The Future Is Not Clear #SoCS

SoCS Badge 2019-2020

Exactly a month ago, I made the decision to start the process of looking for another care facility to live in long-term. I felt, at the time, that it’d take at least two years before I would’ve found a place and I was fine with that. Now, though I am still fine with the fact that it might take years before I’ve found the near-perfect place, my forever home as it were (oh boy, that sounds like the afterlife to me, haha), the path inbetween not being clear, doesn’t sit right with me.

I like to have control. I don’t like to have made my wishes clear and then not hear from the care consultant for months until he’s heard from an agency or something and they want to meet me. I don’t like the fact that a lot might’ve been discussed by those agencies with my behavior specialist or the care consultant or whatever without me knowing anything about it. That feels too vague. Besides, it feels as though I have no influence over it. Which may or may not be true.

In this sense, the fact that I’m intelligent, works both for and against me. My fellow residents, who have severe to profound intellectual disability, don’t even know anything about such big decisions. Yesterday, the least intellectually disabled of them moved rooms and he seemed to have had little say in the matter. That sounds very scary to me. I want to have a say. Yet if I can’t, and things are made clear at my level of understanding, as they were with him, then maybe it’d be easier.

Now, I do intellectually understand a concept like two years or more, but emotionally, it’s very hard to grasp. I wish the future were more tangible in this sense.


This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “clear”.

Unconsciously Incompetent #SoCS

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Allowed to Rest #SoCS

SoCS Badge 2019-2020

Like I’ve said multiple times over the past week, I’m self-isolating with COVID right now. Today is day four of my five-day mandatory quarantine. I have taken each day as an opportunity to stay in pajamas, because I didn’t feel like getting dressed now that I wasn’t allowed to leave my room anyway. That being said, taking my much-needed rest, has been more of a struggle.

Both on Wednesday and this morning, I was up in the middle of the night really, or early morning, depending on your perspective. On Wednesday, I was up by 3AM and couldn’t sleep. Today, I could stay in bed till 4AM. The other nights, I managed to sleep for at least ten hours, sometimes twelve.

It isn’t that I’m not tired, really. Or maybe I’m not, but it does feel kind of like I am. However, my brain won’t shut off. It’s like my body is exhausted and in need of rest, but my mind continues to tell it to carry on. It isn’t even my brain. Well, you know, my mind is in my brain too, but I mean, it isn’t that I’m not cognitively tired too. But I keep beating myself up over it.

Then again, if I can allow myself not to get dressed, why can’t I allow myself to lie in bed and sleep this whole thing off? I can’t force myself to sleep, of course, but I can try to get some rest. Instead, I’m writing this mindless blog post. Thanks for reading! I’m allowed to rest now. Or read what the rest of you have to say.

This post was written for Stream of Consciousness Saturday, For which the prompt today is “Rest”. I just realized that, in my second-last sentence, “you” is a better fit than “I”, but editing is against the rules. Oh well.

My Hands #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “body parts”. I could of course write about how I’m scared for my abdominal X-ray this coming Tuesday and share all the details about my tummy ailments, but I’m not going to. After all, Lindda has asked us to warn our fellow SoCS participants if a post is NSFW and I generally don’t write that type of posts on my blog anyway. So, I’m going with another body part: my hands.

After all, what’s been worrying me most is that my abdominal complaints will be something serious, like cancer or the like. And if they’re cancer, that I’ll die. Or need to go on chemo. And if I’d need to go on chemo, I’d lose my nails. Not that I mind my nails that much in the sense that I like to polish them or whatever. I bite them like crazy, in fact. But I’d like to keep the function of my fingers please. So, with those scary thoughts out of the way (I hope writing them down doesn’t make them come true), I’m going to write about why I appreciate my hands.

Some staff say I have piano fingers. I can’t play the piano to save my life, but what they mean is that my fingers are relatively long and thin. I like that. They allow me to type on my laptop keyboard with relative ease. I used to make a lot of typeos. Not anymore. I don’t know why.

My fingers also allow me to read Braille. I don’t read traditional Braille books or paper anymore, but I do read a lot on my Braille display. If I lost my nails, I’m pretty sure I’d no longer be able to read braille, because, well, even if I could still feel the Braille dots with my fingertips (assuming they wouldn’t need to be covered in band aids or something), I guess my Braille display wouldn’t like all the stuff coming from my exposed nailbeds. Oh, is that NSFW?

Besides my fingers, my hands allow me to touch all kinds of textures. I love my large collection of stuffed animals, all with their different feels to their fur. I also love my two fleece blankets, one I got in my Christmas package from my old day center and one the day activities group with the sensory room bought for me so I had my own blanket to cover myself when going into it.

One exercise I used to do when trying to stay present when I’d often dissociate (not that I don’t dissociate anymore, but I find it harder to do the exercise), is to touch various objects in my surroundings and describe them as objectively as I can. Then, after I’ve named some characteristics of the object, I name the object itself.

My hands allow me to hold onto my white cane and onto someone’s arm when walking. I might find a way to walk sighted guide if I lost my hand function, but I still appreciate my hands for what they do for me now.

What do you like about your hands?

The Puzzle and Its Pieces #SoCS

When I was first diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) in 2010, I was already aware of some of my alters. I at the time explained to my therapist that the body or “Astrid” was the puzzle and the alters were the pieces. In other words, there was no host who “owned” the other alters as such. I felt that we needed to cooperate as one collective, not as one piece.

I was, at the time, unaware of the other significant meaning of the puzzle piece in my mental health experience, that is, its symbolism in autism-related lobbying. I mean, Autism Speaks and other cure-focused organizations employed the puzzle piece as a symbol of something being “broken” or “missing” about us autistics. That’s why autistic activists are so vehemently against it.

I personally till this day don’t mind the puzzle piece as much. I mean, I don’t like it that Autism Speaks uses it, but other than that, I’m not sure what I think of the symbol. I’ve heard the alternative is something like a rainbow-colored infinity symbol or something, which I have absolutely no concept of, never having seen the infinity symbol when I still had enough vision to picture it.

I do think the puzzle is a great symbol for plurality in general and dissociative identity disorder in particular. Another one is the kaleidoscope, but I don’t like that one as it is the name of the Dutch DID charity. That one is very exclusionary and kicked me out on the basis of not having a diagnosis given to me by someone they approved of.

So, the puzzle. The pieces, when cooperating perfectly, make up the proper image of what should be “Astrid”. Then again, that’s an ideal. Hard to achieve. I don’t think we ever will. And that, in my opinion, is okay.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “Puzzle”.

How Far I’ve Come #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday is “Where”. Linda, the host, is probably referring to the 9/11 terrorist attacks and where we all were at the time when she says that she has a feeling the subject of many posts will be the same. I, though, think I already shared where I was during the 9/11 attacks. I was in my room, writing in my diary about being used for a reality TV show. I mean, in the taxi home from school, I was secretly filmed while talking to the taxi driver and then was asked to consent later to it being shown on TV. I obviously refused. I was only fifteen. My mother said they should’ve picked someone at least five years older than me.

I don’t want to revisit that day though. Instead, I want to reflect on where I came from and how far I’ve come in those twenty years since the attacks.

On 9/11, I was in the ninth grade at grammar school or a classics-oriented high level high school in my city. I was being mainstreamed despite being multiply-disabled, because my parents believed I was just blind and oh so intelligent (which they considered a disability too in some ways, but it really isn’t).

Two months after the attacks, on November 2, 2001, I experienced a major mental crisis, which was of course brushed off by my parents. Six years later exactly, I did land in the hospital when experiencing another crisis.

I spent 9 1/2 years in the psychiatric system, 2 1/2 years living with my husband because the psychologist at my last psych unit felt I was misusing care and should be living independently. Then I went into long-term care. It’ll have been two years on the 23rd.

In a sense, I’ve only deteriorated in those twenty years. On 9/11, I proudly told that taxi driver how I was doing being mainstreamed as a blind person in a high level high school. Twenty years on, I live in a facility with people with severe to profound intellectual disabilities. Even then, I’m the one who needs the most care, getting one-on-one most of the time.

In another sense though, I’ve come a long way. I’ve definitely become more like me, the real me, who doesn’t care what her parents or teachers or support staff for that matter think she’s supposed to be like.

A Pink, Heart-Shaped Object #SoCS

SoCS Badge 2019-2020

A pink, heart-shaped object. That’s what VoiceOver Recognition said about the below picture. It’s my latest polymer clay work in progress. It’s still a work in progress because I intend on sanding it once I get my sanding paper and because I intend on adding an edge of a different color polymer clay, probably purple.

I have been really obsessing over polymer clay lately. I love it. That being said, I keep finding imperfections with my work. This one turned out okay, but the back is a little raw from the parchment paper I used to bake it on. I guess I should’ve used cardstock, but I forgot about that.

Overall, I’m really loving polymer clay though. I think I will develop some level of skill in it one day eventually. This evening, I may try to create a shape without asking for help as much as I did with this one. After all, I don’t need to bake my creations right away and can let them sit there to wait for me to decide whether I want to use them or knead the clay back into a ball.

Back to VoiceOver Recognition. It’s a great feature. However, with my previous creation, it guessed the colors all wrong. You see, the below object is purple and pink and VO said it’s black and red. I think that might’ve been the lighting conditions though. Or something. Not sure.

That polymer clay work, not quite in progress anymore, didn’t turn out as well as I’d hoped. Of course, I recognized that the snake edge I used around the heart shape is all uneven, but it’s also unevenly attached to the heart. I don’t like it, but I probably could not have reused this clay anymore anyway, since the colors had already attached to one another. That is, I could have mixed the colors and tried to see what color got out of it, but well, maybe it’d turn out all brownish. Oh well, now it’s a crooked heart with an uneven snake around it, but it’s a learning curve, right?

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “The last photo you took”.

The Color Of Words #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “color”. I already shared about my perception of color several months ago. Like I shared then, I no longer have the ability to see colors in the physical world due to being totally blind. I used to as a child though and still retain the ability to see colors in my mind’s eye through synesthesia.

I mentioned that color words don’t always correspond to their own color. For example, the word “green” is mostly red. The word “color” itself is mostly yellow. Both o’s are yellow and so is the c. Interestingly, so is the u in the British spelling of the word.

I love some words more depending on their color combinations in their synesthetic presentations in my mind. For example, really I like the British spelling of “colour” more than the American one. The slightly darker shade of yellow for the u adds an interesting shade to the word that makes it somehow more appealing. Same for the word “synaesthesia” in its British spelling. I don’t honestly think there are many words whose American spelling appeals more synesthetically to me than its British spelling. Then again, I am used to mostly using American English on my blog, so that’s what I’ll do.

Fight for the Light #SoCS

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

I Am a Rock #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “roc”. I didn’t know that even is a word, but we can use words with “roc” in them too. I was immediately reminded of “rock” and then of the Simon & Garfunkel song “I Am a Rock”. As I assume most of you will know, it goes like: “I am a rock, I am an island. And a rock feels no pain, and an island never cries.”

This reminded me of the fact that, at around age thirteen, I would describe my class as a country with lots of states and one of them, me, would be an island. Think Hawaii. This, of course, symbolized the fact that I felt like an outsider or even an outcast in my class.

One day, I showed a girl in my class the piece about the island. This girl promptly decided to type on my laptop and let my text-to-speech read: “Astrid is my friend.” She probably felt pity for me, as the friendship never lasted. It was rather based on rules, as was my entire class’s associating with me.

Like, before I found my way around the school by myself, classmates had to sighted guide me around. There was an entire schedule which had the girls be sighted guide and the boys carry my backpack, until I decided, with a little nudging, that I could carry my own backpack. I mean, yes, it was heavy with my laptop and all, but so is every early secondary schooler’s backpack. From then on, the boys would sighted guide me too.

This meant I had to sit with them during recess. After the island story incident with my “friend”, she and her clique allowed me to sit with them everyday during recess even if it wasn’t their turn to be sighted guide.

At the beginning of my second year at this school, I decided I’d had it with sighted guides and especially with the schedule. I tried to find my way by myself, often struggling, but this was better than to have people assigned to me who didn’t want to associate with me. Quickly, that became the entire class, including my “friends”.

I am a rock. I am an island. And a rock feels no pain. Literally. By the end of my second year in this school, I had mastered the coping mechanism of detaching from my surroundings and myself. I felt like I lived in a movie. I still feel that way at times, even though I have no need (I hope) to escape my current life.