#IWSG: Keep on Writing!

Posted on by Astrid

IWSG

Today is the first Wednesday of May and this means it’s another Insecure Writer’s Support Group (#IWSG) day. I didn’t really understand the optional question for this month, but I have enough to share without answering it.

You see, I finally did pretty well in the writing department! Firstly, I finally completed the #AtoZChallenge for the first time in four years. I loved it actually. Of course, occasionally it got a little boring and difficult at the same time, but overall it was quite a cool experience. I got to know a few bloggers I hadn’t known before or only four or five years ago when I did the #AtoZChallenge on my old blog. It’s so cool to see bloggers actually keep blogging year after year.

Secondly, I wrote a few poems. I actually had some more in my head that I haven’t written down yet and I may’ve forgotten. I find it pretty easy to come up with particularly syllabic poetry. Not wanting to brag, of course, since I honestly don’t want to claim my poems are any good. However, the words flow quite naturally.

Next time it’s open at dVerse, I might try my hand at a quadrille. I had no idea what one was and thought it had a lot of rules. Apparently not.

I also wrote my very first piece of flash fiction. Looking back, I should have explained a little more, as my piece left a lot to be filled in by the reader. That was on purpose, but it did make it a little weird maybe.

I look forward to keeping up the writing mojo in May. Of course, I know I’ll face writer’s block, lack of motivation or both someday, but I hope I’ll continue to be inspired and motivated for a long time to come.

When I Was Five

Posted on by Astrid

This week it’s 29 years ago that I spent a week in the children’s hospital with a collapsed trachea. It closed up on the night of April 28, 1991, the night after we’d celebrated my mother’s birthday, two months before my own fifth birthday. I was unquiet all night or so I’m told, getting up to go to the bathroom a dozen times. Eventually, my parents discovered what was going on and I was rushed to the hospital.

Thankfully, my trachea opened again within a day or two. I don’t know whether I had to be on a ventilator. In fact, I remember very little of these first few days. Then, on May 3, I had surgery to take out my tonsils and adenoids. That surgery had been scheduled for May 21 at another hospital anyway, but the children’s hospital could fit me in earlier now that I was there anyway.

After surgery, I had to stay in the hospital for another few days because I had a breathing tube inserted. That is, I’m not 100% sure the breathing tube was before or after surgery. I remember trying to talk through my tube, which was pretty much impossible.

This was probably also the time in hospital that my parents brought me their supermarket’s brand of peanut butter to eat, as I wouldn’t eat the premium brand the hospital had. Can you tell I was spoiled or autistic or both?

Finally, I got home on May 7. I was already a calendar freak, so I actually remember this without having been told.

As I write this, my inner five-year-old is trying to speak up, but she can’t. I don’t know whether this hospital stay was particularly traumatic for me, even though the going to the bathroom compulsively became a habit of mine in my teens. I may have made Lisel (that’s my inner five-year-old) up, because after all I remember this particular hospital stay so well.

I do think falling ill in early 1992, was more of an adverse childhood experience for Lisel (or me, if you think Lisel is made up). I remember I had some form of the flu, but in my own memory, it wasn’t entirely medically explained. My parents will probably say I’m trying to find clues that aren’t there so am making them up. I mean, they never talked about this experience when, in my teens, I was trying to remember when my negative mood started. They claim, as did I at the time, that it started when I was seven and having to learn Braille. In other words, I was going blind and I knew it but refused to accept it, so was becoming defiant to show a middle finger to the world. It’s easy to say it doesn’t matter. In a way, it doesn’t, but too often, I feel my parents are hiding the truth from me as a way of denying that I had significant mental health issues before the all-important age of seven. I mean, if my problems started at seven, I cannot possibly be autistic or have a dissociative disorder or anything originating in early childhood, right? Besides, I could have been old enough to be manipulative.

Am I being manipulative indeed? Or am I an early childhood trauma survivor? I don’t know and I’m not sure Lisel knows the answer.

Joining in with V.J.’s Weekly Challenge.

How COVID-19 Changed My Outlook on 2020

Posted on by Astrid

Yes, I’ve said it before, but can you believe it’s May already? Four months have passed since the beginning of 2020. Time flies when you’re having fun, they say. Well, time also flies (and drags at the same time) when in a pandemic. Today I’m joining in with Finish the Sentence Friday (which is open all week), for which the question this week is how the pandemic changed your word of the year.

In January, I chose the word Wellbeing as my word of the year for 2020. I was at the time already a bit angsty about it, as I was in a bit of a hypochondriac phase and thought that if I chose this word, I’d die this year or something. Some kind of reverse law of attraction.

Still, so far, my word is still pretty true. I am taking preventative measures to hopefully keep the coronavirus out of my body. Just yesterday, my staff started taking everyone’s temp twice daily with a no-contact thermometer. Since the virus hit the home below mine, I have been a little more scared. At the same time, I still often avoid thinking about the pandemic too much. Actually, I realize that, as the month of April continued, I included fewer and fewer references to the pandemic in my posts.

I had a few hopes for 2020 too. The first one was to keep my marriage strong. I felt I needed to learn to travel to my husband for this, as I thought ultimately living apart wouldn’t be very good for our marriage otherwise. While I still feel I need to learn to travel to him independently once the crisis is over, I have learned that our marriage can survive a time of not seeing each other. It’s hard, but it’s doable.

Honestly, I must say the pandemic has given me a clearer focus on what matters most. I try to appreciate my husband more. After all, he isn’t a given. One day one of us might catch the virus. Besides, we can’t see each other now and it isn’t altogether logical that a marriage survives this.

On my other goals, I did pretty well so far. I’m actually loving it. I don’t know whether the crisis is the reason I’m doing so well, but I’m pretty sure it’s one of the factors.

#IWSG: Writing in Times of Corona

Posted on by Astrid

Today is April 1 and aside from the start of the #AtoZChallenge, it’s also the monthly Insecure Writer’s Support Group (#IWSG) day. I skipped it last month, but today I want to join back in.

I did a lot of writing in the past month. What else is there to do? I mean, I could have spent my month reading, but I still usually read partly for the purpose of blogging about it. So I spent my month writing.

The world pretty much turned upside down in the month of March. Early on, I didn’t see a month full of writing on the horizon at all. Neither did I see COVID-19 coming. In the first week of March, the press at least here was still not taking COVID-19 too seriously. The first cases in the Netherlands were confirmed, but for the most part I still thought this was a far-off thing. A satirical site had a test online about when YOU would contract coronavirus. I had presumably contracted it two days before while trying to stockpile the last packages of fresh meat. I joked about it when having a meeting with my community psychiatric nurse and the facility’s behavior specialist on March 6. We even still shook hands then.

On March 16, schools and restaurants closed for three weeks. A week later, we went on “intelligent” lockdown. This means we are encouraged to stay home and gatherings are prohibited, but going outside isn’t strictly forbidden. My facility implemented a no-visitors policy on March 25.

Just yesterday, we were told that schools will remain closed until at least April 28. Restaurants are closed till June 1 I think.

So, while I’m in self-isolation, I do still try to occupy myself. It’s good that I like writing, huh? For the month of April, I have lots of things I want to write about. I’m participating in A to Z, of course, but I’ve already seen some other prompts that inspire me.

How are things in your part of the world?

Writer’s Workshop: If I Could Change One Thing About Myself

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Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It

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

Taking a Risk

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Today I’m joining in with Five Minute Friday (FMF). The prompt this week is “Risk”.

Last month, like I shared in passing on this blog, I finally opened up to a behavior specialist at my care facility about my struggles. I was really putting myself out there. In my mind, I took a huge risk, because I felt that if I was open about what I really needed, I’d be kicked out of the care facility. I wasn’t.

Then two weeks ago, as I discussed my issues with my community psychiatric nurse (CPN), she started to suggest I live in an apartment building for autistic people. That didn’t sit well with me. I mean, I don’t care who my fellow clients are as long as I get the support I need and I won’t get that in an apartment building. I mean, of course I do somewhat care about my fellow clients, but not in the sense that I need to be able to get along well with them. They aren’t my friends, after all.

I still feel I’m taking an immense risk by opening up about my feelings. I did so again last week, when I asked the staff at my facility to ask the physician for a script for some tranquilizer. The reason is that I’m due to have an old filling repaired at the dentist’s next week. The area surrounding the tooth is already inflamed and I experience considerable pain from it, so I know it’s going to be hard going in and having it fixed, despite the option of getting a topical anesthetic.

So I put myself out there again and asked for something to calm my nerves. Initially, the doctor told me to take 0.5mg lorazepam. Well, that’s not going to work. So I felt off again, like I was being a drug seeker and a burden. I’m used to being seen as a burden, after all.

Being genuinely open about my feelings, my needs and even my wishes is a huge accomplishment for me. I’m totally used to being judged. After all, if people really see me, aren’t they going to discover how wicked I really am? Apparently not.

#IWSG: Ready, Set, Write?

Posted on by Astrid

It’s once again time for the Insecure Writer’s Support Group (#IWSG) day. I don’t really feel like checking in on it, but this at least is a monthly reminder to keep at least somewhat focused on my writing endeavors.

This past month was a mixed one when it came to my creativity. Early in the month, I was really inspired and really felt like writing fiction and poetry again rather than just blog posts. I did write one poem and read a ton of them, but my ideas for fiction never made it into actual stories.

I got ahold of a few interesting books on writing. One of them is called Ready, Set, Write and it inspired the title of this post.

Inspired by the advice in this book and others in the Adventures in Writing series, I started stream of consciousness writing in an app called Drafts. Several blog posts and the one poem I wrote this past month, were originally drafted in this app.

Still, I’m not sure I’m ready to actually devote much of my time to writing. It’s a great hobby, but like with everything, I don’t have the patience to practise and want to be at least somewhat proficient at it pretty soon. That’s probably why I keep disappointing myself.

On to the optional question of the month. This month’s question is whether you’ve ever been inspired to write a story based on a piece of art. I have not, as I am very artistically ignorant. I tried to blame it on my blindness, but then I realized there are other works of art besides paintings.

I did however very often base my stories on the fiction I read. This sometimes led to plagiarism. My best story yet, which should’ve become a young adult novel but never got finished, was inspired by a book about a teen whose mother had multiple sclerosis. It followed the same subject but its plot was very different.

How about you? Do you base your writing on works of art?

A Letter Explaining My Life Right Now

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Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

A Day I Will Never Forget

Posted on by Astrid

I’m a day late with this topic in 7 Days 7 Posts. The Tuesday topic didn’t appeal to me and besides, I was really anxious then. Yesterday I had a lot of meetings to discusss my anxiety and the reasons for it. I made it clear that I really needed some more care and particularly more consistency and clarity in my day. I went to bed at 8:15PM, having taken an Ativan to help me sleep.

Yesterday’s topic was to describe a day you’ll never forget. I already described how I met my husband sometime during the #AtoZChallenge last April. Another day I will never forget, though for less pleasant reasons, is the day I landed in crisis in 2007. I probably described that day a few times before already, but right now I can’t find where. If you’ve read this before, I apologize.

On November 2, 2007, I was in my parents’ city to get a landline phone I wanted to use in my student apartment. The reason I wanted a landline was the fact that I was scared of mobile phone radiation causing Alzheimer’s. It’s weird that now I use my iPhone like all the time and don’t worry about it much.

I had come to my parents’ the previous evening and was planning on going back home to Nijmegen that Friday afternoon. However, on the train station, I had a meltdown. The police were called and removed me from the station.

I went to the independence training home where I used to live until that summer. I wasn’t really sure what I wanted, but I needed to look up some phone number on my laptop. I knew I shouldn’t go back to my parents’, as they’d probably be angry with me.

After having called whoever I needed to call, I wandered around the training home neighborhood for some hours, not sure what to do. At one point, a fellow client at the training home realized I was struggling, so she offered me to come into her apartment and stay for the night, so that we could find a more long-term solution the following day. However, the staff came to her and told me to leave. They weren’t going to take responsibility for me.

At that point, I had another meltdown. I walked to the nearby bus stop, catching the 8:01PM bus to the train station. In my memory, it was still light outside, even though that’s not possible at such a time in early November. I called my support coordinator to let her know I was going to commit suicide. The bus driver overheard me and called the police.

I was terribly scared, because the police had kicked me off the train station that afternoon. However, I willingly went with them to the police station. They called someone called a community physician, who is in charge of triaging people not known to that city’s mental health agency. He was a really blunt man, telling me that I made people feel responsible for me in a way as if I was just seeking attention. He even used a kind of threatening voice when he said he was going to call the crisis service. I didn’t mind.

The crisis service psychiatrist and CPN came out to the police station. After assessing me, they asked me what I wanted. To this day, I’m not sure whether I really didn’t know what I wanted or felt too embarrassed to ask for help. After all, when talking to the behavior specialist for my current care facility yesterday, I also said I didn’t know what I needed even though I did. Anyway, the psychiatrist proposed that I be admitted to the mental hospital and I agreed.