It’s Not Rocket Science

by Joseph Merlin Bowers

After moving to Pueblo Colorado more than five years ago, I became heavily involved in mental health volunteer work. I’m retired and in recovery from a serious mental illness. i’m on the boards of the Friendly Harbor. a peer run community center for people with mental health and/or substance use issues, NAMI Southeast Colorado, and Mental Health America Pueblo. I’m a peer specialist at the Friendly Harbor and a trained connections facilitator and In Our Own Voice presenter for NAMI. I care about speaking out on the issues surrounding serious mental illness enough to have overcome a lifelong morbid fear of public speaking. I’m now fairly comfortable doing that.

More than just speaking out and supporting people face to face, individually and in small groups, my passion is advocacy. I want policy change at every level of government and within the mental health industry-changes that would positively affect every family dealing with serious mental illness.

To that end, with the help of Bonnie Bowman, possessor of two pHD  degrees, NAMI Southeast Colorado board president and family member of seriously mentally ill individuals, I put together a local advocacy committee. It consisted of professionals, peers and family members, but didn’t stay together long. Unlike Bonnie and I, most of these people still have jobs demanding a lot of their time and attention. It was next to impossible to schedule things around most people’s obligations. By mutual consent we disbanded. Now the NAMI Southeast Colorado advocacy committee is mostly Bonnie and I.

We have been busy. Over the last couple of years I have scheduled numerous meetings with County Commissioners, state legislators and the current Lt. Governor while with some help from me, Bonnie put together a white paper of our five top mental health priorities for Southern Colorado.

I’ve established a bit of a connection with Dianne Primavera our Lt. Governor. We have met together on four occasions and discovered that we are both cancer survivors and while I suffer from what is probably bipolar disorder she had a brother who was a very successful lawyer but developed serious bipolar disorder and committed suicide. When I was telling Dianne about the Friendly Harbor and mentioned that the value of peers is controversial of some quarters she said that when she was diagnosed with breast cancer, the first people she wanted to talk to were survivors of breast cancer.

Bonnie and my five priorities are civil commitment beds at the Colorado Mental Health Institute at Pueblo, supported housing, Assertive Community Treatment, improved Assisted outpatient treatment laws and diversion from the criminal justice system. These are mostly state level priorities. In the Colorado legislature they passed legislation allowing anyone 12 and over to seek professional mental help without parental consent. We fear this allows minors to refuse needed treatment and want that amended.

I also have a connection with Andrew Romanoff. He has a decent chance of becoming one of our state’s two federal senators. The main thing we want at the federal level is the repeal of the IMD exclusion.

At the county level we seek commitment to a program called “stepping up.” This is a county level program intended to divert people into treatment rather than into our overcrowded county jails.

I have several friends now who have adult sons and daughters with serious mental illnesses who lack awareness or in one case refuses medication because of past bad experiences. A friends daughter is currently held in a facility in Northern Colorado where for some time they have been trying to restore her to competency so she can stand trial for some serious charges. She has been through the system so many times over so many years that the likelihood a her ever again getting into recovery is very slim. That ship may have sailed.

Another friend has a son with schizophrenia who refuses to take medication I think because of side effects. It may have been a previous bad experience. He is currently in jail. Rita didn’t tell me what happened. She had texted me some months before asking where she could take him to keep him our of trouble. She had been through the 72 hour hold process which just alienated him and made it harder for her to help. Now he is in jail for the long haul.

If there had been a  place I knew of near where she lives like the Friendly Harbor I would have suggested that. We are a peer run support facility somewhat similar to the clubhouse model like New York’s Fountain House. We do not treat people, but we support them in many useful ways.

That the priorities mentioned above of Bonnie and I are needed seems obvious to me. It also seems much less complicated than rocket science how to prevent tragedies like those that befell my friends with adult mentally ill children and many other families as well.

It needs to be easier to get people into treatment when needed-involuntarily if necessary. Once in treatment they need to be kept in treatment until truly stabilized. If in a hospital or institution there must be adequate support for them upon release. If these simple things were in place, the benefit to these families and society in general would be enormous. It is unspeakably frustrating to me that they are not.

 

Some of What it’s Like for Me to Live With a Serious Mental Illness

Joseph Merlin Bowers

This morning I started reading The Great Pretender by Susannah Cahalan. It was recommended by a mental health advocate I have a lot of respect for, DJ Jaffe. Susannah also wrote Brain on Fire which I have read previously.

An autoimmune encephalitis caused her to experience psychosis and other symptoms of serious mental illness.  So diagnosed, she was fortunate enough to have the true cause of her symptoms discovered and get properly treated and cured.

Her first book described this experience. She also discusses the experience in the first chapter of the second book. Her discussion has motivated me to write this blog. Though cured, Susannah lives with an unshakable fear that psychosis may return. So it is for everyone who has ever experienced psychosis.

I first became psychotic before turning 17 and went on to experience more than 20 years of recurring psychotic episodes with periods in between of seemingly complete remission. I haven’t had a major episode in more than thirty years and my last minor experience with psychosis was nearly twenty years ago now. Nevertheless, the first part of the title of the book I wrote about my experiences is Life Under a Cloud. The cloud represents the inescapable, ever present fear that psychosis could return at any time for reasons no one really understands at this point in our history,

There is nothing more terrifying short of impending painful death than the realization that one’s brain has been malfunctioning-that you can’t depend on it to tell you what is real and what is not-to be your most valuable tool in navigating life in an often dangerous and challenging world.

Living under a cloud of apprehension that I may again experience symptoms that render me incapable of escaping a fantasy world long enough to complete a homework assignment, fill out a form or perform a routine job task is a constant for me. I’m not constantly thinking of these things, but the cloud never leaves.

Almost as bothersome an apprehension and sometimes fear is uncertainty. I just don’t know for sure anything of real importance.

Is my disease physical, a medical condition? How important is genetics as a cause? I know prevailing theories and a lot of statistics but no facts or scientific laws that explain my illness.

I was a science major in college and I try to be very open and honest with others and, most difficult of all, with myself. I wonder did my episodes end because of effective treatment or is the nature of my illness such that they would have ended eventually anyway running their course perhaps in a similar amount of time. I’ve had episodes that were short lived and didn’t get aggressively treated but nevertheless went away.

Do I really need the medication? I once did fine for about six years without any. The last time I tried going off, I didn’t get psychotic. I experienced brain malfunctions of a different nature. Why was this? Was it bad timing-my being under too much stress at the time for this major  a change? Was it withdrawal symptoms from a powerful drug?  Antipsychotics have disagreeable side effects. Mine comes with about five pages listing things that, though in many cases extremely rare, have happened to people taking  this medicine. Nobody should take anything longer than necessary and not needed. Do I need mine? I think so but I’m not sure.

Who is the real me? My daughter was prescribed Ritalin in second grade for attention deficit. She did well on the Ritalin and graduated valedictorian from high school. She had been thought slow by kindergarten and first grade teachers. One day she asked me very concerned, were the good grades her or the Ritalin. When one takes a drug that affects the functioning of the brain, one has to wonder if this fundamentally changes who they are. Is it the real me I was meant to be on the drug or off it? I told my daughter that the disease fundamentally changes who you are and the medication brings back the real you. I believe this, but I’m not sure.

I have experienced grandiosity and a messiah complex. Among many other delusional things, I have believed I was Jesus in a different life in a different place. Today my brain is not racing or absorbed in delusional fantasy. I am perfectly capable of functioning normally. But still sometimes I have to wonder: was there ever any truth to any of those things my delusional brain has told me so convincingly so often in the past? Some believe in reincarnation. Some believe we all play different roles in different lives on different worlds and maybe different universes. This is all highly unlikely I acknowledge, but technically possible given the current state of scientific certainty. So sometimes I wonder. I believe these fantasies were the product of a diseased brain. I’m not absolutely sure.

Partly because of the state of the art and science surrounding mental illness, these are some of the apprehensions, fears, uncertainty and doubts I live with.

I don’t really seek pity or even empathy. I’m truly a very lucky man having been able to live a pretty normal, successful life in spite of my illness. Comfortably retired on a medication that has been very effective, having learned a lot of coping skills, with a good support system and a loving family, I am free to do exactly what I want to do with the rest of my life.

I recently read an introduction to a book of short novels by John Steinbeck. The writer of the introduction said that Steinbeck’s avowed purpose in writing was to help people get to understand each other better. I thought to myself “what a noble purpose.” I hope that I can help people who have never experienced psychosis better understand those of us who have.

What I have been doing since retiring and intend to continue to do for the rest of my life is to wage war on the scourge of mental illness and combat widespread public ignorance about it.

 

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Our Mental Health System is a Symptom of an Unhealthy Society

Joseph Merlin Bowers

 

I think most of us would agree that our brains are the most important part of our bodies. Yet, as a society, we don’t handle brain issues nearly as well as issues with all other body parts.

When someone calls 911 because of a crises like a heart attack, a diabetic shock, a seizure, a broken leg or anything like that, the first responders are medical professionals usually EMTs. When 911 is called because of a mental health crises, the first responders are almost always policemen. Why is that? In a healthy society wouldn’t one expect mental health professionals?

With almost any type of problem like cancer, heart disease or diabetes at the first sign of trouble, aggressive treatment is started. When someone becomes psychotic and lacks awareness, aggressive treatment doesn’t begin until the disease progresses to stage four and the patient is deemed a danger to himself or others or is gravely disabled. What?!!? Given the known value of early intervention, would that happen in a healthy society? I think not. If a professional did that with cancer, heart disease or any such thing, he or she would be sued for malpractice and probably loose their license to practice.

From cancer to measles with any type of problem with any other part of the body, we have worked long and hard seeking prevention and treatment. In virtually every area of medicine, for virtually every type of illness or injury we have made tremendous advances. Not so much for serious mental illnesses. Until we do, our society can not be considered healthy.

For a lot of reasons, there are very few long term civil commitment beds in Colorado. Our state mental institution in Pueblo now is entirely forensic. We have been sued twice and will be again because of a huge backlog of people awaiting competency hearings so they can stand trial for minor and sometimes major crimes.

When I meet with a policy maker, I usually tell them about an event that took place in 1964 in upstate New York and explain why that is meaningful to modern day Colorado: Believing that the Devil had forcefully removed my grandmother’s soul from her body and was inhabiting it himself waiting for an opportunity to destroy me, I went upstairs one night with a loaded shotgun to her bedroom. The plan was to kill the body. As the devil left the lifeless body, my waiting spirit friends would capture him and imprison him in inescapable confinement. The battle of good versus evil would soon be over with us good guys victorious! I probably had a plan for restoring my grandmother to life.

Reaching the top of the stairs, I looked through the open door to my grandmother’s bedroom directly across the hallway and saw her knelling at bedside obviously praying. Confused I went on down the hall. The Devil praying? I told myself that somehow he had been warned and was trying to fool me. I went into the room, cocked the shotgun and pressed the end of the barrel against her chest as she faced me.  I hesitated as time seemed to slow way down, and she reached out to me and said, “Joe don’t. You’ve never been mean to me.” Maybe there was too much doubt in my mind. Maybe I had one of those brief lucid moments that sometimes happen when one is in the midst of psychosis. Whatever the reason, I pointed the gun away from my grandmother and carefully released the hammer uncocking the weapon without firing it. I unloaded the gun and we went downstairs, I put the gun away and we waited for my uncle to come home.

That night they took newly 17 year old me to Middletown State Hospital where they began treating me as well as they could in 1964. I responded well to treatment and was released after about two and an half months in pretty good shape. There would be more episodes and more incarcerations, but partly because of this early intervention and fairly long stay in an asylum, I have gone on to live a fairly normal and successful life.

The galling thing is that in Colorado today in order to get into our state mental institution and stay for the needed two and a half months, I would have had to pull the trigger. Short of that there would be no room in the asylum for me.

How can we expect to ever get on top of the competency hearing situation when people often don’t get the psychiatric care they need before they become involved with the criminal justice system? Without proper care, almost everyone with a serious mental illness will sooner or later.

Could that situation exist in a healthy society? Because we have so ignored serious mental illness there have been and continue to be too many totally preventable tragedies, lives needlessly wasted, and people experiencing a quality of life much worse than what is possible.

A sports team or any team is only as good as its weakest link. A society is only as healthy as its sickest members.

 

 

 

 

 

A Review of the Movie “Joker”

Joseph Merlin Bowers

The movie Joker was controversial even before its release. NAMI national made the pre-release statement: “As many of you know the movie Joker is being released tomorrow. As we understand it, the joker is characterized as having a mental illness and later perpetuates acts of violence.

NAMI national has reached out to Warner Bros. about the film to discuss how they are talking about the issue publicly.

For your reference, we typically follow these guidelines:

NAMI does not encourage protests/boycotts which are tactics that can inadvertently publicize the film.

NAMI does not comment on films we have not seen.

When appropriate, we promote those with positive portrayals/messages.

If NAMI national is contacted by the media, we will respond with: NAMI is concerned by any media that perpetuates stereotypes and discrimination against people with mental illnesses.”

Having now seen the movie, I will comment.

I have lived with a serious mental illness nearly 60 years and I loved the movie and strongly endorse it. I hope it has as big an impact in a positive way as One Flew Over the Cuckoo’s Nest had in mostly negative ways.

It does portray the joker as having a mental illness and he does kill people and incite rioting. However, he is portrayed as a sympathetic character one can relate to and understand how he feels and his motivations.

In the climatic scene he states: “What do you get when you cross a mentally ill loner with a society that abandons him and treats him like thrash? You get exactly what you fucking deserve.”

The movie Joker turns out to be a serious indictment of the mental health industry and society in general.

Our society has largely abandoned the seriously mentally ill and we pay an enormous price for that in many, many ways day in and day out. And that is exactly what we fucking deserve.

To be fair some of us had good intentions striving to protect civil liberties. The problem with that is that freedom and liberty come with much personal responsibility. Even as small children are ill equipped to make life altering decisions, so are psychotic adults. In these cases civil liberties are not a gift but a burden too heavy to be borne.

The joker also complains that mental health professionals don’t listen to him and don’t understand him. I have encountered some who never try to get into the head of the individual patient. They have their standard treatment plans for a specific diagnosis that they apply to all so diagnosed and standard, rote questions that they ask each session. But there are, in my experience, many excellent, dedicated professionals who do listen, do attempt to understand each individual and streamline a treatment plan to that understanding of each individual.

For most of my life, I have felt that our societies treatment of our seriously mentally ill has been steadily getting worse in many respects. Currently, I believe that we have turned a corner. There is greater awareness that we have created a serious crises and greater desire to make things better. I have more hope now than even a short time ago for a better future for families dealing with serious mental illness.

Still today each day we see many totally preventable tragedies. Many, many lives are needlessly wasted while experiencing more hardship and suffering than necessary.

When we decided to abandon the seriously mentally ill, what did we expect?

 

 

 

Mental Illnesses are not Casserole Illnesses

Joseph Merlin Bowers

Someone on Facebook posted that schizophrenia is not a casserole illness. I liked that way of putting things so much that I decided to steal it.

What she meant was that when someone is diagnosed with schizophrenia people don’t come by offering food, starting fund raisers or ice water challenges trying to help the family any way they can. So it is with any mental illness that affects behavior. If the family is not shunned altogether, too often the mother is blamed.

This is not true of any other type of illness that I know of. Mental illnesses are major tragedies for families. The serious illnesses are very debilitating. People with such a disease die as much as 25 years younger than those without. A few years back I visited a traveling Vietnam memorial which got me to thinking: was I lucky or unlucky? Despite graduating from high school in 1965 I didn’t go to Vietnam probably because I had been diagnosed with paranoid schizophrenia and spent two and a half months as a patient in a state mental institution during my junior year. Doing some research I found that a significantly higher percentage of people with schizophrenia died within ten years of their diagnosis than soldiers died in Vietnam. Mental illnesses kill people just as dead as cancer, heart disease or anything else.

My family, like many others, felt that my having a mental illness and spending time in mental institutions shamed the entire family. The subject was never spoken of by anybody in my family. One of the big tendencies those of us with such illnesses must guard against is self-stigmatization. After all society has long told us we should be ashamed.

I believe that that is starting to change.  As more of us speak out and, with treatment, live fairly normal and successful lives, prevailing fear and ignorance lessens.  When I make a NAMI In Our Own Voice presentation, when I get to the part where I talk of my hopes for the future; mine is for the day when mental illnesses are casserole illnesses though I have yet to express it that well.

Until that day comes, I struggle to think of our society as civilized and humane.

 

Then and Now: Changes in Mental Health

by Joseph Merlin Bowers

I first started in treatment for a serious mental illness in 1960. I was first hospitalized in a state mental hospital in 1964. Off and on I have been involved in mental health as a patient or advocate every since. In those 59 years I have seen many changes in the mental health system, society, public perception and public awareness.

Available medications and treatment programs and options have come a long way. Paradoxically, the likelihood that a family like mine of limited means dealing with mental illness will be able to access available treatment is much less. Those that do get the help they need do so with great difficulty.

It used to be too easy to get someone committed involuntarily. Now it’s too hard.

There are many fewer psychiatric beds available now than in the past. The number steadily declines. In some states like Colorado where I now live there are almost no long term care beds for civil patients.

Many state hospitals have closed. The remaining ones house many fewer patients than previously and have been largely transformed from civil institutions to forensic institutions. Civil patients unable to access needed care often wind up in the criminal justice system. This creates greater demand for forensic beds. This unfortunate situation is self-perpetuating.

The hospital psych wards that came about to replace vanishing state hospitals have mostly been closed because they were losing money and converted to profitable uses. Although parity laws have been passed they are not widely adhered to. The last time I was seriously psychotic (1986) I checked myself into a psych ward and was kept there until much better. This is a very uncommon occurrence nowadays.

It is easier for someone with a mental illness to get various types of disability and government funded incomes, but the well intended laws are poorly written. As an example: a person on SSI loses it if he accumulates as much as $2000 dollars in savings. As the end of a month draws near, people are frantically spending money on unneeded, unwanted things to avoid losing their benefit. You tell me how this makes sense or helps them better their living situation.

Stigma among mental health professionals is less widespread. When hospitalized in the ’60s no one saw any point in telling me anything such as my diagnosis, prognosis, available treatments or success rates. The psychiatrists I saw then largely asked prying, personal questions, took notes and offered no reply, comment or feedback. Bedside manner is generally much better these days. Good professional, patient communication is more common. While there are still professionals with disdainful opinions of the mentally ill, this is less commonplace.

Much of the responsibility for dealing with mental illness has shifted from the mental health system to the criminal justice system.

There is greater awareness that we are in a mental health crises.

Younger people have less stigma about mental illness. They are much more likely than older people to admit to a diagnosis and talk about it. Many though are disdainful of medications. Because smoking pot makes them temporarily feel better, they think that pot is what they need.

Civil patients are commonly turned out with little support before they are ready to reenter society. This frequently results in a preventable tragedy or a wasted life.

Many, many things that were previously considered personality traits are now included in DSMs (Diagnostic and Statistical Manuals) as diagnosable mental illnesses. I suspect this is because the industry is driven by insurance companies and people want to get paid for all the treating they do or receive. The unfortunate result is that resources are diverted from those with truly debilitating conditions.

I think there is greater awareness that much tragedy could be prevented and money saved if we did a better job of getting people into treatment before their illnesses got to stage four. People are starting to realize that substance abuse should be and is more effectively treated as a disease and not as a crime. There is almost always an underlying mental condition involved in substance abuse.

There is greater reluctance to use terms like mental illness, crazy or the like. Yes words matter but when someone like me with a mental illness objects to terms like these, I am acknowledging that there is something shameful about having a mental illness-self-stigmatization.

More people are speaking out about their illnesses. This results in less fear and ignorance-the basis of all prejudice and discrimination.

The homeless population rather than fluctuate with the economy as was the historical pattern, hit a high level decades ago and has stayed high ever since. Our jails and prisons are shamefully overcrowded. These are to a degree unintended consequences of deinstitutionalization.

This is a pretty good summery. I’m sure I’ve failed to think of a few things.

 

 

 

 

 

Stigma Does Exist and it is a Problem

by Joseph M. Bowers

Many of us are frustrated by the seeming endless availability of grant money for virtually useless anti-stigma pr campaigns when that money should go toward things like supported housing that do help significantly. We would usually prefer using the word discrimination where stigma is often misused. Also those of us with mental illnesses need to guard against self-stigmatization. Cost and availability are far more often the cause people don’t seek treatment, but stigma does exist and it is a problem.

Our community is more than 50% Latino. The local judge over mental health court and problem solving court has told me that his biggest issue in trying to help the sick people who come before him is the refusal of their families to support his efforts. The Latino culture is somewhat macho, ignorant about mental illness and very reluctant to admit that there could be any such thing in their families. I understand that stigma also runs high in the black community.

No one can convince me that our society’s response to mental illness would be as shabby if mental illnesses were thought of the same as any psychical illness or even Alzheimers or dementia.  What is that if not stigma and is that not a problem?