by Studs Terkel
Aside from the Buddhist phrases, do you talk to him too? Like, “Hey, Edward, what to you think of this or that?”
I do, yes. I’ll tell him I came over to be interviewed by you. I sometimes go to ceremonies at the Zen Buddhist temple near the Lincoln Belmont Y. I just started going at the time he died.
As a kid I went to a Presbyterian church. I got so annoyed that my father didn’t insist that I go if I didn’t like it. It was too materialistic. As for the hereafter, I don’t know what it is. It really doesn’t concern me one way or the other.
Since Edward’s gone, I watch TV quite bit. I try to phone people that I haven’t been in touch with recently, just to chat. I haven’t been going to movies. I just don’t feel like going out. I tend to hold on to friends I made years ago.
Do you think of death often, you yourself?
No, not really. I’m probably coasting on the feeling from his absence. I tell Edward everything on my mind for about the last fifty years. When we met in New York, we were know as “Jim and Ed,” we were a couple, Jim and Ed. Now it’s only me.
*1999
The Plague II
Nancy Lanoue
It is early morning at Thousand Waves, a martial arts and self-defense center. With her close-cropped hair, T-shirt, and jeans, she is waiting for me.
I used to be a journalist. I worked at the New York Post. Unfortunately, I was there right before Rupert Murdoch bought the paper and trashed it. I signed up for an eight-week self-defense course because I lived in New York City and I had to go all around the city all hours of the day and night. I didn’t feel safe. I signed up for the class and loved it. I was just fascinated by this whole way of moving. It felt right to me.
Martial arts is so myth-laden. It’s what we see on TV and the movies. My being drawn to martial arts came out of doing antiviolence work in the mid-seventies, when I was just out of college, and we were starting to speak out about rape and sexual assault, and all the kinds of violence done to women. We were creating some institutions of support for that kind of plague, right? I found a way to enact my feminism through the body by believing we could teach women, so that they could possibly stop a rapist, instead of only providing support after the rape. We could actually work on preventing rape by making individual women unable to be raped. That was a very radical idea at the time.
This is a place I opened. In 1985, this karate program began. I had a special mission, I guess: to bring these skills to women who might not have felt comfortable going into a traditional martial arts school dominated by men. I had to close it in 1989 when my partner—my life-partner and my business partner—died of pancreatic cancer. There were fifty karate students at that time, and they kept the program going. They just refused to give up, because it meant something to them. When I came back and was ready to work again, there they were. We expanded the karate school. We’ve gone on for ten more years. I think it’s actually a way for people to practice nonviolence.
Some martial arts have an incredibly beautiful history, like the art of Capoeira, the Afro-Brazilian martial art. It was developed by slaves. In a lot of the movements you don’t use your hands. That’s because their hands were in chains. So there’s a story of liberation associated with a lot of martial traditions that I relate to very much. Then there’s the horrible, Green Beret branch of the family which is something altogether different.
CANCER CAME INTO my life like a bomb. I was in no way prepared for it. Both my parents died of heart disease. I was young, athletic, strong. The thought that I would get cancer was the furthest thing from my mind. I was diagnosed on my thirty-fifth birthday—relatively young for getting breast cancer. Usually, people are diagnosed after age fifty. Even women in their sixties and seventies. But I was diagnosed young. I think my martial arts training helped me have the strong spirit needed to fight that, and to do the treatments and keep open, and talk to people about it and not feel ashamed at having had cancer.
A lot of people feel very isolated with cancer. They don’t dare tell anyone. In particular breast cancer, because it’s so altering to the body. At least in the old days it was. Cancer is a very hidden subject, still. People don’t talk about it. When you get cancer, the first question people ask you is: Do you smoke? What do you eat? All these questions that you think: Ah, I did something wrong to cause me to get cancer. Guilty. Blame the victim. I found this very irritating. Why aren’t people asking what toxic-waste sites were in your neighborhood when you grew up? What chemicals? What companies polluted the rivers around where you lived? What kinds of environmental carcinogens were you exposed to? I believe we have to look at a much bigger picture of cancer than just what this one individual did. I think it’s the luck of the draw which one of us gets cancer. I think we avoid the hard questions.
When I was first diagnosed, I thought it was a death sentence—my very first reaction. I was very low and just paralyzed with fear, fear of death. The first time I confronted my own mortality. When you’re young you don’t think you’re going to die. Death happens to other people. And cancer just . . . [claps] . . . came like that, and said: “You know what? Your life is limited. It’s going to end. Maybe it’s going to end soon.” So that’s where I started—fear of death right in my face. But you can’t stay there, otherwise it’s going to be true. If you don’t climb out of that psychological place, you are gonna die. So you have to go inside yourself and say, “Well, now’s the time to fight.”
The way that I fought is the way we now teach women to fight. We started a group called the Lesbian Community Cancer Project. What we learned from our battles went into helping other women advocate for themselves. My own recovery from cancer inspired me. I think I’m recovered. I’m thirteen years in good health—I’m forty-eight now.
I had never thought of death before. I’d lost both my parents when I was young, but I never believed it would happen to me. Someone gave me a book that influenced me greatly. It was by Audre Lorde, the black lesbian writer who eventually died of breast cancer herself: The Cancer Journals. She spoke about her battle with cancer. It was different than how everybody else spoke about cancer. She talked about it as a battle, and that we are warriors. That you have to be a warrior in how you’re going to fight this plague. Her way of fighting it was not to be invisible, not to hide the fact that you had cancer, not to have reconstructive surgery and pretend you still have a breast when you don’t have one, not even to wear a prosthesis, which suggested that everything is like it was before. But to be a one-breasted warrior. If you have chemo and you’ve lost your hair, be bald so that people can know this happened to you. Then they can connect with you and you won’t feel so alone and isolated. This went against everything everyone else was telling me: “Oh, no one need ever know this happened to you. You can wear this, you can have this surgery, and everything will be the same as it was before . . .” Audre Lorde is saying: It’s never the same as it was before. Now you know that you are mortal and your life will be forever changed by that. And you should be out there and be open. I was very, very moved by her words, and I tried to live that way. So I did my battle with cancer bald and one-breasted. It was a very good experience for me.
I had women tell me that it was more difficult for them to come out as a cancer survivor than as a lesbian. Can you believe that?! It tells you how the dialogue about cancer has been personalized by the powerful forces that don’t want it to become a political discussion. They want us to be thinking: What did I do to cause my cancer? Because that keeps us busy and guilty. We won’t become activists, and we won’t get involved in the struggles that need to happen to really solve the health crises that are created by the way corporations run the world. That’s my personal belief.
This shame or extreme privacy about cancer is something that didn’t feel right to me. I didn’t feel safer that nobody need know about my cancer. I felt safer by sharing my struggles with people. And I got support from that. A year and a half after my own experience with cancer was when my partner Jea
nnette was diagnosed. Hers was a much more grim and hopeless diagnosis. She lived with her cancer for eight months, and she died in the fall of 1989. I was devastated. The love of my life. The woman I started a business with. Her loss, seven and a half years into our relationship, was terrible.
Jeannette was Greek and a big character. At her funeral, my sister gave a speech at my partner’s request. She said, “Jeannette knew she was going to die, she accepted it. But she wanted me to tell you that she was mad as hell to be dying of cancer at age forty-seven. And she wants you all to get involved and get busy and do something about it.” After the funeral, people started calling me up and saying, “What are we going to do about it? How can we start a group? How are we going to act up about cancer?” After Jeannette’s funeral, in Chicago, lesbians started to realize: there’s more than one plague, AIDS. We should be active in the fight against cancer, too. I was depressed and tired and grieving and I didn’t want to start a group. Eventually, enough women contacted me. I said, “OK, if you send out flyers, we can have a meeting at my place.” The notices were just in the gay papers because it was a bunch of lesbian women who were originally concerned. They were a mixed group who showed up in my living room—about thirty-some. They were lesbian women who didn’t feel comfortable going to a traditional, mostly heterosexual support group because they were afraid they might encounter homophobia at a time when they were very vulnerable. There was a straight woman, a very political, activist biologist who herself was a cancer survivor. She was interested in starting a discussion about cancer and the environment and pollution and corporate responsibility. It was a mixed group of all kinds of women.
After it’s all over and the terror is past, you can sometimes speak about what was the gift of that experience. What did I get from it? The common thread that we talk about is having your mortality put up in your face. It sounds trite but it’s true: it makes you appreciate your life in a more tangible and immediate way. You start to reevaluate: Am I doing the work that I’m here to do? If my life ended tomorrow, would I be happy with how I spent today? You ask yourself those questions. Sometimes you make big life changes. Sometimes you go: Yes, I’m doing exactly what I want to be doing. If I have one more day or ten more years, I know I’m doing what I’m supposed to be doing. The experience of confronting your death becomes in a strange way a gift.
I feel great. I feel lucky and happy and great. I still have fear that the cancer will come back, but I’ve learned how to work with that fear. It’s no longer a big, gray cloud that covers my whole life, like it was in the beginning, where every single body reaction, every ache, every pain, you’re sure it’s the cancer coming back. Now I have my checkups. Every year when you go have the mammogram, it’s still scary. But I feel lucky. Not everybody has thirteen years’ good health after breast cancer.
That time, in the late eighties, was when little movements started developing all around the country—women who wanted to become cancer activists. Remember, this was the time before we understood AIDS to be a worldwide epidemic. It was in the context of an epidemic that affected the gay male community. Jackie Winnow, a cancer activist from Oakland, said, “If I got AIDS right now I would have somebody to bring me meals. I would have a buddy who would support me. I would have all these agencies that have been created to help people with AIDS deal with this tragedy. But as a woman with cancer, I don’t have any institutional support.” That’s a big part of it, the issue of gender. Audre Lorde had an experience when she went out for her first checkup after her mastectomy. She dressed up and felt good and went to her oncologist’s office, and the nurse there told her, “The next time you come to the office, I want you to wear your prosthesis”—because it might scare the other women to see this one-breasted woman, one big breast, the other side flat. Audre was so mad at being told that she should wear a prosthesis to hide her experience. She compared it to the Israeli, Moshe Dayan, with his eye patch. She said, “Did anybody ever tell Moshe Dayan that he should have an artificial eye put in because it’s depressing to people to see him with an eye patch? No. That’s a battle wound. He wears that proudly, and it reflects his experience.” She said, “This reflects my experience. And I don’t want anybody to tell me how I should look.”
I had a similar experience. My doctor was a good surgeon, and he meant only the best for me. There is the older surgery of a mastectomy, which is complete removal of the breast. Now there is a newer surgery called a lumpectomy, where they take out the tumor and a margin of tissue around it. It’s for the purpose of conserving the breast. This is a new development in the last fifteen years. The science now suggests that the lumpectomy, if you follow it with six weeks of radiation treatment, offers equivalent protection to the mastectomy by itself. My doctor made the assumption that I would choose the lumpectomy and the radiation over the mastectomy because, as a man, he couldn’t even imagine why a woman might prefer the other choice. But I didn’t want six weeks of radiation therapy. Radiation is dangerous in and of itself—not extremely, but there is a danger associated with it. Every day to go to the hospital for six weeks when I could go back to work? I chose the mastectomy.
He thought I would look better. Even a woman oncologist I visited said, “You should think seriously about reconstructive surgery because later on, you’re gonna not be happy with your disfigurement.” I’m happy that these developments have been created, to make some women with cancer feel better about themselves—I’m happy for them. But I’m worried that so much attention is being paid to the cosmetic issues of cancer, that that’s taking attention and research and time and money away from figuring out what’s causing cancer and how we can deal with it.
I can’t say I’ve overcome my fear of death. I think my practice of martial arts, my meditation practice, my willingness to look at death and see it as an ultimate transformation helps me be ready for it. My fear of death is less than it was before cancer. As for belief in the hereafter, my personal feeling is that the work that we do, the lives that we touch when we’re here, is how we live on. Jeannette, my partner, lives on in my memory, and the things she built, and the ideas she put in my head, and the way she taught me things. Her life goes on because it became a part of me, and I’m passing it on to the next person. So that’s my spirituality. I believe we exist again through our good work and our unique personality, how we are. I don’t believe that I’m going to Heaven, and I don’t believe I’m going to Hell. [Laughs] And I don’t believe I’m going to be reincarnated. My father was a very profound atheist. Hated religion. My mother was a Unitarian. In the South, you had to be Unitarian because it was the only progressive religious institution. Through my martial arts, I’ve been exposed to Buddhism, and I’m drawn to it in some ways. The stoicism associated with it has resonance with me.
I’d like to be remembered as a person who had an optimistic belief in our capacity to grow and change. I believe for myself, and for all the people I come in contact with, that we’re not set in our ways—that we have the capacity to grow and learn and revise ourselves till we’re dead.
Out There
Dr. Gary Slutkin
He served as an intern and resident at San Francisco General Hospital and stayed on to run their TB program, eventually leaving to work in Africa. After a decade overseas, he returned to the United States.
I’m the founder and director of the Chicago Project for Violence Prevention. I’m working full-time on reducing violence. A big piece of this is outreach to the young people to try and change their thinking about violence, and about the availability of alternatives. We’re trying to shift from the idea that violence is cool and glamorous and the way to respond to anything—whether it’s a girlfriend being taken by somebody else, he owes me money, or you looked at me the wrong way. The kids in the inner city with this violence, they have been hurt so much they have had to put a shell around themselves so they don’t feel. They’ve been insulted so many times that they don’t want to feel all these insults. So their soul, their heart ha
s a very, very hard shell around it, and they’re not feeling. We have a hundred and twenty-five clergy who work with us: Jewish, Christian, and Muslim. We’re working with the police department, state’s attorney’s office, U.S. attorney, city government—and we’re working with the neighborhood groups and the residents.
I SPENT THREE YEARS living in Somalia, working with refugees primarily. Then I was seven years working with the World Health Organization and the AIDS epidemic in Uganda and Kenya, Tanzania, Malawi, Congo, Central African Republic. In Somalia, we were working with a population of about a million refugees in forty refugee camps where a lot of death had already occurred. Child death is very, very common in these places.
There was a cholera epidemic where we saw thousands of people die in a period of a week or two weeks. Women wailing and screaming and crying for their relatives. The graves being filled as fast as anyone could dig them. This is now fifteen years ago.
Myself, the other medical people, we cried every night. Then we’d go back to work and cry again. Different teams of volunteers from different countries would come in and we’d struggle with it, like cowboys from abroad. I was there with my ex-wife, who’s an amazing hero, a doctor too. And a number of people from Holland and Switzerland and Finland. And of course, the Somalis themselves were the primary helping group. We hadn’t a clue what to do. I’d never faced a cholera epidemic. We were scrambling to get to phones to call people, to get the U.S. Navy to come in and help. I think we were all psychologically damaged from it. I’ve not really had death in my family. I’ve touched it only as a doctor who has taken care of patients and has seen some horrible things.
America doesn’t really pay attention. Right now we have very, very long life expectancies here, so we’re very, very much disconnected from what is still continuing to happen everywhere else. We’re talking about all these millions of people who have died from AIDS in Africa and still are, but we’re totally disconnected from it. No matter how many times we see it on television, we are unable to respond appropriately.