Twelve Patients: Life and Death at Bellevue Hospital (8 page)

“We felt paralyzed and infantilized. Out of the blue, Emily would burst into a rage, cut herself, or threaten to kill herself. She was an-orexic and bulimic. Some of it felt contagious from other kids in her school. New symptoms, more doctors, additional tests and specialty referrals. We didn’t know what to do, or how to help her. We became passive and accepted all of the expert opinions. Even though many were contradictory and there was minimal communication among the therapists, if any. We felt we didn’t know anything and became more confused.”

I said, “We are overspecialized and now there is ‘plausible deniability.’ I mean, no one is in charge.”

“Things would be calm for a few weeks and we’d rejoice inwardly that we were finally on the right treatment plans, that we’d found the magic bullet, that Emily would get better. We kept an eye on her, and tried to help her and reduce tensions, often by giving in to her most ridiculous demands. ‘Why can’t I smoke pot in my room? It helps keep me calm.’
Oh, okay then
. Anything to keep her calm. ‘I need shopping therapy. It makes me feel better.’
Well, anything to make her feel better!
‘I bought a five-hundred-dollar dress on impulse. Maybe I have an impulse disorder. Or maybe mania?’ We felt powerless. Even the ‘remission’ was part of the illness. Then the next crisis would arise and the whole cycle of hospitalization, doctors, meds, and fear began again. We begged the doctors for a diagnosis. Wasn’t there some new pill we could try? Would she ever have a normal life?” She went on for a full fifteen minutes before she paused for a breath. I was dumbfounded. Here I was thinking that I would be called on the carpet for a litany of complaints, from the food to the lack of soft sheets on the bed. Her husband sat quietly and let her have the floor.

“For the first time in ten years, we have an honest interpretation of what happened to our family. We understand that while Emily has an anxiety disorder, let’s call it that, and has a very hard time regulating her emotions, a lot of her symptoms are learned. They can be unlearned. She became a grab bag of every imaginable disease. Labels were put on top of labels. She was kidnapped by the system. The medical system and the drug companies. We let her be kidnapped. We are going to get our daughter back. We understand it is going to take time and we have a lot of work to do here. We have to unlearn our reactions, too. We also get that we have been part of the drama. We know we are not innocents.” I thought about the cycles of actions, reactions, overreactions that Ariel Abeloff described, where no one had a footing. Who was leading whom in this dance? Parents losing their moorings as parents. A loss of confidence. I saw it clearly in some home visits with social workers in family therapy. Strengthening the parents to be able to parent and take back the home was a critical issue. Sometimes all of the agencies’ involvement and the threats of investigation or loss of their children eviscerated parental authority. Now who was in charge?

“It is also not simply a question of money. What is sold as the best care by reputation or well-meaning friends is equally confusing. We lost our common sense somewhere along the way. We were overwhelmed by the constant episodes and treatments. We took refuge in our careers—it was the only place where we felt some control. All this has had a corrosive effect on our relationship. John and I blamed each other—if only you hadn’t been so strict or if only you’d been home. Why do you take her shopping every time she wants something? Had we done too little? Or too much? We felt bad and guilty all the time. We have to get ourselves back as well.” She finished all at once and the room was quiet. I didn’t know what to say—or if I should say anything at all.

John started, “We came here out of desperation a few weeks ago. When Emily ended up at Methodist, our neighbor Glenn said he had emailed and then phoned you about a kid who had Emily’s diagnosis and treatments and asked what you recommended.” The “kid’s” case was not unusual at all. The feelings of helplessness are common, too.
A kid’s symptoms can be a proxy for both parents’ and society’s issues. Society and culture and genetics all create symptoms. “ ‘It is time for a time-out’ is what Glenn said you said. Figure out what’s what and whose job it is to control it.” The two of them had gotten it out and looked relieved, a lot different from my first glimpse of them sitting in the emergency room. It was going to be a long haul for all of them. But it was not hopeless.

I really didn’t say anything for the forty-five minutes they were in the office. A few mutterings, maybe a musing about experts and specialty knowledge. How tricky kids were as their brains developed. Every child manifested behaviors that could be called malfunction if we proceeded to medicalize every behavior. Is anorexia a psychological disorder or a social one? Is a child who is beaten or abused crazy if he bites back? Behaviors need to be understood within the larger pattern of the family and the society. Parents all make mistakes; that’s what parents do. But feeling guilty does not help. If anything, it makes everything worse. I walked them to the elevator bank, shook their hands when the doors opened. We agreed to talk some more.

Emily and Tani were from opposite poles of the universe. A product of abandonment at birth, Tani had ricocheted like a pinball around a system desperately trying to find a safe haven. In her sixteen years, she’d had a couple of loving experiences between forced death marches in enemy territory. Emily was picked up by a car service and driven to her private school, then sat down to dinner overlooking a backyard with a Bach clavichord playing in the background. And yet barely out of first grade she was melting down and unable to regulate her emotions. Her parents had desperately tried to find the missing love, the missed signals, the early intervention that might have changed the course of their history, all in vain.

Two social workers from child psychiatry, Ingrid and Ana Reid, were sitting in a booth sipping coffee when I sat down across from them. Ingrid’s description of Emily and her pedigree of doctors, diagnoses, and medications had led almost directly to the intrinsic problem—disentangling the skein that had enveloped the entire family. Illness, they would discover, serves everyone in a family; it focuses
attention and resources. The family seemed committed to understanding and working through that. Emily was being released tomorrow.

Then Ingrid turned to Tani’s case. She was determined if nothing else to make sure Tani did not have another experience in another foster home that reproduced the horror stories.

There was one glaring exception in Tani’s list of tribulations, and that was why I had asked Ingrid and Ana to join me for breakfast. They told me as they developed a file on Tani that when
Abuela
Lola died three years earlier after her long bout with breast cancer, the kids who lived with her and her husband had been picked up by ACS and scattered around Brooklyn. The husband had fallen ill shortly after her passing and been diagnosed with lung cancer. Within ninety days of Lola’s death—his other half of forty-plus years—he was dead himself. Their nine children were busy taking care of their own children, trying to make a living scratching something from the hardscrabble Brooklyn tarmac and concrete. One was a cop, another an electrician; a daughter owned a beauty parlor; and on and on.
Abuela
Lola’s eldest daughter, Lila—as Ingrid and Ana remembered—was the anchor of the entire group, in many ways the key. She had been sent by her mother to nursing school in Santo Domingo, the capital of the Dominican Republic, and then to New York City for a U.S. degree. With the earnings from her work at Maimonides hospital, she had brought every sibling to the city, and then her parents. The siblings all recognized her as the direct descendant of Lola, the matriarch,
la mera mera
. She was the chosen one and had earned both their respect and clan leadership.

“Why don’t we contact Lila. She seems like the real deal. Tani was a part of the family and maybe, just maybe she will be willing. Even better, maybe she will understand that this is Tani’s chance, maybe her only chance to become part of a family.” I was pretty emphatic, and they looked skeptically at me while picking at their scrambled eggs.

“Eric, you are dreaming. She is not a foster mother, she is not licensed, does not have any legal standing here for one thing. And obviously, why would this woman—three years after the death of her parents, with responsibilities for her children and grandchildren plus her husband, who works like a burro—take on a kid who is ancient
history?” Ana let me have it. “It is ridiculous, silly, and a waste of time.” I waited until she chilled out. Ana was rational, 99 percent correct in my experience, and utterly dependable. It did leave open the one-in-a-hundred chance that it might work out. I felt those were better odds than we’d find at a state hospital for zombie-eyed Tanisha. She certainly still had the life force. She was creative, was energetic, and had writing and art skills that showed insight and depth.

The odds were the problem. There would be attempts to violate her again under the right—or really, wrong—circumstances. She would kill someone or go down herself. You certainly did not have to be prescient to appreciate her depth of rage despite her successes on the unit. Her three-hour walk on a freezing winter night to the receiving center of the new ACS building on First Avenue proved her determination. She knew she would be held there safely, fed, and given some warm clothes. She also knew she would probably be sent to Bellevue for evaluation and admission. She had been taking it day by day. But not entirely. She had been counting on us to fight for her. She had done what she could to engage us in her battle. We were the only extended family she knew in the city. We were a safe zone—the most trustworthy thing Tani had going for her. We could not let her down.

I pulled out my black notebook and opened to a page where I had printed in large box letters “LILA!!!” And then “TANI????”

I stopped by to see Tani and the 21 West team at least weekly. The irony was that with the state hospital option on the table, the pressure to discharge was gone. There was a long line and fewer beds every year. Between cuts from Albany and a long-overdue move to bring kids in the juvenile justice system closer to their parents, capacity was shrinking. Tanisha might have to wait for a year. I brought her black notebooks with thin black ribbons to mark the page; some had blank pages for her drawings, some graph paper for writing. When a notebook was filled with her small fine handwriting mixed with sketches and full drawings in pencil or black ink, she would give it to me to read and to lock away so they wouldn’t get stolen.

I would go through them very slowly. It was painful to read them. Halfway through one book she switched into Spanish, rather than her
Spanglish or vernacular English. She entered into her other self completely. No shadow here lurking.
Abuela
had created the one safe and trusting space in her life. This wasn’t multiple personality disorder, but dissociation for survival. But here there was a kid with a life and a home—half of it imaginary, but all the more real.

Ana, my social work conscience, emailed me one day to call her as soon as possible. I broke off from rounds and found a quiet place to make a phone call. “Ana, what’s up?”

“Ingrid and I have talked to Lila Pagan, together. She wants to meet with you. She says she knows you. I will send you her cell. Sorry, you are the social work department now. We have taken it as far as it can go. Let’s hope that this is the one-in-a-hundred chance. Then it is 100 percent.”

I was startled and very jittery. This was too much for anyone, too much responsibility. I was used to all kinds of issues and trauma, death and dying, organ donor calls, blood, and cardiac arrests. The heart and soul of a teenager was something else. If I fucked this up, there would be no place to hide.

“
Señora Lila Pagan, soy el Dr. Eric del Hospital de Bellevue
.” Lila said she was a Dominicana who spoke poor English, was embarrassed by her English despite the decades she’d spent in Flatbush. “
Yo sé, Doctor, yo sé bien. Esperaba su llamada
.” She’d been expecting my call. We talked in generalities for a few minutes and agreed it was necessary to meet “
cara a cara
,” face-to-face. I told her I had a meeting in Brooklyn in two days and would be honored to visit her at her home if that worked out for her. “
Por supuesto, Doctor. Mi casa es su casa
.” Kings County had opened their new psychiatric building and I was getting a private tour from the director of psychiatry, a friend of mine. It had been a long time since I had worked in G Building—all the way back to the Son of Sam era. I could still recall the weight of the heavy key that let you into and out of the units.

Since I was making extra stops, I took my own car to Clarkson Avenue. I went on my tour then spent another hour catching up with my colleague in psychiatry, trading a little gossip and sharing some war stories. For lunch the burrito truck on the corner had the biggest
line so I made a beeline and ordered “
un poco de todo
”—a little bit of everything platter—sipped my Snapple, and decided to walk to Lila’s apartment, an easy twenty-minute trip in the bright sunshine.

The apartment building was well maintained and looked like a hundred others I had passed on the way. The area was slowly gentrifying. It had the telltale signs, with increasing numbers of the Haredi, ultra-Orthodox Jews, spilling over from Crown Heights and young women in skintight jeans pushing designer strollers speaking into the earbuds hooked to their iPhones. “The Bean” coffee shop sat comfortably adjacent to a Latino bodega. I could sniff the impending Starbuckification. Like a heavy hint of rain, you could smell and feel it before it happened.

I buzzed Señora Pagan from downstairs and was buzzed in immediately. The apartment was on the second floor of a four-floor walkup. A middle-aged woman greeted me with an open door, music filtering from around her, and an easy smile. Her hair was blond and the roots were gray. It was swept to one side. Her makeup and clothes were perfect. The living room was just as meticulous. I could see heavy wooden furniture, dark rugs, a TV off to one side, and heard several-generations-old
bachata
music on a CD player. I recognized “
Muero contigo
,” a classic tune by Rafael Encarnación, and remembered what Tani had told me about Lila’s mother. As she lay dying, she wanted the music on all the time, because she would dance in her head, even if she couldn’t move. Lila had looked after her and ensured that she was the center of the universe until she turned ashen and her skin was ice cold.