In Sickness and in Health

March 28, 2012

Resident playwright Stefanie Zadravec's article In Sickness and in Health appeared in the March 2012 issue of American Theatre magazine. It is reprinted here in its entirety with permission from the author.

In February 2010 I was 40 pages into a new script, a play about a baby with a rare and mysterious illness, when my then 11-month-old son was admitted to the hospital and diagnosed with one.

The original inspiration for The Electric Baby came from a 2007 episode of “Frontline” about a young couple planning the funeral of their child, who was born with fatal chromosomal abnormalities. I was struck by their dignity and sense of purpose while coping with something so difficult.

Around that time a friend’s young son died after a two-and-a-half-year battle with cancer. In the months that followed, she and I would meet for long walks, avoiding certain playgrounds but, on one occasion, purposefully revisiting the Central Park Carousel. For me, her ability to dress and get out the door, not to mention look her son’s favorite carousel horse in the eye, was nothing short of heroic.

I became focused on what one might call “real problems,” the irreversible sentences—a terminal diagnosis, a car accident, a sick child—that turn your world upside down, leaving you paralyzed and isolated while the outside world rushes past. I was interested in how some people manage to carve new lives from tragedy while others remain stuck.

But before I could begin, a few of my own “real problems” forced me to put playwriting on hold. I became pregnant in 2008; as it progressed, my pregnancy was deemed high risk, and I was put on bed rest. My twin sons, Colin and Martin, were born 10 weeks premature. Martin developed a near-fatal infection and needed multiple blood transfusions. Colin’s heart rate would frequently dip without explanation, and one day it stopped and he had to be revived.

After a two-and-a-half-month stay in the neonatal intensive care unit, everybody came home eating and breathing, and we eventually settled into the normal but exhausting routine of sleep and feeding schedules. Though I was too tired to work, I felt I now had firsthand experience for my play about the sick child—not just the life-and-death stuff, but the knowledge that little babies, even very sick ones, have a peaceful power within them.

I had fully imagined the cast for my play—a group of lost souls living on the periphery: an older, childless couple isolated from the world and each other; an African immigrant and his Romanian wife keeping vigil over their sick son; a lonely waiter; a young man with a stutter; and an angry young prostitute. Each of the characters would be in some way invisible until a car accident and a woman with a glowing baby—I was thinking maybe one of those plastic Jesus-in-a-manger dolls lit from within—facilitates an evolution. An electric baby; it was just a working title but something to go on.

When my sons were nine months old, I felt ready to write. One son, Colin, had a lingering cough and was fussy, but I managed to work while the babies napped. I even had a generous deadline five months down the road, a public reading at the Working Theater in New York City, where I live.

It felt good to be writing again. Despite everything I’d been through, the words that came tumbling out were funny and full of energy. But Colin’s cough was getting worse. We noticed he was breathing fast and his lungs retracted. I’d call the doctor, but all he wanted to know was whether the baby had a fever. I’d bring him in and get a diagnosis (bronchiolitis, asthma, pneumonia) and they’d send me home with a pile of prescriptions for medications that made no difference. I’d give it a few days, see no result, then tote my son back in. We saw a specialist, the best in Brooklyn, but Colin didn’t get better; he was getting worse.

The day they called to tell me Colin might have pneumonia, I brought him back to the specialist. He was vampire white, with huge dark rings around his eyes and deep red lips. This time there was no medicine. We were sent directly to the emergency room, where Colin was immediately hooked up to an oxygen source.

That was Feb. 2, 2010. Colin has been attached to an oxygen source all day, every day, since then.

We spent 10 days in the hospital, where numerous steroid and antibiotic cocktails failed to improve Colin’s breathing. A botched CT scan meant we went home with a best-guess explanation of how a virus might have permanently damaged 25 percent of Colin’s lung tissue, but the experts weren’t certain.

As we wheeled our little boy and a very large tank of oxygen out of the hospital, someone said, “Don’t let him knock that thing over!” and made a gesture I could only interpret as some kind of missile launch. I didn’t know enough about pressurized air and flammable gasses to realize he wasn’t joking, so I smiled and waved.

A respiratory therapist met us back at our apartment with an oxygen concentrator, a portable oxygen system and what seemed like an endless supply of tubing. The therapist rattled off such an exhaustive list of how-tos and dos-and-don’ts that, when he was done, I wasn’t breathing so well myself.

Days were spent administering meds on a frequent schedule and recording breathing rates and blood oxygen levels. Our apartment looked more like a medical clinic than the home of two toddlers. I slept on the floor next to Colin’s crib because he woke so frequently and was so distraught. A month later, severe, unrelenting coughing meant another brief stint in the hospital. When we came out, I realized it was almost April.

Friends sent encouraging notes using words like supermom and warrior, but all I felt was, Why us? Why him? Nobody wanted to bring germs over, so I spent a lot of time alone, paralyzed by a new set of daily decisions and a mounting pile of medical bills.

I told my husband that I should probably call Mark Plesent, producing artistic director at the Working Theater, and let him know I wasn’t going to finish the play for the May reading. I cried. Admitting I wasn’t going to finish the play meant admitting our son might not get better. His illness continued to baffle the doctors, so I needed to let go and devote myself to him.

My husband had a different take. He agreed that it looked like we were in for the long haul with Colin. He’d been reading a lot about interstitial lung diseases and was convinced that Colin had one. It wasn’t going to be an easy road, but he felt that with a long fight in front of us, for our sanity, we needed to have a life. It wouldn’t be the life we thought we were going to have, but some version of it. He said it was my choice, but he thought I should write the play. And then my husband asked me out on a date.

That week, I rented a desk at a local workspace. I left the sitter with every phone number I could think of and went to write for an hour or so. At first I couldn’t focus, but each day I went back it got easier. I’d catch myself laughing over the keyboard, getting lost in the imaginary problems of my characters. I couldn’t work every day, but on the days I wrote, I felt different—happy, energetic. It was an act of defiance to shut the apartment door and leave this nameless disease and the stranglehold it had on our lives. Working helped me settle back into parenting with renewed gusto. The Very Hungry Caterpillar, again? Bring it on. Medical bills got sorted and paid.

While walking home from the work space one day, I caught myself envisioning a future production. The future was something I’d stopped thinking about when Colin got sick. Imagining a production felt downright hopeful—which was good, because indications were that Colin wouldn’t be coming off oxygen any time soon.

Around that time, my husband found video of Colin at 10 weeks old with the same lung retractions the doctors noticed only a few months ago. This meant Colin had been sick all along and everyone had missed it. Our pulmonologist, though unwilling to say he was wrong, began suggesting we get a lung biopsy to “rule out” other more serious illnesses. We braced ourselves.

I continued to show up at my desk, but the work slowed. In my play, the baby with the rare and mysterious illness would die. The more I read up on pediatric interstitial lung diseases—all rare, some fatal—the less momentum I had with the play.

A day trip to a Long Island hospital ruled out cystic fibrosis. Bloodwork for a genetic disease was taken and sent to California, and our doctor told us that for this kind of lung biopsy to be done with proper protocols, we would need to travel. His thoughts were Cincinnati Children’s or Duke University Medical Center.

Around this time, instead of moving my play toward its climax, I stopped. I reset the entire story in Pittsburgh. It was a completely random decision. I didn’t actually know much about Pittsburgh. But I decided that it was both urban and middle class, a setting that fit what I was shooting for with the characters. It felt like a person could get stuck there, so that’s where my story belonged.

Two weeks later, we returned to the pulmonologist’s office. He’d spoken to the doctor who would be doing Colin’s biopsy. We would not be going to Cincinnati or Duke. He was sending us to see Dr. Geoffrey Kurland at the Children’s Hospital of Pittsburgh.

Life imitates art indeed.

Before we left for Pittsburgh, though, I had to finish the play. Two weeks before my upcoming reading, I confided in my director, Daniella Topol, that I was stuck. She told me that if I didn’t feel like finishing the play she was pretty sure the folks at the Working Theater would understand. I told her I wanted to finish. So we gathered actors in a studio and read what I had.

Daniella noted there was something really rich about the parents of the electric baby, the African father and the Romanian mother who had a folk cure for everything—everything, that is, but the illness that was killing their son. And then she misspoke. She said, “Keep going with those folktales.”

There were no folktales in the script, but a light bulb went on in my head. I went home and started reading Romanian and Yoruba folklore. I picked a few tales, retold them in my characters’ voices, and a deeper play began to unfold—a play about the transformative power of story.

I even allowed two main characters in the play to create a folktale out of their story. It’s funny and moving, and it tumbled out with the same unconscious magic by which the glowing baby had originally appeared in my mind. The play had found its heart. Once finished, what began as a purely edgy play had emerged as a more soulful meditation on grief.

A month later we arrived in Pittsburgh. We sat down with Dr. Kurland, and for the first time since Colin had become ill, a doctor said: “I read all the paperwork, but I want to start at the beginning. Tell me the whole story.” I knew we were in the right place.

After several consults and dismal results from Colin’s lung function test, the team decided to move forward with the lung biopsy. Every symptom suggested a genetic surfactant protein deficiency, a condition that would likely require a lung transplant down the road. It could also be fatal. I’d done some reading as well, and although Colin didn’t have all the symptoms, my gut told me he had something called NEHI. The doctor said, “The biopsy will tell. You never know; mothers have a way of being right.” The next day he came into Colin’s room smiling. I was right.

NEHI, although extremely rare (there are fewer than 500 cases worldwide), is a benign disease, meaning Colin won’t die from it. Of the rare pediatric lung diseases, it’s the one you want. Although Colin will spend the next several years on oxygen, he will eventually outgrow the need for it.

It seemed like every time I wrote something into my play, it came true. I was so worried they’d find Colin had a terminal lung disease that I’d forgotten that even though the child in the play dies, the play is about finding hope in new beginnings. We certainly got one in Pittsburgh, my new favorite place.

The trajectory of the play since that summer has been equally magical. With a sick boy, there are limits to the amount of travel I can do. Playwrights Realm in New York selected the play for a yearlong fellowship, which was followed by a summer workshop at PlayPenn in Philadelphia. Miraculously, Daniella has been available for all of the work, and our shorthand with the piece has helped it grow.

Last spring I sent the script to Karla Boos, artistic director of Pittsburgh’s Quantum Theatre. Karla has an award-winning company that does site-specific work, and I wrote to see if she’d like to read a play set in her city. Unbeknownst to me, Karla and Daniella knew each other from years before and had recently had coffee together and talked about my play. Karla read The Electric Baby, and she committed to a production that will run March 29–April 22.

I went to Pittsburgh for auditions and early design meetings, which involved piling in Karla’s car and driving around Pittsburgh to find a home for the production. Pittsburgh has extraordinary architecture and haunting abandoned spaces. We even looked at a space in the Children’s Hospital, but felt it wasn’t quite right as a central location for the play. We needed a hidden spot, both warm and rustic, where the central character Natalia holds a vigil at her son’s bedside as she knits and spins the story.

When we entered the Waldorf School, a hush fell over the entire production and design team. The Waldorf School is located in an old Pittsburgh mansion that from the outside looks like it might belong to the Addams family. Inside it’s warm and strange and inviting. The central image of the play is a disappearing moon, so you can imagine the reaction when we walked into the school’s auditorium to find its ceiling painted dark blue with gold stars! Around the periphery were faded murals of myths and folklore. During the day, the school is filled with children and the smell of applesauce. At night, we will rehearse, then perform, the play for the city of Pittsburgh.

For a long time I felt embarrassed to talk about Colin’s illness in relation to this play. The story of the play is not my son’s story, and I felt compelled to assert the fact that I’d started the play long before he got sick, lest it be dismissed as sentimental biography. It’s a little more magical than that. It’s as if I’d been writing the play so that I’d have a story about hope when I needed it most.

One of the folktales in the play became particularly meaningful to me. It’s the Romanian story of a mother crow and her child. In the story, God sees the baby crow, spits, and tells the mother it is ugly. God refuses to admit he created such an ugly creature and sends the mother bird around the world to find a more beautiful child. The mother goes on the journey, but this she cannot find, so she returns to God, saying “I have circled the earth, and no child is more beautiful, more delicate than my own.” God likes this and tells her she is a true and devoted mother.

Wherever we go, people stare at my son. I realize they see a sick child with a tube taped to his face before they see the wonderful boy I know. I think about the mother bird, her pride and her love for her child.

Stefanie Zadravec is a resident playwright at New Dramatists and lives in Brooklyn with her husband and twin sons.

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