Book aims to teach language of solace

Author advises loved ones to be good listeners, and go easy on the advice

Health & Fitness

May 16, 2004|By Jennifer Lehman | Jennifer Lehman,Sun Staff

A friend's mother dies, a co-worker's son gets injured in a car accident, a neighbor is diagnosed with a serious illness -- sometimes it's hard for friends and family to find the right words to say in the face of such grief and tragedy.

Susan P. Halpern wanted to help with that common problem.

Halpern, a psychotherapist and founder of the New York Cancer Help Program, has written The Etiquette of Illness: What to Say When You Can't Find the Words (Blooms-bury, $17.95). The book addresses issues ranging from open communication with doctors to explaining disease to children.

In 1995, Halpern was diagnosed with low-grade non-Hodgkin's lymphoma -- a cancer that affects the body's immune system. But the idea for her book didn't come until a friend asked if she wanted to talk about a recent CAT scan. Halpern was touched that her friend cared, and impressed by the sincerity of the question.

Through listening to stories and helping people acknowledge their own illnesses, Halpern realized how little effort it took to touch people. Etiquette consists of stories from patients, friends and colleagues that Halpern compiled over the past few years while fighting her own battle with cancer.

The Sun spoke with her recently by phone.

What was your biggest incentive for writing the book?

I began to realize that I did have something to say that really was useful to people. I finished the book after my stem cell transplant, and what kept me going through the end and through the months of waiting to get a publisher was that I really feel that I do have something to offer, and I do want to get that out into the world.

Did you ever think you would be a writer?

I admired writers greatly, and I read a huge amount. I didn't think I would become a writer, but then once I started and I accumulated a fair amount of pages, I knew I wanted to complete it. But it went a step at a time.

What is your definition of "etiquette?"

My definition is a little different from the dictionary. When I use the word, I mean speaking our sincere inner truth from our heart and mind. It's not a set of rules and manners that can be learned and should be performed, but it is the true underlying kindness and engagement with other people in a way that is helpful to both parties. If we took the care to do it well, the world would be a better place.

In the book, you talk about things you should do and say to somebody with an illness. What are the things you shouldn't do?

Do not send get-well cards to someone in their last stage of life. That's very hard to deal with. It seems obvious, but apparently people can't find the right Hallmark card, and they reach for get-well cards.

What they could write instead is, "I hope you have a day of comfort," "Know that I'm thinking of you," "I keep remembering the wonderful times we had together," "I'm so sorry this is happening to you at this time in your life."

Anything that's real and brief -- it doesn't need to be a whole long letter. A sentence will do.

Second, when news comes in, we want to fix it. I want to have the answers, the right acupuncture, the right doctor, the right medicine, whatever it is. That desire needs to be transformed into, "I have an idea that worked for someone, if you ever want to ask me, please feel free."

It shouldn't be, "you have to this" and "you must that" -- that really gets in the way of a person's right to make decisions.

You have been cancer-free for the past year. How did your illness change your perspective on life?

It made me appreciate every day more. It made me appreciate the days I had no discomforts whatsoever, which were many -- I was only sick when I had treatment. It made me appreciate and love my friends a huge amount and not take anybody for granted anymore. There is a whole lot of learning I did around receiving and how much joy it can give the giver to have somebody receive with pleasure.

What do you hope people get out of reading the book?

One friend e-mailed me to say, "I read your book and it was so comforting to me because I just helped my other good friend die. Now I know I really did some things that were wonderful for her."

It's kind of comfort and reassurance and reaffirmation. Sometimes friends have said, "I never would have written so and so, but I read your book and I knew I should send her a card."

So those are the kinds of things I hope will happen -- that people will reach out more and do it with more consciousness and with more assurance, without the anxiety.

What kinds of questions did you ask the people you interviewed for the book?

I would ask them what people would say or have done that was helpful. I would ask them what people said or did that didn't work for them. I would ask them how often they wanted to talk about their illness.

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