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.
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2 comments:
I've been blogging about my Marfans and thought to share my blog with you. I was diagnosed as a child, but only began to write in the last few years. It has been a welcome release. If it helps or gives you a sense of commonality, I am thankful that it serves a wider purpose. Feel free to share it with your daughter as well; I know what it is like to be a young woman with Marfans. Best health always.
http://marfan-syndrome-blog.blogspot.com/
Thanks for letting me know. I'm now following your blog and I'll welcome your feedback on mine.
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