From The Power of Two by Isabel Stenzel Brynes and Anabel Stenzel
This chapter, “A Day in the Life,” was written by Ana about the twins’ routine at Stanford at the beginning of 1991. Their close friend Karen Godrey Bell, whom the Stenzel sisters had grown up with at annual summer camp for children with CF, died after a precipitous decline in December of the twins’ freshman year. Both sisters had been hospitalized during the holiday break with illness that had been compounded by grief.
My next quarter at Stanford began with another session of bustling from class to class and trying to keep up with the pace of student life. A typical day started with a ritual of procrastination that involved hitting the snooze button repeatedly until I had exactly one hour and fifteen minutes before my nine o’clock class. I awoke first, feeling tired and not the least bit refreshed. I shuddered, faintly recalling hearing Karen’s voice in a dream.
“Keep living,” she had said. “Don’t be sad because of me.” Was that really her, I wondered, or am I just grieving?
I pulled off my nasal oxygen cannula as I staggered to the bathroom before starting my treatment. After I had taken a few breaths without the pure oxygen, my morning coughing fit began: a jolt to my cardiovascular system akin to doing fifty jumping jacks immediately after getting out of bed. I stood before the bathroom mirror and looked at my reflection in the dim morning light. My face was red from coughing, and it had puffed up like a balloon. I had not fully recovered during the last hospitalization over Christmas. I had been treated with high doses of prednisone, a steroid, to decrease the inflammation in my lungs. Prednisone had caused my face to swell and my mood to slide into a deep depression.
In the semidarkness, I assembled my nebulizer pieces, which I’d sterilized the night before and left on the shelf, under a paper towel, to dry. After I filled the medicine cup with Albuterol, a stimulant that opens the airways, I turned on my nebulizer and shouted, “Isa, time to get up. I have a nine o’clock class.”
She stirred in bed and mumbled, “Five more minutes.” Always the slow one, I thought. The nebulizer mist moistened the secretions in my lungs, and I stopped to cough, turning off the machine in between violent fits of coughing. The taste of mucus filled my mouth, salty and fermented. I spat into a tissue. Putting my nebulizer back in my mouth, I drew up a syringe of tobramycin from a small glass vial.
I grabbed another plastic vial filled with clear liquid and squeezed its contents into another nebulizer cup. This magic potion was from the clinical trials for DNAse, the newest and most promising drug for CF. DNAse was an enzyme made through recombinant DNA technology by Genentech, Inc., that helped liquefy the thick mucus in CF lungs. We had learned about a clinical trial for DNAse from an article in the National Enquirer and had enrolled in the blind trials in February. Although we both participated in the trial, qualifying for it was a major feat for me. A minimum lung capacity of 40 percent was needed to qualify; mine was 42 percent. The clinical trials were my only hope to survive Stanford. I silently prayed that this was the real drug, not the placebo.
Systematically, I filled a small paper cup with my morning pills—enzymes, bronchodilators, vitamins, antibiotics. I grabbed my T-shirt, jeans, and a pair of earrings, dressing myself in less than two minutes and brushing my hair while I inhaled the Albuterol.
“Isa, get up!” I yelled. “I’m starting DNAse now.” That was her cue. Her morning coughing fit was drowned out by the buzz of the nebulizer machine coming from her side of the room. She flicked her light on and opened up a textbook. I squinted: Ecology.
“How can you start studying already?” I asked. “That light’s giving me a sinus headache.”
“I have a midterm tomorrow. I have to study as much as possible. Just deal, okay?” Isa was majoring in human biology with a focus in wildlife conservation, determined to pursue a career as a conservation biologist, an environmentalist, or something that would allow her to work in nature. Fat chance, I thought. She can’t even start her day without electricity.
After about ten minutes, my nebulizer sputtered, signaling that the DNAse had run out. I turned off the machine and dashed to the bathroom to wash my face and brush my teeth. I grabbed my glasses and keys and rushed out the door, heading toward the cafeteria. The halls were empty; few students were awake at this hour.
In the cafeteria, two sorority girls stood in line, talking about Rush. “Oh, my God, Heather,” one said, as she flicked her blond hair over her forehead. “I’m totally gonna rush with the Tri-Delts in the spring. I swear I hit it off with one of the girls at the party last night. If I don’t get in, I’ll just, like, totally die.”
“Don’t worry about it,” the other one said. “You can also try to get into Theta. I’ll talk to my sorority sisters and they’ll make it happen for you. I promise.”
I couldn’t believe that Rush was such a priority. I looked at the girls. They epitomized health: smooth, tanned skin; blonde, flowing hair; muscular arms and legs. They seemed to coast through college life without struggles, seemingly happy-go-lucky and so carefree. They didn’t have to worry about their friends dying or about dying themselves.
Ignoring their stares, I grabbed two bowls of cereal, two quesadillas, and two glasses of juice and put them on my tray. I was not bulimic, like some of the girls; I was just hoarding for two. With a tray full of food, I marched back to our dorm room, arriving just as Isa was finishing her nebulizer.
“Quick,” I demanded as I put the tray on my desk, “I only have about fifteen minutes for therapy.”
“You should’ve gotten up earlier,” she nagged. She closed her textbook.
“I wouldn’t talk,” I replied. I leaned toward her. “Isa, do I smell? I don’t have time to shower.”
She put her head toward my neck and sniffed. “No, but your hair is pretty greasy. You better put it in a ponytail.”
I kicked off my Birkenstocks and dove onto the pile of pillows assembled on her bed. I set the timer for fifteen minutes and turned on the radio. Celine Dion’s voice drowned out our percussion noise. Isa began pounding my back, her hands encased in mittens. We wore mittens to muffle the loud clapping noise.
“You’re doing me too softly. I need it harder. I need it in the upper right lobe; I’m junky there.” I demanded. Since I’d begun the clinical trials, mucus seemed to flow out of my lungs with less effort. The goo that clogged my lungs appeared thinner, like mustard rather than mud.
“My mucus is so disgusting, like it’s festering from the depths of my lungs. I think I have the real drug.” I said. My breath reeked of Pseudomonas. “You’re so lucky. I don’t feel a thing. I probably have the placebo.”
She stopped pounding and scratched her forehead. “But that’s okay. You needed it more.”
Isa’s lung capacity was over 60 percent; she had qualified for the DNAse clinical trials without even trying.
“Well, I’ll let you have a whiff of it later,” I replied. It wasn’t fair that she had the placebo. I could let her have a hit of my nebulizer pipe if it helped her feel better, too.
When my time was up, we switched positions, and she lay on the pillows. I grabbed my other nebulizer and started my tobramycin inhalation as I donned the mittens. I pounded Isa’s back. No time for a back rub or back scratch this morning; we plunged straight into the misery. As I pounded her chest, I felt the skin on my hands split from the impact.
“This isn’t going to be enough therapy.” Isa said. “You better come home after class so we can finish. I need more.” I hated her nagging. In my resentment, I hit harder. She liked that.
“I can’t. I have a HAPA meeting at noon.” In my attempt to jump on the bandwagon of extracurricular activities, I had joined a student group called HAPA, an appropriate acronym for the Half Asian People’s Association. It was a social network of fellow racial mutts who couldn’t quite fit in and lived culturally dual lives. “I’ll do you more this evening.”
Then Isa said, “We’ll have to meet at 7:30 sharp for therapy because I have taiko practice tonight at 9:30.” Isa was strong enough to play Japanese drums.
“Fine, but you better not be late. I hate waiting for you.” I envied Isa the energy to go to her Japanese drumming practice till midnight.
The timer finally rang. I had twelve minutes to get to class. My head pounded from hyperventilating as I vigorously inhaled the antibiotic, trying not to waste a drop. I turned off the nebulizer.
In five minutes, I gulped down a cold quesadilla and a soggy bowlful of cereal and guzzled the juice with the dozen pills from my paper cup. I grabbed my keys and my backpack and shuffled into my Birkenstocks. As I walked out of the dorm I gathered my messy hair into a ponytail. I didn’t care how I looked, only that I could breathe. Outside, a light rain began to fall, and the oak trees swayed. I hustled onto my bicycle and began panting after only a few spins of the pedals. I huffed and puffed to class, coughing and spitting up mucus as the early morning bike ride moved more secretions. Like a dog leaving its trail, I was leaving my mark on the Stanford campus.
I slid into my seat just as the professor began his monotonous rambling. Within minutes, I was fighting to stay awake in the dark, oxygen-deprived, crowded lecture hall. I avoided the instructor’s gaze, hoping not to be a victim of his inquiries. My mind wandered, touching on Karen. I felt drowsy and unfocused. Aristotle’s writings were written on the overhead—absurd intellectualism and meaningless bullshit to me. The eloquent, erudite responses of the other students impressed me. I wondered how they could care so much about Aristotle. I thought, I really don’t give a shit. I am not a real Stanford student.
Behind me, I heard a fraternity brother whisper to his buddy, “Dude, I partied so hard last night, I’m so hung over. I got up fuckin’ five minutes ago.” He pulled his sweatshirt hood over his tousled hair as he leaned back in his seat, relaxed.
A mother of a woman with CF once said to me, “No one really realizes how much it takes for people with CF just to show up.” She was so right.
Excerpted from The Power of Two: A Twin Triumph Over Cystic Fibrosis by Isabel Stenzel Byrnes and Anabel Stenzel. Copyright © 2007. Reprinted with permission by the University of Missouri Press.
