#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.

#IWSG: Writing Without Reading?

Posted on by Astrid
IWSG

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) day. This months’ optional question is about your thoughts re whether reading is required for writing.

In August, I did a good amount of both reading and writing. In September, my reading went almost entirely out the window and I also wrote far less than I intended. However, I still managed to write at least one blog post each week.

To answer the question, for fiction writing, I think reading is essential. Of course, this means your writing is a mixture of your own ideas and someone else’s, but a good fiction writer (which I’m not) can write imaginatively enough to appeal to readers looking for an original viewpoint. My own fiction writing has always bordered on plagiarism, if it wasn’t actually plagiarism.

For non-fiction, I tend to think that original viewpoints are good, but they require some level of familiarity. I have read blogs where the author’s words were so jumbled that I couldn’t make sense of them. I also happen to love personal essays or blog posts I can relate to.

I for one love both reading and writing prompted pieces. I like to read about other people’s original perspecctives on a common theme. For this, reading is essential for writing. Even so, I don’t tend to read others’ responses to prompts I participate in before posting my own. So well, there are two sides to this story and the truth is probably somewhere in the middle.

Why I Am in Long-Term Care

Posted on by Astrid

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

Freewrite on My Transition Into Long-Term Care

Posted on by Astrid

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

At Every Age

Posted on by Astrid

There’s so much I want to write about, but I can’t get myself to sit down and actually write. Well, sitting down is not the problem, as I’m probably still a pretty sedentary person, but actually writing is.

Today, I”m joining in with Finish the Sentence Friday (#FtSF). This week, the prompt is to write about your (or your child’s or whoever’s) favorite age.

I used to think being younger was better. I don’t really know why. Maybe I was conscious at an early age of the fact that life is finite, so growing up meant getting closer to death. I also thought that growing up meant an increase in responsibility, which scared me from an early age on. After all, I knew from as young as age nine on that I was supposed to leave the house and go to university by eighteen. That’s a huge burden of awareness to carry as a child that young.

Now I think being at every age has its beauty. I do worry that I’m declining in health already, and this is where the sitting down comes in. I really need to get more active, because I know that at every age, you can do something to improve your health and wellbeing.

I also think that, at every age, you can retain or regain some level of childlike wonder. We see this in the alters, who each represent a particular stage in development. Some are grown-up for their age, like Jace, the 9-year-old who was told about going to university and leaving the house. Others are more childlike, like Milou, who is 8-years-old and very playful. We also have an adult, Marieke, who, though she’s 32, enjoys sensory learning and play.

In my fellow clients at day activities, I also see the beauty in every age. They are intellectually disabled, most with a so-called “mental age” under six. Now the concept of “mental age” is highly ableist. However, learning about normal child development can teach us some interesting things about myself and others with developmental disabilities anyway. I was intrigued to read about emotional development as it pertains to people with mild intellectual disability and as it pertains to me in some way too. The consultant psychologist assigned to my case in my care-finding process, said I function emotionally at a 16-month-old level. This explains a lot of why I act the way I do. Interestingly though, we don’t have an alter who identifies with this age.

In short, I think every age and stage in development has its beautiful sides and its ugly sides. Childhood means your parents still have a lot of control over you, but it means you have relatively few responsibilities. Adolescence and young adulthood come with increased responsibility and freedom. I don’t know yet what middle age or old age will bring, but I’m confident I’ll find the beauty in it.

Working On Us Prompt: Family Relationships and Boundaries

Posted on by Astrid

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.