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. πŸ˜€

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. πŸ˜€ 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 πŸ˜€ ). 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. πŸ˜€ 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. πŸ˜€

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. πŸ™‚

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. πŸ˜€ 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? πŸ™‚

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:

Β Β  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. πŸ˜€ 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.

Β Β  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. πŸ˜€

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. πŸ˜‰ 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. πŸ˜€

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. – πŸ˜€ –

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. πŸ˜€ 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.

Β Β  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. πŸ˜€ 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. πŸ˜€ 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.

Β Β  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. πŸ˜›

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. πŸ™‚

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. πŸ™‚

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? πŸ™‚

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! πŸ˜€ 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 πŸ˜› ).

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). πŸ˜€ 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? πŸ™‚

Question of the day (17th September).

Hi people! πŸ™‚

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. πŸ˜€ 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? πŸ™‚

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

Hi people! πŸ™‚

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. πŸ˜€ 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 πŸ˜€ 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. πŸ˜€ 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!”? πŸ˜€ πŸ˜€ πŸ˜€ 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. πŸ˜€ 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? πŸ™‚

Question of the day.

Hi people! πŸ™‚

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? πŸ™‚

Question of the day.

Hi people! πŸ™‚

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. πŸ˜€

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. πŸ˜€ 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? πŸ™‚

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. πŸ˜€ 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? πŸ™‚

Question of the day (13th August).

Hi people! πŸ™‚

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? πŸ™‚

Question of the day.

What time do you go to bed?

My answer:

As in my answer to the previous question, my circadian rhythm is screwed up so there are no rules whatsoever in practice for what time I fall asleep. I do try to have a more predictive bedtime though if possible, so my standard goal is to be in bed by midnight, not later. I might eventually get up if I’m not having any luck falling asleep for an hour or longer, or when I’m feeling mentally crappy and if I am only able to sleep, I like to go to sleep earlier and sleep as much as possible.

You? πŸ™‚

Question of the day (11th August).

Let’s talk a bit about our daily habits.

What time do you wake up?

My answer:

Really hard to say. It’s different almost every day, or at least every few days. It depends on which timezone my brain clock is at the moment. As you may know if you’re a regular reader of my blog, I have a problem with circadian rhythm, probably mostly due to that I am blind and don’t have any light perception or anything so my brain is probably permanently confused whether it’s day or night, but I’ve also learnt that pituitary is in some way responsible for controlling circadian rhythm – not sleep-wake cycle as such I guess or I’m not sure about this particular thing, but circadian rhythm in general, in any case, it could be relevant since I have hypopituitarism, and mental health surely plays a huge role with sleep problems as well. – Whatever is the reason, that’s how my brain works, and I’m mostly okay with it at the moment, of course it can be annoying but I am now having the luxury of being in charge of my own time at this point so I can usually decide when I need sleep and when trying to sleep doesn’t make much sense so it’s better to stay up and do something constructive. I used to supplement melatonin but it would work only to some extend, meanwhile giving me loads of vivid nightmares. I have a PRN sleep med which helps and I try to have some kind of a sleep-wake schedule at least in theory, something to aim to I’d say, but what probably makes my sleep problems worse is also that I’m not the best at sticking to sleep routine, but also I don’t want to be too obsessed with it as that could get more stressful than helpful long-term I guess. So that being said, my waking time shifts depending on my current circadian rhythm, and my circadian rhythm seems to depend on a lot of things, external and internal, I guess I’m not even aware of all of them, funny thing is also that with my sleeping and waking times, my need for sleep also changes kind of in cycles and sometimes I feel the need to sleep a lot, and sometimes I feel rested after just a few hours and get lots of energy at night, or don’t sleep at all.

With my “ideal” sleeping schedule, I try to wake up at 7:30, because I’ve figured out after some experiments that it seems to be a generally optimal time for me, though as I said, it can look different in practice. I have an alarm – previously on my PlexTalk, now on the iPhone – and I try to stick to it when possible, but when I’m not asleep say by 3 AM I just turn it off so it doesn’t wake me in case I will fall asleep until 7:30, since usually falling asleep that late I’ll also probably need to sleep a bit longer than that, or when I feel very sleepy and it goes off I just turn it off, go back to sleep for however long I need and don’t care, unless I have somewhere to go or something really important to do on time. Also when my depression is particularly bad, sleep is my best friend, as long as I can get it, and then I turn into a real sleep escapist if only I can do it and have no plans, and turn the alarm off altogether, and turn it back on again when I feel more motivated to actually live or when it’s really necessary for me to get up at a specific time. At the moment though, I’ve been sticking to my normal waking time since a few days and I like it, though my falling asleep time is later than it should be in theory so I’m not getting a whole lot of sleep but I’m not feeling it really.

How does it work for you? Do you have any sleep routine at all and if so, are you good at sticking to it? πŸ™‚

Question of the day (9th August).

Hey people! πŸ™‚

I’ve found an interesting question online and thought I’d ask you:

Have you ever had anyone ask you, (How did you get so smart)? If so, how did you answer them?

My answer:

Oh yes, and that’s partly why I found this question interesting, haha. I get a lotof questions like this from people and I usually don’t really know how to react. My intelligence is one thing about myself I think I have a reasonably rational view on despite the AVPD thing and I do think I’m intelligent, I’ve always heard that I’m above average and I also feel this is true, also my brains are something that have helped me to cope in all sorts of situations and I’m so very grateful for being gifted in this area, but I also don’t know how it happened that I am “so” smart. People usually say that because they’re surprised that I know a lot of different things not everyone knows or that they wouldn’t expect me to know. So when people ask me such questions, I don’t know what to say because I just don’t know why it is how it is, other than it’s just is this way and that some people in my family are highly intelligent, and I also don’t know what kind of answer they expect. Is it supposed to be some sort of a bit odd compliment in the form of a rhetorical question? πŸ˜€ Or do they really want me to explain the whole process, or whatever? Also I really don’t want to sound like I’m bragging or something.

So how I usually respond is either saying something light along the lines of: “Oh really, did I?!” or “It’s because I never add lemon to hot tea so I probably don’t have that much alluminium in my brain” or that “It’s my grandad’s fault” or “I wonder about that too, y’know? My Mum says it’s a bit of a miracle” or “It’s because I trained my memory so well as a kid by learning all the name days in the calendar” etc. etc. or I get all confused and don’t say anything really, or I tell them seriously that I don’t know, but I read a lot as a kid and seem to have some weird ability to retain loads of information and have always had and am learning things quite quickly, at least some things. It depends on a situation, the other person and how I’m feeling, which approach I take.

The first time I remember I was asked a similar thing and that really made me think hard, was when I was at my classmate’s house for a few days, and her brother once asked me how it is that me, or his sister are quite smart, while some other blind kids are not and why (he was referring to another girl from our class who visited them earlier and who also had some mild intellectual disability and was a preemie and had other problems). And I was literally dumbstruck. I often wondered about similar things but now that someone has actually said this aloud, and asked me, I had to think about it seriously and figure it out somehow. I really wasn’t able to tell him something more insightful at the time, and I think it would be hard for anyone of any age because well, how do you explain why some people are smart and some aren’t, regardless of whether there are some disabilities at play or not. So I just told him something about that that girl was a preemie and I was not, and that my family at least on Mum’s side are smart people, and my Dad was teaching me things like capitals of countries and such when I was very little so maybe that was why my brain was quite well-developed. But I was thinking about it for a reeeally long time, and I don’t think my answer was satisfying for him, either.

Have you ever had similar situations or is it just me? πŸ˜€

Some fun stuff instead of question of the day.

Hi guys! πŸ™‚

I’ve found something today that I thought I could post on here so we can have some fun. Below are sentences that we can complete. I’ll do it here in this post, and you can do it in the comments, or in your own posts (don’t forget to pingback or leave the link in the comments so I can read it). Keep them as long or as short as you only wish. For your convenience, I’ll write the unfinished sentences alone first so that you can copy paste them without having to edit them and delete what I wrote. Here goes:

I am confident about…

I am insecure about…

I need to…

I want to…

I like to…

I recently bought…

I am thinking about…

I am anticipating…

I am procrastinating…

I am watching/listening to/cooking…


I am confident about… nearly nothing, I guess. I’ve been thinking on this for a while now and I just can’t come up with one thing I would be like absolutely and unquestionably confident about. πŸ˜€

I am insecure about… almost everything, which I guess is pretty logical from what I wrote above.

I need to… find myself another faza. It’s really getting imperative! I haven’t written much about that lately but I’m still searching intensely. My latest finding has been Jack Hughes who is cool but too normal, not versatile enough, and has a bit peculiar way of singing which would be annoying for me long-term. Why do I have to find a faza for myself in the first place, rather than it just happening without my conscious effort, like always before? My brain is getting way too lazy. And it’s a vicious circle because lack of a faza and thus beneficial stimuli in the right amount only makes it more lazy. πŸ˜€ What do you do with a lazy brain?

I want to… stop cutting myself. I did last week again, and a couple of times, so this time I only managed to go without it a month or so I believe. And on the other hand I don’t want to stop cutting. Well but what I do want is I don’t want to do it in such an impulsive way. Or at least be able to not do it for longer periods of time, like once I managed not to cut for about half a year. In case you’re wondering why I did it, I was just feeling depressed and overloaded, also had a lot of anxiety for no obvious reason, it was my friend Jacek from Helsinki’s another death anniversary on July 29, and then later in the week it was my cousin’s 18th birthday party and I reeeally couldn’t deal with the socialising and all that comes with it. Quite ironically, I have some special memories with Jacek from Helsinki and my own 18th birthday party, which didn’t help. But it’s better now.

I like to… sleep with Misha.

I recently bought… my new Bang & Olufsen headphones, yaaaaaay!!! Seriously, this was a very spontaneous purchase, totally on the spur of a moment, completely unlike me, just because it was my Mum who found these headphones online on sale and she told me about them, I only briefly looked them up online to see if it could be something for me and it seemed like it could perhaps be but might just as well not be, but it was on Zalando Lounge so they were way cheaper than they would be otherwise and I could return them if I decided they’re not for me. I really needed some good headphones for my iPhone, I also need a good speaker(s), so I figured I might just as well try these with an opportunity like this. I had to wait ages for these headphones, about a month, and also I was rather sceptical whether it could really be something for me ’cause I’m sort of picky and have some very specific requirements. But they came on Monday – just before my parents went out on their camper van trip so Mum could pick them up for me – but they had to go and Sofi wasn’t home when they were leaving so I had to set them up and pair by myself. Which was not difficult but I had no accessible manual or anything and I didn’t really know how to do it. I figured how to turn them on and turn Bluetooth on after a while but they still weren’t visible for my iPhone because it turned out I had to get an app to set them up, so I was very apprehensive and wondered how accessible it’ll be with VoiceOver – the iPhone screenreader – and moreover how usable for me as a still more or less beginning iPhone user. It would probably be badly inaccessible if not the fact that VoiceOver can now guess what different buttons in an application do from how they look if they’re not labelled properly, and as far as I remember none or very few were labelled originally in that app and VoiceOver did a very good job at the guessing game. Then I didn’t remember what exactly model I had and I had to select the one I had from the list in the app to set it up, and some only differ between each other with one number so not very Bibiel-friendly. So I ended up having to call Mum and she had to check up what my model was. Then still iPhone couldn’t connect to the headphones for ages and I was getting really frustrated, but then finally I did something random and they did connect to each other. And once I had them paired, a very Bibiel-friendly manual showed up – both with audio and text, not some weird, hardly descriptive video like a lot of tutorials are – so I could figure out hhow to actually use the headphones without anyone’s help very easily. And once I learned it it was very rewarding because I’ve already grown to like the headphones a lot. I would never buy them for their original price, I seriously don’t think the sound is worth as much, but it’s definitely good for me and good for the price I paid for them. When I read reviews people complained that the active noise cancelling feature is meh because it doesn’t work as well as in other similar headphones but for me it’s just right. They’re my first noise cancelling headphones and, I don’t know, I have a terribly, horribly, freakishly loud desktop computer and when I turn the noise cancellation on and sit at the desk I can barely hear the hum nor anything else outside. Granted, I don’t need some really extreme noise cancellation, I am obviously blind and a control freak, I want to know what’s going on around me most of the time so that I don’t need to worry that someone is lurking behind me and I have no idea because I’m listening to music. On the other hand I do like the noise cancelling for situations when I don’t need to hear the world around me so that I have a good and immersive environment for daydreaming haha, and these headphones are just right for this purpose. Even yesterday I had a situation when Sofi was in my room, watching a video on her phone, and there was some really weird music that was setting my brain off a little bit, so I just quickly put my headphones on and turned my own music on with the noise cancelling, and I could no longer hear Sofi’s evil shit. They also have transparency mode which is good sometimes for such people like me (Sofi once said that they should invent cheekphones for me because with my computer headphones often when someone was in my room or something I would have the headphones more on my cheeks than ears so that I could hear my surroundings clearly without having to constantly put on and take off the headphones, yes, cheekphones could be a cool idea for some specific situations πŸ˜€ ), and integration with Siri which is useful at times, and the earpads are really comfy, though I haven’t used them for a longer stretch of time yet. They have gesture control which seems to work very poorly, or perhaps it’s me not doing the gestures the right way exactly, but thankfully you can also control them within the app or just simply from the phone. They also have a cable so I can plug them into my PlexTalk which does not have Bluetooth which is cool because my previous PlexTalk/computer headphones are falling apart. Oh wow, what a mini review I just wrote lol.

I am thinking about… Jocky, whom Sofi has just let inside and he’s devastating the house and barking his lungs out, and about Misha, who is thankfully cosily tucked inside my wardrobe – this is his recent hideout for when he’s a bit stressed as it seems, and he certainly is stressed now because Mum is away and he’s very attached to her.

I am anticipating… huh, nothing really. Can’t think of anything I’d be anticipating at the moment.

I am procrastinating… way more than I realise on a daily basis. I’ve only recently thought more about it. I really procrastinate a whole lot and it’s usually because of anxiety as it seems. But it’s not like impairing or anything so I can’t say I care very much, just a little alarming when you suddenly realise such things.

I am watching/listening to/cooking… listening to BBC Radio Cymru at the moment.

So, who wants to play along with me? πŸ™‚

Question of the day.

Hey people! πŸ™‚

Today I have a question for all the female readers of my blog which is the following:

How old were you when you got your first period? How did your family and friend react? Did anyone say anything weird?

My answer:

It was a little strange with me because from what I’d always heard from my endocrinologist, it was quite possible for me not to have period due to my pituitary not working quite as it should. So when all or almost all of the other girls in my boarding school group and class were already having period and for me nothing was really changing, at least apparently, I readily and happily assumed that I’m going to be spared and didn’t really care much about periods anymore, and my Mum also assumed I’m not going to have it so that’s better for me. Not that I ever did overly care about periods, it never seemed very creepy or shameful like it does to a lot of girls, I was quite aware of what it was from observing and hearing people and also my Mum talked a lot about it to me, at least what it feels like and what it means and what it’s like in theory, so I knew what to expect. There was a lot of taboo around things like this in my Mum’s family, my grandma is scared of even such words like vagina so Mum herself always wanted it to be clear with me and now with Sofi that, while it’s something extremely intimate, it’s not a taboo or anything shameful. So one day in April I was greeted to an extreme surprise when I woke up – I vaguely remember that I had some exam on that day or something… something to do with music school I believe – and felt all wet and sticky down there. I honestly was convinced it must be something else, just some other kind of discharge, but no! I was a little shocked to learn that it happened after all. But actually it wasn’t even that very late, I don’t remember how old I was exactly, but I couldn’t be older than 14 I guess. Luckily that first visit of Jack the Ripper/Butcher in my life was not particularly painful or intense, which changed quite soon afterwards, but still I think I was rather stressed about it and worried that I won’t be able to manage it well practically, because one thing my Mum didn’t do was that she didn’t show me or explain to me at all what I’m actually supposed to do when having a period, probably because she didn’t seriously think I’d have to bother with it in real life. And I didn’t like having to rely on the boarding school staff ffor assistance with my period hygiene at the beginnings. It took me quite some time, but luckily summer holidays came quite quickly after that so then I had less stress about it and could learn to put a pad in my underwear and not to make everything around messy while I was showering. πŸ˜€

I didn’t really tell that many people started having periods – my Mum knew, and the staff at the boarding school, and my roommates – and a couple of my close online friends, but I don’t think anyone of them said anything at all, let alone anything weird. Those of them who knew about my hormonal issues were only surprised that it actually happened, and as I said so was I.

How was it with you? πŸ™‚

Breaking the Silence- my short story.

Hey people! πŸ™‚

I was going to write this post a few days earlier, but I was actually writing this story for a loooong time, and then rewriting bits of it, and wondering whether I should actually post it and whether I like it, and then I ended up with a migraine yesterday, so hopefully I can do it today. The title was meant to be only for the draft but I didn’t have a better idea so I left it as it was. I based it on the following prompt from The Goddess Journaling Workbook by Beatrix Minerva Linden:

I welcome new adventures. Imagine the most exciting adventure which could happen to you tomorrow. Write a short story about it. You don’t have to keep things realistic: allow yourself to dream big.

And as you can see, I did allow myself to dream very big. As always, apologies for any linguistic shortcomings and do let me know if you see something about the language that could be improved as I’m not a native and have only wrote a few stories in English so far. Also, a little note to the bit at the end of the story, about the old lady and the “guide cat”. It was inspired by a few stories I’ve heard from different guide dog owners who said that people often talk to their dogs, rather than to them, or believe some strange things like that guide dogs can read traffic signs.

Okay, here goes:

Breaking the Silence

“Oh, wow!” – I exclaimed in my brain, looking at the clock- “4 AM! Is it really?!” For the last six and a half hour, I was writing another chapter of my Jack Hamilton novel, or perhaps I should say saga at this point. I hadn’t touched it for ages, but today I must have caught up on all that time. While writing, I didn’t feel the passing time whatsoever, just like it always was back when I used to write the novel regularly, every single night at school, because when you spend time with someone as interesting as Jack Hamilton, there would be something badly wrong with you if you paid any attention at all to such a trivial thing as time. Now that I stopped writing though, and my brain hit the hard surface of the real world, the tiredness and lack of sleep hit me just as hard. Satisfied with the result of my efforts and with having been able to hang out with Jack for so long, I turned the computer off, put some music on and went to bed. Very unusually, Misha was already waiting for me in his bed, sound asleep. Usually he only comes when I call him, and when I go to sleep this late, it’s rare that he would still be waiting for me. I felt really happy to have him close to me. I laid next to him, and very soon, as for my standards, I followed him to Dreamland.

* * * * *

I was still in a deep sleep, floating from one dream to another, when I heard a very faint sound coming, as it seemed, from the real world. It felt vaguely familiar, and there was something urgent about it, but I was way too sleepy to care, and just ignored it. Admittedly, a part of me was pretty sure that it already must be indecently late for sleep, but really, what’s decency gotta do with sleep at all? I kept on dreaming. After all, you don’t get nice dreams every night, certainly not if you’re me, so why should I give up on cool dreams featuring Jack Hamilton just because there’s something squealing in my room? Or whatever is it doing. After a while though, the sound repeated, pulling me out of my new dream, but still not out of sleep. “Perhaps there’s a baby somewhere” – I thought, and fell in a deep sleep again. – The little sounds repeated more and more frequently, getting louder with each time, now making it impossible to sleep deeply and peacefully, but I was still too sleepy to fully wake up, even though with every such sound, deep down I felt an increasing sense of that I actually should for some reason. After a while they turned into wailing, and became even more annoying. Then the wailing turned into proper crying, and then started to morph into words:

“Pleeeeeaaaaase, wake up, I really, really need to pee.”

and then suddenly my consciousness started working properly. Or semi-properly. It must be Misha. Why didn’t I leave the door opened so that he could get out whenever he’d wake up? How funny that my brain started to make up words to his meowing. While I usually love waking to Misha greeting me with his little sounds and cuddle him before letting him out in the morning, when I have a late night it’s definitely not as pleasant to get out of bed just to open the door for Misha, even if I can go straight back to bed immediately. I sat up slowly and checked the time, while the now very agitated Misha jumped at the door. “What? It can’t be 1 PM already.” – I thought. “Misha wouldn’t be here by now. Sure someone would let him out”. Misha usually wakes up earlier than any of us, so when my Mum doesn’t see him downstairs when she gets up, she often checks whether he is in my room,and sometimes lets him out, because, just like me, she likes very much his presence in the morning, and when he’s not there, it feels very empty. Also she doesn’t understand that a lot of the time I find it very pleasant to be able to see Misha first thing in the morning and that it’s pure pleasure to let him out, because for her it would be a nuisance, so she does it for me as well.

“Hey, Mishmish, what are you still doing here?” – I asked groggily. –

“Hmmm, let’s think… Purrhaps because my so called “mummy” likes her sleep more than me, and no one else can be bothered to open the flipping door?”

I jumped up to the ceiling. What was that?! Have I gone totally mad now? I was frantically trying to come up with an excuse for what has just happened. Maybe Zofijka is in a silly mood and making some weird pranks? Or perhaps seriously I’ve got some bad hallucinations. I was ready to admit there must be something in what people say that I’m too obsessed with Misha.

“Misha?” – this was the only thing I was able to say.

“Misha, Shmisha!”.

I didn’t know what more could I say… Then suddenly my confusion and fear turned into pure amusement. I fell back on the bed heavily and started laughing heartily at myself. OMG, my brain must be really off that I am wide awake and still seriously consider the possibility that my cat can talk. Too much silly playing with Sofi.

“What’s so funny?!” – the little voice grew more annoyed. – Still laughing, I thought that “Actually, what’s so wrong about it? I’ve always talked to Misha so now I should be happy I can also hear him. Who cares if I’m the only one who does? Let’s just go with the flow!”. –

“When you’ll be as old as me, Misha, you’ll notice that most things are funny, even if they aren’t.”

“Deign to remember that I’m already older than you, I’m over 30 in peep years. Now, will you finally let me out so I can go to the loo or should I do it on the carpet?”

“Oh, Misha!!!”

“What, Misha”.

“Have you really been waiting all day long for me to let you out?”

I immediately remembered the time when Sasha was still with us, and when we were going for a day-long pilgrimage. Despite Misha and Sasha weren’t getting along with each other, Mum decided to put the two of them in the cellar with the food, water and litterbox, because Sasha, despite being a very clever kitten overall, had a real problem with peeing in the right place, which, as we later discovered, must have been due to some traumatic experience with Misha. He would do his thing everywhere but not in the litterbox, and had a very strong aversion to it. At least in the cellar there was nothing that could be damaged if he peed or pooped on it. Since Misha needed to do the business somewhere as well, and we had only one litterbox, he had to go in the cellar too. And when we came back from the pilgrimage, there was pee and poop in three different cellars, the litterbox was empty, Sasha was basking in the sun on the windowsill with his paws dirty from the poop, and Misha sitting high up on the wardrobe looking utterly scared. When we let them out and Mum put the litterbox back in place, Misha sprang to the loo immediately and it was clear that he was holding it all day long, so stressed he was. Also when there was a time that no one cleaned his litterbox, instead of doing his thing wherever else, he was holding it until it was clean and he could do it properly.

Poor little thing, I wouldn’t blame him if he just peed on the rug in these circumstances, as he tried his best to wake me up, and normally I wake up fairly quickly when I hear him, as this is almost always the first thing I hear in the morning, but he probably just couldn’t bring himself to do this.

“Oh my, Misha, I’m so sorry…”

I quickly opened the door and he sprang out and flew downstairs with lightning speed.

“Was that why he started talking?” – I thought to myself. – Nonsense! It must have all been in my head. Sometimes, as it seems, hallucinations can be very useful for pet owners. I wonder if parents with babies ever experience the same phenomenon? God knows how long I would sleep if this didn’t happen. Or maybe it’s because of my out-of-whack sleep that I hear cats talking?

The house was empty, except for me and my talking feline, and I was on my way to the kitchen, when I heard a voice from the loo: “Can you please turn the light on? You guys always remember about it when you go to the loo, but you’ll never switch it on fur me.”

“Okay, no problem, if you want… but do you really need it? I mean… I’ve always thought cats can see in the dark?” – I said, switching the light on. –

“Obviously I can see in the dark, but I can also listen to the music, can’t I?”

“Absolutely yes!”

I don’t know if it’s a common practice in other countries, but definitely not here, so I believe you must learn, dear reader, that we are people strange enough to have a radio in the loo, so that it starts playing when you switch on the light.

“Uhhh, you listen to some real shit! Isn’t there any proper music?”

“WHat sort of music do you like to listen to?”

“…A human asked her cat, with whom she has lived fur over four years.” – the excess of pee has definitely made Misha feel very sarcastic. –

“Well you’ve never told me so how should I know?” – I asked, a bit irritated. I never thought my little Misha could be so grumpy.

“You do know! Jazz, classical and baroque. And renaissance music is okay. ANd some of your folk music is decent. And Russian ballads… And relaxing piano music. And Russian drum & bass is my guilty pleasure”.

“Huh, my intuition must be truly outstanding. ANd Zofijka’s.” – I thought. These are the genres we’ve always imagined that Misha likes, including the Russian drum & bass bit. Also because he seems to respond very well to some of these genres, like classical music. I found the station with classical music for him and finally went to the kitchen o get Misha’s favourite sauce, hoping he’ll consider it a good recompense for my previous shortcoming, and that perhaps this way I could persuade him into some more talking. I wondered what I should eat myself, but then noticed a plate of small sandwiches, like the ones my Dad always makes, on the table, with a piece of apple pie and a mug of iced coffee, and thought they must be for me. Yum, how cool that someone thought about me! As I started eating, Misha finally emerged from the loo.

“Enjoy your meal. And thank you fur turning on the radio. You left so quickly that I couldn’t thank you in time.”

“You’re always most welcome, Mishi. Are you always so very polite?”

“Yeah, always when I speak. Even when I’m grumpy at the same time.” – he noticed his bowl with sauce and started eating happily.

“You enjoy your meal too. Why are you talking now? I mean, why didn’t you do it before?”

“This sauce is very yummy, thank you, Mila. I had to wake you up somehow, right? And I really don’t like to pee on the carpets. They’re so unpleasant, at least fur peeing, you can’t even do it discreetly on them. So I had to do something, right? Other peeps left very early and I didn’t want to get up then just yet, but I didn’t think I’d have to be imprisoned in one room for so long”.

“But you speak very well. How do you do it?”

“Duh, all cats can speak! It’s just too much fuss so we normally don’t bother. We’re not made for this. But we’d have to be really stupid if, after living with people for as long as we do, we wouldn’t be able to speak. Especially with me when you talk to me all the time and in so many languages. Can I have some more Mish ice-cream, please?”

“No, you’ve just had a whole bowl.”

“But pleeeeeeeeeeeaaaaaaaaaaaase. I’m so hungry. And I can speak so well. Shouldn’t I get a proper treat fur that? Some whipped cream or something? I can say please in Swedish. Or in Welsh. Much more than please, actually.”

“Okay, okay, we shall see if there are some more snacks for Misha. But not whipped cream, you’d have to ask Mum for that.” – I squeezed another tube of Mish ice-cream into his bowl, all the while smearing my fingers in it, which prompted Misha to start licking them enthusiastically.

“Thank you, I love Mish ice-cream so much!” – he said, rubbing his head lightly with his paw, as he always does after a delicious meal. –

“I love making you happy.” – I said, smiling at him.

“I love making you happy too, that’s my job, isn’t it”.

“I guess so. I think we bothh live to make each other happy”.

Misha sat still for a while, as if thinking deeply about something.

“I’ll be happy if you let me out now”.

“What?!” – I screamed in shock, much louder than necessary. – “Misha, you are so clever, you can speak and all. So why can’t you understand that you just can’t go out? It’s unsafe for you. You don’t know what it’s like outside. There are a lot of animals and they can do something to you, hurt you or even kill you. Or someone can still you, because you are so beautiful, and people could get a lot of money for you. Or just be happy to have such a beautiful cat for themselves for free. There’s no way I’m letting you out. You could get lost, ran over by a car, you wouldn’t know how to get food, and you’re just not used to living outside. It only looks so nice in theory, but it’s very dangerous for such small, beautiful and unexperienced little Mishas”.

“Is your lecture finally over?” – he sighed theatrically – “I’m sorry but I don’t agree with you. It’s exactly the other way around. I’m so very clever, can speak and all, and therefore I do understand purrfectly well what it’s like outside, even though you never let me out. So it’s not dangerous for me. I know how to stay safe, trust me”.

“No, Misha, there’s no way you’re going to do that!”.

“If you’ll go with me, will you stop panicking?”

“No!!!” – I yelled in frustration – “Why do you have to be so stubborn? I said no, and it means no! It doesn’t change anything if I’ll go with you, because you always do everything to slip out of the leash, even with Mum or Sofi, and I won’t be able to see what you’re doing. You’re not going anywhere and that’s it!” – I was already missing those times when Misha didn’t speak. Now it’ll probably be an endless battle. What a sheer luck that he can’t open doors! Or can he? – “Plus, Misha, I can’t go with you alone because I can’t get around outside by myself, so we’d both be almost equally clueless. You know we have a river on our backyard so we could both end up in there.”

” You’re a liar! You said you want to make me happy but now when I want to do something that makes me happy you won’t let me. I’m not clueless. I could be your guide cat.” – he giggled.

“I would never think you could be so stupid.” – I mumbled, feeling like tossing him inside the wardrobe and not letting out for the next few hours.

“This is very offensive. Mila, why can’t you give me just one chance. One little chance. We’ll just go out for a little while. I’ll be really careful. I won’t slip out of the leash, if you won’t keep it too tight, and I’ll make sure we don’t fall into the river or anywhere else. And I won’t run away and we’ll come back home soon. We’ll just go for a little walk. Wouldn’t you like to go for a walk with your little Misha. If you really want, we can stay here in the backyard or in the garden, but we could also go out on the streets, why not? I know how to deal with cars. Please, Mila, give me just one chance”.

“You had many chances before, don’t you remember? We let you out but you’d always try to run away or cry all the time that you want out again”.

“I won’t cry at all after we go this time, I promise. I really, really promise. You wouldn’t want to bet with me, because I will win it and you’ll have to get me 50 litres of whipped cream.” – his typical Russian blue smile widened. –

“I’m not going to bet with you, nor am I going anywhere with you. You’re crazy”.

“Okay, suit yourself. I just wanted to be nice. But if you don’t want to be nice, I’ll just go on my own and I’ll come back when I want.” – and with this, he ran to the door and was just about to jump on the handle.

“No!!!” – I shrieked, and ran after him, took him in my arms and shook firmly a few times, which he definitely didn’t like.

“So what?” – he asked, when I finally put him on the floor. – “Are you going with me or not?”.

“I guess I have no choice, but be sure that this is the last walk in your whole life.”

“Yaaaay! Thank you, Mila! I knew you’re cooler than that. You’ll see it’ll be a lot of fun” –

I was full of doubts, but I got out Misha’s leash and out we went. Jocky went all bonkers seeing Misha, and Misha did let him jump all over him for a while, but after some time his patience was exhausted and he nudged him gently but firmly away with his paw.

“Excuse me, sir Jocky. I like you a lot, but I have more important things on my mind at this moment. WHere shall we go, Mila?”

“Dunno, it’s your freaking trip, you say.” – I said, feeling sort of as if I suddenly found myself right in the middle of some strange fairytale world a la Alice in WOnderland.

– “We’ll hang around here for a while, then” – said Misha confidently.

I had to admit it to him that so far he indeed was very well-mannered, didn’t ran out frenziedly or stand in one place full of fear as he usually did when we let him out, didn’t try to slip out of the leash and kept close to me, moreover, if there has ever been something like a guide cat, I believe he could be viewed as an example for what a guide cat should be and how it should behave, and, although I have no personal experience with guide dogs, dare I say he exceeded even them, as I didn’t have to give him any commands, and of course he was also able to talk. Though on the other hand I’m not sure if a manipulative cat who does exactly what he wants no matter what it takes could be the kind of a service animal most people would want.

Finally, we came to the garden and Misha decided we’ll spend some time here.

“We’ll just lie down on this purrfectly fresh grass, I’ll have some of it as I’m sure it’s great fur getting rid of hairballs, and we’ll have a cuddle, just as you always like. Doesn’t that sound nice? I won’t run away I promise.”

And so we did. Misha enjoyed the fresh grass and rolled around in it and nibbled on it. When he had enough grass in his tummy, and decided that he smells grassy enough, we just laid next to each other in silence, Misha taking in all the new smells, and I wondering about the whole surreal situation I’ve found myself in, and how long it will take me to go completely crazy.

“If you can jump on handles and go out whenever you want, why didn’t you do that earlier, for example when you wanted to the toilet today?” – I asked after a while.

“Cats never do such spectacular things when there’s no absolutely urgent need. And besides, I cannot jump on handles. You guys weren’t kind enough to put your handles low enough fur me to reach, nor was anyone willing to teach me how to open the door, I’m not THAT clever. I only wanted to scare you so that you’d go with me.”

– “You bloody manipulator!” – was the only thing I was able to say.

“Why do you insult me?” – he asked in a calm, innocent voice. – “I only wanted to have an adventure”. But never mind, I’ll furgive you. Oh look, there’s a butterfly, yay! I’ll catch it fur ya! What a beautiful butterfly!”

“No, Misha, leave it alone!”

“But why? It’s the last walk in my life and I’ve never propurly caught a mouse or a bird or an insect. DO you want me to feel like a total failure in life? That certainly won’t make me feel happy.”

Misha caught the butterfly in a matter of seconds, all the while making sweet, little feline sounds, as he always does when “playing” with little animals.

“Here’s my gift fur you, Mila. A very beautiful butterfly. I killed it myself.”

“Am I supposed to eat it or what?” – I asked, the surreal, grotesque feeling growing with every minute.

“Oh, you can’t even appreciate a heartfelt gift. I’ll eat it then.”

“Let’s hit the streets now. I need to get some new snacks for myself.” – he said after his little brunch.

I think I felt too dazed to refuse him any longer, or too exhausted by all the events of this short day, but whatever the reason, I followed him. We went out the gate and on the streets. Misha truly amazed me with his ability to navigate in the town, even as little as ours, with not very much traffic.

“Do you purrhaps know if there are any pet shops in the area?” – he asked.

“Yeah, there is one.” – I gave him the street. – “It’s quite close to us, but I don’t know where exactly, you’d have to figure that out for yourself somehow”.

“Okay, no worries, I will. Misha Hhrrru? can deal with any situation like a pro.”

“Excuse me, ma’am. – a well-dressed, tall, elderly lady with a grotesquely big hat and very-high-heel shoes, was passing us, and as it seemed, Misha decided to ask her about the pet shop. I froze. What will she think? Will she actually hear him?

The woman gasped, her eyes widening in horror, and pressed her hand to the chest.

“Jesus! Someone help me! A cat… a cat… This cat can speak…”

“Yes, you’re right, I’m a cat. My name is Misha. Nice to meet you. You don’t have to be afraid of me. I’m a nice and friendly kitty, I like people. I understand you, because I used to be afraid of everything too. Only today I decided not to be. Now I’m not afraid of anything. What do you need help with.”

“H…h…heeeelp! I think I’m going mad. And my heart… my heart… – she whizzed –

“Oh no, what’s wrong with your heart. Mila says I can heal people. I can’t promise anything, but purrhaps I can heal you…?” – but before Misha could end his friendly monologue, I dragged him in the opposite direction and we ran away, as quickly as possible. Misha realised it’s indeed not safe for him to stay there, as more and more people were gathering around the woman, looking at her and at us. Seeing us running away though, the woman suddenly regained some of her vital energy and started yelling:

“It’s hers!!! It’s this girl’s cat! THey’re running! Someone catch them! She’s making pranks on poor, elderly people!” –

“Come on” – I heard a little voice behind me – “I live right here, come with me, quick.” – a little girl, perhaps 9- or 10-year-old, was smiling at us.

We ran after her into her gate, which she closed behind us. We all sat at the stairs of her house. She giggled.

“Your cat is beautiful. How did you make that old bag believe he can speak?”

” Thank you for saying I’m beautiful. I can speak, every cat can.”

“Hahaha, that was really funny. How can I also make my cat speak?”

“You can’t make him. He must want himself. I am Misha, nice to meet you.”

“No, but seriously. How did you make your cat speak?”

“Seriously, I didn’t make him. He can speak for himself. He started today.”

She thought for a minute.

“Really? This is strange. But I want to believe it’s true so I guess I will.”

Soon, a man came out of the house.

“Nela? What have you been doing there for so long?” – he came closer – “Oh, good morning.” – he said to me – “What a beautiful cat. I am Nela’s dad.”

“I’m Emilia, and this is Misha”. – I said, nudging Misha to tell him not to say anything, which he understood. I really wasn’t up to another conversation about how I make my cat speak.

“Please do come in. Nela, you should have invited your guests inside.”

“Oh, I’m sorry, but I think we have to go now.” – I said – “Misha only came to visit Nela for a moment.”

“Well, okay then. But I hope you visit us some time soon in the future again.” – said Nela’s dad, visibly surprised that we weren’t going to stay for longer.

“What a pity you can’t stay for a while” – said Nela when her father disappeared into the house. – “I really love Misha. And perhaps my cat would learn to speak from him. I think it’s safe now so you can go”.

“Oh but wait!” – Misha called when Nela was about to go inside her house. – “I have a very important question.”

“What is it?”

“Do you know where is the nearest pet shop?”

“Emm… not really… I’ve been there once with my parents but I don’t know where exactly it is. But I can ask dad.”

“Oh no, there’s no need for that” – I said –

We said goodbye quickly and went in search of the pet shop. Misha decided to go back to the same street, as he was sure the fuss was already over. Nela had hid us very successfully, and it seemed like no one cared overly about the old lady’s revelations about a talking cat, perhaps apart fromm a bunch of people who could hear Misha for themselves. The street was actually empty. Or so we thought, until, seemingly out of nowhere, the old lady appeared in front of us.

“Oh yes, I knew you’d be back, scaring to death innocent, dignified older people and making fun of them with your possessed cat.” – she said to me.

“I’m not…” – Misha tried to defend himself, but I tightened the leash on him hard enough that he knew he has to stay quiet.

“I’m sorry if my cat scared you. I’m sure he didn’t mean to”.

“You are sorry! My only hope is that you will not do it ever again!”

“No, of course I won’t. We weren’t making fun of anyone. My cat can speak, but he’s not possessed or anything, and he’s not bad to people”.

“Of course he can’t speak, and if he can, there must be something wrong with him. Cats do not speak”.

“But I’m a guide cat!” – Misha couldn’t hold himself back anymore.

“What?!” – the old lady raised her eyebrows.

“I’m her guide cat.” – Misha repeated. – “You know about guide dogs, don’t you? How they help blind people to get around?”

“Oh yes, I know. My friend’s ex-colleague’s daughter’s daughter is blind and has a guide dog, and I watched a documentary about blind people years ago.” – she said, apparently forgetting she was talking to a cat –

“So I’m like a guide dog, only I’m a cat.”

“Oh, I didn’t know there were guide cats!”

“So, you see now, ma’am, don’t you, that I have to be able to speak. I have to tell her that it’s safe to cross the street, or ask people for directions when even I don’t know where to go.”

“Oh yes, now it’s a completely different matter. I’m sorry I was so unpleasant, poor girl, I didn’t know she was blind, God bless her.”

And with that, along with a dozen others maudlin comments like this, she wanted to leave, but Misha stopped her:

“Excuse me, ma’am, I have a very important question. Do you know where is the nearest pet shop? Even a guide cat deserves a treat once in a while, right?”.

“Oh yes, I know. Turn left, then right, and then left on the crossing, and you’ll see the pet shop first thing on your right.”

“Thank you.”

When we were sure she has left, we started laughing our guts out.

“Misha, you’re a genius!” – I uttered, when I finally was able to speak. –

“Thank you, Mila, but I already knew that. Honestly I didn’t expect her to be this naive. Now, let’s finally go to that pet shop, I’m really tired of all that peopling.”

* * * * *

“Bibiel!!! Biiiiiibieeeeeeeel!” – Sofi yelled so loud that she would wake up all the dead people on the cemetery.

“What do you want?” – I asked sleepily.

“Wake up. You’re sleeping and sleeping and sleeping. It’s 2 PM. Mum told me to wake you up and ask if you want to go with us to the beach.”

I sat up and rubbed my eyes. Misha sneaked in quietly and rubbed his head on my hand in a playful way. The memories of the last hour floated back into my brain. So it was only a dream… or was it?

Testing, testing!…

Hey people! πŸ™‚
I have news of the year for you! Bibiel’s got an iPhone. πŸ˜„
It’s been hanging in the air for a while already, because Zofijka got an iPhone recently too, and as my ten-year-old Nokia wasn’t getting any younger, I had to think about something new at some point. You may already know that I’d been very reluctant to have a smartphone because of my coordination and orientation difficulties and that it felt sort of surreal for me that I’d ever be able to use a touch screen, and all my attempts on other people’s phones in the past were miserable, so I was always joking that I’m sticking to Nokia due to my undying loyalty to Finland.
It’s been one heck of a change, as you can imagine, but somehow I’ve been able to keep my stress and rumination at healthy levels so far, and am even a little bit excited about the thing. I have a whole lot of things to get used to and would definitely be lost if not my Bluetooth keyboard, as I can do barely anything on the screen, and so far struggle a lot even with the keyboard, but hopefully it’s just the matter of getting used to everything.
I just wanted to let you know about it and test how the email thing works, as I’ve just set up my emails in the Mail app and am sending this via email. This is actually my second attempt as something didn’t work out the whole time. So far I’m pretty sure it’s not going to become my default way of blogging, it’s really arduous.

Question of the day.

Hi people! πŸ™‚

What are your opinions on zoos?

My answer:

I’ve never been a huge fan, probably mostly because the animals I like the most and have the strongest connection to are the ones that are used to people and live with them, especially cats and horses. Besides, it feels a little boring to me since I can’t really even engage with the animals in any meaningful way, as you can’t touch them or anything. I remember when I went to the zoo for the first time when I was 5, it was shortly after I went to the boarding school (or rather nursery), and by then my parents would visit me every weekend there for a year or so. And on one of those weekends we went to the zoo which wasn’t very far away from the school, and I was so excited, because I loved bears at that time, and when Mum told me some time ahead that we’ll be going to the zoo, I was telling everyone that I’ll take some honey and will be feeding the bears honey with a spoon. πŸ˜€ But in the end I guess there actually were no bears, or at least I can’t recall that haha. it feels a bit like a museum or a gallery to me, and these kinds of places usually aren’t that fascinating to me, often even when the theme of it is interesting. I guess I’ll learn more from reading about it than wandering aimlessly around. Especially that I have some marvellous talent for nearly fainting in entertainment places like that. I’ve never actually passed out but I could feel really weak and drained and pretty close to it anyway. Probably because you typically visit such places in late spring/summer when it’s hot, and you often have to stand in one place there for a longer period, then move a few metres to another place where there is another object/animal/whatever and either listen and learn about it when you’re at a school trip or with a guide or something, or just wait while everyone else is looking at it if you’re only with sighted people, rather than just walk all the time or sit, and heat plus long standing in place makes my BP drop. So it feels very unpleasant, stressful and darws too much bad attention for my liking. Also, despite I am not some extreme and crazy animal rights/environment advocate or someone who would want to humanise animals in a serious way, I always find it sad when I happen to be at the zoo that all those poor animals have to be there and had to lose their freedom just because of our human whims because WE fancy seeing wild animals in real life. Sort of similar to circus in a way, both because it’s something I can’t really engage in, and because it involves wild animals only that circus seems generally more cruel and unethical than zoo, and the whole circus thing doesn’t really make much sense to me, I mean I can’t quite get it what’s exactly so funny about it, it seems a little primitive kind of entertainment to me but maybe I’m just either too stiff and lacking humour or it’s beyond my cognitive abilities to get it. πŸ˜€ I know that the zoo is a form of education so that people can actually see the animals, but I’m not sure if we necessarily have to see something face to face to be able to learn basic things about it unless we are scientists. I also understand that sometimes it can be life-saving for some endangered species to live in the zoo rather than in their natural habitat which may not be a safe place, but I guess those are exceptional cases and zoos don’t consist of only such animals but also such that would be perfectly fine in the wild.

I don’t have any huge dislike for zoos or am not against them in general, but they are just not really my thing, I guess.

How about you? πŸ™‚

Question of the day (23rd May).

Hey people! πŸ™‚

What’s the most bored you’ve ever been?

My answer:

I am generally not someone to get easily bored. There is that sort of saying that intelligent people don’t get bored. And, while I don’t think it’s very true and exact, it does make a good point. When you can rely on your brain to provide you entertainment rather than wait for the right external circumstances, you have it much easier and more interesting. But I believe that there are such situations that you really can’t not get bored in, regardless of your IQ. The imagination and your thoughts alone can be a good way to occupy yourself, but if it’s the only thing you are left with and are unable to do much more, that may not be sufficient for a longer period of time. The situations I usually get most bored in are in big gatherings of people, that is. Usually I feel a lot of anxiety when socialising, especially in large groups of people, but sometimes it happens that the anxiety lowers a bit with time and then boredom creeps in. This often happens to me at all sorts of bigger family gatherings where I don’t feel so awfully anxious that it would be the only thing that would be constantly on my mind. It does happen to me sometimes that I feel both highly anxious and very bored at the same time and that’s a very awful combination and feels strange in the brain, like, it’s hard to deal with it when you’re both over- and understimulated in different ways, right? πŸ˜€ I tend to feel bored in such big groups of people because I usually end up being the passive observer rather than the one actually participating in what’s happening. I do love observing people very much, analysing how they behave, trying to figure out what they are thinking about or feeling etc. But if I’m supposed to be around a lot of people for some longer time, you can’t do just it all the time. As it usually happens, most of the things they talk about aren’t overly interesting to me, assuming I have any actual clue about what/whom they are talking about, and having to sit in one place for hours just taking in a lot of meaningless nonsense isn’t one of my most favourite activities. Sometimes I go into my Brainworld and daydream or something but you have to be careful with such things in case you float too far away. πŸ˜€ I like my extended family and have mostly normal or good relationships with them apart from some exceptions who won’t even admit openly that they have a problem with me but rather let me know via someone else, but I don’t feel a strong sense of belonging with them, which I think is part of why things are the way they are. I often have no idea what they are talking about, or just am not interested/knowledgeable in the topic so I have little to say usually, even without the anxiety at play.

I can also get massively bored watching movies, mostly because I can’t focus on them for some reason, even when they are with audiodescription and interesting to me, I just have a weird problem with movies. πŸ˜€

But I think the time when I was most bored ever would have to be when I was 10 and recovering from the Achilles tendon surgery. The whole thing was quite scary, not because the surgery was scary or complicated or anything but because I think I wasn’t ready for what was coming next, no one has really told me. Or otherwise I don’t know what made it so scary, anyway I responded to it very badly. As I wrote on here earlier, after the surgery I had to have casts on both legs for 6 weeks and then physical therapy, the amount of which depends on a particular case and for me it was about a month I guess. My surgeon was slightly overzealous, because apparently my casts were waaay bigger than they needed to be, I had them from my thighs all the way down to my feet so that only my toes stuck out and I was unable to bend my knees so my legs always had to be stretched out (I guess that’s why now I always sit with my knees bent or even legs curled up whenever possible πŸ˜€ ). So basically I couldn’t walk at all and that was quite a surprise, I somehow didn’t think it would be like that. It sent me into a freakout because right before my surgery, I was put in the room with a much older girl about whom I’ve also heard that she had contracted Achilles tendons in her both legs and that she was after a few surgeries already and actually could barely move or do anything on her own. I only learned much much later from my Dad that she had an accident as a very small child and the Achilles tendons were just one small issue of the multiple ones she had and her mum had told him that that time she was there also to correct her tendons. But you know how kids can think, I was pretty sure that I was going to be a similar case to her for some reason and would have to be fed and all that. At the same time, it was a hectic time for my family, because Zofijka was only a few months old, and we’ve only just mmoved houses, and the house we were living in was still not fully arranged, my Mum was running around madly getting all sorts of stuff for it and taking care of Zofijka, and helping me with showering and such. I didn’t have the Internet yet, not even a computer, and since I didn’t have any other transport mode other than someone carrying me, I spent most of the time in my room. I was bored like shit and just as my muscles were stagnating, so was my brain, and I was awfully sensory deprived or something, which sent me spiraling down into ANxietyland, and I had all sorts of weird anxieties and other intense stuff like that. But in a way the boredom was even worse than the anxiety. I could read some of the modest selection of the books or kids magazines in Braille that I owned or borrowed from the library, if someone would get me something, as my bookshelves were quite some distance from my bed, and while I could get to the lower shelves on butt, I could not climb back up on to the bed with my ultra heavy legs. πŸ˜€ So I would usually ask someone to give me something to read, but most of the books and magazines I had were not signed in normal print so no one knew what it was, so I ended up reading the same things over and over again. I was in the integration school at the time so my class teacher visited me occasionally and did some school work with me, or sometimes my grandad came when he had time, as it was back when we lived in the country with all my Mum’s family, and sometimes Mum brought Zofijka to me. What helped me the most in those difficult times was Polish Radio Bis (BIS standing for Very Different Station) which was a public radio station mostly addressed to the youth that existed back then, which played a variety of music from genres like rock, alternative, reggae, folk, hip-hop, electronic etc. generally the quirkier the better, and had some educational and cultural programmes, including some that focused on teaching languages, and I was in love with Polish Radio Bis at the time, and even in the word bis used in whatever context. Radio BIS doesn’t exist any longer, but I still miss it and can’t get over it! πŸ˜€ And I still love the word bis. There is Polish Radio Programme 4 that has a very similar formula but, meh, it’s not the same at all. There are different people, different music, different programmes, even if some of the things stayed the same, and I don’t really like them half as much as I did BIS. Anyways, during my recovery from the surgery I even called Polish Radio BIS a couple times, but wasn’t on air, I just chatted to the people in there and wanted to tell them how much I like Radio BIS (read: how obsessed I was with it, but they didn’t seem to mind my obsession and some were very amused by it).

Generally though I had nothing to do all days, and all nights, too, as my sleep cycle was, quite naturally, ALL over the place. I remember very vividly how a couple days before my surgery I talked to my grandad about it and he told me something like that my legs will need to recover and they’ll be in stagnation. I didn’t know what stagnation was, so he explained to me that if I was left alone in a room where no one would come and it would be totally silent, I wouldn’t have any books, music, radio or any other contact with the world, this would be stagnation and I would fall into it easily in such circumstances. And so it was going to be the same with my legs. And then when I was after the surgery already I was thinking that, although I wasn’t completely cut off from the world, his example was so eerily accurate, since it weren’t just my feet that were stagnating, but my brain as well. The weirdest thing about all that is that the surgery actually didn’t work out, so it was rather pointless in the end. πŸ˜€

So yeah, the time I was most bored was probably that.

How about you? πŸ™‚