Degree of Writhing

She was impaled by a person. Along with the act, she was informed that she would remain there and that the means to remove her would be withheld. She was informed that should she appeal to others who would contact the impaler for collateral information, that she would be described as malign, foul and unwanted. A few others who knew what was in store for her promised their support and help.

She was impaled for all to see.

She writhed and contorted and struggled to reach something that could be used to wrench herself loose. Those who promised help disappeared and did not answer her calls for support. They did not help, and they did not call on others to help.

She found herself alone.

The pain, the agony and suffering were unbearable, just as the impaler intended.

But the place of impalement was strategically designed to cause the slowest dying possible, and was designed not to make death come earlier. It was executed to cause the maximum degree of suffering with full realization of the fate and future of the impaled writher.

One by one, and sometimes concurrently, the impaled person used up her means of escape. She learned that to struggle was futile. To writhe more actively only increased pain and fatigue. She couldn’t get to sleep, couldn’t stay asleep, and she awoke very early. Sleep soon became no escape and provided no rest.

Years passed, and on she writhed and agonized.

At this point, she realized that she was out of all resources, and she called out for help from learned helpers.

The highly credentialed, learned helpers poked and prodded and caused even more agonizing pain as they slowly and methodically assessed her symptoms. Although she repeatedly told them that she was impaled – Look! I need people who are qualified to remove what’s holding me fast to free me – they ignored her begging and pleas.

The learned helpers decided that her writhing and grimaces and pleas for help could all be treated as symptoms of depression. She was told that she was going to be treated for her pessimism and refusal to believe in hope. She was forcibly medicated and restrained so that the writhing was contained. She was told that treatment was to keep her safe.

As she adjusted to the medication, she saw her body react to the derangements done it by the sedating, restraining chemicals. She struggled to writhe and react to the agony of the raw and festering wound. But she learned to be silent and to deny that suffering to the learned helpers lest they inflict more restraint, punishment, containment and contribute to her agony.

Some helpers came only to stare. Some to ridicule. Others to condemn. A few saw opportunities for sadism, and they kicked her, made open fun of her and reported to the treating learned helpers falsities designed to induce the learned helpers to inflict more treatment and up the induced agony.

Some of her treatment involved being instructed on how her thoughts were negative and to employ strategies to replace negative thoughts with hopeful ones. Another treatment involved instruction on maintaining distress tolerance. Both of these considered writhing as something to be abolished. Neither strategy dealt with removing the wounding weapon and treating the gaping, festering, infected wound.

It was apparent that this situation was permanently incompatible with life. She decided that instead of struggling any longer to free herself, that she would instead, simply try to find a means to achieve a painless and peaceful death.

But the learned helpers decreed that this was evidence that she was psychotic. Therefore, she would be contained until she was deemed “safe”. But the definition of safe was solely that she would not try to end her life.

Safe did not apply to all of the others who were content to have her suffer or to contribute to her agony and suffering. Safe did not mean a secure home, safe did not equate with a means by which to support herself, safe did not mean acceptance and welcome by others she deemed potential neighbors, coworkers, friends, physicians.

She was told that there are many treatments for her symptoms. She learned that they conflated treatment with efficacious, benign, therapeutic and beneficial. She learned that treatments were risky, dangerous, caused temporary and permanent harm, and did not address the causes of the symptoms.

She was told that the learned helpers decided on treatments based on their professional judgment. She learned that treatments are determined largely on the whims and beliefs of the learned helpers, and often they are chosen to punish the person for their audacity to exhibit distress and to admit that their underlying problems are not being helped.

And so she remains impaled, actively looking for the means by which to give herself a painless and peaceful death while all around her, the means to remove her from being impaled are withheld.

She remains a freak, a pariah, and an untouchable. Indeed, when she was contained and forcibly medicated, no one touched her except to wield a needle and crowd her into a locked cell sans furniture – no window, a security camera, a cage. Just herself impaled.

No one spoke to her except to poke, prod and exacerbate her awareness of her suffering by ongoing clinical assessments, each designed only to elicit symptoms and to ignore root causes.

So as the means to achieve a quick and painless death are not within reach, she has decided to passively bring about her death by no longer eating.

She remains out of sight knowing that no one will look for her. No one wants to see because when they do catch a glimpse, it angers and disgusts them to see her writhing in their midst. It is not pretty, being associated with her could cause a risk of social or work harm (guilt by association), and she has been deemed worthless.

She can’t wait until it’s over, and she looks forward to being too weak to writhe, too weak to comprehend the agony and too weak to care. Those signposts mean that the total and permanent end of her hell at the end of the learned helpers’ road of good intentions is finally within reach.

The Lived Experience of Ostracism

h/t whatnot

I first discovered C. Fred Alford’s work about the experiences of whistle blowers. In it, he describes what constitutes “knowledge as disaster”, and my experiences jibes almost perfectly with this list:

“What must the whistle-blower forsake in order to hear his own story?

* That the individual matters.

* That law and justice can be relied upon.

* That the purpose of law is to remove the caprice of powerful individuals.

* That ours is a government of laws, not men.

* That the individual will not be sacrificed for the sake of the group.

* That loyalty is not equivalent to the heard (sic) instinct.

* That one’s friends will remain loyal even if one’s colleagues do not.

* That the organization is not fundamentally immoral.

* That it makes sense to stand up and do the right thing. (Take this literally: that it “makes sense” means that it is a comprehensible activity.)

* That someone, somewhere who is in charge knows, cares, and will do the right thing.

* That the truth matters, and someone will want to know it.

* That if one is right and persistent, things will turn out all right in the end.

* That even if they do not, other people will know and understand.

* That the family is a haven in a heartless world. Spouses and children will not abandon you in your hour of need.

* That the individual can know the truth about all this and not become merely cynical, cynical unto death.

Not only is it hard to come to come to terms with these truths, but when one finally does, it seems one is left with nothing.”

Now plug in this list to Smart’s diagram below.

Multimotive model of reactions to interpersonal rejection experiences.Smart Richman, L., & Leary, M. (2009). Reactions to discrimination, stigmatization, ostracism, and other forms of interpersonal rejection: A multimotive model. Psychological Review, 116 (2), 365-383 DOI: 10.1037/a0015250

That, in a nutshell, is my experience. Ostracism is a cruel death sentence where all of the means to sustain oneself are intentionally withheld. The victim is used as an object of ridicule, contempt and alienation. The dying is slow, and there is full self awareness of what’s happening. Think of open heart surgery being performed without end, night and day without anesthesia, where the surgical team continually ignores the cries for help and instead makes jokes about the patient and his plight.

That is ostracism. Alford describes whistle-blowers who are doomed, but somehow, he never connects their experiences to ostracism. He discusses living as though one is already dead. Yup, that’s ostracism, because in the eyes of those who know and those who commit it, the victim as person has been murdered and only a ghost remains. But because the ghost has a heartbeat and is still enfleshed, it’s an object used for entertainment. In this case it’s used to create a feeling of superiority and legitimacy by degrading the victim as an unworthy, repulsive “other”.

I have been an other for time out of time. There is no re-entering society. I have been a most compliant patient patient and have repeatedly tried and failed to find a job, volunteer, make a friend beyond the most superficial of acquaintance level, and find any meaning or purpose in continuing to exist this way and there is none. In writing about some of my experience, I attracted a cyber stalker nurse and her band of bullying nurses, ambulance drivers and a Texas ER doc who wrote that “if she’s still alive we can make fun of her”. I was diagnosed as having persecutory delusions because my story “reads like a novel.” The outpatient psychiatrist to whom my case was assigned – she sure as hell didn’t volunteer – is married to the CEO of a competing organization in which I had been an inadvertent whistle-blower. In that organization, the mid level manager and director paranoia ran on high octane, and ironically, I wasn’t paranoid enough to save myself.

The paranoid whistle-blower is absolutely fight (sic) that his organization is not just out to fire him, but to obliterate him or her. The whistle-blower’s paranoia is an accurate emotional reading of an emotional reality: the one who has become the scapegoat cannot just be dismissed, but must be destroyed, so that others will know.

It is this aspect of paranoia that is the most difficult of all for an outsider to come to terms with because it represents a truth that is hard to know: that if the organization feels sufficiently threatened by the individual, it will remove him or her. Not just beyond the margins of the organization, but all the way to the margins of society. The average whistle-blower of my experience is a 55-year-old nuclear engineer working behind the counter at Radio Shack.

I was so desperate for help that I eventually sought it from the mental health non-system system, knowing full well that I would be placing myself in the hands of providers who were as likely to treat me with contempt as those who ostracized me did. All of my concerns were validated. For my troubles, I was diagnosed with stigmatizing labels, received treatment which resulted in metabolic, immune and cardiac derangements, was repeatedly deceived, humiliated, degraded and dehumanized, and was coerced and threatened. Physical problems were not diagnosed and treated, but instead were recorded as being somatizations and dismissed, if they were acknowledged at all. I cannot expect to receive competent healthcare from any provider who accesses my medical record because I am permanently and prominently labeled as the “xx year old homeless patient with extensive psych history”. When I pointed out multiple examples in the medical record of that to the outpatient psychiatrist, she sent a note to some of the offenders very politely requesting them not to do that anymore, and she proudly relayed that to me. But still it continued, and having been on the provider side, I know damn well that once patients are labeled, that they are treated with contempt, do not receive even minimally acceptable care, and they suffer for it with higher morbidity and mortality rates.

I took myself off every prescribed medication as none had helped, some were prescribed to mitigate the adverse effects of others, and many had caused direct harm. I read my medical record, identified what lab and diagnostic values were abnormal, and then I did all of the self care activities that I could do with my resources to reverse the damage.

But ostracism can’t be treated with medications and meditation. It requires a real physical friend, a network of professional/work peers, and a place in the social order. None of those are available to me.

Stillman, et al, describe life without meaning and purpose:

Why should social exclusion reduce the sense of life as meaningful? The pervasive reliance on social connection as humankind’s biological strategy entails that people are deeply motivated to connect with other people as a fundamental aspect of nearly all human striving. Meaning itself is acquired socially. Hence to be cut off from others is potentially to raise the threat of losing access to all socially mediated meanings, purposes, and values.

The formation and maintenance of positive close relationships can aptly be characterized as one of the primary motivations for human beings (Buss, 1990; Maslow, 1968). This pervasive drive has been described as the need to belong (Baumeister & Leary, 1995). We define social exclusion as a perceived deficit in belongingness.

Oh, belongingness. Joiner has something to say about that:

The theory posits that serious suicidal behavior will not occur unless an individual has both the desire to commit suicide and the ability to do so. Two factors contribute to an individual’s desire for suicide, a thwarted sense of belongingness and a sense of perceived burdensomeness on others, while the ability to commit suicide can be acquired over time through habituation to the physical and mental pain involved in self-injury.

I have been cut off from a place in society. The mental image I have is the astronaut in 2001 whose oxygen line has been snipped by HAL, the malign robot. At least the astronaut suffocates quickly in the absolute freezing void of space. His awareness of his predicament is full, but brief.

Not so the ostracized, who have to find their way in a hostile wilderness which is incompatible with life. I am out of place everywhere. There is no place to escape to. There is no respite.

In my everyday world, I go places to kill time. To use up the eternal isolation. To go just for the sake of movement. There is no reason for a journey. There is no destination. I try to keep everything out of focus, like looking sideways out a car window, because any conscious realization of my plight is too excruciating to bear, even for a moment. Time has no meaning. There are no holidays, anniversaries, birthdays, wedding, births, deaths, or special events by which to measure life. There is no quality of life. Everything adds up to zero. It is exhausting purposeless, meaningless, hamster wheel work, which is unending.

The psychiatrist conflated psychological assessment with treatment (not just her – I have found this with all mental health providers across disciplines), and I find this in the literature, as well. Assessment of depression, chronic severe insomnia and suicidal ideation is intrusive and painful, and yet, that is the extent of what she did at each visit. I had nothing else to share. My story was invalidated by diagnosing it as delusional. I will not refer to it again. It is not able to be heard by anyone. And I don’t want to cause anyone distress, which this obviously does.

It reminds me of times when people who knew what was happening to me would turn away when they saw me, lest they be seen with me and thus perceived as being at risk for ostracism themselves. There’s nothing like having people literally run from you to bring home how your life is destroyed.

She asked me what I was reading, but I’d reported to her my increasingly and consistently poor ability to comprehend, let alone, remember what I’ve read. I no longer read anything longer than a headline. Culling the literature for this blog post is taking me an extraordinarily long time. It probably reads as disjointed and not terribly well-reasoned. My cognitive ability and memory stink, to use the technical term. Yet, I can’t distinguish whether my nonstop efforts to keep everything out of focus, and so to minimize the consciousness of my predicament is the cause of my ever worsening cognition or just an effect of ongoing isolation.

Except for the visits to the psychiatrist, I have not had a single substantive conversation with another person for many years. And I wouldn’t really call the content of the visits conversation. In reality, I was always on tenterhooks trying to not evince distress, lest she decide to forcibly treat me.

I’ve lost the ability to have a social conversation. I can’t relate to others because I have no social commonalities – no family experiences, no contacts with people considered friends, no work role, no social role – nothing on which to any longer identify with others. When I was still trying to regain involvement via volunteering, as soon as someone got a whiff of my isolation via lack of those connections, they would abruptly cut off the conversation. I never heard from any of them again. The psychiatrist had been told this repeatedly when she poked and prodded into why I no longer sought outside activities. That amounted to self punishment. It’s painful to be rebuffed and excluded over and over and over. I am a slow learner, but I finally got the lesson: in order to avoid inflicting pain on myself, do not try to go where you are not welcome. That would be everywhere.

But she did it herself. She’s in a position in which, if she were to go out of role, granted, she could have provided me networking referrals to jobs.

But of course, she didn’t. Boundaries, you know. I was an assigned case, a cluster of pathological symptoms. Not a person, not someone with advanced education and related professional experience, not even a plain old person. She made two specific suggestions about how she saw me being able to contribute: to serve as a personal care attendant (adult baby sitter and butt wiper) or as a pet sitter. As if that wasn’t confirmation of my deemed worthlessness. Early on I had given her a copy of my vitae, and to her credit, she read what I had offered to her via a sample of my writing and the Alford article referenced here. And I don’t believe that she conducted therapy as a rule. I’m pretty sure I was an exception and guess that she primarily practiced psychopharmacology along with her administrative duties.

In my medical record, it turns out that her sole treatment goal for me was to keep me “in the realm of suicidal ideation. Dx: existential despair, but no worse than usual.” And that was the most positive thing written in my entire medical record. How is that compatible with life?

Stupid me. If I had gotten my records earlier, I could have saved myself the repeated distress of being “clinically assessed” (read psychologically debrided without anesthesia with wounds left gaping) and left to try to forget until the next session of torture and tell.

In my world, no one returns phone calls and emails. I received a total of 6 pieces of US mail last year (not addressed to “or resident”) – all from organizations requiring paperwork and none from individuals or anyone who knows me personally. I used to keep NPR on to hear reasonable, non-violent human voices. But I finally stopped because I often couldn’t follow the patter and it became just more intrusive and irritating noise. Now I just keep a fan running to drown out gunshot season – any loud abrupt noise especially during open window weather. I exist in a noisy world but with more silence than a monastery.

I can’t get any enjoyment out of any experience. Food tastes like nothing. Everything is a tone of grey and shadow. Aromas that in the past evoked pleasant memories are undetectable, and most aromas smell foul. Music is just notes, too loud and evoking nothing. People are nothing but harbingers of pain and dread. No one has voluntarily touched me except to perform medical procedures using my body as just an object, such as blood drawing and injecting a joint, in many years. I know better than to reach out a hand or to offer a pat on the shoulder. It would most decidedly not be welcomed.

There is no reason to prolong this, but my attempts at providing my own euthanasia failed. The LD50’s weren’t enough, and I don’t have the means to provide myself with a peaceful and painless death. I’ve come to realize that a painful death is preferable to this unending dying.

Ostracism means that there is no burden to anyone. Society has already unburdened itself of me.

Ostracism is a death sentence, and every person who knows that it’s been imposed on someone and yet who does not intervene, is a member of that judge and jury.

I can’t stand the notion that the rest of my natural lifespan is going to be spent in this wholly silent, totally isolated and destitute way of existing. It’s enforced insanity. The conditions explain why most whistle blowers get sick and die early.

ResearchBlogging.org

Alford, C. Fred (2007). Whistle-blower narratives: the experience of choiceless choice Social Science, Volume 74 (1), 223-248

Smart Richman, L., & Leary, M. (2009). Reactions to discrimination, stigmatization, ostracism, and other forms of interpersonal rejection: A multimotive model. Psychological Review, 116 (2), 365-383 DOI: 10.1037/a0015250

Stillman, T., Baumeister, R., Lambert, N., Crescioni, A., DeWall, C., & Fincham, F. (2009). Alone and without purpose: Life loses meaning following social exclusion Journal of Experimental Social Psychology, 45 (4), 686-694 DOI: 10.1016/j.jesp.2009.03.007

Van Orden, K., Merrill, K., & Joiner Jr., T. (2005). Interpersonal-Psychological Precursors to Suicidal Behavior: A Theory of Attempted and Completed Suicide Current Psychiatry Reviews, 1 (2), 187-196 DOI: 10.2174/1573400054065541

Williams, Kipling D (2001). Ostracism: The Power of Silence 2001 Other: 1572306890

Dogs that do not bark: ostracism, psychache and suicidality

The Way Out, or Suicidal Ideation: George Grie...

The Way Out, or Suicidal Ideation: George Grie, 2007. (Photo credit: Wikipedia)

1 boring old man referenced this historical and alarming analysis on the evolution of melancholia to major depressive disorder.  Science?  Evidence?  Fuggediboudit.

MDD, the most influential diagnosis of the past 30 years, emerged from intraprofessional pressures and the ability of research-oriented psychiatrists to gain dominance within the profession. Most importantly, psychiatry needed a credible classificatory scheme to maintain its legitimacy in both the broader medical profession and the culture at large. As prominent depression specialist Gerald Klerman (1984:539) succinctly summarized: “The decision of the APA first to develop DSM-III and then to promulgate its use represents a significant reaffirmation on the part of American psychiatry to its medical identity and to its commitment to scientific medicine.” Medical legitimacy required easily measurable and reliable diagnoses. The diagnostic criteria grounded in the Feighner measure that emerged in the DSM-III to resolve the many unsettled diagnostic controversies—and that have remained mostly unchanged until the present—did produce a far more reliable system of measurement than the amorphous criteria they replaced. Yet, this particular diagnostic system was not tested against the many alternative classifications that were available during the 1970s that might have been as good or even superior to the Feighner criteria. Instead, their adoption resulted from the shared commitment to a view of psychiatric diagnoses and the path that the psychiatric profession should follow among the research-oriented psychiatrists who controlled the development of the DSM-III classifications.

The developers of the MDD diagnosis did not foresee the profound consequences it would have. They inadvertently developed criteria that encompassed what had previously been viewed as a number of distinct types of depressive conditions. Endogenous, exogenous, and neurotic forms of depression could all meet the expansive criteria of the MDD diagnosis. Moreover, because it could incorporate short-lived responses to stressful conditions, MDD was the most suitable label for many of the heterogeneous and diffuse complaints that many primary medical care patients present. Likewise, depression became the most prevalent form of mental illness measured in epidemiological studies because so many community members suffer from common symptoms such as sadness, sleep and appetite difficulties, and fatigue that need only last for a two-week period to be considered disordered (Kessler et al. 2005). The sweeping qualities of the diagnosis also made it the most attractive target for the vastly popular SSRI medications that came on the market a few years after the publication of the DSM-III. Primarily through pharmaceutical advertisements, ubiquitous messages associated the most common forms of distress with major depression. This condition became psychiatry’s most marketable diagnosis, driving mental health treatment, research, and policy. Ultimately, the Age of Depression that has engulfed the United States and much of the Western world since 1980 resulted from relatively esoteric changes in diagnostic criteria.

It’s all about c.v. building by a chief resident of a backwater psychiatry program.

Then there’s this – relational ostracism – an unwanted enforced state of thwarted belonging.  It can take many forms, and its effects are severe, persistent and devastating.

The impact of stranger-ostracism is strong and painful,and has been shown to lead to aversive psychological responses (i.e., a threat to four primary human needs—belonging, control, self-esteem, and meaningful existence; see Williams, 2001), and a rangeof detrimental behavioral responses such as social susceptibility (e.g., Maner, et al., Carter-Sowell & Williams, 2007), inappropriate mate choice (e.g., Winten et al., 2006), risk-taking behavior (e.g. Daleet al., 2006), and anti-social behavior (e.g., Warburton, Williams, & Cairns, 2006).Despite the prevalence of ostracism in interpersonal relationships, ostracism research to date has not systematically investigated relational ostracism (i.e., the silent treatment, or ostracism carried out by one partner on another).

What’s missing in both of the above?  Their relationship to suicidality and psychache.

There is such a dearth of literature about ostracism – and virtually none about clinical intervention, treatment and support for people who are targets – that it isn’t surprising to find it absent.

But Kipling Williams, Thomas Joiner and C Fred Alford’s work can form a pillar by which to build a clinical and research model to aggressively address unbearable psychache, develop strategies (which may include public health and social justice policy and programming) to minimize and remove ostracism in all of its ugly forms, and to reformulate how suicidality is assessed and addressed.

The highest priority items for me would be to deep six “suicide assessment” in favor of distressors as described by Joiner’s three domains of perceived burdensomeness, thwarted belongingness and the capacity/rehearsal to tolerate self-inflicted death.

The second is to couple all assessment with immediate and adequate distress reduction which does not entail threats of or actual involuntary confinement, intrusive observation, forced medication, any type of restraint or anything other than active multi-sensory comfort, safety and mutually deemed appropriate and acceptable interventions, resources and supports.

One more thing that is never addressed in relation to psychache:  the extraordinary amount of physical and psychological energy toll it takes.  The relational ostracism study illustrates that for many, being a target is permanent as long as the “source” is present.

When one is powerless to escape ostracism, has no ability to affect a preferred future, and is effectively trapped, suicide becomes more salient as an alternative to put a permanent ending on an intolerable condition.

Here I discovered a study about people with severe/terminal illnesses who wish to hasten death – WTHD. Of course it doesn’t include people with psychiatric diagnoses (those people are nuts, donchaknow), but it fits right in with Joiner’s theory:

WTHD as a way of ending suffering

Among participants in the studies included, the WTHD also emerged as a way out, and in some cases [45][69] as the only way of ending their physical and psychological suffering. Death was not considered as an aim in itself, but rather as an escape. Indeed, the idea of putting an end to their life brought a sense of relief to some patients.

In the study by Schroepfer [71] the WTHD was regarded as a way out or as a means of relieving loneliness, fear, dependence, a lack of hope and the feeling that life was no longer enjoyable. The study by Nissim et al.[69] suggested that in the face of oppression and despair, death could be seen as the only alternative, with the WTHD being the essence of a plan to relieve suffering. Similarly, Lavery et al. [45] reported that the WTHD was seen by participants as a means of limiting disintegration and loss of self.

In five of the studies reviewed [14][46][69][70][71] the participants also described the WTHD as a way of reducing the suffering being caused to family and carers. Coyle and Sculco [14] interpret this as a gesture of altruism, since the WTHD is motivated by a desire to relieve the family of the burden of care and of witnessing their relative’s progressive deterioration. However, although the WTHD was driven by such a motive in some patients [71], in others (or simultaneously in the former patients) the desire to cause no more pain to their relatives led them to precisely the opposite conclusion, i.e. they repressed the WTHD. As such, their wish to protect their family took precedence over their own wish to hasten death [71].

And so we circle around to Alford’s “knowledge as disaster” concepts. See the About page for a listing.

Until the key elements of this circl(ing the drain) are interrupted permanently and predictably, suicidality will go on unabated, unaddressed and just as vicious.

The strangest part?  Psychiatry, with all of its disorders, doesn’t ever mention suicidality, psychache, thwarted belongingness, perceived burdensomeness and rehearsed capacity for self-inflicted death.

But suicide is on the Diagnosis and Statistical Manual of Mental Disorders (DSM5) radar – and of course, its proposed listing as suicide behavior disorder is nonsensical and is made up à la the Mad Hatter.

Controlling healthcare costs

Despite trying to engage in distractions and diversions during every waking moment and engaging in supposedly cognitive and memory stimulating reading (I can’t concentrate, can’t comprehend and can’t retain much info, so consider everything I write with a healthy dose of skepticism), I am increasingly experiencing noticeable memory lapses and episodes of confusion.  The memory lapses are annoying and disheartening.  The confusion is frightening.  Because no one was interested in learning about those problems and instantly dismissed them as “due to the depression”, I am left to my own devices to manage them. Enter Google.  There are self-assessment tools which purport to distinguish between dementia and depression in memory loss.  I tried them out and came away with a 100% alignment with depression.  However, these tools, and the physician feedback I received, conflated correlation with causation.  The real answer is that no one knows. After a winter of experiencing much more back and joint pain, the inability to self-plan and perform even a basic yoga practice, and a months long stretch of not leaving the bed except for bodily functions needs, I find myself so fatigued, dull, and slow that forcing myself to stay alert, attentive and mobile is a monumental task.  And really, since I do not have any obligations to work, socialize or contribute in any way, no one cares or is affected, which brings me a perverse sense of relief of not failing anyone.  When all of society yanks those away and sends you off to a life of dying and social death, this apparently is the benefit. (For all of you psychiatrists who found your “EBM” on that most medically scientific principle of false hope and optimism serving as a default component of “insight”, this is it for optimism and flexible thinking.  Insight I’ve got in spades.) I have struggled to attend scheduled volunteer activities.  But I think I am bringing a poor benefit/risk ratio to the organization.  I can’t perform much of the physical work, and sometimes I can’t remember the very simple instructions to carry it out. The people I’ve met are seriously smart, wise, witty, knowledgeable and committed to the goals and work.  The leaders lead well (coming from me, that’s the equivalent of the Nobel Peace Prize).  Two of these people are dealing with immediate end of life issues, and I try to be a reliable and comforting presence.  That, at least, I can offer and carry out. So back to self management.  I started looking around again for resources and strategies to try.  Because I root around in PubMed, am located in a city where a vast amount of clinical research is occurring, and have a sense of what I need in the way of outcomes, I called the HMO and asked to speak with the mental health case manager.  The marketing and sales people weren’t happy with that.  The person I spoke with was sullen and only after repeated requests and my refusal to give her clinical info was I transferred.  And I got the same woman who when I first called to find a psychologist with expertise in both PTSD/trauma and depression gave me four names where either the person was no longer in the plan or was outside my ability to travel. When I called to report this and ask for appropriate options, she became belligerant and defensive, and so I ended the call since I had already been through the provider list and discovered that there weren’t any at all who met the above criteria. This time, I asked her if she knew of any research or clinicians who dealt with ketamine for severe depression, or with rapid responses to severe depression.  She started in on the spiel that it wouldn’t be paid – it was experimental.  After a few minutes of this abuse – no referrals, no answer,  I told her I’d had enough and hung up. Ten minutes later the police were at my door.  Luckily, my computer screen was on and open to the complaint and disenrollment line, the coffee pot was full, and no weapons were    in sight (that last one is a joke).  The sergeant grilled me about what I had said that “would make her call”.  I explained about inquiring about the ketamine research.  I offered him the phone number to call the woman.  He couldn’t get past the telephony.  I had to sign a form declining emergency transport to the ED. The officers declined coffee, inquired as to the rent I pay for this attic dump, rolled their eyes at the response, and then changed the conversation to “we have to do our jobs.” I replied that experiencing public humiliation (lovely lights, multiple police cars and ambulance in the drive and street) and terror (nothing like having 5 uniformed and armed men on your doorstep banging on the door and demanding to be let in.  NOW.) was obviously what the HMO’s objective was, and they agreed. Which is just the latest experience which illustrates why I still have no health support, no trusting relationship with anyone, and no hope of finding same. What I ended up doing was perusing the research studies for chronic pain and finding several that are non-pharmacologic and low risk to enroll in. I was assigned to the treatment arm of two, and two more are simply looking at different biomarkers and immune responses.  I’m an easy stick, so I’m happy to donate a little serum to that cause.  However, one study requires a combo PET/MRI along with an arterial lineinsertion.  Having been on the managing end of those before as a critical care nurse, I think receiving one (they are uncomfortable at best) is a dose of my own former medicine. I wasn’t permitted to disenroll from the HMO.  The abusive case manager is still a “valued employee”, and I effectively have no health insurance, because there I will not provide any information to, use any provider affiliated with, or voluntarily use any aspect of that HMO’s products and services.  They really have the keeping costs controlled portion covered.  Abuse, terrify and threaten enrollees, collect their premiums and watch the profit margin soar. And the research compensation (for “subject “expenses”) will pay for dental and vision exams.  At least those don’t come with threats of imprisonment and assault and battery. (Optimism and hope, psychiatrists.)

“The only one.”

English: Consequences of whistleblowing, from ...

Update:  NPR just published a compelling story about Mr. Boisjoly, and it includes two audio interviews- one about his whistleblowing and one with his perspective after the fact. Listening to NPR’s Howard Berkes talking With Roger Boisjoly In 1987 is incredibly heartbreaking.

I am ashamed that I have not always intervened to stand with those who stand alone.  Now I am a liability to others.  A pariah is not a help, but just more weight dragging the person farther down the rabbit hole.

Read the NYTimes’ activist obituary, if there is such a thing, and feel just a bit of what this man experienced.

Six months before the space shuttle Challenger exploded over Florida on Jan. 28, 1986, Roger Boisjoly wrote a portentous   memo. He warned that if the weather was too cold, seals connecting sections of the shuttle’s huge rocket boosters could fail. “The result could be a catastrophe of the highest order, loss of human life,” he wrote.

Mr. Boisjoly’s memo was soon made public. He became widely known as a whistle-blower in a federal investigation of the disaster. And though he was hailed for his action by many, he was also made to suffer for it.

Mr. Boisjoly … died in Nephi, Utah, near Provo, on Jan. 6. He was 73. His death was reported only locally at the time. He lived in southwest Utah, in St. George. His wife, Roberta, said he recently learned he had cancer in his colon, kidneys and liver.

But before then he had paid the stiff price often exacted of whistle-blowers. Thiokol cut him off from space work, and he was shunned by colleagues and managers. A former friend warned him, “If you wreck this company, I’m going to put my kids on your doorstep,” Mr. Boisjoly told The Los Angeles Times in 1987.

He had headaches, double-vision and depression, he said. He yelled at his dog and his daughters and skipped church to avoid people. He filed two suits against Thiokol; both were dismissed.

He later said he was sustained by a single gesture of support. Sally Ride, the first American woman in space, hugged him after his appearance before the commission.

“She was the only one,” he said in a whisper to a Newsday reporter in 1988. “The only one.”

His obituary lists family.  I hope they brought him solace and comfort.  Families mostly don’t survive intact. He was only 73.

The sole study (small, Australian) that looked at the health effects of whistle blowing listed 17 of 35 people admitting to suicidality.  The suicide rate couldn’t be ascertained because the study was done in questionnaire format and only used a single sampling. But adverse significant health effects were 100%.

100%

I know – you don’t believe me because you are a GOOD person, and you live in a society with safety nets for this type of thing. But here’s the gist of it:

OBJECTIVE–To examine the response of organizations to “whistleblowing” and the effects on individual whistleblowers. DESIGN–Questionnaire survey of whistleblowers who contacted Whistleblowers Australia after its publicity campaign. SETTING–Australia. SUBJECTS–25 men and 10 women from various occupations who had exposed corruption or danger to the public, or both, from a few months to over 20 years before. RESULTS–All subjects in this non-random sample had suffered adverse consequences. For 29 victimization had started immediately after their first, internal, complaint. Only 17 approached the media. Victimization at work was extensive: dismissal (eight subjects), demotion (10), and resignation or early retirement because of ill health related to victimization (10) were common. Only 10 had a full time job. Long term relationships broke up in seven cases, and 60 of the 77 children of 30 subjects were adversely affected. Twenty nine subjects had a mean of 5.3 stress related symptoms initially, with a mean of 3.6 still present. Fifteen were prescribed long term treatment with drugs which they had not been prescribed before. Seventeen had considered suicide. Income had been reduced by three quarters or more for 14 subjects. Total financial loss was estimated in hundreds of thousands of Australian dollars in 17. Whistleblowers received little or no help from statutory authorities and only a modest amount from workmates. In most cases the corruption and malpractice continued unchanged. CONCLUSION–Although whistleblowing is important in protecting society, the typical organisational response causes severe and longlasting health, financial, and personal problems for whistleblowers and their families. (emphasis throughout is mine)

I know how difficult it is to stand alone and support a person who has been ostracized.  There is real risk to do that.  So like other whistle-blowers, I don’t ask, and I never expect it. Moreover, people will not TOUCH whistle-blowers.  Whistle-blowers are literally toxic. That is why Mr. Boisjoly was so profoundly TOUCHED by Dr. Ride’s gesture.

But, hot damn, Sally Ride stood there and HUGGED him.  In public. If that isn’t a meeting of heroes, I don’t know what is. Funny thing is that she retired from NASA later that year, and in 2002, she was appointed to the Space Shuttle Columbia Accident Investigation Board. Accidents still happened.  Same old boring story – multiple Swiss cheese systems failures because the people advocating for time out and caution were over-ridden by those who gun always for the shareholders’ (lobbyists/politicians and their corporate overlord shareholders) bottom lines.  Sacrifices always have to be made by those who will never come into contact with the bottom feeders liners.

Professor Liam Donaldson, the chief medical officer for England’s National Health System, wrote,

We should “applaud heroes, and hope they are among us, but to base our hope of remedy in ordinary systems on the existence of extraordinary courage is insufficient.”

I’ve pretty much scoured the literature, and no one addresses whistle-blowing, ostracism and suicide.  No one addresses the life ruination, the total and complete losses, and the resultant world goes on while leaving the whistle-blower (and surviving family, if any) in literal limbo.

And really, it’s the perfect crime.  Because it’s like Holmes’ dog that didn’t bark.  No one notices the absence of whistle-blowers.  No one sees them missing in group photos, nor misses their names in employee recognition events, nor has any notion at all about their well-being. Much better than Jimmy Hoffa’s demise with that pesky media and all keeping his name alive and the issues addressed.

Whistle-blowers are disappeared much more cleanly and completely than any CIA black site prison. The torture leaves no mark.

Everyday ostracism

What is it like to be ostracized?

Silent treatment, social exclusion, social death, etc., are all “soft” terms which refer to ostracism.  But most people only get a brief taste of ostracism before their distress leads them to seek to alleviate the experience.  When truly ostracized, there is no one to contact, no ear to bend, no hand to seek. No solace, no understanding, no healing – just ceaseless nothing.

I have no emergency contact to list.  I can’t “express my end of life wishes” because in this state, only a healthcare proxy is recognized.  I have no one to serve as my representative, and so only have a living will form on file which will be ignored should I become unable to express my wishes directly.

I speak to no one on a daily basis.  The extent of my interactions with people is to say please and thank you to clerks and bus drivers.  No one voluntarily speaks to me – ever. When my landlord responds to a rare request of maintenance with a surly, “if you don’t like it here, leave”, I have nowhere to go TO. I have no reason for staying, either. Permanent limbo.

No one calls or mails.  The only reason for my phone is to be able to call 911.  I also receive the rare robot call to verify an appointment. I have no references, no network and no way back IN. Permanent impermanence.

It means that I only go to places which tolerate me, as I am not welcome anywhere.  No one ever returned my calls or responded to invitations to meet socially.  I learned to stop initiating contact because it was – and always will be – unwanted. Permanent undesirable OTHER.

The first time someone turned their back and hurried away from me so as not to be seen with me was confusing, hurtful and humiliating.  I learned to get used to it and to avoid anyone familiar because to be seen with me might be harmful to them in terms of their job security or their own risk of social exclusion. Now there is no one who recognizes me at all due to time, aging and general forgetfulness – I have no meaning for anyone to remember. I am already dead and forgotten to everyone I knew.

Ostracism is lethal, but it is clean, bloodless, non-violent.  It is the absence of action, the withholding of affection, the denial of another’s very existence.

I am untouchable, unlikeable and unlovable.  This is my place – no place.  And my life – no life. There is no comfort, no compassion, no companionship, no humanity.  It is a complete void. To be deliberately untethered from the world is to experience a form of death, but one with eyes wide open and all sense unfortunately registering during every waking moment and throughout dream sleep.

It is inhuman, and it is my present and my future.

My voice is unwelcome.  I have been rendered worthless, purposeless and without meaning.  Predictably, there will be no comments here or discussion anywhere, not because of moderation, but because as soon as the reader gets the gist of this, they (you) will hurry away.  It is repulsive and dreadful to confront this, and the reaction is the same as if happening upon someone obviously infected with an untreatable fatal disease.

That is what it is like to be ostracized. No one to contact on 9/11, and no one who contacted me.

Never forget, indeed. As if I could.

National Distress Is A National Disgrace

I remember the Tuesday in September.  The morning was crisp, clear and with eye-watering bluest of blue skies.  I had already finished morning barn chores and was in the house having coffee, checking the net and listening to the tee vee.  For the next three hours, I watched the sky overhead where normally the aircraft were in their final landing pattern turnaround to the local metropolis’ airport gradually clear of all thing winged and rotored.  The silence and stillness was ominous and dreadful, even though the sounds of nature could finally be heard as intended.

The US on that day, could have moved forward by examining the hows and whys of terrorism.  It could have held steady on the solid bedrock of tolerance and inclusion, dignity and respect for all.  It could have made conditions permanently inhospitable to terrorism by not condoning and allowing bigotry, bullying and alienation.

But instead, the US was led by the nose in exactly the opposite direction by Dick Cheney, ostensibly the president in deed if not in title, George W Bush who never had a single edifying thought, but instead sought retaliation, retribution and revenge for deeds real and imagined, the Cabinet of fundamentalist Christians and lobbyist-tainted hangers-on – power and control mongers all, a Supreme Court which is firmly Corporatist and devoid of human decency, a media which is commercially bought and paid for to produce “what the viewer wants” – meaning what the viewer watches/reads that leads to advertising revenue, and a willfully ignorant citizenry which indeed paid attention to all of the above and neglected to apply critical thinking and adequate skepticism to the calls for war, violence, national paranoia, suspicion and a (permanent) suspension of the rights guaranteed in the Constitution.

Instead of building a welcoming and open society, we have let it go to wrack and ruin.  Instead of educating thinking productive citizens, we have trained a nation of gullible test takers.  Instead of building on the classical virtues, we have a nation of individuals that don’t know the first thing about voluntary cooperation, collaboration and compassion for the greater good and for our fellow humans.

We could have spent our dollars on research, new technologies, renewable energy, professional growth and development, infrastructure renewal and development and transportation growth.  We could have invested in our citizenry with healthcare, education, healthy-based communities and in the liberal and fine arts.

Instead, we have funded wars, terrorism, global arms, an enormous, off the books contracted spy industry, state-sponsored violence and government disruptions.  We have criminalized mental illness.  We have made prisons the largest growth industry in the US. We have made over one third of Americans too poor to afford necessary health care.  We have turned out a generation of Americans who are ill prepared to be engaged and informed citizens and who do not have the ability to be successful in a trade or profession.  We have neglected everything from the air we breathe to the food we eat, the water we drink to the ground in which our crops are grown.

We have gone from a two party political system to a one party, corporatocracy.  There isn’t any point in voting, as there is no one to vote FOR as a legitimate representative of the constituency.

We are constantly surveilled via cameras, data bases and undisclosed programs and organizations.  We are extolled to “see something, say something”.  Everyone has been made into an out group. We are prompted every day in many ways to be “alert, be aware” and be suspicious of everyone and everything around us.

On this day of reflection, I mourn for the lives lost on September 11, 2001, as well as for all of the lives lost in Iraq, Afghanistan, & Pakistan by both military and civilians.  I mourn for those affected by any act of terrorism.  I mourn for alienated people who react to ostracism with extremism.  I mostly mourn for the loss of the Republic.  Franklin said that it would last only “if you can keep it”.  But none of us did, and it’s gone.

What’s in its place is a worn out shell filled with a people made very weak and seemingly still without a will and the means to try to take it back.

This is a demoralized people, and more and more of its inhabitants are becoming hopeless about it because of their seeming helplessness and the betrayal by those who promised, hope, change, transparency and equality.

And as more citizens are deemed to be burdensome by politicians (failure to extend unemployment, criminalization of homelessness, retrenchment of Medicaid and SCHIP, the general promotion of ostracism), will the national collective perception of thwarted belongingness propel civil unrest or violence?

I bring this up because as the two fundamental conditions for people to choose to act on suicidal ideation, on a large scale, I wonder what actions people might take when these conditions become intolerable to bear. Kip Williams discusses the final phase of ostracism when coping has failed to produce re-inclusion and affiliation as resignation (ostensibly to one’s fate as permanently ostracized – ed).

This is when people who have been ostracized are less helpful and more aggressive to others in general,” he said. “It also increases anger and sadness, and long-term ostracism can result in alienation, depression, helplessness and feelings of unworthiness.”

Williams is trying to better understand how ostracized individuals may be attracted to extreme groups and what might be the reactions of ostracized groups.

“These groups provide members with a sense of belonging, self-worth and control, but they can fuel narrowness, radicalism and intolerance, and perhaps a propensity toward hostility and violence toward others,” he said. “When a person feels ostracized they feel out of control, and aggressive behavior is one way to restore that control. When these individuals come together in a group there can be negative consequences.”