It can be terrifying, confusing and disorienting. People who think they understand what’s happening to you… don’t. You are inspired, exhausted, and at a loss to explain how you feel. It’s difficult to describe, and frustrating to defend to those who insist it’s just your imagination.
Lewis Carroll, who wrote Alice in Wonderland, is thought to have had epilepsy and/or migraines — he may very likely have been describing his own symptoms as he penned the transformations of his characters. Perhaps Alice herself put it best: “I can’t explain myself, I’m afraid, Sir, because I’m not myself, you see.”
Alice In Wonderland Syndrome isn’t the term for someone who’s made it their life’s ambition to collect Lewis Carroll memorabilia. It’s a recognized neurological condition related to temporal lobe epilepsy (TLE) and Migraine headache.
What Is AIWS?
Dr. J. Todd, an English psychiatrist., wrote in The Syndrome of Alice in Wonderland (1955) that, “While there is wide appreciation of the fact that epileptic subjects, and their blood relatives, are prone to experience bizarre disturbances of the body image, few realize that essentially similar disorders affect migraine subjects and their families.”
He goes on to describe the experiences of patients under the general heading of “the syndrome of ‘Alice and Wonderland’, not only because it is germane as a descriptive term, but also because it has the merit of drawing attention to the fact that Lewis Carroll himself suffered from migraine.”
Alice in Wonderland Syndrome (AIWS) is called such because its namesake, the fictional Alice, experienced a range of perception-distorting changes in which she was confused about what she was seeing, hearing and feeling. A person with the condition might report feeling that her hands feel misshapen and huge, or that his feet feel very far from his body and somehow not connected. Distortions in shape or color have been described, and even the texture of familiar objects can seem altered and skewed.
Lilliputian hallucinations are another condition in which objects and people appear much smaller to the person experiencing them than they would in reality be. The allusion refers to the diminutive fictional Lilliputians who encounter Gulliver in Jonathan Swift’s Gulliver’s Travels.
These hallucinations can occur in conjunction with migraine aura, and are often associated with the idea of fairies, leprechauns or little people, since there seems to be a clear representation of a humanoid figure with of an impossibly small size during the event.
Lilliputian hallucinations can be particularly confusing when one considers that they seem to work themselves into otherwise mundane activities. Swift’s Gulliver observed the resourcefulness of the Lilliputians who were tasked with the job of dressing him: “Three hundred tailors were employed in the same manner to make me clothes; but they had another contrivance for taking my measure. I kneeled down, and they raised a ladder from the ground to my neck; upon this ladder one of them mounted, and let fall a plumb-line from my collar to the floor.”
What is an Aura?
An aura is the “early warning system” that many epileptics and migraine sufferers have that clue them into possible future headache or seizure. It’s different for everyone and, while it is most often visual in nature, can also involve sensory or motor distortions. Changes in mood, fear, physical discomfort, digestive upset, a feeling of déjà vu, or changes in one’s ability to interact with others and their environment are less common, but also associated with both migraines and seizures.
AIWS may actually occur prior to a seizure or migraine, and may also be described as part of the event, or even afterwards. They are typically more intense and visual than a sensory aura. They have been described as “hallucinogenic” in nature by Todd, and, indeed, people who have experienced them often report feeling separate from their bodies, or having experiences radically outside of what would be considered their “normal” perception of their body image.
The Creative Connection
A simlar range of feelings and symptoms may also be said to affect those with TLE: hallucinations, phantom sounds and tastes, and distorted senses are commonly-reported by those who have experienced this type of seizure. While this can be a terrifying ordeal, for many it has been a source of inspiration.
In the catalog forward to From the Storm, Artists With Temporal Lobe Epilepsy, Dr. Steven C. Shacter shared quotes from artists with TLE and auras. One artist writes, “Surroundings become surreal” and another describes the feeling of “being sucked into a constantly narrowing tunnel”.
A study called “Creative Sparks” is investigating the link between epilepsy and/or migraine. Presented last October in Melbourne at the Eighth Asian and Oceanic Epilepsy Congress, the study, which will be published sometime this year, explored the role of epilepsy and migraine in the creative process of over 120 contemporary artists. Researcher and artist Jim Chambliss has found that the expression of art frequently found in epileptics tends towards fantastic, surreal compositions and subject matter.
Spanish researchers published an article this January that suggested the young composer Frédéric Chopin probably suffered from a form of epilepsy that produced extremely vivid visual hallucinations and distortions in perception that left him both terrified and confused. Could these seizures have influenced his music?
While their study did not address that question, it contains fascinating excerpts from correspondence with Chopin’s friends and family who may have observed these episodes firsthand, and they provide tantalizing hints. George Sand, Chopin’s lover, described one such incident: i n her Histoire de Ma Vie : “Bearing the suffering with enough courage, he could not overcome the anxiety of his imagination. The monastery was full of terrors and ghosts for him, even when it went well. He did not say it, and it was necessary for me to guess. On return from my night explorations of the ruins with my children, I found him, at ten o’clock in the evening, pale in front of the piano, with wild eyes and his hair on end.”
Abraham Tamir writes of Artist Salvador Dali’s famous painting “The Persistence of Memory” (1931) in “Einstein’s Universe via Art” . The painting, which shows the distortion of time as illustrated by melting clocks, was inspired by soft Camembert cheese when Dali suffered a migraine after dinner one night. Was this a result of a migraine-induced aura? According to some sources, possibly.
In “Migraine and the Visual Arts”, Klaus Podoll counts Dali among artists called “Self-Reported Migraineurs”. It’s important to note, writes Podoll, ” Not everything which looks like a migraine aura – e.g. Pablo Picasso’s Cubist paintings – actually must have been inspired by a migraine aura. Considering the neurological evidence available for painters from the history of art, a diagnosis of migraine is likely in some cases (for example Italian painter Giorgio de Chirico, who founded the metaphysical school) and doubtful in others (like the Dutch Post-Impressionist Vincent van Gogh).”
It may have once been seen as a wholly crippling condition, suffered in silence and secret because of the fear it engendered; however, migraine and seizure auras, TLE and Alice and Wonderland Syndrome are recognized neurological conditions, and scientists are learning more about them every day.
Art, literature and music are giving us — and science — insight to the curious world of the mind. “Take care of the sense,” wrote Carroll, “and the sounds will take care of themselves.”