“Most doctors don’t know much about Klinefelter’s syndrome,” said novelist and GP Dawn Garisch at the launch of Stephen Malherbe’s Living with My X, the True Story of One Man and a Rogue Chromosome. She herself has never diagnosed it and no patient of hers has ever presented with it.
The condition, however, is less rare than might be thought: it affects 1 in 1000 human males, and it has left Malherbe with an extra X sex chromosome. “This has many implications for the individual in terms of their physiology and psychology,” said Garisch. “A lot of people don’t know they have it, although it is typically detected in adolescence when the secondary sex characteristics don’t develop.”
Malherbe wrote the book to make parents and teachers aware of the condition. He said that boys going through problems might be labelled “lazy”, as he was, without knowing what is going on.
For Malherbe, when faced with a multiple choice test, he does well, but writing an essay, he battles to form an argument on the page and struggles with short term memory. “If this had been picked earlier, my life path would have been very different.” As is typical of XXY boys, Malherbe was subject to schoolyard bullying. He recalled his diagnosis at 17. “That was a different time in this country, 30 years ago, when boys did military service. We lived in a very macho society. At 17, I had body of 10 year old. When I enlisted in the Air Force, I was told, ‘You’re at the wrong place, you should be at primary school.’”
Garisch said, “The remarkable thing about this story is that he never comes across as a victim, despite the difficult beginning. He’s taken the situation and turned it around; he’s taken it on and ridden it.”
While at a retreat for healers at Findhorn in Scotland, he had a major realisation: “In order to heal fully I’d have to mend myself. Before I could practise as a healer I had to be whole.” This was what led him to undertake the healing work of telling his story.
Garisch said, “Many people stop themselves from writing their own story, fearful of appearing narcissistic; or their inner critic makes them shut up. But if you’ve had a really difficult time, you have to go back to it with an eye of compassion. Stephen went back to his childhood with compassion for that child he was in order to write the experience. He’s saying: Here I am; have compassion for me, for what I went through. That’s part of the healing, taking your life and making a creative artefact out of it.”
Garisch advocated early detection and treatment. “People don’t realise how common it is. As a parent, this is the last thing you think of. You realise your child is different, and maybe this needs investigation, or treatment. But it puts you in an uncomfortable zone. We tend to reject the over-pathologising and overtreating of normal conditions, for example, the reclassification of shyness as ‘social phobia’. But with Klinefelter’s, you have a situation you need to pick up early.”
Garisch raised an important question: “What is ‘normal’? We all have something to deal with. Yours is overt. You have an XXY configuration, whereas the rest of us have XY. You’ve taken that difference and made it an important part of your life; you haven’t gone under because of it. We can all extrapolate from your story to our own lives. Your book is a great inspiration for us to deal with limitations and difficulties.”
Co-author Christina Coates said stories were as important to humanity as food. “A story makes you live.” She said that in the hero’s journey, the model was the ordinary person who is called to take on a challenge. “Stephen did this. He could have given up and lived invisibly. But he rose to the challenge, and undertook an amazing journey.”
Garisch said that Malherbe was a role model in a macho time when the army, braaivleis-and-Chevrolet amplified the difficulty and meaning of manhood.
In conclusion she referred to a recent psychiatry conference she attend where she noticed her medical colleagues are changing their tune. “They are no longer talking about a ‘cure’ for mental illness, but about ‘managing our conditions’. It’s pie in the sky to talk about a cure. Steven has absolutely lived with what he’s got.”
The audience listened enrapt. One couple, whose son was recently diagnosed, shared a part of their moving story in the question and answer session. An expert from Groote Schuur offered insight into the challenges people faced. Another medical professional raised the difficulty that parents face when antenatal testing for chromosomal abnormalities reveals Klinefelter’s syndrome.
In true Book Lounge style, the snacks were designed with Verushka Louw’s supreme attention to detail. Cucumber slices with cut-away Xs on tuna mayonnaise, asparagus spears crossed on brie, cheese straws lovingly shaped to represent Malherbe’s extra chromosome.
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Klinefelter Support and Information