Effort : Reward

The news is so depressing today.  Sometimes it’s hard to work out where my life ends and the world begins, they’re so awful.  I’m not sure if that even makes sense.  I mean… actually I don’t know what I mean.  I don’t think that the world is a product of my depressed mind (which would be solipsism and/or psychosis).  But I don’t quite mean that my depression is a product of the world (although on one level it is).  I guess I mean that they complement each other in a disturbing way.  That the world is bad enough to fit my mood, and my mood is bad enough to fit the world.

A few people have said that I should focus not on the religious stuff I don’t achieve, but on how much I’m achieving compared to the effort I put in and my abilities, taking into account depression, social anxiety, possible autism or social communication disorder and so on.  To be honest, this is a Jewish idea.  The Mishnah in Pirkei Avot says that the reward is proportional to the effort and I have heard from a couple of sources that the Chazon Ish (Rabbi Avraham Yeshaya Karelitz), one of the leading Orthodox rabbis and halakhicists of the twentieth century, would stand for someone with Down Syndrome out of respect because they are serving God on their level better than other people.  However, it’s hard for me to hold on to it, because I have no realistic understanding of what I should be able to achieve and how much effort I put in.  Sometimes I feel like I’m working flat out, putting in all the effort I can, but mostly it doesn’t feel like that.  I have no objective way of knowing, I can only compare myself with other people – my peers – who are doing so much more than me, even though I don’t know how much effort they put or how much effort they can put in.

I still feel very lonely.  It’s hard to work out what that loneliness is.  If I say I want to connect with someone, that feels OK, but if I say I want (to be blunt) to have sex with someone, that feels not OK, even though both Judaism and psychiatry recognise sex as a basic human need, and even though for me the desire for sex is connected to the desire for love and intimacy (I couldn’t be promiscuous, just from my personality).  Mind you, sometimes even saying I want to be loved feels selfish and wrong.  I should just love other people without expectation of return.  I find it hard to love people.  I guess it’s the autism, and the alexithymia.  It’s hard to understand what I feel.  E. said I was an “amazing boyfriend” but that still wasn’t good enough.  I don’t know how I could ever love someone properly, or have someone love me the way I need.

I’m supposed to go to volunteer at the asylum seekers drop-in centre (I can never work out if there should be an apostrophe in that – I would think so, but the organisers don’t seem to put one in) , but I don’t feel up to it.  I just want to go back to bed.  I’m still in my pyjamas at 11am, even though I need to leave in half an hour.

The Great Clomipramine Shortage of 2018

The Great Clomipramine Shortage of 2018 is continuing.  To cut a very long and boring story short, I should be able to get a repeat prescription tomorrow, but not the 50mg tablets I want and had been prescribed initially or the 10mg tablets the doctor prescribed as a ‘here’s one I prepared earlier’ fallback, but 25mg tablets.  The pharmacy are at least saving them for me while the surgery comes up with the requisite paperwork.  But I think when I see the psychiatrist on 8 November (if the NHS ever deigns to tell me when my appointment is…) I need to talk seriously about changing meds, because these aren’t available and aren’t doing much when they are available.  No idea where we go from here though.  MAOIs?  ECT?

The other thing I need to talk to the psychiatrist about is alternative diagnoses.  I’m still going back and forth in my mind about autism and social communication disorder.  Tony Attwood writes in The Complete Guide to Asperger’s Syndrome that diagnosis is like putting together a jigsaw puzzle.  When it is 80% complete (enough diagnostic criteria are met), the jigsaw is considered completed, BUT only if the corners and edges are in place too (certain criteria have to be met, regardless of how many other criteria are met).  I have the 80% complete, but I don’t have all the corners and edges, there are some symptoms I just don’t have, or not at a high enough level, to count as autistic.  I can see the autism picture, but because I haven’t got the right pieces, no one will give me any help with it.  So maybe social communication disorder is a better bet, or going to a CBT therapist and trying to work directly with self-esteem and social anxiety.

The other thing I get from reading the book at the moment is gratitude.  I thought my childhood was not great, but it could have been so much worse.  The bullying could have been even more intense and violent, I could have been unable to defend myself in any way except violence (which would have got me in bigger trouble) and, most of all, I could have been without my “mentor friend” who guided and protected me (literally protected me – he was tall and strong and even though he was a geek, he wasn’t bullied as much as I was).  No wonder I used to get upset and maybe even anxious if he missed a day of school.  My Mum wanted to split us up, because she thought he was holding back my social development and I would make more friends in another class or school, but I suspect I would just have been even more alone if that had happened.

Speaking of mentor figures, Attwood says of romantic partners sought by people with autism, “The partner they seek is someone who understands them and provides emotional support and guidance in the social world – someone to be a ‘mother figure’ and mentor.”  I’ve realised this before about myself.  It makes me pessimistic.  I’m a weird enough person to be trying to matched up as it is, without putting pressure on women to mentor me and even mother me (even without getting into the complexity of my far-from-straightforward relationship with my actual mother).  This seems like asking too much.  I can’t imagine anyone ever consenting to marry me on those terms.  But I worry about what will happen when my parents are gone.  Complex though my current relationship with them is, they are still doing a lot of mentoring and guiding, e.g. today, when Mum came to resolve the clomipramine prescription confusion at the doctor’s surgery, when my social anxiety/autism/social communication disorder/shyness/whatever was just making me shutdown and run away.

I just got back from shiur (religious class).  It’s become quite difficult.  I really enjoy the content, but the number of people going has gone up and I feel uncomfortable with the number of people in the room, especially as some are noisy and constantly interrupting with questions and interjections (Jews don’t really do quiet listening).  I don’t really cope very well with people who like to talk for the sake of talking, or because they like the sound of their voices, doubly so if I’m trying to concentrate on someone else talking.  Plus just being around so many people is anxiety-provoking for me – Attwood says that for autistic people the difficulty of being around people, in terms of energy needed in alertness, anxiety and reasoning out the correct social interactions on the spot, increases exponentially (rather than linearly) with the number of people.  At shiur, as well as normal fears of a social faux pas, I’m worried about a religious faux pas too.  Just to make things worse, I’m juggling more balls because some people at the shiur know a bit about my mental health issues and some don’t and some have been acquaintances since childhood and some have not, so there is a lot to think about.

I’ve been thinking again about pets.  Attwood recommends them as affectionate and understandable companions for autistic children (unlike neurotypical children, who are difficult to understand).  I’ve see them recommended for people with depression too.  As a child I had a couple of goldfish, but that was it.  My family aren’t really pet people.  But now I wonder if it would help me to have a pet.  It would also let me see if I can cope with responsibility, given that I want to have children one day (although, as I say, that seems unlikely to happen).  Small mammals seem the best bet, guinea pigs or rabbits (both are social animals and should ideally be kept with at least two – I’ve done some reading on this already).  But I haven’t got the confidence to mention this to my parents (who in any case think the pet will die and leave me even more depressed), not least because I worry whether I am non-depressed enough to look after a pet, especially when I come home from work exhausted.  And then there’s the financial cost.

In other news, my contract isn’t being renewed at work, if I happen not to have finished the work by the end of my current contract (23 November).  I was told it was because of internal problems and bureaucracy, but I worry that it was secretly because I was a disappointment and they aren’t happy with my work and the mistakes I make.  It’s rather academic, as I strongly suspect I will be more or less finished by 23 November anyway.  To be honest, I think I might be self-sabotaging my job hunting.  I don’t really feel capable of working, at least not until I have dealt with my self-esteem and social anxiety issues and the autism/social communication disorder/whatever issues, plus I’m just plain exhausted from two months (with another to come) of constant alertness and anxiety to deal with social interactions and noise at work.  I need to stop for a bit and calm down and get my bearings.  I know that sounds lazy and entitled, but I feel like I’m at breaking point and I need time out – more than the three day weekends I have (which tend to be spent on chores and job applications and sometimes volunteering).  Although I was tempted by the job I saw advertised for Information and Records Manager for MI5 and MI6.  I want to be licensed to kill people who talk in the library or bring back books late.

Planet NHS, Planet Autism

On Planet NHS:

Me: 

Hi,

I was referred to the psychiatrist by my doctor some weeks ago.   In early October, I spoke on the phone to Mr …. who referred me through the … Team.  However, I have not been sent an appointment letter yet.

My mother phoned last Tuesday and was told I have an appointment for 8 November, but the person she spoke to would not tell her the time of the appointment, saying it would be written in the letter.  However, I have still not received any letter.

Please could you let me know as soon as possible when my psychiatrist appointment is, as I need to arrange time off with my employer.

Thank you and regards,

Luftmentsch

Him:

8th November with Dr …

Me:

Hi …

Thank you, but please could you let me know the time of my appointment on 8 November with Dr …

Regards,

Luftmentsch

Him:

A letter will be sent to you with all the details once booked on the system.

Me: 

Please could you let me know when this is likely to be as I need to clear the time off with my employer.

Regards,

Luftmentsch

Him:

8th November will be the day.

Me:

[Stunned silence.]

This is why I get so annoyed at the idolatry of the NHS that goes on.  If, as someone said, the NHS is the religion of the British people, then I’m definitely agnostic.

Meanwhile, back in the real world:

Work was OK today, or at least not unbearably awful.  It was hard, but I felt a bit more together and I got by without any coffee at work (although I had one at home at breakfast and a couple of cups of tea) and without crying.  I did shake slightly when talking to my boss, and when drinking tea (both of which were completely due to psyching myself out by realising how bad it would be to start shaking).  My boss goes on honeymoon on Tuesday and will be away until after my contract is due to finish and her boss finished working there today, so my boss from next week will be someone I know slightly, but not well.  Change makes me anxious (another autistic trait).

A previous psychiatrist, the one who felt I was somewhere on the autistic spectrum (but didn’t give me a proper assessment or diagnosis) once told me that “You can’t understand people, so stop trying.”  It’s possible that my whole life has been trying to understand people, like the robot Commander Data in Star Trek: The Next Generation.  At any rate it explains why I ended up on the humanities/social sciences side, unlike many autistic people, despite being good at science at school.

Other autism-related thoughts today: I mentioned yesterday having a few geeky but non-autistic friends at school.  One very much fitted Tony Attwood’s idea of a non-autistic mentor friend who helps with socialisation.  We were friends from age five and are still occasionally in touch, although we haven’t seen each other in person in some years.  We were best friends until we were about fourteen, when we drifted apart a bit.  I remember being upset when we were told to write a passage about our best friend in Hebrew class and he read his out and it was about someone other than me.  It would be an exaggeration to say that that was a key moment in my life, but it probably was another step down a very long road.  As Attwood suggests, once the mentor friend is gone (in my case this really happened when I went to university and he, although going to the same university, went on a gap year first), social integration becomes much harder, particularly as in my case it coincided with living away from home for the first time.

I realised today that I had such limited social interactions in my first job, that it was no wonder that I found it so much easier than my current and immediately previous one.  I rarely had to deal with more than one or two people at a time, my boss was understanding, I rarely saw other staff members, library users were mature adults and the library was quiet (perhaps too quiet as I could get lonely sitting in the basement all afternoon).  Plus I did three days a week of three hours each, very different to my hours in my other jobs which are much closer to full-time.  Even so, I sometimes went off to cry in the toilet or didn’t get to work because I had a panic attack on the way.  This, I think, disguised my autistic socialisation problems and made me think I had workarounds until I got to my previous job, especially as university was also a somewhat protected environment.  It was only in my previous job, when my socialisation problems became more apparent, when I started thinking seriously about being misdiagnosed when told that I was not autistic, and thinking that the misdiagnosis could matter rather than being an abstract problem.  In particular, it became obvious that I have problems with certain types or levels of noise and with interpersonal interactions beyond simple shyness and that I’m not great with vague or implicit instructions or dealing with grey areas.

I also think my sensory sensitivity has been greater than I realised previously.  As a child, I found wool uncomfortable.  I often find wearing my watch uncomfortable (sometimes at work I take it off and put it in my pocket) and I’ve gone through periods of thinking that way about shoes.  I think mostly I’ve just soldiered on until I get inured to these feelings, although I still avoid wearing wool against my skin.

Emotional Pain

I cried at work again.  I’m in constant emotional pain, at least at work, but I can’t describe it to people, so I don’t get taken seriously.  (EDIT: not “taken seriously” is a bit harsh.  But I can’t tell even my parents how I feel, how I spend my whole time at work struggling just to keep my head above the water, let alone actually do my work.  See the quote below about autistic people being in a constant state of alertness and anxiety.)  Things aren’t so bad at home, but work is unbearable.  I feel trapped in my life.  At times I really don’t want to live, but I won’t commit suicide either, so I’m stalemated.  One of the Renaissance writers, someone like Sir Thomas More, said that the worst test God can give a person is to make him think that God wants him to kill himself.  I don’t think God wants me to kill myself, but I don’t know what he does want me to do.

I don’t want to think of myself as a victim, but the alternative seems to be thinking of myself as a failure, because I seem to fail at everything I try.

I wanted to go to a shiur (religious) class tonight, but I feel too exhausted, even a little faint (even after dinner), which might possibly be psychosomatic from the depression or, more likely, social anxiety.  I should fight it, but I don’t think now is the time.  I’m too tired and depressed at the moment and I worry that if I stay out late tonight, work tomorrow will be impossible.  The shiur was on sadness in Jewish thought, which might have been helpful, but might have been problematic, as ‘sadness’ isn’t the same as ‘depression’ and I could have ended up guilt-tripping myself into feeling that I am a bad person for being depressed, or for being depressed in the ‘wrong’ way.

More autism stuff that could be written about me from The Complete Guide to Asperger’s Syndrome:

“One of the problems faced by children with Asperger’s Syndrome who use their intellect rather than intuition to succeed in some social situations is that they may be in an almost constant state of alertness and anxiety, leading to a risk of mental and physical exhaustion.” (p. 29)

“Blame [for social difficulties] is directed at oneself: ‘I am stupid’; or others: ‘It’s your fault.'” (p. 30)

“”The child, sometimes as young as seven years old, may develop a clinical depression as a result of insight into being different and perceiving him- or herself as socially defective.” (p. 35)

The book also states that autistic children can use fantasy as an escape.  I think Doctor Who and Star Trek were for me escapes into a world where intelligence, difference and even eccentricity were prized, very different to my school.  I had a couple of geeky-but-non-autistic friends at school (primary and secondary), which probably kept me sane, although even there I kept somewhat distant from some of them and I think I was a bit nervous about going to other people’s houses if I didn’t know them well.  I did fantasise a lot, though.  Strangely (or perhaps not), I think my Walter Mitty life started in my teens, when most people are moving away from fantasy.  My friends were getting into things I had no interest in (wargaming, RPGing) and was sometimes scared by (girls, soft drugs), so I retreated into fantasy scenarios of saving the school from Daleks.  As I got older, aliens turned into terrorists and wish-fulfilment fantasies of escaping without a scratch like James Bond turned into masochistic fantasies of being hurt and on to suicidal fantasies of redemptive death, or just death.

My romantic life has largely been fantasy too, necessarily so, but problematically so.  Having such little real experience of relationships makes it harder that I ever will manage to adjust my expectations, and meet someone else’s expectations of me.

The Complete Guide to Asperger’s Syndrome also says that people with sub-diagnostic autism symptoms (which realistically is what I probably have and what I’m currently diagnosed with) can benefit from the same help that people with a diagnosis get, which is good, if I can find a way of getting help.  It’s also interesting that my sister and my Dad have some sub-diagnostic symptoms, which again is supposed to be common in families of people on the spectrum.  Although no one is going to mistake someone who likes small talk and hates silence as much as my Dad for someone on the autistic spectrum.  I guess that’s another reason why I want a diagnosis.  Growing  up my parents told me that they were shy as children and I should just ‘push myself’ to talk to other people and that it would get easier with practise.  It never did, and I suppose if I was diagnosed as being on the spectrum, that would be a kind of justification for failing to master small talk and social skills.  Maybe that’s not a good thing, maybe it will just encourage me to isolate myself.  I don’t know.  I don’t really know about a lot of things right now.

Failure to Thrive

I did not sleep well last night, waking up in the middle of the night with a headache, not being able to get back sleep, getting up and doing some things before suddenly dozing off when I finally thought I would get dressed and start the day.  My uncle and my sister came over for lunch (my brother-in-law is unwell) and we ate together.  Surprisingly, it was warm enough to eat in the garden.  The resultant mental hangover may have contributed to low mood in the afternoon.  At any rate, I was over-analysing things, wondering if I was contributing enough to the conversation, if I was over-sensitive to the sunlight and judging everything through the prisms of autism and social communication disorder.  The conversation got onto the topic of the new series of Doctor Who at some point, and the older generation opined that it was “too politically correct.”  I don’t particularly agree (although I agreed about the lack of Jews in general and frum (religious) Jews in particular in Western culture), but as usual with dissent I withdrew from the conversation rather than state an opposing view, from fear of being attacked or rejected.  This is not particularly healthy.

After lunch (which went on until after 4pm), I went for a walk.  I was feeling very miserable (perhaps from socialising, perhaps from eating too much ice cream, getting  a sugar rush and then crashing), feeling that the world does not have anything to offer me and that I would really like to die (while I was thinking this, Beethoven’s Ode to Joy came on my iPod…).  Then I ran into one of our neighbours with his young children (aged I guess about eighteen months and three or four years) and they were very curious and wanted to talk to me, so I played with them for a few minutes and I did feel somewhat better after that.  Maybe my Mum is right that I should be looking for a job working with young children, I just don’t feel confident to look after other people’s children, let alone teaching them.  On which note, the asylum seekers drop-in group I volunteer at is taking place on Sunday.  I was thinking of skipping this time, because I need to apply for jobs and because I’ve hardly done any cooking in weeks because of Yom Tov and various other things, but I’ve agreed to go now.

After returning home I spent a while working on a job application at a very prestigious public body.  I very much doubt that I have the experience and skills needed to get the job, or even to be called for interview, but I’m trying to fill out the application.  I have quite a bit still to do, but I’ve run out of time tonight, although it has been hard to stay focused on working on the task when the thought of getting the job, or even being called for interview, while appealing on some levels, is also terrifying.  Family lunch plus walk plus application plus (I admit) procrastination means little time for Torah study, which I feel bad about, and possibly a later night than I would like before work, as I ‘timeshifted’ watching tonight’s Doctor Who episode to later to concentrate on the application.

In Jewish thought God interacts with a person according to how much he or she wants Him to do so; He doesn’t force Himself on a person.  To some extent at at least a person receives overt divine intervention (as opposed to things happening apparently by ‘chance’, which is really also divine intervention of a different kind) in proportion to how much he or she wants it and is willing to let God in.  I think this is something of a simplification of a complex idea and God does not act in this way 100% of the time, but aside from the question of the difference between overt and covert intervention, it seems to me that this would act against people who can’t trust from their experiences (e.g. me).  I can understand philosophically that everything God does is for the good and even my suffering must have a purpose, but I find it hard to just trust Him; I assume His plan for me involves much more suffering and very few pleasant experiences, and that He hates me for my sins.  It is very hard to abandon myself to belief that I can recover from mental illness, find a job I can do, marry and have children and generally be happy.  It seems this is another way that the bullies of my childhood win.  Not only did they make me miserable at the time, but they have trained me to expect only the worse for myself, which becomes a self-fulfilling prophecy, whether for religious reasons or just psychological ones.  Even viewing the matter from a secular perspective, lots of cognitive psychologists would say that one’s experiences come to meet one’s thoughts and expectations, rather than the other way around.  I try to tell myself that my life could get better – and it could – but I can’t believe that it will get better or that God wants it to get better or that I deserve it to get better.

I feel I should be doing a lot better than I am with my life.  I had a whole paragraph here which I would have liked to have kept in, but which I thought was probably lashon hara (malicious speech) so I cut it.  But I feel a lack of affection and love in my life.  “Failure to thrive” was the term used when (I think this was in the 1950s) excessive hygiene fears led to parents and nurses being discouraged from holding babies for fear of passing on germs, resulting in unnecessary premature deaths, because babies need hugs and love as well as milk and warmth.  I feel a bit like that, that I’m failing to thrive in many senses of the term, particularly from lack of support, although it seems unfair to write that as I have some support and it is hard to state what exactly I want.  Certainly, despite doing so well at school, I have failed to thrive in any sense since going to university and especially since leaving it.

“Well, blimey, look at him. He ain’t normal, is he?”

The title quote is from The Underwater Menace, one of the less accomplished Doctor Who serials of the sixties.  Ripped out of context, it somehow sums up how I feel everyone else must think about me today.

On the way into work I read a few pages of The Complete Guide to Asperger’s Syndrome.  It looks like I was wrong about the diagnostic criteria for autism having changed.  They have changed, but it’s now harder to get a diagnosis rather than easier.  I’m not sure why this has been done, considering popular awareness of autism is greater than ever before and there are surely more people trying to get diagnosed.  Maybe that was the point.  Maybe they only want people with severe impairments being diagnosed.  I’m not really severely impaired directly by the autism, it’s just that I struggle to understand and communicate with people.  Which reminds me, I found this link about high functioning autism not being the same as mild autism the other day.  I think it’s very useful for understanding how I feel, especially numbers 2, 3 and 5.

On the other hand, there is a new possible diagnosis of “social communication disorder”, which takes some of the social impairments from autism without the restricted interests (and apparently also without the sensory sensitivity, although the book does not explicitly state that).  That might be a possible path for me to take, given that my social impairments are much more severe than my other symptoms, which was part of the reason why I had such a confusing “yes, but no” diagnosis in the first place.

Work today was hard as I got told to redo some work that my boss said was done wrongly.   I had made one mistake, but one other mistake I just could not see on the spreadsheet and two other “mistakes” were not mistakes at all, but judgement calls that I had made, perhaps incorrectly.  Nevertheless, my boss was asking for me to double-check a load of work I did yesterday.  It brought my mood down, though, even before everyone else on the team went out for lunch together and I couldn’t go because there are no kosher restaurants around here.

Then, after lunch, I was told that I had corrected the genuine mistake incorrectly.  Perhaps because I was annoyed about having my judgement calls questioned or perhaps out of plain absent mindedness, I had corrected some columns, but had forgotten others.  My boss was rightly annoyed, but I wasn’t sure whether she still wanted me to double-check the other work or not.  I thought I would quickly do it, except it took nearly an hour in the end and I left work at nearly 6.00pm.  I’ve come home to a pile of emails I should deal with (shiur has been cancelled this week as the assistant rabbi is away), but I just want to eat pizza and watch Doctor Who.

I feel like I can’t actually succeed at anything I do.  I was good at school work, but university put paid to any notion I had of being academically-gifted.  I might have managed a first if I hadn’t been depressed (I was two marks short of a first in my first year exams), but finished up with a low 2.1 after a three years seriously disrupted by depression.  I’m told I can write well, which I tend to doubt, but even if I do, I’m not sure how to do anything beneficial to myself or others with it.  The only things I’ve had success writing about are Doctor Who, depression and antisemitism.  I’m working on my Doctor Who non-fiction book still, but am quietly doubting whether I can write what fans want to read, either in terms of style or content.  Anyway, part of me thinks I’m wasting my time with middle-brow family television.  A couple of people have encouraged me to write a misery memoir or some similar depression-themed work, but I can’t find enough positivity to write something uplifting and any accurate account of my childhood would upset a lot of people whose private details could not be changed enough to make them unrecognisable.  As for writing about antisemitism, it is more socially worthwhile, but also very depressing and unlikely to make much of an impact and would embroil me in a lot of arguments that I would rather avoid, although the idea for a antisemitism-themed PhD thesis continues to bubble away in the background without my ever intending to leave it there.

Well, I have an appointment on the moon with Patrick Troughton and a pizza…