Hello again, folks! I'm sorry for the long break but I just didn't know what to do. I want to cheer people up, I want to bring content that inspires joy – but this is also my blog, and things are not joyful. Thus have I faced that it's time to do a Really Heavy Entry, get a bunch of stuff out in the open, and then move on back to trying to make people feel better like I want to.
Here it is: the blog entry that's going to wander all over the place. I have so much to say, but so much of it runs through and around itself and each other in the form of intertwining situations and it's all so complicated, that some chaos in my goings-on about it is inevitable. Most of you don't even know what the sitch is in the first place, let alone how the ongoing pandemic and upcoming new one are affecting that. Most of you do know I'm disabled, that I have a lot of aches and pains and limitations, but none of you know yet how irrelevant that is in the face of what I need to protect.
You'll notice I say "I, I, I" a lot, as though I, a happily married woman with a young adult daughter, need to do everything by myself. Guess what? This is essentially true, particularly right now. Let's sketch it out. My husband of nearly 30 years has disabilities of his own. I don't need to go into a lot of detail about it to say that daily, under normal circumstances, he does a great deal but suffers from fatigue issues which complicate how much, and at which pace, that can happen. But these are not normal circumstances. Five months ago, my husband suffered an accident. Herewith the first sub-loop: How Rubber Chickens Saved My Husband's Neck!
Twice a week my husband runs a marvelous activity known as his Online Pub. He and a varied selection of his dear friends get together online and generally have a blast, yakking it up about everything under the sun, drinking an immense amount, sharing music clips and videos with each other, you get the picture. Very occasionally this continues so far into the night that it becomes day. Cue this past 31 January. I got up at about 07:30 as he was closing things down, getting himself a snack, getting ready to go to bed. This isn't as disruptive to his schedule as it might sound: he has two
sleep disorders, Delayed Sleep Phase and Sleep Phase Non-24. He usually goes to bed in the wee smalls and gets up in early afternoon anyway.
So this time he went up with his noodles or whatever snack it was that day and I settled in with my first cup of coffee to put on the news and play my word games and wake up. Only a few minutes later he found himself in need of the restroom and was unfortunately, in his haste, not careful enough at the bend at the top of our typically steep Dutch stairs.
From where I was sitting, out of sight of the end of the hallway and the bathroom on the other side of the living room door, I heard this: THUMP CRASH BANG WHAM SLAM… Squeeeeee-eeeeee-heeeeeee-eeeeeeee-eeeee..... as his head landed neatly in the large box of squealy rubber chickens at the bottom of the stairs
Now, we all do laugh about this nowadays, because let's face it, it's freaking hilarious, but at the time, obviously, I was just immediately on my feet and shouting, "Are you okay?".
At least he groaned, so I knew he was alive. I'll cut to the chase: thanks to the rubber chickens (it's a Zappa thing) his head was okay, but it turns out he did tumble, not slide, all the way down the stairs, and all was not well. He was actually very lucky: he sustained "only" a Grade 3 ankle injury, which five months later is still visibly swollen and extremely limiting but is definitely healing. After the first three or so months he was able to carefully get back to the supermarket shopping, but he still can't stand up in one place long enough to do the dishes, one of the chores I've had to take over. He's going to be okay, thank goodness, but he's in a lot of pain, his activities are restricted, at least several more months of patience and care are required, and this really isn't a good time for stuff like this at all.
I'd say let's get back to the "main story", but we haven't even really got into it in the first place, have we? Not that there is one anyway. It's hard to know where to start with this, there's too much going on.
Let's pretend for a moment – just a moment – that there's no pandemic happening, let alone the second one coming to complicate everything further. Let's pretend that my daughter's needs exist on their own, and not against the backdrop of global panic, societal indifference, and public failure. You see, my daughter and her needs are the Most Important Thing right now. First of all, of course that's true, because I am a mother and this is my child. Nobody should have any business bringing a child into this world, creating an entire independent human being, if all they're going to do is marginalize them. But additionally, my daughter has "special needs". That's not a euphemism, she has needs, as do many of us, which are above and beyond those of most people her age. It's not the autism; sure, that causes problems with social structures but that's just a difference, just a thing to work with and find a way through to enable spending time in a society that doesn't respect differences. It's not that she's trans; that, to be fair, is the least interesting and important thing about her because when you get right down to it it just means she's a girl, like I am, even if there are some extra steps and hurdles to be dealt with in order for her to be able to embrace herself fully. Anyone who thinks just being a girl is super interesting or a big deal needs to get a grip. But she is trans, and unfortunately that involves certain unavoidable [medical] appointments sometimes which require leaving the house. But again, those appointments and arrangements may be a hassle but in our hypothetical, postulated non-pandemic world, that's just not some kind of problem any more than, say, dedicated involvement in a sport or extracurricular activity would be.
No, what the actual, real, genuine PROBLEM is, is that she's sick. And we don't know why. Or rather, we do know why, sort of, but not what. Let's start at the beginning with that one. The beginning can be found in an entry in this very blog, Coronablog 5, from 4 April, 2020. That's when Ruby developed an illness which we thought was Covid but turned out not to be. Recent blood tests also indicate that it probably wasn't Epstein-Barr virus, or at least if it was it left no trace behind. So probably it was "just" very bad flu.
You can read those entries from those days and understand how sick she was - but nothing could have prepared us for the reality of now. You see, since then, throughout her unceasing exemplary exhausting work making up most of the school year during an ongoing school year, throughout her coming out at school and in society as herself and starting the program to fulfillment, throughout the endless medical and psychological and legal appointments required to get society to accept her as herself, throughout the required first year of college (which would've been impossibly heavy under the circumstances even were there not a pandemic, and even were not all those around her ignoring the mask mandates which at that time still existed), throughout forced psychological assessments and physical therapy attempts at strength-building, she has been getting weaker. Not emotionally, not psychologically: she's the strongest person I know, and I am in awe of her every day. Nonetheless, some things are simply terrible, no matter how many structures you can build around them to offer support, and this is one such.
So what's wrong with my daughter? We don't know yet. One year ago, shortly after my neck surgery, she was able to walk with me through the dunes for three hours, looking for wild foxes, enjoying nature, getting tired but yes, hiking with a will. Six
days ago, she started using a wheelchair. She can still walk inside the house, a little bit, if she holds onto things. She can't hold her arms at shoulder height for more than a moment, and anything involving moving her body is completely exhausting and painful. She experiences periods of near-paralysis, and she is so very, very tired. Certainly it's some kind of post-viral effect, probably autoimmune, possibly multiple sclerosis. We've been to the neurologist. Next month we have an appointment for an MRI which will hopefully tell us more.
For now, the wheelchair we're using is a loaner from a governmental department that provides them on the insurance's dime pending our acquisition of a motorized permanent one from the municipality, a phone call about which is scheduled for in a couple of weeks. It's not in the very best of shape, and it's an effort for me to push it around, which means that for now, I am, again, exerting myself far in excess of medical advice and,
based on how I'm reacting to it, what I actually can sustain. Oh well. This isn't about me. And anyway it's a sincere joy to get out of the house WITH her again, to go to the park and on walks. I missed that a lot.
And that, folks, brings us up to, shall we say, now. That's the background stuff, the white noise, the backdrop against which the soon to be dueling pandemics have risen up to chip away at my faith in humanity as a societal structure, in global governance, in my own ability to protect my family, to function. I don't even know how to talk about the public response to Covid in the Netherlands without becoming spittingly irate. First of all, all protections, all mandates, all public health measures, have been scrapped.
In the words of our very own health minister, we don't need such things because: there is no point in protecting people who are already vulnerable, because they're sick already and therefore unhappy, and protecting them from Covid won't change that. Once they (WE) have regretfully all succumbed to the virus(es) or found ways to completely isolate themselves (OURSELVES) inside their (OUR) homes, the Netherlands will somehow, due to the magic of non-existent herd immunity, enter a golden age of complete gratification peopled by incredibly healthy and strong paragons of the human race. In order to achieve this, says the Dutch government, we need to make sure that "everyone" has good mental health, and the only way that people can have good mental health is to get out and party with each other while spending lots of money on lattes, manicures, concerts, restaurants, and so on.
This is far from the first time that I have been openly not considered a part of "everybody", but as an NPC I'm used to it. I cannot express to you how much I resent it for my daughter though. How dare she be considered expendable, how dare people consider her suffering a suitable price to pay for a fucking manicure? But so it is, this is the world in which I have to keep her safe.
I warned you already this is a rambling entry, so here come some more side loops: I have several stories to tell about the general public's complete disregard for the safety of others during these perilous times, one taking place waaaaay back when my kid was still being forced to go to college and the government was still pretending to care about the Covid pandemic, one from very recently, long after all that stopped, and a couple of shorter personal rants about the sad state of affairs in today's world in which quietly protecting oneself is seen as an act of public aggression.
This first story, much as the rest of them, still has me seething months later. My daughter was, as has been made clear, already not doing well at all. For the first few weeks of the first year of college I would escort her there by bicycle, a trip of about 20 minutes, which left her wrung out with exhaustion and me, thanks to the nerve damage in my upper right quarter only partially alleviated by the spinal surgery, literally shaking because my neck isn't all that stable yet. At first only in bad weather but then regularly, we were forced to switch to the bus. At this time, mask mandates were in full force although often ignored. Technically, social distancing meant that bus drivers were supposed to limit the number of people riding at any one time, but there weren't any extra buses and 16 and 17-year-old first-year college students have to get to school. Thus it was that we often found ourselves crammed into buses literally pressed against the wall by shouting, bouncing, highly energetic teenagers, most of whom didn't give a damn about wearing a mask. Cue the Vigilante Bus Driver.
This absolute waste of human skin picked up a throbbing, squirming, seething mass of teenagers at the station (we had already been on for several stops, and had seats). Once we were a block or so out from the station, far from the next stop, he picked up his little intercom unit and addressed the throng. He began his manifesto. "Hey everybody," he quipped, "isn't it hot and stuffy in this bus? Aren't
you tired of hiding, of holding your breath? Take off those masks! I want to see your smiling faces! Enough of all this, I say! Go on, rip them off, show me your smiles, let's have some freedom on this bus!" I deeply regret that I wasn't recording him; now I try to keep a spy device with me in public. I deeply resent that most of those teenagers took their masks off. Not a single one of them, especially the driver, cast a single thought to the idea that anyone on that bus might be medically vulnerable or that if they were, that should matter. But I'm not surprised: the government keeps telling everybody that the vulnerable have no place in public, that if we care about ourselves or the people we're protecting, we'll stay isolated. We'll stay in our homes. Either we all somehow have a car or we can all afford to take a taxi every time we need to go anywhere, or we'll magically find a way to get from place to place without walking or biking or using public transport, and if we don't, we obviously aren't that concerned with protecting ourselves, so why should anyone else bother? This is what personal responsibility means here.
I did report the bus driver and I did talk about it on social media and I did hear back initially that the bus company "takes this very seriously" and "would talk to him". I do know, from a bus driver who replied once on social media a long time ago, that they must've "talked to him" because although apparently no disciplinary action was taken, he changed his in-bus-company profile picture to one of him with duct tape over his mouth. So, umm, great? In general I've gotten a lot more flak and hassle from other people for caring about the incident enough to report it than apparently he got for carrying it out. Oh well, right? Sucks to be me.
The other major incident was one of the most terrible public service experiences of my life, and that is saying something. Some time back my daughter and I needed to be in Amsterdam – a trip fraught with hazards for two disabled people, one of whom probably has an autoimmune condition. It was unavoidable; we needed to finalize the paperwork that would change her birth certificate to her actual gender so that we can get her ID changed to reflect that forevermore. The journey began with a bus ride, but at least this time the bus was relatively unpopulated although no one was masked and, as is the norm now, many were coughing. Then came a train, under the same circumstances, and then a crowded metro ride. We used to walk everywhere; I am so sorry for my daughter that losing mobility carries with it monumental risks that shouldn't even exist but people can't be bothered to put on a stupid mask.
We made it out of these transport nightmares to a large open square by City Hall in Amsterdam (and I took some Good Times With Scar fan art photos), where there used to be a cool Bohemian flea market but now is a gentrified market of tourist-facing kitsch and
trendy vegan café's. My daughter doesn't usually eat in the mornings but what with the rushing around and the stress of getting there, I was pretty starving by this point.
Normally, I don't buy food out. It's too expensive, and I'm an excellent cook. So is my husband, for that matter. There are certain things though which, when I do have to go to a café or lunchroom or restaurant, are serious treats in my book: things I can't afford to have in my own home, even from the supermarket. Therefore, when I spotted a Bagels & Beans, I was excited! Nothing in this world would at that moment have pleased me more than a garlic bagel with cream cheese and smoked salmon, and as we entered the restaurant, I could virtually taste that sandwich. Now, I decided I wanted to look at the menu, to make sure that I didn't go asking for something that wasn't in their daily selection, so we started that way. The barista, a man on the young side of middle-age who bore a passing resemblance to Marvel's Hawkeye as he appears in the TV series, intercepted me, and asked if he could get us anything. I said that I would like to look at the menu for a moment. He said that was just fine, turned to go back behind the counter, but then chose to re-address me by miming pulling on a facemask (obviously, my daughter and I were both wearing them) and said with a little chuckle, "Those aren't needed anymore, you know." Now, I honestly thought that when I replied, "They're not required by law anymore" and went back to looking at the menu, he would take the hint that we had some personal reasons (let alone publicly ethical ones) to choose for ourselves to keep wearing them and, you know, just do his job and sell me a bagel.
But no. Instead of just nodding and turning away or saying okay or anything else socially responsible, he rolled his eyes, started laughing, and said "Oh, come…"
I immediately turned away from him and addressed my daughter, saying, "Let's go somewhere else." We started to walk to the door. As we were walking, he started shouting. "Oh really? Oh yeah?" We just kept walking. When we got to the door, I guess that's when he figured out we were really leaving, because he shouted, "Oh what the hell?" I looked behind me and told him that it would be good if he could respect other people's choices. So he started chasing us. We were well ahead of him, so we were maybe six or so meters out the door when he hit the pavement running, ran a few steps after us, and stood there yelling.
"Listen you… You foolish women!" he shrieked. "I hope you… I hope you take another vaccine!" (Not sure what he meant by that; I surely would like me another vaccine.) By then it was too late to go anywhere else, and our appointment was long and the journey home longer, so I didn't get to eat that day until very late. But it doesn't end there.
When I got home I reported the incident via their own website's contact form. Crickets. After couple of days I started leaving reviews on Facebook, Twitter, TripAdvisor, Yelp, the usual, in both Dutch and English depending on where, saying in each review that it wasn't about the restaurant or the chain, it was about this one guy, and that I hoped he would be spoken to and that they would give more training in general about public-facing courtesy. When I still hadn't heard anything back, I took it that last step and reported it to the Consumer Protection Bureau who said they would reach out to the restaurant. Almost immediately I had someone from head office on the phone, who told me that they take such things "very seriously", that the owner of that location was "horrified", that the employee had been "spoken to", and that I would be in receipt of a generous gift to make it up to us (I had also made it very clear that the whole thing was extremely stressful and traumatizing for my daughter). Two things came of this: first, a tiny package arrived containing a couple of sample -sized chocolate bars in exotic flavors which we gave to my husband because neither of us who were actually involved in the incident like those flavors, a gift certificate for €10 (so about the same amount as the sandwich I never got) which I will use for loose bagels to bake at home if I'm ever near one of their locations again before it expires, and a couple of sample-sized baggies of chocolate covered espresso beans, which my husband also enjoyed. As a gift package it's pretty minimal but all I wanted was the apology, which I got, and for things to change at the restaurant, which I doubt. The chaser came later.
A couple of weeks or a month after all this went down, the Facebook review suddenly got some attention. A woman who totally for sure totally doesn't work for Bagels & Beans or anything started attacking me there. First she asked me whether I had translated the Facebook review (which I had written in Dutch) from English. I replied that no, I had written it myself in Dutch. She responded that she didn't believe me because she had already seen this incident reported elsewhere, in English. I said she'd probably seen one of my own reviews because I had done several in English and several in Dutch in the days following, and she immediately switched tactics.
She started cross-examining me about why I would post this "now" when "mask mandates ended months ago". I told her a couple of times that it didn't have anything to do with "mandates", it's just that my daughter and I are vulnerable and prefer to protect ourselves in public. She ignored this and just kept saying how "implausible" "my story" is because it must've happened during the mask mandates and I was "only posting it now" and why would I do that?
You know what folks? I don't like trolls. I don't like corporate trolls. They're not worth my time. I blocked her. Toodles!
And that's the Crazy Bagel Guy story.
Given that this entire entry has devolved into incidents describing Why I'm Fed up with Nigh On Everybody because they're all trying to kill my daughter and everyone else like her in the name of the Almighty Economy even though that same economy is suffering
as a result, making it all totally useless, I suppose I should wind things up with a little collection of public reactions to me minding my own business in a mask.
Way back quite a lot of weeks ago now, I needed to pick my husband up some cigarettes. The tobacconist is handily located on a loop I can walk from my house past such establishments as a supermarket, pharmacy, pet store, botanical garden, and so on, so it's easy enough for me to grab him his smokes when I'm doing the errands. This is a very small shop, and it was full. There were four or five people crammed in there, which really put it at capacity, so I chose to wait a meter and a half outside the door next to a little pole, politely. A man approached. He asked me if I was waiting to go into the shop and I said yes, so he stood next to me. After a moment, he gestured at my face, at my mask, and said companionably, "I just don't think it's healthy for you to be that afraid." I was a little stunned by someone feeling comfortable saying something like that to a total stranger, but I rallied and replied, "I'm not afraid, I'm just sensible." This apparently struck him as not unreasonable and I think he also realized that what he had said had been a little in-your-face for a random public encounter, so he backtracked a bit and tried, "I think it's possible for it to be sensible to be afraid of something." I nodded at him and returned to minding my own business.
Cue Other Guy. This dude rocked up and looked at both of us with the kind of open smirking deliberate confusion with which one would observe somebody scooping water out of the gutter and drinking it or something, and asked the man why we were standing there. He replied correctly and unemotionally that I preferred to social distance and the shop was crammed. The second man looked at us with open incredulity and then shoved past both of us with unnecessary violence and went into the store. I stated loudly that if everyone had such a huge problem with me protecting myself, I would take myself away from there. This I did, spent about five minutes at the little library on a wall down the street, then went back and bought cigarettes in peace.
There have been many incidents of people just meeting my eyes and then rolling theirs, or muttering "mask!" under their breath as though that means something, or pointing at me in order to obviously say something to a companion. So what? I was a nerd growing up in a small town. I came out as queer growing up in a small town. I've never fit in anywhere. Why the hell would I care that a bunch of strangers think that it's "weird" of me to protect myself? It's toned down a little bit since I blew two months' worth of Patreon money getting my daughter and I slick electronic
N95 masks with built-in HEPA air purifiers: people appear too confused by the obvious high-tech nature of the mask to snap back enough to be insulting before I've already walked on by. It hasn't stopped completely though. The most recent memorable instance was when my daughter and I went to mail a package. The comedy of errors regarding the errand itself can be dispensed with, but I do have to wonder what happened to the concept of customer service. Was it always okay to openly mock your customers? Seems to me it didn't used to be. But anyway, it wasn't such a big incident but it stuck with me. I approached the counter holding a package, and the woman working there didn't greet me, didn't say hello, didn't smile, she just gave me a long, level stare, and said, "You are wearing the mask." I said, "yes." She just kept staring at me, so I decided she needed a little more and said, "it's only sensible." She openly sneered, but then condescended to look at my package and tell me why I couldn't send it.
Is it really too much to ask that people do the bare minimum to at least pretend to consider that other people might be worth not killing?
Every day more callousness drives us farther into isolation. Every day people say things about people like the members of my family not being worth protecting because, let's face it, we're already not healthy and we must be miserable, poor things. It shouldn't be up to us, they argue, to decide whether our lives are worth living: theirs are, as they are, and no inconvenience can be allowed to enter in because they'll "just die" if they don't go to a club and see their friends, they'll "just die" if they can't get that hairdo spiffed up, they'll "just die" if their lives have to change in any minorly inconveniencing way and therefore it's only reasonable that the rest of us should just die to get out of their way.
I want to say I'm not having it. I want to say it goes too far. I want to say it's just too much, too stupid, too cruel. But that doesn't make it stop happening.
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