Archive for March, 2011

Second look: On voice

March 31, 2011

Each of us has a voice and much of life is about finding that voice. It is our unique personal significance and it is something that in this “diagnosing world” is sadly unappreciated. To find your voice means to know that you matter in ways unique to you. It is a combination of talent, passion, calling and conscience. It is loving what you are good at and knowing that it is important and right. It is not something you have to be good enough to earn. It is not a result of where you fit or dont fit. It is not what you get out of life, but a way of living.

It is something found and appreciated. It is never done, but is doing. It is for most of us the struggle of a lifetime, but it is also the reason for life. All of us seek completion. But words are misleading. It is not something we have or get but a doing. It is not so much the completion as the completing.

If you have been diagnosed with a mental illness, someone, maybe even with a good heart, has told you that voice (or whatever word they call it) is something you will likely never experience or find. They will tell you that your experience will not be that of “normal people.” They will tell you that life is defined by your limits, not by the opportunities you encounter. All of that is nonsense. It is silliness cloaked in the clothes of fact. You are uniquely, personally significant.

Like anybody you will find that hard to find if the stress of everyday living is so out of control that every minute is a struggle. You will find it hard to find if your relationships with other people are empty or an ongoing war. You will find people who will tell you that is all recovery is about. Cope with life, with events, with others, and with yourself….period. But that is not all that it is about. The point of successfully coping with the life you have is to find more life.

You count. Rather you know it or not… Rather you believe it or not… Rather you understand how or not… It is true. You count.

Can Our Medical Model of Care Be Remade? — By Robert Whitaker « Beyond Meds

March 31, 2011

Can Our Medical Model of Care Be Remade? — By Robert Whitaker « Beyond Meds.

Medication management

March 31, 2011

Thanks to Lisa Ragan for sharing this link

YouTube – patdeegan’s Channel.

Freedom

March 30, 2011

Being a good psychiatric patient. Avoid trouble at all costs

March 30, 2011

The post below, “A culture of disregard” was the first post written for this blog several years ago before we started using wordpress.com. Looking back at it now it is a good description of what it takes to be a good psychiatric patient:  avoid trouble at all costs.  What I know now that I intuitively knew then was that psychiatric care for too many people is a battering and bruising experience.  The overall message, given in subtle ways, is that you are “less than”  others.  Providers seldom see this.  For them it is about compliance and you accepting the reality of your “less than” status and doing what has been determined is “good for you.”

As you read this post notice how in so many little things so much damage is done.

“A culture of disregard”

My wife was recently a patient on a psychiatric ward.  The first night she went to get her seizure medication.  One of the medicines—lyrica—was not there.  When she asked for it she was told, “No, you can’t have it.  It’s not an anticonvulsant.  It is a pain medication.”  When Linda protested and told them she had been taking it for 8 months and it had been prescribed by her neurologist she was told, “It doesn’t matter what outside doctors say, only inside doctors.”  The incident while extreme, illustrates a truth common to the experience of many psychiatric patients.   The message is given to them everyday in many ways:  “ What you think, what you know, what you want is  not nearly as important as what we think, what we know, and what we want you to do.”  There exists in many psychiatric wards a culture of disregard, a system of beliefs and practices, sometimes unspoken, but always there, which legitimizes the power of one person over another,  and excuses much of what he does as being for the “good” of the other.

The discussion below is borne primarily of my wife’s experience on one ward.  I am not saying that the criticisms I make are necessarily true of all psychiatric wards.  It is not the way they must be.  I am saying that what was true of Linda’s ward is true to some degree of too many other wards.  I have worked for 35 years in the mental health field, both in and out of psychiatric hospitals.  I have known and worked with many caring and dedicated people.  In describing my wife’s experience though I have had to re-look at much of my own.  Much of what I have seen is more than a little uncomfortable.  Too many people leave psychiatric programs diminished by the experience.  They walk away convinced that life will probably never get better and if anything is only likely to get worse.

When treatment programs work they help patients to find hope.  Without some sense of hope not much else really does work.  Treatment is supposed to tell people who believe life is too hard and that nothing is likely to make much of a difference that they are wrong.  For many patients hard times have been a constant companion and seem, regardless of what they do or how hard they try, a certain destiny.  Patients should leave the program feeling like they have “more” than they came in with.  Treatment should open opportunity, not deepen deprivation.

Hope was one of the first casualties on Linda’s ward.  All relationships on the ward were based on power.  The staff had it.  The patients didn’t.  Linda  described to me the ritual of going to the nurse’s station to get meds or personal needs met.  Patients would go to the nurses station and wait to be noticed.  This usually took several minutes since the staff was often “busy” talking to each other.  During the 7 days that she was there Linda told me that she did not remember a single time when a staff member saw a patient coming, anticipated the need and talked to them without first making them wait.

This gives a clear message.  If your needs must wait on my convenience then you really don’t matter much.  Patients learned quickly that your value was defined by the staff.  Follow the rules, be where you are supposed to be, do what you are supposed to do, and above all else, don’t cause any trouble.  That is what it meant to be a good patient.  Fitting in was the key to success.

Even the “craziest” people learned not to make waves.  Linda was trying to tell one lady that she thought God would be there for her.  The lady was obviously psychotic and having a hard time.  A staff member overheard the conversation.  “Shut up.  That is an inappropriate conversation.”  The most amazing thing was that this “crazy” lady turned to Linda immediately,  “We need to quit.  It’s not worth the trouble.”

Patients learned quickly to be careful about expressing their thoughts, their feelings, and their needs.  There was not one single staff that any of the patients felt comfortable in talking with about anything of importance.  Trust between staff and patients seemed almost an irrelevant ingredient to daily life on the ward.

As much as anything else hope died in the overwhelming boredom that was the most certain feature of the day’s schedule.  Every patient had to deal with a regimen of enforced passivity.  Their choices were simple.  Sit in the group room and watch TV or go to your room and sleep.  Individual counseling was an illusion.  Groups were few and no threat to anyone’s favorite TV show.  There was basically nothing to do and nothing to look forward to.  Meals were the high point of the day.

Boredom seems endemic to many treatment programs.  We justify it by referring to the need for structure and tell ourselves how much patients really need it.  At it’s most pervasive it is a soul-killing and mind-numbing monster.  When people drown in boredom they no longer strive for a better future, but pray to survive an awful present.  Depressed people, as many psychiatric patients are, usually find no reason internally to be hopeful.  When the external environment confirms their internal gloom the result is a grim existence.

There was nothing to do on the ward to have fun.  No games. No activities or events.  No resources.  No nothing.  It is a curious logic that takes internally impoverished people and places them in an impoverished environment and then tells them the only answer to their unhappiness is medication.  You stop wanting  for things to be better when the message of daily life is that it is pointless to want anything.  Boredom cannibalizes hope and leaves the future stillborn.

It is really hard to develop hope in life if the important people in life are not hopeful about you.  On the ward it was a blessing seldom given.  It is hard to bless people you don’t  talk to and impossible to bless people you don’t notice.  Discouraged people are discouraging to be around.  Staff gets to the point where a day survived is a good day and the vicious cycle just keeps spinning.  Patients learn over and over again that they are defective.  Instead of being people dealing with extraordinary circumstances they become defective people who mess up all circumstances.  The purpose of treatment is to give people a new lease on life, not to destroy any hope of a better life.

Everything in life is either a source of opportunity or source of deprivation.  The ward had no promise, built no confidence, and bred no courage.  It told patients that life offers you nothing more than you already have,  and that they were alone with no real chance of a life worth living.  Many people live a lifetime of what Linda lived for 7 days.  For too many the psychiatric system offers only a way in and no way out.

From my wife I learned much of what I know about courage.  She has survived serious issues with epilepsy, a brain surgery which has left her tragically disabled in many ways, 4 abdominal surgeries, and bipolar disorder.

She maintains hope where I confess sometimes I see little.  With every reason to quit she has found every reason to live.  She has known despair and had to fight for the life she loves so much.   She has stumbled more than once.  She has always stood back up.  She remains an ordinary person coping with extraordinary circumstances through God’s grace.

My wife reminds me of something a friend once told me.  He had a wife with brain cancer who was supposed to die after 6 weeks who was still going strong after 6 years.  “Larry me and you are lucky.  People search their entire life for proof of God.  Me and you get to see his miracles every day.”

Long-Term Antipsychotic Use May Reduce Brain Volume | Bipolar Beat

March 30, 2011

Long-Term Antipsychotic Use May Reduce Brain Volume | Bipolar Beat.

Antipsychotics May Up Mortality in Late-Life Bipolar Disorder

March 30, 2011

Antipsychotics May Up Mortality in Late-Life Bipolar Disorder.

Trauma informed care. Getting past the medical model

March 29, 2011

The basic ideas of the medical model are really very simple.  The  most important thing about you is “what you got.”  “What you got” determines how you think, what you feel, and how you act.  Treatment means to learn to manage the symptoms  of “what you got”, trying to minimize the damage, making life tolerable and you tolerable to other people.  In very real ways,  you are considered broken and deficient, and your experience and life as “less than” that of other people.  Being realistic means accepting this and learning to live with it.  “Being compliant” with treatment is the best thing you can do.

The ideas of trauma informed care turn this all on its ear.  The most important thing is not “what you have” but what happens to you.  Bad things happen.  Bad things happen a lot.  Bad things happen to a lot of people.  Trauma is real and universal.  Much of what we do and who we are is our best solution to the problem of what has happened.  Many times on this site I have talked, not just about mental illness, but the trauma of mental illness.  Trauma in a very real sense “spoils” reality.  It fastens us with a sense of who we are, who others are, what we can expect, what is real and what is illusion that impoverishes our lives.  It is not just that bad things happen, but that so often they convince us that only bad things happen.

Trauma informed care is about making life better.  It says that caring counts.  What people do to us may leave us scarred, but what we do with others and what they do with us helps us to find new experiences and new possibilities.  People have the ability to learn new skills that improve the quality of their life and with practice make them a part of who they are, what they do and how they see.

People are more than what they called and when people are treated like they are nothing more than a diagnosis it is a traumatizing event.  To the extent they believe that it changes the way they see themselves and the possibilities of what life can mean for them.  Trauma informed care is about collaboration.  It is “with people”, not “to people.”  It tries to help us to see that behavior makes sense in some way to those who exhibit it and the biggest challenge is to help them find other ways that do not have the crippling consequences in their life that current choices do.

The medical model often fails to see the impact of trauma and it fails miserably to see how the experience of trauma effects virtually every person with mental health issues.  It ignores the context within which people live and tries instead to categorize the content of how they live.  In trying to “cure” it to often loses the ability to care and leaves those it deals with more battered and bruised.

I am not anywhere close to an expert on trauma informed care.  Thanks to a recent conversation with a new friend, Dr. Elizabeth Powers, I have begun to try to understand how many things I have tried to talk ,about, very clumsily sometimes, on this site are very close to the ideas expressed in the notion of trauma informed care.  I plan to continue to try to learn more and I hope that you have found enough here to interest you in learning more.

Bad things count, but they are not all that counts.  When we find ways to care about each other that honor us we open the doors for new possibilities both for those we care about and for us.

Mental health recovery. Brad Hoefs on a faith based approach

March 29, 2011

This is one of my favorite posts on this blog.  Thank you Brad.

 

He showed up in the middle of the afternoon, sat down on the couch, and began to read from the notes he had taken from sermons preached by his pastor.  He was reading words that had brought him hope out loud to the very man who had preached those words.  The pastor sat there expressionless and numb; hardly able to hear him.  I know.  I was that pastor.

For the first time in my life I was experiencing the sharp daggers of depression. The pain was screaming so loud I couldn’t hear what he was reading.  Not only did I have no hope, I wanted out of the pain and suicide seemed like the only way.  Days were long and nights were even longer.  Despair was a close friend.  I had fallen into a deep hole—bottomless—that seemed to have come straight from the pits of hell.

That day was fifteen years ago.  It’s been a long and at times a very slow journey since then.  I’m thankful to have experienced all the pain and difficulties because today my life has more meaning and hope than ever before.  Yet I never want to have to walk through that kind of pain again!

Fifteen years ago I was a pastor in a large growing dynamic church.  My whole life was wrapped in and around that role.  I was driven to do; to succeed; to conquer.  Truth be told, the church was my idol. My relationship with the Lord was one of necessity so I could worship my idol and find my worth in my accomplishments.  The church had grown from 800 to thousands in worship on Sunday mornings.  While those close to me knew I could be demanding and hurtful, and had a long line of broken relationships behind me, they were most likely too afraid to say a word about it.  By the time I crashed and burned I had most everyone around me convinced that they needed help, not me.

I had cried out to the Lord over and over to help me.  The faster the church grew the more my private life reeled out of control.  I felt like I had a monster inside of me that I couldn’t control anymore. On a Monday night in early May 1995 the Lord answered my prayer for help.  Because He loves me He allowed me to feel the consequences of my out-of-control actions and risk-taking behaviors during an extended manic episode which ended in a very public humiliating way.

Now the pastor who had preached forgiveness, mercy and grace, desperately needed it himself.  I needed hope.  Hope was awfully hard to find in those initial days.  However, there was a small group of people who understood that the accusations I faced were a result of being bipolar. The diagnosis that came some four months later was not an excuse for any of my crazy behaviors. Instead it was the explanation for them.  Today I am a joyful and healthy pastor of the church started by that small group of people.

There were those at the time who said my career was over and that I was no longer fit for ministry. However, going through that pain and hurt makes me a much better pastor today than ever before.  Today I am able to comfort others with the comfort that I experienced in those days so many years ago.  There are so many things that I have learned about recovery and faith.  Here are just a few of those things:

  1. Having a mental disorder is not a moral issue nor is it a faith issue.  It’s a physiological issue.
  2. Since we are both body and spirit (the brain is part of the body- its organic) the best way to minister to our spirit and our mind is to read or listen to the word of God.  I found in my deepest depression that simple music taken directly from the Scriptures seemed to sooth my soul.  I listened to the same songs for months.  Because concentration was such work hearing the songs over and over helped my spirit, mind and soul to absorb them.
  1. The book of Psalms is a storehouse of truth and hope.  Psalms like 23, 37, 42 etc. gave me great hope!  It sure helped me to know that David most likely faced some pretty significant depression himself.
  1. Mental illness affects our actions and behavior.  Sometimes those actions are inappropriate and may even be sinful.  But, those actions and behaviors are symptoms of the illness.  Many of the things that many of us have done over the years were not choices that we made so much as the results of messed up brain chemistry.  However, I’m still responsible for my actions and behaviors.
  1. Never ever stop.  The Bible is full of this kind of encouragement.  When you are going through hell, don’t stop!  Or you end up there!  When you are catching hell, don’t hold it.  The only time it’s over is if you quit.  When you fall, get back up; that’s what the Psalmist says.
  1. Choose to forgive (which of course is a process) those who have hurt you because they don’t “get it”.  However, if they continue to hurt you they are not safe people and it’s OK to end the relationship.  There’s nothing unchristian about that.
  1. Just as there are people who are not safe, there are churches and pastors that are not safe.  If a church doesn’t recognize mental health as a health issue but as a spiritual issue—run!  There are toxic churches and toxic leaders.  Recovery is hard enough.  You don’t need it to be harder within the very place that is to be a safe place of support.
  1. Watch out for “shame-based-grace” within the church.  You’ll find it in any and all demonstrations and non-denominations.  Jesus forgives.  He offers grace.  And He NEVER adds a “but” after he forgives.  If you hearing things like, “Oh yes, of course you are forgiven.  And yes, we love you. But…” watch out.  A lot of people in the Christian church have a much distorted view of God’s grace and forgiveness based on a performance orientation in their lives.
  1. Never forget how much God loves you!  He loves you.  He won’t leave you.  He’s for you.  And with Him for you—who can be against you?  No one!  Not even yourself!!!  You may not always feel like these things are true.  Don’t confuse that which is true with that which you feel.  Faith is based on truth not feelings.  Let God love you.  I’m convinced that the hardest thing that most of us have to do is to “let” God love us.
  1. Laugh at yourself.  Take yourself less seriously.  Laughter is a great gift from the Lord and sometimes I look in the mirror and think, “Oh Lord, what a sense of humor you have!”  I’m convinced we need to laugh and be hugged more!
  1. Stay away from Christians who act as though they have it all together.  No one has it all together. We are all in process.  No one has “arrived”.  No one gets to cast the first stone.  It’s too easy to feel like we are second class citizens in the body of Christ. But, we are not!  In fact, we are all a bunch of beggars telling other beggars where to find the food.
  1. Know that people’s opinions are like belly buttons—everyone has got one!  Really the only opinions that matter are the opinions of those who love us and most importantly what the Lord has to say about us!  And He has only good things to say about you through and because of His Son!

Brad Hoefs is the pastor of Community of Grace Church in Elkhorn, NE.  (www.communityofgrace.net) He has a beautiful wife, Donna, who has put up with him for over 30 years.  Together they have two grown children, both married, and two grandchildren.  They also head up an online subscription based worship resource ministry called WorshipOutlet.  Last year Brad started a Christian support group for those who suffer from mood disorders plus their loved ones called Fresh Hope (www.FreshHope.us).  Within 9 months of starting the group they had reached twice as many people as they have in the church!  A second Fresh Hope group started this past January with more being planned. One of the blogs Brad writes is called “Fresh Hope” and can be found by going to: www.fresh-hope.blogspot.com Brad serves on several task forces for one of the leading health care systems in Omaha, Nebraska

Why is mental illness so low on the global health agenda? | Humanosphere

March 28, 2011

Thanks to Ray Smith for sharing this link.

 

Why is mental illness so low on the global health agenda? | Humanosphere.

Father Moves Past A Once-Unforgiving Diagnosis : NPR

March 28, 2011

Father Moves Past A Once-Unforgiving Diagnosis : NPR.

Mental health recovery. On talking to the tail

March 28, 2011

There is an old story about a group of blind men trying to describe an elephant based on what part of the elephant they touched.  When you listen to what people say about mental health you realize how much time we all spend talking to the tail.  Even when we admit to other truths we tend to see our truth as foundational.  The may be more to the elephant than the tail but… we tell ourselves tail is obviously the main truth about what it means to be an elephant.  After all without the tail there would not be any elephant.

The Treatment Advocacy Center (TAC) for example considers itself the only true “advocate for the severe and persistent mentally ill.”  They correctly point out the scandal of jails being our biggest mental health centers but use that tragedy to advance their case for bigger and better psychiatric hospitals.  In the end their advocacy becomes little more than a tool to advance their own narrow vision of the proper place of the mentally ill in this society.

They view the mentally ill as chronically medically diminished and unable to function in life without life long medication.  As part of their illness, or so the theory goes, they dont even know they need help and our duty and responsibility is to help them despite themselves.  For TAC, coercion is an essential part of any realistic mental health policy.  Essential to their view, for example, is that we need to put an lot more people in psychiatric hospitals and for a longer period of time.  In Tennessee they would have us triple the amount of people we put in psychiatric hospitals.

They believe treatment is something you do to someone and not something someone does with other people.  Treatment comes from the professional to the mentally ill who simply dont know what they need.  It is a 1950’s model in a society where supposedly one in four will experience some form of mental illness in their life and leaves us with the message that we need to be wary and suspicious of people different than us, that mental illness leads people as less than people and whatever “they” think, feel, and want is not nearly as important as what we decide they need.

Does medicalizing  life issues really make things more understandable or life easier to live?  Is the message you need to fear the mentally ill and protect yourself from them really describe the elephant?  Is this all that is really real?

On the other side of the sea- far on the other side- you have those who regard even the term mental illness as an act of oppression against a group of people by another group for their profit and power.  In this view the real source of problems is not mental illness but the system that supposedly tries to help provide treatment.  The medical model is demonized.  Medication is the evil of all evils.  Many people who hold to this view see those who disagree with them as deluded at best and an active agent of propaganda at worse.

In our zeal to discover the fundamental pieces of the elephant we have lost the elephant.  We try to put the pieces together, but dont realize that when you put puzzle pieces together you are still left with a puzzle.

So where does this leave us?  Here are some things I wish we knew better.  I am sure you have your own list.

  • Mental illness is a tool to help us understand people better.  It is not the people we understand.  The map to Chicago is not Chicago.
  • We are all more alike than we are different.
  • Our biggest hope is not what we do to each other, but what we do with each other.
  • A person with mental illness can lead a happy and fulfilled life, but he must deal with the same issues as every other person has to deal with as a person.
  • Medication helps many people.  We often do not know why.
  • Medication hurts many people.  We ofen dont understand why.
  • Mental illness untreated and undeterred is a destroyer of human life and living.
  • We are biological, emotional, cognitive, social, historical, and spiritual beings.  Any attempt to reduce us to less leaves us with caricatures and not the real thing.
  • It is with greatest fear and trepidation that we should even consider making decisions for other people, for the time may come when someone makes decisions for you.
  • Hope works and without it not much else does.

Recovery. Maybe its about heartbreak

March 27, 2011

In the last years I have met and got to know people with virtually every mental health diagnosis I can think of. When I listen to them talk about their experience, when I think about my own, and the experience of people closest to me one thing seems to stand out in all of them. For many, if not most, the hardest thing they have had to deal with is the heartbreak. Their experiences of themselves, of their relationships, of what they believe to be important and possible has been fundamentally altered and frequently destroyed.

The mental illness….the mental health issues…..the mental disorder (or whatever term you use) has been real and pervasive. One friend told me that for him it was not an illness. It was an invasion. But as bad as the “illness” may be, the experience of what it means to have the “illness” is equally bad and a torture all of its own. One person told me the problem was not “what she had”. but what she lost and never thought she would get back.

Recovery is about getting past the heartbreak. It is about accepting bad things can be real, but need not be all things. It is about knowing that change is real and no day is a life sentence. It is about knowing that even if the best has not yet come that better can come. It is about knowing you are not alone, that others have shared your experience and want to share the hope they have found with you, and that in some day you may have the chance to share with others the hope you have found that are where you find yourself today.

Mental health recovery. Arguments in black and white

March 27, 2011

A friend and I  were talking about the subject of mental health recovery.  He said, “You know with so many people convinced they are right you would think we might know more than we know. Everyone has studies and statistics to show they are right and a great ability to ignore anything or anybody that contradicts them.”

I think the preponderance of what I believe the evidence to be shows clearly that medication is not nearly as effective as claimed, not nearly as safe as claimed. I believe that the preponderance of the evidence shows that pharmaceutical companies would not know the truth if it came up and bit them on the nose. I believe that a narrow minded focus on medication takes attention and focus away from other things equally important and even more central to mental health recovery. I believe that the prescription of medications is based on a system of diagnosis which is artificial, a matter of human decision and not scientific discovery, cumbersome and frequently inaccurate that the people who prescribe the medications dont even agree on how to use. I believe that many people I know have been tortured by years and years of a fruitless search for the “right medication” which has destroyed their self esteem and hope and made daily life more pain and misery than anything else. And finally I believe I have known people who have either died or whose health has been damaged beyond repair by their experience with psychotropic medication.

On the other hand I am totally convinced that I know many people whose lives have been saved and changed in a positive manner at least in part because of the medication they take. I am totally convinced that I know people who would have committed suicide without the stabilization that medication in part has helped them to find.

I believe that the evidence shows that the theories about why medication works when it does are unproven and basically nonsense. I believe that theories about why medication doesnt work are just that -theories. I believe the worst about medications are true and the best about medications are true. I believe the scales tip strongly against the promises made by those who argue for medication, but that is just my belief. I believe the most outstanding thing about what we know is what we dont know.

Most of all I believe that people have the right to choose. People can help me to open my eyes if they wish, but in the end I have the right to choose. I think most choices are not clear and perfect. I tend to believe far more in one side than the other, but I do not believe it is black and white. I have trouble with those who would convince me that their absolute truth is better than someone else’s absolute truth. In the end, I must confess, I wonder if that does not do greater harm to me than any medication I do or do not take. Be careful. The choice is full of danger. But the choice is yours and do not let anyone tell you that you would be better off letting them make it for you.

Hurt

March 27, 2011

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