Illness or Injury

Today’s topic for Throwback Thursday is, as Lauren describes it, “Ouchies, owies and boo boos”. In other words, we’re asked to share our experiences of illness or injury when we were growing up. Now is an interesting time for this, as I’ve just recovered from the worst symptoms of COVID. Even though I had a mild case of it, I am tempted to take back my assertion that it’s “just a bad cold” even in my case. I’m still exhausted by 9PM, or at least was yesterday, and today just a walk around the day center had me horribly out of breath. Forget the elliptical, which I told my husband yesterday that I’d try to go onto today. Anyway, that’s as far as my current state of illness is concerned. Now, let me share about my childhood illnesses and injuries.

As a young child, until I had my tonsils and adenoids out as a Kindergartner, I was prone to colds and the flu. I can’t remember whether my parents let me stay home for most of these illnesses. Later though, we clearly had the rule that, if I ran a fever, I was sick and had to stay home. Otherwise, I wasn’t sick and had to go to school. Not that I remember ever “playing sick”.

I don’t think I was ever given medicine, such as painkillers, unless it was obvious from outward signs that I was sick either. I mean, I do remember having to take paracetamol as a child, but not for a headache or toothache. We did have a licorice-flavored cough syrup, but I only took it when my parents directed me to. In fact, it wasn’t until I was in my mid-twenties that I first learned to ask for medication myself. For the brief time that I lived independently and could take over-the-counter medications when I felt like it, I didn’t either unless a support worker directed me to. In fact, I remember buying a talking thermometer back then because I was feeling weak often and, relying on my parents’ rule that you had to have a fever to be sick, I wanted to know my body temp.

Similarly, I wasn’t taken to the doctor for minor illnesses or injuries usually, unless my parents decided they were enough of an outward abnormality to be taken seriously. I remember my father took me to the doctor one day when I was about fourteen because I had bad eczema on my neck. I didn’t see the need, but apparently it was so ugly that my father wanted me to get treated.

When I was about seventeen, I made my first appointment to see my GP by myself. I had a horrible earache, which turned out nothing to be the doctor could do much about, by the way. However, my parents said I also had to ask about getting treatment for my toenail fungus, which I didn’t consider particularly bothersome at the time. To be fair, I do now see they were right to be worried about my toenail fungus, even though it took me fifteen more years to finally get it treated properly. However, overall, I’d had it with their message that my outward appearance alone dictates when I should get help (medical or otherwise) and this was probably my first small act of rebellion. I never quite learned to gauge when I can trust my body’s signals (or my mind’s interpretation of them) and when I can’t. I’m finding that, for this reason, even up till this day, I rely mostly on other people’s judgment.

Pocket Money Tales

Today’s topic for Throwback Thursday is chores and allowances. Let me share my experiences.

Regarding chores, I could easily be short and sweet: no, I did not have any. Neither did my sister. We were raised with the expectation that we’d leave the house as soon as we graduated high school, but we were hardly taught any of the skills of independence, much less expected to contribute to the household on a regular basis. My sister was occasionally expected to do the dishes once she was about twelve or so. Same probably for me, but my parents quickly decided I took too long, didn’t do it right or made too much of a fuss over it, probably all three.

My sister, who’s non-disabled, somehow managed the skills of independence by observing my parents anyway. I, being blind and multiply-disabled, did not. When I left for the independence training home right after high school, I had virtually no skills necessary for living independently. I am forever grateful I persevered and decided to take this step rather than moving out on my own right away.

Regarding allowances, or pocket money as it was known in our family, the situation was a little more interesting. I got my first pocket money at age seven. I got one guilder a week. A few months later, I’d turn eight and my father promised me I’d get two guilders a week provided I’d stop leaving the lights on in my bedroom when I wasn’t there. The reason being that, if I no longer left the lights on, he would save on electricity and could give me more pocket money. I doubt it’d seriously make a difference of one guilder a week, but I’m not entirely sure he hadn’t possibly calculated it somehow. That’s how he is, after all.

That brings me to my next pocket money story, some eight years later.
I originally couldn’t remember whether we already used euros at the time. Not that it matters for the morale of the story, but I saw the official documentation relevant to this story and now know we already had euros. I must’ve been sixteen and was rather angry because my sister got a higher allowance than I’d gotten at her age, so I now wanted more too. At first, my parents got all defensive, calling me selfish because I was playing the “not fair” card. Then, after both of us at calmed down, my father asked me to write a budget of things I’d need pocket money for. If it was within reason, I’d get what I’d asked for.

I had asked for €10 a week. I created a budget (that’s the “official documentation” I referred to above!) fitting all my personal expenses, including candy, jewelry, memberships to the children’s choir and the political party I was a member of at the time, into this budget. Ultimately, my budget showed I needed €555,60 a year. When my father saw it, he commented that I’d been far too careful to try to fit my budget into what I’d demanded. I particularly remember him saying he couldn’t believe I’d just spend €2,50 a week on candy, for example. And I must admit he was right. My father told me that €100 a month was a more reasonable allowance and so it happened that I got more than twice the amount of pocket money I’d originally fought for!

Were you taught about budgeting as a child?

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Not Quite California Dreamin’ #SoCS

SoCS Badge 2019-2020

When I was a teen, I dreamt of going to the United States in my third year of college. After all, I was going to be an English major, choosing American studies as my specialty. Then in my third year, I would be incredibly motivated and talented and would be allowed to go on an exchange student visa to the United States.

I had already picked my preferred cities to go to. Most were suburbs of Boston. First, it was Lynn. Then Somerville.

Then, at one point, I got obsessed with Columbia, Maryland, a suburb of Baltimore. Then, finally, Silver Spring, MD, a suburb of DC.

None of these were college towns as far as I know, but I always dreamt of going to college in the city and living in the suburbs eventually. Because, after all, with my incredible talent (ahum) and affirmative action, I calculated that I’d be allowed to stay for some professional career and never go back to the Netherlands again.

Now that I think of it, it’s interesting that I never dreamt about going to California for my studies. I would say that most people choose either the east or west coast. At least people from Europe most likely do, with the Midwest, South and Great Plains being far more conservative. I just envisioned living in New England or the DC area.

And just for the record, it all never came true. I never even majored in English at university. I still haven’t been to the United States, though I hope to visit there someday. Mostly to meet some people I know.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt this week is “Cal-“. I could’ve written about calendar calculation, calories or Calibre (an eBook management tool). Instead, some of the other participants’ posts inspired me to write about my American dream.

When I Was Fifteen

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 Taste in Music as a Teen #Blogtober20

Today’s prompt for #Blogtober20 is “Fame”. For this reason, I’m going to share some music that was famous or that I liked as a teen. I once heard that people’s lifelong taste in music is shaped between the ages of 14 and 24. I don’t know how true that is, as I’m still developing my taste. Anyway, here goes.

1. The Backstreet Boys. Okay, I didn’t really like those, but I pretended to. When I was about eleven, so still a preteen, my mother encouraged me to develop a taste in music, because that was what my peers were into or so she thought. I have shared before that I hung Backstreet Boys posters on my wall without ever having heard any of their songs.

2. Anouk. She is a Dutch pop singer. I had two of her CDs, although I was never a huge fan.

3. ABBA. Well, the A-Teens, an ABBA remix band. Until I was about 20, I didn’t even know they were an ABBA imitation and spelled the band name “Eighteens”. I thoroughly enjoyed this music though and often danced to it.

4. The Corrs. I got a CD because it was recommended in my high school newspaper. Then I got two more CDs. Unlike Anouk, I truly loved this music.

5. World music. Particularly Latin. I had a lot of CDs with Latino music on them, although that included Spanish pop music like Macarena too. When I first met my now husband, he asked what type of music I was into and I said “world music”. I later played one of my favorite Latin music CDs for him and he was glad he hadn’t known this was what I’d meant by world music.

6. Protest songs, particularly Dutch ones. These were the songs my parents listened to on LP. I had some copied onto cassette tape too, specifically an LP from Robert Long. He was a protest singer in the early 1970s, but converted to Christianity later on and his older songs are hard to come by now.

What was your taste in music like as a teen?

#Blogtober20

Millennium: Growing Up Blind in 2000 #Blogtober20

I’m a bit late to publish my #Blogtober20 post today. Well, not as late as yesterday, but then I already had a post up in the afternoon. Today’s prompt is “Millennium”.

Let’s see… we’re now 20 years into the new millennium, which I realize isn’t even the “new” millennium to some adults right now, as they were born in 2000 or later. I always find it surprising that there are people who will be legally old enough to vote in next year’s national election who weren’t even born when politician Pim Fortuyn was murdered on May 6, 2002. Yeah, I’m getting old!

In 2000, I turned fourteen. I was in my first year at a mainstream grammar school. I had already decided I hated it, but my parents and teachers had decided that, if I failed, I’d fail within the first three months and those were up. Woohoo, my mainstream education was a success! Okay, it was, since I did graduate with pretty good grades in 2005, but yeah.

In January of 2000, I suffered a bad case of the flu. I rarely got the flu back then and still get it only once every five years or so, so I remember. In fact, I’m not 100% sure of this but I think it was my only time being off school sick in my entire grammar school career.

In February, my outreach teacher for the visually impaired came to talk to my classmates. They had already decided they didn’t like me one bit. In fact, when the teacher asked casually what having me, a blind student, in their class evoked in them, they didn’t think of a single positive. They started saying that I was being favored by the teachers. They also resented the need to help me get around. This instilled in me the feeling that I had to make up for my blindness in some way by being extra, well, anything.

I had read a book called Het instituut (which translates to The Institution) by blind comedian Vincent Bijlo in 1998. This book is about a boy who goes to a boarding school for the blind and his teachers constantly instill in him the idea that the “sighted school” is really hard and that he’ll need to compensate for his sight loss. For all I knew, my parents and teachers at the grammar school agreed: I was an inherent burden due to my blindness unless I showed my classmates I was more independent, nicer, more hard-working and in any way better than them. Then when I tried to work hard and got good grades, my classmates decided I must be favored by the teachers.

My idea about myself as an inherent burden on the world around me due to my blindness didn’t change till I went to an international computer camp for the blind in 2002 and discovered the English-language Internet in that same summer. It never completely disappeared though.

Later in the year 2000, my classmates started openly bullying me. Again, my parents and teachers blamed me. I was too dependent, too unsociable, too much of a burden in general. I had ruined the only friendship I had developed (which in hindsight was based on pity mostly) by getting my “friends” an only average grade in a music performance in October. Though these girls didn’t actively bully me, they mostly ignored me.

I realize, looking back, that the attitude towards people with disabilities was generally very hostile back in the late 1990s and early 2000s, when I was growing up. I mean, I bullied a girl with a visual and intellectual impairment on the special needs bus to the school for the blind in the late 1990s. Though my parents disapproved of it, both they and my teachers didn’t do much to stop me. When this girl was dying of a brain tumor, my parents even openly criticized her religious parents’ hope that the girl would miraculously survive.

I can only hope that, with more children with significant disabilities being mainstreamed nowadays, that attitudes have changed.

#Blogtober20

I Was Taught to Believe…

That, if I didn’t have my parents’ support, I had no-one’s and I would never get anyone’s support. “You are socially inept,” my mother said, “and you got it from us.”

This exchange happened in late April of 2006, when I had just been kicked out of my parents’ house. Not that I still lived with them, and not that I was ever planning on doing so again, but my parents made it very clear that they would no longer support me. I don’t even mean financially, but practically and emotionally.

What had I done to deserve this? I had told them I was delaying going to university one more year. I wasn’t giving up on it. I was still going to meet their expectations of me that I become a university student, grad student, Ph.D., professor, you name it.

And then I didn’t. In the fall of 2007, while attending the university I had originally been meant to go to in 2006, I gradually fell apart and was ultimately admitted to the psychiatric hospital. Though I was discharged in 2017, I never went back to university.

Though my parents and I are still in limited contact, I know I don’t genuinely have their support. Not emotionally. I mean, I see them twice a year, talk to them on the phone about once a month and get €1000 at the end of the year to spend on new technology mostly. I don’t know whether this will remain the same when I go into long-term care (or when they find out about it). And I’m not sure whether I care. They aren’t the type to stop talking to me at funerals or the like and I don’t really need their money or birthday presents or phone chatter, though they’re nice. I won’t go no contact, but if they decide to abandon me, that’s their choice.

Because, though I was taught that without my parents, I had no-one, this isn’t true. I met my husband in the fall of 2007. You know, the fall that was supposed to be the start of my academic career and ended up being the catalyst to my getting a life of my own. My husband supported me through the psychiatric hospital years. He supports me through the years we live together. I trust that he’ll support me through the coming years when I’m in long-term care. I may be socially inept, but that doesn’t mean no-one will support me. Love me even.

This post was written for V’J.’s Weekly Challenge. V.J. challenges us to think about the untrue things we were led to believe as children or in other dysfunctional relationships.

#IWSG: Writing About Myself

Yay, it’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) to come together and share our writing journey. This past month has been better than the month of May. I wrote twice as many blog posts and have generally been feeling more motivated to write.

I still want to be more courageous and creative with my writing. I have been able to venture somewhat out of my comfort zone with a few stream of consciousness writings. I would still love to try my hand at poetry and flash fiction again, but am too insecure right now.

The optional question for this month’s #IWSG day is about incorporating aspects of yourself into your characters. Since I no longer write fiction and almost all my writings are about myself, this question may seem off.

However, when I still wrote fiction regularly, this question was very applicable. Not only did I incorporate a lot of aspects of myself into my characters, but the other way around too. Let me explain.

As regular readers of my blog might know, I have (currently undiagnosed) dissociative identity disorder (DID). This used to be known as multiple personality disorder. People with DID have at least two separate identities or personality states, each with their own unique way of perceiving and relating to the world.

DID usually first develops in early childhood as a result of prolonged trauma, but people who dissociated early on, often continue to do so during times of stress into adolescence and adulthood. For me, the time of my most serious dissociation was adolescence. This was also the time I wrote fiction the most. I incorporated a lot of aspects of myself into my characters. Often, my characters were blind or, if they weren’t, they faced some other challenge that set them apart. Most characters had difficulty making friends like myself. The main character in the story I got the farthest with, didn’t have a disability, but her mother had multiple sclerosis.

I often used writing as an escape from reality. As such, with my dissociative tendencies, some of my characters developed into alters. These are called fictives. One of them is now one of the main fronters (personalities presenting themselves to the outside world). She was in a way deliberately created. At least, the character was. I had difficulty explaining myself and my struggles to my parents and teachers, so my high school tutor allowed me to express myself through fiction. That’s how Kirsten came about. Kirsten is blind and has many of the struggles I do. Currently, we present as her when we can’t show the world that we have DID but we’re feeling very much split anyway.