Locked Down/Locked Out

Locked Down
Image Description: A school as seen from a car in the school’s parking lot, children and teachers at the front door by the entrance.

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.

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.

 

My Spot

Written Friday September 22, 2017

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.

My Spot
Image Description: a laptop open on a table at a library, shelves of books on either side.

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…

My spot at 11
Image Description: A closed laptop on a library table, bookshelves on either side. A clock in the distance reads 10:55

Anyone else have the same kind of love-hate relationship with routine?

Or is it just me?

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.

Essay at The Refresh

glacier-tour
Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier

Hi Everyone!

I have an essay/article up at The Refresh called Traveling While Chronically Ill (clicking on the title will take you there). This is a reworked blog post from last summer about my experiences planning carefully before vacations. This version has some more information/tips that I find helpful.

Hope you’re all doing well!

Love,

Kristin

Essay at The Manifest-Station

Boys room
Image Description: A child’s bedroom with two beds and one wall that is mostly blue with paintings of planets, stars and a close-up of the moon on it.

Hi everyone!

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.

I hope you are able to check it out.

Love,

Kristin

When Those Bastards Tried to Repeal the Affordable Care Act in May, 2017

author pic Heidi
Image Description: me looking at the camera, my long hair down, wearing my hand-made, blue “I am a pre-existing condition” t-shirt

Hello everyone,

This weekend is an interesting (but not bad at all) one for me.

In the midst of celebrating Mother’s Day, I am attending a Die-In to protest the AHCA at a local representative’s office (Not mine, my representative is an outstanding advocate for us-the representative for the  neighboring suburbs is not).

I announced I would probably leave the house by 10:15 am to which my kids asked, “Where are you going?”

Without looking up from his phone my husband deadpanned, “To die.”

Luckily my kids are, by the ages of eight and ten, used to being teased by my husband and always ask me, “No really, what’s going on?”

I briefly explained that a lot of people voted against my ability to have affordable health care in the future, that people will die without treatment and so we were symbolically going to pretend to be dead for a few minutes in front of a congressman’s office, to demonstrate what he voted for.

Along those lines, and in a less brief format, today also I have an essay up. It details a little bit of my struggles with chronic illness, my reaction to the recent vote and what it will mean for my family if it becomes law.

So, in a little bit I’m off to pretend to be a corpse. Then I’m going to visit with my parents and my kids in a park filled with lilac bushes, give my mom her customized #Iamapreexistingcondition t-shirt (I haven’t made my mom something with markers in a looooong time, I felt like a kid again) and enjoy both having a wonderful mother and being a mom to some pretty awesome kids.

Who are probably going to play Minecraft while I lie in a ditch somewhere.

Take care!

Kristin

The following essay first appeared on the website, Progressives of Kane County. Hence the somewhat longer introduction to who I am…

I want to briefly introduce myself. My name is Kristin Wagner. I was born and raised in the Chicago suburbs, and after living in Tennessee and Texas returned back home to raise my two boys. I am a wife and mother, a former high school English teacher and currently a writer. I volunteer at our school and take my kids to the pool in the summer and sit outside of piano lessons making up grocery lists.

I am also a chronically ill person. Though I am somewhat shy about using the term, I do identify as disabled. I have Hashimoto’s Thyroidistis, fibromyalgia, chronic urticaria with dermatographism, a dairy sensitivity, hypoglycemia, allergies, premature ovarian failure, and sometimes depression. I walk a tightrope each day to manage the symptoms of each illness without causing more problems with another illness.

The process of getting to a place, a decade after I began being actively sick, to where I can get by involved neurologists, gastroenterologists, endocrinologists, rheumatologists, allergists, gynecologists. It involved trips to the ER with unexplained pain, ultrasounds, x-rays, an MRI, an EEG, an EKG, a colonoscopy, steroid shots, and blood tests measuring almost anything that can be measured in a blood sample.

I am forever grateful that when I had horrible symptoms that could have pointed to cancer (ovarian and colon) that my doctors never hesitated for a moment to check. Those scans were negative. That when my blood sugar kept dropping for no known reason, my doctors tested me for diabetes and insulin-producing tumors. Those tests were negative. That when I couldn’t feel temperature we immediately checked for Multiple Sclerosis. Again negative. When I had such bad chest pain that my doctor thought I may have been having a heart attack, I was able to get myself checked out without worry that I couldn’t afford it.

I have been lucky. I have been in huge amounts of pain, but I am lucky. The entire time I have been ill we have had insurance. I have been afraid of what my illnesses have cost us in co-pays and premiums and prescriptions, but I have never gone without care. I have never had to ignore a pain that could be cancer or a degenerative disease because I couldn’t go to a doctor. I have never had to go without medicine I need because it was prohibitively expensive. I have been able to track down what is really going on when I feel too sick to move. And because I have been able to take care of my health, I can live my life as well as I am able knowing I will never really be “healthy”.

Thursday, May 4th 2017, the day that the majority of the Republican members of the House of Representatives voted for the AHCA, was devastating. All I could do was stare at my phone as the votes rolled in, stunned into silence that people who should be my voice, who should care about my life, were so happily cutting it in half. I cried because for the very first time in my life I was looking into the faces of men who rejoiced in the idea of me dying. I suppose I’m lucky it took me so long in life before I had that feeling wash over me. That day 217 members of my government decided that my life, my happiness, my ability to be as good of a mother and person as I could be, was too expensive. That my life wasn’t worth the money it takes to keep me going.

They voted to eliminate protections for people with pre-existing conditions. If my husband lost his job and we couldn’t afford insurance for a little over two months, every single illness I have on record might be used against us as excuses to raise our premiums to exorbitant levels, effectively pricing us out of insurance. The birth of my two sons, by C-section each time, might even be used against us. My illnesses and necessary surgeries could conceivably bankrupt us.

They voted to add annual and lifetime caps on coverage, which were both banned by the ACA. At thirty-eight, I very well may have used up what I was “allowed” to use up, potentially leaving me without continuing care for the illnesses I already have and any without any ability to deal with other diseases. Most likely more will come up. Having one autoimmune disease (for me, Hashimoto’s Thyroiditis) often means others come along (like Premature Ovarian Failure) and more might pop up later (like Rheumatoid Arthritis, or Lupus). People will die from lack of care, from lack of preventative measures, from lack of diagnostic tests.

I am not being hyperbolic. The 217 Members of Congress who voted for the AHCA voted to kill constituents, to shorten their lives, because keeping people alive and healthy is expensive. There are definitely people in the world who subscribe to the idea of eugenics, who have no problem letting disabled and ill people die because they, according to this horrific philosophy, don’t contribute economically as much as totally healthy citizens do. May 4th the Republican Party voted, gleefully, to cull the sick and the poor out of our country for the financial gain of the already wealthy and the insurance companies.

If this unconscionable bill passes the Senate, I do not know what I will do to try to stay physically healthy. I will most likely try to get by on the bare minimum of care, so that I don’t exceed my annual or lifetime caps, assuming that if I am going to live as long as I can more diseases will find me. My quality of life will be diminished as I spend more time in pain or exhaustion than I needed to, because treatment that exists will no longer be accessible. We will be abundantly cautious with our money, taking no risks. We’ll have my husband stay with his progressive company, saving as much as we can to forestall an inevitable bankruptcy. Maybe I will hide what I’ve been through, leaving no paper trail to suggest I am less healthy than I appear on the outside. And yet, I am comparatively lucky. We still have money to save, my husband still has a job at a good company, the illnesses I already have are (for the most part) not degenerative. There are people who will make it only a few years, a few months, a few days, without continuous care.

Even if this bill dies as soon as it passes through the Senate doors, I do know what I will do to stay more psychologically healthy. I will do whatever my sick body will let me do to rid our government of every single Representative who, by voting yes on the AHCA that day, demonstrated the lack of human decency we associate with unmitigated, unredeemable monsters.

I’m lucky I still have a voice to help me do just that.

We are Americans. We should be taking care of each other, our sick, our poor, all of our people. We have the capability to do just that. A government’s job is to take care of the people under its care, to protect them from enemies within and without. We should protect all of our citizens, and when it comes to military spending we seem to think no cost is too high, no weapon too expensive. And yet… an estimated 43,000 Americans will die prematurely annually without access to affordable healthcare, the casualties equivalent to having a terrorist attack of the scale of 9/11 every single month.

Those 43,000 lives have worth. My life has worth. I am ill, I am disabled, and I am worth keeping alive.

Even if our Republican representatives do not think so.