Joseph Merlin Bowers

Perhaps partly because people refrain from using the politically incorrect term “mental illness,” the term “behavioral health” is now often used by people talking about mental illness. While this term may have some applicability when discussing substance abuse it has nothing to do with any mental illness that I know anything about. I find its use when referring to my disease highly insulting. It’s insinuating that all I need do to successfully deal with my serious brain disease is modify my behavior. I wish to God it were that easy.

Mental illnesses are physical brain disorders with biological and chemical causes according to current best science consensus. Brain imaging shows differences in brain structure and function between people with and without mental illnesses. One can not fix this through simple behavior modification. I have been mostly symptom free for thirty years now through medication, developed coping skills and a strong support system consisting of professionals, friends and family. I have found an effective medication through trial and error. I have learned about precursors and triggers and ways of reacting to them. I have found an outlet and resolved personal issues and demons through writing an autobiographical book and blogging. And I have learned to openly and effectively communicate with professionals as they can’t help with the goings on in my mind of which they are unaware. Some of that may be behavior modification, but I consider it mostly acquired knowledge and maturation. Also, as with most of us, none of the rest of it could possibly have allowed the largely rewarding and productive life I have led without the medication.

There are two major schools of thought as to what causes these brain abnormalities: the trauma school and the biochemical school. There seems to be a genetic factor in mental illness and trauma certainly can cause serious mental issues. There are exceptions and problems with both explanations. I tend to think things like schizophrenia, bipolar disorder and major depression have biochemical causes while things like PTSD are caused by serious trauma. Problematically, with the former there sometimes can not be found any relative or ancestor with a similar disease and with the latter not everyone who experiences serious trauma develops PTSD or something similar. For us to truly get a handle on causes and treatments, much genome and neurological research is needed.

A substance abuser at least initially can choose not to take a potentially addictive substance. In this sense his affliction can perhaps be thought of as poor behavioral health. To end his addiction he needs to quit the substance which involves changed behavior. I think there is a lot involved in getting clean, but behavior is a major factor.

My psychotic, bizarre behavior was caused by my disease. There was never any choice involved. My behavior did not cause my disease. I don’t foresee the mental health system getting, as it needs to, much more effective in treating serious mental illness until it is thought of and referred to as serious mental illness and not behavioral health.

Joseph Merlin Bowers

The word stigma literally means “mark of shame.” There is and should be no shame in having a serious mental illness. When people talk of stigma they are using a sanitized word for discrimination and prejudice.

When looking for ways to combat something, it would seem logical to look for root causes of that one wishes to combat. The major root cause of prejudice toward and discrimination of people with serious mental illnesses is bizarre, unsettling sometimes dangerous behavior caused by untreated symptoms of the illnesses. Wouldn’t it seem logical to combat the problems by getting people into prompt, effective treatment? Combat “stigma” with things like more psychiatric beds, housing assistance, job training and scholarships for people wishing to become psychiatrists, psychologists and social workers-things that might actually help people with serious mental illnesses.

Instead of investments in these kinds of things what we see over and over is money spent on largely ineffective PR “anti stigma” campaigns. By diverting funds from potentially useful purposes, well intentioned people contribute to the problem by making timely, effective treatment more difficult to come by.

Rarely is public money invested in beds, housing, job training and scholarships. Conversely, there always seems to be money available to “fight stigma” in very ineffective ways. Why is that?

A Rose by Any Other Name

 

by Joseph Merlin Bowers

I have a friend who is a dedicated and effective advocate for people like me who have serious mental illnesses. Living in a politically correct world, she asked me once what term I would prefer when someone refers to the mentally ill. After all we are told that words matter. Perpetuating stereotypes is the cruel consequence of words like crazy, lunatic, nutcase and the like.

I spent some time trying to think of the perfect word that would be descriptive, non-derogatory and accurately portray one of us with a serious disease of the brain. After some time I came to realize that I just don’t care and I probably should not. Two quotes come to mind: Shakespeare-“A rose by any other name smells just as sweet.” Brene Brown-“Loving ourselves through the process of owning our story is the bravest thing we’ll ever do.”

Whatever word one uses to describe a serious brain disease, what matters is the image the word conveys to the listener and how that listener reacts to that image. I don’t care what you call me. I do care how you react to me and treat me.

I totally own my story. My story involves mental illness. When I went up the stairs in my house with a loaded shotgun intending to kill my grandmother, I was totally bat shit crazy. Sometime latter when in recovery, I apologized to my grandmother for scaring her badly. She said that the doctors told her that it wasn’t really me that assaulted her. That is only true in a sense. I would never have dreamed of harming  my beloved grandmother when my brain was healthy and operating normally. What I did had nothing to do with who or what I really am when healthy. But in another sense it was me. In the grip of insanity, I did what I did. It was me. It wasn’t anybody else. I can’t own my story without acknowledging that.

I belong to the biological explanation for most serious mental illnesses school of thought. I’ve seen brain scan and activity images showing physical differences in the brains of schizophrenics and people with bipolar disorders. When I first encountered this information I had two simultaneous reactions. My first was dismay. If my disease is a physical deformity what hope do I have of recovery. I can’t just change my behavior or my way of looking at things and reacting to events.

 

My other reaction was a feeling of liberation. My disease was not my fault. It was not my family’s fault. It was nobody’s fault!

 

I have friends whose stories are much harder to own than my own. Doing so requires much courage and strength. We have done things we will always regret. We wish to hell we could go back in time and undo what we did. To own our stories is necessary to put them behind us, get on with our lives and live in the now, looking to the future. We know the science of why we behaved in a manner uncharacteristic of who we really are.

 

We are ashamed of nothing. To react with shame to words like crazy, lunatic or nutcase is self stigmatizing. It involves buying into the fiction that having a mental illness is something to be ashamed of. What other disease of what other organ should one be ashamed of?

 

When I acted crazy it was because I was crazy. I would prefer to have you say I was crazy than something like “a soon to be consumer of mental health services”.

I have a brain disease called bipolar disorder and have often experienced psychotic features. My symptoms have often been severe and debilitating. In learning to deal with this disease well enough to live a rewarding and productive life, I have relied heavily on mental health professionals. I could never have had a decent life without a lot of help from them. I owe the profession a great debt. Yet I expect to go to my grave carrying a great deal of resentment toward the profession in general.

Although I suffered many years with recurring psychotic episodes, I have been mostly symptom free for thirty years now. I am pretty high functioning. My wife and I have been married more than 41 years now and have raised three children who all all now healthy, responsible adults. I have earned a BS degree from a major university, held down demanding jobs, performed them well and retired comfortably. I think it fair to say that I possess at least average competency and intelligence. Yet many mental health professionals I deal with treat me with infuriating condescension.

Clearly they are the “all knowing doctor” and I am the somewhat defective patient badly in need of direction from them. Thirteen years after my first institutionalization in a state mental hospital, I was told for the first time what my diagnosis was but only at my insistence. The attitude seemed to be that there was no point in telling me anything about my disease. Can you imagine never being told you have diabetes or anything about the disease?

In fairness to the profession, things are much better now. Most pros try to develop good two way relationships with their patients these days but I still encounter a very annoying degree of condescension from professionals.

Since retiring some years ago, I have become a very active advocate for the mentally ill. I am a trained NAMI connections group facilitator and In Our Own Voice presenter and I sit on the board of a community center for people in recovery from mental illnesses and represent this organization on the board of Mental Health America Pueblo.

The community center board is roughly 50% consumer and 50% professional. At least two of us consumers I would consider highly intelligent with much to offer. We get to speak up at meetings and seem to be listened too, but we both wonder if anyone really cares what we have to contribute. Most decisions are made by the same three individuals-two professionals with many years experience at the local state mental health hospital and one non-consumer with a lot of experience with non-profits. The views of the non-consumers just seem to carry more weight than those of the consumers.

I was asked to represent this organization on the board of Mental Health America Pueblo where I am the only non-professional sitting. My experience there has mostly been positive. However, a recent event perfectly illustrates the source of my frustration.

We are awarding the founder of the community center, who has suffered much of his life from debilitating mania and depression but has done some awesome things to help people just the same, the appropriately named Phoenix Award.  At last week’s board meeting I was asked by a fellow member to provide a file and picture of this man. Two days later, at a community center agenda meeting I was told that the managing director had a good picture that he would send to my email from which I could then forward it to the individual who needed it.

Later I received an e-mail from the MHAP board member asking when she would receive our submission.  I forwarded this, wrote the bio and sent it along with a request for feedback and the picture to the managing director, intending to send it to the MHAP board as soon as he returned it to me. He replied that a different MHAP board member had emailed him and he had promised to send her the bio and picture the next day. He would review what I had put together.

The following day he copied me a bio and picture he had submitted. My piece had been discarded and and a different biography was submitted in place of the one I wrote.

I don’t know if this seems like a big deal to most, but I am furious. When for more than 50 years one has been treated as just a little bit inferior and just a little bit subservient this kind of thing is grating.

This other board member from MHAP had gone  around me (even knowing that I had been asked for this material) to my organization’s leader who in turn rejected my work with no explanation. What this says to me is that I am not on the board to be a full functioning contributing member but rather as a feel good figurehead. “Oh aren’t we tolerant to allow one of these people to sit on our board.”

Maybe I’m overly sensitive but having turned 70 recently, I’m just too old to accept being marginalized and insulted.

 

 

 

by Joseph Merlin Bowers

I first became aware that the mental health system in this country was badly broken in 1979. Getting really sick toward the end of that year, I was arrested, thrown in jail, subjected to psychical restraints and solitary confinement when I knew I belonged in a hospital. I planed to sue somebody all the time I was incarcerated. After my release, I got no support or encouragement from my court appointed lawyer in this endeavor. Lacking the resources to shop for another lawyer, I let it go.

Highly pissed off, I didn’t blame any particular individual or group but the system as a whole. Since 1979 I have done everything I could think of to fight for reform. Being pretty powerless, I mostly watched feeling helpless as things slowly but steadily worsened-until this week.

As the passage of the Cures Act became more of a certainty, I shed many tears. This momentous event is both bitter and sweet for me. It represents the first positive step in the right direction to occur in my nearly 70 years on earth. There is much yet to be done, but this is a really solid foundation on which to build. I am overjoyed. But my tears are not just tears of joy.

How could one not reflect on the untold pain and suffering of the afflicted and there loved ones as tens of thousands of lives have been needlessly wasted since 1979. Suicides, death from confrontations with poorly trained policemen, imprisonment for crimes both serious and minor that never would have occurred had illness been treated promptly and properly. The sustained high levels of homelessness since the beginning of deinstitutionalization.

There have been so many needless casualties in this long often futile battle. My heart bleeds for so many I know or have known and so many I’ve only heard of or imagined.

But real progress has occurred. If we press the advantage and continue every effort toward further reform, the casualty count will diminish. Sad tears will become fewer-joyous tears more common.

Joseph Merlin Bowers

I have a long history of serious mental illness and psychosis. I have been incarcerated in state mental hospitals and jails on a number of occasions. Despite this, I had never spent a great deal of time with people with similar backgrounds who have experienced similar symptoms of similar diseases. Volunteering the last year or two at a community center for people in recovery from mental illnesses, I now have.

It probably shouldn’t have come as a surprise to me that I have bonded with these people so easily and to such an extent. I am a people person who has established strong friendships wherever I have gone, but I had never connected with people like I have here. Those of us who have been psychotic connect with each other like we just can’t with “normal” people. It’s probably true that survivors of other diseases such as cancer feel a similar kind of connection.

I have been doing everything I could to advocate for the mentally ill for a long time now. Until recently it was kind of impersonal and maybe even idealistic. I saw the mental health system as badly broken and was trying to help a largely amorphous, nameless, faceless, abandoned demographic. I was trying to help right a great wrong.It’s different for me now.

Here at this community center I spend a lot of time with people in or just out of the state mental hospital. Most patients in state mental hospitals now days are forensic patients. They have done some terrible things. I have learned from my association with them.

I have learned that some truly wonderful people can and will do some awful things under the influence of a serious mental illness, and I have learned that these destructive acts are not characteristic of who they really are when well. I have learned that we can and do get better with help. When the system gets someone into treatment they can and do do wonderful things. A number of my dear friends here have made great progress. Who they are now is much more representative of who they really are and who they were born to be. It is so gratifying and inspiring to see the strength and courage these people exhibit to get on with their lives after terrible tragedy. I don’t know if anyone who has never been psychotic can imagine the nature of the demons these people have overcome to get where they are. My friends are getting another chance at life and the world will be the winner for it.

Now I am doing everything I can to help not so much to right a great wrong, but because I truly love these people. I don’t know if it is possible to feel so much love and compassion for people who have never suffered greatly. These people have and I would literally be willing to die for them. I love them that much. My great joy in life now is to see my friends going forward. I don’t sleep as well as I used to. My life has much more emotional and dramatic-and it is much richer and joyful.

 

 

Involuntary Treatment Made a Decent Life Possible for Me

 

by Joseph Merlin Bowers

 

I had just turned seventeen in early 1964 when I went upstairs in our house carrying a loaded shotgun intending to kill my grandmother. I was convinced that her body was being inhabited by Satan. He had surreptitiously cast out my grandmother’s soul and entered her body himself waiting for a chance to kill me, God. This dangerous situation presented a rare opportunity. If I killed my grandmother’s body, my spirit friends could capture Satan’s soul as it left imprisoning it forever. Without their leader, the forces of evil would be in disarray and the battle of good versus evil would end quickly and decisively with the good guys triumphant.

Reaching her bedroom door revealed her knelling bedside in prayer. I tried to rationalize this, but enough doubt had been cast about my fantasies that I didn’t actually pull the trigger although I tried hard to convince myself to go through with it. A lot was at stake after all.

That night was spent in Middletown State Hospital in lower New York State where I would remain for two and a half months being treated for what was diagnosed as paranoid schizophrenia.

I was a minor and involuntary treatment was allowed. I responded well to treatment and was reasonably sane when released.

Several years later I was working in Middletown when I again became psychotic. I wandered off my job site believing I was James Bond agent 007 on a mission in the states. I entered an unoccupied building upon running out of gas in front of the house that had an unlatched door. When you are psychotic, there are no coincidences. Running out of gas and the door being unlatched were proof positive that this was my house where I stayed when in the states.

When the owners returned I wound up in jail charged with trespassing. After a night in jail I was taken before a judge. In this episode I believed the authorities were my friends trying to subtly give me clues to what my mission was and where I should be doing what. When the judge and to two Bureau of Criminal Investigation arresting officers expressed the opinion that I should sign myself into the mental hospital, I did so. Again I responded to treatment. This was technically voluntary treatment, but the relevant fact was that treatment helped.

Starting at seventeen, I experienced 23 years of recurring psychotic episodes with periods of good health in between episodes. Some might argue that some episodes just ran their course and ended without noticeable treatment and that sometimes the treatment was voluntary. I believe that treatment was necessary to bring me back from the worst episodes and it was sometimes involuntary.

What often happened with me was that when psychotic I pretty much quit sleeping. The longer I went without sleep, the more wired I got and the more psychotic. In these cases, I believe, large doses of antipsychotics were necessary. If nothing else they enabled me to resume sleeping which in itself was a huge help to my nervous system.

An episode in Tucson fell in this category and treatment was definitely involuntary. I had been more mildly psychotic once before after getting married; and when I became ill again, my wife recognized the situation early on. She went to the counselor I was seeing regularly. I was able to convince her that it was my wife who had a problem. In desperation my wife went to the police who told her they could do nothing unless I committed a crime. This was 1979 well into deinstitutionalization

Eventually I set two small fires-the first part of an imaginary ritual and the second intending to destroy what I believed was an ancient, evil demon. I got arrested and charged with arson. I spent a lot of time in the Pima county jail and a little time when possible in a psych ward in a local hospital. At the jail I experienced being hogtied. I found myself lying on my bely on the jailhouse floor with my wrists and ankles bound together behind my back. I also got to experience solitary confinement.

Eventually at the jail they started giving me liquid Thorazine. During the brief periods when I was in a hospital instead of a jail, I was treated. In time I recovered from this episode.

I had 23 years of recurring episodes followed by what has been 29 years mostly symptom free. I feel it not a coincidence that my medication was changed to what I continue to take today 29 years ago.

With the well periods between episodes and the long good streak, I have had a decent life. I have been married to the same woman more than 41 years and we have raised three healthy children who are now contributing adults. I got a BS degree from a large university and have held down numerous jobs. I have among many other things fought forest fires for the Forest Service, worked on oil rigs and my last job was in a large power plant mostly as a lab tech. That job paid pretty well and had good benefits. I retired from it comfortably after 29 years.

Some might argue that my episodes would have eventually ended without treatment. While sometimes perhaps true the bad episodes I believe required serious treatment. The fact that I have done well as long as I have has to be a testament to the medication and to the things I learned over the years often through treatment.

Some might argue that the treatment wasn’t always involuntary, but sometimes it was.

I’m near seventy, healthy, a husband and father who is retired with enough money coming in. None of this could have happened without involuntary treatment. My civil liberties were not taken away when force medicated and treated. I was instead liberated from the tyranny of serious psychosis.

by Joseph Merlin Bower

According to Webster’s New Universal Unabridged Dictionary: Stigma: 1. a mark of disgrace or infamy; a stain or reproach as on one’s reputation. 2. a characteristic mark or sign of defect, degeneration, disease, etc.

Many of us with mental illnesses feel that we are unfairly stigmatized. One can argue over semantics: is it stigma or discrimination, prejudice, even hatred? Whatever it is called large groups of the population believe there is shame in having a mental illness. My mother and I both spent time in a state mental institution, but our illnesses were never spoken of in our family. One assumes that is because we brought shame upon the entire family: a stain or reproach upon our reputation. A real danger for people like me is buying into this nonsense and self stigmatizing.

The zealousness with which a district attorney pursued her duty of protecting the public from someone who might present a danger made me wonder if she had a personal vendetta against this dear friend of mine who was before the court on two separate occasions several months apart. My friend had come under the courts control because of something she did while suffering from psychosis. She is a wonderful human being who has responded very well to extensive psychiatric treatment. She truly no longer poses a threat to anyone. But the DA fought to the bitter end to deny her so much as permission to travel out of state to the bedside of a dying close relative.

To be clear, I have no idea whether or not this is personal for the DA. She may truly feel it her duty to execute her job in such a fashion. Some might argue that she is right. But my suspicions that this was more than conscientiousness in fulfilling her obligation to the public got me to wondering what might be her problem and that of many who don’t “get” mental illness.

Here is my fifty cent theory: The idea of possibly contacting a serious mental illness terrifies people. Having a badly malfunctioning brain is, after all, among the very worst things that can happen to a person that doesn’t kill one quickly and painfully. Seeing a so afflicted fellow human being brings awareness of personal vulnerability. If this is another physical or biochemical illness it could happen to me.

To ease their fears many people try to see people with serious mental illnesses as fundamentally different than themselves. So they attribute their affliction to weakness, a lack of character or morality: some characteristic mark or sign of defect. Because they have no mark or sign of defect and  strong character and morality; they are immune. This awful thing will never happen to them. The person to whom it has happened deserves it and is to be looked down upon.

I’m sure there are many and varied reasons why the mentally ill are so widely stigmatized, but I wonder if this isn’t one of them.

 

By Joseph Merlin Bowers

I was raised by my mother’s parents, Merlin and Lottie Goetschius. Merlin was a direct paternal descendent of John Mauritius Goetschius. John M Goetschius was the commanding officer of the Bergen County Militia during the American Revolution. This militia probably saw more actual combat between fighting Howe’s regulars marauding from their New York City headquarters directly across the Hudson and the numerous very active Tories of Bergen County. John’s house and barn were burned to the ground by Tories during the hostilities. A history book says that these men worked their farms by day and watched for Tory raiders by night. None of them slept a night in their own bed for more than five years.

John Mauritius’s father John Henry Goetschius was probably responsible for instilling rebellious sentiments in his son. John Henry was the leader of the faction of the Dutch Reform Church advocating American autonomy from European control. The same history book quoted above says that John Henry who died in 1774 was probably more responsible for our independence than any of the many rebel officers who passed by his grave during the course of the war.

These men worked long and hard and sacrificed much to help bring about our independence. Tomorrow, July 4th, I will fly our flag and celebrate their achievement. My celebratory spirit will be somewhat muted, however, by current reality. The day for me is always bitter sweet.

My ancestors rebelled against the most powerful, oppressive colonial empire that the world had yet seen and they prevailed. Today the resulting nation has become the very thing they sought independence from-the most powerful, oppressive colonial empire the world has yet seen. For those who would object to my use of the word “oppressive” I point out that many British citizens in the Empire days would not have believed that the word applied to their empire either. Yesterday and today, however, those peoples being dominated by more powerful colonists might beg to differ.

Colonialism is inherently evil. There are many rationalities used by colonists to justify their domination of foreign peoples. Some of these are even sound, but fundamentally no nation has an inherent right to impose it’s will upon another people who pose no clear threat. Becoming the colonist instead of the colony does not make colonialism desirable.

I have grave doubts that my ancestors fought the biggest bully on the block so that they could become the biggest bully on the block. So for me tomorrow will be bitter sweet.

I am not as interested in living in a rich country or a powerful country as I am in living in a great country. Donald Trump wants to “Make America great again.” I contend that this country has never been great. It has been a country with great aspirations as yet unrealized. An example is the last words of our pledge of allegiance, “with liberty and justice for all.” We aspire to that. We have not achieved it. Let us continue to aspire greatly and lets work toward the achievement of great things. Great does not mean rich. Great does not mean powerful.

 

Mental Health Awareness Month

 

By Joseph Merlin Bowers

May is Mental Health Awareness Month. I cringe every time I hear the term mental health when someone is referring to mental “illness.”

First of all, I don’t care if anyone is aware of mental health. I want everyone to be aware of mental illness. What does the term mental health mean anyway? We all have mental health of varying types and degrees. The estimated four percent of the population with serious mental illnesses such as schizophrenia or bipolar disorder are among the most shunned, discriminated against neglected demographics of people in our society.

Roughly half don’t even know they have a disease. Mental illnesses are the only diseases I know of that often make you think you are not sick. Psychotic people, sick people who lack awareness, people with treatment resistant bipolar disorder and people with serious depression are among those who need a mental illness awareness month.

I also object to the idea of less menacing or shameful terms like health instead of illness, consumer instead of someone who is mentally ill and NAMI’s insistence that no one use the term “crazy.” I’ve been crazy many times in my life. If I object to the use of this term by others to describe these times, I am acknowledging that there is something shameful about being crazy. I wasn’t ashamed when  I got prostate cancer. Why should I be ashamed when I got psychotic?

I’ve done things when psychotic that I deeply regret but nothing that I’m ashamed of. I know these things were done because of an illness not because of any lack of character or morality or criminality.

My other objection to mental “health” awareness week is what I see as an attempt to highlight the high functioning in recovery at the expense of those who are really ill, really in trouble and really need help. People with untreated or treatment resistant mental illnesses are more dangerous to themselves or others and more helpless than most. They don’t need to be shunned or ignored. They need to be helped before tragedy occurs.

Serious mental illnesses kill just as surely as if they were cancer, heart disease, diabetes, ALS, HIV or any other type of disease. There are massive, popular campaigns to fight these diseases. We don’t even call mental illness what it is. Where is our ice bucket challenge to fight serious mental illness?  It affects a lot more people than ALS does.

Like most demographics that are discriminated against, crazy people are discriminated against because of fear and ignorance. Let’s have a mental “illness” awareness month to spread awareness and illumination and dispel fear and ignorance.