Note: Wrote this 5 nights ago after we got word that school would not be starting back anytime soon, and I clicked the wrong tab and thought it was lost forever. Realized today that wp just sorts newest drafts to the bottom of the list (dumb). I revive and share not for its literary merit or the golden halo of maturity it affords my character, but because it is a prequel to a future post.
This is the worst year of my life.
Hindsight might have some net losers that were worse, but I really can’t think of what they were right now. None had the same grueling suspended-time quality that 2019-2020 is showcasing.
I thought time was supposed to speed up when you got older.
2006-07: The year I started having nonstop pain and got diagnosed with a chronic, incurable, degenerative neurological disease? There was novelty is seeing new doctors, failing new tests, starting new treatments, learning a new pain language and the limits thereof.
1989-90: The year my dad went into rehab and my mom moved us away for a few months, and I never could find my footing when we got back mid-schoolyear? At least he and I got to watch It’s a Wonderful Life together at xmas that year, and it was Very Meaningful, and eventually school did end and reset, and there was less fighting, for a while.
2011: The year I went effectively blind for 9ish months? Well, yeah, that sucked a lot and I had to quit my dream job and nobody could say if or when I’d ever recover. But also, my friends and family were amazing at stepping up to keep me supplied with good music and audiobooks and road trips and visits. And we had a photographer at our wedding, so I saw the pictures later.
But this? THIS?
There is nothing that can balance this lost year, and I have nothing to do but continue to watch it spool on and on, getting farther and farther behind.
I gave up every place I’ve known, all my friends, my closest family, my therapists and doctors, thrift stores, labels I could read, the ability to flirt with anybody anywhere, my cars to sing in, my trivia team, air conditioning, my own room, 90% of my books…
And for what? Fame, glory, influence, sex appeal, wads of cash?
Oh. Guess I’m not half the negotiator I thought I was.
So my kids could see more of their euro family? Yes — but we only got a few days at xmas in, and then canceled canceled canceled. We could have simply visited. So.
So my kids could get better at German? Yes — but they’re not doing that at home with me. So.
So I could meet new people, buy cool stuff, have new experiences, learn the language? Yes –but I’m sure not doing any of that at home with me, either. So.
I know life wouldn’t be fun or normal if I were back at home, either. I’m not stupid. Shit’s weird and hard and scary everywhere.
But I might be able to eat familiar food that I didn’t have to cook myself, food I could taste. I might be able to see those friends and family from time to time, quarantine be damned. To see people who can see me — imagine! I could go for a drive and sing my terrible songs terribly until I’m hoarse and healing, instead of whispering them in the kitchen and still getting interrupted constantly.
Would I give up being able to order whiskey on Amazon? Absofuckinglutely.
Would I give up great public transit? Begrudgingly, and then I’d fight like hell to make it happen at home.
Would I give up…well, see, that’s the problem. I already gave everything up. This cupboard’s bare. There’s just a bunch of moths where my heart used to be, and a cough I’ve had for two months. Anybody want that? I hear it’s all the rage.
I knew I would be giving some things up to make a big move away.
We sold the house and everything that was in it, but hell if that wasn’t a relief more than a shame, and always tempered with the spoken and un- “we’ll get new stuff, better stuff, just the right stuff.”
Better than a compromise: a fair deal. A blessing.
We sold the cars. “Where we’re going, we won’t even NEED a car!”
Trains are romantic. We could be in Paris by dinner. I’m sold.
And what’s more:
I wouldn’t have to give up my job to follow K’s, since I don’t have one. I wouldn’t have to give up quality medical care – it should end up being more affordable and accessible. I’d have the opportunity to learn a language in its native context. The kids could perfect theirs during these critical years.
Then we said goodbye to the people, my real home. And I knew right away that that was a Bad Deal. No substitutions, no exchanges, no facsimiles. There might be new friends, eventually, but there would be no better friends.
But it was too late.
We were leaving.
. . . . .
In the lead up to the flight over, all the clearing and cleaning and boxing and moving, I lost about 15 pounds and slept even less than usual. We had a series of hard deadlines to make, and with K working full-time and the boys in school, it meant I had a series of hard deadlines to make.
For the first time in my life, I often just forgot to eat. I was too busy.
After caring for an injured spouse on top of all the last-minute moving stuff (K fell and broke her elbow and sprained an ankle and sprained her other arm 2 days before closing on the house, 2 weeks before we had to fly), after caring for 2 small kids on fall break, after one more national holiday with my family, I was exhausted.
So naturally, one of the kids did not sleep for even one minute on the 8 hour overnight flight over. Which means I did not get to sleep any.
It was foreshadowing.
We landed on a Monday morning. K took those first 3 days off work, to help us get settled. Then she was in the office every day, and I had the boys, because there were no school spots for them. Advice from the school authorities: wait until mid-January, after the winter holidays. There will be spots then. (What, is Santa bringing them?)
Six weeks. 24/7/42. Plus the 9 days I’d just had them prior to leaving: 24/7/51.
There would be no rest.
There was navigating foreign currency and supermarkets and transit and language, endless couple’s administravia as we looked for our own apartment and finalized insurance and kept looking for school spots just in case, and trying to keep the monkeys from destroying our temporary apartment furnished with other peoples’ handmade treasures and glass-front closets.
Eventually, mid-January did come around, and we rushed to move into our own place the weekend before school started, since it had a more favorable commute.
The first week they were in school, I speed-shopped every day before picking them up, desperately trying to locate the basic necessities we needed to live independently in a naked space. Towels. Mugs. Extension cords.
The second and third weeks they were in school, I woke up and got them fed and dressed and saw them off, then went back to sleep until 10, 11, even 1pm. Hours I had not kept since college. I almost felt bad about it, but then I would think about the last 3-4 months of ass-busting and roll over and snuggle up and set an alarm so I’d be there for afternoon pickup.
And eventually, after a couple weeks, I just quit needing to go back to sleep. I could go out and see more of the city, source more things for the house, or even start to shop for new clothes, since I’d shrunk out of everything I’d brought. All the stores here are closed on Sundays, so all shopping has to happen Monday – Saturday or online.
I was starting to get the hang of it.
All told, I had six good, usable weeks. I visited one of the 60+ museums in the city. We got a cool bike to make the school commute faster and more fun, and the groceries easier, kind of. I was even starting to make a few friends, thanks to Saturday nights at a pub.
Until they canceled school, the evening of 13 March.
The beginning of the end. The other restrictions that they’ve added periodically since suck, too, but no-school is the ultimate hobble.
I’ll be drowned in children for six weeks, according to the initial closure period running to 20 April 2020. (Those jokers.) They won’t announce until after Easter if, or when, schools will reopen. I’m not stupid, though. Given the current rate of things, they can’t reopen the schools anytime soon.
However, our school year here is supposed to run until 3 July — longer than much of the US — before a six-week-long summer break. Is there still a chance they could go to SOME amount of school before being out for the summer break?
Because the thing is, that first “world’s longest fall break” almost killed me. It definitely left marks. I am not handling this March-April period with any degree of grace or poise. I am beaten down and surly.
Because here’s the reality right now:
I gave up all my things, then didn’t have time to replace 98% of them before all the stores closed. We don’t have enough mugs, and one of my little assholes drop-kicked a toy and knocked one of the six off the table and broke it a few days ago, RIGHT after I told him not to kick toys in the house. We don’t have enough forks. I really need new underwear. I only have one pair of sweatpants. I knew things would be different, but I didn’t think my life would be materially worse here. And so far, it is.
I don’t have my own bed. I sleep on a folding couch in the living room. I don’t have my own room, because “my room” is also everybody’s living and dining room — and now school room. At least back home, I had my own room, my own little bed.
While I am the full-time childcarer, my life is on hold. I cannot do anything else. This is partly my fault: I cannot multitask in the face of their constant interruptions. I can’t read, I can’t converse, I can’t plan, I can’t cook, I basically fail to function. We’re in a full reversion to the newborn period, living in 15-minute increments, but with much more backtalk. Everyday I am less of a person and more a slave to the role that the government and our domestic economy has decided for me. It is untenable.
Gluten-free stuff is a lot harder to find here. Labels are harder to read, and not just because they’re in a different language(s). Eating out is more trouble than it’s worth, except that I need the break from cooking once in a while.
The stress is driving my MS symptoms crazy. My back hurts again, something that had really mostly faded away (no: something I had driven away through a concentrated, sustained effort of lifestyle adjustments, diet, stress management, and occasional herbal medicines which I still have not been able to source here). My legs are stiff and twitchy; even my bladder’s playing at being more withholding than usual. The neurologist I finally got in to see last month had never heard of rituximab as an MS treatment.The university clinic that might actually be able to administer it (I’m due next month) hasn’t decided where to see me, since the regular hospital is being turned into a COVID ward. Hoping they call back before I vegetate.
I had signed up to start my first german course in early May (to run through October, with summer break off). No word from the provider on that yet, but I don’t see how it could possibly start before fall, since they’ll need to let the people finish from this spring first, etc. So that’s at least a few more miserable months of not knowing what the fuck is going on, or how to ask for what I need. And when you’re a person accustomed to knowing wtf is going on and how to ask for things, a few months feels like a really long time. All of this feels like a really long time.
Needless to say, we have not been to Paris by dinner. I was supposed to get a day and a night to myself last week in another city to see a show I could never see in the US (and buy the underwear I need at a 4-story Uniqlo there — equally exciting). K was supposed to take the boys for a few days next week to her sister’s in England so I could have a little staycation. Neither of those will happen.
And even if they do get rescheduled, one day, they will not be enough to make up for what’s conspired since. It’s not about keeping score but trying to find a balance, a rest point.
And things are so far out of balance. I’m turning 40 in just over a month, barely a year out from some of the worst months of my adult life, and damned if fortune didn’t say “hold my beer” and go big.
Realized today I’ve reached maximum Corona saturation. Which means I really topped out weeks ago, but seeing as I consume information and oxygen interchangeably, I was not careful to notice when too much was too much.
They say your gut is your “second brain,” though, so after the sixth(?) day of this IBS runs, (haha! oh how we laugh!), I had to wonder what was up. (Also, Corona panickers, stop fucking hoarding toilet paper, some of us need it right now.)
But considering that since the beginning, I have not actively sought out ANY information on the shit besides the breakdown on the ages catching it and the mortality rates, I’ve still been absolutely bombarded with everything I didn’t want to know about it at every fucking turn in at least two languages on every possible platform and outlet. For months.
And today, it was Too Fucking Much.
The Norms have started panicking in earnest and I just do not have the energy left to carry one drop of water for them or their fears.
See, I don’t like to brag, but I don’t ever have the privilege of walking through the world feeling even modestly invincible — not against health systems which are not set up for patients like me, with chronic and complex needs, during the BEST of times; not against economic systems that push those health systems farther out of reach during the BEST of times; and certainly not against microscopic invaders lurking anywhere/everywhere, ready to wreak havoc in my immuno-modulated body.
Maybe it’s maybelline, or maybe it’s the lifelong complex trauma history, chronic illnesses, a good eye for patterns, chronic pain, a chemo-customized immune system, being a long way from home, going through menopause and puberty at the same time…
Maybe it’s all of it, or none of it.
But from the first mention of this novel threat (which came in addition to the annual seasonal influenza threat, against which I cannot be effectively vaccinated), the question was never really
“oh no, what if I get Corona?” or “what can I do to keep from getting Corona?”
the question was always just
“How long until I get this?” and “Will this be one I can get better from, or the one that gets me?”
I don’t have the luxury of panicking.
Anxiety is the fear of fear, and panic is anxiety turned up to 11. You don’t panic in front of a firing squad; the inevitability precludes it. You might panic when a plane experiences turbulence and bounces around, but have you ever read survivor reports about what happens when one really crashes? It’s often eerily quiet, not screamy like in the movies, because once the uncertainty vanishes, so does a certain degree of the anxiety/panic.
And it’s not just me feeling stuck between damned and doomed. I WISH it were just me, so I could take my little whiny worry and wrap it up and bury it in a hole somewhere and sit on it until this thing passes, but there are so many others in the same or worse situation. Nicer people! People with jobs, and pretty smiles, and polite children, and bright futures! People who serve their communities, in spite of pain and limitations! People who are basically the polar opposite of me in every way, except they are also more likely to catch this fucking virus for no fair reason, and it could very well kill them.
So many valuable, vulnerable people out there who, in addition to all their other lacks, also lack the luxury of panic about this new threat. They can only add it to the stack of all the old threats — maybe build a cabin one day? Or at least a nice bonfire? I’lm brng mrfmrllws, I say through a mouthful of marshmallows.
In the meantime, I’ve muted my local grouptexts #indefinitely. I’m spending more time drinking (I mean, if these are the last days, I want them to be good ones), starting now. Well, 30 minutes ago, here’s mud in your eye.
I think self-congratulatory”social media fasts” are silly, but I’ll probably log in less for a bit — those who know me IRL are welcome to reach out directly in the meantime. I’m trying to avoid the public firehose, not real people who really matter.
I’ve been trying to remove a now-closed checking account from my PayPal wallet for about 6 months now. Every time I’ve tried to do it myself, their site says there’s a pending transaction and won’t remove the account.
Never mind that there’s not a pending anything anywhere.
Today I had a few extra minutes and decided to call and make them produce evidence of this mysterious pending transaction and remove the stupid account and the debit card associated with it.
Once I finally got a real human person on the phone (no small feat), “Melody” needed to verify my identity by asking me five SOOPER SECURR questions.
Multiple choice questions, because it’s very very important that I, and only I, can know the answers.
Question 1: “Which of these cities is associated with you?”
A) City You Used to Work in
B) City That May Not Even Exist
C) CIty You Used to Live in
Well, City A is associated with me, but so is City C. When in doubt, pick C. Correct!
Question 2: “Which of these streets is associated with you?”
A) A Street
B) A Street You Used to Live on
C) Another Street
Woo hoo! I think I might pass this after all. The answer is B for Bring on all the questions!
Question 3: “Margaret Maidenname was born in what month?”
Me: “Wait, who?!”
Melody: “Margaret Maidenname.”
Me: “I have no idea because MARGARET MAIDENNAME IS MY PARENTS’ GODDAMN DOG!”
Me: “I think she’s about 11, but even SHE doesn’t know what month she was born. How the hell do YOU know?”
Melody: “Ha ha, I’ll just choose ‘none of the above.’ Next question…”
Security Theater Game Over. Exeunt Omnes.
Tl;dr: PayPal never could produce a “pending transaction” on my account, related to these payment sources or any other, but they did finally manually remove them probably. I’ll check back in a day or two to make sure.
I couldn’t find an offical place (in the Instagram app or online) to offer these humble suggestions, so I’m committing them here in an attempt to move on with my life.
BTW, I’m synapsecracklep0p on iG (yes, that “0” is a zero). My feed is 85% baby photos, 10% things I saw while thrifting, and 5% my Tysabri infusions count-up. Tl;dr MUST SEE TV.
Allow limited hyperlinks. Nobody wants Instagram (hereafter referred to as IG) to get all spammed up. We see enough sneaky pitches for body wraps, Romanian porn, and “get 363 new followers” (and I hope you’re reporting them, too).
But there are times when linking would really help broaden the conversations we have on IG. I would like to see the ability to link to images from my IG archive (most restrictive) or to other people’s IG archives (less restrictive).
Of course, they could blow the lid off and make links to any website clickable (unrestricted), but that’s not where I’d want to start.
Alternatively, it seems like IG could offer to make whatever-kind-of-links clickable when they’re from people you follow (most restrictive) or when they’re from people who follow you (less restrictive).
Make our past photos more findable. Every day, it gets harder to find past pics. Don’t make us feel like we’re sharing into a black hole! Surely there’s some way to shortcut back in time — by month? by year? by x00th pic? — when scrolling through our own (or others’) pics.
Make it easier to follow hashtags. This would be so useful for photo challenges or to learn about new topics. You could reinstate RSS for hashtags — I’d be okay with that, because NewsBlur makes it so easy to keep a finger on the pulse. But it would be lovely, too, for the IG app to offer a native way to do this as well.
Make it possible to group the people I follow It would nifty if I could group my follows by the affinities they naturally fall into, such as my twomom families, my MS family, my meatspace friends, my family-family.
Finally, and most importantly, make our pics and info portable. Most of us don’t have any plans to pick up and leave, but we also don’t want to lose all the time, effort, and heart we’ve put into sharing our memories. Offer us an easy way to download our pics with their captions and basic metadata, like when they were posted. Bonus points for even richer data, like number of likes.
Are you an IG user? What improvements are on your wish list?
Those who are at risk are customers of Anthem Blue Cross, Anthem Blue Cross and Blue Shield, Blue Cross and Blue Shield of Georgia, Empire Blue Cross and Blue Shield, Amerigroup, Caremore, Unicare, Healthlink, and DeCare.
Lovely! I’ve been customers of 2 of these. (But I guess the hackers already know that.)
Time to ruin my credit so nobody will want to steal it? Mall’s open until 9pm!!!