Despite ‘bikkur cholim,’ patients may want to be alone

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by Fran Kritz

During her recent bout with breast cancer, Letty Cottin Pogrebin, founding member of Ms. Magazine, author and social justice activist, became intrigued by her friends’ and family’s diverse reactions to her and her diagnosis. Some behaved awkwardly, for example, or misinterpreted what she needed. Others were able to sense her needs, or her need for nothing at the time. After speaking with fellow patients at Memorial Sloan-Kettering Cancer Center in New York City and many former patients, Pogrebin gathered her thoughts, and theirs in a collective work of good ideas, insights and opinions and wrote How To Be A Friend to a Friend Who’s Sick, published last month.

Fran Kritz, who is also the president of Bikur Cholim of Greater Washington (http://www.bikurcholimgw.org), recently spoke with Pogrebin about her journey to the book and how to be a friend to a friend who is sick.

WJW: How did you come to write the book?
Pogrebin: I thought I would have cancer because my mother died of cancer, I figured it was in the cards. But I never thought I would have anything to say about it whatsoever except just to live through it. But I couldn’t believe there wasn’t a book about this because it was so crucial to how I felt and how I was treated.

WJW: Are there absolutes? Is there a list of “never say this”? Or can a person rely upon his own resources and think “maybe I’ll know what to say”?
Pogrebin: You know, the bottom line for my book is to try to reach absolute honesty from both sides of the bed, the patient and the friend. But I recognized that we’re all different in not only our response to disease and to illness and to injury and to frailty, but in a capacity to articulate our feelings and our history of encounters with illness to the point where we bring with us the baggage of our past experience. And when we have a friend who meets the same adversity it just triggers those memories.

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There’s no way of saying everyone should say this, no one should ever say that, but what I’ve tried to do in the book is present anecdotes that suggest what annoys people, what makes people feel misunderstood, what hurts people, what offends. And if you read enough of those anecdotes, it triggers, I think, in your own mind a kind of “I’m never going to go there.”

The true test is whether what you have to say is related to what your friend is going through and is adjusted for that friend’s personality and present needs. If you can establish a policy of honesty, it absolutely clears the field. I didn’t want my friends to just show up. I wasn’t always in the mood for visitors. And in the Jewish world that could be very complicated because of the bikkur cholim, the commandment to visit the sick. Well, I say that’s counteracted by the suggestion that all of the Torah could be summarized by saying do not do onto others what you would not want them to do unto you. And when I didn’t want to be visited, I needed my friends to understand that their visit might make them feel good, or virtuous, but it was not what I needed. So you can’t make a flat rule for everyone, but you can learn so much from other people’s experiences and errors, preferences and flubs.

WJW: Do we need to become more comfortable with silence? Do you think that we sometimes need to be quieter rather than noisier when it comes to helping our friends dealing with an illness?
Pogrebin: I think that’s what I learned. For me, that was one of the lessons of being sick. There were moments when really I just – I didn’t want to talk about it. I just wanted to sit there and be with the person. I just wanted to know someone was there, and many people told me this. I didn’t just write this out of my own experience. I have seven chapters that I call interludes, which describe my own feelings and reactions, my illness, my recovery, my epiphanies as it were, as I went through it. But I have 10 chapters that are based on 80 interviews and many people said, I didn’t want all that chatter, I didn’t want someone coming in and trying to cheer me up and blithering about stuff that I didn’t care about when I was in pain or worried and frightened.

But once again, how do we know that? There are also people who love to be distracted, who are grateful for somebody who comes in from the outside full of news. We can’t make a flat rule about that, but what we can agree on is the honesty that allows you to say, “Are you in the mood to talk?” instead of just spewing it out. …

Also, about visits, we should be able to say, if we’re sick, I’m really getting tired, I love that you came, but I’m just a little tired. But sick people don’t because they try to be nice because the visitor took the trouble to come by. But once you say to each other from the get go, you’re going to be honest, they know the patient can say, you know, I’m really feeling nauseous I just don’t want anybody around right now and you the visitor can say, I’d love to come, but I’m worried about my kid’s math exam… .

WJW: How did your Judaism inform your decision to write the book and the book itself? 
Pogrebin: My Judaism and my Jewish values inform everything I do. First of all, I’m an activist. When I get upset about something, I really do something about it. I take seriously the concept that we must participate in repairing the world. That you can’t finish the job, but you have to perform it, you have to get in it. And for me, there was this great blank where people didn’t know what to say. I realized that in the past I haven’t known what to say and I haven’t known what to do. So I had to fix it. I had to make it better, and I just wrote this to bring into the world something that wasn’t there. That’s what writers do.

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