Psychiatric survivors, labels and me

If any organism fails to fulfill its potentialities, it becomes sick. William James

Ω

The deleterious effect of evil, pernicious, stigmatizing labels is at the core of psychiatric survivor discourse™, so of course it makes me wonder why I don’t care about mine so much, like — what am I missing here, am I insufficiently outraged about a civil rights injustice?!
Borderline, Bi-polar, Schizophrenia, these official stamps of psychiatry will lead to life of ruin, they say, while saying not so much about the label that actually got them committed. Puzzling, but later for all that. The thread on BPD at the only blog that matters has me head in a spin.

I identify with borderlines, my life’s been filled with them, I have it in me, it’s a hellish disorder. I’ve only seen doctors in offices. In the room, every diagnosis came at a snail’s pace by reluctant treaters who always provided the caveat that what they do are “diagnostic IMPRESSIONS” — their best opinion, that others might not agree with, including me. Fair enough. Over many years 3 different diagnosticians gave me a Cluster B (Dramatic) Personality Disorder Not Otherwise Specified, all of them working independently without reading each others notes, and all of them placing an AXIS I diagnoses as the primary concern, whether major depression, bi-polar, PTSD, hysteria (conversion disorder) or some kind of schizophrenia. The docs I saw regularly who presumably knew me best were adamant that I do not have BPD, and I wanted that diagnosis, to feel closer to the people I love, and the musicians I relate to, all the luminous, sullen and delicate cutters.

I just last week sat down for the first time to read the opinion of the psychiatrist who evaluated me for the Social Security Administration. It’s been sitting here seven years and I’m aware that I have feelings about it before even reading it, the language is very sobering. I saw this SSA psychiatrist for 90 minutes and turns out he settled on “a long-standing and well-documented history of borderline personality disorder” with the following attached:

Dr. Aitcheson’s testimony is well-supported by the objective medical evidence, which establishes a deeply ingrained and maladaptive pattern of behavior associated with oddities of thought, perception, speech and behavior, … extreme difficulty getting along with others…panic attacks, psychotic features, vegetative states, hypersomnia… emotional lability as well as intense and unstable interpersonal relationships and impulsive and damaging behavior. This symptomatology has resulted in marked difficulties in maintaining social functioning, marked difficulties in maintaining concentration, persistence, pace, and repeated episodes of decompensation, each of extended duration.

I’m supposed to be offended by that? It’s the truth. I guess I could be offended, but appears I have a rather full plate to be upset by something so removed. I mean, it seems removed; I have my life and I have these labels. Now I finally have one that makes me chestpuff, I’m in with the out crowd.

I don’t care. That’s the problem, I am perceived as falling short in the victim identity. But listen, schizoaffective disorder was real tough on me, due to all the research it requires, but okay fuckit, overall I have no personal issues with labeling, I’m not outraged by the iffy nosology in psychiatry because the iffiness has been established for me by psychiatrists throughout my treatment course. Now I’m getting shit at Furious Seasons because what happened to me just don’t sound right. It’s a competition, this shit right here.

I feel protective and territorial about my newfound BPD label and don’t like how things are going over there. I am nobody’s victim and am sorry to say have always felt supported by my treaters, but do hang on to anger for the lobotomy and expect I always will. My gramma was the only one in that house who loved me, I saw what it did to her. Saw what psychiatrists did to my whole family, who, hang on a sec, unlike me were all involuntary patients. I guess today they’d be psychiatric survivors, since they were forced into asylums and treated against their will.

The difference between voluntary and involuntary patients is something. Seriously, cartoon king Szasz got one thing right.

Still, I am against the BPD dx for all the right reasons. People are negatively effected by that specific label in all kinds of specific ways and they don’t like it, and that should be reason enough to say it’s got to go. Period. But none of these DSM labels, invoked like mantras are what I look for when psychiatric survivors say they are sharing their feelings about what society thinks about them. The label they avoid is the one I’m most interested in hearing about  and what they do with it.

Yeah. What’s it like to be considered dangerous by the powers that be, and is it too late for me to get some of that juju?

The sole justification for involuntary commitment. You must be found to be a danger to self and or others. You might think that would make some impact on a person, an activist, a truthteller, but damned if I’m onto that discourse, in fact I’m seeing more like a taboo around meaningful discussion in the psychiatric survivors, but hey I’m borderline now, I get to stir shit up.

I realized something the other day, how the same thing happens when visiting a General Practitioner for the first time. The Physicians Assistant does the standard intake on medical history; surgeries, cancers, allergies, heart disease, mental health issues? “Yes,” I reply breezily, I’ve been treated for psychiatric conditions. “Any hospitalizations?” Why do they always look up and ask that? They do it every time, ask and look up, make eye contact and hold it.

Any hospitalizations for mental illness?

They are trying to gauge how much they need to be on guard in my presence. I guess we’re all doing that to some extent, but this makes it rather stark. I’ll remember next time to say “Nope, you’re safe!”

As am I, so far at least. I imagine that things could be different for me.

Catch a fire

It’s not everyday reading something on the Internet can move me to tears, but I’ve given up hope on seeing something like this post (and commentary) at Whiskey Fire. The study is not yet published and I know it only begins to scratch the surface but for the first time since the tests were done on me I have hope, if not for myself I can imagine glad tidings for tomorrow’s little Dickens.

When the neuropsychologist laid it out for me 10 years ago I was crying and he was almost crying, because he couldn’t answer my very pointed questions and account for the disparities in my mental examination. An evaluation spanning eight hours over two days, as comprehensive as it gets, followed by a 25 page report and two hour debriefing and still something missing hangs in the air. In the end I knew that he knew and we both knew what I needed to hear that he couldn’t say. What I didn’t know was that he couldn’t say it because there was no supporting cognitive science to make our unspoken hypothesis official in a formal setting. Correlation is not enough to move the world off its ass, but I have had enough correlation to last a lifetime, and that time is running out. Catch up with me.

He tried to make me feel better like Jake the Snake talks at Whiskey Fire — it’s not a life sentence, keep building up strengths, focus on your incredible resilience and amazing inner resources. Oh please. Show me the science.
Now we’re talking. It’s a start.

“This is a wake-up call…these kids have no neurological damage… yet, the prefrontal cortex is not functioning as efficiently as it should be….researchers suspect that stressful environments and cognitive impoverishment are to blame…The study is suggestive and a little bit frightening that environmental conditions have such a strong impact on brain development…”

Suggestive and a little bit frightening indeed.

I try to praise the mutilated world

I often wonder what it will look like to reach the point of not just surviving my misfortunes but being simply and profoundly grateful for every single thing that has ever happened to me. And why people who want things like that are so perplexing to those who don’t. Those who wonder, in their golden ways what’s so funny about gallows humor, the sole comfort of those who’ve escaped the hangman and an affront to those who have no knowledge of his existence.

Welp, there it is, in black & white, no less.

Thanks

by W.S. Merwin

Listen
with the night falling we are saying thank you
we are stopping on the bridges to bow from the railings
we are running out of the glass rooms
with our mouths full of food to look at the sky
and say thank you
we are standing by the water thanking it
smiling by the windows looking out
in our directions

back from a series of hospitals back from a mugging
after funerals we are saying thank you
after the news of the dead
whether or not we knew them we are saying thank you

over telephones we are saying thank you
in doorways and in the backs of cars and in elevators
remembering wars and the police at the door
and the beatings on stairs we are saying thank you
in the banks we are saying thank you
in the faces of the officials and the rich
and of all who will never change
we go on saying thank you thank you

with the animals dying around us
our lost feelings we are saying thank you
with the forests falling faster than the minutes
of our lives we are saying thank you
with the words going out like cells of a brain
with the cities growing over us
we are saying thank you faster and faster
with nobody listening we are saying thank you
we are saying thank you and waving
dark though it is

Spectacle: this word is an eyesore

You can’t see anything from a car; you’ve got to get out of the goddamn contraption and walk, better yet crawl, on hands and knees, over the sandstone and through the thornbrush and cactus. When traces of blood begin to mark your trail, you’ll see something, maybe. ~ Edward Abbey

I found myself wandering in traffic yesterday, cars whizzin at 40 mph, swerving, horns blaring, and OH SNAP I’m standing in the middle of a street, lost in reverie.

I closed my eyes, took a deep breath and burst out laughing. It’s funny, imagining what it must be like for people who never end up in life threatening situations, for whom life threatening situations just never happen, while for others it’s all that ever happens. And it does just happen, nothing you set out to do, more something you’ve been conditioned to do, and over the years take steps to unlearn, until that fateful and inadvertent gap in vigilance, mixed with the sense that you’re probably indestructible by now anyway.

Home again, happy and safe with my stereo, cats, coffee and cigarettes, I could reflect on events and figure it all out, but that would be going against the received wisdom of what to make of people labeled like me. We’re just not deep enough, lacking of insight and given to exaggeration, unreliable personal historians, whose experiences are meaningless symptoms of severe and persistent mental illness, and as such completely divorced from reality, which is why I keep chasing the documented evidence, there’s no denying the records were kept. One day we will free the bound periodicals.

I heard from my living brother Marky this week, first time in ten years. I learned most of my family’s alive, if sad, incoherent, in treatment, in foster care, stumbling, blind, and that’s for real, stone blind, he said, the one I used to call Bestdad, mom’s second husband, Gordy, he just up and went blind some years back. A karmic cliche, perhaps, but nothing I would wish on the man, who really did do his best by me, within certain characterological limitations. He stopped himself when he was about to molest me, that’s the truth, and all the facts matter, not just the bad. I woke up with him pressed against me and moving, then he shifted his motion and made it safe and fatherly. He could have gotten away with it, there was nothing stopping him, I was ten, didn’t say boo, never understood anything about what was going on. He’s moving against me one minute, then out of nowhere stopped in his tracks, broke down in sobbing shock and apology and grief so sorry I cried too. Probably one of the best things that ever happened to me growing up, seeing one weak man compare so favorably to the ones who came before and the others still to come. He left for good the next day. Some parents do that, make unintelligible, drastic changes without explanation, as if kids don’t think, don’t provide their own context, don’t invent, for the same reason adults do, but unlike adults have no one to blame but themselves. Thanks for waiting til I’m old enough to know better, go blind in both eyes some more, I can say that’s a mystery, don’t look at me.

This wasn’t on my mind yesterday when I found myself walking in traffic. I was thinking about that Hawkins boy who killed 8 people at a shopping mall. My brother Ricky’s birthday is coming up, even though he’s been dead a long time his birthday is a dependable stressor, it is for everyone in my family and we all act weird when he moves into our fields. That was one of his lifelong goals, to take out a shopping mall, and one reason our mom had him forcibly committed, it seemed like he really could do it. Objectively speaking, yes. That did not happen, no thanks to him being forcibly committed, which was just a pause in his trajectory, if anything, the humiliation of being declared insane, a very public ceremony, only made him more determined to have his angry public revenge. These are my impressions, I am shaping experience, an exercise in meaning-making that the powerful negate because power prefers the void. Not for themselves, though.

I was remembering the first time he shot someone I was seven, he was twelve, a neighbor boy named Terry played golf in his yard the same time everyday after school. Rick took Bestdad’s hunting rifle and scoped Terry out for a couple days, just stood at the window with the boy in his sight, then on the third day he shot him in the face. I was in the ravine that day, my underground haven, dozing on a bed of crushed leaves, inhaling burnished wood and looking at the sun filter through the golden trees in certainty that no one had any idea where I was when my brother Mark woke me up and said you have to come home, Ricky shot Terry, he didn’t mean to, it wasn’t on purpose. I got up and followed behind Mark who never looked like that before, stricken, gray, muttering to himself all the way home; he didn’t mean to, it wasn’t on purpose, it had to be an accident, had to.

A few weeks later Mark was caught laying out with arms akimbo in the middle of Thompson Avenue, while a group of schoolkids stared in amazement as horrified drivers slammed on their brakes to avoid running him over. There were long tracks where the cars made rubber, and punishing adults asking what in gods name possessed you to do that? Mark explained it by saying he was just playing chicken, and from that day on boys will be boys became the official story, no one ever asking why he wanted to die.

I couldn’t understand why the police were wearing brown, that’s all I could think when we entered the house. Two policemen wearing brown taking Ricky away, because he shot a very sweet neighbor who plays golf everyday. You look for clues to explain what’s happening, something to tell you it’s all a big mistake, something askew sticks out and that was it, police dressed wrong isn’t right, policemen wear blue uniforms, these police are dressed in brown, this must be a dream.

While walking yesterday I was thinking about what boys can do instead of shooting people, and what will happen when the redemptive properties of imagination are misapprehended as symptomatic of an underlying psychiatric disorder requiring outpatient commitment. The way ignorance that doesn’t recognize itself as ignorance looks at something it doesn’t understand, and says this must be stopped.

I don’t know where I’m going with this, but just turned on the Saturday afternoon movie, and see they’re showing Taxi Driver today. I guess someone up there is watching over us.

Try To Praise The Mutilated World

Try to praise the mutilated world.
Remember June’s long days,
and wild strawberries, drops of wine, the dew.
The nettles that methodically overgrow
the abandoned homesteads of exiles.
You must praise the mutilated world.
You watched the stylish yachts and ships;
one of them had a long trip ahead of it,
while salty oblivion awaited others.
You’ve seen the refugees heading nowhere,
you’ve heard the executioners sing joyfully.
You should praise the mutilated world.
Remember the moments when we were together
in a white room and the curtain fluttered.
Return in thought to the concert where music flared.
You gathered acorns in the park in autumn
and leaves eddied over the earth’s scars.
Praise the mutilated world
and the grey feather a thrush lost,
and the gentle light that strays and vanishes
and returns.

Adam Zagajewski
Translated by Renata Gorczynski

NAMI agenda still my ruling nightmare

And you know what, I’m gonna leave off this for awhile, I can’t handle it, there’s a lot of positive stuff going on in the movement and I’m gonna spend the next couple days drinking it in. But first let me show you my pain, from an email I sent to TMA yesterday, and we’ll call it tabled for now, and let things simmer while I get back on track.

Hey. I am still talking to the folks on that thread at Icarus, it’s calming me down. I’ve spent the last couple days researching NAMI and am seriously triggered, sobbing, grief trauma stuffings pouring out. It’s all so symbolic. I know you will understand, but I can’t put it straight yet. NAMI is deception, the embodiment of what I lived with, not in concrete details, but psychologically, this is an organization about hugely dysfunctional families that gang up on the weak link as expendable, all a ruse to keep from dealing with interpersonal violence, and they’re happy to destroy this person they denote as a loved one for whom there’s no exit once inside the psych system, no healing for the family unit because they’re avoiding the source of the real problem, the real interpersonal dysfunction. I discovered that NAMI attacks family therapy, just as it attacks all psychosocial intervention and critics of biopsychiatry. They’ve put themselves completely out of reach of the typical programs geared toward the typical family recognized as embroiled in typical domestic violence, because they’ve convinced everyone of their interpersonal innocence, their kids are delusional, have genetic diseases the ‘rents can’t be blamed for, it’s all smoke and mirrors, and the media buys it. NAMI is leading the culture around, held up as the authority on mental illness, and the public doesn’t understand the true focus of these anti-stigma campaigns is on abolishing prejudice toward families, not the “delusional, mentally ill who don’t know they’re sick”, family support groups are steeped in ideology and entirely funded by AstraZeneca, forcing drugs and ECT on their children, who are right now living in the Matrix, without due process, everyday, you step into the abyss and find it only comes up to your knees.

You know I am sympathetic to the violent mentally ill meme, my big brother, killed who knows how many people. I saw it, I saw us all decompensate over the course of our childhoods, I was there, he was in and out of psych wards and jail, sorrowful mom had him involuntary committed when he was 17 and who knows how much one thing has to do with the other, nothing helped, made him worse, didn’t it. And yes, he was a sadist, but he was beaten and molested as a child, we all have records of broken bones, he had sex with mom at four years old, this is a story, where does his story come in? I’m sorry, I’m just processing so much so fast, I know my thoughts aren’t organized. The thing is I knew all this, right, but it’s being in the same room with them, including the ex NAMI rep I feel attracted to, who is the worst really, and the chief of police, and even our protection and advocacy person kissing ass. We had to introduce ourselves, 20 people and no one identified as a consumer, at a Consumer Council meeting, it was all agency heads and law enforcement. When it was my turn I said I was a “community activist” and the police chief said, “that’s……………….okay,” I felt like such a joke. I’ve been on stage before, doing monologues and poetry readings and on the radio for ten years, I know I can push through the normal stage fright, this isn’t normal stage fright, it’s the assimilating that’s got me terrified. They represent something I don’t want to believe, and am on a mission to get to the bottom of it.

Also Teema, I learned at that meeting that our local MH Authority does not recognize PTSD as a legit mental illness, and do not treat people, including vets who present w/the PTSD dx. It’s like all my fears from 2002 are materializing, and you’d think I’d find that reassuring or something, but it’s crushing and stark, and I am not yet aware of the size of it.

So that’s all I got, but this is a link worth clicking, and y’all can draw your own conclusions.

Thank you for reading, in courage and valor.

Because enduring ennobles we won’t be discussing that

I’m still having a hard time recovering from mental illness awareness week, migraines, can’t sleep and nightmares when I can, plus waking up crying. I woke up and hollered “Molly!” a few hours ago, and I’ve been drinking a bit to take the edge off, which is nothing to me but a clue. Molly Ivins lived in this city, and this week I’m going to walk the streets she walked, the streets she urged us, in her final proclamation, to run into with glee, banging pots and pans, shouting “We are the deciders.”

No, we’re not. Over a hundred google alerts in my inbox last week promoting awareness of mental illness, and not one word about child abuse, because, do I have this right — because NAMI — a family organization — is in charge — do I have that right — in charge of mental illness awareness — NAMI, is that right? Wait, ok, so the ghosts are in my house, my people, my blood, thicker than water, kinship, my loyal perpetrators, no escape, she’s dead and I’m buried, mom without end. This is how it was, invisibility in the family, this is how it is, invisibility in the mental health system, it feels like I’m in the wrong time frame, I don’t even know where I am, it’s all seamless, positively fourth street. I read the pdf files and feel like I’m losing my mind, they use our language, capital “R” recovery — recovery is possible, expect recovery! Recovery from what? With what? Drugs and denial, symptom suppression, fuck you, my symptoms need expression, space, recognition, discharge, that takes skill, competence, — Expect Recovery — I expect Mark Eitzel is on the stereo saving me “Why do you say everything as if you were a thief? Like what you stole has no value, and what you preach is far from belief?”

That’s what they do, steal a thing of beauty and turn it into shit, “It only takes one person to change the world!” Yes and tomorrow we’ll change it back, because we write, another behavior you’ll never begin to understand.

I have to type more about me and the first thing to appreciate is that I don’t want to. This is one reason we remain invisible in mental health policy and even to our own ignorant CBT “solution focused” treatment providers, we avoid the material, and all the fixers in the system collude with us, by failing to educate themselves about traumatized personality development, because they don’t want to look at it either. It’s a human tendency to avoid the dark and depraved, it’s unsettling to sit with, and take it in day after day, it screws people up to listen. It’s about helplessness, people have a problem with being helpless, they can’t change or undo anything, they can only be witnesses, and that’s enough!

The only therapists who are of any use are not available to most of us anymore, the old school, expensive, time-intensive treatment associated with psychoanalysis is what we need, and that is not an option today.

Therapists can’t just ask outright “were you abused as a child?” Because we’ll say no, dummy, we were indoctrinated to conceal, minimize and forget what was happening. We have no language. I didn’t say a word my first year, I drew pictures, gave my therapist collages made from magazines, took her by the hand and walked her outside and pointed at a tree. It takes a year in therapy to prepare to do the work of trauma, to build trust and go at it at a very slow angle. You need an intentional therapist sitting across from you that whole year, who knows what they’re doing, consciously working to prepare you for doing the work you dread.

I have been scared for a long time, I have been thinking about it all last week, remembering troublewaits, when I didn’t even know what I was talking about, just wailing that some undefined they were taking trauma out of existence. Erasing the concept. Now I am seeing it happening. I think. Who is doing this? Is it NAMI? Am I invisible to my allies too? Do others working as activists in mh liberation who know I insist on inclusion of the trauma model know or care why I say that? Tell me, what are my Suicide Survivor Notes about? When I talk about “my hospital records” do you assume I mean psych ward, and not the general emergency room where I went to get my ribs taped up after my NAMI did what they always did? I won’t spell that out every time you know, that was my mother.

Fighting biopsychiatry is not just about getting to the truth, it’s about the specific needs and challenges facing traumatized persons in the realm of mental health, and about making general sense out of personalities that are a real foreign land, which is useful for everyone, but of paramount relevance for people in the provider system. There are maps, this has all been studied and paid for, research and books and movies and songs, and 1200 scars on my best friends arms, programmed to self-destruct, still here, heroically in the way. We are in the system, we don’t always know why we end up in a mental health facility, but I am one who does know what happened to me, and what it did to me, and that there is no cure, and that there doesn’t need to be.

Random? Oh I can do that one

Not a big meme playah, but I got tagged by a certain lovely and inspiring reclusive leftist for the eight random things about me thing, and have been in a pique of inhibition ever since, lord knows it’s not like I’ve ever been coy about sharing. I’ll add a twist and make it random stuff from when I was thirteen, and tag eight others after the jump:

1. I carried a switchblade.

2. Knew I’d end up a disc jockey.

3. Gained a rep for wearing bedsheets as “gowns”.

4. Talked my big brother down from a rooftop where he was shooting out the neighbors’ windows.

5. Slept on abandoned railroad tracks inside Hamm’s Brewery, the bums took care of me. Photos and more here:

The Hamm’s Brewery is the coolest abandoned site Action Squad has ever explored, hands down. It simply has it all: historical interest, multiple interconnected buildings, utility tunnels, artifacts, gargantuan machinery, ancient caves, multi-tiered rooftops and absolutely no graffiti–

6. Became a Jesus Freak, carried 42 bibles on my person. King James Version only, bitches.

7. Took LSD 4 times to no effect whatsoever.

8. Decided to wait for Patti Smith to come along and tell me what to do.

GO RIMBAUD!

I tag Alison, Gorgeous Disorders, Memory Artist, Grizzy, Gianna, Chuckling, Stephany, Ruth at Off Label and anyone else reading this, your blog or mine.