thay's words: "This is the shore of suffering, the shore of illbeing, despair, fear, and anger. I don't want to stay on this shore. I want to cross over to the other shore, the shore of well-being, forgiveness, peace, and compassion... When you practice to identify what is there and look deeply into the nature of what is there, you are practicing prajna paramita, and the insight you get will bring you to the other shore, the shore of liberation and well-being."

I am here, learning the gentle ways of butterflies as they light on flowers or settle at the edges of the stream looking for moisture on a hot summer day, sitting so still that the white-tailed deer, the wild turkeys, and the baby rabbits do not consider me alien. It is a peaceful, magical valley, an island of the self, a true home. And it goes where I go, through my constant practice.

Hannah S. Wilder, True Good Heart, practices with Cloud Floating Free Sangha in Charlottesville, Virginia. She can be reached by e-mail  at Hannah@Wiseheartcoach.com and would like to hear from others who are practicing with chronic conditions, teaching mindfulness at work, or those who are experts at resting.

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