A Few Words Before They Drag Me Away

In and out of hospital since childhood, Diana Atkinson on a life cut to pieces.

Diana Atkinson
1 January 2005
Photo via pixabay.

“What major surgery produces is a certain quality of loss, a loss with its own nuances, its own character.”
Larry McMurtry, in his 1999 memoir “Walter Benjamin at the Dairy Queen: Reflections at Sixty and Beyond”

You must be naked. You must remove all jewelry, all traces of scent, makeup, polish on fingernails, toenails. Body hair is shaved, as swimmers shave, as though to streamline beneath the waters of consciousness. The body is shaved to prepare it for meat-cutting: bloody invasion with scalpel, disemboweling in the confusing name of “care,” which takes place within the parentheses of consciousness but which is not an aside—is, in fact, a central event, only obscured from the subject’s life-narrative by the fact that he or she is unconscious, and therefore, absent.

Many times I have had to divest for this deepest of dives: major surgery. Preparing to pass through the eye of the needle, I picture myself walking out of my house, never to return. As I walk the solitary desert toward the great, shining needle, clothes and jewelry fall away. Descending as for a ritual bath in the Red Sea.

They kill, then unkill me, and I emerge changed. Less and less able to hold on to material possessions. Less and less interested in holding on. I collect smells, the least tangible presence. They come in very small bottles. I can fit them all in my carry-on, which fits in the locker corresponding to my bed in the bowel ward at Mount Sinai Hospital, Toronto. (There are two posters by the nursing station: one depicting Crohn’s disease and the other ulcerative colitis. Every patient belongs to one of the two tribes. Sooner or later, we each end up in front of “our” poster saying, “See? Here’s what gut I’m missing,” as we explain the editing of our organs to a companion.) Tucked in among my clothes, the tiny vials disappear, like immigrants adapting to the customs of the new country.

I cannot seem to take root. All my furniture folds: desk, massage table, the card table at which I’ve eaten. When I move into a new place, I don’t paint, nor do I drive nails into the walls. I glance around regularly, mentally computing what I’d net if I held a yard sale. I’m prepared, at some subconscious level, to throw things into a rucksack for a night flight, the way my Jewish ancestors fled the Egyptians across the plains.

Years ago, when I was a stripper in British Columbia, the shows were less important to me than the fact that—every six days—I could leave. Had to leave. Find the bus depot or the airstrip; occasionally, the Canadian Pacific Railroad. No one knew my real name, so it was all off the record, in privacy-protecting parentheses.

At four years old, I was diagnosed with acute chronic ulcerative colitis, an autoimmune disease in which the body inexplicably registers the lining of the colon as enemy. The immune system mistakenly attacks it, trying to digest it. Its cause is unknown, but a genetic link to Ashkenazic Jews seems evident. Certainly, stress aggravates it.

The next eight years I was in the hospital more than in school. In that series of hospital rooms, which felt impermanent as any motel, I learned the haiku of objects. A vase of tulips, a stack of books stood out among the generic, hospital-issue split-back gown, plastic comb, toothbrush, box of tissues. My mother brought me these tulips; my father, these books. All else was standard issue. Over the years, attempts to subvert the rule of the institution fail. A diary disappears. A teddy bear gets lost in the hospital laundry. I learned: best not risk what you can’t afford to lose. (Later, I realize: this is why I haven’t had children.)

Your parents sign your body rights away. Conspiring amongst themselves, adults determine the fate of your body, its treatment and handling. Large strangers orchestrate its exposure and invasion by needle, enema, nasal-gastric tube, scalpel. You learn: you can fall asleep intact and wake up three days later vandalized. Heavily edited in the organ department. Strangers broke in during the night and rearranged the furniture.

At twelve, after eight years of incarceration, you are sent forth with a long, blood-encrusted incision scar and an external ileostomy that leaks shit all over your small, stunned abdomen. We helped you, is the message from the institution. Have a nice life. You learn: best not get too attached. Anything—anything!—can be taken from you at any time.

It’s clear to me, almost three decades later, that you can take the person out of the institution but you can’t take the sense of being a mouse in a clockwork out of the once institutionalized person. For example, I want stuff now—dresses, dishes, pretty little lamps—and I am glad to see myself have enough appetite for the world, enough of a sense of belonging here, that I want to decorate a room, adorn my scarred but still lovely body. The way I feel about material desire is similar to the way I feel about physical modesty: I was never allowed to have it. It was removed as an option before it had a chance to form.

Once I wailed to a man I liked, “But I have serious baggage.”

He smiled. “Baggage can be unpacked.”

As I heal from my latest surgery, pleasure—in pretty earrings, in colorful seed packets and speculative paint chips (“Shall I paint my desk area lavender?”), in lace trim on camisoles and my fat, handthrown pottery tea mug—pleasure is how I feel my life-force returning. I love the datura a friend bought me for my garden. I made it a special, round bed, surrounded with chips of crystal, and tiny aster seedlings that should bloom forth when the summer ends and the datura and her beauty have fled. But for now, she glows in white-trumpeted glory from the center of her round bed, even at night.

Growing up in a teaching hospital, not only was I allowed very few personal possessions, but I was not modesty-draped by the teams of male med students, interns, gastroenterologists, and surgeons who examined me. You might say I grew up on exhibit. I was literally raised a public figure. Later, when I published a novel linking my experiences as a stripper with my earlier experiences being stripped for doctors, I found myself in a strangely familiar situation. Like waking from a dream—into another dream. As journalists filed past, probing me about my novel and its roots in my body, my life, I felt violated, uncertain of my rights to privacy. I wondered, What are normal boundaries? I’d begun to realize I’d never learned them.

“Reenactment,” therapists call this business of waking up periodically along the course of one’s life, to find oneself smack in the middle of a drama which, though removed in time and possibly distance from some early traumatic situation, nonetheless manages to recast its characters and reproduce its basic elements with uncanny clarity. In her novel Enchantment, Daphne Merkin writes:

“If your heart is broken early enough, do you begin to mistake pain for love? Do all attachments become inextricably linked with submission? Or do you, perhaps, learn to turn your back on the very idea of attachment—fraught with now-or-neverness, each casual leavetaking suspected of being the last? There are professionals who can be hired, at great cost, to disprove the infallibility of this sort of damage; they talk about nurturing and ego strength and reparenting. It would be nice to think they were correct in their optimism or, at the least, devoted to the act of reparation. Like the psychiatrist who sums up James Stewart’s prognosis in Vertigo: “You’re suffering from severe melancholia and a guilt complex,” he says briskly but not without compassion. “It will take a year to cure.” The audience when I saw the movie howled at this.”

I was never allowed to leave the ward, much less the building. I was often restricted to my room, and sometimes, my bed. In that era before clowns and child psychologists, visiting hours were short and strictly enforced. Nurses thought nothing of tying children to the bars of their beds. Of course I love to leave. I grew up gazing down the hall at the red exit sign.

In the McMurtry piece I quoted above, which I discovered in a wonderful anthology, Unholy Ghost: Writers on Depression, he talks about what he feels quadruple bypass surgery did to him:

“From being a living person with a distinct personality I began to feel more or less like an outline of that person—and then even the outline began to fade, erased by what had happened inside. I felt as if I was vanishing—or more accurately, had vanished…I became, to myself, more and more like a ghost, or a shadow. What I more and more felt, as the trauma deepened, was that while my body survived, the self that I had once been had lost its life…the sense of grief for the lost self was profound. I didn’t feel like my old self at all, and had no idea where the old self had gone…I felt spectral—the personality that had been mine for fifty-five years was simply no longer there.”

McMurtry goes on to say that he was unable to read for two to three years after the surgery, adding, “My inability to externalize seemed to be organ-based, as if the organs to which violence had been done were protesting so much that I couldn’t attend to anything else.” When I first read his words, I felt a pin slide from a bolt inside. Tears coursed down my face before I became aware of myself, first murdered at twelve, now a free civilian in my thirties with a book in my hand.

The external ileostomy at twelve was botched, so I received an internal ileostomy at fourteen. A great improvement on the disfiguring, hated, clear plastic bag of shit glued to my abdomen, it was a tidy little hole where the old outlet had been, on my lower right abdomen, drainable by inserting a tube that fits in my purse. Problem is, the internal, self-closing valve (made from my own tissue) has a tendency to break, and it did within the year. I had my third major surgery at fifteen. At seventeen, I won the national essay contest but dropped out of school anyway, since I couldn’t get through the days without pounding my head against the green-painted cinderblock wall in the girls’ restroom between classes. I was not an alcoholic, not a drug addict. I had very high marks. But despair ran in my blood; it sang in my head. Kill yourself, kill yourself, you little shit.

I had eighteen surgery-free years, during which I was a poster child for residual trauma. In my early twenties, people started standing up on Oprah. Hearing them testify felt like lightning illuminating the night, for a second. Still, incest wasn’t what had happened to me. Septimus Smith, the World War I vet in Virginia Woolf’s Mrs. Dalloway, was the nearest figure I could find who felt as I did—and he jumped out a window, since he couldn’t stop scenes from the war from playing continually behind his eyes.

Modern abdominal surgery was first performed during the Civil War, in the 1860’s. (It developed from gynecological experiments performed on black slaves. Unease about the average woman’s relationship to the medical establishment, anyone?) McMurtry writes, “Such surgery, so noncommonsensical, so contradictory to the normal rules of survival, is truly Faustian. You get to live, perhaps as long as you want to, only not as yourself—never as yourself.” And this is written by someone whose first surgery was at fifty-five. Who might I have been, good God…?! It amazes me, actually, to think of all I’ve accomplished: homesteading in rural British Columbia, stripping (a triumph when you come from the subculture of serious illness—I am a heroine to girlfriends disfigured by ulcerative colitis or Crohn’s disease), writing a novel, getting a B.A., becoming a massage therapist, becoming a good cook. Having friends. Managing, over and over, to swerve from the urge to commit suicide.

The surgery I had when I was fifteen lasted until 1998. I had it redone, only to have it fail within the year. I had it redone in 1999, and again in 2003, and that failed within the year, so I just had it again, three weeks ago as I write this. The alternative, an external ileostomy, is too hellish to contemplate, and so, like others with internal ileostomies, I will undergo as many revisions as it takes to get a stable version. Each time it’s the same nine-inch incision, and I frankly don’t know if I can do it again, so am prepared to (again) consider suicide if it breaks within the year. Don’t you dare judge me.

If there’s one thing I’m giving up on (I changed this to “letting go of,” stared at the screen, then changed it back), it’s the childish idealism that used to make me believe it was possible to be understood. I used to believe that through cultivating skillful precision with words, I could make myself understood. I don’t think so now. I come from the subculture of longtime serious illness and multiple surgeries, and I make a distinction between the relatively unscathed, no matter how well-meaning, and those of us who’ve been through the war. When a nurse I’ve never met approaches me, I can tell immediately whether she’s just read the guidebook or whether she’s actually visited the country.

Most disturbing to me is the fear that, having been raised by countless changing shifts of all-but-faceless personnel, my expectations of, and subsequent capacity for, deep and lasting relationship is impaired. When a love relationship tanks, I have a tendency to move out of state. It’s a compromise: I am profoundly uncomfortable in my body at such times, like when you can’t find a cool spot in hot sheets, no matter where you turn. As a result, my address book is a mess, and friends write my name into theirs in pencil. The last several years, I’ve crisscrossed the country. Sometimes it feels like people swim up, move their lips, then they’re gone. Like a video game.

To be fair to myself, though, all my moves have had reasons that still make sense to me. I lost my apartment in the surgery of 2003, for example, and turned up in Southern California for a surreal few months, to stay with some friends who offered to take me in. Herein lies the grace of my precarious physical situation. I carry Pema Chödrön’s advice, “Get used to the feeling of falling,” on a scrap of paper in my mirrored compact. It’s the fortune from the cookie of my life. When I am bereft, wandering the streets in a post-surgical altered state, kind strangers offer me their guest rooms. I walk their dogs, make soup, sweep the kitchen floor. Maybe we all have this strange charm, but only find it out when everything has been taken from us: car, credit cards, money, job, place to live, internal organs.

Sociologist Erving Goffman devoted a chapter (“On the Characteristics of Total Institutions”) in his book Asylums: Essays on the Social Situation of Mental Patients and Other Inmates to the features common between long-term care hospitals and prisons. Prisoners, we all know, continuously plot their escape. What is the difference between my experience as a child in hospital in those draconian days, and the experience of a man captured and tortured as a prisoner of war? Neither signs a consent form. Neither can refuse handling. Neither can leave. It comes down to intent. Supposedly, they were trying to “care” for me. What it felt like was, “We’ll cure you if it kills you.”

To this day, I’m not sure what I’m entitled to, whether I’m welcome in this world. Where does all this leave me, spiritually?

Jewish identity is at once a religion and a bloodline. Having shit blood for eight years with a disease not exclusive to, but disproportionately represented by, Jews, I feel Jewish all right. But, uh, not in a good way. (Probably didn’t help that my father deserted the family and moved halfway around the globe to Israel the week of my first, disfiguring surgery, quoting the Talmud over his shoulder, as it were.)

I disliked God from the beginning, as it seemed He did not like me. And His Son, rising up from the dead, struck me as even creepier. Growing up as I did, with a morgue in the basement, a few floors below me, I already worried that the dead weren’t really dead. The hospital air felt riddled with ghosts. Given the number of unanswered questions (“Why is this happening to me?” Not to mention, “Where does the soul go, under general anesthetic?”), Christian theology did not grab me, since it seemed to raise more questions than it answered.

I’d like to say Buddhism has been my rock and my comfort, but I don’t know if that’s really true. Still, you’ve gotta love any belief system in which sitting still and staring into the middle distance is considered perfect form. After all the drugs and all the falling, I barely recognize this I anymore, so it’s a good thing that’s okay with the Buddha!

David Malouf wrote, “You will be separate from yourself, and yet be alive.” I feel dazed, and, at a remove, as if I am grieving. All my life I have been aware of a girl, and then a woman, who exists, if only on the plane of my imagination, living out the life I might have had If All This Hadn’t Happened to Me. I’d have children by now, by my childhood sweetheart. A farmstead, where I’d can and pickle vegetables and make quilts. Yesterday, I bought a canning kettle at Wal-Mart. I will make Dill Beans and Indian-Spiced Eggplant Pickle from a book I’ve got, Small Batch Preserving.

So much of my life has been a blend of moving a lot, and hospitalization for brief periods when my ileostomy becomes inflamed, and for longer periods when I have to have surgery. It’s not a pretty life, nor a tidy one, even on paper. I notice that I feel ashamed a lot, as if I have somehow failed. I am ashamed to be an adult who is so, in one word, dazed.

A friend wrote to me recently about the “the four limitless ones,” (brahmaviharas) and the Buddhist idea of not being ashamed of your shame, etc. Only, I feel the need to joke, “Now I’m ashamed of being ashamed of my shame.” In her book Faith: Trusting Your Own Deepest Experience, Sharon Salzberg advises the meditator in pain to “take apart the chord,” i.e., parse the elements, of the pain. So, I’ve identified a couple of the root causes for my shame: I am ashamed of the degree of longing I still carry. For physical touch, physical connection. I grew up a little lab animal, and I wanted to be petted. I am ashamed of not being an achiever like the women profiled in Oprah magazine. (“At 42, Helen Wheels is Chief Financial Officer of Important Bank, and has three strapping teenagers.”) I don’t see my story reflected in the media so that Larry McMurtry essay felt like little-Black-girl-sees-little-Black-doll-for-first-time.

Recently I’ve been attending church, despite my theological misgivings. It’s a first for me. I don’t understand much about Christianity, but I like the feel of the people around me, their open hearts as they sing the lovely hymns. Recently, a woman came up to me after the service. I saw that she was tremulous; I read an aura of shock—I guessed, impact trauma—in her carriage. Sure enough, when I told her I was a massage therapist who’d been accepted to do a master’s in body psychotherapy at Naropa University, she told me of her car accident two years ago.

“I’m embarrassed,” she murmured, “at the way I’m still affected by it. Almost in a fresh sense every day. Bodywork is helping me. I’m realizing, it’s not ‘just’ my body. I am my body.” Looking deeply into her hazel eyes, with their lashes like iris fronds rimming a pond, I said softly, “Ah, but the body does not register time in the same way the mind does.” She looked so relieved. I felt I was speaking to her in her inner language of loss, of shock.

With the money I get from this piece of writing, I plan to buy peony bushes and tulip bulbs for my garden, even though this is a rental apartment and I don’t know how long I’ll stay. As I plant them, I know I will think, as I so often do these days, of Queer Nation’s slogan: “We’re here. We’re queer…. Get used to it.” I do not want to keep apologizing for my legitimately acquired wounds. And I’m glad, I’m really glad, I didn’t kill myself back in January.

As I write these closing lines, I am now scheduled for another surgery next week. I’m on a liquid diet—four food groups: soup, juice, booze, and ice cream. My sister Rebecca drove me to two gelato factories, so I have three flavors in my freezer—grapefruit, passionfruit, and chocolate peanut butter. My friend Joyce brought bright yellow daisies, and I’m pleased at the thought that people will send flowers. Flowers are essential.

Diana Atkinson

Diana Atkinson is the author of Highways and Dancehalls, a finalist in the Governor General of Canada’s Literary Awards. She is a massage therapist in Boulder, Colorado.