Hundredaire

Right, a recap of a really shitty month. Dear reader, I petition you to remember whilst reading this whole post that at the best of times I feel like an unnatural mistake and a crime against nature.

 

First – The good; A long ride out to Selby in the cold, haring along the A63 on my beloved little 125, to meet the EN500; My prospective new bike. It’s good – A handsome old machine, with a high-revving parallel twin engine, a belt drive, and a very comfortable riding position. This one comes with a touring screen, a USB hookup, panniers, a tool roll (full of tools) and a sparkly custom paint job (In Kawasaki purplish-black pearl). Of course, I bought it on the spot. Riding back in the pitch black on twisty, unlit roads, watching the frost forming a halo around the moon was a tonic for the soul.

 

6th of December was my bike test – Failed, with technically zero faults, which I consider to be a sign that I was doing rather well. Only clocked 48kmph on the hazard avoidance – I needed to do it at 49kmph. Considering that this was in deep fog, with the ground green and slippy with moss and ice, I think that I did the sensible thing in taking the course more slowly than I would on a bright summer’s day, really. Next attempt, 17th of January.

 

After that, me, my instructor M, and his wife AM, all went out to Selby in the van to pick up the EN500. It’s now safely ensconced in the bike office, basically until I pass my test.

 

About three days after this, and two days before I was due to go home for Christmas, I got a migraine. Not just an ordinary, two-days-and-it’s-done migraine, but a full-on seven day nightmare. For the first four days, I couldn’t tolerate any light; Literally, even with my hands over my eyes, and the curtains shut, at night I was still screaming that it was too bright. By day three, I was still vomiting after so much as a sip of cordial, and it was only day six before I could stand up without getting so dizzy that I fell straight over again. This, by the way, is with Zomig, morphine, and a couple of over-the-counter anti-nausea pills. Without Zomig, I assume I’d have just killed myself.

 

And then yesterday was physio. The first driver picked me up at 10am, which was where the issues started. Before reaching the ringroad she had;

 

  • Nearly crashed twice at roundabouts, as she seemed to think that priority was to the LEFT, and had seriously jarred my back both times.
  • Decided to opine at length about how I should stop taking my meds and start taking turmeric instead
  • Told me about her haemorroids, describing them as “Pain so bad [I] could never understand it”
  • Explained at length about how everyone with a mental illness was just workshy and grifting.
  • Told me about three tragic cases of beautiful young people she’d taken to hospital who had awful conditions that she had to pray for.
  • Touched my leg four times.
  • Insisted on manhandling me and my bags, really hurting my knee in the process.

Upon reaching the motorway, she drove for most of the way on the hard shoulder, or in the crawler lane, and my attempts at sleeping for most of the journey were wrecked by her veering around in the lane – Not changing lanes suddenly, just being unable to follow the lane or maintain a steady speed.

 

We got to the hospital anyway, and she insisted on checking me in, giving a load of spurious requirements to the receptionist (No, I do not need my bags carrying, or a wheelchair, and if I did, I would ask for myself, ta), and then hugging me (I froze) as she left.

 

Physio itself went well – three new exercises, and just still not being patronised or blamed, which is an incredible victory in itself. Today was with Physio HH again, who is basically my main physio now, and was working on my hips and lower back.

 

The exercises (Since I’m keeping track here)

 

  1. Lie on back, knees bent about a foot apart, feet also about a foot apart. Close eyes. Keeping one leg upright, slowly lower the other leg out sideways, then pick it back up.
  2. Lie on side, ankles together,knees bent at about 90 degrees (as if in a chair) – Slowly pick up top knee, to about six inches off the bottom knee, then lower it back down.
  3. Sit on a balance ball, bouncing slightly (for core strength)
  4. Sit on a balance ball arching and curving back, whilst staying upright – This is also how we found that my left leg is shorter than my right, and I’ve got a functional scoliosis.

On the way out, I ran into Physio T, who seemed both really happy to see me, and also really worried that she’d been meant to see me that day, and had missed me. She was surprised that I’d not been in inpatient rehab in the month in the middle, since our last appointment, but also seems to think that I’ll do well once I’m in it.

 

That’s the other thing – Inpatient rehab; Aka, the fabled Stanmore Programme. There’s two versions of it, the hotel version and the hospital version, and for obvious reasons I’d rather do the hotel version. It’d just be conducted by physios, H was very certain to advise me that there’d be no nurses on-hand, thus no care shift – But then, in the real world, I don’t exactly have nurses on-hand all the time either.

 

The journey home was fine, even if I did have a two hour wait for patient transport, and only got back at 10pm. Nine hours of travelling, two hours of waiting, and an hour of physio. Seems like a great use of time.

 

The trouble is, well, my mental health. It’s not exactly great right now, it’s stable, but it’s stable at a low ebb – Nothing seems worth doing, up to and including things like “getting dressed” or “washing”, and stuff like putting on clothes more complicated than just bike leathers or surplus is so terrifying that I go into paroxysms of anxiety for days. Likewise, any kind of socialising – I’ve seen Best Friend a slack handful of times since we were on holiday, and I’m not really spending time with Dearest either. For my own good, I’m not doing Christmas now, but I almost wish that I could have some kind of in-person social interactions with people without finding it hateful and pointless. Not because I feel like I want to, but because I know that’s what “real people” do, and I really do suffer when I’m feeling more aware of persistently feeling like I’m not real, or not equivalent to a “proper person”. Failing repeated tests on a technicality, failing my degree, ending up in non-standard NHS treatment because my local trust don’t think I’m worth treating, being very socially isolated by a combination of awkwardness, reluctance and circumstance (today I rang up a client, for free, and chatted for an hour because I had nothing better to do), and having a job that relies on being able to be a very good liar/actor/cold-reader, atop a childhood of feeling like a mistake, an exception-to-a-rule, an outsider and an ersatz substitute for being with “real people” makes for a distinct sense of being not-a-real-person. It’s probably no coincidence that I’m happiest and feel most like myself when I’m entirely alone and hard to physically pick out from the next person; ie, either on my bike and in my leathers, or swimming and underwater.

 

It’s not exactly rocket science that I’m plagued with suicidal ideation at the minute either. I’m watching TV and generally numbing myself out with morphine and lacework, but it’s there in my head and I’m having a bit of a shitty time making it stay shut up. Ah well, not long to longest night, and then with any hope, I’ll be on the way up into Spring.

 

 

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Thin Privilege

One thing that really annoys me at the moment is that the HAES movement has managed to effectively elide the difference between “slim” and “skinny”. It’s generally best espoused by the phrase; “Thin shaming is nasty comments, fat shaming is structural oppression”.

 

And it’s bullshit. It’s gaslighting of the absolute worst order.

 

I am a thin person. I don’t like posting photos of myself, but if you dig through this blog long enough, you’ll see photos of me. I’ve been thin for my whole life, a product of being an extremely premature birth, being malnourished to some degree for much of my childhood due to poverty, and due to Ehlers-Danlos which, amongst other things, makes my digestive tract inefficient and kills my appetite and makes food about as likely to come up as it is to pass through.

 

It started in early childhood, where I didn’t put on weight like other children, so there was a constant stream of social workers to the house and the constant assumptions and whispers that I was being abused. By about 6, other children had picked up on it, and I was “skinnyface” – Either getting food smeared on all of my belongings, or having my pack-up stolen and thrown over the school fence because I “didn’t need to eat, [I am] a skeleton”.

 

It continued at secondary school – New city, new people; Single-sex and selective. The pupils immediately picked out that I and two others were unusually thin, so the rumours spread immediately that we all had eating disorders, and we were shunned to varying degrees for that. Again, eating at school was fraught; Having a bar of chocolate would always be accompanied by sicking-sounds from everyone around me (Because of the assumption that I was bulimic), and eating in the dining hall was a nightmare since other students would pour vinegar on my food to “Help my diet!”

 

It only took a couple of months for the staff to join in as well – At PHSE, I was the one in my class who was always held up as an example of “Someone who could use feeding up” or “Someone who OBVIOUSLY put wanting to diet ahead of how they looked” or “Someone who probably has an eating disorder”. The geography teacher found it hilarious that other students had scribbled my name under a picture of an emaciated child in a famine. The history teacher, a few years later, tried to stifle her laughter when the same thing happened with a concentration camp photograph. It didn’t take much to convince the teachers that I was a cruel bully who paraded my thinness in front of the other students to mock them, so they pretty much without exception joined in in pointing out how ugly, freakish and skeletal I looked. Did I mention how confusing it is to always be singled out in lessons about drug use and eating disorders, with the assumption that you’re a heavy drug user, and that you have an eating disorder, when you’re neither? Academically, despite getting good marks and being generally very interested in learning (I still am interested in learning, and improving my skills at various things) I was assume to be stupid and un-teachable and to have no interests other than being thin.

 

Thankfully, sports was a small reprieve – Within my own team, outside of school, I was known to be a fast swimmer and a hard worker, but every new coach had to be persuaded that I wasn’t just there by accident and wasn’t doping. And, honestly, in the changing rooms there were still rude comments and snide remarks, but at least nobody spat in my food.

 

Obviously, in all of this time I’d never had clothes that fit, and going to school in jumpers that hung off me like sacks and tights that wrinkled around my calves made me unfashionable as well. It didn’t matter, my uniform got holes cut in it pretty much every other month by mysterious perpetrators “who were never caught”. One of the ringleaders in my class said that I should be flattered because everyone wanted to see my lovely thin whore body, and everyone laughed.

 

At around 11 or 12, the physical pain started – All of my joints going to pieces. I went to the school nurse first. Her verdict was simple; I needed to stop obsessing over my appearance and eat more. I was stupid, vain, shallow and the literal worst kind of person. I braved going to the GP. He told me that eating a bit more, since “Boys like curves” would help. I still didn’t have an eating disorder, I was still trying my best to put on weight at every turn, to stop the constant taunting and assumptions that I was a bad person. Despite continuing to try to see doctors regularly for both my phsyical health and mental health, it took until I was 26 to be diagnosed with any physical pain-causing problem, and given any pain relief at all, by which point I had basically lost the ability to walk. Because everyone had decided that my only problem was being too thin, go and eat a sandwich.

 

At 16, I started looking for work, and was immediately turned down. Employer after employer told me that, well, a skinny fragile thing like me could never do stand-up work. Bar work? Cashiering? Shelf stacking? All needed someone who looked less “snappable”. This is despite the fact that at the time I was a fairly high-level athlete and hillwalker. No amount of my protestations that really, lifting a tin of beans was not beyond me, would get through to people. At 22, finally, I got a job that I loved, building drystone walls, and was very happy with it. After that, I had a few years of demanding physical work in a teaching lab. All stuff that, when I’d been seen in-person first, it’d been assumed that I couldn’t do. Both of these were jobs I’d got via telephone interviews. I’d always been turned down for non-physical jobs as well, because I “Wasn’t the image that our company wanted to project” – Too unhealthy, probably a drug user, a depressing reminder of poverty.

 

Have I mentioned the street attacks yet? There was a reason that I didn’t go to nightclubs or bars, or really socialise much, and still don’t. Firstly, tht it’s impossible to socialise when every time you go into the toilet, you get someone trying to look over the door because “The famine victim went in there, what do they look like with their knickers down?” or someone tries to rip your hair out to “make you look more holocaust since you’re already halfway there” (By the way, my hair is as thin as it is largely because of scarring in the follicles from multiple people per year thinking that they were the first to make that joke). The thing that stopped me was someone slashing me with a knife, to “See my ribs”. It needed stitches. The police officer that I’d reported it to said “Well, you ARE very thin… They were just curious” Buying food in restuarants or cafes was basically impossible – If I ordered something “too fatty” it’d get spat in or turn up with hair in it, or a cruel note. If I ordered something “too healthy” (which was often the verdict thanks to my cow’s milk allergy) I’d find it spiked with butter or milk that’d make me ill for days.

 

And as for clothing – Yeah, I’ve never been able to just buy clothing that fits. As I sit here, I’m wearing a pair of oversize army surplus cotton trousers which tie with a drawstring, and a silk shirt made for me by my best friend. I’ve never seen someone like me on an advertising board, or a catwalk, or in a TV show (Other than, once in a while, as a heroin addict or a criminal). Clothes are not cut to fit someone with a huge square ribcage and hollow shoulders and a recessed breastbone, and pressure sores on their scapulas and hips and arse and knees from sitting  down with too little padding.

 

In case it’s not obvious – This was not just treatment inflicted by one person. This was not just treatment inflicted by one toxic subculture in one city, or one institiution, or one profession. This is everywhere that I’ve lived, in three countries, five schools, a dozen places of work, everywhere that I’ve ever tried to socialise. I eventually gave up on even the naturist swim – A place where people are famously accepting – because I got too many comments on my grotesque body, and too many people assumed that it meant there was something grotesque about my personality as well. This was, well, structural, systemic; in education, in society, in healthcare, in the workplace and in the media.

 

So the constant gaslighting that “The worst that happens with skinny shaming is being told to eat a sandwich” can frankly go to hell.

We should all wear fantastic red trousers and never be sad again.

This has been one of those downright fabulous week-and-a-bits. My pain levels have been high, I’ve been scraping a knee around the twisty corner of a serious anxiety problem, and I’ve been sleeping like a rat on a tilt-table, but it’s been a fantastic week.

 

I swam at my local baths, again, for the first time since November, and turned out two kilometres without really noticing it.

I went to the City bath, clocked in three 400m stretches at about five minutes each, in a 2.5-kilo total session, and spent so long in the sauna and steam rooms that I felt completely new when I came out.

I went to two sessions of the naturist swim, and was just completely relaxed and sociable.

I’ve been out for a  lazy run on the bike – Not going far, not getting far above 50mph, but doing it on the best of the twisties that my county has to offer, on a gorgeous spring-becoming-summer evening, with every hedgerow in blossom and bursting with fresh greenery. The hawthorn, particularly, is splendid this year, and after this morning’s rain (though the roads have dried nicely) its smell is hanging in the air as thick as steam. I absolutely love this kind of weather – Not too hot, not too dry, and the whole landscape feeling alive. I actually stopped to look at some extremely jolly sheep, and a lovely old piebald cob who was grazing in the wildflower-strewn field next to them. It’s been that kind of day.

My attempts at domesticating the local feral pigeons has resulted in a Flock – Chequer (A massive dark blue chequer who comes to the window five times a day), Blue Bar (A slightly smaller but not by far pale blue bar, who follows Chequer), Red (A small barless ash-red who avoids the other two), Big Red (A bigger, patchy, barred red who might be Red’s mate) and Big Blanc (A very dilute white-headed, crested red bar who only arrived this morning but Chequer keeps trying to chase away). I’ve also got an accidental twenty-kilo bag of racing pigeon feed for them, so that seems to be going down a treat.

And there’s been good news – my letter from Stanmore detailing Dr H’s assessment of me has arrived, and stuff to look forward to – My first ride on the Suzuki 650 is tomorrow.

My dissertation, which has basically been hanging over me like the sword of Damocles, is now just the toothpick of Damocles, since it’s nearly finished and just needs some gentle tidying-up in the form of a justification and some proofreading to be submitted.

Things are all looking up.

 

Find attached: Stanmore’s letter to me, and some cager’s attempt at “wit” that I found stuck under the pillion strap of my saddle today. Still not enough to make this week anything other than beautiful.

 

Stanmorereplyredacted1Stanmorereplyredacted2Stanmorereplyredacted3WIN_20160524_21_23_03_Pro

Bold rats in tight cages.

So, today I was party to my first serious road rage.

 

Back up – Today was my first day out since I went to the Armouries last month with another distinguished zebra of our acquaintance, which was a fucking lovely day, I must say. And also when I found out that my bike is too small to set off the ticket barriers at the car park. And also when I ended up coasting home on zero petrol. And my first time going through one of the many road tunnels in our beloved city (It turns out that they’re not all under motorway restrictions). And I got to meet his bike, which is a fabulous Yamaha L1300 and is bloody enormous.

 

So, that was a couple of weeks ago.

 

First thing this morning, I took the new-old forks for my bike (Product of lighting-fast bidding and a phone call to a breakers’ yard in Potsdam) down to the garage, and booked in my MOT and repairs for the 14th, two days before my driving theory test and my last OU tutorial.

 

I came back cheerfully on a high, and did the garden – Pruned the roses, bay, lavender and willow, pulled up the few remaining stickyweeds, sowed three planters of new shiso, turned offcuts of the plants into hardwood cuttings and either planted them up in pots, straight into the soil, or vased them in wine bottles, then wrapped up some willow withies, two of the best bay cuttings and a slack handful of lavender cuttings, and stuck them in my rucksack to give to A at swimming.

 

Half four rolled around and I got back on the bike, fuelled up, put on my bag and headed off for my swim – My first shot at the naturist swim for about a month, after a couple of bad weeks. On the way, there was a diversion, which turned my usual short route into a one about double the length – Not a problem, I could just nip back down the main road, up through the housing estate, then drop down the other side of the valley and meet up with the road that the baths was on. So off I toddled – Up the hill, into the housing estate. Now, this is not a modern estate – These are narrow, yellow-stone terraces, with schools and churches every few streets, cars double-parked on the road, potholes everywhere – and there’s a twenty mile an hour speed limit.

 

I, being a cautious chap and generally unwilling to accidentally end up in someone’s front garden or running over someone’s cat, slowed to about fifteen miles an hour, stuck it in second gear, and crept along, dodging the potholes, keeping my eye out for the chimney of the baths, and every now and then stopping to let anyone who was behind me get past.

 

There was a red Toyota Yaris behind me. I tucked in to let them pass. they didn’t go. So I kept on going – Stopping at every junction, looking both ways, trying to orient myself, avoiding the huge potholes that could frankly wreck my bike if I dipped into them. The red Yaris kept crawling up my exhaust, far enough that I swear they should have been getting the lube out. I was perturbed, but guessed that they were just young and not a very good driver either, so kept going, kept trying to let them overtake me, kept trying to find my way out of the maze of streets and back to the main road.

 

Not that long later, I got to the main road, and picked up speed, for the few hundred yards that it took to get to the baths, where I pulled in to the side of the road and parked up.

And the red yaris stopped. The driver – a young woman – leant out of her window and shrieked, in a full-on, red-faced, foam-flecked, chronically hateful voice;

 

“YOU CAN’T DRIVE LIKE THAT!”

 

I looked up. She was sitting, shaking with fury, staring at me, with her eyes nearly popping out of her head, hands completely white on the steering wheel. In the passenger seat, her son, who was probably about ten or eleven, looked so embarrassed that he might have been about to combust.

 

“YOU CAN’T DRIVE LIKE THAT, YOU WERE LUCKY I WAS FOLLOWING YOU, WEAVING ALL OVER THE ROAD LIKE THAT AND GOING AT TEN MILES AN HOUR YOU WERE LUCKY I WAS FOLLOWING YOU”.

 

I took off my helmet and leant over.

 

“Sorry,” I said “I was lost, so was trying to work out where I was going. And if I’d hit a pothole, my bike would have skidded and that’d have been worse.”

 

“WE WERE ALL LOST THAT STILL DOESN’T MEAN YOU CAN DRIVE LIKE THAT. I’VE VIDEOED YOU AND I’LL BE SENDING IT TO THE POLICE.”

 

“Oh. All right.”

 

“BECAUSE YOU CAN’T DRIVE LIKE THAT.”

 

“It was a twenty zone, I was doing about fifteen because I was lost. I kept trying to let you pass.”

“YOU WERE LUCKY I WAS FOLLOWING YOU.WE WERE ALL DIVERTED SO WE WERE ALL LOST. I’LL REPORT YOU TO THE POLICE BECAUSE YOU OBVIOUSLY DON’T HAVE A LICENCE”

 

I looked back at my bike, with the massive red “L” for “LEARNER” emblazoned on the front and back, in huge letters.

 

“I passed my basic a few months ago”
“WELL YOU CAN’T DRIVE LIKE THAT ON THE ROADS YOU CAN’T GO ON THE ROADS THE POLICE WILL HAVE YOUR LICENCE YOU’RE LYING YOU DON’T HAVE A LICENCE”

 

By this point, she had a huge queue of traffic behind her. The irony was palpable.

 

“Right, well, legally, the point of the CBT is to let someone drive on the roads, and there’s nothing illegal about deciding that, for your own safety and that of others, you need to go slowly”

 

“YOU NEED MORE LESSONS LOVE YOU’RE GOING TO KILL SOMEONE DRIVING LIKE THAT AND THE POLICE WILL HAVE YOUR LICENCE. I’VE VIDEOED YOU SO THEY WILL THEY’LL HAVE IT.”

 

I shrugged, and tried to start backing away. I wondered how she’d explain using her smartphone whilst she was driving to the police. The car behind her honked its horn, to try to get her to move on.

 

“DON’T YOU JUST TURN AWAY WHEN I’M TALKING TO YOU I’LL GET OUT OF THIS CAR AND I’LL HAVE YOU TOO.”

 

I snapped a bit, internally. Not only was she being an angry, irresponsible, threatening idiot, she was being an angry irresponsible threatening idiot in front of her obviously mortified son. I thought for a second about what kind of example she was setting, offering violence as the answer to being marginally frustrated at someone driving slowly on cramped, unfamiliar roads, and then decided that was not my fucking problem.

 

“Would you fancy getting out of the car, and saying that again?” I said, in the quietest voice that I could be certain she’d hear.

 

I have never seen a window roll up and a car drive off to fast in my life.

 

I sat down on the kerb next to my bike, and started shaking. I don’t like confrontation, I’m not good at confrontation, and I’m especially not good at raised-voices screaming matches when it’s my first time out of the house in ages. Two of the swimmers who had seen the whole thing came over, and helped me lock up, whilst getting me to relay exactly what had happened. A third (a retired policeman), coming out as I was going in, took my bag and bunch of flowers, and squirrelled them away, whilst telling a fourth (fellow biker) to get me a cup of tea.

Meanwhile, I rang 101, and whilst on hold was guided over to a settee where I could sit down.

 

Once through to the 101 handler, he said that calls like this happened all the time – Unfortunately, absent her registration plate, she couldn’t be followed up on, but the handler reassured me that there were just some horrible, angry people in the world, who even if they weren’t caught now would be caught out eventually and get what’s due to them.

 

Half an hour later, after a good long sauna, I was sitting in the pool with a cup of tea in one hand and a plate of biscuits in the other, which improved matters, but I’m still not quite right. Seeing completely unhinged venom from another road user, which as far as I can tell she’d basically decided she was going to unleash the minute that she saw me, was a bit frightening. In retrospect, she’s the kind of person who would probably ram a biker that she didn’t like the look of. I spent much of the swim worrying that she was going to return and tip over my bike whilst I was in the water – thankfully, one of the lifeguards (scooter rider, so fellow biker) kept going out every few minutes to check on the bike for me. But just… Argh. People.

 

I got home fine, anyway, no mishaps other than one wrong turn in the estate which was quickly and easily rectified without a car crawling up my arse.

 

All’s well that ends well?

Violations

Yesterday was shit. Just really, really bad.

Started off with the social workers, which was just awful in its own right. As much as they say that it’s all up to me what happens and things like that, I feel like I’ve been sort of trammelled into things.

The vague plan so far is that I will get a “Direct Payment” into a “Managed bank account” – Meaning that I will not see the money, so I won’t be frustrate and resentful that I’ve “got money” that I’m not allowed to spend on things that’d immediately help me, but only on specific help that other people think that I need.

It was a key point of mine that I resent the sense of people meddling in my affairs and telling me what to do. I know that, logically, the same thing is happening, but if I can ignore it, I won’t give increibly long lectures to anyone else about how it’s patronising to have a fixe budget for my care, but to have someone who is not me deciding that I absolutely need a personal assistant more than, for example, new brake pads, or a bigger light therapy light.

From that, we got to actually deciding what I needed. Broadly speaking, the plan was to have someone arrive at about 9.30 or 10 to wake me up, rearrange the bed into a “sitting up to work” posture, make me a cup of tea and a flask of soup or curry to put by the bed for dinner, then leave again. They’d then come back in the afternoon if needed, to empty the urinal, possibly sort me another snack, and give me a hand doing the normal household chores that I can’t do, like washing dishes or sorting laundry, or possibly on good days to do things like go to the market or set up the workbench for sewing or similar.

They then decided that I would probably need combined funding from the NHS to provide medical care, because the basic stuff that my friends do on a day-to-day basis is apparently so difficult and unusual and viscerally upsetting to the average person that they’ll need a nurse to do it. Even though I know that a nurse’s response would be “Go to A+E”. So I’m getting a nurse that also doesn’t mind washing hair and cooking and cleaning, rather than a gentleman’s gentleman who can also reduce dislocations. Probably.

I don’t want this. I viscerally do not want this level of interference in my being, even as much as I know that on a bad day, it’ll help. I worry that they’ll either decide that what I want is taking the piss, and thus withdraw support, or that they’ll decide that they want to push and insinuate themselves into being there every day, even on days where what I want to do is be out and away. I do not enjoy the company of other people, and I worry that there’ll be an implied contract to be friendly and make small talk, which I am not good at. In total, they were here for over three hours, and it was exhausting and upsetting.

And then yesterday evening I ended up gong out to a new person’s house and, for assorted reasons, having a horrible panic attack that resulted in me riding up to Best Friend’s house at midnight and collapsing onto the settee in his living room and wibbling and making depressed, terrified noises until I was calm enough to get back onto the bike and ride back home. I was still paranoid enough that the taxi that decided to follow me three quarters of the way home, two inches off my back tyre, really put me further on edge. As much as my acceleration was better, I wasn’t willing to break the speed limit, but he was – So he’d shoot up to fifty to catch up, then slow down to thirty again when he was completely filling the mirrors. Considering that I took an insanely convoluted and little-used route, he was definitely doing this for “fun”.

On the other hand, driving across the city in the pitch black, with half the streetlamps out, and barely any traffic, as the ground frosted over and the sky cleared to reveal millions of stars, with the view out over the valley as I got nearer to home… That was nice. That was worth it for the whole rest of the shitty day.

Today I’m in pain. I’ve got a short deadline that I’m not going to make, my tutor hasn’t responded to my email asking for an extension, my legs and shoulders and neck hurt in a way that suggests they’ve been too tense for too long, and I’m just not feeling great at all.

The best of intentions.

Today was overall a win. I went out to the charity shops, which I now plan to do once a week as a leg-stretch and an attempt to do some weight-bearing exercise.

An armful of purchases:

– One big lump of hammer-broken red-brown-orange-purple cullet glass, that’s about the shape and size of a lung, which reminds me of a similar lump of glass which my great-aunt used to keep for luck at the bingo. Hers was green, and we have no idea where it is now, other than that I hope it’s still in the family. I’ll photograph the one that I have, and ask my Mam if she remembers it.
– One silver candlestick, to add to the slightly Victorian feel of my living room and also because candlelight is incredibly relaxing when in pain.
-One crystal ship’s decanter, to add to the collection (or I may yet give it away as a present).
– One massive industrial weaving shuttle, for keeping my medication in – Sadly I couldn’t afford to buy the second one, which had artificial flowers glued into it and was a proper bit of Yorkshire folk art.
– One cheap denim jacket, on which to sew my NABD patches and assorted others.
– One turned brass goblet, which looks like it fits into the category of “Things that someone made whilst working in manufacturing, when they should have been making something else” which is my favourite category of things (Probably because much of my grandparents’ house when I was little was furnished with woodwork and metalwork that my grandfather and great-grandfather had made when they worked in the shipyards)
– One walking stick, with ice crampon.

All for less than about £15 total, and all of which will get good use.

But there was also a disaster – There is always a disaster.

At the hospice shop, just as I was about to leave – And after a lovely twenty-minute conversation about Northern glassworking and history and stuff – one of the staff cornered me.
“Have you had an operation?”
I wasn’t immediately uncomfortable about the question, but her body-language bothered me. She’d cornered me into the shop, between two aisles, so I couldn’t get out or away, or even turn aside.
“Ha,” I said “No, just unlucky.”
99.8 percent of the time, people understand that this means that I don’t want to talk about it.
“Oh, so are you weak then?”
I didn’t answer, I just sort of shrugged noncomittally and tried to step backwards. She stepped forwards, and asked again, a bit louder;
“Are you weak? Is it weakness? Or is it pain? Or do you get tired like?”

I realise now that I should have just said “I don’t want to talk about it”, but it’s very hard to say that when you’re trying to stay polite, and when your mental conversational options are either “The truth, the whole truth and nothing but the truth” or “Fuck you and the goat you rode in on”.

“Dislocations.” I replied, then as her arm came out to pat me on the back, I added “I’m really fragile, I basically can’t be touched.”

So she took this as an invitation to hug me around the shoulders, as tightly as she could.

Both shoulders, one of which was already pretty stressed from holding me upright on the stick, and the other which was already under stress from having a heavy bag dangled off it, concertinaed inwards.

I let out a little scream, and crumpled towards the floor. She tried to pull me up by the arm, as I protested “No, no, please let go of me, I just need to get down to the floor. I’m a bit faint. I’ve got two dislocated shoulders.”

After a long few seconds, I was kneeling on the floor, clutching my useless arms and trying to remember how to inhale, and she was standing over me and apologising profusely.

“You’ve gone all red. I’m really sorry!”

And she really was really, really sorry. She obviously cared, and was worried that she’d hurt me, and was having to come to terms quite fast with the fact that she’d crippled someone who was barely upright in the first place.

I shrugged out of my leather jacket, and started popping my shoulders back into their processes. – Both clavicles were out of place, both glehohumerals were out of place. Nothing too complicated, just painful and taking a while to reset.

“Would you like a cup of tea? Or a hot chocolate? Or water?”

I wanted out, as fast as fucking possible, but I still had things to pay for and still had to get back in one piece.

“A glass of water, actually, that’d be good” I said, to get myself some space.

She went off to get one, and I continued re-setting my shoulders. The other assistant came over, bringing a stool for me to perch on, and said;

“Oh you know, we’re really sorry, she’ll not sleep tonight I bet. She didn’t mean any harm. I mean. She couldn’t have known. Can I help at all?”

I thought for a second, mulling over how she definitely could have known, if she’d listened for a second, and pragmatism overcame pride;

“Can you put a hand on the flat of my back here, and push as hard as you can?”

“Ooh, not too hard…” she said, obviously still knowing my condition better than I do, and gave a feeble press onto my scapula. I pushed back, raised my arm, and cracked my shoulder into place. She flinched a bit, then said “I’ve seen people faint with pain from a dislocation before. You must be very brave.”

I shrugged. I wanted to give my speech about how it’s not brave – How every time you say “You’re so brave!” to someone just for living with a disability, you’re basically saying “How aren’t you in an institution?” or “How aren’t you dead?” She started patting me on the shoulder. Repeated taps with a little circley-rub in the middle, basically the worst possible thing to do to a freshly-dislocated shoulder.

“Please, don’t. Be careful.” I said. She stood up and backed away;

“Ooooh, sorry. You know, it’s just instinct. Hard to not.”

Reallyy? Really person-who-met-me-two-seconds-ago, it’s hard for you to not keep bloody touching me?

The first assistant, the one that had started the whole debacle, came back, just as I said;

“Even my closest friends can’t just touch me without warning. We shake hands, carefully.”

Honestly, I didn’t think that it would have ever been something that I’d need to explain to strangers. I and my friends tend to hug in an extremely gentle, basically-rest-your-head-on-the-other’s-chest-or-shoulder-and-put-a-hand-on-their-waist kind of way, which is both tremendously rare (Why hug someone when it’s probably going to hurt?) and tremendously intimate (Again, if it’s that rare, of course it has emotional value).

She sat down opposite me, as the second assistant went back to the till, and said;

“So, have you been like this since you were a baby, then? It must be very hard.”

I shrugged.

“It’s not as bad as it sounds.”

“But have you always been like this? Since you were a baby?”

I think that the worst part is when people just repeat questions, when you don’t want to answer them. Where there is no reason for them to ask the question, and no reason for them to need to know the answer. Suddenly I wasn’t the interesting person that knew all about the local mills and the Sunderland glassmaking tradition, I was The Cripple. And people talk to The Cripple about Disability.

“It got worse when I was about twenty. But I’m doing fine. Cracking on.”

“So, can they do anything for you?”

That is the question that I wish could be stricken from the vocabulary of anyone. Sorry, you must reach at least Level Fifteen Friendship before you can force me to confront my prognosis of increasing pain and decreasing function until the bottom of the morphine bottle looks like a lovely destination for a really long one-way trip. Do not just casually ask a disabled person “if anything can be done”. The answer might well be “Well, surgery next year, and then I’ll be abled again,”, or it might be “Lots of medication and physio and hard work”, or “Actually I’m dying”.

Think about that one.

I answered, anyway;

“Painkillers, mostly.”

She looked sympathetic.

“It must be terrible.”

“It’s fine.” I insisted.

She patted me on the shoulder, giving it a good hard shake that re-dislocated it, and I doubled over in pain again. She started apologising, again. This time, evidently, it was at least a little bit amusing – After all, this ridiculous, completely unpredictable thing had happened twice now.

I popped the shoulder back into place, and took an enormous swig of morphine. First assistant tried to catch what was on the label.

“Well,” I insisted, standing up, “I’ve got to be off.”

She helped me into my jacket, and I let her, since that would probably give her some sense of absolution, and she held out a hand for me to very carefully shake.

I went on my way. Feeling like shit and in a lot of pain, and wondering why I was more worried that I’d traumatised two shop assistants than about the persistent, twitchy pain in my shoulders.

In better news – I got out on the bike yesterday, for the first time since the last time I went to the garage, and it was… To go to the garage and buy a mudguard. On the other hand, I now HAVE the mudguard, so I can hopefully ride up to the whittling workshop in the woods tomorrow (Delicious alliteration there). And the day before yesterday, Dearest joined the motorcycling fraternity, with his like being delivered next Wednesday. And he’s joined the NABD too. And our year bars for 2016 have arrived. It’s all very exciting. Might be going to my first rally in May as well, if I feel up to camping…

All aboard the Halloween Bullshit-Go-Round

Last year it was Jokers’ Masquerade, this year it’s Grace Dent. Fuck’s sake.

I also seem to be the only person who’s angry about this, so I feel like even more of a headcase than usual.

So, this is the salient chunk of what she wrote;

gracedent

I’m going to have to bite, and be that annoying cry-baby that you’re railing against.

First of all, I’m sorry that you’re terrified of patients escaping from a secure hospital. It might cheer you (or not) to know that you’re still more likely to be murdered, kidnapped or raped by someone that you know than by someone who was involuntarily sectioned. Even if you live next door to a secure unit that regularly loses track of its patients.

Then I’m going to share a “darkest fears” story of my own, which isn’t a hypothetical one. Many years ago I lived alone in a ground-floor flat. I’d been there for about a year, and I was having a period of serious mental ill-health at the time – Psychosis, that led to fairly severe self-harm, and to the brink of a suicide attempt. When I realised that I was about to try to kill myself, I instead phoned 111, who told me to get myself to a safe place and wait for the emergency ambulance. Living in a tiny ground-floor flat, the only safe place where I thought I wouldn’t be able to reach something to harm myself with further was sitting outside.

So I dropped my tools into the sink, opened the front door, and sat on the kerb to wait for an ambulance, in my pyjamas, unlaced boots, no socks, and with a towel over the worst of the bleeding.

The first responder to arrive was a police car, with one officer in it, who first checked that I wasn’t holding a knife, then sat down next to me, applied pressure to the wounds, gave me his gloves to stop my hands from freezing off, and let me cry my eyes out into his hi-vis stab vest.

A few minutes later, the ambulance arrived, and carted me off to the local mental health ward. The treatment I got was quick, appropriate, and frankly I couldn’t fault it.

Days passed, and I was back at home and starting to recover – Nothing ambitious, just about able to make toast and watch TV, and going to bed not long after sunset; this being midwinter, at about five or six in the afternoon, and sleeping for about twelve hours a day.

The first bit of graffiti just said “Skitzo”, and it was in permanent marker on the front door. A couple of days later is was joined by “A psycho lives here” in spray-paint. After that, there were just buckets of paint thrown up the windows. When I ventured out to buy more bread, I was told by the man behind the counter in the corner shop that “Of course they’ll want you to move out, if you’ve cut yourself, it’s not that far in anyone’s eye to imagine you’d attack them.”

Near the end of the week, the problem of the paint-splattery windows was solved by someone putting bricks through all of them. The brick through the bedroom window actually hit me, in bed, and I sat up in time to see that it wasn’t just teenagers, it was someone who lived further up the street. He shouted abuse when he realised I was looking at him, and threatened to come in and “get me”.

As you can probably imagine, sitting in my living room and listening to a neighbour frantically kicking at the front door and rattling the handle, trying to get in, is more terrifying than any halloween costume could possibly convey.

I moved out the next morning, after a sleepless night.

But, honestly, that’s not my darkest fear. My fear is that it’ll happen again, in my new house, which I love and never want to leave. I know it’s been close a few times – I’ve been lucky in that the people that’ve found me wandering around dissassociated, or cut to ribbons, have been very understanding and have always just taken me home safely. That’s luck, not judgment.

But, I hear you ask, what does this have to do with halloween costumes? Well, everything. In the events I relayed, I would always have cut myself, would always have been sectioned, and would always have had a long, boring recovery ahead of me. But my neighbours attacking me, in what they thought was a preemptive strike and defending their community? The only reason that happened was because of the tremendous stigma against the mentally ill, which is fuelled by (amongst other things) horror cliches about asylums and psychopaths and people in hospital gowns with fake blood down the front and manic grins.

I don’t think it’s going to be easy, but in our lifetimes it used to be perfectly acceptable to wear blackface costumes and to suggest that all Black people were either gangsters or warlords, and nowadays that’s the preserve of only a hardcore, openly-racist few. And I don’t think it’s unrealistic to think that within the same amount of time again, we might be able to make it unacceptable to cause this much harm to mentally ill people as well.