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Seeking patterns, hope in illness’ variables


Saturday evening my mom, who was emitting strange yelps at twinges around her rib cage and running a fever she never admitted was 104, finally let my stepdad drag her to the emergency room. At 3 a.m. Sunday, they admitted her. At 9 a.m. Sunday, my husband and I were to leave on vacation.

She insisted we go. Having had double pneumonia myself, and knowing only antibiotics and rest could help, I reluctantly agreed -- but not before reminding her, with full Irish superstition, of my track record. I’d gone to Spain on a work trip and come home to find my grandmother dead. I’d gone to New York and come home to find my favorite aunt dead. Just the past August, I’d been with my husband on the rough west coast of Newfoundland when his dad received a diagnosis of terminal liver cancer. “Don’t you go dying on me!” I teased my lithe, athletic mother.

Her laugh echoed in my mind for the next two months. Two days after we left, the pneumonia took a sudden sharp turn downward. By the time doctors performed a bronchoscopy, she needed a ventilator to breathe for her. That evening we found a grave message from her doctor and a tearful one from my mother-in-law. Two hours later I was climbing into a chartered single-engine plane, hoping my husband, who’s terrified of big planes, would forgive me.

By the time we tiptoed into the ICU, she was heavily sedated. She managed to mouth, “I love you” around the oxygen tube, but from that moment sank deeper and deeper into what the nurses called “the twilight zone,” medicine’s attempt to blunt the panic of being unable to draw your own breath, and the gagging scraping sensation of having somebody’s finger stuck down your throat.

We took shifts at her bedside while the doctors tried to figure out what was wrong. First they said inoperable lung cancer, and I immediately believed them, and began the grieving -- until my husband crisply told me to stop burying his mother-in-law, we hadn’t even seen the test results yet. Sure enough, the biopsy returned negative -- but she obviously had more than a common pneumonia, and they didn’t know what.

One week earlier, she’d beaten my stepdad at tennis -- although he still swore, half laughing, half sobbing, that she’d cheated. Now she lay before us wired and taped and trussed, trimmed like a sad tree, her skin flushed hot by the warmed oxygen forcing its will into her. I huddled under the blanket I had brought for her (daughters always end up selfish) and stared at the monitor. My wildest superstitions about leaving on vacation had been vindicated; now I was looking for pattern and hope in numbers I didn’t even understand.

Soon we’d divided them, my stepdad watching the heart rate and neon-green respiration rate, me obsessing over the blue oxygen saturation and orange peak pressure. At the bedside, we pulled our chairs close to the monitor, like old guys at the horse races who stay inside the betting area and watch the screens.

My mom, too, was racing against time, growing more feverish and disoriented every day. Suspended between physical strength and mental lucidity, she pulled at tubes, pushed away our hands, wedged her foot against the bar in a feeble attempt at escape. Each attempt set off a piercing alarm, further jolting her frayed nerves. Desperate to calm her and forestall her panicked awakenings, I talked nonsense about the magic bed that pulsed circulation into her limbs, the nice helicopter that landed every few hours outside her window. If I could just wrap each sensory impression in a soft blanket before it could pierce her. I groped for the right stories, held her hand for hours just in case it was keeping her calm. But the drugs had their own rhythm, far stronger than my soft experiments.

And still, they had no diagnosis. We were lost in the world of infectious disease, blameless and random and insidious, the prototype of sudden tragedy. The first week, I prayed Hail Marys nonstop every time I got scared. The second week, I didn’t even bother; every sigh of the ventilator had become a prayer. My helpless brain consoled me with a childlike logic that probably drove the nurses mad: “Her fever’s down? Wonderful!” “Her fever’s back, that’s good, right? It means she’s still fighting the infection?” “She’s calm at last!” “She’s mad as hell again. Thank God for that spirit of hers.” The variables fluctuated like the stock market on a crazy day. Trying to steady my reactions, I bent them into circles of rationalization, meeting at both ends.

Finally, the test returned from the Mayo Clinic: positive for Legionella. My mother, who had never worn a funny hat in her life, had Legionnaires’ disease. I raced to the computer, and by the time I’d downloaded 15 articles, I’d realized the power of urban legend. Legionnaires’ does not strike only at large conventions. Water-borne, the bacteria more commonly strike in individual, isolated cases -- but because it’s tough to diagnose and near-impossible to track to its source, the media and public health folks don’t take note.

Glad to have a focus, the doctors switched to a different antibiotic, and we came to our daily vigil with renewed hope. All my mother knew by now was thirst and air gurgling through a hole in her throat (they’d done a tracheotomy), and drug-induced hallucinations. Watching the nurses push and prod and stick her, I marveled at their calm. Didn’t they know they’d become fodder for her life’s worst nightmares?

Ah, but they kept reminding me: She won’t remember any of this. Trying to ignore her misery -- does suffering count if you don’t remember it? I glanced involuntarily at the monitor, then remembered the respiratory tech’s advice: “If I were you, ma’am, I wouldn’t pay too much attention to those numbers. It’s the big picture that matters.”

Slowly I stopped obsessing over the numbers, stopped looking for signs and patterns, stopped trying to cast a circle of protection around her. The womb of the ICU room, with its rhythmic over-loud breathing, took on a surreal familiarity, and even its terrors became routine. Numb, I drove back and forth each day through the fiercest summer storms I could remember and barely noticed them.

After three weeks of stalemate, the doctors finally dared a steroid drug they’d been hesitant to try. The very next day, as if by magic, my mother was noticeably better, and though we weren’t out of the woods yet, hope finally felt safe. I drove home that evening mesmerized by a sky streaked with translucent pink and coral, each cloud backlit and outlined in gold, as if the heavens themselves were registering her recovery.

Then I remembered the young woman crying in the hall that afternoon. Exiled to the waiting room while they bathed my mom, I’d returned to the ICU door and buzzed happily, only to hear that no one could come in, they had a “situation” with one of the patients. “Is it my mother?” I gasped into the intercom, but before the nurse could answer, the young woman spoke. “They won’t let me in either,” she said wearily, and then broke into fresh sobs. “I think it’s my mother.”

Just then the nurse relented and pressed the buzzer. I raced to my own mother’s room, ashamed to feel so relieved. By the time I left, curtains hid the other woman’s bed, and her husband and daughter were inside with a chaplain.

I looked back up at the sky’s pale streaky brilliance. No, it wasn’t a sign of my mother’s recovery; nothing in nature is that personal, nothing in life is just about us.

The only thing personal about this sunset was that, tonight, my heart was light enough to notice.

Jeannette Batz is a staff writer for The Riverfront Times, an alternative newspaper in St. Louis. Her e-mail address is jeannette.batz@rftstl.com

National Catholic Reporter, November 10, 2000