It was a beautiful day in North Dakota. The sun was shining, the birds were singing, and I had just puked all over myself. Again.
You’d think that after fifteen years of living with chronic illness, I’d be used to my body. But no, cystic fibrosis has a mind of its own. The worst thing? As I lay in bed, my stupid bag IV bag was blocking the view of my gymnastics medals and trophies. Not that I stood any shot of making the team this year. Freshman year I was considered a protégée; this year I’m the freak who fell asleep in the locker room. That’s CF— one minute I feel superhuman (or at least human), but the next minute I feel so tired I can barely run through my routines. Then we have today.
I’m fairly certain I’m not going to survive long enough to compete for a spot on the competition roster.
My head pounded as the sunlight hit my eyes. “Sara, I need you!”
Like magic, Sara was already pulling the blankets off my body. “I’m here Sean, I’m here,” she said as she loaded my blankets into a laundry bag. “I think we need to get you to the hospital.”
“No, please. Just give me a few more days on the IV.”
“Sean, it’s been over a week. Your fever has only gotten worse.”
I began to cry, sobbing into my pillow. All I ever wanted was to feel normal in my own skin. Because being normal comes with happiness, right? I wanted to fall in love, I wanted to get married, maybe even have a family. I kicked my IV just enough to see my trophies: evidence of the alternate reality version of myself. There was a photo of me in freshman year, on the rings. Even with my long hair whipping all over my face, I nailed my gymnastics routine like a rock star. I was the youngest person to ever win an individual gold at the state level. I wiped tears from my eyes as Sara handed me a clean shirt.
Who am I kidding? I’m going to die alone in a hospital bed.
“Don’t cry.” Sara kissed my cheek. “You know, with how light your eyes are, you look like an ice-zombie.”
“What?” I instantly perked up. Sara always knew how to make me smile. “Once we get to the hospital, I want to braid your fairy-princess hair.”
I laughed. For the record, I do not have fairy-princess hair. I have surfer hair, long blonde waves that cascade down my back. Hair destined for a dive into the Pacific Ocean. Sometimes when I’m in the shower I’ll stand under the flow, letting the water wash over my face. In my mind I’m in California, emerging from beneath the waves.
I look nothing like Sara, my remarkable sister. I like to call her my twin since we’re the same age—not that we have anything in common, beyond sharing a room. I’m six-foot tall, which doesn’t help much when your sport of choice is gymnastics. I have my meds to thank for that; for the first fourteen years of my life I was prescribed human growth hormones to give my sick body a fighting chance. While my adorable, amazing sister was a brilliant science nerd, destined to change the world.
I was snapped back to reality by a coughing fit. I could feel the mucus trying to come out, but my lungs were seizing up. I reached for my inhaler. The medicine helped relax my lungs enough to take in air, but now the room was spinning. “Sara, I don’t think I can make it out of bed.”
Sara was already gone. She quickly returned with our mother, who lifted me out of bed and helped me to the door. “Sara, disconnect his IV, make note of how much is left in the bag, and then I need you to grab my keys and start the car.”
I kind of passed out just as we got going, but at least I was lying with my head in Sara’s lap. That was about as comfortable as I was going to get. She was cradling my head in her arms. Although small, my sister was always my hero. She could do it all: administer IVs; monitor my blood sugar; and even perform chest physiotherapy to loosen the mucus in my lungs. Mom was brave, too. She always had been, from the day she’d chosen to adopt an abandoned baby with CF. Then having to raise us on her own when Dad died on a disaster relief trip to the Philippines. I could feel Sara stroking my face. I looked up to see tears in her eyes. With fifteen years of caring for me, my illness affected her as much as it affected me. I tried to cheer her up. “So, are you going to braid my fairy-princess hair?”
She gave me a weak grin. “Let’s hold off on that until you get a bed.”
Less than an hour later, I was admitted to the ICU. I couldn’t stop coughing. The port on my side was reopened in an attempt to drain my lungs manually. I had to be put on oxygen and blood thinners to relieve the pressure in my chest. I’m told that the fever spiked into brain damage territory. My antibiotic levels were adjusted: different amounts, different combinations. The nurse brought in a blanket that appeared to be made of hundreds of cold packs fused together.
On the third night in the ICU, the dreaded words “breathing tube” were mentioned. I hated breathing tubes. They were unbearably painful and made it impossible to speak. I grabbed Mom’s hand. “Please, I can fight this. You know I can. I just need you to believe in me.”
I wanted so badly to get out of bed. I wanted to get back to training, to feel the burn of strength in my muscles. To feel my body pushing itself towards greatness, not just to survive. Hell, freshman year I trained and competed with a fractured wrist and three bruised ribs after getting the living crap kicked out of me. That was how bad-ass I could be when CF wasn’t hijacking my body.
Mom turned to the doctor. “What are the other options?”
The tall, elderly man looked confused. “I strongly recommend a breathing tube, just until we can get the fever stabilized.”
That was the easy answer for him; put the kid on a breathing tube and come back to him later. And I sure as fuck did not want to be tethered to a machine. The way I figured it, the fewer machines I was reliant on, the faster I was going to recover. I wanted to get back to training or I wanted to die. I had little use for the gray area in between.
Mom shook her head vigorously. “No. Put him under sedation. It’ll give his body a chance to rest.”
“With all due respect, Mrs. Foster—” “You listen to me—that boy is more than numbers on a chart.”
“I know this is difficult—”
“He’s my son!” She squeezed my hand. Sara was already holding my other hand. “Sean’s on full oxygen and he’s still breathing on his own. I’m choosing to have faith in him.”
The doctor quietly left the room.
Mother kissed my forehead. “I love you. And I’ll always believe in you.”
The next day, the fever went down to a better, yet still unsafe level. I suffered a seizure due to lack of oxygen to my brain, prompting the doc’s insistence on a breathing tube. That, or a tracheotomy. I was strong, but would not survive the ordeal unscarred.
Mother looked to Sara.
“Tracheotomy,” Sara quickly answered.
The doctor would be cutting a hole in my throat, inserting a tube that would attach to a ventilator and function as an alternative means of supplying oxygen to my weakened lungs. The process would be much more invasive and painful, but at least I would still be able to speak.
By my eighth day in the hospital, I was too weak to remain conscious for more than few hours a day. My lungs were failing and if the infection spread to my heart, I could very well be dead in a few months. I stared at the ceiling, trying not to think about the ache in my throat or the pounding in my head. I seemed a little dead from the neck down. A soft snore made me look to Sara. She was slumped in the seat by my bed with a book resting on her lap. I couldn’t make out the title, but it looked science-y and intimidating. She’d been with me all week, having been given permission by her school to study at the hospital.
It seemed to take minutes of effort to coordinate my arm muscles, but I managed to reach over and nudge her awake. “Go to school tomorrow, please.”
“Why?” she whispered. “I want stay with you. I want to be by your side when you get out of this bed. That’s the way it’s always been!”
“Go to school,” I repeated. I knew what she meant. Whenever I was hospitalized, she was always by my side. “It’s not worth it for you to stay.” I didn’t dare look in her direction.
She gripped my hand. “I have nothing to look forward to at school. You’re all I have.” I sighed. Sadly, she was probably correct. Her vigilance in caring for me didn’t exactly do much for her social life. “Maybe a miracle will be waiting,” I said as I yanked my hand away, a little ruder then I should have.
“Or maybe you’ll die in your sleep.” Sara took a deep breath, shook her head, and left the room.
The next day, Sara didn’t show up at nine as usual, which was good— it meant she’d probably gone to school. Playing hooky was like sacrilege to her. Some part of me saw this as God throwing me a life line. A little after five she scampered in, taking a seat on the plastic chair by my bed. “Sean, are you awake?”
“Is that my miracle?” I asked motioning my head to the doorway, which framed a tall, supermodel-like silhouette.
Sarah turned my room lights on for me. I squinted, but then couldn’t stop staring as the girl walked towards the bed. The stunningly beautiful Latina wore her hair in a pixie cut with bangs sweeping over her eyes. She lovingly caressed my hand.
“Hello, Jenny-Q.” Even with her new look, I would recognize her beauty anywhere. Up close I could see her caramel skin, high cheekbones, pouty lips and large brown eyes that sparkled with hints of gold.
“Hey, Sean,” she whispered. “Sorry, I’m so nervous. I didn’t even know if you’d remember me. I have no idea what to say. I know if my dad was here, he’d try to get us to pray, or some shit like that.”
“Remember you? You saved my life. I don’t know what I was thinking, that day. I should’ve run.”
“No shit,” Sara muttered. She still hadn’t really forgiven me for talking back to Richie Cross like I was on some kind of suicide mission.
“I knew what to expect, after my run-in with Lisa,” I admitted, not meeting Sara’s eyes. “Richie wasn’t about to let me get away with screwing around with his girl. It had to be me coming on to her, because Lisa would never cheat on him, no.”
“Why I thought I’d get on better with that douchebag than Lisa had, I’ll never know.” Jen rolled her eyes. “I still can’t believe he called you an ass-cancer.”
“Yeah, well. I shouldn’t have told him I had cancer. It just seemed easier than explaining Cystic Fibrosis to a dumbfuck.”
Sarah folded her arms. “I get that, but you didn’t do yourself any favors with your comeback.” She glared at Jen, who was giggling.
I’d told Richie that I’d rather be an ass-cancer than the only black guy at White Creek with a micro-penis, and then came the beat-down. I remembered the ‘fight’ clear as day. I’d lifted my chin, daring Richie and his gang of dickwads to attack. In the moment, I honestly felt like I could take whatever they had to give, but the blows came too fast and too hard. I could hear people laughing, even cheering. My efforts to shield my face were proving pointless as my attackers dragged my body away from the lockers and started stomping my head. It was when I’d started to succumb to the pain that I heard screams and voices coming to my defense. One by one, the attackers stepped off, but before I could start to feel the relief, Richie grabbed me by the hair and blew cigarette smoke directly into my blood-covered face. It was Jenny-Q who’d rummaged in my bag and helped me with my inhaler, preventing a choking spiral that would’ve ended me in minutes. But it got her slapped hard. Through eyes which were rapidly swelling shut, I saw Richie hauling her down the hallway by her arm, railing at her about her lack of respect.
“Yo! Earth to Sean!” Sara said, shaking my arm. “Were you sleeping with your eyes open?”
“Sorry.” I smiled at Jenny, still feeling guilty that I couldn’t do a damn thing about what Richie did to her after she’d defended me. “I never forgot your courage, Jenny-Q. Hell, I didn’t even get to thank you. Where did you go?”
She shrugged. “I took a little ‘hiatus’ from school. Anyway, like I told Sara, Jenny-Q was a slut with super-short shorts and over-processed ringlets. Now I’m just Jen.”
“I like the pixie cut,” I told her. “New era, new image, right?”
“Yeah, that, and also I used so much hair product that I gave myself a scalp infection.” Covering her embarrassment, she grabbed the bed controls and took it upon herself to move my body to an upright position. Her fingers brushed a lock of hair from my face, tucking it behind my ear. “I just want to see those beautiful eyes.”
I held her gaze for a long moment, trying to figure out her body language. It seemed like she was being more than gentle—I felt a little like she was hitting on me.
Sara glanced back from the muted TV. She’d been surfing the channels. “Jen knows all the cool hospital tricks, like how to get non-family into the ICU.”
I grinned. “How come?”
“Her brother died of cancer.” I flinched at my sister’s total lack of tact and looked into Jen’s beautiful eyes. “Oh, God, I’m so sorry.”
“Yeah, Cam died of liver cancer when he was eighteen, and I was eleven. Neither of my parents were viable donors.” She looked at the ceiling as if looking to God. “I was conceived on the off-chance I could save him. Cam developed tumors in his liver when he was two years old. All my parents’ time and energy was put into giving him a little… longer.”
Sara blinked. “Wow, that’s kind of harsh. I know my mom loves Sean more than me, but—”
“Sara, that’s not true,” I snapped. I hoped she was being sarcastic, but wasn’t sure. Things had been a little ropey between her and Mom for a while.
Jen raised her hand. “The point is, Sara, you love him too. It was the same for me and Cam. There’s a story he used to tell me about the day I was born. I was passed off to my grandma because my parents needed to check on Cam in the ICU. Grandma thought it was inappropriate for a new mother to be away from her baby, so she took it upon herself to bring me to the ICU and put me into Cam’s arms. He told me that in that moment he felt like a superhero because he had someone to watch over, someone to love.”
“Yeah, I’ll bet.” I could only imagine what that felt like, to be suddenly given the chance to be someone’s hero. Part of me wondered, at what point in his short life Cam realized that Jen was born only to serve as spare parts. To me, that would be the most heartbreaking aspect. To know that not only were you destined to die, you couldn’t protect the one person you cared about most.
Jen’s voice was breaking. “When my mom tried to take the baby away, Cam cried. He was the only person who ever loved me. The day he died, I wanted to die too.”
I cupped her face in my hands, looking into her eyes. “You’re too beautiful to cry.”
Sara giggled. “You two are so cute together, like something out of a magazine.”
Jen stuck out her tongue. “Teen Vogue or Hustler?”
“Vanity Fair, at least their gorgeous supermodels keep their clothes on.”
“I can roll with that, but I’ll never be a model.”
Sara rolled her eyes. “I don’t do false modesty.”
“No, really…” Jen lifted her shirt slightly, revealing a large scar on her otherwise perfect abs. “A chunk of my eight-year-old liver bought my brother a few more years.”
I stared. “Wow. That’s quite the war wound.”
“It’s a permanent reminder of how I failed him.”
“You didn’t fail him,” Sara said. “Medical science failed him. That, and not enough people walking marathons while wearing colorful ribbons.”
Jen covered her mouth as she laughed. “You are so bad, Sara.”
I put my arm around Jen, pulling her close. “Can I touch your scar?”
“Yeah, I guess.” I slid my hand over her abs, feeling the raised tissue. She released a soft sigh. Taking courage, I moved her hand towards my drainage port, but her hand recoiled.
She smiled too brightly and pulled back, pulling her shirt down. “Anyway! I know how to hook up a gaming system to a crappy wall-mounted TV in Iowa, how to sneak a refill of ice chips from the unlocked faculty break room in Nebraska, how to smuggle in outside food in New Mexico, and—most importantly—how to do most of the nurse’s job.”
“And pushing the little red button is a fifty-fifty shot at best, am I right? Nurse call button, my ass.”
I forced myself to laugh at Jen’s joke. It was so cool that she hated hospitals just as much as I did, but I was still stung from misreading her. She got up and headed for the door, all smiles, but seeming like she needed to get out quickly. I slumped in bed, really needing her to give me a second chance. “Hey, do you need to go already?”
Jen smiled. “Probably best if I do right now. I’ll be back. I promise.”