The last time I saw Merle was on her fifty-fifth birthday. I’d taken the train to Philadelphia for one more ill-fated attempt to convince my sister to move someplace cleaner and safer. With my hand on the familiar wrought-iron railing of my childhood home, I climbed the stairs under the beige steel awning with scalloped trim that was identical to all the other awnings over the doors of all the other semidetached row houses on the block. Merle peeked out the still-chained front door.
“They’re here, aren’t they?”
No, they weren’t. No, I hadn’t called the police. Nevertheless, Merle wasn’t taking any chances. She refused to open the door. I sat on the stoop, hoping she might change her mind. I wondered if I should force my way in but knew that would only lead to a confrontation even worse than those we’d had before my mom died. I didn’t want any more scenes.
The convalescent home I’d found was prepared to accept her, and on the phone, Merle kept saying she was nearly ready to go. “Next week,” “next month,” she told me throughout the fall. But some combination of her disease and her traumatic memories of being dragged to hospitals had left her afraid of doctors; she kept stalling to avoid the required medical examination. I wanted to keep my promise to my mother. I wanted to finally realize my lifelong goal to help my sister get well.
A month later, in November, I called and told her, “You will move out. Not forever. Just long enough to get help. Long enough to get the house back into some livable condition.” And maybe, I thought, long enough for me to get legal custody and have a judge rule that she has to accept treatment.
I wasn’t backing down this time. My mother was no longer around to yell at me. “I’ll make you.”
“You’ll never get away with it,” she screamed.
The arguments over the telephone continued into December—until she stopped picking up. For two weeks, many times each day, I would call, but no one ever answered. I had called Family Services in Philadelphia a month earlier, but it would take weeks for them to send an assessment team. I didn’t press them; Merle wouldn’t let them in anyway. Even if she did, who knew what they would find inside or how she would react. I worried that their arrival could precipitate a visit by the police. My parents’ lawyer advised me against involving the city officials in any way. He said that if Merle entered the “system” they might take over her life and seize the house. With no good options, I waited some more. But now, Merle wasn’t answering.
I finally dialed my brother-in-law Bob, Gail’s widower, who was the closest relative living in the area. Bob and I had always had an easy relationship. I thought of him as my smart, well-bred older brother. Over the decades of his marriage to my sister, I had come to value his perspective as someone who was close to us but had sufficient distance to maintain a useful clearsightedness that neither Gail nor I possessed. Bob had been an executive in the food business but in retirement, he had trained for his certification as a licensed social worker and provided psychotherapy at a local community mental health clinic. I had no doubt that he was the right person to call, and I was grateful to have him in my corner. I asked him to go to my sister’s house.
Bob called. He said he knocked on the front door, over and over; then he tried the back door. I knew what I had to do, despite every order issued by parents and relatives over a lifetime. Then I asked him to wait until the squad car arrived.
“The police need to break down the door,” he said when he called me back a short time later.
“Tell them to go in through the back door, the basement door,” I advised. “It’s the easiest one.” Then I held the line, looking at the emptied dinner plates while my family went about their evening routines. Across from me, my wife sat at her laptop preparing a lecture for her college English class, my daughter was doing homework upstairs, and my son and his girlfriend listened to music in his room.
As I waited, my head swam with memories. Merle had been my first playmate. She would curl up on the floor with me and our dog to watch television. She was the same sister who, just two months earlier, had locked me out of the house when I came from New York to celebrate our birthdays, which were only a few days apart. I thought about how as soon as I got my license at sixteen—the same age my son was now—I had dropped her off at the hospital and watched her get yanked in by the aides, the slam of the metal door echoing as she yelled back at me. I remembered the “best” hospitalization at the private Friends Hospital, where she’d received electroshock therapy. I recalled holding Merle’s hand in the limo after burying our mother. Just the two us in the car, we were the last remaining members of our family. As we passed the gravestones, she smiled and said cheerfully, as though speaking to someone else, “I have the most wonderful brother. He will always take care of me.” “Of course,” I replied. It was the closest I’d felt to her, and the most hopeful I’d felt about her future, in years.
“Merle is dead,” Bob said. “They found her in your parents’ bed.” He waited as the police investigated the scene and the coroner certified her death, but never entered the house. “I guess I didn’t want to see her lying in the bed dead,” he later told me.
The autopsy cited a heart attack as the immediate cause of death, with a breast cancer lesion, long undiagnosed and untreated, as secondary. But I knew the truth: what killed my sister was serious mental illness, complete with its accompanying shame, stubbornness, denial, and confusion.
I arranged a funeral. I gave one more eulogy, this time to just a few cousins, and buried the last member of my family of origin.
Left with the responsibility of cleaning out my childhood home, I decided to let it all go. What was I going to do with an out-of-tune, broken-down piano 120 miles from my home? Memories of delighting my mother and sisters with my attempts at honky-tonk weren’t enough to save it. I didn’t need the huge dining room table or the matching mahogany breakfront, still filled with dishes and silverware; it had been forty years since I’d turned on its display lights to show company what a fine home we had. Who needed the secretary that shelved the World Books or the books themselves, which I’d read over and over, cover to cover? The crystal chandelier, the wooden panels depicting medieval minstrels, the statuettes of the Venus de Milo. I wanted to put everything behind me. I hung on to the small metal menorah; the glass dish, stained brownish along the edges, in a metal cradle that kept the Rosh Hashanah brisket warm; and, of course, the family photo albums. When I was eight years old, I started my career as a documentarian. I decided to be the keeper of our beautiful family’s photo history. My parents stored the albums that I made in the bottom drawers of the secretary, along with important documents such as birth certificates. The photo books came out on holidays. They were the lifeblood of our family: who we were, or who we thought we were. How we wanted to be remembered.
On the first page of the first album, all five of us pose in the old house in a working-class neighborhood in Philadelphia. My parents sit side by side on the couch with infant me between them, my father’s large hands—the hands of a former amateur prizefighter—supporting his only son. He’s in a tweed suit and a striped dress shirt buttoned all the way to the top, and he wears the gold Art Deco watch that I would ultimately call my own. Beside him is my mother, a redhead whose smile and elegance, I still believe, rivaled Rita Hayworth’s. There in polka dots is my tall, slightly awkward sister Gail at age twelve. She smiles broadly, her hands on my father’s shoulders. Next to my mother, in an organdy dress and petticoat with puff sleeves and lace ruffles, my six-year-old sister Merle beams, confident and relaxed. It’s the least constricted and most self-possessed I’ve ever seen her.
I shipped those few things to New York. Then I was done.
When I began this project in 2012, I hadn’t set out to speak about my family even though my need to tell this story was set in motion in response to my personal experience. In fact, I am professionally trained in the art of avoiding self-disclosure. As a young psychiatrist, I was taught to remain circumspect about what I tell patients about my own life, views, and responses. My job is to understand and help my patients, not burden them with my own baggage. Yet I’ve come to realize that as a filmmaker, a writer, and now, unexpectedly, an activist, my obligation is to speak the entire truth. To hide behind a shield of detached professionalism is just another excuse to hide behind the veil of shame and secrecy. How could I continue to hide when I had spent the past seven years convincing Monte, Patrisse, Johanna, Delilah, Todd, Debbie, and Dr. McGhee to share their stories? To understand my story, I needed to go back home.
The first weekend of October 2017, the week of my sixtieth birthday, and what would have been Merle’s sixty-sixth, I take the train to Thirtieth Street Station, the stop where I always disembarked on what were, for a time, regular visits home. Bob picks me up and we drive a few miles to the grounds of what was once the Pennsylvania Hospital. Gone is the institution for people with schizophrenia, bipolar disorder, and other SMIs. Now, the old institute is divided into two parts: a beautiful rehabilitation center for substance abuse and a dilapidated homeless shelter used by the city to house families in crisis.
Turning off Market Street, we pull into the same driveway that I last saw forty-seven years earlier, during Merle’s first hospitalization. I am by no means the first person to journey up this pathway with no idea of what lies ahead. Back in 1752, Benjamin Franklin had cofounded the original Pennsylvania Hospital in Center City. Then, from 1836 to 1841, the stately buildings of the Pennsylvania Hospital for the Insane were constructed on 101 acres of farmland in North Philadelphia.1 When the facility opened, one hundred mental patients from the original Center City hospital were brought by carriages to the new asylum. From that day forward, people with psychiatric disorders traversed this same terrain, from the days of horse-drawn paddy wagons until the days of police vans like the one that brought Merle here in 1971. Families like mine followed until, in 1997—in an era of declining insurance payments, when treating serious mental illness simply didn’t pay—the nation’s first mental hospital, Merle’s first mental hospital, closed.
With permission from the rehab center’s management, Bob and I venture inside and find a room not unlike the one I’d sat in with my family at age fourteen, where the psychiatrist’s bike had hung on the wall amid shelves filled with books. We sit down in the refurbished conference room with high ceilings and white painted moldings at a long table ringed with half a dozen red leather chairs. Bob tells me how relieved he and Gail had felt when they’d arrived here with Merle in the police van. The psychiatrist they’d met with quickly took charge, explaining that they’d give Merle an injection to calm her down. Bob felt she was in good hands. “We thought we were doing the right thing up until your father called me,” he recalls. “He called me on the phone, he was so angry. He had never been so angry at me before that time. He was yelling at me on the phone. I was at work.”
Bob tried to reason with him. “I said, ‘Well, it’s just like if someone cuts themselves badly, you have to take them to the hospital. She needed the help.’”
“Never do that again,” Bob says, channeling my father. “You never, never do that ever again. Never. It’s my daughter and you’re not to do anything like that ever again.”
“Do you think he just didn’t want the situation to be out of his control?” I ask.
“I think with him, it was shame. I think there was a lot of shame regarding mental illness with him.” I learn that Bob and Gail had continued for years to urge my parents to get more care for Merle, but they wouldn’t hear of it.
I tell Bob about the few fraught family therapy sessions we’d had before my father pulled Merle out. I tell him about how I’d looked up to the psychiatrist and how I’d forged a solidarity with Gail—both of us allied around the idea that Merle was sick and needed help despite my parents’ denial.
Bob and I leave the rehab center and walk through the less maintained buildings that today serve homeless families. As Philadelphia’s largest nonprofit homeless shelter, the building provides emergency housing in sixty-five individual rooms and has case managers to help with health, education, and long-term housing needs. All across the nation, the sites of former asylums have been turned over to homeless shelters and jails. Dr. Torrey often mentions how the North Carolina mental hospital that reformer Dorothea Dix had founded in 1856 closed in October 2016 and was replaced by a jail on the very same plot of land.
As Bob and I drive through the city, I am reminded of all the good things about Philadelphia: the Parkway where Rocky ran up the stairs of the art museum, the diverse population, Pat’s cheesesteaks, and the trendy restaurants downtown. Still, ghosts appear. As we pass through Rittenhouse Square I remember driving the same route as a teenager, seeing a bag lady on the sidewalk, and realizing that bag lady was in fact my sister, roaming the streets in the throes of psychosis.
After lunch, Bob and I turn down my old street. When I was five, we’d moved here from a poor part of North Philly like the Beverly Hillbillies arriving at their mansion. My first glimpse of the long row of brick homes, each with its own driveway and little piece of lawn, felt like heaven on earth; and for a time, it was. It looks as homey to me now as it did when we pulled up the first time.
As we approach the house, Bob whispers, “It’s weird because I have so many memories with coming here. A lot of events, you know? Holidays, and dinners, and just so many things. And some unhappy things. You know? Pretty unhappy things.”
I have my memories, too. On summer Sundays, kids in the neighborhood darted through sprinklers and splashed in inflatable kiddie pools while adults lounged on postage-stamp porches or fixed their cars. One Sunday when I was eleven and Merle was seventeen, Dad was under the hood of his red 1967 Pontiac Firebird convertible, shirt off, soaking up the sun, tinkering. “Al, you’re always playing with your cars!” my mom would often jokingly complain, wanting more of his attention. But on this day, what she wanted from him was intervention.
From where I lay in a notch between the bushes in the front yard, sunbathing with one of those folding reflectors that were popular at the time, I could hear Merle ratcheting up, her high-pitched voice anxious, twisting, angling for a fight. My mother screamed back. Merle was asking for something and refusing to accept no for an answer. I tried not to listen. Then the hitting started. “Al! Al! Where are you?!?” my mother hollered. “Al, do you hear what’s going on here?”
Dad emerged from under the hood, engine still running, dropped his tools, swung open the screen door, and stormed through the house. Suddenly Merle burst through the door and ran down the front walk. I watched as she climbed into the driver’s seat. She drove down the street with the hood still up.
Whenever my sister was calm, the musical score in my head was Bobby Hebb’s song “Sunny.” But when she lost control, I heard Cream’s live version of “Crossroads,” with Eric Clapton’s frenetic guitar screaming over the pounding drums and bass. As the tires of Dad’s beloved convertible bumped off the curb, Clapton’s guitar licks screeched through my head. Children spraying each other with hoses stopped short. Sunbathing moms raised their sunglasses. The whole neighborhood gawked at the spectacle of the Rosenberg family’s red Firebird swerving down the street. Our insanity had finally bled beyond the walls of our house. I felt like Roy Scheider’s character in Jaws, when he realizes the shark will attack his son and the camera dolly zooms in just as his world collapses with the understanding of the terror that is about to unfold. For me, the terror was having my worst secret broadcast to everyone on my block.
A new family, immigrants from Eastern Europe, live here now. They’ve turned it into a warm home, decorated in bright reds and yellows, the walls hung with family portraits. They welcome us in and sit us down on the living room sofa. “Must bring back lots of memories,” says the family’s twenty-something daughter as her grandmother serves cookies and juice on a platter. “Brings back memories,” I answer. “Can I look around?”
In the living room, I lose my breath. It’s as if this family has found our old dining room table and breakfront and filled it with their own dishes and religious ornaments. In the dining room, I can still see us all gathered around the table for Jewish holidays, replete with toasts and blessings, my parents never happier, the welcoming sunshine of Gail’s smile, grandchildren gathered around the piano. Then, Merle making an appearance. On one of these holidays, I’d had my video camera fixed on her as she came downstairs, hands on the railing. “How are you?” she asked me. My mother exclaimed, “Oh, my. Wonderful!” I can still feel her tremendous hope that Merle’s long-awaited arrival at the dinner table meant that she was well, and we were whole once again.
Now, almost three decades later, hands on the same wooden banister finished with a gold ornament on top, Bob and I walk up the carpeted stairs. Around the corner in the upstairs hall, the bathroom looks like I remembered. This is where almost all of Merle’s fights had ended.
We enter the room that had been my parents’, and I flash back to the night in 2003 when Merle’s hoarding had overflowed from her bedroom and taken over the house. She had stacked the bed high with clothing. Crowded out of her own room, my sick mother, then in her late eighties, wound up sleeping on the sofa, during what ended up being her last days at home. When Merle refused to move her stuff, I had had enough. Just like my father, I was determined to fix it all by force. I grabbed the clothes so that my mother could lie down, and Merle erupted into a long tirade that ended with a howl. “Now you did it!” she screamed. Merle cursed me as I threw her clothes on the ground. “Now, you did it! The curse will continue with you!” she shouted, threatening that her demons would strike me next.
My mother reprimanded me, too. “You come from New York to make trouble!”
A few days later, my mother was hospitalized for dehydration. She died in the hospital.
Bob and I enter Merle’s room. Its walls have been painted a soothing blue-gray, the bed neatly topped with a geometric-patterned quilt. The screen in the window above the driveway is broken, the torn triangular corner dangling outside the glass. I look down at the smooth slope of the driveway three stories below, where I made my escape to Boston, forty years earlier.
I tell Bob, “I don’t really know how to make sense of it all, honestly.”
“There may be things you can never figure out, you know?” he replies gently.
I think back on all the patients I’ve spoken with over the years—family members torn apart by their loved ones’ illnesses, all those who faced the impossible task of stopping their loved ones’ unstoppable self-destruction, forced to fight with people who thwarted all their attempts at sanity and order.
In 2019, in the New York Times Magazine advice column The Ethicist, a mother asked if she could cut her daughter out of her life.2 “I am the parent of a high school student with multiple issues,” she wrote. “Her learning disabilities are dwarfed by a severe mood disorder. Nearly two decades of this severe mood has forced our family to endure daily, hour-long tantrums.” She listed a familiar litany of problems with neighbors and police, medication refusal, and the bedlam that had “battered our marriage and careers.” She described having “lost the middle chunk of my life to chaos and misery.” She asked The Ethicist, Kwame Anthony Appiah, “Am I condemned to live this way until I die?” Appiah responded, “Our culture demonizes parental ambivalence,” and advised the mother to seek psychiatric consultation.
I can’t fault Appiah’s response, but I know that even as a psychiatrist, I struggle to find answers. The best I can muster is what I tell Bob that day in my sister’s bedroom: “I know what my mother must have felt. I just cannot find words to make sense out of it, except to say it was a horrible illness, horrible for my mother. It was horrible for my father. It was horrible for everyone, and mostly it was horrible for Merle. I just wish there were a happier ending to her life, and to my entire family’s life.”
Before returning to New York, I have one more stop to make—one more place I’ve never wanted to visit: the cemetery where the bodies of my parents and Merle now rest.
I hate anything having to do with death. For as long as I can remember I had worried about being twelve years younger than Gail. It scared me that one day I’d be visiting my family in a place like this. All my life, I’d avoided even looking at graveyards. As a kid, I’d crouch in the back of the car behind the front seat whenever we’d pass a cemetery to avoid looking at it. But Bob knows cemeteries. After Gail’s death, Bob regularly visited the plot they’d purchased twenty miles away. He kept a steady supply of small rocks in his car from trips to Martha’s Vineyard where he and Gail had spent their summers.
When we arrive, Bob brings me to my parents’ grave first. Dad died in 1992. Buried next to him was my mother, who died in 2003. “Goes by fast,” Bob says, handing me a small rock to place on their headstones.
“Goes by fast,” I echo.
Then with the roar of the state highway behind us, he leads me to Merle’s grave a few yards away in a section empty of any other headstones. “She’s all alone,” I observe.
Her monument is inscribed with the words I’d written: “Devoted and beloved daughter, sister, cousin, aunt, friend. Forever in our hearts and minds.” I place a Martha’s Vineyard pebble on the smooth top edge.
“Aren’t we supposed to say a prayer?”
“The Kaddish,” Bob replies.
“Do you know the Kaddish?”
“I don’t know it by heart, no.”
“Do you know part of it?”
“Yitgadal v’yitkadash sh’mei raba b’alma di-v’ra . . .” he begins. “It goes on and on. . . .”
“Do you know what it means?”
“It’s just about saying you still believe in God even though, you know, bad things happen.” This marks the end of our day together. The sun is setting, and the orange rays highlight the grass and soil as the wind dies down.
I turn to Bob. “It’s really not bad here.”
“No, the sun’s coming right in over here. It shines right on your family’s grave right at this time of day. On a good day, it shines right on the graves.”
“Really? A good day is when the sun shines on the graves?”
With his hand on my shoulder, walking to the car, I felt the familiar warmth of family.
On my way back to Manhattan, I recall something Johanna said, with tears in her eyes, during our last interview. “When I first got sick, I remember how scared and alone I felt. It would have been nice to know that there are others like this.” She took a deep breath. “So, if you have this,” she said, addressing her message to anyone who might need it, “you’re not alone.”
We are not alone. But we desperately need one another. We need to share our stories. We need comradery and a unified movement. As many of us have found out the hard way, none of us can fix these diseases alone. None of us, rich or poor, can insulate and protect our family members from psychiatric disorders. I’ve met billionaires who are helpless to get their ill children out of jail. I’ve met the most powerful public health officials who have helplessly watched their siblings die on the streets. The richest among us can’t buy medicines that don’t exist; the cleverest person can’t find a bed in a hospital that lies in ruins; the smartest doctor can’t unravel the riddle of these poorly understood brain diseases. We can only solve this together, as an outspoken, unified, undeterred, and unashamed community.
The strength of that sort of community was on full display on February 12, 2019, when Patrisse Khan-Cullors and other activists including Dr. Dias protested at the Los Angeles County Board of Supervisors’ meeting under the banner of their group, JusticeLANow. Dr. Dias spoke out based on his twelve years in the trenches as LAC+USC’s director of psychiatry. He had dealt day in and day out with the mental health crisis overwhelming the hospital until he finally quit in 2017 out of concern that the stress was bad for his own health. (Dr. McGhee had also quit, one year earlier.)
On this landmark February day, Dr. Dias added his voice to the voices of dozens of other psychiatrists who attended the meeting of the County Board of Supervisors to demand that they halt plans to build the new mental health jail. To me, this jail had always seemed a foregone conclusion. When the project was approved by the Los Angeles Board of Supervisors in June 2018, it seemed like Patrisse’s hundred-bed protest in 2017 had been too little, too late. But she and other activists refused to give up. When the JusticeLANow coalition arrived at the meeting, they listened as none other than Los Angeles Department of Mental Health director Dr. Jonathan Sherin, Department of Health director Dr. Christina Ghaly, and Community Mental Health director Dr. Mark Ghaly spoke out against the planned facility. They heard Dr. Mark Ghaly say, “You can’t get well in a cell.”
That day history was made. Above a photo showing Patrisse among her crew of protesters, the Los Angeles Times headline read: “In Landmark Move, LA County Will Replace Men’s Central Jail with a Mental Health Hospital for Inmates.”3 They did it. The supervisors reversed their decision to build a 3,800-bed mental health jail in the spot where Men’s Central Jail now stands—the same spot where Patrisse had stood with a handful of ragtag demonstrators four years earlier.
This reversal was an inspiring piece of activism that happened because people joined forces to fight for viable and humane solutions. “I can’t stop crying,” Patrisse texted me hours after the vote. Without a doubt their tireless efforts had prevented innumerable tears that would have been shed by incarcerated people and their loved ones had the mental “health” jail been erected.
After the protest, I dreamed I was working in a small psychiatric emergency department, similar to the LAC+USC psych ED, only smaller. I was in the admissions and triage area, with a calm and dutiful doctor and nurse. No fighting and no restraints. It was like any small quiet ED, but for the fact that this ED was (somehow) an annex of Philadelphia’s 30th Street Station. I was called to the information desk in the heart of the train station. Merle was there with her suitcase, waiting. Standing tall, showered, and best of all, happy to see me, she was eager to be admitted, to get well. We smiled at each other. Then, as she took my hand, we walked toward the annexed hospital. No contests of wills. No yelling. No cursing. No battles. And, still in my dream, I thought to myself, “I finally found it: a happy ending!” Then I woke up and realized all over again that Merle was gone.
While there is no Hollywood ending for me and Merle, something unprecedented is happening now in America. We are no longer standing by helplessly as our family members get thrown away by society, without care, taking outdated medicines, living in cells or on the streets. We are no longer cowering in the corners. We are no longer silent. I am no longer alone.