Poem: Locked Up Inside

Posted on by Astrid

In my bubble
I sit
Staring out
At the world
Outside

From around me
I hear
People talking
To me
But I can’t respond

Through the invisible wall
I try
To reach out
To someone
But I can’t

A tight grip
Of panic
envelops me
Because I know
I’m locked up inside

I have had the concept of being “locked up inside” in my head for a few days now. I first came across the phrase in an E-mail support group for parents of children with selective mutism, a disorder in which a child is unable to speak in certain situations due to intense social anxiety. I have never had this diagnosis, but as a teen and young adult, did experience periods of mutism due to anxiety and dissociative freeze responses. I use the term “locked up inside” for a feeling of intense anxiety which causes a freeze response that leads to an inability to speak and sometimes move. The feeling of being “locked up inside” is particularly frequent and intense lately.

I am linking this poem to dVerse’s Open Link Night.

Five Favorite Feelings #5Things

Posted on by Astrid

Okay, this is going to be a quick post. I want to write, but honestly have little idea what about. For this reason, I am taking up DrTanya on her #5Things Challenge. This week, the topic is favorite feelings. Here goes.

1. Delight. When I find myself in a happy flow, I can truly be delighted at things I do. I love this feeling of high energy combined with joy.

2. Inspiration. I truly love it when new ideas keep flowing. Currently, this is not the case, as you might guess from my needing to go with a meme for a blog post. That is, in the writing department, I’m not too inspired. In the crafting area, I definitely am.

3. Gratitude. It’s so great to be able to feel thankful at every possible opportunity. It is also a feeling I find is relatively possible to cultivate. In addition, I truly appreciate it when others show gratitude towards me.

4. Satisfaction. When I’m satisfied with something I’ve accomplished, it truly makes me feel great. Unfortunately, I’m a bit of a perfectionist, so I am not easily satisfied with myself.

5. Active acceptance. This means accepting a situation as it currently is, but being open to the possibility of being able to change it. It is walking a fine line between resignation and resistance. This is probably the hardest attitude to achieve for me, but I’m working on it.

What are your favorite feelings?

Bookish (And Not So Bookish) Thoughts (May 7, 2020)

Posted on by Astrid

I haven’t felt inspired to write all day today. That’s weirdly sad. I mean, before I went on this writing spree at the end of March, I sometimes didn’t write for nearly a week and now I’m feeling disappointed at not having a topic to write about by morning. I did get my writing mojo back in late afternoon. I’m joining in with Bookish (And
Not So Bookish) Thoughts. I think Christine of Bookishly Boisterous intended this as a meme anyway, so I can join in.

I finally finished Wonder by R.J. Palacio yesterday. I originally wanted to write a proper review, but can’t without it probably containing spoilers. So be warned.

Let me say this book had my feelings all over the place. I was triggered by Via’s feeling like everything was about Auggie. This resonates with how my sister felt about growing up with me. I felt tears of joy when reading Miranda’s part, because she showed such pure love to August. Then at the end, when everything is fine and everyone sticks up for August, I felt a pang of jealousy. I mean, my school was welcoming too, but mostly so they could pat themselves on the back for having accepted a blind student. I ended up giving the book a 4-star rating because of these mixed feelings.

Now I’m reading Wink by Rob Harrell. It’s a bit of a similar themed book, but so far not as evocative.

I also downloaded Rules for Being a Girl by Candace Bushnell and Katie Cotugno. I saw it on Rebecca of BookishlyRebecca’s Goodreads, which was linked to her blog. I’m probably going to link my Goodreads here too.

I’m also further digging into The Empath’s Survival Guide by Judith Orloff. I’m beginning to think I may be just a highly sensitive emotional mess, not an empath. However, it’s still an interesting read.

In other news, yesterday was a truly great day for my blog stats. Not that I care much about them, but then again sometimes I do. I am truly loving being able to interact with all my readers. I can’t believe how for years I rarely replied to comments. I believed at the time that my stats would be screwed if half the comments were mine. Well, whatever. I apparently cared more about my numbers then than about genuine connections, which is weird at best.

How is your (reading) life going?

Today I Feel…

Posted on by Astrid

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Posted on by Astrid

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Panicked Ramble

Posted on by Astrid

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

What Emotions Drive Me to Bad Habits? #Write31Days

Posted on by Astrid

Welcome to day eight in #Write31Days. Today’s post, like last week Monday’s, is yet again focused on emotions. I took another prompt from The Self-Exploration Journal. It asks what emotions drive me to bad habits.

I have a few self-destructive habits, some of which I engage more regularly in than others. For example, I overeat on average at least once a week, but only self-injure by cutting occasionally. Then there are these little habits that I engage in so often that I barely even notice them anymore, such as nail-biting or most recently teeth-grinding. Just a few minutes ago, my husband asked me to stop grinding my teeth.

Basically, I can be pretty sure that the type of emotional state that drives me to engage in all of these bad habits is stress. Stress is usually thought of as a type of anxiety, but it is not necessarily fear that drives it.

I tend mostly to engage in the little bad habits, like nail-biting or teeth-grinding, when not feeling much of a clear emotion at all. Rather, I tend to be in a state of worry, thinking in circles.

When emotions do reach the point where I notice them, they are pretty close to boiling point already. When this happens I may engage in self-harm behaviors or overeat.

When I look closely at what emotion causes me to engage in these self-destructive behaviors, I see that it is usually a sense of loneliness. Loneliness is not an emotion or so I’m told. At least it isn’t a primary emotion. Sadness is and that’s often what’s underneath this sense of loneliness.

Anger can also drive me to engage in self-destructive habits. Usually though, I am angry at something too minor to matter. The emotion underlying this anger is once again sadness.

What emotions drive you to bad habits?

#WeekendCoffeeShare (September 8, 2018)

Posted on by Astrid

This week, I’m once again joining in with Weekend Coffee Share. On the surface, I don’t have much to write about, but I’ll try anyway.

If we were having coffee, I’d ask you how you have been. It’s sometimes hard for me to remember this, but when I’m feeling like I’m now, I’d genuinely much rather hear about your day than share about mine. Since I don’t know who will be joining me for coffee, as this is just a writing exercise, this is rather fruitless though.

If we were having coffee, I’d try to share how off I’ve been feeling lately. Most people notice right away, but it’s hard for me to put my finger onto what is going on. I guess I may be in a prolonged freeze mode. This is one of Pete Walker’s four types of trauma responses and it describes a state of dissociation. I’m so disconnected from myself that I can’t even tell who I am right now. I mean, yes, I respond to the name given to me at birth, but I hardly connect that name, or any of y alters’ names, to my current experience.

I don’t know what triggered it. I’m not having flashbacks. I’m not even having memories that aren’t full-blown visual flashbacks. Rather, I retreat into my own inner world with a book. Currently, this is Where Has Mummy Gone? by Cathy Glass. This is a very sad foster care memoir. I know I’m supposed to feel sympathy for the child who is the main character in this memoir and on some level I do, but it’s all very distant.

If we were having coffee, I’d then chatter on about random happenings. I’d share that I did finally go on the elliptical yesterday evening after not having been on it in over a week. I’d share that we had pizza for dinner yesterday. It was salami day or so I’ve heard, so I had a delicious salami pizza.

If we were having coffee, ‘d tell you that yesterday marked 130 years since the first incubator was used for a baby. My mother posted that on my timeline on Facebook last night. Since I was born prematurely and spent time in an incubator myself, this is rather intriguing to me.

If we were having coffee, I’d try to round up the conversation then, because I feel my shoulder hurting badly, so I want to do some exercise.

How is your weekend going so far?

Tuesday Ramble

Posted on by Astrid

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

Angry

Posted on by Astrid

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.