An exciting non-event

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.

Related posts:

Six month celebration: Sojourner!

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?!

Related posts:

Pak protector in utility vest

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!

Related posts:

Weird patters

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.

Related posts:

Quick fix for my scooter

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
Related posts:

Thoughts on UberAssist

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.

Related posts:

Stuck at home with shingles

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.

Related posts:

Armor a mile thick today

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

Related posts:

Accessibility at the beach in Tulum and Akumal

I just got back from a fabulous vacation in Quintana Roo. We stayed in Tulum, in a small, funky, beachfront hotel zone, and then in Akumal. There is a lot to say about the trip but first of all, here are my notes on access, since that’s what I was looking for when I was planning the trip. This will be a Very Long Post!

My hopes were for warm water, beach access to calm water for easy snorkeling, small hotel right on the beach, and some scope for scooting around that wasn’t just in a single hotel. Both hotels I contacted in Tulum and Akumal were happy to explain the accessibility. Neither hotel was completely wheelchair accessible; what I wanted was just reasonable possibility that I could walk a few steps and be on the beach, and also that I should be able to leave the hotel on my own with a wheelchair or scooter. Akumal was my main goal, because I read online on some forums that a wheelchair user lives and works there and that the town has some curb cuts and ramps to accommodate them. That sounded promising!

For the flight to Cancun and back to San Francisco, United flight attendants let me put my TravelScoot (disassembled, not in a bag) in overhead bins. My partner and son took care of that. Without help, I would most likely have had to check the scooter at the gate. It was so nice to know that my scooter was going to be OK, not break or freeze in the cargo hold or be lost and was under my control. What a huge relief!!

(I do not know how anyone uses the TravelScoot duffel bag. I tried it… once… in my garage. It was like trying to stuff a floppy-jointed tyrannosaurus skeleton into a sausage casing. Not gonna happen, ever!)

Cancun airport was nicely accessible. It was extremely easy to get cabs. I had booked a shuttle ride beforehand with DiscoveryMundo. They were just outside the terminal building exit with a sign for me in a crowd of other drivers. It was a giant van we could have fit 10 people into, and probably twice as expensive as it had to be. I will just get a regular taxi when I go back. I appreciated having things arranged, though, and our driver Julian was extremely nice.

Our small Tulum hotel, Piedra Escondida, had about 10 feet of deep sand in the walkway up to the main entrance and lobby. Danny had to carry it and I walked with my cane. Once I was in the lobby, access to the indoor restaurant was flat but there was a step to get outside or to the registration area. We had to get across another 100 feet or so of sand to get to our little beach cottage, which had a tile paved porch and another small step to get into the room. I was able to bring my scooter inside and charge it with no problem. Our cottage (#6) was nicely positioned for me to get across short, maybe 10 foot stretch of deep sand to a grassy area I could more or less scoot over to the street out a back gate. It was rough but I could do it on my own (just barely).

porch with hammock and beach

This hotel would be reasonable for someone who, like me, can walk a little bit. And only for the most daring of manual chair or TravelScoot users or someone who does not mind getting help across the pockets of deep sand. The porch was nice enough, with a hammock, two adirondack chairs and a view of the beach and ocean and coconut trees, that I would not have minded staying on the porch quite a lot, which is what I did! The lobby was nice to hang out in, shady and relaxing. There was wireless, at least from the restaurant and lobby, and we could also get wireless pretty well from the porch but not the room. The bathroom was not wheelchair accessible and there was a shower with no bath. A nice shower though! The running water is all salt water. You get bottled water from the hotel or the mini mart to drink and brush your teeth with.

The restaurant for the hotel was good, a bit expensive, but very nice food, lovely people, right on the beach and outside, with wind screens up.

There was a constant warm breeze, more intense at night, which seems normal for this part of the coast for April. I am always cold where I live in San Francisco, despite wooly socks and long underwear. It was nice to hang out all day long in nothing but a bathing suit and sun dress or skirt.

liz in sundress at beach

My forays into the street were fun but of fairly limited scope. There was a short stretch of hotels, restaurants, small shops with textiles and beach towels and souvenirs, and a very nice minimart. I bought a rainbow flowered iipil (the kind of pretty white embroidered thing that in Texas, if dress length, was colloquially called “a Mexican dress”) and some flip flops in the kiosk next to the minimart. There were ATMs and a couple of kiosks where you could book tours or get advice, maps, and so on. They were both helpful. There was a very short and not very well ramped stretch of sidewalk in front of two restaurants but other than that I was scooting in the street along with a lot of bicycles and some cars and trucks. It was easy to get a taxi any time of day or night. South of our tiny strip of businesses and beach and tall trees, there was a rocky sea wall or pile of riprap along the little road, no trees, hot and dusty. I did not go past this sunny stretch of road to the main beach of Tulum’s hotel zone where I think there are a LOT more small boutiquey hotels including some gay nude ones and a lot of people who do yoga and more restaurants. None of the hotels in the “north” bit of the hotel zone, where I was, had good access to the street for a wheelchair user, but again, they all seemed vaguely doable for someone who can either walk a tiny bit or who can power through some gravel in a manual chair.

I walked onto the beach I think three times. It was a little bit steep for this to be easy for me. In short it was difficult. The water was rough. I am a skilled swimmer still (if not strong any more) and very good in ocean waves from a lifetime of enjoying bodysurfing and boogie boarding. But the deal breaker for me was uneven footing and shifting sand underfoot and also, rocks. I had short dips into the water but could not swim around as I would have liked. It was still relaxing and awesome to be there. There were iguanas! I also spent a lot of time watching the magnificent frigatebirds and brown pelicans glide overhead. Danny practices his ukelele a lot, and we all read constantly on our Kindles.

Tulum Pueblo itself looked interesting. It was maybe a half hour (or a bit more) walk away from our hotel, with a very nice sidewalk and bus stops along the way. I did not get to explore the town. Many people in the Hotel Zone (or, as I thought of it, the Gringo Zoo) rented bikes to get to the town and its reportedly great restaurants. It was just too hot for me to want to go that far and a bit too much bother to get a taxi to town with the scooter. And so easy to eat at our hotel and the Mateo’s Gringolandia Grill or whatever it was, across the street (which was very nice, relaxing, had good food and live music; possible to get into without a step if you went through the gravel parking lot; with one step if you went from the tiny stretch of sidewalk).

We had two day trips out in taxis. One day we went to the Tulum archeological site, aka the ruins of Tulum. I read up on Tulum’s history, online and in several books, and was excited to go there because it was one of the places I had read about and seen in engravings a long time ago from my dad’s books by John L. Stephens with the engravings by Catherwood. (Alternate universe Liz, I think, would have hopped on the translating Mayan glyphs train at University of Texas in the 80s, when they were starting to make major progress. I had that dream!)

engraving of tulum ruins from 1844

I read Friar Diego de Landa’s “Yucatan: Before and After the Conquest” in the Dover edition with an interestingly socialist introduction from the 1930s. I have read the Michael Coe Maya book several times in the past but did not re-read. (I will do that now, though.) Other books — Tulum: Everything You Need To Know Before You Go To the Ruins, which I would say delivers well on its promise. It has some of the history of the area ancient & recent, including explanations of the recent development of the area. I really liked this book a lot, enough to want a paper copy of it. Another excellent book: Maya for Travelers and Students: A Guide to Language and Culture in Yucatan. I went through it and wrote out all the Mayan words and phrases, eventually making a set of flash cards as I hung out in the hammock gazing at the ocean. I may continue learning Mayan. More on the history of Tulum, and on language, later in another post. This is supposed to be about access!

So, the Tulum ruins. After a 10 minute ride we got dropped off by a taxi driver at a quiet entrance on the coastal road side of the ruins. From there we went down maybe a quarter mile or less of flat, not too gravelly, path. The entry ticket booth is accessible and so were the truly palatial bathrooms at the entrance. Past the ticket line you can get a coke in the gift shop provided that you can walk up a step, or can fly. There was a cool diorama just past the entry, then some hard limestone paths, a little gravel but not a problem, to the world’s scariest steepest ramps ever. I appreciated that there were ramps, as otherwise it would have been a lot of stairs. The TravelScoot took the steep, corrugated slope like a champion. As it only has one motor in the hub of the left wheel (one wheel drive) it helped, going up, to lean heavily to the left. If you cannot do this, or are in a manual chair without someone to push and you are not a Paralympic athlete, you will be toast. Toast!

Once up the scary-ass ramps there were some signs and then a flight of many steep stairs to the Cenote Tower. I did not try that. Instead I went through the Northwest Gate in Tulum’s walls. Much of the paths in the central area were pretty flat and lightly graveled with a hard limestone surface underneath. I think my butt is still bruised from this foray into Bumpy Road land. I went up to the beach view of the main “castle” building and the Temple of the Descending God but it was steep and gravely and lumpy and sandy. At some point I stubbornly plowed into deep sand, and Danny had to carry my scooter out while I hobbled (a scene we were to repeat several times over our week long trip as I am often imprudent). The beach was closed off since turtles nest there. There was no way I could go up the hill to the Castillo. Oh well! Plenty of other ruins to sweatily look at and Ingress portals to hack. Danny scouted the exit at the Southwest door, or gate, which had stairs. Beyond it were some more sand and stairs and a bridge and more stairs to the real exit. We opted to go back the way we came. I zoomed down the scary corrugated steep ramps past wide eyed other tourists poking each other and gasping out things about the lady with the “moto”.

So: Tulum ruins. Doable, barely, for a wheelchair user if you have a powerful motor, big tires, or are very strong, or have someone to push you who is quite strong and heatstroke-proof. There is not a lot of shade in the central ruins. There is a lot of cool stuff to see in the bits where the path isn’t hilly or sandy. It helps to have a guidebook or just look stuff up on your phone if you have a good data plan (which is what I did, as well as playing Ingress like a total fool). Without the background you might just be like, OK there are some big ruined buildings here, pretty cool. With some of the history I think it is much better. Tulum was a sort of trade port and was founded in a sort of Warring States period around 1200 AD. The walls were because of that situation persisting over hundreds of years, with nobility living within the walls and most people living all over the surrounding area.

From the exit there was a little (free) motorized open bus shaped like a train, not accessible. As usual, we climbed onto it and Danny and Milo carried my scooter up. No one objected. The train decanted us into a giant parking lot area with booths of crafts, textiles, onyx chess sets, coconuts, a Starbucks, and little restaurant-cafes. It also had a very tall, maybe 70 foot, metal pole with guys on it doing something ritual and very acrobatic and amazing to the sound of drums and flutes. They turned out to be Los Voladores de Papantla. I donated some money to the guy who explained it to me. My Spanish is rusty but was really not too bad, the whole trip, and I could communicate complicated things well — just a bit ungrammatically. Anyway, respect to the Voladores and their ritual. If you read through some info on them you will see some of their history and controversies like whether women are allowed to become Voladores (yes in some areas, no in others). I bought a black sundress with cut lace inserts to wear on the beach, a mayan calendar tshirt for Milo, bow and arrows set with stone tips for my stepdaughter and nephew, a small, gorgeously woven bag and a beach sarong thing with turtles on it, and god knows, I cannot remember what else, but I bought a hundred dollars worth of it. This artesanal courtyard / flea market/ parking lot was hot and there were some vendors with hustle all around; I cruised around saying hello but remaining non committal until I had looked at everything. As usual there were some sidewalks but also lots of areas with light gravel, bumpiness, or a step (like to get into the starbucks). I found it very pleasant sitting in a little cafe where the trains stop (no step!) drinking from a coconut and eating fish tacos with Milo and Danny. We hung out there feeling like insiders as we watched several cycles of the trains pull up at which all the cafe guys would pop out with coconuts to entice the thirsty tourists from the ruins. I picked that cafe because it was playing Celia Cruz oldies. The food was great and not expensive. I asked to eat the inside of the coconut expecting they would just break it open and I would scoop out the inside. Instead they brought me the insides already cut up in a giant martini glass with a lime and hot sauce. So delicious!!

We went the next day to Xel-Ha. Despite reading about it online I could not picture what it would be like. It is a giant eco-theme park which reminded me in size and scope and some of the trappings, of the San Diego Wildlife Park. It is huge! But not as constantly scripted feeling as, say, Sea World. I got a discounted entry for being disabled. Entry is expensive, about 90 bucks per person. But that is including food and drink and the snorkeling equipment rental. This whole park was nicely accessible in many ways and very well organized. Entrances to things were level. There were accessible lockers and bathrooms everywhere. The lady at the ticket booth gave me a really really nice access map of the park, with paths of level access, slightly difficult access (i.e. bumpy path) and really not gonna be accessible paths, marked in green, yellow, and red. So nice! It was like a dream map!

It took Milo and I a bit of time to figure out how things worked. We left Danny (not a swimmer) in one of the many palapa-shaded restaurants where he hung out (he later got a massage at the aromatherapy spa). There are various locker rooms in the park which are color coded. We picked the purple station. You check in with your wristband, pick up swim fins, a mask, and snorkel, and get a locker key with a color coded lanyard. We left most everything in the locker but I had a beach bag for towels and stuff. They also give you towels and I think a bag, if you ask. But I had them already. Lifejackets are at the water’s edge. The park stretches around a huge, shallow, calm lagoon, and all the way around, there are many places where you can get into the water, usually by a couple of steps with handrail. I did not check to see if and where the level water entrances were.

We got in the water in several places over the day. I preferred the areas nearer to the ocean, where the water was salty and clear. We saw a zillion fish including a barracuda (omg). I did not have to swim any distance at all to see fish and most of the time didn’t wear the fins (which kind of hurt my ankles) With a lifejacket I could float around and just watch fish go by. In the freshwater end of the lagoon the water was more murky, there were more fish, but also more floating weeds and you couldn’t always see the bottom, which I find irrationally scary. (Much of the time as we got in or out there were people having panic attacks on the steps, to be honest.) No one bothers you about anything, you are free to roam around, snorkel, get out, swim, whatever.

There are special photo spots set up throughout the park where you can push a button and your photos get taken automatically and I think uploaded to a usb drive which you take with you. I didn’t look at the details of how it worked. It seemed well thought out.

There were dolphin, manatee, and sting ray encounter areas which you had to pay extra for. If I went back, I would do the dolphin swim. There were a lot of buffet restaurants, stands where you could just grab a cup and quickly fill it up with soda, shops everywhere, bars, and shady seating areas, a “hammock jungle”, a giant playground (not accessible – it was over sand) with short slides into the lagoon and one of those wood and rope kiddie-habitrail systems up in the trees. There is a long path and also a shuttle bus to the head of the river mouth where you can float down into the lagoon in giant tubes.

Fun but very exhausting. The park is HUGE. We only saw maybe a quarter of its paths and things.

The next two days I laid on the porch in Tulum eating cookies from the Mini-Super Pipienza, writing out Mayan flash cards, looking at birds and the ocean and trees from my binoculars, and taking pain meds.

Onward to Akumal. Akumal was like 1000 times more awesome than Tulum for me. Our beach cottage was extremely nice, bigger than our actual house in San Francisco, had a kitchen, 2 bedrooms, a huge patio, a paved walkway that got me 3 steps from the beach and to another hard limestone walkway (the Akumal Trail). The cove is full of boats, people, the beach is also the public town beach, so is very lively. There were more birds. We had a little semi-private corner of the beach with lounge chairs, and interesting rocks to look at. The point had cannons from a Spanish shipwreck from the 1600s. It was very nice to wake up at 6am, make my own coffee and some toast, and scooter myself the 50 feet to the tiny beach. From the paved bath to the cottage, there was a single step…. there was a step inside the cottage as well. To get onto the beach there were 3 steps with handrails. The beach is nearly flat, and not wide, so from the steps (and the dry sand area – the tide doesn’t vary much) it was only maybe 20 feet to get into the water.

beach with pale blue water

From the path I could go on my scooter to the Centro Ecológico, many small shops and restaurants, dive shops for equipment rental, a whole other hotel (I didn’t go that far but it was clearly possible) and then out the little road, or on a public access path, to the Akumal beach archway (the “arco”). Outside the archway was my favorite haunt, the Super Chomak Minimart where the other wheelchair using lady in town supposedly worked, though I never did see her and I felt a little too shy to ask after her. You can buy staple groceries there like fruit, potatoes, bread, pastries, cookies, juice, butter, milk, and any sort of thing you would want for the beach including clothes. Sorry to go on about the corner store but I do love a corner store. The women who work there feed the stray cats (which are numerous and a bit mangy) and they are very nice.

Accessibility was not perfect, ramps steep or bumpy, paths a bit rocky. But navigable in a manual chair. I could have done the whole thing in my Quickie Ti (if I had a bit more stamina).

The path to the point, less than a city block away from our casita, had parts with deep sand. Danny carried my scooter across them and I hobbled. Then we went on a very bumpy rocky path around the point where there are tide pools. Tantalizing. I don’t have the stamina and should not have tried to go down this difficult, exhausting path just to see what was there! I am somewhat covered in bruises from the whole trip, I have to say.

The Lol-Ha restaurant was super nice. Part of it is a Thai restaurant and part is local cuisine. The access to the outdoor bit was very nearly flat but there was a tiny …. maybe inch and a half high …. bump into the restaurant. The indoor part had a steep ramp, too steep for me to get up on my own, I think. The food there was great. I also had very good fish at La Cueva del Pescador and nice but somewhat blander fare at the Turtle Bay Cafe, both wheel-able through some mildly gravelly paths. There were mariachis in the evening roaming about, including a group with an arpa who played joropos, which made me super happy.

The important thing was, I could get around the entire area without stalling out on gravel or sand!

With the scooter, also if I were more into sitting up and scooting around, I could have gotten across the highway into Akumal Pueblo itself, which is tiny but I think would be nice to have a look at. People recommended restaurants there but mentioned it is not particularly scenic.

Milo and I rented snorkeling equipment for 2 days. The water was calm, sand perfectly shallow and gently sloped, water clear. I really liked that we could just go in the water to snorkel any time with no fuss at all. We saw so many turtles! Fish! Sea urchins! Mostly green turtles, and one Hawksbill turtle.

This bit of Akumal beach has many tour groups coming through as well as being the public town beach (free to residents). So, people start arriving on buses around 10am and go into the water with guides in groups of 8 people. There is some limit on how many snorkeling groups they let into the water at once and I think a daily limit on the number total per day. It was a lot of people but it seemed well handled and there is an orientation video in the Centro Ecológico that explains the rules about not touching any coral and staying well back from the turtles.

I played with some local kids one day (mostly by giving them all the floaty rafts from the hotel) and had slightly wistful thoughts about how much I would like to really play, but it being better on all levels to stay back and just enjoy their lively energy and happiness. It was frustrating also not to get to snorkel as much as I would have liked, which would be ALL DAY. When I was a kid I would stay in the ocean for hours until my lips turned blue and my grandma would make me get out. I have nice memories of lying down in the warm sand and I still like to do that, just getting covered in sand and getting my face right up to it. I do not like to stop doing things when they’re fun and exciting, obviously. At Akumal I never felt cold at all (amazing) but even taking a ton of pain medication (for me, a ton, not really a lot on the big scale of things) I exhausted and hurt myself swimming around and trying to walk more than I should. With a longer stay I could swim short amounts several times a day and rest more with less excited (self imposed) pressure to scout around and “see everything”. So my plan is to try to go back there for a few weeks at a time, maybe this summer, work from there, and swim a lot. There was decently fast internet which seemed quite reliable. It would be ideal rehab for my ankles and general strength, if I managed the pacing correctly.

I noticed in driving through Playa del Carmen (a lively, large town south of Cancun) that a lot of the sidewalks had curb cuts. It would be fun to go there and cruise around.

One last problem I had was that snorkeling has the temptation, if not the requirement, to look ahead of you and my neck and upper back do not like to do that. I am too stiff to do it well. I got along ok by swimming a modified sidestroke, mostly floating in the life vest, or by going on my back, then flipping over to look straight down. My upper back and neck are still in bad pain from trying to do this.

No one gave me any hassle for the scooter or for having purple hair. Better than at home in San Francisco. Obviously people were eyeing me askance everywhere I went, but politeness or shyness prevailed. When I got to chatting at length with people I would explain: arthritis, pain, can walk a little. No one found that weird, prayed over me, acted like I was somehow too young to be disabled or wasn’t disabled enough or performing it correctly, or told me about the fish oil homeopathy their grandma’s friend does, or stuff like that, as I encounter almost daily…. People also were universally quick to explain the details of access or tell me good places to go that were relatively level. The dynamics of that very pleasant courtesy and thoughfulness may be also due to my being a rich tourist in a not very rich area that depends on tourism. I could not help but notice it though. Thank you nice people in Akumal and Tulum.

In general the whole trip was physically challenging for me (how not — I can barely do the laundry or get out of my house to get groceries in my own town!) and yet it all seems very possible now. I would feel confident going back on my own. My goal was to find a place where I can have a real vacation, not traveling by going to tech conferences or things for work, ie traveling while not only doing my regular job but also conference talks and attendance! I think that kind of travel is at least something I shouldn’t try to do for the next year or so. Or maybe ever or very rarely. Maybe that time has passed. I like traveling and I love conferences and the intensity of meeting tons of people quickly and also I love public speaking. But it has not gone well for me the last few years as my mobility is worse and pain levels through the roof. So, Real Vacation. What a concept!

Feel free to ask me questions about access in comments and I can try to answer! I hope this helps someone out when they are wondering what might be marginally accessible on the Quintana Roo coast.

Related posts:

Like a warm pool

My new stomping grounds are at a physical rehab swimming pool in San Francisco. It’s called Herbst Pool and it’s at the Pomeroy Recreation and Rehabilitation Center. I used to go to the Betty Wright pool in Palo Alto (that then became C.A.R. and then Abilities United). This seems quite similar. The Center was started in 1952 as a rec center for people with disabilities. It seems to have a lot of day programs, gardens, playgrounds, a gym and art classrooms, and this awesome pool where the water is kept over 90 degrees. This is the important part to me. Cold is painful on my joints and I get stiff quickly. But it also is directly painful on my “bad” leg. Regular room temperature air on my leg feels like burning ice which is why I’m a huge fan of long underwear or at least secret leg warmers (under my jeans). So, warm water RULES.

Pomeroy herbstpool

Like the Betty Wright pool, Herbst Pool or Pomeroy Pool (whatever you want to call it) has a very wide sloping ramp to enter the water, and a variety of PVC wheelchairs useful for going down the ramp. There are also very shallow and broad steps with handrails. It is easy entry into the water. They have all sorts of adaptive equipment for the water. I don’t need that stuff but I appreciate the easy entry and not having to use one of those slow, free-show lift chairs into the water. The pool is a beautiful and relaxing space as there is a skylight, and one wall is entirely windows looking out at the trees bordering Lake Merced. The walls are covered with cheerful murals of cartoon whales.

The locker room and especially the main pool room are kept pretty warm. There are many heat lamps in the pool area. Really fantastic if you can’t tolerate the cold. Of course I always wish it were warmer and had a heated floor… and a sauna…. but it’s the best I’ve ever come across.

Once I am in things are pretty good at the moment. I can walk around slowly in collarbone-deep water, and do squats and other excercises hanging onto a kickboard. When I am not in a flare up, or, in some mythical past before my ankles went awry, I am a strong and good swimmer with good endurance and a long history of loving the surf. I feel super happy in the water, light and gravity-free (as long as it is warm). I’m going every week for physical therapy in a small group that’s run through Potrero Physical Therapy (note: they are awesome.) And I am trying to fit in at least one other pool visit per week, hoping to get to 3 hours total a week.

It is hard for me to get to Pomeroy. When I was gearing up to do this I didn’t find directions on their site for how to get there by bus, and it was really unclear on Google Maps from their address (on Skyline) where the entrance was on a rather large and confusing block of land between three streets. This matters to me because it can be non-trivial for me to get from point A to point B even in my scooter (because of pain, or nasty weather) and if I do’t know exactly where entrances are and what a building or “campus” is like, I’m not going to take my manual wheelchair for sure as it can easily be too difficult for me to go it alone. So here are the details of how to get there for anyone else who is thinking of rehab at this pool.

And, while taking the hour+ long journey from my house to the pool and during the somewhat boring hour of walking back and forth I often think how I should write up a post about the pool. Here it finally is.

Getting to the pool

There is parking and drop off that is level with the pool entrance, which is on Herbst Road and up a little hill. There are at least 5 blue parking spaces and some extra. Other parking is along Herbst and you will meet that “hill” along with a possibly significant walk. From the drop off point in the closest parking lot (where paratransit will drop you) It is a pretty short walk in to the pool. I haven’t measured it or tried it yet. It is too much walk for me to do with out a chair.

There are 2 buses that go nearby, the 23 and the 18. The 18 stops on Herbst Road just outside the Rec Center campus. To get to the pool you will have to cross a non-busy street and then go up a steep slope (a full story, not something I want to do in a manual chair but might in a pinch). There is a ramp for this but again it is at least one full building story high. At the top there is a little garden with benches, and a small (not accessible) playground and grassy area for toddlers. I like eating lunch there. (I think on the other side of the campus there may be an accessible playground.)

Pomeroy courtyard

To take the 23 (the bus I ride to get there) you have to get off at Sloat and Skyline just north east of the zoo. This street crossing is a complete nightmare. It is a 6 or 8 way stop, with cars coming very fast. There are 3 medians you will need to stop on to cross another section of the road. At least it has medians! This is a crossing I would not recommend to anyone blind. Instead get off the 23 at the zoo entrance stop and cross there where there is a light and only 1 median and traffic isn’t coming from 6 unpredictable directions. This will add another 15 minutes to your journey. The Hellish Intersection scares the crap out of me every time. But I still use it because I need to get back home so I can work. The 23rd itself is a pleasant bus, not crowded, bus drivers nice and not super stressed; they are the old style buses with an unfolding ramp instead of a lift. It comes about every 20-30 minutes depending on the time and day. Note, the bus stop going inbound is not marked well and is on one of the medians in the center of the Hellish Intersection.

Hellish intersection sloat skyline

It is half a mile from the Sloat and Skyline bus stop to the entrance to the pool, which takes me about 10 minutes to traverse. One minor problem I have is that the sidewalk along Herbst is often littered with eucalyptus nuts and branches, so I opt for going in the street. Not a big problem as the street isn’t too busy and it’s wide enough to have room.

cost of the pool; who goes there
The pool membership costs $50 a year and you have to have a doctor fill out the application. Then, the swim sessions or exercise classes are something like $8-10 each. There is not really a “drop in” mentality but instead you are expected to sign up for a 10-pack card at the least.

This high cost, and the difficult access, may explain why I have never seen any other wheelchair users at the pool. It is weird to feel like a damn unicorn at a place specifically meant for disabled people. The physical therapy class are mostly people with injuries or recovering from surgery who have PT for a short time covered by their insurance or Medicare and the arthritis exercise class seem to be retired people trying to keep fit. The other main users of the facility seem to be disabled people who have personal care attendants, or who have developmental disabilities and are there as a sort of day camp experience doing garden work, art classes, and basketball. Lots of wheelchair users around the grounds and buildings but none at the pool at the times that I go there. I can see the community that they serve. And I am an outlier in that community and yet this place is also *exactly* what I need (integrated into my life all the time). I do wish that the pool had some sort of option for low(er) cost access, not for me, but for people in the community who are living on disability benefits who would never be able to afford this and yet who are not “in the system” enough to get bused from a group home on paratransit (as I think many of the people hanging out at the Center are).

The other swimmers I have seen are all infant and toddlers with parents bringing them for swim lessons (with no relation to anyone being disabled). It is just a nice warm pool where they have baby swim lessons, like at Petit Baleen. It is lovely and cheerful to see all the kids coming out of the pool. They always seem happy and calm and sort of stimulated. And they make me happy as I think of the nice memories of when Milo and Ada were small.

Probably the kids’ swim lessons are basically a way for middle class non disabled people to financially support the rest of the facility. (Which also takes donations.) And, I think it may also get funding from places like Target that look for a place from which to hire disabled people for low pay and some sort of tax break; whatever happens there, I hope people are paid fairly.

Extra note on Janet Pomeroy who the Center is named after. Thank you wheelchair sports camp lady!

The facilities of the pool
The building itself has automatic doors. There is a station where you can check in and pay for your session. Also two vending machines with drinks and snacks.

The women’s locker room has a big heavy door quite difficult to open. They need a push button for the doors. Inside, there is a (wet) floored room lined with benches. There are a few hooks to hang coats or bags but no lockers at all and no curtained areas for changing. It is just one big room to change in. Probably that is to fit a maximum number of people (and wheelchairs?) into the room. The outcome of this is that many people lock themselves into the three bathroom stalls so I make sure to use the bathroom outside the locker room by the gym. Aside from this minor annoyance I do feel critical of the situation as the upshot is old ladies who have had hip replacements changing into bathing suits in a slippery tiled floor bathroom stall seems like a recipe for badness. (Add in an incoming and outgoing class of non-disabled toddlers to imagine this completely.) I think they are dealing with this by building a new (unisex) changing area for wheelchair users or people with attendants, in the main area of the pool. (The Abilities United pool also has this.) One last bitch about the locker room, it has no tampon machine. Come on folks. It’s a pool bathroom. What more important place are you going to be where you will need emergency tampons?! But I digress.

There are nice showers in the locker room, one with a curtain but all the rest open. The water is hot. Yay. The locker room has a heavy difficult door to get into the pool area.

From there it is cake; there is another shower for rinsing off near the pool and there are some open cubbyholes to put your stuff in if you don’t want to leave it in the (non-lockered) locker room. I notice that getting into the pool many people have both flip flops and walking canes. Some thought to this common situation would be good and it coudl be solved with another set of cubbies and some sort of cane holder that would take twenty-eleven canes. There is always a pile of flip flops and canes right at the point where the handrail begins! Plus, my scooter unless I am confident about the walk from the shower area to the pool and back.

Herbstpool window

emotions and memories of physical therapy
I can’t imagine how many of the ladies in PT with me manage the trip there or even the walk from the parking lot. It is always hard to remember how that works until I get back into that territory of ablilty. Driving + hobbling. I was there for years.

I remember so many times of “rehabbing” in pools over the last 20 years. At Valley Medical Center in the 90s it was depressing and squalid and yet the warm water was so freeing. I could move freely and learned some good exercises. It was hard to talk with the other people there who were all older women while I was in my 20s with a mohawk and two septum rings. These days at least I am middle aged looking and not unacceptable as a possible conversation partner to ladies who have hip replacements.

It was always an ordeal to get to a hospital and navigate it and also inherently depressing. I have swum at YMCAs, JCCs, many city pools, and so on which I far prefer to going to hospital therapy pools. The public pools are way too cold for me to tolerate. I worked up from 15 minutes to 45 minutes in a “normal” temperature pool where athletic people swim laps, but it’s never a good experience. The SF JCC has the second warmest pool in town, plus a hot tub and a sauna, by the way, but it is extremely pricey as well as being ultra clean, pretty, and posh. The CPMC hospital has a warm pool, and you can get PT from it, so that is an option, but last I checked it was not only out of service but you couldn’t “drop in” extra at all; you have to get on a waiting list for a weekly arthritis class and if you miss two classes they boot you to the end of the waiting list. That will not work well for me. So I am very glad that places like the Pomeroy Pool and Abilities United exist.

I thought over my times at the Betty Wright Center which had really good cameraderie and where I got a lot stronger. I remember starting out at Betty Wright crying uncontrollably and feeling that I could not take it but grimly slogging through. That always happens both physically and emotionally. In fact at Pomeroy I know we all cry in there sometimes. Even if not from pain, it is because it is easy to go about our lives somewhat disconnected from our bodies. Being in the water and having nothing else to do but gently move around, it can be an emotional experience. I am thinking directly about what I can and can’t do, and comparing it with other times in the water, often ones where I was hitting rock bottom physically. I notice consistently my problem is not, “not trying hard enough” it is pushing myself way too hard and re-injuring myself or making everything worse. This is the new era of caution for me. Some of this holding back is possible because of working with a behavioral therapist who is very knowledgeable about pain, disability, and chronic illness. Thanks Dr. C.

(There is also the aspect that doing this 3.5 hour journey means I have to put on a lot of psychic armor to deal with strangers, bus drivers, buses with broken lifts, the Hellish Intersection, people cursing at me for being in the way, people staring, people (nicely or otherwise) inquiring about my scooter or wheelchair, people angry with me for not accepting their “help” properly, and all the other things that make leaving the house an Epic Journey. I armor up and am prepared for it all but it is not without emotional effort and cost. It is never simple. For me to get anywhere, I have gone through this process already and have likely had many challenges to basic equanimity.)

Last fall I could not go into the water without soft ankle braces. It hurt too much to have the tiny currents of the water, wiggling my ankles around unpredictably. Right now I can do a lot of squats and toe-raises and walk back and forth for the whole hour. It’s great. I am not swimming yet as my knees and ankles (and i think back) aren’t strengthened enough. I cannot do things I used to be able to do in pool rehab, like write the alphabet with my foot in cursive. Nope nope nope nope nope nope! But, I have improved my gait (again) to be more even and to weight shift instead of limping or shuffling.

My goal right now is to get my ankles strong enough that I can drive to the pool, park there, and use my manual chair. That would be less physically grueling for me than the 2 hours of bus ride and scootering. It usually takes 3 and a half hours out of my day to get there by bus. By driving, I could be gone from work 2 hours instead. That means I could swim more often. My real goal though is simply to maintain this level of water-walking and aerobic exercise for health, flexibility, and strength without injuring myself. This is already the longest stretch of time I have consistently made it to PT or exercise without messing myself up, and also doing daily PT at home. Huzzah!

A last note, huge props to Pomeroy staff for letting me use a conference room in their office one day last fall as I wanted to be at a crucial team meeting but didn’t want to skip my PT appointment. They let me walk in out of the blue and use their office and their wifi and close the door for privacy. Super nice of them. I was able to give one of their staff all the details about TravelScoots and other lightweight scooters in return. I still feel I owe them some free computer advice or help! But, I thanked them for supporting a person “in the community” (me) in their job and also for helping make Firefox better (ha!) by getting me to my meeting on time!

Related posts: