Category Archives: Musings

A Time I Ignored My Intuition: Moving Institutions

I haven’t written at all this past week. It was an eventful week, but I feel reluctant to disclose details. I have also been feeling uninspired to write about anything that isn’t just a diary-style entry starting with the phrase “Today I did…”. Well, that’s not what feels right to me.

I was talking to my assigned day activities staff this afternoon. We were casually discussing places I’d lived in before and I mentioned having moved from one institution to another to be closer to my husband in 2013. That was a big mistake.

The memory came back again when I read a journaling prompt in one of my many collections of prompts. It asked me to reflect on a time I had ignored my gut feeling or intuition. This was a time I did. Let me share.

In late 2012, my husband and I had accepted a rental home in a town near Arnhem, Netherlands. I was at the time living in an institution in Nijmegen, about 30km away. There was a lot of turmoil going on about the unit I resided on. For example, there was talk of us moving to another building. We’d just moved from an old building to a newly-built one in September of 2012 and I didn’t like yet another move. Unless it was closer to my husband. So even when the plan for yet another move was canceled sometime in April or May of 2013, I still said I wanted to move to the other institution, which was in the town next to the town in which we’d rented our home.

I had an intake interview in June of 2013. The psychologist was quite mental if you ask me. I’d come from a unit with 24-hour care and he was expecting me to move into a house with a few other patients and staff dropping in once or twice a day. Well, no way! He said that’d be better preparation for my moving in with my husband than going to another unit with 24-hour care and the in-between unit was full. He gave me the choice though, but I had to be quick. It was Thursday and I was expected to move before the week-end, because if I waited till Monday, the bed on the 24-hour care unit may have been filled already.

I felt rather off, but I reasoned my feelings away. I wanted to be closer to my husband, after all, and I wanted to ultimately live with him. Or so I thought. So I moved the next day.

Let me explain that my staff at the ward in Nijmegen had been as supportive as psychiatric care staff can be. I mean, they were sure I needed a lot of support at least. They had denied me the opportunity to go into a housing unit for people with visual and intellectual impairments in 2011, but it takes a lot for a psychiatric professional to go beyond their expertise and see that a person might be best served in developmental disability services even if they have a high IQ.

The staff in the new institution were not so supportive. Even though they allowed me to stay there for nearly four years eventually, they were adamant that I go live with my husband and eventually kicked me out with almost no after care, reasoning that I had refused to go into any home with more care they’d offered. Which, frankly, was none.

Now, nearly two years into living with my husband, I”m facing the pain. I’m still feeling angry towards the staff at the last institution and regret that I decided to move. From now on, I’ll twust my gut feeling when something doesn’t sit right with me.

#IWSG: Finding My Voice

Today, it is once again time to share our thoughts with the Insecure Writer’s Support Group (#IWSG). The optional question assigned for this month is to write about from whose perspective you like to write best. Since I rarely write fiction nowadays, my answer is simple: my own.

I didn’t do much blogging in the past month. Part of the reason is the need to remain silent about some recent occurrences in my life. This means some diary-style writing is out of the question right now. Unless, that is, I do it offline.

Which brings me to the fact that I rediscovered Dyrii, an app on my iPhone and now on my Mac too, which you can use for keeping a journal. It still needs a little getting used to on my part, but overall, I like it. It helps me find my voice again, even if it isn’t in public.

I seem to have been able to write some more again in the past week. It feels good. I always feel good when I write.

I am also seriously thinking of starting up my fiction writing again, even though I am told that it generally lacks imaginativeness. I will see if tomorrow, which is my day off from day activities, I can write some fictional piece again.

In other news, I got myself the Dictionary.com app on my iPhone. I am loving looking up new words and idioms. As you might know, English is my second language and half the words that I come across in word-of-the-day challenges, I do not know the meaning of. I’m told this isn’t so unusual and that I’d benefit more from learning idioms rather than vocabulary. I don’t care. It’s cool to learn either way.

#IWSG: Creative Outlets Besides Writing

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Determined

I want to write so bad, but my shoulder is still hurting. Not as badly as it was, but there’s some kind of bulge on it that keeps acting up whenever I lift my arm up even slightly, as I do for typing. I am determined to beat this stupid thing though.

Determined. That’s Fandango’s word for FOWC today. I rarely participate in these one-word challenges, although I’m subscribed to most blogs that offer them, including Fandango’s. However, today’s word struck a chord.

I told my named support worker at day activities about my crisis of 2007. I realize I’ve never shared my life story on here yet, so some readers will not know what I’m talking about. Let me explain. In 2007, I was living independently and going to university. I had been forced to go that route after essentially being kicked out of an independence training home that I had attended because I’m blind. I had been diagnosed with autism just a few months prior. Neither autism nor blindness alone should keep someone from living independently and going to university, but the combination did cause me a lot of trouble. Within three months, I was in a suicidal crisis. I had to be admitted to the psych ward. Not because I wanted to per se, but because that was what I needed at that point.

Fast forward 9 1/2 years and I was kicked out of the psych unit again. Yes, I stayed in a psychiatric hospital for 9 1/2 years. Not because I wanted to, but because no other place wanted me. Those for people with just autism, couldn’t deal with my blindness and vice versa. There are places for people who are blind with multiple disabilities, but most of the clients going there have some type of intellectual disability. That was obviously not where I belong. Or was it?

I’ve now been living independently with my husband since May of 2017. Despite lots of support, it’s a struggle. I am surviving, but I’m barely living.

So I decided to apply for long-term care. Which had originally been determined to be best for me by the psychiatrist who admitted me to hospital in 2007. I am determineed that, if we stop looking at just my labels and start looking at me, we’ll find someplace for me.

Then again, is this determination? Am I not essentially underachieving if I admit I need 24-hour care? Or am I actually determined to follow my own path to happiness and the best possible quality of life?

Blogging

I am once again joining in with #JusJoJan. Yesterday I did write, of course, but I didn’t link up, since my post wasn’t for the prompt. Today’s prompt is to share about your blogging endeavors. Why did you start blogging? How did you come up with your theme? How has blogging affected your life? And so on.

I probably shared this on my older blogs a couple of times already, but I don’t think I jotted about my blogging on here. I was probably destined to be a blogger, as even as a young teen in the late 1990s, I longed for someone to read what I’d written. Not my parents, of course, but I was pretty open about my writing otherwise. My father at one point joked that I showed my new best friend my diary the first time she visited me. I didn’t, but I did show her some personal writings of mine. Those got her to feel pity for me. The friendship wasn’t healthy to begin with, as I was needy and clingy. The friendship ended not even half a year later. Today, I won’t go into that. It only serves to prove that I was very open in my writing from an early age on.

I got a computer with Internet access in May of 2002, when I was fifteen. Within six months of that, I’d started an online diary. The contents of that diary, unlike those of many of my later attempts at keeping a blog, are still available online. Their original location, on DiaryLand, might even still exist.

In February of 2007, I created my WordPress account and moved the contents of my diary to my first legitimate blog. This diary had over the years started to contain some more essay-like posts besides the diary-style navel-gazing. However, with DiaryLand, there was no way of organizing your posts by categories or tags. My parents criticized me for being too personal in my diary. I didn’t intend on becoming less so, but now I could put all my navel-gazing into a category called “Personal” for people to skip.

I have had three blogs (if I include this one) that were lasting. First, I had said blog moved from DiaryLand. Then I had Blogging Astrid, which I originally intended to keep alongside this blog. That didn’t work.

A Multitude of Musings, the blog you are now reading, is, in fact, a restart of another relatively long-lasting blog I wrote in 2011. I am a bit sad that I deleted its content years ago, but I can’t undo that. Still, my stats say the day I had the most views was in 2011.

Blogging has had a huge impact on my life. My husband checked out my blog – the one that had been moved from DiaryLand – before he asked to meet me in real life. This meant he already knew me pretty well before we’d first met. In this sense, my marriage makes up for the friendship I wrote about above, as my husband chooses to stick by me despite my openness. I don’t encourage him to read my blog now, but if he wants to, he can. He’s occasionally been cross with me for sharing something about him. I try only to share the positive now.

Why did you decide to start blogging? How has blogging impacted your life?

#IWSG: Am I a Writer?

About three years ago, I told my then day activities staff that the number one item on my bucket list would be to write my autobiography. I have said I want to be a writer too many times. Now of course I am a blogger, and my blog posts consist exclusively of words, but does that count?

To kick myself in the butt a bit, I am joining in with the Insecure Writer’s Support Group (IWSG). This is a group of (aspiring) writers who encourage each other via monthly blog hops, a Facebook group and more. I’m still not sure I belong there, as I don’t even know whether I still intend on ever publishing that autobiography, even if I get to write it. I am not sure I’m good enough to publish anything. Of course, I already got a piece published in an anthology in 2015, but does that really count? Besides, it was non-fiction and I’m still unsure whether the IWSG is intended for fiction writers only. Given that my biggest supporter in life, my husband, says my fiction is rather unimaginative, I don’t think I’ll ever attempt my hand at that again, even though sometimes I want to. Insecure I am, at least. The question is whether I’m a writer.

One of the ideas of the IWSG blog hop is to answer monthly questions about your writing. This month’s question is about questions: what are the most and least favorite questions people ask about your writing? I think my favorite questions are about my process and the least favorite ones are about the content. I hate it when my husband asks me what I’m blogging about, because I construct my blog posts as I write. I also write much better than I speak, so I would rather just show someone what I’ve been writing than summarize it. Then again, I don’t like showing those close to me what I’ve written either.

What about you? Are you an insecure writer?

Recovery

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.

To Live a Meaningful Life

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Dreams I Had for Myself as a Child #Write31Days

Welcome to day 18 in #Write31Days. Today’s post is all about dreams and life visions. Specifically, I am sharing the dreams I had for myself as a child.

The first dream I remember having about what I’d be when I’d grow up, was a writer. I may’ve said as a KIndergartner that I wanted to be a princess or whatever, but as soon as I could write with some confidence, I wanted to make my career out of that. I remember my parents telling me pretty early on that writers usually don’t make a living writing, but I didn’t care.

As I said before, I started out wanting to write fiction. I didn’t keep a journal consistently until I was thirteen and fiction was all that I knew before then. I didn’t get access to the Internet until age fifteen, but by the time I had an Internet connection, I was hooked on non-fiction.

Another dream I had for myself as an older child and teen, was to become a teacher. My ideas varied as to which grade or subject I’d like to teach. I definitely looked up to my teachers, so it’s no surprise I wanted to be one.

When I was around twelve, I started to deveop a dream of becoming a psychologist. I wanted to help children who were likely to fall through the cracks, as I had a feeling I was. I started hoping every episode of my parents’ favorite news program had a feature on kids with psychological problems. Once, there was an episode on about autism and I was hooked. This was nearly ten years before my own autism diagnosis. I had a feeling I was somehow like the boy in the program. Similar with a seventeen-year-old girl who was being restrained in a psychiatric hospital in around 1997. She was too smart for intellectual disability services but didn’t belong in psychiatry either. Something clicked with me, but obviously I couldn’t put my finger to it. I still really can’t.

When I was sixteen, I developed another dream. I wanted to study in the United States once in college. I would be majoring in American studies at university in Nijmegen, which'd offer motivated, talented students the opportunity to study in the U.S. for six months in their third year. I was at the time pretty sure I'd be talented enough. I loved reading up about American cities on City-Data.com.

Looking back, obviously, I didn’t make any of my dreams come true. I write, but not for profit and I don’t intend on it ever at all. I have some education in psychology, but am nowhere near a degree.

At the back of my mind, there always was that seventeen-year-old girl in the isolation room in the psychiatric hospital. I’ve not become her either, but I’ve come close. Then I rose up above my fate and now I’m an advocate. I’m happy as I am now.

Where Do I Belong? #Write31Days

One of the questions in The Self-Exploration Journal is simple, yet not so simple to answer. It is: “Where do you belong?” For today’s #Write31Days post, I am going to attemtp to answer this question.

I am a restless person. Even though I crave stability, I keep fleeing from wherever I am. I can never seem to find a place where I feel I belong.

I must say though, it probably has to do with control. I have a pretty horribly external locus of control. This means that I have a feeling that others or circumstances control my life, rather than life being a bunch of choices I make. This isn’t necessarily healthy, but in y case, it is somewhat realistic.

I grew up with parents who had my life planned out for me. I knew by the time I was nine that I’d leave the house at eighteen to go to university. It scared the crap out of me. Lately, I’ve been feeling an insider who holds these memories.

I left the house at nineteen to go into independence traing. That wasn’t what my parents wanted, but I for the first time in my life showed some major rebellion. Even then, I needed my parents’ albeit reluctant approval to actually take the step.

I continued to consistently seek approval from others for my major decisions. This may’ve been a major reason I got moved into independent living after the training home despite the fact that the staff and I agreed this wasn’t the best possible placement for me. The staff after all, had promised my parents they’d prepare me for independence.

I landed in a mental hospital three months into independent living. By this time, I’d lost every bit of self-determination I had. I didn’t know what I wanted and just let the psychiatrist admit me to the hospital.

I regained a small amount of self-determination over the years of my hospital stay, only to have it all destroyed by my last psychologist. She said I was being dependent, not for letting others make choices for me or for needing their approval, but for demanding care she felt I didn’t need.

Now I’m living with my husband. I don’t feel safe here. Not relationally – my husband is lovely. I mean that I lack the support I feel I need.

So I often flee this place too. I don’t feel like I belong. But will this ever change? Will I ever find the peace of mind to live a stable life without needing to constantly be on the run?

Maybe if I get into long-term care, I will. After all, then I’ll hopefully finally feel safe without the pressure of needing to be re-assessed for care at least every year. Then I can have goals that I can take years to maybe meet or maybe not. Maybe then I will find a place where I belong.