Please don’t squash my tiny brain. Thank you.

The cavernoma is a thing of mystery. If you can’t make sense of it, why not make art from it?

Scans of my broken brain have been transformed into an educational 3D Minecraft map and photorealistic artwork by a Foo Fighters’ video animator – unleashing a brain chain of creativity.

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Goldapples’s brain: Chris Debney

It’s been exactly three months since I had a stroke in a pandemic – an unexpected brain blip that exposed a rare ‘raspberry’ inside my brain called a cavernoma. The troublesome Numskull was just waiting for the right moment to create a ripple. (Nailed it.)

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What goes on strike in a pandemic? My bloody brain.

This is not my first unwanted guest. A decade ago I discovered a fat devil on my shoulder. It ended surreally, with Fatty Deposito being hacked out in a sketchy hospital in Argentina; the name of the Canadian blonde whose identity I’d borrowed laminated around my wrist.

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Must be a devil between us: Fatty Deposito & Pixies’ Joey Santiago (Buenos Aires, 2010)

The thing is, that attention-seeking lipoma was never going to kill me, but this time it’s different. Clusterfuck the cavernoma means business.

The brain chain

Nearly 100 long days have passed since I’ve had a cigarette or suffered a hangover, and even longer since I’ve been sociable. But while I’ve been numbing my sobriety with Netflix nonsense in the name of recovery, my more talented friends have been busy creating playful visuals inspired by my cerebral circumstances. Now everyone can enter my brain with a gift you absolutely know you never wanted.

It all started when graphic designer (and boyfriend) Antony O’Farrell took it upon himself to create this animated GIF from my MRI scans. It’s amazing the things people piss around doing in lockdown. Click here to play ‘Spot the raspberry’ by dragging your mouse over the image.

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This inspired leading Minecraft artist and British visual storyteller Adam Clarke to create a 3D model of my brain that you can spin around, zoom in on and even enter in VR…

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. Adam’s educational Minecraft map ALSO features a 3D version of my brain made in glass. Perhaps this is a comment on fragility, or maybe it just looks damn cool.

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Yep, damn cool

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.


 

Next to Chris Debney, a director who I met in Camden Town back in the noughties. I was working at MTV and he was creating an animated Foo Fighters video. Chris played with the scans and Adam’s 3D models to create these remarkable photorealistic artworks.

These are just asking to be transformed into 3D printed paperweights or stress balls.

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Chris Debney: Me, Myself & I

For some very different work by Chris, watch Wind Horse, a beautiful short focusing on the Tibetan Prayer flags of the Himalayas.

So, who else wants to pick up the brain baton? The MRIs are currently with a girl who specialises in augmented reality games to help children with autism. I would love the scans and observations to be helpful in some way, as the cavernoma remains a rare thing of mystery.

Until then, thanks to Gregory Sweeney for this merch. Because what we really need when the world is going to shit is more totes…

Disabled in the face! & other stories

When I wrote this piece introducing my ‘raspberry in the brain’, I was waiting for a neurosurgeon in Barcelona to break down the risks of potential brain surgery to remove the cavernoma. Well, now he has.

I recorded the meeting. It’s a painful listen. I say “fuck” a lot. My Catalan surgeon searches his brain for English and opts for saying “disabled in the face!” a lot. I ask about the likelihood of “death”. He replies, “Yes!”

The brainstem is the size of your thumb. While my Clusterfuck is only one centimetre, it has an extremely challenging position in the highly sensitive, narrow brainstem, which controls critically-important functions like speaking, hearing, sight, breathing and swallowing, walking. That’s why the various neurosurgeons, from Barcelona to Bristol, all agree that it’s best to opt for a conservative ‘watch and wait’ approach before they enter. It’s all about the corridor (pathway) you choose. As the likelihood of disability is looking at anything between 5% to 60%, I’m happy to have them chill out before rushing in.

I thought I might have a few more lil’ strokes in me before the knife comes out, but they agree it’s best to get straight in there if this happens again. Leaks frazzle nerves, so a second brain bleed is expected to be much more severe, or “catastrophic” as they keep telling me – and could happen at any moment. Or never. The odds don’t lessen over time, as I had thought. How’s that for a new fucking normality? 🤪

For now, the sensations of numbness or electrical nerve endings have calmed down and come and go – although I have been tripping, it’s called ‘scintillating scotoma’ or an ocular aura and the legendary Oliver Sacks was fascinated by it – but I still feel like there is a huge weight on me. I guess we are all feeling the weight of the world right now. (Profound.)

If my motherboard malfunctions again, my mother says she will look after me in the sticks in the UK. The thought makes my brain bleed.

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British artist David Shrigley always gets how I feel

 

The taming of the shrew Jew

My ex-boyfriend says this is like 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.” The ex knows what it’s like to go through a major health scare, having been in a coma and having had half his intestines removed. He still thinks he’s in a video game and nothing is real. If only.

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’ve decided to just try to calm the whirlwind and live a happy life. The problem is that the key word is ‘moderation’. FFS.

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Moderation with a capital F

Being given a temporary break from work deadlines has been a silver lining in the raspberry beret, as I retrain my brain to learn some lifestyle changes. The two worst things for brain health are smoking and stress. It was weirdly easy to stop smoking after 30 years. I just envisioned the smoke making a beeline for the raspberry. But surely it’s no coincidence that I had a stroke in a pandemic lockdown when working – under furlough – in a toxic environment to save someone else’s business?

What would you do with a sober summer on sick leave? My original plan (after saving the world) was to master Photoshop, Spanish and something zen, maybe even start writing ‘the fucking book’ from over 20 years of scribbles. The reality has involved bingeing on Rupaul’s Drag Race, listening to weird podcasts while munching CBD gummy bears (which do nothing, however many I eat), burning my tits, reading everything I can about microdosing, and googling ‘moderation’ and whether ‘brainstem’ is one or two words. I’m still not sure.

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Microdosing book list

We did have one post-lockdown house party for my boyfriend’s birthday. It was hard-going, owing to my new sobriety, neuro fatigue and, well, drunk people. A highlight: the boy waking up pass-outs by hollering:” “You have to leave. Lisa has brain damage!”

Too fucking right I do. What a great excuse. Get out.

Let me leave you with these amazing illustrations of some of the traits of people with my invisible illness that was created by the brilliant Cavernoma Society. They excuse all my behaviour – past, present and future. (Sorry, not sorry.)

I talked previously about setting up ‘The Cavern Club’, because a fucked up head doesn’t have to be a headfuck. But I don’t need to, because the Cavernoma Society is a super-supportive UK-based charity, resource and forum. It hasn’t just provided me with ‘cavernomies’ (hoping that catches on), but went above and beyond by providing – and even funding – a second opinion from a brainstem specialist surgeon in the UK. In his lifetime he has only done two of these operations.

This surgeon’s view has been vital in making me feel confident that I am on the right recovery path. It’s interesting that looking at my scans-only, he would have opted for operating straight away (well, they do get a bit scalpel-happy), but now agrees it is better to keep me this alive as long as we can. What can I say? I have great chat. (RIP Mona Lisa.)

And after all, if you squash my Clusterfuck, who can I blame everything on?

Coming soon: Macrodosing and cavernoma? Read more:

What goes on strike in a pandemic? My bloody brain.

The life and death of Fatty Deposito RIP

Raspberry Cavernoma Awareness Day takes place each September to help spread the word about cavernoma and raise funds. I gave head in 240 stations in the UK.

2 thoughts on “Please don’t squash my tiny brain. Thank you.

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