Writing about Disability and Illness… in Pittsburgh and online!

On August 12, I will be leading a one-day workshop, with Creative Nonfiction on “Extraordinary Embodiment: writing disability and chronic illness” in Pittsburgh. Yay! If you (or yinz) are in the area, I hope you’ll consider joining me.

Illness and disability are universal human experiences. But too often written works about these experiences can be narrowly categorized by reader expectations, and these constraints can shut down our creative work and our inquiry. And they leave too many stories untold.

In this day-long workshop, we will discuss the expected frameworks for “writing the body” and how we can write into and against those expectations. We’ll talk about what works of illness and disability we need to read and then write toward those needs. Attendees will have opportunities to respond to several writing prompts and share new work. We will also discuss the role of research and voice in writing these narratives. Participants will be provided with book lists of recommended creative nonfiction on writing disability and will have time to share their own recommendations.

Here’s the link to register, and the cost is $79 before July 24: https://www.creativenonfiction.org/products/extraordinary-embodiment


Teaching about writing chronic illness and disability isn’t an easy “how to” for me, nor do I think there’s one way to do it. Instead I am learning to watch and analyze my own writing to try to understand what I actually think about this topic. I think the ways of writing this broad human experience are completely open for discussion. What I’m interested in right now are the ways in which I initially focused on explaining my illness to non-afflicted people, and how in some ways that attempt to “bridge the gap” shut down my writing on the topic. Only when I freed myself from that “explaining” role did I feel free to describe the experience and write what I needed to read. I imagine that my own thinking on the topic will continue to evolve, but there’s some connection for me between writing the world as I experience it (not as a human interest piece) and the idea of dignity in illness and the “normal” of extraordinary embodiment.

Book cover of Thomson's book Extraordinary Bodies, with image of a Frida Kahlo painting in which Kahlo is in a wheelchair and wearing an artist's smock, holding a painting palette and painting a portrait. 

The phrase “extraordinary embodiment” was first brought to my attention by the writer Sarah Einstein, and the phrase grew from the concept of “extraordinary bodies,” as described in the title of Rosemary Garland Thomson’s 1996 book from Columbia University Press that launched the field of disability studies in literature, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature.

 


And… if you can’t make it to Pittsburgh but are interested in the kinds of things I’ll be teaching, I have some resources for you!

First…

Metaphoring Into Pain” is an hour-long video of a writing workshop with exercises on writing about chronic pain and other physical experiences, presented as part of the 2017 Survive and Thrive online summit on April 28, 2017 I read a short piece from Pain Woman Takes Your Keys and then participants have an opportunity to do writing exercises related to health and illness with a focus on finding metaphors for physical experience.

URL to watch recording: http://bit.ly/2oU35mo


Second…

Michael Noll put together a great exercise related to “Metaphoring” as an analysis of the essay “The Lava Lamp of Pain” (originally published on The Rumpus and now included in Pain Woman) on his blog Read to Write Stories.

He writes, “When people (and you still hear this sometimes) say that writing can’t be taught, what they really mean is that raw imaginative power can’t be taught. Either your mind can come up with something as great as “lava lamp of pain” or it can’t (or it will come up with something in between can’t and great). But what can be taught is the creative process that creates the opportunity for an imagination to be as great as it can be. This is what Huber does again and again in this essay.”

He analyzes the progression of metaphors in the essay and then gives neat writing prompts.

 

 

One of my son's plastic soccer trophies, a gold plastic cup with a soccer ball on a stone base.

Post-Publication Book Awards

After my first book, Opa Nobody, was published, I suddenly realized there was a thing called post-publication book awards. I was in the flurry of trying to promote the book and therefore getting used to this foreign book-promotion world. I was also working full time, and, to make things complicated, I the mom of a pre-schooler and was just about to get divorced. So I was overwhelmed and had no money. I found a few of these awards, and the fees shocked me–some run around $100 or more. I understand the reasons for those fees (sort of) but at the time, even though I was very concerned about my career, my attitude was: I’m overwhelmed, and anything that expensive has to be a scam. I also didn’t understand which awards were taken seriously and which weren’t. And what would it get you, anyway, to win those awards?

One of my son's plastic soccer trophies, a gold plastic cup with a soccer ball on a stone base.
One of my son’s plastic soccer trophies, a gold plastic cup with a soccer ball on a stone base.

It turns out that those awards–almost no matter what they are–stay in your bio and people love them. It’s a short-hand way to attest to your perceived “quality” as a writer. By the time I realized this, I had just started to research these awards, and at that point, most of the “year after” deadlines had past. My second book came out in 2010, during a grueling period of legal crap and other stuff, and I once again was treading water and did not have the cash to plunk down for all of these. So I entered two.

Do I wish I’d entered more? Yes. I thought those were pretty good books, though I wake up sometimes in the middle of the night realizing I am having a dream about editing them. (Let it go!) And I wish they had had a chance to get that little sticker and get considered among their peers.

Do they matter, and why? If you’re on the academic job market, hiring committees with people outside your genre use them as some rough handle on whether you’re a “good writer.” Reviews are sometimes hard to parse for people not immersed in the writing world. And those awards are good for your bios and make you sound impressive. Even if the award itself is something they’ve never heard of, being selected the winner is good. But I can also see why people don’t enter them, and this is something important to know about all these awards: they are chosen not among the broad field of books published for the year but among writers who were able to buy a ticket to enter. That invisible difference means a lot.

The sad thing is that I cannot go back from the present day and give the writer I was a few years ago some more cash to shift from the categories of “food” or “daycare” and toward “self-promotion.” And I can’t give myself the awareness of the calendar of these awards; some pass before you know it and others are kind of hard to find and don’t advertise much. Some are focused on the region you live, the region you grew up in, or other qualifications, so my list is skewed Midwestern.
One thing I can do is share my calendar of awards with their deadlines for your future reference, should you need them. And am I entering Pain Woman Takes Your Keys in everything I can, now that I have money? Yes. Finally. Eight years after publishing my first book. And to allay my guilt for the un-evenness and confusion of this mysterious opportunity, here’s my list. If you add other awards in the comments, I will add them to the blog entry.
  1. MIDWEST: Society of Midland Authors.  Deadline Jan 7 for previous year, $10
  2. Foreward Indies, Jan. 18 for books published in the previous year, $99
  3. CONNECTICUT (award newly revived): Connecticut Book Awards: January
  4. Independent Publisher Book Awards, Feb. 25 for previous year’s book, $95
  5. Devil’s Kitchen: February for previous year’s book, $20
  6. Housatonic Book Awards:  March 15-Jun 15 for previous two years’ books, $25
  7. Anisfield-Wolf Book Awards for works that contribute to understanding of racism and appreciate for cultural diversity. Deadline Dec. 31 for the current year’s books. No fee and prize is $10,000!
  8. Lambda Literary Awards: For books with LGBTQ themes, Deadline Dec. 31 for current year’s books.
  9. MIDWEST: Friends of American Writers Chicago Literature Awards: August-December : award for prior year’s books, Deadline Dec. 10
  10. American Book Award by Dec. for the following year’s award, no fee
  11. Great Lakes Colleges Association: first books only, should be nominated by the publisher. July deadline for previous two years’ books.
  12. Nautilus Book Awards: Awards on social justice content, Feb. 10 for previous year’s books.
  13. PEN: There are a ton of awards that are very important with staggered deadlines. For most of these, the publisher has to nominate, so familiarize yourself with the page and mark down the deadlines, then ask your publisher. Most come with large cash awards.
  14. Pulitzer: Did you know you can nominate yourself? Who knew?
  15. Book awards you can’t enter: National Book Critic’s Circle Award, National Book Award
Other good lists of book awards include Wikipedia‘s page. Poets and Writers’ database is also good, but as far as I can see you can’t sort by post-publication book awards, so when I am not on top of reading these listings in the various magazines I miss stuff.
Rings of Saturn with colors enhanced to show their differences; bands of blue, then red, then greenish, then tan. Thank you, NASA.

Letter to Myself, as a Depressed Person in These Times

Dear Sonya,
I wanted to remind you that given the state of the nation and government, it’s totally normal to be super-depressed. The daily assaults on reason, fact, morality, and the future itself all seem to require a candle lit in the house of mourning. And you—while making your calls and going to rallies—have lit quite a few of those candles.
I mean, really, how could you not? You are technically a clinically depressed person—which always shocks those who see you as super-happy. They don’t see that happiness and joy-seeking can be athletically honed and deployed in a systematic way over years and decades until the act of enthusiasm itself—especially in public—is like an outer ear, stretched to collect and amplify joy.
So you have your public enthusiasm, which exists around you like the rings of Saturn, as much to keep people away and keep yourself hidden as anything else. You have your meds (glory be). And you’d upped them even before the election. You already know all the things: exercise, going to meetings and rallies and seeing people, taking breaks. I am not telling you anything you don’t already know. So ignore that.
Rings of Saturn with colors enhanced to show their differences; bands of blue, then red, then greenish, then tan. Thank you, NASA.
Rings of Saturn with colors enhanced to show their differences; bands of blue, then red, then greenish, then tan. Thank you, NASA.

What I want to say is that every few days, you dip into bleakness. And while the bleakness has taken various forms throughout your life, I want to applaud your ability to function. First, you have remained stunningly functional, still making lists and getting things done. We have to air out your vices in order to examine them, too. We need to be honest about your penchant, this time around, for stockpiling in small but noticeable amounts, items you think might be necessary after a societal collapse: canned goods (but not enough to actually keep a family alive for an extended period); the crank-operated radio and cell-phone charger (good, but you’re assuming there would still be a signal); cash (and as your husband wisely noted, $200 will not get you far). These are nods in the right direction and also candles of mourning.

You have noted that these actions, as ridiculous as they are, improve your mood and overall functioning, so you do them for that very reason if nothing else. And that itself is wise. Keep making gestures toward an apocalypse you would probably not be very comfortable in because the meds would also run out. And then.
Let’s draw back from the apocalypse, even though it’s there in your mind’s eye. The other object in your house of mourning is shame over the sadness itself and a sense that if you admit it—not your general depression but the monolithic orange obelisk of this specific mourning—you would be draining the movement of energy it needs to continue. You are putting yourself in a 1960s-era Maoist self-criticism circle of one, decrying your lack of revolutionary commitment because you sometimes get sad. And that, my dear, is the wrong view.
Occasionally like a bottle cap on the ground you run into your own sense, which glints in the light of the candles of mourning. Your sense says: you have to feel the feelings, and then behind the feeling is in the intelligence and the insight. You can’t go around them.
And if you go into the pockets of dread, you see how familiar they are. In fact you laugh because the furniture is all the same furniture you remember, and you remember hanging those curtains. What is scary about the dread is that it brings up the dread-eras of your life. Yes, this little pocket of dread still has your old mix-tapes in a shoe-box near the tape player. Yes, it has your journals in it, and it has wisps of your long hair the last time you grew it as a curtain to hide behind. The apartment of dread smells like cold, but it’s the cold you know, almost metallic, and you know where the thermostat is, and you are comforted by the baseboard heaters as they tick and work.
What you find in the apartment of dread with all of your old selves is that the decades you’ve been alive, with the ear of enthusiasm and the conscious construction of days, have build a sturdier sub-floor while you’ve been away. You don’t even feel like crying much in this apartment. You’re scared to be back here, but then is not now.
What’s more—and pay attention to this—is that you know very well how to operate in this apartment, from this home base. It’s nothing surprising. You can very quickly shove a few new books onto the shelves and set up a command center. You can send out an email—yes, email exists now, though the apartment of dread pre-dates it—that says, oops, I’ll be a few days late with this reply.
In fact, you can demand that everyone give everyone else a few days’ more leeway with things. Where was that report for work? I must have left it in my dread apartment. We must all be a little more forgiving now.
Your work—and it is good work indeed—is to know that you function well in this universe. And functioning well can sometimes look like crying, and it can sometimes look like needing a night to recover. And it can sometimes look like foggy-head-What?, but you know this place.
Being sad is not a mark of radical insufficiency.
Being sad won’t bring other people down.
Being sad is one rational response to our situation.
Being sad needs to take the space it needs or it will take all the space.
Being sad is the work we need to do to get to the other work.
Around the sad is only the cold dark of space. There, behind the sad, is the next good idea.
Love,
Sonya
A collection of nine stickers of the cover of Pain Woman in three rows of three on a table. The cover itself is a series of colorful triangles reaching toward the center on a red background.

Reaching other Pain People

The happy thing for me this month is that I am celebrating the release of my essay collection, Pain Woman Takes Your Keys and Other Essays from a Nervous System. University of Nebraska Press continues to be a fantastic home for books, and I’m so glad to get to work with them. And I am glad to get these essays out into the world because they are so strange, and departing from a larger coherent narrative nonfiction structure is such a welcome respite–especially on the topic of pain.

A collection of nine stickers of the cover of Pain Woman in three rows of three on a table. The cover itself is a series of colorful triangles reaching toward the center on a red background.
A collection of nine stickers of the cover of Pain Woman in three rows of three on a table. The cover itself is a series of colorful triangles reaching toward the center on a red background.

I gave a talk last week at the Association of Writers & Writing Programs conference on the reasons why writing about pain made me run screaming from a linear narrative. I have told the story of my onset and symptoms of rheumatoid disease and other conditions to so many doctors, and it’s a mystery story that doesn’t have a convenient resolution. The narrative gives me no answers. It tells of my ability to adapt, to contain pain, but that is not what doctors want to hear. I once went into doctors’ offices furiously and desperately hoping for a cure, but I have slowly adapted to the idea that that is not in the cards for me. I have become a non-narrative, non-linear creature when it comes to pain. For that reason, I have let in all the weirdness, which was fantastic and fun.

Sonya smiling, wearing red glasses, next to Tayler Lord, awesome Nebraska Press publicist, with books in the booth and a banner visible in the background.
Sonya smiling, wearing red glasses, next to Tayler Lord, awesome Nebraska Press publicist, with books in the booth and a banner visible in the background.

Normally with a new book I would do a book tour, and I do have some dates scheduled over the next few months. However, with this topic–and with my body in general the way it is–I am thinking about how to reach people who don’t travel much or for whom getting out of the house in the evening and out to a bookstore is either an ordeal or impossible.

The question is: how can I do a reading for other people like me? Maybe I could do a reading in a mattress store where everyone could lie down. (That probably won’t happen but it sounds amazing). Or maybe–and this I’m considering more seriously–I could do a reading on YouTube live so people could tune in?

One cool thing I am participating in in April is an online workshop on Writing Chronic Pain through the “Survive and Thrive” conference on narrative medicine. I am excited to learn more about this as it seems like an awesome model for accessibility.

Let me know what you think–especially if you are a Pain Person. I am also open to Skype or FaceTime meetings with chronic pain support groups. I know there has to be a way to use technology to connect and do a form of reading that is accessible to people like me.

Sacred Heart, Broken Heart

 

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A screenshot of several different images of Sacred Heart objects and artwork on Pinterest.com

Though I am a Buddhist these days, I suppose nobody gets out of Catholicism easily–or ever. I was raised a Catholic, and I have been obsessed with the image of the Sacred Heart for as long as I can remember. The Sacred Heart is in my mind and heart now every day–it reminds me that I have to go into the world with a broken heart, a heart brimming with too much, and that the living with one’s heart outside one’s chest is life itself.

My grandmother, who emigrated from Germany to Arkansas with her family in the 1920s, brought with her a strong faith. In her house in Subiaco, Arkansas, she stocked up on all kinds of Catholic figurines–St. Christopher riding on the dashboard of her car, tiny metal Madonna and Child peeking from every pocket, saint cards stuck in every birthday card. Disembodied praying hands on top of the television set. A scary rolly-eyed Jesus on the cross seemed to hang in every room, such an agonizing figure that I wanted to take him down and tuck him in somewhere next to my stuffed animals. I suppose that was the point.

But maybe because of the crucified agony, the figure I loved was the Jesus with a Mona Lisa smile, two fingers up, and the Sacred Heart bursting out of his blue robes.This Sacred-Heart Jesus figure was, I think, a larger one in plaster, and he might have been located in the back hall of my grandmother’s house, near the phone. This Jesus was not agonized, even though it seemed someone had started open-heart surgery and then walked away.

Other times the Sacred Heart appeared just by itself, red-orange and full, sometimes surrounded with barbed wire, on prayer cards or amulets. What I loved about the Sacred Heart was first what terrified me about it. At first it seemed super-gross; a freaking organ. I remain staunch in my belief that Catholicism is a little much for imaginative children, for whom someone should offer early explanation of the symbols. But as an adult I have more and more come to love that the heart is not bleeding, not in crisis. It just is. Jesus is just chilling out there with his heart outside his body.

Of course this would resonate with me much more after I had a child, who is now a 13-year-old constantly inventing new ways to smash himself up. The other day I watched him roll down the street on his skateboard and thought, “My heart wears a helmet and knows how to ollie. My heart grinds the curbs and rocks Independent trucks.”

My heart. Of course, it’s outside my body these days, as yours might be. I get up in the morning and the first feeling I have is the heart-catch of diagonal free-fall, the second you realize you are falling down a flight of stairs and it’s too late to grab ahold, yet too early for impact.

The Sacred Heart reminds me, too, of what I have learned in Buddhism as an adult. Dzigar Kongtrul Rinpoche writes in his book It’s Up To You: “In both Western and Tibetan cultures, having a big heart is associated with generosity, kindness, warmth, and compassion. In Tibetan culture, a person with a big heart is also someone with the ability and courage to hold even the most painful truths in his or her heart without becoming despondent. During difficult times, my mother used to say, ‘You need to make your heart big enough to hold a race horse inside.'”

I think this is the hard but necessary thing–now but also all the time: the challenge to not shut down in the face of the awfulness. Although it’s important to take care of ourselves and rest, there’s also courage in witnessing, and in being present. It’s so tempting to cocoon against the awfulness of the world. Hell, I do it all the time, but I then get lonely and isolated and sad.

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My hand holding a medallion from my Grandmother. In the center are two Sacred Hearts, the left with a cross on top and the right pierced by a sword, both wreathed in lilies. Above them is an octagon that seems to be emanating rays like the sun.

Once I would have said that though there were concepts from the world of faith useful for social justice work, there was nothing in faith for me to fill myself back up in the face of severe challenges. But now I am just googling “sacred heart” and looking at an amazing collection of Sacred Heart images on Pinterest, looking and looking at those beauties like fruit that remind me, there is pain, and bearing pain is more than just shutting down and muscling through. There is something in letting pain touch us, being open like that plaster Jesus, like the medallion my grandmother gave me with one heart actually stabbed through with a sword (ouch). And so much like the Sacred Heart, I have a postcard that hangs in my own hallway that says, “Your Heart is a Muscle the Size of A Fist. Keep Loving, Keep Fighting,” a slogan used often in social justice work.

And maybe I get it, Grandmother. (Yeah, I actually called her Grandmother. She was kind of fierce, not the kind you’d snuggle up to with a nickname like Gammie!). I get that sometimes when life feels like daggers, you need images that remind you– deeper than words– that there is a way to bear pain and to feel pain and yet to also remain open, willing to consider the world and to consider hope, like Jesus just chilling with his very red-orange organ on fire and wrapped in barbed wire. He’s not bothered. Or like a Tibetan teacher who has a racehorse inside of his heart.

And that there’s nothing to hold onto. My grandmother’s sacred heart medal is actually disappearing, worn almost flat from contact with her skin so long ago. There’s nothing to hold onto these days in our country, it seems, but I keep remembering that we are not alone, and that so many before us found the need and the images to pull themselves forward with their hearts outside of their chests and on fire.

Paul Ryan’s Soul, Such As It Is

Paul Ryan Says Free School Lunches Give Kids “An Empty Soul.” (Time Magazine)

Paul Ryan, Expert on Living Without a Soul, Says Free School Lunches Give Kids “An Empty Soul”

Paul Ryan Says Free School Lunches Give Kids “An Empty Soul,” Wins Final Round of Dehumanization of Poor People Challenge and Claims 2016 Gingrich Cup

Free School Lunches Give Paul Ryan a Beat-Down

Kids Receiving Free School Lunches Cook Paul Ryan in a Stir-Fry

Paul Ryan’s Soul Commits Suicide and His Body Continues as a Speaker of House Zombie Feeding on Reagan-Era Ketchup Packets

Paul Ryan’s Soul Leaves Paul Ryan’s Body in Protest, Takes Up Residence in Chest Cavity of Turkey Carcass Mostly Stripped by Maggots

Maggots in Vicinity of Paul Ryan’s Soul Depart Turkey Carcass and Run for Congress

Empty Souls’ Union Rejects Paul Ryan’s Membership Bid Due to Member Outrage

Paul Ryan Says Free School Lunches Give Kids “An Empty Soul,” and then Jesus Runs At Paul Ryan Full Speed and Kicks Him in the Chest, Launching Paul Ryan’s Heart Out of the Back of Paul Ryan’s Soulless Chest Cavity

 

 

Sewing Myself Back to the Noir World, with a Peach Pit Under My Tongue

I am trying to knit myself back into a world that is not so much changed as noir. The contrast is way up, a black-and-white movie of the previous life. The villains belong to my childhood, so 1980s with their Cold War mentalities and their penchants for Reaganesque excess and their truly reprehensible hair. In some ways it feels time is sliding backward, and this is not helpful, because so much of my forward motion has been wrapped up in a sense of getting past early difficult days. I am haunted by a sense that time has folded at the apex and will now circle back to the beginning, Protozoan. The caterpillar deciding to fold back into the chrysalis; an abomination.

I think of myself four weeks ago and swiftly turn away, wincing at that hopeful woman who nonetheless feared in the pit of her stomach what has come to pass. At the same time, this brave woman lived in a blue state and yet–importantly, essentially–was afraid to put a Hillary sticker on her car. That means something deep and big, and I will suck the peach pit of that true knowledge until my tongue is raw. Nothing can take away the stone of my understanding or its noir whorls of light and dark. I will not surrender the stone of my understanding to anyone who tries to shame me into believing we deserved this. I will use this new stone to navigate, a pole star. I have gained a hard round thing that fits under my tongue, and any organization I join will have to take this stone and seriously consider it as true, to form its theories around this stone of what my gut knew.

Now, on good days, I am able to complete things on my To-Do list.  On good days I put things that I need to do to take care of my body and basic responsibilities on that list. Today I add “Feed Spogs” (the bearded dragon lizard in my son’s room) and “Walk on the treadmill” because I need exercise to feel better than I do. To regain, for another hour, the sense of sequential time.

Every email that appears in my inbox seems to hang out there from a great distance as if it is performing an act of satire. Let us imagine that your mind is capable of completing tasks without laughing at the absurdity of how working sequentially is just another turn on the hamster wheel.

I have signed a thousand online petitions to stop the pipeline and to hold Congress accountable. I have called my representatives and other people’s representatives in states across the country. I have felt every tiny additional injury–the daily struggles of needing four new tires, the receipt to be submitted for some healthcare thing, the argument at home or the illness–to be massive ice floes. I question my own ability to navigate. I question my own ability to metaphor: look, ice floes–an artifact that may soon be of the past.

I feel the need to offer to myself and others a semblance of the peach stone we have gained, and all I can do is think in colors. I am hanging onto the number of votes for HRC–as a talisman that good people are everywhere. I am hanging onto the sense that the stone under my tongue will tell me where to go.

“Yes, I know, she was not perfect.” This ache–this is what we have to do. We have to bow down in this new world and say this constantly about ourselves. “Yes, I know, we are so flawed.” Noir, eighties, Gunny Sax dresses and big hair and the Brat Pack. My sense of a Midwestern winter that would never end.

I cannot think sequentially, these days. I am using my to-do list as a ladder. I am crying as an errand because it is a way to reconnect to my heart. I am done with being somebody else’s idea of a revolutionary and am willing to discover what my own vision looks like. I am noir, I am edged in dark, I have the peach pit under my tongue, I will not take it from any direction. I have the peach pit now, and I will guard it, and it will tell me where to go.