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.

Summer Memories: Camping at Vlieland

A lot of thoughts have been floating through my mind that I’ve wanted to blog about, but I couldn’t motivate myself to actually write. I’m not even sure what about these thoughts I wanted to write, so instead, I looked up a writing prompt again. Over at Mama’s Losin’ It, one of the prompts for this week is to share your favorite summer memory. Here goes.

In the early 1990s, my parents would take my sister and me camping at a campsite called Stortemelk at Vlieland, one of the Dutch Wadden Islands. We would send our baggage there via a now no longer existent transportation company called Van Gend & Loos and ourselves travel there by train and ferry. Our parents didn’t have a car at the time. This made the journey all the more interesting, because we met lovely people on the train.

We would often meet the same people at the campsite, but also we’d make new friends each year. In 1993, when I was seven, I remember we collected shells and bird feathers and such and put them on exhibit near our tent.

In 1994, we went again and this year was the year we built a number of treehouses. I was eight at the time and my sister was six. I still had a little vision, so I was able to join in with the rough-and-tumble play of the other kids. I loved this vacation most.

After that year, we stopped going to Vlieland for several years. The reason was our move from Rotterdam to Apeldoorn, so our parents wanted to use the summers to get to know their new city. When we returned to Vlieland in 1998, it was a lot less fun. I was twelve by this time and too old for treehouses. I was also too blind. I could no longer find my way to the campsite store or anywhere on my own.

The last time we went to Vlieland was in 1999. I have very few memories of that trip. I liked going again but probably just because I was used to the routine. It was no longer fun.

Mama’s Losin’ It

A Beautiful Memory: Clowns

It looks like, even though I’m still depressed, I’m getting a little bit of my writing mojo back. I have at least been commenting more on other people’s posts and feel like I want to write again. I was inspired to write this post by a question over at Pointless Overthinking. The question was about your most beautiful memory from last year. In 2018, my most beautiful memory was of saying goodbye at my old day activities. I already posted about that when it actually happened though. For this reason, I’m choosing another memory to share.

On November 23, 2017, my old day activities organized a “day out” for all clients. The reason it was called that was because they get money to take each client on an outing each year. This hadn’t happened in years though and, with many clients being profoundly and multiply disabled, it would’ve been hard. Instead of going out with those who could do this, the staff chose to have a “day in”. They organized for two clowns to visit the center.

I attended the group for profoundly and multiply disabled people at the time. I am not profoundly disabled, but I most enjoyed the sensory activities at that group. The clowns visited us and started interacting with the clients. None of the other clients can talk, but they thoroughly enjoyed it. So did I.

In addition to the clowns visiting, the staff had organized for a snack and fries delivery truck to come by. The clients at my group couldn’t make it clear what they wanted from the truck, so at first I too was just given a particular snack. When I discovered you were actually allowed to order your own snacks and fries, and as much as you wanted, I joined the people at the more able industrial group to fetch myself snacks. It was a ton of fun.

I was reminded of this day a few weeks ago, when a staff’s ddaughter visited us practising as a clown. She was in the process of auditioning to become a hospital clown and wanted some practice. She was really good. Unfortunately, she didn’t pass the auditions though.

Love: How I Met My Husband #AtoZChallenge

Welcome to the #AtoZChallenge day 12. Today I am going to share a positive story, because I am going to write about love. I have known my husband, Jeroen, for 11 1/2 years and love him to pieces. I want to share how we met in today’s post.

In September of 2007, I was living on my own in Nijmegen. I struggled a lot and felt extremely lonely. I at the time frequented a message board, where I posted that I felt alone. Jeroen was on this forum too. He had been wanting to expand his social circle, so he had decided to get to know some fellow forum members better. He read my blog, which I’d kept on WordPress since early 2007. From that, he decided he wanted to meet me. He sent me a PM asking to have a coffee or tea somewhere in Nijmegen. I accepted.

At first, I was unsure whether I’d be safe. What if Jeroen wasn’t the 18-year-old guy he claimed to be? To be honest, I didn’t know much about him from the forum even though he was an active member. He offered to meet me at the forum meetup in Utrecht, but I didn’t have the spoons to travel there, so I agreed to see him at the bus stop closest to university that the bus I knew drove by.

On our first “date”, we were both stressed. I fell off a step and dropped my coffee. When we sat down on a bench, he asked what type of music I liked. I answered “world music”, as I mostly listened to Latin American music.

After our first time meeting, he PM’ d me to tell me he had mixed feelings about it. So did I. But a few weeks later, he again PM’d me to ask whether we could meet again and I invited him to my apartment. That was probably a bit weird, but I knew no other place in Nijmegen.

When we had just planned our fourth “date”, I was admitted to the psychiatric hospital. I didn’t have his phone number, nor did I have Internet access. I gave my support worker my login details for the message board and asked her to contact Jeroen.

A few weeks later, my father called asking whether he could give Jeroen my phone number. I agreed. Jeroen had found my father’s E-mail address through the whois of his website (that he doesn’t do a thing with). I”m so glad he was (and still is) such a tech savvy person and didn’t give up.

It took us six more months from that point on to agree that we would be calling our involvement a romantic relationship. I am so glad I eventually agreed to love him back, as he’d been the first to say he was in love with me. We will be celebrating our 11-year anniversary of being a couple next month. We got married on the day we knew each other exactly four years on September 19, 2011.

Dealing with Some High School Memories

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo