How to Feel, or: Hurting More

I have to take stock for a moment:

I have a chronic, and I hurt every day. Also, I'm exhausted, always. Those things will make your perspective (or your lack of perspective; honesty is best here) skew towards whatever it is in your world that isn't working perfectly right then. It can be anything: your spouse said a thing that you could infer was some shade thrown, or your kid is being childish, or your dogs just suck for no particular reason. So then you have to talk yourself down, as if your rational self was Kevin Spacey in The Negotiator: stiff with intelligence, intense, compelling, kind of a dick. Meanwhile you're on the edge of a building, sobbing into a stranger's cell phone about how things are never, ever, ever going to improve, and your inner Kevin feels a revulsion for the blubbering one. But your inner Kevin does the work and gets your sad self down from the building's ledge, again. (I usually see my sad self as being in a tree rather than on a ledge, as if it's more of a lost kitty than a potential suicide; the image of Kevin Spacey with a bullhorn yelling at a person in an ordinary public-park-type tree is much closer to the perfect metaphor of my inner struggle than the building ledge image.)

It kind of works, right? You have your own version of the above, right? Everyone has to deal with feeling bad or getting it wrong or losing their luck or their nerve. Except for one thing, the thing that makes the wheel go round: our inner Kevin is a douchebag, sneering quietly at our traumatized tree-sitter, and that means that we sneer at our own emotions. We sneer at the weakness in our own psyche, because it's the normalized thing to do. No one cries with abandon after the age of five- can you imagine? What kind of freak would we be if we just cried with our eyes up and our hands on our hearts instead of over our faces to hide whatever raw expression we're wearing? We learn it, and it keeps us from letting it really go.

This week has been difficult. Actually the past two weeks, beginning with New Year's Day. I walked my dogs along with friends in the inhospitable British winter darkness, around 4;00 PM. When I got back my hands had turned white and purple-blue (I have Reynaud's syndrome.) When the blood came back into my hands, it felt like rats were chewing my fingers off for fifteen minutes or more, and all I could do was lie on the couch and cry. I couldn't unbend them and hold them against the hot water bottle my husband had brought me because I was worried that it would hurt more and cause them more damage. Then I spent the remainder of the day- of the next day, too- making excuses for my weeping because crying for pain isn't something one should do unless one is having battlefield surgery to amputate your exploded leg.

I went to the doctor for my ten-minute appointment that I was lucky to get. The doctor listened to my story and even my semi-theories about Rheumatoid Arthritis that I'd semi-formed while Googling "REYNAUD'S PHENOM RHEUM ARTHRITIS FINGERS?!? in my free moments. She told me to make an appointment to have blood taken, and I have. Meanwhile, a mere hour after this conversation, I got a call from my child's school's special education co-ordinator or counselor or team leader or whatever she is. She's empathetic and disciplined, and overworked because of the Council's slashing of funds for special needs students (because it's not like they were using them for, like, everything.) She told me what had been said at my offspring's most recent talking-to, which had happened the day before:

Mrs. School Empath:

I told your child that the path they are choosing is one that will lead inevitably to failure.

What I Heard:

I think that between you and your child I can't decide which of you is the bigger fuck-up.

What I Said:

Yes, of course- I understand- this issue is long-reaching and we have to be direct in our actions...

Mrs. School Empath:

Your child is extremely clever and has figured out various strategies for getting out of any amount of work.

What I Heard:

I'm going to blow smoke up your ass about how smart your kid is in the hope that the flattery will make you listen more closely; now that I've done that I can tell you that your only child is a real asshole.

What I Said:

Yes, but the child needs to focus on their education- I know, I know- I'm so sorry about her learning to not work...we talk to her at home, too-

Mrs. School Empath:

We need to see some accountability on your child's part, and we're doing what we can now to build that feeling. I believe that we'll be able to help your child so that they can work up to their ability, which is very high.

What I Heard:

If your kid doesn't start toeing the public-school, uniformed, pre-regimented line, they are going to be kicked out. Onto the street. I mean "kicked out" literally, BTW...GOD, you are the worst parent.

What I Said:

Thank you.


It wasn't the worst thing that I've ever heard about my baby, but it was close. And it wasn't the first of those speeches, either: the child has ADHD, complete with all sorts of other Spectrum symptoms and sensory neediness. It gets in the child's way, as above. And even though I know there's a real- non-tangible, but real, very much so- reason for the problems, I hear about it and there are two things I'm bound to do: the first is when I'm feeling full and fine, because something awesome just happened that bolstered my sad self, and then I listen with equanimity and make a plan on paper. The second is more frequent because my sad self hasn't had any smoke blown anywhere near it's ass lately, and in that case I just sit there and try to make the right sounds until it's over. Then my inner sad self crawls up into a tree, and my inner Kevin Spacey has to come out and holler at the sad one until it gives up, climbs down. It's a stupid and destructive cycle and I'd like out, please.

I'm fairly sure that everyone knows what a diva Mr. Spacey is, or is supposed to be; I can tell you that the one in my head needs his perfect organic seedless green grapes- gently misted, not dripping thank you very much- in his trailer promptly at 2:00 every day. He is the kind of attention suck that needs everything to be about him, which explains the sneer and the loaded tone he uses when he's on the bullhorn. It explains why I feel so shit for feeling so sad, as if sad is a half-eaten sandwich I opted to pick out of a dumpster when there's perfectly good sandwiches at home. I'm sure this leads somewhere. Can I offer my Inner Spacey a better role in something? Would he be better as my panic voice, pulling out that bullhorn only when I don't check both ways when crossing the street and hear a car horn I wasn't expecting? If Inner Kevin is watching for mildly alarming events, he won't be all over sad self's ass.

Presumably I can just shed a few tears in peace and quiet. I'm hoping that once I do that, I'll be able to make a plan, write it down, and maybe find the child for a big, squeezy hug.

Spectrum!: The Musical

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?

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.

It Shouldn't Be Funny

I have a sleep disorder. It goes with the chronic illness territory. The older I get the more I hear that it's a sign or symptom or side-effect of...being alive, basically. Pretty much anything gets you some mangled sleep, in the form of Narcolepsy (falling asleep in front of DEA agents) and Central Sleep Apnea (sleeping while on mass transit) and Circadian Rhythm Disruption Disorder (which has something to do with birds. Maybe they roost on you just when you're drifting off. That's just a guess: I'm no clinician.)

In any case, there you are, lucky you- you have a sleep disorder, primary or secondary to something else that's wrong. So you're sleepy all the damn time. And you get sleepy during the worst, the absolute worst, times, such as when you're behind the wheel, driving to the biggest town in the area because you can't walk to the optician who is fifteen miles away, and also when you're having sex. It makes no sense because there you are, in the moment, driving whilst singing along to your Queen's Greatest Hits. Your teenage daughter is next to you, not listening with purpose in that special way that teenagers have, as if their Sarcasm Force creates a bubble around them and sounds bounce away, intimidated. Then your eyes start to close- they just close, slowly, your eyelids falling rather than drifting downward. It's horrifying. You swerve just to wake yourself up, just to shake a little fear into your own head, which is something you'd never expected to have to do: being in control of that many pounds of rolling metal and plastic was scary enough, especially when you factor in all the other people in charge of their own rolling, rattling sarcophoguses. (Sarcophogi? Sarcaphogium?) You may be "a little tired," but those people are maniacs! The remaining drive is fraught, slow, and very obnoxious: by the time you finally pull over, there are 37 people behind you because you were going seventeen miles an hour and they couldn't pass because there was always a tractor in the other lane. Always. You just wave to them, one by one, smiling through a closed mouth because every one who passes you has their finger sticking up. Sometimes they showed two.

I've done some research about how to deal with Excessive Daytime Sleepiness, as it's called, and it always comes down to this: I should simply Get More Sleep at Night!! I can't really fathom how advice this stupid can be perpetrated across the interwebs, but then again this is the same mode of communication that allows terrible video of neighborhood dumbasses raping local girls to play over and over until enough people use the hashtag #ComeOnWithTheRapeVideoIMeanCantWeJustConvictThoseShitheadsAlready, and it gets taken off. Until the next one. So I shouldn't be surprised, is my point. But continuing on, these l'il reports and whatnot always shovel out the same bullet points, to whit:

*Are You Getting Enough Exercise?  Listen, I walk a few miles every day, and that's on a light day- other days I walk lots of miles and/or swim some laps. This is no guarantee; yet the l'il report treats the exhortation as if it were made of some gold-like substance that leaps from your notebook's page directly into your eyeballs and come bedtime, you'll snuggle down into your own magic sleep cuccoon and in 8 hours you'll be as well-rested as a mountain bear in April...as long as I get nice and sweaty first.

Except it doesn't work.

* Are You Taking One Weensy Little 20-Minute Nap Sometime Before Noon and then Not Napping At All?  When you have some serious sleep disorder issues, the whole nap question becomes almost academic: there's no way you CAN'T nap. All I have to do is be in some daily situation where things slow a little, like 4:30.  That's a pretty low-key time of day, generally. Everyone needs a nice sit-down and cup of something warm come the late afternoon, and yet I need to stamp around and yell and generally act like a private in boot camp at 4:30 AM, ordered by my own self to GET UP, MAGGOT and DO FIFTY THOUSAND PUSH-UPS RIGHT NOW OR I'LL BE SCRUBBING THE KITCHEN FLOOR WITH MY OWN UGLY FACE. I mean this literally. I've been known to lie down on the kitchen floor- just for a second, I just need a tiny rest- and wake up twenty minutes later with the drool on my face bonded with the muddy paw prints and general ick on the floor. I really wish that the l'il reports would stop referring to Naptime as if it were entirely voluntary!

*Are You Getting Enough Sunlight?

.....What?

I Live in England, so the short answer is: No. Not really, and thanks for mentioning it. Unless it's summer, in which case the answer is Yes. Far too much of it, and thanks for mentioning it. This bit of advice is just cruel: if I could get enough sunlight, I'd be getting it, motherfucker. It's a taunt, and it's also insulting, as if I'm just too box-of-hair stupid to figure out that going outside occasionally is good for you and if you don't do it you might not feel great. It's also generic, because it's the same tidbit that gets sprayed around when you're foolish enough to ask the WWW why you're sad, or fat, or homeless. I don't know for a fact that the homeless are instructed to make sure they get 20 minutes of quality sunshine daily, but I'd be very willing to bet on it. I can just see the homeless person in question, sitting in front of the library's computer that they've been waiting for for five hours, typing in a search for local housing council contact information and getting a hit reading "20minutes (or more!) A Day of Vitamin D-Rich Sunshine can Allay Your Habitation Quandary!"

*Stop Worrying!

.....What??

Ok, it's a legitimate point. You just lay there and worry about sleeping, which makes you less likely to sleep. But to tell someone to stop worrying is like telling your teenager to stop thinking about sex, or your five-year-old to not concern themselves with the fanged, five-legged monster under their bed and just close their eyes. Plus- and this is less tangible, but it's true for me and therefore true for everyone, of course- we wants it. We wants our precious worry, petss. It makes us happy to let our little minds go in circles and to think up riddles for nasty landlordses when asked where our rents is, precious; and we wants to build up a rant in our skulls for the nass-ty SUV driver lady at the school drop-off who takes up two lanes on morningses, making everyone late, preciouss...I really think there's an addictive quality to worrying and that our current first-world culture places value on fretting about forty-eight things at once. Telling an insomniac to stop worrying is just more grist for the mill: you can easily fret about why you can't stop fretting. I've done it. It's one of my Top Five Bullshit Things to Think About Instead of Sleep, in fact. A normal night inside my head goes very much like this:

  ----ok i can sleep, i'm pretty sure that's sleepiness right there when my arm sort of jumped by itself a little, which is weird, i get the discharge of nervous energy stuff but what has that got to do with my left arm, ok the arm doesn't matter, i can just unwind now, whatever that is- it always made me think of water swirling down the drain, similar to unwinding but not similar enough, you know? Why can't i just think of things that unwind, why does my brain come up with inadequate similes, it might as well be dementia--oh god i may have early onset dementia--i'll have to make an appointment tomorrow, and also i need to stop worrying. They have mri's now that can take down the actual contents of your breakfast if you're even in the room with them so i'll get that somehow even though there's no one i know or can trust, crap i must be the worst friend, just the crappiest person to be around- i have to stop worrying. no one's getting an mri while i'm here in bed making up stupid things to be freaked about, in fact the stuff that i'm making up is really lame and very derivative of something, but i'm too tired to think of what-- some southern alt-punk band, i think- and i can't remember what it is and i have to STOP WORRYING, christ almighty- can't wait to see god when i'm dead so we can hash out this whole no-sleeping policy-----------------------wait that was good, that was sleeping i think, i was getting pictures like dreams but not dreams because i can hear the squirrels in the roof while i'm lying here but my point was that there were pictures. there was some celebrity, someone cute, second teir- jason bateman?- holding up an animated raccoon and talking about his next project, and i was going to say something about how that would be a bad idea, jason, you should really concentrate on smaller independent pictures with something legitimate to say about raccoons instead, it would give your career some much needed gravitas--. am i sleeping yet? was that sleeping? shit it was not sleeping it's just lazy advising to someone i don't actually know. god i'm getting weirder as i lay here- is that possible? it must be possible. ok i have to just LET IT GO now....now...now...ugh, 

etc.

I don't know the answer for my sleep problem, other than take the bus more (don't worry, I will.) The only thing I can think of that this may help is my prospects as a film producer: that pointer for Mr. Bateman sounds like it should be worth something, don't you think? Hollywood, here I come- after a rest. A nice, restorative rest.

Dogs aren't the best company

Seriously, they aren't.

I realize that's counter to both culture and my actual life, which includes dogs. Dogs who, without fail, are cute. I have a Boston Terrier who is named after a character in a Shakespearean tragedy, and I have a larger dog who is a festive mix of collie, greyhound, and lurcher. They are cute both together and individually which you would think might make them ideal scenery, draped around the furniture and across the floor with perhaps some brightly-colored toy from Ikea meant for a toddler. Yes, my dogs are the dogs of fashion and wouldn't bat an eyelash at having to go without their underthings in a Jordache magazine ad- but my god, sometimes I can't stand them.

I spend far too much time with them, is my guess. I'm home most of the day and that requires a certain amount of attention to dogs- all dogs would be perfectly content to sleep on someone's favorite something (doesn't matter what it is, as long as it will retain Dog Smell after they've woken up and moved on) but if you're in the house all that is right out. Now it's suddenly, and extensively, Dog Time. To wit:

Big Dog: Love you. I love you so much. Please give me your face.

Me: Oh, look how sweet you are. Oh, you want to give me a kiss? (Begins to bend down)

Big Dog: Love! (Puts entire mouth around my face. I don't move, because of teeth.) Love! (sticks tongue up my nose with vigor.)

Little Dog: Hey! Hey! Hey! Hey! Hey! Hey! Hey! Heyheyheyheyheyhey! (Pause.) SERIOUSLY, HEY! HEY! HEY!

Me: Little Dog, shut the hell up.

Little Dog: What? Were you talking to me? I have to protect the- (suddenly looks out window, one ear cocked upward.)  HEY MOTHERFUCKER! YEAH, I SEE YOU OVER THERE! OR AT LEAST HEAR YOU! I WILL SO KILL YOU AND THEN MY BIG FRIEND HERE WILL LICK THE INSIDE OF YOUR NOSE FOR YOU! MAYBE I'LL LET HIM DO THAT FIRST! HEY HEY HEY HEY HEY!!

Me: THERE'S NO ONE OUT THERE. There's no one, Little Dog. I repeat: shut the hell up. Damn.

Big Dog: He can't shut up because we're barking now! WOOOO! I love barking time! It goes great with chasing time! (chases Little Dog.)

Little Dog: Get off me you gigantic freak creature! Ohmygodohmygodohmygod get off me giant dog! I refuse to worship you! You are a barking, eating three-seater sofa! GET OFF ME OR I WILL RIP YOUR EYEBALLS OUT OF YOUR HUMONGOUS REPTILE HEAD! HEYHEYHEY THAT'S MY NECK- YOU WILL PAY FOR THIS-

At that point I decide to risk the damage to my kneecaps and wade in to separate them. It's not peaceful, and I wonder how anyone who has dogs gets anything done; I certainly can't. My most tranquil activity for the day is Salad Time. I make salad and my dogs sit patiently at my feet, almost a hundred percent barkless, waiting for me to throw them little pieces of raw vegetables. When I first began doing this, the dogs were confused, especially the Little One.

Me: Here, Little Dog! (throws piece of carrot to him, he snatches it by chomping it out of midair as if it were an attack canary.)

Little Dog: Yeah! (chews carrot, becomes concerned.) Hey! This is something that's not meat- there's no meat on this anywhere- What the hell, woman?! (spits carrot molecules all over kitchen floor section.)

Big Dog: Me me me me mememe I waaaaantt it can I haaaaave it? Can I have it can I have it can I have it- (I slip him a piece of carrot, he chews; after watching Little Dog's behavior he decides it's best if he spits molecules of carrot around his section.) Look, I made them too. I made them! I made them! I'd like to sing about the bits I made- RweeeeeOOOOOOOOOOOrrrrrrrrrrrrraoowwwrrr!

Little Dog: (looks at Big Dog with contempt.)

But little by little, the dogs have learned that it's OK to swallow the things I flick at them from the cutting board. I had no intention of training them to like salad but they have decided to like cucumber and carrot and snap pea pieces, mostly because that means I keep throwing things at them. It's a kind of attention, which everyone knows is better than no attention; and so I keep doing it, which makes me abusive. I'm an abusive dog owner, forcing my dogs to pluck (or in Big Dog's case, lick) vegetable chunks from the air for my enjoyment. Perhaps I'm not being fair to myself: they sit there, looking at me with their cute eyes and their accidentally matching pelts, and I start throwing salad at them instead of cookbooks or Dutch ovens. We've met each other halfway.

In the meantime, there's always old age to look forward to. There will be far too much napping and pudding-slurping to worry about noises from outside the building or just the living room, for that matter. To be frank, I don't really care which one of us gets there first, the dogs or me: I just plan to enjoy it.

The Consequence of Being Good

|Norma had spent her entire life being good, or trying to be good. She was a volunteer at a basket-full of charities, some more seriously than others. She tended to be more attracted to charities that didn't mean much to people, like helping to clean coastal rock formations of the collected bird poo and beer cans that built during the year; no one really warmed to that when she mentioned it. Another one was scanning pictures of unidentified seeds for a local county college. The seed pictures would go into an archive of seed pictures, never to be seen again but for the teacher who had received the grant that paid for the time spent scanning the seeds. He would smile at her in a more real way, but it was a distracted smile and he was the only one doing it.

Her reason for volunteering so much was unclear. She had money so she didn't need to work. She'd inherited her parents sizable retirement funds when they both died in a car crash the same year she graduated from college. Just when she was to be shooed out into the world, expensive piece of paper in hand and higher-than-was-realistic expectations in her head, she was given all  the time in the world to grieve. She was told to take all the time in the world, in fact, by just about everyone she met, even those she had barely any knowledge of, like the recycling guy who came every two weeks to pick up her empty wine bottles and stacked newspapers.

"You're so young, it's a pity. It's always a pity when it happens, it always is. Just take as long as you need, sweetheart." He was standing there in her driveway, holding her emptied bin in his gloved hand, looking at her face with a generic tenderness. After a time she thanked him.

A year later she hadn't looked for work but had instead found a boyfriend, who became a husband. He was nice. He died after their two year anniversary from a brain aneurism, a small explosion in his head that was about as big a shock as Norma could imagine. He had taken out a life insurance policy for no reason other than it was very cheap, given his age and health. And because he was nice. So, again, Norma was told to grieve, was given permission to take all the time she could possibly want and then some (the woman who ran the support group for young widows and widowers told her that: "You should take all the time you want, then take more time. Take as much time as you can get." She said it like it was a refund of sorts, and it might be taken away or run out at some point.) The amount of money she had, what with her parent's retirement money, made it reasonable for Norma to never work.

Her reasons for volunteering were mucky, or too sharp, or messy or messed-up, or wavy like heat waves coming off of hot asphalt on the horizon...that was how she described it to herself when she thought about it in the shower or buying some groceries, when she was doing her daily chores and didn't want to derail and end up staring at her middle, actually gazing at her navel. She'd done that far too many times. So she brushed off her need to examine the unexamined altruism. When she was almost asleep, though, her denied consciousness would tell her why she was doing it in pictures: there were dreams, light dreams that came on in the beginning or at the end of sleep, that were about becoming an amorphous cloud or a sheep that is stuck in briars, or being chewing gum. The chewing gum one was just funny, but the cloud and the sheep meant something about something. Norma tried not to think of losing herself, losing bits of herself to thorns or breezes, and it mostly worked. She just volunteered at more places, and that made her tired which made her forget about the whole stupid  kittenish game her mind would play with her.

This went on for years. She dated, she took up ice skating and never gave it up. She had a breast cancer scare that turned out to be nothing. She donated her time and not inconsiderate soup- or cookie-making skills to homes or parties or sales. She made friends. She had many friends, most of them older than she and all but one of them was a shut-in. This was just how it worked out, there was no one to blame for her circle of pathologically shy friends unless you wanted to count the friends themselves, which she did not. Three of her housebound friends were on some charity's roster of people to visit, but the other four were not. Norma visited the four non-roster friends as if they were part of a job anyway- that way she was being fair, she felt. She always brought something of hers along to each one of them, usually part of a batch of something she'd baked- she was never empty-handed. Never.

After a while- a good long while- she became less. She was less of herself, somehow, though in the physical realm she was more (she had her own buttery fingers to blame for that if she'd thought of it. She didn't.) Despite her larger size, and despite her muscles that were strong beneath the extra padding because of her regular ice-skating, she was diminishing somehow. She was harder to get going- she had to jolly and wheedle and boss herself out of the house sometimes, as if she were her own sleep-deprived teenager. While at her job/visits, she would occasionally stare into space while her friend talked about the view outside that day or their nephew who was going to call but then didn't . She fell asleep at her oldest friend's house, sitting on the sofa and snoring delicately while her mouth hung open and her friend sat and watched her. It was a weird thing to do- both the sleeping and the staring- and when Norma woke up after about twenty minutes, she nearly broke her neck apologizing;  Beth Anne did the same.
-
"I'm so so so sorry-" began Norma but Beth Anne cut her off at the pass.

"No more sorry than I am, love; I shouldn't have thrown that grape in your mouth. That was so terrible, I don't know what possessed me." Beth Anne looked down while she said this: they both knew what had possessed her. She was in self-imposed isolation because she had profound impulse control issues, and couldn't trust herself to not run out into traffic or worse, such as what had just happened (in Beth Anne's mind, the grape was worse than the traffic-dashing.)

"I don't know where-" Norma began, then stopped. She was about to finish with "- I'm going" but that's not what she meant. She meant she didn't know where the bits of her were going- she hadn't explained about the bits, the wisps of self that she couldn't account for. "I don't know what's wrong with me." She thought that was close enough.

Beth Anne thought she knew- she said she'd seen it before, that it happened to people who came around. After a while they simply evaporated, she explained. It was a slow process. Beth Anne counselled Norma to lighten her schedule, to drop a few roster friends or to bake less (there was more than one reason to deny themselves some of Norma's cookies, she said, smiling ruefully at her own commendable lap.)

Norma thought that was a terrible idea. She couldn't give up the rounds: those were her friends, they were friends now, despite their original entry into her life as names on a list. She looked up different recipes to make: meringues, and muffins made with low-fat yogurt and applesauce for sugar. They were good, and Beth Anne relaxed some and her other friends didn't notice or if they did they didn't say anything, just thanked her. She was with a friend (a roster name, though no one was counting any more) when Norma felt the first scrap of her physical self fall or slough off (she could never be sure: it was a judgement call, and the difference between a falling or a sloughing was so fine she would vacillate between those descriptives when she did try to really describe it. It probably goes without saying that she only tried describing the event to herself. )

It was a fingernail.  A whole one- a whole pinky nail, from her left hand. It dropped rather than drifted to the ground just outside her friend's door as she was leaving. There was no blood as there had been no banging or catching: it was just her fingernail, falling. The bed was pink and very sensitive all of a sudden, feeling the mild breeze as no regular skin could feel, but otherwise it was fine. There had been a little tug, and Norma looked down, and...fingernail. It should have been gross. Instead it was alarming, and she felt another bit of herself loosen and drift:

"Fuck a duck." Norma slipped some fingers atop her lips as if that would take it back. No one had heard her, thank goodness. Cursing- profanity, she thought of it as profanity though she didn't go to church and didn't know what generally constituted the profane- wasn't something Norma ever did. She had the vocabulary, but she didn't use it. She judged those who did as being a little weak or careless; those users of profanity in the everyday were basically children and therefore prone to impetuousness, she felt. So the vocabulary lurked, placid in her brain, never too close to the front of it. She couldn't remember the last time she had cursed, or if she ever had.

Norma picked up her fingernail and dropped it in the next bin she saw. She decided, with a patted-down firmness, that she wouldn't curse again. She got home and eventually went to bed, then got up and made something else to eat and brought it to the home of the woman who was organizing a charity sale for something, some sport-thing. A charity bake sale to raise funds for some new pool equipment, so that disabled people could get into the pool more easily...a motorized lift-seat for the pool, that was it. Norma repeated that fact to herself five times before she got to the house of the woman, but it never came up. She handed the cake over, smiling, already thinking about an alternate route home due to road closures she'd encountered on the ride over, and as the woman took her cake there was another tug. Same finger- the nail-free finger, the left pinky. A big tug, it turned out, because the woman had clasped it along with Norma's cake and when the exchange was made the finger came off of Norma's hand.

Norma looked where the tug had been, the pull or tearing or whatever it had been, and saw the stump. There was some blood- enough to cover the area, enough to convey that there had been flesh and it had been damaged- but really, it was no worse than a skinned knee. She looked at the organizer woman and felt tugging from her brain, or in her brain, right behind the forehead.

"Fucking ass hellish butt-luck, lady. Just the finger-stealing bitch time, eh?"

The organizer woman looked at Norma and looked down at the finger. "Are you all right?" she asked, with an expression that mostly said she didn't want to know the answer. She held the finger out to Norma, as if it were a tissue Norma needed just then. Norma took it gently, mortified: she'd lost her finger. She'd lost words that she didn't necessarily count among the words she knew. They had tugged off of her. Norma left without answering, which given the situation wasn't even that rude.

The week continued like that. There were pieces of Norma falling everywhere: there were more fingers, and there were the fingernails before them like white flags; there were toenails that she alone saw with horror; there were a few weird chunks of hair. Her temples were pocked with white scalp, shiny as if she'd been shaved for surgery. And the words, which were so much worse to Norma: terrible droppings of crass syllables, laden with meaning and intended to shock, she realized. The words were meant to call attention to her calamity. She couldn't abide it but she couldn't make it stop. Some of the things she'd said that other people heard (or overheard):

"Some cuntly piece of shitside work right here" when her other pinky came off, in front of a man who was taking her money for the milk she was buying.

"Balls and dicks and a pretty gash, that's some fucking horsegut" to one of her roster-friends, who was taking the cake plate from her when her first chunk of hair fell out.

"Fuckity fuckity fuckity fuck-bait with a fuck on the side" to her doctor, who managed to get her right pinky to fall into his hand just by gently holding it in a pincer grip.

This doctor sighed. There was very little to do, since there was no blood and no pain and no damage to any major body area. There was a lot of wait-and-seeing advice circling the room, and some more sighing and a rake of a hand in the rumple of hair.

"Is this shit bonafide? Are you licking my clit, that's all you fucking have to say you shitwad?" said Norma. She'd felt the tug before this came from her mouth, but along with the mortification there was a feeling of lightness. There was a springy focus in her mind after she said that. It was the best feeling she'd had in a week and a half.

"Uh." said the doctor. "Well...uh." He raked the hand through the hair again. "Sorry, I just don't know. Normally there's some sign of trauma, some regular sign like damage to the skin and there's bone and there's the tendon, just..." His volume slipped down, then off. He shrugged, then said he was ordering lots of tests- "Just lots of them" he'd said- and sent her with instructions to wait and see. He asked the receptionist to make an appointment for Norma for the following week ("So that's what you have to do to get an appointment in less than two months! Hoopty-fuckin-do!" Norma said, which, relative to the other things she'd been saying, was only mildly perturbing. "Ha ha" said the receptionist, who was looking for an obscure phone number that Norma was to call if there were anything else that she shed before the appointment.)  Norma went home, with one less digit and one more piece of business card in her purse.

Norma thought at home. There were so many words, so many, and so few of them were nasty little pieces; yet those were the words that flew around her skull like CGI ghosts in a horror movie, threatening (no, promising) to gout onto her tongue so that she might spit them out at some horrible moment soon, soon. And the prospect was not bad but dire, because the thing was she wanted them out! She wanted them free, she wanted to say those words and others as if she were saying "what a delightful cheesecake, not too heavy, I must get the recipe"! She could only hope to contain the potential social mayhem by containing the agent of volatility. Norma altered her schedule- it was the only way.

She went to work first thing the next morning, calling everyone on her visitation schedule, roster or no, and telling them that she'd only be coming in every third week (it seemed like a reasonable assumption that she'd be able to hold the words in if she only needed to every third week.)  She made sure she was home at 2:00 every day, and drew the curtains gently but firmly so that she could nap. She took the nap. None of it was as big a help as she needed it to be. She looked forward to seeing the doctor, since it was something to look forward to.

The day came: an appointment with a doctor, some other doctor who knew what they were doing. She wasn't told that the new doctor was more competent. Norma assumed this because it was a reasonable thing to assume: she pictured someone with a tool belt over their white jacket, holding her pinky- which was labeled and telling in it's scientist's jar- and squinting. It was the knowledgeable squint that made the fantasy seem more than what was happening. Norma felt her head was liquid inside, all of the words she had known were moving about like eels and making her giddy. She knew enough to dread what was coming, but she also couldn't help the pull of the unthinkable words that she was thinking. She smiled on her way to the office.

The doctor- or rather the Doctor- did a great deal of verbalizing herself. "We don't understand the pathology yet, Norma, but that's not because we can't understand it; it's really because we haven't identified which system we should be concentrating on yet. There's the obvious ones, like the mechanical systems of muscle, tendon, bone. There's also the CNS, and your endocrine systems, which would normally have no significance in your shedding-" and blah blah blah.

"Blah blah blah" Norma said. She beamed right after she said it, despite being very embarassed.

"It is a lot of talking I'm doing, I know. You'd be amazed how much doctoring comes down to just talking. Or not talking." The  doctor was testing the reflexes in her hand. Norma looked at her bent head, knocking her knees with one of those little dopey hammers. She was a dark-haired woman and she was using one of those hammers on Norma's knee, so she said something.

"You're a fucking Kike, right? Am I right? A Kike? I'm not sure what a Kike is. I was thinking while you were talking that you could teach me about jewishness. I could pay you for your fuckin' trouble, I know the Heebs like their gold" Norma said.

There was a hush that descended, and it was so deep it seemed that the patients in the other rooms with their doctors had heard the insults and were quiet so they didn't get blamed for anything.  Norma COULD NOT BELIEVE she'd just said that, yet there it was: the wide-eyed stare from the Doctor, her eyes like giant coins on her face, and the silence. The words themselves were practically visible, swishing around in lazy circles above their heads. Norma thought to giggle- it was what she wanted to do- and immediately clenched every muscle she could isolate so that she didn't. Except, holy crap, there was more-

"Anyway, you don't look like a Kike unless you're a Kraut Kike, which is funny if you think about it. It's hilarious, am I right? I'm saying that you don't look like a regular Jew, you look like one of the Jews that Hitler might have missed because your eyes are blue and you didn't go to temple much. So your name didn't appear on any lists, and you lied and gave away families that you knew from years back so that you would appear a Kraut to the captains that mattered. Like that. You look like a Nazi Jew is what I'm saying." Norma literally could not stop the words coming out of her mouth: she tried to lift her hand up to clap it against her awful traitor of a mouth. The hand, a part of her body that obeyed her every command except the implicit one that normally kept the fingers attached, wouldn't budge past her sternum. She sat there spouting hateful Nazi-centric bits with her hands fluttering around her chest, neither getting to her mouth to stop the abuse. She was giddy enough to worry that she might faint.

There was that silence again. The Doctor stared at her again, and the whole building was hushed while it waited for her response to the vitriol. She opened her mouth and said "Give me your foot." She held out her hand for it and waited. Norma didn't know what to do other than give her her heel. She put her left foot in the Doctor's hand, expecting the scalpel, expecting the scapula, exultant in her fear of what was to happen, which she was sure would involve vivisection. She expected it so hard that it became wanting it, but again, the surprises: this alleged Nazi Jew just held her foot and gently pulled on each toe in turn. Of the four that were left she got two. The doctor put her foot back down on the floor, so gently, and held Norma's toes in her own palm, playing with them, switching them back and forth like they were Ben-Wa balls. Norma felt nakeder than before even though technically she was less naked.

"Are the outbursts part of what's going on? Do you feel upset or overwhelmed when you talk?"

Norma stared at the toes in the doctor's hands going around in little circles. "What the fuckity fuck do you think, assdick? Am I the only one here who can extrapolate that shit?" Norma felt herself shift away from the whole conversation. She listened to herself insult and berate the doctor at every question and at every blank spot in the talking, and it was not pleasant but at the same time it was. It was ever so pleasant. Norma spent the remaining time listening to herself with gleeful horror and then was sent home with her toes in a small plastic bag that was just the right size, as if purpose-built for two human toes. When she got home she sat down with a cup of tea. She took a deep breath and spoke, deliberately:

"Holy fuck-damn shitty ass cunt, cuntly gash dick-ass hole runny gummed up pissing cum-mouth. Fucking fuckity shit damn fornicating curly headed cunt-hats, with some puny soft pus-filled dick-shits. Merry fucking cunt hell, with a ho ho ho and a nasty tit-job that's all fucked to hell with yours truly the most fucked of all the fucking hellish bitchy shit-stains every to fart her way through some bullshit life with not the least fucking clue about how to fuck this shit when it shitstorms around in a helatious fuck-fire and can't suck the tits off anything, not even her own stupid cunt-ass self."

Norma looked at herself in a mirror after this- she looked carefully. Nothing appeared any different. She pulled a small handful of hair, quick and hard, and it fell off into her hand. The diatribe of nasty words had done nothing- if anything she could feel them swirling around in there, more of the same, ready for someone to pull a bit of her away or just for someone else to be present. After a solid hour of this, she put the mirror down and headed to bed.

The next day she got up and brushed her teeth, then put a scarf around her head to hide the now-remarkable loss of hairline. She drove to Beth Anne's and rang the bell.

"Hiya." Beth Anne was still in her pyjamas. Norma had brought hers along, hoping for an invite. "You're not supposed to come today- you were just here the other day. Day before yesterday."

Norma smiled, and felt the words shiver in her skull. "Hey Beth-Anne, do you have a problem with cursing?" she said.

Beth Anne smiled. "Fuck no" she said. Norma smiled back. It felt like the first time she'd smiled- or rather it felt like the first time she had felt like smiling since her pinky nail had fallen floorward.

It's Better Than the Alternative

When my father was still alive, still very alive despite having prostate cancer that had, at long last, moved into his bones, he was mildly explosive with his insights: he would have a lot to say, and it would come out of him in a minor torrent. Usually they were about his life. After one particularly harrowing visit with his oncologist who had given him some really high numbers relating to some really lousy test results, he walked up to me in my condominium and told me that being with Mom was amazing. "What a ride" he'd said about his life with her (and since he was from a different time and place when he aquired his slang, it meant that it had been an adventure to be married to her. The possibility that he might be using some double entendre about his wife to his child never occured to him.)

"Dad, you're not dead yet! Stop talking like that" I said, or something like it. I had the self-awareness to say it gently, at least, but when I think of it I wince at the selfishness of my poor stupid younger self, trying to get away from those implications. As if it were about me. Fortunately, Dad would not be put off: he was trying to talk about my mother, his wife of many years, his soul mate. He talked about how she wouldn't have much truck with romance and flowery talk, how she didn't care at all about how she looked, not really, but how much he saw her beauty anyway. It was a pretty fantastic moment, and I'd gladly lose a limb to have him around to tell me- for too long, of course, because he was an old dude and that's what old dudes do- but I'd happily sit there, minus an arm or leg, massaging the place where it used to be and listening to him go on about my mother.

This is something that he would say a lot during that last two or three years: he'd tell me his latest PSA count (Prostate Specific Antogen) was over 1,000. "What?" I'd always say. "How are you still standing?" And he'd explain that he'd just go on, or try a new medication, or sleep during the day. "Besides, it's better than the alternative." This was his sum-up: all of that was still better than being dead. And lately that sentiment has been seeping into all sorts of situations, just like I was the heroine of a long-standing situation comedy and that sentiment was my precocious niece who'd dressed as a boy and gotten herself locked in the linen cabinet right by the master bedroom in the haunted hotel we're staying in....Yeah, like that. Pretty much.

I'm prone to anxiety (well, "prone to" might be a bit of misrepresentation- it's more like I'm "forced to experience" anxiety.) Anything can become fraught when you're afraid of doing things wrong, such as making phone calls to someone who answers phones for your dentist or shopping for garden supplies. I was in a garden center yeseterday, a big one that also sells shoes and coffees and hot tubs, and it was a miracle that I made it out alive- I start to sputter and wander ineffectively when I'm around that much vegetative choice. My mother was an excellent gardener, and I want to be a gardener at least, so I go to garden centers. I leave after an hour and a half of rambling around, usually empty handed or perhaps with another toy for my dogs, who need toys just like I need additonal fat stores. I can't handle the choice, I can't handle the responsibility, I don't know when to put a cloche on a tomato plant. The spirit of the The Gardeer tsk's me under her breath, which should prove to me that it's not really my mother it's that unwanted precocious niece, wreaking her havoc. It's what anxiety does.

And just lately that saying has come to me, like the incongruously helpful concierge in my personal sitcom, reminding me in a steady and calming voice that being out and choosing something is better than the alternative. In that circumstance, the alternative is staying at home to feel un-challenged, un-stimulated, and therefore not moving forward. Not trying anything new, or just not trying at all. I'd never have thought of myself this way: as someone who is in any danger of stagnation, as someone who has a clear path to the non-stop panic of the shut-in or partial shut-in. In my twenties I was clear about my priorities, and when I thought about the dangers of staying alive they would be images of staying up too late and messing up my skin, or not meeting the right person to marry. I thought about being famous and the perils of becoming famous- which to my mind were non-issues, and so I barely thought about them.

But that disregard was way before the stupid realities of continuing to breathe here on Earth poked their stupid heads in my glorious imaginings (seriously: fame? What for?) It was certainly before I did find the right person to marry, and have a child with him, and  go to the doctor to find out what was the deal with all the pain all the time and all the sleeplessness. It was before the diagnosis of a lifetime of said pain, sorry about that, and it was before the death of three people I loved, two of whom were my parents. My beautiful, frustrating, idiosyncratic, hopeful parents are gone. I have to be my own parent now, in addition to being a parent to a beautiful, idiosyncratic, demanding, special needs child. So it's no fucking wonder, really, that it's hard to make a move now, since making moves can make things change, and change has been a very bad neighbor of mine for the past thirteen years...but: when I'm scared of whatever it is- buying the wrong plant, for example- I'm remembering that buying the wrong plant is better than the alternative.

I could be the shut-in or partial shut-in, I suppose; however, I have better things to do. There's travel to plan and fruit to forage in the summer, and subsequently there's jam to make. There are plants to buy and then kill, or not (hopefully not.) There's home to go to and home to visit. There's languages to learn how to speak, in support of the travel that needs to happen. Did I mention my husband? He has amazing laugh lines, and I have to watch them open and close when he's just seen or heard something really funny. As he gets older they get better. So: there are a great many reasons to fight the squeezy hand of worry, and the fighting is in itself much, much better than the alternative.