Do not do this, just take my word for it, unless you have the constitution of an Ox do not search for images of “Atrophied Testes” or “Atrophic testes in situ.”
The first search will give you hundreds of the most gory pictures of scrotum’s being operated on that you have ever seen.
The second search will give you some of those pictures and cross sectional slides of slices of testicles, stained, as viewed under a microscope, and you probably won’t understand any of it.
If you don’t take my advice and you’re male, and you don’t feel as if you had your balls kicked and feel that stretching, wrenching sensation in your lower abdomen for ages – you really do have the constitution of a Ox!
Even though I was diagnosed with Klinefelter’s syndrome in 1975, and had all the descriptive letters from my doctors, I’d never once seen my actual karyotype. Earlier this year (2012) I had my karyotype done again as the lab that originally did it had misplaced my photograph, and they kindly agreed to do it again. I suppose deep down I was hoping it would come out different, but it didn’t, as expected in all cells examined, I’m 47,XXY. This is the karyotype of the first cell number 001
My first thought was to try to show what atrophied testes look like in place, mine specifically, but unfortunately I don’t have any images of mine. So I thought there might be some on the internet, but….that was not a good idea. The best way to see atrophied testes is out of the scrotum, and the only way to do that is show pictures of surgery, and I cannot do that, they make me feel sick.
Even though I do not have any testes any more, I still feel the pain associated with a blow to the balls, and uncomfortable when I see images of surgery on balls. It’s as if I never had them taken out. Is that called ‘psychosomatic’ imagined? Well my brain says the pain is real, and that’s good enough for me. Even though I know they’re not there, I still have all the reflex actions any other man has.
When I was first diagnosed with Klinefelter’s syndrome, late in 1975. Karyotyped sometime in 1976. Treatment beginning 6th day of October 1977. That’s the chronology, the sequence of events. Of course there’s a huge amount of information that is directly relevant to that chronology, that isn’t here, yet. How I felt is a big part of that information.
having to see my Endocrinologist at Wellington Women’s Hospital. That does not make a teenage boy feel all that masculine. 😦
The diagnosis of Klinefelter’s syndrome as a teenage boy is a major challenge to ones desired manhood. 😦
People talking about me, not to me. Treating me like I was an imbecile. 😦
I knew about sex chromosomes, I’m smart, I have an O level in Human Biology. I knew it all, at 17 I was young enough to know it all, and bold enough to say so!
XX is female XY is male, it’s all just so simple and convenient!
It’s the truth, it’s just not the whole truth, and it’s not ‘nothing but the truth!’ It’s a segment of the truth. All manner of different karyotypes are male and female respectively, even exactly the opposite to XX and XY! XY is female and XX is male too.
Human Biology at High School teaches the usual.
It was all so exciting when I first started it, you know Human Biology in High School. Settling down to my streamed to leave school class at 15, as I had failed the exam that I didn’t know I was taking, to determine who did what at High School. Then the British Government changed the School Leaving Age, and made us all stay at school another year. If they had not done that I would not have got the qualification.
Anybody believe in fate?
(Back to New Zealand)
I felt like everybody knew, everybody was talking about me and not to me. That impression was reinforced when I found a letter from my real grandmother to my father, on the kitchen table. She was expressing her sorrow to him about my predicament and ‘predicament’ is the word that she used.
Predicament, what predicament? Like what do you know that I don’t know? Predicament, I have a predicament?
Yeah right, brilliant. “Pity you can’t write a letter to me!” I mumbled.
And how dare you tell my grandmother, and who told you? I never told anybody. I never said a word. It was my G.P. Dr Risely who told my mum, and she told my dad, and he told the whole god-damn world! Well the world as big as I knew, my family. And he wants me to go back and talk to him, he can get lost. He said one time, it was the first time I saw him, “If you’ve ever got anything to talk about I’m always available.”
Talk, talk, me talk, to you, what am I supposed to talk about? That’s what I thought of saying, but I just sat there and nodded. I was a master at nodding. There was a brief exchange of pleasantries and that was it, he gave me “XXY” “extra chromosome” and “Klinefelter’s syndrome” to search up on, and that is what I set about doing. No talk required.
All my friends and acquaintances were in London. I hadn’t made any friends at all since coming back. It takes me months to form friendships, they don’t just happen overnight. I don’t talk to people, not then I didn’t, and talking to doctors who tell everybody what my balls are doing, I don’t talk to them at all.
The only person I was likely to talk to was Blossom, but even her, can she be trusted with this delicate information? At the time I was not taking any risks. I can wait to talk to her.
The first place I thought to go was the Lower Hutt Public Library, not one of my favourite places. They keep books in libraries don’t you know. Books have information, and information is knowledge, and knowledge is power; apparently! I needed to power myself up.
The Lower Hutt Public Library is not today what it was in 1976. In 1976 it had high concrete walls and slit windows at the very top that let the barest or light in. Inside it was like a cave, not quite dark but certainly dingy feeling. As you’d expect there were row upon row of tall shelves packed full of books. Where to start? I wasn’t going to ask anybody that’s for sure. How do I phrase it? Do you know how many chromosomes and autosomes there are? Most people don’t even know they have chromosomes, and those that do don’t know they have autosomes too! I had to learn the filing system used in the library first, on my own. You might not think that is a daunting task, to me that was a daunting task. All the information I got to study at High School was handed to me, I never had to search for anything. I was not prepared for this research activity, I had to teach myself.
Oh it’s quite simple the cataloging system used, it’s called the Dewey system, or “Dewey Decimal Classification Scheme” very very simple. Ya learn something new every day, when you go researching. Academic researching isn’t physically challenging, but it’s exciting and gets the heart pumping, when you’re tracking down that elusive bit of information, like a detective. I’m trying to make this sound invigorating, are you getting it?
So having tracked down the books dealing with genetic abnormality I grabbed a handful and flicked through the pages to XXY, but XXY wasn’t there. Oh well I’ll try “Klinefelter’s syndrome” oh it’s there alright, yeah men with Klinefelter’s syndrome look like fat women with male genitals. I didn’t look like that. I still don’t look like that. Men with Klinefelter’s syndrome are sterile. I kind of flicked quickly past that paragraph, I didn’t really want to read that, and men with Klinefelter’s syndrome are mentally retarded. Ahh relief, they’ve got the wrong disease, I don’t have Klinefelter’s syndrome. There is no way I am mentally retarded. Since I’d tracked down more than 1 book, I figured I may as well see what the rest said too. Over and over again, book after book they were all the same, men with Klinefelter’s syndrome look like fat women with male genitals, men with Klinefelter’s syndrome are sterile, men with Klinefelter’s syndrome are mentally retarded.
Well I knew a lot about Klinefelter’s syndrome by the time I’d finished at Lower Hutt Public Library. I’d not had my blood test for my karyotype, but as soon as that was done and I got the results that said I was 46XY, that I expected it to be, that would be my conformation. I do not have Klinefelter’s syndrome, it was a certainty. These doctors don’t know what they’re talking about.
Then it struck me that there was more than 1 public library, maybe there was something more at Wellington Public Library? So I’d passed finally my Drivers Licence, that’s an epic all in itself, and I drove to Wellington, Public Library here I came! I was really getting into public libraries, they were really interesting. So this is what they were trying to teach me for all those years I was dragged to the Lower Hutt Public Library to take out books I never read, and always took them back on time, unopened. Maybe they should have just said “Graeme there the Public Library, go and explore!”
After a day at Wellington Public Library, Reference section, Medical, Klinefelter’s syndrome was no longer an absolute, there was variation. My passion for public libraries was dimming. Only some men with Klinefelter’s syndrome were mentally retarded, and they all had more than 1 additional X, like 48XXYY and 48XXXY. The only suggestion made to me was that I had 1 additional chromosome. But even just 1 extra makes them sterile. Sobering. They all have tiny testicles, balls, and that was one thing I could easily check out for myself, they were definitely tiny. I definitely did not have any body hair. I definitely did not have any facial hair. I definitely did not have any musculature. I couldn’t even make muscles stick out by flexing them. Maybe the doctors did know what they were talking about?
I was not being empowered, I was being emasculated! The information was not as expected. There must be more than this, there has to be more information, I can’t imagine why something as serious as this would be ignored. What about the children, what about the teenagers, where was the information about them?
I was just so pissed off. There wasn’t any bloody information. All the stuff I was reading, ‘they’ the family were reading too!
Do you know that in 1976 there was Genetic Counselling for the parents of children with Genetic abnormality? Isn’t that lovely. Yeah genius! There is no Genetic Counselling for the genetic freaks! There was nothing, in 1976.
An unknown genetic abnormality called Klinefelter’s syndrome, that’s what I was taught, that’s what I believed. At least it’s got a name, it can’t be all bad.
Yes is can be!
How about an oxymoron, an oxymoron here would be absolutely ideal. The medical profession were falling over themselves in their desire to tell me nothing. It was a wall of silence. Talking to people was not really my strongest suite, reading had become my strongest suite. You can’t get an O Level in Human Biology if you don’t know how to read, or won’t read. Reading is paramount to learning, for me.
I need DOCUMENTS.