misunderstood September 13, 2009
Posted by harlequin in klinefelters.Tags: condition, cynicism, deep, dreams, emotion, enigma, experiences, face value, home, infertility, intended, klinefelter syndrome, life, manifest, problems, realisation, relaxation, subjecation, water, xxy
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In case you are unaware, I’m Miss N de Stood. Though I lack the certain undercarriage, I do not lack the depth of emotion. From a universal point-of-view, my intentions and humour are lost on some people. Chaos and cynicism though unavoidable, are not my relish; I am neither selfish nor ungrateful. Two people know this: my wife and my best friend (though truth-be-told, my wife is my best friend, so in this case could be rephrased to: my wife and my best male friend).
This ancient friend of mine – we both have known each other some twenty years – knows things about me that only another ‘xxy’ could ever know. To extrapolate, how did we become friends, while unknowingly he had the same condition? While the ratio states 1 in 700 have Klinefelter Syndrome, does it not seem rather unlikely or uncanny that we both could meet and share this experience as friends? All I know is that without his support, it would’ve been a lot harder to deal with.
One example is analytical contemplation. It is something I do a fair bit, though do not know whether it could be attributed to my condition exclusively. Day dreams are frequent and in many cases I find solutions in this ‘virtual sandbox’ (also in the shower sometimes). However, the drift into fantasy can become too intangible, because most of the time we dream what we want to experience and life doesn’t always work out that way. So we doubt our dreams as we doubt ourselves and ultimately, I doubt.
Though, in this mind-space there is no relaxation and I long for the comforts we shared in what seems like eons ago, at Frankston; where the beach was our doorstep and the water, our home. It is lonely where I am now. I shake with a sort of exhausted disregard and tire of the directed anger and petty particularities. Yet, I amass guilt of the hospitality given, when we had no other option; and the unmistakable realisation that we’re not really welcome anyway. Subtle hints. Do you take them on-board and harbour them, or ignore, hope they’ll go away for long enough so you can relax, settle down and become comfortable? Newsflash!!! Once you’ve experienced discomfort, it doesn’t slither under a bush, it manifests.
Sometimes I get so frustrated I can’t think straight. I sit down perfectly still and hope I can quiet my mind long enough to think of some good advice I could follow, but I seethe unto exhaustion. Just last year I was finishing my VCE, working part-time and read books every hour that work, school or home-life did not fill. We had a rich and full life with our loving/manic pets and each other, but now, where is home? Where can we relax and be ourselves? I don’t even know the meaning of the word anymore, because it’s no longer a place.
To some, I will only ever seem like an enigma: a perplexing dilemma since I am honest and open, though could be considered an introvert on ‘face value’. Over time I’ve learned that if others only judge in this manner, without truly opening up themselves, then it becomes a self-fulfilling prophecy.
I guess I just feel particularly overlooked and unconsidered when it comes to the things I’ve contributed. I am so tired, I will rest now. Write more at the perpetual ‘later’, only to regain consciousness at intervals and find a thousand j’s. Is it too much to ask for some happiness? All this pride-swallowing and emotion-cloaking is becoming as transparent as the tension I can almost breathe.
And the search continues… December 8, 2007
Posted by harlequin in Uncategorized.Tags: hormones, klinefelter syndrome, life, problems
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…for a comrade who is not hung up about their Klinefelter condition. An individual who knows that the chemicals inside our brain are influenced by hormones and not the supposed thoughts of others as an individual deficient in Testosterone might suggest. One in six hundred, that is the likelihood of crossing paths with one another ’sufferer’ (I say sufferer like this, because I do not feel debilitated by my condition and think the word ’sufferer’ can be better utilised by others with greater afflictions; we are small potatoes); I am the one who is in control of my life, not my hormones. Though saying that, when the medication runs its course, the hormones fluctuate. Thus, it is in our best interests to maintain a regular testosterone replacement routine. Without testosterone at a young age, we do not develop properly and as a result may be affected more so in adulthood. My condition was detected just after the start of puberty and with bi-weekly injections I was developing normally.
When I was growing up, the information superhighway was obviously not available and so the possibility of meeting fellow ’sufferers’ was unlikely. Early in my development, an endocrinologist informed me that the only support groups available were for those with mental problems, extreme cases of Klinefelters. I felt lost. Now it appears the reverse and this is not always a good thing. I have conversed with an individual who is so down on his life and others, so desperately seeking pity, that he repels everyone: ‘And yes the f**king world has been beating the crap out of me for most of my life. Yes the f**king world does owe me a f**king favour. The world can go f**k itself for all I care’.
We all think like this sometimes in our lives, every one of us: a broken heart, a death in the family or the unsatisfactory results of failing study, for example. But to draw all the problems with everyday life into one issue – ones genes – is ridiculous. Our minds are highly complicated at the best of times, yet we need to look after them as best we can. If we do not take the right medication, then it is our responsibility, not the worlds. I don’t blame the world for how I was created, it’s not a bad thing, it makes me unique; isn’t that what we all want to be seen as, individuals?
You can be a victim or prey to the fluctuating hormones inherent in deficient testosterone or you can take control; I know what path I’ve chosen.
