Chronic illness has been a part of my life for more than thirty years. At midlife, I'm starting to write about my illness experience, trying at last to make some sense of it, delve into what all these years of being ill has meant to me. To help me shape my narrative, I began reading what others have written about their illness experiences.
The most numerous published illness narratives I discovered are those by women with breast cancer. Their writings vary widely in both quality and the writer's approach to her illness. Some focus on her experiences with the health care system while others write about their struggles and triumphs over the disease. There are also self-self books offering ways of coping with the cancer diagnosis, treatment options, and side effects.
"Ordinary Life," by Kathlyn Conway, is an outstanding account of one woman's experience with breast cancer, how she managed her life during a year of treatment, the profound effect her illness had not only on herself but on her family as well.
Conway, a psychotherapist practicing in New York City, learns she has cancer when a routine mammogram shows calcifications in her left breast, which can indicate a tumor. Like most women, she can't believe that she may be among the thousands diagnosed with breast cancer every year. When the diagnosis is confirmed, it's even more difficult for her to accept. Twenty years earlier when she was a college student, Conway was diagnosed with Hodgkin's disease and was treated successfully with radiation. "I've already had my turn with cancer," she says.
Although the tumor is small, Conway has a mastectomy followed by chemotherapy, recommended by her oncologists because of her previous Hodgkin's diagnosis. She is determined to continue with her practice during her treatments and keep the family routine as normal as possible. Before her surgery, she and her husband plan how they will manage their lives and the schedules of their two children—who will take the children to school, how meals will be prepared. Despite these plans, she remains apprehensive. "I tell him that I fear that this treatment will wear us down completely. With appointments, naps, nausea, and early bedtime, I am going to be far less available."
Much of the book describes how she struggles to maintain a semblance of normal work and family life while undergoing enervating, exhausting treatments that will save her life in the long term but make her short-term existence an ordeal of fatigue, weakness and nausea. Between chemotherapy cycles, she also undergoes breast reconstructive surgeries, adding more scars to a body suffering more from the treatment than the disease itself. "I am tired every day in a way that sleep does not alleviate—'chemo-tired,'—as I've come to call it." she writes. She knows from her previous experience with Hodgkin's that she will lose her hair, so she shops early for a wig, wondering how to explain her changed appearance (and her illness) to her patients. She fears her wig will embarrass her children. Sue suffers from nausea, despite a regimen of yet more drugs to alleviate it.
As her body is battered by drugs and surgery, equally under assault are her relationships with her husband and children. "I am subjected to an endless stream of cascading, tumultuous feelings," she writes, describing a getaway weekend with her husband that turns into a disaster. "I want to be close yet I push David away; I love him yet I attack him. I feel distraught beyond words." The couple fights and argues. She screams at her children for minor misbehaviors. "Our daily routine has become truly horrible," she says.
Throughout her illness, her children work hard at consoling me. Molly finds it hard to leave her mother for school or sleepovers. Her mother writes: "How bittersweet it is to know how much she needs and loves me. What if I have to leave her? What if I die?" Her son Zach comforts her (and himself) by believing that everything will be fine, "that I would be get better, that life would return to normal." Even after she recovers, he rarely speaks of the family's year with cancer. "Only rarely do we get a glimpse of his worry." she notes. Throughout the book, Conway insists that cancer has not made her a better person. She resists support groups and is critical of books written by others with breast cancer. "I resent reading glib, cute stories about cancer not being so bad, and I hate hearing that cancer made someone a better person.
It's only making me a worse person." The aftermath of her year with cancer is a body scarred from intravenous lines for chemotherapy administration, a reconstructed breast that is less successful than she had anticipated, and several surgeries. She also suffers from depression, a result of the physical and emotional toll of her ordeal. To find her way out of her depression, she began to write about her illness experience—focusing on her most recent bout with breast cancer but also re-living her time with Hodgkin's—as a way of healing from both her illnesses. The result is her own tale of surviving cancer, written in the present tense, capturing the full impact of what happened to her during that terrible year. It's not, however, the story many people want to hear, she explains: "of lessons learned, of cancer as a transformative experience." She's not proud of the angry, fierce, often whiny, "mean-spirited" person she became during her illness. Her readers see instead a woman who suffered terrible assaults on her body, mind and spirit and who is honest about her very human reactions to her ordeal. It was the very act of writing that helped her recover her sense of self. "The writing that transformed the experience of cancer for me did not result in a book about a transformed person," she states. Underneath the pain, the fear, uncertainty, the stress, and "chemo-fatigue" brought on by her illness and its treatments, Kathlyn Conway continued to be a person, not an illness.
Reading Conway's book will help family members and friends of people with cancer and other long-term illnesses better understand the ordeal that those with life-threatening illnesses experience. For those with such illnesses, stories like Conway's offer validation for the tumult of emotions that are as much a part of their illness experience as the medical treatments and physical symptoms. For me, it's also an inspiration to write my own story of my illness experience, if only for myself.
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