#IWSG: Quit Writing?

Posted on by Astrid

IWSG

Hi everyone. It’s the first Wednesday of the month and this means it’s time for the Insecure Writer’s Support Group (#IWSG) to meet again. I’m more than happy to report that I didn’t get booted for my flaky post last month.

I’m feeling quite motivated to write as of late. It’s still mostly regular posts on this blog, but that’s okay. I know, I know, I resolve each month to expand my writing horizons by doing more poetry and fiction writing. I’m also resolving this time to set some time aside for a daily freewriting session in the app Day One. My yearly subscription payment is due at the end of the month and I haven’t made use of it in a while, so now’s the time to get back into things.

Now on to this month’s optional question: what would make you quit writing? Seriously? I guess my death or the loss of my hand function, though if I lost the ability to type, I could possibly still dictate my writings. That being said, I’ve always said that loss of hand and particularly finger function would majorly impair my quality of life, since it’d not just mean an inability to type, but an inability to read Braille as well.

I have had times when I’ve taken a break from blogging and occasionally even writing in general. The longest I’ve gone without blogging since I got an Internet connection has been six months in like 2012. Since I started this blog nearly three years ago, not a week has gone by that I didn’t write at least one blog post.

Even before I had a blog, I had a diary and wrote tons of short stories and attempts at young adult novels. I honestly don’t think that, even if I ever were to stop blogging, I’d really stop writing for myself.

What would make you quit writing?

Historical Events

Posted on by Astrid

Today, in the journaling app Day One, the daily prompt was to write about the historical events you remember. I used to be a big news and politics junkie as an older child and teen, so I remember quite a few events.

I was born in 1986, so technically might’ve remembered the fall of the Berlin wall in 1989, but I didn’t. In fact, the first important historical event I remember was the Gulf War of 1991. At the time, I listened to the radio and heard about it, but erroneously thought that Iran, Iraq and Kuwait made up Ukraine. I don’t know what news event there was about Ukraine at the time, possibly the fifth anniversary of the Chernobyl nuclear disaster.

When I was nearly eight, I remember my parents taking me to the polling station for the national election in 1994. I remember both of the names of the candidates my parents voted for. I also clearly remember learning about the “purple” government, which meant that the Labor Party and the conservative party VVD were for the first time forming a coalition. Another party, D66, was joining them too and I asked what color they were and why that party’s color wasn’t represented in the mix. My parents explained that mixing too many party colors would make brown and that’d be a Nazi color.

When I became a teen, I got involved even more into politics. I obviously remember 9/11 when I was fifteen and the murder of Pim Fortuyn eight months later. That year’s election, nine days after Fortuyn was killed, was the most memorable election of my life. I remember kind of aggressively persuading my father to vote for the Socialist Party rather than GroenLinks, the leftist party he normally votes for.

During the fall of 2002, I myself joined the Socialist Party. I was a semi-active member in my local affiliate for a while. Still, I gradually lost my interest in politics and important news events. I left the political party in September of 2007, half because I didn’t like its rather undemocratic treatment of its members and half because I was tired of politics.

Since then, I haven’t really been following the news or politics much at all. I do find it intriguing to be a witness to the coronavirus crisis even though I’d rather have gone on like old normal.

As a teen, I wasn’t affected by the impact of important historical events. Like, I always wanted the stock prices on the AEX to be low for some reason I still don’t comprehend. Now, I understand the impact of economic crises more than I did before and it scares me. That’s why I’d rather put my head in the sand and not watch the news.

What historical events do you remember most?

My Declaration for My 36th Year of Life

Posted on by Astrid

Like I mentioned before, I turned 35 on Sunday. A few months back, I had downloaded a birthday journaling tool from the International Association for Journal Writing website. I didn’t really get to journal about any of the prompts in it, but one that stuck out to me is to write your declaration or decision for the upcoming year. It sounds a bit like an affirmation, but I’ll not just repeat it to myself. Rather, in this post, I’ll describe steps I can take to make my declration work.

First, my declaration is: “I will thrive, not just survive.” I will focus the 36th year of my life on improving the quality of my life in some major areas.

I have been debating whether in the long run, I want to stay in my current care home. I’m not yet completely sure, but my aim is to focus on getting as close to my ideal as I can get. However, it may take several more years to find me a more suitable care home, if we can find one at all. This means that I’ll need to focus on improving my quality of life with the resources I have available now.

To make this happen, I’m trying to focus on moving from anxiety and obsessiveness into some level of enjoyment, possibly even happiness. I took the first steps by writing down some things I may want to improve on during my day activities time. For example, I’d like to learn to do some more activities other than blogging and reading by myself, so that when staff leave, I am not completely left out. Today, I tried to work on a bracelet on my own and it worked.

This evening, some kind of staff supporter came round my care home to observe the staff as they care for several clients, including me. She recommended that, when staff leave me, they give me a soft toy to indicate I’m not alone. This also might ease my obsessign over the time they’re going to leave.

I also will be looking into starting some “bigger” project, like a course, again. I don’t think I’ll want to do Open University again, but maybe some hobby-related course.

I’m also thinking of acquiring a small fridge and simple microwave for in my room. That way, I will be able to make soap and body care products in my own room rather than in the overstimulating kitchen, so I should hopefully be able to do more by myself. Then, I’ll hopefully be more satisfied in my activities.

To sum it up, I will try to focus my attention away from ruminating about the past or future and onto enjoying the present. This is probably the hardest part. I am reminded of a Center for Consultation and Expertise case video about a young woman with lots of challenging behavior, for which the staff kept countless checklists of her behaviors etc. They were aiming to manage her behavior, but once they moved away from this and onto looking at how she can have a good day, the behavior also decreased. This might be the case for me too.

Looking Forward to Summer

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to share what you’re looking forward to about summer. Summer is my favorite season. I just love the sunshine and warm temperatures, even though I don’t care for temperatures above 30°C. In 2018 and 2019, we had a lot of crazily hot weather, with temps rising to nearly 40°C on several days each year. I don’t like that. However, usually our summers are warm but not hot.

The main thing I look forward to each year, is my birthday. My birthday is this coming Sunday – I’ll be 35. This year, I don’t really have much planned and am a bit apprehensive about it, but I bet I’ll still have fun once it’s there.

On Saturday, my husband and I are going to visit my in-laws. My husband talked about asking his Mom to make lasagne. Without celery, mind you. Yes, she usually puts a small amount of celery in her lasagnes and, while I am not so picky anymore that I’ll fish it out of my serving, I don’t like it at all.

I haven’t asked my mother-in-law for any specific present, so I’m not sure what I’ll get. Last year, she gave me a giant teddy bear.

On Sunday, my actual birthday, my parents will visit me and my husband in Lobith. They haven’t seen the house since we bought it, so my husband will likely have a lot to show them. I’m a little worried about topics to talk about, as I don’t want to cause tension by bringing up my own issues. My staff suggested I tell my parents that we went to the monkey zoo a few weeks ago or the like.

I asked my husband for an outdoors side table for on my balcony. From my parents, I asked for jewelry-making supplies. I really hope my creative juices will be flowing again soon.

I will probably return to the care facility by about 6PM. During our evening coffee break, I will treat my fellow clients at the care home to custard cupcakes or nut bars (those who can eat those).

As for my plans for the rest of the summer, I am hoping to visit some new places, like the local large playground. Aside from social distancing, most restrictions due to the pandemic will be lifted by this Saturday (hopefully not to return again by the fall). I also hope to go on many walks, as well as sit on my balcony some more.

What are you looking forward to this summer?

Mama’s Losin’ It

When I Can’t Sleep

Posted on by Astrid

Today, Sadje asks in her Sunday Poser what we do when we can’t go to sleep. Now I must say I only occasionally suffer with insomnia nowadays. As a child, teen and young adult, I’d suffer with it a lot more often. When in the psych hospital, I even tried a handful of different sleep medications until they all stopped working and I just accepted lack of sleep. The one sleep medication I remember that actually worked for a relatively long while if I didn’t use it more than twice a week or so, was zolpidem. I liked that one best, but I actually still have a kind of psychological longing for the floaty feeling it gave me.

Anyway, now that I only occasionally suffer with insomnia, I usually still don’t like to just lie there and do nothing. The nice, floaty feeling on zolpidem would’ve helped with that at least. Rather, I usually get up and do some reading on my phone. Of course, I know that electronics are supposed to keep you awake and this may be the case for me even without the blue light (being that I keep my screen completely black). Indeed, I don’t usually find that reading helps me fall asleep, but at least it helps me pass the time until I’m naturally tired enough to fall asleep. Or until it’s morning.

I wanted to go off on a tangent here and talk about other sleep issues too. The most annoying of these is finding myself in a half-sleeping, dreamlike state where my mind seems to want to do things but my body won’t. This experience, which some people I know have said might be sleep paralysis, is extremely frightening. It usually happens when I take a nap, which is why I avoid taking naps if I’ve had this experience recently.

Which gets me to fear of sleep due to nightmares. I experience nightmares that actually affect my daytime functioning at least a few times a week. I don’t always remember my nightmares exactly and I’m not even sure those I do remember count as nightmares, as sometimes when I’m in them they aren’t fear-inducing. They however do trigger my PTSD flashbacks, if that makes sense. They usually are very vivid. I have had this issue more since starting on my antipsychotic, but now that I think of it, it’s probably more of an anxiety or PTSD symptom. I am really hoping the topiramate, which I’ll hopefully be starting within the next week or two, will help with this.

Final Exams

Posted on by Astrid

Today, this year’s high schoolers should have heard whether they passed or failed their final exams for graduation. This inspired me to use one of Mama Kat’s writing prompts for this week, which is to write a post on the word “final”.

It’s been sixteen years since I graduated from high school. At the time, mobile phones were already in use, but they weren’t as popular as they are now and smartphones didn’t exist. Nonetheless, we were instructed not to text each other that we’d passed. After all, those who had failed would be called first and then those who had passed their exams would be called in alphabetical order. Texting each other would ruin the surprise effect. All of us would receive a call between 12:00 and 1:00PM. Since my last name starts with a W, I knew that I’d either be called at five past twelve if I’d failed, or at close to one o’clock if I’d passed.

Even though I had gotten pretty good grades on my school-based tests, which would make up half of my final grade, I had no idea how I’d done on the final exams. You could check your answers with a grading sheet available online once the exams were over. I didn’t do this with most subjects, I think. I did it with English though.

I at the time had an 8.1 out of 10 GPA in English. An 8.5 would be a nine. Though six is enough to pass, I badly wanted the nine. This meant I’d have to have an 8.9 on my final exam. When I checked, I found out that, most likely, I would not reach this. It however also depended on how strictly they were grading. After all, if most students scored lower than expected, they’d use a less strict grading system. If the grading folk were less strict than expected, I could get my desired 8.9.

Once the day we would be called arrived, I sat by my home phone from 11:30 until I was being called. I got called shortly before one o’clock: passed!

We were expected to be at school that afternoon to look at our grades. I had a surprisingly high grade on my geography final. That one had been adapted by my teacher and I’d taken it orally due to my blindness making the regular final inaccessible. As it turned out, the independent review teacher who had sat in on my final too, had been so incredibly impressed with my (quite mediocre) performance that he’d upped my grade. This made me feel guilty, but thankfully none of my fellow students knew.

As for English: the grading folk weren’t so kind this time. I passed with an 8.8, so got an eight out of ten GPA in English.

I, in fact, only got sevens and eights in all subjects, seven eights and eight sevens. This just about meant I wouldn’t be able to get accepted into selection-based college programs. Then again, I wasn’t intending on studying medicine or the like. In fact, now I’m more than grateful that I don’t need my high school diploma for anything anymore. I don’t even know where it is, nor do I care.

Mama’s Losin’ It

The Shifting Image of My Care

Posted on by Astrid

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

Scars Remind Us #WQWWC

Posted on by Astrid

“Scars have the strange power to remind us that our past is real.” ― Cormac McCarthy, All the Pretty Horses

Today’s topic for Writer’s Quotes Wednesday Writing Challenge (#WQWWC is “Healing”. I originally intended to post another quote, but then I had to address the fact that the source person isn’t an author. Not that I’ve read anything by Cormac McCarthy. Frankly, I just stumbled upon this quote on Goodreads by looking for quotes on this topic. However, the quote really speaks to me.

My psychiatrist’s appointment last week opened me up to a whole lot of trauma memories. Up until that point, I hadn’t thought that anyone would ever believe me again, after my dissociative identity disorder and PTSD diagnoses had been removed and everyone had basically decided I wasn’t a real enough trauma survivor at least until or unless I got re-assessed. That’s how I interpreted my psychiatrist’s insistence that I get evaluated for dissociation when I was still living with my husband. She was a great psychiatrist, but she never quite considered helping me with my trauma symptoms without a diagnosis. Then again, neither did I. Now I may even be ready, sort of, to ask for the re-evaluation myself.

The memories have been coming flooding back at me over the past week or so. I mean, I had flashbacks before, which is why the psychiatrist proposed I start topiramate, but they weren’t as bad as they are now. Unfortunately, I won’t be able to start on the topiramate until next week, as my care facility’s physician is on vacation and she needs to okay the prescription.

That being said, the fact that my psychiatrist is willing to prescribe me this medication specifically for my trauma-related symptoms, to me means she takes my trauma seriously. No-one before has ever suggested I try any medication or therapy for my trauma without my first going through the assessment process. Which, to me, means needing to prove my past and the resulting experiences are real first. Well, I can’t, because my dissociation makes me doubt my own reality.

Besides, one of my core traumas is not being validated for who I am. This has meant I’ve had to wear one mask or another, or sometimes several at once, my entire life. For this reason, I do not know who I am at all and constantly doubt my reality of experiencing post-traumatic stress symptoms.

In this sense, it is rather hard to process that most of my trauma didn’t leave physical wounds and that the traumas that did cause physical wounds, aren’t the worst ones. If my traumas had left physical wounds, there would be physical scars to remind me that the traumas were real. Now, there are mostly just emotional scars. I am still learning to validate the experience of my emotional wounds.

Mother’s Day

Posted on by Astrid

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

Recovering From Autistic Burnout

Posted on by Astrid

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.