On December 6, 2017 my family made a fateful decision to call 911 and seek help for my son. He had become suicidal and was hurting himself. At the time, he had spiraled into a state of psychosis, something our family had never experienced before. He had decompensated into a false reality of conspiracy theories, voices, and hallucinations. His inner mind slowly turned him inside out – his thoughts became his truth and his reality became an illusion. He was convinced that Jesus Christ had returned, and he had been left behind and that at any moment the government was going to start killing everyone unworthy of redemption. My son was involuntarily committed to a hospital by the responding officers for being a danger to himself and others.
By December 9, my sons 22 birthday, he was in a jail cell with two self-inflicted black eyes, trying to hang himself with a sheet to escape this world and the horror going on in his head. He spent his birthday in a suicide suit in a jail cell beating his head into walls.
I looked at his mugshot, caught in a surreal mix of emotions not understanding at all how this could happen or why? His blank flat eyes with an emotionless stare looking back at me from two bruised eye sockets literally penetrated me to my soul. How could this happen?
Everything that could go wrong for my son, had. My son has been in jail for 9 months. He faces two felony charges. First Degree Attempted Murder and Attempted Murder with A Weapon for an alleged incident that happened in the hospital where he had been placed on an involuntary psychiatric commitment. His alleged weapon was a comb, a comb that someone on suicidal watch should never have had access too. The weapons charge carries a life sentence if he were convicted. My son’s life could be ruined, even if he escapes a lengthy prison sentence these types of charges will limit his abilities to work, rent an apartment, or function in society for the rest of his life. This tragedy unfolded because my son developed a brain disease, a disease that affects his ability to understand reality. He has been criminalized and ostracized for having its symptoms, which he has no control over.
Through a subsequent hospitalization, after being bailed out briefly, my son was officially diagnosed with schizophrenia. A disease that is in my family tree, both on the paternal and maternal branches but I never in a million years thought it would show up in my child. I guess no one does. It’s like one day your child is driving along the roads of life doing well and then schizophrenia slips into the driver’s seat and hijacks everything. Now I log in weekly and add money to my son’s commissary account just to keep my son in socks because he wears holes in them by pacing the halls of a felony dorm. He is now housed with murderers, rapists, and other violent offenders. We went from thinking about his wedding to hoping he survives his incarceration.
The past nine months have been relentless. He has remained highly suicidal for most of this incarceration. Only recently did his medication start to work and bring him back to a place where he no longer is actively hurting himself or desiring to die. Medication is imperative to his wellness and we are blessed that he is housed in a facility that allows him that. The mental health department of the jail has been very in tune with my son’s psychiatric needs and for that I am thankful. I know that we are blessed. This is not always the case in our nation.
This disease stole everything. It is the criminal – not my son – he is just an unwitting host who is paying the price for its presence in his body.
He is far from alone.
Now because of my son’s sickness and his absolute tragedy in the “mental health system,” I have become an advocate for those living with serious mental illnesses in America. I am amongst many other parents who know the painful frustration of having absolutely nothing in place to help us just keep our kids safe and healthy. We must fight the government to get them treatment. No other illnesses warrant this type of action. If your child develops cancer you are referred to specialists, your insurance company cannot drop you and there are even multi-billion dollar hospitals dedicated to nothing else but cancer research for your child. If your child gets schizophrenia you get an insufficient 72-hour psychiatric hold and you only get that when your loved one is trying to kill themselves or others.
Why do we have to be so reactive? Why can’t the US allow us the benefit of being proactive in the care for our children?
It is untreated serious mental illnesses that are far too often the problem, and people need to start realizing that. Treatment works. With consistent medication and a support system of a psychiatrist or a social worker, those with serious mental illnesses can live without issues. They can manage their symptoms, even if a full recovery is not an option, which unfortunately is the case with chronic psychiatric illnesses.
Psychiatric illnesses are just as disabling and destructive to the person as any other illness. The absolute toll they can take on a person is astronomical. The caregivers in this country have no real option to lean on as a standard of care. We are left to fumble in the dark, looking for some shred of light, all the while hoping our child does not kill themselves or harm other people during a psychosis. Calling 911 often ends in our child being arrested or in more tragic instances being killed by the police. The mentally ill are the victims of a very broken system that no one seems to be in a hurry to fix. Those that are sick are paying the price, they are being abused because of our apathy, and they are too ill to even know it.
Proper psychiatric care is so hard to secure because treatment for those that are 22-64 years of age in America has been choked off by the discriminatory and barbaric 53-year-old Institutes of Mental Disease Exclusion in the Medicaid/Medicare reimbursement statutes which will not pay any facility with over 16 beds to treat a psychiatric illness. This exclusion inevitably closed the very hospitals we now so desperately need to treat our children. Those beds have been replaced by jail cells, as our kids have now been diverted into the judicial system.
The jails and prisons have become the new asylums. As those hospitals closed, those with serious mental illnesses have just been displaced to mental health wards inside of jails or “left to die with their rights on”, infested with lice talking to themselves on street corners, often being raped or abused repeatedly before succumbing to the elements just because they are too ill to assess their need for help. Often their loving parents look on in horror as various laws tie their hands from intervening and saving their own child from what can only be described as an unwilful and slow suicide.
I now frequent Facebook groups that showcase lost mentally ill children who have slipped away in the darkness, often to be lost forever sucked into a world of vagrancy, delusions, hallucinations, and abuse at the hands of a very cold and unsympathetic society. Their parents desperately looking for any shred of information that their child is alive through posts and pictures of homeless people submitted by members across the country. Sometimes someone will find a missing child, often now grown, dirty and delusional. The reunions are not always joyous, the last one I read the son was too ill to remember his mother and he ran away again shortly after.
I am also active in several support groups for parents that grieve the completed suicide of a child that the system ultimately failed. I have friends who have had children shot by the police, children who have jumped to their death from ambulances, children that have been kept in solitary confinement for years and robbed of contact with their families the entire time. All this suffering just because they became ill and our country has no better solution in place currently to help them.
It’s a whole other world that you do not know about until your child gets sick in this way. And then you are thrown at warp speed into what can only be described as this surreal world where you scream for help as loud as you can, but no one can hear you. You are screaming for help that you so desperately need and deserve but nobody comes to rescue you…ever. As Ron Powers book title says so well “No One Cares About Crazy People”. It is just you, and others like you, trying to make sense of total insanity. Politicians don’t want to touch the situation, the jail personnel don’t know how to change it, the Emergency Rooms don’t have the resources to handle it, and your family just stares at you and tries to understand but they don’t really know how to help either.
You are alone in a void where no one has an answer, and even worse no one even cares to try to answer you. They just shuffle you along and want you to stop using words like “suffer” and “schizophrenia”. They want you to deny your own pain and act like you are ok, that this abuse, neglect, and discrimination is the best we as a society can do for our loved ones. That is just not true, this is America, we can do better.
We just can’t pretend this is Ok anymore. Our children are dying out here for lack of care. They are living behind dumpsters, rotting in solitary confinement, being killed by police. This is not OK. This is discrimination. There is absolutely no parity of treatment for those with physical and mental illnesses in the United States. Those living with serious mental illnesses like schizophrenia, bipolar and schizoaffective disorders deserve the same quality, compassionate care as anyone else living with any disorder or disease in this country.
If the government wants to claim they support parity they must abolish that 50+ year IMD Exclusion in Medicaid/Medicare. I cannot imagine that would be accepted by any other group of people. That is the epitome of discrimination based on a diagnosis. Can you imagine if you were denied treatment due to a diagnosis of AIDS, or diabetes or heart disease? If millions of people were excluded from treatment based solely on the diagnosis they have for any other illness there would be riotous noise amongst the masses over it. But for those with serious mental illness, there is silence.
Mental Health Awareness has become a hot topic as of late. We have a nationwide drive it seems to learn more about mental health. I applaud that. But I must say we don’t need more mental health awareness we need serious mental illness action. We need treatment that is proven to work. We need more assisted outpatient treatment & more funding for research to find better more effective treatment options. We need more comprehensive support for those dealing with serious mental illnesses like schizophrenia, bipolar and schizoaffective disorders on every level of their lives. Only taking action will get them off the streets, out of the jails and into safer healthier situations. Awareness cannot do this job. We need action. Action in the form of more training programs for Crisis Intervention Teams, more support, and resources for social workers on the front lines, housing, and community outreach programs that work to bring these people to a higher level of functioning in society.
The recovery model of mental health excludes many of the people most severely affected by serious mental illnesses. There are individuals who do need to be hospitalized for longer periods of time. Individuals who are so severely ill, recovery is not a possibility. In our society, we do not like to face certain truths because they are unpleasant. The truth is that there is a small percentage of people who are considered untreatable and will need a much greater level of intervention on their behalf by psychiatric and medical staff to function. It is much better for them to be cared for in a psychiatric hospital full-time than to live in unsafe conditions either at home or more likely on the streets or in jail. The recovery model doesn’t work for people who have chronic psychiatric illnesses and it is cruel to try to make someone adhere to it when it is an impossibility for them. Asking for recovery for some people with schizophrenia is like asking a quadriplegic to get up and run a marathon. It is demeaning and absurd.
I look forward to a future where all of the illnesses are treated proactively rather than reactively. By doing so, countless tragedies and senseless suffering will all be avoided. Isn’t it time we do the right thing and finally face this situation head-on as a united force. We need to eliminate the discriminatory Institutes of Mental Disease Exclusion, get more AOT programs in place and move forward in caring for the millions of people in the United States who suffer in silence. We need to stop worrying just about awareness and start taking action.
We can be aware a ship is sinking, but unless we take action all on board will perish.
If you would like to get involved in changing the United States policies on the treatment of those living with serious mental illnesses like schizophrenia, bipolar or schizoaffective disorders I would encourage you to join The National Shattering Silence Coalition (NSSC). We are a coalition of like minded individuals who are advocating on behalf of those who are the most severely ill in our country. If you agree that it is time for action, not just awareness, please join our team! We would love to have you working with us to destroy the barriers that millions of individuals face daily in our country in getting the treatment they deserve and the care and support their family needs as they care for someone living with these brain diseases.