Some anniversaries of loss come, for me, in a kind of anxious restlessness, where I’m churning far above my body, wondering why I feel so disconnected. Others come with the feeling of being pulled into a pit. In many cases, I’m not self-aware enough to really understand what motions my body and psyche are going through until I look at the calendar. The body remembers.
I’ve been feeling an uptick of anxiety lately, and the easiest reason is always to look at the headlines. We have nonsense for a leader. We have people valiantly struggling to maintain some semblance of safety or reliability, and another crew working hard to set on fire or neglect the very bottom of the barrel in terms of the social contract. And North Korea and the EPA and CHIP… you know. You probably know it all and can recite ten additional completely alarming developments in the last 24 hours.
But the body remembers, and it occurred to me recently that we are approaching what was, for many of us last year, a supremely anxious time. Then, on the evening of Nov. 8, anxiety and hope turned to a feeling of “I knew it” or maybe shock mixed with additional possible layers of complete fear. The bottom had dropped out. November sucked, and he wasn’t even president yet.
I did a lot of crying in those days, and a lot of waking up crying. Like, coming to consciousness and finding myself already crying. I’m doing that less these days, and that’s not because I’m used to this as the “New Normal.” It’s because one simply must function, as one does in times of war and protracted national emergency. I’m feeling tides move in and out, tides of despair and overwhelm and then the completely functional instinct to do the next right thing. We are doing this as best we can, and people are doing amazing activist work.
I’m very interested in memorialization, in remembering. In looking at hard things and marking them so that we can integrate them, as hard as they are. I offer this because it has helped. Once I said to myself, “Some bad shit exploded last year at this time,” then I was able to settle down, to see it and say, “Yep. That was some serious floor-falling-out bad shit.” It’s continued to be bad, but that was a rough transition in those weeks.
The body remembers. So here we are. One foot in front of the other.
How will you mark it? How will you see it for yourself, nod to it and say, “I see you. And yet here I am”?
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.
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.
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!
“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.
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.”
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?
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.
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.
Pulitzer: Did you know you can nominate yourself? Who knew?
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.
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.
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.
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.
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.
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.
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.
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, 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