Coping / corona

I wrote this for our work Teams platform to share with colleagues as we get to grips with what looks increasingly like national lockdown. Thought it was worth sharing here, too.

As you know, I have some experience of dealing with prolonged traumatic and unexpected situations, and I just started scribbling down some thoughts on coping, which might be useful.

Initially the novelty of it, the strangeness, is almost exciting – gathering resources, adrenaline flowing, all those post-apocalyptic films and books have prepped us for this, right?

But then comes suffocation, and denial – that sense that you might wake up from this shitty disaster movie you’re now living in, because this is not how life should be. Surely it’ll just stop, because someone got something wrong and we need to hit reset? It must stop. It’s not real.

But then the realisation- you’re not going to wake up from this, because this is life, get used to it, this is normal now, and you need to cope. You have to adapt. You can adapt. You are adapting.

When Casper was first ill in some ways it was easy – there was a medical protocol to follow, lots of support, the normal world fell away and we went into survival mode and just concentrated on getting him treated and looking after Nora.

That’s not the case with this. There isn’t a plan, there aren’t experts telling us exactly how to cope, and we’re trying to deal with work, family, home, emotional lives all at once, as well as the virus and that risk. And by ‘we’ I don’t mean just my family – I mean all of us, the entire country, the world, we’re all in the same boat. Or on the same ocean – our boats vary.

We can and we will emerge on the other side of this, and we will be scarred by what’s happened, but hopefully we’ll have learnt a lot of things about ourselves and each other, about our society and our culture, and some of the things that have had to change might actually improve the way we live in the future.

There will be days – and lots of them – when you struggle. And that is ok. It is ok to wobble, to despair, to cry, to be upset. Accept it, and be open about it. You’re not on your own in this, in feeling this way. Let people help, however they can. It makes it easier, trust me. People’s generosity will astound you, and if you let it your own capacity to cope will astound you too.

Caribou – Suddenly

Let’s try and write something about music again, shall we?

Dan Snaith might be the musician I’ve listened to most music by in the last 20 years. I picked up his debut album (Start Breaking My Heart) not long after meeting Emma in autumn 2001, and his albums since then have soundtracked my life – our life together – in uncanny ways. It helps that he’s about a year older than me, so makes records that reflect those life events and then releases them in time for me to have similar experiences (except he did a PhD rather than just thinking about it, made records rather than wrote about them, etc etc).

2003’s exuberant melange of psych, pop, jazz, and cascading drum samples (Up In Flames) was an epochal record of my time as a music journalist, defining my taste and the weird ‘scene’ or community I belonged to (loosely – geeky 20-something boys spread across the world, connected by the internet, adolescences defined by indie rock, now fascinated with pop, electronic, experimental music, downloading the entire history of music as fast as nascent broadband would let us and mashing it together in playlists, editorial policies, or our own records). I can still remember listening to it for the first time, in the spare bedroom of my parents’ house that I had set-up as a music room, squirming with delight every time a ridiculous sample took me by surprise. I hoovered up EPs, b-sides (“Tits & Ass: The Great Canadian Weekend”, “Air Doom”, give’r), and became a bona fide fanboy.

The Milk of Human Kindness almost passed me by at first in 2005, but then Em and I bought our first flat and moved in together in 2007, and it became our most-played record, used like a piece of statement furniture or an accent wall to stamp our style on the place and make it feel like a home. Cooking dinner? Stick Caribou on. Reading a book and sharing a bottle of wine? Stick Caribou on. Playing with the kitten? Stick Caribou on.

And a month before we got the keys he’d released Andorra, which had refined all the jittery tricks from Up In Flames, grafted them to some awesome songs, and perfected the whole electronic-psych-pop thing before pushing in new directions, with the final couple of tracks, towards that edge-of-collapse dance/electronic/jazz/kraut/whatever territory that I’ve spent the last dozen years exploring (James Holden, Floating Points, Four Tet, Daniel Avery, The Comet Is Coming, Battles, Blank Project by Neneh Cherry, Dan Deacon, Fuck Buttons, Moses Boyd, etc etc etc and on and on and on). 2007 was the final year I really thought of myself as a music journalist – the final year I wrote all the time – probably because it’s when Stylus folded, and it was also – for me – one of the best years for music in my lifetime. And Andorra was one of the best albums in one of the best years.

Fast forward through two years of career hell and minor health problems, and Swim came out in 2010 – the next best year of my life for music, and also when I sorted my career out, got married, started cycling again, began Devon Record Club, and felt like life was what it ought to be. Swim did exactly what I wanted it to, and felt like part of a tripartite of albums – alongside Four Tet and Owen Pallett – that I could call favourites in my 30s in the same way as In Sides or The Stone Roses had been when I was a teenager. Even if he was singing about relationships collapsing on “Odessa” and “Leave House”, the joy, surprise and craft on show was still delightful. We capped it off at the close of 2011 by seeing the Caribou Vibration Ensemble at All Tomorrow’s Parties in Minehead – James Holden and Kieran Hebden and Marshall Allen on stage, plus two drummers, modular synths, four-piece brass section, insanity and delirium.

Our Love in 2014 seemed like another weird synthesis with our real lives – a sonic refinement further into electronic dance territory, but crucially a reaction to having become a father, and a celebration of the way that changes you. Except that – maybe because of the very coincidence that 2014 was when Nora was born – it didn’t quite click with me emotionally or aesthetically like all the others had. “Can’t Do Without You” and “Silver” were amazing pieces of music, up there in my esteem and my heart with anything else he’s done, but nothing else really stuck or seeped under my skin. It was immaculate, but it lacked something crucial, some essence that had connected me to everything previous. Maybe it had stepped away from the edge of collapse?

And so now (and I know I’m discounting the Daphni records – I have them, I enjoy them, but they aren’t the main deal for me) we have Suddenly, a record reflecting adulthood, fatherhood, and the unexpected turns and traumas that can come along. It embraces juxtaposition and surprise, it surfs close to the edge of collapse, it feels more melancholy than anything prior but just as joyous – albeit tempered, perhaps – sometimes almost subdued and sometimes almost insane. And it comes 18 months or so after our horrific, traumatic, unexpected collision with childhood cancer, after Casper being diagnosed with LCH, and it hits me square in the feels. Because it’s a complicated record that covers diverse sonic and emotional territory, very often within the same song, and that’s how life has been since cancer entered our lives. Siblings apologising, parents lullabying, emotions and noise and changes blindsiding you, coming home to uncertainty but it still being home, moments of normal life when you dance and forget what’s happened, eulogies for things that haven’t quite passed yet, that horrific sense of the time that’s gone, that’s been tainted, that’s left ripples of pain through the future even amidst the good feelings.

I’m only three days into my relationship with this record, but I already know how rewarding it can be. I don’t know what’s happened in Dan Snaith’s life over the last few years, and I hope it’s nothing like what we’ve been through, but I’m so glad he’s caught it in music for me again.

So we took our cancer child to a music festival…

And it was alright.

In fact it was pretty good. Really good, at points.

We’d always wanted to take the kids to festivals, to give them that kind of experience at a young age, and with everything that’s happened over the last year+ we kind of just went ‘fuck it’ back in the spring, and bought tickets and a tent. We thought End of the Road might be the best bet, but the line-up for Green Man was so good this year that we couldn’t resist.

I’m glad we didn’t. Even though I’ve always (jokingly) maintained that standing in a muddy field surrounded by Shed Seven fans on drugs sounded like hell. (It still does.) Even though I’ve never camped properly before, let alone done a camping festival. (we have done All Tomorrow’s Parties a couple of times, pre-kids, but you get a chalet, so…)

So it rained – relentlessly – on the Friday, and was horrific and muddy, and Nora had more than one awful pre-schooler tantrum (including an immense one at half past midnight at the festival toilets which culminated in her yelling at me “it’s my body! It’s my decision! Don’t touch me!” when I was trying to get her onesie off and get her to have the wee that she’d requested I take her for. Yes, there were other people present. No, no one said anything. Yes, some people looked sympathetic, albeit in that ‘stupid fucker kept a 4-year-old up after midnight’ way).

But on the other days – Thursday, Saturday, Sunday – it was generally sunny and warm, and the mud dried up quickly, and the setting was exquisitely beautiful (surrounded by verdant Welsh mountains, in a natural amphitheatre with a babbling stream and a pond and gently undulating fields for camping), and the food, though expensive, was great – Dosa Deli I love you; Goan Fish Curry I love you, Los Churros Amigos I love you – and the kids’ field was brilliant, and the line-up was fabulous, and Em saw a Caitlin Moran talk, and Nora got to watch Kiki’s Delivery Service in the cinema tent, and I even got to see (at least some of a set by) the following:

These New Puritans
Villagers
Stereolab
Sharon Van Etten
Four Tet
Eels
Sons Of Kemet
Fat White Family
TVAM
Big Thief
Stella Donnelly
Emily Magpie
Poco Drom
Aldous Harding

I also got to listen to the following artists quite clearly from the tent:

Yo La Tengo
John Talabot
Father John Misty (Em got to watch this one, with sleeping Nora in the buggy, while I took Casper back to the tent)

That’s actually not a bad return considering that we had two very small children with us.

We managed Casper’s meds. We just about managed Nora’s emotions. We saw old friends, bumped into lapsed and distant ones, and made new ones too.

We’ll do it again.

Who are we if we’re not that cancer family?

We took part in a social bike ride on Saturday, jointly organised by three local community initiatives (Ride On, FreeMoovement, and Exeter Cycling Campaign). We cycled from Exeter quay to Turf Locks, Em pulling Casper in the trailer, and Nora and me each on our own bikes. We arrived last of the group of 25+ people, but everyone was incredibly impressed that Nora (still only 4 years old, remember) rode all the way herself – it’s more than 7 miles from our house to Turf!

(Afterwards I cycled home fast with Casper, jumped in the car and then fetched Em and Nora, whose little legs were understandably knackered – she made it halfway home though.)

When we got to Turf we had a spot of lunch and chatted to the people who’d ridden with us (the ‘social’ bit was the main point of the ride). I got talking to a guy called Andy who, it turned out, knows Ian, who used to be my boss and who recently rode the Nello and sought sponsorship not just for Force but also for CLIC Sargent in Casper’s name.

“This is Casper, who Ian was raising money for.”

Then I spotted Simon, Casper’s paediatric oncologist (our paediatric oncologist, I should say, because when your child has cancer, your whole family ‘has’ cancer), who had also ridden out to Turf for a spot of lunch with his daughter. Not really surprising – it was a lovely day, Simon’s a triathlete (the lunatic), and there are few nicer places to cycle to for a sandwich and a cider shandy than Turf Locks on a sunny July Saturday.

“And there’s Casper’s oncologist.”

Cancer conversation ensued. It gets everywhere.

(Though not with Simon; that wouldn’t be fair. We did talk a bit about bikes, though.)

Casper had only seen Simon two days before, when two significant things happened.

Firstly, Simon referred Casper to have his port-a-catheter removed. The port-a-catheter is, for those who don’t know, a button under his chest that looks like a third nipple, with a tube that goes from the back of it down a vein in his neck and into his heart. It’s how chemo was administered, and how bloods have been taken. He’s not had chemo in nearly nine months now, and is big enough for bloods to be taken from his arm. The port is an infection risk, his current meds are administered orally, so out it comes.

Secondly, Simon has suggested that he only needs to see Casper every month now (appointments are currently every fortnight). My understanding is that typically the paediatric oncology team meet people, see them intensively for a period of months (or years) while treatment is administered, and then say goodbye and fare well once they’re OK, seeing them perhaps once a year or so to check they’re still OK afterwards.

Casper is different – this is more like managing a longterm chronic condition than an acute cancer now, and we’re shifting to that pattern of treatment and monitoring. Casper is ready to not be seen so often, to be as close to a normal boy as possible.

The question is, are we ready?

If you’ve ever dealt with chronic depression, you’ll know that you can cling to it as if it was an intrinsic part of your character, your personality, rather than a disease that affects the shape of your character and personality. “Who will I be if I’m not depressed?” “What do I look like, sound like, and act like without depression?” You may hate this thing that’s affecting you, it may make you feel awful and unable to deal with the world, but it can become very, very hard to relinquish. I imagine bad relationships, and various other patterns of negative behaviour, are very similar.

Because even awful things can become routine, and by becoming routine become, somehow, sort of comfortable, just through familiarity and repetition. Very few things are 100% bad; we’ve received a lot of love and support from the medical team, and removing that (even if not fully) feels scary, for instance.

It’s the same with Casper’s cancer; who will Em be if she’s not taking him to hospital all the time? Who will we be as a family? We didn’t want to be “that cancer family” when this began, and we still don’t, but… We also are that cancer family, and the repercussions of this last a lot longer than the diagnosis or initial treatment. Casper is 18 months old next week – we’ve barely existed as a family of four without cancer being involved. Despite the frequency of appointments dropping and the prospect of his port being removed soon, we are not finished with cancer and cancer is not finished with us.

In other news, Neil at work is cycling LEJOG next week, and raising money for a charity that research the family of diseases that Casper is affected by. You should sponsor him.

12 months of childhood cancer

Depending how you look at it (Christmas or Easter, essentially) either today or tomorrow is 12 months since this whole cancer thing started. Tomorrow by date, today by day. It will always have happened on the Saturday after Em’s birthday, in the morning, just hours after I got home from a conference. Those are the signifiers burnt into my mind. The precise date almost doesn’t matter. Easter Sunday. Cancer Saturday.

Or did it start on that holiday to Brittany, those days in a French hospital? Or when he had chickenpox at three months old? Or when he was in the womb? Or at some other point? We will never, and can never, know. But today (or tomorrow) is the day when we met Simon the paediatric oncologist for the first time, and he said “it might be Langerhan’s Cell Histiocytosis”, and this whole fucking elongated, awful, frightening, boring, anxious nightmare began properly.

I could have requested his hospital notes for this post, totted up all the blood transfusions and X-rays and nights in hospital, reduced everything to brutal statistics (30+ transfusions of various blood products; 50+ nights in hospital; 12 weeks of chemotherapy), but as numbing and horrific as those numbers are, they don’t tell the full story. Nothing can.

Three weeks ago we managed out first family holiday abroad since this that trip to France. A week in Portugal, in a villa belonging to Em’s aunt and uncle. Our neighbour, who is Portuguese and a medical researcher, kindly translated the hospital’s letter for us, in case the worst happened. It didn’t. The worst thing about the holiday was managing two small children in a hot and unfamiliar environment. It was pleasantly uneventful.

Life is mostly uneventful now, if not always pleasantly so, and while somehow managing to still be busy. We camped last weekend – one night in Woolacombe – a dry-run for when we go to Green Man Festival next month. It was also pleasantly uneventful. We argued, of course, stressed, said we should just sack it off and go home before the tent was even up, because, even though life is “normal” now compared to the whirlwind of diagnosis and chemo and surgical procedures to install valves and tubes that can pump drugs into and extract blood directly from my baby’s tiny heart, life is not ‘normal’, and never will be again. “It’ll never happen to us” was a default setting. The worst thing imaginable happened. Why the fuck wouldn’t it happen again? We know now that it can. Every blemish, every cough, every dip in appetite, every odd step; is the cancer back? Has the gene inhibitor stopped working?

It’s a long time since I’ve had that weird, vertiginous sensation that this is all a shitty, horrible film about cancer that I’m stuck watching, or a dream, or someone else’s life that I’ve somehow been zapped into like Sam in Quantum Leap, and had that desperate, irrational hope that someone ineffable, somewhere, will snap their fingers and this will all be over. I had that feeling a lot in the early days, in those first few weeks. Every so often – only every few months, probably – it comes back, that sense of the world tilting and coming up to meet you as you realise and acknowledge, again, that your baby has cancer.

“He’s NOT a baby daddy; he’s a toddler now.”

There was a guy, with a homemade banner about god, preaching on the High Street today, telling us that only god can save us from hell and damnation, and I wanted to slap him, grab him by the shirt, and scream in his face that I’ve been there, that it’s here now, that eternal damnation is just that – eternal, low level, ambient somehow, a permanent disquiet that soaks into your bones, like lenses of glasses scratched so much that you barely notice, most of the time, that the world is scarred and blurred and unclear in ways it never used to be. And then you do notice, and you remember that it’s like this forever, and you can never escape. I wanted to ask him how he could justify his god having afflicted my absolutely innocent baby with cancer when he’d barely had chance to be alive. I wanted to name all the other kids with cancer who we’d met, name them and their cancers, the neuroblastomas and the lymphomas and all the others, and ask him how he squares this with his faith. But I just walked past, because what good would it do? I don’t believe in god. Christian values I’m good with. Love thy neighbour, etc. Do unto others. The meek will inherit the earth. I just don’t see our political leaders acting them out much. I do believe that we invented ‘god’ as a concept as a way of explaining love.

Casper is, as ever, oblivious to this, except when we give him his meds. We started a new delivery method this week; still via syringe into his mouth, but dissolved tablets rather than powder. It doesn’t taste as good; he used to actively like the last lot; now he fights you. The fear that he’ll spit it out, not get the full dose, and that the cancer will come back is there at every administration.

Casper is also, it must be said, an idiot. He plays the fool almost constantly, doing things to get a laugh from his sister or from us; plate on head, funny faces, waving his arms and making weird noises, then laughing, laughing, laughing. There is a glint in his eyes – Em has said this almost since he was born – that means mischief, which Nora never had. As if he’s not put us through enough already. And good grief does he love to touch bikes and cars, especially wheels and pedals. We went in the bike shop today to pick up my bike after getting it fixed, and his eyes went like dinner plates.

How oblivious is he really? He’s been unsettled tonight; I’ve had to settle him three or four times between 7:30pm and 10pm. Has he picked up on us being slightly unsettled? What will he remember of this in five years time? How will he explain his scars to girlfriends or boyfriends when he’s older? Will there be emotional wounds we can’t see now?

In a few weeks he’ll start nursery, at the same time as Nora starts school and Em goes back to work. His nursery is on campus – the same one Nora went to, except he’ll be the first cohort in their new building. The staff all know him and his story already. I take him into work to show him off so often; look how alive he is! Look how he can walk, and babble, and smile! When your baby has cancer you kind of convince yourself that he’ll never do the normal developmental things; he’ll never walk, he’ll never drink from a cup, he’ll never manage solid food, he’ll never… be more than a baby. Be a toddler, or a little boy, or a child. Your brain freezes time in the present, because the future could be unimaginably bad, so you can’t imagine it at all.

The last 12 months have been horrific. I am, at heart, a positive person; energetic, talkative, about solutions and newness and change – not glass half empty or even glass half full, but rather “let’s go to the tap together and fill the glass and talk about making sure it’s always full in the future!” – but I’ve been as close to suicide this year as I can imagine I ever will be. Not just suicide; in the darkest moments I’ve wanted to end it not just for me but for all four of us, because my family is the most important thing in my life, and the thought of it splintering, collapsing, decaying and disintegrating is my biggest fear, my strongest trigger, the one thing I cannot cope with.

But I got through that, and now, mostly, things are OK, and I am OK, and we are OK. To look at us in the street you’d never know, most of the time. Em has entered the London Marathon for CLIC Sargent next year. We’re making progress on getting the house how we want it. I’m beginning to care about work again, sometimes. We’ve had, so far, mostly, a nice family summer – Portugal and camping and bike rides and eating in the garden. But it’s all tainted, all stained, all a little spoilt, like when you buy something new and you scratch it almost straight away and even if you can polish the scratch away you know it happened, that it’s there underneath, and no matter how many people tell you “but you know it’s yours now” it doesn’t matter because you just wanted to have whateveritis perfect, unscratched, for just a little while.

We watched Arrival at some point over Christmas, despite several people having told us explicitly not to. If you haven’t seen it, the plot is… relevant to out recent experiences. At the end I cried – great big gobby tears that shake your whole being, like a damn is breaking and concrete is being pulverised by the pressure of the built-up water behind it. It was one of the most cathartic things I’ve ever experienced. I am OK, now, mostly. But I think I want to watch Arrival again soon, just to purge. Break that damn again. Feel the ground rise up. We are in this for a long time. My son has cancer.

My son has cancer.

My son! He has cancer.

My son.

My daughter.

My wife.

Me.

Our family has cancer. It’s in our son. It’s turned off right now, but it hasn’t left properly yet.

Our family has had cancer for a year.

No news is good news

Never quite knew which way to take that phrase. There’s no such thing as good news? Or, if there is no news, it must be good? The difference is significant.

There is no news about Casper. He remains well, and strong, and increasingly noisy. The dabrafenib does what it does. You still worry, constantly, and post traumatic stress disorder lurks around every corner – it’s approaching a year since diagnosis, and tomorrow morning we go abroad on holiday: last time we did that he spent three days and nights in a French hospital and was diagnosed with cancer a week after we got back. Every temperature, every blemish, every abnormal poo sets off alarm bells.

I promised that I’d keep posting here about treatment still going well as often as possible, just in case anyone in the place we were in 11 months ago finds this blog and needs good news and a longer-term perspective. Even when there’s nothing to say. Let’s take the latter interpretation. No news is good news.

Someone’s just reached out to Em on social media about their baby just starting chemo for Langerhan’s, so this post is for them. We’re a year in, and things are OK. We know what you’re going through. You’re not on your own, and you will get through it. Ask for help when you need or want it. Only work with the facts as given to you by your medical team (no dr google). Take each day as it comes and do whatever is necessary. The worst bit is probably when the whirlwind ends and the dust settles, and the emotional scars and fallout begin to manifest. You can do this.

“Basically a normal baby right now”

That’s a phrase I use a lot when people ask about Casper. I just don’t know how long it will last.

I cycled 28 miles with him in the trailer at the weekend, accompanied by my friend Jon. We stopped and had a little picnic halfway through. It was the first trip of more than 5 miles Casper had done in the trailer, and probably only his third or fourth overall. He made happy little noises from behind me for some of it, and slept for much of the rest.

Casper is still well. Still on dabrafenib twice a day. The drug company are apparently not accepting anymore compassionate cases (how Casper is receiving treatment) as they’re about to take it to market. It seems likely it will get approved by NICE and then be available via the NHS. I have no idea how long that process will take. The drug company should keep supplying it to Casper on a compassionate basis until that process is complete, and may even keep on supplying it to him afterwards. I don’t know. The delivery method is due to change though – from a powder that we make into a solution into a semi-soluble tablet, which isn’t meant to taste as nice. Not looking forward to that, but I’m sure we’ll find a way to cope.

What’s in the future? Hopefully keep him on dabrafenib for as long as possible. The best case scenario is that he stays on it until late childhood, when the disease could have burnt itself out. But there’s no certainty, either clinically or in the supply chain. There are apparently 16 children in the country on this medication for this condition, and none have been on it for very long.

Hospital visits are less frequent, but far from rare – he’s in today for blood tests, ophthalmology test, and an x-ray. Next Thursday Helen, his lead consultant, is down from Bristol for her clinic, and wants to see him. Sadly I have meetings all day so can’t justify skipping work; it’s always nice to see Helen because she’s generally so positive, and we need a dose of that every so often.

But generally we’re OK. Casper’s OK. Nora’s 4 and 1/2 and ready for school, so sometime’s hard work, but basically OK. Life goes on.

Life with aphantasia (not being able to see things in your mind)

“Picture yourself in a boat on a river / with tangerine trees and marmalade skies.” Nope. Not a thing.

Remember all those times at school when you were asked to close your eyes and imagine yourself on a beach, or in space, or whatever? To picture the blood running through your veins? I was a drama club kid, so I had more than my fair share of this. But I never saw anything when I closed my eyes. I assumed no one else did, either, not really. “Imagining” for me was a purely… imaginative… process. Intellectual. Conceptual. Not visual. Not in the slightest. Because I have aphantasia – an inability to see things in my head. A lack of a “mind’s eye”. No visual memory or imagination.

Except I’m not sure “have aphantasia” is the right way of putting it. I am aphantasic, perhaps.

So I got myself on the local news website the other day because of my slightly unusual brane (I’m the human interest hook to an exhibition which is the news hook to an academic conference; this is how media works, kids), and the reaction has been interesting; people either seem to have gone “my brane works the same way, I didn’t realise it was weird” or else “omg I can see things in my mind and you can’t this has Blown My Mind how do you even survive?”, which is an interesting dichotomy that leads me to believe that it’s not that uncommon to lack a mind’s eye. In fact, I suspect a mind’s eye is, like most things, a continuum, or spectrum, with people positioned all the way along it, from seeing nothing at all to having photorealistic imagination and recall.

I distinctly remember a conversation when Nora was small old between me and Em, where Em said she couldn’t picture Nora’s face when she closed her eyes, and that this made her feel bad as a parent somehow. My immediate reaction was that I didn’t actually see pictures in my head, and I wasn’t sure anyone really did in that way, and we both know what Nora looks like, so what’s the problem?

Around about the same time, a press release came out of the office next to mine at work about aphantasia, which I read with interest, but didn’t go doolally over. It wasn’t until several months later that a guy who used to work for Mozilla and Facebook wrote a blog post which went a bit viral.

I read that and went… not quite doolally, but certainly ‘oooh’. My sense of identification increased as I read, as I recognised points about my daily thoughts being a constant monologue rather than a stream of images, about not hearing music in my head beyond the “dum-de-dum-de-dum” of my brain silently humming (rather than recreating an entire arrangement), about how my memory is shocking (good recall on facts, awful recall on who spoke to me when – I’m forever telling things back to Emma that she told me first – or on other details of events in my life), about how I have certain pre-loaded descriptions and anecdotes queued up in my mind that I can reel off when necessary, about being unable to write fiction despite being told by numerous people that they expected me to do so, about the books that clicked with me and the kinds of books that didn’t. Salman Rushdie’s indulgently descriptive prose lost me completely, for instance, but anything where ideas and linear plot are placed ahead of literary evocation tends to stick – even so, I rarely read fiction as an adult, and always, always struggle to follow descriptions. If I do read a book I’m never disappointed with the film afterwards,

I don’t completely identify – I can (or could) draw, I do dream (but it’s nothing like watching a film), and I feel like I do have some, albeit miniscule, degree of visualisation (like catching something in your peripheral vision and turning quickly to look properly but it’s gone), but I definitely felt like I understood his experience far more than the opposite. I catch myself saying “I can see them but I can’t think of their name” quite often, for instance, but I’m not ‘seeing’ a face in my head, I’m just… knowing that I know who they are, and would recognise them if I saw them.

I think of myself as a very visual person – I’m a decent (amateur) photographer, I commission and instruct professional photographers, I write design briefs and approve design schemes in my day job, I sign-off artwork, I used to draw and paint all the time when I was a kid. (I wonder if I could visualise and if it’s slowly evaporated as a skill as I’ve got older? I don’t think it has; I think I never could.)

So I took the test on the BBC site, and came in the bottom 5% of the population for being able to visualise things. I’m not completely brain-blind like Blake is, but any ‘images’ I do get are very, very indistinct, and so fleeting that I can’t concentrate on them at all. Off the back of that I volunteered to be part of Professor Adam Zemen’s further study, which meant filling in various questionnaires and having an FMRI scan on my brain while being asked to picture famous people in my head after being shown pictures of them, the aim being to see if the same areas of my brain lit up while imagining them as when I could actually see them. Because it was an academic study I didn’t get given my individual results, but I might ask for them, as I’d quite like to see scientific proof of the lack of activity in my brain…

This revelation has explained to me a number of behaviours and instincts. I’ve stopped tagging anything or pursuing followers on Instagram, for instance, and have reconciled with myself the fact that I look at my own photos considerably more than I look at other people’s. Because social media is my repository in the absence of my brain doing the job. It’s not *just* that I’m a narcissist.

Some thoughts, in a list…

  • “Catching” the memory of a face out of the corner of your eye is a great way of putting it that I saw somewhere. As soon as I try and concentrate on it, it’s gone.
  • I much prefer impressionist, abstract art to figurative; I like swirls of colour. A strong visualiser I used to share an office with was very much the other way around and hated any abstract art. Is there a connection?
  • I always used to assume that people who said they were, for instance, picturing sheep to count to fall asleep, were being weird and kind of lying. Or just saying “one sheep, two sheep, three sheep” etc silently in their head.
  • I don’t tend to get anxious or stressed; I assume partly now because I don’t visualise negative potential outcomes. I don’t really get nostalgic either.
  • I also don’t really get that excited about the future, for presumably the same (inverted) reason.
  • Yes I am creative; I need to move ideas from the abstract into the concrete, or they get lost. I’m learning more and more as I get older how methodical I need to be about this to preserve ideas, though, and methodical is not always my nature.
  • I do not understand ASMR – autosensory meridian response – that thing where people get tickly necks and rushes of warmth from hearing other people whisper into microphones and stroke balloons and slice cheese and stuff, and I wonder if this is related, if aphantasia is connected to how all sorts of sensory inputs are interpreted and relayed by the brain?
  • I’ve never done psychedelic drugs so I have no idea whether LSD would bust my mind’s eye open or not. A friend at uni told me I was psychedelic enough already. But it appears I’m not! Not like that, anyway.
  • I prefer doing to watching or having done – football and cycling being two examples. I have very little interest in watching other people do these things. I also find it difficult to predict what will happen tactically in a football match?
  • Yes I dream; my dreams give a sense of a landscape without any detail.
  • I am very intrigued by how hyperphantasia and photographic / eidetic memory work together; I suspect they’re related.
  • Yes I know what my wife and kids look like – I can describe them on a factual level, and I would never not recognise them – I just don’t ‘see’ them when I close my eyes. Or you, or anything at all.
  • I was very intrigued by my own reflection as a kid, probably more so than usual. I’ve trained myself not to be as an adult (hence very few selfies) so as not to appear to be a narcissist, but I don’t ‘know’ what I look like beyond the brief factual description; brown hair, brown eyes, glasses, beard, 5’8”, etc etc.
  • Don’t ask how I masturbate. I’ve got a pretty good idea of how you do. (Joke stolen from somewhere else but I’m damned if I remember where. QED.)
  • I think in a pretty constant monologue. Certainly no pictures. Just words, all. the. time. Like I’m writing constantly. Or doing a silent internal commentary track on what I’m doing. If I’m not paying attention to you, if I miss something you’re saying, it’s because I’m paying attention to this internal monologue. Or thinking, as other people seem to call it.
  • I wonder if people who were born with sight and become blind through illness or accident can still visualise (if they could before). What about people born blind? How does that work?
  • Those people on Record Breakers when I was a kid who could remember a pack of cards by visualising and turning it into a story? Never understood even remotely how they were doing that.
  • I don’t really do ‘memories’; I can recall facts about my life, but there is no visual component, just information and, sometimes, emotion.
  • I’m pretty level emotionally most of the time.
  • I’ve had deja vu but only about four times in my life.
  • I experience art, music, and film as evocative, especially the more abstract end – Turner, Dylan, and Loach don’t really do it for me.
  • I prefer what I’d call “ambient world building cinema” (good grief that’s a wanky term) where you can revisit, semi-ignore plot, and just kind of hang out in that imaginary world for 90 minutes. Blade Runner 2049, Totoro, Star Wars, Zootropolis, Children of Men.
  • Lyrics are not generally that important to me; or seldom the *most* important thing aout a piece of music.

I am amazed at the staggering level of variation in human brains; you cannot take for granted that other people can see, feel, or even perceive things in the same way as you, because they clearly don’t, and I think actually, now more than ever, research about things like this can help us understand and accept that people are different, and hopefully make us more compassionate as a society and culture.

Casper is still fine

He is crawling, and fast. He has stood unaided for a few seconds, and cruises a lot. He loves food. He shouts a lot. He smiles as much as ever. Trips to Bristol are every two months now. The Exeter paediatric oncology team only check his bloods every month. Life is pleasantly dull, albeit still riddled with an anxiety that you can probably only understand if you’ve dealt with cancer at very, very close quarters. The gene therapy is working, and we hope it will continue to work for at least another couple of years. And then we’ll see what happens. Constantly assessing. Never not worrying. But living, and hitting milestones, and being a family.

Everybody Talk Talk

Have you heard the news? I went to “New Grass” first, when I heard the news. It benefits, I think, greatly from context, from following the slow, stark, creeping loneliness of “Taphead”, which can feel like a purgatory before the new rays of sunlight break through. Even played directly, without that journey to it, without earning that pay off, it still sounds more hopeful, more beautiful, than almost anything else I’ve ever heard. “Versed in Christ should strength desert me.” Not theist, but searching, desperately, for the divinity in humanity.

I was in my very early 20s when I ‘discovered’ Talk Talk for myself. Familiar with the big radio moments but never tempted to look beneath, I remember a growing sense of their influence as I researched music online – at I Love Music, and AllMusic, and anywhere else were I could debate and read and discover – that eventually reached critical mass to inspire a purchase. I remember that sense of having found secret directions to something, not knowing what it would sound like, but hoovering up descriptions and explications before I finally took a copy home. Spirit of Eden was, of course, first. I wish I’d been 14 when The Colour Of Spring came out (instead of 7) and a fan, so I could have travelled with them. They were long gone, though, even Mark’s solo album in the past by the time I got there. I wanted to write a book about their music. Pitched a book, even, to a publisher (along with a hundred other people).

Spirit of Eden is, of course, the one that gets the attention, the one that I wanted to write a book about (well, I wanted to write a book about all their music, and use that record as the hook to do so), the one that I wrote an article about (that I was baffled and pleased to see being shared online even today, a lifetime later), but it’s the one I turn to least this last decade or so; The Colour of Spring is just as impressive – maybe more so for being a pop album, with pop songs, that you can sing along to – and so much easier to actually listen to; the darkened room and unwavering attention being increasingly difficult to achieve as you add things to the mix of your life. Mark himself didn’t seem to have much room for (making) music these last 20+ years of family life. And that’s OK.

And then there’s Laughing Stock. In the darkest, loneliest moments of my life, when all other music has felt trivial, inconsequential, I’ve turned to Laughing Stock. It’s been the only thing that felt like it had any profundity left. I’m not really a believer in profundity, as a rule. But sometimes you need it.

They were still, in their way, a pop band, even at the end; “After The Flood” has a chorus, of a sort. They didn’t eschew songwriting structures the way so many people suggest, but rather stretched them out and removed elements until it was difficult to see the pattern in the music for the space around it.

With grim inevitability I am expecting Mark Hollis’ cause of death – if we are ever told anything beyond it being a ‘short illness’ – to be cancer. Because everything is cancer right now.

Everyone talks about the gestalt, but it’s always moments that come to mind. The strings in the coda of “Myrrhman”, so slow, so simple, the most mournful sound I might have ever heard. The slow-motion drum roll at the end of “John Cope”, a b-side (to “I Believe In You”) lost to obscurity but every bit as affecting – maybe more so for its lack of attention – as Spirit of Eden itself.

The squalling, unkempt guitars in “Pictures of Bernadette”, another b-side (“Give It Up”). The plaintive, powerful cry of the titular line in “Why Is It So Hard?”, a song as good as anything from their first three albums but which barely anyone has heard. The choir – of course – in “I Believe In You”, and that mellifluous rhythm beneath it. So many others. So many.

Rest in peace, Mark Hollis. “Lifted up / reflected in returning love you sing” indeed.