And the fingers that prove it.

This is me, a writer. You can read about that part of my life at http://wordsrmylife.livejournal.com/. Marfan-tastic Life is going to be my space to talk about living with Marfan Syndrome, a connective-tissue disorder that is inherited, although it can happen as the result of a spontaneous mutation. I think mine is inherited. My mother's father was quite tall--over six foot--for a man born in 1870-something, and thin, with long fingers. My mother isn't so tall, but she's really thin, her arms are extra-long and her teeth are crowded and her sternum is slightly depressed. I'm tall, like my grandfather, about 5'11", which meant that when I was growing up in a part of the country where girls usually maxed out at 5'4" or 5'5", I stuck out like that one old-growth tree left on the regrowing hillside. I could never find clothes that fit and were affordable, so I sewed my own.

I have long fingers, although there are those with longer. I can span an octave and two keys on the piano, although that definitely doesn't mean I have musical talent. Turns out, I'm better when the keyboard has letters, like in my profile photo. I have really long feet--size 11-- so finding shoes was also tough. One time, I found what I thought were some really cute denim sneakers. When I wore them babysitting, the five-year-old said, "Look, Kathy's got clown shoes." At least she thought they were cool.

I didn't know I had Marfan Syndrome until I was in my 40s, although I think one person suspected. When I had my pre-college physical, my regular doctor was on vacation and this other guy suggested I have my heart murmur checked out. So six months later, when I was home from college, I spent overnight in a hospital having tests. I was the one tall skinny girl in a ward full of obese girls who were trying a new diet. Once again, I stuck out. After a variety of tests, of which only the revolting barium swallow remains in my memory (think library paste without the mint flavor), I was told I had a benign heart murmur, caused by a lack of space between my sternum and spine. I was perfectly healthy.

Except I wasn't. But I'll tell you about that next time.

If you want to know a bit more about living (and dying) with Marfan, something that might break your heart [I'm warning you, I like puns], watch this: