From: Narrative Inquiry in Bioethics
Volume 5, Number 2, Summer 2015
pp. 103-106 | 10.1353/nib.2015.0053
My story is one of the threads woven into the tangled skein that is my family. At 23, my mother was straddling that bridge between youth and adulthood. I was her first child. Her younger brother had died tragically, and soon after, their father’s successful barbershops began to fall apart. I never met my uncle, but they say I’m his spitting image.
I was at my pediatrician’s office for my scheduled check–up. As the doctor’s eyes scanned my chubby squirming body, she paused when she reached the crevice between my thigh–rolls. She didn’t know quite what to make of what she saw. She scribbled a referral. “They’ll just take a look,” she told my mother.
When the doctor inspected my labia at the hospital, he knew almost with certainty what he was looking at but didn’t yet say anything to my mother. The data confirmed what my pediatrician feared: My chunky baby body appeared female on the outside but the blood tests suggested otherwise. When they were finished with their tests, the doctors sat my family down and gave them the news.
6/6/86—Informant: Mother and grandmother Immediate Complaint: Abnormal genitals Present Illness: Jennifer has been considered to be entirely well until exam last week by pediatrician who noted enlarged clitoris and small vaginal opening. Female Genitalia: Clitoral enlargement of 1.5 cm. Sex assignment as a female is entirely appropriate.
4/13/87—Dear Mr. & Mrs. Pagonis–I am attributing her elevated blood pressure to being somewhat fearful in our exam room. Admission date: 10/27/90 Discharge Date: 11/1/90 Attending Physician: Dr. B. Hospital Course: patient underwent a clitoral resection and recession without difficulty.
8/28/1997—Jennifer is an 11-year-old. She would like to have further corrective surgery and wanted to know if it was appropriate to start estrogen replacement at this time. Dr. F would like to do a perineal surgery to correct Jennifer’s problem with urination. At the same time, he is considering doing a vaginoplasty. We discussed with Jennifer the fact that her gonadal development was not normal as a fetus. For that reason as well, and the risk of developing cancer, her gonads were removed shortly after diagnosis. She was told she would not have periods and she would not be able to reproduce. We assured her that she would be able to have normal adult relationships. Jennifer agreed to start an estrogen therapy to increase breast tissue. Jennifer’s mom should go ahead and schedule corrective surgery as desired by Dr. F and herself.
When other girls asked me in adolescence, “Did you get your period?” I’d make up stories because I desperately wanted to be on that journey with them. This knot of lies was spun to cover up what my mother had explained to me when I was a child. “You had cancer in your ovaries when you were born,” she told me, “so the doctors needed to remove them. You won’t get a period like mommy or be able to have children.” I believed her.
Ten days before my twelfth birthday, my endocrinologist scheduled me for a surgery. The day of the surgery came and I was being prepared for anesthesia. The doctors came into the room to tell me what was going to happen next. “We noticed that your vagina is smaller than other girls’. While we’re in the operating room fixing your urethra, we can also make a small incision in your vagina to make it larger. This way, you’ll be able to have sex with your husband when you’re older—Does that sound good?” I looked at my mom, who was in the prep room with me for this and wondered how to answer. I was only 11. I let out a shameful, “Yes.” “Good then, we’ll get that all taken care of for you as well during this procedure.”
He turned to my mom and said, “We’re gonna take very good care of your daughter Mrs. Pagonis.” With that, he and his colleague left the room. I looked at my mom lost in thought. She noticed me and said, “Everything is going to be okay hun, trust me.” When I was finally in the operating room (OR), the lead surgeon told me to think of my favorite place in the whole world. “Did you think of your place?” he asked. I nodded. “Now think of Disney World and count backwards from 100.” I twirled down the steps of the Magic Kingdom as I fell into a manufactured sleep. When I woke, I was no longer a child.
A doctor and a group of residents came into my room. The doctor lifted my hospital gown, moved my sheets, coaxed my tense legs open, and examined the surgeon’s craftsmanship. My mom eventually came back to the room. She tried to move away the hair that was now stuck to the sweat that had beaded up on my forehead. “What’s wrong hun?” she asked me. “Nothing,” I said quietly.
3/6/1998—Record of operation - Preoperative Diagnosis: [blank] Postoperative Diagnosis: [blank] Operative Technique: The patient is a 12–year–old female who was noted to have a variant of male pseudo–hermaphroditism that is testicular feminization syndrome . . . after . . . obtaining informed consent, she was brought to the operating room. . . . Once it appeared that we had adequate size and this easily accepted an index finger, we then proceeded to perform our flap anastomoses.
When the time came to take a bath, I made the water as hot as I could tolerate and began the process of adjusting my body to the temperature of the water. With weak and shaky muscles, I began the lengthy process of settling in. Every movement was done in the most cautious way possible—it felt possible to split open.
I eventually slid down and let the warmth envelope me. I began to gain a sense of what they had done to me. I felt crunchy and raw. I could feel the ridges of stiches and soft flesh bulging between them. I was queasy, but I couldn’t help but touch the places where doctors had cut parts of me away. I removed my hand and returned it to the surface of the water and decided I would not return there.
I went through the rest of junior high and high school avoiding the questions and myself. I didn’t want to know. This worked until I began dating someone and we tried to have sex for the first time. My parents told me I was normal and my doctors told me no one could tell the difference between me and any other woman.
The first time we had sex, it wouldn’t go in. The second and third time was the same. Eventually, we were successful but it hurt. Real bad. I blamed myself. Shame and denial go hand–in–hand. During sex I would silently cuss out God and go through the ways one could kill one’s self. I did what the surgeon told me to do before surgery and went to some other place because trying to feel nothing felt like the only way out.
One day in the student center, of my university, I saw a group of students in the café. I knew I wanted to become friends with them. But I feared their rejection. I was so different from them. They, obviously queer, did not try to conform. Seeing my antithesis made me yearn to be amongst them—without even being certain what or who they were. Maybe John Money’s argument that plasticity lingered longer for intersex children was right. I left the student center without saying hello.
I didn’t know at that point that I was intersex. Dr. Money’s protocol was working. My diagnosis was a secret and I believed the lies they told me about the surgeries and even thought of myself as a cancer survivor. Sparked by the feminizing hormones I began taking in fifth grade, my sexual identity seemed “normal,” that is, heterosexual female, which satisfied my endocrinologists and family.
I appeared to be a success. I was the first person in my family to attend a university, was in a long–term relationship, and I had two decent jobs. Yet ever since junior high, I felt different. Just because no one told me the truth doesn’t mean I never felt the effects of their lies. In trying to protect me, they made me feel ashamed and isolated and the stress and trauma from those surgeries left lingering severe effects. As Dr. Bruce D. Perry said, “[Even] if you take all of your money and dedicate it to treatment you can’t build in things that didn’t grow in the first five years of life.”
While sitting in a Psychology of Women class the life they built for me teetered when the professor put up a PowerPoint slide, titled: “Androgen Insensitivity Syndrome [AIS].” Bullet points like infertility and amenorrhea, things I knew to be true about myself, were listed above a bullet point that stated women with this condition were genetically male and had XY chromosomes.
I called my mom and asked her, “Mom, what do I have?!” She opened some referral paperwork she just received from Children’s Hospital after I turned 18. “It says, An–dro–gen In–sen–sitivity” she managed to get out before I hung up the phone. I cried hysterically, alone in my dorm room bed, until I got online and did some research.
3/7/2000—We then spent most of the time speaking with Jennifer as she was told that she did not have ovaries or uterus or fallopian tubes and she would not have her menses and she would not be able to bear children. We did assure her that she did have a vaginal opening so she would be able to have sexual activity. It was explained to her that the vaginal opening ended in a blind pouch. Jennifer did not have any further questions at the end of our meeting.
I spent a lot of time online researching AIS. It didn’t take long to find an online support group. I found a community of folks with similar experiences. I realized that almost everyone had also been told they were born with “cancerous ovaries”! I learned this was a lie doctors told our families instead of telling them we were born with undescended testes. Almost all of us had our internal testes surgically removed without our consent. Without them, almost all of us were put on hormone replacement therapy to kick start our puberties. We almost all told similar lies to our friends in junior high and high school when asked the dreaded question—“When did you get your period?”
Some of us had other more unspeakable things done to us. A few weeks went by, and my Psychology of Women professor invited an intersex speaker to present. The speaker introduced herself as Lynnell Stephani Long and she was charming. I listened with a frozen gaze and tear filled eyes, while I tried to become invisible.
After class my professor—who I disclosed to a week prior—invited Lynnell and me to eat pizza. I told Lynnell parts of my story, the parts I knew from connecting the dots over the past few weeks, and then she asked me a question. “Have you said that you’re intersex yet?” she asked. I hadn’t. Intersex didn’t sound normal. “No” I replied. “It’s important to say it. Go ahead, say ‘I’m intersex.’”
I hesitated. I didn’t want to be different. I wanted to blend in. I wanted to be normal. I wanted to wake up from this bad dream. “I’m intersex,” I mumbled. “What? I can’t hear you,” Lynnell said with a smile. “I’m INTERSEX.” “There you go. Next step for you is to get your records.” I read about that on the support group. Many people told stories of lost records or records that were burned in a fire.
The first thing I read in my medical records was 46, XY male pseudo–hermaphrodite. My ears burned. I wanted to beat those words until they admitted they weren’t true. I called Lynnell in tears. She stayed on the phone with me while I read the rest. “Breathe,” she told me. “I’m here with you.” A few pages later I saw the documentation of my second surgery. It was 1990. I was four. Perry argues that children are most vulnerable to trauma during this period, when their brains develop 90% of their capacity. That’s the moment I realized that the reoccurring dream of waking up on a gurney with blood soaked gauze between my legs wasn’t just a nightmare but a memory.
I also learned that when I was 11 the surgeon did much more than work on my urethra. He constructed a crevice and hole that mimicked those in the pages of his textbooks—but didn’t look like a vagina. I hung up and made a promise to myself: I was never going to tell anyone else what I had just found out.
Soon after making that promise, I met a girl and fell in love. As she held me, I told her bits of my story each night and to my surprise she didn’t run away. She made it feel safe to tell others and in 2008, while presenting my undergraduate thesis, I told an audience which included members of my family. It was the first time I told them everything I knew. Our skein felt a little bit more complicated, but tighter that day.