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

My Medication Musings: Phenergan

It’s been a while since I last did a post talking about one of my medications. Today, I want to talk about one I’ve not used in a while: promethazine or Phenergan.

Phenergan was the first PRN medication I got prescribed while in the mental hospital. I remember clearly the state of mind I was in. I had been irritable for most of the afternoon and finally burned my hand using boiling water. This act of self-harm got the nursing staff to fetch the physician. I apparently had a smile on my face when I disclosed my having self-harmed, so he said there was nothing to laugh about. Obviously not, but I struggled to express my emotions. He offered me a PRN medication. I’d heard of Phenergan before and what I’d heard about it from autistic people, wasn’t good. However, I still agreed to take it.

Phenergan, for those not familiar with it, is a low-potency classic neuroleptic. It is currently mostly used as an antihistamine to treat allergies and such.

That evening, I was totally wiped out from the effects of the medication. I just lay on the couch or in bed feeling stoned out of my mind. That was what I needed at that point.

After that, unfortunately, I was prescribed oxazepam as my default PRN medication. Some years later though, I got prescribed Phenergan again after I’d pretty much exhausted all benzodiazepine options.

Unfortunately, by then, Phenergan did nothing. I only took it to make myself and others feel like I was doing something about my distress. At one point, my new psychiatrist once I was living with my husband, even suggested I swap it for a vitamin C pill so that I would still have the placebo effect but not the side effects. Not that I was having any side effects.

A few months later, however, I took an overdose of Phenergan that landed me in the general hospital. That was when I decided not to request a refill of the Phenergan. I by that time had lorazepam, which worked some but of course had the addictiveness as a negative. However, I’m not supposed to take PRN medications regularly anyway.

My Medication Musings: Risperdal

I started this should-have-been-series a long time ago, but never got beyond the first post. Today I’m not very inspired to write, but I want to write something anyway, so I am deciding to continue with my medication musings. The medication I’m covering today, is the first daily medication I was evver prescribed.

Risperdal, which is now sold under its generic name risperidone, is an atypical antipsychotic. It was approved by the U.S. FDA for use against irritability in autistic children in 2006. I was not a child when I was prescribed Risperdal in 2007, but I was definitely irritable and autistic.

I remember very clearly when I saw a psychiatrist I’d never met before and who may or may not have read up on my psychiatric history on July 25, 2007. She had a strong Flanders accent. My CPN had referred me to her after my staff at the independence training home called her because I had been very irritable of late. Looking back, it’s no wonder, since I was due to move out of the home and into independent living the next week. But my staff were desperate and so was I.

My CPN had suggested a sleeping medicationor tranquilizer, as I was also sleeping very poorly. Not that the psychiatrist agreed, since when I reported how many hours of sleep I got at a later phone consultation, she said that wasn’t worrysome. The psychiatrist listend to my symptoms and suggested Risperdal.

I agreed without much further questioning. That evening, I wrote a blog post saying antipsychotics in autistics are a matter of really well-informed consent. The post was a response to the general consensus at the time among vocal autistics that antipsychotics should never be considered.

Looking back, while I don’t feel that antipsychotics are completely off limits for autistics – I still take one -, I do agree with another notion from said vocal autistics: psychiatric medication is no substitute for proper support. And yet, at the time, there was no convincing my staff that I shouldn’t move into independent living, so I felt I had no other option if I wanted to have somewhat of a life worth living.

And yet, I was scared. When, after two days, I started experiencing palpitations, I was extremely anxious. It happened on a Friday night when my staff were already gone. Don’t ask me how I got through that night. The next morning, I rang the out-of-hours GP, who recommended I stop taking the medication for a few days and consult my psychiatrist on Monday. Said psychiatrist didn’t believe that this could be a Risperdal side effect or I’d have experienced the palpitations right from the start. So back I was on Risperdal.

I was on a low dose of 0.5mg twice a day. My psychiatrist was in the training home’s city, so when I moved the next week, I had no psychiatrist nearby. My GP ended up prescribing my medication. When I complained to both the training home city psychiatrist and my new GP about continuing palpitations, both dismissed me. The psychiatrist even suggested I up my dose. I refused.

Because of the abrupt change in my living situation soon after starting Risperdal, I had no idea whether it was working. I was still experiencing a lot of meltdowns.

After two months, I took myself off of the medication. I more or less informed my GP, because she was really against me going off of it. I probably lowered my dose way too quickly, going from 1mg a day to 0.5mg for a week and then stopping altogether.

We will never be sure whether Risperdal worked for me, as I never went back on it. However, three weeks after stopping the medication, I started to spiral down into crisis and had to be hospitalized four days later. The crisis service psychiatrist didn’t say a thing about me having discontinued Risperdal.

An interesting thing I need to note, is the fact that Risperdal is notorious for increased appetite and weight gain. However, I experienced the opposite if anything. This could’ve been due to stress though.

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.

Validating Jane?

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

Working On Us Prompt: Suicide and Suicidal Thoughts

I have lots of things I want to write about, and yet all I do is sit behind my computer and try to figure out which feed reader would be best (or least bad) on my Windows PC. I’ve yet to make a final decision, but I’m frustrated with it for now.

I’m joining in with Beckie’s Working On Us Prompt again. This time, the topic of discussion is suicidal ideation and suicide attempts.

As regular readers of my blog know, I do experience suicidal ideation on a regular basis. I have in fact lived with re-occurring suicidal ideation ever since the age of seven or so. My most severe suicidal break however was in 2007, when I was 21. Ironically, my parents thought that, since I had had suicidal thoughts on and off ever since age seven, I must not be serious and it all must just be “for attention”. Well, let me be very clear on this: suicidal thoughts are no fun and, if they ever happen “for attention”, there probably is a very good reason the sufferer is seeking attention.

I had never attempted suicide when I had my break in 2007. This break too involved “just” threats. However, it doesn’t mean I wasn’t genuinely struggling. I genuinely thought death was my only option. Same when, in 2002, I wrote a goodbye letter but had no idea how to go about actually taking the final step. People commonly say that, if you truly want to end it all, you will and, if a suicide attempt fails, it must not have been serious. That’s not necessarily true. People die from impulsive suicide attempts and people who’ve tried to kill themselves many times and are adamant they want to die, may still be alive.

In 2007, I was hospitalized, because my suicidal ideation was so serious that I needed help for it. That is, because I was suicidal due to be overwhelmed living independently and going to university, it helpd already to be taken out of the situation. That doesn’t mean my suicidal thoughts were gone immediately. That took at least three months and they’ve returned frequently since.

I did not actually get much help overcoming my suicidal thoughts. When I was on the locked unit, I had no therapy and no medication other than PRN oxazepam. I started therapy at the resocialization unit, but it was mostly just supportive.
In 2017, after my discharge from the psychiatric hospital, I made two suicide attempts by overdosing on medication. I am hesitant to call them suicide attempts, because both were impulsive and I’m not sure my intent was to die. I was most definitely depressed though. My suicide attempts were “for attention”, yes, but I had a very valid reason to seek attention.

Losing Myself and Finding Myself (Reena’s Exploration Challenge #96)

I remember when and where I lost myself. My old self, that is. It was November 2, 2007 at 8:01PM when I stepped onto the bus at Balustrade bus stop in Apeldoorn. I had decided this was it.

I phoned my old support coordinator at the training home. I’d just been told to leave the home’s premises, because according to the on duty staff, I was making them take unwarranted responsibility for me. I had come there in distress and a housemate had offered for me to spend the night with her, so that we had time to find me a new place to stay in the morning.

I wasn’t homeless. That is, I had a roof over my head. In the Netherlands, the word that translates to “homeless” also refers to people who are wasting away in their residence. And I was.

At 8:01PM November 2, I phoned my old support coordinator to tell her I was going to kill myself. I was on the bus and the bus driver and fellow passengers heard me. They called the police and, after a long wait at the police station, I was admitted to the psychiatric hospital in the middle of the night.

At that point, my old self went away. I lost the self that went to college, had plans for working and lived independently.

I’m still not 100% sure who will replace her. When and where I’ll find myself. My new self, that is. I know my old self is gone. Even though I live semi-independently now, I do not have anything close to a “normal” life, whatever that may be. But that’s okay. I know I will ultimately find a new eqwuilibrium, when I’m in a living facility that suits me.

In September of 2006, I wrote a post in my online diary about the two different images I had of myself. One was “white”. This image represented a “normal” life. Living independently, going to university, finding a job, marrying, getting children and whatnot. The other image, the “black” one, represented my need for support. It wasn’t that I needed 24-hour care, but that I needed more than just the once-a-week visit from a support worker to read me my mail that’s normal for people who are just blind.

By April of 2007, I knew the “black” image was coming true, but I was seeing the colors in it. I eventually did live independently and go to college, but I would get sixteen hours of home support a week.

And then that image too died, on November 2. It was hard. I grieved. But I didn’t give up. Gradually, I started to see how colorful a life I can have if I accept care.

The care facilities I’m looking at moving into, couldn’t be closer to the “black” image of myself. They are 24-hour intensive support facilities. Yet I don’t see that life as bad. I see it was exactly as colorful and rich as, or even more so than the “normal” life I envisioned for myself.

I am joining in with Reena’s Exploration Challenge #96.

My Big Burn-Out #TakeTheMaskOff

Trigger warning: suicide.

I so badly wanted to finish the #TakeTheMaskOff series on my other blog, but each time a topic comes up, I feel like I already covered that there. I probably did, but then again, I do want to share. After AutisticZebra posted the story of her big burn-out, I’m going to do the same. For those who know me in real life or through my other blog, this is probably old news, but well.

The year 2007 was an extremely eventful year. Three days in and I was given an ultimatum at the independence training home for the disabled I lived at at the time: another major meltdown and I’d be kicked out. The staff had already referred me to the local mental health agency for what they thought was autism, but they just wanted confirmation that they were doing the right thing. They had no intention of actually changing their support style, because they were allegedly already supporting me based on the assumption that I’m autistic.

On February 10, I had said major meltdown. I had had a fight with my parents over them participating in my autism diagnosis the night before and had been incredibly irritable all day. My least favoirte support worker was on shift, a pretty uncaring woman who kept dismissing my panicky response. So I had a meltdown. And several days later, after the staff had conferred, got told that I would be kicked out. The date for my eviction was set for June 1, which was fair enough given that they usually need to give two months’ notice.

Several weeks later, I was finally, at the age of 20, diagnosed with autism. I was relieved. I could start counseling with a very supportive community psychiatric nurse, who managed to convince the staff at the training home to give me more time to find new housing.

By July 3, I was given the keys to my new apartment in Nijmegen, the city where I’d start college. I moved out of the independence training home on August 1.

The three months that followed are a blur to me. I had almost daily meltdowns, in which I ran off or injured myself. The police were called repeatedly, but I “wasn’t crazy enough” to be admitted to a psychiatric hospital.

That is, until one day I was. On Friday, November 2, I had been wandering all day through my parents’ city, where the independence training home was located as well. In the late morning, I had been kicked off the train station for melting down there on my way to the train back to Nijmegen. I couldn’t count on my parents to support me, so desperately, I went to the training home. I wasn’t supported there by the staff either, so wandered through the city for the entirety of the afternoon and part of the evening. A training home former fellow client then offered me to sleep at her apartment for the night, so that we could find a solution in the morning. That wasn’t acceptable to the tstaff, so I was required to leave. I left the training home, took the first bus to the train station and phoned my support worker in Nijmegen to let her know I was going to commit suicide by jumping in front of a train. I probably half realized that this was going to be picked up, but still tried to convince the fellow passengers on the bus not to clal the police. I remember a woman sitting next to me trying to comfort me, saying that help was on its way. At the station, I was picked up by the police, who took me to the police station and rang the crisis service in that city. This was when I finally got admitted to a mental hospital.

Looking back, this is a clear example of autistic burn-out. I was reminded of this once again by the Center for Consultation and Expertise consultant who came to visit me this morning. I was also told by that same consultant that my former psychologist’s twisting the truth to find a reason to kick me out of the hospital – by among other things taking away my autism diagnosis -, wasn’t about me. It was more likely about the budget cuts to inpatient mental health treatment.

It Was the Summer of 2007

Today, for the first time in a long while, I’m linking up with Finish the Sentence Friday (yes, on a Sunday, but I wasn’t inspired on Friday). The prompt this week is “It was the summer of…”.

Last Wednesday marks eleven years since I started living independently in the city of Nijmegen, where I’d go to university. It was a Wednesday back then too. It was the summer of 2007. We’d had a heatwave in July, but as far as I remember, the weather wasn’t good in August.

On August 1, 2007, my parents drove the 40’ish miles from the independence training home in the city of Apeldoorn to Nijmegen with me. The car was packed full of my belongings. While the training home apartments were furnished, I still had some ofmy own furniture. Besides, my new apartment was only partly furnished.

I didn’t feel much on my way to Nijmegen. I was drugged up with the antipsychotic a psychiatrist had prescribed just a week before. I still find it rather weird that I’d started a new medication just a week before a majr transition, because how would we know whether it was working then?

When my parents had put together my new furniture, we went to the nearby Chinese takeaway. I had learned to cook in the independence training home, but I don’t think my parents trusted me enough to do it for them.

After finishing our food and putting the leftovers in the fridge for the next day, I crashed. I cried. I still find it painful to remember, as I was always taught not to cry. My mother saw me cry, whcih was terribly embarrassing. She didn’t comfort me. I was 21-years-old, after all, and no longer my parents’ responsibility.