An excerpt from While You Were Out, Meg Kissinger’s memoir of growing up in a family ravaged by mental illness and her experiences as a reporter investigating the failings of a system.
When we were little, my sister Patty and I liked to pretend that ferocious tigers lurked in the space between our twin beds, just waiting to rip us to shreds. They stalked us at night with their razor-sharp fangs, growling and snorting and licking their chops. Dip a toe or a finger down too low and…SNAP!…they’d chomp it off clean to the bone. We’d bounce from one bed to the next, shrieking as we flew through the air.
Pipe down, you two, or I’ll come in there and beat you to a bloody pulp! my mother would yell from her bedroom down the hall. The invisible tigers scared us. Our mother did not.
Watch this, I’d whisper to Patty as I leaned over the side of my bed and slowly wiggled my fingers down into the pit. She’d poke her curly little head over the side of her bed and stare into the big black hole, nervously wheezing as she waited for one of the tigers to take the bait. I’d squeeze my eyes shut, imagining the hungry beasts skulking toward us, the smell of their musky fur filling my nostrils, and feel the thumping of my heart in the middle of my throat.
I said, “Pipe down!” my mother would call out, weaker this time.
We knew that she didn’t have the energy to beat us, much less into any bloody pulp.
My mother, an erstwhile debutante with a genius IQ, now spent her days rubbing ointment on babies’ blistered bottoms, wiping snot off our faces, plastering our cowlicks with her spit, and dripping warm medicine into our oozing, infected ear canals. She stuffed our lunch bags with peanut-butter-and-potato-chip sandwiches as she helped us conjugate Latin verbs, folded laundry while she quizzed us on our multiplication tables and typed our term papers between bouncing a baby on her lap and ironing our uniform blouses. Her own mother was dead and she had no sisters, so it fell to my mother to raise her eight children more or less by herself while my father was out of town most of the week on business.
My father, Bill Kissinger (we called him Holmer), sold advertising space to companies that manufactured tranquilizers and other so-called ethical pharmaceuticals to harried mothers of the baby boom. Business was brisk, especially in our North Shore Chicago neighborhood, where women, a great number of them Irish Catholics like my mother, were expected to fill the pews with as many children as they could bear, whether they had the stamina or not.
A family’s struggles
Our father’s sudden mood changes and our mother’s melancholia made us tense, like little deer teetering through the forest, vulnerable and unprotected. We fretted that the tigers could come bounding toward us at any second. Or, maybe, they’d creep up on us slowly, slinking through the glades, as tigers often do.
We wanted to be good. We tried our best to be brave. Once, we dared ourselves to fall asleep holding hands over the Tiger Pit. But we never stopped worrying about the beasts that we imagined swirled between our beds. We knew we were no match for them, and we dreaded the day that they would rip us apart. It seemed like only a matter of time. Indeed, one day, the tigers did come.
They were not real tigers, of course, but a menace just as ferocious, with power just as deadly. They scratched and clawed until they made mincemeat of us all. Some in our family were devoured from head to toe, never to be seen again. A sister, ripped to shreds and swallowed whole. Then, years later, a brother, snatched before our very eyes. We could see it happening. We just couldn’t do anything to save him. Or maybe we were too scared to try.
Those of us who were left tried to hide. But the beasts were relentless. Just when we thought we were free, one would spring toward us. And then another. And another. Eventually, we were all mauled and mangled. No one escaped unscathed.
In time, we learned that if we were to survive, we couldn’t just shiver under our covers the way Patty and I used to. We’d each have to figure out a way to fight back, wrestle those f–ers to the ground, pound them into submission once and for all.
If not, they’d surely come back and get us, too.
* * * * * * * * * * *
A young reporter follows the story
In headlines and news copy, we call them “the mentally ill.” In truth, they are our mothers and fathers, our brothers and sisters. They are us.
The National Institute of Mental Health estimates that fifty-three million Americans, or one in five, struggle with some condition that affects their mood, thinking, or behavior. Most have mild forms of mental illness with symptoms that come and go. Often they find relief with medication and therapy.
My focus was on the much smaller subset of this group, the 5.6 percent of adults who suffer from serious and persistent mental illness. Like Nancy and Danny and Jake, they may be intellectually sharp but have functional impairments that substantially interfere with their ability to take care of themselves. Their thinking is clouded. They get confused easily. They’re often overwhelmed. They may have a hard time sleeping, making decisions, holding a job, staying in relationships, making their own meals, paying their bills, and caring for other basic needs. Some are not able to separate fantasy from reality or even recognize that they are sick. Their illnesses are chronic, meaning a lifetime of struggle.
As I plowed through the letters and phone messages that readers sent after my story about Danny’s suicide, I learned how people with these crippling illnesses – major depression, schizophrenia, bipolar illness – are cast aside, ignored, even vilified. I knew only too well how we tend to blame them – or their families – for their sickness, as though they brought it on by some moral failure.
We claim to have a mental health system in this country. But that’s not true. A system is defined as a “set of things working together,” and, as I saw through my reporting and as a family member, very few things work together to help people with mental illness. More than one-third of all people with serious mental illness don’t get treatment.
We don’t have enough doctors. Many psychiatrists will only treat those who can pay directly. They won’t accept Medicare or Medicaid. Even with parity laws, insurance companies won’t pay many mental health claims.
People with serious mental illness can’t find landlords who will rent to them or employers who will give them steady jobs. A person with serious mental illness is ten times more likely to be incarcerated than hospitalized.
Jails and prisons have become the nation’s de facto mental health hospital system. The Cook County jail, where Danny spent four months, is now one of three of the largest mental health facilities in the country. More than a quarter of the nation’s 559,000 homeless have a serious mental illness. Their average life span is ten to twenty years shorter than the general population.
Yet this kind of prejudice and discrimination is allowed to fester because the aggrieved are either too embarrassed to speak up or we choose to ignore them.
That was the story I wanted to tell: the scandal of how millions of America’s most vulnerable people are being abandoned by the very institutions designed to protect them. Government agencies, police, schools, the insurance industry, hospitals and health care providers, even religious organizations, all turn a blind eye to so much of the suffering.
I had no shortage of people willing to tell me how the system had failed them in heartbreaking ways. Kathy Weigl kept boxes of three-ring binders filled with thousands of pages of documents showing how the army had bungled the care of her son James, a goofy, lovable Iraq War soldier who had two disabling conditions that should have disqualified him from enlisting. When he started to struggle, his supervisor berated him as “weak.” When he took a leave of absence after trying to kill himself, the supervisor told the others in James’s unit that they’d have to work harder to make up the slack.
A year after he was discharged for depression, James hanged himself in his garage.
Helen Kriewaldt would call me drunk, once at 3 a.m., wailing, as she recalled how her son, John, thirty, died after hitting his head in the back of the police squad car on his way to the psychiatric emergency room.
“I shouldn’t have called the cops on him,” she cried. “They didn’t know how to handle him right.” But what else could she do? John had been out of control that night, throwing furniture around the house. She was too small and thin to stop him, and nothing she was saying would calm him down. “I killed my son,” she sobbed.
Yvonne Panetti thumbed through the pages of her son Scott’s baby book, looking for evidence of how his life took such a wrong turn. Scott was on death row in Texas, waiting to be executed for killing his in-laws while in a psychotic trance. Scott’s wife had tried to turn his guns over to the police the day before, but the officer refused, saying, “Ma’am, a man’s guns are sacred property.”
“This one turns my blood cold,” Yvonne said, pointing to the photo of a 5-year-old Scott in a cowboy costume, guns in both hands.
Listening to these mothers and dozens of others was excruciating. But if my reporting was going to show how our institutions had failed them, I’d need to provide the evidence, comb through medical records, sit in their childhood bedrooms, see their Boy Scout badges and homemade Mother’s Day cards, and imagine what their lives could have been if they’d gotten the help they needed.
As I traveled across the country, I discovered how my family’s struggles were eerily intertwined with pivotal moments in the history of America’s fractured mental health system.
We Kissingers had come of age just as failed federal reforms were ushering hundreds of thousands of the sickest patients out of institutions and onto the streets. In the name of civil liberty, we traded one outrage – the warehousing of our sickest psychiatric patients in conditions unfit for animals – for another, deserting them to suffer alone.
Deinstitutionalization was solid public health policy.
If only it had worked.
Before sedatives were developed in the late 1940s, patients like Danny and Nancy, with extreme forms of mental illness, were housed in large psychiatric facilities, often run by the states, located on the outskirts of town so that no one needed to see or think about them.
But when Thorazine was developed in the late 1940s to battle nausea and allergies, doctors realized that the drug also had a tremendous calming effect. They began using it to sedate patients with psychosis so that they wouldn’t need to confine them with straitjackets or shackles. Nor, for that matter, would most of them need to be kept in institutions, unwieldy to manage and expensive to maintain. The federal government began considering alternatives for the more than 560,000 severely mentally ill Americans who were living in psychiatric hospitals.
Not all these institutions were snake pits, of course. But many of them were. For the most part, they were hidden from view until a group of conscientious objectors were assigned as orderlies in state mental hospitals during World War II. The orderlies were shocked at the sight of patients who had been crammed into decrepit, overcrowded quarters, beaten and chained to their beds. Some patients were naked and emaciated, covered in feces or bedsores or both. The orderlies leaked photos to journalists whose exposés described the scenes with graphic precision. Their stories read like pages of gothic horror novels.
Albert Q. Maisel’s 1946 Life magazine report, “Bedlam,” and Albert Deutsch’s book Shame of the States, published two years later, pulled back the curtain on ghastly, inhumane treatment. The photos recalled images that readers had seen of the people rescued from the Nazi concentration camps just a year or two earlier. Ken Kesey’s book One Flew Over the Cuckoo’s Nest, a fictional account of the cruelties he’d witnessed during his time as an attendant at a state psychiatric hospital in Oregon, came out in 1962, stirring public outrage to the boiling point.
The next winter, President Kennedy, whose sister Rosemary was institutionalized alongside my uncle Johnny in Jefferson, Wisconsin, proposed the Community Mental Health Act of 1963 to federalize mental health care.
“Almost every American family at some stage will experience or has experienced a case of mental affliction,” the president said, urging Congress to act. “We have to offer something more than crowded custodial care in our state institutions.”
When carried out, reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability.”
president john f. Kennedy, address to congress, feb. 5, 1963
The federal government would take on oversight of people with mental illness from the states so that care could be standardized. The plan was exquisitely simple: divide the country into catchment areas, like mini congressional districts. Each area would have its own mental health authority to oversee the various levels of care. Hospitals would serve the very sickest. Outpatient clinics would be available for those who only needed therapy and their medicines dispensed. Each catchment area would provide community services like classes on coping skills for battling anxiety and wellness checks for new mothers struggling with postpartum depression.
“When carried out, reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability,” a smiling Kennedy proclaimed. The bill passed with overwhelming support, 72-1 in the Senate and 335-18 in the House. At last, the era of better mental health care had arrived.
Or so everyone thought.
Three weeks later, Kennedy was killed by an assassin in Dallas. The Community Mental Health Act would be the last piece of legislation he would sign. The handsome young president was not all that was lost that day. A great deal of enthusiasm and political momentum for mental health overhaul died with him.
With the public attention now fixed on the assassination, the war in Vietnam, and burgeoning civil unrest, the needs of people suffering from severe mental illness were all but forgotten. Two decades later, Jimmy Carter did his best to restore enthusiasm for reform, championing the passage of a 1980 bill that provided federal grants to community mental health centers. But when Ronald Reagan won the presidential election later that year with the promise of getting the federal government off ourbacks, his first act was to push for a repeal of the bill, which Congress did.
In the end, fewer than half of the mental health centers pledged by the federal government were built. “We blew it,” said the director of Milwaukee’s mental health center.
The onus of care was back in the laps of the states. The states, in turn, foisted much of the responsibilities onto their counties. Funding for mental health care – provided by the federal government and filtered through grants to the states now had to compete with road repairs, park upkeep, and dozens of other more popular constituent demands for county officials’ attention and resources. The quality of public mental health care depended largely on which zip code you lived in.
A tiny band of do-gooders and distraught family members would show up at county board meetings and advocate for the needs of people with severe mental illness. But most weren’t willing to say anything at all about the needs of their suffering relatives to even their closest confidants, prejudice against people with these illnesses being what it was.
In the end, fewer than half of the mental health centers pledged by the federal government were ever built. “We blew it,” the director of Milwaukee’s mental health center told me.
At the same time, more than 93 percent of the treatment beds once available nationwide were eliminated. People with catastrophic mental illness were now left to fend for themselves. Many ended up in jails or prisons or living on the street.
John Spoerl pulled back the branches and showed me his favorite spot to sleep. It’s on the east side of a berm overlooking a state highway. “You have to be careful,” he told me. “There’s a guy around here who will stab you if you piss him off.”
The longer I followed John and others like him, the more I could see the relentless torture of their illnesses and how their families, like mine, suffered alongside them.
It was the year 2000, three years after Danny’s death, and I was working on a story about the history of deinstitutionalization. Over the next twenty plus years, I would look to John and others like him to help me figure out how the system had failed them and what we needed to do to provide better care.
There was vomit on John’s jeans from a crack binge the night before and a urine stain that hadn’t quite dried yet. His jacket was torn, and his fingernails were black from the dirt jammed underneath them. He smelled like rotting apples, cigarette butts, and sour milk. The scar that ran down John’s neck was a souvenir from a fight he had thirteen years earlier with his neighbor. The man demanded that John give him his last beer. John refused. In the scuffle, the man pushed John from the second-story window of their rooming house to the concrete slab below. The force of the fall caused John’s spleen to burst. His feet were cut to shreds. He spent six months mending.
John talked in a deep, round voice that sounds like a tape recording in slow motion. His jaw was clenched and his steel-blue eyes darted from side to side. John loved the freedom to come and go as he pleased, but this scared his mother, Pat.
“It’s nice to talk sweet talk about recovery, but the truth is some people, like John, will never be able to look out for themselves without getting into trouble,” his mother told me. Her words struck me as harsh at first, but I knew she was right. I’d seen how John and so many others lived.
“I actually like it outdoors,” he said with a slight smile. “The stars are so pretty. But it gets cold.”
His teeth were brown from tobacco, cracked and ground down in the back. “He hasn’t brushed his teeth in ten years,” his mother said.
John took a drag from his cigarette and considered which was worse: to be in danger, as he was on the streets, or to be held captive in a locked hospital ward. “Either way, I suffer,” he said.
The longer I followed John and others like him, the more I could see the relentless torture of their illnesses and how their families, like mine, suffered alongside them. For every person with severe mental illness, there are dozens of others whose lives are upended by their disease.
Pat and her husband, Joe, had three other children: Joe Jr., a philosophy professor; Margie, a physician; and Joanie, an education specialist. It would be hard to find a more resourceful, loving, and concerned family. Well into her eighties, Pat was one of those who showed up regularly at county board meetings pleading for more funding. She helped found the Milwaukee chapter of the National Alliance on Mental Illness, an advocacy group originally formed to help families navigate caring for their once-institutionalized children and siblings. Each of John’s siblings advocated for his needs. Even so, John was in and out of jails and hospitals his whole life.
John died of COVID in January 2021 at the age of 61. If the Spoerls couldn’t shield John from the ravages of his mental illness, who could? I understood their frustration as my own family continued to struggle.
