The average reaction to adversity seems to be to struggle toward acceptance. Maybe because I seem to have been born a contrarian, I struggle toward denial. Honestly, I would like to be able to do denial. I would like to sail up that river:
Here's what I'd find: My life, the way it was for the first 42 years. My only annual doctor's visits would be of the feminine variety. I'd still have those every-third-year colonoscopies to look forward to, and daily meds, because ulcerative colitis is a definite presence in my life, and if I skip the meds for a day, I am most definitely aware of the effects (not pretty, believe me).
In a way, it would be easy to deny having Marfan's. After the diagnosis, nothing was different. Not really. Seven years later, nothing has changed. No meds (well, except for the trial, but that's over). No significant changes in measurements.
But Marfan's does explain why I am so tall, and why I was a tall teenager in an age when very few girls hit 5'10" or 5'11" (or, as I have said for a long time, 5'11" 3/4"). It explains the stretch marks on my knees and hips. It explains the growing pains and the buck teeth. It explains all those things it was so difficult to accept when I was a teenager, the things I did come to accept and appreciate when I was much, much older.
So maybe, denial is attractive, because, if I accept that I have Marfan's, then I am, in a way, accepting that when I felt like a freak of nature, I was, somehow, right, and all the pain and struggle before I came to acceptance was really for nothing.
For now, I'll keep keep paddling, here, where acceptance and denial flow together into the stream of life.
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.
3 comments:
I can't believe you used the same term I use. "freak of nature". I use it to describe myself to Doctors so they can throw their preconceived ideas out and realize I don't fit 'traditional' problems they see.
After the Mayo Clinic looked at me they still don't know where I fall but they are going to treat me like I have Marfan's. It's a place to start. I wish you'd write more on this.
I don't think we are freaks at all this is the way God made us and I'm grateful.
Hi, I'm a teenager and recently found out it is very very likely I have Marfan's Syndrome. Although they have not yet done any tests I have a great deal of the symptoms (tall, long fingers, long face, small jaw, high-roof of mouth, tire easily, heart irregularities) and also have back pain from scoliosis which is somehow connected I think. Anyway, it was interesting to read your blog. I also have ambitions to be a writer someday! :)
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