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
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.

Habit and the Stages of Change


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

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

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

How Do You Change A Habit?


You're gonna take more than one step.

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

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

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

Nine cups a day of vegetables and fruits:

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

Stages Of Change 

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



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


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


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


Crossing Canyons/Building Bridges In My Brain 


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


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


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


And The Word Became Flesh 


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


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


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

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

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

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

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

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

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

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

Minding My Mitochondria -- A Review

Dr. Terry Wahls practices internal medicine and treats psychiatric patients at the VA in Iowa City Iowa.  In the year 2000, she was diagnosed with relapsing-remitting Multiple Schlerosis.

MS is an autoimmune inflammatory disease that damages the myelin (think, skin) of neurons, causing breaks in communication between the brain cells, neurotransmitter imbalances and cell death, with resulting physical and cognitive disabilities, including blindness, dizziness and pain.  In its earlier relapsing-remitting stage, MS is treated with chemo and immune system suppressants.  Dr. Wahls pursued the best and most aggressive treatment available.

Nevertheless, in 2003 her MS had developed into the secondary progressive variety.  At that stage, the treatment strategy is to slow the inexorable loss of function.  She used canes to walk.  Soon she was in a wheelchair almost all the time.

Wahls is a doctor.  She researched her condition.  But there are no treatments to reverse the loss of function, not even any clinical trials available for her to join.

So she went back to school, staying up at night after the rest of the family was in bed.  She studied the basic science of her condition and similar ones, Parkinson's, Alzheimer's Huntington's.

Then she designed her own treatment based on the basic science about why brain cells die.  She experimented on herself, developed a diet regime, tested potential food sensitivities.  She maintained.

This is Dr. Wahls in June, 2007.

She started working with a physical therapist to use neuro-muscular electrical stimulation, continued the diet modifications.  And then she got out of her wheelchair.

Over the course of that year, Wahls went from moving around on a scooter to walking with canes to riding a bicycle eighteen miles without assistance.

This is Dr. Wahls in October, 2008.

Today, Dr. Wahls is the one woman recovery movement for MS.  She is doing what people with secondary progressive MS don't do.  She is recovering.

I don't have MS.  I have another brain disease that began as remitting-recurring.  I tried what treatments were available.  My disease progressed to a chronic disabling condition.  Boy, do I wish I had gone to medical school.  It would be a lot easier to understand the research, figure out the basic science and develop a treatment plan that might make a difference for me.

Is it any wonder I find Dr. Wahls' story riveting?

I am glad I am not a one woman recovery movement for bipolar.  There are lots of us who are not satisfied with the limited life that our meds give us.  There are lots of us experimenting with our own treatment regimes, staying up nights reading the research, and learning from each other.

It turns out Dr. Wahls has learned some things that may aid our recovery, too.

Meet Your Mitochondria

All living things, including our bodies have tiny little maintenance workers inside our cells called mitochondria, which are busy supporting our cells doing the repair of the the wear-and-tear damage that naturally occurs each day.  Our DNA provides the blueprint for all the proteins and other biological components that need to be replaced on a regular basis.

If those little maintenance workers don't have all the proper nutrients, like amino acids, the correct minerals, and fatty acids, then they can't build according to the DNA blueprints.  Those nutrients are the building blocks that mitochondria in our cells need to keep our bodies healthy.  If those replacement molecules and structures get made incorrectly or not at all, our bodies begin to deteriorate.


Okay, this may come as a surprise to you.  But a long time ago these little critters (scientists call them organelles) swam inside the cells of living things.  Mitochondria live in our cells, like we live on the earth.  Except they are generally more useful to us than we are to the earth.

Minding My Mitochondria tells the story of how Terry Wahls overcame secondary progressive multiple sclerosis (MS) and got out of [her] wheelchair.  It is the story of what these little mitochondria critters do and what they need to do it well. 

The Essential Point

Mitochondria are the power plants inside our cells.  They take glucose molecules and convert them into adenosine tri-phosphate (ATP) -- think energy.

Many other diseases like asthma, chronic obstructive lung disease, hypertension, coronary artery disease, depression, obesity, bipolar disorder, and diabetes have all been shown to become worse as a result of mitochondrial stress and eventual failure.  Mitochondrial failure drives the development of diabetes, heart disease, lung disease, heartburn from stomach acidity, Alzheimer's, Parkinson's, many psychiatric disorders, and multiple schlerosis... Healthy cells are necessary to have healthy organs; healthy organs lead to healthier bodies and restored vitality.

The cells with the greatest concentration of mitochondria are in the brain, because the brain uses enormous amounts of energy -- unless you're sitting on the sofa, in which case your brain powers down.  So any of you readers who are concerned about the health of your brains, pay attention!

Our mitochondria need co-factors to facilitate the reactions that turn glucose into energy.  What are the co-factors?  The micronutrients in our food.  The Standard American Diet (SAD) is sorely missing in these micronutrients, making for sick mitochondria and resulting in a whole host of your favorite chronic diseases and mine. 

But you get these micronutrients simply by eating well.  Dr. Wahls applied the science of cell biology to an eating plan that helped her and can help others ensure adequate nutrition for these little critters on whom our lives depend.

Feeding Your Mitochondria/Healing Your Brain

So that is the basic message repeated over and over in each chapter of Minding My Mitochondria.  (For readers with cognitive deficits and/or fatigue issues, the repetition is helpful.)  You can eat your way to better health.


The early chapters teach the basic biology of brain cells, how brain cells are wired to each other, the role of myelin (insulation of neurons -- the issue of MS), how neurons communicate with each other.

Next Wahls describes how the chemical factory in our cells work, how cells get energy, and how mitochondria signal cells when to die or whether instead to become cancers.

Wahls includes a chart of the micronutrients needed for cell health, good food sources of each, and 100 recipes using some of the foods that are not part of the SAD -- Standard American Diet.

Cut To The Chase -- What To Eat

The typical message you hear is about what not to eat: salt, refined sugar, saturated fat.  Yeah, yeah, we all know that.   But it's only part of the problem.  Remember, if you are eating the SAD, you are not only overweight.  You are starving your mitochondria and yourself at the same time.

It's all about those micronutrients.  Wahls gets her lecture audiences to chant along with her: 

9 cups fruits and vegetables:

3 cups leafy greens
3 cups cruciferous vegetables
3 cups intensely colored.

That is the daily goal.

Okay, if you are the average consumer, you eat three cups of fruits and veggies per day max.  And you probably count peas.  Let me break it to you -- peas are not a vegetable for the purposes of nutrition.  Neither is the State of New York's state vegetable, corn.  Corn, for God's sake.  Peas and corn do not have the antioxidants or minerals you get from broccoli or spinach.  Nutritionally, they are starch.

But back to the goal.  Note that word, goal.  Work up to it, one cup at a time.

Here it is again:

Increase your daily fruit and vegetable intake, with the goal of 9 cups a day.

3 cups dark green leaves, such as spinach, Swiss chard, mustard greens... Count iceberg lettuce as water.  (60 grams = 1 cup)

3 cups cruciferous vegetables, such as cabbage, kale, collards, broccoli, the onion family.

3 cups intensely colored fruits and vegetables, such as beets, berries, oranges, your reds, your oranges, blues and purples.

There is more.  But that's a start.  Just do it.  Just start.  Today, eat a cup of cantalope for breakfast, a spinach salad for lunch, a cup of broccoli for supper, total of three.  Tomorrow, total of four.  Work up to two in each category.  Get to three later.  Just start.

What Else You Can Do For A Healthy Brain

Wahls' dietary recommendations include mushrooms, nutritional yeast, and nuts or seeds every day if possible, seaweed, dried kelp, and/or brewer's yeast, and more foods rich in omega-3 fatty acids: green leaves and the animals that eat them (less of grain-fed beef), wild fish, eggs from chickens that eat flax or bugs, flax oil, plus organ meats once a week.

The key balances addressed by the diet are GABA/glutamate and Omega 3/Omega 6 fatty acids.  We're looking to decrease inflammation and reel in those nasty free radicals.  You will learn lots about these balances in Minding My Mitochondria.  Big Pharma is pursuing exactly these issues in search of the next new wonder drug.  See my post from May 13, 2011, The Future is Bright -- For Whom?  I will come back to this topic, comparing Wahls and Big Pharma, at a later date.

Wahls includes in her program other self care recommendations that you have heard before, thirty minutes daily aerobic exercise to enhance serotonin and nerve growth factors, and thirty minutes brain exercises, puzzles, developing new cognitve and new physical skills to promote brain-derived neurotrophic factor production.

Supplements do not play a major role in the Wahls program.  While there is a mountain of evidence supporting her claims about the benefits of nutrients derived from food, it is not so clear that the body can use the nutrients in supplement form so well.  One exception is Vitamin D.  Vitamin D is free for the taking from sunshine.  But now that we all use sunscreen, Vitamin D deficiency is the newest health crisis in America.  Go figure.

Neuro-Muscular Electrical Stimulation

Parts of Minding My Mitochondria apply specifically to people with MS.  Wahls' most dramatic recovery happened when she started using electrical stimulation.  NMES is not a proven treatment for MS.  Remember, there are no proven treatments for secondary progressive MS.  However, it is recommended to treat symptoms that people who have MS have.  Wahls reviews the research behind it that led her to try her own experiment.  Now she is recruiting subjects for her efforts to replicate her results in others, by combining NMES with the diet. 

Synergy

So get real.  If NMES reverses damage to nerve cells, why bother with the heretofore fruitless exercise of trying to get grownups to eat their veggies?  It's easier to keep a drunk on the wagon than to change the food culture of the ever more obese Mc-Nited States of America.  Besides, you can bill for NMES.

One word.  Synergy.  Give the woman some credit.  She tried it.  When Wahls skips the electrical stimulation, she declines in function.  When she travels and can't eat the way she recommends, her symptoms return.  The different pieces of this program work together.

Which makes sense when you look at it from the perspective of the cell.

Our brain cells connect to each other through little arms called dendrites and axons.  It is likely, given what the literature says about exercise and the brain, that my additional exercise and/or NMES caused my brain to make more neuro-trophins, or brain cell growth factors, and the brain cells then received signals to grow more dendrites and axons.  That requires energy in the form of ATP and omega-3 fatty acids to build the myelin insulation around the new connections.  It makes sense that improving how the mitochondria generate ATP molecules (energy) is synergistic with exercise.  It is like adding an extra engine to your car.  You have more energy and more stamina.

The rate by which the brain cells respond to these messengers is likely therefore to be dependent, at least in part, on the availability of ATP generated in the mitochondria.  A diet containing more B vitamins (particularly riboflavin and niacinamide) coupled with more ubiquinone, or co-enzyme Q, should make it easier for mitochondria to make ATP and get rid of toxins generated in the cells.  That decreases the oxidative stress and makes for healthier mitochondria.  If the mitochondria are healthier, the brain cells are healthier, and healthier brains are better able to respond to brain-growth factors formed in response to the higher level of physical activity.

In other words, exercise (think of electrical stimulation as extreme exercise) makes the body produce more brain cell growth factors.  The body is designed to repair itself.  But to do the repair work, it needs the right material.  The wrong material actually increases the damage.  By contrast, good nutrition means that the mitochondria can do its job to produce energy, which can be used for repairing damaged brain cells.

It's road repair season in Iowa.  So here is synergy in road repair:  We want the roads fixed fast.  But there is no point in hiring more workers, unless you supply more asphalt.  There is no point in bringing more asphalt to the site unless you have the workers to lay it down.

What Else Is In The Book

The first sixty pages tell the story and provide the science behind it.  Wahls repeats concepts that may be new to the reader and uses real life analogies.  So don't worry about the science if you are not a science type.  She makes it understandable.

Also included: menus and recipes; charts that list nutrients, their appropriate doses, good food sources, and their function in brain (including symptoms of variety of chronic conditions caused by an insufficient supply); a list of abbreviations used; daily log sheets to help you track your food consumption and other self help practices; graphics of detoxification pathways, with the nutrients and foods that support detox; the riff on conventional and functional medicine that inspired my last week's blogpost; a glossary of terms; and references for the research studies that support Wahls' ideas.

Wahls needs more research subjects who have MS.  If she can replicate her own results in others, she hopes to get funding for more work that will move forward the science about MS.  The book includes her contact information.

Some versions of the 2nd edition were published without an index.  The one sold by Amazon does have the index, which is helpful if you want to look up something like aspartame, cognitive improvement, or cranberry chutney.

The font used in Minding My Mitochondria is APHont, developed by the American Printing House for the blind, to enhance reading speed, comprehension and comfort.  This accommodation for those who have MS and its vision difficulties makes the book easier to read and comprehend for people without vision difficulties, too.

But I Don't Have MS

Mitochondria don't have MS, either.  If they are malnourished, then their host (you, me) may have or be developing MS, or heart disease, lung disease, asthma, hypertension, depression, obesity, bipolar disorder, diabetes, Alzheimer's or Parkinson's instead -- all diseases in which sick mitochondria are implicated, all diseases for which your doctor has been telling you to eat better.  The market is bullish on chronic health issues these days.

We already know this stuff, that the way we eat is making us sick.  We read about this stuff in every magazine at every grocery checkout counter, where everybody is selling this week's magic berry or bean.

What I didn't know before I heard Dr. Wahls lecture was how all these magazine articles fit together, how exercise and nutrition play off each other at the cellular level, and how I really can help my brain heal with a long term, systematic change in how I feed my brain cells.

I will continue this ambling series on getting my brain back by exploring the realities of changing habits.

Meanwhile Remember, That's:

9 cups fruits and vegetables:

3 cups leafy greens
3 cups cruciferous vegetables
3 cups intensely colored.


To your health!



photos of Dr. Wahls used by permission
photo of mitochondria by NIH and in the public domain
graphic of neuron in public domain
photo of fruits and vegetables at Pike Place by Eric Hunt and photo of tablets by Pöllö, both used under the Creative CommonsAttribution-Share Alike 3.0 Unported license
flair from facebook
photo of road construction in Afghanistan taken by an Air Force employee and in the public domain
photo of french fries by Corpse Reviver and under the terms of the GNU Free Documentation License

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