The Girl with Kaleidoscope Eyes
Imagine your brain exploding into fractals out of the blue. I used a sudden stroke and diagnosis of a rare tumour in my brainstem to unleash creativity – meet ‘Clusterfuck’ the Cavernoma.
by Lisa Goldapple
I once got run over after uttering the sentence, “I don’t mind Maroon 5”. Now I watch my mouth before darting across roads. You never know what horrific words might be your last.
Of course, anyone could drop dead at any point. But imagine knowing you have extremely high odds of a stroke at any moment, without warning – meaning you might never walk, talk, or even breathe again. How would you live?
In The Hitchhiker’s Guide to the Galaxy, 42 is the meaning of life, the universe, and everything. When I hit 42, I was forced to question all of the above. Because my brain staged its own Big Bang and an alien was discovered within.
“If life splinters and
you hallucinate triangles,
make a kaleidoscope.”
Stroke or Hangover?
It was May 2020, and Barcelona was just emerging from the world’s most extreme lockdown. One morning after the boozy online ‘House Party’ night before, I woke with the usual hangover fear. Alternating ibuprofen and pork sandwich bites, I was hit by a sudden wave of vertigo. A rush of the flavour of blood flooded my mouth.
Then my entire left side went numb.
I ran to my boyfriend, manic with panic, asking if my teeth were bleeding, falling out. I grabbed my face, reached for my chest.
“Has my ear come off?”
“What?!”
“My left tit – is it loose?”
For some reason, I put this down to a bizarre strain of coronavirus. Not that Covid makes your tits fall off.
I pulled myself together, went for a long walk during our precious government-allotted outing hour – and then a cheese tasting. Because that’s what gluttons do in the middle of a stroke.
Still numb, it was two days before I picked up the guts to pop into Urgencias (A&E) during clappy hour. Because if there’s one place you don’t want to be when a deadly virus takes over the globe, it’s a hospital.
It was harrowing. The only woman in a makeshift 50-bed ICU, I was barricaded by Covid-stricken elderly men on ventilators. Angry, choking, gasping for air. Some were drunk and abusive, desperate to get back to the streets. Some, I knew, wouldn’t make it.
Shaking with fear, I stayed awake for two days. Calling friends across time zones. Numbing the panic by boshing Lorazepam, cheerfully supplied by two baby-faced Doogie Howsers.
Suddenly, I was being rushed into the scanner, failing to untangle my necklaces as the contrast dye was injected.
That’s when one sliding (hospital) doors moment changed everything.
A Short History of Dubious Decisions
In my former life, my diary was crammed. Galleries, gigs, restaurants, bars – getting trashed. I never knew when to go home, and it got me into trouble. But I had the constitution of an ox. I thought I was invincible.
In the early nineties, I’d been a teen in suburban London, a time when rhythm was a dancer and there were no smartphones – thank fuck. I smashed work and pleasure as a scriptwriter-producer at MTV in Camden Town from the “cock-and-coke-naughties”, and misbehaved my way around the BBC, National Geographic, VICE, and so on. Growing up not required.
I obsessively travelled the world – living in Argentina, New Zealand, and now Barcelona – always gravitating toward the sleaziest dives.
I crossed Australia with Slipknot, threw illegal parties in Buenos Aires graveyards, got tangled up with Assange, escaped a hijacking in Serbia, ditched marching powder at Bolivian border control, built treehouses with endangered gibbons in Laos (they’re useless with a Phillips screwdriver), sculpted candles in silence for the supermodel who gets her tits out in Animal House, and triggered every speed camera in New Zealand. I was later deported from NZ for wrap party antics after directing soft porn masquerading as “high-concept reality”.
Oh, and I was the voice of Playboy TV. I’d warn my brother, “Be careful what you wank to!”
I’ve often joked about treating my body like a squat, not a temple – usually followed by, “If you want to come inside, you’d better shut up”.
It’s amazing I made it to 42 without a major health scare. Apart from breaking a leg falling down a Guatemalan volcano, getting headbutted by a Mexican gangster, being run over by a taxi in Girona, and driving off a cliff high and naked in Gloucestershire. Two of these made the tabloids.
But overnight, karma cashed in. And the whirlwind of my life fell still.
Clusterfuck the Cavernoma
I call it ‘Clusterfuck’, but the medical name for this rare tumour in my brain is a cavernoma. Resembling a raspberry, this cluster of abnormal blood vessels is more common than you’d think – an estimated one in 600 of us have this extraordinary beast. For most, it’s a harmless, silent guest.
Unless the raspberry ripples.
If its thin walls burst, a cavernoma erupts like a volcano and is rendered active. Now it’s a volatile, malevolent gatecrasher.
It’s especially problematic when it sets up shop smack in your motherboard, as mine did. Clusterfuck has nestled in the highly sensitive, narrow base of my brainstem. The thumb-sized hub where all nerve endings converge, it controls critical functions like speech, hearing, sight, walking – even breathing and swallowing. It is also the most treacherous terrain for surgery.
Operating here is like defusing a bomb. Even the most accomplished brain surgeon risks frying vital wiring and frazzling nerves. Goodbye words, goodbye mobility, goodbye life as I know it.
In the aftermath of my brain bleed, I was kept dosed on benzos at Barcelona’s famous modernist hospital, Sant Pau. The food was all yellow – that’s just Spain – and the rooms were lush enough that, when leaving, I asked where I could “check out”. Hola, Lorazepam.
Finally discharged, I was told a surgeon would get in touch to explain the risks of brain surgery. Wait – what?
A very serious decision loomed: a game of Would You Rather? Just replace “mermaid’s tail or fish head?” with “brain surgery or ever-present time bomb?”
I recorded my meeting with the brain surgeon.
It’s a painful listen.
I say “fuck!” a lot.
My Catalan surgeon searches for English and settles on telling me I’ll be “disabled in the face!”
I ask about the likelihood of death.
“Yes!” he replies.
The neurosurgeons take the decision out of my hands. As the likelihood of disability after surgery can be 60%, they won’t rush in. Yet they tell me my second brain bleed will be far more “catastrophic”. Leaks frazzle nerves, and I’ve already sustained some brain damage. They say this could happen at any moment, and not to let my guard down. The odds don’t lessen over time. They instruct me to sleep well, avoid stress (jokers), and lead a “nice life”.
Bottom line: I’m chronic, incurable, inoperable. I will be monitored forever with MRIs to make sure Clusterfuck isn’t reproducing, growing, oozing, or worse. And that is the point at which they will enter my bonce.
My neuro’s parting words: “Please write about the Hospital de la Santa Creu i Sant Pau. It’s one of the oldest hospitals in Europe, founded in 1402. Antoni Gaudí, the famous architect, died here after being hit by a tram.”
Erm, is that good?
At least Gaudí didn’t mention Maroon 5.
Hello Damocles
Overnight, my independence vanished.
I had to shapeshift from Last One Standing – parkouring from one east London warehouse party roof to the next – to Not Socialising At All. Normski would never again need to holler, “Get that girl a taxi!” at 11 a.m.
I lost my job (a stroke of luck). The future went from limitless to bounded. I can’t get travel insurance. I find it hard to swallow, but I present as normal. Welcome to the world of hidden disabilities.
My ex knows what it’s like to go through a major health scare – he’s been in a coma, had half his intestines removed, and often thinks he’s in a video game. He compared my shocking diagnosis to the sword of Damocles.
“Damocles was forced to sit under a sword suspended by a single hair to show impending doom and the fragility of happiness.”
It’s a weird one, being told that a popcorn could pop in your head any time. And you can’t even throw salt and sugar at it. Do you go Carpe Diem or full-on turmeric tea-yoga twat?
I’m calming the whirlwind. But the problem word is ‘moderation’. I’ve cut out some toxins, from smoking and whiskey to chronically awful colleagues.
Dealing with a life-changing diagnosis supposedly follows the five stages of grief: denial, anger, bargaining, depression, acceptance. I like to think I’ve fast-tracked past stage four, though sad days linger. Most days, I’m scared. I might be one of the few who actually prays for another lockdown. No FOMO, you see.
I’ve been warned that if my blood pressure hits what most consider normal, it’s straight to A&E. Imagine the opposite of Crank with Jason Statham: he has to keep his heart rate high to stay alive, snorting coke, having public sex, living dangerously.
Today, I’m learning to cope with weird flavours, smells, sounds, and sensations, and the weight of a new anxiety. Unable to booze through the anguish, my nerves are shot. Psilocybin is my new friend.
My poor boyfriend escorts me everywhere, just in case. I don’t leave the house alone. And I never go out without the ridiculous laminated card he made, festooned with raspberries, explaining my condition in multiple languages. In case anyone finds me unconscious on the street. Or, you know, we want a hotel room upgrade. There are some perks, after all.
My mother insists she’ll care for me in the UK if my motherboard malfunctions again. This thought alone makes my brain bleed.
But at least I’m still talking. The neurologist shook my hand for not losing speech or strength. My partner jokes I should ask if they can slow me down by 50%. I mean, I have said all the words. A lot.
Golden Linings
It helps to know this isn’t my fault. My stroke wasn’t your everyday bad-behaviour-induced ischaemic stroke (a blood clot causing blockages), or even a mini-stroke – which sounds cuter but is really just a warning sign. This was a haemorrhagic stroke, a brain bleed triggered by the raspberry-shaped malformation. And somehow, despite everything I’ve thrown at my body, my lungs, liver, and kidneys are all fine. WTAF?
There are some perks, too. Like tripping out. The wonderfully named scintillating scotoma – an obsession of Oliver Sacks – can strike without warning. One moment you’re ordering a drink, the next, the barman has shattered into triangles. You can’t see your phone to get help, so it’s best to sit it out. Once you get used to seeing life in kaleidoscopic shards, a light show behind your eyes, you learn to enjoy the display.
At my regular MRI and EEG appointments, the neurologist asks if I have Alice in Wonderland syndrome.
“Do you see little people and little animals?”
I want to reply, “I see dead people”.
But never do.
On the plus side, PTSD and brain damage are excellent excuses to bow out of anything. We had a house party for my boyfriend’s birthday. It was hard-going. After I’d finally had enough, pass-outs got a rude awakening by him hollering, “You have to leave. Lisa has brain damage!”
Too right I bloody do. Get out.
I take my lead from Michael J. Fox on Curb Your Enthusiasm. As Fox deliberately shakes and spills drinks, Larry David asks: “Is Fox an arsehole, or is this Parkinson’s?” He can’t have carte blanche – can he?
Along these lines, I’m up for a game of ‘Cunt or Cavernoma?’.
Staying positive isn’t easy. It’s a conscious effort to learn from a difficult experience. And to have fun. But I know that it’s not Game Over.
The Creative Brain Chain
Tales of metamorphosis have always fascinated me. As I began to see the world in kaleidoscopic vision – as a series of shapeshifting fractals – I wondered: if I couldn’t make sense of this mysterious intruder, why not make art from it?
While my brain busied itself reabsorbing blood, my talented friends got playful – turning my cerebral chaos into visuals.
It started when graphic designer Antony O’Farrell created an animated GIF from my MRI scans.
This inspired leading Minecraft artist and British visual storyteller Adam Clarke to create a 3D model of my brain that you can spin, zoom in on, and even enter in VR.
But the Wiz didn’t stop there. In this video, Adam breaks down the secrets of his digital alchemy – perfect for anyone who wants to learn how to turn a 2D brain scan into 3D (or just go up my nose).
I call Adam “The Wonderful Wizard of Minecraft” (read my interview with him here) as he’s produced some of the world’s most innovative Minecraft maps and plays ‘Wizard Keen’ in Disney’s huge edutainment series, Wonder Quest. The digital noodler proves how video games can build brain cells, working with Tate Britain, the UN, and the World Wildlife Fund – and now he’s got his hands on my noodle.
The Wonderful Wizard of Minecraft also created a 3D version of my brain, made in glass.
Perhaps this is a comment on fragility
Or maybe it just looks damn cool.
Next, to Christian Debney, a Foo Fighters and Simple Minds video director I met in Camden Town back in the day. Chris played with the scans and Adam’s 3D models to create these remarkable photorealistic artworks. He was also responsible for the prop lightsabres in the Star Wars prequels and the masks in V for Vendetta. This makes my brain feel pretty cool.
The most surreal was the photoshoot with portrait photographer Paola de Grenet, spurred on by glue-gun ninja Jane Darroch-Riley, who crafted a bonkers headpiece with a raspberry at the back – made from a helmet and rope. Now I’m set for Halloween forevermore.
Clusterfuck is an attention-seeker. One of Paola’s images of my best side is used every year on more than 2,000 billboards across the UK to raise awareness of Raspberry Day.
The silver lining in my raspberry beret? While my brain is popping, fizzing and buzzing, I’m still capable of creating sparks.
Goldapple UnpluggedTMI is a prism – a way of helping me remember all the weird, wonderful, and wrecked parts of life before I can’t articulate them. Nuggets are served raw. Because if anything is going to save the world, it’s us falling in love with the chaos, the unsanitised, the imperfect. Those are the golden bits.
Cavernoma remains a mystery. But I hope to shed some light on it for the 0.5 percenters with a raspberry in our brains.
After all, imagine knowing you have extremely high odds of a stroke at any moment – meaning you might never walk, talk, or even breathe again.
How would you live?
Disclaimer: If there are typos, I blame brain damage.
What’s the point of this?
This story is meant to inspire. A bonkers reminder that if life trips you up, shift perspective, and embrace the kaleidoscope. (Though if your body goes numb on one side, go to hospital.) Fancy picking up the brain-chain baton for research – or having a bit of fun with Lisa Goldapple’s MRI images? Click the button below and let’s get creative.
Meet the writer
Lisa Goldapple is the creative brain behind various TV shows, indie mags, and wine and spirits campaigns. The Barcelona-based writer and director has produced shows for MTV, BBC, Vice, TVNZ, National Geographic, and more. She created the social good platform Atlas of the Future, the Wonderland-inspired TOPIA Magazine, and NOSH.
