Tag Archives: Health

FROM: THE NEW HAVEN REGISTER May 31, 2014

Connecticut hospitals restrain psychiatric patients at double national average

By Lisa Chedekel, Conn. Health I-Team Writer

POSTED: 05/31/14, 11:10 PM EDT | UPDATED: 1 WEEK AGO

As Connecticut works to improve its mental health system, new federal data shows that hospitals in the state restrain psychiatric patients at more than double the average national rate, with elderly patients facing restraint at a rate seven times the national average.

In addition, the state lags behind in providing adequate post-discharge continuing care plans for psychiatric patients, especially teens and the elderly. Connecticut’s 28 inpatient psychiatric units and hospitals developed continuing-care plans for fewer than 70 percent of patients they discharged from October 2012 to March 2013 — indicating that thousands of patients may have left facilities without adequate treatment and medication plans.

A C-HIT analysis of the federal data, released by the Centers for Medicare & Medicaid Services for the first time, shows that Connecticut ranks in the top fourth of states (11th highest) in the use of physical restraints in inpatient psychiatric facilities — and is the third highest state in restraining patients 65 and older.

Two psychiatric units — at Bridgeport Hospital and Masonicare Health Center in Wallingford — have the 10th and 12th highest rates of restraint use, respectively, among the 1,753 psychiatric facilities nationwide that are included in the federal reports, which cover October 2012 through March 2013.

State and federal guidelines — tightened over the past 15 years, partly in reaction to deaths in Connecticut facilities — say that restraints should be used only in cases of imminent physical danger to a patient or others. They call for less restrictive interventions when patients are acting out aggressively.

But the data show that Bridgeport Hospital, Masonicare and three other Connecticut hospitals — Waterbury, Hartford, Danbury — restrain patients at more than triple the national rate.

James McGaughey, director of the state Office of Protection and Advocacy for Persons with Disabilities, said he was disturbed by both the high rate of restraint use and the low rate of post-discharge plans.

“The numbers are pretty compelling,” he said. “Some of our hospitals have done a significant amount of work on this, but clearly there’s more to be done.”

He suggested that the Department of Public Health, which oversees hospitals and is charged with reviewing annual reports of restraint and seclusion, should “get a little less timid in looking at this.” Hospitals rarely have been cited or penalized in recent years for improperly using restraints, a review of inspection reports shows.

McGaughey noted that the state-run Connecticut Valley Hospital in Middletown has pursued a reduction in restraints and seclusion that has cut its restraint rate significantly in the last five years. The new data show CVH’s rate at .52 hours per 1,000 patient hours — below the statewide rate of 1 hour per 1,000. The national average is .39.

“It’s ironic that our one remaining large state hospital has done such a good job of reducing restraint and seclusion, but you have some very different results at private institutions,” McGaughey said of CVH, which was cited for excessive restraint use in 2007 by the U.S. Justice Department. “What it shows is that it’s possible to address this issue, but you need leadership to effect this kind of culture change.”

Mental health advocates say seclusion and restraint should be avoided because they are traumatic and dangerous to patients and staff.

Alternatives include individualized aggression-management plans, the use of “comfort rooms” or time-out spaces, and one-on-one interventions. Among the innovations at CVH are 22 “comfort rooms,” designed to calm agitated patients, and a reduction in the time interval that a physician’s order of restraint or seclusion can remain in effect, according to a state report.

Yale-New Haven Hospital has a restraint rate of .36 hours per 1,000 patient hours — just below the national average of .39 hours. But its rate of developing care plans for discharged patients is relatively low — 50.36 percent, compared to a national average of 73.5 percent of cases.

Officials at Connecticut hospitals with high rates of restraint say they are working to reduce those incidents, and they stressed that even minimal mobility restrictions, such as soft wrist restraints or brief therapeutic holds, are counted in the federal numbers.

Robert Bernstein, executive director of the Bazelon Center for Mental Health Law, a national advocacy group that successfully sued Connecticut in 2006 to stop housing psychiatric patients in three nursing homes, said he worried that progress made in the early 2000s to reduce restraints might be slipping in some hospitals because of staff shortages and “pushback” from clinicians.

“Some of the procedures put in place may have been weakened, because it’s a lot of work” to use alternative interventions, he said.

Although patients subjected to improper restraint can file complaints, few speak out, Bernstein and others said. Among the exceptions in Connecticut is Pamela Spiro Wagner, a Wethersfield writer and artist with schizophrenia who has cycled in and out hospitals.

In an April “open letter” to the director of a Connecticut psychiatric hospital, Wagner readily conceded that she is a difficult patient — “easily roused to irritability and hostility” — but insisted that her behavior has not warranted her repeatedly being placed in restraints and seclusion, for hours at a time.

“Once you allow staff to use restraints a little, it only takes a little to use them a lot.”

CONNECTICUT VS. THE NATION

Nationally, the states with the highest restraint use are Minnesota, Washington, South Dakota, Tennessee and New Hampshire. For patients 65 and older, only Nevada and New Hampshire have rates higher than Connecticut, which restrains elderly patients at an average of 7.69 hours per 1,000 hours. Thirty-five states have rates of less than 1 per 1,000 hours; the national average is 1.01 hours per 1,000 hours.

The U.S. facility with the highest restraint rate is Park Ridge Health in North Carolina, which reports 722 hours of restraint use per 1,000 patient hours overall. Among facilities that report serving children ages 2 to 12, Lakeland Regional Medical Center in Florida has the highest restraint use, at 200 hours.

The federal data shows Connecticut psychiatric facilities fare well in some categories, including lower-than-average rates of restraint for children and teenagers. Five hospitals reported no use of restraints for any age group: Sharon, MidState Medical Center, Bristol, John Dempsey and Natchaug hospitals.

And Connecticut’s rate of keeping patients in seclusion is lower than the national average, with half of the state’s psychiatric facilities reporting that they did not use seclusion at all. Nationally, South Dakota, Montana and Washington report the highest use of seclusion, defined as involuntary confinement where a patient is prevented from leaving.

But the state’s over-65 restraint rate is fueled by excessive rates at Masonicare (35.99 hours), Bridgeport Hospital (37.92) and Hartford’s Institute of Living (9.19).

Officials at those hospitals say they have taken steps in the year since the data-reporting period ended to reduce restraint use.

This is the first time that quality measures from psychiatric facilities have been made available by CMS. The federal agency does not penalize facilities for high rates of restraint or inadequate discharge plans. Instead, an agency spokeswoman said, the public reporting is intended to encourage quality improvements and help consumers to make informed decisions.

At Bridgeport Hospital, Dr. Ryan O’Connell, vice president for performance and risk management, said the hospital’s geriatric psychiatric unit serves many patients with dementia and behavioral problems that cannot be managed in other facilities. About 18 months ago, he said, the hospital put in place an “action plan” to reduce restraints, including using “comfort” rooms. Also, in January, a new policy was implemented requiring that the nurse manager be called before any patient is restrained.

“We realized we were going in the wrong direction with restraints” and have since seen a “dramatic drop” in their usage, O’Connell said.

Hartford Hospital’s Institute of Living (IOL), which has a geriatric unit for complex dementia patients, has made similar changes over the past few years, nursing director Ellen Blair said. She said restraints are now rarely used, and only for patient safety. The IOL requires that a physician’s restraint order be reviewed every two hours, rather than every four, which is the standard of care.

“We look at our data every single day” to ensure that restraint and seclusion are being used only as “a last resort,” Blair said.

Masonicare’s acute psychiatric unit serves geriatric patients who frequently are referred because of difficult behaviors and aggression, said spokeswoman Margaret Steeves. When restraints are needed, the hospital uses “the least restrictive restraint, which is typically a seat belt,” she said. Masonicare has an interdisciplinary team reviewing restraint use.

Statewide, the Connecticut Hospital Association has been working with the state Department of Public Health to minimize the use of restraints, said Dr. Mary Cooper, the group’s vice president and chief quality officer. She said the new federal data “indicate that there is more work to be done in this area” and will help to identify best practices.

Nationally, the federal government tightened rules on the use of restraints and seclusion between 2001 and 2007, including time limits on physician orders and strict documentation requirements. The changes were prompted by a series in The Hartford Courant, “Deadly Restraint,” which documented restraint-related deaths in psychiatric facilities nationwide.

In 2007, the U.S. Department of Justice cited the state-run CVH for excessive overuse of unnecessary restraint and seclusion. Since then, policy and training initiatives have significantly reduced restraint episodes — from 26,290 hours in 2000, to 529 hours in 2012 — a state report shows.

State DPH spokesman Bill Gerrish said the agency collects restraint and seclusion reports from hospitals and works to “ensure that care is appropriate.”

LAGS IN DISCHARGE PLANNING

McGaughey and Bernstein said they were especially troubled by the failure of many hospitals to develop continuing care plans for discharged patients, and to transmit those plans to the next level of care.

Statewide, Connecticut facilities developed adequate discharge plans 69.4 percent of the time — lower than the national average of 73.5 percent. For teens, hospitals transmitted care plans only 55 percent of the time — lower than the national average of 74 percent — and for seniors, just 42.7 percent of the time, below the national average of 56 percent.

Discharged patients are supposed to receive care plans containing their diagnoses, reasons for hospitalization, medications and treatment recommendations.

The federal data shows that 10 Connecticut hospitals, including Waterbury Hospital, Masonicare and Yale-New Haven Hospital, properly transmitted care plans to the next provider in less than half of cases.

A few hospitals — St. Mary’s, Bristol, Norwalk, Natchaug Hospital and Southwest Connecticut Mental Health — transmitted care plans more than 90 percent of the time.

McGaughey said that without continuing care plans directing further treatment, many discharged patients may languish in nursing homes, shelters or land back in the hospital.

“The lack of continuity of care, to me, is a huge issue,” he said. “It’s a pretty brutal business — insurance companies want you to medicate and discharge as fast as possible. The question is, what happens after they’re out?”

Bernstein said the lack of attention to continuing care plans was “jaw-dropping.”

“Those numbers should be at 100 percent,” Bernstein said. “It’s shameful.”

Hospitals with low rates of discharge care plans blamed much of that lag on their failure to document that the paperwork was done.

At Masonicare, for example, Steeves said the 31.3 percent rate of developing care plans was due to problems with the “tracking of the discharge document . . . not that it wasn’t actually sent.”

This story was reported under a partnership with the Connecticut Health I-Team (www.c-hit.org).

COMMENT:

This is the comment that I posted online at the paper a few days after the article was published, (as it happened, while I was a patient being tortured at the former New Britain General Hospital, the present day, Hospital Of Central Connecticut).

Pamela Spiro Wagner: “As someone who has been subjected to more use of seclusion and four-point restraints over the past “decade of change” than in the two decades previous it boggles my mind that anyone would even dare to state that things are improving in CT mental health care institutions. During my nearly month-long captivity in the winter of 2013, the Institute of Living in Hartford regularly restrained me to a bed for as long as 19 hours at a time, without ever releasing me for so much as a bathroom break — I had to defecate in my clothing. I was not even released to eat. When I was not in four point restraints “for not following directions, I was in seclusion, which they called the “Quiet Room” and not seclusion, but by CMS definitions, it was seclusion as I was separated from the rest of the patient population by force, and was not permitted to leave the room I was isolated in.

The one time I did actually saunter away, walk down the hall to look out the window, and return to my non-seclusion Quiet Room, I was punished with immediate use of four point restraints, into which I was placed without a struggle, hoping that would make it easier to win my freedom. Alas, for me, there was no way to earn freedom from restraints I never “deserved.” The entire point was discipline, and that would last as long as the staff wanted me to be in shackles to learn my lesson. There was literally nothing I could do, –stay calm, sleep, quietly ask for release — nothing, until they were finally satisfied that I was submissive enough to obey their orders, some 6-19 hours later. But I had to cry Uncle, and submit to a set of degrading humiliating “debriefing questions” that assured them that I took responsibility for my own being restrained and that my behavior would henceforth conform to their norms.

I was surprised to see Natchaug Hospital being given good ratings of any sort. One of their chief psychiatrists on the Adult Unit, a longtime presence their Emeritus psychiatrist you might say, was so insouciant about this job as to be nearly incompetent, but probably hard to fire even for negligence. HIs name I will not mention. He routinely did drive-by visits with his patients– a wave in the hallway might not be a completely standard morning meeting, but it happened often enough that peatients knew that would be all of this doctor they would see for the day. He routinely discharged patients with GAF scores at or around 60, the highest “global assessment of functioning” that one can have and still be rated “disabled” — not because he knew this level of functioning to be the case, but because it made him and his psychiatric ministrations at Natchaug look good. After all, if person comes in with a GAF in the 20s, and barely able to function, and you discharge him or her a week or two and some drive-by counseling sessions later with a GAF of 60, you must be doing a terrific job, esp for a 75 year old doctor not too keen on using anything like trauma-informed or patient-centered care. I had never left a hospital before Natchaug with a GAF higher than 40, but suddenly I rated a 60….by a doctor with whom I never spoke.

Natchaug Hospital, when the nursing director was Sharon B Hinton, APRN, was a decent place, because she made certain that abuses like restraints and seclusion rarely to almost never happened under her watch. I know, because I was there about three times during her administration. I also knew her when she was Hartford Hospital’s psychiatric Head Nurse at CB-3, where she and her never failing humanity and respect for the dignity of every patient made all the difference in the world. I might have come from an abusive hospital in the early 90s, like University of Connecticut’s Dempsey Hospital, which in those days four-pointed people to an iron bedstead, by shackling them spreadeagled to the four corners of the bed, a stress position that is not just tantamount to but is in fact torture. But I would be rescued by someone finding me a bed at Hartford Hospital, where Sharon would discover me arriving there in tears and tell me, unfailingly,”Its not you, Pam, you did nothing wrong, It is the hospital that treats you badly…We don’t have any problem with you, because we treat you well and you respond to it. When they treat you with cruelty, you respond badly…That’s very normal.”

But as to Natchaug…Bravo if they have done away with restraints completely. They had not done so when I was there last in 2012. Nor with seclusion, which was imposed in mostly a disciplinary and arbitrary fashion. Largely it was used to force medication on loud obstreperous patients or for angry fed-up senior nurses to take out their peeves on patients they didn’t particularly like (e.g. me). I still remember one APRN demanding that I be dragged to locked seclusion, and left there alone (despite all Sharon’s previous assurances that such would NEVER happen, that someone would ALWAYS remain in that room with me if I ever ended up there.. Alas, Sharon had left by then, so rogue nurses like D could have their way…) and when I peed on the floor in panic, and took off my clothes they rushed in to take them away from me, and inject me with punishment drugs, then made me stay for an hour alone on the pee-soaked mats, freezing cold, pretending to sleep and calm myself just to convince them I could leave and not bother anyone. I managed to do so, or at least the APRN D. got over her fit of pique and finally released me, but I was not really calm, and when they finally draped two johnnies over my naked body so I could decently traverse the distance to my room, I left, disrobing as I went…Who gave a damn about my flabby flat behind? I certainly did not. And it served them right if everyone got an eyeful…served them right..

Natchaug’s biggest problem was and probably still is a lack of staff cohesiveness and bad morale between the staff nurses and the well-educated techs/mental health workers who were all very dedicated college grads but were treated like grunts…The MHW’s did most of the important patient contact, but were not trusted to write patient notes, or the notes they wrote were never read, or accorded any import. This was not just despicable but very unfortunate in more than one instance during my stay, as the notes they took personally might have saved me from some terrible misunderstandings and outrageous misdiagnoses that harmed me terribly..

Most places use techs who are trained by shadowing for a day or two, which means, badly trained, if at all…

You have to take all such in-hospital diagnoses with such a heavy grain of salt, you know, even when they are labeled with the words, “THIS IS A LEGAL DOCUMENT.” Because they get so much of fact-checkable, factual material garbled that you cannot believe a word it says. And as for diagnosis, well it is all of it opinion, one, and two, it depends largely upon whether you are a likable patient or a disliked one, what they finally say about you on any given day. No one should have that sort of power over another human being, frankly. And the idea that they can brand one for life with certain psychiatric diagnoses just sickens me.

Be that as it may, my recent last experience was beyond the beyond, at Hospital of Central Connecticut, The old New Britain General…and I expect to go back to talk to someone there about it. I always do And I have much to say to them, after the pain and rawness have worn off a little. They considered it SOP to strip me naked and leave me alone in a freezing seclusion cell without any access to human contact, unless they chose to speak to me over a loudspeaker hidden in the ceiling. If not, I was utterly abandoned, no contact or even view of another human being for as long as they wanted to keep me secluded. They also restrained me, having male security guards four-point me stark naked to the bed, before they had the decency to cover me with a light sheet, even though I begged for a blanket for warmth. (A nurse manager came in and shivered, saying “Brrr its cold in here!” but did they relent and let me have a blanket…No, clearly I was not human, didn’t need warmth.)

This is just the tip of the SR iceberg in CT in the current years, Remember this is happening right now, not ten years ago, or before the so-called reforms. Nothing is getting better. Things are worse than ever, And when you are a patient in these hospitals, you have no help, no recourse, anything and everything can be done to you and you have no way to refuse or say “no”. No one will help you, or offer assistance. They can just grab you and seclude you or restrain you without your having the power to stop them or any recourse to make them pause and reconsider. You are powerless to stop anything…And so they get away with it every time. And once it is done, who will fight for you? What lawyer will take your case if the guards hurt your shoulder rotator cuff, or bruise you up, or degrade or humiliate you? No one….so you are deprived of your human and civil rights, completely, but the hospital knows that no one cares enough to fight for you, so they get away with it each and every time, and they know this when they do it. They have nothing to worry about,….You are just another mental patient, a nobody, a nothing.

That’s what you are if you are diagnosed with schizophrenia and hospitalized in CT hospitals in 2014. A nobody that the hospitals can abuse with impunity and will. Just wait and see if any of this changes…I doubt it highly. They have no motivation to change. They don’t think they are doing anything wrong now.”

Abuse, Bullying, Health

A Blog Post Reply to “Alice”

May 10, 2014 Phoebe Sparrow Wagner 14 Comments

Broken... This is what abuse and bullying does to a person — Broken… Because this is what abuse and bullying does to a person

I think it is time to explain the trigger for my being mute these five days now, and what happened to start the voices unloosing their barrage of hatred on me. In order to do so, I take a huge risk, because I may unleash more of what happened rather than less. But at least part of what happened was real, the trigger was at least, and it disturbed me deeply. I need also to say that when I tagged yesterday’s audio file “abuse” as well as “health” I meant it. It is almost always abuse of some sort, verbal, emotional or physical abuse that triggers the voices and self-hatred has in the past triggered muteness.

So let me be up front: It was “Alice’s” comment five days ago in which she said, “I think you are a bit of a bully”…which was the specific trigger for all of this. Now, as I read through it — reposted below — I see that nothing she wrote has any bearing on either the post she commented under (which I didn’t write) or anything else I have had to say. But first let me take it point by point. Note that Alice’s comments, for clarity, are in color.

Alice, you wrote: “I must say there is no consistency in your writings. You say about how well Yale New Haven Psychiatric – Hospital treated you and the next entry indicates the opposite- how awful they were to you.”

I must write about inconsistencies and the facts as they happened, and I am sorry if that discomfits you, Alice. But the first experience in the early spring was very gentle and positive, and the other, as I wrote before, was brutal. Nonetheless that is not an “inconsistency in my writing” just an inconsistency in my treatment. You must be someone who is very unhappy with the world as the world tends to be “inconsistent.” Even the weather has a habit of changing, at least it is famously so in New England and I suspect that nowhere in the US has entirely “consistent weather.” Of course there are those people who need hobgoblins…

Alice continues on the issue of consistency: “You say you don’t like anti-psychotic medications yet you take them (and you also don’t like anti-depressants – yet you take them…”

In my defense,I think mature adults often do things they don’t like, even taking medications they don’t like. Most cancer patients hate chemotherapy but take the pills etc anyway. I don’t think merely disliking a medication is reason by and of itself not to take it. Nor to criticize anyone for being inconsistent. There are plenty of reasons to do things you may not like. Many people don’t like eating vegetables, but they sure as shooting ought to eat them!

On one other hand, I more than dislike antipsychotic drugs, I deeply distrust them. I do not believe they work. I do not believe they were developed on any scientific basis or are necessary on any but the shortest of short term bases, if that.

That said, on the other other hand, I both took and was forced to take antipsychotic drugs for decades, from the oldest Thorazine and Mellaril at doses up to 1500mg, to weekly IM injections of Prolixin, then on to Clozaril, which nearly killed me, transitioning to seizure-inducing Seroquel to catatonia-inducing Risperdal then eventually to 35 mg of Zyprexa, which made me gain 70 pounds. Given this history, I think I can be excused from blame for withdrawal-induced psychosis when I try to stop my present two anti-psychotic meds, a very real and difficult situation that a growing number of researchers and physicians now acknowledge, including Robert Whitaker and Joanna Moncrieff among others.

Alice notes: “for example why would you need your Zoloft reinstated when you had your sudden “depression” after it was taken away. )I thought these pills didn’t work.”

What I said was that SSRI’s do not work as their developers state they do. They do not relieve depression by selectively inhibiting serotonin re-uptake at the pre-synaptic neuron. Yes, they DO selectively inhibit this process, but it isn’t necessary, and it isn’t an anti-depressant mechanism. Why? Because the serotonin levels in depressed people’s brains have been shown NOT to be lower than anyone else’s. If you had read what I wrote, you would have understood that I indicated that SSRIs are not placebos, they are not inactive substances, so they do something. They are psycho-active, after all they alter serotonin levels! So they change something in the brain, and that change — any change – may make a depressed person feel better, temporarily. But I have never met anyone who felt permanently better on a single level dose of an SSRI and no one knows for certain what these drugs are doing. I think this is problematic. But I especially think it is FOUL and dangerous to tell a depressed person that they have a chemical imbalance of serotonin that the drug is regulating. That is just a downright lie.

As for my sudden “depression” when my dose of 75mg of Zoloft was lowered? Who can say what happened? It may have been that the nurse/director who was my protector at the hospital was away for a few days too at the time, and I sensed the difference…All I know is, well, what happened. I only report the events, neither justifying them nor attempting to make the case that Zoloft “works.” In fact, 6 months later at Yale, when I was down to 50 mg of Zoloft, Dr Milstein felt that I should just come off it entirely, which I did without difficulty. I have no wish to start it again

Oh yes, Ritalin you take but that’s for a “physical” problem so that’s Okay.

Yes, in fact that is the case. My question is, why is it any of your business and why do you care?

Alice, you then proceeded out of the blue to write: “I think you are a bit of a bully and I think that you think you are profoundly smart. But I’m not taken in…………”

First I want to say, Alice, that I’m not too concerned about my intelligence…I’m certainly not worried about you think about my intelligence, in any event. But it was here, where you called me a bully, that the voices were triggered. Instantly, specifically, instantaneously. In fact, the minute I read those words, the trouble began. And even though I managed to pen a calm enough response, my heart started beating rapidly and the voices muttering louder and louder in the background even as I wrote. I cannot explain — though of course this whole post is trying to — just what happened. I felt my ears explode with the pressure of deep sea diving and as if a huge bell were clanging in my head.

You called me a bully. Me, a bully? Why? Were you just reaching for the worst name you could call me? Certainly, it incorporates my worst fear in the world and it was as if you just knifed my jugular… I didn’t know how to defend myself. Before I knew it, the first thing that happened was that the voices zeroed in for an attack, snarling, blaming me for everything wrong I’d ever done. Believe me, they remember every detail! And more and worse, they blamed me for everything wrong ANYONE had ever done! Before I knew it, I was Dr Mengele, Heinrich Himmler, and Adolf Hitler rolled into one.

Did you, Alice, know this? Did you intend for this to happen? Did you want this shit to hit the fan and intend for me to feel so terrible? Did you want me to feel in fact God-forsaken? I sensed that you did. I sensed that you wanted me to feel desperate, and desperately alone. I sensed then that you wanted me to HATE myself and perhaps even to KILL myself as a response…After all, you called me a bully! You would only do that if you wanted repercussions to ensue: Bullies make people commit suicide, so wouldn’t the punishment for bullies be to kill themselves in turn? What else can they do to make up for the evil that they have caused? (NOTE: I would never ask anyone else to so punish themselves; only I myself can never be forgiven for the evil I have done. I am unforgivable, nothing I do can ever be forgiven…But you, Alice, who know me so well, knew this, didn’t you?)

You see, Alice, what you unleashed? Do you see?

No, you wouldn’t see. You couldn’t possibly see. You would have no idea, because you don’t know me at all. You don’t know anything about me, not in the way you pretend you do…The person “Pam” you think you know is all in your mind, a fantasy created out of your imagination to suit your own angry needs and purposes.

But the thing is, Alice, you know what? It is not I who am the bully in the end. I understand this now. I may be a lot of things, and I may be Evil, but I am not a bully. You do not know me. You know nothing of me but my writings. Even if lurking incognito on my blog you are actually one of the staff members at Yale or Hartford Hospital, pursuing me, you would still know nothing about me, not really, and would never be qualified to call me a bully. None of my friends have ever called me a bully. No one who has ever met me socially even briefly or just once has ever called me a bully. Why? Because I am nothing even remotely like a bully.

Instead, Alice. you have proved yourself to be an abusive person who lashes out at strangers and who says harmful and hurtful things to vulnerable strangers, regardless of whether you know these things to be true or not. Look in the mirror, Alice. Look yourself square in the face because you are angry and you are bitter, and you, Alice, YOU ARE THE BULLY.

Now, let me tell you something else. You think you can get away with it because you did not use your last name, safely tucked away at several states distance or at least protected by your anonymity.,. That because I don’t know who you are, I can do nothing about it. But ALICE, I have my methods of investigating and I know your last name. I also have two photographs of you — and I will post them and name you publicly right here on my blog if you EVER write anything cruel or abusive like this to or about me or to or about anyone else on my blog again.

I hope I make myself perfectly clear on this.

Now, you know what? I was going to go on to “disprove” the rest of your comment, but suddenly I realized I don’t have anything more to say you. Nothing you wrote holds any value .

I’m tired, and it has been a long devastating night. I am going to bed…We will see what the day brings. Whether it will bring back speech or more devastating voices I do not want to say. I can only hope things improve…If not, at the very least you know where I stand.

Pam

Health, Medication

THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work…

April 30, 2014 Phoebe Sparrow Wagner 14 Comments

FOur Different Atypical Antipsychotic drugs

and they really work for you, then don’t listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the “anti-psychotic” pills you take (or I’ll add in for good measure, god help us all, the “anti-depressant” pills) are doing what we were always told they were supposed to do. Or if you don’t work or care for a family, if not, do you at least live a fulfilling single’s life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who’s to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen…most of them not drug related at all. One simply cannot worry about a “what if” future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don’t need me, and you won’t want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don’t like your drugs and don’t want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do, forewarned is forearmed…This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told. (I likely won’t have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants…You could turn to MAD IN AMERICA by Robert Whitaker for a take on those — just check out his chapter on Prozac for a taste…) It isn’t that AP drugs do nothing at all. They do attack the brain’s neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven’t even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that’s because it is as old as the hills and as tiring. You don’t have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would “work” against schizophrenia. Because the theory was, both in ECT and insulin coma, as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them “better” and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving…at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic (“brain seizing”) drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. “Schizophrenia is an illness just like diabetes.” That was the canard I was told in 1980 — we are still being handed the same disgusting lie! — when I was first officially diagnosed with the condition, or told the name to my face at any rate. “You’ll never recover, and you will likely have relapses, but you won’t be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn’t a death sentence these days but it IS a life sentence…” So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn’t know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn’t read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist…which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart…You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for “schizophrenics.” It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning’s dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses…until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn’t. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system’s poverty and being sick. And once in a while that person’s husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn’t fall into the trap of SSDI after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again…

But alas, that didn’t happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two…

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren’t mind, my sister has control of them! And I can’t sleep, I can’t sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I “needed” in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia…The rest, well, if it isn’t everyone’s history, it is a version of it. And it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good…I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them…

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough, you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don’t respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation…So they did that, and they kept me in seclusion for weeks at a time…until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there….I had a life, yes, but it wasn’t much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn’t know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn’t even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis… I don’t have a bed, only a recliner I should not sleep in…I am a mess, and I am also NOT going to continue to take my Abilify and Geodon much longer…I cannot. I cannot. I do not know what will happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

Poetry

My only Sweetheart, Dead, and a Poem About Her…

April 29, 2014 Phoebe Sparrow Wagner Leave a comment

She died soon thereafter — Eemie on top of her house,…She died soon thereaft

WHOM IS IT REALLY WE KILL? OF WHOM IS IT REALLY WE DREAM?

Is it only two years the little cat’s dead now?

She persists

not in an innocent’s dream

but at my door, so real

I can feel her fur in my tears.

Whoever called the injections

by which we kill our animals “sleep”

had no conscience.

Euphemisms hide facts

but they do not change them, for surely

if my brain believed there was good in her death,

Eemie would not reappear like Banquo’s ghost,

reproaching with her presence

telling me truths I already know:

Even cats can die of loneliness

and she had had enough of being left to fend for herself.

Of course, there was food and water,

but after my father’s death,

she gave up waiting for some density of me

to return, to connect.

Then she gave up wanting me or food.

And when her liver failed

it was too late for anyone’s love to save her.

But what of her last look-around at the stainless world?

How could I think it curiosity,

that sudden raised head,

when it was only a reflex to euthanasia?

How could I not understand such plain table truth?

I asked the vet how long it would take.

“She’s already gone,” the vet said.

Health, Schizophrenia

Daniel Mackler’s Amazing Movie on Recovery From Schizophrenia

Video April 28, 2014 Phoebe Sparrow Wagner Leave a comment

TAKE THESE BROKEN WINGS…

This is an incredible video, which, though long, is well worth watching. For anyone who believes that recovery without medications is impossible or not likely, you should watch this with at least half an open mind. And for anyone who has given up hope, this should give you a lot of hope. I usually cannot watch entire videos half this long, but I watched this one all the way through, even though I admit I had to take breaks because (Yes, I take meds myself) my attention span is short…But it was worth it to learn that one of the women featured not only recovered from her severe schizophrenia without taking psychiatric medication, she remained absolutely psychosis free and became a psychiatric nurse for 30 years. What I would give to speak to her about the sorts of treatment, or abuse that passes for treatment here in CT! But be that as it may, do watch this if you can. It is absolutely astonishing. And beautiful too.

Art, Seclusion and Restraints

Impromptu Starbucks Sketch (Hey TexasTom, If you are brave enough, so can I be…!)

April 28, 2014 Phoebe Sparrow Wagner Leave a comment

15 minutes no longer, and much of it was scrambling to photograph this before I gave it to the person...I heard her friends laughing about "what was that on her back...OH its her hoodie!" but what did I care? I know I can draw, and i only had a few minutes, with all of them squirming around and changing positions...THEy have NO idea how hard it is to draw someone in action! — 15 minutes no longer, and much of it was scrambling to photograph this before I gave it to the person…I heard her friends laughing about “what is that on her back…OH its her hoodie!” but what did I care? I know I can draw, and i only had a few minutes, with all of them squirming around and changing positions…They have NO idea how hard it is to draw someone in action!

The next one is a work in progress, about four point restraints and abject terror, if I can accomplish what I want to do in my usual pencil painting… SO far so good, but we will see.

This will be a picture of four point restraints, or wrist restraints coupled with an expression of abject horror, and more...If I can accomplish it with my usual pencil painting. — This will be a picture of four point restraints, or wrist restraints coupled with an expression of abject horror, and more…If I can accomplish it with my usual pencil painting. Right now, alas, the hands looks a little more like marionette type hands than really shackled though the restraints are drawn exquisitely accurately.

Abuse, Hartford Hospital, Health, Institute Of Living

PSYCHIATRIC ADVANCED DIRECTIVE -2014 – Words to Caregivers (Short and Simple)

April 27, 2014 Phoebe Sparrow Wagner Leave a comment

I am uploading my new PAD, IN ORDER TO AVOID INJURIES SUCH AS THESE, brought on in Jan 2013 at Hartford Hospital’s Institute of Living. and photographed the very day I was released.

Now I have a torn left rotator cuff..anything to do with this, I wonder? from IOL 4 point restraints

Left shoulder,,, caused by brutality or four point restraints at IOL

Bruises from locked leather retraint cuffs on for many hours, immobilizing me — Bruises on bare ankle from long term use of 4-point leather restraint cuffs, locked so tightly i could not move. — from IOL 2013

Although I brought the PAD both to the Institute of Living in Jan 2013 and to Yale in Aug 2013, I don’t know what happened that it was abrogated so deeply and so widely. At Yale, they forced medication on me, holding me down three times daily at times, resulting in such psychic regression that as you have all read, I routinely stripped naked, defecated on the floor and smeared feces all over the wall. That I was at one and the same time attempting to communicate with these people, by WRITING WORDS IN MY SHIT, was utterly disregarded by all at the time. But I assure you that if I was regressed and psychotic in doing such things, I was nevertheless still verbal! I am also virtually certain that had they not grabbed me, pinned me to the floor and held me down for three painful injections in the buttocks of a drug that Soviet dissidents have long called pure torture (Haldol in the 60s/70s was the subject of many a televised congressional hearing, and discussed in just such terms…) my response would have been very very diffferent indeed.

That said, they did what they claimed they had to do, and when I left, I left feeling absolutely convinced that my life was and had been mortally threatened, that I could NEVER return, that I would literally be murdered if ever I dared. Nothing more need be said about such sadistic places as the Institute of Living at Hartford Hospital. Even in the Patient Care Guide and Journal, they are at pains to make it clear that any loud or out of control behavior will be dealt with swiftly and severely, with seclusion, restraints, and even charges pressed by the local authorities! (NO attempts to soothe the traumatized patient or act on what CMS has urged be the best practices of trauma-informed and patient-centered-care at the IOL. No, at Hartford Hospital, it is all about NO SWEARING and staying quiet, non-disruptive. The “Or else” threat behind it all is not even implied but openly stated in their rules and obligations section. Why ANYONE would want to set themselves up for treatment in such a place is beyond me…They have even edited out any attempts at kindness from the old handbook that I was given just a year ago. Yale at least attempted to live up to a policy of Trauma-informed and Patient-centered care. When they said No Restraints policy, I believe they meant it, at least in terms of NO MECHANICAL leather and shackles restraints.

And I believe that had Robert Ostroff MD, NOT been in charge of my care during the week or two that Robert Milstein MD was away, some of the brutality might not have occurred at Yale and I might be writing less devastated things about the Washington Square 2 unit, a place I had once so hopefully described as a “soft, gentle place to land in a psychiatric crisis.” But as much as because of my outrageous and disruptive behavior in response to their trauma as because of their repetitive violence and cruelty, I can never return there…a sad thing I suppose, since there is literally no safe place in Connecticut for me.* *more on this later or in another post. What I have posted here is an update in order to Keep me OUT of the hospital as much as to direct my care if I am put inside, It is not the whole thing, only the first two or three pages, I would be happy to upload the whole thing so you can see how I did it, if anyone indicates interest. Let me know. So far it was always the first three pages that got people’s attention. ______________________________________________________

Pamela Wagner’s

PSYCHIATRIC ADVANCE DIRECTIVE 2014

FOR WHEN I AM HOSPITALIZED OR INFORMATION TO HELP TO AVOID IT

Miss Wagner has experienced multiple episodes of severe psychological and physical trauma, including date rape, the suicide of two friends, and domestic abuse by caregivers. She should NOT be subjected to restraints, involuntary seclusion, or forced medication. The use of these inevitably leads to re-traumatizing and injury, regression and severe worsening of her psychiatric symptoms.

HOW TO INTERVENE IN A CRISIS:

DE-ESCALATION IS ESSENTIAL
DO NOT TOUCH ME OR GRAB ME.
DO NOT LAUGH AT ME.
I WILL CALM DOWN IF YOU REMEMBER THAT:

I AM SCARED AND PARANOID. I ONLY FIGHT IF I FEEL UNDER ATTACK. DO NOT USE A SHOW OF FORCE, AS THIS WILL FRIGHTEN ME MORE.

DON’T ISSUE ULTIMATUMS…That will push us all into a corner and serve nothing

AN UNRUFFLED PERSON SHOULD ASK ME TO TAKE A DEEP BREATH, and try other verbal calming techniques. I am always grateful for people remaining calm when I am upset.

NEVER LEAVE ME ALONE IN A BARREN (seclusion) ROOM.

A WEIGHTED OR WARMED-UP BLANKET SOOTHES ME. SOMETHING ICY TO EAT CAN ALSO HELP.

PLEASE LISTEN TO WHAT I HAVE TO SAY. Medication may not be needed if you hear what the problem is.

IF NECESSARY, YOU MAY PERSUADE ME TO TAKE ORAL MEDICATION, if you negotiate this with dignity and kindness. Keep speaking to me calmly and explain your reasoning.

*I cannot reiterate enough that if you utilize 4-point restraints or seclusion, it is virtually guaranteed that you will see regression, increased hostility and aggressiveness as a result. Please don’t do something everyone will regret.

ADDITIONAL STATEMENT TO CAREGIVERS (PLEASE READ)

It is important that you understand that I do not have a personality disorder (you can confirm this with Dr Angela C——, or any of my longtime outpatient providers and friends and family members). If my behavior/emotions seem out of control, it is because I am out of control – temporarily.

I have had tertiary CNS Lyme disease, which I was informed after multiple positive PCR and Western Blots during treatment was likely incurable. During my initial illness, my brain developed MRI lesions which may predispose me to temporary emotional and behavioral abnormalities but these are NOT my norm. Anyone who knows me well would tell you that, if you ask them.

I am not always able to communicate my fear but because I feel so threatened and unable to communicate clearly about it (lest there be consequences to me) I may become very angry at the hospital situation. I am not an angry person, but I do have trauma issues, as many people do.

Please be aware that I am sometimes mute, in frustration and overwhelmed by circumstances. You can provide me with a pad and pen to facilitate communication, but berating me into speaking will no purpose and may only precipitate anger.

Ascertain from me whether the information you have at hand is correct. Too many records and hospital charts have been drawn up on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating.

I would prefer NOT to take any medications and will resist them. I want to experience my LIFE AND MY FEELINGS. If you insist on meds, the ones that work best are _______.

I will not take any drug that induces weight gain. If you force it, know that I will fight you, tooth and nail.

Art

Gouache of Running Shoes by Pamwagg

Image April 18, 2014 Phoebe Sparrow Wagner Leave a comment

newest painting...whimsical gouache done on the spur of the moment of my running shoes. — newest painting…whimsical gouache done on the spur of the moment of my running shoes.

Art

Chained: New Art

Image March 31, 2014 Phoebe Sparrow Wagner Leave a comment

Chained - colored pencil painting — Chained – colored pencil painting

Health, NaNoWriMo, Writing

NaNoWriMo Installment #5 We Are Hope’s Family: November Novel

November 21, 2013 Phoebe Sparrow Wagner Leave a comment

Continued from yesterday:

Ah, what was Hope always saying? Life is a beach? He hadn’t quite understood her before, but now he did and it surely was. Life is a beach. But it isn’t any pure coral white beach, with sunny skies and clear azure waves. It’s just an old beach of a beach and then you die.

Fuck.

Prem rarely used profanity, so when he thought this word, it appeared in his mind separated out, as if in a paragraph of its own, highlighted, in bold.

Fuck.

What was the point in living if you were only going to die, ignominiously, and end up with your toe tagged in the morgue like any television corpse. It hardly seemed worth it. What was he doing, why did he bother worrying about all these people in Building 22, who were just going to die and end up tagged at the toe themselves? How was it worth it, trying to hold the building together that was trying to fall apart after a hundred years of being mortared and bricked into existence? And how worth it was it anyway, just to upkeep a community of twelve individuals who many of them had rarely-to-never paid a cent into society, but only drew from it like the proverbial parasites that some, like Martin the skinhead, called them.

Martin had hardly a peg-leg to tap out that tune with, however, being something of “parasite” himself, Prem observed. But being copper had never stopped one saucepan from calling another tarnished, not in Prem’s experience. And just why hadn’t the disabled paid into society? Had any of them ever tried to get off disability? Was it their fault? Or was it the fault of a society that encouraged, even forced permanent disabled status on them, and with it concomitant poverty? Who could get out of the disability snare once caught in it? No one who had lived in Building 22 had ever, so far as Prem knew, outgrown or out-earned disability. In fact, the residents were forever finagling ways to earn just up to, but not beyond the strict earning limits placed on them, just so they could maintain disability and their subsidies and their small but stable incomes.

What a miserable trap. You could get a regular but miserably small income for life, if you agreed to be disabled by the system. But in order to get out of the trap, in order to try to earn a living and make your own way, you would in a stroke lose both the place you lived and your regular income, all for a life of insecurity and instability. And this at a time when nothing was secure or stable except the fact that there was no safety net, and no one cared about people in need except a handful of overused charities and churches. So who could blame a disabled person for deciding not to even try to work but to stay on disability and remain impoverished? Who could blame them when that meant at a minimum a roof over their heads and food on the table. It was a devil’s bargain, but Prem could see how sometimes the devil could appear a better partner than the faceless ghoul of potential homelessness and hunger.

“Earth to Prem, earth to Prem,” called Ernie while Beanie smacked her bony hands and made a resounding clap in the tiled lobby, startling Prem from continuing his thoughts. He stared at them, realizing that of course the two women in their own persons made hash of his argument: They had both had had long working lives and deserved more rather than less of what they got out of the system. Nevertheless, it did not completely detract from his argument that two elderly women on social security were trapped in poverty just as the non-working disabled were.

“What were you thinking that took you so far away?” demanded Ernie, never one to keep questions to herself.

“I, I,–“ Prem didn’t know how to respond.

“Aha! You really were thinking something. It must have been juicy!” Together the two ladies crowed.

Suddenly, Prem decided to take the question seriously. “Actually I was thinking about something. It wasn’t juicy, not the way you think, but it was – I don’t know how to put it. Can I ask you a question?”

“Sure.” The two spoke at one time.

“Okay, then. Tell me when you disagree with me. First of all, this is a society of “haves” and “have-nots,” right? I mean, we have huge inequality, you can see it right here — this building, Number 22, compared to others down the street is just one example.” Prem stopped as if one of the women had spoken. But he saw at once that they were simply waiting for him to go on so he continued, “Clearly it’s no good simply to give a “have-not” everything he or she needs. That’s just what we do now, and in my opinion it leads nowhere but to misery and protracted disability.”

“What if the “have-not” isn’t disabled, but just old? What if the “have-not” works full-time but isn’t paid enough to live on? There are a lot of other ways to be a “have-not” than to be disabled.” These objections came from Beatrice Bean, whose fingers held an imaginary cigarette. She pretended to suck on it, then flick the ashes.

“You’re right. I guess I am a little obsessed with the disability issue. But let me go with just that part of it. If the “haves” somehow could help the disabled “have-nots” gain a set of skills – any set of skills — to become “haves” like themselves, wouldn’t that be better? There are plenty of skills that can be marketed. You don’t need to go to a regular workplace these days to earn a living.”

“I really hate that word, ‘marketed’,” Ernie interjected. “Why does everything have to be for sale? Why must everything be reduced to a matter of money?”

“Because it’s a capitalistic world, that’s why. You and I may not agree with it but we’re stuck with it, and until we can live in a world without money, the have-nots need to learn how to earn.” For all the conviction in his voice, Prem was not that comfortable defending capitalism, especially knowing how avarice had despoiled the natural world he loved so much. But he knew that capitalism had ruled for centuries, and that it wasn’t going to change in his lifetime or the lives of these two women, so it was to all intents and purposes, a fact of life.

“So you are going to teach all the disabled people in Building 22 how to get a paying job? Good luck!” said Beanie with a wry smile. “I don’t personally think anyone here is going to thank you very kindly for it.”

“But don’t you see? That’s precisely what I mean.”

“What do you mean? Why should anyone thank you? If you have an apartment, a social worker, food stamps…you have it made in the shade. Why should you want to work?”

“Because people would feel better about themselves if they could work, that’s why…” Prem said, lamely. He then realized that he had made the mistake of so many do-gooder liberals, believing he knew what was good for those he wanted to help better than they did themselves. But how could he know how they felt without asking them? How could he know whether they felt bad about themselves now or would feel better about themselves working? He hadn’t spoken to most of the residents about the matter. In fact, it had only been Hope, the second floor resident and artist, with whom he had spoken in any depth. It was she who had been so passionately outspoken about feeling trapped in “the System.”

Even as he thought about it Prem realized that things were complicated. Yes, Hope was an artist, and he felt she should be able to sell her work and keep the income at the same time, but wasn’t she also often ill and unstable? It seemed to him that she was hospitalized for weeks at a time, and as frequently as twice a year. What would she do without disability payments when she was ill, he wondered, and how would she survive or cope even as an artist during the inevitable lean times if her disability payments were cut off? Yet she was the tenant who resisted staying on disability, even as it was clear to him that she could not afford to chance getting off it, not unless she could sell paintings regularly or for large sums of money, something that was not likely to happen. People like Hope weren’t discovered by museums or fêted by the rich and famous to be made rich and famous. No, they simply did art and made art alone, steadily, keeping the faith that it was worth it simply because art to them was like food for the rest of us.

Hope wasn’t going to quit painting or making her sculptures just because no one “discovered” her. Hope did art because she had to do art or die. Period. If it sold, well then, good. But so far as Prem knew, Hope had never tried to advertise or sell in the manifold ways that “working artists” sold their art: by marketing themselves and their art in such a way that people come looking to buy. It wasn’t that she would not sell. Prem thought she might be very happy if someone wanted to buy a piece of her artwork. It was simply that she had other things on her mind than making art in order to suit the purchasing public. And what about the others in Building 22 – were they so very different? What did he know? Did he know enough to draw any conclusions at all?

“It’s just such a vicious cycle,” he said, as if finishing a thought he had started aloud.

Beanie seemed to have followed him. “Yah, I agree. But some of these folks have two or three strikes against them before they started out in life. Can you blame them for seeing a tiny fixed income for life better than the insecurity of not knowing whether you can earn anything at all?”

Ernestine Baker seemed to disagree. She counted off on her fingers, as if reciting a litany, “Darryl, Kashina, Bryony, Giorgio, Feder…and that strange woman, Hope. What cases. I wouldn’t want to be in their shoes for a second. I can’t imagine being one of them for a day, not even if you paid me. Talk about unfulfilled lives and unrealized potential!”

“But what are you saying?” remonstrated Prem. “That their lives are wasted? And if they are wasted, whose fault is that? Why have the disabled been allowed not to do something with their lives? That’s my entire point. Look at Giorgio. He was a talented auto mechanic. He wasn’t in the system all his life. He has skills. He just can’t use those skills right now. Feder has savant expertise that surely could be used somewhere productively. Bryony already works three days a week, and Kashinda is so young that it would indeed be a terrible waste if she never learned to do something with her life, except smoke pot. We created a real monster with Federal disability benefits: the same limitations that promote permanent poverty promote never getting better.” Prem could feel himself getting passionate, and wondered just where that came from. Why did he care so much? Why he sounded almost hysterical…

“Okay, what’s going on, Prem?” asked Beanie, peering at him with more than a little concern. “Why don’t you draw up a chair, sit down with us, take a load off…”

Baker, abashed, chimed in, “You want a drink, Prem? The beer is on me.”

His face warm, Prem had felt a sudden but urgent need to be gone. To be anywhere but here. Ashamed of himself, he apologized to the two older women and literally backed away even he spoke, forgetting entirely why he had returned to Building 22 at such an hour in the first place. By the time he remembered the water pressure situation that had occurred just that morning, he was halfway down the block with an old cassette tape playing Dave Mallett’s “Pennsylvania Sunrise,” a song that always made him yearn to hop a train and go places, never to return.

Pennsylvania sunrise…ten degrees at best.

Peerin’ from the window of a club car heading west.

After mornin’ glory…money for the miles.

Someone said I’ll do this for a while.

_____________

I promise more action in the segments I will share in upcoming days. I won’t share the entire novel but I will share some parts of it, enough to entice. I now have c 120 pp. double spaced 37000wds.

NaNoWriMo, Writing

NaNoWriMo – Additional Installment #4 November Novel

November 19, 2013 Phoebe Sparrow Wagner Leave a comment

A piece from the middle of WE ARE HOPE’S FAMILY

In 2011, late October, Prem at 45, walked the hallways of his building, still only the manager, still earning a monthly salary from his father with whom he rarely spoke, and then only to discuss matters concerning the building’s upkeep. He could not afford to go on vacation, or to buy a new car. He had never bought a new car in fact, but kept his used Honda on the road well past the time when others of his former socioeconomic bracket — that is, the friends he had grown up with — were trading in and up. He never thought in those terms, socioeconomic brackets meant nothing to him. He was just Prem Mukherjee, and he had more in common with the people he worked with, and for, than those who bought new cars every other year and cared about that sort of thing. But in point of fact, he had very little money to put in the bank or to support a family, had he had one. But Prem never married, never even found a woman he could fall in love with. Somehow none ever measured up to whatever standards his mind seemed to set, if he set any. He wasn’t sure he set standards, only that he was so busy and he just never socialized, never seemed to be looking for a partner and no one appeared before him to dazzle him. Perhaps he was meant to be alone. He never minded much, but the prospect of growing old alone, when he couldn’t work and might be ill didn’t feel right to him either. Nevertheless, whom could he meet and fall in love with and how was that ever going to happen?

If he thought about it, there had been a few women who had appealed to him over the years, but they had always been so unattainable for one reason or another that he had scarcely tried. Thinking them either too-career oriented or too wealthy to look at a (poor as a church mouse) Building Manager like Prem, he shied away from making his interest in them known. What would he do with a rich woman, anyway? He could not keep her happy, not if it meant dinners out at restaurants or the theatre or other expensive entertainments. His own idea of entertainment was a walk in the park or dinner by the fire in his apartment and reading a book aloud to one another, or just talking about each other for hours…

Yes, it was possible there was someone who would like things like that, but he hadn’t met her yet. On the other hand, he hadn’t met many women at all, so how could he know whether or not there was someone out there for him. Ever since the rupture with his father years before, he had thrown himself into the work of Building 22, and all the complexities inherent in dealing with Eleven disabled or elderly individuals. He had learned much along the way about Social Security and federally subsidized rent, not to mention the troubles and headaches of maintaining a 100-year-old structure in a world where most such buildings were torn down and replaced with new ones. How could he have found the time to meet someone, the right Miss Someone, when he had had so much to do that was so vitally important to twelve lives all that time?

Eleven lives? Well, it was more than eleven, in fact, in all those years, since people had come and gone in the 24 years since he had taken on the responsibility for the building and its upkeep. There had been deaths, and there had been moves too. And the weird thing was that for the most part the moves-out had been almost as sad as the deaths. Building 22 was a little community, and while people might keep to themselves, for some were loners by nature, nevertheless the tenants knew one another at least by name and no one to his knowledge was ever ostracized or openly disliked, except once, not so very long ago. That tenant, Martin, was an irascible young man, with discernable emotional instability, a self-described “skin-head.”

The police were summoned on several occasions. Once it was to break up what had threatened to become a fist-fight between on the one hand Martin, spindly, shaved-head twenty-something with a pigeon breast and arms that were too long for his body, and Darryl Strakesley, the Building 22 resident who was, of all the residents, the most fully employed – he worked 30 hours as an usher at the Cinema Deluxe – and the least independent at one and the same time. Darryl, who had Down syndrome, was squat as a fire hydrant and nearly as immoveable. He was also almost always unflappable and this was a good thing, given his congenital heart condition, so when Prem heard that summer that Darryl had been begging Martin, the skinhead, for a fight, he knew something was wrong. Something had to give or worse would happen.

Prem wasn‘t there the day of the Darryl-Martin Brawl, as it came to be called. That day, city hydrants had been shut off in certain locations, lest children using them for sprinklers waste too much water when the region was in the grip of a simultaneous drought and heat wave. Building 22’s water pressure suddenly failed and none of the upper floors had running water. This would have been a disaster in the making at any time of year, but during the summer, in a heat wave, nothing could have been worse. So Prem spent all afternoon fighting with the water company and the electric utilities in order to get their plumbing functioning again. It was only when he returned to Building 22 early that evening, to check on residents and make sure that the water pressure situation had been resolved, that he learned what had happened.

“Darryl took a swing at Martin,” old Beatrice Bean peremptorily informed Prem the moment he stepped into the lobby. Beanie, dressed in a lightweight housecoat, was seated in an inexpensive folding camp chair, the kind with a pocket for soft drinks, near the elevator. She did not get up when he came towards her as her gnarled feet were blue-veiny and swollen from the heat, but she did reach out to shake his hand. “It wasn’t Darryl’s fault. How could it be? Darryl wouldn’t hurt a cockroach. Martin does these things to people. He makes you want to clock him.”

Beanie wasn’t alone. Seated with her, in a similar camp chair holding a cold beer, was her friend Ernestine Baker, who had been Beanie’s best friend for as long as Prem had known them. Superficially, they looked like sisters, both being tall and having masses of extraordinary white hair that would have made them stand out anywhere. But of course there were differences too, and it only took a second glance to see that Ernestine was both thicker and a little younger. Ernie’s voice was also higher and sharper than Beanie’s, who had once been a smoker and even now occasionally enjoyed a butt or two when she was offered one.

At 75, Ernie was not, for all that, the healthier of the two. Prem knew that she had had diabetes most of her life, and now suffered from complications that would set most people back but which Ernie took in stride, largely he thought from having anticipated them as possible if not absolute likelihoods in her future. Ernie lived on the first floor, apartment C. (Beanie, on the other hand, lived next door to Hope on the second floor in A). When she stepped on a thumbtack, and her toe became infected, for a while it seemed that nothing could go right. She lost the toe and then her entire left foot and was in rehab for three months before they released her, wheelchair-bound. But being Ernie, she refused to stay seated, and was up on crutches and mobile before the end of the year.

“Halloo, Premjit Mukherjee,” hailed Ernestine, half-rising, to air-kiss the manager. “You missed a ringside seat a few hours ago.”

“I hope no one was hurt,” said Prem, his brow once so smooth now deeply furrowed as if with permanent worry. “With his heart condition, Darryl should not be fighting anyone. You all know that. And with Martin of all people.” He remonstrated gently, but the look on his face was nevertheless puzzled and full of sorrow.

“Oh, Prem, never you mind,” answered Beanie. “No one would let Darryl fight Martin. At least we wouldn’t let him if we could stop him. But the operative word here is could.”

“What do you mean?”

“Well, for one thing, Darryl is a grown man, and while we try to keep an eye on him for Morelline, we can’t watch him every minute of the day. Besides, he never needed that before. It’s just this Martin person. He’s a nasty, spiteful snake if ever I saw one.”

“Martin’s a problem, I grant you that,” Prem said to Beanie. “But he has a disability, and you have to learn to live with him, or at least get out of his way so he doesn’t bother you. He has a right to live here just like everyone else.”

At this, Baker and Beanie glanced pointedly at each other with raised eyebrows. Then they turned back to Prem and exaggerated their attention. Sensing their intent, he lowered his chin into his chest, looking at them from under a knitted brow. “Wait a minute. That’s not fair. I know he’s not been very nice. He’s—he’s –“

“Premjit, Martin boasts openly that he’s a skinhead,” said Beanie. “He hates anybody who isn’t white and whatever else neo-Nazis are supposed to be. I know a lot of haters want you to be ultra-Christian, but in this case I think Martin hates even Christians …” Beanie sounded weary, as if tired of trying to explain Building 22’s animosity towards Martin, as if tired of explaining why skinhead philosophy was actually not as decent and reasonable a way of thinking as any other.

Prem made a wry face and nodded. Shrugged. Then seemed to apologize for shrugging. “I’m sorry. I know. I know. I don’t like Martin’s talk anymore than you do, really, Beans. But it isn’t right for me to take sides against a legal tenant. You know how I feel; you know me. Do you think I would approve of the things he says, the things he does? But…”

“But what?” asked Beanie. “But let Martin badger Darryl into fighting, and then stop Darryl from fighting, both at the same time. Just keep the peace so you don’t have any headaches? Is that it?”

Prem looked at the old lady with her swollen feet thrust into rubber flipflops of the cheapest kind. He could all but see the lightning flash from her eyes. He smiled. “Yeah, that’s about it. I don’t like headaches, you know. I like a nice cushy job, no troubles, no probs. Don’t get involved in anyone’s life, just do your job, collect your pay check and go home, watch Geraldo on TV…” He struck a pose as if opening a beer and letting it slosh down his throat. “Ah, good!” He made a gargling noise.

Beanie visibly relaxed. “Okay, okay, ” she said. “You get it. I should have known better.”

“So tell me what happened here today, Beans, Baker. Martin got Darryl riled, that much I gather. And I can see how that would happen, what with his racist talk and manipulating.” Baker cracked open another cold one from her cooler, distracting him. After a long sweltering day, Prem was tired and thirsty. He wished she would offer him one, but of course no one would think of offering the building manager anything like alcohol, not even an icy cold beer on a hot day. Resigned, he finished his sentence. “But how did it go so far, and how on earth did it end peaceably?” Ernie Baker snorted. “Peaceably, my foot. Oh, excuse me — I don’t have a foot. Well, my ankle, then. The police had to practically pull them apart. It was only because Darryl weighs so much more than Martin, and is so much bigger that Martin didn’t get away with saying the things that he said. I think he expected he could blab whatever filth he wanted to just because Darryl has Down syndrome and it wouldn’t matter. Did he think Darryl was also deaf? Next time he’ll think again.”

“What happened after the police stopped Darryl from hitting Martin?”

“Well, they were going to take him downtown, especially when that little shit wanted to press charges. But Morelline, Darryl’s mother, you know. Well, you know how she is, she persuaded Martin that she just ‘might-could’ look into a few things he was involved in, and she would, you know, if he went ahead.” Beanie stopped to glance at her friend Baker, who took a swig of beer and shook her head.

“Morelline once worked in government. She knows how to get information and Martin knows it,” Ernestine added.

Beanie continued, “Anyhow, by the time she was through the police were able to leave without taking Darryl, and that skunk Marti slank off somewhere with his tail dragging. It was a sight to see. I tell you, the rest of us tenants had a party on the rooftop afterwards. All that was missing were the fourth of July fireworks, which was just as well since I didn’t think we needed any more explosions for rest of the day!”

As Beanie finished her sentence, the elevator down the hallway thumped into service. There was a hum and a light went on signaling that someone on Floor 3 had summoned the car. With a rapid whoosh it descended and when the door opened, a short squat man with a solemn face and the characteristic features of Down syndrome exited the elevator, Darryl Strakesley. His mother, a tiny dark-skinned woman wearing a yellow dress followed him, her black hair neatly cropped against her head, gold hoop earrings completing the ensemble. Morelline Strakesley at 55 always looked exquisitely well put-together, and few suspected that she bought everything she wore at Goodwill or thrift stores, her carefree days on a government salary having been many years before.

“Darryl. Mrs Strakesley. How are you?” Prem greeted them, the only two residents who shared a unit in the building. It must have been tight quarters for a single man and his mother to live together in one apartment, but they managed without discernable trouble. Each time he had seen their premises the place was neat and clean without being inordinately immaculate. The nice thing was that there was always a place for Darryl’s projects – he had learned in school to make potholders and to weave simple placemats, of which he made sets and sold them on the side. His small looms were set up in the living room, even though that was where his mother Morelline slept each night on a pull-out sofa bed. Morelline, who had once, so it was rumored, worked for government intelligence – whatever that meant to whomever it was told –was now too ill to do more than care for Darryl and spend her spare time reading and keeping up with the news, which fascinated her. She had few people with whom she could converse about such things, but she read voraciously and widely, and she was on a never ending quest to find a cure for Darryl’s heart disease before it was too late.

As for her own problem, although it was clear she could no longer work, she would not see a doctor, convinced that it had been doctors who had caused Darryl’s Down syndrome. So while she wheezed and had trouble catching her breath, could scarcely walk sometimes due to swollen ankles and legs, she would only use her relatives’ extra inhalers for her asthma or ones they didn’t need. Or that other people gave her from their own supplies. Somehow she managed to get them when she felt she needed them. And somehow she kept on going, though the wheezing was never much relieved, it felt just a little better, and she felt better because she wasn’t paying doctors just to make her worse. Unfortunately, moving at all was often the triumph of matter over mind for Morelline, when Morelline’s body was the matter at hand, refusing to knuckle under and give in to her demands. It was clear that she detested asking for help at any time, but she especially hated it when she herself was in need, unable to breathe and wheezing like a broken bellows.

This evening, however, she must have been better, because she smiled and said that they were going out. Darryl didn’t have to work and it was unpleasantly warm indoors and so nice outside that she and her son were taking a stroll in the park, where crowds and summer lights kept it safe late into the night. Surprisingly, she said nothing about the incident earlier in the day. Even Darryl seemed no worse for the wear, sporting a coat and tie and a pair of old fashioned seersucker trousers. Together they looked like an adorable mother- son pair, going out on the town together on an ordinary summer night. No one could have known that the son had nearly been arrested that afternoon for assault, or that the mother had once worked, so it was rumored, for the CIA, and thought nothing of using the fact of her past employment to threaten someone, albeit someone menacing her son, into silence.

Prem and the others watched as Mrs Strakesley led Darryl through the double doors of Building 22’s lobby into the darkness of the street outside. On the one hand, he didn’t know whether to be proud of the woman or afraid of her. On the other hand, he knew she was fiercely and defiantly protective of her son, and that she would die before letting anything bad happen to him. Darryl may have been unfortunate in certain circumstances of his birth, but he was also blessed with a mother who was determined to make a life for him as best she possibly could, given all that she had to handle. Whether or not this was good for him, Prem thought, it was impossible to say. But no one could deny the single- minded force with which she forged ahead toward her goal. Prem worried though. He worried about Darryl if anything should happen to Morelline, and he worried about Morelline because she seemed sicker than even she was aware. He didn’t know a great deal about asthma, about COPD, one of the seemingly popular and common diagnoses of the modern age, but he clearly remembered from his pre-med days the symptoms of chronic congestive heart failure: shortness of breath, easy fatigue, edema. Not to mention potential kidney failure that could add to the catastrophic nature of the illness. He was careful, however, even privately, to remind himself he was not a doctor and that Mrs Strakesley stringently avoided seeing doctors, so that even if he was right, and even if she knew what was wrong, she would likely refuse treatment.

(TBC)

Happiness, Health, Life

30 Things to Stop Doing to Yourself

November 18, 2013 Phoebe Sparrow Wagner Leave a comment

30 Things to Stop Doing to Yourself. From Bucket list Publications by Marcandangnel…words to live by. I loved these and while i rarely reblog someone else’s page or simply link to them. These 30 sugggestions were so simple and cogent i simply had to. Way to go marc and angel!

more later but for now i am on the train home from north carolina ans trying to write more on my. november novel. TTFN. Love you all!

pam

Health, Mental Health

Sometimes it Takes a Village …to avoid the Hospital

November 17, 2013 Phoebe Sparrow Wagner 1 Comment

Sometimes it takes a village...of caregivers — Sometimes it takes a village…of caregivers

I swore that after I left Hartford Hospital’s Institute of Living last January, 2013, having spent the better part of a month in seclusion and many many hours brutally and punitively four-point restrained, I swore I would never go anywhere that would treat me like such an animal again. But then, having twice been treated at Yale New Haven Psychiatric Hospital once in early 2013 and finally later on that same year, discharged with piriformis syndrome from having been forcibly held down and injected in the buttocks over and over with 3 different drugs, Haldol, Ativan and Benadryl, I said that I would NEVER again permit such torture in the name of treatment anywhere, no matter what they called it. No not even at Yale.

Given the massive traumas I have experienced these past five to ten years in Connecticut mental hospitals, abusive practices that have only increased since my first hospital stays in the 70s, I decided last August, post Yale: never again. Never again would I go to ANY hospital whatsoever.

To that end, my family, my family of origin, since I never married and have no money of my own, has taken it upon themselves to hire for me (or let me arrange for myself the hiring of) several personal staff members to “come on board” for me in my apartment 24/7 starting in late December and if necessary work through January, if there is a crisis. I haven’t gotten through any January without a hospital stay in several years, so it is a good thing to be prepared, on the one hand. But the very fact that I need not fear the hospital now might also mean I can avert the worst of any crisis! Who can tell? All I know is that we are all talking about how to help me primarily stay safe from what the voices command me to do, and how to do so without panicking or calling 911.

One thing I insisted upon was NOT using any agency, because while they serve a function, I suppose, they also pay their workers shit. And someone who is paid $8 an hour is not going to want to do the same quality of job for me, while sitting with me in my tiny apartment as someone who is getting the entire $20/hour, if you get my drift. And why would they? I need people who are committed to keeping me safe from myself at the height of any craziness that might assert itself, and if the voices command me to grab a pencil and suddenly stab myself with it, as they frequently have, I NEED to know that the person I have hired will be right there with me, ready to grab it from me, not in the other room reading a book, or cooking, or yammering on the phone to a friend. For $20/hour I think it might not be too much to ask. At $8/hour it might be.

For $20 an hour, a person can stay awake all night and not need to work another job immediately upon going home, so I will know that if I wake up in my recliner and hear command hallucinations to set myself on fire, she or he will be right there to stop me. Because that is how it happens, has in fact happened just like that.

It is the only way to do it. Unless $20 somehow is not enough to cut it, pay wise, (and I cannot afford to pay more, over all) (the people I hired are also already not working other jobs either…) I think it is not a bad wage, is it? Honestly now, tell me. I am not asking for much else but for someone to sit with me, talk with me IF i feel like it, and watch me to make sure I stay safe. The worst thing would be boredom I imagine. But I don’t usually bore people even when ill. THat is not often their problem. The problems are other things, for me at any rate, and those are that the people that sit with me in hospitals have NOT done their jobs properly at all, and have ignored all the warning signs, even my open pleas to please please “do your jobs. I am on “one to one” for a reason!

No, in the hospital, the aides just turn their backs and stand in the doorway, facing outward, away from the room i am in, and gab with the other aides, completely ignoring the person they are supposed to keep their eyes on at all times. It is crazy. I remember a woman named Jennifer deliberately turned her back to me no matter where I stood in the room, and if I went in to the bathroom, she left the outer room entirely…which was such a rule breaker. She knew what was happening, I think she was playing a game to see if I was truly dangerous to myself or not…Or really just didn’t give a damn.

Is it any wonder that at one point at one hospital, I asked to get off that status. It was simple: I just told them I was safe and they were so glad to reduce their workload they stopped the one-to- one immediately. The next thing I knew the voices had me begging to use my makeup compact. the one with a small glass mirror in it.

“Sure, you can. Just make sure you bring it back to the nurses station in five minutes,” said the Nurses Secretary, handing me the little black plastic thing.

Well it took all of three seconds for me to stamp on it with a hard soled shoe, break the mirror and slice up my left wrist bad…

Of course, they punished me for that. Or they would have, I know. But I remember, I wrapped a huge wad of paper towels around all the blood and told no one for hours, so when I realized that I needed stitches and had to admit to what I had done, it was too late for them to respond with the punishment of 4-point restraints…

The point is, the aides weren’t evil. Not all of them, or at least their lackadaisical attitude was borne out of a lack of caring which itself was spawned by being paid little to nothing. Why should they care? It was just a job to most of them, and little better paid that flipping burgers at a restaurant. Worse than that, because they had no perks and no tips.

So when I hire someone to sit with me, talk with me, keep me safe both from myself and hospital abuse, I pay them $20 per hour (and even $30 per hour over time during snow storms etc), I expect them to be responsive and not lackadaisical. I do not think that is too much to ask or demand. My life and health and bodily integrity depend on it.

NaNoWriMo, Writing

NaNoWriMo – 3rd Installment, November Novel: We Are Hope’s Family

November 17, 2013 Phoebe Sparrow Wagner 2 Comments

Feder spoke into the darkness of Hope Ouestelle’s apartment. No one answered. “Hope?” Again there was no answer. He peered through the dimness of black and gray shapes that he hoped were just her papier mache people and creatures. “HOPE! Where are you? “ He stepped inside and moved forward, fumbling blindly for something to guide his way. Just then, his hand fell upon a lamp and he was about to pull the cord, when Hope yelled out from the bathroom.

“Don’t try to turn on the lights! I am doing something here and any light will ruin it! Just wait a goldarned minute, okay?”

Happy to hear her voice, Feder felt for a chair, slid into it and rested. At least Hope had lights, which meant that she had not lost her utilities the way some of the buildings tenants had, not yet at any rate. Not the way he had. Feder was ashamed of himself and was half afraid to admit it to Hope that he had spent too much money this month. On important things, yes, but also things that experience told him most people would not understand, like repeatedly paying to go through the turnstile at the Parkland, just to feel the rolling thump of the bars against his body. Why did he like this and why did he do this? He didn’t know what it was about that admission turnstile but there was a moment, right inside it, when the bars felt like they locked and might not release him, and he felt such anxiety it was almost pleasure, and then they did, they let go and that was so — what? It was so mysterious a pleasure that he had to do it again. Yes, he knew that there had been a rate increase in the electricity bill this month, that he had to pay $30 more, but somehow entering the turnstile had used up that $30 and he hadn’t been able to pay his bill and now his apartment had neither lights nor heat.

What was Hope going to say when he told her? He wasn’t going to ask her for money. She wouldn’t have any extra in any event. He just hoped that she would let him eat with her in the evenings, and cook his supper in her apartment with her the way she had the last time this happened. She might even, maybe, perhaps, let him sleep in a chair in her artroom/living room if it got really cold in his apartment. That’s what she had done the last time and he could only hope she would do it again.

But he remembered what she had said to him the last time he slept there the previous spring, before he left for his apartment, after the weather turned warm again and daylight savings time returned. ”Feder, I cannot keep rescuing you from yourself. What am I doing? Am I helping you or hurting you by letting you stay here? I honestly do not know.”

Feder hadn’t known what to answer. How could she hurt him by letting him cook his food in a lighted kitchen or sleep where it was warm? How could it hurt him to help him? But Hope had her own ways of thinking and he had to keep that in mind. She did not understand the draw of the turnstile, and he knew she would think it strange to the point of bizarre. Everyone did. Everything he did looked strange to people. He was bad. Bizarre was bad, bizarre could get you taken away. But Hope should understand that. She was regularly taken away herself for what others thought was bizarre behavior: sitting in her artroom, talking to herself or to her papier mache people, or listening to voices of people no one else could hear, and doing what they told her to do, harmful things to herself, things like putting out cigarettes on her skin or cutting off pieces of herself with the sharpest of scissors. Talk about bizarre.

Feder at least had never been taken away. Not since he was a kid. But he would not think about those days. To think about those terrible days in the screaming room was to invite trouble, the many hours tied down to a bed because he wouldn’t – couldn’t – stop spinning. The times the teacher pinched his arm to stop him from reciting names after names of things she did not have the same need to know and hear…His need to tell her the dates of everything that ever happened to him and her need not to hear him, to silence him. How she had so much power to do so. No! Mustn’t think about those bad times, black times, screaming times…Mustn’t think. Mustn’t think. He had to think about something else. Think about the turnstile, the turnstile. How the heavy rollers came across to stop a person from crossing, then how they caught him and held him ever so briefly—that strange mechanism he was never sure he saw properly – and then how they always gently released him safely to the other side. He would think about the turnstile if he had to, until Hope came out of the bathroom.

But then thinking about the turnstile reminded him of the fact that he had not paid, could not pay, his electricity bill and how there was neither heat nor lights in his apartment. He did not want to admit this to Hope…The need to recite took hold, as it always did when anxiety got the best of him and he seized the information that was closest at hand: His name was Feder Prisma and he was 31, born Jan 5, 1979, a Friday. Hope Outestelle, his best friend was age 57, born Sept 16, 1954, which was a Thursday, the 259^th day of the year. Premjit Mukherjee, was their friend, and the building manager, aged 47, born on April 1, 1964, a Wednesday, the 92^nd day of the year. Stashu Weissman, was from Poland, aged 79, b orn in 1931, Dec 25, a Friday 359^th day of the year. Giorgio Ciabatta, the auto mechanic, at age 43 born, in Italy, Feb 19, 1968 on a Monday. Beatrice Bean age 84, was born on Sunday May 1, 1927, the 121^st day of the year. Their Landlord Mr. Mukherjee, was age 71. He was born on Sunday, April 27, 1941, the 117^th day of the year. On the fourth floor, Bryony Leurile aged 44 was born on the 82^nd day of the year, Sunday, 1967, March 23^rd. Then there was Kashinda Whitmore, age 27, who was born on the 305^th day of the year, in 1984, on Halloween, a Wednesday. Darryl Strakesley aged 31 was born on a Saturday, the 255^th day of the year 1981, Sept 12^th. Lupita Villareal, aged 62 was born on Sunday, the156^th day of 1949, June 5. There were others, but he did not know their birthdays yet, so he started repeating the dates to himself. Hope Oestelle, his best friend, was born on Sept 16, 1954, she was 57 now. It was on a Thursday–

“So, what do you think of this?” asked Hope, appearing suddenly in the equally sudden explosion of lights that came on all together when she flipped the apartment’s main circuit breaker.

Feder started.

He hated it when people wanted him to notice something. It was always a test he failed at. He guessed. “Your hair?”

Now that he said it, he looked to see if it was true that her hair was different. She had cut her hair as short as a man’s, yes. Not only that but it seemed that she had dyed it as well, a persimmon red.

“No, not my hair. That was just an experiment. Look.” She held out her hands, dangling papers for him to look at more closely.

It looked that she had been developing photographs, but these were very strange ones. So dark as to be nearly black, with purple streaks and outlines of leaves and circles.

“Kirlian photographs.”

“Yes! You know! Well, sort of. I am doing electro-photography, and developing the Polaroids myself. I wanted to see if I could make this camera out of things I bought at GoodWill, and it turns out I could, mostly. But Feder, I’m really disappointed. The photos are awful. I was expecting something different. These are ugly. I think auras should be beautiful…” She retracted the photos instead of handing them to Feder, and tossed them aside with a shrug. “You win some, you lose some. At least I didn’t spring for a real Kirlian camera. Those cost $500. I only wasted maybe fifty bucks, making mine. At least I can say that I built a working aura photography device, for all the good it did me.”

Just at that moment, Feder’s stomach took the opportunity to announce its hunger with a rumble. Hope heard. She looked at her watch with a frown.

“Haven’t you eaten, Feder? Do you want to have supper with me? I’m sure we can scrounge up something.”

Feder made a rueful face but nodded. “Yeah, I’m pretty hungry. Maybe you have some cereal I could put milk on? Captain Crunch?”

“Nah, I never eat cereal, Fayd, you know that. I could make you some oatmeal, but you hate my oatmeal. How about a peanut butter and banana sandwich and diet ginger-ale? I have some really good bread and about three bananas.”

Feder’s eyes lit up at the mention of his favorite sandwiches and he smiled for the first time that evening.

“Good. I’ll make the sandwiches if you peel the bananas and pour ginger-ale into glasses for us. Okay?”

Feder followed Hope’s carroty buzz-cut into the tiny kitchen and between the two of them they made short work of preparing their meal, then carried their plates out to where Hope’s art work occupied most of the living room. Hope pushed aside the Kirlian photographs and made room for Feder on the sofa, then flipped on the 12” television propped on a stool on a milk crate in front of them. Eating intently, they hunched forward as the PBS show Nova’s logo blazed across the little screen.

“Oh, good, I was afraid we’d missed it, but we’re just in time,” Hope murmured between bites of sandwich. Feder never spoke while a television played; even when the programming failed to absorb his interest, the interchange of light and shadow on the screen never did. Television had calmed him from an early age, and his mother always placed his crib in front of a late night movie when he couldn’t sleep. Knowing she couldn’t talk with him now, Hope turned her attention to the program, hoping it would be about something interesting, something that would give her ideas for art.

People sometimes thought it strange that Hope, who was passionately an artist when she wasn’t ill, but who found it difficult to read or even concentrate listening to books on tape, nevertheless devoured television shows and documentaries on science. From natural history to physics, from geology to chaos theory and beyond, everything scientific intrigued and fascinated her, and she used what she learned in her art, in a multiplicity of ways. “What else is art for if not to express what science teaches?” She had said this to Prem one day when he asked her why she used cell motifs when painting her sculptures. “It makes no sense to separate them. If art does not serve science, what good does it do? Art can’t serve art. That would be silly, like a translator translating from one language into the same language. A waste of time. No, maybe art has other purposes too, but one of them I am certain is to interpret science, to express it for those who do not understand it any other way.”

When she had finished she looked up at Prem, as if surprised by her own words.. Not by the thought, but by the passion with which she had shared them, and the fact that she had spoken at length about such things to anyone, and even more so, to Prem, the landlord’s son. She remembered she had backed away, eyeing him warily. What did he care why she made art or what it meant to her? He wouldn’t give a damn. Why didn’t she just learn to keep her mouth shut and leave people alone? Now she would pay, that much she knew. He’d soon be spreading gossip about the know-it-all in Building 22, second floor apartment B, the one who makes the crappy art and couldn’t even read a book to save her life. It was true, her art was crap, pure crapola, and she knew it. If she was any good, well, she would be better at selling it, now wouldn’t she? And it was painfully true that she didn’t read, hadn’t read a book in years, simply could not. If she so much as opened a book she fell asleep. The rare times she didn’t, the words – indeed the letters themselves—soon swam and danced before her eyes impenetrably confusing, impossible to put them together in any sensible way and make them into single words, let alone string into sentences and paragraphs that made sense. She wanted to read books, but the books escaped her. The refused her eyes. They fled from her, as if defying her and mocking her. Nyah, nyah, they scolded. Eat your heart out, but you can’t have us! It was such a struggle, and Hope could do nothing, say nothing. She could not even complain or feel sorry for herself. Why? Why? Because…because…She didn’t know why. It was all her fault, all her fault. Everything was her fault and deserved punishment. No wonder the voices had for years told her to burn herself with cigarettes and intermittently wanted her to set herself on fire or cut off pieces of herself. No wonder. She was the scum of the scummiest. She was the scum of the earth. She was the devil incarnate. Hope pounded her fist on the arm of the sofa, forgetting that Feder was sprawled next to her. Luckily, he had fallen nearly asleep after the program ended. He raised his head at the sound.

“It’s nothing, Feder” Hope said, standing up and pulling a throw over him. “I dropped something. Stretch out now, and go back to sleep. I’m going to bed too,”

As he lay down, Feder called out to Hope, “Hey, Hope! What are you going to do with the electro-camera?”

“I dunno. I was going to take it apart. Why? Do you want it?”

Feder, half-asleep but serious, responded, “Yah, I have some ideas…Let me use it. I’ll pay you back if they work out.”

Hope, heading towards her bedroom, beating her head with her fists in a private frustration Feder failed to notice, replied as calmly as she could, “No problem, you can keep it for as long as you want it.” Then she closed the door between them.

“Thanks,” Feder mumbled to himself, tumbling into sleep.

“Jackass, you asshole…” Hope derided herself in angry mutters, still occasionally giving herself stiff thumps across the head. “You evil son of a bitch. Who do you think you are? You are the devil, the killer of the world.” She paused, stared blankly at something unapparent to anyone who might have been watching the scene, and mumbled a word or two. Nodded. Stared. Nodded again. Then she looked around, as if searching for something she had misplaced. She got up and padded across the bedroom to her dresser where she extracted a half-open pack of cigarettes. Approaching the bed, she stopped again as if listening to something. Again she nodded, twice. “Yes, I promise, I promise,” she muttered, then added, cryptically. “I will, if you will.”

Sitting on the edge of the bed, Hope pulled off her jeans. She extracted three cigarettes and lit them. Without hesitating she drew deeply on all three then immediately applied them firmly to the skin of her upper thigh, holding them in such a way that they burned but didn’t quite go out until she finally crushed the heads against her. Quickly, she repeated the maneuver, and again a third time. Finally, she pulled her jeans back on, drew her T-shirt down and hastily hid the remains of the extinguished cigarettes underneath the papers in the bottom of her wastebasket.

Calmer, but a bit dazed and still not ready to sleep, the cigarette lighter and pack in full view on her bed, Hope sat on the edge of the bed quietly, her head bowed, her hands in her lap. Her face, usually so mobile, was still and blank. But it was not a serene blankness. Rather, it was a blankness of confusion, as if she were not quite sure what had just happened. After about a half hour, she lifted her head, took a deep breath, frowned, and stood to clear away the debris of her recent actions. No point leaving any evidence around for Feder or anyone else to see. She could take care of her own wounds, and anyway, three times three wasn’t so terrible. She had done much worse before. No one ever died from nine cigarette burns, she just had to shut them up for a while…

It was well after midnight before Hope finally lay down under the covers and turned off her lights to sleep. And when she did sleep it was fitfully and to a book of troubled dreams. But sleep finally came and she didn’t wake until after Feder had left for the morning. She didn’t wake until the knocking at her door became outright banging.

Disability, NaNoWriMo, Writing

NaNoWriMo – WE ARE HOPE’S FAMILY 2nd Installment of November Novel

November 12, 2013 Phoebe Sparrow Wagner Leave a comment

Chapter one (cont’d)

[Building 22 had been built in 1900 and its first elevator was installed in 1925 then reinstalled in 1955 with a (zibbit*) . In 19_5 when the Landlord first acquired the building as a young man new in the country, he installed a (zibbit*) elevator upgrades at great personal expense. But when the inspectors saw this elevator in January,1989 they didn’t like it at all. In fact, they condemned his entire operation at once and ordered a complete upgrade. They insisted he install what amounted to a brand new elevator.]

The Landlord balked. He didn’t tell the Inspectors this. Instead he decided to petition the City and get a waiver to redesignate Building 22 as strictly for a non-disabled population.

The petition claimed that he was unable to afford the construction of new elevator without increasing the rent on his tenants and unless he tripled their present rents, he could not afford them. But non-disabled tenants not only could afford the higher rents he needed, they would not need an elevator! Voila, the problem would now be solved via the stroke of a city official’s pen.

It might have happened that way, even in America, in 1989. The City is not a terribly corrupt place, but money has its perks and certainly it has a voice in places of power, as it does everywhere on earth. So had the Landlord decided to use his considerable power and money to back his petition, either somewhat legally or in a less than legal fashion, it is possible that he might have had his way. We have no way of knowing what might have happened. We only know what did happen. Which was that Silent Stashu Weissmann, Building 22, apartment3A, got wind of this plot and in his outrage shed his silence like a cloud releasing a torrent. He informed Bryony, the fourth floor tenant with cerebral palsy who had been immured in her apartment for weeks, dependent as she was upon an electric wheel chair and thus on the elevator to get her downstairs. Bryony was one of the few tenants who despite her disability had a regular job outside the building and needed to get to work on a regular basis. If she lost more than a month’s worth of time due to the lack of an elevator, she was threatened with the loss of her job, a job she cherished, even if at 20 she had held it for only a couple of years.

Worse, there was the possibility that without the income from her job, she might not be able to pay her rent and could be evicted, This, she observed to Stashu, was the height of twisted. Especially since it was the Landlord’s fault entirely that she was unable to get to her job.

“Ve do something about that,” promised Stashu. “If you cannot go vork, ve get vork come to you.”

“Yeah sure, that’s really likely.” Bryony shook her head.

Stashu agreed that since the War – nothing could be compared to Poland in WWII—but he hadn’t faced a worse situation since then, that this one beggared belief. Twisted was putting it mildly. The Landlord’s behavior was an abomination. And that meant a lot, coming from him.

Bryony nodded in appreciation.

“Ve write a letter, but not just any letter. A Letter to the Editor of the newspaper. They print, and people read and come to assist us. A new elevator, it will be grant us and they build it just for you. Trust me.”

Bryony had no reason to believe any of this, but she liked the idea of being asked only to trust this not unattractive older man with a Polish accent who said he wanted to write a letter to the newspaper in order to get her an elevator.

“Okay, let’s do it. We’ll write a letter. But what do we say? You talk it out loud and I’ll type.”

Stashu formerly and formally known as Stanley Weissmann had been 15 when Bergen Belsen was liberated after WWII. Though he had lost much of his extended family during the war, he himself had never been a camp resident. A student at boarding school in the late 1930s, he had been lucky enough to be hidden by a family of intellectuals who took him in and, when it was safe enough, fled with him first to France and then to the United States in 1939. Nevertheless, Stashu had seen plenty of brutality and read obsessively during his years in relative safety. Then the news and newsreels about Bergen Belsen came out. He absorbed everything he could about the camps and the treatment of the prisoners there. He could not learn enough, he felt, and such learning was not just of facts but was in its very nature penitential. He, Stashu, was not among the dead. He should have been. Therefore it behooved him to learn all that he could, all that there was to learn, and to never fail to pass on what he knew so that the world would never forget what happened. He did this so that the millions of people, killed during those years would forgive him, Stashu Weissmann, for surviving.

The western New England City was not a big place, only about 15,000 people from the inner core to the outlying suburbs, and if the truth were told it was insular, even parochial. Many of the people who lived there were at least third generation Americans and a large percentage traced their roots back to the 1800s. By the 1980s it is at least likely that many could have gone their entire lives without meeting a single WWII survivor from Poland. Most would never have known such survivors resided in their City but for the reporter who wanted to tell Stanley Weissmann’s story. Stashu at first refused, remonstrating that he had no particular story to tell. He had lived in Poland during the war, had managed to escape, and now he studied the Camps so as to expiate his guilt. And so he could tell the world about them, and the world could learn and would never forget. His personal story was nothing; the only story worth telling was that of the camps… So, okay, said the youngish reporter with a little laugh, tell me about the camps then. I want to hear those stories.

And so he had talked, and talked at great length about the concentration camps. He told her about how when American soldiers liberated Bergen Belsen, and found living skeletons wandering the grounds, dazed and barely human, they showered them with Hershey bars to assuage their hunger, knowing nothing about refeeding syndrome. To the soldiers’ horror, within hours many of these survivors lay either dead or writhing in agony near death, killed by the very chocolate that was supposed to save them. He spoke about the Warsaw Ghetto, about the bruising poverty and brutality of everyday life inside, and about the Uprising, the heroism and the ultimate crushing defeat. He talked and talked and when he was through, he thought the reporter would ask him a little about his own life, but instead she only thanked him for his time and left.

When the story came out in the paper, Stashu was horrified to read that the title of the piece made him out to be himself a survivor of Bergen Belsen. Not only that but in every instance, the stories that he told about what others had endured in the camps and ghetto, the reporter simply attributed to his intimate personal experience. He felt like the scum on a pond. What had he said to her that she should have assumed he lived through all that he talked about? Surely he never said anything that would lead her to believe what she wrote!

That newspapers get the story wrong surely happens more often than people know. And paper do not print corrections as often as they ought to. If they did, it seems likely that papers would be often more corrections than news. Whatever is the case, as the story had it, Stashu miraculously survived both the Warsaw Uprising and Bergen Belsen, which made him much more of a heroic survivor than he was. But try as he might, nothing Stanley Weissmann did could get the paper to print a retraction. They insisted that it was the spirit of the piece that was important, not the actual facts. Besides, Stanley was a survivor, was he not? If he did not survive the real Bergen Belsen, well, he spoke eloquently for the few souls who did, and that was a terrific public service, so he should just be quiet about it and leave them alone.

Stashu didn’t see it that way. He saw only that the reporter had told a lie, had made it seem as if Stashu himself had lied about his life, aggrandizing himself in a most improper way. They kept on saying that it didn’t make him bigger, not at all, Before this, nobody even knew who Stashu Weissmann was. So how could they think anything about him at all? He was a nobody. A NOBODY! the man at the paper had actually screamed at him after Stashu explained the truth of the matter and he’d finally – finally—understood that Stanley was not even the “Stanley” their reporter had written about, the apparent saint of the Warsaw ghetto. If Stashu was not that humble amazing human being, a phoenix risen from the ashes living among them in their City, then why not scream at him like a common irritant, a bug, a miscreant that had the temerity to tell the City newspaper-of-note to change what it had written?

“We stand by our reporters!” insisted the nameless man on the other end of the phone at the newspaper, “Furthermore, I am not going to stand here and listen to someone who does not even speak English properly tell me how to run a newspaper. When you have had a proper high school education and go to college and get a graduate degree in English literature, then maybe you can criticize, but not before then. Good day!” Then the phone went dead.

Stashu felt like a fraud, even though he had never intended to deceive the reporter and knew she must have known the truth even as she deliberately distorted the story for dramatic effect. Nevertheless, the damage was done and the damage to Stanley was incalculable.

After the story came out, people tried to find out where Stanley lived. The newspaper refused to reveal his whereabouts, saying that the poor man wanted only his privacy, that he had been through too much and would grant no other interviews. But the City was relentless in its drive to cover their not so homegrown hero with accolades and awards. They proposed naming a city park the Stanley Weissmann Heroic Parkland and in an effort to teach youngsters about WWII and about concentration camps, they named a program in such studies in their high school curriculum after him as well. Some of this could have softened the terrible sting of the article, having as it did, some “good blow by” as Giorgio, the former auto mechanic disabled with rheumatoid arthritis and ADHD and OCD in 3A put it.

But to Stashu it was all too little too late. He could barely leave his apartment by this time. Most of the other tenants in Building 22 did not know of the article, had not read the paper and did not know anything about Stashu’s history, either the truth or the fiction. They knew only that the gentleman in Building 22, Third floor, Apartment A had stopped coming out to feed the birds under the spindly maple trees in front of their building. They knew that he was seen rarely and at night, in dark hat and coat, leaving surreptitiously as if in disguise. The nice-looking older man who had once been as free with his bread crumbs as with ascerbic remarks, had now become taciturn. Worse, when spoken to, he responded only in Polish. His neighbors withdrew from him, not understanding. And Stashu retreated into what was left to him: silence.

It was Stashu’s letter to the editor that Premjit saw the morning after in the paper. Sitting with a cup of coffee at the breakfast table alone he read it casually the first time, not quite getting what it was all about. Then he read it again having taken in the signatures. Finally, trembling, he read it a third time, very slowly, registering the weight of each word, his face growing warm. When he was done, he took a pair of scissors and snipped the letter free from the larger sheet of newsprint and slipped the clipping into his pocket. Then he rose, ready to leave. He hesitated. Suddenly he had no wish to do whatever he had planned for the day. The luncheon, the games, the reading or planned events, they all seemed vapid and of little interest. He sat back down.

Taking out the clipping, he read it a fourth time., This time he nodded vigorously like a man charged with a mission. Indeed, Premjit was charged and changed. From this moment on, Building 22 would become his – his what? Call it a mission if you will. Call it his purpose in life. Call Building 22 whatever it is that gives a life meaning and direction. Whatever you call it, Building 22 and all its twelve tenants from that moment on, with and without an elevator, became the central focus of Premjit’s life.

When he rose again from the breakfast table, Prem had scarcely touched his meal, but he was filled nevertheless, filled with nourishing things like purpose and determination and a burning drive to help others. He was also filled with rage and bitterness, both of which eat at the soul. This created a stew of emotions that does not serve anyone completely well but in the young is especially problematic. Sometimes rage motivates young people to greatness. Certainly, they feel it does. At least it is true that they are prone to great wraths and to great deeds and who is to say that the latter can be accomplished without the former. It can only be said in Prem’s case that his enormous resentment towards and anger with his father, with regard to his treatment of the Tenants in Building 22, felt to him both motivating and liberating. Before he read Stashu’s and Bryony’s letter, Prem had felt at odds with his life, at odds with any future his father presented him. He hadn’t felt equal to any professional career, not even one that he could have rebelled into, say that of an actor (how his father would have detested that!) or an architect, had he any talent in those directions. But he had felt no strong negative emotions either. Since childhood his inclination had been to follow, well, the inclines and declinations that his life simply rolled into by chance, as if into a groove in the pavement or a runnel down the slope of a hill. His philosophy was that life should find the path of least resistance, for such was its proper path.

Up to the age of 23, until 1989, this “do nothing to resist life” policy had served him well, since he had had a successful school life and was poised on the cusp of adulthood with everything he needed for success there as well. But beneath the smooth exterior, Prem was discontented and in emotional disarray ever since college graduation in the Big City. He had come home to live in his childhood home with his father until he figured out what to do with his life but he was beginning to think the move had been a terrible mistake. The Landlord was not a bad father. In fact, he had been patient and even forbearing on the subject of Prem’s future, assuring Premjit that he himself had gone through similar struggles upon reaching the shores of this great country, yes even he, who arrived with family money and the burden of a green card and went straight to work acquiring Building 22. Finding life’s direction was easier in the old country, his father said. One’s family often directed where one worked and what one did and whom one married and where one lived. In India your surname could determine your professional status and of course there was the huge question of caste, which was not supposed to affect people these days to the same degree, but you knew it still did. So life was in that sense easier back in India, easier to figure out who you were at any rate, if sometimes harder to adjust to if you found yourself in a bad fit.

Prem knew this was supposed to be of comfort, but none of it reassured him. He could not see himself fitting into a Landlord’s shoes at his age. He shuddered to think of ever fitting them. It was far too much responsibility and worse than that, the daily ins and outs of managing real estate simply bored him. He couldn’t imagine anything more uninteresting! He watched his father poring over the papers and tables that he used to manage his holdings, and felt actual pity for the emptiness of his life. How little there was to hold an intellect in all those papers! Prem wanted something more. But what? What could he do that would stay rich and juicy through a lifetime and yet still yield an income his father would be proud of? What would pay, have professional standing and status and yet remain intellectually satisfying? No matter what he thought about, no matter what career he considered, nothing fit completely, nothing that is that Prem was both capable of, inclined towards, and prepared to do.

Like many educated and intelligent young men rootless and without a clear career goal one year out of university, he convinced himself he wanted to become a doctor. He looked into how to go to medical school, become an anesthesiologist. He had the MCAT applications stashed in his bookbag and summer school curricula for premed courses, too, when Stashu and Bryony’s letter suckered itself to his consciousness like a relentless hagfish and wouldn’t let go.

————————–

*Zibbit is the NanoWriMo word for “place holder” when you cannot do the research or cannot find the words for a concept and just write without them…you can do the proper writing later…

Art, Health

Trying to Hold it Together: Doing Art To Save My Life

October 6, 2013 Phoebe Sparrow Wagner Leave a comment

What the voices tell me to do, set myself on fire...In art therapy I was supposed to just play with the paint, do a blob and a line to get started. I got carried away with the child's paints and this is what resulted... — What the voices tell me to do, set myself on fire…In art therapy I was supposed to just play with the paint, do a blob and a line to get started. I got carried away with the child’s paints and this is what resulted…

I also finished a good drawing of a house in Tuscany, Italy and a painting of a child I started a long time ago, which I will post here. (The house drawing is at the framers, where it is being matted because it is too large for a precut mat. I am sorry that I have posted the painting with little faked watermarks on it, but I do not like the fact that people can simply print out my pictures otherwise and not have to pay me for the prints or the paintings…)

Acrylic portrait of African American Child in red watch cap and lavender sweatshirt... — Acrylic portrait of African American Child in red watch cap and lavender sweatshirt…

As for the rest, I am coping, that is all I can say. I try to “fake it till I will be able to make it” — meaning that I do not tell people how difficult it is, most of the time, because that only makes it harder. If I can try to ignore as much as possible what is going on that is all for the best. And when I cannot, I stay by myself and try to deal with it. Or i see someone, my therapist or a person I have hired to stay with me. Or I simply tough it out as best I can. Things could be worse. After all, I am not in the hospital and I have to keep telling myself that! 8)

In the meantime, I don’t have a lot to say. Doing art takes all my time and energy, and the rest is spent simply dealing with things and coping. Forgive me. I will be back. I just wanted to post this to allay anyone’s fear that I was back in the bin.

Art, Health

Healing Art as I go down the Rabbit Hole…

September 25, 2013 Phoebe Sparrow Wagner 11 Comments

TIm, my best Gay Boyfriend, eating watermelon.

And now for something really different. Cartoons that tell you about my life these days.

Pam's Having Car trouble — Pam’s Having Car trouble

Hope you can make out the text okay…It is a little difficult,. granted. But I tried to photograph the pages clearly as possible.

The next morning she retrieves the car and finds the same problems remain…Why?

She's GOt all the dates Wrong — She’s GOt all the dates Wrong and so much more…

Fear is ONLY an Almond...the amygdala in the brain is the NUT that makes us nuts! — Fear is ONLY an Almond…the amygdala in the brain is the NUT that makes us nuts!

Gargantua is the name of a book, and a character in the book. In it someone says, Appetite comes with eating. It helps me to think about that when I find i cannot find a way to put food enough in my mouth to keep going…I need to eat on schedule if only to keep my strength up.

It cannot be Pam Pam Pam al the time. No, he has to start to share of himself or the relationship is off. She CARES about him and it isn't all about HER! — It cannot be Pam Pam Pam al the time. No, he has to start to share of himself or the relationship is off. She CARES about him and it isn’t all about HER!

Meanwhile I am not in a good state at all. Bill wanted to talk about an email I sent him saying as much as the above, but I am much too shaky to be able to deal with it. I just cannot use him to talk TO alone…I have friends with whom we have shared equally all along, and so I do not feel a burden now when I am in trouble. But Bill has ceased talking about himself a long while ago, and I am to blame for letting him withdraw. I felt slighted but felt that perhaps he was reserved and saved his intimate moments for his girlfriend…But no more. I cannot be using HIM as a pair of ears and feel that he shares nothing back. THen I feel guilty and a selfish user! That isn’t fair to me let alone to him…It won’t happen. It won’t be. Not any longer. Hear that, Bill? YOU are an important part of our friendship, as a person,. and if you don’t want to be a person, I do not want a NON-person as a friend.

Enough. I feel like I am going to die. And now even the doc doesn’t want to suggest that I take even a sliver of Abilify now that I am off it…So I am really up a creek..Up a creek because I dunno how long I can tolerate this. I smell rot rising inside me, smell it for real., Like my body is rotting from within…Where is it coming from? I brush my teeth several times a day (unusual for me!) but still the rot smell persists!

I am not a praying person, but I know many of you are. I am in such deep shit. I will be going to art therapy today, perhaps that will bring some relief. in the meantime, if you feel prayer can help, pray for me…?

Thank you , all of you, for hanging in with me. I am NOT a quitter, I am not a quitter!

Art, Health

Antipsychotics Block Pleasure in Life: It’s All About Dopamine…

September 19, 2013 Phoebe Sparrow Wagner 19 Comments

It has always been about Dopamine, but they never told us that impeding our dopamine receptors would impair our ability to feel pleasure and the high of "reward" -- No wonder our "negative symptoms of "not wanting to do" so many things! The drugs blocked our native dopamine flow! (Decades ago they knew that it has NOTHING whatsoever to do with schizophrenia, but they persisted in the lie nevertheless... — It has always been about Dopamine, but they never told us that impeding our dopamine receptors would impair our ability to feel pleasure and the high of “reward” — No wonder our “negative symptoms of “not wanting to do” so many things! The drugs blocked our native dopamine flow! (Decades ago they knew that it has NOTHING whatsoever to do with schizophrenia, but they persisted in the lie nevertheless…

To explain the picture/letters above, I was practicing some lettering, briefly, and did not know what I was writing until later…which makes what I wrote all the more interesting a message from my subconscious. Clearly I agree with almost everyone else I have ever heard from: Haldol is the drug from hell! About the rest of it, well, Psychiatrie macht frie derives from the sign that was posted above Auschwitz and other concentration camps during WWII, Arbeit macht frei, or Work makes (you) free. So this transposition is meant to suggest (sardonically) that psychiatry will free you in just the same way… NOT!

What particularly sickens me personally is the damage the fiction called the Dopamine Hypothesis — how an excess of dopamine causes schizophrenia — may have done to the millions of people like me who have taken antipsychotic drugs for decades, unknowingly buying into the medical model and this notion that we somehow had too much dopamine coursing around in our brains.

Life is ALL about dopamine, LIFE has always been about dopamine. Here are some of the human functions to which dopamine is essential

movement
memory
pleasurable reward
behavior and cognition
attention
inhibition of prolactin production
sleep
mood
learning

Why on earth would anyone deprive another human being of the one neurotransmitter that allows us to feel good about things? It would seem to be a diabolical plot, if anyone actually did such a thing, right? And yet, for decades right on through today, that is what doctors want us to do, block the transmission of dopamine to the brains of those of us diagnosed with schizophrenia. They know, of course, that it is impossible, that the brain up-regulates the flow of dopamine in such a way as to thwart at least in part the antipsychotic receptor blockade. Homeostasis will be re-established eventually, even if at abnormal levels due to the drug’s presence.*

No one can live without dopamine, after all. But to understand the necessity of dopamine, and that they have known for years that an imbalance of dopamine metabolism is NOT implicated in schizophrenia, and finally to “grok” that they have nonetheless perpetuated the lie that is the “dopamine hypothesis” just boggles the mind with its enormity. How can we believe anything they tell us about negative symptoms, now, when as one website informs us:

“Low D2 receptor-binding is found in people with social anxiety or social phobia. Some features of negative schizophrenia (social withdrawal, apathy, anhedonia) are thought to be related to a low dopaminergic state in certain areas of the brain.”

The atypical AP drugs induce a D2 receptor blockade as a matter of course. After all, if you don’t feel any reward-sense from your life and living, your normal dopamine being in an antipsychotic blockade, why would you want to change your clothes, or take care of yourself, much less bother to go to work or even think? But we have been led to believe that such negative symptoms are part of schizophrenia and NOT part of the drug treatments for it! No one told us they were taking away all our incentive to do anything, to even move or think. They told us they were helping us, not hurting us, not destroying our lives!

Even more diabolical, to my way of thinking is the idea that some doctors actually add an atypical antipsychotic onto the treatment of mere depression. Can you imagine how you would feel if you were taking an SSRI (which is ineffective) and which already deprived you of sexual satisfaction or any sexual feelings at all, and then you are given an adjunctive antipsychotic that subsequently deprives you of dopamine? It might add twenty to forty pounds or even more in no time, up your cholesterol and blood sugar, and then deprive you of any feelings of reward or pleasure…Ah but it will boost your antidepressant’s antidepressant activity? J’en doute fortement… I doubt it highly!

What do the doctors care? Either they bought into the drug company’s literature and haven’t read anything independently since med school…or they are on the take themselves from Big Pharma in some fashion and don’t give a damn.

We need to be on the look out for ourselves, because god knows the doctors are not on our sides, most of them. They cannot be. This is their bread and butter, folks esp the psychiatrists and if they cannot prescribe pills, what will they do? They won’t be “real doctors” any more and their prestige will plummet yet again…OH NO! The fact is, they need to learn to do psychotherapy again, or get out of medicine because they cannot prescribe pills that do not work, and there are none that do! None that do reliably and well or better than placebo. In fact, except for the occasional use of a benzodiazepine, and the judicious use of cognitive enhancers for the proper people, and meds for sleep, I am convinced that precious few drugs in the psychoactive armamentarium are worthy of anything but the dustbin.

I think most are ONLY placebos, if they do anything at all. Frankly. And I say this despite having once written testimonials in praise of Zyprexa and other drugs…I dunno, I dunno. How could Zyprexa be anything except a placebo? It is a dirty drug that hits nearly every known neurotransmitter of importance…And yet we do not know how it does what it does…and it has horrendous side effects. That much we know. Since we do not have any reason to think it is the action on dopamine or serotonin that is the “antipsychotic” activity, in essence we cannot say why or if it does anything at all. ALL the AAPs drugs work on the neurotransmitters in a more or less dirty fashion. In fact the OLDER drugs were less dirty, being more specific to just dopamine!

I reiterate, there is no “chemical imbalance” in schizophrenia, or bipolar “illness’ or in depression. No one has ever proven or shown any such animal ever. Only after patients have taken a drug to “treat” such conditions is there ever an “imbalance” and this imbalance is a direct result of having taken the drug. PLEASE remember this and question your doctors next time they warn you that if you stop your meds your “chemical imbalance” will reassert itself and make you sick again. Ask, “What chemical imbalance and where did it come from? What chemicals and what is the normal level I should have?” I know I know, the doctor will say, dopamine, if you “have” schizophrenia, or “serotonin” if you “have” depression. Lord knows what she will claim if you “have” bipolar tendencies of one sort or another, as so many millions upon millions of Americans these days have been told they now do…But it isn’t true. Not even if they claim it is. There has never been any proof of altered neurotransmitter levels and in fact it is the opposite: drug-naive people with schizophrenia and depression, that is to say, those who have never taken any medication, have been shown to have the exact same dopamine and serotonin levels as anyone else!

As for those who suffer from the condition called “bipolar” — You know, it used to be a very rare condition, manic-depression. Now, you see “bipolars” coming out of the woodwork everywhere. One used to have to have been crazy-manic at least once, to the extent of having been hospitalized to qualify for the diagnosis, and this made sense as it was restrictive and not a broad umbrella. Given that the illness was considered a very serious one, no one wanted to bring too many within the definition. Now, with so many drugs used to “treat” (ha ha ha) the condition, and with the help of DSM IV and 5 to bring patients to the drug companies’ financial assistance, you need only complain of a garden variety “depression” to be counted as bipolar…

But remember: 1) the drug companies treating bipolar etc only want to make money, 2) the drugs treat something — a neurotransmitter imbalance that doesn’t exist 3) bipolarity is a fiction that keeps lengthening, like Pinocchio’s nose, with every newly expanded definition…

Think about malaria, a real illness. It doesn’t make more people ill just because it gets redefined. Malaria is caused by a protozoan (injected through the bite of a mosquito), and it sickens people who are vulnerable to the ravages of that organism inside the body…in the same way each time. You don’t “get” malaria more because a financially- interconnected organization of doctors/drug companies decides to change the definition of what constitutes malaria. No, you get malaria the way people always gotten malaria, largely through not using mosquito nets and other preventive measures…i.e. via a mosquito bite.

Ay, this is NUTS! It should not be so fricking easy to fit everyone into a diagnostic category of mental illness. Emotions are NOT illnesses by definition, they are normal and necessary, even excessive emotional reactions are quite normal; they happen every day to everyday normal people. Some cultures define themselves by their emotionality! It behooves us to remember this and not pathologize it.

So too, think of this: depression frequently is just sadness, folks. We used to know the truth of the saying, “This too will pass…” There are problems in living that are just problems in living, and I think that some people for whatever reason are simply miserable, without having a mental illness. They would not do better being labeled with an illness or being treated for one. In fact, I have seen people in states of abject misery do a great deal worse under the burden of a label…

I have had it. I do not trust a drug company or a prescription at all, none of them. The foxes are in charge of the chickens and they are up to no good, no good at all. So this weekend I am OFF all Abilify. HURRAY! After that I start cutting out the Geodon…(I have already halved the Ritalin simultaneously with the decrease of Abilify. I had to, I simply don’t need the Ritalin as much, as I am not as sleepy. After Geodon, there is only the Topamax, which I take for seizures and migraines.. Have to decide about that one. I want to be off it, I really do. But can i?**

*Note that although some of these conclusions are my own, I drew most of the research I have based them on from my readings in Robert Whitaker’s fine books MAD IN AMERICA and ANATOMY OF AN EPIDEMIC. I highly recommend reading both of them, which can be accessed through the link I provide at the top of the page in my blogroll. The link goes directly to ANATOMY but MAD can be found easily through there. Good reading! And please do let me know what you think at any time. (Adding this note at a later time, very much the same information can be found in Dr Joanne Moncrieff’s books — a British psychiatrist who came to similar conclusions as Whitaker. Her book on antipsyhcotics is THE BITTEREST PILLS, and her book on psychtherapeutic drugs in general is THE MYTH OF THE CHEMICAL CURE.

**writing in Dec 2017 i have never been able to get off the Geodon or the Abilify, nor the other drugs, though i have cut the Geodon in half somewhat successfully. (I am unable to speak at present, but i do not believe the two are linked, as i dropped the Geodon/ziprasidone dose more than a month ago and the muteness started less than a week ago). That said, i still do not believe they help me. I just maintain that once you have been on these drugs for literally decades as i have been, more or less by force, then your brain changes in response and ends up “imbalanced” and in that sense alone does need the drugs.

Art

NEW ART AND MEDS REDUCED

September 12, 2013 Phoebe Sparrow Wagner 3 Comments

So she is seeing a psychiatrist....He holds her future in his hands. If he prescribes medications she could be impaired for life.. — So she is seeing a psychiatrist….He holds her future in his hands. If he prescribes medications she could be impaired for life..

Gullwing MErcedes 300sl — In the Vimeo video “Poetry in Motion”, a man who dreamed all his youth of owning one of these gullwing 1955 Mercedes 300SL , drives one, everywhere. He speaks of how others trailer theirs, very carefully, but of the ultimate joy of driving his dream car…Why else own it?

The LIttle People, who talk to me from the Objects in my room — The voices i hear are OUTside my head, not inside it…which makes it hard to understand that they are generated from within my brain, even though I appreciate now, at this moment, that they must be….

I am assembling my own private, so to speak, “treatment team” for recovery. This is because it turns out that to go to any facility for real no-drug no medication recovery, somewhere like Windhorse in Northampton, Massachusetts, or Cooper-Riis in NorthCarolina, you have essentially to be filthy rich. Neither place so much as returned my application email (supplication) once they knew I “only” had about — well, let’s just say that I could not afford their fees of up to $20,000 per month, and certainly not for the requisite six month program just to start with! So essentially, you have to be wealthy as Croesus in this country to get any help whatsoever to recover, or you are on your own.

Luckily a little family assistance does permit me to hire a few people to help me — which I know some people are not fortunate enough to do. So I did — I hired an art therapist this past week and I meet with her next thursday! This is something I really look forward to. While I do art daily, I do not usually express my feelings easily or spontaneously doing art. I have to think things through doing art. But i want to do it quickly and find out things or learn to let go and feel my way doing art. And I have never done art therapy, at all so I dunno even what it can offer, except that I cannot believe it won’t be helpful, esp now that I am done to 5mg Abilify as of Saturday. And no abilify at all by the following Saturday, if it turns out that I can tolerate the drop to nothing.

Now, I do take Geodon as well, so I think it will be fine. But we will see. So far so good. But I did say that I would take it more slowly if I ran into problems. Once the Abilify is out of my system, I will wait a little while, then start reducing the Geodon. No sense in waiting too long. If I have no difficulties apparent from the loss of Abilify, why wait? THEY thought i decompensated almost immediately at Yale New Haven Hospital from having “nothing on board.” My contention is that I decompensated due to the abuse I suffered at their hands, and as a result of their megadosing me with IM Haldol, torture for anyone.

That’s about all the news I have for now. And it is getting late so I’d better go to bed.

Oh, by the way, if the pictures look a bit different, it is because they are done with markers, copic markers for the most part, and not with colored pencils….So you are noticing my use of a different medium.

Health, Trauma

Trauma and Connection: You Need Not Be Alone

September 8, 2013 Phoebe Sparrow Wagner 1 Comment

When Monica Cassani posted this video (see below) on her wonderful blog, BEYOND MEDS.com today, I was not sure I would watch it, mostly because I often do not have the patience to watch videos, no matter who recommends them. (Sorry about yesterday’s recommendation, an hourlong one no less, but it is vitally important to me and my topic…I still highly recommend it, if you cannot read Anatomy of an Epidemic…). Nevertheless, something about a video on treating trauma, perhaps the face of McElheran on Youtube, perhaps just my mood at the beginning of this day, impelled me to click on the little triangle that started it playing. I was pulled in almost at once. In fact, I was soon in tears, because McElheran may speak to us all, but most importantly she spoke to me…her words on trauma included me, personally, for once.

That she did so, moved me beyond words, because at that moment she validated my own manifold experiences of trauma, which were mostly NOT of potentially mortal events, even if I may have believed them to be so (when paranoid or psychotic). I will embed the video here, so you can watch it now, and come back to my blog post afterwards if you so choose. Or watch it whenever you like. It is — truly! — only 16 minutes long, and very compelling, so do not worry that it will take a lot of time.

Something about what she talks about reminds me that “Nothing human is alien to me…” We are all capable of everything, and anything, given the proper circumstances. Her compassion for human behavior is astonishing and moving beyond words.

I need to say this because no one who “knows me” thinks I am “capable” of things like calling people such vile names as those I called the aides and nurses regularly at YNHPH, or of stripping and defecating and smearing feces without even thinking or considering the consequences… But those are important words: “without thinking” and “without considering the consequences” because they indicate that I was behaving wildly impulsively, as indeed I was. Think about the situation: Six to eight people, some of them security guards (self-professed former police officers) had just violently and brutally assaulted me, thrown me onto a bed, held me down (causing physical pain to the point that I screamed in reaction) and pulled down my pants, giving me three intramuscular injections into the buttocks, then holding me down some more until they felt “safe” to let go…(One of them actually telling me they would press charges for my kicking her in the stomach while she was restraining my knees!)

Once i was freed, I made a dash to get out of the room, wanting to “do laps” around the “square” hallway that gave the Washington Square 2 unit its name. No deal. They physically prevented me from leaving the small single room, that had nothing in it but a hospital bed and tray table. I recoiled, enraged and manically in need of doing something, anything! Suddenly, I felt my bowels engage, roil, want “to go.” But the bathroom was down the hall…No matter, what the F—! Who gives a shit, in fact.

Without thinking a second thought about it, I simply pulled down my pants, squatted, and unloaded on the floor, to not so silent on-lookers astonishment and incredibility. Then I removed my clothing altogether. But another WTF moment seized me, then. The steaming pile of sh-t was there, and suddenly I “knew” what to do with it…and I did not give a sh-t that this meant using my hands or getting it all over me or anything. I just didn’t give a flying femtogram. I do not know why. I didn’t even smell anything. I just picked up handsful of the feces and smeared it across the walls. But not blindly and wildly, no, I was writing something, I remember now, I wrote something on the walls with it, though I do not know what any longer. And I do not think anyone took the time to read it. I do not believe anyone bothered to notice that I was not merely smearing but writing in shit...

The point is, I did this as a response to trauma, small as you might say it was. I felt traumatized. I felt brutalized. And I felt and was out of control as a result. This is not to say that my impulsive behavior served any purpose other than venting rage and sheer revenge at my abusers. It certainly won me no friends and no compassionate understanding from anyone. It could have, someone might have understood it for what it was, and seen that what they were doing to me was in fact brutality and traumatizing…They had after all diagnosed me with PTSD, so WTF did they think they were doing?

It doesn’t help, frankly, that “Dr Angela” believes that they were “on my side” and “doing their best” and “actually helping me” all along. I do not agree. I do not believe that. I think they were hidebound in their determination to break me, and if they could not see that they were perpetuating harm, they should have.

Okay, okay, okay Pam. Calm down. Calm down. Remember you are practicing forgiveness, not worrying the sore into an infected mess! 8)

This is hard. It is so difficult to forgive and let go of harm that no one admits to having done, one, and two, claims was actually for my own good. To help me!

Bull feathers! I still have exquisite backside piriformis muscle pain when I move in certain ways or even sit down on my right hip. And if I take off a T-shirt with the usual crossed arm movement, it causes agony in my deltoid muscles from the injections they gave me there too.

But forgive and move on, forgive and move on…I need to take a deep breath. Think about other things. Get ready to go out for coffee as I have made a date with an old friend of mine I haven’t seen since that debacle at the Institute of Living last winter. We always have great talks. It will be good to see her!

Yes, I will leave this on that note. The fact that I do not isolate myself, but that I have lots of friends and do things to keep myself busy and fulfilled and purposeful in life. Trauma and memories and flashbacks of trauma may still get me, and they get me in the gut a lot, but they haven’t got me completely over a barrel the way they might have. There was a time when I was more isolative and friendless but not any more. Not anymore.

	elizachucls on A Death of a Friend from ALS
	muzzy7 on BONES ARE BEAUTIFUL TOO by Wac…
	Phoebe Sparrow Wagne… on A Death of a Friend from ALS
	stevenwesterrmann on A Death of a Friend from ALS
	Scarlett on worth repeating and rereading…

WAGblog: Dum Spiro Spero

Tag Archives: Health

Article From New Haven Register On Connecticut’s Excessive Use of Restraints, With Full Commentary…

Connecticut hospitals restrain psychiatric patients at double national average

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A Blog Post Reply to “Alice”

THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work…

My only Sweetheart, Dead, and a Poem About Her…

WHOM IS IT REALLY WE KILL? OF WHOM IS IT REALLY WE DREAM?

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Impromptu Starbucks Sketch (Hey TexasTom, If you are brave enough, so can I be…!)

PSYCHIATRIC ADVANCED DIRECTIVE -2014 – Words to Caregivers (Short and Simple)

Pamela Wagner’s

PSYCHIATRIC ADVANCE DIRECTIVE 2014

FOR WHEN I AM HOSPITALIZED OR INFORMATION TO HELP TO AVOID IT

HOW TO INTERVENE IN A CRISIS:

Gouache of Running Shoes by Pamwagg

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NaNoWriMo – 3rd Installment, November Novel: We Are Hope’s Family

NaNoWriMo – WE ARE HOPE’S FAMILY 2nd Installment of November Novel

Chapter one (cont’d)

Trying to Hold it Together: Doing Art To Save My Life

Healing Art as I go down the Rabbit Hole…

Antipsychotics Block Pleasure in Life: It’s All About Dopamine…

NEW ART AND MEDS REDUCED

Trauma and Connection: You Need Not Be Alone

"While I breathe, I hope"

CONNECTICUT VS. THE NATION

LAGS IN DISCHARGE PLANNING

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WHOM IS IT REALLY WE KILL? OF WHOM IS IT REALLY WE DREAM?

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Pamela Wagner’s

PSYCHIATRIC ADVANCE DIRECTIVE 2014

FOR WHEN I AM HOSPITALIZED OR INFORMATION TO HELP TO AVOID IT

HOW TO INTERVENE IN A CRISIS:

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Chapter one (cont’d)

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"While I breathe, I hope"