One Day

13 Aug 2008

I woke up today still in a funk that I’ve had for a few days, maybe even a few weeks. The chief cause of this funk is a problem I’m having with my writing. I’ve been feeling unsuccessful as a writer. I know that sounds ridiculous given my c.v., but there you have it. I’ve been trying to place stuff in some mainstream places, and failing, and I just feel like it should be easier at this point. I mean, I’ve had essays published by the New York Times, the Wall Street Journal, the Washington Post. And two books with Harvard University Press, with big time, positive reviews. Why is it still so hard?

By now I should be what I’ve been aiming for:

Susan Sontag, without the cancer.

The funk got much worse the last couple of days because an intersex friend of mine was going in for surgery to try to fix what surgery was done to her when she was a teenager. Gerry has been saving up for this, planning for this, going through a lot of trouble to make it happen. And as she was getting ready for it, the sweet, honest surgeon who was going to do it examined her and told her he probably wouldn’t be able to make her situation much better. He certainly wasn’t going to make it perfect. He’d try hard not to mess any further with her sexual sensation, but she might very well end up no better off than she started. What they’d done to her years ago was so messed up. And, he said, even though he cut his price for her, she’d owe him a lot of money, no matter how the operation turned out.

She wrote to me, just before she disappeared into the hospital far away:

“Adversity only makes...suffering. It doesn’t create character, in my opinion, but only reveals it.”

When I read her mail about what the surgeon said, I just started crying. It brought me back to the hopeless, desperate sensation I had years ago when I realized that, no matter how successful our advocacy was, I wasn’t going to be able to put my friend Bo’s clitoris back where it was before they cut it off. We were never going to fix the past that haunted the present.

And, of course, this morning I woke up to read the New York Times front page about what’s happening in Georgia, ordinary people being bombed by Russian soldiers... It reminded me of my mother’s childhood, in World War II in a little Polish village. She described it once to me simply as, “The Russians would march through, and then the Nazis would march through, and then the Russians would march through.” (In her case, the Russians were the good guys.) My husband asked her a couple of years back whether, when she was a little girl, they made bread using yeast or using a sour starter. She looked confused. “We didn’t have bread,” she answered. “Even if we had had grain, we would have had no way to grind it. Everything was gone.”

And so my funk this morning was only deepened by a sense that it was utterly un-entitled. Gerry facing hopelessness. Yet more ordinary, innocent people being bombed. And poor me, oh poor, poor me: the Modern Love section of the New York Times doesn’t want to take a sappy little piece I wrote about being seduced into gardening by my mate.

The thing about one’s own misery, though, is that it doesn’t resolve just because one realizes it is stupid and selfish. So I talked about it with two of my closest friends, both of whom somehow managed to take my feelings seriously without disagreeing that I really ought to just get over it. Both know me well enough to know that what psychologists say about happiness is true about me: that nothing cures a funk like doing something good and helpful for someone else.

My first friend suggested that I recognize that having a project usually fixes my sadness and frustration. Hint, hint.

And my second friend reminded me how I had helped him once (we met through my work), and what it did for him. He said that, because of how I had helped him, he was able to enjoy so much more in his life than he had been able to before he met me. He said thank you, again.

Right. They were both gently suggesting I get off my ass and help somebody else. And I thought about it, and remembered that I had told myself, a few months back, that part of the reason nobody understands me--part of the reason I have a helluva time getting journalists, publishers, editors, agents, neighbors, doctors, and others to understand what I do--is that I both do and write. And I take both really seriously.

That’s what I mean when I say I aspire to be Susan Sontag; I aspire to be someone who is both living and writing about living. Calvin Trillin, eating and writing. Oliver Sacks, doctoring and writing. There are models, it’s just that none of them are historians who help living people born with norm-challenging bodies, and then write about it.

Anyway, the point is, I don’t just write, I do. And I don’t just do, I write. So a few months ago what I told myself was this: When writing isn’t working, for heaven’s sake, go do.

Writing hasn’t been working. So today I did.

I went out with my computer and my phone, out to my back porch, so I could keep an eye on my son and his friend. The two boys had a big pile of dirt, three trucks, and a hose. I knew they’d be good for four hours minimum. They were already getting dirty and silly. So:

First, I wrote a long, long email to a mother whose daughter has some funky sex chromosomes but who appears to be fine nonetheless. (This woman found me via the Oprah show I was on.) The doctors she’s run into now suddenly want to take out her daughters ovaries, in spite of the fact that the ovaries appear to be working just fine. The doctors are jumpy about cancer, I explained, in case she wasn’t clear about that. There’s reason to be concerned, I know, but it seems to me (I told her) that the mother’s instincts are right that they should hang on, slow down, figure out what’s really up. As I wrote to this smart, loving woman, leaving this girl’s ovaries in will mean she might be able to have babies, if that’s what she wants. She’ll keep menstruating (which you don’t really appreciate unless you’re a teenage girl and you can’t do it). And she’ll have better, easier bone health from those natural hormones.

I sent this mother a whole bunch of things to think about, and names and email addresses of three docs I love who will give her great honesty and smart advice. And I passed on to her what I had learned from all those parents who have educated me over the years about what children like this woman’s need. I closed with this:

You're all going to be fine, I am sure. What's most important, I've learned from 12 years of this work, is honesty and love. Dishonesty signals shame, and shame is the source of all the pain around this stuff. And it is unnecessary. There's nothing here to be ashamed of.

Take it from someone who is the mother of an 8 year old who knows more about sexual anatomy than most adults: kids can handle information if it is delivered to them in a way that suggests it is just the way it is, and it is OK. [Your daughter's] chromosomal type is different than most people's, but there are other people out there with the same type as her, and its normal for her. She's just different in that she'll now know how she's different genetically. Most of us don't know we are different from the average genetically, though we're all unique given our combinations of genetics and experiences.  

Love, honestly, laughter. And a little bit of advice from a good endocrinologist and a good geneticist and a good counselor type. And cookies.

I gave her my cell phone number in case she needed to talk in real time.

And then I moved onto a guy who is in his seventh decade of life who was born with hypospadias (where the urinary opening isn’t on the tip of the penis, but on the side) and who has never talked to another man with it. (Oprah strikes again.) This guy has been utterly isolated, for no good reason, as he’s struggled with one surgery after another, all to correct the problems caused by the first operation when he was a boy. I called him, apologized for taking a while to return his call, and assured him I’d work on finding him, this week, another man with hypospadias to talk to. He seemed so relieved. He said he’d never met another man with it. I corrected him:

“The medical texts estimate this might happen as often as one in ever 150 male births,” I told him. “That means every time you walk into a big grocery store, there are, in that store, boys and other men who were born like you. If they are not in that store right then, they were there yesterday or the day before. Men born like you, with hypospadias, are all around you.” He said no one had ever told him that. He seemed so relieved to hear he might openly meet another man like him. All the urologists he’s been to, all those years....none of them ever thought to introduce him to one other guy, or better yet, to introduce him to the Hypospadias and Epispadias Association (HEA).

I emailed my favorite adult urologist to ask him for help finding a better urologist than the one this man is seeing. The man asked me to help him find one who knows more, but who is also more sympathetic. “I know you’re treated with shame,” I told him. “That’s because hypospadias is about penises and it’s about urination, and we act like those are shameful things.” “That’s right,” he answered. “That’s why we don’t talk about it.” When I got off the phone with him, I wrote to HEA right away asking for help, and by email I asked a relative of his who had also been in touch with me to print off the stories from other men that appear on the HEA website, so he could see right away he’s not alone. (He doesn’t have a computer himself.) His relative sent me back a gushing thanks, and I felt embarrassed to be thanked for dong something that seemed to me to be the only decent thing to do.

Then I responded to the email of a young man who wrote to me scared because he thinks his penis is too short (in fact it’s within the range of what urologists consider normal for men) and because he doesn’t have much facial or chest hair. I told him about natural variation and also suggested he go talk about his concerns with a endocrinologist or an internist.

Then I firmed up plans for dinner next week with two young women who are going to change a city. One of them also found me through Oprah. She has androgen insensitivity syndrome (AIS), which means she was born with testes but is basically female. She kinda new she what she had, but her doctors didn’t want to shake her up too much by bluntly referring to her “testes” instead of her “gonads.” So I ended up telling her how she developed, how sex works for some people, stuff her doctors should have told her. Anyway, after we met for coffee, I hooked her up with the fabulous AIS Support Group, and now she has decided she wants to change care in her city for other girls and women with AIS. So I’m connecting her with a doctor who wrote to me, a young woman in the same city, doing a fellowship in pediatric endocrinology, who asked me how she could help make things better for people with disorders of sex development. Together, these two are going to make sure every specialist doctor in the city know about the AIS Support Group. And maybe they’ll do what I haven’t been able to do there--to get a bridge between pediatric and adult care for women with AIS.

By this point, the work day available to me had run out. My son’s friend’s mother had come to pick him up. She asked me about my day, wanting to know what I had done while the boys played, and I told her. She asked, “Do you get paid for this?” I laughed and said not really, not exactly. Just indirectly, with my sweet small part-time job with Northwestern’s medical school. Basically, my mate was off at work all day, paying for this. And I told her I was feeling a little guilty, because here he had been working all day, slogging through medical school reaccreditation paperwork to earn money for our family, and I had been home making a few simple calls, writing a few simple emails, and in response having lovely people feel like I’m some kind of saint dropped out of the heavens.

She hinted, rightly, that I had the best job in the world. I realized I wasn’t feeling nearly as sad anymore. I was laughing, and smiling, and feeling...happy.

My friend said a warm goodbye, and took home her son and his trucks. With my own son, I moved the remains of four yards of mulch we had had delivered a couple of days ago. Then I made us blueberry pancakes, with fresh blueberries, grown locally, and maple syrup, Grade B (thick and rich), also local. My son was telling me about his latest idea for building an airplane....

And I thought....

Maybe, one day, there won’t have to be an Alice who can tell people “You’re fine. Your child is fine. You just need to talk to this doctor and that support group, and you’re all going to be OK. What you need is to talk to people who treat you without shame and who understand what you’re going through.”

Maybe one day the next Gerry won’t need revision surgery, and won’t need me to write to her to try to keep her from feeling desperately hopeless. Maybe the surgeries will get as good as the surgeons keep promising, and they’ll truly be motivated by something other than fear and shame. Maybe there won’t be the need for so many of them. There will be nothing for Oprah to talk about. There won’t be that awful adversity forcing character to reveal itself, like a child forced to play piano for oppressive relatives who lie politely about talent and smell of old food.

Maybe, one day, I’ll just write, because there won’t be anything left to do.

But then what would I write about?

Tomorrow I’m working on two other projects I’ve been sitting on too long. One is a small favor I’m doing for the Bunker clan, the descendants of Chang and Eng Bunker, the “Siamese Twins.” Just helping them understand a medical condition that runs through some branches of the family. The other is a project aimed at rationalizing the care of children who are short and healthy. I’m working on that with some fabulous clinicians I met through my intersex work. Maybe someday I’ll write about those projects. And if no one wants to publish those thoughts, well, I’ll stick them here, too. And then go do more when I can’t write.

My mate said to me, about a year ago, that, if I ever wrote a memoir about my life as an historian, I would do for the discipline of History what the television show “ER” has done for Emergency Room Medicine: completely misrepresent it, and make young people want to go into it.

I guess I don’t care whether what I do is History. What an unbelievably good life I have. Without the cancer.