Last week I finally got to take a much-anticipated field trip to the Soda House at Hagley Museum, where they keep the historical DuPont company archives.
Many of the 19th Century powder mill records are available online, but not all. As a descendent of several powder mill families, I’ve been dying to see the ones that have not been scanned, in the hopes of resolving some long-standing mysteries.
We brought my wheelchair so I could lie down if needed, but I opted not to use it – laid my head on the table a lot, and otherwise pushed through more than I maybe should have, but I didn’t want to break the momentum, nor leave without getting what I came for.
Sadly, I did not find the McGuffin I need to unlock history, but I did find a great deal of new information, and came away with a more detailed understanding of the relationship my ancestors had with the mill, spanning multiple generations.
I have to say it was quite a feeling, to handle 160-year-old ledgers, to see my surname in some bookkeeper’s careful cursive, to touch the “x” where a great-great Irish uncle marked his consent, to discover my great-grandfather’s name (which is of course my father’s name) in those pages, earning $4.00 a month at age eleven, fourteen, sixteen, trying to step up to fill the shoes of an older brother maimed in a cooper fire… it’s humbling, and has a way of quieting the spirit.
Speaking of quiet, we also visited the family grave at St. Joseph’s on the Brandywine, which we didn’t even know was ours until I had some lucky research breakthroughs this past Christmas.
One couldn’t ask for a better day to visit, nor for a nicer spot in the cemetery for the repose of one’s ancestors.
I was so moved by the toning of the churchbell that I tried to record it–instead I missed it, hit record only when I thought I was done, so here’s a clip of me putting my phone down to enjoy the peace of the moment.
The stone is set off by itself beneath a venerable old tree. It has a view of the blue sky and the canary yellow walls of the church. It’s right by the stone walkway leading up to the chapel, where the President of the United States walks on his way to Mass, along with countless descendants of those brave and hard-working Irish who are memorialized at the entrance.
Officially, the grave belongs to two children, my great-great uncle and aunt, as theirs are the only names on the surviving headstone. After much investigative research I’m quite certain my great-great-great grandmother is down there too, along with whatever they buried of her husband and brother-in-law in lieu of a body. Someday I’d like to petition for the right to add a marker with their names on it, but for now it’s enough to have found them, to know they’re there, and to finally have the chance to pay my respects.
It was a poignant time for such a thing, right after Lughnassadh and tucked between my brother’s Fiftieth birthday (just as he begins hospice for Stage Four lung cancer) and the third anniversary of our mother’s death. Family is heavy on my mind these days, for obvious reasons. There’s a part of me that feels as if a race is on to solve all the still-outstanding mysteries, wishing I had all the answers to our family story while I still have family left to tell. Wishing I’d known what I know now much earlier. Wondering WTF it all means, in the scheme of things.
The only thing that separates us from the bones of our ancestors is earth and time.
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.
Yesterday a really smart lady I know argued that the “for a cost of a cup of coffee” phrase in fundraising is a guilt-based trope—it’s better, she says, to focus on all the good things your cause has done already, and how much more you could accomplish with monetary support. So, for the last day of the Riddled with Arrows “Feed the Writers 2018” crowdfund campaign, that’s what we’ll do!
The Good We’ve Done So Far:
Riddled with Arrows Journalwas launched this year in order to fulfill a unique niche in the literary landscape: we exclusively publish writing about writing. That is to say, our interest is in metafiction, metapoetry and writing that celebrates the process and product of writing as art. No other literary magazine on the scene today serves this genre—in fact, many markets actively discourage writing about writing. With Riddles with Arrows, we aim to provide a safe haven for poetry about poetry and prose about prose. More than this, we seek to compile a body of literature that flies in the face of this arbitrary prohibition against Writing writing.
Thanks in part to the generous support of our friends and fans, we were able to produce three gorgeous issues in 2017 (plus one forthcoming), featuring award-winning authors and never-before published wordsmiths, genre writers rubbing elbows with literary literati, weird fiction romancing ars poetica, inspirational illustrations, and interactive hypertext—everything we’d set out to do and more. We nominated for the Pushcart and other prizes, and earned recognition as one of Duotrope’s fastest-responding literary markets.
Riddled with Arrowswas also designed to be a writer-friendly market, and we remain committed to that goal. As such, we:
never charge for submissions
offer at least a token payment to all contributors
encourage simultaneous submissions and reprint submissions
require no period of exclusivity after publication
How your contribution could help:
In 2018 we hope to produce at least three more issues of Riddles with Arrows, including both themed and open issues as well as a summer contest with cash prizes. We want to expand our non-fiction offerings with lyrical essays, weird scholarship, and other I-don’t-know-what-to-call-this artifacts. We have plans for a virtual library, a blog, and more hypertext hijincks—goals which can be made all the more meta-tastic with contributions from our literary friends and family.
If you’re a fan of writers and the work we do, we’d be thrilled if you’d consider sharing a few dollars to help us reach our goals. To find out more, click this link now!
I usually have my hand with me when I go places, and sooner or later I’m bound to look at it. So if I need to remember something really important, that’s where I put it. Note to self: Library! Call Mom! Shadow People! (wait, what?)
The dangers of being forgetful AND having an active imagination, though… The other night I looked down at my hand and saw THIS – with no recollection of having put it there, or why.
So I’m like, Proof… of what?
It was funny, for the first few minuets – but the more I tried to remember what it meant, the more I had NO IDEA. 40 Proof? Proof… of aliens? Proof of life??
I mean, where would YOUR mind go?
After about twenty minutes I remembered – oh, right. I needed to get off my ass and respond to the proof of a poem I have in an upcoming magazine issue.
Which is good, because I was beginning to think it got all MEMENTO up in here.