When you can’t trust what you see: Life with a perception disorder

I’m 18, in my first year of undergraduate studies at the University of Alberta. It’s Easter Sunday. A group of friends from high school meet in *Jeff’s basement after our obligatory family dinners have wrapped up to play video games and drink cheap beer.

Before we call it a night, we split a joint four ways on the footpath to Jeff’s cul-de-sac. I’m not sure I feel any different, the Lucky Lager having coated my mind in a gauzy film. Brennan drops me off at home, where I still live with my parents. I sneak into the basement and go straight to bed.

In the middle of the night, I wake in a panic. It feels like I’m tumbling in slow-motion through the darkness of my room, like when as a kid I threw myself down grassy hills and rolled all the way, eyes closed, to the bottom. Whatever it is that’s happening, my mind is telling me that I should be afraid. That’s a powerful thing: a mind trying to convince a body to be afraid.

I sit up, grip the sheets and try to steady myself in this mental whirlpool. I breathe in through my nose, out through my mouth. After the pounding of my heart subsides and my head stops spinning, I close my eyes again and fall back asleep.

The next morning, the episode remains fresh in my mind. I look around the room and feel my vision short-circuiting in the sparse light. I get dressed and walk down the hall to the bathroom. The walls undulate beside me and each step seems to take longer than expected to reach the floor. I’m in a dream world, a Wonderland-gone-bad just beyond my bedroom door. And I’ve only dipped my toes in.

The truth is, I’ve never been high before. I don’t know what it’s like, and so I’m not sure if this is it. I’ve smoked weed maybe half-a-dozen times at parties or on camping trips, but never enough to do the trick, not that I could tell anyway.

I wander through this first day convinced the THC is still in my blood, in my brain. I keep to myself, spend the day in my room, fill my plate at the dinner table and bring the food back to bed. Tomorrow everything will be back to normal, I tell myself. I’ll be me again.

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But I wasn’t. It would be over two years before I would return to a sense of normalcy, to feel as though my mind had been restored to something close to its neuro-typical state. Eventually, I would discover what I was likely experiencing was Hallucinogen Persisting Perception Disorder, or HPPD.

The DSM5, the guide to mental disorder diagnoses published by the American Psychiatric Association and used around the world, estimates that 4.2 per cent of hallucinogen users are affected by the disorder (cannabis can, in fact, be classified as a hallucinogen). This may seem high for a condition that most people have never heard of, but it isn’t difficult to imagine that it may be severely under-reported because of the stigma of illicit drug use combined with that of mental illness.

The disorder is characterized by a kaleidoscope of visual disturbances, including visual snow or static, intense flashes of colour, false perceptions of movement, geometric hallucinations, afterimages and halos. These are accompanied by persistent anxiety, panic attacks, derealization, depersonalization, and depression. Treatment options range from antiepileptics to tranquilizers, but mostly amount to a shot in the dark, despite the disruptiveness of the condition.

For me, walls ripple in the corners of my eyes, floaters swim unabashedly across the monochrome surfaces of buildings and the sky, and visual static blankets my entire waking life. The halos around headlights and street lamps obscure the night. Objects lag in my periphery like the ghostly trails of shooting stars.

In a 2013 piece for The New Yorker, Darian Rolston explains that, “HPPD warps the perceptual faculties: the external senses are marred by a constellation of mostly visual distortions, while the internal ones are paralyzed by a concoction of dissociative symptoms, panic attacks, and depression. The doors of perception are not so much cleansed, as Aldous Huxley famously found after his first experience on mescaline, as they are cracked open and left askew.”

Herein lies the central conflict for a sufferer of HPPD: how one begins to perceive the external world comes to devastate the internal one. I was fully aware that what I was seeing was not actually there, and yet the panic that I felt was all too real. The stress of this contradiction becomes so great that the mind, with all its power, begins to deny everything around it. Derealization and depersonalization—the feeling that the world and the self have ceased to be real—is the brain’s way of defending itself from immense anxiety. But in summoning the power to reject the world, a vicious cycle begins, begetting more panic attacks, more severe anxiety, and ultimately depression.

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Two months after I first experience symptoms, I work up the courage to see a doctor. I shift my legs over the crisp paper covering the examination table. I tell the doctor about the weed and the very first panic attack. I explain what I’ve been seeing but emphasize what I’ve been feeling: that nothing seems real, that it’s like I’m dreaming. He listens to me, occasionally jotting down a fragment on his notepad.

When I’m done, he speaks up. “I’ve never heard of anything like this, but there’s a reason this stuff is illegal. Do you feel like you’re improving?”

I tell him about the occasional moments of clarity I’m beginning to feel.

“If it’s getting better on its own, let’s do nothing,” he says. “I’m going to order an eye exam.”

Just like that, I’m ushered back into my distorted world without so much as a referral to a mental health professional or a word of advice beyond the last thing this doctor will ever tell me: “Don’t be stupid and do drugs again.”

The eye exam comes back clean, though the optometrist notes a heightened sensitivity to light. It’s one of the only physical manifestations of what’s been happening inside my brain. In the dark, my pupils dilate to big black marbles, but in the light, they shrink to little dots in the centre of my irises, a man overboard in a comparatively giant sea of blue.

I show them to my friend Luke on our way to Fork Lake, the last trip of the summer before I leave for Vancouver to start as a second-year transfer student at the University of British Columbia. Luke has been one of my most vocal detractors up until this point. He smoked a lot of weed in high school—even got busted by the cops hotboxing his car in senior year—and he’s never heard of anyone staying messed up for longer than an extra day, maybe two. I tell him I know, he’s right, that I’ve never heard of it either.

Then I take off my sunglasses and show Luke my pupils. Pinpoints.

For a moment, at least, he believes me.

This isn’t an anti-drug PSA. This is something I was terrified to write. In part because I’d have to revisit these experiences, but also because I was worried about what people might think. Would they, like Luke, think I’m making all of this up? Would people call me “crazy”? Will the cannabis reactionaries of the world tell me the same thing the doctor did all those years ago, then brush off my experience as some small punishment for a supposedly immoral action, the “you get what you give” of recreational drug use?

But I wasn’t afraid of admitting I’d smoked weed so much as I felt silenced by the stigma of mental illness. It’s true that to this day I still hold my breath when I smell someone smoking up, but I also sincerely wish that I had the option to try cannabis products to treat some of the mental health issues I face today. That irony isn’t lost on me.

What went on in my brain back then is about as much a mystery to the scientific community as it is to me. In a 2017 article from Australasian Psychiatry, researchers concede that, “Since it was first described by Eisner and Cohen in 1964, the phenomenology of Hallucinogen Persisting Perception Disorder remains poorly understood, and the literature is limited to case reports and observational studies.” In their survey of existing research and findings on the disorder, they conclude that, “Delayed or misdiagnosis prolongs profound functional impairment and social decline, and predisposes the patient to the development of anxiety and depression and related increased risk of suicide.”

I never did consider suicide in any practical sense, but the thought of it entered my mind often. I was 18 years old, still had my entire life to live, and yet I couldn’t see the significance in any of it if I was going to be in this dream state. I couldn’t imagine holding down a job with HPPD. I couldn’t imagine falling in love with HPPD. How was I supposed to finish university or raise a child with HPPD?

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Over the course of several months, through a very strict routine of exercise, sleep and Costco green tea, I start to feel better. The improvements are small at first—a tiny decrease in visual lag, slightly shrunken halos around the streetlights at night—and it’s these little victories that keep me going.

I work out six or seven times a week, running nights in the Vancouver rain that now permeates my new life at UBC. The overcast days don’t help my visual disturbances and the sudden lack of vitamin D has my depression at a constant simmer. Edmonton is one of the sunniest cities in Canada and that’s something I took for granted.

Time becomes my biggest ally. The more of it that passes, the easier it is to ignore my symptoms and return to life as it was. Reading gets easier and I’m no longer too clouded to watch movies and TV. I binge all of Friday Night Lights, taking a job as a flag football referee in an intramural league for a little extra cash. I finish off every season of Scrubs, and even the wretched spin-off Scrubs: Interns—and quietly consider dropping the whole writing thing and enrolling in pre-med instead.

My residence-mate Andy and I take to hanging out with two students from Vancouver Film School. We go to their apartment on Commercial Drive, drink beer and watch cult films. One night, they mention they’ve picked up a few hits of salvia, a plant native to Mexico and a natural hallucinogen, from a smoke shop downtown. I’m obviously hesitant. I’ve only just regained some sense of clarity in my life. The panic attacks are gone and the anxiety is manageable. It would be completely irresponsible to jeopardize that.

We watch Chelsea do it first. All it takes is one chest full of white smoke and she’s rolling around on the floor, face beet-red. After it’s over, she confesses to hallucinating that she was the pirate ship from The Goonies, rolling around in the shallow water of the treasure cave. Mariah goes next and then it’s Andy’s turn.

I tell him I’m going to do it with him.

He hits the pipe and while his trip sets in I take my turn. I cough and laugh and feel my face heating up. I undo the top button of my shirt and feel gravity pull my body to the floor. I rock back and forth, convinced I’m on a souped-up version of the “It’s a Small World” ride from Disneyland, each passing child locked in a collective falsetto chorus.

The whole thing feels like it takes hours, but it’s over after a few minutes. I’m sweating profusely. I take off my shirt and breathe hard, become reacquainted with the room. I do all my usual checks: spin my head for visual lag, watch the walls for ripples, look down at my hands to see if they register as my own.

There are small disturbances in my vision and a lingering feeling of derealization after the trip, but it feels like my mind is fighting it off. I’m furious with myself, but also glad it isn’t worse.

When summer comes, I line up work at my hometown of St. Albert’s Public Works department and am assigned to the dig crew. We’re in charge of unearthing all the busted water mains and collapsed sewage pipes in town. When the need arises, we head to the city-operated cemetery and dig fresh graves for the afternoon’s funeral processions.

I get up early and make my way to the Public Works yard in the early morning light. I’m exhausted all the time. To try and snap out of the fog of fatigue, I take to snorting the powdered snuff tobacco my brother got me as a souvenir from Germany. I go to bed early, immediately after dinner some nights, but the damage has already been done. Every day I feel myself slipping further and further into the same fugue-like state as the previous summer.

To say working that job was irresponsible would be a gross understatement. I saw two-foot culverts down to size with a metal grinder, and take a blow torch to rusted bolts of hydrant stands 12 feet below the earth. I’m sent down into the sewer in a harness to shovel silt from the bottom into a bucket that’s hoisted up, dripping onto my head, and poured into a barrel for safe disposal. Every day I drive a half-tonne truck with a 12-foot trailer attached to it, my eyes straining to bring the entire world into focus. I have to pull over daily with panic attacks, teary-eyed and fighting for air.

Quitting the position would mean going public with my condition. It would mean telling my parents about the summer before. We’ve never talked about mental health as a family and I’m convinced they wouldn’t understand. I don’t want them to know I ever used drugs, even if it was over a year ago. I don’t want them to know that, in my mind, it’s like I never stopped.

Against all odds, I make it through the summer unscathed. I’m extremely careful on the job, diligent again about sleep and diet and exercise. The best afternoons are those when I get to lie down in the manicured grass of the cemetery and watch the static ripple and bloom in the wide-open prairie sky.

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I’ve met a few people who’ve gone through experiences similar to mine. Some of them sought treatment and ended up in inpatient programs or on a cocktail of benzodiazepines, neuroleptics and anticonvulsants, while others just dug their feet in and waited for the nightmare to end. I’ve spent hours on message boards and web groups dedicated to sufferers of HPPD and flashbacks. At first, it was a relief to know I wasn’t alone, but sometimes the negativity on these forums was more harmful than helpful.

For those of us who live or have lived with HPPD, the climb to recovery ranges from Appalachian to Himalayan. For some, it’s Sisyphean. In a literature review published in Brain Sciences in 2018, researchers found that “some of the patients fail to adapt and live with these long-lasting recurrent ‘trips,’ and a consistent fraction needs to be constantly treated.”

I’m one of the lucky ones. I never did seek the help of another medical professional. Without an official diagnosis, stubborn and alone, I simply recovered over time. While a faint static still permeates my vision and fatigue can bring on bouts of more intrusive visual disturbances, it’s been eight years since I’ve consistently experienced any other hallucinatory symptoms, or the derealization and depersonalization that makes this disorder feel so hopeless and debilitating.

Since my symptoms eased, I’ve been open about what happened and people have been nothing but kind. My wife often tells me she’s sorry it’s something I had to go through and that she wishes she could have been there, at least as someone to talk to. When I finally did tell my parents eight years after the fact in 2018, more than anything, they were sad I didn’t feel like I could confide in them at the time.

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At the end of my summer with the dig crew, I strap an array of furniture down in my dad’s truck, cover it with an orange tarp and kiss my parents goodbye. Andy is in Calgary and I arrange to pick him up on the way out west. After that, we’ll take turns driving through the Rockies, the Okanagan and down the Coquihalla to Vancouver.

The drive to Calgary is a straight shot down the QEII, but I don’t make it past Red Deer before I’m stopped in the parking lot of the Donut Mill in Gasoline Alley, huffing air from a paper bag and crying my eyes out. Another panic attack.

The next morning, Andy backs his mom’s car into the truck on his way to get his graduated driver’s license. The truck is fine, but he has a busted taillight. What’s worse is that he fails the test and I’m on my own for driving duties. He knows what I’m going through and we agree we’ll take our time and make rest stops as much as need be. We drink black coffee from truck stops and listen to loud punk rock and sing along the entire way to the West Coast.

There is a point in the Coquihalla highway that I’ll never forget. You come over the crest of a hill, about a half-hour outside of Hope, and it’s all trees as far and as high as you can see.

As we drive through the woods, I watch those mountainsides shimmer and pulsate with a beautiful, terrible green. I become convinced that, if I just make it back to Vancouver, I can get better.

I still don’t understand what happened to me on Easter Sunday of 2010. In all my searching, it seems like the scientific community still doesn’t either. What I do know is that I came out of it, and when I look back I don’t see rippling walls or colourful aberrations. I know that it happened, that it was real. I know that for an indeterminate number of others, it still is. But in my mind’s eye, in my memory—for now, at least—I don’t see it.

*Names in this story have been changed to protect privacy.