April 10, 2013
Bikur cholim manners
Every disease is a social disease. When a person is diagnosed, his or her family, friends and community are involved as well. The shock moves through a widening circle, and the questions are always the same: How do we react; how should we react? Will I say the right thing; is there a right thing to say? Should I call, buy a gift? The questions and uncertainties pile up because every serious disease is a social disease.
All of us who have been sick understand one of the powerful motivations behind Letty Cottin Pogrebin’s marvelous new book, “How to Be a Friend to a Friend Who’s Sick”: “I’m also a woman with lots of friends and a writer who became fascinated by the disconnect between how people treat sick people and how sick people wish to be treated.” That same disconnect has struck me repeatedly as a rabbi and a patient. (Full disclosure: I both know Pogrebin and am quoted briefly in the book.) Sometimes it seems there is such a gulf between being sick and being well that the two populations cannot understand one another. With Pogrebin’s book in hand, they now can.
“Here’s what you’re going to learn in these pages,” she announces, “empathy translated into action equals kindness.” If we can understand something of what the sick are experiencing, not their symptoms but their state of being, we might be able better to help them. Part of it is individual: There will be some who long for a room filled with flowers and others who want an austere décor that matches their internal state. Some will wish to learn all about their sickness; others prefer to remain in a fog of unknowing. But many things are shared. It is almost universal, for example, that the sick do not wish to hear how fortunate they are beside the visitor: “Ah, well. You are actually lucky to get cancer at 45. I was only 30 when …” Yes, thank you. I feel much better now.
Pogrebin’s wisdom is a product not only of her research but her illness. Shortly after Yom Kippur in her 70th year she was diagnosed with breast cancer. She gives a brief, poignant account of the degradation, promise and sheer foreignness of the world of cancer treatment, alongside the remarkable cancer community, from health care professionals to support groups. In addition, her celebrity as a pioneering Jewish feminist was noted in the press: “Feminist Activist Stricken With Quintessentially Female Disease.” Pogrebin makes the tart comment: “Just as construction workers get mesothelioma from overexposure to asbestos, it seems entirely possible that I contracted breast cancer from overexposure to women’s troubles.” In the course of her treatment she becomes interested in the endlessly complex problems of those who have to tend to the sick: less the doctors and nurses than the family and friends. They, too, enter an alien territory where it is easy to go wrong in word or deed. Often the burden falls upon the one who is ill to make the visitor comfortable, or even to comfort them. So where is the one who wishes to be a friend to turn for understanding of this experience which, sooner or later, will come to us all?
Pogrebin’s chapters outline the dilemmas. The first is called “I Can’t Believe You Said That!” Ecclesiastes said there was no end to the making of books, but could have as justly insisted there is no end to the making of stupid remarks. Here is a precious example Pogrebin unearths in one of her interviews:
“ ‘How’d it go?’ Pete, one of the men I interviewed in the waiting room, was asked by his friend Fred.
“ ‘Great!’ said Pete. ‘They got it all.’
“ ‘Really? How do they know?’
“If the tone deaf ever need a poster child, Fred’s their guy.”
The point of course is not that Fred is unintelligent or evil. But unprepared people sometimes say what comes into their heads without an awareness of what it might mean. One more example in Pogrebin’s list is this charmer:
“ ‘Wow! A girl in my office just died of that!’ shrieked a friend when Nel was diagnosed with leukemia. Seeing her horrified reaction, Nel’s friend backpedaled. ‘Wait! It wasn’t leukemia! It was lymphoma! I mixed up my Ls.’ ”
It is still legendary in my own family that when my mother suffered a brain aneurysm we were keeping vigil at the hospital (a vigil that turned from hours to months), and the doctor told us the first 24 hours were the most crucial. My parents’ good friends came to sit with us. My father told them that the first 24 hours were the most crucial, but we had at least passed the halfway point. His friend consulted his watch and said, “Well, not quite.”
My brothers and I looked at each other, incredulous. But when the need to say something is urgent, what comes out of our mouths is often not what we would wish. The Spanish proverb puts it crisply: A fly (or a foot, as Pogrebin has it) does not enter a closed mouth.
What about visiting? Some people are less desirous of visits than others. (When I have been in the hospital, both for a brain tumor and lymphoma, I went under an assumed name to keep visits to those closest to me. Other patients welcome a steady stream.) We need to reach a point, Pogrebin writes, when people can forthrightly speak the following sentences:
1. “Tell me what’s helpful and what’s not.”
2. “Tell me if you want to be alone and when you want company.”
3. “Tell me what to bring and when to leave.”
But she acknowledges we are not there yet. So we play a guessing game on both sides of the sickness divide. She records seven lines sick people do actually wish to hear:
“I’m so sorry this happened to you.”
“Tell me how I can help.”
“I’m here if you want to talk.”
“Just give me my marching orders.”
“That sounds awful; I can’t even imagine the pain.”
“I’m bringing dinner.”
“You must be desperate for some quiet time. I’ll take your kids on Saturday.”
These are specific offers and steps that express understanding and action. From the time when I was undergoing chemo, I will always remember how a group of people, knowing I was vegetarian, realized that cooking for someone is complicated: It involves getting dishes back, worrying if you like the food (sometimes lying that you did), etc. So they gave a credit card to two vegetarian restaurants and told me to order whatever I wanted. The delivery guy didn’t care if I liked the food or not. It was considerate, it was generous, and I will always be grateful.
The dilemmas ramify. How does one deal with dementia, which presents a whole new set of challenges and pain? Pogrebin has some compassionate, helpful advice for those who watch their relatives slipping away and, even more, for those who find themselves slipping away. Preserve what you can. Express as much as can be expressed while the sun is lowering but not yet gone.
Although Job’s friends later go awry, in the biblical book of Job, for the first seven days of his loss they merely sit silently and weep with him. Such instinctive empathy, so rare in the days of professionalization and protocols, is what Pogrebin helps restore. She teaches, but like the best teachers, seems to remind us of what we already know but have not articulated until we saw it on the page.
There are so many questions that suddenly plague us when we are ill: money, shame, the loss of the integrity of our bodies. The very experience of being in the hospital is jarring to the psyche. I remember days when all I wanted in the world was to pluck the IV from my arm. Pogrebin understands. For the sufferer and those who love her, she helps.
This is a wise book. It is a book we need.
Letty Cottin Pogrebin will be in conversation with actor Leonard Nimoy at Sinai Temple on April 24 at 7:30 p.m. Tickets are free, but reservations are required: Call (310) 481-3243