#IWSG: Inspiration to Start Writing

Posted on by Astrid

It’s not the first Wednesday of the month, but the Insecure Writer’s Support Group (#IWSG) day got set for today anyway because last Wednesday was New Year’s. I should really start to schedule these posts in advance, as right now I’m sick with the flu and not in the mood to blog. I mean, yesterday I ran a fever. Probably the days before too, but I didn’t have it checked then. Today I’m fine temperature-wise, but I still feel generally awful. I spent the entire day in bed.

This month’s optional question is what inspired you to start on your writing journey. The short answer is I don’t know. I’ve wanted to be a writer for as long as I can remember. My parents did encourage me, even though looking back I was a pretty awful fiction writer. Either they didn’t notice, which I doubt as my Mom read a lot, or they didn’t want to discourage me.

I first started writing actual stories and even what could’ve turned into books had I finished them when I was around thirteen. I don’t know what inspired me to draft those first manuscripts.

In the summer that I turned fourteen, I discovered my favorite Dutch YA author, Caja Cazemier. She was definitely an inspiration for me. A few of my stories actually contained a lot of plagiarism from her.

And then I discovered the Internet and I started writing for an audience. Well, at first I didn’t really care about an audience. My original online diary had about five readers including my parents and the site I hosted it on, didn’t have a comment function. I actually moved it to WordPress inspired by some criticism I’d gotten from my parents about it.

I’m not sure what else to say right now. I am currently very much inspired to continue writing by the people I meet online. I can’t even imagine writing without an audience in mind anymore.

2019: The Year in Review

Posted on by Astrid

Wow, can you believe 2019 is almost over yet? It was truly an eventful year. I want to do a review of the year. I originally intended on waiting till the 31st to do it, but I’m not sure I’ll have time for it then, as I’m celebrating New Year’s at my in-laws.

I had a theory when I was a teen that said life ran in cycles, by which every three years I’d find myself struggling significantly, then the next year would be one of hope, and the third year would be one of disillusionment, by the end of which I’d spiral into despair again. 2001, 2004 and 2007 were all years of despair, whereas 2002, 2005 and 2008 where years of hope. I didn’t continue to be superstitious about this past that point and honestly looking back each year was really a mixed bag. By this logic though, 2019 would have to be a year of despair. It was to begin with, but it ended on a really positive note, whereas by my teenage logic, the fall of the year of despair would be the hardest.

Well, let me say this year was extremely eventful indeed. At the end of 2018, we had just mailed out the application for long-term care funding. I started the year really hopeful by looking at a living facility and having my long-term care assessment in January. Then in February, I grew cynical. I decided everything wouldn’t be okay till 2021, as that would be the year people with lifelong psychiatric conditions would be allowed access to long-term care. I was right. My funding application got denied.

March, April and May were all largely months of waiting, as we sent out the appeal letter and my appeal was looked at. In late May, my support coordinator told me I would most likely not be granted long-term care funding this time either, but the lawyer in charge of my appeal was going to see if she could find a way to approve me anyway. She did somehow. I feel the long-term care regulations put people with multiple disabilities at a significant disadvantage. I remember writing blog posts explaining the legalities of long-term care back in like 2009 on my very first WordPress blog and I already felt the rigid care packages based on primary disability, were stupid. I don’t know how they managed to grant my appeal and even if I knew, I wouldn’t share it here.

By the time my long-term care funding was approved, my support coordinator had been informed that the care facility in Raalte with her agency had several available rooms. I started the intake process. By late August, just as I was losing hope again, I was told I would be accepted. I moved on September 23.

The past three months have been good. I feel a sense of calm, even though I still experience meltdowns. I had one tonight. Like a fellow patient on the locked unit said once, I can move around all I want, but I still need to look to myself for improving my own mental health.

When I looked at my review of 2018, I saw that my husband had been warming me up to us buying a house in his work city. I thought then that this may not happen if I go into long-term care, and indeed the house we bought isn’t in his work city. However, it’s still a house he likes. It is legally my house too, of course, which is good, in that I can move there if I ever get kicked out of long-term care. I also try to stay involved with renovation plans, but I struggle with this.

I took a look at my hopes for 2019 as I was preparing to write this review. I can be pretty satisfied with how I did on them. The only goal I didn’t meet, was to have a healthier lifestyle and lose weight. I’m doing okay on the healthier eating part, as I haven’t had binges much since coming to the care facility and make sure I don’t indulge into my every food whim. However, I don’t exercise nearly as often as I want to, though I get about as many active minutes as I did when living with my husband.

I did buy a new computer. Two, in fact, as I wasn’t happy with the Mac I bought and sold it to my mother-in-law. I am very happy with my current Windows PC though. Having a working computer again enables me to do so much more with my blog than I could when only using my phone. This helps me keep a regular blogging schedule too. Finally having found a feed reader that works in my browser, also helps. That was my only initial frustration with my current PC, as my Mac had a good feed reader and I struggled to find one for PC.

My last hope for 2019 was to stay mentally stable. I’m pretty sure I have reached this goal, as I’ve not been in serious crises at all. I’m also more than happy with how my staff handle my meltdowns or short crises as they do happen.

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.

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.

#IWSG: My Future Writing Self

Posted on by Astrid

It’s the first Wednesday of the month and that means I’m linking up with the Insecure Writer’s Support Group (#IWSG) again. I did okay in the writing department this past month. To be honest, I’ve been thinking about writing more than I actually wrote. To mention how I’d like to write more in the coming month, seems like a pointlessly repetitive statement though.

However, the optional question for this month’s #IWSG is to envision your future writing self. Let me share.

My future writing self will have finally taken a course on memoir writing. I’ve been looking at them but, since they’re usually really expensive, I don’t feel I can invest the money in them. Then again, if I ever want to be successful as a writer, it’s going to be as a memoirist. I mean, let’s face it: I can’t write poetry or fiction that’s catching at all.

I will then have written and maybe even self-published my own memoir. I don’t need to earn any money off of it, but I’d love it if other people read my story.

My future writing self will also have written more on this blog, including actually poetry and short fiction. She will not feel as self-conscious about her writing as I do now. I mean, no, my writing may not be the best when compared to other people’s, but it’s the best way I can express myself.

My future writing self will actually be able to sit and plan a story or, like I said, a memoir. She will be able to actually complete the work she starts even if it takes longer to write. In the past, I could actually write longer stories and I even have a few unfinished novels. I don’t intend on ever publishing a work of fiction except on this blog, but I do wish to have the patience to complete something that could be turned into a book. Right now, I impulsively start a ton of projects I think will be great, but drop them again within hours to days.

For example, I have been thinking of starting a prompt-based writing challenge. No, not another word-of-the-day challenge. They’re great, but there are enough of them on WordPress already. Rather, I’d like to start a journaling challenge based on prompts around self-discovery and reflection. I already registered a WordPress site for it, so in a hurry in fact that I initially accepted a missspelled subdomain suggestion. I fixed that (registered another blog with a correctly spelled address), but now I’m stuck. I don’t lack inspiration, but I have no idea how to go about actually promoting this challenge to the masses and am not even sure my idea will catch on. Then, the fact that I cannot create images to go with my posts, is holding me back, because whoever finds a short prompt that doesn’t have a catchy image with it? Maybe this idea is bad indeed, but I wanted the #IWSG community to know about it. We’ll see what 2020 will have in store for me.

How Will I Be Remembered?

Posted on by Astrid

Last week, my husband’s grandma died. The burial was on Thursday. It was okay. It however did get me thinking about how I will be rememberd and how I wish I would be remembered when I pass.

If my father’s still alive when I die, he may want to speak at my funeral. Not sure though, as he hardly speaks to me now. Then again, I guess speaking about someone is different from speaking to them. He may recall our positive experiences playing and learning together in my childhood. I will definitely remember those if I am to speak at his funeral.

He would probably have the decency not to go into my disappointing him with my adult life choices. I mean, I know I majorly disappoint him by being in long-term care, but he doesn’t voice it even now that I’m still alive. He isn’t one to talk negatively about the deceased though, I’d think. I can’t remember whether he spoke at my paternal grandpa’s funeral though and he didn’t at my grandma’s.

My mother would most likely be too self-conscious and too emotional to speak. I mean, she cried when I got married even without having to speak during the ceremony and she didn’t hold it together when speaking at my sister’s wedding. As for funerals, she spoke at my maternal grandfather’s funeral but then came running towards me for comfort. I was eight-years-old.

My sister may want to speak, if for no other reason then to fill a void. She did at my wedding (which was lovely, mind you). She spoke at my grandma’s funeral and it was amazing. I loved her sense of humor.

Ever since hearing the song, I’ve said I wanted I’m a Survivor by Reba McEntire playing at my funeral. I do. Even though it wasn’t written about an actual preemie and most of the facts about this hypothetical woman’s life don’t apply to me, the sentiment does. At least, that’s what I hope. I guess people could take its meaning two ways: either I’m the survivor who’s now an inspiration or the former preemie who wasn’t given a chance but somehow lived anyway. There’s a difference. I’m not sure how to convey it though. What I mean is, the focus can be on the negative of my not been given a chance or on the positive of my having given meaning to my life.

My husband wouldn’t want to dig up the past, I guess. He didn’t like this with his grandma’s funeral either, but then again neither did the deceased. She was a very upbeat type of person who didn’t like talking about negative aspects of the past. I guess I wouldn’t be as offended by people speaking a lot about the past when remembering me. Then again, I’d love it if my husband remembered the positives of what will hopefully still be a long life together.

Friday Flashback: Diagnonsense, Oh Diagnonsense!

Posted on by Astrid

Today I’m joining in with Fandango’s Friday Flashback and sharing a post I wrote exactly three years ago on my old blog. I let my domain registration for the blog expire this week, but it’s still available on a WordPress subdomain. With this post, I have edited out typeos and am not going to keep all the internal links. I’ll provide a link to the original at the bottom of this post.

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change due to a general medical condition instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up the next day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

https://bloggingastrid.wordpress.com/2016/11/22/diagnonsense-oh-diagnonsense/

#IWSG: Poetry on My Mind

Posted on by Astrid

It’s time for the monthly Insecure Writer’s Support Group (#IWSG) day. I originally intended on skipping it this month, because the optional question didn’t speak to me. Then I realized anything goes as long as it’s writing-related thoughts. I don’t want to be kicked off the grid either.

This month has been okay in the writing department. I have been jotting down a lot of thoughts. About two weeks ago, I joined a support group for dissociative identity disorder on Facebook and was reminded in its learning units to journal daily. I haven’t actually been doing so exactly and the private WordPress site I intended for it, has been abandoned once again. However, I did start to write more.

As I said in my other post today, poetry has been on my mind lately. I have had haikus and other syllabic poetry floating through my head, particularly at night. I’m by no means good at it, but I like to practise.

And yet I still feel insecure about my writing on this blog. I mean, I want to write poetry, but am I good enough for it? The answer may be “No,” but that doesn’t matter. I’m not submitting to a publisher or even an open competition. I’m just writing for the fun of it!

How has your writing been?

The Wait Is Over…

Posted on by Astrid

Today, V.J.’s Weekly Challenge is all about waiting. It’s an interesting topic, considering that, as I said before, it’s been twelve years this week since I embarked on my journey to finding the right care. The wait is over. On June 4, exactly five months ago today, I was granted long-term care funding. I moved into the care facility on September 23.

It was an extremely long wait. Twelve years is roughly fifteen percent of a person’s lifetime, and they covered almost my entire adult life so far. In other words, I spent most of my adult life waiting. And now it’s over.

And yet, I don’t feel the sense of relief I was sort of expecting to feel. I, after all, hadn’t put my life on hold while waiting for this magical moment. I’m glad I didn’t, as that would’ve meant I didn’t have a husband now. You see, originally, when he told me he was in love with me in January of 2008, I planned on waiting to reciprocate his love until I’d moved into supported housing. I’m glad I didn’t wait.

And yet, my life did seem on hold in other areas for all of these years. I was always in a waiting position at least on some deep, emotional level. And now I can stop waiting and start living. I hope.

Then again, can I truly let go of that paralyzing feeling of apprehension that I’ve carried with me all this time? I still feel like I’m in waiting mode. Hibernation. This long-term care placement still feels temporary to me. Then again, well, guess what, life is temporary. I’d rather get a grip on it than spend the next so many years waiting for some magical miracle that won’t ever happen to make me feel all good.

Lately, I’m constantly reminded of a comment one of my fellow patients on the locked psychiatric unit made in those early days of my hospitalization. I can change my environment all I want, but I’m still me and I need to look to change myself instead.

Tomorrow, I’ll have a review with the behavior specialist and my home and day activities staff. I already discussed with my home staff wanting to get more out of my day than I do now. I came up with the idea of taking my Braille display and external keyboard with me to day activities, so that I can do more stuff on my iPhone than simple dice games and texting. I did this today and unfortunately felt immediately overwhelmed when I tried to read a blog post while a fellow client was making noise playing with macaroni. That almost made me give up and retreat into hibernation mode again. I hope I won’t give up though.