How I Cope With Loneliness

Today in her Sunday Poser, Sadje asks us about loneliness. She describes the experience as the feeling she gets when her family or friends can’t celebrate something important (such as the seasonal holidays) with her. This is one aspect of loneliness indeed. I feel lonely, left out even, knowing that my sister will be celebrating St. Nicholas with my parents next week and I haven’t been invited. Okay, she has a child for whom this holiday is more meaningful than it should be for me as an adult. Still, I am reminded of the last year we celebrated St. Nicholas with my family, or rather, the first year we didn’t. That was because of me: I had been admitted to the mental hospital shortly before and my parents didn’t want the hassle of having to watch me while I was on leave, so at first they suggested they celebrate the occasion without me. That year, my sister refused and the celebration didn’t go forward at all. Now that my sister has a child, there’s no way she’s going to care about whether I’ll be included or not. In fact, I’m pretty sure she’d rather have me excluded.

Loneliness, however, can take other forms too. Like I mentioned last month, loneliness comes from within a lot of the time. That’s why you can feel lonely when you’re surrounded by people. I often felt this way in the high school cafeteria.

I find that what helps me cope with loneliness is to surround myself with positive influences, both in the form of people and activities. I mean, I could dwell on my family’s rejection of me, but I do have a loving husband and loving in-laws. I also have caring staff and nice fellow clients, some of whom I consider friends.

It also helps me to engage in fulfilling hobbies, such as writing, reading and crafts. Through my blog and Facebook groups, I feel a genuine sense of connection to the outside world. Reading helps me escape my problems, including my sense of isolation. Crafts distract me and help me feel that I can be productive in a way. All of these help me overcome my sense of loneliness.

How do you deal with loneliness?

Suicidal Ideation in Childhood: Some Reflections

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

Thieves!

When I was little, my parents would store their sweets (usually licorice but sometimes other sweets too) on a shelf just within my and my sister’s reach in their pantry. I’m pretty sure they’d tried putting them in higher places but we’d just climb up stairs or other furniture to reach them.

Invariably, on Saturday and Sunday mornings, when my parents slept in, I’d lead my sister to the pantry and we’d steal some sweets. Yes, I am pretty sure I took the lead.

I obviously thought they were unaware. That is, until one day when I was five and had just learned to read. There it was, on the sweets shelf, a paper that read “BOEVEN” in large print. This is Dutch for “crooks” or “thieves”. My parents never actually confronted us about grabbing their candy except on this one playful occasion.

In reality though, I still wasn’t truly aware that my parents knew. In fact, I remember one day when I was about fifteen, my parents had left like eight hamburgers on a plate in the kitchen and I sneaked into it to eat one at a time. My parents never confronted me and it wasn’t until a few years ago that I realized they must’ve known. That is when the shame at having eaten this many hamburgers caught up with me.


This post was written for Friday Writings, for which the optional prompt this week is food. It is a an autobiographical piece.

Too Many Toys

Today’s topic for Throwback Thursday is toys and pastimes. The first question Maggie asks in her post is: “Did you have a lot of toys?” The short answer would be that yes, I was privileged to have quite many toys, but I must say I wasn’t so spoiled that I always got the latest trendy toy.

I probably shared this story before, but I played with toys quite a lot until I was at least eleven. By that time, my parents and teachers were looking into options for secondary schools and their opinions couldn’t have been any different: while my parents wanted me to go to mainstream grammar school, my teachers felt special education at their low-level secondary school for the blind, preferably residential, was in my best interest. My mother one day took me for a “mother-daughter walk” explaining the school’s stance and said that the reason they felt I needed residential special ed, was my behavior. That, in turn, she attributed to my having too many toys. The logic, I never quite understood, but it must’ve been something like my being so spoiled that I somehow felt entitled to display challenging behavior.

She went on to explain that, at the residential school, I would only be allowed one doll and one soft toy. She had given me a Barbie doll for my birthday earlier that summer, but told me she regretted it as soon as she received the school’s report. Needless to say, I always felt weird about playing with dolls from that age on, even though I continued to play with toys and dolls and everything until I was at least fifteen.

Fast forward some ten to fifteen years. When I was in my mid-twenties and diagnosed with dissociative identity disorder, I felt it might help my littles (child alters) if we had toys again. I first bought a box of old Barbies for €70 on a marketplace site. That wasn’t a wise decision as, though the box did arrive, the Barbie dolls were in such bad condition I eventually threw them away. I then decided to buy a couple of new ones at a toy store, but the littles hardly played with them. They prefer soft toys.

Speaking of which, one of Maggie’s questions is whether you still have any toys from your childhood. I don’t, as they’re probably all at my parents’. However, I do still have my stuffed whale Wally, whom I got when I left the NICU at three-months-old. I still sometimes sleep with it.

Wally

Did you have many toys growing up?

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”.

Treatment Plan

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.


This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.

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.

Do-Re-ME: My Favorite Music

Today, I came across Leslie’s Where Bloggers Live. This month’s theme is favorite music.

I am a kid of the 1990s, so, though my parents had a record player, I mostly grew up with cassette tapes and CDs. I remember my father (who was a stay-at-home Dad until I was thirteen) would also often have the radio on in our living room. He generally listened to public radio stations, which didn’t play the latest music and generally were more talk-focused anyway.

As a child and preteen, I was clueless about pop music. I remember the odd ’80s or early ’90s Dutch song, but I had no idea what was “hot”. My parents, aside from public talk radio, listened to 1970s protest songs.

When I was eleven in 1997, my mother encouraged me to develop an interest in music in order to “fit in”. For this reason, I pretended to be into the Backstreet Boys, even though I’d never consciously listened to any of their songs. In reality, I continued to listen to children’s songs for years. In fact, when I went to summer camp in Russia with a group of other teens at age fourteen, I was made acutely aware that listening to children’s songs was definitely not appropriate for someone my age.

I got a stereo player for my twelfth birthday in 1998 and I did buy the odd CD to play on it. I was mostly into ABBA or its upbeat cover band the A-Teens (which I spelled “eighteens” for years). Once I got into mainstream high school in 1999, I occasionally bought CDs recommended by other students in the school newspaper. I still to this day love The Corrs.

I eventually started listening to commercial radio stations at around age fifteen, but I never quite developed a truly defined taste in music. I still like to listen to all kinds of music. Some days, I’m into Dutch songs, usually dialect rock (such as Normaal or Mooi Wark) or truck driving songs. Other times, I’m into Celtic folk, country (usually 1970s songs such as by Bobby Bare or Buck Owens) or southern rock. Still other times, I’m into contemporary Christian music. Sometimes, quite the opposite. I even have a “Punk etc.” playlist on Spotify with songs from the likes of Cock Sparrer. I don’t really listen to that anymore though. Occasionally, I’ll revisit an old favorite genre of mine: world music.

When my now husband and I first met, he asked me what kinds of music I liked. I replied that I liked world music. Once, several years later, I played a favorite CD of mine with Latin music on it, which I’d had in mind at the time. He was glad he hadn’t known back then that this was what I’d meant or he might not have decided to meet me again. He, by the way, was the one who introduced me to most of my current favorite genres and artists.

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.