Dancing in the Dark Fields: The Teachings of Illness

From 1984 to 2015, Inquiring Mind was a semiannual print journal dedicated to the transmission of Buddhadharma to the West. The archive contains all thirty-one years of Inquiring Mind interview, essays, poetry, art and more–now hosted by the Sati Center for Buddhist Studies. Please consider a donation to help with the ongoing expenses to keep the site running.

First is knowing an illness to be an admonition to virtuous action.
Second is knowing an impediment to be the divine chosen deity.
Third is the patient’s awareness of intrinsic awareness.

—Ko-brag-pa Bsod-nams-rgyal-mtshan (from The Hermit of Go Cliffs, Cyrus Stearns, trans.)

I have a chronic, painful illness. Actually, to call the illness an “it” is a bit off the mark. It’s an event in the body, an event of the body. It’s my dancing partner, my teacher, my enemy, my friend, my curse, my blessing. It constantly surprises me, sometimes shocks me, and continues to shape my life like a river shapes the land.

Until I was 35, I was strong and capable. I walked the sagebrush hills of eastern Washington as a field botanist, I kayaked in the green waters of Puget Sound, I sat in meditation all night listening to the frogs. I loved dharma practice and long silent retreats. I was a hard worker and proud of my contributions to the natural world and my community. I was also, I see now, strikingly oblivious to my body—I didn’t need to pay attention: it was always reliable.

Then I contracted mononucleosis, a debilitating viral disease with a long recovery period. Illness, pain, and weakness were suddenly the stuff of my life. As the months passed, there were days or weeks when I thought I was recovering, but then the symptoms would return, fierce as ever. I never knew when the illness would hit or how long it would last. I say “knew,” but really it’s “know.” Gradually it began to dawn on me that this thing had moved in and taken up residence in the household. Every time I had a period of weeks without symptoms I would think, “All right, it’s gone. Hallelujah!” Then, when it struck again, I would be devastated.

Nine years later it’s still with me, coming and going in much the same form. After a few years, I discovered that what I had was actually several autoimmune diseases, perhaps triggered by the virus that caused the mononucleosis. At times I’m completely free of symptoms; at other times I lie in bed curled in a ball around the pain and feel nausea so persistent that food—and life—loses all savor and joy. Every plan is subject to the body’s unpredictability: tea with a friend, a hike in the mountains, a retreat with a favorite teacher—all may seem reasonable when first imagined, impossible when the time arrives. When the symptoms return, life becomes very small and narrow—the width of a bed, the space between one aching limb and another. And I feel grief. It’s hard to hurt, again; it’s hard to have to put one’s life on hold, again; it’s hard to be back in the place of illness.

This is the territory of the dark fields.

***

I’ve cried a lot of tears of self-pity in the last few years, and I wonder why self-pity is such a pejorative term. To feel pity for the person in pain—me—has been the first step toward really understanding that this is the human condition. I’m getting a taste of it a little sooner than most, a little later than some. I know a sweet little girl who developed a rare autoimmune illness just before her sixth birthday, and I watched her parents suffer as she struggled for breath. My friend Michael lies in his bed with Parkinson’s, not able to speak, his eyes locked on mine. Our tears mingle together, a big invisible river circling around the world, and through my tears of self-pity I join everyone who cries.

The most difficult teaching of illness has been unlearning my old deep habit of obliviousness to the body. If I’m feeling well and then begin to experience subtle signals—a little tiredness, a little weakness, a little pain—I may be able to stop the descent into illness. Ignoring those signals is a recipe for trouble. But oh, I’m such a slow student. Even though I know that the road of ignoring the body leads to pain, I forget, over and over again.

I find this just a little bit humiliating. I’ve been practicing mindfulness for more than twenty years. This is illness in its guise as fierce Rinzai Zen master: The student forgets her bowls. The teacher, out of compassion for her stupidity, whacks the student over the head. The student bows deeply, fails again the next day, gets whacked again. Maybe one day the student remembers her bowls. The next day, she forgets, and once again: whack! The word that comes to mind here is restraint. I’ve had to learn both to pay attention to the body and to allow its dictates to take precedence over my will, my pride or my excitement.

Ironically, in my early years of meditation practice, before I was ill, I learned with gratitude that I didn’t need to be subject to every whim of the body and mind. And yet, and yet: there is a fine line between nongratification of the body’s desires and suppressing the body’s needs. I’ve had to learn to respond with compassion to the requests of the body, to treat the body as a partner in the dance. This is most true when the lights go dark and we are once again whirling into the territory of pain and weakness. It’s easy to fight and resist, but I’ve learned the hard way how resistance increases the suffering. Instead there has to be a kind of surrender. The body is firmly in the lead, and my job is to follow it. That’s what this dancing partner has taught me.

I wouldn’t have said this about myself a few years ago, but I now recognize that pride is a big part of my personality. There’s nothing like a good illness to help you release a little excess pride. Proud of your dependability? Illness makes you undependable. Proud of your self-sufficiency? Illness forces you to ask for help. Proud of your career? Illness may very well undermine whatever career you have. We’re taught in Buddhism that the degree of suffering is directly related to the degree of holding on. Despite this teaching, most of us don’t let go of anything very easily. Illness, like a new puppy who chews anything and everything in sight, helps us get rid of things we thought we needed but really didn’t.

Another side of pride is shame. After becoming sick, I thought I couldn’t do meditation retreats because I was ashamed to ask for an easier schedule. When I could finally ask, and sit retreats again, it was like coming home after years of unnecessary exile.

Somehow, miraculously, every time I lose some part of my self-image, something fresh and beautiful comes my way. Because of this illness, I’ve gone from being a well-respected conservation botanist to a wanderer, retreat junkie, and sometime house and animal caretaker. I’m way less impressive, but there’s more room for grace. I have time for everything: for a friend in pain, for the light on the river, for my own wild mind shyly peering from the undergrowth.

A subtle part of the dance is knowing and remembering that although the body may be hurting, the heart and mind have a different kind of freedom. The most important thing I’ve learned in the last nine years is that even in the midst of physical suffering, there can be happiness, even joy.

In the last week I’ve been very sick, but I’ve been caring for a house (and a cat and two dogs) on the banks of the Chama River in northern New Mexico. When the early evening light illuminates the bare trunks of the cottonwoods across the river and catches the first faint spring blush of green in the branches, my heart soars with the beauty of it. I’ve found that happiness is often just right nearby, half-hidden, and part of the practice of illness is learning to recognize and rejoice in it: the forsythia in the window, the taste of persimmons, the joy of a good conversation. I’ve learned from long retreats that happiness is truly less about external circumstances as it is an inherent quality of the mind.

Happiness is a sort of resonance that I can tune in to if I quiet down and listen. If I’m blocked from that natural connection, I can consciously call up times of past happiness—my first Zen practice period at Tassajara, deep in the winter mountains, or the way it felt to gallop a white pony over the vast open moors of western Ireland. Mysteriously, the feeling of happiness in the body, sometimes from many years ago, arises again. It doesn’t have to be transcendent joy; simple, humble pleasure is an enormous gift when the body hurts, as Zen teacher Darlene Cohen teaches in her book on practicing with pain, Turning Suffering Inside Out.

***

Now I get to the tricky part: illness as blessing, as gift. It’s taken me a long time to see this face. I can remember snarling at someone, years ago, when they suggested that my illness might be a gift. Folks, a word of advice here: however much you may want to, refrain from making this suggestion to a sick person. They won’t thank you. Finding the gift of illness can only come from some genuine place far within. From without it feels like a way of minimizing the tremendous suffering of the person who is sick. I couldn’t call it a gift, not for years. It felt like a curse, actually, something entirely undeserved, unwarranted, and unnecessary. I have to say that it still feels like a curse some days, but there are gifts there too. And the greatest and hardest gift? The visceral, direct knowledge that life is not limitless, that tomorrow is completely unknown, and that, literally, there is no time to waste.

As long as I can remember I’ve felt a call to deep spiritual practice, even before I knew such a thing was possible. But for most of my adult life, there was always something that seemed more important, and that called to me for care—a husband and partner, animals, work, activism, household, land. I did my best to integrate times of retreat with an ordinary life, but I was like a tamed wild animal, always looking longingly toward the dark woods.

When death comes, we give up all our responsibilities, no matter how deep. Illness, too, can make it no longer possible to be “the responsible one.” Illness reminds us that we don’t have forever to take care of what most matters to us. I didn’t want to find myself on my deathbed still longing for those dark woods. Even my dreams began to tell me that it was time to let the spirit go where it needed to go. And so, years after first becoming ill, I turned the corner and asked for the impossible: a year’s leave from my work to do what I loved and was called to while I still could. I wandered, I did long retreats, I spent time with beloved friends, I lay on my back in the desert and watched the endless blue sky, and I stumbled into happiness that I would not have believed possible. I chose not to return to my work, and in these years of simplicity and wandering, my life has opened up like a flower and grace has come in a thousand ways like a cloud of butterflies on a summer’s morning.

So, illness is a dance, an admonition, a curse, a blessing, the divine chosen deity. I would not wish it on anyone: it’s a rough, cruel road. Nonetheless, here I am. How can I not bow down to it? It has humbled me and stripped me bare; it has given me my true life.

From the Spring 2009 issue of Inquiring Mind (Vol. 25, No. 2) Text © 2009 by Zenshin Florence Caplow and Inquiring Mind

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 Join Florence this fall in an online class on Dancing in the Dark Fields of Illness and Pain at the San Francisco Zen Center.