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:


(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.

20″ sq acrylic on canvas “Woods.”

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.


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.

Posted in all about ME, gardening, life | Tagged , , , , | 10 Comments

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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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.

Posted in all about ME | Tagged , , , , | 4 Comments

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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BT Infinity: the world’s worst Christmas ornament

The ad shows a small, sleek, black box. An effortless connection. A dude doing All The Things on his sexy laptop and on his phone or tablet.

What I have thus far is:

- A small sleek black box that cuts out intermittently
- a separate fugly white box with lots of flashing lights that has to be connected to it, which is in no way shown in the ad.

The two, despite being joined, have to be as far apart from one another as the cabling will allow, if you want them to actually work. So they’re strewn across my bedroom floor, providing a fantastic trip hazard for a poorly sighted disabled woman.

It still doesn’t work.

According to the BT helpdesk staff I have spoken to thus far – the most recent of which called me solely by my surname, talked over me and shouted, which was pretty special – the problem is:

- I have a telephone
- I have a cordless telephone
- I have a corded telephone plugged into the BT telephone socket
- I have walls
- I have windows (I am not making this shit up)
- I have some other electrical devices in my home
- My computer, telephone and tablet should, at all times, be attached to my BT Infinity wireless hub with an ethernet cable


Wait WUT.

Yes. You heard that right. If you want a reliable wireless signal on BT Infinity, you should at all times be plugged into the hub on an ethernet cable. Otherwise they can’t guarantee a connection. Obviously your silly newfangled phone and tablet will not be able to achieve this, what with not being ethernet compatible, but we’re all running Windows NT on a tower and nobody has a mobile phone yet, so that isn’t a problem, right? RIGHT?

The history of this is that I had a problem with intermittent cut-outs on my broadband for about a month on an old BT Hub 2.0 with its own cordless hubphone. Then I upgraded to Fibre-optic Infinity to solve this problem. Which I was told would work with those phones. It didn’t, so I had to buy a new phone. The new phone would not get a ringer signal from the new BT Infinity phone socket (even with an ADSL splitter, which it is not supposed to need, or with an alternate ring capacitor). So I had to buy a new-new phone which was actually getting enough of a signal from the socket to ring when someone, yanno, RINGS. (OK, it’s only ever my mum, but my mum is important.) However, I now know that plugging a telephone into the phone socket that comes with a BT Infinity package is a no-no if you want your BT Infinity to do anything other than illuminate part of your house with a variety of flashing coloured lights.

At this point BT Infinity is basically the world’s worst Christmas ornament.

Posted in life | 1 Comment