Here's something about me that you might not know: two years ago, I unexpectedly underwent, over a period of many months, a gruelling series of genetic tests and counselling sessions. This was to see if I carried - as my doctors were very nearly certain that I did - the gene that causes Duchenne's Muscular Dystrophy. The gene that might explain the years of debilitating muscle pain, my unusually weak lungs. The gene that would almost certainly cripple and kill any boy that I might give birth to.
The gene that has crippled my nephew, Tanner. The gene that will kill him.
When the geneticists couldn't find the gene in my DNA, they were surprised. My doctor was surprised. My husband and were relieved. I sobbed from the relief. I sobbed for a whole afternoon, from my relief at having escapeed this burden.
My sister didn't escape. My nephew didn't escape. Tanner has DMD, and he is crippled, and becoming more crippled with every passing wee. He wears leg braces, uses a wheelchair sometimes. Soon he'll have to use it all the time.
There's no cure.
I have been blessed with many privileges. But that privilege doesn't change the fact that a huge part of my life is defined and circumscribed by my nephew's condition. By the fact that he is disabled and dying, by the fact that my sister will lose her son, by the fact that my family will always live in the shadow of this grief.
You didn't know this about me. That's okay. I don't talk about it much. Periodically, I ask visitors to my blog to check out the links for the Canadian Muscular Dystrophy Association, and the MDA in the States, and other organizations. I ask them to maybe think about donating some money, or at least to think about speaking with their children about being nice to children who aren't as able as they are, children who walk funny or talk funny or maybe use braces or wheelchairs. I keep the links on my sidebar. Please, check them out.
I don't talk about it much. It's not easy to talk about it, it takes a lot of emotional energy to talk about. And, too, I think, it takes a lot of emotional energy to read about. It's a downer, I tell myself. Nobody wants to read about this. Sometimes, I think about writing about Tanner, and then I stop myself. Too hard. Too raw. I edit. I pull stories.
And I regret it. Because if there was one point made in the fracas of this past weekend's post mayhem that I can totally get on board with, it's that we need to be talking about and reading about things that make us uncomfortable. We need to be raising awareness about the things that matter to us, and finding out about the things that matter to others. The things that we can't always tell just by looking at them.
You wanna know another reason why I regret pulling my some of my writing impulses? Because any time that I give in to those impulses, my community responds. They do not recoil. They do not click away. They leap in. When I first posted about Tanner, my blog traffic increased to a level that it never had before. When I wrote about my heart breaking over his struggles in school, about his exclusion from play groups and birthday parties, about the teasing that he was being subject to, that traffic exploded. New readers came forward in droves. Dozens of people sent me personal e-mails. Some of those with firsthand experience living or working with disabled and terminally ill children asked me to forward their their e-mail addresses to my sister.
I still get comments on that post. I still get e-mails about it, and the other.
What is easy to forget about the momosphere, amid all of the anxiety about blogrolls and ads and Technorati rankings and celebrity, is that this community is, through and through, a big-hearted community. An empathetic community. A community that is supportive and caring. A community that becomes outraged at hurt and injustice. It is a community, as I say again and again, the best kind of community. Not perfect, not by far, but among the best that I've seen or heard tell of.
You might not know this about me, but I love it.
This post is my contribution to my own writing prompt for Calls to Action. I asked bloggers to write about a cause that is important to them , or their personal experience of trying to make a change or a support a change in the world. It didn't have to be about charitable "causes" - marches and drives and ribbons - (tho' that was welcome) just about the ways and means by which we're all trying to make a difference. It was a prompt to write about going beyond writing. The response has been overwhelming (I'll be posting the links this week) and is evidence, I think, of the big big heart at the heart of this community.
(You can still get involved, if you like. Read more by following the link above. Just write a post and leave a comment for me when you're done, over at HBM.)