New Normal

Posted on by Astrid

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

When I Was Fifteen

Posted on by Astrid

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It

My 2021 Word of the Year

Posted on by Astrid

Okay, the first week of January is already over and people have come to say it’s weird to wish each other a happy new year even if this is their first time meeting in 2021. It may be a bit late for me to pick a word for the new year. Then again, it’s one of Mama Kat’s prompts for this week. Besides, last year I didn’t choose my word for the year until January 10. I had the flu to excuse it with then, but oh well.

Last year I picked “Wellbeing” as my word for the year. I was somehow convinced it’d be a bad omen though. It wasn’t, in the sense that I didn’t end up in a major health crisis in 2020. Then again, the world at large did.

This year, I’ve had a word in mind for several weeks now and yet I keep making up my mind about it. I want to deepen my faith this year, so shouldn’t something like “faith” be my word of the year. That’d be too easy though. Rather, I based my word for 2021 on Bobby Schuller’s book. It is: BELOVED.

I want to focus this year on the creed of the beloved as Schuller outlines it in his book You Are Beloved. It is:
I am not what I do.
I am not what I have.
I am not what others say about me.
I do not need to worry.
I do not need to hurry.
I can trust my friend Jesus.

I also want to focus this year on my relationship with God and with others. After all, “beloved” does not just apply to me, but to my husband and others around me too. The fact that I am a beloved child of God, also, implies that I need to accept God as my Heavenly Father.

Now of course my thoughts are going back to the idea that this word of the year would be tempting fate. I fear that, now that I chose “Beloved”, it will mean I’ll lose my husband or other important people in my life this year. Even if this happens, though, I can show my love for them. I can start to express love right now, after all.

What is your word for 2021?

Mama’s Losin’ It

#IWSG: Turn-Offs in Other People’s Writing

Posted on by Astrid

IWSG

Yay, it’s the first Wednesday of the month and you know what that means? It’s the Insecure Writer’s Support Group’s (#IWSG) meeting day.

I did pretty well in the writing department over the month of December and early January. I in fact am feeling very motivated to write. That being said, I do feel disappointed about not having realized my bigger writing dream of 2020, which was to submit another piece for publication in an anthology. It’s probably due to fear of rejection. I mean, blogging is a relatively safe way of expressing one’s writing abilities, in that it doesn’t really come with rejection. I mean, if I start a blog and it’s a total failure, I just won’t attract any readers, but no-one is going to directly tell me.

For 2021, I once again aim to submit at least one piece for publication. I just can’t bear to say for another year that I’m a published author because of that one piece I had published in 2015. I can’t control editors’ selection criteria, but I’ll have to at least try one more time.

Now on to this month’s optional question. The question is what, as a writer, turns you away from other people’s books, makes you not finish a book or frustrates you about other people’s writing.

The first thing that came to mind, is not a style issue or a writing flaw, but factual errors in the story. For example, in Rules for 50/50 Chances by Kate McGovern, one of the characters’ mother and sisters have sickle cell disease and the characters keep talking about how this character didn’t inherit “the gene” and how another disease is recessive, as if sickle cell disease is inherited via a dominant gene. Well, I am no geneticist, but I am pretty sure it’s recessive.

It isn’t that such an error stops me from finishing a book altogether if it’s an otherwise good story. I think I even gave the aforementioned book four stars on Goodreads and I definitely did finish it. It was the thing that kept me from giving it a five-star rating though.

In a similar way, I am usually slightly annoyed when authors invent things into their otherwise-realistic stories. For example, I didn’t like the fact that John Green invented a cancer drug for the purpose of the story in The Fault in Our Stars. I did feel better because he admitted it at least.

The one thing that does stop me from finishing a story, is an unrealistic portrayal of certain settings in a story that’s supposed to be realistic. For example, I stopped reading The Memory of Light by Francisco X. Stork as soon as I read that the character got daily therapy sessions. That’s not happening in any psych hospital. That is, it might’ve happened in the times of psychoanalysis in the 1950s, but currently there’s no money for that.

I think I really need to get more flexible in my approach to fiction. It is, after all, fiction.

2020: The Year in Review

Posted on by Astrid

So 2020 is almost over with, thank goodness! Not that it was a totally bad year for me personally, but I really hope 2021 is better for the world at large.

I started the year hoping to settle in at the care facility. I did, but it did take some more accommodating from the staff than I’d expected they would be willing to. In July, for this reason, I was granted the highest care profile for blind people (I had the second-highest until then). I felt very mixed emotions about it. I mean, even though I had originally asked my support coordinator to look at that care profile when applying for my long-term care funding, I do remember her saying I would definitely not qualify. It turned out that I did.

Then in November, after I’d been in some major crises, the staff suggested I sign an official request for extra care hours. I just heard this morning that it got approved. Next week, the staff and manager are going to discuss how to use the extra care and whether new staff will need to be hired.

I hoped to settle in at the day center. That didn’t work out, as the center closed down due to COVID in mid-March. It has since reopened to some of the homes, where clients can utilize a specific room for their home. However, many clients in my home fare better now that we get day activities from the home.

COVID also had its consequences for my marriage. I had just been trying to learn to use public transportation, like I’d hoped I could, when COVID hit the Netherlands and care facilities were closed to visitors. Even though we’re in a second lockdown now, my facility does allow visitors this time around. However, my husband and I agreed it wouldn’t be sensible for me to use public transportation as of now.

As a result of the first lockdown, I didn’t see my husband at all for March, April and most of May. Thankfully, our marriage survived.

Looking back at my hopes for 2020, I see I did pretty well considering the circumstances. I mean, I didn’t settle in at the day center or learn to use public transportation, but like I said above, that’s to blame on COVID.

Health-wise, I didn’t lose weight, but I am much more active now than I was in 2019 and I do eat okay too. I could certainly do better, like I tried for some weeks in late October and early November. I’ll need to activate my water reminder app again too.

With respect to my mental health, I certainly took good care of that. I had had it as a secret wish to lower my Abilify dose, but I never did. However, that’s okay considering I wasn’t doing as great mentally as I expected to be. I hope I did finally find a PRN medication that helps me though.

I also blogged much more regularly in 2020 than in 2019. I didn’t do any other writing projects, mostly because I feel too inadequate.

Lastly, that self-care excuse of a goal I definitely did attain. I love love love essential oils.

How was your 2020?

A Favorite Childhood Gift

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

A Winter Memory

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts for this week is to share a favorite winter memory. Now I don’t personally like winter. I however have this weird kind of love/hate relationship with it and especially with snow. It looks beautiful, but my already almost nonexistent orientation and mobility skills go out the window entirely when it snows. Still, I am going to share a memory involving snow. It’s not really a cherished memory, but I’d really like to share it.

On Friday, November 25, 2005, the eastern half of the Netherlands was suddenly hit with a big snowstorm. I lived in Apeldoorn in the central-eastern part of the country. During the week, I attended a rehabilitation center for the blind also in Apeldoorn at the time. It was a residential center, because blind people from all over the country went to it. That being said, the center closed on Friday afternoon for the week-end.

The snowstorm started at around noon. I left the center to go to the bus stop for the bus home at around 1PM. I hardly made it to the bus stop, only to find out public transportation had been canceled because of the weather.

I walked back to the center to call a ParaTransit taxi home. They first informed me it might take several hours for the taxi to arrive, then called me to inform me all transportation had been canceled.

By 4PM, my sister offered to come to the center by tandem bike to take me home. This sounded crazy even to me, but she persisted.

I need to add here that, like I said, clients of the center came from all over the country. The day staff were calling the manager by this time to request clients who lived out of city could stay at the center for another day. This would’ve been doable, as the center did have beds for during the rest of the week and the staff offered to get them some takeout food and stay for the night. The manager though refused.

By 4:30, a staff had decided to drive me home. My sister did end up cycling through the snowstorm to the center, but thankfully she didn’t have to make the way back with me on the tandem as well. That would’ve been nearly impossible, as I struggle to put in enough strength to do my part of the biking even in normal weather.

Some clients ended up staying with staff for the night, including blind staff who didn’t really feel comfortable with it. Of course, the manager didn’t take in any clients. Some other clients ended up being taken home by taxis in the evening. One of them made it home to southern Limburg, which is normally about a 2 1/2 hour’s drive, at five o’clock in the morning. The taxi driver ended up hitting the crash barrier on the way back north.

Needless to say the resident council, which I was a member of, filed an official complaint about the manager’s way of handling the situation. The man from southern Limburg was the resident council representative for the broader organization’s client council. He and the clients who’d had to stay with staff, were offered a sheepish apology and some flowers. The staff involved didn’t even get those.

Now that I’ve written this post, I realize November isn’t technically winter. Let’s call this a snowy memory then.

Mama’s Losin’ It

#IWSG: Seasons of Writing

Posted on by Astrid

IWSG

Today is the first Wednesday of December and that means it’s the last #IWSG day of the year. It’s already late in the evening and I’m not too inspired to write on the topic of writing. I guess I wasn’t too inspired during the month of November at all. I mean, I didn’t have any blog challenges to participate in, so I didn’t write as much as I did in previous months. My private journal and Drafts, an app I use for my random pieces of fiction and poetry, also remained largely empty.

I find myself scrolling past the many writing and poetry Facebook groups I’m in an not even looking at them. It isn’t that I don’t want to write, but it’s probably that I feel my creative juices have more or less dried up and I don’t want to see others’ beautiful work when I’m not able to contribute any myself. Call me selfish for that.

November is a hard month for me. Perhaps the hardest of the year. November 2 marks the anniversary of my major mental health crisis (which happened in 2007). That, combined with some form of winter blues, often has me depressed during November. I often feel less inspired when I’m depressed.

This year, my November was okay writing-wise. In 2018 and 2019, I published significantly fewer blog posts in November than this year. Then again, I’m doing pretty well writing regularly this year overall.

I am not sure whether, with the exception of blog challenges such as the #AtoZChallenge in April, there are any months I consistently blog more or less than others. With respect to my fiction and poetry writing, this tends to go in spurts and then stands still for a long while. This is the case for all of my passions other than blogging.

Six Is a Blank

Posted on by Astrid

Today, in The 365 Journal for Empaths and Healers, I came across a prompt that asked me what the six-year-old version of me would think about my life today. This is really hard. I have very few direct memories from before the age of around eight. Those I do have, are clouded by the stories my parents told me.

I mean, they said I was a very cheerful, laid-back child before the age of seven. I am pretty sure I wasn’t. Lisel (formerly Little), my 5-year-old insider, holds some very distressing memories. These concern both my time at the mainstream school Kindergarten and my time in hospital at the age of four.

Then six is a blank. I do have a six-year-old insider, but she most likely formed much later. Same for seven. Suzanne is seven, but she only feels she has to grow up too quickly.

To be honest, yes, six is a complete blank. While I do have some memories of age five and seven, I don’t have any of the year I was six. I know I transferred to the school for the visually impaired about six weeks before my sixth birthday. I know I laid the first stone for a new care home for visually impaired children just before my sixth birthday. Then I remember learning Braille with giant dots, but that wasn’t till age seven.

I am tempted to think six was uneventful. Then again, when I was asked to recall a memory from age four for an interview at age seven, I didn’t mention going to Kindergarten, being in hospital or any such to an adult significant events. Instead, I recalled my getting my favorite doll at age three. It isn’t that significant events just aren’t stored in a child’s memory, since a classmate was very clear about the year he developed a brain tumor and lost his sight. Could it be I dissociated at such an early age already? Or does this mean my going to mainstream school, being in hospital etc. just didn’t have the impact I think they had now? I’m not sure.

If I Have a Good Day…: Ramblings on Fear of Joy

Posted on by Astrid

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.