#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

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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.

Three Wishes

Posted on by Astrid

I’m trying to participate in 7 Days 7 Posts organized by Jessica from Daysixtyfive. That is, I won’t promise I’ll complete the challenge, as I’m having a nasty cold. Yes, again. I hope I don’t end up with a fever this time. That being said, if it doesn’t get worse than it is now, I’ll probably be able to do fine.

Today’s topic is about wishes. You have just been granted three wishes. What are they?

I initially thought that we’re supposed to have big, world-changing wishes like peace everywhere. Then I saw Jessica’s post and her first two wishes are just for herself and her family. Maybe we all are self-centered like this, so I don’t need to feel shameful about wishing stuff for just myself. Here goes.

1. Physical and mental wellbeing. I purposefully wish for wellbeing, not health, as the genie might interpret health to mean I want to get cured of my disabilities. I don’t. I want to remain blind and autistic and having mild cerebral palsy. I even don’t want to be cured of my dissociative disorder, in that I want to remain multiple. What I do want is to be is stable mentally, less anxious. I also want my chronic physical ailments to go away. And while we’re here, I wish this nasty cold away and not to return.

2. To be close to my husband. I would wish for a suited care facility in my husband’s area, so that I could visit him more often. A suited care facility would be much like the one I’m in now, with a day center on grounds, lots of sensory equipment, the staffing level for me to be able to enjoy regular leisure activities, etc.

3. Unlimited ParaTransit access. This was the first that came to mind after a care facility close by my husband. Bigger things like wellbeing hadn’t even come to mind yet. I could wish for an endless stream of money, so that I can hire my own taxi drivers, but I don’t think I’d feel any better then. However, the ability to travel wherever I want without having to worry about public transportation, is very high on my list of desires. Interestingly, for the cost it took to make all trains and buses wheelchair-accessible, the government could have made this a reality for all majorly disabled people.

What would you wish for if you were granted three wishes?

Carol and Jane

Posted on by Astrid

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

My 2020 Word of the Year

Posted on by Astrid

And I finally feel well enough to write what I hope to be a coherent post. Last Wednesday, I wrote one too, but I barely remember it and someone commented that she could feel the flu through the screen. I had a relatively mild case, as I only ran a fever for two days I think. I still have a sore throat, some mild nausea and feel generally unwell, but I’ve at least been able to stay up all day.

We’re already almost half through the first month of the year. This week though, Kristi over at Finding Ninee is hosting Finish the Sentence Friday with the theme of your word for the year. These are, like I said last year, always posts I dread making, as I’m never quite sure life will happen as I imagined it would and then I end up beating myself up. Like, in 2018, I chose “Be” as my word even though it was to be the most eventful year in quite a while. I was just very naive. This year, if I choose a similar word, intending life to go on as it has for the past few months, I’m sure I’m creating a bad omen. Then no doubt will I be kicked out of the care facility. Yes, I’m pretty superstitious like that.

So for this year, a lot of words floated through my mind. “Mindful” and “Calm” did, but I was sure the passivity of them would create a bad omen. “Growth” doesn’t feel right, as that seems like the opposite in some way, requiring me to make progress in some yet undetermined respect.

So, the word I’m picking for this year just popped up into my mind as I sat down to write this post. It is: WELLBEING.

Now let’s hope I don’t get into some type of life-altering health crisis this year. Then still if I do, I can still focus on my wellbeing within the limits my body will set.