"There are years that ask questions, and years that answer." Zora Neale Hurston
In 2013 I was diagnosed with Fibromyalgia. I had been dealing with mysterious symptoms for years, and putting a name to my chronic illness has meant being able to understand how it has changed my life.
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!
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.
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!
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.
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-
-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.
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.
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.
Today I have an essay up at The Manifest-Station called Bedtime (you can click on the title to link to the essay).
This is a story of two bedtimes, one recent and one more than six years ago. Part of the story is about the painful limitations I encountered being a parent with chronic illnesses. Part of the story is about how miraculous getting to be a parent at all feels.
This is a chapter in the book I am working on called Quote/Unquote “Healthy”. I announced here last summer that I hoped to have it done before the 2017-2018 school year. Well, illness gets in the way sometimes (and adds more chapters I need to write about!) but I hope to have the full manuscript done by November.
The Manifest-Station has given this story a wonderful home, and a gorgeous accompanying picture that is beautiful…and makes me smile as it doesn’t look much like the room this actually took place in. So, for you all I included the real thing, for authenticity’s sake.