Wednesday, January 28, 2009

I am the one who.... [1]

I was at a writer's meeting this past weekend where the theme was "Words into Film." It's not that I intend to write screenplays, but I've found that I get as much, and sometimes more, out of attending events that aren't specific to the genres in which I do write. (Besides, I'm on the board of the sponsoring organization.)

One of the presenters has made a documentary film that is well-received around Vermont. Shout it Out shows teens in their own voices (think High School Musical in the real world) and one of the prompts the producer/director used to develop the project was "I am the one who."

If I were a teen filling this one out, it would read like this:

I am the one who is different. I am smart and I like to learn things. I am tall and thin and I don't have big boobs, but I do have big feet. I will never have a boyfriend. I am clumsy. I don't like sports and will do anything I can to get out of phys. ed. I like singing in Chorus and working backstage for theater.

Being that teen made me a writer. Even before I knew I had Marfan's, the syndrome shaped my life by making my difference visible. Being the tallest girl in class by a long shot (most of the girls topped out at 5'5" to my 5'11" and most of the boys were a couple inches shorter) meant I couldn't hide, even if I had wanted to pretend to be less intelligent. So I didn't pretend.

But notice, intelligence was in the number one spot. I figured it was the one I could control. There wasn't anything I could do about my height (this was in the era before growth hormones).

Marfans is still fairly far down on my list of how I define myself. But that's another post.

Wednesday, January 14, 2009

Working together

This past weekend five of us--my husband and I, his sister and her husband, and his surviving brother--spent one full working day cleaning and sorting at the house where my husband and his siblings grew up. We've got a whole heap of work ahead of us and we'll be repeating this process for many, many weekends. Lucky for us, we all get along well.

But here's the weird, you-gotta-smile-at-life thing. My sister-in-law's husband comes from a family with genetic dwarfism. My sister-in-law was born with one mal-formed hip and short Achilles tendon that left her with one leg shorter than the other. I'm a Marf. There's over a foot difference in our height. We work together pretty well, though. Some of it is due to complementarity--having someone to reach the places you can't--but some of it is an attitude we all have from being outside the normal spectrum.

Food for thought--does any of this have anything to do with marrying siblings or siblings wanting to marry us?

Hmmm. If you have any ideas, let me know.

Thursday, January 8, 2009

After the shouting

I'm not doing so well the alliterative posting schedule (Marfan Monday), mostly because life has been a bit hectic. Even if I can't stick to Mondays, I will try to post weekly.

and now

on with the Marfantastic Show.

The shouting and flailing all have to do with the 7 stages of grief. I may have gone through grief before, but this was the first time I woke up to cheeks that were damp because the tears had been falling while I was asleep.

Because this wasn't the first time something awful had happened to me, I knew some of the things to do--exercise, massage, talk to my therapist (I said it wasn't the first time something awful had happened).

One morning, as I was walking, something the doctor had said when she gave us the diagnosis popped into my head. "This can be a difficult diagnosis for a teen athlete." My daughter is no athlete--she's always preferred cooperative games to competitive ones and loves to dance--so getting out of the team sports part of phys ed class was no big deal.

I started imagining what it would be like for a middle school student, one the same age as my daughter, but a girl who built her whole life around a sport, the way I've seen some kids do. I knew how she would field. The world as she knew it was over. But she was only 13. What was she going to do with her life now.

Since I'm a writer, I knew what I had. But I also resisted. I'd been working on a story about a first overnight. I wanted to finish that story. I didn't want to work on this story, because it felt like I was exploiting something that wasn't necessarily mine to exploit.

That was in April 2001. By July I had accepted that this was a story I had to write, even if, in a way, I still didn't want to. I was the only person who could tell this story they way I thought it needed to be told. In September, when my daughter started school, I started to draft.

It didn't pour out. Some days it barely dripped out. But I didn't stop. I wrote the really sh**ty first draft Annie Lamotte talks about. I wrote I don't know how many more drafts. I shared it in bits and pieces with my writers group. They critiqued. I revised and revised some more. Three years ago I finished "Spider Fingers." It's my first completed novel manuscript.

I've submitted "Spider Fingers" to a number of editors and one agent. So far no takers. At the moment, it's with another agent and soon I'll query others as well as submit to a couple of specific editors. My goal for 2009 is to find a home for "Spider Fingers," while I work on several more.

I don't believe that when life hands you a lemon you should make lemonade. I'm with Calvin of "Calvin and Hobbes," who once said, "When life hands you a lemon, I say, zing it right back and add a few of your own."

"Spider Fingers" is not sweet. Having to find a whole new identity at age 13 is not a sweet thing to have to do. But I hope my novel finds readers who take comfort in knowing that someone else their age was able to find a way to make her life satisfying again.

Thursday, January 1, 2009

flailing around and shouting

Sir Terry of Pratchett, one of my all-time-favorite authors, said about his diagnosis with a form of Alzheimers: "I didn't know where to go and what to do and there was a lot of flailing around and shouting really." (Source: http://news.bbc.co.uk/2/hi/entertainment/7804693.stm ).

That was me after the Marfan diagnosis. Because it was so freaky. I've got other health problems, off of which raised their pointy-fingered hands and poked me, usually in extremely tender parts of the anatomy--the gut (ulcerative colitis) or the leg (major DVT). Not Marfan's.

Hence the flailing and shouting. Because I felt perfectly fine, so I had to be perfectly fine. Plus, I know that I am going to die (see under DVT). But not my child. You can't have my child. Who is also fine.

Cue TV static for as long as it takes.