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!
I am very proud to be a voice in the Disability March II, a virtual movement of solidarity with the Women’s Marches this January 20 and 21. If you are also disabled (my chronic illness people who may be invisibly disabled, you know you count too, right?) please consider joining in by sharing your story as well. My entry is called Enough (a click on the title will take you to the link), and the more people we can gather the more we show the world that we exist and we won’t be silenced. Last year we had more than 3,000 participants by the end of January-I think we can get even more. Making disability visible.
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.
We are currently in the middle of renovations on our new house and aren’t living there yet. As of this writing this is what my kitchen looks like.
Countertops are covered in sawdust, there are trim pieces and a table saw in my living room and bag chairs in the family room. We need to set up Wi-Fi and cable, and do not have any toilets upstairs. Our kitchen table, sofa and entertainment center are still in a storage unit.
We are less than a week from Thanksgiving and my ridiculousness has insisted that I still want to host Thanksgiving. It’s been our thing for years and years. Since graduating from college my husband and I have hosted a Thanksgiving dinner every year. We made pasta and turkey for just the two of us in Tennessee, and the next year there my brother-in-law came and visited. We’ve had my mother- and father-in-law over in Texas when our oldest was just three weeks old (though I did very little cooking that year). The ten years we’ve been back in Illinois we have added in my brothers and significant others, my parents, friends that became family and aunts and uncles and cousins. Like, it’s a whole thing. I have a collection of recipes and timetables and serving platters and autumn leaf-colored plates and a stuffed turkey and gold and brown tablecloths and a Tiffany-style pumpkin lamp. Like, it is on. This is happening.
My mom has teased me that this really isn’t necessary. My husband stared at me with wide eyes this morning, one of the few times in our twenty-one years together that he has admitted we probably have bitten off more than we can chew. My youngest was sad that every year we decorate a cardboard box that we then fill for the food pantry and that we might not get to this year-I told him we have a million moving boxes and I just grabbed some construction paper from Target. I’ve got Hawaiian rolls in my pantry, a pound and a half a pecans in the freezer, cranberries in the fridge.
My deviled egg plate, immersion blender and portable cupcake holder are out of storage. The big ass square stuffing bowl is ready.
This may be the most ill-advised Thanksgiving we have ever held. But, this is one of the ways I show my gratitude for some of the people I love, and who have been there through this whirlwind process.
I wrote this several years ago. Every winter day when I drove my children to school after Sandy Hook, I felt my chest tighten wondering if this would be the last time I saw them. I wouldn’t turn and walk away until I saw them safely in the building, knowing I would never live past the regret of not looking after them until the last possible second if they should die that day. I parked on a different street, walked a different route after that Friday in December, anxiety and magical thinking working together to make me believe that I was somehow protecting them by avoiding the things I did that day, the day small children were murdered in their school. A few months later the incident described below happened.
I think a few differences have happened over the last few years that make this story a time capsule of fear and hope that don’t carry over to today.
When this story took place, though I was scared, I felt that many good people were trying to figure out how to prevent mass shootings from happening again. I felt confident that every other mother and father in the country was feeling the weight on their hearts as I was. I was wrong. There were some very evil people who value money over children’s lives who have been operating covertly assuring that nothing-not even prior domestic abuse charges-got in the way of gun manufacturers selling more guns. Concealed carry became the norm in even blue states like Illinois. Open carry became the norm in red states like Texas. There is little to prevent any American from gathering as much ammunition and as many guns as a terrorist organization might procure. The mass shootings got even worse.
When this story took place I thought that we were starting to dismantle toxic masculinity. I thought we were turning a corner on how we raised our boys into men, that we were starting to assure them both that they were allowed to feel pain and that they were not allowed to use violence on their fellow human beings-that it wasn’t weakness to have feelings and it wasn’t a show of strength to abuse those within their world. Maybe this is a violent death rattle that will destroy so much more before these toxic ideas finally expire. I was a teacher. I had a firm belief that we had power to help change the lives of young men who could have turned to violence and enacted interventions to stop them. I still believe we can, but I do not believe there are enough people who want to find out how anymore. The young boys we had a chance of changing are now violent young men with more capacity to kill that we did nothing to dissuade.
When this story took place, I thought my fear could be contained by the idea of a school lockdown, that if I pinned my fears to this one location in space and time it wouldn’t infect the rest of my world. That the healthy white blood cells I had would route my panic and grief if I could stop it from spreading. Shootings have happened everywhere and the infection has spread. My white blood cells have given up; the infection has spread so far that I have forgotten what it was like to be fighting for my health and almost winning.
This story is both tinged with more fear than I now feel, because resignation has subsumed my alarm, and more hope than I now feel, because change I thought was coming was never on its way at all.
I never thought I would wish to be able to have the feelings in this story again. Once I get something so ugly on paper I hope to have flung the feelings that inspired it far away from my body. I now wish they still felt like they were a part of me.
There are red and white lights flashing as I pull into the parking lot, but no sirens. I go to stand in the cold with the other parents, waiting for our preschoolers to be released. They are not. A police car has come to silently join the fire truck and ambulance that are already here, and we realize that the children are in lockdown. This isn’t a drill.
“I knew they shouldn’t have put the little ones in a junior high.” The first parent among us starts to express our fears. I nod, almost imperceptibly, as I always thought it was strange to put three to five-year-olds in the same building as teenagers. It was a temporary solution to a space shortage, but an odd one. One that had already scared us, but we couldn’t protest as we were lucky to be getting services at all with so many budget cuts.
We sit stand quietly, tensed and staring at the door that won’t open.
“It’s been five minutes.”
I try to steady my breathing and hope against hell that the children don’t suspect that anything unusual is happening. That they are huddled in their coats and mittens and backpacks in a corner, following their teacher’s directions to stay silent and still. I am able to calm myself for a moment knowing that they always listen to her, even though they are squirmy tiny people.
“It’s been ten.”
We shift lightly back and forth on cold feet, trying to warm ourselves. Or maybe we are getting ready to spring. There are about forty of us who are realizing what it means to be the ones locked out: we can’t do anything to protect them. I fantasize about scooping up my thirty-five pound child and running, though I know that isn’t what you are supposed to do. And where could I possibly go to get far enough away? We are all listening, hoping that nothing unusual punctuates the silence inside the school.
The woman who first spoke up has a little boy who, at the end of each school day, runs straight for her laughing, yelling “Mommy!” She catches him up and swings him high into the air and lets him fall into her arms. Every day. She speaks again, “He had a twin sister. She had a hole in her heart and she died, as a baby.” More quietly she adds, “Nothing else can happen to him. To us.”
I finally use my words to dampen the panic in my throat. I say something about how it will be all right. I say something about how I know about these things, because I was a teacher. I was a teacher who handled these hormonal, dangerous teenagers for a long time. I knew they could be good and kind, and lonely and angry and confused. I tell them about how we handled a six-foot tall boy who brought a very large knife to school. Without injury. Without harm. And that the boy eventually came back and was welcomed and never hurt anyone. I say something about protocol, and drills, and empathy, and vigilance, and dedication. And redemption.
“It’s been fifteen minutes.”
I want to shatter the glass of the doors that won’t open and run to the room where I know my youngest is and be there with him. In case anything happens, it won’t happen without me. It can’t. I want to whisk him away from everyone else in the world forever. I want to put myself between him and everything. Where no one can get to him except through me, and he will not get to anyone else without my intervention.
Doors far from us open, and one slim boy is escorted out by four police officers. Silently, they box him in. He is in handcuffs, but his arms are not held to keep him from running away. He won’t. His face is the same as my six-foot tall boy’s.
The doors in front of us swing open and my preschooler is at my side. I grab his face in my hands to see that he is smiling, not worried. I hoist his thirty-five pounds against my hip, and realize how hard it would have been to run carrying him. And how impossible it would have been to know that I was locked away from him, and not even given the chance to try.
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.
A lot of my life I haven’t known if feelings I feel, or thoughts I have, are common. I’ll ask myself, “Do other people get as upset about X, Y, or Z as I do?” or “Did no one else like this thing I liked?” or “Did anyone else see what I just saw?” So I am going to throw this question I had of myself this morning out to the world…
Do other people have a love-hate relationship with routine, or is it just me?
Depending on what stage of life you met me, you probably would have met someone who looks like she is laid back, a go-with-the-flow sort of character who appreciates almost everything and will gladly breeze along through life letting other people, or the needs and whims of the day, set the agenda. This version of me seems easy-going and often I can enter into the flow of what is happening around me like entering a gentle stream, letting myself be carried peacefully here or there.
And the rest of the time I am decidedly NOT nearly as amendable. I’ve yelled at my husband because he hasn’t given me his proposed agenda for the weekend. I have stuck stringently to toddlers’ nap and bedtime schedules for fear they would detonate. When medical issues are involved I arrive to appointments early, plan out every bite, make five year (ok five month) plans for exercise in excruciating detail. I once decided I would be the sort of person who kept her kitchen spotless and for a few days I became a compulsive monster-and I don’t use either the word compulsive or monster lightly. It was as if a switch was flipped and I suddenly absolutely COULD NOT handle having my life controlled by someone flighty and easy-going, like the idea of order and routine was suddenly EVERYTHING. I would think that perhaps this is my reaction to stress, that making order out of chaos is a somewhat natural reaction. Except that the version of me who is a slave to routine is decidedly more stressed out on a continuous basis than the relaxed version of myself.
I’ve been thinking about this dichotomy in myself for a while now, every time I feel ashamed that I’ve lost a paper a kid needed for school I vow to do better. Every time I set up a new routine that I have trouble violating I feel ashamed that I have lost my ability to be flexible. It isn’t that I’m fastidious with work but loosey goosey with the kids, or that I’m lax with housework but strict with homework-it isn’t broken down by category consistently that way. The arenas of life I am strict about are, ironically, quite variable. Sometimes I could double as a flower child following Phish, and sometimes I am Sheldon from The Big Bang Theory insistent that we eat pancakes only on Tuesday and that I have a spot.
Right now, I have a spot.
I’ve been coming to our library every day after I drop the boys off at school to write. I go to the downstairs bathroom. I come upstairs and stake out my spot, which sits between the books about the Hoover Dam on my left and a Japanese-language version of The Hunger Games on my right. I will stay up until any time before 11:00 AM, but never past 11:00 AM then leave for lunch. I had only done this for four workdays before it became a necessity.
I tried to mix it up.
My illnesses are quite variable, and with a recent heatwave my blood sugar has been dipping too often. This morning I stopped at Panera to get an egg white sandwich before writing (protein is good for keeping blood sugar steady, unlike the candy I would rather be chugging). I brought my laptop in with me, thinking that I could get to work there for a change of pace. I ate and sat and opened up Facebook and Twitter and all my social media and could not get myself to open that damn laptop. After ten minutes I gave up, and left for “the office” cursing myself for wasting time because now I would be late for “work”.
I literally could not violate my new routine without it causing me psychological distress. And it is distressing. Once I latch onto a compulsion or a way of doing things and have to change it, it is absolutely distressing. I am pissed that my oldest has two clubs that, for completely understandable reasons, have different dates than what I already wrote down in my planner. I do not like it that when my husband drives our car he parks in a different area of the parking lot than I would have. I feel strange not seeing a trailer or reading an article for a movie before I go see it. Sometimes I can be very rigid.
But, I also adored my high school students when they would come up with an unusual idea I had never thought of in class. I love when strangers sing unexpectedly in public. I love new restaurants and dishes and seeing where a conversation might meander. Sometimes I can be very flexible.
I wonder if my feelings about routines stem from the idea that I may not be neurotypical. Last April, I began to realize I might be on the Autism Spectrum. I “came out” to friends on Facebook this way-
“I’m running high on some post-workout endorphins, so I’m going to post this right now before I chicken out. My vague-post from last week, where I was happy? I finally realized/accepted something about myself and I felt immediately less alone and a lot freer.
I am not neurotypical.
I never have been.
In fact, the more I read and understand, I am pretty sure I am on the autism spectrum, possibly with Aspergers.
While working on an essay, I remembered just how much over my life I closely studied human behavior and behavioral patterns and mimicked what I figured out was “normal” for other people. From a very young age, I studied everyone and everything and hid.
Places where I felt comfortable, I let myself be “weird” and sometimes it worked out okay, sometimes it didn’t.
(And … I just started listing everything I just figured out about myself. You don’t need to know all that, so I just deleted it.)
Anyhow. I feel good.
I feel new respect for myself, realizing how tough I had to be. I was in the deep end of a pool, treading water for years, not knowing that a lot of other people looked calm on the surface because their feet actually reached the bottom.
I feel relief from the pressure to hide the weird parts of myself so often. Or trying too hard to push myself to actually *not* be weird. It’s never going to happen. I will always be weird. There won’t be a magic time when I suddenly won’t be different. I’ll still work on being socially appropriate, better at relationships, etc. But I recognize that for me it takes more work.
I feel less alone. The more I read the more I see myself in the narratives of other adult women who are not neurotypical. There are people out there that know what this feels like.
I have a new batch of coping skills for the parts of life that are hard. I struggle with things like anxiety, procedural compulsions, intense sudden special interests, inattention to things that don’t interest me, some rigidity, meltdowns and the inability to not notice a million details-that other people have found workarounds for.
So yeah. That’s what’s up.
And I feel a lot more free than I have in a long time.
For a lot of autistic people, routine is vitally important. But rigidity in sticking to a routine when it inconveniences other people very much goes against what it means to be a woman in terms of agreeableness. Knowing that I would be expected to either violate my routines or let them be violated, or be thought of as unfriendly and unhelpful, I was stuck between a rock and a hard place.
I wonder if I studiously cultivated a life that was almost free from routine so I wouldn’t feel the distress of violating it, and would not feel the distress of violating what it means to be “feminine”. I think that perhaps I took enormous effort and discipline to be agreeable and easy when my mind wanted me to be rigid and uncompromising. Which is fairly counter-intuitive.
Routines, and the way I handle them, can feel like ensnarement. But, they can also be useful tools. Maybe, if I am aware of my tendency to get rigid with routines, I can harness some routines without them taking over my life and causing me distress. I’m not sure I can, and past evidence hasn’t given me the idea that it is something that comes easily to me. I want to be responsible and orderly when it helps me and my family, but still be loose and open to change when that is needed. I don’t want to ignore the part of me that thrives in routines anymore, but I don’t want to lose the person I am when I am able to let it go.
Maybe I need the framework to be orderly, but what I do within it to be open. Like right now-I am writing in my spot and I am rushing to finish this blog post as it is 10:51 and I have to be done by 11:00. But…I was supposed to be working on my book when the compulsion to sort this out became stronger than my compulsion to finish the chapter. So some routine, but freedom within the routine.
Like this blog. I had, in the past, expectations for myself that I would post something each week, or every other week, but the content was completely open to my whims and compulsions. Structure and fluidity.
I guess my take away question, as it is now 11:00…
Anyone elsehave the same kind of love-hate relationship with routine?