Showing posts with label NAMI. Show all posts
Showing posts with label NAMI. Show all posts

Why Am I Still Sick? Mental Illness, Faith, and the Love of God

Rumor has it, I'm going to start preaching again. My brain functions a lot better than it used to. But it still functions slowly. So to give myself plenty of time, I have been looking ahead to the scriptures that are coming up in the lectionary.

[In the Episcopal Church, among others, we preachers don't pick and choose our favorite bits of the Bible. We get confronted by and have to deal with what is assigned.]

That's how I came across Matthew 9:18-26, one of the texts for early June. Jesus is on his way to heal a young girl when a woman with an issue of blood reaches out surreptitiously to touch him. He feels the power go out of him and turns to confront her. Then he says:

Take heart, daughter; your faith has made you well.

Ah, here it comes -- the faith question of every person with a chronic or fatal illness, every person who prays and has people praying for us.

Don't I have faith? Don't I have enough faith to get my healing?

Many years ago in one of my darkest times, I met a young woman. She was part of a mission group who had come from Mexico to Costa Rica. On behalf of a local church, she and others would be going door to door, sharing their witness.

She asked me what I was doing in Costa Rica. So I told her that I had depression and was writing a book about it.

Without missing a beat, she answered, If you give your life to Jesus, he will heal you, and you won't have depression anymore.

She described her life in her teens, a life of indulgence, as she put it. She was a smoker. But then she gave her life to Jesus and he turned her around. He took away her addiction to cigarettes

Oh, honey.

She and I had met at the church that was sponsoring the mission. The worship service had gone long. I was tired. And I didn't have enough Spanish to get into it with her.

So I didn't tell her that 

  • I fell in love with Jesus when I was eight and was baptized
  • I took Jesus as my Lord and Savior when I was eighteen at college
  • I gave my life to Jesus when I entered seminary at twenty-five
  • I vowed to . . . pattern my life in accordance with the teachings of Christ, so that I may be a wholesome example to my people when I was ordained a priest at twenty-nine
  • I . . . well, you get the idea.

The thing is, I have a brain that works differently, and sometimes not very well. Living a life in Christ has not protected me from the symptoms of bipolar disorder, nor even from feeling suicidal at its worst.

Bipolar disorder has been around for millennia. People had it before the coming of Christ. And people have had it since. Faith in Jesus really has nothing to do with it.

I am glad that Jesus took away her addiction to cigarettes. I am glad that Jesus healed the woman with an issue of blood, that he freed the Gerasene man who had been possessed, that he raised Lazarus from the dead.

But he hasn't healed me. At least, he hasn't taken away my bipolar.

Why not?

No, don't answer that question. I don't want an explanation. I especially don't want God to explain to me how He -- and I use that pronoun on purpose -- how He is using my suffering to some greater end. To help you, I suppose.

I don't want a God who manipulates people who are suffering, moves us around on some chessboard as part of His grand design.

For God's sake, don't tell me to have faith.

What a cruel notion that if you just believe hard enough you will be healed.

The first preaching I will do after an absence of a few years will be for a man who was one of the most faith-filled people I know. He died after waiting for years for a lung transplant, while people around the world prayed for him. As people have prayed for me.

Why am I still sick? I think that's the wrong question to address to God. I think that question posits the existence of the kind of God that we want, a God who will answer our questions and give us certainty and make us feel good.

A God that exists only in our desires and our imaginations.

Whoa! Did the preacher say that God doesn't exist? No, the preacher said that the God that does exist is not small enough to fit inside the box of our desires.

Who is the God who does exist? I am a very smart person. Nevertheless, that question is beyond my bandwidth. I have my own desires about God. But I no longer expect that God will satisfy them.

However, reading all those stories of healings year after year, over forty years of preaching on them, there is something that I have noticed. In almost every one of them, part of the healing is a return to community.

The woman who had had an issue of blood for fifteen years (endometriosis?) would have been unclean on that account. Nobody would have touched her. For fifteen years. Now she could take a neighbor's hand.

The Gerasene man who was possessed (schizophrenia?) lived in chains outside the city of Gerasa. When he was restored to his right mind, Jesus sent him home.

Lazarus -- dead and in the tomb. Jesus returned him to his sisters.

And me with my bipolar -- that is the kind of healing I have experienced. When I was newly disabled and not leaving my second floor condo except to go to the doctor, I joined NAMI -- National Alliance on Mental Illness. I went a Peer to Peer class, where people with mental illness teach other people with mental illness how to navigate our lives.

I discovered people who didn't care whether I had faith or not. They didn't need for me to be healed to confirm their own faith. They expected I wouldn't be. And they loved me. They invited me in. They were my new community.

Romans 8 -- that's what I believe. When I don't believe in God -- I really don't believe in the God who withholds healing based on my puny wounded capacity for faith -- I do believe this:

I am sure that neither death, nor life, [nor feeling suicidal], nor angels, nor principalities, [nor health insurance companies], nor height, nor depth, [nor the personal hell of side effects], nor anything else in all creation will be able to separate us from the love of God in Christ Jesus our Lord.

I am not healed. But I am loved.

That's a kind of healing. And it is enough.

photo by Nevit Dilman, used under the creative commons license.

On the Road Again for NAMI: No Cougars Encountered

NAMI and I go way back. I don't even know when or how I heard of this organization, the nation's largest grass roots organization dedicated to building better lives for the millions of Americans affected by mental illness. But it has walked beside me for thirteen years now, as I have tried to build my own better life.

NAMI began in 1979, when some Wisconsin parents of people with schizophrenia pushed back against the prevailing theory of the day, that they had caused this terrible disease in their children. They aligned their new organization with the view that schizophrenia is an illness of the brain, and a commitment to support research into medical approaches to alleviate this and other mental illnesses.

NAMI provides advocacy, education, support and public awareness. My own life has been touched by NAMI through their Peer to Peer classes and support groups. My wife attended Family to Family classes. In the last ten years, these core programs have expanded to address other needs.

So most years, I have participated in their annual fund raiser, the NAMIWalk. For the first few years, I walked with NAMI Johnson County in Iowa City, with Team Prozac Monologues. It was a party affair, kicked off with balloons and Middle Eastern dancers and roller derby demonstrations. And t-shirts, always t-shirts.

This year we did it DIY. COVID cancelled the big events. We all walked our own routes.

Five Good Books I Recommend for World Bipolar Day

Knowledge is the key to taming this beast we call bipolar disorder. The more you know about what is happening inside that beautiful brain of yours, the better you can avoid letting it bite you in the butt.

Alas, many people with bipolar think their doctors will tell them what they need to know. Most of the psychiatrists I have seen gave me an abbreviated (and sometimes disingenuous) description for potential side effects of the pills they prescribed. And that's it.

How do I actually live with this beast? Take my meds. What will it mean for my life? Not so much as a pamphlet.

Psychoeducation for bipolar disorder has been shown to reduce recurrence of depressive, manic, and mixed episodes, all three, and to reduce hospitalization, as well. It includes information about the biological roots of the disorder, the rationale for medication, other treatment options, early warning signs of episodes, and common triggers. It aims to improve adherence to treatment plans. It usually is offered in a group setting.

It isn't offered often.

Silence Kills -- The Stigma of Mental Illness Redux

It's Mental Health Month again. Out comes the stigma word, the pleas for understanding, the heart-warming whatever.

I am so done with stigma. Frankly, I am insulted that NAMI et al still use the word. Is Black Lives Matter about stigma?  It's dangerous to be either in the US, and for the same reason. Prejudice, people. We are talking about prejudice.

The following was first posted in July 2013. Alas, we are still trying to get our heads out of our asses. The Affordable Care Act made some progress, a little, toward mental health parity. Insurers had to get creative to deny us coverage. But this congressional session, it's all up for grabs again, whether our illness will get covered at all. And the prejudice of doctors -- don't get me started.

So from July, 2013 --


I don't use the s-word. I hate this title. I use it only because people who need this post will use it when they google.

I don't use the s-word. But here it is.

First from Google:

Definition of STIGMA

  1. A mark of disgrace associated with a particular circumstance, quality, or person: <the stigma of mental disorder>.

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?

Missing My Friends With Voices

I sat next to the young man as he told his story in Peer to Peer.  Honestly, he scared me.  I was new to the loony world.  I was getting less scared of people like me (and through them, eventually less scared of me).  But I was still scared of people with schizophrenia.  And this one, especially.  The others had a grip.  My young man had missed a session or two, not yet stable, like, able to tolerate a large room with twenty people stretched around big tables.

He whispered.  They asked him to speak up, but the longer he talked, stretching the three-minute limit to ten or fifteen, the softer his voice got.  I strained to hear him.  I was the only person in the room who could.  The story rambled, hitchhiking around obstacles and through obscure events.  If he hadn't whispered, if I hadn't strained so hard to hear the words, I would have missed it.  I would have missed him.

It actually made sense.  There was a flow.  The connections were loose, granted.  But if I got in the canoe with him, I could ride the river as he paddled through his quest to make sense of it.

That was my introduction to the inner world of schizophrenia.  My life is richer for it.  Yours could be, too.

Caveat -- Mental Illness is Real

Stages of Recovery - AKA Hope

It gets better.  It really does.

People who get tired of the Chemistry Experiment go off their meds.  Why?  Because the meds don't work.  Or they make us sick.  And the doctor doesn't hear us, because the doctor has one tool in his/her toolbox.  [Hint: It's not an ear.]  And he/she thinks that the solution to our problem is compliance, because there isn't time for listening and problem solving.

When you walk into a hammer store, they will try to sell you a hammer.  Fair enough.  If you are trying to rebuild the life that your illness took from you, chances are you will need a hammer.  Chances are you will need some other tools, as well.

The doctor doesn't have those other tools.  But they are out there.  And so is the map.

You are angry that the meds promised what they could not deliver.  Get over it.  Pull out the map.  Or the toolbox.  Mixed metaphor.  Whatever.  Get over it.  Get to work on your recovery.

The Recovery Map

Recovery - The Medical Model Continued

Last week I began scavenging my upcoming Mental Illness Awareness Week presentation Recovery: Rewiring the Brain for a series of blog posts.  I left you in the middle of the Medical Model.  The graphic is on the left.  The narrative left off as the person with the broken brain was reading the patient information sheet, gulped at that list of side effects, remembered the doctor said she should weigh her costs and benefits, and then discovered that, according to the patient information sheet, the doctor had already done the weighing for her, and all she had to so was swallow the damn pill.

The Chemistry Experiment

The way it actually happened was this.  The sixth antidepressant my doctor wanted to try, she said, I get really good results with this medication.

So I wanted to know, remembering the results I got from her last brilliant idea, or rather, from the samples she had just received from the last sales rep, What kind of results will I get?

Recovery - The Medical Model

My Latest Obsession Begins

It was a talk intended for a general audience.  Well, what was assumed to be a general audience.  Not many doctors attend the monthly meeting of NAMI Johnson County.  But some people in the room know a lot more about the brain, what goes wrong, why, what can be done and what really works than the average viewer of those Zoloft ads on TV.  We have to.  We have come to understand that our lives depend on it.

So when the new director of the psychiatry department explained it all, some of us caught the nuances, and squirmed in our seats.

What Is Recovery?

Is Recovery Possible? - Kayla Harrison Continued

A few weeks ago I published a video interview with Kayla Harrison, USA's first gold medalist in judo.  The story was dated before her win, and showed her determination: if not London, then Rio...  (The source is the Boston Globe.  Kayla didn't make NBC's radar screen until after she won.)

Lots of shots in the gym.  A young lady you wouldn't want to mess with.

Except, her former judo coach did, starting when she was twelve years old and for three years.

Today, her former coach is in jail, and she has her gold.

Well, of course we love this story.  It follows the USA's favorite narrative arc: misery, struggle, justice, triumph.  We will listen to this story, read this book, watch this movie every night of the week.

Some of us will ponder it a little longer than others.  I expect Kayla is one.

Get Over It, Already

Purple Heart for PTSD

I am pleased to have scooped NAMI and Fox News on this one by two years.

Some people say we have dumbed down PTSD, and that we dishonor the suffering of soldiers when we give the diagnosis of PTSD to people who have the same symptoms and same brain dysfunction of PTSD, but whose traumas were of a lesser severity.  In other medical departments, a broken leg is a broken leg, whether the person fell three feet or thirty.

Back in May, 2010 I proposed that the way to honor soldiers whose PTSD is the result of war injury is the way we honor any soldier wounded in war -- the Purple Heart.

Better yet, let's honor their sacrifice by preventing their trauma in the first place.  No more!

Meanwhile, check out Guitars for Vets.

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.

Relapse/Maintenance - Stages of Change

Michelle Obama likes pie.  Michelle Obama likes cheeseburgers and french fries, especially when followed by a hot fudge sundae covered with peanuts.

And her mission as First Lady of the United States of America is to address the epidemic of childhood obesity.

She began this effort when her children's pediatrician noticed they were developing some issues.  That brought her own food issues to her attention.  So she changed the way her family eats.  Less fast food.  More fruits and veggies.

It wasn't about looking like a model, getting into that dress for the big event.  It wasn't a diet.  It was, and is about change, for the sake of health.

She still eats pie.  Just, not all the time.

NAMI Camino - BDNF Meets 5K

Exercise and learning new things -- two of the most powerful tools in the Recovery Toolbox.  They came together in my NAMI Camino, April 28, 2012.

NAMI Walk/NAMI Camino gave you the set up.  NAMI Johnson County held its annual walk/fund-raiser last week, when I was in Costa Rica.  It would be my fourth and last time participating.  But I would be in Costa Rica!  Inspired by the San Diego Walk in 2010, when a battalion in Iraq ran while San Diego walked, I decided to do Johnson County's Walk long distance -- though I would not be running in full battle armor and in the heat of the day.  My extra effort was confined to carrying a laptop to record the event.

With the following results:

So what follows is a series of installments, stopping at each kilometer marker.  This series shows you what you can do with Photo Booth, Youtube, not much skill, and a willingness to experiment.  Everything is reversed, left and right, which won't confuse you unless you are trying to read t-shirts or street signs.

NAMI Walk/NAMI Camino

I started a new project today, researching the route for my NAMI Camino.

I Walk For The Mind Of America

April 28 will be my fourth Walk to raise funds for NAMI (National Alliance on Mental Illness).  I have been most gratified by the support from friends who help me give back to this organization that has made such a difference in my life, and hundreds of thousands of others.

History Of NAMI

Since its founding in 1979, by a bunch of uppity Wisconsin women who said There is no such thing as a schizophrenic family; we did NOT cause our children to have this devastating BIOLOGICAL disease, NAMI has been a beacon of light, education, advocacy, and support first to families and then to persons living with mental illness.

My History With NAMI

In my case, Peer to Peer, a 10 week class helped me to understand, come to accept, and learn skills to live with my illness, whatever they think it is this week.

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?


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
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

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.


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. 


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

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...


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
photo of toast by Ranier Zenz and used under the terms of the GNU Free Documentation License
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
 woodcut of Road to Emmaus by Julius Schnorr von Carolsfeld in public domain

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