How Lucky: A Novel Page 10

“This front porch has mud everywhere,” she says. “What a mess.” I wheel out to the front door, and she’s right. Someone has stomped mud all over our front porch. It’s on the steps, it’s in front of both windows, there’s even mud at the feet of the rocking chair my mom bought when she visited last year. It is a sloppy, sludgy mess. By the front screen door, I see what looks like a boot print.

  Why are there footprints on the porch?

  It’s strange. I don’t know.

  Marjani sighs. There’s no time for this. This is just more shit that has to be cleaned up.

  “Probably some drunken undergrad who got lost,” she says. Travis was not here last night. Or at least I didn’t hear him. He would have come in, yes? Maybe it was one of the orderlies. But they are, by job definition, meticulous and tidy. Stomping mud all over my porch would be very much out of character.

  But there is no time. Marjani sweeps the dried mud off the porch, pushes me down the ramp, and off to campus we go.

  23.

  Athens is already buzzing. Most professors cancel any class later than 2:00 p.m. on a football Thursday and ignore Friday classes altogether, lest the students openly revolt. Even on such a lovely afternoon, getting from Five Points to downtown is a long trek, and Marjani, who has to keep up with the guy who hates being told he’s going too fast, is matted with sweat by the time we arrive. As Marjani and I approach North Campus, we can already hear the chants, a full hour before the big rally for Ai-Chin is supposed to begin.

  “Justice! For Ai-Chin! Justice! For Ai-Chin!”

  The whole area surrounding the Chapel Bell, from Broad Street all the way down to the UGA Fountain, is swarming with people, and unlike last night’s event, this is not a sedate gathering. The crowd feels more like a political rally, or even a protest. Last night was about sadness, about those poor parents and their suffering. But today’s rally has an undeniable tinge of anger. There’s a woman, probably in her late twenties, standing on the edge of the fountain with a megaphone as a few student volunteers work on constructing the dais, presumably where the university president and the senator and Kirby Smart will be standing later. She is wearing a shirt with a picture of Ai-Chin and the legend WE WILL NOT BE SILENCED. For a shirt that was only conceived and manufactured in the past few days, it’s pretty nice.

  This woman does not seem like a featured speaker, but she seems to have plenty to say. “The University of Georgia has long attempted to marginalize its Asian students,” she yells, “and the foot-dragging on finding out what happened to Ai-Chin Liao is yet another example of it. Do you think it would take two days to start looking for a little white sorority girl who went missing? It is only our voices that are getting them out here to stand for Ai-Chin. Stand up for Ai-Chin!”

  The crowd of fifty or so people scream in response: “Stand up for Ai-Chin!”

  I’m so fascinated by this woman and this protest that I zoom ahead of Marjani and, frankly, forget she’s with me altogether. (I’m soon reminded as she catches up with me and flicks my ear for taking off without her.) The woman speaks for a few more minutes, then hands the bullhorn to someone else. By the time she steps down off the dais, she almost steps on my chair, which was exactly what I was trying to get her to do.

  “Oh, I’m sorry, excuse me,” she says, and her face softens immediately. She is sweating and her hair is all ruffled and it looks like the speech took a ton out of her. I grunt slightly, It’s OK, and nod toward Marjani, who, not for the first time, must be my mouthpiece. The woman gives Marjani a quizzical look.

  “I am sorry,” Marjani says. “My name is Marjani, and I work with Daniel here.”

  “HELL. LO,” I say through my speaker, and try to grin sheepishly.

  “Based on the fact that he dragged me over here,” Marjani says, “I think Daniel wants to know more about your organization. I will admit I am curious myself.”

  The woman smiles again and waves us over, away from the crowd. “Of course,” she says. She touches my chair like it’s my arm, and I feel suddenly quite warm. She tells us her name is Rebecca Lee, and she grew up in Gwinnett County, about sixty miles away, toward Atlanta. Her parents are both first-generation Chinese immigrants and professors at Emory University. She went to school here at Georgia and stayed on as a graduate student in philosophy and is now getting her doctorate. She’d like to teach someday. I have noticed that she looks at me when she talks, not Marjani. That’s always appreciated.

  Rebecca has always been involved with Asian American organizations on campus and believes quite strongly that Ai-Chin’s disappearance, and the amount of time it took for the university to do anything about it, is indicative of a larger culture of discrimination, not only within the university but in the American scene at large. “People either ignore us or think that we are taking over,” she tells us. “We just want to be a part of this school, and this state, and this country, like everyone else.”

  Marjani interjects: “It does seem like they were searching for Ai-Chin pretty quickly, no?”

  Rebecca frowns. “Not quickly enough,” she says. “The first twenty-four hours are so important. Now it has been several days, and there are still no leads. It’s fairly typical, I’m sad to say.”

  She then turns back to me. “I’m very glad you came to this,” she says. “We need all the help we can get.” She hands me a card. “This is my email address,” she says. “Contact me anytime. We need more curious minds.”

  Oh, I have something that will make your mind curious. This woman is absolutely worth expanding the circle for.

  I’m just finishing typing “I. SAW. HER” into my speaker box when I see Marjani making the strangest face at me. She is moved by Rebecca? By this rally? No, it’s more than that. Her face is stricken in a way that’s beyond grief or sadness or empathy. She looks scared. No, more than that: she looks alarmed. She looks like there’s a bear behind me.

  She makes an “Oh!” sound loud enough that Rebecca’s soon making the same face.

  I have no idea what’s going on until I realize, Oh, I get it, I see what they’re so worked up about: I can’t breathe right now. That’s what’s causing all the fuss.

  I can’t breathe. They appear to have noticed before I did.

  I have now noticed.

  24.

  I can swallow, by the way, in case that’s something you were idly wondering. This simple statement probably sounds obvious, and maybe a little gross to you, but it’s something I’m pretty proud of. Not everybody who has SMA can swallow, and if I lose the ability to do so, I’ll never get it back. If you put a straw between my lips—and you’re gonna have to do that—I can suck water out of the straw into my mouth, back to my throat, and down my esophagus. It’s something that some friends of mine with SMA can’t do, and some have never been able to do, but I can. I can swallow. Boom.

  I cannot, however, cough. Coughing is not something that most people have much emotional investment in. You do not cough for fun. Coughing is just a thing that happens. It is the scratching of an itch, the blinking of an eye, the clicking of a tongue. I try not to think about what people who don’t have SMA take for granted on an everyday basis, because down that path lies madness, and besides, everybody has something they can do that someone else can’t: I don’t walk around all the time thinking, Man, it’s freaking awesome that I can see, I’m so lucky, even though there are blind people all over the planet. I don’t expect the able-bodied, if that’s how you want to put it, to walk around all day being appreciative of all the things that they’ve always been able to do and never thought about. Do your thing, dude.

  But coughing is something everyone takes for granted. You take it so for granted that you don’t even imagine what life would be like if you couldn’t do it. You probably didn’t even know that some people couldn’t do it.

  But I can’t do it. I’ve never been able to. SMA is a disease that attacks and degrades the muscles—it’s right there in the acronym—and among the most important of these are the
intercostal muscles. They are located between your ribs, and basically, they are how you breathe. But when you have SMA, your intercostal muscles are weak, essentially from birth, and muscles that are weak when you have SMA don’t get better as you get older. The muscle that allows us to do all of our breathing is the diaphragm. But it needs assistance from those intercostal muscles, and if you have SMA, well, the intercostal muscles aren’t much help. Thus our lungs are weaker, we don’t produce as much carbon dioxide as the rest of you, and—here’s the rough part—our muscles are not strong enough to cough. It is easy to understand SMA if you only think of your legs. Your legs have muscles, SMA is bad for muscles, and thus you can’t walk. But coughing requires muscles just like walking does. If you can’t walk, that sucks, but it won’t kill you. Not being able to cough will kill you.

  When your esophagus, or your trachea, or your lungs have something inside them that’s not supposed to be there, you cough to get it out. That’s literally what coughing is. If you can’t get it out, you die. Maybe you choke. Maybe whatever’s there gets infected and spreads everywhere. (This is why for many people with SMA, pneumonia is a death sentence.) Maybe it blocks your airway, and you can’t dislodge it, and, well, that’s it right then and there. You wanna know how people with SMA often die? This is how they often die. Something gets in the way of your mouth and your lungs, and it won’t get out, and all it takes is a couple of minutes, and whoosh it’s over. One minute you’re watching a stupid game show and wondering if the host has a hairpiece, and the next minute you can’t breathe, and 120 seconds later, you get the grand question answered. There is no warning.

  This has happened to me hundreds of times, but it’s usually not a big deal. If it happens when I’m sleeping, I don’t even notice, because I’m wearing a mask when I sleep. That mask is connected to a cough assist machine, so when I inhale, it gives me some air to expand my lungs, and when I exhale, it provides a sucking force to take in anything that might be blocked in there. As long as whatever is blocking my airway isn’t completely blocking it, there’s enough back and forth in there to dislodge it so I don’t have to. You know how you’re sometimes scared when you go to sleep because it’s dark and you feel helpless? I’m actually safer in the night. I’d be just as safe if I constantly went around the world while awake with that mask on, and people do that, but I’d rather not, myself. I’m not a Stormtrooper.

  So anytime I’m out with anyone, we have a cough assist machine with us. It’s not massive: it’s just a little tank that fits under this Humvee of a wheelchair, along with a whirring battery-powered contraption that provides the sucking motion. You just put it on my face, and within forty-five seconds or so, everything gets back to normal. I just motion to Marjani, or Travis, or whoever happens to be with me, and they know to flip the switch on the machine, take out the tank, and attach the mask to my face. It’s not unusual and it’s not weird and it’s not scary. It is just another of the billion annoying little things that you don’t even think about when you have SMA. If I stop breathing for a second, you grab the mask, you put it on, you assume that’ll do the trick, you move on with your day.

  Except.

  Marjani’s face is a wall of panic. It takes me a second, but it begins to dawn on me. We were in an unusual rush to get out of the house. Marjani wanted to see Kirby. I wanted to get away from this Jonathan bullshit. I was distracted by the police visit. There was mud on the porch. There’s so much activity downtown. It’s a beautiful day. There is little in this world lovelier than Athens on a fall day, with people of every stripe and class and demeanor, the stoners and the jocks, the rednecks and the Normaltown hippies, the parents and the grandparents and the children, all in a big green field in the middle of a big green campus, all together, all away from their screens and their troubles and their fears and everything that keeps them awake at night, I believe we went over this. They’re here for Kirby, they’re here for Ai-Chin, they’re here just because it’s sunny outside. They’re all here, and it’s exciting, and life isn’t that exciting sometimes, and sometimes when it is, when something special is happening, you get in a hurry to get out and see it, to be a part of it, and you forget that every once in a while some little piece of mucus will appear out of nowhere and lodge itself in your trachea, and when that happens you need a machine to get it out, except that you were in such a rush that you left the fucking machine in the kitchen, right by the blender.

  And you realize that you have no idea where your next breath is coming from, or if it is coming at all.

  And then you are out.

  25.

  26.

  In the movies, when you wake up after some sort of accident, you open your eyes and see the face of a loved one hovering above you, calling out your name, an incantation of love and worry and devotion. You look for the light. They bring you back from the brink.

  As someone who has woken up in this situation dozens of times, I regret to inform you that it is not like that at all. First off, you never wake up lying on your back, looking directly up at the ceiling, and thank god for that: that’s how dead people lie down. Being alive, and staying alive, requires far more contortion. They’ve gotta poke you with things and turn you over and upside down and turn your leg this way and your arm that way. You’re inevitably twisted up. The first thing you see when you wake up is never someone’s face. It’s usually your own armpit, or your own ass, or the tile of the floor, or, one memorable time, a friend’s cat, looking at you, bewildered, wondering what the hell you’re doing down here.

  The strangest thing about passing out and then waking up an indeterminate amount of time later is the displacement. It takes a few minutes to answer questions that are rather basic and vital to one’s well-being and manner; again, the sort of questions you don’t think to ask in the normal day to day. Where am I? How did I get here? How long have I been lying here? Who are these people around me? What happened? Who the hell is that cat?

  This time, I wake up to my left foot about six inches from my face. I’m wearing only underwear, a Batman novelty pair I’m suddenly self-conscious about, considering I have no idea who is in the room with me right now. I make a mental note: No more Batman underwear. Disabled people have a hard enough time with people thinking we all have the mental capacity of children without them seeing me in Batman underwear. Leave me alone.

  There is some sort of beeping sound. The room has ugly fluorescent overhead lighting, bright white everywhere that makes it impossible to figure out any of the questions I have about where I am or who’s in here with me. I hear mumblings, and then a very sharp pain in my lower back, like I’ve been stuck with something. It feels like a needle, but a big one, like someone weaponized a garden hose and jabbed me in the spine with it. There’s the whirr of an air conditioner in the corner and a ceiling fan flapping above me, but it still feels about 110 degrees in here. My hair is matted with sweat, and I can feel beads dripping down my neck onto my back. There’s a little bit of blood on my right hand. It’s probably mine. (I hope it’s mine?)

  Someone has their hand over my mouth. They’re closing it and opening it, rhythmically, in regular intervals; every couple of seconds, they grasp, then release, and grasp, then release. Why are they doing this? Who is this person? And why is their hand so cold? Then I figure it out: I’ve got a mask on. This is good! A mask is good! Not having a mask was the problem! Someone found a cough assist machine, wherever I am. This means someone is helping me. This means I’m probably in a hospital, or else I’m in the most well-equipped dorm room that has ever existed at the University of Georgia.

  Anyway, I’m not dead. This is good!

  I pass back out. It takes a lot out of you to nearly die but then not actually die.

  I wake up god knows how long later, with my foot no longer in my face. There’s no cat in sight. I’m propped over on my side, with my mask still on, but I’m not sure I need it. Nothing seems blocked in my throat or in my lungs, I’m breathing easily and freely, and all to
ld, I feel wholly fantastic, like I’ve just slept for about three days. I lean my head over to the right and all sorts of joints crack, my neck yelling at me for disturbing its slumber. I open my eyes. The room is less white now. It’s just a normal hospital room like all the others.

  I’m able to take better stock of the world around me. The television is turned to ESPN with the sound off, though even with the television on mute, I still can faintly hear two middle-aged men screaming at each other. The window shades are closed, but I can tell it’s dark outside. How long have I been here? The beeping has not stopped, which means my heart is still going, I guess. The bedsheets are clean and crisp, which means something horrible must have happened on this bed earlier that they had to hide. There’s a chart on a clipboard at the end of the bed. Two visitor chairs with folded copies of Flagpole, the alternative weekly here in Athens, sit empty against the wall. (I took my online screen name from Flagpole, combining it with the old Harvey Danger song “Flagpole Sitta.” You know, because I sit all the time. I’m very clever.) There is a picture of former Georgia football coach Vince Dooley mounted in the corner, with his wide signature: “Thanks, Athens Regional, Go Dawgs!” My wheelchair isn’t in the room. Maybe they want to make sure I don’t make a run for it. Traffic honks and squeaks in the distance. It might be starting to rain. I can hear a faint moan down the hall. My knee hurts.

  I finally have my bearings. And I’m still alive.

  The door opens. Marjani. Her makeup is running. Marjani has been wearing makeup all this time. I have no idea what women have to do every day. Her hair is poking out from under her headscarf in a way that would upset her if she had any chance of noticing it.

  “Oh, Daniel,” she says, and throws herself on top of me, emotional in a way I’m not sure I enjoy. I grunt a little, and she lets up and brushes a strand of hair out of her face. “I’m sorry, I was so scared.”