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.

It’s ME again, in-sig-nificant ME again

Apologies for having been so crap with this blog lately. I really should post more, but I’ve been failing in the inspiration department. This entry isn’t going to be about Aspergers or mental illness, however – as I am writing this, it is the end of ME Awareness Week, as a part of ME Awareness Month.

I have ME. Or maybe it’s Chronic Fatigue Syndrome. Some would argue there are differences and it’s a question of semantics. I also have Postviral Syndrome, or Postviral Malaise, depending on who you talk to, since the madness began after I came down with suspected swine flu in the summer of 2009, and when I returned to work after a month off, something was clearly not right. I was more tired than usual – I nearly fell asleep under my desk – and had no energy, and I kept having to go home because I could not last a full day. Eventually, my bosses agreed to cut down my hours as I was still well enough to work part-time, and I have been part-time ever since. I had numerous blood tests and neurological tests, and after six months with no sign of letting up, I got an informal diagnosis of CFS/ME. It has now been two years, and it hasn’t gone away. Whatever name you call it, it is a horrible thing to have. I know I’m one of the lucky ones – I still have a job, I can look after myself (although housework doesn’t always get done), I can cook, I can do a bit of exercise, I can wash my hair without being in too much pain, I can carry shopping from Sainsbury’s, I can sit through a synagogue service. But I’d be deluded if I said it hadn’t significantly affected my ability to do things.

I knew what ME was way before I got sick, and I wrote an article about it detailing the experiences of my friend Chloe, who I’d met through a Space website and who had ME. She was more severe than I am; although she’s better now and is at university, back then she had to use a wheelchair, she couldn’t go to school, had to take regular rest breaks and was exhausted for days after going to a Space gig where we met the band. At one point, she could not even talk to me on the phone because the Liverpool health authorities, in their infinite wisdom, had given her some exercises to do which only made her worse. She was involved with the Association of Youth with ME (AYME) and sent me some AYME stuff, so that I could get more of an idea about what the illness was like. I admit I did get angry sometimes when I wanted to go out clubbing with her, only to arrive in Liverpool and find she was too unwell to leave the house. I cringe now when I think about it. It was rotten of me and I apologise.

I found myself bailing regularly on friends when I got ill. At first, I was able to go to the Wendyhouse in Leeds and last the whole night, although I paid for it afterwards, but as time went on, the Wendyhouse got too much, and I found myself having to cancel on the night when my body just couldn’t handle it. I missed countless synagogue services and days off work, and after I went to the Latitude festival in 2010, I was ill for days. I learned to realise that I had to be careful how much I did. Even if the tiredness didn’t immediately kick in the next day, it would kick in sooner or later, and I would have to rest up and kick myself for being so bloody stupid.

ME is not just tiredness. It has been described as constant flu, or the equivalent of feeling like some bastard has pulled a plug and all your energy has drained away. Your body hurts all over, like you’ve been in the gym, even though you can’t remember the last time you went. You have trouble remembering people’s names or small details or things that you could remember before (and this has bitten me in the arse several times at work), you think you’re OK until midday rolls around and suddenly, you just want to go home and crawl into bed. You’re tired, yet you can’t sleep. Your digestive system hates you. You dread your periods because the heavy blood loss makes it harder for you to function, and your period symptoms are magnified, as is your sensitivity to light and noise, which is pretty high anyway, what with the Aspergers as well. You find yourself coming down with more colds and headaches than before. You sometimes feel as though you’re walking through treacle, or a very thick mist. Your feet feel as though your shoes are made of lead, and your arms ache and your eyes ache and sometimes you have good days, and sometimes you have days where it’s all you can do to dress yourself and drag your sorry arse to the office to do four hours’ typing, and pray that you will not have to do overtime as you know that when you do, by the time you get home, you are just about able to heat up Covent Garden soup and have a bath and maybe call your mum if you’re still capable of speaking and then sleep.

And I’m not exaggerating. This is me. This is how it feels. It is real. I am not being a hypochondriac, I am not being lazy, I am not making excuses, it is not all in my head – the feelings of tiredness I got with depression, shitty though they were, were not on the same level as how I feel now – and no, I will not fucking feel better if I go for a nice run, because sometimes even doing half an hour on the crosstrainer results in my body being racked with pain. I am applying for another referral to the PARS service in Manchester, because I do want to exercise, but at a pace and level I am comfortable with. No, it is not because I am white and middle class. So working-class and BME people never get ME, then? Of course they do. ME does not discriminate.

Yes, it is a pain in the arse to diagnose, but no, that does not give some arsehole doctor the right to joke about how people with CFS/ME are no fun to be around, suck the life and happiness out of everything they touch, and just want attention and/or are making it up anyway. Yes, I can be a miserable git about 99% of the time, but even I have my limits, and thankfully, it’s not cost me friends the way mental illness did. It helps I have friends who either have ME, have had it or have fibro or something equally horrible, and understand that sometimes Lotte needs to rest up or go off and have a lie down somewhere. My family have been fantastic about it, thank G-d.

I apologise if I come across as angry and bitter, but it is hard not to when you know you are ill, your days of lying about illness because you hated school and wanted a day off are well and truly behind you (and not just because you’re not at school anymore), and you know there are always going to be people who think they know your own body better than you do. I know my body. I am beginning to learn, even if it is the hard way, just what it can and cannot take.

On Judaism and Aspergers: Part 1

The rabbi at my synagogue is going to a conference on autism and faith at the end of the month and has asked me to answer a couple of questions regarding Judaism and Aspergers Syndrome.

The first question is: How does your Judaism help you in the everyday things you do?

I’ve got a confession to make. I wasn’t born Jewish, or at least I don’t think I was. My mum’s family, according to a friend who did some research on her family tree, were originally Jewish, but somewhere down the line it got lost, and I had started conversion before finding this out. It would have taken too long to prove, however, so I carried on with the process and finally converted in the autumn of 2008. I’d always been interested in religion, and as a kid one of my favourite books was about world religions. I met people in the Jewish Society / J-Soc at Manchester and began to look into converting.

However, I know that I will not be universally accepted as a Jew everywhere, and this bothers me. According to some Jews, I am worse than Hitler, I am diluting Judaism, my rabbi and the rabbis on my Beth Din panel are fakers and should be shot for making fake Jews, I am a fake, a liar, a fraud. I won’t be able to marry an Orthodox Jew unless I convert Orthodox, and even then I gather conversion for marriage is frowned on. So for a start, my status affects who I can marry (Levites and Kohanim are out too). However, I don’t think I’m ever going to marry. I know a Nice Jewish Girl should find a Nice Jewish Boy, settle down, have kids, but that life is not for me.

I was originally going to go Orthodox because the rigid adherence to rituals would have provided me with a totally stable routine, and it goes without saying that Lotte need routine or Lotte go crazy. However, because I am bisexual, I cut myself, I’m a female musician and there are certain laws I feel uncomfortable with, I went Reform in the end. I needed some freedom, and I felt I’d be too constricted by living an Orthodox lifestyle. It wasn’t me. Because I have such a thing about being left out, I had to get over, and still am getting over, the fear that I am doing something wrong in the eyes of G-d and that I will be punished. I don’t know if there really is a Jewish Hell, but I fear I’ll be going there for my ‘heresy’. Even though most of the people I’ve encountered who say horrible things about my religion – and by the way, anyone who flames me over it on here is getting deleted and blocked – are online, I take things literally and thus personally. When they say ‘Reform Jews are evil and are doing Hitler’s work’, they are, to me, saying ‘Lotte is evil and is doing Hitler’s work’. I’ll explain about this in more detail another time.

It’s not fair to say my life is exactly the same as it used to be, because it’s not. I changed my diet. I won’t allow any meat in my house, due to only having one sink and one fridge (and I won’t eat it anyway), and use paper plates for Passover (and oh, how I dread having to clean the house and check for stray breadcrumbs everywhere). I do candles when I can remember, although usually I make Kiddush at synagogue, and then I’ll go out for a meal with my friends. Because of my ME, I don’t always make synagogue on Saturday mornings (which is kind of unfortunate as I sing in the choir there), but I try to go on Friday nights. I don’t pray every night, and my Shabbos observance is pretty lame, but I do make sure I don’t do housework. When I was a student, I didn’t do any coursework. I don’t sort out any bills or go to work. I need to make it different from the rest of the week somehow. I always make sure I go to synagogue when it’s a festival, although I can’t fast on Yom Kippur as it will make me ill. The one festival I can’t stand is Purim, because it sends me into total sensory overload, but that’s for the next question.

The biggest problem is Christmas, as it’s my mum’s birthday and I would feel like a total bitch if I didn’t go to her house, plus I love my family to death and as my brother is in London and one of my cousins is in Belgium, it’s always good to catch up, and I like making people happy by giving them things I know they’ll like. I was such a bad daughter and sister that I feel I have to make it up to Mum and my brother for my horrible behaviour. When the Chanukah clash comes, you’ll find me lighting candles and trying to remember the words to Maoz Tzur. Luckily, my family aren’t religious at all and Mum always took priority over Jesus in our house, so it’s primarily about family. At the risk of upsetting people, my family always come first. Without them, I’d be dead. I’m not kidding.

On that subject, I was going through a sort of prep period when my gran died in 2005, and my belief in G-d helped me get through, although it didn’t stop me taking an overdose a couple of months later. I finally took the plunge, contacted a rabbi and started going to synagogue in August that year, and on the way I met loads of new people, some of whom became my friends, others of whom became my enemies. I don’t feel a part of the community, but there’s a small sub-community of converts that I do belong to – we’re all misfits in our own ways, there’s a few of us on the autistic spectrum, and we’re all going on the same journey, so we have to stick together. Although I wasn’t looking for an identity – I had other identities, queer, female, Aspergic, feminist, British etc. – gaining this new identity made me see myself in a different light. I was part of a group of people who’d survived everything that had been thrown at them over thousands of years, and in a strange way I felt like somehow, I’d come home.

Eyes! Hair! Mouth! Figure!

I am somewhere in my pre-teens, and my mother is dragging me round various clothes shops, picking things out for me and making me try them on, picking some things out for herself while she’s at it, and I am desperate to go home, or to a book shop, or anywhere that does not involve me having to try on clothes. I try on a pair of shoes in a shoe shop, and say I like them just so I can get the hell out. The shop is hot and the lights are too bright and I am bored rigid. The shoes are tight and killing my feet. I hate this place. I hate it. I hate it.

“Why can’t you take more of an interest in how you look?”

When I do venture out into a clothes shop, I go in having a vague idea of what I want, I browse for a bit, pick a couple of items, try them on, and buy them if I like them. Get in, get stuff, get out. The idea of spending hours and hours looking at things you’ll never buy and trying them on, even though they’ll go back on the rail, baffles me. I’ve gone shopping with countless friends and hung around bored out of my brain while they try things on, holding their bags and pretending to care. Take me to Foyles or Waterstones or a music shop and I’m happy. Take me to a clothes shop and I just want to get out as soon as possible. In high street shops, I feel like a grossly obese tramp. Everyone is thinner and prettier and more fashionable than me. I feel ungainly and awkward, like I’m a giant tiptoeing through a dolls’ house and trying not to smash the tiny furniture under my huge clumsy feet.

Fashion and I have never got on. I don’t think we’ve ever met. I buy clothes because they look nice on me, or because they’re comfortable, but not because they’re in. Ask me what the current clothing trend of the season is and I will shrug my shoulders, except that time when everyone was wearing long skirts, which made me happy because I love long skirts, what with my hideous legs. But I never got the point of buying things just because it’s supposedly cool to wear them at the moment, only to shove them in the back of your closet once they go out of fashion, and go out and buy tartan stuff or whatever it is that is trendy. Who cares? Why does it matter? I just don’t get it at all. This is one of the reasons why I never fitted in at school, and why I don’t fit in at work. I see clothing as something that keeps me warm and stops me getting arrested, maybe something pretty to look at – I used to read Glamour because I loved the pictures – and something I can occasionally get dressed up in for a night out. But I cannot have long conversations about it. I simply do not care.

I am always painfully aware of how out of touch and uncool and scruffy I am when I am at work, or when I was in first year, and the other women would be talking about clothes they bought and showing off their purchases, and I would be sitting there, not really caring or mustering up the enthusiasm. Bring home a vinyl record and my ears will prick up, but bring home some shoes and I will probably be the only person not squeeing, unless they are particularly bonkers. Or are Doc Martens. I love Doc Martens.

I don’t really have a look. No, I tell a lie. It’s all elasticated waistbands (damn you, IBS and meds!), lots of black, long skirts, band t-shirts, long stripey socks, hair decs, dangly earrings when I’m in the mood, and Doc Martens, of course. Sometimes I get my hair cut when it’s summer and my head is overheated – I have very thick hair – and I have piercings, and I wear the odd bit of jewellery for a night out, but I rarely buy clothes. I am ashamed to admit that a lot of my clothes are either hand-me-downs or have been bought for me. I have little energy as it is and am rarely well enough to spend ages traipsing around clothes shops looking for new things to wear.

I don’t know how much of this is Aspergers and how much of this is just a Lotte thing, but according to the By Parents For Parents site, a lot of girls with Aspergers do have problems with image, wearing the same thing all the time, not washing or using deodorant and so forth. Maybe they can’t be bothered, or maybe, as with me, it doesn’t register. I do make sure my clothes are clean and don’t smell funny, thanks to parental influence, and I brush my hair – although unfortunately my hair has other ideas and reacts to me trying to style it with “bitch, please, I do what I want” – and I wash, brush my teeth, wash my face, pluck my eyebrows, although I cannot be arsed shaving my legs. I don’t wear army trousers or band t-shirts or whatever to work, unless it’s a Sunday and the office is empty. But that is generally as far as I go.

Hanging around with other ‘alternative’ type girls, having said that, did help me develop some idea of how I wanted to look. I liked how they dressed and wanted to look like that. I knew I couldn’t be bothered paying a shitload of money for designer labels, and that I wobbled around in high heels and was better off in flat shoes, and when I saw musicians such as Cerys Matthews or Kittie in magazines, I thought they looked cool and wanted to dress like them too. It was very much a process of trial and error, and I have more of an idea of what suits me and what doesn’t. It’s probably a good thing that I don’t wear black lipstick anymore. I have one look for work, which crosses over with my look for synagogue (except I don’t wear trousers on Shabbat), and another look for clubbing or parties. But fashion? You can keep it.

From 20 to 40 to 20 again

As I’ve said before, Aspergers and mental health problems are, for me, two sides of the same coin, a beast with two heads. They feed each other. My paranoia, my anxiety, my social difficulties and everything else are amplified when I’ve forgotten to take my meds, and I think Action Palestine are putting posters on trees as a warning that they’re coming to get me, or that my colleagues are all ganging up on me. It’s a pretty awful combination. Throw ME into the mix as well and you have added brain fog and achyness and fatigue and dizziness and yada yada.

I’ve had the latter since last year and it’s not letting up. An ex-colleague suggested I get my white blood cell count checked. Been there, done that. Then again, he also claimed I had Postviral Fatigue Syndrome, which – as any other ME sufferer who’s been through the ringer will tell you – is an old name for ME. Recently, work has been pretty hellish, given that I had to work a double shift on Monday to get over two hours’ worth of case notes typed up for my boss to read. Granted, it was a big case, and it took three secretaries to type the damn things – go team! – but by the end of the day, all I wanted to do was take some painkillers, have a bath and a sandwich – I was too exhausted to wash my hair or cook – and sleep, sleep, sleep. I took yesterday off as I don’t get paid overtime – I take time off in lieu – and spent most of it recovering. I still am recovering.

I also spent a good amount of Monday’s shifts crying. Partly because of the case itself and partly because I was so scared of making a mistake or not getting everything done in time. When I have a backlog, I get stressed, and when I get stressed, I get ill, and round and round we go. Unfortunately, with the stress comes unsavoury thoughts. This is not the first time I’ve sat at my computer and thought about knocking back the bleach we keep in the toilet, or making a noose out of the pretty pink ribbon we use for briefs to Counsel, or smashing my glass and ripping myself to shreds with the pieces. But I didn’t, obviously. Partly because I wondered who would clean up the mess, and partly because I managed to keep it together and get back to work.

I wonder how much of this is due to the decrease in meds. I’m not going to lie. Part of the reason I went back down to 20mg Citalopram was because I thought, “I gained a load of weight when I upped the dose. If I cut the dose in half, maybe I’ll lose weight.” Pharmacology fail! I am still somewhere between 79 and 80 kilos and not getting thinner. It doesn’t help that I can’t exercise because I’m too tired half the time (yes, I know, exercise makes you less tired, but oddly enough that isn’t the case with me, and if anything I get that pesky delayed recovery thing where you think you’re going to be OK and then – kaboom! the fatigue kicks in) and because of any change in routine being hard to keep up. The routine in question is my diet. I am gradually trying to cut out bad foods, but old habits die hard, although at least I’m not back on the Exlax again.

I’ve been suicidal at work before. One of my colleagues hated me, and countless times I wanted to go into the toilet and off myself because I just couldn’t cope. Being constantly subjected to someone who makes it obvious she doesn’t like you can have that effect. Every time I’ve attempted suicide, the motive has remained the same: I have pissed someone off; I am a bad person; they would be better off if I died; I’m going to kill myself.

Maybe I’m being impatient, but you’d think the meds would have kicked in by now. I don’t like fucking with my body’s chemistry, but neither do I like the uncertainty of knowing what dose to take. I also don’t want to change meds, weight issues notwithstanding, because of the withdrawal I’d have to go through, and Citalopram has been the best of three. Prozac was OK, but not quite what I needed, and Sertraline turned me into a sexless droid and made me bitter about the fact that I could not give my girlfriend at the time what she wanted. Citalopram helped calm me down a bit. Obviously, it won’t kill the Aspergers, but there’s no medicine that can, and I’m not sure how I’d feel if there was one, but that’s another issue entirely. It tones down the anxiety, which is the one thing I really need.

There’s also the worrying fact that recently, I was in bed when I heard a noise that sounded like a woman screaming and saying, “Help me”. I was too exhausted to get out of bed, but I lay there worrying, what if it was real? What if someone was being tortured and killed, and I was lying there doing nothing? And the screaming just went on and on, to the point where I didn’t know it was real, or if it was me, and I lay there wishing for it to stop, or at least for some confirmation that I would know what was real. I wished it was just my imagination, but then hearing the sound of screaming in my head is not really something I want. Particularly when it’s so clear and stark you almost believe it’s real and are that close to rushing outside in the first thing you can throw on.

Hopefully it was a one-off and is nothing to do with the meds reduction. I know it wasn’t to do with work because it happened before the case came in.

Oh well. So it goes.

Thank you.

I’ve got a lot of Asperger’s and mental health-related stuff that I want to blog about, as I had a pretty nasty experience earlier today. Thanks to chocolate, rest, and the supportive words of my friends, I’m feeling a lot calmer, and it’s made me realise that I need to stay out of discussions of politics on the internet. I am beginning to recognise my triggers, but sometimes it’s hard to avoid them. I’ll be talking about this in a future post, so bear with me.

On Thursday, it was the anniversary of Armistice Day. Today, it is Remembrance Sunday. Yesterday was Remembrance Shabbat, which I spent in synagogue with my fellow Jews, a poppy pinned to my dress, saying Kaddish for the members of the congregation who gave their lives in both world wars. It was a pretty emotional experience; some of the men turned up with medals and ribbons on their suit jackets, while a woman who had been on the Kindertransport read a poem about Jews in Berlin before the war began, and the fates they met. Despite what some people would like to believe, I am a patriot. I love England despite its flaws, it is my home, and I am proud to have family members who served in both world wars. One of these family members was my maternal grandmother, Margaret Carder nee Esling, and she is the subject of my entry today.

I was recently grilling my mum on the subject of Gran and the war, and discovered that she, like many other teenagers at the time, had lied about her age in order to get into the WAAF. She was a secretary, as opposed to being on the front line, although she did do some radio / intel work in Scotland. I wasn’t too surprised; it was fairly common for people to lie about their ages (my grandad did the same thing), presumably because they wanted to do everything they could to serve their country. There are pictures of her at Mum’s house in her uniform. She was a great beauty when she was younger, and had dark wavy hair like mine. Her fiance at the time, an Australian pilot called Des, was killed in the war, and when Gran died, a picture of Des was one of the things that was placed in her coffin (I say coffin, but it was made of wicker and looked more like a giant shopping basket). She also lost several friends in air raids. She did talk about the war sometimes when we were kids, but I didn’t hear the full details until after she died.

Gran lived an amazing life. When she was a kid, she trolled her music teacher by playing a pop song called Shoeshine Boy, instead of the classical piece she was supposed to play (unfortunately, it backfired as she wasn’t allowed to have any more piano lessons), a feat which was repeated by me in my GCSE Music exam when I played a Space instrumental song on the piano, as opposed to some crappy piece on the flute. She lived in Africa, where my auntie Debby was born, and unlike many other white settlers there, did not look down on black people, but treated them as equals. This egalitarian outlook would surface later when she was running a sweet shop, and among her customers were kids from poorer areas. Gran may have been a little snobby about manners (something Mum and I have both picked up from her), but she was never snobby about social class, and never looked down on those kids.

I wasn’t kidding when I said that mental illness ran in our family. My grandad suffered from severe mental health problems and attempted suicide several times, and eventually left Gran for another woman, leaving her to bring up her four children – my mum, my two aunties and my uncle Andy (who I never met as he died when I was really little) – alone. As well as divorce and poverty – for Grandad being too ill to work meant that the family had very little money – she also shouldered the death of her third child, Robin, who died from a hole in his heart when he was a few months old.

My memories of Gran are as vivid as ever. She got on well with my other grandmother, who was a child during World War Two, and my dad. She had a collection of bells of all different shapes and sizes, and I used to enjoy ringing them all in turn. She also kept all my auntie Nicky and uncle Andy’s old books and toys, and me and my brother used to play with the toy Wombles or this weird game that involved getting balls down a tube. She was a fantastic cook, and had this recipe for stuffing which she never disclosed to anyone. (I joke that if Mum and the aunties contacted Gran at a seance and asked her for the recipe, she’d go, “I’m not telling you, neener neener.”) She had a tiny orange car with no seatbelts and a bonnet that was always flying up. The toilet in her house made strange noises and scared the shit out of me.

She could be abrasive at times, particularly when she was nearing death, and I was a little frightened of her, but she was also immensely funny and warm and eccentric, and didn’t slow down even when she was in her eighties. Mum knew something was wrong when she was taking Gran shopping, and Gran announced she wanted to go home. She had always said that the minute she gave up shopping, the end was nigh, and she was right.

She died in 2005 after suffering from strokes and bleeding on the brain. The programme for her funeral was filled with pictures of her and her children and grandchildren, and the centrepiece was a picture of Gran surrounded by the things she loved, from Radio 4 to Tom Lehrer. At the funeral, we listened to the Beatles, and Mum read a piece she’d written in which she talked about how Gran’s qualities had been passed onto her grandchildren. To me, she passed on her sense of justice – she was a prolific letter writer, as was I – although I’d say Mum missed her love of food.

My grandmother was an incredible woman, and I’m proud and grateful to have known her for those twenty-one years before she was reunited with Andy, Robin, Des, and all those she’d lost over the years. Doubtless, every other war veteran and their family has a story to tell, and this is mine.

Thank you to all those brave men and women who fought and died for us. And thank you, Margaret Carder, for being one of the strongest and most inspirational women I ever knew, and for being my gran.

They shall not grow old, as we that are left grow old
Age shall not weary them, nor the years condemn.
At the going down of the Sun and in the morning
We will remember them.
Lawrence Binyon

A cross between Alan Partridge and Eeyore

When I went to the Latitude festival with the family earlier this year, I met up with my brother and his girlfriend after Belle & Sebastian’s set, and amongst other things, he told me to go and check out a young female poet-cum-rapper he’d seen performing around London. Her name was Kate Tempest, and she was performing in the Poetry Tent. She also, it turned out, is from Brockley, the same area I lived in when I was a baby.

Kate Tempest looked pretty innucuous; she had long, curly blonde hair and was wearing jeans and a sweater, and looked more like a first-year student than a rapping poet, but then she opened her mouth, and I was hooked. She spoke of south London, of teenagers growing up on dismal grey estates where she and her friends would ‘paint rainbows’, of troubled youth, of self-destruction and getting drunk and having a fag and saying and doing regrettable things and then writing poems about said regrettable things on wine-stained paper. Watching her in action was incredible; it wasn’t a poetry reading so much as a tornado of language and sound, and I wished fervently that I could articulate myself so well when I opened my own mouth. I can write poetry, sure, but I totally fail at reading it.

One of the reasons why I blog, and why I am writing this, is because I find it immensely hard to articulate myself when I speak. Some people tell me I’m articulate, but I open my mouth and I hear this sound that’s half Alan Partridge’s daughter and half Eeyore, and I stumble over words and sound like some mouthbreathing Baldrick. I hate speaking to people I don’t know and speaking in front of big groups of people, and although I dream of doing a talk for the NAS, or being an advocate like Chris Mitchell, I worry that I’ll start speaking and utter bollocks will come out, but give me a pen or a computer and I’m fine.

So you can imagine how pissed off I was to hear that – and yes, I know this article is a couple of weeks old – Andrew Marr thinks most bloggers are, and I quote, ‘socially inadequate, pimpled, single, slightly seedy, bald, cauliflower-nosed, young men sitting in their mother’s basements and ranting’. Aside from the fact that Marr actually seemed like a decent guy and one who would surely be above such juvenile crap, I actually disagree with his statement. For one thing, it smacks of the whole ‘hurr hurr there are no girls on the internet’ argument so beloved of trolls. The feminist blogosphere say hi, Andy, as do I. Yes, I am blogging and I am a GURL.  (Also, my mum doesn’t have a basement, and I moved out of her house four years ago, so nyah nyah nyah nyah nyah. Ahem.)

Yes, the internet does attract people with rather…unique views on life. Yes, there are a lot of angry bloggers out there who spew nothing but hate and paranoia. Yes, there are bloggers who are sexist, racist, misogynist, homophobic, eliminationist, and just plain disturbing. But please don’t lump all of us in with them. For those of us who find it hard to speak, blogs help us. They are a way out, particularly when they can be used to help others – for instance, the Mutual Madness blog, where people will post their worries and queries, and Mental Nurse regulars will do their best to answer them. Mental Nurse itself has done its bit to (to paraphrase Zarathustra, the evil enabler / mod) expose all kinds of liars in the medical profession, and also gaps in psychotherapy egulation that jeopardise mental patients’ welfare. Net result: Mental Nurse has been in the papers. People are sitting up and taking notice. It all smacks of the kind of work my dad did in the early days of nuclear power in the UK, and long may they continue.

Blogs are also a great way to learn about other issues, through the eyes of the people they affect, and not all bloggers of this ilk are the kind who insist Barack Obama is some kind of magical space Muslim Communist Jew ninja pirate. I have an American online friend, for instance, who often blogs about reproductive rights, healthcare, fundamentalist Christianity and general politics in the US, and her blog makes for very educational reading at times. Certainly, she links to news, but also to sites such as Sadly, No! and PZ Myers, whose comments are as worthwhile as the articles themselves. As well as the above mentioned friend, I also read the blogs of queer people who blog about their experiences of homophobia, institutionalised or otherwise; of transfolk and genderqueers who discuss transphobia and gender identity; of people struggling with mental illnesses and physical conditions; and so on. Through the internet, I’ve found a good few people who share the same interests and values as me, and corny though it is, it’s reassuring to know I’m not alone. One of them became one of my best friends. (Hi, Chloe, if you’re reading this.) For those of us who struggle with talking to people in real life, the internet is a valuable tool.

I also find it a great form of release. Some say venting is counterproductive, but not always; I feel better when I’ve picked up the phone and ranted to my mum or a friend, but sometimes I don’t want to dump my problems on other people and force them to listen to my incessant whining. So I write them down. If it’s on a public-ish space, I may get comments, and that’s nice if I do, but the main reason is just to get it out of me. It’s certainly more healthy than picking up a razor blade and slashing my arm. It doesn’t always deter me from doing that, but sometimes it does.

In conclusion: please don’t judge all bloggers by a few idiots. Many bloggers are good people doing good work and talking about things that need to be discussed, and which the media doesn’t always touch – and many of us see our blogs as a lifeline. We can’t say it with sound, but we can say it with writing.