Treasure In Us – Monica’s Story

Here is another incredible story from my “Treasure In Us” project. In case you are just chiming into this project, I’ll fill you in. I have been interviewing people with amazing stories. People like you. We all have these stories tucked away in our hearts, different than one another yes, but none-the-less powerful and world changing in its own way. I had the incredible honor of interviewing Monica who wanted to tell about her life as an inter-sex individual. Please read on til the end. She is remarkable in every way and has such powerful truths to offer the world.

HER LIFE : Monica is a kind, snarky, hilarious and sweet individual. When I’m with her I can spend one moment laughing at her jokes, and the other moments being wowed by her depth of heart. This girl just pulls you in with her authenticity and kindness. Monica is also an amazing equine veterinarian by trade. She loves to ride her horse and spend time with her two amazing rescue dogs (I got to spend a bunch of time with them, they are literally the sweetest dogs I’ve ever met). She enjoys good wine, a good laugh, and the not infrequent Harry Potter or Twilight marathon. Monica lives a very normal life, but has an astounding story to tell that makes her even more unique and beautiful.

MEET MONICA:

HER STORY : While she appeared like a physically typical female at birth, Monica was born with an incredibly rare condition called 17-beta hydroxysteroid dehydrogenase-3 deficiency (aka 17-beta HSD). Due to this condition, at the age of 14, when most kids her age were going through puberty, Monica’s body didn’t respond as expected. Hormonal imbalances and the 17-B enzyme deficiency led to differences in how various physical characteristics matured. 17-beta HSD falls under the umbrella of intersex conditions, or disorders of sexual development (DSD’s). For those of you who are unfamiliar with those terms, ‘intersex’ refers to variations in sex characteristics, including chromosomes, gonads or genitalia that don’t allow an individual to be distinctly identified as either male or female. Statistically, intersex conditions occur in about 1 in every 2,000 births. While there are many conditions that fall under this umbrella, Monica’s particular syndrome is among the more rare ones, with no published rates of occurrence in the US, and a published rate of 1 in every 147,000 in the Netherlands.

Monica’s genetic tests revealed that she had two different mutations of the causative gene; one that was known, and one that has never been seen before. In Monica’s case, the onset of symptoms and characteristics that pointed to the presence of an intersex condition didn’t occur until the age of puberty. After multiple doctors, a barrage of diagnostic tests and countless visits to various specialists, the information was compiled and the intersex diagnosis was given. In addition to the hormone imbalances, there were chromosomal abnormalities and physical changes that were not typical for females of her age; combined, these things confirmed the diagnosis.

Remembering the moment she received the news, Monica states: “When I first found out, I didn’t really know what to feel, I was kind of numb. I cycled through a lot of different feelings…fear, disbelief, anger…I touched on a lot of things and most of them were dark.“This was the beginning of a long, rough, and unpredictable time in her life. The doctors started suggesting “corrective surgeries”, both to make the outward appearance more typical, and to remove internal structures that had the potential for becoming cancerous in the future. Being told she needed “corrective surgery” made her feel like she needed to be fixed, that there was something wrong with her and the way she was born. They asked her questions like “would you like to be male or female”, which may seem relevant, but really affected her from a mental standpoint, because she was raised as a girl, she felt like a girl– why would they ask such a question? For a 14-year old mind, it was too much to process and ever hope to understand at the time. These initial moments caused deep wounds that remain now as battle scars. At that time, she felt like she was born as a mistake or a freak of nature–which of course could not possibly be more opposite to the truth.

The surgeries didn’t stop after the initial 8-hour procedure. A number of complications caused her to keep going in and getting painful surgeries over the course of the next ten years. The surgery count started piling up until, at 24 years old, she had undergone 14 painful procedures in an attempt to “correct” her. “In the midst of all the surgeries,” Monica said, “predominant feeling among everything was pain, both physical and emotional. There was physical pain like I have never known and can’t even describe, but emotionally I was a mess too. I became very good at hiding feelings and avoiding anything that reminded me of it all. I was a freak, and I felt that the only way to survive was to wear a mask.” To cope, Monica poured herself into her academic studies as well as sports while she was in high school, but admits she was deeply depressed throughout that time. She felt like no matter where she went people would see her as a freak if they knew the truth. Just like everyone in this world she desired companionship and love, but felt that there wouldn’t be anyone out there for her that would accept her the way she is.

She shared a story of when she was attending college to be an equine vet that was deeply connected to her own life. A horse was brought in to the vet office at her university with an intersex condition. The owner of the horse had told the staff there that if they couldn’t correct the gender to just “put it down”. That night, Monica said she went home and cried herself to sleep. Her worst fears, the fears of rejection and shame, were being amplified before her in the eyes of this horse’s owner. The horse was unwanted and seen as a mistake that needed to be fixed. If it couldn’t be fixed, it wasn’t worth anything to the owner; it would be better that it had never lived.

At the age of 24, after the original diagnoses and surgeries, she was referred to another doctor whom in Monica’s words “saved her life”. When they met, this doctor didn’t approach her with the same mentality as the others had in the past. Instead of another take on how to correct her, she asked a simple question: “What do you need? What can I do to help you?” The question was freeing. Monica finally felt that she didn’t have to be someone she wasn’t originally created to be, and she had an advocate in the medical field that would listen to her.

Over the next year, with the help of her new surgeon, Monica had three more surgeries, and unlike the last 10 years, her pain was eliminated. She no longer had to live in pain, and more importantly, there was not more pressure to be “fixed” or “corrected”. She didn’t have to question who she was born as. She could embrace it, own it, and be released from the expectation of other people. Monica tells it like this: “Meeting the doctor who helped me in the end absolutely saved my life. She gave me hope that I could be me. And the absence of physical pain was a major plus. I still had the emotional damage to deal with…but physically, I was as pain-free as I had been in 10 years.”

I asked Monica what she would tell her teenage self if she could travel back in time. She said that “…it would probably be some cliché thing about not giving up, that it’ll get better, that I’ll survive… Chances are it would be a short discussion though. My teenage self wouldn’t listen.” She also stated that she would push for a far better alternative than corrective surgery, one where she understood that she could truly live the way that she was created and, most importantly, that there is nothing wrong with that.

HER LEGACY : As someone who was previously oblivious to the details of intersex conditions, I asked Monica what she wanted those of like myself to hear from her. Her response was simple: “Just treat us like you would anyone else. I’d be happy to discuss things and answer questions people may have… I’d rather people know about them and understand than wildly speculate and avoid it all. Stigma and stereotype don’t help anyone.” She then added: “Living as an intersex individual now is very much like living as a non-intersex individual! I eat, sleep, go to work, ride my horse, etc! I’ve finally settled into believing that I don’t wear my condition on my sleeve, or tattooed on my forehead. I’m free to be me and that’s ok. I enjoy talking about it occasionally, and have even spoken to various groups and schools. My goal is to live with this as a part of who I am instead of being everything that I am.”

Monica hopes that her story is able to reach others who also have been born with Intersex conditions or those who feel the pressure of becoming someone they’re not. As a parting note, she told me that “…one of the biggest things I’d like people with an intersex condition to know is that not all doctors are bad. So many of us harbor bitterness and anger for surgeries and treatments that we don’t think were necessary. However, I know from personal experience that some are truly looking out for us. Staying angry helps no one. Working with them to help people with DSD’s is way more important. “

Upon hearing Monica’s story I am BLOWN AWAY at how beautiful a person she truly is. She has survived so much and has risen out of her circumstances carrying vast reserves of strength, grace, humility, and honesty. She is one of the most amazing individuals I’ve ever encountered, not just because of her amazing story, but because of how she resonates with a kind and gentle spirit who never fails to make me laugh. She has one of those attractive personalities that you could never tire of, and I feel blessed beyond measure to know her.

Monica, you are such a rare and precious treasure. Thank you so much for sharing your story.