My Shed

One of Mama Kat’s Writer’s Workshop prompts this week is to write about your very first apartment. I am going to cheat a little and write about the first apartment I rented rather than the very first apartment I lived in. The first apartment I rented was my student housing apartment, which I called “my shed”. This sounds affectionate in English. In Dutch, not so. “My cage”, though not as correct a translation, more correctly captures the feeling I had about this apartment.

When I got on the housing list in Nijmegen for the academic year starting 2007, the student counselor made sure I got a letter getting me to a priority place on the list because of my disabilities. This meant I was allowed to provide a preference for which student housing complex I wanted to live in. I had to list my top three. Based on the little information the housing association provided and what my support staff at the independence training home I lived in before moving to Nijmegen knew, my number one choice became the complex “my shed” was part of. My reasons were that its apartments reserved for disabled students were on the ground floor and the neighborhood was supposedly quiet.

Indeed, my apartment was on the ground floor, right beside the main entrance to the building. I didn’t have to enter the complex to get to my apartment.

It was a one-bedroom apartment. When you entered through the door, you were in the long, narrow living room and kitchen. Then you went through to something like a landing, with the bathroom on your right hand. Then, you’d enter another long, narrow room, which was the bedroom. The apartment altogether was 35m².

My apartment had just a few, very dim lights in the living room and one equally dim light in the bedroom. I guess my parents thought that I didn’t need much light since I was blind anyway. I had my desk, the one I currently still use to sit on whilst typing this post, in the living room. Other than that, I just had two kitchen chairs and a folding table to eat at. I did have one recliner that I’d gotten at a thrift store and a few rather tacky pillows. I had never thought of decorating my place at all. In fact, this past holiday season is the first time I’ve ever decorated my room and that’s quite a milestone.

Like I said, my apartment was very narrow and long. Its windows were on the short end of the apartment. Due to this and the lack of lighting, the apartment looked rather dark and gloomy. If I wasn’t depressed already, I’d become depressed from the lack of light in my shed.

The place quickly got rather filthy from my poor cleaning habits. I did try, but due to the combination of my disabilities, I just couldn’t keep the place properly cleaned. Looking back, I am so grateful my now husband didn’t go on a run as fast and as far as he could when I invited him into the shed on our second get-together.

I only actually lived in the shed for three months before landing in the psychiatric hospital. It is by far the worst place, in terms of interior, I’ve ever lived in.

Mama’s Losin’ It

Reclaiming November

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

The Best Decision of My Life

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

Loneliness Comes From Within: Some Reflections

I am still struggling badly. I have been having flashbacks of the time when I lived on my own in 2007. When I told my husband this tonight, he asked whether any traumatic events happened there. Not really in the classic sense of the word, but I did suffer intensely. The “cage”, as I called my apartment, was a filthy, dark and gloomy place. Neither I nor anyone else had ever thought of making it into a home.

I was intensely lonely during the three months that I lived in that place. Nonetheless, people did reach out to me. I was in touch with several of my fellow students in the linguistics program at university, one of whom lived in my housing complex too.

When I mentioned this, my husband said that loneliness rarely comes from the environment. It wasn’t that no-one cared, as had been the case during most of my high school years. In fact, multiple people reached out to me, but I was closed off to contact with others. I was so convinced that I was unloveable that I didn’t attempt to form genuine bonds with people.

Sadly, it’s still mostly this way. Just a few days back, I was telling my husband that all caring staff eventually leave, referring to the idea I’ve gotten in my head that my assigned staff is not coming back. Indeed, a number of staff have left in the past or told me they had to distance themselves from me due to my behavior. However, a number have stayed too. In particular, my support coordinator from when I lived with my husband, stuck by me till the end.

Of course, staff/client relations are different from friendships. Staff might leave for reasons that have nothing to do with me. Others will come in their place, sad as it may be. Friends though will not necessarily be replaced. And that’s where it hurts more: I feel intensely incompetent at forming friendships.

I mean, though I did have contact with fellow students and people in my housing complex while living on my own, I mostly sucked up their energy. I feel intensely sad about this. I still feel like I’m not able to make friends ever at all. However, there is hope. Now that I (hopefully) am in a stable living situation, I may be able to build on some genuine friendships after all. I already consider some of my fellow clients my friends. I don’t need to rely on them for support, as I (hopefully) have my staff for that. That should be a relief.

My Relationship With the Night

I have a really complicated relationship with the night. On the one end, I’m a true night owl and can enjoy sitting up late reading a book or browsing the Internet. Before the Internet, I used to listen to a talk show on Dutch public radio called “Night shift” on weekend nights between 2AM and 6AM. The show might’ve aired on week nights too, but I wouldn’t allow myself to stay up past 1AM then. (Yes, I wouldn’t allow myself. My parents didn’t set a bedtime for me past age ten or so.) In the show, people called in to ask for advice or opinions on sometimes rather mundane topics, such as the difference between fruit and vegetables.

One time, a woman called in to ask for opinions on her eye condition. She literally had a hole in her eye, she explained, which she could see when there was static on TV. The hole, however, also meant she was unable to see facial expressions, which limited her card-playing ability. She assumed that and wanted opinions on whether she could have gotten the hole because of fifteen years of almost daily crying. I don’t know whether she ever received a satisfactory answer, but I do know that story brought chills to my spine.

As I said, I’m a true night owl. Others might call me an insomniac. In fact, I’m pretty sure my relationship with sleep and the night was rather unhealthy for most of my life. As a young child even, I used to stay up late at night worrying about things I’d seen in the news, things I’d heard or experienced during the day, etc. My parents hardly comforted me. In fact, they pretty much left me to my own resources. That’s one reason they didn’t set a bedtime for me.

When I lived on my own in 2007, I had an even worse relationship with the night. I developed something akin to OCD that mostly showed up at night. I had to check each night whether my alarm was on, door locked, windows open, heating off, electronics unplugged and I’m pretty sure I forgot something. I’d spend hours going through my apartment checking each several dozens of times.

During the last week of my living on my own, I’d often leave my apartment in the dark to go outside and wander the streets. I still get flashbacks of this darkness now.

Once in the psych hospital, the first medication I was put on, was temazepam, a sleeping pill. That worked for all of two weeks. Then I got put on Nozinan, a strong sedative, which however kept me drowsy for most of the day too. Then followed nitrazepam and diazepam until I finally decided I’d rather have insomnia without meds than with meds.

I eventually did have to go on meds after all, but these were daily meds. I currently don’t experience severe insomnia, but I do experience disrupted, restless sleep and nightmares. I did back in 2007 too, but, though I did mention it when admitted to the hospital, it never got paid attention to. Thankfully, my latest addition to my psych med combo, topiramate, does help with this.

This post was written for today’s Tourmaline’s Halloween Challenge prompt: night.

Hope and Faith

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

How Far I’ve Come #SoCS

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday is “Where”. Linda, the host, is probably referring to the 9/11 terrorist attacks and where we all were at the time when she says that she has a feeling the subject of many posts will be the same. I, though, think I already shared where I was during the 9/11 attacks. I was in my room, writing in my diary about being used for a reality TV show. I mean, in the taxi home from school, I was secretly filmed while talking to the taxi driver and then was asked to consent later to it being shown on TV. I obviously refused. I was only fifteen. My mother said they should’ve picked someone at least five years older than me.

I don’t want to revisit that day though. Instead, I want to reflect on where I came from and how far I’ve come in those twenty years since the attacks.

On 9/11, I was in the ninth grade at grammar school or a classics-oriented high level high school in my city. I was being mainstreamed despite being multiply-disabled, because my parents believed I was just blind and oh so intelligent (which they considered a disability too in some ways, but it really isn’t).

Two months after the attacks, on November 2, 2001, I experienced a major mental crisis, which was of course brushed off by my parents. Six years later exactly, I did land in the hospital when experiencing another crisis.

I spent 9 1/2 years in the psychiatric system, 2 1/2 years living with my husband because the psychologist at my last psych unit felt I was misusing care and should be living independently. Then I went into long-term care. It’ll have been two years on the 23rd.

In a sense, I’ve only deteriorated in those twenty years. On 9/11, I proudly told that taxi driver how I was doing being mainstreamed as a blind person in a high level high school. Twenty years on, I live in a facility with people with severe to profound intellectual disabilities. Even then, I’m the one who needs the most care, getting one-on-one most of the time.

In another sense though, I’ve come a long way. I’ve definitely become more like me, the real me, who doesn’t care what her parents or teachers or support staff for that matter think she’s supposed to be like.

Riding the Train

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.


This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

Knowing God When I’m at a Fork in the Road

Yesterday, I finished the First steps with Jesus Bible plan on YouVersion and I immediately wanted to start a new Bible reading plan. I looked through the most recently added plans and found one called: Hey God, Can We Talk? I’m at a Fork in the Road. I clicked on it and apparently loved its description, although I can’t remember it right now. So I decided to start the plan.

The plan walks us through Jacob’s story. For the first day, we were asked to read the verses in Genesis 28 where Jacob leaves for Bethel after Esau plans to kill him. I had no idea about this. I mean, I thought the idea that Jacob would receive Isaac’s blessing rather than Esau had been mutually agreed upon. That’s how my father explained it once when we ate lentils for dinner: that Esau voluntarily swapped his firstborn’s right for a bowl of lentils. He then personalized the story to my younger sister and me. I probably thought to myself that my sister could keep her yucky lentils and eat mine as well.

Anyway, apparently not. Rebekah had urged Jacob to escape the family home and go to her brother. This, the plan author compares to us leaving home to go off to college. Except, she says, Jacob didn’t have his family to support him should catastrophe strike. This hit home to me.

When I lived independently in Nijmegen in 2007, I didn’t have my parents’ support either. That is, when I wasn’t coping, they made it very clear that I wasn’t to rely on them. I had my community support staff, of course, but they too had their conditions for supporting me.

At one point while resting in Bethel, Jacob has a very important dream. In it, the Lord speaks to him and promises him the land on which he lay. Okay, fine by me. I don’t need land. but I do need comfort.

The plan then goes on to highlight verse 16: “When Jacob awoke from his sleep, he thought, ‘Surely the Lord is in this place, and I was not aware of it.'” (Genesis 28:16 NIV)

This, then, was comforting but also slightly scary to Jacob. This is so relatable! In 2007, I had no idea there was even a God, let alone that He cares about my life. Now I do know, but it’s sometimes scary too. Maybe because I am not used, with the exception of my husband (and I doubt that all the time), to being loved unconditionally.

Of course, Jacob’s story takes place long before Christ. However, the God of the Old Testament, unlike what some atheists told me when I first learned about religion, isn’t a horrible dictator. He is still the same and He was with Jacob. I love this. Do you, too?

Linking up with Grace and Truth.