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The writer James Baldwin has said, "For while the tale of how we suffer, and how we are delighted and how we may triumph is never new, it always must be heard. There isn't any other tale to tell. It's the only light we've got in all this darkness." I hope that SIXTYFIVE ROSES: A Sister's Memoir is one of those lights.

Beyond any illness, addiction, or loss there exists the possibility of redemption, the opportunity for a full, rich life that moves beyond mere survival. In the midst of fighting a disease, recovering from dependency, or going forward after tragedy and loss, we honor ourselves and our loved ones by becoming warriors on behalf of our own lives. There are times when grace falls from heaven unbidden, but we must not wait for heaven.  I have found that we must learn to become partners in our own grace.

My sister Pam was diagnosed with Cystic Fibrosis at the age of four and given only a short time to live. I promised to die with her, but as Pam fought the limits of her prognosis, she instead taught me how to live. “Sixtyfive Roses” is the way Pam pronounced the disease that altered the lives of my siblings and parents, who in turn helped alter the community’s response to the disease by founding the Canadian Cystic Fibrosis Foundation. With the help of the Foundation, research, and new treatments, the fight to save Pam lasted for years, ending with her death at the age of 26.  We had to learn to survive the tragedy of my sister's illness, and her loss.

SIXTYFIVE ROSES offers an "unsparing" eyewitness account of the pain, hope and valor of a family in crisis as it falls apart and pulls itself together again and again, only to emerge stronger and more loving. At the heart of the story is the relationship between me and Pam as sisters. As we journey through childhood, adolescence and young adulthood, each of us struggles for autonomy, yet helps the other learn where to find joy and meaning in a world of pain and uncertainty.

This is not just a story about a disease.  SIXTYFIVE ROSES is about fighting for your life and never giving up. It’s about loving fearlessly and the choices we make in the name of love. It’s about the kind of faith, fortitude and forgiveness we tell ourselves we don’t possess, but which is present in all of us. Ultimately, SIXTYFIVE ROSES illuminates what we must all come to understand about the nature of life and death.

There is no happy ending. But there is the day. The sun, the rain. The chance to say I love you. The willingness to forgive. The courage to remember. The opportunity to be kind. The ability to laugh and to be generous. The fact that we can choose our joy in each moment, no matter what. This, in itself, is the miracle.”

McArthur & Company publishers will donate 5% of proceeds from book sales to the Canadian Cystic Fibrosis Foundation, who will in turn split proceeds with the CF Foundation U.S.A.


See my brother Jeff discuss his battle with CF in the video "8 Minutes of Air," written, produced and directed by Brian Summerhayes of Rough Cut Films.

 

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