Uptown Bill's - One Candle

Okay, let me be very clear.  And let you not perversely misunderstand.  Justice beats charity any day.  The current tax structure of the United States is unjust.  At least, that is what Jesus and the Prophets would say.  Charitable people can't make up for the size of this injustice, and shouldn't have to try.  The fixed notion that we can is diagnosable.

Fair Taxes

Warren Buffett was curious and did some research.  Last year Buffett's taxable income was roughly $40,800,000.  That's after deductions.  His taxes were 17.4% of that amount.  Every other person in his office paid somewhere between 33% and 41% of their taxable income, an average of 36%.  He doesn't think that's fair.

Nobody thinks that is fair.  In fact, a lot of rich people and the Republican Congress think he paid too much.  Nevertheless, there are indeed other rich people who agree with Buffett, that they get more than most out of government services, the type of services that help them accumulate even more, and they should pay more.

I have enough to rant about without taking on tax policy.  So let me focus on the implications of our current tax policy for mental health policy.

What Jesus And Amos And Muhammed Said 

Last week I told you it is time to step up, join with others, and do what the government and the people who own the government do not have the political will to do.  Feed the hungry.  Welcome the stranger.  Visit the sick and in prison.  Those phrases come from the Christian Scriptures, Matthew 25, but were spoken by a Jew who got his religion from a long line of Jewish prophets.  We can round out the authorities of monotheism with the Muslim requirement to give alms.  For you non-theists, you have to be your own authority.

I'm just saying -- Do it.  Charity is an insufficient substitute for justice.  Do it anyway.  While Facebook and the blogosphere are filling up with calls for justice, people are dying out here.

That is where I left off last week.  This week, the example I promised, one light lit against the darkness, Uptown Bill's.

Bill Sackter

Bill Sackter spent most of his life in a Minnesota state institution, placed there when he was seven, because he was mentally retarded.  He got out when he was 53, when institutions downsized and transferred care to the community.  Only there wasn't a community.  There was one social worker with a case load too large to give Bill adequate help to adjust.

Bill was on the verge of going back to that hellhole, as he called it, when Barry Morrow, a young filmmaker in search of a project met him, befriended him, became his guardian and brought him to Iowa City, Iowa.

Barry worked for Tom Walz, the head of the University of Iowa's sociology department and the kind of idealist that thrived in Iowa city in the 70s and 80s.  Except Tom is a practical man.  And he listens.  And he got Bill the kind of job that Bill could do.  He could make coffee.  He couldn't make change, but he could make coffee.  That was fine, because the social work students who patronized Wild Bill's Coffee Shop could make change for themselves.

Barry made two movies about Bill's life, starring Mickey Rooney, and Bill became a symbol of how people with disabilities can contribute to our common enterprise.

Uptown Bill's

That would have been the end of it, but, like I said, Tom Walz is a practical man.  A practical man with a vision.  When Bill died and Tom retired, Tom helped to create Uptown Bill's, a small mall of businesses owned and operated by people with a variety of disabilities, a book store, a graphics design business, vintage store, furniture repair and refinishing, and yes, Wild Bill's Coffee Shop.

Today Uptown Bill's includes all of the above, plus a music shop, home repair and maintenance business, classes on how to start e-businesses, and programming in the arts.

This is community care that works.  Emphasis on the the works.  I think it works for two reasons:

1) People with disabilities have abilities.  My dog Mazie taught me that we all come with surplus.  To lose one, or even several, leaves us with loads.  Well, we all have things we can and cannot do.  Whether we fit into the economy, whether the community is structured so we can contribute and receive, says more about the community than about us.  For that matter, our labels say more about the way the community is structured and less about us.

That is both obvious and invisible in the public arena.  But some people have eyes to see.  So a place like Uptown Bill's is possible.  People with disabilities can run our own businesses.

2) If you own the business, you don't get laid off when the funding gets cut.

Now after the manner of Hebrew poetry, I said there were two reasons why Uptown Bill's works, and I add a third.

3) There are people who do not carry the label disabled who decide to work in partnership with others who do carry the label.  They don't run the show, but they add their own abilities to the mix.  These people don't have to believe in one sort of tax structure for the United States or another, have one faith perspective or another or none at all.  They just have to want to live in a community that can receive the contributions of every member of it, without regard to labels.

Off The Grid

I write this from Costa Rica.  I live in a little fishing/tourist/beach town with enormous disparities of wealth.  Michael Jordan and Madonna own property in this part of Costa Rica, though I don't think they can see the doorway where that man sleeps from their infinity pools.  I live behind razor wire, in a middle class/working class mixed neighborhood.  Some of my neighbors make do with barbed wire.  And I watch the United States on a trajectory toward the same.  Except there won't be papaya trees growing wild up north.

When I go downtown, I see a mentally ill and homeless person who makes a living by buying a pack of cigarettes and selling them one and two at a time for a profit.  I see people who buy their cigarettes one and two at a time from him.  Because they are a pueblo.

Sure, keep trying to turn the Titanic around.  But do something else, as well.  Our government doesn't work for us.  I think it is time to figure out how to piece together a pueblo, instead, to join with others and do what we can with each other.  One candle, one cigarette at a time.

flair by facebook.com

scales by Johannes Regiomontanus, 1512, in public domain.

image of the prophet Amos by Gustave Doré, 1866, in public domain

book cover by amazon.com

dvd image by amazon.co

photo of razor wire by Helen Keefe and used by permission

photo of cigarette in public domain 

1000 Points of Light Revisited

                              OR

Gosh, We Could Use A Candle Down Here

I wonder if the US has passed the tipping point.  For decades, a thriving middle class fueled the economy and supported our democracy.  In the Bush years we decided to pay for those two wars, um... later, so the super rich could get richer.  During the Obama administration we decided the tax cuts will stay; so the poor, the sick and the elderly will pay for those wars and the tax cuts.  Meanwhile, the middle has shifted.

From Vernellia R. Randall, Professor of Law, The University of Dayton:  [In the last two decades] the gap between the rich and poor in the United States grew at the same pace as the economic growth.  Statistics show that the richest 1 percent of the US citizens own 40 percent of the total property of the country, while 80 percent of US citizens own just 16 percent.
 
Since the 1990s, 40 percent of the increased wealth went into the pockets of the rich minority, while only 1 percent went to the poor majority.

From 1977 to 1999, the after-tax income of the richest 20 percent of American families increased by 43 percent, while that of the poorest 20 percent decreased 9 percent, allowing for inflation.  The actual income of those living on the lowest salaries was even less than 30 years ago.

Businessinsider.com tells the story in graphs for you visual learners.

And here is the way Warren Buffet tells it.

The upshot from the mental health perspective -- states are slashing mental health budgets.

After the Jared Loughner shootings, Arizona talked a lot about the need for better services.  Then it cut $36 million from its mental health budget, or 37%.  Across the nation, the average cut is 8%.  Emergency rooms, jails and homeless shelters take up the slack.

There is a lot of slack.

Home ownership, those 401K's we were supposed to use to replace pensions...  I won't linger here.  I just wonder if this income shift can be turned around.  Mostly I wonder what we will do in this new America, which will look more and more like other countries that have wealth gaps this large and the security budgets to protect the spread.  Mexico comes to mind. 

What We Will Do

We were a decade into the beginning of the shift when in 1989, at his inauguration George H. W. Bush called for 1000 points of light, voluntary organizations across the country to address human need, the homeless, children, persons addicted to whatever substance (including welfare, he said), unwed mothers.

This was the Read my lips: No new taxes guy.  So there was a certain cynicism mixed with his compassion, a rich man calling on the virtues of those with less to take care of those with even less.

It sounds different when the poor themselves say it.  And, of course, Bush was referencing the poor man who said, You are the light of the world... let your light shine before others, so that they may see your good works and give glory to your Father in heaven. (NRSV)  The guy who said that said it to other poor people who were taxed into poverty to pay the salaries of the police state that was just looking for a reason...  In his case, they found one.

The philosophical debate, to what extent should the United States of America accept a common responsibility for the common welfare, is just that, a philosophical debate.  As a political debate, it is pretty much over.  We won't.    Them that's got shall get; them that's not shall lose.  And them that's got have got the government, the means to keep the government, and no intention whatsoever of paying for the benefits they receive from the government (infrastructure, security, subsidies, an educated - more or less - work force, international trade agreements, subsidies.)

So we are back to those 1000 points of light, or rather, to You are the light of the world.  For what it's worth, the only light there is going to be.

Those voluntary organizations that Bush Sr. was counting on to pick up the tab never had the resources to do it.  And they have less now.  Voluntary organizations have been contracting since 1964.

This is candle in the wind time, folks.  But it's time to sign up.  Why?  Because it's getting dark down here, and you are the last flame.

It is time for secular humanists to get over their sense of intellectual superiority.  It is time for the spiritual but not religious to get over their allergy to accountability.  It is time for religious people of whatever stripe to get over their delusional straining for influence.  The only shot we have is to do it together.

Somebody has to do something, and it's just incredibly pathetic that it has to be us. -- Jerry Garcia.

But there it is.  Those of us who have lost our jobs, our pensions, our insurance, our health, or are bracing for the blow have to get it together and do it ourselves, have to organize, to feed the hungry, welcome the stranger, visit the sick and in prison -- whatever kind, compassionate, fair, sensible thing it is.

Next week, an example.

book jacket for The World is Flat by Thomas Friedman from amazon.com
photo of emergency room by Thierry Geoffroy and used under the Creative Commons Attribution-Share Alike 3.0 Unported license
print of Lazarus and the Rich Man be Print by Gustave Doré, 1891, in public domain
photo of candles by Nevit Dilmen,  Permission granted to copy under the terms of the GNU Free Documentation License  

NAMI Convention and the Persistence of DNA

The second of my NAMI Convention posts is about opening my heart to the other side.

History Of NAMI

Even if its origins were to be forgotten, a system does not escape the DNA of its founding.

But it is not forgotten.  NAMI began in 1979 when a mother in Wisconsin published a notice of a meeting at her house for the parents of children with difficulties.  She discovered she was not alone.  Her living room filled to overflowing by parents, desperately concerned for their children with schizophrenia.  Together they pushed back against the medical establishment that said it was their fault.  Together, they pressured for the research that revolutionized basic scientific paradigms of mental illness.  No, schizophrenia is not caused by schizophregenic families.  It is a disease of the brain.

Then real treatment began.  Better understanding about the disease led to better medications.  People were able to leave those lost locked wards.  Yes, some live in the streets today.  But some live in sheltered homes.  And some live on their own.  I know people with schizophrenia who work, who are married, who have good lives.

Okay, some have moved from locked wards in psychiatric hospitals to locked wards in jails and prisons.  More than half the residents of our jails and prisons have a serious mental illness.  But back to NAMI...

NAMI was created by and for families.  Its signature program is Family to Family, and this year's convention celebrated its 20th anniversary.  The testimonials go on for days about the difference, the support, the education and hope this program has offered a quarter of a million people so far.

Family to Family is part of the DNA and enduring legacy of NAMI.

The Miracle Of Medicine

NAMI was built on the medical model.  The medical model created the medications.  The medicines made miracles.  And that, too, is the DNA of NAMI.

Nineteen companies and organizations supported the Convention at the Logo-on-the-program level.  Nine of them were pharmaceutical companies.

A regular feature of NAMI Conventions is the Ask-A-Doctor sessions, where people line up at the microphones and get little five minute consultations on how to tweak their current medications and what else to try. There is always something else to try.

NAMI's Mission Grows

Meanwhile, people who themselves have mental illness joined NAMI.  And this part of the history I can't tell you, because we aren't celebrating it yet.

Our part of the story is different.

Families talk about the miracles of medicine.  What they want to know is how to get their loved ones to take them.  People who have these brain diseases talk about how how the medicines aren't good enough.  And we want to know about Recovery.

Recovery?

There are no biomarkers.  There are no cures.  There are no vaccines.  There is no War on Brain Disease, no national motivation, and less money for research and treatment every day.

Half of us have developed our brain disease by age 14 and 75% of us by age 25.  So we have to live with it a long time.  Granted, not as long as we might otherwise.  We die, on average, 25 years sooner than everybody else.  We have the same life span of the people of Bangladesh.  These numbers come from Dr. Thomas Insel, Director of the National Institute of Mental Health, who spoke at a special session the second night of the Convention.

We are not impressed by the Miracle of Medicine by trial and error.

So while some of us are still stuck in those Ask-A-Doctor lines, looking for a better miracle, the rest of us have gone to work on a concept called Recovery.

Recovery is the core concept of the NAMI program that didn't get mentioned at this year's convention -- Peer to Peer.  P2P is a ten week course on what to do after you have been discharged with a prescription and a follow-up appointment, what nobody told you about when they showed you the door, because frankly, they don't know about it.  Dr. Ken Duckworth, medical director of NAMI was asked about nutrition at the PTSD Ask-A-Doctor.  His response, Doctors don't learn anything about nutrition.  It's just too bad there was no Ask-A-Nutritionist session.  Because even if you have found the very best hammer in the world for your job, if you want to build a house, you will also need a screwdriver.

Recovery is about building the whole house, about living the best life possible under the circumstances.  It is about every paradigm, every treatment, every health practice and habit we can find that will improve our lot and add value to our lives, short as they may be.  It is about putting it all together and getting on with our lives. 

Recovery?

I didn't hear about Recovery at the NAMI Convention.  Well, I wasn't everywhere.  I have the dvd with powerpoints and audio, and will be exploring and reporting on what I missed.  Rumor has it that the sessions on borderline discussed therapy.  Therapy would be one of the tools in the Recovery toolbox.

There were recovery tools in evidence at the convention.  I attended a drumming circle during lunch one day, drama during lunch another day.  There was an exercise class during lunch.  Yoga was offered during dinner, a poetry slam during the party.

I expressed my regret on the evaluation form that there was so little coverage of recovery concepts, and that little bit was pushed to the corners of the schedule.  Two pages later on the evaluation form, I found a question asking me to evaluate the entertainment portions of the program, the drumming, the drama, the yoga...  Entertainment?

So, yes, people living with mental illnesses are part of NAMI and were present at the convention.  But we are still at the kiddie table.

Parents With Adult Children With Schizophrenia

So there I was, at  the end of the Stars of Light Theatre Troupe's amazing performance, when the players were introducing themselves.  It was Saturday, the last day, and I was feeling irritated by the organization of the conference and its emphasis on pharmaceuticals, even while speakers recognized they don't work that well.  (I haven't even mentioned the previous night's major speaker slot given to the guy who has a book and a treatment plan for how to get people to take their meds.  That was offered and addressed to family members entirely, while the rest of us were invited to a movie... Now in an of itself, it raised some excellent issues -- but I am talking about a pattern here, a deeply encoded pattern.)

Evidently, this irritation of mine is because I have bipolar, and when people with bipolar experience something that doesn't seem right, we get irritated and complain because we have a sense of entitlement.  Duly noted.

Somebody asked if being in the troupe helped the players deal with their symptoms.  That would be a recovery-type question, and why I would not have thought to call this presentation part of the convention's entertainment.  And one woman answered, Not only do I have bipolar and borderline and some other things, my son also has bipolar with psychotic features.  I don't know where he is right now.  Without this group, I don't know how I could manage.

So I was flipping madly through my program looking for an empty space where I could write down her words, because I knew I needed to remember them.  I saw, and with this woman's words in my head the eyes of my heart were opened so that I saw, that half of Thursday morning's sessions had been given over to estate planning.

Estate planning.  At a mental health conference.

My wife and I are doing retirement planning right now, a little concerned about how we will manage to make that money last as long as we do.  We are not doing estate planning.  Because we don't need to.  Our son does not have schizophrenia.

Then a woman stood up in the audience and expressed her support of the first.  She said, I am not worried about my son this weekend.  Because I do know where he is.  He is in the hospital.

I thought about my son.  I know where he is.  He is living with his most excellent wife, getting a PhD at a major university and doing the thing he loves best, teaching.  That's a Phi Beta Kappa cord around his neck in this picture, taken the day he graduated from college.

Broken Hearts

And these words, which I command thee this day, shall be upon thy heart. -- Deuteronomy 6:6.  The student asked the rabbi, Why on?  Why not in?  His answer, That way, when your heart breaks, it will fall in.

NAMI is about broken hearts.  The DNA of NAMI is mother love.  Does a mother forget her baby, or a woman the child within her womb?  Being a mother, I know there will be no forgetting, no changing what NAMI is about.

It will take time and tears, no small irritation, some shouting, experiments, mistakes and careful negotiation for people with mental illness to take our place at the grown-up table.  Somehow in that process, we will have to take care of our mothers.  Because they do not forget us.

It's just that, some of us do not have such parents.  And even the others grow up.

graphic of clozapine's chemical formula by Harbin and in the public domain

photo of Thomas Insel, Director of NIMH, in public domain

photo of toolbox by Per Erik Strandberg and used under the Creative CommonsAttribution-Share Alike 2.5 Generic license

ceramic of children playing by Hannie Mein and used under the Creative CommonsAttribution-Share Alike 3.0 Unported license
photo of graduation day by Jenny O'Day

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

Souls in the Hands of a Tender God -- Again

A month's worth of travel + new medication = time for a rerun.

This one has something to do with my NAMI Convention reporting.  It's a book report on Souls in the Hands of a Tender God.  I met the author, Craig Rennebohm at the Convention's presentation on FaithNet. 

First we pause for a word about FaithNet:

NAMI FaithNet is a network composed of members and friends of NAMI. It was established for the purposes of (1) facilitating the development within the faith community of a non-threatening, supportive environment for those with mental illness and their families, (2) pointing out the value of one’s spirituality in the recovery process from mental illness and the need for spiritual strength for those who are caretakers, (3) educating clergy and faith communities concerning mental illness and (4) encouraging advocacy of the faith community to bring about hope and help for all who are affected by mental illness.

NAMI FaithNet is not a religious  network but rather an outreach to all religious organizations.  It has had significant success in doing so because all the major religions have the basic tenets of giving care and showing compassion to those in need.

Next year's NAMI Convention will be in Seattle, Craig's homebase.  He set himself a goal of enrolling 132 congregations in FaithNet as part of bringing NAMI there.

One bit of feedback to Craig, if he's reading:  Congregations have a particular skill set that would be very useful at a NAMI Convention -- ushers and greeters.  Just a thought...

Meanwhile, with a few images added, from January 6, 2010 --
 
Souls in The Hands of a Tender God

Rush Limbaugh says that he experienced the world's best health care in the United States of America, and it does not need fixing.  I am glad for Rush that he was staying at a resort near a world class hospital for coronary care last month.  I imagine he has insurance to pay for the hotel-like accommodations, the angiogram and several other tests that failed to find the cause of his chest pains.

Given his public platform and his wide influence on American opinion and public policy, I wish Rush would expand his experience of health care in the United States of America.  He could shadow Craig Rennebohm for a few days to find out how health care works for other people.  Craig is the pastor of Pilgrim Church (UCC) in Seattle and, as part of their ministry, "companions" persons who are homeless and mentally ill.  With David Paul, Craig describes their quite different experiences in Souls in the Hands of a Tender God: Stories of the Search for Home and Healing on the Streets.

One Nation, Two Health Care Systems

The emergency personnel got Rush to the emergency room like snap!

That's not what happened to Sterling

Over months Craig built the trust of this man who camped in the church courtyard, surrounding himself with trash to protect himself from the evil spirits.  Finally, when the trash included highly combustible materials, Craig convinced him to go to the hospital.  Winter was coming.  The mental health professionals (MHPs) who showed up said they couldn't take Sterling in, because he was a voluntary patient.  They only picked up involuntary patients.  Sterling accused Craig of betraying him and fled the scene.  Craig couldn't find him until a month later, when he read of a homeless John Doe who died of exposure.

Rush was examined for days, still hospitalized, after they already knew he was not having a heart attack and not in immanent danger.

That's not what happened to Shelly

Shelly was seven months pregnant, with bronchitis and in a state of euphoria and grandiosity.  Craig brought her to the ER.  But she wasn't a good faith voluntary patient.  They believed she would check herself out so she could go accomplish her mission.  She didn't qualify for involuntary admission, because she wasn't a danger to herself or others.  What about her baby?  What about her bronchitis?  Bring her back when she develops pneumonia.

Karl Is A Vet

Karl's story is the clearest example of how health care in the United States of America is not working just fine.  Karl is a vet.  He was arrested for resisting arrest for vagrancy.  He just remembers being attacked, and later that the people in prison were poisoning him.  He was transferred to the hospital for two years, then back to jail to be released, no money, no meds, nothing but the clothes on his back.

Craig had been alerted.  He was a total stranger when he met Karl at the jail that morning and took him to breakfast.  Karl couldn't compute the question, White or whole wheat?

They continued to a clinic, where Karl couldn't understand or fill out the two-page form.  Since he wasn't in immediate danger, they sent him to the Department of Social and Health Services to apply for SSI.  Craig helped him with the six-page form there.  The social worker discovered he once received benefits.  So he had to get a statement from Social Security.

Social Security noticed Karl was receiving veterans benefits.  Next stop, the Veteran's Administration.  But the counselor there said they were a PTSD program and didn't take walk-ins.  He sent them a mile away to the Federal Building.  His file was in another state, so they had to get it transferred.

Meanwhile, the file was on computer, and said he was getting 50 cents a month, which was going to the hospital. (They could look up the information, but couldn't give him a copy until the file was received in a few days.)  Craig said, He's homeless and needs medication right now.  So he was sent to the VA hospital, then to the outpatient clinic in the bowels of the hospital.  Several kind strangers helped Craig find the way.

To get help at the outpatient clinic, Karl had to be admitted through ER, where they determined his illness was not service-related.  The waiting list for outpatient treatment was six months, and he might not get in, because he had been hospitalized only once.  The social worker suggested they try the clinic where they had started the day.  By now it was 6:30 and the clinic was closed.  They covered miles that day.  Karl spent the night in a homeless shelter, still not able to remember Craig's name.

That's where I will end the saga, though it is still several days from completion.  Small wonder that 83% of psychiatrists want a national health insurance plan, a higher proportion than any other specialty.  So many of their patients are homeless.

At Least I Have Insurance
 

And I thought I was having a hard time.  I have boatloads of people to help, support and advocate for me.  My salary is continued while I fill out applications.  I have a roof over my head and continued health insurance.

Most of all I have Helen, who asked me all the repetitive questions over several days, monitored my capacity, and terminated the work each day, usually after twenty minutes when I was getting overwhelmed.  My phone has been set to mute the disability company whose questions put me over the edge.  She screens my messages.  This process turned me into a pill-popping wreck last fall, and though my memory is not what it used to be, I do know my helper's name.

Rush, the system works well for you.  But not for the rest of us who live in the United States of America.

A Different Way

I commend to your reading Souls in the Hands of a Tender God by Craig Rennebohm with David Paul.  Craig uses his stories to help us see the face of Christ in these abandoned ones, and to frame his theology of God and what it means to be a human being in the sight of God.

We cannot make the journey alone.  None of us.  We are made for life together, made for community.  Those of us blessed with health and wealth may be tempted to forget that.  We may want to believe that we are self-made and assume that we have succeeded through our individual merits alone...  Illness - and especially mental illness - confronts us with the unavoidable truth of our frailty and finitude.  Illness underscores our fundamental dependence on the love and help of others...

Companioning

Craig describes the work that his community is doing, "companioning" people who are mentally ill.  Companionship can be described in terms of four practices: offering hospitality, walking side by side, listening, and accompaniment.  Let's consider these in detail...

And he tells the astounding story of a very different kind of system in Gheel, Belgium.  I will tell you about The Miracle of Gheel next week.  There is a different way to do this.

photo of Rennebaum from http://mentalhealthchaplain.org

photo of toast by Ranier Zenz and used under the terms of the GNU Free Documentation License

US-GSA-USAServices-Logo.svg Logo of the USAServices program, a program to help other government agencies with online communication, managed by the General Services Administration is in the public domain etching of Sysiphus by Max Klinger, 1914, in public domain book jacket from amazon.com  woodcut of Road to Emmaus by Julius Schnorr von Carolsfeld in public domain

 

Recovery In Progress -- My First NAMI Convention

Dr. Ken Duckworth's job at the Ask A Doctor about PTSD session was to make some opening remarks and then let people ask their questions.  He rattled off a list of treatments and said, The good news about PTSD is, we know what causes it -- trauma that was not able to be processed adequately.  The bad news is, the treatments just don't work so well.

Short and to the point.  Actually, I am not so negative (right this very minute, anyway) about treatment as Dr. Duckworth, because I am not looking for the magic med anymore.  I know about recovery.

Recovery is about collecting tools and pulling them out when the occasion requires.  I will illustrate.  But first the setting...

Last week I attended my first NAMI (National Alliance on Mental Illness) Convention in Chicago -- 2300+ people who have mental illnesses, family members, advocates, volunteers and caregivers, with a few scientists thrown in for good measure.  As a friend said to prepare me, A NAMI Convention has a certain kind of energy.  Yes, it does.

I have been to big conventions before, used to be a legislator (called Deputy) for the Episcopal Church, which gathers 8-10,000 or so Deputies, Bishops, exhibitors, visitors, volunteers and the like every three years.  I stopped doing that when I figured out that every three years General Convention tripped my hypomania and was followed hard on by a depressive episode.

So this was my largest gathering in some time, with plenaries, workshops, symposia, networking and ask-a-doctor sessions, drumming, theater, yoga and talent show, internet cafe and peer counselors, exhibitors, book sales and an information booth which was the best hidden spot of the whole damn Chicago Hilton.

You can expect a number of blogposts out of this event, including dueling comments between me and fellow blogger John McManamy.  Now that we have finally shared a beer, does that make us blogmates?  I began writing this piece in the hotel room, late after the last gasp, the rawest of my posts to come.

I knew it was a mistake to make Ask-The-Doctor-About-PTSD the last thing I attended.  It's just, that was the schedule.  Most helpful take-away: The brain is simply not designed to metabolize certain experiences.  PTSD is the result of incompletely metabolized traumas.  Bottom line, it is a normal response to an abnormal event or series of events.

The brain keeps trying to metabolize these unprocessed events/memories/emotions/bodily sensations.  They lurk beneath the surface, waiting for the next opportunity to emerge, when triggered by some reminder.

Oh, I was triggered, alright.  The last question of the day was about a particular symptom I don't talk about and religiously avoid.  I left the room reliving it, dizzy and disconnected.

Walking out, I heard the voice of my therapist, who once ended a session saying, The things we have talked about today probably have triggered your past traumas, and you will be dealing with the effects after you leave.  So how are you going to take care of yourself today?

Time to pull out that toolbox.

The Ask-A-Doctor doctor listed half a dozen treatment modalities for PTSD: meds, support groups, EMDR (Eye Movement Desensitization and Reprocessing), sleep regulation and aerobic exercise.  He mentioned Prazocin for nightmares.

First off, pop my anti-anxiety rescue med, put on my walking shoes and go get some aerobic exercise.  Work off that negative energy.

Just outside the door was Grant Park.  An art exhibit diverted me from my aerobics.  But art is good, very good.  Change the channel -- that's Cognitive Behavioral Therapy 101.

I stood still and drank in paintings inspired by water.  Not this painting, actually, which is exhibited just down the street.  But I thought of it.

Water is good.  It evens out the emotional turmoil. -- So says my other therapist, the one who does eastern-based energy work.  You see, when even the doctors acknowledge that western treatments (they don't call them western, because they don't speak of there being any other treatments) work poorly, I am not going to limit my tool box to only half the planet, especially not the more rigid half.

I spoke with the artist about perspective.  He paints on a flat surface, so doesn't think it matters which side is up.  I breathed into the here and now.  Thich Nhat Hanh taught me here and now.  But here and now is my worst subject.  And somebody interrupted to talk about showings and art business.  There were too many people -- had to reduce stimulation.

My energy therapist would recommend grounding.  I headed back to the gardens, flowers, trees, dirt, all good, all grounding.  Eating is good for grounding, too.  Maybe I should eat something.

From Alcoholics Anonymous: HALT = pay attention to when you are Hungry/Anxious/Lonely/Tired.  No, a martini is not in the recovery toolbox.

So I bought my inner child a strawberry ice cream -- a drippy cone instead of my usual adult cup.  Sugar isn't really the best choice, but it was red and a gift to my inner child.  Then I head off to find some meat.  Meat feeds the first chakra.  First chakra is about safety.  PTSD is about the amygdala is about safety is about the first chakra.

Still I was struggling.  I don't just have my own pain; I suck up the pain of every person with whom I have spent the last three days.  All those stories -- how can there be such a world?  How can I live in such a world?

I picked up my whole personal Book of Traumas, the traumas that never got resolved, that get retriggered today when I try to resolve them in therapy, the distrust I try to pretend does not exist toward the people who try to help me but they end up retriggering the traumas I can't resolve because they never seem to address that they are retriggering them and my retriggered shame prevents me from telling them and I truly believe the result will be retrauma anyway.

There are exceptions to that negative thought.  List the exceptions -- Cognitive Behavioral Therapy 102.  But how do I know who is for real...?

So I head back to the convention, walk over the train tracks.  And there is another trigger, another overpass, another trip to Chicago, another episode, another long time ago.  How quickly is that train traveling?  How far away?  How fast does a body fall that far?  How to time the collision of the two?  Velocity problems were the one thing that defeated me in high school math.

But I am not in the right spot anyway.  Geometry I got.  I need to be right -- there -- where -- a woman is pushing a baby stroller.

Oh.  Okay.  Not tonight.  I have an Iron Rule.  In a world filled with trauma, to the extent that it lies within my power, I will not cause trauma.  A two-year-old is sitting where my demon would call me.  The two-year-old wins.

God bless the internet that led me to David Conroy some years ago.  The first sentence of his book Out of the Nightmare brought sense out of the chaos that compounded the pain of my suicidal symptoms.  Suicide is not chosen; it happens when pain exceeds resources for coping with pain.

Tonight my pain was painful.  But I have survived worse, much worse.  And tonight my resources are many.  Tonight the thought was more than a mosquito, but it wasn't a tiger.  I do not underestimate the lethality of this disease.  One in five people with bipolar II do not survive it.  Tonight, I am still of the four.

I know people freak out over the suicidal ideation part of mental illnesses.  I apologize to my friends for causing them pain by bringing up the subject -- even though my need to protect you from this pain adds to my own.  I try not to bring it up, except with people who know what I am talking about.  But this is one of the tools in the Recovery Toolbox.  Those who do know what I am talking about need this tool.  And this post is for us.

Ironically, the state of the art treatment for people who have a lot of suicidal ideation and behavior, people with a diagnosis of Borderline Personality Disorder, is Dialactical Behavioral Therapy, radical acceptance.  Starting, not ending, but starting with acceptance even of that symptom that freaks out so many of you.

Yes, sometimes I have those thoughts.  They are well-worn grooves in my neurological pathways.  Any number of things will trip the cascade that leads there, including things you might not imagine, a cold sunny day, my doctor suggesting a new medication, an overpass.  These are not reasons.  Suicide is not about reasons.  These are triggers of neurological pathways that have a current of their own.

It is what it is.  Those five words sum up Dialectical Behavioral Therapy, an offshoot of CBT.  They were the chorus sung by one of the players in the lunchtime drama troupe.  Saturday night, I repeated them to myself.  Often when that thought appears, somewhere between a mosquito and a tiger, I say, There it is again.  That's all.  Mindfulness.  The thought doesn't have to freak me out, doesn't have to freak you out.  It is what it is.  Move on.

As I crossed the overpass, I felt a draw, a pull toward the hotel.  It was an energy, a spiritual energy on the side of life, two thousand people in that building, rooting for me, for my life, for one another, for you.  One of them even blowing a didgeridoo, accompanied by a flute, to be followed later by another who whistled Somewhere Over The Rainbow, all spiritual energy on the side of life.

The wisdom is ancient.  Two are better than one, because they have a good reward for their toil.  For if they fall, one will lift up the other; but woe to one who is alone and falls and does not have another to help.  Again, if two lie together, they keep warm; but how can one keep warm alone?  And though one might prevail against another, two will withstand one.  A threefold cord is not quickly broken.  [Ecclesiastes 4:9-12, New Revised Standard Version]

So that is my first report of my first NAMI Convention, the most confusing and most compassionate experience I have ever had with 2300 people.

(Find your local NAMI Chapter here.)

photo of toolbox by Per Erik Strandberg and used under the Creative CommonsAttribution-Share Alike 2.5 Generic license

General Convention Seal for the Episcopal Church in public domain

Olaus Magnus's Sea Orm, 1555 in public domain

Water Lilies by Claude Monet, 1906, in public domain

photo of Grant Park in Chicago by Alan Scott Walker and used under the Creative CommonsAttribution-Share Alike 2.5 Generic license

root chakra by Muladhara Chakra and used under the Creative CommonsAttribution-Share Alike 2.5 Generic license

photo of Chicago Orange Line by Daniel Schwen and used under the Creative Commons Attribution-Share Alike 2.5 Generic license

photo of Coal Creek Falls by Walter Siegmund and used under the Creative CommonsAttribution-Share Alike 2.5 Generic license

fresco at the Karlskirche in Vienna by Johann Michael Rottmayr, in public domain

book covers by amazon.com

Dopamine and Dementors

Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself...soulless and evil. You will be left with nothing but the worst experiences of your life.

-- Remus Lupin to Harry Potter

Harry Potter and the Prisoner of Azkaban

Been there?

While we wait with bated breath for the final episode of the Harry Potter movie series, here is a post on the neuroscience of Harry's worst nightmare.

Dementors, you see, are dopamine depleters.  They are not to be messed with.

Neither is any other kind of dopamine depletion.  Here is one clinical case, an experiment conducted on one highly-functional, never-a-whiff-of-mental-disturbance 21-year-old who received a dopamine depleting drug over the course of 25 hours.