The following are entries from the hopeworks blog archives:

 

 

 

 

 

 

ON treating people without stigma

 

 

Much has been said about the effects of stigma on those with disabilities.  Not much has been said about how to treat people without stigma.  The following are some suggestions:

 

1. AFFIRM their feelings.  Let them know their feelings matter and don’t try to reduce how they feel to a symptom of their disability.  Start with listening.  In the words of Stephen Covey, “Seek first to understand, then to be understood.”  You cannot convince anyone that they have importance and worth unless you let them know their feelings have importance and worth.  It does not mean you must agree with the way they feel.  Act like it is important.  It is.  This is a prime sticking point for many people with disability and a source of much anger and resentment.

2. ACCEPT them for who they are.  Treat them with the same dignity and respect you would like to be treated with.  They may sometimes do things you don’t like or that make you uncomfortable,  but it doesn’t make them any less human or any less deserving of your respect.

3. APPRECIATE their behavior.  It is a universal human need to believe that what you do makes a difference with others.  Everyone needs to know they have something to give.  You do and so do the disabled.

4. Hold them ACCOUNTABLE for their behavior.  Don’t turn a blind eye or deaf ear.  But hold them accountable as a human being and not as a function of their disability.  It is not saying that they can do everything others can do, because they may not.  It means holding them accountable for what they can do.  I wouldn’t blame someone for having a seizure.  I probably would hold him accountable for taking his meds.  Do not treat the disabled as china dolls.  Expect them to do what you expect of everyone.  Make the best decisions they can about the things they can control.

5. Make yourself AVAILIBLE.  If you want to treat someone as having value one of the best ways is to give them the gift of your time.  To treat someone as being important one of the best things to do is to tell them you are important enough to spend time with.

6. AFFECTION.  It is important to tell and show people you care.  You may do that differently with different people and different circumstances, but it remains so important  that you do it.

 

The net effect of doing all these things is twofold.  First you tell people that they are more than simply their disability.  Secondly you tell them they are important regardless of their disability. 

 

If more people did these things more often stigma would not be near the trauma it is for too many people who for reasons beyond their control suffer from some kind of disability.  I think I heard it said real well one time,  “If would would just remember there but for the grace of God go I, we would show a lot more grace.”

 

 

 

 

ON knowing what you need to know

 

 

 

“Knowledge is necessity.”  One of the most important things to know about in relation to bipolar and depression is medication.  Many of us do not know enough to even be intelligient consumers.  There are so  many meds and so many side effects and indications and contra-indications that if you are anything at all like me it all dissolves in a big cloud of confusion.  I know it is something I write about least simply because I know the least about it.

 

Last night I got a demonstration about a very important rule of life.  Too often we talk about what we do know almost like if we talk about it enough the things we are ignorant about won’t be so important.

 

We had a local psychiatrist Dr. Paul Miller come and talk about medication at our support group meeting.  In the space of 1 hour he talked about all the meds for depression and bipolar, how they worked, their side-effects, and when they were most suitable to be used.  Not only did he do it without talking down to anyone, but everyone who attended left feeling smarter.  It was past neat.

 

There is no way I can summarize all I learned, but here are just a couple of points that stood out for me.

• Different chemicals in the brain are associated with different symptoms of depression.  These three chemicals are dopamine, serontonin and epinephrine.  It is important to know which chemicals are associated with what symptoms and what anti-depressants deal with which chemicals.  Ask your doctor to explain what symptoms of depression the medication he prescribes are supposed to work best with.  There really is a method to all this and you need to understand the method.

• Atypical anti-psychotics  work well to end manic or depressant episodes for bipolar.  They do not do so well as maintanence drugs (preventive).  This is why they are prescribed so often in inpatient settings because they have the quickest effect.

• Anti-convulsants do better as maintanence drugs, but not as well to stop an episode.  They are not as fast.

• Anti-depressants offer the most risk of leading to suicidal behavior in the first 6 weeks.  They may give someone who doesn’t even have the energy to kill themselves the energy to complete before they do anything about the suicidal thoughts or depressed mood.

• Atypical anti-psychotics can have side effects related to metabolic processes.  There have been cases of people developing diabetes and other problems that didn’t have them before using them.  They must be closely monitored.

• There is a side-effect profile with each drug.  Make sure you know them before you start.  Do not let the cure be worse than the disease.

• It is critical, absolutely critical, that you work closely with your doctor.  This is a very complicated process.  Much of it is trial and error and the errors will go on much too long if you do not work as a team with your doctor.

 

This is only a small taste of what I learned.  Dr. Miller did great.  Knowledge is a necessity.  Sometimes you have to depend on the knowledge of other people, but it is hard to do that if you don’t even know enough to ask good questions.  Learn what you can about meds.  The odds are if you know more  the whole process of medication will go much better for you.

 

 

 

 

 

 

 

 

 

 

ON reaching young people

 

 

It is hard to reach young people who have “no problems.”  It is past hard to reach them when they suffer from some type of mood disorder.  As much as stigma interferes with adults accepting their diagnosis, it is even worse for a young person who by the nature of things is hyper-sensitive to  the way other people see him.  Kids with mood disorders are also likely to be in trouble which makes them that much harder to reach.  They don’t do well in school frequently.  They frequently try to medicate their moods and get involved with drugs and alcohol.  Without help they too often end up involved in the juvenile justice system.  They tend to be mistrustful and wary of what adults say.  Sometimes they just simply dismiss adults as irrelevant to what life is like for them.  In their eyes adults are out of touch and out of tune with the world around them.

 

It is a high stakes game.  Adults with bipolar, who had bipolar as a kid, and did not receive adequate treatment do very poorly as adults.   Listen to the stories of adults who seem to be perpetually involved in the judicial system.  So often when they describe their story it is of a kid with a mood disorder that either wasn’t recognized or didn’t get treatment, who got involved with alcohol or drugs, drifted into the  juvenile justice system and as an adult lives a life which is marginal at best.

 

What are some things that make it either less likely or more likely that you can reach the kids that you so much want to reach?  How do you get kids to buy into what you are trying to teach?

 

1.     They must believe that there is something in it for them.  They must believe that you are a source of  opportunity and not a source of deprivation.  Even if it costs in the short run there must be a pay-off and the pay-off must mean something to them.  Too often adults promise pay-offs which mean nothing  to kids and ignores the very real dangers and stresses they deal with on a daily basis.  The attractiveness of the message is very much tied to the  attractiveness of the messenger.  Kids do consider the source.  I know of a kid who was a star pupil in an anger management group.  He was in a 6 week program.  He was active in each session.  He asked questions and answered them in a way that showed he understood the material and seemed to agree with it.  At the end he thanked the group leaders for their “good ideas”, but said he wasn’t going to use any of them.  When the astounded leaders asked why he simply replied, “It just isn’t me.”  Truth for kids is personal and not propositonal.  What do you stand for in their eyes and do they “want to be like you?”  The answer to that question is a great indicator of whether or not you will be listened to.

2.     They must believe they have something to give.  Too often we give the message to kids that their input is irrelevant and not needed.  If they will just try harder to do the right thing everything will be okay.  Kids do not accept one way contributions.  To reach kids is a process which needs their participation, help, and unique talents in order to be successful.  Everyone is more likely to buy into a situation in which they have an essential impact.

3.     They must believe that it is safe.  They have to believe that you have their best interests at heart.  They are unlikely to do this if they feel like you are not listening and if you do not treat what is important to them as important.  If you don’t know where they “are coming from” they will have no reason to believe that they are safe  with you.  Many kids live in environments which say you better be careful because you can’t trust other people.  Many kids basically believe it is a dog eat dog  world and it is not very wise to drop your guard especially with people who are different from you in age, outlook, and experience.

4.     They must believe that someone cares.  They see others as being motivated by what they can get.  If you want to get them to listen to you they must believe that you are motivated by what you can give.  In particular it helps if you can show them that you care even when they are hard to care about.  They often judge what you say when they are at their best by how you act when they are at their worst.

 

The context from which you try to teach is as important as what you try to teach.  For example, many kids have been through something like anger management training.  They often “know” a lot about anger management skills.  They just don’t believe they work or are practical for their lives.  They see what is taught not as a tool to be used, but as a take-away to be discarded.  For kids the packaging is as important as the package.

 

Kids are not put off by truth.  They want to know better.  They are put off by arrogance and too often adults in kids eyes are arrogant even when they are not trying to be so.  If kids don’t ever seem to listen there may be more  at issue than the content of what you are saying.  Look at the process and you may find out that what you say may begin to make an impression you never thought possible.

 

 

 

 

 

 

On people falling between the cracks

 

 

Something is wrong.

 

It is possible, perhaps even likely, that people who have bipolar disorder and get appropriate treatment can and will lead happy and satisfying lives.  It need not be a “death sentence,” but yet for many it is—sometimes literally.

 

There are many people who are very effective treatment providers.  There are organizations like DBSA, NAMI, and Mental Health America that are doing wonderful work.  Yet something is still wrong.  The suicide rate for bipolar disorder is still through the roof.  The only treatment that many people receive is at the local jail.  A very large percentage of people with mood disorders have a dual diagnosis like substance abuse.  What still seems clear is that with all the good stuff happening 3 things still remain true:

1.     Not enough people get in the mental health system.

2.     Not enough people stay in the mental health system.

3.     Not enough people get enough help while they are in the mental health system.

 

Why?

 

Some reasons seem real clear and seem to be widely known to all.

·        There are not enough providers to help all the people that need help.  This is especially true in smaller towns and rural areas.  There are especially not enough doctors to manage medication who are actually trained to do so.  Where I live the wait for an initial appointment at the local mental health center is 8-12 weeks.  To see a doctor is much longer.

·        As many people have discussed the resources that people need to get mental health care are inadequate or nonexistent.  In Tennessee 1 out of 6 people do not even have insurance.  Many who rely on state insurance are getting ready to lose it.  Even those who have insurance normally have inadequate mental health benefits.

·        Stigma is real and alive.  No one wants to be a “crazy”.  People are reluctant to seek services when seeking those services would result in them being stigmatized in the eyes of others or even more particularly in their own eyes.

·        People with mood disorders tend to have other problems which take them out of the mental health system and into other systems like the judicial system.  Jails and prisons are our largest mental health treatment centers.  People who end up in jail because of mental health issues tend to continue to end up in jail.  It is a revolving door that never stops revolving.

·        Support groups or peer driven services tend to be too far and too few in between.  The power of peer support in the treatment of mental illness is well documented, but still, despite a great effort by many, it is a resource largely unavailable to many people.

 

I have talked with a lot of people through “Hopeworks” that have fallen between the cracks.  I have taken some of the feedback I have gotten from them and want to suggest some additional reasons why the notion of recovery does not “sell” to some people.  Think about these notions as I discuss them and see if they are confirmed by your experience:

 

1.     The perceived arrogance of those trying to help.  Many people talk about being treated not as a person who has bipolar, but as a person who is bipolar.  They feel like people talk down to them and that they have no role in their own treatment other than to “follow instructions.”  You don’t tend to listen well to people who you believe have no idea what it is like to be in your shoes, and who also think that their shoes are much better than yours.

2.     Lack of practical and pragmatic help.  When people with bipolar seek help their life is normally a mess and they are in deep pain.  They are searching for solutions and for solutions relevant to their life situation.  Many times people seemed to feel that the help they received was just not very helpful.  They were told generic prescriptions to their life which just didn’t fit.  Many people with bipolar report being misdiagnosed and given treatment which just made things worse.

3.     Lack of information.  Despite there being more information available about mood disorders than ever before there are still many people who are sadly ignorant of the nature of what they must deal with.  They find life overwhelming and frightening and are likely to deny a truth they don’t understand or try to medicate away feelings they can’t deal with.

4.     Lack of recovery experience.  Many people with bipolar don’t know anybody else with bipolar who is successfully in treatment.  They do not have the experience of a community of recovery.  Again that is something that many people are trying to change,  but still too many people view it as uncharted waters with not map or model to guide them through.

 

The combination of these experiences leaves many people not buying into the notion of recovery.  With the factors talked about before it leaves too many people with ravaged lives and our society with too much unaddressed tragedy.

 

 

 

 

 

 

 

 

 

ON bipolar as a generational tragedy

 

 

In becoming involved with Hopeworks one of the biggest things I have learned is that bipolar disorder is more than a personal tragedy or even a family tragedy.  It is often a generational tragedy.  Many families, too many families, have a family tradition of bipolar disorder.

 

The sequence described below is not a description of any one family, but describes a pattern that I have heard from many people.

 

1. One parent is bipolar.  Sometimes this is diagnosed, sometimes not. Sometimes all that is described is “you never know what he is going to do next.”

2. The bipolar affects the relationship with the spouse and profoundly affects the way children are raised.  Anyone who has lived in a living situation with a person with bipolar disorder can tell you that everyone is wounded in many ways.

3. The wounded child has greater and greater problems.  Adolescence in particular is a time of great trials.  If they have received the genetic vulnerability to bipolar from one of their parents it shows up here.  They tend to fall easy prey to things like substance abuse, sexual acting-out, identification with anti-social peer groups.

4. As the adolescent moves into adulthood difficulties in life continue to get worse.  Often they themselves have a fully operating mood disorder by then.  They have a difficulty achieving much success in either career or relationships.

5. Many times they go from relationship to relationship and the wounds of childhood are frequently revisited.  They learn once and for all other people are not to be trusted.

6. Finally they find a relationship they hope will give what their relationships as a child never gave.  They have a child.

7. They commit to the idea that their children will have a better childhood than they did.

8. Despite that commitment the personal issues that they must deal with tend to get in the way of raising a child.  Sometimes they repeat the patterns of their parents.  Sometimes they don’t.

9. They have an underlying fear and anticipatory guilt that their kids will have “what they have.”  They torture themselves for the genetic crime they feel sure they have committed on their children.

10.  Their kids start to have problems and the whole cycle moves to

again another generation.

 

Does it have to be this way?  Of course not.  But this pattern is too frequent and is part of the reason that bipolar disorder is a public health issue.  The effects of bipolar disorder tend to have a life expectancy far past the life expectancy of any one person.  Without effective treatment this illness is truly a ravaging monster that consumes any and everything within its path.

 

 

 

 

ON when you don’t matter anymore

 

 

The most horrible thing is to believe that you don’t matter anymore.  I remember listening to my wife talk about the people she met when she was on the psychiatric ward about a year ago.  Most of the people she met were “frequent flyers.”  They had given up on hoping on more from other people, from doctors, from medicine, and most tragically from themselves.  They were defeated.  Life for them was an illusion, just something they walked through, but which gave them nothing and wanted nothing from them.

 

So often that is the message that the mentally ill draw from their life.  They either don’t have primary relationships in their life or the ones they have are just a shell of what they once were before their illness mangled them.  At best people tolerate them.  More often they avoid them.  Many mentally ill have mastered the skill of invisibility.  Even when someone looks at them they see only the disorder and not the person.

 

Without knowing you matter the air just goes out of life.  Life is nothing more than what you do while you wait for the next bad thing to happen.  You try to take your mind off it as much as you can, but you avoid hope like the plague because you know you will be disappointed and losing hope is much worse than never having it.

 

You lose hope when you start to believe that you can’t do anything that matters or that no one will give you the chance.  Having a job is so central for hope.  For the mentally ill getting and keeping a job is sometimes hard.  I know of more than one person who hides their diagnosis from all that they work with in fear that if they know their job will be gone.  People don’t like to hire “crazies.”  If you don’t believe that then ask someone with a mental health diagnosis.  They can tell you.  I have one friend who was fired from a job even though he had not had any problems.  His new employer found out from someone on a previous job what his diagnosis was and just “changed his mind.”

 

You stop believing that you matter when it seems like you don’t matter to anyone else.  Relationships get damaged by so much bad history and so often the capacity for forgiveness just isn’t there anymore.  Your choice is to live with misery or live alone.  Stigma is real and the mentally ill worry about how new people will treat them if they find out.  Every new relationship has to pass the “is it worth the risk test.”  Often they don’t.

 

A large part of recovery is just two things:

1.     Find something to do that matters in life.  People really need to feel like what they give, what they can accomplish makes an impact.  All people need to know that the things that are important to them are important to others. 

2.     Find someone you matter to and that matters to you.  We are all each other’s lifelines.  Hold fast to yours.

 

It is an issue that all of us deal with everyday.  If you know you matter you may not know how lucky you are.  For too many people the answer  to that question in their eyes is no and they lack the support or opportunity to find out different.

  

 

 

 

 

 

 

 

ON Worry

 

 

Worry takes the taste out of life.  It leaves what happens lost in the dread of what might happen.  It turns our remote control to the same channel over and over again.  It turns life into a rerun that never turns out the way we want.

 

We worry about worrying and try to increase our control over our lives.  Control we are sure is the antidote that will make things okay.  We try to make enough money.  We try to get people to see things our way.  We try to influence what other people say, do and think.  Sometimes all we do is cross our fingers or pray.  Sometimes we just try to turn it off and hope it goes away.

 

Fear attacks faith and leaves us spinning our wheels wondering what we can count on.  It leaves us wondering what we will do  when awful things happen and why so many awful things happen.  It leaves us with the knowing conviction that this is all there is.  Each day is a fearsome battle, but there is no war to be won.

 

We all know we shouldn’t worry, but we do.  We tell ourselves that it doesn’t make any sense, but while we are worrying nothing else makes sense.  It is a terrible drug.  When things are going good—too good—it is so hard not to seek another fix and start wondering when things are going to fall apart.

 

I know all these things, but sometimes still worry and sometimes worry a lot.  Things are sometimes very hard and sometimes worry seems more true than anything else.  But more and more now I worry less or at least take it with a grain of salt when I do. 

 

Here are some suggestions about worry.  I don’t know that any of them are any startling insights, but maybe they will help.

 

1. Sometimes things are worth worrying about.  Worry can be a signal that prompts corrective action.  Once you have heard the signal though focus on the action.  Worry is a self fulfilling prophecy.  The more you obsess about stumbling the more likely you are to fall.

2. Know there is a difference between feeling like something might happen and knowing that it will.  Don’t let worry stand as an unchallenged truth.  We worry about things all the time that are not important.  We frequently misperceive the likelihood of things happening.  Some things we can’t do anything about.  Some things are just not worth the effort. 

3. Put things in perspective.  We worry so much about what might happen next that we forget how far we have come.  We forget to be grateful and thankful and we don’t give ourselves credit for our ability to cope.

4. Say more “thank you’s” and you won’t have to say so many “Oh no’s.”

5. If you worry too much about something ask yourself what you are getting from worrying?  Sometimes we get payoffs that are hard to give-up. 

6. Ask for help.  Tell others what is going on.  Get support.  Get feedback.  The more you feel it is all on you the more you worry.

7. Pray.  If you are the greatest power there is maybe you do have something to worry about.

8. Gain knowledge.  Many of the things we worry most about  don’t seem quite so bad when we understand them better and have a better sense of what we can do.

9. Every time you get caught up in worry stop.  Don’t go on until you can think of 5 things you don’t need to worry about.

 

 

There are probably a million more things you can do.  I once knew somebody who named his worry Fred and wrote it a letter each night, until finally he realized that Fred was not worth talking to anymore.

 

Life is hard and it is okay to worry.  When it makes sense act on it.  But an awful lot of the time it is not and when you can remember that worry is, more often than not, just a bad opinion that you wouldn’t listen to if it wasn’t yours it is a whole lot easier to let it go and go on.

 

 

 

 

 

 

 

 

 

 

ON loneliness

 

 

I once knew someone who told me the hardest thing in the world was not to be alone, but to be in a room full of people and still be alone.  He said he knew, because that’s the way he always felt.

 

Most of the people I know who deal with emotional illness tell me the hardest thing is not the illness, but the chronic loneliness that too frequently marks the rhythm of their days.  Bipolar disorder and other emotional illnesses are jealous lovers.  They would prefer that everything in life be about nothing but them.  They do not suffer well rivals that would threaten that.  They would rather gorge themselves on the lives of the people they afflict until there is nothing left but them.

 

One lady told me that she could trust no one with the fact that she was bipolar.  She said that when they found out then nothing was about her anymore, that everything was about bipolar.  She said that one day she hoped that she could find someone that she could be angry at or sad about or excited about that the first question wouldn’t be were these things a symptom of her illness getting out of hand. 

 

Other people have told me that they can’t risk caring about someone because they can’t stand the risk of losing one more person.  Their illness has so disrupted their ability to sustain relationships they no longer trust their ability to relate.  One lady told me that she had recently  been thinking about suicide.  When I asked her had she told anyone or talked to anyone she paused for a moment.  “I don’t have anyone to tell.”

 

Recovery is not an operation you perform on yourself.  You are not a machine to be tinkered with.  Recovery is a transformation of your life with other people.  Life to be lived must be lived with other people.  Even Robinson Crusoe had Friday.  Prison officials know that the quickest way to break a hard core person is to not allow him contact with others.  In fact, they have learned that is the quickest way to drive them crazy.

 

We all live within a web of other people.  When we don’t—whatever the reason—our capacity to live suffers dramatically.  It doesn’t matter how much stuff you “have.”  Life is about more than what you get.  It is about what you give.  It is about knowing that others feel like you have something worth giving and you are worth receiving what they have to give.

 

This is one of the simplest, but yet most basic parts of recovery.  You must have someone you can be with and someone who wants to be with you.

 

I once asked a lady with bipolar what she thought was the hardest thing for people without bipolar to do.  She didn’t hesitate.  “They are so concerned with what I have, they never get to know who I am.”

 

 

 

 

 

ON the necessary and sufficient conditions of recovery

 

 

Bipolar disorder is a public health emergency.  Bipolar is a savage beast that literally devours any life it touches either directly or indirectly without adequate recovery.  Among its many effects are:

• Much higher than average suicide rate.

• Much higher involvement in substance abuse than any other population.

• Family destruction and dysfunction on a massive level.  Broken marriages, children raised by parents who can’t even take care of themselves etc.

• Higher than average rate of incarceration.  Any legal official will tell you that our jails are filled with people who are there because of inadequate or unavailable treatment.

• Massive economic impacts in terms of loss wages as well as costs incurred for a wide array of government services.

 

 

It is important to realize it is more than just an individual affair.  It impacts the way that we as a community live and care for each other.

 

There are many necessary conditions of recovery.  By themselves none of these conditions are sufficient for recovery.  When a condition is absent from someone’s life then another condition must try to serve that function and failing that the chances for recovery go down.  The lack of many of these conditions is also a reflection of where we are as a community.

 

1. Medication management.  Without appropriate medication people with bipolar disorder normally do not do well in life.  There is a problem, in particular, in small towns and rural areas.  There are not enough medical people available with experience and knowledge about bipolar to provide adequate medication management to those who need it.  In Maryville it takes 8-12 weeks to get an appointment at the mental health center and that does not even include seeing the psychiatrist.  One nationwide survey shows that antidepressants are still the first drug prescribed for over 50% of those with bipolar despite widespread knowledge that this makes bipolar worse.  The study explains that more and more primary care physicians are assuming the burden of medical management of bipolar and too many of them lack the knowledge to do an adequate job.  Many of the people with bipolar lack the financial resources to get adequate care because they do not have enough job stability to have insurance coverage.  There are too few people having to take care of too many people.

2. Counseling-  Much of what is said above is also true here.  In working with the DBSA  chapter in Maryville I have met many more people with inadequate or absent counseling than I have met people for whom this condition is fulfilled.  Life style management is such a key to a successful recovery and a good therapist or counselor is so essential to this happening for most people.  Again there are too few people taking care of too many people.

3. Support systems-  Peer support can offer an essential role in recovery.  Support groups are not nearly as available as they should be.  In the Knoxville metro region, for example, there are 3 support groups for people suffering from bipolar disorder that I am aware of .  In contrast there are AA groups seemingly on every street corner.  There are groups like the Tennessee Mental Health Consumers Association that try mightily to provide peer supported direct services to as many people as possible but they face an uphill battle.  The unfortunate truth is that without adequate funding most support groups are volunteer based and operating on a shoe string budget at best.  I am aware of one company Valueoptions that has at least recognized the potential  impact of peer directed services and is trying  to find a way to fund them.  The same conclusion applies that applies above.  Not enough stuff for enough people exist.  In particular people with bipolar who have a more marginal  resources have even less services available.

4. Community support-  Stigma is a major problem.  Even thought there have been numerous efforts by many people to educate people about mental illness there is a major amount of stigma in the larger community.  Person after person that I have known with bipolar has told me tales of being fired when employers found out their diagnosis.  They do not let people know what is going on with them for fear they will be dismissed as just another crazy.  Their perception is that all too often they are not welcomed within the major institutions of this society.  The idea that people with bipolar or any other mental illness can with adequate treatment be a successful and contributing member of society does not get much support in most communities.

 

 

These are a few of the necessary conditions for recovery.  There are many positive forces for change.  Organizations like NAMI, DBSA, Mental Health America and many others are trying hard to make sure that these conditions are available to all who need them.  Yet deep problems remain.

 

The mental health system is overstretched and inadequate.  It treats things as individual problems and is not part of a larger community health effort.  Much of what needs to be done cannot be done by a doctor or therapist.  Much of it must be done by us.  It means developing communities that do not write people off because of their disabilities or the labels attached to them.  It is too easy and too often that we mark others off as not worth the effort or the hope that it would take for their life to improve.  I wonder what it says about us?

 

 

 

On seeing good and doing good

 

 

I listened to a man in a recent meeting of health care advocates ask the most common sense question I have heard in a long time, “Does all this do any good?  Aren’t we just blowing smoke?”  I certainly understand his cynicism and pessimism.  On more than one occasion I have shared it.  But lately I have begun to look at it in a different way. 

 

The two biggest roadblocks from where I sit are these:  The people in power see health care as an elective issue.  They would like to do something about it, but only if they have the time and money.  Normally there is not enough of either and so health care stays on the back burner seemingly never destined to come to a full boil.  Secondly, they believe that some people just cost too much.  There is just so much room in the lifeboat and some people are just going to have to swim along side.  That’s reality.  Or so they believe.

 

We make much of the health care plans of other countries and bemoan our own system which treats illness as a crime when the sick are poor and without insurance.  We insist that we could choose the same kind of system as some of these other countries.  But there is something we don’t always understand.  These other countries don’t just vote differently.  They see differently.  They share a vision that we don’t.  It doesn’t matter who is voted in because they all see with the same eyes.  What is common sense to them is to all too many people in this country nonsense.

 

What I understand better now is that this is about public policy, but it is about more than that.  It is about our collective heart.  It is about how we see and what we care about.  It is about winning battles, but in the end, it is more about winning the war.  Losing some battles may be indispensable to winning the war.  Phil Bredesen’s greatest triumph—the rape of TennCare—may also be his greatest defeat in the end.  He showed in clear terms the brutality of a society which accepts as a matter of fact that people who are inconvenient and cost too much should be thrown off the lifeboat. 

 

Some of the most recent battles have been profoundly disappointing to me personally.  This past spring I testified at the TennCare Oversight committee about TennCare.  The most disappointing part of the experience for me was the testimony of the TennCare commissioner.  I walked away knowing the insurance that my wife counts on in order to live any semblance of a quality life was going to be taken away.  It was going to happen because they could and because they thought it was the only reasonable thing to do.  For the TennCare commissioner health care was without question an elective issue and without any doubt some people just cost too much.  When the legalities are over with they will toss Linda off the boat.  Each day I know the clock ticks for us and I hate each movement of the hands.

 

As I have written elsewhere on this blog the hardest part about battles is keeping sight of the war.  “Health care is a human right.”  Those are the parameters of the war.  The other army is bigger and stronger right now but we have an advantage.  Anyone can get sick.  But for the grace of God anyone of us could be the ones thrown off the boat.  Our strength is in showing that when one of us is thrown off the boat something of all of us is lost.  And to let people know when it is okay for anybody to be thrown overboard that eventually it may be their turn or the turn of someone they love.

 

My question when I look at the candidates for president is not so much how they will vote as how they see and how will they try to teach others to  see.  There is much about John McCain as a person that I find very positive.  I do think however he sees healthcare as an elective issue and I think he might be profoundly sorry, but I think he is okay with people being thrown off the boat.

 

I think sometimes I am very powerless and nothing that I try to say or do on this issue really matters.  Times are more than hard.  For us they are also scary.  But I also know this is a war for hearts and that while many battles may be lost in that war I think we will prevail.

 

God bless each and every one of you.

 

 

 

ON wars and battles

 

 

Battles can sometimes be so overwhelming that we forget the war. 

 

I have known many people who have went through very hard times in their lives.  How well they deal with them seems to have little to do with what caused the hard times or even how hard the hard times are.  It seems to have to do with rather or not they remember there is a larger story.  I knew one person with bipolar who had a simply miserable time finding a medicine that worked.  They literally seemed to be a walking, talking collection of side effects.  At one point I really wondered if the bipolar could be nearly as bad as the medicine.  I asked her how she tolerated the medicine with all the discomfort that it caused.  Her answer was real simple, “I want to get better and finding the right medicine is going to be part of that.  Every medicine that doesn’t work is one step closer to the one that does.”  What she could not hope to deal with by herself she could deal with in the service of recovery.  The battle was horrible, but the horror was survivable because her focus was on winning the war.

 

When I hear stories about people who have thrived in the worst of circumstances this always seems to be true.  They find a purpose to their suffering.  Their life is lived in service to some idea or some something bigger than themselves.  How many times have you heard of people who have moved past serious problems because they wanted to clean their life up for their children?  I know of one lady who with every breath is convinced that she is the most unfair victim of a hard life that it is possible to be.  The idea that there could be something bigger in her life than her suffering is totally unreal to her because in her life there is nothing more important than her and how she feels. 

 

In the journey of life to have difficulty on the road is part of what it means to be moving at all.  It seems like maybe there are two poles and we exist somewhere on that continium.  On one end the only important question is how hard it is and how bad it feels.  The only important thing is how to make it feel better or failing that to at least escape feeling bad.  On the other hand the only important question is how far we are getting regardless of how hard it is to go.  All suffering is bearable as long it is in service of a larger goal.  Few of us exist all the way to one end or the other.  Most of us I think live somewhere in between and where we live probably changes as we go through life.  Sometimes we do better.  Sometimes we do worse.  However we do just seems to be part of what it means to be human.

 

You can’t ignore how bad you feel.  How you are has a great deal to do with where you are going.  I remember driving down a very foggy road one night.  I literally couldn’t see where I was going or even where I was on the road.  I had slowed down greatly, but that didn’t seem to help.  Finally something just said, “Stop!”  I did.  When I got out of my car to see where I was I found out I had went all the way across the road, was driving on the wrong side, and about 6 inches from driving off the road into a gutter.  It is possible to be doing so poorly that we lose focus of where we are and where we are going.  The reason for stopping was more than the fog.  The reason was it was foggy and I couldn’t see where I was going.  I stopped not just to stop, but to make it possible to go further.

 

It is probably a small space, but an important one.  The purpose in taking care of yourself is not  because you are the most important thing.  It is because you are not and unless you take care of yourself you can never live for what life is about.

 

One of the scariest scenes in any movie I have ever seen is in “Saving Private Ryan” when they are trying to land on D-Day.  Many of those there seemed so terrified by the battle that they forgot they were fighting a war.  I have never been in any situation even remotely that scary, but I do know what it is like to have the “little story” be so overwhelming that the “larger story” is lost.   When I lose my sense of a “larger story” I am left only with a hope of survival and a prayer for rescue for a situation in which both seem to be not very real.

 

I had someone one time explain it to me very simply.  “The secret to life is not to know why you suffer.  It is to know why you live

 

 

 

 

ON the attraction of foolishness

 

 

One of the mysteries of life is not just why people do foolish things, but why we seem so easily to fall in love with them.  Even the best of us seem to have an amazing ability to buy into foolish behavior.

 

I look at things like drugs or alcohol and ask myself how can someone buy into something that is so obviously self destructive, but there seems to be no shortage of people who do.  When I speak to them is that in their eyes using drugs make very good sense.  I talk to people who have problems with out of control anger and wonder how can anybody buy into violence but yet there is no shortage of those who believe that violence make very good sense.  Most of us I think have things we love that are so bad for us and yet we find every way to make sense of them and continue proudly in their service.

 

I have come to the conclusion that it is a 3 step process and that these 3 steps describe much of how we make our lives miserable.

 

1. The first thing we are offered is escape.  The first promise is to take us away from bad situations and bad feelings.  How many people have gotten involved with bad relationships whose first lure was that they promised us escape from something else.  We begin to fall in love with something when it some way it offers deliverance from something we don’t want to live with.

2. The second thing we are offered is payment.  Here is what you can get if you do this or get that.  The thing we fall in love with makes us feel better.  It is obvious how this works with something like drugs or alcohol but consider how it works with other things.  The thing we come to love gets us something we love.

3. The third step is the key.  In the first step it delivers us.  In the second step it sells itself.  In the third step we sell ourselves.  We decide that life is not normal without it and whatever we have to get it we will do.  The third step is one of allegience.  It is the development of allegience that overrides judgement.    It is at this step that we become blind to the foolishness of what we are doing.  This is the difference between someone who uses drugs and someone who is an addict.  This is the difference between having something and something having you.

 

One good way to measure your life is to look at what you have allegience to.  You have allegience when you will do something regardless of the consequences  it brings you.  Most of the time, in fact, you try very hard to stay unaware of the consequences of those things you have allegience to. 

I think I have learned one other thing about allegience.  We don’t tend to change much when people tell us not to care about the things we care about.  Not only can we be foolish, but we can also be stubborn.  The two in fact seem to go together.  Allegiences change when we find something else that is more worth caring about.  I am convinced the only answer to addiction is to find something you care about more and then reaffirm that choice on a daily basis until your allegience grows stronger and stronger.

 

So if you are constantly shooting yourself in the foot look at what you care about.  What do you consistently display allegience to?  Is it worth it?  Is there something that is worth more to care about.

 

We are never cured.  As human beings we have a life-long penchant for foolishness.  But remember even if you find yourself caring about things that only lead to foolishness and problems it doesn’t change a central truth.  Just because somethings are not worth caring about doesn’t mean that nothing is.  You just have to find it.

 

 

 

 

ON thinking clearly

 

 

Often people are told “think before you act” only to find out that everything they think makes the situation worse rather than better.  We have infinite skills in finding sense in the things we do when there is none.  The real problem is not so much that people do not think.  I think it is impossible not to think.  The real problem is how people think.  It is the “how” of thinking, rather than the “what” of thinking that defines how clear our thought processes are.

 

When dealing with negative feelings like anger, anxiety, fear, and guilt the most important tasks are to use our thinking processes in such a way that we do not make a bad decision worse.  Dealing with negative emotions is basically a problem solving task (something is wrong and something must be done) and our hope is that the way we think helps us to solve problems rather than create them.

 

I am going to suggest a series of 4 questions that we can ask ourselves in these situations that if used will help to make us think clearer and solve problems better.  Just knowing these questions though is not enough.  You must practice using them enough so that they become second nature to you or you are likely not to use them in the type of situations you need them most.

 

1.     Importance-  Is what we are angry about (sad….anxious…guilty….) really important or am I getting upset about something not worth the effort and trouble?  How much time do we spend tilting at trivial windmills?  The serenity prayer could perhaps use an addition about “showing us what is not worth worrying about.”  All of us have situations or subjects we are prone to over-react to.  It is a powerful survival skill to be able to tell the difference between an irritation and an assault.  Check it out before you jump.  Is it worth it?

2.     Accuracy-  Do we have the evidence to back up our feelings?  What do we base our perceptions on.  Are we taking things personal that are not personal?  Are we over-generalizing?  Are we acting like we can read other peoples minds?  Get in the habit of asking yourself he question, “How do I know?”  When we are already ready upset the chances of further misperception skyrocket and we always need to tell ourselves just because something feels so  it doesn’t make it so.

3.     Control-  Even if it is important and even if my feelings are justified is it something I have any control over?  Is this something I just need to accept and live with.  How often have you brought yourself misery trying to control something you have no control over?  I know I have.  Get in the habit of checking out your impulse to action.  Ask yourself, “Can I do anything about it.”

4.     Cost-  If it is important and my feelings are justified and I can do something about it then is it worth it.  Will I pay more than I gain?  How many times have you tried to teach someone a lesson, only to find out the lesson is on you.  This is particularly true for people who have a problem with anger.  One of the greatest problems people with anger problems have is that they do not tend to question the impulse to revenge and “teaching people a lesson.”

 

These four questions do not exhaust all the ways that you can “think clearly.”  But if you do practice them and make them habits they offer you a potentially very effective cognitive first aid to keep yourself from implementing self defeating behaviors.  The real task is not so much to “think before you act” as it is to “look before you leap.”  The real question is do your cognitive processes open or close your eyes?  Do your thoughts help you to see clearly or further dim your sight?  Think about your life for a moment.  How well do you see?  Is it time for your to open your eyes?

 

 

 

On When we can’t do anything about it

 

A kid died today in Knoxville.  He was 15 and he was shot by another kid who was 15 in the school cafeteria.  The shooter walked calmly out the door and down the street before police picked him up.  Not that long ago another man walked into a Knoxville church with a shotgun and by the time he was done 2 were dead and 7 wounded.  The  crimes were committed for different reasons by different people.  In one case the shooter was shooting at anyone and everyone.  In the other instance the shooter was trying clearly to shoot only one person.  Both scare me, but for different reasons.  I am terrified that someone would walk into a church and randomly start shooting.  But I am equally terrified that our schools have become the kind of place where people solve their arguments with each other with guns.

 

What equally scares me is the feeling that such things are to be expected and there is nothing we can do about them.  I have worked with youth in mental health settings over the last 35 years and the biggest change I have seen is that violence has become a mundane matter.  For many of the kids I have worked with guns are an expected part of reality.  Many of them talk about either being shot at or shooting at someone else.  For kids in particular that are involved in drugs the reality of guns as a fixed point in their life is very real.

 

Many of them have told me that the possibility of being shot is just something they have to accept.  These are not just inner city kids saying this.  These are kids from every setting and cultural background.  They have told me.  “You just don’t understand what life is like today.”  If I had to make a choice of the crazy man who thinks shooting others is a big deal or the adolescent who just sees it as a mundane part of life I know who scares me the most.

 

I am not saying this is a description of all kids or even a great majority.  I am saying that it is a description of a significant enough portion so as to effect the culture that all kids grow up in.  And unless we change our view from we can’t do anything to we can’t not do anything it will become a more significant part of the social landscape of every young person.

 

As gangs have grown in stature I have met kids from rural surroundings or small town who insist they are “bloods or crips.”  The whole gang identity seems to be so compelling to so many kids.  It seems to be giving them something they don’t seem to find many other places and violence, particularly violence with guns, is an accepted part of that life.

 

I don’t think I am smart enough to know exactly what to do.  I don’t have a great antiviolence, antigang  program.  I do have a couple of ideas.

 

I think there are many programs that probably offer some chance of success.  Anything that educates kids about violence and gives them something else to belong to is worth pursuing and supporting.  There is a wider strategy though that might be considered in the long run.

 

We measure our lives by how we do as personal beings and seldom as corporate beings – a members of a larger society.  We pursue personal fulfillment with a vigor, but have lost faith in our capacity to make a wider impact.  Do what you can do to make this a better world to live in.  Step past just you having a better life.  There are so many things from environment to health to education to poverty to justice which collectively help to sow a different soil than the one that has given birth to our current situation.  Do something.  Know that a lot of little things make a big thing.  Know that a lot of little things led us to the big things  we have now we would like to get rid of.  Help to sow a better soil for all of us. 

 

 

ON not being taken seriously

 

 

What if you knew that you would never be taken seriously.  No matter how hard you tried, no matter what you said, no matter what you did—what if you knew, that it wouldn’t matter, and no one would ever take you seriously.  What you thought, what you felt, what you valued, what you wanted would never be taken as seriously as it was for other people and you couldn’t do anything about it.  Think about what that would mean.  Think about that kind of life.

 

I have a friend with bipolar disorder who is terrified that the people she works with will find out about her diagnosis.  She is afraid that it will change the way people treat her at work even though she has never done anything “bipolar” at work.  But she is afraid of more than that.  I heard her explain it once.  “If people know you are bipolar then every time you get angry they will believe it is because you are bipolar.  If you get upset they will believe it is because you are bipolar. If you have a bad day they will believe it is because you are bipolar.  I can not do anything that everybody else can do.  I can only be bipolar.”

 

I remember years ago when Linda was having a very hard time with grand mal seizures.  One of the “spiritual leaders” of the church asked her during a prayer group meeting, “Do you believe that all the trouble you are having could be due to the sin in your life.”  The message to her was clear.  If you are epileptic you can’t even have a real relationship with God.

 

That is the message of stigma that so many people with disabilities live with every day of their lives.  “You are so defective you can’t even…  have an important idea…. a real feeling….a good relationship…make good decisions…accomplish anything in life.”  There is a real important book called, No Pity by Joseph Shapiro that talks about how disabled people throughout the United States are fighting against stigma.  He talks eloquently about how stigma leaves people stuck in a “segregation of daily life.”

 

How does a person survive not being taken seriously?  How can you take anything seriously if you are not taken seriously?  Recent events in my life have left me with a small taste of what it is like.  I have been unemployed for about 13 weeks.  I have found that mental health jobs are tough to find in this economy.  Given a choice most people want to hire people in their 20’s, not their mid 50’s.  After 35 years experience in mental health no other employers take seriously the idea I can change careers.  Minimum wage jobs laugh at me when they see my experience and education.  The crowning achievement of the last 3 months was when I recently go a letter from Target telling me that I was not qualified to be a stock boy. 

 

Each day is an emotional rollercoaster  for me.  At times it feels like I am breathing anger and resentment.  At times the sense of loss and discouragement seems suffocating.  At times I just feel invisible and want to shout at the top of my lungs, “Can’t anybody see me???”  I have never felt as much fear as I feel now.  Beneath it all is the nagging question,  “What if it doesn’t change?  What am I going to do?  Are we going to end up on the street?”

 

For 13 weeks I have lived only a small measure of what so many people with disabilities live every day of their lives.  I have a friend with bipolar disorder who recently told me that he was beginning to understand how important the issue of stigma was.  I told him that in one sense it was everything.  We are all the spawn of the circumstances we live with and none of us will believe we matter unless we are told so.

 

My “disability” will end, but every day I marvel at the courage of those whose disabilities will never end and who every day with every action and every word must take on the burden of proving to those around them that they matter. 

 

 

 

 

 

 

 

ON love and hope

 

 

1 Corinthians 13:7

Love…always hopes.

 

 

 

Hope is a gift given to us by those who love us.  It is a gift we give others by loving them.  We face life with hope when those around us show us we have cause for hope.  Those around us face life with hope when we give them cause for hope.  Hope is inseperable from how others treat us and we treat them.

 

Love tells us we are on a road that leads to good places.  It is when others tell us that we are worth something and that being worth something matters.  It is the message that you are worth the time and worth the effort.  It is the message that they are hopeful about you.  And in the end unless others are hopeful about us we don’t have much hope about where our life is going or what is possible for us.  Hope grows best when sown in the hopefulness of others.

 

This is why it is so difficult for those with mental illness to have much hope in life.  The overwhelming message they get from others is that they are not hopeful.  It is the message too often that they give themselves.  When you can’t make it from the beginning of the day to the end without catastrophe it is hard to find much to believe in.

 

A large part of the problem is that we confuse one basic thing.  We think that love is about how we feel about what others do or how we feel about who they are.  To a degree that is true, but there is a more fundamental truth that is illustrated over and over in the words and life of Jesus Christ.  Love, more than anything else, is about who we are.  Love is not about the value others are for us, but about the value we give to them.  Love is constant only when we are constant.