It’s been a long time! I know, I know. I’m not sure if this is the case with you, but it seems like the last few years have been a little hectic? A little, I don’t know, overwhelming? A little, how shall we say…ridiculously paradigm shifting on a near-hourly basis in ways that may change the trajectory of our entire futures?
Okay, the last few years have been such rich text that it’s going to be soul-searching decades really before any of us can unravel it all-but here’s a small moment in the midst I’d like to share.
I had a piece of flash non-fiction published this last April in The Fourth River, the literary magazine for Chatham University in Pittsburgh, Pennsylvania. This special print edition is called Disability: Visible and Invisible, an anthology curated by a disabled editor in a magazine that focuses intimately on the role of place on our lives. My piece “Petechiae” describes rediscovering my body as it moved from invisible to visible disability in the wilderness of Alaska.
On April 8th of this year, I had two events to plan into my day-watching the eclipse and attending a launch party! From top to bottom it was really beautiful to be a part of this magazine and (virtually) meet other authors. Reading our work and recognizing our experiences in each others’ pieces fed my soul, and reinforced how beautiful collaborating with and celebrating the disability literary community has been for me. Thank you to The Fourth River for creating this space. (Incidentally, my family spent a day and a night in Pittsburgh this summer on a road trip-and coincidentally stayed in a hotel practically on Chatham’s campus. It was a strange lovely little moment of stars aligning)
The print edition can be purchased through The Fourth River’s website here https://4thriver.submittable.com/submit and is a phenomenal collection of disability writing (and includes an Ode to Lara Croft that was amazing to hear read!).
Love you all, thank you for any and all support you’ve given me over the years,
Hi! It’s been a while but I am writing to today to share that a new essay of mine, Maintenance , went live today with Signal Mountain Review. (clicking on the title of the piece will take you directly to it).
I say “new”, but if you know the ages of my kids now this was actually written quite a while back when they were much smaller. So-pretty old in the chronological sense of the word, but new to the internet and you all! It’s about the maintenance work we do to keep our worlds running-and how very invisible and valuable that work is. It’s about messiness and neatness, chaos and order, crisis and stability.
The edge of the Grand Canyon, a guardrail blocking a fall off the edge, the effect a little claustrophobic, a little like a cage
When we went to the Grand Canyon with the kids two summers ago, I felt sick with unused adrenaline almost the entire time. Buzzing jolts of anxiety coursing through my muscles every time anyone got close to the canyon walls. It wasn’t enough to know that I was far away from the edge-I had to know that every other person was also nowhere close to the irredeemably sheer cliffs. My heart knew it couldn’t witness someone fall. There was no thrill for me in seeing someone dance on that tightrope and survive. I realized about halfway through that day that my fight or flight reflex had kicked into full gear and there was no way of doing either that wouldn’t be wildly dangerous. I had this instinct to pump my legs as hard as I could to get as far away from the edge as I could…and then… just had to…stand still. Carefully pick my way over uneven ground. Hold my quivering stomach down with abdominal muscles unused to that task. Watch a woman fall and sprain an ankle in front of me and not lunge for her hand before checking where the guardrail was (someone else caught her, and gingerly got her back up to the road and to a shuttle bus). I wanted to get as far away as possible from something that terrified me, and was utterly unable to do so. I had to move slowly, carefully, deliberately until I felt safe enough, until I was far enough away not to see other people risking their lives. It felt like an eternity.
It’s been a year of that adrenaline-sick state for me now. I count mid-February of 2020 as when I became terrifyingly aware of what was coming. There are a million reasons I am so finely attuned to the worst case scenario- temperament and genetics, medical history and neurology, working in a profession where I witnessed the effects of trauma and was taught how to prevent or mitigate it, raising children with a man who had unthinkably lost everything before he was a teenager –I am keenly aware of how none of us is exempt from the possibility of having very awful things happen to us. And I live in a country where very many preventable horrors are allowed to continue because they are convenient to the greedy and powerful.
For a year now my body has been flooded with an instinct to make big sweeping movements to dispel that awful energy, the energy of knowing there is danger and having no control over its presence. Of watching millions of people dance up to the edge of a cliff, bringing unwilling participants with them, and hundreds of thousands going over. My body wants to run as far as I can from this nightmare. But there is nowhere to run. We are literally kept in small spaces this winter, small circumscribed movements as we nimbly and carefully move six feet around each other in poorly ventilated spaces. In a more figurative sense, there is no way to escape. There is no part of the country we can go to that is safe, no way of leaving to other countries that had a plan and a collective caretaking spirit.
All I can do is make small careful movements. Pay attention to the uneven ground right in front of me. Place each footstep with as much deliberation and grip as I am capable of as my knees try to buckle out from me. Hold onto guardrails when they become available (but check that they are anchored and not rusted out before setting a hand on it). Watch that the people I hold hands with to guide me through, and me them, are trying their level best to get through day by day and inch by inch. Avoid the things that I know can push me over the edge, or have done so before when the drop was still horrible but wasn’t nearly as high. Stay away from those who skip blithely through pretending it’s all just a yellow brick road. Move so slowly my heart feels like it’s going to crack, even though the end is in sight and I just want to feel my legs burn and make a run for the solid wide path that will take us all back to safety.
A long time ago, it’s been maybe eighteen or twenty years now, I worked at the Chattanooga Zoo. I had volunteered there the summer before, helping out with a week-long day camp, and applied for a job as a camp counselor the next with a brand-spanking new teaching certificate. I knew next to nothing about animals, but quite a bit about kids. Seeing as I didn’t actually have to touch/feed/corral/clean-up after jaguars or chimpanzees or kinkajous, it worked out fine for the most part. Yes, there was some local TV footage of one of the petting zoo goats trying to eat my shirt. Yes, the smell of animal pens in summer is pretty strong. Yes, I once dropped a ferret that the kids were taking pictures with because it got super wiggly and I HAVE NEVER EVER HAD A FURRY PET AND FREAKED OUT-but overall the gig suited me. Coloring pictures of zoo animals, putting on animal-themed plays, supervising “Sharks and Minnows”, passing out goldfish crackers and walking kids over to the zoo keepers who actually taught them about the job was right up my alley.
So one of the activities we always did with the kids, no matter the age group, was design “enrichment” for the animals. We froze fruit into giant ice rings and watched the keepers hang it from a tree, and then watched the chimpanzees work to get their treat out. We filled paper towel rolls with whatever food raccoons eat (I couldn’t tell you, despite actually physically holding their food-I absolutely don’t know what to do with animals) and tied tissue paper to the ends to make them puzzle out how to get whatever they could smell but couldn’t see. The Chattanooga Zoo often takes in animals that have nowhere else to go-there might be a serval cat abandoned by its owner here, a declawed mountain lion confiscated from other owners there. These animals are saved and cared for-and not really meant to be in a zoo.
My husband and I have been kind of sharing an office for the last six months. He used to travel every week for work, and this is the longest stretch of time we’ve been in the same state in the last thirteen years. I duck in and out occasionally to get some writing done or to find an old file or grab a new book, but I’ve kind of abandoned my stake in the room for him to get all of his conference calls done in peace. One time back in March or April when I had snuck in quietly, mimed the question, “Are you on video?” to which he arched his eyebrows in a “Yes”, I got to hear a question from his Zoom call- “How are you doing out there?”
My guy laughed and answered, “You know, it’s like being in a zoo. It’s a really nice zoo. It’s got great amenities, all my favorite stuff. I have a good view out the window and I’m keeping fed. But you can’t leave.” I thought about that a lot for the rest of quarantine, about what animals and people are meant to do and what we’re stuck doing right now.
A mountain lion isn’t meant to pace back and forth in an enclosure, no matter how well furnished the enclosure is or how closely the artifice matches its natural surroundings. The tarantulas are not meant to be in small plastic boxes and handed crickets. I bet we had migrating animals that sure as hell weren’t migrating down Holtzclaw Avenue.
When animals can’t do what they are meant to do, they can become despondent-and this is where “enrichment” comes in. Zoo keepers I’m sure have a lot of other tricks and tools, but it never escaped me that having them there to set up new puzzles and games was definitely important to the animals’ well-being. When you can’t escape where you are you need something to keep your mind sharp, novelty to look forward to, a challenge and a treat.
Towards the end of summer before online learning was supposed to start we all had kind of lost the desire or ability to keep morale up. We don’t do much outside the house. When we do it is carefully couched in precautions, or moved to times when we’re less likely to bump into a million people, or spaced out from other outings to minimize our risks. We are working on fixing up and decorating our enclosure. We try to make it more usable and well-equipped. We’ve been in our zoo for six months.
Humans are social creatures, a species that famously enjoys solving new and varied problems by going out into the world and grappling with the complexities of whole communities, whole societies. Everything we just do for survival-feeding ourselves, securing shelter, keeping hydrated-has become a collective activity that involves hundreds if not thousands of people working cooperatively. Human beings as an animal species has evolved over millennia to interact with each other and to keep our brains busy. No matter how introverted I may be, it seems to be an inescapable truth that being on my own with just a few other people the majority of the time is at odds with what is optimal.
We had hummed along doing okay for a long time, and then we weren’t. There is undoubtedly immense grief we need to move through, worry to constantly temper, and uncertainty that erodes the foundations under our feet. But in addition, we have had to be both the zoo animals and the zoo keepers AT THE SAME TIME. We have needed enrichment and don’t have thoughtful caregivers who fuss over our survival and our happiness as their sole job. We don’t have some outside benevolent force arranging things to challenge our brains or surprise us or delight us. (I mean if you’re very lucky you might-Thanks Wendy!) For the majority of the time, especially over a long daycamp-less summer, we’ve had to arrange for enrichment for ourselves. And the longer this summer has worn on the harder it is to come up with something you’ve never thought to come up with before. It’s like trying to tickle yourself-which is to say it’s nearly impossible. You can occupy your time pleasantly enough, you can indulge in treats, but it’s really incredibly difficult to challenge or surprise yourself without outside help. We try to be thoughtful zoo keepers for each other, but generally most zoo keepers get nights and weekends off and have someone else picking up the overnight shifts so that they can have time not thinking about caring for zoo animals 24/7.
The kids started online school two weeks ago. And having been a teacher before, having seen a zoo in action and now really truly getting how important enrichment is for somewhat trapped creatures I hope I don’t sound insulting when I say how happy I am to have some zoo keepers back in our life. Having teachers thoughtfully working out how to keep students engaged and challenged and socially happy has taken a huge weight off of our shoulders. Having a collective of humans working cooperatively so that we all share the load of figuring out how to give kids what they need feels so much more aligned with what humans want to do. We want to have community, we want to solve problems at an interconnected level. This can’t be easy for our teachers, not at all, and I hope against hope that they have time to rest and that they are being cared for by the people in their lives. But I am relieved and happy with this part of our lives changing.
I still have to figure out my own enrichment, but without worrying about whether my kids have enough I think I can. Writing this blog post alone is self-administered enrichment-my brain has something new to focus on, a puzzle to work through, a treat at the end. I heard once that being a writer is giving yourself homework every night for the rest of your life, and that feels true and relevant. I’ve also signed myself up for an online class, so that maybe when that starts I’ll get a break from being my own zoo keeper for a while-since it seems quite unlikely that I’ll get to escape this zoo anytime soon.
There is a passage in the children’s book The True Confessions of Charlotte Doyle by Avi that I’ve been thinking about a lot throughout the pandemic and shutdown. The premise of the book is that our protagonist, Charlotte Doyle, was put on a ship from England by herself in 1832 to join her family in the United States. She wasn’t supposed to be the only passenger, but she ends up being the only passenger, the only child, the only girl or woman on the voyage. The captain promises to look out for her-they are from the same class after all and he can’t have her falling in with the uncouth sailors-until it becomes clear that the men are going to stage a mutiny and she eventually realizes that they had just cause because the captain is cruel. She decides to join the crew, who have justified suspicions about her initial closeness to the captain, and so is presented with an initiation rite to solidify her place and her protection with them. She has to climb the tallest mast up to the crow’s nest and back down again.
It’s a terrifying task. The heights alone are bad enough to frighten anyone her age, much less the rough and unstable rigging. The swaying of the ship becomes more and more pronounced the higher she climbs. At some point she realizes that her reward for braving this seemingly insurmountable obstacle is that she will have to do this same impossible thing multiple times a day as part of her work for the crew for the rest of the voyage. It truly seems unthinkable until it is done. Then it becomes just part of her life.
We keep being presented with terrifying or incredibly difficult tasks where the reward for facing them is that we get to keep facing them over and over, but with now some new measure of familiarity and experience.
About a month ago I took my first COVID test because I was symptomatic. With all my chronic illnesses, with all my pain and fatigue and prickly skin and fog throughout the years-even when I went to the ER with chest pains and had to rule out a heart attack and even when I’ve had walking pneumonia- I have never had shortness of breath. I have never felt like I was gulping for air, that every few breaths I had to concentrate to consciously expand and fill my lungs against the constriction of my ribcage. I asked my doctor if taking a COVID test was appropriate and she sent me to their respiratory clinic-a converted immediate care center where I was to wait in the car when I arrived so that the whole staff could get into multiple layers of PPE. When I was allowed in, I was the only patient, and was given a second mask to go over my cloth one. Plastic sheeting narrowed the lobby into a ribbon of a hallway so that all the soft surfaces of the waiting room had a barrier between me and them. I told the doctor all of my symptoms, as much of my backstory with chronic illness as I could. We did a chest x-ray in another thoroughly sterilized room. It was explained to me that this particular COVID test doesn’t have false positives but there is a ten percent incidence of a false negative, so even with a negative I would need to quarantine for ten days after being symptomatic. At the end of the appointment I would take the test by driving to the back of the building and sitting in my parked car, head leaning against the headrest as the nasal swab went further up than I expected. I went home, had my husband get my brand-new prescription inhaler from the pharmacy. I limited my movement inside my own house so that I had less contact with my kids, wiped down everything I touched and waited two tense days for the negative result.
I was terrified. From years of doctors not taking me seriously I was terrified to speak to a new one. From years of chronic illness I knew that if I had contracted COVID that it might be horribly difficult to fight off. I might not be able to. From years of my children covertly worrying about my health I knew that this could wreck any emotional well-being we had carved out of isolation and disruption. The building I went into for care looked like the set of a horror movie where I was not meant to make it past the first act. The idea that I might have been around other people who didn’t have fifteen layers of protection between us felt like the worst mortal sin I could have carried. Not knowing what was causing my shortness of breath sent me into a purgatory not knowing how long I might have to live in not knowing-it might have been forever.
Now? The memory of feeling so terrified that day that I couldn’t silence alarm bells pounding through my brain has faded just a few weeks past my quarantine ending. I don’t know and can’t say whether it becoming a normal “something-I-did” is psychologically healthy in the long run, but it is protective now. I have data in my mind of what would need to happen if I was sick again, or if one of the kids was, or if someone else in my family was. I would not need to contemplate every foothold and rough rope as I climbed a second time, experience would have given me ease with something I would rather have absolutely no familiarity with at all. But that choice wasn’t up to me. My reward for doing something terrifying is that I would know how to deal with it myself again, or be able to carefully shepherd someone else I love through the process.
So quickly, so rapidly, the circumstances of our lives have changed. Our understanding of the world has changed. In some ways, irrevocably. Some things that have needed to change have finally broken open. Just like the mutiny on Charlotte’s ship, building wealth on the broken backs of people you couldn’t care less about has inevitable consequences. Some things that should never have come to pass are terrifyingly present and a clean cold light is shining on them. For example, a country’s leader who barely looked up from a Tweet or a golf club as 160,000 of his people died. I marvel pretty much every day at some new understanding or revolution or horror that in ordinary times would have been years in the making (or undoing) but now happen and become a new reality in the blink of an eye. Because it’s all so fast it’s exhausting and hard and it’s difficult to give each moment the depth and detail of exploration it deserves. But it all changing so rapidly gives room for new ways of thinking about ourselves, our world, how we have always operated within it and whether that is at all acceptable to our souls.
We keep climbing to the top of the main mast, gritting our teeth against fear, keeping as intense a focus as we can on splintering wood or fraying knots or the wide gap between footholds big enough to swallow us up if we slip. And when we get to the top and realize we are proved capable of doing what seemed impossible just a little while before, there is some exhilaration and freedom to look out from those dizzying heights to see ourselves and the world differently. When we come back down to the deck there are crew members who have become friends waiting to do this hard work every day. We now belong to each other in ways we hadn’t before. Our reward for facing down the impossible fear is to keep showing up, to keep facing it for as long as it takes with other people who are showing up with us to do the same.
A huge part of whether social change happens depends on what narrative people get. Whether publishing, social media, scriptures, what our friends and family repeat-stories literally shape our ideals, perspectives, what we do, who we support.
We have this illusion that we are given all the facts and are coming to our own conclusions-an illusion supported by the sheer volume of information we have access to that we didn’t before. I can see videos of police brutality in real time from a protestor on the street-I can see with my own eyes proof that a black man was assaulted. That isn’t an illusion. But the idea that because I have access to that democratizing flow of information my world view isn’t shaped is false. The narratives I see are still shaped by people who have agendas of their own-but it has become so seamless that it is hard to see.
Based on that illusion I was wondering why I was mostly fluff from O, Oprah Magazine on my social media feed. It seemed the strangest omission for this TV mogul, this billionaire who can make an author a best-seller with a recommendation, who produces Black TV and movies, who champions representaion-Oprah Winfrey knows how important her voice is. She knows exactly how to shape the way we think about issues, she hasn’t shied away from supporting the Black community. So why was I getting nothing but stories of Taylor Swift’s makeup? Or Meghan McCain’s pregnancy? Why wasn’t her name on anything related to George Floyd’s death, or Black Lives Matter, or protests around the country. It was a glaring omission. I had been on social media almost non-stop for the last 48 hours, glued to footage to try to make sense of the sheer volume of violence enacted by police on peaceful protestors, and these were the posts I saw from O Magazine.
So I went to the O, The Oprah Magazine’s page instead of relying on what was in my social media feed. It turns out that some algorithm had decided that I only wanted to see the fluffy posts. The next eleven screenshots are from O Magazine posts I had never seen.
Every single post about Black Lives Matter had been buried and hidden-even when the subject of one of those posts was Taylor Swift, a celebrity the algorithim had already decided I was interested in hearing about. Most startling to me are the posts where Oprah is directly addressing white women and their role in upholding systems of oppression-and I never saw them.
Two things:
1.These are suppressed for a reason-if we had access to these stories about people caring deeply about injustice and police violence and racism it would absolutely shape they way we see the world. And there are obviously people who do not want to see that happen and are keeping white people from seeing this. These stories MATTER.
2. Even a billionaire with a media empire is subject to racist algorithms suppressing the messages she is trying to send. Do you have any doubt that social media had tried to suppress people without her vast resources and connections?
Part of my enamel pin collection in small boxes. You can see a Princess Leia, a rainbow brain, a hedgehog, a goldfish, and a record player among other pins
On the last day we got to hang out, the kindergartner I work with came in from recess bouncing. I watch out for him on the playground, making sure he has lots of time to be goofy but that he doesn’t start a revolution of five-year-olds refusing to come in when the whistle blows. On Fridays my job is (was? I don’t want to think about this in the past tense) easier because it’s hot lunch day, but then he books it inside while I struggle to keep my speed-walking from becoming a full-on sprint, quietly calling after him “No parkour-walking feet, walking feet!” By the time I catch up with him and have folded myself into the tiny chair next to his desk, he’s bopping his head chomping on his first bite, declaring through a mouthful of chicken fingers, “I did good today!”
“Oh absolutely, dude. That’s going in the report.” I’ll circle a big smiley face on the daily form.
“It’s supposed to be filled in, not circled.”
“You’re right, my man, I forgot.”
On Mondays, without the lure of once-a-week fast food, the way I got him to cheerfully come inside from the playground was by switching up the enamel pin I would put on the lanyard for my employee ID, covering it up with my hand and asking if he had noticed which one I was wearing. He would giggle and shake his head “no”. The rules of our game meant I wouldn’t reveal which pin I was wearing until we got all the way to the classroom. On Mondays, and Mondays only, we would walk in together at a leisurely pace, his eyes squinting in a smile locked onto me until I removed my hand for the big reveal right inside the classroom doorway.
The last Monday I worked he was absent, home sick with super-ordinary-for-small-kids-in-the-spring croup. I was home with the same ordinary virus the next few days and then? Then school was over for the year.
I miss the routine of changing my pin once a week. I miss taking thirty seconds each Monday morning to let him know that we are a team bound together by games and silliness and affection. I miss picking out which one would seem like a good-enough surprise, a good-enough reward for coming in from outside. That last Monday the pin I had put on was Dory, the blue tang, swimming in her coffee pot. It’s my favorite, and his favorite, too, and the first pin he noticed that set off our game.
I’m not changing it until I see him again.
This was a piece I wrote this week as an assignment from the Steppenwolf Education Department-for Maker May they had a two part webinar with essayist Samantha Irby and Ian Belknap of Write Club discussing and developing Live Lit-pieces that are meant to be performed. Maybe I’ll eventually figure out how to post a video here as well, to adhere better to the spirit of the assignment! These were written and revised with a two minute limit in mind, about something from before lockdown that you miss terribly. I want to thank them so much for everything. It was a welcome change of pace, and some of the only new writing I’ve been able to get myself to do. Incidentally, my eleven-year-old had an almost identical writing assignment for his online classes this week. Although his video conference was, like, his twentieth, and mine was my first.
I wrote this flash non-fiction a while ago about a blizzard that happened in Chicago in 2011. I’ve been thinking about it a great deal as the whole world prepares to shut down to stem a pandemic and stares down what it is like to be locked away from other people for extended periods of time. My chronically ill friends already know what it is to be isolated at home when no one healthy seems to realize that this is how we’ve already been living.
At least two inches of snow packed against the side of a picket fence, giving the impression of soldiers in formation facing a formidable foe together.
I had enough bottled water and milk, Goldfish crackers and juice boxes, diapers and wipes for at least a week, if not two. I had enough packages of chicken and ground beef and pork chops and hot dogs in the freezer to make dinners for seven nights. Cans of soups and beans and bags of rice in the pantry. If the power went out I had industrial size jars of peanut butter and jelly and several loafs of bread, individual cups of applesauce, mandarin oranges.
In the house I had an extensive first aid kit, wraps and splints, thermometers and burn cream. I had backup ibuprofen for children and adults. All the flashlights had batteries. Extra batteries. Chargers.
We had our DVD collection if the cable went out but the electricity didn’t, board games, the blue cube cloth bin of Hot Wheels cars and the entire cabinet full of Hot Wheels tracks, the bookcase full of stories to read aloud. If the wind howled too violently, we had the old couch cushions we used to pad the tile floor of the laundry room during tornado warnings. We had a thick pile of blankets and footsie pajamas.
Everyone called the day before the blizzard asking if I was ready. If we had fuel for the snowblower (always), a full tank of gas in the car (yes), water and food and emergency supplies (I do). In every conversation my parents, my in-laws, my brother, my brother-in-law warned me that the crowds were hectic at the grocery store or the lines were long at the gas station and I verbally shrugged that I didn’t need anything. They got confused. I was confused at their confusion until it crystallized-they didn’t know this was how I always had to live.
At this point it had been four years that my husband had been traveling for work almost every week. It had been two years of being a mom to two small boys, and the only caregiver 24 hours a day for three or four day stretches. It had been one year since the pain started that wouldn’t go away and didn’t then have a name. I was always prepared for multiple days of isolation with a four-year-old and a toddler. We weren’t always trapped, but we were too often trapped by my sudden, changeable and unpredictable limitations. The week of this blizzard, my husband had left before the forecast showed what was coming, and flights weren’t returning through white out conditions. It was just the three of us, as it often was.
My family misunderstood what sort of help I might need because I’d adjusted to my new reality when they weren’t looking. Cold had started to make my muscles crack under the strain, light dazzling off snow might send me into migraines. The room could spin or my limbs would get heavy or my hands would cramp too hard for me to hold a potato I was supposed to peel for dinner. Our home was well-stocked and prepared because I needed to care for two little people when my body would sporadically make it nearly impossible to leave.
I spent the night of the storm awake and alone, bolt upright in bed feeling the air in the room vibrate with energy as the windows shook in the wind, and watching the lights flicker out but eventually hold. Lightning began, but instead of brilliant and shining, the light was gauzy and diffused through the snow. Thunder rumbled loudly enough to keep me vigilant and alert, but quietly enough that the boys stayed asleep in their beds. I could have used my babies snuggled up against me, light snores giving me white noise and the weight of their arms draped on mine, keeping me from clutching a phone in one hand and a flashlight in the other. I could have used the solidness of their needs to keep me from worrying what if, what if, what if. But they weren’t and this night passed like so many others by myself-watchful waiting to see if a problem cascaded into an emergency that meant I needed to call for help. How many nights had I spent alone waiting to see if a pain became unbearable, if a blinding crack of a violent headache meant I needed to call 911, if a weight pressed on my chest was my heart failing? How many mornings had I woken up worse for a horrible night but still alive, tasked with making our little life at home happy? How many times had I quietly panicked and never told anyone?
By the time the streets were halfway plowed, family came to dig us out. I happily made hot cocoa for our guests. It was nice to have company.
Something a blizzard can do, because it’s large and dramatic and a shared trouble, is bring people who might understand how to help to your doorstep.
My illnesses, small against the scale of the world, invisible because I could almost cope, and almost untranslatably personal, often didn’t.
My kids didn’t know about this website until last night, and I don’t know how that’s possible!?!
My oldest kid said, “This will sound goofy, but I didn’t know blogs were on websites.”
My youngest said, “I thought websites were like these fancy, hard-to-get things.”
I had to explain that websites aren’t super hard to get, and that yes a blog is usually on a website, and that I’ve had this one for five years now and like how did you not know???
They explained that I don’t often explain the ins and outs of writing and publishing except to let them know when I submit a story about them (we read it and I ask if they feel comfortable with it or not, and if they don’t I don’t) and to tell them when an essay goes live and occasionally they see me a bit bummed when I get a rejection. My oldest will ask me how my day was and nod approvingly when I mention that I got a lot of words down, or did revisions, or handled submissions, or found a new literary magazine to submit to, or went mildly viral on Twitter for something mildly embarrassing. But they didn’t know this website here existed.
We Googled pictures of ourselves. They don’t have any online easily attached to their names yet (no social media accounts so far) so it’s funny to see their alternate lives as a cross-country runner from Minnesota or model and photographer in Paris. When I look up “Kristin Wagner” there are sooooooooooo many women who are not me. Gynecologists and real estate brokers and what not. I didn’t think about how common my married name was until the last couple of years. I shifted the name of this site to kristindemarcowagner.com and when I look up “Kristin DeMarco Wagner” it’s all undoubtedly me. Most of the pictures are from here or Twitter or Instagram. Showing the boys that Google search led to their realization that I have a website, and my astonishment that they were clueless about it.
But also!!!
The Google image search led me to an article I had assumed hadn’t happened because I missed when it did come out. Editors from The Kitchn had asked fans of Samin Nosrat’s book Salt Fat Acid Heat to share what they loved about the book. I jumped at the chance to fangirl over it a bit, because I absolutely adore the cookbook and the Netflix series and have prints of the illustrations for it in my kitchen. And the Google image search last night led me to 8 Cooks on Why Salt Fat Acid Heat is Such a Special, Unlikely Hit and I am in there as one of the cooks! A home cook, absolutely. A home cook who made Rachel Ray Sloppy Joes and tater tots last night. A home cook who has two kids who, when I exclaimed “Oh, I love when I get to do even a little food writing!”, said to me confused “You don’t do food writing”. I told them that maybe they don’t know everything I write while they’re at school for 6 and a half hours a day, since they didn’t even know I had a website for my blog posts. And then I defrosted another gluten-free bun in the microwave so that my youngest could have seconds and we talked about school.
Some of my cookbook shelves, with Salt, Fat, Acid, Heat displayed
And perhaps that’s what I love about Salt Fat Acid Heat so much is that it is a cookbook that is detailed and specific and techy, but also incredibly accessible. It lives and breathes with people who are just working on making everyday meals with people we love more enjoyable as much as it resonates with really accomplished and finessed world class chefs. So last night was neat. The link to the article is embedded in the title of the article above.
Talk to you all later!
Kristin
P.S. A quick note about the sloppy joes-I added seasoning to the meat at a different time because of Samin. I added a splash more vinegar because of Samin. I cooked the meat and vegetables differently because of Samin. Every simple meal is just tweaked a little bit for the better, even on a really ordinary night.
An illustration from Salt, Fat, Acid, Heat that’s on my kitchen wall called “Buried Treasure” featuring radishes and beets
It’s been a bit, huh? Well, hi! Hope you’ve been doing well in the interim.
Way back at the beginning of 2019 I finally had a completed manuscript for my book. An essay collection about chronic illness, and being neurodivergent, and about being a disabled mom, and about disability advocacy and representation. I had arranged parts by theme or topic and my reasoning for doing so was that illness/disability is ongoing and chronic and there was no diagnosis-treatment-cure narrative arc for my life. When I began writing about all of this that was the case-I was collecting more symptoms with no end in sight and had basically felt that people didn’t really understand what my parallel existence looked like-so I would show them.
Except…halfway through writing the essay-chapters I did get a diagnosis (Lyme and Babesia) and did undergo treatment that helped. So I was complicating things unnecessarily by intentionally NOT putting the book in chronological order. A huge overhaul was underway-rearranging, adding chapters to fill in details, revising what was there to make more sense, splitting up the appendix of medical conditions. With this version fairly well in hand I queried and well…
I got back really useful feedback that rang true as soon as I heard it.
It was too much. Too scattered across ideas and styles and conditions. Too scattered in themes and tone and too much detail. This isn’t verbatim at all, so we’re clear. The way the stories came out of my experience and my brain wasn’t the way it was the most easily or most enjoyably understood by a reader. There was a disconnect between what I thought I could give and what was most appreciated in a gift.
It rang true, but I didn’t want it to because I wasn’t sure I could tell a story straight. Each time I have tried to revise something in the past that was too much into something that was more digestible and normal I have not been able to. I lose something, and my new revised version isn’t quite right. It’s a B or B+ at best, when there are other people nearby doing consistent A work. Fear of another revision was the fear I’ve had so much of my life that when I try to do what neurotypical people do, I only do it-at best- 80% as well as they can. Which is not quite enough. It is nothing to be ashamed of, but it is often close without being right-and that can hurt more than a straight up swing and a miss.
So I thought about it. A lot. A lot, a lot. I went back and forth so many times trying to figure out what to do. One the things I did was to consider the Chihuly museum-somewhere we visited right after I got this feedback. His glasswork is vibrant and riotous and often odd, and I was saturated with the texture of one piece, the inner shine of another, the contrast of colors on another. There was so much to look at, to take in, to notice. This is what the inside of my brain often feels like; it was like an external representation of what I loved and celebrated and wanted to share. As I began to feel overwhelmed by it all I noticed something that was, in retrospect, so obvious I feel silly. Each art installation had boundaries.
It may be that all the pieces in a chandelier are the same color.
A green glass chandelier with many glass bubbles
It might be a room of vases in a similar shape but all different colors.
Huge wavy glass vases, in firey magenta orange, blue, yellow, green
It might be a room that is a fantastical representation of a real life setting.
glass sculptures in reds and yellows and blues and greens mimicking under the sea
It might be boats literally holding and containing variations on a theme.
A black background and two rowboats, one filled with colorful glass globes and the other with abstract flowers and bulbs
Those boats have been a visual guide for revising my book yet again. The one on the left has so many beautiful individual pieces-that are all spheres. The right has so many beautiful individual pieces-that are all botanical. The boundaries are what keep all of the thousands of pieces from being a jumbled overwhelming overstimulating experience. This art wasn’t straightforward portraiture, or sculpture. It was whimsical and weird, but impactful because of a few well-formed conventions. I felt like maybe I could do it. My essays could be contained in different boats. The simple idea that I could have more than one boat was a revelation! I didn’t think that would ever be allowed! Maybe I thought everything had to be thrown into the world at once because I wouldn’t live long enough to have time to do so-or maybe that I wouldn’t be given enough opportunities if I messed up the first one. Better to cram everything in at once, I think I thought. But this was showing me I didn’t have to.
I’d like to say I decided right then and there that I knew it was right to revise, but I didn’t. I was still scared and didn’t know if I had the skills to shape the whole thing again-limiting the narrative scope and turning brief bits of stories into an arc. Someone else (the fabulous Captain Awkward) gave me many tools to help decide what was right-one of them was assigning music to different chapters and see how they sounded together. Were they discordant? Was the tone smoothly shaped along the way or were styles jarring against each other? Was the mood of the music what I had hoped to accomplish? And in doing this exercise I realized both that no, my book wasn’t yet a playlist that made sense, and that yes, I do have some sense of what is conventionally “correct” and even maybe beautiful. The revision felt both like something that could be done successfully and that I could do successfully.
So August, September and October were spent revising, taking thirty thousand words out of an eighty thousand word manuscript and making them the basis for something new. I am proud of it, whatever else may come. I am proud of learning what I’ve learned about myself and my craft from doing this. The learning never, ever ends. But I haven’t had much time to write much else-not here. My submissions for individual essays have slowed down. I haven’t been published this calendar year, which is kind of painful in the way that jealousy stabs your heart and the industry wants to make sure you have a public presence as much as possible before they bet on you. But I haven’t stopped writing. And a lot of it, I think, turned out good. I’m happy.
Kristin DeMarco Wagner 