I do not Agree to the proposition that I am Worthless

This was one of my first posts, written in September 2014
to Sonoma County Supervisor, Shirlee Zane.

Supervisor Zane held a hearing that month to examine
the inadequacies of Kaiser’s Mental Health Services

I submitted this letter to her as my testimony.

I am reposing it as a response to the GOP’s renewed
assault
on the Affordable Care Act

 

To: Supervisor Shirlee Zane
Supervisor District 3
Sonoma, CA

Dear Supervisor Zane,

Thank you for considering  my story for your listening session to hear public comment about parity and mental healthcare.

And, thank you for your advocacy for people with serious life threatening mental illnesses.

For many of us the Behavioral Health System simply does not work.

To some of us it looks as if it does not want to.

In 2009, I was diagnosed with a severe dissociative disorder.

I see a psychotherapist twice a week and I realize that this is an achievement and yet I want to state that this should be the norm.

The idea that I should be grateful for receiving the only treatment
known to work for this illness is absurd and places me in a beggarly role.

My problem is that my illness now requires a more intensive structure as I begin to face the emotional reality of the abuse that caused it and the damage that I did to my life in my ignorance.

Treatment is painful and frightening.

My illness seems to affect that part of the brain that governs autonomic reactions.

The trauma response is instinctive and bypasses reason.

My “behaviors” are symptoms of “trigger” responses to memories
so painful my brain repeatedly banishes them from consciousness.

This means that parts of my psyche are subconsciously locked in moments of fear, pain, and dread.

They are locked in moments of abuse

I felt desperate when I met with my psychiatrist today.

I am overwhelmed by emotional pain and often feel trapped
and hopeless.

When I leave my house, I have panic attacks in which I
freeze  in traffic.

Yesterday I was nearly hit by a car.

I am constantly in a state of anxiety and the toll on my physical health and my relationships is terrible.

There were very real and commonsense reasons that psychiatry
once offered patients extended hospital stays.

Families are not trained therapists.

If anything, the families of patients need education and support.

I have discussed the idea of intensive case management with
my primary therapist.

I asked my prescribing psychiatrist, whom I see once every three months, for either a consulting psychotherapist experienced in  dissociative disorders or an intensive case manager who can train the staff and co-ordinate  my treatment when I need a critical intervention.

My psychiatrist told me that there are “financial constraints” and advised me to make the request as a grievance.

Why do I have to do battle to receive the recommended treatment for someone with a verified dissociative disorder?

There are no “real” financial constraints; certainly not in a nation will give the wealthy Dick Cheney a free heart transplant.

The recommended treatment as outlined by the International Society for the Study of Trauma and Dissociation is this:

  1. Intensive psychotherapy.
  2. Access to a hospital or residential setting to ease the stress on my family and hasten the course of treatment.

  3. Intensive and specialized trauma-focused work on symptom management and skill building.

  4. And a treatment team that co-ordinates care.

I am only asking for those components that are essential for the
successful treatment of a life threatening illness.

When Mental Health became Behavioral Health, the focus shifted from Psychiatry to Substance Abuse.

This is why almost all Behavioral Systems look for any sign of substance use in a psychiatric patient’s history.

Substance use is automatically tagged on as a secondary diagnosis even if one only uses marijuana and only uses it occasionally

Strict Substance Abuse disorders respond well to behavioral interventions and supportive group therapy.

That’s why A.A. has an estimated membership of 1,867,212 people.

Patients with psychiatric disorders can use behavioral tools to help them tolerate distress but behavioral tools alone will not resolve the illness.

A physiologically traumatized brain cannot “fake it ’till it makes it’.

From ABC News 2012:

“About 11.4 million adult Americans suffered from severe mental illness in the past year and 8.7 million adults contemplated serious thoughts of suicide.”

This country has everything it needs to give us access to quality healthcare.

What stands in our way are misery merchants and their lust
for power and money.

These misery merchants arrogantly expect the American people
to accept  the premise that we deserve death by exclusion.

I won’t accept it.

I do not agree  to the proposition that I am worthless.

Save the ACA meme found online
Save the ACA – Calls and Faxes work best.

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Guilty of Being Sick: Mentally Ill behind bars

Photograph of the feet of an elderly disabled woman sleeping in a doorway on Church Street
An elderly disabled woman asleep in a doorway on Church Street

The American mental health system treats all mental illnesses
as a short-term, easy to solve problem of addictive behavior.

Most mental health coverage in the U.S. rules out long-term
hospital stays, as well as long-term psychotherapy.

For profit psychiatry took the treatment protocols for substance
abuse disorders and decided to use them for everyone regardless
of diagnosis.

I am the first to concede that using mindfulness makes life
better in general.

But it is not the first line treatment for illnesses that rob
the brain of its ability concentrate and use reason.

People who are sick enough become homeless need intensive
case
management and long-term structured treatment
facilities
.

There is an industry in America that thinks it can fill that need:

Mental Illness, Untreated Behind Bars

“Mental health problems are rampant in local jails, often because the illness was a primary factor in the offensive conduct. The cost of caring for and supervising mentally ill inmates makes them two to three times more expensive to house. Once released, they often stop taking their medications, which lands them in trouble with the law and back behind bars.” NYT FEB. 27, 2017

 

Image of an American Flag behind Barbed Wire
Reprocessed Video Grab from Institutionalized-Mental Health Behind Bars by VICE News

Private Prison Corporations Profit from Warehousing the Mentally Ill

An alarming trend has emerged give private prison profiteers control of
person’s fate for life, not just the term of a prison sentence.

The CEOs who built billion dollar empires as partners in ‘tough on crime’ policies are adapting to prison reforms by re branding themselves ‘treatment’ providers.

They see the collapse of our public mental health system as an opportunity
to expand and profit from long term psychiatric hospitals, civil commitment centers, and ‘correctional’ treatments.

Correct Care Solutions, formerly known as GEO Care, a spin-off of GEO Group, has deep roots in the private prison industry. Although the company has shifted and changed numerous times over the last few years, CCS currently runs seven “treatment” facilities in Florida, Texas and South Carolina, including five mental health facilities and two civil commitment centers.

See more at: LexisNexis.com

 

Almost invisible (c) Rob Goldstein 2017 All Rights Reserved

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20 Ways to Live with ICD-9-CM: 300.14, 300.15

What is life like for someone who lives with and loves a man who is symptomatic with severe Dissociative Identity Disorder? (ICD 9 code 300.14,  300.15)?

My partner and I had a frank conversation about the stress of  living with me after a joint session with my therapist.

My lack of memory and the fear provoked by descriptions of incidents I can’t remember is “triggering ” and causes a switch.

I cannot describe what I cannot remember.

Were Kaiser doing its job my partner would receive a weekly call from my case manager so she could understand the true scope of the illness and make more accurate safety assessments.

The online Merk manual describes Dissociative Identity Disorder as follows:

“…chronic and potentially disabling or fatal, although many people function very well and lead creative and productive lives.”

With proper treatment, many people do go on to lead creative and productive lives.

I intend to be one of them.

I need a treatment team that includes an intensive case manager who understands the importance of sustaining my family system.

When I told my partner to call my Kaiser case manager when he has
fears he said, “Why? They do nothing. They blame me!”

We decided to work it out for ourselves.

This is a list of points that my partner and I agreed to about his relationship to my DID:

  1. He cannot cure the disorder, but he can take part in the healing.
  2. Getting better sometimes means more symptoms.
  3. When he feel resentment, take a break.
  4. Denial is normal but destructive.
  5. Everyone changes when a family member is engaged in psychotherapy.
  6. Love the person, even as you hate the symptom.
  7. Discrimination against the mentally ill is real — it only seems invisible because it is accepted.
  8. He may find it empowering to become more activist.
  9. He always has the right to say no.
  10. Mental health professionals have varied degrees of competence, integrity, and commitment
  11. He is not responsible for enabling the failures of the Nation’s Behavioral Health System
  12. I am a patient, not a consumer. There is a difference. Never forget that.
  13. It is OK to be angry when it makes you effective.
  14. You and your family member’s case manager should be in weekly contact, especially during a crisis.
  15. It is important to have boundaries and set expectations when speaking with care providers.
  16. The current suicide rate of 20% among people with PTSD related psychiatric illness is based on what’s happening to real people.
  17. A mandated hospitalization is NOT the worst thing that can happen to someone with a mental illness. It’s not the cheapest either.
  18. When it comes to safety, don’t take no for an answer.
  19. Never let your family member go to the hospital alone. Patients receive better care when the staff knows that someone is looking.
  20. Your family members illness is also an emotional trauma for you. If you decide to stay and take part in the treatment, you will need your own supports. 
    Facts About Mental Health Care: the suicide rate is the highest in thirty years
    Facts About Mental Health Care

    Update: My partner now attends a monthly joint session with my therapist.

    Image and post (c) Rob Goldstein 2014-2016 all rights reserved

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Dissociative Identity Disorder: Platitudes and Blame

An Apology

My alternates write and post while I think I’m asleep.

This still causes a sense of remorse and shame.
I try to comfort myself by saying, most people don’t care.

But I care.

Why?
Fear.
Of what?
Fear of bigots who do cruel things to people with mental illnesses
and justify their cruelty with cheap platitudes.

They’re everywhere including the Behavioral Health System at Kaiser.

One of my alternates responds to the implied blame in certain
platitudes with rage:
“This hurts me more than it does you”
“If they stayed in their place this wouldn’t happen.”
“People should be with their own kind.

“If you tried harder you could work!”

“All you have to do is change how you think!”

The corpses of people tortured into their graves while
their tormentors shamed them with cheap platitudes
litter the World’s graveyards.
Arbeit macht frei
“Work Makes Free” was the wisdom at the gates of Auschwitz
What triggered me this time?
Last Thursday I arrived at Kaiser Facility to begin a 12 Week
course: Managing the symptoms of Complex Post Traumatic
Stress Disorder.
I had called on Monday to verify the schedule at the request of
my therapist.
When I checked in the receptionist said I was not scheduled to begin
the course until January of next year.
I felt the angry one surface:
“That’s stupid!” He said. “That’s like having a broken leg  and being told to come back in six months to have it set. Who do I talk to?”
The receptionist left a message with the therapist who runs the schedule and got me
into the group.
Switching that fast is always a big deal.
It is a visceral defense mechanism automatically activated as part of the flight or fight response.
In my case, the response is fight.
But a result of being chronically “activated” is that I have a low threshold for panic attacks.
When I reached the waiting room, I could hear my heart pounding.
I sat down and other patients began to arrive for the 4pm group.
One woman was using them as an inducement to leaving her home.
She only left her house to come to Kaiser.
At 4:30PM, there were five of us waiting for the group to start.
Someone went up to reception and discovered that the group was cancelled.
No one on the staff had bothered to tell the five patients who had arrived early
and were anxiously waiting for the group to begin,
Kaiser cancelled an important treatment group because the group leader
was sick and the Kaiser Department of Behavioral Health is so understaffed
there was no one to take her place.
This was the trigger that resulted in lost time this weekend.
It is my job to manage my illness and I take responsibility when I screw up.
I’m not saying that Kaiser is responsible for my behavior during a trigger response.
I am always responsible for what I say and do.
And I am working toward the day when my emotions will stop having minds of their own.
To do that I will need a treatment provider that wants to treat serious mental illness
and that cares enough about its patients to offer a fully staffed department of
psychiatry.
Art by Rob Goldstein
Kaiser Defense Mechanisms

(C) Rob Goldstein 2014

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