No regrets

A post about pain and its relative absence. Warning: boring! The last month or so have been an amazing window into the world of Much Less Pain. I would describe my last…. well since 2012 or so… since the ankle blow out and recovery year. several years of having this daily rhythm:

    * waking up: Pain about 7, move around and slowly unstiffen. slept 5 hours if lucky
    * morning: coffee! pain at 5 or 6. functioning! or maybe even sharp!
    * late afternoon: starting to wane. pain getting worse and I feel fuzzy
    * evening: Oh fuck this where are the pain meds… OR…. Kinda OK still at 5 or 6
    * bedtime: Oh fuck this where are the pain meds omfg. All the pain meds in the world. Pain at 7 or 8.

Last few months, increasingly so since last year’s surgery,

    * waking up: Just feelin’ ok! I slept 7-8 hours even! Pain like, 4 ish
    * morning: coffee! Woo hoo! Full speed ahead! Keen-minded! doing some tai chi! house work in between working! Pain at maybe 3-4, fabulous
    afternoon: Some more activity. I feel like I can go up and down the stairs for things. I can go out and do an errand. I can do something frivolous like take BART all the way to some remote station and work from another town’s library! Not to mention, swimming laps! Swimming like 400-900 yards at a time! gardening! feeling the healthy glow of exercise!
    * evening: I’m still able to maybe cook some food or do things or even go out
    * bedtime: OK the pain is back to a 6 or 7 and I’m smearing voltaren on myself and smoking a little dope but really it’s manageable.

As usual I am posting this because I was in the 2nd happy state for a good long while, maybe since January? But for the last week, I’m in a little more of a “flare up” state where I can’t go swim laps, I’m thinking hard about going up and down stairs to do laundry or go out for errands, Sitting up tires me out, my joints are burning, in the morning, just walking all the way across the (tiny) house seems like a lot. Ankles burning and stiff. Neck and arm on my bad side giving me trouble. Waking up in the night with pain. Work has to be my priority, then housework and doing very easy PT. Scaling back everything.

Sucks….

Perhaps I just overdid things because I felt so good. Or maybe it’s just chance. But, I’m bouncing back and determined to keep doing all my PT and strengthening exercises.

Goal, tomorrow go to the pool and don’t try to swim laps, just gently float around in the shallow end.

I feel super hopeful and not too upset about it – because I feel just *stronger* all around for all the exercise and activity.

The Hostility of the Helper

When others perceive us (disabled people) as being in need of help there can be a strange dynamic in play. They deny our agency, our perspective, seeing us as an obligation. They are forced, in their minds, to hold the door open or tie down our wheelchairs or grab our arm unexpectedly and try to steer us up the steps, forced by their concept of what is proper and even moral. It’s the right thing to do. They’re prepared to do their duty. “No, thank you” isn’t a possible answer to their concept of dutiful helping. The dark side of their duty is anger. They’re already mad, before we respond in any way to defuse or exacerbate the situation. Pre-loaded with dehumanizing forces. The undercurrent of hostility can poison the respectful interdependence that is possible between any people. They will perform their duty, and we the helped will perform gratitude. For survival, sometimes we have to accept hostile, angry, disrespectful help. I wonder how others think about this and how they keep their equilibrium, a philosophical distance or perspective maybe, and either move on or are able to change the Helper’s minds. The compliance that makes us one of the good ones while we may be burning with fury. It is no different from what most of humanity has to go through and most of us will meet it as we age.

In contrast, how much I appreciate open-hearted kindness. Moments of being treated just regular, without fuss, being seen, heard, listened to, being a person. Those moments wherever we find them from friends, family, people in our communities, or strangers, are a healing antidote, for us to treasure & keep in our core, against the hatred of people whose cruelty we have to swallow. What helped last night? The kindness of a “just regular folks” bus driver acting decent. Chatting with someone about their baby on the elevator. Hip hop dancers on the train. Reading Mc’s bus poems. Art and culture and . . . I’d maybe call it manners . . . all indescribably precious.

Rescued by Love and Magic

Well it finally happened — I ran out of wheelchair battery! I left the house with 21% and figured it would be fine. After getting groceries I was at 10%. A block from the top of Cortland (a huge hill that I live at the bottom of) the battery indicator suddenly dropped to 2% and then stopped me dead! I was laden with bags of groceries as I was shopping for my friend who is house-bound at the moment and doesn’t have anyone coming to help him till Tuesday. anyway, I sat there pushing the “on” button and going about 2 feet, then the battery would die again. I was probably cursing and distressed looking but I can’t even remember — I was so discombobulated.

A young couple walking by asked if I needed help. Incredibly flustered, I explained maybe i could coast from the top of the hill, or get in a cab. They said they lived just a few houses down and I could charge the battery, or they could push me!

We fiddle around to disengage the motor and I let the guy push me uphill for a block.

Y’all I was blushing. But it was so nice of them both.

At the crest of the hill the battery indicator suddenly said 4% and I was able to motor very slowly down the hill. “OMG thank you. What’s your name?” “I’m Magic.” I’ll say! “And your name?” “Um, I’m Love.”

I was literally rescued by Love and Magic today!!!!!!

Even my bad adventures have a good side sometimes! I’m a little teary eyed right now and going to lie down and experience some feelings while my powerchair battery charges up.

Feeling pretty decent!

Not to jinx myself by saying this but I feel pretty good lately. So many times it is routine for me to wake up just crushed by pain and exhaustion. I have to lie there slowly moving everything until I can get up. Even times when I had painkillers by the side of the bed. Lately I wake up and just spring into action. I might be a little sleepy or fuzzy headed and sure there is some pain but it is ignorable like a level 3 or so of pain, and a little mild activity around the house or a few minutes of tai chi unstiffens my spine. Hands hurt, knees hurt, ankles, etc but it isn’t bad, I’m good for any amount of walking around the house, I can recklessly go down stairs and do a load of laundry without that being the one damn thing I do with my body in the day.

What is going on! Why do I feel so good! It’s so nice.

That, and every day, I can just go out and do stuff, errands or a bigger excursion across town, without having to ration it out, multiple days in a row! Will this be the winter I get through without a giant flare-up?

New coffee holder for my powerchair

I had a pretty nice bottle holder for a bike that fastened onto a little bar on my powerchair, with a velcro strap, but it was not firmly fastened enough and would slew sideways. Then while it was sideways I went through a narrow doorway and scraped it right off, breaking the strap and the doohickey that attaches the strap. I’ve had my eye out for a new one for a couple of weeks.

Today I picked up the perfect thing, a bottle cage holder attaching gizmo, called a Minoura BH100 . It is super perfect – you can change the angle, it clamps on firmly and yet has a quick release. That gives some little bolt holes for fastening on a bottle cage. Perfect as this means I don’t have to try to drill holes in the frame of my chair.

I had two choices of cage, and went for the slightly less sturdy option simply because it seems a little more flexible for my metal travel mug.

Which is also perfect by the way . . . I like these 10 oz Chantal travel mugs. Not plastic, very sturdy, easy to clean, can open it with one hand by pushing the button on top and close it again with the same button so it’s ergonomic and also easy to deal with while driving your chair around.

OK, I realize that means I spent 55 bucks on fancy gear but I love always having hot tea or coffee with me. Nice while taking the bus or doing errands. Saves me buying coffee at times but other times if I’m out and buying a drink I can fill up my travel mug. Very handy!

Other stuff dangling off the chair: I have a “baggolini” that fits perfectly on one of the arms, and can be worn facing inside (I have several inches to spare between me and the arms even on the smallest Model CI – I do wish they had an even smaller narrower size.) This is going to be modified soon to have quick release buckles and better adjustability, because I need it to buckle separately with 2 straps over the arm in different places and it would be nice to be able to easily take it with me. This might benefit from expert help from someone better at sewing than me.

Underneath in the basket thing, which still rattles though I keep trying to add foam and tape to muffle the sound, I have a pouch to carry the charging cord and a spare pen and some duct tape. And also a tiny camera pouch velcroed around a slot in the undercarriage with emergency supplies (money, tampons, handkerchief, inhaler, allergy meds).

The back still puzzles me a bit. The protruding horns to hang backpack on are too shallow to fit the backpack plus shopping bags that they’re realistically going to have. So I’m thinking of trying to make them longer with sugru. The other problem in the back is that the slot for velcro for a cane holder interferes with the backpack strap action. If I have my backpack (or shopping bag or bags) hanging on the back, then put my cane through the strap, then need to get the backpack or bags off again, they get all tangled up. Ideally I’d like the cane to slot securely (while folded) just under the seat so I can reach down to grab it instead of reaching behind.

Bus encounter of the day

I got on the bus just before a very old lady with a walker and a fancy hat, as the driver let the ramp down first and it makes more sense to park my chair before her walker, kind of shrugging and smiling a little and she nodded and smiled back. I am so relieved she isn’t annoyed. She is very beautiful, her skin drawn very fine over her high cheekbones. On the bus she asked me some questions about my chair. How much… What was the cause… She would like one maybe but feels she needs the exercise. She has a nice accent, faintly British sounding but African or Caribbean, I can’t tell. I talked about my free tai chi class at the senior center. Another lady got on with a very large wide walker and could not get past. “Mira….” she said, grabbing the first lady’s walker to fold it. “No, you can’t…” The walker was not foldable because the basket underneath was full of stuff including Michele Obama’s book. No, no, I’ll go back here (I slowly trundle further back on the luckily uncrowded bus) and turn around, then there’s room. The first lady didn’t want to scoot down a seat. So the one with the large walker was now able to go around and sit next to her. “What does that mean, Cowwwwwmoooca?” “….?” Comooooooca over there on that sign? I peer around the front of the bus. “Cumaica. I ummmm I don’t think that’s a spanish word it’s probably from some indian language like the name of a place. Maybe it’s Mayan? Or like, sounds more like an um, Taino or Arawak sort of language? I don’t know” THe spanish speaking lady nods when I sum this up as “una palabra de los indios?”. Well you can find out. Tell me what it means. “Ok… ok yeah I can look it up right now. (thumbing my phone) I love the internet. OK uhhh it’s definitely gonna be a place name. Yes! It’s a place in Nicaragua.” But what does it MEAN. I don’t know…. I’d have to dig a little more. Another lady gets on the bus, sparkly eyed, about my age, in a cute scarf. “Oh! You! You are so pretty. You look so familiar. You look beautiful, just like my mother!” “Well what a nice compliment. I like that. Thank you!” “Yes, you could be from my village. It is not really a village but it was. In Ethiopia. Where are your people from?” “I can’t really, we don’t really know a lot but actually I’m researching my geneology and making my family tree. ” “Well you can get the DNA” says the Ethiopian lady. “Yes I’ve been thinking about doing it. I’m going to do it. Did you know you can go to the place, in the East Bay they have a big place, the Mormons, and look up a lot of that history. I don’t know why the Mormons have it but they do.” I chime in. “It’s because they think everyone in their records goes to their heaven.” “They really think that?” “I guess so.” “Well…. huh. ” We all laugh at this.

The Spanish speaking lady with the big walker has to get off the bus. We prepare to do our do-si-do dance in reverse but the bus driver is angry. She is grabbing the Ethiopian lady’s walker but she’s holding onto it tight. “No! You don’t have to do that. She is going to move back there and then she is going around. ” MA’AM…. MA’AM… YOU HAVE TO LISTEN TO ME says the grim bus driver lady. MA’AM YOU HAVE TO LISTEN. We are all arguing with the bus driver and trying to explain we have it under control. The bus driver wrestles the walker away from our dignified friend. “She took it. She didn’t have to do that. Well!” We all look at each other. The lady with the large walker gets off, ducking her head in apology at stirring up a problem. The bus driver gets back onto the bus with the walker. “YOU HAVE TO LISTEN TO ME” she scolds. “YOU SEE HOW EASY THAT WAS? YOU SEE HOW EASY THAT COULD HAVE BEEN? YOU ALMOST GOT THAT LADY FALLING OVER. YOU CAN”T BE TRIPPING THAT OTHER LADY.” “That isn’t how it was, you see, we were going to move back and let her get off.” she said firmly. I spoke up as well and said, that’s how she got on, we just moved for her and it was fine! But, we shrugged and let the driver keep talking. She finally went back to take the wheel. Behind the partition out of her sight, I stick out my tongue like a child, playing to my sympathetic audience so we can get a laugh out of our sadness. “What are you going to do. The truth is the truth.” says our queen. “She has a hard job. But she could have had more respect,” I say. We all laugh kind of like we just did at the Mormons’ database of heaven.

“My mother would like you.” our friend resumed. “The place where my village, not really a village, it is a PROVINCE, well, it was good, and the people were so friendly and good. Well, now, you could not even buy a house, a place just the size of this, this front of the bus, just so little, is 300 thousand dollars! You can’t live there.” “Well…. Someone sure got rich off of that,” I say. “They did, and you know who got rich from it…. ” No… who? “The ones who came to power. They got rich.” We all are thinking on that as the lady my age who looks like the 90 year old Ethiopian lady’s mom gets off the bus waving to us. “I am going to the doctor. The new one isn’t as good, because, they aren’t by the ferry building, so I don’t get as nice of a lunch.” We discuss the pleasures of the Ferry building and then I have to go. Sometimes the ephemeral nature of these bus friendships gets to me. I think that I will have a good old age someday. There will be moments of indignity but also we will have solidarity and a good time.

Exploring multisensory descriptions in Inform7

Over the past week I’ve been experimenting with different ways to make an interestingly playable game where the player’s point of view can be multisensory in various ways. So, for example, a character who is hearing and sighted would experience visual, sound, touch, and scent based room descriptions, while a Deaf character would not get the sound descriptions.

One way is to use Touchy Feely extension by Quantum Games. I ended up forking this and adding a few things to fix a couple of errors in the extension, and then adding more options as default descriptions for items. This extension builds in some commands like smell, touch/feel, listen, and taste. You can set the sound of a room, a person, or an object very easily just like you set the (visual) description.

With those rules, and a few others, I started writing rooms like this:

The Bedroom is a room.
The description of the bedroom is
"[if the player is sighted]A small room with white walls and some posters hanging up. The bed has a colorful striped bedspread and paisley sheets. The doorway is in the west wall.[end if]
[if the player is hearing] There is an air filter humming loudly in the corner.[end if]
[if the player is not sighted and the player is not hearing] A small room with a bed in it. The west wall has a wide doorway.[end if]"

The sound of the bedroom is "A loud air filter in the corner fills the room with white noise."
The scent of the bedroom is "The air in here seems very clean and fresh."
The bed is scenery in the bedroom. The description is "A soft, comfy bed. You give it an experimental bounce."
The pillow is scenery in the bedroom. The description is "A nice, soft, squishy pillow."
The bedspread is scenery in the bedroom.
The bedsheet is scenery in the bedroom.
The air filter is scenery in the bedroom.
The doorway is scenery in the bedroom.
The walls are scenery in the bedroom.

Things that are scenery aren’t described until you examine them. I wrote a general search command called (explore, or tap ) which conveniently lists all these “scenery” aspects of a room for non-sighted characters. Sighted characters have to examine them one at a time.

The problem with this method is that it is clunky and I’m repeating various elements of the room description. Ideally, I’d be able to replace a bunch of Inform7 behavior so that:
– Each room (and thing) can have a visual, sound, etc description.
– The game checks if the player has those senses
– The game concatenates the various sensory descriptions appropriately

This turns out to be difficult. I got into reading the Standard Rules (which, from the Inform7 IDE, you can see as an extension) and then realized what I wanted to do was basically happening in the Carry out looking (this is the room description body text rule): section of code. I thought maybe I could hack in a check on the sound of the room and print that.

But! This code refers to the Inform6 core of the game, with

To print the location's description:
(- PrintOrRun(location, description); -).

I tried copying THAT and doing something like PrintOrRun(location, sound), which didn’t work because location and description here are constants from Inform6, I think.
Not sure how to pursue this further. Maybe in future as I get more familiar with the guts of Inform.

So, I tried another way. I suppressed the room description body text rule like so:
The room description body text rule is not listed in any rulebook.
And copied it and pasted it into my example game with a slightly different name.

Carry out looking (this is the room descriptions body text rule):
if the player is sighted:
if the visibility level count is 0:
if set to abbreviated room descriptions, continue the action;
if set to sometimes abbreviated room descriptions and
abbreviated form allowed is true and
darkness witnessed is true,
continue the action;
begin the printing the description of a dark room activity;
if handling the printing the description of a dark room activity:
now the prior named object is nothing;
say "[It] [are] pitch dark, and [we] [can't see] a thing." (A);
end the printing the description of a dark room activity;
otherwise if the visibility ceiling is the location:
if set to abbreviated room descriptions, continue the action;
if set to sometimes abbreviated room descriptions and abbreviated form
allowed is true and the location is visited, continue the action;
print the location's description;
if the player is hearing:
say "[sound of the location][paragraph break]";
otherwise:
say "[feel of the location] [scent of the location] [taste of the location] [paragraph break]";

Because I’m not using the “print” function the sound and other sensory qualities of the room are described under the actual room description. That might be OK but now I need to learn how to elegantly write a room description that is broken out into visual, sound, and other qualities. I also need some kind of bare bones description that doesn’t show to the player unless the player character is deaf-blind. This will take some practice to learn to write well, and some more refining of how I show which bits of the descriptions.

Note that I will probably be adding in low vision and hard of hearing (by taking the visual and sound descriptions and munging them a bit.)

Building accessible infrastructure into writing and coding style

As you may be aware by now, faithful reader, I am obsessed with my game, which is set in the Bay Area on and around the BART train system. It is science fictiony and magicky, with time travel and weird stuff abounding. I set out with the intention that the player should be able to pick a mobility level and sightedness, possibly in elaborate gradations but for now, at a minimum viable level, the player can choose to be walking or a powerchair user, and blind or sighted, in any combination. For the powerchair character, they can’t do stairs and that’s about it. The blind player (simulated at this testing phase by providing the player a pair of wraparound mirrorshades) will have the “look” command replaced by listen *(maybe) or all room, object, action, and NPC descriptions will have non-sight-based descriptions.

Just as a note, I have not written the system yet for cane tapping but that will likely be integrated.

I am finding it interesting to try out the alternate description route. For example here is a super easy case where the description is written to make it very flexible, with only one word difference in the description:
The description of Calle 24 Northwest Corner is "A busy corner at a busy intersection. You can [if player is blind]hear[otherwise]see[end if] a steady stream of cars, buses, and people passing by."

Or, a little bit longer example,

A flower seller is a person. In Calle 24 Southwest Plaza is a flower seller. The description of a flower seller is "[if player is sighted]A short, smiling woman in a baseball hat and a red checked scarf pushes her wheely cart full of roses and carnations. Her jacket has a ladybug pin.[otherwise]You can hear a short woman just next to you, fussing over a metal cart.[end if]".
Every turn when the player can see a flower seller:
say "A flower seller [if player is sighted][one of]beams at you with a huge happy grin[or]watches the people passing by[or]smiles as she stops to talk with a friend[or]offers you a little bunch of carnations tied with string, saying 'Flores para ti?[otherwise]calls out, 'Flores!'[or]'[or]shares a coffee with a friend, chatting[or]fusses over her bunches of flowers, arranging them nicely[end if][as decreasingly likely outcomes]."

It becomes clear to me that I have to train myself to structure the experience of the reality of the game in particular ways. I might establish a convention (enforced with tests) where each thing defined in the game is required to start with a description for the blind point of view character, then have a description for the sighted. Each clue for the puzzle needs to be playable both ways, as well, and both should have a richness and depth of experience that makes the game fun & action compelling, hinting at possible avenues to explore. So, it will affect how I design the puzzles and clues as well as just some sort of “layer of extra text” to think through. One result is that talking with other characters will likely be more important than it might have been otherwise.

This shows very clearly how important it is to design an environment (whether it is a game, a novel, a class, a web site, software, a real life building, or a city street ) with the point of view of different people in mind. Having written only 6 sample rooms and couple of NPCs and objects and their behavior, I’m very glad that I’m doing this now, and not trying (as so many designers, programmers, and architects do) to staple on a half assed ramp or some probably flat braille a month before finishing a 2 year long project.

Triage day in a couple of ways

Work had a lot of bug triage today among other things but then after work I went off to the 3rd of 6 classes in the Neighborhood Emergency Response Team training. It was triage day at NERT class too. We got a video on pandemic flu, the gist of which was, wash your hands and cover your mouth when you cough (hilarious electronic music, closeups of a person coughing, freeze, zoom in, turn it to photo negative or some wacky filter effect, cut to other person giving serious side eye to the coughing person as if plague was leaping right the hell out of their mouth!) Then START – Simple Triage And Rapid Treatment. We went over some examples and then some people went out of the room to prep to be the rescue team and 20 others went up on stage (or whatever you call it at the front of a church) and arranged themselves artistically as disaster victims. The rescue team then came in to check them and tag them with triage tape (remembering to tear off a bit and pocket it for each person to record how many were triaged to where.) I will probably do some online practices for START triage (there seem to be lots of them!)

I enjoy the class as a sort of meta thing to think about, how they came up with the most basic possibly useful things to get across. Like 24 hours of basic training but for this very specific temporary purpose. What do you choose to teach? Is there any hope of cramming something useful into random people’s heads? Will it stick? In a disaster I think the more official first responders would want to mobilize whoever seemed useful and on the ball and was on the spot. But, between the first days of whatever it is, and the time when Red Cross/National Guard or whoever get there, maybe this program becomes useful, and/or, maybe it attracts and sucks in the sort of people who want to help and meddle but might without some direction be more likely to rush in and get killed. So it serves that purpose too (to kind of soak up those people.) It’s also interesting to think about which principles from this training are applicable in general, in less extreme circumstances, as … assessing a situation and basic leadership skills I suppose.

Humorous incident, which I will mildly obscure in the world’s longest paragraph, no one patted me THIS TIME (the training is full of nice church ladies who like to pat a wheelchair user and fuss about them pointlessly) but during the 10 minute break I laid down in the little nook of a pew where I was sitting with Danny and Ada and my feet on Ada’s lap, reading stuff on my phone and playing pokemon (feeling tired from my long day and because I have a sinus headache) I knew this would be likely to happen but it doesn’t make it any more fun when it does, one of the Nice Ladys came wittering up to “check if I was okay and needed any help” OK so, number one, I’m sentient and know if I need something or not and would do something about it if I did; number two I’m obviously there with my family and what kind of assholes would they be to just like, ignore me if I were … fainting or dying or something? In actuality she was partly bothered that I was doing something a bit unusual that I should not be doing (lying down in the pew) and partly just unable to deal with her own basic discomfort for my being there at all, which is super obvious and annoying to me but not always visible to others. And she wanted also to perform her role of authority figure in some way, at me, as a result. Like the other lady who kept patting me the first two days (who hate-whispered “you’re WELcome!” at me when I didn’t act right when she told me my bag was on the ground or something – which I actually did say thank you but i didn’t like, SMILE I guess, because I was recoiling from her touch) she didn’t like that I didn’t respond correctly (with the right sort of performative gratitude and kowtowing and probably also not the right sort of self deprecating middle class white lady femininity) Because I kinda looked her up and down a little bit too long before saying, “Well you’re certainly super ready for an emergency!” with chirpy sarcasm. “I just had to make sure that you’re alright blah blah” (Yes I understand I’m being scolded.) “I’m just lucky you didn’t whip out a tourniquet!” and I start cracking up. “Witter witter witter twitter whisp oh well *breathes heavily* it’s just so GREAT that you’re HERE and THANK you for BEING here and we UNLOCKED the DOOR for you over by the RAMP this time I mean we are really GLAD to have you HERE, THANKS” (Remembering Suzette Haden Elgin’s explanations of that speech emphasis pattern as hostility.) Yes… yes i’m sure it took like twelve committee meetings to achieve that dangerous miracle of unlocking the side door which the 15 year old independently went in to unlock for me the first two nights of class; it took about 3 seconds to do… I waited a few beats too long again to let her just work it all out of her system and finally said “Yup well thank you for organizing things.” I mean…. go thank all the other people in here! Fuck… this is why I never like to be part of anything organized unless it is a bunch of fucked up anarchists.

But I am great in a disaster, so go figure. Hope the patting committee spins its wheels for like the next year trying to build Awareness of Helping The Disabled. (Too tired to come up with hilarious acronym for it.)

The firefighters and EMTs on the other hand are just great. A+ for them. They don’t act weird. They have probably met a wheelchair user before and had a normal human conversation.