Question of the day.

What is one old piece of technology you can’t bring yourself to part with?

My answer:

For starters, it was less than a year ago when I finally decided to take the risk and part with my good ol’ Nokia E66 with Symbian. For most people, that’s really strange. Even many blind people don’t understand things like that because, yes, smartphones can be a very helpful assistive technology, and many think that the only explanation for when you cling on to your old phone must be that you’re afraid of new things. Which, admittedly, was partly true in my case, as I typically dread change, but that’s only part of it. I would often tell people, and also here on my blog, that the reason I was still clinging to it was my loyalty to Finland (Nokia is Finnish, in case you don’t know). And, honestly, we’ve been through so much together during those ten years. And she was working perfectly fine, so why fix what ain’t broke. Although in those last few years I didn’t use this phone very extensively as I hardly ever talk to stranger people on the phone and don’t feel the need to talk on the phone to people I know ’cause we either see each other IRL or can email, and emails are also way better and more interesting than texting. But mostly, what held me back was that I didn’t think I could deal with a touch screen, and that’s not because of my lack of sight, but more the associated stuff. As you likely already know, I also struggle with coordination and dexterity, and have a hard time with spatial orientation be it on a big or small space. My previous experiences with other people’s smartphones (usually with Android, which is a bit less accessible, and its free TalkBack screen reader) weren’t particularly encouraging either. I did know that you can use a Bluetooth keyboard with iOS and there are various accessibility features that can make it easier but didn’t think that would be enough for me as you can’t do every single thing on iOS via the keyboard because it’s just not made this way really. But then as I’ve already written on here, Sofi got her first iPhone and let me use it, and while I still wasn’t convinced that I could find my way in the world of touch screens, I felt like perhaps it would be interesting to just try. I could buy myself an iPhone and if it won’t work out, I can simply sell it and come back to my old Nokia. Also I would need to find myself some other phone sooner or later, as even if my Nokia will keep going for the next 50 years, it soon won’t be supported and won’t have service, so it would feel safer to experiment now than last minute. Now that Sofi has an iPhone she could help me figure it out and maybe it’ll even work somehow. Then I came across a review of iPhone SE 2nd generation by some blind guy who also has dyspraxia, where he also mentioned that he uses a keyboard and, while in his situation it’s not ideal either, it works way better than the screen. Based on the review, he was a rather advanced user, so that really made me think. I do not have dyspraxia, my difficulties aren’t as severe as that, so if a dyspraxic person can manage an iPhone with a keyboard and use it efficiently, perhaps I could too. I definitely should try, that’s for sure.

And I did, and, as you know, I didn’t sell my iPhone. In the end I decided to use it in combination with my Braille-Sense which is a Braille notetaker which can work as a Braille display plus keyboard with the iPhone, although I do have a little keyboard as well which can be useful as it’s more portable and less clunky, and I can do most things this way. I do find it quite laborious to use the screen itself, but can do it if I have to and have gotten used to the laboriousness. I’m not the speediest iPhone user for sure when I have to do things from the screen, and I have to take my time to do some things, but because I theoretically know how to do most things on the iPhone, I can practically do pretty much everything I want to do, as long as it’s doable with the screen reader and as long as I have the time and patience, which I typically do. Well okay, my pics are still quite bad and I know some blind people do better, but that’s a bit of a different kettle of fish, and sometimes I also manage to take a decent one without any assistance. I still have the Nokia though. Just so it can work as an exhibit for future generations. 😀

But there’s still one old piece of technology I’m holding on to, despite I theoretically don’t have to now that I have the iPhone because the iPhone could do that job. It’s not quite as ancient, actually the current one I have is only over a year old, but generally the technology in it isn’t particularly cutting-edge for our current standards, so much so that many features it has that rely on external services are no longer supported because its firmware is a bit outdated and I guess no longer developed even though the device is still sold. It’s basically a specialised device (with a very specialised price, as with most of them) for reading books and playing multimedia. You can read ebooks on it with a speech synth or audiobooks, listen to music, podcasts, radio, record audio, it also has a calendar, alarm and other such little gimmicks which you wouldn’t normally expect from a multimedia player. Now that smartphones are being very widely used as assistive technology and many expensive, special assistive devices with limited capabilities have a hard time competing and don’t even try, book players like that are seen more and more as something for elderly blind people, say, such who have lost their sight late in life and don’t necessarily feel like dealing with an iPhone, especially if they wouldn’t even feel like having a smartphone if their sight was good, and currently sold “dumb” phones don’t do screen readers.

Why would I use an outdated and pricey thingamajig about which even its own producers forgot when I have an iPhone which can do its job just as well? Well, comfort is key when reading books. PlexTalk is smaller than my iPhone and easier when you want to read for example while commuting. It doesn’t have a touch screen, which could be accidentally activated while you go about your business with it in your pocket or bag. It’s faster to use for me personally. And, what Bibiels like best is reading in bed for a while before sleep or after waking up when I have the time. At the same time, Bibiels don’t do silence at night, so there has to be some music quietly in the background, or a radio station where they talk some fabulous language, it’s good to have a soundtrack to your dreams as long as it’s not too loud or intrusive. The music for a long time used to go from my computer, but my current computer is super noisy and that’s very uncomfortable for sleep, makes me feel like I’m having a sleep study in a lab rather than sleeping in my own room, and my speakers are also weirdly noisy in themselves, making the weirdest sounds, and I can’t seem to be able to fix that in any way, I guess it’s something electrical, which is okay during the day but not at night. So now the way it works is I have my lovely little B&O speaker which I connect to the phone, and it plays. iPhone, as you may or may not know, only supports one audio source at once, so I can’t possibly both listen to music and a book at the same time from it, and then maybe even set a sleep timer for the book, but not for the music. Not doable. Even if I could have two audio sources play at the same time, I think it could get quite overloading if they were both playing from the same device unless you could manage the volume of both separately.

So yeah, there’s an amazing app for reading ebooks, or texts in general, called Voice Dream Reader, which has speech synthesis for many more languages than the PlexTalk which only has, in my case, Polish and English, there’s even the Jacek voice on Voice Dream Reader, the one that I really like but have lost and which is no longer produced in the form in which I had it, so you’d think I’d be super happy to use Voice Dream Reader and have Jacek at least in there. But no, reading on the phone totally doesn’t go along with my habits.

One of the secondary reasons which finally led to me getting an iPhone was that the support of Audible audiobooks had ended for PlexTalk last year. That was super dramatic, as I had only started using that feature extensively and the only reason for why I decided to buy PlexTalk again after my first one broke, instead of another, fair bit cheaper, device of the same kind was the Audible support. I wrote to the Audible peeps describing my situation and asking them if they could have some mercy on people with assistive devices so that their users can somehow still use their audiobooks despite the old format being ditched. They wrote me very diplomatically that they don’t really care, and I guess they couldn’t even do much about it if they did. I wrote to Shinano Kenshi (PlexTalk) peeps, asking them very diplomatically if they could finally update their flippin’ dinosaur firmware so that it could perhaps support the newer Audible format, which, in fact, sounds way better in terms of quality and has been around for a long time before so it’s not like it’s super new. They didn’t even get back to me, which wasn’t a surprise, as I had a feeling they have limited their activity around PlexTalk devices to only what’s absolutely necessary. Then, months later, when I almost forgot about that email, I got a response from them, diplomatically saying that, um, yeeeeah, maybe it is possible, but it really doesn’t pay off, too much bother.

Now, I have Audible on my phone, but I hardly ever use it, for the reason I wrote about above. The good thing is I now have pretty good access to English ebooks instead that, with a little playing around, I can easily read on PlexTalk, so it doesn’t feel that bad not to have Audible on it.

Do you have such an old device? Why is it so difficult to part with? 🙂

Question of the day (16th December).

What is a miracle that happens every day?

My answer:

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

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

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! 😀 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 😛 ).

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). 😀 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? 🙂

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

Hi people! 🙂

What was the last thing you got excited about?

My answer:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How about you? 🙂

Question of the day.

Hi people! 🙂

What was the last thing you purchased?

My answer:

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

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

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

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

How about you? 🙂

Question of the day.

What was the last thing you texted?

My answer:

I was texting with Zofijka a while ago. Since her and me are the only people in our family who have iPhones, and Sofi can spend ages on the phone when not controlled, I’ve set up a family cloud for us a while ago and I control her screen time so that Mum is happy. It’s a compromise because otherwise my Mum freaks out so much that Sofi isn’t allowed Internet access on her phone, and this way it’s quite pointless that she has an iPhone at all. This is quite overwhelming for me though I’m happy to help Mum, I just don’t like the part of being the bad guy too much, and it’s quite a responsibility even if I’m mostly asking Mum what Sofi should be allowed or not allowed as Sofi is not my child so I can’t and don’t want to make decisions about her, at least not when Mum is around. And today Mum told me that I should increase Sofi’s downtime, quite drastically, and basically now she can use her phone only three hours a day. Some half an hour later she sent me an angry text (she is allowed to text during downtime) asking if I’ve limited her WhatsApp use as well, I said no, we haven’t talked about that with Mum, but actually I should probably ask her, because it’s not a good idea for her to have limitless access to WhatsApp now during school year. Sofi bombarded me then with frantic and aggressive texts about how much she needs WhatsApp and how key it is for her daily functioning, well she didn’t phrase it this way but it sounded as if her life depended on 24/7 access to WhatsApp. I mentioned that even if her WhatsApp will be limited, she’ll still have access to normal messages, so I don’t see the problem, to which Sofi responded that WhatsApp is almost the same as messages so it shouldn’t be limited. Well, if WhatsApp is the same as messages, what’s the point in using both of them and why does it matter for her so much which one does she use? I was feeling compelled to limit her WhatsApp just for her awful behaviour, but first I called Mum and told her about the situation and asked what she wants to do. And Mum wanted Sofi to have her standard app limit – that is an hour and 50 minutes as for most of her apps – for WhatsApp, so I cut it down and texted Sofi about it. So that was my last text.

Oh, and if WhatsApp counts as texting too, just while writing this post I got a message on there from Dad, who sent me some YouTube video, and I replied to him gently encouraging him to think independently because his source is quite biased and spreads a lot of bullshit, which I’m sure he’d notice if he’d thought of it before sharing with everyone. Uh, the way I put it on here sounds kinda jerky I guess, but my message really did not, I’m just a bad translator, even of my own writing, lol.

You? 🙂

Testing, testing!…

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