Creativity: How I Have Evolved As a Creative Over the Years #AtoZChallenge

Posted on by Astrid

Hi everyone. It’s late once again as I get to my letter C post. I don’t tend to think up my topics in advance. Same with this one. It actually popped up in my mind several minutes ago and here I am writing about my creative journey. Okay, I did my entire #AtoZChallenge of 2022 on creativity so am pretty sure I covered this topic already, but let’s do a repeat in that case.

I am not very imaginative. Like I said on Monday, I most likely have aphantasia. This combined with blindness and my other disabilities doesn’t make me all that great of an artist. And yet, I love to create!

In childhood, I’d often draw dresses and other fashion items, pretending I was a fashion designer. I lost the vision needed to draw around age 12 and, even though my drawing teacher found me paper that would create raised lines when drawing on it, I also hardly drew anything beyond stick figures in boxes from then on. Don’t ask me about their meaning – yes, I know they meant something, but for the life of me I can’t remember what.

I didn’t craft or create art again until my mid-twenties. Then I started card making. Over the next five years followed at least a dozen other crafts. And now, I’m stuck on polymer clay, although to be honest I don’t use the medium nearly as often as I used to.

Creativity can, of course, also involve the written word. I wrote stories from a young age on. I started out writing fiction and the occasional poem. Now, I almost exclusively write blog posts.

I must admit, as I think back on my creative journey, that my level of imaginativeness has probably declined over the years and I didn’t always experience aphantasia. Not that I ever had a rich inner world. Well, that is, I have and always had a strong inner monologue (or inner cacaphony, in fact) and could probably describe an inner world in words, but I couldn’t visually imagine it at all.

I think this lack of imaginativeness is the reason I write personal blog posts mostly and craft mostly realistic figures or things from tutorials. I mean, of course a unicorn isn’t real, but I almost literally copied my style of unicorns from a tutorial. Realizing this makes me feel really sad.

Bulimia (Or Something Like It): My Relationship With Food and My Body (Revisited) #AtoZChallenge

Posted on by Astrid

Hi all and welcome to my letter B post in the #AtoZChallenge. Today, I’d like to share a more personal piece and describe my history of disordered eating and body image issues. After publishing this post, I saw I did a post on this topic in 2019 too.

I first started struggling with a negative body image when I was about thirteen. I remember writing stupidly specific worries in my diary about food and my weight, such as whether the nails I’d bitten off would cause me to gain weight. All the while, I didn’t realize that I was, in fact, pretty close to overweight if not overweight already from consuming enormous quantities of candy on weekends and daily sausage rolls at the school cafeteria.

I was lucky that I never became significantly overweight until around age 25. By that time, I had developed something at least bordering on bulimia: I ate a full 500g bag of candy, sometimes more, in one ten-minute sitting at least three times a week. I also purged, although I did that after regular meals as much as after bingeing.

In the six years that followed, I gained over 20kg in weight and, by the time I was kicked out of the psych hospital to live with my spouse in 2017, I weighed 80kg. At my height of 1.53m, this is quite far in the obese range.

Yet my body image wasn’t as much of a concern to me at the time. Yes, I hated the way I looked, but at the same time I was too careless and unmotivated to change my habits. I had stopped purging for the most part by the time I moved in with my spouse, although I still occasionally did it as a form of emotion regulation.

Now, I’ve been at a healthy weight for about a year. Don’t ask me how I got here, as honestly I don’t really know. I mean, yes, I’ve been supported by a dietitian since early 2022, but honestly I can’t quite say I follow her advice. I mean, okay, I no longer binge due to my food being locked away, but I do snack on “bad” foods all the time.

My body image, honestly, is still as screwed as it always was. I still swing between underestimating and overestimating my size, between hating my body and not caring about it. I still purge occasionally, though not really out of a wish to lose weight, but more out of a need to self-regulate.

Looking back, I don’t think I ever had a genuine eating disorder. I mean, I might’ve at one point met the criteria for binge eating disorder, but I’m not so sure about that. I think my disordered eating is really more a symptom of my emotion regulation difficulties.

Aphantasia and Alexithymia #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to the #AtoZChallenge for 2024, letter A. I don’t have a theme, but I thought I’d do a repeat of what I did several years ago (I think it was in 2019), sharing posts on topics relevant to myself. I might still go off on a tangent every now and again. Awareness posts are one of my strengths and I’ve covered autism more than enough, so today I thought I’d cover two subjects I’m still relatively new to myself: aphantasia and alexithymia.

Aphantasia is also known as “mental blindness”, although it can be related to any of the senses. It’s an inability to form a mental image of something (or to imagine a sound, smell, whatever). As it turns out, most people can see relatively vivid images in their mind’s eye when they think of an object or person even when said object or person isn’t with them right then. They can also picture a scene, such as a beach scene, in their mind’s eye. I, however, can only picture objects and people very vaguely if at all, even when they’re things I used to be able to see in real life when I still had some sight.

Moreover, like I said, aphantasia can affect the other senses too. This was what made me realize I probably do in fact have aphantasia and am not just a blind person who has forgotten what it’s like to be able to see. After all, when doing a meditation practice that, for instance, tells me to imagine a beach scene, including hearing the waves crashing against the beach, seagulls making their sounds in the distance, feeling the sand between my toes, etc., I can’t. And it’s not for lack of trying. I mean, I remember once, many years ago, one of the child alters creating an inner beach by writing its description out here on the blog. I’m pretty sure that wasn’t actually effective.

Aphantasia is related to a phenomenon I did hear about several years ago, called alexithymia. This is the inability to recognize, identify and describe one’s own emotions. I remember getting a questionnaire on this at my last autism assessment in 2017, but was in denial about how significantly alexithymic I am in fact, because I, unlike the stereotype of alexithymia, don’t consider deep, emotional discussions a waste of time. In other words, I am not unwilling to describe my own feelings, but merely unable.

Neither alexithymia nor aphantasia are classified as disorders in their own right. They often co-occur with autism, which of course isn’t necessarily a disorder either but is classified as such and is, in my case, certainly disabling. Then again, so is my inability to identify my own emotions.

March 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of the month, so it’s time for my monthly reflections. As usual, I’m joining #WBOYC.

This month was really tough. I started it with second-degree burns all over my left upper leg because of a self-harm incident the night of February 29. Thankfully, the wounds have completely healed, though last Tuesday, a staff who doesn’t come here regularly and hence saw my leg for the first time since it had happened, was a bit shocked anyway.

I have now been on my lower dose of Abilify, my antipsychotic, for a full month too, since I started that on March 1. I told my support coordinator that, for now, I’d like to remain on this dose and not go down further, even though it’s definitely not an ideal dose. Honestly, right now, I’m pretty sure it’s the least ideal dose I could be on, as I’m still experiencing daytime sleepiness but also significantly increased irritability. However, I don’t want to go back to my old dosage, which was causing more sleepiness, and I fear I might become unmanageable on a lower dose. We will re-evaluate in a month. Let’s hope the increased irritability is temporary.

Like I mentioned a few times over the past month, there was this horrible compensatory system, by which every minute I’d come out of my unsupported time in distress would have to be compensated for. It has caused me intense distress and was eventually revoked. However, I’m nowhere near my old self. Then again, my “old self” was lying in bed far too much.

Today, I got more bad news: my support coordinator is leaving in mid-April. I don’t know the other support coordinator, who will temporarily be coordinating the care for both sides of the home until a new support coordinator has been found and trained, that well, but she sounds okay. I do feel relieved that I’m no longer solely dependent on my male assigned staff but have a female one too. Okay, she only works one or two days a week, but at least she’s there.

Over the past week, the only positive I can report is that I’ve been able to walk more and, as a result, close all of my activity rings on my Apple Watch each day.

I didn’t create that much out of polymer clay. Honestly, the only thing I can think of having created this past month is an orange unicorn that I didn’t even feel like photographing. I tried my hand at earrings once, but ended up incorrectly explaining to my staff how to drill the hole into them, so I threw those away.

I did cook macaroni for my fellow clients once. I also went to the day center’s tiny gym room, but that was stupid. It only had strength training equipment other than a broken stationary bike and the strength training equipment couldn’t be adjusted.

I did read a lot, mostly children’s books about unicorns. I started in the Unicorn Academy series, which I love but unfortunately isn’t on Bookshare. I’m still debating whether I want to actually buy more of the series. I also have been reading foster care memoirs.

I only posted eight blog posts (I think), including this one. I will, however, aim to participate in the #AtoZChallenge in April. I don’t have a theme, but will go with random reflections. And yes, I have a topic picked for the letter X, in case that’s going to cause me to quit yet again.

I Fear…

Posted on by Astrid

I fear not. Not really. Snakes nor spiders, heights nor depths. I fear not. Not exactly. Darkness nor monsters, flying nor driving. I fear… oh, what do I fear? Aloneness and uncertainty, pain and discomfort. And yet, I know, these are inevitable.

This post was written for Friday Writings #120, for which the prompt is to write either a prose poem, tankaprose or haibun. I chose the prose poem. I am also sharing this post with Friday Faithfuls, for which the prompt this week is “fear”.

Worries

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is about worries. What worries you about the future?

Unlike Sadje, I mostly have personal worries occupying my mind. Most of them also aren’t long-term. I mean, I do sometimes worry that the sweet and high-fat foods I consume today will lead to an untimely death ten or twenty years from now, but that worry isn’t as all-consuming as my worries about the next few weeks, months or the next year. I joke that, in 2034, everything will be okay. I got that from the book titled 2034, which I still haven’t read and is about World War III erupting that same year. I think it’s more likely that World War III is going to break out that year than that the care system will be any closer to ideal. However, in reality, I can’t look that far into the future, so I know I should care, but really I don’t.

This is probably the same reason the state of the planet doesn’t keep me up at night. That is, except when I read a news article detailing that the magical 1.5 degrees of warming have been hit in some parts of the world in 2023. Then I did worry: will the planet catch fire (not even sure whether I’m talking hyperbolically with all the wildfires we’ve had) next year?

Still, most of my worries concern my personal life. That doesn’t mean the news doesn’t effect me, but it only does when I think it relates to me personally. For instance, when I read that policy makers were talking about reintroducing 24-hour diapering for elderly people who can still use the bathroom but need assistance with it, I was intensely worried. It was said in the same article that the phrase I repeat many times over and over again when talking about my care was: “It’s better to have reasonably good care for two people than excellent care for one person.” Did they mean me? Was my care, with (at the time) nine hours of one-on-one a day, “excellent”? Apparently, because now I have just seven. But I’m still worried they mean me. After all, I still cost considerable money (far more than elderly people needing an hourly assisted bathroom break) and aren’t sedatives cheaper than one-on-one, just like diapers are cheaper than nursing assistants?

It isn’t really a clear thing I do worry about though. I mean, yes, I do worry about my care being cut, but then again, I can’t look far into the future. When I try, I’m always wrong on so many levels. So they remain mostly vague worries that keep me up at night.

Sometimes though, like recently, they’ve been more short-term, concrete things that worried me, such as over the past week the fact that my support coordinator, behavior specialist and intellectual disability physician had a meeting on Friday. The positive news is that the explicit compensatory system, by which every minute I’d come out of my unsupported time in distress had to be compensated for at my next one-on-one moment, was discontinued. Rather, from now on, staff will again discuss with me once I’m calm whether they can come back at a later time for my next support moment since they needed to spend more time on me. I am so happy I no longer have the compensatory system hanging over my head, even though some staff said the end result would be the same. I don’t care about the end result (which, by the way, will probably mean I’ll need slightly less support, honestly); I care that this makes me feel much more comfortable.

My Favorite Type of Weather

Posted on by Astrid
Daily writing prompt
What is your favorite type of weather?
View all responses

I am pretty sure I answered this question before when rambling on for one of Paula Light’s former #TGIF posts. At least, I did share that Erwin Kroll, the Netherlands’ most well-known meteorologist during the 1990s, said in an interview for the kids’ audio magazine I subscribed to at the time, that partly cloudy weather with a daytime temperature of 22°C was his favorite and I probably added that mine wouldn’t be far off. I’d prefer slightly warmer weather, but I don’t care for daytime highs in the high 20s, let alone 30s or above.

At night, I prefer a temperature below 10°C. Oh wait, I’m being a bit difficult, as with daytime highs in the 20s, you hardly ever get night-time lows below 10°C.

I used to hate rain with a passion, but now, though I don’t care for it, I will still go outside if it’s drizzling a little. I still can’t stand snow, sleet or hail.

As a side note, I had a discussion with one of my staff a few days back. He said he’d love for the daytime temperature to be 20°C now. I said me too, and we will more than likely get our way sooner rather than later given the speed of climate change, but this does mean summer highs will be in the 40s too. Be careful what you wish for…

My First Airplane Trip

Posted on by Astrid

Hi everyone. A lot is still on my mind, but today, I’d like to write a lighthearted post. Thanks to John Holton, who provides the Writer’s Workshop prompts, I now have several ideas. One is to write about my first airplane trip. Let me share.

My first airplane trip was also my first trip abroad and my first vacation without my parents. It was a trip from Schiphol (Amsterdam) airport to Moscow on August 4, 2000. I was flying Aeroflot, a relatively okay Russian airline. Still, everyone clapped when the airplane landed successfully, something I recently found out stopped in the 1970s with Western airlines.

One thing I remember quite distinctly is the horrible pain in my ears and head in general during takeoff and landing. I haven’t flown in years, but the memories came back when my spouse reminded me about it, having had a similar experience on a recent airplane trip. Honestly, I can’t imagine people actually taking pictures while the plane is taking off or coming down.

I still did have a tiny amount of vision back in 2000, so remember looking at the clouds once the aircraft had fully risen.

I also to this day remember the film playing in the airplane. Not that I could understand any part of it, as it was in Russian, but my fellow travelers explained to me that it was called something like “I want to go to prison”. The plot revolved around a Russian character who had heard that, in Dutch prisons, inmates get their own TV etc. (something that isn’t exactly true, by the way), so he wanted to flee to the Netherlands even if it meant going to prison. I bet nowadays this film wouldn’t be considered appropriate.

#WeekendCoffeeShare (March 16, 2024)

Posted on by Astrid

Hi everyone. Oh my, I don’t think I’ve ever gone this long without blogging since starting this blog, have I? I’m really struggling and today, I don’t really want to do a gratitude post, so a regular #WeekendCoffeeShare will have to do. I’ve long had my last cup of coffee for the day, since it’s 9:30PM. I’ve also had my soft drink, Dubbelfrisss. I’m afraid I’ve only got water to offer you now, but oh well. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that my burns, which I told you about in my post last week, are almost completely healed. I no longer need them dressed and just need a cream put on them to keep the skin from getting too dry. As a result, I’ve been able to walk regularly again too, meeting my movement goal on my Apple Watch each day this week except today so far.

If we were having coffee, I’d tell you that I had a really rough week this week otherwise. I’ve really been struggling with the fact that staff are to adhere strictly to my day schedule and to make up for every minute I come out of my unsupported time in distress by showing up at my next support moment later. The fact that it’s literally by the minute, wasn’t a misinterpretation, it turned out today when I talked to my support coordinator. It’s been causing me intense distress though, which has gotten me to send staff away with ther “freakin’ stopwatch”, even though when I’m in severe distress staff are supposed to stay with me (and I’m usually open to them making up for it later on when I’m calm). The compensatory system (staff having to make up for every minute of extra support minutes) only applies when I’m in distress and not when I need support during wound care or a pedicure or whatever. The reason, it turned out, is the fact that I’ve been needing more suppport lately and the staff fear my one-on-one will need to be increased, which they say they don’t mind for their own sake (assuming it gets approved) but would think is a pity for me. They seem to think, but I wasn’t to look at it that way, that my distress is attention-seeking.

Honestly, I can see their point, in that I’ve needed more support lately, but my care needs fluctuate and will probably go down again. Besides, they never write it down when I agree staff can leave at 5:15PM rather than 5:30PM to put their pizza in the oven, when I have a lie down for 30 minutes during my one-on-one or whatever, essentially cutting my one-on-one back. I don’t care about those 15-30 minutes, but staff have agreed to cut back on my support if I’m even a few minutes in distress outside of my one-on-one. And it’s not because they have other duties, because like I said if I have a 30-minute pedicure, that doesn’t get compensated for. It’s essentially to encourage “crying it out”, which has actually had the opposite effect.

Like I said, once I’ve calmed down, I’m quite open to staff having to compensate for the extra time they’ve spent with me, because I can see they need to attend to the other clients too. However, having this compensatory system hanging over me and it being strictly by the minute, causes me even more severe distress. I’ve also been ruminating over it at night, leading to night-time agitation and the night staff needing to come out to me. Wednesday night, they even had to come out to me three times. After that, I now have a PRN sleeping pill until Monday per my and my mother-in-law’s request. I only took it Thursday night. It’s a short-acting benzodiazepine, which had a slight effect when I took it. However, I honestly feel I should be able to cope without it now.

If we were having coffee, I’d share that I was two weeks on my new, decreased antipsychotic dosage yesterday and feel a lot more alert. According to my former mental health agency, the first two weeks don’t count with respect to behavior and honestly I’m noticing I’m slightly less irritable than I was until Wednesday. It might have been a night of relatively restful sleep or it might’ve been the fact that the staff who worked over the past few days weren’t stopwatch people. I certainly don’t want to go back on my old dosage.

If we were having coffee, I’d end on a positive note by telling you that my mother-in-law visited me on Tuesday. She was able to bring me the package of crafting supplies I’d ordered a few weeks ago. I ordered a few clear stamps (to be used with polymer clay in my case), a mold for polymer clay, precision paintbrushes and a couple of earring cutters.

Gratitude List (March 9, 2024) #TToT

Posted on by Astrid

Hi everyone. This past week has been tough. I was going to write an update only to realize there’s no #WeekendCoffeeShare this week. I could do one on my own, but that’d just leave room for endless negativity. Instead, for this reason, I’m going to turn things around and do a gratitude post. As usual, I’m joining Ten Things of Thankful. I’m going to cheat a little and do this gratitude list for the past ten days so that I can provide a little update anyway.

1. I’m grateful for the night nurse on duty during the night of February 29/March 1. Like I said on February 29, I was intensely triggered by my intake interview for therapy. Though I tried to calm myself down, it didn’t work and I ended up self-harming after my staff had left by throwing boiling hot water over my leg. Thanks to the night staff and particularly the night nurse, who cooled the wound under the shower for over half an hour, I am left with superficial second-degree burns. The wounds still cover most of the front side of my upper leg, but I realize things could’ve been a lot worse.

2. I am grateful my wounds are healing as well as can be expected. I’m getting them dressed once a day now, which is frustrating and sometimes very painful. I looked up my kind of burn (that’s how I found out there are two kinds of second-degree burns) and it usually heals within two weeks. Yay!

3. I am grateful for French fries on Sunday. As I couldn’t walk on Sunday (or most of this week, for that matter) because the band-aid that was on my leg would fall off if I did, I decided that my spouse shouldn’t come by for a visit. Instead, my staff took me to the institution cafeteria in a wheelchair to have fries and some snacks. They were delicious!

4. I am grateful for nice weather last week Sunday as well as over the past couple days. Last Sunday, the daytime temperature rose to 15°C. When having the fries I mentioned above, we sat in the cafeteria yard.

5. I am grateful I am feeling slightly better mentally. I definitely hit rock bottom on February 29 and from that place, you can only go up. I will have to see how things work out in the long run, as the behavior specialist is going to try to talk to the therapist I met on Feb 29 to see whether any changes to the plan need to be made. Though I’m ready to give it a try, particularly the thought of doing the therapy without the support of my staff, feels overwhelming.

6. I am grateful that my support coordinator listened to me when discussing the outcome of the monthly team meeting with me. The team meeting was on Monday and, though I had already asked that some things would be discussed, such as my day schedule, my self-harm made things a priority. The day schedule isn’t changing, as I expected, but I honestly don’t mind as much.

Initially, in the team meeting, the staff had agreed to stick with announcing staff switches half an hour in advance. I was really disappointed. Though I understand the staff don’t want to designate a one-on-one shift, I feel it will help me immensely if I know more in advance who’s going to support me for my activity slots. I am grateful my support coordinator reluctantly agreed to this.

7. I am grateful my support coordinator reassured me that she and the behavior specialist at least aren’t planning on asking for less one-on-one for me anytime soon. Of course, they aren’t the ones making those decisions, but then again neither is the therapist I met last week.

8. I am grateful I did manage a few crafty endeavors over the past week. Not as many as I’d hoped, but I did craft yet another polymer clay unicorn, as well as finally making the crocodile I’d promised one of the male staff here. He actually helped me make it. It’s maybe a little too cute, but oh well.

Polymer Clay Crocodile

9. I am grateful my spouse came by for a visit today. We sat in my room talking, playing a card game and such, as I still didn’t feel comfortable going out.

10. I am grateful for the few short (as in, fifteen minutes tops) walks I did manage over the past few days. It’s been a pain f(sometimes literally) inding the right band-aids and other things to go over the wound. Let’s hope Dr. Google is right and my wound heals within the expected timeframe of two weeks.