Ain't Misbehavin' - Much!

They called it Gaucher Disease. It's extremely rare, they said. It involves the spleen, the liver, the bones and the blood. Start to give away your assets, they said. You're not going to live very long. Go on infusion therapy: two hours a day twice a month with a needle stuck in your arm. $400,000. a year. If this will use up your medical insurance, no sweat. Change jobs. If your veins collapse after all this poking, no problem. We'll implant a permanent stent into your chest. Don't worry. Big Pharma has the answers. Big Mama knows the rules.

In earlier days, in Eastern Europe, old men with beards made the rules. My parents, who were first cousins, were encouraged to marry. Today's sages, equally dedicated, would have told them not to have children. Ishmaela, or not-ever-having been: is that a choice? Maybe the gene seed was flawed, but the seed of rebellion was germinating.

Maybe it helps to be born stubborn. To remember your Mother's shock when you burst out of the birth canal with exuberance, eager to take on the world. Your Mother hoped for obedience. You wanted to swing on a rainbow. You were a mystery to her. What she understood were the chicken feathers that she had to pluck every Friday night. That was her obedience. Maybe if she had fought the feathers she wouldn't have died of a stroke at 47.

Plucking chickens nauseated me. And I hated the the juice of rare beef that I was forced to drink to bring color into my cheeks. Is it any wonder that I haven't eaten beef or chicken in thirty years? Why was everyone trying to change me into something other-than? Our apartment had a dumbwaiter to empty the trash. Even nature seemed to view me as a reject - my body was too dumb to detoxicate.

I am not diseased, I told them. I was in such a rush to be born that I simply left behind an enzyme. I am not a patient, an invalid, a broken machine needing repairs, a living trash can that can't be emptied, the little engine that couldn't. Instead of giving away my assets I'll enlarge my house. Instead of sitting tied to an IV-type tube, I'm going to Istanbul. And I'm learning to speak Greek, so I can converse with those gorgeous men on my next trip. I won't take medicine. I'll take note - of what makes me feel good and what brings me joy. I'll measure my days in hugs, not hours or medicine vials, and I'll choose friends who offer love, not pharmaceuticals. I'll choose doctors who listen to me, not to textbooks. (One of those I fired recently said, "The first thing we'll do is replace your hip. No, I answered. The first thing you'll do is discuss it with me, because I'm in charge of my body.")

Then there was the art teacher in the third grade who told me, "You'll never be an artist. You can't draw a tree." She never got beyond teaching third grade.

Big Mama Pharma recently said to me, "You're a mystery to us". Sometimes I'm a mystery to myself as well. That's okay. Life itself is a mystery. And death. And the smell of a pterodactyl. And the height of a hug. But wouldn't you rather be a mystery than a human pin cushion? Do I still have a bit of genetic misbehavin' going on? Of course. I simply left the naysayers and the negativisionists behind. For while they're clucking and tsking I'm swinging from a rainbow and heading off to see the Panama Canal. Why don't you join me?

c. Corinne Whitaker 2007