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

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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

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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

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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

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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.

A Bottle of Hope

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

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.

It May Be May #SoCS

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It may be May already, but the weather’s still not that good. Though it is a little sunny with some clouds here, the temperature’s still low at a high of 12°C today. It’s supposed to rain all of next week and the temperature isn’t supposed to get above 16°C and that won’t be till next weekend.

The month of April was very chilly too, though it wasn’t too rainy. Oh, how I want higher temperatures!

In May, I usually anticipate summer eagerly. My sister has her birthday on the 13th. This is also when I start counting down to my own birthday at the end of June.

This year though, it doesn’t feel like it’s May already. It feels more like the beginning of March. I’m not sure whether that’s due to the weather or something else. Maybe it’s also because our lockdown still hasn’t eased much and we’ve been in it for so long. I mean, last year we were still in lockdown by early May too, but that one wasn’t implemented until the middle of March. Ugh, I can’t wait for some restrictions to be lifted. Oh well, some were, but I think the infection numbers are still too high for me to take advantage of that. Of course, I’ve been vaccinated and my parents too at least got their first shot. However, my husband and mother-in-law still haven’t gotten theirs. My husband isn’t sure he’ll ever be vaccinated at all.

Ugh, I’m tired of COVID-19 restrictions. I’m pretty sure they won’t work anyway. I mean, the infection numbers and hospitalizations are quite high and we keep getting glimmers of hope that they’re going down soon. I doubt it. I was also scared to find out that there’s an outbreak of COVID in a nursing home even after vaccination. Ugh, I was hoping I’d be protected. This freakin’ pandemic has been going on for so long!

Remember that, in March last year (I was going to write “last March” as if it isn’t past March 2021 yet), I wrote that I expected life to be pretty much back to normal by September of 2021. I honestly don’t believe that and I think neither does anyone else, though some people are still disbelieving when I tell them this pandemic might go on till 2024. That’s what I’ve read somewhere. I really hope that source is wrong.

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

The Most Important Milestone

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

Runaway #SoCS

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.