Like many contemporary philosophers, Xunzi assumed that the dead are just that – gone, from us, from life, from existence. But Xunzi did not imagine that this stone cold fact signified much. Fact pales before desire and desire wants translating into action, into doing. In early China, one form of doing was the soul-summoning ritual. Upon the death of a beloved, the bereaved would take to the rooftop to beg their dead to return – ritually pleading, “Come back!” – no matter how impossible one knew this to be. Because, Xunzi might say, the longing is the thing. What matters most is not that our dead cannot come back to us but the helpless, hopeless, and most important desire that they could. The wish too is a fact and it is one of the more exquisite human facts, the felt power of our longings to go on a little longer with those we love. If we are not to be false to this more important fact, we need somewhere to go with it, to give it its due, and the rooftop seems as good a place as any. As does the graveyard, digging through layers of rock to make a place that is not a hole.
from Amy Olberding
Some lessons are hard for me to learn. In my first chemistry class we watched a safety video that repeatedly proclaimed “hot glass looks like cold glass.” 20 years and 8 chemistry classes later and I’m still regularly burning my fingers on pyrex in the kitchen.
Yesterday, I worked several hours while the intensity of a migraine gradually increased. I was trying to be ready for an important meeting I couldn’t reschedule and trying to make up for previous days lost to migraine. I ended up missing the meeting and leaving myself unfit for work today.
When a migraine attack begins, a patient is advised to take a triptan as soon as possible. Delaying reduces or eliminates effectiveness. But! Taking more than 1-2 per week leads to medication overuse headache – where the migraine always comes back as soon as the drug wears off. Even a one-off use increases the likelihood of another migraine shortly afterwards, so I have to rest for a full 2 days after taking a triptan or I induce another attack.
Any day I have a migraine is lost time. Even when the pain is mild and I don’t take a triptan, I’m quite limited in what I can do, both because of the symptoms of the migraine and because not resting almost always makes the migraine much worse or longer.
The calculus of when to take a triptan is hard, especially when you get many migraines.
If a migraine is going to be short and the pain relatively mild, I shouldn’t take a triptan. But I don’t know either of those things when a migraine starts. I don’t know if I’m going to have level 4 pain or level 8 pain, if it’s going to last 5 hours or 3 days. I know I’ll have at least 2 migraines in a week; I know I might have 7. I can’t take a triptan for every migraine. I can’t risk the agony (and potential ER visit) of not having a triptan option for a bad migraine. I know that the longer I wait to take a triptan, the less it helps, but that breaking even a days-long migraine enough to rest deeply can interrupt could become a weeks-long attack.
So, if I take a triptan for a migraine, I lose at least the migraine day and the day after. If I don’t rest both days, I will then lose at least an additional day. If I don’t take a triptan for a migraine, then I might lose one day, or I might lose weeks.
I made bad decisions this week about triptans, and I made bad decisions about resting this week.
On Wednesday, I woke up in the middle of the night with a migraine, bearable. I laid awake for a few hours until the worst passed, then slept til morning. I didn’t realize it then, but I should have taken a triptan right away.
I woke feeling better, but not well. I got to work even though I was foggy and stupid and struggling to accomplish anything. I should have spent the morning resting.
I was quickly overwhelmed with fatigue and spent much of the afternoon in mild pain and unable to do much but nap. I should have taken a triptan that afternoon.
Thursday, I woke at my normal time in manageable pain, but slow and foggy again. I started working and the pain escalated quickly. I had a meeting that day I didn’t want to cancel and I had work to do to prepare, so I continued on, slowly. And then it was too bad to stay upright and I’d had a migraine for 2 days. I should have taken a triptan.
I rested for several hours while the pain escalated and finally, finally, took a triptan. The pain decreased and I slept for much of the afternoon and all night.
And now it is Friday and I am still in a fair amount of pain and I cannot do much at all today without causing things to be worse.
So, I will put aside my frustration at the slow pace of my PhD and finding answers to the questions I’ve dedicated myself to. I will put aside the disappointed expectations of my advisor and colleagues. I will put aside my fears of never being able to hold a job or support my partner financially. And I will rest.
I planted a Hippeastrum cybister back in November. What I didn’t realize at the time was that it had a fungal infection. It is blooming today, but anemically. It hasn’t put up any leaves at all yet.The bulb is gradually softening as the fungus eats it. The amaryllis fought hard to bloom before the fungus got too far.
This is the second H. cybister I’ve tried to grow and the second that immediately succumbed to a fungus. I use sterilized soil and other plants in the same soil haven’t suffered, so I’m guessing I need to use better bulb suppliers. Or maybe H. cybister is particularly vulnerable to fungal infections or needs different care than other amaryllis’ I’ve cared for.
I’m going to try to rescue this one at the weekend. I’ll chop the stem, unpot it, cut away any infected parts and try to sterilize the surface, then plant it again in newly sterilized soil and pot.
It’s really weird how many of my neighbours who own their homes talk about neighbours who rent like they’re just passing through and are a detriment to the neighbourhood. They also treat them worse. When there’s a problem with the renter-residents, they call the bylaw officer or the landlord. When there’s a problem with an owner-resident, they talk to them.
Often resident-owners say renters are bad because they don’t contribute to the neighbourhood, they’re too short term, etc. But renters aren’t temporary nuisances! They’re people making homes in their neighbourhoods. Many of the renters have been here longer than the owners!
I get so mad when resident-owners speak more highly of the absentee-owners who landlord or leave their houses empty than they do of the renter-residents who’ve made their homes here for more than a decade.
It’s almost like it’s about class and wealth protection rather than community and home and neighbourhood.
Pandemic excerpts from from my 2020 journal
February 5, 2020
They’re doing lots of quarantines for coronavirus. I wish we took the flu so seriously.
March 15, 2020
Coronavirus – covid-19 – has spread basically everywhere now. It’s definitely a disease of the old and infirm, though young people aren’t invulnerable. I’ve been self-isolating for a few weeks now. S & Q are too and we can all be in an isolation pod together. I’m not sure how this is going to work. How long can things go on like this. I’m hopeful this will be our impetus to throw off climate change & capitalism.
I’ve felt useful at work as everyone switches to remote and I’m all about those tools. I think I’ll try to set up a [sub group] lunch on Jitsi.
March 16, 2020
Pandemic continues and nowhere is really prepared or taking proper precautions. Trying to support [doctor friend] before it’s bad.
March 22, 2020
When I look at what we know about covid-19 and its spread, I feel quite worried. We really do need to shut things down and do things very differently for at last a year. Maybe longer. But we’ve built a very fragile world, very delicate and interconnected supply chains, and insulated many powerful people from consequences – electoral or otherwise. I fear that people will be forced to go back to “normal” far too early, for the “economy’s” sake. And then people will die and the economy will fall apart anyway – though maybe not so much for the rich.
I call my electeds most days now, though I’m not sure what good it does. I’m very afraid of what’s going to happen in the US. They’re so unprepared and are writing laws that will destroy the country, just hoover up everything of value for the wealthy.
[Work] is nearly all shut down. I feel bad for [co-worker]. This is going to hurt her [project] and [supervisor] is pretty unavailable and doesn’t seem to totally grasp the scale of what we’re facing. Though who does?
I simultaneously worry that things will go back to normal – but worse and more unequal and hard for everyone who isn’t wealthy. And I worry that things will completely unravel and we’ll have farm shortages and trouble accessing basic goods and there will be violent social unrest with regards to climate change, etc.
But maybe we’re buying time.
March 30, 2020
I have asthma. If I get the rona and it goes badly, I’m less likely to be offered a ventilator at the hospital than someone else, all else being equal. That makes sense, right?
But who has asthma? Black people are way more likely to have asthma than white people. Why? It’s not some biological failing of African-Americans. It’s because black people in America are forced into shit housing along polluting trucking routes.
Our doctors have to make decisions about who gets limited resources. Their best way to decide is “who’s most likely to survive.” But who’s most likely to survive isn’t random and it’s not just about health. It’s about real, existing exploitation and oppression in our society.
Then, also, doctors aren’t very good at deciding who’s most likely to survive. Partly because we don’t understand the virus very well and partly because doctors are shockingly ignorant about the conditions and diseases many (disabled, women) have. My GP didn’t know what triptans were.
The, also, which people get sick at all isn’t random. It’s elderly and disabled people warehoused in institutions instead of living in community. It’s poor people who can’t afford to stay home. It’s people whose jobs don’t give them adequate rest, who don’t have time or money for healthy food. Who live in neighbourhoods you can’t easily and cheaply exercise in. Who suffer health problems related to the stress of [Adverse Childhood Experiences] or racism.
Then, also, doctors (or the politicians driving doctor’s) decisions aren’t always based on survival, but what they imagine a good or meaningful life to be. People with cognitive disabilities are excluded from care in Alabama. We’re straight up saying that we’re valuing smart people over stupid people in our society. Nothing to do with survival chances. The same with doctors who choose to save patients with children over those without despite that having nothing to do with survival or life quality – and that childless people make the world better.
It’s impossible that our biases don’t bleed into who we keep alive and who we let go. And so when you’re in a group already who people are happy to kill – with force or negligence – this is very scary and infuriating.
As a disabled person, so much! Because many of us are more disabled because of doctors and their shitty treatment and biases. Maybe we deserve more intervention because we’ve already lost so many QALYs – not fair for the well to get so many more!
March 31, 2020
The exponential growth of the pandemic continues. I’m going to keep calling my politicians because I think the possibility for a better world coming out of this must be pursued. Because I’m too dumb and scared to just accept disaster capitalism.
April 8, 2020
Pandemic continues. Effects on my lucky life continue to be minimal. [Partner] and I got some handmade masks on Etsy and we are more careful about hand washing and sanitizing surfaces. I’ve switched my afternoon walks to early morning to avoid crowding around the [trail] and on the sidewalks. Our meal planning is slightly trickier because we often have missing groceries, but [meal delivery service] and [restaurant delivery] fill in the gaps.
Strange to have such a sense of normalcy as the world reshapes itself. Its a lot like my feelings about climate change in some ways – the the sense of my individual life being so normal as calamity is underway. But so different as well because people are taking the pandemic seriously. Governments are taking it seriously. America is still right fucked though. It is agonizing to see the world lurching toward fascism and the worst of neoliberalism. And yet instead of organizing my friends to call politicians, I hope [a bunch of politicians I don’t like] all die of covid-19. Ah it is so easy to be bitter and cruel and utterly unhelpful.
April 13, 2020
I don’t know what’s going to happen with the pandemic, but it doesn’t look good. People who know things have been warning about how fragile our economic system would be to something like like this pandemic or climate change. But we didn’t act on it and here we are, with nearly everyone suffering, the rich poised to steal the scraps, and the bougies just trying to hang on to what they’ve (we’ve) got. It’s ugly as fuck.
April 14, 2020
The post office in the US is going to fold if the government doesn’t drop that stupid rule about funding pensions 75 years out. [Transit service] here is in trouble. I wonder what’s going to be left after all this.
April 21, 2020
I had hoped to spend the afternoon planning and exercising and doing emails, but I think all I’ll manage is a nap and my (virtual) [doctor’s] appointment.
I wonder if going off [treatment] is going to fuck me up? I hope not. Would be nice to avoid [unpleasant aspect of the treatment].
I feel overwhelmed, but also like nothing matters. I feel worried about the changes the pandemic will cause, the disruption and collapse. I feel afraid of climate change. I want a garden and a book and nothing to be wrong. Probably I’d be upset about aphids then.
April 22, 2020
I had my appointment with Dr. T over the phone yesterday. He’s treated some covid patients, but says the hospitals are largely quiet.
Like Dr. S, he’s impressed with my improvement, thinks there’s probably nothing else to try right now, and hopes that I’ll see gradual improvement over time.
I am disabled it turns out.
Covid looks like the kind of disease where many will be disabled afterwards. Like polio. I would hope that would be part of a new push for disability rights, but I expect that the inequality driving the pandemic will lead instead to stigmatization of disabled covid survivors.
It is hard to believe how badly the US is handling this. I’m afraid for my family.
April 27, 2020
I wonder what we’re going to do if we can’t develop a coronavirus vaccine. A return to the city state? We need to be able to control travel at quite a fine scale.
Read about how dystopian fiction influences people’s politics. Let the hunger games begin.
May 20, 2020
Pandemic restrictions easing, though I haven’t changed much about my activities really. I did call and ask my neurologist if I could get a [treatment] appointment.
Bought a chest freezer this weekend. Pretty sure there’s going to be food shortages this winter. Folks at [store] weren’t doing social distancing and parking lot was packed. Burbs, jesus.
June 23, 2020
Pandemic continues. Still ok here in [province]. Quebec and Ontario struggling. The US is a disaster. I don’t know when I’ll see my friends and family again and that’s hard. I think my parents would fare badly and I wouldn’t even be able to go to them. In some ways devastating, in others, a relief.
June 27, 2020
Yesterday in my [virtual co-working] group, I started a sentence, “The good thing about covid … “. I saw some shock on others’ faces. A good reminder to me that the pandemic is actually a really horrible thing in the world and most people’s lives. My life has gotten better. That’s unusual and has both to do with [partner’s] financial situation and with my illness.
October 9, 2020
Trump has the rona. May have given it to half the presidential succession and Biden as well.
[Partner] has been feeling a bit unwell and I’m worried about my parents as well.
October 12, 2020
Thanksgiving today. I feel sad that I can’t and don’t have plans. Perhaps next year.
October 15, 2020
Got my covid results back – negative. Good. [Partner] too.
October 21, 2020
[Experiencing a lot of pain from condition with interrupted treatment due to covid]
December 9, 2020
Uncle L and Aunt D got covid. Recovering, but Uncle L almost died. Vaccines coming, but hospitals are starting to get overwhelmed.
December 30, 2020
I feel scared. Can’t get migraine under control enough [since treatment disruption] to work consistently.
I’m going to paint a room and listen to end-of-year music playlists.
Please send me painting advice and playlist recommendations.
Also, choosing paint colors is exhausting. If you have ideas for a room that’s south-facing but gets almost no natural light because of a giant retaining wall and trees and has a lot of big mirrors, I want them.
I bought a dormant Hippeastrum cybister back at the end of November. I potted it up right away, gave it just a bit of water to settle the soil, and tucked it in the basement closet for some cool, dry dark. I’ve been eagerly checking every few days to see if it had woken up yet.
And today it had!
I pulled it out of the closet, set it in a northwest facing window and gave it some water and light fertilizer. Now to watch it grow and bloom!