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.
A selfie where I am lying down and the picture is oriented sideways. I am wearing a teal shirt which compliments my green eyes
2018 began with an e-mail letting me know that the results of my Lyme test were in my patient portal.
I wouldn’t have my follow-up appointment with my doctor for another few weeks to let me know what to do about it, but there the results were. Positive. I hadn’t been mentally prepared for it, not really, even though my personal medical intuition-informed by literal years of reading about anything and everything related to my symptoms-had been honed to a sharp blade and I was rarely wrong anymore. I sought out a Lyme Literate doctor because by September of 2017 I was pretty damn sure. I wanted very much to be wrong. No one really believes in Lyme as a chronic illness. Tests are not the most accurate. The treatment is often not covered by insurance and treatment is physically hard on your body. The science is not 100% there…yet. And if I gave myself over to a treatment that amounted to nothing more than potentially hazardous snake oil? My credibility as the expert on my own body and competent caretaker of it would be shot through with doubt. I was not sure I would trust myself again if this went wrong, nor was I sure that other people would or could or should trust me on matters of my own illness. That was excruciating.
My husband and I talked about it a great deal. We talked with other people who had personally gone through diagnosis and treatment and had good results. I had a doctor who was insistent from the start that we would never overwhelm my body with more medication or supplements than I could take, that this was never going to be a miracle cure-I would always still have Lyme, it would just be an infection that was appropriately kept in check, that I had final say over what course of treatment I consented to-and that she would never pressure me into consenting to something I was wary of, that the goal was to get the infection (actually infections, as I have Babesia as well) in check and get me off of antibiotics and supplements sooner rather than later.
Do you know what it means for you to have faith in a doctor when so many failed to help you? There was only one doctor who was outrightly belligerent to me when I desperately needed help. Most of my overwhelming disappointment with doctors was that I would have a life-altering symptom, we would run the standard tests to see what the matter was, and when I walked away I would have a few negative tests results and a shrug. No information about how to control my symptoms. No clues as to what went wrong in the first place. Just shrugs. Doctors only spend every waking second trying to solve a mysterious diagnosis on TV shows. Most of my doctors were well-meaning but overworked, experts in difficult and widely known diseases I didn’t have that occupied most of their research time, and specialists who are dealing with different body symptoms who rarely consider that pelvic pain and hypoglycemia and hives and plantar fasciitis could possibly belong to the same systemic problem. I never gave myself over to unquestioning faith in my doctor, but I began to let myself have some faith in her.
I started treatment in late January 2018. I want to say I tapered off of the majority of my supplements and medicines by mid-March. The whole of February I spent the first half of every day in a haze, a fog so thick I mostly ate and sat and slept. I would take the kids to school, then take my medicine, then deal with the fog. By early afternoon it would lift. I would get the kids, complete the few tasks we needed completed to keep our world running and rest again. I recently looked back at pictures where I didn’t hide behind make-up. I looked grey. My face and lips and eyes looked like the color was drained away. I wore my softest clothes and binge-watched a lot of TV, something I’ve never really done being normally just a bit too restless for that. When I stopped the bulk of the serious medication, I kept on with maintenance supplements for a while. Many of my most problematic symptoms had faded away. Slowly I began working back up to my normal life (and my oldest broke an ankle just a few weeks after I stopped the bigger part of my treatment, so normal life wasn’t normal until about June). I still looked grey in early May. By one each afternoon I would fall into a dead sleep.
By July I realized that I passed out nearly in a dead faint after eating gluten at lunch, shaking with sudden chills, unable to stand upright. There is more to the story than that, but I’ve mostly told that story in an earlier blog post. Since August my youngest and I have been gluten-free. And my immune system seemed to come back on line. It sent my body for a loop. Suddenly immune-regulating medication I was on was dosed too high, and hormone replacement therapy I was on was dosed too high and I had skull-crushing headache verging on migraines for weeks at a time until I finally got the appropriate doses figured out just these last couple of weeks.
And I feel…good.
More often than not, I feel good.
I had given up on that ever being possible.
One thing that most helped me realize that I could trust that going into treatment was going to be the right thing to do? It’s that I had done a lot of work over the last several years to work through the grief of being sick and I had come to accept that my life-my smaller, less capable life-was absolutely still a valuable one. I really had accepted that feeling good might never be a possibility again, and I had made some amount of peace with that. But my heart-my heart was struggling to beat as quickly as it should have been. My heart was slowing down to dangerous levels. I had decided both that my disabled ill life was worth living and that it was in danger that needed to be addressed.
Lyme can infect your heart.
I wasn’t looking for a miracle cure, one that would let me climb Everest once treatment was done. I wasn’t in a desperate place grasping at straws, clinging to gold-plated hollow promises that I could be “fixed”.
I was looking to stay alive, because I loved the life I had in the middle of illness.
It was in that place where a leap of faith was possible and as measured as a leap can be. I knew what cardiologist I was going to approach if my heart rate didn’t recover or got even a little bit worse. I had an EKG through the local hospital that told me that my heart was strong but slow for some (to them) unknown reason. Now, about a year later, my heart rate stays within normal ranges for a person of my activity level. My heart is now beating in a way that makes it more likely that I’ll survive the next year, and the next.
This has been my 2018. I’ve done a million other things in the meantime, but from beginning to end it has been a year where I listened, figuratively and literally, to my heart. There were risks where I gained rewards I literally didn’t think were possible a year ago. There were risks that could have made this coming year a one of recovery from very bad failure. This isn’t prescriptive. If you don’t need to jump, maybe don’t? That leap can be very dangerous. Whatever your leap of faith is about, if you’re thinking about that leap, don’t go about it willy-nilly. Don’t jump with your eyes closed. Weigh everything. Research, examine your mental state, your motives, don’t jump out of a plane without checking your equipment five hundred times. Have contingency plans, and be cautious. But, if you’ve done all those things and you still find that the risk-whatever that may be- is worth it, I certainly can’t tell you to always play it perfectly safe. I didn’t. For once that worked out better than I dared hope.
ID: A lot of gluten-free products that my wonderful cousin Michele gifted us to help us on our gluten-free journey
Whew. I’ve been writing a book for the last two years now (off and on between everything that has happened to us and the world between August of 2016 and today). A large chunk of the writing is about what it has been like parenting with chronic illnesses. As I looked back on blog posts and diary entries and photo albums I have been reckoning with the idea that my youngest had inherited pretty severe anxiety from me. I wasn’t sure if it was the messaging he got when I was undiagnosed and very sick (that the world can be scary and unpredictable), or a unique set of genes that seem to have skipped my oldest. I blamed myself, often, for passing this on to him. I had stalled out on a chapter called “Inheritance” because I needed to make peace with my internalized ableism, with the idea that having my children become like me might be a curse. I have passed Lyme down to my oldest, but so far his immune system is keeping it in check. Lyme is awful, and I wouldn’t wish it on anyone much less my children who didn’t ask to be born. The harder part, though, is seeing some personality traits that had plagued and tortured me much of my life live on in them.
Especially with my youngest. I recognized the same reactions to failure that I had, the same reluctance to try something new or to try something new publicly. The same pressure to make creative endeavors perfect. I have a lot of blog posts about these moments with him. I have worked with myself so much to make sure I am not passing down an environment soaked in perfectionism. I’ve tried so hard practicing being kind to myself. I’ve tried to model taking chances that just ten years ago would have been completely unthinkable because it would have involved too much risk. But, just as with my illnesses, a purely cognitive, positive-messaging, psychological approach made only a small amount of difference. That difference was important, and necessary, and has made our family life a lot happier, but it didn’t change the underlying anxiety that was humming throughout our days.
Even though I gave up dairy six years ago based on a food diary and accompanying horrible symptoms, I never felt I had a problem with gluten. I swore up and down that the few times I gave up gluten felt worse that ingesting it. Until I got treatment for Lyme. And we tested my oldest for Lyme. And tested out an elimination diet for all of us this summer. Turns out a huge amount of my immovable fatigue was related to eating gluten. And my inability to regulate body temperature. And my neck and shoulder pain. But it was so obscured by all of the other horrible symptoms I was experiencing that I didn’t recognize it.
Turns out that the current of disabling anxiety electrifying my youngest’s brain starts when gluten in his system flips the switch. I don’t want to tell all the details right now, because it is hard to think about how often he must have felt so awful. Suffice it to say, when he eats gluten he becomes inconsolable. All those years of trying to comfort him through his worst times with a hug and the right words and not having them work became clear. There is only so much a hug can help when your brain feels like it is on fire. And until he had days without his brain being on fire he thought this was an inevitable part of who he was. He would tell me he hated himself. He can feel the difference now. He doesn’t hate himself any more. He does still hate how he feels when he is off, but he can separate that feeling from who he intrinsically is.
One morning recently he had cereal that was not officially gluten-free; it was made in a factory that also produces wheat cereals. Within fifteen minutes his eyes became glassy and he started to tell me his joints hurt and he didn’t want to go to school and just hugged me tighter and tighter. I had him take enzymes that can help break down gluten in case of accidental ingestion. Within another ten minutes his emotions righted themselves. It was scary and telling. There is no doubt in my mind that gluten has been hurting him for years.
This may also be inherited. It could be Celiac disease, an autoimmune disorder that can run in families with other autoimmune disorders like Hashimoto’s or Rheumatoid Arthritis. I could take a 23 and Me test to see if I carry genetic mutations for Celiac. As I go gluten-free some of my autoimmune conditions seem to be reversing, so it is possible that it isn’t just a sensitivity but a trigger for my body to keep damaging itself. My youngest has had lots of disparate and seemingly unrelated symptoms that also make sense in the context of Celiac, although he never had classic symptoms. I never had classic symptoms. If it hadn’t been for this experiment I may have never known. And as an Italian-American foodie, I might never have given up my carb-heavy lifestyle without this push. And my youngest inherited those sensibilities from me. He wants to have a cannoli food truck when he grows up. We’ve ordered some gluten-free cannoli shells online.
One article I read said that a child’s system may repair itself 3-6 months after adopting a gluten-free diet. All I know is that after about six weeks of a gluten-free diet my child’s sense of self-esteem and self-worth has improved a ton and a weight that was on my heart has been removed. He talks about his ideas so much more. Homework isn’t the same struggle, neither are chores or new hobbies.
My chapter called “Inheritance” isn’t stalled so much now as it is complicated by every new twist and turn, but somehow I don’t feel the same guilt as I once did. Quite possibly because my youngest isn’t suffering the same way he once was. Quite possibly because I’m not suffering the way I once was. The random nature of how the universe assigns predispositions and chance encounters in diverse environments and how that all comes together to create your life – I cannot take the blame for the whole universe. I can’t take blame for possibly being an asymptomatic Celiac sufferer born to family with a great-lasagna-making Italian grandmother. I can’t take the blame for not knowing I was bitten by a Lyme-carrying tick when I was six.
But I can take credit for every time now I try to make my youngest his favorite foods without gluten, and how I’ll tell him that this isn’t my most polished or logical essay, but I got writing done today and I am proud of myself for that, and all those years of hugs that didn’t solve him feeling horrible but at least let him know that we were there.
My nails have been breaking. I don’t know if they got weaker while I was going through the most intense parts of my treatment for Lyme disease. Both index fingernails broke. My thumbnail has started to show signs of distress, jagged lines where it looks like the layers of nail haven’t been able to hold together. My instinct is to try to hide them.
I’ll be hiding my toenails for a while. The right big one pulled the trick where it grows over itself every six months-a little like a paper jam in a printer, I end up with two layers where there should be one. I bruised the left one when curcumin was thinning my blood too much and so will lose that one soon. Another I have left the nail polish on from last November to chart for myself how slowly it is growing compared to the one next to it. Closed toe shoes will be the norm. They are so far gone that a pedicure can’t save them this spring. But for all of their flaws, my nails have always been strong and tough. I have never had to worry about them being brittle.
Until now. I worry about nail polish and its removal causing more issues. I felt a twinge of vanity that usually escapes me (I rarely have any idea the state of my cuticles and my nails are never an even length). I’ve been watching my nails with curiosity. Does their breaking mean I am doing worse even though I feel better? Am I skimping on vitamins or macronutrients I need? Did I do something to them as they grew from my body or did they get damaged by something I did afterwards? Are they something to hide? Are they something I need to protect from my impulse to cover up?
Image Description: My thumbnail with jagged lines almost parallel to its curves (which have gotten worse since this picture was taken) resting against a red and yellow piece of fabric
On my birthday one of the books I happened to pick up was a National Geographic compilation of some of their best Instagram pictures. I opened to a random page and was immediately struck by a brilliant toucan. The astonishing thing for me that makes photography so spectacular is that there are details that escape our notice when we see stylized versions of the same. A cartoon or painting of a toucan is still gorgeous-but I don’t know that any of them have captured the jagged lines that this toucan’s beak has. I stared and stared because they were the same as my own. I googled what beaks are made of.
Image Description: A large two page spread of a toucan’s beak and head. The red and yellow beak has jagged lines running parallel to its curve.
Keratin.
The same substance our nails are made of.
When I looked at this bird I didn’t see a creature I was worried about, I saw a creature who has lived. And is beautiful. It may be trite, but I am grateful for little synchronicities that remind me that my experiences and imperfections are not unique, and are not embarrassments, and are not alarming problems to always be “fixed”. And that being seen as who I really am connects me to other creatures in ways I had never thought about before.
Image Description: a house with most of it’s siding removed and some grey siding newly installed on the side
I haven’t blogged in a long time. It isn’t for lack of trying-I tried to post something just a couple of weeks ago and a glitch erased it all, pictures, image descriptions, the whole text. Which is probably a good thing as it was kind of pitiful, as in, I was feeling a lot of self-pity. It felt like the universe correcting me, telling me to try again with a little less blah.
Here I am. I started this blog in 2014 as a creative outlet for myself, a place where I could get short essays down and into the world and feel more connected to it. To have a space that was mine to shape and polish and decorate as I wanted, away from the needs of my two kids and the needs of my errant (and in a nod to Roxane Gay, “unruly”) body. I haven’t been able to use this that way for a bit. Oh, there has been self-promotion here and there, but a little essay every other week? Not so much. And that has started to bum me out.
Sure, there are somewhat good reasons for it.
I got warned by ambitious freelancers to never post a piece to your blog for free until you try to sell it. You know, realizing that writing is work and should be appropriately compensated. A great idea in theory-in practice I am absolutely wretched at pitching, and waiting forever to see if a submission has been accepted or if a pitch has landed is bad for my mental health. It was unsustainable for me. And I have discovered that I am really bad at coming up with timely think-pieces that have enough foothold for a broad audience.
Another factor was that I didn’t want to take what little time I had away from actually completing the book I am working on. It’s a work-in-progress, a collection of essays, a memoir about being chronically ill, that is going incredibly slowly at the moment. Part of the problem is that my illnesses, the subject of the book, keep shifting and changing requiring rewrites and reimagining and review. Time is eaten away quickly.
A third factor has been managing my health. I was diagnosed in January with Lyme disease, and I have most likely had it since I was six. The infection just took over when my immune system was under so much stress from two pregnancies and two C-sections and a recession about eight years ago, and I couldn’t cope anymore. So many mysterious and seemingly unrelated systemic problems came from that. Treatment is hard, many hours of the day it feels as if even my individual cells need deep breathes and stillness. Most of the day is spent letting my body rest. I never let it rest before-because I was diagnosed with fibromyalgia which has no known cause and no known cure I had opted to play through the pain, pushing through because my life was going to stagnate if I didn’t. I had social media schedules where I planned on Sunday night what Facebook posts I was going to post that week. I tweeted. I participated in every group I could get into. I got a blog post done every two weeks. I submitted and submitted and submitted. Then I got tired. And more tired. And more tired. And finally had to stop. Because I just couldn’t go anymore. I submitted, finally, to my body’s needs.
In the midst of this I asked myself what was it I wanted out of writing and getting published. I really thought it through because moving the goalposts was wearing me out. With the election of 2016 I wondered if what I wanted most was to be a voice for change, an activist. I asked myself if what I wanted was to be famous, like David Sedaris, or Jenny Lawson (The Bloggess), having fabulous fun book tours and interviews and the like. Did I want respect, to have the approval of the upper echelon in the literary world? Did I want to have a followers who can’t wait to see what I say next?
Then it hit me. All those things are wonderful. Any of those goals fulfilled would be rewarding. When those goals are achieved by other people I feel envious and there is a tendril in my heart of longing-especially on days when illness and treatment make those goals dance further and further away from my grasp. My real goal? I will do anything in my power to keep being allowed to tell what the world looks like from my point of view.
To achieve this goal, there are barely any gatekeepers. I can do that here, any time I want. I don’t have to wait for editors or agents or the Submittable queue. I don’t need to have an MFA to be allowed to do this. Nor do I need to wait the six months after I enter a contest to find out if the judges enjoyed my work. I don’t have to start my own literary magazine. What I want to be able to do, I already can do. It’s rare that that is true, especially in my body. What I really want to do is what I already am capable of doing.
This is my digital home. If I want to write about what Vanellope Von Schweetz means to me I don’t have to wait until I find just the right quirky paying home for that essay. If I want to talk about my son’s broken ankle and how people think he is perpetually miserable about it when he isn’t, I can do that without fighting for a spot in the Washington Post Talent Network, pitching the idea and hoping it doesn’t end up with a misleading title.
I want a place to show the peonies in my garden, and a little girl refusing to play Duck, Duck, Goose just to give the appearance of friendliness. I have that place. I just forget that I already do.
The other day at Ulta I found myself looking at every shade of lipstick, drawn again and again to the reds, which is unusual for me. I almost shelled out 35 bucks for a lip liner and lipstick. Then I realized that although I hadn’t used it since a gala fundraiser in 2015, I had an almost identical red at home. Here’s to using the clothes and the makeup and the utensils and the tools we already have before going out and buying more. Here’s to remembering that if what I want to do is be allowed to tell my stories, I already have a way to do that.
Here’s to putting up siding, painting the hallways and redecorating my digital home.
Image Description: a selfie of me-a white femme with long brown hair. A half-assed selfie with messy hair and no makeup, but a selfie nonetheless.
I have *not* written in a while
Six weeks since I’ve blogged, maybe?
Three of four weeks since I’ve worked on my book?
A couple weeks since I wrote up our Christmas letter, which we still haven’t sent out?
A New Year’s post January 4th?
New Year’s Resolutions (at least for me) have generally been equal measures guilt/self-flagellation for not being better AND an expression of a commitment to more things that make me happy. For the first year since I can remember making resolutions I haven’t felt the guilt of not being enough at a deep fundamental level.
Normally I would have set up a new strict schedule for myself to maybe blog each week with a fully formed essay, go back to my regimented social media blitzes, finish four essays a month, exercise every day, wash my face and dry my hair, finish my book by March, read all the books I have bought but haven’t finished, suddenly be perfect. I had convinced myself that as long as I had a concrete plan I would finally be able to be “successful”. I am awesome at making plans that will be abandoned almost as soon as they are committed to paper. I also would get down on paper fun things that I had denied myself that I would finally get around to doing. I had a little higher success rate with those goals, though they we still based on me being “bad” at being happy.
I didn’t this year, and I didn’t abandon my old models as a conscious decision. I just didn’t. Going back and writing what I might have done other years is making me feel anxious again, like I am late for an appointment-but it’s an appointment where I just yell at myself for all the things I could do better.
I have always thought of myself as someone who does things half-assed. Never doing things totally right, never finishing important things, dropping one good habit as soon as I pick up another needed one. But you know what? I have done a lot of amazing things one ass cheek at a time. I read something this year that turned a particular idea on its head. A man was cursed, it would seem, with only being average at everything he tired. Someone else posited that being average at EVERYTHING one tried is still amazing-the average mountain climber on Everest still climbs the mountain, you audition for a Broadway show and you aren’t the brightest star on the stage but the average Broadway performer is amazing, you try your hand at being a teacher and you still help students even if you aren’t a Golden Apple recipient. We disparage accomplishments and good done in the world in the quest to be the best, we feel like we need to go all in for everything or we fail. It isn’t true. Half an ass is still more than no ass. An absolute ton of good is done a cheek at a time because that is what we can do. I was angry at myself for so long not finishing my book “on time”…ignoring the nearly 50,000 words I did write already. That’s a hell of a lot more than zero.
I feel generally good about myself-I still have bouts of guilt when I really could have or should have done more and didn’t, but I’m finally recognizing that for most of my life I really have done my best-I have put intense effort in to so many parts of life. I’m finally honoring those efforts instead of disparaging them. We tell kids that we just want their best effort, that if they try we will be pleased. Either I’ve been lying to children or I need to really believe, at my core, that that is true. I think long and hard before lying to children for any reason (mysterious holiday gift-bringers cause me a lot of stress) so I need to reconcile this one way or another.
So this is a bit of a half-assed post, but it is still a post. It exists. I took time to articulate something that felt important to record. I am going to recognize that this is the best I can do at this exact moment in time, and I did it, and am happy I did.
Image description: A countertop with a contact case, contact solution, nail scisssors and hormone replacement pills
As a writer who mines her life for stories, it guts me to know that women have to put intensely personal stories of suffering on display every time the government wants to strip away protections we need for our well-being.
It makes me sick that women who may not be ready for anyone to know about the sexual harassment or even assault they endured feel compelled to speak out when Betsy DeVos rolls back protections for rape victims.
That women who have never before publicly shared the pain of losing a much wanted child after twenty weeks gestation have to go into detail about how they and their baby were on the edge of death to explain that banning abortions after twenty weeks is not protecting lives but endangering them.
And now Republicans are stripping away the federal protection that says employers must cover access to birth control pills and women are once again having to share personal stories about what access has meant for them.
I am extremely grateful women have, and I am going to share my story with birth control today to continue that conversation. We are realizing that we have more in common than we knew by breaking open these taboo subjects. We are reaching new understanding and empathy for what women have had to be silent about. But I firmly believe it is a form of violence to create a situation where someone has to bare their souls and all the intimate details of their lives at a time prescribed by someone else. It is a violation to create an atmosphere where people have to beg for their lives publicly, sharing things no one else has really known to get oppressors to see their victims as human. Yet here we are.
I would have told these stories anyways, in my own time, and I feel they may do more good than harm, but I do believe my agency to tell them when I want to has be taken away.
As a teenager I had intensely painful cramps. Every month the first day of my period was wave after wave of rolling pain that left me unable to stand, unable to breathe without pain, unable to live my life. The pain would be so intense that crying was out of the question, as the irregular jarring motion of a sob would tug my body even more painfully. I would eventually vomit from the pain and once I had I would practically pass out and sleep would help erase most of the pain. Ibuprofen and naproxen helped some, but were unable to touch most of the pain. I would miss a day of work or school each time this happened.
One afternoon in high school my period came a day earlier than I had expected. I started to slump over at my desk in pain and asked to go to the bathroom. About twenty minutes later a teacher found me there, lying on the floor, unable to get up the pain was so intense. I was taken out in a wheelchair barely conscious.
Going on birth control pills a few years after that saved me. I still felt tremendous pain each time my period started, but it became bearable, livable. I could go to school, I could go to work. I was finally able to not spend a day each month willing myself to be silent and calm and still when the worst pain of my life washed over me because breathing deeply through it was the only thing that could save me.
I was on a low dose birth control through college and the early years of my marriage when I became pregnant with my first born while still taking them. For a short window of time my body was very fertile, sending out eggs even with the hormones in birth control pills trying to convince my body I was already pregnant and didn’t need any to be sent out. I was surprised, but happily surprised when this happened. I don’t know how I would have felt if, without birth control pills at all, I would most certainly have gotten pregnant in my early rather than late twenties. I would not have been remotely close to ready at a younger age.
After the birth of my first child I went on very strong birth control pills, and was able to prevent pregnancy during a tenuous stretch of time when I was a very new mother with post-partum depression living far away from family. It should be noted that once we decided we were ready to be parents again I got pregnant the very first month I stopped taking birth control pills.
After my second child was born I developed fibromyalgia and for the first few years of his life I was in near constant pain. It would have been a huge burden for all of us to bear if I had gotten pregnant again in the throes of lightening pain that went up and down my arms and legs and back. We would have all suffered tremendously.
I am no longer on birth control pills, but only because I am now going through early perimenopause and take hormone replacement therapy that helps control the pain of fibromyalgia for me.
For nearly twenty years of my life birth control pills were absolutely necessary, both to let me live without the excruciating pain that ran my life like clockwork as a teenager and to allow me to have an intimate relationship with my husband without becoming pregnant with more children than we could plan for.
Birth control pills made my life MINE. It gave me some mastery over my body and my circumstances and was so very, very, important.
And I am beyond angry that they are to become less accessible again, that the agency of women to have control over their own family planning and in some cases the ability TO LIVE LIFE IN LESS PAIN will be put at a price many women can’t afford to pay.
And I am beyond angry that the agency women have to control the narrative of what birth control pills have done for women has now been compromised.
Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier
Hi Everyone!
I have an essay/article up at The Refresh called Traveling While Chronically Ill (clicking on the title will take you there). This is a reworked blog post from last summer about my experiences planning carefully before vacations. This version has some more information/tips that I find helpful.
Kristin DeMarco Wagner 