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.
A day in the life of Klinefelter Syndrome November 30, 2007
Posted by harlequin in Uncategorized.Tags: implant, infertility, injection
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Yesterday morning was a perfect example of the complications of Klinefelters. One of the things that occur is an inability to dedicate concentration to one element. the day itself was planned out to be hectic. From Frankston, we had to travel into the city to obtain another Reandron 1000 script and implant of testosterone, so that i can function normally once more.
This may seem like a mundane task, but to me when testosterone deficient, it’s the equivalent of sitting an exam. Simple things like bridging words in conversation seem to throw me when I am testosterone deficient. for example, a porter of a parking complex asked ‘are you patient’ (he was asian), I thought, ‘what a weird question, yes I’m a patient person.’ Then later realised what he really meant. that doesn’t make me unintelligent, it just affects the way we retrieve information.
Upon receiving the script i sent my girlfriend down to the pharmacy, while I had to take a blood test to check for prostate cancer, my endocrinologist recommended it. having been up so early, we hadn’t had any breakfast and the lack of any fluids made my blood dehydrated, so when the nurse was extracting the blood, she had to apply more pressure to remove all the correct dose (as a consequence now, my arm aches!). I felt dizzy, experienced symptoms of shock and fainted, seconds later I was crying – it felt uncontrollable. it that happens a fair bit, the “rollercoaster” (as i call it) of emotions.
The implant was not painful at all, my doctor is extremely experienced, after having seen her now for around ten years. I told my doctor that i had been internalising a lot of the perceived emotions and intentions coming from my boss and workmates, though they may have been spoken or acted in good humour, my deluded reason at so late past testosterone deficiency (until yesterday, three weeks) made me think they were singling me out / putting me down. This of course was not the case, but we (KFS) cannot see it that way, our hormones dictate how we behave and compare us closely to what my doctor defines as ‘male menopause’. She also told me that of her other thirty KFS patients, all had lost their jobs just before receiving their next implant / injection. This was most likely due to their bosses / workmates not understanding their condition. I’ve always believed that honesty is the best policy and so, whether it is detrimental to my future within the company or not, always inform my employer of KFS. It is why it is imperative to receive the drug and continue its course, as any break can be intellectually, socially and financially disruptive.
Gone untreated and even unacknowledged (thinking ‘i don’t need it’ or ‘i function fine’) is only living to a minimal potential. In this case, a friend of mine was trying to have a baby with his wife; after one year they could not. After seeing a doctor, he was informed that he has Klinefelter Syndrome and is unable to produce sperm. Naturally this had a devastating affect on their relationship, but they persisted through two years of I.V.F. to no avail. It can put great strain on relationships and in this case a partner must be patient, supportive and understanding, as they will undoubtedly see both the best and worst of a Klinefelter Syndrome person.
