Eden's Story

[Received Nov 2003]

This is based on Eden's personal profile written in May 1998, a year after she started the N. American AISSG email discussion circle, followed by some additional material to bring it up-to-date.

My name is Eden and I am a 29 year old woman with CAIS. I always thought it was rather ironic that I was named Eden, that being the first home of man and woman... at least as far as the myth goes.

My folks did not find out about my AIS until I was 14. I had requested a shot I had heard about, from some girls I knew, that supposedly made you start your period if you hadn't already. I think it was just a major blast of estrogen. I don't know why I was so eager to start my period at 14. My half sister didn't start until she was 15... and that was too soon for her. Maybe I already knew something was afoot. Obviously, the shot did nothing for me. My pediatrician in Montana took some blood and the next thing I knew I was on a plane for Rochester, MN and the Mayo clinic. When my mother told me that we would be going to Rochester I remember being kind of excited... I liked the feeling of being special. I never really got alot of attention from my folks so I think I thought this would change that. My mom sat me down and in a choked up way she said (without looking directly at me), "It doesn't look like you are going to be pumping out any babies". This was devastating for me. I have always been a real kid freak, always the one who would rather hold a baby than do almost anything else. She had most certainly been told by the pediatrician not to say anything... a move the Mayo clinic would follow.

My stay at the Mayo clinic was a week long and the surgery was not particularly painful. I was spared any residents or picture taking or uncomfortable questions. But I was not told anything other than my ovaries were malfunctioniong and cancer prone. I remember being scared and excited about that. My parents were divorced at this time and my father was nowhere around. He was told the truth, however, and he told that truth... or what he thought was the truth, to my step mother. She was a nightmare... an alcoholic and a horrifyingly manipulative woman.

I had started having real problems after we got back to Montana. I was fighting constantly with my mother. My step dad was making inappropriate sexually charged comments to me. I was a wreck. I had no support. I was taken to a number of therapists.... but I had no idea what was really going on, so how could I deal with the root problem?

I ran away from home and moved to Mississippi where my father lived. One night my step mother came to town (they were divorced) and wound up telling me late one night that I had been lied to.... that what was really wrong with me was that I was half man/half woman. I freaked. I called my doctor at Mayo and told him that I was going to sue him for lying to me.... I was hysterical. I was flown back to Mayo's with my mother and told a little more truth in very scientific form. He talked about Muellerian duct regression factor and the like. I was not told about testes. I can not remember if I was told about XY chromosomes. I was told the term T-Femme, for Testicular Feminization. (Later, I would look up AIS in a medical library and find "Male Pseudo-hermaphrodite"... that was not a good day.)

From this point on I became a masterful liar/actress. I would tell people that I had had "a little cancer scare". I would work it to its fullest advantage. The ironic thing is that I was blossoming (thanks partly to HRT) and getting a ton of attention from boys and men.... actually, mostly men. Because I did not get alot of attention from my Dad and/or because I felt I had my womanhood to prove... I let alot of bad things happen to me, in fact I courted alot of bad things. I had a surgical procedure when I was 16 to widen the vaginal opening because I was having trouble having sex with my boyfriend at the time. I was also given a dilator and estrogen cream. I started having sex right away.... and I didn't stop. Only I wouldn't have sex with one guy... I had sex with all kinds of guys. I felt shitty about it but I couldn't allow myself to get close to one guy in particular.... I didn't like myself that much (understatement). I was suicidal at several points in my life. My father killed himself when I was 19. It was such a bad time. I felt like a freak and things were going so poorly on the inside even though the things on the outside were looking pretty good. I took up acting and got several roles on television and I was singing jazz in the clubs. I put out several CD's. But there was always this massive void.

I have had six major men in my life as partners and I have told every last one of them the whole truth.... except for the part about testes. I can't get used to that one. I say things like "gonads surrounded by presumptive tissue".... how do you like that one? The thing is that no one has ever had a problem with it.... either I choose extremely well or, and more likely, who gives a shit? I have begun to learn that the process of lying and hiding is so exhausting that you wind up wasting the precious little time that we have.

Sometimes you just have to jump off that cliff into the great unknown. There is a saying that is attributed to Jesus in the Dead Sea scrolls that has a very Buddhist feel to it that I like alot, it goes: "If you bring forth what is within you, what you bring forth will save you. If you supress what is within you, what you suppress will destroy you." That's where I am these days. I have a great relationship. I have recently moved back to Montana. I have given up alot of those dreams of fame and fortune and I am concentrating on being alive.... really alive.

There have been ups and downs in the [email discussion] circle but when you stop and think of it... what an amazing thing this is.... we have a collection of women here, many of them who have never seen or spoken to another living person like them before, who can now, finally, feel like they belong. What a gift. Thank you for listening.

In November 2003 she emailed to the UK group:

How are you? I feel great and life is very calm and lovely these days. I am well.... married with a brand new baby. Ben is wonderful and I was at his birth... I am breastfeeding him through induced lactation. With what I pumped and stored in advance he had only breastmilk for one month.... now he has breastmilk and formula. Things in my life are so satisfying now. Now all I have to do is learn how to enjoy it!

She agreed to have her material from 1998 used as the basis of her web story and also sent us the following statement that she'd recently written to sum up her current feelings about her condition:

I am a woman who happens to have Androgen Insensitivity Syndrome. It has taken me 20 years to get to the point where I can say that without shame or loathing. During my teen years I was diagnosed and was given a false story about my condition by the very people I should have been able to trust the most and was taught by that act to feel great shame. I no longer think about my condition with any regularity. But for anyone who cares to listen, now hear this: I am a woman who happens to Androgen Insensitivity Syndrome, and anyone who has a problem with that can kiss my seXY a**.

You can read the text of an emotional speech ("Finding One's Tribe" in ALIAS No. 13, Autumn 1998) made by Eden at the 3rd AISSG-USA group meeting in Chicago, Sept 1998, about what lead to her idea of forming an email discussion circle for XY women. See Newsletter (ALIAS).