Showing posts with label health care. Show all posts
Showing posts with label health care. Show all posts

A Common Struggle - A Review

In A Common Struggle, Patrick Kennedy tells the story that only he can tell.

There are many memoirs of depression, bipolar, co-morbid substance abuse, families that keep secrets, and recovery. Lately there are memoirs that combine a personal story with a cause: get help, get the right diagnosis, find people who can support you, advocate for better treatment.

Kennedy's unique perspective is the insider's view on the long-term national political work of improving mental health care.

Mental Health Care as our Institutions Fail

There are twelve psychiatrists in Zimbabwe for a population of 16 million people. When Dixon Chibanda, one of the twelve lost a patient to suicide because she could not afford the $15 bus fare to get to her appointment, he did not blame her for breaking the appointment. He came up with another system to deliver mental health care. He trained grandmothers.



Doctors as Priests, Providers and Protectors - Part 4

In Priests, Providers, and Protectors: The Three Faces of  the PhysicianRon Pies proposes a third way to view physicians, not exalting them to the grandiose position of Priest nor demoting them to mere Provider. In the role I call the Protector, the physician's chief obligation is that of  the safeguarding of the patient's physical, emotional, and spiritual well being.

This is a role that acknowledges the patient's autonomy, while recognizing the physician's expertise and the ethical imperative to use that expertise to express foundational principles of the medical field: beneficence, nonmaleficense, and justice. Do good, don't do harm, and I'm not sure what he means by justice, though I have some ideas. The examples below are mine, not his.

Stages of Change for Weight Loss Revisited

How embarrassing.  I clicked on the link to an old post which is getting a lot of hits this week.  It's all about how diets don't work.  And I found four ads about weight loss.

Okay, maybe there is helpful information in those ads.  I hope so, because I put ads on my site to give you resources beyond what my poor brain can contrive. But I don't know, because I get paid by how often somebody looks at them, and the contract says I am not allowed to look at them myself.  I am also not allowed to encourage you to look at them.  That's up to you.  Never mind.

Michael Hill and Antoinette Tuff: Lesson in Crisis Intervention

On August 20, 2013, at the Ronald E. McNair Discovery Learning Center in Decatur, Georgia
                       -- nobody died.

Tuesday, the first school shooting of the new school year

                       -- didn't happen.

It started the way these things start.  A disturbed young man went off his meds.  He decided he would die that day.  He did what others have done who wanted to die.

Suicide By Cop

Empathy in Health Care

Medical schools are using this video in training. Watch it once just to take it in.



Watch it again.  Which one has schizophrenia?  Which one has bipolar? Which one has PTSD?  Which three are on antidepressants?

Which ones are normal?

Doctors' Prejudice Against Mental Illness

One in four people in the United States meet the criteria for a diagnosable mental illness in any given year.  About half will develop a mental illness sometime in their life.  Allen Frances, editor in chief of DSM-IV wants fewer people, only those with the most serious illness, to be diagnosed to spare them the stigma of the diagnosis.  The chief mechanism to achieve his goal would be to change the DSM criteria, so that fewer people qualify.

This series began by introducing Dr. Frances, whose work has inspired it.  It continues to address the topic of stigma, what it means, where it comes from, how to respond.  Last week I defined terms, adding one that expands our frame.  Briefly, Merriam-Webster says that stigma is a mark of shame or discredit; while prejudice is injury or damage resulting from some judgment or action of another in disregard of one's rights.

I think it is important to distinguish between the two.  To do so, one has to clarify the context.  Stigma, when used by somebody who is the object of stigma, is the internalization of somebody else's prejudice. When it is used by somebody else, stigma is a mechanism of diversion that calls on the object of one's own prejudice to bear the responsibility of that prejudice.

So is Allen Frances trying to protect those whom he calls the worried well from being marked with shame or discredit?  Or is he creating a diversion that calls on people who are suffering to bear the responsibility for somebody else's prejudice?

We Are On Our Own


Last week I was part of a group that was confronted with a psychiatric crisis in a visitor.  This group had never been called upon in this way.  But among our ranks we had enough experience of psychiatric crisis that:


1) We were determined we would help a stranger; and
2) We knew how to do it.

Part of the story was that inevitable series of telephone calls to offices in 24 hour institutions that were closed.  When flesh and blood was finally located, the response was rude, ineffective and dismissive.

When I debriefed with my therapist, she expected my frustration at calls for help that did not yield help.  That is one of my therapy themes -- a cognitive schema, as a former cognitive therapist called it.  I surprised my new therapist and surprised myself with my response.  No, I didn't expect help.  We are on our own.

Elections and Mental Health

Full disclosure: I am a Christian.  Every baptism I attend, I renew my vow to follow and obey Jesus Christ as my Lord and Savior.  When I was ordained a priest, I made another vow, to pattern my life in accordance with the teachings of Christ.  So that I don't just make it up as I go along, I also vowed to be diligent in the reading and study of the Holy Scriptures.

I'm telling you -- I'm serious about this.

Just so you understand -- that means I am a Christian first, an American second.

When I vote, my faith determines my vote.

In my reading of the Holy Scriptures -- and I read it a lot, and I read the whole thing, and keep reading it to catch things I missed the first and second and twentieth time round -- it is very clear.  According to Jesus and the prophets, a nation will be judged not by the private morality of its citizens, but on how the nation itself treats the most vulnerable in its midst.

When I vote, I am voting for policies that determine how my nation will be judged, because I believe this nation will be judged.  Since this is a democracy, as a citizen, I also bear some responsibility for what happens in this nation, and expect to share in its judgment.  So I am voting for people whose first priorities will be the hungry, thirsty, alien, poor, sick and those in prison.  Because those are the priorities on which we will be judged.  Matthew 25.  Got that?

So I am voting for mental health.  We throw around a lot of words, but behind these words are real people.  I know some of them.  Even if I didn't. I am commanded, by somebody I have vowed to obey, to do for them what I would have done for me.

Medicaid, veterans, parity, research, access to health care, including sufficient professionals to provide mental health services -- there is a lot at stake in this election.  Follow the link to NAMI's What's at Stake in the 2012 elections? for the details.  Then decide who you think has the same priorities as Jesus and the prophets.  I am not assuming anything here, just telling you where I stand.  Maybe you share these priorities, maybe you don't.  But figure it out.

And be honest about it.

Then go vote yourself.

clip art from Microsoft.com
icon of Christ Pantokrator, 6th c. St. Catherine's Monastery, Mount Sinai, in public domain

Those Who Have Eyes, Let Them See

Yes, I said I was on sabbatical.  But I do have to write.  Like, I do have to breathe.  My facebook page this morning, somebody posted an Ernest Hemingway quote, There is nothing to writing.  All you do is sit down at a typewriter and bleed.  I have learned there is more than one way to bleed.  Teresa of Avila's stigmata, by the way, were interior.  Mine (writing) seems better than other alternatives.

So yes, I am on sabbatical.  That means I don't have to post.  I might anyway.  Oh well.

NAMI National Convention 2012

It started with Shepherd.  He stood straight tall.  Life has taken a lot out of him, including a lot of teeth.  But he stood straight tall.  I remember him as a black man, with piercing light blue eyes.  I know that's possible, a black man with blue eyes.  Maybe it isn't true in this case.  My brain really isn't that dependable anymore.  But the piercing part is the most important.  I am so glad I wasn't afraid to look in his eyes.

The Stages of Change and Weight Loss



Continuing the thread from last week, the average person in the US dies sooner than the average person in forty-nine other nations of the world.  Our higher death rates are linked to our astounding rates of overweight and obesity.  People with severe mental illness die even earlier, 15-25 years earlier.  We have the same life span as the people of Sudan.  The same things kill us as kill everybody else, heart disease, stroke, diabetes, cancer.  They just kill us sooner, because even more of us are overweight and obese.

Side bar: I have growing difficulty using the term mental illness, because I think the term leads to an artificial bifurcation of mental and physical illness.  The weight issue is a case in point.  Most psychiatrists accept the biological model of mental illness, that our diseases are brain diseases.  Nevertheless, most consider the physical aspects as outside their purview.  As a consequence, the part of our disease that is going to kill us does not get treatment.

Weight issues are a case in point.  Psychiatrists hand us prescriptions for medications that cause ballooning weight gain and off the chart cholesterol levels along with the pro forma reminder that we won't gain weight if we don't eat more than we expend in energy.  So all we have to do is eat less and exercise more.

This kind of help doesn't help anybody, regardless of mental status.  Here, as in any other aspect of our recovery, we are on our own.

Weight Loss Programs - Hah!

The temptation is to buy the promises of the commercials that flood the airwaves each New Year.  Here is the deal.  These promises are less verifiable than the ethically-compromised promises of your medications.  But what studies that have been done indicate a relapse rate of at least 50% weight regained within a year or two.

Bottom line, diets don't work.  You have to change your life.  And to change your life, you have to change your brain.

Luckily, you can change your brain.  You just have to understand how.  You have to take the time that it takes.  But you can change your brain.

++++++++++++++++

From Thursday, June 30, 2011 and edited a bit: 

Habit and the Stages of Change



I have been writing for several weeks now [June, 2010] about this mass of electrical activity inside our brains, dendrites and nerve endings, meeting at synapses, passing their spark from one neuron to the next, creating -- what?  A wink, a whisper, a sensation, the next big brainstorm.

Most of these connections could be called, in the widest sense, habits.  By habits, I mean that pathways get used over and over, form patterns, become familiar, channel us to certain outcomes.  Most bypass the frontal cortex, requiring no thought.  Like breathing, smelling, salivating at the cinnamon.
 
Most of the remainder are still automatic.  But with effort, they can be brought to consciousness where the frontal cortex could interfere, and a decision made.  Like blinking.  Or picking up the cookie somebody brought to the meeting.

What if you don't want to pick up the cookie?  Okay, you really do want to pick up the cookie.  What if you want to not pick up the cookie anyway? 

How Do You Change A Habit?



You're gonna take more than one step.

Last week, I put some numbers out there, the Wahls diet.  Nine cups a day of vegetables and fruits.  I broke it down for you: 3 cups leafy greens, 3 cups cruciferous veggies, 3 cups intensely colored.

This food plan helped Dr. Terry Wahls reverse her secondary progressive MS and get up out of her wheelchair.  It could help you reduce your symptoms of heart disease, lung disease, asthma, hypertension, depression, obesity, bipolar disorder, diabetes, Alzheimer's or Parkinson's.

If you have, or are tending toward any of these chronic diseases, you have already heard your doctor/mother/spouse tell you that you need to improve your diet.  Dr. Wahl's book, Minding My Mitochondria tells you just how much and why. 

Nine cups a day of vegetables and fruits:

3 cups leafy greens
3 cups cruciferous veggies
3 cups intensely colored

Stages Of Change 

So there is your canyon.  Here are the steps, more than one.  Several, in fact.  The steps are known as the Stages of Change.




The Stages of Change model appears all over the place lately.  This article from the journal American Family Physician uses the Stages to help physicians help their patients, something more effective than Just do it.  A Youtube search yields results for addiction recovery counselors, life coach trainers, weight loss clinics.

Different sites number the stages differently.  Some say Precontemplation is Stage 0.  Some give Relapse its own number.  Some add Transcendence, whatever that is -- said the priest who gets cynical when quasi-religious language gets used for the purposes of self-improvement.  Whatever we are supposed to transcend, evidently it is not our desire to improve ourselves. -- But I digress.

I like this site, which is the source of the graphic above, even if the author does use that word Transcendence that made me twitchy there for a minute before I got back on track.  It works through the stages from the perspective of the person who is making the change, not the person who wants somebody else to change. 

Crossing Canyons/Building Bridges In My Brain 

Dr. Wahls calls it a diet.  I don't diet.  Who wants to DIE-t?   Each chocolate chip cookie left on the plate represents a little death.  A diet is a temporary interruption.  When it ends, you go back to your life.  But there is nothing temporary about the nutritional needs of my mitochondria, without whom there would be no life.

I'm into changing my brain.  In that mass of electrical wiring, some potentially healthy pathways are blocked by the detritus of dead dendrites.  Other destructive pathways are carved into canyons of well-worn automatic responses. 

Changing my brain will take time.  It is taking decades.  It will take at least another blogpost. 

And The Word Became Flesh 

Question: What do the Stages of Change have to do with Prozac Monologues? 

Answer: Words.  The Stages of Change use language to shape the brain.


Language is one kind of pathway from neuron to neuron.  It connects electrical impulses from the autonomic systems, the olfactory nerve, the amygdala, through the hippocampus (memory and emotion) and the anterior cingulate cortex (pattern seeking) and into the frontal cortex (conscious thought).


Language is how all this electrical activity gets turned into meaning.  It is where the brain and the mind become one. 

The Stages of Change include a process of changing our patterned thinking about food.  And thinking is how we move from one stage to the next. 

Dr. Wahls writes about synergy, how exercise and diet work together to heal her myelin and reduce the symptoms of her MS.  I'm thinking the same process works for changing habits, particularly food habits.  Each new behavior reinforces the preceding thought that moved you to the new stage.  That repeated behavior patterns the thought that will move you to the next stage. 

Meanwhile, what you are eating while you are trying to make any change matters.  Your mitochondria need the right materials to build the dendrites that form the new pathways.  Like lunch for the road crew.

So don't try to skip stages.  And don't skip broccoli.

One of these days I will write my own food autobiography, my trip through these stages.

+++++++++++++++++++++

Back to New Year's, 2012 

Pre-Contemplation 

The good news is, you have already moved past Stage One, Pre-Contemplation.  I presume you have moved past Stage One.  Pre-Contemplation is when you don't really think you have a problem. And why would you still be reading this post if it wasn't your problem?  So you have already made progress! 

Contemplation 

But don't try to jump that canyon.  Don't go from I have a problem to New Year's Resolution: no more cookies.  It is January 3rd, and that resolution is probably already in the toilet.  We are not talking about the New Year here.  We are talking about your life.

One step at a time.  Make a list.  Make it as long as you can.  Why do you want to change?  What difference would this change make in your life?  Go deep here.  Screw those little graphics with the magically shrinking ladies that show up in your Facebook sidebar.  What is at stake for you?  This is no longer a game.

Read that list every day.  That will help the re-patterning process.

That is enough for this week.  You have homework to do.  I have my life to get back to.

Happy New Year!  Happy Long Life!


No New Year's Resolutions - Change Your Life December 29, 2011 -- Overweight is a major health issue, the largest contributing factor to early death for people who have mental illness.
My Food Autobiography and the Stages of Change March 8, 2012 -- Pre-contemplation and contemplation.
Changing Food Habits -- Contemplation and Preparation March 15, 2012 -- Reviews The End of Overeating by David Kessler and introduces the brain science of the sugar/salt/fat trifecta.
Dopamine -- Can't Live Without It March 23, 2012 -- The brain science behind habit formation and an experiment to try.
Relapse/Maintenance -- Stages of Change May 24, 2012 -- Review and finishing up the series.



photo of salmon in Ketchikan Creek by Wknight94 and used under the terms of the GNU Free Documentation License 
photo of Women Working at a Bell Telephone Switchboard from the National Archives and Records Administration and in the public domain
photos of Hatherton Canal in Staffordshire by Roger Kidd, Coal Creek Falls by Walter Siegmund, Glen Canyon by Sascha BrückJeff Kubina used under the Creative Commons Attribution-Share Alike 3.0 Unported license.
Stages of Change graphic was created by Todd Atkins, who placed it in the public domain

No New Year's Resolutions - Change Your Life

Weight Loss For Sale

It's all done with computers.  Automatically, 12:01 AM !2/25/2011, the Target ads disappear from television screens and Facebook sidebars, the Jennie Craig ads go up.  Next morning, the Lifestyle section of the newspaper switches from appetizer and eggnog recipes to yogurt and exercise programs.  After months of selling excess, now it is time to sell restraint.

How did it work for you last year?  It worked really well for the media.  How did it work for you?

You can't buy change.  And sure as one set of ads replaces another at 12:01 AM, you cannot lose weight by buying a weight loss program.  You yourself, not just your body but even your brain has to change.

Meanwhile, Excess Weight is Killing Us In The US 

How many times have you heard that the US has the best health care in the world?  I won't dwell on that nonsense.  But clearly we do not have the best health.  Out of 221 nations, the US ranks #50 in life span.  That puts us at the 77%, a low C at St. John's Parochial School where I went, maybe a B in public school, grading on the curve.  So to speak.  Meanwhile, compare Jordan at #29, South Korea at #41 and Bosnia/Herzegovina at #45.

Those numbers come from the CIA's World Factbook, where they say Life expectancy at birth is also a measure of overall quality of life in a country and summarizes the mortality at all ages. It can also be thought of as indicating the potential return on investment in human capital.  In other words, a low C, B if grading on the curve, is the quality of life you get healthwise if you were born in the US, the country with the best health care in the world.  Who came up with that claim, anyway?

In a different but related index, the World Health Organization charts BMI, Body/Mass Index, a measure of weight in relation to height.  The US ranks #54 out of the 60 nations for which it has data, for percentage of people with normal weight, neither too heavy nor too thin.  That puts us at the 10th percentile, an F-, whether grading on the curve or no curve.  Only 36% of US citizens have a healthy weight. 

And the cost?  Cardiovascular disorders (high cholesterol, high blood pressure, heart attacks, stroke), metabolic disorders (diabetes) cancer (breast, cervical, uterine, prostate, colon, kidney...), arthritis, sleep apnea... That is the short list of health complications and loss of life associated with excess weight.  I will let you come up with your own list for what you have less of on account of what you have more of...

Excess Weight Is Slaughtering Those With Mental Illness

Meanwhile, back in Prozac Monologues Land, people with severe mental illness beat out the rest of the population in the race to break the scale.  Clinical studies have reported rates of obesity in patients with schizophrenia or bipolar disorder of up to 60%.  That compares to 34% in the US population, a number that already staggers the imagination as it is.

The reasons for the difference are many:

  • The most common medications for these disorders, lithium and antipsychotics, especially the new ones are notorious for weight gain.  It is surmised that the weight gain comes from disrupting both metabolism and the neurotransmitters that regulate appetite.
  • But medication-naive patients also have a higher risk for overweight and obesity.  The negative symptoms of schizophrenia and the depression-part of bipolar (lack of interest, inability to feel pleasure) lead to more sedentary lifestyles and more weight gain. 
  • From the Damned-If-You-Do-And-Damned-If-You-Don't Department, the medications for schizophrenia and bipolar mostly reduce the positive symptoms (delusions in the case of schizophrenia, high energy in bipolar - the symptoms that scare your families and your care providers who write the prescriptions).  They tend to increase the negative symptoms (thereby relieving the anxieties of your families and your care providers who write the prescriptions), providing that synergistic effect that nails you to the sofa.
  • There may be pre-existing genetic connections between what is considered two different conditions, overweight and mental illness.  The DSM defines mental illnesses on the basis of certain symptoms.  It does not describe what is actually going on inside the body to produce the symptoms.  Metabolism, energy levels and regulation of appetite are all controlled by parts of the brain, often with genetic predispositions.  While these are included in the symptom lists for mental illness, they are not the defining symptoms targeted by treatment.

Add it all up, what do you get?

People with severe mental illness die 15-25 years before the US national average.  Rwanda beats us.  We have the life span of people born in Sudan.

What do we die of?  No, suicide is not a significant factor in this equation.  We die of cardiovascular disorders, metabolic disorders and cancer.  Just like everybody else who weighs what we weigh.

What Are Our Doctors Doing To Save Our Lives?

Our doctors are doing their best to prevent symptoms of our mental disorders, the scary symptoms, hallucinations, delusions, too much energy combined with poor judgment that get us into trouble with the law.

They are not doing anything about what is going to kill us.

Well, okay, they are psychiatrists; they treat psychiatric disorders.  They are not general practitioners nor weight-loss specialists.

So here are two more reasons embedded in the US health care system that contribute to our lethal obesity.
  • Notwithstanding that excess weight is a symptom of our disease and also a side effect of treatment, our psychiatrists consider our weight issues to be none of their business.  Never mind how significant this unaddressed health issue is when it comes to whether we are even willing to take the meds they prescribe.
  • People who have mental illness are less likely to have health insurance.  We are less likely ever to see any doctor other than the one at the community mental health center who is treating our mental illness.  Not to mention access to weight loss programs.  Not to mention money for fresh foods or exercise programs.
The upshot: what are our doctors doing to save our lives?  Precious little.

Okay, having said that, some doctors are doing more.  My doctor listened when I told her my family medical history, that everybody in my family dies of heart disease, that my younger brothers had heart attacks at age 55 and age 29.  When I said I would not take Seroquel unless I was psychotic, she paid attention.  She tried to find meds that are weight neutral that I could tolerate.

But from the things I have written lately about my current psychiatrist, my readers who have real life experience with psychiatrists know that she represents a minority in the profession.

We Have To Lose Weight Anyway

What most patients get from most doctors is the pro forma reminder that we won't gain weight if we don't eat more than we expend in energy.  So all we have to do is eat less and exercise more.

There.  Their responsibility has been discharged.

Here, as in almost every area of our recovery, we are on our own.  Recovery is up to us.

We have to lose weight anyway.  We have to.  It's our hearts, our blood vessels, our pancreases, our knees and hips, our brains, our lives, 15-25 years worth of our lives that are at stake.

 
We will be swimming upstream, up against the forces of whatever is going on in our genes, our dopamine channels, our pineal glands, our medications, our lack of health care, our poverty.  So?  Salmon swim upstream all the time.

Salmon are programmed to swim upstream.  We have to program ourselves.

A New Year's resolution will not change the program.  Did it last year?

So here comes a series on reprogramming our brains.  It is a series, because we have to take it step at a time.

Word of encouragement: If you made it to the bottom of this post, you are probably already past the first step.

Who knows, maybe this series will carry us past the New Year's/Jennie Craig/NutraSystem et al season and up to the Super Bowl/Bud/Doritos season!

Note added, 01/02/13 -- The following are links to the rest of this series:

The Stages of Change and Weight Loss January 3, 2012 -- How do you change a habit?
My Food Autobiography and the Stages of Change March 8, 2012 -- Pre-contemplation and contemplation.
Changing Food Habits -- Contemplation and Preparation March 15, 2012 -- Reviews The End of Overeating by David Kessler and introduces the brain science of the sugar/salt/fat trifecta.
Dopamine -- Can't Live Without It March 23, 2012 -- The brain science behind habit formation and an experiment to try.
Relapse/Maintenance -- Stages of Change May 24, 2012 -- Review and finishing up the series.

clipart and photo of school paper from Microsoft
photo "Angry Father" by Akapl616.  Permission is granted to copy under the terms of the GNU Free Documentation License
photo of salmon in Ketchikan Creek by Wknight94 and used under the terms of the GNU Free Documentation License

Mental Illness Awareness Week - Because We Are Really Good at Delusional


Imagine this -- Somebody from NAMI attends one of those campaign events and gets to the microphone.  Intending to ask about the candidate's views on funding for community mental health, this poor parent begins with a statement: 

People with severe mental illness die on average twenty-five years before everybody else.  They have the expected lifespan of Somalia. 

Nowadays the crowd will cheer.  But that particular youtube wouldn't go viral.


I am jaded about this Mental Illness Awareness thing.  It will not be subjected to any Best Practices evaluation.  NAMI and the pharmaceutical industry have been making us more aware of mental illness for decades now.  The numbers on prejudice have not budged.  They have not budged.

That negativity -- does it mean I am currently displaying symptoms or that I have done my research?  Both, actually.

I'll cop to the irony here.  I myself was a speaker at one of those Mental Illness Awareness Week events once, held on a Sunday night in a not-much-traveled portion of a university campus.

It was very moving, the candles and all that.  And it did raise awareness, in the sense that it made those of us who were there, people with mental illness and those who love us aware that we are not alone.  But did it increase funding for research and treatment?  Did it reduce prejudice?  I don't think so.

Let me answer that another way.  Did it increase funding for research and treatment?  Did it reduce prejudice?

Nope.

So symptoms, research, irony and all, my contribution to Mental Illness Awareness Week is a repost of what I think we ought to be doing this week.  And next.  And next. 

From Friday, March 11, 2011:

Ignore/Laugh/Fight/ -- Mental Health Advocacy That Wins


If they don't want to employ you, if they are afraid of you, if there are four times as many of you in jail as in the hospital, then it's not just stigma.  It is prejudice and it is oppression.
The twentieth century offered a whole degree program in prejudice and oppression.  Others have made progress against what beat them down.  Though we are now stalled and falling behind, we can move forward when we adopt their methods.

The Map to Liberation

Mahatma Gandhi was not the first freedom fighter.  But he is the great theoretician.  He gave us the map.


First they ignore you.
Then they laugh at you.
Then they fight you. 
Then you win. 

Four simple steps.  The good news -- we have already taken the first.  Got that one down pat.

Liberation 101: 

We are in charge of the map.  The oppressor doesn't decide that oppression will end.  It endures until the oppressed decide that it will end.

What we have to do is provoke the next step.

Then they laugh at you.

Well, that's where we are stuck, because we are unwilling to be laughed at.  Last month's NAMI meeting was about Iowa's upcoming budget cuts.  Somebody said, When we complain, they say we are crazy.  I think she is a therapist.  She has that therapist look, if you know what I mean.

Therapists say the funniest things.  When we complain about how we are treated, they say we are crazy.

But we are crazy!  We start off ahead of all the other liberation movements that had to get crazy to take it to Gandhi's next step.

Think Martin Luther King.  Think Nelson Mandela.  Freedom?  People called them communists.  Either that or just plain nuts. 

Like these other movements, we have to find a spiritual taproot deep enough that we can endure being laughed at.  Just like the tree, standing by the water... 

The spiritual work will be impossible if we expect our care providers to lead.  They get twitchy if we talk spirituality.  I will address that work another time.  Right now I will sketch out how we break beyond First they ignore you, and move to Then they laugh at you.

What that means more precisely is, we have to do things to make people think we are nuts.  Like, DEMAND that we receive funding for research and treatment, DEMAND that we have the same access to health care as anybody else, DEMAND that we receive our health care in health care facilities, not in jails.

It's all about budget cuts right now.  Corporate tax cuts -- that's a given.  Corporations spent good money for our current crop of legislators, and they expect a return on investment.

So who will pay for these tax cuts, the people with mental retardation or the people with mental illness?  The Iowa State legislature has a committee that has asked us to decide.  Well, isn't that special.

We have to DEMAND that they change the rules of this game.  We have to REFUSE to play Survivor.  We have to refuse LOUDLY.


How?  African Americans sat down.  That is when they moved off Step One, when they REFUSED to be ignored any more.

So how about we lie down?


Lie In/Die In

Picture this.  The next Loonie Lobby Day at the state legislature, we don't get all showered and neatly normaled up and go have sincere conversations with our legislators who are really sympathetic (their brother has depression, so they know what we are up against, but their hands are tied by that pesky deficit...)

Instead, we stand in the rotunda and read off the names of their constituents who have committed suicide.  Each time a name is read, somebody falls down.  They have to step over our bodies to get out of the building.

Mental Health "Parity"
 
The Mental Health Parity and Addiction Equity Act would be better called the Swiss Cheese Mental Health Act.

1) Only large employers are affected.

2) If they can demonstrate it causes them financial hardship, they can get an exemption.

3) Parity is a laugh anyhow, if reimbursement rates are so low you can't find a provider who accepts your insurance.

4) The provisions of even this piss poor legislation that address reimbursement rates are now the top of the list on Congress's chopping block.

So off we head to Washington.  There are 13,000,000 million of us with serious mental illnesses in the US, including 5.7 million with bipolar, 2.4 million with schizophrenia and 7.7 million with PTSD.  The numbers add up to more than 13,000,000, because some of us get to double dip.  Piece of cake to pull together 34,000 to do a die-in around the steps of Congress, representing one year's worth of the deaths by suicide in the US.  We will drape American flags over the bodies of the vets.

Yes, we are dying out here.  Let them step over us.

How nuts are we to think we can turn around this systemic discrimination?  In this political climate?

Progress Report

Remember, When we complain about how we are treated, they say we are crazyBy now some of my readers seriously want me to reconsider Seroquel.  Others -- if you are still reading, your doc wants you to up your dose.  This means we are making progress.

At some point, laughter becomes a cover for scared.  Then it's time for the next step.

Then they fight you.

Remember, this is our map.  We are the ones who push it forward.  Nobody else will.  And if I am scaring you, look at it this way.  If we aren't scared already, we'd have to be crazy.

Until we change our advocacy, we will continue to lose psychiatrists.  We currently have less than half the psychiatrists we need to provide a even a shoddy level of token med checks.  In Iowa, we have one fourth.  While demand is going up (think Iraq, think Afghanistan), supply is going down, as retiring psychiatrists are not replaced by new doctors.  Why go that far in debt to get through med school and then choose a specialty with the lowest pay scale on the block?

Until we change our advocacy, we will continue to lose community mental health centers.  Remember community mental health centers?  The places we were supposed to go when they kicked us out of the hospital?  They are disappearing already.  Here are the Kansas numbers.  You can find the same story for any state you google.

Until we change our advocacy, we will lose what parity was promised.  Again, all employers have to do to avoid it is demonstrate that it costs them money to provide it.

Until we change our advocacy, we will lose even the programs that jails now provide.  Why should criminals be coddled?

Desperate Times Call For Futile Gestures

What were we thinking?  That public demonstrations would make a difference to cold hard facts?  Were we nuts?  (By the way, what have we been thinking, that talking would make a difference?)




After the strategies designed for Then they laugh at you prove futile, we up the ante.  In place of our bodies, we substitute urns full of ashes and dump them on the floor of the assembly halls.

In 1987 AIDS activists entered the New York Stock Exchange.  Seven people unobtrusively chained themselves and a banner to the rail overlooking the trading floor.  At the opening bell they unfurled their banner and blew fog horns.  They drowned out the opening bell, and prevented traders from trading, while they brought national attention to their demand that pharmaceutical companies stop profiteering at the cost of their lives.

Wall Street is our audience, too -- all the businesses that insure some of their employees but not us, all the health care companies that pay reasonable reimbursement to some doctors but not ours.  How about we bring ambulance sirens? 

A Day Without Mental Health Care 

Next we head to Main Street.

The 2004 film A Day Without A Mexican imagined what would happen if one day everybody in the US from Mexico, Guatemala, Honduras, Nicaragua, et al disappeared.  Economic havoc, that's what.  A few years later, the movie inspired a political demonstration.  Workers stayed home for a day.  In some places, restaurants simply closed for the day, unable to serve their customers.

So last week the Wall Street Journal reported a survey by Workplace Options.  The survey discovered that 41% of workers polled had taken 4-9 days off work in the previous year to care for their own, their friends', their coworkers' or family members' mental health issue.  Half work in offices with no benefits, support or services to deal with mental health issues.

They think they can't afford to provide services?  They haven't a clue how much it already costs them not to. 

There you have it, a National Day Without Mental Health Care.  Everybody who has a mental illness or loves somebody who does -- stay home.  I'm thinking Monday -- to make that moon connection, and maybe even disrupt Monday Night Football?

Going To Jail

At this point, we are littering, destroying property and generally disturbing the peace.  We are going to jail.

Everybody on a three-month wait list for an intake interview,

Everybody on a two-year wait list for the judicial review of an SSDI application,

Everybody on a four-year wait list for sheltered housing,

Everybody who had been doing okay, but stopped taking meds when the day program closed,

Everybody who can't afford the copay for that third tier prescription anyway,

Everybody who doesn't have health insurance at all,

Everybody who is homeless,

Go downtown and set a trash can on fire.

We Need Some Coordination Here

No, not everybody.  Jail is not a good place for people with OCD, PTSD, nor Borderline.  You all, your part is to run right down to the courthouse, legal brief in hand, to make sure the police department fulfills its obligation to get the rest of us our meds.

Prejudice And Oppression -- Some Observations

This post has been about fighting oppression, the institutional arrangements that support an unjust system.  Oppression is weighty.  It is fierce.  It does not respond to reason.  Power yields only to power.  The strategies and actions I have described are the power of anger that has been organized.

Our families and our care providers are just as scared as everybody else of our anger.  So they will not help us here.  They want to address prejudice, not oppression. 

Prejudice is the irrational thoughts and feelings of individuals.  Well, prejudice also needs to be addressed.  There is work enough for everybody.  Think of differential diagnoses as differential skill sets for the differential tasks of freedom-fighting.

That's coming next week...

banner from nami.org
image of prison bars from microsoft
photo of Mahatma Gandhi in public domain 
flair from facebook
forest photo by Maylene Thyssen used under the GNU Free Documentation license
sit in at Walgreen's in Nashville, Tennesee, March 25, 1960, in public domain
photo of die in casualties by Brendan Themes and used under the Creative Commons Attribution 2.0 Generic license
fist graphic in public domain

Jared Loughner -- It Doesn't Have To Work This Way

The man who wants to put Jared Loughner to death is concerned for his health.

The United States attorney for Arizona, Dennis K. Burke, wrote to the Ninth Circuit Court of Appeals that despite being under suicide watch, Loughner’s unmedicated behavior is endangering him. 

It has been determined that Jared suffers from schizophrenia, and is unable to participate in his defense against the 49 charges stemming from the Arizona shootings that left six people dead and thirteen wounded.  Now somebody wants to get this desperately sick young man some help.  Because if he can't stand trial, then he can't be prosecuted, convicted and executed.

Jared's attorneys think it is not in his interest, under the circumstances, to take Risperidone, a standard antipsychotic medication given to people who think that somebody is trying to kill them.  It might have been in his interest earlier on.  But the community college that noticed his bizarre behavior, including the speech salad that is the dead giveaway of schizophrenia, simply expelled him.

The Ninth Circuit Court of Appeals agreed with the prosecution, and Jared is now being forcibly medicated.

I intended to return to my NAMI Convention reporting this week.  But wow.  This story lands on my laptop, the very essence of the Prozac Monologues spirit.

There are so many layers of meaning here.  I don't think I am up to the task of analysis.  Instead I will tell another story, the original sequel to last week's rerun.

This is how a Christian community responded to the violent act of a mentally ill man. -- as they understand what it means to be Christian.  From January 21, 2010 --

The Miracle of Gheel

It was seventh century Ireland.  The Queen died.  King Damon's grief was so deep that it moved into depression and then psychosis.  He thought his daughter Dymphna was his queen.  Rather than submit to his advances, Dymphna fled to Belgium, to the town of Gheel.  But her father followed.  When she again rebuffed him, he killed her, cut off her head.  Dymphna was buried in the local church.

Six centuries later, her coffin was found during renovations.  Signs on the coffin demonstrated her holiness.  She began to be venerated.  Cures of the sick were attributed to her.  She was canonized in 1247 as the patron saint of the mentally ill.

Okay, here the one last bit of unrecovered Catholic in me demands to be heard, to note Rome's fascination with girls who prefer death to rape.  Even as a nine year old, that troubled me.

Abandoning The Mentally Ill -- Or Not

Moving on.  People came to Gheel for healing.  Many brought family members who were mentally ill.  Sometimes they left them there.  The priest housed these abandoned ones next to the church.  When the job of caring for them became too much for him, townspeople started bringing in food.  They built a hospital in the 14th century.  When it was full, the real miracle of St. Dymphna occurred, or rather, began.  Townspeople took some of the patients into their own homes, reserving the hospital only for those most ill.

All across Europe, people with mental illness were thought to be possessed.  They were exorcised, tortured and burned at the stake.  But not in Gheel.

Imagine it!  A psychotic foreigner commits a terrible deed.  But the townspeople do not close the borders.  No, they open their homes.

And they still do.  Through plagues, wars, revolutions, recessions, depressions, during the Napoleonic "Reform," when all the mentally ill people in the country were ordered into one big hospital, during the Nazi occupation, with their "final solution" for mental illness, during the latest reform when the U.S. of A. was/is dumping all our mentally ill people out of the hospitals, onto our streets and into our jails, the people of Gheel developed and continue genuine community-based mental health care.

What Community Care Looks Like

Today, there are 700 foster homes for 1000 people with mental illness.  A person will enter the hospital for evaluation and stabilization.  S/he meets the psychiatrist, psychologist, nurse, social worker and family practitioner who staff one of the five neighborhood community mental health centers.  Each of these staff people spends half a day each week in the hospital, so everybody gets to know everybody.  The potential foster family and patient meet at the hospital, then over tea at home, then over a meal, then over a weekend before placement.  Outpatient care, medication monitoring and therapy continue at the neighborhood center.  If possible, the biological family participates in the treatment plan.

Once part of the family, the person shares in family activities, chores and church.  The church doesn't have special bible studies, services or programs for the mentally ill.  They are fully integrated, regular readers, members of the choir, ushers, etc.

But What About Relapse?

What if the person's symptoms flair?  We say s/he is having a bad day.  Because the person lives in a family, not on the streets or alone in an apartment, problems are caught and addressed early, not after getting fired or evicted or arrested or in a bloody mess.  If needed, s/he can go back to the hospital for a while.  In fact, the hospital is not the place of last resort.  When the foster family has to go out of town, say, for a funeral, the person can stay at the hospital.  There is continuity of care.  There is care.

Three years ago I wrote a chapter for Deep Calling called, If This Were Cancer.  I detailed all the ways that hospice patients receive the support of others, and that people who have suicidal depression do not.  If this were cancer, there would be casseroles...  I imagined the total collapse of care for the mentally ill, under the weight of our crazy health care system.  In fact, it's happening as I write.

I imagined that the Church would step in to meet a desperate need, to create hospice for the mentally ill, as the Church originally created hospice and hospitals.  I claimed that the Church has the resources to organize for such care on a local basis.  It has the faith to imagine such a thing, the love to cast out fear, and the values to demand it.  I will have to rewrite that chapter.  I didn't know it had already been/is already being done.

I am ever so grateful to Janet, whose last name I don't remember, who gave me Souls in the Hands of a Tender God: Stories of the Search for Healing and Home on the Streets by Craig Rennebohm, the source of this story. 

Lord God, Who has graciously chosen Saint Dymphna to be the patroness of those afflicted with mental and nervous disorders, and has caused her to be an inspiration and a symbol of charity to the thousands who invoke her intercession, grant through the prayers of this pure, youthful martyr, relief and consolation to all who suffer from these disturbances, and especially to those for whom we now pray. (Here mention those for whom you wish to pray.)

We beg You to accept and grant the prayers of Saint Dymphna on our behalf. Grant to those we have particularly recommended patience in their sufferings and resignation to Your Divine Will. Fill them with hope and, if it is according to Your Divine Plan, bestow upon them the cure they so earnestly desire. Grant this through Christ Our Lord. Amen.
 


... I think maybe Jared could use our prayers, too.

photo of Risperidone by V1ND3M14TR1X and used under the terms of the GNU Free Documentation License
image of Dymphna in the public domain
A Kitchen Interior by Joachim Beuckelaer, 16th c., in the public domain
book cover from amazon.com

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