If We Were Having Coffee… #WeekendCoffeeShare. Sofi, AVPD mess and birthday season.

   Let’s have a coffee today, shall we? Or whatever else, if you’re unfortunate like me and can’t have coffee, or just don’t like coffee. We have a huge assortment of teas, and cocoa, both real and instant. Or if you’d prefer a cold drink, I can pour you a glass of refreshing kefir, or water, either sparkling or just regular tap water. Oh yeah, and my Mum has made broth. My Mum makes broth almost every day these days, because, well, if you’re a regular on here, you know my Mum is a health and lifestyle geek and right now she’s all about keto, and she says that broth is super healthy for the skin and such because it has collagen, and Sofi and I are supposed to get in more sodium for health reasons so this is a good way. Regardless of how healthy it is, it’s actually yummy, and I always have mine with parsley. Or you can have some noodles with it and get chicken soup. Sofi and I have got a huge box of candy for Christmas from Olek, and I’ll happily share some with y’all so you have some snack to go with your coffee/tea, and if you’d rather have the broth, you can also have some of my Mum’s keto salad with it, it has chicken, mushrooms, cheese and pineapple in it. Well, since it has pineapple I guess it would be more appropriate to call it low-carb, but who cares? Obviously you’re also more than welcome to bring your own drink and/or food, either just for yourself or to share if you want. As always, thanks to Natalie  who hosts the Weekend Coffee Share linky. 🙂 So, if everyone has something to drink and/or eat and is sitting comfortably, let’s catch up. 

   If we were having coffee, I’d ask each of you how you’ve been doing since my last coffee share, and in particular this week…? 

   If we were having coffee, I would share with you that this has been quite a mentally messy week for me. Well, not just this week really, but the last few weeks, with a few-days-long breaks in between the messy times. Very emotional and moodswingy, low-key paranoid, filled with rumination, cringe fits, self-loathing and other fun things. I call that AVPD flare-ups for short (if you’re new and don’t know, AVPD stands for avoidant personality disorder which is a condition that I have), even though technically personality disorders don’t have flare-ups, but I call it an AVPD flare-up when my symptoms get a lot worse than my baseline. Usually it happens to me after a lot of peopling, but lately it seems like even very small things throw me totally off kilter for days, sometimes I don’t even need any external event really. It’s been very emotionally exhausting and is very difficult to even put into words properly or express in any other way to other people, so the experience feels quite isolating because you can’t really talk to anyone about this no matter how understanding they may be, and on one hand you want to do it and share it with someone, but on the other you absolutely do not. All the more that communication pin general is also more difficult when I feel like that. But the weekend has been a bit better. Or else I probably wouldn’t be writing about this haha. We’ll see how long it lasts. 

   [For the next paragraph, tw for self-harm, not very graphic but at one point kind of Tmi and possibly a little gross  and mentioning methods of self-harm]

******

On a similarly glum note, if we were having coffee, I’d tell you that Sofi has also been struggling lately, and we’ve only learned about it this month… Since a couple of months, Sofi has been telling us that her cousin is going to therapy, and how Sofi would really really really like to go to therapy too. Mum tried asking her why, but Sofi would never give any specific answer, so she just figured that Sofi simply doesn’t know what she’s talking about and doesn’t understand what therapy is all about so thinks that it’s something fun. I agreed, but at the same time it popped into my mind that perhaps this is Sofi’s way of asking for help or something, perhaps she doesn’t want to talk about something to Mum, whom, after all, she sees every single day, so sometimes it’s really awkward to talk to your family about some difficult things. And I suggested that to Mum and told her that perhaps she could get Sofi into some free therapy via the National Health Fund that we have here, at least for starters, and if she doesn’t have a problem, she’ll get bored with it after one or two sessions and the topic will be over, but at least we’ll know that there’s nothing serious going on. Well, but it turned out not to be so easy to get free therapy for a teenager who doesn’t really have any obvious issues and just really wants to go to therapy, plus, despite my having been in therapy for years as a child, my Mum didn’t really know how to best go about it. So it took some time before she found a therapist for Sofi, and in the end she’s paying for it herself. Already during her first session, Sofi’s therapist called Mum, telling her that Sofi has got some uncontrollable crying fit and doesn’t really say much, and that she has admitted to cutting herself, which shocked Mum because Sofi generally used to be a very happy child, and Mum had no idea why she could be doing this. Later at night Mum came into my room and just completely out of the blue asked me if I could tell her why I’ve been self-harming. I didn’t know about Sofi yet, so obviously I immediately got suspicious and defensive, but then she told me that Sofi is doing it too, and she just wants to understand why people do such things, and that she feels that maybe she is to blame. I was just as shocked as Mum was, I couldn’t stop thinking about Sofi for the whole night. I didn’t really tell her why *I* have been self-harming (too complicated story, and I didn’t really feel up for that so suddenly) but just generally told her about various reasons why people, and especially kids, may do such things, and that it’s unlikely to have anything to do with her directly. I get why she has such feelings though, after all, it’s two of her three children that do this now, I’d probably also take it personally if I were a mother. The therapist advised for Sofi to be seen by a psychiatrist and continue therapy, but the soonest appointment my Mum could book with any child psychiatrist was in May. Since then, Mum would often talk to me about Sofi’s self-harm, which I wouldn’t have minded if not the fact that she sort of expected me to be like some sort of specialist on the matter, as if I were a therapist or something. Which would make sense if I were completely over it, but unfortunately, I’m probably not. I self-harm a lot less frequently now than I used to, but I still do. In fact, the shitty truth is that, about a week or so before Sofi’s disclosure, I got this paronychia thing (some sort of nail infection that you can get from zealous nail biting or picking, which I already had once a couple years ago) but this time round in my toe rather than a finger, which must have happened when I was picking at my nail at night while ruminating and picked almost my whole nail off. It wasn’t fully intentional and more like absent-minded or compulsive, but also not fully unintentional, but I let my Mum believe that it was just accidental. (It’s almost healed up now, in case anyone is worried or something) So I felt really weird with her asking me stuff like what she should do now. What could I know? 😀 Thankfully, after Sofi has shared some more, looking at it with cooler heads, we think that this could (hopefully) have been a one-off incident for Sofi. It seems that her former toxic friend has played some significant role in all this, probably multiplied by the general suckiness of puberty and the raging teenage hormones. Sofi has been rather grumpy and a little withdrawn from family life for a couple years now (though some degree of grumpiness and sulkiness is just part of her personality and has always been), but as far as I can tell as someone outside of her brain, she doesn’t seem very depressed, luckily. She hangs out with her friends a lot, spends long hours chatting to them and laughing on the phone, and seems to genuinely enjoy all the other things that she did previously and to have normal energy. She doesn’t really seem chronically sad or anything like that. I believe Sofi doesn’t know that I know about her cutting, or even if she does we don’t talk about it, but you regular people on here may know that we have this play with Sofi where we pretend that Misha can connect to either of us’ brain and speak through us, and I like to use that sometimes to get stuff out of Sofi because she is more inclined to talk about things that are difficult for some reason with Misha, rather than directly with me or with Mum, because with Misha it’s more fun and relaxed and Misha never draws any conclusions out loud. So one day, I, as Misha, tried to get an idea of what she generally thinks about life nowadays, is it good, is it bad, whatever, and that didn’t sound too depressing either, though of course I do realise that she could be hiding what she was actually thinking, but it doesn’t look like it’s the case, and Sofi was never good at hiding that sort of things as an extrovert. . I also had a gentle feel of her wrists when she was sleeping in my room one night and while they were pretty much covered in  cuts which were quite heartbreaking to see on someone like Sofi, they seemed to be rather superficial at first glance. I think it’s also a really positive sign that Sofi was so open about it with the therapist and told her about it right during the first session. I feel extremely sad for Sofi and I wish I could help her in some meaningful way, but now that both Mum and I have cooled off a bit after the initial news, we are very hopeful that with further therapy, this won’t repeat again. Honestly though, I feel like chopping her “friend” up into pieces and grilling and sacrificing to Misha. Oh wait, that’s probably a really bad idea, he could get intoxicated too! 

   [End of the potentially triggering bit]  

   ***** 

   If we were having coffee, I would tell you that, after barely over three months of usage, my Mum’s Apple Watch died! :O One day she went swimming in a swimming pool with it, which I personally thought was a risky business to begin with – I’m just generally ultra careful and would feel really weird putting any electronic device into water – but Mum said she had previously swum in a lake with it, and anyway Apple says you can swim with an Apple Watch, so why not. Her Apple Watch worked just fine when she went out of the pool, but by the time she got home, it was practically dead. She tried rinsing it, thinking some chlorine could have gotten into it, and then kept it in rice in case there was some water left in it, despite she obviously had the water lock on while swimming, but all those things didn’t help much. She managed to resurrect it for brief moments several times, but it was REALLY sluggish and its battery died within minutes of powering on when it was originally fully charged, and the Digital Crown apparently didn’t work properly as well. Mum was really pissed. Apple Watch is a luxury to begin with, hardly anyone who has it seriously needs it for anything, it’s just a whim, and same is for my Mum. So it’s all the more frustrating when such an unnecessary yet expensive whim object breaks after just a little bit of use, especially when Apple says that it’s okay to swim with it. So, as I needed to go to iSpot (Apple’s authorised service and reseller here in Poland) to get a new battery for my iPhone, we brought Mum’s poor, sick Apple Watch as well. My Mum was even more pissed when she learned out that Apple Watches are not fixable and that the warranty doesn’t cover water damage. The woman who was helping us with our devices was so kind that she didn’t write that Mum’s Apple Watch was actually swimming prior to its death when preparing it to be sent for servicing, so we had a very slight glimmer of hope that perhaps they won’t figure out that it had anything to do with water and will give her a new Apple Watch. Not that Mum needed one, or even seriously wanted at this point, but it would be fair. The whole week after that, my Mum was telling everyone who wanted to listen that Apple just sells lies or something like that. She got even more pissed when a couple people with Android watches were really surprised that this happened to her and told her that they can swim with theirs no problem. She thought an Apple Watch would be better than Android since she has an iPhone now and likes it, and if it’s so much more expensive than, say, a Garmin, it should be for a reason. But, well, surprise of surprises, a few days ago, Mum got a text saying that a brand new Apple Watch was waiting for her in iSpot. Some people are lucky, haha. I set it up for her all over again and now she’s happy and no longer curses Apple. 

   If we were having coffee, I’d tell you that birthday season is about to start in our family. Ughhhh! 😩 Tomorrow is Misha’s seventh birthday (so he’s going to be 44 in human years, HOW THE FLIP?!) Then on Wednesday it’s Bibiel’s birthday, which I should probably be happy about or something but I’m not sure what’s so cool about getting older, and I’m not really looking forward to peopling, which will probably be unavoidable because everyone will want to make me happy lol. And besides, I still haven’t figured out why it’s such an unbreakable tradition, but, oddly enough, my birthday usually messes up with my brain. Either I get period PRECISELY on that day and have disgusting PMS, or I get really overwhelmed with peopling and all the attention, or someone vomits and my emetophobia wakes up, or something awful happens, etc. etc. Then next week after that it’s my Dad’s name day, and he didn’t have any celebration for his birthday last year, so he’ll probably have a proper name day this year. And finally two weeks after Dad, Mum and Olek have their birthdays on the exact same day. This is going to be already during Lent, so there won’t be any major celebrations for sure, but the thing is, it’s my Mum’s 50th birthday. She always used to say that she’s not going to do a huge 50th birthday celebration like a lot of people in our family do, because it’s cringey and childish, but then at some point she started saying that she probably should, and more recently that maybe she’d even like, and started seriously looking into where she could organise it and talking a lot about it, how she’d like it to be a dancing party etc. except she won’t be doing it now, but on her name day in July. I’ll have to think about some super fancy cool and fun present for her in exchange for not having to be there. 😀 

   Oh, and lastly, if we were having coffee, I’d share about something that happened a little earlier than last week, but I thought it would be good to update you all on that. Well, so the big news is that I was fired from job! For the uninitiated, I used to work at my Dad’s, who works as a lorry/truck driver for a larger company and delivers fuel, but that larger company requires him to formally have his own business because it’s more lucrative for them this way. When I was eighteen, his accountant advised him to take advantage of it and hire me, because, since I am disabled, it wouldn’t cost him anything. Here in Poland it works (or rather used to work) so that when you employ a disabled person, the State Fund for the Rehabilitation of the Disabled pays you back the entire salary of such an employee and returns the cost of any adaptive equipment or other such things that make employing such person possible. So he wouldn’t suffer anything, and I would have some additional money alongside my regular disability benefits. I worked as an office worker, so basically helped him out with all the tech stuff that he needed to do as part of his job, which wasn’t much. Writing emails to his clients, printing stuff, tracking ships that he was supposed to tank etc. Except this year things have changed a bit and while my salary was still paid back to him, he also had to pay significant insurance premiums for  me, so it didn’t really pay off. So he officially fired me earlier this month. Most people (especially such as myself who aren’t really employable) would probably be really upset over this, but I knew that this was only going to be temporary, though honestly I did hope that it would last for a bit longer than it did. Still, I’m grateful for it anyways, as even working for those seven years that I did has helped me to save a fair bit, so that now that I don’t work, my financial situation will probably still be stable for a while. 

   Okay, I think that’s all from me. What would you tell me if we were having coffee? 🙂 

Question of the day.

   How did your 2023 start? 

   My answer: 

   Pretty normally. Honestly, I don’t really get celebrating New Year’s Eve, like in general, the fact of a new year starting is a rather neutral thing for me, and in particular, I don’t get the way most people seem to like to celebrate it, by getting drunk and staying up until as late as possible and do peopling. Ugh yuck. Oh yeah and the fireworks, I don’t see the point in that either, perhaps I would if I could actually see anything but I am kind of doubtful.

   So I didn’t do anything special for that day, in fact the first half of New Year’s Eve I actually had a migraine but thankfully it dissipated later on (things could have gotten quite challenging if it hadn’t until the evening so I really am very grateful). However both Olek and Sofi invited their respective mates here, and my poor parents, who originally planned to stay at home and perhaps invite a couple that they’re friends with, felt obligated to take part in a New Year’s Eve organised by my Mum’s cousins. 

   We’d had a few such situations last year where our parents would go out somewhere and my siblings would invite their friends, and while I generally didn’t mind it or anything, it did make me rather uneasy having some random peeps here and two parallel parties going on in the house at the same time, with the peeps running around the place and blasting music at full volume, and you can’t even have a proper guarantee that you won’t come across someone while sneaking out to the loo. And Misha gets all dysregulated as a result, I don’t know whether it’s more because of the noise, strange people, lack of structure or lack of Mummy but he gets very unsettled and it’s me who gets to deal with all that. And these peeps can’t even clean after themselves and leave loads of filth, I feel for their families. But  I have my room, after all, and no random peeps are allowed in here, (why would they  if they’re not my peeps), so I can and do stay in here and so can Misha if he wants, and listen to my own music and do my own things. 

   This time round I found it slightly more difficult though, because soon-ish after Sofi’s party started, I was treated to overhearing a whole very dynamic scene where the main character was Sofi’s friend puking (my room is next to the bathroom). For any potential uninformed newbies, I’m emetophobic so… Well, actually, I didn’t even get properly scared, I knew it most likely wasn’t a sudden bout of stomach flu that she got, but hearing such a thing was rather distasteful. 😀 

   So at the start of  New Year, I think I was in bed listening to music and  engaging full-on in one of my most favourite hobbies, i.e. paracosming (is that even a legit word? Do I even care? 😀 ) Well yeah, now that I’m thinking of it, actually perhaps that’s the exact point of New Year’s, everyone gets to indulge in their worst addictions or develop new ones, so that then they can make a New Year’s resolution that they’ll try to indulge less. 😀 But yeah, as a lot of cultures and languages say, like New Year, like the whole year, so according to that I’m not very likely to become any less maladaptive of a daydreamer any time soon. Sofi’s friend will probably be more successful overcoming her issues, as she managed to indulge properly before midnight. 😛 I stayed in my BrainWorld until 1 AM, which was when my parents came back, full of regrets, because that get-together for cousins was even more boring than they predicted. And when they did, their regrets became significantly greater, as they saw the state of the house and in it some peeps with temporarily altered brain chemistry who were very reluctant to leave and a “v-v-veeer-r-rytired” Sofi”. Suffice it to say that neither Sofi nor Olek are allowed to invite friends  this year, and Sofi had apparently broken all the rules that she promised to follow, and others that Mum thought were obvious. I kind of wonder why, because Sofi is normally more sensible than that and it seemed a bit out of character for her, but she doesn’t even seem to feel any contrition or at least doesn’t show it at all. To be honest, while as I said I never particularly minded those parties when Sofi had them before (and they were  more civil and more teenage-like than the New Year’s one), I was always kind of surprised that Mum even allows this, because generally she is very attached to her house, hates the thought of someone coming in here when we’re away, doesn’t like to leave the house alone for too long as she’s afraid of theft, and has a strong sense of privacy, so allowing a bunch of random young people to come in and do practically whatever they want while she’s away seemed like a huge sacrifice on her side. Anyway, we all feel quite disappointed with Sofi, but also it feels like a relief for both of my parents and myself, and perhaps for Misha the most, that those parties are a thing of the past now. Olek has got a large-ish plot in a different town so he can still invite his friends there, and, actually, if I were him, I’d much prefer doing it at my own place, even if it’s not a proper house. And a part of me feels for Sofi, even though Mum says I shouldn’t because it’s her own fault, but I still do because she’s going to have an awful year by the sound of it. No parties, no sleepovers, no concerts, no hanging out after school… And I bet she doesn’t even have fun memories or anything, and probably a few spoilt friendships to make things worse. 

   Anyways, Sofi & Co. aside, after my parents came back, I decided I can’t be worse and went to sleep as well, or rather intended to fall asleep, but couldn’t. That’s why paracosming right before sleep isn’t always the best idea, ‘cause your brain gets all activated and doesn’t want to stop working. After 3 AM, I gave up and decided I’d rather be a zombie, because I had to get up early to go to church anyway, and I prefer to be a zombie than having to go through the torture of just having fallen asleep early in the morning, and then having to get up after what feels like a few minutes later, even if in reality I’d get two or three hours of sleep. But I wasn’t meant to start off the new year as a zombie, because I drifted off to sleep after 6. 

   I was woken up by my Dad who kept saying “Bibiel?… Bibiel… Bibiel…!” In a way that sounded a little off for some reason. When I managed to shake the thickest layer of sleep off my brain, I was rather surprised that instead of telling me to get up or something like that, he asked if I was hungry. I was WAAAy too disoriented to answer such complex, introspective questions, and a more conscious bit of my brain was a bit like “wtf? Why? did I sleep for a week or something?” so I think I uttered some very ambiguous response like “Hmmmmm…?”, and he must have decided that that means “yes” because he was something like “Let’s go then” and basically pulled me out of bed and led me, or rather dragged me, as I was basically hanging off his arm half-asleep, to the kitchen. If I weren’t as sleepy and all round confused, this would have been quite absurdly hilarious. Mum was in the kitchen and said that she thought I’d be very hungry because I ate very little the day before due to the migraine, and for me that is one of the triggers that causes me to feel really really faint so Mum was afraid and didn’t want this to happen to me so she sent Dad upstairs to ask me whether I was hungry, and he must have assumed that I was so out of it because I was feeling faint, rather than just zombie-ish. 😀 I was very appreciative of her consideration, even though I wasn’t hungry and didn’t feel any weak feeling or anything to be approaching. In the end, I was glad that Dad woke me up like that, because it was already after 9, so this way we could still make it to the 10:30 Mass instead of having to wait for the next one at 6 PM, I think it’s very lousy to go to evening Mass if you don’t have a solid reason for putting it off, or in any case I would feel as if I was being lousy. And Sofi wouldn’t be fit to go with us either way. So I was glad that, even though I fell asleep probably even later than most people who celebrate New Year’s the “right” way, I didn’t have a lousy day. And despite I was definitely under-sleeped, my sleepiness dissipated fairly quickly and I didn’t feel like a zombie or even half-zombie at all. 

   So we went to Mass and then had breakfast and I talked a lot with Mum, who was feeling really blue after that lame party and the Sofi thing and we ate a lot of apple pie. It was my grandad’s birthday and we wanted to visit him like we usually do but we found out that there are quite a lot of people there and my Mum was not in the mood for dealing with a lot of people so we decided we’ll go some other day. And other than that, it was really just a normal day. 

   How about you? 🙂 

Question of the day.

   How do you feel about video games? 

   My answer: 

   I don’t really play much games, for two main reasons. The first one is that the amounts of accessible video games is limited to begin with. You can’t just download or buy whatever game you want when you’re blind and expect that you’ll be able to play it right away. And secondly, out of those games that are accessible, I haven’t found many that I would  really be interested in. The only game that I really do play regularly is a life simulation game called Bitlife, which is a text-based mobile game, but I’m so ignorant that I’m not even sure if a text-based game counts as a video game, but after having done a bit of Googling some people do refer to Bitlife as a video game as well so I guess it can be a video game at the same time, and it’s not like it’s completely text-based, it does have visual stuff as well and some sounds too. If what most people like and look for in games can be judged by what most games are like, then I guess there must be very high demand for stuff that is full of strong emotions, tension, aggression, competition, adventure, quest for being THE MOST, be in the most powerful, the richest, the most evil, the fastest etc. I’m not really so much into all those things. I mean, okay, they can be fun sometimes, but it’s not something I would truly enjoy on a regular basis. I’ve never even liked adventure books, I read some as a kid and teen while still finding out what I actually like and what I don’t, and whenever I read adventure books, or mystery books or such, where you have for example a child character who plays detective while on holidays at his grandparents’, I’d be all like: “Why do you even bother? Why won’t you just enjoy your holidays like a normal kid and for example have a lie-in if you can instead of jumping out of bed at 5 AM to solve some local mystery that’s not even any of your business? Who would care about that?” I’m still very much like that. I rarely read the aforementioned adventure or mystery books, and same about crime novels, science fiction, or fantasy, unless the heavily folklore-infused stuff like Tolkien. So similarly I don’t play games like that either. I don’t play shooters (don’t even know if any are accessible actually, but either way I wouldn’t), because they seem utterly pointless to me. Not necessarily because I’m so afraid of violence that I wouldn’t kill anyone even in a game (you can kill people in BitLife and I have done it), but killing for the mere sake of killing is as pointless of an activity as it gets imo. I don’t play strategy, mostly because I don’t seem to be very good at this kind of thinking. I’ve played some strategy games that I found mildly to moderately interesting but I was quite easily discouraged with each of them, and again, getting as rich and powerful as possible just for the sake of it can be fun for a while but not long-term. Long-term I’d happily be less than that if I could have an interesting plot and a well-developed character, but usually it seems to be just about expanding your empire or whatever else and earning achievements with not much depth to it. I don’t play sports-related games, because I’m not into sports in any way, although gimme an accessible horse riding game or sim or generally something revolving around horses and I’ll happily try it out. I don’t play multiplayer games because, well, I’m not a multiplayer, I’m a MiniPlayer, in every sense of this word (except for the YouTube MiniPlayer, in case you were wondering 🙃). I don’t play logical games except for word games, because all others feel dangerously close to math, even if they don’t involve math as such, they just feel and smell and look and taste and sound like math, ewwww! 

   So yeah, I play BitLife for the most part. When you play BitLife, look at their weekly challenges, read what people want in the game, it is also clear that BitLife definitely aims for much the same things as most games – be rich, be famous, be evil, what not. – And from what I see most people play it like that. When I let Sofi play BitLife, the only thing she’d do when her character grew up was alternating between burgling houses, robbing banks and gambling, because she found it thrilling. I mean, yeah, okay, it is thrilling and I do it sometimes too when I play some character whom such things fit, but doing it like all the time your whole life? So eventually I uninstalled BitLife from her phone because she’s still a kid so if she can’t play it less pathologically, I guess she shouldn’t at all at her age.

   I like BitLife because I can play it the way I want. There’s nothing you have to do, you don’t win it or lose it, you just live. And I also like BitLife because I find people interesting as individuals, and here you can basically pretend you’re someone else, pretty much whoever you want. The way I personally usually play BitLife is I create a character in my head, who they are, what sort of personality and life they have, what flaws, what advantages, and then I play their life in BitLife the way I think such a person’s life should look like. Sometimes they’re completely random characters, sometimes peeps from my BrainWorld or sometimes I try recreating lives of people I know or book characters etc. And in the game, it’s hardly so that everything goes to plan, so there are usually some more or less interesting plot twists along the way. Anyway, I always like to imagine my BitLife character as I play, and have a bit of a movie going on in my head as I progress with the game. Then when the character dies, or when I just feel like switching or need to switch for whatever  reason, I switch to one of their children, and then one of that child’s children and we have a whole dynasty where everyone has loads of children with unusual names (BitLife can generate names from some name bank it has but I always name my children there myself because there’s also such  option, my current character, for example, is called Anne-Micheline Grønberg-Cleary, her father is Norwegian and her mother is Anglo-Irish and she also has some Dutch and Welsh ancestry and she currently lives in LA and runs a healthy food store which is just about to go bankrupt because naturally she’s near-dyscalculic and I don’t know what she’ll do next with her life). Which is why I think it stinks like a skunk that BitLife still doesn’t have more advanced family features – I mean you have parents, siblings, lovers, children, grandchildren, nieces and nephews (oh and family pets if that counts), but you cannot interact with your grandparents, cousins, aunts, uncles etc. It’s not very realistic that a grandparent can interact with their grandchild but the grandchild cannot interact with the grandparent, but there are more such bigger and smaller ridiculosities in the game, like that every country that doesn’t have euros or pounds has dollars, and generally even though you can play in almost any country, the whole thing is absurdly US-centric. Like I once lived in Saudi Arabia and had a scenario where my cat allegedly threw an urn with the ashes of some distant ancestor of mine off the mantlepiece, and I was like: “Yeah, because Muslims sure cremate their ancestors, right?” It’s unclean. 😀 Or you can be a Swede going to a Swedish school and turns out your Swedish language teacher is actually from Mongolia lol. 

   Because Bitlife is largely text-based, it’s not as immersive as other video games, and a lot of the play feels repetitive when you play it for some time, so it absolutely can and does get boring. But on the other hand you can also live each life a bit differently so that things are never the same, and you do have quite a lot of options as for what you can do with your life, even if not as many as we’d ideally like (I’ve always wanted to homeschool my kids in Bitlife for example but what can you do, you have no say as to what school your children will go to, you can’t express your opinion on their new girlfriend/boyfriend or tell them how distasted you are when they say after years of you paying their college tuition that they’ve become a stripper or an escort! 😩 ). And BitLife devs may not be the fastest at releasing updates but the game is being developed so new things are added nonetheless. I wish I could also try playing their other game – CatLife – which is what it sounds like, a cat’s life sim, but it isn’t accessible even though it’s about a year old now so it’ll probably never be, and people say it’s not that good anyway, but I’d like to find it out myself. 😀 

   Most of all though, I’d like to be able to play The Sims, because it must be like a more fun and expanded version of BitLife. But I doubt it will ever become accessible for screen readers with the way it works. 

   Overall though, how do I feel about video games? Well mostly neutral. For the most part I don’t care. But I get why people who like them do, and I get why people who don’t like them say things like that video games kill creativity and imagination or desensitise you to violence and are addictive, although I don’t like generalising that they all do, like the mere fact that something is a video game means it’s bad and will make your brain rot. Even though I have never came across an accessible, interesting and truly valuable video game, I’m sure that there are such and that they are as valid pieces of art as good books, films and music. And speaking of music, game soundtracks can be great too. Or they can be creepy. I mean seriously, last year Sofi had a phase where she played some stupid little game on her phone, I don’t know what it was called or what the overall point was but you had a few parallel worlds in there and some weird creatures and you were racing someone, that’s about as much as I can remember, but what I remember most vividly is that each of those worlds had a different tune that played while you were in it, and one of them was absolutely creepy. Of course, for the uninitiated newbies, I don’t mean creepy in an objective sense, like spooky or anything, but just sensorily creepy for me, not sitting well with my brain, for lack of a more suitable description of the phenomenon. I’m so grateful to God that Sofi no longer plays that game. 

   So, how do you feel about video games? And what games do you play, if any at all? 🙂 

Question of the day.

   What did you try and found out it’s not for you? 

   My answer: 

   Making music. I’ve already written on here how I used to sing a lot when I was little, and I’m pretty sure I must have liked it, though sometimes I wonder whether my love for it evolved naturally, or was it coaxed a bit by my well-meaning family, once they found out that Bibiel can hold a tune and that music is something that a lot of blind people are good at. But in any case, I at least thought that I liked it, and I was singing all the time and liked to show off my abilities, and whenever someone would ask me what I wanted to be when I grow up, I would always say either a singer or a musician or both, or that I wanted to “do a career”. I also used to take part in song contests for children from a very early age, but I already wrote not so long ago about that bad case of Bibiel propaganda in a school for intellectually disabled children where I was the only non-intellectually disabled kid from outside that school who took part in that contest and won it like three or four times in a row. I still feel sad for those children lol, I mean their teachers or whoever organised that stuff must have been quite dumb to let one single non-intellectually disabled child who hadn’t even reached school age yet take part in that contest just so no one from the actual school could ever win. 😀 I suppose though that perhaps it was someone in my family, like my grand who is a very sociable person and knows lots of people in her town where that school was, who must have had a good relationship with someone in that school and convinced them to do that.  

   Then when I went to school, or preschool at first, to be exact, it was a very musical environment as well so they encouraged me to continue singing as well. I also got to sing during many more contests, for example in the religious song contest twice, or various kinds of celebrations and such either within the whole blind centre thing or a bit larger stuff. 

   Speaking of the religious song contests, when I was taking part in the first one, I was prepared for it by the headmistress of the music school that was part of the whole blind centre thing. I wasn’t a member of the music school then as few preschool-aged kids were, she just must have learnt somehow that I’m into singing and figured that it would be a good idea to include me in that contest although I remember being ever so slightly intimidated that most of the children taking part in it, including the ones who sang some bits of my song, , were quite a lot older than me, like teenagers. But it was still all very exciting. The headmistress was quite a particular person in some regards and I’d heard that many students didn’t really like her or find her a bit intimidating, but while I do remember she was quite demanding, she was also very nice to me and I actually liked her a lot, though for Bibiel back then it didn’t take much to like someone a lot. I remember how she showed me all kinds of instruments that were in the room where we were rehearsing and how to play them, and when I think about it now, it seemed like the whole preparation time must have really taken quite a few weeks. The contest finally came, Bibiel came third in it, and then suddenly it was over. I guess it was a bit confusing for my Bibiel brain, and I was wondering why I no longer have those singing lessons. So finally one day I asked one of the preschool staff, but she had no idea and told me to ask our eurhythmics teacher when she comes, because she worked in the music school as well so might know better. ANd so I did ask the eurhythmics teacher. She asked me what instrument I used to play in there, which made me go dumbstruck for a while, because, umm, we weren’t really playing anything, just singing. But the headmistress was playing piano so eventually I said piano. The eurhythmics teacher said that it’s someone else who teaches piano and mentioned that teacher’s name and said she’ll talk to her. And that’s how, quite accidentally, Bibielz ended up in music school before Bibielz even realised it. 😀 

   I had a really fun, chatty and engaging piano teacher and like talking to her about all kinds of things, but I quickly learned that playing piano isn’t going to be quite as easy as singing. I did like it in general, but slowly felt more and more discouraged, because to play really well and the way I wanted to play in my mind, I had to have more coordination than I actually had. I knew what I should do in theory, but in practice my hands didn’t always cooperate with my brain too well and so I was progressing very slowly. 

   Once I started actual school, I continued learning piano and a lot of the other kids from my class and boarding school group were also in music school by then, I also sang more or less regularly, including occasionally psalms in church and stuff like that. Together with my other school friends, I also started having various theoretical activities as part of music school, like ear training and other stuff that I don’t even know how it’s called in English. But we’d learn scores, listen to classical music etc. etc. and as far as I remember we all found it rather boring at that point. 

   As I continued to struggle quite a lot with the piano, and my brain started to change quite a lot, both in a natural way as in developing and a more pathological way as in depression, which I only got diagnosed with at age 10 but had been feeling like that since I was 8, which I wrote about in that post I linked above, gradually, I started losing all the fun that I had with music and singing, and instead started to find it quite stressful and overwhelming. Then when I was ten, I changed schools and went to an inclusive school closer to home, which I was really happy about in general because I always wanted to be able to go to school closer to home so that I could be home every single day rather than go there once a few weeks. While being home was certainly a very welcome change, my brains grew more and more neurotic and depressive, which wasn’t helped by the Achilles tendon surgery I had to had in the meantime and then was recovering for long weeks without having much to do in the meantime, and obviously boredom only worsens shit like that. My being in the inclusive school was also not all as great as we originally hoped. Unlike in the blind school, where everything is prepared for children’s education beforehand, here, my Mum had to cover the costs of my school books. Printing books in Braille isn’t a cheap business, and if you want to order a particular book to be printed, you have to pay a small fortune. So my Mum wasn’t even able to pay for all my school books, only the ones for math which we figured would be the most necessary because other subjects would be easier for me to learn than math, and also the math teacher insisted that I have exactly the same books as the whole class. It didn’t work like that anyway, because as soon as the printing company sent one volume (Braille books typically have several volumes because they’re naturally larger than normal print books and Braille letters take up more space), my class was already further ahead in their book and the volume I had didn’t cover that yet. 😀 Also my Mum was expected to help me with school work a lot, again particularly with math which my Mum has little idea about. If the teacher didn’t have time to explain something to me during class, I’d have to do it with Mum, and she’d have to help me with homework from all subjects as well, because she had the books in normal print and would read to me what I was supposed to do etc. That was difficult because Mum had baby Sofi to take care of, and those schooling sessions could take ages. I was also totally not used to it, as I used to do all my school work totally independently and be done with it in no time, so having to wait for Mum to help me out was insanely frustrating. So after the second year of my stay at that school, even I could see that, academically, it would be a lot better for me if I went back to the blind school, and Mum convinced me to make that move, telling me that she’ll make my biggest dream come true in return, which at the time was meeting the Polish writer Małgorzata Musierowicz, and she did eventually make my dream come true. However, in the end she didn’t even have to use that bribe, because during holidays after that second school year, we got involved in a huge shit thanks to that inclusive school, which I wrote about here, and after that there was no way I could imagine seeing those people again. 

   But, going back to the actual topic of this post, during my whole stay at the inclusive school, I didn’t really sing all that much anymore. In fact not at all. And I didn’t really miss it one bit. On the contrary, when I thought about going back to the blind school, and doing all that music stuff all over again, it made me feel a bit sick. My Mum strongly encouraged me to take up the piano again though. All because, years earlier, I told her how I once imagined being a mummy of a huge family and how it would be neat if I could play the piano for all my children, which was an imagining I had based on a book I was reading at the time and the main character being like that. 😀 My Mum didn’t quite realise yet that I tend to have ALL kinds of daydreams, and the mere fact that I have daydreamed about something, doesn’t have to mean that I seriously want to do it in real life. And I didn’t realise yet that sometimes it’s better to keep your daydreams to yourself, or else there’s a risk that people might take you seriously. 😀 That’s, after all, a huge pro of daydreams, that you can switch between them whenever you want and don’t have to commit to one. When I imagine something, it definitely isn’t always something that I’d like experiencing for real, it’s just fun to imagine it for a while. So anyway, whenever I’d say that I want to quit the piano, she’d remind me of that daydream and said that I’d later regret my decision. The school people of course also encouraged me to take it up again. 

   This time round, my previous piano teacher was on maternity leave I believe, so I was assigned a different one – an older, very serious lady who had the patience of a saint, and as she once admitted, she graded me based on my good intentions, which I thought both very amusing and very kind of her, although I don’t think any good intentions for playing the piano were left in me by that point, so I guess I totally didn’t deserve the good grades I got Fromm her. 😀 Also as a way of compromise between me vs the school people and Mum, I wasn’t in music school anymore, but instead in something that would literally translate to musical fire or musical hearth from Polish, I don’t know what it’s called in English or if it’s called at all, anyway it was a sort of less demanding alternative to music school, where you could learn to play instrument but didn’t have to take so many exams or do theory and it was a lot less serious. I was very adamant though that I wouldn’t do singing anymore. And, thankfully, I didn’t even have to fight too much about it, because I think people realised that it’s no longer that Bibiel who liked singing so much, and I was very glad to be free at least of that. I did occasionally sing a psalm in church if they had to find someone quickly and no one else could do that, but that was it. And like I’ve already mentioned, some people seemed really disconsolate that I didn’t sing anymore, wording it sometimes in such a way that you could have thought I was my singing, and once I didn’t sing, I wasn’t really at all, or so it felt being on the receiving end of such comments. 😀 

   Eventually, I was able to break free from the piano as well. It turned out that I may need another feet surgery, and in order to try and prevent it from being a necessity, I had to have a lot of feet exercises and rehabilitation. So in order for that to fit into my schedule, I was more than happy to ditch the piano out of it. Theoretically, if I really wanted and was really motivated to do both, I’m sure I could, even if my schedule would be a bit packed, but I was elated to finally get rid of it out of my life, and this time round, my Mum didn’t oppose, as she understood that I didn’t want the surgery and neither did she. The piano was hardly a priority anymore. 

   Then later on, during some holidays, my friend and roommate was going to visit me at home. She played guitar, and I really wanted her to be able to play for me a bit, but I guess she either didn’t have her own guitar or couldn’t take it with her or something, don’t remember what exactly, in any case my Mum and me wanted to get hold of some guitar that she could play. And my Godmother had a friend who played the guitar, so we asked my Godmother to ask her friend if she could lend it to us for a few days, and she did. While my friend stayed with us, my Mum got an excellent idea that Bibiel could learn to play the guitar as well, and that this friend of my Godmother’s could teach me. The idea itself was not unappealing to me, but I was quite sure that if I wasn’t able to learn the piano very well for all those years, then the guitar would be even more difficult. You really have to be quite dextrous to play it, even if it’s not a super difficult instrument overall. But Mum was saying that, oh well, if I won’t like it or will find it too difficult, I won’t have to keep going, and I guess a part of me did indeed want to try in case it could work out. So she visited me every week during the remainder of the holidays and taught me some really basic things. It was very interesting, but again, practically, my brain-hand coordination or lack thereof made it very difficult and even when I thought that I have learned some chords or technique with her, when I tried to practice it by myself, I didn’t know how, or rather, I did know perfectly well on a cognitive level, but not on a manual level, if that even makes sense. 

   So, after the summer was over, my guitar playing was over too, and now I don’t even remember anything of that at all. 

   From my current perspective, even though all those years of various forms of musical education were mostly quite difficult for me, I am now grateful for that in a way. Because while I haven’t been making any music in any way more serious than singing Misha to sleep or playing a water bottle ever since quitting the guitar and I have no desire to do more (well theoretically I think I’d really like to be able to play the Celtic harp but I know that it’s either totally not doable for me, or even if it is, it would require a lot more effort than I’d be actually, seriously willing to put into something like that), I wouldn’t be able to get as much out of listening music as I do. I definitely think that my role is that of a listener rather than performer, but to be a good listener I think it’s also a good idea to be able to have a basic idea about performing, so that you can judge it more fairly. My understanding of music is definitely not as good as that of people who have actually graduated from music school or even can play an instrument well, I don’t have absolute pitch or anything like that, but still I think the many experiences of performing music and learning about it that I had make me a bit more of an attentive and analytical listener than people who have no such experiences at all. Also I think given that so many people can sing better or worse, and can be easily trained to sing even better than they do, it’s a good idea to give every child at least a taste of what it’s like to sing or play an instrument, ‘cause otherwise they’ll just have no idea if they like it or if they might actually be good at it. 

   People in my extended family still ask me on a regular basis if I still sing like I used to, or why I don’t anymore, even if they asked me precisely the same thing when we saw each other previously, and I usually tell people that I now do languages instead, which are kind of like a different form of music. Because I do think they are. So, who knows, if I didn’t have that early music education, maybe I wouldn’t take up languages either? I’m very curious what I’d do with my life then, but I doubt it would be anything interesting. 😀 

   How about you? What’s not for you? 🙂 

Question of the day.

   What are three things you couldn’t live without? 

   My answer: 

   The first such thing that comes to my mind is Holy Mass. And I mean Traditional Latin Mass in particular, because back when I used to go to the new Mass I never really felt this way. Despite being raised Catholic, I never really felt like I couldn’t live without Communion. I knew it theoretically, that it’s important in your spiritual life, that it’s the Bread of life and all that, but I didn’t really feel it as such. Kind of as if you knew that you need to eat to survive and know what minerals and vitamins are in which food and how many calories each food has and all the theoretical stuff like that but you had totally no appetite even though you ate regularly and you didn’t even feel it if you skipped a meal or a few. Spiritual anorexia or something? Lol will have to share this term with my Mum. 😀 But really, it’s kind of how it was with me. Before I became a TradCat sort of officially about a year ago, I went to Mass every Sunday and holiday and sometimes on regular week days as well (at least ever since my “re-conversion” about 7 years ago), but it was more out of habit/a feeling of obligation rather than because I actually felt a particular desire to do so. Now, even though in a way attending a Holy Mass is more challenging to me, because you could say that TLM isn’t perfectly accessible to blind people due to it being highly visual and you having to have the missal or other prayer book with you which I can’t really have  with me in church, I actually look forward to it every week and feel that it gives me something. I do realise that religion isn’t about how you feel, contrary to how many people think, rather, it is about giving praise to God and placing Him in the centre of everything instead of yourself, but TLM does that obviously, so if it also affects my feelings, I am really grateful for this additional grace. 

   Another thing would be music. It really really helps me with the sensory anxiety thing which kicks in during silence. Of course, the background noise that helps me counteract that anxiety doesn’t have to always be music, and it doesn’t have to be music that I like as long as it obviously isn’t sensorily creepy and doesn’t make me even more anxious, but good music works particularly well because it’s very brain-engaging and music that I like will usually be more effective for me than something totally neutral or something that doesn’t really speak to me on an emotional level at all. I think life would feel really dull if I had to live completely without music, and finding ways to counteract sensory anxiety, especially when alone, would be extremely challenging. Also my fazas would wither and what would I do? Probably wither too, for what is life without fazas? 😀 I keep saying that but for those who still don’t know, faza peak is the best antidepressant for me, so I’d be struggling extremely with no faza peaks and no hope for any. Unless my brain would be inventive and I’d start getting fazas on literary characters more instead of musicians, or perhaps on people I know, or, dunno, maybe I’d start watching movies instead of listening to music and get fazas on movie characters or actors or movie directors or whatever? 😀 That’s an interesting thing to ponder, but I wouldn’t really be overly enthused with such a change, because musical fazas are easier for me to feed than literary or potential film fazas, and I presume a lot easier to deal with than real life ones could be. 

   As for the third thing, I guess it’s not necessarily as bad as that I would completely not be able to live without it, but my life would feel extremely barren. This thing is my languages. I mean obviously I can’t eliminate Polish out of my life because everyone around me speaks it and it’s rooted in my brain deeper than the other languages and you got to think in some language lol, nor English because it’s present everywhere in bigger or smaller amounts, but if I had to, for whatever crazy reason, cut myself off all the others completely… ugh, what’s the point of living? I mean obviously there is a bigger point in living than languages from a Christian perspective, but you get what I mean I hope, I just wouldn’t really feel like there was much left to my life here. I had such a time in my life for seven years when, after two years of learning Swedish with my tutor, I had to stop it, because I was leaving the inclusive school closer to home and going back to the blind boarding school that I originally went to, and it was impossible for me to continue seeing my tutor and neither the school people nor my Mum could find someone in the school area who could teach me further, I had still rather little idea about technology and we weren’t really encouraged much (though not discouraged either) at that school to use tech devices for learning anyway. So my Swedish started to fade, and I felt quite embittered because I still felt that something, almost like a calling, that made me feel that I should learn Swedish, and whenever I accidentally heard a little bit of Swedish somewhere I felt extreme longing for it. So I tried as hard as I could to just forget about it, not knowing if I’d ever be able to pick it up again, and was I guess as successful as I could possibly be in such a thing, but then sometimes I’d hear it again in a movie or somewhere, or I’d hear someone speak about Swedish/Sweden, like once I came across a Swedish couple (of all the nations in the world) on a train, and then my brain was in pieces all over again. This means that I am now able to appreciate my languages and being able to learn them even more, but I definitely don’t feel like going through something similar all over again. I love my languages so much that I sometimes jokingly speak of them as if all of them were my partners/lovers or something like that, hence I refer to myself as a linguaphile. I can’t even decide which one I love most, it’s always the one I’m with at a given time. And being multilingual and learning new languages helps me keep my brain in shape and is my favourite way of doing it, so what would I do if I was left without it? I’d die of fear of getting Alzheimer’s some day, I guess. 

   How about you? 🙂 

Question of the day.

  OK, guess it’s time for some new question of the day, what do y’all think? 

   Simple one: 

   How do you feel about cold weather? 

   My answer: 

   I feel positively about it, in general. Way more than about hot weather for sure. Staying in cold conditions for longer can be difficult, but, unless it’s some really extreme cold, I think it’s a lot easier to deal with than heat. My brain and my whole system don’t really do heat. It makes my thinking sluggish and it makes me feel faint and weak pretty quickly and it makes my migraines worse, and sometimes when I’m in heat for long it even gives me nausea. And I’m just totally not a fan of that hot, clammy feeling. I’m the sort of person who has usually cold hands and feet, which I’m usually okay with ‘cause I’m used to it, so I don’t necessarily feel cold when I am cold, unless it’s night time, then I often need a hot water bottle because I won’t be able to fall asleep easily with cold feet. And I’m so used to the default state of my hands and feet being cold, that it feels really odd and kind of low-key disgusting when they get really warm, even if they aren’t sweaty or anything. Cold hands are a lot more practical. I find it a lot better to read Braille with cold fingers, though not necessarily really cold like freezing obviously. They’re also really good for migraines if you don’t have ice cubes or a cooling pad or whatever, or you can serve as a cooling pad for someone else afflicted with a headache, lol. 

   If you asked little Bibiel what was her favourite season, she would say summer without the slightest hesitation. I did indeed like summer a lot as a kid, ‘cause it was holidays time so I was at home as opposed to boarding school, or even when I wasn’t going to boarding school but to a school closer to home, I still always had school allergy and so summer months were very much welcome. Also you could go to the sea (which I still like a lot) or pick berries, which were my favourite fruit and we had a forest nearby. But now that I don’t go to school, I definitely much prefer winter because I just hate the heat. Even with all the introvert-unfriendly things about winter like Christmas and a lot of other celebrations in my family, I like the winter vibe a lot more. Oh, and I’m sure I’ve mentioned it a lot here that I have a weird affinity with ice. I just LOVE ice. Always have. When I was a kid, I dreamt of having a huge container filled with ice cubes that would never melt so I could play with them as much as I’d like. Would still be super happy to have such a thing. I love the feel of ice, the sound of ice cracking, the sound of ice in the glass with a drink (when I add ice to a drink I always add quite a lot of it and if there’s any ice left by the time I finish the drink, I just suck on it), icicles, everything! I even suck on ice when I’m really anxious because of emetophobia, like when I’m particularly triggered when someone in my family gets a tummy bug or something like that, ever since I heard that that’s what chemo patients do to avoid vomiting. I now know that it’s done more to keep them hydrated during those times, and I’m obviously not a chemo patient and don’t even vomit, but I find it helpful nonetheless. I suppose if I wasn’t blind and hadn’t such crappy balance, I could have been an ice skater or something. As it is though, the mere idea feels scary. 😀 

   Also, let’s not forget about the cosy aspect to cold weather. Isn’t it just so cool when you can stay warm and comfy in your bed at night, or sip on something hot while having some cosy slippers on while it’s snowing or even just raining heavily outside with the wind howling like crazy? Or even coming back home from such cold conditions, it feels really nice. I am particularly lucky in this regard because a couple years ago, my Mum made a pair of very fluffy overalls for me, which I really like to wear in the evenings, because they’re the only clothing item that my Mum made for me and they’re super fluffy. And there’s so much yummy food that is generally associated with cold weather, not to mention all the delicious Christmas foods. Some people think that cold weather is depressing, like my Dad for example, who says he’d be perfectly happy living somewhere hot like the Mediterranean countries or Latin America. But for me personally, sometimes heat can be more depressing just because of how it makes me feel physically, when I have no energy or even brainergy. So I don’t think I would mind it very much at all if I had to live in a really cold place like Finland, for example. I guess I would feel a lot more ambivalent about cold weather if I were a driver (like my Dad is, he’s a lorry driver), driving in winter conditions or when it’s foggy must be a nightmare. But even as it is, the snow and ice are still a challenge for blind people to get around in. Not only is it easy to fall, especially if you’ve got other things on top of blindness like the balance stuff in Bibiel’s case or like cerebral palsy that a lot of blind people also have etc. but also the snow can be really disorienting, because you can’t feel the ground under your feet and how it changes, which is often a very important cue in navigating, and additionally it can change the ambience/acoustics of a space where you are so it feels different than usual and might be confusing. Still, cold weather totally wins for me. 

   How about you? 🙂 

Question of the day (7th October).

   This question is overdue for yesterday, but feel free to answer it in regards to either today or yesterday or whenever you’re reading it. 

   How has your day been? 

   My answer: 

   I’d say today has been quite decent. I really overslept though, so it feels like it’s been a pretty short day. Right now I’m in a phase where I fall asleep around 1-3 AM, even though I actually do feel kind of sleepy/tired much earlier but at the same time my brain can’t shut down or something, and then I naturally sleep for around 12 hours. I always have an alarm set to 8, which I don’t have to get up or even wake up for if I really don’t feel like it, although generally that’s what I do usually try to aim for to have a bit of a structure regarding my messy sleep-wake cycle and I like being able to wake up around that time, but even when I don’t and I’m pretty sure I won’t do it the next day, I still have it just to have some sort of sense of time. But the last couple of days I’ve been oversleeping my alarms completely and when I wake up I can’t even recall ever hearing or switching them off. And it’s not as easy with my phone to switch an alarm off on autopilot without waking up at all even for a few seconds, because at night I have music or radio going from the iPhone via my Bluetooth speaker, and VoiceOver doesn’t like Bluetooth speakers because it always yells through the phone speaker at max volume whenever it has to say something at the same time as the speaker starts or stops playing, and it’s impossible working around that bug. So when my alarm goes off, the speaker stops playing for a while, and when I switch the alarm off, VoiceOver starts babbling on about notifications and whatever and the speaker starts playing again so VoiceOver yells at me. I always silence it as quickly as possible so that no one wakes up in case someone is still sleeping, but yeah, the point is that it’s impossible not to notice that unless you’re so sleepy that it’s more like some other altered state or manage to silence VoiceOver on autopilot just in the right second before it starts yelling. So, my little theory is that the problem isn’t me, but my Apple Watch might be messing something up. It’s not really founded in anything other than that I heard my alarm go off only once over the whole time that I’ve had it, and I usually charge it overnight, during which time you can’t use it, so perhaps it thinks that if I’m charging and not using it, I don’t need the alarm either, be it on the watch or the phone. I hope my sleep patterns change some time soon so I’ll be able to verify if that’s true. Anyway, because of that alarm thing I only woke up after 1 AM and was quite horrified with my lack of moderation. 😀 I mean it’s one thing to fall asleep late but sleeping 12 hours?! Not that it doesn’t happen a lot to me but I usually don’t like it very much unless I have fun dreams or am depressed so sleep is the best thing in the world but otherwise it feels like I’m being totally lazy. I can’t imagine having a normal job with such habits, lol. 

   After I woke up, I did all the usual things most people do after waking up, except I had lunch for breakfast, as Mum was already making it when I got up. 😀 Then I talked for a bit with my Mum, and then Misha called me ‘cause he was already in my room and wanted to go to sleep but he won’t go to sleep without his usual routine, and he can’t do his usual routine by himself. So I gave him snack and then he laid on Bibiel for a couple minutes and had a quick ear massage, and then moved onto his sheep skin and fell asleep till 7 PM and made lovely sleep noises. 

   I then did my usual weekend Norwegian learning session for an hour and then some Welsh reading that I didn’t manage to do during the week for about 20 minutes. After that I read today’s Mass from the Latin missal which I do every day like Mum and Sofi, and then prayed the Rosary for an hour. I normally only pray one part of Rosary daily or sometimes less frequently than that, which lasts only fifteen minutes, but since October is the month that is especially devoted to praying Rosary, and because I’m having a sort of intensive prayer time since last Thursday for two weeks as I’m praying for someone important to me, I figured I’ll at least try to challenge myself a bit more and pray the whole Rosary every day for at least those two weeks. 

   Misha was very quiet for all that time and lay sweetly on his sheep skin, so after that I couldn’t resist and laid down for a while with him and we had a bit of a cuddle time and I read a book meanwhile. I’m now reading a book about the visions of Anne Catherine Emmerich concerning the lives of Jesus and Mary as well as Jesus’ Passion, I guess it must be in English as well but I’m reading it in Polish and don’t know what it’s called in English. I don’t think this whole book can be treated as her authentic visions, because it was written by a German poet Clemens Brentano based on her words, but it’s been said that he could have likely added a lot of details into that to make the descriptions of everything feel richer and more in-depth, and even without knowing that it seems kind of weird that someone would have such detailed visions of what people’s houses looked like or what plants grew in Palestina etc. etc, I mean it’s interesting but not relevant spiritually. 😀 Still, it doesn’t contain anything that would be contradictory with teaching of the Church and I just treat it as a sort of very religious and soul-enriching historical novel inspired by Jesus’ life and Passion that can help one’s imagination a bit when, for example, reflecting on the mysteries of Rosary, rather than a super factual account of what Jesus’ and Mary’s lives were like and that everything that is said in this book necessarily had to happen exactly like it’s described and that Jesus seriously said all that he does in this book. I’m really enjoying it overall, though it’s super long, so even though I tend to be a very fast reader, I’m chewing through it very slowly, because I started it a week ago and am still barely 30-something percent into it. 

   After that it was already well after 4 PM, and I checked my emails and all the other stuff that needed checking, and then wrote in my diary, which also took me quite a while because I didn’t yesterday so had a lot of stuff to get out of my brain. In the meantime my Dad’s colleague visited. He hadn’t visited my Dad in ages but he got divorced very recently and now he seems to have finally remembered where all his colleagues live and visits everyone to share his woes. Sofi also came back from our grandparents’ and we chatted for a while and she played a bit with Misha but he was super sleepy so not much of a playmate and soon went back to sleep. But now Misha is up and crying downstairs ‘cause Mummy has disappeared somewhere outside and he’s upset. 

   How about you? 🙂 

Question of the day.

   What were you like as a child? 

   My answer: 

   Just to clarify for the beginning in case it could be confusing, I am going to mostly refer to my younger self as Bibiel or little Bibiel. Those who know me may know that I like to talk about myself as Bibiel or Bibielle in third person, and also use that name specifically for the more child-like/childish/quirky/creative part of me. When I was very young I didn’t use that specific word in reference to myself, and I never really think about my younger self as Bibiel because the child-like Bibiel part of my Brainworld and my younger self conjure two a bit different images, but in this post I’m going to refer to my younger self as Bibiel because: a) I like the word Bibiel, b) I guess it’s boring to constantly repeat awkward phrases like «my younger self» or «little me) and c) I went by a different legal name back then, which I don’t share on here, but Bibiel works well enough instead as it seems kind of absurd to think about my 5-or-so-year-old self as Emilia. Now for the actual answer. 

   
   Fairly different to what I’m like now, in a lot of ways. In fact, sometimes when I think back to the child version of me, the one below age 8, or when someone tells me about something from that time that had to do with little Bibiel or reminisces about how I was like then, I feel kind of flabbergasted and almost confused about how it’s even possible that I was different like that and liked so many things that I hate now, like peopling. Other people, family and others, have also told me countless times how I’ve changed since then. I mean, duh, everyone does, right? And I do think that some of those people are a little biased, like my Dad for whom the past is always better than the present, or my maternal grandparents for whom I was their first survived grandchild and they spent a lot of time with me as a little kid, doted on me and idealised me in a way, and then we parted ways a bit both emotionally and physically so they kind of know the little bibiel better than the present me, particularly my grandma, even though we see each other regularly. Of course I do recognise some of my current traits that I have in common with little Bibiel, like some of my weird ways of thinking or the funny way my Brainworld works, some of my interests or even some of my personality traits, but generally, whenever I thought about the little Bibiel more, I feel kind of perplexed, like wtf?! My Mum says I changed so much ‘cause of the boarding school, but I don’t think so. I mean yeah, sure, it must have been a strong trigger, very possibly the main one or one of the main ones, but I really highly doubt it could be the cause. I’ve always associated the whole «change» thing with my first major depressive episode, that I was diagnosed with when I was 10, but I’d been feeling depressed  ever since I was 8. It wasn’t that I was feeling some spectacular change in myself at that time or like it happened overnight as soon as I turned 8 or as soon as I started to feel depressed, but simply when I look back at my childhood that point in time seems to be more or less the dividing line between the «two Bibiels», although my Mum claims I was quite like that old Bibiel still when I was 10 and remembers me like that for the last time from my aunt’s wedding. So perhaps the new Bibiel was born after my Achilles tendons surgery or something. At around similar time when I started feeling depressed, I also started taking growth hormone and so it seems like my appearance changed more or less simultaneously as well. I was really short and quite chubby as a small kid, and then on growth hormone I suddenly went quite skinny, and while I’ve never really been tall especially compared with my immediate family members, I was growing so quickly at first that it kind of seemed like I became really tall in no time and people made lots of comments about how I suddenly changed physically so I guess it was a big deal for them lol. 

   Honestly? As much as I don’t necessarily love myself, I don’t really like that little Bibiel almost at all, so whenever and however it happened, I’m glad she’s gone. I mean, I only like her a bit because I have some sympathy for her or something and obviously in some regards understand her better than anyone else so I know that in a way she was just what her surroundings expected her to be or something like that, and we’ve been through the same things, but if she was someone external, like one of my little cousins or my sister for example, I probably wouldn’t like her at all because I wouldn’t even have that understanding to warm me up to her. That’s probably why all the therapist and coach speak about embracing your inner child irks me so much.

   When I was a teenager or so, my frozen in the past Dad really liked to watch old camera videos that Mum had recorded when Olek and me were kids, and insisted that we all do that together, or at least that whomever he was watching at a given point should be there and see themselves as well and reminisce with him about the good ole days and laugh at the same things over and over and over. There weren’t very many things that I hated about my family life more than that. I mostly hated watching these videos because, unlike for my Dad, I wasn’t really nostalgic for those times at all. Perhaps some little bits yes, but generally watching that shit always made me feel extremely blue and then I couldn’t stop ruminating. Then I had to go through that once again not long ago when Olek decided that he wanted to revive his childhood memories and got all those tapes digitalised and we had to watch ALL of them again. Thankfully, at that point it wasn’t just me who got hit with a blues afterwards, it hit my Mum as well and probably even stronger ‘cause she ended up crying and all. So from then on we decided that we’re not going to do the communal time-travelling sessions  anymore because it affects Mum in a rather destructive way. I wish I could be an easy cryer like that so perhaps it would have already been over much sooner, lol. 

   But the other reason, like I said, was that that little Bibiel was just so bloody annoying. In some ways almost like your typical annoying character from children’s books. People always liked me when I was a kid, I mean adults, kids probably didn’t care ‘cause she didn’t care about kids either and didn’t know how to interact with them. I’ve always perceived her as extremely selfish and not caring much for other people. I guess she only liked people and was nice to them when they gave her attention, otherwise acted like some sort of offended queen and could be downright rude, like I was rude to Olek nearly all the time on those tapes, even though Olek hardly got as much attention from our parents or other adults in our lives even without me trying, ‘cause Bibiel was so fucking adorable and oh so disabled. My Mum has told me that when Olek was very little, I would come over to him and whack him over the head full force with a toy or something. Later on, I was always very happy to snitch on him. Interestingly, despite Olek is no meek character, as a kid, he was always extremely tolerant of me, very protective and even if I was nasty to him or outright ignored him, he always wanted to play with me and waited patiently for whenever queen Bibielle would be in a more favourable/playful mood, which would usually kick in late in the evenings when we were already in beds. Then we’d make up all kinds of crazy games, or just keep laughing our brains off for no apparent reason, because  almost the mere fact that it’s bedtime makes everything instantly more hilarious, that’s one thing that I still do have in common with that Bibiel, I still get fits of giggles at night quite often. 😀 Or we’d play jump-bears (simply jumping on the beds, either standing up, or bouncing up and down on your bum, or on your back when in bed and yelling «Jump-bear!» Every time you jump, just ‘cause bears, and more exactly the Polish word «miś» which means bear, is super cool and you just can’t say it too many times during the day). That would naturally really annoy our parents that, instead of sleeping, we’d be double as noisy as during the day, but instead of dividing the punishment fairly or at least equally, most of the time, Dad would storm upstairs and sometimes Olek would get a spanking. Sometimes, he would tell Bibiel not to «provoke» Olek, but he never seemed to assume that Bibiel was just as active a part in those games, probably because he didn’t want to, because Bibiel is so adorable and cute, how could Bibiel ever do anything wrong like, for real? Believe it or not, but that’s what little Bibiel kind of thought herself. Bibiel knew that adult people go to confession, and I recall little Bibiel having a thought once that she will probably never have to do that, because she never seems to do anything wrong. In Bibiel’s defence, we can say that it certainly wasn’t because Bibiel was actually so self-assured. Bibiel was simply very rarely told that she did something wrong or that her behaviour wasn’t right sometimes. I don’t think Bibiel thought it in a way: «Oh yeah, I’m so amazing that I never sin and I won’t ever have to go to confession, it’s for losers», rather, I remember that thought more like feeling kind of curious, like, how come all the kids around are so badly-behaved and all the adults do bad things all the time but Bibiel is always so good? I guess that means Bibiel is somehow really special or something. 

   Once queen Bibielle’s playful mood would vane, she’d go totally quiet, and if Olek tried to initiate a conversation or something, he would usually have to call «Bibiel!» «Bibiel!» Several times, and then at some point would invariably hear a very indifferent: «I don’t want to talk to you anymore», which he always calmly respected and promptly fell asleep. 

   Aside from being sinless, Bibiel also thought she must be somehow incredibly smart, which was totally thanks to my grandad, who values brains in people more than anything else and thinks very highly of his own, so I wonder what would happen if Bibiel dared not to be smart, whether he’d still spoil her as much as he did and pay much attention to her at all. While Bibiel had no real desire to be cocky or smarter than others or anything like that, I think for a while she genuinely thought she was somehow incredibly smart for a child. The truth was simply that Bibiel absorbed information pretty quickly, and liked language, and obviously children who have a wide vocabulary seem a lot smarter, regardless of whether they actually are smarter than their peers, whatever «smarter» actually even means more broadly. Like I once heard of a condition called Williams syndrome where people have below average IQ but are really outstanding at acquiring language, and outsiders often think they’re of normal intelligence when they’re definitely not, so that’s all obviously very relative. 

   As you may be aware, Bibiel LOVED singing. At least that’s the common narrative. I’m actually really quite curious if that was truly the case, or that my family simply went along with that «Oh yeah, our Bibiel sings so well (read, not too out of key 😀 ) and we’ve heard that so many blind people are good at music, so our Bibiel must be really good too and we should promote that skill) or something along those lines except perhaps more subconsciously. Anyway, even if the latter was the case, Bibiel grew up with a conviction that she does love to sing, and wanted to be a singer when she grows up, or, as she always eloquently phrased it «do a career». And I think I’ve mentioned several times on here how there once was a movie about our blind nursery while I was there and they asked each of us what we would like to be, and 5-year-old Bibiel obviously said singer, plus in reference to every other girl saying that they want to be mummies (and one (girl) who wanted to be a daddy), Bibiel revealingly noticed that «I don’t want to have a baby ‘cause when women want to, they can have it, and when they don’t, they don’t have to». 

   There are loads of videos of Bibiel singing. I would have understood it if Bibiel was seriously some significantly talented child, but really, while Bibiel could sure sing in tune and even produce quite clear very high notes, I’ve heard a lot of children of similar age who are more remarkable in this respect. My Mum regrets it now that, when she focused so much on me, she left Olek out a bit, and that while there are so many recordings of Bibiel singing, Bibiel talking, Bibiel playing, Bibiel this, Bibiel that (why haven’t anyone recorded Bibiel pooping? 😛 ) there are comparably very few recordings of Olek. There’s only one recording where we sing together. Bibiel loved all kinds of public performances, and even if they were a bit stressful, it was pretty much only positive stress. It was our family tradition that, every year, Bibiel would take part in a song competition for disabled children that was taking place at one of our local schools. The odd thing was that the school was for intellectually disabled children, and Bibiel was the only non-intellectually disabled child there and the only one from outside that school. Bibiel would prepare her favourite song or even a few, sometimes these weren’t even whole songs but just a bit of this, a bit of that mixed up together and it was clear to everyone anyway that Bibiel will be the best, and it was always the flipping Bibiel who ended up leaving with a huge basketful of sweets. I mean, if that’s not utter Bibiel propaganda, wtf is it? 😀 One could have thought it must have been 20 years earlier and Bibiel was actually a representative of the USSR  or something like that. Poor children from that school. As if that wasn’t enough of Bibiel, later on Bibiel even made it to a radio show for children in Warsaw, and then some sort of a casting for some sort of advertisement about disabled children or whatever shit, in what is now my least favourite Polish television (not because of anything to do with the casting). My Dad apparently still regrets I didn’t win it. 

   And that singing thing is really what I remember about Bibiel most, and what others – family, strangers and everyone in between – seems to recall most strongly about Bibiel as well. 

   Knowing all that, you’d think that Bibiel must have been a very confident child. Except generally not. Bibiel did love to socialise, very much so. Any kind of gatherings, meeting new people, talking to people, it was definitely Bibiel’s element. Bibiel had a weird sort of way of becoming really clingy with stranger people. Like, a lot of people who would visit our house just a couple times or even once would very quickly and spontaneously earn the title of Auntie or Uncle. But Bibiel mostly only dealt well with one on one contact, when the other person would be wholly engrossed in listening to Bibiel’s constant chatter or at least pretended to be, and bonus points if they were good at pretending that they understood what she was on about (no one could actually understand, because basically Bibiel thought everyone was synaesthetic and fixated on sounds and thought the same way). 😀 Bibiel could also thrive in larger gatherings of humans, but only if they were made up of exclusively or mainly adults, and, again, if their attention was on Bibiel rather than constantly shifting and a bit on Bibiel and a bit off Bibiel. Kind of like our Misha is now. It is really weird to explain and I guess I don’t even get it anymore at this point but in a way, while Bibiel really enjoyed peopling, she was also really shy. She was very easily scared of people, and as much as she liked meeting new people and making friends with them, she was afraid or perhaps didn’t know how to initiate contacts with people, so the initiative always had to come out from the other side. I clearly remember that when Bibiel was in the nursery for the first few days and the children were brushing their teeth, which they started each at slightly different times depending when they finished their meals, everyone would always ask the staff person: «Can I rinse now, miss?!» Repeatedly, and she’d have to tell everyone whether they can or not. But Bibiel was too scared to ask. Or something. So while all the other children brushed and rinsed their teeth and went to beds, Bibiel was still standing by the sink, and brushing or at least pretending to brush her teeth. 😀 It’s really weird, ‘cause I guess normally «smart” people would see that everyone else’s left, so what’s the point of brushing your teeth all night? Apparently Bibiel didn’t pick that up, and like I say for several days, until she finally did. On the other hand it’s weird that the nursery people didn’t notice that though, perhaps they wanted to end their shifts quickly. 

   Bibiel was also oddly unassertive. My Dad’s family, who are generally pretty rough, unemotional people, were really touchy-feely with Bibiel, and they liked Bibiel’s singing no less than Mum’s family, even if they weren’t quite as exuberant about it. Apparently Bibiel liked visiting them, because I remember Bibiel praying every single evening that we would visit (paternal) gran tomorrow, but I also remember that, just like I usually am these days, Bibiel would also usually feel quite bored there, and kind of tense in a way. My late paternal grandpa had a real soft spot for Bibiel, and when we (that is of course Dad, Mum, Olek and Bibiel) would visit them, he would run out all smiley and call out «Our Bibiel is coming! Hello Bibiel!) as if everyone else was just a mass of air surrounding Bibiel. Bibiel liked him, but didn’t always feel comfortable around him, just like with the rest of Dad’s family. It was seriously like they thought that a blind child needs to be touched all the time to have any sort of meaningful contact with people or something. They would often suddenly scoop Bibiel up and carry her into the house, despite Mum’s faint protests that «Bibiel can walk…» or at my paternal aunt’s place my teenage cousins would always bring Bibiel to their rooms. If Bibiel sat at the table next to my parents, someone would often want her to come to them and sit on their lap, which Bibiel, despite her frequent clinginess with people, rarely felt enthused about. My uncles, trying their best to develop some sort of relationship with Bibiel, would often creep behind Bibiel and rub her cheek or ear with their finger, sometimes asking if Bibiel knows who this is. Bibiel didn’t like that either. Only Bibiel’s maternal grandad was officially allowed to play dumbly like that with Bibiel ‘cause he knew that Bibiel actually knows who it is and it was just him and Bibiel being silly. When Dad’s family did stuff like that, Bibiel would just sat stiffly there, sometimes smile and do whatever was polite and expected, other times just sitting and not doing anything, afraid to refuse the touchy-feely attention in any way or directly oppose someone. As I learned years later, my Mum hated that too, and, just like Bibiel, was also too afraid to speak up or do anything. 

   Also Bibiel was totally incompatible with other children, with only a few exceptions like Olek and a couple children from the nursery and some children older than Bibiel. This had gotten better once Bibiel went to primary, and then at some point I noticed that, at least in some respects, I much preferred talking to my peers than adults. 

   At nursery and to a lesser degree later in the beginning of primary, my Mum claims that Bibiel was also something of a school mascot. Bibiel would often represent the school at various outside song competitions, as well as sing on those organised within the school. Bibiel would bring flowers and thank all kinds of VIPs who visited our nursery/the whole blind institute thing or however I should  best call it in English, a photo of Bibiel would be featured in a magazine during then-First Lady’s visit to our school as she held and kissed Bibiel. My Dad apparently still has that pic, who cares that he wasn’t the supporter of that president? 😀 However Bibiel didn’t really notice it as much there because there were also other such kids that were sort of seen as more representative or something so it wasn’t like there was only Bibiel as it was the case at home, therefore it didn’t really bother Bibiel while it was happening. I only talked with Mum about it much later on and realised that it also had some other consequences for my stay there but that’s beyond the topic of Bibiel. From Bibiel’s representative school activity, I remember most vividly how we were often visited by people from Italian embassy or consulate, not sure exactly who they were but usually people just called them «the Italians» even though not all of them were Italians, and as far as I remember they visited us regularly throughout Bibiel’s three-year stay in the nursery. There was an Italian couple who seemed to be in charge of the whole thing, I’m not sure if they were the actual ambassadors or what, but I heard unofficially that they visited us so often and funded all sorts of things for us and stuff because they had a particular liking for one  girl in our nursery who had multiple disabilities and a difficult family situation and so they were like second/foster parents to her or something. But they also had some sort of special likings for many other children, including Bibiel. Bibiel didn’t really like them back though. SO many people and SO much noise were beyond even Bibiel’s capacity for peopling, no matter how genuinely nice they were. In fact, they were really nice to Bibiel, and two times they even organised Bibiel’s birthday in a proper style, with all them people who came giving Bibiel separate presents. Most of them knew that Bibiel doesn’t like to play the way normal kids do, like with dolls or whatever other kids play with, but instead Bibielz (still) like glass balls, as in I guess you guys call them marbles in the Anglosphere, or iron balls like you have in car bearings, or teddy bears, or glass/porcelain figurines, or any random, small objects that have a nice texture and are fun to fidget with. And most of them really cared and got Bibiel really nice things and lots of marbles and the like, except one couple who bought Bibiel a doll who was moving and singing something. Bibiel went from one thing to another with the translator lady showing her everything and the couple asked Bibiel whether Bibiel likes the doll, to which the normally so unassertive Bibiel simply answered «No». I guess Bibiel thought the translator would keep it to herself, but she didn’t, and the couple got understandably upset. They made up for it the next year, buying Bibiel a huge sack of beautiful marbles, such like Bibiel had never seen before. 

   When I returned to the blind school from being in an integration/inclusive school for two years at age 10 and 11, it quickly became very clear to everyone that that Bibiel, who was already waning before I went to the inclusive school, must have been taken by Moomins to the Moomin Valley or wherever else and is  totally gone. I was already very much set on that I won’t be singing publicly anymore or anything like that, but I didn’t even have to say that really because I wasn’t that Bibiel anymore and so no one expected it from me I guess. After that, I had quite a few interactions with different people who told me stuff like, for example: «You know, I remember how Ms. So-and-so said she wanted to have you in her class, because you sang so well and were so cute, awww what a pity that you don’t sing anymore!» That made me feel quite weird. I definitely didn’t want to come back to singing, I totally didn’t feel it, but hearing stuff like this, especially at the beginning, also made me feel like now I wasn’t really likeable at all. On the other hand, it made me feel relieved that, although this process of kind of «shedding» Bibiel was completely involuntary, I was no longer that Bibiel who got attention from everyone all the time, and in a way life became much more peaceful. 

   Aside from Bibiel’s a bit strange problems with peopling, like I’ve already mentioned, Bibiel had a very peculiar way of thinking, and thus also expressing herself. That is one area in which I kind of do regret that I’m not that Bibiel anymore, because looking back at little snippets from memories that I have, I believe little Bibiel’s brainlife was even more varied and lots more vivid than mine is currently. I don’t think I can describe that well so I won’t really try. In any case, one of Bibiel’s peculiarities was that for a long time she thought that other people also have the same synaesthesia as hers. Which, for the non-initiated folks, made understanding her a bit tricky sometimes. For example, Bibiel associated the words crocodile and dragon with two different kinds of metal trouser braces clips that she had in her play box, among other things, and whenever she saw similar brace clips anywhere she’d also call them «crocodiles» or «dragons». Don’t ask me why crocodiles and dragons, I’m curious too, I mean it’s interesting because generally synaesthetic associations like that are very random for me and crocodiles and dragons have quite a few things in common. That’s one reason why I think that my synaesthesia developed based on links between different objects/shapes/textures that Bibiel felt while at the same time hearing specific words spoken by people. Bibiel had such weird mindset that she thought that if someone’s name is associated in her mind with a specific food, they should like that food, or otherwise it’s… well, just wrong, dunno they should change their name or something. 😀 One person who was particularly tolerant of Bibiel’s synaesthetic chatter was my uncle, whose name Bibiel associated with the Chocapic cereal. And Bibiel would always go on and on and on about how «All Marcins must like Chocapic! Because Marcin tastes like Chocapic! It’s impossible that you don’t. Why don’t you like Chocapic? Did you like Chocapic as a child?» Etc. etc. etc. He must’ve thought I was high on Chocapic, but he and my aunt divorced so we haven’t seen each other in years. 

    Even before Bibiel had any idea about spelling, books and stuff like that, she had lots of favourite words, and while she liked some (like miś) for their sound, she liked most for their synaesthetic associations. When some specific word or object was on her mind, she liked to speak as much as possible using words that felt similar to the original word that she was thinking about, or that were associated with the object she was thinking about, because I can have multiple synaesthetic associations with one object. There’s still one Mother’s Day card in our house that Bibiel made  and it has wishes for Mum on it that to most people would probably sound very odd to be written by a child (well it was the nursery teacher who wrote them but the idea was entirely Bibiel’s). It goes something like: «Mummy, I wish you were very happy, very sensitive, very zealous, very benevolent to Daddy and Olek, very patient, very kind, very caring, very bright, and that you wouldn’t be deceitful, fearful, gruff, boastful and argumentative». I of course don’t remember that list of adjectives by heart and what they were exactly, but I know that Bibiel associated all of them with a particular thing – my grandma’s necklace, and they all happen to rhyme in Polish, and it’s quite a large group of adjectives really. – When my Mum saw this she just snorted, and I think Bibiel felt a bit hurt that she was so unappreciative. 😀 

   On the other hand, there were words that Bibiel feared, for all kinds of reasons. There are still such words, for that matter. But one particularly ridiculous example that I remember vividly and that was so bad that even my family remembers it to this day, is how Bibiel was scared of the word traffic. The word traffic in Polish is peculiar because the word that means also means a couple other unrelated things, for example a bath plug. Bibiel feared the word traffic so much because one radio station at the time had a horrific jingle for their traffic news that Bibiel found really scary. And so then when it turned out that bath plugs have something to do with traffic, Bibiel became panically afraid of bath plugs. Bibiel wouldn’t even touch one, which, as you can imagine, made baths a little bit complicated. As far as I remember, Bibiel seriously thought that these are the same «traffics» as the ones on the roads – lines and lines of rubbery «traffics» making the gulping water sounds, plus the jingle sound blended somewhere into that. – Bibiel was scared that if she even moves that damn bath plug, let alone plugs it out or in, that traffic jingle is going to explode over the whole bathroom and… don’t know what. Kill her or something.

   So, if Bibiel wasn’t chattering about her synaesthesia, it was the sensory anxiety, because again, she thought everyone must at least dislike the sounds that she finds scary. In a way I still find it baffling that people just usually don’t care. 

   Bibiel had a huge, metal box, in which she kept all kinds of things. Mostly marbles and iron balls, of course, but also loads of other small objects that could fit in one palm comfortably. From natural things like chestnuts or cones, to some little bits and bobs from my Dad’s garage, to the aforementioned brace clips, old-fashioned clip-on earrings, or the agate necklace of my grandma’s that Bibiel loved so much that at some point she just gave it to Bibiel because she weren’t wearing it anymore and how could she not give it to Bibiel if Bibiel so clearly wanted it? The contents of this box varied throughout the years a fair bit. What did Bibiel do with all that? Well, Bibiel sat in the living room, and fidgeted with every single object from that box – either waving it between her fingers, or tossing up and down in her palm, or whatever felt most intuitive with a specific object. – And, to an outside observer, it was just that. Some crazy Bibiel sitting on the floor and wiggling various random objects in her fingers while mumbling something to herself. Except there was more to it, because all the while playing with these objects, Bibiel was making up some sort of story, using the various toys as inspiration for fun words to include in the story. The stories could be based on anything – whether it be something that happened to Bibiel, a fairytale she recently listened to, something she heard in church, a random idea or imagining that popped into her mind, something that someone said, whatever. – Since she usually had multiple words associations with each object, there were a lot of words to be drawn from them and to be used in such stories, and to provide sometimes unpredictable plot twists. But even when Bibiel didn’t have her box with her, she could still play in some different ways in her mind. She had absolute tons of various weird mental games that were to do with language. She learned the alphabet pretty quickly, even though she had no idea how words are written or anything, and had her favourite letters as well as such that she disliked and based some of those games around that. Others were again based on synaesthesia. I remember that in particular she loved finding words new to herself that felt to touch or tasted like some particular thing. I can recall her sitting in my grandad’s car with him and trying to think of as many words as possible that would taste like any kind of ice cream, enlisting grandad’s help, because obviously she thought he knew what she was talking about. I guess in the end he was trying to think of words similar to those that she had already accumulated in her ice cream words collection and that proved to be a good strategy because I think Bibiel did learn a couple new words  that ticked the criterion after all, in particular I remember Bibiel being in awe with the very ice-creamy name Arabella that she never heard before. 

   And you know what? I still do it. Well, some of my language brain games are very different, and I don’t utilise them quite as often, and I don’t have a huge box like Bibiel did, I only have one little plastic fishy, but now the details work a bit differently. Anyway, I still fidget with this little fish in my fingers while making up stories, but I only do it when I’m alone and I’m sure that no one sees it. It’s really fun, you should try that too. They don’t even have to make much sense, although ideally they should at least seem like they do. My parents never understood what I was actually doing with that, and they don’t know that I still do. I mean, my Mum knows that I take the fish with me everywhere I go for longer than a day, but she thinks it’s just emotional, like that I just like her so much for whatever reason and can’t part with her. Well, in a way, yes, so I don’t tell her otherwise. My Dad had told me that he once asked Bibiel what she was doing while she was playing. Obviously she said «Playing». He asked how she was playing and if he could play too. Bibiel graciously allowed and he sat next to her, presumably waiting for instructions, but Bibiel already started playing again, not bothering about him. After a while, as Dad was sitting there observing her, she turned to him and, according to him, said: «You can’t play, you human you!» I have absolutely no recollection of that, but it cracked me up and since he told me that I always refer to him as «you human you» when he annoys me or something. 

   Okay, I think that’s already far more than enough about Bibiel for one day. Now I want to hear about your childhood selves. What were you like? Do you like yourself from when you were a child? Were you much different at all? 

Question of the day.

   How are you really? 

   My answer: 

   Pretty neutral I’d say. Okay overall. Didn’t get much good sleep as for some odd reason I had really annoying  tinnitus that wouldn’t go away pretty much until morning and it kept waking me up and was really frustrating. This is definitely not something that would be a regular thing for me so I got a bit worried and wondered whether it’s going to stay like this for longer-term, but it’s fully gone now so seems like it must have been just quite random. And I was really cold all night on top of that and couldn’t warm myself even with the hot water bottle, so I’m sure you know what it’s like to sleep when you’re cold meanwhile. But despite little sleep I don’t really feel sleepy or anything so I don’t really have a problem with it. 

   Also I’m still feeling a little bit excited about what my Mum and I did recently. I think I have mentioned to you that my Mum was thinking about possibly buying herself an Apple Watch, because now that she has an iPhone she often gets a bit nervous when she goes running or cycling and when someone calls or texts her, ‘cause she has to take the phone out and she’s worried that one day she’ll drop it and it’ll break, and I guess it must be just a little cumbersome replying to someone while cycling. Plus, she couldn’t find a good enough app for herself on iPhone for tracking kilometres that wouldn’t at the same time ooze with gentle toxicity and try to get her into the rivalling mode, yelling at her to share her «achievements» with friends or to break her records or whatever shit like that, when she just wants to do what she wants and when she wants and simply record the details of her sport activities for herself, she doesn’t do training for the sake of training or losing weight or stuff like that, just ‘cause she likes it. Initially I tried to discourage her from that because I didn’t think that Apple Watch would be much better in that department, it seemed to me, and still does in a way, that perhaps it’s even pushier with that sort of mentality, but Mum said that if it did all the other things well, she can ignore all the bs she doesn’t need like calories. And the more she thought about it the more she liked the idea, saying how Apple Watches look nice and things like that. It took her some time to make up her mind whether it would actually be as useful for her as she thinks, because she’s known for making impulsive decisions on the spur of a moment, and how hers should look, so she would look on Apple Store quite frequently and try to design it for herself so that it would fit her style and be a little different. She changed her mind a lot in the process, sometimes saying she actually doesn’t need it and while it could be fun, it’s not really necessary so why waste the money, and then she would say that actually why not buy something unnecessary for oneself once in a while as she doesn’t do that very often, since she’s on benefits and spends most of her money on Sofi and the only Apple Watch she was considering was the new SE 2 as she couldn’t afford anything more than that anyway. And finally last Saturday she made up her mind and stormed into my room saying that she needs to be delivered from constant thinking about it and make the decision once and for all before her mind changes again. 😀 Problem was that she didn’t have enough money on her card at that very moment so asked me if I could buy her the watch and then she’d give me the money back when she got them. So I gave her my phone so that she could choose the right looking Apple Watch, and as she was choosing everything, suddenly a wild thought popped into my mind, and I was all like: «Y’know what? Let’s make a deal! I’ll buy an Apple Watch for you and you’ll buy an Apple Watch for me, when you get the money». That wasn’t really as impulsive an idea as it may seem, I was already thinking a bit about whether Apple Watch might be useful at all for me in any way when Mum was dealing with her dilemma. Last month, I happened to have learned something about myself, or rather about something being a possibility, which I won’t be sharing just yet on here because I don’t have all the info yet ‘cause I’m still in the process of finding out and so I don’t want to prematurely raise any unnecessary emotions or tension or something, but I promise that if I’ll find out that it’s something more than just a possibility, I’ll update y’all on it. But anyway, finding that out made me think that, actually, perhaps an Apple Watch would be useful for me as well indeed. Maybe not as much as for my Mum, and not in the same way because I’m a semi-hermit so my phone generally doesn’t need to worry about being dropped somewhere outside and even when I go somewhere I very rarely take it with me, but it could still be useful if the possibility turns out to be reality, and even if not, I wanted to give it a try regardless. 

   And my Mum was happy with the deal. In fact, she was probably even happier than me. She’s a real chicken with technology so I think it made her feel better that I’ll have an Apple Watch too so I’ll be able to help her out make sense of it because she assumed that I would learn it faster. I think the thing isn’t about fast learning but about me being more inclined to actually sit and read about it, rather than blindly and chaotically try to do something without knowing anything about how to go about it which is how my Mum handles her devices and then it’s all like: «Hmmm, let’s guess what’s broken in the process”. In this situation, Mum really wanted our Apple Watches to arrive together, which was enough of a motivator that she decided on the spot to go transfer the change that she had to her card and then placed the order for my Apple Watch. Aren’t we just crazy people in this house? We got the same ones except my Mum’s is obviously larger, since I have mini hands, and hers is starlight with a red silicone band, whereas mine is silver with a slate blue braided loop band. 

   Our Apple Watches arrived together indeed on Tuesday. When my Mum went to get them from the delivery guy, she later told me that he said (as if Mum didn’t realise) that one package is addressed to «Some Bib-Bi-Bibiel Bibielz) and couldn’t restrain himself from saying that it sounds like an interesting name. Well thanks, it made my day. Yeah, I am a bit ironical, in case you’re wondering. But also I like when people say the word Bibiel out loud so for once I regret that I wasn’t there to hear it. I use Bibiel Bibielz as my Apple ID name ‘cause you obviously use Apple ID in all kinds of situations and I don’t always want some random peeps to know my full name, and don’t bother changing it just because I order something. Perhaps it’s further evidence of craziness. 😀 

   Anyway, we’re pretty happy with our Apple Watches, except I’m super mad at myself because I told my Mum to get herself an Apple Watch with cellular since it made sense if she’s going to use it when running, but I didn’t even think about checking previously whether our carrier even supports it. It seemed like an obvious thing to me that, since Apple Watches have been around for quite a while, duh they must be supported by carriers, right? Except ours does not support Apple Watch. So yeah, that was a fun discovery to make at the beginning for sure. My Mum claims it doesn’t matter ‘cause she has her phone with herself all the time anyway but I think it still sucks big time. But overall our Apple Watches are cool. I still find it kind of amusing that we both have Apple Watches, I never thought that either of us could be that kind of person lol. My Mum even sleeps with hers, but to me it still feels kind of off and I’m skeptical whether it’s actually comfortable. But I think I’ll try to do that at least once in a while ‘cause I’m curious about the sleep phases stuff. I wish it was possible to use apps like Voice Dream Reader or Audible without headphones on it, then perhaps Apple Watch could become a viable alternative for my PlexTalk at night and then it would be a very solid argument for me to get used to sleeping with it. I still hope that Apple will make my dream come true in the future. 

   How about your real feelings? 🙂 

Question of the day.

   What website did you use daily that doesn’t exist anymore? 

   My answer: 

   One example that came to my brain immediately is a very peculiar Polish website whose name literally translates to Great Calendar of Names (great as in large, not in a boasting sense lol). You know I’ve been a name nerd for years, and I’m into almost everything that has to do with names – their etymology,  popularity over time, social connotations associated with a specific name, trends, but even to some degree stuff that is seemingly as loosely associated with names as hagiography (writing about the lives of saints) as obviously saints have had a huge impact on how people in the Christian civilisation have named their offspring. So that calendar had name days for every single day (we do name days in Poland as several other European countries do, this is like a feast day associated with a specific name(s), often based on the commemoration day of the patron saint of that name if there is one, so when you have your name day you can celebrate it kind of like a birthday, although in some parts of the country they’re not quite as important or not celebrated at all, while in others a name day is a lot more celebrated than a birthday) ) but it wasn’t like your regular calendar that just shows you what day it is and two names per each day, it had loads and loads and loads of names for each day, pulled out of all sorts of different calendars, physical and online, from different points in history, as well as all kinds of name lists, name books, liturgical calendars, martyrologies and whatever else is out there, so basically it had data from all these places and books put in one place. And then when you clicked on a specific day, it would also show you what saints are venerated on that day and who they were, and that was very detailed as well, as it wasn’t just the most well-known saints, but also those that are pretty much only venerated somewhere locally or that it’s not even sure whether they actually existed but nonetheless their legendary existence had some impact on somewhere in the world, it also had people who weren’t even beatified but only declared venerable/servants of God, and aside from Catholic ones there were also Eastern Orthodox ones. The descriptions of their lives could sometimes also get quite lengthy if there was a lot that was known and could be written about that person, and if many sources mentioned them. I believe the sources themselves weren’t necessarily always very credible or trustworthy, but they weren’t listed anywhere, and I don’t think credibility or trustworthiness was the priority here, the author of that calendar seemed to just want to compile as complete a list of names as only possible and indeed I haven’t seen a more comprehensive Polish name resource when it comes to quantity either before or since that. The multiplicity of sources and their very diverse quality also contributed to a bit of a chaotic feel that it had, as it had different writing styles in different places and just simply looked like one huge bulky thing that combines a lot of bits and bobs from everywhere. Also separate from the calendar, there were alphabetical lists of names that were included in the calendar which had the origin of every name and if it’s been used in Poland lately at all, and with the more common names exactly how common they are. 

   The website itself apparently looked quite peculiar, because the man who made it was in his late 70’s from what I recall, he also had some other non-onomastic stuff on that website that I wasn’t into and I believe wrote some kind of a blog or articles or stuff like that on there as well, but I guess he wasn’t overly tech savvy because I once came across a discussion online where people were laughing at how dated that website looks but how at the same time it’s still so cool that he did such a thing, as people assumed, totally independently. As far as I and my screen reader were concerned, I saw nothing wrong with the thing, it was perfectly accessible, very easy to navigate and that was all I cared about. 

   I liked to look at that website daily to see all those huge lists of name days for each day and read the lives of the saints venerated on that day, and even though I thought I knew about a lot of very uncommon names and their origins, I still often found ones that were completely new to me. Like, it’s from that website that I learned that there is such a name as Tatul, which totally cracked me up because Tatul is how I call my Dad, and it seemed about just as absurd to be called Tatul as it would  be for an English speaker if they learned that someone’s legal name is Daddy. Except I don’t think Tatul is used as a name in Poland these days, or had been used ever at all, because it’s an Armenian name. It was just mentioned in that calendar because there’s apparently one saint Tatul of Armenia. I’m not sure that info is even correct or reliable because I could never find anything about him   anywhere else other than that website, but from what I can recall, it said that he was some sort of Armenian hermit who lived with two other men in one hermitage, one of them I believe was called Thomas, and the only thing they ate were some kind of leaves, , and they’re still much venerated in their home country and their feast day is 30 September. The author, or whatever other source he got that from, was guessing that perhaps it actually does come from the word dad in some language and claimed it to be a variant of the Latin name Papulus, but years later I read on Behind the Name that « Tatul » is a word in Armenian that means « paw » and I’m way more inclined to trust BTN here, even though « paw » seems like a weird name meaning to me. . Even when I went through the whole calendar in a year, later on I would still often consult it when looking up some names or was in search for a really odd and clunky rarity for a story or something, I really liked that website. 

   Sadly, some years later, the host of this website decided to shut down and thus so did the calendar, and I suppose the author didn’t have either the knowledge or energy or will to move it somewhere else. Now I feel a bit regretful that I haven’t archived it somehow for my personal use, but I guess back then I didn’t even know how I could have done that efficiently, and anyway I don’t really think I’d need it as much these days, it’s just a bit of a bummer that it’s completely gone. 

   Another thing that comes to mind, not so much a website but an app, although it still did have its own website which you could use to access some of the app features and it is no longer a thing either, was Klango, a sort of network community for blind people. The project was Polish but the community as such was very much international. It started out as an app containing several audio games, and then gradually morphed into something that I guess could be compared to what we currently know as social media, plus some more gimmicks. It was self-voiced and had a lot of sounds that informed you where in the app you are or on different things that were happening in it or what you were doing and people could create their own sound themes. You could exchange messages with people, write your own blog, which was really easy to do, as well as read the blogs of other users (people from outside the Klango world could see your blog too but it was unlikely to just pop up in Google so you had to give people the URL if you wanted to have any external visitors and I guess it wasn’t overly appealing graphically, it had all kinds of forums, including voice forums, groups in which you could talk about various topics of interests, you could create and take part in polls, add people to friends, change your status, have an audio avatar, create notes and collaborate on them with people, you could have a board like on Facebook etc. On the other hand, it also had a built-in media player, with a huge catalogue of radio stations, podcasts, a YouTube browser, Google, and if you really wanted you could browse the Internet with it, which had its upsides as the built-in web browser was super simple and accessible, but also stripped websites down to the bare minimum so a lot of features on websites didn’t work or were clunky, and it didn’t even have such basic options like being able to type in text fields, so logging in anywhere wasn’t an option. You could also manage files on your computer with it, listen to audio files, convert them, all kinds of stuff like that. The whole thing was controlled exclusively with keyboard, no mouse, and you could make it so that it wouldn’t show on the screen whatever you were doing, which was a cool privacy option if you wanted to do something discretely or something that your parents might not have been happy with you doing perhaps, 😀 people would just see the Klango Logo or optionally if your sound theme had any visual stuff to it it could show up as well. So it was a really fun place for me when I was just more or less starting to acquaint myself with computers and the online world as it was incredibly simple to use, you could perhaps even say too simplistic in some aspects. I met loads of people there and learned a lot of things and I generally feel quite grateful to Klango for all that. However, not very long after I joined, the authors decided that they’re going to ditch Klango in that they wouldn’t be developing it anymore. So while the community was more or less active for several more years, many Klango features were gradually becoming unusable, from YouTube and Google to blogs to all kinds of other things. I clung to it for a very long time, because I still talked to some people only on there, and I liked to use Klango for some of my online activity as a way of simplifying things. At some point one of the members of the Klango community decided to make a similar app that would actually work, which initially was a bit like a Klango copy but over time developed its very own look and personality, and I eventually joined it as well, but still used Klango or at least had it running somewhere in the background. But by then, I was feeling already since quite a while that, actually, I would like to go somewhere out. Outside of our blind community, where everyone knew me in person, often from school or something like that, and practically often the only thing that we really had in common was that we were blind. Of course it wasn’t like while I was there, I couldn’t be anywhere else, but I was feeling the need to distance myself from that. I know it works for a lot of people but when I was thinking about it I just couldn’t imagine staying like that my whole life and always mingling with people from school or thereabouts. I liked many of them and Called some friends, but none of that felt like any sort of deeper friendship. Initially I felt awful for even thinking about wanting to do this and never thought I actually could, because how do you even explain that without hurting people and not making them take it personally, but I talked about it with my Mum, Sofi and a few of my pen pals and they all said that I should do this. So one day I just simply left both those communities. I still felt awful initially, and whenever people like my Dad or my grandma asked if I still had contact with so-and-so from school or from Klango and knew how they were doing, and I said no, I’m no longer in touch with people from there, they were like « :O :O :O But why’d you do that!?» and seemed to think it was really weird or even really bad. Or I’d tell them something about someone online and they’d be like: «Are they blind?» That usually wouldn’t be the case but they seem to think that if you’re blind, you should mingle with blind people a lot or something. When my friend Jacek from Helsinki came to my 18th birthday party, my godmother, whom I told a lot about Jacek beforehand, was extremely surprised when she learned that he wasn’t blind and couldn’t get over it for the whole party and kept asking me why I didn’t tell her that. It hadn’t even crossed my mind to have to specify that, lol, and Jacek found it very amusing and regretted that he didn’t know in advance that she thought he was blind so that he could have pranked her. Perhaps my family make such assumptions precisely because I did mingle almost only with blind people as a kid. I do get it that it can be very useful because otherwise you may not know about things that could be important/relevant to you as a blind person, for example you could learn  by word of mouth that there is some funding that you could apply for currently, or you can help each other with things relating to blindness, but I am aware of that possibility and I try to stay on top of things myself, plus obviously it’s not like I’ve completely cut myself off from the blind world as a whole, I am still on various mailing lists for the blind, read blindness-related websites or those about assistive technologies etc. etc. and I don’t really feel like I’m losing much at all. I no longer feel guilty either, as I think everyone feels the need to move on from something sometimes, even if this something had been a large part of their life before. I’m pretty sure that if I didn’t ditch Klango and all that, I wouldn’t have my current Mishmashy English blog, probably wouldn’t have a Mac now because this new app that people use instead of Klango now is only on Windows, and wouldn’t have done a lot of other things, because most of my time online would be likely spent there as always. Still, I do feel a little nostalgic thinking of Klango, as, while it was lasting, it was a really good thing, taught me extremely much and showed me a lot. 

   What were such websites for you? 🙂 

Question of the day.

   If you were around before cell phones, what did you do while sitting on the toilet? 

   My answer: 

   Cell phones have become a part of my family’s life in about mid 2000’s I believe, that’s when my parents got themselves their first cell phones although I guess my Dad must have had some kind of work cell phone before that because I don’t recall him ever not having one. For me though, I only got my first phone in 2009, so practically I definitely was around before cell phones. What did I do on the toilet? Nothing I guess, except for the obvious stuff that you do there, which ensured that I did my business quickly without blocking the toilet for longer than necessary and getting engrossed in something interesting like my family routinely do these days. I would usually just occupy myself with my own thoughts, daydreams or some other kind of imaginings. Now that I think of it, I recall that when I was very little, I liked to imagine that I was giving birth to a baby whenever I was pooping. 😀 I often liked to compare some situations in my life or stuff that I was doing to something that I thought must be kind of similar but more interesting. So even though, unlike a lot of other girls at my nursery/preschool, I wasn’t particularly into babies, I still found giving birth more interesting and more spectacular than pooping. Other times, when my sensory anxiety got really bad, I’d just focus on trying not to get all consumed by it. A toilet is one of the places where it can be particularly problematic because it’s quiet and not particularly brain stimulating. Sometimes as a way of distracting myself I’d sing or talk to myself while on the loo, which worked barely but was always something. 

   My Mum often reads on the toilet, even now when she has a cell phone, we still have like a whole container in there that’s full of books and magazines that my family considers good toilet reads, which, unlike what you might perhaps think, isn’t always synonymous with light reads. It’s usually my Mum who reads them, though others sometimes do too, and if my Mum considers something a useful and important read for everyone, she’ll throw it in there. But personally I’ve never read a physical book on the toilet, I guess it’s less practical with Braille books. 😀 At some point, largely due to my loo fears, my Dad installed a radio in the bathroom, which would turn on and off with the light switch, and stranger people would often get scared by it when visiting us. So since then we could listen to the radio while in the toilet, or while having a bath. Later on, when my music taste has quirked and my grip on what’s trendy and popular with most people has started to loosen visibly, one of my school friends teased me that the only time I have contact with « normal » music is when I sit on the loo. FYI that’s totally not true, but oh well. 😀 

   Then when I got my first book player for the blind (a Polish one called Czytak NPN), I would sometimes take it to the toilet with me, either when I knew I’d be staying there for a longer while, or when I was particularly creepified, or just read a cool book that I didn’t want to unglue myself from. I still do the same with my PlexTalk, the book player that I use currently. 

   But honestly, even now it isn’t really some very strong habit of mine to go to the toilet with the phone. Sometimes when I’m alone at home I’ll sit on the loo with headphones on while listening to some YouTube video or podcast playing from the phone, but that’s not very often. Probably part of why I don’t do it as much as people seem to do is because for me it’s most comfortable to use my phone with an external keyboard/Braille display, and while I can do without one, it’s not quite as fun and things take me a lot longer to do, not to mention that typing on the screen is a nightmare for me and I totally don’t get how many other blind folks don’t have a problem with it, and no, Braille Screen Input (basically iPhone screen simulating a Braille keyboard) doesn’t do it for me, so if I don’t have to, I don’t do it. I am more likely to take my phone with me when having a bath, which is not too often as these days we do showers more often. Then I like to play music from it, because while we still have a radio in the bathroom, I think it’s nicer to listen to something that actually has some significance to you while having such a fun thing as a bath. Sometimes, when I’m particularly creeped out, or just want to have a really chill, long bath, I even take my Bluetooth speaker with me and hang it on the bathroom door and play the music through it as that’s obviously a lot nicer than through phone speaker, but that would be super unpractical for just going to the loo. 

   How about your toilet activities pre cell phones? 

TToT (Misha, Traditional Latin Mass, pillows, etc.)

   I thought that today is a good day for writing a gratitude list. I always try to include things that I’m thankful for at least once a week  when writing in my personal diary, but I think I haven’t written a grateful blog post in quite a while and I feel like it today. I’m linking up with Ten Things of Thankful. 

  1.    The fact that I’m feeling well physically. My family – that is Sofi, Dad and Olek – have been mildly sick with something and while it isn’t serious, no fever or anything, it seems to be dragging on for quite a while, especially for Sofi. So far, I’ve been spared. Jack the Ripper is visiting me this week and I had two migraines, but overall I’m feeling well. 
  2.    Misha spending a lot of time with me, particularly at nights. Misha has recently taken a particular liking for my armchair and sleeps at night either there, or on my bed as usual. I always love it when Misha sleeps with me, his mere presence instantly creates such a pleasant, peaceful, Mishful atmosphere. But this week I’ve been particularly appreciative of it as I’ve had some yucky dreams and night time anxiety, and waking up in such Mishful atmosphere makes things so much easier. 
  3.    That I’ll probably soon be able to get a new cable for my scanner. I haven’t been scanning anything for a long time, because it’s such a huge hassle and difficult to do well on my own. But now that I’m attending Traditional Latin Mass, I sorely feel the lack of quality Catholic books in accessible formats, especially older ones, and feel almmost envious of my Mum who keeps buying herself all kinds of such books. They are very useful for prayer, reflection or even simple reading as a form of deepening your faith, and I always have to go looking for things like that on the Internet, which in the end means that what I find won’t necessarily be traditionalist at all. I have always struggled with focusing during prayer, and not having materials to help me out and help my mind go in the right direction makes it even more difficult sometimes. Even the missal that I have in epub is a lot shorter than the one my Mum has as a physical book, and I’m limited here anyway because I can’t just take my Braille-Sense with the missal with me to church like all the other people take their books because that would be super unpractical, I have to read it before the Mass at home. So my Mum has wanted to help me out and scan at least some of her huge collection of these “saintly books” as she collectively calls them for short, but then we couldn’t find the power cable for the scanner absolutely anywhere, and it appears to be such a niche cable that it can’t be replaced with just any average cable. So Mum phoned the company that distributes those scanners and asked if there’s any way of getting another cable or something, and they said that next time they’ll be ordering from the company that produces those scanners which is in the UK, they’ll order a cable for Bibielz as well. So Bibielz can’t wait for it and for all them saintly books. 
  4.    Speaking of TLM, I still feel so incredibly grateful to God every time I think about it, that we’ve been able to become part of the Catholic Tradition and attend this beautiful Mass and generally change our lives thanks to this. It will soon be a year since we “converted” as my Mum puts it and Mum and Sofi and me often reflect on how much things have changed for us since then, not even only spiritually but generally in how we think, and laugh at the difference sometimes. 

   My pillows. Yeah I always love my pillows, but today is a good day for being grateful for them because I have new pillowcases. Not for the regular, big pillows, but two smaller ones, one of which I put on top of my big pillow when I sleep and keep my PlexTalk  under it, and the other is for all kinds of unexpected needs and situations and for Misha when he wants to sleep in the bed rather than on it as he usually does. And then I also have three larger, additional pillows just in case, haha, but that’s not relevant here. Anyway, the pillowcases I had on the two, smaller pillows got badly torn as I had them for ages, and before I got some new pillowcases for these  pillows, for some time I slept without an additional pillow and that sucked because I’m totally not used to it – my Dad only sleeps on one, flat pillow and now I’m not surprised he has sleep apnea, I think it wouldn’t take long for me to develop it sleeping like that all the time – so then I got a different pillow, which was bulkier than the one I usually put on top of my regular pillow, so then in turn it felt way too high, and it muffled my PlexTalk quite effectively. So I was really happy and relieved when I finally got brand new pillowcases  and could sleep with my actual pillow. The right or wrong pillow can really make a huge change. 😀 

  1.    That I can be helpful for my Mum with her iPhone. I really like it when I can be helpful for people, and while my Mum likes her iPhone and says that it is indeed a lot more comfortable than any of her previous Android phones, she also needs a bit of help or a tip on how to do something with it quite regularly. Even if I don’t know how to do something, it looks like it’s easier to research it for me than for Mum. Perhaps because I always automatically do it in English and there’s more info on most topics in English online. Funnily enough, since last week, she’s been saying that perhaps she’d like to buy herself an Apple Watch, because it would make it easier for her to take calls when out and about and she hopes it would be better for measuring how many kilometres she runs and bikes. I think it’s funny at what pace we’re becoming the Apple family. 😀 I am very seriously planning to sway Dad to the Apple camp by the end of next year as well, just cus why not? Olek will be all alone with a Samsung. 😀 I know it’s beyond my abilities to convince Olek as his choice is fully conscious and informed, and because of that I wouldn’t even want to change it as it wouldn’t make too much sense. I already told Dad how Apple has CarPlay and that seems to have appealed to him as a lorry driver. 
  2.    doing relatively well mentally. July and August were awful for me with loads of what I call sensory anxiety for the purpose of this blog, which was going up and downn a lot and which was mostly caused by an unusual amount of sleep paralysis episodes that I had at that time and that they also were quite unusually intense and long, so that things felt quite out of control and I had a hard time functioning normally. Lately things have calmed down significantly and for long enough that I think I can say this month has been better, even despite horrid dreams and anxiety at night afterwards that I had earlier this week. 
  3.    Lots of yummy fruit. We still have raspberries in our garden! They haven’t been very sweet this year, but are still good, and it’s always nice to have home-grown raspberries rather than have to buy them from someone/somewhere else. We also have loads of pears, more than we can eat, in fact, so Mum is making some sort of mousse from themm or something. We also have a lot of apples (as befits the Apple family lol). And even blueberries, though these aren’t home-grown, Mum just bought a lot of them a while back to freeze. So we eat a lot of fruits and it’s really nice that we can do it. 
  4.    Chilly weather, which is chilly and cosy enough for me to be able to wear my fluffy overalls in the evenings again. For me that always means that autumn has properly started. 😀 
  5.    My language progress. It hasn’t felt like anything huge, but I’m always grateful even for a very little bit that my brain absorbs. Also what I feel particularly happy about, and what is particularly tangible for me, is that because of my Norwegian learning, I can feel my Swedish strengthening significantly as well. I was kind of worried it would be the oppposite and that I’d end up having a jumble of the two and would regret my silly out-of-the-blue affair with Norwegian. I’m so glad that it’s not the case, as well as that, for that matter, my relationship with Norwegian has definitely become a steady one by now, as we’ve been together for over a year now. 

   How about you, lovely people? What are you grateful for this week? How has it been for you overall? 🙂 

Question of the day.

   What do you wish you were really good at? 

   My answer: 

   I kind of wish I were better at all things technology. I’m not particularly into it, only to the extent that it actually helps me, which is quite a large extent given that I’m blind, and as I always say an average blind person who wants to function well and do a lot of daily life things on their own has to have somewhat more of an idea about technology and how to effectively use it than their average sighted counterpart. I’ve heard from quite a few sighted people who don’t have much of an idea about it, including my Mum, how tech savvy I apparently am, in fact my Mum’s been saying it a lot lately probably because I’ve helped her set up and learn her new iPhone and she even said that she admires me for having transitioned to Mac completely on my own and learned it so quickly. To be honest, I’m still kind of surprised by it too, even though like I said I’m no power user or anything. 😀 But generally, despite my lack of deeper interest in technology, I sometimes think it would be really useful and helpful if I were able to do more advanced things with it, as it would consequently help me with other areas of life. For example, well now I obviously don’t use SAPI (the Microsoft speech API) since I’m on Mac, but I did back on Windows and SAPI5 had broken for me several times, and if I were more competent in this field, I could have been able to fix it by myself, rather than ask all sorts of people and have to explain to everyone what SAPI is, and that would be really neat. Or I could make a lot of things potentially easier for myself. Or help other people more. Or be some sort of accessibility advocate, as online accessibility is something I obviously care a lot about since it concerns me very directly but it’s difficult to tell other people like app developers about it when they do something wrong accessibility-wise because I don’t know what to suggest them to make it right, or sometimes even how to describe the accessibility issue so that it would make sense to a non-screen-reader user. Or, going back to speech synthesis, I’ve always wanted to have a speech synth off my Mum or Sofi, and now there are quite a few possibilities to create your home-made, decent-sounding speech synthesiser, without having to go bancrupt and having a professional company do it, but to someone like me, it sounds extremely difficult and cumbersome, and not really doable at all. But, like I said, I don’t really have a strong enough interest in technology and related stuff, and I guess you have to have a particular type of brain and way of thinking for that, kind of like for math, so I’m not really determined enough to actually try and become more tech-savvy. 

   What’s such a skill for you? 🙂 

Question of the day (8th September).

   What are small problems you have daily? 

   My answer: 

   The first thing that comes to my mind is definitely peopling. I have all kinds of problems around peopling, big and small. But, to mention a small one, I always have a problem deciding if saying or doing something when interacting with someone is okay. I always overthink it massively and end up making the conclusion that either way it can potentially be seen as rude or something like that. Like today, I was thinking a lot about an interaction I’ve been having with someone, and had a bucket load of dilemmas. Should I ask them this question, or will they think it’s daft or intrusive? But if I don’t ask anything, it’ll seem like I’m generally uninterested and don’t care. How should I respond to this? Will this message even sound coherent to someone else than me? etc. etc. etc. All kinds of things. That’s why I say that online communication doesn’t always necessarily make it easier for me to talk to people. Especially if I write to someone new, I proofread a flipping three-line message ten times, and then sit in front of it for five minutes scared of sending it. Other times, I tell myself I think about it too much and no one does it and I should do whatever my gut feeling tells me, and only ruminate afterwards, and often regret something as well, because as much as I generally find my intuition to be very helpful, it isn’t necessarily so helpful when it comes to interactions with people, so if I go with my gut feeling I often end up either revealing myself more than I’d like or seeming very stiff. It’s not always what people will think of me type of dilemmas but also what’s appropriate more practically, like what people generally do in such and such situation, or finding a sort of balance when interacting with people so that you don’t do something too much or too little. So what I often do is I ask my Mum for advice and ask her all kinds of dumb questions. She isn’t always able to help, because she hasn’t always been in the same situations or because she just doesn’t get my perspective, but very often she can help at least a bit. When my  friend Jacek from Helsinki was still a part of this world and when we got a bit closer to each other, I would often also ask him, because he was an extreme extrovert and always knew what to do when peopling and was very successful at it, but at the same time he could understand my difficulties fairly well despite that, I would even ask him about in person peopling and whether something I did looked alright or not so much, or whether something wouldn’t draw too much attention etc. and he’d generally have more distance than my Mum so his input could be very valuable. I often also learn about such things from books and observing people. But while it is all helpful, I still deal with a lot of problems around peopling every single day. Many of them I’m so used to that I don’t even consciously think about them very often as problems, but I probably would if I, say, had a job that would involve me interacting with people a lot, and would require what they call soft skills these days. 

   How about you? 🙂 

Question of the day (7th September).

   What’s your biggest high school regret? 

   My answer: 

   That would definitely have to be that I went along with my Mum’s idea that I should pass my finals in a school for the blind. I went to a mainstream high school, so called high school for adults which meant we had classes only some days a week and in the evenings, and it was generally a lot less demanding than a regular high school, you didn’t pick your main subjects or anything like that. I didn’t have to go there and could pick just a regular high school, because I was just nineteen at the time and I was going there straight from secondary/junior high school/whatever other equivalent  you have in your country before high school, and it was very unambitious of me, but I went this route thinking it would be a lot less difficult for me practically and less stressful in general, with all the peopling and other stuff that I didn’t really feel I needed. In the end it went even better because some teachers were so scared of me that they embraced my suggestion that I would just homeschool myself at home and they would send me control assignment topics and exam dates and I would send them control assignments and only come to school for exams every half-term. That worked really well for me also because a lot of what my classmates did was based either on slides or textbooks, and I obviously couldn’t see the former and didn’t have the latter in an accessible format, so it felt like a huge waste of time. This way I was also able to have more hours with my math tutor, who was a special ed teacher for the blind and deaf, since as you all probably know by now I sucked at math and my school teacher had no clue how to teach the subject to a blind student, especially one like me hehe, despite her best intentions. Despite loads of hours of tutoring that I had, lots of homework that I got from my tutor and my desperate and mostly fruitless hours of trying to learn it myself somehow, I was pretty sure that I was going to fail my math finals pretty miserably and my Mum was worried about it too. So she thought that perhaps it would be easier for me if I could do them at a blind school. Not the one that I used to go to, but one a bit closer to us. I knew that when you have to have an official school exam and have some special educational needs, then it has to be adapted for your needs, but we were slightly worried if it’s going to be the case because when at some point the deputy head asked me if I’m going to take the finals and I just casually mentioned that I’ll need to have them adapted, in Braille and all that, she was absolutely flabbergasted. Plus, I thought I’d generally feel safer with the math exam specifically when I had competent people in the committee, even though they obviously wouldn’t be able to help me with the exam itself or anything like that.

   We were even more enthusiastic about it when it turned out that, in that school, unlike my previous blind school, each student writes their exams in a separate room. It can feel awkward, especially if you’re like me and always finish exams super fast, whether you’ve done it really well or really badly, because if I know everything, why would I need to take an eternity writing it, and if I don’t know anything, why would I sit around wasting everyone’s time pretending to do something? It’s even more awkward, because, very unfortunately for me, when you have special educational needs, you have more time for doing the exams. So whenever I had some official exam and said I was finished, everyone was all like: “Already?! Are you sure?” sounding extremely surprised and kind of suspicious. But if I sat with it for longer just to seem like I’m still writing, checking it for the 30th time in a row, the time flows agonisingly slow. Especially if you have a zombie day like I had on the day of my Polish final, or when you get a migraine like I got on my math final. 😀 But, overall, having a room and a committee just for yourself can also feel better than being in a room with loads of other people, especially if everyone writes on a Brailler and these tend to be loud-ish. I just generally had a good feeling about it, or perhaps I decided to trust Mum’s feeling, despite I actually had quite a bad experience with that school from a couple years earlier. Namely, after I left the blind school that I went to for most of my education, there was a few months of limbo that I had and we didn’t really know what to do with my education further except that I wouldn’t go back there. So my Mum got an idea that we would go ask in this blind school closer to us if they’d perhaps be able to help somehow, though we weren’t even sure how, but perhaps a bit naively thought that something along the lines of letting me use their educational resources or sending a teacher at least once in a while to help me with schoolwork. They said that, hm no, this isn’t something we do, and then the situation had a yucky twist because they all suddenly started to persuade me that I should join their boarding school. Well, I certainly didn’t leave one boarding school to replace it with another, that generally has worse reputation among blind people from what I know of, so I was absolutely adamant that I was not going to do this, but they kept trying to convince me and before I knew it there was a whole team of people of all kinds of professions surrounding me and telling me how I need their school but just don’t know it yet, and I was feeling increasingly like I was about to go crazy. It’s a frequent theme in my nightmares, both regular and sleep paralysis ones, that someone tries to convince me to do something or wants to do something to me and I keep telling them that no, for fuck’s sake, I don’t want it, yet they keep shoving it in my face and then end up either doing what they want or forcing me to do something, so it always makes me feel kind of threatened or something when this happens in real life, let alone a situation like that, I seriously thought I was in a dream. 😀 What was worse was that they ended up almost convincing my parents, and I still had a few months until turning eighteen so when we finally left, they were feeling very much that I should go there. Rescue came to me from the most unexpected direction I could imagine, and my grandad also deserves some credit, but that’s a different and unrelated story. 

   Going back to my finals, in the end, I donn’t think it made a substantial enough difference for me that you could really call it a difference at all that I took the exams in that school. Especially that I ended up failing math anyway. And it was all extremely stressful not only for me but also my parents, who had to drive several times back and forth, as this school is several hours drive away. I guess only Sofi enjoyed it and whenever the topic comes up, she always says how she’d like to go back there again because she has nice associations with that time and enjoyed sleeping in a hotel when we decided to stay in that town one night. Some bits about that experience were kind of triggering for me and in particular dealing with their “amazing” headmistress, I don’t think I’ve ever had to do with an equally or more toxic and just all round unpleasant being in my life, almost like an embodiment of Maggie my inner critic, even their names are etymologically related. Ever since then I always hear Maggie speak in her voice. 😀 If she’s like that with her regular students, I feel extremely sorry for each one of them and wonder how much counselling they’ll need later on in life, they should get compensations or something. 

   How about your high school regrets? 🙂 

Question of the day.

   What’s one thing you still prefer to do the old-fashioned way, regardless of technology and why? 

   My answer: 

   I’ve talked about this before, but definitely reading books. And no, obviously I don’t mean that I prefer reading physical books over ebooks/audiobooks, that would be cool if I could actually afford it and have enough place to store all those books, because I’d love to be able to read physical books, but it’s inconvenient, clunky, and either limiting when you get them from a library, because Braille books are costly and slow to produce so the available books are FAAAAR fewer than standard print, or it’s super expensive if you’re desperate enough to order a book to be printed just for yourself. 

   What I actually mean is that I much prefer reading books on a specialised device for the blind like a book player or a Braille display, rather than on the phone, which seems to be the most popular option right now among blind people. Specialised book players are no longer particularly trendy and aren’t even produced as much as they used to be, simply because people are turning to phones now which are cheaper than specialised devices, and it doesn’t pay off for people to buy a specialised device for double the price of an iPhone when such a device has a lot fewer functions, even if oftentimes the functions it does have work better than on an iPhone because it was made to do a few specific things rather than everything possible. Book players are more of a thing with older blind people, like such who have lost their sight later in life and don’t necessarily feel up to learning how to use an iPhone blindly when they never even had a desire to that when they could still see. Their advantage is that they are obviously always accessible, and very intuitive and easy to use. Braille displays/notetakers  are of course still in demand because people use them in connection with their mainstream devices like a phone or computer, but still I guess few people use their displays like that they just put an SD card in them and read books directly from them, without connecting to anything, like I do. 

   The reason why I prefer reading books the way I do is very simple – because that’s what I’m used to and because that is most comfortable to me. – My current book player that I’ve had for some seven years (although not the same copy). While it is still sold, its firmware hasn’t been developed in a couple years and will no longer be, so it has lost some of its features already. For example  sharing files between it and a computer over a network folder because the protocol it used for that is outdated and no longer secure and no self-respecting computer will let you do that anymore. Which is generally a bummer because, yeah, you can of course theoretically connect it via USB like anyone sane would, except it’s not the best idea because when you unplug it, it just freezes and dies, and you have to take the battery out and put it back in, and if you need to exchange files on it regularly it’s not cool because sooner or later you’re going to damage the battery holder from constant playing with it. This has been a bug since forever and I know a few other people who’ve had it, but it never ended up being properly solved. So now I just use an SD adapter instead rather thann connecting to the PlexTalk as such when I want to add new files. But worse yet is the fact that it has lost support for Audible, because Audible ditched its older audio format. I was disconsolate because the sole reason for why I chose PlexTalk over a much cheaper device of its kind (which had the Jacek voice in it unlike PlexTalk!!! 😭) when I last got funding was because PlexTalk is the only one I know about here in Poland that supports Audible, and back then Audible was my only source of English books except for BookShare, and then after a few months there’s no Audible. I wrote both to Audible people and to Shinano Kenshi (PlexTalk) people but Audible people very gently expressed that they don’t really care, and Shinano Kenshi people wrote to me like half a year later (because they’re doing other things now, duh) saying that, yeeeah, they could, theoretically, maybe, add the support for the new format (which has also been around for quite some time already and it’s not like Audible has suddenly introduced a new one and ditched the old one simultaneously) but it doesn’t really pay off, to sum it up shortly.

   In the meantime (between Audible ditching its old format and Shinano Kenshi responding to me) I finally got myself an iPhone, and part of my motivation was to have easier access to Audible, and to finally get used to read like most people (using the app Voice Dream Reader) because it also has the Jacek voice in it and because I kept hearing how it’s so so cool and as good as a book player. 

   I tried several times to make this transition, both with audiobooks and with ebooks, but it just doesn’t work for me. With all its annoyingness, I like PlexTalk because it’s small, so I can put it under my pillow and read in bed like that. It doesn’t really feel like an option with a phone, I mean I could theoretically, but, uh, who sleeps with a phone under the pillow. And the radiation and everything! PlexTalk has Wi-Fi, but I don’t use it anyway, so it’s always turned off for me, and even if it still emits some radiation it’s never going to be nowhere near that of an iPhone. Or I can read much more comfortably in the car or a public place. With an iPhone, I would have to also bring  headphones, and I’m a control freak and don’t like having my hearing limited while being around other people in not very familiar places or situations, and with PlexTalk I can just keep it at a low volume near my cheek and have everything under control, no one hears it but I do perfectly fine. I’ve done that for ages and it’s just the only thing that feels right. Also if I’m reading in bed, I’m used to also having some music or radio quietly going on in the background, because a softly speaking speech synth alone going from a mini mono speaker doesn’t fulfill my need for sound entirely, and I use my phone for the music/radio, so I can’t simultaneously use it for reading because it would be one big chaos. Unless Apple one day introduces the possibility to have multiple audio outputs at the same time, and regulating the volume of each separately, then I might reconsider it once again.

   And another thing is, I am just not crazy about Voice Dream Reader at all. I don’t want to say I don’t like it, because i can see it is generally a very good reading app compared to other reading phone apps, and it’s amazing that it exists because I still do use it sometimes for language learning and many people find it very useful. Oh yeah, and there’s Jacek, I even purchased him in the app, and I also bought a Welsh voice because I have none on the computer anymore after it got lost irretrievably just like Jacek so I read Welsh stuff with Voice Dream Reader out of necessity because I myself am a very slow Welsh reader, even though it’s a south Welsh voice as opposed to North Welsh which I’m learning, and reads some colloquial things really oddly. In my opinion, Voice Dream Reader doesn’t work very smoothly with Braille, it keeps losing focus or throws me into random places in the text when panning (moving through the lines of Braille) and Braille reading like that is just really cumbersome and annoying. . And even if you don’t read Braille but just listen to speech, navigating within that book isn’t quite as smooth and precise as it is in all the specialised devices that I’ve used so far, and I’ve used four different kinds in my life. That’s all probably because Voice Dream Reader isn’t really an app for the blind, but generally people with all sorts of print disabilities so it doesn’t really cater to any of these disabilities in particular I guess but just tries to work for everyone.

   So yeah, I much prefer either my PlexTalk, for reading with a speech synth, or Braille-Sense (my Braille notetaker) as a standalone for reading books in Braille. 

   My eccentric reading requirements, unfortunately, meant that I had to figure out how to strip DRM’s from Audible, alongside all sorts of English-language ebooks from major retailers (really people, why don’t you just use watermarks? :O ) which I feel very sad about that I have to do it, but if they don’t want to be like properly inclusive… Perhaps at some point when/if the Marrakesh Treaty will become a thing in practice everywhere I won’t have to buy mainstream books anymore. Or regarding Audible alone I’ve heard that there is/is going to be some new device that actually supports the enhanced Audible format, so when my PlexTalk stops working and I’ll have a good gut feeling about that other device in general I’ll happily buy it instead, because it’s not like it’s some extreme fun spending an hour stripping books, the more that I have to do it on Sofi’s PC because I don’t know of a way to do it on Mac that would be both accessible and secure and that’s an inconvenience for us both. So let’s hope that Audible doesn’t come up with a new format until my PlexTalk dies, lol. 

   How about you? 🙂 

Question of the day.

   What do you spend your money on? 

   My answer: 

   As you regular people on here probably know by now, I am in a very lucky and privileged situation that, despite being disabled and as a result on low income, I have the luxury of being able to spend my money mostly just on the things I want, rather than the things I need. This is because I live with my family – my parents and my siblings – so we share expenses for stuff like bills and food and such between each other, except obviously for Sofi who is a kid. For example I pay for electricity because I use it loads more than anyone else here, or for all Misha’s food, though that one is quite obvious really because as much as Misha is all of us’ cat and we all feed him and stuff, technically it’s me who owns him so it’s like logical that I should make sure he has everything he needs, and Olek pays for water or buys  the every day groceries or at least funds them. That means that I don’t have to care for all the bills and food and possibly even rent and things like that myself and this way, I don’t really feel any financial strain like I’m sure I would if I were living on my own. I do have a job at my Dad’s for whom it is lucrative to employ me because here when you employ a disabled person, all the costs of it that you have to bear are covered or partly funded by the State Fund for the Rehabilitation of The Disabled, like for adapting such employee’s workplace, trainings etc. And then you also get funding for the employment of such individuals. So I earn the minimum wage at my Dad’s and receive several kinds of disability benefits which I am eligible for. I mostly try to save up as much as I can, because I have no idea how long my Dad will be able to employ me and what my future will look like in general. But my Mum rightly says that it’s kind of irrational to only frantically save up for the future when you don’t even know how long you’re going to live and, just like I said, how that future is going to look like, perhaps something major is going to happen in the world of economy and all savings you’ve accumulated won’t matter anymore. Therefore I also use that money to satisfy all sorts of my whims, bigger and smaller.

   So, aside for spending my money on obvious necessities and mundane things, I have quite a few subscriptions – for example things like Spotify which I can’t imagine using the free version of in a serious way given that I listen to music at night, and YouTube which I subscribe pretty much solely because I hate not being able to lock my screen while watching something, which is absurd given that I’m blind and it’s just a waste of battery life and everything, and I share these subscriptions with my family, or Mum and Sofi more exactly. I also have a subscription for the website where I do my Welsh learning from and a couple other things. – I buy loads of books. Actually other than the recurring expenses, I think I buy books most often, especially ever since I’ve started to seriously read English books because English books are easier to get. I do use our Polish blind library as well as BookShare which is an American library for people with print disabilities, and I typically look for free versions of books there first but I still end up buying a lot of books anyway. I still haven’t found a good source for Swedish ebooks/audiobooks that would be both accessible and available for people from outside of Sweden, but if I find one I’ll definitely be spending even more on books but I don’t really feel guilty about it or anything like that as I think books are a great thing. 

   Occasionally I’ll also buy music but this has to be really good for me to do it, so it’s usually only of my faza people whose music I much prefer to always have available offline. 

   I buy a lot of food that I like but no one else here does, be it regular food or candy, and I buy lots of snacks for my poor, unhappy Misha whose only real joys in life appear to be food and sleep. I’m not a huge fast food eater in that I don’t like a lot of fast food, but once in a while I’ll order a KFC takeaway for me and Sofi especially if I want to get something out of her or if there’s nothing more interesting in our own fridge at a given moment. 

   I love to expand my gem stone collection and happily invest in that if only I am able to, though it is not a cheap hobby so it’s not like I buy a stone every week or even every month, and also a lot of stones in my collection I have actually gotten from other people like my Mum or my grandad or my math tutor whose brother used to collect crystals and minerals as well, or like that one time I got a free sapphire ball (her name is Cecilia as in Cecilia Lind) from a minerals shop owner in Stockholm. 

   I buy relatively a lot of tech, , although I also get fundings for a lot of it if I am able to because in particular specialised devices for the blind also have very specialised prices. But like last year I bought myself a MacBook Air for Christmas, and earlier that year I bought myself an iPad as well, and that felt like one huge whim even though it wasn’t really, because originally I didn’t really plan to buy both of these in such short time but felt a bit pressed by various external circumstances. In the end I’m really happy with it though and I’m really glad with these decisions. Then just recently I persuaded my Mum to also make the switch to Apple and join Sofi and me, and we bought her an iPhone with Sofi for her name day, but obviously Sofi is a kid so her input was more symbolic than anything. Of course I totally didn’t mind that, because as much as I generally find the whole presents thing super awkward, I do like giving people presents when I’m sure that they will like something and I knew that she would eventually love her iPhone and that it was worth it, and she’s already loving it. As I wrote in a recent post, Olek is going nuts because he once had, as he put it “Samsungised” our family, only for me to “iPhonise” them now, and he was joking that he won’t speak to us anymore. I liked my success with transitioning Mum to Apple and I thought that my goal for 2023 will be to drive Olek further up the wall and convince my Dad to make the move. That is going to be more difficult, but I’m curious to find out how good my persuasive skills are, and I really do think that if he could go past the getting used to phase, which would undoubtedly be a lot more difficult than with my Mum, he would end up liking it too. I’m not sure if I’ll still be up to funding it though, because unlike Sofi, my Dad isn’t a minor, and unlike my Mum, he isn’t unemployed and on caregiver benefits. When I was helping my Mum with the move, I was at the same time in need of a more accessible controller for my AC, because using it with the totally inaccessible remote was really getting on my nerves and I wasn’t really able to do that independently and efficiently. So I wanted to buy myself a smart AC controller that I knew was accessible because unlike my AC itself it’s compatible with HomeKit, which automatically makes it accessible, but it also wasn’t a very cheap thing. My Mum offered that she could buy it for me which I gratefully accepted, but she’s been borderline broke for quite some time now so eventually I decided that I might as well buy it myself since I am not broke and I’d have a lot more use of it now than in the autumn or whenever my Mum will become un-broke. Mum helped me set it up last Friday and it works really well for me, I felt so happy being able to ditch the old remote. I am all the more relieved to have done it that, as much as it hasn’t been too hot for over a week, we’re said to have some major heatwaves now in the first half of August all over again. 

   And I also spend some money on supporting people or organisations who do something that I support or really care about. This has changed over the years because there are so many people who do great things and so many people who need support or help or stuff like that, but currently both my Mum and me are patrons of one Polish Catholic YouTuber who talks about stuff that we care about on his channel and he’s actually become a Traditional Catholic a couple months before our family if I remember correctly, and he’s from our area, so now that we attend exclusively Traditional Latin Mass and so does he, we’re fellow parishioners and my Mum talked to him and to his wife once. He’s no celebrity or anything but it’s kind of funny to get to know like that someone whom you’d previously watched a lot on YouTube, especially for Sofi. 😀 Other than that, even though I’ve moved pretty much entirely from Windows to Mac OS around January, I still donate to support NVDA – the free Windows screen reader which is the screen reader that I have used on that system most extensively. – Even though I now only use Windows on Sofi’s computer to convert my books to formats that actually suit me because I still haven’t figured out an easy and accessible way to do that on Mac, I still do use NVDA on that, and even if I hadn’t, it doesn’t mean I automatically don’t care, I think it’s very important for it to develop because it’s a very good screen reader, and it’s free, and good and free is a fairly rare combination where technology is concerned I suppose. 😀 

   And that would be about it, I think. 

   Now, how about you? 🙂 

Question of the day.

   Hey all you people! 🙂 

   What are things that are seemingly easy for others but are very hard for you? 

   My answer: 

   Oh my flip, do I really have to list all of them now? 😀 It would have to be like a whole series of posts – “Things That Other People Can Do, But Bibielz Don’t Have a Clue How, in 50 parts. – 😀 Well I think I’ll just mention a few, I’ve just had a migraine and my brain’s still a bit spacey from that so I don’t feel like writing a series, plus really who needs a whole series of all the things Bibielz can’t do. 😀 

   So yeah, the obvious thing would be peopling. I’ve no idea how people do that and know what to say when and have the right emotional reactions to things and all that and how it’s not utterly draining for them. Logically, I’d think that if they can do peopling better than me, then they should be all the more drained by it, perhaps except for people like my Sofi who really are extreme extroverts and simply love being around people and talking to anyone and stuff, but most people are somewhere in the middle I guess, so it’s weird for me that their brain batteries have so much capacity. But yeah, I’m really quite clueless about how to engage with people, and so if I want to do that well, I often ask my Mum for advice, and while she can be very helpful, it often blows her mind that someone has such weird dilemmas around peopling as I do. And no, it’s not just with some random stranger people, it’s with all people really. Which is one part of why I find it rather difficult to form closer relationships that go beyond some rather superficial level. 

   Then there’s math. Although, after a lot of fighting, particularly on my Mum’s side, I did get a certificate or whatever that would be called in English saying that I have dyscalculia, for some reason it’s generally not a thing to diagnose blind people with dyscalculia and I don’t really understand why. I mean yes, a lot of blind people struggle with math and one reason why that might be is a lack/some degree of impairment of spatial imagination due to blindness, so perhaps someone figured that all blind people must struggle with math due to this so no point to diagnose them with dyscalculia on top of that if it’s blindness that’s responsible for their math difficulties. Except I also know some congenitally blind people who are really good at math, so it’s definitely not a rule and people who are better at it can’t be classified as exceptions from the rule because it seems to be a lot of such people. Plus, if there really is such a strict correlation between blindness and math difficulties that diagnosing people with dyscalculia makes no sense, then blind people should automatically have lowered requirements on all sorts of official math exams, just like dyscalculics/acalculics do, which is not a thing. Or we need some sort of additional criteria that would help in telling which blind people need those and which do not. Anyways, even though I got that certificate, and even though I often call my math difficulties dyscalculia because it’s kinda easier especially for other folks to understand, it doesn’t really look exactly like dyscalculia I think. It’s not like I can’t do counting at all or can’t understand stuff like time and such which is common among people with dyscalculia from what I’ve been told. I have no problem counting backwards, or doing some easy math in my brain, I even know the times tables to 100, which our 15-year-old Sofi still does not despite a lot of effort on her part so she laughs at me that I’m a total math geek compared to her lol. I usually had no problem learning theoretical math stuff at school and it seemed like I was able to understand it, but still applying it in practice was always difficult for me. With more complex calculations that have a couple steps or involve larger numbers, I’ve usually no clue what operations I actually have to do to get the result I need. I have that weird problem that when I read a digit, I read it right, but at the same time think of a completely different one, and it all gets really meddled in my brain. Same when someone dictates some digits to me, be it a mathematical operation, a code or whatever else really, I’ll hear the numbers right, but often end up writing different ones, and only realise that I did when something goes wrong later on. Or when I was at school we often had to read our homework aloud, and even though a boarding school staff would often spend several hours helping me do it the evening before and I had it done well, I would still often get a bad grade from it because I would read different numbers than the ones I actually wrote. It’s quite weird. I also have a problem using a calculator, not just because I often don’t know what operations to do to get the result I need, but also again because the numbers and all the plus minus etc. Keys get mixed up in my brain. Same even about digit keys on the computer, I have to really think when typing digits, especially in a string, because I usually make some mistake in there and then have to proofread and figure out if I did indeed and where exactly. 😀 So it’s funny actually that formally my job at my Dad’s includes making bank transfers. I wonder what would happen if he actually let me do that. 😀 I don’t even do my own transfers myself, I always ask my Mum, because I’m scared I’ll do something wrong and, like, send someone 3000 dollars instead of 300. Generally shopping is always a more or less stressful thing to me. I can deal with my own PIN codes and stuff like that because God bless Braille and the fact that digits in it are based on letters. What I mean is, if you want to write numbers in Braille, you have to precede them with a number sign so that it’s clear that these are numbers and not letters, and then numbers from 1 to 9 are letters from A to I, and 0 is J. So if I have to use a PIN code or something similar, I choose words from my various languages that can be written in Braille as digits, which makes them a lot easier to remember and type in. For example the Polish word babcia (granny) changes into 212391 if preceded by the number sign in Braille. This is helpful even if I don’t type in Braille but just any other keyboard or anything because I simply have to memorise the word and then it’s no problem to know what the numbers are. I also struggle with estimating numbers, like prices and stuff like that. One annoying problem that I also had with math at school was that I could do pretty well with it if I had someone sitting next to me and telling me what to do next and generally guiding me. I’d think for myself, but they’d just sort of help me figure out what to do next. And then I would often do everything really well and people would wonder what the problem really is with me and math when there’s no problem. But, as soon as the person would disappear, I’d have no clue what to do. It was super frustrating for me when I worked with my math tutor while at the mainstream high school, and she would often give me some homework to do. So in order to not forget how to do what we’d just been doing during our lesson, I’d sit down to my homework as soon as we were finished with the lesson, except my brain no longer knew how to do it. Perhaps if she’d given me the exact same math problem that we did during the lesson, maybe I’d be able to do it on my own, with the emphasis on maybe. 😀 So I’d be confused as to which operations to do when, and something would always go wrong. Especially if I ended up mixing up some numbers in the meantime as well, and as a result I could rarely get the right result. Interestingly enough, Sofi has exactly the same problem now, and for her it’s also similar to how it’s been for me inn that it’s gotten a lot worse around fourth grade. Sofi’s actually a preemie, and my aforementioned tutor also worked with her. She specialises in working with special needs students, especially blind and deaf but also more generally, and Sofi has no diagnosed special needs, but when my Mum asked her if she could help Sofi out she was willing to do it and taught both of us. So she spent like two hours with me (because I was preparing for finals at that time as well) and an hour with Sofi and we both marvelled at how she has so much patience and joked that this is why she gets ill so often, because she really got very ill with some sinus stuff or other such every few weeks. And quite soon after she started working with Sofi she said that it seems like Sofi might have some mild learning disability due to being born prematurely and suggested that she should be evaluated or something, but Mum didn’t go deeper into that as she didn’t think it could actually be practically helpful even if she was diagnoseable with something, because Sofi doesn’t have any academic ambitions really so she doesn’t even have to do the normal high school but can go to vocation school or something like that if she wants. Indeed, Sofi now says that she would like to be a plumber, or should I say a plumbress, lol, but still I think perhaps that would have been useful for her anyway. Now Sofi has a “mainstream” tutor and she – Sofi, not the tutor – tells me that she’s really struggling with her, because the tutor seems to think that Sofi’s just lazy or stupid or something, when actually she understands everything quite well during the lessons, it’s just when she has to do something completely on her own with no guiding that she has no clue how to actually apply what she knows in practice and just writes nonsense. 

   Other than math, Bibielz also can’t do a lot of seemingly simple manual things. Like how the flip do people even tie their shoe laces?! I’d been taught that in preschool, then at school, then my Dad tried his luck and I still don’t know how to do it. It’s kinda like with math, I know in theory what you have to do in order to do it, but I still don’t know how to do it in practice anyway. Not that I care, I can just wear shoes without laces, but yeah, that’s just another thing that Bibielz can’t do and that’s a mystery for me how other peoplez do it. And a lot of other things like that, like how do people do it that they can cut their food into even pieces, well generally cut either with a knife or with scissors properly? In my blind school, we had to eat with a knife and fork, one of the staff even said that we should eat vegetables that we would eat alongside sandwiches for breakfast with a knife and fork rather than just with our fingers as I guess most normal people do, though noone actually did it, and while I can eat with a knife and fork no problem, cutting food is another thing, so someone always either had to help me do it, or do it for me. We had such subject at school which I have no idea how to translate it to English, we learned how to do artsy things there (or as Sofi says “plast plast”) but also things like cooking or sewing or such. I had great luck that pretty much all the people who went to this particular class with me also struggled with it and most were intellectually disabled, and it was a pretty small group of just four people most of the time so our teacher was able to give everyone quite a lot of attention and make sure that no one would make too much of a mess during their crafty endeavours, wouldn’t ruin a Mother’s Day card or other clay figurine for their mummy so much that it would actually show that they did it totally independently, or chop their whole finger off and mix into the salad. 😀 I was also super lucky that this teacher actually really liked me despite  my shortcomings at her subject, and as soon as she discovered that I am decent at writing, we’d made an unspoken deal that I would make up lovely little poems for various cards that my classmates were making for various occasions, or for school events or stuff like that, while she would do most of the manual labour for me, which I was super grateful for. Or whenever she would learn about any art competitions for her students to take part in that also accepted literary forms, she would encourage me to take part in them and I would work at some short stories or stuff like that during our lessons. When I came back home from that school, I mean for good, I really wanted to learn at least some basic cooking or something like that, and wanted to help my Mum make dinner, so she told me to cut up vegetables. It went fairly decent for a while, even though my vegetable pieces were in all sorts of shapes, but then at some point I cut my finger pretty badly and there was so much blood that my poor Mum got really scared, and now she’s very reluctant to let me do anything more serious in the kitchen. 😀 

   Yeah, so these are a few example things that Bibielz can’t do. 🙂 

   Now your turn. 🙂 

Question of the day.

   How do you people deal with heat? 

   My answer: 

   Thankfully, I have my AC now so that helps a lot. I would really like to be able to control it more than I can, because unfortunately its app is pretty much unusable with VoiceOver and the only thing that I can use with it is its remote, so the only thing I can do knowing what I’m doing is to turn it on and off, and even then it often likes to act up and I have to turn it both on and off repeatedly for it to actually take effect, but it’s definitely better than none. This is why I am thinking about getting myself a smart AC controller, it’s called Sensibo Air and is very accessible, you plug it in the AC, configure it with an app on your phone and it basically works like a remote. Except I’m not entirely sure yet if it’s compatible with my AC, and my Mum hasn’t really been able to help determine that, so we asked a guy who was setting it up for me to come over and check it, but so far he hasn’t. Anyway, yeah, AC is very helpful during a heatwave, and I also sporadically use it in winter to heat the room. 

   My room generally heats up really fast, so I also have blinds here, and they help somewhat as well, but not extremely much. 

   Other than that, I try to drink a lot, especially iced drinks, be it orange juice, water or Pepsi, iced coffee too but it’s not hydrating really. I really really love ice, I don’t know what it is and if it’s something about ice or something weird going on with me but I’ve always really loved ice, be it feeling it, sucking on cubes of it, hearing it, icicles, or drinking iced drinks, where you can actually feel bits of ice. When I was a kid, and even now, actually, I wanted there to be ice that wouldn’t melt, or not so easily at least, so that I could have like a whole container of it and feel it as long and often as I’d like without it melting. I know that health-conscious people like my Mum say you should actually drink hot drinks when you’re hot so that your body will start cooling itself down or something, but that doesn’t make much sense to me, and I bet that few people actually do it unless it’s somehow part of their cultural customs to do that, not even my health-conscious Mum actually does it. I typically have tea with my breakfast though no matter the season, or sometimes cocoa or I used to have coffee a lot too, because having a cold beverage with breakfast feels kind of weird to me and I don’t like cold or even iced tea, and I haven’t noticed that it would make me particularly cooler when it’s hot. Very cold kefir will also do, but iced kefir would be kind of odd I guess. 

   We are also very privileged people here because we have a river on our backyard, so while you wouldn’t necessarily want to swim in it I suppose, you can still sit by the shore and put your feet in it or even sit in the water where it’s shallow. A cold/very lukewarm shower is also something I like to take especially if I was out in the heat riding in the car or something. 

   I only tend to wear stuff like airy, breathable dresses or skirts when it’s hot, with leggings underneath if I have to people ‘cause I don’t like to show my legs if I really don’t have to, or I just wear a long enough skirt. If I go to the beach or for a trip or even out on a terrace or to sit by our river or for a walk, sunscreen is a must in summer ‘cause it’s quite ridiculous how quickly I can get sunburn, I typically use grape seed oil for that. 

   Oh yeah, and I try to limit standing for long periods of time as much as possible. This is something that has always been a bit of a problem for me ever since I was a young child, that long periods of standing in one place would make me feel faint and like extremely tired and nauseated and my pulse would   get a lot faster, and just the whole thing is really weird and awful in general, and it’s regardless of the weather, but heat is one of the things that is a particular trigger for that. Sofi has the same thing which is even weirder because unlike me her blood pressure seems to usually be normal rather than usually low like mine, we both also had cardiological assessments because our Dad has hypertrophic cardiomyopathy but there was nothing wrong  with either of us. That’s why I always dreaded school trips, which typically took place at the end of school year when it was already pretty hot and would involve visiting stuff like museums or other such where you’d be standing for ages in front of every single exhibit and listen to a lecture about it. 😀 And I have to avoid Corpus Christi processions (Corpus Christi is a Catholic holiday) which are typically in May-June and it just absolutely always has to be hot when this day comes. Walking as such is okay with my system, but when it’s a procession, you first have to stand for quite a while before it starts so you’re already starting to feel a little weird before it starts properly, and then stop regularly and go from kneeling to standing to kneeling and so on, which doesn’t help, so that I usually am not able to make it through the whole thing before I get the ringing in the ears sensation and everything starts to feel oddly distant, so I would usually ruin it for my family because one of our parents would have to take me (and often Sofi as well) home and miss the rest of the procession as well. And I hate drama like that and ruining stuff for people, so while I don’t like having to avoid it,  I just go to the morning Mass with Mum and Sofi so that when Mum wants she can go to the procession later. Anyways, while I’ve never ever fainted, I don’t fancy experiencing it, so when it’s hot, like I said I prefer to avoid  standing  for too long if I can, but normal walking is fine. 

   What are your strategies? 🙂 

How do I feel about my age?

   Thought I’d do some journal prompt-based post again, ‘cause, well, why not? 😀 

   I chose a prompt from Hannah Braime’s book The Year of You, which is the following: 

   How do you feel about your age? 

   Well, I think I’ve written on here before about how I feel there’s a kind of dissonance or something between my emotional vs intellectual maturity. There are people who get such an impression of me that I’m an old soul, and it makes sense in a way because ever since I was a child I always tended to prefer to hang out with people at least slightly older than me, I always found that a lot more interesting. Actually, as a very young child, I very much preferred hanging out with adults than other children, and especially being in adults’ centre of attention, like show off my singing abilities and stuff. 😀 I didn’t really do how to relate to other children back then, I guess. There are people, including, as I often share on here, my own Mother, who come for advice or opinions to me and seem to treat what I say very seriously, which in a way is cool because at least I guess I can be helpful for people, and it’s quite an honour, but also kind of fun and weird because, well, I have very little actual life experience, if not for any other reason then at least because I’m just 25, and sometimes it feels like a lot of responsibility to try to help people with their life experiences when they are not something that I have ever experienced. I guess part of why people see me the way they do is that I have a keen interest in analysing the characters and behaviours of my fellow humans and seem to have a very useful ability to often draw fairly accurate conclusions, and it gives others the idea that if you can judge someone’s character more or less accurately, you must be a very wise person as a whole. I am also considered intelligent by those who know me well like my immediate family, and I guess a lot of people see (verbal) intelligence as synonymous with wisdom. 

   But while I may well be a good judge of character and like to have deep or intellectual convos with people, I don’t actually consider myself very emotionally mature. Most of the time I feel very childish and clueless about life and most things really, apart from all the niche stuff that I’m into, to the point that it actually often feels pretty ridiculous. And most people, even those who simultaneously think of me as an old soul, especially those who actually know me in person, also see me as very child-like, if not infantile at times, in a lot of ways. I look pretty child-like and often react to things in child-like ways or have a lot of child-like behaviours in general. All my regular readers know that I like, especially in Polish, to talk about myself as Bibiel, as in “Bibiel likes this” or “Bibiel did that”. I used to do that all the time as a kid and teen, I wrote on one of my blogs like that all the time, now I usually do it when I’m really excited about something or stuff like that, but also when it simply kind of feels more adequate than just say I or me. Sometimes Bibiel feels just the only right thing to say. As I’ve written before, people have had all sorts of reactions to that – some think it’s cute, others think it’s eccentric and creative, others yet think it’s annoying or just plain childish or kind of sick. – And some like my Dad actually call me Bibiel pretty much all the time and think it’s kind of funny and really weird at the same time (btw just when I’ve been writing this post he yelled Bibiel outside my window so loud  that I almost shitted myself, not to mention Misha 😀 😀 😀 at least I know from whom I inherited my immaturity). In English I generally say Bibiel less, I’m kind of worried that since I’m not a native people might sometimes have a problem understanding me even without my throwing neologisms and weird constructions in, but recently I’ve been saying Bibiel more especially on here ‘cause it feels more genuine to just say “I” all the time, especially that it’s used so much more in English than it’s Polish equivalent, ‘cause in Polish everyone knows that you’re talking about yourself from the verb form. And unlike in Polish, I’ve also started to say Bibiels or Bibielz in English, even though there’s obviously only one Bibiel – well okay there are apparently some people in Brazil called Bibiel because years after we made up this word with Sofi I learned that it’s a (masculine) name in Brazil though it’s pronounced differently, but Bibielz in this sense as me, there aren’t any more  Bibielz in this sense I suppose so that’s just why it’s so funny to say Bibielz and make it seem like the whole universe must be bursting with Bibielz and literally creaking and cracking and moaning under the weight of all the billions of Bibielz and then some more and then their offspring, even though it’s not. 🙃 Does that even make sense what I’m saying to non-Bibielz? 😀 Aside from just calling myself Bibiel simply because I like that, I imagine Bibiel to be like the more child-like, spontaneous and carefree and crazy, but at the same time more mentally healthy, part of me. One who has a horribly childish sense of humour and likes to laugh a lot and is almost constantly either excited or obsessed in a positive way with one thing or another and can’t stop talking when she gets a chance to start. And while being kind of older and kind of younger than you actually are at the same time  can be tricky, I would never like to get rid of Bibiel, because also at the same time Bibiel makes everything easier. 

   I guess while in a way so far I’ve never grown up properly, in another way, I sort of had to grow up faster than most kids my age when I went to boarding school when I was five. And my little theory is that part of why I’m still so childish now is because Bibiel wants to make up for all that time. And there’s Sofi around, oh yeah, and Misha, and Jocky (and then my Dad, if all else fails) so there’s always someone to play, laugh and goof around with. Thankfully, even now that Sofi is 15, she’s also still pretty child-like herself, although sometimes I already start to feel that she’s becoming more mature than myself. 😀 Am I concerned? A part of me thinks that I probably should be, but mostly I’m not really. Sometimes I wonder whether some part of why I feel a lot younger than I am most of the time could be due to AVPD, because it seems to be a common experience of people with this disorder, so I’m curious if there’s really some link and how it works. 

   When Misha joined our family, Sofi and me felt it was such a pity that he can’t actually talk and tell us what he thinks and just chat with us. I still think it’s a pity, but one day I came up with an idea that we could play that Misha can have a connection with either of us, a brain connection, something kind of like Bluetooth or Internet or phone connection or stuff like that. He can connect to either of us, whoever is willing, and use this person to communicate through them. So we started playing like that and Misha would connect either to me or to Sofi and we could talk with him like that and incorporate him in our plays even more. But Sofi, while she liked the idea, felt awkward when lending her brain to Misha, because when she talked to Misha it could sound to an outsider like she was having a dialogue with herself and part of it in a child-like voice ‘cause of course we imagine that Misha would be rather child-like if he could talk, he might be middle-aged by cat standards but he’s so small and has only lived for six years, after all. I had no such inhibitions since I talk to myself anyway, so since then Misha talks mostly via me. It’s a very useful psychological tool, because even now when Sofi’s fair bit older than when we started doing this, she’s still more willing to share some of her more personal or deeper thoughts or problems with Misha than with Mum or just me, and it’s kind of easier and more fun for both of us, when she hears something from Misha who often points things out to her indirectly or asks her funny questions to make her think herself, rather than Mum or me directly lecturing her. I often come to Sofi with Misha when she’s in bed so that she can have a chat with him or we three can play together. Sometimes we even have distance chats, that is when Misha isn’t physically present in the same room as we are, but that doesn’t usually feel quite as genuine. Now the only thing we need is for someone to find a way to phone pets whenever  humans are away from home so that we could check on them. Over time, Sofi herself came up with an idea that it would also be cool if Misha could do other things through us, and for that he sometimes connects to me, and sometimes to Sofi, so like he can try peep food through us, do crafty stuff (or plast plast, as we call it) through Sofi, and write emails to Sofi through me. I wonder how many people my age or older do stuff like that. 😀 

   When I was a child, I never actually even wanted to be an adult, it always seemed insanely scary to me and I didn’t like how lots of kids seemed to look forward to it ‘cause I totally didn’t share the enthusiasm. I think I’ve shared with you how once when I was in nursery/preschool and laying in bed, I had that weird dream or other sort of vision or whatever (because I didn’t feel like I was really sleeping when it happened so I’m not sure how to call it) of myself as an adult, it was absolutely ridiculous and back then a bit scary for me because it felt so realistic. I saw myself standing in the middle of a huge but very crammed, messy kitchen, something was frying and it seemed like I was in the midst of or about to prepare a meal or something like that, the whole place was super hot, and I was wearing some sort of huge, wide apron which made me feel like an old lady, and I was apparently an adult, though I totally didn’t feel like I was. The worst thing was that there were small children literally all around, clinging to me and wanting something from me, and I felt utterly confused and didn’t know what to do with all that. I suppose my idea of adulthood then – so as a 5-year-old – must have been based on my Mum – that you have a family and kids and make them meals and you have to have everything together even if you don’t (although my Mum actually does, and she doesn’t have a messy kitchen, nor does she wear aprons usually 😀 ) and I didn’t think like I could ever be able to do that. After that dream thing, whenever someone would ask me what I wanted to do when I grow up, for a long time I responded that I wouldn’t have a baby, because if women want to, they can have a baby, but if they don’t, they don’t have to. 😀 Adulting is still something that I find scary, so while I indeed don’t have children and don’t even make my own food beyond the most basic like sandwiches or cereal, my premonition was kind of correct. 

   Im very much a daydreamer and a bit of an escapist, and generally the idea of some major responsibility freaks me out. I’m terrible with stuff like money, for example, it feels very confusing and kind of abstractive to me. I generally don’t have a problem with abstract thinking, but thinking about stuff that has to do with counting, amounts of things etc. Takes a lot of brain CPU for me and I feel much better having someone assist me in making major purchase decisions, not because I cannot make my own decisions but to kind of make sense of things. Not to mention that I don’t do socialising. Socialising in general is pretty stressful for me as y’all probably know but sometimes an equally difficult thing is that I cannot make sense of social stuff, like when to do what, and need to ask my Mum for advice whether doing/saying, or not doing/saying something is appropriate, or what people usually do in such and such situation. I usually learn such things from books, stuff like body language for example, but I still don’t know loads of things. 

   I usually don’t think much about people’s ages unless it’s relevant for some reason, and so I normally don’t think a whole lot about mine either, but I usually totally donn’t feel my age. Usually I  feel a lot younger, especially when it’s my birthday I’m internally always like: “Really?! Am I this old already?! No way!” 😀 Or other times I feel like a total granny – cynical, weary of life, lacking brainergy after a migraine,   shaking my head at what kids do these days and what awful slang they use and what crap music they listen to and how people no longer do emails and can’t write properly but beatbox instead. 😀 Like, I remember once being part of a Polish forum for introverts, and they had a whole section with stuff like personality tests and such, including some sort of mental age test, and when I did that test (I must have been around 17 then) it said my mental age was 40. I wasn’t sure whether it was saying something more along the lines of: “Awww Bibiel, you’re so mature beyond your years, that’s amazing!” Or more like: “Your brain is rotting prematurely, do something!” 😀 

   But now that I’m 25, I do care a bit more about being this particular age, though for a very silly reason. 

   When I was in primary, I made up a really weird game together with one of my groupmates at  boarding school, that was supposed to predict your more or less distant future, or give you insight in whatever you wanted to know. When it was very quiet, so especially at night before falling asleep, you had to really focus and listen to your mind, until some random words, preferably a more or less coherent sentence, would pop into your mind, and that would be your prediction. Sometimes these ended up, at least for me, not to be sentences, but more complex imaginings, you know what sort of things can pop into your mind when you’re about to fall asleep, and I guess it’s all the stronger when you’re blind because when it’s quiet and your brain doesn’t get even auditory input, it likes to make things up. At least I am very prone to this. Sometimes the results we got from that were really hilarious, like my friend hear something like: “You’ll be bouncing on the waves of dynamite” and we were wondering whatever that might mean, or I once heard that I will be queen of Egypt, and then another time that my Dad will die by stoning in Sweden. It was all for fun and very hilarious. But one night, as I was falling asleep and trying to “predict” something, I ended up having an absolutely eerie half-dream or whatever it was. Inn it, I was aware that I was a lot older than I was at the time, I was climbing up the stairs of the old building of our boarding school (the building itself is pretty creepy for many newbies who come there, it’s pre-WWI, with a lot of corridors that go on and on, rooms within rooms that you can quite easily get lost in, and even some bathtubs with taps with black water running from them when you try to use them, and after all the groups were moved to the new building, that old building has become a lot quieter and one of its purposes was providing guest rooms for any family members staying for weekends, so for example my aunt whenever she visited me she was really creeped out by the place. For me it definitely wasn’t creepy because we were still living there when I had that dream so it was just normal and perhaps a bit atmospheric, but in this dream, it definitely added to the overall creepiness, and after having that dream I always got the creeps whenever walking those stairs. Then I opened what would normally be the door to our then-group, but as soon as I opened it, I heard an absolute cacophony of sounds, and the place I found myself in wasn’t anything like our group, it was like a small house within that huge building. That cacophony of sounds were all sorts of sounds that have given me sensory heebiejeebies in the past, and on top of them was certain evil British song with a Jamaican Patois chorus from 2005 which for some evil reason was topping the charts in Poland around that time and even still gives me the heebiejeebies whenever I hear it (probably because I never get to recover from it because Olek likes it and thinks it’s funny that I don’t and likes to tease me by playing it, at least I suppose in his mind it’s just supposed to be teasing, but the result is Bibiel z freezing 😀 ). It was my biggest sensory anxiety trigger at the time, so I got really scared. And as is often the case with my dreams, all these sensory anxiety triggers had like their personifications, and the one that personified that song came up to me and told me that they’ll be waiting for me here, and when I’ll be 25, I’ll die and I’ll come to them and we will spend the eternity together. Then it all disappeared, and that was the end of my playing the predictions game, because I was absolutely convinced that since I was expecting to have a prediction and ended up having this weird dream thing, then that was what I wanted – a prediction of what is going to happen to me. – Except that I would probably die some time before turning 25, of fear of what was going to happen to me. Over time, of course I started thinking that it must have been just a dream, things like that don’t come true, ‘cause how would it even be supposed to happen, is it like a form of hell or something? 😀 But still, for a long time I had that niggling feeling, what if, maybe it won’t happen exactly like in the dream, but what if something really creepy was to happen to me when I was 25? I’d never shared this with anyone, because for a long time it felt too scary and I couldn’t even articulate it I guess, and then it felt too silly. I only told my Mum about it shortly before my last birthday, when I was actually able to have more distance to it. And even though I no longer believe that this is what is going to happen to me and am able to laugh at this dream and that whole game thing, I guess the original impression was so strong that deep within my brain I still have a very small niggling feeling, what if something real creepy will happen to me soon? Other than that though, as I said, age is usually not a very important thing for me, whether it’s my age or someone else’s. 

   Now you tell me. How do you feel about your age? Do you care about such things? 🙂