Tuesday, July 28, 2009

I've Touched and Seen What I Don't Have.

I am taking a Gross Anatomy course this summer. That’s right, I voluntarily signed up to dissect human bodies instead of enjoying the lovely weather for most of June, July, and August. (Well, semi-voluntarily. It’s required for my Ph.D. program – eep!) Dissection has been going well so far. I’m learning a lot, and am not nearly as emotional as I feared I would be cutting human flesh. (Sounds creepy, I know. But keep reading.) This is because my cadaver, once a human being in life, is no longer a human; it is simply the body that has been left behind. This person donated her body specifically for the purpose of dissection. She wanted to give my class the gift of her body after she, herself, was gone. What remains is a cohesive mass of molecules made up of carbon, nitrogen, sulfur, phosphorus, hydrogen, etc., slowly degrading (slower still, due to use of formalin preservatives). Eventually, just like all living things, her body won’t be housed as a single collection of particles anymore, for each particle will become something else, participating fully in the circle of life. It will be water. It will be air. It might be a mighty redwood. It could be a rainbow trout. Her body will be, eventually, part of an innumerous number of organic things, just as her body was, in its past lives, innumerous organic things as well. But until her body fully makes this transition, it is my group’s cadaver. I thought that I would feel guilty that I was performing heinous acts on a person; instead, I simply feel grateful to this body’s former owner, that she gave me the gift to see the locations, inside, where all of our own lives are lived.

That isn’t to say that I haven’t had any problems dissecting, though. Dissecting the hands was very difficult for me. (It is pretty fucked up to see your own hands cutting another set of hands, even though you know those hands cannot feel anymore. I had to leave the room for that one.) The face was also a little bit difficult (although not as much as the hands, inexplicably). And the abdomen – the abdomen – is frighteningly messy, and I felt I was going to be sick a few times. Today, though, I had a new kind of difficulty dissecting that wasn’t steeped, this time, in revulsion or shock value. It was steeped in longing, in wistfulness.

Because I saw the female reproductive system today.

I am a person with androgen insensitivity(AIS). Complete AIS, to be exact. This means that although I have typical-looking external female genitalia, I was born with no uterus, no ovaries, no Fallopian tubes, no female internal sex organs of any kind. I have XY chromosomes, so by the kind of chromosomes alone I possessed, I would typically have developed into a male. In the womb, all fetuses start out female. Female is “default”; if the fetus is destined to be a male, it develops male sex organs. These male sex organs develop due to the influence of androgens, or male sex hormones. (Think testosterone.) Males and females both possess “female” (e.g., estrogen) and “male” (e.g., testosterone) sex hormones – they just produce them in different quantities, with females making more estrogen (along with other female hormones we don’t want to get into right now) and males making more testosterone. Since the fetus is being supplied by the mother’s blood, and the mother’s blood contains low levels of testosterone, fetuses with XY chromosomes start to partially develop testes by pirating mom’s testosterone. (“Thanks, Mom!”) Eventually, the fetus will be able to make its own hormones. When this happens, XY-fetuses’ testosterone will finish the job, fully forming testes, the penis, testes, scrotum – the whole nine yards. (Although hopefully its length doesn’t end up to be nine yards – GAH! *faints*) Therefore, I developed no female internal sex organs, although I had partially developed male testes (= they hadn't descended).

Why partially developed? Well, complete AIS is characterized by a gene on the X chromosome that results in the fetus’s androgen receptors to not respond to androgen. (Appropriately enough, the gene affected is the “AR” gene, or androgen receptor gene.) So, I received testosterone from mom’s blood enough to form testes, and I was eventually able to make my own hormones, including testosterone in typical quantities for a male fetus. All good so far! But in order for hormones to affect the body, the body must have the machinery to be able to use them. The machinery to do this is “receptors.” Receptors are also molecules, just like your hormones themselves. Both your hormones and your receptors have specific shapes. Your hormones are able to do work after they are grabbed onto by a receptor. The receptor, after grabbing the hormone, will send out a signal to the body to do something specific. In this case, my testosterone molecules would typically have been grabbed by my androgen receptors, and my androgen receptors would’ve said, “All right body, we’re all good here. Let’s finish off these testes and start up on a penis and all that other stuff. Over.” And my body would’ve said, “Roger that,” and development would’ve progressed in the garden-variety way. Instead, the gene sequence on my X chromosome meant that my androgens couldn't grab onto the testosterone molecules my fetal body was so diligently making. The testosterone was there, and ready, and my receptors just weren’t able to do their trick. So no signal got sent out to my body to say, “We’ve got a future male, here! Get a move on!” Instead it said, “Well, I know we’ve got partially formed testes and all, but I don’t think this male thing is really happening. I guess we’ll just do the best we can with the hormones that are still working.” And those hormones that were still working were the female ones – the estrogens. Ironically, because estrogens were the only sex hormones that were able to work, my body developed in a “hyper-feminine” way. And actually, the testosterone that my body made was converted into estrogen - a process known as aromatization. There was no testosterone to stop my estrogens from going all-out, and so they indeed went all-out. This is why people with complete AIS generally have curvy bodies, including large breasts, large hips, and delicate bone and muscle structure. And, since testosterones aren’t working, this is also why people with complete AIS rarely get pimples (since testosterone regulates how much oil is released by glands in this skin…too much oil creates a perfect environment for pimples to form). Complete AIS individuals also don't have a lot of body hair at the armpits, legs, and pubic region, which may grow slowly as well. (Let's be honest - it pretty much rocks not to have to shave much, if you even choose to do so!)

So my body is hyper-female. Most places. Externally, my vulva looks completely typical. Inside, however, things are atypical. See, male sex organs and female sexual organs are created from the same developmental tissue. Internally, my body had already started to create testes. When my own body couldn’t start in on making the ductus deferens and all that fun stuff, it just stopped making anything. If my testes hadn’t started developing, it’s possible a uterus, ovaries, Fallopian tubes, etc. would’ve formed. However, humans can’t develop both sets of internal (or external) sex organs...this is why intersex individuals are not referred to as hermaphrodites. (Hermaphrodites either possess both sets of sex organs at the same time, both of which are fully functioning OR they possess one set of sex organs at a time, but can develop one or another at different times in their life cycles. Some animals are true hermaphrodites, but humans are not. In some of the medical literature, though, doctors refer to intersex people as “pseudohermaphrodites.” While that’s better than going with “hermaphrodite,” it’s generally regarded as a highly offensive term. Referring to individuals as “intersex” is acceptable right now, without any additional qualifiers. Leave well-enough alone!) So, since my internal sex organs went on a “male” path but couldn’t keep developing, they just stopped developing. I couldn’t pick up where I left off and continue developing female internal sex organs, nor could I scrap my testes and start over. It was game over at this point. However, since my external sex organs hadn’t developed yet, they could develop as female, typically and uninterrupted.

At least from the outside. The trick is that inside, the vagina usually leads up into the uterus, with the cervix as the junction in-between. I didn’t develop a uterus for those reasons mentioned above (as my partially-formed testes stole the show). That means that on the inside, my vagina doesn’t lead up into…well, anything. It is a “blind-ended” vagina – a vagina that ends in a pouch of soft tissue, to seal it off from the rest of my abdominal cavity. (Which, given the alternatives, I’m really, REALLY grateful for. If you’re unsure what I mean, look up “prolapse” – just DON’T image search! You’ll need brain bleach for sure.) This also means that my vagina is shorter than average length. Normally, the internal vaginal canal ranges from about 6-12 inches long, although there’s certainly human variation there – some shorter, some longer. (If your vagina’s length inside isn’t at a minimum of about 6 in, doctors often suggest vaginoplasties, or surgeries to lengthen your vaginal canal. The purpose of doing this is to ensure that you’ll have “normal sex.” This assumes, though, that the intersex person will be having penetrative sex {which also assumes heteronormativity…not cool}. Additionally, if you’re on the lower end and don’t opt for surgery, your vagina will lengthen once you begin having sex. But we’ll have separate discussions on surgeries and sexual practice later – this post can’t be packed with any more technical info lest it burst at the seams. You don’t want me to break Teh Internets, do you?)

In short, my body is not typical of either males or females, although I am always identified as female based on my external body. And today was the first time I felt like I was really missing out on something.

I’ve always felt that not having a period or having to worry about pregnancy were absolute positives. I’m not a big fan of either bleeding uncontrollably, or spending time with children, so missing out on these things were a-okay with me. But I questioned myself while doing the dissections. Because now I’ve seen and touched the parts of the body that I do not have but have felt (in that past) that I should. I held the uterus in my hands. I marveled at how impossibly tiny it was, and how it somehow managed to hold a several-pound fetus in there. (“It’s pure magic!” one of my TAs exclaimed. I’m with her on that one.) The ovaries, which never large in my mind, were still smaller than I expected as well. Looking safe and protected, nestled in a few layers of tissue. But the oviducts were what really got me. In junior high health class, picturing of an ovum traveling down the oviduct, I could hear foreboding music a la the beginning of Star Wars (the “Mars” movement of The Planets, by Gustav Holst...a seriously good work). “Oh, no, here comes the egg! This is your warning: DON’T GET PREGNANT.” I expected some hardcore, no-nonsense structure – just a thick, firm canal – taking the egg to its resting place to be fertilized or shed (in that lovely ritual called menstruation). But it wasn’t. It was actually beautiful. It was a pretty thick canal, but it wasn’t ridiculously firm, and it didn’t end bluntly in a no-nonsense way. It opened up into a funnel-shape, with all of these little protuberances coming out from the funnel. Sort of like a cornucopia with little arms that go all the way around. When an ovary releases an egg, the oviduct’s funnel sucks up part of the ovary and the little arms hold it in place, to ensure that the egg gets deposited in the duct. (The egg rarely goes other places since this method is so efficient, although it happens sometimes.)

Looking at the female sex organs, I questioned whether I had really missed out on something. Besides the bleeding. Besides the possibility (and sometimes worry) of pregnancy. Since I identify as female much of the time, I still sometimes feel that I’m an “almost-but-not-quite-female” [once again, another topic for another post ;) ] and connecting with the female form reminded me of this again today. That only partially described my feelings, though, and the part it described was relatively smaller. It just didn’t totally ring true for me. I stared at the structures, and tried to identify why else I felt this way, but nothing came. It wasn’t until I looked around at my classmates, amiably moving from table to table, pointing and identifying, that it clicked. Staring at the female form, I felt like I missed out on feeling “whole” – well, not so much “whole” as “wholly typical” – of having an easy, 1-2-3 sexual and gender identity. Which I did. Watching my fellow students in lab, I thought, “These women can look at some of these bodies and see all the structures that they have inside. These men can look at the rest of the bodies and also see all the structures that they have inside. There are no bodies here that, inside, look like me. What do I really look like inside?” I felt wistful. I walked around to all of the other bodies, hoping that one of them might exhibit some atypical form that more closely mirrored my own. Because the one thing – if nothing else – I have learned in taking this Gross Anatomy course is that structures, common structures, you hear about all the time, that you think you know and understand, look and feel nothing like you have envisioned. You are shocked to realize you didn’t know them at all before, really. They blow your expectations right out of the water. I knew I had no uterus. I knew I had no ovaries, no Fallopian tubes, no vaginal canal neatly leading up into the cervix, with a blind pouch instead. But I knew that I wouldn’t know what I looked like inside unless I actually saw it, in physical form, right in front of me. I tried staring at the female body, to mentally subtract away all the structures I didn’t have, but I knew that whatever I pictured would fall painfully short of the reality of my form. And I wanted to know. I wanted to see. I was jealous that these other students could identify with their like-sex bodies (assuming no other students were intersex, or perhaps transgender), could see themselves through the lens of someone else. After today, I still don’t know what I really look like inside, and that frustrates me to no end.

(And additionally, it was interesting I felt this way viewing only the female and not the male bodies. But again, a discussion for another time.)

Most of the time, I don’t emotionally trap myself into feeling bad because I’m not “100% Anatomically & Physiologically Typical Female” or “100% A&P Typical Male” – something I will never be. Conversely, this experience helped me realize that I won’t be able to connect with my body’s less common form simply by studying human bodies that are of typical form. While I’m more comfortable now falling somewhere along the sexual continuum, the desire to identify is still just as important to me as ever – maybe even moreso now that I’ve gained some peace, having mostly traded in self-delusion for self-acceptance. Now I’m hungry for self-knowledge. I realize that in order to do get that, I absolutely need to see bodies of people like me. There are just some exceptions you simply can’t make.

Sunday, July 5, 2009

What's Up With This Blog?

Hi, everyone! Whether you sought out this site or unintentionally linked to it (and found yourself saying "Huh? Intersex what?!"), WELCOME! This blog serves a few functions:

1) Education and awareness of intersex (e.g., what forms of intersex there are, how many intersex people exist, etc.)

2) Education and awareness of intersex experiences (e.g., testimonies in addressing intersex with clinicians, family members,friends, lovers; identity and perception {of self, of others, and by self}; emotional landscape of intersex people and/or their loved ones, doctors, etc.)

3) Introduction to intersex organizations and events, support groups, etc.

4) Address how intersex is depicted, explained, and perceived in mainstream media (e.g., in fictional television, in books, on talk-shows, etc.)

Despite the fact that I've known I am intersex since I was 14, I have not explored it nearly as much as I intend to. The general sentiment expressed by my clinicians was that my body was not simply private, but something that should never be discussed - ever. By anyone, to anyone, for any reason outside our family. PRETEND YOU ARE NORMAL AT ALL COSTS. This meant to go so far as to bring tampons to college when I had absolutely no use for them, don super-femme dress and makeup and jewelry for the every day (failed miserably!), and bemoan my menstrual cycle with other female classmates when I actually no idea what having a period was like.

Hearing time and time again that WHAT YOU ARE must never be spoken of made me feel monstrous and shameful of my condition. I was a closeted freak. I would never find romantic love, because how could I tell a future partner? I would never know if I would truly gain acceptance from my whole family, because only my nuclear family knew I was intersex. I wasn't sure how to perceive myself, how to act in public, how to dress, which bathroom to use...but couldn't explain my bizarre actions to anyone. When you are so uncomfortable with your body and sense of self, you just shut down. You tell yourself lies about who and what you are to make yourself feel better. Feel that you have a place in society, have a well-worn path to travel down in which your role has already been pre-planned for you.

Well, the well-worn path is crap. It's not fun, and I hate it. It's less a path and more a crater, swallowing you up and banishing all of your individuality to a dark corner to die. Each person is a collection of traits - some of them contradict each other, and many of them don't conform to our perceived stereotypes. ("THAT'S your favorite hobby?! But a gentleman/lady/elementary school educator/secretary/neurosurgeon/sex worker/florist doesn't do that!") These are some of the most beautiful qualities a person possesses - those that don't necessarily match up to your expectations, that (after the shock settles in) seem to embody that person most. Now I realize that, as an intersex person, it's kind of liberating not having a path to follow. But this liberation is more theoretical than actualized since I look like a female, and am thus expected to generally conform to my perceived gender role.

But more on that later. ;)

The reason I share this information is that due to the shame imposed by secrecy, I never fully explored my condition and the dozens of others under the intersex umbrella. What they mean. What our bodies are like. Why it's seen as a medical condition when our bodies are normal, natural, and beautiful as they are. How we feel about ourselves, others, and our societal perceptions. Now that I've come to accept my intersex, I'm trying to more fully integrate it into my life. And part of that process is accruing knowledge and gaining understanding into the biological mechanisms and emotional lives of intersex individuals, their loved ones, and their clinicians. Through my own process of self- and other- discovery, I hope to accompany you as you start or continue your own process, too. Let's help each other, learn from each other. If there's anything to take away from intersex, it's to challenge your assumptions and explore other viewpoints. Intersex has helped me become more open-minded in this way.

My posts will likely be sporadic and of varying length - some just a few words with a link to an article or website, others long-winded with lots of questions and ideas and opportunity for discourse. I am not promising to update on a particular day, or for a certain number of times per week because I don't want this blog to become a chore, another check off the to-do list. I want each post to come from a desire to write and share. Otherwise, it's gonna be reeeeeeeeeeeally boring for you, too. If I have more time and feel inspired, I might post a lot, and other times might go through a Blogger dry-spell. A little go-with-the-flow will be required.

But isn't that what this blog is all about anyway? ;)