Category: disability

Slow absorption of history with digressions

Posted on by Liz

I’m still slowly reading In These Times: Living in Britain Through Napoleon’s Wars with forays into Wikipedia or pauses to read a book or two or six by people mentioned in the history. Last night I ended up trying to explain Lord Uxbridge’s leg to Danny who got interested and then read out loud to me from Mr. Dallas’s speech in court to defend Henry Paget (the Noble Lord). (Result: Paget paid 20,000 pounds to Wellesley for eloping with his wife Charlotte.) Readers of Regency romances take note, Paget was married at the time to one of Lady Jersey’s daughters.

Onward to some more Luddite riots centered in Bolton and Preston (land of my ancestors! at least one branch of them! Weavers and miners all, emigrating around 1900 to work in more mills but escaping the mines!) and a long chapter about Shelley and co.

One pause was for Life in the Sickroom by Harriet Martineau, which is AWESOME and which I’ll summarize soon. I liked it so much I found a (cheap!) first edition online – leather binding, marbled papers – Lovely.

I am probably going to pause to read the novel Patronage by Mrs. Edgeworth, but first, a complete departure since I need to recharge my Kindle, this morning in the sun on the porch with coffee, with a real life paper book in hand: From the Legend of Biel by Mary Staton, which I had never heard of till James Nicoll‘s mention of it in a review. So far it’s glorious, weird, trippy, one of those Freak Out in Space books a little like Solaris, as the head of the 4-person expedition to planet MC6 enters the pearl-like featureless dome trying to map the maze within and finally, the center, and some glass holograph floppies which, slotted in, OVERWHELM HIS MIND with story.

book cover with geometric buildings

Why, why, why, would you want to wear a jumpsuit uniform in space and as you explore another planet? They’re always unzipping their jumpsuits (but never to pee) What is wrong with just … what about pants and shirt, space explorer uniform designers? I guess the idea is that in zero-gee you don’t want your shirt floating up but that is why we have tailoring, knits, even perhaps Space Suspenders.

Other moments where someone enters the dome, or the ruins, of the past or the aliens or one’s ancestors: Pern on the Southern Continent (with bonus rocketships), I think one at least of the books by H.M. Hoover, an Andre Norton or two or five (especially the one where they jump around on the colored squares to get in, like Dance Dance Revolution). And so many more. I have to think it is from Lord Howard and the pyramid (The protagonist of Biel is even named Howard – subtle. )

Long reading journeys since I am still in enforced idleness of convalescence from surgery and can’t sit upright for very long and leaving the house (while possible) is unwise and painful. It’s amazing how beautiful the world is though when I do — the bus ride to the doctor yesterday & back again was as wild and ecstatic as the journey into the dome of MC6 — I was early, bought an It’s-It at a cart at the cable turnaround at Powell and sat in the sun in a clean bit of pavement (recently washed perhaps by the new mayor’s power-washing crew) providing entertainment to all as part of the San Francisco landscape. Purple haired woman with a leather jacket sits on the pavement next to her motorized tricycle (decorated with artificial flowers and a unicorn horn), eating ice cream and beaming — small children tagging along after their parents with rolly suitcases drop their jaws and their heads swivel as they walk past or sometimes stop dead in their tracks to stare. I wave like the Queen of Tricycles and try to convey my harmlessness to the parents. Sometimes I’ve been stopped in that area or by the Mint by tourists who want a photo with me. Colored hair is not that strange anymore so I have to lay blame on the unicorn horn. The people waiting in a long line for the cable car ride (where I always think of young Maya Angelou), the guy sleeping next to the railing, the band playing not-great but adequate steel drum, a sunny day…. Endless parade of people going places purposefully. I loved everyone.

A month after surgery

Posted on by Liz

This was a fabulous day. I had more energy, I cooked some things, folded a lot of laundry, and did my project to paint a small shelving unit in the bathroom. With interludes of lying down but this is the most active I’ve been since June and it was so nice.

liz smiling with a paintbrush

I feel more certain that I’m healing up from surgery now. Danny did all the shopping and laundry and Ada helped out with some things and cleaned her room after getting back from a gaming sleepover. Dinner was 2 kinds of congee (chicken broth in one pot and vegetarian in the other) with poached eggs. I also used up Ada’s solstice harvest pears and apples and a lemon making a pear-apple crumble. It is strangely satisfying to just make up whatever I’m cooking as I go (occasionally leading to something inedible) My chicken congee had tomato, bok choy, fresh ginger, cumin, and a lot of pepper. Ada’s vegetarian kind had tofu, soy sauce, some frozen mixed vegetables, shredded carrots from a bag, bok choy, tomatoes… lord knows what else I threw in there but it came out nice. I have not cooked anything other than toast or a microwave dinner for a long time….

I am missing Milo who is back at school (moving back just this Wednesday).

I also left the house Thurs. night for an hour of the EFF Pioneer Awards (nice to see people! and to be out!), Friday (on the bus) for a dr. appointment, and Saturday afternoon to go to the retirement party of one of my comp lit professors, again, amazing to see her and my super wonderful thesis advisor and friends from the program from 15 years ago (!). Lessons learned from going out: I am not yet ready to scooter around town or take the bus. It hurts too much and I need to seriously limit going out, and stick to cabs. (I have to lean heavily to one side when sitting up, including on the scooter, and it hurts my back and also, bumpy sidewalks omg.)

I’m in bed for the evening now reading about the 19th century novelist Mrs. Sherwood aka Mary Martha Butt. From ages 6 to 13 while learning her 40 lines of Virgil per day she was locked into some sort of “stocks” and also an iron collar around her neck with wooden boards to keep her posture correct. Her novels are a bit horrible (fascinating though – and she has a sense of humor – and you can see the seeds of later childrens literature in there). I would like to read a modern biography about her.

Meanwhile, I read just the Wikipedia entry for social theorist and writer Harriet Martineau: https://en.wikipedia.org/wiki/Harriet_Martineau and am VERY KEEN to read her book “Life in the Sickroom” from 1844 which she wrote while she was confined to bed for a couple of years. What horrors will it contain!! But what possible insights that I might actually agree with!!!

These digressions in reading are all from interesting bits of my main book right now, “In These Times: Living in Britain Through Napoleon’s Wars” which seems endless by Kindle-percentage standards, but I am sure the last half of it is footnotes. It jumps between focal points (like Banking, or Weaving).

While recovering from surgery I read nearly everything possible (in e-book form) by Charlotte M. Yonge (who I like better as a writer than Mrs. Sherwood) well worth reading – like Margaret Oliphant. She is especially interesting in writing around the 1830 riots.

I had to just accept that I needed the surgery since I wasn’t getting better without it and wasn’t really able to function well in any way…. Tied to a strange cycle of this abscess unpredictably starting to swell, then a hellish time of waiting for it to burst, then like, feeling horrible but marginally more capable but it started to happen more than once per day. That really sucked. So, I went on medical leave and they de-roofed it (ugh) leaving a giant open wound. Once I made the decision it was a little easier to just switch gears to Very Low Gear, or maybe Neutral, and idle. I prepared pretty well for this arranging everything for my bedside life, cleaning off a shelf that I look at from bed to put some plant pots and extra vases there and a giant rack of in-out boxes for my drawing supplies. And, I slowly drew (mostly while lying sideways) some of my planned scenes of the neighborhood. It is so helpful to have some sort of plan like this. I also laid on the front porch (once capable) in the sunny hour in the morning and on the back porch in the afternoon to catch the last sun before winter. I find it hard to lie still not doing anything – I look around and enjoy seeing stuff but start to want to change stuff, plan things to do, and it is very annoying not to be able to get up. But, this time, I think it’s the best I’ve planned (and had infinite resources…) And best I’ve coped.

Leaving out the days of being glued to news, twitter, Senate hearings, rage-tweeting about Kavanaugh and rape culture, crying, and freaking out and also the 2 weeks of heavy drugs just after the surgery.

An exciting non-event

Posted on by Liz

An exciting event for me but hardly noticeable to anyone else: I not only went to my sister’s house yesterday and managed all the stairs multiple times, but I bravely walked across the street, across a parking lot, then down half a block to a restaurant. So, this is the first time in years I managed to walk on my feet from a place to a different place. Despite the stairs, this was easier at my sister’s house than at me and Danny’s house, because our place is on a steep hill. My knees and ankles are really feeling it now and I am going to ice them a few times today and do gentle stretches but nothing challenging.

I’m going to try doing this again on Wednesday and Thursday if I’m up to it, since we’ll be there again. I would like to work up to walking a block down the hill to Mission from our house, then across the street to one of the restaurants there. If I can do a block and a half on the flat, it seems possible.

Me in lauras garden in leather vest

As I ambled ginglerly across the uneven parking lot I was overwhelmed with a feeling of excitement and vulnerability. Only Danny really understand this. It’s not something I can expect and I can’t be too disappointed if I work up to it (again… for the millionth time) and then can’t keep it going. It is also very limiting even as it’s freeing. I feel free of the slight encumberment and clumsiness of my lovely cyborg exoskeleton. But since I can only go about 1 block, I am limited in what I can do, there’s no casual going a couple of blocks extra or doing errands, I’d have to painfully walk home, get my scooter, and go out again. So if I venture forth on foot, I lose sponteneity and range as well as it being more painful.

Still it has its own special excitement. How wild it would be to show up at the bakery by my house or the nice cafe, strangely unmarked, and order my pastry, several layers of other people’s fuss, emotional reactions, expectations, pity, panic, dislike, mistrust, or hostility, just removed from my day like MAGIC…. as a special and temporary treat. It is truly like going through a portal into a different universe. Of course with my perspective of living in my own universe for many years I don’t respect the deceptive ease of Unmarked Land. Naturally I will still be leaning on my cane and limping so it is not as unmarked as all that. Miles, universes different though.

Six month celebration: Sojourner!

Posted on by Liz

This may look like just a badge in a silly game, and that’s what it is. The “Sojourner” platinum badge in Ingress, for hacking a portal once per day over continuous days without interruption.

sojourner-ingress-badge

Within 24 hours I have to get to a place in real world geography, where there is an Ingress “portal”, a game location you can only affect if you are within 50 meters of it by geolocation services. For me that means I go one block away from my house, in either direction, either up the hill to the Good Prospect Community Garden, or to the corner on Mission to “No Temas, El Señor Está Contigo” which is a mural on the front of a tiny local storefront church.

So to me, my Sojourner badge for hacking a portal every day for 180 days, is also a beautiful marker that I have been mobile and healthy enough to leave the house every single day for the last six months. I’ve been looking forward to this milestone! If I “failed”, it is okay, it means I was very ill, or not physically able to get up and down the stairs, and that happens and it’s not always under my control. (And that will happen again, I’m not getting any younger. ) Some days, it has been a case of “OMG, it’s raining, and cold, and I don’t feel well, but…. I could still make it to the corner and back on my scooter”. The badge motivated me that little bit.

It feels like a nice moment of celebration anyway, I am happy that I’m at this level of ability and mobility. It also take confidence to leave the house by myself when I am at low points. I talked over the idea of “leaving the house every day” as a measure of quality of life for myself, last year with my super nice therapist who works with people with chronic pain and disability. I feel satisfied with myself and proud.

Personally I have to watch out a little with this sort of gamification, for example, having a FitBit made me want to push myself too hard to walk more than was good for me. For personal comparisons of activity level but it may have been negative as well to keep seeing my 900 or 2000 steps compared to people who aren’t disabled. Under 1000 steps means barely walking enough to get to the bathroom and get myself tea and mostly being in bed. (Likely means I am scooting around the house sitting on a walker seat.) Above 1000 means functioning well walking around the house, doing a little housework and so on. 2000 and a flight of stairs means doing a load of laundry in my basement/garage, or simply leaving the house! (“Steps” can mean …. shuffling very tiny steps, weight shifting. Not like striding around. )

The Fitbit’s data tracking was useful and I may try using it again, as it was good to just show a doctor or physical therapist how my usual levels of activity changed, in a crisis. Without that kind of information they may not understand that “using a wheelchair” is not just one state of being and how much varying levels of mobility can impact a person’s life. I like the style of the Sojourner badge a lot as a positive and achievable measure for myself over a long period of time. Maybe I can make it to a year for the Onyx badge?!

Pak protector in utility vest

Posted on by Liz

Sometimes when I’m bitching about joint pain Danny points out I am probably becoming a Pak protector. Uncanny since I really love wearing vests and eating sweet potatoes and would love to be the superintelligent fighting machine protector of entire planets, ringworlds, or whatever, while fixing and inventing things and reading libraries full of books.

Anyway, someone stole my tool bag which was crammed full of many years full of useful things. My mini soldering iron and my tiny level and well, nearly everything. The less useful tools are in the house in a tool drawer if you feel like coming to take them to complete my inability to fix things. OMG! Anyway, I have been slowly researching and plotting my new tool collection. Everything will be either very nice, and tiny as possible so it fits my hand and is maybe super ergonomic, or old, well made, vintage tools with really nice heft and design that I will magically find in garage sales and flea markets. I may go with the technique of having several canvas rolls with pockets, inside a big bag without a lot of separate compartments.

Today I went off to go to Workingman’s Headquarters which is that shop run by two old guys in the Mission (planning to just explain my list of tools and trust to the one of them who is nice’s judgement) I had been planning to stay in bed most of the day but the sun came out and I felt so tempted to wander around. Since the shop was shut I got a burrito and sat in the amphitheater-like area in the back of the 24th St. BART plaza listening to cheerful music and watching people. I nearly got a chair massage but instead I was looking at all the people with kind of janky old wheelchairs and who were having trouble carrying their stuff while on crutches. I took some notes on what I thought people might need for repair or modifications but didn’t go around talking with people, I want to think about it first and try some things out.

While on crutches myself I arrived as many people do at the idea that you can have a drink bottle with clip attached to your pants or belt or backpack loops. Mine would clank around but I got used to it. It is too hard otherwise to carry a drink. I also wore my keys and bus pass around my neck or on a Key-Bak type of device (which always makes me think of my friend Sabina since her grandfather invented it).

I was also thinking of talking with Corbett the other day about putting d-rings and webbing on available bits of wheelchair, and knob things to keep my backpack from slipping off my seat back, and how I was talking with Claire about Design Patterns and how there are mobility/accessibility patterns and antipatterns. Most crutches and many chairs lack places to attach or hook other things. You can go into a bike store and find things designed to clamp around bikes. Some of these work with wheelchairs and some don’t. Anyway, attachment points, or attachability, should be a design pattern for mobility equipment.

When you enter the Cripsterhood you should be issued a crapton of sticky backed velcro, cable ties, duct tape, hose clamps, pvc pipe lengths, and bungee cords along with your Durable Medical Equipment!

My foam padding with velcro strap and buckle hack is still KIND OF working on my TravelScoot front pole. Looks gross but it protects my knees from being bruised on the adjustable clamp. I also have a wire frame water bottle holder I got from a bike shop clamped on with velcro straps. The image in my mind here was that I want several rings or hooks that stick out from the scooter frame, so that I can attach stuff to them. I am not sure what. A beer opener would be a good start.

At the hardware store I came up with the idea of getting some cheap pipe straps, bending them around the scooter frame tubes, and fastening them with eyebolts or s-hooks. I tried it out and it worked pretty well. A 2-hole pipe strap is curved in a half circle and meant to be fastened to a flat surface. Instead I fastened it to itself. The size I got cost 50 cents and the eyebolt a dollar fifty. That is probably cheaper and less messy than velcro in the long run. Now I can hang something from a keyring or keyback or carabiner from my scooter steering column. I may do the same at many points around the frame to see how that works out. The problem is that it sticks out and the end of the bolt is a bit too long. A shorter bolt or a plastic cover to screw onto the end would improve the design.

I also wonder if the bolts might get in the way when people are folding or carrying the scooter. The nice thing is I have not had to drill into the scooter frame and taking off the eyebolts is super easy if I don’t like them.

While I was hypnotized by mobility gear at the BART plaza and wandering around the hardware store aisles I also realized I could fix my loose footrests. The foot rests on my TravelScoot fold upwards for compactness, like folding bike pedals. I often want to fold them upwards on the bus so that the sticking out bits won’t trip anyone. They are floppy and tightening them didn’t help. So, I found some neoprene washers intending to put them inside the footrest joint.

This didn’t quite work as planned since even after I got the bolt out, the pedal itself would not come out. I think if I had several more, and stronger, hands, I could have bent the metal a little and popped out the footrest. Since I don’t have either I just put the neoprene on the outside of the joint on both sides of the bolt. Hey! It now holds the pedal nicely folded upward. But when I look at it, clearly it isn’t going to last. I think one or two metal locking washers would be a better fix if I have to stick to the outside of the joint.

footrests flipped up

I got a lovely new tiny vise grip which is much better than trying to do this with an adjustable wrench or needlenose pliers like every other time I have messed with this beast. Yay vise grip! It’s so cute. The few tools that escaped are in the Mozilla Taiwan bag that I got at our last work conference which had chopsticks in it. Mini hex key with just 2 sizes (one perfect for scooter), 2 screwdrivers, pliers, scissors etc. And now my new best friend the tiny clamping thing.

tiny vise grip

The best way for me to tighten this (keeping in mind my hands hurt and are not strong) was to carefully stick the vise grip on the bolt, set it, then put a screwdriver through the eyebolt and turn it like a sort of handle or lever.

Meanwhile today Danny messed with our servers and Ada and Milo designed a card based combat system for her birthday party’s LARP’s climactic battle. Zach came over to get his packages and we discussed tools and comic books and I cooked him an omelet. His sound engineer guy is now hanging out at Noisebridge and Zach made him a glowing programmable LED sign with his DJ name on it (I only saw photos.) It was a nice day…

If you have tools to recommend to me, please have at it in the comments!

Weird patters

Posted on by Liz

In El Farolito today by 24th and Mission it was crowded but everyone was super smart about negotiating the narrow lanes in between the ordering counter and the tiny narrow tables. After I ordered I went to wait for my burrito by the door and the trash cans and newspaper rack where other people were obviously also waiting for their magic you-win-a-delicious-burrito number to be called since it got me out of the narrowest part of the aisle. Unlike many other crowded situations no one was bashing into me or acting like I was in the way and I felt at home and happy… Everyone just sensibly edging by each other very politely. I think it helped we are all salivating with desire for our food while staring through the sneeze shield at vats of carnitas and beans.

Then from behind! A patter! A rare but hideous, sugary voiced patter didn’t just pat me but kind of slid her arm around my shoulder from the back and down my arm. “Do you need me to move things so you can get out?” she cooed as if I were 2 years old. I recoiled in horror and turned around. What is in this gross woman’s mind! What the fuck! I didn’t have a snappy reply but just said “No I’m waiting for my burrito… like everyone is…” Then a couple seconds later I said “You know, if I needed help to get out, I would say excuse me to the people I needed to get past!! Like people do!” and put some extra WTF into my incredulous look.

I wish the patters would quit their bullshit. Offering help… ok I guess, though I was to any person of sense, I was obviously waiting in a crowd of other people waiting who were all holding little numbered receipts and idly looking around. But what is with the hug and arm slide from behind. Gag me!!!!

As she left I realized that the guy a few people behind me, nearer the door, was with her and she collected him with the same tone of voice and hug and that he was developmentally disabled. I then was extra annoyed that she talked to him like that too and that must be her special “disabled people voice”. I then had a hilarious image that maybe she just interacts with every person that way and is from the Planet of Alien Sugar Hugs. I imagined her sneaking up behind the line of burrito making dudes and giving them a snakey little hug as she condescendingly ordered her burrito. I would pay to witness this scene. Anyway, it made me start mysteriously laughing as I waited for number 93 to come around.

Quick fix for my scooter

Posted on by Liz

Yesterday taking BART over to the East Bay I realized not for the first time that my scooter seat is too low. One of those items on my list of things to do for months: measure the post and see if I can easily take it off and replace it and figure out where to get that exact size of metal post. My leg is doing that thing where electric shocks buzz down it every few seconds. Sometimes sitting up in the wrong position sets it off and a cascade of weird back spasms means that one or both legs are basically in hell.

I went to a tiny bike repair shop down the street from me, Heavy Metal, where I heard they are friendly about wheelchair repair. The guy there worked with me to get the post off. It was surprisingly tough; there’s no way I could have done it myself! After a bit of knocking it with a hammer we clamped it back onto the scooter base and then were able to lift the seat from the top of the post. As I hoped, it was a standard diameter. He had perfectly sized replacement post just lying around. But if not then we could have cut one down shorter.

seat post for scooter
the new post is much longer

Now I have a lot of flexibility in the seat height. My knees aren’t over bent and my back is straighter in the chair. I feel a bit taller talking with people who are standing up, and that much more visible to drivers while I’m crossing the street.

If you look hard at the picture you can see I have sprinkled the scooter frame, battery, and seat back with blue and white “accessibility” logo stickers. (You can get them pretty cheap on ebay or amazon). I think this has helped a little bit to get across to random strangers, bus drivers, and so on that I am not riding a hipster toy for fun.

Also crossed off my giant to-do list: made a dentist appointment, made a pain clinic appointment, scheduled delivery for new mattress. Not yet crossed off: Take some painkillers and a nap.

travelscoot-jr
a small mobility scooter

Thoughts on UberAssist

Posted on by Liz

Yesterday I found out that UberAssist was available in San Francisco. Since both my manual wheelchair (a Quickie Ti rigid frame) and my mobility scooter (a TravelScoot Jr.) can fold and fit easily into the trunk of any car, I have used Uber and other taxi-esque programes since they were first available to me. I understand UberAssist as follows:

* Drivers can opt in to take a training class (online) and a test in how to assist disabled and elderly passengers in a polite and helpful way.

* The training was developed by some outside consultant.

* The training is free for drivers.

* UberAssist rides cost the same for passengers as UberX rides, and the drivers get the same payment rate.

While I may use this service, I am dismayed and worried. This is simply the behavior which all Uber, Lyft, and taxi drivers should follow: being polite and helpful to their customers, and not discriminating or behaving in a rude or bigoted way.

Are “regular” Uber drivers going to now refuse to pick me and my wheelchair up, and tell me to instead call UberAssist? That seems a likely outcome. When that happens, I will complain to the fullest possible extent not just against the individual driver but against the company, which should, and obviously can, require all its drivers to pass anti-discrimination training.

To top this BS off, Uber is offering the inspiration porn-like option for riders to be charged a higher fee for their ride, out of which a dollar will be donated to the Special Olympics, a button labelled “INSPIRE”. Yes… Inspire. Soooo, which disabled taxi users did they ask what they thought of that name and that option? This is Uber’s response to facing a $7.3 Million fine in California? Or the ADA lawsuits gearing up?

liz with a wheelchair wheel in a taxi

So, meanwhile, I needed to get downtown to the Independent Living Resource Center and I was feeling too exhausted and in pain to take the bus for 40 minutes plus. I tried the UberAssist option. Enough drivers must have taken the training and signed up for the program in San Francisco to give a reasonable density of drivers. Response time to get to my house was 3 minutes for UberX, and 17 minutes for UberAssist. Not great but not unworkable for me. The driver who responded explained to me that I was his 2nd Assist rider, and he signed up for the program because he loves helping people. I told him that I also love helping people. (It did not seem to be part of his thinking that a disabled person might help people.) We conversed pleasantly. I think he was a bit disappointed he did not get to Help me a bit more. He also complimented me on my “positive approach towards life”. Fellow crips will know how “happy” that made me. However, I can fake it to be polite.

On my way back, I had a super helpful and nice driver who said we were her first Assist customers. I appreciated her helping me and my son load my folding scooter into her car trunk. It felt like a normal human interaction. It was not really any different from most other times I have taken cabs. Most drivers get out and offer help. If they don’t, I can usually lift the 30 lb scooter into a trunk on my own. If I can’t do it on my own I most likely have planned to have someone with me….

Also feel I should mention, I don’t always take extra time to get into a cab. Sometimes I’m a bit clumsy or unprepared or I ask for help. It is a matter of an extra minute or maybe two. Not any more than someone with a suitcase would need.

For an example of how some drivers think about disabled and elderly people (bigotedly), have a look at this discussion forum for drivers. It was so horrible that I could not get completely through the multi-page thread. These drivers seem convinced they can and should refuse wheelchair using and elderly passengers, and, that if they don’t, Uber should pay them more for driving them. This is just heinous.

And yet, over the years I have only had one driver behave badly (very badly) to me and one driver cancel after I mentioned my folding wheelchair in a text.

Will I really wait 10 or 15 extra minutes for a cab routinely, for the sake of possibly increasing my chance of being treated with normal consideration?

We’ll see if UberAssist backfires or not. Maybe it will become routine for more drivers to take the training.

And maybe, able bodied and non-elderly people will use it. That might have an interesting effect on the outcome and politics of this social experiment.

If you’re in New York City, here’s a protest happening tomorrow: Krips Occupy Wall Street (OWS Disability Caucus). Do come out and support the protest!

“As you may know, Uber now has 18,000 vehicles in New York City — but not one wheelchair-accessible vehicle. We’re throwing up a protest line — we call it a roll-in — at the Uber offices on 26th Street next week on THURSDAY, JULY 30 at NOON. If you’re around, it’d be great if you could be there. Can you come by? Can you bring anyone? Thanks.”

None of this takes away from the important fact that we should be fighting to make buses better for everyone, and for taxi drivers of all stripes to have better employment rights and protection.

Stuck at home with shingles

Posted on by Liz

I came down with shingles a week and a half ago. It’s in a stripe around the left side of my torso. It’s been a weird adventure. The skin where the rash is burns and has allodynia (sensitivity to touching anything, and even to air). The muscles ache and spasm and are weak. It is physically intense. I am dizzy and groggy from the nerve pain medication, and feel strange from the burst of prednisone. It is quite odd to have pain and dysfunction in a new spot on my body. I got antivirals very very quickly using a local doctor housecall service.

I am already disabled and deal with chronic pain; there are good and bad sides to that. The good side is that I have many coping strategies to deal with pain and impairment, practical skills and emotional skills. The bad side is I am often right on the edge of overloaded, and this pushed me over it. The other thing is that I have to remember firmly this is 95% likely to be temporary. It isn’t something I have to adapt to forever and learn how to live with. I just have to rest and get better! This book, The Pain Survival Guide, is very helpful and pragmatic.

I will lie here like a sort of cosily beached flannel coated manatee, gently hallucinating in and out of dreams. Clothes and blankets hurt. I have a large silk scarf toga, a light gauze sundress, and a flannel tank top that work ok as clothing. Any motion hurts, and any weight or something touching my left side hurts extra. It is hard to use the computer, or to sit upright for long. I can balance the laptop on blankets and pillows across my hips while lying down. But the phone is easier. I have laid here swiping through twitter and now Facebook (which I’ve never had on my phone before this), and idly reading news and the few blogs still active in my RSS feeds. I very much miss the feeling of blogging being outside of particular platforms! It is so good to see friends and chat with them and be distracted by the Internet and by books.

Books: the Bloody Jacky series (trashy fun, with Napoleonic era naval adventures and girls’ boarding school, combined!), and lined up for when I feel a bit better, Shadowshaper by Daniel José Older, and Marguerite Reed’s Archangel.

One thing that comforts me a lot in this state is to have a nicely arranged bedside table. It gives me a feeling of control over my environment. It is pretty to look at, satisfying somehow, and I can get many things I need without asking for help or getting up. I have flowers on it, my touch lamp torchiere (pointing up) which i really love being able to adjust to 3 levels of light, shea butter, coffee/tea mug, a giant chunk of green glass, my crystal cube holographic print of the entire universe, and my wooden letter rack that holdes all my devices sideways for recharging. It holds my 11 inch Macbook Air, a kindle, an external hard drive, my phone, and an external battery and sometimes also Danny’s mini iPad. That’s a lot of devices in a very neat, compact space!

Nightstand

Two big power strips are hung on the side of the nightstand. Over the power strips in the space between the bed and the nightstand, I now have a thing I bought off Amazon, called an “Urban Shelf”, an idea for a thing covering this space which I have tried to construct from junk several times and failed to implement. the Urban Shelf works very decently. Its slots for power cords have been helpful and now my million tangly cords are less in the way. Right now the urban shelf holds a kleenex box but it has also been good for my entire laptop, plates, etc.

I like being able to look over at the nicely arranged nightstand at the flowers and polished wooden surface. I polish it with lotion or oil. I like to turn on the lamp which glows gently through its own glass, the red glass of my bud vase and the green and universe glass. Past the flowers on the side of the narrow bookshelf I can see my little trading card that has Oracle on it at her computer. Secretly corny shrine to Oracle….. Maybe I will get an Instapainting oil on canvas version of Oracle surrounded by screens in her wheelchair. I find it so heartening – I can’t experess how it chirks me up to connect anything about my situation with a badass superhero mastermind.

Oracle screens

Here is my amazing instapainting of a scene from Journey to Babel that Danny got me for my birthday last month! I like to think it stands for my love of translation (and science fiction). Maybe I’ll move it from the living room to the bedroom, so I can gaze upon it from bed and laugh.

Journeytobabel

Inside the nightstand drawer I have many conveniences like earplugs, nail clippers, lidocaine cream and other lotions, usb sticks, clips, headphones, lip balm, bookmarks, hair ties, toothpicks, some medicine, pens, scissors, asthma inhaler. I would be so lost without this magic drawer full of junk! The cubby below the drawer in theory should have a selection of good books but right now it needs to be cleaned out since it’s so stuffed full of books you can’t really get use out of it.

Maybe if I have a limber and non dizzy moment I’ll clean out that cubby and stock it with only a few books good for bedside comfort, a drawing pad, crossword puzzle book, and maybe a couple of “to read” books lined up (instead of an enormous jumble).

Of other things to appreciate about my situation, once again the steroid burst means that I have almost ZERO allergies. This never happens except while traveling to new places or when I’m on steroids and for a few weeks after the steroid burst. It’s a small luxury to have my sinuses feel so light and not swollen and to not have to blow my nose all the time. Yesterday I sat on the front porch and pinched leaves off several potted plants (could only use my right hand, ugh) and did not get a giant sneeze attack or have to take actifed or benadryl.

It it comforting that I can get anything or help with nearly anything at whim from Instacart, Amazon, or Taskrabbit. (And I have been doing that.) Money and these sorts of services replace what otherwise would be me asking for a lot of help from family and friends and community and really, public services. (Which I am also getting at least the family/friends, but it’s lovely to have the money to just hire people, somehow). If I want flowers, or chocolate, or food, or someone to fix the dripping sink or whatever, I have only to fill out some forms and stick in my credit card. It is a great luxury. (That most disabled people do not have.)

It’s sketchy to react by always playing the “glad game” like Pollyanna or being a patient cheerful invalid like Katy in What Katy Did, but it also helps. Like, every time I get up to get myself some tea, I think how much I appreciate being able to do that and I take pleasure (and pride to some extent) in all of it, in the entire process of simply getting myself some tea. Walking across the house, maybe I can look outside on the front porch for a moment and have a look at the world. Whatever level of ability or function I’m at there is something to appreciate. This sounds a bit nauseating I know. But it is sincere.

I miss work a lot. For a few days earlier in the week I was reading and responding to urgent work email. Right now I feel too drugged, stunned and distracted by pain, and messed up in general. I am exhausted. If I can adapt to the drugs over the next few days maybe I can start working. But it seems more likely (depressingly) that I need more time out.

Some other coping strategies: Doing very short sets of easy physical therapy exercises, then setting a 5 minute alarm on my phone for a “power nap” where I close my eyes and breathe deeply. If that leads to a real nap, great. If not, I have rested and put down my books and phone or computer.

I have not found a good video game for distraction. I need something turn based or not-twitchy, and not stupid or full of ads. May play through Monument Valley for the 3rd time. I was going to try the new Master of Orion (since I remember loving the original one), and it looks nifty, but it was so much like actual work and has so much “executive function” that I lack right now, that I am not doing it. I still play Threes. (top score in the low 30K range) Nethack is nice but it’s too hard to hold up the computer. I play clash of clans (with my family in a clan) and dominations but am a little bored with both. I can recharge things for Ingress from bed, but am running out of power cubes. Not so fun when I can’t get out.

One bad thing which I will complain about, besides the skin pain and “shocks” and burning and allodynia, is that my left side feels wrong and strange. The muscles don’t work right along with the deep ache, and they spasm. I think that is maybe straining my other back muscles on that side. Sitting upright and walking and bending over feels hard and wrong. What if it stays that way…. If it does I will adapt. My ribs hurt and my guts in that stripe on the left around front and back, feel all wrong. It feels hard to use my left arm to reach or do anything since it uses some of those side muscles, I guess. Especially reaching upward or outward. The muscles in my low back just underneath the “stripe” are very sore and messed up. It is probably temporary as part of the shingles inflammation or infection of the nerve.

From looking at charts I think it may be T8 or T9. Hard to tell… Just below or at the edge of my ribs. To me, it seems wider than just one stripe, because it goes from my lower rib to my navel. Maybe it’s T9. Interesting to look at the nerve/dermatome charts, anyway!

I hope to be able to leave the house and go to my sister’s house this Sunday. If I can make it into a cab and up her stairs, I can lie on a splendid couch and Danny and I can see my son, my sister and my mom and nephew and brother in law and 3 cats and 9 chickens and Laura’s beautiful chaotic experimental garden. It’s Danny’s birthday today and my sister’s birthday tomorrow so I expect someone will be making cake and probably knowing my sister and brother in law, some sort of special fancy amazing hipster cake.

Armor a mile thick today

Posted on by Liz

This story starts out boring but bear with me, it gets funny and there is a punchline. So, there’s construction in my neighborhood on Misson as they dig up the street and repair some sections of sidewalk. Over by the Big Lots there were a bunch of barriers and hastily constructed ramps to the street and back around some of the work. I went out around the giant orange barrier things and found an SUV blocking the ramp up. I could go back out into Mission or go even further out into Mission. Both not good choices.

Sidewalk construction barriers

I ducked half under the SUV’s bumper and got onto the ramp while holding onto the corner of of the car so I wouldn’t tip over. As I got onto the sidewalk clumsily an older lady with a little kid came up and I asked if it were her car. (Yes). I said, Well hey. You are blocking the ramp! There’s construction so it was hard to get up. She started yelling at me. I can’t remember what! But it was mean. “You should go on the other side of the street then!” At one point she said that I should read the sign — if I could even read! Because the date wasn’t for today and she was parked at a meter! Arrrrrgh. Thanks for the implication I can’t read!

I finally yelled back, “All you had to do is say, sorry for blocking the ramp, BUT NO, you had to be a huge screaming bitch!” And zoomed off filled with fury and sadness.

SUV blocking the ramp

Hahahah! So much for my composure and wisdom from yesterday! Some days no bullshit happens and some days it does. Some times I can handle shit and sometimes I fly off the handle. I got over it and laughed at the whole thing before I had gone another block.

So, I got to the notary office and hauled myself painfully over the non accessible threshold. The notary guy was helping someone else and kept giving me sort of dirty looks like I should not be there. The dude he was helping had to go get some extra documents from his car a few blocks away. As he left, the notary told me to wait till he finished with the first guy. I said something neutral like, it’s good to finish with one thing before you move onwards. All fine so far but I could feel that he didn’t want me there.

Half an hour later he filled out my form and got my thumbprint and everything. Another dude came up and …. unbelievable… he told me to wait until he helped Dude 2. I thought about calling him out on it. Calmly asking him, did you notice that you asked me to wait for you to finish with that first guy? But then, did not ask the next person after me to wait for you to finish with me? Why was that? I looked at him and thought about how his tension would then turn to outright anger. It wouldn’t matter how I asked him to discuss it, he would be hostile and would escalate, 99.9% certain.

Decided it wasn’t even worth it. People sometimes assholes, life not always fair, minor inconveniences happen, we all have annoying things. I just hope he did the form right, unlike notary #1 a week ago.

I headed home. (Negotiating the crumbling, soft, rutted ramp with no problem now that there wasn’t a car blocking it.) At the corner of my street, a tall white guy with very close shaved grey hair started yelling at me. “You almost hit me on that thing, it’s dangerous! You’re not even sick! If you are sick, you’re a waste of space! The problem with you people….” (That again!!!!!) “The problem with you people is you just don’t think.” I said that I was sorry I nearly hit him. And was glad I didn’t run into him. (Sincerely.) (Though he was rude and mean.)

He continued yelling. I then said (we were going the same direction, him next to me) Ah, you maybe didn’t hear me, I just apologized for not seeing you and nearly hitting you. I’m glad I didn’t run into you.

(More screaming)

“OK. Well. I hope your day gets better….”

“I hope your LIFE gets better!”

“My life is pretty great actually.”

He responded, “Well the problem with YOU is, you get all the pussy, and I don’t get any of it!”

I am sure I cracked up laughing at that point but I only remember staring at him incredulously.

“You know, you are right! That is completely true, man!” I couldn’t tell at this point if he was joking! What the fuck? But I’m laughing, maybe he’s joking?

“You steal everything. You stole all the pussy and that’s UNFORGIVEABLE. The rainbow is for everyone. YOU STOLE THE RAINBOW!”

“Oh, wow. You are 100% right. The rainbow IS for everybody! I mean, rainbows! They’re great.” Now I’m just resigned that he’s not at all joking, and I’ve incorrectly started fucking with him and he’s going to punch me in front of my own house. And yet my mouth runs off. And his saying that I stole the pussy and the rainbow also weirdly made me crack up while it was also super sad.

“Yes it is. The rainbow means something. It’s from God. It’s got a purpose to exist. And you don’t. You shouldn’t exist.”

It is funny that you can’t tell if people are going to hate you more if they think you’re not “really” disabled, or if you are! Sometimes, a stranger’s gaydar, lavender hair, and maybe wearing your kid’s My Little Pony Rainbow Dash t-shirt trumps disability completely! Jeez, first they came for our curb cuts but they couldn’t stop there, they had to steal the pussy from the men and the rainbows from God!!!!

Somewhat spooked and really, I thought I could defuse his anger with a little conversation, right up until the point of no return. Now he knows where I live!

Deep breaths, carry on, blogging it because I feel the impulse to share — though now it’s like I’m horrible for making fun of this poor messed up dude. I’m so tired! How can all those things happen in just going 3 blocks from my house and back?

Rainbow power!!!!!!!!!

Rainbow butterfly unicorn kitten