Maybe the ability to stay joyful is the only thing to make the end of the world not feel like the end of the world
Quiet Courage and Small Moments
I love to put a microscope on small moments of change and growth and empathy and courage that, because they are not flashy or huge, often go by unnoticed.
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. Last year we had more than 3,000 participants by the end of January-I think we can get even more. Making disability visible.
Image Description: a selfie of me-a white femme with long brown hair. A half-assed selfie with messy hair and no makeup, but a selfie nonetheless.
I have *not* written in a while
Six weeks since I’ve blogged, maybe?
Three of four weeks since I’ve worked on my book?
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.
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.
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
Image Description: A t-shirt that says “I am a pre-existing condition” with a list of my illnesses, fibromyalgia, Hashimoto’s Thyroiditis, hypoglycemia, dermatographism, 2 C-sections, post-partum depression and food sensitivities
Image description: the back of the same blue t-shirt with the words “My life has value”
Image Description: a pink t-shirt with the words “I am a pre-existing condition” and a list of my mother’s illnesses, Parkinson’s Disease, hemochromatosis, Mitral Valve Prolapse, and C-section
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.
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
You know those years when, at the end, you recap and try to enumerate everything you did, everything that changed, everything important to you, and then realize there is no way it all could have happened in one year? That you must have Hermione’s ability to turn back time and have lived each day as thirty hours instead of twenty-four?
2016 was definitely one of those years.
It doesn’t surprise me much that my whole little family has been sick, that we spent New Year’s Eve at home, in bed by 8:45 for the boys and 10:00 for the adults, that I took a two hour nap with my sick youngest child and then laid still in bed while he napped for another hour after I woke up.
This was a year of emotionally processing everything at breakneck speed. This was a year of having your head hit the pillow and the phone ring seconds after you fall asleep. This was a year of poring through stacks of research and finding the answer you’re looking for with bleary bloodshot eyes when you’ve gone too far to give up. This was a year of turning on a dime, being willing to change course and direction with a second’s notice. This was a year of finding that the things you took for granted could disappear. This was a year of pushing yourself past the point of exhaustion to catch at the beautiful truth that has made all of it worthwhile. This was a year of affirming that so much of life is worth putting in thirty hours when you only have twenty-four.
But.
I am tired.
I feel like I’ve aged all those extra hours this year. They line my face in a way I don’t recognize, so that even in my transcendently happy moments they are still there. My body needs healing and strength. My soul does, too. The brief span between Christmas and New Year’s usually affords me enough time, enough rest to steel myself to begin it all again. Enough time to refocus, to make lists, to take stock, to start.
Even when I am sick, it has been enough. I am always sick. I even picked up a few more chronic conditions this year, in the midst of everything else that happened.
I’ve been concerned about this since I started writing personal essays and memoir. The stance I take is to be very careful about the information I share about living people. If I know them quite well, I try hard to work with them to see what they are comfortable with me sharing. If I don’t know them as well, I will either still inform them I am writing or I will hide their identities as well as I can. I try also to never write something that isn’t true, and I consider very carefully whether my words can hurt someone’s reputation.
Melania Trump has filed a libel suit against a blogger in Maryland. The Trump lawyers seem, from what I am seeing, to roll deep. They are reaching farther than we thought. And Trump himself has said many times that he would rewrite libel laws if given a chance, which would drastically restrict freedom of speech. So please know what your rights currently are.
I am not a lawyer, and so this is absoutley NOT legal counsel, but I am concerned about my writer friends.
In order for what you write to be considered libel, you have to write something that sullied someone’s reputation. I.E. you have written something that is counter to the other person’s perceived reputation, that is both false AND believable enough that the piece of writing can hurt that person’s ability to function in society. Trump has said so many things on the record himself that simply repeating what he has said is not (in my understanding) considered libel. Nor is telling the truth. And obviously what has been said has not damaged the Trumps’ ability to prosper, so there is that, too.
Also of note, satire is usually well-protected. For instance, if someone calls Trump an Oompa-Loompa, no one of sound mind believes that Trump is actually a fictional character invented by Roald Dahl for the book Charlie and the Chocolate Factory. If you are a satirist, you should be safe.
I have a short essay up at Literary Mama today, a reader response to the question, “How does children’s literature influence your parenting?” My response was Roald Dahl, Candies and Tyrants, a quick essay on what my two boys’ favorite parts of the Roald Dahl canon are, and why.
My posting on the blog has been a bit dodgy this summer (dodgy, huh, I must be reading too much Harry Potter with the boys). Sometimes, in the past, less-than-consistent posting has meant good things are happening (feeling healthy, vacation, etc.) and sometimes that has meant bad things are happening (you know, feeling sick and such). This time around it has meant something different, something I have never attempted before.
I am working on writing an entire book, and it scares the bejeezus out of me.
80,000 words is a fairly standard length for a collections of essays or memoir. My goal is to get at least those 80,000 words into a first draft by next summer. I began about a month ago. So, three hundred words at a time I have plugging along with occasional super productive days of 600 words. This gives me weekends off and is achievable even on bad health days (like earlier in this week I had written about 500 in the morning and spent the afternoon in the ER with shortness of breath). Which is really important considering…
It is going to be a collection of essays around what it is like to be one of those people who floats on the edge of healthy and sick all the time. It will have episodes that illustrate what the depths of brain fog feel like, what being in pain does to your ability to parent, how hard it is to get dairy-free food in Wisconsin. Some chapters (like that last one) are sillier than others. It alternates between the hard and the easy, just like my life does. The tough ones take it out of me as I relive times when I felt overwhelmed and uncertain and scared. And as anyone who ever did theater knows, making someone laugh can be harder than making someone cry, so the goofier chapters aren’t a walk in the park either. It is kind of more exhausting than I had anticipated! At any rate, it certainly wouldn’t do to sacrifice the healthy days I have overextending myself writing too much at once. That would be quite self-destructive.
There is also the emotional tightrope I’ve been walking daily between anxiety and audacity, humility enough to say, “This isn’t working” and the confidence enough to say, “Now this is working!” Not going to lie, it is messing with my head. It is simultaneously as terrifying as jumping out of an airplane and as boring as a 1.2 on a treadmill facing a brick wall. I am beat tired.
So there have been fewer other posts. I have some in the works – I want to write about our glacier tour in Alaska, about the beginning of the school year, about a Little House on the Prairie Cookbook – but it is going to be slow going.
Thank you for your patience and understanding!
Now if you’ll excuse me, I am off to calculate how many words I have written so far against my goal total…
Kristin DeMarco Wagner 