Hope Requires a Reason to Believe

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.

Episodic 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.

 

 

 

 

 

Lumping Together Substance Abuse and Mental Illness

by Joseph Merlin Bowers

In 1992 Congress passed legislation creating the Substance Abuse and Mental Health Services Administration SAMHSA. They made one group responsible for dealing with both substance abuse and serious mental illness at the federal level. As anyone could have predicted, this has been nothing but bad news for families dealing with serious mental illnesses.

In the ensuing years more and more state mental hospitals have been closed, more regular hospitals have eliminated psych wards, a serious shortage of psychiatrists has developed and everywhere one looks funds used to treat serious mental illnesses are being cut. At the same time more attention, professional services and funding for those abusing substances is becoming available. There is currently a congressman calling for earmarking 6oo million new dollars to address a growing heroin epidemic. Over the years, big money has been spent researching drug abuse-very little researching serious mental illness.

I understand some of the reasons for greater concern about substance abuse. Wikipedia estimates set the number of substance abusers at 120 million in this country. Serious mental illness is generally accepted to occur in roughly four percent of the population. That translates to a little more than 12 million Americans. So substance abuse effects ten times as many people.

Also drug abusers are much more likely to become violent criminals than people with serious mental illnesses so there is that consideration.

I first became aware that something dangerous was in the wind when I noticed that the clinic where I had gone for treatment for my serious mental illness for years had changed it’s name. What had been the South Lincoln Mental Health Clinic was now High Country Behavioral Health. They no longer employ anyone with qualifications that will result in Medicare or Medicaid paying for someone with a serious mental illness being treated there.

When I first noticed the name change my thought was that if people think that behavioral health has any strong connection to serious mental illness, families like mine are in big trouble. While the term behavioral health is appropriate when discussing substance abuse, when used with regard to mental illness it is insulting, ignorant and dangerous.

At least initially abusing a controlled substance is a choice. It is a chosen behavior. No one has ever chosen to become mentally ill. Almost all of us are totally innocent victims. Our disease almost never had anything to do with chosen behavior on our parts, our parents parts or anybody else’s part. Curing them isn’t simply a matter of changing behavior choices.

Do we not deserve a lot of attention and help?

Substance abuse is a serious problem that must be addressed, but not at the expense of innocent families suffering from serious mental illnesses. Serious mental illness needs it’s own federal agency. And please, please stop referring to mental health as behavioral health!

Assisted Outpatient Treatment

by Joseph Merlin Bowers

One of the more controversial parts of much legislation being considered in Congress currently is assisted outpatient treatment. It’s even been a source of a disagreement between one of my sons and I. Some of the trouble is that it doesn’t mean exactly and only what is says. It also means involuntary outpatient treatment and sometimes forced medication.

As anyone who knows me might expect, I have a lot to say about this issue as someone who has experienced psychosis, involuntary commitment and at least coerced medication.

In the West we greatly treasure civil liberties and freedom of choice as I think we should. So taking that away from an adult should never be done lightly or routinely. All of us in fact no matter our competency sometimes make bad choices and we should have the right and freedom to do so in a free society. Taking this freedom away should be very rare indeed. But civil liberties and freedom of choice are not just privileges. They are also a responsibility if sometimes only to ourselves.

Because of this responsibility, we don’t allow small children to make important life altering decisions or so burden them if that is how one looks at it. Nor should we allow or so burden someone who is mentally incompetent.

Who is and how do we decide who is mentally incompetent? Clearly this should be done on as limited a basis as is humane. I would say only those currently psychotic should be so deprived of freedom of choice. This should be determined, I think, by a licensed psychiatrist.

We are getting into gray areas here.

Should someone competent but extremely depressed be allowed to choose suicide? I think not. But I think most of the time involuntary commitment and forced medication shouldn’t be necessary to stop them.

I’ve been in a situation where the only way to gain my release from an institution was to convince a psychiatrist that I was fully competent. It is an extremely unpleasant feeling of complete helplessness that few need ever experience. However, having been psychotic and convinced at the same time that I was fine, I must say the following: If I ever get in that state again, please force me into treatment. It might save my life and I will thank you later.

The issue of forced medication and antipsychotics in general is nuanced and complicated. I may set forth my views on that in another blog one day. I’ll just say for now that I favor it when appropriate.

There is another legitimate question about forced commitment. When I am psychotic and someone else needs to be  given the power to make decisions for me how  do I know that when I become competent again he will give that power back to me? This to me is a real concern. Not a deal breaker but a real concern.

I am not a big believer in faith as the be all and end all of existence. I think blind faith is a very dangerous thing. But little can be done in life without exercising some faith in something or someone. Here I think we have to exercise some faith in competent professionals. It should not be without checks. There should be a reasonable time period for regular reevaluations by at least three psychiatrists, I think.

I don’t know exactly how the proposed legislation is written, but it’s entirely doable to address all legitimate concerns anyone may have. Even if the legislation is imperfect, I would strongly support it.

The alternative is the status quo which leaves incompetent people to their own devices. This has resulted in tens of thousands of needlessly wasted lives on the streets and in our jails and prisons.

No one competent chooses a life sleeping out of doors with cardboard blankets eating out of garbage cans. I’ve been arrested because of what I did while and because I was psychotic. I’ve been strip searched and body cavity searched in full view of a female guard. I’ve been put in jail house restraints lying on my belly on the floor with my wrists and ankles bound together behind my back. I’ve spent days in solitary confinement in a four by eight foot cell with only a peep hole to see out of while in a manic state and out of cigarettes. No one in his right mind would choose this over treatment. Take it from me.

 

 

The Pursuit of Happiness

by Joseph Merlin Bowers

I am currently trying to position myself in this community to where I can most effectively advocate for people with severe mental illnesses. On the surface this sounds all altruistic and noble, but it could legitimately be argued that I am doing this for selfish reasons. First of all is my bitterness for having been cursed with insanity. As it stands now if there is a God and I meet Him one day, He’s got a lot of splaining to do. If it turns out that I help people because of what I went through, that makes things better and easier to live with. I’d be OK with everything. Also I am pursuing happiness.

Many people think the successful pursuit of happiness means winning, proving personal superiority and/or amassing huge collections of things and of riches. When they do these things and discover that they are not happy, often they assume that they haven’t won enough, sufficiently proven superiority or amassed a large enough fortune. They double down and wonder how much is enough. How much does it take to win happiness?

In my opinion these people are pursuing happiness from the wrong direction with faulty assumptions.

Some time ago one of my sons gave me his theory on happiness. He said that happiness comes from expressing one’s creativity and from service. I like this not just because it seems pure and nice, but because I think it’s true. It assumes that self respect is necessary for happiness.

Self expression can sometimes go awry and cause consternation, but there is joy and value in the creative process. When I wrote my book about my experiences with my serious mental illness, I wasn’t able to get many people to read it. This was massively disappointing, but through this act of creation I became a better, healthier more together (happier) person.

When I tie flies and get a couple good ones out of many attempts there is a feeling of accomplishment and happiness. This is augmented when I catch fish on flies I have tied myself.

It’s hard to argue with service as a source of self respect and happiness. Who doesn’t feel good when he thinks he has done something good and helped somebody.

So if you want to be happy for the rest of your life  don’t necessarily get an ugly woman to be your wife. Devote your life to creativity and service.

Doing the Right Thing for the Wrong Reasons

by Joseph Merlin Bowers

I was first hospitalized with a serious mental illness in 1964. Since then I have watched our mental health care system steadily decline. Because of this, I try to be a strong advocate for mental health reform. To this end, I frequent the web pages and Facebook pages of several advocacy organizations. They are making real progress of late, but some of their methods concern me.

They add to the sensationalism of tragedies involving mass shootings by someone with a mental illness. They tell us that we should improve our treatment of the severely mentally ill because that will make us and our society safer. They also promote reform because it would be cost effective.

Treating people sooner and better would make us and the people being treated safer. When one compares hospital and outpatient costs to costs the costs of imprisonment, emergency room visits and the potentially productive lives wasted on the streets it would be very cost effective. These facts are completely irrelevant. They are not why we should be supporting mental health reform.

We should be supporting mental health reform because it’s the right thing to do, because these people are terribly sick and desperately need our help, because if they had cancer, HIV, ALS or any other kind of disease than the one they have; we would be falling all over each other with compassion, sympathy and offers to help in any way possible.

When we push reform using fear, we add to public fear and stigma. Economic considerations should carry little weight next to humanitarian considerations.

Some say any publicity is good publicity, anything that produces good results is good. The ends justify the means.

Hogwash!

I say that we have no certain control over any desired ends. We only control our means. I worry that if we don’t act for the right reasons our ends will be tainted and distorted from what is desirable. I think our reasons matter. Maybe my worries are unjustified. I don’t think so.

Are Madness and Creative Genius Inseperable?

by Joseph Merlin Bowers

This morning I red a review in the Denver Post of a play entitled “Equus.” It is a famous fictional story of a young man with an insane obsession with a horse and a psychoanalyst conflicted about his profession. The doctor wonders if by easing the emotional pain of his suffering patient he is extinguishing the flame of creativity and genius. The thought that insanity and creativity somehow go hand in hand is one I keep encountering and that kind of pisses me off.

My perspective is from someone who has experienced, “madness,”  the emotional and fantasy journeys of severe psychosis. I will concede that many creative geniuses have also suffered from serious mental illnesses. I will also concede that insanity often demolishes any barriers to where one might go in his consciousness and what he might imagine and mentally experience (in that regard “madness” can be exciting, intoxicating and addictive), but I emphatically reject the premise of any correlation between madness and genius.

I believe that the appropriate metaphor is that of a highly complex machine that performs complex tasks having more things that could go wrong and requiring more maintenance than a simple machine that performs simple tasks. When the complex machine breaks down it is busted and cannot perform it’s functions. I am in complete agreement when a VanGogh  speculates on what wonders he might have created were it not for the madness.

When I was lost in the fantasy worlds of my insanity, I couldn’t focus on any task long enough to perform it-even something as simple as eating. After a psychotic episode, the cognitive impairment was noticeable even to me. After my first hospitalization returning to the “real world” to finish my junior year of high school, I was determined to graduate with my class. Because of this, my study habits and work ethic were much improved from before, but learning came much harder that it had previously. I had the same experience a couple of times in college.

The cognitive decline did seem to wear off. Over time, I think, my cognitive abilities returned to normal. A psychiatrist once, I think aptly, likened a psychotic episode to me to a bad concussion in the effect it has on one’s brain.

I’ve been told that I have accomplished a lot and had a good life “all things considered.” I will never be able to stop wondering what I might have accomplished were it not for the madness.

Is God Bipolar?

by Joseph Merlin Bowers

This morning while attempting to meditate, I had a very strange thought-God might be bipolar. I want to say that I prefer the term manic-depressive as a more accurate and meaningful term for the illness but will use bipolar here as it is in much more common usage today. I was remembering a recent fishing trip through the country along I-70 West of Denver.

I’ve seen most of the United States at one time or another in my travels and I’ve been in the Rockies much of my life, but I’ve never seen anything as spectacular as that country. My thought was that it was almost too much-overdone. One can visualize God being in creative ecstasy while making such places-creative ecstasy being characteristic of mania.

If one takes many of the Old Testament stories literally, some are indicative of unreasonable, unreasoned fury which often accompanies severe bipolar depression. My theory would certainly explain a lot of things that have bothered me since my earliest exposure to scripture as I try to believe in a powerful, compassionate God. .

If one attributes much of what goes on today as the will of God, as a friend, I would tell Him that He has a problem that needs to be addressed.  I would be so brave as to advise God to find a good med and to talk to someone wise and understanding.