THAT SCARY THING CALLED DEATH and a link to the need to talk about it particularly to children
When I was five, my mother took me by the hand and lead me to the hosptial. “You’ll get some ice cream later,” were the words I remember. When she left I remember feeling abandoned and betrayed. Abandoned because I was in the care of strangers,soon was strapped to a wagon, wheeled into a room full of people with masks, where someone dropped a steel cup on my face and sent me whirling down a dark tunnel. I thought I was dying. I woke with a throat so sore trying to eat my favorite ice cream was torture. My mother insisted on feeding it to me and like all good children I did what pleased her despite the pain.
When I was eleven, I had an emergency appendectomy and at least knew I going to the hospital for surgery, and what that meant.. My memories of my tonsillectomy actually prepared me somewhat as I knew the drill. The main trauma attached to that experience was waking in the middle of the night is a large ward of all adults; the lights were dim, there were moans of pain and some seeming shrouded people clustered around one bed, a bed that was empty the next morning. The figures looked like ghosts and I had a vague feeling I had died but wasn’t in hell as there were no fires and the only burning I felt was where I had been cut.
Clearly, I survived emotionally as well as physically. Some might pull out the canard that what doesn’t kill you strengthens you; those would see these my two hospitalizations as growth experiences. Maybe, but there are easier ways to grow. My mother was only following the advice of the time and every caring adult’s wish to prevent pain, particularly future pain. I am grateful that advice has been thrown into garbage disposal.
Working on both a pediatric service and a radiology service I came to believe that not talking was almost as great a sin as withholding pain medication for fear of addiction. Those I worked with taught me perhaps the single most important lesson of my life trying to help others. It was put into words by Gregory Bateson in his book Steps to the Ecology of the Mind. not an easy read, but containing these words “communication is response.” If I could teach the world one communication skill it would be the meaning of those words. No matter what is said, there is no communication if you don’t attend to the response to your words. The response tells you what the other has heard.
One of the dying children I worked with was five. I visited her every day during her two or three hospital stays and wept when she went home to die. Our visits were short and a set pattern developed on her last visit to the hospital. I always brought paper and crayons so she could draw. During the last visits, she didn’t draw but practiced writing her name. One day she asked for a pencil with an eraser and wrote her name and then erased it.
“Where did my name go?”
I replied, “Away,”
“Into the air?”
“You think so?”
“Yes, but I can bring it back.”
And she would bring it back, erase, bring it it back, erase.
One day, I screwed up my courage and when she erased it, I said, “Your name died,”
She said with an almost radiant smile, “Yes, and now I will bring it back.”
We had communicated. I had finally let her know I heard her. Her parents had been steadfast in not wanting any talk of death. My visits were allowed as long as I did as they wished. Suggesting she might now and be comforted met with anguish and a loud “No.” which was partly why it took me so long to say her name had died. Doing so meant going where here parents didn’t want me to go, and doing so would be seen as unethically by my peers.
Her write and erase and write again was her way of telling me she knew she was dying and that she had found a way to endure. When I used the word she could not say, the radiance of her smile told me I had communicated. She want home the next day. I was glad I had violated my profession’s code of ethics.
If we are honest and listen more than tell, we communicate. We build caring connections. I felt no need to share my knowledge that she would not come back in a bodily form. I also know it would not have changed her ideas and that she would probably not have heard me. Communication is response.
The adults I worked with who could talk about dying directly said the loneliness was the hardest part. Fear of pain and regrets were there also. Many would talk to me, but would or could not talk to loved ones. Mostly the loved ones couldn’t bear to hear the pain the dying person felt and diverted conversations. Sometimes, the dying person feared inflicting pain and stayed away from talk of dying.
Child or adult in all things we mostly hear what we need to hear, what we want to hear , what we can handle, not what is said. I have described else where that my job on the radiology service started with hearing the doctor tell a patient: “We have done all we can, we are discharging you at the end of the week. You need to prepare yourself and your family for the worse.” Some heard “You are dying.” Some heard the opposite. The words were nearly always the same. The doctor would say “Cancer.” Those who didn’t want to hear that would say, “He didn’t say tumor.” Many would hear “All we need to have done and now you can go home.” Some heard what was said, “The cancer was growing and they would most likely die soon, although when was never certain.
It wasn’t my job to challenge, but mainly to listen and respond to what they were saying. That didn’t mean colluding, it meant finding something to say that was honest, but not challenging where they were. The easiest for me where the ones who knew death was probably going to be calling. To those who falsely heard they had been cured, I would say something like “Life, no matter how long we have it, is precious and to be savored.” To those who thought of tumor, not cancer, “Tumors are scary.” To those who saw going home as a sign of hope, “Going home is always good.” But sometimes I felt I had to impose reality. Never worked because what I said as a reality check was heard through their needs, and each person has to find their way through the pain and sorrows of this life.
The doctor I worked with was ahead of his time, as were the experts advising my mother. Things have changed for the better. Still most of us don’t want to cause pain to those we love; the pain of not being heard is one that can and should not be part of a child’s life. Here is an article supporting talking openly and honestly about death and dying.