by Penny Allen

Marguerite Guzmán Bouvard’s book “Healing: A Life with Chronic Illness” (University Press of New England, 2007) has little to do with the kind of healing medical treatments provide. There are plenty of guides on medical therapies for interstitial cystitis but very few on learning how to live with it — until now.

In her memoir of her life with IC, Guzmán Bouvard (a contributing writer to WVFC) starts on a journey so familiar to IC patients — experiencing the pain, limitations and emotional turmoil of a life shattered by illness. But then she charts a course through those rough waters to what she calls “true healing,” a process of taking charge, not just of her medical care, but of her life by learning to live intensely with awareness and maintain a sense of possibility, even when frequency, pain and fatigue are still constants.

She likened the process to the stages of grief, but she did more than pass through them. She learned to use them. In those early stages of denial and anger, she denied her illness enough to travel to Argentina to march with the Mothers of the Plaza de Mayo — the women who defied repression to demand to know what happened to their “disappeared” children.

From them, Guzmán Bouvard learned to use her anger over her pain and limitations, dismissive doctors, and insensitive acquaintances to overcome her fear and get empowered. Writing in journals, she let her pain and rage “stamp around in all their fullness.”

She was lost — her very identity gone when she realized she could no longer be the college professor she was. But she also knew she had to make a map to navigate this frightening and unfamiliar world. She soured on urologists, who could be dismissive and even unthinkingly cruel, inflicting blinding pain by doing cystoscopy and hydrodistention in the office with no anesthesia.

But she also veered away from alternative medicine therapy that she discovered can sometimes seem like attrape-nigaud — a lure for fools. She found out about helpful treatments from the Interstitial Cystitis Association and she found better approaches with doctors who looked at her as a whole person — one who integrated Eastern and Western medicine and another who treated much more than her bladder, ICA Medical Advisory Board member Kristene Whitmore, M.D.

Guzmán Bouvard certainly needed that approach as she had yet another pain condition develop — fibromyalgia. At the same time, she was learning how to piece together a new career in the chaos, writing books and poetry in the limited hours when fatigue and pain receded enough to allow it. She was discovering how to live with pain, relaxing and noticing it as if it were happening to someone else rather than fighting it, something she learned through the meditation that became essential in her life.

She was realizing the power of “reframing,” rethinking experience and expanding perception of it so you can handle it more resourcefully and broadening the choices you believe you have. The “invisible work of sickness,” she found, is not only of the body but also of the heart and spirit. Ultimately, Guzmán Bouvard discovered, even though she needed healing for her physical symptoms, “it was above all that my spirit needed attention.”

Suffering, she realized, “can be the source of profound learning, helping us to develop compassion and understanding and to realize our humanity. […] When we close our hearts and minds to the distress around us, we are locked into an undeveloped version of ourselves, incapable of growth and spiritual awakening.”

That led her to compassionate work large and small. She became an advocate for the ill, lecturing and writing articles for hospice workers. She started a human rights lecture series at Brandeis University and wrote a book about women activists around the world. She stopped to talk to the struggling and the homeless on the street and became a companion to the dying.

Feeding her soul and honoring her body so she could not only ease symptoms but pursue her passions became important tasks. That meant resting when she needs to, learning to ask for help without feeling like a burden, using the time when she does feel well to the fullest, quilting to unleash her creativity and to savor the present moment, playing wildly imaginative dollhouse games with her granddaughter at home instead of taking her to a museum, listening to music, or stripping off her clothes and wading into the ocean just to feel the buoyancy of salt water.

“When I connect deeply with my body and feel its joy,” she wrote, “the sense of utter powerlessness that so often assails me drains away.”

The last chapter of her book is titled “Blessings.” You might think that calling this chronic painful illness a blessing is a little crazy — or a damned lie. But it’s no delusion. It was only by embracing this suffering that Guzmán Bouvard developed the compassion and experienced the great joy that she has. But that state of mind and soul isn’t a given just because you are ill.

As Guzmán Bouvard’s memoir shows, it’s hard work. She never preaches in this book, never says that she knows the path that you should follow, but if you set out on the journey with her in those familiar dark waters of illness, you may see how to plot a course across your own uncharted ocean.

Penny Allen is a freelance medical reporter who also writes for the ICA Update, the quarterly newsletter of the Interstitial Cystitis Association, where this article was first published. “Healing: A Life with Chronic Illness” can be purchased through Amazon or your local bookstore.

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