Let He Without Syndrome Cast the First Stone
Genetic testing and getting answers when nobody's asking questions
Back when my aorta dissected in 2004, nobody could figure out why. Naturally, they assumed it was something I did.
I can’t really blame them, despite the fact that their lack of imagination almost killed me. I was 31, long-haired, sweaty, uninsured, and talking all manner of nonsense when I showed up in the ER. I kept forgetting conversations I’d just had. I filled out my admission forms and wrote down the phone number from our 1970s landline. At least one doctor reacted to my agitated confusion by testing me for every drug known to science.
Even cutting me open answered no questions. They replaced my damaged heart valve, patched me up, sewed me shut, and kept on pestering me. Do you think you might have Marfan Syndrome? We think Abraham Lincoln had that. You’re tall enough for it. Let me see your fingers. They’re not really elongated like Marfan. Do you have any connective tissue problems?
I was spectacularly unhelpful, still befogged with ICU dementia, and I’d never heard of this Marfan character anyway. When they told me I could grow up to be President, this is not what I thought they meant. Leave me alone.
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