Tag Archives: autism

Excerpts (a poem, maybe?)

17 Monday Jun 2019

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false_hope_by_astridle

Excerpts from reviews of my unpublished book

… She goes through the mill, all right. No surprise there for fans of such stuff—in Britain they call them “Misery Memoirs,” and demolished mums go mad for them. What is this trend about, anyway—all these haunted women sharing stories with women similarly haunted? When you’re dry to the bone, why crawl out to visit a neighboring desert?

… There seems some universal need for—let’s call it “paying witness.” Which Coughlin does well. She tells the story of her autistic daughter’s life and death with style and wit. It’s really not her fault that we already know the story, thank you, and don’t need to hear it again.

… To quote Ms. Coughlin, “You can’t spell ‘poignancy’ without ‘Nancy’”—and that at least seems true. This book is relentlessly poignant. Every thought this writer has seems blackened at the edges, charred by pain. Even when she’s funny—and believe it or not, she can be quite funny, often at the very moment the ground is collapsing beneath her—a subtle wince behind the prose betrays an unquellable trauma.

… This is the sort of book that should be wrapped in satin, placed in a box, tied with a bow, and cached in an attic for some curious granddaughter to reopen one day, and to recognize.

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Abbreviated (a poem)

19 Wednesday Jul 2017

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Abbreviated

When making lists, I once wrote “He.” and “Ha.”–
instead of merely “H.”, as I do now.
This luxury of brevity
weighs heavily on me.

First to quaver, mid-list, is the pen.
Its wince shoots sirens to the hapless brain.
(I feel it first. It’s only after
that I revive my daughter.

Or she kills me, it’s either way the same.)
I see her then, in flashes—like the time
she danced out on the roof edge, or
escaped the moving car.

My husband, Henry (hence the “He.”), can’t hear
me in this place I’ve gone. I glimpse him there–
outside my gasp, inside his jar–
then grab for Hannah (hence the “Ha.”).

mother child

win/lose (a diary entry)

08 Thursday Jun 2017

Posted by in journal entry, random thought, zen

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pig guitar.jpg

June 8, 2017

I played guitar today. It thrills me to see myself getting better–not great, not even “good” yet, really– but that’s not the point. The point is just to play better. As with my whole little life these days, I’m not trying to “win” anything anymore, and in fact I don’t know what in the world would be worth trying to win. Besides love, I guess–but the way you win love is to give it, which is simple enough once the ego shuts up, and hardly worth worrying about. Everything else—everything, yes? Everything else is a game. And maybe love’s a game too, I don’t know. Love’s just the horse I rode in on, and she’s served me so well that I’m bound to ride her home again.

So with love’s possible exception, everything’s a game. But you’re not there to “win” or even to “lose.”  You’re only there to play, and if it’s a fun game, like playing guitar, “losing” is a precursor to, and forever concomitant with “winning”: you might as well think of them as inseparable halves of the same activity. With a game like guitar, I’m working hard to beat my best score, but if–every other minute or so–I didn’t fail at that, I probably wouldn’t find it worth the effort. It’d be like, say, driving—a game I’ve mastered well enough, have no reason to “practice” for its own sake anymore, seeing as I’m not likely to get any “better” at it by staying late after school. Driving, therefore, is for me a simple, useful, but rather ordinary game. Breathing too: I imagine I’m about as good now at breathing as I’ll ever be. Hell, for all I know I’m at the utter peak of my aptitude for breathing, and it’s gonna be all downhill from here.  But guitar—oh, there are so many levels I haven’t gotten to yet, and then too, there are a few levels I have finally reached, plus many more I can glimpse just a few yards up the hill. Yes, but even the view from right here is breathtaking.

Amazing how fulfilling it is just to play the games of life without needing them to “mean” anything. In my roles as a game-player, singer, writer, a friend/wife/mother/human, etc., I’m always just trying to beat my best score. Lots of times I fail—that’s how a fun game works—so then I push “reset” and start again. The trick—my wisdom of the day–is to stop making the same old mistakes. You can’t get anywhere new that way, as I see it. No, if you really want to beat your best score, then you have to start making brand-new mistakes, and lots of them.

The other trick is not minding the obvious fact–once you think about it for even a second—that all your wins and losses are small and temporary and have barely even the meaning you give them yourself. It’s not—I used to think it was, but don’t anymore–that in the end we all “lose” (picture Trump’s gold-plated coffin). No, I have a feeling, these days, that there’s no end at all. Or that whether there is or isn’t, I myself will never know, so I might as well relax already.

The Myth of Solid Ground: a synopsis of my memoir

30 Tuesday May 2017

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The Myth of Solid Ground: a synopsis

My aim was this: to write the book I longed to read back then, some twenty-five years ago, when Hannah was first diagnosed. There was no internet then, not like now, and the few autism books I could find fit into one of two genres: dry medical texts and anecdotal “miracle memoirs.”

The medical texts worked hard, with their studies and statistics, to mask the fact that science knew (and knows) little more about autism than I did (and do). I couldn’t have discerned that fact back then, of course—and, who knows?—maybe I wouldn’t have wanted to discern it, then. When disaster happens, after all, the first thing you long for, once you can breathe again, is rescue, which, unless you believe in magic or God, would seem to require human expertise. By spending Hannah’s first three years thinking everything was just fine, I’d handily proven my own incompetence. No wonder I deferred, then, to doctors with clipboards, who, with one word, replaced the daughter I thought I knew by heart with an inscrutable enigma: an alien, a machine, an aggregate of symptoms and “behaviors.”

No wonder, too: the rise of the miracle memoir. These books, most of them written by parents who’d fallen through the same dark fissure that had trapped my family, countered the bleak forecasts of medical texts with warm, human stories of hard-won victory.

For this was the era we lived in then. We were, at long last, past the nightmarish age when we spoke of “refrigerator mothers” whose everyday remoteness forced their children into hiding inside stony, silent fortresses of the mind. No, by 1991, the year of Hannah’s diagnosis, we no longer believed that mothers caused autism. What we believed, instead, was that mothers could cure it.

The method of the miracle varied from book to book. Some parents cured their children through a dramatic change in diet, some by megavitamin supplements. Auditory Integration Therapy did the trick for a few kids, while other parents swore by facilitated communication, or chelation therapy, or the magical powers of hyperbaric chambers. Some parents rescued their children via sixteen-hours-a-day, one-on-one behavioral therapy. Several children simply cured themselves, through tireless, undaunted acts of will.

“Can Autism Be Cured?” was the title of a Woman’s Day article my mother sent me in 1994, but by then I already knew the answer, which wasn’t just “Yes,” but “Of course!” The article’s tagline says it all: “From birth this zombie-like girl seemed hopelessly unreachable. Then a simple two-week treatment turned her into a normal young woman.” (And even as I type it out again, that last, triumphant sentence breaks my heart, just a little, one more time.)

For this was what hope looked like in those days, in the era of the hard-earned miracle. The bright half of a false duality, hope rose from a desperate parent’s denial of despair. For me it was a torturous up-and-down cycle–a runaway merry-go-round I finally had to leap off, mid-whirl. I had to learn, through the course of years, to believe in neither thing—not despair, but not hope either. By now, in fact, some ten years gone since Hannah died, I seem able to engage with the world only as it presents itself right now, with whatever might be tangible or provable or present. It’s my life’s deepest lesson, so far—this surrender to the starkly here and now. And it was Hannah who taught it to me.

She never spoke to me, of course–not even in my dreams. Nor does she speak nowadays, but neither, of course, does she need to. Timeless, now, in picture frames and in my heart and mind, she grins, forever my laughing Buddha, and I’m starting, I think, to know what she means. Or perhaps what I realize is that she doesn’t mean anything, she just is, and that’s the point. But I’m getting ahead of my story.

Hannah was born in 1988, to clueless parents who nonetheless thought themselves clever. Trapped already in the fierce and ridiculous melodrama of our marriage, surely Henry and I had neither right nor reason to enlist a third actor. Yet, oh, how deeply into love I fell, when Hannah joined the play. How I studied her—how she and I studied each other. How small the world beyond ourselves became. How quickly her joy became, for me, the only joy that mattered.

As I write in the book: “In our early days—those first three, pre-diagnosis years—Hannah seemed, if not exactly transparent, at least no less knowable than anyone else in my life. Indeed, I believed—and perhaps it’s even somehow true—that she was the person I knew best, back then, and that I played that part for her too. We were the centers of each other’s tiny worlds–yet so often I can’t remember that anymore. I tend to think, no, no, it was mainly my breast she wanted. Whatever else, who knew? And there’s something true-ish about this, in the sense that Hannah and I lived primally—like primates, I mean–in those days. The baby gorilla, as she suckles, gazes up at her mother’s eyes. The mother gazes back. In this brief moment, which will somehow last forever, they are mutually enthralled. This is love.”

How often, in the hard years of Hannah’s growing up, did I worry that that bond of love had broken, or—much worse—that it had never been “real” in the first place. Yet time after time, through the course of years, if I paid close attention, I’d glimpse that bond again.

Again, from the book: “I think gently of an early Sunday morning in the fall of 2003, when Hannah left the house in only her nightshirt, and raced away down the street. I quickly followed her, in my own nightgown and slippers, to her favorite park a block away. The day was warm enough for me to perch atop a picnic table there, pondering the anatomy of acorns, as meanwhile Hannah reeled, in her old rubber swing, from sky to sky. When at last she was ready to return to the house, she nonetheless held back, frustrated, stiff, at the edge of the grass, and I remember, as well as any fine moment that day, the thrill I felt when, at last, I guessed the reason: that the nuts and pebbles dappling the sidewalk and street, hurt the tender bottoms of her feet. I sit here thinking of that moment again, wondering if I can ever explain the joy I felt: the miracle, the bliss of discovering, at last, a problem I could actually solve. I took off my slippers and put them on Hannah’s feet. She laughed—elated as if by a magic trick—and, happily, agreeably, we walked each other home.”

Yet my daughter’s life was turbulent, from the beginning. What’s more—this is an autism memoir, after all—it got harder and harder as time went on. Yes, and suddenly I find myself wanting just to leave you right here–to say, as politely as possible, “You want details? Read the book.” Because I honestly don’t want to tell it again—no, not the merest example or detail. Because that’s why you write a book, isn’t it, so that you can close it, afterwards, and never have to say another word?

One way of seeing our lives in those days: as one long and rarely interrupted state of emergency. Though I hardly knew this at the time, Hannah was what people call a “difficult” baby: fitful, sleepless, often wailing, for reasons that were hard to figure out. She nursed till she was five. She didn’t sleep through the night till she was six (and dosed with Trazodone). Moreover, and increasingly as she grew up, Hannah had bouts of what seemed to be an intense internal pain that no one who worked with her could ever understand, much less alleviate. She banged her head against walls, she bit her own hands, she shrieked and howled, sometimes for hours at a time. Soon she began to turn her frustration toward the people trying to help her—she rushed at us headlong, pinched and bit and rammed her head against us, bent our fingers back, strangled us from the back seat of the car. Her rages grew more dangerous as she grew older and stronger. The toughest times return to me, today, in vivid flashes: locked inside the bathroom, I sit on the floor, bracing my back against the flimsy door as Hannah hurls herself against it from the hallway. The wood arches inward, a wind-billowed sail. Knowing how soon it might fracture, I scan the room for something I might use to deter attack. Shall I throw a towel over her head? Or fling a dixie-cup’s worth of water in her face? If I sprayed air freshener at Hannah, would it hurt her eyes? Would it even slow her down? Would it only enrage her more?

But if this were the full story, I’d hardly have bothered to write it, because any parent who needs to know such harsh particulars has already learned them, with no need for anecdotal reminder. I’ve met so many of these parents by now. Our lives have intersected in support groups, conferences, blogs, real life. Together we form a beautiful, fallible, self-lacerating tribe. By our trembling hands, our haunted eyes, our facial tics, we recognize each other.

Hannah’s rages (if that’s what they were, and not merely what they looked like) reflected only part of her. To know my daughter fully, you had to see beyond your own bruises, and even then, the crazy truth would take you by surprise and you’d believe it only fleetingly. Only once the play ended—when, abruptly, at seventeen, Hannah died of an epileptic seizure in her sleep—and you suddenly had enough quiet (too quiet!) time to think, only then might you grasp the truth you’d only glimpsed before: that all this time you’d been seeing your life upside-down. In your role as Hannah’s teacher, you’d been miscast: you were meant, instead, to play her faithful, if slow-witted, student. As I write in the letter that forms the last chapter of The Myth of Solid Ground:

“It’s amazing, Hannah: your effect on people. What drew them in every time—it wasn’t pity. No, you seduced us instead with what I want to call—don’t laugh—a rare charisma. Do you get what I mean? You startled us all, and kept us startled for years, with the stark purity of your innocence. No matter the moment, you were guileless, sinless, unsulliable–as fully exempt from corruption as the Virgin Mary. No wonder we loved you so dearly. No wonder we took pride in our scars. No wonder we couldn’t help but become, around you, like those ancient tribesmen who’d have regarded you as a spirit guide, a shaman, a gift.”

When I started writing The Myth of Solid Ground, I felt so cockily sure that this wouldn’t be another “miracle memoir.” And now that it’s finished, imagine my chagrin—and my wonder, my dizzy relief–to find that Hannah’s story overbrims with miracle, from start to finish. But how was I to know this, way back then?

I sought to write the book I’d longed to read in those hard days—the book that would tell the bare-knuckle truth, let me bear witness, help me heal. And here, to my amazement, it is.

 

love to a mom whose blog I just read (from my memoir)

09 Tuesday May 2017

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“To those who may be new to the business of maternal regret: you’ll have to give it up, I think, eventually—if only to calm the gentle friends telling you that no, no, you did the best you could, no one could have seen this coming, you were a great mother. It won’t be an easy surrender. In the first place, forget “great.” Try saying just this, right out loud: “I’m a good mother.” Never mind that you stumble, that you want to change the word “good” to “adequate,” or “not too bad,” or “better than my own mom, anyway.” That you itch to slip in at least a “maybe” or a “sometimes.” Dilute the statement as your shame requires—but only in your mind, and no longer aloud. You’re trying to soothe people, after all.

“Nonetheless, you really will let it go, eventually. I don’t mean the guilt, necessarily. No, for all you know, the guilt will always ebb and flow, in accordance with lunar whim. You’ll get used to it. But what you will surrender, eventually, is the notion that your guilt makes you exceptional. You’ll discover, in fact, that it reveals you merely as a member of a beautiful, fallible, self-lacerating tribe. After all, when in your life have you met any woman willing to admit she’s a good mother?”

–excerpted from my memoir, The Myth of Solid Ground 

two diary entries, 12 days apart

03 Wednesday May 2017

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me in my muff

April 4, 2017

Yesterday a call from the hospital that I need to retake my recent mammogram because there may be something weird happening in the left breast. They’ll do the retest next Monday. It was the soonest time, the woman said, and when I stammered my disappointment, she told me not to worry.

It runs in my family. Or maybe it just walks, I don’t know.  My mother got it in her fifties. The doctors removed her left breast—just like mine, I think in sudden solidarity!– and she survived into her nineties before the cancer returned only to discover there was little left to feed it. And my sister Diane, I think. It shouldn’t be such guesswork–knowing if your sister had cancer or not—but that’s the sort of family we are. When we’re sick we’re like dogs. We crawl away, beneath the porch, and don’t want help. Still, I think Diane had breast cancer, but they “caught it in time.”

Something very tedious already about all the clichés attached to this. I wonder if I can get away with skipping them, in favor of fresher feelings. E.g., do I have to say that of course “it could be nothing,” yeah yeah yeah? That we’ll just have to “wait and see”? Or that even if it is cancer, surely they’ve “caught it in time”? What about how the treatments are so much more effective these days, how it’s amazing what doctors can do?

(Glibly:) I think I can handle anything but the clichés. There were so many during the Hannah years, you see. [Hannah was my first daughter. She was autistic.] What do doctors know? Maybe she’ll grow out of it. I see progress!

But I’m getting ahead of myself. All I really know right now is that if this isn’t the life-changing moment, then that moment will simply come later, and maybe it will feel just like this, at first. What I feel: fragility. It’s visceral; I feel fragile in my bones, which I don’t normally even pay attention to. I feel made of thinnest glass. I feel like I should try harder not to bump into things all the time.

In my mind, meanwhile, I’m mainly just curious, for now. I don’t know what will happen, but it might be a fascinating, even a sort of “important” moment for me. But for now I can know nothing. So I put the mammogram-plus-sonogram appointment on the calendar, then live the day I’m in. I’m watching myself closely, but looking outward to do it, at the mirroring world. Colors are vivid, but maybe not more so than usual. Guitar practice goes on as usual, and in fact I found some songs I’d loved and lost, and I credited imker [my Netherlander friend now four years dead, whom I’ve invited to haunt and advise me as necessary] for letting me find them, ‘cause they were delightful. Then later I realized that I ought to let Mom haunt me now, for a while, because breast cancer is more up her alley than imker’s. So all right, I’ll hold tight to her through this.

Whatever this is.

It could be nothing.

————————————————

April 16, 2017

It was nothing.

But it haunts me—my god, I’m so hauntable—or, really, what haunts me is mortality itself. How crazy that I can’t just surrender to it. How crazy, how ordinary.

Mike Elliott died. Two days ago. He was a classmate at St Mary’s, who was very popular and smart and funny, and who liked me and talked to me between classes. We were never close at all, not even close to being close, but I liked him very much, and now, maybe a month after learning he had colon cancer, he’s gone. It seems crazy to me that this should be true. I learned he was ill the same day I learned I didn’t have breast cancer. Maybe only  because it’s that time of year, it feels like a Passover story. Death strolls past my house and into his. He was my age, Henry’s age. He’d felt no symptoms. He’d written me a couple of breezy emails just recently about my dubious role in planning our upcoming class reunion.

I’m sure other people from our class have died in the forty years since we graduated. I just don’t know who they are, and likely didn’t know who they were back then. But this guy—Mike Elliott. I didn’t really know him, of course, and I hadn’t seen him in years. But his death resonates because it’s so ‘untimely,’ and because he was always so fully alive in my mind and in his own, and because it seems he somehow represents my high school years. He was one of those lifeline people back then, along with Mike Radigan, Sue Duffy, Paula Morris, Aneida Jackson—that tiny set of semi-friends whose quirky minds I liked to be around, who made me feel a little more at home in that otherwise foreign place and time. Awful, that time. It really was, you know, for me. I could say it to them now, I guess. I think sometimes about doing that, using the “class memory book” I’m supposed to be compiling(stories from everyone, not just me) to come clean about how awful high school was for me, how ugly and foreign and unlovable I felt.

Thing is, though: I’ve gone through so much more since then. So much that was, for lack of a better word, ‘worse.’ Hannah. Hannah. [My daughter died twelve years ago.] My poignant little palindrome. High school was nothing compared to those days.

And right now as I sit here, I’m supposed to be writing something, or editing my agent letter. In honor of Easter Sunday, you see, I’ve decided to rise from the dead. Turns out that’s not quite as easy as it sounds.

I’ll write in this little journal. I’ll write things that don’t ‘count’. Huh, and note how I react to that notion: an anger rises. I find I hate the idea of things either counting or not counting. I hate the judgmental rigmarole—why do I have to be a famous writer, anyway? When I was six, I wrote because I loved it. I loved to write in the same artless way I loved to sing. I wrote, I sang, I dreamed the livelong day. It didn’t occur to me then to wonder whether what I was doing was important or glamorous or self-defining. I didn’t do it to impress anybody—not really. I didn’t even know writing was supposed to impress people–not beyond a round of applause for the school play, I mean–and I surely didn’t know it was supposed to be a competitive sport, not until the silly little shark pit that was grad school.

(Even now, the notion of a “famous author” still feels silly to me. Oxymoronic.)

Why do people want to be famous? Why do they even want to be ‘read’? History and common sense agree that it rarely makes you happy. Yet I myself have always been asked and have asked myself the contrary question: why don’t I want to be famous? Why don’t I care whether anyone ‘reads’ me? I’m the odd one out in this game. I’m the light hiding under the bushel basket. What people don’t ever seem to consider is that bushel baskets nest like matrioshki dolls, that when you come out from under the first one, you find yourself merely in the next one, just as dark and anonymous, but a trifle bigger and thus less cozy.

We’re all anonymous eventually. I don’t know why we fight it so.

Beside my bed there’s a picture of me at around the age of four. I’m in my snowsuit, my rubber boots, a hood tied by a string beneath my chin. I’m also wearing (my hands are ensconced within) my furry white muff. I loved wearing that muff—do they even make them anymore?—for the sweetest simplest reason: nobody could see what my hands were doing. Not that my hands were doing anything people would care much about. No. Johnson and Johnson—I named my hands after the baby powder—were just holding each other or forming a bridge or dancing or posing in prayer. All the same, their privacy was delicious to them.

I’ve always been that way. I’ve always loved cubbyholes and closets. The hiding place behind the water heater. The cave beneath the grand piano. I loved the park and forest trails most when no one else was there, and I could play out my save-the-world fantasies with purest panache.

I have an ego. A huge one, in fact. Honestly, I think I’m amazing. I just don’t seem to care much whether anyone else knows about it. Can that possibly make sense? That is, am I crazy, or is it everybody else? All my life I’ve lacked what they call ‘ambition.’ But I write the books, don’t I? I’ve written three books in thirty years. Thirty very distracting years, I could add (but won’t). Most people never write even one book, so far as I have noticed. I am who I am. The world (which by now is mostly an old voice in my head) expects more of me. The world wants me to come out from under my bushel basket only to entrench myself in theirs. Am I wrong to find that ridiculous?

Irony: if I let them go—all those voices urging me to want to be read—I’d probably write better, and certainly more often. The joy of it would be so much more full and pure. I don’t know why I can’t just follow my own path, why I always have to doubt what (I think) I know to be true for me. Next to the picture of me in my snowsuit and muff is a picture of Hannah—the iconic one, when she’s two and standing balanced on the folding chair. It’s only at this exact second that I realize how alike we look in our poses, how we share the same sly sidelong glance, as if we know a secret no one else would understand, as if we like it fine that way, as if we’re here but also somewhere slightly else–two smiling, dimpled girls content to be unreadable.

 

hannah

version (a poem by my daughter, Rebecca Gonshak)

13 Wednesday Jul 2016

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Two kids in the bath again,
me just a smaller version of you.
If you cried, I’d sing
like a miniature mother, Moonshadow
and Bye, Bye, Blackbird. No, I didn’t sing
Bye, Bye, Blackbird then. Oh well, all memory is a lie.
You used to run from wall to wall of the house,
but did I really run after you?
I’m older than you now
but I still feel like a version of you.
That’s an invention too, I can’t say what you meant
in your silence. But if I could go back to that bath
and our feet could touch, and you splashed
– I know you would splash –
I would sing and sing until I lost all words.

                                            Image

Meltdown #1 (cw self injury) (reblog)

11 Monday Apr 2016

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A great poem by Ellie Storm:

Amnesiac Optimism

one
Grinding whistling growing pressure

three
Like a kettle on the stove

five
boiling over

3
a rattling pressure cooker

1
screeching

3 5 3
My joints calcifying

1-3-5-3-1
Teeth grinding

3531353
Hair pulling

135313531353135313531
Clawing at my skin. Flaking picking bleeding stinging. Face scrunched up and gurning.

353135313531353135313531353135313531353
No sound. My body still except for the vibrating, clenching, grinding tension and the engine tick of my brain counting pyramids of numbers tapping them out to impose some ordered beauty onto an ugly discordant world that demands i look at its ugly but not react to it

13531353135313531353135313531353135313531353135313531353135313531353135313531353135313531353135311353135313531011010011001011044442222123454321333333333333333333333333333
HeadGettingSmallerCrushingMyBrainAsTheRoomGetsBiggerAndThere’sLessAirAsThePressureRisesAnd-I-Start-Hitting-My-Face-With-ThePalms-Of-My-Hands-And-The-Second-Knuckles-Of-My-Fists

33333333333333333333
and I see flashing lights and my legs give and I collapse on the bed

53135313531353135
and it’s soft

3135313
and I’m real again

5-3-1-3-5
I’m calm

3 1
I’m serene

3
and the world’s the right size again

five
And I’m crying

three
but at least the tears are…

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autism/cte connection? (a question)

06 Saturday Feb 2016

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A question hit me the other day: has much research been done on the likelihood of a self-injurious autistic child’s developing CTE (chronic traumatic encephalopathy)?  I find only a few, footnote-like mentions on the internet, which is odd because once it finally occurred to me, the connection seemed obvious, important, and–that rarest of qualities–useful. I need to learn so much more about this. Anybody have any thoughts? Thanks.  –Nancymother child

my latest notion (a poem)

02 Wednesday Dec 2015

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My latest notion

A website for Hannah,
like they put up for Santa
on Christmas Eve. We’d
track her soul’s holiday as, freed
from form, she strolls the universe.
Watch her atoms intersperse
with those of meteors!
Glimpse her changeless source!
In our old days, of course,
the web was bare. Likewise,
tools for such an enterprise—
that spectral radar—had yet
(have yet) to be invented.

girl hiding2

patternicity (a random thought)

23 Monday Nov 2015

Posted by in first principles (revised often), journal entry, quotation, random thought, zen

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Perfect-Geometric-Patterns-In-Nature7__880

More and more I think of the all-importance of pattern in this world. Finding the pattern, recognizing the pattern, comparing one pattern with another, finding their common sub-patterns, ur-patterns. (Wow, I’ve never used the prefix “ur” before!) Temple Grandin talks of pattern thinkers—got a quote about it somewhere.*

Metaphor and pattern—the same thing, really, just like fable and myth and archetype. It’s all about the comparison/contrast—the only way we can “understand” anything is, first, by contrasting it with what it isn’t like, then comparing it with what it is like. The contrast must automatically come first? I think so. We have an instinct to see everything as “other” until proven otherwise (and even after that). To the extent that we feel “at home” in the world, the world has ceased to be “other” and, whether we recognize it or not, has become an integral expansion of who we already believe ourselves to be—not just where we belong, but who we are, inside our skins but also outside.

Maybe this is why we fret so much about change? All these new “othernesses” to convert into “me-nesses,” “us-nesses,” over and over again. You have to become so nimble, as if you’re crossing a river by leaping from stone to stone. You have to trust life with your life, if only because you have no other choice. (You have to trust that life knows more than you do, because–geez–how could it not?)

I keep coming back to this: the purpose of dualism. It’s a construction–yes?—only that, a pattern we ourselves—with our yes-or-no minds–impose on the universe, to give us a vocabulary, a yardstick to describe things with. This is how we can imagine opposites even to things that don’t exist, or whose existence is beyond our ability to know—things like life vs death, all vs nothing, containment vs limitlessness. (We can imagine heaven, perhaps, to the exact degree we’ve known hell?)  And on and on.

———————–

*Here’s the Temple Grandin quote:

“I’ve given a great deal of thought to the topic of different ways of thinking. In fact, my pursuit of this topic has led me to propose a new category of thinker in addition to the traditional visual and verbal: pattern thinkers.”

And then there’s this that I just found:

temple grandin pattern thinker

And while I’m at it, why not:

temple grandin quote

On days you can’t remember (a poem)

29 Thursday Oct 2015

Posted by in hannah, poem

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On days you can’t remember

On days you can’t remember who she was,
you disinter the pictures (you don’t want to!),
then focus on benign peripheries,
so that the first contritenesses that haunt you

will show themselves banal: ‘whatever happened
to that armoire?’ ‘That dishwasher broke down.’
‘I miss the velvet couch.’ ‘I wish we hadn’t
let the thistle overrun the lawn.’

Entice your vision toward more pointed hints:
Salute the crib, the changing table. Welcome
a glimpse of diaper bag. Recall its scents
of disinfectant, sour milk, and talcum.

You deftly sidestep ‘what’s she thinking here?’
and ‘does she know it’s me behind the camera?’–
yet trip on ‘why such tangles in her hair?’
and ‘did we never change from our pajamas?’

Retreat beneath the quilt her grandma made.
Review the popup book, rewind the mobile.
Respin the top, recoil within the bed.
Renurse, resing, resigh, relaugh, rebabble.

And, should you need to, build a sturdy house
of quatrain stacked on quatrain. Window-free
at last, live lyrically, your mind diffuse–
all squinting rhymes and harmless frippery.

Go, dear one. Pile words one upon another.
Form thick iambic castles, if you wish.
You have the right, love—you who were her mother—
to veil what life remains in artifice.

hannah

Thinking about Temple Grandin (a poem)

22 Wednesday Jul 2015

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Thinking about Temple Grandin

To triumph over tragedy. How odd
to think of either word without a clang
of chaos in your head. As if some god
decides what sub-division you belong

to, up or down. As if there’s up or down
at all. Your tragedy remains. Or else
it never was. Or else to swim/to drown
are synonyms, as each word melts

the other. We can’t know what’s tragic. Nor
can we discern—not yet—what triumph is.
Yet both words thread their silver through your hair.
Their twin ghosts glisten through your cowgirl eyes.

grandin

grok* (journal entry)

22 Monday Sep 2014

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vintage-packaging-flower-seed-packets-from-thes_icnfe_4

(http://thepackaginginsider.com/vintage-packaging-flower-seed-packets-from-the-1800s/) (lovely!)

Journal entry, August 28, 2014

Cleaning house yesterday, on a forgotten shelf I found a shirt of Hannah’s. A stretchy Goodwill t-shirt, powder blue, with folksy flower-seed-packet art on the front. Minor stains, of course, plus a hole in the back collar where someone (I?) had clumsily lopped off the tag. [Shirt tags made Hannah itch.] I held the shirt to my face and breathed it in like an idiot seeking the flowers. But no, it was just that the shirtfront–and then the shirt’s inside–was the only part that hadn’t been exposed to nine years of dust.

And I believed the shirt still smelled like Hannah, believed that I could know–could grok*–her presence, her self, merely through these greedy inhalations of not-quite-random air. I sat on my bedroom floor and pulled the shirt onto my head (think of a blind bank-robber), and then, to a point far past absurdity and fast approaching asphyxia, I breathed in and out its ineffably Hannah smell. (Must, dust, detergent, every mundane staleness, but something of her there too–something.) I chose to feel myself awash in her essence. As in the many dreams I’d dreamed, hope-caught, throughout her life, I felt free once more to slip beneath the surface of Hannah’s embryonic, oceanic world, and to breathe, however feebly, underwater.

I chose to feel–and to believe–all this on such a primal level that the mind had no clue of the choice till it was made. But with a shrug, quite used by now to the heart’s vagaries, the mind humored us both. I nuzzled for one last deep second against the thread-worn seams that defined the shirt’s armpits. Then I pulled the shirt off and held it awhile. I dusted it, refolded it, and–ah, my darling girl, now what to do? Replace it on the forgotten shelf? Cleave it into rags? Throw it away? I couldn’t, can’t, decide this yet.

Ah yes, but still, how well I know: let go, let go, let go, let go.

——

http://en.wikipedia.org/wiki/Grok:

*Grok /ˈɡrɒk/ is a word coined by Robert A. Heinlein for his 1961 science-fiction novel, Stranger in a Strange Land, where it is defined as follows:

Grok means to understand so thoroughly that the observer becomes a part of the observed—to merge, blend, intermarry, lose identity in group experience. It means almost everything that we mean by religion, philosophy, and science—and it means as little to us (because of our Earthling assumptions) as color means to a blind man.

July 7, 2004 (ten-year-old journal entry)

08 Friday Aug 2014

Posted by in autism, journal entry, vignette

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July 7, 2004

When I say goodbye­–when I try to say goodbye—they put their arms around me, one from one side, one from the other. And they cling there. Henry says, Okay Beck, here’s the plan—we don’t let go and she never gets away.

Becky had a dream–she and Henry were chasing me.

It takes such courage to let me go—I must have done something wrong. It should be easier than this. Their lives shouldn’t suspend themselves in midair when I’m out of sight. It all makes me very nervous—I hate the goodbyeing. The long drawn-out process, the hug I have to wrench myself away from, the sad faces, hurt faces as if I’m betraying them by wanting something separate. I can’t walk into a room without their watching my every move. Today Becky tells me her tale of woe. Then Henry walks in and says, “When she’s done complaining to you, I get to be next.”

statue-juggling-plane-perfect-timing

How it was (a short essay i wrote for a journal called “Narrative Inquiry in Bioethics”)

12 Monday May 2014

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How It Was

If I’d thrown her through the window that night, no one would have known I’d done it. After all, how many windows had she broken already? How many walls had been cratered by the smash of her head? (We even had a standard, bleak joke about it—that we could measure Hannah’s growth by the height of the holes in the plaster.) I could have gone into her room right then, and under cover of dark I could have dragged her to her feet and flung her hard against the one broad pane we hadn’t yet replaced with plexiglas. There’d be no obstructions on the way down, and only hard sidewalk below.

But what if the window didn’t break? Or if it didn’t break enough, if it left her halfway in the room, and only bleeding? The thing was, of course, that Hannah never seemed to bleed, or to damage herself at all, in her plunges through glass. She was amazing that way. She seemed unscathable in the direst of circumstances, and by now we’d gotten so used to her invulnerability that, if I’d thought about it, I’d probably have believed that she could walk through fire without getting burned, get hit by a car without breaking a bone, drink poison and feel only happy effects.

Not that I ever thought of burning her, breaking her bones, feeding her poison. Understand, if you possibly can, that I’d have been the one dashing into the fire to save her, yanking her out of the line of traffic, forcing the ipecac down. It was hardly ever that I seriously considered throwing her out a window.

And even now I was giving up the idea, because I realized that the window probably wouldn’t break completely, so she wouldn’t fall all the way through. I’d have to shove her out the rest of the way, and I knew that was far beyond anything I could ever do. Which meant that Hannah, impervious or not, would surely end up wounded, bleeding, hurt—and not dead—and I couldn’t have borne that. The last thing in the world I wanted was to make her feel even worse than she did already.

***

My firstborn daughter was diagnosed with autism at the age of three. At first the experts we took her to considered hers a “mild” case, and I clung—by talon, by tooth—to that word, “mild,” for several years past the point when everyone else, even the experts themselves, could see that the experts had been wrong. In her seventeen years of life, Hannah never learned to speak her own name, much less to communicate her thoughts, needs, and feelings in any way those of us who loved her could readily understand. And for a long time this seemed a terrible, terrible tragedy to me—this growing realization that she would probably never be able to learn much about the world at large, or follow the plot of a simple story, or play a real game, or make a friend, or fall in love, or live on her own. But it’s amazing what you can come to accept, if you have to, and eventually I reached the point where absolutely none of that mattered to me anymore, and the only thing I really wanted was for Hannah to be “happy,” in whatever form that might take for her, and for however long it could last.

Her “rages,” as I came to call them, began around the time she turned six, and accelerated as she reached puberty (which often comes early to autistic children: Hannah had her first menstrual period at the age of nine). For an hour at a time, sometimes even for half a day, she could, indeed, be very happy—rocking in her dilapidated La-Z-Boy, swinging as if to touch the sky, laughing and swaying as she stood surveying the world from atop the highest banister or playground slide or jungle gym she could find. But in a single, breathtaking instant, all that could change, and Hannah would suddenly let out a shriek and start pounding her head as hard as she could, over and over, against the hardest nearby surface. Sometimes these bouts of pain and fury would last for just a few minutes, but sometimes, and increasingly, they went on for hours.

For the first several years of her rages, she was still small enough to hold down. If you were quick enough you could get to her before she could hurt herself much, and you got to be pretty adept at slipping over her head the special, cushioned helmet the doctor had prescribed. You learned to hug her tightly from behind, to hold her arms close against her chest, and to lean your head backwards and away so that she wouldn’t be able to ram the back of her own head against it.

But somewhere around the time she was twelve or thirteen, she got too big for all that, and it took a team to stop her from hurting herself or other people. The teachers in her special ed classroom would often have to “call a code” over the school loudspeaker, which meant that the burly male gym teacher down the hall would drop everything and rush over to help. At home, of course, we didn’t have such an option, and if I was alone with Hannah when the raging began, and I’d tried everything on my list of strategies to calm her down—music, videotapes, food, play-doh, stress balls, fuzzy pipe cleaners, weighted blankets, holding her, singing to her, providing her with silence and space—I’d often have to give up. My other daughter, Becky, five years younger than her sister, would already have hidden herself in the basement. I myself would try to stay in the same room with Hannah for as long as I could, but over time this became harder and harder to do. Her rages had begun to take the form of attacks on the people around her, and she was dangerously strong. I’d been pinched, clawed and bitten many times, had had my fingers pushed backward to the threshold of breaking, had been nearly knocked out by the crash of her head against mine.

The state-sponsored social services agency for Butte, Montana, is called Family Outreach. Our case worker, Elizabeth, had been coming to the house two or three times a month ever since Hannah’s diagnosis, but though she’d been helpful all along the way—providing us with respite care, at-home trainers, books, therapeutic toys, funding for me to attend autism conferences, a Medicaid waiver to help cover Hannah’s medical bills—she was beyond her depth, as we all were, in trying to deal with Hannah’s violent outbursts. Meanwhile, my own mental health was disintegrating, as was my marriage, and in our family’s last-ditch effort to ease the burden we bought a second home, a cheap little place just a few blocks down the road from where we lived. We called it our “respite house,” and for a while my husband lived there full time. Then for a while, as I continued on the path to falling apart, he and I took turns staying there every night, and sometimes Becky and I would stay there together.
In the summer of 2002, Hannah turned fourteen. Around that same time, Family Outreach decided—I’m not sure just why—to reassign Elizabeth and to provide us with a new case worker. Her name was Maggie, and she seemed young and inexperienced—flustered by the paperwork, all the notes she was supposed to take, the charts to fill out, the various forms we both had to sign every time we met. But somehow she saw immediately what other people in Hannah’s life—doctors, teachers, therapists, case workers, and even (especially?) I myself—had never quite realized: namely, that ours was a family in complete crisis, and that unless a fundamental change took place very soon, we wouldn’t survive.

The first option Maggie came up with was straightforward: we could surrender our parental rights to Hannah, in which case the state would take her from us and set her up in some sort of foster care. My husband and I actually talked this over for a day or two—this business of simply handing Hannah over to the authorities—although I think both of us knew all along that we could never actually do it. So then Maggie came up with her second plan—the plan that saved our lives. We would move Hannah to the respite house, make the place safe and comfortable for her there, and take turns staying there with her each night. Meanwhile, Maggie arranged for an army of caretakers—some of them had been already working for us, but many were new—to work in shifts to take care of Hannah after school and on weekends.

Hannah made the transition amazingly well, and in fact within a week of moving to the other house, she seemed clearly to prefer it to living at home. At first the caretakers came to the house one at a time, but over the next couple of years, as Hannah grew more and more dangerous, it was decided that they needed to work in pairs. Sometimes, especially toward the end, there were three or even four caretakers at the house at once: one woman’s job was just to come in each night at 5:00, cook the evening meal, and give Hannah her nightly shower. Another woman—a specialist in an autistic therapy similar to Applied Behavior Analysis—drove from Helena to Butte every weekend to teach that training method to Hannah’s everyday caretakers. A video-recorder was installed in the kitchen of the second house, so that Hannah’s therapeutic progress could be monitored and the training methods adjusted.

Meanwhile, around the time she turned sixteen, Family Outreach started applying, on our behalf, for a residential group home placement for Hannah. Ironically, though, the very thing that made such placement so urgent—Hannah’s rages—was also the reason she was continually turned down. (After a while, every time a group-home position opened up, we faced an impossible dilemma: if we emphasized how hard Hannah was to handle, she was rejected as inappropriate, but if we played down her violent behavior, then the state saw no urgency in our situation, no reason why a sixteen-year-old girl shouldn’t wait a couple more years before placement.) Still, we kept hoping and applying, because we’d been told that the unprecedentedly high amount of state funding we were receiving to maintain what was essentially Hannah’s one-person group-home set-up might suddenly be withdrawn once she turned eighteen.

If Hannah had lived, she’d be twenty-three years old by now, and I don’t know—I can’t even guess—where and how and with whom she’d be living. But life goes whichever way it wants to, so instead Hannah died, a week beyond her seventeenth birthday, of an epileptic seizure in her sleep. Some people—good people, friends and family, many of whom have shown a notable capacity for making sense on other occasions—have declared her death a “blessing.” I marvel not only at the certainty of such people, but at the sweet relief they seem to find in being so certain. Meanwhile, some six years after Hannah’s death, I myself still don’t know what to think, and I don’t suppose I ever will.

Reminder (a poem)

21 Thursday Nov 2013

Posted by in autism, memoir, poem

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Reminder

On my forearm, close to my wrist,
there are two white scars so faded
and tiny that you might not notice them

even if I pointed them out to you.
They’re the remnants of a bite mark
I received on Christmas Day, 2001. One

is a short white line and the other is
roughly circular–the circumference
of a molar. And of course they’re not all

that remain of my daughter–I have stacks
of pictures and videos, school art projects,
doctors’ reports, activity charts, MRI scans,

Special Olympics medals. I’ve kept five
or six pieces of her clothing, including
the sneakers I wear when I take the dog

for a walk along the rutted ATV trails
just west of town. I even, ridiculously, have
her brown velour La-Z-Boy rocker, ripped

and stained, the underlying structure so
decrepit that when you lean back into it,
the broken laths curve around to

conform to the shape of your body,
as if in capture or embrace. But it’s
the little scars that soothe me most,

because they’re always right there
with me, like pale tattoos, and they’ll
be there till the day I die.

How It Was (a poem)

20 Wednesday Nov 2013

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How It Was

If I’d flung her through the window that night,
no one would have known I’d done it. For how many
windows had she smashed by now? How many walls
had she cratered? We lived in an asteroid storm.

(A feeble joke we told our friends: that we
could gauge our daughter’s growth by the height
of the holes.) I’d pinned her down—embrace turned
tourniquet–on our bare, midnight mattress. But

I could have let her go, and when she charged,
I could have shoved her hard against the one
broad pane not yet replaced with plexiglas.
Her only chaperon: the air. Only sidewalk,

her release. But if the window didn’t break?
Or didn’t break enough, and left her equipoised,
and only bleeding? We thought her unassailable,
thought shards of glass, like all of us, were barred

from ingress. (Was her very skin oblivious?)
However founded in calamity, she seemed
unscathable. I seemed to think she might
cavort through fire unburned, clash with a car

without breaking a bone, drink poison and feel
merely sated. Not that I had ever thought
of burning her, breaking her bones, feeding her
poison. Understand, if you possibly can,

that I ached to be the one who leapt
into the fire, snatched her from the line
of traffic, forced the ipecac down. It flew
at me just once (no–twice)—this fierce retort:

throw her out the window. This urge—more howl
than wish–I let it go. For I knew windows well
by now. They’re not like in the movies. She would fall
halfway through and dangle. Is there a heart

that wouldn’t vaporize at once, rather than
abet that second push? …And so she’d end up hurt,
not dead. (Beyond my scope, this lone barbarity:
to make her feel worse than she already did.)

One Thing I Know For Sure (a vignette)

18 Monday Nov 2013

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One Thing I Know For Sure

This happened on what, by our standards, was an ordinary night. It was maybe a year after the diagnosis; Hannah was four years old. We were in the living room, and I was holding her, rocking her, in the La-Z-Boy. In those days she still liked being held, at least by me—I’d kept her used to it, I guess, by all the nursing, which was something she still loved so much that I’d given up the habit of bathing very often, because I knew how much she enjoyed breathing in my sour, mammalian smell. But right now I wasn’t nursing her. We were just rocking slowly, and watching TV, probably one of her Sesame Street videos, I don’t know. We were alone—I don’t know where my husband was.

I was talking to her endlessly, just absently commenting on the action of the video, or singing along with the songs. It’s what they tell you to do, of course—you’re supposed to keep talking and talking to an autistic kid, trying to make some little connection, elicit some tiny response. It came to remind me of how, if your ship is sinking in the middle of a dark empty ocean, you keep sending up flares anyway, just in case someone else might be out there, invisible to you.

We felt cozy that night: we both liked the Sesame Street videos, and we both liked rocking, and I think it might have been winter outside, because being inside felt more than usually luxurious. I leaned in close to Hannah’s ear, and I whispered, “I love you, Hannah.” And as we kept rocking I added, “Now you say, ‘I love you, Mommy.’” And it was just one of my rituals—I had so many in those days. I didn’t expect a response. I didn’t expect anything. It was just another of those things people told you to do, like waving goodbye when she boarded the pre-school bus, or trying to coax her into blowing out the candles on her birthday cake.

But on this particular night, just like that, as if it were the most everyday thing in the world, Hannah actually turned her face toward mine and said, very plainly, ‘I love you, Mommy.’”

Or maybe she didn’t turn her face. Maybe she just stared into space as she said it. It happened so fast, and it was almost twenty years ago. I’m not sure I can trust my vision of it. I can’t remember the tone of her voice anymore, whether it seemed heartfelt or just mechanical, parrot-like. (‘Echolalic’—that was the term they all used.) Just seconds after it happened, in fact, the whole thing fell apart, started to feel completely unreal, like a scene from one of the thousands of dreams I used to have in which Hannah talked.

So by now, some five years after her death, the only way I know the thing happened at all is that I made a point of remembering it. I said to myself—right then, as I held Hannah in the chair, and we watched Sesame Street, or whatever it was—I told myself that I’d have to hold on to this moment. It might be the only time I’d ever hear these words, I thought, so I’ve got to carry them with me forever, and they have to be enough.