29. My malingering years

Lana, Red Shoes and witchery: the sad girl triple threat

Happy Christmas! There’s a bonus length essay this week to see you through to new year — skip to the end for Lana, The Red Shoes and witchcraft, plus a chunky link selection. First, a public service announcement. We’re close to the line but there’s still time for you to buy a great present for the noughties traumatised woman/pop-culture curious Gen Z/millennial man with great taste in your life: how about a copy of TOXIC: WOMEN, FAME AND THE NOUGHTIES, the book that been called “brilliant”, “necessary” and “a Molotov cocktail hurled at the feet of celebrity culture”? Yes, I wrote it. Hit the button below to go straight to Amazon and solve your gifting woes.

This will be the last Tox Report of 2023, so it’s a shame that I’m writing something that will probably rub some people up the wrong way. To ameliorate that, I will start by telling you a story about myself. I did not like going to school. I was good at school, in the sense that I was academically bright and usually concerned to make my teachers think well of me. But I found being at school hateful — and it’s only having gone to my children’s schools as a parent that I’ve realised how repulsed I am by the teeming corridors, the smell of disinfectant and the nasty plastic chairs with gum stuck under them. The scratchy sense of boredom infused in the classroom walls, and the barely contained disorder that comes from kettling a few hundred adolescents together. School was a place that I very strongly did not want to be.

Yet until I was 14, it never occurred to me that not going was an option. School was inevitable. Until it wasn’t: I caught glandular fever, spent a few weeks being spectacularly ill in bed, and by the time I was well enough to go back, the spell of school was broken. All along I’d thought school was compulsory: it had never occurred to me that the system relied on my compliance. Now, I chose to withhold that. I chose to stay in bed. And to my astonishment, it worked. The only person making me go to school had been me.

I didn’t leave education completely. At some point I picked up the idea that I needed to maintain two thirds attendance to avoid triggering a social services intervention, and so for the rest of my GCSEs and the whole of my A levels I would go in three or four days a week. I found those days even more unpleasant than school had been in the first place, and they meant giving up pleasures of reading novels and eating non-school lunches at home, but I did have some compensation: I had the glamour of the sickroom. Being substantially absent from school had made me feel interesting.

Someone — I don’t remember who, possibly a teacher — volunteered the diagnosis “post-viral syndrome”. I cleaved to it gladly. And truly, I did not feel exactly “well”. I got tired easily (of course I did, I’d spent two weeks lying down). Physical activity made me achy (so I avoided physical activity). I got headaches, and I felt sad. I slept badly (but then, three or four days a week I had no reason to get up, so I wouldn’t go to bed). Looking at that list of symptoms now, it’s very obvious that I had mild depression and what I needed was routine and exercise. But I didn’t want to have depression, and I certainly didn’t want to have the kind of depression that could be cured by the boring expedient of doing normal things, because getting better would have meant going back to hated school.¹

It would also have meant letting go of the idea of myself as “sick”, and very soon after getting glandular fever, sickness had become the most important fact I knew about myself. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” wrote Susan Sontag. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Based on my own experience, I think Sontag is wrong — at least for some people, at least for some of the time. I preferred my bad passport. I couldn’t even imagine myself as a citizen of the kingdom of the well. I was going to have to be forcibly removed from that other place.

Sontag is wrong. I preferred my bad passport

When you talk about this kind of liminal unwellness, it’s often perceived to be a discussion about whether an illness like my “post-viral syndrome” is “real”. I think that’s the wrong question. I didn’t have any symptoms that would have shown up in a medical test (excepting a mood questionnaire), but nor was I faking: the tiredness, the headaches, the aching were all real. A better question might be something like: did the label I was given (the label I chose) help me to get better? Here, the truth is that it did not. It gave me, if anything, a map for staying sick.

This is where some readers will start to peel away from me. There are other labels that could have been applied to my malady. It would fit the criteria for (among other things) chronic fatigue syndrome or chronic Lyme (which is different to and more controversial than the tick-borne Lyme disease — there are some who have self-diagnosed chronic Lyme without ever having contracted Lyme disease in the first place). Or, 25 years later, it might have been recognised as long covid. Do these labels describe a real experience for the patient? Absolutely. Do those experiences have any clear physiological basis or progression? They do not: they are syndromes, collections of generalised symptoms that cluster under a name.

One argument is that this is a consequence of medical sexism: all these diagnoses are more likely to apply to women than men, and perhaps the lack of understanding is a consequence of medical neglect of the female body. Or perhaps (and this is what I'm inclined to believe) it runs in the other direction: the neglect consists in applying a dubious label rather than pursuing a cause and a treatment for the patient. These are syndromes that mark the end of medical curiosity, not the beginning of a journey towards health. In fact, medical curiosity can be severely punished: researchers in CFS, for example, experience rates of harassment only really rivaled by vivisectionists and middle-aged feminists. This harassment comes from self-identified CFS sufferers.

That’s one clue that these diagnoses function more as identities than as a form of medical knowledge. Another is the regularity with which you’ll see them appended to people’s social media profiles — #CFS, #lymewarrior, #spoonie (a twee reference to the “spoons theory” of physical depletion in the invisibly disabled), #longhauler. Often these labels will overlap. And clue another is the way these groups are treated in the media as the holders of secret knowledge. Science writer Ed Yong, who has allied himself firmly to the long covid cause, wrote this in a recent article: “Before the pandemic, I mostly interviewed academics with advanced degrees and institutional affiliations. Long Covid taught me to also seek expertise from actual experience, instead of mere credentials.”

Yong no longer sees his job as testing patient testimony against the available evidence. Instead, he sees it as his vocation — not too strong a word — to record and reflect back the experiences of putative long covid sufferers. But while some people plainly do suffer extended and debilitating consequences from covid, it’s not clear that all the symptoms clustered under long covid can be ascribed to the virus: the American Center for Disease Control even says “in some cases, a person with Long COVID may not have tested positive for the virus or known they were infected”. In other words, as with chronic Lyme some people believe they have long covid without ever having definitively had covid in the first place.

And it is easy to recognise yourself in the long covid symptom pool. Tiredness? Brain fog? Sleep problems? These are all things that any individual is likely to experience to some extent, particularly an individual who’s been through the stress of a pandemic and lockdown. The symptom list is long and expanding. The process Yong describes for talking to his interviewees seems robust at first glance, but in fact it is a method for widening the net of diagnosis:

I bring as much curiosity and empathy as I can to interviews. I’m not fishing for quotes or dramatic details of horrible symptoms. I want to know how long-haulers feel, including the nuances and minutiae of their lives. I check my own thoughts on the fly, running my interpretations past my sources in real time to check if my understanding and assumptions are correct. I do this iteratively, asking them if they have had the same or similar experiences of the previous sources I’ve interviewed, to identify points of commonality or contention; everyone is wrong about something, and being empathetic doesn’t mean abandoning rigor. [Italics added.]

This suggests that when Yong speaks to his sources, he doesn’t simply ask about their symptoms and record the answer. Instead, he asks if they have the specific symptoms previous interviewees have mentioned to him. He gives them a script. Yong frames this as him learning from his interviewees, but actually he’s teaching them how to be long-haulers. (There is an obvious precedent to this belief that the patient is the expert on their own condition, and can never be mistaken about the cause of their distress: it comes from gender medicine.)

Chronic Lyme has been called “a disease born of advocacy”. I look at Yong’s work now and I see, not a journalist, but an advocate: someone for whom the highest duty is not the interesting truth entertainingly told, but to “make people who feel invisible feel seen”. It’s a perfect sealed system: the subjects are the audience and the audience is the subjects, and Yong presides heroically over all of it. Yong is vague in this article about he thinks should be done about the “long haulers”, but he doesn’t mention research or treatment. Instead, his talk of a “rush to ‘normal’” and “deepening tragedy” suggests he would support ongoing lockdowns and masking even now we have effective vaccines. It is a desire to live in a permanent state of disease.

Calling for ongoing lockdowns and masking is a desire to live in a permanent state of disease

This seems a particularly destructive thing to call for, given my own experience. How many of the “long haulers”, I wonder, are people like me at 14 — people for whom the regular world seemed a hostile place, and who experienced being invalided out of it as a liberation? How much is the reification of the “long haulers” an error mistaking the harms of the cure (because lockdown, while necessary in the face of a novel and aggressive virus, was also incredibly psychologically bruising for some) for the harms of the virus?

“Dismissal and gaslighting — you’re just depressed, it’s in your head — are among the worst aspects of long Covid,” writes Yong. But psychosomatic illness is still real illness, and depression is hardly a “just” (how strange for a science writer to be dismissive of these things). To teach people to think of themselves as the helplessly debilitated victims of a mysterious illness is to teach them to be sick forever. Sometimes, the poison is the label.

Listened

Lana del Rey, “A&W”

I was a Lana holdout for way too long, purely because she seemed too exactly like the kind of thing I’d like for me to want to get involved. Sylvia Plath lyrics, Julie London crooning, hip-hop beats, David Lynch aesthetic? Ugh stop trying so hard to get my attention, Lana. A kind of reverse Groucho logic — I wouldn’t want to be a member of any club that I’d want to be a member of.

Anyway, joke’s on me because of course she’s great, and this year’s album Did You Know That There’s a Tunnel Under Ocean Blvd felt like the summation of her great self-mythology project, teasing the “real” Lizzie Grant under the Lana persona more confidently than ever before. This is probably the basic bitch track to pick as a standout, but that’s OK because I am a basic bitch and you can find me in the Beverly Center (Lana joke: you’ll have to listen to the album).

I love the unrelenting self-coruscation of the first (sung) part of the song. Verse three still feels like a body blow even after dozens of listens — “I mean look at my hair/ Look at the length of it and the shape of my body/ If I told you that I was raped/ Do you really think that anybody would think/ I didn’t ask for it?” You can call it a commentary on sexual violence, but it’s also a dangerous kind of a flex. And then you get the pure joy of chanting along with the second (rapped, kinda) part: “Your mom called, I told her, you’re fucking up big time.”

Watched

The Red Shoes (limited theatrical release, Prime)

I saw The Red Shoes for the first time this week — I have a bad feeling that because my introduction to Michael Powell was watching Peeping Tom at some point in my teens, and because the legend around Peeping Tom holds that it’s both Powell’s most extreme film and the one that ruined his career, I felt like I’d started at the top and neglected digging into Powell and Pressburger.² Not that there’s a theme to this newsletter but: joke’s on me, because every P&P I’ve watched, I’ve loved, and The Red Shoes most of all.

The line between The Red Shoes (1948) and Peeping Tom (1960) is clearer than that legend would have you believe, in any case. The Red Shoes is — as Pamela Hutchinson said in the intro I saw — a horror movie. (She’s written a BFI monograph about the film and I’m excited to read it.) Not as explicit as the proto-slasher of Peeping Tom, but psychologically disorienting and intense. And, like Peeping Tom, obsessed with the obsession of artistry, and with female obliteration as the cost of that artistry.

I don’t think I’d say that P&P were misogynists: I Know Where I’m Going! is a delightful story of feminine pluck, and The Red Shoes never doubts Vicky’s (Moira Shearer) talent and commitment, though she’s forced to pay a colossal price for it. I think instead that they were among the unusual male artists who understand misogyny and can take it seriously as a subject. That is, in any case, irrelevant to the gorgeousness of the film and the extraordinary way in which the dance sequence show Vicky’s psyche collapsing into her own performance.

In a way, returning ballet to the register of horror is simply doing right by the source material: I enjoyed Victoria Smith/Glosswitch on the frightening origins of The Nutcracker in ETA Hoffman’s fiction. And I’m reminded, though I haven’t seen it, that in 1951, P&P made The Tales of Hoffman.

Read

Malcom Gaskill, The Ruin of All Witches: Life and Death in the New World (Penguin)

I impulse bought this earlier this year because I liked the cover, I like witches and the reviews on the back sounded promising. It was a good call: it’s a vividly detailed history of one bout of witchhunting is Massachusetts in 1651, drawing on documents to sketch the tensions, fears and paranoia that could drive a community to destroy its own — one of the underappreciated things about witchcraft beliefs in the 17th century is that they were not a function of ignorance, but of education, bolstered by learning and enshrined in legal process, so they’ve left a lot of paperwork behind.

Another underappreciated aspect is the extent to which the victims were also collaborators: people accused of witchcraft didn’t only confess under torture, but because they truly believed they were summoning the power of the Devil. Gaskill tells this part of the story brilliantly through the tragic lives of Mary and Hugh Parsons — people who thought and felt in many ways like you and I, but believed impossibly strange things. The best history reveals the past as simultaneously painfully familiar and shockingly alien, and this passes that test.

Gimme, gimme more…

• I nominated Hannah Barnes’ Time to Think as my book of the year (though the “read for fun” bit of the title on this article is probably a little misleading given the subject).

• Literally insane:

• Good Christmas TV tips (i.e. not The Crown): Mog’s Christmas (Channel 4, Christmas Eve), Ghosts (BBC 1, Christmas Day) and a Mark Gattiss adap of an Arthur Conan Doyle: A Ghost Story for Christmas: Lot No. 249 (BBC 2, Christmas Eve). I haven’t loved the MR James ones he’s done previously, but Kit Harrington and Freddie Fox vamp it up nicely here.

• Should have linked to this a while ago: a very enjoyable chat I had with Sophie Walker about Toxic for her newsletter.

• “Britain is Slough House.” Helen Lewis on the great, great Slow Horses (TV adap and novels).

• Janice Turner on Madonna’s rebel old age.

• Pravina Rudra meets Gen Z, the normie cohort.

• Ultra-long read on the crash between the New York Times’ journalistic values and audience capture by James Bennet, preeminent roadkill of that collision. Worth reading on the side: Phoebe Maltz Bovy gives the content provider’s view on the creation of the opinion economy.

• Just a bunch of really good cartoons:

  

1. One version of the story I tell about myself is that through school-avoiding, I learned the hard lesson that I need to work to achieve, and so when I got to university I went to every seminar and lecture, even while heavily pregnant. But the other version is this: as soon as I didn’t have to deal with school and the corridors and the disinfectant and the nasty plastic chairs and etc, I stopped having a problem engaging with education.

2. I would have sworn down that I saw Peeping Tom as part of the Moviedrome series on BBC 2, but searching BBC Genome says this is a false memory and the last time Peeping Tom was broadcast on the BBC, I was 11. I was a morbid child but not that morbid. If anyone knows when it was shown on ITV or Channel 4 during the 1990s, hit me up.