It May Be May #SoCS

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

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

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

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

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!

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?

Truthful Tuesday: Birthdays

Hi all! It’s Tuesday and I’m feeling a little better still than I was yesterday. I’m still having a cold, but it’s mostly manageable now.

Today I’m participating in Truthful Tuesday. This week’s question is: as you have gotten older, do you still celebrate your birthday, or has it become just another day to you?

The presumption behind this question is that, as we get older and the effects of aging become less positive than they were when we were a child or teen, some people no longer appreciate their birthdays.

I find, and maybe this will change when I get even older, that the opposite is true. I will be 35 in June and have found that, with increased age, does come increased wisdom. I am probably not old enough yet to start feeling depressed about my life’s regrets. That doesn’t mean I don’t have many, but they don’t weigh me down that much as of yet. I hope that won’t come either, but I’m pretty sure it will.

In contrast, when I was a child, I feared growing up. My birthdays were fun because of the gifts I got, but that’s about it. I never felt that flash of excitement that some children and teens feel as they get older. No, not even (or especially not) when I turned twelve, sixteen or eighteen.

When I turned 30 in 2016, I did have some mixed feelings. I was excited to be allowed into the over-30s groups on Facebook but also felt that, at my age, I could no longer have emotional outbursts. I still did. That latter feeling subsided over time though as I realized a neurotypical ten-year-old wouldn’t have meltdowns like mine.

My birthday has always been an exciting yet stressful event. Now though, it’s more exciting than stressful usually. My parents don’t make a point of telling me to act grown-up anymore. For this reason, them visiting me for this occasion – usually the only time a year I see them in real life -, is mostly fun.

I do indeed still celebrate my birthday. Months in advance, my husband starts asking me what I want for my birthday. It’s also a bit of a tradition that he takes the week around my birthday off from work.

Most years, I spread out my birthday party over several days, as I don’t want to have the house full of visitors. Last year, the visiting restrictions due to COVID were lifted the day before my birthday. This meant that my parents could actually take me out for a ride in their car rather than having to sit in the care facility’s garden for the entirety of the visit.

My mother-in-law visited me the day before and brought me the giant bear soft toy. That’s another thing that makes birthdays fun: I love getting gifts. Of course, I can buy myself the things I really want too, but I actually like the fact that people give me something I wouldn’t buy myself.

Maybe, now that I’m inn my thirties and don’t have to act grown-up, as I’m on disability and in long-term care, I can finally feel the excitement of being a kid at heart.

What a Day, What a Year! #SoCS

Today I got my COVID test results. Thankfully, I’m negative. Like I mentioned yesterday, I went into room-based isolation with cold symptoms and a sore throat yesterday morning. That day in isolation was hard. I constantly imagined testing positive for COVID. That’d mean at least five more days in quarantine. It’d also mean I would have to alert my nurse practitioner and the facility’s behavior specialist, both of whom I’d seen on Thursday.

I felt intense guilt about possibly having infected my staff too. After all, when I was still only experiencing a sore throat, the staff tried to reassure me that I couldn’t possibly have COVID. It may be true – I had my second shot of the vaccine last week -, but I couldn’t be sure.

Can you imagine that, a year ago, we were just at the beginning of this pandemic? On March 12, 2020, the first local case of COVID-19 had been discovered. On March 13, the community service event that was due to take place at my day center as part of a countrywide volunteering initiative, had been canceled. The day center closed five days later, on March 18.

I hadn’t seen my husband since the first weekend of March I think and wasn’t going to see him again till sometime in late May. After all, at first visiting the care facility was discouraged, then it was completely prohibited except in rare cases when a family member was essential for a client’s care. My husband wasn’t.

I am so glad that now, during the second lockdown, care facilities remain open to visitors except when there’s an outbreak of COVID or suspected COVID, as in my case yesterday. I am so glad one of my fellow clients, who had her birthday on Tuesday, may receive a visit from her family tomorrow.

I had my own birthday on June 27, one day after the final restrictions to visiting were lifted, provided there’s no countrywide lockdown or COVID outbreak. Though we’re in a countrywide lockdown again, the lockdown policy remains that care facilities can be open. I credit the prime minister’s late mother, who died in a nursing home during the first lockdown or so I believe.

This post was written for today’s Stream of Consciousness Saturday (#SoCS) prompt of day/week/month/year.

Truthful Tuesday: This or That

Good evening all. I am finding that I struggle to keep the motivation and inspiration for so-called quality content. That doesn’t matter, as it’s my blog and I don’t write for my stats. That can’t keep me from being slightly frustrated by it though.

Today I’m participating once again in Truthful Tuesday. The questions this time are a series of rather lighthearted this-or-that choices. I like that! After all, we just heard here in the Netherlands that we’re in lockdown at least until February 9 and curfews or other harsher measures are being discussed. Still, I am so lucky to live here.

Anyway, here goes. I’ll explain some where I can.

1. Coffee or Hot Tea?
Coffee! I do like hot tea on occasion, but only green tea without lemon or other yucky additives.

2. Soda or Iced Tea?
I’m assuming that soda is always carbonated, so then I’d say iced tea. I prefer non-carbonated soft drinks though.

3. House or Condo?
House just because that’s what my husband and I have at the moment. I don’t mind living in a condo though.

4. Pie or Cobbler?
Pie! I had honestly never heard of cobbler and the first translation Google came up with had nothing to do with food. However, the second one made it pretty clear to me I prefer pie. In fact, I can’t stand cobbler.

5. Cornbread or Biscuits (The US kind)?
Cornbread. I have no idea what U.S. biscuits taste like, but I do like cornbread.

6. Computer or Smart Phone?
I honestly can’t do without either. Does that sound weird? I mean, of course I can do without them, but if I want to accomplish everything I do on a daily basis, I certainly need both.

7. Hotel or Camping?
Hotel for sure. As a child, I often went camping with my family, but it got harder the more sight I lost. Now I don’t really think I can do it.

8. Swimming Pool or Ocean?
Swimming pool. I can swim in a lake or the ocean, but I don’t like it nearly as much as I like swimming in a pool.

9. TV Shows or Movies?
TV shows. I don’t have the attention span to follow a movie.

10. iOS (iPhone/iPad) or Android (Samsung, LG, et. al.)
Definitely iOS. It’s far more accessible for blind people than Android, although Android developers are making progress too. I started using a smartphone before Android could be used by not so tech savvy blind people. Though I might be able to make the transition to Android now, I just won’t.

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.