Around the start of junior school, teachers expressed concern about my hearing. It turned out after testing, sessions with a specialist and an hour of electrodes being stuck to my scalp that nothing was wrong with my ears; what I had, and the reason I often asked people to repeat themselves, was a form of epilepsy.
In films all epileptics have severe symptoms, convulsing violently during seizures. Mine were extremely mild. Childhood absence epilepsy, sometimes called petit mal, involves interruptions of conscious thought that last approximately five to twenty seconds – sometimes accompanied by subtle motor twitches, sometimes (as in my case) by stillness and a blank stare. A few times a day, sometimes mid conversation, I’d black out for a few moments like a television blinking, asleep with my eyes open. This never lasted long enough for me to notice time had passed; the only reason I found out about it, or that anything was wrong, was from other people. I preferred the word ‘condition’ to ‘illness’, since although my brain glitched here or there, I felt perfectly well.
Nonetheless, treatment was arranged. At the nearest full-size hospital, twenty miles from where we lived, a doctor whose name was John Storr prescribed a course of twice-daily tablets – first sodium valproate, then when it didn’t stop the black-outs, lamotrigine. The latter was a powerful drug which had to be introduced gradually (one of few fond memories I retain of it involves Mum trying to halve tiny pills with a bread knife), and which caused the skin on my forearms to peel. When at point I missed a weekend’s doses, the whole regime of daily pills had to begin from scratch: had my intake resumed as normal, my kidneys could apparently have ruptured.
But my recollection isn’t mainly of the physical effects. Although lamotrigine has been used to treat some forms of depression, taking it was the first time I experienced the lasting feelings I’d later associate with that disorder – demotivation, numbness, helplessness. It wasn’t the tablets themselves that did this, but taking them morning and night for several years. It filled me with the sense that someone else, inside that grey-green seventies hospital with its stench of detergent, called the shots on my body and my life. I hadn’t minded absence seizures, but I minded dry rashes burning my wrists, the fear of forgetting my meds and the obligation in itself to keep someone happy by necking them.
One of British healthcare’s few downsides, I think, is that doctors can feel more public officials than advisors – as I remember, we did what ours said and that was that. I don’t recall Mum ever being part of a decisionmaking process, or having it discussed whether I needed medicating. (My epilepsy, whose symptoms treatment had only held back, cleared up by itself by itself by the time I turned twelve as CAE usually does.) My seizures were undramatic and infrequent even by petit mal‘s standards, and had never stopped me being top of the class. They may have posed risks in some scenarios – swimming, for instance, or crossing the road – but the consequences of missed tablets seem in hindsight to have posed at least as much danger.
I find myself wondering if lifestyle changes to minimise risk – not swimming or crossing in heavy traffic while alone – might have been a more constructive response. As it was, I developed difficulties swallowing my pills: they sat on my tongue partially dissolved, refusing to be caught up in copious mouthfuls of water until the bitter, powdery remains slipped down my throat. I’d retch at the taste and the sense of violation – of humiliation – this always prompted, and developed a formidable gag reflex. For many years once off lamotrigine, I simply refused to take tablets at all, going to bed with headaches instead, and even as an adult, doing so makes me feel as if I’m about to vomit.
I don’t doubt John Storr was a caring doctor who did what seemed best, but he was also the first authority figure whom I resented.