Treating the Whole Person

Joseph Merlin Bowers

About two years ago the managing director of the community center for people in recovery from mental illnesses where I volunteer asked me to drive two hours to Denver one mourning to attend a large mental health stake holders meeting. He felt there should be at least one consumer at this meeting. It had to do with a new emphasis being insisted on and implemented by federal medicaid people to treat the whole person rather than have people with mental illnesses in one box, people with psychical ailments in another and substance abusers in still another. After all people often have multiple issues. A person with a serious mental illness may develop diabetes due to lifestyle and or medication and self medicate with one substance or another. Often it is hard to determine which came first. This new emphasis sounds on the surface altogether logical, fitting and proper.

I, however, have been a consumer of mental health services since 1964. I’ve seen this kind of thing played out over and over since then. It always results in more funding, resources and attention being diverted away from those of us with serious mental illnesses in favor of psychical aliments, addictions and people in less dire need . By serious mental illnesses I mean schizophrenia, bipolar 1, major depression and any other truly debilitating mental affliction. With limited resources there is always competing needs and demand for them sad as that may seem.

I may have been the only non-professional consumer in this large room of a couple hundred people. In the mental health industry the term stake holder refers to people who attempt to treat the mentally ill and not the mentally ill themselves.

The federal people conducting this meeting of a hundred or do informed us that the purpose was for those implementing the new emphasis to gather input and ideas from stake holders. I had opportunity to put in writing my concerns and ideas. Talking with others during breaks, the events generally seemed to be seen more as public relations efforts than honest attempts at gathering information upon which to base policy and stricture. Most of us got the impression that the feds came in knowing how they thought this should be done and that was ultimately how it would be done.

When I moved to Pueblo in November of 2014, the largest provider of mental health services was a private organization called Spanish Peaks Behavioral Health. As a result of this new emphasis, they were changing their name to Health Solutions, hiring medical doctors and creating more facilities than just those for mental illnesses. We in the mental health community were assured that these new services would be self supporting and no funding or attention would be diverted from people with mental illnesses.

About a month ago, I was informed that I was being discharged as a patient by Health Solutions. A high up corporate decision had been made to stop seeing and treating people who have third party insurance. I am retired and insured by Medicare and I have supplemental insurance through the company I retired from. I was told they would still see me if I dropped my supplemental and replaced it with Medicaid. I wouldn’t qualify for Medicaid and I told them that I could guarantee them that they would get paid even if it wound up coming out of pocket. That didn’t matter. A new corporate policy was in place. The Health Solution personnel on the ground were very upset as they were loosing a lot of patients they were invested in, but policy was policy.

I have served on a board with a couple people high up locally and got their attention. There has been or will be a meeting of them and out of town corporate mucky mucks seeking clarification and explanation. My case will be or has been discussed. The last I heard the meeting was to take place yesterday, but I have not heard what transpired. I’m not optimistic.

In a related event Health Solutions announced that they are divesting of some mental health facilities and releasing 33 mental health personnel. I just hate it when one of my negative propheseys comes true.

What Has Behavioral Health Got to do With Serious Mental Illness?

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.

Combating Misnamed Stigma in All the Wrong Ways

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 families 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”.

One Consumer’s Biggest Complaint With Mental Health Professionals

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.

 

 

 

Reflections on the Passage ot the Cures Act

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.

My Reasons for Advocacy Have Changed

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.