By Bradley Nuimano Tarr
At the age of eleven, I began showing signs of having a serious brain disorder (SBD), commonly referred to as a serious mental illness. Until age twenty-six, I cycled in and out of hospitals well over twenty times because of my symptoms. My participation in an Assisted Outpatient Treatment (AOT) program gave me my longest period of stability.
My symptoms first emerged in the fourth grade when I experienced depression. I was sent to a hospital for two weeks and placed on medication.
Then, from ninth to twelfth grade, I experienced suicidal thoughts, insomnia, paranoia, and mania. One psychiatric medication I was on made me so rageful that I ended up punching several holes in my mom's cabinets and walls. I believe it was a side effect because I had been having a good day until that point, and the anger was entirely unprovoked. My diagnosis during this period of my life was bipolar or unspecified mood disorder.
Four years later, while at college studying philosophy and humanities, my symptoms flared up again. I had gone three days without sleep, had angry outbursts over relatively inconsequential matters, and behaved in a very paranoid manner. I was even pacing around campus, talking to myself. At my worst, I threatened to harm other people because I was convinced they were conspiring to hurt me. My behaviors were so concerning that I ended up spending fourteen days in a New England hospital before returning home.
Within four weeks, my symptoms scared my mom so much that she dropped me off at the front door of the county hospital. My mom tells me she was afraid that I would hurt her. In case my delusions or hallucinations flared up in the middle of the night, she would lock her bedroom door as a precaution. Although I never considered harming her, I understand where she was coming from.
My grasp on reality was tenuous, and I became illogical. It is hard to reason with someone seeing, hearing, and smelling things that are not there. My mom could not cope with me and continue to share an apartment with me. I had to get out.
In the winter, I became homeless. I had estranged myself from my family. Not even my siblings knew how to cope with me. A homeless shelter operated by a local mental health agency took me in. For about a month, I survived in quarters that were crowded and cramped. I lived there with about a dozen people, many of whom were far sicker than me. After several days of being verbally threatened and bullied by others, I punched a hole in the shelter's wall. This landed me in fourteen months of intensive probation through the mental health system. I had to pay nearly $1,000 in restitution for the hole in the wall.
Thankfully, my mom took me back into her house. But that was a small solace. While on probation, I had to manage several things at once. I had to report to the local municipal court building two or three times per week for random drug and alcohol tests. I had no car and if I couldn't get a ride to the building about seven miles away, I would be forced to walk there. I walked regardless of the weather, which was often freezing and stormy. While on probation, I also had to go to psychotherapy, anger management classes, schizophrenia classes, psychiatric appointments, and court hearings with the judge, all of which were scheduled frequently. If I missed anything, I would have automatically spent a month in jail. To my relief, I eventually graduated from probation.
Two years later, I again entered a symptomatic phase, which was the worst of my life. From February to May 2019, I was hospitalized five times in three months. I was depressed, then manic, then depressed again. I had severe bouts of insomnia, paranoia, and delusions.
I believed I was the director of the National Security Agency. Another time, I thought I was the Secretary of Defense. I saw all things around me as coded messages from the government. For two weeks, I was a 007 agent. I thought I was encountering MI-6 agents almost everywhere I went. They were even dispersed and scattered throughout the crowd during Mass at Church. For a week I just knew that I was a member of the Roman Curia, an advisor to the Pope. I thought I was married to my high school sweetheart.
I had visual, auditory, and olfactory hallucinations. I was convinced for about three weeks that my mom smelled like an open sewer. I was terrified of her. For a week after that, I kept hallucinating that I was vomiting all over my room, but my mom said I hadn't. This made me distrust her even more.
After three months, AOT entered my life. And it turned my whole life around for the better. I was brought before a judge who organized a team of well-trained experts around me. I was gifted with a new psychiatrist. Finally, I was diagnosed with schizoaffective disorder.
As another integral part of my AOT treatment team, I was given a case manager. He met with me every fourteen days. He counseled me and helped me to establish and stay grounded in my goals. My case manager took me anywhere in the county that I needed to go. He not only managed my reports to the local mental health agency on my updated improvements and goals, but I also considered him a life coach. He was the first person I called if I was having a bad day, and the first person I informed if I experienced that my psychosis or insomnia were getting bad and taking hold.
For a while, until I no longer needed it, I was given a psychotherapist, who helped me organize my thought patterns and maintain a healthy outlook. The team also coached me on how to slow down racing thoughts, and on how to prematurely catch, and root out, the beginnings of delusions.
For around sixteen months, once a month, I reported back to the judge. The AOT team invested in me. They didn't just label or categorize me. They saw me as a person, not just as a case study. The approach of AOT is holistic, the whole person not only recuperating for a time, but being formed into a rhythm of continuous healthy living. I graduated from AOT.
AOT brought me from a hopeless recycling of symptomatic episodes to a place where I could anticipate instability and counteract it. AOT even gave me the tools to educate my family about my condition. They now know if I'm symptomatic. For instance, I always report if I went the previous night without sleep to my mom. And we have a standing protocol that if I go three nights in a row with very little, or no sleep, we immediately call a squad to check me out and notify my psychiatrist for an emergency appointment.
These are all things that I wish we'd had in place as preemptive measures since I was eleven. It took AOT to educate us on catching symptoms early. AOT should be implemented nationwide. Unfortunately, many counties and even three states (Massachusetts, Maryland, and Connecticut) lack AOT. The AOT program communicated to me, "It is not your fault that you're in this mess. You merely have a sickness. But we are here for you. We'll help you get, and stay, out of it." Without a doubt, this type of treatment saves lives, as I believe it saved mine.
By Pat Morgan
In 1983, I answered the call from my church’s priest, whose compassion for homeless people and his work to help them in Memphis (and nationally) defies description. The scene when I walked into Calvary Episcopal Church’s elegant “great hall,” was stunning, but not because of the massive chandelier or the red velvet drapes at the windows. Seated in the solid oak chairs along the wall were about a dozen ragged, forlorn, and sickly men. I had been a real estate broker, banker, and elected official in the county government previously. So, not much prepared me for the hardship and illnesses I was about to encounter.
I’d seen a lot of poverty in my life, lived some of it when I was a child, and worked to help end some of it as an adult. I knew more than I’d ever wanted to know about addiction, having learned some of the most important parts (too little and too late) at Al Anon. I knew a little about brain illness, commonly referred to as mental illness, and nothing at all about the mental health system. Although nothing works to end homelessness without housing, it became painfully clear to me that homelessness is about a LOT more than the lack of affordable housing. Serious brain illness can contribute to homelessness. When people are unable to meet ordinary demands of life and cannot attend to their basic biological needs due to illness, loss of housing can ensue.
For the next five years, I spent almost every weekday afternoon talking with, and later assessing, the needs of our visitors while helping to develop, and then directing, always as a volunteer, Calvary’s “Street Ministry.” During those years, hundreds of people, primarily men, walked, staggered, stormed, slipped, or were so intoxicated or psychotic that they half-floated through our doors and into our hearts. At least a third were mentally ill and more than a few were actively psychotic. We listened, learned, provided vouchers for shelter, personal needs, bus tickets, or prescriptions when there were no other sources. While I cared deeply about all of them, a few, usually those who were clearly mentally ill, stole my heart and then broke it, and would finally send me on a decades-long battle to secure for them the inpatient treatment they desperately needed. They didn't necessarily want it, and rarely, if ever, received it.
The director of the state's acute care mental hospital in Memphis had finally tired of my impassioned (or desperate, heartfelt, consistent) appeals, and told me what I didn't want to hear. "Pat,” he said, “You know they’re committable and I know they’re committable, but I can't say it, because if I were to commit them, the stark reality is I simply don't have enough beds.” He wasn’t just talking about furniture. He needed staff.
I needed to know why he couldn’t get what he needed. It would take decades, but along the way I’d learn about why our mental health system, locally, statewide, and nationally, was so broken. Thankfully, two of Memphis’ mental health centers began sending us crisis specialists to help our visitors, who’d acknowledge that they were suicidal or homicidal, get the three-day inpatient treatment they desperately needed in the new crisis unit, with follow-up services. They were remarkable, and I learned a lot, but not enough.
When Alepeachie, my all-time-favorite homeless person and only "success story" was found dead in the apartment the crisis specialists had found for him, I “lost it.” Alepeachie had slept in a series of cardboard boxes near a downtown church for years and it had taken months (and a lot of KFC) for me to gain his trust, which was easily transferred to the crisis specialists. I'd seen him a few days before and he'd looked good, but when I asked him how he was doing, he'd said "I don't hear the voices telling me to kill myself anymore, but my life is so empty I still want to kill myself." I’d meant to call the crisis specialists but had simply forgotten by the time I got home. This was before smartphones had been invented.
Devastated at his funeral, I vowed that I’d never stop trying to help people with serious brain illnesses. That promise would lead me back to college (at age 48) and then on to Washington, D.C., for a semester in American Politics. My new career path led to a presidential appointment as a program specialist in the U.S. Interagency Council on Homelessness. Returning to Memphis some years later, I continued working on homelessness, with a special focus on those with serious brain illnesses.
I am now retired, but remain a passionate and dedicated advocate for people with serious brain disorders who captured my heart so many years ago. And I vow to continue for as long as I am able. I am honored to serve as an advisor and advocate for the National Shattering Silence Coalition.
Pat Morgan has worked to help homeless people, especially those with serious brain disorders (SBD), commonly referred to as serious mental illnesses (SMI), for decades. Her experience includes serving for five years as the unpaid director of a church-based "Street Ministry" to homeless people, seven years as a presidential appointee to the staff of the U.S. Interagency Council on Homelessness during the Clinton Administration, and ten years as the director of Partners for the Homeless in Memphis, TN. Upon her retirement, her volunteer work focused on homeless people with SBD through the Room in the Inn program in Memphis. She is the author of two books, “The Concrete Killing Fields,” and “We Hardly Knew Them, How Homeless Mentally Ill People Became Collateral Damage.” A relentless advocate, both books include multiple stories about her work with homeless people suffering from SBD and call for major changes in our mental healthcare system to meet their needs.
By Nancy Boucher
I have always had an interest in the wilderness of the mind. I’m no stranger to serious brain disorders, commonly referred to as serious mental illnesses. Both my maternal grandmother and my uncle died with diagnoses of serious brain disorders in state hospitals.
I also grew up with two older siblings with diagnoses of serious brain disorders. My older brother gravitated especially towards me when he was having intense symptoms, weaving me into his delusions. And at an early age, my mom sought out my help in supporting both. She even offered me money to counsel my sister Theresa. I often lent my support to my siblings and my mom. The support took many forms.
During the early years of our marriage, my husband and I started a business called Nancy's Fruits and Veggies. One day I took Theresa to work with me. Before we got out of the car, she told me as she was looking into the rear-view mirror that she had four eyes. I naively tried logic, to no avail. After about a half hour of hanging out with me at the stand, Theresa said she had to leave, and off she went! I was alone and responsible for keeping our fledgling veggie and fruit stand open. This was not during the time of cell phones, so it was only after a full day of work that I learned my sister had made her way home. She traveled about four miles, but only after stopping at a stranger’s and asking if she could take a shower.
Over the years, and thankfully, my sister’s illness eventually stabilized with medication. Theresa had a gifted, kind-hearted, and brilliant psychiatrist who always took time to see her.
After our parents passed, Theresa lived in the family home alone—a tiny bungalow where my seven sisters and I had slept four to a bed. My sister was everlastingly committed to family. She cared about and welcomed everyone in our family, even those who had serious issues, into her home. She never excluded or abandoned anyone in need.
Theresa had a heart of gold. The way she lived her daily life exemplified compassion and acceptance. I was the student, and she was the teacher. Simply knowing her helped me immensely in my profession as a behavioral specialist in special education classrooms. Theresa taught me that I had to see each of them to reach them, and I had to reach each of them to teach them. I learned, too, that the richest resource for me in helping them were their family members. So, I reached out to meet with them, seeking their knowledge, experience, and insight. It was an incredibly rewarding job.
I learned that a unifying concern for families was the impact of this child on their other children. So I started a sibling support group that was powerful for all involved. We always began our group meetings by having the siblings put their dominant hand behind their back and work together to pass a package of lifesavers to share with each other. This simple activity demonstrated a lot.
In my immediate family it took me so long to see the heartbreaking impact of serious brain disorder on my son, Clem—my beautiful, sensitive, charming. smart, capable boy.
I kept trying to guide and teach him like I had always done alongside his brother. Once they were in high school and were going out at night, I always said the same thing to them—be safe and be kind.
About eight years into Clem’s illness, when I made a request of him, he said, “Mom, it’s like you are asking a 2-year-old to go grocery shopping for the family.” Even then, he was educating me about the impact of his serious brain disorder. I didn’t realize it at the time, but he was the teacher and I was the student once again.
Over the years, there have been many times when his dad and I have set out with good intention to try to teach Clem good habits to keep his body and spirit healthy.
For example, COVID has been especially challenging for Clem. He’s been isolating, going deeper into his mind. And he’s smoking more. More specifically, he’s smoking half of a cigarette, then squishing it out. We are buying more cartons and spending a lot more money each week, trying to keep him supplied with that de-stressor.
His dad tried to set up a new system for Clem. He gave an ashtray with sand to him, where he could snuff out the cigarettes gently and then smoke them all the way down before lighting another. It didn’t work.
Then I remembered to watch the student and follow his lead. Our efforts, advice and attention to the issue were creating more pressure on him.
To even begin to understand, I imagine that I am bed-bound from a catastrophic illness. It has bruised my brain and changed what I can do. I must leave behind what I once loved doing, and what defined an essential part of who I once was.
These are the lessons that have been given to me from the wilderness of the mind. Stand beside loved ones with no judgment. Support them with patience and compassion. And love without measure. I thank my family for these gifts.
As parents, we bring children into this world knowing it is our job to protect them. Unfortunately, when my young adult son, Jack, was diagnosed with a serious brain disorder (SBD), commonly referred to as serious mental illness (SMI), I found myself helpless to keep him safe. The current laws in my home state of Massachusetts frequently result in incarceration, violence, and homelessness, leaving many of those with SBD to die prematurely, rather than receive the treatment they desperately need.
As I watched multiple gut-wrenching tragedies unfold on the news over the past year, so many related to untreated SBD, I knew there has to be a solution. With a Google search, I found the Treatment Advocacy Center and learned about Assisted Outpatient Treatment (AOT). I’d never heard of it.
AOT provides community-based psychiatric treatment under a civil court commitment. It is a means of engaging an adult with SBD who struggles with voluntary treatment adherence. It focuses the attention of treatment providers on the need to keep the person engaged in effective treatment. I have become a strong advocate for AOT, the compassionate care credited in helping so many with these devastating illnesses in their ongoing recovery. Yet, AOT is something my state of Massachusetts does not have. Maryland and Connecticut also don’t allow AOT.
As a master-level nurse who knows how to navigate the healthcare system, the options available to get my son, Jack, the help he needs when experiencing a manic episode are non-existent. I am left watching his condition deteriorate as he becomes increasingly psychotic, that is, until he actually becomes a danger to himself or others. The irony is that it then becomes a law enforcement issue.
The night the police were called to his apartment building, Jack was roaming the halls with a pocket knife in hand, paranoid and fearful that someone was after him. He was a danger to himself and others. This situation could have ended very tragically, and so I vowed to never again let his psychosis escalate to that level.
Being in close contact with the Crisis Intervention Team of the local police department, the perspective they shared was that Jack would need to be arrested, preferably before he was a danger, so that the court might commit him involuntarily to a psychiatric hospital.
In the summer of 2021, when Jack became manic again, I knew that the paranoia and delusions were beginning to set in. He could become a danger again. I was convinced that I needed to get him arrested to get him help. I found my opportunity.
Jack had scratched a swear word on the trunk of our car. I called the police and told them that I wanted him arrested for destruction of property, even though I wasn’t positive he did it. I believe the police only arrested him because they knew he needed help.
I thought that having Jack arrested and involved in the criminal justice system would be the best way to ensure that treatment would be provided. And he did get help. I was grateful for the 30+ days that he spent in an inpatient state facility after he was evaluated by the court clinician. Earlier intervention of his psychosis was extremely beneficial in that he recovered and returned to baseline much quicker than he ever had.
But that’s not the end of the story. The reality of what I had done set in soon after Jack’s release from the hospital. It was very clear the moment we stepped into the courthouse that he was being criminalized for having a SBD. Despite his time spent in the psychiatric hospital, the District Attorney charged him with felony vandalism because the damage was over $250. There was no compassion or understanding around the needs of someone living with a SBD. Instead, he was treated no differently than a criminal would be, with punitive probation, random, often daily drug and alcohol testing, and the authoritarian nature of the judge (because of the lack of knowledge of his SBD). None of this helped. In fact, it only added to his instability despite taking his medication. My job as a mother is to protect my son. But in order to do so, I was put in the horrible position of having to engage him in nine months of punitive treatment. I still feel extremely guilty for putting him in a system that was unable to recognize that having a SBD is not a crime, and shouldn’t be treated as such.
This experience is one of countless examples of how broken our mental health care system is, and how marginalized those with SBDs are throughout the United States. The harsh reality is that those living with SBDs are too sick to fight for their rights.
As Jack’s mother, I am compelled to keep fighting to protect my son. Our loved ones deserve better. They deserve the compassionate and effective treatment approach of AOT in every state across the United States!
I have learned that to affect real change, I can’t do it alone. I joined the National Shattering Silence Coalition so that collectively we can make our voices more powerful. Support and join us #ShatteringSilence and #InspiringChange for the 22 million people who live with these devastating illnesses. They too deserve a life of compassion, purpose, and hope.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy
By Marcie Sohara
Many families are struggling to find care for their loved ones with serious brain disorders, or have experienced tragic consequences from the failed mental health system. I too have experienced challenges and heartbreak due to my son Joe’s serious brain disorder, that is, schizophrenia. At times, I honestly didn’t know if there was any hope. I know better now.
When Joe was nineteen and a freshman in college, he told me something was wrong with him, that he wasn’t thinking right. I was scared and took him to the hospital emergency room. They diagnosed anxiety and depression and prescribed antidepressant medication. But his behavior became increasingly troubling. His father and I tried to help him, but he was becoming more withdrawn and confused.
Just days after the start of the fourth semester in mid-January 2009, he showed up at our house at 6 a.m. and told me he was quitting school because of things that were happening to him there. The next two weeks, trying to figure out what was happening to my sweet son, were awful.
Joe already had an appointment scheduled for later that month with the psychiatrist, who prescribed the antidepressant. In the meantime, he was becoming more unpredictable, and his behavior was extremely odd. I happened to be in psychotherapy myself, and my therapist told me it sounded like he was psychotic. At that moment, I didn’t fully understand what that meant.
On January 27th of that year, at our son’s request, Joe’s father and I attended his psychiatrist appointment. When we finished describing Joe's behavior, the doctor asked Joe to step outside. I will never forget what the doctor said next.
“I’m sorry to tell you that your son has schizophrenia, and you should give up on any hope or expectations you have for his future.” I was devastated. Joe’s father was extremely angry that the doctor would say such a thing. Then he dismissed us with a prescription for an antipsychotic medication and an appointment in three weeks. The doctor essentially told us our son would not have a future.
2009 was an extremely rough year for us. Joe attempted suicide twice and was committed to the psychiatric hospital a total of four times. Each hospitalization lasted for sixty to ninety days. I’m grateful for his father’s excellent insurance coverage and for the doctors who worked with me to get him well.
After the three hospitalizations due to forced commitments and two suicide attempts, thankfully he was eligible for court-ordered Assisted Outpatient Treatment (AOT) program. The fourth hospitalization was preceded by him tearing up my house. After that, his team got him into an intensive nine-month supervised group home, where he learned about his illness and the importance of taking his medications. That got us through most of 2010.
When he was discharged from the program, he wanted to come home. I agreed under the conditions that he continue taking his medications and either go back to school or get a job.
Working part time and taking part-time classes, he earned an associate’s degree in business in 2013. He then attended Penn State at a campus close to home and graduated with a bachelor’s degree in May 2016. In addition, he was inducted into the National Honor Society for business and marketing. He made the dean’s list for several semesters and graduated with honors.
It turns out, the doctor who told us to give up all hope was wrong.
Joe was given many opportunities for wellness. He had a great AOT team and a very supportive family. Some really great staff worked with us when Joe was in the inpatient unit, and his insurance allowed him the time he needed to get well.
In the years since his diagnosis we have had some setbacks, but only two short additional hospitalizations. Keeping him stable isn’t easy, and certainly COVID didn’t help, but overall he continues to move forward. I am still concerned about what the future holds for him, but preventing another hospitalization is my primary focus.
Undoubtedly, all doctors would want this kind of outcome for their patients, but many either do not believe it’s possible or just don’t care enough to provide meaningful help. Similarly, many in the public would support these kinds of outcomes, but don’t understand the issue because they are not directly affected by serious brain disorders. We must do our best to educate them, and if we cannot bring them along, learn how to work around them to get the necessary help for people like Joe.
My deepest, or heartfelt, wish is that every individual suffering from schizophrenia and other serious brain disorders gets the same help as Joe. They too could have the opportunity to be productive members of society.
If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy #ShatteringSilence
As we enter the first few weeks of 2022, advocates at the National Shattering Silence Coalition have renewed hope for the coming year. With our newly formed nonprofit, we are attracting new members and gaining momentum to accomplish our goals. In the months ahead, our work will be guided by our vision to create a more compassionate and just world for people with serious brain disorders. We call this our North Star.
We imagine a better future for those who have been suffering, discriminated against and abandoned for far too long. We can bring this future closer, one step at a time, if we all come together and use our collective power to create change.
We have identified eight pillars of change below to make our vision a reality. Imagine a better future for your loved one who suffers from a serious brain disorder, for yourself if you are a person who suffers, or for your patients if you are a professional in the trenches.
IMAGINE THE POSSIBILITIES ... #JUSTICEFORSBD
What if discrimination based on serious brain disorders were no longer socially acceptable or tolerated and the world was as outraged about the injustices faced by people with serious brain disorders as they are about racism, LGBTQ+ discrimination and xenophobia?
The U.S. is outraged about discrimination against people of color, the LGBTQ+ population and other marginalized groups, and rightly so. The COVID-19 pandemic shed light on widespread racial inequities, and with the death of George Floyd, the country came together to support Black Americans.
Conversely, when scientists discovered that people with severe brain disorders were disproportionately dying from COVID-19, our country did not have a similar reckoning.
People with serious brain disorders are 16 times more likely to be killed during a police encounter, according to the Treatment Advocacy Center. They are disproportionately incarcerated, living in poverty, homeless, living with medical co-morbidities and have shorter lifespans.
They suffer horrific abuses and neglect, and yet Americans have shown no widespread outrage—there have been no marches on Washington, no protests or national conversations about these injustices. It’s time for that to change.
The National Shattering Silence Coalition is giving a voice to all those who have suffered injustices. It is time for us to shatter the silence and finally bring these inequities to light, so that our loved ones will suffer no more.
IMAGINE THE POSSIBILITIES ... #RIGHTTOTREATMENT #SHATTERINGSILENCE
What if people understood the true nature of serious brain disorders?
The National Shattering Silence Coalition provides information to the public to correct the misperceptions about brain illness. We speak out so people can fully understand that illnesses currently labeled as serious mental illnesses in adults and serious emotional disturbances in children, such as schizophrenia, schizoaffective disorder, bipolar disorder, and major depressive disorder, are biologically based, no-fault brain disorders.
They are not a failure to control one’s behavior, a character weakness or the result of a traumatic childhood.
What if we created a world where it was universally recognized that disorders originating in the brain were not “behavioral” but medical disorders?
Imagine if everyone understood that when the organ that allows a person to think, behave and reason is impaired, the ability to make informed, rational decisions is also impaired.
We advocate for laws and policies reflecting the truth that as many as half of those with schizophrenia and 40 percent of those with bipolar disorder lack insight into their illnesses, known as anosognosia. They should not be expected to ask for help.
Providing the right to medically necessary treatment is the only humane response. It would eliminate needless suffering, prevent incarceration, homelessness and death, and offer the best chance of recovery.
IMAGINE THE POSSIBILITIES ... #HIPAAHANDCUFFS
What if family members who know their loved ones best were welcomed as part of a person’s treatment team, just as we do for family members of those with dementia, brain injuries and other brain disorders?
Family members have vital insight and information about their loved ones’ health history and must not be shut out of communication with medical professionals due to overly restrictive or misinterpreted HIPAA privacy laws.
Participation of family members, especially when a person lacks insight due to their brain illness, is critically important to ensure the best care.
Just as doctors share health information with family members of those with dementia, brain injuries, and stroke, we envision a world where doctors actively seek out input from family members of those with serious brain disorders and communicate openly with them. Doctors and families who desperately want to help their loved ones would collaborate to ensure the best possible outcome for the person with brain illness.
IMAGINE THE POSSIBILITIES ... #LIFELONGCARE4SBD
What if people with serious brain disorders received a full continuum of care at every stage of their illness?
Serious brain disorders are chronic, life-long illnesses that require differing levels of treatment depending on the severity and stage of illness. These individuals need a full range of services—including long-term inpatient care, step-down units, intensive outpatient services, community programs, supportive and independent housing options and supportive services—instead of a revolving door of short-term inpatient stays with inadequate treatment and no follow up services in between.
We must provide enough treatment beds and centers to serve all who need them, just as we do for every other type of illness.
People with serious brain disorders need and deserve comprehensive wrap-around services in the community, including counseling, social supports, education, job training and opportunities, connection to resources, and assistance with legal issues (e.g., applying for SSI/SSDI, creating mental health advance directives, filing tax forms).
Their family members/caregivers also need and deserve education, social and financial support, and assistance with legal issues such as applying for guardianship and setting up trust funds on behalf of their loved ones.
IMAGINE THE POSSIBILITIES … #PARITYFORSBD
What if the determination of whether to receive medical care were based on a doctor’s expertise rather than a judge or the law, or lack of bed availability?
If we treated serious brain disorders like we do every other medical illness, doctors would decide the appropriate medical intervention instead of laws that are designed to thwart the right to treatment.
Instead of waiting until a person has deteriorated to the point of danger, we would ensure medically necessary treatment. The inhumanity of withholding treatment can no longer be justified in the name of civil liberties.
With the success of many Assisted Outpatient Treatment (AOT) programs and what we now know about early intervention, those with serious brain disorders would be freed as victims of their illness, no longer prisoners of their own minds. Psychosis, including delusions and hallucinations, would no longer be a right to protect–instead we would focus on the right to treatment that would restore one's sanity, dignity, free will, and the ability to exercise their liberties.
We envision a country where a person with a chronic serious brain disorder would not be denied treatment because of an arbitrary limit on the number of treatment days or lifetime caps. They would be cared for as compassionately and humanely as a person with Alzheimer’s or Parkinson’s.
IMAGINE THE POSSIBILITIES ... #FUNDINGEQUITY
What if we spent as much on serious brain disorder research as we do on mental health or on other serious illnesses?
Our society’s lack of caring has seeped into our government’s research priorities. We spend far less on research into serious brain disorders than we do for mental wellness, mindfulness, and stress reduction, or for other serious illnesses such as Alzheimer’s.
For example, the National Institutes of Health, our leading government agency for public health, spent $519 million on serious mental illness research with a 14.2 million prevalence in the adult population compared to $3.5 billion on mental health research or $2.9 billion on Alzheimer’s with a 6 million prevalence.
If you do the math, there is a glaring mismatch: $36.55 spent on adults with serious brain disorders compared to $478 on those with Alzheimer’s, which is 13 times or 1,327% more per person.
If the U.S. invested more in research, people with serious brain disorders would have better treatment options than medications that come with terrible side effects such as obesity, permanent movement disorders and lethargy, to name just a few. Research may finally reveal the causes of these disorders, paving the way for new treatments and therapies that would reduce suffering and lead to a better quality of life. We would learn why people with schizophrenia and bipolar disorder die 25 years earlier than the average life span and, in time, eliminate this disparity.
IMAGINE THE POSSIBILITIES ... #ABEDINSTEAD
What if we no longer criminalized serious brain disorders and instead offered compassionate treatment?
There are approximately 383,000 inmates with serious brain disorders in jails and prisons. Individuals with schizophrenia and bipolar disorder are 10 times more likely to be in a jail or prison than a hospital bed. These individuals need treatment, not handcuffs.
Serious brain disorder should be treated as a public health issue, not a criminal issue that is addressed with punitive and restrictive environments that lack the appropriate resources, supportive housing and adequate treatment support.
In a just world, we would provide treatment to those with serious brain disorders rather than sending them to jail to decompensate further. Compassionate care delivered through Assisted Outpatient Treatment programs when needed and appropriate would help end criminalization of serious brain disorders by connecting those in crisis to treatment and a continuum of care.
These services are vital to helping individuals maintain stability and safety. Timely intervention would help avoid a criminal record, which becomes a significant barrier to many essential aspects of healthy living, including employment, income and housing.
A collaborative program that involved interdisciplinary health care teams providing intensive treatment services designed to promote stability and achieve recovery in the community would replace incarceration and hospitalizations. Instead of the criminal justice system deciding the fate of those with serious brain disorders, a collaborative medical team would determine the appropriate medical care needed.
Having a brain illness is not a crime – we must continue to work on decriminalization by offering comprehensive treatment as an alternative to jail.
IMAGINE THE POSSIBILITIES... #TREATMENTBEFORETRAGEDY
What if we provided treatment at the earliest symptom of disease instead of waiting until after a tragedy to intervene?
Research has shown that allowing brain illnesses to go untreated–to grow progressively worse–causes irreparable damage to the brain and reduces the likelihood of recovery. Withholding treatment for a neurodegenerative disease is cruel and causes immense suffering to both the individual and their family. In addition, allowing an individual to deteriorate can lead to tragic consequences.
While perpetrating violence is relatively uncommon among those with serious mental illness, it is more prevalent when untreated psychosis involves paranoia or command hallucinations. According to the Treatment Advocacy Center, roughly 3% of the population with serious brain disorders are estimated to account for approximately 50% of mass killings, 20% of law enforcement fatalities, 10% of all homicides and 29% of family homicides.
The tragic and costly consequences of untreated serious brain disorders are preventable. The best outcomes occur with early identification and intervention focusing on a full continuum of care with comprehensive services.
It is possible for those with serious brain disorders to overcome challenges and lead meaningful, productive lives.
We cannot make this world a reality without the help of advocates who are willing to shatter the silence and make change. Please join us.
By Khadeeja Morse
In a psychotic episode, my son, Mikese, drove a car into a family who was bicycling outside their home on June 24, 2018. Pedro Aguerreberry, a 42-year old father of two sons, aged three and eight, was tragically killed as a result.
The state of Florida has determined that Mikese is not guilty by reason of insanity. On April 19, a judge will finalize this decision and determine where Mikese needs to be placed.
This horrible tragedy might never have happened if Mikese had received the treatment he needed—the treatment his brain illness deserved, and the treatment my son pleaded for when he took himself to our local police station and confessed he might hurt someone.
We will never stop reading about horrible events like my family’s until more people understand the obstacles to treatment our loved ones face, and until unjust laws are changed. That’s why I talk back.
Our fight continues to free Mikese from the criminal justice system and allow him to be treated in a psychiatric hospital.
We seek to have him removed from the criminal justice system completely, with no oversight. Mikese’s civil and legal rights were violated from the very beginning. Mikese was not in his sound mind to even be able to accept his Miranda rights based on all of the evidence at the time of the arrest. This was well documented in all of the records from the day of the arrest.
Why should Mikese be removed from the criminal justice system? There are a number of reasons.
Beyond the Mental Illness Stigma Is a Brain Disorder
Most people don’t realize schizophrenia and bipolar disorder are actually serious brain disorders (SBD). The American Psychiatric Association describes both schizophrenia and bipolar disorder as brain disorders.
Being diagnosed with one of these disorders is bad enough. Having a combination, which is what Mikese has, is worse. To further complicate things, Mikese also suffered from anosognosia, which is when a person lacks awareness of their illness. Anosognosia is a common symptom of schizophrenia and bipolar disorder.
Mikese had the wicked trifecta of schizophrenia, bipolar disorder and anosognosia. The hard, cold truth is that many people suffering from these illnesses end up homeless or incarcerated.
The IMD Exclusion and How It Contributes to Tragedy
The IMD exclusion prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease with more than sixteen beds. It basically discriminates because an illness is classified as “mental” instead of medical.
Since there’s no funding for mental illness, even if there are hospital beds available, a person with an illness classified as a mental illness can’t fill the bed. He simply gets released to his own accord, like Mikese was.
An excellent article by the National Shattering Silence Coalition explains why and how policies like the IMD exclusion discriminate against people with SBD, which is typically referred to as serious mental illness (SMI).
Why Classification Matters
I can’t give you a better example of why classification matters than another heartbreaking news story that happened on the same day as our tragedy. A distraught mother describes losing consciousness due to a medical emergency while bathing her infant daughter. Her baby drowned, and sheriffs classified this as an accidental drowning. You’ll hear her say she had no idea what happened. Click here to watch.
This video is especially hard for me to watch because when the police were at our house interrogating Mikese, I recall him saying the same thing as this mother. He said he felt something take over his body, and he didn’t know what happened.
The mother has a medical illness. Mikese also has a medical illness, but his is classified as a “mental” illness. Both conditions led to actions that resulted in loss of life. Yet each situation was handled very differently by the medical and legal systems.
Now can you better understand the ridiculousness of the IMD exclusion?
HIPAA Laws Further Complicate Things
In an additional unfortunate and related twist, HIPAA privacy laws often prevent families from finding out any information about their loved ones before, during, and after hospitalizations.
What’s worse is that loved ones are often released to the streets, alone, with no support or guidance. They are left to fend for themselves while managing a medical condition that significantly impairs how they think. How does that make sense?
Can you imagine just releasing to the streets someone suffering from a stroke or heart attack before they were fully recovered, without any notification to a family member or loved one about the condition, care, or treatment?
The deadly duo of the IMD exclusion and family-unfriendly HIPAA laws often creates an insurmountable barrier for families. I call it a deadly duo because this combination is what led to the tragedy.
When Mikese took himself to the police, they “Baker-acted” him and he was admitted to Gracepoint, a psychiatric hospital in Florida for people deemed a threat to themselves or others.
The Baker Act is the authorization to involuntarily confine someone for up to seventy-two hours. It is important to note that while the Baker Act involves involuntary confinement, Mikese requested help by initiating contact with the police. The fact that he sought help is part of why he should be freed from the criminal justice system and allowed to get the help he was seeking before the tragedy.
Mikese was still psychotic at the hospital, so much so that we had to take over his medical decisions because he wouldn’t take medicine and attacked a public defender who came to see him.
He was kept in the hospital for about seven days and released because he was supposedly stable. We know he was far from stable. Despite needing longer treatment to stabilize, he was prematurely released from the hospital because there was no funding for “mental” illness. The IMD Exclusion negatively impacted him.
Also, there was no aftercare to support him when he was discharged. Since he’s an adult, Mikese was released to the streets, alone, with a messy stack of hard-to-read paperwork, a bus pass and a “good luck.” Within days of his release, the tragedy happened.
Proof Is in the News
When we realized the police were not going to be truthful about what happened with Mikese, we knew we needed to speak up.
This was our first formal interview with a local news station. Listen all the way to the end when the reporter speaks to a local expert about the lack of available funding and space to support patients with mental illness.
As I have often said, this crisis of lacking mental health care is the worst kept secret in the country, getting very little media attention or funding.
Who Else Will Be Held Accountable?
This is why, after another local news story about Mikese’s sentencing, I wrote an open letter on Facebook to State’s Attorney Andrew Warren, asking who else he would hold accountable for Pedro Aguerryberry’s unfortunate and unnecessary death. On air, Warren states, "This case shows the consequences of Florida's broken mental health system, and the victim's wife and kids are left holding the pieces.”
His statement shows the great hypocrisy of the system, acknowledging only one side of the equation. It is true that the Aguerryberry family experienced a horrific loss that never should have happened. However, they aren't the only ones who are left holding the pieces.
Far too often, families like ours, who have been desperately trying to support our severely mentally ill loved ones with very few external resources, are left holding the sharpest pieces of the broken mental health system. We are marginalized and vilified because of the undesirable behavior of our loved ones. We get words and platitudes of understanding and support, especially after a tragedy or around election time, but not real, sustainable or meaningful proactive support.
Why I Talk Back
Click here for all images from my TikTok video. As you look at them, please keep in mind the whole story.
I talk back because my son couldn’t speak for himself. I talk back because it was very clear to us very early on that the police weren’t going to be honest about his brain illness. They had already begun to vilify and dehumanize Mikese during their press conference. They left out vital information about his illness and even the fact that they were the last ones to hospitalize him.
I talk back because there are thousands of people suffering from untreated SBDs. I talk back because those thousands of people have thousands of loved ones who are doing the best they can for their seriously ill loved ones. They too suffer profound pain and trauma as they watch their loved one slip away and are helpless to do anything about it.
I talk back because we need to be seen, heard and acknowledged. I talk back because we need help and not just lip service around election time or after a tragedy.
I talk back because we ask for help but what we usually get are bloodied fingers from the sharp, broken fragments of a failed mental health system we’re forced to piece together with our bare hands.
How You Can Help
I am a proud member of the National Shattering Silence Coalition and very much support their programs and platforms. The Calls to Action section of their website offers some great ways you can help support our cause.
Please also continue to keep our family and the Aguerryberry family in your thoughts and prayers.
Why do you talk back?
Please share your stories with us. Our stories must be shared with the general public who doesn't have a clue what we are going through. They do not know how incredibly broken our system of care for those with serious brain illnesses is. They have no clue that we are unable to get help for our loved ones. They have no clue that, instead of receiving treatment for their illnesses, our loved ones are abandoned, criminalized, and left to rot in jail or die in our streets. It's up to us to speak out and inspire change.
They must also be shared with Congress, our President, and anyone with the power to bring about the change we so desperately need.
Submit your stories to email@example.com. Please feel free to write them or, better yet, record an audio only if you wish to remain anonymous, or a video, if you are OK with us using your name.
Coordinator & Co-Chair Steering Committee, NSSC
By David Meyers
My mania began as a freshman in high school in 1996. In a small town near Buffalo, New York, I was a top student in biology and earth sciences and voraciously pursued these interests. In researching the interconnections in nature, learning about the DNA double helix and the energizing actions of mitochondria in human cells, I was transported into a strangely tantalizing and visual world that piqued my curiosity.
I explored scientific literature in the local library, coming upon ecology, then chaos theory. Meanwhile, I was learning how to play guitar and was drawn into the music of Jimi Hendrix and Janis Joplin. I was incredibly active and energetic and was constantly searching for the next rush through performances in the drama club or winning races in track. Note that the high was from healthy activities, not drug use. I was a healthy adolescent at the tail end of puberty.
However, as with many people who pursue activities that bring pleasure to them—in my case, music, science, and running—a crash eventually came. In the spring of 1998, the hallucinations, delusions, and paranoia began to manifest. I survived on little to no sleep. My symptoms were so extreme that by April, I needed the safety of a hospital so that I didn't hurt myself or anyone else. Doctors thought I was on street drugs, but in reality, I was experiencing intense mania that made me feel like I was spinning in countless directions at warp speed. It was terrifying.
My mania finally subsided with medication, but after a three-week hospitalization, I felt flat. I had trouble concentrating, even when I attempted to read books I loved. But a welcome change was that my social anxiety and severe depression were mostly absent. I made a beautiful impressionist chalk pastel in occupational therapy that others loved. My circle of friends grew wider, and I became the lead guitarist of a punk band. Although my time studying intense detail was gone, I had an exciting life balancing drama club performances, birthday parties, and high school dances. I was a popular dude, only made possible through medications, which counteracted paranoia.
After high school graduation, I made the tough choice to pursue biology over English in my freshman year. I yearned to be like my dad, a master in science. After intense study in biology, I eventually acquired creative talents and sought information about major world events. But times became tougher due to the freedom of being a college student and lack of structure.
I became manic again in September 2001. I slept little and had grandiose beliefs in my ability to save the world from terrorism. I fancied that my guitar playing would bring peace from Osama bin Laden. I was devoid of reality and rude and belligerent with loved ones.
After three years of alternating between dorm living and my parents’ house, I moved into formal transitional living in Buffalo in 2004. In 2005, I declared English as my new major at the University of Buffalo and won my Social Security case.
My psychosis never completely resolved, and I would occasionally hallucinate complex patterns. As I joked with friends in the car, I likened the patterns to functions in calculus--a subject in which I excelled in college.
Suicidal ideation crept into my mind for the first time in 1998. Yet it only became a tangible idea five years later in 2003, when I created a beautiful original chalk pastel, with a suicide note left for my family. Thoughts of suicide would repeatedly arise and surface with no warning for the next four years, until I finally followed through twice, in 2007.
In April 2007, I found solace and safety at the hospital from scary and restless agitation with minimal sleep. I was discharged per my request, but I was not of sound mind. A better treatment team might have recognized that.
My dad picked me up from the hospital and dropped me off at home, where I took an entire bottle of lithium and endured a severe cutting episode. I felt that I might as well have given up. I had no hope that I would ever feel good. This manic agitation, with three packs of cigarettes a day, was terrifying.
My final attempt at suicide in August 2007 left me with a frontal lobe brain injury. It was the result of a desperate attempt to take my own life by exiting the passenger side of an automobile on the thruway in rush-hour traffic. Recovery from this trauma and coma required a year of recuperation in inpatient units.
In 2008, I began a much-needed extended stay in a state hospital, where I began recovering from years of trauma, self-injury, and mental illness. This stay provided the genuine rehabilitation I needed. It even led to a volunteer job upon discharge that lasted several years, as a group facilitator of creative expression and smoking cessation. Looking back, an extended hospital stay earlier in my illness could have prevented my near-death experiences.
The resulting health difficulties from frontal lobe damage, such as poor impulse control and intermittent memory loss, have made my life more complex. Independent living was challenging. For example, a low-stress threshold due to my brain injury made it difficult to handle the large and crowded buildings where the housing agency assigned me to live. My stress, plus more responsibility outside of my group home, brought more unpredictable temper tantrums. These tantrums led to my eventual expulsion from the housing agency.
The system had difficulty understanding my needs because of my dual diagnosis of frontal lobe head injury and bipolar I with psychotic features. Between 2009 to 2016, I was able to move into an effective group home, which was a better environment for managing my stress. I was slowly moving toward independence, but the route proved painstaking. Once again, my stress became hard to manage, but I felt it was worth the struggle. As I increasingly realized that I function better when not living in close proximity to others, I became proactive in advocating for a home where I could be as independent as possible.
Luckily, I was able to advocate with my case manager for my housing and treatments before the COVID pandemic started. I felt strongly that I needed a safe place to be completely on my own before I hit forty. Currently stationed in permanent housing, I’m stabilizing. I am in a solitary, one-bedroom apartment, but regularly stay in touch with treatment providers. My flare-ups have steadily tapered off. Although I struggle with anxiety nightly, my psychiatrist, psychotherapist, neurologist, cognitive therapist, and case manager effectively help me manage my independence.
My journey has had lots of challenges, but I’m genuinely happy with my current circumstances. My frustration with community living has made me realize I am a loner at heart. I now enjoy studying science and history at my own leisure, and my original art is framed on my walls.
I hope that describing the last twenty-four years of my history with mental illness can help to convince others that mental illness is real and that treatment really does help. Medications have been instrumental in my recovery, and I believe education on the positive benefits of medication needs to be more widespread.
People like me know you don’t need to use drugs to hallucinate. It’s not your fault if you are paranoid. You cannot just “get over it.” But if you keep the faith and stay open and willing to work with your doctors to find the right medication, you will discover that staying alive really is worth it — it's more than enough!
David Meyers earned an associate degree in interdisciplinary studies from the State University of New York - Empire State College. He was awarded the E. Lester Levine Memorial Scholarship based on science writing and human services in 2016.