A Courageous Choice

Posted on by Astrid

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

Final Exams

Posted on by Astrid

Today, this year’s high schoolers should have heard whether they passed or failed their final exams for graduation. This inspired me to use one of Mama Kat’s writing prompts for this week, which is to write a post on the word “final”.

It’s been sixteen years since I graduated from high school. At the time, mobile phones were already in use, but they weren’t as popular as they are now and smartphones didn’t exist. Nonetheless, we were instructed not to text each other that we’d passed. After all, those who had failed would be called first and then those who had passed their exams would be called in alphabetical order. Texting each other would ruin the surprise effect. All of us would receive a call between 12:00 and 1:00PM. Since my last name starts with a W, I knew that I’d either be called at five past twelve if I’d failed, or at close to one o’clock if I’d passed.

Even though I had gotten pretty good grades on my school-based tests, which would make up half of my final grade, I had no idea how I’d done on the final exams. You could check your answers with a grading sheet available online once the exams were over. I didn’t do this with most subjects, I think. I did it with English though.

I at the time had an 8.1 out of 10 GPA in English. An 8.5 would be a nine. Though six is enough to pass, I badly wanted the nine. This meant I’d have to have an 8.9 on my final exam. When I checked, I found out that, most likely, I would not reach this. It however also depended on how strictly they were grading. After all, if most students scored lower than expected, they’d use a less strict grading system. If the grading folk were less strict than expected, I could get my desired 8.9.

Once the day we would be called arrived, I sat by my home phone from 11:30 until I was being called. I got called shortly before one o’clock: passed!

We were expected to be at school that afternoon to look at our grades. I had a surprisingly high grade on my geography final. That one had been adapted by my teacher and I’d taken it orally due to my blindness making the regular final inaccessible. As it turned out, the independent review teacher who had sat in on my final too, had been so incredibly impressed with my (quite mediocre) performance that he’d upped my grade. This made me feel guilty, but thankfully none of my fellow students knew.

As for English: the grading folk weren’t so kind this time. I passed with an 8.8, so got an eight out of ten GPA in English.

I, in fact, only got sevens and eights in all subjects, seven eights and eight sevens. This just about meant I wouldn’t be able to get accepted into selection-based college programs. Then again, I wasn’t intending on studying medicine or the like. In fact, now I’m more than grateful that I don’t need my high school diploma for anything anymore. I don’t even know where it is, nor do I care.

Mama’s Losin’ It

A Winter Memory

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts for this week is to share a favorite winter memory. Now I don’t personally like winter. I however have this weird kind of love/hate relationship with it and especially with snow. It looks beautiful, but my already almost nonexistent orientation and mobility skills go out the window entirely when it snows. Still, I am going to share a memory involving snow. It’s not really a cherished memory, but I’d really like to share it.

On Friday, November 25, 2005, the eastern half of the Netherlands was suddenly hit with a big snowstorm. I lived in Apeldoorn in the central-eastern part of the country. During the week, I attended a rehabilitation center for the blind also in Apeldoorn at the time. It was a residential center, because blind people from all over the country went to it. That being said, the center closed on Friday afternoon for the week-end.

The snowstorm started at around noon. I left the center to go to the bus stop for the bus home at around 1PM. I hardly made it to the bus stop, only to find out public transportation had been canceled because of the weather.

I walked back to the center to call a ParaTransit taxi home. They first informed me it might take several hours for the taxi to arrive, then called me to inform me all transportation had been canceled.

By 4PM, my sister offered to come to the center by tandem bike to take me home. This sounded crazy even to me, but she persisted.

I need to add here that, like I said, clients of the center came from all over the country. The day staff were calling the manager by this time to request clients who lived out of city could stay at the center for another day. This would’ve been doable, as the center did have beds for during the rest of the week and the staff offered to get them some takeout food and stay for the night. The manager though refused.

By 4:30, a staff had decided to drive me home. My sister did end up cycling through the snowstorm to the center, but thankfully she didn’t have to make the way back with me on the tandem as well. That would’ve been nearly impossible, as I struggle to put in enough strength to do my part of the biking even in normal weather.

Some clients ended up staying with staff for the night, including blind staff who didn’t really feel comfortable with it. Of course, the manager didn’t take in any clients. Some other clients ended up being taken home by taxis in the evening. One of them made it home to southern Limburg, which is normally about a 2 1/2 hour’s drive, at five o’clock in the morning. The taxi driver ended up hitting the crash barrier on the way back north.

Needless to say the resident council, which I was a member of, filed an official complaint about the manager’s way of handling the situation. The man from southern Limburg was the resident council representative for the broader organization’s client council. He and the clients who’d had to stay with staff, were offered a sheepish apology and some flowers. The staff involved didn’t even get those.

Now that I’ve written this post, I realize November isn’t technically winter. Let’s call this a snowy memory then.

Mama’s Losin’ It

A Twelfth Grade Memory

Posted on by Astrid

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It

The Summer After High School

Posted on by Astrid

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.