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 28, 2009
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.
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.
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.
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.
Saturday, December 27, 2008
It's a gift
Last Saturday, the Saturday before Christmas, I had to get groceries. The store was crowded with holiday shoppers. Halfway down the "Baking Needs" aisle, a three-year-old looked stricken, on the verge of tears. His mom was talking to him. A store clerk was there. The clerk caught sight of me and said, "I bet she can help," and pointed up. A green balloon bumped the ceiling, its ribbon dangling above the top of the store shelves. I reached, stretched just a bit, and snagged the end of the ribbon. The mom slumped with relief, the boy smiled. She prompted, "What do you say?" and I'm not sure I've ever heard more genuine gratitude in a "Thank you." I said, "You're welcome. Merry Christmas!" As I continued down the aisle I heard him say, "Tie it tight this time."
Sometimes the extra height and extra-long arms that come with Marfan make you just the right person for a particular place or time.
This should have been posted on Monday, December 21, but wasn't, because of other things that went on in my life during these holidays.
Sometimes the extra height and extra-long arms that come with Marfan make you just the right person for a particular place or time.
This should have been posted on Monday, December 21, but wasn't, because of other things that went on in my life during these holidays.
Tuesday, December 16, 2008
Monday.5 - Running in place
When we got the diagnosis, life froze. We went through the motions. My daughter went to her extra dance rehearsal as planned. The portrait of the poet on the NYTimes Book Review is etched in my brain, although her name is not and the Book Review was left behind in the theater and lost. I went to my local school to help with a project, because I'd already made the commitment. Talking about how best to phrase something in a report, reciting the rules for semicolon use let me focus for a few hours, let me pretend life was the same.
But it was as hollow as one of T.S. Eliot's men. Not only did I cry myself to sleep, I woke up in the middle of the night with tears streaming from my eyes. This was not the first time something bad had happened to me, not even something bad to my health. I'd stressed myself into a chronic condition that led to a decision to leave graduate school ABD, I'd had a life-threatening blood clot in one leg. The difference between those events and this was that they had primarily happened to me. This had happened to my daughter because of me, without my being aware of it.
The pediatric cardiologist who made the recommendation had mentioned a support group. My cardiologist did the same after my diagnosis. He also offered to put me in touch with someone "in my situation." Turned out it was the parent of a son. Not really my situation at all. Because when pregnancy may result in complications for the mother as well as a genetic condition for the child, the issues are different for guys than for girls. My daughter and I talked it over and decided we didn't want to go to any support group. We didn't want this condition to define us.
Next week: What we did do.
But it was as hollow as one of T.S. Eliot's men. Not only did I cry myself to sleep, I woke up in the middle of the night with tears streaming from my eyes. This was not the first time something bad had happened to me, not even something bad to my health. I'd stressed myself into a chronic condition that led to a decision to leave graduate school ABD, I'd had a life-threatening blood clot in one leg. The difference between those events and this was that they had primarily happened to me. This had happened to my daughter because of me, without my being aware of it.
The pediatric cardiologist who made the recommendation had mentioned a support group. My cardiologist did the same after my diagnosis. He also offered to put me in touch with someone "in my situation." Turned out it was the parent of a son. Not really my situation at all. Because when pregnancy may result in complications for the mother as well as a genetic condition for the child, the issues are different for guys than for girls. My daughter and I talked it over and decided we didn't want to go to any support group. We didn't want this condition to define us.
Next week: What we did do.
Monday, December 8, 2008
Finding Out
So I thought I was just this really tall, gangly (and geeky) girl and I was all ready to live my life alone. Except that's not how it worked out. I got married after college (and I am still married to the same guy, after almost 30 years). But I wanted to go to grad school and didn't see how I could combine that with being a mother. So it wasn't until I worked myself into a stress-related chronic condition and left graduate school before earning a Ph.D. that having a baby seemed like something I was ready for.
Because of that chronic condition, (which isn't related to Marfan), we only had one, a daughter who is now 19. She was a sweet baby and a wonderful little girl, always slightly above average in height, but not extra-tall or with extra-long arms or any of the standard Marfan markers. It wasn't until she was in 7th grade and her pediatrician heard a heart murmur that he said he "couldn't rule in or rule out." He sent us to a pediatric cardiologist who looked at Lydia and then looked at me and I think she knew even before she had the echo results.
That's right. I found out my daughter had Marfan's before I knew my diagnosis. But I knew I had passed on something I didn't even know I had to one of the people I love most in all the world.
As we sat in the car in the parking lot two images alternated in what thought processes I had left: A cement wall just fell down in front of us and we slammed into it; and Gandalf saying to the Balrog "You. Shall. Not. Pass."
And I didn't, not for a long time.
More next Monday. Because I'll be posting to this blog weekly, on Marfan Monday.
Because of that chronic condition, (which isn't related to Marfan), we only had one, a daughter who is now 19. She was a sweet baby and a wonderful little girl, always slightly above average in height, but not extra-tall or with extra-long arms or any of the standard Marfan markers. It wasn't until she was in 7th grade and her pediatrician heard a heart murmur that he said he "couldn't rule in or rule out." He sent us to a pediatric cardiologist who looked at Lydia and then looked at me and I think she knew even before she had the echo results.
That's right. I found out my daughter had Marfan's before I knew my diagnosis. But I knew I had passed on something I didn't even know I had to one of the people I love most in all the world.
As we sat in the car in the parking lot two images alternated in what thought processes I had left: A cement wall just fell down in front of us and we slammed into it; and Gandalf saying to the Balrog "You. Shall. Not. Pass."
And I didn't, not for a long time.
More next Monday. Because I'll be posting to this blog weekly, on Marfan Monday.
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