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

On the Road Again With NAMI Walks

In honor of Earth Day, this is the second annual Blog Post Recycling Day.  I think it is the second annual Blog Post Recycling Day.  Somebody declared one last year, and I recycled then, but I haven't actually seen anything about it this year.  Maybe because my Facebook friend who posts that kind of stuff is in church today?

Anyway, it's timely -- just one week from Johnson County, Iowa's NAMI Walk.  So my recycled blog from a month ago comes with one more plea to contribute to the organization that has contributed so much to me, making my contribution to you, dear readers, possible.

Please, please, please, click on the button to

To find out why, read:

 

Friday, March 25, 2011

On The Road Again -- NAMIWalks 2011

It's that time of year again.  Across the country people with mental illness, our friends, family, care providers, even law enforcement officials are pulling on our walking shoes to raise money for NAMI -- National Alliance on Mental Illness.  Last year soldiers in Iraq pulled on their hiking boots and their 40 lb. packs and ran while NAMI San Diego walked.

So what is this all about?  Here, my friends, is my testimony.

A couple years ago, I wrote a post on holiday gift giving for your favorite normal.  I asked my spouse, What would be a good present for the family member of somebody with a mental illness?

She didn't even look up from her computer.  Without missing a beat, she said, A cure.

A cure.  I know that mental illness is a family illness.  The whole family lives with it.  But her words caught me.  What she wanted was for both of us, a cure.

It's something she can't give me.  I can't give her.  My doctor can't.  You can't give it to the person you love.

We can, however, learn to manage symptoms.  We can claim the very best lives we can live.  We can live in recovery. 

Peer To Peer Program

I learned about recovery from NAMI, from their Peer to Peer program.  P2P is a ten-week course taught by people with a mental illness for people with mental illness about what we do after the doctor hands us a diagnosis and a prescription.

P2P teaches us how to live.  It is why I bust my butt for this walk.  It's not a cure.  But it's a lot.

That first class, I heard that I am not alone.  The very first note I took said, More unites us (our experiences) than divides us (our diagnoses.)

Next P2P showed me the immense dignity of those who live with mental illness.  It made me proud to know and be known by and be in community with others who live with mental illness.

It supplied tools like dialectical thinking, mindfulness, relapse prevention planning, techniques for emotional regulation and getting a good night's sleep, strategies for staying safe and coping with hospitalization.

P2P gave me something to do when medication didn't give me a cure.

And it opened for me a path into my future.  It reminded me that I am an advocate.  That is who I am.  I still have an identity, after all

So I bust my butt for this walk.  It is how I give back.

NAMI Walks

Now, the first time I did a NAMI walk, to tell the truth, I was scared.  Would it be grim?  A protest and a wailing against what is not possible, what we have lost and what we have to face?

If you have walked for NAMI, you are laughing here.  You know a NAMI Walk is so -- not grim.  It's a party!  With balloons and babies and dogs, music, belly dancers, football players, great food.  In Johnson County, Iowa, the Old Capitol City Roller Girls lead off the walk.  In San Diego, you are likely to hear a didgeridoo.

Bottom line, a NAMI walk is a gift.  It's a public demonstration to our families, friends, politicians, our neighbors, coworkers, the people in our places of worship, the viewing public -- a public demonstration that we are here for each other.  We take a break from all that wailing.  And throw a whale of a party.

At the same time, we raise funds for the programs that help us help ourselves and one another, the things that nobody else will pay for, for people who have fallen off the bottom of the budget.  NAMI does the stuff that makes a difference the day after the doctor hands us a diagnosis and a prescription.

Team Prozac Monologues debuted last year, with results that were not too shabby.  We raised $2640.  Mazie's sponsors contributed $250 toward that total.  Helen is walking in her stead this year.  Sponsors can contribute in Mazie's memory here.

Why I Walk

Me, I am walking for everybody who used to be on a three month wait list for an intake interiew at the local community mental health center; but this year that became a six month wait list at the center the next county over.  I am walking for everybody who used to  be on a four year wait list for sheltered housing; but this year the shelter shut down.

I am walking for those who are not crazy enough to pull out a gun and get the sheriff to buy their meds; they're just crazy enough to sleep in the alley behind the homeless shelter after they have stayed their ninety-day limit.

I am walking for family members who go to work wondering what is happening at home with their loved ones, now that the day program is closed.

I am walking for the resident on call in the ER who has to send home the merely suicidal, while the flaming psychotic waits for 36 hours in the hallway for the next available bed.  And for the newly diagnosed and dazed person who just got released with not enough meds to make it through the weekend, to make room for the flaming psychotic.

I am walking for the young people I know whose brains are even now being damaged in a war that we got into for oil.

I am walking in gratitude for law enforcement personnel who are trying to figure out how to do this new job, and need new training, to take care of those who have been discarded so that the very richest people in the world can get a tax cut.  I am walking in prayer for those who get caught up in somebody's suicide by cop.

This would be the place to note that the co-chairs of Johnson County's NAMI Walk this year are Janet Lyness, County Attorney, and Lonnie Pulkrabek, County Sheriff.  Props to them and to the competition between their two teams!

I did say that the Walk would be a party.  So even while I am angry that so much suffering comes not from the illness, but from the neglect, I will nevertheless celebrate those who do what they can do.  (That sentence would be an example of dialectical thinking, by the way -- see above, the curriculum of Peer to Peer.)

I am walking in wonder and amazement at the strength of the human spirit.  I am walking in deep appreciation for those who have helped me personally, for peer teachers, support group members, care providers, friends and family.

I will be walking with tears in my eyes, that my son and daughter-in-law will travel from Madison to Iowa City to walk beside me.

I am walking on April 30, 2011 in Iowa City, Iowa for all these reasons.  And I am walking also for you, dear reader.  I ask you to support me in this walk.  Click here to make your tax deductible, safe and quick contribution to NAMIWalks Johnson County.

Closing Shot

There are many versions of this song on Youtube.  I chose this one, despite the credits that run over it, because the ragged bunch of friends who sing it, some not sure of the words, illustrate the point.  We are a ragged bunch.  And pretty wonderful because of it.

The Scream by Edvard Munch in public domain
photo of Team Prozac Monologues by Judy Brickhaus
photo of homeless vet by Matthew Woitunski and used under the Creative Commons licencse
photo of New York City police officer by See-ming Lee, copyrighted and used by permission

On The Road Again -- NAMIWalks 2011

It's that time of year again.  Across the country people with mental illness, our friends, family, care providers, even law enforcement officials are pulling on our walking shoes to raise money for NAMI -- National Alliance on Mental Illness.  Last year soldiers in Iraq pulled on their hiking boots and their 40 lb. packs and ran while NAMI San Diego walked.

So what is this all about?  Here, my friends, is my testimony.

A couple years ago, I wrote a post on holiday gift giving for your favorite normal.  I asked my spouse, What would be a good present for the family member of somebody with a mental illness?

She didn't even look up from her computer.  Without missing a beat, she said, A cure.

A cure.  I know that mental illness is a family illness.  The whole family lives with it.  But her words caught me.  What she wanted was for both of us, a cure.

It's something she can't give me.  I can't give her.  My doctor can't.  You can't give it to the person you love.

We can, however, learn to manage symptoms.  We can claim the very best lives we can live.  We can live in recovery. 

Peer To Peer Program

I learned about recovery from NAMI, from their Peer to Peer program.  P2P is a ten-week course taught by people with a mental illness for people with mental illness about what we do after the doctor hands us a diagnosis and a prescription.

P2P teaches us how to live.  It is why I bust my butt for this walk.  It's not a cure.  But it's a lot.

That first class, I heard that I am not alone.  The very first note I took said, More unites us (our experiences) than divides us (our diagnoses.)

Next P2P showed me the immense dignity of those who live with mental illness.  It made me proud to know and be known by and be in community with others who live with mental illness.

It supplied tools like dialectical thinking, mindfulness, relapse prevention planning, techniques for emotional regulation and getting a good night's sleep, strategies for staying safe and coping with hospitalization.

P2P gave me something to do when medication didn't give me a cure.

And it opened for me a path into my future.  It reminded me that I am an advocate.  That is who I am.  I still have an identity, after all

So I bust my butt for this walk.  It is how I give back.

NAMI Walks

Now, the first time I did a NAMI walk, to tell the truth, I was scared.  Would it be grim?  A protest and a wailing against what is not possible, what we have lost and what we have to face?

If you have walked for NAMI, you are laughing here.  You know a NAMI Walk is so -- not grim.  It's a party!  With balloons and babies and dogs, music, belly dancers, football players, great food.  In Johnson County, Iowa, the Old Capitol City Roller Girls lead off the walk.  In San Diego, you are likely to hear a didgeridoo.

Bottom line, a NAMI walk is a gift.  It's a public demonstration to our families, friends, politicians, our neighbors, coworkers, the people in our places of worship, the viewing public -- a public demonstration that we are here for each other.  We take a break from all that wailing.  And throw a whale of a party.

At the same time, we raise funds for the programs that help us help ourselves and one another, the things that nobody else will pay for, for people who have fallen off the bottom of the budget.  NAMI does the stuff that makes a difference the day after the doctor hands us a diagnosis and a prescription.

Team Prozac Monologues debuted last year, with results that were not too shabby.  We raised $2640.  Mazie's sponsors contributed $250 toward that total.  Helen is walking in her stead this year.  Sponsors can contribute in Mazie's memory here.

Why I Walk

Me, I am walking for everybody who used to be on a three month wait list for an intake interiew at the local community mental health center; but this year that became a six month wait list at the center the next county over.  I am walking for everybody who used to  be on a four year wait list for sheltered housing; but this year the shelter shut down.

I am walking for those who are not crazy enough to pull out a gun and get the sheriff to buy their meds; they're just crazy enough to sleep in the alley behind the homeless shelter after they have stayed their ninety-day limit.

I am walking for family members who go to work wondering what is happening at home with their loved ones, now that the day program is closed.

I am walking for the resident on call in the ER who has to send home the merely suicidal, while the flaming psychotic waits for 36 hours in the hallway for the next available bed.  And for the newly diagnosed and dazed person who just got released with not enough meds to make it through the weekend, to make room for the flaming psychotic.

I am walking for the young people I know whose brains are even now being damaged in a war that we got into for oil.

I am walking in gratitude for law enforcement personnel who are trying to figure out how to do this new job, and need new training, to take care of those who have been discarded so that the very richest people in the world can get a tax cut.  I am walking in prayer for those who get caught up in somebody's suicide by cop.

This would be the place to note that the co-chairs of Johnson County's NAMI Walk this year are Janet Lyness, County Attorney, and Lonnie Pulkrabek, County Sheriff.  Props to them and to the competition between their two teams!

I did say that the Walk would be a party.  So even while I am angry that so much suffering comes not from the illness, but from the neglect, I will nevertheless celebrate those who do what they can do.  (That sentence would be an example of dialectical thinking, by the way -- see above, the curriculum of Peer to Peer.)

I am walking in wonder and amazement at the strength of the human spirit.  I am walking in deep appreciation for those who have helped me personally, for peer teachers, support group members, care providers, friends and family.

I will be walking with tears in my eyes, that my son and daughter-in-law will travel from Madison to Iowa City to walk beside me.

I am walking on April 30, 2011 in Iowa City, Iowa for all these reasons.  And I am walking also for you, dear reader.  I ask you to support me in this walk.  Click here to make your tax deductible, safe and quick contribution to NAMIWalks Johnson County. 

Closing Shot

There are many versions of this song on Youtube.  I chose this one, despite the credits that run over it, because the ragged bunch of friends who sing it, some not sure of the words, illustrate the point.  We are a ragged bunch.  And pretty wonderful because of it.

The Scream by Edvard Munch in public domain
photo of Team Prozac Monologues by Judy Brickhaus
photo of homeless vet by Matthew Woitunski and used under the Creative Commons licencse
photo of New York City police officer by See-ming Lee, copyrighted and used by permission

NAMI Walks -- We All Win

This is my second year for the NAMI Walk Johnson County, Iowa.  It's how people across the United States raise money for the National Alliance on Mental Illness, an organization whose mission is support, education and advocacy with and on behalf of people with mental illness and their families.

National Alliance On Mental Illness

I became passionate about NAMI when I learned about its origins.  Once upon a time, not so long ago, the holy writ on schizophrenia was that it was caused by overprotective mothers and disinterested fathers.  Wow.  In 1979, a bunch of these mothers started to push back.  They organized and demanded better research, better treatments, better treatment.  Would there ever be any progress in the world if it weren't for uppity women?  A new documentary, When Medicine Got It Wrong tells the story, coming soon to a PBS station near you.

NAMI has grown into a national program, built on local chapters.  It fights stigma.  It advocates for funding of services, research and rights.  It provides information about mental illnesses and medications.  It offers a variety of educational programs and services.

Peer To Peer

Prozac Monologue followers read with some regularity what I have learned from NAMI's Peer to Peer program.  In Peer to Peer, those who have a mental illness and are in recovery help others learn about recovery, living to the fullest while managing a mental illness.  I drove (my wife drove -- my meds won't let me drive anymore) 120 miles round trip every week for nine Iowa winter nights so that I could attend this program.  It was worth every mile.

Make A Difference

So here's the deal.  Every year NAMI raises money through local Walks.  My local chapter will walk on May 8th, rain or shine.  Last year was my maiden voyage into NAMIWalks.  I went with some trepidation, wondering just how bleak and weird a walk for mental illness could be.  Instead, I discovered a registration process that reminded me of summer camp, belly dancers leading the warm up, pep talks from the Hawkeye football team, a balloon arch, kids, dogs, food, t-shirts and more t-shirts, displays that kept falling over in the breeze, and chalk drawings along the trail made by the Girl Scouts.  It was a party!

I did not do a shabby job raising funds my first time out.  I knew I would do well, because I know my friends.  This year I decided to co-chair a team called, wouldn't you know, Team Prozac Monologues!  And right there, on the name, is where you can go to support my team.  Giving online is safe, easy, fast and tax deductible.

Team Prozac Monologues is about halfway to our goal so far.  Any amount you can give is important.

And as Hoops and Yoyo say,