About a year and a half ago, a friend informed me of a study being done by The National Institute of Health that would aid in the understanding of Klinefelter’s. I immediately told my wife about it, she encouraged me to investigate it and to participate.
I have always considered myself highly atypical of Klinefelter’s. I hit puberty in the second half of the 4th grade. By the time I was in 7th grade, I was shaving weekly. Aside from a slight learning disability with Math, I have never had any learning deficits. In fact, I was reading on a University level in the 6th grade. I also grew up with and around music. I began by playing the Alto saxophone in the 3rd grade. In 4th grade, I switched to the Trumpet. In 5th grade, I began playing the piano, and by the end of 5th grade, I added guitar to my repertoire. The other instruments were a great base of technicality and musical theory, but the guitar really spoke to me. I played every day, for as many hours as I could. I would listen to records and learn all the guitar parts by ear. An ear that was previously trained by the other instruments!
As my abilities and tastes in music evolved, so did the topic matter of the books I’d choose to read. No more was I reading mysteries, or “fluff”, but the philosophers, poets, mystics, gurus, and living legends of the 1950s and 1960s pop culture. Music quite literally had helped me open my mind and begin to blow the doors of my perception open!
By the 9th grade, I was living two separate lives. Weekdays were spent at school in suburban Long Island. I was the weird freshman with a goatee and the sports jackets, and the almost good grades (if only he’d apply himself more). On the weekends I was “MadDog Mike” Guitarist for Manifest Destiny, and sometimes “the Good Vibes Doll”, guitarist for hire, playing the Tri-State Music scene, living the Psychedelic Dream. I had a big-time social life, groupies, fans, and more. Lovers, female and male, and the beginning of an extremely unhealthy addiction to drugs.
Does this sound like a typical Klinefelter’s teenager? Granted, at that time no one knew I had Klinefelter’s. The thing with living two lives is that one life always burns hotter, more intensely, and that means it can’t last forever and then it burns out…
In the Fall of 1992, I got sick. I mean like sickly sick, like no energy, crawl under a rock and die sick. I convinced myself that I had contracted AIDS and was on my deathbed. Many tests were run, so many bloods drawn, Doctors couldn’t figure out what was wrong with me. For some reason, some of my bloodwork was viewed by an Endocrinologist. He called me to his office and informed me that I had an extra X chromosome. He told me that my condition was extremely rare. He continued by telling me not to tell anyone about it, he said I was a genetic mutant, that I should have been severely “retarded”, and as that I was so “Atypical” that instead of telling anyone that I had it, instead, I should just say I’m sterile. When my mother found out, she told me it was good they hadn’t known prenatally, if they had, she would have aborted me. I proceeded to do TRT for about a year and a half, I then decided I was like “this” for a reason and stopped TRT. For the record, my illness was undiagnosed Mononucleosis.
By March of 1993, my life was completely out of control. Too many drugs, too much sex, and not nearly enough honesty or personal responsibility. I was spiralling completely out of control. On March 3. 1993 I overdosed on a cocktail of Psychedelics and Cocaine. I was found unresponsive and was dead for around 10 minutes when ER Doctors were able to revive me. One week later, I had checked myself into rehab, and by the grace of God 25 years later, I haven’t relapsed, and live a contented life.
I received my certification as a Substance Abuse Counselor in 1996. I ran for Public Office on Long Island in 1997 and 1998. I continued playing the guitar, both in bands and as a guitarist for hire. In December of 1998, I moved to Atlanta Ga. I worked in the two fields I loved most. I played the guitar for several Atlanta and Athens based recording studios, and I worked as a lobbyist for the Sierra Club. Then September 11, 2001, changed my life plans. A friend in the 6th Precinct called me that afternoon and asked if I’d come up and help. I said sure, hopped on AMTRAK, and proceeded to assist in the rescue efforts.
The things I saw during the week that I volunteered in what was later called Ground Zero, caused me to develop PTSD. I saw things first hand that some combat vets never see. It was the best and worst decision I’ve ever made. When I finally and permanently returned to Ga in the Spring of 2002, I was forever changed by what I had lived through. I had truly found God in those difficult times, so when I returned to Ga, I began the process that would lead to my ordination as Priest in the Anglican Church in 2006. In this period I also had 3 surgeries on my lower back which continues to be a health concern of mine today. I’ve been a pastor ever since I’m no longer sure how to be anything else.
Along the way I married the love of my life and became Dad to her then 3.5-year-old son, he is now 13! Music continues to be a major part of my life, a part that I have endless gratitude for. Beginning in January 0f 2018, I began really feeling worn out and tired all the time. My sex drive had begun to wane, and I just never felt like I was operating on maximum. I consulted with an Endourologist in April of 2018, when my results came back, I learned that I had ceased producing a measurable amount of Testosterone. The number was so low, it was difficult to measure! So, after some thought and prayer, I began TRT. My Free Testosterone numbers are now on the low side of healthy, but I’m extremely pleased with the result and have no desire to increase them.
Now that we’ve established my background, we can talk about what I learned at the NIH.
I am extremely Atypical when it comes to Klinefelter’s! I don’t seem to suffer from any of the typical mental or social markers associated with the condition. My hearing surprised the audiologists. It’s funny because I’ve noticed quite a bit of hearing loss over the last 5 or so years. Taking that into effect, the audiologists seemed to believe my hearing was better and stronger than nearly anyone they’d testing. Most notable was my ability to experience and therefore hear tones that most cannot hear, including the Audiologists administering the test. After a lengthy conversation, we all agreed that I did so well, likely because of my musicality. My near perfect pitch and trained ear allow me to fully experience tonal variation! That’s super cool in my book.
Another interesting finding in my eyes was that I produce the same amount of Estrogen as a healthy middle-aged, pre-menopausal woman. That’s especially significant now that my wife has begun menopause! It confirmed an inner reality for me though. I’ve always felt extremely gifted to be so in touch with my feminine side. I’ve acknowledged for some time now that being Klinefelter’s 47XXY is being Intersex: neither Male XY nor Female XX, but Intersex XXY. Seeing the Estrogen levels really put that concept into focus. For all my physical (outside) maleness, I am also very much Feminine on the inside. In fact, my internal organs all appear the correct and healthy size for a middle-aged woman rather than a man. Where I understand that might be a horrible finding for some XXY’s, for me, it’s a revelation into the diversity of God’s creation. My Chromosomal Existence is not an accident! It’s not a bad mutation or something to be ashamed of. In fact, I believe it’s a reason to celebrate. I believe that if I’m exactly as God intended me to be, then think about all the other diversities in creation that are also intentional!
Finally, some revelations about the formation of my spine, as in why my back is so unhealthy! My back is only unhealthy when compared with a male XY or a female XX back. For an XXY back, it’s not as bad as it could be, and isn’t as good as it could be either. Simply put, I have an average spine for an XXY body. We will all experience spinal stenosis, degenerative discs, and degenerative bones. This happens because we don’t build bone in the same manner as Cis-Gender folks. Perhaps if I’d been on HRT from an early age, my bones would have grown “healthier”, but there’s no guarantee, and we can’t travel back in time. So, my future for my back is clinical study and clinical trial bound.
Maybe, that’s my biggest takeaway from the NIH. We need to stop trying to view our health within the construct of XX/XY normality. If we view our health and development from the XXY perspective, then we are all doing a whole lot better than we think. I hope that simply reading this small, sample part of my story encourages you. That seeing what I’ve done might encourage you. That seeing what I’ve done might empower you to do more.