Illness and Art
I believe creating and enjoying art in all its forms can help us through illness and other adversity. Filmmaking, photography and writing got me through the death of my father in 1989 from pancreatic cancer, my breast cancer in 2000 and the losses of several friends and relatives over the last three decades. In the sections below, I honor mentors, dear friends and artists who coped with cancer by writing, collaging, photographing, filmmaking, and other modes. Their creativity, joy and resilience inspire me and I hope they do similarly for you.
When I was diagnosed with breast cancer the same month I turned 35, I was in post-production on my first feature film, Searching for Paradise. I received the phone call informing me I had a malignant tumor as I was sitting in the edit suite where my dear friend and editor Beatrice and I were working. I remember taking the subway home that afternoon, Beatrice kindly accompanying me, and thinking to myself how much I wanted to keep living so I could continue making art. In those early weeks after my diagnosis, as I was confronting the loss of my breast, the nauseating chemo, and the sometimes paralyzing fear that the cancer would kill me and I would leave my one-year-old daughter motherless, I remember coming across a magazine interview with film director Jane Campion. In it, she said, “People say making movies isn’t a cure for cancer. I disagree; filmmaking is a cure. It gives you a reason for living. When my son died, on the third day I was devastated, I didn’t know what to do with myself. I went to see Orlando. It was so beautiful. This earth can be transformed. There are moments of extreme wonder…and that’s all worth living for. In the act of making a movie you are involved with those moments, those transformations. For me it’s been a way of life, totally fulfilling.” Campion was possibly being rhetorical, but I would silently repeat her words to myself and returned to working on my film as soon as I could. Through luck and having access to excellent medical care among other privileges, I survived breast cancer, I continue making art, and I try to support others as they make theirs.
Betty Bonatti (1936-1979) was born Elizabeth Starr in Newton, Massachusetts. She attended Tufts College and married Italian oceanographer and geophysicist Enrico Bonatti. They had one daughter and then separated. Betty and her daughter lived in Cambridge, Massachusetts where Betty was heavily involved in the women’s movement. She hosted consciousness-raising meetings at her home with local academics, artists and writers. After she was diagnosed with inflammatory breast cancer in 1975 and given a very poor prognosis, she immersed herself in photography and left a large body of work, including the tiny book she created for Peter Bullough entitled “Peter at the Pacis,” featured in Adventures in Peterland: A Mystery of Art and Love.
River Ginchild Abeje (April 28, 1958- November 7, 2015) grew up in Harlem, NY and trained as a welder before working as a public interest attorney for many years. She was a supervising attorney for the East Bay community Law Center in the Clean Slate practice, a policy specialist for the Office of Citizens Complaints advancing accountability of the S.F. Police Department, and a staff attorney at Legal Services for Prisoners with Children.
I met River at Black Pine Circle School in West Berkeley, a small K-8 school that her child Ross and my two daughters attended. I would see this striking woman with a long mane of dreadlocks pouring out from underneath her helmet, pulling up to the school on her bike with a beaming Ross on a trailer-bike behind her. Ross was a year or two younger than my older daughter so I didn’t get to know River as a parent, and she was aloof when we would cross paths in the school yard.
A couple of years later I heard through the school grapevine that River was going through extensive treatment for breast cancer. One day she approached me outside the school, wearing a wool cap, her hair shorn. She was much thinner. She said she knew I was an artist and had had breast cancer and asked if we could have lunch together sometime; she said she wanted to talk about bringing more creativity and joy into her life. And so began a close friendship that lasted through the end of River’s life in which we created art together: she wrote and performed the rap for her webisode, Una Drops Science, in my web series, Bad Muthaz, and I helped her finish her documentary about her life with cancer, entitled Fired Up: Meteor. We shared our thoughts and feelings around many things, among them breast cancer, mothering our children, and the politics of race in this country. I honor River and the fierce, brilliant art she created by showing some of her collages here.
I’ve known Edith Friedman since our children were attending Martin Luther King Middle School in Berkeley. The first time we spoke it was perhaps the beginning of the fall semester and she was standing with her husband; I think it may have even been the first day of school. She was wearing a close-fitting shirt that didn’t hide that she had a–surgically-rendered–flat chest. I can’t quite believe that I had the gall to approach her and say “I think we have something in common” as a way to begin a conversation about having a mastectomy without reconstruction but I think I was trying to share our loss and applaud her courage in her choice to go flat. She mentions our encounter and her feelings about it in her essay about having chosen bilateral prophylactic mastectomy entitled Choosing by the Book: reading Audre Lorde on the way to the operating room.
The daughter, granddaughter and sister of women who confronted breast cancer in the midst of busy lives, Edith Friedman writes to figure out what happened. Her poems and essays have appeared or are forthcoming in The Ekphrastic Review, Epoch Literary Journal, Nifty Lit, Sisyphus Literary Magazine, SWAMP, Zingara Poetry Review, in the anthology Processing Crisis (Risk Press 2022) and on the website Common Dreams. She has 20+ years’ experience as a trained advocate and fundraiser with organizations serving people with disabilities, health workers, immigrants, migrant farm workers, and low-income families. She lives in Northern California and has a B.A. in English Literature from UC Berkeley, a J.D. from New York University, and an M.F.A. in Poetry from Saint Mary’s College.. For more of her work, visit www.edithfriedman.com
“…The most daring and significant aspect of Maleczech’s career was her dedication to expanding the possibilities for how women can be represented onstage...”
“Ruth Maleczech…was one of the greatest actors of our time. If she had worked primarily in film, Maleczech would be ranked alongside Anna Magnani, Geraldine Page, Jeanne Moreau, Helen Mirren and Judi Dench”
Ruth Maleczech was the co-founder, with Joanne Akalaitis, Philip Glass, Lee Breuer, and David Warrilow, of the great New York avant-garde theater group, Mabou Mines. Ruth died in 2013 of breast cancer, working until her last days on a piece she was acting in and co-directing with her daughter Clove Galilee called Imagining the Imaginary Invalid, based on the similarly-titled Moliere play. I videotaped Ruth and her co-players rehearsing on a sweltering summer afternoon and then accompanied her to her 4th-floor walkup where I recorded her talking about being sick, her difficulty breathing, where she wanted to spend her last days, and her love of life.
I met Ruth in 1990 when I took her acting and directing class at Mabou Mines, after which she invited me to collaborate as a video artist on the play the company was developing: Mother, based on Brecht’s play Mother Courage. A year later I cast Ruth in my NYU graduate thesis film, XXXtasy: Two Days in the Life of a Saint, and later wrote my play The Fairy Queen for her in the role of the schizophrenic, highly intelligent Florence who falls in love with her neighbor, Barbara. Together we developed and workshopped the play at Bard College, The New York Theater Workshop, and in Chicago’s Millenium Park In the Works Series. We had a close friendship, in addition to being collaborators. It is a rare gift to have known Ruth and worked with her; she was a great mentor and friend. I loved her humor, fierceness, and artistic and personal integrity. I also loved the joy and seriousness which she gave to her role as a mother (as well as grandmother) while being equally dedicated to her work; I am intimately familiar with the sacrifices this requires. Referring to her children she said “They have paid dearly. They’ve paid with lack of time, lack of parent input when they need it, not having things that their friends have—objects, you know, property.” And this was all for a type of work that, in her words, “provides no product. There is nothing to sell or own. It is the most transient fleeting experience, and its marks are left only on the grooves of the mind.”
Ruth Maleczech & Paul Kandel perform an excerpt of Mabou Mine’s “Lucia’s Chapters of Coming Forth by Day”.
Ruth Maleczech plays a comic-tragic woman who two ne’er-do-wells beat up in the first minute of my NYU grad thesis film, XXXtasy: two days in the Life of a Saint.
Breast Pocket: On Foregoing Breast Reconstruction
It was summer, 2004. I was visiting my relatives in Italy and had taken a day trip with my husband and two daughters, ages one and five, to a beach where some of the women were topless. I was feeling halfway decent about my postpartum body, seeing there were mature breasts enjoying the sunshine along with youthful breasts. I announced to my husband Michael that I was going to take off my top. His face blanched and he looked panic-stricken. “I don’t think that’s a good idea,” he mumbled. “Why?” I asked. He shrugged and didn’t respond. I guessed, or more likely projected, his answer: why would I want to expose the six-inch scar where my right breast should be? And so I remained covered.
I didn’t think my choice not to have reconstruction after being diagnosed with breast cancer in 2000 was that remarkable. Then a couple of years later while visiting a friend in Cape Cod, she asked me–with a mixture of dread, curiosity, and admiration in her face–why I had chosen not to have reconstruction. I was used to that look. I saw it or thought I saw it at the gym when I was changing or showering. I was acutely aware of the gaze of the women around me. Some shot quick, curious glances at my chest, others studiously avoided it. I wondered what they were thinking. I thought to myself–yes, I went through breast cancer and looked death in the face and I’m not going to disrobe behind a plastic curtain, whether to hide myself or to make you more comfortable. Other times when I was feeling less confident I wished I was like them, with two breasts. And I tried to remember that people have all sorts of demons they’re dealing with, least of which are those visible to strangers in a locker room.
In 2010, an old friend from high school was diagnosed with DCIS (Ductal Carcinoma in Situ or pre-cancer) in both breasts. She opted to have a double mastectomy and immediate breast reconstruction in the same surgery as well as a total hysterectomy. She and I spoke by phone several times during that period when she was not only dealing with her diagnosis but also divorcing her husband of twelve years. After recovering from her surgery she enthused about her new, b-cup breasts and the cleavage she’d never had before and asked me, “why are you holding onto your feminist stance and not getting reconstruction?” Surprised by her reading of my decision, I responded that what I was doing wasn’t a feminist choice, I just didn’t want to put a foreign substance like silicone gel in my body after I went to a lot of trouble getting a foreign entity–a malignant tumor—out of it; it felt counter-intuitive to me. Plus, I didn’t want to undergo more surgery than I had to and risk lymphedema in my right arm. And why increase the already constrictive scar tissue I had on my right chest wall? But she was right; it was a feminist stance.
Of course, these are all personal decisions and vary widely from person to person and circumstance to circumstance. What works for me doesn’t work for someone else and vice versa. What worked for me at the time of my mastectomy may not be what works for me now or in the future. Considering my family history of breast cancer–all four great-grandmothers had it (and survived), both my grandmothers had it (and survived), and two aunts on my father’s side have it, (one died from metastases)–I’ve thought about having a prophylactic or preventive mastectomy on my remaining breast. When my same high school friend, an extremely accomplished woman with both an M.D. and a PhD, warned me about the fallibility of breast cancer screening so I should excise the breast that remained, I booked an appointment with a breast surgeon and plastic surgeon to talk about my options.
The nearly two hours that Dr. Laura Esserman and Dr. Robert Foster at UCSF gave me were incredibly informative. I availed myself of a service they offer where an intern audiotapes the meeting and takes notes. While Drs. Esserman and Foster spoke about survival statistics and the youthful intern took notes, Michael listened grimly and I vented all my cancer anxieties, which are kind of metastatic themselves in that they can spread and grow wildly. What I remember most is the part when the doctors asked me to open my hospital gown so that they could examine my breast and my scar. The doctors cupped my left breast and murmured that it would nicely accommodate the nipple-saving technique developed by Dr. Esserman; a technique where the surgeon scoops out the inside of the breast–”like spooning out the meat of an avocado”–but keeps the skin and nipple intact so that into the pocket thereby created a silicone or saline implant can be placed.
The doctors were remarkably persuasive salespeople. But in fact they weren’t selling anything. They were not telling me to take off my remaining breast–the data show no increase in survival with mastectomy–nor were they telling me to get reconstruction. They were gently placing the onus on me to decide what I wanted to do. This felt similar to when I was first diagnosed and had to decide whether to undergo a lumpectomy, mastectomy, double mastectomy, and/or oophorectomy.
All this decision-making started with a lump I found one evening in November 1999 when Michael and I were visiting friends for dinner in New York City, where we lived at the time. I was lying on a bed in a darkened room off the living room, nursing one-year-old Adriana to sleep. I could hear the voices of Michael and our friends as they talked and laughed. I felt a burning in my right breast, a familiar feeling during that first year when I would fairly regularly get mastitis. I touched the spot where it was stinging and tried to massage it away as I’d learned to do. Deep inside my breast where it hurt I felt a round ball, not the slightly massier feeling a swollen, blocked milk duct can have. I remember the crawl of fear that spread through me. This felt different. I didn’t know what it was, or tried to pretend I didn’t, but I knew I should get it checked out.
When I went to see my ob-gyn doctor that following week he felt the lump and said he wasn’t worried, it was probably related to where I was in my menstrual cycle. He said I should come back in a month and he’d check it again. He told me not to worry, breast cancer doesn’t hurt, it just creeps up on you without any pain. I was reassured but not convinced. I went home and carried on with my life as a new mother and going to the editing suite where my film editor and I were cutting my first feature film. I ignored the little hard ball but inside me it emanated a constant buzz of anxiety.
I did go back in a month and the ob-gyn felt it again. It hadn’t gone down in size or gone away as he’d expected. He still didn’t look worried but he suggested I see a breast surgeon. So I went to three lauded breast surgeons in Manhattan: all gray-haired gentlemen. They palpated my breast and basically patted my head and said, “don’t worry, dearie, you’re too young to have breast cancer, this doesn’t feel cancerous, breast cancers are hard and mobile, not spongy and fixed, and they don’t hurt. I’m not worried, it’s nothing,” they said. I was still not convinced, but I was lulled. They said, it’s the winter holidays, enjoy yourself and forget about this.
So I went with Michael and baby Adriana on a little vacation but did not forget the marble in my breast. When we returned to New York I hurried to yet another breast surgeon, this one a younger guy who didn’t treat me like a dope. He felt the lump, looked worried, and said I needed to have a fine-needle aspiration as soon as possible. Within 24 hours, the doctor was using an ultrasound machine to guide a needle several times into my breast to extract a bunch of cells. I remember going to a café after the procedure and ordering something sugary and soothing. I remember the waiter, a stocky man in his fifties who spoke with an accent and kept coming back to my table with little treats he said I didn’t need to pay for. Later I remember considering maybe that was the spirit of my father, dead ten years prior of pancreatic cancer, coming to comfort me before the shit hit the fan.
I was sitting in the editing suite a few days later, completely engrossed in the scene my editor Beatrice and I were cutting. The phone rang and I picked it up. A man asked, “Is this Myra Paci?” “Yes,” I answered, puzzled as to who this stranger was calling me. “This is Dr. Canon. Myra, I’m sorry to have to tell you the cells in the F.N.A. showed malignancy in your right breast.” I remember crying out in shock. I could not fathom what he was telling me, but deep down I think I’d known I had a problem on my hands otherwise I would not have so doggedly pursued it.
In those first days after the diagnosis I was barely able to think straight. I watched the reactions of my family and friends as through a gray, fogged glass. Their reactions ranged widely and said as much about them as about the situation: my hip, laconic cousin sent me two cases of wine and a few well-chosen CDs of jazz; a friend whose mom had died of breast cancer when she was eighteen would not see or talk to me anymore; my mother, whose best friend had died years before at age forty-two of a particularly virulent type of breast cancer, was a wreck but managed to keep a brave face on; my husband, who had taken a job in San Francisco in December before my January diagnosis, flew back and forth between the coasts, attempting to bring his optimism to the state of affairs; and my fifteen-month-old daughter Adriana knew something was wrong since her mom was pretty much a zombie but fortunately had her father, my mom and a loving babysitter-elder filling in where I was missing.
After many hours of talking to my doctor, to family friends and relatives who were doctors, and doing research on the internet, a course of action was reached. This all happened within two or three days that I remember being feverishly thick with tension. I was going to have a lumpectomy. This was done, and while it was a huge relief that my lymph nodes were found to be negative, the tumor was discovered to be larger than expected. Plus the tumor’s margins were not clean; it had lain dangerously close to my chest wall and there were worries it might have infiltrated the chest muscle and bone. The doctor, an amazing female surgeon named Jean Petrek, wanted to go back in and remove the entire breast to be sure any remaining malignant tissue was removed.
In the minutes before my mastectomy surgery my husband and I slipped into a cramped bathroom off the waiting room, sprinkled a few drops of what a new age store had told us was holy water on my breast, and bid it goodbye. We told my breast how much pleasure it had given both of us and that we were strickened to see it go. Michael seemed even sadder than I and looked pale and dry-lipped. I felt more sure of what I was about to do, or have done to me. I can’t remember if either of us cried–probably, maybe. I think I had the feeling that if I started to cry I might not be able to stop.
In the subsequent days and weeks, when my daughter would ask me where my right breast had gone, I would say, “it got sick and the doctors had to take it off.” I often wondered what happened to that breast, the one Dr. Petrek breezily referred to as “just skin and fat.” I imagine what happened; I’m the daughter of an obstetrical pathologist, after all. The pathologist cut it into fine slivers, dyed and probed it and stared at it under a microscope, and circumscribed any malignancy that was there (they found no more discernible cancer). But when the breast has been turned into so many slices of tissue, what happens to it then? Surely it’s not kept in some freezer for posterity. There wouldn’t be enough freezer space to hold all the cancerous breasts, brains, limbs and organs being surgically removed every day. Speaking of which, I knew, when I was getting infused (a pretty term connoting teas and aromatherapy) with toxic Adriamycin Cytoxan, surrounded by folks of various ages linked to IV bags full of cell-killing chemotherapy, that our cancers were making the hospitals and the pharmaceutical companies a lot of money. And had already made chemical companies poisoning our environment many billions. But that’s a topic for another essay….
The good part of having no breast reconstruction is being able to invent my breasts at will. I can put on whatever size or shape breasts I like depending on my mood. I’ve always enjoyed playing with gender, whether it be cutting my hair close to the scalp and dressing in a 3-piece suit or putting on tall boots, a miniskirt, and a green wig down to my waist. I loved it when, in middle school, I was standing by my locker and a girl visiting the school pointed at me and asked the student guide, “Who’s that? He’s cute!” After my surgery and chemotherapy, when I was bald, skinny and eschewing a breast prosthesis, people in public more than once addressed me with “Sir.” This happened even when I was wearing a sarong, holding my baby daughter in my arms, and thought I looked pretty maternal. That is one of the things I love about living in a city like New York or San Francisco: I can freely inhabit the various thresholds of gender and sexuality that form me.
My identity after my diagnosis and surgery was refreshingly malleable. In some ways I felt as though I’d been reborn. At a family reunion, my schizophrenic cousin sized up my bald head, sunken cheeks, and long flowing Indian garb and intoned “You’ve become very spiritual.” Actually, he wasn’t far off. I’d immersed myself in Buddhist writing, especially Sogyal Rinpoche’s The Tibetan Book of Living and Dying. Reading and listening to this book every night on a walkman helped me face with some degree of peace the possibility that I might die; the cancer the doctors had found in my breast was hormone- negative and in young, pre-menopausal women like me frequently came back within the first three years savagely and with finality. But what my schizophrenic cousin couldn’t see was that I was also very much immersed in my identity as a wife, mother, and filmmaker. My husband and I desperately wanted another child. After a couple of years of anxiously weighing the health risks, and assurances from my oncologists that I had their blessing to get pregnant again, I did.
That was an experience: being pregnant and nursing with one breast. The plaster cast that Michael, toddler Adriana and I made of my swollen belly and one breasted-chest remains an odd, discombobulating artifact of this period. As my breast grew over the course of the pregnancy, I bought increasingly larger sizes of foam prostheses which I would insert into increasingly larger bras. After our second daughter Nora was born and my breast enlarged with milk, I upgraded to a more realistic, silicone gel prosthesis. This one was heavier and more flesh-like and cost a lot more: $400 as opposed to $20. This prosthetic made me feel more “normal” when I was nursing her in public. It wasn’t easy nursing with one breast; the poor mammary never got a rest. I remember a hippy, Berkeley pediatrician telling me with great authority soon after Nora was born that I must nurse the baby for two years. I remember thinking to myself, “Listen lady, I’ll nurse as long as I feel able and I’ll supplement with formula and goat milk when I need to.“ And that’s what I did.
Prosthetic breast stories. I have a lot of them. I later tried donating that silicone prosthesis to The Charlotte Maxwell Clinic, a clinic supporting low-income and underserved women. Not surprisingly, no one wanted a used silicone wedge that had lain against someone else’s skin for months. Sometimes when I’m swimming my prosthesis will escape from my bathing suit top and will float or sink gently away. My great-grandmother used to exit the surf in Southern California where she lived and squeeze both breast prosthetic pads dry, regardless of who happened to be near. A friend of mine, a woman in her early eighties who had a mastectomy years ago and knows I had one too, sat on the beach in Woods Hole one summer afternoon removing shoulder pads from dresses and shirts she didn’t wear anymore. Extending one toward me, she queried, “Want a breast pad?” as though offering me a cookie she’d made.
I remember the deep cavity in my Italian grandmother’s chest from the radical mastectomy she’d gotten in the late 1960s where her surgeons removed not just breast tissue but the muscles of her chest wall; the concavity was often clearly visible when she leaned over to stir a sauce she was cooking in her small kitchen overlooking Assisi. Among the little coterie of breast cancer patients in my cancer support group in Berkeley, we would lift up our shirts and show each other our chests. We’d compare scars, or the size and shape of our remaining breasts, or the quality of the various reconstructions, sometimes checking out the new breasts with our fingers. There was the elderly woman I met at the gym while I was on a artist’s residency at Bard College. In the locker room, I observed two long scars on her naked chest. I approached her, showed her my scar and we began to talk. She was a New York elder and what she said inspired me; “Breasts? I don’t miss ‘em. Mine were big, heavy, always making my shoulders ache. Now I feel light, free.” I can’t forget the artist I saw at my friend and mentor Ruth Maleczech’s play premiere who wore a white button-down shirt open to the waist, revealing a breastless chest; like an Italian Don Juan, except this was a woman, sixty-five and silver-haired, and it happened years before this became commonplace to see among young, transgender men.
For years I didn’t write about having breast cancer or anything surrounding it out of a superstitious fear that if I did the cancer would come back. Like I would be tempting fate to show my face and claim that I had survived. But I figure we’re all going to die and if it does come back at least I’ll have expressed myself. Writing this is a way for me to take off my swimsuit top, so to speak, and expose myself in all my imperfection and vulnerability. My hope is that people accept me in that imperfection and, by extension, accept it in themselves and in those around them.
On a continuum with my superstitious fears was my concern around what my daughters would think about my decision as they got older and their own breasts formed. Would they be embarrassed about me– that is, more embarrassed than teenagers already are about their parents? Would they see my scar and fear for their own lives, fear the genetic liability their forebears and I have passed on to them? Would they be proud of me for following my own beliefs, doing what felt right for me and not choosing reconstruction? By luck and grace, I have survived to help my daughters through this process. When they lament the smallness of their breasts I assure them small breasts are sexy as hell and I share that I felt similarly less-than at their age. And I also assure them that we are so much more than our breasts. I can see in their eyes that they know this is true.