The Hidden Village of Aspergers

January 20, 2015

Falling In Love Again

 It’s neither blunt nor bland
It’s Edward Scissorhands
It’s naughty and sublime
Like the Bride of Frankenstein

Anyone who expects all blended families to be like the Brady Bunch is in for a world of disappointment. Sometimes they’re more like the warring clans of the Naruto universe, or characters from Shameless. I’ve been in two. The first time around, I was miserable and felt like I didn’t belong among the horde of new relatives. The second time around, it worked. Both families clicked.

I won’t go into details about my stepbrother and stepsister, in order to protect their privacy, except to say that both are in their teens. He’s a breakdancer and choreographer in the making, she’s into acting and singing. They are two wonderful kids. They’ve been very kind and supportive towards my mum and her alcoholism, and neither of them were freaked out when I had a meltdown in Germany in 2012. I feel more comfortable around then than I do around my last set of stepsiblings, who I didn’t get and who never got me.

When my mum announced in 1995 that she and her then boyfriend were going to get married, I cried. I was angry with her and accused her of replacing Dad. It was only two years after he’d died and I didn’t feel ready at all for a new father figure in my life. I’ve never coped well with change, and having to take on a new family, three new stepsiblings and various extended family, was a lot to deal with. But I learned to like her boyfriend, and to swallow my sadness and try and look on the positive side of things – at least Mum was happy. None of us knew at the time how things were going to turn out. I read Anne Fine’s Goggle-Eyes a lot around that time, as I identified with Kitty, the heroine. She too was the daughter of a right-on feminist mother with a background in CND, and she too was having to get used to a new man in her mother’s life, who was older and more conservative. (The only difference was that Kitty’s parents were divorced, while my mum was a widow.) She learned to get on with him eventually, and I hoped it would be the same for me, and it was, at first. With my brother, it was a different story. He and my ex-stepdad hated each other, and I am not using that word lightly.

To cut a long story short, my mum and my ex-stepdad split up in 2008. It had been coming for a while. My brother wasn’t bothered, but I was, because it was another big change, and because I was more ambivalent about my ex-stepfather; after all, he’d taken me to a Sheffield Wednesday match (I’d wanted to go to one for ages), he’d been kind to me at my maternal gran’s funeral and when he found out I was cutting myself, and when I came out as bisexual, he was totally fine with it. But little things started to dawn on me; he’d never come to visit me while I was at university, for instance, and he’d seemed fairly unconcerned about me when Mum had told him I’d be upset about the divorce. He cast me and my brother off like so much trash, and that hurt. I eventually cut all ties with him in 2009, and haven’t looked back.

Mum started dating again after they split up, mainly guys off the internet, though nothing came of it. Then I found out she’d been in touch with Richard, an old boyfriend of hers from university who she stayed friends with after the split. We’d visited him a few times when my brother and I were kids, and I always remembered him as the Tintin Man because of all the Tintin stuff he had – books, figures, and so on. He’d split up with his wife and he and Mum had been phoning and emailing each other. Eventually, one thing led to another and they got back together. I wasn’t upset this time, just relieved that Mum was happy and that it was someone we knew this time.

Richard became more a part of my life as the years went by, and now it’s 2015 and he and Mum are living together (have been since 2013), and my stepbrother’s at Bournemouth and my stepsister’s in Sixth Form, and they’re talking about getting married, and we had our third Christmas together last month (although the stepsiblings were at their mum’s, so I missed them this time). This time round, I’m prepared. For a start, I’m older and I already know what it’s like to be in a blended family, but also, I’ve had years to get to know my new stepfamily, and this change isn’t scaring me. Plus, we’re not living together, so we’re not in each other’s faces. OK, I did have a bit of a wibble when Mum moved down south, mainly because I would miss her old house and because I couldn’t just hop on a train whenever I was in a crisis (Manchester to Cambridge is three and a half hours’ journey, at least). Unlike my previous stepfamily, I feel like I belong. I don’t feel I have to pretend to be something I’m not. They knew what they were taking on, and Christmas isn’t the awkwardly formal and overcrowded occasion it was with my last stepfamily.

I’m not angry with Mum for marrying my ex-stepdad. She was getting over my dad’s death and she was lonely and unhappy and none of us knew what an utter douchebag he was going to turn out to be. What’s past is past. For all those other people with Aspergers in blended families, though, I hope you get stepfamilies who love and understand you and don’t treat you like some kind of embarrassment. Change is hard, new people coming into your life and staying there is hard, but it’s a bonus if they’re new people you can get along with.

September 6, 2014

Armageddon

UV rays, Factor 40
This game of Twister’s got a little bit naughty

Here’s something about me which may sound surprising: I like parties.

More specifically, I like parties where I can catch up with friends, people get a bit pissed but not to the point where there’s vomiting (of which I have seen and done my fair share) or fights, the music’s good, there’s noms and drink on tap, you don’t have to worry about the police closing you down or gatecrashers, and everyone’s generally chilled and happy. Most importantly, I like parties where I know people. I always found Jewish Society parties difficult because I could count the number of people I knew on one hand, and I coped by getting drunk. This is not something I would advise. A couple of bevvies are OK, but when you’re on meds and you have a tendency towards getting depressed, you have to watch yourself. I’m not worried about turning into my mum, it’s more that when I drink when I’m unhappy, I end up turning into a maudlin drunk and/or saying and doing things I regret, such as one time in Germany where I stole a pretty little glass from a pub, only to smash it in a jealous rage after seeing a guy I fancied getting off with another girl. I cringe when I think about it. Kids and animals could have hurt themselves on that glass.

I like parties that are not being thrown by me. I am, frankly, shit at entertaining at home. My parents gave a fair few dinner parties and my brother always had a gang of friends over for his birthday (and had a clandestine party while my mum and ex-stepdad were away one weekend, though fortunately he and his mates did not trash the house and cleaned up before the parents came back, and they were none the wiser). I can only remember having one birthday party, when I was in infant school, and I hated it. I found the whole experience really stressful. Ever since, whenever I’ve wanted to do stuff with friends for my birthday, I’ve gone out to a restaurant or pub or club. I’m less self-conscious when I don’t have to do the cooking or fuss over guests and make sure they’re entertained. Parties are not fun when the host is neurotic. I’ve yet to host a Passover seder for the same reason; I can lead prayers and the Hallel, which I know fairly well from having to sing them at synagogue, but the thought of cooking for a group of people and having to cater for different dietary requirements and abide by the kitniyot rule (which I don’t keep, but some of my friends do) brings me out in hives.

One good friend of mine, E, who I have talked about before, always threw the best parties. I have so many happy memories of those parties, mainly involving people doing stupid things while drunk, such as burning a Michael Jackson doll in effigy, climbing on the roof and balcony, and playing games of Binhead where the loser had to do a dare (mine was ‘rant into a sink’; apparently the only words anyone could understand were the swear words, of which there were many). Sadly, I missed the one where several men got naked. At one of those parties, my ex-boyfriend and I got together. I also went to a few in Sixth Form, mainly at my friend Clare’s house in Vicar’s Cross. I was with like-minded people, there was always good music playing in the background – Hole, Radiohead, System Of A Down and so on – and I was starting to come out of my shell. Then there were all the society parties at university. The Rock Soc ones were fun (save for the first year end-of-term party, which culminated in me vomiting into my sink and passing out on my bed); the J-Soc ones were tolerable if I knew enough people. Purim parties and Booze for Jews were the best; at least at Purim parties, everyone looks and acts like a tit because it’s customary to dress up and drink until you ‘can’t tell the difference between Mordechai and Haman’ (cue booing). (I was annoyed that my ‘avenging angel’ outfit didn’t get in the Jewish Telegraph.)

Of course, there were also terrible parties, like the rave I went to at Ed Whalley’s farm (he was a Chester politician with a reputation for being a bit eccentric) where most of the kids there were people who’d bullied me, or a party at the Scout Hut where I had one alcopop too many and got a ton of flak for it at school when it got out that I’d been drunk; the party at my ex-boyfriend’s house where one woman had an epileptic fit, I had a major depressive episode, and a guy was kicked out for breaking my ex’s guitar; or the Year 11 leavers’ party where I was so ill my mum had to pick me up, I told my ex-stepdad to fuck off, and spent the next day with an enormous hangover. It was a learning experience and a wake-up call. Rarely did I get so paralytic again. I hated the feeling of being out of control, and only really did it because I thought that was what you were supposed to do.

One reason I went to society parties at university was to push myself out of my comfort zone, to meet new people and socialise. It was hard, and there were a good few false starts and nerves, but it did help me become more confident, although I still have to make sure I’m in the right mood for fear of being a massive downer. I am not a massive party animal; I am a homebody at heart and always have been, and these days, due to being ill, I don’t go out much. But I don’t want to become a recluse either. Not everyone with Asperger’s enjoys parties, and that’s fine. They’re not for everyone and a room crowded with people and noise can be hell on earth for people on the autistic spectrum. But for me, the odd one is fine. In a way, it’s a form of self-care; I need to remember how to talk to people and interact with them. It’s something I worry I’ll forget.

April 2, 2014

The English Language Let Me Down

All my words done failed me
Every line derails me
This is the day that the English language let me down

Words. Language. Etymology, definitions, wordplay, translation, stories and poems, word puzzles, word games. English, French, German, Spanish, Hebrew. Language is both my friend and my enemy. In I Am Unlike A Lifeform You’ve Ever Met, I talked about books and the imagination. This post covers speech and language.

Somewhere, there is a tape of me reading The Very Hungry Caterpillar, aged about two. My first word was ‘duck’. I’m not sure when I learned to talk, though I wasn’t a late developer or non-verbal. I do remember, however, that I spoke in a monotone, and that efforts were made to correct this and have me intone words like ‘normal’ people. Mum also told me my speaking voice was too high-pitched and that I should try and make it a bit deeper, and that I was too loud. “Turn the volume down,” was a comment often directed at me. Years later, in synagogue, the rabbi took me aside and asked me not to sing so loudly at Friday night services as I was drowning other people out. This upset me a lot; I was just enjoying the service and had no idea that what I was doing was wrong, and as it was not an Orthodox synagogue, the principle of kol isha did not apply. Was it because of my Aspergers? How the fuck should I know? Maybe it was. I have no idea how I sound to other people. When I hear my own voice played back to me, it sounds horrible, like a cross between Morrissey and Henry’s Cat. I hate my singing voice as well, possibly because Jack always used to tell me to shut up whenever I sang along to music in my bedroom. I have a bit of a complex about it. How it could turn any nice Jewish boy on, I do not know.

Anyway. Tangents aside, I apparently went to see a speech therapist at some point when I was younger. In terms of writing, I was doing OK – I got team points for stories and essays I’d written at school (I even wrote the script for our class’s production of the story of Pandora’s box), I was in the top group for spelling, and when we had to write sentences using words on coloured cards. It was also at primary school that I discovered an aptitude for languages. OK, I’m not a polyglot and I’m not fluent in any language besides English, though I can speak German pretty well, but I got interested in languages after going to French Club in Year 3, having French lessons off a friend of Mum’s in Year 5, and doing French lessons in Year 6. Even when I was little, the way people said things in other languages fascinated me. When we went on holiday to the Algarve, I pored over the Portuguese phrase book we had. I was fascinated by an old English/French picture dictionary and the conjugations of irregular verbs. How could ‘avoir’ become ‘aurons’ and ‘aurez’, and what the hell was the deal with ‘être’? When Dad went on a work trip to Germany, he brought back comics in German. I didn’t have a bloody clue what any of the words meant, though they did come in handy when I started doing German in Year 9. I found the German language even cooler than French, with its complicated word order and Modalverben and ever-changing masculine definite article. I also liked the way it sounded, and was made up when a friend gave me a Rammstein tape. (Till Lindemann’s voice helped. That guy could sing the contents of the Dusseldorf phonebook and make it sound sexy.)

When I got into Sixth Form, I decided I wanted to read languages at university, since languages were my thing; I was doing A-Level French, German and English Language (and my transcripts of Space interviews came in handy when we were studying accent and dialect!) I wanted to read Chinese or Spanish alongside German. Cambridge turned me down, and I got offers from Durham and Leeds, but went with Manchester, which didn’t do Chinese at the time but did offer Spanish. I took night classes in my gap year to give me a bit of a grounding in Spanish. I find it harder than German, I have to admit. Maybe it’s because German is closer to English. When we were studying the evolution of the English language, I noticed a lot of similarities between Old English and German. The fact it was phonetic, for instance.

On the subject of accents, Rudy Simone writes in Aspergirls that she has a tendency to pick up accents; she recalls being mistaken for an immigrant after speaking in a ‘Hispanic’ accent that she’d picked up from a colleague. The same thing happens to me. The one time I did consciously put on an accent was in high school, because I was being bullied for talking ‘posh’, but after moving to Manchester, something bizarre happened where I was out with mates and I started talking in a sort of weird half-Manc half-Yorkshire accent. Everyone thought I was putting it on, but it was real. I’ve toned it down a bit, but it changes depending on who I’m with and where I am. Expose me to Everton matches or members of Space, and my accent gets a Scouse tinge. In London, it goes a bit cockney. I’m not putting it on to make fun of people; it just happens. It’s a kind of osmosis. G-d help me if this ever happens in Scotland. Perhaps it’s some kind of instinct to imitate sounds, like a baby learning to talk.

As I’ve said before, I find writing easier than talking. Writing helps me organise my thoughts better, and I can rewrite what I’ve written, whereas when I say things, that’s it, the cat is out of the bag. Sometimes I can’t find the right words to express myself when I speak, or I say stupid or horrible things without thinking. At least, sitting at a keyboard, I have a bit more control over what comes out.

March 27, 2014

Juno 54

Filed under: music — kankurette @ 10:53 pm
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“I think G-d puts you on this earth to do certain things. I think He put me on this earth to (be a musician). I hope so anyway, because it’s the only thing I can do.” – Franny Griffiths

When asked if I’d rather go blind or deaf, I don’t know what to choose. Can I take a third option and lose my voice? If I went blind, I’d have to give up reading. If I went deaf, I’d have to give up music. There are ways around this – talking books and feeling vibrations – but it wouldn’t be the same.

You might guess, from reading this blog, that I might just be quite a big fan of Space. Last week, they toured with Republica to promote their new album, Attack Of The Mutant 50ft Kebab. I spent a good part of last week following the tour and went to see them in London, Liverpool and Manchester. At Manchester and London, I hung out with them after the gigs, and it gave me the determination to conquer the nasty little voice in my head telling me they didn’t really like me. Over the years, they have kept me sane. This is not an exaggeration.

They aren’t the only band I like; I’ve been into the Pogues since I was a toddler (no exaggeration – my parents used to play them all the time, and I got a bit of a surprise when I found out the Old Main Drag, one song I loved as a kid was about rent boys), and I’ve taken Mum to see them a couple of times as a birthday present. They and Abba and the Beatles were the soundtrack to my childhood; Space, Hole, Catatonia and the Manics got me through high school (and so did the music magazines I consumed); RATM and the Deftones took me into Sixth Form; System Of A Down through my gap year; Tori Amos and Regina Spektor and many, many more at university. Music is everpresent in my life. It is my comfort, my escape, just like books. To drown out phone conversations and students and babies on the bus, I plug myself into my iPod and I’m away with the fairies. I’d rather have one noise in my ear than several at once.

This might sound a bit weird, coming from someone who hates crowds and goes into sensory overload, but I love going to gigs. The noise doesn’t bother me, although I could never have withstood My Bloody Valentine’s feedback fest; the only drawback is the crowds, and being pushed out of the way due to being short. OK, so I’ve had the odd bad experience – nearly getting asphyxiated at Rammstein, bad period pains at Garbage – but the good outweighs the bad. I’ve seen Moby, Muse, the Zutons, the Manics, Radiohead, We Are Scientists, Le Tigre, Sleater-Kinney, the Sugababes, Soulfly, Tori Amos, Fear Factory, Cerys Matthews, Machine Head, Marilyn Manson, Queens Of The Stone Age, the list goes on. I went to the Leeds Festival in 2002; the Reading Festival every year from 2003 to 2008, Glastonbury in 2004, 2005 and 2007; Download in 2006; Latitude in 2010; Primavera Sound last year. I’m seeing Super Fast Girlie Show next month, and Nine Inch Nails and Janelle Monae in May. I don’t go to as many gigs as I would like, mainly due to being ill and losing enthusiasm for things generally (I stopped reading Q Magazine a couple of years ago as it was too expensive and I felt out of touch), but I don’t want to give it up either. Some people find the idea that you might watch the same band more than once weird – my friend Sarah, who goes to a lot of gigs, gets this all the time – but every gig is a different experience.

Both my parents were into music; my dad was a self-taught guitarist and wrote music reviews for the student paper at Stirling, while my mum sang in various choirs. I grew up listening to mixtapes in the car and learning to play the piano. I also learned the cornet for a bit, but was shit at it, though I did buy a trumpet a few years ago (and I need to practice more). I played the flute in high school, mainly because I didn’t want to learn a brass instrument (in retrospect, I wish I hadn’t), the drums, and taught myself to play the guitar. At university, I was in a band called Midland Railway for a bit, and I played open mic nights, sometimes with my then boyfriend. Most of the people I’ve been out with are big music fans; my ex-girlfriend made me a mix CD for my birthday. They’ve not all liked the same bands as me, but some overlap does help, admittedly. Having bands in common gives one something to talk about.

Music might not seem an obvious avenue for someone with Aspergers, according to the stereotype, but there are musicians out there who are on the spectrum. Ladyhawke, Gary Numan, Craig from the Vines, Abs from 5ive, possibly Thom Yorke. So much for people with Aspergers not being creative or imaginative. Hell, I write the odd song myself, I wrote songs as a coping mechanism while at uni, though I haven’t written any for ages and some of my old lyrics make me cringe. Cerys Matthews, Franny Griffiths and Tommy Scott, James Dean Bradfield and Sean Moore, Regina Spektor, Tori Amos, Kirsty MacColl – I’d draw inspiration from all of them. I find my stuff quite hard to categorise. Wailing and piano-bashing, I guess.

I find some types of music, such as the weird noise stuff my brother listens to and happy hardcore, impossible to listen to, although strangely, I don’t mind death metal. My iPod has everything from Willie Nelson, the Bonzo Dog Doo Dah Band and Glenn Miller to Cypress Hill, the Spice Girls and Naruto theme tunes. I’m happy to give any genre a go. I never really got into boy bands, although I did have a soft spot for East 17 and PJ & Duncan, and went through a Boyzone phase during my first two years of high school. That was one area where pressure didn’t get me too much. In the Times article I quoted recently, there was a teenager, Nina, who hated Rihanna and other popular music, preferring the likes of Nirvana. Her family noted that she didn’t care what was cool. Reading about her, I thought, “Good for you, Nina. Like those bands because they make you happy, not because you feel you have to.” Peer pressure got me in other ways. My music taste was one niche I determinedly carved out for myself.

March 13, 2014

Fran in Japan

“Always be a first-rate version of yourself, instead of a second-rate version of somebody else.” – Judy Garland

My family was full of female role models for me, growing up. I had my mother, my aunties and my grandmothers. They are and were all people I look up to, though I felt for a long time that I wasn’t the daughter my mother wanted; that I wasn’t feminine enough, not interested enough in clothes or make-up or stereotypical ‘girl’ things, not sociable or outgoing. She used to compare me to Flora Miller, one of the other girls in my class, and ask me why I couldn’t be like her, to the point where I wanted to ask her if she could adopt Flora and get rid of me, since she liked her so much. I even wondered if she actually loved me. Of course, I know now she does. I blogged about my maternal gran, Margaret Elma Carder, a while ago; the more I found out about her after her death, the more I admired her, and the same is true in Mum’s case. I had no idea that she helped organise a conference for women in industry, or that she was Head Girl, or that she never got to do the full uni course as planned because my grandad was ill and she had to take care of him. I’d known for years that she was anorexic as a teenager, suffering a relapse years later, and that she had two brothers – Robin and Andy – both of whom died. Robin died when he was a baby (he had a hole in his heart), and Andy died when I was very little; I think it was pneumonia complications. Other stuff has come out which I will not repeat here, because I respect Mum’s privacy, but I will say that she is one of the strongest people I know. She says having a daughter with Aspergers has been a learning experience for her, and I feel that at last I’ve managed to make her proud of me. I don’t feel like so much of a failure anymore.

I also found people to look up to outside the family, people whose behaviour I wanted to emulate – and not all of them were female. R, my best friend in high school, was one of these people. Even before things got a bit more personal, I loved how outgoing and friendly he was, how he could talk to anyone – something I could never do. He was so refreshingly normal, compared to me. Without him, high school would have been even more of a hell than it actually was. There was also P, who I saw as a kind of academic rival, and who I became quite friendly with in sixth form, but sadly, he was the second man I got obsessed with. He wasn’t the most serious case, though. That one came later.

When I got to uni, there were people I met there who actually got me and liked me. One woman who really helped me at uni was someone who I’ll call E. I’d seen her around the languages buildings and she seemed nice, but I didn’t really get to know her until a year later when she and her boyfriend – who is now her husband – got talking to me outside Owens Park. She started inviting me to parties, for coffee etc., and I got to know her and her circle of friends. She is a couple of years older than me. Half of the people I know on Facebook, I’ve met through her, and if I meet someone in a goth club in Manchester or Leeds, there’s a good chance they’ll know her. She’s that kind of person. Like R, she can befriend and talk to anyone. I did have a tendency to put her on a pedestal, though I realise now she gets down and anxious too – she’s just better at hiding it than I am. She helped me a lot when I was going through a hard time in second year, and I was able to return the favour a little when her dad died a few years ago. She was also one of the people who made me decide to convert Reform rather than Orthodox, and one time, she drove out to see me and take me back to her flat when I was having a panic attack at Grand Central. She’s in London now, and I miss her loads. I admit I relied on her far too much when it came to a social life.

On a less personal level, there was Cerys Matthews – more on her later – and the boys from Space, in particular Tommy Scott and Franny Griffiths. I’m never entirely sure what it was about Franny that made him stand out to me; maybe it was the fact that it was his tracks I loved, or the fact that I played piano and keyboards myself, and listening to Space made me want to write songs like Tommy, and make the weird noises Franny made. I fell in love with ‘Fran In Japan’, the instrumental track on Tin Planet, especially after watching Franny playing it on Tin Planet Live video, and played it in GCSE Music for my performance exam and got an A. When I finally got to meet Franny and Tommy in 2002, I was amazed at how nice they were. I’ve met them several times since then. I’m not saying this to namedrop, but because they say you should never meet your heroes, and I’m glad that old saying was proved wrong for once. I have no idea what Franny thinks of me (apart from ‘ her team are shite’), but he’s never been rude or arsey towards me, and neither has Tommy. Hell, the guy let me sing ‘The Ballad of Tom Jones’ with him, and gave me a hug and took me backstage when I had a screaming meltdown at a gig, after a bouncer was yelling at us to get out while I was trying to talk to Franny. At London, Franny said he was impressed how I came to out-of-town gigs on my own. I think one reason why I admire Franny and Tommy so much is because they both came from nothing, played in bands and worked for years to get to where they were, and in Franny’s case, he went off to live and work in Spain, something I couldn’t ever do. Space also made me realise it was OK to be a misfit, that you don’t have to be like everyone else. Like me, they didn’t fit in. The music press in general hated them and wrote them off as wacky, the record company tried to make them change and they refused to compromise, and I have a lot of respect for them for making the sort of music they wanted and sticking to their guns.

As a conclusion: I know some aspies look down on neurotypical people, but I don’t. While some of them frustrate me, I need them in order to show me how to behave. Not how to confirm, but how to get ahead in society. The majority of people I admire, people who I wanted to be like, are neurotypical – and they’re neurotypicals who were able to accept me.

March 6, 2014

Dark Clouds

I think we need a holiday, a week or two in Mexico
The two of us, leave the fools at home
Away from all the heartache and the troubles that we’ve suffered
In the last two weeks, though it felt like years

It’s stupid o’clock in the morning. I’m watching Blur, in a concrete park full of hipsters. Jack and his mates are somewhere ahead in the crowd. Blur are playing ‘This Is A Low’, and behind me, the waves are crashing. The last festival I was at was Latitude, in 2010, where I camped with my mum, stepdad and one of my teenage cousins. Now it’s 2013, and I’ve seen Jack screaming like a teenage Justin Bieber fangirl at the Wu-Tang Clan, and wandered Parc Guell under a burning hot sun, looking down over the city. I travel around on the Metro and surprisingly, it takes very little time to get to grips with the Metro system, compared to its convoluted Berlin equivalent. I’m living on cheese sandwiches, knockoff cornflakes, pizza and festival food, reading Tori Amos’ Piece By Piece, talking to a Floridian woman and her gay best friend outside the hostel, sitting on the beach being mithered every minute by dodgy men selling mojitos and towels. It’s not my first holiday without my family – that would be the German Soc trip to Cologne in 2005, not to mention that I’d previously been to France on a school trip, Germany on a terrible work experience week and Poland and the Czech Republic on a choir tour. But it’s the first time I’ve been abroad, deciding for myself where to go and what to do, arranging my own cash conversion, booking my own flights and accommodation (which reminds me, I need to get this year’s accommodation for Primavera sorted…) There is no rain and no mud and no annoying teenagers slamming into me and no burning tents. Reading, this is not.

I should probably do a music festival guide for people on the spectrum, as festivals are a daunting experience. I had more panic attacks than I care to think about during the time I stewarded for Oxfam. I did have fun at Glastonbury and Reading, but there were times when I just wanted to go home, and let’s not even get into the last night of Leeds 2002. I would have to be on the campsite where the helicopters and burning toilets were. I think I got about half an hour’s sleep that night.

I sometimes fear that I depend too much on my family, and as I said the last time I wrote about it, going to Primavera Sound 2013 was a challenge; I wanted to prove to myself that I could manage in a foreign country, albeit one where I spoke the language to an extent. Unlike the other students in my flat in first year and the majority of the Jewish Society at Manchester University, I did not teach English to little kids in Israel or go hiking around Thailand or Africa or India. All the times I had been abroad were organised for me. Then, of course, there is the nightmare that is the fucking airport. The very thought of what happened at Schonefeld in 2012 brings me out in hives. Luckily, that stage of the Barcelona trip went fine – the worst bit was having to get rid of my shampoo. Barcelona itself is a beautiful city. Loads of my friends have been there; two of my favourite musicians, Cerys Matthews and Franny Griffiths of Space, both lived there (and Space shot the video for ‘Diary Of A Wimp’ on Las Ramblas). My mum took my maternal gran there for her eightieth birthday; I’ve promised to do the same for Mum if either of us live that long.

As an aside, one of the highlights of going to Barcelona was seeing Jack outside of a family context. A couple of months earlier, we’d met up before a Space gig in London as Jonny Abrams, a guy who I knew through Space fandom and who also turned out to be on Jack’s course, was also going and I had promised Jack that, were Space to play in London, I would come down and see him. Consider that when Jack and I were at Leeds in 2002, we avoided each other and the few times I did bump into him, I either blanked him or gave him the finger. Eleven years on, here I am sitting outside a pub with him and his mates while they eat some rather dodgy-looking tapas. Later we meet up and watch bands together and Jack tells his mates about Dad and one of them manages to sneak in some gin. Had someone told the teenage versions of us that we would have been hanging out at a festival in a decade or so, we would have both thought, “Hahaha, as if.” We are both older and, although this is debatable, wiser and not living together anymore. As much as I love Mum and Jack, I think the fact I no longer live with them is one of the reasons why my relationships with both of them are so much better these days.

Anyway, I don’t wish to go over old ground, except to say that I am going to Primavera again this year. Jack, sadly, is not as he is skint, so being abroad without anyone I know at all being there is the next step. Queens Of The Stone Age, Nine Inch Nails, the Pixies and Arcade Fire are all playing. I hope my body can take it.

February 23, 2014

An announcement

If you’ve been following this blog, you might have noticed that I am a big fan of the Liverpool indie/rock / uncategorisable band Space. I’ve written about hanging out backstage with them at a gig in Manchester in March last year, how frontman Tommy Scott looked after me when I had a serious panic attack at another gig in Birmingham, and how they got me through high school. As it happens, they’re releasing their fifth album, Attack Of The Mutant 50ft Kebab (yes, really), next month. It looks to be the best thing they’ve done since Tin Planet in 1998. To commemorate this, and as a challenge, I’m doing a series of miniblogs about Asperger’s Syndrome – some personal, some advice. Each will be around 600 to 800 words. Moreover, each post is going to be named after a Space song and have a different theme. Here’s the list:

1. If It’s Real: yes, it is a disability
2. Neighbourhood: moving house
3. Mr Psycho: emotional difficulties
4. Female Of The Species: not fitting in with other girls
5. No One Understands: the diagnosis
6. Dark Clouds: memories of Barcelona
7. Blow Your Cover: first sexual relationship
8. Influenza: getting ME
9. Life Of A Miser: managing money and other household things
10. Avenging Angels: relationship with my father
11. The Man: coping at work
12. Disco Dolly: festival tips
13. Fran In Japan: role models outside the family
14. I Am Unlike A Lifeform You’ve Ever Met: on books and the imaginary world
15. Bastard Me Bastard You: unwanted attention from men
16. Numb The Doubt: on drugs
17. Everybody In The Madhouse: primary school
18. Diary Of A Wimp: obsessive behaviour
19. Gravity: Dad’s death
20. Juno 54: relationship with music
21. Hell Of A Girl: bisexuality
22. Suburban Rock ‘n’ Roll: the Chester years
23. The English Language Let Me Down: speech and language
24. Paranoid 6teen: relationship with my brother
25. Crying On The Webcam: self-injury and stigma
26. Quiet Beach: the overdoses
27. Fortune Teller: on being childfree
28. Armageddon: on parties
29. Attack Of The Mutant 50ft Kebab: love-hate relationship with food
30. Falling In Love Again: relationship with the Perrys (my current stepdad and his teenage kids, Alice and Tom)
31. Guestlist To Hell: the people who keep me alive

I have my friend Chloe to thank for this – I found out about NaBloPoMo through her, and I wanted to see if I could do a challenge of some kind and stick to it for a month. This year is going to be about challenges; I’m going to Barcelona again, without any family members in the background this time, I’m doing the 5:2 diet, I’m going to go and see Everton play at some point (football matches are hard to deal with), and I’m going to be doing the Race for Life in my father’s memory, along with two friends, Topher and Sarah, and their dogs, Starbuck and Semtex (and we will be walking it, as I have ME and Semtex is a bulldog, a breed not known for their athletic skills!) I also, finances depending, may go to Berlin in the autumn / winter. The horrible Schonefeld experience did not put me off, and there’s so much of the city yet to be seen.

I apologise in advance to any family members I might upset with this. Also, out of consideration to readers, I will be posting trigger warnings / content notes on posts that contain potentially triggering content (e.g. sexual assault and eating disorders).

January 1, 2014

And 2014 begins.

I am sitting here, in my kitchen, playing Farm Heroes. The happy, smiling faces of the cartoon fruit and vegetables make me sad for some reason. I think it’s because I’m feeling a little flat and empty after spending time with my friends and family. Post-Christmas comedown and post-exertional fatigue (I’ve not been exercising, but I have been busy) has kicked in; I just want to sleep. I’m amazed I even can sum up the brain power to type this. I didn’t go out last night because of it. I just stayed in and watched Wayne’s World.

So, 2013. It’s been hit and miss. On the plus side, I met new people, went to Barcelona alone and had a fantastic time at Primavera. I became a lot closer to my stepdad, not that we weren’t in the first place, had a fun time with the family at Ness Gardens (rain notwithstanding), got to see a football match for the first time in years (it was Cambridge United, not Everton), and saw more Space gigs than you can shake a stick at. The last gig I saw was on Halloween in London, and after talking to him backstage, Tommy Scott got me to come onstage with him for The Ballad Of Tom Jones. We both hammed it up, and afterwards, he gave me a hug and told me I’d done the song proud, while Franny Griffiths smiled at me and Phil Hartley also gave me a hug backstage, and the audience were great. I still can’t quite believe it happened.

On the down side, my best mate moved to Oxford, I had a horrible panic attack at a Space gig, my mum went into rehab, I stopped going to synagogue because choir stressed me out, and I had to deal with problems at work, delusions and paranoia. A good deal of it is to do with Space. I find some of the band very hard to read and worry that they dislike me and do not appreciate me coming backstage, although Franny did say at the Hebden Bridge gig that he was cool with it. Then again, they haven’t told me to fuck off, Franny actually got somewhat irritated with me when I called myself a ‘dumb whore’ and told me to stop putting myself down, and the one time I did get kicked out of the dressing room, all the other fans who were there got kicked out too as the band were getting changed, which is fair enough. I also rely on alcohol as a coping mechanism. It’s not a case of being starstruck; I know Space are only human. It’s more a case of worrying a lot about appropriate or inappropriate behaviour and how other people might see me.

Communication is a problem I have in general, and when I’m able to gather my thoughts more coherently, I’ll blog on it, because sometimes it’s like trying to navigate my way through a forest, blindfolded. I’m not always good at expressing myself, I can’t always detect nuance and like Katniss Everdeen in The Hunger Games, I instantly suspect the worst of people and find it hard to trust others. I have to remember that just because some people hated me behind my back, and were only afraid to tell me how they really felt to my face because they knew I was mentally ill and feared I would flip out, does not mean everyone is like that.

I have plans for this year. I’ll be going to Space in March, at London, Liverpool and Manchester, and aim to get over my fear and paranoia. I’ve also got Nine Inch Nails and Primavera Sound coming up – I’ll be going back to Barcelona – and I plan to go down to Cambridge for my birthday, as well as visiting my auntie Chris, my dad’s sister, at the end of this month. I may well be going to Berlin as well – I haven’t decided yet. Hopefully there will not be a repeat of the unpleasant experience at Schonfeld Airport.

Also, I had a bit of a meltdown at Christmas when I got into an argument with my mum. She wants to get me a cleaner, as I have trouble taking care of my flat. I admit I have mixed feelings about this; I’m worried some of my friends will hate me for it and call me a spoiled brat, and I feel guilty for not being able to clean as much as I would like. I admit it; I am not a tidy person. I put cardboard and plastic in the recycling bins, I cook and wash the dishes, I change my sheets weekly and do my laundry regularly, I hoover, I clean the lav (again, not as much as I should), but it’s not enough. I haven’t cleaned the skirting boards, I barely wash the floors or dust. Mopping makes my back ache, as does any work on my knees. I think it’s a case of feeling like I can’t be that bad, that I’m not disabled to the extent that others are and I’m privileged and it could be a lot worse…and then the tiredness hits and I can barely think straight and I just want to crawl into bed. There’s a lot of internalised ableism and foolish pride going on as well. I’m still ashamed to admit I need help in some areas. When a lot of your friends are mentally ill and/or more understanding than most people, you become so used to that world that you almost forget how the majority of people see you. Cutting my arms and pouring boiling water over them at work seems normal to me, as does throwing up in the toilet after a binge…but to other people, it can come across as a bit scary.

I’m staying on the Venlafaxine for the time being. I’m not 100%, but let’s be realistic, I’m probably going to be on meds for the rest of my life. Still, I have some control over the delusions; when the Liverpool fans on my Facebook and Twitter sneer at Evertonians, I have to force myself to remember that it’s not personal and they’re not trying to get me, for instance. Hopefully it will get better. Fingers crossed.

July 26, 2013

Barcelona. Believe.

Back in May, I went to the Primavera Sound Festival in Barcelona. My brother has been going for years, and although it’s less mainstream than what I’m used to (Reading and Glastonbury), I thought about going myself last year, and after a moment of self-pity on New Year’s Eve, I thought, “Oh, fuck it,” and booked a ticket. There were three reasons for this. Firstly, Blur – who I’ve loved since I was in primary school – were playing. Secondly, up until Belfast and Berlin last year, I hadn’t had a holiday since 2005. Thirdly, and most important, I wanted to see if I could manage in a foreign country, on my own, without my mum or friends to help.

Of course, Barcelona is not on the other side of the world, it is only two hours’ plane journey away, and there were people I knew who were in the city at the same time: friends from home, my auntie and uncle, and my brother (though he was the only one I ended up seeing). But it was still a big leap. Although I can read Spanish, I cannot speak it as well as German. I had to sort out accommodation and flights on my own (my mum and her boyfriend arranged everything in Berlin, and I had the help of two friends when sorting things out for Belfast). I would be staying in a youth hostel, sharing a small room with strange people. I had stayed in hostels before, but generally I’d been with people I knew. I would be managing my own finances and negotiating a festival site and the Metro system, and I would be adjusting my body clock. While bands at British festivals start around midday, the bands at Primavera do not generally start until 4pm, and the headliners don’t come on until the wee small hours. Blur, for instance, were on at 1:30am. My Bloody Valentine, who I didn’t see, were on even later. (As it happens, I ended up pulling an all-nighter on the Friday, as I wanted to see Blur, them being the main reason I was there, and I had to stay on the site as the metro stopped around 2am, but luckily there were bands on until 5am). I would become a nocturnal creature.

I am proud to say that I did it. I spent a week in Barcelona, staying in a youth hostel I’d found online that had got good reviews (it’s the Albareda Youth Hostel, if anyone’s interested, and I would definitely recommend it). I lived mainly on cheese sandwiches from Lidl, pizza and the odd bit of festival food – not super healthy, but I’m not keen on cooking in other people’s kitchens as I don’t know where stuff is. I pre-booked a travel card and managed to get to grips with the metro (being in Berlin helped). In the evenings, I hung out with my brother and his mates at the festival and got mildly twatted on some gin they’d sneaked in, as well as going for a drink with them before it started. I spent most of the days sleeping and reading, as I was too tired to do much sightseeing (except for Parc Guell, as I hadn’t seen it before, and I nearly got lost in the damn place, but managed to find another entrance after wandering around a residential area for a bit). I was introduced to the joys of the Breeders, Neko Case, the Wedding Present, Neurosis, Evans The Death, The Knife, and the Wu-Tang Clan (and I even managed to get near to the front without having a panic attack), and watched Blur do a 13-centric set. Parc del Forum is by the sea, and listening to Blur doing This Is A Low as the sea crashed on the rocks in the background was, frankly, magical.

The only major panic I had was finding out I’d left my email from Seetickets back at the hostel when I was going to pick up my ticket (though I managed it the next day, and I found out where Parc del Forum was, so it wasn’t a wasted journey) and getting to the airport on the way back, as I’d gotten confused about train times and had to hail a taxi, and I did have some language problems as Spanish does not come naturally to me, and I got into an argument with a rude idiot at Barcelona Airport, but I didn’t have anything like the problems I had at Schonefeld. My body was out of kilter for a week – standing for ages did not help, and it was particularly bad during The Knife’s early morning set on Saturday when I wanted to dance, but everything from the waist down hurt. Still, I did it. I managed in a foreign country on my own. I beat myself up a lot, but for once, I am actually quite proud of myself, because I learned that I can manage. I am not totally helpless. Being able to book accommodation and flights and time everything and manage my finances for a week is a huge step for me. It required massive amounts of planning and research and talking to people who’d been to the city, including Franny Griffiths, the keyboard player from Space and a former resident who knew the city like the back of his hand. It all paid off. I came home slightly less pasty than before and with a bag full of stinking socks and a well-thumbed copy of Tori Amos’ Piece By Piece, which kept me entertained during my down time.

If I can do this, who knows what I can do next? I could go to Berlin, another city I love, on my own (and if I go to Schonefeld Airport, at least I’ll be prepared for dealing with evil airport staff). I could go to a place where I don’t speak the language, or that’s further away from home – I’ve been talking about going to Thailand with one of my mates in a couple of years, when both of us are better off. I appreciate not everyone with Asperger’s can push themselves out of their comfort zones, and it isn’t easy. But I had to do it. I had to know what I am capable of, and I had to prove to myself that I can manage on my own, and I did.

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