Why I associate Garth Brooks with my vagina - Living with DSD

Let me preface with a warning.  This blog post is deeply personal.  I held nothing back, so please read with understanding.  

It's hard to put into words what it felt like to go to my first AIS/DSD conference, so bear with me as I try to articulate my state of mind going into this. In order to really make you understand what it was like for me, you need to know my story.  Let me go back, if I may, 16 years.

In 1998, I got sick.  I lost weight, I couldn't keep food down, I was miserable. I was taken to the doctor, where a CT scan was done. As it turned out, I had a stomach parasite.  Easy enough to fix, but they also discovered a mass in my lower abdomen.  The doctor asked my mom if I had begun menses.  I hadn't.  It was my secret.  I used to carry tampons in my bag in case I got it, and so I could give them away if another girl needed one.  Deep down I guess I knew I was different.  After the stomach parasite was cleared up, I was taken to an OBGYN.

I waited in the lobby, legs clinched together tight, knowing what was coming.  I had never had anyone looking at my lady bits up close.  I was mortified at the idea, and even more mortified at the idea that something could be wrong with me. The time went by so slowly.  I sat in the old musty waiting room of the Talihina Indian Hospital counting the perforations in the ceiling tiles. Anything to take my mind far away from that place.   I don't remember every detail about the appointment, but I do remember what they did to me and the overarching theme of what they seemed to think was a valid diagnosis.  I was taken into a small exam room.  It was painted a light blue color with diagrams of reproductive organs posted on the walls.  Oddly, the most vivid detail I remember was the collection of posters on the ceiling to keep one entertained while being poked and prodded in their most secret of places.  As I sat down to take off my pants, the paper crinkled beneath me.  I put the gown on and laid back on the table, awaiting the doctor and nurse.  Tears slowly streamed down my boyish face.  They wouldn't let my mom in the room because it would be too crowded.  I was a little thankful as I didn't want her to be present for the embarrassment I was about to endure.  In his middle eastern accent, the doctor told me to focus on the posters on the ceiling.

Can we discuss the awfulness of this?

 I shit you not when I say that I'm pretty certain these are two of the exact posters on the ceiling that day.  That's right.  I will forever associate Garth Brooks with my junk.  As I laid on the table, my knees were tight together.  I was shaking, crying.  I didn't want this.  The doctor came in and gave me a couple of taps on the thigh to indicate what he wanted me to do.  He tried inserting the speculum.  The cold steel ripped through my labia like a cold knife.  That was as far as he got.  He told me I was making things difficult, so he would have to do a digital exam.  So, the doctor hands the nurse the speculum, and with one hand on my knee, inserts three fingers into my vagina. There was no warning, there was no foreplay, there was nothing but a sudden thrusting of three fat sausage fingers rooting around inside me.  He pointed his fingers upward and pressed down on my abdomen, declaring to the nurse that it seemed like everything was there. They left me to get dressed. I sat there wiping up my own blood off the table, embarrassed, ashamed, and so very alone in that moment.   As I finished dressing, the nurse came back in with my mom.  She sat down on the little black stool waiting for the doctor with me.  I wiped the tears from my eyes as she told me to suck it up and get over it.

 WARNING:  The following will induce deep murderous rage.... 

The doctor came back in.  He sat down across from my Mom, addressing her as if I weren't in the room.  As he spoke I stared at the bloody paper that was gathered at the foot of the exam table, awaiting disposal.  "Ms. McBride, your daughter seems fine.  I believe the reason she hasn't started menses is because she's such a tomboy that she's dreading womanhood.  This seems to be a psychosomatic issue.  I'm prescribing her Zoloft.  Also..."  He turned to me. "Perhaps if you bought her some frilly dresses and better fitting shirts, perhaps something with a floral print, she might begin to feel more feminine."  He then addressed me directly.  "You know, you could run some laps at your high school track. Start out at running one lap, then two the next day, each day increasing.  Over time you will take on a more supple feminine form.  This, in conjunction with the medication should alleviate this sexual identity crisis you're having.  That should get you on your way to menstruating like a normal girl."

Me at 16.  Definitely needed more flowers n shit.

I don't remember much else about that appointment.  I do know my Mom filled the prescription, but ended up throwing it away.  My mom called the hospital and filed a complaint.  As it turns out, that doctor was an interim doctor and was just filling in for the normal OBGYN who was on vacation.  I had a second appointment on what seemed like the very next day with a female doctor.  I remember sitting on a chair with my knees to my chest yelling that they wouldn't be touching me.  The doctor told me that wouldn't be necessary and scheduled me for another CT scan.  I'll spare all the details, as I don't remember much.  I was told I had a mass in my abdomen and it could be cancer.  I remember seeing a geneticist, and then I remember having surgery to have a "hysterectomy".  Looking back at the doctor's notes, it appears that my diagnosis was disclosed to me, which I don't remember. They told me that due to my condition that I likely had too small a vagina and I would need surgery before becoming sexually active.  Also, I would never be capable of having children.  That's it.  No counseling, no follow up, just, "hey, sorry you're not normal.  You had a bit of a cancer scare.  Oh yeah, you're not physically capable of sexual intercourse without expensive surgery.  Have a nice life."

So fast forward a few years.  I'm living in my own apartment in Oklahoma City.  I was moving some boxes when I dropped one.  Papers came spilling out and on the top of the pile was this:

At first I couldn't fully comprehend what I was reading.  Male?  What?  Suddenly the memories came flooding back.  Perhaps somehow I had blocked this from my memory. I called my cousin Amy, who graciously explained the condition to me. Hour long chats led to all night sessions of googling, reading medical journals and looking at pictures of vaginas to determine if mine looked normal. The images online associated with Androgen Insensitvity or "Testicular Femization" as they used to call it, are horrifying.  They objectify these poor patients under the guise of scientific curiosity, as if they're not human.  Naturally, I felt like the scientific community was not a safe place for a freak like me.

Most people at 21 are partying, drinking, having some fun, not thinking about how they'll manage to live their life without the possibility of sex and normalcy.  Since I was really young, I wanted a family.  I always felt like I had been wronged by being born into the family I was born into.  I wanted to right that cosmic wrong and be the mother to my children that I never had.  The thought of not only never being able to have that, but also having to live my life alone and without physical intimacy made me want to die.  I couldn't afford a surgery.  I didn't even know how bad my condition was.  I couldn't bring myself to explore my own genitals to figure it out. There was a shame and secrecy about my body that I hid to everyone around me.  To most I seemed to have my shit together.  I was working as a department manager at Wal*Mart, I had a nice apartment, I was going to school, and I was really active in the church.  Inside I was battling the idea of killing myself.  I didn't date.  Ever.  The thought of progressing to that point with anyone was terrifying, and in many ways still is because I still carry the trauma of those years with me.  What was I to tell a partner, how would he react?  I spent the next few years in total secrecy, hiding behind the legalistic abstinence and sex shaming culture of the church.  I feigned normalcy by having overblown crushes on boys at church, at work, at school, etc.  I had a penchant for unavailable men because deep down it protected me from ever having to have a real relationship.

 In 2009, there was an international obsession with genetic testing in olympic athletes.  It had been determined that a young girl from South Africa who appeared very masculine had been found to have high levels of testosterone in her system, and was deemed to be at an unfair advantage.  She was stripped of her medals.  I identified with that girl.  But I couldn't imagine how she felt with everything being so public for her.  So I started opening my mouth.  I started talking about my condition, known as Androgen Insensitvity Syndrome.  I became an advocate for this South African woman who faced ridicule.  By reaching out online and commenting on news posts to try and educate people that it didn't matter how high her testosterone levels were if her body was insensitive to them.  I made a handful of friends that way, people who were in the same boat.  We never met in person, we just emailed back and forth about our struggles.  After eleven months of embarrassing speculation, testing and not being allowed to compete, Caster Semenya was given back her titles and medals and allowed to compete again.


In that time that I began to identify with Caster Semenya. I became outspoken, I talked of my struggles, I talked of my shame, and of my fear.  I finally made steps to start addressing it.  I had been seeing a therapist for some months when I finally took the plunge.
I hadn't been examined since my surgery at fifteen, but I needed to know what my downstairs situation was. The anxiety was unbearable.  Over the years I had tried to go in to have pelvic exams, and I was always met with medical curiosity as though I was a rare unicorn only heard of in literature and never seen in the flesh.  I always ended up literally running out of the doctor's office, ashamed. However, this time I was determined and I had several months of counseling to help me gain the courage.  I went to my GP and I said, "Dr. R, I want you to look at my vagina."  He seemed puzzled by this request as there was no glaring medical reason for it.  I explained the situation to him and he referred me to a specialist.  The specialist was a very genteel black man with a bit of a lisp.  As I readied myself for the table I sat there with tears streaming down my face, unsure of what the day would unfold.  This time there were no Garth Brooks posters and no cute kittens.  Just a kindhearted nurse who held my hand and a very gentle and communicative doctor.  I felt a stinging pinch as he inserted the speculum slowly.  I clenched the side of the table, my tears growing in size, the pain strengthening.  The doctor began to take some swabs and feel around inside me with his fingers to determine "suitability for penetration".  He pulled his head out from under the paper sheet that was draped over my legs, looked me right in the eyes and exclaimed ; "I have good news!  I'd say you're adequate!  GENEROUS EVEN!"  Both excruciating humiliation and  intense joy flooded my brain.  The doctor and nurse left me to get dressed.

As I sat on the edge of the table, tears seemingly interminable, the doctor came back in and took my hands.  As he sat directly across from me he said something I will never forget.  "Ms. Brooks, I don't know who lied to you or why, but your condition hasn't affected your ability to function.  Go, live your life.  Meet a boy, have a lot of sex.  You have my permission to live a normal life.  Honestly, you could never tell them truth, they'll never know."  There was still a bit of shame in the encouragement not to disclose my condition, but I can't describe the relief I felt in that moment. I felt as though I had been given life, like I was being rescued from certain death.  No amount of embarrassment in that moment could negate the validation I felt.  I'll spare you all the details, but everything works just fine.  Gentlemen, I'm taking applications now...

Anyway, all this leads up to me finally getting up the nerve to attend an AIS/DSD conference. Which happened to be in Burlingame, which is just a short drive down the peninsula.  I can't tell you the joy of meeting so many men and women with such similar stories about being lied to, about hiding in shame, about the isolation.  These are common themes.  Listening to other's stories really allowed me to identify what aspects of my story were still holding me back.  Yay!  Things to focus on in therapy and in relationships!  I also got to meet some of the most amazing people.  There's an unspoken bond.  "Hey, you're different like me, I know how you feel!"  It's just a completely healing experience.  Also, seeing the next generation of kids being brought up to embrace their difference and be empowered to either live with or without normalizing surgeries and being allowed to make their own decisions about their bodies made it feel like everything we had all been through was worth it.  Our struggles and our voices will hopefully keep these things from happening again to the younger generation of kids with DSDs.  They're able to grow up embracing who they are, and make a decision as to what gender they want to identify as, rather than being assigned one.  Today the world is much more open to ambiguity.  The blurred lines of sex and gender are becoming less and less visible as people are finally accepting that a binary system isn't an all inclusive one.  I have come out of this conference a better version of myself, and I look forward to being a voice.

To those of you who gave me money to help me attend this conference, I am so deeply grateful. I wish I could hug you each and every one.  If you'd like to make it so that others like me, or young people, or families with diagnosed little ones can attend a conference, please feel free to give.  We're still a few thousand from our goal for next year's conference in Cincinnati.  We don't want anyone to not be able to experience the healing of  a conference like this because of money.  So if you're feeling generous, there are a couple ways to give. 

You can give any amount you'd like on our website:

http://www.aisdsd.org/contribute/

Or, you can give by receiving! Amazon will donate 0.5% of your purchase a charity if your choice which you designate.Please choose us, the next time you buy from Amazon. Thanks!

http://smile.amazon.com/ch/37-1407648