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™‚

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 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™‚

Question of the day.

What’s one thing you absolutely want to do, given the chance, before you die?

My answer:

It’s nothing unpredictable for people who already know me. The thing I particularly want to do out of the things I want to do before I die category, is to, hopefully, learn all “my” languages to such a level that I can understand them without too much difficulty. I don’t know how realistic it’ll be, given that some of my languages are extincting, or already extincted and revived, and thus the amount of resources available to learn them is limited in comparison to, say, English, or even Swedish, and also I don’t like the idea of having a very long life. Plus there are other problems, including, but probably not limited to: because I am blind, the amount of resources shrinks even more; I live outside of the territories where these languages are spoken and with small languages like that it is a big deal, it may be difficult to find native speakers online, for example I still don’t know any Scottish Gaelic native, or a Sami one; some of them don’t have their own Braille alphabet and I do find it a lot easier when I can read and write in a language and not only listen, some don’t have good speech synths or none at all, for example there’s no Cornish speech synthesiser ’cause it doesn’t pay off for sure to make a synthesiser speaking a language that was once dead and then resurrected but still has like 500 speakers, and there are probably more things that can get in the way that I can’t think of right now. So while I don’t really know how well that will go in practice and how much of it is actually achievable and how much is just Bibiel’s lovely little dream like a lot of things have turned out to be, I’m going to do what I can do to make it work and to learn as many of them as possible. I’m doing quite well with Welsh, which is an endangered language, even though the beginnings were quite hopeless and infuriatingly frustrating, but that has been the case with every single language I was beginning to learn, so I’m taking the risk by being carefully optimistic about the rest that things will go well after some initial significant upheavals. We shouldn’t forget that technology also keeps developing so who knows, maybe those resources which aren’t accessible for me now will become later on.

You? πŸ™‚

Question of the day.

Would you ever send your kids to boarding school?

My answer:

In strictly practical terms, no, because it’s highly unlikely I’m ever going to have kids, for several different reasons (the fact that I’m blind isn’t one of them, despite what a lot of people think πŸ˜€ ).

Hypothetically, it’s… complicated. As someone who spent 10 years in a boarding school and mostly didn’t like it to put it very concisely, I’m normally inclined to say NO WAY. It’s not that I think boarding schools are bad in general or that my school was bad, I feel like you really have to have a valid reason to do so, unless your kid is like in high school and actually wants it herself because she thinks it’s very cool. Then she has a more or less developed character so you can figure out whether it’s actually a good solution for her. With younger children, unless they have some special needs, disability or severe behavioural problems and there really is no other option, or you’re from some family where education is a priority and you want your child to have the best education possible in the fanciest school in the country because otherwise they’ll be a black sheep in their circle; I can’t think of a rational reason why anyone would want to send a younger child to a boarding school.

In my experience, when I mention someone about my being in a boarding school and not having the best time there, people often jump to a conclusion right away that it’s my parents who are to blame because they should know better and get me out of there earlier if I was struggling. Even my Mum used to think like this and I think she still has some guilt even though I don’t blame her at all. But I really don’t think my parents had a better choice. We had tried one alternative and it didn’t work out for me. And, as I think I’ve already written on here before, boarding school can have a fantastic influence on a child, or it can fuck them up, and you just cannot predict it in an easy way when the child is very young.

I always feel for any child when I hear about them going to a boarding school, even if they don’t feel for themselves at all. That’s just how my brain works now I guess. πŸ˜€ So, based on my previous experience that was mostly negative, it would be only natural that I wouldn’t want the same to happen to my child. Often I even wonder how I’d cope with sending a child to a normal school, and whether I wouldn’t transfer my anxieties around that and my less than enthusiastic attitude towards the education system onto the poor kid before they’d get to form their own opinions and figure out how much they like/don’t like school. I’d probably prefer to do homeschooling/flexi schooling or something like that (I always wanted to be homeschooled as a kid, like that was my biggest dream) only I’d surely have no patience for it and I dislike teaching other people.

On the other hand, I have such a weird tendency though. My Mum said half-jokingly that I should count this as yet another reason not to have kids, and yes, I sort of do. πŸ˜€ I feel like I’d probably be a very extreme parent. Either, like I just said, over-protective, shielding and molly-coddling or sometimes I feel that I would actually do just the opposite thing. I would send my kid to a boarding school, to make someone feel the way I did. I don’t know if it makes sense. I do know though that it sounds very immature and cruel, but I’m not gonna have kids anyway so I don’t think it really matters. Ever since I was a child, I had a weird sense of pleasure of reading books about kids who were sent away from home or had no family or something like that, firstly because I found that more or less relatable, and secondly because it made me see that there is someone who has it worse than myself and it made me feel better. There was one such Polish series I read as a child, (“Ania Z Lechickich PΓ³l” (Anne of Lechite Fields) by Maria Dunin-Kozicka, in case it tells you anything), it wasn’t really for children but it followed the main character – Ania’s – life from her childhood until young adulthood and it’s title was rather suggestive that it was for children, like Anne of Green Gables or something, so I guess that’s how I ended up reading it. Ania, after living a few happy years in a very loving family is sent off to something like an orphanage, because her father died and her mother married her rich childhood friend, who didn’t like Ania, so he arranged it so that her mother would think it’s just for a short while. Then WWII came, and the orphanage relocated to Ukraine, without the family knowing, because of course no one knew she had a family who would be interested in knowing that. She does eventually find a very loving adoptive family and then reunites with her biological siblings as an adult, but the first part of the series describing her childhood is quite harrowing given her personal situation and how painful it is for her as well as the war in the background. And, while I felt for her a lot, in a way it also made me feel good that this girl, even if fictional, had it so much worse and I enjoyed reading about all the difficult stuff in her life.

So, yeah, I don’t really know. Maybe I’d be a very bad mummy and send all my kids to different boarding schools all over the country, or maybe I’d be a good-bad, nurturing and obsessive mummy who would dote on their children all the time like I do on Misha and keep them locked at home like I do with Misha as well. πŸ˜€

You? πŸ™‚

Question of the day.

What do you do for exercise/recreation?

My answer:

I used to do a lot of horse riding, which was my main, if not only, form of exercise for many years. I’m not really into any other sports, nor am I good at them. I started with it in primary school only in the form of hippotherapy, because that’s what is mainly done at the stud where I go to, as it mostly serves disabled people, most of them quite severely disabled with severe forms of cerebral palsy and severe things. However, my hippotherapist is also a riding instructor and at some point she suggested to me that we could do more of riding as a sport, since I don’t have a severe movement-related disability, and do just elements of hippotherapy in it, which I was very happy to do. I also participated in some local competitions for disabled youth. Now though, things with my horse riding have been suspended for a looong time and I don’t really even know when/if they’ll go back to normal, for several reasons. First there’s the pandemic now. Even if it perhaps is an option for some people to do sports while wearing a mask (I have no idea how they do it) it is definitely not an option for me, because despite I’ve been riding for years, I’m at the same time allergic to horses and while this allergy is mild enough that it can be super easily managed with anti-allergy meds before and after the ride, I still do experience some mild respiratory symptoms of it, and having to additionally wear a mask would make breathing rather tricky. Social distancing wouldn’t work either because my riding instructor assists me a lot of the time especially when we’re somewhere that I’m not familiar with or when I’m learning some new technique or something or sometimes she holds me when I do some exercises on horseback that I feel insecure about because of balance stuff.

Besides that, even before the pandemic my instructor has had a crazy life. She had a breast cancer two years ago, which thankfully is a thing of the past now, but as she says it made her change her life and realise that she wasn’t prioritising the right things before. Besides being a horse riding instructor and hippotherapist, as well as a keen equestrian herself, she is also a very busy neurologist by profession, and a mum of a primary school-aged boy on top of all that. Before the cancer, I remember her as being always super busy and in a hurry and she kept saying that she wished a day would have more hours so she could squeeze more things in it that she had to do, yet she was also always very positive and energetic and rarely seemed very tired or worn out with all the comotion going on in her life. Yet when she got the cancer and several other things started going wrong in her life at the same time, it made her realise that she really needs to prioritise her mum role over her professional life, and maybe focus some more on her own riding for pleasure, which she had very little time and opportunity to pursue because she was constantly teaching other people and she had no time for riding just for the sake of it. That meant that she decided to slow down with work a bit and also with the stud, so I was seeing her less often. Then there was also some financial trouble they were having with the stud, and then my horse – ŁoΕ› (or Elk in English) – the one on which I rode primarily, died. All the horses at the stud where I go are older, often have some diseases and stuff or have had difficult or traumatic experiences before. ŁoΕ› was no exception, he was in his 20’s and had several illnesses, but ultimately died of bronchitis. Because my horse riding was very irregular already then, I only learned about the fact a lot later and it was a huge shock, because we’ve known each other for like ten years and we were a really good team, even though he would often fall asleep or get lost in his daydreams while I was riding him. πŸ˜€ After that, when I did go riding, I would usually ride on another horse – Rudy (or Redhead in English) – a very cute fjord horse whom I used to ride already before whenever ŁoΕ› had a day off or something and we knew each other well, and I really do like him very much as well, in fact, in a lot of ways, Rudy is easier to ride because he’s a lot smaller, lighter and a lot more sensorily perceptive so riding him requires a lot less strength and muscle effort, and he’s also a LOT shorter so I feel less insecure in terms of balance. But at the same time I never felt like we get along sort of emotionally as well as we always did with ŁoΕ›, we’re on quite different wavelengths while with ŁoΕ› we clicked instantly, so much so that even though I used to be scared of riding before, it miraculously changed the first time I rode him, or at least got alleviated enough that, despite the anxiety, I was able to fall in love with riding enough that I wanted to continue it even though I’d always be very nervous beforehand. He always was extremely sensitive to my feelings and especially when I was anxious. Often, even just his presence made me feel more at ease, perhaps because he was absolutely, unbelievably phlegmatic, like you’dthink absolutely nothing can phase him as if he was half-asleep all the time. πŸ˜€ Rudy is a lot more lively, which is super cool because you can have more fun with him and generally do more spontaneous things, but we just don’t have as much of the emotional connection and he’s quite anxious himself so my anxiety makes him more anxious and vice versa.

Then during winter before the pandemic has started, I got that weird, recurrent thing on my calf that I sometimes get during winter, apparently it’s similar to eczema but I don’t know really what it is or what’s the actual cause, anyways, it takes ages to heal and it hurts when walking and stuff or when something rubs on it which is quite hard to avoid when you’re riding and have riding boots on. So during winter I stopped riding completely. I’m always massively frustrated when that leg thing happens to me because as you can figure out I do love riding very much, but that year, my frustration was accompanied by a hint of relief that I won’t feel obliged to ride. Because the last few months of my riding, I found it more difficult than before. I wrote here many times before about my first experiences with riding in nursery and how I didn’t really like them and found horse riding super scary because of my balance problems, but how I then got into it later at our local stud because Mum read that hippotherapy would be beneficial to me. Even though I ended up loving horse riding, partly because of my very competent instructor and her being able to understand my issues around it, and partly due to ŁoΕ› magic, I never fully got rid of the anxiety and always felt quite anxious before riding and it took me some time to relax. Some times were worse than others. And I guess after ŁoΕ›’s death things got a bit worse generally and it became more difficult for me to feel at ease when riding, so that finally at some point it started to become more and more of a struggle for me to actually motivate myself to do it, and was no longer as much of a pleasure as it used to be.

So now, having not ridden since before the start of the pandemic, I don’t know if I’ll get back into it. I’d love to, I miss being in the saddle, I miss that feeling when I am finally able to relax my brain and my muscles while riding and I miss how freeing riding can be once you relax, I miss Rudy and I miss my instructor, with whom I really enjoy talking. But on the other hand I’m not sure, I just have super mixed feelings about it. Also I know that, while I’ve experienced a lot of benefits from horse riding, at the same time it’s very paradoxical that that’s the sport I’ve been doing, because I lack pretty much all the skills that are said to be required to be a good rider. My balance, coordination and sensory integration are all fairly rubbish, and I’m allergic to horses on top of that. Still, I’ve been told that I’m a pretty good rider despite that, given my possibilities, and I do feel I’ve achieved a lot and am quite proud of myself in this department. Being an equestrian is definitely a part of my identity since I’ve been doing it for years, and it would feel weird to decide that I’m no longer going to do it. And I don’t have as much interest in any other sport or physical activity, so I don’t know what I’d do instead. Yet at the same time I think it’s not really something for me because of my difficulties. I just don’t know.

But because I don’t do horse riding for now and I haven’t yet made up my mind on whether I will or not, I think I still need to do something so that if I decide to go back to it, I won’t realise that I’ve regressed physically. Therefore, I regularly go for walks with my Mum when we both can, often quite long ones, which I like as it can be a good way to clear your mind, although not as effective and cathartic as horse riding can be. I also do some low-key core exercises at home that my instructor recommended to me and that I also used to do in between my riding days, which I consider fairly boring as any form of workout so I’m not always as systematic with it as I should, these days, but it’s just to keep my muscles in some kind of shape.

How about you? πŸ™‚

Question of the day.

Are you an early riser?

My answer:

Yes and no. I think I wrote about my crazy weird sleep a lot on here. I don’t like the morning lark/night owl classification of people, well I don’t mind it in general but it just doesn’t really work for me personally because I could say I’m sort of both and neither. πŸ˜€ And I’m sure I’m not alone with this. So in this post, I’ll go beyond just answering the question and try to explain in more detail why this labelling doesn’t work for me and what’s the deal with my sleep exactly, especially for those who don’t know me outside of the blog.

Basically, if you don’t know about it yet, I’ve been totally blind since birth, and totally also includes no light perception, so, quite naturally, my brain has always been more or less confused what time of day, or night, it is, so instead it decides on its own. There were times in my life when I was quite frustrated about this but generally I’m used to it and it’s just how it is.

Whenever my Mum talks about what my siblings and me were as babies and toddlers, she always says that she had no big problems with me in terms of behaviour then, except for sleep, and she learned quickly that mid-day naps were not for me ’cause then I’d be full of beans for most of the night, and that would of course affect my parents as well. I now know that there is something called non-24-hour sleep/wake disorder, which is a circadian rhythm disorder affecting mostly totally blind people, but I only learned about it as an adult and I’ve never found any resources about it in Polish so I don’t think anyone in my surroundings as a child even had an idea about it existing, plus even though a lot of problems that people experience with it sound familiar to me, I’m not sure that that is exactly what is the problem with my sleep, because it’s a bit different for me. I’d say it’s kind of more irregular, but at the same time I guess I seem to struggle with the whole thing less than most people with the condition and it’s easier to manage by things like avoiding naps, while many people who actually have non-24 diagnosed or are very sure of having it don’t seem to be able to resist the urge of napping as easily as I can, and no, I’m not particularly self-disciplined at all, although I do hate naps because they turn my clock upside down, but there are times when you just can’t fight it. I guess in my case, it must be quite a mixture of things causing the circadian rhythm situation that I’m in. I was born with hypopituitarism, and of course pituitary regulates a lot of things, and according to my Mum it’s circadian rhythm as well. I was taking growth hormone injections as a child as I had a deficiency of it and I remember reading somewhere that this hormone plays some kind of a role in regulating the circadian rhythm. And then of course there’s all the mental health stuff on top of it and it definitely has a strong impact on one’s sleep.

At this particular point in my life though, I’m happy to say that it doesn’t really matter whatever the name of my sleep problem is, because I can adjust my life to my brain’s whims if need be, having a very flexible schedule and being in charge of my own time for the most part, not having to work at strictly set times or anything like that, which is a great luxury after having had lived a very structured life earlier at the boarding school, where I felt quite sleep deprived a lot of the time, not just because of the schedule but also because I would often stay awake at night willfully when I could, to be able to do something more than the usual school stuff, like write the Jack Hamilton novel, journal, listen to music or just plain be with myself and my own thoughts, which I felt was essential to my mental wellbeing and for which I didn’t have a lot of space during the day but which also made me a zombie the next morning. I don’t think that, even if I had a diagnosis and a label for it, someone would actually be able to offer me a lot more help. I have an impression that accepting it as something that is a part of me (which of course wouldn’t be as easy if my life right now looked differently) and not fighting this all the time has actually improved my sleep situation over the last five years.

Usually what people say to me when I tell them more about my sleep problem, regardless whether they’re just casual people or some professionals, is that I should try melatonin. Since it’s such an obvious thing to try, I did and a few times. It would always make me feel drowsy during the day even at low doses, and, very bizarrely, I had the weirdest, scariest nightmares on it. Even more bizarrely, I’ve heard I’m not the only one in the blind community who had this experience, even though I also know a bunch of blind people who take it with no problem and it really makes a change for them.

I’d say the way my circadian rhythm works right now is that, most of the time I have a bit of a compromise with my brain, where both of us are having our requirements that need to be met but also try to be flexible as much as possible in regards to one another. I guess people with classic non-24 can’t afford that on a regular basis as their brain are less inclined to make a compromise.

I sometimes say that my brain is in something like a constant mild jet lag, travelling between different time zones. The times when I’m asleep or awake, or at least sleepy and alert, shift in a bit of a cycle. I still haven’t fully figured out how exactly it works, what kind of rules are there at play or maybe how many hours it typically shifts per what amount of time, because time involves too much math for me. And there must be many factors at play which can influence the way this cycle evolves, but there definitely is some sort of a pattern, even if it’s a subtle or a complex one perhaps. I’ve had my iPhone for over half a year now and I’ve been logging my sleep since then, but that hasn’t really given me much more of an idea so far either.

I’d say that one specific trend in my circadian rhythm will usually remain more or less of a thing for about a week, but it also depends on my lifestyle and loads of other things. So my brain may think one week that it’s really cool to wake up at 7:30 AM and go to sleep by 12 AM, which is okay with me too and this is always the sleep schedule I’m trying to aim for, because even if it doesn’t work out, I think it’s better when you have some sort of a reference of when you should/want to sleep and be awake. And then, gradually, I may be waking up later and later and falling asleep later and later, until at some point I won’t be feeling sleepy at night at all and will end up having a zombie day, which is, as you probably know already, what I call a day after a sleepless night. I typically have one zombie day a month, more if I’m stressed or something weird is going on. Zombie days are obviously quite horrid, I don’t think I have to convince anyone as I guess most people have enough first-hand experience of that, but I’m quite used to that and they seriously can have their upsides sometimes. The biggest upside to a zombie day, however, is that it resets my brain clock. It hardly ever happens that I’d have more than one zombie day in a row unless I’m having a lot of anxiety or something else is seriously off. Usually, after a zombie day, I’ll have a fabulous night of restful sleep and, if I go to sleep early enough – that is I think something between 7-9 PM –
chances are high that I’ll wake up feeling very refreshed in the morning and wake up at a decent time similar to when most human beings in my time zone wake up. That doesn’t necessarily mean I’ll be able to fall asleep just as smoothly and decently, but a reset has happened, so I have a chance to try and do everything I can to continue a normal or near-normal sleep-wake cycle for as long as possible.

It doesn’t have to always look this way though, because I can just as well wake up early and go to sleep early, or wake up late and go to sleep early, any combination is possible. What particularly seems to disagree in my case with what I know about non-24 is that for me the amount of time I spend awake or asleep also shifts over time, whereas, at least from what I know, for non-24 folks it’s only the times. It can also change whether the amount of sleep I’m getting feels enough for me, for example I may be sleeping like four hours and wake up refreshed and bursting with creativity, or another time I may be sleeping just as much and feel like I could use some sleep. That’s also been the case lately, since about last Thursday, as I keep finding it difficult to fall asleep at night and usually do about 1 AM, and then wake up about 4-6 AM and would love to sleep more but it just doesn’t work. I still prefer that than over-sleeping which usually makes me feel awful even when it’s actually what I need and is refreshing.

So because of all that, as you can see, I can’t really say whether I am an early riser or not, it really depends. Like I said though, I do try to stick to some kind of sleep-wake routine, by having an alarm set to 7:30 every day and falling asleep by midnight. I do think 7:30 is pretty early. That does help with having a bit of a reference for my brain to what’s relatively normal, or getting back on track faster when things get messed up. I don’t know if that makes me more of an early riser, because even though that’s what I aim for and I manage to succeed sometimes more often and sometimes less, I don’t push myself for all means to get up at 7:30. If I wake up at that time and my brain says “No way, I want to sleep at least three hours more!” that’s what we’re doing, as long as there is nothing I have to do urgently in the morning and nowhere to go. Same about going to sleep. If it’s 11 Pm and my brain clearly doesn’t want to go to sleep, I’m not going to force it unless I really have to do something important the next day in the morning, but even so, I probably won’t be able to fall asleep anyway and will only get stressed about it more when lying in bed than if I were doing something more productive instead until I’ll feel sleepy. And feeling stressed makes me only less likely to fall asleep. I also won’t typically lay in bed if I wake up at 3 AM until my alarm goes off, unless I truly feel I may fall asleep again soon. If I don’t fall back asleep in about 15 minutes, and don’t feel any more sleepy than I did when I woke up, I’ll usually get up, unless I really have no idea what I could be doing this early and don’t feel like getting up. Usually I regret it though, because if I stay awake in bed for too long after having slept earlier, at some point I’ll often start feeling groggy and then drift off straight into sleep paralysis. It’s not the case every single time though, which is why I sometimes fall into this trap, thinking that maybe this time it won’t happen and not wanting to get up at such an insanely early hour, and then it starts happening so quickly that I can rarely pull out of it. Sleep paralysis is one sleep-related thing that I do find very difficult to live with.

I normally try to restrain my brain from sleeping after noon as that hardly ends well and is rarely actually properly restorative, but sometimes is very difficult if not impossible to resist if I had a bad night’s sleep. And like I said I really hate naps and avoid them at all costs. Sometimes when my sleep cycle is really messed up and it bugs me, and I can afford having a super low key, lazy day of doing nothing and possibly being a mental mess, I’ll go as far as to force a zombie day to reset my brain clock. I’ll get as much sleep as possible one night and day, and then won’t go to bed at all the next night. Sometimes that works, but sometimes I have to give up and go to bed early in the morning and sleep through most of the day, other times I just have to have a nap and then end up right where I started off. These days, ever since I’ve started having more frequent migraines, I don’t really do that because it’s a sure thing to give me a migraine, and migraines always make me sleep more so it just no longer works and is generally rather unpleasant and radical.

Other than that, my anti-anxiety medication also works for sleep and it really helps me immensely in crisis situations, but I try to only take it when I absolutely have to, plus I often only know that I’m going to have trouble sleeping when it’s already night, and no point taking anything for sleep at night as that will surely make me properly hungover tomorrow and I hate the feeling with a passion.

And of course I also have a lot of other ways of dealing with all the sleep stuff, which a lot of people typically use when they struggle with it. I have my sleep habits like how many pillows I sleep with, the fact that I listen to music quietly while sleeping or read before falling asleep, etc. and cultivating such habits helps me fall asleep and create a sort of sleepy atmosphere. I love to listen to Misha purring before sleep, even though he never purrs loud. I like having a hot bath before sleep when I can, or a mug of cocoa or something else that would make me feel cosy in a sleepy way. Or I like to imagine something calm and friendly before going to sleep. That doesn’t always work, because I’m a professional ruminator, but when I can focus on all things Bibiel-friendly, the results are often very good.

Okay, now over to you. πŸ™‚

Question of the day.

How clean is your house/appartment right now?

My answer:

Well, it’s right after Easter, or, actually, here it’s still the second day of it, and most people do a huge cleaning before Easter. My Mum didn’t really, but that’s because she is a full-time house manager, as she puts it, and also she can be very pedantic, so there was no need for a real big cleaning here. Still, she did clean it more than usual out of a strong sense of duty, so you can imagine it’s extremely clean now. My room is more messy than most other parts of the house. Not like dirty messy, but just kind of disorganised to an outside observer I guess, which is its normal state that I like and am okay with ’cause it’s more interesting, and I’m not a perfectionist. If it’ll start to bother me, I’ll clean it up, but no sooner than that, usually. I guess only Olek’s room can compete with mine, and he’ll win, most of the time. Sofi, on the contrary, despite what you could think based on her very impulsive and spontaneous personality, is almost as pedantic as Mum. People often are surprised when I tell them that I’m quite messy and like it this way, because I have a lot more important things on my mind than being orderly, as there’s a – very true – conviction, that mess and chaos can be very confusing when you’re blind. Sure, only the key part is about who is the one making the mess. As I always say, I’d rather live in my own chaos than someone else’s order. One of the easiest ways to make me mad is to tidy my room without telling me about it, so that it looks like some Bibiel museum and I feel as if I were actually long dead, everything is in what YOU consider its place and looks very neat, and then I come in here and need something specific from here right this very minute but have no clue where you decided to put it so that the room would look as aesthetically pleasing to you as possible. πŸ˜€

How about you? πŸ™‚

Question of the day.

If you wake up at 3 AM and can’t fall back asleep, what do you do?

My answer:

As someone with quite erratic sleep-wake cycle which shifts a lot, mostly due to the fact that I have no light perception, I end up in such a situation quite often. Unlike a lot of people who struggle with sleep problems and disorders though, it’s not a huge source of frustration for me. Largely because it’s always been like this, and now I’m in a very comfortable life situation where I am in charge of my own time so everything is very flexible, I can sleep in if I need to, I can go to sleep very early if I was up all night, or I can have a more low-key day if I’m a zombie running on no sleep. Having lived in an exactly opposite way most of my life, where I did have to live a very structured life and having to fit in my constantly more or less “jet-lagged” into it, I appreciate this luxury all the more. So it’s not a big deal for me usually if I can’t sleep at 3 AM or wake up at that time.

I do lots of different things if I can’t sleep at night, I just take it as an extra amount of time that I can do something interesting with. Sometimes, when I’m in a phase when I don’t need a lot of sleep and can go on four hours or so and feel quite rested for a few days, I’m feeling quite energised at night and put my energy into something creative. Generally, regardless of my energy levels, I feel that I’m often a lot more creative and deep-thinking at night and come up with a lot of interesting ideas. πŸ˜€ So I’ll do some journaling, sometimes write a short story or try to write something more in my huge, neverending Jack Hamilton novel which I’ve been writing since like fourth grade and Jack Hamilton has been a great friend of mine and especially on sleepless nights, my Mum says that he’s like an old dog who’s barely alive but you’re too attached to him to put him down. I rarely add something more to that these days because I don’t need Jack as much as I used to as a teenager and we both have changed a lot, but I do not want to put a clear end to this whole thing, so these days if I write something more to it it’s usually just a little bit. He’s going to be celebrating his 100th birthday quite soon, I believe. Other times, I’ll just listen to some music and daydream (wait, nightdream) or go into my Brainworld, as I’ve always been an avid paracosmist (I’ve been a paracosmist my entire life and only recently learned about the existence of this word πŸ˜€ ).

If I’m less creatively inclined, I’ll just read or listen to music, often without even getting out of bed, although if I can’t fall back asleep for longer than an hour I usually get up because if I fall back asleep after such longer but still not very long time, I have almost guaranteed sleep paralysis and while people have varying attitudes towards it, for me it’s always been extremely scary because it features stuff I’m scared of in real life and sometimes one relatively short episode of sleep paralysis can affect me for a few days and make me super anxious.

Since we’ve got Misha, I’m often not the only one who isn’t asleep at 3 AM in this house. Misha’s sleep cycle is also totally different than the cycles of the peeps in here, so he’ll also often have loads of energy in the middle of the night, running wildly around the living room or playing with his glass balls. If that is the case, I’ll often bring him up to my room, as here his play won’t wake up anyone else, and we’ll play together.

Other times, I just go online and write with people or something, or play BitLife, ever since I’ve got my iPhone, because yes, I still play it quite a lot. Or just start my day properly, get dressed, eat something and do whatever I was going to do in the day anyway.

How about you? Does such a scenario often take place in your life? πŸ™‚

Question of the day.

What would twelve-year-old you never believe about you?

My answer:

Hmmm… I don’t think there’s anything all that unbelievable about my life. As a twelve-year-old, I had a lot of ideas and imaginings as for how it would look like, I had some potential plans but was never fully convinced that I’d actually want to do any of these things for real, was only considering that I might want to do so, for example to be a psychologist or a writer. Then on the other hand I’ve written here a few times about that weird dream or whatever it was that I once had when falling asleep about myself being an adult, standing in a huge kitchen full of children and not knowing what I’m supposed to do, either with myself or with them or anything really, which pictures how I generally felt about adulthood, as something I was scared of, didn’t really have a clue about or what I was going to do then, and it didn’t change by the time I was 12. I don’t think anything in my current life would surprise twelve-year-old me so much that I wouldn’t be able to believe it. Well, perhaps I could be surprised at the fact that I didn’t pass my finals, since people, especially my Mum, were always telling me that it wouldn’t be a problem for me to get to a university, and still, despite not doing that, I can live, and even have some sort of a job, even if it’s only thanks to my Dad. And my linguistic interests weren’t quite as clear yet when I was 12, I did know a bit of Swedish and I did enjoy English as a language, not as a school subject, but because at that time I was unable to continue my Swedish learning because of being at the boarding school and wasn’t able to resume it until leaving it, it was really difficult for me and if I wasn’t able to learn Swedish anymore, I preferred to forget about it as much as possible because thinking about it or even hearing it somewhere was really aggravating. So maybe twelve-year-old me would be surprised to know that I was eventually able to go back to my Swedish and can now use it, better or worse, and am also learning another language – Welsh – and planning to learn lots more. I guess it could be a little mind-blowing for me because, like I said, I didn’t have such aspirations back then at all. Oh yeah, and the fact that I blog in English, I think I’d be really surprised to know that, especially that at the age of 12 I didn’t blog yet at all and had very little idea about what a blog is, I only started blogging a year later.

You? πŸ™‚

Question of the day.

If you had to live at some point in the past, which time period would you choose and why? You’d be your current age and you’d have to go back to at least the late 90’s (or further back). You can choose any place.

My answer:

That’s really quite tricky. I think any time is interesting because of something, but I’d probably look for something beyond the 20th century about which we know quite well and, to me, it doesn’t have quite as much of the mystery factor. I feel like I’d like to go back to the middle ages most, however, it would be really difficult practically, ’cause back then I think it would be tricky being blind. Perhaps – even just because I’d be someone from the future – I’d be able to overcome the social difficulties involved in this (I could be some sort of a psychic or something), but there still would be all the logistics to deal with. I don’t think I would easily get used to, for example, depending on other people for getting virtually any kind of information that I can now get thanks to being able to read and having technology to help, of which blind people in the middle ages had neither. Ancient times could be interesting as well. As for place… I really don’t have much of a clue either. If I could go back in time, perhaps I could also be able to teleport, and go between all my favourite countries/areas and see what’s going on there? Practically though, I think it would be wisest to stay somewhere round here because I really don’t know how well I’d be able to understand people that far back in time anywhere else, I think I’d have some communication problems even here but I guess not as bad. πŸ˜€

How about you? πŸ™‚

Ten Things of Thankful.

How are you people doing? Thought I’d do a bit of a gratitude list, linking up with

Ten Things of Thankful – #TToT –

just because it’s Sunday. Not that Sundays are my favourite day of the week or anything – they never have – but just because I feel like it and because any time is good to be grateful.

  1. Β Β  That my new-ish migraine medication is kind of working. Some of you may recall that I was recently writing that I was free from migraines for quite an impressive amount of time – three weeks. – Well, and then I got a period, and the bliss appears to be over, because after my period went away, I already had two migraines. However, not long before that break, I was prescribed a new med by my GP, which would hopefully work better than the previous one and that I can also take in combination with the other one. I didn’t have an opportunity to test it though until this week. And it’s a bit curious because, while it by no means got rid of either of those two migraines, it did help enough that I could function somehow, and not just sleep or try to sleep my life away. The one I’ve been taking so far would either get rid of the migraine entirely sometimes, or other times not change the situation at all, it seemed to be very random. Still, we’ll see how it goes in the coming weeks, I guess. But so far, I’m grateful that, this week, it worked at least somehow, and that I’m not having a migraine today.
  2. Β Β  My faza developing beautifully and my currentΒ faza subject. My faza peak has gone down somewhat, but it’s normal, and so far it’s still a peak and doing quite well as such, and even without a peak, having a major faza is always such a fabulous thing! I wish I knew more about him than I do but oh well, maybe I still will over time… In this respect, this is probably the most difficult faza I’ve had, but at least I’m developing my deductive skills, or something… Oh yeah and I’d like to squeeze in all my pleasant and positive synaesthetic experiences in here, which I’m also very grateful for.
  3. Β Β  And, speaking of the faza and brain stuff, my Welsh language development. Lately it’s been feeling quite speedy. Well, maybe not as miraculously, spectacularly speedy as it was with my Swedish or English, but still. Recently I had my first dream where parts of it were in Welsh, and I’d been waiting for this for such a long time, because, you know, when you’re starting to dream in a language you’re learning, it shows that your brain is really processing it intensely and you’re actually absorbing it, and on the other hand that it’s already ingrained enough that it can even come out of your subconscious. And it’s just fun to be able to dream in yet another language. I was really waiting for it a long time because it was slowly starting to get boring to only dream in Polish, English and Swedish, as much as I’m crazy for these languages, I need more diversity. It probably needs time until Welsh will appear in my dreams regularly, and in that dream there were only like snippets of it, but it’s a great start, isn’t it? As you may know, I needed to limit my Welsh learning quite a lot last year because I had a lot of tech transitions and familiarising myself with new technology to do, so I only restarted my intensive learning this year. And I just love that feeling that I always get on Mondays after learning (Mondays are my most intensive days when I introduce new material, which can take up to 3 hours and then I work on it for the rest of the week about half an hour daily), when all my brain muscles are pleasantly sore and steaming and twitching in a total mix of languages. During this past year I kind of forgot how very satisfying and addictive this feeling can be. No space left for overthinking or anything like that. It can be quite difficult sometimes when I’m particularly depressed to get myself going, but once I do, it actually will often help me to feel better. Plus this year so far has been really pretty decent moodwise to begin with for me, as you may already know. And now with a brand new faza in the mix I have twice as much motivation, inspiration and various opportunities to further develop my language skills and they kind of do it on their own.
  4. Β Β  Podpiwek. Podpiwek is a Polish fermented soft drink made of grain coffee, hops, yeast, water and sugar, which contains a tiny little bit of alcohol, it’s served cold and in my opinion it’s better than any shop-bought fizzy drinks I’ve had. My Mum had always made it for Christmas/New Year’s, because that’s how it was at her home for some unspecified reason, but last year we had too much of everything else so she didn’t make it for Christmas which I was happy with because I was kind of sick on Christmas anyway so wouldn’t be able to enjoy it. Instead, she made it earlier this year, and since then, we’ve somehow really got hooked on it suddenly, as if we never had it before. So we came to a conclusion, why the flip only make it once a year, when you can have it all year round? Good thing that Sofi doesn’t like it, because when Sofi likes something, she absorbs it all at once, and this way there is more for the rest of us. πŸ˜€ It is very healthy, it has a lot of B vitamins and I don’t remember what else but my Mum listed a whole lot of things. It’s very refreshing. Initially, my Mum made her own, but then she made it again and it somehow didn’t turn out quite as good, at least in her opinion, so she kept experimenting until finally she decided to get the ready-made mix, got lots of it and lots of bottles, and now we have so much of it that I was at first wondering whether we’d manage to drink it all in two weeks as it’s best to do, and was worried that such a yumy thing will be wasted, but now I think there will be nothing left a lot sooner than that. It’ll probably be a fixed element of our diet now like kefir is for Mum, Sofi and me, and we may end up cutting back on shop-bought juices or soft drinks.
  5. A great book series I’m reading right now. Ages ago, one of my penn pals who is also very much into Welsh language and Wales, and especially north Wales, mentioned to me his favourite book – The Brothers of Gwynedd Quartet by Edith Pargeter. – This is a historical series about prince Llywelyn/Llewelyn ap Gruffudd otherwise known as Llywelyn the Last. It sounded to me like something I’d absolutely love to read, generally I’d love to read any realistic historical book set in north Wales because I had no luck with them and when I came across something, it was annoyingly unrealistic so that even someone like me – not a history buff – could spot it. But at the time when we were first talking about it my main source of books in English was Audible, and this book wasn’t on Audible, neither was it translated to Polish, not surprisingly to me at all. But this year he reminded me of it and told me that he was re-reading it, and what a pity it is that I can’t read it as well, so I thought I need to have a look in other places that I currently also use for getting English books from, and – yay! – I got it! And I’ve been reading it for a week now and enjoying it a lot.
  6. Β Β  Misha as always. Misha hasn’t been spending much time with me this week – or else I’d put him higher on this list – but whenever he does, it’s such a pleasure and I’m always grateful for it whenever it happens.
  7. Feeling quite well mentally and emotionally lately. I’m trying to get as much out of it as I can while it’s lasting.
  8. Jocky. I don’t have such a bond with Jocky as I do with Misha, he has this bond with Sofi and they fit each other so well, but I do love him and he’s a cute little fluffy ball and so playful and infecting with enthusiasm. But the reason why I put Jocky on this list is that he had an accident this week. He got hit by a car, and his tail was hurting a lot afterwards. It was so pitiful too see him hurting so much. Thankfully, when Mum and Sofi got him to the vet and he had X-rays, they were okay and he doesn’t have anything broken. But he still needs to take painkillers and it sure must have been hurting a lot at the beginning because even when Sofi would hold him gently and sit still, he would suddenly start to whimper. But now he’s more like his normal self and I’m so grateful for it because something like this could have easily ended up a lot worse.
  9. My Mum. Like with Misha, I’m always grateful for my Mum, because she always does a lot for me and also she is just great as a person and a lot of fun to chat with.
  10. Sleep. Mine has been really irregular for the last few days and last night for example I didn’t really sleep the best, but sleep is a great thing in general and I love to sleep, thus I’m grateful for it whenever I can get it, even if it’s not much.

Now you, what are you grateful for? πŸ™‚