12.27.2015

For Megan



Two years ago today, time went off the tracks and my worst fears materialized ... the worst possible thing that could happen, happened ... and my daughter, Megan, in an instant, stopped breathing and died.  And yet two years ago today she was also still alive.  She was sleeping in that morning, on Christmas break from high school, when I left for work, so I didn't give her a kiss on the cheek like I usually did on my way out the door.  I didn't say goodbye.  I left home for work that morning living the life I'd always known, a good life, and returned home that night to utter desolation. To ruins.  Her tragic death, at times, even now exactly two years removed from it, still feels like only yesterday—and yet a yesterday a lifetime ago.  How can forever still feel so close?

Heedless of Megan's absence, time passes.  Time waits for no one is a brutal surreal truth.  Phillip K. Dick called this paradox of time's passage in our perceptions TIME OUT of JOINTthe title of his early, 1959, novel. What did he know that we don't about time? T.S. Eliot, in BURNT NORTON, knew that Time present and time past / Are both perhaps present in time future, / And time future contained in time past.

Marcel Proust knew as well as anyone that remembrance transcends time, and so today I'd like to follow his lead (albeit in far fewer words) and remember Megan, my beloved girl, so that her memory too may somehow transcend time.  With that objective in mind, I've collected below, in fragments, any spinning blur of a photograph or recollection I could find in my old book reviews and other writings.  Click on the links below and, somewhere, in something obscure I wrote about this under-appreciated book or that one, Megan is there—forever—I hope.

Megan was born, barely alive, on August 11, 1998, at 6:31pm. Within minutes of her birth (I can still hear that goopy, suction sound, when she was hurriedly scooped out in an emergency c-section), she was practically hardwired into an I.V. pole and monitor.  Lying un-conscious in that little bed, she looked like she was some futuristic robobaby.  She couldn't cry, even had she been conscious, since she'd been immediately intubated after birth. My wife and I cried in her stead, watching her fight for her life from the get-go. Megan's left wrist had been slashed to insert an "art" line to monitor the rhythms and inner workings of her odd heart.  Her skin was mottled blue, meaning she was "cyanotic".  Her blood pressure and "sat" readings zig zagged all over the place on her monitor.  Our eyes, when not on Megs, were glued to that monitor flashing numbers in multiple colors nonstop.  The "art" (or arterial) line provided NICU staff with instant readouts of her malfunctioning heart.  Had there been a print out in real time monitoring the wild, second-by-second, fluctuations in her blood pressure, I imagine it may have appeared on paper as if her heart were having an earthquake.  One that went on hour after hour, day after day, for weeks.

Congenital heart defects are common among babies like Megan born with Down syndrome. Megan had a doozy of a heart defect: "tetralogy of Fallot".  I couldn't even begin to explain tetralogy of Fallot, even though the doctors did their best to explain it so we'd understand.  Her doctors huddled around her bed. One took us aside and advised my wife and I to prepare, to be ready, just in case—saying she wanted to be completely straight with us—that Megan might not make it, that we might not be taking our baby home.  I wrote "TET BABY" as a result of this intense experience and not from any exact memory of her fighting-for-her-life ordeal, for time then when all we could do was stand idly by, staring at "sats," was just this timeless, mind bludgeoning blur, especially when she'd "crash" and have to be "bagged"; but rather, I wrote it from a photograph of her lying immobilized beneath that riot of tubes and wires that I found thirteen years later, when I was looking for something else in my desk.

Those early days with Megs were fraught with fear.  She might not make it.  What else could go wrong?  I touched more on those early days in what was one of the earliest books I tried my hand at reviewing, BABIES with DOWN SYNDROME: A New Parent's Guide by Karen Stray Gundersen. Over the last five years of Megan's life, her
name came up fairly frequently within the con-text of the plots or cir- cumstances in the life of whichever character in whatever book I happened to be reading and reviewing at the time.  And writing about Megan was both a joy and catharsis for me; as it was, for instance, in my review of DISABILITYLAND by Dr. Alan Brightman, in which I vented my frustrations and anger over the ever ongoing challenges we faced in advocating for our daughter's right to F.A.P.E. ("Free and Appropriate Public Education") under I.D.E.A. ("Individuals with Disabilities Education Act, 1982") within a largely broken public school system and administrative bureaucracy that prioritizes maintaining their six-figure salaries at the expense of providing appropriate levels of federally legislated services such as speech therapy to its special needs students. Beyond catharsis, reading and reviewing great books could (and still can) be like sitting down for dinner with a dear friend and experiencing that unbreakable
bond of commiseration: times of reconnection that can inspire re-newed hope for the weary and dis-heartened. I experienced all that upon reading and then reviewing LOVE YOU to PIECES: Creative Writers on Raising a CHILD with SPECIAL NEEDS, a brilliant anthology of short stories, novel excerpts, and poems, edited by the expatriate novelist Suzanne Kamata, who lives in Japan.  Love You to Pieces is an essential book for anyone who lives or works  alongside human beings with special needs.  One of the contributors in Love You to Pieces, Hannah Holborn, having read my review, contacted me on LibraryThing and later sent me a signed and inscribed copy of her first story collection FIERCE: Stories and a Novella.

cover by Lindsey Spinks
Human beings with special needs are often far more perceptive, far more there, far more aware and present in the moment than their more "typical" peers probably think or could possibly imagine. Perhaps even more than their parents could possibly imagine.  I dealt briefly with this facet of Megan's interior life in my review of The DIVING BELL and the BUTTERFLY by Jean Dominique-Bauby, a profound and moving account of a physically and psychologically afflicted man's last days before succumbing to "locked-in syndrome".  Megan, likewise, due to her limited ability to communicate verbally, was "locked inside" herself.

I remember well the moment when I caught my first glimpse of how much more was going on inside Megan than I'd ever previously realized.  I wrote about this dawning realization in an online group that's been talking books and literature together for over six years. And so here I'll quote what I wrote in its (slightly edited) entirety:

I came to James Branch Cabell late, through my online pal, Crypto-Willobie's, unmatched passion for the man, in 2012.   The first book of Cabell's I bought was the Dover, pricier edition, of JURGEN, with the Frank C. Pape illustrations, while on our summer vacation that year down the coast in Carlsbad.

Found it at a great local shop, Farenheit 451 Books. And I began reading it that summer on vacation: that idyllic summer vacation right on the sand in Carlsbad that would turn out to be the next to last summer vacation we'd have with our daughter, Megan, who would pass away suddenly and unexpectedly from cardiac arrest the result of a pulmonary embolism just a few days after Christmas, 2013.

During that vacation I really connected with Megan for the first time.  I don't mean to suggest we were disconnected before that, but due mostly to her autism (which only exacerbated the verbal communication challenges she already faced having Down syndrome), and my inability to see through all the tics and "special" personality quirks she presented, I had no clue that there was a deeper level of connection awaiting us. But
there was, and we bonded beautifully that summer week on the beach in a way that was magical and hard to describe exactly. For the first time that summer, rather than get on her to "come on, Megan!" and wade out farther with the rest of us into the ocean; "you can do it, Megs!" (as she was invariably leery of doing because of her hypo-tonia and sensory issues that caused in her an understandable disequilibrium whenever she stood on such unsteady ground), I backed off and met her on the beach right where she was at.

That summer — and why I don't know why (must have been intuitive) — I decided to just sit beside her, as she sat, on our butts with our legs aimed at the horizon in the damp, compacted sand of low tide, while the small curls and constant surges of seawater splashed into us, knocking us over, these warm sudsy edges of the ocean sizzling all around us. Back on our butts "the sea would slide back" (as Sylvia Plath once poetically put it), and we'd look at each other and laugh, and wait, all giddy and giggly in anticipation of the next wave. During one of those interludes that summer at the beach, waiting for the shore pound to bowl us over again so we could laugh till it hurt together again, I looked into her eyes and she looked into mine, and I saw that I was meeting a deeper part of Megan I'd never met before for the first time. We spent hours of almost every day during that idyllic vacation on the sand like that, becoming as one with the rhythms of the waves as we'd become with one another.  Megan was already thirteen that summer (and only had a little over two years left to live) and yet in a very fundamental way I realized — I felt it, just knew it — that I was meeting my daughter for the first time. And we were so close thereafter, tight buds, until the day she died.  And now, of course, though she's gone, Megan still exists in that faraway realm of James Branch Cabell's Jurgen, somewhere "between the dawn and the sunrise".

About a year before Megan died, I reviewed PLACE LAST SEEN, the debut novel — and so far only novel (sure wish she'd write another one) — by Charlotte McGuin Freeman.  In her mesmerizing novel, a girl with Down syndrome named Maggie (we often called Megan "Meggie") goes missing on a family day hike in late autumn in the Sierra Nevada's Desolation Wilderness.  The outcome for Maggie and her family is, you could say, sheer desolation.  Sheer devastation.  Freeman, unaware of my daughter's passing, contacted me here at the blog not long after her death to say thanks for the review. Her comments follow my review.

The day after Megan died I posted "HOPE," (Megan's middle name) which in retrospect was completely for myself — and the commitment I was then making to myself and, perhaps more importantly, to my wife and family, that together, no matter how excruciating and permanent our grief would be (and only one day removed from Megan's death I really had no clue just how cruel and excruciating that first year would be) we would nevertheless figure out a way together to survive our shared ordeal. And we did, and continue doing so.

A couple weeks later, GHOST RIDER: Travels on the Healing Road by Neil Peart gave me some great advice on surviving the death of a child.  God forbid another person out there reading this loses — or has already lost — their child. Whether I know you or not, whether it seems odd to you or not that I'd say it—me, some stranger in cyberspace you do not know—do know, regardless, that I'm genuinely sorry for your loss. No one wants to be in our club, so those of us with the misfortune of being in it share an uncommon but universal bond.  Only recently, the poet and author Terese Svoboda was kind enough to leave a message on my blog after I'd briefly mentioned Megan in a post — On Discovering Lola Ridge while visiting Terese Svoboda's website — about Svoboda's soon-to-be published biography, ANYTHING THAT BURNS YOU: A Portrait of LOLA RIDGE, Radical Poet, that I'm looking forward to reading once it's released by Schaffner Press on February 2, 2016, and hope many other people will likewise do so. Lola Ridge's poem MOTHER explains for me, better than I can, the experience of attempting to describe in this post what it's like remembering Megan, and so I'm sharing it here again:


Your love was like moonlight
turning harsh things to beauty,
so that little wry souls
reflecting each other obliquely
as in cracked mirrors...
beheld in your luminous spirit
their own reflection,
transfigured as in a shining stream,
and loved you for what they are not.

You are less an image in my mind
than a luster
I see you in gleams
pale as star-light on a gray wall...
evanescent as the reflection of a white swan
shimmering in broken water.

Megan was beyond awesome. Beyond words. I was beyond lucky to be her Dad.

Even though she's been gone for two years now, I still find myself saying — as I've said everyday since she abruptly left, and as I suspect I'll be saying everyday that I have left — So long sweet girl. . . .



.


.


.


.


.


.


.


.


.


.


.


.


.


.


.





.


.


.


.


.


.


.


.


.


.


.


.



12.20.2015

The Best Twelve Books I Read in 2015, Month by Month (plus runners-up and honorable mentions)



JANUARY
    One of the Children is Crying ~ Coleman Dowell (1968)


FEBRUARY
   Heavy Daughter Blues ~ Wanda Coleman (1987)


MARCH
   The Book of Dolores ~ William T. Vollmann (2013)
 

APRIL
   Asylum Piece ~ Anna Kavan (1940)






















MAY
   The Climb: Tragic Ambitions on Everest ~ Anatoli Boukreev & G. Weston DeWalt (1997)


JUNE
   Beyond Life: Dizain des Démiurges ~ James Branch Cabell (1919)


JULY
   Hell House ~ Richard Matheson (1971)


AUGUST
   Metrophage ~ Richard Kadrey (1988)


SEPTEMBER
   
   Literary Outlaw: The Life and Times of William S. Burroughs ~ Ted Morgan (1988, 2012)

OCTOBER              
   A Fabulous Opera ~ Tropic of Ideas (2015; edited & illustrated by Solla Carrock)























NOVEMBER
   Nakamura Reality ~ Alex Austin (2016)


DECEMBER
   Ice ~ Anna Kavan (1967)


~~~~~~~~~~~~
RUNNERS-UP

January ... Telling Stories by Joan Didion (1978)
February ... The Award Avant-Garde Reader* edited by Gil Orlovitz (1965)
March ... The Encyclopedia of the Dead by Danilo Kis (1983)
April ... The Body by William Sansom (1949)
May ... Crooning: A Collection by John Gregory Dunne (1990)
June ... Revolt in Aspromonte by Corrado Alvaro (1930)
July ... Rashomon and Other Stories by Ryunosuke Akutagawa (1952, posthumous)
August ... Storming the Reality Studio: A Casebook of Cyberpunk and Postmodern Fiction** edited by Larry McCaffery (1991)
September ... The Blue Hammer by Ross MacDonald (1976)
October ... Kamikaze L'amour by Richard Kadrey (1995)
November ... La-bas by Joris-Karl Huysmans (1891)
December ... Naomi's Room by Jonathan Ayecliffe (1991)

included in the fiction anthology are the following stories:
"Proclaim Present Time Over" by William S. Burroughs // "Passage De Milan" by Michael Butor // "The Fantom of Marseilles" by Jean Cocteau // "The Open House of Asmodeus the Tortoise" by Peter Jones // "Wakerobin" by Thomas McEvilley III // "I'm Just in Sparta on a Visit" by Gil Orlovitz // "Ravenna" by Antonio Pizzuto // "Capricio Italiano" by Edoardo Sanguinetti // "Someone Just Like Me" by Sol Yurick.

** included in the anthology are short stories, novel excerpts, poetry, essays, and literary criticism; all of the works of fiction are listed below: 

—"Beyond the Extinction of Human Life" (from Empire of the Senseless) ~ Kathy Acker
— excerpt from Crash ~ J. G. Ballard
—"Mother and I Would Like to Know" (from The Wild Boys) ~ William S. Burroughs
—"Rock On" ~ Pat Cadigan
—"Among the Blobs" ~ Samuel R. Delany
— excerpt from White Noise ~ Don Delillo
— excerpt from Neuromancer ~ William Gibson
—"Fistic Hermaphrodites" // "Microbes" // "Penetrabit: Slime Temples" // "nerve terminals" ~ Rob Hardin
—"Max Headroom" ~ Harold Jaffe
— excerpt from Straight Fiction ~ Thom Jurek
—"The Toilet was Full of Nietzsche" (from Metrophage) ~ Richard Kadrey
—"Office of the Future" (from Dad's Nuke) ~ Marc Laidlaw
—"I was an Infinitely Hot and Dense Dot" (from My Cousin, My Gastroenterologist) ~ Mark Leyner
— excerpt from Plus ~ Joseph McElroy
—"Wire Movement #9" // "Wire for Two Tims" ~ Misha
— excerpt from Easy Travel to Other Planets ~ Ted Mooney
—"Frame 137" ~ Jim O'Barr
— excerpt from The Crying of Lot 49 ~ Thomas Pynchon
— excerpt from Software ~ Rudy Rucker
— excerpt from Life During Wartime ~ Lucius Shepard
—"Stoked" ~ Lewis Shiner
—"Wolves of the Plateau" ~ John Shirley
—"Twenty Evocations" // "The Mare Tranquillitatis People's Circumlunar Zaibatsu: 2-1-'16" (from Schismatrix) ~ Bruce Sterling
—"The Indigo Engineers" (from The Rainbow Stories) ~ William T. Vollmann

~~~~~~~~~~~~~~~~~~~~
Honorable Mentions, 2015

American Stories by Nagai Kafai (2000, posthumous)
Burnt Sienna by David Morrell (2000)
Painted Devils: Strange Stories by Robert Aickman (1979)
The Nihilesthete by Richard Kalich (1987)
The Unseen by Joseph Citro (1990)


12.09.2015

'Tis the Season for Ice by Anna Kavan



Ice actually isn't the best book a person could read during the festive Christmas season.  Though, if like me, you find the Christmas season and all its schmaltz and glitter difficult to endure, what with it's incessant and crude consumerism, its sickening good cheer — Ice, then, could be the perfect antidote to Christmas for you.

Other than that time I had open heart surgery in the next-to-last year of the Twentieth Century and, afterwards, in my recovery, was prescribed powerful opioids to manage the impossible throbbing pain, reading Ice by Anna Kavan is the closest I've ever come to being a junkie.  Classic though it is, Junky's got nothing on Ice when it comes to having a vicarious experience of what the long term hallucinatory effects of using heroin must be like upon one's psyche.  Sorry, William S. B., you know I still love you.

Ice is a consummate downer. It is major clinical depression — and maybe madness — incarnate, a deep freeze of the mind and spirit that is somehow resurrected as a phoenix ablaze in the preternatural imagination of Anna Kavan, who projects her cold conflagration out into the (un)natural world. Ice burns its images, it's searing insanity, into the deepest crevices of your mind — a dry ice novel if there ever was one, as smoke and snowflakes waft a-spiraling from its peculiar pages.   But it is a beautiful, brittle, burning world, imagined by Anna Kavan; her physical and psychological chaotic cosmos, an optical illusion, ruined by cold explosions of luminous, fiery ice.  My God there are so many different ways you could interpret the unnamed narrator's stark perceptions of her inner and outer worlds. She defines it for us in a line: "Reality had always been something of an unknown quantity to me".  I can't help wondering, hearing her take on "reality," if perhaps the "she" narrating the grim journey has dissociated, and the woman she meets early on in the novel at the "fort on the hill" is really a projection of herself rather than a separate individual? In other words, the unnamed "Her" she seeks in the novel could be a simple, but complex (and I suspect ultimately hopeless) search for herself, perhaps?  Maybe.  Maybe not.  Ambiguity reigns in Ice.  Interpretations are open-ended.  Reality and delusion are so well blended they've become something else entirely, but what? A "hybrid state of being," as an online friend — Zenomax — who was also reading the book at the same time I was, coined it, with an ability to see what most of us cannot — a lucid delusion perhaps?

"Ice had already engulfed the forest, the last ranks of trees were splintering.  Her silver hair touched my mouth, she was leaning against me.  Then I lost her; my hands could not find her again.  A snapped-off tree trunk was dancing high in the sky, hurled up hundreds of feet by the impact of the ice.  There was a flash, everything was shaken.  My suitcase was lying open, half-packed, on the bed.  The windows of my room were still wide open, the curtains streamed into the room.  Outside the treetops were streaming. . . ."

What do you make of that?  Her voice, the narrator's of Ice, estranged from any recognizable reality I've ever seen, is reminiscent to me of many of the unhinged, anxiety ridden, narrators in Asylum Piece and Other Stories, who weren't so much "mad" I think, as they were erroneously and so often maliciously diagnosed by their "caretakers" or wardens, but more likely lacking the psychological defense mechanisms that protect most "sane" persons from the intensity of their feelings and perceptions over the losses, the griefs, the addictions, and the resultant isolation that are somehow triggered and later magnified whenever they are exposed for any length of time to the simple rawness of the images and sensations produced by the outer "natural" world confining them inside a subzero and cavernous spiritual claustrophobia.  A world of mental suffocation, whiteouts, disorientation, "diminishing visibility ... increasing uneasiness" creating such acute panic and paranoia that delusion and hallucinations become the understandably "sanest" refuges for this unreliable narrator in an, if we're to believe her perceptions, incomprehensible, nuclear ruined icescape.

Ice, in a sentence, is a frigid death sentence; it is an abstractionist's vision of a personal post-apocalypse.  Ice was Anna Kavan's last fix, a sumptuous suicide note, her frost bitten goodbye.

"Self Portrait" by Anna Kavan
"...she faced a stupendous sky-con-flagration, an incredible glacial dream-scene. Cold corus-cations of rainbow fire pulsed overhead, shot through by shafts of pure incan-descence thrown out by mountains of solid ice towering all around. Closer, the trees round the house, sheathed in ice, dripped and sparkled with weird prismatic jewels, reflecting the vivid changing cascades above. Instead of the familiar night sky, the aurora borealis formed a blazing, vi-brating roof of intense cold and colour, beneath which the earth was trapped with all its in-habitants, walled in by those impassable glittering ice-cliffs. The world had become an arctic prison from which no escape was possible, all its creatures trapped as securely as were the trees, already lifeless inside their deadly resplendent armour."

Poetic, alliterative passages like the one above, remind me of William Blake.  Or is it Samuel Taylor Coleridge's frozen abyss in Kublai Khan I'm reminded of — or maybe both?  Some online friends hereabouts have astutely suggested that Ice reminds them of the late, reclusive, French author, Julien Gracq. Indeed, Ice could be Chateau d'Argol set in Antarctica.