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

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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

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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)

NaNoWriMo, Writing

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

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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 259th day of the year. Premjit Mukherjee, was their friend, and the building manager, aged 47, born on April 1, 1964, a Wednesday, the 92nd day of the year. Stashu Weissman, was from Poland, aged 79, b orn in 1931, Dec 25, a Friday 359th 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 121st day of the year. Their Landlord Mr. Mukherjee, was age 71. He was born on Sunday, April 27, 1941, the 117th day of the year. On the fourth floor, Bryony Leurile aged 44 was born on the 82nd day of the year, Sunday, 1967, March 23rd. Then there was Kashinda Whitmore, age 27, who was born on the 305th day of the year, in 1984, on Halloween, a Wednesday. Darryl Strakesley aged 31 was born on  a Saturday, the 255th day of the year 1981, Sept 12th. Lupita Villareal, aged 62 was born on Sunday, the156th 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

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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.

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*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…

NaNoWriMo, Recovery, Writing

NaNoWriMo – First Installment of November Novel (first draft)

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WE ARE HOPE’S FAMILY 

In the beginning we called ourselves Hope’s Family just so we could get into the hospital to see her and to get her out of it too and so we could be seen as legitimate in taking care of her. But then the sound of the name began to ring in our ears like what Stashu calls the clarion bell of freedom, so we kept it and from December 2011 on that is what we have been known as, everyone in Building 22, including Premjit the Landlord’s son. We do not include, however, the Landlord. No. He is not part of Hope’s Family. He doesn’t like Hope one bit. He doesn’t even like Feder.  In fact, the Landlord was the reason we pulled together and became Hope’s Family in the first place. So while we are aligned against him, in a sense we have the Landlord to thank for making us one.

CHAPTER ONE: OCTOBER  2011

Premjit opened the door to Building 22 and noted the smell before he noticed the cracked doorjamb. Burned paraffin. Too much of it. Which could only mean one thing, that the utilities had been turned off again in some of the tenants’ unit and they were burning candles for light. Lord only knew what they were doing to cook their food. Premjit hoped they were using Sterno and not portable gas stoves in the stuffy little apartments all of which lacked adequate ventilation at the best of times. He could only hope against hope. Just last winter they had lost  a young man to carbon monoxide poisoning, and nearly lost the tenant in the apartment directly above him, when he tried to cook his boxed macaroni and cheese dinner on one of those treacherous stoves in his apartment. Not only that but after he passed out, he had nearly burned the building down but for the quick thinking of a neighbor who had smelled charring food, knocked on his door and when she had gotten no answer, quickly called the fire department.

This was an accident waiting to repeat itself. The writing was not just on the wall, it was on the staircase and on the walls and on the windows. You couldn’t cook with sterno. It took nearly an hour just to boil water for a cup of coffee, a single cup. But Sterno was too expensive to cook with even if they could use it. Something had to be done, and done pronto. All of Premjit’s tenants were on social security or disability, which meant a fixed income with little leeway to increase their payments to the Utility Company when there was a rate increase. This had been instituted a month before, for the second year in a row. Worse, the City had not been forthcoming this year with additional energy assistance. Oh, City officials claimed that private businesses and charities would step forward to help instead, that tenants needed only to look for help and they would easily find it elsewhere. But looking and finding help to pay for heat and lighting were too very different things.

Prem knew what the City did not. His tenants – well, they were not his, not really, yet he felt that they were truly in his charge, and were his concern in a way that his father did not – could not negotiate the tortuous ins and outs of getting private energy assistance. They were on disability for a reason after all, weren’t they? And for many of the tenants, disability entailed some measure of mental impairment in addition to a physical problem, if mental illness or intellectual impairment was not in fact the entirety of the problem.

Yes, Prem thought, Beatrice Bean – called Bay-a-tree-chay by those who had known her in New York City, but called Beanie by her real friends – Beanie, the spindly, towering former madam –turned-Cleaning-Coordinator, her thick poofed hair the color of old bones, even at 84 probably could help some of the others. But she was elderly and somewhat frail. She could not be expected to lead the entire Building 22 to private sector energy independence.

Then there was Stashu, Prem’s 70-something tenant. He was a resourceful survivor who would get heat and lights somehow if ever he lost them, which Prem doubted would  happen. Stashu  did not go without the basic necessities, having known deprivation in his youth that was almost literally unspeakable..

Building 22 had twelve Units and Prem estimated that as many as five could now be without utilities. Who knew how many would go “off grid” in the coming months? It was only October now, the first official month of “cold” weather according to City calculations, but temperatures still rose into the 70°s sometimes. What would the tenants do for heat in December when it sank below freezing in the darkest month of the year?

Premjit, though he was of Indian extraction, had never visited his father’s homeland, and had no close acquaintance with that extreme poverty. He had not been “hardened to the banalities of hardship” as his father liked to explain it. Far from it. Instead, as if in opposition to his father’s tough stance, Prem’s feelings had only grown more and more tender towards the tenants that the Landlord so oppressed. Which is why when his father refused to fix things like the doorjamb, which was more than merely cracked, he saw now, but broken clear through and held together only by the several coats of paint that disguised the imperfection, he felt not only impelled to repair things, but he also felt rage at The Way Things Are.

Prem loved his father, and he understood  completely how the Landlord’s upbringing in India had affected him in such a way as to harden him against the very people he ought to have treated with compassion, seeing them as privileged compared to those begging on the streets in his native land. But Premjit was not his father’s son, not in the traditional sense of those words. And the United States for all her flaws, was his home, and the poverty of the tenants was what he was familiar with, and pained by. Whether relative or not, he cared if they went hungry or were cold or had to use candles to see in the dark.

The worst of the worst case scenarios, which hadn’t happened yet in Prem’s memory, but which his father perennially threatened them with, was Eviction for Non-Payment of Rent. Disability status all but guaranteed a government subsidy that made paying rent possible for these tenants. But if ever the subsidy were withdrawn, if the Government in it is infinite wisdom and kindness were ever to renege on its agreement t care minimally for its disabled population (whatever you thought if the policy of disabling so many people, so young) the tenants would be out on the streets.

Homeless. The word struck fear into any tenant’s heart. To a one this was their greatest source of terror and vicariously Premjit’s as well. So far, no one had been evicted since Prem had become aware even vaguely of Building 22 in his consciousness, as a young boy living in a large white-washed stucco house in the suburbs, five miles away. That, despite the Landlord’s threats, so few had ever been evicted was testimony to the stability of the disability payment and to a subsidy systems that all but guaranteed rents were paid and paid on time.

Even Hope and Feder, the most unstable of the disabled in Building 22, paid their rent more or less on time every month. In fact, Hope managed to pay even when she was in the mental hospital. If she had to, she made sure that Feder brought her checkbook to the nurses station and  she wrote out her payment there, handing it to him to deliver to the Landlord well before the 10th of the month. Prem made a mental note to check on Hope and Feder, hoping that their apartments were not among those that had lost their heat and lighting. His two favorite tenants had enough  to struggle with, without having to deal with these additional privations!

Having calculated the cost of fixing the door frame and preparing  an under-the-door notice for all tenants in his head about not using portable gas stoves in Building 22, along with directions to neighborhood soup kitchens and inexpensive area restaurants where tenants who needed to could dine on the cheap until their heat and lighting situation was resolved. Prem made his way along the first floor hallway. Even as he walked, which was not that quickly or that quietly in his hard -soled shoes – he made noise because unlike his silent shoed father, gliding about the building late at night – he wanted Tenants to hear him and come out to join him, talk with him, share their problems, concerns, grievances. Or just to tell him anything they wanted to. He noted all the bulbs that had burned out or were dimming. He would replace them on his next walk-through.

Four floors with three units on each floor and a roof garden that Prem had put in a few years after taking over the Tenants care, Building 22 had always had an elevator, indeed it was supposed by law to have an elevator, being a building designated for the elderly and the disabled…Once upon  a time, Premjit’s father had put his foot down on the elevator situation, when the inspectors’ insisted that not only could  his perfectly respectable Schindler not be upgraded it had to be replaced by an Otis.

“Otis Schmotis” groused the Landlord. And he added some other choice words. But since he spoke in Hindi, Prem neither understood them nor could repeat them later on, though he understood the feeling tone behind them and “grokked” – understood instantly in that profound deep way—that the tenants not only would not be getting any state of the art “inferior Otis.” But neither would their beloved Schindler be getting repaired into serviceable employment again. Not if Pere Mukherjee had anything to say about it.

This hardness of his father’s heart shocked him into a new awareness. At the time, in 1989, Prem had been only 23 and not long out of college. He had had notions of applying to graduate school, maybe medical school, and becoming a professional, a doctor. But all those ideas had been as vague as dishes seen under the murky haze of dirty dishwater.

When the elevator situation in Building 22 swam into his consciouness, it was not lazily like a school of darting minnows on a sweet sunny summers day, but like a great white shark whose feeding grounds have been encroached upon: with ferocious gaping maw and sharp teeth, ready to swallow him whole.

He might have shied away, taken one look at Building 22 and the Tenants dire situations and said to himself: “I’m too young for this. It is not my fault. I didn’t ask to be put in the middle of this.” He could have turned his head and turned away, saying, “This isn’t a situation I am responsible for. I want nothing to do with it.” He was, after all, a very young man with a promising and full life ahead of him. He might have become a major player in a major profession. He might have gone far.

Luckily for Building 22 and its tenants Premjit did not see all this, or did not care. He saw only one thing: injustice and the fact that he could do something about it. It drove him to make a decision that day that changed, well, it changed only one small thing. Only a speck in the universe was really altered. But this speck was really the thing itself writ small, but he discovered it was the thing itself writ large too, like a fractal. Fractals! So much of nature as Premjit had read recently followed fractal geometries – sunflowers, nautilus shells, coastlines, mountain ranges, trees. Nature was all about the mathematics of roughness rather than algebra’s smooth perfections. With fractals, you needed only to change one input, one speck, and you changed everything. He was beginning to think this was true about people too.

————————————————

That is only part of chapter one. I have many more pp written, but i am off to North Carolina now to visit my brother and write. so I will add more in later days, perhaps from later chapters. We will see.

Art, Writing

Art and Novel Writing

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paint, pencil, ink, a little of everything in this one.
paint, pencil, ink, a little of everything in this one.
Salmon Painted House on Main Street in Wethersfield Trading Card…Copic Markers
Tree Of LIfe with quote from Proverbs
Tree of Life
Tree of LIfe Tin box
Tree of LIfe (tin box)
Tree of LIfe (oval tin box)
Tree of Life with quote from proverbs on side
Tree of LIfe
Tree of Life
Frida Kahlo Eyeglass case
Frida Kahlo Eyeglasses Case
Blue-eyed Eyeglasses Case
Blue-eyed Eyeglasses Case
Purple Glasses Case
Purple Glasses Case

 

Several years ago, someone told me something that paralyzed me for years…She said, You can’t write fiction. Period. Oh, she granted that I could write poetry and creative NON-fiction yadda yadda yadda, but she, I expect, wanted me to stop writing fiction for some reason, I dunno why…and so she told me I was NO GOOD at it. Needless to say, being as sensitive a writer as almost all writers are, I took her words to heart, and I believed her. Why? I have no idea. My first writing teacher at the University of Hartford, who had taught writing for years, told a colleague that my short story (at 60 pp)was the best  he had had from any student ever. Along the way other teachers had said similar things. Even my agent for the book DIVIDED MINDS just loved the very same story that this critic decided I could never write fiction because of…

But I didn’t listen to my agent, even though she had gotten my sister and I a contract at St Martins Press and had worked at big-time publishing houses for years. She knew publishable authors, this other person was an independent editor of technical writing, …but you know what? I listened to her strictly because she had something negative to say to me, and I always believe those who want to hurt me…ALWAYS. If someone tells me something good about me, I think they are lying or trying to get something from me. But if they tell me something bad, or hurt my feelings? Well then, they must be being honest and want to help me, surely!

 

Hah!

 

Where I got that crap from I dunno because this person clearly didn’t want to further my development as a writer, she only wanted to crush me. I would never have told anyone to stop writing, EVER.  It kills them inside. Unless they happen to have been raised in such a way that they fight back…I was not. I simply folded and said to myself, “She told me I was no good, that I would never be able to write fiction, so I might as well give up right now.” And I did. For ten years.

 

Then I got an email about NaNoWriMo in my inbox and something inside told me I had to do it. National Novel Writing Month is in November of each year and you are supposed to write approximately 1700words a day (or a little less) to end up with a 50,000 word novel by the end. Of course, that is really only a novella, but the point is to say you did it  in only a month. Truth to tell, I have written and never shown anyone, two novels, of 300,00o words each, one in only three weeks time. Then I rewrote it in nine months, But I felt it wasn’t good enough for public viewing so I never showed it around.

 

Anyhow, the point is, I can write a novel, whether good or bad who is to say, but I know I can do NaNoWriMo and I decided to take back my power from this chick who decided she had the right to tell me what I could and could not do. EFF her. No one can decide for me what I can or cannot write. If I am not “good at it” now, that is not to say I cannot get better. That was her thing. She thought no one could improve by practice! Fool!

 

I will deliver an installment of my novel in a few days. I already have 32 pages. I won’t dump it all on you, but I thought you might like a taste.

 

Cheers!

Art, Dreams

New Dreamrly Journal: Submit your art or writing!

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I just wanted to alert readers to a new journal that Kayla Bowen is starting at Dreamrly. She is asking for submissions up through January 14, 2014, so there is still plenty of time for art and writing of all sorts. See this link. http://dreamrly.com/2013/10/22/collective-dream-arts-journal-call-for-submissions/

Here is what Kayla asks for:

“High-quality visual arts projects (submitted in digital format), poetry, creative nonfiction, comics,short fiction, book reviews, essays, creative dream recordings, etc. by January 14, 2014. Not all submissions will be accepted, but I encourage everyone to submit his/her work.

This is a great opportunity to showcase your creative work – and, once the journal is completed, you’ll have the opportunity to see it in published format and to purchase a copy of the magazine (likely for around $15, but I’ll know for sure as it gets closer to publication).

Email submissions or questions to kayla.themoderndreamer@gmail.com by January 15, 2014.”

Why not submit your best art/ writing samples if you happen do work on the subject of dreaming or dreams? Or try to do something for the journal now. It can’t hurt, and you have a chance at publication online, and maybe even in hard copy!

More to come but for now I just wanted to report that I am doing great. There are clear reasons for this, and they are not what you may think or wish to think. But though it is true that “it is what it is,” whatever is now, needn’t be the same thing tomorrow. Yeah, I know, that’s completely cryptic, but I cannot say any more right now.

I will only say that things are much better today than last week, and a thousand times better than the week before. Which is what matters. That things are looking up and that I am looking up and outward at the world, not curled up, shriveled up and looking only inward.

More later.

Health, Writing

Wagblog Nominated for the Liebster Award – Wow!

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Note that this is a two part posting. First half is my Q and A part of the Nomination, and tomorrow’s will concern the nominees that I select for the Liebster Award. (I see no other way to do it, as I have already spent four hours on this and it is midnight now).

The Liebster Award is given to up and coming bloggers who have less than 200 followers. So, what is a Liebster?  The meaning: Liebster is German and means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. Isn’t that sweet? Blogging is about building a community and it’s a great way to connect with other bloggers and help spread the word about newer bloggers/blogs.

Here are the rules for receiving this award:
1. Each person must post 11 things about themselves. 

2. Answer the questions that the tagger set for you

First half is done here. Second half of the award will be done tomorrow in the post then.

plus create 11 questions for the people you’ve tagged to answer.
3. Choose 11 people and link them in your post.
4. Go to their page and tell them.
5. No tag backs!

FIrst things first.

11 Things about me.

1) I am a twin, most likely identical, though  there are some questions about it. I guess that has to be said first, though I am pretty certain it is not first and foremost on my twin sister’s mind much these days. In fact, I am pretty certain  that she cannot stand having me in the world.

2) I have never been able to work a full-time job.

3) I recently taught myself to use my left hand for a lot of things, including using scissors.  I write exclusively left handed, though I would be naturally right-handed.

4) There have been four miracles in my life, field botany, poetry, Zyprexa (an anti-schizophrenia drug) and art.  Each miracle involved my mind more than my body and each completely changed my life for the better in ways I could never have anticipated.

5) My idea of a great meal would be to forage for berries and greens and wapato tubers during day and prepare and cook up what I gathered that evening…

6) I love eating vegetables and fruits. I love healthy foods, like quinoa and flax meal, and amaranth and yes, brussel sprouts and jerusalem artichokes.

7) I am teaching myself Italian. Come stai? Sto abbastanza bene.

8)  Tuletko ouiman? (If I remember the spelling correctly, that should mean something close to “Do you want to go swimming?” in Finnish…but I am reaching into deep down memory banks because  I learned that when I was 16 and spending the summer with a Finnish family in Helsinki. That and “kitoksia palmin” or thank you very much, are the sum total of all the Finnish I remember from that summer of 1968.

9) I quit smoking two weeks ago. Blimey!

10) I like new shoes, though I never buy them.

11)  Generosity, kindness and honesty are my core values.

11 questions for the nominees:

1. What food do you eat that people around you find extremely weird and/or disgusting?

Sorry, I hate to be boring, but I don’t regularly eat much that is weird or disgusting, except maybe brussel sprouts. I love those….Yes, okay, I have eaten grasshoppers.  I even made a youtube video of that. 

2. Why do you choose to blog?

I was first asked to blog at schizophrenia.com. and I would still be there writing the original Wagblog except that they experienced a most unfortunate server crash which made the site go down for more than a year, devastating all their blogs. Wagblog was their first, and for many months the only one, so I had a great deal of traffic in the early 2000s – and to my knowledge, while the site is back up and running the blogs remain still only archives of their former selves.

I waited about 6 months, hoping that I could return to my schizophrenia.com “homebase” but no word ever came from the webmaster, so I decided to start Wagblog elsewhere, that is, here at WordPress.

I know that’s only a partial answer. I could have chosen not to blog at any point even after they asked me to do so, and especially after that devastating server crash, but I have always, always been a writer, paid or unpaid, and it never occurred to me to quit just because I had no sponsor. I have never needed outside motivation to write. I write because things just need to get written down. Period.

3. Where do you get your inspiration for your posts?

Hmmm. Inspiration is a tricky word. I believe that if you need something as insubstantial as inspiration to trigger your writing or any other art, you are going to be on shaky ground and had better rely on something else for your bread and butter, better choose a different career. Not that I am anything like a career writer, or a professional journalist, I have no career or profession at all. But I do know that I can and could write on demand, mostly because I have practiced it. If I want to write on a subject, if I am asked to write on a subject, I know how to approach it and all things being equal, I can and will do an okay, and even a bang-up job most of the time.

That being said, I do pick and choose what I want to write about in my own blog, and I don’t write all the time or even regularly, mostly because I am too busy with my art projects. OTOH, I have plenty I could say and plenty to talk about. So I would never be at a loss for things to write. I guess it just feels like a weird question, The entire world is out there so how could there ever be a dearth of subjects to be “inspired by”?

As William Blake wrote in Auguries of Innocence:

To see a world in a grain of sand,
And a heaven in a wild flower,
Hold infinity in the palm of your hand,
And eternity in an hour.

That’s the key, that’s the mindset one must get into. Then everything is a source of inspiration, and you never again need to worry where the next blog post inspiration will come from because everything will inspire.

4. What was your favorite subject in school?

School? Yeowch, that was, what? 40+ years ago now…I can scarcely remember what I gave a damn about in school. In high school I was good in history, mostly because the teachers understood never to call on me, but to let me decide when I wanted to volunteer a comment or question. When thus permitted to choose, I would come out with something worthy of being said…I could not be badgered into speaking. In all other classes if called on, I would be mute, but the history teachers hit on the right solution, and so we got on okay. I did not know how much I would love ecology and botany at the time. Not until college. But I wish I had learned field botany in high school. I wish we had been introduced to natural history and ecology in my day. It wasn’t a subject of as much interest in the 60s..  Rachel Carson’s “Silent Spring” had come out, yes, and other books, but there were so many social ills and protests going on then that “eco – anything” was just one movement of many that needed attention. Plus, I was already getting ill and unable to attend to anything beyond my own little world. Eventually my own little world did include field botany and ecology, mind you, it just didn’t include much of the rest of the world in addition.

In med school, by the way, my favorite subject was probably hematology, but that was because it was a little like field botany and natural history, using my visual skills to identify blood on slides.

5. If you had a million dollars, and could NOT use it for charity, what would you buy?

Ah, what a lovely question to have to ponder…I would buy, I would would buy…I know exactly what I would buy: land somewhere in New England, with a big old house, nothing too fancy but with potential, and turn it into a eco-friendly Wholeway House and Healing Community for me and other recovering (or getting older) so-called “mentally ill” persons who need a permanent home. Ideally, it could be built into the side of a hill so as to take advantage of natural geothermal heating and cooling properties, or a would love to do that…and be as green as humanly possible.

6. Biggest pet peeve? You really shouldn’t ask me because I will only irritate people by admitting that “my biggest pet peeve is when” 1) people who should know better say things like, “I should have went” instead of “I should have gone” 2)  “I think I will lay down on the bed” instead of  “I think I will LIE down on the bed.” Oh, you know I am SUCH a language snob!!!!! Beat me, beat me, beat me with that wet noodle! 8p

But you know I cannot help it, I really get peevey when people say, 3) “I would have been rich too, if I would have had your luck…” instead of “I would have been rich too, if I had had your luck!” You know, it is only a matter of knowing the proper use of conditionals. But we don’t teach conditionals any more in this country, the US at any rate. I don’t know about England, but proper grammar seems to be a problem here – at least to my ears. No one cares any longer, maybe no one understands that there are rules in the first place.

Lordy, Lordy, where are the English (Language) Teachers of yesteryear?

7. Are you one of those people who keeps focused and organized, or are you one of those that keeps open and a bit messy?

Here are a few photos of my apartment, which should be answer enough.

8. One word to describe your blog. (I almost wrote “yourself” instead of “blog” but remembered that is the most cliche question EVER and that I absolutely HATE it!)

Enduring (I cannot think of the word, the one word I want to say to mean, “Not temporary” but one that has lasted…I started the first Wagblog in 2003, at schizophrenia.com and here it is, still going strong ten years later at WordPress.

9. First book you ever read (or remember reading)?

Black Beauty…I had no idea what it was about, and was disappointed when I found out it concerned a horse. Read it through to the end purely out of duty and a sense of competition with Los Bender, who had told me only that she could not put it down. She was an “equinomaniac” so to speak, so I should have anticipated the subject but having never read an entire book before then, I didn’t know that one could write nearly 300 pages about a single horse . (It is possible that I misremember, that this was not my very first book per se. But at any rate. it is the first book I recall being disappointed by, and that stuck in mind more strongly apparently than whatever the very first book was.)

10. Do you blog only when you want to, or are there times when you feel you need to post something to keep a routine?

I confess I do literally nothing by routine. I do not even eat on a routine or at regularly scheduled hours. Sigh. Oh, yeah, I do see my psychiatrist at set times, because she keeps a regular schedule of appointments, and I cannot exactly subject her to my sort of whimsical lifestyle, but otherwise I cannot think of a single thing that I do on a regular, literally routine basis, the same time every day, on my own by choice.

11. What is your real job? (Yes, the answer can be blogging, Mom or Dad, nothing, etc. No judgement, just curious)

No real job, alas. Not for pay since I suppose that’s what you mean by “job” is what do you do for a living…? I have been considered and designated officially “disabled” by ther federal government since 1980,  I believe. Since that time, I have been in and out of hospitals, halfway  houses and lousy apartments…until and even after, I landed here in this “safe” elderly, disabled HUD-subsidized housing complex. Very nicely kept up, 250 people or more live here. Community living in a way, though I keep to myself. And while I am not hugely unhappy here (I just used a figure of speech called a litote, if anyone cares) I do not like it, and want to move out someday if I can, before I am really too old to be able to…And I want to be UN-disabled before it is too late.

Truth is, I was always too ill to work, all my life until I became an artist five years ago by a stroke of happy accident. But now that I am able to do art I think I could actually earn some income from it, and in that sense earn my way and a living by hook or by crook, and get off some of these programs, if only I had a chance. It is just that so many people are worried that I would lose my actual living, housing situation and be out on the streets if I left here and couldn’t earn enough…As am I, as am i. I am too old to fend for myself as a homeless person. I never did have any savvy even when I was homeless. Luckily, I was always rescued and hospitalized by those who knew the street was no place for me…I was not someone who would have survived there, or would ever have preferred the street to the hospital…That said, I have had it with hospitals in CT and the abuse heaped on me here. And I do not want to be disabled any longer. I want to make it on my own. And regarding my last twenty or so years or however much time that may perhaps be granted to me, I would love to know that I  would have some freedom to use the time as I chose. That’s why, purely selfishly, if I had that Mythical Million I would buy a big house on land in New England, preferably Massachusetts or Vermont where there is universal health care already set up in a liberal state, and create a Wholeway House and Healing Community.

Blog

100,000 hits…Thank you!

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I saw that the counter was reaching 100,000 late on Sunday, but it wasn’t until after Memorial Day that i had a chance to check again and see for myself that, wow! Gee whiz, Thanks! I’ve actually had more than 100,000 visits to my blog. That impressed me – for all of about three seconds. Then i checked my stats and reality’s cold wet towel smacked me in the face. Not that i hadn’t been aware of it, but here’s the thing, and whether it is a problem or not i don’t really know: my blog is supposed to be about schizophrenia and mental illness or at the very least about art and poetry and therapy. However, one day i wrote a WordPress Daily Post challenge – trying to get into Freshly Pressed – for the uptick in traffic that might bring, nothing more. It did not succeed in that mission, but it did bring me by and in itself a whole slew of new visitors. In fact, each and every day i have many more visits and searches for my blog post from that one day, that one post, in specific, than i do for the entire rest of my blogs combined, by far!

On any given day the breakdown could go like this, percentage wise, 90% for that single post, 10% of the searches and visits for all other posts. Strangest of all, it was a very atypical post, having nothing to do with any of my usual topics but about technology. Weird, in the extreme. Now, mind you, i never mind any visits to my blog, all readers are good. And in this case i believe the post has been helpful to a lot of people. But if they searched for the terms they did, they did not find me with any particular interest in the subjects i usually write about, and may not be inclined to return for more.

Or perhaps i am wrong. You never know, do you? After all, MI strikes every family in one fashion or another, and we deal with it in varied ways, some adequately, some not so, and often some very badly. It is just possible that someone landing here, via a search for that DIY posting, actually took a look around, liked what he or she read, and learned something helpful. I would like to think so at any rate.

And, in any event, you, whoever you are, are reading these words now so you did find me, somehow, via whatever search terms or deliberate whim of fate or fancy brought you here. Maybe you will come back to read some more of my words, see a painting or drawing or sculpture you like. In 2014 i may be legally able to sell them, and perhaps you will like that. Whatever is the case, dear reader, thank you for spending the time here long enough to read this post. If you feel like it, click the like button to show me you’ve been here. It is always, always hugely appreciated.

Muchas gracias, grazie mille, danke, kitoksia palmin (not sure how to spell that, my Finnish is rusty…) merci beaucoup, and so forth. Thank you, thank you from the bottom, and the top and middle of my heart…and from the rest of me too.

Art, Family, Health, Writing

iPad Art, also Portrait and Poem: In Memoriam Howard M Spiro, MD

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The first three pieces here were done with my finger using the app, Art Set, on an iPad 2. I had never used any digital means to do art before, and in fact had just started drawing a few months before. So when I did the window curtains drawing, it was really among my earliest drawings anyway. The “hand with pencil” was just for fun, because I had nothing else in front of me to draw, and I used my right hand to draw my left, I think, though I could have reversed it. Not sure, as I was doing either one in those days. Now I tend to strictly draw with my right hand and write with my left hand… Anyhow, I must have drawn my feet in flip flops last summer, since it is more sophisticated than the other two and I don’t think I would have been able to do that sort of thing until last year.

The pencil sketch, which I took from a movie of Athol Fugard’s play “Boesman and Lena” (staring Danny Glover and Angela Bassett), I drew off the television, stopping and starting it until I couldn’t bear to not know what was going to happen any longer, and gave up and simply watched the movie…It was a terrific if also very dark play. I watched it twice in a row, one night and then again the next night. Then I even went so far as to look for the text of it, which is apparently difficult to find…I did get a study guide though, which may have the text embedded in it. At any rate I hope so.  Anyhow, I had planned to do other studies from that movie but I got so engrossed in the actual play, that I failed to stop the action long enough to do so. I guess that speaks volumes for how good a playwright Fugard is (was?). In fact, I watched yet another of his plays/movies and even sent for a third, “Tsotsi,” that was unavailable any other way the following night. “Master Harold and the Boys” was incredibly difficult, yes painful, to watch,  and should not have been easy anyway, not for anyone with a light skin in this country and any conscience. We are ALL implicated, we are ALL guilty…

Finally, the picture, at the bottom, is of my father. Oddly, my first title of this post (edited out) called him “my dad”; I usually refer to him as my father, but always, always, always called him Daddy..When I did this portrait  a couple of days ago, it scared me: the eyes began to move and the mouth made sounds, as if he were trying to tell me something, and I was afraid, so terribly afraid he wanted to say that he didn’t want to be “there,” wherever he is…I was so scared in fact that I left the painting room and said I wouldn’t listen to him. But then my cat, Eemie, who died not too long after he did, also came around. Literally, or as literal as a dead cat can be. Visual and audible! I dunno how that can be, because she was NOT a ghost, but a real cat, really Eemie..which only adds to my consternation. Finally I decided to take a teensy bit of Zyprexa to stave off any potential disaster. This is a bad time of year for me, 5-6 months along after “the last time” and after last summer I know I have nowhere I can trust to turn to, no place that is safe for me (Natchaug Hospital is too dangerous, and they wouldn’t even take me back if I needed it, if I even agreed to go should I need to).  I frankly dunno that such a tiny dose of Zyprexa makes any difference, but I had to do something…

Oh, I have a lot to say about Natchaug still, but that would take another post, and a lot of thinking. I just might post it as another open letter to Natchaug’s CMO…Because she is the one to whom I wish to speak, and who really needs to hear what I have to say. But we will see. In the meantime, I want finally to post the poem that I wrote for my father after he died. A lot of people have asked me for it. I read it at the memorial service at the Unitarian Church in Hamden, CT.  Alas, I see that it won’t paste in single spaced lines nor will it preserve the proper large blank spacing where it belongs, so you should know that it ought to look a bit different on the page than it does. The only other words of explanation you might want are these: when Martha, my younger sister, read her own eulogy, her major metaphor was water and the ocean and waves, because our father, was so very fond of swimming, especially the breast stroke, or a weird kind of what seemed to me a modified-dogpaddle-cum-crawl, his head more out of the water than in. We were shocked to discover that water and swimming were the governing metaphors in my poem as well.

(You might not need this information, but in case you do,  Tir Na N’Og is a mythical Irish “Land of Youth.” Island of the Seven Moons is meant to stand for much the same thing…)

This is for you, Dad.

BUOYANT

The dead cross the river, swimming.

Past drowning now,

some crawl,

some leisurely sidestroke,

some float on their backs,

toes pointing toward the sky.

Who knows what lies ahead:

Tír na nÓg, Valhalla,

Island of the Seven Moons?

No one can say for sure

if there’s any shore, far or near.

Some have cracked their teeth

on bitterness, believing

that to die is to lose all.

Others say there is only light

shining on the best of what used to be.

We dream, we dream and wake,

we wake and hope our dreams

mean something,

that the dead know more

than just the river

and that they must swim.

Daddy, keep your head up,

kick your feet, push the water

away.

Happiness, Health, Life, Memory, Mental Health, nature, Reflection, Uncategorized, Writing

Miracles: Four Life Changing Events

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©Jesse Taylor (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons
Okay, so as a friend suggested, maybe there have been five not just four miracles, with the most recent miracle having occurred, and ongoing, about three weeks ago. But more on that later. First, a definition of miracle, so we are all clear on what I mean here.

CS Lewis, a popular Christian writer of the twentieth century and still known for his Narnia Chronicles, wrote that “a miracle is something that comes totally out of the blue…” Now, he meant something extremely unlikely, like a virgin female giving birth to a child. Now, apparently, this has been observed at least once in modern times. If you don’t believe it, and can understand the technical language, you can read the following abstract as proof. Then you can decide whether or not virgin birth still counts as a miracle:

Fertil Steril. 1992 Feb;57(2):346-9 .

Chimerism as the etiology of a 46,XX/46,XY fertile true hermaphrodite.

Source: Department of Obstetrics and Gynecology, Chicago Lying-In Hospital, Illinois.

Abstract

OBJECTIVE: To determine the conceptional events resulting in a 46,XX/46,XY true hermaphrodite and to report the first pregnancy in a 46,XX/46,XY true hermaphrodite with an ovotestis… (see the rest of the abstract at PubMed)

Another thinker, British mathematician John Edensor Littlewood, suggested in what became known as Littlewood’s Law that statistically individuals should expect one-in-a-million events (“miracles”) to happen to them about once a month. By these calculations, seemingly miraculous events are actually commonplace.

And of course there is the dictionary definition of miracle, which is the one commonly accepted by both religious people who believe in miracles, and those who do not believe in their existence, but who do accept the definition of the word.

mir·a·cle/ˈmirikəl/

–A surprising and welcome event that is not explicable by natural or scientific laws and is considered to be of divine origin

OR

–A highly improbable or extraordinary event, development, or accomplishment

I myself would add a third, and relevant definition, or qualifier, which is “if it occurs in an individual person’s life, the event produces changes, beyond any that could have been imagined prior to the miracle, in a positive direction wholly unexpected and therefore regarded as miraculous.” To be cured from a terminal or crippling illness is of course a miracle. But so too to my way of thinking would be remission from a future-destroying addiction or mental compulsion. Needless to say, complete reversal of a severe mental illness would count as a miracle. And I can think of others that might be counted as less effulgent but just as miraculous.

Given those broader categories of miracles, then, I will proceed to tell you of mine. I do not know what the Course on Miracles is all about, nor anything of the Miracle classes offered online. If there are similarities, I dunno what it means, except that we came up with our thoughts completely independently. I have spoken of the following things as miracles for many years now without any familiarly with the C.O.M or any other such program.

So, onward to my First miracle. (Alas, I fear I will have to deal with the Second Miracle and the Third, Fourth and Fifth in following posts as this one is already getting long enough and will be longer by the time I am finished.) The first miracle concerned, as some readers may remember, plants, wild plants, field botany, in short, the wonders of the wild green world. But not just that, no, it was the discovery in myself, utterly unanticipated, of a bizarre and wonderful ability to simply know, almost without any idea how I knew it, any plant I came across. In fact, I must have seen them, if briefly, in some plant book or field guide, but it was truly uncanny, my ability to instantly recognize and categorize whole families and genera and then the species within them just by casually looking at any plant, flower or tree I saw, having but  glanced at a simple sketch or pencil drawing of a plant the night or even a week before seeing it in the wild.

I once wrote about this miracle in my first blog at http://www.schizophrenia.com. Although the essay has a less than happy ending that has nothing to do with miracles, I will reprint the essay in its entirety here. Suffice it to say that the pivotal moment,  the chairotic moment and miracle that surrounds “Prunella,” which I describe early in the piece, changed my life forever.

WILDFLOWERS ON THE ROAD TO DAMASCUS

Thirty years ago, I took the natural history course purely for exercise. I figured, what better way to stay in shape than to get credit for it? At the time, I couldn’t tell a maple from an oak, let alone one old weed from another, and it wouldn’t be easy. But just to keep off the flab would be a benefit in its own right. Since the prospectus promised daily field trips, no mention of love or awe or wonder, the last thing I expected was a miracle.
Showing up for the first day’s trip, I wore old tennis shoes of the thin-canvas Keds variety. I had no idea L.L. Bean’s half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I’d made a huge mistake and it was too late to change my mind — I’d have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting “exercise” than I ever would have with my thighs turning to mush, safe in the college library.

The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we’d gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. “Heal-all. Prunella vulgaris,” she announced sternly and without passion. “Vulgaris means ‘common.’ Learn names of both genus and species. Be forewarned, ‘Heal-all’ by itself will not be an adequate answer on your quizzes.”

She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names we’d been given. I was still at the back, waiting my turn without the least enthusiasm, let alone the anticipation of what, in those days, we called a “mind-blowing” experience.
“Come on, now, don’t be shy. Step up and look for yourself,” Miss G scolded me, pushing at my elbow to propel me closer.

Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when she’d said: “Weeds are only wildflowers growing where they aren’t wanted.”

Prunella, I know now, is no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem – on impulse, I’d reached out to touch it and discovered an amazing fact: the stem wasn’t round! – Heal-all was the single most beautiful thing I’d ever seen. The world went still. There was only me and the flower and the realization I’d fallen in love.

Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I’d been struck by unexpected lightning. I’d been converted. I put away my notebook, knowing I didn’t need to write down a word, knowing I’d never forget “common Prunella” as long as I lived.

There were other miracles in my life after that, but none came close to the thunderbolt that knocked me flat the afternoon I saw, truly saw, that homely little mint for the first time. “Sedges have edges and rushes are round and grasses have nodes where willows abound.” Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less unconsciously, and gold would magically appear.

I went walking in the woods every chance I got and carried Peterson’s guides with me even into town, checking out the most inconspicuous snippets of green that poked through the sidewalk cracks. The first time I came out with a certain plant’s genus and species before Miss G told the class what we were seeing, she looked at me oddly.  I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too entranced, looking at each tree, to keep up the pace.

By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds. It was the trees and wildflowers that stole my heart entire.

At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: “Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class.” End quote. “Failed to share her established expertise“? What was she talking about? Did she think I’d already known everything she taught us? How could she not understand what she’d done for me, introducing me to little Prunella, how I’d learned everything I knew after that moment, not before?

It was the worst evaluation I’d ever gotten, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she’d been called away on a family emergency and would not be returning until the next semester. But I wasn’t returning for the second semester. I was transferring back to my original school.

I caught my ride home, spending four hours crammed into the back of an old Volkswagen bug with two other students, wordless with indignation that replayed and reverberated through my mind. How could she think such a thing? I couldn’t stop writing a letter of protest in my head as the highway flowed endlessly beneath us.

I did write Miss G, finally, explaining all she’d awoken in me, emphasizing the magic I’d discovered in her class, my new-found joy and amazement. At the end of March I got a reply, but no apology, no hint that she understood she’d misunderstood. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn’t quite remember who I was, that I was just another faceless student writing to her about a natural history course she’d taught perhaps forty times in her long career as a teacher.

Whether she knew who I was or even recognized what she’d done for me mattered little in the end. What did matter was that when I met homely little Prunella, I discovered the whole world in a common weed.

©Pamela Spiro Wagner, 2004

The next posts, or in the following weeks, I hope to cover the other four miracles. If you are interested in them, and I fail to follow through, feel free to “goose” me with a reminder. My mind is a sieve and I rarely remember anything without a string tied to my thumb! 8D

Acceptance, Forgiveness, Poetry, Writing

Poem about Forgiveness,Translated into Chinese

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TO FORGIVE IS

To begin  要寬恕的實是太多

and there is so much to forgive:  頭一樁要算

for one, your parents, one and two,  你父母那麼偶然的一或二次

out of whose dim haphazard coupling  於幽暗中的契合

you sprang forth roaring, indignantly alive. 你呱呱來臨,憤然降世

For this, whatever else followed, 為此, 為這帶來的一切

innocent and guilty, forgive them.  無意也好作孽也罷,寬恕他們.

If it is day, forgive the sun  若是白天,寬恕太陽

its white radiance blinding the eye;  原宥它的奪目光芒

forgive also the moon for dragging the tides,  亦要寬恕月亮帶來的潮汐

for her secrets, her half heart of darkness;原宥它的弔詭.它的暗晦

whatever the season, forgive it its various  管他冬夏秋春.寬恕季節的多端侵擊

assaults—floods, gales, storms  水患,疾風,暴風雪

of ice—and forgive its changing;  原宥它的更替變易

for its vanishing act, stealing what you love  它的掠奪行徑

and what you hate, indifferent,  把你所愛所恨無情的奪去

forgive time; and likewise forgive its fickle  寬恕時間

consort, memory, which fades  同樣地原宥它的變易不忠,連記憶也不放過

the photographs of all you can’t remember;  以至你把擁有的拍照忘得一乾二淨

forgive forgetting, which is chaste  寬恕失憶

and kinder than you know;  它實是忠貞和比你所認知的仁厚得多

forgive your age and the age you were  寬怒年齡

when happiness was afire in your blood  原宥當年的你,那時幸福在血液沸騰

and joy sang hymns in the trees;  喜樂在樹 叢間高唱聖歌

forgive, too, those trees, which have died;  寬恕那些逝去的樹木

and forgive death for taking them,  原宥奪走它們的死亡

inexorable as God, then forgive God  若感上主不仁,則寬恕上主

His terrible grandeur, His unspeakable原宥祂畏人的堂皇和禁說的名字

Name; forgive, too, the poor devil  亦勿忘寬恕那倒霉的撒旦

for a celestial fall no worse than your own.  他那屬天的失足並不比你的過犯糟糕

When you have forgiven whatever is of earth,  當你把地上天上水裡

of sky, of water, whatever is named,  有名的無名的

whatever remains nameless,  通通寬恕了

forgive, finally, your own sorry self,  最後切記寬恕

clothed in temporary flesh  那包裝在短暫肉體內

the breath and blood of you  血氣正在消亡的

already dying.  悔疚的你

Dying, forgiven, now you begin.  垂死,被寬恕的你,現在要重新開始.

 

 

By Pamela Spiro Wagner, “Divided Minds” 胡思亂想

Chinese Recreation/Translation by Kenneth Leung Sep 3rd 2012, Labour Day Scarborough,  Ontario

 

—————————————–

I received the email below very recently, explaining the poem above. The only thing missing is the translation of the title, which segues on purpose directly into the first line, and so it too is essential. I hope that Jackie’s father might one day provide that title line. Nevertheless, I am thrilled that anyone likes the poem enough to translate it. Thank you so very much, Kenneth Leung. And thank you Jackie, for sharing it with me and allowing me to share it here.

“Hi Pamela,

“I recently picked up your book “Divided Minds” and I couldn’t put it down.  Thank you for sharing your story with the world.  I’m an Occupational Therapist working in community mental health on an ACT team, so I interact regularly with people with schizophrenia.  Your story allowed me to see how difficult it is to first accept a diagnosis of schizophrenia, and then the difficulties of adhering to treatment.  I especially love your poem on forgiveness and shared it with my dad, who translated it into Chinese.  I thought you might be interested in posting it on your blog so Chinese readers can enjoy it.

“Blessings,

“Jackie Leung”

Writing

Think Before You Press Send!

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Do you really want to press that Send button?

“Woe is money,” I once wrote to someone in a nearly somnolent state, before my handwriting drizzled down slant into a puddle of Bic blots. Now, you could say such a thought was  brilliant, not the dreamtalk of a narcoleptic letter-writer. But narcoleptic I am, and I learned over the years not to trust my sleepy brain to spew brilliance when I am not fully alert.

However, once email came along, maintaining such discipline became more difficult. As an author, a blogger and formerly an inveterate letter-writer, I correspond easily and with many people. But night-owling and narcolepsy go down about as well as swallowing a piece of hair; many is the time I have carelessly pressed “Send” and out went, well, nonsense instead of carefully conceived coherency.

I’ve had too many computers and lost too many of those emails to quote them directly, but here is an example that should give you pause: “We had been in the next room when suddenly the woman I sat next to…Where is it? Too much snow having to get out of the No, no not me, not me! Godawful smell the bumper rubber, the, the, oh it’s Manny, from TV, the foxes. Ha ha, I’m joking with the mostest hostess… [Coming to] where was I?”

Anger is another reason I’ve learned not to press Send. I recently responded to emails from my family with some thoughtless expletives that were ill-chosen and unnecessary. Since my father estranged himself from me for 35 years before reconciling seven years before his recent death, I know how feuds can become a family tradition and might have ignited another. No need to oxygenate any flickerings. As the slogan goes: Anger is like holding a hot coal in your mouth…Think about it. Better to scribble that anger, and those expletives, by hand in a journal…It’s good exercise and burns the fire of that energy and will hurt no one.

Email is a quick axe, a guillotine, but like any honed blade, it can kill. Save any email for forgiveness and understanding. It will make the journey – yes, in packets, but in that miracle of email they will reunite for peacemaking. That is worth years of goodwill with people you love more than you hate, trust me.

But why should you trust me? Because I’m the one who wrote “Woe is money” and dreamtalk or not, it is sort of brilliant after all. Maybe I didn’t send it out, but then, there was no Send button in those days or perhaps I would have. Too bad. It might have gone viral and become an expression of common currency.

Health, Health Care Reform, Hospital, Mental Health, Natchaug Hospital, Seclusion and Restraints, Trauma, Uncategorized

Open Letter to Deborah W., MD, Chief Medical Officer, of N Hospital

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It has been a week since my discharge from the Adult Unit at N Hospital. After a week of recuperation and stabilization at home I feel compelled to write you via the open forum of a letter on this blog. It may or may not get your attention directly but I feel certain it will be read by someone on the N staff. Perhaps that way it will eventually reach your eyes. If not, so be it.

Our encounter on Monday the 27th of August was extremely brief and not particularly noteworthy. While I have much to say that never got said then, I owe you nothing, and by the same token, expect nothing from you either. That said, to any of my readers who want to understand the intent: I write partly in my defense against what I feel were gross misunderstandings (leading to unnecessary trauma), and partly to record publicly – on record as it were – what really happened over the last 4-6 weeks.

Please, Dr W, or any other reader: Do not dismiss this letter out of hand as the peevish complaints of a disgruntled but troublesome patient. I understand how you might be tempted to do so, especially because you — or at least Dr P and L.H. APRN – claimed in their infinite wisdom to be able to detect signs of an Axis II Borderline Personality disorder (despite the concomitant presence of an Axis I psychosis ). I know that labelling me “borderline” was always just another way to dismiss me and my concerns as “mere,” that is to say as meaningless or manipulative, the “mere” attention-seeking of a manipulative PITA*.

Nevertheless, it ought to have been obvious, it ought to have been needless to say — but clearly was not — that no one could possibly know what my baseline personality was like from the past four weeks at N nor in fact from any of my past four stays there. What was clear to many early on, including me, was that this hospital stay at N abounded not in norms but in extremes, from start to finish, extremes I might add both on my part and on the part of hospital staff as well.

My friends and family know that I am not generally someone who has screaming fits or throws things or strips naked and parades around in public, all modesty thrown to the wind. So too, N staff: So far as I knew or had seen since 2010, they rarely became physical with patients  and not once in all the times I had been there had physical contact devolved into anything even resembling a fight or violence. Instead, kindness, compassion and empathy were the primary tools. The best staff were as slow to lose their tempers or act on negative emotions as a live gecko was to do a cancan under the noonday desert sun.

I knew those things, and until August I believed it automatically made N a superior place, a sanctuary immune to the sorts of failings I’d found in so many other hospitals.  That was why I insisted on N this time even though it meant waiting two and a half days at W Hospital Emergency Room, never moving off the gurney in the barren cubicle I was placed in, monitored by a camera not so subtly hidden in the large TV screen. I knew of no other hospital where I could be safe, both from myself under the influence of command hallucinations, and just as important, from any staff impulses towards the use of violence to achieve control or discipline.

How could I have known that from the first morning after I arrived, staff behavior was to be stunningly “un-N-like,” as erratic and extreme as my own would turn out to be. My entire stay was in fact characterized by physical assaults by staff, punishment and trauma that began the moment I woke up that first morning.  I responded poorly to this, as anyone might, by regressing into more and more primitive behaviors. But how did “you,” that is to say, the N staff, respond to me? Not by taking a step back and seeing how things could change for the better. No, instead, you, they decided to blame the victim, to say, “She’s misbehaving, she’s ‘doing these things on purpose,’ she is volatile, unpleasant and emotionally unstable…” Et Voila! There I was, diagnosed, improperly but officially with “Borderline Personality Disorder!”

As many of my readers know, I have written extensively here, at wordpress.com, Wagblog, about psychiatric units and hospitals and have until now always held N in the highest esteem. N was always the gold standard, the touchstone against which all other  hospitals in the state were measured. I believed that N had the right ideas, the right philosophy about patient care, hired the right people and trained them properly. I trusted that the hospital understood the critical importance of trauma-informed treatment. Ever since my 1st hospitalization at N in December 2010 -January 2011, when S. H. was director of nursing, I felt I’d found a truly safe place, an asylum in the best sense of the word, where troubled patients would never be brutalized by staff more bent on coercion and a lust for power than compassionate care.

I have been hospitalized at N four times now. The first three times bore out these high expectations, but this last time was unmitigated disaster, revealing how much things have changed, and how, under the auspices of the wrong leaders even N has been willing to permit a few “bad eggs” to damage patients with impunity, rather than take an honest look at burned out employees – including those at the highest levels, RNs and psychiatrists included –keeping them tenured out of a misplaced loyalty, refusing either to re-educate them or to remove them from direct patient contact.

There were three separate instances of physical violence to which I was subjected  between July 31 and August 27th . The very first morning after I had been admitted and placed on one to one for safety, I remember I sleepily turned over in bed and scrunched down again to catch a little more sleep when the person sitting with me suddenly insisted that I place my hands outside the covers where she could see them. This was a strange request, since they had been under the covers all night, right up until that second. Dumbfounded, and freezing cold, I resisted and ignored her, fairly certain that she would not make a federal case of the request once I fell asleep. Instead, she repeated herself, louder and louder. She actually approached the bed and tried to bully me verbally into putting my hands above the bedclothes, telling me that being on constant observation required that my hands be visible at all times. This was news to me. Never in my experience at N had anyone required such a thing. I continued to resist, though any impulse to sleep had left me by then. By this point, it was strictly on principle.

Well, she was intent on winning the battle and instead of negotiating a solution called in reinforcements in the persons of two male mental health workers. Unable to verbally force me to uncover myself, they initiated physical contact, attempting to pry my blanketed fingers away from the blanket in which I had wrapped myself. The female stood aside, but continued to threaten to deprive me of all coverings if I did not comply with her order. The tussle went on. I vehemently kicked at them whenever they laid hands on me, though I spoke not a word the entire time. At last, they gave in and left me alone. I never found out why. Perhaps they saw the brutality they were inflicting on me. Or perhaps they were called off. I do not know. All I know is that that particular rule was never again inflicted on me.

After they left, and a new sitter arrived, I lay in bed, breathing hard and feeling bitterly betrayed. What the F just happened? Dismayed and disappointed, I could scarcely believe I was really at N and not at the torture chamber in the south eastern part of the state again. The consequences of this betrayal left me physically and psychologically speechless. What had happened to “my” N? Try though I might to let myself talk, I remained mute for 8 days.

I won’t go into the long and involved story of the second assault, except to say  that it involved  poor judgment on the part of my social worker and evening nurse. OTOH, an assertion of power by another nurse assigned to me nearly twenty four hours later was overkill and an act of punishment and revenge. She can deny it left, right and silly, and maybe her RN superiors believe it, especially because they have a stake in it. But I know contempt and the smile of sweet revenge when I see it, and I knew the enjoyment in her smile that Wednesday. Assault #2, which involved a rather violent physical altercation and restraint, nevertheless had a bearing on assault #3. What follows is the story of that third assault on my person. In places I quote almost verbatim from my journal entries, which I wrote at the time. When I am not quoting, I assure you that the account is very similar to the journal’s “horse’s mouth” and merely states the same things I wrote there, but with better words and fewer punctuation marks.

I do not remember how it started. I suspect I had been screaming or yelling about something. All I know is that the RN Supervisor for the afternoon, a woman I will called D came into my room after my upset and just stood there. At one point in her obdurate silence, she accused me of an unprovoked attack on it the nurse, K, who had taken revenge on me the day before. She called K  one of her “ best nurses.” Incensed at this I assured her she didn’t know the whole situation. When she said she knew enough, I told her to leave my room.

“I’m staying right here,” she said giving me a baleful look. I pointed out that I already had a 1: 1 and did not need a 2nd person in the room. She only continued glaring at me.

“Get out,” I screamed, “get out of here!”

No response. No reaction, except for a slight recoil from the loudness of my voice.

I threatened her then. I admit it and I am not proud of it. I threatened her. I took up a box of crayons and looked as if to hit her. Everyone cried out, “No, no, P!” And I put it down. But I continued to cry out, “Leave! Leave! Leave me alone!” She only stood her ground and stared.

That’s when I lost it. I picked up a chair and threatened to throw it at her. This is what she’d been waiting for. She could’ve laughed or made a calming gesture or simply backed away and let the mental health workers gently disarm me and all would’ve been well. But no, D liked to escalate rather than de-escalate, so she yelled out, “Escort her to the quiet room!” Before I could offer to walk there myself, Brad and someone else picked me up by the armpits not even allowing me to walk and dragged me.  Because they didn’t even ask me if I would walk freely, under my own steam, I fought them, twining my legs around  theirs as if to try and trip them.  Then to add insult to injury they dragged the blue therapy chair out of the room instead of leaving it there for me to rock in and calm myself. Now, inside the tiny, now empty windowless cell, despite the bright mural painted on the walls, panic rose in me. I looked around, remembering how S H had assured me that no one would ever leave me alone in there unless I wanted them too. I begged D for someone to stay in there with me. S the mental health worker saw the panic and offered to, but D was furious and ordered her out.

“No, she is to stay in here alone!” She made everyone leave, and following them out, she slammed the door shut behind her.

I was horrified. All the memories of locked seclusion returned to me in an avalanche of terror. In my mind, memory told me it would make no difference if I went to the door to beg to be let out, or for a blanket or someone to talk to. Experience, all my long experience had taught me: there was to be no mercy no help nothing would change no one would respond no help nothing no matter what I did. I was and would be abandoned to my punishment until–well–until I had no idea how long it would last. No one told me a thing. Utterly terrified, instead of banging on the door and begging for release, I backed into the farthest corner. I wanted to meld with the wall, shrink back into the wall board as far away from the room as I could get. A howl climbed my throat. I tried to hold it back but I could not. When I screamed, I screamed not to anyone or for anyone but out of sheer mortal terror, the sort of terror that any animal must feels when its leg is smashed in a trap and knows his life is coming to an end. Screaming brought no relief though. Screaming brought nothing, it certainly brought no one into the room to help me. There was only thing I could think of that would that bring relief and that was to relieve myself. So I did, in the only way I could: I stripped off all my clothing and peed a huge puddle of urine on the floor. I had to. I do not know why. Removing my underwear I found inside the crotch a forbidden pencil. I’d not been allowed writing utensils for eight long days and just that afternoon I had used this pencil to sketch my first portrait since I’d been there. I wrapped the pencil in my clothing, knowing that if someone saw it they would confiscate it again.

Too late. A commotion behind the door and they were upon me, all of them, wrestling my naked body to the floor and prying the wad of clothing from me, smashing my glasses in the process so that one lens came out of the frame.  In the melee, someone grabbed my medical bracelet right off my flailing wrist. They pinned me down. I knew what they had in mind. IM meds. But no one had offered me oral medication. “I want oral meds. I’ll take oral meds you can’t inject me, you haven’t even offered me oral meds.” I asked for Zyprexa. Not Haldol or Ativan but Zyprexa, the PRN I had on order.

They refused to get Dr. T, who signed off on the seclusion without ever seeing me, to change the emergency meds — which I didn’t really need but which were going to be ordered anyway, as a mater of course — to Zyprexa despite my psychiatric advance directive distinctly requesting no benzodiazepines of any sort. However, fearing any further confrontation, I swallowed the pills. Everyone got up and left except for the nurse supervisor. I stood up and surveyed the room. Urine ran everywhere.

“How can I stay here?” I asked her. “There’s pee all over the place.”

She surveyed the wet pads and floor. “Deal with it,” she said, and walked out, locking the door behind her again.

I was spent. There was nothing left in me to fight or scream or object. I simply lay down on the mat, amid the puddles of urine and curled up in a fetal position. Sleep never came; it was too cold for that. I just lay there, eyes open, my naked back to the window. 10 minutes passed. 15 minutes. I heard the mental health worker at the window ask the supervisor if she could let me out. “She is lying there calmly, I think she’s sleeping.”

“Give her another 10 minutes,” was the reply.

Another ten minutes went by and another.

The mental health worker kept asking if she could let me out. Finally, about an hour later, the door opened and S entered.  I didn’t bother to turn over or look at her. I scarcely raised my head.

“P?”

In a dull voice, I answered the requisite questionnaire, as if that were adequate debriefing. Then two other staff members attempted to clothe me in hospital issue johnnies, one over my front, one to cover the back. I allowed them to do this but as soon as they let me go and I was free to proceed out of the erstwhile “Comfort,” now Terror Room, I ripped off the johnnie coat covering my naked backside, and walked half-exposed to my room, deliberate and uncaring. Who gave a fork? What could they do to me now? What could anyone do to me? Fork everyone! They were dead to me. I was dead to them. It was over. It was over. I was dead meat. Just meat. I didn’t give a fork about anything.

More than any other incident, this one was the last straw. Whatever repercussions I deserved for threatening the RN supervisor that evening, however evil I felt for being the devil, there remained in me enough human pride to resist such treatment, enough to say that even I did not deserve to be treated as harshly as D had treated me. Not only did she deliberately test me, she lost her temper and I was her victim. I have reason to believe that most of the staff members who witnessed what happened that night believed she went too far. Some would actually say so in as many words to me, though others were cagey and feared repercussions should it get back to her.

All I knew was that I’d been treated like an animal. What did that supervisor or anyone else expect in response? Did she really think I would become docile and obedient, chastened, a meek and compliant patient?  Violence begets violence. It always does. From then on I was not the same. I was not better either, no. I grew markedly worse, and worst of all, no one could predict anything about my behavior. No one knew what would happen next, what I would do, when I would lash out or scream or throw things or push someone or even hurt myself…None of those behaviors were “me” or even close to my usual, or baseline, but I reiterate: what do you expect: treat a person like an animal, and you can pretty much count on getting animal behavior as a result.

Dr. W you do not know me. Dr P, for all his discharge summaries and “progress” notes (the pages of writing are all boilerplate, meaningless, and/or second or third hand information for the most part), he doesn’t know a damned thing about me. I tried to let L. H, APRN, know a little, but by the time she was involved in my treatment, you were all so intent on seeing in me this mythical borderline personality, instead of a person who had been acutely and brutally traumatized at your hospital, that it was useless for me to expect anything.  For all L’s  pretence of understanding, she had made up her mind about me before she met me. She was largely deaf and blind to everything I said that did not fit the tidy diagnostic picture: schizo-affective, with a concomitant borderline personality disorder. How convenient that you could chalk all the unit troubles up to my problem, rather than seeing it as something your hospital staff created! Blame the victim, why’ncha, instead of taking responsibility for a number of incredibly poor judgment calls on your own or your staff’s part?

Of course as many people have asked me, why do I care what you or Dr P or L H think? Well, I do not, in fact, give a flying femptogram… Mostly I care about the decent people there — the mental health workers and the nurses who did like me and made it obvious and treated me very well and made it clear they would welcome me back (though I can never return, not now.) About Dr P and LH  and the others I could give a ratzass.  But I do, or did care about N itself, once the gold standard, for me at any rate. It was the one place where I could tell other people, “Go to N – I know people will take care of you there, people will care about you there, that’s where people will treat you well.”

The even bigger tragedy is that if no one is safe from the hospital staff at N, then the likelihood is that no one is safe in any psychiatric unit or hospital in  this state. Let’s face it. Not much progress, perhaps none at all, has been made since the Hartford Courant’s series of articles in 1998 called “Deadly Restraints.” My sense is, in fact, that since Mnanaged Care took over medicine, things are actually a great deal worse…Oh, sure, I was not four-pointed during the past stay at N, no they managed not to become that brutal, so far… but I was physically restrained and manhandled during all three incidents and I have been four-pointed at nearly every other hospital in the state up till 2010. So I would hardly say that that practice has gone by the wayside. In fact, in the  Hospital Emergency Room back in July of this year, they threatened to four-point me just for making a nuisance of myself and being noisy…

So much for not using restraints. As for not using them as punishment? I believe that in every single case when I was subjected to four-point restraints from 1980-2010, they were used as punishment, as a convenience or in revenge… I state this categorically: that not in a single instance were four-point restraints ever truly necessary to keep me safe. They were only used because they were available and the culture on the unit permitted the employment of torture to control and discipline patients. Period.

Seclusion? This practice has only increased in usage so far as I can see. The difference is only that staffs are careful to call such barren quarters the Time-out Room, and are rarely apprised as to the legal definition of either seclusion or restraint. (BTW Time-out is a disciplinary measure used to train children to behave properly…since when did psychiatry decide that patients in adult units ought to be treated like misbehaving children and sent to time-out rooms? If you want to talk about empowering patients and not infantilizing them, you do not in the next sentence tell someone to go to the “time-out room” and stay “until I say you can leave.”).

What you, Dr W et al, think about me in the end is of little consequence. I know I do not have BPD and so do the people around me that matter to me. If I care about anything having to do with N it is not your opinion of me nor your judgment or your diagnosis, I care about N because while it could and should be, it is no longer a place I trust, a place where I can direct other people for safety and compassionate treatment. Because if I am not safe from myself at N, if I am not safe from the staff at N, and I mean by staff, the doctors and nurse supervisors as well as any “rogue” RN  or MHW, then no one is safe at N and no one with mental illness is safe in any psychiatric hospital or unit in the state

That, Dr W, is by far the worst tragedy of all .

___________

*PITA = Pain In The Ass

Abuse, Health, Hospital, Life, Mental Health, Psychiatric Unit, Psychiatry, Schizophrenia, Trauma, Uncategorized

Mental Hospital: Psychiatric “Treatment” and Abuse II (Continued)

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I was admitted last Tuesday night, the 17th of July I believe it was, to the Institute of Living, the psychiatric division of Hartford Hospital in central Connecticut. I do not remember this. The fact that I have amnesia for it and for most of the Wednesday following only occurred to me on Thursday, a day and a half later, when I wondered — the train of thought must have had to do with the seclusion episode that took place Wednesday evening and which I described in yesterday’s blog post — why they had been so violent with me, why they had so quickly secluded and threatened me with restraints in a situation that didn’t come within miles of “requiring” them. Surely, I thought, the staff member who admitted me, whoever that had been, had asked me a critical question, which is on every  admissions questionnaire upon entering a psych unit or hospital these days: have you ever experienced trauma or sexual assault? (or words to that effect). I could not, and still cannot, for the life of my body or soul remember anything asked or answered at that time. There’s little left in my memory beyond a vague “snapshot” of being wheeled into The Institute of Living (hence forward to be called by its nickname The Toot or by its initials, The IOL) and my understanding that I had been transferred out of the ER. Then the memory  goes blank until many hours later. Understanding only as late as Thursday that I had this gap, and pained by the violence dealt me the night before, I went up to my “contact person” and asked about my admission. Could I find out whether this question was ever asked me, and what my answers were?  At first, naturally and as a matter of course, she refused. That was SOP. Refuse, refuse, and refuse.  So as I stood there, earnest in my request, she seemed about to summarily dismiss it as just another bothersome demand from a too-demanding patient already much disliked by all. What did I expect, cooperation? But to my surprise, her misgivings and the flicker of irritation that had crossed her face at first changed to a flattened look of resignation. She agreed to read my answers to the questions to me. But that was all she would do, so don’t go expecting more than that.

As she read from the top, a few memories stirred and woke, but only temporarily.  I fear they soon faded again into the all-white-out of oblivion. Only the trauma memories remain, for they apparently are stronger than thieving Ativan. Can I push myself to remember what her reading my answers back to me recalled to mind? She told me…what? She said that I told the admitting staff member, whom I do not remember a thing about, do not even recall if that person was male or female, doctor or nurse or what…I told that person I was not homicidal, not suicidal, not hearing voices, and that I didn’t need to be in the hospital. Three answers were true, or true enough by then. After having been nearly killed in the ER the people in my head/outside of it, who tell me to do things to myself were not so relentlessly horrible in their demands…so I was indeed no longer suicidal, homicidal or in need of hospitalization. I just wanted to get out of there and go on my upcoming writing-retreat vacation.

As I recall the little I recall now, this nurse, my “contact person” read to herself a lot of the paperwork and relatively little aloud, despite her promises. I kept asking what she had read, and prompting her to read out loud, but she let forth only a few phrases. I still do not know why… though I can guess that pretty bad things are written there about me. That would not surprise me one iota. I do not really care. They will largely be lies or descriptions of that awful scene in the ER from one very biassed point of view. No one will tell MY side of the story, that’s for damn sure. Whatever is said there will be based on what the ER personnel and the guard-thugs did to me, but if my contact person believed them reading them, and never bothered to find out the half of it, then who knows what they all thought about me, or believed…Anyhow, I do not care, because they too were thuggish, professionally and psychologically.

But the big question was yet unanswered. Had I ever in fact been asked about past experience of trauma or sexual assault? Contact Person, whom I won’t name as she was at least marginally decent to me, now seemed interested in this too, having paged through the lengthy document and not found it. She seemed puzzled, said she knew it was a standard question. She started perusing the thing again from the beginning. A minute or two later, she poked a page.

“Ah, here it is. And your answer is blank.”

“So the person just skipped over it. They just skipped it!”

“It appears so. Do you want to answer it now?” She took out her pen.

“Yes, and yes. I have experienced sexual assault three times. And severe trauma due to seclusion and restraints in many hospitals.” I looked at her. She was writing. “Tell me what you wrote.

“Experienced sexual assault. Has issues with seclusion and restraint.”

“NO! I said, it was severe trauma. I have PTSD, ask my doctor. Ask, I dunno, give me a test. I cry just talking about it. My heart rate goes up just thinking about it, even though it happened more than two years ago. It was trauma, and you cannot do it to me again!” She wrote something on the paper but didn’t read it to me. She just clicked her pen off and stood.

“Now you have your answer. I have things to do. Let’s go.” With that, and no discussion of what had taken place on Wednesday night, let alone in the ER, she hurried me out of the side office so she could go back to the nursing station to do some “real work.”

——————————

I suppose there must have been some incidents of relative kindness at the Toot. There must have been exceptions to the Hartford Hospital IOL “coal dust standard.” But only Albert, a tech, stands out. Because they injected me with too much Ativan on Wednesday pm and I was discharged Friday noon, I had very little time between the ER’s monster dose and D3South’s equally large dose of Ativan-it-Away to retain much of anything but what stood out enough to stick, and really stick tight. Their puny kindnesses mostly did not, except for Albert.

On the other hand, the sheer meanness of the staff was astounding. I had a semi-meaningful interaction — though unpleasant  – in all that time with only one individual who was not programmed to speak with me. And even that started out with nastiness, though I admit it was sparked by something that was “my fault,” as you will see.

Friday morning I needed migraine meds and my 8am pills. I went to desk at 7:55 and asked for them. A nurse or tech or someone –I never knew and no one ever bothered to tell me who or what they were — lingering at the desk said that the med nurse somewhere in the back would get them. I wandered off, figuring it would take some time and she would bring them to me, which is what they did at every single place I have ever been. But no, by the time I thought about it again, realizing that she had never brought them, it was 8:45 and people were lined up for their 9:00am meds already. I signaled above them to the nurse at the med window that I had not gotten mine for 8:00am yet. She told me that of course not: I left the med station; why should she go after me? Then she indicated that I should get in line to be next…even though that meant stepping in front of someone else. Okay, so I got in line, and  – oh, I do not remember all that happened except that I became angrier and angrier with her, resenting her attitude. As a consequence, I did everything I could do to irritate her. She poured the meds at the computer, where I couldn’t see them, saying their names softly to herself so I asked to see the packaging. I didn’t trust her not to withhold or add something I didn’t want. Because I had asked for Imitex an hour before I sensed she would not include it. Well, lo and behold: No Imitrex! So I took the pills, but asked her for the Imitrex as well.

Ah, revenge time! “I will get the Imitrex at 9:00 am sharp, when it is due. That is 10 minutes from now. You can come back and wait in line then.” I just stood there, not budging. I would never stoop so low as to impugn a person’s person, but I probably let loose a few curses and most certainly raised my already angry voice a few decibels. Finally, speaking in a calm, respectful voice, a man whose name I learned was Albert came up to me asking in such a polite manner that I even looked him in the eye, to “please just lower your voice” so he could hear me tell him what the problem was.” Well, treated in such a fashion I understood he would wait for me to calm and not get angry back so I was able to take a few breaths and then make him understand what she was doing…He said, with the med nurse standing well within earshot, though I do not think he intended any manipulation, “It’s okay, don’t worry. It’s nearly nine, and I’m sure the med nurse will get your medication for you.” (I was sure of quite the opposite but harrumph! Well, what could that SOB, excuse me, DOS — daughter of a stud (med-nurse) do but give me the Imitrex now?) I might have crowed, but instead, thanks to Albert and in respect for him, I took it without a fuss and thanked him again.

This sort of treatment gives the lie to what so many providers – both individuals and insitutions — say about the goal of “empowering patients.” What bloviated BS! What they really want are not empowered patients but cowering patients, people too scared and drugged up to object or make trouble in the first place and then who continue to cower before the establishment MD’s power structures all the way to the last place.

 

My butt hurts from sitting slouched on a bed all day. I need a break. So I am going to post this and go outside in the cooling darkness of the Litchfield hills and drink the air. Since I have nothing I have to do here but write, I will post tomorrow about that single meaningful encounter I had while imprisoned at The Institute of Living. If I still feel it is worth writing about, which as I think about it, it may not be.

Oh, what the heck: Basically, it concerned an encounter with this female tech, a woman who in passing me in the hallway, the first time she had spoken to me so far as I knew, accused me of moral turpitude (not in those words), made a statement shaming me for my behavior on Friday morning at the medication window. What had I done?  By talking too loudly, I had made “the poor man behind [me]” cover his ears and point at his skull to communicate his displeasure. PLUS, I had made everyone wait a good 30 minutes…I knew the 30 minutes was an exaggeration, so I didn’t even touch that, but the shaming tactic got to me. I went back a few minutes later and said I wanted to speak with her. We went to a couple of lounge chairs in the hall and sat down.

“What precisely did I do that was morally wrong this morning?”

“Do you know you talked so loudly this morning that the poor little man behind you was covering his ears and pointing at his head?”

“So I should have talked more softly, but I do not have eyes in the  back of my head to see him. I could not know he was communicating by pointing at his head. It is not morally wrong not to have eyes in the back of your head, nor is it morally wrong to speak in a loud voice.”

She reiterated the case of “the poor little man behind you pointing at his head.” But I continued to press her on what was morally wrong because I didn’t have eyes to see behind me. Finally she granted that I could not help not seeing him and that it wasn’t actually a morally wrong thing to do, to yell or talk too loudly. At this point I said to her, nearly in tears because just having a calm conversation had taken such effort on my part, “Be careful what you say to someone on this unit you know nothing about. Words have power and you should use that power with care. You have NO idea how those words you spoke affected me, no possible idea…”

She gave me an intent look, almost a fearful one, as if afraid that — well, no, I don’t think she gave a damn whether or not she caused me any emotional harm. She no doubt despised me along with the rest of the nursing staff. But perhaps she suddenly appreciated how even her words were important and powerful, and carried weight and could do some good but could also do just as much psychological damage and maybe more sometimes than the loud voice that damaged mostly ear drums.

 

 

 

Brain, Empathy, Health, Health Care Reform, Memory, Mental Illness, Poetry, Psychiatric Unit, Psychiatry, Seclusion and Restraints, Trauma

Useless Psychiatric Mediation and a Poem

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(Before I write this blog entry, I want to send this message:To certain people from Middlesex Hospital who read this and are following developments in my case against you please be aware that I know who you are and I am watching you. You do not and will not get away with what you did nor with what you are doing now.)

That said, let me tell all the others of you out there what happened at the mediation- meeting-that- wasn’t, this morning at Middlesex Hospital.

As you know, I have been wanting this meeting for a long time, but when I got there not only did I discover that they were playing the game of “Oh, I had no idea that you wanted a mediation meeting, I didn’t know what this meeting was about at all…” but that the CEO had actually cancelled on last Friday the people that he had arranged to meet with me.  So in fact the only people who came were administrators, not anyone who had treated or dealt with me on the unit itself, except the doctor who saw me for the last 11 days of my 6 week stay. He may have been the director of the unit, but he was hardly the main doctor I saw, despite what he claimed.

Anyhow, the meeting was extremely  — well, first of all, it was largely a waste of time, because NOTHING was said of interest to me. Except that Dr Grillo, the unit director, after I read what follows, actually had the gall to claim that restraints were  entirely appropriate…He said nothing whatsoever about what they did to me. OTOH, I can understand why. After all, he had already been told that we were writing the Department of Justice and the Joint Commission regarding his unit, so he must have felt supremely threatened. Naturally he could not have admitted wrong- doing. Not that any god, excuse me, doctor that I have ever met has ever admitted doing anything wrong or ever apologized. God forbid, a doctor apologize! No, that would be too hard and too demeaning for them to ever do.  Better that they go along and permit torture and abuse than that they admit that there was wrong done to a patient on their watch, much less that they personally even made so small a thing as a leetle eensy meestake…

Well, I know what they did to me and I know it was abusive and wrong, and so far, except for Dr Grillo and that lot, NO ONE I have ever met outside of Middlesex Hospital has ever ever agreed with him and said, Yes, in fact the use of restraints was proper and necessary, and they were right to do what they did to you.

So take that, you watchers from MH. I hope you tremble in your boots for torturing me so. Because you never apologized, and wouldn’t’ meet with me to talk about it, it serves you right whatever happens now. I came down there today , and it took all the courage I   could summon up to do so. I came down there, after two nights without sleep, just to meet with you and talk about what happened on April 28, 2012. But you couldn’t be bothered to deal with me, and so now you will deal with the DOJ and JCAHO. And too bad for you if that means that heads roll and some of you lose your gd jobs. I do not care any more. I tried, I tried to reconcile and talk with you about it, but you didn’t have the courage to do so, you wouldn’t deal with me, and so now you can deal with the powerful ones, and not me. Now I don’t give a damn what happens to you.

Meanwhile, this is what I was going to read to all of you, and what I did read to the hospital CEO and the administrative personnel, and what the advocates are sending along with the letter to the DOJ and JCAHO.

STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

Although I have a longer statement, I first want to read you a poem that I wrote about my experience here. It is only half a page long, but like any decent poem, it says a great deal in few words. The expression “Long pig” means a human being intended for eating.

TO MY PROTECTORS

I came to you fractured,

splintered to syllables,

all-fired to incinerate

the house of my body

where the devil lived.

But I was not nice,

not nice, not nice, no,

I was not nice enough

for balm and kindness,

or to win back my art

or my writing supplies,

so I upended a trashcan

on top of my head

and uniforms nailed

me, naked X, to a bed.

It gouged my brain.

Freight train. Tank.

Two years: still blank.

Nurses, doctors,

thieves: you knew, you

knew. You made of me

pulled pork, long pig

X-posed and pinioned,

not quite a specimen

for your knew the subject

and your objective  :

your satisfaction showed

as you struggled to hide

your smiles.

I was admitted to North-7 in extremis: confused, psychotic, and traumatized. Exquisitely vulnerable, my sole comforts were doing art and writing. These were also my strengths. Yet instead of using these to help me, you consistently employed them against me–withholding supplies as punishment when you felt I was not behaving nicely and worse, using loss of them as a stick when they were most needed. The first time this happened was on April 9th, nine days after I had been admitted. I had been using glue sticks freely to make a large collage for several days. Angry at me for yelling at her, one of the senior nurses whom I won’t name, decided to withhold them. She would no longer give them to me until, as she put it, “the team puts them on your treatment plan.” This frankly felt like such gratuitous punishment, and so unnecessary, not to mention counterproductive, that I could see nothing in it but petty revenge. Nevertheless, not myself and not in control, I screamed, “Fuck you!” and ran to my room. Luckily, Christobelle from OT, the one person who consistently treated me not only with understanding and kindness but with respect and dignity as well, came in shortly thereafter carrying two gluesticks. I do not know whether she knew of these new restrictions or not, but I was grateful.

On another later occasion, I had been using my soft felt-tipped markers, which my old treatment plan permitted me until 10pm. That treatment plan had been changed, however, and the new, more relaxed one said nothing about markers, so it seemed to me that I was now allowed markers in my room just like anyone else. However, around 10pm, someone called Bob came in demanding them. He threatened that if he had to ask, quote, “a 3rd time you’re in for trouble.” My pulse ratcheted upward. Uh, oh, uh oh. Why was he doing this? Was he deliberately baiting me, trying to pick a fight? He could so easily have discussed my understanding of the new plan. It wouldn’t have been so hard to figure out a compromise. After all, they were just Crayolas, not carbon steel knives. I was sick of the power plays, and sick of the way staff just wanted to control me instead of talk to me and of how they insisted on domination at all costs. Well, this time I was not going to give up without a fight, and it seemed that a fight was what Bob was itching for. Instead of negotiation and attempting to find a compromise, Bob reached out to grab me, which I construed as an assault. I screeched, “Don’t touch me!” Someone else grabbed me from behind. I kicked and punched. Someone told me later it was Ruth I kicked. In my journal I wrote this: “she was furious enough to lie and scream that I caused an uproar ‘every single night and I’m sick to death of it!’…”

I fought them then, clawing and screaming, trying in vain to resist, my body flailing as the chart itself notes, my heart hammering. Why were they doing this to me over a few markers?! I wanted to scream. Why were they being such bullies? They were hurting me! But of course there were several of them against the one of me and they were much stronger than I at 102 pounds so naturally they overpowered me. They literally dragged me to the so-called time-out room and dumped me on the floor, ordering me to calm down. Then they closed the door. No they didn’t lock it, but they kept me from leaving by leaning against the door.

You know, I don’t know why you bothered calling it a time-out room. No one could use it at will. And when you put me there, I didn’t ask to go – I was forcibly dragged there — and I didn’t want to stay: you kept me there by force so it was the same thing as seclusion, literally and legally. Time-outs have to be voluntary, you have to be able to come and go if and when you want to. When it is forced, it is by definition a seclusion. Period. That cold barren room was not a time-out room. Who did you think you were you kidding?

And listen, did it never occur to you that it was always your treatment of me that generated my behavior, yes, the negative behaviors as well as when I was in control? You could have found out what was going on by talking with me. Instead, you decided to dismiss everything I said and did as manipulative and acting out so you didn’t need to listen to me. Perhaps you thought this disregard was kept secret from me, but I knew it   at the time and it caused me enormous anguish. All I wanted was to be treated like a human being. All I wanted was to talk to someone and be listened to. But all you did was make assumptions. You never checked them out with me to find out if they were true and they almost never were. Assume makes an ass out of U and me…But mostly it does terrible damage when the assumptions are wrong. I was so afraid, I was so terribly afraid, but you never knew the half of it. All you did was to dehumanize me, ignore my pain and order me to shut up and be quiet. I know I was difficult for you to quote unquote “handle.” Hell, I was difficult for ME to handle. But I do not have a personality disorder. Ask anyone who knows me. Ask my family. Ask the psychiatrist who saw me from 2000 until 2009, ask the psychiatrist I see now. But you decided that you could detect borderline traits (somehow transmogrified into the full-blown disorder upon discharge…) despite the presence of an active psychosis. By decreeing that I had such a disorder, you put me in an utterly untenable position, because then you had a justification, so you thought, for taking nothing I said at face value. To me it felt like nothing less than soul murder and I will tell you that this particular form of soul murder makes a person want to die. It makes a person want to bash their brains out in public just to get someone to acknowledge them and take them seriously.

April 28.. April 28, 2010. You wrote in my chart your interpretations of my behavior that day and of what happened. Yes, your nursing and physician notes were supposed to be objective but dispassionate as they may have attempted to sound, all observation is but interpretation. I repeat: All observation is interpretation. Now I want you to know what happened from my point of view. (I know that some of you have been snooping around, reading my blog just as you did during my hospital stay, but you will have to sit through this anyway…)

At around 7:30pm, so the evening nurse reported in my chart, I “walked into the dayroom” and if one can believe this, without any provocation I “began shoving and turning over chairs. I then, quote, “picked up the patient trash can and put it over my head.” Staff ordered me to what they called the “time-out room.” Nursing notes report that I refused and, I quote, “went to bed instead.” Because I had not followed her direct order, the nurse wrote that “security was called and patient required security to carry her to time-out room as she refused to move or walk.” No, I simply lay on my bed, mute, trembling with terror when the phalanx of guards roared in.

Despite my lack of resistance, the guards physically took hold of me – unconcerned apparently with my known history of rape and of recent trauma — and took me from my bed where I was calming myself in the least restrictive environment. They physically carried me to the seclusion room and together with staff they forcibly prevented me from leaving.

This is what I wrote in my journal: “It was (freezing in that room) and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back… this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote this: “Patient refused to stay in time-out room… Patient attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm.”

At this point both records state that I stripped off all my clothing. But the official records record only that fact, and that I then “was changed into hospital garb” and that I immediately stripped these off too. In my journal I wrote something else in addition that is rather revealing: Left alone in that room, I decided, and I quote, “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me.” So once again I took them off and got up and tried to push through the woman barring the [temporarily] unlocked door. She called for reinforcements and they came. In fact, they came en masse.

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because I needed someone to talk to. That was all I wanted, just someone to talk to. One guard seemed taken aback. All these personnel hours wasted when all I wanted was a half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.”

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.””

Why was it so dangerous when I was on one to one and had an observer at all times? It made no sense. And why wouldn’t they just give me a sweatshirt and socks then? Or turn up the heat. How did they expect me to sleep, I was too cold!”

But this last categorical refusal was just too much. No, no blanket, no nothing. Just shut up and freeze. “That was it, I’d had enough! I dashed at them head-first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me.”

As one guard shoved me onto my stomach on the hard floor, his knee in my back, he muttered in my ear, “You bite me, I’ll teach you a lesson you won’t forget!” Then he mashed my cheek hard against the dirty linoleum till I was breathing dust.

I knew he was capable of hurting me, they all were. I also knew that people can die during prone restraint as the Hartford Courant and others have documented. Adrenalin flooded me, my pulse threatened to rocket out of control but I knew I had to calm down. Very deliberately, I forced myself to lie still, barely breathing.

Fortunately, when I stopped resisting, they released me and let me sit up. Someone gave me a sheet to cover me. The room cleared, except for a tech who was on 1:1 with me. She apparently was now allowed to talk with me, and for this I was supremely grateful. We conversed calmly. The door to the seclusion room had been left open, a big relief.

However, people were still talking in low voices outside the door. I heard someone trot down the hall, heard the open-and-shut of a cabinet door. I asked my 1:1 what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”

“A bed?” I said. That gave me a bad feeling…Then I understood what was going on.  “Uh, uh. They can’t put me in restraints, I am calm and it is illegal to restrain someone who is not a danger to self or others. You know that.” I repeated it loudly, loud enough so the other staff could hear me. I began to tremble, but forced myself to remain as composed as I could, mustering all the arguments I could against the use of restraints. A nurse entered the room then and asked me to come down the hall. Did I need an escort or could I walk there by myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm.” I was barely able to speak. I felt dizzy and short of breath but I tried desperately not to show it because I was afraid that if she knew how terrified and upset I was that it would actually give them justification. Nevertheless, I followed her to the empty room — my heart went cold, I could feel urine leak — I felt like “dead man walking” when I saw that in fact they had fastened four-point restraints to the bed.

I entered the room filled with staff members and guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one contradicted me. The nurse in charge ordered me to lie down on the bed. I protested. She threatened that if I didn’t “they would assist me.” I was terrified of another assault. In fact I was so terrified just of the physiological consequences of fear itself – the flood of adrenalin and painful tachycardia — that I made myself get it over with. I lay down on the bed. Gritting my teeth, I said nothing even when they pushed aside most of the sheet that covered me.

I meant to remain silent. I meant to remain completely still in order to shame them. But when they pulled my wrists right over the edges of the bed, shackling them painfully below the level of the mattress, and spread- eagled my ankles to the corners of the bed, I broke that silence and objected — vociferously. I was appalled at their barbarity but my protests did nothing. I fell silent and let them do what they wanted. Finally satisfied, they trooped out, some of them actually smiling, leaving me alone in the room. I fell asleep quickly, a narcoleptic stress reaction. Nevertheless, no one returned for an hour. They extracted a pledge of obedience from me before taking off the shackles.

“When they released me,” I wrote in my journal, “my back hurt so badly I could barely walk and…my scapula muscles felt as if they had been separated. ‘I plan to sue you for doing this to me.’ I said as calmly as I could as I left the room. Nobody reacted.”  As I wrote in my journal the next morning, “I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder… the pain went clear through to the scapula.”

That was not the end of it. Once you treat a human being in such a fashion, all bets are off as to how she behaves from then on. I no longer cared what you did to me after that. When you threatened me with restraints a few days later, I dared you to do it. I egged you on and so you did. My capitulation showed subsequently when I stripped naked multiple times, even voided on the seclusion room floor and smeared urine on the walls. You reduced me to an animal. I hope you were pleased with the results.

From what I witnessed, many of you — on the nursing staff at any rate– took no pleasure in your jobs. You apparently didn’t want to work in psychiatry, and wanted nothing more than peace and quiet and an easy day’s work. When one of you actually screamed at me, after that staff assault occasioned because I didn’t hand in my crayons on time, that you were “sick and tired” of listening to me every night, that was stupid and nonsensical. How can any hospitalized psychiatric patient be expected to worry about what makes a nurse comfortable?  By rights it should be the other way around.

I think what it comes down to at the North-7 secure unit is that you expected patients to meet your needs and make you happy and you tried to force us to. In my case, and in at least one other patient’s that I witnessed, you even tried to physically assault us into doing so. But what a farce. Patients in the outer unit warned me to get out of there; they told my friends they were worried staff would hurt me. They were right. By the time I was discharged, I had almost no memory of what had happened over the previous 6 weeks. It is only in the last couple of months that anything has returned to me. Yet every single day since my discharge, when I least expect it, something triggers a thought or bodily memory of my stay here and instantaneously my heart starts hammering, I get dizzy because I can’t breathe, and I tremble and cry just thinking about it because I’m right back in that seclusion room and April 28th is happening all over again…

Now, I don’t expect to recognize any of you. How could I? I still don’t remember much except those episodes I wrote about, and some little snippets here and there. I am told that some of you will be nursing staff on N-7 and some my so-called treatment team. Well, if you were my treatment team and you just turned a blind eye to what went on, for that you are just as guilty as if you accomplished the acts yourselves. Of course, the worst of it mostly took place in the evenings, in relative secrecy and when few were around. But if you knew it was happening nonetheless and If you approved, well, then, I have nothing to say except shame on all of you.

I felt helpless and utterly alone. Frightened beyond belief. No one defended me, no one helped me or came to my rescue. No one except Christobelle Payne. Christobelle treated me with compassion and kindness. She always made sure that I had gluestix and magazines for my artwork, even when your every impulse was to withhold them as punishment. I cannot tell her how grateful I was and how grateful I remain to her for treating me so humanely. I have never forgotten the oasis of kindness she provided in your North-7 desert.

Apparently no one else on the unit understood how to behave humanely or to treat patients with respect, or no one else gave a damn.

Punishment is the nature of what you did to me. You lost your tempers and you punished me.  The result was that you permanently damaged and traumatized me. I believe you did what you did absolutely on purpose and I believe you did not care what the consequences would be to me.

Some of you deserve to lose your jobs because of it and because of what I’d venture to guess you have been doing for a long time to other patients.  Perhaps you will. You all need to be thoroughly retrained, if that is even possible. Certainly the secure side of the unit needs to be completely reorganized and re-staffed. But that is not my job. You’ll find out what will happen after the Department of Justice and the Joint Commission do their thing.

I hope you remember me and what you did to me for a very long time. Unfortunately, I know I may never be able to forget you. I wish I could, believe me, I wish I could.