Question of the day.

Would you ever send your kids to boarding school?

My answer:

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

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

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

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

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

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

You? πŸ™‚

Question of the day.

What do you do for exercise/recreation?

My answer:

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

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

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

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

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

How about you? πŸ™‚

Question of the day.

Are you an early riser?

My answer:

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

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

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

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

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

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

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

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

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

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

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

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

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

Okay, now over to you. πŸ™‚

Question of the day.

How clean is your house/appartment right now?

My answer:

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

How about you? πŸ™‚

Question of the day.

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

My answer:

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

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

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

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

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

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

Question of the day.

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

My answer:

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

You? πŸ™‚

Question of the day.

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

My answer:

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

How about you? πŸ™‚

Ten Things of Thankful.

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

Ten Things of Thankful – #TToT –

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

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

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

 

My favourite place.

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

“One place I always feel happy is…”

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

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

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

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

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

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

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

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

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

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

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

People and things I’m grateful for.

I’d like to write some journaling prompt-inspired post, so I picked a prompt from Listify by Marina Greenway again, and it is the following:

Β  Β People And Things I’m Grateful For

In addition to the wonderful people in your life, make room to be grateful for the other special things as well. The talents you were gifted with, your home that gives shelter and comfort, a text from your best friend. There are things that we unconsciously appreciate each day. Wrack your brain and list as many as you can think of. By the way, make sure you are on your list too.

Now, you may remember a post I wrote last year about

expressing gratitude and “self-gratitude”

which was also based on a prompt from Marina Greenway, and if you read it you know that I’m not buying the self-gratitude concept and don’t really understand it, or even if it is a thing I don’t understand what the difference would be between it and what’s commonly known as self-care/self-love. I also don’t get the being grateful for yourself notion, so I won’t be including myself on the list below. I could be grateful for my life, or my parents for giving it to me or towards God for creating me, but for myself, I just don’t see the logic in here.

Here’s the list, in semi-random order.Just so you know, it’ll of course be rather long, since it’s all about coming up with as many people and things as I can.

  • Β Β  I’m grateful that God loves me. Also that I was raised in Christian faith and knew about God since the very beginning, and even though I later lost touch with Him, I have reconverted, and for all the people who help me develop my faith.
  • Β Β  I’m grateful for my life. I rarely actually feel genuinely grateful for my life and the fact that I am alive, because I’m not all that strongly attached to life and passive suicidal thoughts are something that is pretty much always there in the background for me, nevertheless it is worth appreciating and all the good things that have happened to me during my life so far. Also that I’m still alive despite I used to be actively suicidal in the past and that I’ve learnt to live with the passive suicidal thoughts.
  • That I’m Polish and live in Poland. I just like being Polish and I love the Polish language, and while you could always think about all the places where the grass is greener, I’m quite happy where I am and that my country is doing relatively well in the grand scheme of things – we are free, doing pretty well economically given the world situation, developing very fast etc. –
  • My parents, that they are loving and caring and that I have reasonably good relationships with them, especially with Mum, and that they are still alive.
  • My siblings, and especially my good relationship with Sofi and all the fun times we have together and that we get along despite a lot of differences.
  • Misha, and all the emotional support he gives me, that he makes me feel happier, safe, loved, useful and that he makes my life worth living, for his friendship and for how beautiful he is. Also that now he’s lived 5 years with us.
  • My online friends and the support and sense of community I get from interacting with them, and how meeting people who are like-minded with me but all in different ways makes me develop.
  • Β Β  All of my fazas, especially the major ones. That is, both the phenomenon of faza and my faza subjects as individuals that they exist. All the happy feelings that I get thanks to my fazas, how it helps me to cope with life, grow, develop, feel inspired and motivated. How it helps me with my languages. Also my faza subjects’ music and how it resonates with me. And, most of all, my current faza peak on Jacob!
  • Jocky and his neverending, infectious, child-like enthusiasm and happiness.
  • My other family and that they care, sometimes way too much, and all the good things they did to me and everything they helped me with, like when I was at school a lot of my extended family members would go with Mum to take me from school when Dad couldn’t and Mum didn’t feel safe or able to drive herself so far from home for some reason.
  • My languages that they exist and that I’m able to learn them or just be in touch with them, and especially the minority ones that are still alive, that they are alive despite it being a struggle. And that I have some sort of a knack for picking up the phonetics as it makes it a lot easier to learn languages. And that there are accessible places online where you can learn languages being blind. All the speakers of the extincting languages that I love, that they also keep them alive, and especially those who consciously care about keeping them alive and are proactive about this.
  • All the technology I use, whether it is assistive/specialised or mainstream, as it all helps me to do almost everything in life. My computer, my phone and my screenreaders on both, all the assistive apps, my blog and all the other places where I can stay in touch with people, my PlexTalk and Braille-Sense thanks to which I can read, and listen to music, and also that I can use my Braille-Sense in conjunction with my phone which makes it a lot easier. That I can work thanks to technology, and develop my interests. That there are dedicated people who make these things. That there are so many accessible apps and websites even if a lot aren’t, and that there are people who care about accessibility.
  • Β Β  Speaking of both language and assistive technology – people who create speech synthesis in small languages, which helps them to thrive and helps people like me with learning them. –
  • That I’m secure financially at the moment and have a job, as well as flexible work hours and that it’s not too stressful or anything, also that I am able to get disability benefits.
  • That I’m generally healthy.
  • That I haven’t had a migraine in over two weeks (this is really noteworthy because for the last few months I’d been having them at least once a week, I wonder whether it also has anything to do with a peak because the start of my faza coincides with the break in my migraines.
  • My home, that I have a place to live and that I actually feel at home here. And my room and that it is so great. That I don’t have to move around all the time anymore and have more of a sense of belonging.
  • All the beautiful things in the world.
  • Good sleep whenever I get it, and all my interesting, long and vivid dreams, and that I have a very comfy bed. Also all the nights when I cannot sleep because then I’m usually more creative so it has its benefits too.
  • Good food.
  • My synaesthesias, and other weird but fun things like that in my brain that make my life more interesting.
  • Great books.
  • All the great music in the world.
  • That I can blog and journal.
  • My sense of humour.
  • My imagination.
  • My brains.
  • My empathy and sensitivity, although it can also be a pain sometimes, just like the imagination.
  • My anti-anxiety medication.
  • Warm, relaxing baths.
  • My fabulous B&O headphones.
  • That I was able to learn how to use the iPhone.
  • My additional Bluetooth keyboard that I use with my iPhone when i can’t use my Braille-Sense.
  • My gem stones.
  • All the caring people in the world in general.
  • And all the people in the world who are able to think critically and independently.
  • That I haven’t vomited in over 10 years (for those who don’t know I am emetophobic which means I’m scared of anything to do with vomit).
  • That I don’t have any neurodegenerative disease and my brain is working well.
  • My relationships with the purgatory souls that I pray for, and the help from them that I experience.
  • That I’ve been doing quite well mentally lately (in no small part due to the aforementioned peak).
  • BitLife, and that today I won almost three million pounds in jackpot in BitLife and found a 10-carat diamond in my BitLife attic (which is a heirloom) so now I’m living the dream. πŸ˜€ That just shows BitLife isn’t really a real life simulator, but oh well. The first time I inherited an heirloom worth over a million dollars out of nowhere (it surely weren’t my BitLife parents who owned it πŸ˜€ ) and told my Mum about it, she said we should move there permanently.
  • Β Β  That I’ve got lots of Toffifee for my birthday.
  • That my cousin is considering the name Jacek for the baby she’s expecting (thanks to ME, of course! πŸ˜€ ) I somehow doubt they’ll actually use it, but I can hope, right?

That’s all I could come up with, hopefully I didn’t forget anyone or anything important.

What would your list look like? Let me know, or write your own post if you feel like it, and pingback to my post or comment with the link so I can read it! πŸ™‚

 

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

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

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

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

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

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

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

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

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

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

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

Question of the day.

If you could change three things about your country, what would you change?

My answer:

While I think that our current government (United Right) is way better than what we had for years with the previous party (Civic Platform) which was in power, it could still be a lot better and there is lots of room for improvement, and I feel quite sad that for now, there doesn’t seem to be any better option. Lately in particular, I’ve noticed that our foreign politics/diplomacy is totally crap and if only I could, I’d change that asap, somehow. I don’t know if it’s that we have no luck for ministers of foreign affairs or is this seriously intended but it’s really bad, if not ridiculous sometimes.

Another thing I would change is I’d improve the situation of disabled people, but in particular of those who are mentally ill or have some rare diseases. Not that other disabilities don’t need help or it’s less important or anything like that, as a blind person I know that there is a lot that could be done to the blind community, which I’m sure is true of any country, and other disabled communities also have their often more than fair share of problems, but also being mentally ill I feel like the mentally ill community has much less support, and there’s an awful lack of awareness. I’ve heard that there’s especially some huge problem with children with mental health issues and that they frequently don’t get the level of healthcare they need. I once had a conversation with someone – perhaps even here in the blogosphere, can’t remember –
about personality disorders and how they’re stigmatised. And I said that here in Poland they aren’t even stigmatised like they are in the US, because people don’t know enough about them to form some strong enough stereotypes or something. Yes, it is also a thing here that when doctors don’t know what to diagnose someone with, and a patient is somewhat “difficult”, they’ll happily go with BPD, it is overdiagnosed, but an average person who hasn’t had much to do with the field of mental health in their life won’t have much of an idea about what borderline personality disorder is in practice, unless they know someone with it and know they have such a diagnosis. People here don’t say they’re so “OCD”, because while OCD is certainly not unheard of, people aren’t familiar with it enough to just use the term casually like Americans do for example. Stigma is a huge problem, but I personally feel like lack of actual awareness is a bigger problem. Most people know something about mental health and mental illnesses in theory, but in practice not much. There aren’t a lot of resources for mentally ill people, online for example. Or communities, whether offline or online where people could receive some support, unless they’re in psychiatric institutions, or there’s also no support for their families. There are charities, or individuals who are trying to do something on their own, but their outreach is often limited so there’s only so much they can do. It would be great if there was more initiative higher up.

There even seems to be some lack of awareness among professionals, or so it seems to me as a mentally ill person and as a keen observer of people. Since I’ve joined Carol Anne’s of Therapy Bits email support group for people with DID, as a supporter, I’ve been wondering and trying to do some, any, research about the situation of people with dissociative identity disorder here in Poland. There are some basically informative pages on health-related websites geared at patients, some a little more indepth but theoretical articles on psychology-related blogs, but other than that… nothing really. The term “split identity/self” is familiar to people and some people say they have a split self when they are of two minds or feel kind of internally conflicted. When I dug deeper I found some trauma specialists touching very briefly on DID in their works or during lectures but I couldn’t even find someone who would specialise in this. Later on, I remember I found some sort of a map or something if I remember correctly, I’m not good with maps and diagrams but generally it was about in which countries this disorder is diagnosed and I did manage to figure out that Poland wasn’t on there. Later yet, I briefly mentioned it to my last therapist that I am part of such a mailing list and trying to support people somehow, and she immediately was all like: “But you know it’s not a real thing, DID? It’s only a sort of psychosis?” I said that it doesn’t seem so to me, but it’s her who is the professional here after all so she should know better, but I didn’t want to get into a discussion on this during my therapy session which should be about me, not DID. That was really sad and kind of upsetting to hear to me though.

Our country isn’t free from traumatic events occurring to little children. And so I feel for all those Poles who do have or might have DID and either don’t know about it or no one really cares, and I’d like it to be different.

Speaking about mental health that would also include the autistic/other neurodivergent people and making things easier for them in our society, especially adults and more “high functioning” children. I’m not autistic myself as you probably know but as you may also know I do have some connection to the autism world, having been assessed for it twice and “accused” of having it many more times, and have a bit of an idea what it looks like here with it. Similarly I feel like we need more awareness of rare diseases, as much as possible given that they’re rare, as I know a lot of rare disease patients here struggle with access to their medications and funding for them.

And lastly, culture, yay! We have such great, Polish culture. So many Polish artists who are undiscovered and often very poor. I’m not talking celebrities, who often got famous because their mummies or daddies had just the right views during the communist period, which helped them reach the fame in some area, or just get enough money, and then their children inherited the fame along with the surname, even if they aren’t all that talented at anything in particular. I am talking actually talented people who don’t get to promote themselves anywhere significant enough. One thing our government really did wrong was with the public media. I’d like to believe their intentions were originally good indeed, as they wanted, and still do, to repolonise our media (because the majority of media in Poland are owned by foreign companies). They concentrated their efforts on the public media at first, pretty much right away after they won the Parliament Election, and changed people in charge of Polish Television and Polish Radio. That’s pretty much all they did really, only now they are kinda, sorta trying to do more and repolonise the press, and it’s been five years since that election if I’m counting right. Anyway, what they did back then wasn’t really a gamechanger at all, because the people they chose to manage the public media are very incompetent for their roles, as it seems. Especially the chairman of TVP (Polish Television) has earned himself a very bad reputation, both from those on the left, and on the right. He’s a real king of cringe to put it shortly, but what saddens me the most is that his name is Jacek, and I really like Jaceks, and he is making a bad reputation for all the cool Jaceks out there, I’m afriaid. 😦 Well no, I’m just kidding obviously, I’m sure a cool Jacek can defend himself, but it’s just sad to see such a cringey guy and know his name is Jacek… The King of Cringe is particularly well-known for supporting disco polo artists and their music (disco polo is essentialy Polish disco, very cringey and trashy). One disco polo artist who is quite well-liked there in TVP once tweeted that disco polo is like new folk music. That Polish composers like Chopin or Moniuszko were once strongly inspired by folk music, so maybe there will be a time when future Polish composers will be inspired by disco polo. You can imagine that really made me – as a folklorophile – go nuts. Anyway, you can hardly see any higher culture in TVP now.

Now that we have Covid and artists all around the world have financial problems, I’ve heard that for example our Polish painters, or independent musicians, have been struggling a lot more than before. Meanwhile, our Minister of Culture and National Heritage had magnanimously decided to help out the artists financially via a culture support programme. It was quite controversial, because some of the beneficiaries were meant to receive absolutely huge amounts of money, and all of them were the famous celebrities, who, totally in my own opinion, aren’t really all that talented in their area as their fame, and even more so the compensations they were meant to get, would suggest. (There were four millions Polish zlotys in total in the whole support programme). People got ragin’, one singer guy – Kazik – who is quite known for strong views even said that he doesn’t want their stolen money, and the Ministry decided to “verify” the list of the beneficiaries. Don’t you verify such things in the first place before anything else?

Aside from the unfairness of it all on average people, which another huge problem, does it really have to be so that it’s somehow decided at the top who should be famous/popular or not? Whose music we are supposed to like and listen to? Can’t it be just people who will choose what they like, rather than have shit shoved down their mouth and be told that they find it delicious? I think there should be more equal chances for artists to emerge, more support in times like these for those who are independent, either because they want to or because there isn’t any other option for them really. I want to hear more diverse Polish music, more young Polish musicians. I want to hear people talk about more ACTUALLY good Polish films. Or Polish visual artists who are actually alive and doing quality stuff. I want to hear about contemporary Polish composers, not because I had to hunt for their music myself, but in the media, or from other people (and for them not necessarily to be composers influenced by disco polo :D). I want a properly Polish talent show on the telly, I mean, we have The Voice (of Poland) and the like, but these are all practically foreign, which is not a bad thing in itself, but why can’t we have one of our own? It would be cool if the contestants, if they’d be making music, could share their own music rather than only cover what someone has already created which is the most common formula of such shows although I do realise there are exceptions, and then actually have some support, whether financial or in whatever way it’s needed for such newly emerged people, that would help them exist in their field in a substantial way, not just for a while after they release their debut album. It would also have to be something good quality, not necessarily somehow super sophisticated because it should be digestible for an average person but something where you could actually find some objectively aesthetically pleasing art of some sort. So yes, I would love to be able to promote Polish people who are talented in some way, but have some external obstacles which make it difficult for them to show it off in front of their nation more widely.

I know it’s all probably incredibly idealistic if not utopian, but oh well… why not?

So how about you? πŸ™‚ You can dream big if you want like I did. And, aside from the main question: besides those three things you’d like to change about your country, do you like it overall, or do you feel like you’d be better living somewhere else? I definitely do love Poland! πŸ™‚ Just felt like saying it because it was quite a negative post and I didn’t want anyone to think I’m dissatisfied with my country overall, there just always are things that could be better, some a lot better.

Question of the day (28th December).

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

My answer:

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

What is such a thing for you? πŸ™‚

(Do) I have people I trust.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Question of the day (16th December).

What is a miracle that happens every day?

My answer:

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

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

Question of the day (2nd December).

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

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

My answer:

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

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

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

What do you choose? πŸ™‚

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™‚

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™‚