Private Life: Look Inside
“All human beings have three lives, a public life, a private life, and a secret life.” Hamill added, “A private life is by invitation only. A secret life is nobody’s business.” — Pete Hamill
“You can’t be what you can’t see.” — Martha Popp
Background on the Series
For readers who missed the first installment of this series — I opened the last closet door to the public on October 26, 2023, Intersex Awareness Day, when I revealed — I’m intersex. I was born with Androgen Insensitivity Syndrome (AIS). Today, I invite you to learn about my private life.
A simple definition: Intersex is an umbrella term that describes bodies that fall outside the strict male/female binary. There are two types of Androgen Insensitivity Syndrome, complete and partial. My condition is the former (CAIS) and can be described as follows: Infants with complete androgen insensitivity syndrome appear to be female at birth, but do not have a uterus, fallopian tubes, or ovaries. Their testicles (gonads) are hidden inside the pelvis or abdomen. Breasts develop during puberty, but there is little or no pubic and armpit hair.
From The Last Closet Door: Act I: Open the Closet Door (Public Life)
The two quotes above express opposing viewpoints and values. Hamill’s quote speaks to the importance of delineating and protecting our three lives: public, private, and secret. Popp’s quote affirms the importance of being visible and open in the world. Both have served me.
As a survivor of childhood sexual molestation, a lesbian, and a recovering alcoholic, I’ve protected my private and secret lives until I was emotionally, mentally, and spiritually ready to open ‘a closet door,’ to reveal an experience of what happened to me, an identity, or recognition of who I am. This of course does not happen overnight. It required years of therapy, naming the trauma, overcoming denial, shame, and stigma; the grief of not being able to bear children, and share secrets when I was ready. Lastly, self-forgiveness, acceptance, and healing followed. Grateful.
Intersex Flag: Yellow has long been seen as an intersex color or to represent those who do not fit the binary. The purple circle represents the wholeness of the intersex community free from colors like blue and pink that are commonly seen as male and female, respectfully. — Schaller Desart, Nevada Today
As a person of a certain age, it’s critically important for me to live as authentically and congruently as I’m able. My life is no longer a dress rehearsal. It’s the closing act, and will be the epilogue of my story. I want my legacy to be a person who was perfectly flawed (the title of my memoir in progress), yet lived openly, with self-acceptance, and self-love.
For that reason, I’ve decided to tell my story, a monologue or play in three acts:
- Act I: Open the Closet Door(Public Life)
- Act II: Look Inside (Private Life)
- Act III: Clean Out the Closet(Secret Life)
The Dilemma
I’ve been struggling with writing this essay about this very private medical condition, and the emotional journey of my lived experience, first as an innocent child, assigned female at birth, second as an adolescent on the eve of puberty developing secondary sexual gender characteristics, and later, as a sexually active adult navigating both my gender identity and sexual orientation.
It’s also a story about a family genetic history. I had to decide whether I wanted to share personal medical information about other family members. Since the AIS intersex condition is inherited —I decided to talk only about the generation that preceded me — my parents and two maternal aunts, who I loved and respected. I hope I don’t cause any harm to the legacy of people I love. They are people who I loved unconditionally and loved me the same way. Grateful.
Lastly, and critical to the essay, I considered whether my intention was to educate the public on intersex identities and conditions, or tell my personal story. I chose the latter as my primary focus, yet I hope the resources I share in the next section and at the end of this essay may answer reader’s questions. This is your invitation to my private life.
I’m far from an expert on intersex medical and gender identities and conditions. The reality is — as a person of an advanced age— I’m still learning. Following is a foundation of terms and history from the book, Bodies in Doubt, An American History of Intersex, by Elizabeth Reis and FAQ from the Interactadvocates.org website.
History of Intersex: Defining Terms
Private Live: Childhood
I was born in 1950, the firstborn child to young parents, 19 and 17 years old. We lived in the Midwest, Racine, Wisconsin, nestled between two metropolitan cities, Milwaukee to the north, and Chicago to the south.
My parents rented their first home, and both worked to save up to purchase a house. They already had two girls, my sister Roz (my first friend) and I, and eventually raised six kids, five girls and one boy, in the home they purchased and remained until the end of their lives.
They were hardworking, blue-collar, middle-class people, Dad with a high school education, and Mom never graduated. Despite their lack of formal education, Dad spent most of his working life as a custodian and trainer for the custodial staff for the Unified School District of Racine, Mom worked in a small motor factory, Motor Specialty, as an assembly -line supervisor.
Like most families in the 1950s and 1960s, we had a family doctor, who did everything from delivering us as babies and caring for our parents and their kids throughout our lives until he retired. We considered ourselves lucky to have a great doctor, Dr. Scheible. Dad would often tease Mom, that she had a crush on the doctor. He gave our family the best care possible representative of that time and place.
At the age of four, I experienced an inguinal hernia. An inguinal hernia occurs when tissue, such as part of the intestine, protrudes through a weak spot in the abdominal muscles. The resulting bulge can be painful, especially when you cough, bend over, or lift a heavy object. However, many hernias do not cause pain.
During the surgical repair, it was discovered I had undescended gonads. The condition in 1954 was diagnosed as Feminizing Testes Syndrome, an inherited condition. Now it’s diagnosed as Androgen Insensitivity Syndrome. Infants (or children) with complete androgen insensitivity syndrome appear to be female at birth, but do not have a uterus, fallopian tubes, or ovaries. Their testicles (gonads) are hidden inside the pelvis or abdomen. Breasts develop during puberty, but there is little or no pubic and armpit hair.
Inguinal Hernia
It was later revealed that my mother’s two older sisters, Dorothy and Betty also had the same condition and were unable to have children. Dr. Scheible referred my parents to Milwaukee Children’s Hospital to get the care I’d require as I aged and a probable surgical intervention during puberty to prevent an imbalance of secondary sex characteristics.
This began a series of trips to Milwaukee Children’s Hospital as a child with my parents. The early years my parents didn’t have a car. We’d take the North Shore Train that traveled from Chicago to Milwaukee, or a family member or friend would drive us. Often, we’d be asked to take glass milk bottles with urine collected from me for testing.
Milwaukee Children’s Hospital (Circa 1960s-1970s)
I still have vivid sensory memories of the hospital including, the antiseptic smell, hallways with health posters on the walls, doors with frosted glass windows to examination rooms, terrazzo floors, and a sunny children’s playroom. Most vivid, uncomfortable, and scary, was being physically examined and digitally penetrated by all-male specialists, doctors, residents, and interns, circling the examination table. Often they would have conversations or ask questions of me, which added to the discomfort. Some would ask questions of me for which I had no understanding of sexual maturation for my young age.
There was at least one overnight stay in the hospital as a child before my surgery at the age of 14. I have no recollection whether my parents remained at the hospital. I suspect they returned home to care for the younger children. The beds were steel cribs, and if my memory serves me, I was restrained, so I wouldn’t get out of bed without assistance by a nurse.
As traumatic as the examinations were, plus the restraint during the hospital overnight stay, the most stigmatizing experience was the naked photos taken of me pre-puberty, probably at the age of 10 or 11, for the medical journals. A black rectangle would block my eyes.
A note about my parents: First, I always experienced my parents love and care as a child regarding my medical condition, however, I also sensed their discomfort and probable shame that they passed on this genetic legacy to me. It was also a time when doctors and hospitals held lots of power and parents would defer to the recommendations the doctors gave.
I don’t know what conversations my parents had with each other, though they shared very little with me other than when I became a teenager, I was told I would have surgery and I would never be able to bear children of my own. Once, my father in an attempt to make something positive out of my condition, said something to the effect, “Honey, at least you won’t have menstrual periods.”
Yes, at the age of 12, in a conversation in my bedroom with both parents sitting across from me on my sister’s bed, it was my father who shared the proverbial ‘birds & bees’ talk, while my mother remined silent. The ‘talk’ was totally from the male perspective, in how I needed to protect my virginity from the sexual advances of young male classmates with strong urges and as he described, “Would want to get in my pants!” Oh my!
Private Life: Adolescence
I was 14 in 1964. During that time, an adolescent had no ability to make medical decisions for themselves about their own bodies, or their voices even considered by the medical care providers or families. As mentioned earlier, my parents deferred to the recommendations by the doctors. I simply learned that during the summer of my fourteenth year, I was returning to Milwaukee Children’s Hospital for surgery. Years later after I requested my medical history, the surgery was a gonadectomy.
What I remember from that time was an understanding that I would be hospitalized for a few days, have surgery, and return home to recover. That summer, I had a pass for a few weeks, and was only responsible for minimal chores as I recovered.
To my parent’s credit, as an avid reader, they encouraged me to select new paperbacks and magazines to bring to the hospital. I was reading science fiction and fantasy and read some of the most famous dystopian novels of the time. In 1964, I was also a Beatles fan and remember bringing teen fan and rock ‘n roll music magazines with me to the hospital.
Again, pre-surgery I was examined wearing a gown without underwear, often digitally by a group of male doctors, residents, and interns when they made rounds. I felt like my body had no protective boundaries. Sometimes an intern would visit alone and ask me a series of medical questions about my body and condition that I was literally unprepared to answer.
I remember being wheeled in the OR, and given ether as an anesthetic, fighting nausea, counting backward until I was unconscious. When I woke up in my room after surgery, I remember my parents sitting one on each side of me. It was comforting as I recovered from the anesthetic and surgery. We didn’t talk much, they’d ask if I was in my pain, was thirsty, and warm and comfortable enough. There was no conversation regarding the emotional experience of my hospitalization or feelings about my AIS condition.
Adolescence was a difficult time for me as it is for most people of that developmental stage. Yet for me, it was complicated by my relatively rare medical condition. At a time when young people often feel different and don’t fit in, when they want to experience being accepted by their peers, my experience was amplified.
Since I didn’t have a lot of information about my condition shared with me by my parents or doctors, other than the exams I experienced and the questions asked by medical providers, I became obsessed as a teen with how my body looked, the lack of pubic hair, large breasts with small nipples, and an obsession with whether I was growing facial hair like a male.
Private Life: Adulthood
If my memory serves me, the surgeon and urologist (a doctor who has special training in diagnosing and treating diseases of the urinary organs in females and the urinary and reproductive organs in males), Dr. Hodgson from Milwaukee Children’s Hospital recommended to my parents that I see a gynecologist. My memory is a little foggy, and may not be accurate. The gynecologist he referred me to had an office in downtown Milwaukee. I don’t remember my mother driving and accompanying me, so I guess I must have taken the Wisconsin Coach Lines Bus on my own and walked to his office.
The purpose of the appointment was to prepare me to have sexual intercourse with a future husband and for his enjoyment. A characteristic of AIS, is a short vagina with virtually a dead end. To give a future husband pleasure, I would need to elongate my vagina. I was given a wooden dildo to use, probably 4-6 inches long with a small handle. I was instructed on how to use the dildo. One regret, is that sometime over the years, I lost track or disposed of it and wished I had that intimate relic of my adolescence today.
This experience was just one more example adding to my lifetime body dysphoria:
Body dysmorphic disorder (BDD) is a mental health disorder. If you have BDD, you may be so worried about the way your body looks that it interferes with your ability to function normally.
The way I coped over the years, included compulsive eating habits, using food, not only to soothe and comfort myself, but create a physical boundary to protect myself from unwanted sexual touch. I was never offered talk therapy, given my medical history, or information about my condition until years later when I requested it and received a one-page summary.
For the rest of my life, including today, it’s often up to me to educate healthcare providers when I provide my medical history of surgeries and medications, including years of estrogen and progesterone hormone therapy, etc. Most medical practitioners receive little training or information about intersex conditions.
The biggest hurdle I encountered as an adult was becoming sexually active. Gratefully, my first sexual intercourse partner was sensitive; he was my first love, and became my husband. My journey of exploring my gender identity and sexual orientation continued as I came out as a lesbian. I’ve been grateful for all my intimate partners with whom I shared my condition, who accepted and loved me without judgement.
Next up in this three-part series, The Last Closet Door: Act III Clean Out the Closet (Secret Life). You’ll have to wait until Intersex Awareness Day in 2025 when I share the healing work I’m doing in therapy addressing the trauma, shame, and stigma growing up.
Thank you for reading, and I hope you’ve learned something about my private life and those of us who fall between the binary polls of male and female as intersex.
Photo Credits: The purple and yellow images are from the Interactadvocates.org website
Related Reading from Mixed Metaphors, Oh My!
The Last Closet Door: Act I (includes additional links to intersex information, books, resources, and videos, including Ted Talks).
Additional Intersex Resources & Reading
Online Resources
Books from My Library
Bodies in Doubt: An American History of Intersex