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.

#IWSG: Breaking a Record!

Posted on by Astrid

IWSG

Hi all! It’s the first Wednesday of the month and this means it’s time for the Insecure Writer’s Support Group to meet. At the moment, my thoughts aren’t with writing really. However, I wanted to share my contribution to the #IWSG anyway.

Last month, I was a real writing ninja. I, of course, participated in the #AtoZChallenge. That did get a bit boring as the challenge proceeded, but I managed to finish it after all. I’m so glad I did, because it gave me real new motivation for keeping up the blogging habit.

Not only did I write the 26 posts for the challenge, but I actually wrote more posts in the month of April than I had in any month before since being a blogger. I published 41 posts this month. Seriously, in all the more than eighteen years I’ve been blogging, I didn’t publish this many posts in one single month!

Blogging aside, I also wrote quite a few other pieces. I have been journaling almost daily for a few weeks now. Sometimes, I just wrote a couple of sentences, but sometimes I wrote more. I have particularly loved expressing my gratitude in my journal. I’ve also loved writing responses to Day One’s daily prompts. Some of them weren’t too inspiring, but some definitely were.

For the upcoming month, I hope to be able to write daily again, be it on my blog or elsewhere. I’d love to make use of the many journaling prompt collections I have. I transferred some from my computer to my iPhone, so that they will be more readily available to me.

Now on to this month’s optional question: has any of your readers ever responded to your writing in a way that you didn’t expect? Well, not really. I mean, I get the occasional critical comment. For example, when I still blogged on my old blog, there was a person who commented on each of my posts mentioning my alters. Their comments invariably stereotyped people with dissociative identity disorder and told me that I was faking having alters and needed treatment for a personality disorder. Well, yes, those comments weren’t what I’d hoped for. Then again if I put myself out there like this, no doubt someone’s going to use it as a way to try to offend me. That’s how the Internet works.

Other than that, the most surprising comments I’ve got were compliments on my creative writing. I know that most people want to build each other up even if they don’t fully mean it, but still, it’s quite cool to get a compliment on a poem or piece of flash fiction. Similarly, having had my piece accepted into an anthology back in 2015, wasn’t what I’d expected at all. That one was creative nonfiction, but I honestly had written it in the span of like an hour or so and had been rather impulsive submitting it. I was so elated to have the piece accepted for publication.

How about you? Do people ever respond to your writing in a way that you haven’t expected?

#IWSG: Taking Risks in My Writing?

Posted on by Astrid

IWSG

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) to meet. It is April, which means it’s time for the #AtoZChallenge too. For this reason, I am writing a lot. Not that I didn’t write much in March. I wrote 29 blog posts, which I’m rather content with.

I also have been loving looking at writing prompts again. Not that I’ve dared to actually write based on them yet, at least not on the fiction/poetry ones. Okay, maybe it’s not so much that I am too scared, as I could of course be writing just for myself. Then again, I usually write with an audience in mind, so maybe I’m still scared to write even just for me. However, I also find that I take on a lot with my blogging, maybe too much. Yesterday, I was up till 11PM blogging because I had to write something for the letter E in my #AtoZChallenge series. I really hope I’ll find both the time and courage soon to write something more outside of my comfort zone.

This brings me to this month’s optional question. It is whether you’re a risk taker where it comes to your writing. This could mean tackling subjects or genres that are outside of your comfort zone, but also it could mean talking about controversial topics.

The short answer to this question is, no, not really. I used to take risks with my writing several years ago, when I still often shared my views on disability rights and autistic advocacy. Now I hardly ever cover these topics in my writing anymore.

I originally started my current blog as a way to actually take a risk by writing from the heart. I also chose my domain name to reflect the fact that my alter personalities could write too. They hardly ever do anymore.

That being said, I do put myself out there with my writing. As a personal blog writer, I am very open about myself online. Maybe that’s taking a risk in itself.

Do you take risks when writing?

Angry and Dissatisfied

Posted on by Astrid

Today, I feel flooded with emotional flashbacks that I’m not 100% sure about what triggered them or even what they are about. To give myself some insight, I picked up the book Journal Writing Prompts for Child Abuse Survivors again. Somehow, the prompts about anger appealed to me.

Growing up, I was always described as “too quick to anger”. There is some truth to this, in that I have and always had an extremely low level of distress tolerance.

My parents would react to this with resentment, but they’d generally solve my problems anyway. This at one point was described as having low expectations of me. When the psychologist who did my latest autism assessment, said that, I was triggered. After all, if my parents had expected me to be able to work stuff out myself, would that have been any better? I understand all about letting babies “cry it out” and I’m not a fan of it. I don’t have a clue whether I was left to “cry it out” a lot. I think so, as I was in the hospital for the first three months of my life and I don’t expect the nurses to have attended to each baby’s every cry. As such, even if my parents did attend to my every cry for attention, I must’ve been allowed to learn some self-regulation through “crying it out”.

My parents weren’t the most patient people in the world. At one point, my father explained to me that a family is like a business, in that it has to be run efficiently. As such, I can understand why my parents rarely let me work stuff out on my own. I also understand why they resented helping me.

Growing up though, my poor distress tolerance skills were seen as mere anger and oppositionality. I’m not sure why people perceived me as always angry. They weren’t just my parents, after all. Maybe I am quick to anger. I don’t know, but to be honest I think distress is different from anger.

When I became an adult and was admitted to the psych hospital, my nursing diagnosis at least off the record was “angry and dissatisfied”. Again, I’m pretty sure the staff confused distress with dissatisfaction. Distress is an inability to cope. Dissatisfaction is an unwillingness to accept the situation. I was perfectly willing to be discharged back into independent living if that was what was deemed necessary, but I didn’t promise I’d cope. This was considered blackmail.

Now that I’m in long-term care, my staff no longer see me as angry or dissatisfied a lot. Even so, I haven’t changed much. I still swear and scream when my computer or iPhone won’t cooperate. Staff do help me now, but they don’t resent it anymore. This has also allowed me to practise asking for help in more productive, proactive ways, which, in turn, helps me become frustrated less easily. I like it that way.