When I asked my brother Max, now 33 years old and worn wiser from 12 years of living with severe paranoid schizophrenia, his thoughts about the Newtown shooting, he said, "The world would be a better place without mental illness, but that's not the world we live in."
In any given year, one quarter of all Americans -- 52 million people -- suffer a diagnosable mental disorder, including anxiety, depression, bi-polar, schizophrenia and post-traumatic-stress disorder. Mental illness looks like all of us. Like cancer or heart disease, mental illness cuts across social, economic and ethnic divides. It's not just the homeless. It's Mike Wallace and Catherine Zeta-Jones and Terry Bradshaw (not to mention Beethoven, Churchill and Abraham Lincoln). It's thousands of veterans returning home from Iraq and Afghanistan and first responders to 9/11. It's my brother.
While in an un-medicated, psychotic state, my brother has jumped from moving cars to avoid involuntary hospitalization. He has threatened to harm himself and the people he loves most. He has been preyed upon by people who saw his illness as a money-making opportunity. He has been mistreated by police officers who mistook his illness for defiance. Out of fear, he has been unwelcomed by his community, his friends, his family.
Although Max expressed fear of being lumped together with violent murderers, he asked me to share our family's story as a means of bringing focus to a long list of potential solutions to events such as the Newtown tragedy. (He, however, didn't want me to use his real name.)
Before I do this, it's necessary to first point out that the NRA's call for a database of 'monsters,' among other hideous suggestions that assume that events like Newton can be prevented by merely keeping guns away from people with mental disorders, is both unrealistic and unhelpful to finding real solutions. Regardless of your view on gun control, we would all be far better off if we collectively understood the basic truths about the intersection of mental illness and gun violence...
· A 2010 research report by the Journal of the American Psychiatric Association found that "only 3 percent-5 percent of violent acts are attributable to serious mental illness, and most of those acts do not involve guns." This echoes a 1999 U.S. Surgeon General report, stating, "The overall contribution of mental disorders to the total level of violence in society is exceptionally small."
· Federal and many state laws already prohibit "adjudicated mental defective" persons from purchasing a firearm, based on an FBI-based background check at the point of sale. Based on the law's vague language and spotty implementation, however, its overall efficacy has yet to be determined.
· The Tucson and Aurora shooters were able to freely purchase their guns; neither had a mental health history to trigger the ban.
· Adam Lanza had ready access to his firearm, although his prior Asperger's diagnosis would not have stopped him from purchasing one.
· Point-of-sale laws are further hindered by the fact that 40 percent of gun purchases are made from unlicensed private owners (and therefore not subject to background checks).
The best way to prevent gun violence is to apply stricter laws for everyone. Isolating people who are battling a mental illness - and potentially promoting fear or shame of getting help - is not the answer.
This said, so much can and needs to be done to take our mental health system out of the dark ages and make improving it a national priority - at the very least, making it at least as easy to access proper mental healthcare as it is to buy an assault rifle today. The top three fixes:
1)Address the lack of quality, accessible and affordable mental health care.
In the past 12 years, my brother has been hospitalized more than 20 times in seven different hospitals across three states. He has routinely been discharged before he was stable, and returned to care weeks later in the hands of police officers. Before discharge, my parents and I are often fully aware of his plans to throw the medication in the nearest trashcan as he walks out the door, and yet, most doctors have generally been uninterested, unwilling and/or too time strapped to return our messages.
Max has been held in temporary mental facilities ("holding cells" is a better term) for extended periods while awaiting a hospital ward bed where he could receive proper care. He has been transferred from hospital to hospital to make room for incoming patients. He has lived in outpatient rehab facilities and board-and-care homes that were cold, dreary, filthy and smelly enough to make me weep in horror and grief at the idea of the little brother who I once shared a bunk bed with calling it home. But, as one of his social workers once explained to me, "There is no other place for someone like your brother."
Max is a veteran with VA insurance benefits. I can only imagine how many times our experience would be magnified in the public health system.
Over the past four years, states have collectively made the largest cuts to mental health since de-institutionalization in the 1960s and 1970s. Withimprisoned mentally ill inmates quadrupling from 2000-2006, 'de-institutionalization' has been anything but. We've simply swapped one failing system for another, allowed by public fear, ignorance, and indifference, with "woefully ill-equipped prisons" attempting to meet the basic needs for thousands of petty crime offenders with nowhere else to go. As of 2009, the rate of inmates with illnesses as schizophrenia, bipolar disorder, and major depression were absurdly two to four times higher than the general public.
We need funding for a wide range of services - from hospital beds to housing to rehabilitation services - and better oversight over all of it.
2) Change the law to more easily help an adult loved one get involuntary care when they desperately need it - before anyone gets hurt.
We must begin fill the gaps in the mental health care system that could have potentially helped to prevent recent massacres at the hands of people in need of psychiatric intervention. Studies show that early intervention greatly improves the prospect for recovery. In my own experience with my brother, a first dose of anti-psychotics during a psychotic episode palpably reduces paranoia and hallucinations.
A few years ago, Max went off his medication, barricading himself in his apartment and warning his family to stay away. In an extremely psychotic state, he plastered the Web with terrifying words and images, predominantly aimed at the people who love him most. While punishing to read, as the time and severity of his symptoms wore on, his posts became our only proof that he was still alive - our only hope that he could still get help.
For two months, my parents and I campaigned the local police to knock down his door and get him to a hospital. My dad became a fixture at the police station. We sent the police chief Max's blog and threatening emails. We explained his diagnosis, his years of involuntary hospital commitments and dire need for care before he did more permanent damage to his brain. His neighbors also called the police to complain. The police went to his house multiple times but said they didn't have cause to forcefully enter. Their response was always the same. "We understand that he's very sick, but what has he done? Call us when he'sdone something and we'll pick him up."
When in his right mind, my brother is one of the most gentle, generous and loving people I know. And, while he doesn't own a weapon, he is a trained Marine. Before his mental break, my dad once watched Max load an assault rifle with his eyes closed.
And so, helplessly furious, we nervously waited. We wrote our representatives. We supported organizations like NAMI. We began the process of getting power of attorney over him against his will, a process we knew would take far too long before something might go very, very wrong.
It was winter in Texas. Max attempted to purchase a jacket at a Wal-Mart, but his inability to write a check (due to severe hand tremors - a side effect of years of anti-psychotic medication) resulted in a misunderstanding at the check stand, and Max being handcuffed by a security guard until police arrived.
My dad reported that he looked like a shadow of himself, having lost about 75 pounds and his face virtually unrecognizable behind a tangle of hair. He had trashed his apartment in rage and fear. He'd spent a substantial sum buying useless items online that he couldn't afford. All of his bills had gone into collection. In cleaning all of this up, we discovered that he had retrieved a passport with the aim of to permanently disappearing, from, in his view, a never-ending cycle of forced emergency treatment by authority figures, followed by no more than a well-intended "good luck out there" by his hospital social worker of the day.
This is just one of many of my brother's psychotic episodes that could have been avoided by early intervention. It only takes a few hours of him missing a dose of meds before we see the signs. Yet, often for weeks or months, there is nothing we can do.
Males with schizophrenia most often become symptomatic in their late teens to early 20s. From a legal standpoint, parents hands are often tied trying to get help for their sick child who is of legal age, with the current standard of "danger to oneself or others" far too hazardous.
The "dangerous" bar is too high to get someone with acute psychotic symptoms care when they need it most - and when they are the largest threat to themselves and, potentially, their family and community. Why should it not instead be a standard of gravely disabled - unable to care for oneself or for others? Surely, if the police could have somehow glimpsed at him and his apartment, they would have immediately seen that he was unable to care for himself.
We need to change the law, and create a mental health workforce working alongside officers and families to provide more proactive, onsite assessment of people who are credibly unable to care for themselves -before it gets to the point of "dangerous."
3) Early detection, reporting and accountability for action.
While fighting social stigma can sound like a fluffy request amid a list of urgent necessities, Virginia Tech is a great example how a broad cultural awareness of the symptoms of severe mental illnesses,together with a duty to report (which occurred by a professor in this case) followed by accountability for swift action (where there was none at Virginia Tech) could have been potentially life-saving.
Schools are uniquely positioned to detect mental illness: approximately one fifth of the U.S. population passes though a school on any weekday. High school and university campuses are where most teenagers/young adolescent males spend the bulk of their time - the population most at-risk of a first-time mental break.
We need awareness campaigns on school campuses and workplace trainings about what mental illness looks like (as well as what it doesn't). We need to end fear and misinformation and educate ourselves as responsible members of society, believing that "we are more alike than unalike," as Maya Angelou once said. If we can compassionately embrace people who may be suffering, we may be able to prevent a tragedy before it occurs.
Hope
Despite his illness, Max is, in many ways, still the 20 year-old best friend I remember before his first break. It is his big heart; his piercing intelligence and humor that give me hope that he'll someday be able to share these gifts with more people who can love and respect him for who he is.
He told me today, "Every day I look at a flag outside my home that says 'thou art not forgotten,' and I believe it. You have to have hope, because there's no use in having all that anger."
Now in his mid-thirties, Max still cycles in and out of the hospital, albeit less frequently. It is always the same story: a loss of hope about a better quality of life causes him to give up; ditching his meds for the "escape" that a psychotic episode promises; and, a burning desire to change his seemingly unchangeable situation. We've come to recognize Max's self-inflicted mental breaks as an outcry for help amid a wave of profound depression.
While he has come to accept that every anti-psychotic drug cocktail he's tried makes him "feel like he's drowning," he still has trouble accepting that he may never have the kind of life that he once imagined for himself - a family, a job, an opportunity to make a meaningful contribution to his community. He wonders if he'll ever have any kind of social exchange that is free of disconnection on some level, let alone drive again, go on a date, or see another part of the world.
And with only further cuts to mental health services in sight, we wonder, too.
Max's overall quality of life has improved remarkably in the past two years, now living in a board-and-care home with other veterans who have battled schizophrenia for 20-30 years longer than he has, offering him the first friendships he's experienced in more than a decade. Weekly visits from our parents and our daily talks remind him he is valued and loved.
Amid a bleak backdrop, yet with so much potential for positive outcomes for the thousands of Americans in my brother's shoes, my family finds hope in a fight for funding, research and awareness. We hope you will join us.
How can you help?
· Tell your representatives that mental health is a priority and cannot withstand further cutbacks.
· Support an organization with a voice in Washington pushing for reform:
- National Alliance on Mental Illness (NAMI)
· Fund research for treatment/cures: International Mental Health Research Organization
Educate yourself about mental illness. Open your mind and heart to those with a mental illness in the same way you would for someone with cancer or heart disease.