Personal Stories


11 March 2015
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Originally from Waterford, Peter Sirr is an Irish poet, freelance writer and part-time lecturer at Trinity College. He was director of the Irish Writers' Centre from 1991 to 2002, and was editor of Poetry Ireland Review from 2003 to 2007. He was on the shortlist twice for the Poetry Now Award for his collection Nonetheless in 2005 and for his most recent collection, The Thing Is in 2010. In 2011, he won the Michael Hartnett award for The Thing Is.

The essay below was originally published in The Dublin Review, Issue 41, Winter 2010-11. Our thanks to the Dublin Review for allowing us to reprint the original article in Epilepsy News.


When I started falling, I didn't think much of it. I took it as something the body naturally did, a way of testing itself, maybe, or a kind of trick. I'd get up in the morning and go down to the bathroom on the first landing, splash water on my face, and immediately lose consciousness. A few seconds later I'd find myself on the red lino of the bathroom, haul myself up, and go back to the sink. And then it would happen again, and again I'd pick myself up from the floor and return to the sink. (I might not have been so quick to return if I'd known that water was one of the triggers of the falling, or rather the alchemy that took place between water and light as I washed my face.) To me, falling was just part of the morning ritual. Occasionally I reported it to my mother, but the notion must have seemed too silly to register, just the kind of thing a boy could be relied on to make up. So I went on falling, giving myself a few bruises every morning, lurching backwards into the day.

I was also remarkably clumsy. My limbs sometimes seemed to have minds of their own, flailing suddenly, hitting whatever was in their path. Nor could I always rely on them to do what I wanted them to do, which meant I was pretty useless at anything that required physical coordination. Sometimes people got irritated at this clumsiness, which seemed to explode out of me. One summer, when I was eleven, we were coming back from central Brussels to the suburb where I was staying with the family of a school friend. His mother had bought large paper cones of frites and as we were getting out of the car she handed me one of the cones to bring inside. My hand shot out, spilling the cone and its contents onto the gravel. My friend's mother shook her head in annoyance. How could I have bungled such a simple task?

I think that I recall this particular episode, trivial enough in itself, because it seems to have prefigured greater, more spectacular clumsinesses to come. Towards the end of my stay in Belgium the whole family was to visit Antwerp, but on the morning of the trip I couldn't seem to get myself into the day, couldn't arrive at full consciousness. I slithered and tripped my way to the bottom of the stairs, where I managed to convey to the others that I didn't feel well enough to go. A friend had to be called to stay in the house while I went back to bed, where I slept deeply for ten hours. This was to become a familiar pattern. Looking back at that morning now wearing the white coat of hindsight, it's a simple matter to deduce what must have happened. More likely than not, I'd had a seizure during the night, probably not long before I got up, and in the few seconds the fit might have taken, an entire day's electrical energy had been burned, leaving the body numb and depleted, and desperate for sleep, as if it had run a marathon or undertaken a day's uninterrupted hard labour.

At home again, the familiar morning falling continued, and its frequency increased. And then one morning I used a different bathroom, the one at the top of the house, which was a smaller, more cramped space. When I fell, my head hit a sharp corner, and the impact split the back of my head open. I rushed down to my parents' bedroom, dripping blood all over my school uniform, and ended up in hospital a short time later getting my head stitched. Because I explained about the falling, I was given a referral to a neurologist in a children's hospital, and here began a complicated relationship with the business of falling, with my body's assertion of its independence of anything I might want to impose on it, and with the various forms of control that now entered my life.

The patrician doctor in the children's hospital had big square serious glasses and he called me the Bathroom Boy because that's where most of the falling took place. He had an idea that the falling was triggered by a special sensitivity to light, and yet he didn't seem to be entirely convinced by my story, which, I see now, is what the falling had become: a narrative to be uttered and repeated, but difficult to authenticate. There were, after all, no witnesses. I touched the back of my head and felt the thick stitches; they were real enough.

The doctor arranged for EEG tests, which became a minor torture for several years. They were always at the same time, in the afternoons, presumably because this suited the machine's timetable. Had an EEG been conducted, even once, at a time that coincided with the actual occurrence of an episode – for I was a very regular, reliable faller, early in the morning or late at night – a lot of difficulty might have been avoided. Although he didn't make a definitive diagnosis, he did prescribe sodium valproate, a drug that prevents epileptic fits by stabilizing electrical activity in the brain, and this had the immediate effect of curbing the attacks. But it was the tests that undid me. From the age of eleven through my late teens, at regular intervals I found myself sitting in the afternoons in the EEG Room as the nurse greased up my hair and attached the electrodes. And then the machine – which looked to me, with its multiple pens, like a lie detector – began transcribing the disappointing waves of my brain. A bright light was flashed in my face. I breathed deeply, in and out. Because the waves transcribed by the machine didn't show any unusual activity, and because I'd stopped falling (though this fact seemed to be of less interest), after a couple of years the doctor decided that the medication he had initially prescribed was no longer necessary.

Once the inhibiting drug was gone, my body gave full rein to the strange force that lay within it. I no longer just fell, but produced full-blown seizures, grand mal attacks with all the accessories: the foaming at the mouth, the furious twitching, eyeballs rolled back, blood pouring from my mouth where I hacked at my tongue. I never witnessed any of the big attacks myself, since I was unconscious during them. I relied on the accounts of my mother and my sisters, but these arrived piecemeal – it was not a topic of conversation in the household. We had enough medical bad news in the family already. My father was working his way through a progressive neurological disease which would kill him by the time he was fifty. His speech was going, his coordination had already gone. He couldn't walk unaided; sometimes, when he tried to stand, he swayed as we held him, staring straight ahead without seeming to see anything, strangely absent from himself. His sight was deteriorating. The time would come when he could no longer speak to us and we would sit in front of him with a large alphabet board as he tried – always unsuccessfully – to deliver his shaking hands to the letters. We talked and talked and hoped we were making some kind of sense. The only thing we did know is that every day he would be slightly worse than the day before. Something else would have shifted, some further piece of circuitry unravelled. We watched a strong energetic man turn into a desperate shadow of himself, and there was not a thing he, or we, or medicine, could do for him.

If I had a view of what my own body was doing to me, it was, at most, a suppressed anger. This was not the time for this nonsense. This was a time to be strong. Even if part of me must have feared that my body was setting out on the same betraying route as my father's, I buried the suspicion. Whatever my body was up to, I refused to think about it.

Eventually, the seizures got so bad that my mother pleaded with the consultant in the children's hospital to restore the medication. He was reluctant. He had never witnessed the big attacks, and the results of the EEGs did not suggest anything out of the normal. He listened to my mother's accounts of my daily seizures, but he was a busy man with many other patients whose evidence was more convincing, who made the steel pens dance their jagged waves when the lights were flashed in front of their eyes. By today's standards, he was remarkably incurious. His primary focus was on his machinery, and his primary trust seemed to rest in it too. But eventually he agreed, reluctantly, to prescribe the medicine. He sent a letter to be given to the GP, which I opened. In it he effectively said that my mother was suffering from anxiety because of her husband's illness and that, given the circumstances, he was recommending the same drug I'd been on before. Nowhere in the letter did he suggest that the drug was necessary. I put the note back into the envelope, re-sealed it and delivered it to the GP. The medication, when eventually acquired, once again did its job: the seizures decreased. They didn't go away completely, and the jerking hand and the staring absences made regular appearances, but my condition was controlled now, and didn't need to be thought about.

So little did it impinge on me that, as I got older, I refused to take the most rudimentary precautions. I stayed up late and got up early, I drank with abandon. This had bad consequences: I collapsed at parties, I fell in showers and baths, I had seizures in girlfriends' beds that I wouldn't hear about for months. Sometimes at night after drinking I'd start having bouts of unconsciousness as I was talking to someone. I'd give a little gasp and could feel myself slipping out and then coming to a few seconds letter. This could cause consternation and bafflement in the person I was talking to and was, to me, more disturbing than a total loss of consciousness because I could see it happening and knew from experience that it might escalate into a big attack. On one occasion, on a trip to another city, I had an attack in a bathroom and the door had to be broken down before I emerged, bloody, embarrassed and exhausted. Because I gave so little thought to my condition, I never mentioned it to anyone, never flagged the possibility of an unexpected performance. Once, swimming in the Adriatic, I began to black out, a series of seconds-long bouts of unconsciousness, but managed to get myself out of the water before the full-scale fit that often followed these minor lapses. I think this was the first time I realized that ignoring my body's signals wasn't necessarily the best idea, and that I could easily place myself in serious danger.

More often than not there was no warning, but sometimes a series of small events announced that something was on the way, like a burst of static on the radio signalling the approach of lightning. There was a tightening of the temples, and a kind of thickening of consciousness, a slowing down of time, and then a sensation, not unpleasant, that you are about to slip out of time. The violence of the event was not apparent, inside the storm. I used to worry about the lost time, in the way I still do about any passage of time that has nothing to show for it. What happens as the brain storms, and in the hours of sleep afterwards? Nothing that I can remember. There are no dreams, just the dead weight of the body sleeping, of pure recovery.

Epilepsy. Grand mal. Petit mal. Tonic-clonic. I had left my twenties before a neurologist put on paper the words I'd always known about but never confronted. The words in one sense were soothing because they told me that my fate was shared and inhabited its own little shelf in the great library of authoritative facts. To have something undiagnosed or undiagnosable is much more traumatic – as in the early years of my father's illness, with their vague diagnoses and the neurological speculation that finally, if not definitely, settled on multiple sclerosis.

With the certainty conveyed in my specialist's letter came a new prescription and a series of lifestyle recommendations. 'I know you literary types,' the neurologist told me. 'Out all night drinking in the Arts Club.' I had never darkened the door of the Arts Club, but I got the picture. Yet for all the reassurance that came with the formal diagnosis of the condition I'd been living with for the previous twenty years, I still felt still oddly detached from it. I'm sure my detachment and incuriosity is bound up with my childhood experience of the medical system: I distrusted my own epilepsy as much as that first neurologist did. It may also have been an internalization of some residual shame or embarrassment at what was – not least because of centuries, even millennia, of misinformation – a little-understood condition. For years I directed a buried anger against it, but also against hospitals, the medical system. I still get angry when I think how few neurologists there are in this country: fewer than twenty-five. Epilepsy is easily treated, but a sufferer, even with private insurance, can wait up to two years for an appointment with a neurologist, nine months for an MRI scan, anything between two months and two years for an EEG. For someone who is just beginning to realize that they may have epilepsy, the medical provision available in Ireland is no better now than it was forty years ago when I began my own career of falling.

The health system's shortcomings apart, I certainly spent a good deal of my life acting as though my body and my emotions belonged to someone else – this is part of the comedy of maleness. But now information is everywhere, and suddenly I am wandering through thickets of data and lore, boning up on what happens during my absences. The most prolonged absence is the grand mal, now stripped of its linguistic melodrama and usually referred to as tonic-clonic seizure, with the stiffening and jerking of the limbs as sudden abnormal bursts of electrical activity pass through the brain. No one knows why these bursts occur. The advance warning that many experience is called the aura, and can include lightheadedness, dizziness and a strangely altered state of mind, as if consciousness has retreated into a cave and relinquished all claim on its bodily host.

The outward drama of all these stages has tended to attract disproportionate interest, and often seemed clear evidence of some kind of possession. Depending on where you lived, the possession could be seen as sacred or demonic. Prophetic epileptics figure throughout history: Balaam the seer in the fourth book of the Pentateuch, Cassandra in the Oresteia, whose grim prophecies are accompanied by frothing at the mouth, convulsions and spitting blood. Herakleianosos, morbusherculeus, mal d'hercule – the Greeks were convinced that Hercules had epilepsy, hence 'the sickness of Hercules'. Christianity in its turn intervened to muddy the picture. There is the famous incident in the New Testament where a distraught father brings his son, displaying the classic symptoms of epilepsy, to Jesus for healing. His disciples have tried their luck but failed. Jesus heals the boy by calling out the evil spirit within him who is clearly responsible for the attacks.

Needless to say, this was not the best publicity for the disease, and led to the centuries-long habit of associating it with possession by demons – morbusdaemonicu was a popular medieval name for it. In his last painting, Raphael incorporated this New Testament story into his vision of the transfiguration of Christ on Mount Tabor. The lower-right-hand corner of the painting is taken up with the scantily clad boy in apparent mid-seizure, his arms stretched out and rigid, his eyes rolling back in his head, his anxious father grasping him from behind. On the face of it this seems an extraordinary thing for Raphael to do. What's the connection? Why is this incident given such prominence? The two events seem, on first sight, to have nothing to do with each other. The epileptic boy, maybe, enacts symbolically the death and resurrection which Jesus will himself endure; and, perhaps to signal this connection, the boy is the only figure in the painting who looks at the transfigured Christ.

Hercules, Caesar, Pope Pius IX, Joan of Arc, Flaubert, Dostoyevsky, Molière, Napoleon, Van Gogh, St Paul: it is traditional in the case of any infirmity to reach out into the world of celebrity to find famous fellow-sufferers. Those of us who are marked out by the mal des prophètes must all, therefore, be exceptional. Some have tried to make a case for a link between epilepsy and spirituality; I find myself slumped over a 1970 paper, 'Sudden religious conversions in temporal lobe epilepsy'. What about atheism and epilepsy, I wonder? Others argue for a link between epilepsy and creativity, but equally people will argue that there is a connection between certain kinds of mental illness and the artistic impulse. I'm slightly distrustful of these theories, which seem to medicalize creativity, treating it as some kind of condition. And yet, I can see some similarities in the behaviours produced by epilepsy and, in my own case, the writing of poetry. There's often, in writing as I imagine in any kind of creativity, a sudden spurt of what feels like electrical energy followed by exhaustion, a kind of unexpected possession. The Greek root of 'epilepsy' means 'to be seized, overwhelmed by surprise', and this can very happily be applied to poetry.

There is another sense in which epilepsy and poetry might be said to touch each other. Writing poems is a kind of withdrawal, a temporary absence from the world which mirrors the absence of falling. One is a neurological event without any issue; the body performs its dance and exits the stage into a feast of blankness. The other is a partly willed, partly unconscious removal of the self from its normal circuit; it is a strategic withdrawal with hope of a profitable return, a turning away in order to turn to something else, or to listen, or to place the mind where there is a possibility of some kind of fruitful accident. Poetry is, like any form of art, at some level an effort of self-completion, an attempt to compensate for the sense of absence. 'The poet is someone who feasts at the same table as other people,' Anne Carson has written. 'But at a certain point he feels a lack. He is provoked by a perception of absence within what others regard as a full and satisfactory present. His response to this discrepancy is an act of poetic creation ...'* An act, maybe, that returns the creator to the world.

I embraced poetry, but at some level I still have the deepest distrust and dislike for the faller in me, as I had for the different kind of faller in my father. When he began to fall it was because his balance was suddenly skewed, the signals were confused. He had all his strength but his brain could no longer direct it and so he stumbled, and when he walked he found himself having to clutch walls to support himself. He also began to drive in a jagged, jerky way, so much so that one day an infuriated motorist behind us leapt out from his car at a red light and performed a citizen's arrest on him, assuming he was drunk. And he kept on falling, deeper and deeper into himself. In the beginning I could walk with him by supporting him. He carried a walking stick but it had little practical value; it was more a signifier of infirmity to deflect assumptions of drunkenness. Eventually, he started to use a wheelchair. When the stairs were no longer an option, the sitting room was turned into a bedroom with a metal hospital bed – a horrible transformation, not because we cared about the room but because we knew that from now on things would only get worse.

Eventually, my father ended up in hospital again, first the Meath and then the Adelaide. This was the hardest period, the last phase of the illness, when he had begun to drift away. He could no longer respond to us except with his eyes, which remained alert, intelligent, expressive. We would talk to him, tell him whatever news we had, and sit in the silence of the room. I can remember calling in on the way to college to sit and talk, really just to make some kind of companionable noise. When my first book came out, I brought in a copy to show him. Many of the poems were about him, or addressed to him, or just written out of the sadness at what had happened to him, at the sheer precariousness of life. I think he was beyond responding to news from the world at that point. What power did I think poetry had that it could lift him back towards us?

I remember the final journey. We were at home and I was about to go into town to visit him. There was a row – the details of it are a mystery now – and because I was angry, rather than getting the bus as I usually did, I walked to the hospital. How many times have I cursed that decision? When I eventually walked through the door of the Adelaide I met the priest coming down the stairs. My father had just died. A few minutes earlier and I would have been with him. I still find it hard to accept that he could have gone without any of his family around him. Hospitals, of their nature, industrialize death; it is something that takes place in a remote, clinical space, in an unfamiliar part of the city. The place is, at least, alive inside my head. Many years later, when I lived in Christchurch Place, I used to pass through Peter Street, where the Adelaide was, and enjoy walking its brief length because I felt my father's eyes on me from an upper window as I passed. Then one day when I turned into the street I saw that the hospital had been demolished. All that was left was the façade on the street side, a doorway and windows leading into nothingness. Diggers were busy excavating, and a crane swung its arm gently overhead. A hoarding announced the arrival of a new apartment complex. It was odd to think about people going about their ordinary lives in this new space with its ghosts of hope and suffering, its long corridors and busy machinery. 'I'd almost pray some ache remain / like a flaw in the structure, something unappeasable / waiting in the fabric, between floors, in some / obstinate, secret room', I wrote later; but the more powerful feeling was to wish the new building, the new lives, well:

. . . let music roam the corridors,

joy patrol the floors, St Valentine's

stubborn heart come floating from Whitefriar street

to prevail, to undo injury, to lift my father from his bed,

let him climb down the dull red brick, effortlessly,

and run off with his life in his hands.

 *Anne Carson, Economy of the Unlost, Princeton University Press, 1999, p. 108.

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