Excerpt: Dancing in the Dark Fields - the teachings of illness

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 like life a river shapes the land.

Until I was thirty-five, 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 savour and joy. Every plan is subject to the body’s unpredictability; tea with a friend, a hike in the mountains, a retreat with a favourite 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.

Human condition

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.

Zenshin Florence Caplow

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