Diagnosed with Cystic Fibrosis at age four and given as little as two months to live, Pam Summerhayes defied the odds and lived until age twenty six. On her death bed, she made her sister Heather promise to write a book about what they had lived through together. It took twenty years for Heather to write the book, sometimes finding it difficult to work through the pain that surfaced as she revisited her past. However, she knew she had to fulfill a promise and as she began to write, it became less and less about fulfilling the promise and more and more about telling the story.
Sixtyfive Roses (young Pamís pronunciation for Cystic Fibrosis) tells a familyís story which is both foreign and familiar to me. I am well aware of how families often walk a fine line between hopefulness and helplessness in a crisis. However, new to me was the understanding of what it meant to live with a child who had a serious, chronic and incurable illness. This story was able to go beyond the details of what the family goes through with a child at risk and tap into the feelings of a family living from moment to moment.
I spoke with Heather Summerhayes Cariou, the author, who confirmed she hopes readers get an idea of what itís like for those families who are dealing with a chronic terminal illness. She also hopes that those whose lives have been touched by illness will be validated, comforted and inspired.
ďI was not interested in writing that my sister was an angel kind of story. I was interested in writing about the underbelly of the experience. And I hope that it comes across in the book that there was great love and great joy and a lot of wonderful stuff, but thatís not really where I was interested in putting the focus. I wanted to focus on the kinds of things that normally donít get discussed.Ē
She continues, noting how at age ten and eleven she went to the funerals of children her own age. ďI found as a well sibling that along with some of the guilt and the anger, a certain kind of invisibility [there is] also a requirement to be preternaturally mature and deal with things most kids donít have to deal with.Ē
This was not a criticism of her upbringing but more of an acknowledgement of a way of life. Her family always believed that the only way to face reality is with the truth. Walking in that truth while relying on the power of the positive is where they gained their strength. As Heather puts it, ď[Ö] itís just choosing life in the midst of death.Ē
She gives credit for her writing career to her sister Pam. She does not believe she would have taken this path had it not been for the promise. She also gives her sister credit for her current outlook on life. One of Pamís lessons to her was that you canít control life by being afraid of it. It comes down to making a choice: faith or fear. These choices are made everyday, sometimes every minute.
ďA lot of people used to say ĎOh, Pam had done so well at accepting her diagnosisí and you know, acceptance was something she worked on every day.Ē
Heather knows no matter what the chronic illness happens to be, it affects everyone in the family. She advises well siblings to search for support inside or outside the family. She believes itís important for these siblings to know their identity and that their feelings are just as important as the sibling at risk. Pam, in the midst of her illness, had known this all along. She had been and continues to be Heatherís inspiration.
ďI eventually took a page out of my sisterís book, pardon the pun,Ē Heather says slightly amused before continuing in earnest, ďShe was really a warrior on behalf on her own life. And I think that again is one of the legacies that she left me with. And I think thatís a message for all of us [Ö] I think everyone should be a warrior on behalf of their own life and maybe on behalf of others too. But it has to start with yourself.
I couldnít agree more.
**Doug and Donna Summerhayes are the founders of the Canadian Cystic Fibrosis Foundation (CCFF).
**A portion of the proceeds from the sale of the book will be donated to CCFF