Didgeridoo Diplomacy - Honking For Mental Health Awareness

I've shaken off a bad cold just in time to head off to Chicago first thing in the morning to the NAMI national convention. This will be my sixth NAMI convention. I attended my previous ones as a mental health journalist. This time I will be going as a representative of NAMI San Diego, where I serve on the board. But I will also be taking a lot of notes, so you can look forward to two or three road blogs. Plus, listening to patients and family members always results in aha! moments that inform all my writing.

My last NAMI national convention was in 2007, which occurred in San Diego about seven months after I arrived here in southern CA, about four months after I acquired my first didgeridoo. Trust me, didgeridoos make sense in California. So it was that I didn't give a second thought to taking my "Big Boy" didge to the convention. It didn't matter that I couldn't really play it - I could always honk for mental health awareness.

Big Boy is the size of an Alp horn (think Ricola), much larger than standard didges. No sooner did I show up than people were crowding around me, asking me what is that thing and to play it for them. Fortunately, the convention took place in a resort-type hotel, where a lot of the networking got done in the outdoors. That still didn't stop me from honking the thing indoors. Total strangers, old friends, featured speakers, NAMI bigwigs, my strategy was the same - honk my didge.

The picture you see is me at the 2007 NAMI convention, taking my didge to the talent show (sorry about the beached whales). A NAMI photographer snapped it, and it appeared on the NAMI website a day or two later. Back then, of course, I was an outsider, a lone visionary, a voice in the wilderness - a man, a dream, a didgeridoo.

Kind of hard to imagine that four years later, but I'm jumping ahead.

Later that summer, I took my "Little Boy" didge to the DBSA national conference in Orlando. Little Boy is nowhere near the attention-getter as Big Boy, but at least I could travel with it. I also brought Little Boy with me to a state NAMI convention in Riverside, CA six weeks later. At both these venues I was a break-out speaker and incorporated the didge into my talks.

Actually, the didge had nothing to do with what I was talking about, but my honking interlude did make sense in a certain nonlinear fashion.

By now, I had resolved to take my didge everywhere I went, but this was also the time I decided to severely cut back on my travel. Rumor has it that I was short-listed for the Nobel Peace Prize for my humanitarian gesture.

We skip ahead to 2010. I had been on the board of NAMI San Diego for about nine months. I was helping plan our annual Walk. I happened to say I will bring my didge to the Walk. Julie, a volunteer, chimed in: "And I will bring my drum." That's how great ideas are born. Julie introduced me to a drum circle. Fortunately, by this time, I could do more with my didge than just honk it. In no time, I was a drum circle regular. At our next year's Walk, we had a group of drummers (and me) set up at a key intersection on the Walk. (Check out the Walk video in the right column.)

Things only took off from there. One of our drum circle regulars, Jon, happens to be the chief psychologist at a large treatment center here in San Diego. He also has a well-deserved reputation for his work with vets and PTSD. It just so happened in May he organized a Drumming Out Stigma event sponsored by the county. The county mental health big cheese and some lesser cheeses were there. So were individuals from the local club houses and others.  I was there with Big Boy and Little Boy. I stayed mainly with Little Boy while some school-age girls made cool animal noises into Big Boy.

I happened to bump into the county big cheese two times since then, but here's the kicker: The other week, at a small NAMI San Diego function, I got into a conversation with a woman, who informed me that it was her girls who were making noises into Big Boy. By now, I am introducing myself as the didgeridoo representative on the NAMI SD board. After I get back from Chicago, at Jon's invitation, I will be joining him and some drummers at an annual vets awareness event.

Now to Chicago and the NAMI national convention. Traveling to Chicago was a last-minute decision, so I didn't even look at the program until two weeks ago. Of course, they're having their usual talent show, but also - drum roll please - they're having a drum circle!

A man ahead of his time, a man of his time. See how persistence pays off?

When Medicine Got It Wrong

On Saturday morning, I attended a NAMI San Diego screening of Katie Cadigan's gut-wrenching documentary, "When Medicine Got It Wrong."

Boy, did they ever. Back in the bad old days (actually, we are still deep in the bad old days), psychiatry blamed schizophrenia on bad parenting, a view that persisted well into the 1980s. The villain of the piece was the "schizophrenogenic" mother, one who committed the crime (in apparent complicity with the disinterested father) of being overprotective toward her child.

Practically on a whim, kids could be legally separated from their parents and locked away for the rest of their lives. By some logic way too crazy to comprehend, it was considered far more therapeutic to consign these kids to the hell holes of state institutions than keep them with their families.

Parents were treated with outright hostility by those who should have known better. One parent in Cadigan's film recalls being told by a hospital staffer that she was the reason her kid was in there. Another parent recalls a psychiatrist telling her kid, in her presence, that it was okay to express his hostility to his mother. If psychiatrists could not find anything wrong with the parents, by God, they were going to find something wrong with them, anyway.

One parent only half-jokingly remarked that "One Flew Over the Cuckoo's Nest" got it all wrong. There was only one Nurse Ratched in Cuckoo's Nest. In real mental hospitals, there were many Nurse Ratcheds.

During the 70s, parents started to get together and compare notes. Then they began organizing. They got in the face of mental health boards and politicians. They were told to behave. They did not. They refused to take no for an answer. This was the beginning of NAMI. Literally, NAMI started out as a kitchen table enterprise. Kitchen tables in California, kitchen tables in Maryland, kitchen tables in Wisconsin ...

Then the people from these kitchen tables banded together and went national. Slowly, the parents began making headway. They found allies among the few enlightened psychiatrists of the day. They helped close down the institutions, they promoted brain science and biological psychiatry, they fought for humane treatment and services for their kids. They moved mountains.

Alas, the law of unintended consequences proved a far more formidable obstacle. Their kids were released into the streets, with no services. The jails and prisons became overcrowded with the mentally ill. And biological psychiatry has yet to deliver on its bright promise.

There has been a generational transition. The film shows a sister as the caregiver for her brother. She has taken over the responsibilities from her deceased mother. The mothers and fathers in the film - unsung heroes, founders of NAMI - are getting on in years. Their kids - well into middle age - are still struggling. We see the early home movies and photos - young kids, laughing, clear eyes, their lives ahead of them. We see present day clips - grizzled adults, thousand-yard stare in their eyes, but with a small flame flickering.

The torch has been passed. A new generation of NAMI advocates are fighting the fight. That generation, in turn, will make way for a newer generation, who in turn will make way for yet a newer generation. No matter how successful we may be in getting people to listen, there will always be a fight. No matter how much progress we may make, we will always be in the bad old days.

Just one person in need is one person too many. We have a long long way to go. Just so long as we have people willing to fight ...

On Friday, Oct 8, at its Inspirational Awards Dinner, NAMI San Diego will be honoring Katie Cadigan as its Inspirational Person of the Year. You are cordially invited to attend. For further info, please check out the dinner page on the NAMI San Diego website.

Charles Grassley is an Insurance Industry Shill and Enemy of the People

An article by Katherine Hobson in today’s Wall Street Journal reports that:

State chapters of the National Alliance on Mental Illness received several million dollars in contributions from pharma companies in a little less than five years, with big donations from Eli Lilly, AstraZeneca and Bristol-Myers Squibb, according to a letter from Sen. Charles Grassley.

The article cites an earlier NY Times report of NAMI national as “'hugely influential in many state capitols' for its lobbying efforts to keep states from putting any restrictions on the drugs that can be prescribed to patients covered under Medicaid and other government-funded programs."

Excuse me for breathing too loud, but it seems the only time mental illness gets any attention from the media is when someone with a mental illness shoots someone or gets shot by the police. Or when some grandstanding politician with no moral principles tries to pretend he is speaking for the people.

Anyone who has been following this blog knows I am on the board of NAMI San Diego. I have also been associated with DBSA. Both NAMI and DBSA offer free - I emphasize free, free as in free - programs and services. It has been my honor over the years to serve in the trenches alongside highly - very highly - dedicated individuals.

In a recent blog piece, I posted a video I edited of a group of soldiers serving in Iraq who organized a 5K Run in full body armor concurrent with our NAMI Walk in San Diego. Our local organization is working very hard to raise awareness for PTSD and the special needs of those who serve and have served our country.

At both DBSA and NAMI, we see - everywhere -  a huge unmet need. Individuals enduring extreme personal hells. Families driven to the brink. We know what we’re talking about. Most of us serving in NAMI and DBSA have been through it. Most of us are still dealing with the challenges. Trust me, every soul I have served alongside is uncompromising in his or her belief that no one should ever - ever, ever - have to endure for one day through what they - we the people - have faced day in and day out for years and even decades on end.

Do I have to cite the terrible litany, life by life, soul by soul?

In addition, our organizations benefit from the efforts of those who have dedicated their lives to improving ours. These include enlightened clinicians and students training to enter the mental health field.

Alas, a huge unmet need. Alas, precious few resources. One drop of commitment into a vast bottomless black hole of suffering.

Sad to say, mental illness lacks the cachet of the glamor diseases. High society does not write out six figure checks to support our cause. Hollywood doesn’t rally behind us. Politicians look the other way.

We look around, we in the trenches. We see vital services cut. We see people cut off, cut out. We field their calls for help. We’re there when they walk through the door. But there is only so much we can do. We roll up our sleeves and do what we can. Then we scrap, we hustle, we lift the seat cushions for whatever loose change happens to roll to the floor.

I’m not going to lower myself by responding to Grassley’s shameless accusations and innuendos. But I will note this:

According to OpenSecrets.org, Sen Grassley received $279,118 in campaign contributions from the insurance industry from 2005 to 2010. He voted against health care reform.

The Senator from Iowa is part of the problem, not the solution. He needs to be called out for the paid industry shill and an enemy of the people he truly is.

Thanks. I needed that. Time for me to breathe a little less loudly. Thank you for your patience.

Disclosure: I am on the board of NAMI San Diego. What I said here is my own opinion entirely and does not represent NAMI San Diego or any individuals or organizations it is affiliated with.

NAMI Runs in Iraq

You have to watch this.

On April 17, concurrent with the NAMI San Diego Walk for mental health awareness taking place in Balboa Park, John Bell and members of his Army unit in Iraq ran 5K in full body armor. One in six veterans of Iraq and Afghanistan is affected by PTSD, depression, or anxiety. Only half seek help.

My NAMI San Diego Walk Video

Enjoy ...

(This is the high def version that replaces my low def version I had uploaded earlier.)

Jumping Right In

I recently joined the board of NAMI San Diego. Last week, this involved going into town three times for various meetings. Today, I'm off for another one, with some homework I need to prepare. Just what I need in my life right now, more work. Why bother?

A bunch of reasons. First of all, I come from a family that believes in giving back to the community. My mother and late father both served on various community boards and were always there to lend a helping hand and so did our neighbors. I'm not sure if any of them could have articulated a reason for their service. Back in those days, it was something you just did. Period.

Another big part has to do with my work as a mental health journalist. Oddly enough, the conventions of my profession dictate against getting involved. Heaven help if I started getting close to patients and loved ones, not to mention those who have dedicated their lives to improving ours. There goes my objectivity.

For three years, I ran a DBSA support group in Princeton, NJ. I was the poor shmuck who showed up a half-hour early every Tuesday evening to turn on the lights, arrange the tables and chairs, display the literature, and welcome arrivals. Then I'd facilitate the meeting or help break in a new facilitator. During the week, I might be fielding phone calls or getting photocopies run off, or doing the zillion-and-one things that no one ever finds out about.

Why bother? Couldn't my time have been better spent doing what I do best - namely writing about my illness? No. Absolutely not. I needed to jump in and get my hands dirty. I needed face-to-face contact with people who lived with my illness, including loved ones, on their terms rather than mine.

Shake me up, surprise me, show me what an idiot I am. Close up and involved was the only way to go. Living in my own bubble just didn't cut it.

Now NAMI beckons. Different type of involvement. New challenges. New things to learn. Besides, it's something you just do. Period.

Beyond Meds: Is There an Answer?

A few days ago, Beyond Meds "reprinted" a 2000 tract by clinical psychologist and author Ty Colbert PhD, entitled, NAMI Parent’s False Hope: Blindly Disabling Children for Life.

Dr Colbert has participated in NAMI, where he has observed parents achieving at best mixed success with their kids on meds. According to Dr Colbert:

"Even though these members (parents) are dedicated to helping their children, because they have been falsely convinced that mental illness is a biological disorder, they are blindly helping to disable their children, many for life."

Clearly Dr Colbert struck a chord, judging by the post's numerous spirited comments, some virulently anti-NAMI, but many from individuals who feel that long-term meds treatment has ruined their lives.

Dr Colbert cites the case of Gary, the son of two NAMI parents who became depressed shortly after being turned down for an athletic scholarship. He was examined, then sent home (this would have been more than 30 years ago, so we are presuming no meds were involved). Then, when Gary's thinking grew disordered and delusional, he was diagnosed with schizophrenia and prescribed medication. Despite this, his condition deteriorated, and 25 years later he is still struggling to reclaim his life.

According to Dr Colbert: "His paranoid thoughts and hallucinations were his mind’s way of trying to deal with all this pain." An insightful therapist, Dr Colbert contends, "could have helped Gary deal with his strong feelings of failure. In this way, Gary could have successfully worked through his pain and not lost his life to the disabling effects of the drugs."

It is a long stretch to claim that Gary lost his life to meds rather than schizophrenia or that talking therapy could have helped, particularly in describing events that occurred a quarter century before Dr Colbert ever laid eyes on Gary, but we get the point.

Indeed, at this year's International Congress on Schizophrenia Research I learned that 4 percent of the US population experiences psychotic symptoms without having schizophrenia. Clearly, then, we can make a case for extreme caution before slapping a label on someone and telling them they will need to be on meds the rest of their lives.

So what is Dr Colbert's clinical track record? Curiously, the one unequivocal success he cites in his piece involves helping a kid through his "dark spot." No mention was made of any symptoms approaching schizophrenia. Dr Colbert does say he has helped young people through their "psychotic breaks," but the best he can show for his efforts is Jerry, age 28, who is only just beginning to put his life together after 10 years on meds.

Dr Colbert points out that psychosis doesn't just come out of nowhere, but this is hardly news. The "diathesis-stress" model has been in circulation in psychiatry for at least three decades, the DSM refers to psychosis linked to stress, and research across a wide array of disciplines strongly supports the notion that our brains mediate how we respond to our environment. Dr Colbert contends that "the mind is actually functioning very creatively to protect the soul or self," but in reality he is describing a physical and biological organ very hard at work.

But, yes, we badly need Dr Colbert's voice in the conversation. Over the course of two decades he has been speaking out against the blind faith patients and families have placed in very imperfect and frequently disabling meds, and the terrible things that can happen when frustrated patients inevitably go off them without other therapeutic supports in place.

Having said that, it is appropriate to end on this cautionary note:

Some time back, an individual I know fairly well entered a program inspired by (but hardly modeled on) Loren Mosher's Soteria House. He was taken off his meds and underwent talking therapies designed to get him in touch with his feelings. (Soteria House would never have taken this individual off his meds.) While still in the program, he experienced a psychotic break and entered a restaurant brandishing a BB gun. He was arrested, criminally prosecuted, and served two years in a locked psychiatric unit, along with murderers and other violent offenders.

This individual is now on meds and is working part-time in an academic setting. The doctors in charge of taking this individual off his meds refused to take responsibility.