A Bottle of Hope

Posted on by Astrid

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

Powerful

Posted on by Astrid

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!

This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

I Am a Rock #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “roc”. I didn’t know that even is a word, but we can use words with “roc” in them too. I was immediately reminded of “rock” and then of the Simon & Garfunkel song “I Am a Rock”. As I assume most of you will know, it goes like: “I am a rock, I am an island. And a rock feels no pain, and an island never cries.”

This reminded me of the fact that, at around age thirteen, I would describe my class as a country with lots of states and one of them, me, would be an island. Think Hawaii. This, of course, symbolized the fact that I felt like an outsider or even an outcast in my class.

One day, I showed a girl in my class the piece about the island. This girl promptly decided to type on my laptop and let my text-to-speech read: “Astrid is my friend.” She probably felt pity for me, as the friendship never lasted. It was rather based on rules, as was my entire class’s associating with me.

Like, before I found my way around the school by myself, classmates had to sighted guide me around. There was an entire schedule which had the girls be sighted guide and the boys carry my backpack, until I decided, with a little nudging, that I could carry my own backpack. I mean, yes, it was heavy with my laptop and all, but so is every early secondary schooler’s backpack. From then on, the boys would sighted guide me too.

This meant I had to sit with them during recess. After the island story incident with my “friend”, she and her clique allowed me to sit with them everyday during recess even if it wasn’t their turn to be sighted guide.

At the beginning of my second year at this school, I decided I’d had it with sighted guides and especially with the schedule. I tried to find my way by myself, often struggling, but this was better than to have people assigned to me who didn’t want to associate with me. Quickly, that became the entire class, including my “friends”.

I am a rock. I am an island. And a rock feels no pain. Literally. By the end of my second year in this school, I had mastered the coping mechanism of detaching from my surroundings and myself. I felt like I lived in a movie. I still feel that way at times, even though I have no need (I hope) to escape my current life.

First Impressions

Posted on by Astrid

I’m rather late to write today. I wasn’t sure what to write about, if anything, for all of today. Then I came across
Fandango’s provocative question for this week. This definitely inspires me. Fandango asks what impression you think you make when people first meet you?

Well, let me start by saying it depends. The factor that makes the difference is largely whether I’m using my white cane. When I am, that’s obviously the first thing people notice. Then most people will immediately know that I’m blind and their further impressions of me will be as much based on me as on their views and prejudices about the blind.

When I’m not using my white cane, people will usually still immediately notice that I am disabled, but be unable to tell what my disability is. This surprised me for a long time, as I always thought the fact that I’m blind is obvious from the way my eyes look. Apparently not, at least not since my cataract surgery in 2013.

In fact, I didn’t know that it’s not obvious somehow until I attended my second online cerebral palsy meeting. In the first, I had mentioned my additional disabilities immediately, but I had no reason to the second time around. Midway through the meeting, I got to mention it and the people who hadn’t attended the previous time all said they hadn’t known.

Generally speaking, I allow strangers and near-strangers to make their own judgments about me and my disabilities based on the first impression, be it that I’m blind or that there’s something “wrong” but they cannot be sure what. Sometimes I correct them, but less and less so. I mean, I could correct taxi drivers that it’s not obvious that all blind people live in care facilities, but why should I? I don’t think I have an obligation to justify why I need 24-hour care and people who are just blind don’t. I honestly don’t feel it’s my responsibility to set an example of competence that I cannot live up to just so that others won’t stereotype other blind people.

I once was approached by a police officer, because I had been wandering the neighborhood without my white cane. That policeman assumed I was either high on drugs or intellectually disabled, as he asked me whether I’d used or had eloped from the local institution. At the time (when I was around eighteen), I had virtually no understanding of the impressions I made on people and I initially corrected him. My father thought the police officer was stupid for assuming I had used drugs or belonged in the intellectual disability facility. I think my father’s preconceived judgments about me and anyone interacting with me, were farther off than that police officer’s.

It May Be May #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

It may be May already, but the weather’s still not that good. Though it is a little sunny with some clouds here, the temperature’s still low at a high of 12°C today. It’s supposed to rain all of next week and the temperature isn’t supposed to get above 16°C and that won’t be till next weekend.

The month of April was very chilly too, though it wasn’t too rainy. Oh, how I want higher temperatures!

In May, I usually anticipate summer eagerly. My sister has her birthday on the 13th. This is also when I start counting down to my own birthday at the end of June.

This year though, it doesn’t feel like it’s May already. It feels more like the beginning of March. I’m not sure whether that’s due to the weather or something else. Maybe it’s also because our lockdown still hasn’t eased much and we’ve been in it for so long. I mean, last year we were still in lockdown by early May too, but that one wasn’t implemented until the middle of March. Ugh, I can’t wait for some restrictions to be lifted. Oh well, some were, but I think the infection numbers are still too high for me to take advantage of that. Of course, I’ve been vaccinated and my parents too at least got their first shot. However, my husband and mother-in-law still haven’t gotten theirs. My husband isn’t sure he’ll ever be vaccinated at all.

Ugh, I’m tired of COVID-19 restrictions. I’m pretty sure they won’t work anyway. I mean, the infection numbers and hospitalizations are quite high and we keep getting glimmers of hope that they’re going down soon. I doubt it. I was also scared to find out that there’s an outbreak of COVID in a nursing home even after vaccination. Ugh, I was hoping I’d be protected. This freakin’ pandemic has been going on for so long!

Remember that, in March last year (I was going to write “last March” as if it isn’t past March 2021 yet), I wrote that I expected life to be pretty much back to normal by September of 2021. I honestly don’t believe that and I think neither does anyone else, though some people are still disbelieving when I tell them this pandemic might go on till 2024. That’s what I’ve read somewhere. I really hope that source is wrong.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “may”.

Color Vision

Posted on by Astrid

As regular readers of my blog will know, I am blind. I wasn’t always totally blind though. As a child, up to around age twelve, I could see most colors. I could still see some very bright colors until I was eighteen.

When I asked the ophthalmologist at the university medical center to put me on the waiting list for cataract surgery in 2013, some color vision was all I hoped for. The doctor said that the best possible outcome was that I could have hand motion vision, ie. see someone’s hand move from one meter away. I didn’t really care about seeing anything one meter in front of me. If I’d have to hold a colored paper five centimeters in front of me to see its color, that was fine by me. I just wanted to be able to distinguish colors again. Unfortunately, though the surgery was at least a partial technical success, I never regained color perception.

When asked at the rehabilitation program for the blind what we’d be happiest about to regain if we ever regained our vision, most of my fellow clients mentioned some variation of independence. I, though, said that I’d be able to enjoy the colors of nature again. Unfortunately, though technology has come a long way, it will likely never be able to recreate an experience remotely similar to color vision.

I can still, fortunately, see some colors, but it’s in my mind’s eye. You see, I have projected grapheme-color synesthesia. When I touch the characters on my Braille display, they evoke a visual sensation of a color. Each letter corresponds to its own color, though some of the colors are very similar. That probably reflects the fact that I was never able to see the full variety of shades of colors that sighted people can. For example, the V and J are both a light shade of green. I can tell them apart if I see them both, in that the J is a slightly lighter, mintier shade, but it’s hard to describe.

Words also have an overarching color. In case you’re wondering, the colors of color words don’t always align with their meaning. For example, the word “Green” is more red (after the letter G) than green, even though both E’s are green.

I love my synesthetic color perception. It makes up for a loss of appreciation that no amount of technology can compensate for.

This post was inspired by CalmKate’s Friday Fun Challenge with the theme of “Colors”. I’m not really sure whether this rambling piece fits the idea of the challenge, but oh well.

The Most Important Milestone

Posted on by Astrid

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

Runaway #SoCS

Posted on by Astrid

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.

Not Quite California Dreamin’ #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

When I was a teen, I dreamt of going to the United States in my third year of college. After all, I was going to be an English major, choosing American studies as my specialty. Then in my third year, I would be incredibly motivated and talented and would be allowed to go on an exchange student visa to the United States.

I had already picked my preferred cities to go to. Most were suburbs of Boston. First, it was Lynn. Then Somerville.

Then, at one point, I got obsessed with Columbia, Maryland, a suburb of Baltimore. Then, finally, Silver Spring, MD, a suburb of DC.

None of these were college towns as far as I know, but I always dreamt of going to college in the city and living in the suburbs eventually. Because, after all, with my incredible talent (ahum) and affirmative action, I calculated that I’d be allowed to stay for some professional career and never go back to the Netherlands again.

Now that I think of it, it’s interesting that I never dreamt about going to California for my studies. I would say that most people choose either the east or west coast. At least people from Europe most likely do, with the Midwest, South and Great Plains being far more conservative. I just envisioned living in New England or the DC area.

And just for the record, it all never came true. I never even majored in English at university. I still haven’t been to the United States, though I hope to visit there someday. Mostly to meet some people I know.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt this week is “Cal-“. I could’ve written about calendar calculation, calories or Calibre (an eBook management tool). Instead, some of the other participants’ posts inspired me to write about my American dream.

Vaccinated!

Posted on by Astrid

Today, Fandango’s provocative question (#FPQ) is all about the COVID-19 vaccine. Fandango asks: have you gotten vaccinated for COVID-19 yet? If not, are you planning to? If you have, or are planning to, how do you think your life will change afterwards? If you’re not planning to get vaccinated, why not?

First, yes, I did get the COVID vaccine. I got the Pfizer one and got the first shot in early february and the second just shy of two weeks ago. I never doubted whether to get the vaccine or not. I, after all, have always been pro-vaccine and especially with the coronavirus. I mean, I’m not worried that I’ll get very sick with COVID, but I do worry for those I live with. I also think that, the more people get vaccinated, the more likely we are to return to some semblance of normal. I’m not naive though: I know COVID will likely never fully go away. My hope is though that we can control the worst effects of the pandemic.

As for how I think things will change now, not likely anything will within the near future. Our staff have all gotten the letter to ask them to make a vaccination appointment, but they’re due to get the AstraZeneca one. With that requiring eleven to twelve weeks between the first and second shot, they won’t likely be protected against COVID until sometime in May or June. That is, if the Netherlands starts using the AstraZeneca vaccine again. The government has currently suspended it for now because of “concerns”.

Well, let me be very clear: even if one in 100,000 people do get thrombosis after being vaccinated, and it’s actually the vaccine that’s to blame, I’d still have taken the risk had I been offered this vaccine rather than the Pfizer one.

That’s not to say there are no side effects. I had none from the Pfizer vaccine and even worried I hadn’t gotten the shot right. Many of my staff got some immune reactions like fevers or a sore arm due to the first AstraZeneca shot. Those are short-term though and, to most people I know, are outweighed by the long-term benefits of the vaccine.

Ultimately, I hope that, once my staff are all vaccinated, the day center will reopen. I think that’s the first positive thing that will come out of the vaccination campaign. Other than that, I’m not sure. I rarely attend concerts or other large events, so I won’t need my vaccine report for those.

Speaking of which, I’m not 100% decided on the topic of vaccination reports. In the voting guide for today’s election, I did say that I do think venues should be allowed to ask for a vaccine report before allowing people in. I do feel that, if you’re able to be vaccinated, it’s really a kind of moral obligation that you are, but there are also people who aren’t able to.

What do you think?