Question of the day.

How do you like your eggs? πŸ™‚

My answer:

I like them both soft-boiled and hard-boiled. They’re not my favourite thing in the world but I do like them and have them for breakfast sometimes. I really dislike fried eggs though, and scrambled as well, plus scrambled eggs are on my emetophobic no-no food list so even if I theoretically liked them, I wouldn’t eat them anyway. I used to eat scrambled eggs years ago before they made it on to my no-no list even though I didn’t really like them, because it’s a deeply ingrained habit of my Dad’s to eat scrambled eggs every Sunday and we all used to do that, also I had them sometimes at nursery. But then I got sick from them once at nursery and since then I don’t even pretend I like them and I don’t know what you’d have to do to make me eat scrambled eggs. πŸ˜€ For some time, as a teenager, when my emetophobia was at its worst, I had a huge problem with eggs and almost anything containing eggs because of salmonella and the like, and it was one of the products with which it really took me quite some time to get back to eating them normally, and I still feel wary in places like restaurants, but what helps is that my grandparents sell eggs – they used to have hens of their own for years but now they get their eggs from somewhere – and we also buy from them, they get them from one source and neither I nor anyone else in my family ever got sick from them. Then again, I’ve never had salmonellosis or a similar thing at all, except from that one short episode with scrambled eggs which I don’t think was due to any bacteria, but that might be just because I’m emetophobic so I’m always cautious. 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™‚

 

If We Were Having Coffee… #WeekendCoffee Share

Oh my, I haven’t done a Weekend Coffee Share in quite some time!

Since the last time I participated, we have a new host, who is

Natalie (thank you so much for hosting πŸ™‚ ).

If you would also like to join in on your own blog, go over to her post, where you’ll find the link-up.

So we can consider this coffee share a bit special, because it was Misha’s birthday on Saturday (he is 5 now and I’m still in a deep shock, especially that it’s apparently 36 in human years, is 36 middle age? :O ), and then it was my birthday on Monday (I’m 24 now in case you’re curious πŸ˜€ ). Also, this is my first coffee share ever since I’ve found my new

faza subject

which I was waiting for to happen for a long time, so I’m now in a nice faza peak, and I think a new faza does deserve a Weekend Coffee Share to be celebrated with, even though I probably won’t be talking much about my faza as such in this post. In case you don’t know but are curious, his name is Jacob Elwy and you can read more

here.

We don’t really have a huge variety of drinks right now, I’ve even run out of kefir, but we do have the usual black coffee and quite a lot of teas, so if you like some interesting teas, especially herbal, you’ll probably be able to find something cool for yourself, or you can bring your own drink and let us know what you’re having or contribute to the coffee share and share with people.

Because it was my birthday, I’ve got loads and loads of candies that I’m happy to share with you all, things like gummy bears or Toffifee or various chocolates. Just about an hour ago, I got some crisps from Olek, so perhaps I can share with you if you ask me very nicely. Sofi claims he must consider me very cool for some reason or something, because she didn’t get anything from him, nor did anyone else, he just bought himself an energy drink and crisps for me, according to her investigation. πŸ˜€ Wow, I feel honoured, wonder what makes me so cool! πŸ˜€ Or if you need something more substantial we have a lot of chicken. Or, again, you can bring something yourself and share with people if you feel like it.

So if everyone has some yummy food and drink and a comfy place, let’s start our coffee share properly, shall we?

If we were having coffee, I’d ask each of you how you’ve been doing…? πŸ™‚

If we were having coffee, I’d tell you that, despite I was having some situational stressors last week and at the beginning of this week (to do with my birthday, which is usually quite a stressor for me and even this year, with the pandemic, I couldn’t escape all the peopling), I’ve been feeling quite well lately mood- and mental health-wise. In fact, I had a lot of peopling to deal with, and yes, it was difficult and overwhelming, and I especially don’t like it around my birthday because then the attention is focused on me way more than normal and I just hate it, it usually makes me feel so overloaded that it happened a few times already that I would end up self-harming on my birthday after having had done it in months and being very proud of it, which was obviously quite disheartening, if nothing else. This time, I’m even more proud that it didn’t happen and despite all the yuckiness and even some really quite nasty situations with my family along the way that I perhaps better won’t be describing here in detail, it was manageable. Misha helped me a lot, and obviously the fact that I’m in a faza peak so everything feels easier, better and what not. Right now I’m having a period and while I’m feeling quite crappy physically, I haven’t have particularly bad PMS symptoms which I often do have. Oh and what some of you may already know, my migraines have mysteriously stopped like three weeks ago, where previously, for the last few months I’d been having at least one per week. I did have a slight tension headache the day before Jack the Ripper aka Jack the Butcher (which is how I affectionately call my period, in case you don’t know) came, but that’s normal and it didn’t make me non-functional. And my Welsh learning is going great. So, yay, good news from Bibiel land!

If we were having coffee, I’d tell you that it’s been frrrreezing this week! Which I’m happy with, except for the fact that it makes it very slippery which is annoying when your balance is shitty to begin with, but I don’t have to go out much now so it’s not a huge problem. It’s also been snowing so much that even Sofi’s fed up with it. I’ve heard that in some regions of Poland it could get as cold as -30 C (-22 F apparently), although I don’t know where exactly. Sounds exciting to me! Well, definitely way better than +30, so I won’t be complaining if it’ll be the case for us, although my Mum is missing spring. Spring is great, but summer not so much for me, so I’m appreciating it when it’s cooler. Misha is totally fascinated with the snow and likes to watch it longingly through the window. Sofi took him outside once and gave him a snow bath. I was worried that, because he doesn’t go out at all normally, he’d get sick or something. Physically he managed it really well (I guess he has this Russian fur for a reason after all), but he seemed not quite his own self and very jittery for the rest of the day and I think he had quite an emotional shock from being let out, even though it wasn’t much longer than a minute.

If we were having coffee, I’d tell you that yesterday, my parents finally bought a camper van. You may or may not know that it’s been my Dad’s life-long dream to have a camper van and he’s been entertaining these visions of himself being in retirement and driving through the world. We’d always taken it with a grain of salt, because he’s the type of dreamer who just gets stuck on the dreaming part, but for some reason doesn’t seem to want to accept it and at the same time will never admit it to himself that he won’t take it any further than dreaming and hoping. Or at least, so we thought. Also he is always very stressed and it just seemed very incongruent with his personality that suddenly he’d be wandering the world with no purpose, spontaneously and with no hurry. That’s something that perhaps my Mum could do – being very spontaneous, impulsive, living in the moment and following her dreams – but she wouldn’t either, because she feels better at home. Also it always made us laugh, because my Dad is a tanker driver, so he is driving all the time, and always whining about it when he has to travel somewhere far, and then he wants to spend even his retirement years driving even further. But, at some point it really came to that Dad started seriously looking for a camper van to buy. Something used and as cheap as possible, of course, but still. It was a huge step forward. We all observed it from a bit of a distance, with a lot of interest but no hopes or anything, because while it sure would be fun to travel in a camper van sometimes, neither of us is so crazy about it as he is, perhaps Sofi a bit.

Then he started actually contacting sellers, travelling to see various vehicles, but it seemed like he had some bad luck with it really and he had several situations where he’d arrange with a seller that he’d come see his camper van at such and such time, and then at the last minute he’d learn that it was sold, or he’d travell the whole country with the rain pouring all the way back and forth just to see something that looked way worse than on the pictures. Sometimes in turn he’d have some really good offers almost right in front of his nose, and would turn them down for no apparent reason, and continued to kill his free time by scrolling through camper vans for sale. We started thinking that he actually indeed does prefer dreaming, and may be afraid of achieving this dream or something. Sofi was a bit disappointed, Mum was a bit condescending, a bit amused but mostly neutral, and I could understand it a bit that now he was so close to achieving this, perhaps he was having second thoughts, for some reason, maybe because now he could also see that he is not suited for the life he was imagining.

And finally, he found some quite a bit more expensive camper van that he really liked, and earlier this week suddenly I hear that they – he and Mum of course – are going by train all the way to Silesia to see a new camper van. At this point, if they were going by train, and not by car or with someone else as another driver, I knew that things have developed seriously, because who would go see something to the other end of a country rising at half past 3 AM to do this, and then go back home with nothing. Even if it would be awful, they’d probably buy it anyway. πŸ˜€ Then I even heard that it was “almost bought”. And, yes, they went to see it yesterday, and bought it properly, and now we have a camper van, and they’re quite satisfied with it. This is quite nice, because with my vestibular problems, any kind of further travelling is a bit of a hassle, but while it’s doable by car with the right strategies, it is much more difficult on the sea and I haven’t even had the courage to try an aeroplane because the mere thought makes me floaty and dizzy, so that was also one of Dad’s crucial arguments when someone was asking him why he wants a camper van so badly – to be able to go abroad more, and to go abroad he thinks he has to go with Bibiel, because Bibiel can speak English and he can’t, and Bibiel won’t go anywhere by plane. – And whenever he’d drink a bit more he’d be giving me elaborate promises of how when he’ll have a camper van we’ll go to all my favourite countries etc. etc. etc. even though I’ve never pressured him for that. So, yeah, that could be fun, even if we don’t actually end up going to my favourite countries, it can still be nice to even go on holidays somewhere closer, and have your own place to sleep in.

Now, your turn. What would you tell me if we were having coffee? 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™‚

Maria Mena – “Not OK”.

Hey people! πŸ™‚

I guess Maria Mena is quite a recognisable artist and not at all quite as obscure as a lot of the music I’m sharing on here, at least I know she’s known in Europe, not sure about the rest of the world, but to me, she’s quite new. I’ve heard her name years ago but never really had a chance to hear more of her music and I guess never thought it would be something for me. But recently I did start to listen to her music and I really like it. Also, because she has also bee dealing with mental illness, she has some songs that tackle this particular topic and I ‘m really glad about it because we need such music. I find this song particularly relatable and I think everyone who struggles with mental health-related issues will, as it’s so common for us to just automatically tell people that we are OK when we’re actually not.

Question of the day.

When was the last time you laughed, and why?

My answer:

Despite having dysthymia and feeling more or less depressed 99% of the time, I do laugh a lot, for all sorts of reasons. Because sometimes it’s the best way of masking that works for me, and because generally even when I feel anything but happy I don’t lose the ability to laugh or even the impulse/desire to laugh, unless when it’s like really reeeally shitty, in fact I think it’s a lot easier than smiling for me because while laughter conveys stronger emotions than a smile, at the same time it is kind of more diverse. Like, to be able to smile convincingly, I need to feel at least neutral moodwise, meanwhile I don’t need to feel neutral or above to be able to laugh genuinely, or even just convincingly, because for me laughter is not only about feeling happy. I can feel amused by something without needing to feel happy or even close to happy. It’s just not about happiness. I can have a super shitty day but still find something worth laughing at, even if just sarcastically. But a smile has to be happy. A sarcastic smile just doesn’t do, right? πŸ˜€ A sad smile makes you feel more miserable, well it does make me feel miserable and I guess look miserable too, so I don’t bother with smiling when I’m sad unless I think someone is really going to think I am rude because I didn’t smile at them. Also laughter is a coping skill for me some of the time, plus it’s the Bibiel part of me who just is this way that she always sees the funny or absurd side of a lot of situations. Considering that, regarding the latter, Sofi is exactly the same, well maybe not exactly but her way of seeing things is very similar and at the same time we complement each other so that makes that together we can find even more humour of different kinds in things, we have a lot of laughs together. And so, I think the last time I laughed must have been some time last night, as I was spending time withh Sofi, and yeah, we usually laugh together at this thing or another, at least a little bit. And yesterday we both were in a bit of a crazy mood so we were laughing a lot and with Misha too.

You? Also, just out of curiosity (well, this whole series is just out of curiosity but anyway) what do you find easier, smiling or laughing, especially if you have any kind of a mood disorder? 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.

Should governments make laws to protect people from hurting themselves?

My answer:

I don’t think it should be a matter of “should” and of protecting people from themselves, because that actually seems quite patronising or has a potential to be received as such. I think it would be best if such things would always be considered based on a specific case, but since that’s not really possible, I think for people as a whole, such law wouldn’t be a good idea. Adult people are responsible for their own actions. What I think would be wiser would be some discouraging, or providing them a lot of support and practical help if possible, in situations when they are at risk of hurting themselves or when they’re already doing it. It could also be prevented in advance, I mean rather than protecting someone directly from killing themselves by doing everything that will make it more difficult/impossible, we could implement some measures to make it less likely that people will want to try doing it. Either case doesn’t seem to be very realistic though.

What do you think about this? πŸ™‚

How I’ve been feeling lately.

Today, I’d like to write some a bit longer post inspired by a journaling prompt again, as I haven’t done that in a while. It probably won’t be too long or indepth, but I think it’ll be nice to do and also fill y’all in a bit on what’s going on for me. The prompt I chose to inspire myself with is from Listify by Marina Greenway and goes like this:

Β Β  Lately, I’ve been feeling… Your state of mind changes over time and through the seasons. Record how you are feeling right now. What is going through your mind? Are you responding emotionally to something that has happened earlier in the week? Are you anticipating your day in a positive or negative way? What does your general state of being feel like? Do this every so often to chronicle your journey.

I typically write in my journal and/or on here about how I’m feeling in a more prosaic form, and I don’t think doing a list will become my typical way of doing it, but I think it could be fun once in a while. So here is my list.

  • Β Β  Super anxious. I started feeling a bit anxious last Saturday (in this particular case when I say anxious I mean the sensory anxiety thing, but also generally I was super jumpy and hyper alert) and all that for no clear reason. I have some ideas now as for what could cause it, but given the intensity of the anxiety it seems very inadequate and this sensory anxiety episode has been one of the worst I’ve had in the last couple years. Last weekend and the beginning of the week was particularly awful, now I’m slowly recovering and it’s much better but still far from my baseline.
  • Β Β  Excited about MIMRAs (My Inner Mishmash Readership Award) and relieved that I’ve finally sent them out. This is a really happy and exciting process for me and I love the idea so much and that I came up with this, though all the preparations can get a bit exhausting. I am also hopeful that the winners will enjoy their MIMRAs as that’s the whole point of it. I am also happy that Sofi likes her new iPhone which she got from me earlier this week. It was meant to be a Christmas present, but since she chose the colour of it and the accessories anyway I figured I could just as well give it to her right away. Her old iPhone was in an awful state (our parents bought her a used one and it was in a pitiful condition already when she got it, but they refused to get her a new one even though the old one is now barely usable, because Mum says she doesn’t deserve it and needs to have higher grades. I don’t see it as a prize for anything, I think she should have a functioning phone to be able to do her schoolwork from home and not be lagging too far behind her peers with her knowledge and abilities regarding technology. Plus now that she has a functioning, brand new phone which will be supported for a few more years to come, unlike the old one, it should definitely serve her well at least until she’s 18, and then she can buy a new phone for herself, so no one of us will need to bother with buying her another phone any time soon. If she breaks it earlier, I emphasised it to her that it’s entirely her problem, although she does have coverage). She is really enjoying having a functional phone, and Mum now says that it was a good idea.
  • Β Β  A bit frustrated and tired. Frustrated with the fact that I’ve really been having a lot of migraines lately. Like, the last few months or so. It was the same last year about this time, autumn-winter, and then it got better, so I’m wondering if it’s some sort of a seasonal thing and if so why that is. It’s really getting in the way of things. The migraines themselves aren’t even all that painful, I’ve had worse and I know people have worse, but they’re really energy draining and make me feel kind of generally sick, so I’m effectively unable to do much of anything while having a migraine, especially that it often gets worse when I try to force myself to do something more ambitious that requires getting out of bed, and they’re more difficult to get rid of than they used to be. The combination of migraine medication and good sleep, or sometimes even just a usual NSAID if I’d take it early enough, used to be enough to get rid of the problem in one day, occasionally it would linger for some longer time but that was rare, while now the meds help rather rarely and it’s a bit like a lottery, at least I haven’t found any connections as to when and why they work or don’t work, and I need much more rest and sleep to make myself feel any better, I also don’t want to take the meds too often. I know it’s like this or even worse for many people who have migraines, but mine were generally easier to handle before so the situation is new to me and I’m feeling a bit clueless, and like I said frustrated because they often get in the way just when I want to do something productive. And as for the tired part, well I had a migraine yesterday until about noon today, and I’m still feeling a bit tired and sluggish afterwards.
  • A little stressed/worried, and a little looking forward to Christmas. Christmas is typically a stressful period for me, as it is for many of us. I don’t really know yet what it will be like for us this year, as we don’t have any specific plans, so typically I’m feeling rather apprehensive. But it’s also generally a nice occasion and I hope it’ll be at least a bit fun and not just stressful like it was last year.
  • Β Β  Desperate for a new faza. But that’s been the case for quite some time now and you probably all know about it, I don’t have anything to add to this really.

And I think that’s it. My day, apart from the migraine earlier, has been okayish, and it’s now coming to an end, so I’m not really anticipating anything today except for hoping for a decent night’s sleep. And my state of being feels a bit sluggish, a bit jumpy, but overall rather neutral at the moment.

How are you feeling? Do let me know. 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™‚

Song of the day (12th November) – Cornelis Vreeswijk ft. Made In Sweden – “Ett Gammalt Bergtroll” (An Old Mountain Troll) & Sofia Karlsson – “Ett Gammalt Bergtroll”.

Hi people! πŸ™‚

So I’m quite behind with this series, which is quite a pity, because on 12 November was one of my main fazas – Cornelis Vreeswijk’s – death anniversary. It’s been 37 years since he passed away!… As I always say, way too many! And I originally wanted to commemorate him exactly on that day but oh well… at least I can do it now.

I’ve been feeling kinda crappy lately so I chose a poem which, deep down, between the lines – but it’s quite easily readable – is also about feeling shitty with and about yourself, which generally is very different from how I am experiencing it yet at the same time very similar because essentially it’s all about having an overactive and spiteful self-critic and hating yourself as a result, just the ways this hatred manifests are different between different people I think.

The author of the poem, however, is not Cornelis, although as you may remember from my blog he himself was also a poet in addition to being a singer. This poem was written by an early 20th century Swedish poet Gustav FrΓΆding, who is really loved in Sweden, although, just like Vreeswijk he was also quite controversial in his time and if I remember correctly even had an episode where he faced a trial for obscenity because of one poem he wrote. Also, again just like Vreeswijk, he had a life-long problem with alcohol as well as intimate relationships with women. Interestingly, in my Dad’s dictionary, a troll means someone who drinks heavily and chronically. FrΓΆding spent a large part of his life in all sorts of mental health institutions though it’s not clear what diagnosis he had exactly, it sounds like some sort of psychotic disorder and depression, the latter ran in his family. More exactly it was his mother who suffered from it when he was a child, and as a result wasn’t able to parent him properly and so he had a rather difficult childhood. Years ago when I was learning a lot about FrΓΆding and reading his poems simply because I knew Vreeswijk appreciated him and they appeared to have so freaking much in common (and if you’ve got any idea about fazas you know that for someone who has a faza anything even remotely related to their faza object is interesting and worth digging into), I’ve come across an opinion that this early separation from his mother was the main factor contributing to his later problems with relationships and pretty much all the other emotional and mental health related difficulties that he was experiencing, including the self-hatred thing that we’re focusing on since that’s what the poem focuses on.

Cornelis Vreeswijk, as you may know since I’ve written about that a few times earlier when writing about him in more detail, also struggled with similar emotional issues (though he did not have any official mental health diagnosis as far as I am aware, though he did suffer from extreme paranoia and stuff). He had terrible problems with intimacy and closeness and often wrote about craving it, and had relationships with many women in his life, but when things started to get more deep, it scared him, or something else made the relationship impossible to be stable for longer and things were constantly stormy and messy from what you can observe when having a closer look at his life. He was always very shy though it may be hard to believe just when hearing him live a few times, I had a problem with that anyway because he is so eloquent and has a sort of jovial, kinda boisterous air about him. But when you observe things for longer, listen to many more live recordings, read some more and listen to some interviews like I did, it does show a lot, plus obviously it is there in his poems and lyrics. It often amazes me how he could mask it so well but from what I understand he saw his outside personality as some sort of a role he was supposed to play in life, or something. Must have been so freakishly exhausting, would surely be for me anyway haha. And of course there’s that whole self-loathing and self-destruction thing which is just so sad. I remember when watching the 2010 Amir Hamdin’s film “Cornelis” (which was a real struggle since I didn’t really have any audiodescription or anything and with my less than perfect Swedish skills didn’t always understand everything fully but still I think I understood a lot on that first watching, I did have English subtitles to help myself with though when need be but back then my Swedish was actually better than my English) that was what affected me the most when I saw the level of his self-destructivity, perhaps because, while I am not an addict in the classical understanding of this word, I struggle with other self-destructive behaviours like self-harm and can deeply relate to what it’s like feeling awful about yourself, so I guess it must have struck a chord or something.Β  Β  So it seems quite natural that Cornelis would feel some affinity with FrΓΆding as they shared so much, and I am actually a bit surprised that he didn’t interpret more of his poems because apparently a lot of Swedish singers did that.

He released his interpretation of it, with a very jazzy/bluesy feel on his 1970 album “Poem, Ballader Och Lite Blues” (Poems, Ballads And A Bit Of Blues). It’s not as very prone to setting to music as many other FrΓΆdings poems are, so probably for that reason, rather than an actual song, it’s more like sing-speak, which is something Vreeswijk used a lot in his music and I think it often makes it more expressive than just singing and is very characteristic of his style.

But a couple years ago, quite some time later after I acquainted myself with Cornelis’ discography, I came across his live performance of this song on YouTube, in collaboration with a 70’s jazzrock band Made In Sweden. I like the album version a lot and it’s not much different at all, despite the instrumentalists are different, but I slightly prefer the rocky live version rather than the jazzy album version as it just speaks to me more, so that is why I chose to share the live one with you.

For contrast, there is another artist from Sweden called Sofia Karlsson whom I absolutely love (I shared her cover of Vreeswijk’s Grimasch Om Morgonen in the very beginnings of this blog), who also interpreted this poem in 2009, but in such a starkly different way! While Cornelis’ version is so raw and jaggy, intense and frenzied, raving and just so very directly conveying the feeling of this poem, Sofia’s version, while no less expressive, is so much subtler, sophisticated and I’d say more from an observer’s point of view, if you get what I mean. For some people it might make it more bearable. πŸ˜€ I love both!

In Cornelis’ live version, he makes a brief introduction just like on the album and says that: “Gustav FrΓΆding was a hip poet. He tried to drown his sorrows. But they could swim”. I think it’s such an interesting and Vreeswijkish way to put it lol. Below is a (free, not literal) translation of this poem, so that you know what it’s all about. I took it from

here.

It’s a pity though that most of you probably can’t understand the Swedish version and there are so many cool words that I’ve never heard anywhere else, my favourite is klumpkloss, which in the translation below is interpreted as “object of fright”, I’m not exactly sure how to translate it to English but I suppose it would be something like a lump. I find this word really funny but sadly never had an occasion to use it in a real conversation, I don’t even know if people actually use it. πŸ˜€

 

The evening draws on apace now

The night will be dark and drear;

I ought to go up to my place now,

But ’tis pleasanter far down here.

Mid the peaks where the storm is yelling

‘Tis lonely and empty and cold;

But ’tis merry where people are dwelling,

In the beautiful dale’s green fold.

And I think that when I was last here

A princess wondrously fair,

Soft gold on her head, went past here;

She’d make a sweet morsel, I swear!

The rest fled, for none dared linger,

But they turned when far off to cry,

While each of them pointed a finger:

“What a great, nasty troll! oh, fie!”

But the princess, friendly and mild-eyed,

Gazed up at me, object of fright,

Though I must have looked evil and wild-eyed,

And all fair things from us take flight.

Next time I will kiss her and hold her,

Though ugly of mouth am I,

And cradle and lull on my shoulder,

Saying: “Bye, little sweet-snout, bye!”

And into a sack I’ll get her,

And take her home with me straight,

And then at Yule I will eat her

Served up on a fine gold plate.

But hum, a-hum! I am mighty dumb,–

Who’d look at me then so kindly?

I’m a silly dullard–a-hum, a-hum!

To think the thing out so blindly.

Let the Christian child go in peace, then;

As for us, we’re but trolls, are we.

She’d make such a savory mess, then,

It is hard to let her be.

But such things too easily move us,

When we’re lonely and wicked and dumb,

Some teaching would surely improve us.

Well, I’ll go home to sleep-a-hum!!

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™‚

Ways of showing gratitude to others. And how about yourself? List of the former, and my (probably biased) musings about the latter.

Gosh, what a wordy and clumsy title! But I didn’t have any more graceful-sounding ideas and didn’t want it to be too bland either.

A while back, I bought myself another book to work with for my journal, and also for blog post inspirations, about the existence of which, again, I learned from Astrid at

A Multitude of Musings.

It’s Listify, written by Marina Greenway, and as you can guess from the title, it focuses mostly on lists. The first part of this book is all about gratitude, and the first list idea is the following:

Β Β  Ways I can show gratitude to myself and others

It’s important to show others we appreciate and care about them, but it’s equally important to acknowledge ourselves and all we do. List the ways you can do so, and challenge yourself to do one from each list everyday.

As for the challenging myself part, I wrote the original list in my journal a few days ago and decided to indeed do these things to show my gratitude to people. So far I don’t find it particularly difficult as it’s mostly my close family, and of course I’m doing the MIMRA which is also one huge act of gratitude but also a whole lot of fun for me. I suppose though with people I’d feel less comfortable around I’d have more problems with some of these points, but I’ll try anyway when there will be an opportunity, as gratitude is a good thing, obviously.

Below is the list of ways of showing gratitude to others that I’ve come up with so far.

Β Β  Gratitude to others

  • Β Β  Simply say “thank you” or acknowledge in any other verbal way that I appreciate what they did.
  • Give them an appreciative hug or show them affection in some other way.
  • Compliment or praise them, or say anything nice that could boost their mood or confidence.
  • Help in any way I can.
  • Be attentive to their needs and show them my interest in them and that I care about them.
  • Listen carefully and actively.
  • Do something that may make them happier or even just make them laugh or smile.
  • smile to them.
  • spend time with them.
  • Do random acts of kindness for them.
  • Be there for them when they need it.
  • Do the same thing for them that they did to me, if applicable.
  • Give them something nice that they will enjoy, like a care package.
  • Give some of my free time and energy to them, even when I could use it to do something else that I may like more.
  • Be patient with them.
  • Offer advice if wanted.
  • Remember about them – for example, when doing shopping for myself I may do it for them as well if they need it, or if I see something that I know they like I can get it for them, or at least tell them that I saw it and where so that they know I often think about them and know what they like. –
  • Write something nice about them, or for them, as writing often feels easier than talking to me.
  • Give them their favourite meal or treat.
  • Find a book or music they could like, again, to show them that I care and know something about them.

Can you come up with anything more? Please do share in the comments, unless you prefer to write a separate post and pingback, whatever feels better. πŸ™‚

Β Β  Self-gratitude

Now that was (and is) a tricky thing to me. Not just implementing it, but generally the concept. I don’t know, perhaps I’m seeing it in a very inflexible way, and most likely, just like I wrote in the title, my view of this is very biased, but I can’t really see much sense in self-gratitude. Maybe I just don’t understand it well. As I was preparing to write this post, after I read some things online about it, thinking that perhaps they will enlighten me (which they didn’t) I asked my Mum what she thinks about it, whether she has ever felt it, and if she has any ideas about how one could express it, and also how it’s different from self-care or taking pride in your accomplishments. My Mum had a similar view on this and actually started laughing and said that to her it also doesn’t make much sense, because according to her in a way it implies that there would be another self inside of you to whom you could be grateful for example for doing something you yourself wouldn’t think about doing, or wouldn’t be able. Like: “Oh, thanks, self, for reminding me that I should set my alarm at 6 AM, I don’t want to sleep in”. πŸ˜€ I mean, do any of you really think like this – say you’re driving somewhere, and instead of taking your usual route you have a gut feeling to take a roundabout one, and later you learn that on your usual route there was a huge traffic jam because there was an accident earlier – would you think: “Oh yay, thank me!”? If you would, it’s not at all that I think it’s wrong for anyone to do this and I think you shouldn’t, I’m just curious and would like to know because it’s certainly not my default reaction and I would probably burst out with laughter if I tried to force myself to it.

What I assume people understand as self-gratitude, is for example when you had an exam and passed it very well, you learned for ages until your brain got so swollen it nearly burst out of your skull and you mainly focused on this goal of passing this particular exam because it’s important for you, so perhaps you often refused yourself many things you liked and spent most of your time with your nose in the books despite you didn’t particularly enjoy it. But you did pass the exam and you’re euphoric, so now you can go for a huge dinner plus some very fancy coffee and an ice-cream dessert, then go to the spa and have a massage and then go shopping for things you really enjoy shopping for, because this is your way of thanking yourself for your perseverance, determination and for achieving your goal.

And that’s all good. But, just like I said earlier when asking my Mum, how’s that different from just regular self-care or celebrating your accomplishments? It seems like it should if it has a different name, and when I was thinking about a potential list of ways to show myself gratitude, I thought it was just a list of self-care activities.

Perhaps I don’t think in such a “Thank me” way, because I am a Christian, and rather than thank myself, a much more natural thing for me is to thank God. Like, when it’s a nice day and the weather is lovely and there’s a lot of crunchy, fallen leaves for Misha outside, I’d rather say “Thank you, God, for giving me the idea to go out and refresh my brain, and thank you for the lovely weather and that there are so many beautiful leaves for Misha here” than something like “Thank me for going out”. It just feels totally unnatural to me, and I’m not just talking about the “thank me” form which I’m mostly using in a humourous way to emphasise just how unnatural and awkward the whole thing seems to me. I may rather say: “Oh, I’m so glad I went out” or: “What a great idea I had that I got some leaves for Misha” (that’s still not my typical inner dialogue as I’m normally way more self-critical and sarcastic with myself but at least something I’m trying to aim for).

When thinking about any accomplishments, I don’t really think of them in a way that I’m grateful to myself for them. For example, I am quite proud of my language learning accomplishments but am not grateful to myself for them. It’s not my merit that I have good linguistic skills, I didn’t get to choose them at birth or program my brain to pick up languages easily. Neither is it really my merit that I’m learning Welsh now, because I wouldn’t be able to do it if the people who did the course wouldn’t create it, if my Swedish teacher didn’t show me how to learn a language on my own and didn’t always believe in me and that I can do it, if I wasn’t taught how to use technology and if my Dad wouldn’t be employing me so I could actually allow myself for paying for the courses, buying Welsh speech synths, Welsh books and what not without stressing myself about it. Thinking according to Christian faith, I wouldn’t even be able to take any action having all these things if I wouldn’t get the idea from Holy Spirit. Okay, I guess I could be grateful to myself for acting upon that idea and not wasting the skills I have, but in what special way should I show this gratitude to myself? Sometimes I also have a sort of self-gratitude feeling when I feel really euphoric about something so my self-esteem also goes up but that’s very much fleeting and not a mature, serious kind of feeling so the more I don’t know in what way I could act on it.

Going my Mum’s trail of thought, that it sounds like we should be grateful to some other self, well, perhaps that makes some sense when we think that our personalities are made up of different parts. There may be, speaking in a very basic way, a part of us that is more prone to do good things, and another one that makes us do things that we regret later. So we may be grateful to that “good” part. Perhaps that’s what it’s all about. Or I’ve mentioned on this blog sometimes how I have this part of myself that I call Bibiel, who is very childlike and humourous and eccentric and always talks about Bibiel-self in first person and who is like a mentally healthier sort of, less inhibited version of me whom I actually genuinely like. So maybe the clue is that I should feel grateful to Bibiel? Actually I sort of am, because without Bibiel I’m not sure where I’d be now, and Bibiel helps me with a lot of things. Perhaps I should be more grateful to my inner self-critic Maggie when she’s not as critical of me as she is usually, and maybe that will make her feel better?

My Mum goes as far as to say that all these self- things only make people more conceited. I think that’s a rather huge overstatement because it’s definitely important to be kind to yourself and love yourself, as much for your mental, physical and emotional, as spiritual wellbeing and even the wellbeing of others, though there is certainly a risk of this as these days we hear about alll things self- all the time and it’s easy to lose balance between what’s still self-love and what’s already conceit, in my opinion.

So my view of this is definitely strongly influenced by the fact that I’m a practicing Christian, someone who is not might think differently, as well as the fact that I have avoidant personality disorder, which has quite a strong influence on how I feel about myself. And it’s because of AVPD that I think I may be biased here.

So I’d like to hear your thoughts about this. Do you practice self-gratitude? If so, in what ways and how would you define it? In what ways would you say is it different from self-care and celebrating your accomplishments? Am I missing out on something huge here? Let me know. I may not be able to share your opinion, but that doesn’t matter as far as I’m concerned, and who knows, you may even convince me. πŸ™‚ Oh yeah, and let me know if you can think of some other ways to show gratitude to other people perhaps ones that you use yourself that I didn’t list.

 

I can deal with it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Question of the day.

What is your favourite type of sweet drink?

My answer:

For a long time I’d say something like either Pepsi or Cola, but I think lately it’s been orange juice. I’ve always loved orange juice –
though I’ve had quite a long time where it was a no-no because of my emetophobia as I once felt very awful and threw up after it and no matter how much I liked it, I would not have it, but over time my emetophobia has lessened enough that I can drink it with little to no emotional problem and I’ve figured it couldn’t be the orange juice that had caused it because there were many more factors involved – but recently I’ve been drinking a lot of it and I really love it. Another sweet drink I love but had a similar emetophobia-related association with is cocoa, and since I started drinking it again, I love it even more. So actually I don’t know which one I like more, cocoa or orange juice, but I have orange juice much more often. And when I drink cocoa it has to be strong so it isn’t all that very sweet.

You? πŸ™‚

Question of the day.

What are you thinking about?

My answer:

That after writing this post, I’m gonna go sleepy sleep. I’ve been feeling quite dreadful today because finally, after like half a year, Jack the Ripper, aka Jack the Butcher has come to visit me yesterday, and he’s been catching up on all the lost time. Although from what my gynaecologist has told me in the past it’s not overly concerning yet, especially if you have some hormonal problems to begin with like I do with pituitary not to have your period for about half a year, I was beginning to get a bit concerned very recently and Jack must have read my thoughts and came yesterday showing his full potential. I’ve had a terrible headache all night and most of the day today and am feeling achy and lousy overall, and I’ve actually slept already today, which is not like me because I normally don’t nap during the day and avoid it for all costs, but I still feel like bed is the best place to be in right now. But hey, at least I didn’t seem to get any bad PMS symptoms, and am feeling okay emotionally and mentally today, that’s a big plus! Perhaps tomorrow will be the other way around. But I better not say it if Jack can seriously read my thoughts. Well I was a bit mood-swingy lately but not so that it would be a problem or that I’d even noticed it could be PMS. So yeah… 😴

Oh but speaking about all things hormones, have I told you guys about my thyroid ultrasound? I mean the results? Well I don’t remember now so if I did, I’ll just tell you again. As I wrote before it I was a little worried that something may be wrong, but the ultrasound doctor said it was totally normal, so I’m happy. Even the socialising wasn’t too bad, somehow I managed to get along with him without much difficulty, perhaps because his daughter apparently is also called Emilia, lol, and it went more smoothly than it always did in the past back when I was going to Medical Academy for all sorts of pituitary and thyroid testing when I was a minor, the ultrasound there always took ages and something about it was super stressful so I was very surprised. As always, defensive pessimism paid off.

Okay, your turn now, my thinking brain is shutting down so I have nothing more to say on the topic. πŸ˜€