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 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.
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.
Hello, and happy new year.
Shannon Connor Winward
October 31, 2021