This gallery contains 4 photos.
This time you should be able to view this on an Iphone or Ipad.
I have been diagnosed with schizophrenia for nearly forty years and was forcibly medicated and involuntarily hospitalized many times over those decades. Ordering me to take an “anti-psychotic” medication and then physically compelling me to submit to IM injections never got me to a point where I saw the “error of my ways” much less helped me to recover. How can that be? Take my 3-week stay at Yale New Haven Psychiatric Hospital in the summer of 2013. Because I refused the prescribed Zyprexa, I was repeatedly held down and forcibly injected with IM Haldol, a so-called first-generation “anti-psychotic.” Call Haldol an antipsychotic if you will or be honest and just call it a behavioral management drug, it subdued me, yes, it did indeed. It stupefied me. And in the end I cried “Uncle.” But before I surrendered and submitted to their demands, I only got worse, regressing to a degree so pathetic I find it hard to believe it now. But that this happened was a connection the doctors and staff never made,, not even when after I was forcibly injected, I would strip, defecate and write on the wall with my feces.
It seems obvious, at least from my experiences, long and manifold, that involuntary treatment does not work, at least not the way people think it will or should. Over the short run, you can indeed make a person take medication (which is what this is all about in the end, drugs, not something like psychotherapy being forced on anyone…). You can threaten a person with hospitalization “or else,” and frighten her into swallowing pills. And if she does refuse, you can hospitalize someone for refusing and medicate her against will just as you do now to certain in-patients.
You can, if coercion is your game, put certain involuntary in-patients into 4-point restraints, pretending that her very resistance makes her a danger to others, punishing her for fighting the team that holds her down. You can even inject her with so-called “depot” drugs that once in the system continue to work for as long as a month.
Clearly, people break, faced with threats and coercion and many eventually come to accept treatment “voluntarily,” at least for a time. They may even appear to “get better”. Nevertheless this sort of improvement is often shaky at best.
Involuntary — forced — treatment is the worst possible thing you can do to a person with a serious psychiatric condition, especially schizophrenia. Symptom improvement will likely be temporary, even with medication “on board.” I have yet to meet anyone who actually gained that magical “insight” via coerced medication… And given the side effects of all the known drugs, very few people who are not voluntarily in the system consent to take them for long — for good reason.
Moreover, as recent research has shown, there is every reason to suspect that psychoactive drugs, especially the so-called antipsychotic drugs, are far less efficacious in promoting real and permanent recovery than we have been told. However, the effects of trauma and the aftermath of involuntary treatment can be disabling, even permanent. I know; I have been there. As a result of my experiences with forced treatment I now suffer from PTSD in addition to the diagnosis of schizophrenia.
Although at present I choose to attend outpatient treatment, I do not always comply with taking medication, especially when it make me feel bad. I won’t even take meds that others claim alleviate my symptoms. If a drug makes me feel horrible inside, I assert the right to refuse it. Sometimes treatment can be worse than the disease. Alas, because of this, I have, while in-patient, all too frequently been subjected to forced medication hearings, hearings which I believe I was pre-determined to lose, the deck being stacked against me.
At the former Hospital of St Raphael’s in New Haven in 2004, I was not only forced to take the atypical antipsychotic drug Zyprexa, despite the fact that the medication had caused me to gain 60 pounds, elevated my cholesterol and triglycerides sky-high, and made me pre-diabetic. The probate judge, on the instigation of my in-patient psychiatrist, also ordered that I undergo involuntary ECT otherwise known as electro-shock treatments. I was so terrified of the side effects and the real brain damage ECT was inflicting on me, that I literally awoke,mornings, with excrement in my underwear.
In the more recent past, my experience at Manchester Memorial Hospital in Manchester, CT was just as horrendous. This, along with an equally brutal experience, at Middlesex Hospital in Middletown, Connecticut 6 months later combined to such trauma that I was diagnosed with the additional problem of PTSD. As recently as the winter of 2013, at Hartford Hospital’s Institute of Living, I was threatened with forced ECT, kept in seclusion for three weeks and restrained for nearly twenty hours multiple times. Why? Because as the record states, I was unpredictable and “did not follow directions.”
I would like to tell you about the Manchester Hospital experience in a little detail, as I believe it will give you a “taste” of where IOC, when taken to its logical conclusion, can and will lead.
I was admitted there on a 15-day physician’s emergency certificate (PEC), and the attending, a certain Dr Z, summarily took me off the two-antipsychotic drug combination, plus an anti-seizure medication and the anti-depressant I had come in on. This drug “cocktail” had worked for me since 2007 without distressing side effects. I was not only willing to take it but I felt it helped me function better than I had in years. But the psychiatrist at Manchester Hospital decided, and I quote, “since you are here, by definition your current meds aren’t working. I will put you on something else.” Did it matter to him that I had already been tried on nearly every other drug on the market, old and new, and none worked as well and with as few side effects as the Abilify/Geodon combination I was then taking? No, he was the doctor and the doctor’s decree was law.
As a result of his ministrations, the “offending meds” were removed and I was again ordered to take Zyprexa, despite its known and severe side effects. Over the next few days, I continued to refuse it. Naturally, having been abruptly withdrawn from all my usual medications, I began to decompensate further, having nothing in my system. A forced medication hearing was held. For some reason, Dr Z decided I would not be given Zyprexa after all, but one of the oldest neuroleptics in the PDR, Trilafon. When I objected, he said only that if I refused even a single dose, I would be injected in the buttocks with 5mg Haldol.
All too familiar with Trilafon’s side effects — from akathisia’s maddening restlessness to a constant fine tremor in my fingers, I refused to swallow the pills. But neither would I willingly lie down to take a needle full of “vitamin H,” Haldol being a drug just as awful as Trilafon if not worse. So I resisted, physically, when it came to the nursing staff grabbing me and pinning me to the floor. I fought them when they so much as approached me with the punishment hypodermic.
At first, they just overpowered me, injected me and walked away. But after a few such tussles they started calling “a code” to bring in the goon squad. I do not know how many times this happened but the goon squad consisted of several people including uniformed security guards . Without a pause, they would barge into the room, assault, restrain and inject me, despite my terrified screams.
This sort of violent encounter happened so many times, along with predictable and regular use of 4-point restraints and/or solitary confinement, where I would be locked in their dark, cold seclusion room, that I literally lost track of time. Indeed, but for whatever I managed to record in my journal after each episode, and from their single-viewpoint one-sided hospital chart, I would have no idea what happened during most of that entire three week period at Manchester Hospital, though from my bodily reaction when thinking about it, I know something very bad happened.
Why do I tell you this? Because this sort of aggression, even torture is what forced medication and involuntary treatment lead to much more often than you may want to believe.
If H.R. 4302 passes in the Senate and expanded IOC is instituted in the states where it is now allowed, how precisely do people intend to treat a person with a “mental illness” who does not to want treatment? If a person refuses to leave her apartment to be hospitalized, and is able bodied and physically strong, do they propose to assault, even Taser her, though innocent of a crime? Once she is unconscious and no longer able to resist, do they then intend to hospitalize her against her will so that she can be forcibly medicated, with the threat of 4-point restraints as a back-up if she continues to resist. Or perhaps they expect that trauma itself to scare any individual into compliance?
I am not against all psychiatric treatment. I am definitely not against all psychiatric residential treatment facilities ( including hospital psych units…) But we have curtailed the availability of in-patient beds at present to our detriment, even as we have allowed drug company research scientists and providers to focus almost to the point of tunnel vision on the medical model. This has brought us right to this notion that if we institute IOC, and can force a given individual to take medication, we will be working on a problem that has a real and objectively verified solution. In point of fact, however, there is absolutely no proof that antipsychotic drugs lower violence on the streets or have any effect at all on the incidence of violent crime. That said, if a national IOC law mandated forced treatment, and hospitalization, where are the psychiatric beds to follow through on that mandate? Downsized, in most states to ghosts of their former abundance.
If this is what supporters of H.R, 4302 anticipate and believe in: IM injections, four-point restraints and all, then I must ask: When will you learn that you cannot treat anyone with violence and expect the outcome to be a desirable one? What you propose to do is to subject persons with psychiatric disorders to more trauma and violence than ever. You want to expose them to a“treatment” that is just euphemism for brutality.
I fought back, tooth and nail, biting and clawing the goon squads that descended upon me and attacked me, intending to shackle me by the wrists and ankles to a bed, because as they told me, “ I didn’t follow directions. Yes, I resisted. Who would not have? I was terrified. What did they expect me to do, politely thank them?
This sort of coercion and cruelty masquerading as care doesn’t help anyone get better, it only chases them the heck out of Dodge and as far away from “treatment” as they can get. Oddly enough, little do “Escapees” from treatment such as these know that they might be the lucky ones. As longitudinal studies of treated and untreated individuals with schizophrenia are coming to light, it has become apparent –even Thomas Insel, head of the NIMH admitted this on his blog — that treating – medicating — schizophrenia long-term has had unintended consequences, one of which has been to inhibit complete recovery. By contrast, those persons who walked out or were forced out of treatment, “back wards patients,” seemingly hopeless — it turns out that these people to a much greater degree than those who stayed in the system, recovered on their own, without help, largely by stopping their medications.
A majority of these “lost souls” found themselves only after they ceased taking medication and ceased consuming mental health services. Because they became wage-earning, productive citizens and not mental health service users, many are now “lost” to the mental health system. To experience so few symptoms as to be unknown the to provider community despite past illness, surely this must be accounted the best of all possible outcomes.
IOC works — or doesn’t work — according to a medical model that imposes medication on the unwilling, with no end point, insisting that mental illness is no different from diabetes. But as Dr Insel has admitted, this is not true and apparently never was. New models are needed. Violence is no solution, nor does it cure anyone to impose treatments of dubious value and great harm on those who are different from some mythical “norm. “
(I sent a version of this to Connecticut’s Senator Blumenthal and several other people, including the New York Times, without response, so I am posting it here for public consumption and comment.)
Still not playable on ipads or iphones, not sure why. I think the sound will work. for what its worth…
No music or sound, sorry. Best viewed in small screen as the conversion to Quick-time made the files smaller and hence less crisp when seen on a large screen…I’m sorry but this doesn’t seem to be viewable on an ipad..Dunno about android devices. At least I notice that the controls are unavailable on my ipad at any rate…Will try to find another format that will work and re do it…SO SORRY!
MichelAngelo’s Moses without the horns…
The bird was first made of paper clay with floral wire legs, then I added a layer of modeling paste and white glue. I painted it with nail polish, hence the lack of good detail as nail polish brushes leave a great deal to be desired! The water is a piece of blue acetate film glued to a mirror (both of which I used because i had them lying around…), in a serendipitously rippling pattern. The “shore” is actual dirt mixed with polymer matte medium, which also glued a few stones to the mix (just in case you wanted to know! ). The whole deal is glued to a box top to get it off the “ground.” Do click “Like” if you like this! (It took a whole lot of doing to get it even half right.) Thanks!
By the way, HAPPY THANKSGIVING! And to those who celebrated it HAPPY THANKSGIVVIKAH
I want to finish writing the novel now that I have started it, and perhaps using the same agency I used for DIVIDED MINDS, if they want it, find a publisher. But we will see. I may have 50T words, and more, but who knows if it will be marketable at 100T words, and whether or not anyone will publish it. I may post another chapter here or not…I dunno. Doesn’t seem like it gets many readers (from my reading of the blog stats.) Anyhow, I don’t use the stats much because so far as I can tell much of blog land is a popularity contest of Like me and I will Like you back. And who knows who actually reads anything? So if I have a few loyal readers, that is all I care about. YOU, I mean, who is there actually reading what I write. Thank you!
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.
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.
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.
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.
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!
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.