Monday, December 14, 2009

How I Got “Lost” (aka Dumped) in Shanghai Wearing Six Inch Heels

My first night in Shanghai, after drinking about the best cup of strong, bracing, but tenderly brewed Earl Grey tea I have ever tasted in my life, elegantly poured by a communist butler in white gloves with a perfect English accent, and after having a bubble bath that smelled like lotus blossoms (or so I imagined the heavenly flowery scent to be smelling like, what with being in the orient) and after falling asleep in that bubble bath and waking up in tepid water, shivering and covered with goose bumps just in time to hurriedly dress for dinner, I rode downstairs in the lightbulb-studded elevator and found the Red Rose Restaurant.

Peti and Fabulous Frank (the PR guy from Arisa Pharmaceuticals) and L.R. Shen were already sitting at a round table and there was a chair there for me. I know L.R. pretty well already from the world circuit. Advisory Boards and International Meetings and such. He is a well-known nephrologist who has published some plenary papers on lupus kidney disease, including one using BeStaturan, Peti’s and Fabulous Frank’s company drug.

The walls of the restaurant were covered in deep red brocade silk and everything else was white, white tablecloths, white chairs, white tiled floor, white lilys on the tables. The place was frigid. Like they were bragging about how much energy they could use up with too much air conditioning.

But the cuisine was spectacular. It was served banquet style, and if you avoid the chicken feet, real Mandarin food is a whole lot better than what you get in New York. My favorite is the shark fin soup and there is also a sort of coconut tapioca pudding that they serve to clear the palate halfway through the meal, other than that they put dish after dish on a lazy susan and I had no idea what any of it was, but what you do is grab the good stuff as it spins around.

“I notice you are avoiding the chicken feet. You do not like chicken feet?” Peti asked me snobbily, biting daintily into a claw with her pearly white fangs.

“I like everything else, though.” I said.

Peti was wearing a bright red silk Mandarin jacket with cobalt blue on the inside, which you could see from her rolled up sleeves. Her hair and makeup were perfection. Were those diamond earrings? She had on a pleated skirt with deep pleats and patterned stockings and six inch heels, also in cobalt blue. Beside her I was actually feeling a little dumpy in my Misook jacket and cheap black functional undergarments. It occurred to me that if I were wearing shoes like hers, however, I might look pretty good.

“By the way, you can’t show Martha’s slides tomorrow after all,” Peti smiled. I hope you have another talk ready that you can give.

"Huh?" I said. “I thought I was supposed to give Martha’s slides, she sent them to me.”

“I have decided that L.R. will give those slides along with the results of his studies. So please email them on to him tonight. and please email Frank another talk that you can give.”

She smiled at me with limpid eyes, like a cat testing his claws on your leg, letting you know that there is no plan to actually scratch you, just sink the claws in a little deeper than they already are, O.K.?

“I am sure you can come up with something else to talk about by tomorrow. Alright?” she mewed.

“Sure, “ I said.

She looked surprised. Obviously, she did not know who she was dealing with.

I carry dozens of 40 minute talks on lupus any one of which I can give at the drop of a hat. What would you like? What causes lupus? The clinical spectrum of lupus. What causes heart disease in lupus? New treatments in development for lupus. Etcetera. Take your pick. Whatever. I am ready.

LR shifted in his seat, uncomfortably. “Della, its OK, if you want to give Martha’s slides, I have plenty of slides I can show without that,” he said.

“Not a problem,” I said, nodding happily to fabulous Frank who was leaning over and refilling my plate with some little slimy vegetables that I thought were delicious.

He had obviously picked up on my enjoyment of the first helping of the slimy vegetables. That’s the kind of guy he is, quiet and observant and helpful.

In fact if only here were a little less quiet, I might go for him.

“I guess I will give a talk about what causes Lupus.” I decided.

“Well I don’t know,” said Peti. In the morning you are talking to patients and in the afternoon you are talking to primary care doctors. Neither one of those groups will be able to understand a talk with too much basic science in it.”

“Don’t worry,” I replied, “I know what I am doing.

“I hope so,” said Peti, “Meanwhile you must try a chicken foot.”

She scooped up three chicken claws which had not been boiled enough to release all the dirt from their scrawny looking toenails and dumped them on my plate, right over the delicious slimy vegetables. I did my best to smile and not gag.

The next morning, I came down to the lobby at 8AM as had been pre-arranged. The lobby was stunning, about three stories tall with long marble columns and chairs surrounding a huge brocade rug the size of a football field. Beautiful business people were posed around in small groups, impeccably dressed and carrying real leather briefcases. It looked like a 1930's movie set. And they looked like extras.

Peti and Fabulous Frank and L.R. were standing near the door. I tottered over to them in my brand new, emerald green alligator Jimmy Choo-like Chinese knockoffs. My butler had scored for me for less than a hundred dollars during the night.

It was a little wobbly to walk, but I looked fantastic. Picture it. Black Misook Nehru jacket that practially took twenty pounds off me, my real pearls, the beautiful set with the Victorian clasp to die for, my best pair of crappy but flattering black pants from Walmart, ending in those fabulous shoes. With the 6 inch heels to die for.

Click, click, click, I clicked, having stepped off the rug onto a wide expanse of marble in order to make the grandest entrance possible into my day. As I approached my traveling companions, (with my hair still looking pretty good from the Vancouver airport makeover), I picked up admiring looks from Frank and L.R.

“You look very nice.” Peti said. “But please do not primp so long tomorrow morning, we are late and must leave now.”

“We are? Late? Are we going to get some breakfast?" I squawked "I’m starving.”

“Yes, but didn’t you get my email?” Peti said with feigned concern. “We all met for breakfast at seven and now there is no time for you to eat.”

She had not sent me an email. “Silly me,” I said, trying not to cry.

“Let’s walk to the auditorium, its less than a mile,” said Peti, eyeing my 6 inch heels. "And we have plenty of time!"

She was wearing Taryn Rose flats and of course the boys can always walk. They took off at a brisk pace, with me on my stilts, lurching behind, doing the best I could to appear serene.

The streets were already full of people and the smog could kill you in a few minutes. My blood sugar was plummeting and I stole wild glances around, wondering if there might be a bagel stand in Shanghai.

From time to time Fabulous Frank or L.R. would look back to see how far behind I was, but each time one of them slowed down for me, Peti would grab their arms and speed them up again, laughing and joking in a lovely manner to them.

By the time they got to the auditorium, my feet were throbbing painfully in the shoes and I was several hundred yards behind. Every step was a new nightmare, but at least I had our destination in sight. I was resolved to take care of myself. And get some food!

I had seen a a little storefront where they were displaying some bread two blocks before, and I made myself limp back there, and bought a few things to eat. Peti had made sure at the airport that I did not stop to change any money, claiming that she would be taking care of everything for her KOLs on the trip. However, my Butler had given me Yuen in change for the shoes that I purchased from him with dollars. This was fortunate because this little storefront did not look like the kind of place that took dollars or credit cards. We operated pretty well, though, me and the vendor, using Yuen and sign language. “Thanks, lady,” said the woman behind the window. “Niha.” I replied and we smiled at each other with newfound trans-Pacific camaraderie.

When I finally arrived at the auditorium carrying my greasy little paper sack of food, Peti actually looked relieved for a second or two. They ushered me to a table up on the lower platform near the steps to the podium and thankfully it had a curtain in front of the table so I was able to slip out of the shoes and start eating my breakfast.

The auditorium was huge, probably could seat a thousand people, and it was rapidly filling up with young women with lupus. I offered a roll to L.R. who was sitting next to me, and he politely said “no thanks.” I think he wanted it though.

Suddenly Peti was up on the platform with us. “You will talk for one hour," she told me, "then L.R. for one hour, then we will have lunch. So don’t eat too much. You will get fatter eating those.” She sniffed at my breakfast.

“I will talk for forty minutes,” I said. “We need at least 20 minutes for questions.”

“Questions? Chinese patients will not ask you any questions.” said Peti.

I have lectured to lupus patients all over the world. I know better.

“Let’s see what happens,” I said.

Peti scowled, then suddenly she leaned over and put her arm around me and smiled. A flash went off from just below. Fabulous Frank was taking our picture.

“The patients will not ask any questions,” Peti hissed. “You are in China now. Our patients are obedient and very ignorant and shy here.”

“I will pause at the end of forty minutes,” I said. “If there are no questions, I will just keep lecturing.”

“Fine,” she said, "we agree then that you will be lecturing for an hour. However, I don’t understand any of the slides you brought this looks like a basic science talk and the patients won’t be able to comprehend what you are doing. You will bore them to death, which is why I want our data on BeStaturan presented by Dr. Shen."

I didn't say anything. I was chewing. Besided what could I tell her? That she was out of her league and didn’t know it?

In a minute a young Chinese woman approached the dais, and shook my slightly greasy hand vigorously. “I am Veronica, your special translator for the lectures” she said.

"How do you do, Veronica?"

“I am young nephrologist from Shangai, and I love your new slides. Would you let me keep them of a copy? “

“Sure, “ I said. I am famous for my powerpoint slides and I email them around to anybody who asks. They usually give me credit for them when they show them. I know because I hear about this from all sorts of people all over the world.

“I did work enormously hard in your behalf to put the Mandarin translation on the slides from using before,” explained Veronica. It very really upset me, very sad indeed, when Mrs Petronella said to me at the last minute to give your slides to the other Professor. I saw you give a most wonderful talk ever at FOCIS in Copenhagen last year. I wondered what you would ever do now at last minute.”

I gave her the OK sign. “Nothin’ to worry about, kid,” I said.

“Thank you,” she said. “And now I see what you are doing and I love your slides that you email at Mr. Frank last night. No words at all on any slide, and you have display the entire lecture in pictures, I think this is greatly wonderful."

"Thanks," I said.

"No wonder Mrs. Petronella wanted for you have this different talk. She is probable, just like me and very admiring for you.”

"....or something.” I muttered darkly.

“ I did not know how you could show English slides to patients with no Mandarin translation and keep them in staying to attention, but you have made beautiful, beautiful pictures with no words on them, so if I can translate the words you say, it will be incredible event for these patients to see the pictures and hear the words. Like the cinema.”

“Thanks,” I said. “This is an experiment that you and I are trying, but if you can bear with me, it might be fun.”

“I hope you can bear with me, too,” she said. “I am your great admirer so I will try to say my words just as you do. Do you wish to have a literal translation of every sentence?”

“Oh no,” I assured her, “that could be confusing. I will give the general points I want to make, and you just do your best get the main ideas across in your own words each time I pause and look at you. Just do your thing.”

“Excellent,” she said. “I am in love to do my thing. And I will do your thing also Professor, I will not let you fall down."

Peti was up on the podium, tapping on the microphone. Then she launched into a stream of Mandarin.

“By the way,” I whispered to my special translator. “Where did you get the name Veronica?”

“It will not be my real name, but we all use an English name for the comforting of you Europe people.” she explained.

“That’s so polite,” I said, feeling a little guilty for not having a Chinese name.

“We are all excellent at polite.” She affirmed.

“So do you think the patients will ask any questions?” I asked.

“I do not know what may happen.” She shrugged. “We never doing this before. The patients in China go to clinic and they are told what to do. They never ask questions. And I believe that is not the best treatment for them.”

A stream of loud, indecipherable Mandarin which taxed the microphone so badly it gave a little squeak, ended up with Peti turning to me with a flourish and saying “Professor Della Sugar!”

I pushed back my chair, wiped my mouth, climbed up to the podium, and bowed. Peti was speaking in Mandarin again, evidently introducing my translator, who walked to the opposite side of the dais and bowed exactly as I had done. The patients giggled.

Veronica and I grinned at each other, each communicating that "funny" was OK by us.

“Niha” I said cheerfully.

“Hello!” Veronica translated said without a hitch.

The entire audience laughed. I waited a beat or two until the laugh was on the downswing, and launched into my talk.

I asked the patients how many of them had been told that lupus is your own body attacking you.

Veronica looked at me. I nodded to her and she translated what I was asking. Most of the patients timidly raised their hands, looking curiously around at each other.

“So like most patients around the world, you have been told that your body is attacking you. And nothing can be further from the truth.” I said.

When that was translated, they all looked stunned. I am used to that. It is the same thing everywhere.

"And,” I continued with a touch of asperity in my voice, “ I have always thought what an untherapeutic thing it is to tell someone their own body is attacking them.” Paused for the translation.

“What are YOU supposed to do with the idea that you are attacking yourself?” I shrugged eloquently.

Veronica translated and then shrugged in an exact mimic of me. Everybody laughed.

I smacked my own cheek. Hard. So did Veronica. The patients applauded. Peti was rolling her eyes in disdain.

"Your bodies are not attacking you!" I shouted. "They are trying to defend you. They are just a little off balace, that's all, and what we need to do is find better treatments that no longer are trying to fight with your body but will be gentler on you, and help put things back into balance!"

After the translation, somebody shouted something. Veronica smiled. “She say, do you have lupus? You have extreme perfection in the way to understand us!”

“No,” I said. “I don’t have lupus, but I have 420 lupus patients.” When that was translated, everyone applauded again.

I explained that it is true that the immune system of a lupus patient causes unpredictable flares of inflammation in different parts of the body and if you don’t really understand what is going on you might reasonably think that the immune system is attacking you. Veronica translated that.

I started showing the slides which were cartoons of DNA, chromosomes, the use of genes for blueprints in the manufacture of proteins, the interactions of proteins in the bloodstream, the complex communications of the inflammatory peptides to maturing immune cells, the triggering of autoantibodies and the defects of immune down-regulation that eventually lead to lupus. I showed the exact same slides that Peti assumed no one, not general doctors or patients, would ever understand or be interested in.

But I told the story of lupus in simple English, and my excellent translator was rapidly mimicking me. All eyes were riveted on us and, for the next 40 minutes, whenever Veronica or I stopped talking, you could hear a pin drop. It was a little scary during the performance, since I had no way of knowing what Veronica was actually saying. However, L.R. told me later that she did a fantastic job of explaining what I was saying.

I said that everyone is born with some proteins in their body that they inherit from their mother and some that they inherit from their father. I explained that there were thousands of proteins that interacted to form the immune system. And the immune system is here to protect us from viruses, bacteria and cancer cells.

The immune system is like a large army, and when part of the immune system recognizes something in the bloodstream that should not be there, it is important to let the rest of the army know so that it can fight the thing off. The way that the different parts of the immune system interact with each other to signal danger is that the little proteins communicate, sort of like shaking hands.

Imagine, I said, as Veronica rapidly translated, that some proteins shake hands a little more strongly and other proteins shake hands a little more weakly so that the signals that are sent out to the army are increased or decreased based on the strength of these communications. And then imagine that very small differences between proteins can be inherited from your mother or father. If one or two proteins are shaking hands weakly you might get a few more infections in your life than the rest of the population, but you will generally be OK. If a few of your proteins are shaking hands more strongly, you might have an immune response that is sometimes a little too strong so maybe you will develop a lot of inflammation when you get a cold (pantomime having a great difficulty clearing out my nose to great hilarity of the audience, especially when Veronica did the same thing)....but you will generally be OK.

What do you think would happen if we all had the same immune system? I ask this and pause dramatically, waiting for the translation. And the response.

One young woman up front says something in Mandarin.

Veronica looks impressed. “She say we would all die from the Bird flu,” she said. “And eureka, Professor, she is right on the target, is that correct?”

“Yes!” I shouted, pointing at the girl, and no translation was needed. Everyone applauded again.

“Each of us,” I continued, "must have a unique immune system or else one day some infection will come along that can kill us all. It has never happened because for every protein in the immune system there are four or five or sometimes even more little tiny differences that cause some people to have that protein shaking hands a little more strongly or a little more weakly than in other people. And with thousands and thousands of these proteins interacting and with each person getting some of these slightly different proteins from your father and some from your mother, we all end up with an immune system that is special to us. And this is what ensures the survival of the human race.

Translation. Attentive silence.

“ But it is random which proteins you get from your father and which from your mother. “

Translation. Silence.

“And some people get a lot of proteins that shake hands very strongly, so when their immune system sees something that should not be there it tends to overreact. What do you think happens to those people? They get lupus.”

Translation. Soft murmers of understanding throughout the audience.

“So….” I say and pause. And wait for the translation.

“So….” I repeat. “When somebody says to you that you have lupus because your body is attacking you….”

I wait for the translation.

“You just tell them that they are incorrect. You have lupus in order to ensure the survival of the human race.”

Standing ovation.

Fabulous Frank was on his feet too, but not Peti. She seemed to be picking some lint off her shoulder.

After that we had so many questions and people jumping up with their hands raised, that Peti eventually had to shout at the patients to get them to sit down for the next talk.

“Look what you did,” she admonished me. “You have lost control of this crowd!“

L.R. gave a great talk, too. Of course his stuff was a bit more dry, and his slides had all those Chinese letters crammed onto them, but he was relaxed and spoke directly to the patients in Mandarin, and it was clear, as he showed the same hopeful data about BeStaturan that we had been presenting that year to doctors around the world, that he too was getting his message across, and they were very interested.

After his talk, he also got a lot of questions, and he told me later than he was proud of the patients. He admitted that this morning he had agreed with Peti that my idea to have questions from patients was crazy. He said he would never underestimate the patients in China again and he congratulated me profusely for being so brave in trying something new.

Lunch was another fabulous banquet again, attended by our group and some of the prominent doctors from town, and without chicken feet. My favorite was the fresh watermelon juice they served us, so refreshing. Then we went back to the auditorium to speak to the doctors. The auditorium was, if anything, even more crowded than in the morning.

I gave a few more salient details this time about specific abnormalities in B Cells and T Cells and talked a bit about accessory molecules and defects in apoptosis, but I was delivering, essentially, the same message, and it was, again, well received. Most primary care physicians around the world are not all that up to date on immunology, and they are grateful to be educated in a manner that is easy to follow. I happen to be an excellent actress….er….speaker. At the end of the day, we had trouble getting out of the room, there were so many further questions and bows and handshakes.

“Let’s walk back the long way, shall we? “ said Peti. “We can use the fresh air.” She led us out of the auditorium into the thick smog.

My feet were screaming "Noooooo!!!!." I had not noticed how tight my shoes were getting during my talks because when I am on a stage I am oblivious to earthly problems, and lighter than air. But now I was definitely back on earth and in pain, and we had barely stepped onto the street.

Unfortunately, I have a severe psychological impairment, gotta be a tough guy.
So, in spite of the increasing distress of my blistered little sausages cramped into the contracting toe boxes of the Jimmy Choo knockoffs, I strode out ahead with anguished pride, head held high.

I soon fell back. About 500 feet behind the others. Peti was practically power walking, dragging the men in her wake, and I was rapidly deteriorating.

Finally, humiliatingly, I had to stop for a second. We seemed to be on a series of terraces that had an outdoor market, which flowed down a long series of steps. Everytime I tried to go down to the next lower level, pain was shooting from my toes to my ankles where the shoes were literally cutting into the skin, and my ankles were wobbling crazily trying to step down into excruciating pain while balancing on those nightmarish 6 inch heels. I stopped.

I saw some pretty little silk purses for sale nearby and used that as an excuse for stopping, I could pick one out for my daughter. It was very hot there and I started to perspire while grazing through the merchandise, sorry that I was wearing a knit jacket. My feet felt a little better, just standing there. I took a tentative step and that was a mistake. OUCH! The sun beat down on me. I hate the sun. I picked up one of the purses and smiled at the vendor. He smiled back at me with rotten teeth.

Sweat dribbled from my forheaad into one of my eyes, making it burn. The bright red, gold, blue colors of the little purses were starting to swim. The sweat in my eye burned worse and I had to rub it. Nothing was helping. I was exhausted. Have you ever given two talks with a huge elegant banquet in between? Where you eat too much? And then talk for another hour?

I looked for my colleagues and they had disappeared. I dropped the purse and tried to hurry after them, but my feet were in full rebellion in those shoes. I stopped short near the top of the steps to the next level. Suddenly I was surrounded by beggars, had they been waiting for me?

They were reaching out at me, grabbing at my arms, and I shook a couple of them off. But more were swarming up, reaching for my purse, gently touching me on my back, this was really creepy.

Was I imagining this,or were they trying to guide me down the stairs? My heart was beating hard. I looked for the vendor with the rotten teeth and he was not there anymore. Everything was disappearing, the sky seemed to be dimming. I blinked rapidly.

I was feeling a little unsteady and realized that the swarming beggars were tilting me off balance. For a second I thought I might fall right into their outstretched arms. “Don’t panic,” I told myself, “don’t let them see you sweat,” although it was a little too late for that.

I realized that I might faint. There was a long tunnel of purple blackness emanating from my eyes. As if from a distance, I also was worried that somebody had lit a match and set my feet on fire. But that was my imagination.

They had led me to the edge of the stairs and somebody was pushing me a little harder, they were about to push me down the stairs and kill me.

“WHAT THE FUCK DO YOU THINK YOU ARE DOING?!!!!!” I screamed.

The beggars scattered to the winds. The nice thing about a newly industrialized communist country is that the criminals are amateurs.

I took my beautiful Jimmy Choo knockoff shoes off my feet and ran down the stairs in my stocking feet, trying for the general direction my companions had last been seen, still very shaky and nervous, but happy to be alive and even happier to be able to move again. I got lost in twisting streets full of people walking, biking and driving like maniacs for a little over an hour, thinking what a fool I was to go traveling with a psychopath without even knowing the address or name of my five star hotel.

Finally I spotted the gold domed roof of the hotel, and remembered that it had a gold domed roof. Running for it, I stepped on some broken glass, but it was only a little cut. Otherwise I was fine. And I was back. Whew.

The lobby was cool and serene, still adorned by groups of beautiful, glamorous business people or movie extras, whoever they were.

Peti and Fabulous Frank and L.R. hailed me from the bar, where they were comfortably seated on banquets around a little table with tall, cool-looking drinks.

“Did you have a nice adventure?” Peti asked me.

“Lovely,” I said. “Shanghai is such a beautiful city.”

“You must not walk around without shoes, dear,” she tutted. “It does not look nice.”

“Yeah, I’ll keep it in mind,” I muttered, heading for the elevator.

Planning to call my butler right away for a tall, cool-looking drink of my own, with my favorite company.

Me.

Ha!

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