Control

I hate not having control over things.

I am a perfectionist. Not in all aspects of my life, but certainly when it comes to writing and trying to express things. I research meticulously. I wouldn't go to print with my ass hanging out, and I wouldn't interview someone about a medical condition I didn't understand and then MAKE SHIT UP.

I am being featured in Dr. Oz's new magazine, to debut in March. There will be an article about me and the importance of family health history. The journalist writing about me in several e-mail messages still couldn't spell spherocytosis (REALLY!) and was talking about how it made oxygen levels dangerously low. Which is true in a vague way, but not really. It causes anemia and hyperbilirubinemia. At the very least, people do understand anemia, and it's possible very quickly to explain that people with HS have red blood cells that are fragile and shaped like spheres, not concave discs; they have a much shorter life-span because the spleen cleans misshapen red blood cells out of the blood. That's why people with HS have enlarged, scarred spleens over time.

Ugh.

The fact checker called and said that the journalist wrote that in nursing school, in health assessment, that my spleen was enlarged and that I screamed when it was touched. I did NO SUCH THING. Yes, it was enlarged, and it was sore, but I have a high pain threshold. I did not scream. It being enlarged that fall was just the first sign that my spleen was at last giving up the ghost. People who know me in real life know that I don't usually scream when touched, and that I didn't even cry when I broke my arm. Fuck.


I want to say, "NO! You have it all wrong! I want to write the story myself. What was the point of a six-hour interview if you weren't listening?"

Do people have no standards anymore? Maybe read up on a subject that you're writing about if you're unfamiliar with it? Certainly, you shouldn't simply embellish someone's story if it's not a novel; my crazy life story is quite compelling enough if you stick to the facts. I don't want to sound like a hysterical idiot because the author doesn't understand the subject: either the medicine in it, or me. Ask questions! It's okay.

I am intensely frustrated because the content of the article is beyond my control. If it makes me seem like a dippy woman, I will lose my shit. I should ask to see it and make sure there's not any more lameness in there. I know it won't be perfect, and the goal is to open conversation about DNA and family health history, but bloody hell, I hate mediocrity.

Don't paint me to be some half-baked moron.

At least the photographs are fabulous.