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.