NDJ:4 Margaret Spier, PhD

TOUCH

Love Does That
All day long a little burro labors, sometimes
with heavy loads on her back and sometimes just with worriesabout things that bother only
burros.
And worries, as we know, can be more exhausting than physical labor.
Once in a while a kind monk comes
to her stable and brings
a pear, but more
than that,
he looks into the burros eyes and touches her ears
and for a few seconds the burro is free and even seems to laugh,
because love does that.
Love Frees
                             — Meister Eckhart

The hospital where I work is old and poor. Approaching from the subway station, your eye is drawn to its looming Gothic buildings—gabled towers of deep rusty brick—and not the leafy campus on which they sit. It is the fall of 1996, and I have just begun a rotation on the Pediatric Consultation/Liaison Service as part of my internship in clinical psychology.

To the envy of my fellow interns, I’ve been given a private office to use while on the service. The office is a cozy room tucked away in the attic dormer of one of the outpatient buildings. Outside the window is a small balcony where birds and squirrels congregate in the early morning. The squirrels are aggressive. One morning, I leave my breakfast on the desk while I step outside to talk to a colleague. When I return, my breakfast is gone, wrapper and all, and my papers are scattered and torn.

A pack of abandoned, and feral, dogs has taken up squatters’ rights outside the building. I debate reporting them to the Humane Society. If they are picked up, they may receive medical treatment and possibly be adopted. Or it may be the end of their lives. And so my struggle with life and death begins.

I’ve asked to meet with terminally ill children. There is a pediatric oncology unit at the university hospital across the street. Dr. Taylor, the attending physician on the unit, has embraced the idea. Within twenty-four hours, he has several teenage girls he wants me to see. One has a guarded prognosis and he thinks she might benefit from talking to me. Her name is Marie. The psychiatrist in charge of her case provides me with some background information.

Marie comes from a small island in the West Indies. At sixteen, she is newly independent, and has come to New York to spend a month with her aunt and uncle. She wants to shop, go to the Empire State Building, and maybe meet a boy. When a small bump on her arm starts to grow, her aunt brings her to the doctor. Within days, Marie is diagnosed with osteosarcoma, bone cancer. Marie’s mother comes to be with her as she goes through a round of chemotherapy. Then Marie’s right arm is amputated at the shoulder. Our first meeting is the day after the surgery.

As I approach her room, my stomach tightens. I’m not sure what to say or do. I feel lost without my usual frame of reference—a therapy room with its traditional seating, the requisite fifty-minute hour, privacy, and the patient coming to my space.

Now I am about to enter her space. The hospital itself takes up four city blocks and, with its stodgy yellow brick, boxy shape, and flat roof, is a monument to 1950s architecture. In its plainness and regularity, it oddly exudes safety.

The pediatric oncology unit takes up half a large floor. Even though the walls are painted a tranquil turquoise, the atmosphere is bustling. Marie’s room is at the end of the corridor. When I enter the shades are drawn and the lights are dim.

Marie is sitting up in bed, encircled by her mother, two nurses, and attending physician. She is wearing a hospital gown, grown limp and faded from washing. The gown is lopsided, high on her left shoulder and sloping down to her waist on the right side where it is tied in a makeshift closing. Her right side is thickly bound in gauze bandages, which demarcate the sheer cliff her shoulder makes now that her arm is gone. Even swathed in bandages, and with her head bald due to chemotherapy, she is beautiful. Long and willowy, with blackberry skin and fawn-like brown eyes she could easily be mistaken for a fashion model. The television is on, but the chatter in the room obscures the sound. I pull up a chair and tentatively enter the casual, and cheerful, conversation. But I think, ‘ Who am I her el’

The group shares general talk about the weather and the television show—is it Jerry Springer? We chat like acquaintances at a tea party. I feel as if I am cheating. Shouldn’t our conversation be deeper? After an hour, the room has emptied—the nurses are busy with other patients and Marie’s mother is outside talking to the doctor. The moment we are alone, Marie turns to me and softly asks, “Do you have children?” I wonder aloud about her question and she says, “I don’t know if I was a mother if I could stand to have this happen to my child.” I ask how she can bear it for herself, and instead of responding directly, she says, “Will you touch my arm?”

In graduate school, I have learned the vicissitudes of touching a patient—seduction, boundary violation—but I place my hand lightly on the site of the amputation and keep it there, cupping her shoulder, as quiet tears slip down her face. With this touch, we have begun a relationship that will last until her death one year later.

Marie’s request had many levels of meaning: a test to see if I can be with her through all she has to endure; acknowledgment that her arm really is gone; and, perhaps most important for a young woman, the desire to know whether someone else will still want to touch her.

When one is with a person in emotional or physical pain, one of our basic instincts is to touch. Our bodies lean forward and our voices get softer and slower. We yearn to soothe. We reach out to rub the person’s back or rest a hand on their shoulder or arm. And when we are with someone who is gravely ill, touch can be even more important.

As I grapple with what it means to touch Marie, a young woman I barely know, my clinical supervisor relates one of her own experiences when working at the Rusk Institute of Rehabilitative Medicine. She had been treating a man who had just come out of a lengthy coma and was severely brain damaged. He couldn’t speak and his arms and legs were twisted and partially paralyzed. He had sensation in his body but his leg was the only limb over which he had control. In an effort to maintain contact, she would stand at his bedside for twenty minutes every day and hold his foot. He was not able to talk but made unintelligible sounds as she stood holding his foot and talking to him. She remembered how appreciative he seemed and recalled how he would smile and “talk” to her. During this time, he was not alone.

The amputation does not slow Marie’s disease. Quickly the cancer metastasizes to her spine. The decision is made to remove a portion of her spine and replace it with a metal rod. There is debate about the surgery among the staff. Some among the staff wonder if such an arduous surgery is worth the few months it might give Marie. Many of the nurses are angry that the meeting to discuss the surgery is held right before Christmas, clouding Marie’s enjoyment of the holiday.

Marie loves Christmas and can talk about it for hours. I am captivated by her tales of Christmas back home. Everyone who lives on the island buys new furniture and paints their houses, inside and out. She longs to be there with her father and younger brother. What she wants most is callilou soup. When Marie and her mother talk about food and home, it is as if sickness and pain dissolve.

The surgery is complicated and lasts twelve hours. Over the course of the surgery, it has been difficult to regulate Marie’s fluids. When I see her in the ICU, her body is so swollen I can barely recognize her. I try to suppress my shock, hoping to contain both my own distress and hers.

Marie is intubated and can’t speak. Her eyelids are so puffy that her eyes are almost sealed shut. Not knowing what to say after my initial greeting, and feeling awkward, I get a washcloth from a nurse, soak it in cold water, and hold it to her eyes. As I refresh the cloth, and use it to soothe her eyes and brow, she smiles faintly and begins to motion with her hand. Although I have no idea what she’s saying, I’m relieved that she is responding to my attempts to communicate. And I wonder if she is in distress or if there is something she needs. I carry on a one-sided conversation trying to guess what she is telling me, to no avail.

Days later, when Marie can speak again, she says she had been talking about the remote control for the television—it was just like the one she has at home! We laugh about the “seriousness” of her communication and my failed attempts at translation. But I sense that what was important was not what I said but what I did.

The surgery is in February and after an arduous stay in the ICU, Marie recovers. But by May, it’s clear that her cancer is advancing and there are no more standard treatment options. I hear the news from her attending physician and go to see her. As I walk down the clattering hospital hall, I hear nothing, see nothing. Marie’s bed is by the window. It’s a glorious spring day, and the world outside is bursting right beyond her.  She’s sitting in bed and calmly smiles at me as I sit down beside her. She says, “Dr. Patel has just been in to see me. I knew when he came in what he was going to say.” I ask how, and softly, so softly, she says, “Because when he came in, he sat down in the chair by my bed. Dr. Patel never sits down. That’s how I knew I am going to die.” I pull my chair close to her bed and we sit in silence.

It is common to have a meeting with the family to review all the options. The meeting is held in a large examination room in one of the outpatient clinics. There’s really no comfortable place to sit, and Marie sits perched like an awkward bird on the examination table. It’s noisy, and occasionally a nurse knocks and interrupts to say that the room is needed for someone else. The strain of the situation seeps into the air.

Marie’s physicians raise the possibility of experimental treatments. Both her mother and her physicians want to give Marie some hope that she might recover. And they want this hope for themselves. But there is no experimental protocol currently available and, at any rate, Marie has told me that she has made the decision to stop. She doesn’t know how to tell her family and sits silently as the conversation swirls around her. In a private meeting with the family, Marie is finally able to say that she wants to return home to spend her last months with her family and friends.  She wants her hair to grow back before she dies.

Marie spends two more months in New York. Her hair grows into a corona of soft curls. She eats what she wants, goes shopping, and to the beach. On a blistering summer day, I visit her at her aunt and uncles’ home and meet all the family, including Granny, who has come to New York to accompany Marie home. The day is filled with laughter. Late in the afternoon Marie and I take a walk. As we amble through the neighborhood, Marie says that she is not afraid of dying, she only fears being alone. And she has a regret. “Oh, Margaret, I wish I could have had a boyfriend!” At the end of the day, we lock eyes and hug good-bye.

We speak, for the last time, on the telephone. It is Christmastime again and Marie says, “I’m propped up in a chair watching everyone work like crazy.” Soon she will be eating her beloved callilou soup.

By the end of January, she is dead. Her cousin says, “She was resting in bed and she called her mother and father into the room, closed her eyes, and died.” Her death was as gentle as her life. How thankful I am for the chance she gave me when she asked me to touch her arm.

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