Risk-Taking

I posted a poem on my LJ blog a few minutes ago, but it, and the article in The Atlantic that inspired it got me thinking once more about how we seem to have become a risk-averse country and why I am not, or am no longer risk averse.

It comes down to this.

Life. Is. Risky.
Embrace the Risk.

Forget terrorists and criminals, other drivers, smoke and fire, floods, and all the things we think we've protected ourselves from, with border security, seat belts, police, fire fighters, smoke detectors, insurance, medicine, etc. It goes back to the Cosmo Moment.

When the doctors started talking about meds that would lower the risk of a cardiac dissection (not prevent it), I started realizing it was all about risk management, and that got me thinking about how much we emphasize safety and the price we pay for emphasis. I'd rather be free than safe.

And part of being free means taking risks. That's one reason why my daughter went to India as a high school junior with my blessing--it was a huge risk for her in all kinds of ways, but she knew it would change her life (and it did). For myself--I submit manuscripts--believe me, the failure of rejection is a very real condition for a writer, but if you don't submit, you certainly never will be published. Mind you, I'm not running back into a burning building for a kitten, but I do intend to go for a ride in a glider one of these days (although I don't think I've got the guts to jump out of a plane and skydive).

I don't worry about playing it safe because I know there is no such thing as 100 percent safety. I'd rather Live.

Tall teens

The thing I keep coming back to when I think about Marfan is how, even when I didn't know I had it, it shaped my life. By making me tall, skinny, and flat-chested in a world of short curvey girls, I had to learn how to handle sticking out early on. I was so much taller than almost every boy in my class that I figured I no one was ever going to be interested in me, and generally they weren't. So I did other things, like read and read and read (no video games in the mid-1970s) and babysit and earn money.

I guess that's why it was so interesting for me to create a contemporary character for whom being tall was an asset, which I think it is these days. There may still be a whole raft of body issues out there, but being tall is no longer the problem it was "back in the day." Or at least I don't think it is. I see so many college students who are 5'10" or over, and their clothes fit and definitely aren't homemade. But I wonder what it's like for them in junior high. Any thoughts?

A Dog's Life

I was watching the vlogbrothers post this morning, and wham--there it was, about a minute in: "A three-legged dog is the same amount of happy as a four-legged dog." Count me as a three-legged dog. Sometimes you have to make accommodations, and you may end up running at the end of the pack, but the important thing is to run and fetch and do all the things you love.

The Cosmo Lesson

This post's title has nothing to do with the magazine, and everything to do with one of my favorite movies--"Moonstruck." Olympia Dukakis has this wonderful line. She's sitting in the chair in the living room after she's had a dinner out by herself and met a man she does not have an affair with. Cosmo, her husband, comes home from the opera, where he's been with his inamorata. He walks into the living room and Rose, Olympia Dukakis's character, says, "Cosmo, you're gonna die." There's a pause and he says, "Thank you, Rose."

That's pretty much what the diagnosis of Marfan did for me, once I'd gotten over the panic of discovering that my child was mortal (not something parents accept easily), and once I'd gotten over anger of the "why is something else happening to me" variety(I have a chronic condition that was diagnosed more than a decade before the Marfan's, and a few years prior to this diagnosis I had a major DVT--blood clot--in one leg).

Yup. I'm gonna die. One of these days. One way or another, it is going to happen.

So you know what? While I'm here, I'm going to live, and I'm going to enjoy it.

I don't gorge, but I eat good food without worrying about a little bit of fat, a little bit of sugar, or a little bit of salt. I definitely eat dessert.

I'm no couch potato, but I do yoga because it keeps me grounded and take walks so that I can see what's going on in the world around me. I garden because I like playing in the dirt and having the freshest possible vegetables right outside my door.

I do save money for retirement and I don't go on spending sprees. But I don't deny myself trips to places I want to see, or books I really want to read, or classes and conferences on writing.

Most of all, I try to keep my eye on the things that truly matter: my family, my work (writing), my community. And I try not to take anything for granted.

Because I am a Marf? Maybe, or maybe because I'm human. Death and taxes may be the only two sure things, but we all know when our taxes are due. We don't know our ultimate deadline.

my life as a guinea pig

I can't believe it's been almost a month! I never intended to go that long without posting to this blog. Blame it on too many deadlines and too many hours on the road.

Even though this blog is more about my life than it is about Marfan's--because other people have that really well covered--I do want to talk a bit about my current experience as a medical guinea pig for Marfan's.

Last summer, when I was in for my annual cardiac check, my cardiologist told me about a study being run out of Brigham and Women's Hospital in Boston (There's info at http://clinicaltrials.gov/ct2/show/NCT00723801.)

Turns out, it's not so easy to find adults who fit the profile for this study, because most people with diagnosed Marfan have had some sort of cardiological "incident" and have had surgery. Not me.

I've also never taken any beta blocker, because as those of you who have ready earlier entries in this blog know, I never saw a reason to. No one in my family has ever died of any complications from Marfan and I would bet cold hard cash I am the third generation to have this condition.

So now I'm taking either Atenelol or Losartan--only my pharmacist knows for sure. It's been interesting. I take the pills before bed, but at first I definitely noticed I felt more tired when I got up in the morning (beyond the normal late in the week omigod-I-can't-get-up-to-the-alarm another day tired.

Now I don't notice anything much, unless I have to climb a hill first thing in the morning. Then I'm pretty whipped. I'll be going off the medication in another three months. I'm looking forward to seeing if there's any sort of difference afterward.

So, this has been my bit for science.

The one thing I do know is that seven years ago I would have turned down the cardiologists' suggestion that I participate in the proverbial New York minute. I would't have wanted to be involved. Of course, back then I didn't know how I was going to live with this, and now I know that, for me, Marfan's is basically one more thing I know about myself, like my blood type (which I've forgotten), or my IQ (nope, not sharing that). Marfan's is not scary--any more. It's not something that has made my life turn out for the better (gag me). It simply is.

More soon, I promise.

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.

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.