Back in Autumn 2018, our Co-Founder Matt Pinches, delivered a special talk on Lewis Carroll and Epilepsy. As part of National Epilepsy Day, here's the transcript of that talk...
Epilepsy, the condition and those who have to live with it is a subject very close to GSC’s heart.
Unlike many disabilities, epilepsy is not very obvious: its signs and symptoms are often very hard to detect and naturally those who suffer with it do their best to hide it from view. Historically, that has made it a condition which therefore is largely unknown by the general population, often leading to misconceptions and untruths.
Indeed it is not widely known that famous figures such as Richard Burton, Theodore Roosevelt, Danny Glover, Vincent Van Gough, Dostoevsky, Neil Young, Prince, Hugo Weaving have suffered from the condition. Epilepsy is a complex condition that takes many forms, and you can read more about that on the Meath's website.
When we began working again on Alice in Wonderland earlier in 2018 and learnt that it was possible that Lewis Carroll also had the condition we thought this was a perfect opportunity to talk about it.
Now I should say at this point that there has been no conclusive diagnosis that Lewis Carroll suffered from epilepsy in the form that is perhaps the most obvious when we think of epilepsy – the violent convulsions, shakes which happens with a tonic clonic seizure. The diagnosis logistics in the mid-Victorian age was not so advanced as to be able to run EEG tests and so on. In fact they were still experimenting with treatments including blood-letting , baths and even a treatment by mistletoe.
Victorians had an uneasy understanding of epilepsy. Patients suffering from severe epilepsy were often confined to asylums. Dickens had used the condition to demonise Oliver’s half-brother Monks in 1838 in Oliver Twist 'He advanced towards Oliver, as if with the intention of aiming a blow at him, but fell violently on the ground: writhing and foaming, in a fit.'
This very much became the definition of epilepsy in the common mind in the 19th century – an unknown and scary condition. Indeed, even in 2013, following a report by the charity Young Epilepsy, one in five children who suffer with epilepsy has been accused of being “possessed” after having a seizure. Conservative MP Laura Sandys writing in response to the findings in the Independent said “epilepsy still seems to be seen as something you keep quiet about; it still hasn’t shaken off that perception that you’re somehow possessed by the devil or demonised.”
However, Charles’ own doctors at the time seemed to have a more sympathetic view towards his condition, and his living with it may suggest that it was a more mild version of it.
Charles was born in 1832 in Daresbury, 7 miles south of Warrington in Cheshire – the third of what would be become 11 children – and I wonder if his condition began as early as this.
At a very young age Charles suffered with a stammer, which would remain with him throughout his life. One contemporary of his at Rugby School where he spent his teenage years recalled it as being a ‘slight impediment’. But it must have been a bit more than slight because in 1859 he began to see a specialist called James Hunt, and continued treatment with him well into the 1860s.
Nevertheless the impediment clearly continued to hamper his ability for public speaking, something he testifies to in many letters, and possibly what has led to the supposition that he was a bit of recluse and singleton – something that couldn’t actually be further from the truth.
His 1000s of letters, together with recollections of family and friends, testify that Charles was a very social person in small groups, particularly entertaining children. But when called upon to speak in public he was incredibly reticent. He only preached here 11 times, and it took St Mary’s Church in Guildford nearly 20 years to convince him to do that. For his account of Charles’ life Derek Hudson in his book in 1954, spoke to an parishioner of St Mary’s about Charles’ sermons here and he recalled that “the choir boys were rather sorry when Mr Dodgson preached because he took so long about it”.
Stammering is a neuro-development disorder involving many different brain systems, and it is when those neural circuits don’t work properly, stammering manifests. It is most prevalent in the very young, and especially in boys – Charles had a very severe fever as a small child which resulted in his partial deafness, but also in such a large family, may have contributed to his stammer.
Just 9 days before he died here in Guildford, he wrote to decline an offer to speak at St Mary’s:
“My note to your wife was written too briefly and hastily to explain my position with regard to help in Church. The hesitation, from which I have suffered all my life, is always worse in reading” and he adds that it is “such a strain on my nerves that I seldom attempt”
This is an incredibly heartfelt admission, and one that I know from experience is very akin to the feelings of being in front of people when you have epilepsy – you never know when a seizure might come.
Now, it is my connection that I wonder if the stammer or ‘hesitation’ as Charles called it, is actually more linked to the symptoms of epilepsy…and I’m wondering this after reading about a letter from May Barber – a child-friend of Charles’ in Morton N Cohen’s biography – who recalled what it was like to be in the presence of his stammer:
“those stammering bouts were terrifying. It wasn’t wasn’t exactly a stammer, because there was not noise, he just opened his mouth. But there was a wait…it was very curious. When he was in the middle of a story he would just stop. He fought it wonderfully”
Now to me that description of no noise and an open mouth, also suggests the symptoms of an absence seizure – which many with epilepsy encounter. An absence seizure is a brief loss and return to consciousness, stopping all activity. It can last only seconds, but they can often be mistaken for day dreaming and can often be the warning signs for the onset of a more serious seizure.
If a person’s speaking when it begins they will stop talking - even in the middle of a sentence – which does sound very similar to May Barber’s account.
Not knowing when they are coming, and not knowing if they have come and gone is indeed terrifying for the individual – what have you missed? What do people think of you? That you have lost interest in the topic being talked about? Imagine that in a work environment when people don’t know you have such episodes – employers and employees might think you’re bored or tired… giving completely the wrong impression.
Beyond the stammer and the hesitations, Charles also regularly suffered from ‘bilious headaches’ as he would record in his diaries. These would lead to his first recording of seeing an Aura in 1880.
Auras are perceptual disturbances and often manifest as the perception of a strange light, a smell, or confusing thoughts or experiences. In some they are often the warning trigger to the onset of a larger epileptic seizure to come later – possibly days later.
In 1885 Charles records again that he “experienced for the second time, that odd optical affection of seeing moving fortifications, followed by a headache”.
He records another on 20 Jan 1886 “I had an attack (‘eliptiform’ Dr Morshead called it) which left me with a sort of headache and not feeling my usual self for a week or 10 days” Indeed, from experience, the after effects of a tonic clonic seizure, takes about that time recover from.
On 6 Feb 1891 he records again: “I must have fainted just at the end of morning chapel, as I found myself, an hour afterwards, lying on the floor of the stalls…It is of course possible that it may have been epilepsy and not fainting , but Dr Brooks thinks the latter” 6 days later though he records “Nearly well again though still not free from headache. Dr B now thinks it was an epileptic attack, passing off into sleep.”
After falling down the rabbit hole, Alice exclaims “I don’t think I can remember feeling a little different. But if I’m not the same the next question is, who in the world am I?”
The British poet and author Sadi Ranson has gone on to suggest that these episodes were temporal lobe seizures – the most common form of seizure – some 60% of people with epilepsy can suffer from these. The Epilepsy Foundation describes these temporal lobe seizures as:
“the person may feel as if everything – including home and family – appears strange. Hallucinations of voices, music, people, smells, or tastes may occur. These features are called “auras” or “warnings.” They may last for just a few seconds or may continue as long as a minute or two.”
Which when you think about it, echo the experiences of Alice in her Wonderland adventure: Let’s just take one episode of the Alice story as an example.
When Alice first falls down the rabbit hole a series of very strange things happen to her. Firstly just the act of being conscious and the sensation falling a long way is something that is common to auras – “either the well was very deep or she was falling very slowly, for she had plenty of time look about her, and to wonder what was going to happen next. First she tried to look and make out what she was coming to, but it was too dark to see anything”
Then she finds the little drink me bottle and has the taste sensations of cherry tart, custard, pineapple, roast turkey, toffy, and hot buttered toast. After drinking the liquid she discovers she has shrunk to only 10 inches high which although it enables her to get through the tiny door in to the sunny garden she is now no longer big enough to reach the key off the table.
This sensory distortion led Canadian Dr John Todd in 1955 to coin the term Alice in Wonderland Syndrome for patients who experience distortions of their body image, and perceptual distortions of form, size, movement or colour.
Epilepsy takes many forms and those who live with it experience it in different ways. Though what I have come to learn about it is that for everyone it is, whatever, the extent of the condition, something that is deeply disturbing, scary and at times depersonalising.
Charles would also dip in and out of depression, especially in his later years. In 1892, he records that he is living as a hermit at The Chestnuts because everyone is full of influenza, and just before his 60th birthday records “Alas, what ill years they have been! Father forgive me”… But then two years later he was as social as he had ever been with trips to the theatre, concerts, talks and walks. Accompanying friends (often older ladies) to Oxford, London, Eastbourne and Guildford. I mention this only to illustrate how much an epilepsy sufferer can lead a seemingly ‘normal’ life to others, and for long spaces of time. Hence it’s hidden nature.
Indeed the generosity of spirit that goes hand in hand with all accounts of Charles, his sensitivity and good nature, possibly enabled him to overcome both the stammer and perhaps the opportunity to be public whilst living with the unpredictable condition of epilepsy.