Just because I am disabled does not entitle you to make stupid comments

As it’s Blog Against Disablism Day, I’m going to repost some comments that I originally posted on Twitter under the #heardwhilstdisabled tag. These are all things that have been said to me as a result of my having ME.

“You’re too young to be so tired” – said by countless people. Yes, I know it’s bizarre for someone in her late twenties to be tired all the time, but it does happen. There are people younger than me whose ME is so bad they can’t even feed themselves. There are people who’ve died from ME, for fuck’s sake, some of whom are around my age. It also makes me feel awkward when I see older people than me who can still make it to synagogue while I’m at home resting. It makes me feel like I’m not trying hard enough.

“I have to do all this work because you’re ill” – or words to that effect, said by one of my colleagues. So they can’t use me as cheap cover because I only work part-time? That’s not my fault. Would they rather I just worked myself into the ground and ended up having to leave? I’m not even supposed to be doing work for the Manchester office anyway. I’m not employed by them.

“I wish I could go home early like you” – said to me by the same colleague. You know what I do when I leave work? I go home – sometimes after stopping off at Sainsbury’s or my local greengrocer to buy food – have lunch, maybe go online for a bit, and then sleep for a few hours. If you want to go home early, you can take my reduced wages and my disability while you’re at it. Have fun!

“You’re having a relapse? Well, UN-relapse then” – said to me by a woman at synagogue when I explained that I didn’t know if I was going to be available that weekend because I was having a bad week healthwise. If only it were that simple. This is one of the reasons why I’m very seriously considering quitting the synagogue choir – I hate not being able to give a straight answer as to whether I’ll be able to come on Saturdays. How will I know?

“Stop yawning, it’s fucking annoying. Do some work if you’re so bored” – said to me by a colleague. I must point out that I was actually typing an attendance note at the time. I had also not had much sleep. Yawning is an involuntary thing for me, and it is not a sign of boredom, and no, you are not being funny when you ask me if you’re keeping me awake.

“You should do (insert exercise here), it’ll make you feel better / you’ll be fitter if you do more exercise” – said to me by various people. No, I do not want to go jogging / horse riding / Zumba dancing with you. I have to be careful how much exercise I do. I did pole dancing classes for a bit, but the last time I went, I had to sit down because I felt so dizzy and sick, not to mention the strain it puts on my body. I do exercise – I go to the gym, I swim sometimes – but if I do too much, it can set me back. When I went to Berlin last year, the amount of walking I did set me back for a good few days afterwards. Only I can know what’s right for my body.

These are all things that have been said to me as a result of my having Asperger’s Syndrome.

“Screaming kids make you go into sensory overload? Stop making it about you” – on a feminist blog entry about letting children into adult spaces, where some disabled people said in the comments that they couldn’t handle screaming children because it made them physically sick, something that happens to me (not to mention that screaming is a kind of trigger). Because only children have special needs, it’s not like adults have them or anything. When a kid screams its head off, it might be autistic and we shouldn’t judge, but autistic adults? Fuck off. What’s particularly irony is that these people claim to be anti-ablism. So, erm, why are you having a go at disabled people then? We exist too.

“You can’t have Asperger’s, you’re doing a languages degree” – said to me by a doctor when I was a student. Because people with Asperger’s only do maths or science, it’s not like creative or humanities types with Asperger’s exist (Gary Numan, Paddy Considine and Ladyhawke would like a word). This is one reason why I am not a fan of Rain Man, because people think we all act like that. Yes, a lot of Asperger’s types are good at maths and science, but it doesn’t mean we all are, plus I come from a family full of people who are good at history, languages and English.

“It may feel like a bereavement” – said to my mum when I was diagnosed with Asperger’s for the first time, aged ten. She did not take this comment very well.

And I’m one of the lucky ones. I’m not visibly disabled; I don’t have a cane, a dog, a wheelchair, a hearing aid or missing limbs. I’m not claiming benefits and being called a scrounger by local idiots who assume I must be on the take. I’ve never, kina hora, been beaten up for being disabled (I’ve been called names on the internet, but this is the internet we’re talking here). Other people, however, have, and the constant stigmatisation of the disabled in this country by our government and our gutter press just contributes to hate crimes against us. After all, we’re just faking it (especially if we have an invisible illness), we’re making it up for attention (especially if we have Asperger’s, BPD, bipolar disorder or any other illness du jour that naive self-diagnosing teens on the internet who’ve done a personality test think they have), we’re scroungers and I know someone who had a disability and still managed to go to work / work full-time / climb Everest / whatever. The fact that George Osborne parked his car in a disabled space sums up just what he and his government think of us, and it is not pleasant.

(I Don’t Want To Go To) Coventry

It’s April, Autism Awareness Month, and funnily enough, I’m sitting here typing this after having a major meltdown at work. We’re talking tears, animal wails, hyperventilation, hallucinations, the whole fun package. For obvious reasons, I’m not going to go into details about my job, but I will say that I’ve been dealing with something that has been causing me a lot of unhappiness recently, something that resulted in me going backstage at a Space gig in Leeds with scarred arms, and pouring boiling water on my arm two days later. It’s a technique that’s been used against me in the past by countless people. It’s ostracisation.

I am not psychic. I cannot always read faces or voices, so it stands to reason that mindreading is beyond my capabilities. When someone is angry with me and I don’t know why, it makes me paranoid as hell. It makes me wonder what I’ve done and the ability I have to trust other people gets slowly chipped away. When they refuse to speak to me, even if it’s in a situation where not talking to me causes even more problems – i.e. a work situation where people are required to communicate with each other. As a result of being ostracised at work, I got into trouble. Again, I can’t go into details. Because work was where I had the meltdown, it’s going to happen again. I spent most of last week and the week before that sitting in silence, not knowing what I’d done. The last time it happened, I was told that I had been rude and not apologised – I know for a fact I had apologised – and I ended up crying and begging for forgiveness, and later cutting myself when I got home.

Going silent on me is one of the cruellest things a person can do. Talking to a person refusing to speak to me is like battering on a door repeatedly, until my fists are bleeding. I remember after I’d taken an overdose in 2005, and when I walked into a room where my housemates were, they made excuses and walked out. A week or so earlier, when I came home from the hospital and rang the doorbell, one of them let me in, glared at me and just walked up the stairs without a word. Not one of them asked how I was. They avoided me after the overdose, even after I thought I’d made some headway, and soon after, I moved out.

I hate being left out of things. It’s happened to me since I was a kid. I was always standing on the fringe of groups in high school and was never really a part of any of them. So many people I thought were my friends actually hated me. I remember the pain of being one of the few people in my year who wasn’t invited to a popular girl’s party, and hearing everyone who had gone talking about it and what a laugh it was. This happened in Year Nine and in Sixth Form – two different girls, two different parties, and the same situation. I remember sitting in the common room in the area where the popular crowd sat, and although I was friends with some of them, I remember a big group of them dancing in a circle in Love Street, with me on the fringe, and one night, one of them telling me to my face that no-one liked me. When I got older and went to uni, the same thing happened – not just with my housemates, but with people in the Rock Soc as well, and because I am so clueless about socialising, I didn’t know whether my attempts to integrate were working or not. Trying to navigate the Barcelona Metro is as easy as breathing, compared to trying to navigate interpersonal communication.

When a colleague makes a big point of ignoring me while talking to everyone else, it fucking hurts. It makes me feel so tiny, so insignificant, so invisible. It reminds me of how I am an outsider and how I will never fit in. I’m back in the common room. I’m back in Jilly’s Rockworld, watching the man I obsessed over and his group of friends hanging out, knowing that if I go over there, he’ll make a big point of walking away. Sometimes I want to stand in front of them and slash a vein and spray my blood over their face, just to remind them that I am there, since I suppose the idea behind ostracisation is, ‘if I pretend Lotte isn’t there, maybe she’ll disappear’. I wish I could, but sadly, it’s not physically possible for me to just fade away into the ether. I am not a ghost. I am a fucking human being. No amount of ignoring me is going to make me disappear.

You’d think adults would know better, but some people never leave high school, it seems. I try not to think about it too much – I left over eleven years ago – but I have a lot of trust issues as a result of high school and there are certain things I react to badly, and ostracisation is one of them. OK, so it’s not anti-Semitic abuse or arse-pinching or nasty notes on my desk, but it is still a form of bullying, and it hurts. It hurts seeing people having a laugh and knowing you will never be accepted into their group, even if said people all actually hate each other. It makes me want to scream and shout and smash things and hurt myself.

I am currently looking for other jobs as a result and hoping to go into translation work. My office is small and open plan, a hellish place with someone for Asperger’s Syndrome, but that’s for another post. I know I should be grateful for having a job in these times, but when that job is causing me to come home feeling miserable and barely able to function, it’s time to get out.

On Space

Amazingly, this is one of the hardest posts I’ve written yet, not least because the people concerned may see this, and hopefully it won’t freak them out – but after last night, it’s something I need to get off my chest.

A bit of background: as my close friends and family will know, having listened to me playing their music and going on about them for years, one of my biggest obsessions is the Liverpool band Space. They were fairly big in the mid-to-late ’90s, their most well-known song being Female Of The Species, and they split up in 2005, only to reform near the end of 2011. This month, they’ve been touring, and I was lucky enough to see them in London – as my brother lives down there and a friend of his would be at the gig, and I thought it would be nice to have a mini reunion – and Manchester. I went to London last Thursday, and Manchester last night.

I am Facebook friends with two of the band members – Tommy Scott, the singer, guitarist and main songwriter, and Franny Griffiths, one of the two keyboardists and the only original member alongside Tommy in the current line-up – and they knew I was going to be at both gigs. They are also my two favourite band members; Tommy is a major influence on me as a songwriter, and Franny is one of my musical heroes and two keyboardists, the other being Regina Spektor, who inspired me to keep up with the piano and mess around with keyboards. I even arranged one of Franny’s songs, Fran In Japan, for piano for my GCSE Music exam, and got an A (the flute piece my teacher wanted me to play would have got me a B). I have met them a few times and both of them have been nothing short of lovely. Franny was even kind enough to put up with me acting like a deranged fangirl at the Unity Theatre gig in 2002, machine-gunning him with questions and talking non-stop. Even after we’d had an argument on the Space forums over a song I hated, when I met the band at the Metro in London a few months later, it was like nothing had happened.

I do not worship them. They are people, not gods. They have their flaws and I don’t agree with everything they say or like every song they’ve done. But it is no exaggeration when I say that Space saved my life in high school. Spiders, their first album, came out in 1996, when I would have been in Year 8, and Tin Planet came out when I was in Year 9. The first five years of school were, frankly, hell.

In short, I was a weird kid in a new town who had no real friends – the girls I thought were my friends were laughing at me behind my back, and the one friend I did have eventually turned on me – and I didn’t know who to trust. I was made fun of for not wearing my bag properly, for being a virgin, for my accent, my hair, my bad skin, my music taste, you name it. When I told my mother I wished she had never had me, I meant it. When I started cutting myself in 1999, I hated myself and everything that I was, and I wanted to punish myself for being a horrible flawed human being. I was jealous of my brother and desperate to please my mum and stepdad, and lonely as hell. Trite though it sounds, one of the things that really got me through those years was Space’s music. I would come home and put Tin Planet on and for a while, I’d be able to escape. Even though none of them were outcasts at school, they were outcasts on the music scene; they looked like a guitar band, but weren’t, Tommy was inspired by cartoons and B-movies instead of the Beatles, and they sang about serial killers and stalkers and Charlie Manson, not pulling girls and getting pissed. When I saw them for the first time in 1998, I didn’t come down for days. When I met them four years later, it was like a dream come true, and I wanted to bottle the night and replay it forever. I was terrified that Franny would be rude or arsey, even though my then friend Jo, who knew the band, assured me he was the opposite. Thankfully, she was right.

Last night, the gig was one of the most intense Space gigs I had ever been to – it was in a small venue, where we were practically nose to nose with the band, and my ears are ringing even now. Tommy hugged me during Female Of The Species and later, invited me backstage, and I went and sat in the tiny backstage bit with him and Franny, while the other three band members, Allan the drummer, Phil the bassist and Ryan the second keyboardist, wandered in and out. As Tommy had to go back to Chester, I spent most of the time talking to Franny – and Phil and his girlfriend Emma, to a lesser extent – and stealing his JD and Coke, and I finally got round to telling him what I’d wanted to say to Space for years, the one reason why I loved them so much in 1998: that Avenging Angels, released four and a half years after my father had died, was a huge coping mechanism for me when I found out that Tommy had written it about his own father. I had always believed that Dad was watching over me, and knowing Tommy felt the same way was a huge comfort. If you’re reading this, Tommy, thank you so much for writing that song, and Bad Days too. It means more to me than I can express here.

Sitting with the band backstage and talking to Franny, one of the people who’s influenced me the most as a musician, for ages about Spain and Catatonia and whatever was magical, and I’m really grateful to the guys for the invite. I walked out scarcely believing it had happened, although my brandy and JD-induced hangover is proof it did. I know people will sneer at me, a mentally ill woman of nearly thirty with no boyfriend who’s slavishly following a band of aging has-beens around the country…even if they are aging has-beens, they’re MY fucking aging has-beens, dammit, and no-one will ever take what I had last night away from me. For has-beens, they are very loved. I doubt Phil was kidding when he said it was the best gig of the tour. The audience adored them last night. Tommy was very game, posing for photo after photo after photo with loads of audience members, and he was the same at London. It must be very gratifying to know that, after all these years in the wilderness, there are still people who love your music.

So thank you, Tommy Scott, Franny Griffiths, Phil Hartley, Ryan Clarke, and Allan Jones – and not forgetting Andy Parle (RIP), Jamie Murphy, Yorkie and Leon Caffrey, the latter three of whom I have also met. You have made this stupid fangirl this little screw-up very happy for years, your music got me through tough times, and I cannot thank you enough. You’ve been great. Bring on the next tour.

No, triggering a meltdown is NOT a good idea.

I am not going to blog about the recent shootings in the US and how the killer is reported to have Asperger’s Syndrome. I don’t feel qualified enough to comment on it, and there are many American bloggers on the spectrum who are better equipped to talk about it than I am. All I will say is that I will never ever understand the mentality of someone who goes into a school and shoots people, many of them little kids, who did absolutely nothing whatsoever to deserve it. May their memories be a blessing.

While reading up on the matter, I was linked to a blog by an abuse survivor on the spectrum who mentioned that Autism Speaks suggest triggering a person on the spectrum into having a meltdown, and documenting it. I cannot for the life of me get how this is a good idea. Deliberately triggering someone into having a meltdown is just cruel. Meltdowns are horrible, exhausting and frightening. I had a particularly nasty one last month, in Berlin.

I have an interest in German history, having studied loads of it for GCSE and my degree, and my mum suggested we go to Berlin as a birthday present. It wound up with Richard, her boyfriend – who is a history teacher and has done trips there, so he knows the city fairly well – his two kids and my brother, who had been to Berlin before, all coming with us, and I’m not complaining. It was lovely to have the extra company, and although the amount of history I took in bordered on information overload and my feet were killing me after climbing the Bundestag building, I am not complaining. I had a fantastic time. That is, until we got to Schonefeld Airport.

Mum had flu and had been sick, and we had had to wait around for some time for check-in and it was late at night, so I was not exactly in the best of moods, but when I went through the metal detector, it went off. I’d taken off my boots and taken my iPod out of my pocket, but what I didn’t realise is that I was supposed to take everything out of my pockets. I genuinely had no idea, as I don’t fly much. I got sent back and forth through the damn thing, and apologised. The airport staff laughed at me and took the piss out of me in German. When I absent-mindedly placed my hand on the gate, one of them shouted at me not to touch it. Eventually, when the alarm went off again, they brought the scanner out and cased my body, and when they found meds in my pocket, I explained it was medicine and was ordered to take everything out, my copy of Cider With Roadies included, and put them in the tray. My patience was getting seriously frazzled. I was ordered to put my foot on a step after setting the alarm off again, and when I got felt up, it was too much and something just snapped.

The result was not pretty. I was terrified. I heard this horrible wailing noise, like a sick dog, and realised it was me. People were staring at me. Everything seemed brighter and noiser and more in my face than before. I was bent over, my face in my hands, my body shaking. I could barely do up my shoelaces. I had lost control. I felt like a frightened animal trapped in a cage, running around in circles and biting its own tail. I felt as though I was being attacked from all sides by a horde of eldritch abominations who screamed in my ear and clawed and pawed at my body and tried to tear me into a thousand pieces, and there was no way out. This may sound funny, but it wasn’t. Luckily, Richard, Mum and the kids were wonderful and all made sure I was OK. So thank you to them, and a big fuck you to the airport staff for laughing at me and humiliating me and making me feel less than human. It took me ages to calm down because I was so shaken. Airports are not fun for me at the best of times – all that queueing, all that being shouted at, all those delays and being stuck in tiny cramped spaces.

Meltdowns take so much energy out of me. If someone documented me having a meltdown, even with the best of intentions, I’d never forgive them – I have little self-confidence as it is, and the idea of me freaking out being documented and shown to strangers is absolutely terrifying and humiliating. When I have meltdowns at work – a particularly bad one resulted in me smashing a glass in the toilet and slashing up my arm, and another one ended with me smashing my head against a wall – I feel like the biggest fool ever afterwards. I feel stupid and weak and embarrassed for losing control, and wonder what they’re all saying about me behind my back. She’s crazy. She’s a nutjob. You can’t trust her with anything or she’ll freak. She’s a spoilt bitch who throws tantrums. Isn’t she a bit old to be acting like that? I wouldn’t have wanted to be one of the people at Schonefeld, watching a grown woman exhibiting the sort of behaviour you’d expect from a toddler. But when it gets too much, that is what happens, and the scary thing is that I don’t always remember it. There are gaps. Apparently, for people who have anxiety and depression-related illnesses, depersonalisation is quite common – I’ll do things and it won’t be me doing them, it’ll be an outside force controlling my body, and then I’ll regain control and wonder why people are staring and why my forehead hurts.

I didn’t let the airport incident spoil a holiday, though it did come close. I just have to remember in future to take everything out of my pockets, especially metal and electrical items, to take off my coat and shoes, and then I will hopefully not have to deal with that again. Because once was enough.

This is going to be a political post, sorry.

I’ve neglected this blog for too long, especially recently as. I need to start posting again, particularly as I spent the weekend at my mum’s house, reading a boxful of letters and cards and obituaries that she kept after Dad died. I plan to get in touch with two of the writers of the obituaries, as they are old friends who we haven’t heard from for years; I have already found one through Linkedin. Thank G-d for the internet. Anyway, being reminded of how respected my father was in matters energy, and the way his writing touched so many people, inspired me to write again. The other thing that inspires me to write this blogpost is anger.

I am extremely grateful that I am able to work. Compared to other people with Asperger’s, and certainly other people with ME, I am privileged as hell. I am able to hold down a job, take care of myself – showering, making sure I have clean clothes, etc. – talk to people and manage to spend four hours a day working without feeling sick (most of the time). I am able to cope with minor changes in routine and I spend my afternoons resting. One of my greatest fears is my health deteriorating, because I worry that even if I was bedridden, this government would try to force me into work. After all, my mum’s friend Lizzie has severe back problems, caused by a lifetime of working with disabled children, that forced her to give up her job. She is barely mobile and can only walk short distances. And yet, her benefits were stopped and she was declared fit to work, even though she is no way near fit. Lizzie is not a unique case by far.

I’ve subscribed to the black triangle campaign on Facebook and day after day, I read horror story after horror story of people who are barely able to move or take care of themselves losing their benefits. Some have committed suicide. I wonder how many more people will die, either naturally or through taking their own lives, as a result of this.

I have always liked Elvis Costello’s album Spike, which was played to me throughout my childhood, and one of my favourite songs on that album is ‘Tramp The Dirt Down’, an anti-Thatcher tirade that makes me cry whenever I hear or cover it. The line that makes me well up is ‘I never thought for a moment that human life could be so cheap’. Never has it rang so true. Crazy though this sounds, I sometimes wonder if disabled people are even considered human by the current government. Do they even care if we die? After all, we’re expendable. We’re a burden, a drain on society, and most of us are probably faking it anyway, especially if we have an invisible illness – at least, that’s what the papers claim, and then we wonder why hate crimes against disabled people are on the rise. There were 2095 crimes against disabled people recorded last year, compared to 1559 in 2010. That’s pretty worrying. How many will there be this year? Even if the Paralympics does raise the profile of disabled people like never before, will it be enough?

When George Osborne presented medals at the Paralympics – which were sponsored by ATOS, which is kind up there with, say, McDonalds supporting an event promoting kindness to animals – I thought, “Well, Chris Morris, you and your fellow satirists can retire now. Satire is dead.” It is both darkly hilarious and disgusting to see the very people who are taking benefits away from disabled people, Paralympic athletes included, giving medals to disabled people and sponsoring an event concerning them. For two weeks, disabled people are heroes, inspirational figures, and then it’s back to normal. I’m not having a go at the Paralympic athletes. I think they’re incredible and they deserve acclaim for their hard work, just like their able-bodied counterparts. I just find the hypocrisy of the government around the Paralympics absolutely sickening, just like Cameron praising the Olympic athletes while funding towards sporting activities is being cut.

Disabled people deserve better than this. The many should not be punished for the actions of the few idiots who do fake disability. It is not practical to have people basically coerced into working jobs that they are not physically capable of doing, especially if said jobs only make them worse. And with jobs disappearing due to cuts and becoming harder and harder to obtain, what is left for the people taken off benefits? Are they just expected to starve to death? Does Cameron think relatives will help them out or something? I’m lucky enough to have a great network of relatives who will take care of me – my mum and auntie took turns looking after me in the week after my eye operation, and made sure I was OK – but not everyone else is. Maybe I’m sounding hysterical, but I’m tired – I’ve had a bit of a flare-up this week – and I’m angry. I miss my dad like crazy but the one good thing about his death is that he’s not around to see what this country is turning into. I just hope to G-d that we never lose the NHS and become like the US; I have heard so many horror stories from American friends, and it terrifies me to think that, in the event of an operation like my last one, I’d be forking out thousands of pounds, which I do not have.

While this lot are in control, I pray that my health does not get worse. I have an invisible illness, and good days and bad days. Sometimes I can get through my shifts OK, but on other days, like today, I’m not so lucky. My Asperger’s shouldn’t hold me back too much, but my ME does, and although Asperger’s is a lot more in the mainstream than it was in 1994, so many people still think ME is fake. Invisible illnesses are more complex than they seem. They are not black and white. Just because I have good days does not mean I am faking. Hopefully, it will never come to the point where I am too ill to work. Hopefully. The consequences are too horrible to think about.

Someone saved my life tonight

As it’s Mother’s Day this weekend, Time To Change have been publishing blog entries about people with mental health difficulties and their relationships with their mothers, good or bad. I thought I’d add my bit, for one simple reason.

My mother is the main reason why I am alive today.

I’m not just saying that, either. My mother is my main reason to stay alive, to keep on fighting the depression and Aspergers and the nasty little voice in my head that tells me to harm myself. My mother gives me hope and lifts me up when I’m down and always has my back. My mother understands what it’s like to be depressed, having suffered from depression herself. She’s not going to tell me to pull myself together, because she’s had people say the same thing to her, and as we both know, that is not how depression works.

When I was a kid, Mum constantly taught me social skills, and although I felt like she was always finding fault with me, in retrospect, it paid off. When I had a breakdown in 2005 and nearly dropped out of university, Mum communicated with the disability department on my behalf; she helped get me the support I needed, and it was her who persuaded me to get out of the toxic house situation I lived in and move into temporary accommodation. She rang the Council last year on my behalf when I was panicking after receiving a phone call from bailiffs about unpaid council tax. She’s sat with me in doctor’s appointments and put me up when I’ve been vulnerable and afraid to be alone. We held hands at my paternal gran’s funeral, and I calmed her down when she had a panic attack when my brother didn’t come home on Christmas Day in 2010 (he was OK, thank G-d).

We haven’t always had an easy relationship, and maybe I’ll write about that some day. I got on better with Dad, and when he died, I had to learn to get on better with her. At times I felt like I could never do anything right, that she was disappointed because I wasn’t into normal girl stuff and that I wasn’t the daughter she’d wanted, that she wanted someone she could dress up and discuss make-up and clothes with, and got someone who was more into music and books. Sometimes I wondered if she hated me. She’s made me cry and I’ve made her cry. I’m not proud of that. I admit I wasn’t a nice teenager. I might not have been into drink and drugs and fucking random guys, but I was a cutter, and I was constantly angry and rude and bitter and withdrawn, hiding in my bedroom for hours. And yes, like every other teenage girl, we had the usual ‘you’re not going out looking like that’ argument, or the argument about safe sex (the awkward moment when your mother finds a morning after pill booklet and asks everyone in your family whose it is, until you come clean). We had screaming rows. My brother just sat there and took it, but I always answered back. Sometimes I’d just scream, because I was too frustrated and upset to say anything.

However, since I went to university, things have changed a hell of a lot, probably because we’re not in each other’s faces, and we’re both happier and more stable now that my stepdad is out of our lives. I ring her every week because I know she gets lonely, and because we both need someone to vent to about our jobs, and it’s just nice to hear a familiar friendly voice at the other end of the phone. She comes and visits me regularly as I live nearer than my brother, who’s in London, and although at times I feel a bit embarrassed for being more dependent on her than other people my age would be, I accept now that I can’t take everything on on my own.

My biggest fear is my mum and brother dying. I’ve already lost my father, and I know no-one lives forever, but losing one of them would be like losing my arm. I love them both so much. It didn’t hit home to me how my mental health problems affected Mum until she rang up the university counsellor’s office in a panic because the night before, I’d made a comment about slitting my wrists. As soon as I rang her at the counsellor’s request to let her know I was OK, she started crying. I wanted to hit myself for frightening her so much.

When you get older, you start to realise that your parents need you too, and it is kind of weird when Mum asks me for advice, but at the same time I’m flattered that she respects my opinions enough to ask for them. Cliched though it is, I want to give something back. If I could repay Mum a tenth of what she’s done for me, I’d be happy. I can never repay her enough. She is my fucking rock. She’s always believed in me and I feel like she finally accepts me now. It’s been a rough ten or so years, but one good thing about the depression is that it’s brought us closer together. She’s always willing to learn more about Aspergers and will always tell me about someone with Aspergers who’s been on Radio 4 (I swear, that station seems to have some kind of fetish). I’m going to see Radiohead with her in October and I’m not ashamed at all – I’m glad I’ve got a mother with such great music taste.

Mum sometimes worries that she failed at raising us, but as far as I’m concerned, she did the best she could. She remarried because it felt like the right thing to do at the time, and none of us could have foreseen that it would end bitterly. I wish she’d stop beating herself up over that time. I can understand why she did it. She was lonely after Dad died and she just needed someone else in her life.

Look at me. I’m starting to tear up now. There’s so much more I could write, but I’ll save it for future entries. So there’s only one way to end this: thank you, Mum, thank you, thank you, thank you. I love you.

On suicide and Clarkson

This is not going to be an easy post to write. But a lot of people have been talking about Jeremy Clarkson’s comments on suicide recently – not to mention that one of my beloved Everton FC’s former players, Gary Speed, recently killed himself – and I thought I’d weigh in. What I am about to say will piss a lot of people off, but here goes: Clarkson may be a professional douchebag, and the way he expressed his sentiments was pretty disgusting, but I can see where he’s coming from. I’m not universalising my experiences; everyone has a different story to tell regarding their mental health, and everyone has different ways of dealing with it. I do not claim to speak for anyone but myself.

I have been suicidal, but even at my lowest, I would never have considered throwing myself in front of a train. It is one of the most disgusting and horrific ways a person can commit suicide. Train drivers have had to quit their jobs because of train deaths. Maybe it’s because I was raised to be considerate, maybe I’ve been conditioned into caring too much what people think, but I never once considered going down to Piccadilly or Oxford Road and leaping onto a track as a train was coming in, thereby ensuring some poor train driver would end up in therapy, while some unfortunate railworkers cleaned up the bits of me that had not been splattered all over the front of the train or screaming passengers. My reasoning always was that I didn’t want to involve strangers, I didn’t want to be a nuisance to people on trains, and I didn’t want a disgusting messy death that would end up on Rotten.com. Each time I’ve attempted suicide, it’s been with overdoses of pills. The only strangers getting involved would be the paramedics who would find my body, hopefully before it became one with the carpet. There would be no traumatised driver or bystanders. It would not be a grande geste, just a small, hopeless death in a flat somewhere in south Manchester. I would take my pills, post my goodbyes on Livejournal, lie down and wait to die.

I can joke about this because the alternative option is to cry about it. Sometimes I feel what I did was so pathetic, I have to laugh. I didn’t even take that many pills. The first time, I was swallowing Nurofen. The second time, I think it was anti-depressants, codeine and G-d knows what else. No stomach pumping was involved, although the second time, I ended up sleeping in the hospital with a drip in my arm to fight off the meds. I was given some counselling the next day and released. The first time, I ended up dropping out of university for the rest of the year because I simply could not cope anymore. The second time, I was worried I’d miss my presentation on Ludwig Mies van der Rohe in my Assent & Dissent in the Third Reich class.

I mention causing an inconvenience. The reason why I wanted to die in both cases is because I thought I was an inconvenience. The first time, I thought my flatmates would be happy if I was dead. Their behaviour towards me afterwards made me wonder if I had been right. The second time, I’d had a screaming argument with one of my bandmates at a gig. I removed myself from the house in 2005, and was thrown out of the band without my knowledge in 2007. I genuinely believed, both times, that they would be happy if I had died, and that I deserved to die because I was making them unhappy.

Not once did I think about the effect it would have on my family and friends. G-d knows how my friends must have felt when they discovered the suicide note on my Livejournal. Maybe, deep down, I didn’t really want to die and I was hoping they’d catch me before it was too late; I can’t recall clearly because my mind was such a mess at the time. But I thought, for some weird reason, I would have to be considerate and at least let people know I was going to die so they wouldn’t wonder where I was. (Luckily, the one bandmate who actually gave a shit about me called an ambulance, and my then boyfriend sat with me in the A&E. Even if I did dump him a year later, I’ll always be grateful to him for that night.) But I didn’t think about the impact it would have. I didn’t realise my mum would have to sit down because her legs were shaking, or that she’d ring the university counsellors in a panic because I’d said the night before that I wanted to slit my wrists. I didn’t realise my brother would be frightened of me going back to uni in case it happened again.

When I was suicidal, I was selfish. The only person I really thought about was myself. People with Aspergers are often accused of lacking empathy, and while I don’t lack empathy myself, I admit I didn’t consider people’s feelings at all. You don’t. All you can think about is wiping yourself out of existence. You don’t think about upcoming gigs or Naruto chapters or friends’ birthdays. You just want it all to stop. I do consider what I did to be selfish, albeit unintentionally – when you want to kill yourself, you’re hardly thinking rationally. It’s not like going down to the corner shop to buy milk. Even if it’s calculated and planned out, you are not yourself.

I don’t know if Clarkson’s ever lost a loved one to suicide, but I have friends who have, and family who’ve lived through continuous suicide attempts, and I can understand why they might be angry. To people who have never been suicidal, it’s hard to rationalise and explain. It can be seen as the ultimate act of selfishness, with no heed to how the people left behind might feel. I’m not saying “OMG people who kill themselves are bastards”. But if either attempt had worked, Mum and Jack would have been angry as well as sad, that someone they loved could hurt them so badly. G-d knows what was going through Mum’s head the first time I did it, besides ‘oh no, not Lotte too’.

I wonder how many people with Aspergers have resorted to suicide. Bear in mind that a lot of us cannot deal with strong feelings, and that we cut ourselves or smash things or hit people because it’s the only way we can express those feelings. When you’re suicidal, you’re overwhelmed with feelings and the only thing you hear is the screaming in your head and that one little voice telling you that all you have to do is pull the trigger, jump off the chair or onto the tracks, eat the pills, shove your head in the oven. You can’t talk to anyone because they won’t understand or you can’t articulate how you feel or you’re scared you’ll upset them, if you’re me.

I’ll probably write about this again in more detail. There is so much more I could say about the times that I’ve been suicidal. One thing I will say in conclusion is that suicide is still something a lot of people don’t understand, and maybe they never will. Clarkson, professional troll though he is, is one of those many people. To the rational-minded, it’s crazy and selfish, even cruel. But you’ve got to remember that it is not a thing that can easily be rationalised.

To any of my family reading this: I’m sorry if I upset you.

Ramblings of a jealous girl

I’m writing this during the Days of Awe, the period between Rosh Hashana and Yom Kippur when Jews take stock of ourselves and apologise to people we’ve wronged, in preparation for the big day of repentance on Yom Kippur. Throughout the day, we recite a laundry list of sins know as ‘Al Chet’, that begins ‘al cheit shechatanu le’fanecha….’ (for the sin we have committed before You…) and ends with ‘ve’al kulam, Eloah selichot, selach lanu, mechal lanu, kaper lanu’ (for all of these, L-rd our G-d, forgive us, pardon us, grant us atonement). There’s too many sins to mention, and even if I personally have not committed the ones on the list, I say Al Chet anyway, often having to bite my lip. It’s a very raw and painful festival to go through. All that self-examination gets you after a while, especially when you take things so literally and personally.

When I think of the seven deadly sins, I wonder what my trademark sin would be. Surprisingly, it’s not gluttony, wrath or sloth; it’s envy, or rather, jealousy. Pure, white-hot, unadulterated jealousy.

It all started when I was an infant and my mum brought my new baby brother home from the hospital. I reacted to this unwanted alien by scratching her face, and thus began nineteen or so years of sibling rivalry. Jack was and had everything I wanted to be and have. He had loads of friends. He was outgoing and happy and patient and, in retrospect, a lot nicer and less abrasive than me. When Mum and I argued, it would be a screaming match. When Mum and Jack argued, he’d sit back and take it. He was always going to parties, started drinking and doing drugs before I did, and had a constant stream of friends over, whereas I only had one or two close friends at a time, and spent most evenings at home alone. He also had a long-term girlfriend, back when I was doing my A-Levels, and I didn’t handle this well; I couldn’t bear the thought of my little brother growing up before me, having sex all the time while I was practically a virgin, being able to bring his girlfriend to family parties (including my eighteenth birthday, even though I wanted it to be family only but had to have her there anyway, something for which I resented him and my mother like hell) and being, well, normal. I had always been bullied for not having a sex life or a boyfriend, even back in year seven, and seeing Jack’s little unit only reinforced that he was the antithesis of me. It didn’t stop me wanting to hurt his girlfriend when she dumped him, however. The big sister instinct was always there, deep down.

In high school, I remember being jealous of all the girls who played lots of instruments, all of them well, and were always being invited to play in school concerts, and my mate Paul for being more intelligent than me. It didn’t help that I was compared to him by teachers, and that I had a huge crush on him and didn’t know how to deal with it, and when he got a girlfriend, I was jealous of her too. The poor guy wasn’t even aware I considered him to be my academic rival. One of the reasons why I cried upon only getting three As and one B at A-Level was that he had gotten four As. I was also jealous of my old friend from primary school, even though, looking back, I know she was going through a bad time back then and was having a lot of problems with her stepmum. I wished I led the exotic life she did, with all the fetish clubs and drinking and wild nights on the beach and boyfriends and drugs. I was jealous of the girls who got into clubs, despite being underage, and would come in with stories of their nights out at various shitty clubs – although once I started going clubbing myself when I was sixteen, that all changed.

When I went to university, I did a burlesque class, and I was jealous of other girls there who got gigs and got invited to perform at our teacher’s new club night, whereas I never got a slot. I was especially jealous of the ones who went professional and did photo shoots and performances all over the country. I was jealous of the girlfriend of the man I was obsessed with – who I will call Itachi – and jealous of him too, because he seemed to have it made, being popular and together and intelligent and knowing so much about politics and Judaism and Israel.

Even now, the green eyed monster is still there, although thankfully, I’m not jealous of Jack anymore (in fact, I really like his girlfriend).

I’m jealous of another mental health blogger, who I know in real life and who I won’t name, because she has more readers and support in the mental health blogging world, is more involved in her synagogue than I am with mine, got to play at fucking Limmud and apparently is a singer-songwriter, and does much more with her life than I do, while I barely have the spoons to even make synagogue services. It’s gotten so bad that I want to join the synagogue’s musical group just to compete with her.

I’m jealous of a female friend of mine because she’s fucked more girls than I have, and I don’t feel like a proper bisexual because I’ve never had sex with a woman (although I did have a relationship with one).

I’m jealous of other friends of mine who have better sex lives than me.

I’m jealous of my cousin for being thinner and prettier and more popular than me than I was at her age (though it helps that she has good genes).

It pains me to say this – and luckily, at the time, I realised this was going way, way too far and told myself to stop being so bloody stupid – but I was even jealous when I saw my mum hugging one of her boyfriend’s kids, because she was crying about her grandad, who had recently died.

The worst part of it is that most of these people don’t even deserve it, and aren’t aware of it. Jealousy, as one rabbi said, only hurts the jealous person. Linda Goodman talked of the scorpion stinging himself (and I have a Scorpio ascendant and a couple of planets in the sign!) and that’s me. I am the scorpion trying to sting others, yet I only sting myself.

According to one counsellor, Maxine Easton, who’s worked with families on the spectrum, some people with Aspergers tend to value what others DO, rather than what they ARE. They notice the achievements, but not the person who’s achieving them. For instance, Jack might have had a better life than me when we were teens, but he wasn’t and isn’t perfect, and he wasn’t happy all the time, and had a much worse relationship with my stepdad than I did. Jilly and Paula, Paul and Itachi’s girlfriends, were nice people and did not deserve being on the receiving end of jealousy (though I made damn sure I hid it around them). The grass is not always greener on the other side. Sometimes it has broken glass or snakes in it – and some of the people I was jealous of had a lot of snakes hiding in their grass.

I wish to G-d I could stop being jealous. I am getting better, but it is trying sometimes.

I wish I could articulate myself more

I wish I could articulate myself more when I go to the doctor and try to explain why I want a proper diagnosis.

I wish I could articulate myself more when well-meaning people tell me that exercise will make me better, and that I should try running or horse riding or soft ball or (insert physical activity here), even though I went swimming last week, did twenty laps, and was aching and tired afterwards.

I wish I didn’t trip up over my words, stutter like Porky Pig, forget my train of thought. I wish I could talk clearly and concisely and non-confusedly about the constant pain I’m in, and that ME is a real illness, and no, exercise does not make it better, it makes it worse. Actually, this applies to stuff generally. Put me in front of a computer and I can type for England. Put me in front of a phone and I get nervous and start stuttering and ‘um, er, er’-ing all over the place. I’ve always found writing easier than talking. It helps that I can go back over text and delete things, correct typos, change a bit of wording here or there – none of which I can do when I speak. I can put more thought into it over time rather than just thinking on the spot.

I’m going through a bad patch at the moment. Typing this is playing merry hell with my hands and wrists, and my legs are aching. For the past couple of weeks, I’ve been suffering from nasty joint and muscle pain. It’s like the feeling you get after a good workout at the gym, after lifting loads of weights…except I haven’t been to the gym. The only possible trigger is a recent holiday I went on to my old home of Brighton, and I did walk around quite a bit. I’m also getting more dizzy and nauseous. When I took my laundry out of the washing machine, I had to sit down for a while because I felt so sick.

To say I’m pissed off is an understatement. I am really, really fucking irritated and frustrated. Tomorrow, it’s Erev Rosh Hashana, the Jewish New Year. I sing in the choir at my synagogue, and I’ve missed tons of Saturday services and rehearsals due to illness. I was one of the subject of a rather nasty email sent around about people who never bother to show up, who get hysterical and only seem to want to appear when they’re on show. She was referring to panic attacks I’d had in past rehearsals, where I’d run out in tears because I was so frustrated and scared the concert or service would go horribly wrong. I did my best to justify myself, explaining I had an illness that meant I was often too tired and/or in too much pain to do much, but a fat lot of good it did me, and I ended up bursting into tears at our AGM and running out, although luckily most of the choir took my side and said that the woman who wrote the email was in the wrong. But none of them understand exactly what the hell is wrong with me and why I can’t do the whole Yom Kippur service, or why I miss so many Saturdays.

I’ve also had to turn down countless nights out over the past two years, work is getting harder and harder, I’m missing the belly dance classes I recently started because my body hurts too much, I’m terrified of gaining weight as I’ve recently started Slimming World, oje of my colleagues is off next week and I’ll be expected to cover and do full days (although my boss, G-d bless her, is going to intervene and request that I do not have to cover for anyone), and I want to scream. I broke down in tears at the doctor’s today because I was so fed up. He just gave me a sheet on CFS/ME, even though I’ve read resource after resource after resource and noted how many of the symptoms tally up with mine, and put me on Amytriptyline to see if it’ll work. G-d damn it, I tried my damnedest to explain what the hell was wrong and why I was in the surgery and that things were worse than ever, but somehow it must have come out wrong. What do I need to do? Draw some cute little pictures? Get an advocate in?

I originally intended this blog to be about Aspergers, but let’s face it, all the things wrong with me are blending into one not-so-glorious whole these days. They are demons, feeding off each other, and since I can’t slay them, the next thing I can do is, to quote Catatonia, clothe them and feed them, and hope they’ll keep the noise down when they’re having one of their house parties. In other words, I manage my Aspergers, my depression and my ME the best I can, but sometimes it gets too much.

When people say fuckwitted things, even if they’re genuinely meaning well, I have to bite my tongue before I say something we’ll all regret. I know they’re not being cruel, but it drives me mad constantly having to justify and justify and justify, like the time when some chuggers came to my house in the afternoon and asked me why I was wearing a dressing gown, and I had to explain that I had a chronic illness and was resting, and of course they had no clue.

Maybe in future I should write down a list of points to discuss at the doctor’s. I’ve done it before. It can only help so much.

I’m off to have a bath in a bit (so much for me being ‘unwashed’, ha ha). The next few days, where I swap from Citalopram to Amytriptyline, are going to be…difficult. I pray that G-d gives me the strength to get through it, because I really need all the help I can get.

Arguing on the internet is never a good idea

For the past year or so, I’ve been posting in a Facebook group that monitors the activities of a certain right-wing group. Members of said right-wing group would come on the group to troll us and post the same tired misconceptions: that we hate Britain; that we are apologists for rape, paedophilia, Islamic fundamentalism etc.; that Jewish members are modern-day kapos; that we do not wash, live in our mothers’ basements and never, ever leave the house; that we are anti-Semites and Nazis, which is kind of ironic, really. Sometimes, there would be neo-Nazis and Holocaust deniers, and then it got ugly. Many times, I found myself extremely upset at some of the comments posted. I remember being quite badly triggered by some comments posted about Jews who oppose the group in question, and had to be calmed down.

I met up with friends for food a few days ago, and I got talking about the apologism for Ratko Mladic and Anders Breivik that I’d seen from some members, and one of my friends asked me why I still post there when it’s clearly upsetting me, and why I bother trying to engage with these people.

And you know what? She’s right.

Arguing on the internet has never worked out well for me. Oh, sure, sometimes making fun of idiots is fun, but in the long term, you just get angry and frustrated that some people are so ridiculously ignorant. This is nothing new. Way back in 2005, I co-moderated the political forum on the old Hole site, Kittyradio, and was constantly arguing with trolls who didn’t like the band at all and were just there to convert the liberals or something. It came to a head when American users were telling British users we deserved the 7/7 attacks for ‘letting jihadis into Britain’. I left and never came back. I’d had enough.

Some people love arguing. I don’t. It’s not a case of being a coward so much as not seeing the point. When I change opinions, I change them of my own accord; being shouted at and insulted is not going to make me go, “Why yes, I am wrong.” I do wonder if my hatred of confrontation is something to do with the fact that my mother and father rarely argued, if ever, and on the occasions they did, it never got nasty. Unlike my stepfather, my dad never made my mum cry. When my mother remarried, she and my stepfather could get quite heated, and it upset me a lot, because it was something I wasn’t used to. If I was in the room when they were arguing, I’d go up to my room and hide and wait until it was over. At least it never got violent, but hearing raised voices when you’re trying to sleep and someone storming out to sleep in the spare room is pretty disconcerting when, as a kid, your biological parents never did that.

The main problem is that when someone insults me, calls me unwashed or a kapo traitor or a fat ugly Jew or disgusting, or says my mother is a disease-ridden whore, I take it personally and literally. I know I am not dirty or unwashed. I am very conscious about cleanliness, I regularly change my bedsheets and do my laundry and try not to fall into the trap of wearing the same stuff all the time, I shower and bathe and brush my teeth. I will not run away screaming if you throw soap at me, although I would be somewhat pissed off if it smacked me in the head. I know my mother is not a disease-ridden whore and that she has not been having it off with some bored troll on Facebook who’s never met her anyway, any more that my cousin Alfie is a gorilla who rides around on a tiny pink tricycle. With a horn that plays La Cucaracha.

I have to remember that the person who is calling me these names does not see me, know me or care about me. They just see my beliefs or my membership of the group, and make assumptions. I am not really a person to them; I am just some words on a screen with a goofy picture attached. I am a concept. When they refer to women or Jews or queers or disabled people, they think of those groups as a homogenous mass rather than a group of individuals, the same way that some Americans see Europe as one big homogenous landmass rather than a continent made up of different countries, with different politics and religions and laws and cultures. It’s easier to hate the enemy when they are a nameless, faceless, shapeless crowd with no names and no histories. It’s easier to dehumanise the enemy when the enemy has a vague identity and becomes a mass, a ball of Play-Doh, a walking Portguese man o’war, a sentient jigsaw puzzle.

They do not see someone who plays the piano or sings in a choir or watches stupid videos of animals on Youtube or goes to rock clubs and gigs or reads Discworld or whatever. They just see the group, and a piece that has broken off the main part of the puzzle, without looking at the picture on the piece.

And I can’t be bothered with them anymore. I will not change their minds and they will not change mine. They will not listen to opposing opinions or account for their behaviour, blaming it on infiltrators. They are not worth my time or my energy. I could be putting it to better uses, like practising the solo from Kevin Carter or arranging a new referral (and I will remember this time, dammit!)

That day, I sat on the steps in Piccadilly Gardens with my friends, and then we went to Wetherspoons and ate curry and talked about whether George Clooney and Bryan Adams were an item, Tori Amos’ increasing nuttiness, and Whoopi Goldberg’s lack of hair. I left feeling happy that I’d got out and spent time with people, as being ill, I don’t go out as much as I would like. And it was all entirely more fulfilling than arguing with idiots and getting upset over it.