My Time as a Human

if you feel confused too, follow me to the beginning of this story

I’ve already said it a thousand times and I don’t think I’d feel bad saying it a thousand more. Every time I walk these streets, and even more profoundly true now that I sometimes need basic help to get around, Taiwanese people are the kindest humans on the earth. I swear today an older man lied to me about being on his way to a bank just to walk me there. We chatted (in Chinese, thank you!) all the way there and as soon as we arrived he dashed off in another direction.

To continue the superlatives, I am the most insane human on earth. Can I not chill out? I of course took it as a personal challenge to make it by myself all the way to another distant bank and back to the hospital. I had to stop here and there to, well, concentrate for a moment to get my bearings. But I made it. And it was a beautiful day. And, honestly, I think the walking helped. Especially after what the doctor said. Oh yes, that.

Well, the Neurologist and five of his furrow-browed students had fun playing the “Kai puzzle” today. He loved my two pages of cartoons explaining my case history. Me sleeping on a bus. Me looking dazed. Me getting poked in the butt with needles. He had the nurse photocopy them for his collection. He asked me if I was an even better illustrator when my brain worked.

The doc ran me through my paces, having me demonstrate slow halting speech and hand tremors, looking up each time to say, “eh? eh?” to the students. He then pulled one of my favorite tricks. He held up my left hand and told me to clench and unclench it each time he counted. “Yi!” I told my hand to close. It thought about it. It closed. “Er!” The hand slowly opened. “Yi! Er! Yi!” It got a little faster, but always lagged a second behind. I focused all of my attention on my left hand. “Kuai yi dian!” (faster). I grimaced and focused all the harder. At last he let me stop. He told me to move them as fast as I could. He then explained that it was a test of rigidity… in my other hand. The tricky devil had been yanking my right hand around in all directions and wanted me distracted so I wouldn’t affect his test. It worked… far too well. Bonus point: doc.

Eventually he summed all of his poking, playing and questions. He decided that there was a good chance I was right about the carbon monoxide poisoning. A big dose, and I would be dead. But a medium dose… would produce this. Basically, Parkinson’s like symptoms with the additional difficulty concentrating. For the fun of the class he then had me stand up and try to walk. He immediately took my arms, which I hadn’t realized were raised, and yanked them down. “See? The classic Parkinson’s stance.” He imitated it and, to my chagrin, I was going right into it. Hunched slightly, forearms up. I stood up straight and let my arms fall. There was no way I was going to let that happen again. I paced around for the students, faster a bit, and we called it a day.

He set me up with an MRI of my basal ganglia. The thinking is that if this confirms his suspicions, we can begin drug treatment. Rapid success with the drugs should further confirm the diagnosis. The downside? He left me with just enough time to get into trouble. This is no China, where I could walk down the hall, get an MRI, and walk back in less than 45 minutes. My MRI is on Saturday and the next appointment on Monday. This set me up for a classic Kai move.

I worked my way back towards the hostel where I’m staying. It’s only two subway stops away, but I needed a little help finding the station. Honestly, I would have needed the same on any normal day. I came out the other end continuing my new walking technique. Do a few kung fu punches and shoulder rolls, loosen up, stand up straight, walk normally. After a few minutes, check my stance. If I was starting to hunch or my arms came up I repeated the shake up and went back to normal. I swear this actually seemed to clear my head a bit. At least, that’s probably why I noticed the huge sign.

On one side, there were two circle people holding hands. One circle person was white, the other black. As my eyes rolled along the sign my heart began to pound in a familiar, normal way. Children’s Go University. I forgot about food, about walking normally, and, well, anything but the giant grin on my face. I leapt through several of the wrong doors before beaming out onto the second floor. It was glorious. A huge space with classrooms full of excited children learning Go. I burbled in random Chinese at the women at the desk who tried to explain that they only taught children. (In Taiwan they call children, 小朋友 (little friends). I thought this was just an adorable address but, in fact, they say this instead of 孩子。)

At last we worked out that they would have a women give me a call. I made it downstairs to have my first ever squid in squid ink pasta when she gave me a ring. Afterwards I wasn’t sure, but I thought perhaps I had agreed to watch a go class. Or take one. Or something. I was pretty sure it was at 7:45pm and made a point to be early.

Do you remember when you believed that if you could just stretch your body long enough, longer than you ever had before, until you almost reached the ceiling, the teacher would call on you? The little girl in front of me almost popped her arm out of her shoulder shouting, “wo zhi dao! Wo zhi dao!” (I know! I know!) She and three boys were all about to explode with certainty that they could solve the Go problem the bouncing teacher was popping up onto the big board with huge magnetic Go pieces. She teased them and toyed with them, playing them like a harpsichord. It was so beautiful to watch. When each child went up and made a wrong guess she would grin and shout, “Hao. Zai jian.” (OK. Good bye.) This was the “nope” that sent the child “oohing” and waving their arms back to their seat. She kept them riveted with her explanations, she drew in the slower children, she dangled the troublemaker like a ball on a string. The energy level was amazing. At the end I wanted to applaud. But it was my turn.

I didn’t tell her about my brain. I wanted to see what I could do and I paid for it. I used every muscle to keep thinking as I tried to understand her Chinese and her explanations of Go. Fortunately, she only dropped her persona ever so slightly for me. When she wanted to show me how bad a move was, she made huge crying sounds and rubbed her eyes. I laughed and told her to keep treating me like a big kid, I needed it. She was fantastic. I actually managed to learn several new josekis, some great closing strategy, and a new way of counting. I left with a borrowed game board, a huge book of professional games to play out, a promise to return tomorrow to pick up a list of go terms and a problem book, and a vague sense that I was forgetting something. Something about…

resting. I’ll never learn.

I spent all day running around a hospital, ranting nonstop with Gunter, strategizing with my parents and sister, exploring the meaning of life with Nikita, trying to walk, struggling to learn Go and understand Chinese… my brain hurts. And yet, dear reader, I knew that I must power through a last effort to get you this update. I built up to it by playing guitar, something that terrified me (I didn’t know if I’d be able to do it) but it went… incredibly well. It really gave me hope. There were plenty of challenges today but I really do feel like I was better off than yesterday and being able to move my fingers fast enough to play guitar was a huge relief.

Love to all. I’ll keep these updates coming. My apologies for not having the energy to edit them, or keep them short!

photos link to photographer’s sites unless they’re mine

if you feel confused too, follow me to the beginning of this story

Every human, if they aren’t German or a nervous midwestern boy like I used to be, understands the power of human touch. Sometimes that’s a hug, or a squeeze to the shoulder. Sometimes it’s more complicated. There was a fantastic TED talk by a doctor who is convinced that the basic physical exam, thumping the chest, using a stethoscope, is not an obsolete set of tools but a fundamental human ritual that establishes trust and care. Underlying it all is something simple and primal: physical contact with a human being. I was very lucky. I experienced extra doses of all of these today when I needed it most.

The ride to the Taipei hospital was surreal. I had been convinced that I would be able to walk to the subway, but when it was time to go I couldn’t even figure out how to open the door. I would never have made it to the hospital without Nikita Chen. I couldn’t concentrate. She realized what was happening and insisted on taking me over on her scooter.

It was raining. She made me wear a helmet. I climbed on and with a quiet purrrat the scooter motor threw us out onto the wet streets. It was dreamlike. A strange and wonderful world drifted past us as I sat in one place. Being in contact with another human being, holding on to keep from being tossed onto the street, was transformative. I was lost. Confused. But I felt safe as the rainy streets slipped by beneath the scooter tires, my body bounced by bumps and rocks along the way, hanging on to a physical warm assurance that it would all be ok.

After helping me fumble through the hospital Nikita left me with a doctor. He talked to me, incredibly, in Chinese I could almost understand. We used Chinese for about half of our meeting at first and then switched to a mixture of English and Chinese. He was very patient, showed real concern, and then began a ritual that radically elevated the experience and separated this visit from all of my visits to the best Chinese hospital we visited. He took my arm. He did a blood pressure check by hand, with a stethoscope. He used the stethoscope to examine my chest. He used his hands to check muscle strength and response. He looked into my eyes and checked my tongue. I have no idea what, if anything he learned. But I felt so reassured that I finally relaxed, for the first time, and could imagine that maybe there would be a solution. Maybe I could be helped. I could let someone else take over for a moment and do what they do best.

Thank you Nikita. Thank you Gunter, who is helping me back to the hospital tomorrow morning. Thank you family practice doctor, who’s name looked so familiar to me until I realized that it was “回答”，which means, “answer”, and was in fact the place on the note that he wrote for the other doctor to reply.

At this point, I don’t know what’s causing the problem. I feel like I’m constantly dizzy, not spinning, but like I’m about to fall asleep. I think very slowly. It’s worst in the morning for some reason. Classically, I seem to gain a little speed if someone gets me into a conversation. Very Kai. I do, however, have to pause for my brain to catch up even during those. It’s like my mouth is the powerboat in the distance and I’m behind on water skies, sometimes watching the boat continue as the line goes slack and then having it snap into tension again, yanking me back into motion.

About two weeks ago I went to Hong Kong to visit Steve March and Donna Chang. We had a fantastic time just being together, Hong Kong being the giant shopping mall that it is. We did find a really nice spot to sit in a little garden one night during one of our philosophical rants and had Chinese squirrels throw little nuts at us. More on that later, along with stories about monks bending steel rods with their necks and a beautiful young dancer who showed me the heart of the city.

kissing Michelle Yeoh

I took an overnight bus back to Fuzhou. The bus terminal was thick with exhaust, but faced the outdoors. I eventually stood out on the street to avoid it, but this is what gave me the idea to look into carbon monoxide poisoning later. I rode 12 hours, sleeping a little roughly, bouncing along in my tiny bunk-cot. These cots are sized just below the length and width of a small Chinese person and so it takes a bit of folding and twisting to tuck in an American. I actually love these busses because they’re, well, hilarious. And dirt cheap. I was riding with business people and young travelers alike, all in their socks and checking their cell phones one last time before before pulling up the tiny blankets.

I woke up as we rattled into the bus station in Fuzhou. I was groggy, but I’m always groggy when I wake up. I also had a bit of a headache, but I decided it was because of the lack of good sleep and went to class. The headache became… intense. It filled my whole head, mostly across the top, and made it very difficult to think. Understanding Chinese was even worse than usual. I went back to my room and slept. The headache lasted for two days. Everything felt fuzzy. Pains started in my lower right front of my body and in my lower back, and seemed to migrate around as though moving with my blood. I never threw up or fell over. Eventually the headache and pains dissipated and vanished.

From then until now I am constantly dizzy. It’s hard to concentrate. The severity comes and goes, but it’s always there. At certain times, over the last few days, I can’t even fill out online forms. I mean, online forms for cripes sake. I’ve been creating those things for eons! In the end, when I finally admitted that things were serious, Gabriela Jovanny was kind enough to help me figure out how to select a credit card from a drop down list so that I could buy a flight to Taipei.

The realization that it was time to get serious came over several trips to Chinese hospitals, thanks to help from Angela Zhang Meng and Sisca Limento. When we finally found our way around an insane maze, including going around back to find stairs to get up to the emergency area, we pushed through the clouds of cigarette smoke past the broken open-hole toilets to a doctor who then sent me from one test to the next. A competent doctor scanned my brain. Far less competent 12 year old nurses checked my heart by attaching giant clips to my toes and fingers, rubber clips covered with what looked like hello-kitty stickers. I watched as three such nurses tried to put a gurney in place. The gurney was a little rusty and one of the legs was broken, although they couldn’t seem to figure this out as they fussed and argued about how to put it into place. They couldn’t get the wheels lined up, nor figure out how wheels worked, and so I stood there in a fuzzy daze, giggling my fool head off at the circus. Someone threw them a cover and they spent several minutes trying to put the tiny elastic bedsheet over the little mattress. Yeah, sure, even I have trouble late at night, exhausted, trying to put a new topsheet onto my bed. Some corner always ends up folded over in the wrong direction… But it was noon.

Honestly, the doctor herself didn’t seem terrible, just overworked and distracted. She mostly kept sending me from place to place and refusing to listen to my demands for blood checks or oxygen.

In my second trip I eventually had one of the 12 year olds try to give me an IV. She told me to clench my fist. That part wasn’t hard, thanks to my psychotic paranoia about needles. Punch me in the face. Beat me with metal rods. No problem. But a tiny needle or a sliver?! She stabbed my hand repeatedly trying to find a vein. Anyone who’s seen my veins knows this is ridiculous. My veins are as big as my muscles. She then blamed me for me for not being relaxed enough. She finally got it working by the second hand; a good thing because I only have two. We got the blood flowing out and then the glucose flowing in. It was then that I discovered that the process was going to take four hours. Four hours?! I had already wasted enough of Angela’s time. I’d also been stabbed in the butt with a needle full of Antihistamine an hour earlier and it was hard to sit. It was time to make a break for it.

We pretended to be heading to the bathrooms and then ducked down the stairs and out to a waiting cab. I jumped into the back seat still holding the IV bag above my head as Angela carried my backpack. If the bag ever got to the level of my hand, blood started flowing back up into the tube. A bad idea.

Angela ran back to her place and I was left to my own ingenuity to get into my own room. I figured out how to hang the bag from the fire extinguisher box using my teeth. I then used a low, wide martial arts stance (that didn’t use my injured knees) to stay just below the glucose bag while using my one free hand (the one without the protruding needle) to pull out the key. With my teeth on the bag again I was able to use the key and get in. I got the IV bag attached to a coat hanger and hung it from my clothesline. Angela eventually came back and used a bathroom suction cup hook and my duct tape to attach the bottle to the wall so that she could keep an eye on me until the drip was over. I was worried about falling asleep with the damned needle in my hand. I hate needles. We watched “Mad Men”.

“Mad Men” is a fascinating thing to share with a Chinese girl and I paused it often to explain, “you see, that’s funny because…” Lots of interesting history there, all of the jokes based on the understanding that we Americans, for the most part, just don’t think like that any more. We don’t treat women that way. We know about the dangers of chemicals and cigarettes. It was a great moment of perspective to see how much of these things are still getting worked out today in China.

So yes, it’s terrifying thinking that I may be losing my mind. The long term effects of CO poisoning, if that’s what this is, are varied. Sometimes things clear up. Sometimes they don’t. I have moments where I still seem to be able to write, like this, although I have to pause here and there to get my bearings. That gives me hope that I’ll be able to write some more before my turn is over, even if I’m stuck like this. Sharing perspective with people… it’s always been the most rewarding for me. Making people smile, laugh, or look at themselves or the world with fresh eyes. I hope I can go on manufacturing rose-colored glasses for the masses, even if this passes.

photos link to photographer’s sites

There are a lot of things you can’t get in Fuzhou, China but what’s much more interesting are the things that don’t even exist as concepts. I remember reading a great science fiction story about a portal between two universes where the civilizations on each side realized that they couldn’t exchange physical items but they could exchange ideas. Like the idea of paint. When you think about it, it’s pretty ingenious. Without the idea of a coating that you can spread over a surface to protect it and make it fuchsia, there would be no quest to figure out how to make it.

Here in China, I was desperate to find a way to learn the new vocabulary being taught in our classes. I couldn’t seem to use a simple list, and I remember how powerful flashcards were for learning. Of course, to make flashcards you have to have to scribble on little blank cards. The concept of the notecard… doesn’t exist in China. Trust me, I’ve looked and asked everywhere. Of course, when I think about it, why would they? Notecards are something that was very useful in America when people had piles of addresses or recipes. While Americans filed piles of neat little paper cards the Chinese people were all still farming. By the time everyone here in China was building offices, they had computers to keep track of their addresses. The only reason notecards still exist in America is because people found thousands of completely different uses for them. Like making flashcards. Eventually I found an art shop with thick water color paper and a rusty paper cutter in a back room of my school. The other students marveled at my bizarre way of learning and, as they laughed, they picked them up and used them.

There are a lot of other things that don’t exist as concepts. My friend Fay Lee could not be convinced that the thing I described, something called, “paper towels” could possibly have any use. Toilet paper was clearly just as good. “Look, I know it seems strange and wasteful and, well, just plain doesn’t make sense but… they’re thicker. And sometimes when you clean certain things you don’t want to use the same towel again.” She wasn’t buying it.

There is one concept, though, that brings foreigners to hysterics almost as fast as the Daoist driving. When I arrived this semester, just in time to start classes, I heard through word of mouth that classes were starting a week later. There was no reason given, and I would have sat in a room by myself if I hadn’t bumped into another student to hear about it. I heard a rumor that it was because some admin through that not enough students had arrived in town yet. My friend Martina Zucker scheduled travel after having a school administrator, after a lot of pushing, give her a date for final exams. When the time came, the exams were randomly pushed back and Martina had to either miss them or tell her parents to stay home in Germany and cancel all of her plane tickets.

Then, suddenly, after many complaints and a huge increase in foreign student enrollment, something completely unprecedented happened. An otherwise normal day of classes ended with the teacher suddenly passing out neatly printed calendars, with nice photos, on cardstock. We couldn’t believe it. We… didn’t believe it. There were dates marked for vacation time and the start of classes. (Nothing about exams.) After some wonder and cautious delight I quickly asked, “wait, so are these really the dates these things will happen?” “Well,” my teacher replied, “of course they are likely to change. They are already talking about pushing back the start of classes next semester.” So in response to our desire for a schedule, they gave us, well, something resembling a notecard.