The girl with kaleidoscope eyes
Imagine your brain exploding into fractals and finding out things will never be the same again. I used a sudden stroke and diagnosis of a rare ‘Clusterfuck’ in my brainstem to unleash creativity in others. Welcome to the world of living with Cavernoma
If life splinters and you hallucinate triangles,
make a kaleidoscope.
I once got run over after uttering the sentence, “I don’t mind Maroon 5”. Now I’m careful what I say before I dart across roads. You never know what terrible words might be your last.
Any one of us could drop dead at any point. But imagine knowing you have extremely high odds of a stroke at any moment – meaning you’d never be able to walk, talk or even breathe again. How would you live?
In The Hitchhiker’s Guide to the Galaxy, 42 is the meaning of life. When I hit 42, I was forced to find it. Because my brain had its own Big Bang – and a ‘raspberry’ was found in my brain.
Stroke or Hangover?
It was May 2020 and we were just starting to emerge from an extreme lockdown in Barcelona. A morning after the boozy night before, I woke with the usual Hangover Fear. But I was afraid of the wrong thing.
Alternating ibuprofen and pork sandwich bites like any good Jewish girl, I had a sudden wave of vertigo. A rush of blood flavour into my mouth and a total loss of feeling on my left side. I panicked and ran to my boyfriend, manically asking if my teeth were bleeding, falling out. “Has my ear come off?” I reached for my chest. I couldn’t feel it. “Is my left tit loose?” For some reason, I put this down to a bizarre strain of coronavirus.
Not that Covid-19 makes your tits fall off.
I pulled it together and went for a long walk in the allocated hours in which we were allowed out of our homes – and then some cheese tasting. As all good gluttons do while they’re having a stroke. Still numb, it was two days before I picked up the guts to pop into Urgencias (A&E). Because you know where you don’t want to be when a deadly virus takes over the globe? A hospital.
It was harrowing. The only woman on a makeshift 50-bed ICU ward, I was barricaded by Covid-suffering elderly men on ventilators, angry, choking, unable to breathe. Some were drunk and abusive, demanding to get back on the street. Some will sadly not have survived. Shaking with fear, after two days of staying awake by phoning different time zones and boshing the Lorazepam that two Doogie Howsers were pushing, I was finally wheeled off. I tried (and failed) to untangle my necklaces and piercings as I was rushed inside a brain scanner and injected with contrast dye
And that’s when one sliding (hospital) doors moment changed everything.
The taming of the shrew Jew
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 ’90s, 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 from the “cock-and-coke-noughties”, and misbehaved my way around the BBC, National Geographic, Vice, and so on. Growing up not required.
Obsessively I travelled the world, living in Argentina, New Zealand, and now Barcelona – exploring the sleaziest dives imaginable. I crossed Australia with Slipknot, ran illegal parties in an Argentine graveyard, built treehouses with endangered gibbons in Laos (they were crap with a Phillips screwdriver), and worked in a Kiwi national park as a candle-sculptor for an ex-supermodel – I was deported for awful wrap-party behaviour after directing soft porn. Oh and I’ve been the voice of Playboy TV. I would tell my brother, “Be careful what you wank to!”
I’ve often joked about treating my body like a squat, not a temple. Often following it with: “If you want to come inside, you better shut up.”
It’s amazing I got to 42 without a major health scare – other than 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 the ’90s in Gloucestershire. Only two of these things 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 scientific name for the benign tumour in my brain is a Cavernoma. Resembling a raspberry, this cluster of abnormal blood vessels is more common than you think – an estimated one in 600 of us have this rare beast.
For most people it isn’t a problem, unless the raspberry ripples. If its thin walls break and it erupts like a volcano, it’s then rendered active.
It’s also a problem if – like me – you have one smack in your motherboard. Clusterfuck has set up shop in the highly sensitive, narrow base of my brainstem. Where all nerve endings and essential tissues exist. The thumb-size brainstem controls critical functions like speech, hearing, sight, walking – and even breathing and swallowing. Let us not forget that there’s a skull in the way too. The brainstem is the hardest place to operate. Because if even the most accomplished brain surgeon tries to get in there, they’re likely to hit all that wiring and frazzle nerves anyway.
In the aftermath, I was kept dosed up on benzos at Barcelona’s famous modernist hospital, Sant Pau. The food was all yellow, but that’s just Spain, and the rooms were lush enough that on leaving I asked where I could “check out”. Hola Lorazepam.
Finally I was discharged, and told a surgeon would get in touch to break down the risks of brain surgery. Wait, what?
It seemed I had a very serious decision coming up. A game of Would you rather? Just replace “have a mermaid’s tail or fish head?” with “have brain surgery or live with an 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 his brain for English and opts for telling me that I will be “disabled in the face!” I ask about the likelihood of death. He replies, “Yes!”
The neurosurgeons take the decision out of my hands. As the likelihood of disability after surgery can be 60%, or worse, they won’t rush in. Yet, they tell me a second brain bleed will be much more “catastrophic”. Leaks frazzle nerves, and I’ve already had some brain damage. They tell me it could happen at any moment. The odds don’t lessen over time. They tell me this is my new normal. They tell me to try to lead a “nice life”.
Bottom line: this means I’m chronic, incurable and inoperable. I will be monitored forevermore with regular MRIs to check Clusterfuck isn’t reproducing, growing, oozing or worse. And that is the point 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.
Overnight my independence disappeared.
I was forced to shapeshift from being the Last One Standing, jumping from one warehouse roof to another, to Not Socialising At All. Normski would never need to holler “get that girl a taxi!” at 11am again.
I lost my job (which would turn out to be a stroke of luck). The future went from limitless to bounded. I can’t get travel insurance. I find it hard to swallow, but 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 and had half his intestines removed. He still thinks he’s in a video game. He compared my diagnosis to the sword of Damocles.
“Damocles was forced to sit under a sword suspended by one hair to show impending doom and the instability 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 toxins, from smoking and whiskey to chronically awful colleagues.
Dealing with a life-changing diagnosis like this is compared with the five stages of grief: denial, anger, bargaining, depression and acceptance. I’m hoping I’ve fast-tracked past stage four, but do have sad days. Most days, I’m scared. I might be one of the only people who prays for lockdown. No FOMO, you see.
I’ve been warned that if my blood pressure rises to what most people consider normal, it’s time to go to A&E. Imagine this as the opposite of that film Crank with Jason Statham where he has to keep his heart rate up or he dies. Statham gets to snort coke and have sex. Not me.
Today, I’m learning to cope with weird flavours, smells, sounds and sensations, and the huge weight of a new anxiety. Unable to booze through the anguish, my nerves are shot. Psilocybin is my new friend.
My poor boyfriend takes me everywhere in case I drop to the ground at any point. I’m 44 and don’t leave the house without him. And I never go out without the ridiculous laminated card adorned with raspberries he made, which explains my condition in various languages. In case anyone finds me unconscious on the street. (Or we want to try for a hotel room upgrade. There are some perks, after all.)
My mother says she will look after me in the sticks in the UK if my motherboard malfunctions again. The thought makes my brain bleed.
But at least I’m still talking. The neurologist shook my hand for not losing my strength or speech. My partner jokes that I should ask if they can slow me down 50%. I mean, I have said all the words. A lot.
It does help to know this is not my fault. My stroke wasn’t your everyday bad behaviour-induced ischemic stroke (a blood clot causing blockages), or even a mini-stroke (which sounds cuter, but is just a warning sign). What I’ve had is a hemorrhagic stroke, a brain bleed brought on by the raspberry-shaped malformation. Apparently, even after all I’ve put myself through, my lungs, liver and kidneys are all perfect. WTAF?
And there are some other perks. Like tripping. The amazingly-named scintillating scotoma can take you unawares. One moment you’re ordering a drink, and the next, the person you’re speaking to has shattered into triangles. You can’t see your phone to get help, but it’s okay if you’re sitting down. It doesn’t last longer than an hour. Once you get used to seeing life with kaleidoscopic vision, you learn to enjoy the display.
At regular MRI and EEG appointments, the neurologist checks if I have Alice in Wonderland syndrome by asking if I see “little people and little animals”.
I want to reply, “I see dead people”.
But never do.
On the plus side, my PTSD and brain damage is an excuse to get 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. What a great excuse. Get out.
I’m taking my lead from how Michael J Fox deals with his Parkinson’s on Curb Your Enthusiasm. As he dribbles and shakes, knocking drinks on people, Larry David questions if Fox is an asshole, or is this Parkinson’s? He can’t have carte blanche just because he has Parkinson’s – can he?
Along these lines, I’m up for a game of Cunt or Cavernoma?.
It’s not easy to remain positive. It’s a conscious effort to try to learn from a difficult experience. And to have fun. But I know that it’s not Game Over.
Creative brain chain
Tales of metamorphosis have always fascinated me. As I started to see the world in kaleidoscopic vision, as a series of shapeshifting fractals, I started to wonder: If I couldn’t make sense of this mysterious intruder, why not make art from it?
While my brain was busy reabsorbing blood, my talented friends got playful, creating visuals inspired by my cerebral circumstances.
It all started when graphic designer Antony O’Farrell created an animated GIF from my MRI scans. It’s amazing what people piss around with during lockdown. Click here to play ‘Spot the Raspberry’ by dragging your mouse over the image.
This inspired leading Minecraft artist and British visual storyteller Adam Clarke to create a 3D model of my brain you can spin, zoom in on, and even enter in VR.
But the Wiz didn’t stop there. Watch below as Adam breaks down the secrets of his digital alchemy. This is for anyone who wants to learn how to turn a 2D brain scan into 3D – or just go up my nose.
I like to call Adam ‘The Wonderful Wizard of Minecraft’ as he’s produced some of the world’s most innovative Minecraft maps and is ‘Wizard Keen’ in Disney’s huge edutainment series, Wonder Quest. The digital noodler proves how educational video games can build brain cells, working with Tate Britain. the UN and 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 who I met in Camden Town back in the noughties. Chris played with the scans and Adam’s 3D models to create these remarkable photorealistic artworks. Chris was also responsible for the prop lightsabers on the Star Wars prequels and masks on V for Vendetta. This makes my brain feel pretty cool.
The most surreal of all was the photoshoot with portrait photographer Paola de Grenet, spurred on by glue gun ninja Jane Darroch-Riley, who made a bonkers headpiece with a raspberry at the back, from a helmet and rope. So now I’m sorted for Halloween forevermore.
Clusterfuck is an attention-seeker. One of Paola’s images of my best side was used on 240 billboards around the UK to raise awareness of Raspberry Day.
But the main silver lining in my raspberry beret has been the opportunity to build TOPIA Magazine. While everything has been sparking and firing and popping and buzzing, I had a brainwave in the shape of TOPIA. Creating this wonderland has given me something positive to focus on – an excuse to get playful with old friends and the people I’ve met along the way. This ‘World of Good’ is an outlet to showcase your brains, your essays, photography, and art.
So, now it’s time to blow your minds. Meet TOPIA.
is Lewis Carroll meets Tina Fey in the canteen at National Geographic. It’s a multicoloured cabinet of curiosities, where diverse voices report from the world’s wildest edges.
Sign up to the TOPIA newsletter for a kaleidoscopic view of culture and positive impact from a rare brain learning to rewire itself – in a world that should too.
Curious about brain raspberries?
Read: The Man Who Mistook His Wife for a Hat by Oliver Sacks
Watch: My Beautiful Broken Brain
Support: Are you one of the 0.5 percenters with a raspberry in your brain? Cavernoma Society is a UK-based charity whose kindness goes beyond what any of us think a charity really is.
What’s so good about this?
If life trips you up, shift perspective, enjoy the trip and embrace the kaleidoscope. And whatever you do, if you get intermittent pain and weakness on one side of your body, hit the hospital – even in planetary pandemic times.
Cavernoma remains a mystery. Contact Lisa if you are interested in picking up the brain chain baton to investigate or get creative with the MRI images.
Meet the writer
Lisa Goldapple is the brain behind the world of TOPIA, and a wise-cracking detective somewhere in the multiverse. She might not behave as good as gold, but thinks good is golden. Follow @LisaGoldapple to understand her rare brain – a bit – and sign up to the TOPIA newsletter, A World of Good.