badgerbag

Why oh why do doctors try to “trick” you into not feeling pain by reframing it as “discomfort”. Once it has been established that a procedure is agony, do me a favor, doc, and quit trying to pass it off as mild discomfort. “Now, I’m turning up the stimulation level…” “Everyone feels it just a little differently.” No. If some fuckwit who isn’t in pain in the first place and who is wired with magic non-pain-feeling nerves feels it “a little bit differently”, I don’t care. It doesn’t ameliorate the bit where I’m crying in pain and telling the doctors that they’re hurting me to the extreme. It doesn’t calm me! It’s so disrespectful.

The electric shocks to my legs, especially the already very pained leg, were agonizing and after about 10 minutes I could not help crying. From there I progressed to shaking, feeling like I was going to vomit, uncontrollable sobs and near delirium. Believe me, I tried to be tough and stoic and breathe through the pain and I got the doctors to count to three and then do the shocks. I also communicated pretty clearly that I was in pain and what level of pain it was. But several times they would go “So, of course, be sure to tell us if it’s too much.” (With an air of disapproval.)

I explained it would be easier for me if they would count to 3 and warn me, so I could time my breathing to exhale on the shock. But, they could not manage. They would count to 3 and then wait RND(N) seconds before the shock would come. Arrrrrrgh!

Meanwhile they went on wittering about fossa and the different nerves and wavelength and amplitude and maximal reaction, to each other, but not to me, even when I asked them to tell me because it would be a distraction. They couldn’t tell me how many times they would do the shocks along a particular nerve. They’d do it and then up the “stimulation” and keep upping it until some particular wavelength happened. About an hour passed, I think.

Then we got to the part with the needles.

The first needle they stuck in the front part of my shin, up on the lateral side just under my knee, into one of the many places where I already hurt but which they had just been doing electrical shocks on. Keep in mind I have no pants on and am covered in snot and tears. Also I was in that head space where I kept apologizing to them. The needle hurt a lot and it didn’t stop quickly like the electric shocks.

I tried to deal and cry through it and remind myself it was temporary and I had to endure it, but at some point, I guess the point where it was TOO MUCH, I started screaming and begging them to take the needle out. Instead they wiggled it, because that helps them get a better reading.

That was fun.

I yelled some more.

They finally took it out about a year later.

Then they said maybe we should reschedule the rest for another day, and that I should get the pain clinic to give me some sedation for it, beforehand.

WHAT? I didn’t know I could be sedated for it. I guess it makes sense; they only care about the electrical impulses of the nerves or muscles or something; not whether I actually feel the pain or not.

Oh hai! You’re in so much pain you’ve come to us in a motherfucking wheelchair, which you’ve been in for 6 months, and we’re going to give you electric shocks on that very leg which is already in pain, and then stick needles in it and WIGGLE THE NEEDLES. But, it doesn’t OCCUR to us that you might want some pain meds before doing this.

I think the nurse who came in a bit later and offered to help me get dressed was one of the most beautiful things I have ever seen… she was so glowing and lovely… and she felt actual human sympathy… and was nice… I had already managed to get my own socks on, but it was a struggle. I would happily have taken her help.

I took a bit to lie there and cry on my left side, the position that is the least painful for me and the one I’m typing in right now. So, I pulled myself together a bit, and on autopilot, left. I had come into the clinic able to walk a block or two, and aching, but not in super bad pain. Able to think and work and function. I came out of only half the EMG process barely able to put on my own socks. As I left, wheeling over the cracks in the pavement hurt. It was harder to deal with wheeling myself because my low back muscles were spasming or something was just wrong in there. But, I had to get to the pain clinic at 3:15 for these trigger point injections which they promised would be super helpful.

After a bit in the waiting room with the tweakers and vague spacebots and junkies with the complex inner elbow tattoos, I ended up on a gurney surrounded by curtains, with my pants off and a gown and (joy) a warm blanket. The doctor was one I had seen before and he was really nice. I signed some things and explained I was in a lot of pain and unsettled and a bit terrified, from the EMG that I had just had. I got some reassurance about how the needles were small and once they started injecting stuff it would help with the pain and would numb everything. “Ah! Numbing the entire painful area and interrupting the pain signal to the brain! You don’t know how good that sounds!” But as the dude started poking me and drawing on me in pen to figure out where to inject, I started crying again, explaining that the poking really hurt, also, that I was just plain scared. The doctor was really nice to me again, but, when he stuck me with the needle, it killed, it burned, it ached, it felt cold and hot and super sharp all at once and I started to feel like I had to flinch, or yank away, or fucking die. I was shaking again. So, he stopped and we talked about whether to do any more or not.

Then he was like… “Wait, did you just have the EMG yesterday or something??

“No… just now… like half an hour ago. It was very horrible. And I still hurt from it.”

“Oh my god. We can’t do this now! You must be hurting a lot! You should have told us you just had the EMG! There’s no way!”

“Half the EMG. They had to stop because I couldn’t take it, and told me to ask you for sedation to do the rest.”

“OMG!!!”

“Ack!”

“No wonder!”

“I know. Thanks!”

So apparently they were planning anyway to sedate me and do some kind of deep injection in the piriformis muscle right next to or around the sciatic nerve. So he said that they might as well do all the injections then while I was knocked out. That will all happen another day.

THANKS MAN. That’s why they work in a pain clinic. They don’t want you to suffer! They care if you suffer or not!

I recovered a bit more, drank some juice, dragged myself to my car and drove here on autopilot, with a strong heroic feeling of “I’m just barely holding it together and I can fall apart later.” Zond-7 has warmed up my leg with his hands and has soothed me and made me laugh about many things and run me a hot bath and gone to get a heating pad and told me I do not have to magically bounce back in 1 hour as I keep expecting myself to do, but instead should melt down for the evening.

***

It’s so helpful to complain in detail! Remember that when you hear old people talking about their operations. It restores some measure of dignity back to the soul.

I have some amazing entertainment for the evening thanks to Zond-7 and his crew, my spirits are back up, I feel more human, I’m warm and thus in less pain, and there is a new electric blanket! And a sort of leg patch thing, a giant “air activated” heating pad you crack open, that lasts 8 hours. It has the kind of adhesive that electrodes have – sticky but that doesn’t hurt to peel off of skin. I like the 8-hour heating pad on the outside of my leg!

The sural nerve was unfun. The tibial nerve was much much worse. “Peroneal” was bandied about during some bad moments. We did not get up much beyond my knee, so I don’t know what’s next.

***
Update even later: I am still hurting, but walking a bit again. I see that truly people don’t expect the nerve conduction electric shock tests to be painful. But, they were painful, very much so, for me. I put them at 8-9.5 on the Mankoski scale. It was 9+ for about the last half hour. I was incoherent, shaking, nauseous, unable to stop crying from the pain which I most definitely did not experience as being “like static electricity”. I wonder if they believed me that it hurt. Also, I see that there might not be any diagnostic value to the tests. Instead, they want to complete the tests to contribute my nerve conduction, etc. results to the range of known ranges.

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How disgusting, what a bunch of fakers, liars, cheats in this sorry-assed excuse for a branch of legitimate government. FEMA is all about spitting in the face of anything that even smells like truth or honesty or transparency.
FEMA calls a “press conference” 15 minutes before the time, and puts its own staff in as the “reporters asking questions”, and the actual reporters were allowed only to listen in with out speaking, dialing an 800 number.

FEMA gave real reporters only 15 minutes notice about Tuesday’s news conference . But because there was so little advance notice, the agency made available an 800 number so reporters could call in. And many did, although it was a listen-only arrangement.

FEMA were the most spectacularly incompetent ass-covering liars I had the pleasure of dealing with in Katrina relief work. They changed their story every 5 minutes. No one could ever claim responsibility; they were deeply messed up as an organization. Nothing got done. Incompetence and screw-ups were hidden as quickly under as many layers of lies as they possibly could fabricate.

I’m surprised that even the other bits of the Bush government managed to call them on it. You know that is low, when Bush’s press secretary finds it low.

What dumbasses, I am sorry but this just disgusts me to the extreme that they would fake a conversation and fake being questioned by independent agents. They are free to give one-sided press releases as they please. They are also free to answer “no comment” to questions from actual reporters. But they deliberately tried to give the appearance of openness and free press access. For fuck’s sake. As if most of the media isn’t in the administration’s pocket anyway… like they don’t throw soft enough softballs already??

Mood: mad as hell

Oh, and I still have a bad head cold. But I am eating real food again and don’t feel nauseous. And I am walking really well the last couple of days! All the bed rest helped.

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I was sick in bed again all day. I managed to do a load of laundry, drank ginger ale, and finally in the evening had some rice and soup. Oh my god! Soup! It’s so delicious! Thank you, Squid!

I’m so hungry, and still sort of feverish and dizzy. But I can only eat a tiny bit at a time. Meanwhile, from bed, I got my inbox down to 0 today. I read and answered nearly everything. There’s sort of an extra inbox of more emails to answer and think about or things that I should blog about or read with extra attention.

I read some Mr. Moto novels and a book about Ghenghis Khan and finished the one about the !Kung woman named Nisa that was like 90% Nisa talking about her lovers and sex and jealousy, which was interesting. A chapter at the end tried to explain that it wasn’t the anthropologist’s prurient interests or line of questioning, or that she picked an unusual person to interview, but that !Kung women liked to sit around with each other all talking about their lovers and joking about sex. It sounds plausible.

The thing that really pissed me off was Nisa wistfully thinking that maybe someday the book would be published and would earn money so she could have a cow. For fuck’s sake the anthropologist was at Harvard. Probably her pocket change could have bought her a cow. I feel like going to donate to heifer.org right now… dammit…

In between all that, I dozed off at short intervals. The aching and fever was much better. What a relief!

When I get up I’m very dizzy and feel dehydrated. But I can’t drink fast enough to deal with it. The tiny bowl of soup is just sitting in my stomach, waiting ominously… So I keep getting up a little bit here and there on the theory it might help my digestion to start going again.

It is also not just the barfology over here. I also seem to have a regular cold. Or it’s all one big nasty illness. Whatever it is, my head is stuffed up, one ear can’t hear, and my lungs aren’t happy. So I will try to do some actual work tomorrow, but will stay in bed to do it.

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I am missing the 2nd day of the fabulous geek conference because I got quite sick. I woke up feeling awful and it just got worse till I was barfing all over. My lips are all cracked, and I’m too weak and feverish to walk around the house much, though I managed not to camp out on the bathroom floor. It’s so scary how sick you can get, so quickly! I think of all the books I’ve read where the soldiers or travelers get dysentery and have to be tied onto their horses.

In the last few hours I have managed to drink half a ginger ale, so that’s hopeful.

Zond-7 had to leave early for the airport, Rook had to go in to work, Jo Spanglemonkey brought me the ginger ale and crackers. I’m half relieved to have Rook back home but also half annoyed in the feverish state of all sounds seeming twice as loud as usual. My body aches all over like I’ve been beaten up, and worse in my low back and gut from the cramps. And I’m VERY WHINY.

Mostly I slept, stared at the ceiling, laid on a heating pad, sobbed on the cats, and then in the afternoon read about halfway through the Xenogenesis trilogy. I tried to read an S.P. Somotow book but could not engage with it.

I’m so grateful that Rook is bringing me a hot drink and some Tylenol and is doing the laundry I couldn’t manage and is bleaching everything in the bathroom. What a day! I can’t help fretting about work. But it’s unrealistic to think I’ll be working tomorrow.

Okay, let’s be bold with this cup of broth, and hope I don’t barf it all up and the tylenol too.

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Today I felt an overwhelming gladness that I could do so much and that life was so full. I woke up curled up with Moomin and Zond-7, had coffee while I finished reading Tooth and Claw – which was excellent and you should read it if you love victorian novels (or regency romances) and dragons or even if you don’t – And then did some cleaning up (not so much after Zond-7 as after me since I’d been around a lot and I am a huge slob with the laundry and dirty kleenexes, qtips and towels and dishes and coffee cups and books and earplugs strewn everywhere next to the bed, along with the entire contents of my backpack). We drove off to leave Zond-7 at his bike and to go off for errands while Moomin and I went to Dog-Eared Books (I bought Moomin a TinTin, an Asterix, and one of those books about a dog and a cat who journey for 1000 miles, and myself a used biography of Mary Wollstonecraft) then all met for smoothies and coffee at Sidewalk Juice. Back in Deadwood, I puttered, bustled, did laundry, unpacked, washed dishes, strewed more things from my backpack around so that I’d feel at home, like a rat, and nibbled some crackers.

Rook and I and Moomin took off to Squid’s house, where I was for the first time able to get around walking well enough to tour the whole house. If I had my druthers I would be better enough to go on bikes and trampolines and seesaws and sit on the floor to play. Still, I could get up and down as I pleased and go up the steps without barely thinking of it – just limping a little instead of painfully hauling myself along. And I could watch the kids playing. I do still tend to space out, now that I’m out of the habit of playing with the kids because I physically can’t or have been in too much pain to deal with them. Then, M. called to talk about her pregnancy which I find unbearably exciting because which ever of them got pregnant I knew that M.’s reaction would be awesome, quirky, neurotic, human, and that it would push all her buttons to do the thing I most love about her which is her intense scrutiny and logical analysis. Also, she said I was right that if it happened she would get a strange pleasure in feeling like a scientific experiment observed from the inside, and she doubted it, and I was right, which if you have ever had an ex-girlfriend, you will know is satisfying. Plus, can I just say that one of my best friends in the universe plus M who is basically my ex wife, having a kid! Most exciting thing ever, besides my sister having a kid and joining the secret cabal. I cannot wait to spoil it occasionally and buy it very strange little onesies.

Squid fed us cheese and pomegranates and chocolate chip cookies — sending me home with an extra pomegranate from someone’s ranch because I devoured the first one without stopping – not remembering it is pomegranate season and I particularly love them because of the way you have to dissect them and work hard to get the marvellous bursts of flavor. It is the pleasure of the satisfying ticky little work of untangling a ball of yarn, combined with eating secret treasure. I was happy she likes the shirt with the pacific tree octopus. But if she was being polite and really doesn’t, she should treat me like family, and just wear it once pointedly around me and then put it away for a good respectable year or two in her garage and then donate it to charity, the way we all seem to deal with such situations around here in suburbanlandia. But actually, I believed her story that she had a bad week and then was hung over and woke up to Seymour displaying it like a snarky birthday banner.

Rook and I made a grocery list that shall live in infamy in which incident I realized how deeply we misunderstand each other over small things, like whether one is having a productive discussion or a maddening argument. It ended well, and I went off to grocery shop in my maddening way to my heart’s content, only showing a bit of prudence with the produce so that it wouldn’t rot in the fridge. I drove the 2 blocks to the Hole Fuds and then walked through – added bonus that I helped a very old lady hang up her handicapped parking thing in her car; she had dropped it on the floor and couldn’t manage to bend over to pick it up, or did not want to deal with the difficulty, which I completely understand. She told me it was one of her bad days and I showed off that it was a good day for me and we had some crippled lady bonding conversation about sciatic nerves. So, I walked through the entire store, and then bagged my groceries, feeling very muscular about the triceps, as if I was going to accidentally haul up a gallon of juice and it would fly up to the ceiling because I forgot I was raised on Jupiter and have super strength. At home, I made oatmeal bread and ate pasta and spinach salad.

I thought about what M. said in our phone call. Her hard question to me was “You used to really want to have a bunch of kids. But then you only had one and you seem happy with that. What about being a mother did you find too hard, or different that you thought, or what parts did you find that you don’t like?” It was something like that, but more blunt and angular, maybe beginning with “How come you don’t actually like being a mother?” She starts with the most uncomfortable, squirmiest framing possible. I recall fondly how she would confront my male ex-lovers, prospects, or friends with opening salvos like “How can you even stand to be a guy in this patriarchal society? How can you not want to just to kill yourself? I don’t understand how you can live with yourself.” With a sharklike grin. It was teh awesome. The thing was she was just curious and wanted to know. It came off as scary, yet sincere. So with the way she asked her question today, I learned something just from my initial reaction to the framing of the question, which if it had been phrased more mildly or diplomatically, would have not led to any new information. I don’t have to start out explaining all the ways I of course DO LOVE being a parent, or a mother. She knows them well, or can extrapolate them. That’s not the question! What bits don’t I like? How did I move from wanting many children or at least more than one, to wanting one? Mainly, realizing how much labor and thought it takes. Also, I found I’m not as good at it as I thought I’d be. It’s not that I’m bad, it’s just that I can’t live up to my ideals; as if I could be my mom and dad at their best moments, but all the time. I am too ambitious to have that much to give. There is also the factor of having two miscarriages that were physically and emotionally difficult. I couldn’t deal with more risk and grief. But it is more about energy and maybe ambition or self protectiveness, which you can see as positive or negative qualities. I am very happy to give over a chunk of my life to being a parent. But, with another baby, with all the strain of infancy and no sleep, I would be less good at parenting than I am now, and would not take well to the demands of life, and the amount of unselfishness I’d have to have.

After Squid’s house, we came home for a bit. I assessed our Halloween costume potentials, and called my mom and dad, and made lists and diagrams of how I would make a bat utility belt and utilities from duct tape, and realized I had not done any work or written my column or blogged anything for days or prepared for the conference and that I have a meeting tomorrow at 9am and a doctor’s appointment and then the conference again, and work, and my parents are coming later in the week, and that I had mixed up many things about my upcoming schedule. Then we went off to Haus of Humour, the local amazing costume shop, and found the perfect Batm4n costume for Moomin. So that is somewhat less work, though I regret the utility belt (which would have been 3 errands and hours of work.) I got a ridiculous wig which faintly recalls the great wig I had years ago that I called my “tumbling chestnut locks” which was horribly realistic and yet so wrong. This one is for my Oracle costume (the superheroine not the database software.) It’s longer than Barbara Gordon’s hair should be and yet I liked having long pretty pony hair, even hair that is utterly wrong and silly and porntastic.

Back to my oatmeal bread, which came out very well! It is from a bread machine so don’t be too impressed with my mad baking skills.

I have left many things out, like visiting hazelbroom, and going to the park with yatima, and some peculiar physical reactions and things I said which were sort of metaphory yet true, and some minor dramas of life which are embarrassing but which I continue to mull over.

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My work peeps, let me show you them! They’re all here from out of town – or most of them were – and it was really really fun. There was mild debauchery – we all crammed into the same bed in an enormous cuddly heap – there was no room to blog, seriously – there was a lot of whiskey – but all reasonably virtuous if flirty – no pole dancing like our last meeting, but it was all just as bad – A bunch of us hot tubbed tonight – and it is easy to face the company meeting with them around. Also, I saw some kind of funny code but I won’t say any more about that because it’s too mean to blog it. But it was hilarious and awful.

There was a great moment where we were all on the bed and the other guys were on the floor installing bugzilla and cussing (all in about 5 different screens in the same screen session; I watched for a while but could not keep up, though it was fascinating to see the speed of their floundering. It was the same floundering I would do, but much much faster.) So during this moment the door was open and a white haired guy in a suit was going into the room across the hall, and Bill O. politely bowed, stepped back to hold open the door, and gestured while saying “You might as well just come in here.” The look on his face!

I think we teased Ingy too much in the hot tub and made him mad. We didn’t mean it! I seriously love it when he talks about yaml. It makes me get all flushed. We were just giggling in a girly bonding sort of way. We were not laughing at yaml! NEVER!

I went to the spine clinic today and it was mildly discouraging. I am to go see neurologists. If I get any “ocular symptoms” then alert my doctor immediately (that means, watch for MS… thanks doctors…). I came out feeling wrung out emotionally & again with the physical “does THIS hurt” “YES IT DOES OW OW FUCK OW OW OW” doctor visits from multiple doctors as it is a teaching hospital. It hurts more afterwards, and I had this lingering guilt and feeling it was all my fault and I should work harder, so I walked to lunch 2 blocks or so and back, which then hurt like fuck all the rest of the afternoon. But again, my awesome work homies propped me up and also Zond-7 was very comforting on the phone. And the hot tub fixed me up pretty well along with some wine. Rook massaged my painful haunch.

I’m going to get up early to take Moomin to choir practice! And maybe will sign him up for fencing lessons; he seemed to like the idea.

I saw an extremely nifty thing today, a wikipedia tool:

http://wikidashboard.parc.com/

Which exposes activity on Wikipedia articles over time with the identities of the most active users on a particular page (including discussion pages) and then a different analysis on user pages to show activity patterns. AMAZING AND COOL.

And another more mildly nifty thing:

http://freerice.com

Which is a vocabulary quiz that claims to donate small amounts of money for every question you get right. For every 3-4 you answer correctly, you go up a level. If you miss one, you go down a level. At level 50, even if you answer them all correctly, after 3 or 4 you go back down to 49 and then go up again if you keep getting them right, which I know because I did it. It was gratifying to my vanity to know that I got higher on it than my friend tmtm at work. Also, it was nice to know I still have all that wordy knowledge rattling round in my head despite age and ossification. Unfortunately it is a skill that has never been of any value to me, and when I’m talking I mostly say vague things like “thingy” and “stuff”. Often with unusual words I can remember exactly where I learned them or encountered them, like Treasure Island or fairy tales or articles on intestinal parasites I read years ago.

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I dreamed I lived in an enormous city, a very old city, and had a little motorbike. The drivers in the city could turn on a dime; no one followed traffic rules. There was a war. I lived in a tiny room crowded with people including Moomin and my friend Debbie. At one point I barely escaped an avalanche – on my motorbike. Another, I was with some people of my neighborhood when we discovered that one of the storm sewers opened up into an underground palace. Me and another guy crawled through the shallow water – it had not rained in years – to see the caves open up into a blaze of light and marble. It seemed inhuman. In that line of shops and little houses there were four or five openings into the archeological site. We came up to the street to the gathered crowds, raving, explaining what we’d seen. People were afraid to go in, but the news spread out into the city.

As I went to a little shop nearby I got word that my superiors were going to destroy it to preserve it for future generations. I was a time traveller and not in my time. They would send a British bomber jet to those coordinates, drop some bombs to seal the entrance, because this world’s time’s archeology wasn’t advanced enough to properly excavate the site.

I had to get my family out, but I also warned the other people in the shops and houses above the other entrances, though I couldn’t explain how I knew what was going to happen. This blew my cover and made it clear I was a spy. No one accused me, because they respected that I was saving their lives, but there was a general drawing-away that made me sad. One of the family houses had a family who were cruel to a girl on crutches, the girl I wanted to marry, and I knew if I warned them, they’d leave her prisoner to die. So instead I made some excuse, trying to get her out of there, and left her abusive family to the bombs.

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So, the area we’re in is a bit south of Dongcheng District, to the east of the Forbidden City, right off Wangfujing street. I can’t remember if I’ve said this already but Wangfujing, at least right now, is set up to be a tourist destination for people from elsewhere in China. So most of its stuff-for-tourists to buy is Swiss watches, and Legos, and Disney logo things, and Adidas and Nike, basically a lot of brand name mall stuff. Also… meat on a stick. I am laughing at myself a bit because I wanted presents for people back home but I don’t have anything.

Today, we ended up kind of sitting on a street corner in a very random place out near a dumpling restaurant that had rave reviews for its soup dumplings. People were hanging out on the street as they were in the hutong off of Jin Bao, but things did not seem so oddly… polished and swept. There was litter, people were walking dogs, I can’t explain, but it felt more lived in and normal. So I reassessed my first impression of working class life in Beijing, and am now figuring that the neighborhood I saw at first *was* “special for olympics” i.e. had been kind of cleaned up and renovated. Anyway, we hung out next to a canal or river, sitting on the curb, bought some popcorn coated with chocolate powder from a street vendor (5 yuan), went to the convenience store for cookies and soda, and I got some guys at a bike and motorcycle fixing stand to let me pump up my tires, for half a yuan. We figured out afterwards that they were astonished and disapproving that Zond-7 just sat there while I crossed the street and did the tire pumping. They were quite normal and friendly to me and I just kind of liked them and their whole roadside bike-fixing stand. I pictured the new monumental sculpture that would include the guy with the welding thingie, and the popcorn-making girl with her machine that fit on her bike trailer, and a lady in a flowered sweater walking a pug dog.

The dumplings were awesome… I had a really strangely nice time sitting on the corner watching the kids get out of school, with their blue track suits…

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This morning I woke up to singing outside the window, and looked down from the 11th floor to see the cooks (in tall white chef hats) and wait staff (in red and gold uniforms) of the East Family restaurant lined up outside. A man in a black suit stood in front; we called him Mr. East. After their song, all the cooks and most of the waiters went inside. The waiters left outside were all girls, in a ragged line; Mr. East was inspecting them and giving orders and motions. I spoke for him since we were too far away to hear… Dress up that line! Number 4, your uniform is dusty! No shirking! Come up in front! Close ranks! When Mr. East went inside there was a lot of fidgeting, twisting, straightening of hair, shoving each other and clearly giggling. Then a song came on that I know from Dance Dance Revolution, one with the line “ay, ay ay, my little butterfly” — it might be the band “Papaya” — and the waitresses did a hip hop dance routine on the sidewalk as Mr. East stalked about slowly behind them next to the storefront, with his hands behind his back.

Afterwards Mr. East disappeared, and the girls filed around to the back of the restaurant pushing each other and half falling over with laughter.

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We got in a taxi, opened the laptop and pointed at an address in Chinese, with a photo of the restaurant, knowing only that it was somewhere out near the 3rd ring road to the north. The taxi driver was confused for a bit, then took off. It seemed very far away, and then further, and it was almost 10pm on Sunday night and the restaurant closed at 11, and we hadn’t called to make sure. Down a very industrial rubble-ish street right on the frontage road to the 3rd ring road the taxi driver went down a narrow alley, which dead ended. He asked another taxi driver for directions. We couldn’t understand! He pointed into the giant block of construction in progress, and let us off. At a little hotel nearby a guy came out and helped us, after much discussion in Chinese and pointing at the web page on the laptop, leading us back down the alley, through another alley full of ridges made of rebar and metal plates and enormous speed bumps to which I learned the word for “watch out!” as there were no streetlights or anything. (Zond-7 pushed my wheelchair, because my neck was hurting from idiotically playing too much nethack on the plane.) A complete maze, through concrete blocks and deserted-seeming apartments and the big walls blocking off construction and demolition. Finally we came to a corrugated iron wall cracked open slightly, held shut by a chain. Through the crack and down across a demolished building in the shadows we could see a cool pink glowing sign in a very fancy font “Pure Lotus”. For a minute I considered folding up my chair and squeezing through the crack in the wall. Our friend from the nearby hotel gestured and sighed and repeated something that must have been “Well, hell, there it is, but…!” He led us out again past the apartment block, past the defunct expensive furniture store, past the other demolitions and some parked cars behind more tiny apartment balconies with laundry hanging out, past a hole in the wall butcher shop and corner store and down the rebar-corrugated steep-sloped entrance to the alley, out to the side street, then out to the main street. He motioned for us to give it a good try from the other side of the block, around the corner, and we waved goodbye.

Zond-7 and I match very well in our love of randomness and getting lost, of being slightly unnerved but liking it that way and keeping good spirits up, and not minding if the goal does not happen or things don’t work out – we are good travel companions that way.

The sidewalk was multi-levelled and cracked, so we went in the street in the bike lane. At a break in the big construction-hiding walls (plastered with ads and Olympics posters) we dove into a dirt alley bordering on a partly demolished office tower. I wheeled over glinting mirror glass and gravel. Guys in hard hats and jumpsuits gawked at us – wondering what the hell was going on – it was after 10pm – where could we possibly be going and why – Finally, the other street. We had just cut a corner but had not really penetrated into the interior of the block. About halfway down the block there was an opening with cement trucks and what looked like an auto body shop and — once we ducked through it – A SIGN for the restaurant. A couple of twists and turns and more signs – we joked we would keep following them as they receded into the distance – we saw the empty field and the corrugated padlocked wall that we had seen from the other side of the block – and the street kept twisting and getting darker, dead-end-like. The dead end opened into a paradise of little water garden and wooden deck, carvings, an enormous door 15 feet high made of logs pivoting in the middle to swing open without a sound, and lotus holograms projected on the floor, blossoming, next to an enormous yet delicate wooden model of a buddhist temple. Interior decorator monks had waved their magic wands to create perfect spot lighting and draped fabric and rock niches with candles and brocaded seats like little thrones, more water gardens and flowers, all an impression of peaceful cool light and openness. Incredibly sexy waiters with matching monk uniforms – sort of thin slightly tattered open shirts and loose pants for the guys and elegant pale pink fluttery things for the women – Well, monks can have aesthetics too – And can be obviously young hipsters with awesome haircuts – as they gracefully hand over giant menus that are pieces of art themselves with strange-ass names like The Peace Settles and Purifies or Love Without Reason which turn out to be carrot-pineapple juice or soup with gingko nuts and lotus seed and wild yam and several kinds of odd and delicious fungus, with soup dumplings. A monk, or nun, or hipster in pink ruffled nun suit, laid out enormous leaves as placemats, with carved sticks and spoons made of giant cowrie, flower petal shaped plates, basically everything was leafy and made of wood or shell or sometimes tinfoil made to be artistically leafy. The straw to my carrot-pineapple juice was bent into a rather lovely pattern winding around yet another leaf slotted and stuck on the edge of the tall thin porcelain cup. I kept sort of jaw-dropping and becoming more and more hyperaware as I’d realize things like, the person laying out our plates was doing it carefully with one hand while doing a buddhist mudra with the other.

The soup with different kinds of gourd and squash and fungus was one of the most delicious thing I’ve ever eaten, and had a smokey flavor that sent me into a Proustian tailspin of trying to remember what smell or childhood taste it evoked. Nothing I could name, but it was a little like the smell of the ocean combined with wood smoke.

After we came in the enormous 15 foot high wooden door made of logs slowly pivoted shut. We were the last people into the restaurant.

Everything was so beautiful – I’m really not exaggerating – you are totally dead-souled if you eat here and don’t have a blinding epiphany. Mine was that, earlier in the day, I was having a strong feeling of impatience, railing against my problems with mobility and walking and pain, going so far as to say bitterly that I wished I could walk better and I was sick of it all, and it isn’t fair, and it used to be so easy; it was a place of strong self loathing and wanting to curl up and hide and cry. This doesn’t happen to me all that often, but it did happen yesterday; it was partly exhaustion and jet lag as well as hunger to be able to do and see more and have it all be less inconvenient, less conspicuous, less fussy and above all not painful. BUT in Pure Lotus I considered all that as I nibbled chewy vegetarian fish in spicy sauce and Zond-7 and I sappily gazed at each other as he gave me half of the last of his most perfect transparent dumplings stuffed with mushroom from his chopsticks, and of course, the obvious epiphany to have (and the one I usually try to live inside) is that everyone carries around problems and obstacles, and pain, and I’m lucky to know what mine is and to have so much awareness and enjoyment of life (and to have such an amazing nice life.) On top of that, if I can fly halfway around the world and go to a city where I don’t speak the language and can’t read anything or talk to anyone, and despite not walking very well and having a wheely exoskeleton, can still make it through broken glass and concrete rubble and smog and darkness to this odd delicious aesthetic loving nirvana which we will think of as nirvana although it is only for rich people who can afford a 50 dollar dinner, then, there is nothing to complain about in life and things are just fine.

Two of Pure Lotus’s staff got us a taxi and then came with us out the winding alley to help us in and to help us communicate with the taxi driver who was not quite sure where our hotel was. They helped stuff the wheelchair into the trunk and were so amazingly patient with our ignorance of language and everything. We so didn’t deserve such consideration. Also, I was grateful for the moments when taxi drivers, hotel staff, and our hipster monks and nuns giggled with us at the ludicrousness of the situations and language barrier and perhaps at our nerve for being in those situations.

I have a soft spot for very beautiful places carefully constructed and hidden in industrial settings (like my favorite cafe in my hometown).

Aside from that I am astonished that looking online for reviews of this place, it’s all just “best vegetarian food in Beijing” and nothing about the total amazingness of the experience.

We almost had heart attacks when after we thought we were finished (but we weren’t sure because we had no idea what the heck we ordered) they brought out what looked like an enormous hand-polished tree stump with smoke pouring out. MY GOD is it another course of food? No- it was dry ice bubbling from a tiny pool of water in the wooden bowl with a tiny stand made of the same wood inside, with tinfoil leaf (nature + artifice perfect combination) and real leaves (pandanus?) with small mandarin oranges, ripe and sweet. I was in awe.

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