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. ๐Ÿ˜€

How about you? ๐Ÿ™‚

My favourite place.

Today, I decided to do a post based on a writing prompt that I got from the PaperBlanks app which is the following:

“One place I always feel happy is…”

I don’t know if happy as such (I’ve generally got a bit of a dilemma with the word happy), but there is definitely a place which cann often make me feel happier, because it is a place where I feel safe and where I know I can be myself and do whatever I feel like doing, and which my brain associates with happy things generally. This place is my room. It’s a place where I always recharge after peopling, where I go to when I want to be alone, where i do most things in fact that are important to me, from writing to learning to working to sleeping to daydreaming. I have a real connection with it and lots of good memories, even though I’ve only been living for four years in here.

I have no pics to accompany this post, but I thought I’d describe my room a little for you, so that you could have a bit of an idea.

Both me and my siblings live upstairs. When you go up here, the first door to the left is the bathroom, and then, next to it, there’s my room. One thing that I don’t like about it is that the walls here are rather thin so that I always hear people in the bathroom, which is particularly annoying when someone is showering as there is a whole lot of noise.

It has a green, flowery wallpaper and is quite girly in terms of the design I’d say. I have a double bed – which used to be Sofi’s because Sofi is taller than me and it was clear years ago that she was going to end up taller than me so Mum wanted to get her a bed that would serve her for years, but I don’t even remember now why it ended up in my room, anyway we switched beds with Sofi and I love double beds so I’m happy with that. – Sofi now doesn’t sleep on the sofa that she got from my room anyway, because she has like two rooms, one inside of the other, and recently she has arranged her bedroom in the smaller one, on the matress, it feels more atmospheric for her and she actually has a more comfy bedroom now. Anyway, I’ve got the double bed, which means I have the space for Misha’s bed on top of it as well, and all my many pillows and other things, and can toss and turn as much as I wish, which I tend to do a lot. Misha’s bed is in the far right corner of my bed – it is a basket –

Right next to Misha’s basket, there is my bedside cabinet. There is also my power strip that is fixed to it, which is more practical because this way the cables don’t get tangled too easily and I can use my devices more freely when I’m in bed which I do a lot. My bedside cabinet has three drawers, where I have some of my clothes and things like PJ’s, meds, cosmetics, important documents that I use regularly, Misha’s treats etc. etc. it’s real messy in there. On the cabinet, there is another, more fancy cabinet where some of my gem stones reside, as well as my gem stone figurines, and some other knick-knacks that I have and that just look representative in there because this cabinet has a glass so people can see what’s in there and often get very hyper about my stones if they see them for the first time. Others are in a sort of cassette that my grandad made for me for this purpose, or in boxes. On the sides of this cabinet there are little shelves and I often also put some things there, but what is there pretty much permanently are some saintly statues that I have, a little picture of Our Lady of Ostra Brama, a statue of st. Hyacinth, and of st. Michael Archangel, and I have my rosary on there as well, while on the other shelf there are cards that I got from people over the last couple of years. As for religious stuff there is also a picture of The Last Super on the wall above my bed that I got for my First Communion. Up on the gem stone cabinet hangs my Bluetooth speaker, which I now always use at night to play some music or radio from my iPhone, which is so much better than listening on the computer which I used to be doing for years and it was okay, but my current computer is quite loud, and it’s not particularly pleasant at night really to sleep in so much hum, it feels like in some sort of a laboratory or something. ๐Ÿ˜€ On the bedside cabinet I’ll typically also have my water bottle there, right now there are hyacinths that I got for my birthday and a mug and a pot of tea.

Right next to the bedside cabinet there is my desk with an office chair. On and under the desk there is the computer (I have a desktop one, Braille-Sense, and a salt lamp, just to make it look nice, I think salt lamps are really cool. There is also a hand-made box that I got from Sofi where I keep some things that I need to have in close proximity but don’t want them necessarily to cluter the desk space. There’s also my Bluetooth keyboard for the iPhone although I use the Braille-Sense to navigate the iPhone screen far more often, and my Bluetooth headphones are there as well. There are also drawers where I keep all sorts of work documentation of my Dad’s or other papers, tons of Braille paper sheets which I don’t really use because I don’t use a Brailler all that much anymore for anything but Braille paper is expensive so it would be a shame to throw it away especially that it does come in handy sometimes when I still do need to write something, or sometimes Sofi uses it for something when she needs a thicker paper, some stationery supplies and ready-made Christmas cards that I got from my Mum when I started sending out cards to people but before I came up with MIMRA, I usually use these when I send cards or something to people outside of MIMRA, loads of cables, pen drives, SD cards, and currently also a lot of candy that I got for my birthday.

To the left of the desk, there is a window. I have both curtains and external blinds, which can be quite helpful in the summer, because my window is west-facing and my room heats up super quickly even when it isn’t hot but just very sunny outside, and it also helps when it’s very windy. On the windowsill is Misha’s observation point, you can see a lot of interesting things from here. When he gets weary of the outside world, he can go to sleep in a little basket that is standing there.

A brand new addition to my room is a big armchair which is standing between the window and the cupboards, which my Mum got somewhere last week because she liked how it looked, but didn’t really know where to put it, and eventually decided it would fit my room best. Previously I used to have a very old armchair that used to belong to my grandma decades ago. It was mostly used by people like my Swedish or English or math tutor when they used to come here, or anyone who would be visiting. Because I no longer have tutors or anything like that, and don’t have much of a need for using the armchair myself, I’m perfectly happy sitting on my bed or on the desk chair, its purpose will probably be mostly decorative, as it apparently looks really well, and my Mum likes to sit in here when she comes to my room to vent about life, which she does regularly. ๐Ÿ˜€

Then I have cupboards where there are all the other of my gem stones, another energy strip which is fixed on the inside, which I use for charging devices that I either don’t need to charge very regularly or don’t use all the time. There is also my OCR scanner, different documents of mine, some only archival like from schools, some that are actually useful sometimes. Up on the cupboards are my books in standard print, the ones that were able to fit in my room. I don’t really have a good place for storing books in here, and there isn’t really a good place for a proper bookshelf apparently either, so most of my books are on Sofi’s bookshelves. The books that I have in standard print are mostly either Swedish children’s books that I got in Stockholm at Junibacken, or books about names, and some books with fairytales and myths from all around the world – – and my Polish-Swedish and Swedish-Polish dictionary, and some other Swedish and even Norwegian books that my Mum got in a second-hand clothing shop (yes, you read that right, that’s where my Swedish tutor found that you can find ridiculously cheap Scandinavian books and my Mum had a look and found loads of them that no one was interested in, only she never could figure out which were Swedish and which Norwegian so I’ve got a lot of both, and I’ve never read the Norwegian ones or even scanned them in full, even though I think if I set my mind to it, I could, it just sounds like a lot of hassle, and I’m not motivated enough).

To the left, there is a wardrobe where there are all my clothes, and on top of it are some cartboard boxes where Misha likes to go to sleep, particularly when he’s somehow overwhelmed and doesn’t want anyone to see him. There is also myy old Brailler up there.

What is a place that you feel happy, or just safe in, and that you like? ๐Ÿ™‚

People of the blogosphere, come rejoice with me, and let me introduce my brand new, long awaited faza subject…!! ๐Ÿ˜Š ๐Ÿ˜‚ ๐ŸŽ‰ ๐Ÿง 

Finally, it happened! I still find it a bit difficult to actually believe in, but I am now sure that it’s for real. My new faza has actually started some time ago already – on 13th January – but I felt like I needed some time to process things and to feel really sure that it’s a proper, long-term faza to be able to write about it publicly, I wouldn’t even tell people in private, except for Sofi, who it was because I always feel a bit, hm, insecure kind of, at the start of a new faza, and also I wasn’t sure if it was for real, I didn’t want to regret sharing something with someone too early on.

But, before I’ll write anything more, I want to tell you that if you’re a newbie here and have totally no idea what I’m talking about when I say “faza”, or maybe you’re even a regular but still find the concept a little confusing (because it certainly can be a bit confusing), I’ve got a

new page here,

which I hope will make things clearer for you. Please let me know if you’d like to know something and it’s not clear on there, because it’s difficult to explain stuff that is going on your brain level to outside people. If you’re not really familiar with what I mean by fazas and you want to be , I suggest you read that page before this post as otherwise it might be hard to make sense of what I’ll write here and I don’t want to clutter the post with explaining things on the go, as it’ll probably be a long post anyway. On that page you’ll also learn who it is I’m going to be talking about…

So yeah, I’m in the midst of a fabulous faza peak, which means I’ve been having quite a good time lately. What this new faza has certainly already taught me is: you can’t just make such things happen at will, just because you want. If you have been following me all that time ever since my faza on Gwil has started to fade and it didn’t seem like anyone was on the horizon to replace him on the dominant spot, perhaps you know a bit about my frantic search for a potential faza subject, especially in the music world as that’s where I most often get my fazas from. I tried to narrow down my criteria and especially looked for all sorts of musicians named Jack in whom, or in whose music alone at the very least, I could become passionately interested. Not because it’s any kind of requirement for my faza subject to be called Jack, or anything specific, for that matter, but, just like I said, it was just some sort of a criterion I used to narrow down what I was searching for, and I really love the name Jack so I thought it would be cool to finally have a faza subject named Jack. Later on I also started looking for people called Hamish because quite recently, being a name nerd who often falls in and out of love with different names, I’ve become enamoured with this name, according to my Mum it’s because it almost sounds like “Hey, Mish”, which is possible but in my opinion it’s mostly just because it’s so Scottish and both strong and kind of cute at the same time.

Despite my huge efforts, it just failed massively. Well, I did find a lot of great music so that was a plus, but none of these people were seriously interesting for me enough as individuals, nor did I feel their music enough to be able to consider them as my faza candidates for long. In fact most of them always turned out to be more Sofi’s thing, which means they just absolutely couldn’t be my thing because our tastes in most things vary a whole lot and thus it was just almost physically impossible. ๐Ÿ˜€

On January 13, I decided to finally do as mundane a thing as cleaning of all my gem stones and their appartments (which I normally make sure to do regularly and generally like doing but now somehow hadn’t done in quite some time and totally didn’t feel motivated as it really takes some time because different stones often need different kind of handling, and I’ve got lots of semi-precious and precious stones). So on January 13 I just got down to doing it. I put some music on just to play in the background , and even Misha came to entertain me with his company.

I think I was listening to one of Spotify’s Daily Mixes (if you’re not familiar with Spotify, Daily Mixes are mixes of music that it makes for you based on your listening activity, with stuff you’ve liked and things you might like but might also not have heard, there’s up to six of them depending on howย  varied your music taste is). I wasn’t really paying much attention to it, being deeply engrossed in my own thoughts, but just as I was polishing my lovely Fulk the Pyrite, I suddenly did start paying attention to the music because there was a rock piece I’ve never ever heard before and someone was “singing about [Welsh] independence” in a way that first made my heart wrench because of the hopeless lyrics, and then all of my brains melt with delight because it was so good overall and my synaesthetic experiences were bliss when listening to it. I had a quick look to see what that song was and by whom and that’s how I’ve first heard about a band called Y Trลตbz. It’s interesting how even small, minority language music scenes have just so much going on that even if you’re as familiar as I am/feel I am with the Welsh-language music scene, there always seems to be something you won’t know about, even if it’s not exactly very new.

Much later on that same day, just out of plain old curiosity, I looked Y Trลตbz up. What was my surprise to learn that one of the people in this band is Jacob Elwy – the same

Jacob Elwy

whose song (together with Mared Williams) I shared just two days prior to that, saying that I didn’t really know much at all about him. How fabulously ironic! ๐Ÿ˜€ In hintsight, I botched that post properly, because I even wrote that Mared Williams was from Gwynedd even though I knew full well that she was from Conwy, I don’t know what happened to my brain, but now it’s edited so hopefully my crime is forgiven and forgotten. While I’ve always found that song of Jacob and Mared that I posted really nice, it hadn’t exactly made me feel anything special which could suggest any forthcoming fazas, and I’ve listened to it many times, it was just that – very nice and pleasant. –

That in turn sparked my interest with Jacob himself, and, while I couldn’t find a whole lot about him, I thought I’d see if he’s doing anything solo. It appears like he’s just started spreading his wings in this respect last year, starting with the 2020 edition of Cรขn i Gymru (so the second one in a row in which he took part), where he sang a song called “Pan Fyddai’n 80 Oed” (When I’ll Be 80), which I could vaguely recall and I knew I loved it to bits but I didn’t know who did it or how it was called or anything, I just heard it once on Radio Cymru while laying in bed half asleep with a migraine or something and thinking that it was really cool and reminded me of something very pleasant.

So I had a listen to his solo pieces as well and with time that priceless feeling I always get when having a new faza was getting stronger and stronger. I only had some doubts because I still knew precious little about him as an individual, and this is so key with fazas, but he has both rock and folk leanings, and also seems very much into reggae (which is cool because I used to be madly into reggae before I discovered folk so I have a bit of a sentiment for it) so at least musically I believe I feel him, although, a little surprisingly for me, even though I am a bit more into folk than rock, in his case I somehow prefer his more rocky side so far.

At the same time, as I was listening to him, somewhere in a corner of my mind I could feel that his music reminded me of something very vaguely but persistently. Something I couldn’t identify. And then I had a realisation! His voice, particularly in the lower register, reminds me of Jacek from Helsinki – my Polish Finnophile friend whom I’ve written a bit about on here who passed away from cancer a couple years ago. – Jacek was a rather musical creature who liked to sing sometimes, but most of all play the cello, which instrument I will probably associate with him forever and ever so it always makes me a little nostalgic. I really needed some validation of my experience so I even reached out to our mutual Polonophile Swedish friend although we’ve barely been in touch since his passing and I showed her the song of Jacob which he sang at last year’s Cรขn i Gymru, where he sounds the most like Jacek in my opinion and asked her if she feels the same. She said she wouldn’t be surprised if Jacob could also play the cello. Honestly, I would be very surprised, because while they sound very similar sometimes, I don’t suppose they are very similar in other ways and I just can’t imagine Jacob playing cello! ๐Ÿ˜€ But, if he does, that would be a cool surprise.

But I didn’t want this faza to be just based on the fact that Jacob reminds me of Jacek, that would be just so bloody unfair, especially that by then I’ve already started to like him overall, not just because of some sort of similarity to Jacek! So, to avoid that, I am starting to get to know him the best I can without actually knowing much about him directly – because it’s not like he’s very popular outside of Wales or perhaps north England so naturally I won’t be able to find a lot of information about him like I could with one of my previous faza subjects, Cornelis Vreeswijk, for example. I am also limited by the fact that I can’t see (and when you can see you can figure out a lot of things about a person easier, obviously), and that I’m not on most social media, but oh well, we can deal with that. With my own online research I actually learned more about his family rather than himself, which was also interesting.

Jacob is from a village called Tan y Fron near Llansannan in Denbigh in the Vale of Clwyd, however currently I believe he’s studying music in Manchester or was doing so not very long ago. If I’m guessing right (I may be guessing totally wrong because I’m shitty with counting as you know and I only guessed it based on other things I knew) he’s probably 26-27 and he has a lot of siblings for these days’ standards which I think is so fun and they all sound very cool! Sadly what also seems to be the case is that his family has been through a lot of hardships, I personally think more than what would be considered a fair share, which is perhaps just the reason why they make an impression of being very close with each other. I’m not sure I can talk about this because I didn’t really find most of it as something in relation to his music career, the only thing that does somehow connect to his music out of these is that his father had an alcohol problem, and died quite early on, when, I believe, some of his siblings were still teenagers. He left behind a book of penillions – which are, if I understand that correctly, poems which are sung to music – and they discovered them later and Y Trwbz made a few of them into great songs, they also wrote a song about him.

I always ask Sofi to tell me what my faza subjects look like and what she thinks about them subjectively (she summed her description of him up saying that she thinks he looks like Justin Timberlake ๐Ÿ˜€ ), and Sofi’s usually the first to know about my new fazas. And she made me notice a thing I didn’t even realise before. I told her that I’ve got a faza on a guy called Jacob Elwy and she was like “Oh wow, so your dream has come true! You’ve got your Jac- someone”. I was dumbstruck for a moment. Yes, I am a Jackophile, so I was looking for a Jack, or a Jac, or a Jacqueline, or a Jacek, or a Hyacinth (because it’s etymologically related to the Polish Jacek as you may recall from

this post)

but despite the name Jacob obviously starts with Jac-, and even despite Jack Vreeswijk’s full name is Lars Jacob, it never fell under the same category for me because it neither sounds like Jack, nor shares the etymology with either Jacek or Jack. And then I realised one more thing. Namely that, after all,

Hamish is a, somewhat distant, but still, etymological cousin of Jacob.

And then poor Sofi got quite confused, because I just couldn’t help myself and started laughing my brains out. It was as if God – or perhaps my Guardian Angel or one of my purgatory soul friends, because God probably has more urgent stuff to deal with, especially right now in these hectic times, than my fazas – was smiling at me mischievously and saying: “Hey you, Bibielle, you wanted a Jack or a Hamish, why not all in one, eh?”” I was always rather neutral about the name Jacob, given that it’s so popular for children in the US and I’ve got a lot to do with baby names every day so it seems a tad bit overused to me, and here Jakub has been nauseatingly popular for baby boys for decades, but I’m gradually changing my view on it now, obviously. Edited to add: a few days after writing this post I learned that, in case of this Jacob, his name is pronounced like Jack, as opposed to like Jay, which makes the situation even more hilarious and also really cool because I actually like this pronunciation a lot more, and don’t know why I couldn’t figure it out on my ownn that this must be the way it is pronounced in his case, since with Welsh phonetics it makes all the sense in the world.

I also had my doubts about whether it will really be so cool to have yet another Welsh faza in a row after Gwilym, but now I think it’s the perfect situation. Because I’m nowhere near fluent with my Welsh yet, and if I got a faza subject who would speak another of my favourite languages, I’d get distracted. Last year was very fruitless for me Welsh-wise because it was such a techy year, with my eventful computer transition and then the iPhone and getting used to the touchscreen reality which for me took a lot of time even though it went much better than expected. This year, even before I got the faza, I’ve decided to catch up on this and that’s what I’m doing. It’s good to be back on track again.

Because I believe that when getting to know a person, it’s good to know their background and things like that, I made my Dad feel appreciated by asking him to have a look at what Jacob’s area looks like. My Dad loves Google travelling (he’s often like: “When I was in Mexico a few days ago…” and sometimes people get confused but he only was there on Google Maps ๐Ÿ˜€ ), and so I always give him that mission with my new fazas, to go on Google Maps and have a look around where they live or grew up or something and tell me what he thinks, like generally about the place, what it looks like, what there is, whatever. I don’t talk with my Dad about my fazas, he doesn’t know about it, he’s just used to me having weird whims like that sometimes and wanting to travel virtually to some often a little obscure corners of the world, but he seems to enjoy these Google rides a lot and they are very useful for me to form a bit of an idea. He also helped me a bit with my geography, because while I’ve got quite a good idea of north-western Wales, with north-central/north-east I didn’t really know where exactly all these counties are and what distances between different places there are and couldn’t make sense of it on my own. Fazas, you see, can be very educating experiences.

I’ve also figured out (which I may be wrong about, it’s just my suspicion/gut feeling), that while it doesn’t seem like he has written any of his Welsh lyrics because most or all of them are by Rhydian Meilir with whom he collaborates a lot, nor I guess any of the lyrics for Y Trลตbz that he has sung with them, all his solo music in English (he has released only one English song officially but I’ve seen more unofficial songs of his) may have been written by him, and some of it has been written by him for sure. Which is a good news for me because people’s own lyrics usually can tell a fair bit about them. Perhaps not everyone is somehow super exhibitionist but still, it’s hard not to reveal yourself at all.

I’ve also looked at his Instagram even though I’m not on there myself and even though of course it’s not a very friendly place for blind people with so much pics, but still, I made use of all the image recognition stuff I have on my phone (Sofi was out, and I wouldn’t want to take an advantage of her too much) to get any idea of the pics, with mixed results, and luckily Instagram is not pics alone. So now I have a bit more of an idea of what he’s like, for example that he’s very keen on travelling as it seems, and has been to quite a few countries, I guess most recently Brazil before the pandemic has started. I’d read before that he went to Australia for a year, and, nosy as I am about my faza subjects and anything that may fascinate me (I should probably really work on this and become less nosy when it comes to people but oh well I’m an Aquarius and curiosity, which sometimes goes overboard, is the only Aquarius trait I seem to truly have so if I eradicated it out of myself I’d feel like a very fake Aquarius, this is my only excuse), I was wondering a lot about why, I mean whether it was something to do with the music or some other kind of career/education thing he was doing or just for fun, and now the latter seems most likely.

Okay, so, to finally close this lengthy post, I have a bonus song of the day for you. The one which originally caught my attention so much – “Annibyniaeth” (Independence) by Y Trลตbz.

Y Trลตbz is very much a family business, as originally it was created by Jacob as the vocalist and his younger brother Morgan as the bass, and then two other members – their cousin and Morgan’s friend – joined. Later on, Jacob was replaced by Mared Williams who is Morgan’s girlfriend, and then when Mared had other artistic things going on Jacob was with them again. Despite I’ve got a faza on Jacob, I like Y Trwbz with Mared just as much, it’s equally great but in a totally different way.

 

The lyrics are written by Morgan Elwy and I don’t feel like I can translate them for you literally because I don’t know the meaning of some words, but I do understand the point of it well and I can tell you that this song shows how one feels when their own country is not independent and basically facing a lot of unnecessary difficulties which surely wouldn’t happen otherwise, like the flooding of Capel Celyn, which was carefully planned ahead, about losing hope and not seeing the point in fighting for your rights when no one hears you anyway. So there’s a question, when will the day finally come that their country will be strong again, and the Welsh will be singing about independence. I dearly hope for it to happen as soon as it’s only possible, and wish them good luck with regaining their autonomy, just as I do with all of “my” other countries which also can’t enjoy independence.

What (if anything) do I wish more people knew about me?

I was thinking about writing some journaling prompt-inspired post on here for a while, and finally I’m getting to it, although it probably won’t be very long.

I chose to do a prompt from The Year of You by Hannah Braime which goes like this:

“what do you wish more people knew about you?”

Well, since just like I said I’ve been wanting to write this post for a while, I could also think it through very thoroughly. And my conclusion is, I’m not sure there is anything of particular importance that I wish more people would know about me. Because what would that knowledge change? What would they be to do with it? I guess, if anything, it would only make me feel more self-conscious.

Having more people know things about you could be useful only if, along with the knowledge, they would also gain some understanding. Then, my answer could perhaps have been a bit different. But that’s a really high expectation to want people to understand you as we so often don’t even understand ourselves, and can often be very complicated beings to understand for one another. While it would make a lot of things easier for me if people could just understand, it’s not something I actually expect them to do.

Thinking about it some more, however, made me come up with three things that I think would be nice if people knew about me.

The first one is that, while I am blind, it doesn’t mean that I am good at the same things, or can’t do the same things, or should be able to do the same things, or like/dislike the same things, or am somehow otherwise similar to some other blind person you happen to know. I don’t assume that you are the same as my Dad just because you both are sighted, so that you too surely must enjoy all things automotive like my Dad does because YOU TOO CAN SEE. ๐Ÿ˜€ Similarly you. Why would you think that, for example I need to be a great musician/have a guide dog/have an extremely good sense of smell/be able to live completely independently/not to have my own eyes/always be smiling etc. because that’s what the blind person you saw on the telly was like? Being someone with quite a strong sense of individuality, such assumptions drive me absolutely nuts, and they are even a bit of a thing in my extended, or not so very extended, family, as my gran for example has this kind of mentality. It is also, to a lesser degree, present even among people who work with blind people, which probably drives my Mum even higher up the wall than me lol. I’d like to get rid of that, and so that automatically all the other blind people could get rid of the problem in their lives too, and any other disabled communities where such a thing is a big nuisance.

The next thing is kind of related, and is not so much about me as me, but it would be really good for me too if people were able to know that, at least on some basic cognitive level. Namely, I’d like people to realise that not everything they see and consider obvious, is always actually the way they see it, because there may be a whole lot of stuff they don’t see, which doesn’t mean it doesn’t exist. And similarly, not everything that you think you see may necessarily be what actually is there, this is just your way of seeing things.

The third thing, in turn, is slightly and rather indirectly connected to the second thing. It’s not necessary for people to know about me, it won’t change anything either for me or for them, and I don’t think they’d also need to understand it but I guess it would be fun if people knew, just for the sake of knowing, maybe it would somehow enrich someone’s life or something, who knows. This thing is that I have a very rich and interesting brain life, even if it doesn’t necessarily seem like this, because, after all, how does it show on the outside that someone has a rich brain life? It used to be my coping skill, and still is, of course, but now that I’m generally doing better in life it is also simply a pleasant thing and just a way of escapism or recharging or entertainment and the like. Over the years, I’ve created a few imaginary worlds, some quite well-developed, some less. Also I have fazas as most of you regular people on here probably already know (if you don’t know, fazas are very very briefly and basically how I call my very intense fascinations on people, the Polish word faza means phase or stage), and I have synaesthesia which brings me a lot of sensual joys. So yeah, my brain can be a jerk but it can also be the best source of entertainment for me. And I think I’d like people to know that because I wish more people had Brainworlds, it’s just a lot of fun so why not share it.

And how about you? Is there anything at all you’d like more people to know about you? If so, what would it accomplish, in your view, or what do you hope it could accomplish? ๐Ÿ™‚

Question of the day (28th December).

What’s the hardest thing you’ve ever been through?

My answer:

I think the most difficult thing for me was the recovery after my Achilles tendons lengthening surgery, which I had when I was 10. Basically I spent six weeks with my entire legs in casts in order for them to heal properly, although my surgeon was a bit overzealous apparently, because from what I know now my casts were way bigger than it was necessary, which meant I could barely move my legs at all, and had to have them pretty much in the same position all that time and then later throughout physiotherapy until my muscles got used to working all over again. That was of course a fair bit of discomfort and then later also pain but that wasn’t really why I found it so difficult, rather, it was because I was totally unprepared mentally for what was going to happen to me after surgery, I had totally no idea what it was going to look like. My family weren’t really prepared either, we didn’t even have a wheelchair for me or anything like that so my Dad had to carry me to the loo when I needed it, and people had to help me out with the most basic stuff which I found incredibly humiliating. But what was challenging even more than that was the sensory deprivation. I didn’t have a computer back then nor any other devices really, and my room wasn’t adapted to my temporary condition. Sofi was very little, had about six months maybe, and my Mum was very busy with her plus with the new house my parents were building, people were going on with their lives and I was really bored most of the time. Sometimes my Mum would get me some talking books from the nearest library for the blind, which wasn’t really all that near, and I had a lot of Braille magazines for children, but they were on the shelves so someone had to give them to me. There was a limited number of them to begin with, but they also weren’t really labelled in any way in normal print, so I would often get the same magazines all over again. I also had a radio and listened to my favourite radio station at the time – Polish Radio BIS. – My class teacher visited me a couple of times to somehow help me catch up on the school work but that was only at the beginning. And other than that, I didn’t really have much to do at the time. My brain was in an awful mental state already prior to that due to a few different things, I was really anxious all the time, and that only worsened then. And because I was so sensorily and cognitively understimulated, my sensory anxiety was sky high all the time and that was simply really difficult to live with. I was also really depressed and suicidal and my sleep was all over the place, because of the lack of stimulation of any kind, anxiety and because my calves were hurting a lot for some reason after surgery, not somehow extremely bad but bad enough that it would prevent me from sleeping well. I still sometimes have that pain even these days, although it’s lesser. And of course the lack of sleep didn’t help in making me feel any better and my brain any more rational. And then physiotherapy was also quite yucky, as at the beginning it was rather painful and quite unexpectedly again. Most ironically though the surgery didn’t have any lasting effects, although because I’ve never really seen my shortened Achilles tendons as a real problem that would hinder me in any significant way in life I can’t say I care about that a lot.

What is such a thing for you? ๐Ÿ™‚

(Do) I have people I trust.

I thought I’d use some journal prompt for some longer writing today, and I found one in The Goddess Journaling Workbook by Beatrice Minerva Linden which got me thinking, so I chose it.

“I have people I trust. Who are they? If they haven’t appeared in your life yet, imagine that person from your future vividly. Imagine the feeling of talking to a true friend. Imagine what they look like, their gestures and how they look at you as you talk to them.

Rather than strictly following the prompt, my post will be more like raw (more or less) ramblings about the whole trust thing in my life, just based on this prompt.

Because I am disabled, and so can’t be as self-sufficient in all areas of life as are people who do not have the disability and difficulties that I do, and because I am not very autonomous in what I believe is neatly called independent living skills in the Anglophone disabled community, I’ve naturally had to learn to trust people in a strictly practical sense. I mean in everyday situations in which I may need another person’s assistance or help. And I have, although obviously I also do have my guard on in case I need any help from people I don’t know all that well or have some sort of doubts about, whatever their nature might be. If I didn’t take the potential risk and didn’t assume that all people are trustworthy in this sense, my day to day life would be much more difficult to manage, having only myself to rely on all of the time. Luckily for me, I’ve never had any particularly adverse experiences from taking this potential risk, largely because I try to, and have such a possibility, to rely on people I know well, like my Mum, for example.

I’d never really dwelled on this topic much, simply because there’s just no other way so I never thought there’s even much to think about, until my last therapist (for my regular readers/those who know me off blog, the one who was so obsessed with my blindness), made an interesting observation right after our first session, when she was guiding me out of the building, that I must be a very trustful person because I have to rely on others in daily life situations like that one. So that got me thinking because, aside from that practical stuff where I’m basically forced to trust people a lot of the time, I’m not really all that trustful at all. Although I didn’t tell her that, which perhaps also tells something about my degree of trust towards people whom I met for the first time a little more than an hour before. ๐Ÿ˜€

As I’ve already mentioned before, the person I definitely feel the most comfortable trusting with daily life stuff is my Mum, since we know each other very well. I also know that I can trust her with more private stuff than just guiding or describing something or other such stuff you could potentially ask a random stranger on the street for. Recent example – the MIMRAs (My Inner Mishmash Readership Awards). She had been helping me a lot with these, this year, and the year before. And I had no problem trusting her with the MIMRA cards, for which she did some initial designs so that the company who were making them would know what I wanted exactly, that she did them the way she told me she would and more or less how I explained to her I’d like them to look like. When the cards were ready, I trusted her that they look just like she said they do, and even trusted in her opinion that they are really nice and better than last year. I didn’t even think about not trusting her. I could be more wary of her intentions, get my iPhone, open one of the AI apps for the blind and see what colour it is, recognise the text on the cards with it to see whether there is really what I wanted to be written on them, but trusting her takes much less hassle, plus the app could get confused and say the wrong colours or misread something and then I’d be in a real conundrum as for who to trust. Then I even trusted her with addressing the parcels and sending them while I was writing the MIMRA post myself, without double checking if she didn’t mix the recipients up, on purpose, of course. ๐Ÿ˜€

So, yeah, with daily life stuff, I think there isn’t really any other way being disabled, so that it isn’t even a personality or character trait, but simply a coping/survival strategy you have to use.

Let’s talk now about this other type of trust. There are people in my life with whom I openly share a fair bit of personal stuff, including this blog, and really like doing so. For that reason, some people even think I’m open or outgoing or some other things like that. I like to think I have a rich and varied brain life, so even when I do not share a lot, there is still a lot I can and do share about myself and my life. ๐Ÿ˜€ Also what I share with people is always, well, usually, carefully filtered beforehand. If it’s not, it either means something unusual was going on either with my brain and state of mind, or in my life, at the time of sharing, or that I felt reasonably comfortable sharing it. Online, the third option can be that I somehow forgot to edit something out but if I’m writing something personal or deeply emotional I spend ages editing it, which minimises the chances of it happening. ๐Ÿ˜€ I still sometimes regret things I shared with people intendedly though if I come to a conclusion that I “exhibited” myself too much, especially in person. I kind of envy people who can just spontaneously pour out their brains “live” to someone but on the other hand I’d never actually want to do this I guess, there is something creepy about it. That’s probably why therapy has always been a difficult thing for me, you’re supposed to be an open book there, I just can’t do it, it creeps me out. When I was a kid, one of my weirdest fears was that I’d be sleep talking and say something that I think about or just have in my mind but would never ever want anyone to know. I didn’t have anything specific in mind that I wouldn’t want people to know, no dark secrets, just not having a filter while dreaming was a scary prospect. It still is although I’m not quite as concerned with it because as far as I know I’ve never sleep talked and I sleep on my own these days, as opposed to having roommates in boarding school and sharing one big bedroom with my family until the age of 10 when we moved. And now I dream a lot in other languages so chances are even if I sleep talked and someone heard it they wouldn’t have a clue whatever I was saying. ๐Ÿ˜€ Another handy advantage to being multilingual that I never thought of before, especially when living with monoglots. ๐Ÿ˜€

So, as you can figure out from that, there aren’t many people I could say I actually trust, and even if I do, it’s not like what some people say about their friends, that they could tell them just about anything and confide in without any worries or self-consciousness or anything.

Out of all these people, I trust my Mum the most. I know she also trusts me too, maybe even more than I do her because she shares a whole lot with me and always asks me for advice with really personal stuff. So I really value the bond we have. Since we are family we naturally have a lot of similar experiences or traits so that also makes it easier to trust her. But I never feel like I can be open with her regarding my mental health issues, and all the related stuff. Because these are not things she has any personal experience with, and she seems to find it very difficult to relate to/understand, and often reacts very emotionally to what I share with her about that, which typically doesn’t make me feel any better. She is very supportive in a practical sense, but she just simply often can’t understand what I’m dealing with. Combined with the fact that I have trouble sharing such personal stuff and even when I want to share something, it takes some effort from me, which means it might not always be the easiest to absorb for the other person or might make them feel somehow uncomfortable as well, it doesn’t make her a go-to person for me when I need some support because I’m particularly depressed or something. Such convos are tricky so we both prefer to avoid them if possible, which doesn’t mean she is in denial of my difficulties. But we can talk our faith, interests, though we have very different ones but still having deep interests overall is something that brings us closer, relationships with people and people in general, like neither of us can do with anyone else. That’s really nice. I also know I can ask her all sorts of awkward questions about life, be it its social side and how to handle a specific social situation, or to do with adulting etc. I often feel like I’m clueless about a lot of things that are obvious to people and I really value having someone who can explain it speaking my language, so to say. ๐Ÿ˜€ Only because we do share a lot, I often feel the pressure from her to share everything, especially when she realises that I don’t, and that drives me mad and has the opposite effect.

I can also be quite trustful with Sofi and like to confide a lot of low key stuff in her, and I like how it always seems to make her feel older than she is. Being a teenager, Sofi likes feeling older than she is and when someone treats her in such a way, y’know. ๐Ÿ™‚ I like talking fazas with her, for example now that I am desperately seeking for a new faza and looking for faza candidates, whenever there is a more serious one, I always let Sofi in on that and seek her opinion on the potential new faza subject, what she thinks about their music, and how they look like. The more disapproving of their music she is, the more happy I am because that means they might finally end up being good enough for my brain as a faza subject. Because Sofi’s and my tastes in music differ diametrically. I also like to know what my faza subjects look like, just for the sake of knowing, and I feel more comfortable asking Sofi who is in the age of crushes, which are a similar phenomenon to fazas in some ways, and additionally is a very visual and perceptive person, rather than bother my Mum with it. We just generally talk a lot with Sofi, mostly very casual stuff but I think we both feel quite comfortable sharing a lot of little things with each other, although with more complex things we don’t really understand each other that well as we’re very different and there’s quite a significant age difference between us. I also wouldn’t tell Sofi anything too serious as she is only a child and very sensitive, plus keeping secrets isn’t her strongest point. I can also trust her to help me with a lot of things like now with MIMRa pictures.

I also have a special sort of trust for my grandad. He has always supported me, no matter in what sort of situation. Even in situations when he doesn’t really know what it’s all about, he’ll always support me as if it was some sort of a rule he never breaks. Even when my Mum isn’t in my corner, he silently is. We don’t really talk together all that much though. We like being together in silence. When I was a kid, I always knew that he wouldn’t judge me if I cried openly in his presence or was super angry. And he always makes me feel safer. I mean physically, sensorily, I don’t know… But we no longer live close and so our relationship is more distanced now. Either way we never had as much time for just the two of us as I’d like, because I was in the boarding school a lot, he worked a lot, and there was always grandma. My grandma is a sweet, virtuous, charming and lovable person but I don’t feel quite as comfortable around her.

I also trust with some deeper things some of my online friends and am really glad I have them since I’ve started penpalling and blogging and like the connection we have. I like how I’ve found a lot of like-minded people on the internet in the recent few years, which means I can talk to them a lot of things we both like/have experienced that I can’t talk to with all the people above. I can talk about my interests or fazas with them more indepth, or the mental health stuff, or whatever else that we both get. This is so cool. Again though, I always feel the need to filter things a lot. I feel like I should mention my late friend Jacek from Helsinki in particular, with whom we had a very strong bond over our interests, which contributed to a level of closeness I don’t think I ever had with anyone else, though our relationship was nowhere near ideal as we both clashed a lot in terms of personality.

So there isn’t anyone I would be able to trust without any reservations. I don’t know if I should see this as a problem, or just as a fact, so I prefer the latter, but generally I just don’t think about it too much on a regular basis cus actually why think about it too much. I don’t lose sleep over it. Only sometimes when I really feel like I could reach out to someone but find myself unable to, even though there are a lot of potentially trustworthy people around me, then it bothers me a bit, but typically not for too long, because then in turn the idea of having such a close relationship scares me.

If it is a problem, I think it’s not because potentially trustworthy people or a potential “true friend” hasn’t appeared in my life or because I have never met anyone I could feel totally safe with and comfortable just being myself, feeling sure that they’ll accept me anyway. Or this may be a secondary problem only.

I know a lot of people who seem trustworthy, a lot of awesome, supportive and like-minded people, online in particular. So, what I think the actual problem could be, if it is a real problem, I just don’t feel safe opening up to people for real, or don’t want to overwhelm them, or maybe I somehow don’t know how to form such close relationships. Oh yeah, and what’s for sure, closeness is a nice concept but it also scares me shitless in practice. I just struggle with reaching out to people I guess, which means the real, strong trust can’t form on my end of the relationship.

But I see yet another option here. Maybe the problem is that there is a fair bit of pressure in our gregarious society to have a lot of friends, and for all of them to be true, eternal friends, with whom you can talk anything under the sun and share absolutely all ups and downs and everything in between of each other, and then maybe even a true soulmate for good measure. As I like to be different, if this is indeed the case, I am pretty happy to be the other way around and stay freely individualistic, not needing to feel obliged to share all the ins and outs of my life with another human being, or even a larger number of them. ๐Ÿ˜€

That’s why I sorta feel unable to address the other part of the prompt and (realistically) imagine such a person vividly, and especially my very trusting interaction with them.

How is it with you? Do you trust people easily? Do you have a lot of people you trust? Or do you have no one? If so, are you able to imagine someone whom you could trust and what they’d be like? Does it bother you that you have no one like this at present? And, do you have someone in your life that you trust totally, whom you can tell anything or ask for anything? Do you think it’s good/necessary/to have such a person? Or maybe you don’t like the idea for some reason and prefer to rely solely on yourself? Loooads of questions today. But I think this is a wide topic, so just tell me whatever your thoughts are about the whole thing or just the prompt. ๐Ÿ™‚

Question of the day (16th December).

What is a miracle that happens every day?

My answer:

I can’t really think of many literal miracles that would be happening around me as frequently as every day, and I do think it’s this kind of word which loses a lot of its meaning when used metaphorically too often. My first thought when trying to answer this question was: the fact that I’m using an iPhone. ๐Ÿ˜€ This really feels a bit like a miracle, and not even all that metaphorical, as I and people around me all had had quite a lot of doubts and it might have just as well not have worked out. But it did, and I’m so glad about it! But looking at it from a more serious angle, being a Christian, and particularly a Catholic, the answer to this question is really easy to find, only we often tend to underappreciate this miracle we get to witness so often, just because we see it so often and it’s so everyday, but also so difficult to grasp, unless you have some real grace to be able to do it. I am talking about transsubstantiation, which, in case you’re not familiar with this term, means that we Catholics believe that, in Eucharistic prayer during every Holy Mass, thanks to the action of Holy Spirit, the consecrated bread and wine change into Body and Blood of Christ. It definitely is a miracle as it is, like most things to do with faith, the kind of thing you just cannot explain logically and scientifically, and that’s the case with miracles, only just like I said we see it take place so often that it’s often difficult to really see it this way without really trying, and moreover to believe in it. Or at least that’s the experience I and some people I know have had. In any case, this is a great miracle and I am very grateful for it every time it happens in front of me and try to see it for what it is.

What’s such a miracle for you? Do you see any miracles at all around you? Do you actually believe in miracles that they ever happen? ๐Ÿ™‚

Question of the day (2nd December).

Time for some questions of the day catch-up finally! I’ve found some interesting would you rather questions, and I thought I’d use these.

Would you rather lose your sense of taste and smell or be red-green colour blind? (if either applies to you already, would you rather see all colours/have the lost senses or win 1/4 of a million dollars?)

My answer:

This is a funny and interesting question from my perspective because I actually do not have the sense of smell, I don’t even really know why, or in any case it’s very, veeeery bad and I can only smell very strong things which are usually things like perfumes and the like and even then it’s more like I can feel them at the back of my throat while they’re being sprayed or shortly after rather than actually feeling the smell because I wouldn’t even really be able to distinguish between them and say what they smell like or not precisely. I used to think for a long time that perhaps I just don’t know how to interpret the olfactory stimuli or something, but is that even a thing? Can someone have a perfectly functional sense but not know how to interpret the stimuli? Sounds totally absurd whenn you think of it, and my Mum says that she doesn’t think so. I don’t think so either but that doesn’t mean it can’t be so. There is something that feels creepy to me about the idea though, don’t know why… I am also totally blind so that includes colours, naturally. ๐Ÿ˜€ So, hmmm, assuming I have any sense of smell left, I could happily give it up ’cause it’s not really useful for me at all, but since the question says smell AND taste, that’s out because I would never give up my sense of taste. I love my food and I think I have quite a good sense of taste and life without it would be super bland (and just think of it… living with two senses?! that sounds miserable ๐Ÿ˜€ well I know we actually have much more than just the five senses but still…) but more importantly I am a synaesthete with multiple different types of synaesthesias, as you may already know, and one of them is auditory-gustatory and lexical-gustatory (it sounds oh so fancy! But I like it and I like the way lexical-gustatory tastes) so when I hear something, especially a word, it has a taste for me. And I love experimenting with my synaesthesias and finding sensorily satisfactory sounds, words, tastes or tactile textures, and all my synaesthetic experiences can often bring me a lot of pleasure. So it would suck if the whole gustatory element was suddenly excluded.

Since I can’t see colours, the colour blindness or lack thereof wouldn’t change much in my life at all, especially that I also have no actual, physical experience of seeing colours, even if I have some idea about them which apparently makes sense from the sighted point of view. Also because I am blind since birth and there is a limitation to at what age your brain can learn to see, even if I was to somehow technically be able to see colours now, I still wouldn’t be able to recognise/interpret all the input because my brain hasn’t learnt how to do it. But I’d much more happily lose whatever in my eyes should technically be responsible for seeing colours since it ain’t working anyway to keep my sense of taste.

Considering the other part of the question, which is probably more applicable in my case, hmmm, I’d like to be able to experience all the different smells people feel but mostly just out of sheer curiosity. I haven’t ever found that my lack of sense of smell has ever been disabling or limiting to me in any way, so I don’t really miss it or really wish I had it. Seeing is too abstractive to me to actually want it, and if I were to suddenly start to see it would turn my life upside down and I have no clue how I’d handle the change, I suppose it’d be quite shocking. So, yeah, definitely 1/4 of a million dollars for me, yay! You can always make use of that, or if you have no ideas or needs, you cann share with people or something. That appears the most useful option to me. ๐Ÿ˜€

What do you choose? ๐Ÿ™‚

My Inner Mishmash Readership Award #2! And the winners are… *don’t read if you got a pingback and like surprises* :D

Hi all you lovely people you! ๐Ÿ™‚

Phew, it’s been quite an intense week! I know it’s super late compared to last year and am very sorry for that, but finally, it’s time to reveal this year’s winners of

My Inner Mishmash Readership Award!

My Inner Mishmash Readership Award (or MIMRA for short) is an idea that I came up with last year, where each year, around Christmas, I award three of my

most involved, insightful and engaged readers of My Inner MishMash as a way of expressing my gratitude and appreciation for their presence on My Inner MishMash, and also simply as a way to have some more fun on here for all of us, pre Christmas. Of course I do appreciate every single reader of my blog and am so happy for all of you who are stopping by, but quite obviously I can’t award everyone who visits my blog, so in a way this is also a more symbolic way of appreciating all of my readers.

So, without further ado, I am exxxtremely exxxcited to announce that the winners of this year’s My Inner Mishmash Readership Award are… *applause, drumrolls, fanfares, confetti etc.*

Meg of Where Good Advice Happens,

(and this is her second MIMRA)

Ashley Leia of Mental Health @ Home

(and this is her second MIMRA as well)

and

Astrid and her whole system Astridetal of A Multitude of Musings

.

Meg and Ashley are literally as lucky as they can be, because you can only win MIMRA twice in a row! Although Sofi is trying to convince me that it should be thrice, so… I don’t know… we’ll see next year I guess. But you can lemme know what you think of this idea if you want.

Thank you so very much to all of you, the winners, for being such engaged readers of My Inner Mishmash, such great supporters of Misha and me and such cool people overall! And thank you to all of my regular readers for all their extremely valuable input! ๐Ÿ™‚ And HUGE thanks to my Mum for helping me with this whole thing, brainstorming ideas with me, designing the cards etc. because it just wouldn’t work out without her! ๐Ÿ™‚ Last, but by no means least, thanks to Sofi, thanks to whom there are some pics with this post that you can enjoy. Sofi has made some of them and then today has helped me a lot with selecting the photos for this post and captioning them. After she captioned them, somehow I lost or couldn’t find her very descriptive captions after transferring the photos

This MIMRA has just been sent out and I had no clue which photo was which and got really annoyed and was about to give up on the whole photo thing, but eventually Sofi helped me once again change their names to something more descriptive than img0185 so that I knew what I was posting, lol, and do alt texts properly. All that despite she’s having a really awful day today because she’s sick.

I sincerely hope it’ll arrive to people at least very shortly before Christmas, but since I sent it out almost a whole month later than I did last year (guess I’ll have to start the preparations in August rather than in September next year ๐Ÿ˜€ ) because of the delay with the cards company and some things that have been going on for me personally as well as for my Mum, and since the mail in many countries is overloaded due to Covid and people ordering a lot of stuff online, at least from what I’ve been hearing, it’s possible that, if that’s the case with the mail in your country, you may need to wait for your MIMRA a bit longer than that. Even without such complications, I remember that last year’s MIMRA for Meg was going very slow, but that’s probably because our mail here always tends to be slow with foreign mail for some reasoon, at least in my experience. ๐Ÿ˜€

As a compensation, the MIMRA packages this year have a bit more content than the year before, but to be honest it wasn’t really even planned. Here are some pics (but with the MIMRA boxes closed, so you can’t take a peek in this year, ha, ha, more details about the content later)

Misha is sitting on the stack of grey MIMRA cartboard boxes which are next to my wardrobe. He is looking at you.

Misha sitting on the MIMRA boxes, which are decorated with three Christmas baubles from Sofi's tree, one bauble is grey and the other two are white.

And here’s a little bonus for all of you who like to look at Misha and often ask me about his pics, just because I had one more at hand and because it’s a special, exceptional day when images are being posted on this blog, lol, though it’s unrelated to the award itself.

Misha stretched out on the sheep skin on my bed.

I won’t be telling you what’s exactly in the MIMRAs, I myself am not a huge enthusiast of surprises but I figure most people do like them, but to give you a bit of an idea, there are some Polish edible goodies in there. My goal with MIMRA is to introduce people to new, yummy things that are only a thing in Poland, because I think it’s fun to see how each country has its own candy and stuff. And we generally have a lot of yummy food here. Only it’s so universalised these days (plus I myself haven’t been abroad much which may be an important factor here as well) that sometimes it’s hard to tell what’s Polish and what’s just somehow adapted or something. Last year’s MIMRA winners may remember that one of the things in the award package were biscuits with chocolate and jelly which are called Delicje over here. I was absolutely convinced they are a Polish thing, until last year’s MIMRA winner

Carol Anne of Therapy Bits, and some of the littles in her system,

enlightened me that they are also in Ireland, under the name of Jaffa Cakes, and they do appear to be in many other countries as well! So this year I did a bit more research and hopefully these things are actually exclusively Polish, or at least you haven’t tried them before, but even more importantly that you will like them. However Meg told me that she really enjoyed these Jaffa Cakes and she can’t get them anywhere and would like them in the MIMRA again. I originally didn’t plan it to be so, but because I found something that I thought could be a fun thing for Ashley and Astrid but maybe not necessarily for Meg, she did get a package of them eventually. Ashley and Astrid have something else instead. I’ll just say that it’s something to have a bath with, and I remembered that Meg can’t have baths with such bath products so I think it’s fair enough.

I hope you guys will like your MIMRAs and enjoy them at least as much as I did making them, and that they’ll bring some happiness to you for the Christmas time. ๐Ÿ™‚

 

Question of the day.

Do you like to cook and/or bake?

My answer:

I thought I’d do a bit of a rambly post of this. Just so you know. ๐Ÿ˜€

Whether I like is one thing, whether I can is another, lol. Because my dexterity is out of kilter – mildly but enough that it does affect some areas of my life and functioning – I never really had any spectacular achievements in the culinary field, in fact it often was exactly the opposite but at least the perk of it is that it can get interesting. ๐Ÿ˜€ When we had such class at school which involved cooking or baking among other things (I’ll write about that a bit more in detail later) I always preferred to have a bit of distance to my lack of abilities in this field so would tell people that I’d rather allow my creativity to flow freely rather than have some damn recipe rule my brain and tell me what I’m supposed to do. Who cares if it comes out inedible, lumpy or something? It’s a piece of art so it would be a sacrilege if you tried to eat it anyway. And esspecially when baking, I would openly show my weird creations around the class to the great amusement of the other kids. It’s always been one of my coping strategies that I’ll either laugh at myself or things that are happening, or distract people from something I don’t want them to talk about/notice by making them laugh, but in this case I didn’t really have a huge problem with my lack of culinary abilities, I don’t think they’re necessary these days in the age of caterings, though are certainly extremely useful. Probably a factor influencing this was that these classes were generally not very competitive as the few other kids who took part in them with me had some form of learning disability, which for most of them didn’t affect their dexterity or coordination so that they didn’t have exactly the same problems as me and with the same activities, but had others, often more challenging ones, instead, and so if they were laughing that was not really in a mean way, and I even sort of liked entertaining them. I had also a very good relationship with the teacher, she was in fact one of those adults there with whom I had quite a good relationship and liked them, I know she liked me a lot as well, and she was often very supportive of me.

I do not either cook or bake independently and never have, but when I do get enough individual support and guidance with that, the results can be tolerable, but then again, I feel like it’s not really exactly my merrit then, but rather the person’s helping me. This is quite an interesting and to a degree even fascinating field (maybe not hugely fascinating like to a degree my languages are to me or some other things but it’s interesting for me to observe how people cook or bake especially when they’re particularly talented and how something they’ve had in mind or some recipe on a piece of paper develops into something very specific it’s a little bit black magic to me ๐Ÿ˜€ ). My Mum says cooking is all about chemistry and physics, which I think is very true, but might be just another reason why I find it as tricky and a bit abstractive as I do, also with all the proportions in recipes and all that.

Going back to that class thing, what it was in fact was a sort of fusion of art class with stuff like knitting, cooking, baking and other manually focused activities. I have no clue how you call it in English if at all, but in mainstream schools here in Poland, children have class which is called the same but they learn things like calligraphy or how to pass a bike licence or such. In our blind school, that class probably wouldn’t work out or even have much sense in its mainstream point, so I guess they must have adapted it to be something more suitable to our abilities and useful at the same time. It was more like what people my parents’ age had at schools during the communism period which was called practical and technical activities, or something like that.

So as you can imagine knowing the above about my coordination and culinary skills already, I was generally super lame at that subject, but the teacher was always very understanding of me and I always got B’s at the end of the year, though wondered for what. ๐Ÿ˜€ I liked the cooking and baking because we typically did some very yummy things but at the same time felt useless because rather than contributing to it as much as everyone else did, I was more likely to screw something up, possibly ruining everyone else’s efforts as well, or at least come out with bleeding fingers or something unless I got a lot of help, and even if the other kids wouldn’t have additional difficulties, they were still blind, and blind people even when they’re only blind, do need to at least be shown individually how to do some things if they’ve never done them before, so she couldn’t focus all her attention on me even in such a small class where there were only like 4 people or so. So even if I didn’t have particular problems with the sole fact that I wasn’t able to cook or bake, it was still quite distressing in that class, at first.

Until somehow one day, I guess it was Mother’s Day, we were making cards for our mums, and I wanted to include a poem on mine, and I came up with it myself and the teacher wrote it on my card. I’ve always considered myself much better at prose than poetry and I do like writing prose much more thann poetry, but she decided that my poem was great and witty and long and to my huge embarrassment showed it to my class teacher and everyone else who was in the teachers’ room must have heard it as well although it was just for my Mum, and she couldn’t get over it as if I wrote God knows what a masterpiece. And since then, we’d developed an unwritten agreement of sorts with her. She would help me greatly with all the technical stuff – not just cooking and baking but anything that I found more challenging to do by myself so basically almost anything in that class – or would do the whole job for me if it needed to be done well and quickly, or I wouldn’t have to do it at all if there was something else I could do, and instead I would do a lot of writing if there was any need, especially for poems because these were typically writings on cards or other occasional stuff. For example there was one boy in the class for whom I wrote poems for his aunt who was his main carer I believe and he always seemed to like it so much. Or I would write for school – Teacher’s Day, enf of school year, Christmas etc. – I can’t say it was something I liked a lot, because just like I said I don’t really feel very comfortable in the world of poetry either as a writer or reader (except of Vreeswijk and a few other poets), and I found especially the school poems quite an annoying chore, but at least I could rhyme well and make even verses which were even a bit witty sometimes which seemed to be enough for everyone so I was glad there was something I could do better than cooking and make myself kinda sorta useful. The only type of poetry I enjoyed writing, for myself, were some spontaneous, weird, long-winded, full of wordplay, immature- or black-humoured poems whose topics I found hilarious and which made my roommates laugh. I guess though what must have been most funny about them was the language, the way I wrote them, rather than what I was writing about, that’s at least how I see it now, the plots themselves were mostly rather immature just like I said.

The good thing about that whole writing thing though was that sometimes there were art competitions organised somewhere in the country, and our school often took part in such thiings, especially if they were for people with disability. And since art competitions are often also literary competitions at the same time and you can choose which form you prefer, and my teacher knew I’m better at literature than art, she would always encourage me to take part in such things and then I could do a bit of prose. While everyone else was making their artworks, I would be making up some short story and then dictating it to the teacher (as they had to be in normal print typically). I didn’t like the dictating part really because, well, you often change your mind about stuff while writing, and with dictation there isn’t really as much room for that, you have to form your sentences well from the start, know what you want to be happening next in the plotline so that the other person doesn’t have to wait for ages until your creativity strikes, and at the same time it also requires a lot of spontaneity and is a bit like stream of consciousness writing in my view, only more stressful because you have to be mindful of the quality. I don’t know why I simply didn’t write these things on the computer or something, but I guess there must have been a reason. But overall it was always an exciting experience and one such time my dictated short story must have actually turned out quite good quality to the judges, because it got a first place – it was a Bible-inspired contest and I wrote a story inspired by the parable of the prodigal son and based on a real life story from my family. –

When I was out of school, I asked Mum to teach me some basic culinary stuff. I also thought I’d like to be able to help her a bit, because my Mum is the only person who cooks and bakes in our house –
Zofijka now does some occasional cooking or baking but only when she’s in the mood really, although she’s extremely good at it when she does do something. – And I thought it could be interesting and that maybe now that I’d have my Mum’s undivided attention it would be easier for me to learn and practice and for her to actually teach me things than for my teacher. It wasn’t really as good an idea as I expected though, because having to instruct me and often help me with more complex things made meal preparations longer and actually my input didn’t help at all, but instead contributed to Mum having to spend more time in the kitchen. Plus she didn’t really have the patience or the skills to teach, which I guess is a common thing with people who are self-taught at something. Finally one beautiful day I was grating vegetables and cut my finger really badly, and that was the end of my cooking adventures practically. ๐Ÿ˜€

Still, because I feel a bit sorry for Mum, even though she hardly ever complains, I traditionally ask her whether she wants help when she’s making some food but that’s more of politeness or something rather than I actually expect her to need/want my help or think I could be helpful, she’ll always say no but I ask anyway I guess to show her that I appreciate her efforts and would help if I could, in case she needed it. Sometimes she does say yes and then we do something together but that’s when she’s really got the time and energy to spare.

Given all that I wrote above, I don’t really know which of these activities I like more as I have very limited experience of them, but if I really had to choose I think I’d go with baking, there’s something atmospheric about it.

Okay, your turn now. ๐Ÿ™‚

Question of the day (15th November).

How was your day, or how is it going, if it’s much earlier where you are than here? What about last week?

My answer:

Today is okay-ish I guess. I’ve been feeling kinda shitty lately, mainly because of depression I guess, but I can’t even describe exactly what’s been going on, the main point is that it’s getting better. By this time last year, I had my MIMRAS sent out, but things have been a little chaotic for us here as we’d had a bit of a house renovation and MIMRA went on the backburner for a while as it’s my Mum helping me with the practical side of things and she’d crash having to do everything at once. We planned to finally order the MIMRA cards today – we’ve made friends with a company who makes them for me the way I want, when it’s possible, lol. – But it didn’t work out so hopefully we’ll do that tomorrow. That being said, plus the fact that the mail in many countries seems strained by Covid, there may be a fair bit of delay in MIMRAs arriving to their recipients, so apologies to all the unofficial winners, as I know they can take a long time to arrive even without a delay on my part.

As for the week, as I’ve said it was a bit chaotic with the renovations, even though they didn’t directly affect me as it wasn’t my room that was renovated. Sofi’s got a lot of changes in her room and while the works in her room continued, she temporarily lived with me. As you probably know if you’re a regular reader, we have a strong and generally good relationship with Sofi, but we’re also very different which causes a lot of emotional short-circuits between us sometimes, and I’ve gotten out of habit of living in the same room with other people I guess so it was a bit mentally exhausting and I was euphoric last night to be able to sleep alone in my bed. ๐Ÿ˜€ Sofi not so much, she loves having company even at night, and even tried her best to invite me to sleep with her in her renewed room but that was not an option as far as I was concerned, may be later when I recharge a bit. We also had the workers around all days and that felt kind of unsettling and awkward for me long-term, I hate having strangers in the house for longer periods of time. And some things in our house have changed now, so I had to adjust to it. It wasn’t a huge or very scary change but it did require some effort from my spatially disoriented brain and was a bit frustrating as changes tend to be.

How has it been for you? ๐Ÿ™‚

The challenging life lessons.

I don’t have anything more constructive to do for the time being, so thought I’d write another list inspired by Listify by Marina Greenway. Here goes the prompt:

ย ย  Difficult challenges that I pushed through (and what I learned). You have been through a lot. Pushed yourself, faced difficult situations, overcome challenges – all of it. List those moments and look back every now and then to acknowledge your journey and appreciate how far you’ve come.

The following list is not going to be exhaustive, we all have too many challenges to list and I’m too lazy to that, that would be endlessly pathetic and also too intimate, and I’m probably going to overshare massively anyway. I’ll write about major things. Because I’m supposed to include both the challenges/events and what I learned from them, and I want you to know the context and also just write more about it so it’s not just a dry list, it may not be your typical list with short elements. Actually, on second thoughts, I decided to make it a bit unconventional and will simply put each point under a separate heading because sometimes it may get lengthy and I don’t want to be limited to one paragraph which will be hellish to read. ๐Ÿ˜€ Now it’s actually no longer a list, but oh well. Does it matter a lot?

Also, before I begin, I feel like some minor, just-in-case trigger warnings are due. Brief mention of suicidal thoughts from the past, mention of accused suicidal thoughts (however absurd that may sound), brief mention of self-harm, in-depth discussion on false accusations of child sexual abuse, and generally challenging topics so if you feel like anything may be difficult be careful and don’t feel obliged to anything. Another disclaimer is for the length – it did turn out huge haha, and I was writing it for ages. Again, don’t feel any obligations to read everything or if you don’t think like reading a lengthy post don’t pressure yourself at all and do something more relaxing.

ย ย  I was born blind

Not like I remember any of it, haha, but blindness, even when it’s congenital thing and you can’t imagine your life any other way, is still more or less of a challenge. I don’t know if I learned anything specific from this… I mean, being blind you definitely learn things that you wouldn’t otherwise, but I never knew anything else so I can’t really compare it with anything I’d know before. Someone who lost their sight later on could have said that they have learnt to accept their blindness over the years – I was saved the problem as that has always been the only reality for me so I didn’t have to adjust to it in such a dramatic way. – It certainly was a difficult lesson for my parents though. Speaking of my parents, perhaps what I can say could be that I learned from quite an early age that I have a really loving and accepting family and not every disabled or non-disabled child is as lucky as I was.

Living 10 years in a boarding school

That was a huge challenge for me. It’s always difficult for any child to separate from their parents at the age of 5 and see them every two weeks at the very best, often much less frequently. If the environment where they live is friendly and there are other kids, as is the case with boarding schools (I want to be an optimist in this case and do hope most boarding schools are child-friendly and mine generally was, though I realise it’s not always the case), most kids grow to like it over time and bond with people there, though obviously they still miss their parents and, given the choice, would much prefer to live with them. But when they do go home, they’re often so used to being with their peers and the boarding school staff all the time that, while they’re happy to be at home, they may even miss their school and then be happy when going back there, to hang out with people they know well and have things in common with. That was not the case with me. I never fully adapted to living in such a way. Not because my school was scary or awful, though there were many things that I strongly believe shouldn’t take place. I guess I just wasn’t the type of kid to thrive in such conditions. Often when I’m close enough with someone to tell them about my experiences with this more in-depth, people will readily assume that my, or any other child’s in a similar situation, parents are to blame here. I don’t think so. There’s no way you can tell at such a young age whether this will be a good choice for your child or not. You can have a very extroverted, outgoing kid who loves spending time with their peers all the time, going to sleepovers, being in charge maybe, but stay in a boarding school and separation from family or any other subjectively negative experiences they may encounter there might make them much less self-confident and unhappy. An introverted child who hates leaving home even for family holidays and can’t find their place in a group may discover their true self in a good boarding school and make longer-lasting relationships because they can get to know their peers more deeply. And as for my personal case, my parents didn’t have another viable choice, or didn’t know about any. It had quite a destabilising effect on me that I had to change places so often. The result was that I didn’t feel at home anywhere and I didn’t have any sense of belonging. Because I hated the boarding school and didn’t want to have anything to do with it and that I felt like it smothered my sense of individuality (though I only fully realised what that feeling was exactly and the extend to which it happened after I left), I felt repulsed by what people were saying there a lot of the time that we should think of it as our second home. I didn’t understand those who actually treated it as such. I hated whenever someone would say about themselves, or moreover about me, that I “lived” there (we have two separate words in Polish for living, one for living as in being alive and another for living as in dwelling somewhere long-term, and I’m obviously talking about the latter). I wasn’t living there, I just was staying there at the time. I was scared thinking of girls in like their 20’s who were still there (most of them because of doing some higher education (most people there started proper schooling later than in mainstream school so it wasn’t that unusual for someone in their early 20’s to still be in higher education, that was actually the case with me too, only not in there) or studying at a mainstream university which was located nearby so it was easier for them to still reside in the same place that they’ve known for years and which was adapted to blind people in every possible way) or even older blind people who lived in this whole centre permanently (either because they worked somewhere there or just felt safest there and didn’t want/weren’t able for some reason to face the big wild sighted world) and I was wondering when I was little whether that was going to happen to me too, and then even later too but in a more cynical way rather than because I just didn’t know. I always waited when I’d be able to go home but I never felt truly at home either. It was like a holiday both for me and for my family, the more that often I’d come for summer holidays, or Christmas, or Easter, winter breaks or other. I loved it there but always felt more like a guest. I never was up to date with whatever was happening in our community or in the family. I felt like some very dignified stranger in some ways and didn’t like it. My relationship with my brother – which was never strong and kind of ambivalent, was particularly affected by it. I could never truly enjoy my stay at home because I was constantly thinking about how I needed to go back there soon and stressing over it. I hated being sort of on the move all the time. Yes, I did get used to living there, like you get used to living with one arm when you have it amputated at some point, but I was never comfortable with it and never fully accepted it. I did have kinda sorta friendships in there, liked many people, many people liked me, but these didn’t feel like true friendships, often felt either not really satisfying to me or sort of forced on the other end. I never had anyone there that I would miss when at home or think about what we’d be doing after the holidays/weekend/school break. I felt awfully inadequate and moreover awfully guilty for being so inadequate and not being able to feel good there. I tried to pretend and I think I was quite good at it or at least at stifling negative emotions (though sometimes in my first years of mastering this skill things would get really wild when there was no space left and it all popped out at once, until I learned that you can also implode and not just explode) but ultimately at least the staff knew that I didn’t feel good there, though it’s possible they knew it mainly from my Mum who couldn’t get over it naturally and her way of trying to get over something is talking and talking and talking and crying, they surely learned from my Mum that I was cutting myself, for example, which my Mum was supposing. During my whole long stay there, I only met one girl much younger than me who had very similar issues to me. Sometimes I thought everyone must feel exactly the same as me and they must be just acting, but why would we even be acting in front of each other so much that absolutely nothing would show. Some of the girls in my group that I was closer with knew that I didn’t feel exactly great there, but they never mentioned feeling the same. Yes, of course, everyone misses their parents, I often asked some of them about whether they do and most naturally they always did, and school work is always boring for most kids, no matter where you are, right? But no one seemed to feel the same desperate kind of thing and instead enjoyed being able to be around other people with whom they shared so much in common because of living together for so long, being blind and often some common interests. People bonded with the staff a lot, some girls sometimes jokingly called some staff members their another mum or something. Many happily went on summer camps with the group despite spending with these people all year. Or devote one holiday weekend to spend it doing some fun things with the group as well, like going for a trip or something. my parents strongly encouraged me to take part in these things as they thought that would integrate me with them more but it was always quite nightmarish for me. There was only that one primary school girl, whom I happened to get to know more closely because she was from the same region as me so we would often go home together – like I would go with her parents and she with mine so that made it more possible for us to be at home more often. – I know she was self-harming and also finding it difficult to adapt there. She’s a teenager now though and a few years ago I saw her on Twitter where she wrote a lot about her school life – still in the same school – and very positively. So I’m very happy for her that she did eventually found her place there, even though after I got out of there me and my Mum were strongly encouraging her mum to take her out as well. Only now I have even bigger problem with myself, as that just confirms my… ahem! uniqueness. ๐Ÿ˜€

What have I learnt from that? First I have to say I learned some independent living skills there. Not as many as a lot of other people there and not always as well, I think due to a whole mix of factors, but I definitely did learn things that I likely would not have learnt otherwise at all, and so for that I am grateful. As well as for learning to read, I’m so flippin happy to be able to read Braille. I know there are screen readers, audiobooks etc. and many blind people live happy lives without using Braille at all or say it’s impractical but for me, being able to read something vs hear makes a world of difference.

Not to invalidate other people’s negative or traumatic experiences, no matter how minor they may seem to me. I hate the word trigger or trauma in context of myself about which I wrote here a few times earlier, because it feels like trivialising people’s serious traumatic experiences, but at the same time, paradoxically, I’d say if I do have any actual triggers it’s when someone else invalidates someone’s negative experience in any way, for example tell them that it’s impossible for them to be traumatised by something. I only recently discovered how much it can upset me and drive me absolutely nuts, much more than when someone does that to me.

It taught me to appreciate the good things while they last. To cherish my private space and time I can spend alone. To appreciate music that I love and that I can listen to it any time as I couldn’t do that for many years of my stay there. To appreciate my family, my roots, anything or anyone that I feel a close connection to. In hintsight, it made me appreciate my individuality, quirkiness and realise that I am not, can’t be and don’t have to be like other people. It works both in a negative and positive way because while I love being different and quirky and don’t have any interest in being normal and average, at the same time I have strong feelings of inadequacy and strongly feel all the downsides of not being normal. I try to have a distance to it though. It made me understanding and more aware of the differences of other people and more interested in them and in what they’re actually feeling. Because what they’re showing or saying or doing or not doesn’t always have to mean it’s in line with what they’re feeling. Just in case you didn’t know. ๐Ÿ˜‰ Also in hintsight as well, I learned to accept my mental illnesses to which that experience had largely contributed, but I was only able to do that after I left, despite I knew deep down much earlier that things weren’t okay. It took me a long time to accept what was going on and put my finger on what it was exactly, and obviously I needed the help of other people. And oh yeah, I learned how to be a defensive pessimist, which skill serves me very well to this day, yay! But I can assure you that the learning process was quite shitty haha. I’ve learnt that different people may see one situation entirely differently. I’ve also learnt not so positive things, like have gotten quite an ingrained belief of being extremely not resilient and mentally weak, or the bottling up stuff I mentioned before.

I experienced two years in an integration school

If you don’t know what I mean by integration school, it’s like a cross between a special school and mainstream school, where disabled children learn with able-bodied children, but it’s meant to be more inclusive and generally supposed to be better prepared for the needs of disabled children or children with any special needs, like there may be teaching assistants more readily available as teaching assistants are not something you’ll encounter in every normal mainstream school in Poland (not necessarily even in an integration school either). As you can imagine from what I wrote earlier, my Mum was also quite desperate and not happy with the boarding school situation and wanted to help me. So when I was 10, when my parents left me at the boarding school at the beginning of a school year and I was doing quite visibly unwell emotionally, my Mum started to look for some alternatives and she asked in a nearby integration school kind of specialising in teaching visually impaired students or in any case most of their disabled students were visually impaired, whether they perhaps could admit me, without huge hopes as she’d already asked before. Miraculously, this time round there was a different headmistress and she agreed. When I learned about this from my Dad I was absolutely euphoric. To fully understand my euphoria, you have to realise that my idea about what an integration school is was rather peculiar. My absolute biggest, secret unrealistic dream was to be homeschooled. Or if not homeschooled, then I wanted at least to be in an integration school. Probably because most kids who left the special blind school I was in while still being in education, went to an integration school (naturally closer to home), I thought an integration school is any school that is not a boarding school, from which you go home straight away. When I was in nursery, there was one girl in my group who lived close enough to the blind school to be able to go home every day. One day as I witnessed when someone was coming for this girl, I said: “Wow, she has such an integration!” I couldn’t understand why all the teachers burst out with laughter. ๐Ÿ˜€

I don’t think I thought much about what it was going to be like, in practice, except for what I knew from Mum that the classes there were similarly small as in my school and that some kids there were blind and some were not and some were in between. And, of course, that I’d be at home every day.

The experience wasn’t bad in itself. It was just that a lot of nasty things happened in the meantime, that my brain state at the time was really awful and I was one super neurotic and constantly ruminating mess and got my first major depressive episode diagnosis around that time, as well as that I simply wasn’t a fit for that place either. My Mum says now that integration schools might be good for children who use wheelchairs or such but that they aren’t good for most if any blind children. I’m not sure I agree with that, it may not be the perfect idea but nothing is perfect and I know a bunch of blind people who thrived in integration schools or even completed their whole education until high school/college in such a way and are all for integration and it’s great. It’s just not a fit for everyone. For me, perhaps the more with the other issues that I mentioned that started surfacing big time, it was quite challenging. Practically – because I wasn’t independent enough – socially – because I couldn’t find my place in there and get along with people at all – and to a lesser extent academically. My Mum struggled with the idea that, rather than having the school books provided by the school as was the case previously, she’d have to get them printed in Braille and pay for them herself (which is not a cheap business), so I only got the most necessary books. My Mum was expected to help me with more complex/less easily adaptable school work or the things I struggled with the most, aka math, which is typical and mostly understandable practice in integration schools but my Mum wasn’t ready for it nor used to it, and hardly able to do it with baby Zofijka, the more that she isn’t particularly good at math either. I wasn’t used to needing this much help with school work either, before that I usually wanted to deal with it as fast as possible to be able to do other, more interesting things, had no time and patience for waiting for someone to come and help me, even if I sometimes needed it, so it was frustrating for us both. Eventually, after the two years, I left it. The final reason was not my not coping there though, but something more major. And, as there weren’t any more options, I went back to the boarding school for another five years.

From this experience, I learned more about the sighted people’s world. It’s a commonly mentioned disadvantage of blind schools that people in there are in their own, blind environment and, if they don’t have other, sighted friends or some other circle they would spend time with it’s easy to lose touch with what it’s like to live in the sighted world, and connect and relate to sighted people, especially with people who really spent there years and had few chances to really engage with sighted folks more. My primary source of such knowledge were books, just as books taught me about any other things that average people do, not just related to sight but socialising for example, haha, but that was an interesting early experience too.

I’ve learnt that integration school is another place where I don’t fit in, which instilled in me the conviction that there are real many places, situations and groups of people where I don’t fit in. Today I’m more okay with that than I was then. I got to learn some Swedish and generally my knowledge about a whole lot of things increased a lot.

I learned the same thing that I previously learned at the boarding school and also later on in all the other schools I went to, that the education system is evil and I still think very much the same and delight in ranting about it with whoever has similar views – which at this point is most often Sofi. – ๐Ÿ˜€ –

During my time in the integration, I had an Achilles tendons lengthening surgery, after which I was recovering in casts for 6 weeks and then getting back to life for a few months

2007 was a horrific year for me. At least it was balanced with only two but both great things – Sofi was born, and I received First Communion, although the significance of the latter didn’t fully sink in until much later even though my family was very religious. This horrific thing happened at the very start of my integration adventure – I started out in there in the middle of September and had the surgery in early October. – It was a possibility that was talked about previously a lot, I visited a few orthopaedists who all said I’d need it at some point. Finally I had even some very distant date for it in some huge faraway clinic and a hazy idea of what this surgery would entail, and just one day after coming back from that clinic, my orthopaedist said that he can fit me in for the surgery right away, here, in 5 days’ time. So obviously my parents jumped at the chance to have it dealt with and not have to think about it longer than necessary. I was quite stressed about it but I was also stressed out about a billion other things and didn’t really know what it would be like so tried to believe what everyone was saying that it would be okay, and by that possibly minimise the amount of stressful things, you can’t ruminate about everything at once. And it actually was okay. Except for that the surgery didn’t really work long-term at all, and for some reason the whole experience was really creepy for me. Again, perhaps it was just that I was generally in a rather bad emotional condition so anything would crush me. Or what I’m more inclined to think, my overall mental capabilities and the level of resilience are such that it would crush me any time. Or maybe, as my therapist later said, it was a shock for me because no one really took the time to explain to me the details of it. Maybe it were the accompanying circumstances – my Mum being chronically busy with Sofi and the building of our new house, me not having much to do and being chronically bored etc. – I only know it was super creepy and still when someone has something broken and is in a cast, and I happen to touch it, I get nausea and chills, and sometimes I still have dreams about the damn thing.

My Mum really wanted me to be admitted to the hospital for as short as possible and the doctor agreed, so I was only admitted one day before surgery and was discharged almost as soon as I woke up afterwards and they made sure everything was alright. That was scary too. Not just because I never was in an actual hospital by myself, but also one particular creepy thing comes to mind when I think about it, which may be as much important for the whole picture that it could have added significantly to my overall perception of the situation. In the hospital room with me, there was a girl my age after an awful car accident and another, much older one with something more complex. She needed a lot of assistance with everything, but one of her issues were also contracted Achilles tendons. I didn’t know what conditions she had or anything. I only knew she had some sort of a surgery a few days ago and accidentally learned about her Achilles tendons. The doctor was passing by our room while talking to someone and said: “There is a girl with contracted Achilles tendons here and we’ll be discharging her tomorrow”. This other girl thought he was talking about her and was overjoyed as she’d been in the hospital for a long time. I don’t know what sent my brain in such an irrational direction but I thought that OMG, she has the Achilles tendons too, so will that be how I’ll be after this surgery? She had to be fed and needed help with changing positions, a whole lot of other things that I’d always taken for granted.

So in the hours leading up to the surgery I was massively stressed. Finally, after I woke up from it, of course I was so foggy I could barely make sense of anything. The first thing I felt was that my legs were stuck in something, and I thought these were some sort of huge buckets, and I wondered why I can’t get out. Then my Dad said something like: “Wow, what fashionable winter boots you have! Aren’t they a bit too warm for autumn?” I laughed and then it sank in and I realised that I almost couldn’t move my legs. From what I know now, my doctor was really generous in covering me in casts, because they’re not normally quite as huge with this surgery as the ones I had. They went from slightly above my knees all the way to my feet, so that only my toes were sticking out. So essentially, I had my legs in pretty much one position all the time and couldn’t bend them even slightly. I absolutely didn’t realise that it would impact me so much. I think I wasn’t aware that it would change my life in any way beyond just the surgery itself. I often saw people – particularly my Dad – with broken limbs – which was the only comparison with that I could make – and for what I knew, he almost lived on as normal except for using crutches or having his hand in a splint/cast. He didn’t have his limb stuck in one place for weeks, didn’t need rehabilitation or anything, sometimes he’d even go to work or pick me up from school with Mum. I remember that my grandad, before I had the surgery, talked about it to me a little, and he said my legs would be in stagnation for a while. I didn’t know what stagnation was, so he explained to me that if I would spend all the time in one room, without seeing anyone, without ever going out, without being able to read anything, listen to music or radio, watch TV, talk to anyone, I would be in stagnation and that the same thing would be happening to my feet now. I thought that would be super scary if that happened to me, but didn’t really apply the allegory to my feet, or don’t think I did.

But it turned out my grandad had great intuition because, while it wasn’t as radical as what he described, my brain also went into some sort of a stagnation for all that time. As I said, my Mum was busy all the time with Sofi who was very demanding or at the building site of our new house or picking furniture for it etc. and all other people naturally also went on with their lives. I spent most of the time on my own, which I typically find absolutely fabulous, but not really when there isn’t much to do. My only regular company in those weeks was Polish Radio BIS, which I loved and listened to all the time and even called them and stuff. Sometimes Mum would get me talking books on tapes from the nearest library which had it, but I was done with them in no time as there was a limited amount of them you could borrow at once and I could listen to them all the time, while it wasn’t close enough that my Mum with her busy schedule could pop in there any time I wanted it. I had a lot of old children’s magazines in Braille, as well as a Dictionary of Foreign Words and Phrases which I got from a sort of organisation which printed it – I was always fascinated with words and wanted to have my own dictionary and that was the only one my Mum found out about that she could get me. – So I had that to read any time and I did, only I had a whole tall bookshelf of these children’s magazines and another one with all the volumes of the dictionary (Braille books are very clunky in case you don’t know so there are almost always multiple volumes even when it is a novel, let alone with something like a dictionary) and both of these shelves were quite a distance away from my bed. So I had to ask someone to give me something to read and as these things weren’t labelled in standard print, I’d often get the same thing to read multiple times because they’d just pick whatever was nearest randomly. A few times I attempted getting something myself, I slid off the bed and moved to the shelves on my butt so that I could get something specific from the lower shelves, but then I couldn’t make it back up on to the bed as my legs wouldn’t move almost at all and the casts were heavy enough that I couldn’t drag myself up on the arms. Eventually I managed it somehow one time I tried it and can’t remember how but that required a bit of inventiveness, haha, the more that at this time my Dad was back from work napping on my bed so I didn’t want to slog him with my leg accidentally, or with the book, lol. Sometimes Mum would bring Sofi to me and leave her with me but she was very small so that wasn’t often or for long. My class teacher visited me sometimes to help me catch up with what my class was doing, though that was rather rarely and more often when I was already out of the casts.

So I had rather little stimulation in general, not too much contact with people, and as I wasn’t very active either cognitively or physically, my circadian rhythm was crazy in that I slept very little so I often also had to figure out what to do with my stagnating brain at nights. All these things alone can contribute more or less to my sensory anxiety, and together they really made me feel like my nervous system was on fire all the time. My generalised anxiety and other mental health difficulties I was struggling with also got much worse, and I developed lots of weird specific phobias or the ones I already had to some small degree became much more of a problem, I still struggle some of these to a variable degree particularly the emetophobia but it’s much better most of the time. My thinking was generally super weird in a lot of ways, I can’t even describe it. And my imagination was extremely wild, which sometimes was very helpful, and other times very unhelpful. I didn’t have a computer yet, or any other technology really, my Mum had applied for funding for a computer and some specialised equipment for me earlier and it came right at the end of my cast stagnation, but it took a few more months until I had some training on how to use these things. I was suicidal for all sorts of reasons but also because I felt like an extreme burden for my family since they were so busy but also Mum had to help me with showering, and as we didn’t have any wheelchair for the occasion I also needed someone to transport me to the loo which sometimes was tricky when Dad wasn’t at home.

When the time came for me to have the casts taken off, and they actually got them off me, and the doctor who was on duty at the time was talking to my parents about me, I suddenly started crying and couldn’t stop. No one knew what was going on and my Dad was a bit annoyed as he didn’t understand why now that I’m no longer in the cast, I suddenly start crying. And I didn’t knew either but I was just crying and crying and crying like I was going to do this forever. Also now that I didn’t have the casts I realised that my feet were hurting a fair bit whenever I moved them. A few days after that I started rehabilitation and that was really scary too. The first few weeks it hurt like shit, probably not just or not at all as a side effect of the surgery but more because of the muscles in my whole legs not being able to move for so long. He wanted me to do a few squats during our first session already, and I was very surprised how am I going to do a squat if I’m not even able to stand up. It scared me a little but I figured he’s a physiotherapist so he knows what he’s saying, so I stood up rather confidently with his assistance and totally wasn’t ready for all the sharp pain that was coming. So I was very resistant to doing anything with him but I was also scared of the prospect of not being able to walk so I did it anyway and it felt like a torture, and any time I was waiting for him I was shaking like a leaf.

Years later, another orthopaedist said that because that Achilles surgery wasn’t effective, I should have another one called Grice-Green’s. I was still a minor then so I didn’t really have a say, but for some reason it never happened. And as long as I get to decide, it won’t. I don’t know what would have to be going on with my legs for me to have another surgery, someone would really have to give me a very good reason.

But I learned loads of things from that experience! I learned loads new, weird words and useless things. Some of these useless things interested me enough that I developed shorter- or longer-lasting interests in the very narrow fields they were connected to. ๐Ÿ˜€ I learned a lot about myself and the murky side of my brain, and got to test the limits of my imagination. I learned what it feels like to be suicidal. I’ve had depressive tendencies ever since but that was the first time I was actively suicidal. I learned lots of internal strategies to cope with boredom, though still this is one of the things I despise the most, the good thing of it is just that I’m not very easily bored at all thanks to this experience. All these things were very difficult, but also very enriching for my personality and my inner world.

My Dad was falsely accused of abusing me sexually

I still don’t know how exactly that happened. There was a school psychologist I started seeing when I got back to school after I recovered from the surgery. She was weird. Made a very strange impression on me. She had a weird way of talking, both in terms of modulation and the words she used, there was something very serious and pompous about her, and she always seemed very sad and very sad about anything you’d tell her. I’d always loved to make my therapists/psychologists laugh to lighten up the atmosphere when needed, and many of those I dealt with weren’t easy but I always succeeded and quite impressively, except for this one lady, I never heard her laughing not even a little bit. Perhaps also because, just like I said earlier, I myself was in a weird mental place at the time so not as capable of it. Sometimes when a class would behave badly she would come to the whole class and tell them how they should behave well, and one time she came to us – our class mostly consisted of boys and could be rather unruly sometimes. – The incident that she was called for included someone who had jabbed someone else with a pin. And, what stayed with me from that lesson, was how she addressed that person: “It’s not allowed to jab thy neighbour with a pin!” And no, I really don’t think she got “thy neighbour” or her general way of talking and acting directly from reading a lot of the Bible (she didn’t even say “Thou shalt not”), in fact my Mum said that to her she seemed like she had some strong preference for new age related things, which is possible, I was too young to see or not see that myself and that doesn’t matter, it was just funny and portrays her quite well.

Talking to her made me feel quite awkward as she herself would say very little and there was something very depressing about the whole experience. She asked me often about my relationships with my family and seemed to draw not the most favourable conclusions. At some point, I don’t know what led to it, but I was talking to her about how my Dad sometimes plays with me that he is a hamster and my fingers or toes are his food and bites them slightly and how I consider that funny. She didn’t seem to share my feelings about it. Either after this same appointment or the next one, she was also supposed to see my Mum to talk to her about my depression. And at the end of that appointment where she was supposed to see my Mum, she told me what she was going to tell my Mum. And among these things was one thing that made me feel sort of uneasy. She said that she’s going to tell my Mum about my Dad’s “erotic” behaviour towards me. I did very basically know what erotic was, and didn’t think it could have anything to do with my Dad and me. I suppose though I must have been thinking that she knows what she’s talking about and she wants to help me, or maybe after all I didn’t know exactly what the word erotic implied, anyway I said that okay, you can talk to my Mum about all this, and felt very happy that perhaps she’ll be able to help me somehow. Didn’t really know with what exactly, or the more how, but I definitely felt like I needed someone to help me so that was good that she wanted, right? I sat outside of her office as they were talking and I could hear that my Mum was crying and some broken sentences about something sexual, and how my Mum thinks it’s important to have physical contact with a child, especially when the child is blind and you can’t have eye contact or communicate things through body language. Mum cried afterwards too but I don’t think we talked about that much until later when my Dad learned about the accusations. It only sank in with me then, and I talked about that to Mum and told her that I didn’t say anything about such things, or nothing that I’d realise would be about it. I felt awfully guilty and sorry for Dad and couldn’t really understand the situation and how it happened. I still can’t fully. My Dad was mad and so I didn’t even talk much to him at the time but he wasn’t mad at me, only at the psychologist and the school. I apologised to him and things went back to normal.

One day during summer holidays I was at my grandma’s, when Mum came and called me to come quickly back home. When I came, there was some lawyer lady – I don’t know now what exactly her function was – who wanted to go into my room and chat with me. She asked me weird questions about my family and my Dad that seemed totally stupid to me and that I felt quite uncomfortable with – most of them weren’t even sexual I guess but just general about my home, but I can’t give you any examples. – Then she asked about me, how I was doing, if I was often sad or thought about death etc. I was all like: “Why???” I kept asking her directly why, but she wouldn’t say anything specific until finally she started asking me about some sexual things and Dad and then I had a lightbulb moment and remembered the situation with the psychologist. “Aha! Now I know why you came here!” So obviously I told her that no, my Dad is not an incestophile – well that wasn’t probably what I said but I got really quite mad – and told her a bit about my Dad and what he is and what he’s most certainly not. But then it turned out it wasn’t just that! Apparently, a girl I was closest with in the class – not really because I liked her so much but because as I joined this class she was the only other girl and was also visually impaired to a degree so she was most willing to help me get around, as she both was able to do it with the sight she had and could understand my situatioon better than the rest who were able-bodied. – I can’t say though that we got along well and I mostly hung out with her sort of out of duty and gratitude that she’s willing to help. But we didn’t have any common interests and clashed in terms of characters a lot. And I don’t know exactly what was the deal with her, were they asking her about an opinion on me, whether she saw something weird or what, anyway she apparently said to a teacher or someone else in school that I told her that I am going to hang myself! Really… If I wanted to kill myself I most definitely wouldn’t go this route. And I don’t think she’d be the first to know, haha. So I also gave the lawyer lady a piece of my mind about that (I wasn’t mad at her, obviously, but at the situation) and let her in on how I generally saw the situation between me and that girl. She seemed quite relieved and actually became more human after I told her that (I’m sorry to all the actual sexual abuse victims if it’s always the case with people who interview them that they appear so unfeeling and detached and difficult to connect to) and apologised for the fuss and made sure that I understood her motives which I did. Good thing that she actually decided to mention that to me, I’m curious how it would go otherwise.

The thing eventually ended well although I had to go to a psychological assessment or something and another psychologist was supposed to judge based on my behaviour whether my Dad was a paedophile, or maybe not.

Is there a lot to learn from such an experience? I know I learned one thing which is not really very good, or at least it’s not good that I had to learn it but the goodness or badness of the thing itself probably depends on the context, namely I learned not to trust therapists easily and be really, really, extremely careful of whatever I tell them, if it’s anything of significant importance, and make sure that they understood exactly what I wanted to say. That means therapy was generally a bumpy road for me because therapists want you to be spontaneous.

ย ย  I was treated “like a piece of furniture” by the superior of the boarding school

And bless her for that, because otherwise I might have been in there still, or gone totally bonkers if I haven’t already. ๐Ÿ˜€ The inventive “piece of furniture” analogy is my Mum’s, I just didn’t know how to put it in short. The whole thing is even more complicated than the incest drama and very specific to the environment it took place in – not in that such stories happen there frequently (I hope) but in terms of dynamics and the way it all happened – so I’ll spare you the whole picture and just say that whenn I was 17, the superior sister (this place was founded and at least partly led by nuns) decided a major change about what would be going to happenn to me, without taking anyone’s opinion on that into account. The thing was of huge significance for me, as, from what you already know, I struggled there already without major changes like that, and a lot of people actually did try to speak up on my behalf and tell her it wasn’t the best idea. But she knew what was good for me better than me, my Mum, the group staff or I suppose anyone else, despite working in there for only a year and having to do with me perhaps once or twice for longer than 5 minutes, and she was going to do that no matter what. After some time, she decided that, actually, no, she won’t. So I breathed a half-hearted sigh of relief – as there were already other major changes coming for the next school year, but at least the biggest one and such that was affecting me personally was a thing of the past. – Then in the end it turned out not to be so because sister changed her mind yet again, a day before the start of the school year, and decided that after all she does think that that change would be the best for me. My Mum, and one staff member who worked with me for many years and knew me well still tried to talk her out of it and my Mum kindly didn’t even let me know about the whole comotion, thinking that I’m probably feeling sick about school already anyway and hoping that they will be able to talk her out of it so I won’t need to know about that. Well this time she didn’t change her mind, so my Mum had to tell me about it. I honestly said I really couldn’t imagine how I was going to deal in there, entirely practically. It was also a time where I perhaps wasn’t as neurotic as I was in the integration school but felt very depressed and the thing was just totally beyond me, I didn’t know how I was supposed to cope, also with other things on top of it. Actually, as time went on, over the years rather than feeling more part of that place I felt more and more weary of all that and like I had less and less energy for coping. I had a brief period of intense escapism into all things esoteric, because I felt very lost and pretended I was an atheist or Wiccan or something, I didn’t even know what. I did lucid dreaming and out of body experiences whenever I could and used the kind of binaural sounds that can work like drugs. That all helped me going, but then I re-converted to Christianity with the guidance and help of my Mum and some other events that occurred and helped me come to this, and while that made me feel more of a purpose in my life, I wasn’t mature in my faith enough to use it like I did those other things, to help me cope in any way. Also my fazas were of some help, but generally I felt gradually more and more like I was slowly, lethargically sinking.

We talked and talked about that with Mum but nothing was coming out of it. My Dad came in to the kitchen and we filled him in and he was all indignant but didn’t see any other option than that I’ll have to carry on with that. My Mum said it’s not an option. My grandad happened to visit and we filled him in, he was raging and said it’s time for me to leave that place or else I’ll go mad and that he’d rather have me sane than academically accomplished. Which was a huge thing for such an intellectual like him to say but he always stands by me and sometimes I think that whatever I’d decide to do, even if it was a mass shooting, he’d say that I absolutely should do it if I want and that he also thinks it’s a good idea. ๐Ÿ˜€ But if you have only one person like this in your life, it’s not yet very harmful, I think it’s actually highly recommended as long as you have other, more critically thinking people around you and some reasoning skills of your own. He couldn’t do anything, but he hugged me and from his words and presence I felt the confidence that things can get better and that perhaps indeed I don’t have to, or shouldn’t even, go there.

So my Mum started looking for a different school for me which was obviously a trick, but in the end one was found, but I wrote about this fascinating situation many times before. The point is that, thanks to that sister, I got my sanity back! In a way, I’d like her to know that and sometimes I regret I didn’t send her some thank you letter or something. But I try to remember to pray for her. Another thing that we regret even more, is that we didn’t notify the headmistress about the event, about why exactly I left, so that no one else would have a similar situation, which they may be not as intolerant to as I was or not have parents who would take such strong action, but it’s still something that absolutely shouldn’t happen. Making decisions about your subjects may be a common practice in religious orders, but we were not nuns in training.

I learned from it that even the most awful, scary, enraging things can lead to the most fabulous things that you wouldn’t expect. Perhaps not always immediately, and you have to go through some things first but sometimes it really does happen. And that sometimes situations where someone wants to be malicious can grotesquely turn around.

ย ย  My friend, Jacek from Helsinki, passed away

You all regular readers know about Jacek. He was a good friend of mine that I met online shortly after leaving the school and had a lot in common with in that we both loved Cornelis Vreeswijk, learned Swedish, loved Finnish, vikings, all things Norse and had some Gothic tendencies – Gothic as in referring to the subculture, not the historical Goths. – He was actually Jacek from Poland, but a large part of the time when we knew each other he spent studying in Helsinki. He was also not the easiest person to interact with and there was a lot of clashing, he was a very strong character just as quirky as me but in his own unique way. He introduced me to so many new, fascinating things and had his own part in pulling me out of the black reactive hole I was in still at the time when I first met him. We made lots of happy, strange and funny memories together. But after a few years since our friendship started Jacek was diagnosed with a malignant bone cancer and a few months after that he progressed quite rapidly and passed away. It was a huge shock for everyone who knew him and I only recently realised that I didn’t process it fully. I was just in such deep denial of his death, it didn’t even fully register. Yes, I knew he was death but still couldn’t believe it, until earlier this year, and that was hard. He was so lively, fiery and spontaneous it felt like some physical law was broken when he died. But now it sort of makes sense that someone with such a huge personality wouldn’t live long, there can’t be too many suchh people on Earth at once, they wouldn’t fit.

His death taught me a very cliche thing that I knew but only then truly realised, because such a thing had never happened to me before – that yes, even people I am close to, they also die. – And it taught me even more about the importance of praying for the purgatory souls and how satisfying it can feel in making you feel useful for them.

I failed my maths final exam

I wrote about it quite recently so I won’t be going into much detail as you may know about it already. I was studying for it a lot, but knew from the beginning that I just may not pass it because I’ve always had huge difficulties with maths on a lot of levels. This wasn’t a big deal for me as I didn’t know what to do with my future yet anyway and I told everyone in my surroundings that I thought should know that in case I fail it, I won’t be trying to rewrite it until I clearly see the need for passing all my finals because I will want to do something that will require it and I will know what this something is. I failed indeed and quite spectacularly, which was sad but as I knew it could happen, I didn’t dwell much on it and as my score was so low, I was even more confident about doing, or not doing, what I intended. Turned out though that my family were less accepting about my decision than they seemed at first. They got over it quickly though, so that’s good, as while I was convinced I was not going to change my mind I don’t like when people feel bad because of me and it wouldn’t be fun to live in a conflict over such a thing for too long. I still haven’t passed it. Sometimes it contributes to making me feel like a failure but ultimately I try not to think to much about this.

It taught me that you doon’t always have to have a schematic life to have a good life. You don’t need a piece of paper to prove a skill you have if you can do something well. That’s something my Swedish teacher always said to me, as he knew I may not end up having a PHD. in linguistics or whatever else someone may have expected. And yeah, screw the education system. ๐Ÿ˜›

So that is, my lovely people, the conclusion of this very lengthy post! Well no, I’m just kidding a bit, I hope you don’t have a reason to agree with me and have only positive associations with your formal education. ๐Ÿ™‚

If you feel like this post needs a conclusion – which I guess I do after writing so much just about myself – let it be that it all really proves how our brains are extremely plastic – we’re learning something all the time, even from going crazy. –

And now, sleepy time for me, and in the meantime you tell me: how about your challenges, and in what ways did they improve the plasticity of your brain? How did they enrich you? I’m very curious. ๐Ÿ™‚

Question of the day.

What was the first adult book you ever read? How old were you? Did you ever read YA when you were age appropriate, or did you jump from children’s books to adult books?

My answer:

I was thinking hard about it and it took me really a long time. Probably both because I read a lot, and I don’t really have memory for such details like which book was first and when exactly, I’ll typically remember the plot line of the book, or other things that happened around the time when I read it, what was going on in my life, what were my reactions to/associations with the book etc. But actually when I thought hard enough I figured the answer was much easier than I thought, because one of the first books I read was a proper, very adult, very difficult book. And I’m pretty sure I’ve even written about it on here not that very long ago. I just got signed into the school library and was reading my first, short children’s books, but they weren’t particularly interesting and too short for me to be enough between the times when I was able to go to the library. So I wanted to try something longer and something that I knew I’d actually like, and asked about brothers’ Grim fairytales. I got a huge book, but, to sum it up, because as I said I wrote about it earlier in more detail, there was a mistake and the book I got was nothing like brothers Grim’s fairytales! And the funny thing was that, despite as I read on and couldn’t get myself at all engaged into the oh so boring, dull plotline, and it wasn’t at all like the brothers Grim book my Mum had read to me, no alarm went off in my brain that, uh oh, perhaps I’ve got the wrong book. I thought perhaps it was some really long introduction (though why it was completely off topic I had no idea either). Finally, a young girl who was volunteering in our boarding school group at the time once came over to me and asked just out of curiosity what I was reading. I complained to her that I got brothers Grim from the library but it’s so much more boring than when my Mum read it to me and actually seems like a whole different book, and there’s a lot about animals. She wanted to have a look at the cover and we were both surprised to realise that it was actually some very fancy book about… white lions? if I remember correctly, something like that. Super geeky! I was still very much learning what the whole literature thing was about and how to deal with books, and while I could read the title page myself and did, it must have probably been too disorientating for me yet. I don’t think I’d be into something like that even nowadays, although I’m sure I wouldn’t keep on reading it for as long as I did, it wasn’t really very much like me, I generally get discouraged with books quickly and give up on them ’cause why read something that’s not particularly interesting if there are so many more interesting books out there, I hate being bored.

Anyway, I must have been about 7-8 at the time it happened.

As for adult book in the context of a book containing so called adult content, when I was maybe a preteen, I was a member of our local talking book library. I loved to read and I would happily to it all the time but I could hardly have enough Braille books at home even with all the different sources I got them from, so mostly I listened to talking books on tapes. The library ladies liked me very much and were very nice, but I don’t think they really knew themselves what they had in their library, what the books were about and what ages they were appropriate for. Because I got lots of books from them that, even though I was quite a smart kid, were often for one reason or another not really appropriate for my age either intellectually or emotionally, in hintsight. That particular “adult” book was about a 15-year-old girl, so actually it could probably classify as YA only it did have a lot of sexual scenes that I absolutely wasn’t ready for then, and found all of that quite shocking, together with that the protagonist’s family was very much pathological, and she herself had a sort of lifestyle that I didn’t realise a 15-year-old could live. I think I did knew the basics about the birds and bees by the time, but not much beyond that, and it was just something very new and very overwhelming to me. I don’t think there was anything pervert or anything like that, just very graphic and the whole book overall had a sort of rough feel to it the way I remember it which made it feel even more overwhelming. In a way though, this new world was even quite fascinating. But I felt very much disturbed and after some time I talked about all that with Mum, and she reassured me, explained some things to me that were in this book and that I was wondering about, and said that if I didn’t feel like reading it further, I didn’t have to, and so I left it. I don’t remember the title of it now, I only have a vague recollection that it was German but I’m not even sure of that.

And as for YA, oh of course I read it! A lot! Since quite an early age, and enjoyed it a lot. Moreover, I still do and read a lot of it.

How about you? ๐Ÿ™‚

I can deal with it.

I thought that I’d write another prompt-inspired, or at least partly inspired, post today. It’ll probably be long, so get yourself something yummy to drink and a snack and brace yourself.

The prompt I chose comes from one of my two books of journaling prompts – The Goddess Journaling Workbook by Beatrice Minerva Linden, and goes as follows:

“I can deal with it. You can. (…) Think about something which overwhelms you and imagine your life when that issue is resolved.”

I thought I’d twist it a little, or maybe a lot. Instead of writing about something currently overwhelming, I am going to write about something the perspective of which was always incredibly overwhelming for me, and I never thought I could deal with it, but, as it seems, better or worse, I can.

This thing is using my iPhone. As those of you who know me well or are regular readers know, I’d been loyal to my good old Nokia with Symbian OS for over 10 years, and I don’t even mean Nokia as a brand but one particular Nokia phone that I wasn’t changing as there was just no need for it. It was my first phone that I ever got and the only one until June this year. It was possible because, while in the past, my Nokia was through all sorts of things with me and survived a lot, in the last five years I used it very little. The people I usually text or call are my family, and now that I live with them there was little need for me to text or call them, and as I hate phone calls and always have the computer or Braille-Sense with me, I was always telling people that it’s easiest and fastest to reach me via email anyway. So it had very tranquil and idyllic retirement years with very little to do. I always joked that I stick to it because of my undying love for Finland (as Nokia is from Finland). But in fact I simply felt like, since Symbian had died, I had few alternatives.

As many of you also may know, the reason why I didn’t have a smartphone unlike a lot of blind people do now was that I had rather poor experience with touch screens when playing around with phones of other people, whether Androids or iPhones, they seemed extremely abstractive to me as I have poor spatial orientation and a coompletely flat surface doesn’t help you feel more oriented, and my coordination/fine motor skills are also a challenge – it’s generally a very mild and apparently not even diagnoseable problem, yet at the same time challenging enough that it affects my functioning in some ways and is evident for those who know me closely in real life. At the same time I had a terrifying feeling, that after all, at some point my Nokia will eventually die, and I felt clueless what I’ll do then. I contemplated buying another, used Nokia online, the same model as mine, or perhaps, what I would truly hate to do, get myself one of a few smartphones that have been developed with the blind (especially older blind people in mind). Why was it such an awful thought for me? Well, because the target market of these products is pretty small, they’re very expensive compared to their actual abilities and specs. They’re Android phones and run some pretty outdated Android versions, have very few capacities so you can barely call it a smartphone really, can be very sluggish, but they do have a physical keyboard and typically come with a screenreader onboard and running from the start, as far as I know. Apart from the physical keyboard, such a thing wasn’t really what I’d need. If I have to have a smartphone, I’d rather have it actually smart rather than just pretending to be smart and cost more than an averagely smart phone. I also contemplated on and off purchasing the dreaded iPhone and just using it to an extend that it would be possible for me. Which still felt far from satisfying because I didn’t feel like I’d be able to do more with it and iPhones are not the cheapest, and I’d probably be a little frustrated having a premium phone and not really being able to use its full potential, just because there wasn’t a better alternative for me. Yes, I’d of course heard that you can use iPhone with a Bluetooth keyboard, but I’d also thought somehow that the things you can do with it this way are limited quite a lot. But at least, I figured, I could learn iPhone better than I could Android phone, as I’ve heard about a lot of blind people who were less tech savvy or perhaps had some coordination issues like me or other motor problems, and were scared of the big wild world of smartphones and it took them a lot of time to make the transition, and found it easier to find their way around iOS rather than Android as it’s more accessible and kind of friendlier for this group of people.

So I was happy while my Nokia was still alive and clinging to it for dear life and praying that it would last for as long as possible, as I couldn’t make up my mind for years and felt mortified of the after-Nokia life. Deep down I knew I should change my phone or at least attempt to change it already while Nokia was still alive so I could see if it’s actually doable for me or should I better stick to archaic Symbian phones but I couldn’t get over my anxiety and doubts and thus had no motivation.

Despite that, it wasn’t my trusty Nokia’s death which finally prompted me to make a decision, which was good as otherwise it would probably be a little traumatising. I can’t really pinpoint what exactly it was, perhaps I just matured enough and ruminated it through thoroughly enough to be ready to make the big jump, or, which I personally think is more likely, it was a combination of different things.

My Nokia was visibly (or rather audibly) doing much worse, or to be more exact it wasn’t really the Nokia itself but its charger deteriorating. Whenever I plugged it in, it constantly emitted a high-pitched, ultrasound but nevertheless audible peep, just like a lot of obsolete chargers do. It was annoying but, worse still, it wasn’t even me who was most annoyed by it, but Misha! What better motivation for me to change my phone than have Misha tell me that he doesn’t like it! ๐Ÿ˜€ Very unfortunately, the power strip with the charger was right next to my bed, and on its – the strip’s – other side was Misha’s snack bowl, so whenever he had a snack, or slept in my room (his bed is up on my bed) and I happened to have the charger plugged in, he was clearly upset or even avoided coming near, and it took some time to figure out what was the problem. Well I’m still not perfectly sure, he didn’t tell me, but he always calmed down a bit when I switched it off and after I ditched the charger the problem magically disappeared so…

All the cool kids in Sofi’s class have iPhones. Sofi doesn’t aspire to be cool, I mean she already is in a way but doesn’t meet all the requirements, the key one being that the cool kids don’t really like her and are jealous of something about her, I guess it must be her confidence and perhaps that she’s so tall and has her own fashion style, but nevertheless the appeal of iPhone was huge for her. So last school year my parents prommised her that if she’ll have a certificate with honours, they’ll buy her an iPhone. She didn’t really, because there was lockdown and she had remote schooling and she didn’t do really well with this grade-wise, but she said that she sort of did and my parents didn’t double check, and bought her an iPhone, although a used (very heavily, as it seems) one and not in the best condition (so typical of my Dad ๐Ÿ˜› ).

Sofi kindly let me play around with her phone and VoiceOver (the built-in screen-reader in most Apple products) a lot, and I asked her tons of questions while she was also figuring out how to use it so I could get a better idea what it’s like, though Sofi wasn’t really particularly knowledgeable or exhaustive at answering my questions nor was she a good teacher. The whole idea was scaring me big time but at the same time I was feeling more and more like I’d actually like to try it out for myself and have my own iPhone, at least for a while, to see how much I can get out of it, how much I could achieve.

Finally, some time later I read about the new iPhone SE and that it has a physical Home button, unlike most other newer models, and read a review of it written by a blind guy who actually has… er… apraxia? (I guess, or something similar) and so definitely has coordination and motor difficulties bigger than mine. He seemed a long-time iPhone user and really liked the new SE, and that made me think. ‘Cause if he has apraxia and can deal with it, why can’t I? I mean, yeah, it’s possible that I can’t, because even if my difficulties are milder than his we’re still different people and there may be things that I find more difficult than he does or just differently difficult, but isn’t it a huge miss not to try it if blind people with apraxia do? I would probably regret it my whole life if I didn’t, especially that for most blind smartphone users, their smartphones are more than just devices for communication and such but also help make things easier in daily life, like recognising bar codes, to give you an example off the top of my brain, or doing other things that otherwise may be only doable with some fancy specialised devices.

So, all jittery, on 12th June I went to the nearest Apple store and got an iPhone with all the necessary accessories plus a Logitech Bluetooth keyboard.

It was all very different than what I imagined it to be.

My Mum helped me set it up even though she didn’t have an iPhone in her hand for longer than a few seconds ever before, and it all went well. I remember my cousin was staying for the weekend at Sofi’s and I had a proper cheerleader team consisting of Mum, Sofi and Dominika – my cousin – supporting me morally and helping practically as I tried to familiarise myself with iPhoneland. The first few days were so hectic and all over the place and it was all so abstractive, but, and it was very much an uphill struggle all the time but at the same time a very rewarding one and I never had weird problems like you sometimes do when acquainting yourself with a new device/technology that something is not working and you have no clue why, whether it’s your ignorance or the thing itself being so buggy or glitchy. Here the only things that went wrong were only down to me not knowing something which made things less stressful and easier.

I hate any major changes and typically don’t deal well with them, and to add to it I had a fresh but really nerve-wracking experience of transitioning computers earlier this year – and that’s only a Windows 7 laptop to a Windows 10 desktop, and it was harrowing! I may be not a tech geek but I’m also not totally clueless, but found it difficult to adapt probably because the whole process was very much over-extended and there were a lot of major glitches and other stressful stuff going on with this new computer thing.

The leap from Nokia to iPhone felt much more intimidating, and the change in terms of how my whole life could change due to this felt infinitely more significant, and so I expected being just the same bundle of nerves this time, especially that the level of difficulty of this challenge was waaay higher, but perhaps because there weren’t any major problems that would be beyond my control, and I didn’t feel pressured that I needed to learn it quickly, I wasn’t a bundle of nerves. Yes, I was anxious, I couldn’t sleep, I bit my nails raw as I always do when things are a-changin’, but the dominating feeling I had was some sort of healthy excitement, rather than pure freak out mode which is typical of me with huge changes. What surely helped me was that, as I said, I didn’t feel the pressure. I told myself that there’s no rush with it and if I decide that iPhone is not for me, it’s okay, I can sell it, I can give it to Sofi, I can throw it in the loo, I don’t have to feel obliged to anything, no oone can make me like or use it other than myself. I gave myself a month for at least the initial figuring out whether it’s worth exploring further or whether I want to give up on it. Already after a week or so, even though I was still struggling a lot with learning to use it, I was sure that I was not going to sell it and that I’ll stick to it, even if my usage of it will be limited by my limitations. I quickly grew to like it, probably largely because it provided me with the possibility of finally being able to listen to my music at night on something else than my loudly humming computer and because learning new things about it was (and continues to be) quite rewarding.

My Mum helped me a lot in the first days and then later with various tests and experiments I was undertaking, as did Sofi (I really don’t think it’d go as smoothly as it did if I didn’t have Sofi nearby to consult with sometimes).

I struggled, and still do, with some gestures. Actually, to an extend, I struggle with all gestures, even basic flicking/swiping and can get lost on the screen, which can be frustrating, but not hugely because I use a physical keyboard most of the time anyway, and even if I don’t, with more basic activities it’s usually somehow manageable and I do try to use my iPhone just via the touch screen and not run for a keyboard in every single situation when I don’t have it at hand and I need to do something on my phone, or for Mummy when something is not doable from the keyboard, although it does take me significantly more time than with the keyboard, and even with the keyboard I still do things way faster on the computer so I don’t have the experience of many people that it’s more convenient and faster to do things on the phone, it’s just totally the opposite for me. Longer writing/editing is the prime example. I mean from the on-screen keyboard it’s a torture but I don’t really know why it’s such a pain in the brain for me to do it from keyboard, but it’s really a lot of hassle and a good patience training.

But I consider myself a fairly efficient iPhone user by now nevertheless, perhaps not necessarily advanced but I do know where everything is in it, how to use things properly, how it works in theory, dare I say better than some sighted users I know, what all the settings do and how to change them, how all gestures work in theory, how to do everything with VoiceOver etc. etc. Though it’s not a huge achievement in itself because, apart from learning the touchscreen for me, the system itself is very intuitive in my experience. A huge help and source of knowledge in this for me was AppleVis, which is a website with all sorts of information on accessibility of Apple products for visually impaired users.

One of the more difficult things for me at the beginning was the so called rotor in VoiceOver (this is a feature that makes it possible to change different settings of VoiceOver), and it seems like I wasn’t alone with it at all. To move between different rotor settings you have to move both your hands in a clockwise or counter-clockwise motion, people often explain it that it’s like turning a door knob. It felt very abstractive to me at first, then it made sense to my brain and imagination, but my hands responded with: “What the flip are you saying?!” I just couldn’t make it happen in the outside world for the life of me! But then I learned that you can change the gesture for rotor and that saved me. These days I can sort of make it with the original gesture but it’s too much thinking and trouble for me to put up with for such a vital thing because I do use the rotor a lot.

And I had to change a lot of other things as well to be more suitable for me because of what is not really doable for me and am so glad that these things actually are changeable.

My Mum says that she’s never seen it with me that I’d change my mind on something so radically in such a short time because from someone who thought smartphones are evil I suddenly magically changed into someone who claims that iPhones are the best and who likes Apple (even though I am not planning to equip myself with other Apple products any time soon but, as you can see from this post, you never know, right?…)

Despite I do have more or less touch screen trouble all the time, I use my iPhone extensively now, the more that I have set it up with my Braille-Sense, so these days more often than using the Logitech Bluetooth keyboard I use Braille-Sense to navigate on the screen and also to read what’s on the screen as I prefer to read things myself a lot of the time. And it’s easier to use it with the Braille-Sense as a physical keyboard. I only take the Logitech with me if I’m going out somewhere and really need keyboard because it’s very slim, dust-proof and not as valuable and flimsy as Braille-Sense.

I have got myself a great speaker and headphones just for the iPhone so that I can enjoy my music, especially overnight, even more. I have created Family Cloud for myself and Sofi, because my Mum is very wary of Sofi using the Internet and wants her to be safe and not overdose on screentime, and this is the only way which she agreed for Sofi to have any access to the Internet in her phone at all, so I monitor her screentime usage and do the bad guy job but also the good guy because otherwise she couldn’t really do much with her phone except for calling and texting.

I feel like I may need to start cutting down on my own iPhone screentime soon because I’ve become totally addicted to a game called BitLife lately (if you’ve ever played Alter Ego it’s something similar only more extensive and detailed). ๐Ÿ˜€ Just like Sofi is addicted to Brawl Stars.

So yeah, to sum up this elaborate post, my experience has shown that I can deal with it! And I feel really happy about it. I think I can even say proud and it won’t be a very big overstatement. I feel so especially because, except for the help of my Mum and Sofi’s, and referring a lot to AppleVis, I didn’t have any more external help, I mean, a lot of blind people have some training. I didn’t have that, and still, I figured it out. Perhaps if I did have someone who would come to me and show me things I could be better at it, but somehow I feel really sceptical.

Did I imagine that it could be this way if I managed to overcome the whole overwhelming touch screen hurdle? To a degree, yes. I knew that if I could make friends with iPhone it could potentially change my life in a good way and be very enriching. But I guess I didn’t imagine that it could be such a big change.

What’s something that you find very overwhelming and difficult to deal with, and how do you imagine your life if you could get rid of the problem? Or what was such a thing for you, and why/how did things change so that you now know you can deal with it? ๐Ÿ™‚

Question of the day (17th September).

Hi people! ๐Ÿ™‚

Have you ever had couscous, or do you like it?

My answer:

Yes, I have had it. But let me give you a bit of a backstory first as I guess it might be interesting. The first time I had couscous was around the time when I started primary or perhaps during nursery yet. I had an aunt back then, who wasn’t my real, biological aunt, but I always called her aunt anyway and will always think of her as such. And whenever I think about couscous, I immediately think of her. ๐Ÿ˜€ She lived very close to my boarding school, and at some point during nursery, when my Mum realised that I was struggling there and wanted to do something about it, she was looking for a flat or a room to rent there so that she could be closer to me and so that we could live there at least temporarily and some of the time during the year. The prices were really high though in that part of the country and there weren’t that many satisfying offers anyway, and so finally during her search my Mum phoned just another real estate agent, who didn’t have anything to offer for her but felt really moved by our situation as it seemed and offered that, since she lived so close to the boarding school, she could be like my aunt and visit me or I could visit her and perhaps having someone like this would make things easier for me even though it wouldn’t be my actual family. Mum was euphoric, though I remember being rather skeptical about the idea. But it actually turned out to be a great thing, we got along very easily and I grew very attached to her. It wasn’t quite like as if I lived with my family and it didn’t resolve all the problems, but it did make things easier. I absolutely adored spending time in her house which was very different from my ownn or from any houses I had been to so far. I visited her on weekends or we went out somewhere. When my Mum couldn’t be at stuff like different contests, Nativity plays or other such that I might have taken part in, she would often come and cheer me, despite she neither had to nor actually should as she was chronically ill and had something with her immune system so it was a bit risky. When my Mum came to me for the weekend or longer rather than took me home, she let us stay at her home upstairs so we didn’t have to continuously spend the time in the boarding school. She was extremely altruistic, to the point that you could consider it foolish or extremely naive. My family and her had a lot in common, though also at the same time she was very different from them which attracted me all the more to her, and also we both shared a passion for figurines, which I collected at the time, mostly porcelain figurines, and so did she, and we exchanged a lot of our figurines. Sadly though, this relationship didn’t last too long, because over time she felt worse and worse physically and had a lot of familial problems, so couldn’t see me as regularly as she used to, and finally, some two years or so since we first met, she moved out with her daughter to the city. I tried to keep in touch with her and called her infrequently but regularly when I was at home and could do it, as I felt very grateful for what she did to me and knew she was struggling with a lot of things and of course my family also encouraged me to show my gratitude towards her, and she continued to have more and more health issues of her own and also her two granddaughters were very ill. And then at some point we lost touch. Both me and Mum tried to find her, as it seemed like she changed her phone number, and we both wanted to show her our gratitude and perhaps help if possible, but from what we could find out it seemed like she might just as well have moved out somewhere else and we were unable to trace her. So it’s been very many years since we’ve last heard from her and this sucks a lot, as I’d like her to know how very helpful she had been to me, and I’d like to be able to reciprocate somehow. Since she was in her early fifties when we were in touch and as I said she was already struggling a lot with her health, I’m not even sure if she’s still alive.

Anyway, she was also a real foodie and quite sophisticated in general and, during my stays at hers, I got to try a lot of things that were totally new to me. Like the couscous, for example.

Interestingly, I found it absolutely delicious and I was a real fan of couscous. But when, years later, I asked my Mum to make it and she did, somehow it wasn’t quite as good, and my Mum found it even more unpleasant. My Mum is a fab cook and often makes various grains so I wonder was it just that it wasn’t so new and exciting anymore, or did my aunt make it in some special way that made it have a bit more character or have I just grown out of couscousmania. Whatever the reason, these days I find couscous incredibly bland, and so does everyone else here, so we don’t really eat it in our house. Perhaps we’re just not classy enough hahaha. I know that, because it’s so neutral, you can combine it with a lot of things, but either we haven’t combined it with the right things or it’s just not our thing because no matter the additions, spices and stuff the couscous itself always feels bland.

How about you? ๐Ÿ™‚

Question of the day. And a bit about the sensory anxiety thing.

Hi people! ๐Ÿ™‚

What was the last thing you got excited about?

My answer:

An iPhone app I discovered recently. It seems to be primarily geared at people who need noise cancelling in noisy environments, or people who just very generally need some sound background for meditation or relaxation or focus, and I played around with it mostly just out of curiosity because I’ve heard good things about it and thought, why not, I could do with a pleasant relaxation app. Only it turned out that it is possible that it could do much more for me, potentially. I’ll have to check it out in a true crisis situation but it’s promising. What I mean is that, when you purchase the app, you get access to a lot of different soundscapes or sound generators, which clearly aren’t just looped sounds, you can also calibrate the app so that it best suits your hearing range and your needs, and you can play around with these sounds and pretty much create your own mixes of friendly sounds in there.

Now if you know me you probably suspect where I’m heading with this. I gave it a long try, and was really pleasantly impressed with its capabilities and also with the pretty wide range of sounds, and I thought that, potentially, it could be a good tool in my tool box for dealing with sensory anxiety…

Okay, but most of you still don’t have a clue or almost no clue what this sensory anxiety is…

So, very spontaneously for me, I’ve just decided that I’m going to tell you a bit more in this post about sensory anxiety and how I experience it. It still most likely won’t be an exhaustive description and I am not aiming for it to be too long as its part of the question of the day post, though we’ll see, but I feel like I’m ready to try to write about it a bit more, so that you know what I’m talking about when saying sensory anxiety, and just in case someone may ever read this post who is struggling with the same thing so that they know they’re not alone. It’s just such a tough topic to describe, a totally sick thing and quite risky and emotionally weighty, but I have Misha so let’s hope I can do this). For those of you who are very new here and have never seen any of my posts where I mentioned this, very basically, sensory anxiety is how I call collectively a few different things I deal with on a regular basis, which include a fear of silence which can have a different degree depending on a situation (I do love silence but at the same time it can be awfully scary in the wrong circumstances), and anxiety and general discomfort triggered by specific sounds, groups of sounds, harmonies or even words, or sometimes specific sounds in specific situations, as well as these triggery and scary sounds then literally getting stuck in my brain after I hear them and popping up in an intrusive way. It’s like a brainworm, and I know I’m only hearing it in my brain, but I have very little control over it, and it feels very real and overwhelming.

From what I’ve observed talking to other people, also people who have perfect pitch and such and so know more about sound than I do, and analysing these things for myself over the years, there doesn’t seem to be any specific objective pattern recognisable for another person, between the things that are scary for me. But for me there are quite a few very clear ones, which are impossible to describe in words. These sounds most definitely have things in common.

When I hear such a triggering sound in my surroundings, my typical reaction is freeze. As a little kid I used to shriek, and sometimes when it feels particularly scary I feel a sort of fainting feeling and have collapsed a few times when I was hearing something scary while I was standing.

Sensory anxiety is by no means any professional term or anything, I’ve no idea if things like these have any particular professional term. ๐Ÿ˜€ It’s just how I call it so that I have a way to refer to it, in English. People have told me it’s anything from sensory deprivation, hypersensitive/immature nervous system, a form of blindism (blindisms are typically repetitive movements in children who are blind and this is their way of compensating for the lack of sight, providing themselves some additional stimulation, most commonly they are things like eye poking or rubbing, spinning around or just head spinning, rocking, hand flapping, kinda like stimming in neurodiverse people but a bit different genesis, anyway the person who told me that claims that there may be other types of things classified as blindisms, which seems to make some sense because why would it be only movement used as compensation, but I’ve never heard about that from anyone else nor found any resources about it), a kind of sensory overload like there is in autism, prodromal stage of psychosis (that was my last therapist’s theory, the one who was so crazy about my blindness, I wonder when I’ll finally go on to full-blown psychosis, I’m no psychiatrist but 23 years feels like a super lengthy time for psychosis to still be developing ๐Ÿ˜€ it’ll have to be something totally unusually monstrous once it’ll become full-blown!), some other kind of hallucinations, sensory processing disorder,, weird electrical activity in the brain triggered by auditory stimuli, just a part of generalised anxiety, to I don’t remember what else. A lot of these things make sense but I don’t have a clear answer. I have met some young blind children with similar stuff or people who had something more or less similar as little children but they’ve all grown out of it. My Mum says that maybe I still will too, and I hope so, but from what I’ve seen and heard it’s usually around early school age or even earlier when people get rid of it. It’s also possible that there are a few different things at play here rather than just one.

I’ve also met one guy (also blind) who once showed me some of his favourite music, and at some point he told me that he’s going to send me a few other tracks, and that they are going to be very “energetic”. The way he said it felt very meaningful for some reason. I didn’t say anythiing to that so he continued that by energetic he doesn’t mean dynamic, or happy, in fact a few of them are going to be the opposite, but that there are very interesting harmonies in them, and that it makes them feel very strange to him, both in a very good and in a bad way. And when he has this sort of feeling when listening to music he calls it “energetic”. And… whoa!!! the effect was spectacular for me! My brain did become so “energised” that I couldn’t sleep all night. ๐Ÿ˜€ His “energetic” music, just seems to work on me. And, weirdly, I do feel like the word energetic describes the thing in an incredibly accurate, and somehow eerie, way. This “energetic” music is only one kind of music or type of sound that my brain is allergic to, but that felt very interesting to meet someone thinking so similarly, even though he didn’t seem to react with anxiety to the “energetic” music and it seemed to be mostly a very positive thing for him. I can also agree with him that these “energetic” sounds can sometimes be very enjoyable because of how interesting they sound, but for me the line between something “energetic” being interesting and scary is very thin and it has often happened that I was quite enjoying listening to something and at some point it became too much to handle. There is some weird way in which it can attract you, though. And there have been, very few, but still, such incidents where some music I reacted very strongly and negatively to and froze immediately when hearing it, with time has grown on me and I’ve started to like it, even a whole lot. A prime example of this is the Norwegian singer Fay Wildhagen and her newest full-length album, Borders, with which I fell in love so deeply in the end that I shared almost all of the tracks from it on my blog, and I really like Fay now. But that is very rare. I didn’t even mention my sensory anxiety to that blind guy, nor even that I get the “energetic” thing, because as I said it’s a difficult topic for me, and I only knew him for a day or so.

Usually, I can become more or less desensitised to a specific sound over time, but there are sounds which have been haunting me since forever, and sometimes it happens that I become scared of something again if I’m exposed to it. For example, there’s that song by Mattofix, I’m not sure I spell the name of the band right but I don’t care, I’m not going to check it out, the song is called Big City Life. I was scared of it for weeks when it was a hit, and couldn’t recover properly because it was a hit so it was everywhere as hits tend to be. Over the months or perhaps years, I felt like it was over, but then when I heard it again much later when I was generally stressed, it all came back! The worst thing is that Olek loves this song despite it’s over 10-year-old, and I once mentioned to him that I don’t like it. That’s what I usually say to people when something triggers me, because, well, what other thing could I say? “Huh, this tune makes me feel so “energised!”? ๐Ÿ˜€ ๐Ÿ˜€ ๐Ÿ˜€ But he of course thinks I only don’t like it, in a normal way, it just doesn’t appeal to me, it’s just my cup of tea, you get it. So I always dread riding anywhere with him in his car because he will ALWAYS, ALWAYS play this!

So far I haven’t been able to find a strategy that can totally eliminate it, except for some really really effective distraction but that’s rarely achievable to such a degree, and I am not expecting this app to do the trick, but there are things that can often decrease it more or less, one of them being surrounding myself with friendly and calming sounds. Typical relaxing music is something I like but something that sometimes works, and at other times does not, because it can have weird harmonies which don’t necessarily sit right with me when I’m already set off, so I go for things that are familiar usually, or that have very low risk of being potentially scary, and it doesn’t necessarily have to be objectively calm though it’s good if it is (Enya is the best!!!), but really when I’m like extremely bad anything can feel scary, packed with adrenaline, evil and aggressive, with the aggression geared directly at me, even Misha meowing. ๐Ÿ˜€ That’s really extreme though and happened only once to me – with Misha and when it’s this bad, it just has to go away on its own or only sleep helps temporarily if I can put myself to sleep. – And meds help to some degree too.

And so I thought that creating such friendly environment for myself with this app could be very helpful in such a crisis situation, assuming that I’d mix the sounds feeling relatively normal so that I wouldn’t have to do it at the moment when I need them, and so that’s what I did. It could be even more helpful in situations where I would be actually hearing something disturbing and not really able to extricate myself out of a situation, but would at the same time happen to have my phone and headphones with me. I could isolate myself pretty effectively unless the sound would be particularly loud. Sadly things rarely work like this that you always have what you need at the right moment, I rarely go out with headphones or even go around the house with them, but it’s good to have such an option, and I did have such situation last month with Sofi where she was watching some YouTube video in my room with really scary music, and I just happened to have my new headphones at hand and they worked well as they have a noise cancelling functionality in them.

I like the idea of immersing myself in a friendly sound environment like this which I can almost fully control, and cut myself off from silence/scary sounds/my brain throwing the scary sounds at me, at least to a degree.

There is only one problem and potentially could make it all a bad idea. When I experience this sensory anxiety thing I also feel very hypervigilant, and have the need to control what’s going on around me, in my immediate surroundings. When I’m struggling with this I may feel like someone is standing behind me, or maybe not even truly feel but just have a suspicion and be anxious that there might be someone standing behind me. Some of my stronger sensory anxiety triggers that have been with me throughout my life have become like almost fully personified, I think mainly because they are often featured in my sleep paralysis dreams, and while I always know full well that it’s all in my brain, no matter how I’m feeling, when I get flooded with intrusive scary sounds from the inside, or triggery sounds from the outside, aside from that weird, uncomfortable feeling and the rush of adrenaline, I feel like something scary is going to happen next, I can’t explain it, not even fully to myself, and it’s not rational at all. And then often when I feel the slightest movement around me, feel the slightest creek, or even nothing at all, I feel like someone might be there. Even if it’s an actual and well-meaning human being, it can still be scary when I don’t know full well that they are actually here. And it’s not even about someone’s presence, it’s just very general, when I’m unaware of my surroundings in such situations, it can just generally feel creepy and like I’m totally out of control and like absolutely anything can happen. It’s really difficult to describe, well, this whole thing is really difficult to describe.

Oh shit, I already feel kind of jittery just from writing about it all. Let’s bring some great music oon. And good that I have Misha here.

So, to sum this weird post up, I think I’ll just have to wait for the triggery stuff, and then I’ll try it out. I’m really excited and curious what the results will be though I’m also a bit scared that it won’t work. It does have the potential to work very well though, so let’s be hopeful!

How about you? ๐Ÿ™‚

Question of the day.

Hi people! ๐Ÿ™‚

What was the last thing you purchased?

My answer:

I went with my parents and Sofi on Monday to do some shopping, Sofi needed some stuff for school and I needed to get myself a larger power strip for all of my newly acquired chargers and cables – to do with the iPhone. The strip I’ve been using for years is not enough for my needs at the moment, as it only has three outlets. I’ve actually purchased a new strip already last week or so, I bought it in iSpot – which is Apple’s reseller – I decided to buy it there as I had to get some accessories from them anyway so I got a discount for the strip – it was called Eve Energy Strip – and, as you could expect from Apple related stuff, the strip I got was smart and compatible with Homekit – so that I could control it from my phone, without having to dig my fingers into an outlet every time I wanted to plug something out or having to guess whether the strip is on or off as I had to with my old strip. With Eve, I could for example tell Siri to switch one outlet on, while all the others would be off, which was not possible with my old strip, which was either on or off, and so if you wanted something not to waste the energy you just had to plug it out. I really liked Eve and the level of control I could have with it, and how easy it was actually to use, but there was one huge problem. Despite the iSpot guy told me that it was going to have six outlets – three normal ones and three USB ones – it had only three outlets. Way too few for me now. I need at least six, ideally seven or eight. So as much as I liked Eve, I had to pack it away, and was going to return it once my Mum comes back from her trip in the mountains. I told Mum about that and she called the iSpot people, and the guy who sold me the strip was very apologetic, saying that someone in the magazine must have made a mistake and shipped the wrong one.

Mum came back last Saturday and we decided to call the iSpot general helpline and have them take Eve, while we would go to our local iSpot shop and get the right one in the meantime. Which we did on Monday. This new strip was called Koogeek and did have six outlets, although its cable was ridiculously short, which was a bit of a problem as the wall socket in my room where it was supposed to be plugged in is under my bed, so that meant the strip would barely stick out of there, and I would hardly be able to use my devices on the bed while charging, which I do a lot. But there was a much bigger problem with Koogeek, as it turned out when we got home. I installed the Koogeek app on my phone to connect the strip, and boy was I surprised by it! I think it must be some sort of a really geeky-techy app because I wasn’t able to do anything with it, absolutely flipping anything. The manual said I had to create a Koogeek account, and yes, there was a button called “Join Koogeek”, but when I tapped on it, it did nothing. Nothing was loading, opening or even trying to open, no communicate or anything. Oh well – I thought – must be something with VoiceOver. I’ve heard from people that some apps are so wonderfully made that when there is some sort of a checkbox, like for example when you have to accept privacy policy or stuff, for some reason you won’t be able to do it with VoiceOver, you’d have to disable it to accept or check whatever is required. I haven’t seen anything like this in my short time with iPhone but thought that must be the first time. I called Mum, disabled VoiceOver and asked her to look at it, but she also couldn’t do anything. There were a few other buttons as well and none of them did anything at all. We sat with it for an hour and both got very pissed, but it wasn’t helping either. In the end, Mum came up with an idea that I could return this shitty Koogeek thing, because even if there is some way for the initiated people to connect it to the iPhone, if there are problems with such a basic thing I probably would have more problems with this strip further down the road as well, and instead I could keep the Eve, which was still here, and get another Eve to go with it, and, with some rearranging in my room, have them both plugged in different sockets. This is some solution and after some thinking I decided it’s not that bad at all. For now I have my most basic stuff plugged into the Eve. Of course I could write to the Koogeek support now asking them for help, but with my luck with tech support people in all sorts of different companies I can’t see it could accomplish much and would be a waste of time.

Only then when Mum thought seriously about driving back to iSpot on her own (previously it was Dad who drove us) she didn’t like the idea. It’s rather far from us, in a big shopping centre, and Mum didn’t feel confident going there, as she doesn’t know the way there very well and she once got lost in that same shopping centre with Sofi as it’s really huge so she has like a mini trauma associated with it. And Dad definitely wouldn’t be up to going this far yet again, for such a trivial reason. So I decided to give the Koogeek thing to Sofi, who was very happy and didn’t care about the phone app and Homekit, and became even happier when she realised that, for whatever reason, her phone charger, which always made her phone act very weird while charging – it wouldn’t let her write what she wanted but would write some other characters or wouldn’t respond to her gestures appropriately – now worked just fine with the new strip. So that’s good at least.

But that means I’ll have to pay for THREE, not particularly cheap power strips, which is quite outrageous, and not fun as I’ve had quite a lot of expenses in the last few months due to the whole iPhone thing, especially with the headphones and speaker. At least I hope the two Eves will be usable for me for a very long time.

How about you? ๐Ÿ™‚

Question of the day.

Hi people! ๐Ÿ™‚

What’s the hardest you’ve ever worked?

My answer:

What comes to my mind is my final year of college/high school, before my final exams. As you may know, all things math are quite challenging for me, so that I even got the diagnosis of dyscalculia, albeit very late in my schooling as I was already 17, and it was a bit weird because technically for some reason blind people cannot be diagnosed with dyscalculia, really don’t get why, but I did have an assessment and the psychologist evaluating me decided I have it, perhaps because my then math teacher was her friend and this diagnosis would make things easier for both me and her. I’m not 100% sure whether my difficulties indeed could be classified as dyscalculia, assuming dyscalculia was normally diagnosed in blind people, because while I do struggle with a whole lot of mathematical concepts and operations to the point that even calculator isn’t helping much, if at all, since using it the right way feels like a challenge just as well, and I also often misread numbers, like when I’m reading aloud or rewriting some math operation I will recognise the numbers properly and have them right in my head but read or write down completely different ones, and I have a lot of trouble with remembering numbers, especially if there’s no meaning or stronger association with them for me, I don’t think I really do match ALL of the criteria, for example I do not have big problems with very basic operations, or have quite a good concept of time, I typically have no problem counting things either unless it’s something more abstract and complex like money or similar then I often need some help or at least much more time than most people I know to figure things out. Anyways, I don’t even feel particularly remorseful if it’s not exactly dyscalculia that I have because this label had been somewhat helpful in my last years of education, although still not substantially helpful and in the grand scheme of things didn’t really change much. Just that my teachers were more understanding than they were previously in the blind school, though they were also more clueless as for how to teach me, that I started having much better math grades and it was a little less frustrating, and that I could make a few more mistakes on the math final exam, which in the end didn’t mean anything as I didn’t pass it anyway.

What I’m about to say though is that one period when I was working very hard was studying for that math final. I had a math teacher at school, but while she was an amazing person and most helpful and accomodating, she was quite clueless about how to teach blind people math, so my Mum also found a tutor for me, who was a surdo- and typhlopedagogist, which simply meant she was specialised in teaching deaf and blind, or deaf-blind, people, and in her particular case her subject was maths. She was also a really great person and I really liked her as her, though just thinking of her these days makes me feel a bit sick ’cause we spent sooo much time together during these three years of my high school, and our time together was filled with so much pent-up frustration on both sides that with time it felt like there was no room for other, more pleasant feelings so that I automatically started to feel ragin’ inside upon just seeing her which I’m pretty sure was mutual. She had it worse, though, because after dealing with me every week for at least 1,5 hour, she had also Sofi, who isn’t blind or deaf but my Mum decided that my tutor was so valuable both as a teacher and as a person – which she undoubtedly was – that she’d like her to help Sofi out as well. Sofi perhaps doesn’t have dyscalculia or whatever it is that I do, but she does have a lot of trouble with concentration and just doesn’t like exerting her brain too much which she was very openly manifesting so working with her wasn’t too easy for our tutor either, because she often just wasn’t collaborating and preferred to chat with her about other things, or often didn’t do the homework that she gave her and then blamed her if she had a low mark on a test. Not that the tutor was unable to manage it, but it’s difficult to work in such challenging circumstances for so long at a time and so I don’t blame our tutor for not wanting to work any more with Sofi right after I had my finals.

We were meeting throughout the three years at least once a week for at least one hour and a half, during the last year it was longer and more often. And the last year of our collaboration was particularly draining. Of course on top of that I also had plenty of work she gave me to do on my own, which usually I happened to totally screw up so I wasn’t particularly motivated to do it but at least she wasn’t nasty if I did something, even everything, wrong, so I didn’t skip my homework like Sofi did or much less often, also Sofi wasn’t having her exams in a few months’ time so she could allow herself for that, but not so much me. Since the second year of high school I also did most of my schooling by myself at home, as the majority of my teachers weren’t as accomodating as the math teacher and based their lessons on slideshows which of course I couldn’t see, or totally ignored me/seemed to be utterly scared of me, so I figured I’d learn more doing the school work on my own, it’d be less stress for everyone and would be so much more productive. They agreed to this idea very happily, and I was happy too, as I like learning things on my own if only I am capable of it, but it all at once with math felt like quite a load of learning.

The whole final year was totally draining and I was feeling pretty badly mentally overwhelmed most of the time and had very high anxiety, not just about the finals and related stuff, and as a result my sleep cycle and quality that year was particularly all over the place, which didn’t help with my math focus. I was pretty sure I wasn’t going to pass the math final, or at least couldn’t imagine passing it unless with some huge stroke of luck like the one I happened to have in secondary. I had even no real motivation for learning or even writing the finals because I had no realistic idea what I would like to do with myself afterwards, and it didn’t feel like I had a whole lot of realistic options that I felt would be something for me. I wanted to do Celtic studies online in Wales, but the uni’s “learning environment” turned out inaccessible and when I contacted them about it they never got back to me about it, or Scandinavian studies at the local university but my Swedish teacher strongly discouraged me from it saying that I wouldn’t get anything from it, my language level certainly wouldn’t go up from where it already was and other subjects in there were mostly just for the uni to get as much of the faculty financially as possible, and few of them were actually useful. Since the only reason I wanted to study Scandinavian studies was Swedish, when I learned that and then read some more about it I lost my interest in it. I suspected I was going to wait a year after finals with making the ultimate decision about what I wanted to do or study. But I thought that even if I’m not going to pursue any higher education afterwards, it still would be good to have the finals passed just in case I wanted to do something later and just for self-satisfaction. And I decided to take it as a challenge, just to see if I can surprise myself and pass the math. I thought if so, I’d be euphoric and it would just be another situation where my defensive pessimism worked wonders, but if not, nothing bad will happen, I have no immediate academic plans for the future anyway and I know what I can expect from myself. I decided that in such case, I would not rewrite it. At least not until I find some real reason that would require me/make me want to do it again. I also told my family about it and they agreed it’s a good idea not to be too worked up about it. A lot of them are intellectual people but they’re not crazy about education being the first priority in life so they understood where I was coming from. I may feel insecure about most things in myself, but all of my brains are not one of them so essentially I wouldn’t need a piece of paper to confirm my intellectual abilities or knowledge for myself, and since it seemed unlikely for everyone who knew me well anyway that I would be able to find any serious employment, unless in some really unusually fortunate circumstances or in a situation like the one I’m in now with my Dad, that is when someone knows my strengths and limitations well, it felt like even if I did pass the math, probably the only thing I would be able to do with the paper confirming it would be making use of it in the loo, would I ever happen to be deprived of that so unloved, yet so useful thing called toilet paper, as a result of unemployment. ๐Ÿ˜€

And so, despite math was not my extended subject, I spent a whole lot of time studying for it, and didn’t really feel like I was getting much more of a clue over time, only felt more hopeless and anxious about the thing and everything was getting more and more mixed up in my brain. Sometimes after the brain draining sessions I had strong self harm urges or just went to sleep for the next couple hours which of course meant that then I didn’t sleep at night or slept very little, so if I had another brain drain marathon the next day I was even more clueless, and often I could barely hold my shit inside and not flip out at my poor tutor, just as she seemed to have a very similar problem. ๐Ÿ˜€ My tutor had some health problems and would often catch infections or feel poorly, and some of these times she felt unable to come to us, which was a feast for Sofi if it was on a day she was also supposed to have her lesson, and a relief for me in some way, though that also meant I had more stuff to do on my own.

And so as most of you know if you have been following me for some time, or perhaps even from the beginnings of this blog which has started out the same year when I had my finals, I didn’t pass the math and so far haven’t tried to do it again, especially that my score was quite spectacularly low so I don’t know how I could get suddenly a high enough one when I couldn’t get there after three years. Also at the time of exams my circadian rhythm was upside down, and in the school where I was passing them (which wasn’t the school I attended but a special school for the blind closest to my home) I got super triggered by one jerky, stinking headmistress with too much testosterone, I wrote about that on my blog at the time though the post is currently password protected so I’m not linking. And so my motivation for repeating the experience is currently zilch.

My family, despite their initial support and despite they were aware of what my plans were, at least those people I felt needed to be aware, in the end were totally shell shocked when they learned about my results, both that I got such very high results from languages and so low from maths, and even more so when I told people again that, just as I said earlier, I am not going to rewrite the math unless I see the need. The only person who stood by me loyally, and uncritically, as always, was my grandad, who paradoxically is the most intellectually and academically-minded person in our family. And most of them have accepted my choice over time, though I have to admit I initially felt sort of guilty and not sure if I was doing the right thing, seeing their extremely shocked reactions.

So yeah, that whole year was definitely a time of hard, but at the same time pretty fruitless work, which made it feel all the harder, so I’m pretty sure I can say it was the time of hardest work for me. But I’m so glad the damn thing is over and that I don’t have to have anything to do with maths anymore or not to such an extend, anyway! It’s possible I had situations when I worked harder, especially mentally, but when you have more motivation or when it feels more meaningful it’s all the easier to do, even if objectively it may require more effort.

What was such a situation for you? Did your hard work pay off? ๐Ÿ™‚

Question of the day.

Do you ever talk to yourself, or sing?

My answer:

Oh yeah, I talk to myself a lot and in different languages. It’s genetic, as my Mum’s the same, so we say we have such rich inner lives they’re spilling out, but my Mum has it worse, because she often thinks so loud that she doesn’t even know she’s thinking aloud and doesn’t realise that she’s just said what she was thinking, which leads to weird situations, but she doesn’t even care. But then when someone happens to be around while she’s spilling out her mind unbeknownst to herself, she is either very surprised and thinks that the other person must be a telepath, or accuses them of eavesdropping. It also seems like she has the same problem when she goes running, she has earbuds on when running and always thinks about loads of things and often finds that people look at her in a strange way, so she thinks she must think aloud while running too. It’s quite strange that someone would be so unaware of it but it’s funny at least from the observer’s perspective. I try to have more control over what’s spilling out of me and in what circumstances, and I don’t even have to try too hard as I’m way too blocked to do that so spontaneously, unless I just don’t know that someone is around, or happen to be extremely deep in thoughts, and then sometimes weird situations happen to me too, in such cases, but that’s really rare. I also talk to Misha and so if anyone ever happens to overhear something they also often assume I’m talking to myself. But, to avoid weird situations, since I can’t always know for 100% if someone is lurking around, and to practice my languages, I prefer to speak in other languages than Polish when talking to myself. And so my default language for talking to myself these days is ENglish, but I also talk quite a lot in Swedish and swear in Finnish. I also routinely have discussions with people on the other end when for example listening to something, like a YouTube video, a radio programme, whatever, even when reading things sometimes on the Internet but with speech synthesis, not in Braille, the more engrossing it is for me the more likely I am to do that, and voice my opinions, regardless of that the people on the other side are not going to hear them. With this I don’t even restrict myself so very much to when other people in my surroundings can’t hear it. ๐Ÿ˜€ Sofi picked it up from me and she also has discussions like that with her favourite YouTubers, for example, of which she has many.

I also sing to myself sometimes but it’s mostly in specific situations. I often sing for Misha when we are in my room. I seriously don’t know, perhaps it’s just me being megalomanic or something (although I don’t think I sing that extremely brilliantly, I just have musical hearing and can sing in tune and that’s it), but to me it looks like he likes when I do that and he relaxes himself and is listening very intently, so even if it’s just an impression, I typically do that when he’s going to sleep or when we’re having a cuddle time, he needs that sometimes, usually after a long time of being on his own, he’ll come and want to be petted and cuddled, and then I sing him to sleep, or when I have a feeling he’s sad or something’s wrong. I seriously think Misha’s not indifferent to music, and not only because he gets scared by very loud music. I also sing when I’m in desperate need for some background noise because of the sensory anxiety and there’s no other way of getting it. It only works so-so, but so-so is always more than nothing. And sometimes I just sing when I feel like it and when I’m alone but that’s pretty rare, I used to do it more.

You? ๐Ÿ™‚

Question of the day (13th August).

Hi people! ๐Ÿ™‚

Do you read or watch TV before falling asleep?

My answer:

I always read before going to sleep. I also listen to the music before I fall asleep and while I’m sleeping, as that helps me with anxiety and also I just like it this way. I read on my PlexTalk, and have a sleeptimer on, so that the book doesn’t keep on going or at least not too much when I’m already asleep. And in the background I have my iPhone quietly on, just enough so that I can hear it, either playing music on Spotify or some radio. If it’s radio it’s either playing some station which plays only music, and such that I really really like, and there are only few stations whose music I’d love so unreservedly, or, more often, it’s just talk in one of my favourite languages. Sometimes I also listen to some podcasts in bed but that’s rather if I’m not planning to go to sleep just yet.

How is it with you? ๐Ÿ™‚