How Far I’ve Come #SoCS

Posted on by Astrid

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.

Ten Scary Yet Fascinating Story Elements

Posted on by Astrid

Today’s Top Ten Tuesday (#TTT) book meme is a Halloween freebie. Here in the Netherlands, Halloween is becoming more popular than it used to be, but it’s still celebrated not nearly as much as in the United States.

I don’t really care for ghost stories or the like. I just can’t be fazed by them. That being said, there are a number of story topics I find scary. Yet most of these I also find fascinating.

1. Murderers. It’s interesting in this respect that I don’t often read thrillers or crime fiction, as I do love crime podcasts. I find it fascinating to understand what makes murderers tick, but I also find it pretty scary.

2. Epidemics. Okay, I haven’t read any book about an epidemic so far, except for an educational historical children’s book about the bubonic plague. That being said, I find it fascinating and scary at the same time when I come across books with this topic. I recently heard about a book by Dutch thriller author Tomas Ross about a fictional pandemic. The book was originally published in 1987 and was set in 1996. The book was recently republished because Ross’s pandemic bore interesting similarities to COVID-19.

3. Strange neurological diseases. I used to be fascinated by Oliver Sacks’s books, but still found them a little scary. The same goes for Lisa Genova’s Inside the O’Briens (see my review). That one really got me worried even though I have no reason to think I might develop Huntington’s Disease. Also, I remember once watching a documentary on a disease called fatal familial insomnia. It’d almost be funny to say I had trouble sleeping afterwards.

4. Medical stuff that doesn’t go well. I am fascinated by intriguing medical stories, but they also scare me, particularly when something goes wrong.

5. Poison. I find it generally fascinating to learn about how poisons work, but still I find it incredibly scary when someone in a story is poisoned even when they survive.

6. Dictatorships. This is one reason I have a love-hate relationship with dystopian novels. I loved Brave New World but still haven’t gotten down to reading 1984 and don’t think I ever will.

7. Insects. And snakes. And other dangerous animals. When I had a Netflix subscription, I loved watching 72 Dangerous Animals and the like. I am also still looking forward to reading Hatch, the sequel to Kenneth Oppel’s Bloom. Still, the topic does scare me.

8. Locked institutions such as prisons, insane asylums, etc. Particularly if strange/creepy things happen there. Like, I still want to read The Institute by Stephen King, but I’m not sure it might be too scary.

9. Cults. These are really scary and yet fascinating in a similar way that dictatorships are.

10. Nuclear weapons. Okay, I haven’t read any books on this topic, but I find the topic very frightening (of course) but also fascinating. I remember listening to Dutch historian Maarten van Rossem’s audio lecture on the atomic bomb some years ago and finding it so intriguing to know exactly what time the bomb exploded over Hiroshima.

What “scary” topics do you find fascinating in books or other media?

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Posted on by Astrid

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo