Remembering epilepsy

Catalogue essay for Susan Aldworth: The Portrait Anatomised – National Portrait Gallery, London 2013

Max Eilenberg

Illuminating the Self, 2020
Hatton Gallery and Vane, Newcastle
18 January – 9 May 2020


I had my first epileptic fit on an overnight ferry to Hamburg. I guess it would have been around Easter 1970. I was sixteen, at the start of a school exchange week for German A-level. We were woken early. I felt exhausted: the night had been short and rough; the inside cabin was hot and airless and dimly lit. I tried to get dressed, but it wasn’t easy. I couldn’t seem to manage the simplest things. I kept blacking out and dropping clothes, or throwing them around; I found myself on the floor; I got up and tried again, tried to concentrate, but it just got worse. The next thing I remember is a teacher kneeling beside me, saying I’d fainted; then a few seconds of being helped across a gangway to the quay where a coach was waiting; then the cool window glass as I rested my head against it. I had a terrible headache. I needed to sleep.

After my return to England, sometime in the early days of my diagnosis, it was put to my parents that I might benefit from being trepanned. This was probably more alarming to them than it was to me. For a start, I didn’t know that it meant having a hole drilled in my skull. In any case, my attention was entirely devoted to muddling along through that bewildering late-adolescent haze of hormonal overdrive and crippling self-consciousness, to which inexplicable twitches, sudden blackouts and explosive convulsions had suddenly been added. It was a stage when my body was definitely enforcing compliance. It wasn’t that I was for or against the idea; rather, the very notion that I might have control over anything seemed far from the reality.

Happily, my parents decided to seek a second opinion. I’ll always be grateful to them. Nevertheless, some part of me continues to wonder what would have happened if they hadn’t done so, or if they’d not been able to, or if we’d lived in a different age. How would things have turned out? Would it have cured the epilepsy? Who would I have been afterwards?

Of course, these are pointless speculations. But the thought of that operation, which to some extent I regard myself as having missed only by good fortune and a matter of timing, has left a sort of phantom scar in my memory, a trace of what might have been. In particular it’s left me with a slightly morbid fascination with diagnoses, therapies and cures that no longer seem – how shall I say? – entirely appropriate.

Trepanning, for instance, might have worked pretty well had I indeed been the victim of sacred possession by a god or (more usually) demon. This view of epilepsy, which predates the Babylonians and has a long and influential history, explains why the operation is the earliest known treatment for the condition: it provides a passage for the evil spirit to leave the body.

Among a host of other remedies for the falling sickness (or evil), I am happy to have avoided the competing cures of religion, magic, superstition, astrology and alchemy – a pharmacopeia that, in addition to spells, incantations and charms, includes spit-roasted lizard, hare’s rennet, stomach of weasel, liver of he-goat, stones found in the stomach of swallows at the waxing moon, stork dung, filings of iron sharpened on whetstone from Naxus, lion fat, camel brain, a vulture that’s eaten human flesh, twenty-one red flies from a corpse (but fewer to weak patients), and a suckling puppy taken in wine and myrrh after its head and feet have been cut off.[1] For sheer nausea, little, however, beats drinking hot blood from the freshly cut throat of a gladiator ­– a ‘miserable aid made tolerable by a malady still more miserable’, as one Roman writer sympathetically described it,[2] although Pliny the Elder (with whom I tend to agree) condemned it as a revolting crime against nature.[3]

It would have been less unpleasant to be worshipped as a shaman or prophet, though there was the risk of being burnt as a witch, forced to an exorcism or incarcerated as a lunatic (the moon having seized me). Protection was said to come from St Valentine, patron saint of epileptics, or St John the Baptist (who appropriately lost his head); relics of the Magi were extremely good. So too were a variety of talismans, amulets and rings, especially those containing ass’s hoof: there are some with a mysterious inscription to a god called Ananizapta who sounds particularly appealing.

Such superstitions are not easily shaken off. Belief in the efficacy of ‘cramp rings’, for instance – which date back to the supposedly miraculous powers of Edward the Confessor – persisted well into Victorian times. A contributor to Notes and Queries at the end of the nineteenth century wrote of his encounter with a plumber from Salisbury who wore lead rings on each hand. Asked why, the plumber said that ‘if a piece of lead were cut from a coffin at the exact time of the full moon and made into a ring, the wearer would be cured of the fits. On my pointing to the considerable number of rings that he was wearing, which he admitted had exerted no curative action, he explained that the sexton had not hit upon the right time for cutting the lead from the coffin.’[4]

Wearing lead jewellery, however obtained, is of course inadvisable – but I love this vignette, with its simple explanation for the failure of the treatment and its triumph of credulous hope over experience. ‘Had not hit upon the right time’ captures a fondly touching faith in what sounds now more like the unreconstructed occultism of a bygone age. But in fact it’s not bygone at all. Even today the esoteric approach to treatment has its adherents: David B.’s brilliant graphic memoir Epileptic is the story of family desperately seeking cures in every corner of hermetic philosophy from Rosicrucianism to exorcism.[5] (This is not to say that modern medical science is necessarily more effective. An equally moving account of its failure to control an acute form of epilepsy is William Fiennes’ memoir, The Music Room.[6])

For all the astonishing afterlife of magic and superstition, the scientific reaction started long ago with the Hippocratic insistence that epilepsy, far from being ‘the sacred disease’,[7] was simply a disorder of the humours. As the pathological diagnosis changed through time, always in an on-going battle with the superstitions it sought to refute, so inevitably did the treatments. Scientific or not, I’m really glad to have avoided these too –not least because trepanning, inevitably, remained a favourite. (It relieved the cause: thick phlegm).

The alternatives, at least, involved no drinking of human blood; that of the turtle, however, was recommended for oral administration, drop by drop. The reliable and compendious Pliny also lists emetics (hellebore and radishes,[8] a reduction of wild poppies[9]) and enemas (beaver oil, honey and water), bleeding and baths. Cauterization could help. Among a host of herbal, dietary and other remedies, many (a dose of seal’s rennet; lizard skin; weasel’s brain taken in drink)[10] are indistinguishable from those promoted by the superstitious, and equally vile. Spitting at epileptics was encouraged to avoid contagion; likewise, locking them up in insane asylums. Quacks had a field day. Through the eighteenth and nineteenth centuries, it was a widely accepted scientific theory that masturbation was the primary cause. Castration or cliterodectimy were indicated. As late as 1880, the British Medical Association’s annual meeting at Cambridge heard of the great results.[11] It almost makes trepanning sound attractive.

Until the development of modern neurology, indeed, the superstitious and the scientific were so closely intertwined that it’s frequently hard to tell them apart. If as a result medical understanding was compromised, so too was diagnosis – a mixture of prejudice and observation were the only available tools in cases of the falling sickness (or evil). Epilepsy was not always distinguishable from other conditions; epileptics looked like anyone else until they had a fit; it wasn’t easy to distinguish a real epileptic from a fake. This had some advantages. Plato in his Laws proposed a one-year sale-or-return guarantee for slaves who turned out to be epileptic – twice as long as any other (doctors, naturally, couldn’t claim the refund).[12] In 1463 a man on trial for abducting a girl was found not guilty because he’d let her alone on finding she was epileptic: he thought it was catching.[13] Beggars and cheats duped the charitable by eating soap to foam at the mouth; Hugo’s The Hunchback of Notre Dame teems with them. Kipling has a delicious poem, punningly entitled ‘The Post That Fitted’, about Subaltern Sleary who faked epilepsy in order to get out of his unpromising engagement to poor Minnie Boffkin: ‘Of his modus operandi only this much I could gather: / “Pears’s shaving sticks will give you little taste and lots of lather.”‘ (The result is all that Sleary hoped for – ‘Minnie weepingly returned his ring, / Told him his “unhappy weakness” stopped all thought of marrying.’)[14]

It’s one of the minor disadvantages of living in our enlightened age that a ruse like this probably wouldn’t work today – although in fact it might. Letting people know you’re epileptic is a tricky business. You have to calibrate who to tell and when. Who needs to know at work, for instance; or, more important, how far do you go in a relationship before you reveal yourself? These are issues of practical and emotional weight. You’re never quite sure what you might lose: people are ill-informed, wary, even frightened; you’re conscious of some residual stigma, however slight. Minnie might still recoil.

Nevertheless, science has made great inroads, albeit with some small drawbacks. It might have been fun to be (mis)taken for a prophet, but that’s no longer an option. As William James remarked, ‘medical materialism finishes up Saint Paul by calling his vision on the road to Damascus a discharging lesion of the occipital cortex, he being an epileptic.’[15] On the other hand, at least we’re neither essentially criminal nor insane. (Criminality, like genius, Dr Lombroso asserted, ‘is a symptom of hereditary degeneration of the epileptoid variety, and is allied to moral insanity.’[16]) Things, thank goodness, have moved on. I am delighted to be living in the age of medical materialism, with neurophysiology, electrophysiology, biochemistry and pharmacology all on my side. It’s great to have my fits controlled by a twice daily dose of Epilim, even though the side effects (a sense of being dulled and weary) aren’t altogether welcome. Things are a whole lot better than they might have been.

Still, that history of epilepsy – medical, social, cultural – continues to fascinate, like the trepanning I never had. Why is it so powerful? I think the real reason lies in the impossibility of describing the actual experience of a fit. A fit is a period of blankness. We can’t remember or tell you what happened – it’s a part of our life that we will never know. There’s no use asking us. We aren’t around at the critical moment. We lose consciousness, with no idea what happens while we’re away, and no memory of it when we come back. We return bewildered to a present, and piece together the clues of what went on. What was that? Where was I? What might have happened? Others can tell us how we looked from the outside or how we came to be lying on the floor. But the only answer is, you had a fit. It leaves a lot missing.

The reality is that no one knows what’s going on. This has two consequences, personal and cultural. For the epileptic, individual memory is fractured. Memory is the first condition of identity; we are intimate with gaps, the nothing as much as the being, like the strobe lights that can set it off. But memory is also the first condition of story. Without it, nothing makes sense. The epileptic story, however, is redacted. We start a sentence and find it has a huge meaning in it. What was that about? Continuity, cause and effect, sequence, pattern, resolution: whatever you look for, it’s not there. No use asking the author – the author doesn’t know either. We can talk about the before and after, the discovery and diagnosis, the treatment, the medication, the social strategies, but the essence is a void. It’s discontinuity, interruption, absence, silence: anti-narrative. There’s no way to tell it from the inside; no reports are available from the interior. Small wonder, then, that people plugged the blanks as best they could. Society, like nature, abhors a vacuum. Magic, religion, fear, science poured in to fill it by asking, ‘What if?’  Some of their stories are terrific, but they’ve all got a hole at their heart. Trepanning is just another story, about a hole in the head. It wasn’t told in my case, but thinking about it still seems wholly fitting.

[1] For these, and more, see Owsei Temkin, The Falling Sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology, 2nd ed. (Baltimore: Johns Hopkins Press, 1971), 79-80; the sucking puppy, vulture and flies are from Pliny’s scornful catalogue of popular ‘cures’ touted by ‘quack’ magicians. See especially Pliny, Natural History, trans. W. H. S. Jones, 10 vols., vol. VIII: Libri 28-32, Loeb Classical Library (London: Heinemann, 1963), 335-37. (Book XXX, chap. 27). Also pp.151-153 (Book XXVIII, chap. 63).

[2] ‘Quidam iugulati gladiatoris calido sanguine epoto tali morbo se liberarunt; apud quos miserum auxilium tolerabile miserius malum fecit’ – his Latin, much admired by the Augustans, is famously elegant. Celsus, De medicina, trans. W. G. Spencer, 3 vols., vol. I, Loeb classical library (London1935), 338-39.

[3] There’s something refreshingly modern in Pliny’s view that ‘I do not indeed hold that life ought to be so prized that by any and every means it should be prolonged.’ Pliny, Natural History, VIII: Libri 28-32: 9. (Book 28, chapter II, para. 9).

[4] C. Tomlinson, ‘Cramp Rings,’ Notes and Queries 8th series, IX, no. 227 (1896).

[5] David B., Epileptic, trans. Kim Thompson (London: Jonathan Cape, 2005).

[6] William Fiennes, The Music Room  (London: Picador, 2009).

[7] A phrase first used as the title of one of the Hippocratic texts ca 400BC, which set out to give a more scientific explanation.

[8] Pliny, Natural History, trans. W. H. S. Jones, 10 vols., vol. VII: Libri 24-27, Loeb Classical Library (London: Heinemann, 1956). Book 25, chap. 24.

[9] ———, Natural History, trans. W. H. S. Jones, 10 vols., vol. VI: Libri 20-23, Loeb Classical Library (London: Heinemann, 1951). Book 20, chap. 79.

[10] ———, Natural History, VIII: Libri 28-32: 335-36 (Book 30, chap. 27) and 531-33 (Book 32, chap. 37).

[11] Temkin, The Falling Sickness: 230-32.

[12] Plato, Laws, trans. Robert Gregg Bury, vol. IX-X, Loeb Classical Library (London: Heinemann, 1926), 399. Vol. X. Laws, Book XI, 916 A-C.

[13] Temkin, The Falling Sickness: 114.

[14] Originally published in Kipling’s first collection, Departmental Ditties and Other Verses (1886). Rudyard Kipling, Rudyard Kipling’s Verse: Definitive Edition  (London: Hodder and Stoughton, 1940), 11-12.

[15] William James, The Varieties of Religious Experience: a study in human nature  (New York and London: Longmans, Green., 1902), 13.

[16] Ibid., 16.