Unit 3 Section 2Exercise 5Making sense of illness: Coping with pain
Clinical correlate 3: Low back pain
This exercise consists of two very different readings. Both, though, are about coping with extreme distress brought on by illness. You may be assigned one or the other essay, or you may be asked to compare the two essays.
The clinical correlate provides information and study questions on low back pain. Because the patient mentions her diagnosis of fibromyalgia, you might also wish to refer to clinical correlate 7.
Mary Swander, The Fifth Chair
On an early February Saturday morning, the temperature thirty-five degrees below zero, a howling wind driving snow against my windowpanes, I woke up unable to move. Pain shot down my neck, through every vertebra in my back, and out my tailbone. pain pulsated through my shoulders, elbow, and hips. My knees, swollen twice their size, throbbed with an excruciating rhythm of their own, and the nerves running down my claves to my big toes felt like piano wires tightening tauter and tauter. I tried to raise my legs, but couldn’t. I tried to twist my torso, but couldn’t. I’d been ill and alone before but had always been able to hop, stagger, or crawl to the bathroom. This was different. Overnight, I’d become a Kafkaesque cockroach, stuck on my back, incapable of righting myself.
The previous day I had felt a stabbing pain in my right knee. But what was new? I’ve walked around in pain since age fifteen when I had suffered a severe neck injury in an automobile accident. I had tried various forms of physical therapy with various results. When the injury finally manifested itself as fibromyalgia, a rheumatoid condition, the doctors simply advised: Learn to live with it. A Midwesterner to the core, I masked my daily discomfort, bullying my way through the days, trying to focus on other things, trying not to complain. Thirteen years before, I’d also made a comeback from a near-death experience from Environmental Illness and had lived a very restricted, controlled, and isolated life in response to that disease. So what was a little knee pain?
There I was at six a.m. unable to turn my head, wiggle my toes, or even reach up and scratch my nose. I was living in rural Iowa, fifteen miles from town, in the heart of the heart of the country, on the coldest night of the coldest month of the year, of the decade, of my lifetime. I lay in the darkness and tried to think, the pitch of the pain rising higher and higher. Fortunately, the phone was right beside my bed and I could bend my elbow just enough to get it up to my ear.
My nearest neighbors worked nights and wouldn’t be home until around eight. Then they went straight to bed, turned on their answering machine, and slept through any disturbance. I would try to catch them just before they slept, asking them to feed my animals and help me get to the bathroom. After that, I had no plans. All I wanted to do was pee, and somehow then I thought everything would be fine. I waited, moaning to the beat of the pain zinging down my leg, and listened for the sound of their car, the slam of their door.
“Sure, sure. I’ll feed the critter and Donna’ll be right over to help you,” my neighbor Stu said.
Quickly, Donna appeared, lifting me off my futon, pulling down my pajama bottoms and plopping me on the toilet. Soon she maneuvered me into my wing-backed chair, clicked on the radio, put the phone in my hand, and after having been up all night, went back to her house to sleep.
I sat in the chair. One hour passed, then another, the pain becoming more and more intense, the piano wires underscoring a whole symphony orchestra. On the radio, the Click and Clack Brothers gave tips on how to fix the electrical system of a used car, then Michael Feldman asked, “Whad’ya know?” and the audience replied, “Not much. And you?”
I considered who to call next. I kept thinking that I didn’t want to impose on anyone. With the extreme cold, most cars were dead or needed a jump start. Furnaces were going out, pipes freezing. People had their own troubles. For some reason, it didn’t occur to me to try and call an ambulance. Then, on right after another, I received a series of phone calls from friends.
“Are you warm enough?” James asked.
“Yes, but I can’t move. I have pain in every joint.”
“Weird,” he said, then went into a long description of how he’d been awake all night listening to the strange popping noises that his house was making, how he had a very busy day ahead without time for anything.
“How are you?” Victoria asked.
“Horrible,” I said. “I can’t move.”
“Bizzare,” she said, then talked about her taxes.
I called my literary assistant. We were supposed to meet in town later that morning. “Could you possibly come out here?” I asked. “I have hideous pain in my joints and can’t move.”
“Oh, yes. I know how that is,” she said. “I get this awful pain in my elbow…”
I called my gynecologist, who had just put me on hormones for menopause. I though perhaps these pills had caused a stroke. She said this wasn’t her specialty, that she was on her way out of town and would leave me her number.
“I don’t have a pad or pencil and can’t get up out of this chair to get them.” I told her to call back and leave the number on my answering machine. Then I hesitated on the phone.
“What do you want me to do,” she asked, besides come out there and take care of you?”
Years before, through death and divorce, my family of origin had disintegrated. Both my parents were only children, so I had no aunts, uncles, or cousins. I had no spouse, no children of my own. I had my friends and neighbors, thank God, and good ones, too, but for whatever reason – my stoicism, their denial or inability to comprehend the severity of the situation – I could not communicate with them enough to connect during this moment of crisis.
I was Chekhov’s taxi driver in his story “Grief.” The driver’s son dies one morning, then the father spends the rest of the day feebly attempting to tell one passenger, then another, of his agony. Each interrupts him, completely missing the import of his words. All day, he is unable to unburden his sorrow until he returns his horse to its stall at night and, brushing it down, tells the animal his whole, long story.
That Saturday morning my horse was in its stall in the barn wrapped in a blanket, and I was inside the house in my pajamas in the wing-backed chair. The pain had moved from the string section to the kettledrums and cymbals. I could no longer tolerate sitting up. My head wanted to flop to either side, and when it did, the Click and Clack brothers’ electrical system shorted out, sending a convulsing shock down my arms. My hands braced on the arms of the chair, I tried to rock myself forward. Nothing budged.
I tried to push up with my feet, but the mere pressure of my toe against my sock sent tears streaming down my face. Finally I let my whole body go limp, slack. Inch by inch, I slithered down out of the chair and spilled onto the floor. I lay there for half an hour, splayed across the hardwood, coldness pressing against my cheek. Then, with my arms stiff at my sides, with a stunted scissor kick, I propelled my body headfirst across the floor to my futon. With the last little ounce of brute force I had, I hoisted my head and torso onto the cushion. My legs had given out. They dangled down onto the floor as if on some muddy river bottom.
Eventually help arrived, and a series of trips to the emergency room followed, where I received a diagnosis of “gout,” then was sent home to my own devices. (Over the course of the next four months, the diagnosis progressed from gout, to an exacerbation of my fibromyalgia, to rheumatoid arthritis or lupus. A full ten months later, I finally was found to have a ruptured cervical disc and myelitis, a viral infection of the spinal cord akin to polio.) Home from the ER, I was bedbound and forced again to turn to my neighbors and friends. This time I had to make my needs clear to them, to accept their refusals as well as their help.
Naked, I sat in Chair #2, this one in the shower stall. I stared at my friends Kelly and Katrina, and could not meet their eyes. My right leg stuck out into the room, unbending, foot cold and exposed.
Kelly and Katrina glanced away.
Well, I thought. You could sit here shivering in the chair, or you could get on with it.
Slowly, our heads lifted, eye met.
Kelly and Katrina rolled up their sleeves and hot water sprayed down over my head and trickled off my back. The women reached in, and at my direction, lathered up my head with shampoo. Water cascaded off their arms and dampened their shoes. Shampoo slithered down my face and my friends tried to keep the suds out of my eyes. They soaped my body and with a washcloth made gentle but clear swipes under my arms, across my back, over my breasts, and between my legs. They rinsed me down and, turning off the water, patted me dry with towels.
So in they came, the neighbors and friends. Thirty-nine different people. Three or four a day for three weeks. From my closest chums to my students and colleagues. Even my electrician signed up for a shift. Every four or five hours, a new pair of hands opened my kitchen drawers, rummaging for utensils. They opened my mail, searching for checks. They opened my closet, hunting for clean clothes. Some steady, some hesitant, some downright shaky, they opened my robe and lifted my neck to change hot packs.
Whish, boom. When they first opened the door, each one of these men and women – old and new friends alike – entered wide-eyed, willing, but unaccustomed to their new caretaker roles. Shedding their coats and hats, they stepped into my bedroom and no longer were just acquaintances and pals. Suddenly they were my nurses, my guardians. I was their patient, their child.
“Welcome to the funhouse,” I quipped, trying to ease my nervousness.
To ease theirs, the women chopped onions and carrots and stirred big pots of stew. They sat beside my bed and read me stories. They helped me hobble to the bathroom and turned away their faces until it was time to wipe. Whish, boom. Most of the men were back out the door as soon as they cam in, feeding the cats and dog, running after groceries, renting a walker, a commode. Inside, they sat at the kitchen table and sharpened my knives.
“Hey, Mom,” I whispered to my friend Sarah, who slept beside me on the sofa one morning. Seven-thirty a.m., I’d been awake since six, needing to urinate. Ashamed of my problem, I hadn’t wanted to wake Sarah. I lay there in the darkness, the tick of the clock growing louder and louder, until I finally murmured, “Can you get me up?”
Sarah roused herself and stood beside my bed, swallowing, hard.
Tentatively, she put one hand under my neck and wrapped the other around my waist, as I had coached her. Then, cradling me in her arms, she pulled my body upward and we abandoned ourselves to the primitive intimacy of the moment. Awkward though we were in our newfound tie, we were kin.
A few minutes later, she sat me down at the kitchen table. Immobile, I was like a child in a high chair, a voyeur at my own feeding. I directed her to the freezer compartment of the refrigerator in search of a bag of cherries. She pawed through cold packs and hunks of frozen meat until she found the fruit, which she began warming in a pan on the stove. My stomach growling, mouth watering, I watched her slowly stir the fruit, steam rising from the pan. Sarah tied a napkin around my chin. I opened my mouth wide.
“Coming in for a landing,” she said, buzzing the spoon through the air and dishing up a bright red cherry.
The fruit lodge on my tongue, the juice warm and sweet, pooling my cheeks, trickling down my throat. Sarah reloaded the spoon and I chewed again and again, one cherry at a time, my teeth breaking through each membrane, sinking down into the flesh. We had both given in.
Shortly, Sarah left for work. I thanked her, wished her a pleasant day, and held back my tears until I heard her car pull out of my drive. Then I let myself cry. I realized I forgot to ask her to put me back in bed and I was stuck in Chair #3 until early afternoon, when someone else was due to arrive. Now I was the baby in her crib, left with a babysitter, bawling her head off when her mother steps out the door. Except there was no babysitter. Now, in the midst of the parade of these genuine caregivers, I’d never felt more alone.
Solitude has always been an important factor in my life. As a child, I was constantly thankful that I had two older brothers who had to share a room and that I was privileged enough to have my own. I would enter my space, an enclosed sleeping porch, shut the door, and play by myself for hours, the wind blowing the elm trees baack and forth past my windows, the breeze cooling and slightly raising the hairs at the nape of my neck. Or I would curl up with a book in my bed and read while the squabbles and oversights of the rest of the family brewed all around me.
I devoured books like The Secret Garden, Treasure Island, Jane Eyre, and Oliver Twist’s orphanage made the household tensions around me seem manageable. I was the child who abhorred the thought of going away to summer camp, even if we could afford it. Camp seemed like the ultimate orphanage, lacking any kind of privacy. Although I loved sports and the outdoors, the thought of sharing a cabin with ten or twelve other girls terrified me. That was way too much noise and togetherness.
At the same time, I sincerely like people, liked to laugh, joke, and play team games with them. But at the end of the day, I craved alone time, to gather my thoughts, to be quiet and feel safe emotionally. I was extremely shy. People, although fascinating and fun, were scary, saying and doing unpredictable things that I found difficult to comprehend. I needed the time and space to regroup and reorganize before launching off on another morning.
In my adult life, I have mostly lived alone, again happy to have my own space and time at the end of the day. Self-sufficient, I’ve always supported myself financially and grown almost all of my own food. Self-entertaining, I have existed without a TV or VCR. From this single lifestyle has come a paradoxical connection to a large number of people as well as an unblocked passionate outpouring of artistic work.
For several winters in a row, I have been in the habit of getting up early every morning, pulling on my boots, hat and down coat, and taking a walk down to the local Amish General Store. On the way back I usually pass Gracie, an Amish girl of about fifteen who clerks behind the counter and stocks the shelves full of flannel work gloves and wool socks. Babushka tied under her chin, Gracie walks down to my house every morning and when we cross paths, the sky streaked magenta with the dawn, we often stop for a few seconds and exchange bits of information about the weather or our lives.
Some days, Gracie is the only other human being with whom I interact, and that small exchange is enough to sustain me. Yes, living alone, I do have my spooky nights and frustrations with having to cope with every event and decision myself. I do sometimes feel outside of “normal” social circles, but it wasn’t until I became chronically ill that the spooky nights became the “dark nights of the soul.” It wasn’t until I became chronically ill that I felt my cherished solitude slip away into the chill of loneliness.
The concept of loneliness comes with a lot of guilt attached. Loneliness is still shameful, a taboo concept, one that is rarely openly discussed. People can now more freely talk about their divorces, cancers, drug or alcohol addictions than they can their loneliness. Loneliness still suggests a character defect, the “loser” label. You don’t have a partner or haven’t been able to “communicate” effectively with the one you have. In the pop-psych lingo, loneliness means you haven’t made enough of an effort to socialize, or that you have a fear of intimacy. In an extroverted world, loneliness means that you’re a misfit.
The ill and disabled are by definition misfits. Confined or unable to engage “normally” in the world, our loneliness is even scarier to contemplate because it comes with more dire circumstances and few options. Any discussion of loneliness usually creates discomfort on every side. Any discussion creates accusation by yourself or other that you are “feeling sorry for yourself.” But let me try.
The first kind of loneliness, the-Chair-#1-I’m-alone-here-and-can’t-move-and-it’s-35-degrees-below-zero-and-the-furnace-could-go-out loneliness, is actually terror. It is bone-chilling helplessness. It is the purest and the most anxious loneliness. Either help arrives or it doesn’t. It’s do or die.
In its horror, Chair #1 loneliness may seem simple on the surface, but underneath it carries a tremendous undertow. The real fright of Chair #1 comes not so much with the fact that you are alone but that in that loneliness you must convince someone else that something is wrong and then rally him or her to action. You must communicate with another on an absolute level – such a seemingly simple yet ever difficult thing to do. Months after the event, I was still stunned to realize that I had such as hard time “connecting” with anyone while in Chair #1. And as the danger and severity of the diagnosis became more clear over time, I still didn’t feel like the situation was registering with those closest to me.
“People glide right by illness and don’t want to see it,” my therapist, a very wise woman, told me.
W. H. Auden understood this “glide” in his famous poem “Musée des Beaux Arts”:
About suffering they were never wrong,
The Old Masters: how well they understood
Its human position; how it takes place
While someone else is eating or opening a window or just walking
dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there must always be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer’s horse
Scratches its innocent behind on the tree.
In Breughel’s Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water; and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.
Certainly, I’ve strapped on those ice skates many times myself and glided right by the suffering of others. I can’t say that my stay in Chair #1 has driven me to hang up my skates forever, but it has allowed me to edge closer to the knowledge of the Old Masters. I now understand suffering’s “human position” at a deep, visceral level, and know that when we sail by a drowning boy, we fail to take in not only the boy, but something larger, more mythical. When we fail to notice the boy, let alone rescue him, we play right into the hands of the fates. We fail to confront our own attempts at escape from Minos, our own attempts to escape death. In that failure we miss an opportunity to understand how to live more fully, to stay away from the hot rays of the sun that will melt our wings, and to assume our rightful place in the universe.
Chair #2 gets more complex. This is the loneliness of vulnerability. In the bathroom stall dependency becomes real. Whether you have to abandon yourself to thirty-nine people, or to just one, you still must maintain your self-dignity. Chair #2 loneliness can at the same time feel invasive and healing. You acknowledge your difference but must allow yourself to be cared for. While Chair #1 can feel disconnected, Chair #2 is the Great Connector. That is the real beauty of Chair #2.
At least for a moment. After Kelly and Katrina patted me dry that day, they walked out the door and virtually vanished from my life for four or five months. They’re busy people, I rationalized, but the pull of our closeness in Chair #2 and the tug of their disappearance saddened me. Finally, well into the summer, Kelly confessed that the Chair #2 scene had completely freaked her out, that she couldn’t take it, that it reminded her of her mother’s death and that was something she’d never grieved.
At first I was wounded by Kelly’s confession. Oh, great, I thought. You have the option to flee, but I don’t.
“Our contemporary culture doesn’t attend to the sick and dying anymore,” my therapist tried to explain. “Just two generations ago, people dressed their own dead and laid them out in their homes. Now we don’t even touch them. We pay strangers to do all that.
“If I could pay a stranger to lay me out right now, I would,” I joked.
Ultimately, I was grateful for Kelly’s honesty and forgave, remembering what she had done for me. I realized that there were many on my “list” who had probably experienced the same phenomenon. These people said they were “busy” and I knew that was so very true, but now I also know that everyone emotionally distances from the ill, even your nearest and dearest, even the kindest and most compassionate. And some outright abandon. “You were sick and alone, and that’s the scariest thing for anybody to face. So many of us ran away from you,” one my friends admitted.
“I just don’t know what to do with my emotions when I see these people again. Are we going to pretend like nothing happened?” I asked my therapist.
“Step back and reevaluate the friendship,” she said.
“But I’m having to reevaluate almost every friendship.”
“That’s right,” she said. “And if you were partnered, you’d be having this same difficulty with your significant other.”
This is the real pain of Chair #2.
Chair #3 is the loneliness of infantalization, of being stuck physically and emotionally. You want to be comforted, to be encouraged, to be held and rocked. You want everything you had, or in most cases didn’t have, in your childhood. Chair #3 is primitive, frustrating, shameful, and filled with flashbacks. I sat in Chair #3 that day and all my “stuff” came up, as if I were clicking through the slide show of my life. Tray after tray of images beamed on my interior screen – the good, the bad, the ugly – from the thrill of my first airplane ride and the way the wings dipped and dived over the rolling summer-green Loess Hills near my home, the fright of my second car accident and the way the automobile spun around uncontrollably on the winter ice. From the gift of my first ice skates one Christmas morning, and later that afternoon my attempts to maneuver their blades across the lagoon, to my wiggling and wobbling attempts to maneuver in and out of relationships in my adult life. From my first splash in academe in second grade with a thoroughly researched A paper on milk, to my first failure and fall from grace weeks later when my teacher hung my artwork upside down.
Months, seasons, and years juxtaposed with each other, reversing and fast-forwarding, collaging, blurring and focusing and blurring again. While Chair #1 is raw trauma, Chair #3 is the confrontation with that trauma. Suddenly you must look at yourself on the screen, with all your strengths and imperfections – the little lines that have formed around your eyes, the extra pounds you’ve gained. You cannot back away. You cannot sail calmly out of the room. Your own image is blown up larger than life in front of your face. The carousel clicks to my face at four years old, beaming, tongue out, licking the frosting from my fork, one big bite of birthday cake about to go into my mouth. The carousel whirls to the grimace on my lips, tongue out, when I am facing down my playground tormentors when I was eight. The carousel clicks to the powerful arms of the neighbor boy who tried to choke me when I was ten, then the arms of the college boy holding me down on the bed, trying to date-rape me when I was twenty. The carousel clicks to my mother’s arms securing the sides of my crib when I was two, then my arms lifting the sides of her hospital bed when I was twenty-two. The carousel clicks and whirls. The carousel spins uncontrollably on thin ice. Chair #3 is the ultimate heart-throb of separation and abandonment and can land you right smack in Chair #4.
I sat in Chair #4, a wheelchair – the fold-up variety – and emotionally everything collapsed around me. On late Wednesday afternoons, the county handicapped bus arrived in my lane. The friendly driver greeted my dog, then tried to maneuver me in my wheelchair down the front steps, over the ice and snow, up onto the lift and into the van. Once I was belted in place, we bounced along in the frigid weather, the driver making conversation, shouting back to me about the songs he had written to perform on his guitar, his voice echoing in the cavernous empty van.
I had been trying to keep teaching my graduate class – one night a week from seven until ten o’clock. We were only two weeks into a fifteen-week semester when I found myself in Chair #1. I needed the money from teaching and knew that my absence would cause the department nightmarish hassles. So each week I crawled out of bed, dressed, and got myself to the university. There I threw myself into the professional role, taught with cheer and confidence, then returned home, in too much pain to even step out of my clothes, and crawled back under the covers for another week.
And the weeks stretched into a month. With only slight marks of improvement. The parade was long gone, my family of whish-boomers having returned to their extremely active lives. I coped with two hired helpers who each came in four hours a week and a loyal friend who made a weekly pot of soup. Most of the time I was alone. Bare, bald alone. This state was different from the self-imposed exile of my youth. This condition was superimposed, so at first I fought it. I thought about cross-country skiing, about the concerts and plays I was missing. I railed against myself for having to cancel readings and writing assignments from major newspapers. And I longed for company, some steady, quiet, reassuring presence.
“I wish I just had a sister, or cousin, or aunt, or someone who could come and stay for a few days,” I told my friend the soupmaker.
“Nobody has that,” she replied. “And even if you were married right now, most spouses would leave a mate in your condition.”
The voice of reality. After a few days of squaring myself off with that remark, I finally tried not to think about what could be happening but instead notice what was happening. First the ceiling fan became interesting and I learned to meditate to the tilt and twirl of its blades. Then I began to notice more nuances, how the shape of the clouds could predict the brushstrokes of the sunset, how as we headed toward spring, the days becoming longer and longer, the geese began to venture farther and farther from the neighbor’s coop.
I was finally home long enough to peer out the window long enough to figure out how Scruff, one of the pygmy goats, could escape from the pen while Mac and Shenanigan couldn’t. At last, I saw Scruff take a running jump from the top of the shed, plant his hoof on the five-foot-high cattle panel, twist and spin in the air, doing a back flip and landing with grace on all fours on the other side of the fence. I was finally home long enough to spot the red fox slinking back toward the ditch in the early morning. As if in one breath, his whole body disappeared into his den, the den I’d never before been able to find.
Above ground, the Hyakutake comet streaked through the sky. While others traveled to observatories and strained to locate the celestial body, its presence filled my window. Its tail, millions of miles long, trailed across my vision through the night and led my thoughts back down to earth where the ground lay frozen and bare. In its dormancy, my garden plot readied itself for spring, fro the arrival of my hoe and spade, an expectation I was becoming more and more worried I could not meet.
I was home long enough to meet every UPS delivery and began to recognize the sound of the home health aid’s car, its low throaty voice, almost like that of a heavy smoker, when it pulled in the lane. I learned the growl of the mail carrier’s Jeep, its wheels spinning in the mud near my box. I learned the whine of the poacher’s light pickup truck parked on top of the hill, a rifle poking out the window in hope of popping off a deer running down by Picayune Creek.
When I watched the deer dash through the trees unharmed, when Donna appeared at the door with the first six goose eggs of the new year, when Scruff wiggled his way back into the pen, this time through the tiny crack in the gate, I learned to sit back in that wheelchair and do what those doctors had told me years ago. I learned to live with the pain.
But the pain went on. And the months began marching right toward spring break, a week when many of the whish-boomers fly off to Aspen to ski or to the Caribbean to snorkel along the coral reef. I skied down my own slippery slopes, my mobility improving during the sunlight hours. I was now able to bend over to pull on my socks, to reach up and blow dry my hair. But when darkness descended, my joints locked into place like the brakes of a wheel-chair. My pleasure in the nuances of the sunsets disappeared as they began to mark the transition into fitful nights of the Click and Clack Brothers reruns. The terror of Chair #1 revisited me when I woke in three a.m. darkness with a hot flash, sweat streaming down my body. I could not raise my arms or kick my feet to remove my down comforter. I lay there until morning staring into the night.
A huge chasm opened between me and the rest of the world. I looked toward others for support and a cacophony of well-meaning voices rose up to fill the empty spaces. You’re making a joke of everything, taking this too lightly, some said. You’re making too much of a deal of this, others said. You’re not asking for enough help. You’re asking too much. You need to let me know your needs. I’ll pick you up anytime. You live too far out and will have to find your own way. Everyone is really busy. You look good. You look really old. You’re so robust it’s hard to believe you’re sick. If I didn’t have Fritz, if I didn’t have Gary, if I didn’t have Jake, I’d be alone, too. I know what it’s like, I had gout for two days. You look good. You look like my grandma. I know what it’s like, I had the flu for five days. You must’ve done something really horrible in your past life to bring this on yourself now. You’re such a good person, why’s this happening to you? Are you depressed? I’m glad you can be so cheerful. Why don’t you move to town? Why don’t you go to New York and see your specialist? Why don’t you move to New Mexico?
“Is there anything I can do for you?” a friend from Alabama finally asked one night on the phone. “I feel so frustrated from so far away. I there anyone I can call?”
“Yes,” I said. “Do you have a pen and paper?”
“Shoot. Who is it?”
“Well, I don’t know the number, but you can get if from Pontiac, Michigan, information.”
“Okay. First name?”
“Jack.”
“Jack…Last name?”
“It’s spelled K-E…”
“K-E…”
“V-O-R…”
“V-O-R…No, no, I’m not calling him.”
Suicide is actually not in my ethical code. Although I have had suicidal thoughts during bouts of other severe illnesses, I’ve fought too long and hard to stay alive to prematurely put and end to my existence. Yet this time the three a.m. darkness became a literal state of mind, a black mood I couldn’t shake. I was Inanna, the Sumeriance goddess of heaven and earth, descending into the underworld. Totally naked by the time she arrived, stripped of her powers and pretenses, Inanna was hung up on a hook and left to die without hope, a putrefying piece of green meat.
I thought about staying forever in the underworld, and then I thought again. No, I didn’t really want to call Jack. I just wanted to get drunk. To alter my reality for an hour or two. But since medical restrictions had eliminated alcohol from my diet for the last twenty-five years, booze was out. And wisely so. But what’s a good Irish Catholic girl to do? One night, almost as reflex, my lips began moving in prayer. Hail, Mary, I began.
Raised a strict Catholic during my youth, but disillusioned by both the structure and strictures of the Church, I have been a “recovering” Catholic most of my adult life. Although I’d lost the format, I had always retained the essence of my faith – that of a deep communal mingling and connection of all spirit and flesh. As I lay awake one night, drifting in and out of sleep, the sky dark and all-enveloping outside my windows, I flashed back to the lives of the saints, that other parade of characters that whish-boomed their stores through my early life.
The martyrs might provide the easiest answers. As a child they at once fascinated and horrified me with their boilings, beatings, and beheadings. Yet in my present state it wasn’t the martyrs and their gory ends that gave me solace. Rather, the mystics came to mind with their kinder, gentler acceptance of suffering. The Zen saints, as I liked to think of them: St. Theresa of the Little Flower, St. Theresa of Avila, St. John of the Cross, St. Clare of Assisi, those men and women who had chosen a path of deprivation to reach some higher state of consciousness. The ceiling fan came back into focus, the tilt and twirl leading me to a meditation on how the mystics had each gone through their own kind of hell, how they had allowed their solitude to take them down a different path, where they found an interconnection with all being, a life of love and giving.
I stopped answering E-mail and the phone. I stopped playing the radio and the stereo. I let the silence fill my room. I read Thomas Merton, Aldous Huxley, Hidegard of Bingen. I read Meister Eckehart, Thomas à Kempis, and the Rule of St. Benedict. I read Walt Whitman, the Book of Job, Lao-tzu, and Mary Baker Eddy. All these people understood the same basic truth: that suffering can either pull you inward, running you guarded and bitter, leaving you there forever on the meat hook, or it can push you up out of the underworld to another level of consciousness, where, as the Buddhists say, we can find the jewel in the lotus of the heart. At its best, suffering opens the heart to others’ suffering and produces love and compassion: what we all long for from each other but find so hard to both give and find. The love for our fellow humans seems to inevitably work its way “down” toward all other living creatures and “up” to find its full force in love of God or a higher power.
“What does this mean?” asked Hildegard of Bingen. “No creature is so dull in its nature that it does not know the completeness of its case. What does this mean? The sky has light, the light air, and the air winged creatures. The earth nourishes greenness, the greenness fruit, and the fruit animals. All things bear witness to this order because the strongest of all possible hands ordered these things.”
Hildegard as well as the other mystics knew that the spiritual was not found in the grandiose, but in the small growing things and the ordinary moments that previously you may have overlooked or found mundane. The antics of a pygmy goat, the sound of a care in the lane.
The German poet Rainer Maria Rilke understood these same mystical sentiments:
I Find You, Lord, in All Things and in All
I find you, Lord, in all Things and in all
my fellow creatures, pulsing with your life;
as a tiny seed you sleep in what is small
and in the vast you vastly yield yourself.
The wondrous game that power plays with Things
is to move in such submission through the world:
groping in roots and growing thick in trunks
and in treetops like a rising from the dead.
I fixated on the small, the tiny seeds. In my case, the literal seeds of my literal garden. Lying awake in bed at night, I’d worried about how I would ever prepare the soil, plant, week, dig, and harvest. I contemplated making raised beds. I contemplated making trellises. I contemplated not having a garden at all. The covers up to my chin, I stared out at the comet and remembered reading Viktor Frankl’s classic Man’s Search for Meaning my freshman year in college. The book’s message flooded back to me. Those who survived the Holocaust held on to a faith in something spiritual, no matter how large or small – be it their God, their memory of family, or the fulfillment of a special talent.
Finally, I got up one morning, clomped down to the basement with my walker, and started my garden seedlings. Two little seeds in each pot. Then back up the steps, one slow foot in front of the other. Four trays in front of the window, the sun streaming in through the glass. I put all my faith in those living plants – tomatoes, peppers, cabbages, Brussels sprouts, and broccoli – even though I had no faith in my ability to garden ever again. I fussed over their temperature, their watering. I misted them with organic fertilizer. I labeled their pots, switched their position in their trays, and watched their tiny necks struggle up through the soil. “The Ground of God and the Ground of the soul are one and the same,” Meister Eckehart said, and I was getting ready to transplant my seedlings into the ground.
The spring began. I still lay awake at night and the fan went around and around but my mind was at rest. Lawrence LaShan, the research and clinical psychologist who works with cancer patients to help them rally their weakened immune systems, asks his clients: If your whole life were designed to carefully and lovingly teach you a lesson, what would that be? Two little seeds in each pot. Stripped of all connections, it was only then that I could experience the inner-connectiveness of all things.
“Let’s look at it another way,” my therapist said one day. “Your illness aside, if you could change your reality or have a different kind of existence, what would it be?”
I looked at her blankly.
“You like your life?”
“Yes.”
“Despite the hardships, or because of them, you’ve carved out a pleasurable life.”
No trumpets sounded, no locusts or horses swept across the land, but now the air was crisp and clear, the starts so bright that I had to pull down the window shades that night to sleep. I began talking to people again and enjoying their company, wanting nothing more than that.
Again, as the Buddhists describe it, I was letting go of desire, the need for support, the need to be understood. In place of desire came a sharpening of intuition. My mind became a kind of caller ID. I began to know who was calling on the phone when I heard the first ring. Old friends came to mind, and there in that day’s mail was a letter from them. So many uncanny things happened, so many strong hunches entered my head, yet hard as I tried to go with them, I couldn’t quite trust myself.
One afternoon I pulled myself out of bed, got dressed for class, sat in the wheelchair and waited for the country bus. They’re not going to come today, I said to myself. Something different is going to happen. That’s ridiculous, I thought. The bus was ten minutes late, then twenty, then thirty. The guitar player must have had a heavy schedule, I thought. Or a late night. He’ll be here soon. No, he won’t, I answered. Then he was forty-five minutes late. I called the dispatcher. No, he said, your name’s not on the list. We’re shut down for the day. I’m sorry.
“But you pick me up every Wednesday.”
“I’m sorry,” he said. “We’ll do better next week.”
I looked at my watch. I needed to leave soon to get to the university on time. Briefly, I thought about calling around trying to find someone to come and get me, but it seemed like a lot to ask at the last minute. And there wasn’t much time. I didn’t think about canceling the class. I just got up out of Chair #4, took the steps with my walker, and climbed into my car. Carefully, I checked my rearview mirrors, as I couldn’t turn my neck. I forced my feet up on the pedals, and in screaming-meemies pain, drove to town.
Home the next day, I began sitting for brief periods in my desk chair to work at the computer. The pain was intense but the wheels on my desk chair took my to a different place altogether. I’d realized that all of the mystics I’d read had found their fulfillment in some kind of creative activity that gave something back to the world – be it the charitable works of Mother Theresa or the contemplative writing of Thomas Merton.
I’d like to say that once I got back to work and started writing again in Chair #5, loneliness was banished forever. I’d like to say that Chair #5 was Nirvana. I’d like to say that when Lady Lazurus got up out of Chair #5, she could walk forever without a brace or a prop or a limp. All I can say is that while Chair #5 is a place of peace and productivity where solitude again reigns, it is also a chair of detachment, an integration of alienation. All I can say is that at the time, I had to go through the distress of Chair #4 to propel me to Chair #5. Life transforms into art. Chair #5 is a moving forward with hope despite the pain, connected wholly and intimately with both the light and shadowy sides of the self.
“You have no intimacy in your life,” a friend once told me. The reality was that I had no mate, no sharing of physical affection. This was true. But when one is ill and alone, one is forced into a self-intimacy that can result in a larger, more cosmic closeness with the rest of the world. Sexual intimacy is a wonderful, pleasurable thing, satisfying a basic instinct. But the compassionate care of Kelly and Katrina in the shower stall, of Sarah at the kitchen table, the altruistic giving of care without reward, might be the ultimate intimacy. And you cannot give or receive unless you’ve stared at yourself in the rearview mirror.
Now, what do I know?
Recovery from chronic illness is looking back. It is similar to recover from the devastation of a flood, for you don’t know exactly when crisis begins and when it ends. The only certainty is that it will surely flood again. I have experienced these five chairs before and I will again. Each time I am surprised by my own pain, how little and much I’ve learned. For this siege? I am up and around. The comet has long since disappeared from sight. The garden soil has been prepared, the seedlings planted in the ground. Early each morning, I am dressed and hobbling down the road again, where I pass Gracie, who smiles and does not mention my long absence. I’ve learned to walk with a cane, learned when and where to lean. And if some nights I still lie awake in the dark, I know that tomorrow the fan will still be there above me spinning around and around.
Mary Swander, The Fifth Chair Healing Circle: Authors Writing of Recovery eds. Patricia Foster Mary Swander Plume Books, New York 1998
Study questions
- How does the author describe herself? What kind of a person do you perceive her to be?
- When the patient occupies ‘chair #2,’ she mentions that those who used to be her friends are now her nurses. What are the changes that take place? What happens to the patient’s relationships over time, and what does this tell you about a patient’s experience with chronic illness? Note how the author refers to Auden’s poem. Le musee des beaux arts, which you have read in Unit 1. How would you cope if you were the patient? If you were the friend who suddenly had to do the caretaking?
- The author states in the section on chair #4, ‘a huge chasm opened between me and the world.’ She goes on to ‘quote’ her friends’ responses to her illness. Think of examples of situations where you experienced or observed difficulty in saying the ‘right thing.’
- What is the fifth chair? How does the author finally manage to make peace with her condition?
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