Hazel McHaffie

demetia

Life interrupted

Boy, what a sweltering July! Record-breaking stuff. The lawns are already brown but the flowers seem to be thriving …

LiliesA good time to be out and about ‘on holiday’ with the children rather than indoors trying to work. Water has featured rather a lot to keep everyone’s temperature under control …Cooling off in the seaanimals provided a happy distraction …Feeding goats by handand some daringly fast travel generated a welcome breeze …Go-kartingBeing in loco parentis to two of my grandchildren for a couple of weeks reminds me of how much effort goes into encouraging youngsters to be courteous, well-mannered and decent little people. We all want to be able to take them out into polite society and not be humiliated or embarrassed, don’t we? It’s not a big ask.

So what would you do if one of yours make rude gestures, or shouted obscenities at complete strangers in shops?  Or let out wild shrieks and blasphemy in a tranquil church? Or abused themselves in public places? What would you think of the parents if you were simply a witness to such behaviour?

No, I’m not describing life chez nous this past fortnight; my own personal experience of such things is limited to that of a passing stranger. But I’ve watched documentaries on the subject, and seen something of the horror for families dealing with compulsive swearing, shouting and antisocial behaviours. Somehow though, up to now my sympathy has been largely with the parents. I couldn’t imagine ever going anywhere with a child who screamed profanities or simply had to tap a door sixteen times, twenty-nine times a day. Or did antisocial things in public places.

My latest discovery, Life, Interrupted by James McConnel, is therefore, an instructive read, although I should probably add a caveat: it might offend the sensibilities of some. It tells the autobiographical story of award-winning composer, James, who started to twitch and sniff compulsively when he was six, and lived with increasing forceful and obsessive behaviours until he was eventually diagnosed with Tourette’s Syndrome at the age of thirty-two. (Hard to believe no one identified his problem earlier; his symptoms were classic.)

Now, I might as well confess from the outset, that I needed to hear this message for very personal reasons. I have a very low level of tolerance for perfectly ordinary nervous tics and repetitive actions – even harmless ones like squeaking shoes, sniffing, picking spots/nail/ears, flicking the pages of a book/end of a pen … I’m not proud of this failing; but it’s inbuilt and inherited, and it’s something I’ve had to live with all my long-legged life. The endless repetition drives me nutty inside; I’ve learned for the most part not to show my irritation on the outside – I think! And hope.

So I’m hugely admiring of the parents, nanny, teachers and fellow students, and girlfriends who managed to overlook the plethora of jerks, sounds and compulsive behaviours that James exhibits – the good and kindly ones at least. There are plenty of boys at his boarding school, similarly bound for Eton, who are merciless to the point of cruelty. And wherever he goes James himself harbours this deep sense that he doesn’t quite fit; he’s a ‘nearly person’. He repeatedly ‘fails’, adding each time to his growing sense of disappointment and rejection. He has no idea how to engage in normal social interchange with his peers; he simply can’t omit any of his rituals in order to get to a seminar on time; he finds it impossible to see past his obsession about the symmetry and rightness of words and numbers to answer exam questions.

Life, Interrupted, though, gave me a better sense of the stranglehold this condition has on the person himself, the premonitory urges he has to fight every single day, the aftermath and consequences of each outburst, the impotence he feels in the face of this compulsion.

James calls his nemesis ‘the Controller‘, and later ‘the Beast‘, and it’s small wonder that he seeks refuge from its pernicious influence in the two things that tame it: music and alcohol. The first soothes it, the second deadens it.

For him it’s more than the occasional shouted expletive or violent jerking; it’s a whole range of feelings which he must constantly fight against or appease:

‘I have this terrible urge to crush boxes of vibrating eggs, touch fridges, check under the bed for men in blue coats, check in lavatories for arse-pecking birds, smash glasses, count baked bean slogans, tap light switches, copy things people say, hold my breath until it hurts, jump off ski-lifts, smash teapots, jerk my leg, arm and neck, sniff almost everything, cough, make faces and grunt like a pig.’

James is an exceptionally gifted musician who studied flute, organ and composition at the Royal College of Music in London, but even here the Tourette’s threatened his success. Only when he was helped to understand his condition, to give it a medical name, and to make an informed choice on its management, did he start to take proper control of his life and career. Since then he has gone on to write hundreds of scores for the theatre, musicals, documentaries and dramas. What a triumph over adversity. His nemesis has become ‘the Brat‘, much more benign and less controlling.

A sobering read especially for an intolerant person like me.

This one (though non-fiction) joins the list that includes Mark Haddon’s The Curious Incident of the Dog in the Nighttime, Jodi Picoult’s House Rules (featuring protagonists with autism); Lisa Genova’s Still Alice (dementia); Ben Elton’s Inconceivable (infertility), etc. All easy enjoyable reads that have helped me develop that little bit of extra sensitivity, understanding and tolerance. Which as you know, is my own aim as a novelist.

Now, back to full time grandparenthood … It’s the turn of the older two children this time, and they start off with more normal temperatures.

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