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May 31, 2010

Sixtyfive Roses

May is Cystic Fibrosis Awareness Month, so before the month ends we wanted to highlight an amazing book on the subject called Sixtyfive Roses: A Sister's Memoir by Heather Summerhayes Cariou. If you've read any of our posts about attending the International Women's Writing Guild conference, Heather's name might be familiar to you. If not, just know that we've described her as a "force of nature", and she yelled "Evil Slutopia!" at us across Penn Station in the middle of the morning rush when we showed up for the train to last year's conference. Basically, she's awesome.

Heather's sister Pam had cystic fibrosis, and the book is about Pam's story, Heather's relationship with her sister, and their family's journey.
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.” [SixtyfiveRosesTheBook.com]

This probably goes without saying, but have your tissues handy, especially towards the end. It's such a powerful book. There were times when I wanted to jump into the book and give young Heather a hug, but it helps to know that she got through it all and grew into the rock star that she is today. (Yeah, it totally sounds like we're kissing up right now, but if you know her you get it.)

One of the special things about Sixtyfive Roses is that it tells the story of coping with a serious illness from the perspective of a well sibling, whose needs and voices can often get overlooked in the moment, and an experience that's relevant to a lot of people even if they're not affected by cystic fibrosis specifically. The same goes for her insight into the experience of being a part of a family in crisis. She says at one point that "it's the small things that people in crisis need". It's a great lesson and reminder for everyone about how important and meaningful it is to try to put ignorance or fear or awkwardness aside and just be there for people, even if at first you're not sure exactly what to say or do.

So, this is definitely not just a "cystic fibrosis book". (Although it would still be great if it was.) It's about...well, everything. Life, death, love, family. But we'll let Heather tell you about it in her own words:

Just trust us and read it, you won't regret it. For more information and to get the book:

Sixtyfive Roses Official Website

Sixtyfive Roses: A Sister's Memoir [Amazon]

Sixtyfive Roses: A Sister's Memoir [Powells]

1 comment:

Shen said...

I want to support this, but I'm not sure I or anyone in my immediate family could make it through the book. My cousin Graham had CF, and died at 16 due to medical malpractice during a stay in hospital. It was way too soon, and we all still miss him terribly.

Half-healed wounds for us, but I hope someone out there is moved to support the battle against CF.

Thanks for sharing the roses.