Edward Humes
Transcript of the 2002 Johnston Lecture
University of Oregon
Ever since I was invited to speak here, I’ve been trying to figure out just what the difference is between immersion journalism and every other kind of journalism, other than time. Lots of time. So much of the work is instinctual and intuitive. Frankly, I spend a lot more doing it than analyzing how I’m doing it. But you’ve forced my hand here.
It seems to me that the actual process of this thing we’re calling immersion journalism isn’t so different from any other sort of reporting. I come from a background in newspapers, where you have days or hours to find and assemble a story, not months or years. And, while the writing process is necessarily very different because of those time constraints, I can tell you that the best news reporters are indeed immersed in their subjects whether they know it or not.
Back in the 80s, when I was reporter in Tucson, my world was the courthouse. Good courthouse reporters know every inch of their domain. They know the judges who nap during trials and the lawyers who are good and the lawyers who are no good, who’s having affairs with who, who goes the extra mile to find the truth. They see most every petty outrage and tirade and bias and telling bit of dialogue, and can retell it verbatim over dinner or drinks, the daily displays of vanity and grandiosity and caring and callousness that form the vast panoply of human tragedy and comedy that make courthouses endlessly fascinating places. The reporter will know these things because it is his job to know that world, to be immersed in it and live in it.
But these sorts of fascinating details, these insider stories that reveal the fabric of our justice system, rarely if ever, find their way into any newspaper. And there is the answer to this question about immersion journalism versus all other kinds. Because this richness, this detail is not, by and large, considered news. So I suppose that is the answer to the question: what’s the difference between the two kinds of journalism. Traditional journalism is about what’s in the public domain. It may be obscure, or forgotten, or kept hidden from view when it shouldn’t be secret, but the power of traditional journalism lies in the fearless pursuit of the public’s right to know.
Immersion journalists, on the other hand, have no particular right to go where they go. In fact, law, tradition and culture essentially barred me from writing the books I ended up writing. The stories we seek are private ones, for every place or character or institution, even public ones, have a private life, behind the façade, where the real business of families and governments and schools happens, a boundary area much larger than the public zone. And a journalist can enter that zone only though pleading, cajoling, and gaining trust. It’s about securing the forbearance of those whose privacy you’re about to invade.
With that invasion comes a whole set of ethical questions journalists normally need not consider. What do you do, for instance, once you’re inside juvenile hall and a kid who has come to trust you suddenly confesses to a crime no one else knows about? What do you do when you’re sitting in a neonatal intensive care unit, watching a mother watch her daughter die after eight long roller coast months of dashed hopes? What is your obligation to the person who trusted you enough to let you be there during this terribly intimate moment, and how does that obligation conflict with your mission to reveal the life and meaning of what goes on in this world in which you’re immersed? And later, what is your obligation when you go to that little girl’s funeral, in a part of the cemetery you never knew existed, the place they call Baby Land, where the graves cover an entire hillside , headstones decorated not with flowers but with stuffed bears and party balloons and dolls. You go there as witness to a display of unbearable grief not because you are a journalist, because no journalists would be allowed there, but because you have become a part of these people’s lives.
Where, then, does the story end? Does the writer in you, deep down, horribly, see the drama playing out on the page as you are witness to these events? Do you acknowledge that some moments should remain private, even though you have license to use them as you wish? Where is the line when there are no lines?
These are the murky waters of immersion journalism. If a writer can navigate them, and find a formula for resolving such questions in a place where there are no hard and fast rules, then his work becomes a portal to hidden worlds most people never see, or that they think they know through TV or film or conventional wisdom, though they know them not at all. Those worlds for me have included the neonatal unit of a leading hospital in California, an unexpectedly human and humane part of the medical world, a place that works the way we wish the rest of medicine would, but rarely does.
I’ve spent time in the somewhat gothic world of a murderously corrupt Mississippi town, where it became impossible to separate the pillars of the community from those who should be pilloried. And I’ve inhabited the secretive world of our juvenile courts in Los Angeles, the largest such place in the world, where deciding the fate of young lives is considered scut work, the least prestigious assignment a judge or lawyer can get, far less desirous than litigating whiplash claims or contract disputes. No Dream Teams ply those hallways.
As I tried to write about these worlds, to bring myself and anyone willing to read about them inside these surprising places we think we know but do not, I had a surprisingly similar experience in each. I would spend days and weeks and months among those who live and breathe these places. Inevitably, sooner or later, some of them — many of them, actually — would ask: What book could you possibly write about us? We are so boring, we do the same things every day. Again, there was this public/private distinction. They couldn’t see who could possibly be interested in their private moments.
This, from the doctor who brings life to an infant no bigger than a soda can, as you or I would change a Band-Aid, in a place where surgery is performed under a microscope and nurses do CPR with two delicate fingers on chests as fragile as a hummingbird’s. They don’t even see it any more. They can’t. And this same perception, from a prosecutor who, day in and day out, decides the fates of families and children, who determines if a child is in danger or is dangerous, and who makes those decision to save or to punish forty times a day, one year out of law school. Boring, he says to me. Bureaucracy. Paper work.
One 16-year-old boy I met, who had been in the care of the juvenile court since he was five and had been utterly destroyed in the process, talked to me at length during a writing class I taught at juvenile hall. He told me how, over the years, he had forgotten the faces of his mother, sister and brother, who he had not seen since he was small. He was 16 at the time. He could no longer tell if his few remembrances of his childhood were really happy memories, or things he had just daydreamed. It’s like everything was just swallowed up, like I had no childhood, he told me. It was one of the saddest things I ever heard, but this boy, George, looked at me and said, Of course, no one wants to hear about that. He couldn’t grasp why I would put such a thing in my book. As it turns out, the title, NO MATTER HOW LOUD I SHOUT, is drawn from a line in a poem he wrote.
That’s why I love what I do, and why its worth the struggle with these difficult questions about what’s public and what’s private and what lies between. Honestly, though, I suppose I should say I never knew I was an “immersion journalist,” until someone said so in a review of one of my books. I hadn’t even heard the term before, and I’ve never quite been happy with the other labels people have come up with : narrative nonfiction (sounds boring), literary nonfiction (a bit too lofty — sorry Lauren), creative nonfiction (as opposed to what — noncreative nonfiction? Derivative and boring nonfiction?) But immersion journalism... I read that and thought, hey, that sounds pretty good. I like the sound of that. I like the very apt metaphor it suggests, of diving into deep waters, surrounded, buoyed, engulfed — and also risking getting in over your head, lost at sea, becoming overwhelmed by the amount of material, drowning in it if you aren’t careful.
Because I do come to this type of writing from newspapers, I tend to believe that the heart and soul of narrative nonfiction is in the reporting, not the writing. Tom Wolfe’s The Right Stuff is great writing, but it’s a great book because of the incredible job of research, of fact gathering, of getting inside the lives and minds and motivations of our first astronauts. That’s what made the writing possible. But there is a danger inherent in this process: Immersing in a subject tends to generate an almost impossible amount of information, devoid of structure other than what you, the writer, impose upon it. That, to me, is the most daunting part of it all. Real life, the ebb and the flow of anguish and hope in a juvenile court, or life and death in a neonatal intensive care unit, has a rhythm, a tidal force, but finding the sense in it, the larger story, is not so easily accomplished. And doing justice to the time and trust invested by all sides is yet another challenge.
First, though, you have to get to the point where you have the time and luxury to think about bringing order out of chaos, and the chaos is literal in my case. I refer here to the piles of yellow legal tablets I accumulate in alarming quantity during my research, which seem to end up all over the house before I’m done. (And, since someone always asks me this, yes, I take notes on everything, and no, I almost never tape record, except to tape my own observations when writing is inconvenient or impossible.) But you have to get there first, you have to get inside your chosen world. There is a process I use, though I’m sure everyone who does this sort of writing has their own unique method. Mine is a bit like the five stages of grief. You know them: denial, anger, bargaining, that whole thing.
For me, the first stage is — well, I’m being a bit facetious here — the Please, Baby, Please stage. My inspiration here is the character played by Spike Lee in his first hit movie, She’s Gotta Have It, in which Mr. Lee’s character constantly tries to gain the favor of virtually every woman he meets through abject, piteous begging. Please, baby, please, please, please.
Getting inside a closed world such as juvenile court, where there are legal and institutional barriers to public access (and where even the few open proceedings are deliberately made difficult to find and access), or the equally secrecy-obsessed world of hospitals, requires a lot of, well, pleading. More dignified pleading, perhaps, than Spike Lee’s, but only barely.
A century ago, our first immersion journalists, the muckrakers, who explored life in tenements and insane asylums and our justice system, wrote about the suffering of children imprisoned alongside adults. It was only a century ago that children as young as twelve were being hanged alongside adult offenders. It was this sort of reporting that led to reform and the impulse to create a separate, informal system of justice designed to rehabilitate, educate, even parent wayward children, a system cloaked in secrecy to avoid stigmatizing these children. It was a revolutionary idea, a noble idea. But it was spawned in a very different era, when the principal concern of Juvenile courts was dealing with orphans on the street, petty thieves, truants and runaways.
By the 1990s when I began my research on juvenile court, this same system had to deal with armed youth gangs, 12-year old crack dealers, arsonists and murderers — along with all the same minor crimes — becoming, basically, a younger version of adult court. Yet, with few exceptions, the same secrecy keeps the system shrouded from public view. Overloaded and underfunded, the system was at odds with its own founding ethic of rehabilitation because of a constant layering of new laws designed to treat children as harshly as adult criminals. But much of the dysfunction and its causes were hidden: The secrecy was really shielding the failings of the system from view as much as anything else.
So here, then, was the impetus for NO MATTER HOW LOUD I SHOUT. When I began research for the book, juvenile crime was said to be out of control. A certain image had taken hold, a conventional wisdom, that the old idea of juvenile court was passé, that it only slapped serious offenders on the wrist, that kids were getting away with murder. Policymakers were crafting legislation based on this conventional wisdom — they’re doing so to this day — asserting that what is needed was more punishment, and that the old ideas are in the way. There was talk of abolishing juvenile court entirely.
But no one was asking a simple, crucial question: Is this conventional wisdom true? How do we know? What really goes on day in and day out in juvenile court?
I saw a great book in that — not only the chance to explore momentous issues, but to do so by revealing an entire world, filled with drama and compelling characters, that had not been explored by other writers in recent memory.
It turned out conventional journalism only looked at juvenile court when something truly unusual happened. No one was looking at what happened the rest of the time. Yet, to my way of thinking, that’s where the truth of a place or a process lies, in what happens there every day, not during extraordinary moments, but in the ordinary, daily grind.
So that became my pitch to the gatekeeper of this place, the presiding judge. I pointed out the perversity of a system that only allowed the public and journalists inside only during its worst moments. You know, only when that eleven-year-old kid who commits murder has to be let off because he’s too young to prosecute, thereby creating this skewed image of a juvenile court filled with young predators it cannot handle. Meanwhile, there is no coverage, and no public understanding, of a simple truth: Such cases represent only a tiny fraction of one percent of what goes on in juvenile court. Ninety-nine-point-five percent of the cases are totally different and the way they are handled, for good or ill, is ultimately far more important and sweeping in its impact on society than the handful of cases getting all the press. It made no sense. I promised to tell the story of that 99.5 percent. Please, judge, please, let me do it.
He did. I was given a court order that essentially threw open the doors in a way that hadn’t been done before in Los Angeles or many other places. And because the head judge had given his imprimatur of acceptance, the other parts of the system fell into line as well. The D.A. opened his office to me so that its inner workings, the decisions behind who gets charged and who gets diverted and who gets to go home, were revealed to me as well. The probation department let me spend time in the street with their people.
I was in. My dream was coming true. Almost.
Then Stage 2 of the immersion process began. I call this the “How Long Are You Going to Be Here?” Stage, wherein all the people you encounter in those courtrooms and offices and hallways make it very clear they are not happy about having their comfort zone disrupted by an outsider with a court order and a new, clean notepad. This is the time when conversations stop when you enter the room. When you get monosyllabic answers to all your questions. Not from everyone, but enough to make you wonder if this thing is going to fly.
I’ve learned over time — after a couple panic attacks — that you have to be patient in this stage. Imagine it’s your home being invaded, like that family back in the 70s who let a film crew document their home life. I can’t believe anyone would do such a thing, but they did. There were no private moments. It wasn’t like having company over, when you’ve had a chance to make your home preternaturally clean, and you know to be extra patient when the kids spill grape juice or the rug because you know you can lower the boom when everyone leaves, and you can mask the fact that you often just let the dishes pile up in the sink because, who’s gonna know. But for this family, there was no respite — the every day stuff was fair game, when the beds aren’t made and you just want to lay on the couch in your raggedy tee shirt, or you are less than a model parent — and there’s that darn camera, recording it all. It was like that for me and the folks in juvenile court. Suddenly people had to wonder what would happen if they told an off-color joke or they’re ragging about their boss or sending an email home on company time. “Is the book guy gonna put that in his book?”
That’s what they called me, the book guy. What’s the book guy really after? What are yu going to put in that book, anyway? And then there’s always that question HOW LONG DID YOU SAY YOU WERE GONNA BE HERE? In other words, When ya clearin out, bucko?
Fortunately, time is the cure for this stage. You just lay low, watch and listen and stay out of the way, try not to be intrusive, don’t push the envelope on what you try to do. You just become part of the furniture. It’s not so bad, they figure after a while, having the book guy around. At least he doesn’t get in the way. And a little later, you become someone who’s okay to chat with a little. And pretty soon after that, you’re the one person who will actually listen and seem to care when they talk.
And then there you are, Stage Three of the process: Acceptance.
This is where the real meat of your research begins — where people just keep on saying what they were saying when you walk in, and its okay. You can interview when you need to, but mostly you can just hang out and take it in, and much of the time you will get unadulterated reality. You have paid your dues, you have become conversant in the language and rituals of the place. You know how they like you to dress and where they like you to sit, and you can begin to latch on to certain people who have been open to you and who have interesting roles to play and who, therefore, can help provide the structure for your narrative.
This is also the most dangerous time, because you have to be careful of the shifting relationships at work. You have stopped being the outsider observing, and are now being treated like an insider, at least to some extent. And with that access, there will inevitably be an unspoken assumption on the part of the people who are trusting you with their life stories: that you won’t burn them. That you will reward their trust by “taking care of them.”
Now, as long as you, the writer, make it clear that this caretaking is limited to treating your subjects with fairness, accuracy and a rigorous fact-checking process, I don’t think there is an ethical problem here. Your own conscience is your guide at this point. But if you fail to make clear — regularly and without equivocation — that all that you witness is fair game, the people who let you inside, who come to trust you, may feel betrayed. They may not understand that nothing is private when you’re around anymore.
I believe that the immersion journalist has a special obligation on this score. We have been admitted to the inner sanctum, not because we are entitled to be there, not because of public meeting laws or open records act. There is no way to get these kinds of stories by relying only on what is in the public domain. Yes, you are there with permission and yes, your subjects know you are a journalist, but these are the same people who believe their lives and jobs are boring. They don’t really accept that you see their stories as amazing and dramatic enough to fill a book.
People I’ve written about — the DA featured in No Matter How Loud I Shout named Peggy Beckstrand comes to mind — have told me they’ve been stunned when they read about themselves in my books. Not not because they see their portraits as inaccurate, but because they had never seen themselves and what they do through fresh eyes. That’s been mostly a good thing, to get that sort of feedback as a writer. I would add a word of very practical caution: Watch out when you call people “portly.” It’s not worth the trouble. There’s something about that word....
Now, once you’re inside, the plans and assumptions you brought with you — my advice: keep them at a minimum — often go out the window, and this is a good thing. Juvenile courts — and the kids I saw there — were not what I expected. A real breakthrough came for me when I visited juvenile hall and ended up interviewing the chaplain there, a remarkable woman named Sister Janet Harris. She was very good to me: She answered all my questions, suggested sources and gave me a tour of the rather castle-like central juvenile hall. When we were all done, she turned to me in her kindly way and said, “Now I want you to do me a favor. I want you to come work for me. I want you to be volunteer and teach a writing class in juvenile hall.” This is not something I ever imagined doing when I conceived of this book, but Sister Janet is not the sort of person you tell no very easily. So I agreed and I owe her a great debt because I was granted a window into the lives of these kids that I never would have gotten otherwise.
These are the kids who get no visitors, who are really alone at this point in their lives. I was able to see in them, and they were able to communicate to me, a very different perspective on the juvenile justice system from the ones debated in our legislatures and litigated in our courtrooms. If you’ll bear with me, I’ll just read you a little section from the book, that concerns this class, about a boy named Elias. I promise it won’t be too long:
Elias is reading to my class, his dark eyes fixed on the paper quivering in his hands.
These are the things I learned when I was growing up:
I learned how to take a spray can of paint
and write my nombre on the wall.
I learned how to make a Walkman’s motor into a tattoo machine
so that I could get my barrio on my arms and my neck ,
to show how much I loved my homeboys.
I learned how to sell the weed and the rock.
These are the things I learned when I was growing up.
The seven other boys in the class nod as Elias reads. There are fourteen and fifteen and sixteen years old, and he is describing their lives as well as his own, lives that brought them to Central Juvenile Hall not as mere delinquents, like most of the 1,600 kids warehoused here, but as HROs — High Risk Offenders. “We’re the monsters they talk about on the news,” sixteen-year-old Chris, a gentle-mannered robber of pizza deliverymen, told me matter-of-factly when I first started teaching the Monday night writing class two months ago. “We’re the ones you’re supposed to be afraid of.” I felt too guilty to tell him that I had, indeed, expected to find monsters when Sister Janet first led me to them. Hesitating outside the double-locked steel door to their unit, I had asked the Juvenile Hall chaplain rather nervously why she had chosen these kids, rather than some less hardened, more salvageable boys or girls, and, Janet had just smiled cryptically and said, “Because these boys need you more.”
Elias has a stoic strength about him, quiet and shy, in the past too nervous to read his work aloud. At first, he always has folded his eloquent essays on life in the streets into tiny squares of paper, passing them to me in silence so I could read them privately. Tonight, though, his anger has boiled up from the page and into the class.
When I was growing up, I learned how to take
another person’s car without a key,
how to drive it and sell it, or just leave it somewhere.
I learned how to sit down low
and look out the window for the enemy,
to see them before they saw me.
And, finally, when I was growing up,
I learned how to load bullets into a gun.
I learned how to carry it and aim it,
and I learned how to shoot at the enemy,
to be there for my homeboys no matter what.
“I hear you,” James says, an obvious longing for the street in his voice. He has just penned an essay on how he’d like to drive a car over his ex-girlfriend, and it is not entirely clear that he is joking. The kids, in their severe jailhouse haircuts and neon orange jumpsuits reserved for HROs, look pale and fragile beneath the hall’s harsh lights, a few of them nursing adolescent whips of mustache hair that only make them look younger. Yet, most of the boys in this room are on trial for thoroughly adult crimes — murder or attempted murder or armed robbery. They have witnessed and done terrible things. At the same time, these kids who could pull a trigger without a blink remain painfully timid about reading their work aloud, blushing, breathing hard, breaking a sweat just at the thought of standing before the class and baring themselves. Silence can claim the room like an advancing tide. Tonight, though, Elias, with his angry diatribe, is my unexpected hero. He has broken the ice.
And then this seemingly hardened gangbanger, this kid with the huge tattoo on his arm announcing his gang allegiance, “Sureno 13,” surprises everyone. His voice drops nearly to a whisper, hoarse and urgent, his words taking a new direction.
These are the things I learned when I was growing up.
But this is what I want to know:
I want to know who is going to teach me
how to pick out the right baby carriage for my little girl?
Who is going to teach me how to make up a bottle,
or to change a diaper, or to buy baby food?
Who is going to teach me how to be a father?
How to take care of my family?
How to live a life — a normal life?
These are the things I never learned growing up.
Who will teach me now?
When he finishes, the room is silent, not a cough, not a mutter, not a rustle of clothing, just the sound of Elias setting his paper down on the old Formica tabletop and, filtered through the room’s walls of metal, cinder block and safety glass with wire mesh imbedded within, the muffled jailhouse sounds of feet shuffling, toilets flushing, young voices competing with the television bolted to the wall of the common room. Elias’ eyes stay locked on his piece of paper. The sorrow and regret in his voice was so naked that the bravado and machismo that normally inhabit this room have evaporated like dew in the desert. Several boys are blinking hard.
None of them speak the answer to Elias’ yearnings, though all know it well. The answer is no one.
Elias has been in the system for years, without benefit or effect. “Probation isn’t worth shit,” he says. For him, it was token supervision, a monthly call to his PO, who had two hundred other kids to watch over. Elias never left his gang, as the judge had ordered, and no one noticed.... He just kept committing crimes. Nothing made Elias want to change — until three days after his arrest as an accomplice to murder, he learned he was to be a father. Then he craved responsibility, normalcy, a future. But by then it was too late.
Now Elias keeps tucked in his right sock a color snapshot of his daughter, his most treasured possession. His baby was born while he sat in Juvenile Hall, and she has reached the age of eight months without ever being held by her father. They are likely to remain apart a good deal longer. Because of the seriousness of his case, Elias will almost certainly be tried as an adult, with a lengthy sentence, possibly a life term, ahead of him. This is what it has come down to in Los Angeles’ juvenile justice system: life in prison for sixteen-year-old boys. Not just one or two or three like Elias, but hundreds of them.
“There’s no one you can bring in to talk to someone and make them change to make them not do crimes,” Elias says, when I ask him what the juvenile court could have done to keep him straight, “I honestly don’t think anything the system does is going to work. People have to change themselves. Like, for me, it wasn’t until I had my baby girl that I realized I wanted to change, to settle down. And now it’s too late.”
The words tumble out of Elias in a rush. In the space of fifteen minutes, he has spoken more than in ten previous classes, as if he was saving up his despair.
“God made me so that I could learn how to commit crimes,” he finishes. “What’s some judge or some probation officer gonna do?” I see he is looking directly at me now with those dark eyes, an old man’s eyes in a sixteen-year-old’s face, and I think at the time, as I do now, that there is nothing more sad than the sight of hopelessness in one so young. It is a look that seems, for a moment, to be reflected in every boy’s face in the room.
“God made me so I could do terrible things,” Elias says. “Why couldn’t God help me learn how to be a father?”
These kids gave me a gift: the gift of letting me be a part of their lives. A thousand hours in the courtroom would not have replicated that experience. Elias, just so you know, didn’t murder anyone. He was sitting in a car, in the back seat, when someone else pulled out a gun and shot randomly into a crowd. And someone did die. Whether or not Elias knew that would happen is unclear. But the law in such cases now makes that question irrelevant; whether he knew or not, the law says he is as guilty as the person who pulled the trigger, and he is today serving a life sentence without parole.
So, along with this intimacy, I found through my writing class some tough ethical considerations. Where did the volunteer end and the journalist begin? My solution here was to make it clear to the kids why I was there, that I wanted to volunteer, to give them my time, to work with them, but it was also understood that I would use my impressions, observations and time there for my book. Their perspective would be included, an idea they liked, these kids with no voice. And it they were okay with those conditions, they could take the class. If they wanted to be left out of the book, they just had to tell me, and they could still be in the class. It worked very well. We made our own lines in the sand, our own boundaries as we went along.
The obligation I felt while working on BABY ER was, if possible, more acute. Here, inside the world of the NICU, as it’s called, the most fascinating part of the hospital you’ll never want to visit, I was meeting families in crisis, at their most vulnerable. And there I was, dressed in surgical scrubs, per hospital regulations, looking more official than I would have liked, trying to learn and watch but not interfere.
As you might imagine, some interesting issues arose when the worlds of medicine and journalism collided: As much as juvenile court, hospital culture lives and breathes confidentiality, right down to those omnipresent signs in the elevators warning staff not to discuss patients in public. So I meet with the hospital administrator — here I am in the please, please, please stage again — and he wanted to know what were they going to get out of this. Why should they open the inner sanctum for me? And he wanted to know (this is a frequent question) who would have final say about what went on the printed page? Could the hospital have some control, some oversight over that? What about liability? What if I got hurt or sick? That sort of thing: What if I accidentally defibrillated someone? Was throwing open the doors to show the world what goes on in a world-class intensive care unit worth it for the hospital? What about when bad things happen, when kids die, will that go in the book, too? Was it really worth trading the obscurity that this remarkable place endured for possibly negative attention?
Personal ties ended up making something of a difference here, because I had an experience that gave me more than a little insight into the NICU. My own daughter, Gaby, was born at this same hospital seven years before I undertook this project. We brought her home and a day later, she developed an infection and had to go back — to this same neonatal unit, for seven days. It was the most harrowing time of our lives.
For those of you unfamiliar with NICUs, they are terrifying, loud, filled with technology and infants so tiny they appear unreal. When you arrive, you just think you are alone in the world, that no one understands what you’re going through or can imagine the pain of having to hand your little girl back to the hospital — or the fears of what may come. But after the initial shock wore off and it became clear our daughter would get well, that we just had to tide out a week of antibiotics, we could see the brand of medicine practiced inside this NICU was like no other we had heard of, extraordinarily kind, even amid the whirl of emergencies and crises that were continually spinning out around us. Can you imagine a part of a hospital where a nurse has only one patient to look after? Where you can lean over and talk to the attending physician any time you want? Because they are always there.
My pitch to the administrator was simple: You have a great unit, you do great things, you confront dramatic, life-and-death situations daily. You make a difference in people’s lives daily. You face scientific problems and ethical issues of great societal import daily. You are an invaluable resource in your community, and your medical specialty arguably has come farther faster than any other, with a 90 percent mortality rate for the most premature infants becoming a 90 percent SURVIVAL rate in the space of a decade. And yet, given all this, the general public has no idea what you do. One out of ten newborns in America are going to need the services of a neonatologist, and almost as many are going to be admitted to an NICU after birth, yet ninety percent of Americans couldn’t tell you what a neonatologist does. Most expectant parents couldn’t tell you what neonatal services are available at their maternity hospital should their newborn need them — or if any such services are available at all. Except for occasions when the media descends to cover some Guinness Record Book multiple birth, I suggested, you are the best-kept secret in the medical world.
This must have made sense to someone, I suppose, as the folks in the unit and the hospital administration eventually said yes, you can come in. But then, of course, it was time for the risk managers and lawyers to have their say. The risk managers were easy to placate: It basically boiled down to them not wanting to be liable if I got in the way and something bad happened, and I readily agreed. Getting out of the way turned out to fairly simple, because this was a teaching hospital, and the nurses there are very adept at dealing with uncertain medical students and keeping them out of the way. They just treated me like a very remedial medical student and it was no problem.
The legal confidentiality issues there were a more massive set of concerns, but we came up with a very elegant approach. Part of it involved me dressing like I belonged there because then I wasn’t disruptive. My presence there didn’t disturb people. Then the staff posted signs on every chart and on the walls of the unit saying there was an author observer on the premises writing a book, but that I would not be writing in any identifiable fashion about anyone without a family’s specific permission. I used very clear written releases when I asked for that permission.
I think there was something about this place and the care that was dispense there that created a comfort level that spilled over onto me. Virtually everyone I wanted to identify in the book said, “Yes. Tell our story.” This was very gratifying — and very scary, because of the level of obligation I began to feel to do their stories justice, without making their considerable anguish any greater.
And finally, there was the issue of control, which was an ethical consideration more than a legal one. I never knew until I spent quality time around doctors how much they like to control their environment. They wanted to read the manuscript before it was published. They wanted to have the right to dictate changes. I guess they wanted to be able to “cure” the book once it was laid out on the table. We journalists, on the other hand, are not very big on controlling the environment, but we do insist on controlling our words and so, that was just something I could not negotiate.
After explaining to them the ethical constraints journalists must observe on this score — and assuring them that journalistic ethics were not oxymorons — we came up with not a compromise, but a substitute for control: my written promise to employ a very extensive fact checking process. Not only for the medical and scientific information in the book, which was substantial, but the personal and biographical information as well. I had always used a fact checking process, but I had never really institutionalized and spelled it out in writing that way for sources.
So it turned out that their desire for control, even though they didn’t get it, was a boon to me because I now have a model process for making sure my work is accurate and fair to the people I’m writing about, to the best of my ability. And I have those controlling doctors to thank for it because I intend to use that process from now on. They were satisfied by that. It gave them the confidence to let me in the door. They knew they couldn’t control the actual content, but that their input and time would be rewarded with the utmost care.
With that hurdle completed, and the door opened, I was once again allowed inside a hidden world where the general public has no right to be.
As neonatal units go, this was a big one — there were 71 beds in it. There were different rooms where the intensity of care varied, from mere observation to constant life support. I spent a lot of time in the most intensive room. I took a kind of snapshot in time, on a day when there were twelve babies in that room, and followed them and their families over the course of the next four months.
At the end of that time, all twelve were gone. Eight of those babies went home in their car seats, and four of them didn’t. When I first walked into that room, I didn’t know, nobody knew, which babies would make it, even though there are statistics and probabilities of outcomes for each of the illnesses that afflicted them. The thing about this place is, those numbers don’t hold a lot of weight. Exceptions are regular, they’re routine, if such a thing is possible. The extraordinary is routine there.
I ended up using as a central theme the story of a young couple whose son, Elias, was born three months premature, followed by a three-month stay in the NICU. One of the interesting things is that a premature baby usually stays approximately until his or her original due date, no matter when in the pregnancy they are born, because it takes that long for nature to catch up with biology. I was there to see Elias’ dad race in from the delivery room, trying to find his new baby. I saw the look on his face when, in trying to get to the NICU, he ran by the picture window where the healthy newborns are. This is the regular nursery, where everybody’s standing and taking pictures and there are people holding balloons. And the look on his face told such a story, because he couldn’t stop there like all the other dads. He had been denied entry into that world. No, he had to keep on running past to find his son in another room, with tubes being thrust down his throat and into his body. Later, I was there when Elias’s mom was wheeled in on a gurney for her first look at her son, and, many weeks later, when she finally held him for the first time when he came off the respirator, and still later, when their hopes of going home early were dashed by one setback after another.
After the book came out, I invited everyone I had met in the hospital to a reception and a signing, the book party thing we always do. Elias’ parents were there, Elias was a year old then and was just healthy and doing great. It’s funny, that his name is Elias, too, like the boy in my writing class — I never even made the connection until now.
The parents whose baby had died after eight months, that I mentioned to you before, who had the funeral in Baby Land, also came. I had really struggled with their story and worried about their reaction.
The mom walked in and she told me how she had read the book and how she had read the passages about her daughter, Nikkol, many times. She had this really strange expression on her face when she was saying this, and I just felt my heart sink.
I dreaded what she was going to tell me, that I had compounded her grief, or I had gotten something terribly wrong. But then she just came up and hugged me. She said that they had decided, as hard as it was for them to read what had been written about them, that they had come to look at the book as a memorial for their little girl.
Then something really great happened. Her husband, who had been in the back, strolled up. I hadn’t really focused on him, but he was holding a baby — they had had a new baby. A year had gone by, a new life had begun. They let me hold him.
So, as you can tell, the responsibilities of this thing we’re calling immersion journalism are awesome. So are the rewards. Thank you.
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