18 months of living on my back in our bedroom was more than enough.
Last summer I told my husband that I needed to move downstairs permanently so as to be closer to the kitchen, the kids, and the yard.
We made a plan to turn our family room (once my mother’s dining room) into a finished master bedroom by Thanksgiving. And we made it! But only by compromising the definition of “finished”.
Tucked between the garage and the porch, our new bedroom is the coldest in the house. January and February were rough (but then again, they always are). Also I still have to use the upstairs shower, which is an event; and in lieu of a door Tommy put up a skeleton wall and hung strips of tarp, which block light but not really sound.
Still, it’s cozy, it gets the job done, and it keeps me close enough to the daily ebb and flow of family life for me to be a part of it, as opposed to isolated upstairs alone like someone’s sick grandmother in a tower, winding down her life in the same room where she takes her meals and never seeing another preson unless they make a point of stopping by.
Progress on the rennovation, since has been quite slow. Aside from the whole “kitten invasion” distraction, we’ve struggled with cold weather-induced apathy, health issues, time-space management problems, sleep problems, communication problems (I speak poet, he speaks engineer), Virgoan analysis paralysis, and global shipping delays,; but with the weather getting nicer, I have high hopes for a productive summer.
I WILL have that full bath and a fully-insulated bedroom – with door – by next Christmas.
Meanwhile, it took a few months for me to fully adapt to my life in this new, slightly larger fishtank. Mentally and emotionally, I’m worlds better than I was. I can walk from room to room. I sit at the table for most of my meals, with my kids. I can fill the birdfeeders and play with kittens.
Physically, I’m maybe slightly worse off — an armchair is not much of an upgrade from a bed, as far as the body is concerned, and the more time I spend upright — even in an armchair vs the bed — the harder it is on my brain. I have very low energy, I’m sick most days, at best, and I feel much older than I actually am.
But like with the downstairs-but-no-door situation, by sitting upright or walking around and otherwise doing more with the upright time I do have, I’m making a conscious tradeoff to put up with brain-drag and armchair body for a better overall quality of life.
I have been writing A LOT. Like, all the time. Every day, all day, or at least until I can’t think to put words together and can’t see the screen anymore because my contacts have become like glue. I’ve been working on my novel (or novels); I started submitting again and sold some stuff; I rebooted Riddled with Arrows; I’ve even started reworking my shelved poetry manuscripts. I still feel pulled in all these directions, but I’m getting better at switching between them.
In short, I spend as much time writing as I can, which, aside from the disability part, is all I ever really wanted to do with my life. So that’s pretty cool.
My biggest problems lately is actually that I”m writing too much. How’s that for irony?
I find that I’m still struggling to let go of the anxiety that became attached to writing somewhere along the way–the triage-mode approach to life that I had to learn as a working student, and then a working mom, and then a stay-at-home/ homeschooling /special needs mom and working author. The only way I knew how to keep all those plates spinning was intensely. How badly did I want it? Very.
Now, even though I’m no longer under the same kinds of pressures, I still have the same intense and desperate feelings; and though I love the productivity that these things drive, I fear I’m pushing my body too hard.
If I collapse for three days after polishing a chapter or launching an issue, or if I have to skip three nights of mommy-daughter time because I’m drained from eleven straight hours of anything writing-related, can I really say I’m well?
But in triage-mode, I used to be able to do a hell of a lot more in one hour than I can now in a day without distractions. That may be hyperbole, but not by much. The time goes by so fast, is what I’m saying, and I’m rarely satisfied with what I’m able to accomplish in a given day anymore.
And if I’m being honest, I’m always thinking about that ultimate writer’s deadline, which seems uncomfortably close given the way disease and bad things seem hover over us like stormclouds anymore. I think about all the books I thought I’d have written by now, all the stories I thought I’d tell, and it’s powerful strong motivation to just keep push through the pain, at least until something inside says “okay, that’s good enough, stop.”
At least I’m self-aware, anyway. I recognize that triage served its purpose but that something else is called for now. Smell-the-roses kind of stuff, I’m thinking. Anyway, I’m using this time to be productive, yes, but also to take a long, hard look at myself and my #lifegoals in light of the plot-twists that life has thrown at me.
After a lengthy medical hiatus Riddled with Arrows Literary Journal is back with a SUBSCRIBERS ONLY stealth issue. RwA 5.1: “Candy Hearts & Little Literary Love Notes” is currently running 1 dz. once-a-day features of poetry, prose, and visual art through the end of February, each one hand-picked from among our evergreen and steadfast subscribers.
But that’s not all! Visit our 2022 Theme Calendar for a sneak peak at upcoming projects, submission dates, and further details.
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.
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.)
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.
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 calledSpontaneous 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.
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.
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.
(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.
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?
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
—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.
My husband and I love to go thrifting when we travel. We do it at home, too, but there’s a special thrill in doing it in new places; unfamiliar country. Some of the coolest things we own, and some of the coolest things we’ve *seen* together, were in thrift stores, antique malls, secondhand shops up and down the coast.
This past year I find myself spending more and more time moving down the clothing aisles in these places, wistfully fingering things that couldn’t possibly fit me now. If I ever had a style it would be this: Bohemian. Borrowed. Thriftstore chic. Once upon a time I bangled, layered, wafted my way through the world in vintage glamour. Oh, how I miss that.
Oh how I miss me.
What I want, more than anything, is to be a part of the world again in this way: I want to dress in found drama. I want to reflect back the joy of life, the fun, the romantic and the frivolous, the freedom in an outfit meant to be performed.
I want to perform again.
I want to be part of the tribe again. The poets and writers. The artists and songsters. I want to go under the lights in something that sparkles. I want to do that again, and often, for many many many more days. When I’m gone, I want my children to say that is how I spent my life.
Not like this. Not in this trauma body, here in this soft chair, in the same few house gowns, clothing picked for how it accommodates pain rather than how it will frame me on a stage.
Once, my mother lit up any room she entered. Once, she carried the glamour. Once she performed, in her own way.
But my mother got so sick that she never left her chair again. She lost touch with who she was, and her light went out. All I have of her now are far away memories, a grief that wants to swallow me, and her things–my favorite parts of her wardrobe stuffed into a closet now bursting with drama I can’t wear, for a life I too misplaced, because of disease.
I can’t control what’s going to happen. If I can’t get better, maybe the best I can do is be grateful for what was, and honor it by letting it go with grace. Like my mother did. I fervently hope it won’t come to that anytime soon. But if it does.
Remember me as I was, not what I’ve become. Dress me in layers and treasures, the more eclectic the better. Dress me in poems.
I used to love yoga. I was super stretchy and capable. Now, though, thanks to my various Conditions and traumas, I have a totally different body. I have a pain body.
One Thing I’m beginning to realize: since I’ve essentially been ignoring my body for so long–ten years now–re-learning it is going to mean tapping into ten years’ worth of repressed pain. I found myself crying by the end of the session–not in distress or anything; just over-full, like a drippy faucet.
I suppose if I don’t find a way to modulate all that pain as it comes out, it could flood something.
This photo was taken at a reading earlier this fall, the release party for an anthology I’m excited to be part of. It was a good night. I had fun. I felt good.
But also I didn’t feel good–nights are hard for me, and that was a higher-than-usual pain night. I spent half of it hiding in dark corners trying to out-wrestle a migraine. I left early. I crashed the next day.
When I look at this photo, what comes to mind is the 10 of Wands. In tarot, this is the card of the over-burdened worker: bent, weary, barely able to take another step. This dude is not well.
This is the truth that I have come to: I am not well.
Fanny needs to take a damned load off.
For ten years, as of this December, I have lived with chronic daily migraine. Some days are better than others–but, to be clear, I have had a migraine every single day. Every day. For a decade.
That takes a lot out of a person.
To anyone inclined to message me with well-intended suggestions, please don’t. I’m not a fan of unsolicited advice in general, but particularly about such a subjective experience as disability. Whatever it is–copper earrings, CBD oil, botox injections, your boo the chiropractor–rest assured, I’ve heard about it.
What you may not realize is this: over the last ten years I have been through multiple medical marathons trying to find either a cause or a cure. I have a backlog of really awful stories about doctors and panaceas. I’ve got a file cabinet full of those stories, actually. And even if I haven’t yet tried your thing, please believe that I’ve been there, done that. If it’s that supercalifragilistic, I’ll find out in my own time.
Right now? I’m tired. Also I’m still very sick. Worse than when I started.
For 8-9 years out of 10 my migraines were fairly well managed, thanks to prescription pain medicine–not ideal, no, but sufficient to get me through the long crisis of having an atypical child with the world stacked against him. And then a surprise child who has her own net of tricky needs. I got by for a very long time–hell, thrived even. But that strategy has run its course.
Now, in addition to the daily migraines that are at least mostly kind-of managed, I’ve developed a new type of daily (yup daily) Super Migraine that quite literally stole a year of my life. These migraines are so bad it can be hard to even get out of the chair, and they don’t give a squirrel’s ass about my pain meds. They laugh at my pain meds, Ha Ha, and then they just go on drinking my life’s blood from my skull like fucking Pain Pirates.
Also. As I’ve mentioned here and there, I am in the early stages of the same kidney disease that my uncle died from and that my mother is dying from. So far all of my blood panels come back good enough, but my kidneys are very large and cystic and painful. They slow down digestion, pick fights with my girlie-time problems, and feel generally like a sack of rocks strapped to my torso.
Also, also: I have injured discs in my neck and my lower back. They flare up fairly regularly. I have neuropathy and widespread pain that is likely related to the spinal stuff. Spice of life.
None of this is brand-new. The thing is, I’ve been focused on other things (my kids and my career) for a long time, without enough spoons left to give gentle, sustained care to these things in me that are hurting.
I think this may be the root of the writer’s block I’ve been suffering since last summer: my body is in trouble. Real trouble. And if I spend all my time in my mind, just putting band-aides on the problems, things are never going to get better.
BUT. The good news is, I think a change is finally before me. Having both kids in school full-time is a huge thing. Having my oldest finally stable for the first time since toddler-hood–that’s also a huge thing.
Huge as in… I have space now. I have time. I can breathe.
Godz willing, maybe I can even heal.
So that’s what I’m going to be working on for the foreseeable future: cultivating a better relationship with my mortal coil. I suspect I will be posting a lot about it. Fair warning.
I’m starting with honesty. I’m sick. I hurt–a lot. There’s a lot I can’t do right now. I need to slow down, take on less. I need to ask for help, or say no. I need to listen to my physical self and speak for it. I need to be honest.
And honestly, I feel lighter just admitting this–to myself, to my family, and to the You.
A Plague of Shadows is the latest fiction collection put out by The Written Remains Writers Guild, my hometown writing tribe, in cooperation with Smart Rhino Publications. By design, all of the stories in PoS feature both haunted places and haunted people—basically ghost stories on steroids. My post-apocalyptic “To Heart’s Content” appears in this anthology, alongside local authors and well-known horror wordslingers in an eclectic joyride of subjects and styles.
PoS Editor and Written Remains matriarch J.M. Reinbold asked me to share a few words about the origins and inspiration of “To Heart’s Content”.
Although it appears as a stand-alone, “To Heart’s Content” is the continuation of a story called “Lost & Found”, which was first published in PerVisions (formerly Persistent Visions) in 2016 and reprinted in the Endless Apocalypse anthology by Flame Tree Publishing in 2018. Both stories revolve around Danae, a young woman whose psychic connection to the landscape has helped her survive in a post-apocalyptic United States.
Illustration for “Lost and Found” (Persistent Visions, September 2016). Artwork by Kathryn M. Weaver http://kathrynmweaver.com/
In “Lost & Found” we first meet Danae in the midst of a spiritual crisis: her powers have seemingly left her, and she is merely going through the motions with her survivalist lover, when she stumbles upon a clue to the whereabouts of an old flame. The story ends with Danae knowingly leading her companions into danger in order to appease the longing of her own heart.
“Lost & Found” was a work that was a long time coming, inspired by my love of the post-apocalypse sub-genre as well as by my own recurrent dreams. I realized even as I was writing it that it was actually the beginning of a much larger story—one I plan to finish, one day, but not yet, as I’m far too busy with mundane life for the kind world-building a book like that would require.
Imagine my surprise, then, when I sat down years later to write a ghost story for A Plague of Shadows and found myself returning to those characters. The first thing to come to me was the love scene under the stained glass, and although much about the setting and even the faces were strange, I knew who they were. I recognized the way they feel about each other, and it all came rushing back. It was an absolute pleasure to write.
“To Heart’s Content” still leaves much of Danae’s story open, but I think it covers a lot of territory in a satisfying way. At least I hope so—I hope folks like it. If enough people bug me about it, maybe I’ll finally write the whole damn book. 🙂
Freshly signed and enspelled, copies of my new book will be flying out from the Newark post office forthwith.
If you too would like a signed copy (complete with personalized spell), you can purchase one here (use the Buy Now button).
Local folks can also pick up a copy from me in person at one of these upcoming events:
A Plague of Shadows Book Launch — Celebrate the publication of A Plague of Shadows with the Written Remains Writers Guild. Readings, Prizes (including a free copy of The Year of the Witch), Food and Drink, Music, Fun, and Dark Arts Gallery Exhibit! Newark Arts Alliance. Saturday, October 6, 2018 ~ 6 – 9 PM
Spelling Our Voices: The Power of Writing Magic and Fiction Witches — A Written Remains Get Out and Write workshop featuring Shannon Connor Winward (me!) at Hockessin Public Library. Saturday, October 27, 2018 ~ 1 – 3:30 PM
Hockessin Art & Book Fair — A celebration of local indie authors and artists at the Hockessin Community Recreation Center. Come visit “The Poets’ Corner” Shannon Connor Winward (also a featured reader), author of Undoing Winter (Finishing Line Press) and The Year of the Witch (Sycorax Press) and Lisa Lutwyche, author of A Difficult Animal (Saddle Road Press). Saturday, November 10, 2018 ~ 11 AM – 3 PM
One year ago, my son started at his new school. This marked a major turning-point in our lives—the end of an exhausting struggle with the local district and state that spanned years and, at times, pushed all of us to the brink of despair. Prior to this, the Kinglet’s situation was so dire, his mental health so precarious, that we’d had him homebound with (largely ineffective) tutors and therapists for most of fifth grade and part of fourth. Even after we successfully argued with the DOE for alternative schooling, it still took a quarter year to find a suitable placement—none of the special ed schools that we liked wanted to take a risk on a volatile (that is to say, “challenging”) child, and none of the ones that would take him inspired any confidence (most were just a step up from juvenile prison).
It was in late April of 2017 that we found a match with a small Philadelphia private school that focuses on higher-functioning ASD kids. The transition was not easy, but philosophical and pedagogical differences between this school and our home public school district were manifold. Over the past year, the Kinglet has made remarkable progress, not just in catching up with the schooling that he missed being homebound, but also with the life skills he so desperately needed but wasn’t being taught. While we’re still not able to fully relax (will we ever?), we’ve never held our breath this long without a major setback, a devastating crisis. Our latest IEP meeting was a (comparative) breeze—the changes are minimal, agreeable, reasonable. In short, he’s doing really, really well.
MEANWHILE, our daughter started part-time preschool in the Fall—an integrated special ed preschool, actually, in
The writer from her sickbed, with guest.
the same district that wasn’t up to educating our son. So that’s fun. Compared to the Kinglet, the Empress’ developmental delay (mostly in speech) is relatively mild. In fact, it’s about as mild as it could get while still qualifying for spec ed intervention—although the nuances of “mild” and what that means in terms of services has already become a subject of debate between her parents and her team. Silver lining, having been through all the fires with the Kinglet we’re neither ignorant of our options nor shy about using them, so the Empress has already had a top-notch third-party evaluation for speech & language, which we are about to bring to the IEP next month. Otherwise, the Empress is blossoming into a hysterically funny and sassy little pixie who knows herself and misses nothing and lights up our world like the miracle she is.
As for me… having both kids relatively stable and out of the house at least *some* of the time is lovely, although it’s not as revolutionary to my life as I’d imagined it would be. I had planned to use this time to work on a novel, and I tried, but by December of last year it became clear that I’m blocked. I’ve been creative in other ways, most notably with my online lit journal, which is very satisfying, but producing work of my own has been incredibly challenging. At times even composing an email was beyond me. I’ve made progress—some blurbs, some poems. But no fiction. Given that the fellowship I won this year is for fiction, this is especially demoralizing.
I have spent a lot of time thinking about this block. I spent all of 2018 thinking about it, actually, up until my health took a nosedive in late March/early April. It was actually a relief to think about something else (how sick I was), except then I got so sick I could barely hold my head up, and that scared the shit out of me. Not being able to work, like, at all, not just writing but all the daily things I HAVE to do, like care for my children…
Although my health issues are not resolved yet I am doing much better now. I’ve had some time to catch up with the minutia, and even a few quiet days to consider where I am, and what’s next. Which is what this post is really all about.
I think the long creative block was (is?) recovery time. Enforced by who, I don’t know (and I’d like to have a word with someone about it, yes I would). I didn’t *want* downtime, but the truth is I wasn’t well. Things got better with the Kinglet over a very short amount of time, but the trauma that we—that I—went through before that was intense and extensive and, in all seriousness, could have killed me. That isn’t something you just shrug off, apparently. Why I couldn’t have worked through it with writing, IDK, but anyway. That’s how it went down.
Now I think maybe the sickness was an extension of that. If we’re going to look for existential reasons for things, maybe the creative downtime wasn’t enough—maybe thinking about it obsessively, even thinking about it in terms of self-care—just wore me down until my body couldn’t take it.
Or maybe it’s just a shitty fucking coincidence. Or maybe I’m cursed.
Either way, IDK if I’m out of the woods NOW, creatively or physically. I know I feel different, but I don’t know what that means. I don’t know what to do next. I don’t know my purpose, or how best to eke meaning out of whatever life I have left. I don’t know why the clock always seems to read 11:11 when I look up. I’m trying to work all of that out.
An anti-vaxxer in my local Autism parent FB group posted about the latest CDC stats (suggesting an increase in childhood ASD diagnosis over previous years, up to perhaps 1 in 59, or thereabouts) . She describes it as a public health emergency, basically trying to rally an Angry-Mom revolution to force the government to take the Autism “epidemic” seriously.
On the surface, I agree that more research is necessary. We still have a lot to learn about Autism, biologically speaking, and we have a looooong way to go in terms of changing the social and systemic paradigms that make it harder for people on the Spectrum to navigate their lives.
I have a problem with words like “emergency” and “epidemic”, though. For one thing, they portray these rising statistics as an Autism outbreak—something happening more frequently—rather than a product of how we count. Our awareness of Autism is increasing, we’re looking for it more closely and more broadly, thus we’re finding it. That doesn’t mean it wasn’t always there.
My kid, for example. Extremely verbal, academically above-average, restricted interests (video games & spongebob, at the time) mainstream enough to be shrugged off as normal, absence of obvious stimming behaviors (at the time). It took almost eight years to get an appropriate diagnosis even in the midst of all this increasing awareness (2013), and still it was a battle to get all the “experts” on the same page. A generation ago, he would have been overlooked, diagnosed with something else, or not at all. “Bright but unpleasant” maybe. And he would have been worse off for it, I have no doubt.
But my bigger issue with the “epidemic/emergency” narrative is that it’s flat-out insulting. Even when the alarmist moms leave mention of vaccines out of their rallying-cry, they’re still pushing this notion that Autism is a disease, a horrible thing that crops up and eats people (read: through vaccines) and must be stopped. They talk about how much suffering Autistic people endure because of their Autism, they talk about what a drain Autism represents on public resources—the costs to educate, medicate and maintain them.
As a mother of a person with Autism I can speak for exactly one person with Autism (and that only a step removed, and in translation), but the suffering that my son and our family have experienced firsthand is not caused by Autism. His (and our) suffering comes from misunderstandings; it comes from prejudice and a dearth of resources and opportunities, things which result in the marginalization of an otherwise healthy and happy person who happens to be different from his peers.
Likewise, when these alarmists bemoan the “astronomical costs” of Autism to our communities, our schools, what they’re really saying is that we should protect the status quo—that cookie cutter approach to education and society at large—rather than invest in new paradigms, new ways to teach and employ and treat and engage, ways that recognize and embrace neurological diversity. They are saying people with Autism are too much trouble, and need to be snuffed out. That’s ableism, at best (although I think there’s another word for it)—and yeah. I have a problem with that.