1.
Our Problem
Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
-Susan Sontag, Illness as Metaphor
Roger
When they look back now, fifteen years later, Roger's parents can scarcely remember how it all began. Roger was never an easy kid; he always seemed to be "wired different." As an infant he did not sleep through the night, as a toddler he was irritable, and when he entered kindergarten, he was less social than other kids, happily playing by himself. His fraternal twin brother, Owen, was the easy one. That changed when the boys were in elementary school. As their parents describe it now, when the twins were nine, Owen got diabetes and Roger got computer coding. Owen's diabetes required insulin injections, urine checks, and a full-court press at school and home to make sure his blood sugar was under control. Meanwhile, without any encouragement and almost without anyone noticing, Roger became an extraordinary coder. Python, a revolutionary computer coding system, had recently swept the computer world as the best language for games and graphics. Roger's father recalls, "He just seemed to understand Python. He would code for hours, often staying up much of the night, and even in elementary school he was getting paid for solving problems for new software companies." His being "wired different" at this age meant that Roger was brilliant, maybe like Bill Gates or Steve Jobs. Through a stretch of childhood, he was an online prodigy interacting with adults who never knew he was a kid.
When Roger became a teenager, "wired different" evolved into something terrifying. Around age thirteen (his parents aren't quite certain about the timing), Roger's obsession with coding disappeared as quickly as it had arrived a few years earlier. He still maintained intense levels of focus, but no one, including Owen, knew exactly how Roger was spending his time. By age fifteen, his grades, which had always been at the top of his class, began to slip and his few friends from middle school seemed to disappear. Thinking back on it now, his mother believes that maybe the first real warning sign was when Roger began attending church. Roger's parents were lapsed Catholics. What disturbed his mother was not the praying, but the insistence on getting to Mass exactly on time and sitting in the same pew. "There was a joyless, driven quality" to Roger's behavior that made both parents think something was wrong with their brilliant son.
By sixteen, Roger was online constantly. Although they did not know it then, they learned later that he had discovered the world of conspiracy theory websites. His focus had driven him deep into the universe of false-flag theories about 9/11 and the Holocaust. He spent hours following chats on Illuminati, a site that called for action to prepare the world for the return of Jesus. He found online an entire society of people reinforcing his growing paranoia. The same mind that could easily master computer code was now seeing conspiracies everywhere.
In the middle of his senior year of high school, Roger had a psychotic break, when he completely lost contact with reality. Inwardly, as he told me later, he felt more focused, more certain, filled with a sense of purpose. Outwardly, he had become unkempt for a few weeks, had skipped school, went nearly a week without sleeping. He had barely eaten for days when he marched out of his room naked to shout that everyone was in danger. "The CIA has been watching us! They are about to attack!" His explanation was difficult to comprehend, but it had something to do with voices, "alien voices," that had told him to remove his clothes and "walk the earth" to save his family from destruction. It was mid-January, and an unusual Georgia winter storm was in full force. For Roger's mother, it was his affect that was most unnerving. "His eyes were wide and unblinking. He could not stop talking." Nothing his parents said, no question they asked, no attempt at reassurance could penetrate his extreme agitation.
They are telling me this years later, sitting on the same couch in the same room where their lives changed forever during that freak snowstorm. Both professionals in their midfifties, they think of Roger's first psychosis, what they call "his break," as the lowest point in their lives. Roger's father, a lawyer, recalls, "It was so surreal. Scary yes, but so inexplicable. Could Roger have taken a psychedelic drug that made him crazy? Maybe, but he had never liked drugs or alcohol. And he had not been out of the house for days." They realized uncomfortably that this new behavior was just an extension of the distressing decline of the previous months. Their next thought was "How do we get him help?"
Roger was not interested in going to the emergency room or seeing a psychiatrist. He insisted, now yelling at his father, that the problem was not his fear but the real threat that they needed to do something about. At a loss for a better solution, and in some way playing into Roger's fear of an attack, Roger's father called 911. He regrets that decision now, but at the time, faced with a son who was irrational and agitated, he did not see any alternative.
When the police arrived, what had been a tense family situation became a clinical crisis. Thinking that the police were the CIA and that the feared attack was happening in real time, Roger ran for the door. Moments later he was on the ground, handcuffed, and carried off screaming obscenities as four policemen struggled to get him into the patrol car. The officers understood that Roger was psychotic, but from their perspective, he was also violent.
Emergency rooms are set up for trauma and acute health conditions such as heart attacks and asthma attacks, but for a seventeen-year-old gripped by paranoia, handcuffed to a gurney, and surrounded by strangers, the setting was adding fuel to the fire. His parents were there, but Roger thought they were not really his parents; they were impersonators who worked for the CIA. He talked nonstop, but only bits of what he said made sense to his parents. After three hours, a psychiatrist arrived, did a quick exam, asked a few questions, and recommended injections of haloperidol, an antipsychotic drug.
Roger's father recalls, "I assumed he would be medicated in the emergency room and hospitalized as soon as he was less agitated. But they told us there were no beds anywhere in the city. So we stayed in the emergency room for three days, sleeping in a chair beside Roger, who was still strapped to the gurney. We had gone seeking help but never felt more helpless." On the third day, Roger was transferred to a hospital about thirty miles away. By this time, after multiple injections of haloperidol, he was so tranquilized he could barely talk.
Roger's first hospitalization was for three days, only a few hours longer than his emergency room stay. He was diagnosed with schizo-affective disorder, possibly schizophrenia, and treated with risperidone, another antipsychotic medication. At discharge, he was better, in that he was sleeping and coherent, but he was far from well. He came home with three bottles of medication and stayed out of school for ten days. Soon he was sleeping, showering, and eating.
I knew Roger and his family as neighbors, not as patients. After his discharge, Roger's dad asked me if I would talk with his son. We met at the house and walked around the neighborhood for a couple of hours. At that point Roger was rail thin and just a bit over six feet. His hair was long, straight, and unwashed but not unkempt. His face was handsome, markedly so, in spite of some acne. My first impression was of shyness; Roger did not make eye contact and he did not want to shake my hand. So I was surprised by how talkative he became as we walked. There was a real sense of intentionality in his speech. In fact, he would stop walking to talk. And he seemed to experience the world unfiltered, so that a distant siren or a dog barking a block away were distracting to him. He still had bruises from being restrained by the police.
"The hospital was like a horror movie. There were people babbling all the time and someone was moaning all night, so I couldn't sleep much." Although he did not think of himself as ill, he described the previous weeks and his time in hospital as "pure terror." "I have been having a lot of stupid thoughts." That was his term for the voices, which he realized now were internal, even though they felt inescapably external and real. But now that he had been on medication, he felt these problems were resolved. I asked him what he wanted most of all. He thought for a long time, standing on the sidewalk in front of his house. "Peace" was all he said.
A week after leaving the hospital, a day after turning eighteen, and two days before returning to school, he stopped his medication. The drugs made him feel "slow and groggy." He didn't like the "stupid thoughts," but he really didn't like the way the drugs dulled his senses. Five days later, with the voices telling him to "walk the earth," he packed a small bag and left home.
When his parents found him a week later, Roger was living on the street, homeless and muttering to himself. As fearful as they had been a month earlier, now they were shattered. This was never what they had expected of "wired different."
And sadly, this is where Roger's story of acute psychosis turns into a journey toward chronic disability. During the next five years, Roger had five tours in the county jail, three hospitalizations for psychosis, and four emergency room visits after being assaulted on the street. He became a smoker and an alcoholic, but he has stayed away from opiates and methamphetamine. His possessions include a Bible, a bag of notes he has written to record his thoughts, and an umbrella and tarp he uses in the rain. He is homeless much of the time, but with the help of a social worker and funds provided by his parents, he has a room where he stays during the winter.
"We have tried to get him help, but professionals have told us over and over that unless Roger is an imminent danger to himself or others, there is nothing we can do," his mother tells me. "Of course we would care for him at home, but he does not want to live with us. For long periods we have not been able to locate him." As much as they dream that one day he will master these "demons" and return to the Roger they know, they live in constant fear that he will die before he's thirty, a victim of schizophrenia.
Meanwhile Owen, whose diabetes was once such a grave concern, is in graduate school studying neuroscience with a focus on the neurobiology of schizophrenia. His diabetes is now under exquisite control, and his care team includes an endocrinologist, a nutritionist, and a nurse practitioner. He has a continuous glucose monitor connected to an insulin pump that keeps his blood sugar within a healthy range. He thinks about Roger every day, and he imagines a time when Roger's illness will be treated with the same commitment and resources that helped him bring his diabetes under control.
The Crisis
This story, an integration of so many individual tragedies, is repeated nearly a hundred thousand times each year in America. While someone like Roger may end up homeless or incarcerated, there is nearly as great a likelihood that he will die from a complication of schizophrenia. Even those of us who know mental illness intimately may not think of it as fatal in the way that heart disease or cancer are killers. Usually when we see the words "mental illness" and "death" in the same sentence, it is to explain a homicide or a mass shooting.
Mental illnesses are, in fact, major killers, not by homicide but by suicide. There are over 47,000 suicide deaths in the U.S. each year, the equivalent of a mass shooting of 129 people each day, every day. That is a suicide every 11 minutes. Not only are there nearly three times more suicides than homicides each year, but suicide as a cause of medical mortality surpasses breast cancer, prostate cancer, and AIDS. At least two thirds, some would say 90 percent, of suicides result from depression, bipolar disorder, schizophrenia, or one of the other categories of mental illness.
Unlike other large-scale killers-auto accidents and homicides-suicide in the United States has been trending up, not down, over the past few decades. The homicide rate has fallen nearly 50 percent since the early 1990s. And although globally the suicide rate has dropped 38 percent since the mid-1990s, in America, by contrast, it has climbed steadily, from 1999 through 2018 increasing by over 33 percent. If we also consider drug overdoses and deaths from alcoholic liver disease, such deaths of despair became so prevalent in the U.S. by 2018 that they were driving overall U.S. life expectancy down for the first time in a century.
A startling 2006 report from the federal governmentÕs Substance Abuse and Mental Health Services Administration (SAMHSA) revealed that suicide was only part of the problem of mortality from mental illness. When the authors, Craig Colton and Ronald Manderscheid, scoured the death records from eight states, they found that people with mental illness in the public health care system (i.e., on Medicaid or Medicare) died fifteen to thirty years earlier than the rest of the population. The extent of early mortality depended on the state: people with mental illness died, on average, at age forty-nine in Arizona and age sixty in Rhode Island. Overall, life expectancy for those with mental illness across the eight states studied was in the midfifties, which means roughly twenty-three years of longevity lost.
The cause of this early mortality was not suicide. As Colton and Manderscheid note, "Leading causes of death for most public mental health clients were similar to those of individuals throughout the U.S. and in state general populations, especially heart disease, cancer, and cerebrovascular, respiratory, and lung diseases. People with mental illness have medical problems that lead to death, especially if they have inadequate medical treatment." While Roger's parents were concerned that their son would die early from schizophrenia, they had not yet reckoned with the probability of his death from pulmonary disease at age fifty-five. But the larger point is that people with mental illness are missing out on a century of medical progress that has extended life expectancy for Americans from fifty-five to nearly eighty years. In other words, in terms of life expectancy, these Americans are living in the early 1920s.
Copyright © 2022 by Thomas Insel, MD. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
