It turns out that our child is definitely on the Spectrum. It turns out that she was this whole time, which is fascinating and embarrassing- her best friend figured this out before we did. Her best friend is also on the Spectrum, I should mention. Her best friend has something called PDA, a Spectrum condition, like Aspergers. Her best friend's family, who are our best friends here in the UK, are very familiar with the behavior that qualifies a person as having PDA.
"She doesn't do things when you tell her to, does she?" my daughter's best friend's mother, who is my friend, asks me. It seems a strange question: who's child does attend to their commands the first time? Who's kid is like that? I want to hand those parents a certificate of achievement right before I punch them in the neck.
"Well no, but I've never met a kid who will just do things, have you?" I say.
"Um, yes. Not my child (the best friend, remember- the one with the PDA,) but I do watch a lot of children. It 's my job." My friend watches children for money, and she's very good at it: not one of the children in her charge has ever lost a finger. Not one. "Most kids will actually do something you tell them to, after they have a little moan about it."
"Oh" I say. Our daughter will go on and on, she will come up with many if not every excuse to avoid doing something. It's almost reflexive now. When she was younger she would claim that her legs had stopped working to get out of walking half a block. She committed to the lie, showing me her non-working legs and hitting them with her fists and sliding around the floor like a grumpy mermaid.
My friend shifts a bit, showing her discomfort at having to state the next part. It's very British of her, though I can't think of a comfortable way one could say what's next: with a Herald? with back up singers? Via sky-writing? "And she can...I don't know if you've, uh, seen this...she can be somewhat manipulative, can't she?"
,
I'm embarrassed now, but not by my friend: retroactively by my daughter. I remember when she was younger and her father, a US Army reservist (I can't explain how I ended up married to one of those without charts, and this isn't one of those posts,) was deployed for a year. I was a single mother dealing with a very smart girl child who had Sensory Processing Disorder, period. The girlchild plays violin, and sometimes she loves to and sometimes she would rather do anything else, up to and including picking up old cat vomit that our old cat had vomited up days before. But I was determined to get her to practice, I insisted she practice, we were paying for lessons for her because she wanted them so by Dionysus, she would practice...except that she knew I was stressed out from being the single mother of Herself, so she asked me questions about my thoughts and my day and how I felt about what happened at her cousin's house and the terrible news about the Mayor, who was a dick, and what the teacher's union might do about the new contracts, and what I might do if there was a strike, because it would be difficult on one hand- home schooling, coordinating what we should be reading, scheduling with lessons with her other best friend so that we could get some grocery shopping done on a rotating plan- but on the one hand it would be easier, there would be less struggle in the morning because we could get up later and I might be able to let her have the hour and a half she needs to put her clothes on...
"Things like putting her clothes on- that's a big one, right?" said my friend, interrupting my thoughts.
"How did you know I was-?" I said. Once she got old enough to dress herself, getting out of the house in less than two hours was an ambition I had, similar in strength and sheen to the ambition I'd once had to win an Oscar: I was going to do it! Everyone could just watch me- all I need is a stage and a dresser full of fuzzy clothes with the tags carefully pulled out, and maybe a three-hour head start, and I'd do it! The fantasy was almost glamourous...oh shit. "Yeah. And the tags in the clothes, yeah. What else?"
My friend, mother of the best friend of my daughter's, smart mother and all-around great person, said "She'll even scream and freak out and run away, become non-verbal, flail her limbs, punch or hit a person-" She stopped and made the need-I-say-more smile of apology.
When you look up PDA on the Internet and get the full, knowledgeable list of signs for this...condition? Label? Mode of Being? Once you get the list and match it up with your lovely child, and drop your onion-layers of protective rationalization or insecurity or distraction or whatever it is that's kept you from examining the kid's behavior more intimately, you have no choice but to admit it: Your child has PDA, which is on the Spectrum. Your kid has much in common with those children who can't speak, who can't look anyone in the eye, who runs away for no reason. And now everything she does is seen through the Spectrum visor. It's a difficult one to look through- I wouldn't recommend it. But my daughter would.
"I'm definitely PDA. Ooohh, yeah. That is ssssoooo me," the kid says as she's filling out a PDA quiz sent to her by her best friend's mother, my friend. If the child herself is agreeing, what chance is there that it's wrong? Is there a chance that we're on the wrong track, and the girl is just chronically dehydrated? "That's me, Mom. I have Pathological Demand Avoidance." She looks kind of relieved, kind of determined. I ask her how she feels. "Good. It's kind of a relief to know it."
I'm making some fun here (I hope), but I don't wish to make this issue into a joke, big or small. Having a child on the Spectrum isn't fun at all. The demands of the world we live in are a source of constant struggle for those families, a struggle like climbing directly uphill with non-working legs. No wonder those children are grumpy mermaids; no wonder those parents are full of excuses and apologies. I'm new to this, embarrassingly new, but I get it- I've been the parent who gets looks at the playground, and had to apologize profusely as I drag my tantrumming child out of a birthday party, and kept my mouth shut when my girl insisted on leaving the house without brushing her teeth, which is anathema to me. I've felt terrible at the end of each school year, bringing cookies to those administrators who had the most patience with her protracted lie-ins on their cots, praising those teachers who dealt with her whether I thought they were good at it or not.
So, this is the official Casting Call for my new project, called Spectrum!: The Musical. I need about ten kids, ages 8 to 16, to be the Grumpy Mermaids/ Cocooning Forest Creatures to back up my daughter's violin solos. Must be willing to bring their own tagless fleece jumpers and sing songs about...well, about not leaving the house, probably. This show will premier in the Autumn sometime. Or maybe Christmas, or Twelfth Night. Valentine's Day isn't out of the running...I'll get back to you about it, Ok?
Monday, July 18, 2016
Thursday, July 14, 2016
An Hour
This woman, this large woman who wore white clothes that were themselves gigantic, like bedsheets, this woman had trouble sleeping. There were professional theories about why she had chronic insomnia but she believed it was because she wore too much white: it kept her nervous system amped so that she couldn't close her eyes without seeing white superimposed over her closed eyelids, and that was basically just a movie screen to her not-somnambulant mind. Despite herself she would watch the fragments of internal video that her brain projected there, and it was almost never important nor said anything deep. She'd lay there with her eyes closed watching her own kitchen fill up with the groceries she had forgotten that afternoon, or the gluey awkward conversation she'd had with her social worker the week before. It was all stuff from the past, but it was what her brain showed her and she had to watch.
Maybe the white clothes were an attempt at continuity: she wanted to make her internal eye and her external eyes see the same thing. She saw lots of white when she looked at herself in the mirror, which she did a lot and without apology. She was known amoung those who saw to her that she'd do that sort of thing when she was in a mood, which was all the time so why call it being "in a mood"? She'd do that sort of thing and it was called a "mood", because it created the mythology wherein she'd "get better" and then there wouldn't be any more "moods". The woman was a slave, then; or more likely she was an indentured servant to her "moods". Fuck that, she thought. But then she'd do something strange and wondered if the myth might be true and she was just moody rather than permanently altered by her long lack of sleep. The thought would then easily transmute into pictures of signets she'd seen swimming with their gorgeous parents in the nearby river. Those signets were cute, she thought. The change in her mindset was insubstantial, and during the hour when she could reflect on them she would realize that it was scary how boneless her thoughts were, how weak they seemed right before they disappeared and were replaced by cute animal pictures.
The woman was energetic for one thing: News Roundup with the BBC. She didn't know what any of those letters stood for, or where the they were normally found. The nurses would shift around, looking for trouble before it showed up, trying to suss out which stories were going to upset the population. They shouldn't have bothered, thought the woman; though sometimes it worked and everyone would remain placid during the program, so what did she know? She would stare at the screen and absorb it without understanding, just blinking at the screen when it showed some pictures of someone who'd just been maimed riding a new ride at an old amusement park or the sheet-bound prone bodies of ten civilians, killed by explosions during the latest fighting blah blah. She absorbed and paced, flapping her hands and keeping her eyes on the screen. She may have been heavy but all that pacing and flapping meant she had really shapely ankles and wrists. When News Roundup was over the woman would scuff back to her room and lie on her bed, tired through and through, down to the marrow in her bones.
The days went like that, and she didn't remember a distinct time when she was elsewhere, in a home instead of a Home. She had memories of people, and a room with a multi-colored bedspread that she didn't like the look of but recalled was very warm and excellent for cocooning. Her bedspread now was pinkish, sort of off-pink, the same as everyone's. At the place that had the colorful bedspread there was a father- she supposed he was a father- who was very kind and would get her warm washcloths for her head and make phone calls on her behalf; frequently she would overhear him almost-yelling at a person named Lilly:
"What am I supposed to do? Do you have some other plan? Did you figure something out that I didn't- did you make some calls or something? I can't force her to leave the house. Do you have some idea that you just thought of, Lilly, or is this another round of your bullshit?"
She figured out that he wasn't really asking, he was just shouting because he liked it. He would come back fresher and energized from those conversations, offering tea and asking if she'd like to move to the comfortable chair in the living room. The woman had no memory of the living room- it was all about the multicolored bedspread and the mattress beneath it, and the things right around the bed. There was a night stand and a desk. That was as clear as it got. She didn't even remember the transition from that place to her current place, which was fine. She was happy to have a memory of something and have that memory stay with her.
Once, after the BBC Roundup, she didn't feel tired. It was weird. She felt keyed up, if that was the phrase- keyed up or keyed in or something, some analogy that required a key. It was unfamiliar. Nurse Amuje was in the TV room with them.
"Amuje, I'm not sure that was the best course of action," She said.
"What wasn't? Do you need a chair, honey?" Nurse Amuje was standing up for her, offering her seat, which was the best one in the room.
"No, I mean that farmer." Oh, that's what she meant- there'd been some story at the end of the program. "He shouldn't have gone to jail." The farmer man had shot some youth in the back after he'd broken into the farmer's house too many times.
"No, he should not have, I agree with you" said Amuje. She was holding out her hand, reaching for the woman's upper arm to guide her to her bedroom. "The poor man."
"But the poor boy, the poor youth" said the woman, and now she was beyond surprised: she was almost scared of what was going to come out of her mouth next. "The youth was running away. But the farmer shot him, and the boy died. The boy who was already getting out."
Amuje's arm went down and her eyes went up to meet the woman's. Her expression was surprised- they were both astonished in the TV room. The picture of a key entered the woman's mind again, this time entering a big old lock, something in brass."That farmer was scared to death. It was on his property, so..." Amuje trailed off and looked at the woman with some satisfaction, as if she'd said something final. The woman recognized it as the end argument, as far as the Nurse was concerned.
"Don't you think that's unbalanced? To assign blame, full blame, to one or the other side like that? Where were the police, for example? They should have watched the property, made some effort to find out when it was most likely to happen and then be there for the occasion? That would have avoided all kinds of hell for everyone."
"What happened to you? Let me look at your chart" Amuje said behind her- the charts were kept at the reception desk- "hold on!" But the woman was chasing her to the reception desk (chasing was perhaps the wrong word- they were just walking in the same direction, a few yards apart from each other,) trying to get in the salient point: "The farmer guy decided to become a vigilante when the youth ran away from him! He had the moment to think of what to do when the boy turned to vamoose, and he chose 'blow him away'! That's not right, that's why it's a, a- when you look at it like that, it's a complex issue!"
By now Amuje was burning through the pages of the woman's chart, but: nothing. There was nothing to explain how the woman might be behaving differently (mostly the Nurse was looking for medication changes.) Amuje looked up at her with a fearful set of eyes, and the woman stopped talking. They stood there for a moment, feeling awkward, frozen. Amuje cleared her throat.
"You should go rest, honey. You usually rest after the BBC." The Nurse said, keeping her arms at her sides in case there was to be more talking.
But no- no more talking. The woman felt drained all of a sudden: she didn't feel the draining, she just felt drained in less than an instant. She turned to shuffle down to her room, Nurse Amuje at her left and two paces behind her. The episode didn't repeat itself for a month, when there was another story about the farmer: it must have been a slow news day. The BBC took up the slack in their blank minutes by exploring the justice system, and how it was handling the farmer's appeal for a retrial. It wasn't handling it well, it turned out. There was evidence- or no, there was a lack of it- and the judge (who might have been drunk when the request was officially heard) said there would be no retrial. The woman jumped when she heard that as if she'd just received an unexpected electrical shock.
"Ooo-ww-hh!" she exclaimed. Heads turned. Those in the TV room looked at her with various levels of alarm. Nurse Amuje was there, eyes above the newspaper she held spread in front of her body. The Nurse was the most alarmed, though you couldn't tell from the eyes. The woman saw she had attention and launched:
"Don't you think we should band together- and I realize we're inmates here, I know our voices don't register loudly or as distinctly as your average tax payer's, which is saying something since the average taxpayer's voice might as well be the voice of that speck on the flower that Horton is holding up in that kid's book- but don't you think, fellow crazies, that we should make some sort of petition? That farmer isn't getting any kind of justice, he'll just be more dottering and more likely to shoot some retreating person in the back when he gets out of jail. Provided he survives the experience of being jailed, that is. And no common vandal can prepare themselves for an appearing-and-disappearing farmer with PTSD and a trigger finger, no matter how many times they've squatted in other abandoned farmhouses. It serves no one-"
Amuje the Nurse had been mute for this. It was crazy how you thought you knew a person- how you thought you knew a person's behaviour profile- and then they'd up and spout some social commentary right in the TV room. She sat there, holding her newspaper like an idiot (not that anyone else was springing to action) for the woman's monologue. The others were getting agitated, standing or looking or walking up to the woman and then walking away like they would do when they were attracted to something. It was the beginning of a little swarm, Amuje thought. She had to disperse them.
"That's a great idea" Amuje said. She had no idea if it was a great idea or not. "We can do something like that- there's all kinds of, of causes that could use our, your voices. We could have a letter-writing party" she continued.
"Party?" said one of the others. There was a murmur that went around.
"We need to organize this, Amuje- we need more than some crepe-paper party, we need more than some juice in plastic cups and a bunch of form letters, or just one form letter with a bunch of scrawls littering the bottom of the page, unintelligible. We need to get our representative out here- who is our direct representative, the first rung in local government? What's the word for that?" The woman was bright-eyed almost as if she had a fever.
"The Alderman. Not a man but called Alderman," said someone.
"Right, can we get that? Him or her?" The woman asked, looking at Amuje, who was starting to panic. She slid up to the woman and put her practiced grip around the large upper arm she usually gripped- it seemed heavier, more substantive. Her upper arm seemed like it might fight that grip, for once.
Instead, the woman looked at her Nurse, her helper really, and the fight or vigor or whatever it was left her like a light turning off. She regained some of the slackness in her face, and then she began to sway just a bit.
"Can we have him? Or her?" the woman said again. Those who'd been milling around her began backing off, and it was easy to get her to her light-pink-clad bed and easy to let her just sink down onto it. The Nurse smiled as the woman did so. She was relieved. Amuje wasn't clear what was happening to the woman but the unfamiliar is the unfamiliar, and she was nervous on the woman's behalf. When it happened again- this time there was less call to action and more critique, because they'd been showing a televised debate between some MP's in England, and those well-dressed white people calling each other genteel names had given rise to some eloquent calling-out on the woman's part- but when it happened, Amuje realized that the woman was in a pattern. She pulled her down the corridor that time, asking the woman what she'd been thinking. She had meant to scold the woman, to get her to agree that she shouldn't be kicking any hornet's nests, but the answer was...well, it was baffling.
"It's my time to be smart." The woman looked at Amuje, full in the face and breathing deeply from the brisk hallway walking, and told her what was going on.
"It's my time to be smart. I have a limited time, I can be smart but it's a limited time, so I have to strike when it comes. Do you find that you have times of day, certain times, when you can answer the questions of the universe- at least your piece, your visible field of universe- better than others? It's more than a morning person versus night person division, it's that time when you can be most lucid-"
Amuje had stopped listening to the particulars, not least because it was confusing and used more words than was necessary, and just felt them wash over her. She was amazed. The woman was amazing her with her amazing words coming from her amazing, alarming mouth.
"So we'll surmise that you're an afternoon person, because you look like one-"
Amuje cut her off- she had to: "You can't know that. I don't look like anything more than any other thing." She was sure of herself here.
The woman had an answer: "No, no, one can tell by looking at a few other things- the brightness of an eye or the spring in a step, or the anger in a step come to think of it- but there's a way to tell how things are going inside another person's head based on external cues. Are you a morning person or an afternoon person?" and She waited for Amuje to speak this time.
"I am an evening person, you know it because I'm here for the second shift" Amuje said. The Nurse looked shocked at the woman. The woman smiled brightly at Amuje. "I know because that was a smart answer. So, so, so- I have to be smart now when I can. Do you remember the story about the farmer who shot that young man in the back?" When Amuje said she did, the woman jumped in with "and the debate about the right thing to do, the sympathy for an overwhelmed and alone farmer who'd had enough with just anyone coming into his house while he slept or when he was sleeping, which is much worse in my mind because you go to sleep thinking there's a finite amount of people in your own house, that amount being one and that person being yourself, but you wake up with the gentle tinkling of household silver- whatever there was of it, maybe it was just regular flatware- but the tinkling of departing forks. And a shape. There's someone's back. You can shoot or you can watch, and frankly here's where the poor choice came in, yet everyone thinks he was right in pulling that trigger. What it doesn't do is talk about the surrounding issues, societal issues: mental health, and poverty because the young man in question was transient and poor, and-" the woman tapered off. Amuje had just listened- it was difficult not to, it was like watching a flower bloom right in front of you. But the woman stopped. She slackened again. "what was I saying?" she asked the Nurse.
"About society. Some issues that society has. We should be talking about it, you said." Amuje was interested in these things, it seemed. This surprised her. But the woman was looking around at her bedroom, shuffling to her bed and sinking down to mattress level, again. The Nurse tried to prompt her, but it was done. The woman looked at the Nurse from her spot on her bed.
"I can't remember what I was saying. I can't remember what it meant." And she closed her eyes. Amuje saw the eyeballs move under the woman's eyelids, back and forth in REM sleep. It was the wrong stage of sleep but at least it was sleep. The next day the Nurse remembered what the woman had said- about remembering and not remembering- and she brought in a camcorder, one that had been purchased for the home in an effort to document some working condition conflict. The presence of this tool changed management's style of scheduling, and they promised to change the substance of the scheduling "very soon." But the camcorder had done it's job. Amuje had charged the battery after she'd figured out how to do that. She'd been patient, she'd waited as long as it took for the little side light to turn green.
The nurse brought the tool into the room, and there was a change immediately: Those inclined to stand in an emergency stood, those inclined to burrow in an emergency reacted with big eyes peering out from their duvet-nests. The woman didn't notice, though, which suited Amuje. She started the contraption and pointed it at the woman, waiting for her to talk with impatience which was troubling even for her: she'd been so understanding about recharging batteries and outmoded technology; she'd been so willing to wait for it to respond to her, and she couldn't even wait for a disturbed, sleep-famished woman to start spouting philosophy! Or whatever it was. Amuje didn't know what it was the woman wanted, or was trying to communicate, or had stuck in her mind (part of her believed that the woman was trying to shake loose some grit of consciousness, something that wound around her brain when she was lying down, and that all she needed was to lose that tenacious thought and all would be well, the woman would sleep deeply and ultimately leave the home. Amuje thought about how much she'd be rewarded for her perception, but she didn't allow herself to make it more than it was- there would be a pat on the back, a word from management, a request to help others with her superior compassion, but no raise. To really hope for more money would be foolish.) In any case, there was standing or burrowing, and pacing from the woman who billowed her white robe behind her unconsciously. She paced and watched. Amuje kept the camcorder in her hand.
"I was thinking about that farmer. Were you thinking about him? Was anyone?" she started, and Amuje pressed record. "What we could use, really use in this country and probably everywhere, is a village-style collaborative justice. There could be some court that kept the peace in small increments, and the farmer could be confronted by the people who lost the youth that he killed. The parents? A girlfriend or a boyfriend, a best friend? I don't know who'd get to yell at him- a shrink could figure that out, provided you'd find one worth their Ph D's- and they'd need a psychologist there for the session or sessions, and the farmer would cry and the aggrieved could cry, and they could stay there as long as it took to figure out what punishment would be sufficient. You'd have to agree on it. They'd have to agree..." The woman tapered a bit, and Amuje worried there would be full stop. But the woman took a deep breath, indicated by her white robe opening around the chest, and continued: "The communal agreement would be the hardest part. We're so used to recrimination and the fantasy of revenge that actual justice, which requires detachment, is seen as being lenient rather than rational, but nothing will change without communal agreement. As it is now the boy is dead, the aggrieved never talk about it, and the farmer, the old farmer who was already alone, gets chucked into prison for a spell and if he lives he'll go back home ten times as frightened as he was. He'll go back home and acquire a gun, illegally if he must, and he'll be ten times more likely to shoot an intruder. We call that justice, for some reason..." again, the tapering; Amuje allowed the arm holding up the camcorder to slide downward a little. "But justice is something, something, something else- it's something other than that...i don't know what, i know...Amuje...is it ok that I'm calling you that?" said the woman, stopping.
"It's fine" said Amuje.
"I feel like my whole life is there but inaccessible. I had a whole life." the woman was whispering to Amuje now, not that it did any good: everywhere was accessible by sound as well as by sight in this building. The acoustics were state-of-the-art, which made Amuje think of woofers and sub-woofers, and she slid into public laughter, sideways and slowly. (There was just something about the word "woofer.") But the woman- her charge, for god's sake- was looking at the Nurse with some pleading in her eyes that was much different from the pleading looks the staff got from the patients who wanted more opoids. Amuje quieted. She didn't know what the woman wanted her to say, but she got quiet. "I had a whole life." The woman intoned again.
The Nurse answered her the way one answers those sorts of non-questions, but as she might speak to a friend rather than a patient at her work place. "You still have a life. It's a contained life, is all. But it's better than...than the...freedom that's so hard. The huge freedom, I mean. The demand that the Universe demands of everyone, which is to justify the use of the atoms that made you. Here you can concentrate, at least." Amuje said. She wasn't sure she was finished.
The woman looked at her for a number of long seconds, and Amuje used them to think. Did I really tell this troubled woman that her life is better than the outside because she can focus better? Do I really believe that it's better to focus than to be un-institutionalized? She was astonished with herself, and suspicous, because she'd never entertained the idea that the patients lives could be preferable to the outside world. She thought she might just be patronizing her charge. If so, she was embarrassed- Amuje reserved embarrassment for herself, kept it just to the side so she could feel it fully when her placating way was revealed as fact.
The woman settled a bit in her bed, where the Nurse had led (followed, really) her. "I'm tired again. I'm so tired again. I'm so tired and that's where I lose myself- have you ever been in pain for a long time?" she asked. Amuje had to think, but the answer was no. She was surprised, again. Even her two children had been delivered in a tense rush, and she didn't remember those labors as painful, really. They were- they had to be, they were babies- but she remember the labor part of labor rather than the stretching, ripping part. "No" Amuje stated.
"I have. Long...times, long amounts of time...when I hurt. It makes you mean. That's why I'm here- I was mean for too long. But tired is different- you don't get a chance to be mean, you're just an idiot..." the woman slumped downward, resting finally. Her eyes were open, though. "Did you record that?"
Amuje looked at the camcorder, forgotten in her hand: she'd just forgotten it was there, it had just become an extension of her arm, like a second hand. She had lots of footage of her scrub-covered thigh, but there was sound, she thought. "I have sound" she said to the woman. Amuje hoped she had sound.
"Ok. I have to listen to it, tomo..." said the woman, who was asleep by the end of the sentence.
Maybe the white clothes were an attempt at continuity: she wanted to make her internal eye and her external eyes see the same thing. She saw lots of white when she looked at herself in the mirror, which she did a lot and without apology. She was known amoung those who saw to her that she'd do that sort of thing when she was in a mood, which was all the time so why call it being "in a mood"? She'd do that sort of thing and it was called a "mood", because it created the mythology wherein she'd "get better" and then there wouldn't be any more "moods". The woman was a slave, then; or more likely she was an indentured servant to her "moods". Fuck that, she thought. But then she'd do something strange and wondered if the myth might be true and she was just moody rather than permanently altered by her long lack of sleep. The thought would then easily transmute into pictures of signets she'd seen swimming with their gorgeous parents in the nearby river. Those signets were cute, she thought. The change in her mindset was insubstantial, and during the hour when she could reflect on them she would realize that it was scary how boneless her thoughts were, how weak they seemed right before they disappeared and were replaced by cute animal pictures.
The woman was energetic for one thing: News Roundup with the BBC. She didn't know what any of those letters stood for, or where the they were normally found. The nurses would shift around, looking for trouble before it showed up, trying to suss out which stories were going to upset the population. They shouldn't have bothered, thought the woman; though sometimes it worked and everyone would remain placid during the program, so what did she know? She would stare at the screen and absorb it without understanding, just blinking at the screen when it showed some pictures of someone who'd just been maimed riding a new ride at an old amusement park or the sheet-bound prone bodies of ten civilians, killed by explosions during the latest fighting blah blah. She absorbed and paced, flapping her hands and keeping her eyes on the screen. She may have been heavy but all that pacing and flapping meant she had really shapely ankles and wrists. When News Roundup was over the woman would scuff back to her room and lie on her bed, tired through and through, down to the marrow in her bones.
The days went like that, and she didn't remember a distinct time when she was elsewhere, in a home instead of a Home. She had memories of people, and a room with a multi-colored bedspread that she didn't like the look of but recalled was very warm and excellent for cocooning. Her bedspread now was pinkish, sort of off-pink, the same as everyone's. At the place that had the colorful bedspread there was a father- she supposed he was a father- who was very kind and would get her warm washcloths for her head and make phone calls on her behalf; frequently she would overhear him almost-yelling at a person named Lilly:
"What am I supposed to do? Do you have some other plan? Did you figure something out that I didn't- did you make some calls or something? I can't force her to leave the house. Do you have some idea that you just thought of, Lilly, or is this another round of your bullshit?"
She figured out that he wasn't really asking, he was just shouting because he liked it. He would come back fresher and energized from those conversations, offering tea and asking if she'd like to move to the comfortable chair in the living room. The woman had no memory of the living room- it was all about the multicolored bedspread and the mattress beneath it, and the things right around the bed. There was a night stand and a desk. That was as clear as it got. She didn't even remember the transition from that place to her current place, which was fine. She was happy to have a memory of something and have that memory stay with her.
Once, after the BBC Roundup, she didn't feel tired. It was weird. She felt keyed up, if that was the phrase- keyed up or keyed in or something, some analogy that required a key. It was unfamiliar. Nurse Amuje was in the TV room with them.
"Amuje, I'm not sure that was the best course of action," She said.
"What wasn't? Do you need a chair, honey?" Nurse Amuje was standing up for her, offering her seat, which was the best one in the room.
"No, I mean that farmer." Oh, that's what she meant- there'd been some story at the end of the program. "He shouldn't have gone to jail." The farmer man had shot some youth in the back after he'd broken into the farmer's house too many times.
"No, he should not have, I agree with you" said Amuje. She was holding out her hand, reaching for the woman's upper arm to guide her to her bedroom. "The poor man."
"But the poor boy, the poor youth" said the woman, and now she was beyond surprised: she was almost scared of what was going to come out of her mouth next. "The youth was running away. But the farmer shot him, and the boy died. The boy who was already getting out."
Amuje's arm went down and her eyes went up to meet the woman's. Her expression was surprised- they were both astonished in the TV room. The picture of a key entered the woman's mind again, this time entering a big old lock, something in brass."That farmer was scared to death. It was on his property, so..." Amuje trailed off and looked at the woman with some satisfaction, as if she'd said something final. The woman recognized it as the end argument, as far as the Nurse was concerned.
"Don't you think that's unbalanced? To assign blame, full blame, to one or the other side like that? Where were the police, for example? They should have watched the property, made some effort to find out when it was most likely to happen and then be there for the occasion? That would have avoided all kinds of hell for everyone."
"What happened to you? Let me look at your chart" Amuje said behind her- the charts were kept at the reception desk- "hold on!" But the woman was chasing her to the reception desk (chasing was perhaps the wrong word- they were just walking in the same direction, a few yards apart from each other,) trying to get in the salient point: "The farmer guy decided to become a vigilante when the youth ran away from him! He had the moment to think of what to do when the boy turned to vamoose, and he chose 'blow him away'! That's not right, that's why it's a, a- when you look at it like that, it's a complex issue!"
By now Amuje was burning through the pages of the woman's chart, but: nothing. There was nothing to explain how the woman might be behaving differently (mostly the Nurse was looking for medication changes.) Amuje looked up at her with a fearful set of eyes, and the woman stopped talking. They stood there for a moment, feeling awkward, frozen. Amuje cleared her throat.
"You should go rest, honey. You usually rest after the BBC." The Nurse said, keeping her arms at her sides in case there was to be more talking.
But no- no more talking. The woman felt drained all of a sudden: she didn't feel the draining, she just felt drained in less than an instant. She turned to shuffle down to her room, Nurse Amuje at her left and two paces behind her. The episode didn't repeat itself for a month, when there was another story about the farmer: it must have been a slow news day. The BBC took up the slack in their blank minutes by exploring the justice system, and how it was handling the farmer's appeal for a retrial. It wasn't handling it well, it turned out. There was evidence- or no, there was a lack of it- and the judge (who might have been drunk when the request was officially heard) said there would be no retrial. The woman jumped when she heard that as if she'd just received an unexpected electrical shock.
"Ooo-ww-hh!" she exclaimed. Heads turned. Those in the TV room looked at her with various levels of alarm. Nurse Amuje was there, eyes above the newspaper she held spread in front of her body. The Nurse was the most alarmed, though you couldn't tell from the eyes. The woman saw she had attention and launched:
"Don't you think we should band together- and I realize we're inmates here, I know our voices don't register loudly or as distinctly as your average tax payer's, which is saying something since the average taxpayer's voice might as well be the voice of that speck on the flower that Horton is holding up in that kid's book- but don't you think, fellow crazies, that we should make some sort of petition? That farmer isn't getting any kind of justice, he'll just be more dottering and more likely to shoot some retreating person in the back when he gets out of jail. Provided he survives the experience of being jailed, that is. And no common vandal can prepare themselves for an appearing-and-disappearing farmer with PTSD and a trigger finger, no matter how many times they've squatted in other abandoned farmhouses. It serves no one-"
Amuje the Nurse had been mute for this. It was crazy how you thought you knew a person- how you thought you knew a person's behaviour profile- and then they'd up and spout some social commentary right in the TV room. She sat there, holding her newspaper like an idiot (not that anyone else was springing to action) for the woman's monologue. The others were getting agitated, standing or looking or walking up to the woman and then walking away like they would do when they were attracted to something. It was the beginning of a little swarm, Amuje thought. She had to disperse them.
"That's a great idea" Amuje said. She had no idea if it was a great idea or not. "We can do something like that- there's all kinds of, of causes that could use our, your voices. We could have a letter-writing party" she continued.
"Party?" said one of the others. There was a murmur that went around.
"We need to organize this, Amuje- we need more than some crepe-paper party, we need more than some juice in plastic cups and a bunch of form letters, or just one form letter with a bunch of scrawls littering the bottom of the page, unintelligible. We need to get our representative out here- who is our direct representative, the first rung in local government? What's the word for that?" The woman was bright-eyed almost as if she had a fever.
"The Alderman. Not a man but called Alderman," said someone.
"Right, can we get that? Him or her?" The woman asked, looking at Amuje, who was starting to panic. She slid up to the woman and put her practiced grip around the large upper arm she usually gripped- it seemed heavier, more substantive. Her upper arm seemed like it might fight that grip, for once.
Instead, the woman looked at her Nurse, her helper really, and the fight or vigor or whatever it was left her like a light turning off. She regained some of the slackness in her face, and then she began to sway just a bit.
"Can we have him? Or her?" the woman said again. Those who'd been milling around her began backing off, and it was easy to get her to her light-pink-clad bed and easy to let her just sink down onto it. The Nurse smiled as the woman did so. She was relieved. Amuje wasn't clear what was happening to the woman but the unfamiliar is the unfamiliar, and she was nervous on the woman's behalf. When it happened again- this time there was less call to action and more critique, because they'd been showing a televised debate between some MP's in England, and those well-dressed white people calling each other genteel names had given rise to some eloquent calling-out on the woman's part- but when it happened, Amuje realized that the woman was in a pattern. She pulled her down the corridor that time, asking the woman what she'd been thinking. She had meant to scold the woman, to get her to agree that she shouldn't be kicking any hornet's nests, but the answer was...well, it was baffling.
"It's my time to be smart." The woman looked at Amuje, full in the face and breathing deeply from the brisk hallway walking, and told her what was going on.
"It's my time to be smart. I have a limited time, I can be smart but it's a limited time, so I have to strike when it comes. Do you find that you have times of day, certain times, when you can answer the questions of the universe- at least your piece, your visible field of universe- better than others? It's more than a morning person versus night person division, it's that time when you can be most lucid-"
Amuje had stopped listening to the particulars, not least because it was confusing and used more words than was necessary, and just felt them wash over her. She was amazed. The woman was amazing her with her amazing words coming from her amazing, alarming mouth.
"So we'll surmise that you're an afternoon person, because you look like one-"
Amuje cut her off- she had to: "You can't know that. I don't look like anything more than any other thing." She was sure of herself here.
The woman had an answer: "No, no, one can tell by looking at a few other things- the brightness of an eye or the spring in a step, or the anger in a step come to think of it- but there's a way to tell how things are going inside another person's head based on external cues. Are you a morning person or an afternoon person?" and She waited for Amuje to speak this time.
"I am an evening person, you know it because I'm here for the second shift" Amuje said. The Nurse looked shocked at the woman. The woman smiled brightly at Amuje. "I know because that was a smart answer. So, so, so- I have to be smart now when I can. Do you remember the story about the farmer who shot that young man in the back?" When Amuje said she did, the woman jumped in with "and the debate about the right thing to do, the sympathy for an overwhelmed and alone farmer who'd had enough with just anyone coming into his house while he slept or when he was sleeping, which is much worse in my mind because you go to sleep thinking there's a finite amount of people in your own house, that amount being one and that person being yourself, but you wake up with the gentle tinkling of household silver- whatever there was of it, maybe it was just regular flatware- but the tinkling of departing forks. And a shape. There's someone's back. You can shoot or you can watch, and frankly here's where the poor choice came in, yet everyone thinks he was right in pulling that trigger. What it doesn't do is talk about the surrounding issues, societal issues: mental health, and poverty because the young man in question was transient and poor, and-" the woman tapered off. Amuje had just listened- it was difficult not to, it was like watching a flower bloom right in front of you. But the woman stopped. She slackened again. "what was I saying?" she asked the Nurse.
"About society. Some issues that society has. We should be talking about it, you said." Amuje was interested in these things, it seemed. This surprised her. But the woman was looking around at her bedroom, shuffling to her bed and sinking down to mattress level, again. The Nurse tried to prompt her, but it was done. The woman looked at the Nurse from her spot on her bed.
"I can't remember what I was saying. I can't remember what it meant." And she closed her eyes. Amuje saw the eyeballs move under the woman's eyelids, back and forth in REM sleep. It was the wrong stage of sleep but at least it was sleep. The next day the Nurse remembered what the woman had said- about remembering and not remembering- and she brought in a camcorder, one that had been purchased for the home in an effort to document some working condition conflict. The presence of this tool changed management's style of scheduling, and they promised to change the substance of the scheduling "very soon." But the camcorder had done it's job. Amuje had charged the battery after she'd figured out how to do that. She'd been patient, she'd waited as long as it took for the little side light to turn green.
The nurse brought the tool into the room, and there was a change immediately: Those inclined to stand in an emergency stood, those inclined to burrow in an emergency reacted with big eyes peering out from their duvet-nests. The woman didn't notice, though, which suited Amuje. She started the contraption and pointed it at the woman, waiting for her to talk with impatience which was troubling even for her: she'd been so understanding about recharging batteries and outmoded technology; she'd been so willing to wait for it to respond to her, and she couldn't even wait for a disturbed, sleep-famished woman to start spouting philosophy! Or whatever it was. Amuje didn't know what it was the woman wanted, or was trying to communicate, or had stuck in her mind (part of her believed that the woman was trying to shake loose some grit of consciousness, something that wound around her brain when she was lying down, and that all she needed was to lose that tenacious thought and all would be well, the woman would sleep deeply and ultimately leave the home. Amuje thought about how much she'd be rewarded for her perception, but she didn't allow herself to make it more than it was- there would be a pat on the back, a word from management, a request to help others with her superior compassion, but no raise. To really hope for more money would be foolish.) In any case, there was standing or burrowing, and pacing from the woman who billowed her white robe behind her unconsciously. She paced and watched. Amuje kept the camcorder in her hand.
"I was thinking about that farmer. Were you thinking about him? Was anyone?" she started, and Amuje pressed record. "What we could use, really use in this country and probably everywhere, is a village-style collaborative justice. There could be some court that kept the peace in small increments, and the farmer could be confronted by the people who lost the youth that he killed. The parents? A girlfriend or a boyfriend, a best friend? I don't know who'd get to yell at him- a shrink could figure that out, provided you'd find one worth their Ph D's- and they'd need a psychologist there for the session or sessions, and the farmer would cry and the aggrieved could cry, and they could stay there as long as it took to figure out what punishment would be sufficient. You'd have to agree on it. They'd have to agree..." The woman tapered a bit, and Amuje worried there would be full stop. But the woman took a deep breath, indicated by her white robe opening around the chest, and continued: "The communal agreement would be the hardest part. We're so used to recrimination and the fantasy of revenge that actual justice, which requires detachment, is seen as being lenient rather than rational, but nothing will change without communal agreement. As it is now the boy is dead, the aggrieved never talk about it, and the farmer, the old farmer who was already alone, gets chucked into prison for a spell and if he lives he'll go back home ten times as frightened as he was. He'll go back home and acquire a gun, illegally if he must, and he'll be ten times more likely to shoot an intruder. We call that justice, for some reason..." again, the tapering; Amuje allowed the arm holding up the camcorder to slide downward a little. "But justice is something, something, something else- it's something other than that...i don't know what, i know...Amuje...is it ok that I'm calling you that?" said the woman, stopping.
"It's fine" said Amuje.
"I feel like my whole life is there but inaccessible. I had a whole life." the woman was whispering to Amuje now, not that it did any good: everywhere was accessible by sound as well as by sight in this building. The acoustics were state-of-the-art, which made Amuje think of woofers and sub-woofers, and she slid into public laughter, sideways and slowly. (There was just something about the word "woofer.") But the woman- her charge, for god's sake- was looking at the Nurse with some pleading in her eyes that was much different from the pleading looks the staff got from the patients who wanted more opoids. Amuje quieted. She didn't know what the woman wanted her to say, but she got quiet. "I had a whole life." The woman intoned again.
The Nurse answered her the way one answers those sorts of non-questions, but as she might speak to a friend rather than a patient at her work place. "You still have a life. It's a contained life, is all. But it's better than...than the...freedom that's so hard. The huge freedom, I mean. The demand that the Universe demands of everyone, which is to justify the use of the atoms that made you. Here you can concentrate, at least." Amuje said. She wasn't sure she was finished.
The woman looked at her for a number of long seconds, and Amuje used them to think. Did I really tell this troubled woman that her life is better than the outside because she can focus better? Do I really believe that it's better to focus than to be un-institutionalized? She was astonished with herself, and suspicous, because she'd never entertained the idea that the patients lives could be preferable to the outside world. She thought she might just be patronizing her charge. If so, she was embarrassed- Amuje reserved embarrassment for herself, kept it just to the side so she could feel it fully when her placating way was revealed as fact.
The woman settled a bit in her bed, where the Nurse had led (followed, really) her. "I'm tired again. I'm so tired again. I'm so tired and that's where I lose myself- have you ever been in pain for a long time?" she asked. Amuje had to think, but the answer was no. She was surprised, again. Even her two children had been delivered in a tense rush, and she didn't remember those labors as painful, really. They were- they had to be, they were babies- but she remember the labor part of labor rather than the stretching, ripping part. "No" Amuje stated.
"I have. Long...times, long amounts of time...when I hurt. It makes you mean. That's why I'm here- I was mean for too long. But tired is different- you don't get a chance to be mean, you're just an idiot..." the woman slumped downward, resting finally. Her eyes were open, though. "Did you record that?"
Amuje looked at the camcorder, forgotten in her hand: she'd just forgotten it was there, it had just become an extension of her arm, like a second hand. She had lots of footage of her scrub-covered thigh, but there was sound, she thought. "I have sound" she said to the woman. Amuje hoped she had sound.
"Ok. I have to listen to it, tomo..." said the woman, who was asleep by the end of the sentence.
Subscribe to:
Posts (Atom)