A Trip to Berlin

Fandango has started a new challenge for the month of August and the prompt word for today is Trip. I’m going to write about a train trip my parents, sister and I took to Berlin in 2002.

At the time, you had this bargain called “schönes Wochenende” in Germany, which meant that for just €28, four people could travel all over Germany by train on a Saturday or Sunday. The only catch was that you had to take local railroads.

My parents, sister and I at the time lived in Apeldoorn, Netherlands, which isn’t too far from the German border. So we drove to Bad Bentheim to go on the train. The first train we took, drove us to Osnabrück. Then we took three more trains until we finally arrived at Berlin Hauptbahnhof. The last train we took, I remember, had Frankfurt an der Oder as its final destination. I found that fascinating.

I at the time had train routes as one of my autistic special interests. It was totally awesome learning all about the German local railroads.

The holiday in Berlin itself wasn’t a good experience. I had a lot of meltdowns and was pretty confused. I did like visiting a street called Straße des 17. Juni, because that year on 17 June I had first opened up about my distress that I’d suffered with for years. The street was named after a protest in east Berlin in 1953.

This was, actually, the last trip I took with my parents. The next year, I went to computer camp in Switzerland and the year after that, to blindness skills camp at the country’s training center for blind people. The year after that, I graduated from high school.

I feel pretty sad that I don’t have many memories about the trip to Berlin and the ones I do have, aren’t good. I guess trips rarely were enjoyable for me. That’s probably why I haven’t been on vacation with my husband in six years.

A College Memory

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It

A Twelfth Grade Memory

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It

Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?

When I Was Five

This week it’s 29 years ago that I spent a week in the children’s hospital with a collapsed trachea. It closed up on the night of April 28, 1991, the night after we’d celebrated my mother’s birthday, two months before my own fifth birthday. I was unquiet all night or so I’m told, getting up to go to the bathroom a dozen times. Eventually, my parents discovered what was going on and I was rushed to the hospital.

Thankfully, my trachea opened again within a day or two. I don’t know whether I had to be on a ventilator. In fact, I remember very little of these first few days. Then, on May 3, I had surgery to take out my tonsils and adenoids. That surgery had been scheduled for May 21 at another hospital anyway, but the children’s hospital could fit me in earlier now that I was there anyway.

After surgery, I had to stay in the hospital for another few days because I had a breathing tube inserted. That is, I’m not 100% sure the breathing tube was before or after surgery. I remember trying to talk through my tube, which was pretty much impossible.

This was probably also the time in hospital that my parents brought me their supermarket’s brand of peanut butter to eat, as I wouldn’t eat the premium brand the hospital had. Can you tell I was spoiled or autistic or both?

Finally, I got home on May 7. I was already a calendar freak, so I actually remember this without having been told.

As I write this, my inner five-year-old is trying to speak up, but she can’t. I don’t know whether this hospital stay was particularly traumatic for me, even though the going to the bathroom compulsively became a habit of mine in my teens. I may have made Lisel (that’s my inner five-year-old) up, because after all I remember this particular hospital stay so well.

I do think falling ill in early 1992, was more of an adverse childhood experience for Lisel (or me, if you think Lisel is made up). I remember I had some form of the flu, but in my own memory, it wasn’t entirely medically explained. My parents will probably say I’m trying to find clues that aren’t there so am making them up. I mean, they never talked about this experience when, in my teens, I was trying to remember when my negative mood started. They claim, as did I at the time, that it started when I was seven and having to learn Braille. In other words, I was going blind and I knew it but refused to accept it, so was becoming defiant to show a middle finger to the world. It’s easy to say it doesn’t matter. In a way, it doesn’t, but too often, I feel my parents are hiding the truth from me as a way of denying that I had significant mental health issues before the all-important age of seven. I mean, if my problems started at seven, I cannot possibly be autistic or have a dissociative disorder or anything originating in early childhood, right? Besides, I could have been old enough to be manipulative.

Am I being manipulative indeed? Or am I an early childhood trauma survivor? I don’t know and I’m not sure Lisel knows the answer.

Joining in with V.J.’s Weekly Challenge.

A Day I Will Never Forget

I’m a day late with this topic in 7 Days 7 Posts. The Tuesday topic didn’t appeal to me and besides, I was really anxious then. Yesterday I had a lot of meetings to discusss my anxiety and the reasons for it. I made it clear that I really needed some more care and particularly more consistency and clarity in my day. I went to bed at 8:15PM, having taken an Ativan to help me sleep.

Yesterday’s topic was to describe a day you’ll never forget. I already described how I met my husband sometime during the #AtoZChallenge last April. Another day I will never forget, though for less pleasant reasons, is the day I landed in crisis in 2007. I probably described that day a few times before already, but right now I can’t find where. If you’ve read this before, I apologize.

On November 2, 2007, I was in my parents’ city to get a landline phone I wanted to use in my student apartment. The reason I wanted a landline was the fact that I was scared of mobile phone radiation causing Alzheimer’s. It’s weird that now I use my iPhone like all the time and don’t worry about it much.

I had come to my parents’ the previous evening and was planning on going back home to Nijmegen that Friday afternoon. However, on the train station, I had a meltdown. The police were called and removed me from the station.

I went to the independence training home where I used to live until that summer. I wasn’t really sure what I wanted, but I needed to look up some phone number on my laptop. I knew I shouldn’t go back to my parents’, as they’d probably be angry with me.

After having called whoever I needed to call, I wandered around the training home neighborhood for some hours, not sure what to do. At one point, a fellow client at the training home realized I was struggling, so she offered me to come into her apartment and stay for the night, so that we could find a more long-term solution the following day. However, the staff came to her and told me to leave. They weren’t going to take responsibility for me.

At that point, I had another meltdown. I walked to the nearby bus stop, catching the 8:01PM bus to the train station. In my memory, it was still light outside, even though that’s not possible at such a time in early November. I called my support coordinator to let her know I was going to commit suicide. The bus driver overheard me and called the police.

I was terribly scared, because the police had kicked me off the train station that afternoon. However, I willingly went with them to the police station. They called someone called a community physician, who is in charge of triaging people not known to that city’s mental health agency. He was a really blunt man, telling me that I made people feel responsible for me in a way as if I was just seeking attention. He even used a kind of threatening voice when he said he was going to call the crisis service. I didn’t mind.

The crisis service psychiatrist and CPN came out to the police station. After assessing me, they asked me what I wanted. To this day, I’m not sure whether I really didn’t know what I wanted or felt too embarrassed to ask for help. After all, when talking to the behavior specialist for my current care facility yesterday, I also said I didn’t know what I needed even though I did. Anyway, the psychiatrist proposed that I be admitted to the mental hospital and I agreed.

The Third Day of Christmas

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband Jeroen six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

Jeroen had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.

My Encounters With the Police

When I wrote my Share Your World post last Monday, I said I would write more about my encounters with the police. Now that I keep switching between a lot of seemingly meaningful activities and not sticking to one long enough to actually be useful, I thought I’d write this post.

My first encounters with the police, in 2000 or 2001, were for the “crime” of being or appearing lost. I would often go to the grocery store on my own to get candy, even though I didn’t really know my way there. That is, I had been taught, but being that I not only am blind but have the worst sense of direction, I couldn’t seem to get it right. So I often got lost and then people would see me wander aimlessly, sometimes crying in frustration, and they’d call the police. My parents thought the police were stupid.

One time, in 2004, the police threatened to arrest me “for support” if I didn’t go in their van with them. This was my worst encounter with the police, because not only was their use of force excessive (they physically pushed me into the van), but I hadn’t actually been lost.

Once I’d moved into independent living in Nijmegen in 2007, I got involved with the police several times for wandering. They’d take me to the police station, sometimes calling my support staff and other times the mental health crisis service. I was deemed “not crazy enough” for the crisis service to even assess me.

I have probably shared the story of my mental crisis in November of 2007 before. In fact, I know I have, maybe just not on this blog. This involved me threatening suicide while riding a bus. The police were called by the driver and took me to the police station. What I may not have shared, is that I got removed from the train station by the police earlier that day, for the reason that I appeared (and was) confused.

Now that I live with my husband, I sometimes fear police involvement when I wander off. However, this village is so tiny there isn’t any police on the streets anywhere.

Overall, my experiences with the police have been okay, other than the time in 2004 I was threatened with arrest and the time I was removed from the train station. The police in my parents’ city had a good amount of information on me on file, which I’m not even sure they’re allowed to anymore due to GDPR. Now, however, many mentally ill people carry a “crisis card” in their purses with basic information about them, their diagnosis, emergency contacts and what first responders should and shouldn’t do. I have yet to get myself such a crisis card. I will when I’m in supported housing.

A Month Without a Laptop

I am writing this post on my new computer. I love it. Definitely a PC is much more user-friendly than a Mac if you are not too tech-savvy. My mother-in-law would say the opposite, but oh well. I’m just glad I got to sell her my Macbook.

Today, when I read on another blog about someone having to do without a laptop for a few days, I was reminded of the month I spent without a computer. Of course, people older than me will remember the years they spent without a computer and, in fact, I didn’t get my first computer till I was eleven and didn’t have access to the Internet till nearly sixteen. I quickly became addicted though, so when my laptop broke down in 2009, I was lost.

I had at the time just transferred from the locked psych unit to the open resocialization unit. The locked unit didn’t have a patient computer. This got me to consider getting a wireless cellphone-like modem for my laptop. However, at the time, I was too scared of getting Alzheimer’s from electromagnetic radiation. This meant that, in the early months of my hospitalization, before I was allowed on leave, I didn’t have access to the Internet. I had a computer though.

The resocialization unit did have a patient computer that was connected to the Internet. It didn’t have a screen reader on it, of course, but I just removed the network cable from the computer and plugged it into my laptop. And then one day my laptop crashed. This was, obviously, before accessible smartphones. In fact, though I had a phone that could connect to the Internet, I could only use it to make phone calls.

I was frustrated, but not as frustrated as I’d be now if I lost access to the Internet. For an entire month, I typed up my diary in Braille and listened to audio books and magazines on my digital talking book player. I do still have my Braille typerwriter and my digital talking book player, but both are pretty much useless.

Since having no computer for an entire month, I usually make sure I have at least two devices that connect to the Internet. Currently these are my PC and my iPhone. My old PC could probably be revived if need be too.

I also did finally get myself a wireless modem. I just threw it away yesterday, as I’ve not paid f or the data that goes with it in years.

I guess I could technically (no pun intended) deal without going online for a while now. However, I am always very happy to discover that a potential new living faciltiy has WiFi. I guess some people take this for granted, but the psych hospital didn’t have WiFi till 2015 and even then it was very limited.

The Summer After High School

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.