Protected: Family Drama
Autistic Purim
I couldn’t sleep last night. I think it was a weird mixture of still “buzzing,” in a good way, from the Facebook group call (for people with health issues that impact observing Jewish fast days or celebrating Jewish festivals – we have one of both this week) and anxiety about Purim (Jewish festival this week). I did finally fall asleep about 1.30am, only to wake up at 5.30am and be unable to get back to sleep.
Work was boring and went slowly. I always feel awkward eating in a shul (synagogue) on a fast day (it was the Fast of Esther) even though I’m medically supposed to eat on the minor fast days. My boss J knows I don’t fast, but I worried about the rabbi walking in, even though I know I shouldn’t (and he hardly ever does either as we’re not really a part of his shul, we just have an office in the building). I went to Minchah (the Afternoon Service) purely because I was in the building. I thought I was going to be asked to do something and have to say I’m not allowed to as I’m not fasting, but it didn’t happen. I felt more positive about Purim as the day went on, but once work ended, the anxiety came back. I’m also anxious about having to make a bunch of calls to strangers asking them to pay their bills over the next week or two. That never gets easier. Definitely the second-least favourite part of my job, after the Very Scary Task.
I got home in time to go to my local shul for the reading of Megillat Esther (The Book of Esther). It occurred to me that this is my thirty-ninth Purim, but only my second knowing that I’m autistic. I was diagnosed shortly after Purim 2021. Last year’s Purim was still a bit COVID-ey and restrained, so this felt in some ways like my first “real” autistic Purim.
When I was growing up, I didn’t like Purim much, but I didn’t know why. I felt guilty about it. I assumed it was just because I was a non-rowdy, serious, vaguely melancholic person who has trouble letting his hair down and also that I didn’t like the noise during the Megillah reading that stopped me hearing every word (you are supposed to hear every word of the Megillah, both morning and evening, but this is made harder by the fact that everyone boos the villainous Haman (Haman = Hitler, basically)). Then when I was sixteen, I was mildly ill during the morning Megillah reading in school. I didn’t know it, but this was part of my first autistic burnout.
Then across my twenties and thirties there were years when I was too depressed and/or autistically burnt out and anxious (although, again, I didn’t know that) to go to a reading at all, plus the years when I had religious OCD and I came home distraught because I wasn’t sure I’d heard every word and my religious OCD was in overdrive telling me I was a bad Jew and should go to another reading to be sure.
Now I know that I’m autistic and there are a whole load of difficult things at Purim including the noise (just in itself, without the hearing the Megillah question, but also the fact that I can’t “tune out” background noise and focus on the reading; I am aware of every cough and grunt in the room), the number of people, the removal of social boundaries (I struggle with social conventions at the best of times and now even the ones I know about are gone) and the expectation (religious expectation and social expectation) that I should have fun (is there anything more likely to stop someone enjoying something than being told that they MUST or WILL enjoy it?). In theory alcohol could also play into this, but I mostly avoid boozy places; in all my Purim struggles, I don’t think I’ve ever had anyone trying to get me to drink, which is good. Then there is the fear of autistic exhaustion or even burnout as a result of all this (lately I’ve been feeling about as exhausted as I’ve been without hitting burnout because of wedding planning even without Purim). Then on top of all these autistic issues, there are fears that the minutiae of the laws, particularly the “hearing every word” one, will send me spiralling back into OCD. And all of this together sets up a lot of anxiety: social anxiety and religious anxiety. I could feel as we started the Megillah that I was “wound up” and tense.
I might have understood all this years earlier if it hadn’t been for my alexithymia (difficulty recognising and understanding my own emotions).
(An aside: I find the Megillah reading nerve-wracking even without the “hear every word” law. I always get a weird feeling that everything hangs in the balance every year, that if we’re not careful, somehow Haman could still win and wipe out the Jews this year. We’re supposed to have this level of imaginative involvement at the Pesach seder, but not here. I have no idea why I’m like this. Maybe after the Holocaust, the idea of someone wiping out the Jews doesn’t seem like something academic that happened “in those days”. Like I said, Haman = Hitler.)
Looking at this year’s reading, as I mentioned, I was very tense the whole time. It was a noisy reading; even aside from the “Haman” noise, there were a lot of people with coughs. As it went on, I began to worry about having missed words, repeating them to myself. Then I thought the reader made a mistake. I don’t know if he did or not. I often thought this when the OCD was bad. On balance, he probably didn’t, but I worry. I actually instituted a “one reading rule” a few years back, that I can only go to one reading in the evening and one in the morning, so that I’m not tempted to repeat readings. I’ve never actually gone to a remedial reading, but I’ve come close a few times. (Another aside: I have probably missed the morning Shema prayer thousands of times over the years I’ve been struggling with sleep issues (depression, medication side-effects, burnout, suspected sleep disorder), but it doesn’t bother me as much as missing the Megillah, even though the Shema is more important (biblical vs. rabbinic commandment). Somehow, the fact that we only read it on one day in the year makes the Megillah seem more important, even though Jewish law actually rules that the more frequent something is, the more important it is.)
I tried to focus on the idea I’ve had lately that the minutiae of the laws are less important than whether I’m moving towards God. I told myself that I tried my best, and I struggle a lot more than most people, and I hope God will accept my effort. I tried not to get caught up in the obsessive thinking that characterises OCD, to keep these thoughts as passing thoughts and not obsessive ruminations that could lead to full-blown OCD again. It’s hard, but, until I can find (or start?) a sensory Megillah reading in North-West London, I don’t really have a choice.
I had dinner with my parents afterward and felt better. We had Purim bread, which E tells me doesn’t exist in the US. It’s sweet challah bread, like Ashkenazi Jews have on Shabbat (Sabbaths) and festivals, but with raisins, sprinkles (we call them “hundreds and thousands” in the UK, which E thinks is quaint) and icing, although this one didn’t have icing for some reason. I had a hamantashen (Purim pastry) too. I wore my jester’s hat for some of it, my nod to dressing up for Purim. I heard somewhere that you should dress up as something you want to be, so obviously I want to have licence to tell people painful truths by couching them in humour (my satirical novel is still in the planning stage, though).
Now I’m going to watch Doctor Who to try to relax a bit, then sleep and get up early enough to do it all over again before going to volunteer…
Purim, Being Pathetic, and the Autistic Talking Service Parrot
It was a rather stressful day again. Volunteering went wrong from the start. It wasn’t set up in advance, so we would have been delayed fifteen minutes just catching up. Then a table collapsed. I was worried I had not put it up correctly, but it turned out that a leg had just snapped off (I assume from corrosion). Unfortunately, when it collapsed, it squashed a large carton of mango juice, spraying juice everywhere, so we had to tidy that up before we could really start. Then it turned out that we had all misread the number of bags of food needed this week and we were sixteen short when the volunteer drivers came to deliver them. They ended up being added to tomorrow’s workload as it was late (the food bank operates on Tuesdays and Wednesdays, but I only volunteer on Tuesdays). I had to get home as I was talking to my rabbi mentor at 3pm, so I missed coffee even though I could have done with the sugar boost of a biscuit or two and even though I like the social interaction of sitting with the others even if I don’t say much.
Other stuff: there was some family drama that I inadvertently started. Not going into it here, but I wished I’d kept my mouth shut. I cooked dinner after talking to my rabbi mentor (the call was helpful), but didn’t do much else this afternoon. I feel like I’m struggling to hold everything together at the moment and even minor stresses like those today can feel like massive, intractable issues.
***
Other issues: I’m going to volunteer next Tuesday even though it’s the minor festival of Purim. There is a Megillat Esther (Book of Esther, read Purim night and day) reading where I volunteer, as it’s a Jewish institution, so I can listen there and volunteer afterwards. Unfortunately, I’ll have to get up very early, despite being likely to be drained the previous day with work and the evening Megillah reading (crowded, noisy). J wanted me to cover for him in the afternoon in case we have to do the Very Scary Task (he’ll be getting drunk at his Purim seudah (festive meal) as per custom), but now I’ll be out of communication for a bit in the early afternoon. I did check with him and he said it was OK, but I feel a bit guilty. I felt I should volunteer nonetheless as we’ll be several people short next week. I vaguely feel like I’m ruining J’s seudah deliberately because my seudah will probably be alone and I don’t approve of Purim drunkenness (or other drunkenness), even though that’s not really what’s happening.
The other Purim issue is struggling to do mishloach manot (gifts of food to friends). I can’t give to my parents (which I mistakenly did for many years) because we’re in the same household. I only really have two friends in the area; one I haven’t seen for the better part of a year (although I will be inviting him to the wedding) and he’ll probably be either at work or at a seudah somewhere else when I get back from volunteering (the gifts have to be given after hearing the Megillah, but before sunset). The other person is J, but I don’t know exactly where he lives and it seems vaguely inappropriate to give gifts to my boss. The timing issue might also be relevant there too.
I can’t find any charity doing a system where you can give money to them to buy food to send to someone, only for giving money directly (which is also a Purim commandment, but a separate one). I’m not sure what to do. E wondered if I can give money to be included in my parents’ mishloach manot gifts to their friends, but I need to check with a rabbi if that “counts.” This is the type of thing that makes me feel a pathetic Jonny No Mates, something that will be reinforced by the four or five sets of mishloach manot my parents will probably receive from their local friends. This is just a part of the reason that Purim is not fun for me. Actually, I do have friends, just not necessarily Jewish, local or in the real world rather than the virtual one (you can’t send virtual gifts of food).
***
I wrote to the rabbinic mental health email helpline again a while back about my struggles with spiritual growth and Torah study when dealing with autistic exhaustion. The rabbi sent back a long email that I need to re-read and process, but summarised in the quote that “personal and spiritual growth is welcome only where it enhances your wellbeing, and if you find it causes you anxiety or exhaustion- it is “off limits” for you!”
I am not sure what to make of this at the moment. I don’t think stopping growth or Torah completely would be good for me, but I keep thinking of my first burnout/depression when I was sixteen and the doctor told me to stop working for a couple of weeks. I stopped for a bit, but then went back to it. Realistically, a week or two off wouldn’t have stopped my slide towards major burnout a couple of years later, which was driven by undiagnosed autism, but I feel it shows I should take this kind of thing more seriously.
Incidentally, that first burnout/depression started on Purim, which may be another reason it’s not my favourite festival.
***
Someone on the Orthodox Conundrum Facebook group opined again that for non-married adults, the choice is between transgressive sex or “pathetic celibacy.” I suggested that Moshe (Moses) and Yirmiyahu (Jeremiah) were celibate and not pathetic. I was told by the first person and one other that they were great people and we can’t compare ourselves to them, which wasn’t really my point. (Also, this is a classic frum (religious Jewish) debating/pedagogical tactic: when famous biblical or Talmudic figures do something the speaker wants others to do, they’re examples; when they don’t, they’re exemptions who we can’t copy due to their special status. Frum girls are brought up on the Talmudic story of the woman who covered her hair even when home alone despite this being unnecessary according to Jewish law; if anyone suggested she was too holy to copy, they would get short shrift.) I said that fulfilling the will of God isn’t pathetic and was also told that “pathetic” was being used in the sense of “inspiring pathos” which seemed pedantic and unlikely, and that something can be admirable and pathetic at the same time.
At this point I gave up on the argument, but it touched a nerve as for years I did feel pathetic for failing to attract a spouse and did want people to pity me, on some level, but I also feel, particularly in retrospect, that it was, at least on some level, difficult and admirable for me to stay a virgin for so long (by the time I get to my wedding, I will be just two months short of my fortieth birthday). I am reluctant to describe myself as “pathetic” in either sense.
***
E and I were talking about service animals and I decided I need a talking service parrot that will sit on my shoulder and make small talk to people for me when I can’t do so.
***
I just read an old Dilbert comic strip the joke of which was that Windows 95 was new and exciting and I felt ridiculously old, although not as much as when E and I went to the Museum of the Home last year and I heard a small girl look at a landline phone and say, “I’ve seen one of these before, but I don’t know how to use it.” It was possibly a rotary dial phone, but even so.
Wedding Anxiety, Religious Anxiety
I feel quite stressed and anxious, partly about the wedding, partly aware that E is struggling with things at the moment and I can’t help her. I’ve contemplated jumping on a plane just to give her a hug, but she said not to, and, for reasons I won’t go into here, it might actually make her situation worse, in practical terms, if I did, so I just have to wait. It’s very frustrating. I guess now I know how my parents felt for years when I was struggling with depression/burnout and they couldn’t do anything for me.
Once I get to that point, my thoughts start to spiral out of control worrying about how two people with so many diagnosed and suspected neurodivergence/mental illness “issues” between them, and such an insecure income as a result, can actually be happy, particularly when my parents aren’t able to help any more, practically and financially. At least we’ll be together, that counts for a lot. It’s scary, though.
Other than wedding/marriage/future stuff, I’m worried about Purim, the minor Jewish festival coming up in about a week and a half. I’m actually more worried about Purim than Pesach at the moment. Pesach is a more major festival a month later that triggered my religious OCD much more than Purim in the past, but I think that’s under control now. Purim triggers a lot of things, like OCD, social anxiety, perhaps autistic sensory issues, social overwhelm and so on as well as feeling like a loser for having no (local) friends. Ugh.
***
In terms of the last few days… on Thursday I had to do the Very Scary Task at work. I think I’m getting better at it, but it’s still hard and I get flustered and confused on the phone, especially if J isn’t around. On the plus side, I did get to go out to the Post Office and do some shopping which at least broke the day up a bit. I spent the afternoon doing a very boring printing and scanning job that is not yet finished. After work I went to Sainsbury’s and was so distracted and confused that I nearly left my food behind. I also collected my glasses with new lenses and left my spare pair so the new lens prescription can be put in them. I have to remember to wear the spares on our wedding day otherwise my glasses will turn tinted from the sunlight/camera flash (the everyday glasses have reaction lenses, but the spares don’t).
I was exhausted again on Friday. I probably would have been OK if I could have had a mental health day (autism day?), but even minor Shabbat (Sabbath) preparation finishes me off on Fridays recently. I felt too exhausted to go to shul (synagogue) again, which upset me a bit. I feel as if I’m drifting away from the Jewish community, while still believing and practising Judaism privately, and the Purim anxiety is a part of this. I don’t want to do it, but it’s what my mental/autistic health seems to demand right now and I feel that if I go away, the community won’t come after me they way they would for someone more involved and connected. I’ve never really felt fully a part of the community, except maybe for two or three years in the shul I grew up in, before we moved. Three years out of nearly forty is not a good record.
My uncle is here for the weekend. We had a good time at dinner, but there are aspects of the family dynamic that I find uncomfortable. I mentioned the other day that E and Nephew joining the family has changed the family dynamic, which it has, but there’s been another, more subtle, shift for a decade or more that I don’t feel comfortable with, but it’s not really my place to do anything about it. The problem is that I get sucked in and say things that I later regret. Speaking of which, I said something completely different (unrelated to family stuff) that I immediately regretted for religious reasons. I am trying not to beat myself up about it and accept it was a slip of the tongue, but I expect myself to be perfect.
I had a headache that got bad enough that I took tablets for it on Shabbat (the rules about taking medication for minor ailments on Shabbat are complicated. In the past I was very strict with myself; now, as in other things, I’m trying to tell myself that sometimes it’s more religious to be more lenient. It’s hard, though). I lay on the bed for a bit after dinner because of the headache. Lying down made it worse, but I propped myself up by the headboard and covered myself with my weighted blanket and adjusted the Shabbat lamp so there was only a little light.
After a while the headache went and I wanted to do some Torah study before it got too late. Like last week, as it was late, I went for depth over length of time, studying some Talmud (reviewing the page I’m on) and a chapter of Shoftim (Judges). It took about forty minutes in total. After that, I read for fun for a bit, finishing Greenmantle and starting Harry Potter and the Prisoner of Azkaban before going to bed.
Today was more of the same, really, until Shabbat ended and the anxieties I mentioned above kicked in.
***
I worry that I over-shared on the Orthodox Conundrum blog Facebook group on Friday. There was a thread about Orthodox men not wanting to date women who study more Talmud than them, or better than them, and I asked if the reverse is also true, wondering if I got set up on so few dates in the Orthodox community because I didn’t go to yeshivah (rabbinical seminary). To be fair, there were plenty of other plausible explanations for my lack of dates, but, as you know, I’m paranoid that my failure to go to yeshivah or to study Talmud at a high level marks me as a “bad (frum/religious) Jew” even though I know that the idea of universal male yeshivah study or Talmud study for all but an elite is a product of not much more than the last century, not the entirety of Jewish history.
Perhaps relatedly, on Friday night/Saturday morning, I dreamt I was back in school. I had done my BA and MA, but, somehow, not my A-levels, so I had to come back to do them, but I was in the middle of burnout again and felt I couldn’t finish the course. Of course, I probably did have burnout when I did my A-levels, but it was mild compared with the burnouts during my BA and MA. I think the dream is about me trying to come to terms with not being the academic success that my achievements at school led me to think I would be, particularly in terms of secular academia, but also in terms of the frum community, where so many people seem to be able to study Talmud at a much higher level than me and where this seems to count more than other types of religious knowledge and perhaps even than being a good person in some circles.
***
It turned out that I did not copy all my music (or my non-classical music) to my phone. I need to delete some phone apps and try again…
Thief of Joy
It’s been a tough twenty-four hours. Last week I felt I was getting my life on track, but I worry that I’m too prone to autistic exhaustion to earn more or to cope with children. Last night I was looking at the last twenty years, dominated by depression and/or autistic burnout. Sometimes it feels that I have nothing to show for that period until E arrived (OK, two degrees that have not got me far). I have to believe that there is meaning in those years or that I can give them meaning. That I met E in the end and before then I grew resilience and empathy, but it’s hard to feel that sometimes, particularly as I feel I’ve suffered “autistic regression,” essentially losing skills as a result of burnout.
These thoughts were inspired by seeing the blog of someone autistic who I felt was doing a lot better than me at life. Looking at the post again today, that’s not necessarily the case, but either way I failed at not comparing myself to other people, even though I’m trying to work on that right now. And, yes, there are autistic people worse off than me and not just severe autistic ones. On the autism forum it seems that, of relationship, children and career, people rarely have two let alone all three and some don’t have any. I have a relationship and while I don’t have a career I at least have a part-time job. I still hope to have children (and maybe a career). Of course, many people join the forum because they’re struggling, so that probably creates a bias in favour of less successful people.
I do feel I struggle with Orthodox Judaism placing a lot of emphasis on doing things, learning, growing as a person. There is a whole concept of bittul zman (wasting time) or bittul Torah (wasting time that could specifically be dedicated to Torah study) to show that we should constantly be thinking about using our time productively. It’s hard to feel that I can or maybe should take things slower. Maybe this is a question to ask the rabbi I emailed a while back (from the helpline of rabbis trained in mental health).
***
Today was stressful: train problems on the way in, a lot of noise at work, boring work (although I could at least listen to a podcast today) and an unexpected visit by our treasurer, which put me on edge at having someone else in the office, especially as he had no real reason to be there and was just killing time. I was still exhausted and stressed from yesterday and the noise, boredom and unexpected peopling made things worse and really put me on edge. I didn’t stay for Minchah (Afternoon Prayers), but felt bad leaving as people were coming in (fifteen minutes early!).
I also worry that, if I was wearing noise-cancelling headphones, as I would like, I would have missed an important announcement about the train problems this morning and could have ended up halfway to Bank before I realised I was on the wrong branch of the Northern Line (the train switched lines).
Emotionally, I have had some Purim anxiety today. Purim is the Jewish festival in two weeks’ time and it is not autism-friendly at all (as well as also being an OCD trigger risk for me). Maybe that’s something to ask the mental health rabbi too.
I do frequently feel stressed and overwhelmed at the moment from wedding planning. I feel like I’m struggling with alexithymia regarding it. I have depression from work and anxiety from the wedding as negative emotions always make themselves felt, but it’s hard to tune in to the excitement especially as it’s so hard being away from E. I need to try to push the anxiety and impatience to excitement, not depression, but I don’t really know how.
Cause Without a Rebel
There’s been some anxiety hanging around over the last few days, partly around social media use and whether I should try to make friends on it, if I just make a fool of myself trying to connect with people, if we’ll argue about politics and so on. When I went back on Facebook, I intended to use it mainly for groups to avoid this kind of drama, but I guess inevitably as I get to know people in groups, I will want to connect with them outside the groups.
Another worry is that I feel I want to get to a place where my life is ‘sorted’ and stable, at least for a while, but that may never happen. At least I have E, even if she is on another continent at the moment, but I want my life to be stable so our life together will be stable and easier for her, but I think we both have too many ‘issues’ for that. I just feel that E is having to sacrifice so much for me that I just want to make things easier for her.
Shabbat (the Sabbath) was OK, but not great. I got to shul on Friday night for the first time in a couple of weeks. I was feeling somewhat down, not literally clinical depression, but colloquially depressed. I spent a lot of time in bed, as usual, not just at night/morning, but after shul (synagogue) on Friday night and again after breakfast this morning and twice in the afternoon. Going to bed was more seeking autistic sensory comfort than from tiredness; I wrap myself in my duvet and/or weighted blanket and/or curl up in the foetal position and it calms me down.
I spent a lot of time (in bed and outside it) thinking about autism, disability, autistic superpowers and whether I would be better off without being autistic and this probably contributed to the depressed feeling. I know I’ve written about this before, but I just can’t share the view that autism is merely a difference or even a strength and that the only struggles from being autistic come from the supposed “ableism” of society. In the end, I concluded there were too many variables to meaningfully describe what my life would be like without autism, and that God clearly wants me to be autistic. Even so, without knowing what my mission in life is, what He wants me to accomplish by being autistic, it is hard to work out if my focus should be on paid work, writing or religious obligations.
I really missed E a lot too.
Other than that, I ate far too many pretzels (the little kind) and probably too many biscuits (although not nearly as many as the pretzels) and had a very mild, but persistent headache intermittently from Friday night until an hour or so ago.
After Shabbat, I discovered I had a begging letter from the University of Oxford again, this time from the History Faculty (my BA was in History). I get them every so often, because even Oxford, the oldest university in the English-speaking world and one of the most prestigious and highly-rated, has money trouble (within reason. A lot of the colleges are vast landowners and completely loaded). To be fair, the cause they wanted to raise money for is worthwhile (to increase access for students from poor backgrounds), but I had a miserable time at Oxford and prefer to send my money (a) elsewhere and (b) to causes that are more ‘life and death’ e.g. food for refugees or those on the breadline. But getting these begging letters just reminds me that I went to Oxford and I should therefore now be a super-successful, super-rich hot-shot lawyer, politician or high-ranking civil servant and not a poor, part-time office administrator. It’s sad that, so many years after making me more miserable than I have ever been in my life (I very nearly attempted suicide), Oxford is still making me miserable.
Other than that, I’ve spent too long this evening writing this post and reading autistic forum and autistic relationship FB group posts, and I’m not entirely sure why. Something about trying to connect with people and understand myself as well as deal with fears that being autistic means not being able to manage relationships. I don’t think this is the case, but it’s disturbing to read, on two different forums (fora!), two different people talking about essentially being verbally and emotionally abused by their autistic partner, who says everything they do wrong is down to autism and therefore (they argue) beyond reproach.
On one forum someone wrote about getting meltdowns from, “seeing everything in great details, hearing every minute sound at the same level, pretending to be happy when inside they are dying and not liking the fake people surrounding them, smelling everything that each person has used in bodycare/fragrance/hair products etc, feeling exhausted from the pointless chat about weekends to a point where disassociation happens, feeling like people training you are talking but you can’t hear it because you feel so stressed and in shock that your mind cannot connect” and more. I’ve experienced some of this, but I don’t really get meltdowns. Very rarely I get panic attacks that probably verge on meltdowns, but I haven’t had one since knowing more about autism to be sure.
I wonder why I don’t get meltdowns when so many autistic people do. Not that I want them, but not getting them reinforces the feelings I still occasionally get that I’m not “really” autistic, or that I’m not autistic “enough” to justify the work and social problems I have. Maybe I’m just good at masking and then end up burnt out. I do get shutdowns, but, again, not as bad as some people get.
***
A couple of thoughts from things I’ve been reading/listening to lately:
Both a devar Torah (Torah thought) I read from Rabbi Lord Sacks z”tzl and an Orthodox Conundrum podcast about Rav Shagar z”tzl spoke about parents and the need to differentiate from them, and then later to realise how much you have in common with them and how much you are indebted to them.
As a teenager, I never really tried to rebel. I just spent all my time in my room, working and driving myself to a breakdown/burnout. But I didn’t have much in common with my parents either. Now I find it can be hard to find common ground with them. Some of this is living at home into my late thirties, some is being autistic with allistic (non-autistic) parents and some is me having classic “first generation to go to university” differences from them. Some is probably my being more religious and more Jewishly-educated, which often creates a dynamic where my parents look to me for Jewish education and halakhic (Jewish law) guidance. There’s a Jewish saying that when a parent teaches a child, both laugh, but when a child teaches a parent, both cry, and I feel that a bit sometimes. I’m not sure how to explain it to anyone who hasn’t experienced it. I had a psychiatrist who said that I never really bonded with my parents as a child and therefore could not rebel as a teenager, and now I can’t separate properly from them which is probably true. It’s only with marrying E that I’m really trying to move away from home. I did live in my own flat for two years when my OCD was bad, but I deliberately lived within walking distance of my parents’ house and I used to come home for Shabbat. I don’t know what I can do about this at this stage.
***
On the same Orthodox Conundrum podcast, R’ Zachary Truboff spoke about Rav Shagar thinking that the problem with Orthodoxy is that it’s Orthodox: i.e. that, as a society, it’s driven by what other Orthodox people think is appropriate, not by what God wants. He said there are things that are against halakhah and ethics that do not lead to people getting thrown out of the Orthodox community (he didn’t say what, but tax and benefits fraud spring to mind). He didn’t mention, but could have, that there are things that aren’t violations of halakhah or ethics, but which can get you thrown out of the community all the same (this varies from one community to another, but in some communities for a teenager to talk to someone of the opposite might fall in this category, or even refusing to marry a particular person in some communities). I think this is my biggest struggle with the Orthodox community. Aside from the moral aspects of this, being on the autism spectrum means I’m OK with clear rules (halakhah), but bad at intuiting, let alone following, unspoken social conventions.
***
Anyway, my parents are noisily watching No Time to Die, the latest James Bond film, in the room below me, which is a bit distracting as I can hear incidental music and bangs. I wasn’t tempted to re-watch it with them, as, while technically accomplished, I found the film overlong, confusing and too sad. James Bond isn’t supposed to be sad! I much prefer the supposedly “silly” Roger Moore films. I could probably find ten reasons why the much-maligned Moonraker is a great film, not in “so bad it’s good,” but actually good.
Grief and Autistic Halakhah
Being away from E seems to be getting harder and harder. It feels just as bad as when my loneliness was at it’s worst, except focused on one person rather than an abstract desire for a relationship. Hopefully her visa will come soon…
***
I’m still thinking about Ashley, but not quite so much, although I don’t know how much of that was being distracted by other stressors. I’m reluctant to say much here, as it feels vaguely like I’m appropriating pain that should really belong to her family. I felt some other guilt too. I’m not sure I can remember all of it, but some of it was feeling guilty that I’ve been more affected by Ashley’s death than those of my grandparents. I feel that that’s wrong, that the death of my grandparents should have affected me more. The two aren’t exactly comparable, though. My grandparents were quite old, mostly in their eighties. It was sad when they died, but it didn’t have the tragic aspect of young death, or suicide.
Another factor is that, in a strange way, I feel I didn’t know all my grandparents in an adult way, in the way I knew Ashley, even though I was sixteen when the first of my grandparents to die passed away and had known them all my life. They were just there, like my parents.
My paternal grandmother died when I was sixteen and about the same time my maternal grandmother was diagnosed with Alzheimer’s (the symptoms had been there for quite a while, but from this point on it became very noticeable). I feel like I didn’t know them as an adult, only as a child. I remember my paternal grandmother as very anxious and I didn’t really understand why (or is that an adult interpretation? Did I just accept it at the time?). I think I would better understand her depression, anxiety and agoraphobia (all unspoken of at the time) now.
I felt that I was only beginning to get to know my maternal grandfather when he died when I was nineteen, a few months after my maternal grandmother. I felt like he had begun to talk to me more as an adult in the last few years and suddenly that stopped. I did know my paternal grandfather rather better as he died when I was nearly twenty-seven. But I think in retrospect it’s my maternal grandfather I think of more often. Since my autism diagnosis, my parents have speculated that he was on the spectrum too, so maybe that explains why he felt more comfortable talking to me than his children about his past.
Episodes of depression/burnout followed in the months after the deaths of my grandparents, but in retrospect, I’m not sure that there was a causal link, except perhaps the death of my maternal grandfather, as the depression really did follow in just a few weeks. The others were more spaced out.
Another factor is that, when most of my grandparents died, I was still very emotionally immature. I know I write about my feelings most days now, but in my teens and twenties, I really didn’t understand what I felt and couldn’t put it into words, even more so than nowadays. It’s taken years of therapy and, I suppose, blogging, to get to a point where I can begin to understand what’s going on in my head.
Anyway, I managed to get an appointment with my therapist for this week, so hopefully it will help to be able to talk about these feelings.
***
Away from this, further guilt came when J said that I asked for three days off later this year to go to New York to see E, but I only had two days of holiday left. I felt bad about this, although I think the confusion came because he’s rounded down my number of holiday days, given that my contract didn’t start until February whereas the holiday year started in January. Even so, I felt vaguely bad for not realising. I made loads of these terms of work mistakes at my job in further education and still feel embarrassed. I think HR must have hated me. Taking one day less holiday doesn’t affect my plans, I will just have to work the day before I fly instead of packing.
***
J sent me to Selfridges to try to get some duplicate keys cut. Selfridges seemed more crowded than I was comfortable with (although probably less crowded than it should have been, less than two months before Christmas; I guess people are not spending on luxuries). I had one of those moments when I think that everyone I see is a human being with their own thoughts and emotions and I freak out a bit. I don’t know why this happens. Aside from the crowd, the muzak drove me crazy. Different parts of the store were playing different music and I could hear bits of different songs at once in painful aural mush. I don’t think this is an autism thing so much as a ‘having taste’ thing. When I finally found the key-cutting stall, I struggled to hear the assistant over the shoe repair machinery, but they didn’t have the right size blank keys to cut the new ones. I will probably have to go elsewhere on Thursday
The whole experience left me feeling overwhelmed and near to tears. I feel like I used to be able to cope with experiences like this (I used to commute into town on the Tube and buses every school day at rush hour!), but no longer can. Some of it may be getting older (it is a recognised phenomenon that autistic people become less able to cope with sensory overload and less able to mask their autistic symptoms as they get older), but I wonder if COVID lockdown has eroded my tolerance for these things, along with boosting my social anxiety? Or if I recognise the overwhelm more since my diagnosis.
Similarly, when I stayed after work for Minchah and Ma’ariv at the shul (Afternoon and Evening Prayers at the synagogue), I felt overwhelmed even though there were only fifteen or so people in the Beit Midrash (not a huge room, but not tiny either). Is this social anxiety or autistic overwhelm?
I was still feeling overwhelmed when I got home, but not light-headed, perhaps because I ate an apple in the office mid-afternoon and a cereal bar after Ma’ariv. I used to eat on the way home from work, but COVID has scared me off eating on the Tube.
***
Between Minchah and Ma’ariv, the rabbi quickly taught a halakhah (Jewish law). What it was isn’t relevant, but he took the mundane nature of the halakhah in question as an example for halakhah (in the wider sense of the Jewish legal system) being all-encompassing and supportive no matter what happens, that it “has our back” in his words.
I did not feel 100% comfortable with this. I do not feel that halakhah always has my back. I feel that there’s a lot I should be doing, according to halakhah, that I can’t cope with right now or perhaps ever because of my social anxiety and autism. I feel I would need an “autistic halakkah” to help me.
A while back I heard that Rabbi Yoni Rosensweig has set up an institute to try to train more rabbis in mental health awareness so that they will be able to respond to people with mental illness more effectively. He has also published a book of answers to halakhic questions regarding mental illness. I feel that someone needs to do the same thing for neurodiversity.
***
The other day Suzanne said that my life is interesting. My immediate thought was that my life isn’t interesting, so it must just be the way I write about it. Then I realised that I was in a low self-esteem double bind: either my life is interesting or my writing is interesting! I’m not sure what I think about this (just kidding).
Burnout Fears
Today was an OK day at work, enlivened (if that’s the right word), by feeling particularly awful when I got home. I hope I can go to volunteering tomorrow. I posted the following on the autism forum:
I feel exhausted after work. OK, many people, ND and NT [neurodivergent and neurotypical] do. It often feels like autistic exhaustion and I can’t do anything else that day and sometimes not the next either (I work two days a week). But over the last few months (I’m not sure when exactly), “exhausted” has become light-headed, dizzy, faint and generally unwell, although articulating more precise symptoms than “unwell” is hard. Sometimes it persists into the next day.
Has anyone else experienced autistic exhaustion like this?
Unfortunately, there are a lot of other potential suspects to eliminate:
– dehydration (but it doesn’t always go after drinking).
– low blood sugar (but it doesn’t always go after eating).
– low blood pressure (I do have low blood pressure, but this doesn’t seem like a normal ‘standing up too fast’ headrush and lasts a long time).
– medication side-effects (entirely possible, but I haven’t changed meds for a while, so it seems strange that it would just start).
– sleep issues (I’m being investigated for a sleep disorder, so it could be tiredness related to that, although sometimes it persists after sleeping).
Thanks for helping!
[End of quote.]
I’m probably going to go to the GP about this, either this week or next week. I can’t decide how urgent it is. Some people suggested diabetes or iron deficiency. I think I was checked for iron deficiency a few months ago, but I don’t remember when I was last checked for diabetes (years ago I had a GP who would test me annually for reasons I could never understand). Unfortunately, the comment that resonated most with me was the person who said it sounded like her “stress” symptoms, which in retrospect seem a lot like autistic burnout to her (and to me when she related it).
I do not want to burnout again!!!
I struggled through my BA and MA because of depression which seems to have involved a burnout component, at the very least. I spent years unemployed and pretty much doing nothing because of it! This is not how I want to start my married life! Even aside from the fact that burnout is not really well-understood or even acknowledged by all of the medical establishment. I really hope this doesn’t mean I can’t work at all, or even not in the going out to work sense as opposed to working from home (although if I can find a way to work from home, that would obviously be better).
***
E and I had a Skype call, but both of us were feeling exhausted and ill. Long-distance is hard when you feel ill and can’t just curl up together.
I started a rewatch of The Evil of the Daleks, a seven episode Doctor Who story from 1967. Only one episode survives, but the missing episodes have been animated using off-air audio recordings of the missing episodes. I watched this with E in the spring, but as it was the first Doctor Who story we watched together, and the first animated reconstruction she had seen, I was rather nervous and focused on her reaction. The animation on these reconstructions is not exactly Pixar standard and takes some getting used to and I wasn’t sure if she was put off by it. I wanted to rewatch to focus on the episodes. As E’s mother is staying with her, we can’t really watch Doctor Who ‘together separately’ as we had been doing for a while, so I thought this was a good time to watch it, especially after feeling disappointed and confused by last night’s new episode.
What Do You Want?
I struggled with sleeping again last night. I couldn’t sleep, then had to get up early for work. J sent me to get some food for a meeting tomorrow, including kosher sandwiches. Apparently a couple of supermarkets in the West End have them. I duly went to these and couldn’t get the sandwiches. I did get some drinks and crisps, which turned out to be so heavy that the bag I was carrying them in tore and I had to carry them awkwardly in my arms. J thinks it is possible that Selfridges had the sandwiches and I didn’t look in the right place (they aren’t with the other sandwiches, apparently), which led me to feel self-critical, as I had had that thought after I left the shop, but decided not to go back and look again.
As well as that, I managed to walk in an area that was cordoned off for building works. I’m not quite sure how I managed to do that, or why I thought it was a pedestrian walkway and not cordoned off. Things went downhill from there, as I started to feel very overwhelmed by the numbers of people, not just the crowds, but thinking that these are all individuals with their own thoughts, feelings, likes and dislikes… It’s quite an overwhelming thought to have. I tried to shut out some of the noise with music (silence might have been better, but wasn’t an option as the street was so busy), but the headphones I found to replace the ones that broke last week are not very effective. I haven’t had a panic attack for years, and I don’t generally have meltdowns (which are technically just intense panic attacks), but I felt like I was on the verge of one. I didn’t have one in the end, although not due to anything I did to prevent it. I just got lucky.
Just to cap it all off, I got home to discover that HMRC (the taxman) has fined me £100 for not filling in a tax return for the tax year ending April 2021. I didn’t send a tax return for the very good reason that I was unemployed for half the year and then working varying amounts in the remaining months and, even counting the benefits I was receiving that I’ve subsequently been told to pay back (even though I told them NOT to pay them to me in the first place as I was working), I was still earning less than the minimum needed to pay tax. But I’ll need to work out exactly what I earned for that year, including the benefits and bank account interest. More likely is that the tax return I filled for the tax year ending April of this year has made some jobsworth pen-pusher at HMRC decide that I must have earned the same amount the previous tax year. I don’t really swear, but I want to award lots of choice four-letter words to him (or her).
This does make me worry about how efficient the Home Office will be with E’s visa application. There’s no logical reason why one would impact the other, but I’ve had such a hard time lately with the HMRC (who recently paid me rather more than £100 that they had wrongly taken from me) and the Department of Work and Pensions (the benefits overpay issue) that I am pessimistic about any government department functioning efficiently.
I felt physically ill from the stress of the day, coming in the midst of other recent stresses. I was physically exhausted, light-headed and headachey. Eating and drinking didn’t help. Mum suggested drinking orange juice, and it did seem to help, so maybe my potassium/lithium levels were out of whack. Really I should have taken time out to chill without computer or phone, but I had so much to do, so when I got home I went online and started dealing with the tax thing and blogging.
I did feel a lot better after dinner, Doctor Who and Skyping E, so that’s good. I am a bit nervous about coping with tomorrow, though.
***
The worry that I was going to have a panic attack earlier fits with how I’ve been feeling lately: overwhelmed and at times very sad without really understanding why, as well as intensely missing E. These feelings generally do not always long, but I worry about drifting back into clinical depression or burnout (I’m not sure the two are easily distinguishable for me), especially as my previous episodes of depression mostly started in the autumn, as the days grow shorter and the weather less pleasant.
Alexithymia (difficulty recognising and understanding my own emotions) makes it harder to tell what my general emotional state is, because intense negative feelings are easier to recognise, thus potentially making my emotional state seem worse than it really is.
An additional problem with alexithymia that I’ve only just really noticed is in recognising emotions related to my religious experience. If I can recognise depression, anxiety and loneliness more easily than joy, love and equanimity, it’s no surprise that I find the former more than the latter in my religious experience. Does that mean my religious experience is overwhelmingly negative? I don’t think so, but more because I can’t see how I could have stuck with it for so long if it had been negative. But the question, which has been nagging at me for years, but is more urgent now I’m starting my own family, is how to increase the joy, love and equanimity and make it more tangible.
A question I’ve never really asked myself in a religious context is, “What do I want to do?” I don’t really know how to answer this question at this stage. Until now I’ve tried to do what the halakhah (Jewish law) requires, sometimes being overwhelmed by temptation or mental health and neurodiversity issues and sometimes compromising to fit in with my parents. What I want hasn’t really come into it much, or doesn’t feel like it has. I wonder, if I searched myself, if I would find that it has been there, but subtextually, disguised as other questions.
Also, I have never really understood how people can be so certain about what God thinks: “God will punish X” or “God will forgive Y.” Heinrich Heine said on his deathbed that, “God will forgive me. It’s His job.” Heine had done some bad things and I wouldn’t have been so sanguine in his position. Would I go to the other extreme and assume that God would want to punish me? It is hard to tell. When my religious OCD was bad, I was more focused on the awfulness of breaking halakhah in itself rather than punishment, but a part of me also took it as read that I would have no share in the next world.
(There is a specific question here that I’m thinking about, but I’m not sure I should discuss it here, and I certainly don’t have the time today.)
***
When I got my invisible disability lanyard for the airport, Mum mentioned that her friend, who usually travels with a disabled family member (either her mother, who has dementia, or her daughter, who has CFS and severe depression), lets the airport authorities know in advance and gets fast-tracked through the airport. She (Mum, not the friend) felt I should do the same. I felt uncomfortable with this idea, primarily because I didn’t feel my problems are “bad enough” to do that and felt that it would almost be dishonest to do so.
Today I saw someone on the autism forum say that he does this. This is someone I see as much more capable than myself, as he was in regular employment as a research scientist for decades, has been married for many years and has two adult children. So I am slowly considering that this may be an “acceptable” thing for me to do, although I don’t know if I’ll feel ready when I hopefully go to New York to see E later this year.
Not Functioning
I feel completely burnt out today. I had some not very restful sleep with a strange and slightly disturbing dream. I’m struggling to do anything, although I’m trying to do my pre-Shabbat chores and some visa document scanning/printing. I feel almost physically ill with exhaustion. I lay down in a dim room for half an hour just now which helped, although I’m still not sure if I’ll go to shul (synagogue) tonight.
I discovered that the guy I spoke to yesterday from the building society, who supposedly told me how to print an official PDF statement from my online account, was wrong, or the site isn’t working properly. Either way, I can’t get what I need for the visa, so I’ll have to phone the local branch next week and collect it in person, if I can explain myself adequately, which I worry about after the difficult phone calls yesterday. I hate doing stuff over the phone and in person. I feel like I really can’t cope with those when I’m burnt out and at the end of my tether. (Awareness of my autism has definitely sapped my self-confidence.)
I’m also worried about E’s visa application being rejected for some trivial reason or other. This fear has been worsened by the realisation that I have to declare the benefit money I was mistakenly paid by the Department of Work and Pensions (they continued paying me benefits after I repeatedly told them I was now earning too much to qualify) as it will be visible on the bank statements requested, so I can’t deny it or even just omit it. Incompetent bureaucrats.
I worry how E and I would cope with having children, given our low energy levels (for different reasons). Hopefully E’s energy will return soon, but I worry that she has long COVID. As for myself, I am wondering if I should pay for a private sleep study to get some idea of whether I really do have a sleep disorder, but private medical care is so rare here that I’m not entirely sure how I would do it. I did google and found somewhere that looks possible, but I have not had time yet to investigate how reliable it is. To be honest, I feel that, if nothing else, I need to know I have a real issue to stop feeling guilty for having missed so much shul (synagogue) over the years, although, as I can get up for work, realistically social anxiety is probably a factor there too, combined with my feelings of not fitting in to the frum (religious Jewish) community. That feeling of guilt is always bad at this time of year, both because of the emphasis on growth and repentance and the many long shul services over the festivals with much greater than usual attendance, including the special mitzvah (commandment) of hearing the shofar (ram’s horn trumpet) on Rosh Hashanah (Jewish New Year).
One In, One Out
I spent the afternoon printing and scanning bank statements for E’s visa application (to prove we will have enough money), only to discover they need to be on bank stationery, stamped by the bank or accompanied by a letter from the bank to authenticate them. I know from experience that my bank simply will not print bank statements more than three months old, so it looks like I’m going to have to phone them to get some kind of appointment to get the statements printed or authenticated there, and also at my building society, as I need proof for both my current account and my savings account. This is yet another hassle and has left me feeling close to burnout. Other than that, I did go for a walk (I need it after that), but did very little Torah study, or anything else productive.
I feel exhausted and close to being overwhelmed and perhaps burning out. I’ve gone in the space of a week and a half from getting married (civil wedding) in a foreign country, to leaving my bride of one day (who is still weak from COVID) to come back to the UK, to going straight back to work, then having my aunt and uncle staying with us (me and my parents) and trying to sort out the visa so E can follow me to the UK ASAP. I haven’t had time to process the civil wedding, to process being separated from E for an indeterminate period, or even to just be myself for long periods without having to mask around other people. And on top of all that, I have the oncoming stresses (religious, emotional, practical, social) of the Jewish autumn holiday season and the slow dying of the light as we get to autumn, with the risk of triggering depression and maybe anxiety in me. I really feel like I need some self-care time, but I’m not sure when I can do that and I feel guilty about even thinking about it. I watched Doctor Who for twenty-five minutes over dinner, but it doesn’t really begin to address that.
My parents are away next week. That sounds like it might be a break from peopling, but my mood does tend to dip when I’m in my house alone, even aside from extra chores. What I really need is to live with my best friend, but she’s in New York.
***
I sometimes I feel I have a “one in, one out” system on my blog whereby when I gain a new reader, I lose an old one, and I feel that’s happened recently. I’m sad and vaguely worried that I did something wrong, but also aware that friendships tend to be transient, particularly online ones. I do wonder sometimes about blog readers of years past who just vanished one day, particularly if they weren’t active bloggers themselves for me to see if they were still doing anything, but I know I’ve also stopped reading blogs for reasons that have nothing to do with the writers and everything to do with where I was with my life.
I did write something in comment on someone else’s blog recently about being diagnosed autistic (this was someone who doesn’t know about this blog and only knows me via my old, non-anonymous, pre-autism Blogger identity). I felt in a way that I needed to apologise for and explain my sometimes-inept behaviour over the years, but I think I just freaked her out. I guess it is a big thing to suddenly write about in a post that wasn’t entirely connected. I do tend to feel the need to apologise to people for how I behaved before I knew I was on the spectrum when maybe I should just draw a line under it and move on. My first novel was, on some level, a way of doing this, which I guess is one reason why I’m tempted to just rewrite to remove most of the autism stuff.
How to Destupidify myself?
I didn’t have work today, J having switched my days this week. This was probably for the best, as I slept a long time after all the stuff I was doing yesterday (tax return, visa form). The house was almost empty when I woke up, just me and Dad. I know that’s the usual number of people on a weekday, but after so many being around for the last few days, it felt empty. Dad made some enquiries on my behalf about changing shul (synagogue) membership to get married by my parents’ rabbi. We don’t have to change it for a while. When we do change, I think we get a year of free membership in any shul in the United Synagogue, so it’s worth not changing that until nearer the time, although Dad feels I should continue with membership of my current shul until then “just in case” (this is him being morbid, meaning so that I’m not left without burial membership anywhere for a number of months, just in case I drop dead suddenly). I’ll go to my parents’ shul for the Yom Tovim (festivals) as my shul will be in its new premises, twice as far away. If I wasn’t getting married, or was getting married there, I might have still gone there, but it seems silly when I won’t be going there much longer anyway.
Today was mostly spent on the tax return (which was a real headache, but which I still need to spend some time on, despite having spent about three hours on it already) and scanning documents for E’s visa application. I didn’t manage much of the latter, as the tax return left me exhausted. I did get a walk in, which I didn’t manage yesterday, but I only did a few minutes of Torah study, compared with more yesterday.
I miss E a lot and I know she misses me. It’s hard being apart for so long when we already feel married.
I did manage to phone about pre-marriage classes for E and myself, which is positive, especially as I had a lot of social anxiety about the call beforehand.
***
As I mentioned, I’ve been filling in my tax return. It seems really difficult. I feel like, “I’m autistic, I’m supposed to be good with numbers and methodical; I am (or at least I was) a librarian, which is also supposed to make me methodical; so why do I always struggle to find the documents I need, and to find the right figures on the documents once I’ve got them?” The papers aren’t even in that much of a mess, they’re actually organised reasonably well, but somehow the piece of paper I need isn’t ever where it should be. And I’m not that good with numbers. Even at school, where I got good grades in maths and even did A-level physics, I wasn’t intuitively good with numbers the way some of my geeky friends were. Maths was always a second language I could translate into in my head, but not intuitively think in.
Doing things like this just leaves me confused as I go from document to document. I have to keep reminding myself which tax year I’m doing this for, otherwise I’ll forget and enter the wrong data. Just to confuse myself further, midway through the last tax year, I switched from being a freelance contractor to a permanent staff member, although still doing the same job in the same institution.
I just feel incompetent these days. At school, I was a high achiever, academically (socially was another story), but I think I survived by putting myself in a protective bubble for fourteen years, memorising vast amounts of data and filtering out the real world (noise, smells, social interactions, bullies, eventually even out-of-school-activities and almost everything other than work in the end). My good memory for trivia stood me in good stead in exams, but after that, I had to go into university and then into the world, and suddenly critical thinking skills, analytical skills, problem-solving skills, flexibility and creativity were all more important than just being able to remember lots of facts or even remembering other people’s arguments.
I have two degrees, but I work two days a week in a low-skill job which I am over-qualified for, but in which I still regularly make big mistakes. The mistakes are probably partly out of boredom, but also from having to work on multiple documents at once or just my inability to remember things nowadays. My mistakes fuel my low self-esteem, which in turn probably causes more mistakes as I assume I will fail. I feel like somewhere along the line, after years of autistic burnout and mental illness, I just got stupid and I don’t know how to destupidify myself. Sadly, I think anecdotal evidence indicates that prolonged autistic burnout, and prolonged bouts of mental illness, can both lead to a decline in cognitive ability. It now looks like I have a sleep disorder too, so I can throw sleep deprivation into the mix too.
***
Liz Truss is the new Prime Minister. I don’t really have any thoughts about this, except that it cements my feeling that I can’t vote for any current political party. I think I dreamt about Gladstone last night, although I don’t remember the details. I do feel the world in general has a terrible crisis of leadership at the moment, although realistically great leaders only come around every quarter-century or so.
Feeling Super-Autistic (and Not in a Good Way)
I’m worried about E as she’s testing negative for COVID now, but still struggles to breathe sometimes and feels tired all the time. It’s frustrating being in another country at this time. I’m glad I’ll be with her in a few days. We both really hope she doesn’t have long COVID.
I woke up feeling really exhausted after yesterday. I did quite a lot yesterday, work, then transport issues on the way home, then I had my first professional haircut in two and a half years, which reminded me how much I find haircuts an intrusion of my personal space, and I was worried about E. Today I woke up very late, struggled to get up, then went back to bed after breakfast as I felt so shattered, physically and emotionally. I was glad that it was cool enough to use my weighted blanket again, but maybe it was too tempting after a long break with just a duvet cover or no covering at all. Staying in bed, wrapped in my blanket, is classic shutdown, exhaustion-recovery behaviour for me.
I got confused about which days I was taking as holiday. I’d asked to have from this coming Tuesday onwards, but thought I’d said from Monday (which might have been more sensible, although I’m still doing an odd Thursday on 1 September). J gave me the time, but I feel stupid (I arguably should have stuck with working on Monday, but it’s too late now). I know it’s arguably another executive function thing that autistic people are bad at, but I was fine at being organised and prepared at school (it was some of my friends who struggled), but somehow I just can’t do it any more. I don’t know if there’s something about the workplace rather than school that makes it harder (the fact that I’ve internalised the message that I can’t work effectively here, perhaps) or if, as sometimes happens, I was able to mask and use workarounds (such as writing reminders) at school, but now I’ve reached a point where I can’t even do that any more without exhausting myself. You can’t get “more autistic” as you get older, but you can suddenly stop being able to mask and “conform” to neurotypical standards. It’s just another thing that makes me feel I’m just not cut out for this world, the “adult” world of work. It doesn’t help much to know “We would expect someone like you to struggle with X” if it still means that you struggle with X, particularly if you struggle a lot more with just X.
Incidentally, there’s some talk today on the autism forum about the longer you try to mask, the worse your burnout is when it comes, and the harder it is to come back from it. That’s probably true, and I burnt out about age twenty, not in my thirties or forties like some of the people there. I still haven’t managed to get back on track after my burnout, and now I wonder what ‘on track’ would look like. Autism is definitely a marathon, not a sprint.
I’m not going to shul (synagogue) today. I was not sure whether to risk picking up COVID (or any other illness) right before my trip, but now I just feel exhausted and unable to cope. I don’t know why, but autistic exhaustion often feels like low blood sugar or even low blood pressure for me, faint and light-headed. I don’t know if this is an alexithymia thing, with my body being confused about what I’m actually feeling or if there are actual physical effects in this way.
It’s mostly the thought of E and our imminent wedding (Phase 1) that is keeping me going. Even if most of my life is a mess, I did at least get an amazing fiancée! I just hope I can find a way to earn more money and get more energy (which might not entirely be an autism thing, as a sleep disorder seems increasingly probable) before we get married, or at least soon after. Although from our on/off relationship history I know that she’s decided that she wants to be with me regardless of how much I earn or what I can do, it would be good not to be struggling, financially and practically, especially if we have a child.
Leaps Into the Unknown
There’s not a lot to report today. I woke up an hour early and couldn’t get back to sleep. I decided to rest in bed rather than get up early. Work was OK. I was supposed to photocopy pairs of sheets of paper onto single, double-sided pages, and I kept doing it wrong, starting to copy the same page on both sides instead one on each side. I stopped the printer in time each time, but I felt stupid the first time I did and stupider the second time.
There were Tube problems (a stretch of the Northern Line closed because of someone on the line, unfortunately) which necessitated me going on the other branch of the Northern Line and then getting a bus. I did eventually get to the barber. I was somewhat scared by the fact that, of the two people already there, one was having his head shaved and one was having some weird treatment involving waxing his eyebrows and nasal hair or something. I didn’t think it was that kind of a barber! I was worried the barber would want to do more than just trim my hair! In the event, it was OK. I shook slightly, but not much, and the barber either didn’t notice or was too polite to mention it. I sent E a selfie when I got out and she liked it, which was a bit of a relief.
***
I’ve nearly finished Eleanor Oliphant is Completely Fine. I read a big chunk today, at lunch and on my extra-long journey home. I’ve got about seventy pages left. I have enjoyed it, but I felt Eleanor’s naivety was too inconsistent. I thought that early on, she didn’t have a TV in her flat, but then suddenly she did. Perhaps that was my mistake, but the types of things she knew and did not know seemed to vary according to the jokes the author, Gail Honeyman wanted to tell. She knew about Power Rangers but not about Spongebob Squarepants and so on.
Honeyman has apparently said that Eleanor is not autistic, but she sometimes comes across as autistic. This led to a strange situation where I empathised with some of her thoughts and actions as things I might have done, but was alienated by others. I should say that I don’t intend this as a criticism. Unfortunately, representation, being “seen” or “erased” by a work of literature or art, has become a key criterion of its worth or success, and I don’t think it is, really. But it did feel strange to strongly connect with Eleanor’s struggles one minute and then feel totally astounded by them a moment later.
What I did find interesting was my reaction to the scenes of Eleanor’s breakdown and therapy (actually, it was called “counselling,” but the counsellor had a PhD, which to me implies therapy). It made me feel strangely nostalgic for my worse days. I don’t mean nostalgic in the sense of wanting to be like that again (I was more or less completely non-functional for several years, doing nothing other than go to meetings with my psychiatrist(s) and therapist(s), when I was able to get one), but it seemed somehow easier.
In those days I had no real responsibilities. Unlike many people with mental illness, I had no real risks, aside from suicide, because my parents were supporting me financially and I lived with them. At some times, at least, I felt I was constantly making new discoveries about myself and my history in therapy, which was exciting and, over time, changed how I saw myself. I would not want to go back to that world at all, but I guess it brought home to me that my current life is a leap into the unknown: marriage, writing and various other things I haven’t even started on yet. I hope they will turn out well, but I have no idea if they will. It scares me sometimes that we can’t see one minute into the future. Anything could happen. It does seem strange looking back from where I am now: I’ve come so far, yet I feel I still have so far to go. At least now I will be going there with E.
Existential Spirituality
I wonder sometimes about my spiritual life. I feel I have more of a religious life than a spiritual one. I would like to have a more spiritual life, but it’s hard to know where to start, especially from inside a major religion — where do you go when you’re already where you’re supposed to be, and don’t want to leave, but aren’t fully fulfilled? I want more spirituality, not less Judaism. Further, I find ‘spirituality’ a vague and unhelpful term, and Hebrew words like ruchniut aren’t any better.
I used to read a lot of Jewish religious existentialists (not all Orthodox). I found Jewish existentialism an approach that resonated with me more than many approaches in the Orthodox world, so out of curiosity, I searched online for stuff on existentialist spirituality, despite knowing that secular existentialism is very different to religious existentialism.
I found an article on existential spirituality in psychotherapy the other day that says the following:
There are four primary existential ways of being-in-the-world. They include:
- Umwelt: Being-with-nature or the physical world.
- Mitwelt: Being-with-others or the social world.
- Eigenwelt: Being-with-oneself or the world of the self.
- Uberwelt: Being-with-the-spiritual or over world.
Boss (1963), Binswanger (1963), and May et al. (1958) described the first three of these existential ways of being. van Deurzen (1988) added the fourth.
I do struggle with several of these areas. I’m able to experience nature well when I’m in a natural setting, but I struggle to find one in the suburbs. It might be good for me to walk more often in a little area of land left wild at the edge of the nearby park (although it only takes five or ten minutes to walk the length of it).
Skipping number two for the moment, I am a lot more OK at being with myself than before. I still have low self-esteem, something worsened by autism-induced mishaps, and some social anxiety and catastrophising, but I’m mostly comfortable being inside my head. I feel positive about my sense of integrity, which ties into my Jewish practice as I practise Judaism less to feel “positive” or “spiritual” in the moment and more because overall I have a feeling of integrity and rightness from acting in accordance with my religious beliefs and as part of a three thousand year old community.
The really hard areas are two and four. I think being with others is very important (this is perhaps the biggest thing I take from Jewish existentialism), and it does help me when I find a way I can interact with others well, but finding that way can be hard. I definitely missed volunteering the last couple of weeks when it was on a break and I felt depressed until it restarted yesterday. The downside is that I feel depressed and burnt out today, which may be cause and effect or may be coincidence.
The fact that I go to shul (synagogue) a lot less than I did seven or eight years ago is probably a negative here too, from a social point of view as much as anything. Communal prayer does create social bonds. In recent years I have gone to shul a lot less, as a result of sleep disruption, social anxiety, changing communities and then COVID. I’m now totally out of the habit of regular shul attendance and struggling to get back into it.
I think my marriage to E might be the biggest positive change I can make here. Following the Talmud, I see marriage as the primary model of a loving relationship (the Talmud sees “Love your neighbour as yourself” applying particularly to marriage) and I think the intimacy (emotional as well as physical) there will help me feel more spiritually-fulfilled. I think already our emotional intimacy has led me to feel better in this way. It is hard at the moment, though, when we are so far apart and know it will be so long until we get married. E said it feels like we should be married now and our current status is a weird aberration, and I agree with her. E also thinks that God wants us to marry so I can help her be more religious and so she can help me to have more fun, which may be true too.
Connecting with God directly is harder. I struggle to connect with God through Torah study, except on occasions when I suddenly gain some new insight. That doesn’t happen often, but maybe I have to do a lot of study to provide “scaffolding” for those moments of connection. But often it’s easy to forget God while studying Torah and just focus on the text as a text. Possibly I should try to get back to reading something inspirational or about personal growth every day.
I have improved my kavannah (mindfulness) in prayer lately, but even then it can be hard to concentrate on God. I can focus on God or on the words of the prayer, but it’s hard to focus on both at once.
I guess a lot of the problem is the subjectivity of what constitutes a spiritual experience or a connection with an invisible God. Maybe I’m trying to over-analyse.
***
I got a phone call from A, the person who seems to be a middleman between me and the psychiatrist. He turned out to be a psychiatric nurse. He said that before my medication was reviewed by the psychiatrist with a view to reducing it, could I tell him what happened about the autism assessment I was referred for in 2019, as they had no further information. I was pretty shocked he didn’t know about my diagnosis. In fact, I don’t think he even knew I was referred for an autism assessment, as he thought it might have been for ADHD (the hospital assesses for both). I offered to scan the report and send it to them, which was fortunate as he said he could write to the GP, but that would take weeks (!). You would think that an advantage of a single, national healthcare provider would be some kind of shared data base, at least within the locality. Honestly, this service is just so useless.
***
I was going to go for a pre-wedding haircut after this, but it started raining really heavily and I decided to go after work tomorrow instead. It’s still quite hot and I think the rain and heat/humidity combination along with the disruption to my plans brought my mood down. I am nervous of having my hair cut by a stranger again. I’ve always found haircuts intrusive, probably for autistic reasons about personal space and sensory stimuli, but for many years now I’ve had tremor in some social situations and haircuts are a major trigger, indeed, they were the first trigger when it started. I hope it doesn’t happen tomorrow.
I forgot to go to shul (I want to go on Wednesday evenings), although I wouldn’t really have had much time to spare. Instead, I submitted my first novel to two more agents, both UK-based. I’m trying to focus on UK agents at the moment. One is Jewish, but is super-influential and well-connected, so I probably won’t be accepted by him. To be honest, I suspect all the agencies on the list I’m using are too big for me and that I need some small boutique agency. E disagrees with me here; I hope she’s right.
***
I got sent £3.34 from Lulu.com, which means someone bought my non-fiction Doctor Who book!
Perchance to Dream
This is mostly about a weird dream I had last night. I know some people don’t like to read about dreams, so I usually don’t post about them (I don’t usually remember them, to be honest), but this one seems pertinent to the theme of this blog, such as it is, of trying to fit in at work and in the Jewish community with autism and social anxiety. I’ll put the dream in the next paragraph and the relevance in the ones after, if you want to skip. I’m cutting a lot of weird detail that I can barely remember and isn’t relevant (this isn’t Freudian psychoanalysis). To be honest, I’m reconstructing the dream from fragments, as I can’t remember everything (my dreams are fairly stream-of-consciousness and I usually can’t remember much of them). I’m also cutting the random Donald Trump cameo (seriously, he just walked in and walked out again).
In the dream I was travelling with my boss, J. We were at someone’s house for Friday night dinner, and I said I wanted to leave early as I was tired. In reality, I had autistic burnout. J said we were going to lunch somewhere after shul (synagogue) in the morning, and he wanted me there on time as he didn’t like making excuses for me. I felt that I wasn’t really able to control my sleep pattern and autistic exhaustion, but I didn’t say anything. I went back to where we were staying (which was a sort of self-storage center where we had to sleep in drawers of filing cabinet-type things), but I got lost getting out of some sort of factory place, so when J came to check on me, I wasn’t in bed yet and he got annoyed as he said I would get up too late now. I didn’t tell him I’d got lost as I thought it would just start an argument. I also felt some guilt, as I felt I had wasted some time myself through procrastinating, although it wasn’t clear how this had happened. I somehow knew that I would not be able to get up in time in the morning and J would have to go without me and make excuses for me. I knew this was due to my autism, that I would crash and oversleep and that I would need to do so, but somehow it did not feel a good enough excuse. I spoke to my parents and sister and said that J didn’t understand my autism and I didn’t know how to explain it to him. There was then a load of stuff about not being able to sleep because of too much light and noise, again because of autism (and also failing to sleep in a filing cabinet drawer, which somehow didn’t seem weird) and talking to various people, but this was the relevant part of the dream.
It seems pretty clear this is about my autism and my disrupted sleep and my lack of shul attendance over the years. Obviously in the dream I felt I wouldn’t make an early start as I’d already had a couple of early starts on the trip and I would be suffering autistic exhaustion; further, I struggle with sleep and getting up as it is, for reasons that are still to be determined, but might be some kind of sleep disorder. J is easy-going in real life, but in the dream he was really annoyed with me, which probably reflects my fears that I am going to exhaust his patience in the workplace with my mistakes, mistakes that may be due to autistic issues like executive function deficits and trouble multitasking, or might just be due to boredom and incompetence. Somehow (I can’t quite remember how), my boss from my job at the further education library was in there too; she was less accepting of my mistakes in real-life and told me at my annual evaluation I was frankly not turning out as well as she had expected, which largely soured me on pursuing a library career. To be fair, I didn’t have an autism diagnosis at that point; even so, I feel I’ve made a lot of mistakes in both jobs, beyond my diagnosis. Of course, the worry in the dream was about getting up for shul. My disrupted sleep may be autism-related or may not, I don’t know at this stage. It’s led me to have very poor shul attendance over the years I’ve been struggling with mental illness and autism (really back to teenage years). I worry that I “Should” be going to shul more, and doing more generally to be a “good Jew.”
At the root of all this is the fear that I am asking for huge amounts of adjustments from J, from my parents, and from E, and, in a sense, from my community and God and that one day they will get fed up with making them. I have asked for adjustments for mental illness and I’m still asking for adjustments for autism and disrupted sleep, as well as feeling slightly incompetent generally and prone to procrastination instead of doing things well first time, which may or may not be a side-effect of autism. I am getting reduced shul fees because I’m on a low income. I’m not doing the things a frum Jewish man should do and which God apparently wants me to do, in terms of shul attendance, Torah study and mitzvah performance. There is a fear that I don’t deserve these adjustments, that I’m taking advantage of my parents, E, my community and God, and that one day they will realise.
In reality, I’m making adjustments in return for E, which she is aware of, and arguably also for my parents, who are not really aware of it. Still, there is a feeling of being a thirty-nine year old child, still not fully functional and independent. To be honest, I feel Western society puts too much emphasis on independence. It’s nice if you have it, but many people will not have it for at least some of their lives and that’s not a fault or a problem. Still, I think these are pretty deep-seated fears coming out in the dream.
***
I did a bit more today than yesterday, but I feel that I’m still being subpar. Part of that is sleeping late, of course. Now there’s a big garden party going on somewhere nearby. I hope it doesn’t keep me up late. It’s not looking good on that score, and I feel I’m going to have to shut the windows when I should really keep them open.
***
I had a weird thought last night. People say that no one is a supporting character in their own life, but I kind of feel that I am a supporting character in my life. That’s why huge chunks of my life have been ignored (career; friends; aspects of religious life; until recently, love life) — the author hasn’t thought them out! It’s like Rosencrantz and Guildenstern are Dead, I’m a main character in my play, but really a minor character in a much more important play.
Of course, this isn’t fully true. My inner monologue is loud enough and important enough to me to make me feel a lot more real than anyone else. Still, I do feel like I’m not really here in the same way that other people are. I don’t achieve anything, I’m like a ghost or a neutrino that passes through without changing anything, at least until E and I got together.
On another level, it is true, of course. I’m a main character in my life, but a minor character in, say, the story of the Jewish people or England or humanity . I guess it’s hard to think of oneself as unimportant, as I’ve said before. It’s not that I want to be important in itself or for fame (yuk), but to feel I haven’t wasted my life and made some kind of difference. I’m trying to teach myself not to care.
***
OK, I really wish the party would stop now. It’s VERY loud and late.
The Elevator Pitch
The important bit: E booked an appointment for us to get a wedding licence when I’m in New York. We can’t book the civil wedding itself until next week, as they only release the slots three weeks in advance. But we’re another step closer to marriage!
***
I couldn’t sleep last night. I don’t know why. I often find it hard to sleep after a headache and it was hot again too. I got about two hours sleep in the end and somehow got up in time for work. I drank a lot of coffee… I’m not sure if that’s the reason I made some mistakes at work. To be honest, I don’t really need sleep deprivation as an excuse. Some of it is executive function issues. Some of it might be incompetence. Or maybe not. I don’t really know any more.
I had to do a rotten job at work too which I won’t go into here, but it involved the phone, asking people for money they owed and some other stressful stuff, but it left me feeling lousy and still not getting the money we were owed.
When I got home I did some small chores, thinking I would submit my novel to an agent after dinner, but by the time dinner came (my parents eat late), I was burnt out and light-headed from lack of food and still felt bad after eating.
I feel like eating junk (rogelach or cake), but really shouldn’t as I had too much over the last couple of days. I might use the autistic exhaustion heter (dispensation) to listen to music despite the Three Weeks of mourning, as I feel pretty bad, but don’t think I should go to bed just yet.
***
I was thinking again last night, when I couldn’t sleep, about people I know/knew who get paid to write, or who write for a wide audience (paid or free). I felt despairing that I would ever get there, although the number of people I could think of being paid to write wasn’t that great, and I think they’re mainly making money from their substack email newsletters. Feeling a failure at work and even wondering today if I would get fired didn’t help. J is pretty easygoing, but I imagine he doesn’t have infinite patience. There is definitely a trend on the autism forum for people to fail to hold jobs down for long, although they tend to blame the social aspects of work rather than executive function issues.
Instead of feeling like an inadequate, failed writer, I tried to focus on my life and what I have, especially E. I remember when I was single and lonely for so many years and now have someone who loves me more than I ever thought possible. But I would like to be able to contribute more to the family. I am sufficiently ‘modern’ to be OK being the lower earning partner and being a house husband, but I would like our life not to involve money being very tight, or relying on our parents.
***
I went to the free book box on the way home, partly because it was such a stressful day, and I ended up over-compensating. I took three books: Doctor Who: The Time Lord Victorious: The Knight, The Fool and the Dead by Steve Cole; The Suspicions of Mr Whicher by Kate Summerscale; and Eleanor Oliphant is Completely Fine by Gail Honeyman.
I don’t really read Doctor Who books any more, but I couldn’t not take a free one. Eleanor Oliphant is one of those books I’ve been meaning to read, but never got around to, and is probably the sort of literary/commercial novel that I should be reading to understand the field. That probably applies to The Suspicions of Mr Whicher too, although it’s more of a stretch in terms of genre (historical fiction, murder mystery, fiction-based-on-fact).
***
I’m still on the front page of the Jewish website with my autism/Asperger’s story. I noticed today that they put a note on it about winning the award, which I guess is why it’s still up there. It did occur to me to wonder if I should email Rabbi Kahn from the Orthodox Conundrum podcast to suggest he does a neurodiversity episode or a high-functioning autism/Asperger’s episode. But I’m a bit scared in case he asks me to be on it. Then again, it’s not likely that he would ask some random stranger onto his podcast. Usually the people he interviews are experts or activists of some kind, often rabbis. Anyway, I wrote a sort of fan letter, saying I like the podcast and asking him to do an episode on Asperger’s/high functioning autism, but I think it came across as “LET ME BE ON YOUR PODCAST!!!!”
I suppose I would like to be able to talk in a more honest way than I was in the article I wrote. Not that I was dishonest, but I had to omit and compress a lot to get it down to a thousand words, and I did the thing I complained about yesterday of making my life seem linear and positive when it isn’t always those things. Podcasts – conversation – are not going to be great for any autistic people, though. We tend to freeze when forced to answer quickly, and are not always good at social niceties (my old friend executive function issues again). Anyway, it probably won’t happen.
***
It is very hot again and I don’t like it.
Sleep Apnoea, Reframing, The Three Weeks, and Podcasts
The last few days have been fairly quiet, just the usual mix of work, Torah study, novel writing and novel submitting, as well as Shabbat (the Sabbath). I woke up in the middle of the night last night panting and short of breath. I was somehow sufficiently alert to realise I was lying on my chest (I go to sleep on my side), so that’s all more evidence in favour of my having sleep apnoea, which tends to be worst when lying either face down or face up. I must have moved in my sleep. No idea when I’ll get to see a specialist to investigate it. I’d like some kind of answer about what my sleep/getting up problems are all about so I could try to work on them. I do need longer days if I want to earn more money, and I would like to be able to go to shul (synagogue) on Shabbat mornings again, both for religious and social reasons. I slept for several hours this afternoon, but tried to tell myself it was understandable if my sleep last night was poor.
I went to my parents’ shul for Minchah (Afternoon Prayers) today. Someone from my shul (which I haven’t been to since it moved out of its regular premises into cramped temporary premises) sat in front of me, which disrupted my concentration for the whole service, as I was worried he would speak to me about why I stopped going to my shul. In the end he left early without speaking to me at all, so that was wasted worrying.
I had a weird Viktor Frankl/Man’s Search for Meaning reframing moment. I’ve felt frustrated for years about losing more than twenty years of my life to mental illness and/or autistic burnout, and during the supposedly “best years of my life” of adolescence and early adulthood too. Perhaps because the Torah reading lately has been about the end of the Israelites’ forty year sojourn in the wilderness, I found myself thinking, “It was only twenty years I lost. It could have been worse. It could have been forty.” I find it weirdly comforting. I’m not sure if this is rational or not.
We’re two-thirds of the way through the Three Weeks, the Jewish national mourning period in the summer when we mourn the loss of the Temple in Jerusalem. I find it a difficult time. My beard (a sign of mourning) itches, it’s frustrating that I can’t listen to music unless exercising and the Fast of Av at the end is an intimidating day to get through. I have only felt autistically exhausted enough that I needed to listen to music once, though, which is good (there is a heter (permission) for people with depression to listen to music which my rabbi mentor said could apply to my autistic exhaustion).
Because I’m not listening to music, I have been binge listening (if that’s a thing) to the back catalogue of Orthodox Conundrum podcasts. Many of the podcasts have provoked thought, although I don’t always get the chance to record my thoughts, especially as I tend to listen when I’m walking to or from the station. Here are some thoughts on a couple of them.
Rabbi Lopes Cardozo was talking about his latest book (at the time of the podcast, a couple of years ago). He argued that mitzvot (commandments) are supposed to instil “radical amazement” (I recognised this a term from Rabbi Abraham Joshua Heschel). Since I listened to this podcast, I have been trying to feel that amazement when saying blessings on food and the like, which is one of the main religious actions I do during the day, certainly in terms of frequency and it has been quite positive so far.
He also said that he believes in God, but doesn’t know what “God” means. This reminded me of the negative theology of Medieval Rationalist thinkers like Rambam (Maimonides) and Rav Saadia Gaon. The idea is that God is beyond understanding and description, so we can’t say what God is, only what God is not (e.g. “God is not weak” rather than “God is powerful”). This approached has been debunked by various people (Rabbi Eliezer Berkovits and Rabbi Samuel Lebens just from my bookshelf), but Rabbi Lebens argues that even if it’s not literally true, it’s a useful reminder of the limits of human knowledge.
Shira Lankin Sheps of The Layers Project Magazine was talking about how The Layers Project Magazine tells the stories of religious Jewish women who are otherwise ignored by the mainstream media (because it’s not interested in religious people) and the Orthodox Jewish media (which is not interested in women). She said that the Orthodox community is often governed by shame, where people think their negative experiences are unique and therefore shameful, but in fact they are often normal. The Layers Project Magazine aims to normalise those stories.
I think this is positive, but I felt that when she presented her own story, of struggling with an unknown chronic illness, it seemed very swift. She said she wrote one post about her illness and suddenly she was getting so many positive responses and support from other people. Then she wrote another post when her grandmother died and from that a doctor who read it identified her illness. It’s the kind of thing that makes me doubt myself, because, as I said above, it’s taken me twenty years to get to this point and I’m still not sure I’ll get exactly where I want to be. I never had that kind of miraculous quick fix. It reminded me of Hevria, where it seemed OK to have had an illness or trauma in the past, but not to be struggling with one on an ongoing basis. I haven’t really read the website, so I don’t know how those stories are framed.
(The only thing I could find on the site on high-functioning autism/Asperger’s was the beginning of this post covering several different women’s stories. It’s a shame, as autism in women is even less understood and accepted than autism in men.)
“Why were you not Luftmentsch?”
I was somewhat late for volunteering today, partly because I overslept, partly because there were no buses. To be fair, the two other people who get the same bus were similarly late. I hung around to drink coffee with the other volunteers afterwards. I tried to speak. I find it hard. There are some things I don’t really want to talk about, and other things where I can’t work out whether I should talk about them or not. There are some questions that I would naturally answer with a yes/no answer, but I have learnt that allistics (non-autistics) often prefer an explanation or elaboration, so I try to give that where it doesn’t seem too intrusive. Believe it or not, I’m a private person away from my blog.
I did mention that I’m engaged and having my civil wedding soon. I’d been wondering whether to say something, then I had the opportunity to drop it into the conversation casually, so I did. Everyone was pleased for me, although I had to explain the immigration/two weddings situation.
More difficult to handle was when I was asked if I would join everyone at a non-kosher restaurant for lunch next week (there is no actual volunteering next week). I was not comfortable doing that, although I was pleased to be asked. But I find these situations awkward, as I don’t want to appear holier-than-thou. To be honest, part of me was glad, as if it was at a kosher restaurant, I would feel obliged to go and I’m not sure I’m ready for that level of social contact with these people yet. But I know E would be inclined to go in this situation and it does make me wonder how we will deal with our different kashrut-based socialising decisions. It can be a bit of a minefield at the best of times.
I volunteer putting together the food packages at the food bank, and then other volunteers come to distribute them in their cars. One of those drivers was wearing a kippah like the one I was wearing. These were produced uniquely for my sister and brother-in-law’s wedding guests, so it would seem he was there (I guess as a guest on my brother-in-law’s side as I didn’t know him, most likely a relative or close friend of my BIL’s parents). I didn’t have the confidence to ask him about it. My Dad has actually had at least one conversation with a stranger started by the shared wedding kippah connection and I felt that my Dad would want me to ask him, but I didn’t have the confidence.
In the afternoon I spent some time on my novel. I spent about an hour on it, not as much as I would have liked, but I wrote over 500 words, and it was a difficult passage (not yet finished), about my characters’ reactions in an art gallery. Art is not a subject I know a lot about, so it is a learning curve. I think this chapter will take some time
I submitted my first novel to another agent. I had to pick one from a bunch of agents at the agency. They did have them tagged by genre, which made it easier, although I’m not sure what I feel about ‘mental illness’ and ‘neurodivergent’ apparently being considered genres now, useful though that is to me, given my novel’s subject matter. I feel vaguely bad that I discounted one agent for having two typos on her profile page, although it then turned out that she’s not currently looking for new writers anyway (phew, no guilt!). I did find another one to submit to.
***
I saw a blog post yesterday about not having a victim mentality. Then today I was in a discussion about the same subject. I probably do have something of a victim mentality when I look back at my earlier life, in particular the bullying and the years lost to depression/autistic burnout. I’m finding it hard to learn to accept my life without letting the negative parts of it define me, and not to see it as leaving me with something to prove or a need to redeem my life. It’s possible that I still haven’t processed the fact that I’ve discovered that I’m disabled and have been all my life, or at least that I haven’t processed it as much as I thought I had.
Today I was thinking (for unrelated reasons) about wanting to be myself, about the famous story about the eighteenth century Hasidic master Zusia of Hanipol. On his deathbed, he said he was scared. His Hasidim asked why. He said, “I’m not scared that they will say [in the afterlife], ‘Why were you not Avraham (Abraham)?’ because I am not Avraham. I’m not scared they will say, ‘Why were you not Moshe (Moses)?’ because I am not Moshe. I’m scared they will say, ‘Zusia, why were you not Zusia?’”
It is scary to think of going through life trying to be someone else and I have no idea if I’m doing that. I was thinking yesterday that I wished I was more spontaneous and confident enough to say and do things in an off-the-cuff way. Then I asked myself if I really wished I could do that or if I just had an image in my head that being spontaneous is a good thing to be and that I’m not spontaneous and don’t need to be.
Protected: “For O, for O, the hobby-horse is forgot”
Emotional Vampire
Sorry, WordPress has eaten this post again, and I don’t have time to fix the
probable formatting problems of salvaging it.
Yesterday I overslept, the beginning of a day marked with incipient signs of
autistic exhaustion. I skipped even more of Shacharit (Morning
Prayers) than I usually do and wondered when I would get to see someone about
my sleep issues.
Work was pretty dull. In the morning I was mostly locating and copying
dividend statements for the auditors without really understanding the financial
reports I was searching through. I hope I found everything I needed. The
afternoon was spent sorting through old papers to see what could be thrown
away. I found letters from the then Chief Rabbi and his successor, and two
letters from fathers of schoolfriends of mine (both Reform rabbis).
On way home I felt burnt out. I had the “brain being squashed”
feeling again. Apparently volunteering + headache + work + peopling + work
again + heatwave = autistic exhaustion very quickly. I was exhausted at home. I
spent half an hour or so doing non-screen time reading, which helped a bit even
if the subject matter was heavy (The Third Reich in Power).
After dinner, I submitted my novel to two agents in the space of twenty or
thirty minutes. I’m getting quicker as I’m getting more experienced, although
that hasn’t led to more interest, just more rejections.
I spoke to E afterwards, but eventually I crashed. I can’t remember when I
went to bed exactly, but I must have slept for over twelve hours, despite
setting alarms and Dad trying to get me up. I feel tired and numb now, but more
functional, and my brain doesn’t feel like it’s being squeezed. It is hard to
do anything, though. I went for a walk, even though that meant I couldn’t work
on my novel today (and I probably won’t on Sunday either, as I’m busy). I
wanted to be out in nature, which is impossible where I live, but there’s a
little strip of wasteland and woodland at the edge of the local park, so I went
walking there. I listened to an Intimate Judaism podcast about sex and
guilt, which did make me feel like I was, on some level, thinking about my
novel, doing Torah study and getting out to look after my physical and
emotional health, at least on some level. Aside from writing this post, the
only other thing I’ve done today is my usual pre-Shabbat chores.
I feel a need to move on with my life, particularly with marrying E and with
my writing. Marrying E is moving on OK at the moment, even if it’s frustrating
that bureaucracy is going to make it a prolonged process, but I want to move
faster with my novel. It’s partly feeling I have something to say, and that my
subject matter is going to be taken by other writers if I don’t write quickly.
But some of it is feeling “I need to earn money as a writer to help
support the family when E and I marry.” Days like today, when I just feel
overwhelmed and unable to do much, are a reminder that I have a disability and
that my life is not where I want it to be, will not be there for a while
longer, and it may never be there, which is frustrating and scary.
That said, I have kind of reached a point lately where, at least some of the
time, I feel less resentful of having lost half my life to depression/autistic
burnout/whatever it was. I don’t look positively at those times, but I feel I
needed to go through something like that if I want to write about people on the
margins of the frum (religious Jewish) world, and I feel I wasn’t
ready to get married then, despite being painfully lonely and not having any
real legitimate option in the frum world for dealing with loneliness
and sexual frustration. I have a lot more maturity, understanding of myself,
and ability to give in a relationship than I had even a couple of years ago. I
feel less resentful of God for putting me through all this. Of course, if I
believe in an omnipotent God, then I have to believe He could have achieved all
this a less painful way, and I do struggle to consciously accept that this was
the best way to achieve these goals, especially when so many other
people reach this stage without similar levels of pain. Ultimately, I think
everyone suffers, sooner or later (except perhaps some exceptionally wicked
people who God lets enjoy this world so they won’t experience the next one),
and it’s pointless to complain who suffers more or less. It’s hard sometimes,
but the alternative is basically self-defeating.
***
I had another couple of books arrive over the last two days. They were
ostensibly bought for research for my novel, but I’m not sure how helpful they
will actually be. Really, I was curious about them, but needed to justify
reading them to myself. The books are The Pornography Industry: What
Everyone Needs to Know by Shira Tarrant and When Rabbis Abuse: Power,
Gender and Status in the Dynamics of Sexual Abuse by Elana Sztokman.
For some time now I’ve been reading On Repentance, a collection of shiurim
(religious lectures) given by Rabbi Joseph Soloveitchik before Rosh
Hashanah and Yom Kippur (New Year and Day of Atonement), and
reconstructed from notes by Rabbi Pinchas Peli. I’ve been struggling in places,
not because of the text, but because it’s hard to know what to do with the
optimistic view of a forgiving God when I’m aware that there are people, often
very prominent people, in the frum community who are abusive and others
who defend and protect them, and I don’t feel these people should be forgiven.
I worry how the community as a whole will achieve forgiveness for allowing this
situation to exist.
I think about this sometimes when davening (praying), but it really
crystallised around the idea of Rosh Hashanah and Yom Kippur,
after listening to Haredi activist Yehudis Fletcher describe her abuse
by Todros Grynhaus, a rabbi and schoolteacher, and how, at a time when she was
trying to make the community aware of the danger he posed, she was marginalised
while he was asked to lead the prayer services on Rosh Hashanah and Yom
Kippur in a shul (synagogue) despite the allegations she had made
against him.
I do worry why I’ve got so interested in abuse, and writing about abuse. I
was never abused (I was bullied a lot at school, but it was largely
name-calling and not anything physical. I don’t know if it would be considered
emotional abuse). I have known survivors, and abusers, but I think it’s more
the experience of marginalisation that I empathise with, albeit for different
reasons (autism and mental illness) and want to do something about. But I worry
that I become a kind of emotional vampire, sucking up other people’s sorrow for
benefit.
Protected: Coping Strategies (NSFW)
The Love Song of J. Alfred Luftmentsch
I didn’t really want to blog after the longest Shabbat of the year, but I had a pretty awful time and need to offload, so here goes. I had one of those days of autistic burnout that basically feel like depression, with no energy, low mood, and agitated and perhaps somewhat obsessive thoughts. I’ll go through what happened and then some of the thoughts.
I didn’t go to shul (synagogue) last night. I was just too physically drained to manage it. I had a lot of agitated thoughts all evening, including at dinner with my parents, which was uncomfortable and made it hard to concentrate. After dinner, I did Torah study for about forty minutes, reading two difficult chapters of Yehoshua (Joshua) listing Levitical cities, and the commentary on them in Rabbi Hattin’s commentary book. I am now through all the chapters that just the tribal boundaries in ancient Israel, which is a relief. Afterwards I was not sleepy and wanted to read something lighter than the book of contemporary Israeli writing that I’m sort of reading (where contemporary is circa 1973 as it’s an old, second-hand book), so decided on James Bond (On Her Majesty’s Secret Service), which might not have been the best choice as the idea of dying as soon as you get married, or just before, ended up haunting my thoughts. I got to bed around 1.40am.
I woke up around 9.30am to go to the loo. I should have stayed up, but wanted the comfort of being wrapped in my weighted blanket and went back to bed, and to sleep. I got up at lunch time, which was bad. I went for a brisk walk for forty minutes after lunch, which was good (that I went), but struggled with agitated thoughts during it and afterwards. I tried to read some of The Newlywed’s Guide to Physical Intimacy (more on that below), but it left me feeling anxious and depressed. I fell asleep for a while, despite drinking coffee. I’m not sure how long I slept for, as I was lying in bed thinking agitated thoughts for a while before I fell asleep.
On waking, I davened Minchah (said Afternoon Prayers). I had missed Minchah in shul and, anyway, I felt so low when I went for a walk that I didn’t really want to go out of my comfort zone (=house) again. In the summer, Jewish tradition is to read a chapter of Pirkei Avot (the volume of Talmud that deals with ethics) at Shabbat Minchah. Rather than just reading rapidly as I usually do, I spent twenty minutes studying somewhat more carefully, and a few things hit me that I had never really noticed before which helped my mood somewhat. It would take too long for me to explain them now (it was in chapter three). After that I did some other Talmud study for twenty minutes, then read James Bond again and got seudah (the third Shabbat meal) ready. I did struggle with that, as I didn’t really feel like ‘peopling’ with my parents, but I got through it, declined to play Scrabble afterwards and spent the remaining hour and a half of Shabbat reading Bond again and fighting some of my thoughts, finally feeling a bit better.
As for the anxious agitated thoughts themselves, a lot proceeded from something I read from therapist Elisheva Liss about narrative therapy, that we can rewrite the story of our life to change our mood and outlook and be less envious of other people’s skills and success. This appealed to me for several reasons. As a writer, this approach seemed more intuitive to me than other approaches such as CBT (for example). I had already noted that getting diagnosed with high functioning autism ended twenty years of depression by telling me that I am not an incompetent neurotypical who inexplicably can’t do basic things like use the phone and make small talk, but an autistic person who naturally struggles with these things.
Despite that change in outlook, recently I feel that I’ve been falling backwards, feeling myself useless especially in comparison to my (neurotypical) peers who have careers and families. I feel envious of people, envious of their happiness and their skills, not that I want to take anything from them, but to have things for myself, to have skills and a career, to marry E and for us to be OK financially, as well as to be able to have children with her and to have the energy and skills to raise them properly. Over Shabbat I felt negative about this, particularly worrying that some unforeseen obstacle will stop E and I marrying. This then bled into feelings that God hates me, that He sees me as sinful and wants to punish me, and that if things go well for me for a while, it’s just so it will hurt more when it all gets taken away from me again. I hadn’t had these thoughts for a long time, probably over a year, so it seemed like a backwards step.
Lately, I feel like I’m carrying a huge weight of the loneliness and depression that I struggled with for twenty or twenty-five years (maybe more), more than half my life. Just knowing, “Oh, I’m autistic, that’s why I struggle with work and relationships, that’s why I was bullied at school” doesn’t really feel enough any more. The suffering I endured brought me to E, but that feels like it can only be a part of the new narrative, not the entirety of it. I feel so overwhelmed by it still that I need to reshape my narrative (to use Liss’s terms) or (in more kabbalistic terms) to make a tikkun, to do something that will retroactively redeem my past and make it worthwhile, to convert the heavy weight I’m carrying into forward momentum. I hope my writing is at least a part of this, if I can help other people somehow (I’m not convinced I can help anyone, or that I will even get published, but that’s not my main concern right now).
I am thinking of buying Elisheva Liss’ book which apparently deals with narrative therapy at length. I am wary, though, as I wonder if I need to actually do something first before I can change the narrative, to create a new happy narrative. Also, I have a big stack of self-help books, most of which did not do much for me. Some were CBT books, and CBT does not work well for people on the spectrum (not that I knew that I was on the spectrum when I bought them). Beyond that, I suspect I need the accountability of a therapist to help me. I might raise some of the issues from this post with my own therapist on Wednesday and see where that takes me. (There are a couple of other self-help books I’m procrastinating about for the same reasons.)
I just feel so useless so much of the time, such a disappointment to other people, such a failure to achieve anything, and it feels like autism isn’t really enough of an excuse. I know E loves me, but I feel I should be a better husband to her, plus, as I said, when I feel down, it’s easy to get into a negative thought spiral about the United Synagogue not permitting our wedding or the Home Office rejecting her visa application.
The other train of negative thoughts[1] came from reading, or trying to read, The Newlywed’s Guide to Physical Intimacy by Jennie Rosenfeld and David S. Ribner. This is a sex manual designed for frum couples i.e. religious Jews who haven’t had sex before their wedding night. (The Hebrew title is Et Le’Ahov, which means Time to Love. That may be a better title even if it sounds like a cheap TV movie.) I bought this when E and I first dated, about four years ago. I started reading it to try to alleviate some of my anxieties about sex, but stopped reading when we broke up, as I was sceptical whether I would ever get to have sex. I didn’t dare to open it again when dating other women or even when dating E again until now. I guess I felt irrationally that it would somehow jinx things, or that God is waiting for me to get complacent enough to think that, one day, in middle age, I might actually be able to have sex, before He ruins everything for me again.
Now that, rationally, I know that E and I are probably going to get married some time in the next year, it seemed a good idea to read it, but I didn’t get far as it prompted a lot of anxious thoughts. Some of them were the “God will stop me getting married no matter what I do” type, but some were just the confusion and anxiety I get when thinking about sex generally. I guess celibacy and loneliness were a part of my life for so long that they became part of my identity. Not in a good way, but like being an orphan or having a disability.
I’m not sure where I go with this, except back to therapy. E and I did have a conversation a few days ago about sex and I do feel comfortable at the thought of having sex with her, it’s just that thinking about sex makes me feel that God will stop me, and that He wants to punish me for not being perfectly pure, and that somehow sex is just something not for me and there’s no way for me to change this.
Anyway, that’s how I’ve been for the last thirty hours or so. I actually feel OKish now. There’s some anxiety and low mood, but perhaps fewer agitated thoughts. I do mostly still feel that E and I will get married, although I’m still worried about being bowled more googlies[2] on the way. But I do want to go to bed soon, albeit after watching The Simpson to try to relax a bit, even though it’s 1.00am (this took well over an hour to write).
[1] I should probably say that the thoughts weren’t as neat and packaged as they seem here. I flipped back and forth between different thoughts throughout the day, and they did slowly develop to get to their form here.
[2] I am awful at all sports, but the one thing I can do is bowl a mean googly at cricket. Improbably, I learnt it from a book, because I’m me.
Protected: Burnt Out Again
Autistic Day
Today seems to have been an autism-focused day. I guess they all are, on some level, but this more than most.
In the morning, at work, the rabbi from my parents’ shul (synagogue) phoned the office and I answered. He didn’t recognise me, and in the past I might have pretended not to recognise him, but I identified myself to him, which I guess was a victory over social anxiety. However, afterwards I couldn’t stop thinking about this interaction, which probably took all of two minutes and had no negative aspects. It sort of “echoed” around in my head. I’ve heard other people on the spectrum describe similar experiences of mental perseveration.
In the afternoon, I mostly corrected other people’s mistakes for a change, instead of making my own. This was when I was searching for missing data on our database. A lot of it was there, just entered wrongly (typos or names from one column on the spreadsheet transposed with those in another when entered on the database). I was a bit relieved to see it’s not just me who makes mistakes. The errors date from about five years ago, so I have no idea who made them.
J was on a video call while I was doing this and I could not concentrate at all. I had to listen to music to blot out the talking. I didn’t really want to listen to music, as it was a somewhat complicated task and I only really listen to music when doing mindless tasks, but I needed to blot it out.
Then I went to Primark to return the clothes I bought last week, because I am not a size medium any more (thank you, psych meds). I was overwhelmed with the number of people in the shop, which I still can’t get used to. It took two years of lockdown and not seeing people for me to realise how difficult I find these environments. Now I wonder how I ever coped with them. It’s strange how I just coped with things, not realising how difficult I found it. The silly thing is that I feel somehow less entitled to call myself “autistic” or “struggling” than the autistic people who would have a meltdown in the shop, or just refuse to go in.
It wasn’t just the noise and crowds that was an issue. Like lots of people on the spectrum, I seem to have some proprioception issues i.e. difficulty being aware of where my body is at times and finding it hard to get out of other people’s way. I think this is partly behind the autistic phenomenon I have written here before about autistic people wanting to help with tasks, but just getting in the way of other people.
There was something on the autism forum too today about autistic brains working fast, faster than we can follow. I do feel like that at times, although not all the time. It seems to happen most when I hyperfocus on a train of thought that I like (often about Judaism or perhaps Doctor Who) or when I’m anxious and depressed about something. Certainly when autistically fatigued/exhausted/burnt out/whatever it’s called my thoughts become slow and almost physically painful.
***
In terms of consumerism, I’ve had mixed success the last few days. The Simpsons: The Complete Seventh Season DVD box set I bought second-hand on Music Magpie (second-hand DVD/CD website) turned out to be region 1, which means it won’t play on UK DVD players. I’m not sure why they were selling it, but I didn’t think to look at what region it was for when I ordered, so I can’t swear that it was advertised wrongly. I am trying to return it.
I’ve found some real bargains on Music Magpie, but also had some problems with damaged or incorrectly-sent goods. I feel I should stop using them, but the alternative is eBay, which I have used, but don’t really like, I’m not sure why. I don’t like bidding for stuff at auction, but you can get items to buy immediately. Nevertheless, I just somehow find the site awkward to use and the items often expensive. The other alternative is Amazon, but E and I are both boycotting them over their poor employee treatment and for driving small booksellers out of business as well as underpaying authors. We were boycotting them independently, before we met — a meet-boycott-cute.
The items I’ve been buying on Music Magpie are cheap (a few pounds for a CD or DVD box set), so I’m not at risk of losing much money, but complaining and returning items is a hassle, and I worry that after I’ve made a certain number of complaints they’ll assume I’m lying. They refund damaged goods priced under £5 without asking for the item to be returned, so technically someone could steal a lot of free stuff by buying cheap items and then complaining that they were damaged and asking for a refund without it ever being checked.
On the plus side, I found a copy of A Wrinkle in Time by Madeleine L’Engle in the free book box, one of those books I’ve always meant to read, but never have.
***
E and I have been watching the Doctor Who story The Robots of Death (1977). E was not impressed; I didn’t tell her fan wisdom sees it as a Classic, whatever that means. I see it as somewhere between Classic and E’s “ok”. It has one of my favourite Doctor Who put-downs: “You’re a classic example of the inverse ratio between the size of the mouth and the size of the brain.” I should warn you that I tried to use it on the bullies at school and it did not work as well as it did for Tom Baker. I don’t have that air of Bohemian cool.
Looking in All the Right and Wrong Places
I think I did too much yesterday, between work, an hour or so of Torah study (about half after I got home from work rather than on the train in to work), dinner with my parents and doing a load of holiday-related banking stuff. I only got half an hour or so to relax, excluding reading at lunch at work and on the Tube home (which is not entirely relaxing), watching an episode of The Twilight Zone (Ninety Years Without Slumbering, not the best, but not the worst either). Today I was exhausted and didn’t get up until after 1pm, much to my father’s exasperation.
I felt somewhat depressed all day. Some of it was probably autistic exhaustion. Even so, there is so much wrong with the world that I can’t do anything about (Ukraine, the genocide of the Uyghurs, the incompetence of our political class…). It’s easy to get fixated on that.
I also had another novel rejection. There isn’t much more to say about that.
In terms of what I did achieve, I wrote to the JobCentre about my benefits again. I think these should have been stopped ages ago because (A) they were only supposed to last a year; (B) I am now working and earning more than the permitted amount; and (C) my diagnosis has changed, and while I still experience the same difficulties with energy, concentration and motivation in the workplace, I think autism, unlike depression, is (wrongly) not considered a genuine impairment to working. I know it’s silly to look for trouble if they’re still willing to give me free money, but I worry about being arrested for benefit fraud, or at least about being made to pay money back (for all that the amount I receive is pretty small).
It was a struggle finding the paper trail, though. I think of myself as an organised person, but I increasingly realise that I’m not, and that my filing for important papers (savings, work, tax, benefits etc.) need a serious overhaul. It still has the semblance of order, but has grown out of hand through lack of attention. I keep far too much stuff, a problem I had as a librarian too. I ought to sort it before getting married, but it just feels like Yet Another Thing to do alongside work, submitting my novel, researching/writing my second novel, learning to drive, keeping up with household chores, Torah study, relaxation (which I’m beginning to accept I need to take more seriously if I’m going to live with autism) and so on.
In an attempt to find fat to trim, I’m trying to cut internet time to an hour and a half a day. That’s for blogging, reading blogs, reading news sites and general internet browsing, not for using the internet for a non-recreational purpose, such as internet banking or shopping. I’m doing this partly to free up time, partly because, in monitoring what contributed to autistic fatigue and what restored me from it, prolonged internet use emerged pretty quickly as something I do a lot, but which rapidly becomes draining rather than restoring.
It is too early to say if it is working, although I haven’t had great success with similar attempts in the past. I just need more time in the day. If nothing else, I would like to relax by reading more actual books instead of blogs and news sites (important though those are). It would help my attempts to be more productive if I didn’t tire so easily and need so much sleep, particularly after work (see my first paragraph). It’s hard to get through life as an adult with adult responsibilities when I seem to need eleven, twelve or even thirteen hours of sleep most nights.
***
Holiday: Sunday 23 January
By this stage, E and I had established a pattern where she would work during the morning (her work hours are flexible, but she wasn’t on holiday) and I would sleep in a bit and slowly go through my morning routine, then we would go out late morning or early afternoon. Nevertheless, I was still feeling very frustrated at how tired I can get.
We went to The Jewish Museum, which we both found found disappointing. There weren’t enough exhibits on display and the most interesting thing was a special exhibit containing a collection of netsuke, seventeenth century Japanese miniature carved statues, which was not what you would expect to find in a Jewish museum. The exhibition it was part of was about a wealthy Austrian-Jewish family that lost their property, including the netsuke, in the Holocaust and tried to get it back afterwards. As E said, it was sad they lost their property, but lots of people lost their lives in the Holocaust (the family all seemed to flee to safety when the Nazis took over, just leaving their possessions behind to be seized), and it was hard to be too concerned over them, especially as they still seemed to be very wealthy. Still, the netsuke were interesting, if not exactly what I would have gone to the museum for.
The funniest thing was the (expensive) museum shop, which had a fair bit of what can only be described as Ruth Bader Ginsburg fan memorabilia. There was an RBG children’s book, which reminded me of something I saw in the paper a while back, where a columnist was complaining that one of the biggest bookshops in London had no children’s books about Chanukah, but did instead have a selection of children’s books on woke heroines like Greta Thunberg, Kamala Harris and RBG. What, she wondered, would an English five year old, make of a book about an American politician or judge?
But my favourite item in the shop was an RBG chanukiah (Chanukah lamp), with six inch high mini-RBG brandishing a gavel at the person lighting the lamp. The lamps stood on blocks that spelt out “I DISSENT,” which was also the title of RBG children’s autobiography, apparently to make her seem an exciting rebel rather than an accepted part of the political order. We saw a woman with an RBG tote bag later in the week too, so there’s obviously a market for this sort of “merch” (I hate that word). Welcome to the era of politics-as-lifestyle (and lifestyle-as-politics).
Afterwards we went to Central Park again, then on to some bookstores, new and second-hand. I picked up a copy of Doctor Who and the Doomsday Weapon, the more excitingly-titled novelisation of the 1971 Doctor Who story Colony in Space. The Doctor Who novelisations are a subject of nostalgia in their own right for many fans, particularly older ones. I read the novelisations of most stories before I got a chance to see them and they were a huge part of my childhood. I do vaguely think sometimes about trying collect the complete set (I have about forty, only a quarter or so of the total). Doctor Who and the Doomsday Weapon, like many of the early novelisations (before they started churning them out mechanically) has ‘value added’ in terms of more detailed characterisation and world-building compared with the TV story, so it was enjoyable to read (on the plane home) even though I’ve got the TV version on DVD. It also shifts the focus from the Master’s attempt to steal the titular weapon to the human drama of the colony (despite the titles suggesting the opposite), which is probably an improvement. E read it too and was also impressed.
Some time after sunset I realised that I had forgotten to daven Minchah (say Afternoon Prayers), and now it was too late. I seem to do this once every winter. In the evening, we got takeaway dinner from a kosher Mexican restaurant. We were impressed by the food, less so by the refusal of the kitchen staff to wear masks. Eating in E’s apartment, I realised the rubber sole was falling off one of my walking boots, and it did indeed fall off before I left for home. Fortunately, the boot still had a leather and plastic sole underneath that protected my foot during the ten minute walk back to my apartment, in the falling snow.
Monday 24 January
We visited The Book Cellar, a nice second-hand bookshop, and I picked up three more books: Talmudic Images (which I’ve already blogged about), the second Harry Potter (after making sure it was an English edition and not one ‘translated’ into American English) and the first volume of Richard Evans’ three-volume non-fiction study of Nazi Germany. Including the Doctor Who book and two Jewish books I ordered to come to E’s apartment for me to collect (to avoid international postage), I was coming back with six more books than I left with! Fortunately, throwing away my walking boots gave me some more space in my suitcase… Even so, I was disappointed to have to leave the two-volume hardback Annotated Sherlock Holmes on the Book Cellar’s shelves.
In the afternoon, we went to The Museum of Modern Art. We enjoyed the galleries on the late nineteenth and early twentieth centuries, but struggled with the noise in the building, which came not from patrons, but from some extremely noisy art installations. I was also annoyed that the cloakroom was closed, inevitably because of COVID (?!), and I was not allowed to wear my rucksack and had to carry it around instead. Add in the usual mask discomfort and, again, we only stayed for a couple of hours whereas pre-COVID we might have stayed for longer.
In the evening we had dinner at a kosher pizza place with E’s mother, who was visiting New York. This seemed to go well. It was good to meet her in person. Afterwards E spent time with her mother while I went back to my apartment and started reading Talmudic Images and generally pottered about not feeling like doing much. This turned out to be a bad sign, an indication that I was rapidly running out of spoons.
“Only stupid Earth brains like yours would have been fooled.”
I struggled to sleep last night. I’m not sure why Sundays are becoming my night for insomnia. Work today was OK, quite busy, but not really anything worth reporting. I did some shopping on the way home.
I was wondering if I would be able to go to depression group on Zoom, but I didn’t make it. I was quite tired when I got home and then I had to cook dinner (macaroni cheese, one of my quick, emergency recipes) and by the time I’d done that, I was totally burnt out. Even eating dinner and watching The Twilight Zone didn’t help. I had to sit for a while in a dimly-lit, quiet bedroom until I got through the burnout/sensory overload/exhaustion (I’ve never been entirely sure if this counts as an autistic shutdown or not).
It was a shame to miss depression group, but I wasn’t 100% looking forward to it. I wasn’t sure how to tell people about my engagement. I get a bit overwhelmed when I share positive news like that and people want to congratulate me and ask questions. It also takes a lot of energy and will-power for E and I to run this relationship long-distance, and I’m not sure how people will react to that. It’s made harder by our respective issues, and the fact that we can unconsciously pick up each other’s anxieties, even if we don’t consciously share them. I spoke to my therapist a bit about this, and she stressed the need to make sure I’m only worrying about the things that worry me. In addition, E and I are really looking forward to spending more time together next week, COVID-permitting, but I’m still anxious about travelling with all the COVID-prevention requirements. So I was worried I would come across as negative, which is probably an occupational hazard in a depression group, but I still was nervous of seeming that way when I felt everyone would expect me to uncomplicatedly happy.
Even after all this, I was still feeling quite drained. I decided to eat ice cream (despite my half-hearted diet) watch some original series Doctor Who, as I needed something safe and familiar to vegetate in front of. I opted for The Moonbase, as it’s not very good, so I don’t feel bad about not watching with E, plus it’s a story with half its episodes missing and reconstructed with animation which means I definitely wouldn’t watch it with E, as I felt watching the reconstructed The Evil of the Daleks didn’t work out well (I might, however, suggest watching The Invasion at some point, two animated episodes out of eight notwithstanding).
The Moonbase is very silly, complete with sarcastic, gloating, supposedly-emotionless Cybermen, as in my title quote, and I’m enjoying it a lot. I watched two episodes, with two more to go. I’m not sure if I’ll watch tonight or tomorrow. I don’t know why I can find episodes of the original series silly and endearing, but episodes of the new series that are probably objectively the same or better just annoy me.
Ben and Polly are two of the great, overlooked companions in Doctor Who. I don’t agree with the argument that they worked with William Hartnell, their “Swinging Sixties” style contrasting with Hartnell’s Victorian amateur inventor vibe, but didn’t work with Patrick Troughton’s quiet anarchism. Jamie is also a great companion, but the production team’s fondness for him, and their desire to slimline the TARDIS crew, deprived us of something good. To be fair, three companions is too many, certainly after the slower and often more thoughtful stories of the first two seasons.
A Hot Mess and a Dry Drunk
The expression “a hot mess” was one I learnt online. I don’t think it exists in British English. Our messes are apparently cold or lukewarm at best. But it’s pretty much how I feel right now.
I felt burnt out again today. It was a struggle to do anything. I managed to cook a very basic dinner (rice and lentils — the ‘cooking’ is mostly just letting it simmer away). I tried to phone Oxford University Press to find out whether an order I made online went through properly yesterday or not. It said it had initially, but then it said it hadn’t and I didn’t get a confirmation email. The order was nearly £60 after it had a discount on it, so I really don’t want to get it messed up. However, it seems they are shut for the holidays, which was not clear from the website.
I tried to book some airline tickets to see E. My Mum likes to go through every possible travel permutation to find the best deal. However, this type of process gives me autistic ‘too many options’ overload and I want to narrow the field to something I can cope with. This led to some tension, as I got stuck and needed her help, which meant doing it her way. There were some autistic communication issues too. Stress + autism = short temper, anxiety and rigid thinking. Mum did save me from making a huge mistake renting an Airbnb (accidentally booking a room rather than an apartment). I also have COVID travel bureaucracy anxiety (what if I forget to take a test?) and general travel anxiety (I have only travelled by myself once and, although I’ve travelled many times with my parents, I do not have a brilliant memory for what I have to do in an airport and they are generally overloading environments for someone on the spectrum). It’s weird to think that some people enjoy travelling and do it for fun, as their main hobby, even in COVID times. Weird.
I was all set to book flights, then I realised that, travelling on a Sunday (outward) and Monday (homeward) would make it hard or impossible to avoid taking COVID tests on Saturdays. So now I’m going to travel midweek, but I’ll need to find new flights. I just feel too stressed now to deal with this, and I don’t want to book anything while stressed in case I screw it up (not an unlikely scenario, sadly). I feel really stressed and just want to curl up and forget about the world (shutdown).
Other than that, I didn’t do much because I felt so burnt out. I didn’t write a devar Torah. I’m going to have to call this week a mental health week and not write one. I did ten minutes of Torah study, which I forced myself to do so that I had done some. I also did not get time to go for a walk. Aside from going to buy a mattress yesterday, I haven’t been out of the house since Sunday, which is not good for health, physical as well as psychological.
I felt dizzy while cooking again. I do need to try to see a doctor next week, if I can find a way to navigate the super long phone wait times, and then get an appointment that doesn’t clash with therapy or work.
I hope work tomorrow and having more structure to the day makes me feel better. I’m having dinner in the evening with my sister and brother-in-law, which should be good, but now is going to be stressful, as I’ll just want to come home and book flights. Possibly I should just wait until Saturday night or even Sunday, if it’s not more expensive to book for the same month of travel (I have no idea if this is the case).
I feel so overwhelmed with LIFE right now, living from day to day when I should be making longer-term plans, from travel next month to marriage and career and writing moves. Writing, finding an agent, applying for new jobs and learning to drive are probably going on the back burner for the next month (at least). And I don’t know how I’ll sleep tonight in this state.
I feel like I’m a dry drunk. I’m not currently clinically depressed, but it’s really easy to tip me over into anxiety and despair because I still have underlying issues and poor coping skills. And, for all that religion is such a big part of my life, I still struggle to really connect with God. If I didn’t have an understanding of God that transcended the purely experiential, I doubt I could stay religious, because I don’t feel God the way some people (apparently) do. And that saddens me, not least because I’m doing all the right things and have been for years, and it’s still not working.
Energy Accounting and God’s (Lack of) Emotions
I struggled to sleep last night, and then massively overslept today (again). Then I felt wiped out in the afternoon, although I managed to go mattress shopping with my parents. (I was astounded as usual at the ease with which my parents can chat to the shop assistant. I can’t do this at all!)
I still feel like I’m struggling with all the stuff I’m supposed to do (generally, not just today), even without my near-permanent exhaustion. And I know that no one makes me do regular prayer and Torah study, or write a weekly devar Torah, or write novels and try to get them published and I could cut all these things from my life easily, except that it would be even smaller and less meaningful than it already is. I can accept that some of these things might have to be cut down or put on hold for a year or two as E and I move towards marriage. It doesn’t make it easier to decide what gets cut, and how much.
In terms of keeping up with writing while struggling to do other things, I’ve heard of “microwriting,” writing in tiny bursts of just a couple of minutes. I can see they would add up, but I feel that I need a longer period to really get in to some writing, so I’m not planning on microwriting my next novel.
I would like to do some “energy accounting” to balance my energy output and intake to try to stop the burnout. The hardest part of energy accounting is having no real knowledge of how much energy tasks require, or how much I get back from different types of relaxation, which makes it all seem like guesswork. Ashley suggested that factoring in more relaxation time might improve energy levels overall, and it might, but I feel I already have some relaxation and I’m wary of factoring too much. It’s hard to work out how much is “correct.” If I could swap procrastination time for relaxation time, that might work, but reducing procrastination time is difficult, as it creeps in when trying to do other things rather than being scheduled. I have been trying to turn to blogs and sites online that I want to read for novel research rather than the Jewish and news sites I usually turn to when looking to procrastinate, but spending ages reading about addiction probably isn’t the best thing to do for other reasons. (It’s also constantly expanding. I just discovered that Chabad.org has a whole section of their site, which I think is still the largest Jewish website in the world, for Jewish addicts of all descriptions.)
Aside from the mattress, I tried to write my devar Torah for the week, but was really stumped. It’s not even a ‘difficult’ sedra (Torah reading). I just couldn’t think what to say. I found a sermon in the Sacred Fire: Torah from the Years of Fury 1939-1942, the Holocaust sermons of Rabbi Kalonymus Kalmish Shapira, the Piasczno Rebbe that I will try to summarise and, if I feel up to it, add to. But I’m not sure if I’ll be able to add much, or when exactly I’m going to get the time or energy to do this.
I basically spent much of the day feeling exhausted and depressed (like clinical depression in intensity) and I don’t know why. Actually, I wonder if it’s because I’ve been off work for a few days. I think I do need the structure, even if it exhausts me.
I will try to relax tonight and tomorrow and again at the start of next week when I have another bank holiday-induced break. I think going to work on the Thursdays will probably be for the best.
***
I had a thought today. I mentioned I’ve been spending time recently reading things by frum (religious Jewish) addicts as novel research. An idea that comes up a bit and is supposed to be inspirational is: “If I avoid acting out, it will give HaShem (God) nachas.” Nachas ruach or nachat ruach is the Hebrew term for contentment; in Yiddish, nachas refers more to the reflected glory from your children or grandchildren doing something successful. The idea is that God is emotionally pleased when an addict chooses not to act out or that He is generally pleased when people overcome the temptation to sin, like a parent who is pleased when their child does something significant.
I feel uncomfortable with all of this. Rambam (Rabbi Moshe ben Maimon aka Moses Maimonides) says that God has no emotions, because if God had emotions, we could divide God into ‘God’ and ‘God’s emotion(s)’. This would disrupt God’s unity and is a big no-no from the point of view of Rambam’s Medieval rationalism. The most we can say is that the Torah anthropomorphises God, saying He is angry, joyful etc. because it’s the only way to understand something that is beyond human understanding (the nature of God). But God Himself is never angry, joyful etc.
I wonder if this is why I struggle with the idea that God loves me. Because I view it as a metaphor for something I can’t understand and not something literally true, as the addicts were suggesting. I would agree with Rambam that the mitzvot (commandments) were given for our benefit; keeping or not keeping them makes no difference to God, Who is eternal and unchanging no matter what we do.
I do feel that Rambam and other Medieval rationalists only appeal to a very limited number of people, I suppose very intellectual people who don’t need much emotional connection to Judaism, or at least can separate the emotional connection from the intellectual. My feeling, having mostly studied Rambam second-hand, is that he neglected the affective side of Judaism and wanted everything to come through the intellect. So he wants Jews not to believe, but to know via logical proof that God exists and, while he is very open to the idea that mitzvot teach us behaviour and positive character traits, he sees this teaching as happening in a very intellectual way, making us think about something, not through the mitzvah making us have a particular emotion (this is the source of my disagreement with him about animal sacrifice which he struggled with, whereas I see it as building on fairly straightforward emotions even if it’s not exactly to modern tastes). I feel that the Medieval rationalists were right, or more right than the kabbalists (mystics) (from my limited knowledge of Medieval rationalism and kabbalah). But I find it hard to live my religious life like that. It’s too dry and unemotional.
(Aside: I just ordered this book. Even with a 30% discount code, it cost A LOT, for a book that I’m worried I won’t understand. I spent eighteen months procrastinating over whether to get it. But I feel that some of the things I struggle with intellectually in Judaism could be eased a little by serious academic Jewish philosophy. I am, generally speaking, be willing to pay a lot of money to learn things that I think are true and meaningful.)
(Actually, while the credit card was processed, it really looks like something went wrong with the order, as I haven’t had a confirmation email, and my order history on the publisher’s site is empty. Something else to worry about and deal with…)
***
I am nervous about buying plane tickets to go to New York to visit E tomorrow (buy the tickets tomorrow, not go to New York tomorrow, obviously), which is super scary, but I will try to do it. It would be scary even without COVID and the need for PCR tests, but with COVID it’s even worse. But I’m going to do it!
Vision of the Night 