Sometimes You Go To California

On Tuesday night of this week I stood at a podium in front of a class of about 40 students. In my hands I held out a printed copy of the essay I’d recently had published through the Longreads blog about Whitney Dafoe. It wouldn’t be the first time I’d read it out loud. I’d practiced over a dozen times in the previous few weeks. My voice shook, even when I was alone in my apartment, and sometimes my eyes stung and watered.

“This piece is really raw for me right now,” I said. I didn’t say why, and instead started to read. I would have to explain that I’d been at Whitney’s house the day before. That I saw in a book a photo I’d taken in Alaska of him standing on his work truck to take a picture. That over the weekend, I’d seen his mother burst into tears over hearing the lyrics of a song. And through it all had known, once again, that he had no idea I was there. I’m sure I would have lost my composure halfway through.

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Photo courtesy of the Davis-Dafoe family.

Every time I looked up, I saw blank faces, mouths agape, and one student was audibly crying. I felt horrible, but owned my decision to read the essay. I force ME/CFS in people’s faces so that, someday, it won’t be a depressing conversation.

I’d gained a new person to carry constantly in my pocket that weekend. Jamison Hill and I had been friends through email and text for several months, and a large part of my trip to California was the chance to meet him in person.

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Photo courtesy of Jamison Hill

Jamison, for those who are unfamiliar, was featured in my friend Ryan Prior’s Forgotten Plague along with Whitney. Jamison’s the one in the documentary’s trailer who’s laughing, his dimples going deep into his cheeks, his bright blue eyes shining despite being one of the millions missing from ME/CFS. It’s been six years since, right around Thanksgiving, that Jamison went to the gym early in the morning like he always did, and couldn’t finish a workout he normally did thoughtlessly. His story is one of the terrifying ones: he went from being a physical trainer, a model, an amateur body builder, and otherwise active 22-year-old college student to in bed, sick, getting rapidly worse in a matter of years.
Before Jamison submitted a story for me to publish at the Blue Ribbon Foundation’s “Share your Story” section, I’d only heard that he’d become as bad as Whitney. I’d seen GoFundMe fundraisers to help with housing, medical expenses, and treatment. When Ryan spoke of him, his voice grew soft; a tone I’d come to recognize in the ME/CFS community as a person who’d taken a turn for the worse. A person who was living a form of death.

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Jamison later explained that he’d been in a cave for the last 18 months, unable to tolerate daylight, clothing, speaking, or chewing. Coming out of it through saline IV treatments was a rebirth. Even though he had a chance at a new life, he was still unable to sit up in bed. But he could make sounds that people understood. He could eat food. He could communicate with people through email and text.

I knew most of this through reading a lot of what he’d written, but to see it was something else entirely. Ashley, Whitney’s sister, drove me, my daughter Mia, and Janet, Whitney’s mom, to Jamison’s house three hours east. We arrived at sunset, enamored with the view from the porch. Janet was the first one to go in and visit with Jamison. I was the second.

Before going back to his room, I was worried what germs I might have on my clothes. A simple cold virus could knock him down further. I was worried seeing me would cause him to crash. But mainly I was worried that he’d go beyond his limits and wake up the next morning feeling horrible and unable to move.

When I read what Jamison wrote about meeting me in his blog, what stuck out the most was that he’d hoped seeing him, smiling and sitting up would give us, his largest group of visitors in years, a new hope for Whitney.

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But Jamison’s just like that. He’s easily one of the happiest, lovable humans I know. In the months of us emailing and texting back and forth, he’s gone into frustrated rants maybe twice. And a few times I had to specifically ask for them. Seeing him, sitting there, knowing he hadn’t gotten out of bed in almost two years, I was completely in awe of his ability to maintain any semblance of who he’d been six years earlier.

So we smiled at each other. I hugged him a bunch, and held his hand. We made jokes, told a few dating horror stories, and then it was time for me to give him a break.

We texted late into the night. I kept asking him the next day if he felt all right. He said yes, and said he wanted to see us again. So I bought him some tea from his favorite little shop, and some fudge. We drove up to his house at sunset again, and took some pictures on the porch. I went inside to use the bathroom, and snuck across the hall to Jamison’s room.

He had thick blankets on the windows and the lights off. I couldn’t see anything, then saw the faint light of the screen of his phone–his signal to tell me where he was. I saw his shape then. He wasn’t sitting up. He was on his left side, bent over almost in a fetal position, his cheek pressed against the bed. Crashed.

I felt his hand reach out for mine and sank to my knees at the same time. My other arm went around his back, my right cheek on his head. He only had boxers on with a sheet covering his legs and feet.His mom came in to open the curtains all the way so we could see each other. I stayed that way for a bit, whispering that he should have told me he had what ME/CFS patients call “the world’s worst hangover.”

He wanted to know how long we were staying, and where we were going next, and, of course, offered ideas of where to go eat dinner. He couldn’t talk like he did the day before. Most of this I either figured out through pantomime or he had to type out on his phone.

I went in the second time after everyone else had visited to kneel down by his bed to say goodbye. He held my hand tighter, and whispered “I’m so tired of this shit.” I told him I think about him constantly. That I love him. And that I’d miss him dearly. That I’d be back to visit as soon as I could to be there more than just an hour or two. “I’ll spoon you next time,” I said, and he chuckled.

I stood out in the living room, watching Janet hug Jamison’s mom, Kathleen. “We have amazing sons,” Janet said. They were crying. A stark contrast to the night before, when we’d been celebrating recovery. Kathleen went in to check on Jamison and he wanted us all to come back, stand in the hallway, and wave goodbye one more time.

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Mia Land, Stephanie Land, Jamison Hill, Ashley Haugen, and Janet Dafoe

“He just wants to see your faces again,” his mom said. So we stood there, blowing kisses, waving, watching him do it in return from his dark room. The cave. For the next day, as I told him I was on my way to the airport he’d text “Damn. Don’t go.”

From the moment I’d left the hallway of his room I hadn’t wanted to. I didn’t want to drive away from Whitney’s house, watching Janet and Ron wave goodbye. It’s a different sort of grief, to feel too helpless, too far away, and isolated.

After I read the essay the next night, one of the students asked me if I had any advice on writing. I told them what everyone says: to sit in a chair and motherfucking write. But the next day Jamison reminded me of the necessary part that needs to exist before that.

There is only one thing you should do,” Rilke wrote. “Go into yourself. …confess to yourself whether you would have to die if you were forbidden to write. This most of all: ask yourself in the most silent hour of your night: must I write? …if you meet this solemn question with a strong, simple ‘I must,’ then build your life in accordance with this necessity…

Jamison writes everything on his phone. He can’t use a laptop, can’t stand looking at the screen. He wrote the last bit of his book looking at his phone through tanning goggles. That amount of passion, that desire to write words, humbles me. Even though I am finishing this post in the chaos of bedtime with a two-year-old on the floor tearing apart paper and throwing markers, it would take a crazy amount of passion for me to write this out on my phone. I’ve written in journals since I was 10 years old, and I deeply admire Jamison’s amount of “must” to write. To live.

 

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Advocacy in Action: Ryan Prior

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Stephanie and Ryan in Missoula

My friend Ryan takes 20 pills a day to stay well. I heard him tell this to crowds of attentive listeners several times over the weekend. “I give myself one shot a week,” he added, “and get an I.V. treatment once a month.” I watched him take the pills a few times. He carries them around in a large backpack, in one of those containers, separated out by the days of the week. The green one makes him grimace. I don’t ask what they are.

I’d sent Ryan a message on Facebook several months ago after someone who knew him encouraged me to. I’d watched Ryan’s documentary, Forgotten Plagueabout his disease twice in one week. The scenes with my friend Whitney, bent over in his bed, ribs showing, long fingers covering his face, and his scraggly hair emblazoned with a patch of sun, froze the tears in my eyes, planted my hand to my mouth, and made me an activist for myalgic encephalomyelitis, the disease so clearly killing a person I loved.

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Still image from Forgotten Plague

When Ryan visited Jamison for the film, Jamison still lived alone. He could sometimes do the dishes. He laughed. He did a few pushups to show how fast his heartbeat escalated, like he’d just sprinted a mile. When Ryan returned several months later, Jamison sat through the interview. He looked defeated. I wonder sometimes if he knew how bad he’d get. If he thought his trajectory was inability to speak.

I don’t know how many pills Whitney’s prescribed. His dad patiently grinds them in a marble bowl meant for spices, then mixes it with the liquid food they’ll pump into the tube surgically placed in his stomach. I watched his father Ron, a world-renowned scientist, thoughtfully stand at the end of the kitchen island at night, pausing in crushing the pills to look up at nothing. Maybe he thought of a new piece to the puzzle of his son’s disease that he researches full-time to find a cause and cure, or maybe he found the right place to put one.

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Photo courtesy of Jamison Hill

Jamison used to be a body builder. He lost the ability to speak for a year and a half. “He’s almost as bad as Whitney,” people had said, because he also couldn’t chew or sit up in bed. Whitney hasn’t spoken in almost four years. Hasn’t tasted food in at least two. But Jamison came out of it from heavy doses of saline through an I.V., and can tolerate flashes of light and laughing and sitting up. When Jamison first sent me an email to share a story he’d written about it all, I couldn’t help but believe Whitney would someday do the same.

Almost every patient I talk to says these words: When I get better. A form of faith I doubt I could match, and inspires me daily.

The other night Ryan said in front of a group of students, nodding to me, that I was close to Whitney when he could still walk and talk. I’d never thought of it that way. I don’t want this part of his life to be “after.” I hope for it to be the middle. Whitney didn’t just walk and talk. He danced. He climbed to places he wasn’t allowed. He stood, thoughtfully, just like his father, seeing the world framed in a photographic lens.

None of the patients I know think they’ll ever be as bad as Whitney, and I’m not sure Whitney knows he’s the worst. He must know it’s bad, especially on Monday—the day I flew to D.C. to protest—when they had to rush him to the hospital to repair a hole in the tube that gives him food. I know he feels alone in the prison his body has trapped him in. I know this because his mom tells me he cries all the time and she can’t comfort him by touch or word, but only by placing her hand on her heart before leaving him be. img_1413I walked around the United States capitol with Ryan for a few hours before the protest. It was hotter than I thought it’d be, and sweat dripped down my back into the waistband of my jeans. Ryan had changed into a dark shirt before we left, and he fought to keep the sleeves rolled above his elbows. I kept looking for signs he’d had enough. But ever the tour guide, he showed me the town he loved, walking me to the Library of Congress, and through the stuffy viewing platform. We paused to buy food and sat to eat it on a shady bench. We walked down past the Smithsonian, the Washington Memorial, gazed at the Whitehouse from outside the fence with the cops behind us yelling at tourists to behave. We stopped for souvenirs before sitting on the cool floor in the corner of the Lincoln Memorial. I remembered how the statue had been like a giant when I saw him at seven. How I’d looked up so far the back of my head touched my shoulders a little. Now I understood the weight of the words behind him.

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Ryan speaking to a group of visiting interns from the University of Georgia in Washington, D.C.

Ryan spoke a bit at the protest for his disease not even an hour later. I wondered how many times he’d done that. “I’ve lived in five states this month,” he said to a group of students a few hours later. His advocacy work had brought him to Chicago, Palo Alto, my town of Missoula, and Washington, D.C., where we held informational signs about those who suffer from the disease. Hashtagged MillionsMissing, the protest took place across 24 cities on four different continents that day.

I insisted on buying Ryan a fancy dinner after his final talk—the third in two days—and we walked through the dark streets of upscale neighborhoods to an oyster bar. Ryan went from gleefully tasting oysters from different coasts, ordering beer and a porterhouse, to excusing himself quickly. He returned to the table rubbing his eyes and couldn’t finish his meal. Within a few minutes, I’d paid the bill and gotten a car to take us home.

He said at least he’d probably sleep well that night. I wondered if he really would. I wondered if he was okay. Earlier that night, on the way to dinner, I’d told him I hadn’t thought he’d be able to do so much. I guess I wasn’t sure what to expect. Everyone who has the disease is affected differently, but most aren’t able to leave the house or even bed very much. Many hide their disability, spending the weekends recovering, not able to muster up the energy to shower.

Ryan calls himself one of the 10-15% of those who have recovered, as long as he takes those 20 pills a day. As long as he knows when to leave the restaurant and go straight home, and does.

Jamison and I texted later that night, after I dropped Ryan off. I tend to send him a photo of my glass whenever it has Jameson whiskey in it. I wrote for a little while at a bar before deciding I wasn’t writing anything. I couldn’t fall asleep; woke up groggy, dehydrated, and a little hungover. I figured Ryan probably felt the same without the aid of vices or lack of water or sleep. He sent a text and said he felt energized from getting out and walking, and I wondered if he said that so I wouldn’t worry. He swore he didn’t, but I knew if I were him I would have lied to me.

He sent me a few happy texts throughout the day, like Jamison always does. Sometimes late at night I send Whitney’s mom a text with a simple, red heart. Code. For love for each other we cannot explain. And the fiercest love for Whitney we hope he can feel.

For more information on myalgic encephalomyelitis, and to donate to fund research for treatment, go HERE

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Announcing, my forthcoming memoir: MAID: A Single Mother’s Journey from Cleaning House to Finding Home

Announcing, my forthcoming memoir: MAID: A Single Mother’s Journey from Cleaning House to Finding Home

On June 16th, I celebrated my youngest daughter Coraline’s second birthday. While she opened presents, I relished the memory of her entering my life. She was born a month after I’d graduated college, during a time when I was totally unsure of how I’d find enough work or how to make it as a freelancer. This year, as I watched her eat cupcakes, I felt our journey intensely—how far we’d come since the beginning— in part because that afternoon, I’d accepted an offer with a publishing company, Hachette Books, for my book.

announcementExactly 11 months after my essay about cleaning houses was published on Vox and went viral, I accepted the offer for my memoir—an expansion of that essay. For months, I’d spent what I felt were luxurious hours not writing for pay, but working, quietly at night, with a sleeping baby in my lap, crafting the perfect book proposal with my agent, Jeff Kleinman at Folio. It felt incredibly strange to be going after something I’d wanted since I was ten years old, and at first, I didn’t have much faith in it. For over twenty years, I had been writing, reading, and studying the art of writing. It was shocking to even have an agent.

Three years ago, I shared an essay with one of my writing instructors, Debra Earling, who now heads the creative writing program at the University of Montana. It was a piece called “Confessions of the Housekeeper,” which I’d written in a workshop the semester before. Debra and I met one afternoon at a coffee shop to discuss writing and my application for the MFA program. I timidly handed her the pages from across the table and got up to order coffee. When I returned, she was sitting in the exact same position, but with her hand clasped over her mouth.

“This,” she said, looking up at me. “Stephanie, this is going to be a book.” She went on to describe, in detail, my book tour, and my success, and even my finding love. It rolled out of her, like a fortune. On my walk home, I remember skipping a little. Someone believed in me and in my story.

Fullscreen capture 7162015 24823 PM.bmpI would work on that essay for the next two years, chiseling away at it little by little. When Vox bought it for $500, I about fell over. It seemed a massive amount of money, especially since I had spent the last eight years on assistance programs, and my current hourly wages from various freelancing jobs were about $10.00. I thought it would surely be the most I’d ever receive for my writing. When the essay went viral, with almost 500,000 hits in the span of three days, my career took off. Within two months, accepted a position as a writing fellow with the Center for Community Change, and had several more pieces published, including one through Barbara Ehrenreich’s Economic Hardship Reporting Project.

In May, just before sending out the finished book proposal, I was finalizing a new essay with an editor at the EHRP, which would go on to be published in the print edition of the New York Times. I also sent her my book proposal–all 70-some pages of it–and asked if she might be able to show it to Barbara. Maybe Barbara could possibly read it, or even write a few sentences about it?

Two days later, she emailed back with sentences in quotes from Barbara, my journalist hero, a woman I have long admired:

“We need more books like MAID, with the view from the fridge and under the couch. Stephanie Land has something to teach us about both sides of the inequality divide. Neither is what you are expecting.”

barbaraquoteWith that, MAID became real. My book, my memoir, was finally happening. Not even a week later, I accepted an offer from Hachette Books to bring my story out into the world.

I spent four days talking to editors, publicists, presidents, vice presidents, marketing teams, and senior editors from publishing houses all over the country about myself and my book. I felt so small, just some girl in Missoula, Montana. I paced around my living room, headphones in, gesturing wildly. It seemed unbelievable that I was talking to the very publishers who had been responsible for bringing my favorite writers’ words into the world.

The sleepy Thursday afternoon of Coraline’s birthday was the first day since the publishing conferences had begun that I didn’t have any scheduled calls. The only call came from my agent, asking me what I thought about an offer by Hachette Books. Because four or five publishing houses were about to make a bid, they had made a preemptive offer to take my book off the table, in order to keep it from going to auction.

Hachette had been my last call the day before, and it wasn’t like the others. I talked to a group of four people, and all said they’d reacted to my story differently. Krishan Trotman, who would  become my editor, is also a single mother, and we gave each other a verbal fist-bump. I could tell by her voice that she felt a passion for the message I wanted to share.

During the meeting, I felt comfortable enough to be vulnerable. When they asked me what scared me most about writing this book, I answered honestly and easily. I closed my eyes, breathed in, and told them my fears of not writing the story as it played out in my head. Of not getting it perfect enough. Of jumping into something so huge when I was so small.

When Jeff called the next day to ask if I wanted to accept their (amazing, incredible, beyond my wildest dreams, life-changing) offer, I held my breath.. Alone in my tiny apartment, I said yes.  And then went out to buy cupcakes for Coraline’s birthday.

IMG_9341A couple of weeks after I accepted the offer, Krishan and I spoke again on the phone. “I just have to tell you,” she said. “Our office, our floor, is all open. When we received the news that you’d accepted our offer, everyone jumped up from their desks to cheer, and started hugging each other. Even the CEO of the company came out to give me a hug. I’ve never seen anything like that in publishing before. It was amazing.”

When I told this story to my best friend over a celebration dinner a few days later, she got tears in her eyes. While I’ve told this story several times to friends throughout the last couple of months, I haven’t been able to formally announce it through my platforms. There was a part of it that didn’t feel real unless I talked about it. This summer has been a hibernation of sorts, an internal resting and journeying, knowing that I was going to begin full-time work on the book in the fall. I slowed down with work, and stopped hustling to pitch and publish articles. I gave myself time to mentally freak out. I made some feeble attempts at planning the next two or three years, all the while knowing that I had no way to even imagine it.

While in this limbo period of time, waiting for the publishing agreement to be negotiated, I have worked less, which has meant less income. For most of the summer, the cupboards have been almost bare. Now, I’ll still have to budget, plan, and live the same life we are, but I can buy the groceries I want without feeling anxiety building in my chest as I watch the total increase at the register. I can get the axles fixed on my truck. Hell, I can get a real stereo for my truck. I won’t have to stare at this little piece of paper next to my desk, detailing which bills are due on what date, and for how much, figuring out who I can pay and when, and who I can skip.

I’ve been sitting on this news for so many long days. Publishing this post and sharing it with all of you is what finally makes it real. So I celebrate today with all of you, my friends, and followers, who have stuck with me through all of these years. Thank you for your support. Thank you for reading. I can’t wait to share my book with you. I can’t wait to change the stigma and narrative of single mothers in poverty. I can’t wait to raise my voice for the domestic workers who aren’t paid enough to make ends meet. I can’t wait to bring attention to how the system of government assistance fails millions. And I can’t wait to share my own journey, the moments of heartache and beauty, the bone-numbing exhaustion, the deep love I carry for my daughters, and the pride I feel for having gotten where we are today. With all my heart, thank you for being someone I can share my story with. Thank you for being someone I can depend on to read it. That support will carry me through the next year of this new journey, and writing this book, tentatively titled:

MAID: A single mother’s journey from cleaning house to finding home.

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10 Days to DC

Yesterday was ME Awareness Day. That stands for Myalgic Encephalomyelitis, otherwise known as chronic fatigue syndrome. My recent article about ME/CFS went live on SheKnows today, and I’ve spent the morning glancing at the clock, counting down the minutes until it went up. I’ve been freelancing for a year, and I haven’t done this act of anxious anticipation in a long time.

Because this is my friend Whitney:

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Photo courtesy of the Davis-Dafoe family. 

That tube coming from his stomach is how he eats. Up until recently, he could only tolerate getting nutrients through an IV. The tube in his stomach is an improvement.

Those headphones are on his ears because he risks completely shutting down at the sound of speech–even his own mother’s voice.

My article quoted a friend of mine, Justin Reilly:

“A brilliant physician I knew was one of the top public health officials on the AIDS crisis at its height,” says Justin Reilly, who has both Lyme disease and ME. “He said to me: ‘The CDC did the same thing to the AIDS patients as they are doing to you: They put their absolute worst people on it and ignored it as long as possible. But then people started dying grisly deaths in big numbers, and it wasn’t feasible to ignore it anymore. Unfortunately for you, your death will not be as grisly or swift.’”

Whitney has been bed-ridden for almost three and a half years. He hasn’t been able to speak in the same amount of time. He hasn’t experienced any major improvements since the Fall of 2014, the last time I heard from him.

In 10 days I’ll get on a plane to fly a red-eye to Washington, D.C. I’ll finally meet my friend Ryan Prior in person, who wrote and co-directed Forgotten Plague, and Travis Preston, who edited it. For the last month, I’ve been directly involved in the goings-on of the Blue Ribbon Foundation, the non-profit that backed Ryan’s documentary. Saying I’m excited doesn’t even touch my feelings over the opportunity to attend a screening of Forgotten Plague, especially one where Ryan’s in attendance and able to answer questions afterwards.

The next morning, the three of us will head to D.C.’s Department of Human and Health Services, where we will participate in the protest that is also launching the #MillionsMissing campaign.

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From the protest PR Committee:

On May 25, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services to implement the following list of demands.

Our goal is to give the 1 to 2.5 million i disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.

For ME/CFS patients and their families, we demand:

1. Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

2. Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

3. Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

4. A Serious Commitment

HHS leadership, oversight and a serious commitment to urgently address ME/CFS

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Photo courtesy of the Davis-Dafoe family. 

Whitney has been in my heart a lot this week. The task of raising awareness and funds to properly research his disease seems insurmountable. Knowing how many people suffer in silence, multiplied by the number of people who are suffering without a diagnosis, isolated, alone, and without any support, is a deep pool of heartache that I actively fight to not fall into.

Because of that, it’s easy to get overwhelmed. I spent today pitching editors (and even emailing back and forth with a couple who had suggestions!) articles about Whitney and ME/CFS, but for the last week I had to pull back from the volunteer work I do. I knew if I kept going at the rate I was, by the time the protest came, I’d be too run-down to bring add any energy to the events.

But here we are, on to the final countdown. 10 Days to DC.

I’ll see y’all there.

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Taking Strategic Withdrawals

IMG_0237Mornings have been different lately. We all get up together, and if Cora is extra grumpy, Mia and I switch duties. While I am outside, waiting for the dog to sniff out a good spot to pee and poop, Mia is inside, getting Coraline out of her rumpled, just-slept-in-pajamas, changes her diaper, and puts her in an extra-cute outfit for daycare. I hear them laughing and singing as I walk back inside, a sharp contrast to mornings when Mia was in Kindergarten, when we’d scream at each other in our fight to get out the door.

As a single mom, when you’re in the thick of things, you never see it getting any better. You can’t tap out to take a break, a breath, and do whatever mantras you need to get you through hard times. You have no way out. You just have to grit, duck your head, and push through. So when these sweet moments happen, a type of presence is required to soak it in, in the hopes that the memory will surface when the next tornado of chaos tries to sweep you away.

This morning’s sweetness wasn’t an “I have made it” moment as a mom. Last night, I was in tears over not being able to find a sitter to go to a reading by one of my favorite, and most influential, authors, David James Duncan. I saw him read almost exactly ten years ago at a church in Seattle. There, he mentioned he lived near Missoula, Montana, and that is how we ended up here.

I’m not sure what an “I have made it” moment would be in my field. I’m a writer. I support myself by writing. Living the dream, right? Sure. This month. I have a hard time believing that this life will sustain itself long enough for me to call it a career. I know it could if I wanted it to. If I wanted to continue fighting daily, weekly, monthly, to carve out ways to get paid.

Last week, last Monday, I was on the front page of our local, state-wide, daily newspaper. Even Mia commented that it means I’ve now “made it.” I’m a pro, as she said.

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Being on the front page of the paper made things a little odd for me as a writer, and as someone who had a fresh “Tinder” account. There was no longer an intrigue of “Hm, I wonder what this lady’s all about?” Even going to the grocery store, I avoided eye contact with strangers looking at me, trying to place where they’d seen me lately.

Then I had a spot on a national TV show.

The producers for the show “The Doctors” had reached out to me, but Coraline wasn’t in daycare full-time yet when they recorded the segment. I’d scheduled a sitter, then they pushed it back a week, I canceled the sitter, then they called about five minutes before they were going to record the segment and by the time I’d sloughed Cora off to my incredibly understanding neighbor, they’d already talked about my article and it was over.

Which was fine. I wasn’t sure I wanted to talk about it, in fear I’d be met with criticism. The article, on that day, had been warped on a tabloid in the UK. It was about to go very, very viral worldwide. For the next week, I’d have reporters emailing and messaging me to the extent that I’d shut down the ability to send me messages through my public Facebook page.

IMG_0256For the next couple of weeks, Coraline started daycare full-time, and I worked a staggering amount. In the week I had the reporter and photographer from the newspaper come interview me, I wrote about 11,000 words. I didn’t think of this as “writing.” This was producing.

Producing from a place of raw skin from a controversial article going viral. This was different from imposter syndrome. This was writing with the knowledge that every word I submitted could be rearranged to appear not anywhere close to the meaning I had intended.

Maybe it’s a “with great power comes great responsibility” moment. Suddenly, everything I wrote had weight. A heaviness. Maybe it was imagined, and the only reason I thought people gave a shit about what I wrote was because for a few days they cared a ton. I don’t really know. I write from a small apartment that faces north. It’s dark and cold. By the time I get through my morning rush of writing, reading, answering emails, pitching, and finding interview subjects, I stumble outside, in two or three layers, to find it’s 70 degrees, sunny, and a beautiful day.

*

I hid most of last week. Then I went to a reading on campus, and saw many of my old professors. I talked shop with them about agents and publishing. The heads of the English department shook my hand, hugged me, and congratulated me. John D’Agata raised his eyebrows at me telling him I supported my family by writing. I’d studied his books in school and he signed the one I’d just purchased “From whom we expect great things.”

IMG_0239

Once, being addicted to the rush of freelancing pushed me forward. Now I’m just being pushed.

*

Through all of this, I’ve been single, and a single mother at that. I do not get time off. Almost every moment I have away from my children is spent worrying over how I will afford to pay my bills, which have recently doubled with the addition of daycare and the loss of government assistance.

But when good things happen, when the really really good things present themselves, I don’t have anyone to turn to and point at it and say, “Hey, come’re. Would you take a look at this shit? Isn’t this crazy? I mean, this is some fuckin’ rad stuff happening right here!” and they’d say, “Whoa! That is crazy awesome! Congratulations!” and then we’d hug or something and maybe go celebrate with ice cream and smile and I don’t even know what that would look like in real life. Because my real life is diapers, and tantrums, and caring for two children to the point where, after a weekend with them, I am completely hollowed, and crying over not being able to go see my favorite author read.

So last night, we were all sitting on the couch, snuggled together in a heap of hugs and “nigh-nights” and kisses and the dog trying to get in on it all. I asked Mia to get down a book of essays by David James Duncan. She had to get a stool. He’s on my top shelf. I read the essay he’d signed for me at that reading in Seattle a decade ago called “Strategic Withdrawal.”

            Strategic withdrawal: this prayer: When I’m lost, God help me get more lost. Help me lose me so completely that nothing remains but the primordial peace and originality that keep creating and sustaining this blood-, tear- and love-worthy world that’s never lost for an instant save by an insufficiently lost me

            “We’re all in the gutter,” said Oscar Wilde in the throes of just such a withdrawal, “but some of us are looking at the stars”

            strategic withdrawal:

            look at the stars

 

And look at the stars we shall.

 

-step.

On Working

“No, I don’t like work. I had rather laze about and think of all the fine things that can be done. I don’t like work – no man does – but I like what is in the work, – the chance to find yourself. Your own reality – for yourself, not for others – what no other man can ever know. They can only see the mere show, and never can tell what it really means.”
― Joseph Conrad, Heart of Darkness

I’ve been thinking a lot lately about the work that I do. For a long time, I never felt like I did enough. I thought “work” didn’t count unless I logged in specific hours for pay. I didn’t think domestic work counted. I didn’t think doing dishes, laundry, shopping for and preparing food to feed my children (and myself, for that matter) and even playing with my kids counted as work.

The last few days especially have been a fog of fatigue, of exhaustion that causes my eyes to close if I sit down for too long. On days I have my children home with me from when I wake up to when I finally tell myself to go to sleep, I spend every waking minute caring for the two other people (and furry beast) in my home. I eat, hunched over the kitchen counter, in between gulping down coffee or sometimes water and in the evening a blessed glass of wine or beer. I often do not shower. It’s a constant, grueling mess of two children tugging at my legs or mind or emotions.

In between all of this, I fight to work at my job. I email editors pitches in between flipping pancakes. I keep up on the social media side of being a published writer. I field phone calls and texts and emails about different groups and organizations I’m involved in. I have conference calls while the toddler takes things out of the fridge and spills it all over the floor, much to the delight of the dog. I struggle to put pants on her kicking legs, and sometimes start screaming and flailing myself before walking into my bedroom, embarrassed and angry, heart pounding, and wanting to sob.

IMG_0174There is beauty, of course. There are moments of laughter and joy. There are friends who check in, who come over to talk, who invite one or both of my children over to play.

But I can’t get away from this overwhelming desire, a primal need to just sit down and write. I’m caught up in freelancing to the point where I could probably write all of my waking hours and still not feel like I’m caught up.

This does not coincide with the work I do at home at all. It is not a gentle give and take. It is an inner battle of fighting to love what I hold most dear.

I love writing. I love that I’ve chiseled out a career where I am a writer by trade who is paid well for it. It’s living a dream. Being a mother, well, I can’t say that has been something I’ve dreamed of being since I was in elementary school. Writing was my first love. It is how I identify myself. It is what I will do until I can’t any longer.

IMG_0168Being a mother is also something I do very well, but I can’t say it’s my passion. I don’t enjoy playing, or going to parks or story time at the library. Although I am a good mother, it’s not because I mother my children directly all the time. I outsource my mothering duties. As a single mother especially, there’d be no way I could possibly be everything to my children all the time. I’d have nothing left of me. I’d have no career. My life requires a rotating, constant set of characters that step in to replace me for a time, or I would surely dissolve.

Coraline starts daycare full-time next week. Up until this point, it’s been a hodgepodge conglomeration of a couple of daycare days, a babysitter, family, and friends who all pitch in to give me precious hours to work. I started freelancing in earnest a year ago, and have finally reached the point where I easily log in 50-60 hours a week of writing, researching, interviewing, or keeping up on administrative duties. Then I wash, I cook, and I love on my kids until I am falling asleep sitting up on the couch. Having a full 40 hours a week to focus on work, whether it’s direct or domestic, will be huge for me. I hope to shower, and maybe get back into climbing and hiking. I hope to start cooking again, instead of dragging myself to the store and picking up whatever is easiest.

IMG_0166I always return to that quote by Joseph Conrad. He focused on the rivets, saying it was the little things that made all the difference. An article published on a platform I’ve pined for, being fully present while my toddler goes down a slide, laughing with a friend: they’re the little moments that keep the ship together, and chugging up the river.

I’ve worked two or three jobs for most of my adult life. I am a person who enjoys working, and gets a little nutty if I have too much downtime. Judging from my family history, it’s in my genes. But in these days of feeling so entirely wiped out, I start to wonder if I’ve pushed myself too far, while still getting caught up in the rush that is pitching and getting published. It’s necessary to celebrate the rivets. They keep us together. They keep us moving forward. They are so small, yet vital. They are what holds our life together.

 

-step.

Therein Lies your Calling

I used to devour books. Steinbeck had a line in East of Eden about a boy who read books so completely that he’d finish it, only to look up and have book all over his face. I’d read books with an open notebook, pen in hand, to scribble lines and quotations and sayings and thoughts. I read books like texts, whether it was fiction, autobiographical, memoir, or poems. I looked for beauty in words.

Lately, or for the last couple of years since graduating college, I haven’t picked up many books at all. I’ve purchased them. I’ve hoped to get to them someday. But the act of sitting to read a book is difficult because 1) I start to doze off almost immediately and 2) it’s entirely too selfish of an act–I might as well be in a bubble bath with a glass of wine.

I do read all the time, however, in researching topics I write about. Today, in doing that, I found this quote:

“Where the world’s greatest need and your greatest skill meet, therein lies your calling.” 

It’s from Aristotle, quoted in an article by Ryan Prior, who wrote, produced, and directed the documentaryForgotten Plague.”

I read this article written by Ryan because for the last couple of months, the story surrounding a forgotten population of people suffering from an unimaginably terrible disease has been my passion project. I haven’t been able to place any pieces I’ve written on it, though I have tried desperately. I’ve spent a lot of nights, staring at pitches I’ve refined, listening to a song on repeat, wondering how I can convince a publication that my story deserves space on their platform. I do this because an old friend of mine, Whitney Dafoe, is so sick from this horrible disease, unfortunately named Chronic Fatigue Syndrome, he’s been bed-ridden and unable to speak for over three years. 

Ryan calls it the most under-reported medical story. An estimated two million people suffer from myalgic encephalomyelitis, or ME/CFS, or anything but calling it “chronic fatigue,” which, as Ryan puts it, is a diagnosis that feels insulting when your entire life has been stolen from you.

I write about this here because a couple of months ago, when I learned my friend was so ill he hadn’t been able to communicate, eat, or move much more than sitting up in bed for a couple of years, I thought, as a writer who’d published stories and had connections with so many editors, that I’d have no problem raising awareness of his condition. I got excited over my ability to give a voice to a population who no longer had one. It was the truest of essence in my calling in life. All writers wish to change the world. To make a difference.

A dozen pitches later, I feel like I’m failing. I’m failing not only Whitney, but his parents who care for him night and day.

Yet, every day I still fight. I make connections whenever I can. I form friendships with people who are patients, and spend their days fighting for the energy to move from one room to the next. One said, “You will actually be healing people just by letting them know you know it’s a serious illness. We’ve been misunderstood and mistreated and you want to tell the truth, get accurate info to the public, to help the public understand. I mean that, you really will be healing people.”

The general population, the medical profession, and often the patients and their families themselves, don’t understand this disease. There is no understanding of what causes it, or how it can be treated. There’s no funding to study it. There’s no insurance to cover people who seek treatment. For some, the only treatment they are given is by telling them it’s all in their head. They’re told they’re totally fine, western medicine proves it, just look at these tests.

whitney2A somewhat precious thing I’ve discovered, despite the sadness involved, is that I knew Whitney before he got sick. I knew him for a short time, over a decade ago, and remember it so clearly because…I’m not sure why exactly. Whitney forced me to see the beauty in myself. He saw only my core. We communicated on a level of raw understanding and deep connection, even though we’d only known each other for a few short weeks. You can chalk it up to whatever you like but in knowing who Whitney is, the words people describe him as are things like magic, and enlightened.

I haven’t written about this in my personal blog. I’m not sure why, really. Maybe I wanted to “break” the story on bigger platform. I thought I’d burst out into the world as an established writer who has a new story to tell, and a big one at that, and people would devour it, just like I did with books. They’d eat it up and ask what they could do to help. I expected that. But after all these rejections from editors, I’m left wondering why. Why wouldn’t you want to publish a story about my friend who’s dying? About hundreds of thousands of people who are in the same position as him and maybe worse because they can’t afford or don’t have access to the treatment he receives? What about this huge, disadvantaged population who aren’t able to find medical coverage for a disease that won’t allow them to get out of bed?

I bought a white board a couple of weeks ago, and hung it by my desk. I have about ten pitches out to editors, and that’s going to double in the next week. I do this for Whitney, his family, and the heartbreaking stories I’ve heard in the last couple of months. As a writer, this is my calling: to bring the disadvantaged to justice. I’m not ignoring that. And now that you’ve read this, neither should you.

-step.

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