What’s it like / it’s like (when the words come home)

An audio version of this post is available here.

It’s like … (and I wrote about this before, because I know this landscape so much better than I know the landscape my eyes look at every day, the landscape that is as strange and as empty of comfort to me as a zoo is to a tiger) it is like

You are in the woods, standing still in thick fur boots, in snow up to your shins, and next to you is the horse, which is always there next or under you, quietly breathing. It is night, clear and luminous and your hands are so cold they ache and the snow has finally sunk through the oiled pelts your riding boots were made of because you’ve been damn fool enough to get off the horse and let it rest a while. Its shoulder is so warm under your hand it’s almost like a noise it’s like

In the bright dark there is a dark dark spot. Among the world that reaches up, thinner and thinner until the end of each branch finds a star, there is something squat and geometric. You knew it was around here, but you haven’t been here and there is no map. Yet there it is, a little cabin, it is like

You asked for help and the trees twisted themselves into this shape to shelter you, it is like

There is no lock on the door, you open it and you and the horse go in together, because that is how it works here. The place is small because that’s easier to heat. There is a stove, cold, you find it in the dark and pull the old ashes out with your hands, onto your knees, the floor, feel for the new wood, curl shavings off with your knife, then the tinder and oily wool, the spark, a flame, then the dark and your breath softly on it, so softly in that little wait where you think you’ve failed. But you haven’t. There is fire now.

It is like that. The words go away sometimes for years. Wait. WAIT STILL. When they come back the trees and snow come with them, a whole world comes with the words.

It is like that, when the words come home.

Posted in Uncategorized | Leave a comment

TW suicide and depression and all that jazz.

An audio version of this post is available here.

You can’t write about anyone else’s experience of depression, only your own. I got off twitter as soon as the S-word started being bandied about, in connection with Robin Williams. I don’t like being around it. It gives me the heebies. Not in the “I’m a well person and it makes me feel a bit OMG-AWKS” way, but in the “I’ve lost too many friends to this, and lived with it” way. Depression is fluff on the needle. It is the needle bouncing back into the same half-bar of the same song again and again and again and again and again and again and again and again. It is a thought virus your immune system cannot shake. It is the ultimate TSR programme, idling away, idling away your hours, days, weeks, months, years, relationships, life. It is a stain that bleeds through everything you lay over it. It is the black hole into which everything is dragged, it sucks the reassuring words from the mouths of people saying them to you, sucks them and crushes them before you ever hear what they were, while you cling desperately to the ever drawing edge, literally fighting for your life.

“Get help,” they say. Have you tried it? I tried everything. There isn’t help, not on the NHS. Maybe there is for your depression. There wasn’t for mine. Well meaning people say well meaning words. You don’t hear them. You can’t feel people’s proximity. There is no connection. “Oh reach out”, they say. And you do. And it doesn’t help (it made things worse, perversely, for me. Underlined my inability to connect with people, underlined my failure to be, generally speaking, a human).

I was depressed by the time I was 6, and then it just carried on. Since I didn’t know anything else, depressed was normal. Sometimes it was worse than others. But it was always there. It was there when I slept. It was there, waiting for me like the world’s worst lover when I woke.

And then, last year – at the end of last summer – it stopped. The shouty voice stopped. You know the fellow: wakes you up with his list of criticisms. The things you did wrong or did not do. How ugly you are. What a failure you are. The lists of catastrophes that are hanging, Damoclean, above you. The merest breath of air will bring them down and they are of your making, and why didn’t you do better? Why are you so afraid of everything, so pathetic? Other people manage all this. HERE IS YOUR TO DO LIST. WHY AREN’T YOU DOING IT YET/BETTER? Shouty voice was a palimpsest of noise, criticisms written over criticisms. One voice screaming many different things, all simultaneously. Shouty voice was overwhelming, unquietable, as much a part of my sensory tapestry as the unnoticed rattle of the trains, the trains. The trains.

He just stopped. I can remember waking up to silence. Silence. I still marvel at it every day, especially in the mornings, and at night.

This left a strange thing in my head: like a set of rail tracks. The train wasn’t running on them any more. But they were still there, gleaming like … scars. And I would run my thoughts down them, down those shouty rails, because that was all I knew. But it was like going back to a cafe you’ve sat in with your best ever abusive love, except he’s not there any more, you’re only imagining his voice. It was no comfort, it felt like a bad habit. It was definitely a choice I was making, now, to be there on those deserted lines, hunting for a familiar beating, and so I decided to make other choices. I stood back. Weeds grew across the tracks. They’re still there. You can’t see them now. But don’t walk there because you can trip over them.

So that realisation (AFTER the shouty voice had gone) that walking those tracks was a choice, was the first wave.
The second was the realisation (months later – it took months for the grass to grow over those tracks), that I was choosing bad company in order to prop up the terrible opinion shouty voice had had of me. And since shouty voice had now gone: that was another choice I could make differently. I did. Immediately.

That felt good. Again, it took some time to get used to that new choice: the existence of it, the execution, the consequences, internal and external.

Most recently I realised something quite unnerving. Until I was nearly 44 I knew how I would die. And now I don’t. I haven’t quite resolved myself to this new thing yet. Weirdly, this new thing is terrifying. The idea of being dead was my solace. The knowledge I could make that choice, that that was MY CHOICE, was my only real refuge from some terrible times. Now I wonder how I will die: heart, cancer? Any of the million things that carry people off. They all seem so much more painful and brutal than what I had planned. And yet now I have let my own end out of the box I had it trapped in, and watched it scamper back into the wild (to visit me at its leisure, in whatever form it chooses), I find that that difficult resolution of the self to the idea of uncontrollable death, is about life. It is about the moment that exists now: not what you are doing in it, but your presence in it, how that feels, how you fill it with self and not-self.

These changes come like waves up a beach (as with all internal narratives), and there are many more to come. Some I have an inkling about, but many are invisible to me right now. Sometimes, when I am tired or hungry, I hear shouty voice, as if he is calling to me from outside the house. But I do not choose to invest that observation with any emotion. He remains without… without me.

I do not know why nearly 40 years of depression stopped, stopped dead in the course of a couple of weeks. I do not know whether it will come back. It might. I hope it does not. But I am not afraid of it. I am just enjoying the silence NOW.

I don’t have a magic wand to hand you. But here is a handful of slightly enchanted acorns I’ve found. Take what you want:

- I had been practising mindfulness for about 6 months before it happened. I still do. I recommend it. Did it cure me? I don’t know. Try it.

- The Samaritans are good, when you’re sliding down the lip of the black hole. Call them. They are kind. And they will call you back in the morning to check you are still alive. Which is a nice touch. Sometimes knowing someone will do that makes a colossal difference. And you can’t ask your loved ones to do it. It’s too heavy a burden.

- Try everything the NHS offers, but don’t get disheartened. They don’t have a magic wand either.

And if you need to think about ending it because having that option is sometimes the only way you can get through your day, think about it. But don’t do it.

Don’t do it.

Posted in life | Tagged , , , | 10 Comments

It must come down.

Paedophilia, rape, back-handers, theft of public money, warmongering for profit, the slaughter of thousands every year for profit. The theft of other countries’ – poorer countries’ – money and resources through debt. The theft of the resources of the poor. The punishment of those already on their knees. Sadism. If we haven’t got to ‘murder’ yet, dear reader, we haven’t scratched the surface.

This isn’t a problem of the Tory government – although they do it most transparently. It is a problem of our entire way of life. Our society. Our politics. Our law. Our class distinctions. The way we educate and segregate our children. Our silences, the boundaries beyond which words are not welcome. Our comedy, our mocking. Our obedience. Our assumption of innocence and who we choose to protect with that blunt weapon.

As children, we are taught to colour inside the lines. We are not children. We are the species that conquered the poles, the abysses, the moon. We made civilisations, we knitted a world of abundant food, of art, architecture, of breathtaking machinery, out of mud and mistakes. We are not children. Stop.

Everything, the whole lot needs to come the fuck down. Needs to be torn down. Needs to be replaced by a system where power is truly shared and those hungry for it have no way to keep it, where democracy is truly democratic, Where the first article of our society is a love of humanity, and all else – all else -comes after.

Posted in Uncategorized | 4 Comments

Cis and bigotry.

I was born in 1969. Two years after being a gay or bisexual man became technically legal, but a very long time (indeed the process is STILL ongoing), before it became socially acceptable.

During my childhood, I recall a great kerfuffle among straights over the word “heterosexual”. There was no need for this word, went the logic, because heterosexuality was normal and needed no label. Of course, the people saying this were homophobes in the sense that they viewed homosexuality as an aberration, a special thing that needed a label. We needed to know who the homos were, because they were They. We didn’t need a label for straights because they were Us. And it was important to label homosexuals as They, because otherwise they might end up mixed in with Us, they might want the same rights as Us, they might pass unnoticed among us and they might end up becoming attracted to Us and then we would have to deal with their horrible, warped sexuality (bear in mind this was adults talking, I was a very small child, listening, and yet to develop any sexuality myself).

That was bigotry. Wanting to label a group of perfectly normal human beings so that you can avoid them / so they never come on to you (they wouldn’t have anyway, darling) / so you know this special group of people get special treatment (which consisted of derision and the denial of jobs and various human rights) is a clearly bigoted position. And I watched it in action in my young adulthood: gay people being actively blacklisted at work for their sexuality. We see that that position is bigotry now, because “heterosexual” is now a perfectly accepted term, and gay people are, to some degree and by some people, accepted.

Yet precisely this position is being adopted by some feminists with regard to the word “cis” (which means “not trans”), and it is being touted as not at all bigoted, because why do we need a word that means “not trans”? Only the trans people need a label. Because they’re the weirdos.

This position is as bigoted, and in precisely the same way as the people who “didn’t agree” that they were heterosexual. It is othering. It identifies one group as needing careful definition and labelling. It identifies the majority as Us, who do not needing labelling.

There is a third way. I turned out bi. I also turned out genderwonky: nonbinary. I’m an “it”, albeit an “it” with a massive set of knockers. I’m not trans because trans is a binary position. And I’m not cis because cis is a binary position. If I were cis or heterosexual I would clasp those identities to my substantial bosom, just as I would if I were a lesbian, or trans. We all get to be who we are, we don’t get a choice in it. So my identity is bisexual, nonbinary.

If you think that your identity magically doesn’t need a name, because it is the default assumption, then you are bigoted, and you are supporting a bigoted society’s bigoted norms and bigoted “outsiding” of people who are not like you.

I don’t have any time for that.

Posted in life | Tagged , , | 14 Comments

Advice I would have given me when I first got #MECFS. (#MECFSAwarenessDay)

There are about 250k people in the UK suffering from ME, MECFS, MECFSID, CFS.

The fact we don’t even have one name to call this condition (Myalgic encephalomyelitis / Chronic Fatigue Syndrome / Immune deficiency) says it all.

250k is two and a half times the number of people who have Multiple Sclerosis. I bet if you asked a hundred people if they’d heard of Multiple Sclerosis, most would have, and most would have some idea what it is. But nobody who isn’t directly affected by it / has a close relative with it seems to know what MECFS is, and sadly that includes most GPs (who think it is psychological, when it’s defined by the WHO as neurological); and the UK’s research community is likewise disposed to look into how we can make people think themselves better from this condition. Which is like telling someone with a broken leg to think themselves upright (it isn’t just stupid, it’s cruel).

This is a pretty good defintion.

It affects every system of the body: brain, digestion, hormones, muscles, connective tissue, heart, vascular system, immune response, balance, sight, hearing, temperature regulation. It’s generally very painful. It is variable and a few good hours will be paid for by a few bad hours – or a few bad weeks, depending on how severely you have the condition. Many are completely bed bound by this condition. I spend months each year housebound and too unwell to have visitors. Some people find it worse at certain times of the year (I can do nothing from August to March, but for a few weeks around May I feel almost normal). Some find some supplements helpful, but what helps one person probably won’t help you, because your body and theirs are subject to different stressors. Some get a bit of relief from changes to their diet (I’m less hellish since I went gluten free). There’s no cure. No golden bullet to make you feel better when it’s at its worst. Some people are cured. Most who’ve had it for 2 years or longer won’t be. Over time, most people will learn to live around it – tiny lives with little activity mean no relapses. These people report that they’re improved. What they mean is, they’ve found a level of activity low enough that it doesn’t trigger relapses.

This is how I live.

I love my tiny life. All the fake friends peeled away when I got sick, the people I have in my life now are incredible, solid, kind human beings. I don’t have enough energy to waste on people who aren’t. All the things I thought were important in life peeled away when I got sick, and now the things in my life are just the necessary and the wonderful. You do actually get used to pain, both suffering it and knowing when to manage it with painkillers (a painkiller will require your body to do some work metabolising it. Sometimes therefore taking a painkiller will knock you out for 15 hours because your body just doesn’t have that energy spare. You learn when this will happen and make your choices accordingly. Pain is usually preferable to being asleep, for me). I walk with a stick about half the time now. It’s not as big a deal as I thought it was, before. I’ve found my level. I potter to my allotment plot and do 5 minutes’ watering every few days during a good month. On a good day I can do 10 minutes’ actual work, and the sense of achievement I get from that is incredible. I take my wheelbarrow down with the tools because it’s easier trundling that than carrying tools. I often use my spade as a stick. It is astonishing what you can achieve with five minutes’ work, provided you come back and do the next five and the next … when you can.

I try to see friends maybe twice a month. On a good month. More is a mistake.

When you first get this you think you’ll get out of it somehow. You try all the supplements. You try all the snake oil. You deny how bad it is. You’re scared. You’re increasingly isolated, and that’s scary (but the peace of isolation is also what you need). You’re in pain. You’ll have all this to deal with AND you have to deal with your relatives’ reactions, which can be anything from trying to force you to buy 3000 supplements (don’t. They won’t cure you, they’re just for the benefit of your worried relative, and as gently as you can, you need to say this to them). Sometimes a relative won’t believe there’s anything wrong with you, and will act as if you’re “just lazy” or “just” (JUST!) depressed. Again, as gently as possible, explain this is balls. Gently, but firmly. Your GP will try to make you do Graded Exercise Therapy, or attend CBT sessions. GET has been shown to make most MECFS sufferers worse.

It is very, very hard to police your boundaries when you’re too weak to wash your own hair. You will be short tempered and hard to be around, because you haven’t the energy for discussion or disagreement.

Lots of people DO get better in the early stages. Stay calm. Wait it out.

Some don’t. At some point if you’re one of the ones who stay ill for longer than a couple of years, you will definitely have to deal with depression, because the realisation that your old life has got up and gone is devastating, and it’s not a realisation that arrives quickly, nor is it a realisation that you will get over in a day or two. It’s a grieving process like any other. It keeps coming at you. This is why your GP probably thinks MECFS is caused by depression or anxiety: almost everyone who has this condition badly will suffer from depression and anxiety at some stage. Hang in there. It will be with you for a while, but it wears off. Talk to kind people. Listen to them, too. Don’t wallow in sadness, but do let yourself feel it. Don’t be afraid of that feeling. Don’t be afraid of getting help from your doctor for depression. It’s ok. The depression will pass in the end.

And somehow over the first few years you learn to cope with this, and what emerges is that all of the above can be true and you can still have a great life. I’ve gone through that period of adjustment and come out the other side, and I haven’t ever been as happy about being me, as I am now.

The company (virtual, mostly) of other people with this and similar conditions is lovely. They get it. And talking to them teaches you you’re not a weirdo, you’re not malingering (you will believe you are for a long time, every time you have a good hour or a good day you’ll think “but there’s nothing wrong with me!” – and then the next day it all comes back). You will find strength in their company. You will enjoy your achievements more than you ever did, when they were easy. Your life will contain more wins than it did, when you did a thousand things a day without noticing any of them.

Hang in there. You are stronger than you know, more determined than you know, and cleverer at finding solutions than you know. Life is beautiful.

Posted in all about ME | Tagged , | 6 Comments

Complain to the Attorney General.

I’m going to keep this short and focused.

On Friday, Adam Hulin walked free after oral rape and assault by penetration of a 12 yo girl, with a community order, counselling, and a £60 victim charge bc the judge doesn’t want to “prejudice his career.”

Here’s the story.

We have 28 days to write to the CPS and complain about the sentencing remarks & the absurdly low sentence.

It is about time this country’s judicial system took into account the lasting effects of rape on the raped, and stopped passing judgements based on the lasting effects of rape on the rapist. He had a choice. She didn’t. This is not justice and it’s long past time we kicked up a fuss.

Here is how to do it.

Thanks to @cdaargh on twitter, for digging out the complaints procedure.

Posted in news | Tagged , | 1 Comment

The revolution will be blogged.

I am smack bang in the middle of the one operational window I get each year, where, for a few weeks, I can forget that my body doesn’t work: things like holidays and love seem attainable, and the whole of the last eight years is dimmed, like a dark and improbable dream told to me by a stranger, and only half believed. I love this time of year.

Before, when I was well, the house almost always smelled of paint because
a) it needed EVERYTHING doing to it when I moved in – seriously, everything. Rewiring, replastering, replumbing, oy, the works; and
b) I loved doing it.

I am never happier than when muddy or painty, filthy, in old clothes, left to my own devices to BE filthy and in old clothes. Anyway, aside from one happy anomaly, in the last six years I’ve done no decoration or DIY except to repaint my bedroom about three years ago.

Long before that, I decided that my porch minged. I bought the architrave necessary to de-ming it (shh, it is a word NOW); and I propped it inside the front door, and there it has stayed probably for seven years. Maybe longer.

Here is an example of how minging my porch was:

Despite the fact that I almost always have had this period in the spring where I feel fairly normal, I have never felt normal enough to get any decoration done. This year’s different, in that this year for the first time, I’m gluten-free, and although that’s such a maligned and buzz-wordy thing to embrace, the fact is, it has made – and continues to make – a colossal difference to my health. It hasn’t cured me. But it has taken a layer of suffering off me that has real and measurable impact on what I can achieve on a good day. I’ve been off gluten for nearly four months now and am still noticing improvements. I don’t know where that will end.

Anyway, I had Daddy here for Easter, and he kindly took me to get some paint and things (just getting them would ordinarily use up any energy I had for doing anything once I had them), and here’s the result:

My porch is now very clean and bright. The cellar spiders that colonised the ceiling have been carefully lifted off with a soft broom and persuaded out. The wood is primed. The gaps are caulked. The brick, bell, frame and doors are painted. The lamp is re-hung at a less annoying height. And in the next couple of days I should finally get that architrave cut, pinned and painted.

None of this is a big deal. Except it is. It’s a transformation I effected, and being the entrance to the house, a key one.

Of course, that bell doesn’t WORK. But let’s not nit pick.

Posted in all about ME, life | Tagged , , | 1 Comment