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?
About Me
- Marfan-tastic Life
- I'm a freelance writer and editor and I teach editing. The plot for SPIDER FINGERS, my early YA novel about a soccer goalie who is diagnosed with Marfan Syndrome, hit me over the head after my daughter and I were diagnosed.
6 comments:
I'm a young adult now, but in my teens I definatly felt like I stood out. Diagnosed when I was 3 years old. I was the tallest in every class until HS. I remember kids trying to "hide" behind me in pre-school when they were in trouble because I was so tall. But once I got to HS people started catching up with me. Then people were more interested in other people suddenly becoming tall, but they were used to me always being tall. It wasn't till then that I didn't stick out as much. Although tall jeans are heaven sent!
I stopped growing at 5'10 so my height was really never an issue. But my body weight / height ratio WAS up until about a year ago. Thinking back to my junior high years, I can't really recall how my height played a role except that all of my friends at that age were 4-5 years older. I always thought it was because I was a first born, fairly mature adolescent... but perhaps avoiding my peers helped me to also avoid any awkwardness about body image? There is a pretty good chance this is true.
I'm going to be tested at the University of Penn in August for Marfan's. I'm 22, but when I was a teen and a kid I was extremely tall and thin for my age. Luckily I stopped growing at 5'11"! But I still have awkardness when I move...I think that has effected my self-esteem the most physically. It's hard to go to Penn State and have "perfect" girls walk past you and feel so awkward and "floppy" if you will, haha! I'm glad I'm not alone!
Shh, don't tell, but so many people (guys, too), think that they're awkward and clumsy (or too short or too goofy, or that everyone will notice they're legs are bowed or knock-kneed). And yet, you get to your 30th college reunion, and everyone looks more or less middle-aged--except for the one guy who hasn't changed a single bit (no gray, no extra pounds), and I bet he's got a portrait hanging in an attic that looks simply horrible.
The Perfect Ones are a definite minority, ya know.
I'm Kim and I live in the Philippines, I have Marfan syndrome. All you stated there was true..as a girl its so hard for me to interact with others. I never wished for someone to be interested on me but I always wonder what it feels like..I grew 6' feet tall.
Hi I'm a fourteen year old and I was diagnosed in spring of 2008. Last time I checked I'm 5'11 3/4. And fortunately for me I'm homeschooled so I've never had anyone teasing me. I'm very fortunate I don't have all of the extreme symptoms that some do. I have the heaght (obviously), the unexplainable stretch marks, the arms that when added together are longer than I am tall, and the sternum. I haven't been to the doctor since I was first diagnosed. I go to the chiropractor because I have an extra piece of bone on my tailbone an my spine is twisted. Living with Marfan is very complicated but it's the way I'm made. <3
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