How My Personality Has Evolved Over the Years

Posted on by Astrid

Hi everyone. Today, in her Sunday Poser, Sadje asks us how we’ve changed, personality-wise, as we’ve grown up.

The first way in which I’m far different from what I was like as a teen, is my self-expression. I am much, much more open about myself and my inner world than I was when I was younger.

Oh wait, I need to nuance that statement slightly. There, after all, was a time in my late teens and early to mid twenties, during which I was more open about myself than I am now. On my first blog, which I started as a diary in 2002 and moved to WP in 2007, I probably showed a little (a lot) more of myself than would be considered normal. Also, no-one probably remembers that I had my current blog URL for a few months in 2011 too, but I do. I particularly remember with a sense of shame a post one of my alters wrote just after I got married saying my spouse probably doesn’t even love me. Well, now nearly fourteen years on I’m convinced that my spouse does love me, but even if I didn’t think so, a public blog wouldn’t be the place where I’d spill my guts.

I do believe that, even though I was extremely private as a teen, the willingness to share my thoughts was always there. I just didn’t trust my audience at the time, ie. my parents and teachers. Now trusting the whole world isn’t necessarily safer, which is why I’m no longer as candid as I was even seven years ago when I started this blog.

Another way in which I’ve changed, which might be related to the above, is that I’m generally more outspoken and assertive than I was as a teen. I still oscillate between passive and aggressive a lot in daily interactions, but where it comes to major life decisions, I’m not as dependent on the approval of others as I was.

Lastly, I’ve probably become less judgmental than I was in my teens. I’ve also become less arrogant. I mean, back then I looked down on people with intellectual disability or those who were less educated than I was in general. It did take me having to rely on the care system myself in order to change that.

As a result of being less judgmental towards others, I have also become less hard on myself. That doesn’t mean that the voice telling me I should be able to live fully independently, isn’t there anymore. I am however able to channel that voice into prioritizing my need for self-determination.

The Wednesday Hodgepodge (January 10, 2024)

Posted on by Astrid

Hi everyone. Sorry for not having touched the blog in a few days. I really mean to blog more this year, but have been struggling a bit lately again so no inspiration. Today it’s time for the Wednesday Hodgepodge though, so this post should come relatively easily. Here goes.

1. What’s a change you’d like or need to make this year?
I’d like to taper at least one of my medications.

2. Break the ice, on thin ice, ice skating, tip of the iceberg, ice cold…which icy idiom applies to your life right now? Explain.
Ice cold. It’s been freezing for a couple of days now. It’s a dry frost though, so no need for people to remove ice from their cars. In the early mornings, the temperature dropped to -7°C with a real feel of -15°C.

3. What’s a project you’ve been putting off? Will you get to it this month? This year?
Decorate my room. I’m not sure I’ll get to it this month, but definitely this year.

4. Of the fruits that grow well in winter which ones have you tried? Which is your favorite?

pomegranates, clementines, persimmons, passion fruit, pears, grapefruit, lemons, pomelos, kumquats
I have tried about half of this list: pomegranates, pears, grapefruits, clementines, lemons and that’s it I think. I don’t really care for any of them, but if I have to choose one, I’ll go for clementines.

5. What do you think it means to be courageous?
I don’t really know. I think it includes standing up for oneself and others in the face of persecution. Then again, it could also include standing up for what’s right, but what’s “right” depends on your viewpoint. Like, I’m pretty sure half the Hodgepodge’ers wouldn’t feel included in my “all-inclusive” society because their values do not align with my purpose of inclusion. In this sense, courage is really not unrelated to one’s political or religious affiliation and whether someone is a hero or an idiot depends on whether you agree with them or not.

6. Insert your own random thought here.
On Saturday, my spouse will be visiting me after picking up the new car we’re getting. I can’t wait to sit in our “freezer Fiat”, as we’ve been jokingly calling it. We call our current car the “heat-up Micra”, as it has no air conditioning and is black and our previous car had broken heating so was ice cold in winter. The “freezer Fiat” will, thankfully, come with air conditioning.

Colors, Changes and Connections

Posted on by Astrid

Today, I am joining Denyse’s #WWandPics link-up. Denyse apparently has been sharing posts following an alphabetical theme. Today, she talks about the letter C. I could do this alphabet thing too, but then I’d have to start at A. Instead, I’m taking inspiration from her “C” words to write my post.

Denyse’s first “C” word is “change”. Of course, things are changing in my world too, though I’m not yet sure when. I got informed last Saturday that my new care home will keep my current day schedule for now. That’s in spite of the fact that it apparently indeed does cover two hours more care a day than I get funding for. I still don’t fully understand the technicalities, but I don’t really care, as the number of support hours I get according to my day schedule was never the problem. It was how cut up into at most 60-minute activity blocks it is. It’s okay though. Better than the alternative my staff have been suggesting, saying I need to find a way to cut back on those two hours and go down to 30-minute activity blocks.

I asked my support coordinator about having a care plan review. We haven’t had one in nearly two years due to my moving to my current home right when my last review was due. My support coordinator is going to get the new one to schedule a review once I’m settled there and he will attend too.

He also finally sent my mother-in-law an activation code to access the daily reports on me and my care plan. As far as my mother-in-law is concerned, they mostly report really superficially. For those who are wondering, back several years ago it was agreed upon that I wouldn’t get access because it might cause distress, but I did want someone in my family to have access especially now that I’m struggling significantly. Most daily reports apparently go something along the lines of “mostly had a good day, slightly stressed over ___”. I don’t know whether it’s deliberate, but that’s certainly downplaying my distress.

The support coordinator for the new home did ask my current support coordinator to confirm what color paint I want on my wall, despite the fact that I’m pretty sure I already told him through my mother-in-law. It will be pink, since lilac wasn’t available. Truthfully, all other colors except maybe blue sounded awfully ugly to me. And yes, despite being blind, I do have some concept of color from when I could still see a little.

Through all this change, I am happy about my online connections. I have multiple disabilities, so am in Facebook groups for various conditions. I am also in a few Facebook groups for former preemies or NICU babies in general. The Dutch one is organizing a get-together in September. I sent the organizer an E-mail to sign up, then decided to ask some further questions in the Facebook group. As far as I’m aware, the get-together will be held in a café-style meeting room, so I’ll most likely be able to get the ParaTransit taxi driver to get me right to where I need to be. On the one hand, I’m reminding myself that I used to attend the DID charity meetups independently each month from 2011 till 2013 and even rode the train there by myself. On the other hand, it’s 2023, not 2013 and I’ve probably declined cognitively at least a little. Then again, if I don’t try, I’ll never know if I can do this. I would really love to connect to other NICU survivors, as honestly I’m beginning to realize I might not be alone in experiencing significant attachment issues and they might in fact have started this early on.

The Wednesday HodgePodge (September 7, 2022)

Posted on by Astrid

Hi everyone. It’s Wednesday again, so it’s time for the Wednesday HodgePodge. Here are Joyce’s questions and my answers.

1. Tell us a little bit about the best birthday you’ve ever had.
I honestly can’t decide on any specific one. Birthdays were always stressful when I was a child, but they’ve gotten easier as I got older. Now that I think of it, I’m going to pick last year’s, my 35th, because it wasn’t as loaded as the ones before and I got some of the loveliest presents.

2. In what way(s) have you changed in the last five years?
Five years ago, I was struggling greatly living with my husband. I had already had my first major mental crisis, but not my second or third and I was still trying to uphold the image of myself as the successful psych survivor. As such, the most important way in which I’ve changed over the past five years, is having learned to embrace myself with all my limitations, rather than wanting to prove my capabilities to the world. It’s a delicate balancing act and sometimes I wonder if I’ve swung too far to the dependent side of things. I’m trying to reclaim some of my fierce self-reliance indeed, without losing the self-determination I didn’t have five years ago. For those who don’t know, living with my husband rather than in a care facility wasn’t my choice; instead, I had been kicked out of a psych hospital in May of 2017 for allegedly misusing care. I am so glad my community support team and I eventually came to the conclusion that I needed to be in long-term care after all. Now I need to find the balance between passive dependency and stubborn self-reliance.

3. What’s your favorite thing about the street on which you live?
The fact that the care facility is right at the end of the street, overseeing the meadow, so it’s relatively quiet.

4. The Hodgepodge lands on National Beer Day…are you a beer drinker? What’s a recipe you make that lists beer as one of the ingredients? If not beer, how about yeast?
I can’t stand beer, doesn’t matter whether it’s alcohol in it. I honestly don’t know any recipe with beer or yeast in it. That being said, my father used to make bread from scratch, including “waking” the yeast for the dough. That expression always made me laugh.

5. As I grow older I would like to be a woman (or man, if there are any men in the HP today) who…
Practises expressing gratitude everyday.

6. Insert your own random thought here.
Speaking of my answer to #2, I had an interesting conversation with the student staff today. I have as soon as I came here expressed that I’d prefer not to be helped with my personal care by male staff. When discussing this with this student staff a few days ago, I said that I could try to do my personal care myself if there’s no female staff available. This staff either understood this to mean that, if he works on my side of the home, I’ll do my personal care by myself, or I thought he understood it this way. Rather, I had meant it if no female staff are available at all.

It may seem weird that, if I can do my personal care by myself if absolutely necessary, I may want help with it sometimes or most times. The reason has to do with the fact that doing my personal care costs me a lot of energy without giving me much satisfaction at all. I don’t personally feel that self-reliance is an end goal in itself, so I get help with my personal care. Thankfully, my staff agree. Then again, I can’t expect there to always be a female staff in the home, so when there isn’t, I make the choice to invest the extra energy into my personal care in order to preserve my dignity as a married woman.

Dream Small

Posted on by Astrid

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

I Can Rest in Jesus

Posted on by Astrid

A few weeks ago, like I’ve mentioned before, my husband pointed out that I cannot and should not do life alone. I at once cannot and do not need to rely on myself alone to solve the puzzle that is life here on Earth. I have God to help me.

That same day, John 15:5 was the verse of the day on the Bible app I use. It has been on my mind ever since and could easily be one of my favorite verses so far. Oh yes, I know the Bible wasn’t originally written in chapters or verses and the wider context is important too. I will get to that.

“I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.” (John 15:5 ESV)

This is good news! My husband was initially worried that I would be disappointed by the rest of this chapter, because, well, it is good news only to those who will listen. This verse, to me, however, captures both the positive and the negative message that the wider context of the chapter reveals: Jesus is the vine, while we are the branches. If we abide in him, we will prosper; if we don’t, we will perish.

Today, as I was thinking of what to write for my blog, I opened Bobby Schuller’s book You Are Beloved and saw him discuss this exact chapter. Schuller says that, in Greek, the word that is translated as “abide” in English, is “meno”. There is no literal translation for this word in either Dutch or English (the Dutch Bible translation I use says “remain in”). Meno, according to Schuller, means something like coming home to a warm place after having been in the cold for a long while. We can come home to Jesus.

I loved the imagery Schuller evoked. As regular readers of this blog might know, I have never felt that I was truly “home” anywhere. No, not even in my current care facility. I didn’t feel very safe with my parents and, after I moved out, have been in so many places that were all temporary. Now that I can stay here, still, I struggle to believe it. Regardless though, in Jesus, I can rest and be home.

Schuller also makes it very clear that we can only truly love one another if we know God’s love for us. Through Jesus, we are loved in all our sinfulness. If we realize that God loves us, imperfections and all, we are able to extend this love to other people.

In my experience, this isn’t even a fully conscious choice. God’s grace extends to us, and due to that we are able to extend our grace and love to others. I am reminded, as I often am lately, of my music teacher’s telling me and my fellow students about a show on Dutch TV at the time called “God changes people”. Because the first several syllables of this phrase are the same as those in a Dutch swear word involving God, I was tempted to start cussing with God and then change my wording mid-sentence to “God changes people!” I still use God’s name in vain at times, but each time now, I am reminded of this. I credit God’s work in me for that.

I am linking up with Faith on Fire and Grace and Truth.

Sunday Poser: Changes for 2021

Posted on by Astrid

Today’s post is going to be a relatively quick one. I hardly slept at all last night and really need to rest, but I’d also like to write something to wind down for the night. I’m joining Sadje’s Sunday Poser. The question is about the changes you wish to see in 2021. I traditionally write a post of personal hopes for the new year in early January, so I won’t make this too personal.

Like Sadje, I agree that I totally wish this COVID-19 crisis will end. I really hope the vaccine will be distributed fast. I’ve already heard that the staff of care facilities may get the vaccine in late January here. That being said, I doubt things will move as quickly as it looks now, because we have a rather slow-thinking health minister.

We’re due to have a national election here in the Netherlands in March. I really hope the right won’t win more seats in the Lower House than they have now, but I must say I don’t hope for a huge move to the left either. In this sense, I don’t hope much will change, although my leftist conscience does tell me I need to object to Mark Rutte getting yet another term as prime minister. My centrist intellect says he isn’t so bad after all.

Honestly, of course, I do think a lot needs to change on a larger scale. We need to truly show our stewardship towards the planet and we need to distribute wealth and health more evenly. That does make me worried for my own sake though, as I know I’m relatively healthy and wealthy considering the world at large. I shouldn’t be so selfish though.

Lastly, like Sadje, I definitely hope people become less divisive and extremist in their encounters with others. If COVID taught the world one thing, it should’ve been that it can affect us all.

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

Eight Ways in Which My Reading Life Has Changed Over the Years

Posted on by Astrid

This week’s Top Ten Tuesday, hosted by That Artsy Reader Girl, is all about ways you have changed, particularly as a reader, over the years. I am not a book blogger, since posts about books make up not even ten percent of my total posts. I don’t read nearly enough to be a book blogger. This may be one reason I haven’t participated in #TTT for a while. However, I loved this week’s theme. Here are some ways in which my reading life has changed over the years.

1. I read because I want to, not because I have to. As a child and teen, I didn’t like reading much. Especially not the assigned literature we were supposed to read for school. For this reason, in my young adult life, I didn’t read much at all. Over the years though, I discovered a love of reading and now read for pleasure. Sometimes I still feel like I have to finish a book, but then it’s me creating the pressure.

2. I read almost exclusively English-language books. The book famine, ie. the lack of accessible books to people who are blind or otherwise print disabled, is still pretty severe in Dutch-language literature. In English, almost every book I want to read is available in an accessible format nowadays. This is one reason I enjoy reading books in English far more than in Dutch.

Another is the fact that I blog in English and, to be honest, I don’t do much in life (except for peeing and sleeping and eating) without some motivation related to my blog. I love to venture out into the bookish blogosphere at times.

3. The way in which I read, has changed. As a child, I almost exclusively read audiobooks. Oh and the occasional large print book suited for children much younger than me, because with how poor my vision was, ordinary large print was too small for me. I hated reading Braille, so unless I was forced to, I didn’t touch a Braille book.

Now I read almost exclusively by touch. I recently bought a few audiobooks, but to be honest am quite a bit disappointed in the narrators.

4. I discovered eBooks. As a teen, I read books my parents scanned for me. Then I didn’t read much at all as a young adult. In 2013, I found out that Adobe Digital Editions, the main program at the time to read EPUB eBooks, had been made compatible with screen readers. I read EPUB from then on, although I no longer use Adobe Digital Editions. I use the iPhone’s book app instead.

5. I joined Bookshare. Bookshare is the U.S.-based online book service for the print disabled. In 2005 and 2006, when I first started reading English-language books for pleasure, I was a member of the UK’s National Library for the Blind. I for a short while read physical Braille books then. That didn’t work out due to shipping issues. Bookshare, though it existed back then, wasn’t available to international customers at the time. It became available to those outside of the U.S. sometime around 2015. I joined Bookshare in mid-2016.

6. I found out about Kindle. That’s another eBook format that didn’t use to be very accessible. Back in like 2015, there was the accessibility add-on to Kindle software, which would read the content of the book aloud. Like I said, I’m not a fan of audiobooks and I’m certainly not a fan of the robotic-sounding voice of the Kindle accessibility add-on. Sometime in 2018, I found out that the Kindle app for iPhone, and to a lesser degree Kindle for PC, now support screenreaders and most importantly Braille displays. I still don’t buy Kindle books very often, as Bookshare has a wide selection of books too, but I know that if I really want to read a book, I can.

7. A larger percentage of the books I read is fiction. Roughly ten years ago, I only read a bit of teen fiction and mostly read biographies and other nonfiction. Now about half of the books I read and the majority of the books I finish are fiction.

8. I read a wider variety of books. Though most of the fiction I read still belongs in the young adult category, over the past few years I’ve ventured out into other genres as well. I love reading a diverse selection of books now.

How has your reading life changed over the years?