Free Twelve Patients: Life and Death at Bellevue Hospital by Eric Manheimer

private hospital in the suburbs, or perhaps a bed had opened at one of the private hospitals in the city, maybe even McLean in Boston or the Hartford Retreat.
    “We want to thank you for the care our daughter has received on21 West.” Ariel Abeloff took the lead this time. Her face was different. It wasn’t frozen with fatigue and resignation.
    “Dr. Adrian spends hours with us. She patiently walked us through the entire course of Emily’s illness. The multiple diagnoses, the hundred and one treatments, and the one-inch stack of medications.” She paused for a moment and looked at her husband. “For the first time we have a handle on the issues both for Emily and for us.” I listened.
    “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