What a Year! #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

What a year it’s been! It had a lot of ups and some really deep downs too. I will post a year in review sometime in the next few days, as I can’t do them in stream of consciousness form. However, today I already want to say that this year was huge. Really, I’m still struggling to grasp that my twelve-year-old wish to find a suitable care facility finally came true.

I’m not sure what else I can say about this year. I mean, the whole year has been filled with first applying for long-term care funding. Then it was denied and I had to keep quiet on my blog and social media about it, in case someone from the funding agency would find out and use my writing against me. I still wonder whether the funding people might’ve read that one blog post I wrote on June 3. It was essentially a suicide letter in disguise. I mean, yes, it was positively worded, as a letter from myself in 2021, when everything would be okay and I would be in supported housing. However, it was clear to anyone reading between the lines that I was in a very dark place. The next day, my appeal was granted and funding approved.

Then I had to wait for another two months to find out I was accepted into the place I wanted to go into. It was the second care facility we’d been checking out. The other one was closer to my old home (and is also closer to our current home), but the vacant bed had been filled up by the time my funding was approved. I had my doubts about that place already, as I heard at my day center that staffing was cut at the day center people from there went to. It would’ve been nice if I could live in that facility, at least in that it’s closer to our home, but it works out now too.

I had lost hope again by the day the care consultant for my current care facility called my support coordinator to inform her that I’d been accepted. No depressing blog posts this time though. This was August 20. On September 23, I moved in. Wow, that’s already been three months!

I feel calm now. Calmer than I’ve felt in a long time. Not just today, but in general. Of course, I still get frustrated when my computer doesn’t do what I want, when I don’t understand a social situation or when I need to clean up a mess I created and don’t know where to start. I still have very poor distress tolerance and that’s unlikely to change anytime soon. I still find that everyday life takes a lot of energy. However, emotionally speaking, I feel better. I don’t experience nearly the level of irritability I used to. More importantly though, my post-traumatic symptoms seem to have lessened. Yes, I’m still dissociative, but I don’t experience nearly the amount of flashbacks I’d experienced before.

For 2020, I really hope to be able to be more alert. That probably requires me decreasing my antipsychotic dose, which is a goal I have anyway. I want to experience the full range of emotions more. After all, now that I’m not overcome with emotional flashbacks that often anymore, I want to open up my mind to what life has to offer.

I’m linking up with #SoCS.

Something Between Me and God

Posted on by Astrid

So Christmas is over. My own family doesn’t care about it much. We didn’t visit my parents this year. My sister, brother-in-law and three-month-old niece saw our parents for a few days before Christmas. My husband had to work, so we didn’t have time to come over then. We could have come over today, but I personally don’t like visiting my parents if my sister and brother-in-law aren’t there too. All of us live in different corners of the country and my sister and husband both work irregular hours, so ideally we find a day when we can all be together. That doesn’t have to be at Christmas. It helps that my family aren’t religious. My parents are both atheists.

I am not an atheist, but I prefer not to subscribe to organized religion. Yes, I derive meaning from reading Christian devotionals and listening to Christian music. I also sometimes pray. I no longer attend church and never attended regularly. I take the Bible with a large bucket of salt. Yet I feel very touched by the nativity story.

Recently, when going through my Facebook profile and privacy settings, I chose to delete my religion off my profile altogether. It listed “progressive Christian” up to that point, but really I think it’s none of my 500+ friends’ business. My husband says religion is something between him and whatever higher power he believes in or not. It is not that I don’t want to share – I am doing that now -, but I don’t want to label my belief system. Maybe in some respects I’m still a seeker.

And yet, sometimes I wish I subscribed to an organized belief system. I mean, I love to connect to spiritual and religious bloggers, but it’s hard to find this connection without sharing their doctrine. Am I truly being honest when I tell a Christian blogger that I agree with their spiritual message even though on fundamental matters of doctrine, we most likely strongly disagree. I mean, my husband at one point read me the Nicene creed, on which all Christianity is based and I didn’t agree with some points.

Then again, it’s not up to the humans who wrote that creed to judge me at the end of times. They may kick me out of their blogging communities, but they won’t ultimately decide whether there’s an afterlife and if so, how I get to spend eternity in it.

I love to derive meaning from all sorts of spiritual sources. Most are either Christian or New Age-based. I don’t think believing in God and Jesus contradicts belief in one’s inner spiritual power. I don’t think I need to take the Bible literally or even semi-literally to consider myself religious. Like I said, my spirituality is something between me and God.

I’m joining in with RagTag Daily Prompt, for which the word today is Spiritual.

Monday’s Music Moves Me (December 23, 2019): My Favorite Christmas Songs

Posted on by Astrid

It’s already past 10PM Monday here and I really need to be in bed, but I really want to have a blog post up today too. Don’t ask me why, as I’ve gone days without blogging before and it’s never been a problem. I originally intended on doing another Reading Wrap-Up, but then spent so much time actually reading that I don’t think I’ve got time for one now. Instead, I’m for the first time in forever joining in with Monday’s Music Moves Me.

The theme all December is Christmas. I wonder whether next Monday people aren’t seriously tired of all the Christmas songs, as it’s nearly New Year’s then. Anyway, I’m not yet tired of them, though I must admit I rarely consciously listen to Christmas music. I remember when I had my radio preprogrammed on Sky Radio close to Christmas one year when I was around fourteen. Sky Radio is broadcasted as “the Christmas station” here around that time and it practically airs just Christmas music then. My father-in-law, who usually has Sky Radio on in his dentistry practice, changes to another station as soon as he hears the first Christmas song, usually sometime in the third week of November.

Anyway, I know quite a few Christmas songs through Sky Radio, but this station doesn’t air any of the newer ones. Or maybe it does now. I honestly haven’t been consciously listening in years. So I guess all my favorite Christmas songs are rather outdated.

My favorite one is It’s Gonna Be a Cold Cold Christmas by Dana. I somehow love her voice.

Next I guess would be Last Christmas by Wham as it’s practically the first Christmas song you’ll hear each year here. It’s a pretty bad earworm, but oh well.

Then of course I need to include a not-so-serious one and I’m obviously going with Tom Lehrer’s A Christmas Carol.

What are your favorite Christmas songs?

The Third Day of Christmas

Posted on by Astrid

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

My now spouse had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.

Essential Oil Diffuser!

Posted on by Astrid

Today we had a Christmas lunch at day activities. It was good. We got a hamburger, salad and ice cream. At the end of the day, we also got our Christmas presents from day activities. It’s a tradition here in the Netherlands that employers give their employees a Christmas package (usually a box with foods and a small gift). Though we aren’t really employees, our day activities gives us a present too. I had been more or less pestering my staff for an essential oil diffuser. A fellow resident at the care facility got one as a St. Nicholas present on December 5. I have at least one and probably two at home already, but they work with a fan and hardly give off any scent. The one my fellow resident got, works with water. You add a cup of water and a few drops of essential oil to it and then it somehow heats the water or otherwise diffuses the oil. I had had such a diffuser a few years back but that one had a lot of safety warnings on it and my husband was pretty sure I’d harm myself using it, so I returned that one to the shop.

Anyway, we did get the essential oil diffuser! It’s a cheap one from something similar to the Dollar Store, but I love it. Right now, it’s diffusing a bit of vanilla fragrance oil that I borrowed from the fellow resident, as I don’t have my EOs with me here yet. Its scent is a lot stronger than what came off the fan-based diffusers. I checked and it doesn’t seem like this diffuser is actually heating the water. Don’t know how else it produces the smell, but oh well. This particular diffuser also has lights in it that change color and it actually releases a bit of mist. I can’t see the colors, of course. I’m curious to know what this diffuser will do when I diffuse eucalyptus essential oil. I tried this in the fan-based one and hardly smelled it, even though eucalyptus is supposed to be a really strong scent. This diffuser has only a small water reservoir, so you can only add five or so drops of EO. This means I can hardly make any blends, but who cares? Maybe I’ll figure out blending tiny amounts anyway.

Reading Wrap-Up (December 16, 2019)

Posted on by Astrid

I am not primarily a book blogger, like I’ve said more than once. However, I do love reading and at any given time have a huge pile of books I still want to read. I have always loved sharing my love of reading, even though I don’t move fast. I mean, I usually take several weeks to complete a book. This may be due to the fact that I usually read more than one book at once.

I enjoy participating in book-related memes. I love to discover new books to add to my TBR pile and I’m sometimes even surprised at how many I know, given that like I said I’m a slow reader and don’t devote the majority of my time to books. Today, I’m joining in with a few book-related memes.

First, I discovered Stacking The Shelves just today. This is an awesome meme that lets you share what books you’ve added to your collection, whether digital or physical. It doesn’t require that you actually read them. Then, I’m joining in with It’s Monday! What Are You Reading? (#IMWAYR). I joined in with that linky last August intending to make my recent reads a monthly feature. I’m not promising I will this time. There’s a kidlit version of #IMWAYR too, but I can’t seem to link up there, so I’m just sharing my kidlit stuff here too. Finally, I’m joining in with the Sunday Post.

Life Update

This past week was hectic. I was triggered during most of it due to the phone conversation with my mother last Monday. I didn’t even share the most upsetting parts of it on my blog. Then over the week-end, my husband and I had several miscommunications, which led to the week-end being less enjoyable than it could’ve been. Then this morning, I had a brief but bad meltdown at day activities. I guess it’s time to retreat into books.

What I’ve Been Reading

Like I said, I tend to read several books at once. This past week, I finally moved past the first chapter in Left Neglected by Lisa Genova. I still think it’s a pretty boring read so far. Hoping it’ll get more interesting as I move along.

I added Pictures of Me by Marilee Haynes to my Bookshare collection a few weeks ago. This Christian middle grade novel has been on my to-be-read list forever and I finally started reading it last week. So far, its Christian focus doesn’t seem to be overdone and I like it.

Stacking the Shelves

Books I’ve added to my collection recently include:


  • Everyday Healing with Essential Oils by Jimm Harrison. I know, this one isn’t interesting for fiction lovers and I doubt I’ll even ever read it in full. I like it as my little reference guide though for when (if?) I’m going to create my own aromatherapy blends.
  • More Happy Than Not by Adam Silvera. I don’t know whether I’ll like the dystopian aspect to this one, but it’s also intriguing at the same time.

  • My Heart and Other Black Holes by Jasmine Warga. This sounds like a truly fascinating story.

  • A Baby’s Cry by Cathy Glass. I still haven’t asked my husband if I can use his credit card details for my Amazon account. I was planning on it this week-end, but due to said communication mishaps, I didn’t. I instead bought the book on Apple Books.

What have you been reading lately?

A Phone Conversation with My Mother

Posted on by Astrid

Last Monday, my mother called me. She rarely if ever used to call me when I still lived with my husband, but now she’s been the first to attempt contact a few times already. I don’t know whether I need to feel bad about not contacting her first, as conversations usually get uncomfortable for both of us.

Like, on Monday, I had just been in an angry outburst when she called. I couldn’t avoid telling her, as I needed a few minutes to regroup. That caused the conversation to center on my (perceivped by either of us) problems and my mother’s attempt to solve them. She was offering me all kinds of advice. If I just stop panicking at frustrating situations or learn to cope with unexpected change, I’ll be able to live with my husband again. I never even said I want to leave the care facility. Of course though, I’m supposed to have this as my ultimate goal anyway. Who, after all, would choose to live in care if they didn’t absolutely need to?

I was terribly triggered by my mother’s unwanted advice. When processing this conversation with my husband yesterday though, I was reminded of her perspective.

You know, I was born prematurely. My mother already feels guilty about that to some extent, as if she was the one kicking me out of her womb. Well, obviously she wasn’t.

Then in our discussion, I disclosed to my husband that I was most likely exposed to valproic acid, an anticonvulsant, in utero. My mother isn’t certain of it, as she took different anticonvulsants for her epilepsy over the years. However, all valproates and most other anticonvulsants have some risk of affecting the fetus when taken by pregnant women. The realization that this might’ve contributed to my developmental disabilities, didn’t happen right away even though in the 1980s, valproates carried warning labels already. It probably came when I was last assessed for autism in 2017 and my mother was asked whether she took any substances or medications during pregnancy. At around the same time or shortly before, there was an article in the newspaper my parents read about large numbers of French women being given valproic acid during pregnancy as late as 2014. This lead to over 4000 children having serious birth defects and even more having developmental disorders. Up to 40% of children exposed to valproates in utero are autistic.

My husband expressed that this may be a factor in my mother’s trying to deny the significance of my autism. After all, if she did something to contribute to me being disabled, she’d have to deal with immense guilt if admitting its full significance. Then it is more understandable that she’s in some denial. It may also explain, I now realize, why she’s trying to “fix” me. I told her she doesn’t need to, but she remains my Mom.

For clarity’s sake, a pregnant woman getting a seizure may be harmful to both mother and child and my mother said this risk was fairly high in her case if she didn’t take meds. I don’t know, as my mother has been seizure-free for 30+ years and off meds for as long as I can remember. However, I mean this to undo the blame. The doctors did what they thought was best, at least that’s what I assume. My mother and I have some questions here too, as my mother also took part in a trial of aspirin to prevent premature birth, which obviously didn’t work. My mother at least did what she thought was best. She never intended to have me early or cause me fetal anticonvulsant syndrome. More importantly though, there’s no need to fix me. I’m content the way things are right now.

Writer’s Workshop: Collections

Posted on by Astrid

This week, one of the Writer’s Workshop prompts over at Mama’s Losin’ It is about things you collect. It definitely appealed to me, as at least as a child an teen, I used to collect a lot. Now I seem to collect things you can use and that I actually intended to use when buying them, but then I end up rarely using them. Does that count as collecting?

As a child, I, like most other children, had a large collection of stuffed animals. I also had a lot of Barbie dolls and such. In particular though, I had lots of PlayMobil® figures and stuff for them. When I was about eleven, I was even gifted a large box of PlayMobil® by someone on a garage sale. I had previously visited the garage sale and bought some of his stuff and by this time he probably wanted to get rid of it all so bad. That plus seeing how much I enjoyed it and came back each time to buy more stuff, probably convinced him to give it all to me. I however did play with it a lot until I was about fourteen. I particularly remember the games I played with some Native American-looking PlayMobil® figures whom I called Ingassa and Maranna. I had no idea at the time what were real Native American names (still don’t to be honest). I would always say these figures came from Costa Rica.

Later, I collected gemstones and crystals. I had some interest in their presumed healing properties, but mostly just liked looking at the colors and feeling their shapes. I had a lot of quartz crystals, including amethyst, rose quartz and citrine. I also loved calcites and had both the green and honey-colored ones. I at age twelve did a large research project on mineralogy. I however had no idea one of my stones was a form of asbestos. When I found out what it was while living on my own in 2007, I almost landed in crisis thinking I or one of my parents would develop cancer from it.

By the time I came to college age, I didn’t really collect anything anymore. I don’t even know where my crystals are, even though I know I had them at my student apartment. I can’t see the colors now anyway, although I at least used to have a file in which I wrote which one was which so may be able to experience some joy from them anyway.

When I was about 25 though, I developed an interest in crafting and started buying craft supplies. For some stupid reason, I started with card making, which is a pretty inaccessible craft for someone who is totally blind. I probably spent over €1000 on supplies before finally giving it up. Then came jewelry-making, polymer clay, rainbow loom and some others, all hard for someone with my disabilities. I finally settled on melt and pour soap making, although I haven’t done this since coming to the care facility. The good part is though, even if my soaps don’t turn out aesthetically well, I can still use them, so I don’t just collect soap stuff for the sake of it.

More recently, I started collecting all kinds of scented stuff. I have a large collection of essential oils at my husband’s and my home. I also have wax melts and of course the fragrance oils I use for soap making. I love those. Still, my diffuser is probably still packed from the move. I need to ask my husband where it is, so I can bring it to the facility.

When I collect something, I’m usually more interested in researching the stuff I collect than actually using it. I loved learning about lotion making when I first started soap making, but I rarely actually made any lotions. I also have a ton of books on aromatherapy (most thankfully free or through my Bookshare subscription), but rarely make any blends. Of course, the reason is partly that I cannot tell how many drops of a particular oil I put into the blend. I would love to ask my staff for some help with this, so that I can make diffuser blends or even massage oils. But first, I need to find my oils and my diffuser, as I don’t want this to end like my card making obsession, where I spend another €1000 (that this time I don’t have) before realizing this isn’t for me.

Mama’s Losin’ It

Oh, Christmas Tree!

Posted on by Astrid

Today, the staff at day activities have been setting up the Christmas tree and other decorations. I know some people in other countries do so much earlier, but St. Nicholas is celebrated on December 5 here and it’s pretty much not done to set up your Christmas tree before then.

I have a book of Christmassy journal prompts. They start on December 1, but I haven’t written on any of them yet. Today, I’m choosing to write on the Dec 2 prompt, which is about Christmas trees.

Growing up, my family had a Christmas tree almost every year. The one or two times we didn’t, it was because of our cat. We had a live tree and our parents pretty much detested faux trees. We had the tree decorated with silver and red Christmass balls and bells that were made of glass. Almost each year, I would accidentally break at least one ball or bell. We also had a ton of wooden figurines including santas, snowmen, angels, etc. I particularly loved to play with these figurines. We had yellow Christmas lights on the tree. I’m not even sure other colors were available back then. We didn’t have a star or other large decoration at the top of the tree.

When I moved out of my parents’ house, I didn’t particularly care for decor. After all, I was totally blind by this time. No Christmas tree for me.

In the psychiatric hospital, we did have a lot of Christmas decorations. Yes, even on the locked ward. Of course, they had to be safe, so they couldn’t be made of glass or in any other way used to cause harm. I was admitted in early November and, by the time the decorations got put up, was still pretty unstable. One day, in an anger outburst, I pulled all Christmas decorations off the wall.

I still don’t really care for Christmas decorations, though I don’t really dislike them either unless they’re in my way. It is very intriguing to know how much people can put in my way in the name of decorating. At my last psych unit, I was in crisis almost every December due to having bumped into one tree or another (we had several) a little too many times.

This year, I know my staff will make sure to place the Christmas tree somewhere I won’t bump into it. Both at day activities and at the home, I’m not the only autistic or blind person. My staff asked me whether I want to make a Christmas decoration with one of them next week. I said yes.

Key #SoCS

Posted on by Astrid

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.