What Dancing Was Like

I don’t remember seeing my first ballet, but it doesn’t really matter. Show a certain kind of little girl any ballet at all, Giselle or Romeo and Juliet or The Nutcracker, and with sparkly visions of being the best at toe-dancing, this perhaps slightly theatrical girl will become obsessed. I became obsessed when I saw...let’s say it was the Nutcracker, because it’s everyone’s gateway ballet. There’s a girl in the cast, sure, and she gets to throw her not-satin ballet flat at the Mouse King, but really the one that caught me was the Sugar Plum Fairy. She of the beautiful gold-edged sleeves and shining tiara and that fucking tulle skirt! It sticks straight out so that you can see her legs better, and when she turns and turns it’s there, as constant and fancy as any standard-issue handsome prince could ever hope to be. Some adult suggested that I could play the girl when I talked about it later and I scoffed in their face. “I’m gonna play the Sugar Plum Fairy” I said, and then I probably did some pirouetting of my own to prove my point. I was brilliant, I’m sure. 

I had lessons at the Felix Dance Academy, in the basement level behind the Brooklyn Academy of Music. The instructor was a bitty little red-headed woman who would make us get into stretching positions and then sit on us to deepen the stretch. She would single me out whenever we did the butterfly stretch, sitting on my back and telling me to breathe out, but it was worth it to stay and be allowed to the barre and then allowed to the floor for leaps. I loved it so much that once I went when I was feeling very ill and ended up puking right in the center of the studio, too besotted to just stay home. When our first production came- the first I was cast in- I was made the white cat in Sleeping Beauty. There had been talk of me being the Bluebird, which is a solo, and like the diva I intended to be I threw a fit about not getting it. (My mother made me apologize to Anne, by duet partner, and if anyone knows her please let her know that I’m really sorry and not just saying that because my mother made me. That might have been true when I was seven, but now I mean it. You made a gorgeous black cat, Anne.) 

We moved when I was twelve, from Brooklyn to Blairstown, New Jersey. Don’t Ask. As much as that sentence sounded like it sucked, it was eight times worse. My mom found a new dance studio for me which was pretty cool of her considering she was in the throes of rising her first business as an organic berry farmer (my Mom was always about twenty years ahead of the curve.) That studio was different. It was the teacher’s family’s house’s garage converted into a “wood” floor with barres along the walls and no floor-to-ceiling mirrors. Not one. I can appreciate how much a floor-to-ceiling mirror might have cost in the 80’s, and if I work at it I can imagine how Not Available such a mirror might be: I mean, where would you have ordered such a thing? The Sears in Hackettstown, for god’s sake? The instructor was a Goofus and Gallant cartoon version of a ballet instructor, with her being the overweight housewife Goofus to my previous injurious dictator Gallant ballet teacher. She barely remembered all five primary positions, the cow. My traumatized twelve-year old self already knew things were going to go south, and that my career as a Prima Ballerina was in the balance (get it?), but I went to that school and went through those motions because I was so very close to getting my first pair of pointe shoes. 

Really quickly, for those who don’t know because lots of people don’t, ballet dancers (the women, and the Trocadero de Monte Carlo, a drag company of male dancers who dance en pointe for comedic effect) don’t actually dance on just their toes. That beautiful satin hides blocks of wood that have been shaped to look like that, with the ridiculously small flat surface on the bottom and a hollow inside for the toes. They have to pack the toes with unspun wool, then they have to tape their feet up to protect the joints and the skin. Then they have to dance in them until they’re “broken in,” which is a misnomer because the only breaking that happens is in the feet themselves. Then they have to smile and put their arms just so. Dancers, especially ballet dancers, are made of pure grade 10 steel, every perfect line and bird bone as unbendable as that, just underneath the layer of tulle or spandex or sequins or, if you’re the steeliest one in any production, all three. (I knew a dancer once whose hips weren’t open enough, he said, and so he slept with a ten pound weight pinning his knee to the side on his mattress. The next night he’d do the other hip. I’m not making this up.) And I was going to be one of them. So I went to lessons at my new ballet garage until I was given the nod to get the pointes. As soon as I got them on my feet and hoisted myself up I knew this was going to not work out, because, just like childbirth, they don’t tell you how much it’s going to hurt. I went to the lessons and I loved the minutes I spent en pointe, gently waving my arms around like drifting seaweed (that was one of Instructor Goofus’ descriptions, but never mind,) but the second my feet were flat again I huuuurrt. In my feet and my legs and my hips, which were my harbingers. The moment I admitted to myself that I was never to dance the lead in the Firebird (or in the chorus, for that matter) was when I was sitting in my seventh grade English class and the kid in the row next to me said “Jenn!” and pointed at the floor. My little toes had bled through the band-aids I’d wrapped around them and then the new white tennies my mother had just bought for me. I’d double-layered the band-aids, too. My toes wouldn’t stop bleeding. 

So I gave it up and my mother heaved a sigh of relief, I’m sure. I started dancing on my own, just basically throwing myself around a lot in the afternoon to my music. Plus there were school dances, and I would thrash around or move my feet in weird ways that cemented my reputation as a freak. I didn’t care while the music was playing. In college I met modern dance, and belatedly found out that I actually did have some talent. I took a year’s worth- just a year, plus some movement classes- from one of those alchemist teachers who’s able to get you to work at a higher level. She was the same basic dancer-shape as my very first ballet teacher except that she was kind. She had us performing complex choreography to beautiful, weird music and it wasn’t pretty, really, but I loved it and I did it well. I loved leaps the most. I knew how to make my legs work so that I could feel that hang in the air, like I had made time stop at the very height of my jump, you know how like they do, and it was bliss. I probably loved it so much because no part of me was touching the Earth in that moment, and Earth-touching was already becoming problematic. 

My hip problems had started in High School, gifting me extra time between classes because I couldn’t walk after sitting in class. I would fall on the floor sometimes, or lurch my way to my next class by holding on to a wall. I was taken to a chiropractor who gave me standing x-rays and told me that while my hips were a problem, wonky and unbalanced, my neck was worse, leaning straight forward instead of gently curving back. He would crack my spine and my hips and neck, and made it marginally better. I spent a lot of time at physical therapists after schooling was over, and it wasn’t until I moved to Chicago in my twenties that I was told I had Hypermobility. The pain moved from my neck and head and hips to my muscles, my shoulders, my feet (of course my feet.) I limped along, right? This is what we do when we don't have answers. Eventually I got married, got pregnant, and the pregnancy was what pushed my defective physiology past the arbitrary boundary of “come-and-go pain” into “constant pain.” I went into my regular GP and he was the one that suggested I have Fibromyalgia (a condition of constant body pain and fatigue.) I had good insurance, so I was sent to a doctor who specializes to hear that I did have it. I took a lot of pills, and a few of them dulled the pain. The other ones made me sleepy, or possibly it was the undiagnosed Sleep Apnea that kept me in a constant miserable haze of fatigue and stupid. During this whole time I was researching what was going on, trying to find more specific answers, some understanding of how my body could be so fucked up. I found something called Ehler-Danlos Syndrome and...it fit, and it fit for my grandfather who had a certain body type, and for my father who bruised easily and who was impervious to Novocaine, and for my Aunt, my favorite Aunt, who is disabled with body-wide joint pain. I only just saw a Rheumatologist that told me I have Hypermobility Spectrum Disorder. I’ve been searching for a reason for thirty-four years. 

I dance almost every day, now. My days are painful- every moment of them, to one degree or another- and it gets worse as the hours pass, so that the clinging ache starts to become more conscious around five PM. But I am the homemaker for my family, so I’m the one that has to cook. My joints start to burn instead of just ache when I’m cutting food so I turn some music on, something “slapping” as my teenager would say (and saying that has probably just killed that slang. You’re welcome,) and I dance around my kitchen, cooking and washing dishes and whatnot. My feet will start to get stabbing pains and I flex them and then point them, rolling through the mid-foot like a ballerina warming up at 9AM. Another song comes on and I’ll turn, and spot every half-turn because I can’t do it just once per.  Standing at the stove is harder because there’s less moving around the room, so I plant my feet apart and sway, careful of my hip joints, so careful, feeling like a member of the Corps who’s been away from the studio for a month to baby an injury. But I keep swaying- I must do this. Everything that my own personal universe throws at me is just another challenge: how can I move through this? How can I keep dancing, now, with this new or just the same hurting? I put on different music, I turn it up, I do an arabesque on one side and then on the other, just to show my body that it can. My hands throb and I remember to hold my pennies, like that evil redheaded woman  showed me when I was seven. Be graceful I command them. I do not leap any more, because that is too much: I won’t do an amended leap, something half-wonderful and not inspiring, so I just don’t do it. But the rest I do: I have an amended pirouette, and amended kick-turns, and amended plies. No one is watching me. I do not care. I’ll paint my face in war colors and make my pain move instead of have my pain move me, trembling and afraid. Come at me, I think. Give me more, I think. I’m a fucking dancer: I’m made of Grade Ten steel and I can dance through all of this. 

The Shell

I found a vintage shell in the closet of the summer house my family got to share with our Mom’s side of the family every July. I should say that by “shell” I mean sleeveless blouse. It had carved mother-of-pearl buttons, and was a delicate seafoam blue-green, and it had embroidery. The embroidery showed some people somewhere tropical- there were two people, with one palm tree each, and they were tilling the land with hand-held tools. The people were brown. I thought the shirt was charming. I genuinely thought that the people represented were working their own land, and that the thing was from a different time and everyone would see that. I took it home when the vacation was over. 

When I first wore it it was a sweltering day and no one mentioned my brown farmers, so I dismissed the little nagging voice that had been telling me that the garment was perhaps not good for wearing. The next time I wore it I got checked, by a coworker. We had caught the same train together at the end of our shifts. “Where did you get that shirt?” she asked me. “Technically it’s called a shell,” I said, because I can be a real wanker. “I know that, but no one calls them shells except rich white lady grandmamas,” she replied. I thought of my own rich lady white grandmama and it was probably in that moment that the scales started, haltingly, to fall from my eyes: that woman was as privileged as they come, and over the years had collected some truly reprehensible views of certain people. I realized that I had just thought the phrase “certain people”, which made me a little nauseous. How privileged was my grandmother? She was so privileged, she wore sweater sets the way most people wear t-shirts. She was so privileged that my grandfather apologized for buying her an estate sapphire and diamond ring for their anniversary because they were young and didn’t have enough money for new yet. She was so privileged that during the Depression she went with a friend to Europe on the Grand Tour, and when I asked her what it was like she complained about the public toilets. But I wasn’t aware of all those associations going on in my own white lady head yet. My friend pushed me. “Isn’t it a little racist?” she said.  I looked down at my own chest, to where my farmers were working away, and thought: Nah! 

So I did what any defensive white person does in such situations: I accused my co-worker of being the racist. “They’re farmers! They own this land, you’re the one who’s seeing it that way! You racist!” I added, for emphasis. My friend seemed a little chagrined, and though she was completely in the right I felt vindicated. Check out my farmers who own the land that they are currently farming on this shirt! This shell is not racist at all! And yeah, I’m going to keep calling it a shell even if that’s pretentious! I’m not pretentious you’re pretentious!

The next time I wore the shirt I caught the train home from work alone. I sat and immediately started day-dreaming. My commute was a long one and on that trip it took at least a half-hour before I noticed that there was a young woman, younger than me by a half generation at least, who was sitting with her arms crossed, staring at me. She just stared, and it was a little hostile I thought. I looked at her and did this: (MAKES EYES WIDE, LITTLE SHRUG, SMALL MEALY CLOSED-MOUTH SMILE.) She didn’t flinch or change her expression one iota. She did look down at my chest, and since I’d already done this: (SAME THING,) I felt I couldn’t just start daydreaming again, I had to engage her. I touched the embroidery that some lily-white racist hands had so lovingly stitched decades before, and I said the words: “They’re farmers.” I said them. I was on some of the thinnest ice, morally speaking, that I had been on since I’d been caught shoplifting a bikini at the mall when I was twelve, but I said those words. The top layer of my brain kept telling me that since I thought they were farmers- and I genuinely had, it was a first thought when I saw the thing hanging by it’s lonesome in my family’s summer home closet- then any tiny stain of racism was washed away. I was confident in my own white lady thought powers, the simplest of these being that if I thought something then it was true.  

This woman wasn’t convinced. She re-settled herself, tucking her arms together even harder and making her face stony, and I squirmed. If I can be easy on myself for anything in this entire scenario it’s that I didn’t think it was her fault for making me squirm. The commute continued like that and my magical thought powers tried to help me, like a sinking freighter ship pulling a swimming passenger down with it, by throwing up different scenarios, ways this interaction might be less icky. I imagined us talking and me explaining that I’d found it at the family summer home at Seaside Park New Jersey, ever heard of it? Oh you have? The cinnamon buns at Park Bakery are the best on the whole Eastern Seaboard, don’t you agree? Or another scene: Yes, I’m sorry if this offends you but it’s really not a racist shirt- I think that perhaps the bias here is in your own eyes, no offence. Ah, now you see what I mean! Or another: Fine! Even though this shell isn’t racist because I am definitely not racist, I will tear it from my body and throw it in the garbage at my stop, will that satisfy you? You want me to take this shell, it’s called a shell god damn it, and just throw it out, which will deprive me of the joy of wearing old stuff? Fine! (In this last one I even managed to picture myself tearing the thing off and glaring at her, a bit of prime time soap opera on the Red Line at 5:30 PM.)

But what happened was that I sat there squirming, she sat there glaring, and the stops went by very slowly. I kept hoping that we’d come to hers and she’d have to get off and I could return to my pre-racist-shirt daydreams, but she stayed on the train because she lived further north than I did, or just to continue staying under my skin. I tried to meet her eyes once or twice, and each time hers were the same. They were hard, impenetrable, and they were tired. The tiredness was layered over her whole face, not just her eyes; still, she didn’t stop. Her tiredness reminded me of my own: I was dealing with my own fatigue from lack of quality sleep that comes from being in constant pain, and also undiagnosed other stuff. And since her tiredness looked so much like mine felt- the tension in the brows are all about how we hold our heads when we’re just starting to get the inevitable fatigue headache, the lines at the mouth are all about how, when you’re exhausted, everything seems humorless- the sinking ship of white lady thought powers went all the way underwater. I wondered how many things she saw that were reflections of the US’s institutional bigotry per month or per week or per day. I wondered if she talked about those examples when she got home to her friends and family, sitting around a table with food or sitting on the couch in front of the TV. I wondered how much eye-rolling and grim storytelling she had to repeat, had to endure, all the time. I didn’t wonder about her safety...yeah, it was too soon for me to start grappling with the facts of this woman’s real life and how for as much as I got catcalled and harassed she was catcalled and harassed twice as much, just for starters. 

In my memory now I did the only honorable thing I could have done, which was take the shirt off, slowly and with as little attention as possible so that this woman might know that I was removing it for her peace, not for any after-work street theatre fanfare. I can see her face softening as I unbutton it, take it and fold it and put it in my bag, feeling too bare in my camisole even though it was very hot and no one cared, not even the catcallers. I can see a tiny grin form on her mouth and a sense of satisfaction come over her almost bodily, which makes me relax. I can see myself relaxing, leaning back on my shaped plastic Red Line seat, having achieved some semblance of grace. It’s a false memory. My white lady thought powers are like the Flying Dutchman now, sending up these shimmering visions for me to chase, as if there’s some hope of pulling that vessel out of the deep by willpower alone: You’re not racist, it says. You were never racist. 

But I am, and I always was. There are shades of it. I never spray painted racial insults on anyone’s home or community center, I never raised any boys to spit in the gutter when they see a black person, but I looked away when those stories came up on my phone or before that, on the news. Always, those stories on the news that described spitting and insults were leading up to some bloodletting; I looked away. I always was. 

To the woman on the train with the righteous eyes and the formidable emotional strength: thank you. You made me feel really uncomfortable on the train once.

In The Pool

(Note: I’ve used the pronoun They/Them to describe my child in this piece. I’ve capitalized those instances for clarity.) 

So my child was standing at the lip of the park pool, along with a group of about a dozen other eight and nine-year-olds. For the previous six weeks they and the others had been in it daily, practicing their Australian Crawls and Dead-Man Floats. Also there was choreography that had been the focus for the past week. That bit involved a lot of standing and putting one foot in a hoop on the ground on the pool deck, and then pulling the foot back, and then moving into the hoop and clapping once, and moving out of the hoop. The baker’s dozen of them had finished the pool deck moves and were supposed to be getting into the water. 

The noise in the room was verging on incredible: Not only were there parents with tripods lining the big tiled room, moving their creaky metal folding chairs and talking, and not only were there camp assistants and life guards yelling instructions at everyone, and also more kids waiting for their deep-end display, there was music, and it was fucking loud. My child’s group had the indignity of having to swim in unison and in neat rows to “Tonight’s Gonna Be a Good Night” by the Black Eyed Peas. To compensate for the crowd noise, someone had turned the music up so that the reverb could be followed as it bounced from one end of the almost hundred-year-old pool deck to the other. The back wall had been demolished a few years before to transform it into a movable glass enclosure, and those panels were open to the brilliant daylight. It was dazzling, and the audience was constantly shuffling around with their cameras and their whispering. I was sitting upstairs, where it was more humid but less crowded. I watched my kid, the others watched their kids. I could see that mine was barely holding it together by Their fidgeting hands and feet, and Their tense, inward expression. I could see how hard it was to just be standing there among all this tremendous noise and air and intent, much less moving in time. I told myself that it was inevitable that They would run for it. It didn’t occur to me to be angry about it or embarrassed: It was all I could do to sit there myself, and I was safely on the balcony. 

The pool guard whistled and my kid's group all jumped into the water. Once there, the kids held onto the sides and kicked then flipped over and kicked again, which mine didn’t do. I started to collect my things so that I could meet Them when They flung themselves up and out. I wanted my lovely child to run but not cry, but I expected that They’d do both. As we watched, though, my offspring stood still in the middle of the shallow end, where the group was getting ready to swim in lines. The group leader tried to get mine to move but They stood easily, the tallest in the section. I saw Them smile beatifically. Then They started to lip sync “Tonight’s Gonna Be a Good Night.” 

The child got Their arms into it, gesturing while the pool mates adapted, as if this was planned the whole time. The two assistants in the pool with the rogue swimmer, tasked with wrangling the entire camp population, made a few passes at getting Them back into formation but not very hard- there were other small people in the water who were in larger danger of drowning, so they focused on that. In a few seconds- five, no more than ten- my only child was the star of Their very own Esther Williams movie, complete with supporting swimmers and contemporary soundtrack. I stood up to get a better look: They were smiling at all of us, welcoming, so happy we were there with Them in that moment. 

I couldn’t see as well as I needed to. Some audience members were reacting: a few people were pointing, there were smiles on previously bored or annoyed faces. I decided to risk losing a few seconds of my only child’s moment to run downstairs and get a seat near the back. The song changed and my kid changed with it, mouthing every word perfectly, waving their arms around like a contestant on Ru Paul’s Drag Race. The other kids did a different stroke, my child held Their spot in the center of the shallow end, the older kids were given the signal to dive into the deep end in pairs. A few in the audience clapped along, and a few of the kids waiting for their group’s turn started to sing along, even though they’d been instructed not to. I’d brought my camera but I decided after a few fuzzy far-off pictures to just let it go so that I could watch this amazing, clever, perceptive, inspiring young person own their overwhelm: my kiddo has ASD. 

Having ASD means that everything carries the possibility of being too much, literally too much. Those on the Spectrum hear the buzz of fluorescent lights so keenly that it’s like a needle in the ear, and things that smell just a little rotten can make them throw up. This isn’t just being sensitive: the world of someone with ASD is a much more intense one than the world the rest of us live in. A lot of people who aren’t in the ASD community already know this; what most people don’t know is how long it takes someone on the spectrum to de-escalate from that state. It can take days or weeks to come down from an event like the camp’s pool show. The emotion that level of life invokes takes days to come back to the normal level of intense that many ASD kids feel constantly, and it’s a rare kid who doesn’t get physically ill from it, having to deal with stomach cramps or opportunistic viruses or migraine or all of those at once. Talking about it to other parents, even supportive ones, who don’t have neurodiverse children is grueling, because just telling them makes you look like the worst kind of stifling parent who wants the rest of society to provide comfy couches in all corners and forgive those children for their yelling or hair-pulling or whining or need to lick everything they see. The short response to that is Yes. Yes, I do. Make with the couches, community! Provide quiet corners in every classroom for the overwhelmed to retreat to, and a fridge for the gluten-free smoothie they need to drink cold! It tones the Vagus nerve, dammit! I don’t ask for this shit lightly- no one but the family of an autistic child understands how much focus is pulled from regular life, no one- but everything I ask for is, really, better for everyone. Who doesn’t need a quiet corner with a bean-bag chair for decompressing after a tense Skype meeting with the boss, or some special smoothie after being trapped in an epic traffic jam? So let’s dim the lighting in public spaces like malls! In fact, let’s tear down the malls and plant woodland parks instead, and populate said parks with the kinds of furry creatures that make humans smile, like bunnies and shit! And what I find most profound about these needs is how they are basically the needs of the planet, now. Those quiet spaces and wild spaces and places with sensitive planning that allow everyone- EVERYONE- the freedom to be alive and well are what we as a species should have been making with our busy little hands all along. 

The autistic kids have been right the whole time. 

At the pool, the songs ended and my kid’s group got out. When mine got out of the pool some of the adults clapped, and they half-turned and waved. I waited for everyone to take their turn, patient as a tortoise, and when it was finally over and the clapping sound was bouncing back and forth so loudly that I couldn’t hear the person next to me when they leaned over to make a comment, I looked for mine. They were nowhere- They’d obviously skipped out on the part where They had to sit on the concrete deck and watch all the older kids go down the slides. I went around to the bigger outside deck and found the offspring in a corner, scratching at the ground with a stick. 

“Hi, honey,” I said, touching Their shoulder gently so that I didn’t startle Them. 

“Mom!” They cried, but didn’t run into my arms as They did when they were happy. “I’m sorry about singing in the pool-” and I hugged Them, trying to make Them stop feeling like They had to apologize. A part of me wanted to cover the kid’s mouth with my hand so that I didn’t have to hear it, because They were already spending too much time doing that when all They’d done was deal with Their environment, right? 

“You were amazing,” I finally got to say. I relished my beautiful child’s face as it changed from worried to delighted- I watched the anxiety dissipate like it was CGI mist. There was still music playing. I don’t remember the songs, but I do remember that we danced in the sunshine and we sang along to them, mumbling where we didn’t know the words, not bothered in the least. Catastrophe had been averted, so now there was dancing. I thought of the planet, of the humans, of how much we had to learn.

Sleep, my Demon Lover

I think I may have Stockholm Syndrome. I always want to rush in and defend, or coddle, or just smile at my captor, beaming my adoration. I count the hours or the minutes. I think about it when I'm with others who normally please me or who depend on me, and pay almost no attention to those who're both, such as my family.

"Uh huh" I say to my daughter, who's going on about the story line of some video game or the YouTube channel that makes fun of the same. "I can see how that would be funny" I say sometimes, but really I don't see and I don't care that I don't see, because all I want to do is fall into the arms of my lover Sleep. It's waiting for me, and I can almost see it when my vision shimmers and one of my eyelids start drooping, which should be terrifying. It is terrifying, except you don't know Sleep! It has so many great qualities!

"MOM" yells my only child, who's got her own problems. The nascent guilt that shows up when she does that startles me- I thought I'd thrown all of that stuff overboard- and I wake up again. "Why don't you just go to bed?" she asks, all Reason and Pragmatism. No, I say, I have so much to do; I have to help you most of all, I say. My daughter makes a face: she knows this argument, she's made this argument her own at school when there's something she is being tasked with that bores her. "I have so much schoolwork to do" she tells her Teacher, then Counselor. She takes the argument as far as she can within the hierarchy, which is not how I intended to influence her: I was all "this is what hard work looks like, child" but my body was all "Jesus get out of my way I'm going to literally fall asleep, as in fall down". But lately that's...ok. The fact that she's only getting maybe half of my effort is not as dire as it was before, it's just not really present when I'm super busy looking into the eyes of Sleep (they are a dreamy blue, a puffy-cloud sky sort of blue.) And Sleep's shoulders? Ah god, I could lay in them for days at a time...

Speaking of dreams, mine are streaming. I only have to be quiet and close 'em for two seconds before the reel begins and I'm somewhere else, with someone else. In these during-the-day-dreams my new friends and I are always looking for some ill-defined thing. The thing is so ill-defined that I don't know if it's an object or an ideal we're supposed to find! Whatever: I can look for this thing (or not-thing) for hours, and my mind is always aware that dreams aren't supposed to last for hours. Nope. They are meant to be smaller things, more manageable states of consciousness, but ha ha. I get to dream for hours sometimes, if I've surrendered into Sleep's demanding presence, and my dreaming brain somehow sends up the message that this is weird, this is wrong, I was in bed for nine hours last night...

But now I want it. I want sleep, I want Sleep, I'll take both or either. Sleep is so gorgeous that I think about it within minutes of getting up, coffee in hand. I'll think about it while I'm driving. It's so dangerous- thinking about it is the same as saying the Demon's name aloud three times- and I nod behind the wheel. To stop this I have to slap my own chest repeatedly, and really hard. I can do the same to my thigh and the sting lasts longer. Pain reminds me to stay awake and also reminds me that my fascination with Sleep will get me killed, or get other people killed. The small part of my mind that can work it out logically will insist that this be the LAST trip in a car that I captain, and I agree. But I still drive, just infrequently. Once a week, twice- still too much. I'll hire a professional literally the second I win the lottery, which I don't play but the principle remains: the second I win, the very second, I'll pick up a phone and tell someone on the other end to hire me a really good driver who has an encyclopedic knowledge of where to get the best decaf latte in any three-mile radius and has a really good fashion sense. This driver of mine will take me to the latest vintage garment auctions, where I'll manage my lassitude with full-caf tea and a willingness to engage to almost any amount of currency over the right embroidered velvet caftan (I'm rolling in it, right?) And said driver will know when I'm over-committed in adrenaline and will pull me away with some vague promise of fresh pastry in the back seat, only to push me backward with just enough force to make me supine.

"Goddamn it, Ingrid (or whatever)!" I'll say, trying hard to not feel the lightness of my limbs or the fuzziness of my vision. "There's no pastry back here-" I'll manage to say, right before my lids crash down again. My driver knows me- this isn't any kind of betrayal, it's an act of kindness to push me onto some cushions when I won't do it myself (perhaps I'll need a caravan. Any driver of mine will need to know how to drive vehicles that are carrying king-size beds inside them.) And when I open my eyes again, I'll ask how it went with the auction.

"Ingrid," I'll say (I'm going with Ingrid.) "Was I driving the cost of a beautiful 1920's ruby velvet cutout-shoulder formal gown at that last gig? Or was I dreaming?" And Ingrid, who is fast becoming my new favorite personal fantasy, will just smile. Then she'll hold up the gown, on a hanger and in protective cellophane, along with a bag of almond croissants in her left hand. She'll keep her right one firmly on the steering wheel.  And in all probability I'll promise Ingrid a raise, but only whisper it before I notice my lover Sleep right there next to me in the back seat. "Were you here-" I manage. I meant to also say "the whole time". Sleep looks at me with its' giant, soft, speckling-and-unspeckling globe sized eyes and I'll know the answer was Of Course. The whole time. Of course.

I hate/love sleep. I love/hate Sleep. I wish I knew how to tell the difference.

Spectrum! The Musical: Rehearsal Diary.

I still didn't know who to cast as the lead. It was really difficult, in that every cast member so far was non-compliant or non-verbal. Naturally the verbal ones were the least malleable, which is an understatement. The verbal ones were non-compliant on principle. Two of the verbal cast members refused the acknowledge that they had legs: they would only roll into rooms and looked at a person with poison eyes if it was suggested they could stand if they wanted to.

"Clearly you're not noticing that my legs have been amputated just below the hip joint. That is very rude" said Caleb. He was a handsome lad of about 16 whom I had thought might make a good Jake the Wonderful in Spectrum! But perhaps not. There was still time to decide. If there's one thing that dealing with Spectrum youths taught you, it was that there was always time- it just wasn't yours.

I sighed. Two others- Kit and Malinda- also sighed, then watched for what I would do next so that they could imitate it. Malinda was the one who came with the mimicing trait but Kit was catching her up, to the point that Kit could now anticipate what Malinda would mimic next and mimic it herself just a half-second earlier. It made Melinda furious, and she'd run around the room disrupting things like scripts and extra-thick pencils and the Play-Doh station, causing the remaining cast members to divide themselves into their usual camps: Join-the-Chaos or Run-Away. It was roughly halfsies in this family-to-be, which was good. Part of my brain was convinced that we could run two rehearsals, one for the real musical and one for the fake one, by simply having the Run-Aways produce their own shadow show at the same time as the real one, only in the basement space of the old St. Emmanuel's School for Unresponsive Boy-Children (not it's real name.) I imagine I can have them perform it without actually having anyone see it, which is the real sticking point for the Run-Aways. They would express that very point whenever I mentioned certain things, like "audience" or "show night" or "performance" or "people" or "thinking"or "cast" or "curtain time" or "musical" or "dance".  "Jazz hands" were an acceptable thing to say, as long as you didn't mind the entire group flipping their hands around like epileptic dolphins for up to a half-hour. They all looked ridiculous when a strong round of Jazz Hands was collecting their normally scattered focus, but then again they didn't look half as ridiculous as a stage full of professional performers doing the bona fide Jazz Hands.

"Ok, lets work on the opening one more time. That's a good place to start, right? The beginning." I said this in my best Jody the Tour Guide voice, as I've found it's the least offensive tone to the largest amount of cast members (two.) Sometimes when I use that voice with them, no one interrup-

"Technically the beginning can be anywhere along the storyline. It doesn't matter where one starts but how well the story is told and how well the narrative circle can be joined. For instance, if you look at episode twelve of season 4 of Doctor Who, modern, it starts at almost exactly two-thirds of the way through what becomes the full narrative of that episode." says Jolene. I nod, of course, because I want to do the opening one more time, but Jolene's best friend/worst enemy (depending on how much they talk about their favorite television show) has something to say.

"Bullshit! Bullshit shut shit bullshit Jo!" Apu yells. The non-verbals pull their heads back in under their tables, which is a shame- it was the first time they'd put any body part outside the protective shade of the craft table in over an hour. But Apu is a yeller- he, like many with ASD, is loud even though he doesn't hear it that way. His personal volume calibrating mechanism just doesn't work like...it doesn't work, is all. I've gotten so used to it that when the group goes outside our protective doors to procure more snacks or for the obligatory fresh air (my idea, their obligation) I end up yelling right along with Apu. I've wondered if it's really that it's my volume control that's wonky rather than his- a common reflection about all kinds of Spectrum traits, if you stick around. You can't help it. For example, I never used to list chapter and verse of any specific puzzle. I was the talker, keeping it terse and cordial and not feeling the need to remind the listener that a "terse and cordial" was a non-alcoholic drink from the early 20th century that was made of seltzer, liquified hay, blueberry gin, and two scant teaspoons of earth from anywhere in New England. The best part (or the worst, really) was that I don't know how I know that. All I know is that now anytime anyone says anything banal, I roll my eyes and think "How banal."

Banal conversation didn't used to bother me before I started my group- it was just a given of any regular, day-to-day day.

Kit and Malinda were waiting for my next utterance- Caleb was rolling back and forth with a faint smile on his handsome-lad face- Jo and Apu were in one of their daily arguments about story structure and how it related to television scripts versus blog posts- the non-verbals were under the table, a few eyes peeping out to look at me, waiting for me to ask something of them so that they could pull further back into the shade. It was clearly time for me to take charge, to make them all understand that I was the one who had authority in the room, and that there would be some sort of consquen-

"Just because I don't have legs doesn't mean I can't play Jake the Wonderful. But I think he should be named Jake the Legless, for obvious reasons" said Caleb. He was not rolling, looking at me with very serious eyes (everyone in the room, even the under-table peepers, could make Very Serious eyes at me like they'd studied at the  London Academy of Dramatic Arts before joining my group. I didn't know, but I suspected that there was some secret conspiracy to that effect, where those who'd been diagnosed as being on the Spectrum were sent away for a weeks-long intensive from Sir Ian MacEllan on how to throw Very Serious eyes. I suspected Sir Ian was a big softie for the ASD folk.)

"Thanks, Caleb. Jake the Legless is a better name. So if everyone could move to their places-" I said, being careful to make sure that the peepers didn't know I was watching them, I moved back into position behind my keyboard. "Then we'll start at the top. Everybody ready?" There was a cacophany of noises to let me know that they were, as far as anyone could say, ready. "And one, and two-"

"PRIME, PLEASE" yelled Jolene and Apu simultaneously.

"Start at the fouth integer" said a voice from the under-table dimness. I didn't know which one said it so I was impressed with all of them.

"Sorry!" I said. "And five and seven and eleven and thirteen-" and started playing.                                                                    

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?