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.

A Memoirist’s Manifesto

These are scary times–if extreme right-wing semi-fascist rhetoric scares you. It scares me, so I’ve found myself huddling, a little depressed, a little beaten down. I’m not talking about your religion or your political orientation. I’m talking about the extremes that many of my Christian and Republican friends are appalled by.

The language of hate and exclusion creeps into society like a cancer, a fungus. When the solution to a problem is framed in terms of “Who should we get rid of?” the intolerance poisons not just relations between those in control and the targets, but among all people within the community. Trust is universally lowered. Polarizing rhetoric sets an electric charge in the air; who is the next “us” against the next “them”? Everyone gets defensive and edgier. Anyone could be the next target. The chilling effect of threatened repression is what tempts people to draw back into themselves and to seek whatever form of safety they might imagine. I’ve been feeling it.

One important solution to political repression is to tell your story: memoir, memoir, and more memoir. I believe in memoir not just as entertainment but as a solution that reveals how complicated and intertwined our lives all are.

Me, as one example: if you want to kick out the Buddhist democratic-socialist labor activists, be sure to put my name on the list. Seriously. My mama didn’t know her baby would grow up to be an activist memoirist, but she’s survived it. I’ve been in so many activist groups and coalitions that I’ve lost count of all the acronyms. Is that scary? It shouldn’t be. I didn’t plan to be this way; that’s just where I’m drawn–and all that activity is completely allowed in a democracy. Yep, I’m a patriot working hard to make this country better. And I write about it–I write memoir that often involves politics, not to preach but to explore (although I sometimes editorialize).

But I also love a lot of people who are described as hopelessly Trump-loving white rural working-class and lower-middle-class Midwestern, people who like guns and the right to bear arms. Complicated. I love the complexity, and I won’t give any of it up. My mom is an immigrant, as are my dad’s parents. My mom’s dad and grandfather were socialist anti-Nazi activists before World War II. My mom’s parents lived through the Hitler regime in Germany; the threat of fascism isn’t an academic black-and-white photo. It’s been a haunting consuming fog, mulling over this country’s foolish flirtation with extreme ideas as a stand-in for adult problem-solving.

Sometimes I have worried that so much of my political life is online and/or in my writing. I have chiefly worried that my politics would lead to discrimination and block employment opportunities. But my family’s history–and my own study of that history–has made me realize that trying to burrow into safety and anonymity might be a personal privilege, but one that is dangerous to the body politic.

In other words, the act of “memoiring” into family stories has changed my story and my relationship to my past.

If you’re feeling unmoored, I suggest that you read a memoir about this great diverse country. We are anxious about the truth because there is so little to go around; the lack of oxygen is suffocating.

It’s funny that those with little power are excoriated for speaking about their memories—so “domestic,” so “quiet,” so “self-centered” —while massive dehumanizing lies and radical acts of inattention are issued from governing bodies. I don’t think these two threads are disconnected. Some would prefer that we wake up and remember nothing. They would prefer the fantasy that we believe what we are fed.

We are told that writing our own accounts is “selfish.” This the desperate attempt to shame us into silence.

I believe that every single scrap of memory—every smell, every can of soup, every turn of flesh—is a victory against the void and the prefabricated, the false statistics and sound bites filled with hate or oversimplification and erasure.

I believe that remembering is never selfish and that individual experience opens spaces where complex and real political solutions among diverse people can be found. Memoir is not selfish, but massaging the truth and shaping it for profit and corporate gain is the ultimate act of self-centered egomania.

Crafting beauty from a rescued photo is resistance. Individual fondnesses in the face of global threats is the point.

Raising questions, making tenuous connections—these are our work and they are a route to salvage our humanity and reorient our compasses. We have to remember that in our real stories, we are all complicated, and our stories are all entwined together.


On Wanting, Shame, and Artistic Ambition

You didn’t get the grant that would have affirmed your talent and promise. You don’t have a book to hold in your hands that would make all this flailing on the page real. You have been immersed in a deep well of inquiry and making, which is sometimes lonely business, and you want to share it for sense of connection it brings, but it’s not ready yet. Some things are deep underground in these dark days, in the process of becoming. Other things out in the world are wicked and wily. To add to the overall sense of doom, the words you love so much are being flung and twisted for the sake of harm, threat, and injury. The world says no.

I have been thinking about ambition, wanting, and rejection—and shame. And I noticed my brain doing something this morning that I had to talk myself out of, so I thought I would share it in case it’s true for others.

Screen Shot 2015-12-10 at 8.40.51 AMIn the aftermath of a “no,” I thought, “Well, maybe I shouldn’t want so much in terms of my work. Why aren’t I satisfied with what I have? Isn’t that ego?”

Then I caught myself, and I realized that it’s very important to distinguish—and draw a firm line—between artistic ambition and your more garden-variety ego.

There’s been lots of good discussion prompted by the work of VIDA and elsewhere about why women and other disadvantaged groups don’t submit their work as tenaciously as others.

This morning I was wondering what it was about wanting, submitting my work, and then failing to be chosen made me feel a little embarrassed or ashamed. There was a kickback sense of “I can’t believe I even tried—what was I thinking?”

I need to contextualize for myself that I’ve had a good run recently with acceptances for publication, promising things happening—but also I have begun to be more wildly ambitious in my submissions, my writing, and so on. That means hearing more “no.”

Not everyone feels ashamed when they hear the word “no.” Not everyone hears in their own heads, “You don’t even deserve to try.” So I wanted to get to the bottom of this.

Here’s my theory. I have in the past been in an abusive domestic situation that had me walking on eggshells for years. As a result of that, I’ve been conditioned to take any negative signal as a sign of danger, as an early warning of personal antipathy. When we talk about women submitting to journals, one of the things we don’t talk about is what trying and sticking one’s neck out can sometimes bring to some women and other groups who are noticed. Hearing “no” has in some lives meant real physical danger. It has meant, “Don’t you even try to do that again.”

So I just want to affirm for myself that of all the spaces in the world that might reject me, my artistic work is not a site of danger. “No” is just a routine like a red light in traffic. It will shift to green. Now it just means “Not this time, but try again.” It really does, and I know this through my work as an editor.

It’s so easy to take a negative situation and turn it on ourselves, to say “What is it about me that makes this happen to me?”

It’s not about you.

But what I really want to say, and to remind myself of, is that wanting is hard work. Sticking one’s neck out can go against individual and generational prohibitions against risk and visibility. When that wanting doesn’t result in affirmation, it can trigger all kinds of feelings and assumptions, including threads in one’s life that have nothing to do with writing—or that have everything to do with what you are writing about, including your hunger to tell untold stories.

As much as possible I want to praise the hunger and the wanting itself. What your work longs for is to connect with others. That wanting is not ego. It’s artistic ambition, and your art deserves that. It’s natural, because art often seeks communication and communion.

Hearing “no” is not a referendum on the quality of the work you submitted. What’s more—and this is possibly even more important—it’s not a signal to stop wanting.

Your want is awesome. It’s a fire you should feed. Today I’m trying to give credit to that wanting. I’m trying to think about how consistently I have created, submitted, and risked despite the obstacles.

The biggest danger we face—both in terms of our communities and in terms of our artistic lives—is shutting down, taking our fear or shame as a road map, assuming that we have nothing to contribute, and closing off our end of the conversation.

Baking Cakes: A Female Memoirist’s Question-esto

You are a female memoirist.

Screen Shot 2015-06-04 at 1.50.58 PMYou sometimes feel like an unreliable narrator of your own story. You are part of a vast machine of culinary production, and you feel strangely removed from the formulaic confection you have helped make.

The problem is the series of cake pans you have been given, the containers into which you are told you should pour your story. There’s a whole bakery: cupcake tins, Bundt cake pans with ridges, double-cylindrical Angel food cake pans, round pans for a birthday layer cake.

You are assured that if you make a cake—instead of, say, a roasted goat on a skewer—your readers will understand and appreciate the reliable predictable substance, the airy regular texture, the sweetness on the palate.

You undertake this challenge of subtlety. You diligently mix your recipe, sneaking in the hint of saffron, mint, grated lemon zest—the notes you believe that the light cake might bear without collapsing.

You are told to add kisses, and so you do. You are told to add wishes, and so you do. And shopping and love, and moments of weakness, and so you do. And it all sounds like you, after a fashion. And you are told to make the story make sense, and make it evenly shaped and smooth. And you do.

Others get to ice and decorate the cake, to package and deliver it, to shelve it. You hope for the best. You hope someone will take the time to taste the flecks of individuality in your cake.

Commentators who are not inclined to eat cake, who pride themselves on their serious diets, receive it and dismiss it as just another cake. But, you say to yourself, I was told to make a cake.

The terrible problem, you realize, is that you have begun to think of your life as a series of cakes. You personally love cake and buy cake, and you enjoy the cakes that others make, and you know that many bakers were born to make cake. But is your story a cake? You do not know. You do not actually know how long you have thought of your story as a cake, but you suspect it goes all the way back to the first stories. You are not sure you know how to think yourself outside of a cake-shaped container.

Does this make you unreliable? Do you even like cake? You imagine a cake-less universe, and you wonder what else might be consumed.

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Should You Share It With the World?

IMG_5432A friend asked me a great question recently: how do you know when to put a difficult life event out there in the world, either on a blog or as a submission to a publication? She asked wonderful questions about motives: what are we doing when we share the hard stuff?

My first motive in writing is sometimes exploratory and sometimes to vent. When I’m upset about something, I mull in a journal. But I also take notes as a writer. I notice the details that accompany the cataclysms because I know I’ll need those details later for essays. I also record the details because they anchor me to life when my feelings get huge and threaten to blot out the texture and complexity of a day.

I write first drafts from anger, or confusion, or lost-ness, or a desire to make a feeling go away. I think I keep coming back to writing because it does change things emotionally. It undoes new and older knots in my heart through the discipline of reflection. Some people shake their heads at “writing as therapy” as if therapy is a bad thing. I love therapy! Thank you, my legion of therapists! What people mean when they shake their heads at “writing as therapy” is only that they don’t want to read someone’s first or even fifth draft. They want art. You have to keep writing to get to what you can share.

The real emotional benefit of writing doesn’t even come with the first draft. When I am forced to make something art-ish out of this raw material, I have to fit it into a structure that takes a reader into account. I have to create scenes, think about implications, ask myself the hard questions. Trying to make art gives the benefit of perspective—not necessarily a distanced or calm view, because I’m not always calm, nor should that be our ideal, because it’s such a thin slice of the human experience, and sometimes we write with righteous clarity. Writing and drafting provides three or four different perspectives, usually including one where I ask myself what is really really at the heart of the hard question my essay has found itself asking. And that’s the surprise that only an essay delivers, because only the challenge of a decent essay demands that surprise. So it’s not therapy because your therapist (thankfully) doesn’t sit down and say, Make something beautiful.

So my motive in writing something is to explore, to get to a new perspective. My motive in publishing, however, is more complicated. Sometimes I want words on a subject out in the world because I hope they will help someone else. Sometimes I am feeling isolated in my struggle with something and I want to have that sense of connection for myself. Sometimes I know something is “done” or at least as done as it’s going to get. Sometimes I am feeling that a wrong needs to be righted, and that if I put my perspectives out there, those words will do something: expose, heal, reveal.

I have had that experience with publishing my most personal essays. People respond and say thank you, and that feels good—but it always feels strangely removed. I learn that affirmation from strangers is good—it’s amazing. But it’s also raw and makes me feel shaky and exposed.

I’ve shared important chunks of my life in my writing, and I will continue to do so. Some people say this is exhibitionism, and that memoir along with Facebook are somehow responsible for the oversharing nature of our culture. I don’t believe this. I think this shaming about oversharing is an attempt to get people to be quiet about their real messy lives, because honesty about our messiness leads to people getting together around that messiness and leads to social change. Instead, we live in an exhibitionist culture because conspicuous consumption is so, well, conspicuous. This was something that the sociologist Thorsten Veblen was fascinated by. Bragging about your fancy vacations is exhibitionist. Driving an extremely fancy car and making reality shows about your over-the-top lifestyle is exhibitionism. Rush Limbaugh is incredibly over-the-top exhibitionist with his rage. Compared to that, pushing “publish” on your blog to share a hard and honest truth about your life is not a big deal unless your motive is to get attention in order to heal a wound. Attention itself doesn’t heal wounds, and in some cases it creates them.

So I want to turn the conversation about publishing to one of self-care. When you’re deciding whether or not to publish something, ask yourself how the characters involved would react if they read it—not because an AWP panel is going to judge you if you don’t, but because it will hurt you if your relationships suffer. And you’ve probably already suffered enough if you’re contemplating revealing something hard. The conversation about publishing should be also about whether you yourself are safe enough, supported enough, and strong enough to take and process whatever might come at you as the result of sharing something hard. Do you have a good shrink (if you go for that sort of thing)? Have you showed this piece of writing to a few good friends? Are they solidly in your corner?

Let’s get down to the nitty gritty: Have you been sleeping well lately? How have you been eating? I’ve been crappy about both of those things in the last few weeks, personally, so I know I’m under stress. When I’m stressed is not the time to publish something really hard, because putting something personal out there is going to add an additional layer of stress. But maybe—and this is often the case—I’m partially stressed partially because I’m mulling over something that needs to go in a hard essay—so back to the writing, and I know I can publish later.

The question of whether to publish is a gut question. Try to write directly about your motives in the essay: what do I want the reader to get from this? Do I want someone to say that what I went through is shitty? I have found that when I want readers to affirm something I went through, the writing is not ready yet. That’s when I show it to friends, and they tell me that what I went through is shitty. They pound on the table in the coffee shop. Then they tell me that paragraph two is filled with abstractions and bad analogies. They get me to the point where I’m trying to make art—and that is the payoff in and of itself.

Somehow, when my writing buddies push me toward art, I let go for a second of my rage or my sadness. And oh my god, that there is the most delightful feeling in the world. That is half the joy of art, I think—an absorbing task about something awful that ends up with twinges of beauty. This is also why people ride motorcycles: they are dangerous and they demand your complete attention to operate, and it is that undivided dangerous attention that provides a release from your habitual thoughts. So yay for us: a laptop is much cheaper and doesn’t need a parking space.

Part of the beauty in an essay is you: Are you giving yourself enough credit in this piece of writing? Are you at a place where you can see you did the best you could? Being harsh on myself in an essay is a sign that I haven’t mulled the material over enough. Another hard question: Have you found something raw and surprising in the experience, and have you put it in a bubble of perfect language so that the horrible memories themselves are transformed like Christmas ornaments into paragraphs that hang together somewhat at a distance, where maybe they won’t hurt as much anymore?

If that’s the case, press “publish” or “submit.”

Two Eyes Are Never Enough

TwoEyesNeverEnoughMy ebook on direct care workers is now available from SheBooks!

Two Eyes are Never Enough: A minimum-wage memoir
is an ebook that was just released, one in a new series of short ebooks by women, including some writers whose work I follow and love, including Hope Edelman, Susan Ito, Faith Adiele, Marion Winik, and many more forthcoming. Each mini-book is made for any e-reader and at a great price: $2.99.

This piece is the length of a long magazine article, and it explores the world of direct care workers, those who work in nursing homes, residential care centers, and mental health facilities. They are often immigrants, often women of color, usually working for very low pay. I once did that work, which got me interested in the first place. That’s why the piece is called a memoir, though there’s a good chunk of reporting in there too.

How to Support Direct Care Workers

Much of this little e-book is about the physical and emotional labor of caring for others, particularly those in crisis. It’s hard work, sometimes physically dangerous, yet often very low-paying; in fact, home health care workers–one category of direct care workers–are not even covered by minimum wage legislation, which is outrageous. Yet there are many organizations advocating to change this. One huge victory came about late last year, when legislation was passed to cover these workers, which have been left out of wage protection since 1974. This ruling is scheduled to go into effect on Jan. 1, 2015, but there are twists and turns ahead: it was just reported last Saturday in the New York Times editorial page (“No Reason to Delay Fair Wages,” 5/17/14) that a group representing state Medicaid officials is asking for a delay in implementation.

As the editorial states:

“Sixteen states already require that home care workers be covered under state wage and hour laws, so there is a template for how to apply the federal rule. The rule change was researched and analyzed for almost two years before being finalized last September… Any delay would further the exploitation of home care workers–mostly women, minorities and immigrants–who bathe, dress, and feed elderly and disabled clients and assist them with other daily activities. For-profit home care agencies that pay subminimum wages or deny overtime and state Medicaid officers accustomed to balancing their budgets on the backs of underpaid labor will have to get used to paying more.”

If you’re interested in getting active on these issues and adding your voice, consider supporting one of these organizations:

Caring Across Generations: A coalition of nonprofits and unions working for legislation and public attention.

Direct Care Alliance: An advocacy group for direct care workers.

National Domestic Workers Alliance

Thoughts on the Writing Process

This piece of writing has been a labor of love, and a tough nut to crack: I started writing this piece about twenty years ago as I worked in direct care, writing journal entries to help me process my experiences. I published a few articles in small magazines that explicitly called for change in the way that mental health was staffed in these centers. Then, I put it aside.

Thirteen years ago, I tried to approach it from a journalistic perspective and delved into this problem for my major project for a master’s thesis in journalism on this topic at Ohio State University as part of the Kiplinger Fellowship Program. I queried many magazines but couldn’t get interest because the topic seemed depressing and completely “unsexy.” This fundamental unsexiness of women and low-wage work was so hard to write into, because it’s a bedrock blind spot in our society. We take the presence of these workers for granted, so much so that this is the fabric of our society, the one we don’t even comment on. We expect low-wage female workers to care for our bodies and our spirits when we falter and when we die.

Then, during my MFA program, I wrote the story again, from the memoir side, which resulted in an essay that was a finalist for an AWP “Intro” award and was later published in Kaleidoscope: A Journal of Disability Studies.

I pretty much gave up on it until last year, at which time I tipped the balance back and forth between memoir and journalism. The challenge was that I couldn’t find a way to make it “light.” Being less ranty is my cross to bear as a writer, and sometimes I apologize too much for ranting when I should just let it rip with a good old-fashioned harangue. Having done the work and having been a labor activist for a long time, I had lots of commitment to this issue. I wasn’t a journalist who had gone into this as an investigation. I was first a patient, then a worker, then an activist, then a writer. Writing on subjects I care the most about–especially political subjects–has been a challenge when it comes to voice and tone.

The essay is a flexible form, and I believe the essay can contain not only dispassionate observation but also engagement and multiple emotions including anger. But “the essay” is often thought of as a bit distanced, maybe a bit removed, maybe even a bit arty. I love much of that stuff. I write some of it. However, I read many examples of the form that don’t look like the essays I want to write, which is fine. For balance, and for encouragement, I have found it important to read and re-read to examples of engaged essayists like James Baldwin, Jamaica Kincaid, Joy Williams, Rebecca Solnit, George Orwell, and Cherrie Moraga, as well as my recent favorite Kiese Laymon. I like my essays troubled and even sometimes downright mad.

What is an essay? Can it include hot-button, yell-out, pissed-off? Can it have an agenda? Is it marked only by formal experimentation or reflection on a subject whose sting has faded with the passage of time? We shouldn’t confuse the full breadth of possibilities in an essay with a narrowed sense of the role or voice of the average essay. While distance and perspective are important, it is sometimes impossible in a practical sense to step away from one’s vivid emotions. If your topic itself is a large social problem, that topic and its resultant pain will persist over time. Does this mean you should not be an essayist? No–on the contrary, I think. I believe the world needs more essayists and essays that trouble their subjects–not at the surface level of form or fragmentation (though that is fine too, and all respect to those who do that work), but at the deep level of wrestling with a topic, coming away from that topic changed, acknowledging that the topic itself is bigger than the author.

Update: Here’s a blog post I wrote over at the Direct Care Alliance on this book!

Thanks for reading. And check out all the great titles at

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Celebrating Liberation Day on February 15

heartBy an accident of court scheduling, my divorce was finalized on February 15, five years ago. The five-year mark feels like a transition from current events to recent history.

I’m glad that the divorce happened. It was necessary for a lot of reasons, but I wasn’t the victim in that relationship. I got myself into it, I stayed in it, I volunteered every day to stay in it, and in the end I needed to get myself out. While I was in it, I wanted to make it work because I believed in the vows I took, and I believed in commitment itself. I believed that when I started something, I should finish it. I wasn’t a quitter, I told myself.

In the months leading up to the divorce, I felt a mixture of shame, extreme relief, regret, and fear for the future. I was so overwhelmed after going through the ritual in front of the judge that I went back to my office and tried to work but ended up falling asleep on the floor for two hours. I was exhausted. That first Liberation Day was one among many ground zeros.

I have loved being in love. I am in love now, in a good and healthy relationship with a good man. But Valentine’s Day has always seemed to me a little choking, cloying, and too sweet.

Yesterday I had to go into the drugstore to pick up a prescription, which meant running a gauntlet down an aisle brimming with shiny red hearts, red streamers, boxes of chocolates, and stuffed animals. When I’ve been in troubled relationship, I looked to Valentine’s Day for a sentimental gesture, a grand sign to sweep away whatever hurt had been accumulated during the previous year. It took a long time to realize that a good relationship shouldn’t do that only on an annual basis.

I don’t want to destroy Valentine’s Day, because I’m sure many people enjoy it. I will be celebrating the day after V-Day on February 15. I celebrate every person who has decided to be alone for their own well-being. I’m making a holiday that celebrates the way in which ending a relationship can be the beginning of a new life. I’m not sure what the decorations would look like, or what the color scheme might be, but it’s not about dead flowers or screaming fights. I like the idea of it being on my calendar. It’s my Liberation Day, mostly my liberation from my own expectations about what I “should” be doing if I “really loved” someone or how hard I should work on a relationship.