Building up strength

I am able to walk much further these days, mostly managing OK in the house and able to go out every day with some interludes of using my manual chair in the house (and powerchair for most outings). My new foot and ankle PT exercises are much harder and I’m venturing out of the house on foot (to visit next door or 2 houses down- a very steep hill) Today I figured I’d try to get to the bottom of the hill and back. I have a new cane with 3 legs that unfolds to become a seat so I used that on one side and my normal cane on the other. Down was OK, I sat for a bit on Mission and listened to the music coming out of the club on the corner, thought about whether I could make it across the street to Walgreens and buy something and not suffer too much from it now or tomorrow. On reflection I was somewhat weepy feeling from the intensity (physical and emotional both) of my half block journey so maybe better to take this more slowly.

Uphill was way harder and I stopped to rest twice (the cane with the fold out seat was a good idea.)

I’ll try icing my ankles and doing gentle stretches now – maybe an Advil and a tylenol – I hate the feeling of the entire arch of both feet spasming – so many separate weird little muscles. It also gets just a little bit of the “snake squeeze” feeling that is so scary (because it can get really bad)

Maybe going down just 3 houses, stopping, and coming back and doing that for the next week. It would be neat to have a small challenge like that, daily.

I need to install my pull up / toe stand bar somewhere under the deck – it doesn’t fit in any door frame upstairs but i’d like to start the combination toe-stands and pull ups again.

And maybe learn to do a push-up properly now that I have stronger toes! Ambition!

What will it be like if I can walk more? It was very strange seeing Mission as a vertical person. I felt so tall and unshelled.

I have been trying to imagine as I ride the bus, whether I could get to the bus stop, and then take the bus somewhere, and then I’d need to get across a street and probably a block or at least half a block the other direction to catch the bus home. Then another half block + up the hill again and then half a flight of stairs. Fucking yikes! I’m not there yet.

Keeping firmly in mind that I was in more or less this state in 2011 and then was felled for an entire year by bilateral achilles problems which have lasted a DECADE and which i’ve only just improved in the last 2 years to the point where I can walk flat footed and stand on my toes for a few seconds. So. Must not fuck this up ! NO MOON BOOTS!!

If you see me walking around, please know I’m struggling and having my own kind of private journey over here and just keep your comments and assumptions to yourself!!!!

On my toes

I have a small but nice thing to report. For the first time in 10 years, I can stand on my toes.

The thing that has done the trick is a simple pull-up bar which is mounted in a doorway. I saw this in my friend Erica’s house & bought one for something like 25 bucks back in January. It’s mounted in the bedroom closet doorway, the only one in the house that has room since I took the doors off the closet.

So, every day at least once or twice I stand there and do 20 or 30 half-pullup, half toe stands. With my “bad” leg, I have to think very carefully about where the weight is balanced and concentrate on the ball of the foot. It’s also good to keep my stomach muscles engaged.

There’s no way I can do an actual pull up, and I certainly couldn’t stand on my toes, but with the combined support I can do a weird hybrid. Bonus side effect, it straightens out my mid and upper spine amazingly so now I’m doing this so that my back will crack.

Last night there were bins of clothes in front of the closet. I was too tired to put them away. But I kind of wondered… could I stand on my toes without holding onto anything?

Tried it first holding onto a bookshelf and was able to do it. AMAZING. Then …. balance difficult… bad leg freaking out and slightly-less-bad leg screeching in protest . . . I did it unsupported and held the position. Showed this off to Danny and then quit as I don’t want to be unable to walk at all the next day!

10 years ago I couldn’t place my feet flat on the ground! Fixing that took me a year!!!!

I’d like to also say that therabands drive me up the wall, not sure why, a combination of factors. I’ve never really mastered them. Probably I need the kind with handles (the elastic hurts my hands). The closet bar has been so much more helpful and less painful.

I’m also doing the world’s tiniest weight lifting project with 2 lb weights, straight up, then straight up with arms rotated, then a “tree hug” type of move. At least once a day. It is also helping my neck and upper spine.

Well, that’s all — it’s just a lovely feeling that I can make this small change through easy and gradual habits.

Hunkering down

As we go deeper into social distancing, I have some thoughts to share.

Danny and I both tend to read the whole internets (usually while we should be sleeping) and keep our finger on the pulse of things so it is interesting to compare notes with him about the rapidly changing situation and responses and theories and all that.

It’s been touching to see people “reaching out” to me as a possibly vulnerable person. Often folks who I have known online a while and who are worrying about me b/c I am disabled. Thanks friends. (I am fine and have a lot of social support and also sufficient money.) I also got a pneumovax shot yesterday to potentially decrease a bit of risk of getting extra lung infections on top of COVID-19. Danny started working from home (partly to protect me which I appreciated more than I realized I would once he said it).

I had some plans to go circulate letters to neighbors offering mutual aid but I find that I’m just a bit exhausted emotionally. I might do it next week. Instead, right now, I am donating cash to the Disability Culture Club (Venmo to @DJCultureClub) and am hosting a Stardew Valley group game for kids/teenagers/anyone stressed (with the Unlimited Players mod). Hosting a small online space and making it hospitable and building out a game Discord channel is something I can do, and all the kids are out of school for weeks if not months, so why not. Gaming is now my activism, lol?

Here’s more about the DJCC:

Are you a disabled person or elder in the [SF/Oakland] East Bay needing extra support during COVID19, maybe because you can’t risk exposure on public transit, your attendant called out, etc? Please share your needs with us at https://tinyurl.com/DJCCsupportform so we can try to assist. Please know we are prioritizing BIPOC, will be triaging needs, and can’t make promises (grocery stores are sold out of a lot and we are disabled volunteers of color doing mutual aid, not the Red Cross!)

If you are an ally wanting to offer support, the best way is to Venmo us at @DJCultureClub to pay for hand sanitizer, masks, gas, caregiver pay, protective gear, groceries, and to fund ongoing mutual aid projects like this. We also very much need local abled volunteers who are not in contact with those at risk to provide support. Please complete our ally form here: https://tinyurl.com/DJCCally

The job hunt continues, and all the places that interviewed me and then said “we’d love to hire you but we can’t accommodate remote work” then went the very next freaking week (or two) into their entire company going remote. I should go back to them and say they should reconsider since I’m an expert in doing tech work from home — as I’ve done it successfully for two decades.

A lot of disabled people are having that sort of feeling of half resentment, half hope (or some other proportion, maybe it’s more 90/10 or 99/1!) at society’s ability to suddenly bend and adapt and change its structures NOW, for everyone, when they wouldn’t a week ago, for us. Or, are expressing some level of eye rolling as people go stir crazy after 2 days staying at home. Hi, welcome to a lot of our realities (me and other people who have had long periods “home-bound”). Oh, it feels so sad that you can’t go to that event you had tickets for and were looking forward to for months? Yeah I know. (Also skimming over the obvious horribleness of people hoarding stuff that for some disabled/ill people are necessary daily survival supplies, like alcohol wipes, etc but let’s move on for now…)

I can’t stay in that feeling for long, and what you should try to do to move out of it and let go of the bitter or resentful feelings, is realize we have many coping skills to share. Just like you, an experienced disabled or chronically ill person, would do to mentor a newbie, (Like we do all the time!) here is where your experience comes into play, and your having gone deep into these feelings and emerged again, becomes somewhere that you shine. That can sound too much like “we exist to teach the abled a lesson” but that isn’t it — because they’re not going to necessarily stay in able-landia, the world is changing for at least the medium term, and millions of people recovering from severe pneumonia isn’t going to result in millions of able healthy not-chronically ill people. They will need us, for solidarity and to know how to live well and we will need their mass political support even if it is new and based on their own new needs. (I’m thinking free universal health care here.)

That said, hi, I’m actually a bit scared, knowing we’re all going to get this sooner or later, and having had a lot of respiratory illnesses, I’m scared of having a worse one, because it’s scary and hurts and you feel super anxious not breathing well, and it would be a heinous way to die and I don’t want to die. However, if I do, not to be morbid, at least I have the comfort that I have had a really great life.

Back on my bullshit!

I’m back from my trip to Seattle, Vancouver, Whistler, and beyond! Now that I’ve taken the Coast Starlight train to all its destinations I can’t wait to take some more long distance train journeys!!

Danny has often pointed out to me how I go down a social class for every bag I’m carrying and it was even more true for this trip. As I went from my friend Els’s house near the giant geodesic dome thing in downtown Vancouver, to the train station, at 4:30am, laden with giant backpack hanging off the back of my wheelchair, smaller backpack at my feet, and duffel bag balanced on my lap, a little group of maybe 30-somethings was heading away from the crosswalk I was approaching. One of them veered off towards me holding out a bag. “Would you … would you like breakfast?”

Now…. what a question since I was just looking around wondering if anything was open so I could get a muffin or whatever before getting on a 3 hour bus to Seattle where I’d get back on the train. Perhaps this young man had been at some sort of … early meeting rife with donuts, or was a baker carrying home some fresh pastry and a MAGICAL CROISSANT was going to appear for me.

Thus I paused a bit, consideringly, and said “Um… what is it?”

“It’s my leftover McDonald’s pancakes. Please, take it, go on!” (Earnest eye contact, look of deep and pained concern.)

Maybe I should have taken it so he could feel good about himself but I did not and I may have giggled inappropriately without explaining but I did smile and was as nice as possible at 4:30 am on the street. Then I passed through a sort of encampment in the park and at the train station a cab driver was screaming at a definitely homeless dude who was asking for change and so I gave the homeless dude my leftover Canadian money mentally attributing it to the nice man with the free bag of (gross!) Mcdonalds pancakes.

Completing my downwards journey to squalor I then just flat out laid down and fell asleep on the (relatively clean) floor of the bus.

p.s. I did get breakfast from a nice man in the train station who opened a tiny cafe at 5am and sold me a slice of lemon cake!!!

p.p.s. Wait staff in Vancouver AND Whistler sensitively offered me a straw, multiple times! They lean over and say it with soulful discretion, while making eye contact and touching my arm a little! “Would you like a STRAW, ma’am?” (They have HEARD that disabled people have this whole straw thing so…….)

More about the amazing adventures on my trip later !!! A little at a time!!!

p.p.p.s. CRIPS!!

Notes on some Web4All talks

Back at Web4All, part of The Web Conference. Here’s some notes on talks I liked.

Dragan presented the talk “AudioFunctions.web: Multimodal Exploration of Mathematical Function Graphs” and I also got to see a demo on Monday afternoon. AudioFunctions works in desktop and mobile browsers to show visually impaired users the shape of a function through sound pitch and volume using a touch screen or mouse. As you move around on the graph with mouse or finger (or keyboard with arrow keys) the pitch rises and falls according to the position on the y axis, and the further away from the line you are the softer the tone. And you can double tap for the graph to read out the coordinates. It’s very elegant! I also had a nice time talking with Dragan and his friend Cole from CMU about Ingress, indoor and outdoor navigation apps and maps, Inform7, and other fun stuff.

I caught just a bit of a talk by Lora Aroyo on CrowdTruth, which is a system for annotating information while allowing for ambiguity and disagreement, and had a look at the tutorial. It made me think of the CYC project (which I nearly worked on 30 years ago… but rejected the job offer (with regrets)) – I wonder if they are putting data into CYC now through Mechanical Turk instead of by hiring poets.

A talk called “Addressing the Situational Impairments Encountered by Firefighters through the Design of Alerts”, very interesting to see the design and testing process explained. Though I was annoyed at how this was introduced as being more convincing to designers that they need to pay attention “because firefighters are so rugged and not permanently disabled.”

Another talk on designing and piloting web dev classes for blind/visually impaired screen reader users. Looks like a good project. (opinion…. As so often with these kinds of classes the level of knowledge your students start with is important and you have to spend 90% of the initial time providing background on computers, the internet, programming languages, tools, etc and either you acknowledge that and make it a hella long course, or you end up creating a sort of hothouse dev environment so that students can experience the gratification of publishing something that works)

An interesting trend in some of the talks – use fairly sophisticated analysis to figure out (on the fly) what users might want or are trying to do or what barriers they’re running into based on how they interact with a page. For example it doesn’t matter to the vast majority of users that a site or a browser is infinitely configurable because they are reluctant to change defaults for fear they will break something, so, it works better in most cases to analyze and guess — are they having trouble or going very slowly in clicking links in small elements of the UI? Detect that and serve them a redesigned page with larger UI elements to interact with. (IMHO just design it to be less persnickity in the first place…. but…..ok).

This is an issue near and dear to my heart, or maybe my butt or my feet depending on how you look at it, because my powerchair “guesses” what I might want to (or “should” ) do; when it thinks i am going down a steep slope, it slows to a crawl no matter what I tell it. So, sure, you can guess what i want but give me the capability to override and reprogram it!!! omg.

At lunch one day I talked with Alex Jaimes about the company he works at, DataMinr, and today I hung out with Nathanel who works on RDF data systems and his fiancee whose name I didn’t catch but who works in digital humanities. And also had a nice gossip with Amy Hurst who was at CMU and now teaches HCI at NYU and heads up the Ability Project.

One last note on Chet Cooper’s project for Ability Magazine, Ability Job Fair. Basically this is a super accessible online job fair. Employers pay to list their jobs and for job-seekers it’s free. The next job fair will be on July 25, 2019. I’m interested in this project because I get asked by other disabled people all the time, how to get a job “in tech” and I’d like somewhere to refer them! During the job fair, they have sign language interpreters on-call to assist with live meetings, real time talk to text for people who have difficulty hearing, a system set up to be compatible with JAWS and other screen reader applications, and support for using voice or SMS. Chet was explaining more stuff to me during a coffee break and I got the impression he has a hydra with a lot of heads. There is also Ability Jobs which has job listings (aside from the actual event of the job fair) and some other thing called Ability Corps which is a volunteer org that from the sound of it is trying not to be a sort of charity model of abled-contributor-to-disabled-client, but to actually include disabled people in some kind of mutual aid process and to be enthusiastic about disabled people doing volunteer work in a serious way.

Wandering a dream campus

Vivid dream this morning of wandering around a university campus (imaginary) where I worked and went to school. There was a central building for “rehab students” (disabled ones) where you could go hang out. I felt at home there & everyone was nice.

In this dream I was hours early for a class or appointment, and decided to explore. The only reasonable route from the “rehab” building to the central part of campus was shaped like a giant children’s slide wide enough to drive my wheelchair down. There were also enormous grassy hills which I could almost get up to the top of if I serpentined – but then would sometimes slide backwards to the bottom again.

Many other bits of the campus had ramps or slopes which had odd inconveniences. One had an old fashioned metal children’s merry-go-round right at the top of a slope. It was annoying but didn’t stop anyone.

I rode a specially accessible bus around the perimeter of the campus, admiring places I’d never been and didn’t know existed. But the accessible bus was more like a giant station wagon with a bus-sized bed in the back where you could lie down; I had to take my wheelchair apart and unload all my bags and things and battery and shove it into various inconvenient spots and sit on half of it. When I got off it was a tense process of me yelling at the bus driver to please not leave while I was halfway through unloading the unwieldy pile of wheelchair parts and pouches of junk onto the sidewalk!

As I rode the bus I was trying to install an app someone recommended to me on the university’s chat server, with a utility called “bottle” because it was based on code from a bot. The interface required typing with very small virtual keyboard keys which I kept fat-fingering. Finally I got the commands typed correctly & the game installed.

The place where I got off the bus had an entire hillside that was high end shopping and a combination sports stadium and huge bleachers where choirs were performing (many at once, combining beautifully and echoing over the hillside.)

Meanwhile I was looking up fun things to do on campus and found a pool with an exercise class. When I got there – people weren’t sure if they should go in. It was an ocean salt water pool, more like a giant tank at an aquarium, full of seaweed and fish, the bottom was sand with rocks & coral, and you had to be naked to go in. Being me, I took off my clothes and got in, leading everyone else to feel they had permission to do so as well. We frolicked in the water until it was time for the fake tide to turn (they drained most of the water, then refill it slowly). The person running the “class” was a somewhat creepy old guy. I ignored his weird explanations of the naked exercises we should be doing and just played in the water.

Not a bad dream – full of those “somewhat inaccessible moments of frustration” that so often pop into my dreams though.

Major lessening of pain

Every day that I wake up and I’m not in crushing pain it’s so amazing. I run though a little inventory and my arms aren’t burning and aching, my feet and knees have the mildest ache, I can take a deep breath because my spine isn’t fucked up. I do a little tai chi or do some housework or go swim, and feel a *healthy glow*. Fucking bizarre, I love it. Instead of burning willpower like rocket fuel as I try to achieve escape velocity in order to get through daily life, I’m just… chilled out. There’s so much more room. I am trying to keep myself in check so I don’t fuck this up. Gradually building up strength is the goal here! Doing just a bit too much takes me down for a day or a few days or a week, not months…. if only this lasts.

I want to do ALL THE THINGS right now. My huge greed and ambition, restlessness, desires to do everything, to make stuff, to pull marathons (of making stuff obviously not literal marathons) all need to remain CHILL.

Cannot take this good spell for granted so I’m trying to just appreciate it for what it is without being too goal oriented. Slow & steady.

Two excellent essays

From A Future Worth Thinking About (a blog with a great tagline – Thinking about magic, cyborgs, robots, and artificial intelligence–and why some of those words could use changing–since 1982), “Heavenly Bodies: Why It Matters That Cyborgs Have Always Been About Disability, Mental Health, and Marginalization.

And Making Kin with the Machines, which I enjoyed so much I started laying it out as a tiny zine (it would make such a nice small book for a pocket and it is creative commons licensed.) We’ll see if I actually do it or not… maybe… if i get the layout to my satisfaction.

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.