Saluting the Ghost Ship from the Shore

If things had gone according to plan, right now I’d be in the Dulles airport in Virginia, after a red-eye flight, five hours in to my eight-hour wait for the rest of my group to arrive, probably on my fourth cup of coffee, attempting to complete assignments and invoices and pitches at a little table in an airport cafe.
Instead, I’m watching my toddler inhale a breakfast of pasta with red sauce while watching that weird Minions movie for maybe the sixth time in the last few days. She’s had pink eye and a cough sort of thing since the weekend, and it was the final straw in deciding to stay home, and cancel my trip to D.C. this week.
I’ve had a day to process this, and it brought up a lot of questioning my identity, feeling like a ghost of myself, sitting there on the couch all day, breastfeeding a small child who I’ve long-since wanted to wean.
EmiliaWhen Mia was little, I lived in close proximity to her dad, and she saw him every other weekend. Even though this wasn’t the best situation for us for various reasons, it still afforded me time off, and a back-up person if I really needed one. Though I never went anywhere, I did get a chance to catch up on homework, work extra hours, and recover from my life as a single parent. I could date. I could go out. I could even, you know, have a guy sleep over.
With Coraline, it’s been a little different. I rarely get to step away, get a break, even when I really want to.
The trip I’d planned to D.C. was almost identical to my recent ones to New Jersey and the Bay Area in days of the week and length. I confirmed my usual babysitter was available. I bought tickets for a super cheap price. Then the woman who runs Cora’s daycare said she’d be closed that same week. My babysitter said sure, he could do all day. I set aside money, worked extra hours, to afford to pay him while I was gone. Then, a week before I was supposed to leave, he ghosted me.
IMG_0415I spent the next few days sending possibly hundreds of texts to arrange a schedule involving seven people. It was too late to board the dog. I found a place for Cora to go during the day, and a pet-sitter to come hang out with my anxious dog for a little while at noon. I devised an insane schedule that included people Cora didn’t know all that well. She’d be shuffled several times a day, and spending the nights at my house with her dad, who lately has had a difficult time getting Cora to sleep. Mia would also be shuffled around from school and with the neighbor and was pretty much in charge of caring for the dog in the morning and at night.
For some reason I felt horrible leaving this time. I was stressed over this conglomeration of a schedule falling apart. I didn’t know some of the people well, some of them at all. I feared Cora would be confused, upset, and missing me more. I missed my main person to take over the operation of the ship that is my life for a few days.
I’d been so worried over this, I didn’t prepare my house, my fridge, myself, for leaving. I didn’t mentally go over the trip, and try to prepare myself for taking the Metro around in D.C. I’d be meeting with a senator, and my boss’s boss at the Center for Community Change, and I had no idea what to wear.
By the time Cora showed signs of pink eye, and spent the day before I’d fly away on the couch, nursing, and sleeping, I started to prepare myself for canceling the trip.
This was admitting defeat for me. I’d tried. I probably still could have gone. But despite the several jobs I may have, my one job is to be there for my kids when they need me. Even though I don’t describe myself this way to people, I am a mom first and foremost, and a single one at that.
But I feel like this limits me and my abilities. I fight to overcome my past, I fight to overcome being in poverty, I fight to overcome the stigma that is being a single mom with two kids with two dads. I fight for resources and a community to keep us supported. And I couldn’t help but feel like I’d failed.
Because I’m also fighting to have a successful career as a writer, and possibly author, which will require me to travel. I start to question my abilities, as one “I can’t” bleeds into several: I can’t work this week, I can’t shower, I can’t sleep, I can’t go to the store because the baby’s sleeping on me or I’m too exhausted or I just don’t have the energy to care about anything we might be out of except for coffee.
Cheryl Strayed, as the Dear Sugar advice columnist, once wrote:

“Has sleep deprivation and the consumption of an exorbitant number of Annie’s Homegrown Organic Cheddar Bunnies taken years off of my life or added years onto it? Who would I have met if I had bicycled across Iceland and hiked around Mongolia and what would I have experienced and where would that have taken me?

I’ll never know and neither will you of the life you don’t choose. We’ll only know that whatever that sister life was, it was important and beautiful and not ours. It was the ghost ship that didn’t carry us. There’s nothing to do but salute it from the shore.”

So yesterday I surrendered. I saw not making the trip as saving hundreds of dollars in what I would have spent in child care. I finally broke down and bought a microwave. I ordered out for dinner, and might every night for the next few days. I stopped drinking a never-ending cup of coffee, didn’t work, dozed off while Cora slept, and went to bed at nine.
Cora woke up several times last night, angry that her nose was stuffed, that her eyes were full of crust; and wanting water, to nurse, or me. In between, I slept. Like, really slept. I could have slept most of the morning. I didn’t need any other reason to prove that I needed to stay. I desperately needed some down time.
It’s taken me a few hours to write this out this morning. Cora’s sleeping in my lap, and I’m refusing the urge to work. I needed to write selfishly, to process, to digest my decision yesterday, be confident in it, and salute the ship from the shore.


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:


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.
MillionsMissing graphic 2
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


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.

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.
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.”
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.