The Hole In Me to the Whole Me

While this blog is about being XXY, I feel it to be such of little consequence as to the broader implications of my identity and what has shaped my personality.  So while I might hop around topics a bit, everything here is related.

 I was born in 1983 and I grew up in Des Moines a small city in Iowa.   From the outside, I appeared to be a quiet young man, soft-spoken, artistic and shy.  From a young age, I had crushes on older boys and men.  When I was twelve I understood that when kids called someone a fag on the playground they were describing me.  I was a fag, I was gay.

I kept my secret the best I could, and admittedly not as well as those before me. When I was in eighth grade I took a bunch of pills in the medicine cabinet and tried to kill myself.   I was put under psychiatric care, not for the first time in my life.   I grew up in talk-therapy starting when I was four years old.  I am not sure what behaviour I had that caused my mom to put me into therapy, but therapy continued my whole life up to my suicide attempt.  I had always felt anxious, depressed and alone but not sure as to the reason.

While my mental health has always been in question, and I was diagnosed with an array of anxiety disorders, major depression and even bipolar disorder eventually, it was that during all of this my XXYness was discovered.  After a vacation in British Columbia, I had come back to the states, and I felt and acted strangely.  It was discovered after some talking that I had accidentally been overdosing on Prozac.  It was an accident, as the Psychiatrist kept changing my dose and medication type ever since I began treatment.  At the ER, while I was told I wouldn’t be harmed by overdosing a nurse commented that stretch marks on my back seemed unusual.  He recommended I see an Endocrinologist.

When I met the Endocrinologist she addressed my parents more than me and explained that I had Klinefelter’s Syndrome.  Finding out I had Klinefelter’s made my parents over-joyed for they could finally pinpoint what was wrong with me.  I think I might have felt differently if I hadn’t been fifteen at the time.  It gave everyone a great deal of satisfaction to finally figure me out.  At this period in my life, it wasn’t the first blow to my self-esteem and it was a blow because everything that they claimed was true about being XXY was negative.  I felt less-than male and less-than-human.  However, because I was also being treated for being bipolar disorder at the time and was already struggling in school, having Klinefelters Syndrome was the least of my worries.

I began treatment with testosterone shots after a nurse explained to me that the alternative was that I could put testosterone patches (similar to a nicotine patch) on my testicles each day.  The thought sounded uncomfortable at best so I began taking adult doses of testosterone each month.  It only took me about two months for me to realize that I could not keep dosing like that as it made me crazy.   I had gone from what I thought was a normal sex drive to reckless sexual behaviour including masturbating until I was bleeding.  I was given no emotional support for the dramatic changes my body was going through.   It was as if they (the doctors and my parents) expected me to just man-up.  Had I not also become increasingly violent at home, they probably wouldn’t have cared.  I remember throwing a glass vase at my door one night unable to process my anger.  All of this was unusual behaviour for me and only began once I started taking testosterone.

After two years of changing my dosage, I began to feel like another person altogether and wasn’t a person I liked.  I eventually was told that the testosterone patches didn’t need to go on my testes but could go on my arm. Even with that knowledge and change in treatment I still felt miserable.  When I was seventeen, out of desperation to save my personality I decided to go cold turkey on everything.  I stopped my hormones and my medications for being bipolar.  I thought at the time I would encounter more resistance from my family, but once I stood up for myself they left me alone.  After a week of being off hormones and medications, I actually started to feel better.   I was still a confused teenager and I still had regular teenager issues like not having self-confidence about the way I looked, but all the emotional turbulence and identity confusion was gone.  I felt like my brain had been given back to me.  In school, I went from having been behind two years to graduate on time, as a runner-up to the valedictorian.

In my early twenties, I moved to Chicago, partially to pursue higher education and partly to escape my crazy family.  Like someone who grows up in a cult, I had slowly begun to realize that the family in which I was born into was dysfunctional.   Thanks to a mentor, I had begun to get into reading.  It was the first time in my life I enjoyed reading books.  I started to read psychology as an attempt to understand myself and my family.  I read Arnold Mindell, Carl Jung, and others which bled into a fascination with all non-fiction.  In elementary school, I was told I scored low on comprehension.  As an adult, however, I discovered that reading non-fiction, I didn’t have any issues with it.  I eventually worked my way to the “Self Help” category and began to think that I had come from an abusive family.  When I talked about my childhood out loud, I was validated by others that many of my childhood experiences were abusive.  As I explored my history I realized I could not remember my home life prior to age twelve.  Not knowing what had happened to me scared me and also sparked a desire to further want to understand myself.

At the same time, I had been exposed to some fringe gay movements where I was introduced to the Radical Faeries.  They are a spiritual/activist oriented gay movement.  It was there that I met gay men who didn’t fit the stereotypical mould.   Some seemed like regular guys just out camping while others were nudists,  and some were drag queen types with beards.  Having seen a burly man in a tutu chopping wood in the forest, it really opened up the notion that it was okay to ignore a lot of the “rules” around gender.   With the early introduction of body acceptance and unusual gender roles, it made my own gender identity as an androgynous person easier.   While at first, I did dress more male, my gender identity progressed to being more inclusive of my feminine side and I found that I was more comfortable wearing women’s clothes, partially for the fashion and mostly because of the fit.   At first, I found it nerve-racking to shop in the women’s department still afraid of what the general public might think, but ironically I got more ballsy and cared less and less.  I know many XXY’s have struggled with gender but for me, it wasn’t something I struggled with it was more of something I learned to play with.

Sexually, on the other hand, I was struggling.  I felt numbness both physically and emotionally.  While I had dated men exclusively, I never could get emotionally and physically close to anyone.  In college, I began to explore my theory that I was sexually abused as I had all of the classic symptoms.  Nearing graduation from Art School, all of us students had to come up with a year-long project, in which we were to explore a topic both in writing and a visual creation of some kind.  It was then that I thought that structure would be the perfect platform for me to explore my sexual numbness and memory loss.  Through that year while developing three large-scale artworks I was falling apart internally.  I began having flashbacks of childhood rape.   I managed to graduate but not without the help and support of my professors.

After graduation, while I pursued trying to find work, my mental health was deteriorating further as I developed irrational fears that I would be raped in my apartment. As a way to cope, I began cutting myself.   The cutting was the last clue that I needed help and I went back into therapy, this time with a somatic/body approach.  It took about a year of weekly therapy to stop cutting.  My numbness decreased by more than 80%, and I have regained an ability to remember more of my past.  The memories have filled in a few blanks as to why I was so anxious growing up.

Strangely I think because of my other trauma, being XXY was not been that much of a struggle for me personally.   My energy has gone elsewhere to places that needed healing, and I’ve found my genetic disposition to be one of my greatest strengths.  Granted society can be a bit of downer on those of us who choose to live outside of the mainstream gender roles, but with breaking certain rules comes freedom too.   I have lived 13 years without testosterone of any kind; I have felt a certain calmness that I don’t think I would otherwise experience.  Recently as of this year, I have had my testosterone and estrogen levels checked.  My testosterone levels remain in a healthy but low range, and it was discovered that I actually make a higher than average level of estrogen.  I continue to live my life in the middle without medical “treatment”.

As far as my other issues in life, it’s a continued journey.   Although my early diagnoses of bipolar disorder has proven false, and much of my other issues with anxiety and depression I now attribute to my childhood trauma. I do live with Post Traumatic Stress Disorder (PTSD) and while I am a working artist, I haven’t been able to find a more conventional means of making money.  The hardest thing as far as being XXY was realizing that the majority of the discomfort I felt had nothing to do with me and everything to do with others finding me uncomfortable.   The only thing that matters to me is what I think of myself, and if other people get confused then clearly they have some big questions to ask themselves.  The thing that has kept me afloat is the understanding that the person I want to be is more important than what kind of family I have come from or what genetic variation I have.  The person I want to be is compassionate.  I don’t claim enlightenment and like others, I am just a work in progress.