Why does any of this matter? Why do I share my story? I do it for the possibility that I could help someone else. If I had heard from another asymptomatic patient when I was diagnosed, I would not have felt nearly as alone. If I had been able to speak with someone else who was diagnosed through family screening, I might have realized earlier that it is not a curse, but a blessing. The more I talk about my story, the more confident I feel that others will be encouraged to have those difficult conversations and speak with their families about screening for celiac disease. If we can all share our experiences, perhaps we can make the journey for the rest of our community a little easier and be able to move forward with lives beyond the seemingly endless constraints of a celiac disease diagnosis.
IN the excitement of a distribution of lettersfrom which the squad were returning--some with thedelight of a letter, some with the semi-delight ofa postcard, and others with a new load (speedilyreassumed) of expectation and hope--a comradecomes with a brandished newspaper to tell us anamazing story--"Tu sais, theweasel-faced ancient at Gauchin?"
I have friends in Russia, but I know that Russians who have not become your friend can be rather unfriendly (in some circumstances; I'm not foolish enough to take this too far). A lot of not-nice emanates from behind counters, behind desks. And on Russian trains I often went without a "hello" (a word I'm actually capable of understanding in Russian). There's a historical explanation for this: czars, serfs, gulags, wars and more wars. It's a persuasive explanation: They've really had good reason to guard their own loaf of bread. But one problem with that explanation is that the folks in Central Asia haven't evaded much of that horrible history, but, on this Uzbek train, I am assaulted by -- mostly nonverbal -- friendliness: People coming in to sit beside me, even though we can't do much more than smile at each other. Foods of all sorts are offered and shared. Warmth is exuded. Invitations extended.
Two frustratingly incomplete stories: There are, apparently, snags for others at the Kazak-Uzbekistan border. We're stuck here for two hours (though no one grumbles in any manner I can understand). First story: At one point a military type and the chief conductor escort a crying woman through the car. I don't have the language to learn more.
Then a train, perhaps grungier and more crowded than our own, pulls up on the next track. "Tajikistan" a few people separately indicate to me while staring at the crowds of hot, tired individuals who fill its compartments and who are often in the process of staring at hot, tired us. Tajikistan is spoken of (in these attempts at communication) disdainfully -- there being always somewhere someone from anywhere can speak of with disdain. "Drugs," the disdainful Uzbeks manage to say. (These attempts at communications are not easy.) Second story: At one point I see a couple of guys with boxes jump on board the Tajik train and attempt to shut the door behind them. A border guard who had been standing nearby makes sure they don't and goes in after them. Then a guard leading a dog, presumably drug-sniffing, follows. I hear that dog barking somewhere in that train. I don't have time to see more. We leave. I always leave. You're used to more complete stories.
While reading about religion in Central Asia, I find the solution, if not the point, of a story I told about Africa: You are not supposed to walk between an Islamic person who is praying and Mecca. In Senegal I had done that. He had lashed out.
3 p.m. Bit of a nap ended with yet another border check. Turkmenistan? No, this time we're back in Uzbekistan. I'm okay. But they take me off the train, which has become a steam bath, and march me into headquarters -- concerned or maybe just entertainment-starved fellow passengers watching from the doors and windows. Woman in another room is wailing (yet another frustratingly incomplete story), as a nice soldier writes down my info and asks to keep my business card -- memento of the Merican. While walking back to the train, with an audience, I decided to jump youthfully to the track, slip a bit. Feel like a fool. Feel like an aging fool. I resolve to step more carefully hence. Retreat?
In the center of the roundabout more or less in the center of this city stands a statue of the locals' favorite conqueror and mass murderer: Timur. He recently replaced in this spot a fellow who probably divided human history into stages as industriously as anyone. I hope I am not doing too much violence to the power and subtlety of Karl Marx's thought if I note that theoreticians of his ilk -- grand -- tend to require a relatively flat, relatively neat world upon which to construct their magnificent structures. Out-of-phaseness can bedevil. It represents a kind of bumpiness. Marx's followers made a major effort to lift everyone in this part of the world into what they considered the appropriate stage. That was good, for a while at least, for education and health care. It wasn't so good for political freedom or the cultural traditions (variegated or not) of, say, Central Asia's nomads.
My story in Samarkand, I've decided, is the Internet. (Always fun to be able to choose your own story.) The teenaged, computer-loving, English-speaking fellow I get to give me a tour of Samarkand's handful of Internet cafes and its one Internet provider grows increasingly perplexed: Why would a professor from New York City come to Samarkand in Uzbekistan to write about the Internet? I note that Samarkand was once a center -- by some measures the center -- of world trade, a place where the world's various cultures and ideas collided. I note that those days ended many centuries ago -- killed by a new technology: the oceangoing ship. I note that electronic media seem to be expanding (redefining?) the world's center, perhaps expanding it enough so that Samarkand can find a place there once again. I ask him how often he is on the Internet. He replies, once a day. I note that that is about how often I'm on in New York City.
I accepted this invitation because I thought it would be interesting, not fun (no comment). But it is actually kind of fun. A drive through the city in a late-model Daewoo. (This chief conductor clearly does well -- side business?) Arrival at their rug-lined, recently renovated, one-Western-table, one-table-on-the-floor apartment. (They are Moslem, no-alcohol, Uzbek-speaking Uzbeks; no conflicts on the country to which they belong.) A neighbor who is fluent in English is called over to help us converse and translate some of my latest visa worry: Seems the bus I want to take to Bishkek passes through -- yikes! -- Kazakstan. Will I need tickets in order to get the transit visa? Not to worry, I'm advised. Then drinks and snacks at the floor table, followed by a more complete evening tour of broad-avenued, tree-lined, history rediscovering Tashkent. And then we stop, without warning -- this reminds me mightily of being taken out in Russia -- at what turns out to be a restaurant, for what turns out to be a larger than necessary meal. Then it's on to an aunt's house for a birthday party and more food, though I thought I said, when asked, that I was tired and ready to go home. The American being shown off. 2b1af7f3a8