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So, I Got Married

A crosspost!

It’s been a while! I deleted a post which said I had been down.  Multiple reasons, will go into those later.

This entry has been over a month in the writing, so if it is wildly varying in tone, you know why.  I should also mention: I am writing this largely for my own reference, as I haven’t got the best memory so have been writing this as I go.

Which is why this is part 1.

If we’re being all diarist: Weight gained since July: 15lbs (seriously.  I also made no attempt to do that whole losing weight before the wedding thing because I couldn’t be arsed, then ate a stone on honeymoon).  Alcohol: HOLY SHIT  MY LIVER etc.

Hello! I got married two weeks a month ago! So, for my Google searchingness- I am now Ms Seaneen Molloy-Vaughan. Which sounds rather posh. Never thought I’d be a double-barrelled (and I was never going to be a Mrs.) but I can’t give up Molloy, and Vaughan is too cool a surname to wave by shaking my head at. So there you go.

It was a fantastic day.

Classy. I’m the one in white.

But before I go into the fantasticness- a few gripes! I don’t want to end this post negatively, but I do want to briefly moan.

First of all, the niggles so I can rant somewhere and so I don’t end the post negatively (it was an overwhelmingly positive six weeks).

1) Many, many people gave me the same piece of advice, which was this. Find 10 minutes during the day to be together, just the two of you. We didn’t do this. The reception, especially the evening, is an absolute blur. In the nicest possible way. My beloveds at the ceremony and then more beloveds turning up all through the evening. Every time I said hello to one person, another lovely person was there to say hello to also! It was very overwhelming and it made me rather tearful. (It may also be blurry due to copious amounts of booze).

2) Stress does ruin it a little. It was the most stressful thing I have ever organised in my life and I wish I had sat back a bit and let it happen.  The week before I was a wreck.  I cried a lot- I cried because I missed my dad, who I didn’t even mention in my sort-of-speech.  I felt awful about this, until I remembered how much I had cried.  I think I just didn’t want to cry again.  Besides, I was wearing a locket with his photo on his wedding day- he was there.

I was also emotional meeting my friend David, who has been one of my best-internet-friends for 9 years.  Him being there (having come from Baltimore) added to the mad surrealness of it all.  I felt like tapping his face to see if it made the, “Thunk” sound a monitor does, which I definitely wouldn’t know, nope.

GET BACK ON FACEBOOK CHAT YOU WEIRDO

It also added to feeling of quite overwhelming privilege.  I cannot believe how many people stepped up to help, to be there.  I felt so much more honoured than someone who chainsmoked her way through her wedding appeared to be.

On the morning and the night before, I was incredibly stressed. The place was a mess when my big sister Michelle arrived, but she managed, in her magic way, to clean it in about half an hour.  Then everyone came and the quietness I had had that week vanished- my family were there (my mum and baby sister for the first time) and it was definitely happening, and it was real.  I felt very emotional saying goodbye to Robert as he went to stay with his family, and I felt emotional saying goodbye, in a way, to my own family.

They were devastated.

Face masks were on (they are not my family’s actual skin- their skin is green, as all Irish peoples’ skin is), and my mum- my MUM!- even had a cheeky drink.

Adrenaline kept me awake until 5am, but I did have to take medication or else I would have started to get the runny-nose-sneezing-itching withdrawal later in the day.  I could only be roused at 11am and, as my sisters were out faithfully sourcing me a, “Something blue”, we were very late to get started.  So my flat was a nest of screeching, stressed, snappy women (and my brother, who was on Facebook), half-high on hairspray. Not the relaxed, “Haha, let us pose for photos where I am drinking fizzy shit and looking excited and oh look, I’m being reflected in this grand mirror which coincidentally has a bunch of white roses in front of it, how lovely!” mornings you so often see on wedding websites. Because of shit taxi (3), I also exited the flat not in a cloud of  bridely serenity but screaming down the phone and scaring the neighbours.

I shouldn’t have been so stressed, as we got a lot of free help. A fantastic reader-now-friend Emma (of Fussy Tarts) made our wedding cake and loads of cupcakes. And look at it, it is just…amazing. And delicious.

“This was a triumph…”

My sister in law Kate made more cupcakes so everyone was well fed. My friend and Rethink companion Abigail did beautiful flowers for me and the bridesmaids (and the bouquet toss was skillfully executed by 4ft 11″ me not being able to throw it properly thus launching it into my friend’s face, then taking it back because it didn’t count and hey, THEY’RE MY BLOODY FLOWERS ALRIGHT) and Suzanne made the room and garden look beautiful with balloons, sparklers, bubbles, lights- it was gorgeous.

Everyone looking very happy here. I think we were delirious from hunger after the long wait for the ceremony.

Part of the stress was doing it on such a tiny budget. That beautiful room, and beautiful garden, with gorgeous food and (it nearly floored me, I felt so fancy) wee glasses of fizz on arrival all came to £600- for 50 people. So it can be done! If you don’t mind giving yourself a hernia in the process. (If you’re in London, it was at the Cambria in Loughborough Junction.  They were brilliant).
3) I was partly stressed due to the UTTERLY UNPROFESSIONAL Brixton Cars. Obviously, I couldn’t afford a car to take me there so I ordered an 8 seater taxi after another company let me down. I wish I had accepted their offer of 2 taxis and not rang this shower of bastards. They came 40 minutes late, by which time I had missed our wedding slot, and then got lost on the 5 minute journey (in two separate taxis as my superstar friend Sarah had been frantically ringing all the taxi places in the area so we actually got there). As a result, instead of relaxing before we left, I was screaming down the phone in complete panic. As another result, the timing of the day was an hour and a bit late. So we had people for the evening arriving during the speeches, and then our first dance (which was about the 20th by this point) much, much later in the evening, after the party had started, in front of loads of people and I was so awkward I just ate Robert’s face off. I had also forgotten most of us smoke and drink so everyone was in the (beautifully decorated, thanks to my friend Suzanne) garden and I had to call people up for the first dance, which is not what I wanted to happen! It felt a bit like calling the kids in from school. “Aw, MUM! Do we have to?” *puts out fag*

4) We went on honeymoon to Rome.  I now understand why people laze on beaches and drink coconut milk and suchwot on their honeymoons.  We were so tired we could barely move. It also rained heavily for most of the week, which, on arrival I was rather irritated by, but which turned out to be a blessing.  It was wonderfully cool, and there were lightning storms! I’ve never seen forked lightning and I kept waking up my sleeping husband (more on that later) by squealing.  I did take photos on my phone, which brings me to niggle 4 proper.  Don’t trust friendly Romans, because they will steal your phone.  On your 27th birthday.  All my wedding photos, texts, and photos of my bum (taken for medical purposes- really) gone. This WILL cause a massive fight with your beloved because you are a) pissed and b) pissed the fucking-fuck off.  We made up for it the next day, however.

Right, niggles over!

I have never been so nervous in my life.  And I’m a pretty nervous person.  I’m someone who turns around from nights meeting friends and fakes illness, or, even more ridiculously, fakes going out to people when what I did was sit in the house.  As soon as Robert left, I hit Twitter. And I try to do Twitter, without much success, but I was a demon that night.  I looked for any indication he might not show up.  This is social networking nerves.  Has he just tweeted, “#marriageisforknobends I’m going to France”? I didn’t really think he wouldn’t show up.  But I was aware of the huge enormity of him not doing so.  I read multiple, “Ditched at the altar” tales and reckoned with myself I’d still be pretty cool with the cats and Robert’s bollocks as earrings.  No harm done.

#fuckthisshit

I’ve always been close to my family.  I’ve lived in London for 10 years and I have never met anyone who understands my background.  The poverty, the penances, but moreso, the bond you have, through better or worse (I heard that one later). We are weird.  We are dysfunctional. But we love each other.  It was the first time I had ever had my mum in my house, and the bickering, the arguments, the jokes- made me keen and yearn for my childhood.  For a life I was leaving.  Willingly, very willingly to make my own family.  But I felt the pain acutely.  I wanted to talk of unicorns and shit and distract myself from the massive step I was taking.  But it was like Christmasses.  It was difficult not to revert to my childhood self, to be the adult, to be the person whose home it was.

I didn’t feel grown up.  We’re not grown ups.

Robert. Silly, tall, funny, bizarre, beautiful man, who was now going to stop being my fiance (he was adamant I used this word, I never got used to it, how would you in 8 months?) was going to be my husband.  In the months and weeks and years before I felt a kick a pride every time I saw this messy haired silly sod through a crowd, his Dulwich Hamlet scarf, even in hot weather, tucked up to his chin, his beautiful hands. So vivid and colourful and real.  He was mine.  And I was his. My first love.  And my last. (Which I had engraved into his wedding ring).

But to be someones’- really someones’- You don’t need a marriage certificate for it, of course.  But that is what we were doing.  I remember looking around the newly tidy (thanks Michelle and Orlaigh!) flat and thinking, “What would a wife do? Should I be different now? Apron? Duster? Stockings?” And deciding- not much and kicking my shoes onto the bedroom floor, hanging my tights around the heater, like I have always done (but cleaning plates as soon as I’ve used them: WHAT HAPPENED TO ME? WHY DON’T I LET THOSE WONDERFUL GREEN COLONIES GROW ANYMORE?)

I’ve already mentioned the morning. My family and my friend Sarah were with me and kept saying, “It won’t matter, really, as soon as you get there, this will all mean nothing”.  I told them, politely, to go fuck themselves.  Of course it would, I bet I’ve missed my fucking wedding!  Robert’s gone and married a fucking chair! He’s currently commenting on its sexy velvet upholstery while I’m standing in the middle of the council estate I live in bothering the fucking neighbours!” I got out of the (free) taxi, outside the register office and:

YES I LOOK LIKE AN EEJIT. But that was my actual expression when I saw everyone

Because my phone got stolen, I only have a photo of later.

People I loved, adored, all standing there.  Waiting for us, and our wedding. My mum in law, my sister in law, and Robert, not there, hiding, doing his groom thing.  All proud and tall- even Rhoda looked tall, even tiny Laurie who I often stand on my tiptoes when talking to- looked tall.

And nerves- but different nerves this time, not taxi nerves, not, “I look like shit nerves” (I did my own make up, but my lovely sister did my hair) but, “Holy shit, soon I will be getting FUCKING MARRIED” nerves kicked in. Delicious, fizzing, terrifying, hands numbing nerves. This. Is. It.

And then, dissolved, as they are, by life.  What the hell are we supposed to be doing?  I called our guests in about six times then exhorted them to stay outside.  Lots of photos in the register office room with my family and my family-to-be.  Thankful of the something to do. Feeling like my knees were going to go any second.

GORGEOUS SODS.

Occasionally Robert’s best man Nick came out of the room.  Every time my heart skipped a beat that he was going to blythely announce that Robert had crawled out the back window.

The registar came.  She was amazing.  ”Do you have the music?” I demanded of her.  She reassured me that she had 20 years experience in this field.  ”But the person who does the music just started today”.  From my rigor mortis face she laughed.  And then-

“How do you want to walk in?”

My bridesmaids first.  My sisters: Michelle, Paula, Orlaigh, and my sister in law, Kate.  Then me, on the arm of my little brother in the vestiges of, “Father of the Bride” (in my dad’s obvious, aching absence.  My brother asked if he should cut his dreads off. Silly man).

Everyone turned to look at me.  Smiling smiles that broke faces.  It was unearthly. It was like I was being welcomed into heaven.

And then I saw Robert.

Robert usually has incredibly messy hair.  He sprays it with coloured spray.  Barely washes it (likewise, I don’t wash mine often).  He looked so neat.  Like a boy at his holy communion.  Newly washed and scrubbed, clean and clean shaven.  It was odd, I don’t see him like that often.  But so lovely- the knowledge of how seriously he had taken it. Not that I doubted it. But I know him and his worrisomeness, and imagined him, in that second, worrying about his hair. And such a smile.  And warm brown eyes.  And beautiful-beautifulness, charming charming-ness, shyness. Proudness.

I can barely remember half the ceremony.  Just the, “ssh” of cameras and the registar saying stuff while I felt dizzy and unreal but so, so happy.

And our vows. Holding hands.  Awkward in front of the glare.  Meaning anything more than I had ever meant. As long as we both shall live.

Robert winced at, “the union between a man and a woman”.  Visibly so.  I was too cuckoo to notice.

My love. My darling.

Unfortunately, Robert’s wedding ring was a wee bit small.  Nothing a bit of Vaseline wouldn’t fix.

That’s his mum losing it in the background!

Then we were pronounced husband and wife.

You may kiss your bride!

To cheering, roaring applause, we married.

The rest to follow!

Happy father’s day to my dad. And thank you.

Cross post from Secret Life.

My dad died six years ago, at the age of 47.  If you want to know how that happened, you can read this post. 

Image

Ah, he would have found it funny.

I hate this time of year. Father’s Day often used to fall on my dad’s birthday and I would be so grumpy I’d have to buy him two lots of stuff for one day.  How I wish I could do that now!  I am stupidly jealous of people who still have their dads, and more jealous still of the ones who don’t but whose dads led wonderful lives, and of whom they have brilliant stories to tell about.  My dad led a pretty awful life.  Five children weren’t enough to make him want to live.  When someone’s life is as sad and terrible as his, you don’t think they’ll die- they will of course, have their breaking point and turn it all around.  Live to be an old man, to see his children grow and get married.  I had this image of him in a chair with our children on his leg, letting them fall, fall towards the floor…then jook! He jiggles his knee and they fly up again, like he did with us when we were children.  A man of savage potential, of natural intelligence, deserved a better life than he had.  Sometimes it is hard to accept you were part of that life, and could not save it.

But he died anyway.  And he’s not here, and I will be having my wedding day without him. As will my siblings.  Sometimes that thought floors me.  All we have now is memory and we have to search pretty hard for the good ones. The bad ones are the ones that make me wake up at 3am sometimes, images and vignettes I have to squeeze away, rub my eyes and look around, touch something real and present and soft.   I find it hard not to be bitter sometimes. But they are there, small and fading, taken out and hugged so often they are frayed at the edges, and distorted due to my mum but still there.  Such as:

(Long pause as I try to remember)

I remember my communion day, when I didn’t know whether to give him a hug or kiss or something.  He kissed me on the cheek- very dry and stubbly- and said he didn’t do it a lot.  He didn’t, and he looked awkward and shy and very sweet and proud.

Toasted toppers on a Sunday

The time when mummy was in hospital and he didn’t drink for a week.  He made us go to school and made dinner every night- with white bread on the table, all buttered, and sweet tea for each of us.

Kicking open my door when I was watching a documentary on Kate Bush and bellowing the lyrics to, “Babooshka” before shutting the door again and laughing.

Telling people in work that I was, “on TV” when I got letters printed on Teletext!  And his unfortunate finding of me on Google and ringing me, addressing me as, “little miss Clara” before howling with laughter and passing the phone to my mum.  Scundered.

Taking us to work and playing with the frequency machine so our ears would split open when we annoyed him.  Or for a laugh.

His often, “THAT’S NOT REAL MUSIC” when I listened to Manics (he often conflated their name to show his disgust).  Listening to David Bowie with him.  Watching comedy with him.  His insistence that David Sherlock didn’t deserve a boyfriend as beautiful as Graham Chapman.

Coming downstairs in the middle of night and seeing him with the dog he professed to hate under his legs, being petted.

That the Muppets Christmas Carol was one of his favourite films, which he’d watch in July.

The memory of him, when I was 12, in a black dress with a white stripe down the side, getting ready to go to America for 6 weeks (it was a disaster).  He told me I looked like a woman and his eyes filled.

BUT THE POINT IS…

the point is…

…..

More than the memory remaining of my father is his children.  My siblings and I are in his image.  Not just his eyes and chin, and shortness and one sticky-out ear.  Fundamental things about us we have inherited from our flawed and funny father.  Our sense of humour, our resilience and compassion (even though it was a compassion borne out of witnessing suffering, of our own suffering.  But you understand and accept an awful lot about people when you grow up like we did), our left-wing politics, our love of reading (he started us very early, and would take us to the library and leave us there with books while he did the shopping), of learning and of questioning.  He taught us to teach ourselves and would give us the tools to do it.  My enduring love of seeing how things work, of, as I call it, “fucking around”, came from the chemistry sets he nicked from school for us to play with. He is partly responsible for the many computers I’ve pulled apart and looked inside, of my fascinations with medications and trickery and how the body works, of being a bit of a smart arse know it all who likes to teach people things. He’d bring us home pencil cases full of pens and blocks of paper to write and draw on.  More than anybody else in my life, my dad encouraged me to be a writer and completely believed that I could be.  I am proud of the people my siblings and I have become, when we could have become broken people lost to bitterness and pain.  And we haven’t.  I have never met anyone as compassionate and strong as my siblings.  I am incredibly proud of my family. I hope he would have been of us, too.

So, thank you, daddy.  I love you, we all do, you silly bastard.  Oíche mhaith.

Sin-é.

Narnia: Remembering my childhood

My friend Neil of Cook’d and Bomb’d asked me to repost this blog post from February 2006 (so long ago, written as a barely a child myself at the age of 20). A post about my childhood- well, one side of it, anyway.  I’ve written often enough about the traumatic and isolating side of my childhood, of being a child of parents with mental health problems, parents who fought with each other and us.  But I have many beautiful memories of childhood, little vignettes, like this.

When I was 18, I rolled a coin into the sand because kids like to find treasure. I remember once finding £20 in the grate- ok, so it was Grown-Up treasure. I took it to my mum, and when the ice-cream van came, she got us all 50p tubs, with fruit and jelly.

I used to have adventures. A massive ladybird in the field, so large the leaves beneath it were sagging. I wanted to catch it, at least touch it, but I was afraid of it. It was a luminescent orange and my dad told me once that orange insects were poisonous. Is this true?

I used to have adventures. We lived in an odd area- a council estate nestled among farmland. My back garden was a litter tray, where Tiocfaidh, our Fenian dog, would whirl round and round like a cartoon scarecrow, pawprints over the animal graveyard, a fish called Bettie, two dogs and our hamster mortuary. The fence ran around the houses, reminding me of the tribal villages that seems bound only by planks of wood. Behind my fence lay the farm, a smattering of sheep, mooing, doze-eyed cows slanting on the hillsides with a dog flitting in and odd among them, barking and biting their own tails. Next door was Dessie.

If our street was a tribe, he was the elder. He had one glass eye which would collect gunk like a sink, and blink like a fish, bulbous and wise. He had corn coloured hair and he smoked a pipe, I’d watch him light and relight it as I walked behind him. He dressed in blue wool jumpers, and smelt vaguely of childhood, of Danny’s horses and my aunt Rosaleen’s death bed. He lived next door to me and made a gate into the fence so we could walk up to the farm just by opening a latch rather than braving the streets, where he knew I’d be ducking past the bricks that seem to habitually fling themselves from the hands of the kids there.

He used to take me and his granddaughters for walks. We’d slip outside the gate- from council estate to rural Ireland in one step- and up to the farm. He knew the farmer. We’d all run screaming from the bulls while walked calmly ahead, flicking tobacco scraps into the mire. He shook hands, and mumbled, they talked in a foreign language of some lost land, and we’d run to the stables- they had horses too.

I met Patsy. Patsy was a pony. Danny had a horse and cart and I never felt so regal, so above the kids in my street who bullied me than when I was taken down the road in Danny’s horse and cart. They all moved out of the way so we could pass, slowly, dangerously, but they moved anyway. Patsy was grey, dabbled with deeper greys so her coat resembled the sky in a quiet day. She was gentle and I loved her. Christina and Lisa would run around, shouting at the chickens and fighting and I would sit peacefully listening to Patsy breathe. We sat side by side in sisterly silence until Dessie would come to take us home, or maybe we’d try and make baked potatoes on a fire, but it never worked, the outsides would be black and the insides raw. No matter how much pepper I put on mine I still caused little eruptions when I spat the ruined food into the heart of the flames. I could make jam, though.

The descent was a run, from the top of the hill to the bottom, and I joined in. Nothing, nothing at all felt freer than running down that hill, away from the street and the others, skipping over cow pats and then eventually slamming your body into the fence with the velocity of your sprint. We’d go in and make tea, and I’d watch the cows from the window, who just stood there like ornaments, doing not much at all. Dessie sat us in the back garden, on the patio he’d make especially for us, but he had also made a sort of rim, a wall within, and we all hid there. I’d sit under a blanket drinking tea, running a greenfly over my fingers and thinking about what sort of ladybirds were really poisonous. I’d pull the blanket- an old, dark brown threadbare blanket, like a sack more than anything- over my head, and pull my book under, sliding my hands out like a thief and retracting the pages, with a pen between my lips and a cup of tea hoarded underneath my knees. And I’d write stories, illustrate them, stories about Patsy and about lying in a field on your back with only the sky above you, and nothing, silence, peace, away from bricks and shouting, just alone. Sometimes I’d write about the lands I discovered when I was in the bath, wearing googles with my head underneath the water, coral reefs and mermaids and hierachy. He let me sit in the garden even when his grandkids weren’t there. He’d look out the window at me, with nothing but one grazed knee folded up and my inquisitive eye occasionally emerging from the sack to see if he was around. And then back into half-light, where ink and paper was.

I spent most of my time under sacks scribbling, and I had adventures. We met at the tree- it was just on a street but also right next to the farms. I’d be nested in the branches and Geard would come, freckled and jug-earred, full of the day, and I’d throw something at him and we’d go. I peeled slugs and once stuck a leech on him. It’s the one thing I really loved about where I used to live, in that it was Narnia- from the disgusting, piss-smelling streets to the fields so quickly. We’d trudge through the grass and find rivers, where spindly, weak looking fish spilled over the rocks, and I’d grab my hands and say you could drink the water, and he’d say that mammy said you’d die if you did. I’d drink it anyway, it looked clear, but as soon as it passed my lips I realised I was practically eating muck. We’d go past my grandad’s where I’d run up the tree trunk and shout through the window, and he’d come out and yell at me to get down, especially if I was wearing a dress. He’d say everyone could see my knickers and I’d laugh and eat leaves.

There was another rope swing as well, a somewhat more dangerous one. It was tied around a strong branch of a massive oak which bowed over a crevice, not an enormous one, but it was covered in nettles. People would grab the stick on the rope and jump off, sailing the whole way around and then coming back. The time I did it I took a running jump, and ended up with an arsefull of stings. I bowed when I fell, but cried when I got home, lying in a bath of camomille lotion and being too afraid to touch my alien skin. I always fall with style, though.

Near the trees my granda would later cut down there was a clearing, and we’d claim a branch. I’d later have my first secret, dry little kiss there with Geard. When it was over I crawled into the undergrowth and went to lie alone under a tree, which was protected by a ring of high grass. It was near a little river and I could hear the feeble fish flail about. I spent the rest of the day, and most other days, collecting frog spawn or looking for frogs. I once managed to catch a fish with my hands but it looked so suffocated I threw it back. The only animal I ever trapped was a field mouse who was sick and eventually died. I even let the ladybirds go quite quickly, although I loved to look at them.

Dessie asked me to come so I went next door and he gave me an Eyewitness book about birds, which was a godsend. My dad had binoculars (I don’t know where they are now) so I’d sit in my parent’s bedroom and lie on my belly, looking at the birds, and the farm, and the foxes that occasionally sneaked in and out of my view.

I wanted to find Narnia. My mum had a full length mirror, too big for me, but I could hold it. So I used to hold it opposite me and try to follow the path of the reflected world. I hoped one day my steps would take me beyond the looking glass, but they never did. I eventually fell over and smashed the mirror, and then reverted back to my binoculars, intent on observing the world rather than discovering my own.

Dessie died shortly before we moved away, and I never went back there, because I’d have to go by the streets. They remembered me for being the small weird one and I remembered them for being the ones who forced us build the gate that opened up to where all my happiness was. I used to have adventures. They didn’t.

Getting Married While Mental

There are lots of things a bride-to-be has to consider.  What will I wear? Are people going to fight?  How on earth will I be able to wee in a giant dress?  Is it acceptable to be drunk at your own wedding?

But with our wedding day speeding towards us, there are things I have to consider which, quite frankly, I wish I didn’t have to.  Mentalism.  Butt out!  Can’t you just go one day without bothering me?

The first big piece of advice I got about wedding planning was, “Make sure the excitement and stress doesn’t make you ill!”  Well meaning, of course, but it’s not what you want to hear.  Of course, weddings are stressful (I had no idea how much until I got engaged, if anything, it’s the politique that is the most stressful, especially when you do not want a big wedding and are doing it on a shoestring but a lot of cultural expectations dictate this and that) and you hear about people turning into, “Bridezillas” and having a breakdown before the day, being carried down the aisle with a limp arm resting on their minivan-size dress.

The sad thing is, though, I knew they were right.  I have spent nights up frantically clicking on photos of dresses and poof! A night’s sleep is gone, just like that and the next day I am a bit, OOH.  Worse, though, is the happiness side of it, the excitement which can tip someone over the edge, but it’s okay, my deadening, zombifying medication takes care of that.  I’m allowed to be stressed, but not excited.

We are having our wedding at 3.30pm on a Friday afternoon, not because we particularly wanted a late afternoon wedding, but because there is the very real possibility that if I take my stupid medication I will either sleep in or be so drugged I will slur, “I do” and panic my soon-to-be-husband’s family that he is marrying an alcoholic.  Or worse, be so drugged I haze through it, unfeeling and unthinking, as I do a large proportion of my life. I am genuinely afraid I am going to be absent on my own wedding day.

There’s the other consideration, “Oh shit! My arms!” Besides what I wrote in my last post, I really don’t want to have my arms out, I would just be too uncomfortable.  They look frigging awful in photos, too.  So I am less thinking, “I’m going to get a pretty dress” and more thinking, “In what way can I cover my arms and not bake in August?”

And, of course, the expectation that a bride must be A BEAUTIFUL FUCKING PRINCESS and, for someone with body dysmorphia and a past eating disorder, it’s unsurprising that some of my latent anxious behaviours have kicked right back in.  On this count, at least, I have finally admitted some uncomfortable truths to Robert, which is the first step in me taking back control.  But I saw myself on video a few days ago and went into a mad tailspin of being unbelieving I looked like that, and suddenly could not bear the thought of people looking at me, and they will be.  Unless I staple a veil to my face. And body.  I find social interaction incredibly nervewracking too so what the hell am I going to do?

I also worry that I will wake up two weeks beforehand and be nailed against the wall by depression.  Robert knows how swiftly, how severely it can hit me, out of nowhere, like the big stupid wanker it is, and says it’s fine if we need to cancel the wedding because of it, knowing the day will not cut through the fugue (because absolutely nothing does). But that is kind of my worst nightmare.

All this said, though, I am delighted to be getting married to the love of my life.  Urgh! I hear you boke, but he really is.  He is my messy, silly other half, my first love, and my last.  He is wonderful and he makes me extremely happy. I am excited about getting up in front of my family (alas, Granny Molloy-less, she is too frail to come, and minus my dad) and friends and saying, “THIS ONE HERE, I LIKE THIS ONE THE BEST”.  I’m excited about having our first dance, eating cake, buggering off back to our hotel and then frigging off on honeymoon for a week.

(We are going to Rome. We have a honeymoon register as we don’t need household stuff here: http://www.honeyfund.com/wedding/robertandseaneen which apparently you are supposed to post on your wedding website?  Who has one of those? All this stuff is an etiquette minefield.  But I’ll be 27 while I’m in Rome!  I lived to 27! Jesus!).

And most of all, of course, I am delighted and excited to be marrying Robert, and to be spending my life with him.  He is pretty cool.

But this all brings uneasy questions to the fore.  Uneasy in their, “This should be easy” and it’s not.  Children, for example.  I do really want to have children.  I have had “those” discussions with doctors that have ranged from, “NO” to, “Be careful”.  And we will be careful.

But can we handle children?  We are intelligent, mature and loving people, but one of us has the tendency to go a little mad.  I spent some days in perinatel psychiatry lately.  And it was terrifying to be confronted with my possible future.  It was another imagining- like my wedding- were mental health makes an unwelcome intrusion.  If you have a history of manic depression (technically, I’m not sure I do, but it is probably that, let’s face it) or if your mother has had postnatal psychosis (mine has), you get an automatic referral to their services.

“Services”.  I spent such a long time worming my way out of them, and I may worm my way back in.  I am glad these places exist, I think perinatal and postnatal illness is something that should be given more attention.  But to exist within them?  It is not how I imagined my pregnancy.  I thought it would just be me, the dad and our big lovely belly.

I have been pregnant once before.  And the circumstances were very different, so it probably affected my mental health with them being as they were.  But hormonally and physically, within a very short period of time, I was a mess.  I was crying constantly. I found what was happening to my body utterly distressing.  I lost my shit and it took a very long time to recover it.  But again- could have been the circumstances.

But I have also seen my mum when she was ill and it was extremely frightening.  And with lack of sleep being der rigeur in new mums, I wonder if I will go the same way as her.  It scares the shit out of me.

And then as a mother.  I know lots of mums with mental health problems who are great mums, but there is a chance I won’t be.  I had a shitstorm of a childhood which has given me a fuckload of issues. I don’t want to repeat those things, I don’t want to give my issues to my children (for a start, I will REALLY need to sort out my body image). Then again, every one has that worry, it’s not just people with mental health problems.  Who may be viewed by others as an incapable mum.

Well, balls to them.  We’ll be great.  We have love! Creativity! And very sweet cats.

And if I do go psychotic and mad (and it’s quite rare so what’s to say it could happen?), at least there’s the Mother and Baby Unit at the Bethlem.  I’m lucky to live here.  Couldn’t go mad in a better place, really.  Bright side, eh?

It does, though, bring things into sharp and happy relief.  I never imagined my life would be where it’s at now.  Or that I would feel capable of having children, or even committing to another person, one who doesn’t worry about me topping myself.  Or that me topping myself is now a remote possibility, and not a concrete immovable object on the horizon.  To be sane enough to even organise the damn thing, to be sane enough to do it while going to university.  There is the trade off-medication, and I am going to need to have a serious discussion about it because the compromise is becoming too great- but all in all, I’m alright.  To be planning a future, even a rather scary one, is more than I ever expected.

(Although he is quite dangerous, judging by this video)

The Undateables: Using Disabled People As Life Lessons

(An unfinished post)

 

Channel 4 is currently showing, “The Undateables”, which, sensationalist, awful title aside, is a series about…

“People living with challenging conditions are often considered ‘undateable’ – this series meets a few and follows their attempts to find love”.

For one, considered undateable by who?

But the often-overlooked (or at worst, ridiculed) sexuality of disabled people is a subject worthy of exploration and commentary.  As is the near-universal desire for love.

Instead, we get an hour of, “AW BLESS!” complete with patronising voiceovers (and unnecessary ones, can’t they speak for themselves?) which treat the participants as little children, complete with angelic personalities and superhuman dignity, instead of the rounded, feeling people that they are.

The comments on Twitter aren’t much better...

The people on this program are so innocent!! 10 years and the guy left her cos she was in a wheelchair #heartless #undateables

Retweeted 443 times
Watching #undateables I hate that it’s called that! SO mean! These are literally the nicest people in the world! Shaine is a legend!

The #undateables bless them!

The #undateables is so cute

Can someone tell me why looks are so important in a relationship. Personality and trust come well before looks!

The people on #undateables are actually so sweet! Why can’t everyone be like them, what lovely people!

 

Do you know what’s worse than avoiding disabled people and laughing at disabled people (which people on Twitter are doing, too).  Using disabled people as “lessons” to teach you the true value of life.

Yes, there is a certain amount of adversity involved in disability.  But reducing people to that adversity, of “overcoming” (which requires no effort or thought on your part) of reducing them to one-dimensional dignified little stereotypes is as equally damaging as spite, because it still others disabled people.  It strips them off their humanity.  There are downsides to, “dignity”, which I have written about before.  Dignity, in some ways, disempowers people.  If all that is expected of you is to be dignified, when you are angry, when you are suffering, when you are just plain pissed off, you have erred from the side of sympathy.  Disabled people don’t get annoyed, don’t have flaws.  They are, “Sweet” and, “Cute”.  Like puppies. And they remind you of how lucky you are. Which is so nice of them!  But then again, they are nice, aren’t they? (Except the bad ones, you know, the ones who aren’t disabled enough but are on benefits anyway).

How would you feel if someone looked at you and all they saw in you was how bad their life could have been?  How would you feel if, by your very existence, you were supposed to, “represent” people? That, “life is cruel!” (but not to you?)

Please stop viewing disabled people as toys. Thanks.

I wish my dad was coming to my wedding

(Repost from my other blog, given some recent comments I thought this might help people)

I remember the first time I realised my dad wouldn’t walk me down the aisle. I was around 20. I can’t remember the date, the month, but I clearly remember that I was sitting on a bus, in the evening, leaning against the window with my fingers covering my eyes (the sunlight must have been weaving in and out of them, so it must have been summer). A woman got on, and held onto the pole, stared ahead, in that way you do. Something about her made me look. She reminded me of the girl in a Cancer Research advert at the time, one which was being broadcast with the wild abandon of supermarket commercials, between soaps, between documentaries, between seconds and minutes of days and weeks, and was unforgettable, and inescapable. And I had tried to escape it.

The girl in the advert was in her wedding dress. She looked every bit the cake-topper in her ordinary bedroom, in the oval of the mirror, with a painfully empty reflection behind her. She had tears running down her face, and she said, “My mum should be here”.

The advert, up until then, had annoyed me in the way that all cancer-saturation annoys me. I know that cancer is a horrific illness (my fiancé’s grandfather died of it on Boxing Day, the day we got engaged), I know the pain and despair it causes, I know it is awful and I know I am terrified of it, too. I know this because it is everywhere. Money is pumped into cancer charities, and cancer is the illness of bravery, of determination, of halo-dom. Automatic sainthood bestows upon the cancer patient, which, I believed, saccharined the reality of a terrible, destructive illness. All people who are ill are brave, because it requires bravery to live through any awful experience, through anything, really, through life. Whether in tears of laughter.

In my bleak little cocoon of grief (what is it like outside? I still don’t know), I felt resentment that people like me were not represented in these adverts. Or anywhere. No brave adverts for alcoholism and drug addiction, for mental illness, for the less glamourous, not-so-”blameless” (how horrible a concept) battles that steal our loved ones every day and which leave the children, wives, husbands, mothers, fathers and friends silent under the weight of shame, of blame themselves (“couldn’t you stop him drinking? Put him into a hospital or something? Five children and it’s still not enough? What kind of children are you?”). The well-known by now turn-away of the face, the lowering of the gaze, not of death, but of a socially unacceptable death. One that does not proffer forth, “Ah, how brave they were! How wonderful. So much a life lived, and now the suffering is ended. They fought a battle”, but a defence, a, “But he was good. He was. I know he was. I remember it. Inside, he was good. He wasn’t himself- it wasn’t his fault”. The scrabbling for old memories, good ones. From childhood, maybe, or a glimpse, one day, in between drinks, of who he was, who you loved, who you would miss so desperately even when you hated them sometimes, and even when they so clearly hated you sometimes to, and even when you both said as much. And cancer patients are alcoholics too, have wasted, desperate lives, and die young. There is no sainthood, everyone is the same, everyone is human. A kind of death doesn’t make a kind of life. But so it is for the alcoholic, the drug addict, the mentally ill. Because they were so, then they must have been so.

And moreso than silent, invisible. I wanted, so desperately, to see someone represent my experience. To do it publicly. Please, please don’t let me be alone. I want to talk. I want someone to say something about what is happening to people and to the people left behind (My wonderful friend Brendan, who battled alcohol addiction too, died the year after my dad. He was the person who understood the most and I had wanted to shock him with my grief- it never works, it didn’t work with my dad, either. He saw people in his group die, and then he did anyway). It is why I wanted to write a book- not just one about mental illness (of which I have little to say about my own anymore) but about the experience of growing up with an alcoholic, with another who was mentally ill (It was like having half a parent most of the time. They ebbed and flowed, sometimes, one could be capable, one not, and vice versa. Sometimes they both were, and those were the best of times). Two parents who you love but who are flawed so deeply, but you love. Of not being a Jeremy Kyle caricature nor a placid professorly drinker, of being taught to read by someone who had misspelling on their gravestone, all too soon.

So this woman on the bus, her face like the advert girl. And I thought about it, her standing in front of the lonely mirror, and realised that my experience is there. It is there because I, my siblings and millions of people have lost a parent- forever and ever- and lost the futures we had in our hearts for ourselves, and for them. I had always imagined my dad walking me down the aisle (and probably getting drunk and ruining my wedding, but at least being by my side, genuinely proud and composed, for a few minutes. Like the childhood memories of making Toasted Toppers, it would be worth it for the rapidly fading memory of his true self), I had imagined smiling at him and getting one of my decade-kisses (only 3 times, not out of lack of love, but he was not that kind of man, he was shy) and then being released by him.

It struck me with shuddering, sickening force that it wouldn’t happen. It would never happen, it was gone, gone and could never be taken back. I had a new future and it was one without my dad. Without my children having him as a grandad, without my future husband meeting him (he did, when he was 18, and my dad baldly asked him, “Do you love her?”, to which my future husband replied, “Yes”), without arguments, without tense Christmasses, without shouting, without anything at all. He was gone. Was he even my dad anymore? Do they exist as parents, if they are dead? When they are 47 and I have friends older than that, who are alive?

I wanted to be sick. I shoved my head against the window and let tears roll down my face, too immobilised by shock and grief to even move, to get off the bus, to spare myself the embarrassment. When I finally did it was with fingers clenched in and drenched. I walked, I don’t even remember where- nowhere dramatic, probably home- trying to push the thought out of my mind, as I had done so many times before. But it wouldn’t go, it kept floating back, the awful reality of what had happened, that I had to accept and couldn’t bear to.

And now it is almost six years later. I’m getting married in August without my dad. Hopefully my mum will come, hopefully Robert’s dad will come, too. My little brother is giving me away. We’re having alcohol and I wonder if that’s like putting out lines of coke for the drug addict funeral. Should I raise a toast to my dad? Is that like saluting the Grim Reaper with a scythe?

But I know alcohol didn’t kill my dad, and that alcoholism did.

My dad should be here.

2011- that was the year that was

2011 was a good year for me. It was the only year in my adult life where I haven’t had some sort of mental health crisis. I even got past the dreaded October. October seems to throw me into storms, unreasonable storms that appear from nowhere. But not this year. I did spend a lot of this year waiting to get really ill. Or nearly making myself so by going over the past for no real reason other than that’s what my brain tends to do! But I think I’ve kicked that, too. I’m quite excited about the future.

It wasn’t perfect. January was sent from hell, but the year improved as time went on. When I did get stressed or depressed, it was for entirely understandable reasons. It was quite a busy year! For example…

1) I was discharged from the community mental health team after 4 years

2) I came off benefits, after four years

3) I finished my course at Birkbeck, which made me feel like a Real Person again

4) I got my first job in 4 years

5) I started university

6) I got engaged to my very first love, and my very last.

7) I didn’t write a book. And my lovely agent has (quite understandably) stopped replying to my emails, so it may not happen. But, as the above testifies to, 2011 was the year of getting my life together, rather than staring at my naval. I found it incredibly painful to even try- maybe this year, if I can find another agent!

8) I’ve been quite quiet this year. Undoubtedly lost my position as one of the more vocal mental health bloggers. But I had forgotten that I actually DID STUFF. I still did write a fair amount, did some performing, did things with Rethink and got involved in activism and was on radio.

In 2012, I hope to do more writing, more work with charities, more STUFF, not fail my placements, be more sociable and get married. Hooray!

So, that was 2011. How was it for you?

Hooray, I’m getting married!

I keep forgetting I have this website! So I’m crossposting from Secret Life…

Christmas was good. I got engaged! Christ, I feel like a proper grown up now.

Robert came to my family’s for Christmas, which meant the unromantic setting of dog wee in the kitchen (he is a very excitable boxer dog, who kept trying to shag him). But the more romantic setting of introducing Robert to my extended family and getting fat together on the sofa with the Eastenders Christmas special.

On Boxing Day, Robert was rather adamant that we go for a walk in town. He was very nicely dressed- unusually so for a tramp like him- so I followed his lead and dressed up a bit, too. He was quite insistent in walking to the River Lagan, as when we were first together as teenagers we used to go for walks there. Then we went to this little bandstand area, in blue lights, little steps, a bench. He gave me a kiss, extremely nervous. I realised what was happening and asked to sit down, and he knelt down in front of me. I’d gotten him this notebook he loved, an old, leatherbound one, which I said he had to put something lovely in as it was too nice for hastily scribbled swearwords. He pulled it out of his pocket, started to read me something he had written, and asked me to marry him. When he took the ring out I said, “I bloody knew it!” as he had been somewhat dropping clangers. But it was lovely, all the lovelier really as it meant I was as nervous as he was.

Anyway, we kissed and walked back. On the way across the bridge, a woman barked, “Let me see the ring!” and I thought I was being mugged. She worked there, and the whole thing had been caught on CCTV. Hooray!

The ring did not quite fit, so we choose a new one together, a pink sapphire, which is beautiful. The ring which doesn’t fit me is now his wedding ring, which I’m wearing around my neck on a chain, and will put on his finger on our wedding day. He gave me the new ring at the bus station where we first met, when he came to visit from London when I was 14 and he was 18 after eight months of phone calls and letters, and where he looked all shy and pretty in is suit and make up and took my hand, and I pulled it away because I was dissolving with nerves.

Afterwards we rang my sister who came into town with my brother and we had a bottle of Prosecco. We want to get married in August as it’s the only time we have free. I got a bit excited talking about it all but truth is, god knows what will happen. We are completely broke and neither of us want a big do. We don’t know if we will have it in Belfast or London yet- Belfast would be good for my family, but for the ceremony I really only want a very small number of people there. We are not traditional, and we’re not formal. I asked my sisters and Robert’s sister to be my bridesmaid (and my big sister to be my maid of honour!), which is one of two concessions to tradition we’ll give as they mean a lot to me. But they can wear what they like! Since my dad obviously can’t give me away (being dead and all), my brother wants to give me away in a leopardprint tophat and we are finding uses for the battery powered LEDs I have, so. We’ll see. A party afterwards would be nice but the whole thing boils down to the fact that we just want to marry each other and have a day with people we love! No white fancy bullshit!

(This stuff is already making my head spin. I want my London friends at my wedding and I can’t afford hotels in Belfast, but my family cannot afford to help AT ALL so it’s all on us. Also, Robert’s mum can’t take any time off in August so she wouldn’t be able to come to Belfast for a wedding. AAAAAARRRRRGH).

It was a bittersweet day. When we came back to my mum’s, Robert got a phone call informing him his grandad had died. We knew it was going to happen and the love his grandparents had is what spurred him on to propose. His mum told his grandparents- his granny was delighted, and his grandfather (who was a lovely man) died knowing, so she said that was nice. But it was kind of heartbreaking. We had a big cry- about him, about the possibility of losing each other and the inherent madness involved in spending your life with someone, and in being in love. It is strange to be engaged to Robert, after our messy, complex history together. I have loved him since his first letter dropped on my door mat when I was 13. He makes me happier, more comfortable, more myself (as myself as I can be drugged to the nuts) than I ever imagined I could be. Now we are getting married I feel the pain of losing him one day acutely- but it’s worth the life we could have, I know. Then we went to sleep.

We went to my friend Stephen’s the next day, Robert rocking up drunk as he sold his Dulwich Hamlet scarf in a pub for 4 drinks and £12. Stephen and Aislinn’s house is fairy tale beautiful, and we couldn’t believe someone we knew lived there.

We played a board game called, “Us and Them”- about the Troubles. It had green cards with questions about Catholicism on them, and Orange cards about protestantism. There were also Innocent Victim cards, with questions like this:

No questions about punishment beatings, though, bollocks.

Back in London now and it all feels quite surreal. But I keep looking at the ring. I’m still happy, so is he, so, all good!

HOLY SHIT SHINY ETC!

My family, and Robert and Freddy would both be even if we never got married. But it’s nice to make it official.

And I start my placement on Tuesday, argh!

The Last Goodbye: Comedy Fundraiser for Mind, in memory of Mackenzie Taylor, December 15th

In honour of the comedian, Mackenzie Taylor, who died last year, there will be a comedy fundraiser in aid of Mind on December 15th-  Here are the details:

We are putting on a comedy night to celebrate his life and raise money for MIND, It would be wonderful if you could all come down a support the night.
The Laugh Goodbye – Comedy Fundraiser
Date December 15th 2011
Time 7.30 -10.30
A cracking comedy line up to celebrate the life of Comedian Mackenzie Taylor and raise money for MIND.
Line Up  Tom Wrigglesworth, Kevin Shepherd, Joe Wilkinson, John Gordillo, Holly Walsh, Richard Sandling and Tony Law
Cost £10 in Advance £12 on the Door (all proceeds go to MIND)
Venue: New Diorama Theatre
Box Office Number:
+44 (0)207 383 9034
Nearest Tube: Great Portland Street/Warren Street/Euston Square
Bus: New Diorama is directly on the following bus routes: 18, 27, 30, 88, 205, 453, C2, N18

Many Thanks

Two new pieces by me elsewhere

Hi chaps, I have been writing, but not here! I have been blogging about mentalism at:

http://thesecretlifeofamanicdepressive.wordpress.com/

and there are 2 things I’ve recently written floating about. The first is an article for One in Four on working post-mental-illness. (Which made it into the Guardian’s society daily, hooray!)

Working it out

After four years of treatment, three years on benefits and two interviews, I finally found myself one job.

I thought I’d never have a job again. My employment history is fractured at best. In attempting to work when I was ill, I made that situation and my health worse. Claiming benefits took a long time, but when I was finally successful, it gave me the space I desperately needed to get well. It gave me time, above all else. Time to sort out my housing, time to attend appointments, time to process what was happening to me and learn to live with it.

After three years receiving benefits, I realised I was no longer ill enough to justify claiming them. At the same time, I lost my entitlement to the support that came along with benefits and therefore lost all help toward getting a job. For the first time in four years, I was absolutely on my own. At that point, though, I felt that was where I was ready to be. Well, sometimes. At other times I almost crumbled with the fear that I wasn’t ready for work, that I wasn’t prepared for life without stabilisers.

And a piece with the mental health campaign, Time to Change, on stigmatising yourself.

used to be a very prolific blogger on the subject of bipolar disorder. That was, until I was diagnosed with borderline personality disorder. Bipolar disorder, through the visibility of sufferers such as Stephen Fry, could be construed as one of the more acceptable mental health conditions to have. It is associated with great creativity. Borderline personality disorder, however, is a less acceptable condition to have, if anybody knows what it is at all. It is portrayed in the media via the prisms of films like Fatal Attraction, with the terminally attached Glenn Close cutting her wrists as she waits for the disinterested Michael Douglas to call. Within mental health services, its image fares little better. In this study, 84% of mental health professionals said that people with borderline personality disorder were the hardest client group to deal with.

I hope you like them. And hooray for feeling able to write again! It’s been months!

Save the NHS.

Edit: I wrote this yesterday and was right to feel hopeless. The Lords have declined to submit the Bill for further scrutiny.

This is a quick, somewhat toothless post as I feel quite hopeless about this bill, as a person and a student nurse who didn’t sign up for this.

The Health and Social Care bill passes to the Lords today. On Sunday, thousands of people assembled on Westminster Bridge in protest at the widely unpopular bill that is without mandate and which will privatise by stealth the greatest asset the public has. I love the NHS on principle- I firmly believe that healthcare is a human right. It is one that should be available to everyone, regardless of where they live, what they earn or who they are- from the cradle to the grave.

The protest was great.  It was populated by doctors, nurses, student nurses like me, the public, the left, the right.  But it received scant media coverage and had largely broken up by 5pm. I wondered if people there felt as I did- impotent. This government has steamrollered policy through- from welfare reform to tuition fees to this bill- with little consultation and against much opposition. Being in front of the steamroller and getting flattened anyway seems to be making people- myself included- feel increasingly disillusioned. Especially after the Hardest Hit march, which got nothing at all. No coverage.

Frustrated at being unable to express my own feelings beyond showing up, I pulled up my sleeves and scrawled this on my arms.


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Even in the 4 years I was receiving mental health care I saw the cuts take effect, with a lot of the slack being left to charities. My care wasn’t just good because of the great, but dwindling staff.  It was because of where I lived.  There are huge disparities in care in the UK and particularly mental health care.  No continuity, no accountability, and a lot of the time, no availability.  I was one of the lucky ones.

Anyway, impotent as I feel, there is stuff to do.  You can write to a lord expressing your feelings here on the 38 Degrees website. 

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More after the jump. Continue reading Save the NHS.

How To Be Alone

This is an absolutely beautiful little video.  And close to my heart.  I spend most of my time alone.  The nature of living with a night shift worker means there are seven days in every fourteen when I am alone.  I don’t see people other than him so much.  Not much of a social life here.

There are times I feel very lonely.  That’s exacerbated by the internet- of having many connections but few with whom I truly connect.  With someone always on chat but never on the phone.  With 600 tagged photos of faces I never see in real life.  Sometimes I do feel very lonely.  I feel bad to admit to it.

But being alone. The older I’ve grown, the more I enjoy my own company.  I realise how much I value it when it’s taken away.  I get a little image of myself sitting here, drinking a coffee, being alone, and I yearn for it.  When I was working I was late home every day because I liked to look in the shop windows and run my hands through the vegetable racks and sniff the tomatoes.  I would rifle through my pockets for the change for tea.  6.30…7.30…head still in the paper.  I am used to getting looks for eating alone.  A £5 meze plate, my favourite treat, with just me eating and people taking my empty chair.  No, no-one is coming.  It’s just me.

In a way, I am halting about making new friends or polishing the friendships I already have because I like to be alone so much.  I like the space to think.  I feel bad admitting to that, too.  But I’m working on that.  I need to make the time for people.

Anyway, look, this is so lovely.

If you are at first lonely, be patient. If you’ve not been alone much, or if when you were you were not okay with it, then just wait. You’ll find its fine to be alone once you’re embracing it. We can start with the acceptable places, the bathroom, the coffee shop, the library, where you can stall and read the paper, where you can get your caffeine fix and sit and stay there. Where you can browse the stacks and smell the box, your not suppose to talk much anyway so its safe there. There is also the gym, if you’re shy, you can hang out with yourself and mirrors, you can put headphones in. There’s public transportation, we all gotta go places. And there’s prayer and mediation, no one will think less if your hanging with your breath seeking peace and salvation. Start simple. Things you may have previously avoided based on avoid being principles. The lunch counter, where you will be surrounded by “chow downers”, employees who only have an hour and their spouse work across town, and they, like you, will be alone. Resist the urge to hang out with your cell phone. When you are comfortable with “eat lunch and run”, take yourself out to dinner to a restaurant with linen and silver wear. You’re no less an intriguing a person when you are eating solo desert and cleaning the whip cream from the dish with your finger. In fact, some people at full tables will wish they were where you were. Go to the movies. Where it’s dark and soothing, alone in your seat amidst fleeting community. And then take yourself out dancing, to a club where no one knows you, stand on the outside of the floor until the lights convince you more and more and the music shows you. Dance like no ones watching because they are probably not. And if they are, assume it is with best human intentions. The way bodies move genuinely move to beats, after-all, is gorgeous and affecting. Dance till you’re sweating. And beads of perspiration remind you of life’s best things. Down your back, like a book of blessings. Go to the woods alone, and the trees and squirrels will watch for you. Go to an unfamiliar city, roam the streets, they are always statues to talk to, and benches made for sitting gives strangers a shared existence if only for a minute, these moments can be so uplifting and the conversation you get in by sitting alone on benches, might of never happened had you not been there by yourself.

Society is afraid of alone though. Like lonely hearts are wasting away in basements. Like people must have problems if after awhile no one is dating them. But lonely is a freedom that breaths easy and weightless, and lonely is healing if you make it. You can stand swaffed by groups and mobs and hands with your partner, look both further and farther in the endless quest for company. But no one is in your head. And by the time you translate your thoughts an essence of them maybe lost or perhaps it is just kept. Perhaps in the interest of loving oneself, perhaps all those sappy slogans from pre-school over to high school groaning, we’re tokens for holding the lonely at bay. Cause if you’re happy in your head, and solitude is blessed, and alone is okay., Its okay if no one believes like you, all experiences unique, no one has the same synapses can’t think like you, this be ?, keeps things interesting, lifes magic things ?, and it doesn’t mean you aren’t connected, the community is not present, just take back to you get from being one person in one head and feel the effects of it. Take silence and respect it, if you have an art that needs practice stop neglecting it, if your family doesn’t get you or a religious sect is not meant for you, don’t obsess about it. You could me in an instant surrounded if you need it, if your heart is bleeding, make the best of it, there is heat and freezing be a testiment.

Remember me? I have a Facebook page, come and play!

It is here:

 

http://www.facebook.com/pages/Mentally-Interesting-The-Secret-Life-of-a-Manic-Depressive/

 

I intend to get back to writing here shortly- unfortunately my brain has gone wonky in the past month or two making it a bit difficult.  Doh and indeed DURRR.

I was also at the Block the Bridge, Block the Bill protest against the Health and Social Care bill which will remove the duty of care from the state and sneak-privatise the NHS.  I’ll write more later as I have some photos, but you can look at me Twitter <over there and read about it on the Guardian here. 

 

 

 

 

Site is borked

Bear with me, the whole site was reinstalled so everyone who had a favorite it’s gone. My lovely webmaster worked hard to get the site back. I need to sort out other stuff so yes!

I'm a Student Mental Health Nurse!

Hooray! And I’m already knackered!

It was my first day proper today. This meant a lot of nervous laughter and slideshows, which thankfully weren’t subtitled with inspirational messages and soundtracked by M People, as it did for Robert at his university.

I have been having the lurching, “OH BLOODY HELL WHAT AM I DOING?” feeling in the night for weeks. But sitting in class today and smiling at the phrase, “forensic mental health” reassured me that my decision may not have been so bad after all. Having signed my life away for three years, I guess time will tell. It’s going to be incredibly weird being on the other side of that keycode door. I remember longingly watching nurses fiddle with it and wondering… what’s behind there? I imagined old mummified men hanging from the plaster ceiling like bats, the ones who couldn’t be cured. I’ll find out the answer soon enough, and I strongly suspect it is filing and biscuits.

I have Mondays and Tuesdays off until January so I’m going to try and use (and force) as much of that time as possible to write. Not just essays and rambling, panicked notes to my tutors either. I need the money, if anything. I have approximately £buggerall to live on after I pay my rent. Going on the game is against the NMC code of conduct as far as I’m aware. (I will also not be blogging about my course, sorry!)

Anyway, there you go! Who’d have thunk it four years ago when I first started writing to you lot, eh? I’ve joined the dark side. Now in a few years when the next generation of mental health bloggers bitch about their bastard nurses, it could be me they’re talking about!

I absolutely promise not to be a horrible nurse. I’ve had my share, and I’ve had my share of absolutely brilliant ones. I would like to be the latter if the NHS isn’t absolutely savaged and completely privatised by then.

I Can't Write

Hi chaps. Since I last spoke to you, London burned, I turned 26, I had my disabled students’ assessment (ah, a side of you you abandon, and then when you need to revisit it you realise how much the glove still fits), I went to Madrid and to the pub for the first time in many months. Continue reading I Can't Write

Download Do's and Don'ts… BBC Radio 4 play online! Wahoo!

(cross posted!)

People have often asked me for a copy of “Do’s and Don’ts for the Mentally Interesting”- the Radio 4 play based upon my blog.  I often can’t help due to having one CD copy meself, and that’s it.  It’s now available for download!  You can download it at Audiogo, and you can also get it via iTunes.

There’s a charge, but by downloading it for your listening pleasure, you can keep it and I will also get about 1p! If 17 of you download it, it means I can buy a Fudge, the king of modestly priced chocolate!

It’s pretty weird that it’s out there now, but I hope you like it!

GIVE ME BLOGGING IDEAS!

I have absolutely frig all to say for myself, but I want to write something!

Any ideas? Anything at all!

Education made me feel like a Real Person again

Ah, I’ve been very quiet here recently, sorry!  Trying times at this end, which doesn’t make for great blogging!

Yesterday was my final class at Birkbeck.

Birkbeck is also clearly the best part of University of London. It has an owl in its crest.

Anything with an owl is best.

I have two essays to hand in and got a little extra time.  Should I do well in those, my marks overall will be in the 70s-80s%.  Hooray!

I surprised myself by getting the highest marks in my biology and physiology module.  I expected to be bored and struggle with it, but I found it fascinating and easy.  I love my textbook.  I had forgotten how much I loved sciences.  I’d forgotten that I used to be a bit spoddy and that as a child- aside from my papers and pens- my most beloved possessions were the telescope and array of extremely dangerous chemicals my dad stole from his work in a physics lab.  I had forgotten, and it has been wonderful to remember again.

I’m going to miss the hell out of the place.   I’ll miss its crap lifts, miss the musical Christians outside SOAS who try to entice you with free tea, the smell of weed in the air, people reading on the sparse grass, my lovely classmates and my wonderful tutors.   I also can’t thank my last social worker enough.  She fought for me to get the budget to study.  She applied for it, it was accepted, then it was wrested away from me.  I was told I would have to fund it myself, and I couldn’t.  I faced being kicked out and she furiously caused a fuss so my funding was returned to me.  So hooray for her, too.

It has changed my life.   I now have the qualifications to study a degree which will give me a career.  Before that, all I had was benefits and a destroyed CV.   As much as I love to write, will always write, and will always be a writer, I never expected to be able to make a career out of it.  (I do get odds and sods).  This is a pretty awesome plan B.

Studying has  made me feel human again.  It got me into the world.  As disorganised and rubbish as I am, I loved sitting with my laptop reading journal articles, I took pleasure in moaning about deadlines and essays.  They are human and ordinary things when I had spent four years in the wilderness, with nothing to talk about other than what was in my own head.  My own life.  And now there are ideas, too. Days, things I did.

I had, until recently, scorned the idea of a university education making a person more intelligent.  It used to irritate me when people crowed about their superiority to the non-educated plebs.  The value of being back in education isn’t just what I learned, but how I learned it.  It has taught me new ways of thinking.  To be more enquiring, more open minded.   When I first started writing the Secret Life, I was twenty one and I had an incredibly dogmatic view of mental illness.  In my own case I steadfastly resisted any idea that I had control over it.  I viewed it as a biological process and nothing more.

Learning to think more critically has helped me recover from being unwell.  I realised I had a lot more control over it than I thought.  That I didn’t have to be defined by it, as I had let myself be.  And I was partly defined by it because it was all I had.  I was a person with mental health problems who wrote about them and who campaigned about them- that’s all I was, and all I did.   I have other stuff now that I think about, read about, care about, other things I do.  It is very freeing.  And it is right- I could not have gone into the profession thinking like that.  It would have damaged my patients.  It will make me a better nurse.

It’s also made me wiser to my blind spots.  I need to listen more- I’d get quiteoverexcited in class!  I’m good at academia and I’m friendly, but I need to work on my awkward social skills.  I need to be better with timekeeping (and working full time has helped that- I’ve been surprisingly good), I need to become more organised.  But I did better with it all than I thought I would.  In that I got through it at all!

Next up- university, possibly.  There’s a chance I won’t be able to go this year for financial reasons, but we shall see!

Yay, though!  I love yer, Birkbeck.  Goodbye!

Please Recommend Short Books and Audiobooks!

Hello! Could people please recommend me some short books and places  to get audiobooks?

I used to be the kind of person who could easily devour four books a week. For a few reasons, I no longer am that person. It’s partly health related- years of my brain being a bugger and the medication for it has messed me up cognitively. These days, as well as I am, I am usually a bit dulled and, “Eh?”  I can be a wee bit foggy, my memory is arse and now find long pieces of text frustratingly difficult to read and concentrate on. The only books I can read are ones I have read many times before.  I keep dragging Robert’s inpenetratable tomes into the bathroom in the hope that a particularly vicious bout of the runs will force me to sit down and read them.  Alas, not only have my bowels failed me but my brain has, too.

Another reason is just cultural- Monsieur Internet has really spoiled me and I, like many people, am used to reading short texts rather than long ones. If I have time to kill I can just whip out my phone and read Cracked, or find out who That Fella Was In That Film.  (It was Yer Man).

But it is from being bored.  It is mental chewing gum.  You don’t get lost in HTML the way you do a book. Long novels are very daunting to me but I’d like to start slowly with shorter ones.

Audiobooks are good, too, as is non-fiction.  Interesting stuff like sociology and feminism and health and culture interest me a lot.  I’ve recently downloaded one- it was my second favourite childhood book, “Which Witch?” by Iva Ibbotson, which, as I recall and found it very comforting to rehear, was read by Prunella Scales.  I recommend it, it’s still a wonderfully warm, witty, clever and extremely English book.

Anyway, recommendations welcome! I like most things!  Thank you!

May Contain Nuts in Manchester!

I will write this quickly as ongoing ear infection means I feel like I’m going to vomit out my nose.

Anyway, for those who are interested, the gig in Manchester! Sorry, Salford.  I found out before I got there that the distinction is very important.  I can understand that.  I have been known to snap a full grown man over my knee for telling me I’m from Lisburn.

It was for the 25th anniversary of Salford Mental Health CAB, as I mentioned before.  I didn’t expect it to be so formal; I blanched when I saw people were sitting down, around tables, with tablecloths and balloons.  That is lovely and great, but I quickly scribbled out the, “fuck” in my stuff!  Although those that were there included service users, so that was all I changed.

I was there with Company Paridiso, who have been running the, “Warning: May Contain Nuts” programme.  They ran workshops for people with mental health problems, comprising poetry, performance and music. In fact, they have a snazzy book that you can buy featuring said material (and my own).  You can go here and contact them!

My involvement with them came via my blog.  I have never done performance before and I did it for the same reason I do most things- because they asked me to and I’d never done it before!  I also participated in their radio stuff, firstly on BBC Radio Berkshire, which comprised of a quite wonderful week of very compelling, interesting, funny and sensitive programming on mental health.  You can listen to all of those shows again here.  I would recommend you do so, they’re geniunely great.

Then with BBC Radio Sussex.  This comprised of a shambles and my most fist-chewingly hilarious experience on radio ever.  The fella- whose name I now forget but he presents the breakfast show-was busy talking about Anthea Turner having a television in her bathroom.  They were friends, see.  And then he fielded a call from the ex-Mayor who referred to David Blunkett as, “that blind chappie”.  At this point I was stuffing wads of loo roll into my mouth to stop myself from howling with laughter.

When he interviewed me, his first question was, “So, manic depression eh?  That’s been really sad one day and really happy the next isn’t it?  That sounds great!”- a question delivered with the confident buoyancy that only someone who had given the Wikipedia article the most cursory glance could muster.  I corrected him and he proceeded to deadpanly read my own material at me, ending with a forced chuckle.  I then had to read the same material.  He then tried to be serious, giving me his earnest, serious face while he brushed over suicide.  I tried my best! After five minutes of me texting under the table going, “OH MY GOD WHAT THE HELL?” he wrapped it up with, “It’s a Kind of Magic” by Queen.  Incredible!

So through them, I have met lovely people (including John Hegley, who is a bit of a hero, and the most beautifully humble, gentle man) and done excellent terrifying things such as, well, live readings of my own stuff.  Argh!

So on Friday, I was there with them, them comprising that day of Jon, who runs Company Paridiso and livesonaboat, Nash (who is a service user, like myself which I sometimes forget!, and who has been in prison and is now doing some bloody wonderful and inspirational stuff) and Amy’s Ghost- or two of them, the ethereal, want-to-hug-her-all-the-time, ridiculously talented Amy, and her husband and guitarist for the day, Adam.  And here we are with the Mayor of Salford and his wife!

Smiling through the bling envy- me, Amy, The Mayor Of Salford, the Mayoress, Jon and Nash.

Continue reading May Contain Nuts in Manchester!

Warning: May Contain Nuts in Manchester! Will I make a dick of myself again?

WILL I?

Anyway!  Warning May Contain Nuts- or me, Amy and Jon this time- are off to Manchester on Friday to do a gig for the glamourously named Salford Mental Health Services CAB!  It’s their anniversary.  The mayor of Salford will be there in his bling.  I will be saying fuck and shit and talking about suicide. Oh dear!

This was the first time I did this in my entire life:

So, wish me luck this time! All of the above in the video kind of applies to ESA medicals, too. I’ve only ever had 2 medicals. One was for DLA- I was at the time barricading my door with guitar amps, taping the locks and my cupboards because I thought people were going to get in and kill me. Their response was to send someone out to hit me on the knees with a wee hammer. The second time, the medical lasted 15 minutes before the quite lovely doctor declared me fucked and then declared me doubly fucked when she realised I didn’t have enough NI contributions to claim benefits. She tried to sort something out but it was not to be! I do remember those experiences with a smile on my face though.

I graciously have tomorrow and Friday off.  Tomorrow is a presentation in college and some last minute writing.  Friday is a train to Manchester and then coming back to do more school work.  This weekend I intend to sit in my pants eating biscuits and then spending Monday morning picking off the crumbs and feasting upon them.

Argh!

In other news, it’s been a day of people being completely lovely. An extra day off, a free pint, two lovely emails and some messing around with the modem so I can watch the Apprentice. Thank you, lovely people!

Happy Father's Day

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How To Be Normal In the Real World

Ever since I’ve been thrust back into the Real World, I’ve been trying to work out how to be Normal.

Now, having been out of the Real World for almost four years (and was ejected due to being mad), I have a lot to learn. How do normal people talk? What do they talk about? How do they look?

I’ve been seriously out of practice. I have to break habits I’ve had for years.

My field trip has so far lasted four weeks (or indeed since September last year for college, but that’s one a day a week, where you mostly sit and listen. So let’s say it’s lasted twelvety weeks a liger). In this relatively brief period of time, I have discovered things about the Real World that I had forgotten in my time out of it.

1) Other People You Have to Interact With.

Before the internet, our best friends were our next door neighbours, our colleagues and the people we met at university. With the latter, there was some form of filtering. After all, the people you are on a course with have at least the interest of that subject in common with you. But you grew up with the people in your street. You spent your teenagehood with them, even if you were, on many levels, fundamentally different. You were forced to speak to the people in your immediate vicinity, or else you would be curled in a corner, talking to your sunflower (more on that later).

Nowadays, we have the most select filtering of all- social networking. You can add, delete and block people from your life. Defriending on Facebook is serious business. Whereas you may chuckle and say, “It’ s just deleting somebody from your profile”- well, if that person has come to exist in your Real Life, then you have some explaining to do.

If you grew up with the internet as I did, then you can avoid talking to everybody in you immediate vicinity. You can still, of course, talk to your sunflower (more on that later). But you can also search Yahoo for people who like, say, er, ahem, manic street preachers and voila! You are no longer alone.

You don’t have to do the awkward talking to actual people to make friends. You can do it online, and you can keep them online. Your friends may never meet each other, and in the sterile space of the internet, you can show and hide what you want. Likewise, you can get a quick gauge of people by browsing their profile details. “MUSLEMS OUT OF ENGLAND! ENGLISH FOR THE ENGLISH!!” listed as a, “like”? Avoid!

Interests are a shorthand for values. At least, this is way I treated them when I was growing up. “Values”, as a teenager, were amorphous jellyfishes that pulsed and shivered. I forged an internet collective of people with similar interests to mine in the belief that we shared similar values. If someone likes the Manics, then they must be left-wing, fond of eyeliner, vapid, prone to self harm and sexually curious, just like I was!

But as you get older, and your values change, then the collective dissolves. You shimmy away from each other. You delete that friend, and that’s that. Because you’re not in their immediacy, you don’t have the, “Mumble mumble late for bus” thing when they’re chasing you with a rolling pin asking why you’ve not deigned to take their calls anymore. I mean, how many of my friends even have my number? How many of their numbers do I have? (Shamefully, the last time I spoke to a friend on the phone was… I can’t remember. But I generally hate the phone and don’t even ring my family much).

With Twitter, you have followers. With Facebook, “friends”. With blogs, readers. All approximations of the same thing.

It’s no secret! I am socially phobic (and the last person you’d expect to be if you met me). I am intensely anxious in social situations and it’s actually become worse, not better, over the past months of no-mentalness. I used to be a GREAT deal more social than I am now. My default, goddammit, is anxiety, with no little buffer of hypomania to sort me out in the short term. I am prone to apologising for- well, absolutely bloody everything because I feel like I sound stupid.

I like people. I am not a cynical person who feels that I and I alone am worthy. I don’t like unkindness and as I’ve grown older, I have come to find bitching very distasteful and I avoid it.

I like people a lot and I dislike people very rarely. Because of this, I am sometimes offputtingly over-eager, or standoffishly rude. In general, I’m friendly, but my eagerness is construed for neediness rather than awkwardness, and my awkwardness translates as rudeness.

I am very aware of what I say, and that makes me ramble, which again, makes me nervous. I avoid social situations. It takes a lot of coaxing to get me out of the house, and, if you do, I’ll drink my balls off to cope with it. Part of the reasons I got involved with mental health activism was to challenge my fear of social situations. I got involved in stand-up for the same reason. And I’m fine transiently- I’ll talk the hind legs of a stranger in the street, because I will never see that person again.

The internet is a god send for me. It’s how I found my friends, and it’s how I’ve managed to never really see hem. Without it, I wouldn’t have anybody to “talk” to (except for Robert, as I’m pretty cool and okay in romantic relationships, and my sunflower- more on that later). I used to be good at MSN and those kind of chat services, but even that became too immediate for me. I keep people at an arm’s length- an arm, a mile, a country, a continent. By avoiding social situations, I have also avoided transport and services. I do have friends, and people I like and who like me, but I am the best Excuser-Maker-Er in the world. I could just dodge everyone and everything if I felt like it.

Until four weeks ago.

On my first day at work, Robert- bless him- took me to the train station. I wanted to be on time so I avoided the bus. The bus, by the way, is easier for the social phobic because you can get off it or open a window. They are also more frequent and less packed than the train I get to work. Hooray!

I had to buy a ticket. There was a machine for that. I stood at the platform, looking around. It had been three years since I stood on a train platform at rush hour. Ordinarily I had the luxury of disparate little wastrels like myself blessing the emptiness of the carriages with loud MP3 player and long, louche, demined legs.

It was a throng. A bomb. People. All dressed up in similar gear- work wear. It’s a thing, you know.

I got on the train and had my face pressed up to someone’s armpit. That’s fine with me, I like armpits. Armpits like my face. Getting off the train I actually found it a little thrill to be amongst the crowds, to be camoflaged, to disappear. I felt tall and proud walking amongst the living.

Colleagues. I have colleagues now. And they are, without exception, absolutely lovely. But I have them, and I didn’t pick them. I know bugger all about them except for what they do for a job. (Unfortunately, none of them come in wearing t-shirts emblazoned with, “I AM NOT A MISOGYNIST, I AM NOT A BIGOT, I LIKE CATS, ASK ME ABOUT CATS”). With gentle probing I could probably find a lot out (I am weirdly good at this, which is one of the reasons I want to be a mental health nurse) but I daren’t. And wouldn’t, because it’s work. You have to act all work-like. Stick up your bum and a zip on your mouth. That’s one I’m learning.

I share my desk, my day, and, if I’ve had a few cups of coffee, my deliberations on the fuckery of Excel with people I didn’t choose to. And neither did they. We are thrown together. I can’t run from them. I can’t hide from them. If things are getting a bit awkward, I can’t close the chat window. If I don’t want to respond to a question, I can’t pretend I didn’t read the email. I can’t hang up, I can’t avoid them. I HAVE to interact. I have no choice.

There are these people everywhere! Did you know that? They’re EVERYWHERE. On trains, in cars, in parks, in work, probably even under your bed right now. People that you have to interact with, on some level. And even if it’s not a meaningful level, it’s a start for someone like me. And if I’m wrong, you should correct me, because…

2: Criticism only exists in the Real World.

I used to be really bad at dealing with criticism. I’m a sensitive soul, and I’ve also been prone to acting like a complete knob at points in my life when I was either a) mad or b) acting like a knob. The mad part was partly what made me so bad at dealing with it. And being a mad teenager. I thought I was better at dealing with criticism these days.

Then I realised- when was the last time I was criticised?

I’ve had many a twat troll me on my old blog. I was rarely hurt by that. I’ve had many nasty comments and emails, and they deflect off me. The reason is because although they are attacking one aspect of me, it doesn’t hurt because it’s not personal. Okay, so calling me self pitying is personal, but that’s a comment on what is, and was, a quite self pitying blog. It was self pitying because it was what I used for self pity. I can shrug that off. I can be scoffed at as a bad writer, and that’s also fair dos. Some people may think I’m a bad writer. (This one does have some weight- I have not pursued writing as viciously as I would like to due to fear of being told to go fuck off because I’m crap. And self pitying).

Online people can love you or hate you- there’s rarely an inbetween. Friendships wax and wane- not from love to hate (well, in some circumstances) but from, “You’re great”, to, “You’re being annoying”, to, “Oh, for god’s sake!”

When a friend has said those things to me- ouch. With online criticism, a hefty amount of it has missed the mark. But criticism from my friends, from my family, from the people I love- that is the most painful of all, because it has almost always been true. It has been said to my face. I have seen their expressions and they have seen the pain in mine. And some of those friends who have criticised me have become ex-friends, because their criticism was the end of the friendship. In some cases, it was because they did not like me, and the criticism was an attack. In others, it was because they were showing me the error of my ways, and I found it too painful to continue a friendship with them, as though I had been stripped and flayed. Now, older and wiser, I appreciate it and thank them. I always did but couldn’t express it, but it is too late for some things now.

Having cocooned myself off from people, I’m now back- soft, butterfly delicate- in the Real World where criticism is not just an occupational hazard but a certainty. I may be criticised by my co-workers. I may, in the future, be criticised by my patients, my tutors, my cohorts and any friends I try to make along the way. I will have to deal with it and learn from it, and I am getting better at that. I understand now- what I didn’t then- that it is not necessarily personal. And it is helpful.

I do have close relationships. My close relationships are exempt from everything I’m saying here. I’m boringly well adjusted in those, and extremely comfortable. In these relationships, I am my favourite self, the self I wish I had the courage to always be. I’m not awkward, bad at criticism, shy or etc with the people I’m very close to. I have Robert- my boyfriend, who I have an emanently sane, happy and healthy relationship with him (I met him on Teletext 11 years ago, so, er…) There’s my best friend, Stephen, who sadly lives in Belfast. And my family. I can take criticism from those people easily. But friends are laced with the anxiety of socialness. It has been hard for me in the past to reconcile those things with my already-nerves.

In work and in college, again, I will have no choice. Take it on the chin. And carry on. Difficult, though, isn’t it?

3: In Real Life, Not Everyone Is Mental or Interested In Mental Things

Phew, well. I have spent the past four years deeply involved in mental health activism and in being one of the most visible and well-known mental health bloggers. That, for those years, was almost my job.

But!

Did you know that although 1 in 4 people will experience mental health problems in their life, that 3 in 4 people are not mental and don’t give a toss about anything related to mental illness?

Mentalism was my topic du jour, 365 days a week. For four years. My own mental health- and others’- permeated every aspect of my existence. I want to state this now, bloggers: IT IS DEEPLY UNHEALTHY. Seriously, it’s not good.

I have surrounded myself with people who are mental and who like talking about it. In one way, this is great. There’s a lot of stigma surrounding mental illness, it’s good to talk. Talking openly about mental health led me to brilliant people and to empowering ways to spend my time in the years I had off the Real World being medicated and trying to recover.

But I got into the habit of talking about it so much that it has made me both deeply dull and even more sopilistic than when I was a teenager. Oh, I can do a rant alright. I do care about mental health a lot, hence my going into it as a profession (due to being a failed writer, natch). But that being all you rant about? To everyone?

It’s not good. And not everyone cares. There is shit you should keep to yo’self. And I’m not used to doing that, given that the company I have surrounded myself with freely admit and are not shocked by mental illness. Your work colleagues don’t care. They care about the things you do at work. And rightly so. The people in your college don’t care. They care about getting an education and lots of wonderful things in their lives. They may care about that stuff in private, but it’s private for a reason. These boundaries are new to me. I am learning a lot about boundaries.

I didn’t want to disclose in work, at all. You know how long I lasted? 2 weeks. So, it was a slip up in a discussion about celebrity mentals, but there you go. I am deeply pished off at myself for that. I don’t have to further some cause by being, “open”. Bollocks to that, I don’t want it to be known everywhere I go, by everyone I speak to. Because as much as it has also bought me into contact with amazing people, it has isolated and alienated me from others. Not because of OMG THE STIGMAS! but because I AM BORING going on about it. Because I talk about mental health a lot, I tend to end up talking about me a lot. ME. ME. MEEEEEEEEEEEEEEEEE!

Bollocks.

So I try not to- except here, of course. But I fail. I assume everyone cares about the plight of those with mental illness and otherwise in our country. They don’t! That’s why we have the policies in place that we do. I am so entrenched in the glittering company of those who do care that when I meet people who don’t, it’s shocking. “What, alcoholics deserve to die? Schizophrenics are all mass murderers? Why yes, thank you, I am enlightened! Of course I’ll get the filing done!”

In my university interview, someone there- FOR A DEGREE IN MENTAL HEALTH NURSING- said some of the most profoundly stupid shit I’ve ever heard about people with mental illness. Namely, that they were all child molesters. My Dr. Strangelove hand was twitching. But if that’s the future of nursing, what’s the general populace like?

I also tend to look for signs of unorthodoxy in other people. I am Winston Smith with Symes. It is partly trying to suss out kindred spirits. Anyone too normal I suspect of hiding something. I could pathologise the population. And that, dear friends, is an extremely dangerous thing to do.

And this is my private life too. And I deserve one at work and stuff, like everyone else. Mental health writing, activism, everything, will always be a big part of my life. But it can’t be all of it, all the time, like it was. It is too much.

4. What the hell DO YOU TALK ABOUT?

Then what do you talk about with People In the Real World? I mean, for the most part, they won’t share your interests or your ideals. But you still have to talk to them so what do you say?

I have now equipped myself with an arsenal of Things To Say In The Real World:

a) “So, what are you doing at the weekend?”

This one gives me a chance to practise, “Active Listening” and also to practise, “lying my arse off” as, due to aforementioned social-avoidance, I almost never have anything to do at the weekend but watching Come Dine With Me in my pants. Or if Robert’s off work, some shenanigans that can sound like criminal activity, so should probably steer clear.

Or I mess up these gimps' faces to amuse myself in Photoshop.

d) “So, where are you going to university?”

In my class at Birkbeck, although we have the Shared Interest Thing going on, I still don’t know anyone (but one person) well enough to ask them anything personal. This one usually sends them off on interesting things, except when they reply they have been rejected to all this year, and then ask me the same question, and I reveal I was bitching about choosing between two, but it’s okay, because mental health nursing is not an oversubscribed course like adult, child, midwifery, social care, occupational health or b other.

k) “Where do you live?”

…only to be asked of colleagues, not of Random People, as it looks stalky. This one is useful because it opens up onto…

i)…”Commuting in London PSHAW!”

…which is one of those communal bonding experiences. PSHAW!

With so much small talk at my disposal, I could be a hairdresser!

As silly as it may seem, these are things that are genuinely useful to me. I enjoy it. Because I’m a bit shy, I tend to get really overenthusiastic when people talk to me and crack my head open and thus flatten them against the wall with the force of six months’ worth of thoughts and observations about the world that I have not been able to share but wanted to. When they finish staring at me in silence, any number of the above generally diffuses the situation. I need to learn how to shut up and stop rambling. And these safe topics are good for that.

m) “Do I smell? I think I smell”. *SNIFFFFFFFFFFFFFFFFFF*

Not acceptable. Found that out today.

5) Normal People In the Real World Always Look Far More Polished Than You Ever Will

When I google, “Person at work”, I get this:

Look at those polished cunts cunts. How can they have such nice hair? (Albeit nice hair from the nineties). How can they look all professional, like they didn’t pick their shirt up from the floor after wiping their nose on it during the night? How can the sulky one in the background look so made up? HOW?

Here’s me, right, on my first day at work:

With my hair tied back, I mean BUSINESS.

Pained expression aside, that’s me looking professional. My hair. My hair does what the fuck it wants. And clothes. I can’t get, “professional” clothes. The clothing industry thinks someone of my height is nine years old and someone of my weight is six foot one. Cardigans, dresses and tights that rip at the crotch all the fecking time for me. I always look a bit greasy and ill-kempt. I cannot be the only one lumbering through the world feeling like their Adult card is going to be taken away at any time.

6) Once you realise that, it’s not so scary.

Another thing about being a bit of a shut-away is that you have this romantic notion of how uniquely fucked up you are. Okay, I don’t think I’m that fucked up. That was for my teens and early twenties. I don’t, for example, think I’m a, “damaged” or hard done by person. I don’t think I’m uniquely stupid or unlikeable. Okay, I am unlikeable sometimes and do unlikeable things, but nothing OHMYGODawful. Like I used to think.

But I do think I’m weird. I do think I have more quirks than the average. My brain doesn’t work quite like it should. I tend to lose and confuse people often. I do think I’m an incredibly acquired taste and wonder if I will ever meet all those whose taste is acquired to me.

And I am a bit weird. But so is everyone, in their own way.

Robert- who for some time was the clear winner of, “Most Socially Awkward Person In Our Flat Award”, once exclaimed to me, in the hushed, reverential tones of one who had just stumbled across irrefutable proof of god:

Everyone’s weird. Everyone’s insecure!”

and it’s true. While I’m worrying that I’m an eejit (in some situations, yes, I am), so is everyone else. While I’m wearing my stiff tights and careful make up waiting to be unmasked as a fraud, most people are doing the same thing. While I’m talking total bollocks in a nervous babble, well- okay, some people might want to throttle me. But some people might- like me- find a sort of relief, a kinship with the Nervous Ranters who dwell amongst us.

Not everyone has to like you. And you don’t have to like everyone.

ENOUGH IS ENOUGH!

I’m getting used to the Work World. I’m sort of trying to get used to the Study World (the last time I was in that one was my GCSEs). I’m going to try the Social World. I HAVE PLANS THIS WEEKEND. I am going to try- for once- to keep them.

Wish me luck!

Here is our sunflower. It needs a name please!

Panorama: Undercover Care-the abuse exposed on BBC

Edit via my friend Anna:

The Learning Disability Coalition are asking people to write to their MP asking for better social care for disabled people, following this prog. Link is here, it’s v easy peasy, write your name and click a button: http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=78&ea.campaign.id=10764

We were asked to watch this by our lecturer. I have spent the past hour bawling my eyes out and shaking with rage. Who needs torture porn like Saw when actual torture is being inflicted upon vulnerable people across the country? Where a patient with a learning disability and personality disorder who has been sexually abused is assaulted in her bed, then dragged from it. She tried to jump out of a window later that day- we don’t see that, we see her curled and desperate on the floor, howling. While the staff goad her, asking if she’s make a splat and open the window wider. Where a woman with a learning disability is showered fully clothed, then dragged into the outside in March with water jugs poured over her until she shakes. It will fucking haunt me watching her on her floor, now lost in distress and shaking with terror and confusion, as they cover her in more water and slap her in the face with gloves. And a friendly man with the mental age of four being slapped, punched and treated like circus entertainment by the mooing, gloating staff.

I have nothing reasonable to say about this right now, and part of me wishes that I had never seen this. Robert worked as a carer for years and was ostracised for reporting abuse. I found that hard to listen to. And this was watching and was horrific.   And feeling voyeuristic as the families cry while watching footage, while Simone shouts, “Mum!” as she’s being tortured. It is a Panorama documentary comprised of undercover footage at the Winterbourne hospital for vulnerable adults being abused-fucking disgustingly- by their unqualified, untrained, inhuman carers who I hope, as a result of this investigation, go to prison for assault, battery and attempted murder. How can another human being- one who is EMPLOYED to care- debase another so much? It is fucking revolting.  I cannot think about it for more than a minute because a life, boiling down to that, and being powerless, is too fucking much to bear.  I can understand why people turn away but it doesn’t make it right to do so.

It’s here:

http://www.bbc.co.uk/iplayer/episode/b011pwt6/Panorama_Undercover_Care_The_Abuse_Exposed/

This makes me fucking wonder why I want to go into a caring profession. In this documentary, the majority of the abuse is carried out by the support workers, but staff nurses colluded with them. How can I go into a profession in which these things are, “regrettable”? Where people have burned out and hardened or just fallen into it because that was expected of them, or because they wanted to avoid university fees? I know, from experience, how many wonderful nurses there are. And I know, from experience, how many power-tripping, couldn’t-give-a-fuck ones there are, and in the NHS, it’s almost impossible to be sacked. They just shuffle shit staff around.   If you are a shit nurse, or a shit support worker, you should be sacked like you would be for any other job.

As for carers, they should have more formal training and be paid a decent salary. Caring and nursing are two of the most privileged and powerful jobs there are- you are responsible for peoples’ wellbeing and dignity. There is no bigger responsibility than that. And yet, with shit pay for carers, they’re employed on the cheap and some people go into care jobs because they can’t get a job elsewhere. And some may be amazing at it, and just naturally caring people.  But it’s well known that care homes are hit and miss due to shit management and demotivated, uncaring staff.  That is not right.  And there is rabble about how degree educating nurses makes them less caring and more bureaucratic, but it remains to be seen.  It’s usually opined by reactionary twats who yearn for the days of Matron and Sir and Madam, and who blame the education system for lowering in standards of care, and not the understaffing of wards meaning its a challenge to properly care for patients.

This care home was a privately run one- to the tune of £3500 a week a patient.  Which could have been spent on employing some home support for the patient and their families.  There is little regulation for these types of homes. A nurse who worked there took his detailed concerns to the useless, useless, useless Care Quality Commission. He was ignored- no action was taken. Panorama confront the regional director of the CQC. He sits, toothless and beige and shows not one glint of remorse beyond arse-covering management speak. REGRETTABLE. You mite-hearted fucking scumbag.  He and everyone like him is as responsible for the abuse in care homes as the people who are stamping on the hands of their fellow human beings.

The documentary ends on the low and realistic note that if it’s happening there- which was inspected, three fucking times in 2 years and no-one did a thing- where else is it happening? These are people who could live at home or in a residential home if their families got any support, and they don’t, because the elderly and people with learning disabilities are on the bottom of priorities in social care, and social care is the bottom priority in healthcare. It should be a national outrage, and it isn’t.

At the very least, two of those in the documentary were moved (the other lady, the one with a personality disorder, I wonder what became of her, she was never mentioned again) and arrests have been made.  But it’s too little, too late. Fuck them.

On Motherhood and not being a mother

Ah, I have debated whether to publicly talk about any of this, but it’s been such a gigantic headfuck that writing about it all may actually help.

 

First off, I have been feeling constantly nauseous for about a fortnight. This, combined with the dizziness it has brought, has been added to my irritability (much calmed down, I’m back to taking a full dose, but it is zonking me very badly in the morning, and I am late for work and not sleeping enough still, and I largely think my, “Argh!”ness is down to a totally new routine rather than any mental things). It was so bad that I began to vomit on the bus on the way to work on Monday and had to go home. I had wondered, in a stroking chin fashion, is there another possible reason why I am snappy and nauseous?

Yes, apparently, according to 2 Sainsburys tests. From two different stores- digital, too.

And here, remembered and always, is the moment we can never return from. My running from the bathroom shouting his name so loudly he woke up, naked, wide eyed and shouting right back, “What is it? What is it? Is it the rat?” (A very large- but suspiciously healthy and brown-furred as to possibly be an adventuring pet- rat we saw scurrying outside and who we have been worried about burrowing its way into our bedroom). I threw open the door and was babbling, “Oh my god, oh my god!” I told him I was pregnant. He leapt out of bed, gasping in disbelief. He said, “This isn’t how I wanted to look at this moment”. And then, “You need to stop smoking”.

We went into the living room, me with my hands still a little bit damp from urine. We started talking about what was going to happen now. I can defer, that’d be okay. Both of us laughing and smiling, repeating, “We’ll manage!”

I’m on the contraceptive implant. I know that it was unlikely. I also know how rare false positives are. So I asked Robert to go out and buy more tests. I thrust my debit card into his hands. “Buy them all! Go! Go!” As the door closed behind him, I added, “And chocolate!”

He came back and three tests later, all negative. It was confusing. It was expected. What I didn’t expect was the way my stomach dropped into my shoes. Crumpling, shrivelling disappointment. I know now’s not a good time, I know. Robert’s job is insecure, I am a temp and a soon-student. But we have a spare bedroom…

We ate fish and chips and I smoked out the window- why not. He went to work and I couldn’t sleep, again.

I couldn’t concentrate in work. It wasn’t just the thought of a maybe-baby, but the still-sickness I couldn’t shake. At lunchtime I crept away and walked to Trafalgar Square and took another test in the toilets of Charing Cross station. Negative. That afternoon I had training for updating the intranet. I knew how to do it anyway (most CMS is very similar) so while the fluffy haired trainer trained, I was minimising and maximising windows of a pregnancy forum, wondering where I would fit in, and where I did.

At the bus stop on the way home I rang my surgery who offer “holistic medicine” but don’t offer pregnancy testing. On the way home, I bought another pregnancy test from Sainsburys. There can’t be two false positives from the same test, I reasoned. I tested again. It was positive, again. As a control, Robert took a test. He was without child. I had no idea what to think.

We'd be weird parents anyway.

My nerves were stretched to snapping point. When Robert went to work I sat in the living room and cried. Then remembered I could text the sexual health clinic near where I work for a slot the next day. So I did.

I kept a smiley face on all day and said I was leaving 10 minutes early for college (which I missed, again, and my tutor is losing patience with me) and then met Robert. I’d asked him earlier to come with me. “To a baby appointment? Of course!” he’d texted back. I wrote back to chastise him. And by this point, I had begun to suspect that I was not pregnant, I was just stupidly unlucky to get two false positives.

Which I was! Doctor’s test was negative, and so have the 5 I’ve done since from the cheap medical ones from eBay that arrived on Friday.

So that, that. We’ve been very quiet since Tuesday. While I was at the clinic I got my implant out- not only do I feel irrationally distrusting of it now, but I want more control over my own body. So I’m on the pill instead.

Is it strange I feel a sense of loss? Pregnancy and motherhood has always been a spiky topic for me. I’ve always wanted to be a mum. My sisters and I raised our little sibs due to my parents being- well, not good at being parents. I like to care for people (in part why I want to be a nurse) and I love children. I grew up in a close family. Our child-selves were lost when our dad died, and so was the family, in a way. Dysfunctional as it had been, it was ours. We love each other fiercely. I couldn’t imagine growing up an only child, and couldn’t imagine growing older without a family. I became more broody when my dad died, for obvious and natural reasons. At the dissolution of the family I had known, I wanted to create another one to love, too. I wonder if my recent broodiness has something to do with my dad’s anniversary (spent quietly, in silence, as though the silence on that day was more meaningful than all the other silences, when it isn’t. But I’m sentimental about anniversaries, as it’s the one day you are allowed to feel whatever you like about something you are informally banned from talking about on every other day of the year). With every year since his death, my past with him becomes more hazy, and that’s scary and sad. I think of all the things he won’t be there that. Despite his drinking I had never imagined, except in moments of anger at him, that he wouldn’t be there at my wedding. But he won’t be, and he won’t there for his grandchildren, who I wonder if he would bounce on his knee the way he did us.

More than anything, though, it’s a want of a family with Robert. We were estranged for so many years, and we both share the feeling that we belong together. Everything has come naturally to us (and in the initial stages of our meeting again, that naturalness was something I fought viciously against) and this has, too.

When I was first diagnosed with bipolar disorder I was warned very strongly against getting pregnant. And I understood that warning, even as a twenty year old, because I saw the lady in the hospital who thought her fetus was eating her feet, and I saw my mum descend into rats-in-our-bath madness when she had my brother. I grieved, a little then, but still took the, “Never take in pregnancy pills” and thought little of it until I did become pregnant three years later, and aborted it, partly due to that warning. A year later a psychiatrist told me I had been diagnosed with borderline personality disorder instead- and had been at the time of my abortion (worse, much worse still, was the thought that occurred to me afterwards, that the abortion would be considered an, “impulsive” act due to my “reckless” sex with the man I was in a four year relationship with. That was a thought I couldn’t deal with, as if it were a symptom of something I stopped having symptoms of when I was 22, and not something that broke our hearts). He also told me not to self diagnose bipolar disorder, despite my being treated for it, and despite those omnious warnings. When I burst into tears in the office he assumed it was because I had been so “invested” in bipolar disorder since I wrote a blog about it. It was nothing to do with that. It was because I felt as though I had gone through that under false pretences and spent the years beforehand fearing pregnancy and wondering if I would ever be a mother because of it all. I walked home in complete bits and confided in Robert, who came afterwards and had had to cope with the fall out of it all. At the beginning, talking about children at all was something we avoided.

I had asked- I had double checked- what my diagnosis and was always told the same thing. And it was after that I decided to wrench myself free from the power of labels (and from the power of medication, which did not work out so well) and never self-describe as, “bipolar” again (as for diagnosis, I have no idea where we are now- back to the start, I think, or both). And never describe a symptom to a doctor again, for fear of being told I self-diagnosed the illness I was medicated for and which made me put on 3 stone, lose lots of my hair, made me tired, ill and shaky. And that includes during pregnancy, which may or may not be dangerous.

Although that decision was the right one (and I am comfortable with admitting that now), I wish I hadn’t factored my health in. I wish I hadn’t let that shitty diagnosis the shitty scare tactics of doctors sway me in any way. It was true that then I could not have handled it. I feel like I could now. If I get pregnant again, my mental health diagnosis or lack thereof will not factor in. It will not have anything to do with any of my decisions unless I’m given reason why it should do. It wasn’t the first thing I thought about this time. I didn’t even think about the last time. It was a moment completely in itself- and now, the next time, I am going to have that moment in my head, and worry.

It’s hard to go back from this. From happy jumping around to planning and discussion. In a way, I was glad this decision was taken out of our hands. But it wasn’t! Bollocks. Now I have at least another 5 years if I’m being sensible about it. We look at parents with their prams and whelp. Both of our bodies seem to have kicked into, “BABY NOW” mode. Despite how much we like our lives as they are, it’s a hard feeling to fight. And we will be sensible. But I won’t lie and say it isn’t with a heavy heart.

Atheists: How Do You Feel About Dying?

So, there’s a question. Please retweet this entry, I’d very much like a lot of responses.

This is for the atheists, humanists and agnostics out there. How do you feel about your own death? Are you scared, and if so, how do you cope with the fear?

I am incredibly afraid of dying. I can go through periods of being able to cope with that fear, by accepting it and dismissing it. But there are other periods- like now- where the thought of dying sends me into a black panic. I don’t deliberately meditate upon the thought- it just catches me, briefly and brutally. The brevity of my own existence, and the incredible luck that has gifted me this existence at all, is something that can comfort me or crucify me. The vastness of space, the splendour of stars, the WHAT THE HELL!ness of life and earth and the glorious and uncontrolled, unknown universes are the same. Sometimes that makes me feel at peace, other times, knowing that is going to die, too, that everything does, everything, and even in seventy years I won’t be around to see what happens, makes me freak the fuck out.

It’s a dual rationale- to be aware that life matters because life is all we have, and to be equally aware that it is futile because when you die- and you will, oh hell, that is the worst and most screaming nerved shredding thought of all- everything you are, and did ceases to matter (and whomever it mattered to, they will die too). To be fascinated by the biological and physiology processes that bring death and to be crushed by the knowledge that these things apply to my own skin- my face, which stops being a face and ARGH.

The, “I’ll be dead so I won’t care” argument also freaks me out. Not feeling, not knowing, is horrible to think about.

Almost everything I have ever read regarding atheism, or from an atheistic slant, ends with, “NOW! NOW IS ALL WE HAVE! LIVE NOW! YOU LUCKY SOD, YOU’RE FRIGGING ALIVE!” It feels, in these shrinking scared moments, tokenistic. Like a lullaby to a crying child that soothes less and less as they grow older.

Religious people have their ways of coping as individual as anybody else does. But god and the afterlife is in general the giant security blanket for religious folk that non-religious types like myself do not have (nor want).

What about you?

Warning: May Contain Nuts wins Sony Award

Forgot to mention this!  Warning: May Contain Nuts, a fortnight of workshop, radio and live performances on the topic of mental illness, won a Sony Award, hooray!

I was involved as a performer and talking rubbish on Radio Berkshire (along with loads of other excellent people), and you can read my posts about it (and them!) here.

How My Dad Died: Repost from April, 2007

…and how things change.   This post clarifies the next one.  My dad died of alcoholic liver failure on May 17th, 2006, five years ago now.

April 2007, at the sage old age of 21, on the Secret Life.

I was asked in comments to write a story about my dad here.

I have very few specifically positive stories of my dad. Plenty of lovely memories, but they are fleeting, small events like him making us Toasted Toppers or his insistence that Graham Chapman deserved a better looking boyfriend than David Sherlock.

Wedding Day

I’d never been to a wedding as a Grown Up. Nor a reception or any suchlike thing. The first wedding I remember was that of my aunt and uncle, Anne and Brian. Anne is a blonde model who appeared in speeding adverts, I’ve seen her in a bridal gown only once before, and that was on an advert on Ulster Television- “40 miles an hour!” with blood rolling apologetically down her dress. She used to come back from filming in England (“You’ve been to England?” we’d gawk at her) with those fat red dummy rocks in clutches for us. My uncle Brian is a big nosed, fresh-faced lovable man who has raised his children to have quiet country burrs which is somewhat exotic to me when he brings them begrudgingly to their aunt’s house. Continue reading How My Dad Died: Repost from April, 2007

The Downsides of Dignity/Hardest Hit March

Do you know what the only good thing about being disabled is?

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Hooray! London is my not-an-Oyster!

That’s it.   But not quite.  There is one more thing.  It’s the association with, “dignity”.  

You can't tell by looking at me, so here I am, pictured earlier, carrying a sign to prove it.

(Yes, I am fatter than you think I am and I have worse hair!)

People with mental illnesses don’t get the admiring/pitying, “Ah, how dignified they are to carry such a burden!” looks in the street. We’re mental. We get the, “I know kung-fu!” looks. People in wheelchairs are usually the main recipients of these looks, as wheelchairs are the most visible sign of disability. This is not universal, but I’d wager that it’s a fairly common association. People with disabilities serve as a reminder to people without that they’re lucky to have what they have. And I don’t think they realise what they have, and I don’t think they realise what is being taken away from people with disabilities. Dignity is one thing. The association with dignity doesn’t always work in favour of the dignified.

I was a bit emotional at the march. I approached it nervously, holding onto Robert’s sign-less hand like a child. It was amazingly well attended- in fact, it was the biggest mass mobilization of disabled people in the United Kingdom ever, with roughly 3000 attending. Charities, to their credit, made their presence visible. Supported, as many are, by government grants does place a bit of a stranglehold on charities. Vocally disagreeing with government policy can mean cuts in their funding and then nobody benefits from their work. The RNIB were there, Mind were there and Rethink were there, rallying with chants of, “We need support! We need care! Don’t take away our welfare!” There were people in wheelchairs, on crutches, many guide dogs, signs in braille…AND HERE, AN INTERMISSION, TO SHOW YOU THIS BLOODY AMAZING SIGN:

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…and people like me, with non-visible disabilities. There were under-supported, undervalued, underpaid carers and allies. People came in coaches. Took their afternoons off work. Robert sacrificed his sleep before his nightshift to be alongside me. My friends Ed and Ewan attended, as did my friend Anna, whose mother is an activist and whose brothers have autism. I found it inspiring, looking into such a huge crowd and seeing so many faces, so many signs. The atmosphere was one of festival, with drums banging, horns honking and chants rising into the air. People were laughing and joking, carrying their babies in slings and rattling clappers.

But a glance back at Millbank and I felt the sensation of being on a precipice before falling. I stopped and looked for a moment. These thousands of people were representing themselves and those who couldn’t make it and who can’t speak up. And their lives- our lives- are being thrown into the pits.  This is not hyperbole.  People are going to die because of what the government is allowing to happen.  People are not going to pass the WCA, people are going to find it too stressful to even go to the assessment, people are going to fall into financial hardship, people are going to be stripped of their Disability Living Allowance and lose the privileges that comes with it (as it is a, “passport benefit”, and indeed, without it, I would not be on my part time course and I would not have had the privacy of a one bedroom flat to be ill in).  People are going to be left housebound and what dignity that have- that word again- is going to be taken away.  People are going to have to rely on their partners to support them when they can’t.  This is not hysterical.  This is real, and it is happening to people. Not just now. In the future, this is it.

I realise I drift in circles of political niches when I speak about welfare reform and cuts and people disagree with my viewpoint. To be, it is the sane- nay, humane- viewpoint to be disgusted and outraged at the way the sick, disabled, the poor (and the are often one and the same) and the services that assist them such as Legal Aid, are being targeted. But people often rebut that with, “We are all in this together, and of course welfare needs to be reformed”, without an idea of just how savage the reform is. Without understanding how a propaganda machine- from the BBC with, “Saints and Scroungers”, to the Sun’s dedicated section on, “benefit scroungers and cheats”- has been mobilised to dehumanise people who exist on benefits. That there are other cuts that could have been made, and fairer ways in which to impose the reforms. I am not against some reform, but the government needs to stop with, “benefits culture” and, “empowering the disabled”, because they aren’t. They are disenfranchising and isolating the disabled. The DWP can keep saying:

We are reforming welfare to make sure that the billions we spend on benefits goes to those who need it and that for the first time disabled people get proper help and support to live independent lives and work in the mainstream jobs that they want.

“Mainstream jobs” may be suited to many people with disabilities, but what they don’t realise is the barriers that face those with disabilities in the workplace. While I’m glad that pre-employment screening questionares are no longer legal (thus you do not have to declare a mental illness), employers still discriminate against people with mental health problems and, despite us being protected by the DDA, reasonable adjustments are often not met. Getting time off for appointments, hours to be worked within when one is less affected by medication (how I pine for you!). I personally am very afraid of people I work with finding out about my illness. I am afraid of how that is going to change how they treat me, because it invariably has in the past. And where are the jobs? If you had 2 people going for a job and one had a disability, in all honesty- who would you employ?

And the support is being withdrawn, not expanded.

So I don’t repeat myself, this is what I wrote on the Guardian’s live blog about NHS reform last week:

I spent four years as a patient of mental health services. I’ll spend
the next four years learning how to care for people with mental health
problems. Although I received good care, the trust I lived in became
increasingly fragmented. Fewer staff cared for more patients and
every fortnight a scheme for patients- such as stop smoking support,
disappeared from the wall. However, it enabled me to become well
enough to carry on with my life.

Those who are ill- with mental health problems or otherwise- need
support. That support is being withdrawn. Disability and sickness
benefits such as the Employment and Support Allowance are now harder
to claim. Legal aid may no longer be available to those on low incomes
who need help navigating both employment issues and the welfare
system. Across the country charities such as Mind, which prop up the
work that the NHS does, are seeing their budgets cuts, or- in the case
of Lincolnshire Mind- are closing altogether. Those of us studying
mental health nursing face uncertainty as around 6000 mental health
jobs are being axed. So there will be fewer nurses, therapists and
social workers to support those with mental health problems. There
will also be less financial support, with less legal support and with
less charitable support. With 42% of GPs admitting that they are
worried about commissioning services for mental health problems
because of their lack of knowledge about services for severe mental
illness, then it is difficult to feel confident about the future of
care for those with mental health problems in the UK.

The contributions based ESA is stopped after a year. Where is the support then? And to explain how subtly the goalposts have been shifted, here is an example from my own life. Last year, I was approved for- HOORAY!- a Personal Budget so that I could study part-time at Birkbeck. This was from the council and has pretty much changed my life. It’s why I’m going to university, and it’s why in 3 years I am going to be qualified to do more than write bollocks at you.

The funding took 6 months to come through. Halfway through my course, I was told that my funding had been withdrawn. Initially, disability living allowance was not counted as income. I was on income support, which is Not Much Money. DLA is non-taxable, and it’s generally not counted as income because it’s extra money to meet the extra costs that disability bring. The goalposts had shifted. DLA is now counted as income. I had to pay my course fees- more than a £1000- out of my DLA if I wanted to continue. I couldn’t afford that at all, and the only reason I’m still in my course is because my social worker went absolutely batshit at them. It is little things like that, making it harder, not easier, to live a, “normal” life off benefits.

A part of didn’t feel that I belonged there.  I’m not on benefits anymore.  I do agree in one way that benefits can keep a person in stasis.  While I was on them, I couldn’t live with my boyfriend, couldn’t have those talks about marriage and kids.  I decided that I also couldn’t face being hauled in front of the DWP.  I jumped before I was pushed and I am extremely aware that if I do become ill there is nothing that I can do, no support I can ask for.  It’s up to Robert to support me financially.  But I am kidding myself in believing I have somehow, overnight, become an unaffected, an ally. I am, in truth, still someone with mental health problems.

As the march moved, we became aware of the police presence.  They seemed entirely unfazed by us.  That needled me.   On one hand, it’s good that they were so respectful and kept their distance.  On the other, I wanted them to be carrying batons.  To be afraid of us like they are of UKUncut, like they are of the students.  Those are the protests that get all the publicity.  The coverage of the protest was paltry. Even Twitter was fairly quiet.  At one point, early in the protest after the speeches at Embankment, a tourist bus cheered as it passed.  They probably didn’t know what we were doing.  But it was still appreciated.

And there’s the rub. There is dignity.  A peaceful, beautiful protest and I am proud of that.  I am glad that the protest didn’t descend into violence.  The most aggressive it got was chanting of, “You say cut back, we say fight back!” which was brilliant.  And delivered with the aggression it deserved.

But I do wish that they had been afraid of us.  That someone was.  That someone in parliament had pause for thought- not just because of the human cost of what they are doing, but because of the backlash.  They didn’t sell off forests but they’re alright with branding sick and disabled people scroungers.  Nobody is, and that’s why the government get away with what they do.  People expect students to be rowdy because they’re young. So they turn up with the cameras. People expect disabled and sick people to be meek and dignified. So the cameras don’t come.

Hardest Hit did a very good job of mobilising a diverse group of society.   It isn’t because we’re apathetic.  It’s because students are people in higher education and  sickness and disability are general terms.  Everyone lives with it differently and will be affected differently by the cuts.  There are people who can speak out and people who need to rely on others to do it for them.  Take autism, for example.  The prevailing perception of autism is largely founded upon high-functioning autism.  People forget that there are people with autism who will spend their lives in residential care and who cannot communicate, and those people are affected, too.  We, today, were visible.  But it’s 3000, 5000.  There are millions.

A little evil part of me wanted something to kick off, despite the fact that, personally, I would have panicked.  But a very large part of me knew that if that had happened, the consequences would be dire.  Sick and disabled people don’t need any more bad press, and the actions of a few who did kick off would brand everybody else.  There was wry joking in the crowds about the possibility of the Daily Express running a story along the lines of, “CAN’T WALK, CAN’T WORK- BUT CAN MARCH?” I wouldn’t be in the least surprised.  But even worse is if nothing came of this but a patronising pat on the back.

It passed off into the warm, gentle afternoon, around the most beautiful and most moneyed parts of London.  We went to the lobby, then, realising I was too idiotic to not actually register with my MP, clambered onto the tube.  A few people asked us what our signs meant. I hope that this is the start of something.  Please begin listening to us because we are nothing short of pleading.  That is the last stop of dignity.

For photophiles, here are some pictures.  I forgot my camera and used Hipstamatic, which unfortunately adds a filter of sentimentality to everything. They are huge, so click to embiggen.
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