MEMORIES AND THOUGHTS FROM ADULTS WITH DSDs

COLLIN STOLL

I was born in 1968 a fairly healthy baby. However I was challenged with undeveloped testes or hypogonadism and moderate hypospadias. Fortunately I was born to parents who, besides being compassionate and loving as most parents are, asked lots of questions and were thoughtfully critical about everything. They picked pediatricians that, while highly qualified, were also open-minded. I had my first surgery at four to expand the opening to my urethra. At the time the surgeon recommend prosthetic testes so that I would look more normal. My parents, aware of the dangers of any surgery, declined until I was at an age when I could make an informed decision. I waited until I was twelve and then only had one prosthetic put in. It was a fairly painful experience but my parents were very supportive. When I decided not to have another prosthetic implanted, they fully supported my decision. In my mid-teens I developed gynecomastia, male breast growth, due to taking depo-testosterone. Although my parents had instilled in me a strong sense of self respect and self love, being a teenager I was still embarrassed by my physical difference. I asked my parents and my doctor about breast reduction. My doctor recommend I wait until I was eighteen. My parents supported my decision but also recommended I listen to my doctor and give it some time. I did and, between graduating from high school and entering college, I had the surgery. Looking back I have no regrets, in part because it was my decision. As a young adult, I still had shame issues about my body: Was I too fat? Not strong enough? But these issues, I discovered, are endemic in the youth of our society. Through family, friends, lovers, mentors, therapists, and general life experiences, I learned to appreciate my body for what it is.

Esther Morris Leidolf

ESTHER MORRIS LEIDOLF

Regarding my parents’ role in my treatment, I realize now just how isolated they were, and how much they needed support that they couldn’t get. My mom advocated for me in ways that I didn’t know until much later, and she found her own strength to do that. My strongest memory is when my mom checked off “normal” for “periods/menstrual cycle” on a health form for camp one summer. I was outraged that she would suggest that, after all I had been through. When I asked her about it, she simply said, “Well, for you, honey, they are normal.” This was the first time I considered that I had some input in how “normal” is defined for my life and my experiences. It is also the foundation for keeping my sanity.

Lynnell Stephani Long

LYNNELL STEPHANI LONG

I can’t really blame my mother for allowing the medical profession to use me as a guinea pig. I strongly believe that my mother, a poor, black, single parent raising eight kids, did the best she could. I believe that she fell for the lies that the doctors told her, that they could “fix” me and make me “normal.” Whatever normal is.

But if I had one wish, this is what I would wish for:

I wish my mother had asked more questions, and done some research on her own. I wish she hadn’t taken the doctors for their word, and I wish she had listened to me when I told her what my desires were. I wish she was told that her child being intersex does not reflect on her as parent. That sometimes children are born different than how we have our hearts set.

Unfortunately, she put all of her trust in the doctors at the University, and prayed they could make her “son” into a male.

Maybe with more knowledge, patience, and understanding, my mother would have had the tools needed to be a great parent.

DAVID CAMERON

David Cameron

I wish my parents had known that lots of people are differently unique, that there are “non-traditional” sexes and genders among humans, just like in the rest of nature.

I wish they had known that over 300 species of animals have same-sex relationships.

I wish they had known that many humans, just like animals, have intersex anatomical variations.

I wish they had known that I identified with both of them. I wish my dad was complimenting me when he said, “You’re just like your mother.”

I wish they had known that it was okay for me to have feminine interests and activities and that not everyone is stereotypical.

I wish they had known that being intergendered was just as real (for me) as feeling like a boy or a girl; that a blend of energies, i.e., androgyny or being differently gendered, is associated with spiritual qualities and well-being; that being who I am was a gift to them, and not a detriment.

Cindy Stone

CINDY STONE

I uncovered the full story and the associated risks of my syndrome when I was 34. I have the complete form of Androgen Insensitivity Syndrome (also known as AIS, formerly called testicular feminization). My doctors knew that I was born with a DSD and yet, when my puberty failed to occur, all they said to me was “You can’t have a baby.” Despite the fact these physicians had ordered numerous medical procedures including a laparoscopic surgery, many x-rays, full blood work-ups, ultrasounds and chromosomal studies, they withheld the results. Instead, they told my family the chromosome and genetics tests they ran were all normal. They didn’t tell the truth because I was a naive young teen, from a very low income, unemployed family with poorly educated parents growing up in a “blue collar” city in New England and they judged us harshly. I wish the medical establishment hadn’t taken one look at my parents and said “we can’t tell these folks the truth. They’ll never understand!”

I also wish my parents had asked more questions and had pushed the doctors harder for the truth. They should have known there was more to the story and not taken the doctors’ claims at face value as they did. If Mom and Dad weren’t up to the challenge, they should have asked for help from counselors at my school or church, etc. There were friends and family they knew who could have been an ally to me and all of us learning more.

In my teen years my parents took me to the family doctor and he put me on a variety of hormones. I wish Mom hadn’t pushed me, “Keep taking these birth control pills, Cindy, and sooner or later they will jump start your period!” And oh, the other thing I wish I hadn’t heard from them: “there’s nothing for you to worry about, you can adopt children and live happily ever after.” Ugh! When you’re a teen and you think you are supposed to get married, have children and a house in the suburbs like all those 1960’s TV shows, the last thing you want are your parents saying is that it really doesn’t matter whether you can have your own kids or not. I wish just once my parents had said this was all pretty serious, and we should get you to a counselor and get you some more help.

I wish my parents had told me all they knew. You know, bite-sized nuggets of info would have been great—just as much information as I could process at any given point as a youth. They could have then waited for me to come back and ask more. As it was, I imagined things much worse throughout my teens and 20’s than what I now know is the truth!

Because I had never reached puberty and had not started a menstrual cycle, my father took the news as license to force me to have intercourse with him throughout my childhood and teenage years. He used my DSD status to hurt me badly! See, Androgen Insensitivity Syndrome often makes girls very tall and mature-looking at an early age. My father said it was “all my fault” for being so big and grown-up, and that he couldn’t help himself. And, he got me to believe his lies when he said no one would ever believe me if I told them that he was raping me. He said it was okay for us to do this because I couldn’t get pregnant and therefore there was no harm. An uncle molested me as well, and I just didn’t have the self-esteem to say “no” until I was in college. That’s when I found my voice, and finally said, “no more!”

It took a good decade in my 30’s, with lots of hard work in therapy with an amazing counselor, to undo the damage of my father’s deeds. But finally I have come to accept my status as a person with a DSD, and I slowly have become more openly gay in the process. Today, I know I am not a victim! I am a survivor and I have a great life now! I know that my childhood may have been awful, “but it’s over,” and so I strive to be upbeat. I live my life positively knowing that I was born to be a woman, just like my birth certificate says, and as all outward appearances indicate. I have always desired to be just that: a woman. I just took a more circuitous path to becoming a woman than others take.

I am most grateful for my hard work in therapy, a heightened spirituality, a truly loving partner and finding the support of my peers in my syndrome’s support group (the AISSG). Further, I am humbled, and in awe, of watching others tell about the experiences and challenges they have faced in their journeys to becoming more whole!

One of my favorite expressions comes from Simone de Beauvoir: One is not born a woman. One becomes one.

Bev Mill

BEV MILL

I found out at age 15 that I would never have children. My mother and I were told that I had a “deformed uterus and a small vagina that I might need stretched when I got married.” My mother has never referred to that day, or my condition. It wasn’t until I was 44 that I found the truth. I have Complete Androgen Insensitivity Syndrome. How good it would have been to my mother and myself to have some information that would have helped us through that trauma. This handbook would have helped us understand and accept. It took my whole life to do that.

Thea and Freema Hillman

THEA HILLMAN

 


I wish my mom had known how smart she was

I wish my mom had known that grief is too heavy a burden to carry on your own

I wish my mom had known that congenital adrenal hyperplasia was a gift that 
would make me an outsider, a community organizer, a runner, and a writer

I wish my mom had known that doctors don’t know everything

I wish my mom had known that despite what my dad said, 
it was okay to talk about what was happening and that she deserved support

I wish my mom had known that doing everything in her power 
to make me normal wouldn’t make me normal

I wish my mom had known that I knew how upset she was, 
and that I thought it was my fault

I wish my mom had known that facial hair on a girl isn’t the worst thing

I wish my mom had known it was okay that I was curious about sex 
before other kids

I wish my mom had known that it’s not helpful to put a kid on the 
Scarsdale diet even if doctors tell you your child needs to lose weight

I wish my mom had known that by raising me to be proud of myself, 
she gave me confidence to accept myself as different

I wish my mom had known that I needed support because 
being different is hard, even under the best circumstances

I wish my mom had known that accepting myself as different was the key 
to realizing that everyone in the world feels different

I wish my mom had known that calling myself intersex would be the key 
I needed to meet others like me, to see myself reflected, and to heal my shame

I wish my mom had known that there would be a community for me, 
people who would accept me just as I am, people who would consider me 
a teacher, a leader, an ideal lover, and people who would feel that 
by being myself I offer others a safe haven, a nest at the top of the tallest, lonely tree

I wish my mom had known that more than thirty years after my diagnosis, 
she would fall into the arms of a dancing man that wasn’t my father, 
and that she would finally cry her heart out

And that we would both be okay. More than okay.
          

 
 --Thea Hillman, What I wish my mom had known