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.
How Do We Protect Our Adult Children With Serious Brain Disorders In a Broken System?
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