Personal Essay

Snake pits and rabbit holes

Life with Alice in Wonderland syndrome, firsthand…

by

Jennifer Sala

A champion at introspection, Jennifer Sala details living with Alice in Wonderland syndrome – the distorted visual and spatial perception of reality and self. Funnily enough, it also comes with a healthy dose of the desire to laugh at inappropriate times

What’s so good about this?

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I have Alice in Wonderland syndrome. It’s like I find the hole, go down deeper, deeper, deeper, then I get to the end quite suddenly and pop out into the snake pit before I know what happened. I’ll describe this scientifically and anecdotally.

My perception is whack. I never know what’s actually real. I live in a constantly wavering state of “I’m a f*cking genius” and “am I insane?” I realise I am exceptionally intelligent as a fact – tried, tested, and true – but the two are not mutually exclusive by any means. I have a hard time trusting myself.

I’m prone to falling from the rabbit hole of genius into the snake pit of relative insanity. But a lot of creatives have this problem.

My brain rapid fires often. When you’re someone who revels in knowledge and facts, that’s a good thing. When your job is to relay facts and information on a deadline, that’s an even better thing. But the nuance comes when you look up from the screen, look around, and realise your actual image of the world, and how you feel in it, is not the actual reality. Do I have an actual clue? Or am I just the carnal form of a floppy disk?

I’m 5’3″ and 100 pounds. I feel seven feet tall and 300 pounds. Not that I think I’m fat, by any means. On the contrary, I’m more uncomfortable with being so small. Probably mostly because looking at my body and seeing my reality is disempowering, compared with how I feel. I feel good when I’ve been working out and have the muscle to show for it, but my health is fragile and I lose weight very easily. Having body mass echos how I feel well enough.

Let’s nerd out before I continue my story.

Inside Alice in Wonderland Syndrome

Simply, Alice in Wonderland syndrome (AIWS) is related to migraines, skewed visual perception, and religious experiences. It got this name because the writer of Alice’s Adventures in Wonderland, Lewis Carroll, is believed to have had it, inspiring the story.

While Alice evidently used nootropics – psychoactive and hallucinogenic substances – in the book, her distorted experiences are highly indicative of AIWS. Understandably, Carroll may have been relating the symptoms to being like taking hallucinogens, or playing on hallucinogens intensifying the symptoms. Carroll reported many migraine symptoms, including bilious headache (migraine due to liver disorder – I’ve had these, and horribly), migraine auras, and time distortions. My hand is raised.

Food sensitivity wasn’t necessarily a consideration in Carroll’s day like it is now, but I can’t help but wonder if he didn’t notice a correlation between eating or drinking certain things and experiencing symptoms. Maybe the presumed hallucinogens were really as innocuous as an actual piece of cake. Watch me eat Chinese takeout and be warped for three days.

While science wasn’t up on this condition in Carroll’s time, and barely is even today – there are no set-in-stone diagnostic guidelines, and it can be caused by several conditions, just as migraines can – we have all kinds of fancy terminology for the symptoms now.

Derealisation is dissociation from the environment. It’s not being emotionally detached, but the feeling of not being where you are. Depersonalisation, on the other hand, is the feeling of “who in the world am I?” This is often me. It is why I can hyperfocus and even ghostwrite – I don’t need to be present in myself. I like writing nonfiction because I don’t need a sense of self. I love who I am when I feel myself, but I also love what I can do when I’m not stuck in worldly carnation. The curse is a gift, and I’m sure Carroll understood this, too.

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Macrosomatognosia is perceiving yourself as bigger than you are. For Alice, too big for the house. while microsomatognosia is perceiving yourself as smaller than you are. For Alice, as small as a mouse.

Distortions of time and space are also common and illustrated in the books. For me, this is usually related with fight or flight response. It’s saved me more than once. I can hold an unusual presence of mind in dire situations as time slows down and I’m able to coordinate action in a split second. 

One example is when I lost control on black ice. I know it all happened within maybe three or four seconds, but it felt like a minute time moved so slowly. I was able to keep rationale and knew okay, get off the gas, don’t brake, just keep steering where you want to go and though I was spiraling and fishtailing through the dark, I was able to keep track of the direction I needed to go until the pitch of the road changed and the truck got back on track. 

I also experienced this a few times when horses went rogue. I can actually think of five instances where this time distortion anomaly saved me. Fortunately, my perception of space was not “adversely” affected. I was outside of myself, but that was an advantage. It’s when this happens under normal circumstances that it’s disconcerting.

Dysmetropsia (the overly simplified name science has for AIWS) can be broken into two subcategories: marcopsia (people and things look larger than they are) and micropsia (people and things look smaller than they are). Alice in Wonderland syndrome is a way more accurate depiction.

Then there’s telopsia and pelopsia, where things look farther or nearer than they are, respectively. Suuuper fun when you’re driving. This is a problem for me in the dark with lights. I have no idea where the lights actually are, or where I am relative to them.

Many of these are most profound for me when I go to a new environment. Until I’ve been somewhere a few times and have taken in the surroundings, everything is distorted – a myriad of these symptoms, in true Alice in Wonderland fashion. I find myself blocking out the world around me, choosing tunnel vision, when I’m unfamiliar with a place. I’ve even caught myself going somewhere over and over before I realise I’ve never actually looked around, trying to avoid the distortions. Recently, I realised I’ve been doing that with the small grocer I’ve been going to for almost ten years. Keep your eyes on the goods before you, Jen, don’t look up, don’t look around.

— Other names for Alice in Wonderland syndrome

Todd’s syndrome Dr. John Todd is a British psych doctor who did notable work on the connection between Lewis Carroll’s migraines and the condition back in the fifties.

Lilliputian hallucinations The word Lilliputian comes from Jonathan Swift’s 1726 novel, Gulliver’s Travels. Lilliput is a fictional island whose people, the Lilliputians, stand only about six inches high.

There are other symptoms associated – a lot of big words and nuance involved. The diagnostic guidelines are up in the air. There are three ‘types’ in the AIWS spectrum, but things like that annoy me. I dunno why. I’m sure it helps doctors, but when it’s you who’s afflicted – who cares?

More than just perception in time and space being distorted, auditory hallucinations are a thing. This can contribute to the “religious experience element” involved. More on that later.

Another fun symptom is the desire to laugh at inappropriate times. One instance from recently, a massacre happened in my bathroom. I live in an old house and, long story short, something killed and ate something else in my bathroom one night. I had to clean it up, which was horrific. I stood in the doorway for like five minutes laughing as I summoned the fortitude to tackle the crime scene cleanup.

Another fun symptom is the desire to laugh at inappropriate times.

Time to go viral: AIWS is associated with both infectious disease and epilepsy but epilepsy can be due to infections as well. Viruses associated with the syndrome include Epstein Barr, Cytomegalovirus, and Flu Type A. Associated bacterial infections include typhoid and streptococcus, as well as two others which I have, mycoplasma and neuroborreliosis. They always exacerbate my symptoms when they flare. Parainfectious vasculitis (inflammation in vessels due to infection) and other infections like certain parasites can also cause AIWS.

Other brain disorders, besides epilepsy and infection, associated with AIWS are glioblastoma and encephalomyelitis. This is an inflammation of the neural sheathing in the brain — like the rubber coating on an electrical wire. The main types of epilepsy linked to AIWS are temporal lobe and frontal lobe epilepsy. It’s important to note, other than the dramatic seizures most people associate with epilepsy, there are dozens of types of epilepsy. Off the top of my head, I think it’s 86? I’ve had some odd ones.

Acid trips and withdrawal are also associated. Thanks, but no thanks. I wouldn’t dare.

Going back to the religious experience aspect, this is mostly associated with temporal lobe epilepsy, and can lead to the hallucinations and distortions. Many cult leaders and such have been found to have temporal lobe epilepsy, even AIWS. I can’t help but wonder if “having TLE” really just means, at least sometimes, you are spiritually intuitive. But a lot of cult leaders are batshit, so maybe not. It’s a fine line.

Many cult leaders and such have been found to have temporal lobe epilepsy, even AIWS.

This is where my confusion lies. Am I hallucinating, or am I actually clairvoyant? I’m a firm believer in spirituality, because I’ve seen real life results. But also, I know my brain is wonky. How ever would you know the difference? This is the journey of my life.

In the end, does it matter? As long as you do no harm and everything works out, who cares? I’m damn talented, damn smart, and damn compassionate. I’m highly sensitive to energies, and that is, in ways, a superpower.

I guess it’s about coming into yourself. Accepting your reality for what it is. Know your damaging triggers and know how to use your unique reality for good.

Knowledge is power, loving yourself is power, loving life is power, embracing change is power. I think, honestly, this keeps my mind open and I’ve gotten awful good at channeling peace to not let the “crazies” get out of control.

The problem comes when I get too stressed and lose touch with reality, almost like a counterproductive self preservation thing. I can be prone to being like I NEED CHANGE NOW and it ends up taking me from the rabbit hole of seeking positive change into the snake pit, taking drastic plunges to change the minor circumstances.

Don’t do that, Jen. The adventure starts with a single step.

Learning to deal with distorted reality is an ongoing challenge, ever evolving, but always taking me to learn new, more beautiful things about myself and the world. I almost think, sometimes, my understanding is greater. Like I can see beyond face value and indulge in alternative perspectives. I am a champion at introspection.

Maybe I’m not challenged at all… as long as I can avoid seizures and the other infection-related complications. Life can still be good, even if you laugh at your great-uncle’s funeral or are totally convinced the plane is flying in a circle when it isn’t. If you can learn to embrace your differences as gifts, magic can happen and you can still find happiness.

What’s so good about this?

We’re all different and no two brains are the same – this we already know – but the vast differences in how our brains compensate, interpret, signal, react, and communicate can be astounding. AIWS is no exception to the wondrous ways the mind and brain come up with to perceive reality. It could be debilitating, especially if you let it rattle you too much, but often it is mostly just a super entertaining and interesting way to live and perceive the world. This is just a friendly reminder that it’s okay if your brain is different. It’s about coming into yourself… and knowing how to use your unique reality for good.

Meet the writer

Jennifer Sala is a research writer in Ellsworth, Maine. She’s written for Wondermind, Discover Magazine and HerbRally, among others, and has a public Medium page @jennifer.l.sala. She published a short book, A Holistic Perspective On Lyme Disease & Co-infections based on her research and experience coping with and managing chronic infections – ones that tried to hijack her brain for years and destroy her kidneys but she’ll have none of that nonsense taking her down. She’s a practising shaman and has worked on construction sites, an organic farm, and in a barn of 20+ horses. But nerding out on facts and theories is her superpower, so sharing knowledge with the masses in the form of writing is her absolute favourite thing to do! Follow @JenWritesNerdy