I can understand why it was many years before a woman as ambitious and accomplished as Marguerite Guzman Bouvard could stand before her colleagues and share with them her long-kept secret: "I am chronically ill." In her book Healing: A Life with Chronic Illness, Bouvard chronicles her own resistance to admitting her daunting physical limitations.
For decades, Bouvard had been absorbed in a busy and very public life of travel, research, teaching and writing—a life she loved, a life that gave her her sense of her successful self, and one she simply refused to surrender. She fought valiantly against the reality of her diminishing energies and capacities. She found her illness demeaning, an embarrassing weakness, a symbol of her failure both as a professional and as a person. As she became less active, less vocal, she felt her colleagues avoiding eye contact and avoiding her altogether. She began to feel invisible, "an unwanted outsider," no longer a part of the illustrious team of academicians that had been her life for so long. As her condition limited her more and more she lived "...in a turbulence of outrage, fear, and sorrow..." over her wildly changing circumstances.
When her illness at last became impossible to ignore, Bouvard spent years going from doctor to doctor, enduring painful procedures. Accurately diagnosed at last, she learned she had a chronic illness called interstitial cystitis, an inflammation and deterioration of the bladder lining that affects not just one area of the body but the body in its entirety. After a time, she would also develop fibromyalgia, again a miserable chronic illness involving muscle pain, severe fatigue and disturbed nightly sleep.
But in spite of her depleted stamina, Bouvard refused to cancel a previously planned arduous journey to Argentina to work with the Mothers of the Plaza de Mayo, whose children had disappeared and/or suffered torture at the hands of the country's brutally suppressive government. From these exceptional and courageous women, Bouvard learned that they assuaged their grief over the loss of their children and the brutal tyranny they lived with daily by banding together, by sharing their stories, by actively rising up against their oppressors, by not keeping silent. In time, she realized that she too would find healing only by speaking the truth of her increasing physical frailty, her acute and unrelenting pain.
The Mothers, who possessed a profound sense of caring for one another and a dedication to righting the senseless and horrific injustices that endangered them daily, became Bouvard's teachers. Her essential values began to change. Things she once considered important lost their significance. She stopped rushing about, stopped feeling the familiar competitive drives she had known all her life. She learned from them how to listen, how to hear and see in depth what was going on around her; she learned to pay attention, to give herself time to take things in and reflect.
However, these changes happened only gradually. She admits that it took her a long time to come to terms with her chronic illness. She writes:
I didn't realize this was the beginning of learning a new culture or that I would have to create a new language that would reflect my reality. Nor was I aware of one of the sources of my deep discomfort: that to become ill in this society means having the body, spirit, and mind severed. How could I speak to the people around me about my fear and anxiety, how could I speak to the self that was changing, when I was unable to find the words and had no frame of reference?
Having found the language to speak her truth, Ms. Bouvard was faced with giving up the certainties of her old career. She needed to learn to navigate her life without the familiar maps and landscapes of previous years. She began to trust that ideas would come in new ways, that her career would follow a different but equally creative path. She wanted to write only about ideas that fired her soul; she wanted to write not with the objectivity of research but as though she was addressing each reader personally.
She became excited as she felt herself and her life changing drastically. She began to keep a journal and as it became filled with her writings, and with cards and messages from friends, she realized she was neither invisible nor alone...no longer "an outsider" but very much a thriving human being, more connected to God and to herself than she had ever been. "Chronic illness," she writes, "has given me the opportunity to reassess my life, to decide on how I will live, what I hope to accomplish and what is important to me."
We all have problems that are difficult to confront, difficult to come to terms with. This is a book that can change the lives of the healthy as well as those struggling with illness. I cannot recommend it highly enough.
Marguerite Guzman Bouvard was born in Trieste, Italy, in 1937. She studied at Harvard University and Boston University and has for many years been Professor of Political Science and Creative Writing at Regis College, Weston, M.A. Since 1991, she has been Resident Scholar with the Women's Studies Research Center at Brandeis University, Waltham, M.A. She is the author of The Path through Grief: A Compassionate Guide and also Revolutionizing Motherhood: The Mothers of the Plaza de Mayo. Her work focusses on bringing to public attention the plight of the poor and disenfranchised.
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