One To One; Guest: Letty Cottin Pogrebin

Hello, I'm Cheryl McCarthy of the City University of New York. Welcome to One to One. Each week we address issues of timely and timeless concern with newsmakers and the journalist to report on them with artists, writers, scientists, educators, social scientists, activists, government and nonprofit leaders. We speak with each one to one. I'm delighted to welcome Lettie Cotton, Pogurban, to the program today. As a co-founder of Ms. Magazine, her name is synonymous with the women's movement. She's also had an impressive career as an editor, writer, activist, and good friend to many. But her considerable energy was put to the test when she was diagnosed with cancer. Now she is sharing how she coped with the disease and what she learned about what she wanted

and didn't want from her friends when she was going through that experience. Her latest book, How to Be a Friend to a Friend Who's Sick, has just been published by public affairs books. Welcome. Thank you. So what made you decide to write this book? Because after I was diagnosed, I chose my nearest and dearest friends to tell. I sent out a goopy email to 12 Uber pals. And the first thing that happened is, though, I had said on my email, please don't tell anybody, not because I'm ashamed, not because it's like the 50s, the C word, but because I don't want to be called by whole hosts of people who are in the outer circles of my friendship. So let's just keep it amongst ourselves. Three days later, I got an email from somebody who wasn't in that inner circle. And then a couple of days later, phone calls and on and on it went and I was before you know it. I was answering questions from people.

I did not consider my confidants. My diagnosis had metastasized. So I didn't like the gossip and I thought to myself, as the weeks went on, their friends who were responding absolutely appropriately and their friends who are just doing something annoying, something that I really don't find helpful to my situation. One friend didn't ever mention it again after that first email. She just would see me and not say a word about it. Another friend kind of disappeared during the time when it looked like it might be bad for me. I said to myself, there's got to be a book that'll help me get a better at friendship and illness. When I was sitting in the waiting room at Memorial Sloan Kettering, I googled it, friendship and illness and I couldn't find a book that would answer my questions and guide me through this. So I decided to write one. Then I said, well, I better report this because I'm a white, Jewish, upper-west side woman and I have a fairly moderate form of cancer that's not representative.

I better go out and talk to a bunch of people. But I had cancer and I didn't have that much energy at first and so I thought I have to travel and go around and then I said to myself, look, right here in this waiting room is this marvelous sampling of people from everywhere, all races, ages, types, cultural backgrounds. And I interviewed about 80 of the people in the waiting room and others, people with all kinds of illnesses, chronic Alzheimer's, illnesses that are invisible to the eye and that's the book. It's my experience and the experience of these 80 people I interviewed. What did they want to talk about most? They wanted to talk most about the things they hated hearing. Lines like God only gives you as much as you can handle or in the case of a grieving person, God must have wanted him or her. The God lines were really annoying to people, even religious people. They said, you know, they don't know what God wants.

I don't want anyone telling bringing God into this. I have my own relationship with God. People who had the invisible illnesses like graves or autoimmune or something would try to explain, you know, I'm really not feeling well, even though I look the same. And their friends would say, well, maybe it's in your head, not helpful. We don't need lines that make us feel worse, lines that kind of diminish us or lines that deny what we're going through. People hated hearing things like, I'm sure you'll get better when some people with chronic illnesses don't get better. In this culture, we think in a very linear way, you know, when you get sick, you get treated, you get better. Doesn't happen always. So you have to adjust to each individual. One thing I learned from your book is that dealing with someone who has a serious illness is very tricky. I mean, I think people are well-meaning for the most part. They want to say something that's comforting and that lets you know that they care.

But it's so easy to say something that pushes a wrong button. I mean, even asking, how are you can convey the wrong message you found? Yes. It isn't that it's the wrong message. It's that it's insensitive to what the sick person has to go through to decide whether or not to answer. How are you as a line we say to everybody? We don't have the luxury of saying, how are you to a sick person? Because it's usually said, how are you with a grab on the arm that somebody called the Irish Wake Shake? You know, how are you makes you feel sick or sound doomed? It sounds as if it's going to be tragic. So for a sick person, how are you as not the normal opening line? It's a line that challenges us to say to ourselves. How much do I tell them? How much do they really want to hear? Do I want to have this person asking me constantly once they know how I am? How are you today?

How are you through days later? Which is what happened with me? I kept getting phone calls with how are you that drove me backwards rather than allowing me to heal and move forward. So what did you say or ask instead? If you could possibly, if you say how are you, just follow it up with, I really want to know so that it stops time for a moment. It doesn't sound like that blow off kind of line we all say to each other, how are you fine? How are you doing great? It stops time and says, I really want to know how you are or just say what you're feeling. I was so sad. How are you feeling better? What are you feeling? What are you feeling? Because again, it changes the tone. It says this is a different kind of question than you normally get. I think what we have to do is start with absolute honesty. That's the thesis of how to be a friend to a friend who's sick. As soon as you can possibly establish a policy of, I'm going to tell you the truth as the patient and you tell me the truth as the friend.

For instance, if I had said at the very beginning when I sent out my email, here's what I have. I don't know if I'm going to have a lump back to me or a mask back to me. I don't know what my treatment is going to be if I'm going to need chemo. But I don't want to have to report in. Please let me send out an email and tell you how I am. Don't keep calling me. Right. It's just going to add to the burdens of what I have to do. That's what you should have done. Yeah. I should have done that. Okay. Should have also said, I'm not somebody who wants visitors. I rather wait till I feel better and then we'll go out to dinner. Please don't drop in. Maybe Alan said 85% of life is just showing up. Not with a sick person. Don't just show up because they may be in extremis. They may be too tired. They may feel obligated to welcome you when they really are nauseous or miserable. So what do you call first or what? Of course you call first. But you also as the friend have the right to be very honest about, I can't come because

I have to help Johnny with his homework. He's got a test tomorrow. Will you forgive me if I come tomorrow? We all feel guilty when we don't show up or when we don't do the old etiquette. But the old etiquette isn't always right for each person. We need to relate to each person according to their condition and our relationship and their personality. Now most people who find out that a friend has cancer or some serious illness wants to do something for them. What guidelines would you offer? And obviously the wrong things you can do and the right things and the helpful things and the non-helpful things. What guidelines would you offer in general as to what to do for a sick friend? Again, we consider the circumstances of that sick friend. If you've gone and visited and you've noticed that their garden is overgrown, you might instead of saying, I'm here, tell me what you'd like me to do. You can say, I noticed that the garden might need a little weeding or your marigolds maybe

need to be deadheaded, you know, the blooms taken off. That's related directly to that person who you know is a gardener and who you know can't leave their bed. You might also do something as basic as consider what you ate for lunch before you go and visit a person in the hospital and sit on the end of their bed. You don't want to breathe on them if you've just had a garlic pizza or even if you just have coffee breath and yet people do it all the time. So it's what you do for the person and it's also what you're conscious of about yourself. Now things that people have done that I admire greatly. Instead of sending one of those fancy fruit baskets that cost $100 when it comes in cellophane and there's nothing in it you want to eat, fancy foods are not something that sick people really crave, you might spend that money to give somebody a house cleaning service for a day because their house probably is kind of understood why you know when somebody gets sick or somebody, a family loses somebody, people assume that they suddenly want to eat fruit or

cheese, a big bag of fruit or cheese, they just ravenous for fruit or cheese. Or they assume that they need yet another bunch of flowers. You get into the person's sick womb and it's full of flowers half of them dead. You're doing that for you, you the friend are saying I'm going to be a good person, I'm going to order a nice bouquet of flowers, you're not doing it for the sick person who maybe really would rather have a nice comfy throw because it's cold in the hospital. You're right, you know, or a pair of pajamas for a guy who's tired of being in his hospital gown. Be sensitive to what you would have wanted, that's such a good rule, you know. And that seems to be the bottom line to sort of to either ask what they want you to do and to be sensitive to what they seem to be communicating to you. Yes, you can pick up on body language. Most people, for example, when they visit, they overstay. They think, you know, I drove in from New Rochelle or Montauk Point and it took me an hour

and 10 minutes, so I'm going to stay an hour and 10 minutes to amortize my trip. That's not appropriate. Most people don't want you to stay for longer than 20 minutes. I interviewed 80 folks who said most people overstay and if they're in pain, 10 minutes or even less. It's not about how much trouble you took to get there and therefore you ought to hang around, but it's about responding to the fallen eyelids, you know, the back, drop back head. This is the one who wants a nap. Right. We're going to take a short break. Then we'll be back with more with Lady Cotton-Poker-Ben, author of How to Be a Friend to a Friend Who's Sick. Ma! Guess what? I went back to college. No. I didn't quit my job. I'm finishing my degree with a CUNY online bachelor's in business. I interact online with real-city university of New York faculty on a schedule that fits my busy life. Ma, you should look who's teaching a CUNY and it all leads to a high quality bachelor of

science degree in business. How I can attend class anywhere, anytime, yes, ma, I'm even at your house right in my trip dinner. The CUNY online baccalaureate, get back to business. Welcome back to One to One. I'm Cheryl McCarthy of the City University of New York and I'm talking with Lady Cotton-Poker-Ben, her latest book, How to Be a Friend to a Friend Who's Sick, has just been published by Public Affairs Books. You write that there is sometimes a shame factor involved in people who are ill. Yes, it's unfortunate, but especially for men, there's an equation of illness with weakness with emasculation. So many men, I discovered, keep their illness a secret from everyone but their wives or partners. They're carrying it all along. I spoke to a memorable man, he was a Hasidic man and I couldn't believe my luck because

I would never get into a close community like the Orthodox Jewish world. And there he was with his black hat and his pants and his long beard. And I said, man, if you, I'm doing a book on friendship and illness and he wouldn't answer me. I said it again, he wouldn't answer me. Finally I started throwing in a few Yiddish words and he, words and finally he answered me and I said, what are your friends are you dealing with? How are they helping you or hurting you and in Judaism we have to visit, it's a commandment. So have they visited you and has this kind of been a support for you and he said, nobody knows. They would gossip about me, it would be the evil tongue. And I said, but really, you can't go through this alone. He said, my wife knows, God knows, that's enough. And I said, there's got to be a real reason for this. And it turned out that he was afraid that if the news of his illness got out, his children would be unmarriageable in this tight knit community.

If you know there's illness in a home or a family, then perhaps it's inherited and then they don't make a match. So he was protecting his children, yelling it alone. Women also are secretive but nowhere near as much. They were so used to confiding in our friends, it sort of comes naturally to us, it's a little harder for men. But occasionally, for example, if women have reproductive problems, if they're struggling to conceive, they may not want to communicate that because it gets complicated, it makes them look like they may be inferred on it, makes their husbands look like they may be impotent. So what do you say to them? I mean, what can you, you don't know about it, so you don't say anything. But once something comes out to that effect, you want to reassure the person that you're a confidant who can keep a secret, that you honor their need for privacy, and that they're the ones who have to set the parameters of the relationship. It all comes back to as honest as you can possibly be with each other, that kind of clears

the field for everything that comes afterward. Then you can say anything, then you can say to my friend, say to your friend, but you just said, hurt me, please don't, please don't put it that way from now on. Now you seem to have had three close friends who got it just right, Joyce, Lynn, and Martine. Tell us briefly what they did that was right. Well, Joyce and Lynn are really close friends of mine, Martine, not so much, but what they did was just walk with me in Central Park and let me spew my fears. Let me ask a million questions. I wanted to know, for instance, from Joyce, am I going to have a scar? If I have a lumpectomy, what will it feel like that kind of operation and how long is the recovery and what will the treatment be? And the most memorable thing that Joyce did, she had been a breast cancer patient, and she had a lumpectomy, and she said, oh, the scar is nothing. And while we were walking through the ramble in Central Park, which is basically empty

on weekdays, she pulled up her shirt and showed me her scar. And it took the fear out for me, oh, yes, it was a scar, but not something shameful or horrible or scary. With Lynn, I was able to talk about, you know, what's the impact on your sex life? How did your children react? She was extremely helpful for it coming, talked about the science of it, my choices. Martine said, if you're going to end up needing a mastectomy, here's what it's like, and she told me exactly what had happened to her, and what it was like living with implants and what implanted shoes. I didn't have to go that route, I didn't have to have chemo, but by the time it got to the point where I was going to be, you know, I was going to be given a prognosis. I had all the information. I felt as if I was totally prepared for whatever was going to happen. Martine also brought you what you say is the best gift for someone who has cancer, which was marijuana, right?

Oh, no, she didn't do it. I wasn't hurt. Somebody else told me, I didn't need marijuana because I wasn't having pain in the game. I didn't have chemo. People who have serious cancers told me that friends who bought them pot gave them the best gift in the world because they gave them their appetite back and it let them sleep. I thought, well, I can't write this, this is again so long, you know, even though these were wonderful friends who took a risk getting grass for their friends. But then it appeared on the op-ed page of The New York Times that one of our New York judges was given marijuana by his friends and he wanted to go public with it because he wanted there to be a law allowing medical marijuana in New York State. It hasn't happened yet. But yes, grass is the best gift for somebody who has been taken chemo and is in pain and can't sleep and can't eat and is throwing up all the time. Right. Pots the thing. Ice cream. Ice cream.

Ice cream is a great gift for anybody except somebody who's, you know, dairy intolerant. But I have two dishes of ice cream on the cover of how to be a friend or a friend who is sick because it connotes friendship that you're sitting down with somebody and having brought them ice cream. You know, especially if you know their favorite flavor, anything that personalizes a gift that says, you know, this is just for you, this isn't anybody's bunch of flowers. Right. This is something I know you want, you need. And a sheath of, or a book of jokes is good too. Yeah. Or I got a joke a day from a friend of mine on the internet. I loved it. Somebody else aggregated a bunch of humor videos of YouTube for me made me laugh. It's a great, you know, it's an old cliche, but it's the best medicine for you when you're scared. There was a period of time when I was waiting for the answer on whether the cancer had spread into the nodes and that would have been a very bad declaration for me to have

to absorb. And during that time, the jokes and the humor were the most helpful at all. You write about dealing with someone who is terminal and you suggested that you let them bring up a discussion of dying of death and dying. Yeah, there are a lot of patients who are in denial. That's their, that's their method of coping with something this terrifying or painful, or this much of an ordeal is to just be in denial and think if the best is going to happen. There are others who want almost compulsively to talk about their death. Because everybody else is in denial. Yeah, because everybody else is in denial. And because they need somebody to kind of unload to and they want to have their last wishes met and they want to say to you, you know, this is what I've always wanted to tell you and they want you to tell them, this is what I've always wanted to tell you.

So you basically have to follow their cues. You follow their cues and once you, you realize that they want to talk to you about death, you have to suppress your own discomfort, you know, one of the reasons we're so awkward with our sick friends and certainly with our dying friends is that we're all vulnerable and this brush is a little close to us for comfort. So we sometimes shut down, there are people who told me their friends disappeared, simply couldn't handle it. I think the hardest situation that people described was when their friends were the parents of a dying child, or a child who had passed away. What in the world do you do in that unthinkable situation? So I have a whole chapter on that because it's- You'd be an example of somebody who dealt with it well. Somebody who dealt with it well, it would be somebody who would be there but not oppressively so, not sort of moving in and taking charge and almost overwhelming the person with care, but someone who's there, almost on that periphery saying, whatever

you need, I'm here. If you don't feel that company right now, you know, I'll be down the block having a coffee or, you know, here's, you know, pressed by cell number. We sponsor to the, whether the person wants company or not, and more importantly than anything, if you're dealing with a friend whose child has died, most people don't mention that child. They feel, if I mention the child, I'll make my friend cry, I'll make my friend feel bad. Well, we don't have the power to not make a friend feel bad by just not mentioning their child like magic. What they actually want is to be sure you remember their child. So it turns out the best thing we can do is offer a memory of that child. When people told me, the people who experienced this told me they were the most grateful. When somebody said, you know, I'll never forget how Johnny loved to zoom on his motorcycle, you know, or how beautiful Janey smile was, or the way that, you know, someone so played

the tuba or helped my child, something specific is a gift to a person who's afraid their child will be forgotten. What did being sick teach you about friendship? For me in particular, as you can see, I'm a big talker, it taught me how to live in the silence of certain friendships that I didn't always have to fill the empty air. And it's hard for me because it's hard for a lot of people. We want to be problem solvers. We like to offer advice. We want to distract people, we want to make them laugh. So occasionally you have somebody who just wants, they want to lie back and they just want to know you there, they want to sit with their hand and yours. I learned to live in the silences, it was hard, but you do things for other people. This isn't about us, this isn't about making yourself feel good as a friend, you know. I offer three names of better doctors, no, people don't need that, they really need just

your openness, your accessibility, your honesty. You say that at the end of the day, only kindness matters, right, I'm reminded of the end of the play wit for the main character who's a former English professor, it was a really tough English professor, but now she's in the last ravages of cancer and she's visited by a former colleague who sits at her bedside reading her to her from her children's book, The Runaway Bunny. Oh yes, love that, love that scene, it's only kindness matters, but I go and step further and I sort of define kindness as empathy plus action, sympathy is suffering with, empathy is identifying with, and if you can identify with the person and say, what would I want if I was in the boat, would it be helpful to me to hear, you know, it could be worse, is that a helpful line, no, I wouldn't want to hear, why would I say it, empathy plus

action, what can you do, is there something you can do, and not just say, what can I do for you, but think of something suggested, what can I do, would it be helpful if I organized a group of your friends to bring casseroles on different days instead of all on the side, the action adds more to the kindness? Well, I enjoy your book and I think it's going to be helpful to a lot of people in dealing with differents who are sick or dying or grieving, or sick at heart or have lost their money in the heart, there's so many chapters here for all kinds of situations. Out of time, but I want to thank Lenny Cotton, for joining us today, how to be a friend to a friend who's sick has just been published by Public Affairs Books. It's an invaluable betaker, one that will inevitably be invaluable for each of us. If there are any people

you'd like to hear from or topics you'd like us to explore, please let us know. You can go to the website at cuny.tv and click on contact us. I look forward to hearing from you.