“Tell Me it Can’t Happen to Me”

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.

 

Independence Day is Bitter-Sweet for This Descendent of Original American Rebels

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 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.

 

Hope Requires a Reason to Believe

by Joseph Merlin Bowers

Had she lived, Natalie Ann Fuller would have turned 30 years old today. She suffered from bipolar disorder with psychotic features. A little over a year ago, Natalie put an end to the pain. She stepped in front of a fast moving train outside of Baltimore.

Soon after her diagnosis, they put Natalie on clozapine. It cleared up the psychosis, but Natalie’s bad luck held. She turned out to be part of the one percent who lose their white blood cells on clozapine. It would have killed her. Several other meds were tried. One was effective but caused obesity. I remember Natalie’s mother Doris emailing me that she thought her daughter deserved another option besides psychosis or obesity. Eventually Haldol was tried. Doris said that she did well when she stayed on it. Right or wrong, Natalie came to believe that nothing would stop the recurring episodes. Her history was having an episode, being fine for a while and then having another episode. She lost hope.

Episodal psychosis can be particularly devastating to hope. I can testify to that because I experienced it for more than twenty years. Out of necessity, I became adept at conning myself into believing each episode had been my last. It wasn’t going to happen again because of this reason or that reason. After six, eight or ten episodes, it becomes very hard to buy the con.

I think I lost hope after my last bad episode. I just couldn’t think of a reason for optimism. I carried on because my wife and two small sons depended upon me. But it was hard.

Ralph Trent worked as a consultant for a chemical supply company that sold a lot of chemicals to the lab in the power plant in which I had been working the past five years. He had been at the plant a lot in that time. We had played golf together. We had gone fishing together. He had visited me in the hospital when I signed myself in with an episode. Shortly after returning to work I walked into the lab office where Ralph was talking with my boss. I was heavily medicated and doing what we refer to as the “thorazine shuffle.” Seeing me shuffle in a shocked Ralph loudly exclaimed, “why are you walking like that!” It was so hard to hold back the tears.

I wanted to cry a lot in the months that followed. I suffered from hopeless depression for a very long time. But I carried on. Miraculously, I haven’t had another bad episode since. There was a minor one when I quit smoking. Another when a psychiatrist decided to try me on a second generation antipsychotic. But its been mostly clear sailing for 29 years now.

There was a new medication. I had learned a lot about triggers, precursors and healthy lifestyles. I got a lot of support from my wife and my various social workers.

As the years passed without an episode the depression slowly dissipated.  I started hesitantly to believe. Hope returned.

In every NAMI meeting whether of family members of the mentally ill or of consumers we recite a number of things. One is “I will never give up hope.” It’s all well and good to say this, but the reality is that for an honest, intelligent person to hope one must have a reason to believe.

In my life during the good periods between episodes I was often able to mostly pick up the pieces of my shattered dreams, hopes and plans and start over. During my current lengthy good run, I’ve been able to make some real progress. I have been blessed to be able to live a pretty productive, rewarding life despite having a serious mental illness.

I believe there are many of us out there who have managed serious mental illness pretty well. I believe it is very important that we speak out and tell our stories. I know there are consequences to coming out of the closet. One could lose a job. Not everyone is over 65 and retired like me. Relationships can be destroyed. Not everyone has a circle of friends who know all about the illness but remain loyal friends. But I see it as a matter of life and death.

When someone relatively new to battling mental illness learns of someone fortunate like me who has survived to know peace, happiness and even some joy, it may give them a reason to believe. It may allow them to hope. This may save lives.

When the Natalie Fullers of this world lose hope we all lose.

 

 

He Did OK All Things Considered

by Joseph Merlin Bowers

For more than twenty years, I suffered from episodal psychosis. I would experience a psychotic episode, get better and be fine for a while. Then would come another episode. The correct diagnosis was probably Bipolar I with psychotic features. Because of the psychotic features, I have spent more than two months in a state mental hospital twice, time is two different jails in different parts of the country and been in two different hospital psych wards.

Despite all this, I have earned a B.S. degree, been married to the same woman more than forty years, supported and raised a family of three children and held down  fairly demanding good jobs-one long enough to earn retirement. Today I am retired with enough money coming in and live where I want to. I play golf, fish, ride bicycles and volunteer at a drop in center for people with mental illnesses. I am very happy with where I am living and with what I am doing.

A speaker I listened to once claimed that he was successful because he was living where he wanted to and doing what he wanted to do. So, I think, it could be said that I am successful. Clearly, my wife deserves a lot of credit for how well things have turned out for me; but I give myself some credit as well.

I can envision my epitaph saying something like, “He did OK all things considered.” loathing my disease as I do, for most of my life I have despised the “all things considered” part. I wanted total victory over my disease and my epitaph to read simply that “He did well.”

It can accurately be said that I am in recovery from a serious mental illness as I have been mostly symptom free more than 29 years now, but it would be false to say that I am “recovered.” No one ever fully recovers from a serious mental illness. I will never out live the reality that if I don’t take proper care of myself, I might suffer a relapse. In fact it could happen anyway so far as I know.

Lately I have come to accept that making concessions to my mental illness like taking an antipsychotic and regularly seeing a counselor is no different than a cancer patient doing radiation treatment or chemotherapy and regularly seeing a physician or someone with heart disease or diabetes taking medication and watching their diets. All of us with serious diseases have to make adjustments. Why should I demand of myself that my situation be any different? Why should I feel that short of total recovery requiring no adaptations or concessions, I have failed? I have not. I’m trying to accept that now.

 

 

 

I Was a Potential Jerad Loughner

by Joseph Merlin Bowers

People who have known me a long time and/or have read my book know that I have come close to committing violent acts while in the throes of psychosis. At seventeen I carried a loaded shotgun up to my Grandmother’s bedroom intending to kill her. More than twenty years later I seriously debated killing my wife. I did not actually psychically harm my grandmother or my wife as it turned out.

So I have often been asked a question that I long wondered about myself: Is there a fundamental difference between someone like me and a Jerad Loughner, James Holmes, John Hinckley or Mark David Chapman? Events of the past year and a half have provided me with a clear, unequivocal answer: no. While I have never met any of the above named individuals, I have gotten to know well people who have taken innocent lives while psychotic.

Roughly a year and a half ago, my wife and I were able to sell our house in Wyoming and move to another town in another state. This town turns out to be the location of the main mental hospital of our new state. It also has a drop-in and resource center for people with mental illnesses where I have been volunteering. There I have become good friends with two people who have killed while psychotic.

At their trials they were found not guilty by reason of insanity. They have been in the hospital undergoing treatment for some years. Because they have responded well to treatment and are doing very well, they are allowed some limited time out of the hospital into the community. They both spend much of that time working at the drop-in center trying to help others with mental illnesses. They both have extensive training and are very good. They have entrusted me with their stories and we have become dear friends.

These individuals are very intelligent, highly motivated, competent, compassionate and caring. When they eventually get more freedom to rejoin society they will make a positive contribution to our community and our society. Of that I have no doubt. I would be proud to think of myself as as good a person as either of these and am very proud to call them friends. Why did I not act while they did? Circumstance and good fortune for me.

When I reached my grandmother’s bedroom with my loaded shotgun, she was kneeling by her bedside in prayer. Just the same, I went in believing her possessed by Satan. I intended to kill her and thereby decisively decide the age old battle of good versus evil. But enough doubt had been planted in my delusional, psychotic brain that when I stood there pointing the gun at her with the hammer back and my finger on the trigger, I just wasn’t sure enough to squeeze.

Twenty some years later I sat in my mobile home bedroom trying to decide whether or not to kill my wife. Now I had more than twenty years experience with episodal psychosis and was developing some awareness. So I decided to go tell my wife that I needed to sign myself into a psych ward in a hospital.

There is no doubt in my mind that had I not found my grandmother kneeling in prayer and had my disease had me contemplating killing my wife in a much earlier episode, things could have gone much differently.

The lesson in all of this is very clear to me: When you hear of a violent act carried out by someone experiencing psychosis, don’t vilify or condemn the person. Vilify and condemn the disease. It was the disease that killed just as surely as if it had been cancer or a heart attack.

 

 

 

“Some Say Don’t Hate Nothing At All Except Hatred” Bob Dylan

by Joseph Merlin Bowers

Bob Dylan was a powerful influence on many in my generation including me. Generally speaking, I consider the above another or his wise, astute lines. But I take at least one exception to it. I hate serious mental illnesses. Words don’t exist to adequately describe the depth to which I loath and despise them. I hate what they do to people, what they put people through and what they make people do.

That being the case, I decided long ago that I would fight these diseases any time I can, any way I can and any where I can. I will still be doing this the day I die. To that end I published a book about my life hoping to give people with diseases like mine a reason to believe-to hang on to hope. I know how hard that can be when psychotic episodes keep coming back. My book is not exactly a best seller. I got involved with an influential national advocacy organization. They have run a number of my essays or blogs over the years. But it wasn’t until recently that I found a place where I think I can make a real difference.

I have moved to a new town where the State’s main mental hospital is located. Here I volunteer a lot at a drop in center for people with mental illnesses. There are professionals on the board and active at the center, but it has been and remains mostly peer run, by peers, for peers.

The peers most active here are from the hospital. They are either still living there or recently released on conditional release. They are doing very well in treatment and for this reason have a lot of privileges. They also have been incarcerated a period of years. This is because they fall in a high risk category because of the severity of the tragedies that got them there.

I am very honored that in several cases they have entrusted me with their stories. The stories are very sad, tragic and heartbreaking, and I so totally understand the hows and whys.   “There but for the grace of God…”. Having been just as psychotic as any of them I could easily have been any of them. I have just been randomly luckier. Some of my episodes got me in trouble but nothing as serious as with these guys.

One girl in particular is an inspiration to me. She has been through metaphorical hell yet she is as loving, compassionate, warm, outgoing and caring about others as anyone I have ever met. If tragedy has changed her at all, it has made her a better person. Her mental health may be a little fragile. There are things she has to watch and to do to stay healthy, but deep inside there is iron. She is very strong

A mentor of mine passed away in November at the age of 98. Knowing him as I did I suspect that he did a set of calisthenics that day before dying. Among many other things, he was my high school football coach. He seemed to take a special interest in me, but I suspect he made all his players feel that way.

As a football coach he spoke often of what he called “intestinal fortitude,” a fancy way of saying guts. Coach Lamb taught me and others that in the battles that matter in life it always comes down to guts. Either you have intestinal fortitude or you don’t. They may be inborn or they may be forged in the metaphorical fires of hell. For some they become necessary for survival.

I have known people with serious mental illnesses who lost their ability to believe there was any reason for hope. One stepped in front of a bus, another in front of a train.

It has taken guts for this girl and others to survive.

One of my recurring delusional fantasies when I’ve been psychotic has been being tasked with leading an assault on the gates of hell. Like most delusional fantasies there was just the slightest grain of a reason for a delusional individual to think this might happen. There have been some notable warriors in my family tree. Anyway, I have been in a lot of places, some very undesirable, and I have met many people. In my travels I have met a handful of people strong enough so that I would want them by my side in such an assault. This girl is one.

The inspiration this girl has given me begs for me a couple of questions: Is it necessary to suffer greatly to become someone who cares deeply about others? I can’t answer that. If suffering has made this girl a better person, has it had a similar effect on me? I can’t answer that either.

Being that most of us want to be the best person we can be, this thought gives me something to hang onto. Maybe my suffering has brought out the best in me?

The last question begged by all of this is: Was it worth it? I can’t answer that either.

All that aside, I am finally doing something that I really want to do and believe in. At this drop in center we sometimes talk someone into making an appointment to see a doctor, or to get back on medication. Sometimes we help someone connect with a necessary service that exists in town. Sometimes we just provide a place where someone feels comfortable talking about something he needs to talk about but is very hard to talk about.

All of these things are victories in my war. They are not little things.