How Lucky Read online

  Thank you. Am I OK?

  Yes. We got you here in time.

  Are you OK?

  [A silent, sad nod. She wipes her eyes.]

  How did I get here?

  “There was a police officer,” she says. “She saw me panicking because I couldn’t get you unblocked, and you were starting to turn blue, and she ran over to you and started giving you mouth to mouth.” I chuckle. Everyone always wants to do this. It doesn’t help, but it does make them look heroic.

  “After I got her off you, a man picked you up and carried you out of the park,” Marjani says. “That nice woman Rebecca had her car nearby, and we drove here immediately. Someone called nine-one-one, but we did not have time to wait. We got you in the building and they put the mask on you immediately. But we were very frightened. It looked like you had barely been breathing for a considerable amount of time.”

  I look down at my body. It is cut and scraped and bloodied, from my ankle all the way up to my thigh, on both legs. I raise a Groucho to Marjani.

  She begins to cry. “The man did drop you at first,” she says, and she puts her head in her hands. She feels terrible about this, but she shouldn’t: the idea of a Good Samaritan attempting to help what he sees as this poor cripple who can’t breathe but then bouncing me off the pavement the minute he picked me up is objectively hilarious. Did everybody gasp? Did they think he was trying to body-slam me? It’s like an absurdist sketch. I’m here to help! To the rescue! But first: We must dribble him like a basketball! My chest starts heaving up and down, and Marjani leaps to attention before she realizes I am laughing. She smiles, and I suspect it’s the first time she’s smiled in several hours.

  I don’t know if I’ve ever seen Marjani so worried.

  The door opens again. Kramer comes bounding into the room, studio audience applause, look, everybody, it’s our wacky friend Travis from across the hall. He has a policeman with him. It’s our old friend Officer Wynn Anderson.

  “Dude, what the hell,” Travis says. “No wonder I couldn’t find you at that rally, see.” He looks me over. “Did you pick a fight with a wolverine?” He lays his hand on my head gently and puts the straw in a glass of water in my mouth. He whistles lightly. “This shit never freaks me out any less.”

  I look at Detective Anderson. Our eyes meet in recognition. He is trying to keep his composure, and failing. I give him a wink.

  I notice there’s a woman behind him. She doesn’t seem to mind that the rest of the room has completely forgotten she is there. “Hi, I’m Jennifer,” she says. “We met at the rally.” I remember. She was nice. “Wow, are you OK?”

  Unlike nearly every other person who sees me in this state, she’s not talking to me as if I am a three-year-old, or staring past me like a tree stump. She’s looking right in my eyes. I like this girl already, and I feel like everything is going to be just fine.

  Detective Anderson speaks up. “Listen, Daniel, I just wanted to make sure you were all right, but Travis has been telling me some rather pertinent information that I was, uh, unable to procure during our visit yesterday.” He is still a massive man, but when he is unsure of himself, he is back to being a boy wearing a police officer’s costume that is too big for him. “When you are, um, better, well, adjusted, I will come by and we can file a report.”

  When I nod at him, he looks away. I notice an Atlanta Falcons tattoo on his left biceps. He is eleven years old.

  I look at Marjani.

  Can I get out of here?

  “There’s a doctor coming to check on you, but yes, I think they’re going to let you go. They got the mucus out of your throat, and everything else is checked out. They even did a . . . Oh my, what happened here?” She rolls me over, and we realize that there is a small pool of blood in the bed, right where my lower back just was.

  “Oh, shit,” Travis says. “Check this out. It’s a nail.” It is a nail. There is a tiny nail in the bed. That would be the garden hose I felt earlier. How the hell did that get there? Why is there a nail in my bed?

  Jennifer chuckles. “Of all the possibilities, you’re gonna die of lockjaw,” she says. Like I said, I like this girl.

  27.

  So the question you’re asking yourself is: Why am I not dead? While the occurrence of something blocking my airway is a fairly common one, not having the tank and the suction mask there to clear it is not. If that mucus was in there, and I couldn’t get it out, and it blocked my airway for longer than, say, two minutes, . . . why am I not dead?

  In the back of Travis’s truck, Marjani attempts to explain it to me.

  Of all the reasons to love Travis, the fact that he has custom-fitted his F-150 truck so I can ride in the cargo bed is maybe the best one. A couple of weeks after I moved out here, he and his mom went out to a body shop and asked them if they could construct some sort of contraption for me to lock my chair into. The mechanic, an older, burly goateed man named Bryan who said he had a son with cystic fibrosis, accepted the challenge and built, somehow, a four-tiered system to let me ride along in the back of the truck. We call it the Woolly Mammoth. The tiers:

  1. ELEVATION. You have to get me and my chair in the thing. Bryan built a mini conveyor that carries me to the front of the bed of the truck and locks me into a seat, with my head facing away from Travis’s back window out onto the street. I like to give a thumbs-up, when I can, to the people behind us in traffic. They go nuts.

  2. ENCLOSURE. The chair clicks in and then has lock bars on each wheel that clang into place to make sure I don’t go rolling off the back of the truck every time Travis accelerates.

  3. BUCKLAGE. Bryan put in industrial-strength seat and chest belts that he procured from an Air Force friend who stripped them out of an old fighter jet. This absolutely fucking rules just as much as it sounds like it does. You can ride my tail anytime, Maverick.

  4. COPILOT. There’s another chair for my caregiver, right next to mine, with straps and belts and lock bars of its own.

  When we ride in it, Marjani and I end up looking like the king and queen of the most redneck Fourth of July parade you’ve ever seen, just two goofs ridin’ off the back of a truck. This contraption is entirely safe, but not entirely legal. The visual is so striking and people love it so much that every cop who has ever seen it just asks where we had it done, though. I wouldn’t recommend taking me off-roading, and it’s probably best to avoid freeways and interstates, but driving around downtown Athens, we cut quite a figure.

  As for me, I get to have the wind whipping around my head at forty miles an hour with the sun on my face.

  For what it’s worth, Marjani hates the Mammoth, and she particularly hates trying to talk to me in the Mammoth, and she particularly hates trying to talk to me in the Mammoth when she has been crying because she feels guilty because she thinks she may have just almost killed me.

  “You were not entirely blocked!” she yells, trying to be heard over the engine and the wind and all the rustle of a game-day Thursday night in Athens on Broad Street. I lean toward her, trying to make my eyebrows ask a follow-up question, but they’re all tearstained and runny right now anyway. It is difficult to communicate with Marjani in the back of the Woolly Mammoth, but it’s worth it because we’re outside and it’s nice out and the wind is making my hair stand up everywhere and I just almost died.

  “It was just a small piece! It was blocking you for a second, and that’s why you couldn’t breathe, and that’s why you passed out!” We’re at a stoplight. She pauses to catch some air and wipe her eyes. Marjani has had a long day. “While you were out, and we were all running around, part of the plug must have dislodged and cleared out. That’s what let you breathe again. Ooooomph!” Travis hit the gas a little too hard. He always accelerates faster than he needs to at a green light, mostly because he knows I like it and Marjani hates it. She really despises the Woolly Mammoth.

  She pounds the window. “Travis! Stop that!” I can hear him laughing through the wind. Jennifer, still sitting next to him ev
en though she just met him about two days ago and has spent most of that time commiserating about a missing girl and helping his disabled friend with the disease she surely still doesn’t entirely understand, laughs along with him. What a second date.

  Marjani composes herself and continues. “So you just were lucky. This is what I feel so terrible about, Daniel. The only reason we did not lose you today is because a chunk of that mucus broke off. That is pure luck.”

  I look at her.

  Gimme a second, I have a joke.

  This is not a laughing matter, Daniel.

  Just hang on, will ya?

  I furiously tap my phone to activate my voice box. I screw up and have to start over. She taps her foot.

  I do not feel like laughing right now, and I do not understand why you would want to, either.

  Dammit, Marjani, just hang on a second.

  I have no idea why that piece fell off.

  Got it. My speaker booms.

  “It. Fell. Off. Because. That. Guy. Dropped. Me.”

  Marjani smiles, wanly, so exhausted, not ready to be chuckling about this but relieved that I am. “I am just glad you are OK. But my mistake is unacceptable.” She stops. “Unacceptable. I could have killed you, Daniel. I was in a hurry, and I am doing too much, and there is so much activity, and I ran off without your tank. I cannot believe that I did that. It is unacceptable.”

  I meet her eyes again.

  Stop. It happens. I forgot too.

  It is my job to protect you.

  No. It is your job to be here for me. And you were. You are. You are here right now.

  I look over to my left.

  And we are home. I am safe. You are safe. We are lucky. Let’s go home.

  The Woolly Mammoth rumbles to a stop, and Travis and Jennifer hop out of the truck and drop the cab door down. She jumps into the bed of the truck and unstraps me and unhooks the chair like an old pro. I look up at her quizzically. “Well you can’t sit there all day,” she says.

  Marjani remains behind, still quiet, still looking down. I grunt toward her, trying to get her up, to get her going. This isn’t her fault. I’m a guy with a disease that eventually kills everybody who has it, and eventually it’s going to kill me. I am glad it wasn’t today. I hope it’s not for a long, long time. But let’s not kid ourselves. It’s going to happen, and when it happens, I don’t want Marjani or Travis or my mom or this Jennifer person who is suddenly the matriarch of this weird little family to be kicking themselves up and down over it.

  I can’t have Marjani doing this. I can’t have anyone doing this. Today was scary. But they’re all scary. We can’t fret around the planet waiting for something to kill us, or worried something’s going to kill someone we love. I’m not going to stare off into the void waiting for it all to end. I sure as hell am not going to let her do that either. I demand better company than that.

  Before I can grunt again, Jennifer, without warning, bonks Marjani on the nose with a rolled-up pamphlet, like a dog who peed on the rug again, with a cartoon “Boop.” This woman. Has she even met Marjani?

  “Out of the truck, lady,” she says. “Colbert’s on in twenty minutes.”

  Marjani, formidable, terrifying, weary, wonderful, looks at her, this strange woman who came out of nowhere and started acting like she owns the place. She stares at her for a beat, another beat, far too long. I see Jennifer’s back tense up.

  Then Marjani pulls her hand into her sleeve, raises her arm, and lightly taps Jennifer on the nose.

  “Boop.”

  I try to laugh but can’t. The moment of levity, and my slight gasp in response, appears to snap Marjani back into attention. As soon as we’re in the front door, she commences cleaning the place, straightening up, returning to default mode. She’s begun to sweep up the kitchen when she stops suddenly.

  “What in the world?” she says. “There is mud everywhere.”

  There is. The entire kitchen floor is caked with wet, sloppy mud. Not dried mud, either, but fresh mud, with glops of rainwater dripping across the floor and a pungent, humid smell that feels . . . recent. Marjani turns to Travis to yell at him, but he took his shoes off when he walked in. Jennifer’s shoes are right next to his. This mess is new. And it is not ours.

  I look up at Marjani.

  Was one of the orderlies here?

  They are not usually here so early. And they are never so rude.

  This is gross. What is this?

  I do not know. Who has been in this room?

  Marjani.

  Yes?

  I am very tired.

  “Of course you are, of course you are, I am sorry,” she says. She wheels me into my bedroom and has started to unbutton my shirt when my phone starts whirring and braying at me. FaceTime is ringing. A smiling, tanned face looks back at me. She had that picture taken in Barbados last year. She was with some guy. Frank? Carl?

  Oh. Mom. There is so much happening.

  28.

  Yes, yes, I can get him on the FaceTime. Hang on one moment, Angela.”

  We’re back home, and I’m tired, and everybody’s tired, and man, what a day, but once she heard about all that went down today, I can hardly blame Mom wanting to check in.

  It occurs to me that I have no idea where my mother is right now. When I talk to Mom, I sit in my chair and look at the computer screen so she can see me through FaceTime and then talk with her through Gchat. I don’t entirely understand why this is satisfying for her, considering all she’s watching me do is move my joystick in response to whatever she is saying, but I guess she likes to see me, crammed into my chair and all dolled up in my pajamas like a six-year-old. (I hate these pajamas.) Plus, it’s an hour earlier in Illinois, so maybe she’s not as drained as the rest of us.

  She’s not at her house now, anyway. I feel like I see a pool behind her. A beach? There’s a shadowy figure moving in and out of the background, a male figure, some sort of droning noise, maybe drying his hair or something, I can’t really tell. Who is that guy? Where is she?

  “You look awful.”

  ( . . . )

  ( . . . )

  ( . . . )

  Thank you. That’s very nice, Mom.

  “Marjani told me about all of it. Don’t blame her for what happened. That used to happen to me too. I know it should be easy to remember that tank, but it just isn’t. I tried to keep it in the chair all the time so I didn’t have to think about it.”

  ( . . . )

  ( . . . )

  ( . . . )

  I do not blame her. Where are you?

  “I’m in Jamaica! I’m at a resort here with a . . . friend of mine. From work! School hasn’t gotten back from break yet, so I wanted to sneak in one last trip before all the students return.”

  I am curious who that “friend from work” in the background is, but again, it has been a long day. She can tell me later if she wants to.

  ( . . . )

  ( . . . )

  ( . . . )

  I hope you are having a good day. I am very tired, Mom.

  “I understand, I understand! I just wanted to check in on you. It has been a while since you had one of those.”

  She looks worried, but unflustered. I’m sure Marjani minimized the seriousness of what happened, and it’s not like she can really tell much over FaceTime anyway. She seems . . . light and silly. I am happy for her. And I am not going to break her reverie.

  She begins to giggle at something she sees just off-screen, and now I am no longer curious and do not want to know any more. “Stop, stop!” she says to whoever, some hulking dude probably dripping with coconut oil, in a Speedo, balancing some sort of fruit on his genitals, who knows, good for her, I guess. “Stop it! I’m talking to my son, sheesh!”

  She brushes some hair out of her face, pulls it back in a ponytail, and puts on a hat. “Well, we’re off to go play some tennis,” she says, and suddenly I’m really confused about Jamaica’s time zone. “Tell Marjani to keep me updated on anything that�
�s happening over there. I’m just glad you are OK.” She wags a finger at the screen. “Don’t forget that tank.”

  ( . . . )

  ( . . . )

  ( . . . )

  I won’t.

  I pause.

  ( . . . )

  I’m putting on a brave front here, and I want her to have a good time, but . . .

  ( . . . )

  . . . I dunno, I guess I am a little shaken up by today? I can’t get my heart to slow down tonight. I can’t get myself straight.

  ( . . . )

  Why, I wonder? Is it just that it has been a while since something this scary went down? Maybe it’s just a matter of getting older. I’m in my mid-twenties, which is the prime of life for all of you but creaky old age for someone with SMA.

  ( . . . )

  All those other kids I grew up with who had SMA? A large percentage of them are dead now. There’s a friend back in Illinois who is hanging in, but he’s bedridden full time, living on his parents’ farm, never leaving the house, idling, whittling away the days until there aren’t any left. There’s a girl I met up with a couple of times in Atlanta who is in better shape than I am, and she even has a boyfriend. (She told me she once broke her hip while they were making out, though that was a few years ago.) But otherwise: Not a lot of us still kicking around. The kids growing up today with SMA, they’re gonna be able to last longer. They’ll have been on Spinraza since they were babies, working up their strength. If I had been born two decades later, I would have had a better chance to make it into my forties, my fifties, even my sixties.

  ( . . . )

  But I’d be kidding myself if I didn’t admit I do feel a little weaker every day. I recover more slowly. The little aches and pains linger more than they used to. Getting out of bed irritates me. I have always taken pride in my desire to meet the morning, to meet life, with vigor and enthusiasm and an appreciation of the world I’m so lucky to get to embrace. But I can feel myself getting more tired.

  ( . . . )

  I want to tell you this, Mom. I just feel so fragile sometimes, you know? You raised me not to feel that way. I have never felt that way. I have worked to make sure I did not feel that way. But I do. I feel fragile. I feel weak. I feel in danger.