Undoing Winter

All posts tagged Undoing Winter

Trigger warning: description and images of medical procedures, body trauma, and really long obligatory “recap” before I can start adding new content to this blog after such a lenghty hiatus

So, uh. Hi,

It’s been a while.

Meta me, AWP 2018
Tampa, Florida

Halloween is the witch’s New Year, so what better time for a reflection on what’s been going on since this writing blog went quiet?

Where I’ve been:

In my mind, it’s still 2018. Like, honestly, I blinked and woke up an old lady in the apocalypse. (True and also not true. I’ve also lived a hundred years since then, and I felt every minute of it).

2018 was and still is the highlight of my professional life as a writer. Just that year I’d won a creative writing fellowship from my home state of Delaware after multiple previous honorable mentions. A novelette I wrote had recently appeared in a major genre magazine and I was featured as an “industry outsider” in a writing craft mag, both available on the shelves of our local B&N. I released my first full-length book of poetry in collaboration with a noted poet and editor in my field, still floating on the high of my award-winning debut chapbook. I used part of my award money to attend my first AWP Conference as a representative of my own online literary journal, Riddled with Arrows, and I served on the executive board of an international organization of speculative poets, bosom buddies or at least a first-name-basis with some of the best genre writers in the world. I headlined a writing contest for the Philadelphia Writing Conference, got paid to run writing and poetry workshops on topics of my design in my home town, and I performed in museums and literary events throughout Delaware–all while battling a progressively debilitating mystery illness.

(My beloved grandmother died in December 2018. So did my 19-year-old cat.)

Me at the Art & Book Fair in Hockessin, Delaware with my “literal” last spoon (courtesy William Hahn, background)

Immediately after my final appearance in early January 2019, I collapsed. By that point I had been sick for at least ten years–I trace my symptoms either to the traumatic birth of my son in 2006 (the beginning of my migraines) or to chasing after him in 2008 (the year the daily icy phantom headache set in). After years of bouncing between specialists I’d settled for calling it “chronic daily migraine”, which for a long time I managed with painkillers and grit. But I’d burned off the last of my energy to complete my fellowship year, and now I found myself with nothing left to live my life.

(I honestly thought I would die before they figured out what was wrong with me.)

I’d started losing my vision that summer. Everything outside of a few feet was blurry, and light hurt my eyes. I saw half a dozen eye doctors who all said my prescription hadn’t changed because if I squinted and concentrated I could just make out the letters on the chart. I found a surgeon who said I had cataracts that weren’t “ripe” yet, though he’d be happy to remove them for me, just as the EN&T surgeon had been happy to cut into my sinuses twice before shrugging my symptoms off as allergies.

I took to wearing sunglasses indoors, and ear plugs in my ears to stop the painful reverberations from the slightest sound. I had ringing in my ears as well, and a constant dragging sensation deep in my ear canal and throughout the right side of my skull. I couldn’t think straight, couldn’t form words without thinking about it first, and kept saying the wrong thing anyway. I’d been using a cane for months to help with balance and numbness and fatigue, but now I couldn’t walk without holding on to walls. I had a two kids and a thirteen year-old migraine. All I wanted to do was lie down.

Inforgraphic from https://spinalcsfleak.org

In the February of 2019, after asking my neurologist for one last Hail-Mary MRI, I finally got my diagnosis—one that I had floated myself about five years earlier. It’s called Spontaneous Intrancranial Hypotension (SIH), though in my case there was nothing spontaneous about it. At some point a long time ago I developed a fistula between a vein and my spinal dura, or maybe a tear in the dura that over time became a fistula; in either case it meant that the reason I’d had all these mounting neurological symptoms was because for years I’ve been dumping spinal fluid into my bloodstream—a leaky tap causing my brain to sink lower in my skull. It had gone unnoticed for so long because the body learns to ramp up cerebral fluid to compensate, but as I had demonstrated in my own life, you can only get away with a system like that for so long.

When I got the news that the imaging had finally caught up to what I’d been saying for years, I literally fell to my knees in relief. Not only was my doctor suddenly one hundred percent on my side, he was elated, because, as far as he knew, this was something fixable.

Only it wasn’t.

What I didn’t know was that my positive imaging was just a ticket to the front of a very long line of the world’s spinal leak patients. Positive imaging only means they start treating you less like a drug-seeking hypochondriac now that you can prove you’re not making it up.

Sorry not sorry. #EndPKD

The kind of spinal leak I have is not the kind most people are familiar with, including the vast majority of healthcare workers I’ve encountered, including my own surgeons. If you pop a leak from an epidural or a car accident or something like that, in most cases all it takes is a (relatively) minor procedure called a blood patch to seal the wound—not unlike patching a hole in a tire.  A lot of times they don’t even have to know where the tear is, especially in an otherwise healthy and “normal” person; in theory the blood migrates to the hole and, as it clots, it seals.

But I am not a normal person. I have polycystic kidney disease, a genetic condition not just of the kidneys but of the connective tissue, which effects all of the body’s structural systems—like the spinal dura.

We are only just learning how widespread and insidious PKD is, just as medical science has only recently developed the imaging technology to track minute spinal leaks. There are only a handful of clinics around the world that specialize in diagnosing and treating them, and each of these sees thousands of patients every year, while every year the number of new entries on the spinal leak forums I follow grows exponentially with people desperate for a diagnosis. A system like this creates a bottleneck, with the few providers struggling to keep up with the glut of need, and a backlog of patients being under-treated or denied any treatment at all.

In amongst these are the zebras—patients like me with rare disorders that make us more likely to suffer spinal leak, and less likely to be fixed.

A kiss for mom after sugery #1
August 2019

In spring of 2019 I travelled to North Carolina for my first DSM at Duke University, home to one of the few spinal fluid leak clinics in the world. They diagnosed the fistula and I had my first surgery that summer.

First scar, Summer 2019
Me and my cane before surgery #3 at the La Brae Tar Pits Museum, Los Angeles, CA
March 2020

(Two days later, my mother died of polycystic kidney disease.)

I didn’t get better.

That November I had new DSMs and surgery #2 in Los Angeles, with one of the original leading specialists in the field, where they determined that surgery #1 had fixed the fistula but sprung a new leak. They patched the leak and sent me home again.

For a very brief time I had some improvement, and for one night–one glorious family dinner at Red Robin–I felt like my old self again, with a healthy brain and an unspeakable feeling of joy to be alive. But then I went into high-pressure, which is a thing that can happen when a leak is sealed but the body has gotten used to producing mad amounts of spinal fluid to compensate. The longer the active leak, the greater the risk of high pressure.

My patch blew after a few weeks, and by Christmas I was sick again.

(That December my surviving brother was diagnosed with Stage 4 lung cancer, which had already spread throughout his body and into his brain.)

In March 2020, after surgery #3 I flew home from Los Angeles two days before the world went into Covid-19 lockdown. Within a few weeks it was clear the latest patch had failed; only this time instead of getting better, I got worse. By May 2020 I was effectively bedbound. Outside of short trips to the bathroom and sitting up for meals, I’ve been living on my back ever since.

I was afraid to travel for yet another round of imaging and surgery without a vaccine, so we stayed home. Between my disease and the raging virus I wasn’t sure if I was going to make it.

But I did.

I call this one “Earth Mother in situ”
Fall 2020

In the year of lockdown my kids went to school online, my six-year-old daughter right next to me in the bedroom where I live, every day, my son logging in to his first year of high school from within the dark funk of his lair down the hall. My husband, an #essential employee, made himself #irreplaceable at his manufacturing firm so we could keep up the co-pays on all my medical bills; in the evenings he took his parenting shift and still brought me dinner to order. In short, 2020 was the most difficult year we’ve ever had to endure as a family, as I’m sure it was with yours.

Thanks to the internet gods for Zoom, though, am I right?

Thrilled to be back in LA. Again.
June, 2021


Finally in June 2021, Tom and I flew back to LA for a third time—fully vaccinated!— for that long-anticipated new go-round of DSMs. It was an epic (and very expensive) journey involving a wheel-chair that reclines 180 degrees, four private vans, four very special planes equipped with lie-back seats, and one very heroic husband, but sadly it did not end in a successful imaging of my current leak.

In August I had a multi-level blood patch at a hospital in Philadelphia that targeted some suspicious masses of cysts along my spine. Earlier this October my latest MRI confirmed that this procedure also failed, which I knew.

And that’s where I am.

Writing about writing:

During all of this I hardly did any writing at all. Tom built me a folding “lap desk” that I can use lying down, but I had a hard time stringing words together when I could barely read the words on my screen. I tried to stay active in forums, but that was hard on my brain, too. I couldn’t remember words, couldn’t focus, couldn’t even stay awake sometimes while looking at the page. But I had a lot of time on my hands.

In 2020 I read “The Beginning of Everything” by Andrea Buchanan, a memoir by a musician who re-trained herself to play piano after enduring a spinal leak. She had a lot of things going for, including a doctor ex-husband and an otherwise normal dura, and she got better after only like a year, while I was in year twelve to fourteen (depending on where you start the count)—but still. She writes beautifully of what it’s like to be in a broken brain, she gave me hope, and she helped shed light on our sorry little unknown corner of the healthcare landscape. Plus, I took piano lessons for like thirteen years and I’d be hard pressed to play “Heart & Soul” for you today, brain damage or otherwise; so I figured if Andrea can teach her brain to be a pianist again, then I can retrain mine to write a novel.

So I did.

Or, I am. It’s a work in progress.

The brain damage thing is still a big problem. My vision comes and goes, my headache never does, and I’m tired a lot. I have a tendancy to type homophones or to juxtapose the letters and sounds of words I’m holding in my head. I never suffered ADD but I now I lose my train of thought all the time and often find myself zoning out while staring at the page. I have compiled several books worth of material on various projects in the last few years, but I’m a loooong way from finishing any one of them. I’m having a hard time in particular connecting the dots of my current fiction WIP, which is a very ambitious and hugely complicated and would have been a major challenge if I had all my pre-leak capacities. As I am, it’s more like a big Fuck You to the looming specter of my mortality.

But I’m invested. I can still be a writer with brain damage. I can be a writer who lives in a bed. I just need some novel supports to help me get there.

Hence this blog.

I’ve been thinking for a while now that it could be helpful to have a place to:

—organize my thoughts

The tragic poet in Victorian nightdress, 2021

—articulate, to address, to write to; a real or even imagined audience, rather than the echo chamber of my own broken head

— counteract the dreadful loneliness and isolation of writing, in the absence of the real-world, real-time connections that I miss

—to chronicle what this is like, writing with brain damage from a (yet)un-fixable spinal leak; particularly in the event that the worst should happen and I don’t manage to meet my writing goals before I either lose my mental capacities or die from stroke or something like poetically tragic that. Cuz it just doesn’t feel right that I should work this hard just to have it all disappear with my hard drive someday. The world should at least know I tried

—(vent. This is hard, y’all, and my heart is full of ghosts.)

But I’ve been putting it off, partly because all the plug-ins need updating and regular maintenance and the whole thing needs a do-over which is just, you know, A LOT for a broken brain. But I did get around to some basic housekeeping, and the rest can be done in good time, so I can’t use that as an excuse anymore.

I was also waiting until I heard back from the surgeon’s team in LA, since I was finally able to get a copy of my latest MRI into the mail and they were due to get back to me a week ago. I had set that conversation up in my mind to be “it”, the end of this miserable chapter of just WAITING, the official beginning of the next part where I know. But in keeping with the pattern, I’m still stuck waiting, this time for the surgeon in LA to confer with the radiologist in Philly, after which (presumably) one or the other will contact me with suggestions for what to do next, I guess.

Whatever it is, I’m tired of holding my breath while I wait to find out if I’m ever going to get better. Doctors are not made better people for wielding that kind of power. There’s always a gaff, a dropped appointment, an insurance loop hole, a golf game, a long holiday weekend between me and that desperately-awaited return call, that all-important word. Always one more thing between me and the rest of my life. After this last go-round I promised myself I’d stop living on hold while I wait for it, even if I have to live it permanently in this broken body.

I guess what I’m saying is, there’s really no reason to keep putting this off. Halloween is, after all, a time for crossing over. So.

Hello, and happy new year.

Shannon Connor Winward
October 31, 2021

UNDOING WINTER is the winner of the
2016 ELGIN AWARD
for Best Speculative Poetry Chapbook!!

Winward_Shannon_Connor_Cov

Thank you, thank you, thank you

to the members of the Science Fiction Poetry Association.

Winter has officially melted.  I feel warm and tingly in all kinds of places!

xoxo

Scott Whitaker Reviews
Shannon Connor Winward’s
Undoing Winter

(From VOLUME 9, ISSUE 6 // THE BROADKILL REVIEW – November 2015)

COVER FROM WEBSITE

Shannon Connor Winward’s Undoing Winter, from Finishing Line Press, explores the relationship between self, myth and history. And for Winward, the past and the self are the wet earth, and the dead. Winward identifies the chthonic impulses that pull on our psyche. Family, the unexpected pain of loving children, these are but some of the themes lying in the winter setting of Winward’s chapbook. And it’s frightening. Thrilling, even.

Perhaps it’s the October chill in the air, and the pull of my imagination towards dark places, but Undoing Winter begins wielding dense and eloquent Dionysian tropes, the kind of musical mythic notes one hears in Plath, Sexton, and Bishop–on occasion, and in more contemporary artists such as Sharon Olds, Jean Feraca, and Beth Bachman. The iconic image of wet rich earth, so tied up with death and sex, is a primal murmur through Winter. And Winward becomes the throat for oracle, wearing a mask, and invoking poetic theatre.

The title poem “Undoing Winter” opens “I went into ground for you. I faced the guardians/of the gates of hell./I gave away my jeweled bracelets/ and marched naked to the cat-calls of the dead/ all to rescue your sorry ass/ and here you are,/ huddled on your mildewed throne/ speechless as a shrug.” The high and low registers of her voice contrast, a kind of static. The music of the “huddled…” and “speechless…” characterize the musical cadence of the poem.

Sonically, most of the chapbook echoes the title poem, they are poems of incantation, for lack of a better word. A catharsis, yes, but also transformative. The latter more important than the former. There is love and solace in her work, and levity, but for the most part Winter is an incantation, a purring engine of anger, desire, and loss.

“I Visit Your Heart” a speculative gem, hums with the kind of glamor a beautiful predator purrs from a long graceful throat. “Your heart on ice is useless to you,/ so while you were sleeping/I had them cut it out, encase it in plastic/ and set it on a platform/ with a plaque that reads: choices.” The heart later becomes a “trophy valentine”, the physical remains of what had been a relationship, a “paperweight.”

What makes Undoing Winter dazzle is the sensuousness of its language. Poetry is, on some level, supposed to be sexy, dark, and dangerous. There are few character hooks in the book, and Winward plays her cards close to her chest, so we don’t have any idea if she is writing about real or imagined events or people. The emotional landscapes of the poems could as easily be from memory or from imagination. Winward does a poet’s’ job and makes the unpoetic dangers of life poetic and mystic, joining in the broad and great opus that is American letters.

So if you go here, you can hear me perform my poem “Beansidhe” – a classic Irish ghost story turned tragic romance – on the SFPA’s Halloween Reading page (which I’m co-editing with poet Liz Bennefeld).

As noted on the page: “The pronoun play in “Beansidhe” can be misleading—it may be helpful to remember that not every narrator is reliable.” “Beansidhe” (the Irish spelling of “Banshee”) first appeared in Ideomancer and later my poetry chapbook, UNDOING WINTER (Finishing Line Press 2014) , which was nominated for the SFPA’s Elgin Award.

If, however, you stay here, you can listen to me, my daughter, and my cat playing with my new headset.

Much thanks and kudos to fellow SFPA’er Diane Severson Mori over at Amazing Stories Magazine for her review of UNDOING WINTER!  In addition to maintaining a regular column at Amazing Stories to highlight speculative poets and poetry, Diane also manages the not-insignificant task of rounding up the spec-poetry related publications and activities for Science Fiction Poetry Association members.

If you haven’t already, please do check out Diane’s thoughts on UNDOING WINTER, complete with recordings of three poems from the chapbook!

COVER FROM WEBSITE

I’m busy getting ready for the DDOA Poet and Prose Writer’s Retreat this weekend (leaving my babies for four days! EEP!) but Diane’s post provides some food for thought that I’d like to revisit later [Watch this Space!!] To wit: while it’s true that none of the poetry in UNDOING WINTER is SciFi – indeed, i think I have all of one poem in my entire portfolio that I’d call straightup Science Fiction – I draw much of my inspiration from myth, folklore, and dreamscapes – all of which are snugly at home under the “Fantasy” category, which also counts as “Speculative Poetry”.

I think Speculative Poetry can be read in layers. The poems are metaphors, yes, but they also speak of their own realities. In my opinion, poems of ghosts, pagan gods, and slipstream are no more or less metaphorical than of any other genre – for what is SciFi, really, but the same, age old questions of the human condition, wrapped up in futuristic tropes?

 

Lookie what came in the mail last week….

 

chapbooks

 

There are many emotional peaks and valleys in the journey towards publication, but certainly the best high (so far, anyway) has to be holding your own flesh and blood (read: paper and ink) book in your hands… and seeing your own happy mug there on the back, in living color.

SO COOL, Y’ALL.

SO VERY COOL.

And as reports of preorder arrivals have begun to trickle in from my friends and cohorts around the globe (yes! I even have a fan across the pond! *waves*) I’m reminded again of how many people have encouraged me on this journey with their love, their facebook/blog shares, and their hard-earned dollars.  THANK YOU, everyone, for your support.

So I haven’t been sleeping very well lately (if why isn’t obvious, scroll back a few posts…) but I have spent the last few days and what brian power … er BRAIN power… I have on getting my little authorly self together.  For starters, Undoing Winter is now on Goodreads!  Please do check it out and, if you liked the book, feel free to leave a rating or a review!

For those still interested in purchasing a copy, Undoing Winter is available through Finishing Line Press.  The cost is $14 plus shipping — OR, come find me in person and buy a signed copy direct from the source! See my CALENDAR OF EVENTS for a list of upcoming appearances.

I’ll be sending out review copies soon, too, so if you’ve got an in with a publication or blog and want to help spread the love for Undoing Winter, LET ME KNOW! You can contact me here, on Facebook or through the usual channels.  I’ll get back to you with alacrity… assuming I’m not napping off the trauma of a sleepless night.

441px-Demeter_mourning_Persephone_1906

Demeter mourning Persephone (Evelyn de Morgan, 1906)

The special promotional period for my poetry collection, UNDOING WINTER, ends this Friday, April 25th.  To mark these final days, I thought I’d say a few words on one of the central themes of the book – katabasis, or “descent”.

From the Greek word for “down”, katabasis is a term beloved by psychologists and scholars (especially Jungian lovers like me).  It refers to a downward journey – “a descent of some type, such as moving downhill, or the sinking of the winds or sun, a military retreat, or a trip to the underworld.”  (See the Wikipedia article on katabasis here.)

The Easter holiday just passed celebrates a katabasis of sorts, and my favorite kind: the ancient story of rebirth, or return.  Like Christ, many figures of myth undergo a journey into death, darkness, or despair, often in order to accomplish something superhuman – to resurrect a loved one, perhaps, or to bring a message of love and hope to mankind.

The titular poem in my collection, “Undoing Winter”, explores several other examples of katabasis.  Perhaps the most obvious to fans of Classical myths is the story of Demeter, Goddess of Agriculture and mother of Persephone, a hapless maiden who was abducted in the bloom of her youth by Hades, Lord of the Underworld.  As the story goes, Demeter in her grief defies the mighty Zeus, leaving the earth to languor in a perpetual winter so long as Persephone remains in her dark prison (spoiler alert: eventually Demeter wins her daughter back, though at a cost).

I faced the shining wrath of the sun
on your behalf
while you cried your soul away.
I made excuses to the earth and sky
and fed the peasants gravel.
Give it time, I said. She is composting.
Come again tomorrow.

Ishtar_goddess

Burney Relief / Queen of the Night

– from UNDOING WINTER*Finishing Line Press

Ever the fan of layers, I wrote UNDOING WINTER with other versions of the descent in mind as well – specifically Orpheus (the mythic Greek musician/poet) and Inanna (Sumerian Goddess of Awesomeness), both of whom braved underworld trials in order to bring back lost loves.

Arno_Breker,_Orpheus_u._Euridike(1944)

Arno Breker, Orpheus en Euridike (reliëf 1944)

 

 

 

 

 

It should be no surprise that such stories hold a constant place in the repertoire of faith– (and art, for that matter!  How many modern fictional heroes can you think of who manage to fight their way back from certain death – and at what price?)  As mortal beings, we face the loss of loved ones and of self at every turn.  The hope that there is life beyond death is naturally something that occupies our collective psyches.

Yet stories of resurrection needn’t always be taken literally, nor do they only belong in the realm of heroes and gods.

In psychological terms, katabasis can be a metaphor for depression.  This, too, is one of the central meanings of UNDOING WINTER, both the titular poem and the book as a whole.   Though for me, the journey in and out of clinical depression happens to be a lifelong condition, many people (most, even?) have or will experience the long dark night of the soul.

This, I think, is another reason why stories of katabasis are so eternal.  Life is hard – so hard, sometimes, that giving up or giving in seems preferable.  Like the heroes of myth, it often takes great will or faith to overcome the lure of the dark.  Sometimes returning to the light hurts like hell.  As lovers of stories, we’re not just hoping to hear that death is not the end of us – we’re looking for reassurance that we have it in us to survive.

 

10177300_10152355015669800_143179217804452856_n

Ultimately, “Undoing Winter” is about self-rescue.  The poem gives homage to – and takes liberty with – a powerful archetype found again and again in our collective archives.  The collection, UNDOING WINTER, carries the idea even further.  In this arrangement, I hope to bring the reader into some dark places… echoes of where I have been, and what I have endured… but there’s a reason for it.  I promise.  Because, for me, katabasis is not just about the journey down.  It’s about coming back… by tooth and claw, if necessary… to find we are stronger… better… more ourselves than ever before.

COVER FROM WEBSITE

 

 

Want to show your support for UNDOING WINTER? Pre-order your copy today at Finishing Line Press.

Dear Friends,

Winward_Shannon_Connor_CovAs you may have heard, my first collection of poetry was selected for publication through the New Women’s Voices Chapbook Competition from Finishing Line Press.  The collection, titled UNDOING WINTER, will be released as a limited edition chapbook (short book) on June 21, 2014.

UNDOING WINTER contains some previously published poems along with others debuted especially for this collection.  With subjects ranging from romantic love to motherhood, fantasy to history, death to resurrection, UNDOING WINTER represents nearly twenty years of writing, and is an exciting milestone in my creative journey. 

UNDOING WINTER includes original, color cover art, “Moon Shadows”, by my long-time friend and mentor, Lisa Lutwyche.  Poet, playwright, watercolorist, and actor, Lisa has published in the US and the UK, and has taught Creative Writing and Watercolor at community arts centers for over twenty years.  

The press run for UNDOING WINTER will depend on the number of sales made during a special, pre-publication period that is going on NOW through APRIL 25th.  If you would like a copy, please don’t wait – you can reserve a copy online at Finishing Line Press.

The cost of the book is $14.00, with a special discounted shipping cost of $2.99 for orders placed by April 25th.

Please do pass this along to anyone you think might be interested.  I encourage you to place all orders by April 25th, as this will help determine the ultimate press run. 

All orders will be shipped after June 21, 2014. 

I want to give heartfelt thanks to my family and colleagues for your enthusiastic support, both personal and professional.  This has been an amazing year.

 

UNDOING WINTER – coming June 2014

Brigid's Brambles mod

“Brigid’s Brambles” by Shannon Connor Winward

 

Also very exciting: My first  poetry collection, UNDOING WINTER, has been contracted for publication by FINISHING LINE PRESS.

UNDOING WINTER is a mix of previously published poems and new work, in chapbook form.  The collection deals with speculative and mythological themes as well as biographical (or semi-biographical) material.

The release date is tentatively scheduled for June 21st, 2014, with advance copies and pre-publication sales beginning in mid-March.

I will, of course, post updates as they become available.  Watch this space!