Pain is a box, a space that shrinks and grows again during the day, a cage I carry with me, a tiger's cage with bars made of hesitation, effort, fear, exhaustion, a cage that keeps me holding on as I go down the stairs one at a time, that keeps me awake at night, twisting and turning to find a place to wedge my arms, hands, knees, in such a way that they will stop complaining and let me sleep.
Pain is a threat that makes me walk carefully. The dog banging my knuckles, toes knocked against the bedside, a too-outstretched arm, tiny mishaps in an ordinary day are sudden insights of pain. The thought of a slip, a stumble, a fall is unbearable. Every day, the dog and I make our way along the rocks by the beach: he flashing, fast, proud; me carefully behind. I will not fall, I think. I will not, cannot fall. I don't.
Pain is a new territory, a new country, a new culture with new customs. Now that I am privileged to enter here, I look for disabled bathrooms, sigh at hard chairs, shrink from any kind of journey. I discover that in getting on and off buses or airplanes, that long bottom step is a killer.
I count my other privileges: lying down in the long afternoons without guilt at work undone, windows or floors unwashed, wood uncarried, books unwritten. I count these: walking through the blazing autumn, trailing far behind the impatient dog, each step an achievement, each path a negotiation, coming home to peace, a long cup of tea, the chair piled with cushions, an evening full of silence.
Like any transition to a new culture, there has been a period of shock, of learning, of grief at the loss of what was once familiar, of reluctance to assimilate the new. People come at me using words once unfamiliar that now resonate with a power over my life: chronic fatigue, rheumatoid arthritis, immune deficiency, food sensitivities. These people mean well, but I sense they also wish to put me into another cage, one that fits, one that is comfortable, filled with the right kind of food and medication. But so far, none of them have fit properly. People shake their heads and sigh in dismissal.
Doctors also shake their heads. None of the tests are positive. My wonderful friend Carolyn, who is a doctor and alternative health practitioner, says "rheumatoid arthritis." She gives me books and articles and new pills to try. I read that rheumatoid arthritis causes exhaustion and depression as well as painful inflammation of muscles and joints. It's considered incurable. It's considered progressive. I shake my own head. None of this information feels like it applies to me. I don't feel like a person who is ill. I feel like a person in pain, acute pain that will soon go away, if only I can rest enough. But it doesn't, even when I try the pills and diets that people prescribe.
Today I have lunch with a new friend, someone with a bad back. He says he has been forced to learn all about pain management. I am immediately fascinated by the phrase and want to know what he means. From what he says, it seems mostly to have to do with lying down and taking lots of aspirin and not overdoing it on those days, in those moments, when the pain recedes and the sun comes out and life passes, for the closest it gets these days, to what used to be called normal.
He sits across the table. He holds his shoulders rigid. His lips thin and narrow when he moves. I know that face. I feel its mirror on my own. Some days the muscles in my face twitch. For a long while, when things were even more difficult than what passes now for usual, my face kept twitching into a kind of rictus. When I allowed it, followed it, looked in the mirror, it was like a snarl.
But I am a writer and this is a new place, so I try to follow my snarl to its conclusion, follow the new customs I am learning that are dictated by my body, which has turned foreign and tyrannical but stubbornly follows some wayward and vicious course of its own. I am taking notes. I am a new dweller here, passing through, I tell myself, on my way back home.
But as my familiar world recedes and shrinks and I move into this new place, people still come at me expecting the same person they have always known. They can't see that I have moved on and am living, for an unknown while, in a shadow country parallel to theirs. They peer in, see only the shadows shifting, offer, not unkindly, a litany of stories, remedies, miracles, suggestions, anecdotes, hopefulness. I go to lunch with others who are full of friendly advice and speculation. But advice and speculation blow away like air. They don't help me dress or clean my dreadful floor. I listen and thank them and pass on, silently cursing my own cynicism and what seems like everyone else's penchant for believing in miracle cures. Expensive miracle cures. If I believed, would they work? Is it only my lack of discipline, lack of faith, stubborn and stupid unwillingness to subject myself to regimes of fasting, cleansing, enemas, organic everything, exotic herbs that keep me from instant joy? I live in the country, grow and eat organic food, drink clean water that pours off the mountain. Can't I just endure this?
I struggle to find a stance that serves both me and my friends, try to find an easy place where they are comfortable and where I feel neither whiny, self-pitying nor pitiable. At the same time, I struggle to find ways to say who I am now, to explain this new dimension in my life that takes my time and attention away from them and my life. I try to explain, but I am using a foreign language.
What they don't see is that not only have I moved into a new place, but I myself have been invaded. Pain is a kind of uninvited guest who has moved in and now refuses to leave, the rude kind who uses all the towels in the bathroom, eats all the food, makes life a hell of interruptions and never apologizes. But like anything else, one adapts, one gets used to it. I sigh and invite my guest yet again to dinner, knowing he'll stay anyway, that the length of his stay is neither up to me nor him, but to something more mysterious: my body, something called healing, a miracle.
Pain is something to which I learn to adjust. I allow for it, know what path I can walk, what steps I can take, what chairs I can sit in, what postures are almost comfortable. Some days, pain no longer feels just like itself, has a color, a texture, is distant enough to not make demands. It can persuade me what not to do, or we can make bargains. I always have the choice of pushing my way through the pain, whining busybody that it is, past it to get on with whatever it is I want and need to do. We negotiate. We live together, not on very good terms, but some uneasy, always-shifting middle ground.
The outer edges of this continuum are unknown. On one end is a mystery called death and on the other an equal mystery called health. My body has always served me well, now it cries out for rest, sleep, peace, stillness. I move through my world these days as an anomaly, a world I created when my body was mine to command, a farmer's world, a world of animals, gardens, hiking, friends, family, community, a busy world, full of demands needing time, energy, strength. At the moment, those are scarce, and my world shrinks.
I talk to pain, ask it who it is, what it wants, where it comes from, ask it for meaning. But pain is mute. People talk gently or uneasily to me about grief, pain, repression, about meditation and forgiveness. But pain is a puzzle not so easily teased into revelation. Like a Zen koan, it eludes understanding, focuses my attention on the moment at hand, on the next movement, the next chore, the next bits of time to be gotten through.
This focus is also a gift. With swollen and painful joints, no move is taken for granted. With a limited amount of energy, I can only manage a few relationships, a few projects. I am forced to concentrate.
I quietly divorce some of the more difficult elements of my large and noisy extended family. For now, I give up trying to save the world or even understand it. I'm happy enough to get through each day with enough accomplished to feel at ease when I lie down again each night. This may not look like much: the floor swept, dishes washed, the fire kept, a few letters and pages typed and stored, phone calls to friends. Enough.
Walking home through the wintry dusk, on my way to lie down and appease the noisy litany of aches and complaints from various body parts, I am thinking of ambition. For I am, as all writers are and must be, ambitious, for myself and my work. And this ambition, which has been a spur and an itch and a thorn and a variety of nasty little devils, has somehow receded and now takes a more balanced, dimly lit place in a corner somewhere.
This is new, but then, so much is. Astonished, I look at the sky. Well, I think, humbled at last, but no, not quite humble, but far more willing to accept with grace the gifts of each ordinary moment, to fumble my way through this life with less worry, less trepidation, less haggling with imaginary futures. I have wished for peace but never thought it would come as such a peculiar gift. How equally astonishing that since my body has developed such a variety of physical complaints, the black hole of emotional depression has gone.
I worry, of course, about my future and my writing and my tiny income. Occasionally I am acutely irritable and impatient. I am also aware of the lurking but unexamined fear that there might be no Miracle, no healing, no transformation, that I might not again ride horses or take a bath or go hiking, go for long, leisurely swims, or even worse, be able to prune my 60-year-old apple trees ever again.
I thought such activities were necessary to my existence. Now, I am surprised to see they are peripheral things, additions to my life that I once chose, but if necessary, can live without. I don't yet know what else I can live without. I don't want to know. But I know now the core of my life is lived on the inside, hidden, continues even when all such peripherals are stripped. The core of my life is not what I do, it is the harsh, white, twisted flame that burns and burns, gets me up each morning, makes me eat, stay alive. The core of my life is merciless, demands I keep living with as much effort and energy and skill as I can manage.
I accept all such gifts. I can't afford to be choosy. I accept my own humility, my hobbling walk, my painful lurching up from chairs, my grimace at others also bent and moving slowly through the supermarket, hanging onto the shopping cart. I accept them, perhaps not so much with grace, but at least with humor. If pain has made for me a cage, its walls are porous, full of light and color. And like all travelers, I know more than I knew. I have seen new facets of myself, and I have seen and learned some few small things about another country previously hidden and unknown to me. Now, I see and understand that it was all around me all the time.
Pain's largest gift to me, in return for its unscheduled stay, is that I have this lens to look through, this focus on each moment, this time when time itself is slowed, deliberate and sometimes, blessedly, gently empty of anything to do or think or be, when pain and I lie down together in the winters dusk, with a book, a cup of tea, some aspirin, and long hours alone together and at relative peace.
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