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

Developing My Fighting Spirit

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

The Greatest Moment of My Life

Today’s Question of the Day on Pointless overthinking is about the greatest moment of our life so far. I already briefly shared it in the comments, but I want to expand on my answer.

The greatest moment of my life so far is the moment my now husband proposed to me. This was June 4, 2010. I was 23-years-old and struggling with the aftermath of a traumatic childhood unfolding itself to me. My dissociative symptoms had becoem too unbearable to hide and I was slowly beginning to trust my staff at the psychiatric hospital resocialization unit with my feelings. That day, my named nurse invited my then still boyfriend into a room with me and her to explain some of my symptoms.

After that, my boyfriend took me to the place we had first met each other on September 19, 2007. It was a bus stop near the university’s dentistry department that I’d gotten off the bus from my home that day in 2007. Now, they were working on the road there, so we couldn’t sit at the bus stop. Instead, we sat down in the grass and my boyfriend proposed to me. I at first thought he was joking so I replied: “So you think that’s cool then?” He said yes and went on to propose we get married on September 19, 2011. “Mind getting married on a Monday?”

We chose our wedding date based on the fact that it was exactly four years since we first met. Four, for us, is a code word for kissing, because of a kind of wordplay in Dutch.

A week later, my boyfriend asked whether I’d informed my parents yet that we were getting married. I hadn’t, still thinking he had been joking. As such, I never said an official “Yes” to his proposal. That must’ve felt terribly hurtful to him. I told my parents, sister and grandma that evening.

My family’s responses were not overly supportive. My sister said we were a bit young (I would be 25 and my husband 22). My parents said we should go live together first. This is not a requirement for married couples anymore here in the Netherlands. We wanted to marry each other for no toehr reason than to prove our love. My parents felt, as did some of my professionals, including the psychologist who kicked me out of the hospital to live with my husband, that love didn’t mean much if you don’t live together as a couple. Fine by me, you’re entitled to your opinion, but we’re entitled to ours.

PoCoLo