Tunneling

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Texas is big.

So are its politics, at the very heart of it all.

I fell into mental health by sheer virtue of my own shared life experience for being psychiatrically diagnosed as living with Bipolar Depression in ’96.  At first glance, I think I didn’t do much about it, nor know much about it and, essentially, didn’t care enough to learn more at that time.  That was a different world for me then.  Little did I know that Texas was essentially very big geographically and we struggle with silos in our efforts… Texas is the 2nd largest state next to Alaska, alone.  The region — a wild territory — was entirely different than California, to me.

People are different here in Texas than elsewhere.  Speak differently.  The air is heady with allergens.  Its public community mental health system allocates the fewest amount of resources towards the problem.  At last glance, Texas ranks dead last in the U.S. + Territories. 53rd.  Why is a good question.  Nobody apparently seems to know why other than pointing a finger at the Capital and the Legislature.  Cowboys, Cowgirls. The Alamo. Sam Houston. The Bushes. You get the picture.

There are Texas leaders and efforts, programs, projects and initiatives.  Many heroes speckled in here and there up and down Texas from Galveston, to Corpus Christi, to Laredo, to El Paso to Amarillo, to Beaumont, to Tyler, to Nacogdoches, to Austin, to Houston, to San Antonio, to Dallas, to Fort Worth….

Let me name just a few and please forgive me if I’m leaving a few out of the picture.  They dot the gorgeous landscape like little white Christmas tree lights blinking on and off.

Texas Dept. of State Health Services, Assistant Commissioner Mike Maples, is a nice guy.  His brown spiked hair on top of a rather manicured appearance has everything to do with his performance.  It was Mike who helped coin “recovery and hope” in our State of Texas mantra for mental health transformation today.

His right hand man, Sam Shore, heads up MH and SA.  I first met Sam when I was coming out of my medication and ECT stupor that ran during the years of ’04-‘07 and while in graduate school at University of Texas at Austin when my academic advisor, a Dr. Randy Parker, Director of the UT Austin Rehabilitation Counselor Education, program encouraged me to seek out the US Psychiatric Rehabilitation Association and Boston University’s Sargent College Dept of Psychiatric Rehabilitation.  He gave me a few names to look into and kept saying to me, “… you’re resilient… don’t give up.”

Those few words gave me hope and I remember them.  I’d become active with USPRA National before I found out there was a Chapter in Texas.  Thanks to USPRA, my recovery was started.  It was the first group I tripped over and Sam was a nice guy to me and my becoming active with USPRA National and then USPRA Texas is due to Sam’s encouragement.

Sam’s right-hand, Wendy Latham, is truly brilliant and the likely brain child and Project Manager to our state’s technical, training and assistance center, learning communities and with via HOPE Texas Mental Health Network’s Anna Jackson and Training lead, Neal Nored, they round out a fine team.  I first met Wendy several years ago when she was a relative new comer to mental health from prevention around diabetes and her transition was dynamic, if not immediate.

My initial luncheon meeting in ’05 for USPRA Texas, when I began sorry attempts to integrate back into my community, brought Sam Shore, Shannon Carr, and Mike Halligan (Texas Mental Health Consumers E.D., Hero and Mentor) who sat beside me and speaking quietly to me with side-comments that made me smile.  You must bear in mind that after my manic episode of ’03-04, I was frankly, a mess for a good 3-4 years?

My daily regimen included rising after 10 where I’d started my night before around 7 laying in bed with pillows on top of my head moaning and hating life.  That I made it through graduate school depended largely on my partner having total faith in the fact that I would eventually see the light at the end of the tunnel.  I had 1 friend who stayed in touch with me when everyone else stayed away and I preferred it that way.  I was miserable in my misery and wonder.  I had Conrad, my Sun Conure, who made me happy and who I’d talk to and play with throughout the day.  I didn’t need anything or anyone else. My despair held me with a steel grip, and I ideated, meds not helping, frquently sobbing in private 1:1 counseling sessions, and sleeping most of my days away.  I had no Hope.  I didn’t have peers around me nor in my life.

At home, I read Kay Redfield Jamison’s books hungrily and they were sweet like candy to digest and I gorged on her writing and work trying to absorb the concepts and models. I somehow wrote multiple miserable APA papers during my master’s program, and tried to understand and learn what psychiatric rehabilitation was all about… some of it made sense, most of it didn’t.  In between beginning ECT and ending ECT, I was beginning to become angrier and angrier over my life situation and graduated from UT Austin in ’06.  I’d applied to the UT Austin PhD RCE program which was by that time, struggling with RSA monies, had a full stable of doctoral students and Parker was retiring, so I entered another doctoral program in ’07 to not lose time.  Unfortunately, UMDNJ’s doctoral program was just a dream at that time and Boston University’s doctoral program closed.

In my first attempt to volunteer with local providers, I remember meeting a few NAMI Texas workers including Diana Kern and Joe Lovelace to begin volunteering.  They stuck me at the copy machine and I lasted an hour or two, frustrated.  I quit.

I went to NAMI Austin and volunteered to help with that year’s WALK.  My agoraphobia got the best of me then and I quit that, too.  My sole friend who stuck around, Marcie, walked with me that year.  It’s a drug blur.  I had gained 90 pounds from the psych meds I was on and my photos of medications lined up from left to right nearly six inches twice a day.  At one point, I stumbled through my days on +1200 mg of Seroquel, managed to get myself into 3 car wrecks, totaling one and walked away from all of the accidents. My Ducati Monster 620i ended up sliding down the street between my legs and torn up jeans… the fast, beautiful bike was never ever damaged.

I also discovered DSBA Austin, DBSA National and DSBA Texas meetings but sitting in a group recalling war stories did nothing for me either.  I met Eileen Rosen and was hired for a few hours when she was E.D., which was frankly, my first and only job where I was hired to work in Texas mental health services.  I quit on my 1st day there also.

I focused on USPRA Texas because I could operate alone and do it well enough.  Sam stuck around and at the national level, Peter Ashenden, Ev Bussema, Marcie Granahan, Laura Mueller, Lisa Razzano, Marie Hamilton and little by little stuck my toes into the frigid water and started to learn about psychiatric rehabilitation formally and had an avenue with USPRA National to grow.  ECT had deadened my pain but also managed to kill my short-term and long-term memory.  I started my doctoral program this way, interestingly enough.

I realized that hanging out at The SHAC in Austin had its’ benefits.  I attended DSBA meetings infrequently and ran into Eileen Rosen here and there and we were cordial at best.  Shannon Carr and Mike Halligan had befriended me and so that meant I had a growing handful of contacts.

Life went on this way until 2007.  I became a reasonably familiar face to Diana Kern and started to attend USPRA National conferences and postered at Boston University’s Innovations Conference in ’08 and managed to ante up the $1000 to take the DBSA Certified Peer Specialist certification with Ike Powell, Larry Fricks and Beth Filson.

I remember seeing Nancy Speck and Sam Shore was there on the 1st day.  I met William Anthony at the 2008 Boston University Innovations Conference and told him that to me, he was a rock star.

The Texas CPS class during November in ’07 that Eileen Rosen organized changed my life.  I met Jan DeWitt who I count as a wonderful friend and confidant today.  There was a group of us who began to take 1 class at a time, and I begged Mike and Jo Halligan to offer a Peer Facilitation class and took my 1st WRAP class in ’08.   It didn’t particularly help, but it led to many other trainings, classes and I learned, and kept coming back.

In ’08, SAMHSA issued a Transformation RFP and NAMI Texas and Mental Health America of Texas, along with DSBA Texas and the Texas Mental Health Consumers group stepped up.

That grant was awarded and TTAC (via HOPE Texas Mental Health Resource Network) was borne from it.  Mike Halligan had become a Mentor to me by then and I’d become reasonably familiar with Eileen Rosen at that point, and met Robin Peyson.  Lynn L. Clark was only a very official name on letterhead.  I started the Texas Adhoc Workgroup and Chaired it in ’09, the Texas Consumer Network until ’10 when it was hijacked into the Texas Seed Group and an eventual group struggling to incorporate today.  Halligan and I commiserated with Rosen about the eventual development of peer services and network.  I met Dennis Bach, Director of via HOPE Texas Mental Health Resource Network (then pre-brand called TTAC), Michele Bibby (then at DBSA Austin forming East Austin groups), hung out and dreamed with Janet Paleo, Anna Gray of PROSUMERS in San Antonio, met the UT Austin Hogg Foundation for Mental Health’s heroes, Tammy Heinz and Stephany Bryan.

I continued with USPRA Texas and we somehow pulled out a 2010 and 2011 Windows to Wellness Conference with Shore and Bach’s help.  That first conference produced the first Learning Community and I met astonishing Anna Jackson.  My good friends Marcie and Jan stuck by my side always.

A Texas Certified Peer Specialist certification and process was born at DSHS and via HOPE in ’09 with Larry Fricks assistance.  I’d met a handful of other rock stars along the way… Steve Harrington, E.D. of the National Association of Peer Specialists had befriended me and we smoked cigars together. Pat Nemec, Lyn Legere were nice to me. I continued with my PhD studies and had changed study from Health Services to Epidemiology, got awarded a few scholarships in it, then switched over to Public Health.  I met Mark Salzer at U Penn, now at Temple, and now an External Committee Member on my dissertation.

I learned how to Facebook during testing & outreach with AIDS SERVICES OF AUSTIN on Jennifer Herrera’s Prevention Team, and eventually got to this point.  I met Peggy Swarbrick and Dan Fisher at the 2010 Conference in Austin.

If I have anything to tell anyone who is struggling, all I have to say is keep with it. I know where you are because I was there too.  This particular blog is not an apology for my disease.  I realize I’ve managed to offend some readers and I am learning you also.

Today, my goal is to complete my dissertation under a year working with Mark Salzer and my committee, finish 3 residencies (Atlanta, Los Angeles, Dallas) and just be a nice person to others coming from a similar place.  Texas will always be here.  So will USPRA National.

I guess what this blog amounts to is just a bit of information about who I am, what I like to do, how I got to this point in my recovery as a c/s/x, Peer, CPS and Provider  and what I’m up to today…  I’m racing down the tunnel at the other end to make up for lost time.  USPRA (US Psychiatric Rehabilitation Association) National was always there for me and for this I’m grateful.  They’re a fantastic bunch who really care.  I remain the Chair of USPRA Texas and my term runs out this year.  My wish is that it sustain the work which we have created together for the state.   USPRA’s Multicultural Committee and GLBT Subcommittee awarded me an award for excellence or something like that at last week’s National USPRA Conference in Minneapolis.  I wasn’t able to attend, but wanted to say thank you publically.  Thank you for recognizing that my kindness is NOT a weakness, but who I am more than not.

Working for and with Lena Caballero, Founder & CEO, The Hope Concept Wellness Center and as State Director for The HOPE Project is like working all week on a gorgeous laid-back Sunday with my lover, my woman, my new friends, colleagues, peers, CPS and family.  My dream is to have a Health Home by 2013 with a local FQHC for our communities in Texas.  Integrating behavioral and physical health utilizing peers as primary care providers WORKS.

We have our first Annual National Conference (Wellness Solutions 1.0: Uncensored Innovation) in Philadelphia this year on September 4-5 at the Sheraton on Society Hill in the City of Freedom.  Following is Steve Harrington’s NAOPS National Conference which Lena, I and our entire Team will attend.  When we get back, we’re hosting Alicia and John Nash for “A Beautiful Partnership: Alicia and John Nash” conference, symposium and benefit for my friends over at PLAN of Central Texas.  Working with Dr. Cecile DeWitt is a dream come true… Even though she’s in the Paris area at her Institute for Physics, I spoke with her this morning and she continues to sustain my own personal hope.  The Hope Concept is hosting “A Beautiful Mind” screening on several screens at the Alamo Drafthouse Cinema in Austin (Anderson Lane location) on Sunday, September 16 @ 2:00 PM CST.  Tickets go on sale 2 months before the screenings to be fair.  ALTERNATIVES ‘2012 proves to be excellent, I have no doubt.  Last year’s ALTERNATIVES 2011 the biggest delegation was the State of Texas thanks to the East Texas Collaborative, the Hogg Foundation, via HOPE and peers, CPS, c/s/x who attended.  We had over 45 in attendance.

My interest currently is to see another dream…. A CPS National Certification, accreditation and national Peer Registry be developed to sustain our exploding Peer Workforce in the US.  Am also interested in and recognize the need to thank our leaders who have worked so hard to this point…. We must continue to build, grow and sustain our peer leaders to insure our survival.  I’d like to do an event and venue around celebration, giving thanks and honoring these individuals and think I’ll do something in November around Thanksgiving.

Remember this, in closing:

 

“We the willing, led by the unknowing, are doing the impossible for the ungrateful.  We have done so much, with so little, for so long, we are now qualified to do anything, with nothing.”    Mother Teresa of Calcutta

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

3 COMMENTS

  1. You mention that, besides having John Nash and his wife speak to your group, you plan to screen the film, “It’s A Beautiful Mind” – which ostensibly details John’s life up to the time he became a Nobel Prize winner.

    Of course, you must be aware that the film was based on a book (a Pulitzer Prize-nominated biography by the same name).

    The book’s author had been genuinely interested in depicting the truth of John Nash’s life; on the contrary, the producers of the movie were not. They were interested in giving us a highly visual and dramatic Hollywood blockbuster – by creating a story based on the book, which would be lapped up by the general public and remain, all the while, agreeable to mainstream thinkers, in psychiatry.

    That is why, though John never suffered any visual hallucinations (only auditory ones), much of the movie, nevertheless, takes the liberty of depicting him suffering unbelievably vivid, visual ‘waking dreams’ – inhabited with highly compelling imaginary people.

    In my opinion, that’s an unconscionable departure from John’s story, completely misleading viewers regarding the nature of his inner life; it lends the notion that John was prone to visually ‘encountering’ imaginary human beings in his environment – thus, encouraging viewers to presume he was, perhaps, ultimately, incapable of knowing who was (or was not) an actual/real, living/breathing person.

    Had such confusion characterized his experience, in all actuality, he might have been suffering a far more troubling condition…

    After all, it’s conceivable: one who feels persecuted while failing to know, that real people are fully real, could wind up unintentionally harming those people. (By the way, I believe far more ‘mental health’ professionals than “psych-patients” suffer such potentially hazardous delusions – as they fear signs of ‘rebellion’ from certain “patients” and view such signs as personal affronts – and fail to see such “patients” as fully real; subsequently, they come to treating certain “patients” as objects, to be casually stuffed with a toxic brew of ‘pacifying’ meds.)

    So, about the movie: In at least one interview, John Nash himself has said, “I don’t regard it as giving accurate information of me, as a person.” Pointedly, he’s explained, it, “suggests that after many years of mental illness, when I recovered, I still depended on some medicine; whereas, in fact, when recovering from insanity and irrationality, I do not depend on medicine.”

    Of the Pulitzer Prize-nominated book, by Sylvia Nasar, upon which the movie was based, Nash added, “at the end of it, the question of medical drugs, it gives the truth.”
    In Wikipedia, we read:

    “Although he sometimes took prescribed medication, Nash later wrote that he only ever did so under pressure. After 1970, he was never committed to the hospital again and he refused any medication. According to Nash, the film ‘A Beautiful Mind’ inaccurately implied that he was taking the new atypical antipsychotics during this period. He attributed the depiction to the screenwriter (whose mother, he notes, was a psychiatrist), who was worried about encouraging people with the disorder to stop taking their medication.”

    Emphatically: Regarding that key discrepancy in the movie, Nash has concluded, meaningfully: “the [screen writer] for the movie, his mother was a psychiatrist.”

    That is to say, John Nash’s own truth in reality played second fiddle to a Hollywood screen writer’s needs to promote his own mother’s professional paradigm – as she was a conventionally trained psychiatrist who, presumably, would not have appreciated her son broadcasting a story of recovery, from so-called “schizophrenia” …without psychopharmacology.

    And, by the way, according to Wikipedia:

    “Nash has said, ‘I wouldn’t have had good scientific ideas if I had thought more normally.’”

    “He does not see a categorical distinction between terms such as schizophrenia and bipolar disorder.”

    And,

    “Nash has suggested hypotheses on mental illness. He has compared not thinking in an acceptable manner, or being ‘insane’ and not fitting into a usual social function, to being ‘on strike’ from an economic point of view. He has advanced evolutionary psychology views about the value of human diversity and the potential benefits of apparently nonstandard behaviors or roles.”

    Robert Whitaker has detailed that the book’s author, “concluded that Nash’s refusal to take drugs ‘may have been fortunate’ because their deleterious effects, ‘would have made his gentle re-entry into the world of mathematics a near impossibility.’”

    I.e., most likely, Nash would never have become a Nobel Prize winner had he accepted ‘medicine’ as his way to recovery.

    Whitaker concludes (quite rightly, I think): “John Nash’s recovery from schizophrenia is a moving story. But we are not well served when the movie fibs about the anti-psychotic drugs’ role in his recovery. If anything, his story should inspire us to reconsider anti-psychotics’ long-term efficacy with an honest, open mind.”

    _____________

    John Nash interview ( on Youtube )
    http://www.youtube.com/watch?feature=player_embedded&v=UiWBWwCa1E0

    Robert Whitaker ( opinion/editorial on USAToday.com ) http://www.usatoday.com/news/comment/2002/03/04/ncguest2.htm

    John Forbes Nash, Jr. ( Wikipedia )
    http://en.wikipedia.org/wiki/John_Forbes_Nash,_Jr.

  2. Great information on Nash and his experience/account of his experience.

    Re: Tunneling

    “If I have anything to tell anyone who is struggling, all I have to say is keep with it. I know where you are because I was there too.”

    Thank you for that. I find mentors all around, people telling their stories and working effectively.

    I am very much in the tenuous early stages of my recovery. Niches don’t always quite fit and I’m not always sure where to put my energy. I tell myself that, considering that this time last year, I was still foam-brained with antipsychotics and reeling from psychiatric trauma, I’m doing pretty well. I am, after all, still alive.

    Sometimes, every day stills feels like fragile crossroads, full of possibility in all directions. I am still finding my feet.

    It was encouraging to read of your navigations. Thank you.

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