I wait until Mom leaves the room before I log in to my email account—the one linked to the Facebook profile my parents know nothing about. The one I created so I could pretend to actually have a life.
About six months ago, when I was just dinking around on the Internet, I stumbled across the Facebook profile of a gorgeous twenty-one-year-old girl in Austin, Texas, who was stupid enough to not use any kind of security on her page. (Not a single, solitary one. I mean, really. Who does that?) Despite her ignorance of privacy settings, as I looked through her picture albums, I thought, I want to be her. She’s everything I’m not—tall and thin with breasts like cantaloupes and a sparkly belly button ring. She has long, black, wavy hair, shimmery, tanned olive skin, and legs that are, like, twice as long as her torso. She dates hot guys with Abercrombie & Fitch–like style and gets to travel for her job as a car show model. And then I thought, Why can’t I be her? It’s not like I’d be hurting anyone—I wouldn’t be stealing her Social Security number or the password to her bank accounts. I wouldn’t be using her airline miles or racking up charges at Victoria’s Secret on her credit card. Using her pictures on my online profiles would simply give me a chance for a little vacation from pills and blood draws and IV fluids. It would let me be something other than sick.
I quickly discovered that while I could copy some of her pictures, there was no way I’d copy her status updates, since they tended to be filled with multiple exclamation points: “TGIF!!! Bring on the boys and beer!!! LOL!!!” (I might only be fifteen, but I’m not an idiot.) Instead, I amped up “Sierra’s” (aka my) profile by liking what I hoped was a cool assortment of different pages. I kept it as close to the truth about me as possible, listing my music interests as hers (Coldplay, Fiona Apple, and Nirvana); giving her the books I adore (the Hunger Games series, Tolstoy’s Anna Karenina, and The Nanny Diaries); and liking a few trendy pages: “Bacon” and “George Takei.” I changed the girl’s name (from Tiffani Myers to Sierra Stone), college (from none to WSU), and career (from model to aspiring graphic artist), then copied Tiffani’s profile picture and other snapshots from her albums, making backup files on my hard drive so I could use the images as my avatar in the chat rooms I liked to visit and the games I liked to play online. (I had to restrain myself from sending Tiffani what I thought would be a helpful, anonymous message: “You do realize the Internet is forever, right? That pic of you lying across the BMW in a red bikini, men lined up take body shots off you? Your grandchildren are going to see that.”) I accepted friend requests from anyone who wasn’t already friends with Tiffani, amazed by the number of random strangers who “Sierra” was suddenly “friends” with simply because of the way she looked.
Now, as I lie in my hospital bed with zero emails in Sierra’s inbox, I toy briefly with the idea of creating a profile as my actual self: a fifteen-year-old girl with a diseased liver, an emotionally distant father, and a sweet but overprotective mother. A girl who doesn’t have any friends. Who has never gone to a school dance or had a boy try to kiss her. A girl who, if she doesn’t get a transplant, is going to die.
I dig my fingernails into my palms and gulp hard, fighting back the tears. Most of the time, I’m able to keep the reality of my situation shoved into a corner of my mind. I can see it, I know the truth, but I can dance past it when I want, pretending to be Sierra instead of Maddie, hovering above what feels like an impending doom. Being in the hospital makes it impossible to ignore. I sleep most of the time, I can’t eat, and the looks on Dr. Steele’s and my mother’s faces tell me that things aren’t getting any better—they’re getting worse.
When I first got sick, I didn’t really understand what it meant. I knew I didn’t feel good—I was tired all of the time and I didn’t want to eat. I was six when I was diagnosed with celiac disease, which meant I couldn’t ingest anything with any sort of gluten in it. When I did, I’d ache all over and get incredibly nauseous. A year later, it became worse. After a couple of weeks of thinking my symptoms were due to my secret stash of my dad’s beloved multigrain bread, Mom took me to the pediatrician, who, while pushing gently on my abdominal area, discovered my liver was enlarged. Several blood tests and specialist visits later, my problem had a name: type 2 hepatitis, which, apparently, adolescent girls who already have some kind of autoimmune disorder like celiac are more likely to contract. It’s rare, but it happens. Lucky me.
“It’s treatable,” Dr. Steele told us. He prescribed an initially high dose of prednisone, then gradually tapered the amount down to try and keep my immune system in check. The meds worked, at first. I was able to stay in school, though I couldn’t run as hard or fast as the other kids in my class. And then one morning, in third grade, I woke up writhing and sweating in my bed. “I can’t get up, Mama,” I cried. “Help me!” I remember the fear, the agonizing ache in my bones. I remember vomiting so hard I saw streams of blood in the toilet. I remember my throat swelling and feeling like I couldn’t breathe. I was in the hospital that night, and didn’t leave for several weeks.
“Esophageal inflammation,” Dr. Steele explained to my parents when he met us in the emergency room. “When the circulation in Maddie’s body gets blocked because of scar tissue on her liver, blood can back up into other vessels. Mostly in her stomach and esophagus, which I think is what’s happening now.”
“And how do you propose to fix it?” Dad asked, holding on to the metal rail of my bed until his thick knuckles went white. I’d always hated my father’s hands: they gripped too tightly, slammed too many doors.
“We’ll try adding another course of anti-inflammatories and upping the prednisone. If that doesn’t work, we may have to consider surgically inserting a shunt, to drain the fluid from her liver,” Dr. Steele said, then looked over to me. “You’ll have to stay here awhile, Maddie, so we can get you better. I promise, we’ll take excellent care of you.”
“I want her moved to a private suite as soon as possible,” Dad said.
“Please,” my mom quietly added to his demand, and Dad grabbed her hand hard enough that she flinched. He shot Dr. Steele a charming smile. “I apologize. It’s just . . . Maddie is my little girl. I only want the best for her. You understand.”
Dr. Steele nodded slowly, then tweaked my nose. “I’ll see you after your ultrasound, missy. Can I bring you a Popsicle from the cafeteria?” I bobbed my head yes, because at eight years old, I still thought Popsicles made everything better.
Seven years and countless hospital stays later, I detest Popsicles. I’ve also managed to build up a tolerance to the drugs that are supposed to suppress what Dr. Steele calls my “hyperimmune response,” so they aren’t working anymore. They make me fat and bloated and still my stupid immune system thinks my liver is its enemy and keeps trying to kill it. And the unfortunate side effect of that is killing me. Unless I get a transplant. Unless some other person with the right blood type dies and saves my life.
I try to distract myself from these depressing thoughts with a quick review of Tiffani’s profile, scanning for material I might be able to snag for Sierra. I note that she’s taking a trip to England for a car show next week, so I know there’ll be new pictures to use. I cringe, imagining Tiffani’s Facebook posts as she travels: “OMG!! Big Ben!!” and “I ordered chips and got French fries. LMAO, y’all!!”
My mom reenters the room just as I close the browser and lock the screen. She doesn’t know much about computers past being able to email and surf the Web, but I password-protect mine, just to be safe. “Your dad sends his love,” she says.
“Awesome. Why be here when he can just ‘send his love’?”
Mom frowns at my sarcasm. “Maddie—”
“What?” I snap, closing my laptop. I get so tired of her pretending that Dad is such a great guy. I know she’s trying to protect me. I know she hopes I don’t notice what goes on in our house, but I’d have to be a moron not to. I’d have to be Tiffani.
Suddenly, the weight of overwhelming fatigue clamps down on my body. My heartbeat thuds inside my skull, chipping away at my consciousness, and I have to close my eyes. It hits me like this sometimes. I’ll be feeling almost normal (well, normal for me, at least, which Dr. Steele says is probably how most people feel when they have a seriously bad case of food poisoning), and out of nowhere, I think, Okay, this is it. These are my last breaths. I try to have meaningful thoughts, to wish for world peace and the end to childhood famine and Miss America-y things like that, but usually, like now, I think about how I wish I could have a bowlful of chocolate gelato just one more time. I wish I could lie on the beach and get a sunburn, listening to the waves crash against the shore. I wish I wasn’t going to die a virgin.
Mom rushes over to my bed. “Are you okay?” she asks, placing a cool hand against my forehead. I know I have a fever—my skin crackles beneath her touch. In the last year, there has only been a total of about a week that I haven’t had a fever.
“I’m in a hospital, Mom,” I say with a weak smile. “So, no. Not so much okay.” I force my eyes open. “Thanks for asking, though.”
“Sassy.” Mom shakes her head, but smiles, too.
I pat the top of her hand. “These stupid pain meds are making me dizzy. I feel like shit.” Mom is quiet, worried lines etched in deep parentheses around her mouth. I jiggle her arm gently. “What, no ‘watch your language’? I must really be going to die this time.”
Seeing the look of horror that takes over her face, I want to reel the words back the second they tumble out of my mouth. “Madelyn Bell,” Mom says. Tears gloss her pretty hazel eyes. “Don’t you talk like that.”
“Sorry,” I say, with a guilty shrug. She hates it when I joke about death, but for me, it’s the easiest way to deal. Plus, the way I figure it, if I’m happy and laughing, I can’t die. God would have to be a total asshole to strike me down in the middle of a giggle.
Mom looks like she’s going to say something, but then Dr. Steele rushes into the room, practically tripping over his long legs. I consider briefly that he and Tiffani, with their superextended, alienlike limbs, might make an excellent couple.
“We got it!” he says, and my mother starts to cry. I must look confused, because then he says, “She hasn’t told you?”
I throw my gaze back and forth between them. “Told me what?”
He smiles, a wide motion that shows his gums, top and bottom, and his big Chiclet teeth. “We need to get you prepped for surgery,” he says. “This is it, kiddo. Your whole world is about to change.”
