Trouble was, the subleaser wanted in on 1 October, and I was scheduled to leave Thursday evening and not get back 'til next Sunday. The first. Panic ... did not exactly set in, though stress certainly did.
Over the course of Wednesday I:
- Got a couple of friends to hang out with me Wednesday night and help finish packing, which otherwise would have been a) slow, b) frustrating, and c) generally sad-inducing.
- Acquired a small storage unit on short notice.
- Decided to just call in exhausted on Thursday due to not sleeping well (this is not a lie), and just go in for my early-morning meetings.
After all that I made it back to my basement apartment about an hour before I'd expected, with plenty of time to pack for ten days up north. Indeed, I managed to leave about an hour early to get to the airport, so I'd have plenty of time to grab a leisurely dinner before my flight.
Except that when I got to the airport I realised I'd forgotten my viola, which would make it difficult to a) practise and b) have a Skype lesson on Tuesday. So, half an hour transit back out to the apartment and half an hour back to the airport, and there went all the extra time I'd built in for dinner. I did manage to grab something to eat anyhow but it was a close thing.
I then discovered, once I got here, that I'd left my glasses at home as well. This is deeply frustrating, as it rather limits my late-evening options. It's also gonna make things interesting if my contacts self-destruct again.
(I briefly thought I had lost my Nexus card, but it turned up again. Still not sure what happened there. I'd blame my lack of glasses except that I generally find things by touch and not by sight, so.)
But the weekend was pretty good: reconnected with Erin, went out to a couple of events to start trying to make connections in the local kink community, generally got a little more sociable and a little less stuck in my own head.
And today's the equinox, so maybe the horrificness has just been the fault of summer and it'll start to settle out now. I can hope, anyway.
They've been at it for a couple of hours, and have made vastly more progress than I was able to make in quite a few hours of manual digging. Part of this is that they've got a small electric jackhammer, but it's clear that a fair bit of this is simply that they're better at it than I was.
Which just goes to show that "unskilled labor" involves skills too.
( Rosh Hashanah )
It's genuinely disorienting to encounter all these spaces where I don't have to educate anyone or fight to be seen for who I am. Other people have already done that work, and leaders have clearly been receptive to it. (Rabbi Lippman is queer, but I don't assume that cis queer people will be welcoming to or understanding of trans people, especially nonbinary trans people.) I get to just show up and be a human being in human community. What an immense privilege. What a gift. Honestly, that might be the thing that gets me to stick with this—just the pure pleasure of being in a place where I didn't personally have to claw out a space for myself.
Josh met me and Kit in the park and we walked for a while (GMaps Pedometer says I walked 3.2 miles today, most of it pushing a heavy stroller with a heavy toddler; my feet and arms are very tired). I teased him that he should be glad I didn't make him meet the rabbi. But this is my thing, really. Maybe it's my latest three-month hobby. Maybe it'll be more than that. We'll see.
Maybe he would be diluted in a larger group? There were only four of us. And neither I nor the other two guys, whom I know from SF book group, are very good at grabbing the talking stick. Still Cameron seemed weirdly controlling. I think more than half the time was just Cameron talking, and he didn't leave spaces where other people could start talking if they wanted to; he'd call on us, like, "What did you think of it? Was there anything else that you liked?" And whenever anyone spoke up without being called on he'd say something like, "Yes, go ahead." He'd actually interrupt a person who was speaking in order to give them permission to speak. When he said he was a history teacher I thought, that explains it.
On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!
Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.
I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. loracs and I will be the only ones to notice.
I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.
After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.
On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)
On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.
Meanwhile Tangerine, still hungry, orders some pizza. He heads out the front door in the hope of intercepting the pizza before anyone else (Melanoma, say) can get to it. There he encounters Oliver the Paper Boy dropping off another newspaper to add to the growing mound of papers composting on the front porch. Sensing a potential audience, Tango begins a tirade on the virtues of whiteness. Oliver is not delighted by this.
Oliver is still quite young, but he's old enough to recognise bullshit when he hears it. He responds with a counter-argument as the pizza delivery person arrives with Tangerine's breakfast.
"Hey matey, do you want this pizza, or would you rather just stand there arguing with the paper boy?"
All of a sudden, the pizza is forgotten as Tangerine, Oliver and the pizza chick are overcome by an irresistable urge to perform The Dance Of Horrified Greeting for... a repair person?
Startled awake, Melanoma concedes that yes, maybe the TV could do with a tune-up or something...
Wait, what? That's not a TV repair tool!
WOOOP WOOOP WOOOP!
WOOOP SCHLOOOP SCHLUUURRRP! There goes the TV...
Tangerine bawls his eyes out, weeping for his lost TV, his lost innocence, his missing personality. Without a TV, how will he pass the time now?
He recalls his breakfast, still sitting out on the front porch.
Melanoma's response to the TV being reposessed is withering. "You idiot! You haven't got the brains God gave a pickled onion. I TOLD you to pay those bills. This is YOUR fault."
"Ah well. We'll always have
While Tangerine (who has, you may recall, claimed the only couch in the house) sleeps, Melanoma is overcome by hunger pangs and visits the local diner.
But wait! What light through yonder window breaks? Is it Juliet? No, it's a Zombie-American rising up through the footpath while Melanoma dines inside.
She finishes her meal and emerges from the diner, only to be accosted by the zombie. She is not in the mood for this shit.
"Arrrghh, mmbblgggghhhrrrr! Hey lady, those are awfully tasty looking thighs you have there!"
Melanoma snorts disdainfully, spins on her heels and heads straight back into the diner for another cuppa. Clearly it's gonna be one of those days...
It seems that the Zombie-American is still waiting for her when she's done with her second coffee. Impressed by her unbelievable body odor, the zombie tries to make friends with her. This is not easy when one's first language is groaning.
Zombie: "Okay, arrgghh, mumbbllerrggh, seeya round!"
Melanoma: "I hate my life."
Mel decides that this unpleasant encounter might as well be useful for something, so she grabs a pic of the Zombie-American as she departs, with the idea that she may post it on the blog that she's just starting up.
Unfortunately, Melanoma's photography skills are at approximately the same level as the zombie's hygiene skills. Her blog's certainly not gonna go viral this week.
*(Edited to add: I suspected it was too good to be true. Of course the shit hit the fan on about 3 different projects as soon as I finished posting this, so, we'll hope I get out on time.)
Cards: mostly sent; I ordered 50, and carefully winnowed down my list to that number, but they actually sent me extras so I still have a dozen or so I can send (probably next week; gmar chatimah tovah!).
Honey cake: baked last night.
Challah: 4 small loaves (2 raisin, 2 plain) currently on second rise to bake later today. This year, I used the King Arthur recipe that I printed out last year but decided against for some reason. I made a double batch since it claims to make 1 9-inch round, let the dough rise overnight, and it looked beautiful this morning. Aria was super interested in the dough as I was rolling it into strands for coiling. "Cookie! Pizza! I hold it? I hold it?" I told her she'll be big enough to help me next year.
12lb. brisket in fridge, waiting to prep for Thurs afternoon. Sorry, ablock, I fear my brisket-recipe allegiance is permanently switched! even though the simmered-in-wine version will forever smell like the essence of Rosh Hashanah to me.
Matzah ball soup: also tomorrow (using stock from freezer)
- brisket potatoes & carrots
- tzimmes (I actually found frozen diced butternut squash at Not-Our-Usual-Supermarket)
Guests: 1 (maybe 2?) Thursday night, 1 Friday night
Shul: by myself tonight (6:30pm) and tomorrow morning (9am); with Aria on Friday. She saw me put on a skirt this morning (since I'm going straight from work) and said "Mama you go shul today! I go shul!"
Still to review: Shacharit davening for first day (ack) and Haftarah. I went over the davening with the rabbi during Sunday school the last two weeks and it was OK - Yom Kippur is more direly in need of practice, but first things first.
Kittel: try on tonight, bring tomorrow morning.
Shanah tovah u'metukah!
The Travails of Tangerine Hitler and Melanoma Hitler
Since this supposed to be a cathartic exercise, it wouldn't do to have things go too smoothly for Mr & Mrs Hitler. I've set them up in a basic starter home, but removed a few, um, optional extras. For example, their house has no lavatory. It also lacks a fridge and has no beds. But they have a couch and a TV, so surely they'll cope, right? Lets find out!
My self-imposed rules are this: the sims themselves set the pace. Most of what they do is entirely generated by them. If they have wishes, then I'll attempt to fulfill them (or at least, the wishes that appeal to my sense of whimsy). If they seem to develop an interest, I may nudge them further in that direction; and I'll occasionally push them into going outside and saying hello to other sims in the neighbourhood. The rest is up to them. Lets see what happens.
As soon as they arrive in their new abode, Tangerine makes a beeline for the bathroom mirror for a nice inspiring round of pose-a-rama, while Melanoma chats up the local Furry then checks out the offerings on TV:
This seems to be a bit of a theme for Tangerine. Whenever he's bored or unhappy, he immediately decamps to the bathroom to admire himself in the mirror. When he's within eyeshot of it there is no dragging him away from its magnetic allure. Who needs cocaine when you can admire your own reflection for hours on end?
Eventually the thrill wears off a little and he rejoins Melanoma on the couch. She's starting to feel a bit tired and cranky by this time. "Whyever did it seem a good idea to buy a house without beds?" she wails. "All we have is this crummy old couch!" Tangerine rudely ignores her.
Before long Tangerine is feeling a bit sleepy as well. Being a caring, sharing sort he tells Melanoma "This is MY couch! Off you go. I wanna get some sleep now."
This is not received well:
"You're a charmless, mannerless peasant!"
"...And your genitalia are charmless, too!"
Overcome with fatigue and humiliation, Tangerine proceeds to wet himself...
...And then fall asleep in the puddle on the floor.
Does Melanoma succumb to temptation and give him a good swift kick? Does their relationship survive this contre-temps? Tune in for the next thrilling episode and find out!
Anyway, so Cambridge (the College) has moved, and unexpectedly postponed the start of classes for a week due to what seem to have been electrical and networking issues, so classes only just started. (I did various Useful Things at home during the week, but, confronted with an extension of my vacation, I also shrugged and vacated some more. I went to Nut Island one day, and then World's End over the weekend, after which I had the entertaining experience of watching the fog roll in on Nantasket Beach. Rarely does it happen so clearly. Also got to watch the sunset at the endpoint of Hull. Mmm. Waves.)
Getting back to the point, here, it's already become clear from three days' worth of evidence that if I leave campus at a certain point, I will miss my useful bus home. It's not like I'm doing it on purpose, it's just, the way class and the subway and the busses work out, I barely miss the last bus before they transition from every-20-minutes-or-so, and hit the valley of the one bus that's a 40 minute wait. (After that they're every half hour.)
Since my various travels of August and September disrupted my gym routine (and then I was sick for a few days), and I haven't gotten back into it, what I have been doing lately is walking more. Running into this bus valley enables me to mutter and, rather than waiting in irritation, I stop by the grocery store/food co-op, and then am able to walk 3/4 of a mile or so until the next bus comes. (The way to do this is to walk until I see the inbound bus coming, at which point I stop at the next bus stop and wait for the outbound return, because to be caught between bus stops would be *annoying*, yo.)
In this particular instance, I had just stopped at the bus stop and was (I admit) looking at my phone when a guy coming out of a cross street whammed into the woman driving on the main street, right in front of me. (Durnell Ave at Washington St. No one cares but me.)
( More detail than one needs on an accident. )
So! Good deed completed, I left and went down to the bus stop with a bench, and hung out reading until the bus came.
( Waffling over classes. )
I spend a lot of time on, and am a volunteer moderator for, several Stack Exchange sites. (Mi Yodeya is one of them.) SE has a banner ("top bar") that is the same across all sites. It contains notifications, information about the logged-in user, and some key navigation links. For moderators it contains a few more things relevant to that job.
Until recently it looked like this (non-moderator view):
The red counter is the inbox (waiting messages) and the green one is reputation changes. If there aren't any, you just get the gray icons that those alerts are positioned over. If I were a moderator on that site, there'd be a diamond to the left of my user picture and a blue square with the flag count to the left of that.
They've just changed this design. (Well, the change is rolling out.) Here's what it looks like now (for a moderator):
The most important links for moderation are the last two things, the diamond and the blue box with the number (flags). They're on the far right, where they're less likely to be seen for various reasons. (Non-moderators don't get those indicators.)
In the old design, those moderator indicators -- which are important -- were toward the center where they're easier to see. Also, all the numbers were a little bigger and easier to see.
When this was announced there was a lot of immediate discussion in the moderators-only chat room, during which I got a little upset about the reduced usability, especially those moderator controls -- which had a good chance of being scrolled away in a not-huge browser window, because SE doesn't use responsive design. After I calmed down I wrote a post on Meta about how this was going to make it harder for me to do my volunteer job, particularly with vision challenges. I expected to get a few sympathy votes, some "get a bigger monitor" snark (which wouldn't help, by the way), and no results.
That post is now one of my highest-scoring posts on the network. And I have a meeting with the product manager and a designer at SE next week to demonstrate my difficulties in using this in more detail.
Meanwhile, I've gotten some help with userscripts from some other moderators. It's hacky and a little buggy and it slows down page loads and I have no idea how to adjust some things, but at least I can see my notifications and the moderator stuff is in a better place. It'll do for now.
I sure hope I can get them to bake some of this in, though. The page-load delay is a little disconcerting as stuff jumps around on the screen. (Also, userscripts do not work on my Android tablet.)
Beyond the immediate problem, though, what I really hope for is to find some way to raise a little awareness that usability is hard, designers are not the users, there are all kinds of people with all kinds of usage patterns and constraints, and you need to somehow, systematically, figure out how to design for the larger audience. That's going to be the hard part.