It was a sort of slow realization. First the dustied window of a regular shop appeared, the words “laundry” in the window, with pale blue siding framing torn out Chinese paper and detergent. Then, a tattered book cover came into view, surrounded by others, old worn copies with tags sticking out of their middles like belly buttons on the top of their heads, displaying the author, title, and date of this edition. It was here, on the blue LCD screen of my personal TV on Cathay Pacific airlines on my return from China, that I got my first glimpse of home.
The sense was one not unlike when I was a child, pretending to sleep in the back of the car one of my parents would drive as we returned late at night from a trip. As we curved up the steep hill of my driveway I would watch the stars flicker overhead before pretending to be asleep again so that my father would carry me back into my home. I remember the way my bed felt when I sat on it the first time after living in China for a year, the way my body sank back into it, as if the silver stars painted on my walls responded in relaxing, as if they were awaiting my return.
I have mourned the loss of that house and those moments for years and now, I can finally say, that I have found another home. It consists of Roma and Bea and Frances running outside my room and the cobblestone streets outside my apartment building. It’s tied up in scattergories on my front porch and bottles of wine by the Hudson river. It is New York, and 338 west 12th street and I could not be happier to be returning, to my home.
It was hard to lie in these past few days. I’ve been lying all summer to people, telling them I am doing education work, telling them I merely have tutors and am studying Chinese, telling them (perhaps the worst lie of all) that I am merely a visitor for the Olympics. In the past weeks, however, as I said goodbye to the security guards, restaurant owners, illegal cab drivers and the like who composed my daily life, that I planned to return to China soon, that I would be looking for jobs here after I graduate and that I was only counting the days and moments until I could return. Which is, of course, not true.
I think there are many reasons why I did not find my central happiness this summer. I don’t like to say I was unhappy because I wasn’t but, it was certainly filled with more frustration, anger and dissatisfaction than I’ve found with my incredibly blessed life in New York. To start with may be the job itself. For those who did not know I was researching access to treatment for children living with HIV and AIDS this summer. I still haven’t processed it enough to be able to adequately write of the experience, and my over active body tenses up at the thought of tackling the task at the moment, let’s just call it the single most challenging, frustrating, defeating, depressing and inspiring job of my life. Least of all because it taught me so much of who I am and what it is I want, no, what I need to be doing with my life. And that need, at this time in my life does not, I fear, involve working on academic human rights issues in China. Though a report will be written which I will pour my heart into and changes may be made or, more likely, ignored, when I graduate in the spring of 2009 I hope and fervently wish and dream that I will continue my days walking by that dusty bookshop, stopping in once in a while to peek at the inscribed words written decades ago by a memory long since made.
Before I land, however, there are certain moments that I have held inside my mind that I hope not to forget which I hope to inscribe below so forgive me my last indulgence into keeping these moments from slipping beyond the grasp before my brain once again becomes packed with case law and let me send these moments into the void of cyberspace to be perused once and again, perhaps when I am in class.
One must start with the entire story of Ryan which is a blog post in and of itself. I shall post that soon.
Other moments:
At my school in Namu, children wait for me outside the second story of my school teacher dwelling. This especially occurs following the book ceremony where the money I raised so many years ago was finally put to good use. They sit in groups, fourth grade girls stuck in between childhood confidence and teenage embarrassment, ready with pens and notebooks, drawing to soak up the time I spend sleeping or reenergizing myself. The boys sometimes come, one is particularly loud and self aware, others act ashamed of seeing me in a too cool sense, rolling their eyes upward and looking off to the right when my host teacher asks them how long they were waiting for me. Before, when I lived here for a month, it was easier. The time was not so consolidated, the first few days were madness but the novelty of myself wore off. Now however, with new school children added to the old, the impromptu English classes and spur of the moment games and wushu classes literally turn into hundreds of students trying to engage themselves. Some are disruptive, purposefully mocking the way my voice sails high in the air when I get excited, kicking their neighbors when I lead wushu exercises. Others are overeager, barreling into me in waves of black-haired school children, bags and all. At one point a game of “fishy fishy cross my ocean” multiplies, like it’s own version of blob tag. Ten children turn into 20, 50, 100, 150, as word that teacher zhang is playing games in the lunchtime break weaves its way down the main road. Finally, there are too many children and I am too tired. “Who wants to run?” I ask. “ME!” shout nearly 50 kids, more boys than girls, and I am off. Running through the school gate in my white flip flops and long green skirt, making a left out of the paved school yard into the dirt road of Namu village, 75 eager kids dancing in my wake.
I am on a bus on the way to the support center for HIV positive women who are former Intravenous Drug Users (IDU) and current sex workers. I chose a back seat on the bus so I can open the window wide and let the wind toss my hair as I blast my ipod on a chosen playlist, jam packed with upbeat poppy songs I can release myself in as I reach the last week of my fieldwork which I am grateful for but which is exausting. A family comes to sit beside me in the back seat. A father, mother, aunt and two children. One 11 year old boy and his 4 month old baby sister. The boy sits next to me, nervous and shy. I ask him a question in Chinese, he turns smiling to his mother and doesn’t answer. I turn back out the window and discreetly mouth along to the music on deck. We make a pit stop and scores of women and young boys and girls hold high baskets filled with sweet smelling wine grapes up to our window. I open in and hands and baskets fly through the gap “3 kuai, green grapes, purples grapes.” I buy a bag and share it with the family. In between seed spits the boy points to my ipod and asks what it is. I hold up one earphone and place it into his right ear so we are each listening to one half and this is how we continue the trip, me and this boy listening to Miley Cyrus and Maroon Five as we roll through the highway cutting lines through the countryside.
Of course, there are others, the conversations with my illegal cabby who brought me to work most mornings, watching Micheal phelps win his seventh gold medal, cartwheeling with hip hop dance crews in the Olympic green, but these moments with these children are what I will miss most about this country and are what make this decision particularly guilty to face. There is a raw ability to form connections here, for those who are willing to take it, a conversation, a smile, an interaction which makes an imprint like a hot iron pushed to the skin. Of course it is because I am white and foreign and new and a novelty and have a certain lack of embarrassment, but it is there for the taking. I wonder if the same can happen in New York or if we are too jaded, too hardcore, too full of ourselves to allow those moments to exist and thrive. I wonder if I miss the experiences of New York and the long lasting connections and if those outweigh the adventures and challenges that lie in China. Sometimes I hate myself for feeling like I am giving up. Sometimes I love myself for knowing where I belong at the moment and what is right for me. And I shouldn’t dismiss my NY work, a place filled with so much injustice and inhumanity squeezed packed between its cracks it’s a wonder it hasn’t yet imploded, but knowing there are solutions here and that I can use them makes you feel bad you’re not continuing for those solutions to merely EXIST in a place where so many, maybe more, need them too.
For now, however, I need to allow myself to be in New York and be where I am. A place where the work is hard but I love the life which surrounds and supports it. And that, I now realize, is and important inextricable piece to the lives that we lead.
Thursday, August 21, 2008
Ryan
My first thought as I entered into the room was “I have gotten off way too easy.” While I’ve spent the past two months traveling in China, AIDS in my backpocket, listening to stories, writing interviews, viewing medicines and staying in support centers, I hadn’t been confronted with the reality of the disease until this moment. We all see pictures of those with HIV/AIDS in the news, on TV, in the papers. Well, at least we used to decades ago, when the disease was on the brink of everyone’s minds and before it was forgotten in times passing. The children I’ve met with so far, their HIV positive parents, the youth taking daily doses of medication, while their hearts were breaking and the effects of the disease had no doubt ravaged their bodies, minds and hearts, their outward appearance was much like my own. Enough muscle on the bones, even complexion, some were even a little plump, surrounding their bodies with additional nutrients and padding with which to sit on a chair. Not Ryan. Ryan is thirteen but he looks like he is eight, his skin is darkened so he looks more middle eastern than Chinese. His arms are thin and fragile, I imagine taking my hands, my tiny hands which my piano teacher always criticized for being so small, and connecting my thumb with my middle finger to create a small circle. This boy’s arms, this 13 year old boys arms, could easily slide in between that circle without touching the sides of my fingers, as if I was a large jade bracelet to slip over his skin. The skin pulls at his body, like there’s not enough of it to cover the bones that are left of his remains. His chest is larger than you would expect, like a giant robot torso connected to little arms and legs, his father tells me he is better now than before he came, when his stomach pushed out so far that he couldn’t receive the piggy back rides from his father which is how he often gets around now.
Now that the treatment has worked, however, (though what worked means in a situation like this I have no idea) , he can once again receive the back of his father against his stomach, arms clasping his shoulders. This is how he walks through the latter half of tian an men square, the exertion of crossing the great plains front half being too much for his body to exert any more energy. I have hired a taxi to take Ryan, his father, and the NGO worker who introduced us, to take the four of us around Beijing, where Ryan has never been. What he has seen most so far is the blank white walls of his hospital room, possibly the green trimmed corridors as well as he moves through them to get dinner in the hospital or in nearby restaurants. We find an air conditioned taxi, I insist on a driver who doesn’t smoke even though both his father and the NGO worker, Nick, smoke a few cigarettes each throughout the day, and we are off.
Despite the new traffic regulations the roads are still horribly blocked today, as it is three days from the opening ceremonies of the 2008 Olympic games. My tickets burning a guilty hole in my purse, I ask Ryan what events he likes the best, he shrugs and says he’s not that into sports. Throughout the day as I ask him questions both his father and Nick comment on how he’s not the same boy as he used to be. He used to be talkative and lively and now, well, his heart isn’t good. His father keeps a small thumbnail size photo of his son on his phone. It was taken two years ago and the boy is utterly unrecognizable, his skin is fair, his head round and pudgy, mouth open in a smile exactly proportionate to his face. There is no chance I would ever place these two boys as one in the same. That is not to say he is completely despondent, he smiles waving a Chinese flag that a college age student gives him, posing in front of the Olympic bird nest from across the road as he is too tired and dizzy from the stop-start car ride to the venues. Moments after the picture is taken the girls mother remarks, clicking her teeth at his father, “he’s so skinny.” The father waves her away and shoots back a look that reads, “thanks bitch, I couldn’t tell.”
The cameras keep clicking all day. We brought our own but it is clear that we are quite the scene in Tian an men square which is crammed with people, flowers, and giant billboard type sign displays welcoming the 2008 olympic games. People stare at the boy, at me and the boy, at our odd grouping. When him and I pose in front of the Disney sized “one world one dream” sign, a Chinese photographer steps in front of his father and clicks rapid fire shots of our faces. It is awkward and uncomfortable and I can’t imagine what it is like for the father himself. People think they boy is not being taken care of, that he is being starved, maybe some realize he is sick and is that better that they realize or worse that they continue to stare? I want to smash the cameras on the ground like I have seen so many do before in this square when images are being captured of what someone doesn’t like. I want to take the legs off of the healthy boys and girls and place them on Ryan, and to let him run through the giant expanse of space. After the photographer incident, we walk in awkward silence, I ask Ryan if he wants to see a trick, he says yes and I walk on my hands through tian an men square, trying to dissuade the tension and take so many eyes off this boy who only wants to see Beijing.
I think the hardest part about this is my utter feeling of helplessness in the situation. I’ve found myself snapping more in the past few weeks, becoming more frustrated at the smallest thing, feeling a tightening noose grip on my chest that won’t go away, the blood pumping through my body filled with electric lead. I’ve heard stories before, worked with clients who have been raped, been used as slaves, been locked in rooms, been kidnapped and held for ransom with a gun pointed to their head. I’ve had clients dissolve into gasping tears in my office, in the courtroom, they shake as they tell their stories, they look away, look down, or look at me as the recall the horrors of their lives which I only experience through their words. Nothing has affected me like this, perhaps, in part, because there’s nothing I can do. Though the law has many problems, a gratifying part of being a lawyer is being an agent of change. Someone is being barred from school? Let’s get them in. Your father is beating you up? Let’s trying switching custody. These are not full solutions or perfect answers but there is a visible change in what is occurring and in that change there is hope. Here, in this situation, there is nothing to do but to listen, to make the boy comfortable as we can, to hope the liquid being pushed into his veins from an IV is doing something, anything, to let this boy be a boy again. But there is no courtroom I can bring him to to make the government ask AIDS to please stop attacking his body, there is no remedy I can take to get him the medicines he needs or to reverse the time clock that gave him the disease in the first place.
The father lifts the boys pant legs up to his protruding hipbone to show my the gnarled scar, like knots in a wood, that twists up the boys leg. His foot is covered with pie crust like skin and he is missing three toes. It’s all from an accident he had when he was just over a year old, a large bottle of boiling hot water kept in the corner, a toddler unable to keep his balance, a burn across his entire body, a blood transfusion which, seven years later, produced AIDS that riddled the boys body. The transfusion occurred 11 years ago, 1997. Didn’t we know the risks by then? Wasn’t AIDS already a problem we had under control? For every moment the information lay somewhere else, in a book, in a file, another child was infected. He went on the medications five years ago, 2003, but all they had were adult meds which they had to break into pieces, getting the doses wrong, giving too much to his small body. Didn’t we have anything better by then? Hadn’t the worlds doctors come up with a child formula, one that wouldn’t push out his belly as if it contained a hard bowling ball in its center, one that didn’t bring him to a Beijing hospital where the stay has cost years of a salary made in rural China. Didn’t someone see this coming?
There are wonderful moments in this day of course. Riding in the back of the taxi cab, answering questions about America while asking the boy to tell me about his hometown. His smile when I find an American quarter for him in my pocket is only matched by those throughout the day whenever I call him “boss” or “president”. I say to him “today you are our boss, where shall we go next boss? What would you like for dinner boss?” He smiles each time through teeth too big for his emaciated face. I read the journal notes that I asked him to write for me (similar notes that I asked other children to write but were confiscated on Nick’s trip to Beijing) and my eyes well in tears as he draws pictures of children, “all sorts of children, watching tv, jumping rope, chatting with eachother.” The story explaining the pictures says that these children, “their lives are too wonderful.”
But I don’t want to end this story on a happy note, because it is not a happy one. At the end of the day, the boy will return to his hospital bed, his father will help him push his body to sit more comfortably upon it’s slanted cushion, and the father will have to look on, watching his son die, knowing there is really nothing that he is able to do for him until the world recognizes these problems more and does more to help. Not in terms of money but medication, not philanthropy but psychological assistance, the roots of the problem are inground further than the deepest pockets and though money helps to bring the chance, a different key must be turned to restore the fates of these children and their families.
Now that the treatment has worked, however, (though what worked means in a situation like this I have no idea) , he can once again receive the back of his father against his stomach, arms clasping his shoulders. This is how he walks through the latter half of tian an men square, the exertion of crossing the great plains front half being too much for his body to exert any more energy. I have hired a taxi to take Ryan, his father, and the NGO worker who introduced us, to take the four of us around Beijing, where Ryan has never been. What he has seen most so far is the blank white walls of his hospital room, possibly the green trimmed corridors as well as he moves through them to get dinner in the hospital or in nearby restaurants. We find an air conditioned taxi, I insist on a driver who doesn’t smoke even though both his father and the NGO worker, Nick, smoke a few cigarettes each throughout the day, and we are off.
Despite the new traffic regulations the roads are still horribly blocked today, as it is three days from the opening ceremonies of the 2008 Olympic games. My tickets burning a guilty hole in my purse, I ask Ryan what events he likes the best, he shrugs and says he’s not that into sports. Throughout the day as I ask him questions both his father and Nick comment on how he’s not the same boy as he used to be. He used to be talkative and lively and now, well, his heart isn’t good. His father keeps a small thumbnail size photo of his son on his phone. It was taken two years ago and the boy is utterly unrecognizable, his skin is fair, his head round and pudgy, mouth open in a smile exactly proportionate to his face. There is no chance I would ever place these two boys as one in the same. That is not to say he is completely despondent, he smiles waving a Chinese flag that a college age student gives him, posing in front of the Olympic bird nest from across the road as he is too tired and dizzy from the stop-start car ride to the venues. Moments after the picture is taken the girls mother remarks, clicking her teeth at his father, “he’s so skinny.” The father waves her away and shoots back a look that reads, “thanks bitch, I couldn’t tell.”
The cameras keep clicking all day. We brought our own but it is clear that we are quite the scene in Tian an men square which is crammed with people, flowers, and giant billboard type sign displays welcoming the 2008 olympic games. People stare at the boy, at me and the boy, at our odd grouping. When him and I pose in front of the Disney sized “one world one dream” sign, a Chinese photographer steps in front of his father and clicks rapid fire shots of our faces. It is awkward and uncomfortable and I can’t imagine what it is like for the father himself. People think they boy is not being taken care of, that he is being starved, maybe some realize he is sick and is that better that they realize or worse that they continue to stare? I want to smash the cameras on the ground like I have seen so many do before in this square when images are being captured of what someone doesn’t like. I want to take the legs off of the healthy boys and girls and place them on Ryan, and to let him run through the giant expanse of space. After the photographer incident, we walk in awkward silence, I ask Ryan if he wants to see a trick, he says yes and I walk on my hands through tian an men square, trying to dissuade the tension and take so many eyes off this boy who only wants to see Beijing.
I think the hardest part about this is my utter feeling of helplessness in the situation. I’ve found myself snapping more in the past few weeks, becoming more frustrated at the smallest thing, feeling a tightening noose grip on my chest that won’t go away, the blood pumping through my body filled with electric lead. I’ve heard stories before, worked with clients who have been raped, been used as slaves, been locked in rooms, been kidnapped and held for ransom with a gun pointed to their head. I’ve had clients dissolve into gasping tears in my office, in the courtroom, they shake as they tell their stories, they look away, look down, or look at me as the recall the horrors of their lives which I only experience through their words. Nothing has affected me like this, perhaps, in part, because there’s nothing I can do. Though the law has many problems, a gratifying part of being a lawyer is being an agent of change. Someone is being barred from school? Let’s get them in. Your father is beating you up? Let’s trying switching custody. These are not full solutions or perfect answers but there is a visible change in what is occurring and in that change there is hope. Here, in this situation, there is nothing to do but to listen, to make the boy comfortable as we can, to hope the liquid being pushed into his veins from an IV is doing something, anything, to let this boy be a boy again. But there is no courtroom I can bring him to to make the government ask AIDS to please stop attacking his body, there is no remedy I can take to get him the medicines he needs or to reverse the time clock that gave him the disease in the first place.
The father lifts the boys pant legs up to his protruding hipbone to show my the gnarled scar, like knots in a wood, that twists up the boys leg. His foot is covered with pie crust like skin and he is missing three toes. It’s all from an accident he had when he was just over a year old, a large bottle of boiling hot water kept in the corner, a toddler unable to keep his balance, a burn across his entire body, a blood transfusion which, seven years later, produced AIDS that riddled the boys body. The transfusion occurred 11 years ago, 1997. Didn’t we know the risks by then? Wasn’t AIDS already a problem we had under control? For every moment the information lay somewhere else, in a book, in a file, another child was infected. He went on the medications five years ago, 2003, but all they had were adult meds which they had to break into pieces, getting the doses wrong, giving too much to his small body. Didn’t we have anything better by then? Hadn’t the worlds doctors come up with a child formula, one that wouldn’t push out his belly as if it contained a hard bowling ball in its center, one that didn’t bring him to a Beijing hospital where the stay has cost years of a salary made in rural China. Didn’t someone see this coming?
There are wonderful moments in this day of course. Riding in the back of the taxi cab, answering questions about America while asking the boy to tell me about his hometown. His smile when I find an American quarter for him in my pocket is only matched by those throughout the day whenever I call him “boss” or “president”. I say to him “today you are our boss, where shall we go next boss? What would you like for dinner boss?” He smiles each time through teeth too big for his emaciated face. I read the journal notes that I asked him to write for me (similar notes that I asked other children to write but were confiscated on Nick’s trip to Beijing) and my eyes well in tears as he draws pictures of children, “all sorts of children, watching tv, jumping rope, chatting with eachother.” The story explaining the pictures says that these children, “their lives are too wonderful.”
But I don’t want to end this story on a happy note, because it is not a happy one. At the end of the day, the boy will return to his hospital bed, his father will help him push his body to sit more comfortably upon it’s slanted cushion, and the father will have to look on, watching his son die, knowing there is really nothing that he is able to do for him until the world recognizes these problems more and does more to help. Not in terms of money but medication, not philanthropy but psychological assistance, the roots of the problem are inground further than the deepest pockets and though money helps to bring the chance, a different key must be turned to restore the fates of these children and their families.
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