I suppose the more information you have the more power you have, but at points I feel like the more I know the weaker I feel. This isn’t something I remember learning about when we talked about information gathering and health informatics in library school, though admitedly these were not areas I pursued. I don’t remember anything about people trying to avoid getting more information about themselves; only about alternative routes toward more of it. It might be what they call “information overload”, but I’ve always sworn up and down that I don’t believe in that. It’s not quite that.
It’s as if I have constructed this very careful house of cards, where each card is a piece of information I would like to believe about myself and my own body. I suppose we all have one, more or less; we accept some failings of our bodies, and rely on other non-failings as part of our self-image. We couldn’t walk if we didn’t believe our feet would hold our weight, of that our joints would cease to swing in mid-motion. Each time a health professional comes at me with something that pulls out one of my supports in this house of cards, my careful construction collapses on one side. But I regroup, I rationalize, I see the bright side. He didn’t really mean that, or that’s just a worse case scenario. She doesn’t really know, or she’s just blinded by her specialty and sees what she wants to see. And people help me in my disinformation reconstruction too: It’s the money, they want to see it this way so that they can get more money from your case, or doctors always overreact in fear of getting sued. So then this phantom card sets up where the old one was. The phantom card that I need so desperately to be real. (It might be real, who knows?) And my house of cards stays up, as long as I don’t think about it too much.
So I luxuriate in my disinformation, or my not-quite-what-she-said information, my hopeful information. Google is a wonderful thing; it can go either way, support what anyone, everyone says.
And then I go back to see the people with the charts and the certainties, and they take another swipe at my house of cards. You’d think the farther along you get the less likely these little offhand comments (things like make her an urgent appointment with the surgeon and you’re lucky, this is one of the curable ones or if you have to pick, this is the one to choose!) completely destroy me. I want to be surrounded by my disinformation. Is that so much to ask? I’m not fighting the recommendations, I’m being a good girl and I’m following all the instructions to the letter. I suppose there’s only so far you can go down that path, pretending to humour your doctors. It’s hard to be that pompous. What do I know? There comes a point where you have to believe them. They’re the experts. They sound ever so certain about what it is, and they’re so reassuring about how everything will be okay.
My surgeon says: You’re going to die of old age.
He points out the part of me with the alien cells in it, the little terrorists, and from that point on I can feel it all the time. A constant, dull ache in my throat. Lying in wait. I’d tear it out with my own hands if I could.
But I still suspect that they’re wrong about it. Or, I suspect they’re wrong a great deal of the time, and a portion of the time I feel the utter terror in the belief that they are entirely right. But they have no real proof. Only an educated hunch. Hunches are wrong all the time. In a matter of days they will slice me open, take it out, and know for sure. And then we’ll see who gets the last laugh.