December 04, 2006

Daughter of Family G

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 it's 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
Yes, Claudia Kalb, (a medical writer for Newsweek) is quoting me in her article on genetic testing, Peering Into the Future.

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 recently re-aired on NPR satellite affiliates in the US.
Claudia 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 doctor's appointments and setting up annual screenings. But the results also infused my life with a curious sort of fearlessness. I'd watched my mother battle colon cancer (and just this past year I've watched her beat it again), 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.

She 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 - it can change lives and possibly the future.

Read about how I came to write and co-produce Daughter of Family G.
Listen to Daughter of Family G at Soundprint.org.