Been quite a while since I wrote anything here. This is why.
My last public performance was at a Discordian-related event in London, Journey To Nutopia, on 23 Feb 2020ce. The subject was ‘Magic Is Real’.
In my talk, called ‘Tales From The Interface’ (which you can read below), I explored ideas around authenticity and the use of fiction in magic, referring to certain related work of the comics author Warren Ellis. The last part of the talk was a slide which read:
KNOW YOUR PATCH
Three days after returning home from the gig, I fell ill. Like flu, but with more sweating and shaking. And it just would not go away.
(Four months after that, as I also note below, Ellis was outed as a serial sexual predator, having used his fame and influence to manipulate literally hundreds of young women in his profession for years. I could say much more about this, but I note it here because taking great care in who you listen to and why is a factor in how we got into this mess.)
Although I didn’t lose my sense of smell, a couple of weeks in I decided my other symptoms were close enough to this weird new disease known as SARS-COVID-19 to justify spending a delightful day playing NHS phone-chess, being passed from 111 to the COVID hotline to my surgery and back, only to be told that a diabetic with a chronic inflammatory disorder in his fifties wasn’t considered high risk enough to test for the disease because I hadn’t knowingly had contact with anyone who’d been out of the country recently.
Though I was getting sicker, I wasn’t in major respiratory distress. Rather than burden the NHS further, I stayed home. I’d handled twenty years of diabetes and arthritis: I’d had my throat cut by professionals and titanium bolted into my neck bones. I figured that I could tough this out for maybe three or four more months before completely losing my shit.
It has now been one thousand days since my illness began.
Just run that number around your head for a moment.
A thousand days. Twenty-four thousand hours.
One comparison would be that it was the length of the presidency of John F. Kennedy. Another would be, three-fifths the length of World War I and half the length of World War II.
In that time, I have become far more sick and disabled than I already was. I’ve lost most of my energy and resilience, in a manner extremely reminiscent of ME/CFS (my wife having suffered from this for 30 years, its effects are all too familiar).
I now only have the ability to leave the house for necessary medical or household reasons (always masked), and when I do, I usually fall prey to PEM – post-exertion malaise, where my chronic fatigue symptoms worsen and my body simply refuses to do anything but the basics for days after.
(I once had to spend 3 days doing nothing but shake after taking out a heavy bin bag.)
If I forget to put my N95 mask on when I answer the door for the post, I catch colds and flu at the drop of a hat.
I spent most of this time literally trembling at the cellular level, trying to sleep while drenched in sweat every night and soaking for half the day. As the condition worsened, I developed spasms in my arms, hands and sometimes my face. And my brain just… stopped working as well as it used to. We call it ‘brain fog’ but that doesn’t begin to cover how scary losing your cognition, your mind, actually is.
(I also have bouts of hiccups every single day, several times a day. Hiccups are hilarious, right? One of those basically funny bodily functions, like farting. Trust me, they stop being at all funny after the first few months.)
The process of traveling through various parts of the NHS with this ailment, while it was simultaneously being bombarded with Covid cases and strangled by Tory budget cuts has been… educational. In the second year, I was finally put onto what is delightfully termed the Vague Symptoms Path (also known as, somewhat ironically considering how long it took to reach it, the Rapid Diagnostic Services). This is a process of wide-scale tests to try and work out the cause of illnesses which are non-trivial to diagnose. It’s mostly a process of elimination.
At this point, they’re pretty sure I don’t have one of the major forms of cancer, Multiple Sclerosis, Lyme Disease, a variety of heart, liver and kidney diseases, brucellosis or thyroid nodules.
And, it’s not lupus.
After another year of waiting, I’m getting to see a neurologist really soon now…
In the last few months, a kindly GP decided that, if I couldn’t be diagnosed then they could at least try and treat the symptoms.
I was given some drugs to control the shaking and spasms – a combination of beta blockers (which have to be taken every six hours) and a muscle relaxant usually reserved for MS patients. For a month or two, I felt immensely better. The shaking and sweats pretty much stopped and the brain fog finally cleared. But they are becoming less effective. I once again have returned to trembling most of the time and the chronic fatigue symptoms never left me. Thankfully, most of my mind is still here.
Although I have never received an official diagnosis, the symptoms are a close fit what is now called Long Covid. Current estimates (which I suspect are on the low side) suggest over 1.2 million people suffer from Long Covid in the UK alone. It appears to cause damage to the entire circulatory system, possibly because of microscopic blood clots which the immune system cannot break down; the brain and heart are the two organs most severely affected. And, because of my not getting that early testing to confirm I’ve actually had Covid, they won’t admit me to the Long Covid clinic.
I have oddly fond memories of lockdown, especially compared to what followed. Weirdly, being chronically ill already, our lifestyle didn’t change very much, and my wife and I are always very content in each others’ company.
There was a sense of “we’re all in this together”. So many folk were revealed to be kind, generous and thoughtful of others in those days (like when my street, already fiercely resilient after three floods in eight years, set up doorstep disco parties every Saturday afternoon and they made me cry in the best way by playing ‘What’s Up’ by 4 Non Blondes – Sense8 fans will get why).
Meanwhile, most of the rest of the world – and the majority of the British Discordian tribe who had previously declared me as their shaman – grumbled their way through the entire lockdown. A notable event was certain members breaking lockdown to drive across national borders to enact a magical working which required no specific geographical location in which to be performed.
And, as soon as the least trustworthy and most blatantly corrupt government in British history told them they could, most of the country, and all too many of my friends, simply stopped wearing masks, went back out into the world and acted like it was all over.
As I watched all this, isolated in my house, with increasing horror, one phrase kept coming into mind…
The Kobayashi Maru test first appears in Star Trek II: The Wrath Of Khan (1982). It’s a key event in Starfleet training: an exercise where a cadet crew have to try to save the ship of that name and its’ crew, which is stranded in enemy territory.
It is deliberately a no win scenario. You cannot rescue them at all, and you’ll almost certainly kill your crew trying.
The Kobayashi Mari is a test of character – an examination of how future Starfleet officers deal with something they cannot beat, can only try to ameliorate. How many people they try to save, how hard they try to do so and how they cope with failing.
(Famously, the only person to beat the test is James T. Kirk… who cheated. He got a commendation for that, but he later regretted never having actually faced that awful choice fully.)
COVID-19 was a Kobayashi Maru test for the entire world. A test of character in the face of unstoppable harm. And most of you failed it, badly.
In the thousand days that I’ve been stuck here, getting sicker and sicker, losing my ability to function in a world that increasingly excludes me and mine, I have watched people who swore they would strive for a better, more inclusive and kinder world completely abandon people like me. Running off to and organising every no-mask-mandate super-spreader event they could as soon as possible, partying in the middle of a plague. Almost completely abandoning all the creative ways and possibilities we found during lockdown to make the world a better, safer, more inclusive place for disabled and immunocompromised people.
I understand how hard it was, trust me on that. It must have been marvelous to feel free again, hug your friends, return to something like a normal life. But a fuckload of us couldn’t, and can’t, and may never be able to do so again.
For obvious reasons, I did not attend the funeral of beloved 23 tribe member Claudia Bolton. I also couldn’t bear to watch the live video of it… because from what I could see, not a single fucking one of those attending wore a mask to it. There were at least fifteen Covid cases afterward as a result. I don’t know how many of those converted to Long Covid, but I have sympathy for those for whom it did. But not much pity.
Before the brain fog symptoms caught me up, I did manage to do some writing. I was proud to have a piece in Paul Watson’s Rituals And Declarations volumes of folklore and resistance, called ‘Plastic Altars, Titanium Bones’, which talked about my cyborg transformation and the altar I created to keep me going through both that part of my Chapel Perilous and my Long Whatever, ‘The Shrine of the Useless Eaters’.
(‘Useless Eaters’ – ‘Unnütze Esser’ in German – was the Nazi term for the disabled people they rounded up, put in concentration camps and slaughtered. I intend to reclaim this term in much the same way we queers have reclaimed that one.)
Among the figures on the Shrine is Adam Jensen, protagonist of the Deus Ex prequel games, whose often-memed phrase was one I said to myself a lot during these thousand days…
“I never asked for this”.
The other thing I wrote was one of a collection of new essays for the Hilaritas edition of Robert Anton Wilson’s Sex Drugs and The Occult – A Journey Beyond Limits. It’s called ‘Spiral Architect’, and it was an honour to be among the creators who contributed, including Grant Morrison. (I even recorded a video of me reading it for a related Nutopia event.)
But after that, I was pretty much a zombie for over a year.
Last year, my wife, the artist Kirsty Hall, was diagnosed with a rare form of cancer. Anal cancer, of all things – and believe me, we did all the black humour arse jokes possible. But the humour got pretty thin when I had to listen to my beloved scream in agony every time she took a shit, for a year.
When I told the 23 community this, I received a lot of well-wishing and kind messages… and then a bunch of them immediately posted anti-vaxx and anti-mask propaganda.
One of them, when I gently suggested gaining an understanding of such crip/chronically ill terms as ‘spoon theory’, just called me a cunt and told me to fuck off. Another told me, when I refused to continue an argument about a mutual acquaintance because I didn’t have the spoons (physical and mental energy) to do so, accused me of “hiding behind my disability”.
Failing the Kobayashi Maru while laughing your arses off.
Kirsty, thanks to the excellent work of St. James’ Hospital in Leeds, is now in full remission, but that year of fear and agony took its toll on both of us.
Kirsty underwent 6 weeks of radio/chemotherapy at St. Jimmy’s (the staff were fantastic… but we were aghast at how many visitors to this specialist cancer hospital did not wear masks). We spent weekdays there, staying in the hospital’s hotel wing for patients and carers – the closest thing to a holiday we have had in a long time – and coming home at weekends.
I was too ill to stay with Kirsty at the hospital for the last week, so I had to come home.
The second day I was home alone, 2 years to the day after I fell ill after that Nutopia event, our beloved cat Chiana dropped dead.
I found her cold, stiff corpse at the top of the stairs… then had to phone Kirsty at the cancer hospital to tell her, and then make arrangements for Chiana’s remains… all while being barely able to stand and walk.
So, here I am, nearing three years of this. My body spends most of its time acting as though I’m terrified – over-reaction of the sympathetic nervous system is my main symptom. And honestly, I am scared. Horrified, constantly, on top of this neurochemical tempest. And so very, very angry.
I have watched the world pretend this never happened, some saying it was a conspiracy caused by 5G and transexuals.Treating it as a mere blip in the steady march of late capitalism – as our new Prime Minister said, “Eat out to help out”. Behaving like the disease isn’t still out there, killing and maiming people daily.
I witnessed a community that pledged itself to the cause of making the world a better place, of pulling the Cosmic Trigger and sharing love and strength and harmony, mostly just rolling over and abandoning its most vulnerable people, conforming with the worst instincts of increasingly fascist capitalism and acting like everything will be Just Fine. Ignoring, or even agreeing with, the blatant culling of us Useless Eaters. Acting as though my life, Kirsty’s life and the countless others still at risk just don’t matter as much as their fun. Holding biting parties during a zombie apocalypse.
Some of them, though, have been marvelous throughout this. I am especially grateful to Chris Manley, who spent a lot of time driving us to and from the cancer hospital, picking up meds for us – he truly went above and beyond for us both. Tom Baker and Dan Sumption and their players have helped keep me somewhat sane with their online tabletop role play game sessions – pretty much the only social activity I have left. (I tried to run a game of my own – an occult riff on Mick Herron’s Slow Horses books, now a fine TV show – but after a few sessions, I found that I lacked the spoons to continue… my thanks to the patient players there.)
My new Hebden neighbour James Burt has been a great friend throughout, and respectful of our needs regarding possible further contagion. Some of the tribe have continued to maintain masking and other safety measures at their events, and to make those events available online where possible – Andrew O’Neill (whose BBC radio show Damned Andrew is superb) puts many of their comedy shows on Zoom and has done several Zoom-only shows.
I am also immensely grateful that, after mourning Chiana for six months, we adopted a new cat from a local rescue centre. Her name is Luna Ferocity Shadow: she was rescued from a home where the other cats bullied her. A Child of the Secret, just like me and Kirsty. And we adore her.
But honestly? Most of the people who called me friend, comrade or their shaman now fill me with nothing but a terrible sense of disappointment, abandonment and betrayal.
Some years ago, when I could still go to large scale events, I was involved in the accidental creation of a new religion: Wonderism. It drew from the Cosmic Trigger play and surrounding events, primarily inspired by a talk by John Higgs and the resulting poem by Salena Godden which gave Wonderism its rallying cry…
“Pessimism is for lightweights”.
(My part was the closing ceremony on the last night of the play, a magic ritual with a couple of hundred participants including Alan Moore, Adam Curtis and Jimmy Cauty. In that ritual, I talked about how the root of the word ‘conspiracy’ means ‘to breathe together’.
The bitter irony of that in times where I cannot risk breathing together with others without a N95 grade mask is not lost on me.)
I have so little optimism left in me now. Maybe that means I have finally become a lightweight… or perhaps, optimism is a function of one’s carrying capacity. Mine has been somewhat reduced as of late.
(And, frankly, my idea of a lightweight these days are the people who bitched so loudly about the mental stress of having to endure six months of lockdown, from the perspective of someone who has been housebound except for necessary medical excursions for five times as long.)
What little energy and magic I have left in my undoubtedly shortened lifespan will be spent on two linked causes: anti-fascism and disability activism. I shall be working with people who have shown actual solidarity through these times and communities who have proven they can actually be trusted, such as the Hookland and Folklore Against Fascism groups, and the growing community of cyborgs inspired by the work of people like The Cyborg Jillian Weise and performance artist Viktoria Modesta.
In those thousand days, we have lost so many people. Millions of unnecessary deaths; from Covid, from the war in Ukraine, from the murders of queer and trans people as a result of the fascist propaganda against them. Some of those losses hit me very hard indeed. As I started writing this, I heard that the great SF writer Greg Bear had died. The day after that, a fascist with an AR-15 assault rifle murdered 5 queer and trans people and maimed a dozen more at a drag event in the gay venue Club Q in Colorado Springs, the day before the Transgender Day Of Rememberance.
A week before that, we lost the comics artist Kevin O’Neill and (especially tragic for me, as his voice had carried me through some of the darkest points of my life) Kevin Conroy, the gay man who was the true voice of the Batman.
The loss which hurt me the most was Andrew Vachss, who died about a year ago. Andrew – who I knew slightly online and considered a personal hero for decades – was a lawyer and novelist who devoted his life and career to the protection of abused children and helping to understand and ameliorate the impact such abuse has upon society. He coined terms like ‘circle of trust’ to describe the places where these predators hunt, and ‘Children of the Secret’ for those of us who have suffered their attentions.
(He also sent Warren Ellis – an admirer of his work – a scathing tweet when Ellis was outed as a predator.)
With the destruction of Twitter under the command of its new owner and fash sympathiser Elon Musk, who has sided with people openly posting about disposing of the Useless Eaters (using that very term), another vital part of the disabled community’s fragile network is being destroyed. Meanwhile, the predators and their enablers – the likes of Jordan Peterson and even fucking Donald Trump – are being reinstated and given free rein.
Andrew Vachss wrote a Batman novel once, called The Ultimate Evil. It contains a haiku I think about often in these days of open fascist violence and manipulation, which Bruce Wayne’s mother Martha wrote for him when she learned that she had been targeted for assassination by a network of powerful pedophiles (because she too was a crime fighter with a secret identity… that of a rich socialite wife and mother). It was left in the care of Alfred to give to her son should he ever follow in her footsteps, on the day he became the embodiment of vengeance against them.
“Warrior, heed this
When you battle with demons
Aim not at their hearts”
The other line of Andrew’s I think about nearly every day is this…
“Behaviour is truth. You are what you DO.”
I have watched what most of you have done.
If for no other reason than for enlightened self-interest, the logical next step from the selfishness I have seen on constant display from so damn many during these thousand days.
Wear masks. N95 grade. Insist on it at your events. Stream your events: those of us who can’t go would happily pay to watch them.
Think about access to your events if you insist on holding them. By which I mean; think about who they are inaccessible to and what to do about it. Don’t just mull it over amongst yourselves – talk with disabled people about this. As the saying goes:
‘Nothing about us without us.’
Get vaccinated unless you have an actual medical reason not to, and keep getting boosters. Stay informed: I understand it’s difficult to sort the actual truth about this disease and its continued presence from the conspiracy bullshit, but you have to try.
(A good start would be science journalist Ed Yong, who won a Pulitzer for his Covid coverage.)
Stop supporting people who say it’s all over or that it doesn’t matter because it only affects the old and already sick. That’s literally the fascist extermination agenda, the Useless Eater Cull. Shun their fuckwit mouthpieces like Jordan Peterson and the never-ending parade of transphobes from JK Rowling to Joe Rogan, even (maybe especially) if you share them ‘ironically’.
And, to be clear: Disabled rights, trans rights, queer rights, non-binary rights… are human rights.
There’s a saying in the crip/chronic community: “disability is the one ‘minority’ anyone can join at any time”.
Or, as I put it; unless you’re lucky enough to die very suddenly, you will become disabled as you age, if not before.
Those of us with Long Covid and other immunocompromising illnesses, the crips and the chronics, are the crew of the Kobayashi Maru; stranded alone in enemy territory.
The difference is that, instead of having to risk your lives in trying to help us, you are protecting us all. If you don’t, you will end up stranded here with us.
Love matters. Punch Nazis.