For much of the short time she had on Earth, Pamela Summerhayes lived in pain, struggling just to breathe as cystic fibrosis ravaged her lungs. There was always a crisis, a danger. Always, death lurked.
Just before it came for Pam when she was 26, wheezing, her lips blue, she commanded her sister: Write our story.
Now, more than 20 years later, Heather Summerhayes Cariou has kept her promise. In an affecting memoir called Sixtyfive Roses (McArthur & Co., 2006, $29.95), she chronicles her sister's struggle with the most common fatal genetic disease in North American children - Pam was 4 when the family learned the diagnosis; Heather was 6 - and how it marked her and her family.
"Beneath our attempts to be normal, my family was hopelessly frightened, intolerably sad, shamed by our inability to ward off catastrophe no matter how courageous or capable we strove to be, and outraged at our circumstances," she writes in an account so unflinching that it hurts your stomach in places to read it.
Summerhayes Cariou acknowledges that her story lies somewhere between truth and memory. But this is more than just the family's story. Through it, she has found a platform that reaches out to people living in the shadow of illness or loss, limitations or obstacles. And isn't that most of us, at one time or another?
Summerhayes Cariou, a former professional actor and dancer, recalled, for instance, the era when many of her acquaintances in the theatre were losing friends to AIDS. "I felt at that time that many of them came into an understanding of what my whole life had been, with danger and death kind of just looming," she told me.
Sixtyfive Roses, which is how Pam pronounced cystic fibrosis as a small girl, will come out in paperback this summer and could be published later this year in the United States. Summerhayes Cariou, a native of Brantford, Ont., who is married to the actor Len Cariou, has travelled across Canada, speaking to book clubs and service groups about the book and about her sister.
"I try to speak from my heart and my soul," she said. "And the response is that people will come to me with their own stories, will cry openly with me.
"I have received hundreds of emails, from people whose parents have Parkinson's disease or whose spouses have MS, from people who say, 'I have never had disease touch my life, but something in your book moved me to re-examine my relationship with my sister' or 'with parents' or 'with what love means to me.'
"I am no authority, but I have my own experience - and I can pass on the gift of what I have acquired," she said. "We survive by telling each other our stories." And in her book and in her speaking engagements, Summerhayes Cariou, 55, passes on hard-won knowledge from her sister, who she says was, in many ways, a spiritual teacher to her.
She likes to speak about the four pillars of Pam's legacy, as she calls them. "The first is that you can't control life by being afraid of it. So many times, we try to control our lives from a place of fear - and we make our lives smaller as a result. 'What if this happens?' 'What if that happens?' It really doesn't save you from anything."
It doesn't mean you don't feel fear, she said. "You just don't make your decisions and your choices out of that place."
The second pillar comes from a book Pam read: Man's Search for Meaning, by Viktor Frankl, a concentration camp survivor. In it, he observed: "We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread.
"They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."
Summerhayes Cariou said her sister built the last five years of her life on this tenet - that we cannot always control our circumstances, but we can control our response to them. "And it is in that choice that our real power lies."
In her last four days, Pam's life was "diminished to the size of the bed she was in. And yet as far as she could, she exercised choice and remained powerful. Her final words were 'I am not giving up.' "
Which brings Summerhayes Cariou to the third pillar of her sister's legacy - understanding the difference between giving up and surrender. Giving up is an act of anger or despair, she explained, "whereas surrender is an understanding you have given everything you have to give and received everything you have to receive." Surrender means releasing it in love, in compassion, in forgiveness, she said.
The fourth pillar of her sister's legacy is the commitment to not give up. As Summerhayes Cariou writes, "Using your life energy to its fullest capacity, whatever that may be in any given moment - that's what it means not to give up."
May is Cystic Fibrosis Awareness Month; a portion of the proceeds from Sixtyfive Roses will go to the Canadian Cystic Fibrosis Foundation, of which Summerhayes Cariou's father, Doug Summerhayes, is founding president. The author can be contacted at heather@sixtyfiverosesthebook.com.
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