Marguerite Bouvard on Chronic Illness, Healing and Gender
Marguerite Bouvard is a true multidisciplinarian. As a poet, nonfiction writer, and political scientist, she’s published 15 books, covering everything from the Madres of the Plaza de Mayo to feminism and aging to the role of prayer in hard times.
Her most recent title is Healing: A Life with Chronic Illness, which is described as a “practical and spiritual guide.” Bouvard focuses on her experience living with interstitial cystitis, among other illnesses.
Bouvard is part of the Women’s Studies Research Center at Brandeis University and is a regular contributor to Women’s Voices for Change, an online community which seeks to transform the way older women fit into our culture.
As a writer, you move among genres—poetry, memoir, political and creative nonfiction, academic writing, and essays. How do you find these mediums influencing each other?
The more subjects I write about, the more they enrich each other. When I wrote Revloutionizing Motherhood: The Mothers of the Plaza de Mayo, I was stuck. There was no methodology to explain the unique political presence of the Madres, women who weren’t feminists yet led a huge movement.
My answer came from poetry. Space is very important in writing poems: the length of a line, where I cut it to emphasize a thought, the space between stanzas if there is to be a space. That led me to write about how the Madres took space in the streets by publishing their own newspaper when the media criticized them, by contacting people from abroad, by their marches. I came up with the concept, “radicalizing space.”
As a poet, I’m interested in language. Here again, the Madres reframed political dialogue, offering a new slogan to counter each of the government’s slogans. When President Raoul Alfonsin used the slogan, “Let there be a healing of the wounds,” the Madres countered, “If the wounds, heal there will be no bleeding. Let the wounds bleed, so there will be no forgetting.”
Some of my poetry is political. I have a book coming out in January 2009, The Unpredictability of Light. A whole section and more of that book are poems critical of the war in Iraq.
One final word on this: Male writers have always been praised for being in more than one field. I have a friend who is a Nobel Prize-winning chemist and a fine poet. The poet e.e. cummings was a physician. Men are praised rather than criticized for venturing in different fields.
You were diagnosed in the late 1980s. Two decades later came Healing. What moved you in that moment to write this book?
I was moved by my life as a woman with disabilities who looks no different from a healthy person, except that I’m thin and, to a few sensitive people, I look fatigued. I became marginalized and invisible.
Since one of the illnesses I suffer from, interstitial cystitis (a neurological and bladder disease), mainly affects women, I was further marginalized. It took three years to get a diagnosis. I was told that I was “emotional.” One physician even suggested that I have my uterus removed.
I started from ground zero to find medical care, to recreate a life. That’s a long, arduous journey. I can write about it now because I traversed it and have what I consider a fulfilling life. It’s different from the lives of the healthy who take so much for granted, like being able to plan a day, walk a mile, sleep at night, live without pain. Now, I count my blessings during my daily meditation. I have a clearer vision of what’s important in life—-the small joys of everyday, especially a phone conversation with my little granddaughters in New York.
There’s also this very important source of joy: being able to give of myself.
Healing is described by your publisher as “a practical and spiritual guide to living well with chronic illness.” Can you expand on that?
What’s practical about the book is showing how one can live mindfully and find ways of making down times easier with pleasures such as sewing (I’m a quilter), reading, music.
Also, the book makes the point of the journey of illness as similar to the stages of grief, and therefore helps people to recognize their feelings, to honor them. The book reminds readers that a person who has a chronic illness needs to be in charge of their medical care, to keep track of treatments and medication.
The book has a section on communication. People don’t know how to speak to the ill, and I give examples of how to converse about a subject that people shy away from.
As for the spiritual section, I wanted to share that the physically vulnerable are spiritually strong. When I became ill, I read in every religion: Catholic and Sufi mystics, the Buddhist bible, Rebbe Nachman of Bratislov. I always meditated, but my meditations became deeper. II began to write articles for a journal, Healing Ministry, for clergy and caregivers of the ill and dying. I must’ve written about a dozen articles as well as a book of poems about illness and a book of prayers, Prayer for Comfort in Difficult Times. Taking on the challenges of daily life with huge physical demands is a work of the spirit.
In a culture where women’s bodies are often used and abused, what are the realities of chronic illness that are unique to the female experience? What do you deal with that a man might not? Or is that a false divide?
That’s not a false divide at all. Women are not taken seriously by many physicians. We’re told that we’re just emotional and frequently brushed aside. My daughter’s best friend has a problem with her uterus. She has so many large fibroids that her stomach bulges. She’s being told by physicians to go on a diet.
Many women with interstitial cystitis have to consult several physicians before getting a diagnosis. And there was a recent article in the New York Times that treated fibromyalgia as an imaginary condition. That too is an illness that affects mainly women.
Because I had bad experiences with physicians, my husband now accompanies me to most appointments dressed in a suit. He’s over six-feet-tall. I’m sorry to say that it makes a tremendous difference.
However, there’s a wonderful organization, the Interstitial Cystitis Association, founded by a woman physician, that helps women to find a physician or deal with IC symptoms. www.ichelp.org. ICA’s newsletters provide resources and the latest studies.
How has chronic illness affected your life as a writer?
My articles in Healing Ministry, my poetry and the book of prayers are results of living with a painful illness. My writing has become much more important to me. My study’s where I write and meditate. It’s a blessing in disguise, because creativity requires solitude, time to think, to daydream.
I telephone and e-mail friends, scholars who come to my home to work on projects, and I have a wonderful husband. Although I’m unable to have a predictable schedule, I focus on writing projects more intensely. I’ll get up at night and scribble notes. I keep pieces of paper in my bedroom, study, and kitchen where I can keep the thread of my current project vibrating.
There’s a theme that connects my different subjects: a thirst for justice, a respect for diversity, and a deep realization of our common humanity.
And as a feminist?
Since my illnesses (I also have fibromyalgia, vulvodynia, chronic fatigue syndrome, osteoperosis) are women’s illnesses, my feminism has become more pronounced.
The medical profession has women in its ranks, but not in top positions. The most outspoken physician on behalf of IC is a woman: Dr. Kristine Whitmore from Drexel University. She’s treats a woman’s entire body. She often finds herself very alone because of her holistic approach.
As well, there’s a wonderful physician at the Women’s Studies Research Center at Brandeis, Dr. Linda Pololi, who has a grant to change the way the medical system works so that it’ll become responsive to women’s needs.
What are your feelings about the feminist movement’s relationship to men and women with disabilities and chronic illnesses?
A number of groups are active on behalf of people with disabilities. I wish, however, that these movements would be incorporated into feminist movements.
I remember wanting to attend an event on international feminism at the Schlesinger Library at Harvard in the early years of my illness and asking just for a more comfortable chair. The library appointed a committee to examine my request and the committee didn’t come up with a finding until the conference was over. Of course the finding was that “it would not be possible.”
On the other hand, the 1995 conference on women’s human rights in Beijing included a section on women with disabilities. That was the genesis of an international network of women with health problems.
As a woman with strong political convictions, you’re one to ask: how does individual healing extend to our broader hope and work for human rights?
There’s a strong connection. When I felt I’d fallen to the very bottom of society as a result of my illness I became more concerned with human rights. My condition gave me a sense of common humanity and how close I was to the homeless, especially because they’re truly invisible, and to people in war-torn countries. I feel this commonality in my gut.
I support a homeless shelter in Maine in a small way. I knit for them, buy small items such as underwear and clothing, send small donations. I helped inner-city youngsters through private high schools. I support children through Plan International. In other words, my activism is on a different scale, one child at a time. I also talk to the ill and the dying by telephone. It makes me feel useful, an antidote to society’s view of the ill as burdens.
It’s hard for people to face the statistics of misery we read about in newspapers. But it’s always possible to help one person.
Your poems and essays are published on Woman’s Voices for Change, an online community which seeks to transform the way older women fit into our culture. What about WVFC resonates with you?
My grandmother lived with us when I was a child. She lived through two world wars, lost her husband on the battlefield. She’d tell stories of how she deposited her garbage in front of Nazi headquarters at 3:00 a.m. when they occupied Trieste. She told me about facing down a German soldier in her perfect German when he tried to requisition her apartment. I’ve grown up with reverence for older women.
Then I listen to Garrison Keillor, whose show I love. But not one show passes without a joke about older women, “a little old granny.” We have a problem with aging in this culture.
As a woman who predated the women’s movement, I find WVFC a marvel. It deals with issues affecting women: health, politics, and the problems women face in daily life. Recently there was an article on vulvodynia, an illness few are aware of.
In a society that ridicules older people, especially women, WVFC honors them. It honors older women poets and fiction writers. One of the directors is a physician. It has broad concerns that speak to women of all walks of life. I’m thrilled to be part of it.
Your writing often focuses on mothers—whether it’s your book on the revolutionary mothers of the Plaza de Mayo or your upcoming book, Mothers In All But Name, which looks at women who’ve raised children that they didn’t give birth to. What draws you to motherhood?
I happen to be maternal. Not all women are maternal. I took in children while my own were growing up. We had a youngster from the inner-city spending vacations with us, a girl whose father left her and whose mother was having a bad time, a young Laotian refugee, a student from the Cameroons. I also took care of my best friend’s children when she was dying of cancer, and afterward until her husband remarried. I could go on and on. I was inspired by my own mother, a single working mom who turned our home into a Noah’s ark. There was always someone staying with us.
I like to write books about phenomena that people tend to overlook, such as the fact that a person can have two or three mothers. I like to widen people’s views on life.
How does your thinking on motherhood relate to your thinking on healing and bodies?
When I was a professor, I spent time in my office dealing with my students’ various problems, and many were in really difficult situations. They couldn’t work to their potential until they felt better about themselves. That’s healing.
I expected the medical profession would be caring. It’s not, except for (Massachusetts General Hospital’s) Dr. Isaac Schiff and a bone endocronologist I see. Dr. Schiff’s extraordinarily caring and always asks questions and shares information with me so that I feel empowered.
Good mothering is empowering although there are so many different ways to be a good mother.
Our society separates mind/body/heart/soul. My book Healing attempts to bring these together. Chronic illness cannot be physically healed, but a person who experiences such an illness can be healed in her or his heart, mind, spirit.
I feel new reverence for bodies, the wounded as well as the healthy.