I am participating in the WEGO prompt week, along with other health bloggers from around the world. It’s pretty cool and you can follow it all at WEGO on twitter and on line!
When Lauren was diagnosed on that autumn day almost exactly 14 and a half years ago, one of the first thing my friends said was this:
You can – and will – write about this.
To which I answered, with no hesitation: Never. Never ever. Writing was something I did to earn a living. It was also something I did because I loved it. I could not imagine “using” Lauren’s diabetes to make a buck; nor could I imagine letting this disease, which was taking over my life in so many ways, seep into the vocation I loved.
I’d been a writer for just about as long as I could breath. As a tiny kid (back in the pre “Adam” days when parents would let their kids go to the toy section while they shopped Jordan Marsh), I always chose to go to the book department instead. I think I was seven when I started anticipating the annual announcement of the Caldecott and Newbery Medals for the best children’s books. I actually gave short stories and poems to friends as birthday gifts before I was even 10. (I’m sure they expected a Mr. Potato Head. Hopefully they didn’t mind). In fifth grade, I stood up on career day and announced I’d be a writer for SKI Magazine one day. No lie. Writing was as much a part of me as, me.
Before D, I’d been a newspaper editor, a bureau chief for a large daily paper, a crime reporter, a feature writer, an award winner, a magazine editor, a ski writer, a daily newspaper editorial columnist, an author, and more. I loved my writing career. I cherished it. So I had the fierce desire to protect it from D. My daughter used to protect her left hand baby finger from D. She’s hold it up and smile and say, “See? Diabetes has never touched this.” (And I so felt for the ICU diabetes nurse who quietly checked her one night….on that finger. Lauren snapped out of her sleep and sobbed, “You let it take it. You let it take it.” Yes, my writing was like that baby fingertip.
And yet, diabetes seeped in. The first time I ever remember writing about it was in 1999, the first year we “truly did” the JDRF Walk (it was actually the JDF walk then). New to it all, we were told letters help. Lauren wrote one in her childlike way, and I wrote my own. I poured my soul out, on paper, for the first time. Licking the envelopes (that was a long time ago!) I wondered if it was worth it, letting diabetes touch my writer self. The answer poured into the mailbox: in the end, over $30,000 from friends, all to help find a cure.
The first time I went way public with writing about it was in 2002. It was Lauren’s five-year diaversary and I wrote a long email to then JDRF President and CEO Peter Van Etten, the man leading the charge toward the cure and a man I considered, at this point, a good friend. (When you’re a powder skier, you bond quickly). He, in turn, forwarded it to the entire JDRF universe, staff and volunteer alike. He marked it “must read.” It was my first experience with “Going viral,” and that was before facebook.
And I realized then I could use my writing not to profit personally, but to help in two ways: to build funds for a cure and to help others know they are not alone.
But still. Two things were rock solid: I would never write a book about diabetes. And I would never, ever blog.
Never say never.
The book came via a ski world friend, and my agent Gina. A large publishing company was looking to do a book on raising a child with diabetes. Both felt it had to be me. I said no way. In time they turned me (by helping me see I could send my profits directly to JDRF and by showing me some scary resumes of others being considered. Tree bark cure, anyone?)
So I wrote it. It was like thowing up knowledge. I pounded it out in seven weeks, those 300-plus pages, and to this day it’s a hot seller. I am still a tiny bit embarrassed, but when I meet parents with dog-eared copies who say “You helped me at my darkest time,” or when I see another check being sent to JDRF, I’m okay with it.
And then there was blogging. Why the hell, I thought, would I ever blog? I was, for a long time, a pretty well-known leader in the diabetes volunteer community. But I was from the “pre-on line age.” Time ticked away and suddenly, I was no longer as relevant. And the one thing that keeps me going – by fueling me with new knowledge, contacts and information – is being relevant.
So last spring I caved. And started blogging.
It’s strange how it satisfies me. I’ve written for publications that millions read each day. I’ve had articles nominated for prestigious national awards (and won them). Yet when I see the “stats” tick upward on a particularly relevant post or when I get a note from a D mom like I got yesterday (“It’s like you looked right into my soul,”) I feel relevant. I feel empowered. I feel like I’ve made a difference.
My daughter, too, loves my blog. And with her 500 miles away and pretty much taking care of her own diabetes (I still do the scripts. Master of the customer service rep fight; that would be me), it’s nice for her to read what’s on my mind and for me to read what’s on hers when she responds.
The prompt question today was why do you write about your health, and what I wrote is about why I write about my daughter’s health.
I write because it makes me feel better. I write because it helps others. I write because it connects me to people and issues and programs.
But most of all, I write because it’s who I am. Diabetes has touched that part of me, but for the better. Who knew?