Disability March (Part 2)

The Future is Accessible
Image Description: Me in my blue “The Future is Accessible” t-shirt (designed by Annie Segarra) smiling for the camera, vaguely in front of playground equipment.

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. If you would like to share yours, you can on the home page of Disability March II (click on this link and then there is a yellow tab that says “Join Here”). Last year we had more than 3,000 participants by the end of January-I think we can get even more. Making disability visible.

I hope to see you there!

Kristin

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.

 

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.

International Women’s Day and Day Without a Woman

devalue

Today is International Women’s Day. This particular March 8th is also, in the United States, Day Without a Woman – a general strike to highlight the importance of women and how their contributions of both paid and unpaid labor are grossly underappreciated. I have been spending all of this week leading up to today trying to figure out how best to honor both.

The easiest way to support the day and the strike is to wear red, a show of solidarity with women fighting for equal rights, opportunities and recognition. Done. I’m wearing red, my two kids are wearing red. Easy.

red shirt

The next is slightly harder. As women purchase 70-80 percent of items and services for sale, women are asked to refrain from purchasing anything today, to demonstrate how much our purchasing power is worth. Another way to do that is to purchase exclusively from women-owned companies. I will be purchasing an item to support the wonderful online site The Establishment, a bastion of intersectional feminism and support for writers (they pay every writer for every story they publish-which is unusual and welcome in the world of online publishing). I won’t be buying lunch, or dinner, or groceries, or clothes, or books, or my kids’ haircuts or an oil change for the car today.

The last is the most difficult. Women are called upon to strike from all paid and unpaid labor today. Except for the once-a-month tutoring gig I do get paid for, all my labor is unpaid right now. I am a published writer who last got paid for an essay in 2007, and a stay-at-home mom. When my husband is not traveling for work, we already share household chores and child-raising tasks equitably. He doesn’t need a reminder of what I do, and I feel appreciated. And if I refrain from writing, I lose the opportunity to advocate for recognition of the work that women do. So I won’t be taking time away from unpaid labor.

I also never thought of it this way before, but I have women in my employ. I am a chronically ill person who functions most weeks as a single mother would, taking care of everything while my husband travels for work. We have a service come and clean our house every two weeks to help. Vacuuming, washing floors, dusting high shelves, scrubbing toilets: I can technically still do all these things. However, the pain and energy cost of doing these chores (my fibromyalgia tends to flare) leaves me bankrupt for days sometimes, unable to do other things that need doing. I am so grateful to have the three women who do this work for me. Wednesdays happen to be the days they come. I appreciate what they provide for me so much, and know I am a more productive person if I let this work still happen. If they do strike today, I am completely supportive and understanding. If they do not, I will try to make sure to tell them how much I appreciate the work they do.

But, most of all, what I want to do today is explain just how many women make my world possible. I have lived in the world of women for a decade, a world of stay-at-home moms, retail workers, grade school teachers, pediatricians, nurses and volunteers.

I will start with school. From the early intervention services that my youngest had at age two, to the fourth-grade teacher my oldest has now, almost every single educator my kids have had have been women. Since preschool my oldest has been taught by at least thirty teachers and four teacher’s aides, and only three of them have been men. Since early intervention my youngest has had four speech therapists, and at least twenty-four teachers and teacher’s aides, I think one of whom has been a man. We have a male principal, but the vast majority of workers at the school, from the school secretaries to the lunch moms to the volunteers who organize fundraisers and room parties, are women.  Grade school workers are notoriously underpaid and in a capitalist society being underpaid means being underappreciated. I love our school.

I went to work out today. Seven out of the nine receptionists I see regularly are women. When I peek in on classes, I have yet to see a male instructor. Most of the trainers are women. All of the instructors for early childhood classes at my park district are women.

I thought about spending time at our library. I have seen two male librarians over the course of nine years.

Where we get our boys hair cut, eight out of the nine hairdressers I see regularly are women.

Grocery stores, at least half the employees are women. Fast food and slower paced restaurants seem to be the same, at about 50%. So is our local post office.

Clothing and shoe stores? Almost 100% women.

Our local food pantry and community services administrators? 80% women.

Emergency room at our local hospital? The boys and I have only ever seen two male nurse versus about twenty female nurses. We’ve seen two male doctors versus at least ten female doctors.

The pediatrician’s office? All the nurses are women. Half the doctors are as well.

We would visit my mother when she worked at the offices for our local church. A full half of the support staff the offices, and roughly 90 percent of the teachers for both year-round parochial school and CCD were women. And these are just the paid positions. Mothers often volunteer to help even more. In fact that’s how my mother got her foot in the door for this job in the first place.

Most of the women I know, whether they work outside the home or not, do vast amounts of unpaid and unappreciated labor. I once had a conversation with other moms who were completely shocked that my husband did the grocery shopping for our household. I was told that to expect their husbands to do this task was completely unthinkable. Working women still do more household and child-rearing chores then working men. Stay-at-home mothers are still looked down on as if they aren’t contributing.

Most caregivers for disabled people and the elderly are women, both paid professionals and unpaid family members.

On top of all this, is the emotional labor that I have seen women do for free. The labor of keeping relationships healthy, families emotionally whole, communities functioning and working together.

The contributions women make to this country, to the world, are staggering.

The last other thing I am going to try to do today is to spend time not only thinking about how much would be lost without women doing the too-often invisible work of the world, but how much would be lost without their voices too. I have set my playlist to all the music I own either written or sung by women. I am reading I Am Malala for the first time.

women's voices

 

This is how I will spend today.

Loser

wilted-flower

I have been meditating on the idea of loss this morning. Fear of loss, the imagined specter of what might be, is horribly powerful. The fear of attack, the fear of hunger, the fear of oppression, the fear of disability, the fear of failure, the fear of war. The loss of dreams, loved ones, security, ability.

What is one of Donald Trump’s greatest insults, one he uses all the time?

Loser.

We are terrified of loss, and terrified that that loss will define us in ways that make us less than. Others will see the taint of loss in us, and we will no longer be good enough, worthy enough.

Failures of empathy are often failures of imagination, we do not want to imagine how horrible it would feel to sit with the losses that other people do. It seems contagious. This is why many people shy away from the grieving, or take up protective denial at how bad a situation is. Truly understanding what someone else is going through makes us acutely aware that it could happen to us, and that is frightening.

Life is frightening, and having evidence at our fingertips that it is capricious is more so. Some people want to believe that when misfortune happens the unfortunate person brought it upon themselves-poor choices, lack of faith in God, excessive vices, ignorance. Some people don’t want to believe the situation is as bad as it seems-they diminish someone else’s hardships as a way of distancing themselves.

Those of us who have felt loss that was stinging and life-altering will wonder for a long time if we did something to cause it, we hide how bad it was away from our loved ones out of compassion as we don’t want you to feel frightened. But, if you have felt deep loss, deep oppression you know in your bones that Trump’s assertion is all a lie. Experiencing the losses of life are not indicative of your worth as a human being, they are an inescapable part of being human.

We can compound the effects of loss upon people by being too frightened to face it, to look it in the eye. And if you have yet to really experience loss you will be even more frightened. This is where privilege comes in. I had the privileges of being white, straight, middle class, educated, thin enough, pretty enough, Christian enough, free from sexual abuse. By the time I got to college, I had two beloved grandparents die, and that was the most I really knew of loss. And my fear of losing anything was palpable, it felt, at the time unendurable. When you haven’t lost much yet, losing feels like it will be worse than death.

On the other end of the spectrum are people who have had more than their share of loss, and looking at other people’s losses might sink them with the weight of all the unfairness of the world. Adding other people’s losses onto their hearts is too great a burden, and they may turn away.

Loss is something we will all have in common, if we don’t already.

To have a leader who looks at anyone who has ever lost anything as a “loser”, with all the degrading connotations that implies, is unconscionable. If that was the only despicable thing he had ever done, it would have been enough for me.

Although, I suspect he is more frightened of loss than any of us will ever be. He has done everything in his power his entire life to ensure he never has to endure the sting of loss even once. And his lack of human feeling matches the measure of his fear of being a “loser”.

The antidote, the key to empathy, the key to really understanding and alleviating suffering, is then bravery. Facing down your fear that something horrible will happen, because if you live long enough something always will, is imperative. Difficult and excruciating, but imperative. Face your fear of loss with as stout a heart as you can, knowing that this scares every single one of us, too. Then we can actually take practical steps to truly help each other

Expecto Patronum

expecto-patronum

These are dark days. Exhausting days. Days that promise a new affront to decency and stability every damn hour.

I am trying.

I have been filling a journal with things that make me happy, unfailingly happy.

Activities.

Songs to dance along to.

Song to sing along with.

Foods.

Movies and TV shows.

Reminders to take my medicine on time.

Reminders to breathe.

Lists of things I want to teach the boys.

Things I can do to make my environment more orderly.

Beautiful things.

Silly things.

Lists of painters I love.

Lists of comic strips that make me smile.

Reminders to stretch.

A list of exercise classes I can get to quickly.

Nail polish colors.

Names of people I love.

Inside jokes with my husband.

Lists of things with soothing textures-smooth stones and fluffy hair and grass.

Descriptions of places I love.

Little things I can to do show my family I love them.

 

Anything I can think of to pierce the darkness, it goes in the journal.

 

I flip through it whenever I need to, and I need to almost hourly right now.

 

I am not going to lose my soul to this fight.

Expecto Patronum.