The Future Is Not Clear #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Exactly a month ago, I made the decision to start the process of looking for another care facility to live in long-term. I felt, at the time, that it’d take at least two years before I would’ve found a place and I was fine with that. Now, though I am still fine with the fact that it might take years before I’ve found the near-perfect place, my forever home as it were (oh boy, that sounds like the afterlife to me, haha), the path inbetween not being clear, doesn’t sit right with me.

I like to have control. I don’t like to have made my wishes clear and then not hear from the care consultant for months until he’s heard from an agency or something and they want to meet me. I don’t like the fact that a lot might’ve been discussed by those agencies with my behavior specialist or the care consultant or whatever without me knowing anything about it. That feels too vague. Besides, it feels as though I have no influence over it. Which may or may not be true.

In this sense, the fact that I’m intelligent, works both for and against me. My fellow residents, who have severe to profound intellectual disability, don’t even know anything about such big decisions. Yesterday, the least intellectually disabled of them moved rooms and he seemed to have had little say in the matter. That sounds very scary to me. I want to have a say. Yet if I can’t, and things are made clear at my level of understanding, as they were with him, then maybe it’d be easier.

Now, I do intellectually understand a concept like two years or more, but emotionally, it’s very hard to grasp. I wish the future were more tangible in this sense.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “clear”.

Sunday Ramble: Technology and the Future

Posted on by Astrid

Hi all. I’m feeling kind of off today. I’m not sure it’s all in my head or I’m suffering with the early symptoms of a mild case of COVID. I haven’t had another lateral flow test, as I don’t feel worse than I did yesterday – in fact, I feel slightly better. On Tuesday, I’ll have a PCR test, so unless I develop really telling symptoms, none of which I have so far, I’ll wait and see until then.

Anyway, for my blog post today, I’m answering E.M.’s Sunday Ramble questions. Her topic for this week is technology and the future. Here are her questions.

1. Are there any applications on your mobile device, tablets, etc. that you cannot live without? Feel free to ramble about them! Maybe we will learn new apps that will become important in our own lives.
I am going with the more unusual apps here, as I doubt I’ll be inspiring anyone else to download Facebook or a web browser (I use Edge even on my iPhone, by the way) if they haven’t already. Apps I truly love on my iPhone include the diary app Day One. I previously reviewed Diarium, another diary app, but have since gone back to using Day One mostly because it allows me to have multiple diaries.

Other apps include MyNoise, an app that allows users to select soundscapes, the task management app Microsoft To Do and Seeing AI, an app that describes images. It most recently guessed my age in a photo to be 44 though. 😒 Admittedly, I pulled a rather odd face in a forced attempt to smile. And just so you know, no, I’m not going to post the photo here. 🙂

2. Do you prefer Apple or Android?
Apple for sure! It is far more advanced with respect to accessibility for the blind.

3. Windows OS or MacOS?
Windows. I tried a Mac some years ago, thinking it’d be easy to use with my being an iPhone user already, but I couldn’t get used to it. The only advantage of MacOS is that it comes with a built-in screen reader, like iOS. For Windows, you have to buy (or get insurance to pay for) JAWS.

4. What do you wish that you would have placed in a time capsule 15+ years ago to have access to now?
I answered a similar question already on another blog a few weeks back: I’d bring back the disability-related story-sharing websites we had in the early 2000s, like Tell-Us-Your-Story.com. I also would’ve put Diaryland’s diaryrings into the time capsule, but then I’d have hacked the concept and applied it to today’s blogs. Webrings are cool! I think the concept still exists, but hardly anyone participates nowadays.

5. When you think of the what the world will look like 50 years from now, what does that future look like through your eyes? Go as sci-fi and/or fantasy as you would like and ramble on however you wish to ramble When you think of the what the world will look like 50 years from now, what does that future look like through your eyes? Go as sci-fi and/or fantasy as you would like and ramble on however you wish to ramble.
I have absolutely no idea. I did a post on this topic some six years ago on my old blog, but I mostly focused on what my life would be like when I was in my late seventies. I really hope that image description and the like will be very much improved, so that the blind will be able to “see” this way. There already are glasses, such as the Orcam or Envision Glasses, which will describe things a person is looking at. I haven’t tried those, but if they evolve more, and they likely will, I’d love to try those someday.

What do you wish you could’ve put into a time capsule to take with you from 15+ years ago?

Where I Think I’ll Be in a Year’s Time Based on My Current Daily Actions #Write28Days

Posted on by Astrid

Hi everyone. Welcome to day four in #Write28Days. Today’s optional word prompt, “nesting”, didn’t quite speak to me. I also wasn’t really inspired to write any sort of in-depth personal growth article. Rather, I picked up a collection of journaling prompts called The Self Exploration Journal and chose a prompt I hadn’t used on this blog before. It asks us to reflect on where, based on our current daily actions, we can expect to be in a year’s time.

Now I know that my future is in God’s hands, not mine. I have no way of knowing where I will be one year from now. That however doesn’t mean that I can’t take daily actions to hopefully live a healthier and more enriched life. Today, let me share some things I’m doing to take care of myself and some things in which I could still improve on and what I think these will mean for my future.

First, last month, I started on a healthier diet. It’s been a rocky road and I’m still struggling to find my balance on it. During the first week, I felt like I was just eating lettuce and carrots and was disappointed that I’d lost only 0.5kg. Now, I think I’ve found a better balance, but I might’ve swung slightly too far to the other side again. After all, this week, I had a sausage roll for lunch on Wednesday and a cheese roll today. I still am losing weight (or at least, I had a maintain this week). Based on my overall daily actions, I can expect to probably have lost a few kilograms next year, but I can’t expect to be anywhere close to a healthy BMI. Then again, that isn’t my goal.

Given that I hardly walk or exercise in other ways lately, I can’t expect my physical fitness level to improve. It’ll probably have declined by next year.

Mental health-wise, I can expect to still be in treatment and take my medication as prescribed, but I can also expect to still be quite vulnerable. Of course, I am always hoping that the next med tweak or change of treatment will be the thing that’s going to help me stabilize forever, but I have to be realistic: that’s not going to happen.

In the creative department, I can expect to experience ebbs and flows. I will probably have improved my polymer clay craft, having explored mixed media. I will likely still be a blogger, publishing several posts a week at least.

Given that, even though I look at other living places almost daily but haven’t actively decided I want to move, next year, I’ll likely still live in my current care facility. I’ll likely still be married to my husband too.

In summary, I can’t expect anything major to change for the better in the coming year but I am hopeful that I won’t make a turn for the worse either. I am hoping for slight improvements in the healthy eating and crafty departments. And, of course, I do really need to get my behind off the chair, but we’re talking current daily actions and that’s not happening right now.

What I Wanted to Be When I’d Grow Up #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “Wannabe”. I originally had no idea what to write for it, until I saw Mandi’s own post mentioned writing about what she wanted to become when growing up. Mandi chose against this theme, but I’m going with it. I can’t remember whether I ever covered this topic on this blog – I’m pretty sure I did on one of my older blogs, but it might have been here too. Even if I did cover the topic here, I have a lot of new’ish readers, so it may still be interesting.

I remember in Kindergaten we had some type of celebration that included a “fortune-teller” with a crystal ball – of course, it was another grade’s teacher. I remember she asked us all what we wanted to be when we’d grow up. Most girls wanted to be a princess, of course. I can’t remember what I said I wanted to be.

When I learned to write, however, I knew pretty soon that I wanted to be a writer. My parents, realistic as they were, told me up front that writing wouldn’t earn me a living unless I was a real good one. So for money I usually wanted to be a teacher.

I originally wanted to teach small children, of course, because I myself was still young. When I got to the later elementary grades, I made up my mind and wanted to become a high school teacher. Or a professor even. I remember proudly telling people when I was twelve that later I wanted to be a Dutch-language linguist. Later, I wanted to become a mathematician.

This was, at least, what I told others when my parents or teachers were present. Secretly, I made plans to become a psychologist. I wanted to help children or adults with my kind of problems, which I was well aware of by that age.

When I was in my later years of high school, the thought of becoming a psychologist remained at the back of my mind. Openly though, I chose to go the “safe” path and applied to become an English major. Then I made up my mind at the last moment and chose to take a gap year to go to the rehabilitation center for the blind.

I got the opportunity to study psychology, albeit not at university, in 2006. I jumped at the opportunity and did eventually earn my foundation (first-year diploma) in applied psychology. I passed communication skills only if I promised that I wouldn’t continue in this field though. I know, psychology isn’t the best major for an autistic. But I didn’t want to do something I didn’t like, so I picked linguistics as my university major with the intent of doing my minor in speech and language pathology. As most of my readers know, it didn’t work out.

I still intend on someday taking some more psychology or pedagogy classes. I will most likely never work at any paid job though. Still, my original dream of becoming a writer, has at least partly come true.

#Blogtober20

Roles I Want to Play in the Future

Posted on by Astrid

A few weeks ago, I wrote a post about the roles I play. This post was inspired by the first prompt in the journaling workbook The Year of You. The second prompt is to write about the roles you would like to play in the future. Here goes.

1. I want to be a student. I don’t mean that I want to go back to college full-time. That place has been passed and I’ll never revisit it. However, I would definitely like to study at the Open University or some other distance-learning college again. I considered signing up for the developmental psychology course at the OU for this fall. I’m not sure I’m ready though.

2. I want to be a writer. Of course, I am a blogger already and I have one piece of mine published in an anthology. However, I really want to publish more. I’m not so sure I’ll ever write my memoir as I was some years ago, but some short pieces should be doable.

3. I want to be a volunteer. I really hope to do some type of community service, ideally putting my knowledge of disability and mental health to use. For example, maybe I’ll do a recovery course again and maybe in the future even lead one.

4. I want to be an advocate. I am already with this blog, but I really want to be more of a voice for the disability community in the Netherlands.

5. I want to be a crafter. That is, I want to be able to find a hobby that I enjoy. I no longer have it as a goal that I’ll be able to do it independently.

6. I want to be a guide dog owner. I really hope to be able to get a guide dog sometime in the future. I’m not sure that is a realistic goal, but I can dream, right? I mean, ideally, I’d have a psychiatric service dog/guide dog combo. That would be awesome!

That’s it so far. Last year, I might’ve added wanting to be a homeowner, but that goal can be crossed off.

What roles would you like to play in the future?

Dear Diary: 2021

Posted on by Astrid

A ton of ideas are floating through my mind for topics I want to write about. However, I’m tempted to just do another #WDIIA post. I also realize I signed up for the #AtoZChallenge and haven’t even started drafting my posts for it yet. Ugh, that’s me being a blogger. Instead of drafting a post in advance though, I’m participating in Mindlovemisery’s Menagerie’s Sunday Writing Prompt for yesterday, for which the theme is Dear Diary. And no, this isn’t going to be a boring description of today. I hope it will be a diary entry I can write someday in 2021, when like I predicted last year, everything will be okay. Here goes.

Dear diary,

I just took a look at some old blog posts from last year. Today is September 30, 2021. My sister and brother-in-law have their fifth wedding anniversary today. Hubby and I just had our tenth on the 19th. It was wonderful! We celebrated by going out at my not-so-newly favorite restaurant, where both of us ordered unlimited piri-piri chicken. It was delicious! My husband had the following week off, so I decided to stay with him for the week. Since traveling still was discouraged last year, but isn’t this year, we took some time to vacation at a nice resort. I spent most of the time in the swimming pool. Boy, have I missed swimming!

I’ve also missed going out to dinner. Oh and ordering pizza. Though during most of the COVID-19 crisis, Domino’s still delivered pizzas, there was no-one to eat them with, since my husband couldn’t visit.

Oh, I’m so happy my husband didn’t leave me over that whole COVID-19 thing. I mean, it took several months before the no-visitors rule was lifted at my care facility. I was worried all of this time that hubby would want to have a real wife who could be with him. Apparently not. He wants me.

I’m so glad the worry is a lot less than it was last year. I’ve been working on my self-worth in therapy and getting EMDR for my childhood trauma. Thankfully, mental health resumed regular face-to-face sessions in June last year. By now, I feel better than I’ve ever before.

In 2019, I wrote on my blog that, by 2021, everything would be okay. I could not have predicted a pandemic making life much harder first. Thankfully, my husband and I survived and it’s made us and our relationship stronger.

#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.

When This Is All Over: A Letter From My Future Self

Posted on by Astrid

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

2021

Posted on by Astrid

I am struggling a lot. On Sunday, I read that long-term care funding will be available to those with a lifelong psychiatic disorder, but it won’t be till 2021. Then, I had myself convinced that I won’t get funding until then. After all, the funding person said the medical advisor may have to talk to my psychiatrist. I’m pretty sure my psychiatrist feels my primary disability is psychiatric in nature, because, well, she’s a psychiatrist. Then I will be denied long-term care funding for now.

Of course, I could be seeing the 2021 thing as a positive, in that even if I don’t qualify for long-term care now, I almost certainly will by then. I cannot see it like that though, because right now I’m virtually drowning.

I struggled a lot at day activities today. I have been struggling for a few weeks, in fact. I couldn’t find the words to express myself at first, only that I’m anxious. Then finally I was able to put some feelings into words. I fear when going into the sensory room on my own that the staff will forget me if I fall asleep. I also feel very easily overloaded by the other clients (and sometimes the staff). I just realize as I write this that staff trying to explain what is happening, sometimes overloads me even more.

I’m also afraid I will be kicked out of this day center if my challenging behavior escalates and that I’ll be left at home alone all day then. I’m not sure whether I believe the staff when they say that I won’t.

I am just so scared. I don’t know whether I can go on like this for two more years. In fact, I’m pretty certain that I can’t.

Carol