Shared Trouble

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. 

Shared Trouble
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.

April Update

My Existence
A selfie on my birthday. Messy long brown hair. Tortiseshell Glasses. Blue t-shirt that says “My existence is resistance”

I took a little writing break for about a month to take care of…lots of things. I know I haven’t written here for a bit. It’s taken me until today to change the header for this website from winter to spring! Which, to be fair, keeps bouncing back and forth. The week before Easter we had six inches of snow. On Easter it was 70 degrees out. My birthday this last Thursday was gorgeous and sunny, and then five inches of snow on Saturday collapsed our outdoor canopy. Bolts sheared off, metal twisted. It is a pile a scrap metal now. The weather is erratic and doesn’t help anyone feel more stable, that’s for sure.

Anyhow…Since I wrote here last I have been writing a bunch. It’s just in forms I can’t share yet. I 100% finished the manuscript for my essay collection in January/February. Then I completely restructured its order and added in a few essays that I had planned to include in the book from the very beginning, but somehow had forgotten to write. At the same time I was polishing pitches for #PitMad and #DVpit on Twitter, drafting query letters, finishing a full book proposal, and researching agents. By mid-March I paused on writing to catch up on every other non-writing thing that needed to happen.

In that month my dad had an unexpected hospital stay and surgery, my youngest turned ten, my oldest won a basketball tournament, I turned forty, my husband got to be home for a full week without traveling for the first time this calendar year. We started soccer and finished band and had a spring break and hosted a birthday party and went downtown in a snowstorm and caught my husband up on Avengers so that we can see Endgame next week. There was a science fair and field trip in there, too. There was Babesia treatment that I postponed too long and I started to feel bad again.

A lot can happen in a month. A random goofy tweet went mildly viral, and a more serious thread about disbelieving pain patients got noticed. I printed up pictures for our family albums, but didn’t get them into albums. Downloaded pictures off my phone, but didn’t get the phone replaced yet. Cleaned my office, but didn’t donate the box of donations that sits behind my desk chair. Meant to exercise more, but couldn’t. Watched Beyonce’s Homecoming. Read the Amulet graphic novel series with my kids. Cooked more than I had been, but only 1/10th of what I wanted to.

Life is busy and full and chaotic and I thought, somehow, that by doing a bit less in one area, that would be enough to patch up all the holes in all the other areas of life.

It is not.

A month of doing a little less in one area didn’t leave me refreshed, and it didn’t magically give me time and energy to figure out how to manage everything better. It just made me realize that I have been running at full speed for so long that I accepted it as normal and what should be happening. It also made me realize that writing was one of the few things that gave me an emotional and creative outlet and a place to process my thoughts-it isn’t enough, but without it living my life is harder. So, kind of like exercise, it takes times and energy that seems to be in short supply but I have to factor it back into a regular routine.

So back to it. Back to writing (some here, some elsewhere) and back to exercise.

I’m gonna post this, eat, exercise, stare into space trying to remember the to-do list I keep forgetting and try to keep moving.

How I Spent 2018

Sideways Teal
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.

Happy 2019 Everyone

 

Love,

Kristin

Happy Holidays 2018

I want to start with a brief apology. I haven’t been here on my website blogging in a real way for a while. It’s become a place where I shoot off a brief update every one or two months, and maybe you’re curious about what’s going on with me, but this isn’t maybe what you signed up for. I honestly am hoping that with the new year I’ll have a bit more time for the sorts of posts I want to do: mini-essays. I’m not there quite yet. Let me quickly explain why.

My essay collection/memoir about living with chronic illnesses is nearly complete! I have a few more chapters that need to be begun from scratch, and about ten that need minor revisions, and one that needs a complete overhaul. But, I will most likely be 100% complete (just a touch over 80,000 words) before Christmas. The next step in the new year will be sending it to beta readers (people who aren’t close to the manuscript who give you notes), querying agents (an agent is really important for traditional publishing) and completing a book proposal (some agents request book proposals-something you usually write before you write a non-fiction book outlining what it will be about). My daily writing time will be mostly spreadsheets and paperwork at that point, as you set your hook and see if you get a bite. Writing is a long process, and from what I understand of it, publishing is a long process.

This weekend I used some of Greg’s hotel points to stay in a room in town for 24 hours, writing as much as I could in that time-frame. In all I wrote 3,112 new words (over four new essays), revised seven essay/chapters successfully and revised one unsuccessfully. Not bad. I did have to take quite a few breaks before I felt sick. Luckily the lobby was nice and had excellent people watching.

Fancy hotel
Image Description: My feet, in black heeled boots, propped up on a cushion in front of a fire with a shiny steel hood.

There were two galas happening at the hotel (which was fancier than I expected). One was a black tie/sequined evening gown/fur coat affair. The other was for Gigi’s Playhouse, a support organization for children and adults with Down’s Syndrome. I met teachers who work for the org in jeans and t-shirts in the elevator, wine glasses in hand, heading up to their rooms to change into the dresses they bought for the night. The teachers were my people-a lot less pretentious than the tuxedos and a lot more fun. There was also some sort of pyramid scheme sounding seminar happening that weekend-and I steered clear of that altogether.

And with all the normal bric-a-brac of life-like colds and lessons and clubs and groceries-it is of course the holidays again. Otherwise known as the time of year I fall in love with food writing again. I devoured the latest Bon Appetit and want so much to spend all day tracking down recipes and watching Food Network and writing about food traditions and finding a fun new recipe to try out. Last year it was the NY Times cranberry curd tart (which a good friend of mine had made, unbeknownst to me, as well) which was lovely, but time-consuming, and the hazelnut crust made my allergies flare. We host Thanksgiving (I think I mention that every year-I swear one day when I can’t host I won’t know what to do with myself late November) and this year we’re hosting Greg’s family for Christmas day. There is shopping and cooking and concerts and a whole bunch of other stuff to accomplish.

Bon Appetit
Image Description: The cover of the Thanksgiving Bon Appetit Magazine, with a roasted turkey on the front
Cranberry Curd
Image Description: A sliver of an orange-leafed fall tree and a close-up of a bright pink cranberry curd tart

Then there is my health. So much steadier than other years, however I still am having to tweak medications every week. The ENTIRE time I was writing last weekend, I had a skull-crushing headache. My med dosages were off. Anxiety about not being “productive enough” seemed to have knotted my back, and kept me awake too late and then the next morning too early. It was lovely to have the means to do this (the first overnight trip away from the kids in five years) and to have uninterrupted time-but I was still sick the entire time I was trying to yank a ton of emotional work out of my body. I am sick less often and in more manageable ways than I have been in eight years, but I am still not “healthy”. I have to remind myself of that when I beat myself up over, say, not getting good blog posts out in a while.

But here is an update. I haven’t fallen off the edge of the world, I still exist (though the social media algorithms have abandoned me for not posting as regularly as I used to) and I am keeping busy with things that I hopefully will get to share with you. And I hope to get back to my mini-essays that don’t fit neatly into a book about illness, on whatever I feel like writing about!

 

Happy Holidays, everyone!

Kristin

Gluten, Gluten Everywhere, but Not a Crumb to Eat

GF
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.

Essay at Rooted in Rights

 

Garden Lites
Image Description: A box of Garden Lites Chocolate Muffins that are dairy-free and gluten-free

 

Hi Everyone!

I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!

Hope you are all having a great Mother’s Day weekend!

Love,

Kristin

 

My Digital Home

Digital House
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.

New Essay at Full Grown People- “Spectator”

Rectangle of outside
                                          The Rectangle                                              Image description: A picture window that shows a wintery outside world

 

Hi Everyone!

It’s been a bit since I posted, huh? I am really happy to be able to, to let you know I have a new essay up at Full Grown People today called Spectator. It is about living life watching instead of participating, because often that is what I am able to do. It is also about parent participation night and third grade basketball. It’ll all make sense, I promise!

Love,

Kristin

 

N Basketball
            The Basketballer as a Third Grader                  Image Description: A smiling brown haired boy in an orange Illini jersey sitting at a table

BCP

BCP
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.

But here is my story anyways.

 

Moving

We decided last spring that it was time to start looking for a new house.

Scratch that “we”. My husband has been ready for a long time. Every other time we’ve moved -from Illinois, to Tennessee, to Texas, to Illinois- we had to do it quickly. A transfer with a few weeks notice, a three day hunt for a new place and about a month to say goodbye and hello and forward all our mail and set up a new phone number. Each time we knew that we would be staying just a few years, that the company would pay for the move and buy our old house if we needed them to.

Our last move was done this way (we saw about twenty different houses over two days with headcolds) when we moved back to Illinois with our one year old baby. In fact, his first birthday was when we closed on it. It was the absolute best option at the time, even with a fence that blocked off any and all access to the back yard. It felt airy and roomy. Light spilled in the way it had in our house in Texas, which was not an easy feat as the money we paid near Houston stretched a lot further than it did in the Chicago suburbs, making windows and space a bit of a luxury. We had three bedrooms which worked at the time-one baby+one home office+one master suite. It gave my husband space to renovate without being a complete renovation. We knocked down the fence and had this view-

Outside View
Image Description: a patio furniture set with a green yard and hedges in the distance

-for the next ten years. It was my favorite.

Then it got small for us. The house sat on a slab, and we never had a basement or a crawlspace. The shed that had been on the property had been…odd. It had blocked our view and had been illegally wired with electricity and air conditioning for the previous owners’ pet dogs, and it really needed to come down. We had little storage to begin with and we added another kid. Both boys fit in one room when they were preschoolers and kindergartners, but as they got bigger, as my oldest got to be almost as tall as me and his clothes literally busted out of the changing table we had converted into a dresser, the whole place felt tighter and tighter. My youngest plays piano and my aunt’s neighbor couldn’t find someone to buy his upright but wanted it to have a good home. We had to turn down a free piano because all the space we had was already spoken for.

I had resisted the idea that we needed somewhere new for a about six years of the last ten. I argued that we were accumulating things too thoughtlessly and discretion would buy us more space. I argued that I never wanted my kids to become spoiled, that it was important to me that they be grateful for what they already had. I argued that a bigger house just meant more to clean, or that it meant I had to pretend to be fancier than I was, or that we would be tempting fate and might drown in debt that I couldn’t help pay down because I was sick.

Because I was sick.

That was the real reason. The house had become my world for the last seven or so years that my health had started to decline. Whenever I was too sick to move, I could still see the backyard through our sliding glass door. The house was always there for me when venturing in the outside world was not possible, when I had been in too much pain to risk going out in the cold, when I was exhausted to the point of vomiting after being up half the night with babies or low blood sugar, when new medications made me too dizzy to drive-home was there for me. When my husband traveled for work and the boys were in bed and insomnia had a hold on me, the house held me and helped me feel safe. I didn’t want to lose that. But it had also become a cage, a place I had become afraid of leaving because I didn’t trust in my own ability to navigate the world while sick. Here I could hide how bad I felt, or nurse myself back to health. It was refuge and prison cell after so many years sick within its walls.

The house had also become a metaphor for how I felt about my broken body. I knew its limitations as intimately as I knew my own and every time my husband would complain that the roofline was not particularly attractive, that the electricity was tricky, that the rooms were small or the spaces limited I would feel stung. I felt embarrassed and angry for the house that he could only see its shortcomings and not the wonderful things it already held. I felt defensive, like I was fighting for my own worth, fighting against being discarded myself. I fought for him to appreciate the love and care he had put into decorating it, the creativity it held, the memories the boys made there, the memories I made as a young mother that no one else will remember because they were too young. I fought for the yard and the view and the windows and the landscaping we planted together. I fought for it like I was fighting to keep myself important.

I realized over time that yes, the house was a good house that would serve another family well; that I wasn’t being replaced with something newer, fancier or less trouble; that I had let myself become confined by its walls and that there wasn’t anymore room for me to grow or breathe or become something bigger than I had been for the last few years. It was time to look for a new place.

A place with room for each of us to be more, for my husband who was feeling stifled by the lack of new projects to be creative with our home again, room for the boys to be independent and to move without bumping into walls with their bigger bodies, room for hobbies and interests and collections. Room and space to dance and cook and sing. Room to hold onto things that are important to us. Room to expand beyond where we were. Room to feel free instead of constrained.

I finally knew it was time, but still had to be dragged through the process of it all kicking and screaming, afraid of what I was losing, not really able to visualize what I would gain. When you go for years losing, voluntarily letting go of something that had been so important to you is incredibly hard. Well, it was for me, and I assume it is for other people.

Moving Boxes
Image Description: Moving boxes and miscellaneous stuff stacked high in a garage.

 

This time, for the first time in our lives, we had time to really look. We had time to decide. We looked at houses from the beginning of May all the way through August and decided we wouldn’t settle for something that was close enough, as we had had to before. We finally found a place, after looking at every listed house in town for an entire summer, just on the other side of the pond where we had been living. After fretting about the boys moving schools, it is looking like they won’t have to. After grieving over missing our neighbors, they are literally just a five minute walk away. We haven’t closed on the house yet, but I am cheered that we didn’t even lose the view I came to love so much-we’ll just be seeing it from a different angle.

But we will have more space to grow.

It pains me to say it, but my husband was right. The process was hard and painful in a lot of ways-our boys have never (really) lived anywhere else and were doubtful they would survive the move, I had to confront the ways I had let being sick limit me, we had to ask all our family to help move most of our things into storage since we were still looking for the right place as our place sold more quickly than we thought it would. But it has been necessary. And worth all the trouble.