FIRST STEPS TO SURVIVAL
Sharing and Laughter
from Beat Chronic Pain, An Insider’s Guide
by Maren O. Mitchell
Many well-trained and caring people worked for months to save my life and health, and to retrain my body. In all that work and caring there was only one sentence, spoken by one person, seemingly casually, that gave me a clue to my future fight back to living. During the last day of my stay in rehabilitation, I wheeled to the adjoining hospital wing to say goodbye to my neurosurgeon, Dr. Robert H. Wilkins, and his wife, Gloria, who worked with him. With consistent, kind honesty, Gloria had repeatedly helped me by phone in arrangements for my tests, admission, and surgery. Quietly, she said to me: “Don’t expect the world to be the same.” Because I trusted her integrity, I took note, even though at that time I did not understand her meaning. Although simply stated, this gentle advice proved to be profoundly wise. I was and am changed. How I relate to the world, and how the world relates to me, has changed.
From first diagnosis, to surgery, to rehabilitation, to follow-up, no information was offered to me on what to expect from or how to live with constant and permanent pain. The closest professional attempts were two brief, unexpected visits from a young psychiatrist to my room on the rehabilitation ward. In spite of her tired, monotone voice, and her lifeless conversation, her purpose seemed to be to evaluate me for possible depression.
Up to that point I hadn’t had time for any depression. I had been very busy eating and sleeping as much as I could, discovering what my body could no longer do, and trying to find other ways to make my body work.
After chatting casually with the psychiatrist for several minutes, I told her that I was disappointed and concerned that there were no programs available for learning to deal with pain, or for readjusting to an intimate relationship after acquiring a new and stressed body. Why were there no programs? For a moment it seemed that I was conversing with Dr. Sigmund Freud in drag, as she answered my question with a solemnly-rendered question: “Do you have pain during sex?” Hello? I was in rehabilitation following major life-changing surgery; when and how would I have been in a setting to have sex? Did this doctor read the medical history of her patients? Sex or no sex, I was always in pain.
Realizing, I think, the suddenness and oddity of her response to my question, she proceeded to say that “readjustment” films were available for paralytics, that she also was concerned about the lack of information on pain, and that she was working toward obtaining information for patients. In thinking about the psychiatrist after she left, it appeared to me that she herself had needed cheering up! As startling and enlightening as that visit was, the humanity of it gave me a chuckle. This ineffective “counseling” was all that was offered to me during six weeks of rehabilitation in this large and well-respected teaching hospital.
The most useful lesson I have absorbed through all the years since surgery began on the tenth day after surgery. My first day on the rehabilitation ward, with tremendous effort and concentration, another patient maneuvered her wheelchair down the hall to me as I sat in my wheelchair in the doorway of my room. She smiled and introduced herself as Peggy. There was a funny blue turban on her head. Her face and body were lopsided and she was awkward in speech and motion.
My immediate reaction was negative. Who was this person to be so familiar with me? I had come through surgery looking and behaving relatively normal, although I felt intensely abnormal. Within a few days I realized who I was to her. I was a new patient, and like her, my former life was over. I was in physical, emotional, and social pain, away from family and friends, most likely on potent drugs, frightened in new surroundings, and uncertain about beginning work on my recovery. But, following her daily thoughtful example, I began to use one of the basic tools needed for surviving my multiple pains—removing my mind from my pain, and reducing my pain and anxiety, by helping to reduce the pains of others.
I came to see, as days passed, why the variety of patients, amputees, victims of stroke, diseases, and accidents, were comfortable with each other, joking and sharing information. We seemed happier and more alive than most of the staff. No, it was not narcotics. It was fear—fear replaced by humor, by thoughtfulness, by clearer perspectives on what to keep in our lives that we cared about, and what to drop as unimportant. We began to live with discrimination, time well-spent. If I wanted to wheel to the washer and dryer with a lap full of my dirty clothes, I planned ahead. I asked if the machines were available. I carried only the amount I could manage, and only when I was rested. I began to learn to fine tune, to balance decisions and actions. On a moment- to-moment basis we learned to deal with the bad and savor the good.
Some weeks into my rehabilitation program as an inpatient, a nurse told me she was concerned that I laughed too much, and that I shouldn’t because my situation was….. SERIOUS. I mentioned this to a young patient who had been married recently. He was a paraplegic as the result of a car wreck. Laughing, he told me how he also had been cautioned by the hospital staff about too much laughter. Even his wife was puzzled by his light-heartedness. We knew we had to laugh. So much of life had become absurd and unimportant. We shared a good laugh over the stern advice. Now, daily I seek doses of laughter: radio, books, films, conversations, watching our cats and other animals, recalling funny times, and conversations.
Several years later, after describing this patient camaraderie to a friend, she responded: “Oh, yes, it’s that misery loves company.” No. Usually that’s the last thing someone in misery wants, the misery of someone else. Those who have suffered and are suffering severe stress can empathize. The misery is not what’s openly and naturally shared. What is recognized and shared is the alchemy of fear changing into primal courage, expressed as humor, creativity, love, or just plain hard work.
This transformation was new to some of us on the ward, but it is not unique. It is a universal potential utilized to different degrees by all humans. Living in the present, we let go of time, of our yesterdays. The work required by us to slowly relearn what before we had been able to do with speed and ease…..walk, stand, turn over in bed, eat, go to the bathroom, sit up, write, read, bathe, speak, dress, do math…..left no room for anticipation of the next day, the next week. The prospects of our futures could be unbearable, so we sanely, healthily, chose minute by minute, to put all of our living into the present.
Pain, both physical and emotional, removes boundaries between people. Undercurrent racial strain occasionally could be felt and observed between caregivers, and between caregivers and patients. In patient-to-patient relationships racial strain had disappeared completely. I related without judgment toward all my fellow patients. I cared about them. A sample of a possible heaven, we all cared about each other—regardless of race, age, sex or unknown religious choice, economic, or “social” status.
(from Beat Chronic Pain, An Insider’s Guide, Chapter 2, available on Amazon or at http://www.lineofsightpress.com. ISBN: 9780985311902)