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|Review by: Grace Tierney||
Just like books, there are certain people who stay with you. Last spring I interviewed a nine-year-old boy about his education and home life for a national survey of children. He sparkled with enthusiasm, like most of the nine-year-olds I contacted for the study. He played a dozen sports, was doing well in school and had loving parents and sisters perfectly normal in fact. Halfway through the interview I had to ask him about what he ate on an average day and he began to tell me about various dietary supplements he had to take because he had cystic fibrosis.
As a mother of two young children myself, his upbeat approach to his illness, the courage of his parents, and his sheer vitality stuck with me over the summer. When I got a chance to review a book about living with the condition, I leapt at the chance to learn more about the disease which I had discovered in the interim is the most common life-threatening inherited disease in Ireland, where I live.
Heather Summerhayes Cariou was six years old when her beloved sister Pam was diagnosed (aged 4) with cystic fibrosis. Her mother was told she had mere months to live. The book includes a heart-rending passage when the girls mother has to tell her daughters that Pams sickness will kill her. How do you explain that to a four year old? And how can a six year old cope with that knowledge?
As Heather writes later in the book: The child who is dying says, in that case, Id better have some fun before I go. The child who sits next to the child who is dying asks, how dare I have fun when my sister is dying?
Her parents, frustrated by the medical professions attitude that the diagnosis was an irrevocable death sentence, founded the Canadian Cystic Fibrosis Foundation. With its help and new treatments and research, the fight to save Pams life lasted until her death, aged 26.
You might assume that such a story would be sad beyond belief and I would recommend that you read this book with tissues to hand, but equally be prepared to laugh out loud at passages which will remind you of your own childhood and siblings. Heather has captured the unique way kids think and behave, oftentimes far more sensibly than the adults around them.
Her honesty in painting a complete picture of the highs and lows of the battle and the reactions it drew from her family and their extended circle is remarkable. Most writers would hide less palatable details, but she bravely tells the whole truth. Hence we read about Heathers marriage struggling to survive her dedication to her sister. She shows relationship with their extended family collapse as they struggle to help Pam when those around them think they should accept her fate. In fact, the only friend of the family who understood their emotions was a neighbor whod survived the Blitz in London during World War II and understands wartime emotions.
She describes the battle against terminal illness perfectly the sense of a private battle waged away from the public eye in a world that ordinary people dont enter and cannot comprehend. Heather has put into words what many cannot, the strangely mingled sensations of grief and anger and despair which flood those watching from the sidelines as someone they love ebbs away from them.
One scene that will stay with me from the book is when she frantically shakes a magic eight ball to get positive answers to her consuming questions would her sister die? and would a cure be found?
She liked to play the jester to the more serious Pam, but as her story progresses, you realize the cost to her naturally upbeat nature. She becomes angry at the attention which is lavished on her ill sister and her quest to gain attention drives her into a stage career. The whole family makes sacrifices to help Pam, who goes on to live a full and varied life within the constraints of her long, regular treatments, illnesses, and hospital stays.
Memoirs usually only interest those who know the author or locality. I live the other side of the world. Ive never been close to a sick child, much less one with cystic fibrosis, but Id recommend this book to anyone whos ever been a sibling, to anyone whos grieving, to any parent, to any one who wants inspiration for following their dreams. This book becomes more than a testament to Pam and her life, it becomes a record of how a family survived its troubles, and every family can do with improving its record in that regard.
As I said at the start, sometimes books and people stay with you. The nine-year-old boy living with the disease still stays with me, but so too do Pam and Heather, whose struggles to find treatments gave that boy a chance.