At this years Read for the Cure event in Toronto, I spoke of the importance of storytelling. I shared a tale about how a story a seamstress once told a doctor in the late 1800’s led to a breakthrough in modern medical research.
I posted a blog entry about my part in that story a few years ago, but I thought I’d repost it now, for those who might be new to my web site.
This was originally posted December 4, 2006
The year is 1895 and Pauline Gross, a young seamstress, is scared. Gross knows nothing about the double helix or the human-genome project—such medical triumphs are far in the future. But she does know about a nasty disease called cancer, and its running through her family. I’m healthy now, she reportedly confides to Dr. Aldred Warthin, a pathologist at the University of Michigan, but I fully expect to die an early death.
At the time, Gross’s prediction (she did indeed die young of cancer) was based solely on observation: family members had succumbed to colon and endometrial cancer; she would, too. Today, more than 100 years later, Gross’s relatives have a much more clinical option: genetic testing. With a simple blood test, they can peer into their own DNA, learning—while still perfectly healthy—whether they carry a hereditary gene mutation that has dogged their family for decades and puts them at serious risk. Ami McKay, 38, whose great-grandmother Tilly was Gross’s sister, decided she wanted to know for her children’s sake. In 2002, the answer came back: positive. It changes who you are, says McKay.
– from Peering into the Future, by Claudia Kalb, Newsweek, December 11, 2006
Tilly in the wedding dress that she and Pauline made.
A few years ago, I wrote and produced a radio documentary for the CBC called Daughter of Family G. The piece documented the path to my decision to undergo genetic testing and it has since re-aired on NPR satellite affiliates in the US.
Claudia Kalb heard the piece and sent me an email to let me know she was working on a year-end article for Newsweek that would deal with the real-life choices surrounding genetic testing. She had a big task ahead, interviewing families with histories of diseases such as colon cancer, Huntingtons, IVA, breast cancer, etc. When she asked me if I’d mind talking to her, I was more than happy to help.
It’s a timely article and I was glad to be able to give her a bit of perspective from my experiences. Speaking with her also reminded me how personal my original documentary was and how much my life has changed since then. I first started working on the doc. in September 2001 and I never could have imagined that I’d have traveled so far in such little time, both physically and emotionally. Long story short, (I’ll leave a link to the doc. at the end of the post if you want the long version…) peering into my DNA did indeed change me.
As you might imagine, it caused me to take an immediate inventory of my health…I became vigilant about making doctors appointments and setting up annual screenings. But the results also infused my life with a curious sort of fearlessness. I watched my mother battle colon cancer (not once, but twice) and wondered where her strength and courage had come from. Finding out that there’s an enormous potential for a battle of my own one day, I decided to tap into that vein of strength sooner rather than later. While I try not to feel that cancer is inevitable, I do feel that putting things off is no longer an option…this goes for everything in my life, especially my art, my writing.
That’s my great-grandmother in her wedding dress – a dress that she and her sister, Pauline fashioned together before Pauline died. They were part of a vibrant, well-known trio that also included another sister who was a milliner. Their skills as seamstresses were often in demand and that’s how Pauline came to know Dr. Aldred Warthin. He respected her artistry and her intelligence, and she felt compelled to confide in him her worries about her family’s medical history and her fate.
Pauline died before she reached the age of 30.
Whenever I think of hesitation, of saving my imagination for another day, I think of Pauline.
Share yourself – your soul, your hopes, your dreams, your stories – it can change lives and possibly the future.
Listen to Daughter of Family G