Dirty Pencils

By Daniel Shapiro, PhD

Bone-marrow transplant is a misnomer. I had an autologous bone-marrow transplant, meaning that I donated bone marrow to myself. Chemotherapy kills rapidly dividing cells, not discriminating between those healthy and those diseased. Bone marrow is the factory that produces cells. I could take otherwise lethal doses of chemotherapy because I received my bone marrow back after the chemotherapy and once it gets back home it goes right to work, like a fleet of army engineers back from R&R. After six straight days receiving mega-doses of chemotherapy, I was transplanted.

During the transplant, I lived in a small air controlled room. Because my immune function was suppressed I was prohibited from touching the floor with bare feet. I couldn't touch anything given to me unless it was wiped down with Clorox or gassed first. If I dropped anything on the floor I had to leave it there until someone could Clorox it for me. Before the transplant, in other treatments, I'd always had brief infusions and then at least a week to recover. Never six days in a row. At the end of the first long, dizzying day of chemotherapy, a montage of darkness and light, nausea and fatigue, I said to Terry, my fiancé, "This has been a long day."

"Sweetheart," she whispered. "It's the fourth day."

It was three weeks before I was capable of thinking clearly again. Really concentrating. I was bald, weak and had rounded prednisone cheeks. A central line ran from my body to a number of IV poles hovering nearby. A urinal was clipped to the side of the bed so I didn't have to get up to pee. A commode, a plastic toilet, sat in the middle of the room and I needed help to get to it. My intestinal track was sloughing off and the inside of my mouth was pot-holed. The distinguishing features of my face had faded beneath prednisone flab. I had no privacy and little control of my environment.

But finally, three weeks after the transplant, my neurons cleared a bit. It was a little cool in the room (baldness makes the world considerably colder) but I felt warm under the blankets. I found a pencil and pad I'd stashed in a bedside table. Words were going to organize my experience and liberate me for a few moments from my struggle. For some people, talking to a friend releases internal demons. For me, writing experiences on paper is like brushing a healing film of perspective on them. I understand the why and how of things after I write them down. I understand what I want, and what I don't want.

I started to write but my unpracticed hand lost the pencil and it rolled, end over end, bouncing onto the floor. I remembered the rules. Once it hit the floor I was forbidden from touching it. I leaned over the bed and stared at the pencil.

I imagined standing in front of St. Peter. Him standing in flowing white robes, surveying a clipboard while saying, "Well, everything looks like it's in order, I just have one last question," and then, "How'd you die?" and me mumbling, "Er, I uh, I, I touched a pencil....." And him slowly shaking his head.

I reached down to get it. As my arm descended, I felt my thigh push against something and then I was wet, and I realized I'd spilled my urinal. The blanket quickly soaked through. Suddenly I was drenched in my own cold fluids and the stench filled the small room. I felt it on my calves and thighs, my loins and belly.

I felt a heavy, suffocating curtain drop on me. In a heartbeat I went from feeling in control and optimistic to thoroughly dehumanized. I sat there for a long time. I could have hit the call light for nursing help but didn't.

I felt frozen. Weary. Beaten down. Tired of fighting.

A surreal image came to mind. I saw myself standing on a ledge, high over a void. It was too deep to see the bottom and I knew it could suck away sound and light. I felt isolated and had no voice. Just a dying, disfigured body.

I didn't move.

Eventually a nurse, Erica, came into the room. She mentioned something about the weather, and then, with a few efficient movements I was clean, had dry warm blankets, a soft touch on the arm, a fresh pencil and my pad...and she was gone.

In the flap of a wing I was brought back. Restored. Energy flooded through me, I felt it in my neck and back, my shoulders and chest. A warmth and presentness.

I didn't have the insight or presence of mind to thank her right then for the touch of her fingers on my arm, her casual matter-of-fact appraisal or the perspective she brought into the room. I wasn't oriented enough to attach words to my experience. But with her practiced, gentle style, movements she made hundreds of times a day--she rehumanized me.

I'm certain that the number of times in my life that I will move between such radical extremes in such a short period will be counted on one hand. But when I went back to thank her, weeks later, she had no memory of the event. She politely acknowledged my thanks and smiled, awkward, looking away, not understanding the passion behind my praise.

To all of my colleagues doing this work, from all of us feeling vulnerable and wordless, thank you. Thank you.

Daniel Shapiro, PhD, is an assistant professor of integrated medicine and psychiatry at the University of Arizona. He was diagnosed in 1987 with Hodgkin's disease and has been disease-free for seven years. A collection of his essays about his experiences as a patient and a psychologist will be published by Harmony and Vintage Books in a book entitled, "Mom's Marijuana," due out in September 2000.



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