Sitting in the departure lounge, feeling bored and overwhelmed – overwhelmed by noise and by depression. I bought my Dad a multi-ink pen that says “I love Israel” but I still wonder why I can’t remember to buy him a present, but on seeing our flight is EZY 2084, I remember immediately that 2084 is the year the Doctor Who story Warriors of the Deep is set in. If I’m not autistic, someone has a lot of explaining to do.
My mental health group was difficult again today. There was a lot of talking, including small talk (which I struggle with) before the session and a lot of loud participation during the session, which is good, but still difficult for me when it is so loud (because of autistic sensory overload issues), especially with a lot of interrupting and going off at a tangent away from the point. I did actually say at the end that I was feeling very overloaded from all the noise and someone else complained that we aren’t getting through the material.
I knew most of the material today anyway, as it was basic CBT stuff and material about the fight or flight response. But I feel I should go as it’s free and someone else could have had the place if I don’t go – except that’s not quite true, as I only got on the course at the last minute as someone else cancelled, and the course is over-subscribed anyway, that’s part of the reason it’s so noisy. Still, I don’t like to turn things down in case they help and because it seems arrogant to say that I know everything already and because people say you aren’t trying to get better if you don’t try anything, but I am worried that I’m not going to get anything out of the rest of this class. I got a little bit out of the previous one, not a huge amount, but what I did pick up was helpful, so I’m still hoping I’ll get something out of this, but who knows? I do know a lot about depression after seventeen years, from my experience and from my reading and therapy.
Since getting home from the group, I’ve been exhausted and trying to recuperate. It didn’t help that I was up late last night working on my writing and did not have a refreshing sleep, which was probably a mistake after a day at work. I started to listen to a very long (hour and a half) online shiur (religious class) on Jewish medical ethics regarding mental illness and mitzvot (religious commandments). To be honest, this was probably not recuperating, but I didn’t want to waste the afternoon. I am very bad at giving myself time off when I need it for mental health/autism reasons which is probably self-defeating in the long run. The shiur was interesting, but I could not concentrate for all of it in one go. Also, it has not left me much clearer about what I should be doing practically; a lot of it was about extreme cases, not chronic lower level issues, while high functioning autism is another issue again and was not covered (although some of the shiur was probably relevant to severe autism).
I do feel exhausted still, from this morning and from the shiur, not helped by a difficult conversation I just had that I can’t go into here, but it’s hard when one feels misunderstood and drained by those around you. I struggle with one particular interaction. I don’t know if it’s autism or depression or just me being a Bad Person, but long-term readers of this blog will know that I often jump to “I’m a Bad Person” which is not terribly helpful. Anyway, I’m going to turn my computer off, have dinner and try to get an early night.
I started a new depression course today. It was quite good, but there were a lot of people and a lot of talking and I got quite overloaded. People were more friendly than on the previous course inasmuch as they spoke to each other before the course started and during the break instead of sitting in silence, but that of course triggers my social anxiety and also my autistic sensory overload at times. Also, people did interrupt a bit during the actual course, mostly to try to make helpful or supportive comments, but I do find that kind of interrupting distracting and I hope the facilitators will be a bit more politely firm about people respecting other people when they are speaking.
Today’s autism moment: Dad gave me a lift to the course. When the satnav said to “Keep right” for a moment I thought, “How? We drive on the left in this country!” D’oh! (Do I just notice these things more now I’m aware of them and aware there is a label for them or are they becoming more common? Logically it should be the first option, but it’s a bit weird all the same.)
I need to write about my day for my private journal, so I may as well write it here; you read about the bad days, so I guess you should see the good ones too.
I got up quite early (for a Sunday), but struggled with exhaustion. I did eventually get going. I went to volunteer at the asylum seekers drop-in centre (I still think there should be an apostrophe in that, but it’s how they spell it). I deliberately arrived over an hour late because I knew I had a busy day and I wouldn’t be able to cope with four hours plus of volunteering.
At first I felt completely out of place. Even after volunteering there for several months, I don’t feel that I know anyone well enough to say anything deeper than “Hi, how are you?” I struggled with sorting piles of clothes (I can’t always easily tell men’s from women’s or adults’ from children’s… to be fair, I’m not the only person there with this problem). When the asylum seekers arrived, I went to volunteer in the creche area as I usually do, but at first I found it difficult to connect with the children; there were other volunteers there who seemed to find it much easier to connect with them. I actually thought about coming home, but after a while there were so many children there that they really needed me to help, plus I found it easier to play with some of the younger (pre-school) children, who seemed to like me. There was one little baby there in particular who happened to share my first name who seemed to feel very comfortable with me; at one point he tried to feed me his half-eaten biscuit, which was cute and slightly gross at the same time!
I then came home and vegetated in front of Doctor Who for an hour and a half to regain some energy (not exactly relaxing, though, as I’m watching as research for my Doctor Who book) before going out to dinner with my family. It was my sister and my father’s birthdays last week and this was the celebration at the local kosher Chinese restaurant (my sister’s favourite). I was limited in my food choices as I’m vegetarian during the week (I only eat meat and fish on Shabbat (the Sabbath) and Yom Tov (Jewish festivals)) and the restaurant had limited vegetarian options. Kosher meat restaurants have limited vegetarian options as a rule and I’m not entirely sure why. I suppose not being allowed to serve cheese or milk (because of kosher laws preventing meat and dairy in the same meal) limits them, but you can still do things with tofu or soya; this restaurant had one tofu side dish only, which is frustrating. I did have vegetarian spring rolls, vegetarian dim sum, various vegetable, rice, noodle and tofu side dishes (as a family we ordered five different side dishes, all meat free, and shared them around) and hot chocolate cake and parev (non-dairy) ice cream. We had a good time, but I struggled with the noise in the restaurant, which was somewhat uncomfortable for me. It’s strange that it’s only in the last few years, since I’ve learnt about autism and sensory overload, that I’ve realised how uncomfortable I can feel in noisy places. I suppose one needs to know a concept and have a name for it before one can identify it. Before then, I probably just put uncomfortable feelings down to introversion, social anxiety or depression or just went home in a bad mood without knowing why.
I ought to go to bed now, as I have the last session of my well-being group tomorrow and I’m likely to be exhausted. I’d like to do some work on one or more of the three books I am writing/would like to write if I have the energy. Still, today was a positive experience after a difficult start, which is good. I even got some Torah study in there at some point.
Work today was surprisingly good. It was the first day of my new job, working in a university library (I won’t say which one and will have to be careful not to give away obvious clues). I’m contracted for two days a week for a month with the possibility of extending it for another two months, but I don’t think there’s any possibility of the job being extended beyond that as I got the impression that the person I’m covering for will be back after that.
I was incredibly nervous on the way in. As often happens, I felt like a child. It’s hard to actually function as an adult when part of my brain insists that I’m five years old and shouldn’t be doing anything difficult by myself. I was – and really still am – terrified that I can’t do anything right and that I’m bound to get fired.
The morning was largely taken up with induction stuff: seeing HR, getting my security pass made, setting up IT and email accounts and so on. Stuff that is important to go through, but which isn’t the main part of my job. I didn’t realise until I was alone in the staff room at lunchtime how overwhelmed I was by being in busy parts of the university, overwhelmed by the noise and the people. I don’t know if that’s autism per se or just introversion. I know I over-analyse feelings like that to try to pinpoint if they’re autism symptoms or not, when it might be impossible to tell. All I know is that sitting by myself in a quiet room, I felt sudden relief and a desire not to leave.
Actually, I noticed today just how much information I’m trying to process when I’m in with other people, particularly when I’m with a group. I was aware of what I was being told (i.e. what I was supposed to concentrate on), but also little things like the ticking of clocks and the posters on the walls as well as my constant internal monologue, often struggling with OCD thoughts or other ‘bad’ thoughts… It’s hard to tell what is responsible for this. Obviously the OCD thoughts are OCD, but I don’t know what causes the hyper-awareness. I know autism is often seen as, in part, an inability to filter out information, resulting in overload and difficulty finding and remembering correct information, but I’m not sure whether what I was experiencing really corresponded to how I have seen sensory overload described. I don’t know whether social anxiety could also contribute to this feeling of alertness and difficulty in filtering out irrelevant information. Once again, I run up against the problem of trying to compare my subjective experiences and feelings against other peoples subjective experiences and feelings as well as with supposedly more objective clinical criteria. It’s very hard.
In the afternoon my boss showed me some of the other team members in our department. The university employs about 350 people in the library (I don’t think they’re all librarians) over a number of different sites. I’ve never worked at an institution so big. It’s probably good for my career (something has to be good for my career) that I’ve worked in a variety of libraries: a one-person library (library with only one full-time staff member) in a small college, the library of a busy further education college and now a very big library in a very big higher education college. To be honest, they all had advantages and disadvantages, but I think higher education is probably a better fit for me than further education.
I was rather overwhelmed by all the people. I’m not good at names at the best of times and obviously being introduced to a couple of dozen people in different rooms inside a labyrinthine building, trying to take in names, jobs and locations is not easy. Everyone seems nice, especially my boss, but part of my brain was just thinking that that will only make it worse when I let her down and mess everything up.
This fear of messing everything up only worsened when I was introduced to the rare books. This will be a key part of my work over the next month. I was shown the rare books store and was taught how to handle old and fragile materials. I’m terrified that I’m going to damage something unique and priceless (I would give some examples, but obviously identifying anything rare or unique will make it easier to identify the institution) or that I will simply do something stupid like forget to lock one of the rooms (or lock someone in – I nearly locked someone in the staff room). When my boss and one of the conservators showed me how to handle the materials, it was difficult to focus on handling them correctly when I was trying really hard not to shake with anxiety (and of course, trying hard not to shake is likely to trigger shaking), more from the anxiety of being watched so intently as to fear of damaging something.
Still, it was interesting to deal with rare books, something that I haven’t had the chance to do for a long time and something that did attract me to librarianship. It was also interesting to be part of a library staff so big that I didn’t have to play any client-facing role. If my depression hadn’t started again when I was doing my librarianship MA in 2010, I think I could easily have ended up in a library like this, working as a cataloguer and/or with rare books. But the depression and the consequent damage to my career, both direct (I’m not well enough to work full-time, I’m impeded by social anxiety) and indirect (my cataloguing skills have atrophied somewhat from lack of use and my MA course, although accredited by CILIP, was not one of the best in the country, thanks to the depression making it impossible to go to my first choice university) means that I’m now trying to work out what kind of career I can make for myself.
So, that was my first day in my new job. It was probably the best day I’ve had at work in a long time, so it’s frustrating that I won’t be here for very long even if I don’t mess anything up. Plus, I just did a somewhat scary thing regarding fighting my kashrut OCD, so I guess it was a good day overall even if I do now have a headache and feel exhausted.
One last thing: I didn’t mention the other day that my GP is fine with referring me for another autism assessment. I’m not sure why he wanted to speak to me about it first. So that’s also good news, although the waiting list for autism assessments means that I probably won’t be seen for nearly a year.
My main activity today was a workshop on autism and employment and higher education. This included a lot of helpful information about whether to disclose autism (and by implication mental health issues I might also want to disclose) and employers’ legal obligations towards the disabled. I was hoping for some information on coping strategies and adjustments for various problems one might experience, but I guess people with autism are too varied for a ‘one size fits all’ approach or perhaps there will be a workshop on that topic at another time.
In fact, the workshop really did bring home to me how autism affects different people very differently. I knew this in an abstract way, but it was interesting to see it in action. For instance, some people get affected by bright lights or loud noise and needed warning about a video that included these; I am usually fine with those, although sudden loud noises make me jump (I guess that’s the same for a lot of neurotypicals, though), but put me in a room with a lot of talking, even quiet talking, and pretty soon I will start spacing out as my brain tries to work out what everyone is saying (not consciously; I’m not eavesdropping ) and gets overloaded. Similarly, even bright or flashing lights during the day are fine for me, but when I’m trying to sleep, even dim light or a little light under the crack in the door, will keep me awake. Similarly, with communication, I did not feel confident saying much at all, and some other people looked similarly socially anxious and reluctant to join in, whereas other people were chatty or even a little disruptive by not know when to stop talking.
Part of my brain was trying to work out how I fitted in with this diverse group of people: was I ‘more’ or ‘less’ affected? It’s not really a helpful perspective. My therapist said that I tend to see mental illness as a competitive sport and part of me wants to be the ‘most depressed’ person or the person with the most diagnoses. This, I would guess, stems partly from self-pity and partly to try to explain (to myself as much as to others) how badly my life has seemed to have gone wrong over the last fifteen years and to make excuses for myself or at least to provide mitigating circumstances. But it was impossible really to create such a hierarchy at the autism workshop; even on the very superficial level at which one can get to know people in a two hour workshop, we all seemed incommensurable, each too different to compare to anyone else.
Related to this, I have been finding it hard over the last few days to work out how to conceptualise myself. I think one problem of our society (by which I mean Western society rather than Jewish society for once) is a tendency to think in terms of oppressor/victim binary pairs (the Leninist “Who? Whom?” – who is oppressing whom?), whereas in reality (a) things are not usually so clear cut and (b) even if one is a victim, it is not particularly helpful to think of oneself as a victim. It leads to learned helplessness and low self-esteem. Take it from someone who has ended up there. But how to think of myself in a more positive light is hard. Judaism as a culture/religion is less focused on victimhood, despite the fact that for many centuries Jews were (are) victimised. Unfortunately, Jewish religious identity would focus on fulfilling the Torah,or at least fulfilling one’s potential, and being loved by God, which is problematic for me as I feel that I do not meet my religious obligations or even my potential and that consequently God does not love me. I hope that CBT will help me frame things in a more helpful way.
It’s hard to do this with so few role models. I don’t really expect there to be loads of books or TV programmes about autistic-depressive-socially-anxious-Orthodox-Jews, but there isn’t really much I’ve come across remotely like me. I’m currently reading the novel Turtles All the Way Down, which is a reasonable portrayal of OCD. However, in terms of portrayal of autism, The Imitation Game made me feel lonely and useless and that was a reasonably positive portrayal; I absolutely hated The Curious Incident of the Dog in the Night-Time which I felt failed to engage with people with autism at all sympathetically.
As for Jews… well, there are lots of Jews out there in fiction, but ninety-nine times out of a hundred they’re ultra-assimilated, there to provide a dash of ‘diversity’ without the author actually having to do any research. In terms of detailed, positive portrayals of religious Jews, there’s Chaim Potok and that’s about it. I haven’t read/seen Disobedience because the story wasn’t my type of thing and I worried it was going to be critical of Orthodox Judaism. Don’t even mention The Yiddish Policeman’s Union, which started promisingly, but ended up by supporting every crazy antisemitic conspiracy theory going (author Michael Chabon has since distinguished himself as a rabid critic of Jews, Judaism, the Jewish State, and pretty much everything Jews do other than assimilating themselves out of existence).
So I’m left to turn back to nineteenth century Yiddish literature which is (a) hard to get hold of in translation and (b) often targeting Orthodoxy satirically as much as positively and even when it’s not, I find it hard to see myself as peasant or even a rabbi back in the shtetl (Jewish towns of Eastern Europe). I did watch a bit of webcast comedy series Soon By You but the relationship-driven plots just made me feel more alone and upset that I don’t live in the USA where I would have a statistically greater chance of meeting someone like myself. I haven’t seen Israeli drama Srugim, but I imagine that would inspire similar feelings, only replacing the USA with Israel.
Most of my heroes growing up were outsiders in other ways (aliens, robots and time-travellers) and were role models only via metaphorical interpretation. More recently, watching Sherlock again I expected to empathise with Sherlock Holmes, but while the nineteenth century original was possibly autistic and probably bipolar, the modern-day TV version is, by his own admission, a “high-functioning sociopath” and almost sadistically rude. I find myself more drawn to the minor character of Molly Hooper, a pathologist with apparently low self-esteem and an unrequited crush on Sherlock. To be honest, if she was real, I’d want to date her (if she was Jewish), but I fear I wouldn’t measure up to Sherlock, even if he does manipulate her and generally treat her appallingly.
The sad truth is that, here in the real world, 99% of the time people with autism, depression, anxiety or OCD don’t actually have compensatory superpowers.
(As an aside, there’s an amusing poem by Philip Larkin called A Study of Reading Habits in which he reviews the literary heroes and anti-heroes of his childhood and adolescence, notes that these days he identifies more with the cowards and failures than the heroes and finally advises the reader to “Get stewed:/Books are a load of crap.” Thus spake the Librarian of Hull University.)
I think I’ve mentioned this before, but Israeli statesman Shimon Peres was asked if he saw a light at the end of the tunnel regarding the Israeli-Palestinian conflict; he replied, “There is a light, the problem is there’s no tunnel” which I took to mean that the outlines of a peace deal are obvious to most people (other than fanatics on both sides); the problem is working out how to get there.
Similarly, I know what my ideal life would look like: mental health issues under control (I’ve given up on comprehensively escaping them and want just to manage them); a job I can do, which pays the bills and which stimulates me intellectually; the time/energy/mental health to meet my religious obligations (prayer, Torah study etc.); a wife and children; a certain amount of free time; a few friends; and a community I feel comfortable in. This seems a lot (although most people seem to manage with most of these things) and I have absolutely no idea how to achieve these goals. I don’t think I have a realistic image in my head of what they could look like in the real world. I’m not even sure that I have a clear fantasy image of my dream job, let alone a realistic one and while I do have a fantasy image of being loved by someone, I’m not sure I really have the experience to know what a real relationship is like. I don’t know how it is that some people can plan out their lives and then systematically achieve their goals; it seems quite beyond me.
The frum (pious) thing to say is that I trust that HaShem (God) will provide for me, but I don’t. I fear that He hates me because of all my sins; worse, I worry that His plan for me involves only suffering, which is worse than punishment, because punishment can be mitigated by repentance, whereas if He simply plans for me to suffer for some reason that is beyond my comprehension, then there simply isn’t anything I can do about it. I don’t know what to do about this or even how to raise the issue with other frum people e.g. my rabbi mentor.
Nietzsche described depression as having “fierce dogs in the cellar.” I feel like I have a whole pack of fierce dogs in my cellar: depression, anxiety, OCD, and they’re all baying for my blood at the moment. Even the OCD, which I thought I’d got rid of, has come back.
I went to bed late last night (about 1.30am) because I was writing a job application and (I admit) blogging, but I woke up at 6.30am with a headache that wouldn’t shift. I watched TV for a bit until the headache went, but trying to go back to sleep after that didn’t work; I just lay in bed feeling depressed and having OCD thoughts: I made a kashrut (Jewish dietary law) mistake recently and am waiting to hear back whether I need to do anything practical about it. I guess it’s a big improvement on how I was two years ago, as then I would be in a total panic, thinking I had treifed up the entire house (made all the crockery etc. non-kosher), whereas now I think there’s probably nothing practical to do, except feeling stupid for making a mistake. I wish I could accept mistakes as part of life rather than beating myself up endlessly for them. I try not to get angry with other people for their mistakes, but, as I’ve noted before, I treat myself much worse than I treat other people and worry that if I forgive myself for anything I’ll just become complacent and end up as a terrible person.
I tell myself that I don’t care how many people read my blog and to some extent that’s true. I’m not generally agonising over follower numbers or likes the way I used to. Still, once I get followers (and I’ve acquired a few recently), I worry about losing them. It doesn’t help that I don’t really understand why anyone would read my blog. I worry about being “too much” for people. Too Jewish, too geeky, too mentally ill. I look back at some posts (e.g. yesterday’s) and shudder at how much I give rein to what I feel without thinking what other people will think of me. I don’t have much confidence in my writing ability, especially here, where I give freer rein to my thoughts than in more ‘formal’ writing situations. I suppose I don’t have confidence in my self as someone other people would want to know, through my blog or in real life. I guess it’s the classic Jewish thing of not wanting (as Groucho Marx said) to belong to any club that will accept me as a member, a mindset that dogs pretty much all my social interactions. As with most of my issues, it stems from low self-esteem and a childhood of being bullied and ostracised, but I don’t know how to move on from it. I’m hoping if I can get some CBT soon it might help, but I’m worried it won’t.
Part of my trouble in finding a correct diagnosis is my the difficulty I have in describing what I feel and in understanding how other people experience the world, what is ‘normal.’ This can be particularly true with my religious life, given that religious Jews are rarely portrayed in fiction and are usually presented negatively when they are. For example, it occurred to me a while back that I have always felt uncomfortable with my tefillin on. I just thought that this was one of those things, perhaps even a bad reflection on me that I felt uncomfortable performing a mitzvah (commandment). But now I wonder if it is autistic sensory sensitivity. Or it could be something that everyone who puts on tefillin feels, but no one talks about it because it’s too mundane and taken for granted. I think my father finds his tefillin uncomfortable, but he binds his far too tightly. I’ve never had the courage to ask anyone else. Likewise, when my OCD was bad, it was a relief to discover I’m not the only frum (religious) Jew who struggles with seeing images of Jesus and Buddha while davening (praying) thanks to OCD.
My instinct is to say that I’m a loner, but I’m not sure that it’s true. I dislike crowds, but I think I need a few good friends. But I’ve spent much of my life feeling very lonely. According to Julianne Holt-Lunstad, a professor of psychology, loneliness, from a health/mortality perspective, is “comparable to the risk of smoking up to 15 cigarettes a day… It exceeds the risk of alcohol consumption, it exceeds the risk of physical inactivity, obesity, and it exceeds the risk of air pollution.” Whoops. One article I saw suggested that people who don’t fit into their community should move to another one, but that isn’t always possible. Certainly in my case, my choice of community, although wide by the standards of where I used to live, does not provide any community that would be a perfect fit for me. My shul (synagogue) has positives and negatives and I have to learn to live with that. I can’t find a “shul for weirdos” as that author of that article was able to do.
I sent off a job application. I just feel anxiety and despair about the whole job hunt process. I want to have a job and be financially independent, something I haven’t managed in thirty-five years (I’ve never worked full-time and even when working I’ve still had my income supplemented by my parents because I have never earned enough to be fully self-sufficient), but my experience of my current and previous jobs are too negative: too many mistakes, some of them stemming from social anxiety, but many through sheer carelessness. I hope that’s due to depression (at any rate in the past I was not a careless person), but I worry that I’ve become a careless person and ultimately whether the carelessness is due to depression or not doesn’t really make a difference to the fact that I don’t feel capable of doing a job well. In the job before that I made fewer careless mistakes (or maybe they just weren’t found as I wasn’t being supervised so carefully), but was frequently absent due to depression and anxiety, which is not encouraging either.
Looking to complete a second application this weekend, I found myself having to choose between a job I was not really qualified for; a job I probably was qualified for, but for which the employer wanted a recent graduate straight out of library school; a job that had all the negative aspects of the revised job description I turned down at my previous job because I didn’t think I could cope with it, but only on a three month contract (the job seems far too complicated and involved to be done in just three months); another job I’m technically over-qualified for, but which I suspect would still push me to my limits, given how I feel right now; and one I’m applying for out of desperation because it doesn’t seem as obviously a bad a fit as the others. Actually, on second thoughts, it also looks worryingly similar to the job they were turning my old job into and which I (and my then boss) didn’t think I could do. I worry – again – that the librarianship profession has changed. I could have been a great academic librarian… fifty years ago, before the internet, when librarianship was about managing a collection of hard copy books and knowing how to search card catalogues and reference works to answer reader queries. But now academic librarianship is about teaching information literacy, managing online resources and marketing library services to staff and students. But I’ve started the application now and will finish it.
I did procrastinate a lot over the application. I hate the fact that I essentially have two jobs at the moment: my part-time (four days a week) paid job and my unpaid job on non-work days (bar Shabbat (the Sabbath)), applying for a new job. I don’t have time to tackle various chores that need doing, let alone relax, yet because of my mental health situation, I need time to relax a lot. So I end up procrastinating and neither applying for jobs or truly relaxing.
Someone at work, interviewing applicants for a position, remarked that there’s a clear difference between candidates who want a job and candidates who want the job. I fear I’m in the former category. I don’t actually know what job I could do well and at the moment have very little confidence that I could do anything. At the moment I don’t really have any ambition. At times it feels that the only thing I want is… perhaps not to die exactly, but not to be here. To be on another plane of existence. Not to deal with the heartache and the thousand shocks that flesh is heir to, and which I seem to be singularly bad at dealing with. I vaguely want to have a career, friends, community, marriage, children, but I have no real plan of how to get any of these things and I doubt I would know what to do with them if I did get them. I don’t see myself as really competent to work (although officially I’m fit to work and don’t qualify for benefits) and I can’t imagine anyone wanting to marry me, unless it was someone who was ‘settling’ because she was desperate for children.
Walking to the shops, I visualise myself watching my own funeral in ghostly sort of way. This is a morbid fantasy I have when I’m very depressed, or even mildly depressed. I worry whether there will be anyone there, or whether I will be so alone that I won’t get a minyan (prayer quorum). I worry what the eulogies will say, because I can’t think of very much that is positive that one could say about me.
I fear this blog is getting tiresome. The same topics – my ambiguous relationship with autism, my anxieties about work, my loneliness and fear of being single forever, my belief that I am a reprehensible person, my struggles to fit into the community I have chosen for myself – seem to dominate week after week. It bores me, let alone my readers, but I am not sure what I can do about this. It all stems from my poor mental health and consequent lack of direction. Actually, even my mental health may not be the primary issue; it increasingly seems to me that my low self-esteem and lack of self-knowledge is at the root of the depression, rather than the other way around. I don’t know who I am, and I don’t like what I do know. I can’t take my friends or family seriously, because they all like me a lot more than I do.
I forgot to mention yesterday that I changed where I was sitting in the office (we hotdesk), so that the two people who pace up and down while on the phone were in front of me rather than behind me. This seems to have helped. They’re just as audible, but not so distracting. It seems that noise behind me makes me more alert and anxious than noise in front of me. Unfortunately, there is no guarantee about where I’ll be able to sit over the next three weeks.
I just got phoned by a variation on this scam. Luckily I was suspicious and googled them rather than phoning them back.
I wish I could be as non-judgemental of myself as I am of others. That said, I am judgemental of others, but then I make myself think about things and realise that what they have done isn’t so bad and they probably have extenuating circumstances. But I can’t even do that with myself. I feel that I know that I’m a bad person and that while it isn’t my concern what other people do, it is my concern to make sure that I do the right thing, so I should beat myself up until I change, which never works. I don’t know what a better method is, though.
Before my meeting with the new psychiatrist on Thursday, I’m trying to write two lists. I don’t always remember what I want to say and I’m worried I’m not going to be confident about talking about alternative diagnoses, so I want to have something written I can give him/her. One list is of the depression symptoms, the other is other problems I’ve been having and other things that make me think I’m on the autistic spectrum, although I’m not sure whether I’ll say that I think I’m autistic. Please let me know if there’s anything I talk about here that I’ve forgotten.
The depression list is:
- Very low mood.
- Occasional thoughts of suicide or self-harm.
- Anxiety, especially social anxiety and anxiety related to work.
- Lack of energy.
- Poor concentration.
- Lack of motivation.
- Easily and frequently exhausted.
- Inability to experience pleasure.
- Disrupted sleep at weekends, albeit primarily on non-work days.
- Panic attacks on the way to work the other week.
The other list of symptoms is:
- Difficulty understanding and describing my emotions.
- Difficulty making eye contact.
- Difficulty reading body language.
- Body language and voice tone that makes others think I’m angry or upset even when I’m not.
- Intense interests.
- Difficulty moving from one task to another and multitasking.
- Poor spatial awareness/get lost easily.
- Difficulty holding a conversation without a prepared ‘script,’ especially small talk.
- Sensory overload from noise at work, in restaurants, etc.
- Fidgeting and stereotyped/repetitive movements (spin on chair, move feet and hands, stroke face, deliberately press on fingers or put in desk drawer).
- Tactile – I like feeling certain objects with my hands or even lips.
- I can’t always tell when people are joking.
- Difficulty remembering or understanding long and/or implicit instructions.
- I tend to stick to routines.
Some of these could be depressive, some I think point towards autism, but it’s hard to be sure. I’ve been told that I didn’t experience all of these as a child, which is one reason why I wasn’t diagnosed with autism in the past.
For some of these symptoms I know the technical terms (alexithymia, ideation, anhedonia etc.). I’ve been to so many psychiatrists and therapists and read so many books I’ve picked stuff up. But I was worried that if I used the terms, I would seem pretentious and showing off and maybe would make the psychiatrist think I was telling him/her what to do. But on the other hand they might be helpful and show that I have done some research. What do you think?
You find me on the horns of a dilemma. After yesterday I felt I should spend my downtime after work in a quiet, not-over-bright room, avoiding excessive stimulation, because of autism (or whatever it is that makes working in a noisy, electric-lit open plan office staring at a computer screen all day so painful for me). This is to improve my mental health. Unfortunately, my mental health also requires me to write about my feelings to try to deal with them. So I’m caught between autism (stay off the computer) and depression (blog). Hmm. At any rate, if you write one of the blogs I read and my comments and likes become less frequent, then it’s nothing personal, I’m just trying to cut down on internet time (which should also help with depression, as internet time becomes procrastination until I see something that triggers depression, usually about politics or religion).
I had a very stressful day. I had some minor changes to my routine because of the evacuation of Moorgate Station, but while changing trains at King’s Cross instead, I decided it would be quicker to walk up the stationary escalator as if it was a staircase rather than deal with the slowness and crowding on the moving escalator (there were three escalators, up, down and stationary). About halfway up I suddenly had a panic attack, or something approaching one, and felt I was going to fall off and plummet to my death or at least severe injury. I somehow forced myself to keep climbing, while having visions of being stuck halfway up, unable to go up or down and I did eventually get to the top, but then on the platform overcrowding meant that I was standing right on the edge and I nearly had another panic attack fearing that I was going to fall in front of the train. I don’t know what triggered all of that. Usually anxiety for me is tied strongly to either social interactions or OCD thoughts, not straightforward fears like these. I was still shaken when I got to work and didn’t really calm down until nearly lunch time.
I remained anxious much of the day. I did not cope any better with the noisy environment and wanted to shout at people to shut up. There are a couple of people who pace up and down the office while on the phone, presumably on the grounds that if they sit still and make a call they annoy a few people around them, but if they walk up and down they can annoy the whole office. I really want to pace up and down behind them making exaggerated imitative gestures like Harpo Marx, but so far I have lacked the courage to do so.
I felt overwhelmed all day. It’s hard to tease out what made me feel so bad; I would guess noise, social anxiety, fear that I was doing my job badly and going to get in trouble with my boss and maybe some other things (I’m trying to work out how I feel about the fluorescent lighting, autistically-speaking. I’m not sure). As it went on, it got worse, because the more depressed and anxious I got, the harder it became to work, which increased the fear that I was going to screw it all up and get in trouble, which made me more depressed and anxious. I ended up wanting to self-harm and biting my fingers, although that may have been autistic stimming/attempted self-soothing as much as self-harm. I did think some masochistic thoughts about being hurt.
My boss is now on holiday until after my contract expires, so if my work is bad, she’ll only be able to complain behind my back. Unless it’s really bad and they sue me for my wages.
On the way home I reflected that I don’t fit in to the world. I feel like a man in the wrong time. I don’t think this is my world, but, realistically, I don’t think it ever was. I’m not nostalgic for a real or imagined past. I used to think my utopia lay in the future, but now I’m not sure. As an Orthodox Jew I believe in a utopian future, but it is hard to see how we could get to it from here and even if it happens, I can’t see myself living in utopia, being happy and carefree.
I also reflected that I envied the wicked, but then corrected that thought. I don’t envy the wicked, I envy people who are joyous and content. I’m not entirely convinced that there are many wicked people among the truly joyous. I think joy comes from meaning and love and I don’t think the wicked have that (hence they chase money, sex, power, fame and other inadequate substitutes). I don’t really have meaning in my life. I thought I did, but I don’t. I don’t regret keeping the mitzvot (commandments), but they don’t bring me meaning and joy the way they are supposed to. I know the Midrash and the Talmud would say that this is my fault, but I don’t know what I’m supposed to do differently (“If it is an empty matter, it is from you,” “If someone says ‘I sought and did not find,’ do not believe him” – I’m quoting from memory, but that’s the gist).
I guess I do have love, but it’s always fraught with difficulty. The friends who care most about me are the furthest geographically and I rarely, if ever, get to spend time with them. I don’t think I will ever experience the special loves of marital love or the love for children. As for my family, they do care about me, but there is a barrier of communication between us. I’m not sure if it’s autistic vs. neurotypical or very depressed vs. more mentally healthy or just plain old personality and communication differences (it’s not male vs. female as I have trouble understanding and being understood by my Dad as much as my Mum and my sister), but it’s hard to understand them and to make myself understood by them.
So, that’s where I am tonight. Not really very different from every other workday night. Overstimulated, exhausted, depressed. Not anxious, but I will be in twelve hours. Oh, and I still haven’t heard when or where my psychiatric appointment is other than “some time next Thursday (8 November).” I just sent another letter, not as angry as it should be, but I used bold italics. I somehow kept a straight face when typing, “Thank you for your help.”
Today has been hard. I tried to take a test for a job I applied for, but struggled with it; I’ll have to finish it tomorrow. I was depressed anyway, and thinking that I can’t manage to do a PhD after all, then flipped back to having ideas, then to despair again. I feel like I’ve spent the last two days moving back and forth between agitated/energetic “I can do it” and passive despairing “I can’t do anything.” Maybe my psychiatrist was right about there being a bipolar element in me, I don’t know. Then I spent about two hours with my parents cleaning my old flat. I think I probably had higher tolerance than my Mum for dirt, or less time/energy for cleaning (although she usually has a paid cleaner), which embarrassed me. I didn’t have much energy or motivation for cleaning today, but struggled through and handed back the key to my landlord, so I guess I’m officially back to living with my parents.
I thought I should really start to write up my notes from my holiday in New York, so here goes:
Sunday 5 August
The flight to New York was OK. I read quite a bit and tried to write some notes for a book I want to write, but the plane was not really an environment conducive to work. There was an issue with the shuttle bus to the airport when I landed which worried me, but I got it sorted.
The hotel was fine, but had seen better days. I had to ask for a safe and a fridge to be put in my room and the WiFi in my room was patchy and I often went to the library downstairs to connect to the lobby WiFi, which seemed to work better. My room window faced a courtyard with high walls on all four sides, so no natural light came in. But it was all hygienic and there were no cockroaches or rats, so it was good enough.
Because of US laws about importing food, I had to buy food when I arrived rather than bringing anything in. The hotel receptionist didn’t seem to know where to suggest other than Whole Foods, which I suspected would be expensive organic stuff and I was right. However, I desperate, so I got bottled water, fruit, milk and then – joy! – discovered kosher bread, cereal and peanut butter upstairs.
I had some culture shock on arriving in New York, although I’m not sure why. I’ve lived in London all my life, so a big city should not have been such a surprise to me. I suppose I live in the suburbs and commute into town when necessary and even when I worked in Canary Wharf, the skyscrapers there aren’t like Manhattan, completely blocking out the sky. Maybe it was just exhaustion, anxiety, stress and mixed feelings about the thought of seeing E. in person, but I felt close to tears in the shuttle bus, although I did feel better after getting settled at the hotel and having something to eat.
Monday 6 August
E. and I were both running late, but eventually met. We spent much of the day in Central Park, looking around and chatting. It felt a bit weird that this was the first time we had met in person. Afterwards we did some shopping in the area and had pizza for dinner. It was a quiet day, but I wanted that to deal with jet lag and culture shock.
An amusing story: over lunch, E. told me to believe in myself more. Then in the afternoon we went into a Jewish bookshop where I picked up a book and opened it to a random page, which was a chapter entitled, “Believe in Yourself”. I bought the book, although not because of that.
It was a very good day, slightly marred by my getting a bad headache/minor migraine in the evening, possibly from dehydration and I couldn’t take anything because my solpadeine was still in my hotel room and I didn’t know which American painkillers are safe to take with my anti-depressants.
Tuesday 7 August
E. and I went to Ellis Island by boat via Liberty Island, although we didn’t get off at Liberty Island. I was really disappointed when planning this trip that the Statue of Liberty was sold out, but I think it may have been for the best, as I’m not sure going inside would have added much. It’s just a statue, really.
Ellis Island was fascinating, though, and I felt it struck a good balance when talking about things like Nativism, slavery, treatment of Native Americans and so on. It could either have glossed over these things or turned into a politicised privilege-checking fest, but it wasn’t either of those. I don’t know much about pre-twentieth century American history, so the exhibition about population movements in North America was actually more interesting to me than the one on Ellis Island itself, some of which I had heard elsewhere.
The weather, like the previous day’s, was hot and humid and it really stayed like that for the whole of the trip, although things got slightly cooler and less humid after thunderstorm on Tuesday evening. The only place I’ve felt so humid is the tropical greenhouse at Kew Gardens (the London one). It was very tiring being out in the heat and humidity and that perhaps contributed to my getting more tired and doing less than I would have liked over the week.
E. and I went for kosher Mexican food for dinner. I hadn’t had Mexican food before, so that was a good new experience.
Wednesday 8 August
I woke very depressed and anxious, so anxious in fact that I lay in bed for about two hours thinking that I was physically ill because I felt so nauseous. Eventually I forced myself to get up, far behind schedule, but I managed to get out on time, if only because I had planned a late start anyway.
I went to the United Nations and had an interesting tour (the General Assembly seemed to have a smaller floor space than it seems on TV), although I was disturbed by the fact they went out of their way to side with the Palestinians against the Israelis even where it was not really necessary. For example, out of all the international conflicts in the world, there was only one that got its own (big) display, Palestine (it didn’t even say Israel-Palestine, just Palestine). Then in the gift shop, one could buy postcard of the national flags of every UN member state, with the caption, “Britain”, “India” and so on. Only one said “State of X,” the “State of Palestine”, even though there is no such internationally recognised state. It’s just petty, really.
Afterwards, I went back to the hotel to pick up some things, as I hadn’t been allowed to take much with me to the UN. I ground to a halt for an hour or two, lying on the bed until I got the energy to go out again.
I was thinking of taking a bus tour of New York, but I wanted to see the New York Public Library first, thinking it would not take long, but I ended up staying for a long time. I have never seen such an ornate library! I was scared to look around because it is a working library and perhaps I should have been bolder to see more. I popped in to an exhibition on sixties radicalism, but I found it triggering for me, as all political stuff seems to be these days. I feel I don’t really fit in anywhere on the political spectrum and that everyone will hate and reject my opinions, one reason why I’m nervous about thinking of doing a PhD in a subject as politically-coloured as cultural studies.
I managed to walk to a small kosher restaurant for dinner. The food was great, but it was really crowded and noisy. In fact, I found New York as a whole much bigger, louder and smellier than London. A really bad place for autistics/Aspies, in fact. I’m OK in much of London, which may just be experience and the knowledge that I can go home at the end of the day, but New York was a very difficult experience for me at times in terms of sensory overload. Still, I navigated my way around the city by myself for the first time and didn’t get lost, mugged or run over, which I think is a win.
To be continued…