Sometimes it Takes a Village …to avoid the Hospital

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

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.