Monthly Archives: April 2018

Identity: Who Am I Right Now? #AtoZChallenge

Welcome to day 9 in the #AtoZChallenge of random reflections. For my letter I post, I choose the word “identity” as a thought starter. In the eBook 23 Days Self-Discovery Journaling Challenge by Mari L. McCarthy, the first exercise is to write about who you are right now. The exercise asks you to describe who you are right now with regards to various aspects of your life, such as family, friends, work, hobbies and spirituality. This sounds like an interesting challenge, so here goes.

1. Family. I am proud to be a wife. I am a daughter and a sister, though my contact with my family of origin is at a low level due to distance and various other circumstances.

2. Work. I don’t have a paid job. In fact, Facebook lists my blog as my place of employment, but I’ll get to speak about that later. I do day activities at a day center for people with intellectual disabilities. I like it when I can help out the staff or help other clients. I like snoezelen, going for walks and simple cooking activities.

3. Social life. My social life consists primarily of online contact with peers. I am active in hundreds of Facebook groups and on several E-mail lists. Through these venues, I’ve “met” quite a few interesitng people.

4. Art (and crafts and self-expression). I have to interpret this category broadly, because I’m not really an artist. I write. This is my primary form of self-expression. I also tried my hand at many crafts, but haven’t yet been able to be successful.

If I’m supposed to write about what artsy stuff I enjoy, I’m a big fan of YA fiction and memoirs and of country music.

5. Hobbies. I am an avid blogger and finally seem to be able to get back in the swing of it. I love sharing my views, experiences and interests with the world.

6. Spirituality. I believe in God and consider myself an extreely progressive Christian. That being said, I derive meaning from many spiritual sources, including New Age’ish stuff.

Home: Describing My Dream House #AtoZChallenge

Welcome to the #AtoZChallenge of random reflections, day 8. While on the phone with my sister today, we were talking house hunting and the A to Z Challenge and she suggested I pick this as my word for my letter H post. That’s a fabulous idea! For today’s post, I’m going to describe my dream house.

First, I’m going to describe my dream house in a mostly realistic way. In other words, I’m going to describe a house we will likely be able to afford in the foreseeable future. I did a post describing my dream house on an old version of my Dutch blog several years ago. Then, my husband and I still lived in a second-floor apartment. Well, I didn’t live there, as I was institutionalized, but I did pay part of the rent and intended on moving in there sometime. I never did.

I mentioned three things my dream house would have. These were a garden, a room just for me to be my office and a bath. I have two of these things in my current house: the garden and a larger office than I imagined back then. However, by contrast, my husband’s office is really small. In my dream house now, there would be three bedrooms like in our current house, but their size would be more evenly distributed. I, after all, could do with a somewhat smaller office while my husband deserves a larger one.

My husband would like our house to be at most the size of our current house to save on cleaning. He once said he’d like a larger garden, but I’m not sure he still wants this. I want a garden big enough to plant some berry bushes and an apple tree or two in, but I don’t need a lot of space.

The kitchen would be larger and/or more efficiently modeled than our current one. And yes, there’d be a bath in the bathroom. Or there’d at least be the possibility of remodeling the bathroom so that a bath can be placed there. I know this is the least likely wish to come true.

Now as for my dream house if I won several millions of euros in the lottery. In addition to all the things my “realistic” dream house would have, there’d be an additional fourth bedroom that I would model (or have someone else model!) to be a sensory room. It’d have a waterbed in it and lots of tactile and audible sensory materials. Because with the upstairs having four bedrooms, there’d be more room downstairs too, so I’d create a gym room with a large trampoline in it. I’d also like a pool. My husband would of course get a large garage.

What does your dream house look like?,?P>

Grateful: Three Things I’m Grateful For Right Now #AtoZChallenge

Welcome to day 7 in the #AoZChallenge. For my letter G post, I once again chose a prompt from the 397 journal writing prompts and ideas. This prompt is “Grateful”. Today, I am listing some things I am grateful for right now.

1. Sunny weather. Today marked the first warm day of the year with the temperature rising to about 21 degrees Celsius. I love the sunshine, even though I don’t usually go outside on my own. That being said, my husband put an enclosure in my room in which I can put our cat Barry for a while should I want to sit in the garden. Barry in fact loves his enclosure and lies in it a lot even though I haven’t yet put him in there.

Today, my husband and I drove to Kleve across the German border to go for a walk and eat some croissants. My husband used to live there for a year about eight or nine years ago. It was interesting to see how much the city had changed.

2. Nice food. I ate some lovely food today. Croissants are one of my favorite types of bread. Once we got home, my husband microwaved a bapao for me. By this time, it was already almost 6PM, so we decided not to have a full dinner. Instead, we drove to the supermarket and bought a salad. Mine was Mexican chicken and it was great.

3. My mood improving. I’m telling myself it cannot yet be the increase in my antidepressant dose, but my mood is definitely better than it used to be. It helps that I have something to commit to, ie. the #AtoZChallenge. However, with my depressed mood of the past few months, I wouldn’t have been able to stay committed. It’s not easy now either, but it’s doable.

Other than the fact that I’m more active, I’m also generally more positive. My irritability is still the same, but I’m having a more upbeat outlook on life. For example, two weeks ago I was pretty sure I couldn’t cope with independent living at all. Now I am looking at the prospect of possibly moving out of area, which might get me less care, with a relatively positive attitude.

What are you grateful for right now?

Friends: What Makes a Friendship Tick? #AtoZChallenge

Welcome to day 6 in the #AtoZChallenge of random reflections. Today’s prompt comes from the 397 Journal Writing Prompts and Ideas eBook again. It is “Friendship”. The attached question is: “What makes a friendship tick?”

Now I happen not to have any close friends other than my husband, but I definitely consider my husband my friend in addition to my partner. What both of us appreciate about each other, which I think non-romantic friendships may share, is our sense of humor. We have a lot of “inside jokes” and our own terminology that only the two of us understand. For example, when one of us goes on and on boring the other, we say “banana spider”. This one in particular has been in our vocabulary for many years.

Our friendship isn’t just based on humor though. Over the years, we’ve been through quite the hard times, for example with my institution stay. I met my husband for the first time six weeks before being admitted to the mental hospital and he stuck by me through all the 9 1/2 years of it and the year I’ve been out of it so far. Humor helped us through, but so did a serious discussion every now and again.

I have other people I am close to, but these friendships are usually based on shared experience, such as them having the same disabilities as me. Though my husband and I met on an autism forum, he is neurotypical and otherwise non-disabled. He has seen me through most of my adult life, but he does not share the same experience of being disabled. Like he once said “needing social care is like a different world”. In this sense, I’m glad to have peers, some of which I’m close to online and may meet every once in a while and some of which I only talk to very occasionally. This obviously also depends on geographical location.

The first peer I met was a woman who was on a support list for my eye condition. I first started E-mailing her off-list in 2004 and we’re still online friends. She lives in the United States, so we might never meet in real life. Both our lives have also moved on since 2004. She is now independent and successful, while I’m just sprouting branches in the real world. However, I appreciate being her online friend.

Emotions: Dealing with Emotion Regulation Issues #AtoZChallenge

Welcome to day 5 in the #AtoZChallenge of random reflections. For my letter E post, I focus on emotions. In this post, I’ll explain what it is like living with emotion regulation issues and how dialectical behavior therapy helps. Both I and my treatment team prefer the term “emotion regulation difficulites” over “borderline personality disorder traits”, as my emotion regulation issues are likely in part due to my autism. Also, borderline personality disorder is very stigmatized. Now I know the solution to that is not to avoid the term, but I do feel I’m not the “classic” borderline.

First, I have difficulty understandign my own emotions. This is called alexithymia and is relatively common in autistic people. I can usually tell whether I’m feeling “good” or “bad”, but not whether “good” is joy or love or “bad” is anger, sadness, etc.

I feel “bad” far more often than I feel “good”. This may be because I suffer with depression too. I however tend not to express my depression as sadness. Rather, I express all “bad” feelings as irritability. Over the years, I have gotten slightly better at knowing when I’m genuinely angry and when it’s another feeling that I express as irritability.

In dialectical behavior therapy (DBT), the treatment I follow for my emotion regulation difficulties, we learn to counteract emotions by acting opposite to how the emotion “makes” us act. For example, one skill that I’m trying to practice is to half-smile, accepting the situation as it is even if I don’t like it. I initially thought that acting opposite to emotion was acting cheerful whenever a cheerful mood was expected. For example, I’d greet my husband enthusiastically when he’d come home even though I still felt like crap. Now I know that you’re not supposed to “fake it”, but that acting opposite from your initial impulse might help you achieve your goals. For exaple, if I feel like crap and want to stay in my room all the time, it may be more effective if I reach out to my husband instead.

Dialectical behavior therapy also teaches me about the misconceptions about emotions I may have. One of them is that some emotions are just stupid and shouldn’t be felt. Another is that emotions come up for no reason at all. In fact, emotions all happen for a reason and as such have value. Now that I write this, I realize this is the strongest argument against fake cheerfulness. It is important to acknowledge an emotion without judging it, but also without dwelling on it too much. Mindfulness, as such, is the first skill of DBT.

Disability Services and Moving: Long-Term Care and Community Support #AtoZChallenge

Welcome to my letter D post in the #AtoZChallege of random reflections. For today, I have chosen to give a brief introduction to disability services in the Netherlands. This might be a boring topic, but it is currently on my mind.

You see, though several years ago I planned on living in our house in the tiny village for the rest of my life, this is unlikely to happen. My husband has been talkig about moving for almost the entire time I’ve lived with him. For a long while, I decided that we’d have to stay local, as in, within Bronckhorst municipality. The reason for this is my disability. Let me explain.

There are basically two categories of care people with disabilities can get. One is through the Long-Term Care Act. This is a national bill that governs 24-hour residential care. In order to be eligible for Long-Term Care Act funding, you’ll have to need 24-hour care for the rest of your life because of a physical, intellectual or sensory disability or a somamtic or psychogeriatric illness. Mental illness, in other words, is not a ground for this type of funding even if you need 24-hour care and are likely to need it for life.

The other type of care is Community Support Act care. The Community Support Act allows local authorities to decide on care for anyone who needs it but doesn’t qualify for Long-Term Care Act funding. As such, anyone who needs 24-hour care for a while, or who needs less than 24-hour care, or who needs care due to a mental illness, will fall at the mercy of the local authority.

I fall under the Community Support Act. As such, the social consultants in Bronckhorst decide on my care or lack thereof. Bronckhorst or my social consultant in particular has been really easy-going with providing care funding. Should my husband and I move to another municipality, we’re at the mercy of that area’s local authority. This is the reason that I decided we shouldn’t ever be moving out of area.

Because the housing market is really tight in Bronckhorst and there’s nothing within our budget, we’re exploring options for moving out of area anyway. I hear very mixed stories about whether this could be worth the risk.

Children: On Being Childless Sort Of by Choice #AtoZChallenge

Welcome to day 3 in the #AtoZChallenge 2018, in which I share random reflections. Today, for my letter C post, I’m going to write about children – or the lack thereof. YOu see, I am childless sort of by choice. Want to know more? Read on.

As regular readers of this blog will know, I have multiple disabilities. I am blind, autistic and mentally ill, among other things. Any one of these disabilities would’ve been grounds for involuntary sterilization had I lived some forty years ago. Even now, it may be relatively easy for me to get sterilized should I so choose. After all, many people are still of the opinion that certain people with disabilities shouldn’t have children.

Now I should be politically correct and say I strongly disagree with this stance. However, with regards to my own personal situation, I don’t. I can see why I wouldn’t be fit to be a parent and the reasons are not entirely unrelated to my disabilities.

I never really had any sort of strong “Mommy feelings”. That being said, as a child and teen, I always thought I’d have children when I’d grow up. It probably was society’s expectations that planted this idea in my head, as I never quite imagined how lovely it would be to hold a wee little baby, or how I’d ooh and aah at my four-year-old’s clay sculpture.

As a child, I obviously couldn’t believe why people didn’t like children. I was a child and I liked myself. Besides, everyone has been a child at some point, so how could they not like children? Now that I’m an adult though, I don’t particularly like children. I don’t hate them either, but I don’t feel I should be having one or more myself.

Society’s expectations do not get unnoticed by me though. This I think is the main reason I’m still not entirely happy with my choice not to ever try for a child. I also sometimes wish I would be a good mother, but to be honest, I can’t be.

As such, I find myself inbetween the childless not by choice and the childfree/childless by choice communities. I am childless by choice, but I a not really happy woth this choice.

Beautiful: What I Like About Myself #AtoZChallenge

Welcome to day 2 in the #AtoZChallenge of random reflections. Today’s prompt comes from the eBook 397 Journal Writing Prompts & Ideas. The prompt word is “beautiful”. The prompt attached to it is to descrie what you consider beautiful. Instead, I am going to share what I like about myself. First, I’ll start with my appearance and then my character.

Outwardly

I don’t particularly like my appearance, but I don’t hate it either. In fact, over the past few months, I’ve come to appreciate it a little more. I could post a selfie here so that you can see whether I’m actually the goregous princess I’ll describe myself as below. No, just kidding. Besides, I’m terrible with taking pictures and not just because I’m blind, so you’ll have to go with my description.

First, the part of my body I’ve come to appreciate more recently is my figure. Over the past ten months, I’ve lost nearly 10kg. I stll have quite the belly, but it’s less obvious than it used to be.

Then there is my head. I like the color of my hair, which is very dark brown, almost black. I still don’t have grey hairs, thankfully. That is, my husband pulled out one a few months ago, but apparently it hasn’t come back. I also like the fact that my hair is quite wavy, althoug as I need a haircut, the waviness is hardly visible now.

I think I like the color of my eyes too. I never had enough vision to see it in the mirror, but I’m told I have blue eyes. My left eye appeared quite grey from a huge cataract until I had the cataract removed in 2013. The surgeon told my husband after the procedure that, even if I weren’t to gain any vision, the surgery would yield cosmetic improvement.

Inwardly

Then on to what I like about my character. First, there is the fact that I’m quie strong-willed an stubborn. Some people say I’m very perseverant, while others say I’m the exact opposite. However, if I really feel strongly about something, I’ll stand my ground.

Then there is my cynical sense of humor. I remember that, when I had only been admitted into the mental hospital for a day or two, I was already cracking jokes about the difference between the patients and the staff in a psychiatric hospital. My cynicism really keeps me going when I’m depressed.

What do you like about yourself?

Astrid: The Story Behind My Name #AtoZChallenge

Welcome to the 2018 #AtoZChallenge. This year, I’ll be posting the A to Z of random reflections. For the letter A, I chose my name: Astrid. In this post, I’ll tell the story behind my name.

I was born three months prematurely. At the time I was born, my parents hadn’t yet decided on a name for me. As a result, my hospital bed at first had “Baby Van Woerkom”, Van Woerkom being my last name, on its name tag. My father hated this so much that he quickly came up with a name and that became Astrid.

I am named after Swedish author Astrid Lindgren. As a child, I loved her books. I don’t think Astrid Lindgren is that popular in the English-speaking world, as I can hardly find any English translations of her books.

I don’t have a middle name. Neither does my sister Sigrid, who was named after Norwegian author Sigrid Undset (whose books I don’t know at all). As a teen, I would often give yself a middle name, usually one that was ridiculous combined with Astrid, such as Elena.

My mother says that she at one point entertained the thought of naming me Ulrike. Ulrike Meinhof was a well-known German leftist terrorist and yes, I would’ve been named after her. So glad I wasn’t, as, though I’m left-wing politically, I vehemently oppose violence. My husband jokingly calls me Ulrike sometimes. In the recent local elections, I voted for a leftist whose first name was Ulrike. I had harldly a clue who to vote for and her party came up highest in the voting guide and she was its highest woman on the list.

The name Astrid is derived from Scandinavian “as”, meaning god and “frid”, meaning beautiful. The name became most popular in the Netherlands and Belgium after queen Astrid of Belgium, who was very popular. Nowadays, only a few girls each year are named Astrid.

Do you have an interesting story to tell about your name?