Trash talk to a rubbish heart. A holiday in the sun. An unhinging at the Freud Museum and free association (football). Boyhood, dads, alcoholism. An attack in the night, country life, and finally Parkinson’s
‘Oh what an ordinary day,’ sings St Vincent in Birth in Reverse, ‘take out the garbage, masturbate.’ *
Meanwhile, in White Sands, a recent book of travel pieces, Geoff Dyer suffers a mystery stroke putting out the trash at his new home in Los Angeles. The troubling event inspires a different kind of excursion for the wandering author, a journey into modern medicine, scans, consultants and confused diagnoses.
Outside the Freud Museum in Hampstead, the large green bin on the pavement is covered in stickers taken from the museum shop. I’m taking this is a joke about the bulk contents of the unconscious mind. Naturally, I take pictures.
|the trash aesthetic|
Each entry ticket to the museum comes with a sticker. I put mine on my glasses case, but next day the box breaks. In under twenty four hours of Freud on the case, it’s become unhinged. I draw my own conclusions and ditch the case.
Perhaps I’ve got trash on the brain.
There are two means of rubbish disposal where I live. There is a communal garbage chute for regular waste – it makes a satisfying distant phutt as it lands in the collection bucket two flights down. Additionally there are two recycling hoppers situated at the rear of the building. Sometimes the hopper lids are inexplicably locked, requiring arduous grappling (and it’s just started to rain) while you attempt to somehow feed your paper waste through the letterbox slit. Who’d lock a recycling bin? How could anyone hate the planet that much?
The rain becomes heavier. A small child comes shrieking round the corner; the shriek pierces deep inside my hearing device. Wednesday’s turned out frustrating and it’s not even eight am.
And then as you pull the bike from the garage you remember today’s the day you were going to pump the tyres. They sorely need it. But this takes ten minutes, and lots of puff, and really you’re actually already out of time. So, you promise to pump the wheels tomorrow, like you promised yesterday morning, Monday morning, and all of last week. You ride to the main road, turn right into the thick polluted stream of buses and cars (four wheels bad) and roll down the slope towards central London.
The recently re-surfaced road is super fast in the rain. However, the road fixers only filled in and re-surfaced the top half of the hill, leaving the bottom portion, down towards the lights at the junction, still cratered and lethal.
You don’t want to go head over handle bars this morning. (I sometimes like to remind myself of life’s obvious preferences.) That big loud fat Jeep behind will steamroller your head until your Flat Stanley. And you don’t want to be Flat Stanley. Not today when you’ve got the heart clinic. So you’re extra tight with the brakes all the way down to where the road bottoms out alongside the hospital.
Pity the heart appointment’s not scheduled at the hospital close to home. But the GP said I shouldn’t wait 12 weeks, which was the best the local cardiology clinic were offering. So I took the slot for seven days’ time in west London.
It’s an evening clinic in Chelsea. I work late and go straight from the office. At the last junction, a black cab pulls out from a side road, heading straight for me like I’m not there. The driver hard stops and glares at me with an evil face. I go past slowly and he blasts on the horn to hurry me along. He’s so cross: one might illustrate him with cartoon jets of steam exploding from the ears. Why is he so mad at cyclists? He’ll kill one if he continues like his.
I could stop and argue. I’m not adverse to that kind of public altercation. Oh no. But the cardiac appointment is in fifteen minutes: my prime narrative for the evening.
The heart doctor is bouncy and hale. He exudes posh cheer as he shakes my hand, then sweeps me into his surgery, which is decorated in many shades of grey. He’s really very posh, actually. His name is Vivian. If this was a Richard Curtis film, he’d be Hugh Grant’s bumbling brother.
I’m last on his roster for the night. But this doesn’t mean he rushes me through. Quite the opposite. He sort of kicks back to chew the fat, waxing almost contemplatively about hearts and treatment. If he pulls a bottle of Scotch from the desk drawer and fills two tumblers, it won’t seem that odd.
But he doesn’t offer me a drink. He confides instead. He says some patients who come to see him, he does all the checks and tests, ‘But truthfully, it’s quite perfunctory. There’s no point. Just one look at them, you know they’re fucked.’
Wow, the doctor said fucked. A doctor never said fucked to me before. I frown in surprise and he frowns back. This lapse in tone, the loose coarse words, signal an absence of pretence, but also perhaps his pitch for street-level diagnosis. Where did he just place me on the socio-economic scale and what kind of physical shape does he think I’m in? Do I belong in the ‘fucked’ category? It seems unlikely he’d say this is if he thought so. Maybe just a bit knackered, slightly buggered, semi kaput.
He takes my pulse, blood pressure, does an ECG. He nods at my bike bags.
You exercise regularly?
I cycle to work and back daily.
How breathless do you get? Can you keep up with the other cyclists?
This is a vexed question with a long answer. I should simply say yes, or no. Instead, I give him the extended account. How I came to buy a single gear bike three years ago, against everyone’s advice. I explain that I bought it because I was exasperated with the high maintenance costs you get with gears and all-weather commuting in London.
The words start to come fast now. As if this might help. I’m determined to reveal all about my bad bike purchase.
And as soon as I bought the bike, I say, the first time I rode it home, I realised instantly that I had blundered. A single gear bike has no gears. Nothing for fast or for steep. Of course there are no gears, you fool! I still occasionally find myself in the saddle, repeating the self-admonishment, frustrated at how much harder cycling can be with no gears. That unless you’re super fit and super driven, it’s not easy keeping up with the racers; and let’s not even begin to discuss hills and climbing them gearless.
I know the story is long and tedious. But my retail stupidity not only bewilders and amuses, it feels like a parable. I’m not sure what the parable could mean. Just that in recent times so many personal tales feel like parables, revealing something we’re not quite understanding about the lives we live today.
It is plain that I haven’t persuaded the heart doctor of the universal appeal of my single-gear narrative, by the impatient way he tears the velcro off the blood pressure cuff.
He re-phrases the question, But you’re not that far behind all the other cyclists?
No, I mutter. Not that far at all. Sometimes I’m even in front.
Good. Ever feel dizzy?
Almost every time I stand up. My GP says it’s because I’m tall.
He said that?
My healer of hearts chuckles and flops back into his chair.
Any pains in the chest?
He pauses, his eyes wander, then settle at just above my right shoulder. Is he pondering my hearing aid?
There are various options for treatment, he says. These things are often quite complicated to nail down and treat effectively.
What kind of things?
I’m sorry. You have atrial fibrillation.
I give him my question mark face.
It means you have an abnormal heart rhythm. It’s irregular and too fast.
Is it serious?
It’s not that rare. There are different ways to go with management.
He starts to outline a conspectus of options. But I stop hearing the meaning. The brain at least attempts to keep up, but my eyes start to wander over his dark hair, to the shelf behind his desk, and a pastel plastic model of a human heart disassembled in sections. I imagine the pieces rising up and dancing around the doctor’s head.
I hear his colourful technical terms of heart analysis and treatment: P waves, irregular ventricular rates and sinus nodes. Vitamin K antagonists and novel oral anticoagulants. This isn’t the kind of language that welcomes you into the fold.
He refers blithely to tongues of atrial muscle extensions, with their abnormal electrical discharges. There is also an ablation procedure, involving multiple catheter insertions with a long needle and requiring punctures in the groin.
Long needles puncturing the groin. Now, that’s going to hurt. Any reference to pain inevitably slows up my mind even further. I dwell abstractly on pain – what pain, how pain, will I be able to tolerate said pain? (What very little courage in the face of hurt.)
And so in real terms I’ve stopped receiving. The healer of hearts may just as well be talking to a tree, or that skeleton in the corner. I can see the words continuing to flow from his mouth, but on mute.
I’ve stopped dwelling on being in pain and have moved on to wondering which newspaper the consultant reads. Is it true all doctors prefer the Telegraph? (That all doctors are Tories?) Did the consultant vote Remain or Leave, and what difference does it make for getting better?
The heart doctor clears his throat, pulling me back to here and now. He says first up we’ll get you on blood thinners and then do a cardioversion and see if that works. A cardioversion means delivering a controlled electric shock to the heart, he says. We do this under a general anaesthetic. We have to wait first for the blood thinners to do their thing. We’ll perform the cardio in six weeks’ time.**
Behind him, the pieces of plastic heart jump up from the shelf and dance around. In my head that is – an impromptu homage to Dennis Potter.
|neck bone connected to the head bone|
The tune for the heart dance is the appalling Goodness Gracious Me (sung by Peter Sellers and Sophia Loren). ‘It goes boom boody-boom boody-boom boody-boom. Boody-boom boody-boom boody-boom-boom-boom.’ There’s no controlling the brain.***
The following week, returning from a night with Silba in the town of busy roundabouts, something peculiar happens as I look through the train window to the flatpack landscape beyond. An airplane is descending towards Heathrow in the grey summer sky, descending in the opposite direction to where the train is headed. I’m sitting with my back to the engine and therefore it’s like the train is going backwards. And for a few moments it feels as if the airplane starts doing the same, pointing one way, but actually reversing. The train is dragging the plane back east.
This brief but intense point of focus warps reality. I should blink to end it, but instead I stare harder as the illusion gets worse: for now it appears as though the airplane has actually stopped moving altogether, and is hanging in the sky – just hanging, hanging, hanging. For how long can it just linger like this? It’s a worry.
And then the view from the train moves onto a different oblong of grey sky – and the alarming optical illusion vanishes.
Fast forward a few weeks and I’m sitting cooped up inside a plane crossing over London. Now it is me descending towards Heathrow. No reverse, please. No hanging. The woman on my right has her fists clenched tightly and her head bowed. She has been like this for most of the two hours since we taxied to take off from Zagreb. The woman on my left is young but has terrible eyes. Even with reading glasses she must hold her free copy of the Daily Mail super close to her face.
She’s reading a history in pictures and captions of David and Victoria Beckham’s property portfolio. There are a lot of photos of luxury building exteriors, while in contrast the novel on my tablet has only words. Lots of words.
|wanna change my clothes, my hair, my face|
My summer holiday reading is Dancing in the Dark, Book Four of Karl Ove Knausgaard’s series of autobiographical novels. I only got to three quarters through the 500+ pages by the time the vacation was done. I’d anticipated better progress, but the fortnight in Croatia, land of a thousand islands, turned out more social than reading library. Most of the trip was spent on a small Dalmatian island filled with artists. The artists were gregarious and pleasant – they liked to come for coffee with Silba, and, in return, she liked to go to their place for lunch. And then later there was dinner. Before a meal could begin, the artists liked to document the event, taking turns with group photos on their phones. One grows surprisingly accepting of dinner eaten lukewarm.
There were no cars allowed on the island (pop. 292). Not even bicycles. An artist showed us a caper plant one afternoon as we walked up the central path from the seafront. It grew like a weed between the cracks in the cement panels of a garden wall. The path led to the hub of the island, a mini village square, with cafes, church, post office and shop. Sideways off the square was the cafe where the artists liked to meet for ice creams, coffee, or drinks after sunset.
|three actors and a donkey|
One evening towards the end of our stay, the artists formed a procession and walked from the village to a shallow disused quarry, where a theatre group put on a play about eating children. The open-air set featured a brazier, three live donkeys and a pile of manure. All of the adult male actors had beards and were topless.
|unsung hero of agriculture|
The next day, I took a break from the coffee round and went for a solo hike in the heat. Leaving the village on a different path, I saw two abandoned vintage tractors and a decommissioned crazy golf course. The dead crazy golf lay overgrown and sad in the sun.
|under the crazy golf, the weeds|
The mini hike took me north along a winding unshaded track and through a pine woods leading down to a shingle cove. The cove was deserted and I went for a swim. The sea was clear and warm, and floating on my back, looking into a blue sky without a plane or a speck of cloud, I remembered being 18 and on holiday and reading The Magus.
My two week Dalmatian vacation is the longest I’ve ever been separated from the Annoying Son in his life. Sixteen years. During my time in Croatia, his long hot summer since finishing his exams became intertwined in my thoughts with the late adolescence described in painful detail in Knausgaard’s novel. And gradually, the overlap became threefold as the memories from my own teens started to flow.
|when we knew nothing|
Knausgaard’s six-part series starts with the novel A Death in the Family, which covers the aftermath of the demise of the author’s middle-aged father.
This is not however the end for the father in the Norwegian’s story cycle. In fact, he remains a cruel, unfathomable and frightening figure throughout the four novels so far translated into English; the black heart of the many thousands of pages of Knausgaard’s auto-fiction.
By Dancing in the Dark, despite having grown up, lived and loved, and become a father himself, the author still cannot cast off his dad’s dark shadow – ‘Whenever the phone goes or someone rings at the door, I think it’s him.’
As he recounts his teen years, Karl Ove also witnesses the beginning stages of the father’s alcoholism, a compulsion that would kill him. This is a man who was diligent in life and abstemious into middle age, but then abruptly switched to being largely inert and inebriate. He separated from his first wife and began a new relationship with a younger woman as he started to drink – and drink, and drink. The booze didn’t sneak up on him. He wilfully, precipitately plunged into an extreme regime of intoxication. Through glass after glass, from bottle to bottle, Knausgaard’s father inexplicably destroyed himself in a nihilistic act of self-erasure.
The teenage Karl Ove doesn’t understand what’s happening. His father is a mystery – the booze, but also the coldness, the anger, the repeated shaming of him and his older brother. He asks his mother why, and she replies that she cannot say.
As my plane prepared to land into Heathrow, the grown-up Knausgaard recites extracts from his father’s deadpan drinking journal (which only surfaced after his death).
‘Wednesday 7 January
Up early, 5.30
Bus 6.30. Nipped a quick snifter here too.
Taxi home. Cold house. Warmed myself on duty-free.
Thursday 8 January
Tried to get up for work. But had to ring Haraldsen and throw in the towel. Grinding abstinence – stayed in bed all day…
Friday 9 January
Up at 7.00. Felt lousy at breakfast.
Work. Survived the first three lessons. Had terrible diarrhoea in lunch break… Home for repair – rum and Coke. Incredible how it helps. Quiet afternoon and evening. Fell asleep before TV news.
Saturday 10 January
Slept in. Made short work of sherry in the kitchen. Evening spent in the company of blue Smirnoff!
Sunday 11 January
Had a feeling when I woke up it was going to be a bad day. I was right!’
The journal continues, page after page, a slow death measured out in units, or ‘snifters’. The father drinks every weekend and most school nights. Although he tries to have booze-free days, he is unable to stick it out – feeling restless, exhausted and hearing voices. His hands shake and he can barely communicate while sober.
I study the drinking diary with shock and fascination, absorbed as our plane lands in London. Tons of metal hitting the tarmac at how ever many hundred miles per hour, and I hardly notice.
|John Richards, Wolves, the 1970s – all those goals and only one measly England cap|
I think of my father as I wait for a Tube train into London – a man who vehemently claims he’s never been drunk once his whole life. On holiday I shared some of my quirky parent stories from the family repertoire. Personal anecdotes to near strangers. The artists might have pondered why the Brit had to spill such peculiar biographical stuffing. I suppose you can only marvel at last night’s extraordinary sunset so many times. But all the same it was an curious thing to speak about.
When I was seven I asked my parents for a Wolves football kit for my birthday. At that age you tend to know your desires very well and I really wanted that strip – the beautiful gold top and socks, the black shorts, the chest badge of the duplicate upper case Ws, with a wolf jumping over the letters.
On the morning of my birthday as I opened my gift, I believed for sure that I would soon see my Wolves kit. It felt like everything I’d ever wanted. (I might even get to try it on before school.) But as I pulled away the last layer of wrapping paper, inside a transparent plastic bag lay an Everton strip – blue and white. Not even an official Everton kit.
I had no allegiance to Everton. Had never expressed one. Why did my dad buy me this kit? I still don’t understand. I tell Silba the story walking on the island one afternoon. She asks what did you say? I said thank you, of course, and tried to look pleased for my parents. There was no complaining at your mum and dad back then. No, what kind of dumb gift do you call this?
I’m seeing my dad in a few weeks. I could ask him to explain the thinking behind the outrageously wrong kit, although plainly it is too late to do anything. Still, it would be interesting to know why at last.
But is it worth asking these kind of questions? Where does it take you and once they have started, when do the questions end? The man who picked out the wrong birthday present is frail and old and mostly benign now. Would I be challenging the same person? Is the man who asks me to book his train ticket because online transactions are confusing, is that the same man who used to scare us four kids so badly that dinner time could turn into a silent torture? The stern father who used to joke he could make one of my sisters cry, just by looking at her? ****
In the later stages of Dancing in the Dark, Knausgaard discovers his own reckless thirst for alcohol. He repeatedly gets rat-arsed drunk and does wild dangerous things and can’t remember. (He also endures what has to be the longest series of premature ejaculations in the history of literature. It is a running gag through the 560 page novel, for which he only finds resolution in the final paragraph of the book.)
There is always this idea, you hear it said often, that the apple doesn’t fall so far from the tree. One day it will be the annoying son’s turn to write down his regrets and skewer his parents. So, let’s get it on record now: at the time we bought the kit for his birthday, he said he was a Chelsea fan. That’s all we knew. We even bought one with his name written on the back. Were we somehow supposed to know he’d secretly switched to Man Utd to please his step-brother of the time?
|after the casting couch, culture’s most famous daybed|
How many sessions on the couch will it take for the Annoying Son to clear the stables of childhood dreck and trauma?
There is a room upstairs at the Freud Museum where visitors are invited to lie upon a therapy couch and let their minds wander. I watch in front of me twin sisters in matching pink T shirts take turns on the daybed, snapping each other’s picture.
Beyond the daybed is a table with pencils and a block of cards called ‘My First Thoughts on the Couch….’ Visitors are urged to fill out a card. I write ‘Ceiling’. But actually, the thought train flows like this: first I think of Lunch. Then Sex (probably a reflex gag about stereotypes of the prurient shrink). Then it’s Lunch again – I’m very hungry. The fourth word is Burden. Not so much as in need of relief, but burden as the load that one must unpack in order to achieve a better understanding. Lastly, as I relax, exhale slowly and look straight above me, I think of Ceiling.
So, I settle for the fifth and not the first word that came into my head. And yet settling for ceiling is a kind of screen perhaps – a conscious topsoil concealing buried issues that might well be excavated for closer scrutiny.
|tell me about your mother|
There are more than 2000 antiquities in Freud’s north London home – where he died in September 1939. His collection of original Egyptian, Greek, Roman and oriental figures, statues and carvings, fill numerous display cabinets, chests and bookshelves, and are also to be found lined up on most other available surfaces – but not a trace of dust.
The rooms of Freud’s house in Hampstead were arranged to replicate the lay out of the family home in Vienna – the apartment in which the family lived for decades, but vacated in 1938 to get away from Hitler.
Shortly after their arrival to London, Freud wrote in praise of his newly adopted country, of his gratitude to ‘lovely, free, magnanimous England’. So many have come here in the past to seek refuge, but nowadays so many encounter detainment camps in Calais.
Freud’s study has been kept intact for all these decades. Preserved as if he just popped out. There is a manuscript open upon his desk, a spyglass, pen and ink, and materials for the cigars that killed him. There is also an army of ancient figures standing guard, with their backs to the famous psychoanalytic couch, draped in its multicoloured Iranian rug.
Was Freud a keen collector or an obsessive, compulsive hoarder? Antiquity, archaeology – objects formerly buried but unearthed and carefully examined for meanings – was the much-favoured analogy he used to explain the work he covered with patients and their discontents.
Freud argued that human behaviour is determined by unconscious motivations that stem from childhood experiences and our complex emotional attitudes to our parents. (Just look at the artist Ragnar Kjartansson, who every five years asks his mother to spit on him, with the expectoration filmed and uploaded.)
The traces of our unconscious, according to Freud, are to be detected in various phenomena – from medical symptoms to our choice of words; slips of the tongue and the character of our dreams. Seeking to excavate and decipher the hidden meanings from the unconscious is as much as anything a memory game.
|a Freudian slipper|
And yet memory is elusive and often made up. Freud was not unaware of this problem. ‘Freud is saying that memory is strangely both selective and fragmentary,’ says the writer and analyst Adam Philips in a radio discussion about the father of psychoanalysis. ‘And you find you can’t remember very much. The same is true of dreams… Extremely vivid at the time. But when you wake up, you either can’t remember very much, or it is extremely fragmentary. And Freud is saying experience might be a bit like that.’
Freud’s legacy is considerable. But perhaps his key message is we shouldn’t necessarily expect life to be happy – because we can never really know, or master, what’s going on inside. Indeed, Freud argued that often we are emotionally invested in staying ignorant of our unsettling truths.
But as summer rushed past, as it always does (‘Summer’s not as long as it used to be’ sings Frank Ocean in Skyline To), I could not afford to simply disregard the unsettling truths around my sleep disorder.
The disorienting parasomnias were getting more frequent and unruly. On a short seaside holiday with the Annoying Son and his mother (a trip which also involved a surprisingly heated dispute over how dangerous is a field of cows), we stayed four nights at an airbnb overrun with dolls. The artist owner was seriously into childhood, Victoriana and, most of all, puppets, marionettes and dolls. Her collection was voluminous and spooky. Some of the dolls had been painted, while others decapitated, or jointed into distressed pieces carefully distributed about her home. One set of doll’s legs could be seen disappearing up the iron fireplace in the lounge.
The Annoying Son said the figures ‘creeped him out’. But also, still exhausted from the rigours of his GCSEs – finished four weeks earlier – he simply couldn’t face rolling out the lounge sofa bed where he was supposed to be sleeping. Instead, each night he bunked with me in the fusty rear bedroom.
And one night the inevitable happened – I attacked him. Not just in my dreams, but in reality. I grabbed him by the shoulders in my sleep. I shook him and snarled something aggressive in his ear – but we don’t remember what.
The Annoying Son took it well. No hard feelings, etc. Next day he laughed it off. But all the same, I felt bad. You should be able to go on a summer trip with your dad and not be attacked by him at 4am. The event confirmed that it was time to return to the sleep consultant and get my results from the sleepover.
|son of man|
Six weeks had passed since the last trip to the clinic in the hospital in the square with the church where Sylvia Plath and Ted Hughes were married. The same square where the publisher Faber was housed for so many years – from Beckett to Larkin, Genet to Eliot.
On the third storey of the main hospital building built out of red brick and linoleum floors, the consultant is different to the one from the last time; who also was different to the one before that. My latest guy is South African and gives me an hour of his time.
|the different stages of sleep|
He throws opens the telemetry sleep report on a large screen winched above the desk. There are pages of brightly coloured charts and graphs with blue zig-zags and pink blocks of data. In addition the report features a detailed written account of my night with monitors. Each and every disruption is listed, described and timed: captured on camera, as well as by ’20 active channels of scalp EEG, including mastoid electrodes, two channels of EOG, two of EMG (submentalis) and one channel of ECG…’
The consultant scrolls down the document, building up to his speech concerning the content’s meanings. This is a data goldmine, is what I’m thinking. I must have a copy.
I ask if he can do me print out. I worry he’ll say no, even though it’s my sleep, my parasomnia, but he replies, sure. I will take it home tonight and read through it slowly. I feel my temperature rise briefly at the contentment. (Sadly, his printer’s just black and white, the colours – the pink, blue, orange and green – didn’t make it.)
The document reports that ‘Renlau settled to sleep at around 11.15pm…. [And] woke at 7am. The patient comments that he woke up tired and states that he didn’t feel like he had any ‘‘major sleep events”, unlike recently at home.’
The telemetry survey, also known as the ‘overnight polysomnography’, tells a different story, of a busy, complicated night of ‘arousals’. The night chronicle reports ‘posterior alpha rhythms’ spiking at ‘35uV in amplitude’ and ‘Intermixed scattered theta components’. In the early stages of sleep – the non-REM periods – a total of 86 Awakenings’ [mostly] caused by periodic limb movements (PLM) were recorded, ‘mainly consisting of dorsiflexion of the foot.’
The central section of the report covers the REM periods of the sleepover. Although REM accounts for only 16% of shut eye, it is the main field of action, packed with intervals featuring ‘significant loss of REM atonia [that is] often associated with purposeful movements or vocalisation.’
REM atonia is when the muscles are paralysed – to keep the sleeper from physically enacting any vivid dreams. Amid the print outs, graphs and hypnogram, the break downs assessing sleep efficiency, latency, ‘Oxygen Desaturation’ and an arousal index, there is a simple tally and chronology of the many instances during the night when the atonia didn’t engage and I wasn’t paralysed like one needs to be.
The report lists and time-stamps every instance (in brackets).
‘Movements of the Mouth (01:09:39, 03:15:11), such as chewing (01:07:13, 03:24:55, 06:40:18, 06:43:07) or rhythmical jaw movements (04:56:05, 05:16:14, 05:16:33)’
The next to be itemised are ‘Movements of the upper limbs and body: fingers, finer movements or tapping, (01:01:55; 01:10:10, 03:21:17, 04:57:05), hands (03:23:22, 03:32:39, 04:56:43), which can appear jerky at times (03:15:05, 03:16:44, 06:34:25), jerks of the arms (01:00:22), jerks of the shoulders/upper torso (03:13:19, 03:15:23, 03:30:28, 04:49:45, 05:18:36, 06:40:05)
(Jerky) Movements of the Head (01:03:54, 01:06:38, 03:10:54, 03:13:01, 04:51:06, 05:17:19)
A combination of the above (01:05:45, 03:14:27, 03:21:28, 03:21:58, 04:53:53, 06.41.37)’
The transcript elaborates upon some of the REM sleep activity: ‘the movements at times appeared to be purposeful (01:01:56, 01:02:15, 01:04:18, 03:15:29), such as pointing (01:08:15, 03:09:53, 03:30:41), or waving (03:42:31). He does appear to punch out violently at one point (03:30:56). Sleep talking could also be heard independently or in association with these movements (01:08:15, 01:08:32, 03:17:27, 03:23:47, 03:28:16)… There is a sudden arousal during REM associated with screaming at 01.10.52… (see graph) One on occasion there is a slightly prolonged event where the patient talks loudly and is seen to be pointing. (03:21)’
|There is a sudden arousal during REM associated with screaming|
What was the patient screaming about at 1.10, and what did he point towards at 3.21?
The telemetry sleep survey concludes, ‘In summary the study confirmed the clinical suspicion of REM sleep behaviour disorder. [RBD]’
The consultant turns his chair to face me and to verbally support the written diagnosis. He says I have RBD (REM sleep behaviour disorder) and an extreme version. I say I agree and have thought so for some time.
We discuss pill therapies to keep a lid on the night enactments. He says Clonazepam is an addictive drug and he doesn’t want me taking this for the rest of my life. I think, well, if it’s for the rest of my life, does addictive matter?
We get to the extreme content of the dreams. I tell him the violence scares me and makes me do dangerous things. Just a few nights ago, I woke up at the bottom of the bed, trying to kick in the wardrobe – like it was somebody’s front door and my life depended on getting inside. I’m bothered and fascinated that the dreams are so extreme. What are the fight or flight scenarios trying to tell me?
‘We don’t know why the dreams are so terrifying and violent,’ he says. ‘It’s a puzzle. Maybe it’s the case that people have more violent dreams than we previously realised. That RBD merely brings this dream reality to the surface.’ He opens his hands palm side up and shrugs. ‘The suspicion however is that it’s more complicated than this. That the violent dreams are somehow caused by RBD. But how, why….’
I read somewhere that only men suffer from the condition. ‘Why do women not get RBD?’
‘We actually think women also suffer from the condition. Almost certainly. But it appears to be less frequent. And the symptoms are different. Research suggests that women with RBD do not have violent dreams.’
‘Venus and Mars.’
He smiles and shrugs. ‘Perhaps it’s a gender split, yes. It seems that if a woman suffers from RBD, she may dream about making a cup of tea, for example, or walking in a field of flowers. In which case, she will not feel under threat and is less likely to physically respond to her dream. Or, the lack of paralysis, or muscle atonia, is less of a danger as she enacts something gentle and not threatening to her wellbeing. That is why we suspect the condition is under-reported by women.’
I can’t believe what he’s saying. ’Women make cups of tea?’
‘Or simply they lift a tea cup to their lips and then return the cup to its saucer.’
‘And carry on with the rest of their night? No chucking themselves out of bed?’
The consultant nods. I envisage a glazed china cup with a repeating picture of a rose. There is a gold enamel rim also. The consultant sits quietly while I consider this tea cup from all angles. In my bad nights I’d treat this delicate china cup as a threat. Somehow the cup would be trying to hurt me and I’d want to climb out of bed and chase after it. The urge would be to hurt the cup, before it hurts me.
‘If it were my dream. I’d want to kill that cup.’
He looks at his shoes.
I say, ’We should talk about Parkinson’s?’
He says, ‘Yes’.
The subject has been loitering on the outskirts of the conversation since we first sat down. The consultant confirms that it’s most likely the sleep disorder will lead to Parkinson’s disease. ‘Some clinical studies report roughly a 70% progression from RBD to Parkinson’s. Others indicate as high as 90%.’
He says there’s no way of predicting when onset might occur. Could be soon, or years away. Currently you show no symptoms, he remarks.
I ask what to watch out for, although I already know from my online reading.
The consultant reaches for the stapler on his desk. ‘With Parkinson’s, you will experience tremors with your hand at rest. Like so.’ He lets down the stapler and makes his hand tremble vividly. ‘Then, when you bring your hand into action, such as holding onto the stapler, the trembling stops.’ And it does. ‘But, as soon as you release the implement….’ He pops the stapler back down and the trembling returns.
‘And this will be something that you cannot control. You will also experience a muscle rigidity and a slowness of movement. Your walk will become more akin to a shuffle.’
More akin to a shuffle. I think of zombies. The consultant lifts up out of his chair and crosses to the door, where he turns and walks back across the room. But now he moves with a slow, shuffling carriage, stiff limbs, and his shoulders slumped. The consultant has obviously performed his Parkinson’s walk for many patients before me. He’s good at it. I tell him he could work as an extra on The Walking Dead.
He outlines several additional early-warning signs of Parkinson’s – stooping, a loss of smell, dizziness, a dead stare.
‘This is also known as “the masked face”’, he says. ‘The vivacity goes from the subject’s facial muscles and their expression becomes flat and serious. You will look depressed.’
‘Given the circumstances you may well be.’
‘For sure. It’s a frequent secondary symptom. But in general, with Parkinson’s, you will know when it’s time.’
‘What causes the REM sleep behaviour disorder, that causes the Parkinson’s?’
‘It’s complicated. We don’t know.’ He stares at me – a long pensive pause. ‘Have you ever by any chance lived in the countryside, or on a farm?’
Such an unexpected question. The consultant says farm, and I instantly picture me aged four, in the cobbled front yard. It was outside the farmhouse on the 250 acres in the Midlands that my dad managed; where we lived until I was six. Me in my yellow swimming trunks wrestling in the cattle trough with our dog. I’m clutching my fake dagger, pretending the dog’s a crocodile and I’m Tarzan. The dog would obediently go along with the performance.
‘I was born on a farm.’
‘I see. Well, there does appear to be some kind of correlation between men who have lived on farms and RBD. We don’t know why this is so. Perhaps the extensive use of pesticides. But no link as yet has been proven. It could equally be a red herring.’
My hour is almost over. The consultant devises a pill plan to try to curb the crazy nights – ‘symptom relief’, he calls it. He prescribes two medications in harness and then names a third we will try if the current plan fails.*****
We agree to meet in three months. As I leave, he assures me that Parkinson’s is no longer the devastating diagnosis it used to be, that treatments have ‘vastly improved’ in recent years.
I walk out of the hospital and sit for a while in the square in a soft evening light.
Some nights I still dream I return to Park Farm. We’re driving up the steep rough track to the farmhouse at the top of the hill. It’s the place where I broke my leg and got the stitches in my back.
All of my siblings have visited the farm as adults. I’m the only one who hasn’t returned. The siblings all say the same thing – don’t bother, there’s nothing to see, it’s all gone. The farm became a golf course years ago and the farmhouse was razed.
I get the same dream of return roughly once every twelve months. The old farm keeps nagging away in the unconscious. Recently, occasionally, I’ve looked it up on Maps. I stare at the vacated space where the fields and the house and the yard and cattlesheds used to be. All absent now. And the pigsty, and the hay loft and silo, and the meadow and the stream where I broke my leg, and the woods and the hill with the rope swing, and the fields that seemed to stretch for ever through my young eyes.
In Queen’s Square, with the late afternoon spread out against the sky, I peer over the road to where Faber once lived. ‘I grow old … I grow old …/ I shall wear the bottoms of my trousers rolled.’
But then I think of something more cheerful I read recently and copied down. As a preface to the piece In Time of War, WH Auden wrote, ‘It’s better to be sane than mad, or liked than dreaded;/ It’s better to sit down to nice meals than to nasty;/ It’s better to sleep two than single; it’s better to be happy.’
So, the next blog piece will have nothing to do with health, because two in a row on health is more than enough for a long, long while to come. And the next one will be smiling and may concern holidays, the joy of getting lost, or could be something to do with face reading. Or perhaps the curious story of screen star Joan Crawford’s knitting.
|don’t look back|
* The St Vincent song is called Birth in Reverse. The line on garbage and wanking comes in the first verse. Artists live such atypical lives. While the rest of us must estimate time of arrival to the office, St Vincent reaches for her clitoris. I feel sure she’s got it the wrong way round though. I would always favour masturbate first, then take out the rubbish. Perhaps this explains the song’s title. Here is a pick of songs by women on self-involvement: http://pitchfork.com/thepitch/886-the-13-best-pop-songs-about-women-masturbating/
** The cardioversion happened on a hot afternoon after the vacation, jolting the heart out of atrial fibrillation and into a regular beat. Next we look to see if it stays this way. The procedure involved being put to sleep with a general anaesthetic. Then they gave me 200 joules using two defibrillator paddles. The paddles left behind a pair of red outlines on my torso, like someone put two clothes irons on me – the shape, not so much the severity of the burn marks.
The main nurse explained that the body jolts with the electric shock, just like in the films,. But that the patient doesn’t actually lift up off the table.
All the staff were from overseas. Except for one nurse called Chelsea (in a Chelsea hospital) who wanted to shave all the hair from my groin, mistakenly convinced that I was in for an ablation and needed to be bald downstairs.
Where have all the Brits gone? The two medics and the anaesthetist in the operating theatre were dressed in light blue scrubs with matching hats and nice Mediterranean skin. They looked down at me and smiled like three sisters in an Almodovar movie.
I smiled back and thought, what if they just get fed up with this stupid country and our perpetual moaning – the Brexits, the rude ingratitude, all this no-foreigners talk? Why is it that one doesn’t complain too hard in a restaurant? Because the chef might spit in your soup. Well, what if the maligned finally say fuck you, Britain, you stupid, racist pigs, and give a random patient too many volts….
*** Boom-boody-boom. The first plan was to dress this blog piece with extracts and lyrics from songs with hearts. But then I didn’t find it made sense to do this. Here’s a link to plenty such songs.
**** My dad. I think we, me and my siblings, have reached the point where we’re semi waiting for him to die. There is no intentional cruelty in this. He’s lasted so much longer than seemed likely when he was wheeled out the house and into an ambulance with a heart attack in his 40s. It was around this time his turning to religion became more intense. I’m fascinated if he really believes in the after life. I know that my mum does. I often wonder how it will feel when he’s gone, what does the irretrievable, the gone for good feel like?
***** The third pill the sleep consultant may try out is called Pramipexole. I look it up and it’s a medication for Parkinson’s. (But also, in the spaghetti style of pharmacology – throw it at the patient, see if it sticks – it is also a medication for treating bipolar disorder.)
****** Park Farm. A real pity they pulled down the farmhouse. Such a lovely building – cold and damp and impractical, but with two staircases. I’ll definitely have two staircases if one day I get to design my dream home.