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I live where the river meets the sea.
I live where the waters of the Hudson end their cold journey to the Atlantic. My windows open to the East, the direction Native Americans believe one must face to ask blessings for a new beginning. The morning sun glances off the water strongly enough to blind you. Late afternoon turns the entire West side of Manhattan to flame. At night the rising moon hangs above the jeweled horizon like the Eye of God. The river flows by me, and flows through me. Memory flows through me.
I live where the river meets the sea, where push comes to shove, where love and anguish, blame and forgiveness, laughter and sorrow converge on the way to understanding.
Labor Day Weekend 1980
My sister tries to breathe. Her lungs make crackling sounds as she takes quick, shallow gasps, her chest heaving in short bursts followed by long drawn out moments of utter stillness, each one longer than the last. My heart jumps before she breathes again. Her lips are blue. They flutter almost imperceptibly beneath the plastic of her oxygen mask. Her eyes are closed.
My own breath comes hard against the pain of losing her. I hold her hand, sitting next to her bed in the room where she once dreamed her teenage dreams. Gray light bleeds through curtains drawn against a late summer storm. We are cocooned by death and the sound of heavy rain.
As children, we loved to watch it storm - the wind flailing the trees, the lightning stabbing the sky, the rain thrashing its way toward earth. We stood together in the open doorway breathing in the dank sweet air, squealing, clutching each other with fear and glee at every clap of thunder. The mixing bowls, pots and pans we placed in the driveway spilled over with soft rainwater. After the storm died, we stood together at the kitchen sink using the rain we'd saved to wash each other's hair.
But that was long ago, when rain was clean and hope was still a blessing.
She stirs, yanking the mask from her face, slowly focusing her eyes.
"Making tea. I'll get her."
We three are alone in the house. My brothers and sister-in-law have not arrived yet. My father is out at the pharmacy picking up morphine to mix with Pam's favorite peach brandy. "Bromptman's Cocktail" it is called, a drink prescribed for death, to ease the pain.
Quickly I fetch my mother from the kitchen, but linger in the hallway while she ministers to Pam. Our baby pictures hang along the wall. There I am, the proud big sister, not quite three, with Pam nestled up beside me, almost a year old. She has just learned to sit. There we are again, our infant brother Gregg propped between us, leaning on my sheltering arm. I am six and Pam is four. She grins triumphantly, having just pulled a bow from her hair. I remember her annoyance at that bow the moment before the shot was taken. I remember her chesty cough, and the way she matter-of-factly explained it to the photographer. “I have Sixtyfive Roses.” She couldn’t pronounce the name of her disease. Cystic Fibrosis.
"Heather," my mother whispers behind me, "Pam wants to see you."
I go in and stand at the foot of her bed. My stomach lurches as I realize that when she speaks, her words will be the last we share. She sits upright, propped by pillows, her fragile arms stretched forward up and over a hospital table to create more space for air in lungs filling relentlessly with blood and mucus, lungs punctured and scarred, frothing, folding in on themselves like wet plastic bags.
She wheezes, the humidity of August a granite slab weighing on her chest. Her words come hard, slowly, one by one, punctuated by long, trembling, tortuous breaths that she draws from the center of the earth. Her hazel eyes bore into me. Her bony fingers, clubbed and purple at the tips, clench the sides of the table as she struggles to speak.
Write…our…story,” she commands.
My sister’s voice is not her own.
“Tell…what we…lived through…together.”
A great energy washes through the room, as if a veil between worlds has been lifted. My skin prickles with the sensation.
“Yes,” I whisper. “I will.”
She reaches out, fiercely grasping my hand. ”PROMISE ME.”
She releases her grip and falls back. A soft roar fills my ears; the hiss of the rain, maybe, the whirr of my own blood racing, the cold hush of swift black water as my sister begins to drown and I am swept alone downstream.
Book Review Journal, by Heather Froeschl
Bonds between sisters can be deeply profound. Life changing, life sustaining relationships with our sisters prove this. Heather Summerhayes Cariou’s memoir, “Sixtyfive Roses” demonstrates the bond of sisterhood in a way that readers will never forget. When your sibling, your best friend, is given months to survive, and you vow to die along with her, life becomes a struggle to live.
When Pam was just four years old, and Heather was six, Pam was diagnosed with Cystic Fibrosis, which Pam pronounced Sixtyfive Roses. It wasn’t a new experience, handling Pam’s illness, since she had been ill all along, but it now had a name, and a death sentence. Heather’s family began to learn everything about Cystic Fibrosis; became founders of the Canadian Cystic Fibrosis Foundation and fought for Pam’s life with every fiber of their being. Heather describes how helpless it felt to lay awake listening to her sister breathing, ready to jump up to get her parents, and how scared she was to wake in the morning to find Pam gone from life. The treatments they were to give Pam at home, the long hospital stays fighting infections, the struggle to pay bills, and the toll on everyone’s lives shook the foundation of their family but at the same time made them all the stronger. Heather’s internal struggle with her feelings and adolescence brought forth an angry young woman; the constant turmoil affected each family member in different ways. The tradition of having tea became a soothing ointment for many moments. Was it enough to soothe their souls?
This memoir is an astounding testament to the strength of family, but also to the reality of illness and a person’s spiritual growth. Witnessing Pam finding her own peace and subsequently Heather’s whole family is the gift Pam left for us all, wrapped up and crafted into “Sixtyfive Roses” by Heather Summerhayes Cariou. This book is about depth of love and dedication, it is about sisterhood and family, it is about Cystic Fibrosis and the research that is being done, it is about one family’s selfless dedication, and it is about Pam. Excellently written, with a foreword by Celine Dion, who has also been touched by Cystic Fibrosis in her family, readers will not be able to put the book down. One can’t help but be moved in reading it.
Storycircle Book Review, by Linda Wisniewski
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 Sixty-five 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 Sixty-five 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 Sixty-five 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.
Long Island Press, Annie Blachley
Heather Summerhayes grew up during the baby boom in southwestern Ontario, Canada, in an idyllic Father Knows Best setting. Her memory began with family-specifically, with her younger sister, Pam. Just 22 months apart, they differed radically: Heather was tall, strong and agile, while Pam was tiny and underweight.
They were inseparable. Jumping on their beds, Pam would tumble onto the floor they called "The Ocean," pretending to drown. Pam would laugh hard and start coughing, until Heather dove down and rescued her.
From early on, their behavior mirrored that game, and even decades later, that dynamic would direct them. During crisis, Heather acted as Pam's rescuer, sacrificing all she could bear, changing forever her view of her once-golden family circle.
With Pam's birth, the family had been joyous. But the baby had clubbed feet. She had a constant, mysterious, wheezing cough. She would eat, but never gain enough weight. The infant was premature, the doctors told her mother, Donna.
"She believed them, in spite of her doubts, because it was 1954, she was only 21, and doctors were gods," writes Heather Summerhayes Cariou in Sixtyfive Roses: A Sister's Memoir. Their doctor diagnosed it as colic, bronchitis or other conditions, telling Pam's mother to keep the child from drinking cow's milk, wearing wool or breathing dust.
Finally, when Pam was 4, skin swollen with red needle marks from rounds of allergy testing, Doug and Donna Summerhayes learned their daughter's correct diagnosis at Toronto's Hospital for Sick Children: cystic fibrosis. As her mother remembers, writes Heather, they said that Pam could die within six months, but would not live past 6: "'There is no treatment,' the doctor-god said. 'There is no cure. All you can do is take her home and make her comfortable.'"
Pam had inherited cystic fibrosis (CF) through a recessive gene. CF children fight off frequent pneumonia, struggle to produce mucus, coughing constantly, and have huge appetites but lose weight (the disease affects the glands that secrete tears, sweat, mucus and saliva).
Donna brought the news to Pam and Heather, in typical pull-no-punches style, telling them that some children die of this sickness, but that everyone has to die sometime. While Pam might always feel sick, they would never give up hope of making her better. Never stop trying.
Little Pam, unable to pronounce the name of the disease, told Heather, "I have Sixtyfive Roses." Heather promised that Pam wouldn't die alone: "I will be your Protector, and we will die together."
While this memoir tells of Pam's stoic and spiritual struggle with terminal illness, it is also an intriguing adventure showing how an ordinary family copes, falling apart and rallying repeatedly, when all hell breaks loose within. The author says today, "I was not interested in writing a 'my sister is an angel' type of story-I was interested in the underbelly." She explains that she wanted this book, her first published work, to read like a novel, not like "typical memoirs."
And while much unfolds tenderly, with some passages almost too painful to read, author Cariou reaches for all the colors this journey has painted inside her, from sorrow-tinged frailty to searing, volcanic anger.
As Cariou observes today, "What's the point of memoir if it's not honest?" Despite living through the devastation of loss, she gives the impression of someone you could sit down and have a beer with. She laughs a lot, and laughs heartily.
She lays bare the family regimen of doctor visits, hospitalizations and home remedies of the '50s. Pam slept inside a tent breathing bitter nebulizer mist, inhaled a solution smelling like old garbage or rotten eggs through a mask three times a day, and endured her physio: She would lie on a board while her mother, father or sister pounded or clapped her back steadily with great force until their palms were red and Pam's skin glowed pink, to dislodge her lungs' mucus. Sometimes Pam had to stop and weep; sometimes she joked through the nearly hour-long ordeal. Afterward, her body racked by coughs, her lips blue, she would bring up a huge glob of mucus; pink or red meant infection or hemorrhage.
Sixtyfive Roses is a loving and raw portrait of a "typical" family's successes and failures. Doug sees the silver lining, despite repeated business catastrophes and financial hardship; his wife Donna weeps, vacuums, makes tea, bakes cookies, polishes floors, works nights as a nurse's aide, then graduates from nursing school. While keeping vigil over Pam, they found the Canadian Cystic Fibrosis Foundation and work with other CF families on support and research.
Through her 30s, Heather Summerhayes Cariou found success on the stage. Today, she calls herself a writer first and actress "on sabbatical." She married actor Len Cariou, who played the title role in Broadway's Sweeney Todd, and later supported her resolve to write drafts of this memoir-over a 20-year period-until she was satisfied. There is talk of her book becoming a film, she says. She credits her success to the support, instruction and encouragement of the International Women's Writing Guild in Manhattan.
Before Pam died at 26, she made her sister promise to write their story. Their mother urged Heather to tell the truth. She has done both. Anyone who has watched a loved one suffer through the ravages of critical disease or who has endured chronic illness will be drawn into this scrutiny of family "normalcy" that finds its resolution in a clear, compassionate voice.
Learn more about Sixtyfive Roses: A Sister's Memoir through www.sixtyfiverosesthebook.com. For more information on cystic fibrosis, contact the Greater New York Chapter of the Cystic Fibrosis Foundation on Long Island at 516-827-1290 or visit www.cff.org/chapters/longisland.
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Reader Reviews for "Sixtyfive Roses: A Sister's Memoir"
|Reviewed by Frances Seymour
|Hi Heather, I know this was a difficult but somewhat healing write for you. I've been writing about my sister as well so I can certainly relate to your pain. When you get a moment, check out my site and, 'Worse Than Dying.' My blogs contain thoughts about her as well. many blessings...Frances|
|Reviewed by John Domino
You said, "Anyone who has watched a loved one suffer through the ravages of critical disease or who has endured chronic illness will be drawn into this scrutiny of family "normalcy" that finds its resolution in a clear, compassionate voice."
My first wife died of cancer. I wrote a story about what we went through with one another. Although it is a short story, it took over 20 years to write. It's call "A Slice of a Short Life." and it's posted on my website.
Writing about your situation had to be very difficult. I praise you for your efforts!
GOD Bless You!