I learned that I was intersex on October 31, 2019 at the age of 41. I always knew I was different and as a teenager I accepted the label of “lesbian” because it seemed to be the best fit with the information I had at the time-- but I knew deeply that it was not the whole story. I have explored transitioning to male at various points during my adult life, but always decide against that option knowing that this would merely swap which half of myself was seen by the world and which was suppressed. What follows is the story of how I discovered I was a person who is intersex.
The spring of 2019 brought me the gift of a mid-life crisis. I quit a job I loved and went to live at the nearby Buddhist monastery where I practiced regularly, with the intention of ordaining to become a monastic. Since everyone there wore the same robes and shaved their heads (and since one of the guiding principals of the practice was the dissolution of dualitic thinking) I had thought that the binaries of sex and gender would consequentially be irrelevant there. I was incorrect. The monastery was instead deeply divided by these traditional binaries, including the primacy granted to the males.
Ordaining seemed to mean abandoning either one side of myself or the other permanently. I realized my crisis could not be resolved there-- in fact, I could feel it deepen. After only a few months at the monastery, I left and began to couch surf among family and friends. I had begun exploring the identity of being non-binary in my mid-thirties, but then in early October of 2019, I embraced it fully. It seemed to be the best way to honor both the male and female aspects of my psyche. I told my closest friends that I was adopting they/them pronouns fully and asked them to start calling me by my chosen name, Cole.
The relief these changes brought to my nervous system was immediate but not entire-- there was still an unknown piece missing. Then came October 26th: Intersex Awareness Day. That morning, I went on Facebook and as I was scrolling through my feed I happened upon a post for Intersex Awareness Day. I hesitated before clicking to read it because I was in the deep habit of avoiding all information pertaining to the concept of “intersex” (even including nature documentaries when hermaphrodidic plants and animals become the topic). However, because my spiritual practice had deepened during my time at the monastery, I recognized my habit of avoidance as the urge rose up. And this time, I took a deep breath and I read the post.
As I read about what the word “intersex” means and the various ways a person can be intersex, panic set in. Instead of dealing with why I might be feeling panicked, I spent the next few days trying to distract myself with sex, alcohol, and weed. I couldn’t sleep. After a particularly long night, exhausted and rigid with fear and frustration, I made a phone call.
My mother is in the late-stages of early-onset Alzheimer's Disease, so I called my father. The exact question I asked him was “was I born with something extra?” And his response was “you know what? Yes. ...I think they called what you were born with a ‘pseudophallus’.” With that, my perception of the world seemed to physically slam 90 degrees sideways. While I remember that part of the conversation very clearly, what followed is more of a blur. Dizzy, nauseated, exhausted and sobbing, I was having difficulties processing this new information. There were moments that I seemed to be watching myself talking on the phone and not actually participating in the action.
My father confirmed I had one surgery he was aware of before being brought home from the hospital. Subsequent trips back to the hospital meant that there was a chance that other surgeries may have also occurred, but he maintained that my mother never talked to him about any of it. Through my shock, what I really honed in on was that neither he nor my mother ever told me this information; not even when I was having any variety of health issues with my reproductive and urinary systems. His defense was that he hadn’t even remembered this fact about me until I asked him the question that morning over 40 years later.
I spent the next several days with a hand-held mirror and the internet, in an effort to self-diagnose which of the different ways a person could be intersex applied to me. I also tried to retrieve my health records from my birth and childhood but to no avail. The hospital where I was born and my pediatrician’s office had no records on me because legally they only have to keep records on file for 30 years. There was also no mention of any surgeries I likely had as an infant in the file from the doctor I had as a young adult. It was inconceivable to me that this information was just gone, but it was.
I haven’t learned much about my own history but I learned a lot about how intersex people were treated. Since as early as the 1920’s, the medical system in the US has handled people who are intersex as patients with a condition that must be cured. They perform unnecessary “normalization” surgeries on newborns and infants under the pretenses that a human’s only purpose is to reproduce and that everyone should fit into the female/male binary. They strong-arm parents into consenting to these procedures by lying to them about the increased likelihood of reproductive cancer and other health issues, as well as prophesying the presumed social issues and subsequent psychological trauma of being “different.”
These tactics and surgeries are conducted under the guise of “do no harm” when in reality they are often anything but. And here in the year 2020 the fact that these procedures are not only legal but the norm is, in my opinion, a disgrace to the medical profession. In my case, my father believes I was operated on within three days of being born. He doesn’t know if they used anesthesia (which includes the risks of brain-damage or death for newborns) or if they cut highly-sensitive body-parts off of my defenseless newborn body while I was fully conscious. The doctors used their position of authority to convince my family to risk my well-being and possibly my very life all for the sake of being “normal.”
The removal of my pseudophallus left me with nerve damage to the clitoral nerve as well as scar tissue where my clitoris should be. Additionally my labia minora is underdeveloped either because of additional scar tissue or for natural reasons. However, since my labia minora is all but missing on the right-hand side, I suspect I may have had a streak gonad removed as well. Without my medical records, I will never know, and there are times when that fact infuriates me.
I also have a life-time of psychological issues including being diagnosed with gender dysphoria in my twenties. Since learning I am a person who is intersex, however, I realize that I don’t have gender dysphoria but instead that I’m actually perfectly cis-gendered-- my biological sex falls between male and female, and my gender mirrors that beautifully by falling between what is considered masculine and feminine. Our male-dominated, heteronormative society has the psychological issue, not me.
While many folx like me may be denied the knowledge of being intersex, other folx whose intersex traits are discovered closer to pubescence are encouraged not to tell anyone. Adult authority figures, including doctors and parents, tell these children that being different is so bad that they should live in fear of being discovered. They are essentially told to maintain their silence and embrace the subsequent shame. This is part of why the intersex community seems to be invisible-- we either don’t even know we are intersex or when we do know, we are directed to never let anyone else know.
That is why it is so important that Intersex Awareness Day exists. It gives a platform for the things folx who are intersex were told to never acknowledge. For folx hiding a part of themselves under layers of fear and shame, it’s a day to feel seen and to see others like you (even if you’re still maintaining your silence). Intersex Awareness Day offers everyone a chance to learn; to learn about themselves or to learn about their siblings in the intersex community. For me, Intersex Awareness Day started me on the journey to solving a life-long mystery. My hope is that by sharing my story I will encourage more folx who are intersex to do the same, or at least to help them know: you are not alone, my intersex kin.
Thank you for reading this, and I wish everyone has a happy and thought-provoking Intersex Awareness Day.
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