My Dexy Life
The prenatal dex project (campaign? offensive?) has turned out to be like having a child: I can’t really remember what life was like before it. Did I have endless amounts of free time before it all started a little over a month ago? Because now it seems to take up hours and hours each day. And hours and hours each night. Writing the follow-up letters, helping allied researchers (and goodness, there are a lot of those now, in epidemiology and genetic counseling and bioethics and endocrinology), managing the army’s needs for supplies and intelligence.
Serious progress this week, though. On Wednesday afternoon, Ellen emailed excitedly with the news that the feds (specifically the Office for Human Research Protections) wrote us back to say they are now officially investigating Weill Cornell Medical College and Mount Sinai Medical School, pursuant to our letters of concern.
I mean, it’s what we were hoping for, but their letter made it clear that they didn’t have to do it. They agreed with us there was cause for concern, and then they asked Cornell and Mount Sinai for preliminary reports, and now they are continuing to ask for more because apparently the preliminary responses from Cornell and Mount Sinai didn’t satisfy them. And the FDA is investigating the off-label promotion of dex to pregnant women as “safe and effective.”
“Awesome!” Ellen wrote, and I agreed, even as I felt terrified. What if we were wrong? But how can we be? I’ve seen all the evidence, documented it myself, plus I know a bunch of insider info from our moles that I can’t reveal but that confirms we must be right. And Aron read the letter from the feds two times for me, and said “they think you may very well be right.”
Still, I spent Wednesday night mostly sleepless. When I did manage to fall asleep, I’d dream about dex. I dreamed that there was a core collaborator whom I had forgotten to keep in the loop; that I had misread a major paper; and that the Department of Agriculture was also investigating. (Huh?) And when I woke up, which I did again and again, I’d immediately find myself thinking, “What if we’re wrong?”
I find myself doing this loop of dex-induced anxiety:
“What if I’m wrong? But how can I be wrong? Plus, it is that doubt that is healthy, that shows that I am not close-minded to contrary evidence. But wait, maybe that confidence boost I get from knowing I’m not close-minded is going to make me over-confident and I’ll get close-minded. So maybe I am making the problem worse.”
Yesterday I gave a talk related to prenatal dex at my program. Afterwards people’s mouths were mostly hanging open. Like me, they could see how this could have happened, in spite of all our attempts to create institutions that would prohibit this. And the lesson I was telling them, explicitly, was that this is probably not a case of lots of evil people, this is just a case of lots of normal people blinded by the vision-tunneling effect of self-interest, the way we all are. They got it. The real horror of Tuskegee: we are human.
Tod went out to lunch with me afterwards, and I had a glass of wine, which I almost never do before five, especially not on a day I have to teach. I confessed to Tod I was really anxious about the dex bomb. The potential for unintended consequences: inspiring misleading press accounts; causing entrenchment among the pediatric endocrinologists; forcing more red tape to be introduced at IRBs, thus getting in the way of reasonable research; worrying parents who had no idea what they were signing up for (and them wanting to kill the messengers...us); and even the potential for a temporary shut-down of big sections of medical research at Cornell and Mount Sinai, which could mean really important biomedical research being interrupted.
Tod was confused. “But you had to do this,” he said. Right, I answered, and took another gulp of sauvignon blanc.
There are times when my sense of proprioception seems to have me assuming a position I’m not actually in. And lately that means I am mentally curled up in the fetal position in a corner somewhere. I can feel myself curled up that way, but instead of having my thumb in my mouth, I have both my hands on top of my head in a gesture of “What am I doing? What is wrong with me?”
Over breakfast the other day, the kid started telling me this long and involved story about a spy technique during the second world war, about how some people behind the front lines used a special signal to indicate which communicates were relaying real information and which were fake, and it was indicated by the stamp on the envelope. With the real letters, the ones with the accurate information, the queen on the stamp had an extra set of bags under her eyes.
I was wondering what on earth he was talking about. And then I realized.
“Honey,” I said, “are you telling me I have great big bags under my eyes?”
“You really do,” he said, taking another mouthful of his crepe.
My dexy life. I resolved then to make sure the kid is not collateral damage. I resolved to I shut down the computer completely between the time the kid wakes and when he goes to school, and between the time he comes home and goes to bed. I’m trying.
I said to Aron a few days ago, “I’m just so tired of making people unhappy. I wish I could do something to make someone happy.”
He quickly answered, “You could [insert here slightly obscene suggestion of what I could do to him].” I burst out laughing. “I’m just trying to help you out!” he said. “Only thinking of you.” I laughed more, and realized for the millionth time how I couldn’t do this stuff without him.
I mentioned the funny conversation to Ellen, Janet, and Anne in an email about our dex work, and also pointed out that the more I read about dex, the more I was struck with the central irony that they are trying to prevent girls who might grow up to be like us: uppity types who are ballsy enough to call out big docs who aren’t playing by the rules. Dr. New sure does prefer the shy girls, it seems, and I doubt the four of us uppity girls are giving her much reason to change her mind.
But how is I like cock, I wondered allowed to my compatriots? We all had a good laugh. They don’t require me to justify my sexual orientation, even if my history of aggression and my 2D:4D finger ratio do seem to suggest I should prefer women.
The universe, meanwhile, heard my cry for my desire to make someone happy, and did its usual work to take good care of me, and sent me a couple of parents who have a child with gender dysphoria, who want to just meet me for a coffee to talk about their concerns. Oh, thank goodness. I can help somebody out by listening and sharing some information and some leads. Something quiet and helpful that won’t make my fetal-position, bomb-shelter proprioception kick in. I won’t make them “happy,” but they won’t want to kill me.
A nice break, too, from the bioethicists we’re making uncomfortable by actually doing something so aggressive. Somebody called me a hero again the other day, and I just lost it. I am so fucking tired of being seen as heroic. All I want to be seen as is good, such that people who are also good (most of us) get that this is part of the prereqs for that self-identity.
Stand up, people, I want to scream.
But then I guess it takes having had a certain amount of androgens in the womb, or something, to make uppity-and-sympathetic people like Ellen and Janet and Anne? I find myself imagining that, if Maria New had had her way back in the nineteenth century, we never would have gotten the right to vote. She would have prevented women like us.
A silly counter-historical fantasy. Made sillier when I realize that New is herself an uppity woman. That’s how we got here in the first place. One big cycle of uppity women empowered by uppity women foremothers who gave us the ability to fight over the possible prevention of uppity women.
No wonder I find myself needing my man. Darwin knew the pleasure of going home to a nice soft woman. He put it on his list of reasons to marry. But I’m still with Mae West in terms of my preferred form of relief. For this particular hard woman (with a soft center), a hard man (with a soft center) is just the thing.