How I think other people would describe me.

I thought I’d do some journaling prompt-based post, and I chose the following prompt from Hannah Braime’s The Year Of You:

How do you think other people would describe you if asked?

Before I get into the actual topic, I’d like to brag about the fact that last week I got my MacBook Air, and that’s what I’m writing to you from currently, and this is my first post from it. I wrote in one of the recent coffee shares that I’d been thinking about getting one, but planned it for some more or less distant future. Well, to keep it short, let’s just say that all sorts of different circumstances contributed to me making the purchase a lot earlier than I thought. Now, in the space of… wait a minute, how long have I had my iPhone for?… not even two years… so, in the space of less than two years I’ve acquired a total of THREE Apple products!… :O Me! πŸ˜€ Who would have thought… But, as you can surely imagine, I’m still learning and still mostly relying on my Windows computer. I’m not rushing with it really. A lot of things in the Mac world still feel super weird or totally mysterious to me. I don’t know what the end result will be and I also have to take into account the possibility that I end up not getting used to it quite as well as I hope I will and will not be able to rely on it as my primary computer, I know a handful of blind people for whom it hasn’t really worked out that well, and that was the main reason why I originally planned to wait with the purchase. But I’m going to give myself even as much as half a year to see how I get into it. I’ll let you know if I can finish this post successfully from here or if I’ll switch to Windows midway. Now, let’s get to the oh so self-centred topic of this post.

I wrote on the same prompt in my personal diary a couple months ago and said there that I think it’s quite interesting that it seems that various people would probably describe me in ways that would differ from each other quite a lot. I know (well, at least to some degree) what the reasons behind that are, but I can’t help wondering if part of it could perhaps be due to me being somehow two-faced or just not genuine at all. I think it’s really hard to say as there are many aspects involved in this. Before I thought about Β writing a post on this, I decided to actually talk to my Mum about it, mostly because, despite she is one of the people I’m closest with, if not *the* closest to me, I had trouble thinking of the things she could say to describe me, so I thought I’d simply ask her about it and, quite as I expected, received a full report in response that didn’t include only my Mum’s own view of me but also she mentioned that she thought I would probably get a different description of myself depending on whom I’d ask. πŸ˜€

Mostly though, I think someone who doesn’t know me very well would usually describe me as shy, quiet (I absolutely hate when someone calls me “quiet”, you should spend a freaking minute in my brain if you think I am πŸ˜€ ). Many of those people seem to think I’m not particularly smart and rather plain and uninteresting and don’t really have an idea about much of anything because I don’t have a lot to say, or that I’m very apathetic because I don’t seem to react to anything very much and don’t seem to have any deeper feelings. When I sometimes do spontaneously and usually more or less accidentally reveal something about myself to them that they don’t know, or if someone else does, they’re usually quite shocked.

Then there are also people who don’t know me well who think I am very outgoing, talkative, eloquent, smart and humourous, ‘Ive even heard Β stuff like charismatic. That’s usually when such an individual met me one-on-one which situation I often find easier to interact with people in, plus probably in a setting that I was comfortable with, like, dunno, talking about Misha, and when I’m generally doing quite well socially, which sometimes seems to be rather random I guess. We’ve had quite a handful of such situations where I’d talk with someone and then later they’d be raving about me to someone in my family how delightfully outgoing I am and my family would be like: “What?!” πŸ˜€ Or such person would then see me in a different situation, where there are perhaps more people or which is more challenging socially for me for some reason, and they’d see the version of me that I mentioned earlier, and they’d be like: “Ohhh, what’s wrong with Bibiel?” Unfortunately I can’t always control that. Like, as some of you might remember, I had an autism evaluation some three years ago. That was the second one I had in my life, because I had one earlier at school as a kid, but back then the circumstances were rather yucky, I wasn’t really informed about things properly and I really didn’t want having that diagnosis so I did all I could to avoid being classified as autistic, whereas that second time I was open to it being a possibility and thought that if it was indeed the case, having a diagnosis could help me a bit, if only with explaining some things to people, and my Mum was pretty much sure that I actually must be autistic. Except when I came to that evaluating place, my “delightfully outgoing” persona kicked in, despite I was actually feeling terribly anxious, and they decided that I am most definitely not autistic at all. πŸ˜€ While I decided to keep it that way, because I figured they’re the experts so they should know, after all, if I really had it, they should be able to tell it anyway I guess, and I wouldn’t want to go through yet another evaluation, we sometimes wonder if they’d say the same thing if they could see me in some real life situations.

Then there are peeps who simply think I am an icy, indifferent person, and I guess they tend to get the impression Β I’m very nerdy or something., or that’s what I’ve been told When I was a teen I’ve heard that some people are intimidated by my iciness/unfeeling-ness, which idea I actually liked, haha, though that totally wasn’t the reason why I acted this way. I now try to do that less, more for my own sake than other people’s, but around people I feel very insecure around it is really difficult not to, after getting my brain used to handling situations this way.

But let’s talk about people who actually know me somewhat more, that is my family.

My Dad, I’m actually very curious how he would describe me if someone asked him, but I wouldn’t ask him that myself as he’s not the type of person my Mum is and would surely find something like this difficult and pressuring rather than fun. But I think he would say something like that I’m funny, know a lot of weird things, like where random people’s surnames might come from (for some reason he often asks me that sort of thing like when he hears some weird surname on the TV he’ll ask me where it comes from, and I will often not know because I feel a lot more competent when it comes to given names’ etymology rather than surnames, Β but sometimes I do know or can at least try to guess something and he finds that interesting and always wants to know how I know that sort of thing). He’d probably also say that I’m weird, but not because I am actually weird, rather because there’s a lot of things that my Dad considers weird or downright crazy. For example, extensive use of one’s imagination without an actual need for it like creating something practically useful, or talking to yourself (that’s mental, after all), or talking to a cat as if he were a human, or saying that you’re “reading” a book, even though you’re listening to it. Actually, his phrase for this kind of weirdness is that someone “has films”, which is odd, because in real Polish language “to have films” means to have hallucinations, after drugs usually, but for my Dad it means to have weird, unreasonable behaviours. My Mum constantly “has films” too. Because my Dad is the kind of person for whom something is usually only real when it’s visible, he would also probably say something like that I lead a VERY BORING life, because I have no real, important job, and the one that I do have is only because he graciously agreed to provide it for me despite it wasn’t necessary for him. Furthermore, I never go out, except in absolutely essential situations, I have no real life friends and spend most of my time doing things that he considers meaningless and mundane, like writing some freaking blog posts, when he doesn’t even know wth exactly a blog post is, and I’m not even making any money on it like all them influencers that Sofi follows do online. He thinks the same about my Mum’s life, though of course for different reasons, but he fails to recognise that what makes our lives truly fascinating for ourselves is our inner lives. He’d likely also say that I’m a good listener, because I try to be that for him, even though he’s one of the more difficult people to listen to for longer periods of time, because he finds it hard to put his thoughts into words. But I’ve always got a feeling that there are a lot of things that he’d like to talk about to someone, particularly about his past, to share his memories and stuff like that, but in our family no one seems very interested in that. Neither do I find it extremely interesting, but I believe everyone should have an opportunity to share such things if they feel such a need, so I do try to show a genuine interest in what he has to say, most of the time anyway, and I’ve spent countless hours listening to the stories of his rather colourless, childhood and teenage years, his time in the army (which I actually think must have been rather traumatising for him) and the times when he worked at waterworks (or at least I hope that’s the English word, I don’t have a handy translator app on here yet as I do on the PC), which he now looks back at very fondly and probably idealises that time a whole lot simply because it happened when he was young, and he now has a much better life situation, at least from an outsider perspective.

Like I said, I had a problem coming up what my Mum would say, so I asked her, and she said that I am “of above average intelligence”, which I could actually have predicted because that’s what she always says, even though I’ve never had any kind of IQ test done (it seems to be quite tricky with blind people). She said that it’s very interesting to talk to me because I seem to know something about almost everything and have a lot of interesting ideas. We both do, actually. We could start a business selling our ideas to people, lol. She thinks I have a very extensive vocabulary and am a good storyteller, which actually surprised me because while I certainly do have a large vocabulary and can go on and on and on about things I really love,I Β never thought I was actually a good storyteller when speaking. She also said that I am a good listener and have a good sense of humor and that she doesn’t understand why I don’t reveal these qualities of mine to people more and wondered if it is because I feel superior towards people. I really don’t understand it when people interpret things this way, when someone is introverted/shy/socially phobic/whatever else similar people will instantly assume that you must consider yourself superior. It used to really distress me because it just couldn’t be further from the truth. She thinks I could achieve a lot in life, but to do that I’d have to do people, and I can’t do people so my chances are greatly diminished. I Donn’t really know if that’s true, that I could achieve something big sometimes I think so too, other times absolutely not, but regardless, I think it’s the case with a lot of people who could otherwise achieve a lot of great things in their lives if not something that is getting in the way because the world doesn’t work like they do. As for myself, I don’t even know what so great that could be that I could achieve, people or no people, which probably complicates things even more. And let’s not forget that I also cannot do math. πŸ˜€ She also thinks that I’m difficult to get along with, which is absolutely true, and that I am a hopeless case of a pessimist, which, imho, is not. I certainly am a pessimist and one who is very proud of it because positivity is awfully overrated, but my pessimism is not hopeless, it’s just defensive. I don’t like the kind of pessimism that makes people grumpy and always discontented with everything. I do my best to enjoy life and all that it gives me, while being a pessimist at the same time. It’s like, optimists see the glass half full, pessimists see it half empty, and Bibiels expect to be dealt an empty glass, and then when they get half a glass, Bibiels go “Yayyyy! There’s actually water in it!” πŸ˜€

I don’t really know what Olek would say about me because as it is, we hardly talk. Sometimes though, when we’re the only people who happen to eat dinner at the same time or something like that, he’ll talk to me about stuff that’s going on for him and, unlike with my Dad, I am genuinely interested and don’t have to make it seem so, so I do hope he considers me a good listener. I often think that he must think I’m extremely weird and that he generally doesn’t really like me but I have no actual evidence for that. He seems to think that I’m something like a grammar guru because he often asks me if something’s grammatically correct or something like that. And I’m pretty sure he also likes my sense of humour.

Sofi thinks I’m different than most of my peers, that I’m crazy, in a positive way, because we do a lot of crazy stuff together, that I often make her laugh, that I’m kind of childish, that I’m medieval because I’d rather people send me things via email than Snapchat (I don’t even have such a thing as Snapchat in case you’re wondering), and because I listen to “ancient” music and don’t know what her slangy words mean unless they’re from English, but even then I sometimes don’t because kids here sometimes use English words differently than what they actually mean in English. She also thinks that I should get some treatment because of the amount of languages I want to learn, but I’m not sure if she’d mention that if she had to describe me.

My poor, Fillyjonk grandma would probably say that I’m a poor, blind girl… and I’m not really sure what else she’d say, and if she would be able to specify why exactly I am poor, but that’s the adjective she often uses in reference to me. Perhaps she’d also say that I used to sing as a little child, but now I no longer do at all, because that’s where she seems to be stuck at a lot of the time. My grandma is a perfectly clear-minded, educated woman, but she just can’t seems to get past some ideas she has about me and I find any communication with her extremely difficult for that reason so I can’t even challenge that somehow. My Mum tried too, because for her it’s more of a problem than for me. Then again, I myself am not hugely motivated to change her view, it’s not like I live with her and like what she thinks matters hugely.

My grandad would probably say that, well, I’m an X-ray, that’s how he often jokingly calls me because he thinks I have a good people instinct. He often says that I am “like him” so he’d probably say that too. He’d more than likely say that I am smart, because this is something he values in people. He wouldn’t say one even slightly negative thing about me because he never does, I don’t think he’d say anything critical to me or about me even if I decided I want to kill someone, so it’s great that he’s my grandad, rather than my father and that it wasn’t him who brought me up. Other than that, I don’t really know. I have a really strong bond with him and he has always stood by me even when no one else has, and we understand each other really well, but actually a lot of time we’ve spent together has been mostly in silence, because we seem to get along best this way, so I don’t really know what he’d say.

And my gran would probably say something like that I am not like all the other blind people she’s heard of because I don’t travel by bus on my own and don’t do music.

So yeah, I think that’s it. In case you’re curious, yes I’m still on the Mac, yay for me! That’s the power of defensive pessimism for you: I thought I’d maybe do two paragraphs and then get frustrated and won’t know how to do something and switch to the PC, that it’ll be good if I’ll even manage to find my way on the rather chaotic WordPress website with the weird VoiceOver navigation so that I can at least Β start writing, but I’ve made it with barely any problems at all.

Okay, now over to you: how do you think people would describe you?? Be it people from your family or any other people? Is it consistent with how you see yourself? πŸ™‚

Question of the day (6th December).

If you had to choose another period from world history to live in, what would it be and why? Do you think you could survive in that time?

My answer:

We had a very similar question over a half year ago, so you can read

my answer here.

That earlier question didn’t include the bit about surviving, but I think I covered it in my answer quite extensively. It would certainly be super tricky to adapt, I seriously can’t imagine living without electricity and Internet, but I guess I’d get used to it over time and maybe would find good enough ways to compensate for that.

How about you? πŸ™‚

Question of the day.

What is your least favourite board game?

My answer:

I don’t think I have one, because I dislike most board games equally much. In our family there are people who either really like playing board games, or find it extremely boring. Both my siblings love board games, my Dad also enjoys playing them sometimes like on holidays when we’re spending time together or something. My Mum really doesn’t like it and says board games make her want to sleep, and it’s very similar with me. It’s just not particularly exciting really. My extended family also seems to be divided into these two camps. My Mum knows how much Sofi enjoys board games though, and she likes it far more when Sofi plays them rather than sits on her phone, so she’ll often play them anyway just to occupy Sofi and make her happy. I used to play along with my family as a young child but now it’s been ages since I last played a board game. The only board game that I’ve played quite a lot and actually really like is Scrabble, since it’s a word game. I got Scrabble adapted for the blind from a friend, which sighted people can also play just like normal, and she also taught me how to play it and we’d play it a lot when she visited me at the boarding school and I like that. Then I took it home with me and played it a lot particularly with my grandad and Olek, but ever since we’ve moved houses it must have got lost somewhere because I haven’t been able to find it which is a real pity.

How about you? πŸ™‚

Delyth Evans – “Gymnopedie III”.

Hey people! πŸ™‚

Recently I shared with you one of the Gnossiennes composed by Eric Satie and played on the harp by Floraleda Sacchi, and today I’d like to share another, and I guess more commonly known, composition by Eric Satie – the last of his Gymnopedies. – Gymnopedies are three pieces of music that Satie composed for piano, all very melancholic pieces (the first is meant to be played painfully, the second sadly, and the third – the one we’ll listen to today – gravely) and I’ve heard quite a few different harp performances of them and I really like how they sound played on the harp. The name of these pieces comes from some ancient Greek festivity called gymnopaedia, during which young men were dancing naked/unarmed. I have a little bit of a personal connection with Gymnopedies because when I was in nursery, there was a documentary that was being filmed about our nursery (for the blind) and how we lived in there. Then all of our parents got a copy of this film. I now know that my Mum hated that film, but she watched it a lot anyways especially when I was away at school and then she always ended up crying. Once I grew up a bit I never liked watching it either or people mentioning it, something about it is very depressing to me though I’m pretty sure it’s just in my brain and all sorts of memories coming up rather than the documentary itself being objectively depressing. Anyways, gymnopedies were in the soundtrack of this film. I actually don’t remember now if it was all of the Gymnopedies or just one, and if one then which one, because I haven’t watched that in ages nor has my Mum, but I am sure that there was at least one Gymnopedie. I guess Gymnopedies are a sort of go-to soundtrack for all things that are meant to be tear-jerking because I’ve heard them used a lot in this way. This is actually a bit of a pity, because they’re great pieces of music, and while they’re melancholic, it’s not in a tear-jerking, maudlin way. But despite my Mum hated that film, she really liked this music and wanted to know what it is, and finally when she found out she bought some music album where Gymnopedies were included, I don’t know who played them. And she still really likes them despite they sometimes make her think about the times when I was at school and how it made her sad that I couldn’t be at home with my family. And that’s why, when it comes to me, what I primarily associate Gymnopedies and what they make me think of when I hear them is my Mum, rather than the time when I was in nursery, which I’m so glad about, because otherwise they’d probably be totally spoilt for me, and as it is, I really love them. Especially, like I said, played on harp. This third, grave Gymnopedie in A minor is played by the already well-known harpist on this blog, Delyth Evans (currently Jenkins) from Wales.

Question of the day (30th November).

I am learning…

My answer:

…these days, I’m learning a lot about what is currently generally known as traditionalist Catholicism, that is basically Catholicism pre Vatican Council II and Holy Mass before that Council, which is also known as Tridentine Mass or traditional Mass and I guess a couple other terms exist in English but I don’t remember that now. As you might or might not recall, my Mum and I used to attend the Tridentine Mass for quite some time, I’m not sure when it all started, maybe a year or two ago…? We loved it and I think we always had some kind of subconscious desire or need or I’m not sure how to call it, to go back to the tradition, to what’s actually true. But in the beginning our main motivation to go to the Tridentine Mass was just emotional – that it was so much deeper, more beautiful, very moving for my Mum, so atmospheric, and for me it was interesting that it was in Latin. – I recently thought that back then I didn’t even have much of an idea as for why exactly this Mass is still celebrated, I thought it was mostly the sentimental value, that people just like it more for this depth it has, that it’s just the matter of liking it more or something. I heard about people who put so much effort into it that they go exclusively to traditional Mass and reject most things post Vatican II, and while I admired that in a way, I thought it was kind of unnecessarily hardcore. My Mum had a traditional missal or whatever it’s called in English, which she always took with her to that Mass, and some other traditionalist books from a Polish publishing house that publishes only this type of content. She sometimes read them to me and Sofi but generally, good Catholic ebooks (at least in Polish, and I much prefer consuming Catholic content in Polish rather than English) are not very widely available, and even if I had some books it wouldn’t be quite doable for me to use my Braille-Sense in church comfortably, and printing that in Braille would be really expensive, so I had nothing, which didn’t help my understanding of this Mass. My Mum was confused by a lot of things, and I was twice as much. I did understand more of Latin than my Mum did, though, and it was slightly less challenging for me, because I know a few more IndoEuropean languages, and particularly English which of course shares a ton of vocabulary with Latin. Also my grandad knows a lot of Latin and taught me a lot of words as a kid, which I always liked and absorbed willingly, and I have an interest in names, and a lot of names with European origins (about which I know more than about names from other cultures) come from Latin words. I also read the entire Dictionary of the Foreign Words and Phrases when I was ten after my Achilles tendon surgery when I was in casts for six weeks and had not much to do. All that helps me to understand a lot of single words, or at least suspect more or less what they might mean, so I can sometimes figure out more or less the overall meaning of what is said. Also I learned some basic prayers by heart quite quickly. Then as time went by we went to Tridentine Mass less and less, because it was difficult logistically, it was only in one church that we knew of in our area, only once on Sunday and once on a week day, and in the afternoon which we weren’t used to as we usually went to Mass early in the morning and it felt kind of “lousy” waiting with it until the afternoon and planning everything else major for the day was difficult. Besides, Dad and Sofi still went to the “normal” Mass, and so did Olek except he never went with us so we didn’t have to adjust to him or anything. And my Mum felt it was kind of odd that we didn’t go to the church together, and Dad always wants to do everything together with Mum so he was sulking every time we went to the Tridentine Mass, but he never wanted to go with us. Sofi went once but, being younger and less aware of things than she is now, she was extremely bored and frustrated, not understanding a word from it aside from the reading, Gospel and homily, not knowing what was going on, when to do what etc. and it was really long for her. So eventually, we stopped going altogether, despite still having, or feeling like we had, a strong affinity with the traditionalist movement and my Mum really longed for the Tridentine Mass and felt that the new Mass was lacking in reverence for God compared with the traditional Mass and it pained her, and reverent is something that a Mass should definitely be. I felt it too, but I didn’t actually see things that happen at either Mass, being blind, so it wasn’t quite the same as for her, even though I saw that lack of reverence and focusing primarily on humans rather than God in other aspects and things. Then, I think it was October, my Mum started to dig deeper in all things traditionalist, reading, listening to and watching traditionalist Catholic resources, and sharing a lot of that knowledge with us all. I found that very fascinating, for lack of a more fitting word, so I listened eagerly and then followed down that rabbit hole myself. It all felt like a very slow, gradual process, but now when I think back to those first weeks of this it seems like a lot happened so suddenly. Then after some time Sofi followed too. She has a very keen interest in all this and asks a lot of questions but has a hard time finding information for herself, even when we provide her with resources, because she isn’t the most patient and struggles with lengthy reading or listening to someone talking for ages because there are no images that you could just look at and learn the gist of it in five minutes, so it’s a frustrating process for her, but she is also learning a lot. We are not only learning about the Mass, all the differences between it and the new Mass, but also other aspects of traditionalist Catholicism. I am just writing about it in short because it’s very complex and kind of tricky to write about and if I wanted to do it in detail I’d have to write a whole essay, and also because most of my active readers are not Catholic as far as I know, but there has been so much going on for us in this area lately. Now, ever since like the end of October-beginning of November, Mum, Sofi and myself attend only the Latin Mass, and if for some reason we are unable to do so when it’s a holiday, we attend it in spirit, and to help us with that we listen to a traditional Mass online, rather than go to the new mass. That may seem very weird or hardcore to Catholics who go to the new Mass, as it once seemed to me, and we had a lot of doubts initially, but that’s what we think is the best thing to do. Although despite our previous logistical difficulties with attending traditional Mass, currently, it’s not so much a problem. We actually consider ourselves super lucky because we’ve found out that, in addition to the church where we used to go for this Mass, there are also two chapels in our area which celebrate it regularly, and a few other churches which do it on a less regular basis or which are a bit further away but still close enough that we can go there if need be. That’s a luxury compared with some other regions and I’m so happy about that. Like, one time we went to the chapel, there were people from a town that is some two and a half hour’s drive away! :O As for books, yes, I still often feel totally clueless when I go to Mass, because like I said it’s not very doable for me to have a book to refer to during the service, but I am learning that, unlike it works with the new Mass, it’s not my role to understand everything, say all those Latin prayers and know what’s going on. That’s the priest’s role, and even he cannot understand everything, and that’s what we have faith for. Who, after all, even in their mother tongue, understands things like, for example, what Holy Trinity means? My role is to pray as ardently as I can, offer up everything I have, and praise God. Sure it’s our duty to deepen our faith by learning and trying to understand, but it’s okay not to understand everything and also I’m sure that over time I’ll become less clueless, I am already becoming less and less clueless, or so it seems to my little Bibiel brains and so I’m hoping. However, the situation in the book department is still much better than what I expected it to be based on my previous experiences. My Mum has been drilling the holes in the brains of people from that traditionalist Catholic publishing house that they should make ebooks, even that they should audiodescribe the traditional Latin Mass for the blind (yeah, my Mum always dreams big) but so far there are no ebooks that they offer. Yet, I’ve managed to find a deliciously old (19th century) Polish book that my Mum also has from somewhere, a book about Mass, all its part, what everything means, how to listen to it/take part in it, all the rituals and what they look like etc. etc. etc. It’s a small book and it’s not a missal or anything like that, it’s just the very basics and clearly written for simple people in a simple language, but I’ve found it very helpful to read before Mass at home. It made me think of one thing (well, it made me think of lots of things lol but one specific that I want to mention), because a few times it mentioned people who were illiterate and only then I fully realised that, after all, years ago, a lot of people couldn’t read and were in a similar situation to me, and I wondered how they prayed during Mass. I asked around and did a bit of research and turns out a lot of people prayed rosary. That reminded me of an elderly lady I once came across in church at new Mass, she was sitting behind me and I could overhear that she was praying the rosary, whispering rather loudly. I found that weird, and thought it was quite ignorant to pray the rosary while attending a Mass. Now that’s what I often do myself and I think one fits with the other perfectly well. Or I try to meditate on Jesus’ crucifixion. Then I also found out that there is a website which has all sorts of articles on traditional Catholicism, but also you can download missal as an ebook from there. So now I have my own missal as well so I can read readings and Gospel and everything before each Mass. Unfortunately, my Dad only went with Mum and Sofi once, when I was sick recently and couldn’t go with them. Afterwards, when Mum asked him about his impressions, he said he felt as if he was at a Mass in a completely different country and didn’t seem to like that feeling. He no longer expresses that he’d like to go with us and says things like “your church” so he clearly doesn’t feel a part of it. I guess it’s that little bit too far out of his comfort zone but maybe as time passes it will become easier for him. But we don’t press him, as that’s not likely to help. Olek is very interested when Mum talks to him about it but so far hasn’t been on a traditional Mass.

So yeah, that’s something that I’ve been learning a lot about lately. We laugh with Mum that it feels a bit as if we were newly converted or something. πŸ˜€ We also still feel a strong connection with this rite emotionally, I think it sort of resonates with our personalities much more than all the new stuff and I could list so many reasons. One recent example could be that we were once talking about how cool it is that it’s a sort of default thing for women to wear a head scarf or something similar at a traditional Mass. I initially thought it was a little odd that it’s almost like a requirement and couldn’t understand why such a thing would be so important, but now I really like it and so does Mum. You’re kind of veiled from people and you’re more anonymous, people don’t stare at you, and as my Mum says, you can cry if you want and no one will even notice, and my Mum cries a lot in church because she’s sensitive like that and easily moved. I often make weird facial expressions and not always know about it, or I do even when I know, so I like that for this reason too. And it’s generally just cool, though Sofi still says she feels like a Russian granny when she has to cover her head in church. πŸ˜€ Basically what I want to say I guess is that it’s more introvert-friendly in a way than things like charismatic movements and the like that have developed after Vatican II. I remember back when I was at the boarding school, there was a time when our boarding school group staff would often invite people from different religious groups/communities/movements within the Church that existed and they would tell us about those communities and encouraged us to join in and I’d frequently hear that it’s so good to belong to some group like that because then you are a member of the Church more fully or something along those lines. None of those communities resonated with me, they all felt like there’s so much socialising above all else and totally not my thing, so I sometimes wondered whether that makes me a bad Christian. I am happy that it doesn’t really work like I’d been told.

What is it that you are learning? πŸ™‚

Question of the day.

What is something that you refuse to spend money on?

My answer:

There are probably tons of things that I either consciously refuse, or just for whatever other reason don’t spend my money on that a lot of/most people do, but it feels so natural that I can’t even think of many such things at the moment. πŸ˜€

One such thing that does come to my mind though is films streaming services like Netflix or whatever else is out there. There are several reasons for that, but the major one is simply that I’m not all that much into movies. Or even regular, traditional TV, for that matter. Something has to really, really, really interest me for me to want to watch it and for my interest to keep going. Most people assume that this is normal, because duh, I’m blind. While I don’t care about how normal it is, it’s probably not the entire reason, because there’s quite a lot of content with audiodescription now on such streaming services and it’s growing. Plus, even without that, I know quite a bunch of blind people who enjoy watching TV or movies regardless, with someone being their personal audiodescriber or just things that are possible to follow more or less without audiodescription. Moreover, I’ve even came across a blind movie critic from Sweden. I guess I have something weird going on because, whether it’s with audiodescription or not, I find it quite difficult to follow movies, I get distracted or plain bored very easily. And this is very selective because I don’t have this problem with anything else really. Perhaps in some part it’s because when I was a small kid, Olek and me watched a fair bit of children’s television or cartoons, but no one really described everything for me in a very detailed way as is apparently the case with a lot of other blind folks and their families. And I didn’t really mind that, I didn’t think much of it and I’m not perfectly sure if I even understood it totally that other people take something else in other than the audio bit. πŸ˜€ And I think it just might not have crossed my parents’ minds that a blind child might need that. I usually don’t mind it these days either if someone isn’t up to describing, unless I’m really really really interested in something and totally can’t make sense of some scenes or a movie as a whole, then it absolutely can be frustrating. I suppose it’s difficult to do audiodescription while watching the movie yourself, especially for the first time, and describe things in a way that makes sense, and especially when a movie is fast-paced. In our family only Sofi can do this reasonably well, but will often get so engrossed in watching that she’ll forget to describe things when the plot gets more dense and it tends to be rather inconsistent. My Dad tries his best, but has no knack for describing, plus the same problem as with Sofi, and my Mum doesn’t do it nearly at all unless I explicitly ask her to. But like I said it’s not a big deal usually, it only helps me grow my deductive and analytical skills if I am interested in a movie, or if I’m not so much, then I don’t really care, I just zone out to my Brainworld which is always interesting, until Sofi’s back in multitasking mode. πŸ˜€

If I do watch things for some reason, it really has to engross me, or I watch for social reasons, that is as a way of spending time with my family, or for linguistic reasons, as a way to expose myself to a language or a particular accent in a language, which happens rarely these days because I can think of tons of more interesting ways of exposing myself usually but there was a time in my life where I’d be jumping out of my skin with euphoria at a possibility of watching a Swedish movie just to hear the language. πŸ˜€

So, as you can see, it’s not really worth it for me. Plus, Olek does have a subscription to Netflix, which Sofi also uses when she’s allowed and my parents use occasionally, so if I want to watch something specifically from Netflix I can watch it with Sofi. We watched Anne with an E, for example, which Sofi loved, and I had super mixed feelings about but mostly didn’t like it because I never like how movies based on the books change, simplify and cut out SO much of the original book plot line. πŸ˜€ We also watched Wonder, based on the R.J. Palacios book, which was amazing for Sofi who didn’t read the book, and pretty cool for me who did read the book. But, while I was kind of interested in how much both movies would differ or not from their book counterparts, there was a lot more of Sofi’s initiative in it, haha.

My Mum also subscribes HBO and a couple other things that I can’t remember now and sometimes we watch stuff from there, usually documentaries that we both find more or less interesting. Or one time we watched a whole Czech thriller or crime series or whatever that would be classified as in one night, that I originally only watched because there was a girl called Misha in there and I had nothing more constructive to do at the time, but it ended up being fairly interesting overall, even though I’m generally not a huge thriller person.

What’s such a thing(s) for you? πŸ™‚

Synaesthetic Q&A.

I’ve recently been seeing a lot of synaesthete people in various places post asking people to give them some things like pieces of music, numbers, pictures, words, even names in name geeks communities, whatever their synaesthesia is about, and they’d tell them what are their synaesthetic associations with this thing. I myself have also had people ask me especially about their own names, what I associate them with, and some seemed quite flattered when I told them that they taste like something very yummy, as if it was something I actually had any control over and said it on purpose to give them a compliment. πŸ˜€ Good thing though that people don’t get offended when I tell them that I associate their name with something generally considered totally mundane and insignificant. So anyway, I thought perhaps I’d do it on here, for any of you that might be interested in this and how it works for me, of course I’m not going to be talking about other people’s synaesthesias because I’m not other people so I only know their experiences second-hand and feel competent to only talk about how it is for me. Everyone experiences it differently and has different associations with different stimuli. I have lexical-tactile (word-touch), lexical-gustatory (word-taste), and a bit less developed auditory-tactile (sound-touch) and auditory-gustatory (sound-taste) synaesthesia, but as you can see it mostly evolves around all things lexical, so if you’re curious what are my synaesthetic associations with any words, feel free to ask. Also if you have any other, more general questions about my specific synaesthesia, they’re welcome too.

I’ll just add for clarity’s sake that it seems like mine is a bit different to what I’ve heard of most people’s synaesthesias, so that I actually for a long time didn’t even call it synaesthesia despite it seeming very familiar and similar and despite I knew about the term, because I just wasn’t sure if it classifies. Even now I’m not exactly sure, but it has to be called somehow, and despite some differences, I guess they generally do count as synaesthesias. As a small kid (that is after I realised that, wow, other people don’t have it like that! which took me quite a long time to understand) I used to think that it’s something to do with my blindness. I still think that it possibly might somehow be related, some way of compensation or something, but that’s just my little theory which doesn’t have to be true at all. The differences for me vs most synaesthetes I’ve talked to/heard of are that there are things with which I have very strong, clear associations, and some that have either always felt kind of muffled, or have faded over time, so that sometimes I may feel for example some vague shape or texture of the word I’m hearing or reading or thinking about, but I’m unable to make out how it looks exactly. There are words, especially ones that I’ve acquired later on, that I don’t associate with anything at all, but it’s not like it’s a rule that I never have associations with such words, it just depends on a specific word I suppose. In languages other than Polish, especially ones with wild spelling vs pronunciation differences like English, I sometimes have separate associations for spelling and pronunciation. I generally don’t have to speak a language to have associations with its words but if something’s super exotic and unlike anything I know I probably won’t have any or clear ones. I’ll often have several things that I’ll associate with one stimulus, for example there might be a word with which I’ll have several tactile associations, or several gustatory ones, or both a tactile one and a gustatory one, or even several of both tactile and gustatory ones. On the other hand, there might be several words that I associate with the same or very similar tactile or gustatory thing. Often when I associate several words with the same thing, it’s because these words have something in common, especially in the way they sound, like, they may have the same prefix. A lot of my tactile associations tend to be things or fragments of things, sometimes a bit distorted I guess, of things that I experienced in very early childhood, but sometimes it’s quite difficult to figure out what the original object might have looked like. From what I’ve noticed, a lot of lexical-gustatory folks tend to have very weirdly specific and detailed, quite hilarious associations, which sometimes is the case with me and sometimes is not. With auditory synaesthesia, like I said it’s only like partial, it’s definitely not like every single sound has some synaesthetic association for me, but those that do tend to be very clear and powerful. Sometimes it takes a while for an association to form in connection to a sound, so it’s after I’ve repeatedly heard this sound, which I’m pretty sure is not a usual case with synaesthesia. Usually the kinds of auditory stimuli I’m likely to have/develop synaesthetic associations with are people’s voices, instruments, an overall sound of a language, pieces of music, some small, short-ish sounds, and when I was younger also space acoustics, I mean what the acoustics were in a specific room. I still remember what sort of synaesthetic associations I had with some space acoustics but I no longer feel it and it feels rather illogical for me nowadays the way it worked, it doesn’t make sense anymore at all, I would even have trouble explaining that in more detail to someone.

So yeah, that’s a bit of an introduction as to how I feel my synaesthesia or perhaps some near-synaesthetic experience works so that you know the basics. I’ll be happy to answer any of your questions whether about some specific stimuli or the nature of my synaesthesia in general, and if you have some kind of synaesthesia, I’m very curious to hear about yours. πŸ™‚

Question of the day.

What would you wish for if there was a genie who would grant your one wish?

My answer:

I would want to speak all “my” languages fluently, as fluently as possible, without having to learn them, especially the basic stuff when you hardly know anything at all in a language yet and you have to learn absolutely everything. A lot of people think that if I keep learning and learning and learning languages I must really like it, as in, the process of learning. But in fact I don’t. I think actually using a language is way more interesting, so if I could just acquire a language on the same or higher level of fluency that I’d be able to achieve via learning consciously, I’d take it, so I could use more time on actually using and sort of consuming the language rather than learning it. I mean, I’d probably still have to learn some things, even natives do, but this kind of learning doesn’t really feel like learning and is far more interesting when you already have a firm grasp of a language. Also learning of some of “my” languages, the less commonly spoken ones, is a pain with the whole practical side of learning, like how you’re supposed to do it, where you get the resources from, where do you practice and with whom, especially if you don’t live in the area where the language is spoken and even more especially if you’re blind so accessibility of things can be limited or there can be other obstacles on the way like lack of speech synths for a specific language or having to learn a Braille alphabet of every single language if you want to read Braille in them like I do. So that would be just extremely cool!

You? πŸ™‚

Question of the day.

What time of day does your energy level start to decrease?

My answer:

It’s actually nothing fixed for me, since my whole circadian rhythm likes to shift around a lot, so it can vary a fair bit, also depending on how I’m doing mentally and all sorts of things. But, very generally, as I think I’m more of a night owl, at least by default, I think I can say that for me it’s more like I tend to start with low energy levels and then they keep increasing. It usually takes my brain some time to get going when I wake up, and I’m also kind of physically sluggish in the mornings as well a lot of the time. It’s not because I tend not to have refreshing sleep though of course this can vary too, I guess my brain is simply the kind that takes its time to boot and I tend to have low blood pressure, and I guess the dysthymia may also have something to do with this. Coffee used to be extremely helpful with this, but now that it’s started to give me really bad anxiety, I can no longer rely on it so I have to use other things that are less effective but eventually my brain will get going on its own, it’ll simply take longer. If I’m peopling a lot during the day then my energy will be draining a lot faster. Currently (that is for about a week) my sleep/wake cycle has been pretty messy and I sleep A LOT, and I can’t even really put my finger on why it’s so because I can’t say I feel tired or sleepy, but once I do fall asleep I just can’t stop sleeping. I purposefully went to sleep very early last night wanting to hopefully wake up reasonably early yet give my brain time to sleep if it needs it so badly, but despite I fell asleep at like 10 PM I woke up after 11 AM! I didn’t even hear my alarm go off earlier in the morning and must have turned it off in my sleep. πŸ˜€ The other night I slept through a whopping 15 hours. Sofi managed to come back from school and I was still sleeping! Such things do happen sometimes so it’s absolutely not abnormal in Bibielland, or, in any case, not extraordinary, but I’m not a fan of it unless I’m really depressed and thus really escapist and sleep feels like the only way to live or when I have super cool dreams but lately it’s been meh where dreams are concerned. But at least I do feel rested after this sleep, so it’s not like it’s all wasted time, and things will probably shift in a few days anyway. So the way it is right now I also tend to start with lower energy that increases over time. But sometimes it can just as well be so that I wake up insanely early, say 3 AM even, and feel very energised, and then my energy will start to decrease around early afternoon.

How is it with you? πŸ™‚

If We Were Having Coffee… #WeekendCoffeeShare.

We haven’t had a

Weekend Coffee Share

in a while, so I thought we could have one today, ’cause I have a couple things to share with you all, and I want to hear how you’ve been doing, too. πŸ™‚ So if you feel like having a cuppa, or something yummy to eat, come along and join me, and I’ll be super happy to have you here! πŸ™‚

Grab a cup of your favourite coffee (we only have black, whole bean coffee in here right now, which I personally think is the best, but if you’d like something fancier you can bring it with yourself). I can also offer you some tea (we do have plenty of these), or cocoa, or some orange juice, or kefir if you like it or want to find out what it’s like, or plain tap water, or you can bring some other drink that you like. I don’t have much interesting stuff where food is involved, if you’re properly hungry and are a meat eater there’s a fair bit of meat left because we didn’t manage to eat everything for lunch, or I can make you a sandwich, but otherwise I suggest you bring something yourself if you’d like a snack with your coffee or something. Yeah I know, bad Bibiel, what sort of coffee share it is without providing your guests with snacks, and a proper variety of coffees. Will try to prepare myself better next time. πŸ˜€

 

So if you’re sitting comfortably and have something to munch and/or sip on, let’s get into it. πŸ™‚

If we were having coffee, I’d ask each of you how you’re doing…?

If we were having coffee, I’d start with the mundane topic of weather and share what it’s been like here this week. Because it’s been quite warm, if not hot, for late summer, at least here. It’s a common thing that late August is all gloomy and rainy, and then the first few days of September it gets maliciously hot so that poor kids who are starting school are melting indoors and want to go out and play but can’t cus they have to do some goddam fractions or whatever else they have to do, but after these few days it usually gets a fair bit colder and stays this way. Well, not this year. This year, the first week of September was very very windy and rainy and quite chilly, whereas this week it was as high as 27 C on Tuesday. It felt a lot fresher outside though than the temps would suggest and was just nice and summery. Then yesterday we got pretty bad rain and storms, and today it’s cooler but still very sunny.

If we were having coffee, I’dfill you in on

the Sofi situation.

In the post above I wrote how Sofi is suspected by her new GP to possibly have Marfan syndrome and that she’s gonna have genetic testing in February. In the meantime, my Mum had been ruminating about it quite a lot, which is not her normal, but she’s now feeling a lot better about it as it seems. Like, whatever will be, will be. The good thing is that Sofi doesn’t have, to our knowledge, any major complications that can arise from this condition, so even if she ends up being diagnosed with it, I personally figure that we should feel lucky that despite this diagnosis, she’s been doing this well so far. Mum agrees with me, and Sofi herself doesn’t think much of it. What had been particularly bothering my Mum, and still does, to an extend, is Sofi’s height, as she’s already like 180 cm and shows no signs of wanting to stop growing any time soon. I mean, maybe she herself wants, but her hormones or whatever is in charge does not. Since the genetic testing is still to come and we still have to wait quite a while, there’s no other news strictly where it comes to Marfan’s, but, as you may remember, all the worry related to that also made my Mum worry that Sofi could have polycystic ovaries and that that may be the reason behind her still growing and still not menstruating. So she had her first gynaecologist’s appointment about a month ago or so, and, while she was extremely anxious before that, it all went well and there were no bad news, everything is perfectly fine with Sofiwhere gynaecology is concerned.

If we were having coffee, speaking of Sofi (wow, what a cool rhyme lol, and yes, in case you’re wondering, this Sofi is pronounced like coffee with an S, not like Sophie because that’s how most Polish people say Sophie), I’d also tell you that recently she got vaccinated. Not for Covid, but for diphtheria, tetanus and whooping cough (these sound really weird in English :O ). She got the vaccine on Thursday, then started having some arm pain in the evening. The next day her arm hurt even more but she still went to school as normal, but when she came back she was feeling horrid. She had a headache, sore throat, achy muscles, couldn’t breathe normally and was very tired and weak and had a bit of a cough. She was supposed to go have her nails done after school, which she did, but as soon as she came back she just went to bed, so it all felt kind of concerning given that she’s normally very strong and healthy. But I guess that could be the exact reason why she reacted to this vaccine so fiercely. She didn’t get up for the rest of the day and by the evening she seemed like she had some fever and it got quite creepy because not only did she have muscle aches but her skin seemed extremely sensitive to touch pretty much all over her and she couldn’t even change position easily ’cause she said it hurt so badly. My Mum claims though that as long as you’re hungry while sick, things are looking good, and by late evening Sofi got a wild craving for fast food so I got her some. When I was a kid I also got wild and very specific food cravings whenever I had fever, and especially at night, so it either must be a common thing that I didn’t realise or it’s genetic for us. πŸ˜€ On Saturday things were a little bit better and Sofi really wanted to go pick mushrooms with Mum, so she did, but she was quite drained by the time she came back and spent the rest of the day in bed. So has been the case today, and she’s also got a stuffed nose. Mum doesn’t really know what to do, since these appear to be vaccine side effects so it seems counterproductive to her to give Sofi some medicines because she thinks her body needs to deal with all this on her own. If things won’t get better until tomorrow, which it doesn’t seem like they will, Mum will take her to the doctor.

If we were having coffee, I’d share with you something about which I already wrote a couple times here, but not much and only in passing. This is not like a huge news or anything breakthrough, but I think it’s worth noting in its own place. This something is that I’ve kinda sorta started learning Norwegian, I guess it was some time in July. I think I’ve written at least one coffee share since but I still had too much turmoil in my brain surrounding it so didn’t feel able to write anything constructive. Perhaps you remember that, as long as my favourite languages list is, and despite it features languages like Swedish, Faroese or Sami, Norwegian had never been on it. And I’m still not sure whether it is now. But for some reason I’ve been feeling more drawn to it lately, and also want to have a closer look at how it works, so that I have some more idea about it other than simply through my Swedish. I don’t know why I’d need it because I could already understand a fair bit of (especially written) bokmΓ₯l Norwegian (there are two written Norwegian languages – bokmΓ₯l which is like more classic and nynorsk which is more modern and rural) via Swedish, but that’s what’s happening right now. I started to realise my feelings for Norwegian were deepening in late June, around the time when we were on our camper trip in Masuria, and Sofi and me rode in the back of the camper, on the bed, where if the roads were bumpy, it made us jump up high to the ceiling, so when people ask me “why oh WHY Norwegian? Have you got a faza or did something specific happen involving this language that made you love it out of the blue?” I say perhaps because I got a brain injury from all the close encounters between my skull and the ceiling on the trip, ’cause I really have no better ideas. I mean, I could tell you now, at the point where I am currently, that I like Norwegian for its extreme diversity, like, it’s one language, but it’s two languages, and in practice, as some say, there are more dialects than people there. πŸ˜€ This definitely contributes to me liking it now. But I only got to experience this phenomenon first-hand after I got into it. And my feelings started to deepen before I decided to go with the flow and get into it and try to learn it. And it wasn’t like these feelings came and I embraced them right away, far from it. At the beginning it was freakishly intense and I didn’t know what was going on and I was really reluctant to do it, actually. I mean, I’m learning Welsh right now, it’s my first Celtic language and it’s more difficult than any language I’ve learned before, have still like a dozen or so languages that I want to learn in the future, Sofi says I should be treated for that ’cause something’s wrong with me, so I seriously can’t afford another language, someone save me or it’s gonna kill me! In the end though, I just had no willpower left to resist my brain any longer and got pulled into it properly. It felt like I had no choice but make room for Norwegian in my life.

The situation isn’t as bad as I feared, since I already know English and Swedish so there’s a whole lot of similarities between Swedish and Norwegian, they’re generally mutually intelligible, and Norwegian and English also share some common ancestry being both Germanic languages. That means it doesn’t really feel like I am learning a completely new language. More like a complicated dialect or something. It’s not like I have to learn everything in a sort of linear, structured way, starting from the very basics, because a lot of vocabulary I’m either completely familiar with or can figure out without much trouble, and a lot of grammar also already makes sense. Also, compared to Welsh, learning Norwegian is also way easier due to the wider availability of all sorts of materials. I’d long forgotten what sort of luxury it is to be able to learn a language via your mother tongue, and there are plenty of Polish immigrants in Norway, so plenty of Norwegian online courses, workbooks, whatever you want. Only problem is that a lot of the Polish material I’ve looked into isn’t of particularly good quality, like they teach a terribly unnatural accent if not plain wrong pronunciation (like you in Norwegian is du, where the u sound is pronounced like in the English word you, while I’ve found a Polish resource where they teach you that it’s pronounced with an oo sound, more like the German du. Except when you pronounce it like that in Norwegian it’s spelled do and it means the loo πŸ˜€ ) or only give you an idea about some stiff, official bokmΓ₯l which might be a thing in writing but no one speaks like that. So I still tend to stick to the English stuff for the most part, and am also able to learn Norwegian in Norwegian itself, especially from written materials. So with a bit of effort on my part, I managed to make it work so that I can squeeze in both Welsh, which is still in the centre stage, and Norwegian, which I learn usually on weekends plus a lot of exposure in the meantime. It feels kind of weird to call it learning though, because for me language-learning is when your brain lets out steam and your brain muscles get all sore and pulsating, whereas here it’s rarely this intense. It’s still enjoyable though. I still wouldn’t say that I love Norwegian as much as I do all “my” languages, but I think if it won’t disappear as randomly as it appeared I’m probably going to get there and I do like it a lot. I mean, I’ve never disliked it, but now I like it more than ever, yet still don’t love like I do Swedish, Welsh & co. Like I said, I love the whole diversity in it and I’m loving more and more how it sounds. It’s so cheerful and childish compared to Swedish, and at the same time kind of more rugged than Swedish and less fluid, to me Swedish sounds more serious and sort of posher.

I don’t even know yet what I want to achieve with this whole Norwegian “learning” and where I want to go, what for etc. but maybe things will clear up. I guess it might come in handy when I’ll start with Sami. Maybe I’ll finally pluck up the courage to read all those Norwegian books my Mum bought me, thinking they were Swedish, including a grammar book from I guess the 50’s. :DBut overall, while I usually try to aim for as much fluency and familiiarity with a language as possible, at least for now I’m taking it very easy with Norwegian and don’t have any wild ambitions or anything, we’ll just see how it develops, I’m not in charge here anyway, my brain has taken over while I was on those Masuria holidays. Who knows, perhaps it’s just a short episode and I’ll soon be over it?

Now that I’m no more reluctant and have accepted the state of things and flowing along with it, I’m thinking that perhaps there’s something like destiny or whatever involved here, because I’ve had several people in my life who have told me in one way or another that I should learn Norwegian. My Swedish teacher started learning it at some point during the years he was teaching me and could go on and on and on about it and would often try to tempt me into it too saying stuff like that, actually, Norwegian is just like a little dialect of Swedish. It made me think what Norwegians would think of someone putting things this way and I thought it sounded quite diminishing. Like, I myself am half Kashubian, and while I don’t have a strong bond with the Kashubian language (I can barely understand it when someone speaks fluently) or culture, and also am far from supporting the separatistic notion that some Kashubians have, one of the reasons being that I personally identify as Polish far more than Kashubian, nevertheless it really irks me when people call Kashubian a dialect of Polish ’cause it’s just not a dialect. One day he devoted the entire lesson to introducing all sorts of Norwegian phrases and idioms to me that he wanted me to translate to prove to me how Norwegian is very easy when you speak English and Swedish. Sure, but at that point I just didn’t feel it, and if I don’t feel a language there’s no point in trying to convince me. It’s as if you tried to make someone be friends with or date someone else just because YOU think they’d make good friends or couple, while the individuals in question feel totally indifferent about each other. Now that I’m learning both languages, I totally agree that, while Norwegian as it is now certainly is not a dialect of Swedish, in many aspects it really seems like it could be. πŸ˜€

Then there was a classmate I had at the blind school, who didn’t know about my Scandinavian interests (which I was trying to suppress at the time because I temporarily wasn’t able to learn Swedish and it was a huge source of frustration to dwell on it or expose myself to Swedish in those circumstances) and for some weird reason he told me several times how in his mind he associates me with Norway, which I found rather hilarious. He didn’t know why either. Later my paternal cousins have come up with some weird theory I’ve no clue how, that we have some Norwegian ancestry. It’s always seemed doubtful to my Dad and my gran and me too, but in the past they would often say how I should rather learn Norwegian than Swedish ’cause we allegedly have some distant family connection to Norway.

And lastly there was my late friend Jacek from Helsinki, who shortly after we first met said that, as much as he praises my learning Swedish and considers it aesthetically superior over other Scandinavian languages, he felt that perhaps Norwegian would have been a better option for me, because of all them weird dialects and because they have two languages instead of one so I’d probably have more fun. All of these people would probably be happy now that it has come true, after all, lol.

I also have THREE uncles who all work in Norway (one full-time and two get sent there from time to time for some longer-ish periods) and one has told my family that apparently he’s learned to communicate in the language decently. He never said that to me, although we have talked about Norwegian vs Swedish several times, and he never talked Norwegian in front of me, but now I have to admit I’m looking forward to some bigger family gathering where all of these uncles of mine will be present so I can break the news to them and we can find out who can snakke (speak) better than Bibiel *evil laugh*. Or maybe I’m in for a surprise and any/all of them actually snakker better than Bibiel, which would be just as cool, they’ve certainly had more exposure than me and more potential opportunities to practice with people! πŸ™‚

If we were having coffee, I’d mention that we’re having a bit of a national Catholic holiday today. This is because it’s the day of beatification of cardinal Stefan WyszyΕ„ski, the Primate of Poland. Beatification means that he is now known as blessed (which is like a step below canonisation when a person is proclaimed saint) and a primate is the archbishop of a country. Even due to his function alone, he was a very important and valued figure in the Polish Catholic church during his life and still is very much valued and respected due to his huge positive influence on the church and aspects like the so-called folk devotion to Mary, to name just one thing. Along with him, another person who was beatified was mother ElΕΌbieta RΓ³ΕΌa Czacka who was the foundress of the religious order who leads the blind school I went to, and also the foundress of the school and everything around it as well. She was blind herself ever since she was 22, I believe, and is said to be the first person in Poland who has taken the problem of education of the blind seriously. This school is relatively well-known and quite a few people who have nothing or very little to do with the blind have heard about it somewhere and back in my school days they would ask my Mum whether I go to THAT school. I am talking about this because now that she and the whole blind centre and the order she founded have been talked a lot in the media and churches in the period leading up to the beatification, I’ve got quite a few people from my family and even beyond, asking me things like whether I’m happy that she’s gonna be beatified, and I found the amount of that and this specific phrasing of the question quite interesting so I thought I’d write a little bit about that and how I feel about it. Am I happy? Yes, I’m very happy! I feel tempted to throw an “obviously” in there, but since I’ve got this question so often perhaps it’s not so obvious for some reason. But I can’t think of a reason why I wouldn’t be happy. We definitely can’t complain about lack of representation of disabilities among saints but the more the merrier, and also I’ve got a feeling that blindness in general has gotten a little bit of spotlight in the Catholic church due to this, because they are telling her story everywhere now and obviously it’s impossible to tell her story without talking about blindness and the blind. Also while I can think of several blind saints, most of them have lived quite a long time ago and when reading about their lives there’s not much you can learn about their experience with blindness specifically, perhaps except for my dear patron saint bl. Margaret de Citta di Castello but she has also lived quite some time ago. So I think mother ElΕΌbieta (or should I be saying Elizabeth in English now?… I never know if you should translate saints’/blesseds’ names or not, it seems so inconsistent) is going to be particularly relatable and close to the hearts of many blind people, and I think that sort of connection is important. I know many who have loved her long before she has been beatified, even if they were too young to know her or didn’t get a chance to meet her personally. I’ve heard of some blind people from that school who actually regard her as a sort of mother figure or something. And beyond that, whether it’s her or someone else, I think a beatification of someone new is generally a very happy event in itself for the Church as a community. My Mum also asked me whether I feel any sort of bond with her, which I think is a more interesting question. We’ve both had the same disability, so on this level I think there is some connection that I feel to her. Also, while personally I have very mixed feelings about both the school and my experience there, i feel grateful to her for the mere fact that she founded it, because the whole thing was extremely courageous of her, and that she devoted herself to the blind so much and on so many levels. One thing I’m extremely grateful to her for is that she adapted Braille to the Polish language. But I don’t feel much of an emotional bond with her like a lot of blind folks do. Or a very strong spiritual one. When I was at school, they’d talk a lot about her and I remember one person once suggested to me that if I struggle with homesickness and stuff like that, I could think of mother ElΕΌbieta as my second mum or a mother figure or something, that some people have this sort of bond with her. I initially really tried and really wanted to, but somehow didn’t feel it. Then not much later I got truly sick of all that talking about it being our second home and stuff like that and I internally rebelled against it all, so there was no way I could think of her as my mum. When I was older, I read her writings and letters and several biographies and a couple memoirs involving her. She was incredibly wise and virtuous and strong-willed and in many aspects very extraordinary and fascinating, and while I didn’t see that at school because I had vastly different outlook on things and vastly different things on my mind, now I do admire her deep devotion to the Cross. Yet when I read her writings she doesn’t come across as someone whom I could truly feel close to. With all her admirable traits and all the great things she did, I think we just are too different for such a close bond to be possible. Or maybe I just have a somehow skewed perception of her despite all the stuff I read about her. And the mixed feelings I have about the school surely get in the way too, even though it doesn’t have to do with her directly. Like I said, the saint I do feel more of a connection to, and who also happens to have been blind and multiply disabled is bl. Margaret of Castello.

If we were having coffee, last, but not least, I’d share about a major purchase I recently made. I got myself an iPad, YAY! Now this is really a huge thing because not long ago I thought I wouldn’t be able to be able to use a smartphone, due to the touchscreen, and now I’m getting a second Apple device. This is because, actually, recently I had been considering a possibility of transitioning to a Mac from my Windows computer. Yeah, I’ve transitioned to a new computer over a year ago, but I’m sure Sofi would be more than keen to inherit this one from me, and also some of its parametres are well above what I need. I’ve recently got to hear a lot about how it looks in practice to use a Mac with VoiceOver (the built-in screen reader) and I was like, huh, this doesn’t sound quite as difficult as I thought. It sounds way more intuitive and non-geek-friendly than Windows. And I really have grown to like the way Apple does things ever since I’ve got my iPhone, while at the same time Windows irks me in more and more ways. Yet I’ve also heard about several blind people who have tried using Mac and it didn’t really work out too well, and because it’s not like I am incredibly tech savvy or anything, it felt risky, especially that Mac OS computers are not the cheapest in the world as everyone knows. So I was playing around with that idea for a long time until I figured that perhaps a cool golden mean would be getting an iPad, because I’ve heard of some blind users who just use an iPad with a Bluetooth keyboard as their primary device rather than a laptop or a computer, which they only use when something is just physically impossible to do on an iPad. Perhaps if I tried that, I would be able to say more decidedly in a couple of years how worth it and how risky for me getting a Mac is. And I guess in a year or two I’ll be able to apply for funding which you can get for an assistive device, and a computer counts as one. Since I don’t need anything more than a MacBook Air, perhaps the funding would even cover that if I’m lucky and counting right.

So in the end I got an iPad 8 and Apple says it should be here tomorrow and I’m really really curious and a little bit apprehensive. One thing I’m kind of afraid of not working out as well as I’d like is typing. I do a lot of writing, but while I have a Bluetooth keyboard for my iPhone as well as my Braille-Sense which works like a Braille Display and Bluetooth keyboard at once, I find writing on iPhone a pretty arduous experience, especially on the Braille-Sense which I prefer for longer writing because it’s easier and faster to review what I write. Except in the end it’s not because the cursor often flies around so it’s hard not to make mistakes, or in some apps it will randomly throw me out of the edit field after every few characters, or it will be very slow and freezy or otherwise buggy. Since iPad is essentially the same system, I’m not sure whether I can hope for much difference there. But it’s not like I am supposed to ditch the Windows computer and rely on the iPad for everything from tomorrow on. If, after a year or a few, I’ll come to the conclusion that I like the Apple ecosystem increasingly and the only thing that stops me from using iPad full-time is the typing, I might still get the Mac as I don’t think it has the same typing issues as iOS devices do.

What would you tell me if we were having coffee? πŸ™‚

 

Question of the day.

What do you miss the most about your childhood?

My answer:

As much as I never looked forward to being an adult and even now still don’t like it and find it kind of intimidating, I can’t say I miss my childhood very much either. Usually, I guess when people say they miss their childhood or being a child in general, they miss some carefree feeling that they remember from that time, or a sense of safety or something like that, perhaps less awareness about things going on around them. I don’t really remember any particular carefreeness that I’d feel as a child, I think I must have been born a professional ruminator ’cause I never felt very carefree for a longer period of time as a kid. πŸ˜€ There was always something I was stressed or worried about and while I often tried to distract myself from that, it only worked temporarily.

I think if I do miss something, it would be the very early childhood, below age 5. I remember that when I was a teenager I often missed being a very small child or a baby, which probably says something about my emotional maturity. πŸ˜€ Not that I have many memories from that time that I’d miss, I just suppose it must be the nicest part of one’s life, when one doesn’t have much of an idea about anything. And most of the memories that I do have from that time are indeed quite happy. Also I’m plain curious because I know from my own experience with myself, and from what my family tell me, that I was quite a lot different personality-wise as a young child. I was definitely a really really weird kid and had my own little, freaky world which was very difficult for complete outsiders to grasp, just as it was difficult for me to grasp that other people don’t necessarily think the way I do and often had no freakin’ clue what I was even talking about, yet when I was like four, or even six, I was a lot more outgoing and socially capable, or even as my Mum claims “happy”, than by the time I was eight, and then since about being 7-8 years old, perhaps earlier, I was gradually kind of withdrawing. As a small kid, I was certainly shy and might have struggled a lot especially with initiating contact with people, but I was quite sociable and when I felt safe with people I always felt very happy to have everyone’s full attention. Most people liked me and I liked people if they didn’t seem scary, I could bond with nice people really quickly. At that time I had more trouble relating to my peers though, which my Mum was initially rather worried about. Some people still can’t get over it that that little Bibiel is gone. And no, thankfully it’s not my Mum. And while I believe there might have been quite a few things that contributed to this gradual yet at the same time seemingly abrupt change, it could be quite interesting to go back to that time and figure out with my current brain how exactly did it happen that that little Bibiel had left the stage. Also it was when I was a small child that my synaesthesia was developing from all sorts of sensory experiences I had, and I sometimes think I’d like to go through that process yet again but with a bit more consciousness to observe it critically, it would be really cool. What I mean is that, for example, a lot of my tactile synaesthetic associations involve stuff that I think I touched or felt as a child, like some of my toys. With some of my synaesthetic associations, I can only feel the overall shape of something, or the texture, but not much detail. And, while I’m sure that some of my tactile associations my brain has just made up, I’d like to go back to those objects or other things that existed for real and see how they actually looked like in full and what they were, and find out why I synaesthetically associate with them what I do. Like, why do i associate my Dad’s name – Jacek – with something as random as a screw cover? I don’t even know if that’s what it’s called in English. πŸ˜€ The round, ring-like metal thing that you can put on a screw. I often liked to play in my Dad’s garage, where he always fixed all kinds of things, and I played with all sorts of weird things, and I’m pretty sure that that’s how a screw cover (and lots of other similar things) ended up among my tactile synaesthetic experiences, but why is it associated specifically with Jacek and not any other word or sound? Perhaps someone, like my Mum, came into the garage and said my Dad’s name while I held it? I really like the name Jacek, plus of course it’s myy Dad’s name, so I have a lot of emotional connection to it, but I have none to screw covers. When I once revealed this to one sister at nursery (the blind school I went to was led partly by nuns), she got quite indignant that I have such odd associatioons with my own Dad. Except obviously it’s not what I associate my Dad with, but the sound and sort of overall vibe of his name. This in no way affects what I think of either my Dad, or any other Jaceks, it’s just a separate thing.

Other than that, I guess I could say I miss how, in retrospect, the world at large seemed kind of better when I was a child. Obviously it’s very subjective because I knew very little about it. But when I think about the world and various aspects of it as it was when I was a kid, vs now, it feels like those 15-20 years ago, life in this world in general was a lot better and more interesting. It feels like less crazy shit was happening in the world, and there were SO many cool things that are now a thing of the past. Think Polish Radio BIS, for example. I’ll never get over this loss, even though I’m sure there’s a lot of idealisation involved on my end. πŸ˜€

Also one thing not really related to my childhood as such, but that did happen during my childhood – I miss Sofi when she was very little. –
I miss the time when she was still a baby and a toddler, and all sorts of funny and cute things she did and said that she now doesn’t even remember, only from what we’ve told her.

You? πŸ™‚

Question of the day.

Why do you close the bathroom door even when you’re the only one at home?

My answer:

Well, I guess you could say I am mildly paranoid with people. Part of it is probably due to my mental health and personality in general, and part of it is blindness. When I’m home alone, or even alone in my room, and doing something that for whatever reason I wouldn’t like anyone to see me doing, I’ll still take all the meticulous precautions even if I theoretically know I’m alone, because how do I know that for 100%? Or people could come back any minute, even if it’s not very likely, because all sorts of unplanned things happen. In my previous room, which I eventually grew to love very much, I had a hard time getting used to living there, because I’d hear all sorts of sounds, especially weird noises from the radiator, and hearing all those things that I couldn’t quite pinpoint where they were coming from made me think that someone is either in my room, or directly outside the window, or by the door, so I felt like I was being invigilated or whatever. Having this sort of feeling for hours and days on end can really make you freak out. Add sensory anxiety into the mix, part of which for me is a totally irrational feeling like somebody (in this case my brain frenemy known to the outside world as “Ian”, is constantly somewhere around), and you get some pretty amazing experience. πŸ˜€

When Sofi was younger, she had a freakishly annoying and kind of creepy habit of lurking in my room and then trying to scare me, thinking that I wouldn’t know she was there. It rarely worked out, because she’s just not a good lurker, plus I’m too hypervigilant for such things to work out very easily. When I’d have the slightest suspicion of her being there, I’d just do something that would make her laugh and she wouldn’t be able to resist. But the less successful she was at it, the more determined she was, and there were a few times that she actually managed to surprise me and even scare me a fair bit. It was quite difficult to get her to stop this behaviour, and over time it really made me quite suspicious of all sorts of things.

Sometimes people don’t even deliberately want to scare me, but as a kid I had situations where my Mum would be sitting quietly in my room, waiting for me without me knowing, or my Dad sleeping in there as he liked to do, and not knowing this and realising after some time could be a bit frightening.

For most of my life, as you guys probably know, I used to live in a boarding school, so I had roommates and some people around pretty much all the time, I also didn’t have my own room in our first house for the first like 10 years of my childhood and our entire family had like one huge bedroom, so some ways of maintaining some level of privacy get naturally ingrained over time in such situation, I guess.

So yeah, I care about my privacy all the time, whether I know about people being around or not. Even if I know that there’s no one else in the house right now except Misha, I have no guarantee that they won’t come back while I’m pooping or laying in the bathtub, and it would be quite a hassle to have to close the door in the meantime before someone manages to see me or get into the bathroom. πŸ˜€ I guess even if I was 100% sure somehow that there are no people and that no people are going to come back while I’m in the bathroom, I’d still close it just automatically ’cause why not? It’s not a bad habit or anything. It just wouldn’t feel right otherwise. I guess even if I had a place of my own, I’d still stick to my habits, including closing the bathroom while I’m in, ’cause… you just never know. πŸ˜€

What’s your reason? Or maybe you actually don’t do it? πŸ™‚

Question of the day.

What do you have too much of?

My answer:

Gosh, lots of things! Some off the top of my head: too much anxiety, not right now but in general, and too many various anxieties as well, too much depression, too much Maggie talk (Maggie’s my inner critic), too much freakiness to put it simply. Too many migraines. Too much Ruminating. Too many deja vus lately, I don’t think it’s normal, but I don’t really mind it. Too much Sleep paralysis (I mean yeah, even one episode can feel like too much but I guess I have it more regularly than most people and it seems to last longer than what I typically hear about. Cat fur in my room and on all my clothes ’cause Misha always sleeps on me or in my wardrobe haha. Sometimes downright indecently too much sleep, but I guess it gets balanced in the end because on other nights I get too little and on others yet just about enough. Too much emotional shit that I hold in, either because it smells too bad so I really don’t want people to have to deal with it or because my brain forgot how to poo before it learned properly, usually it’s a bit of both. Too much daydreaming, not that I’m not happy with it but lately I’ve started to wonder if it isn’t a little bit maladaptive after all, still I like it way too much to care even if that’s the case. Too much imagination, which can get in the way when it comes to anxiety but I’d rather have too much than too little. Too much boobs, which can also get in the way, for example with horse riding back when I did it regularly, but, unlike with imagination, I wouldn’t mind having a bit less of them. Too many moles. Too many languages to love and probably to manage to learn in a lifetime. Too much “colour”, as my Mum calls it, for some people to handle, which results in them finding me overwhelming. Too many clothes that I rarely or never wear because they’re for peopling and I do minimum peopling these days, which typically doesn’t require particularly elegant clothing. Mugs, cups and bowls in my room that I haven’t taken down to the kitchen and washed yet as they keep piling up, ’cause I have too little time for such prosaic things. Most people would probably say I have waay too many gem stones, crystals and stuff. Photos of Misha on my phone, especially considering the fact that I’m blind.

You? πŸ™‚

Question of the day.

What has no reason to exist in 2021 and yet it does?

My answer:

Inaccessible websites, apps, devices, places, culture, formal procedures etc… I mean, I guess some things will always be inaccessible, even just because there are many groups of people whose needs are conflicting with each other, but at this point, when we do actually talk quite a lot about accessibility and when people seem to have more awareness, and, most importantly, when technology allows to make a LOT of things accessible, I think we should be way further than we are with it. Of course since I myself am blind, I know most about what is lacking in accessibility for blind people, but, after all, accessibility is not just for the disabled, or other minorities like people who don’t speak English. Accessibility is for everyone, as having, for example, a more accessible website, also makes it (or should, ideally, make it) more usable for everyone. So I don’t really understand why it’s such a marginalised thing, especially that, in vast majority of cases, it’s very easy to implement, especially if you begin to think about it right away as you create something, be it a device, an app or a museum, as later on you may need to end up starting everything from scratch. As for accessibility online, I think people often forget about the fact that, generally, the whole western society isn’t getting younger, and even if it did and we’d have more children and youth than elderly people, the elderly would still be here regardless, plus people live longer and longer, and think of all the people who are now 40-50+, most of whom are definitely familiar with the Internet and will certainly want to continue to use it as they get older, ’cause why wouldn’t they, and perhaps even more so because it’s comfy and who sane at the age of 95, with arthritis, varicose veins in their legs and bad vision would care about and risk going all the way to the nearest grocery shop when they can order their groceries online and know how to do it efficiently. Except I’m a bit worried that if the snail-paced development of stuff won’t speed up a little, ordering online might be just as cumbersome for the future’s nonagenarians as doing it in person, because not all devices, apps, websites and services may be accessible for those with hearing loss, low vision, impaired cognition or motor skills. And, as much as for someone like me, who’s lived my whole life with a disability, it’s normal that there are things that I just can’t do or that perhaps in theory I could do somehow but they’re not accessible so I can’t anyway, for a person who loses their abilities as an older adult, I can imagine being gradually or suddenly excluded out of things like that would be hella frustrating. So it’s great that we’re talking about accessibility more than ten years ago, and people like developers are certainly doing more, and I’m sure things will keep improving, and like I said I also do realise that there may always be problems because of the conflicting needs of people, or because for some people it might be plain difficult to make something fully accessible, yet I think the progress here could be and should be faster for this day and age, and also that people should have more of an idea that accessibility is for everyone. Covid speeded some things up, but I wouldn’t be surprised if a lot of them went back to “normal” as the world goes back to its normal.

What is such a thing that comes to your mind? πŸ™‚

Question of the day.

We really haven’t had any questions in a long time, so let’s get into it! πŸ™‚

Whether you are single or in a relationship, why?

My answer:

I am single, and there are many reasons for that. I think mostly because I’ve just never come across anyone that I’d love and want to be with, as simple as that. πŸ˜€ I guess it’s quite weird for many people, but I’ve never been not single, have never dated, have never had sex, and have never even been in love. While that kind of reinforces my feelings of inadequacy since it seems to be vastly different for most people, I’m generally okay with that and don’t feel obliged to try to change it, any time soon, or any time at all, unless it comes naturally. Also I guess I still have quite a fair bit of time for it all happening, if it’s supposed to. My Mum considers herself asexual or something like that, she does have sex (obviously, since she has biological children), but has no physical pleasure out of it and no real need for it, we suspect that must’ve been the case with my grandma who has a giant repulsion towards anything even remotely sex-related, but of course back then no one knew about such a thing as asexuality and I suppose if anyone suggested that to her, even that would repulse her, and I guess this could be the case with me (without my grandma’s repulsion though πŸ˜€ ) the more that I was also born with some hormonal issues that often do affect such things. I’m not perfectly sure, because like I said I’ve never had sex so if I did perhaps I’d discover that that’s not the case, and then on the other hand I do consider myself a linguophile because I can get slightly turned on by a language that I love, especially right before sleep, haha, but it’s like I said only a slight thing and not extremely frequent, and generally I have an impression that for most people it takes waaaaay less to stimulate them, to the point where it actually often surprises me how little they need. That being said, of course by never having been in love I also mean romantically, yet I definitely do not think I am aromantic. Regardless of whatever might be the deal with me vs all things romantic and sexual, one thing I do know is that all that involves a lot of intimacy, and intimacy is scary as hell for me, whether it’s emotional or touchy-feely.

Another thing is that, aside from me having never found anyone I’d like to be with, I’ve never been aware of anyone who’d like to be with me. πŸ˜€ Which is fine as otherwise I guess I’d feel quite hemmed, even if he weren’t pressuring me or anything.

And then there’s also that I really don’t think I’m cut out for relationships anyway. I am very individualistic and, partly due to that, partly due to some experiences I’ve had, I still have a bit of an aversion to even mere words like together(ness) or common. I don’t like compromises, I don’t even know how to do them. If someone wants me to make a compromise with them I’ll usually either keep going my way or turn in the totally opposite direction where they want to go and go right after them. Same as I never knew and never liked to cooperate with people at school at all sorts of projects and stuff. If I knew that people at my group were either rather passive/submissive by nature or simply not good at the subject, I’d do everything for everyone as that was easier and faster than explaining and discussing everything, and I didn’t have much patience for that, plus they were happy, or if there was someone who I knew that they had it all together more than I did and had more of a personality, or a few such people, then I would barely do anything, I just don’t really know how to be in the middle with such things. πŸ˜€ Besides, like I said intimacy scares me and how usually people in relationship expect each other to be open. I know and have heard of couples where one person is pretty self-sufficient emotionally, and likes to have a bit of their own space, but the other not so much, and so this other person wants them to do everything together. It would suck if that would be the case with me and my potential husband, especially if we wouldn’t share a lot of hobbies to begin with. And I have a bad feeling, based on a lot of different little things, that if I went into it, I have all the necessary traits and more to end up with someone toxic, or maybe not properly, inherently toxic like narcissistic or something, but perhaps somehow difficult or damaged or something, which, since I have a very particular brain too, could end up making both of us intoxicate each other quite badly. I’m absolutely happy having difficult, weird, complex friends who have had a lot to deal with, but being such a person yourself and having to deal with another such person’s brain 24/7, seven days a week… I’m not this heroic. Also my last therapist, who for some reason was adamant that I need to be in a relationship (perhaps because she was psychodynamic and they’re obsessed with sexuality so she couldn’t help me if I had no sex life πŸ˜€ ) was very encouraging and told me that people “like me” usually have toxic relationships. A lot of her words and opinions couldn’t be taken seriously, but I feel she could be pretty right about that.

Then there are the little big things like that I am Christian, more exactly a (traditional) Catholic, and some stuff that is important for me is less and less important for other people, like such a trivial thing as actually marrying properly and not just going steady or however people call that in English. On the other hand, I don’t want to (and possibly cannot, due to the pituitary stuff) have kids, which on the other hand is usually what people with values similar to mine definitely do want.

Speaking of kids, I would be worried that I wouldn’t have much to offer the potential guy in question. I mean yeah, I have a lot of brains to choose from, people usually consider me interesting or fascinating or something like that, and judging from everything I seem to be considered a good listener, I am empathetic and I think I have a, weird sometimes, but still good for some, sense of humour, I seem to have the sort of shape that apparently appeals to males the most, being skinny and curvy and have reasonable looks, but generally, that’s about it. I can’t do a lot of practical things, I can’t cook, I can’t do a lot of other household stuff or can’t do it well, I don’t want to/can’t have kids, I don’t want to have sex, I can’t drive, I can’t get around outside by myself, I only have a part-time job with a minimal wage which will be over as soon as my Dad retires, I don’t do people… Yeah sure, there are interabled couples, but from what I observe, usually the disabled person is more autonomous than myself. Also when it comes to visually impaired/blind people, I’ve seen research claiming that there is a lot more couples where there is a sighted girl and a visually impaired guy than the other way around, which makes sense and is reflected among people I know. So, I just don’t see it (pun quite obviously intended). I could still be with someone blind, but I don’t want to for several reasons, plus I’ve spent ten years in a blind school where naturally a lot of people were dating at some point, and none seemed interested in me either, unless in the role of a relationship counsellor. πŸ˜€ Which is, actually, quite interesting, because a weird amount of people comes to me with their relationship woes, as if I had any idea about that. But I try to help as best I can. Maybe it’s actually exactly this that brings them to me, that I have like an outside perspective or something. Anyway, even if there was someone who would accept the downsides and want to be with me, I, knowing myself, would probably still have a problem feeling inferior in such an unbalanced relationship, unless I’d feel that there is some field(s) in which I could compensate adequately.

So, all in all, while the unquenchable Aquarius in me is definitely curious what it could be like being not single for a change, I don’t really feel like I actually do want to change it in practice.

Oh, and yet another reason! Dating sounds freakishly stressful from what I hear. I’d probably have to sleep two days in a row to recharge afterwards.

So how’s it with you, and, more importantly, why? πŸ™‚

Today, I…

Recently, I came across this simple, mini prompt in the PaperBlanks app, and so I thought I’d share with you what I am doing, thinking, feeling etc. today.

Today I… feel really tired and sluggish. My sleep has been fairly weird lately, lately meaning a couple weeks, I think. It’s like as soon as it’s night time, my brain suddenly gets a kick of energy and I just can’t settle myself down for sleep, whatever I do. I had a proper zombie day on Friday, having not slept for the whole night, then the next night I crashed as is usually the case with me after a zombie night and so got a lot of good sleep, but my sleep system didn’t reset, for some reason, as it normally does after a zombie day. Today it was back to where it was. Well, except that I actually did feel rather tired and in need of sleep this time around, but was at the same time kind of wired or something and it just wasn’t happening. Since I had to get up at 8 AM, I’ve only got like 3 hours of sleep and my brain’s not impressed. I generally don’t like taking my anti-anxiety medication for sleep even though it does work, but if this keeps up I’ll just have to resort to it for a while, I guess. Since I guess Jack the Ripper is about to visit any time, PMS coupled with little sleep means I’m having a rather shitty day mood-wise.

Today, I am finishing a sort of prayer challenge or whatever it could be called, that I’ve set myself. I promised God and myself that I’ll be praying for three weeks in July, until this Sunday, for someone that I sort of know and am rather concerned about, even though I don’t know him very well. He seems to be dealing with a lot of yucky stuff, multiple addictions being one of those things, and many years ago I’ve decided that I am always going to pay particular attention and have special dedication in my spiritual life to those people that I know or have come in contact with, with whom it seems unlikely that anyone prays for them, or at least not consistently and seriously, despite it seems that they might need it particularly much. I’ve learnt it well in my life that God loves creating what we’d usually call coincidences, and so this time, when I got into it I learned that July is actually considered a month of prayer for people who struggle with addictions. At the same time, addiction is a sort of… hmm, hot topic in my family currently, and my Mum is also praying for someone who has this problem who is our family member, so I felt a bit stronger having company and support like that, especially that my Mum really has been my best spiritual director and always has the strange talent to say or point me towards something that is exactly what my soul seems to need at a specific time. This whole challenge thing has been rather difficult, with a lot of ups and downs, and I wasn’t even sure if I was seriously going to stick to it, I mean, I really wanted to, but some part of me didn’t think I could manage with all that praying, IFing etc. for long. I also often had thoughts that I don’t believe strongly enough in that God could actually do for me what I was asking Him for, because from a human perspective, a dramatic change for the better in this person’s life doesn’t seem very likely and is even hard to imagine. But I tried my best to believe as strongly as I could, and even though I always experience a lot of hurdles with praying, in that I find it difficult to actually concentrate on it properly, I have a feeling that, while I don’t know if I could have put more effort into it, I’ve put a lot more of it than I thought I even could. I am so hopeful for some better, fuller, more valuable life for this person, whatever God considers that to mean in practice for this guy. Pretty much exactly at the time when I took up this little challenge, I also learned about a 30 day Gospel challenge that is a thing now on Hallow (a Catholic prayer/meditation app that I sometimes use). The goal is to read 2-3 chapters of a Gospel every day, so that we’ll be finished with all four Gospels in 30 days. And while I thought it wasn’t for me at first, because I’d never be able to stick to it, and because I’ve always been somehow apprehensive of reading the Bible in English mostly because then I tend to focus on the language more, haha, eventually I figured that the timing of this is very telling, and that I probably should take this up too. I have previously read all four Gospels chapter by chapter several times, as well as the whole Bible, but I initially thought it would be challenging to stick to it every single day and finish exactly in thirty days. But so far it’s going extremely well and I’m actually very surprised! It’s day 14 and I’ve never missed a day. The linguophile in me also manages to keep reasonably quiet, and I feel like I’m more actually engaged into it than I was all those times before, when, despite being Christian, I’d always read the Bible more like I would any other great work of literature, more intellectually than anything else. It is rather difficult for me to just sit down and listen to the Gospel for 20 minutes without doing much else in the meantime, I usually do several things at once and it feels more natural, but at the same time it feels weird to be listening to the Bible while doing something else very trivial in the meantime and give God only part of my attention. So this has been an interesting time in this respect and I’d never have expected it.

Today, I am a little anxious about living practically on my own for the next two weeks. You might recall that in one of my recent posts I was saying that I’m going for a trip into the mountains with my family on Friday/Saturday. The Friday/Saturday eventually was postponed until this coming Tuesday, because my Dad’s leave was postponed until then. Then Sofi decided that she’d like to take our cousin along, as she thought she’d be rather bored otherwise. As I’ve said, I’ve been feeling a bit off recently, very crampy and with rather little energy, and am pretty sure Jack the Ripper’s coming any time, and I started to feel kind of doubtful whether going for that trip is a good idea in my current hormonal and brainstate. So, as our camper isn’t very huge, I thought that was a good enough reason not to go, ’cause our cousin could go in my place. And so that’s what going to happen. Olek is also going to stay, as he always does, since he has work and stuff to do, but he’s out most of the day, so it’ll be mostly me and Mishmish. Which is fabulous, but, like I said, I’m a bit worried. I’ve never really lived on my own for this long, and, while Olek will be here in the evenings and he’ll also bring dinners for us both, so that at least I won’t have to deal with any delivery people or anything like that every day, I’m kind of scared, like, what if something goes wrong? I don’t even know what… anything could go wrong. From Misha choking, to Olek forgetting to clean his litter box, to me letting him slip out accidentally, or having some sort of an accident and doing something to myself, like in the kitchen or whatever, as usually if I do something in the kitchen Mum supervises me more or less, to needing an “eye” to help me with something asap, to having a bad sensory anxiety flare in which case I really don’t cope well with being totally alone. My sensory anxiety has actually been pretty bad this week, and it’s the sort of thing that is extremely easy to set off or exacerbated by thinking about it, more than any other anxiety that I have, so in a way that feels kind of unavoidable, especially if we consider my shitty sleep lately. Still, an equally big part of me is really looking forward to this, and, if things go reasonably well, I think it’s going to be a lot of fun for Misha and me to be pretty much only by ourselves for so long.

Today I am very glad that Misha has been with me all day so far, and not hiding under the bed or anything like that, but properly laying in his own bed, and he’s very cuddly. I hope this state of things won’t change soon and he’ll be like that once my family leaves for the trip.

What has been your day today like? πŸ™‚

Ask me anything about blindness.

I had this fleeting but reoccurring thought for quite some time already, to make a post where I’d give people an opportunity to ask questions about all sorts of things to do with what it’s like to be blind. My Mum and some of my penfriends also strongly encouraged me to do this, but I’ve always felt like I’m not really the best person to do such a thing. I felt that if I was to answer such questions, then I would be kind of representing the whole big community of blind people, and I am not really a very typical representative of it, or at least not in all aspects, so I was afraid that it could be potentially harmful to the community at large if people were to consider my answers something of a general standard for blind people, or that in order not to be harmful, I’d have to constantly explain in which ways am I different and try to answer the questions from as broad a perspective as possible, rather than just my own, which I feared I wouldn’t always be able to do in a competent way. For example, I don’t live on my own, but there are a lot of blind people who do, and I was afraid that by hearing that I do not, people are going to assume that no blind people do and that they cannot.

But I guess that over these almost four years that I’ve had this blog, I’ve finally realised that I have no obligation to represent the blind community if I don’t feel like it, just because I am part of it. I can just represent myself as an individual. If I don’t believe that all sighted folks like K-pop just because Sofi does, why should sighted people believe that all blind people read Braille based solely on the fact that I do? I think I must have gotten the idea from school, where one of our staff told us that we need to be able to eat with knife and fork so that sighted people won’t think that all blind people are not able to eat this way. πŸ˜€

In general, I see that people tend to be either very in-your-face or very fearful of asking disabled people and their families any questions pertaining to the disability. As much as the in-your-face attitude is bad, because I don’t live to answer people’s questions and I may choose not to (not because they hurt my feelings or anything but just because I don’t have to, and even if disability isn’t a sensitive topic for me, it’s still generally quite personal), the fearful attitude, though very often coming from good intentions of not wanting to offend someone, is just as bad because the brain doesn’t like emptiness, so in place of the unanswered questions you create your own conclusions, which might be incorrect, or even quite harmful.

So that is why, in the end, I decided to do this. Perhaps you’re a regular reader and you’ve always wanted to know something but were afraid to ask or simply had no opportunity to do so. Or you’re a total newbie here and just want to know what it’s like being blind. That’s what this post is for. Ask me your questions in the comments and I’ll reply there, or if any questions will require some particularly detailed answer or I decide it could be interesting to expand on I might do a separate post on it.

As I said, I’m not going to be answering collectively as a blind people’s spokesperson or anything, but rather from my own perspective, so what you’ll be getting here is simply one Bibiel’s personal experience. Some bits of my blindness experience may be the same for the majority of blind people, others not necessarily. Still, I know a fair bit about blindness and a lot of blind or visually impaired people, so if you have a more general question I’ll also try to answer it as best I can, even if it may not always be exhaustive. As I’m blind since birth, I’m really not easily offended or hurt when it comes to blindness questions, as I have no idea what it’s like to see, haven’t lost my sight in any traumatic circumstances, and therefore I have a distance to it.

Oh, and I’m going for a summer trip on Friday/Saturday for at least a week, so if you ask me anything during that time you might need to wait some time for a reply, as I’ve no idea if I’ll be able to reply on the go and how regularly.

How do I calm down my emetophobia? (part 1) My story.

 

If you’ve been around on my blog for some time, you know that I like being possibly engaging with my readers. Part of what that means for me personally is ensuring, as much as I can, and as much as that actually goes in line with what I want my blog to be, that people can find here what has brought them to my blog. So I like to go through the search terms that bring people to my blog, either on WordPress or on Google Console, about once a month. And lately, I’ve noticed a surprising amount of my visitors and people whom Google has displayed my blog in the results have been asking it “how to calm down emetophobia?” and similar things.

While I am emetophobic and have written a bit about this, I don’t think they were able to find the direct answer to this question, hence I thought I would write about what I do, or what helps me specifically, to deal with *my* emetophobia, and maybe that will also help some other people who are dealing with this.

This post is going to be divided into two separate parts – one talking in detail but not overly graphically about my experience with emetophobia, so that perhaps if this is something you’re struggling with you might relate to it to some extend, and for those who don’t have the condition I hope I’ll be able to show people a bit of what it’s like, at least from one person’s perspective. The other one will be all about things that have helped me, or still do, or that I know help other people effectively, in dealing with this phobia.

This first part will be a rather rambly and free-flowing post, so if you’re in a full-blown panic attack or crisis caused by emetophobia and need some concrete tips on how to deal with the thing here and now, you might want to skip this part. If you are emetophobic, I want to put a little trigger warning first, just in case, mostly for those who are in a particularly bad place with their phobia. I’ll try my best to keep this post as minimally graphic as possible, but if words relating to the topic are very highly triggering for you, please note that they will be present here. I’ll also be discussing my triggers and telling my emetophobia story overall, mentioning various specific situations from my life or contexts in which it occurred, so some things may potentially feel uncomfortable. Even if you start reading this and feel distressed or triggered at some point, of course there’s no obligation to continue. Just be gentle with yourself.

*****

For those who don’t know what I’m talking about, emetophobia is a specific phobia, which causes intense fear of vomiting. What I mean by intense here is, I guess no one likes to vomit or see someone vomit or have anything to do with vomiting, and I guess a lot of people may have some degree of fear around it, but the degree to which it is present in emetophobia is a lot higher and affecting, more or less strongly, the quality of life of an affected person, so that in some cases it might impact their daily life functioning. The experience of this phobia may vary a lot from person to person, and so one individual with it might be anxious about vomiting themself, whereas for another it’s about other people in their surroundings or in movies or animals etc. doing so, or it may be even more specific like only pertain to vomiting in public. For me, and most people with this disorder I’ve heard about, it’s a combination of more than one thing. The weird thing is, most people who know something about emetophobia or learn what it is, seem to assume that emetophobic people must be somehow very prone to vomiting. In fact, it’s exactly the opposite for a lot of us, including myself. From what I’ve noticed, most of us tend to have pretty resilient digestive systems to begin with, and a lot has to be going on for them to give up and make us vomit, and on top of that I’ve heard that people with emetophobia are just too blocked emotionally for vomiting to occur, which makes sense and is comforting in a way. πŸ˜€ A lot of emetophobics also have their own strategies, like a special way of breathing, which help them prevent vomiting when it’s about to happen. Yet, typically, we tend to remember when was the last time we vomitted, and the last time before that, how long ago it was and why exactly (in our opinion, at least) it happened, along with such details like what was in the news that day or what we were wearing, depending on a specific case of course, not to mention what food we ate beforehand. It’s a bit strange the way it works. I’ve also come across people thinking that emetophobics are afraid of vomiting because they’re afraid they will die while it’s happening to them. Maybe some do, I don’t know. I only know that I don’t. I mean, it would be a horrible kind of death, probably the worst I could wish for myself, but it’s not what I fear the most. Like my Mum still seems to think that I must be afraid of choking on it or something, which I have no idea where she got it from. I mean, sure, this is just another valid reason for why vomit is evil, but it’s not a primary one, not for me anyway, and I don’t think for most emetophobics either. It’s just scary because it’s vomit.

I am scared of vomiting myself, as well as of other people – both because it’s scary in itself and because they may be sick with something contagious and I might get it too, or we may have been food poisoned with the same thing. – I hate the sound of vomiting, gagging, choking etc. and the feeling I get when either I or someone else is vomiting, that everything is out of control. I hate things whose texture reminds me of vomit. I’m afraid when Misha is vomiting, even though he always does it very quietly and it’s very much unlike it sounds in people. It happens to him quite often though so over time it has become a lot less of a deal but it still is a big deal, even though it never is for him. While like I mentioned above, the possibility of vomiting in public seems to be particularly scary for many people, and I do think it is terrifying, I don’t think I’m a lot more scared of it than vomiting anywhere else, whether alone or in company. Sometimes when I have really difficult days emet-wise and am just absolutely sure that I’ll vomit I can’t decide whether it’s better to be alone when it’s happening, so that you can do it discreetly and no one sees it, or with someone around so that you are – well – not all alone with it. I can just never decide on that, either is equally horrid. Also like a lot of emetophobics, I have that weird fear even of the words relating to vomit. These days, my emetophobia is a lot better most of the time than it used to be (or else I wouldn’t be writing this post) but on my worse days, just hearing or thinking about one of these words makes me feel sick-ish. But seriously, what’s up with all languages that their words for vomit, throw up and puke are so creepy? The English vomit is by far the best, although a lot of people seem to prefer throw up. Throw up is WAY too picturesque for my liking! It’s not just all about vomit. The words for gag are scary too. When I was learning about various British dialects and accents, I remember being absolutely mortified at the fact that gaggin’ means thirsty in Mancunian. Who would even still be thirsty after talking about gagging? Also nausea, even though I don’t have a fear of nausea directly. The English word isn’t so bad, I mean it sounds awful but it’s not so triggery. The Polish word is though. My radars always go off more or less whenever I hear someone say in Polish that they’re nauseated, or their tummy is hurting, even before I know if it’s a sick kind of hurting or more a period kind of hurting or maybe something else entirely. Even the word faint in Polish is kind of scary too because for some people it seems to mean the same as nauseated.

When you have a look around emetophobic communities and stuff, people talk about v* (for vomit), n* (for nausea) or d* (for diarrhoea) and, if it helps someone, that’s okay, but I feel like for me personally, such tiptoeing only contributes to creating the tension around the topic. What I prefer to do myself, when writing in my journal or something like that, is, I use a totally different, unrelated word to replace the scary v* with, when I actually feel the need to do so. Same as with my sleep paralysis “friend” whose name I’m too scared to say or even write so I always call him “Ian”. When I write in English, this word for vomit is Moomin. And no, so far this hasn’t given me a Moomin phobia. πŸ˜€

I don’t know how this whole thing has started for me. It feels like I’ve been more or less emetophobic ever since. A theory I have though is that it could have started when I was at around preschool age. I don’t know if I was already going to nursery or not. There was some kind of ball organised for young children somewhere near where I lived, and I was supposed to go there and was really happy for it. Yes, there were such times when Bibiel was happy to go to a ball. As a little kid,I was fairly shy but mostly like “normal” shy, and a lot more outgoing, if not more extroverted, and then at some point things just magically changed. πŸ˜€ That’s what people tell me anyway. My grandma, who really liked to sew at the time, made a special Little Red Riding Hood costume for me, just for that occasion, as that was my favourite fairytale back then. However, on the day of the ball, I was feeling quite funny. I remember that I came downstairs and was about to have breakfast but just as I went into the kitchen, the floor started moving very ominously, I suddenly started feeling utterly terrified, I guess that’s literally what people call a feeling of impending doom, and then I was sick. I felt a bit better afterwards I guess and I think I didn’t want to miss out on the ball, so we did end up going there but, from what I remember, I was still feeling rather miserable and was clinging to my Dad all the time. I don’t remember that, but my Mum says that I also got sick there. Since I can’t even remember that, and generally don’t have any particular feelings around the whole event, you’d think that it would be rather insignificant, but what makes me think that it might be that incident which caused my emetophobia is that I also have an absolutely weird, inexplicable fear of all things like proms, balls, discos, dancing parties, wedding receptions etc. Yes, I’m a socially anxious introvert with AVPD who doesn’t love dancing and has some feet issues, though I don’t particularly hate dancing either as such, but there’s something a lot more to my fear of things like these than any other people gatherings and I always avoid these more desperately and can’t even explain what scares me about them so much. So maybe there’s some link here on a subconscious level or something.

Whether it was that event which started my emetophobia or not, I certainly had some emetophobic tendencies as a kid, though for the first 8 years or so of my life they were quite easily manageable for me. I only remember feeling stressed about it whenever I was seriously feeling sick or about to vomit or when someone was vomiting I would feel as if I were about to faint, but I never actually did, even though I think I wanted to ’cause then I wouldn’t have to witness it. When I was 8 things started to change and gradually I was feeling worse and worse mentally, with both depression and a lot of anxieties, including health anxiety.

At the age of 10 I had a lot of stress to deal with due to various life situations but mostly having an Achilles tendons lengthening surgery, about which I wrote on here many times before, that I found the long recovery process extremely difficult emotionally. I was normally confined to my room during my recovery period most of the time out of necessity as I couldn’t move about easily, but there was one day when I went to school – I was at the so called integration school at the time – because they were doing some kind of theatrical performance. I can’t remember whether I was playing in it too, or just watching it. Anyway, this was the only day during the whole six weeks that I went somewhere for longer and mingled with people, so my autoimmune system probably wasn’t ready for it to happen all of a sudden, and I got some respiratory infection soon after that. I had to take an antibiotic, but it definitely didn’t agree with me, as it always made me feel super sick and weak whenever I would take it, and one beautiful day… Moomin! That was on Halloween! And it is then, I think, that my emetophobia started properly.

I knew that it was probably the antibiotic, but my small Bibiel brain at the time was thinking that if it seriously was the antibiotic, it would make me vomit right away, after taking it for the first time, rather than after a couple days. So clearly it must have been the orange juice that I drank ann hour or so before the Moomins came, because it made me feel very queasy straight after I drank it. So, with all my love for the orange juice, I decided to throw it out of my life permanently. And that’s how I started building my ever-growing no-no foods (and activities) list. Actually I already had some things on it – scrambled eggs (which had made me vomit at the gym in the nursery), bigos (a Polish stew made of chopped meat and sauerkraut), liver, and blood sausage), but that was different, because I didn’t like any of these dishes to begin with, so I was actually quite happy having an excuse that they make me feel awful so I didn’t have to eat them and no one would make me. But after that Halloween, things started evolving a lot more dynamically. After the orange juice, loads of items quickly followed, so that I think theoretically everything was soon included on it, because – let’s be honest and accept the brutal truth – everything CAN make you Moomin! Practically, I did have to eat something, so I broke my own rules, even if I ate very little and only when I really had to, and then felt sick and was convinced that I’m going to Moomin, the matter was only when that was going to happen. Then I learned that you can also kinda Moomin on an empty stomach, so I did start to eat a bit more ’cause I figured that if either way is bad I may just as well eat a little bit more, but it was still just a little bit more, and my no-no list didn’t get any shorter. Back then, things were also complicated by the fact that I had more general health anxiety and a lot of other anxieties, I was just a bundle of nerves. I kept washing my hands all the time, but on the other hand had a problem cleaning my teeth because I was afraid it would make me gag, regardless whether it would make me vomit too. I still have a problem with having things in my mouth that aren’t edible. If someone was sick, no matter how I loved them, I wouldn’t go near them. Which made me feel super selfish. Medications were of course a problem too. If I ever was prescribed something at that time, I would look up side effects and see if Moomin was a possibility. If it was (which it was typically), I would be stalking my poor therapist (whom I started seeing shortly after recovering from that surgery as my Mum concluded that she doesn’t know how to help me anymore) telling her that it makes people Moomin, I’m afraid it will make me Moomin, I know it will make me Moomin, asking her what to do so I don’t Moomin, and hoping that she’ll tell me “No, of course you won’t Moomin, you will never, ever Moomin, it’s impossible!”, but even then I’d still lose my sleep over the fact that there is 0,0005% chance that I will.

I’ve also always had some issues with balance and it’s easy for me to feel dizzy, and of course dizziness was something I’d avoid as much as possible too. Same about unnecessary travelling, especially on roads I weren’t familiar with, as I had motion sickness. I still have motion sickness but I never Moomined due to it so I don’t care about it now really. Forget things like amusement parks, which I despised anyway because of the balance problem but to which I still was forced to go from time to time with schools ’cause all children like it and people like to make children happy because it feels good. Even stress itself was a trigger, and still is to an extend, because my main symptom when I’m really stressed or anxious is nausea. So it’s a bit of a vicious circle as you can imagine and sometimes it’s hard to distinguish between anxiety nausea vs sickness nausea.

Soon after my 11th birthday, something weird happened to me, probably to my brain, that I started feeling really, really ill physically. Mostly, it was just very bad nausea, but I also had a coming and going sore throat and other aches and pains, was very tired, weak and lethargic, and I don’t remember what else, I guess a lot of coming and going stuff, but mostly just overwhelming nausea, so bad that I wasn’t able to get out of bed or even eat anything, let alone things like go to school. Then after a day or a few I would have a break from that, or feel at least good enough to be able to do everything as normal, whatever normal was for me back then, and then again the nausea & co. would come back, and so on and so forth. At the beginning of this mysterious illness, obviously my family couldn’t accept the state of things and that I almost wasn’t eating at all, and that wasn’t even because I was scared of Moomin but I just felt it was physically impossible. I guess my grandma was particularly worried so one day she decided to make Silesian dumplings especially for me. Silesian dumplings are one of my favourite dishes, so, I think if it would be just about my fear, I’d eat at least some anyway, but as it was, I could only take a little bite after which my nausea got a lot worse, so I felt like a proper bitch for not eating them even though she made them especially for me. But it was just physically not doable, no way. My Mum in turn kept going with me from one doctor to another, doing blood tests (which all came back normal) and what not, which I remember I found quite exhausting as I was so tired all the time I could sometimes barely sit upright. Finally I ended up dehydrated so then I was seriously freaked out about Moomin because I could remember being dehydrated once as a small child and then I moomined so I was sure that now I would too. We found a paediatrician about whom my Mum already knew that he was extremely thorough any time he examined a child. Never mind that he said that Sofi was probably going to have psychomotor delay because she still had some neurological reflex that according to the textbooks she shouldn’t have at her age, and scared my aunt in some other way about my cousin not developing quite right. Well turned out that he probably had a knack for finding rare, dramatic diagnoses for children, because when we came to him and he examined me, thoroughly as always, he decided that what I have must be LCHAD (don’t ask me what it is, some genetic illness that apparently is noticeably prevalent among Kashubians, which is where we live and my Dad is Kashubian). That got everyone properly scared, including myself. Having health anxiety, I was already wondering what I may be ill with to feel so awful, and was rather stoically thinking that I’m probably going to die, which didn’t scare me as that was a lot better than the dreaded Moomin, of course, or some illness that would involve Moomin or even a treatment which would have such a side effect. As long as it was just nausea, or even death, I thought I could deal with it. But now with this LCHAD thing, I had no clue what that was, and his explanation was rather enigmatic as well, at least to me as a child, but my Mum didn’t seem to understand a lot more than I did. For the time being, he sent me to the emergency where another doctor started laughing heartily as soon as my shocked Mum told him about my newly acquired diagnosis, said that I of course do not have LCHAD but just need a drip, and probably I was just having a tummy bug, in which case a light diet for the next few days should surely help. As I was sitting there with that drip, thinking what’s better, LCHAD or a tummy bug, a mum with a baby came into the room, the baby had a high fever and was given paracetamol, which it moomined right away.

After the drip I felt a lot better, also emotionally despite that baby incident, because I wanted to believe this drip doctor was right, and so did my Mum, so we went back home. The next day my Mum called the endocrinologist who was treating me at the time for the hypopituitarism, and told her about the LCHAD doctor, but she also reassured her that I surely can’t have it because if it went undiagnosed for so long I wouldn’t be alive anymore. My Mum was immensely relieved. The day after that I felt awful all over again, and so the cycle continued, I honestly have no idea until when. People tried to give my Mum good advice, of course, my class teacher kept calling and asking how I’m feeling, saying that, if I can’t eat, it must be something gastric so I should have a gastroscopy, my grandma was saying that it must be anaemia and I need more drips or something if I can’t eat anything, while my therapist was saying that it’s a psychological thing, which my Mum found offensive. My Mum herself tried her best to force Nutridrinks into me at least and constantly asked me how I was feeling, and if I said that I wasn’t feeling well, she would pause whatever she was doing and be like: “Hmmm…” as if she was deeply thinking about something. I grew to hate it so much when she did it with that specific intonation, it still makes me feel weird when people say “Hmm” like that, ’cause it immediately makes me feel a bit stressed. πŸ˜€

About a month after that LCHAD scare, my worst dream came true and I actually did Moomin. I don’t even know why. My best guess is it must have been somehow stressogenic. It happened exactly at 3 AM and scared the heebiejeebies out of me, of course. I felt dreadful the whole day but it didn’t happen anymore. Neither on that same day, nor the day later, nor any time in the 13 years since then, yay! I associated the incident with cocoa that I drank for supper the day before, and so cocoa was promptly added on the no-no list, and spent a loooong time there. I had become even more crazy with regards to all things food and Moomin after that. And I still kept having these coming and going times when I felt ill.

At some point things got back to normal in that I no longer felt so ill, although I had another bout of it some time in the summer of that same year which was all the worse that we were away on holidays. When I went back to the boarding school after the integration school experiment didn’t work out, I no longer had these bouts of sickness but my emetophobia was still just as bad. However, my school had a bit of a different take on eating than my Mum, who claims that there’s nothing worse than forcing a child to eat, because no child has ever died of hunger when there is free access to food. At school, we were at the very least strongly encouraged to eat all we got without fussing or anything. So I had to start eating more, as it just wouldn’t work out any other way, which then made me endlessly ruminate about Moomin. Still, I tried to eat as little as possible at the same time, and avoid the products that were especially high on my no-no list. At some point, one of the group staff came into my room when I happened to be alone in there and was like: “We need to talk… I know you have a problem… with food. Don’t you?” “Ummmm, why’d you think so?” – I asked, feeling a bit scared and a bit genuinely surprised because I was sure no one would figure that out. – “Well, I once had such a girl in my group. She would also eat very little at meals and then would sometimes eat by herself and only certain foods, I wasn’t born yesterday, I know what anorexia looks like…” Phew! I was so relieved I could have laughed. She wanted me to talk to her or something, I can’t remember, I also don’t really remember what I told her actually, I think I must have made up some story that wouldn’t make her too alarmed but that also wouldn’t deny her assumption, but somehow no one ever talked about that anorexia thing with me again and when I was telling my Mum the story years later she had no idea that anyone had such suspicions.

Over the next few years, my more general health anxiety had quietened down a lot naturally, so that the only health-related fears I would have were either emet-related, or something to do with the brain, ’cause you regular people here know I’m freaked out by even the idea of neurodegenerative diseases and other such things to this day. It has also become less irrational and easier to function with. Having to live in such a fairly structured institution like a boarding school meant that I had to adapt somehow with things like eating, and while I still had my no-no list and my fear was very strong, I somehow managed to eat almost like normal and do other things as normally as I could, even if they caused me a lot of stress. Fortunately, this way, I was also quietly forced to tick off some of the less “dangerous” things from my no-no list. Sometimes for some reason, like a tummy bug being spread around, my anxiety would get insanely high again to the point where, again, I would eat as little as possible and avoid everything I could that I thought had something to do with Moomin, and then over time managed to go back to the apparently near-normal but constantly scared lifestyle, and so on and so forth. Because my way of eating was very irregular as you can imagine, I would often feel a bit queasy after every single thing I ate, I guess kind of as if my body wasn’t used to dealing with food. I would feel very full after even a very small meal, and that would instantly make me panic that surely I’m going to be sick and that something is wrong if I can’t even eat a small meal without feeling off.

I believe that part of why things were changing, even though very slowly, for the better, was simply that I was growing older and from what I know this phobia has a tendency to get better with age.

Things got a chance to gradually improve even more when I got to leave the blind school. By that time my Mum knew a little bit more aboutmy emetophobia, even if she didn’t understand it and still doesn’t really. I think in a way just the fact that I didn’t have to hide with it so much helped me to let go of it a little bit. Since then, I still have times when the only thing I’m able to think about is vomit because someone was sick at night and I heard it because my room is next to the toilet, and I still have times when I eat very little or nothing and restrict very severely what I eat but they are less and less often, and less and less intense. I am less freaked now whenever I just happen to have nausea that is anxiety-related or just not serious, whatever was its cause, and I can differentiate better between serious and not serious nausea. I could gradually and very carefully start to eat some of my more difficult no-no foods that really scared me but at the same time I liked them, and actually enjoy their taste, and then ruminate less and less about what’s going to happen afterwards. I was able to eat out again with less difficulty. It’s still a problem for multiple reasons, not just emetophobia, and I still prefer to stick to safe meals at restaurants, but there were times when eating out was a lot more anxiety-provoking. I’ve become less sensitive to all the vomit words. Of course I still have very bad days sometimes, but things are improving. I also worked a bit on my emetophobia and my thinking processes around it with my therapist, which helped a little.

And by now, I can say that my emetophobia is a lot less severe than like five years ago. It’s still a challenge, sometimes a huge one, but it doesn’t affect my life quite as strongly. I can function with it normally most of the time. There are still foods that I have very mixed feelings about and I still freak out at the thought of eating something expired and have no way of knowing whether it’s expired, I still hate the sound of vomit and can’t stand the thought of vomiting myself or hear someone doing so or be close to them when I know they are sick. But I can sort of deal with a sick Misha in the same room as me. It will always give me a bit of a scare but not bad enough that I’d freak out completely.

Tummy bugs are the worst. They can still really freak me out. When I know that someone in my surroundings is contagiously sick and is vomiting, I still tend to regress and stop eating for the time being until things calm down or will be eating very little and only the safest things in my opinion, and wash my hands and everything around me as often as I can.

I’ve had a tummy bug several times ever since my emetophobia has properly begun, and, while it never made me vomit, the experience was absolutely horrifying each time and recovering from it emotionally always takes me ages.

While like I said before, most of the time I’m now pretty immune to the words related to this fear, I still find them extremely descriptive in a gross way, and when I’m having a worse time anxiety-wise, even not specifically in terms of emetophobia but generally am not doing well, I can still sometimes feel affected by such words.

I absolutely cannot stand hearing the sound of people vomiting in things like movies or anywhere. It still makes me freak out very much. But I’m happy to say that I hardly ever struggle with books anymore, unless they have really graphic descriptions of the thing and very frequent, and at the time I’m also not doing the best, then I may need to give up on the book or at least skip a few pages. The last book I needed to stop reading altogether because of too much vomit scenes was “Tim” by Colleen McCullough, can’t even remember how long ago. I also can’t remember much of the plot line, except that my impression was that someone – usually Tim – vomited in it every few pages and it was really exhausting. I wonder if I would have the same impression now too, or was it just something that I focused on very much then, but I don’t feel courageous enough to try.

There are still foods I’d rather not eat and some that I won’t eat at all because of the emetophobia, but most of them I don’t regret because I don’t care for them very much. I still have problems with meds like antibiotics. I have a very hard time starting on a new antibiotic that I’ve never ever tried before, and I would never ever take the one that made me vomit when my emetophobia started out. And I have no freakin’ idea what I would do if, for example, it turned out one day that I had cancer and the only treatment available is chemo or something else vomit-inducing. Dizziness is also something I struggle with a lot in regards to emetophobia, and it sucks because dizziness or some other kind of floaty feelings and the like are very much my daily reality. There’s still always a strong niggling feeling somewhere in the background of my mind whenever I feel unsteady or dizzy or floaty: “Gosh, what if I’ll Moomin?!”

Going to the dentist is a huge trigger for me ’cause I’m scared of gagging.

I used to drink some alcohol quite regularly, but I stopped because it often made me very nauseous, even small amount. I don’t smoke either, because I’ve known someone since early childhood who claims that smoking causes her to vomit, so I never even wanted to try cigs, but also for other reasons.

I really don’t like public toilets because of the amount of germs and, like… how do you know if someone hasn’t Moomined in there? Maybe the person before you had a norovirus?

Panic attacks is not the most common type of anxiety I experience – my anxiety is more of the chronic and constantly present variety rather than sudden and gripping – but when I do have a panic attack, while most people are scared they’re gonna have a heart attack or can’t breathe, I’m sure you can figure out what Bibiel is most scared of in a panic without me telling you. πŸ˜€

My relationship with food still isn’t the healthiest. I’ve only recently been forced by circumstances to look at this topic more closely and it’s not just emetophobia which is responsible for this, but this is definitely the main thing. My way of eating can still be quite dysregulated and stress definitely plays a big role in how much/little I eat. I’ve been slightly underweight or bordering on underweight for many years, and while I suppose it’s mostly a genetic and hormonal thing, I guess my erratic way of eating/not eating contributes to it too.

So, there you have it. This is my emetophobia story.

If you have emetophobia, what does it look like for you? If you don’t have it, do you have any other specific phobia(s)? What has your experience been with them.

See part 2.

Question of the day.

What’s the strangest/scariest thing you’ve seen in the middle of the night?

My answer:

Not really seen it but heard it, and not just in the middle of the night but for a good few months, but it started in the middle of the night. We still lived in our previous house in the countryside where I had a room in the attic. One night in summer I woke up, I think it wasn’t that scary strange thing that woke me up initially, if I remember correctly I was feeling unwell physically or something like that. In any case, I woke up and couldn’t go back to sleep. Suddenly I heard a weird, faint but clear noise. I still sort of remember what it sounded like but can’t even describe it in a good way, yet I remember that the first time I heard it it reminded me of something like the noise that a sheep or a goat would make, only a lot fainter and shorter and kinda raspy. There was no way there were any such animals in our area so I found this really bizarre and a little creepy because it quite clearly sounded like it came from somewhere in my room. Since it didn’t repeat for some time and I couldn’t come up with a good idea for what it could be, I decided I must have imagined it, but I couldn’t settle back to sleep. And then I heard it again. And again, after a while. And again. And a few more times. Sometimes hearing a sound to which I can’t attribute a source can really trigger my sensory anxiety, and I think it can be potentially scary for a lot of people even when they don’t have the sensory anxiety problem. In order to be able to fall back to sleep and not freak out completely I tried to think that there certainly must be some normal, prosaic reason for why I was hearing this, I just simply didn’t know what it was. I finally managed to fall asleep, but to my fear and frustration I could still hear it. I asked my Mum what could it be, perhaps there’s something in my room, but she had no idea. She came up there, but couldn’t hear anything, so she said I must’ve been imagining it at night like I thought. Only I could still hear it at regular intervals throughout the day. And the next day, and for the rest of the summer. Eventually I sort of got used to my invisible, creepy roommate, invading my little Bibiel haven, but it was really annoying, and when I was home alone, when it was really quiet or the night time, it would still creep me out, even just the idea that no one else hears it. So what does that mean? Am I going crazy? My Mum tried hearing out for it multiple times ’cause I kept complaining about it but the malicious thing never made the noise when she was in the room, or if it did, she wouldn’t hear it because we were talking or some other noises were masking it. When I mentioned it she laughed that I must be smoking something and that it’s not fair that I won’t share with the rest of the family. πŸ˜€ Dad often had a habit of taking a nap in my room, ’cause it was the quietest, which I utterly hated because he snores, as Sofi once said, like a million of dinosaurs. Still, I was hoping that one time when he comes, before he falls asleep, or after he wakes up, he’ll hear it. Thing is, my Dad falls asleep immediately, doesn’t even need five minutes.

The summer holidays had finished and the new school year had started, so I went to school and wasn’t home for the next at least two weeks. I hoped that by the time I come back, my roommate would get bored not having anyone in there to creep out and would magically disappear just as he appeared, or maybe Mum would find him. No such luck. I remember that when I came home I guess just for a weekend, I went upstairs to go to sleep, and when I was already falling asleep, I heard it again. And that was the case for the next few months, I don’t know how long. Finally, at some point Mum did hear it. She was relaxing in my room, and I was there too, and at some point we both heard it and she was all like: “Gosh, what was that?!” Then she kept looking around the room to locate the thing, which wasn’t easy, because it wasn’t very loud and only made the noise once in a while. Finally, she found it. Under a bean bag, there lay Sofi’s old toy phone, and right when she discovered it, it pleaded guilty by making that noise again. Its battery was dying, so that was why it sounded so weird. Sofi was no longer interested in it, so the phone went to trash, which I felt evil satisfaction about. πŸ˜€

And how about you? πŸ™‚

Question of the day.

What is one old piece of technology you can’t bring yourself to part with?

My answer:

For starters, it was less than a year ago when I finally decided to take the risk and part with my good ol’ Nokia E66 with Symbian. For most people, that’s really strange. Even many blind people don’t understand things like that because, yes, smartphones can be a very helpful assistive technology, and many think that the only explanation for when you cling on to your old phone must be that you’re afraid of new things. Which, admittedly, was partly true in my case, as I typically dread change, but that’s only part of it. I would often tell people, and also here on my blog, that the reason I was still clinging to it was my loyalty to Finland (Nokia is Finnish, in case you don’t know). And, honestly, we’ve been through so much together during those ten years. And she was working perfectly fine, so why fix what ain’t broke. Although in those last few years I didn’t use this phone very extensively as I hardly ever talk to stranger people on the phone and don’t feel the need to talk on the phone to people I know ’cause we either see each other IRL or can email, and emails are also way better and more interesting than texting. But mostly, what held me back was that I didn’t think I could deal with a touch screen, and that’s not because of my lack of sight, but more the associated stuff. As you likely already know, I also struggle with coordination and dexterity, and have a hard time with spatial orientation be it on a big or small space. My previous experiences with other people’s smartphones (usually with Android, which is a bit less accessible, and its free TalkBack screen reader) weren’t particularly encouraging either. I did know that you can use a Bluetooth keyboard with iOS and there are various accessibility features that can make it easier but didn’t think that would be enough for me as you can’t do every single thing on iOS via the keyboard because it’s just not made this way really. But then as I’ve already written on here, Sofi got her first iPhone and let me use it, and while I still wasn’t convinced that I could find my way in the world of touch screens, I felt like perhaps it would be interesting to just try. I could buy myself an iPhone and if it won’t work out, I can simply sell it and come back to my old Nokia. Also I would need to find myself some other phone sooner or later, as even if my Nokia will keep going for the next 50 years, it soon won’t be supported and won’t have service, so it would feel safer to experiment now than last minute. Now that Sofi has an iPhone she could help me figure it out and maybe it’ll even work somehow. Then I came across a review of iPhone SE 2nd generation by some blind guy who also has dyspraxia, where he also mentioned that he uses a keyboard and, while in his situation it’s not ideal either, it works way better than the screen. Based on the review, he was a rather advanced user, so that really made me think. I do not have dyspraxia, my difficulties aren’t as severe as that, so if a dyspraxic person can manage an iPhone with a keyboard and use it efficiently, perhaps I could too. I definitely should try, that’s for sure.

And I did, and, as you know, I didn’t sell my iPhone. In the end I decided to use it in combination with my Braille-Sense which is a Braille notetaker which can work as a Braille display plus keyboard with the iPhone, although I do have a little keyboard as well which can be useful as it’s more portable and less clunky, and I can do most things this way. I do find it quite laborious to use the screen itself, but can do it if I have to and have gotten used to the laboriousness. I’m not the speediest iPhone user for sure when I have to do things from the screen, and I have to take my time to do some things, but because I theoretically know how to do most things on the iPhone, I can practically do pretty much everything I want to do, as long as it’s doable with the screen reader and as long as I have the time and patience, which I typically do. Well okay, my pics are still quite bad and I know some blind people do better, but that’s a bit of a different kettle of fish, and sometimes I also manage to take a decent one without any assistance. I still have the Nokia though. Just so it can work as an exhibit for future generations. πŸ˜€

But there’s still one old piece of technology I’m holding on to, despite I theoretically don’t have to now that I have the iPhone because the iPhone could do that job. It’s not quite as ancient, actually the current one I have is only over a year old, but generally the technology in it isn’t particularly cutting-edge for our current standards, so much so that many features it has that rely on external services are no longer supported because its firmware is a bit outdated and I guess no longer developed even though the device is still sold. It’s basically a specialised device (with a very specialised price, as with most of them) for reading books and playing multimedia. You can read ebooks on it with a speech synth or audiobooks, listen to music, podcasts, radio, record audio, it also has a calendar, alarm and other such little gimmicks which you wouldn’t normally expect from a multimedia player. Now that smartphones are being very widely used as assistive technology and many expensive, special assistive devices with limited capabilities have a hard time competing and don’t even try, book players like that are seen more and more as something for elderly blind people, say, such who have lost their sight late in life and don’t necessarily feel like dealing with an iPhone, especially if they wouldn’t even feel like having a smartphone if their sight was good, and currently sold “dumb” phones don’t do screen readers.

Why would I use an outdated and pricey thingamajig about which even its own producers forgot when I have an iPhone which can do its job just as well? Well, comfort is key when reading books. PlexTalk is smaller than my iPhone and easier when you want to read for example while commuting. It doesn’t have a touch screen, which could be accidentally activated while you go about your business with it in your pocket or bag. It’s faster to use for me personally. And, what Bibiels like best is reading in bed for a while before sleep or after waking up when I have the time. At the same time, Bibiels don’t do silence at night, so there has to be some music quietly in the background, or a radio station where they talk some fabulous language, it’s good to have a soundtrack to your dreams as long as it’s not too loud or intrusive. The music for a long time used to go from my computer, but my current computer is super noisy and that’s very uncomfortable for sleep, makes me feel like I’m having a sleep study in a lab rather than sleeping in my own room, and my speakers are also weirdly noisy in themselves, making the weirdest sounds, and I can’t seem to be able to fix that in any way, I guess it’s something electrical, which is okay during the day but not at night. So now the way it works is I have my lovely little B&O speaker which I connect to the phone, and it plays. iPhone, as you may or may not know, only supports one audio source at once, so I can’t possibly both listen to music and a book at the same time from it, and then maybe even set a sleep timer for the book, but not for the music. Not doable. Even if I could have two audio sources play at the same time, I think it could get quite overloading if they were both playing from the same device unless you could manage the volume of both separately.

So yeah, there’s an amazing app for reading ebooks, or texts in general, called Voice Dream Reader, which has speech synthesis for many more languages than the PlexTalk which only has, in my case, Polish and English, there’s even the Jacek voice on Voice Dream Reader, the one that I really like but have lost and which is no longer produced in the form in which I had it, so you’d think I’d be super happy to use Voice Dream Reader and have Jacek at least in there. But no, reading on the phone totally doesn’t go along with my habits.

One of the secondary reasons which finally led to me getting an iPhone was that the support of Audible audiobooks had ended for PlexTalk last year. That was super dramatic, as I had only started using that feature extensively and the only reason for why I decided to buy PlexTalk again after my first one broke, instead of another, fair bit cheaper, device of the same kind was the Audible support. I wrote to the Audible peeps describing my situation and asking them if they could have some mercy on people with assistive devices so that their users can somehow still use their audiobooks despite the old format being ditched. They wrote me very diplomatically that they don’t really care, and I guess they couldn’t even do much about it if they did. I wrote to Shinano Kenshi (PlexTalk) peeps, asking them very diplomatically if they could finally update their flippin’ dinosaur firmware so that it could perhaps support the newer Audible format, which, in fact, sounds way better in terms of quality and has been around for a long time before so it’s not like it’s super new. They didn’t even get back to me, which wasn’t a surprise, as I had a feeling they have limited their activity around PlexTalk devices to only what’s absolutely necessary. Then, months later, when I almost forgot about that email, I got a response from them, diplomatically saying that, um, yeeeeah, maybe it is possible, but it really doesn’t pay off, too much bother.

Now, I have Audible on my phone, but I hardly ever use it, for the reason I wrote about above. The good thing is I now have pretty good access to English ebooks instead that, with a little playing around, I can easily read on PlexTalk, so it doesn’t feel that bad not to have Audible on it.

Do you have such an old device? Why is it so difficult to part with? πŸ™‚