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REVIEW: A sister's painful story
Nancy Schiefer
The London Free Press
January 27, 2007
Sixty-five roses" is how four-year-old Pamela Summerhayes pronounced cystic fibrosis, the fatal disease with which she was diagnosed in 1958.
Doctors gave young Pam six months to six years to live, depending on the care she received and on the severity of her condition. At the time of the diagnosis, her sister Heather was six years old.
The fight to save Pam's life had, however, just begun and when she died, at 26, in 1980, she exacted a promise from her sister. "Write our story," she challenged Heather. "Tell what we lived through together."
The story is compellingly told in Heather Summerhayes Cariou's heart-wrenching memoir, a tribute to her sister and the spirit she displayed in defying her debilitating disease.
Cystic fibrosis is a disease that causes the lungs to fill with mucus. There is little weight gain as the child grows, pneumonia is a constant threat and the pancreas can be affected. The condition is hereditary, caused by the recessive genes of two disease-free carriers.
Cariou's account of living with chronic illness, of dealing with the slings and arrows of adversity, is candid and direct. A brutal verdict such as that visited on Pam is akin, Cariou declares, to a state of war.
"With the advent of my sister's diagnosis, it was as if my family had crossed the waters to a foreign land. We became immigrants in our own lives, leaving behind our identities and relationships as we had known them, losing the future we might otherwise have imagined for ourselves. Swept miserably onto this far shore, ignorant of language of custom, bereft of compass or map, we quickly learned that cystic fibrosis was uncharted and hostile territory."
To cope with the reality of their daughter's illness, Cariou's parents opted for as normal a life as possible in Brantford, declaring "normalcy" the life preserver that would save them all. This became more arduous as the younger of two sons was also stricken with cystic fibrosis.
Although her parents' candour and insistence on a regular family life left Heather floundering emotionally, she soon grasped that reality lay "in Pam's brutal cough in the middle of the night, her bones fleshless beneath powder white skin, her lips and fingernails tinged with blue."
Cariou writes a gripping, often hair-raising account of how her love for her sister collided with her own needs, with her pleas for the attention of distraught parents caught up in unrelenting rounds of treatment and her cry for some semblance of life without the daily intrusion of illness and silent dread. Her parents were so involved with the demands of the disease that they founded (first operating from their kitchen table) the Canadian Cystic Fibrosis Foundation and were awarded an Order of Canada for their groundbreaking work.
Her parents, Cariou recalls, seemed single-minded and young Heather felt she could not compete with her sister for their concern. Of the Summerhayes, she writes: "They were preoccupied with hope and optimism, with structure and routine, and exemplary behaviour in the face of things. They rallied, they organized, they took the blows and turned the other cheek." But they were, she sees with hindsight, "hopelessly frightened and intolerably sad." Although courageous in trying to fend off catastrophe, they remained emotionally raw and outraged by circumstance.
Cariou describes life with a stricken sibling as part compassion for the sufferer and part guilt, the latter "an unspeakable gratitude" for having been spared. Her mixed feelings spawned resentment, temper tantrums, sulks and defiance of the silent God who refused to answer prayers. At other times she felt a fierce protectiveness toward her sister. She gave up a hard-won slot at the National Ballet School in Toronto to remain at home with Pam, and later left a promising acting career to assuage her guilt and to keep her sister company. Her first marriage ended when she allotted too much time tending to the patient.
She notes: "Looking back, I can see that I was not so much angry as I was drowning in grief, shouting out how I too was afraid to die, afraid of the leaves falling, of the stars going out, of the river drying up. Afraid of being left behind. I was already bereft, alone in the cemetery at midnight. Anger grows from the hard kernel at the centre of grief; the feeling of being utterly powerless."
Although Cariou can be overwrought at times, carried away by tugs of memory which leave her emotionally spent, her strength is palpable and impressive. In a beautifully rendered opening chapter she remembers her sister's wish that their story be told. "There are promises that can't be broken. Mustn't be. On pain of death. Or, as I have learned, on pain of life. There are moments that can't be forgotten. Mustn't be. I used to tell myself. Remember everything, because her life will be short."
A former actor and dancer, Heather Summerhayes Cariou has, in this finely felt memoir, shown writing talent as well. She is married to renowned Winnipeg-born actor Len Cariou. They live in Manhattan.
Nancy Schiefer is a London freelance writer.
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