Absolutely every part of my life a has been affected by that additional X, there it is down there
I don’t care which one it is, I don’t care which parent provided it. Pick one, either one, that’s the extra one.
That’s not the original one, it’s a copy of the original one. I asked Dr Delahunt first time I saw him how many cells were examined to arrive at my 47XXY karyotype. He looked taken a aback, not expecting that question. All I have to go by when it comes to doctors is my personal experience, and most of the time I was with my mother. It was always interesting looking at them talk to each other, looking what’s on the desk, what’s around the room. Examining details of the environment. Not really paying any attention to their words.
Now I have to take notice of words, I’m not prepared for this. I like documents, books, pages, newspapers, anything written down will do, better than spoken words. Speaking words is just complicated. So much information can be imparted by a glance, why bother with words! Words a necessary when meeting new people, especially doctors. I had to concentrate.
The answer was 300.
According to all the books I’d read there was no cure. I was going to turn into one of those ugly shaped bodies I saw at Lower Hutt Public Library. I was going to look like a fat woman with male genitals. The prospect was not inviting. How anybody can like looking like that I do not know. Of course being a legal minor, just, my parents took me, under protest, to that first appointment.
Both of them there. They going to talk about my balls. I was petrified. I was going to have to take my clothes off in front of them. I had it all worked out, I knew what would happen. I gawd, where can I go? I was so nervous all the time, I shook like a leaf in a breeze, constantly. People call it ‘hand tremors.’ I had whole body tremors. I don’t know what they’re talking about, ‘hand tremors’ how lucky can they get? Only their hands are affected! I needed a hat.
I had no idea that was related to being XXY. I had no idea all my educational issues were related to being XXY. Really I had no idea about anything. I was bluffing my way through life. I learned how to take advantage of that bluff technique at General Motors, playing cards at lunch time. I’d only bet when I had a really good hand, for most of the game, then near the end when I had nothing I’d bet and everybody threw their cards in, I won with nothing! When you’re perceived as being a naive beginner, take advantage of it.
When the Harry Potter series of movies first came out I met a guy who looked just like the character Harry Potter. He wore exactly the same style of glasses. He had exactly the same bone structure of his face, he had exactly the same complexion. I advised him to take advantage of it, advertising agencies I was sure would be very willing to hire him. Ahh but he didn’t have the confidence. Confidence, the world runs on confidence. That’s how I learned to swim, I said I could when I knew I couldn’t. I bluffed my way into the main pool at Wainuiomata Public Swimming Pool, by lying. I was betting the instructor/pool attendant was not going to be willing to dive in fully clothed to drag me out unless I was drowning. That bet worked, and I taught myself to swim.
Now I had to teach myself Endocrinology. This was going to be a challenge. I’m still learning it too. I dove in at the deep end as usual, unprepared. I’d discovered the worst possible scenario and decided one way or another I’ll change that outcome. You don’t believe me? You’d better believe as I’m deadly serious. Klinefelter’s syndrome ought not exist on this planet. Klinefelter’s syndrome is a disease worth killing. That’s about 40 years ahead of my account, I’ll get there eventually.
I’m side tracking. I’m good at it, I’ve been good at it for years.
My parents decided they wanted to talk about how skinny I was. Well that’s not my balls, I can talk about that. This is when I found I could rely on Dr Delahunt to support me. He said, “Young men with Klinefelter’s syndrome are invariably skinny. They can’t gain weight as they can’t convert energy to muscle.” (I was just about to say that myself! It’s not my fault, stop blaming me.) They were happy with that reply then. The conversation went on about all sorts of other things, none of them were my balls, thank god! I didn’t believe in god then, but god can take the thanks for that. I don’t mind sharing glory.
Then Dr Delahunt said “Mr & Mrs Tucker can you leave the room now please, I want to talk to Graeme on his own?”
What he meant was he wanted to examine me. And they left. My worst case scenario did not work out this time. I didn’t bet on that happening. There is no way that idea was even considered. Every other medical appointment I had but 2 at that point, one of my parents was present, usually my mother.
I was still legally a minor. I didn’t have the right to make choices. All the arguments and protests before hand, and on the way there, come to nothing, my parents did care about my privacy.
By the way I call Dr Delahunt “John” these days. That’s his first name.
We chatted for a bit about what I’d done with my life to date. I was pretty depressing, I considered I’d not done anything. I’d wasted my life. I’d circumnavigated the world twice, not under my own steam and not by my choice, but I still did it. I taught myself to read, write, swim, learn. I had to, no-one else could, and they did try. Of course I got some assistance, but I had to do the work. So I wasn’t really the failure I thought I was, the failure I said I was. I think if I had more testosterone I would have had a different answer.
I hated being skinny, I said that, I wanted to know what he could do about that. I wanted to know about those fat women shapes I saw in the Library, can he stop that, is that my destiny? He explained to the current thinking of what Klinefelter’s syndrome was, how it was caused and how to “manage” it. There was no cure he said, I beg to differ. I’ll get there later too.
Then he examined me. I’d love to report it was a breeze, it didn’t hurt at all, and he was such an accomplished Endocrinologist and not at all like all those klutz doctors, who just didn’t have a clue how to palpate testes. It wasn’t like that at all, it was bloody agonising. It was always agonising. I’ve never had a palpation examination that wasn’t agonising. I think I know why, my balls were so small the doctors were palpating the epididymus too.
As John said recently, my testes were smaller than 1.0mL but the Orchidometer only goes down to 1.0mL so he could only record on my notes that they were 1.0mL. I had atrophied testes, they were much smaller than children’s size. They were useless. They were ‘diseased’ but they weren’t ‘diseased’ enough to remove. In England they were diseased enough, but not in New Zealand. I didn’t have a partner, in order to get my balls removed in New Zealand I need the consent of my partner. There are some silly rules in New Zealand about sex too!
So that was a bit of a sticking point for a few years.
There was a treatment but I had to ‘qualify’ for it. The qualification was that I had elevated LH and elevated FSH and elevated GnRH, they’re hormones in case you don’t know. Even though I had tiny balls they were still producing sufficient testosterone to not force my LH, FSH and GnRH skyward. I was tired, I had to have sleeps in the afternoon, I was skinny, I had no hair to speak of, no facial hair, failing sex life, and still I didn’t qualify. So I’m buggered if I know how anybody else can claim they were given massive doses of testosterone after just 1 visit with 1 doctor!
My experience is it doesn’t happen that way. There has to be testing done, examinations, time has to go by. John wasn’t treating me according to his plan, he was guided by the Endocrine Society. They determined the therapy. That was another sticking point for a few years.
Of course what’s a teenage boy most afraid of when visiting the doctor knowing balls are going to be examined? Got any clues? Having an erection! Honestly, I thought my genitals had changed colour because I masturbated, and I didn’t want him to know I masturbated. I believed as an erect penis was more obvious, then it was more easy to see if I’d been masturbating. As I said earlier there was no education about puberty and by the time I started studying Human Biology all the lessons were about aspects of sex beyond puberty. I never got the information that genitals changed colour at puberty. It sounds silly I know, but that’s what I thought.
But having an erection was not really a problem as I was nervous, shaking anyway, and my penis didn’t always work in those days. It was still in the back of mind though that one day my penis might work, in the last place I wanted it to. From John’s perspective he wanted to know my penis worked. We had a real communication problem in that area.