Saying Its Name

I swore to hate the woman who told me to undress, who sat me on the examining table, and who took my father away to talk with him outside my presence. I hated her for her chilly brusqueness, for having seen me in my underpants, and for having mentioned within earshot the words cystic fibrosis.

I knew from a television commercial that CF was about children dying. It was about a girl and her doll on a hospital bed, in an oxygen tent, while sad music played and a deep voice talked about all the unlucky children who would die from this disease unless money was given to help stop the suffering. Then the sides of the screen turned to a gray-white mist that shrouded everything until there was only silence.

I wanted to leave in a hurry, to collect my pants and my dad and rush away from the nurses and doctors and their electric sweat tests and stethoscopes and white jackets and stale, clean alcohol smell. I wanted to cry. I was nine; I was alone, ashamed, embarrassed; and, according to the man on TV, I was dying. I whined in the hall to my dad that I didn’t want to have CF. He looked shocked and asked how I knew what it was. Then he said he didn’t want me to have it either. That was all he said before he took my hand and continued walking.

I swore to hate all of them and everything. I kept a list.

I hated my new doctor, whom I met in a hallway while I was crying. He told me to stop.

I hated the physical therapist, who taught me postural drainage by laying me tilting downward on a padded board and clapping on my chest; who told me I’d have to do this twice a day for the rest of my life, and then tried to tell me about Disneyland.

I hated the drawer of candy reserved only for children with CF, though I liked the nurse who kept urging me to take some. The more she offered, the more I could say no, no, no.

I stayed as far away from the clinic as possible. The whole place, with its sick and wounded, was like some kind of spook house where, if I wasn’t careful, I would touch something horrible, catch something invisible, become something altogether undeniable.

An apostle from my church blessed me that first day in the hospital. He was a real apostle, the kind Jesus had, only he wore a suit. He smiled when he saw us — he knew my dad personally — and offered to give me a blessing. Do you know who this is? Dad whispered. Yes, I said. I knew about apostles. I knew about miracles, too. I looked for signs of this apostle’s power. He was a big man, with clear eyes and large palms. He put his hands on my head and prayed, blessed me to be strong and have faith, to know that God loved me. I could tell right away he wasn’t going to heal me. Still, I listened to the very end, hoping. I knew you didn’t make enemies with apostles, so I smiled back. I could not hate him, because he was an apostle, but I hated his weakness.

In the parking lot I asked my dad why the apostle hadn’t healed me. He said he didn’t know. I had my hand wrapped around two of his fingers. I did not let go, could not let go. I could not hate my father.

They gave me green enzyme capsules, larger than a Contac and made from pig enzymes, my doctor said. Take two or three with every meal, he told me, grinning. And no more peanut butter, or ice cream, or French fries, or Kentucky Fried Chicken, OK? He tossed the brown glass bottle of them in the air, then handed it to me. I hated him for that.

I could swallow four at a time without a hitch, which was better than my brother, who could barely swallow one, but it was a hollow victory because he didn’t have to take them. Soon I started forgetting them and lying about it when asked.

The capsules broke sometimes, at school, or in my pocket, or on the playground. I would dig my hands into my pocket and get powder jammed under my fingernails or scrape my fingers on the edge of a broken capsule. When they broke, I pulled my pockets inside out on my way home from school and let the wind carry the powder into somebody’s bushes. If they didn’t break, I took them secretly in the lunchroom. Vitamins, I’d say, if someone saw. I skipped them if I was having too much fun, or took them after lunch, when they weren’t any good to me. Sometimes I kept them in my pocket for days.

I hated postural drainage, too. I insisted on using a code for it in front of my friends. My father would yell that he needed to see me for about twenty minutes when it was no longer possible to put it off. One time a neighbor girl caught us in the act. The setting sun was shining through the lace curtains of our patio door. I was lying at an angle on the therapy board (the same one my father had used when he’d had polio), and he was clapping on my chest, trying to loosen the mucus that never came, when I noticed the silhouette of her head peering in the window. I sat up and yelled, Look! But it was too late — she was already gone. I hated her, then, too.

When I was fifteen I had the chance to work away from home, but only on the condition that I would let my cousin do the therapy for me. I swore that I would. He did it twice. I explained to him that it was optional, to be done only when I was obviously sick, like with the flu, and that he wouldn’t need to do it again. He believed me, or maybe just didn’t know what else to do. That day I promised myself I would never again get on that board, and I have kept that promise.

But I couldn’t get completely away. At a picnic, absorbed in hamburgers, I would see the red and green initials of a Consolidated Freightways truck rolling south on the interstate, and the familiarity of those letters would sting for just a second before I forced myself to forget. Every time I coughed too loudly or brushed my hand against the pills in my pocket, I exercised this same trick. I kept control this way. I could do it forever, I thought.

 

One in twenty-five Americans carries a copy of the defective, recessive CF gene. Most are unsuspecting because their dominant, healthy gene compensates. But when two unsuspecting carriers conceive a child, their baby stands a one-in-four chance of inheriting both his or her parents’ faulty genes, and cystic fibrosis is the result. It is the most common inherited fatal disease in the United States.

The CF mutation causes a faulty flow of salt molecules in the cells that line the walls of the lungs and pancreas. Thick, sticky mucus results; in the pancreas, this viscous fluid blocks the flow of enzymes to the stomach, and the child fails to absorb nutrients. In the lungs, the mucus restricts airflow and acts as a culture for bacteria. Over time, frequent infections inflame and then destroy lung tissue, ever decreasing the capacity for air.

CF kills three people every day, according to the New England Journal of Medicine. I knew one of these people. Just an acquaintance, really. He was wandering through the clinic at the University of Utah Medical Center one afternoon when I happened to be there getting a checkup. He had his portable oxygen with him, tubes running into his nose. He was laughing, joking. He scared me.

He was waiting for a double-lung transplant to come through. A newspaper story about him hung on the door of the clinic, along with a picture in which he looked strange and helpless. I didn’t usually read articles about sick people. But after he left I read it, because seeing him there, with his wry smile and slight slouch, a real, palpable dying boy, intrigued me beyond my ability to restrain myself. We were linked somehow: he had what I had. Despite the huge, obvious differences that I believed would forever separate us, there was no denying that somehow we were linked.

Anybody about to have a double-lung transplant is dying; it’s too dangerous to try on someone who might live. Besides just the surgery itself, they suppress your immune system for the rest of your life to keep you from rejecting the new lungs. Survival is a fifty-fifty proposition, but if you make it, CF never comes back to the lungs. I tried to imagine that.

You also had to have a hundred thousand dollars. I was reminded of that a few weeks later when I saw his face and his story pasted on jars of change at Smith’s Supermarket on Sixth Avenue. I know him, I thought, and wondered if anybody would stop to read his story, if the lady writing her check would drop in a quarter. It seemed he was trying to put us all in some kind of emotional headlock with that plaintive photo and his desperate circumstances. That’s how brash dying makes you, I thought.

I tried to picture myself standing in front of the store manager, explaining about my disease and how I needed a hundred thousand dollars to live. I’d rather die, I thought.

I didn’t contribute to his cause. I should have — we were confederates — but a quarter seemed as if it would just be mocking him. Later, I heard the operation was a success. Later still, I heard he died from complications.

Stories like his are why I stayed as far away from the clinic as possible. The whole place, with its sick and wounded, was like some kind of spook house where, if I wasn’t careful, I would touch something horrible, catch something invisible, become something altogether undeniable.

 

When I was twenty-three I caught the Asian flu. I had never before been so sick, and my health was never the same again. My cough got richer, deeper; my infections more frequent, more difficult to treat. I had less air. Suddenly, unexpectedly, long bike rides winded me profoundly. Within a year or two, trips to the clinic had carved themselves into my regular schedule.

At first I blamed this change in my health on a bad relationship with a beautiful piano player. I had begun to love her, and in what I perceived as fairness to her I had told her I was likely to die early and that I probably couldn’t have children. I pointed out that, after all, we were meant for adversity, quoting one of the leaders of our church. She said that while it was true we were meant for adversity, it was also true that we shouldn’t seek it out. I couldn’t disagree. We stopped seeing each other, and I vowed to tell no one else.

Afterward, I concluded that the weight of that moment had adversely affected my chi, my vital energy, which explained my weakened immune system. I signed up for acupuncture treatments. I didn’t mind the needles, or even the phenomenal paralysis that one day caused me to drop to the floor of the examining room, but the treatment brought no relief for my cough. So I theorized that my disease was a result of a sour mind. I believed that if I could dig up all the moments of hate and bitterness in my life and retroactively forgive every offense, the ensuing rush of love and positive energy would reactivate my immune system and cause a remission. On the advice of a naturopath from New Zealand, who also prescribed a crate of oranges, I wrote out all the anger I supposed I had at my mother for dying early, then burned the letter. I stopped taking my enzymes and antibiotics. My coughing got worse, and my stomach ached.

I tried being more valiant in my devotion to Jesus. I sought the power that had healed the sick and made the lame walk, and which He’d promised all believers everywhere. I got up early and read the scriptures. I prayed. I went to church, paid my tithes, tried not to think evil thoughts, and again offered up my drugs — this time on the altar of my faith. But again my coughing got worse.

I tried herbs. I bought double-zero-sized clear-gel capsules and filled them with echinacea root, marshmallow root, and bee pollen, with cayenne pepper to catalyze the reaction. These were natural antibiotics, according to my brother’s herbal counselor, who didn’t know exactly what CF was but was sure anything natural was better than regular antibiotics, the very name of which meant “anti-life.” Again, infection came, and I began to keep my sister’s children awake at night with my coughing, so I moved outside with my sleeping bag. My sister came out in her nightgown to say, quite delicately, that I was disturbing the neighbors.

I threw the herbs away. I had given up trying not to sin. I let all my latent hate and bitterness seep back in to where it felt most comfortable. I called my doctor and confessed to yet another infection. I asked him why he thought I was getting so sick. He laughed and said I had CF, an old joke of his. I smiled. I’ve always had that, I said, but I haven’t always been this sick. He said everybody who’s been asymptomatic feels that way eventually. This is how it hits.

So how long do I have? I asked. He said he didn’t know. If I had emphysema, he said, he could plot me on a chart — it was that predictable. But with CF there was no telling. I could plateau or I could drop; it was anybody’s guess. But there are never any reversals, he said.

 

Karla was the first person with CF with whom I ever made friends. Once, I lent her my university ID. She needed it to check out books, and I decided to tag along. We had to park off campus and walk to the library, but it wasn’t until we had arrived on the third floor that she told me she was impressed — I wasn’t even breathing hard. I noticed then that she was doing her best just to keep up, trying not to be obvious as she caught her breath. I found myself wanting to comfort her, to put my arm around her and laugh and tell her I was sorry, but I didn’t. I turned away and pretended not to hear. Her feebleness scared me.

I don’t remember exactly when I first noticed it in myself. I do recall thinking about her some time later, while I was walking up and down the rows of the stadium parking lot in the cold, unable to find my car, losing my breath.

After a meeting on lung transplants, I asked Marian, one of the nurses, how I was going to die. I was sitting with her on the steps in front of the lecture hall, where they were serving sugar cookies and punch and people were milling around murmuring about health-care costs.

Marian is the prettiest nurse at the university. She isn’t much taller or older than I, and she has my coloring — dark brown hair and eyes — but with creamy white skin and dimples. I wanted details, and I wanted them from her.

Is it suffocation? How, exactly, does it feel? She wouldn’t get specific, but she held my gaze as I asked. I believed the things she said. I asked if she had ever been there when someone with CF had died. She said she had, that it wasn’t very pretty. I already knew that, but I didn’t mind her saying it. I liked knowing she had been there, and had come back, and was still so beautiful.

 

In September 1991 my lung capacity was half what it should have been for someone my age, height, and weight. I was teetering on the line between the mild and moderate ranges of my disease. I had lost a full liter of lung capacity in the previous year alone, but my doctor thought that if I came into the hospital for a stay, he could bring it back up.

That June I had been to visit Karla in the hospital. It was a brief visit; I was just curious. I was beginning to catch on to the routine by then — the predictable week-long stay with intravenous antibiotics, intensive chest-percussion therapy, and lots of rest. Still, I wouldn’t have gone back for a second visit if she hadn’t made me promise.

She and her sister, who was also sick, showed me around. I found myself in places I had sworn I would never go, like the exercise room, where cystics, as she called them, rode Exercycles and spit into cups to measure their production. In Karla’s room, the woman in the other bed was dying. I could hear her cry out softly, and each time she coughed I had to grip the sides of my chair. Karla kept right on talking, and so did I, because to stop would have been to draw attention to this woman. It seemed important to carry on.

Karla introduced me to everyone on the ward, and she told them all I was a cystic, as though it were some kind of miracle. She made remarks to her sister about my veins. They seemed envious. I asked why, and they just laughed, shot sly glances at each other, and moved on. Later it occurred to me that good veins might make it easier to insert needles, but this connection came slowly, tentatively, like the title cystic, which at first revolted me, then slowly grew on me as it became clear that no one seemed to care. But it was enough just to try on illness for an hour, to contemplate for a moment the handiness of my veins. I would not be facing these things any time soon, I was certain.

 

It’s here. “Here” is the University of Utah Medical Center; here, after so many years, is this moment, 4 A.M., after the night nurse has attached another bag of oxacillin to the tube in my arm. Here is the gray light that blurs the borders of the room, the shaft of fluorescence from the nurse’s station that slips under the door, and the window next to my bed looking out onto the foothills, over which a large moon hovers. Here is this portable pump, pushing in a second, experimental drug, and the regular whir of its small electric motor, two seconds out of every sixty, like a slow mechanical lung. Here — in this bag hanging from the pole, this nurse’s visit, this light, this room — is what I have been dying from secretly in my mind since I was nine, when that woman spoke the name of my disease, and the girl on television faded to white. It’s here, the moment I thought would kill me, and I’m alive.

 

I got used to being in the hospital. I walked the halls with mussed-up hair, wearing an old T-shirt and hospital pants, carrying my portable IV pump wherever I went so the juice would continue flowing. I watched for people’s reactions as I passed them by, to see whether they smiled or whether they looked away. Staff, especially women, usually smiled. Visitors mostly looked away. I let my family come to see me, and we went for walks in the basement corridors late at night. My old bishop called. I warned him that I wasn’t really sick yet, that this was just a protocol.

I took my IV port home for two more weeks of drug therapy. Everything fell immediately back into order. I wore long-sleeved shirts to cover up the tube in my arm. I told my boss I’d been to southern Utah during my time off.

I gave myself oxacillin four times a day, an hour each session. In order to get to work on time, I finished up my morning infusion on the freeway. During the day, I used the stalls in the men’s rooms on campus.

Sometimes the syringes broke, just sitting in their box in the refrigerator. I would dig my hand into the dark cardboard box and get the cool liquid all over my fingers. When I didn’t finish a syringe because I was late, or too busy, I left it in the glove compartment of my car, sometimes for days.

 

A woman in my modern-critical-theory class caught my attention. She was a self-confessed biker chick, had a pink cloth pig sewn onto the cuff of her jacket, and loved tattoos — even wanted to open her own parlor someday. Once, while we were studying together, the subject of writers happened to come up. She mentioned that she was writing her own book. I asked what it was about, and she opened her green bag and fished out a folder full of papers and newspaper clippings. The front page of the Macon Telegraph and News had her picture in full color and a headline with the word nightmare in it. I asked what the nightmare was. She said she was on parole.

Why? I asked, and she told me her story in bits and pieces: As a high-school student she’d gotten good grades and twirled a flag for the drill team. But by the time she was a senior she was into drugs, had dropped out of school and run away from home. She stayed strung out for days at a time. On a trip to Florida with her much-older boyfriend and his friends, five kilos of cocaine was found in one of the cars and they were all arrested for trafficking, a charge the authorities refused to reduce to possession because she refused to turn state’s evidence. She was bailed out after four months and came home to wait for her trial. In the meantime, she earned her GED, became a mother, and started college. She was eventually tried as an adult for a crime she’d allegedly committed as a minor, was convicted, and served twenty months in federal prison in Georgia. Now twenty-three, still in college, she lectured to women’s and children’s groups on the evils of drugs, paid her five-hundred-thousand-dollar fine in twenty-five-dollar monthly installments, and had twenty-three more years of parole.

She was angry. She was writing her book to expose the corruption of the justice system. Her jail and prison experience had sickened her soul, she said, and she believed keeping people alive on death row was a fate worse than killing them.

I said I thought the whole thing was really cool.

Selling drugs? she said.

No, that you’d tell me all this.

I wanted to roll up my sleeve and show her the glass capsule sewn into my arm. I wanted to say that she was right about prison and death row, to tell her the name of my disease.

She offered her manuscript to me for the weekend, and I took it home. It wasn’t just her, or her story, or that she carried it around in her bag with her that fascinated me the most. It was that when I asked her about it, she just smiled, dug around, and brought it out into the light.

 

The first person I showed this essay to was a friend at work. Sweat dripped down my armpits as I waited for him to finish reading it. He didn’t know what to say. Neither did I. He said he was glad that I had shown it to him. He’d had no idea, he said, just looking at me. He’d had no idea.

When I left work that day I ran from the building to my car, jumping along the way. I was in no specific hurry, but the elation at having fractured the dam of my secret was more than I could calmly contain. That feeling has never diminished. Each new disclosure is like a gust of clean, fresh air.