How do I describe a book about a lovely young woman who dies? Life-affirming, inspiring, courageous, heart-wrenching, joyful. All of these words can be used about Sixtyfive Roses. Pam Summerhayes, diagnosed at the age of four with cystic fibrosis, could not pronounce the name of her disease, and the poignancy of the title brings home the reality of this story: a very young child has a terminal illness, and there is little anyone can do.
Pam's older sister, Heather Summerhayes Cariou, promised her that she would write about what they lived through together. It was a "deathbed promise" that Cariou kept with dignity, grace and beautifully-wrought prose. The book is a long one, but the story drew me in and wouldn't let me go until the very last page. I cared about these people and wanted to know what happened to them.
This is no "look on the bright side" story. Although Pam's family members made a valiant effort to do just that, the author—and sister—does not spare us the unattractive, difficult moments. Cariou puts us in their home on the day Pam is diagnosed and we feel the pain, the shock and the tears. "I have sixty-five roses," Pam whispers, sucking her thumb. From then on, the book reads like a novel. Cariou shows us what it's like to be close to someone with a fatal illness: the sacrifices made, the different way each person handles it, the relationships that are changed forever, the dreams that die.
Pam and Heather's parents coped by starting the Canadian Cystic Fibrosis Foundation, helping many other families by connecting them with treatment options and moral support. Cariou depicts her parents as flawed people who often were unavailable to her because her desperately ill sister needed them more. Sadly, her younger brother was also diagnosed with CF and at forty, is one of the longest living Cystics.
In reading Sixtyfive Roses I learned about the unpleasantness a CF patient faces: the bruised arms from hundreds of intravenous punctures, the pencil-thin arms and legs, and the hacking cough from the mucus in their damaged lungs. But while all this was going on, Pam and Heather had a life together as well. They played and went to school and had their own best friends. Pam went to Crippled Children's Camp, graduated from high school, had a boyfriend or two and struggled through college, even opening a daycare center with three friends before she finally lost her battle at the age of 26.
Cariou, who went to college and became an actress and writer, artfully weaves her own life's trajectory into the tale. These two sisters packed a great deal of living and loving into 26 years, and Sixtyfive Roses is a testament to their courage and love. Yes, Pam's life was too short, but it was also full, and that fullness redeems her story.
The book includes Pam's own notes to herself and to her family. She even made a video to share with people going through the same experience. "It sometimes frightens people or they are not prepared for me to be as prepared for death as I am," she said, "or to accept myself as much as I do...Sometimes I wish they would just sit and talk and they would really learn a lot...Sometimes you have to make yourself, but it does help." Pam's words live on to comfort and encourage others.
Read this book: your life will never be the same.
Heather Summerhayes Cariou was born and raised in Ontario, trained at the National Ballet School of Canada, and was a founding member of the Ontario Youtheatre and the Center for Actor's Study in Toronto. She enjoyed a professional acting career for twenty years across Canada and off-Broadway. She now lives on the Hudson River in New Jersey with a view of New York City and is working on a novel and co-producing the feature film "Make Believe" with her husband, stage and screen actor Len Cariou. Visit her website.
Check out our interview with the author of Sixtyfive Roses.
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