About surgery and its scars. [TW]

An audio version of this post is available here.

I read this piece in the Guardian about the psychological scars left in people after being in intensive care, and it has prompted me to write this. Fair warning: this piece is very emotionally raw for me, and is very frank about surgery, and maybe this sentence should be me saying “turn back now, those of a weak disposition”, but actually I’m saying the opposite. Read it. People you know and love are going through stuff like this. If they’re not now, they will at some point. Read it.

I was at school with a boy called Marvin*, who had had the misfortune to be born with hydrocephalus. I didn’t know him well. I can remember, on a little green in front of the school – just outside the gates – while waiting for his parents and corgi to arrive, we had our first and only ever conversation and he told me that he had-had fifteen surgeries. I think we were six, seven. Very much still in “little kid” territory.

It stuck in my mind.

Later in life, when I started to need surgery myself, Marvin rose through the mists of time, that skinny, fair-haired little boy with specs, who had had fifteen surgeries. And without ever knowing he had done it, he conspired with other pressures to shame me into solitude with my own experience.

I daresay he mentioned it – blurted it out almost as the first thing I knew about him – because that experience had been such a formative one. At that age, being in hospital, being ill, being operated upon repeatedly, probably constitutes almost all of one’s sense of identity, and that’s reinforced by the adults in one’s life. It’s the elephant in the room that everyone hangs a garland upon as they enter. There’s no room for other experiences or self definitions: you are the brave little boy. But surgery, hospitals, are traumatic, and we don’t talk about that. We talk about the bravery of children who go through surgery or cancer treatments, but we never acknowledge that it isn’t bravery at all. That they don’t – none of us really – have a choice.

I don’t know how many surgeries I’ve had, but I know I don’t really talk about it. Sure, I mention it if it comes up, usually jovially: yeah, I had to go and have everything rebuilt at one point ha ha ha. I’m like the Bionic Woman. But that it was an experience whose trauma built up in me is something I don’t say.

I know my first surgery, intended to treat severe endometriosis, was a D&C. They scrape the lining of your uterus away, and hope it grows back right. It’s not major – an overnight stay, maybe. I woke up covered in my own blood. The hospital bed was full of it. It had been there for long enough that it had oxidised brown and smelt like old blood, not fresh. That weird, high, sticky smell that still makes me gag. I was alone. I got up and went into the adjoining toilet, washed myself. Put my own nightdress on instead of the gown. Stuffed a wad of toilet roll against my vag. Rang the bell. Sat in a chair while they changed the bed. I was calm as Buddha.

And that was supposed to be that. But it came back.

The second, the third were similar, but not so bloody. Laparoscopies, lasering endo off various internal organs, and D&Cs became normal. My abdomen is covered in tiny little scars from it. But it came back.

In the meantime I was living with endometriosis. It was not merely a question of heavy periods. It was constant. I never knew how badly I would bleed or when. I did not want to go out because going out meant wearing layers of protection in case I suddenly had a heavy bleed. And your vagina gets very very sore when you have to wear tampons or pads every day. And checking “am I bleeding?” every hour because with the biggest tampon and the biggest pad in the world on, you still only have an hour if it kicks off, puts a real dent in your night out. When it does kick off and you have 15 minutes before you’re in so much pain you can’t speak, it doesn’t dispose you to want to go far from home. My handbag rattled with Neurofen. I took eight a day, on a good day. On bad days I took whatever. It made no dent in the pain on bad days.

I went out to lunch with some friends from work one day and as we sat in the pub eating our chips it kicked in and that was the first time I had seen other people react to it. Apparently I went pale blue and sweaty and my hair went limp. I couldn’t walk, I couldn’t even sit. They drove me home. Seeing them see me go through it somehow made it more valid. I got quite a lot of grief for not coming back from lunch, from work.

I pushed for a hysterectomy. Hard. I didn’t have a life. I wanted a life. I didn’t want children and I knew my own mind on that topic. This was how I might get a life. My GP was an utter cunt. She wrote me a letter denying me a second opinion. She tried to force tranquillisers on me. She did not believe what I was experiencing. Short of dumping a bag of bloody linen on her desk, there was no way I could prove it. She refused to examine me (she had only done so once, a year before). She eventually referred me to the hospital gynae with a letter all but stating that this was mere neurosis and to give me a once over and send me on my way. I sued her.

At the time I didn’t know it was that painful because it was eating through me. Or that I had a hole in the back of my vagina. And because she didn’t examine me and because her letter meant I got examined by a newbie student gynaecologist – an encounter that from start to finish was over in four minutes – they didn’t spot it either. I sued them, too. I won.

This was traumatic.

I paid privately for a hysterectomy. It took place in August of 1995. I was 25. I had to beg my husband to be there. He didn’t want to be. He cited pressure of work, but with hindsight I don’t think that was the issue. He needed a wife with a uterus attached. Or perhaps I mean a uterus with a wife attached, I don’t know. At any rate that surgery ended my marriage. After it, he moved to the spare room and never came back, and all the thousand small gestures of goodwill, the little moments of connection upon which a marriage is predicated, stopped.

This was traumatic.

But as surgeries go, that was a lovely one. My consultant was a peach of a man, gentle, reassuring, humane. Tons of temazipam before I went in, so I slept and cackled my way through the cannula insertion. I woke up with the shakes. Went back to sleep again. Woke up, still shaking so hard it seemed my bed would walk across the room. I looked at the clock. Surely I must need a wee? I called a nurse to help me stand up, not realising I’d had an epidural. I faceplanted the nurse. We laughed. I went into the little loo (you can walk with an epidural, you just have to lock your knees), and … and bizarrely, having just had abdominal surgery, I washed my hair in the sink. That night I remember a nurse coming in, in the dark, perfunctorily flipping me over, and jabbing the most extraordinarily painful needle into my buttock. It was morphine. I was asleep before I got to the “w” of “ow”.

It was August-hot, my goodness it was so hot. I had long compression stockings on and complained to the lady who came to clean my room the next morning. She told me the heat was making her prosthetic breast slide around like mad. Hello, sense of proportion. Maybe the compression stockings weren’t so bad after all. They took the stitches out, which I had been pretty scared about, but it was painless. “You’ll be in for five days”, they said. I was in for three. “You’ll be laid up for six weeks,” they said. I think I redecorated the living room on week five, although the first two weeks post-surgery, were punctuated by my regularly falling asleep instantly, like a toddler.

And it was all ok. Because this was the end of it.

I had my life back, and all the ghastliness and stress of the surgeries now seemed something in the past, and because it was over I was at peace with it. My new GP asked me whether I had children every time I visited him. Every time, I responded that I had had a hysterectomy and never wanted children, and he would say “you are brave, but I can see the sadness behind your eyes.” I didn’t go very often.

And then, in 1997, shortly after the deaths of my grandmother and grandfather, who had brought me up (it wasn’t a good year), it came back. I was bleeding again. I went to the Portland. The good gynaecologist there examined me and went pale. He had found the hole, tucked away in some long ignored corner of me. He thought it was cancer and told me we needed a soft tissue expert, that he could not do this surgery.

This was traumatic. And painful.

So we booked me in for an exam with Lindsay MacMillan – oh, what a lovely man, now sadly passed on – and he was scheduled to do the surgery. We did not know how bad things were, but we knew that the top back of my vagina was destroyed and that my bowel was also damaged, both needed profound reconstruction. It was likely, aged 27, that I would come out of this surgery with a colostomy bag. We didn’t know if it was cancer.

This was traumatic.

I was very, very scared. I booked myself on holiday, just me – because although I was still married I was in fact entirely alone – I flew off two weeks before the surgery, to take my mind off it. It was my first trip abroad alone and my first trip to the States. I went to San Francisco. I knew some people there, but they didn’t turn out to be gentle. In Fresno I was held at gunpoint for I don’t know how long in a man’s living room. At one point he took me down to his cellar, soundproofed, via a wooden trapdoor fitted in the floor of his garage. He had to move his RV to open it. I told him to get on with it and shoot me, but he didn’t. I could say more, but I’m not writing about that, today.

I came home. I didn’t tell anyone. There was no-one to tell. That was traumatic. And then a few days later I went in for this surgery.

The same routine again: shaking, waking, not knowing this time what was left of me. The nurses would not tell me. I was unable to determine it for myself because I had all sorts of drains and tubes coming out of me, which I had not had before. Having them sticking out of me was scary. Having them removed was scary. I remember the nurse warned me it would hurt. I turned my head and looked out of a window. On not the next rooftop but the one beyond, a man was working just in jeans, in the sunshine. She pulled the drain and it didn’t hurt, it tickled my insides (I think my idea of “hurts” bore no relation to the normal idea of “hurts” by that stage) and I laughed my head off. She said she’d never known anyone laugh before.

MacMillan came the next morning and it hadn’t been cancer, and I didn’t have a bag, which was good. But the surgery, even by his standards, had been so demanding that he had stuck a video camera inside me and filmed it. He was rather excited about this. I was less so. But glad to mostly be in one piece (and I kept my cervix, yaaay!). Apparently the endometriosis was undeniably still in my body cavity. He had lasered off what he could and a ton of adhesions from all my previous surgeries, but you can’t get it all, and the presence of oestrogen keeps it going. It was quite possible that it would continue to eat through me. I went home. Within 24 hours I had a fever. I was readmitted to the Portland in the dead of night and the doctor on duty there had to borrow a huge torch from the janitor to examine me. He used a speculum.

You really don’t know terror – proper fucking terror – until you’ve just had your vagina surgically reconstructed yesterday and someone with a janitor’s torch and a speculum comes to examine you.

I didn’t go back for my check-up. I removed my stitches myself, a few days later.

At this time my legal case against my old GP and the hospital was still ongoing and I ended up – again without my husband – watching the film of that surgery as part of the case. It is an unusual experience, watching someone burn your ovaries with a laser from inside your own abdomen, or seeing someone stick a finger through the holes in your body that should not exist. My poor lawyer went quite a strange colour. I didn’t really have a reaction to it until I was on the tube on the way home afterwards, when I suddenly and quite silently and without actually feeling any kind of emotion, cried. It was quick. Cry: end cry. Like a procedure called in a programme, used, stopped.

I got divorced. I found someone new. And healthwise things were ok – for a given value of – after that, until my sister’s wedding, when I suddenly projectile vomited and couldn’t stop. I’d had a very sticky-out tummy for a while, and knew something wasn’t right, but by now I was so terrified of going to an NHS GP – who wouldn’t listen to me – or to a hospital, who likely wouldn’t examine me properly – or to a private gynae, who (and this is worse) WOULD, that I just tried to ignore it. It’ll pass. It got worse. And then this happened. I honestly don’t remember who I went to this time. Maybe the Portland again. And there was something the size of a seven month pregnancy in me. And they thought it was cervical cancer. And I couldn’t get an NHS surgeon to see me. For weeks I was on the phone trying to get someone to see me. Because the initial appointment was private this was hard. My GP was not helpful. In fact I had the distinct impression I was naughty, inconvenient for having gone straight to a private gyn I knew and trusted, rather than going to someone who wouldn’t listen and had no clue of my history.

This was traumatic.

I have a very clear memory of spending a lot of time on phone calls – each one short – and of one afternoon sitting at my desk in my office with my head, my face in my hands and crying. It was the first and only time I ever cried at work. But this was despair, because here I was with this huge wtf in me, and … I just couldn’t get any help. Eventually I did. I had surgery at King’s College up near Euston – not the lovely new one, the really scabby old one. I lost my ovaries, but it wasn’t cancer, again. The cannula hurt like fuck. The fragmin shots left me covered in bruises. I was on a normal, open ward and this alone made me want to die. On my release day, the nurses turned up with a big bag of birth control pills. “I’ve just had my ovaries removed,” I said, “and they took my uterus eight years ago.” No, I had to take these, apparently. Why? Because I needed the oestrogen. “I can’t take it,” I said. I’ve got endo, that’s why I keep coming back. The oestrogen keeps it alive.” They hadn’t a fricking clue what they were doing. I came home without anything.

I was referred to see an endocrinologist to help me with the whole “suddenly not having any ovaries” thing. I told him I wasn’t taking oestrogen, and why. He told me that without oestrogen I would suffer terrible depression (really? At that point how would I know?), that my skin would thin and wrinkle and I would be old and unattractive. That I would have no libido. That my vagina would dry out and be useless.

And that my bones would crumble, but that was totally secondary to the whole “becoming ugly and unfuckable” thing.

But I couldn’t take oestrogen. Because if I had to go through another one of these “Oh you’ve got cancer! Oh no wait, you haven’t got cancer” things I was going to hang myself just to make it stop. So I didn’t take oestrogen. And I didn’t go back to that endocrinologist.

Cue two years of actual hell. I can’t describe it. It was like being inside a washing machine, if washing machines’ boil cycles also included a panic mode. And then my body adjusted. I am not wrinkly. My vagina didn’t dry out and disappear. I have a ferocious libido. Never believe people when they say these things. Never be afraid of being ugly or unwanted.

Midway through 2012 I had something else go wrong. I ignored it for as long as I could, but eventually I had to go back to my GP and say “again with the vagina” and I gritted my teeth and let her examine me, and she got the hospital to send me an appointment. And I moved that appointment back. I moved it back. I kept moving it back. My GP gave me shit for it. I explained that I find examinations incredibly traumatic. She responded by saying I needed to take responsibility for myself and that in future she would refuse to refer me for anything else.

I moved it back every month for a year. And then eventually – I don’t know why, but eventually one day I was capable of keeping the appointment, so I went. I sat in the waiting area (thankfully alone) feeling dizzy and sick. When I finally got called in by a really lovely registrar – my goodness, she was so kind – I sat down, burst into tears and said “I’m sorry but I can’t let you examine me.” And she said it’s ok. Sometimes this happens. We’ll book you in and do everything under a general anaesthetic. “We book women in for smear tests under a general,” she said. And the relief was so great. Not that I didn’t have to be examined, but that this was normal, that there were procedures for this, that other women felt the same, that at last, for the first time, someone medical had heard of the experience I was having and considered it valid.

The surgery was ok. It wasn’t really ok. When they tried to put the cannula in, all my veins hid. They bent two needles scraping them about in my hands. It hurt. A lot, actually. There was no premed. As usual I woke and just felt relieved it was done, just wanted to escape. And I went home and didn’t think about it any more, although peculiarly this fairly minor surgery was the most painful to heal.

None of this, individually, is a big deal on paper. Yet cumulatively I think this last surgery may have represented the final straw that’s broken the back of my capacity to let people near me. It’s not even the surgery. It’s my GPs attitude. It’s the assistant anaesthetist holding a needle bent like a fishhook up in front of my face, “Look!” It’s the fact that for every kind and competent consultant surgeon or anaesthetist or registrar, there are people who would give a woman who has just lost her ovaries, birth control pills (imagine the raw agony of that if you had been a woman who wanted children), or who tell you off for being terrified, who don’t listen, who deny you access to basic medical care out of sheer ego, who deny you access to basic medical care because they think it’s impossible to have mental health issues AND a broken body, who prioritise your future sexual availability over your future skeletal integrity.

We have a problem with the way we treat people. We have a problem with the way we view and speak about surgery and medical intervention. We aren’t being honest when we call a child or a cancer patient “brave” and in the same sentence do not admit that we are failing that child or that cancer patient – we are placing an even greater burden on them – by requiring “bravery” of them. Let’s have less bravery. Let’s have more honesty, and let’s have the drugs that make these often very traumatic experiences bearable, painless, made available for people across the board – not just dependent on your having a sympathetic GP, a creature I’m personally convinced is mythical.

This is what we don’t talk about when we talk about surgery. That people you don’t know touch you. They mean well (sometimes) but they hurt you. Your bodily autonomy is removed from you in a way that we generally only experience as adults if we’re being sexually assaulted. And a lot of women HAVE been sexually assaulted and so they find this difficult experience far more difficult. But we don’t discuss this. And we don’t discuss gynaecological surgery or the often dreadful traumas and damage experienced by women in childbirth because that’s a bit distasteful. And we don’t discuss how the trauma of medical procedures affects our relationships with the people around us, how it’s not necessarily this great bonding experience where people rally ’round and help you. Quite often you keep things to yourself because you don’t want to distress children or older family members, or because if you DO tell them the truth you will end up having to cope with their stress reaction, and that will take priority over coping with your OWN. Sometimes it ends your marriage. Ultimately you are an animal, an emotional being more than a rational one, going through a traumatic physical experience. It is likely to affect you beyond your visible scars. You’re likely to need more support than a surgical stocking afterwards.

If we treat medical intervention solely as a logical process, a necessity that we must all cope with in some sort of post-Victorian-brutalist denial, traumatic or repeated experience of it can change you, and your idea of who you are, and the ways in which you relate to others.

“Hello I had fifteen surgeries. And my name’s Marvin.”

In that order.

*Not real name.

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The year of good magic.

An audio version of this post is available here.

People do year round-ups, and I have tried to in the past, but if I’m honest it has been an unsatisfying exercise because in 44 years of flapping about on life’s metaphorical beach, I have yet to have had a year which I wanted to look back on. That’s not to say I haven’t had amazing things happen in my life, or that I have never been delighted, or that I have not been surrounded by people I adore. But always, in the middle of this loveliness, I have been a large fish struggling on the sand, I have been stuck in a world I am not part of.

Well, the first thing I have to say to you is: never stop struggling. Never stop. Because I’ve finally got somewhere.

It is hard to explain in an orderly way what made this year different from every year that preceded it. Certainly not my health, which has remained appalling: more so in the last 2 years than before. I am largely housebound, though I try to foray out a couple of times a week just for a walk about, and I quite often take a turn around the block late at night just for a look at the sky. I am absurdly fat, and I say that not in a fattist, scorny sort of way, but because it makes my every day worse, harder – I simply have more to lift on muscles which were ill equipped to lift me when I was half the woman I am today. This is almost impossible to address, as I cannot exercise. Nonetheless I will address it. I will find a way, because if I go on like this my heart will pack in and that’s all there is to it, and I have too many things I need to do to let that be.

I have a good few days every now and then and as soon as I do it’s off to the allotment with me. It is surprising how much can be achieved in one good hour every couple of weeks. I’ve put in an embryonic hedge and a tiny orchard, which looks like a bundle of twigs at the moment, but put your hand on it and it’s got that cold, dense feeling a sleeping plant has. My allotment is exactly as perfect as I would like it to be. The amount of pleasure I get from dicking about with pieces of string and lengths of cane doing things like this is unfathomable:

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(You are looking at the perfectly-aligned slate ends of my formal beds. Ignore the weeds and chaos around them.)

So one of the ingredients that has changed my life is definitely the allotment. It is a different thing from a garden, and the picture above shows why: an allotment is allowed to not be perfect. An allotment is allowed to be muddy, to have bits you haven’t got round to yet, to be a work in progress that is constantly changing. I got this allotment from someone by an act of the most peculiar magic, (it was brought to me by bats), and I never go there but that I think this, and thank the bats – now gone, job done – and my friend for giving me such work to do.

2013 did not start well. By the end of January I had been badly hurt. I was angry and had nowhere to put it. So I battened down my hatches and just tried to survive. I didn’t do a brilliant job, and by the spring (a late and muddy spring that just wouldn’t come), I made the decision that I must try to address the depression I was suffering. So I went to my doctor and said, in as frank a way possible, that I was living with what they call “suicidal ideation” and that it was pretty unbearable and I needed some help. My doctor proceeded to medicate me for “a low mood”. Which I now find incredibly funny. I had never asked for medication before to control depression, so this was a very big step for me, both in terms of the outcome (having some help), but more so for the process (asking for it, allowing it). I am not someone who says “please” easily. I am still not.

Anyway, the medication – Citalopram – was a strange thing. I had 12 days where I was in an incredibly dangerous state, lower than a ferret’s nutsack and possessed of a furious energy that turned inwards, all teeth and knives. Fortunately (?) I am accustomed to dealing with myself. I waited. The storm passed. I found myself feeling calm, alright. It was nice. I had a month of that before it became impossible to stay awake for more than three hours in a row. I slept all the time. What’s more, the depression came back, so now instead of being awake and depressed, I was mostly-asleep and depressed. I had even less of a life than before, so I decided to stop taking the pills. I did so in a sensible way, following my doctor’s advice, I decreased the dose slowly, stopped, and then …

and then I felt ok.

And I carried on feeling ok. The shouty voice that habitually listed my faults and failings for me before I woke each day was gone. My tendency to see only my own lacks and judge myself against that stain was gone. My tendency to think of myself in abusive terms was gone. The whole fucking lot, the whole hellish tangle: gone.

“Alright,” I thought. “This is a nice little holiday. I shall enjoy it while it persists.”

Reader, it persists.

Being me, I put what I thought of as “my holiday” to good use: my book was brought out, dusted off, and I carried on editing it when my body allowed. I bought some big canvases, and since I can no longer hold a watercolour brush without my hand going into spasm, I decided to do some nice big acrylics, something not as small and fiddly as the watercolours, but freer, more abstract. Damn, painting HURTS. But I’m pleased with the results.

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20″ sq acrylic on canvas “Woods.”

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33″ sq acrylic on canvas “Speed of life.”

And suddenly I stopped thinking of my home as a place I was going to sell shortly. Suddenly I realised that it’s my home. That it isn’t a holding pen. It’s for me. And I painted a big cherry tree over my bed.

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It’s the first thing I see when I wake up. And I guess it’s pretty, but it isn’t really about that, it’s more about the fact that I did it, the act of doing it. It’s more about me giving myself permission to have a home, and the roots of that – of being homeless, the outsider status of that, the fear of it – run so deep, that this – painting this tree over my bed – is probably the deepest piece of magic I have ever wrought.

THEN what?

I started listening to Tara Brach’s talks on the recommendation of a friend. Tara is an advocate of mindful meditation, which is a thing I’m sort of gently interested in. I put her first talk on when I went to bed. And I slept like an angel, but I had only heard the first 5 minutes of her talk, so I tried it again the next night. I like her: she speaks of a thing I was starting to get the hang of anyway. Showing yourself a bit of mercy. Not investing yourself in the day’s dramas and defeats, but observing and feeling them in perspective, as part of the whole picture. I have never heard more than five minutes of one of Brach’s talks. But they seep into me at night, and the new approach I was already bringing to life’s sometimes-trying vicissitudes found itself shored up.

This brings us to the end of the year, when suddenly all this – everything preceding this paragraph – came together and stood up. On 23rd December, I finished editing my book and I sent it off. This thing that I had worked on and put by through the most difficult part of my life. I did not want to drink champagne and run naked into the sea. The point was not that it was finished, but that I had sent it off. That I had said “this thing, made of me: it is good enough.” I’m not implying that it’s perfect or great or anything like that. That’s not what I’m saying. I’m saying I think it’s good.

That I think I’m good.

There was one vital door I had shut. It bothered me every day, every night for the year. I did not have a day in which I did not stand behind it and look at it and long for it to be open. It was a door like a heart valve, one that had not worked properly for many years, but that let in as many ghosts as bright living beasts. It was chocked neither open nor closed but halfway, so that I could not love cleanly, awash in old blood that never drained. I had spent years trying to pull it fully open. And in January I closed it. That is a very brutal thing to do. In the moment I finished the book, I opened that door, as if doing that was part of the process of finishing the book. I can’t explain this well to you, but it was a seamless and logical extension of that whole venture: opening that door was the point of it all. All the old mess had gone. All of it. The door opened on a bright garden.

I did not expect grace on the other side of that door. I did not expect to be remembered, I did not expect to be welcome. Thank you.

If 2013 was the Year of Agency, 2014 is going to be the Year of the Agent: I have to get representation for the book, work up a portfolio of paintings and find local representation for those, and there’s a second book (already a work in progress), which I know will not take as long as the first, because the problem with writing the first book was never writing the first book.

The fish flapping on the beach has grown some legs and found a pair of sunglasses and the ice cream van. I have a life. I’ve never had one before. Not in this world. Anything could happen now.

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Year-End Twitter Recommendations.

An audio version of this post is available here.

If I follow you I like reading you and enjoy engaging with you.

I don’t hate-follow anyone. I don’t follow people I don’t like out of politeness, either.

Some of you are my rl best friends, and I love you, I love you madly.

And you! You there! Yeah, you. I want to eat YOU.

So if you’re looking for people to #ff, my timeline is full of them. I recommend them all.

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The process of long division.

An audio version of this post is available here.

My mental image of what it feels like to finish writing a book – don’t laugh, I can’t help it – is lifted from Romancing the Stone, where the lead character finishes writing her swashbuckling romance and swigs on a miniature booze.

I finished my book last night. Properly finished it. It doesn’t feel like I thought it would feel. I thought I would feel nervous about its future, jubilant, probably sad to be letting it go. I don’t feel those things. What I’ve got is an enormous sense of calm and stillness, and freshness. The only thing I can liken it to is stepping off an aeroplane into some warm and fragrant country at dawn, when it’s all still cool and a little grey, and you don’t know what’s to come, but you know it’s good.

I’m really pleased it’s done. I’m really pleased with it. It feels right. And what’s eerie is how all the mess it came from, all that before-the-book-was-started life, is now weightless. I am not carrying it any more. I’ve put it all in there. Not literally in the book (cor, imagine the law suits), but into the process of feeling it, writing it, and most importantly (and this is why it took so long, this is why no other book will ever take me so long), into the process of FINISHING it and letting it go.

Something twisted and important has left me, of late. Barbed wire stuck in me has grown out. This didn’t happen instantly, it wasn’t like “Eau! I finished the book and wow, I am a new person!” – which would be cheap and false. It was more a drawn out process of looking at the hurting things I held clutched to me, of identifying them and how they came to be, and what they meant to me, why I kept them, and dropping them, not as events in the past (they will always be that), but as parts of my self. I had hung onto those things all my life, and made a hobby of collecting new ones, in the hope that repeating the same wounds would allow me to understand and heal the first one. (We all do this.) The looking has taken me years. It could not have been quicker. The dropping process has just taken one year. This year. 2013 was the year of ends.

I am no longer a remainder in the process of long division, not outside the order of things. I have a place in it. It has a space for me. That’s an amazing feeling, if you’ve never felt it.

And somehow, it doesn’t call for booze, or anything. It is a celebration, every minute of it. The life I make for myself now, after this, is the celebration.

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Miss Chiller’s feeling for snow.

An audio version of this post is available here.

- I love the smell before it arrives, like the taste of dead water in a glass: not stale water, but left until it is deoxygenated, that taste, flat and clean and dead, is how the air smells before the snow comes.

- I love that first second when you notice it’s snowing. And whatever your age, you have to go to the window to look for a bit. You have to make your wise pronouncements, even if only inside your own head, as to whether it looks as if it will settle. And whether the ground is cold and dry enough to permit this. The answer is almost always (with the first snow of the year) “No, it isn’t, and no, it won’t.” But you look up at the dark grey flakes against the pale sky, and then down to the pale flakes disappearing on contact with the vivid grass. And you say “well, maybe if it comes down hard enough …”

- I love the different kinds. Tiny dry snow on very cold days that makes drifts like sand that roll and scamper down themselves. Great fat Lego building blocks on warmer, wetter days that stick to one another and form satisfying overhangs (but will quickly flatten out and disappear). Horizontal, eyeliner destroying snow. Miserable, overweight, wet snow, falling straight down. The foofy stuff that doesn’t really fall down, it sort of meanders about and eventually settles for you in a way that does not feel entirely complimentary or committed.

- The sound of normal English snow when trodden upon: MONCH and CRUMP. And then, if you’re lucky and if you go slowly, each step gives under you in a little series of statements about your weight and foot size: MONCH… MONCH CRUMP … MOMP. The creak as you move your weight from one side of your foot to another.

- Being in woods in the snow, proper snow, heavy heavy snow, a long way from anyone else, in the kind of woods that has bears (but they’re asleep ha ha ha – who cares about the bears?). At night. On a clear night, when the moon is up, and the whole world is bright, as bright as day. You could read by it. That silence.

- All the people who turn into pink cheeked muppets when it snows. Yes. You are my sisters and brothers.

- Making things like this, alone in my back garden.

My Snownosaur

- I like the taste of it. It tastes like the flattest deadest glass of water anyone ever poured. Also it is very good for making cocktails with, providing all your other ingredients and the glass are at zero.

- Going for a walk in London at night when it’s snowing heavily and all the tawdry grey of the place is replaced by a glittering coat. And there isn’t anyone about. And if there suddenly is, they are very likely to smile at you because IT HAS SNOWED.

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Fearless

An audio version of this post is available here.

The back of my neck feels as though someone is standing on it, in army boots. Standing on one foot, with all their weight. When it feels like this I often wake in the middle of the night (or indeed the middle of the afternoon), from a dream where someone was trying to break my neck by bending my head forward with brute force.

You know you’re “fatigued” (as the NHS calls it) when, finally, your brain stops accurately processing sensory input and just goes “fuck it” and starts throwing any old crap it can find at you, presenting sensory fiction indistinguishable from sensory fact. In short: it is not uncommon to hallucinate if you have ME/CFS. A shape appears on the edge of your vision, neither threatening nor friendly unless you interpret it so. Merely a shape, dark on the very edge of the doorway until you look. Standing just behind/beside you, until you look. Being me, I interpret this as a loved one I cannot quite see, but believe me, it’s a deliberate interpretation. One wouldn’t want to let the reins slip on that one.

And then olfactory myths: the scent of wet earth, the scent of almonds, the scent of a bonfire, incense, a bonfire, earth. Most are delightful experiences, but the bonfire hallucination needs checking. I go around the plug sockets in that room. Check everything attached to them, use my hands, eyes, nose to spread the risk of one sense not reporting accurately. Nothing is smouldering. Nothing is even warm. I set an alarm on my phone to check again in 15 minutes (without an alarm I will not reliably remember to: I may well fall asleep). After that second check, I will mentally chalk “persistent smell of bonfire” onto the list of today’s brain wonks and ignore it.

Having hallucinations isn’t the same thing as being crazy. I know they’re hallucinations. At no point do I think they’re anything else. I’m quite rational. It’s just my brain is firing randomly, throwing interpretations at me that I can see are fictional, most of which (even the bonfire, maybe especially the bonfire), are beautiful because I’m more wired for beauty than fear. But I can see, if I were one step to the left, one more possible reason suicide is such a popular hobby among the sufferers of ME/CFS. My hallucinations are not frightening. And I am intelligent enough to not believe my own eyes, ears, nose, or skin. Again, I am lucky.

Things could go either way. Either two days from now I will spring forth like some infuriating fat Athena from the brow of Zeus, paintbrush in hand, feeling tons better. Or by this time next week I’ll be too ill to eat and it’s back on juicing vegetables again and at least 2mo completely housebound.

There is one curious benefit to all this, and it is a very hard one to articulate*: when your system is so exhausted that it stops distinguishing between what’s in your subconscious and what’s happening (and indeed, that issue stops mattering to you, provided you check the house isn’t on fire), one’s experience of the world becomes a poem. There are assonances, rhymes, metaphors. One’s thoughts scan, repeat, trip-fall-flop down the side of Normal Behaviour’s steep mountain, roll into the River WTF at its toes, are carried off, become fish, reach the sea, hunt, spawn, shoal, shhhh. You do the things you wanted to do, feel the things you wanted to feel if rationality did not sit like a boulder in the cave mouth.

You tell people things about yourself.

You become fearless.

* Srsly, try telling your GP this.

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The disturbing discovery that the world is shrinking.

When I remove my new specs – which I must do every time I change from looking at something within arm’s reach to looking at something further off – I notice a very obvious effect. The world gets a great deal smaller.

Long-sight is something that happens to us with old age, as the elasticity of our lens reduces. It’s quite natural. It happens to us all, leaving us gurning at the small print on food labels in the supermarket, head cocked back and to one side, the mysterious jar held as far from our face as we can get it. The gurning isn’t optional. It somehow goes with the territory, as if society demands that we flag up our disabilities for others, and the internationally accepted sign of poor eyesight is the gurn.

Small world. Big world. Small world.

And yet before I had glasses, I was unaware of the world having shrunk. It seemed a perfectly normal size to me, but since I have received the gift of reality from Specsavers, I marvel at how much smaller the world is now than it was when I was a child. It’s tiny. I can prove it.

Look at Wagon Wheels. Go back and look at your primary school assembly hall. Hyde Park used to be colossal, but these days you can fire a Strepsil clean across it if you sneeze unexpectedly.

Things are shrinking fast. It’s a fact.

I pondered the scientific roots of this phenomenon. Astronomy and physics tell us that the universe is flying apart. The red shift, all that stuff – it proves the speed and direction of objects in the universe. It tells us that things are, unquestionably, getting further away from one another. Clearly that is also what happens to humans. As we age, our souls and reality fly further and further apart. Behind the lenses of our eyes, each person is flying away from reality at an astonishing speed. And so the world looks smaller and smaller in our short span of years.

Eventually we will merely be bright dots to one another. At that point, even the really big jars of Marmite will look small. And I suppose that what we call “dying” is when someone stops peering through their eye lenses, and wanders off to find something bigger to look at.

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