Political Essay at Progressives of Kane County

author pic Heidi

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 at the website for the Progressives of Kane County titled “The AHCA Will Be Dangerous to Us All” (Click on the title to take you the essay). 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.

This website is an excellent resource for anyone who wants to fight for progressive values in Kane County, Illinois, complete with calls to action, meeting times, important resource links. Please check it out for more info if you live in the area.

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

Happy Birthday To Me!

 

I took a walk today, for my thirty-eighth birthday, since it was beautiful out and all the flowering trees are in bloom.

It dawned on me that this, today, this walk, was a good example of what life is like with chronic illnesses, a good illustration that may clear up some misconceptions.

I am very allergic to spring pollen. Right now my chest feels tight and congested, my throat gummed up and my body generally achy. I could stay inside with all the windows shut-that would make my physical suffering considerably better. Some days, when life is stressful, I choose to do so because dealing with feeling miserable all the time (even with medications) can be hard. My life indoors is still full and interesting. There are still movies and music and books and food and cuddling and crafts and games that I can enjoy locked away from the outside world.

Some days I want to expend the effort to be in the middle of of these beautiful things that make my life demonstrably harder. Literally, these gorgeous temporary blooms make my skin itch and my eyes water and my head hurt. But it is worth it, sometimes. It is worth the extra discomfort to get to enjoy something that is outside of my comfortable realm. I just celebrated Easter and a beautiful wedding on the same principle-the discomfort of knowing I might feel rough from overexertion was worth it to see family and to celebrate with them. But I did end up feeling very rough.

Just because I am happy, and happily occupied, doesn’t that I am suddenly healthy and well. Almost 100 percent of the time I feel at least a little ill, and the majority of the time I feel sick (maybe nauseous, maybe weak, maybe in pain, maybe just congested and stuffed up). I look well because the markers we use to figure out if someone is sick-a green pallor, a disheveled appearance, a frown, an inability to do the activities we want to do – are often absent when I am doing something I enjoy. So people mistakenly think I’m healthy.

And just because I feel sick in the middle of a happy occasion doesn’t mean I am automatically sad. When generally healthy people feel sick, they (for the most part) stop everything. Normal life is put on hold, and when you have the flu or a cold you give yourself permission to just feel bad. When you feel better you go back to normal activities. There is a separation between the two worlds-one is full of rest and recovery and feeling both emotionally and physically down, the other is full of activity and fun and feeling emotionally and physically up. For chronically ill people there is no clean division. I can be physically very unwell but still emotionally very happy. I can be physically well and emotionally unwell. Sometimes I do get upset about my limitations when something I want is outside of my reach. Sometimes I push my limitations as far as they will stretch to bring something I want in reach and pay the price later. But my life isn’t a stunted or limited one.

As long as I have agency over what I do, I get to decide for myself what I am or am not capable of at any given time, I have a good life. Not an easy life, no, but a good one. This is unthinkable to people sometimes, that its possible to have a good life in the middle of illness or disability. It leads to misunderstandings. I hope I can clear some of that up.

I was brilliantly happy to take a walk through my neighborhood today, snapping pictures of all the flowers, breathing in the scent of lilacs.

I also feel like I have a brick sitting on my chest, and I could use some ibuprofen and caffeine to combat this headache I’m getting. Or am I feeling worse because I ignored my hypoglycemia guidelines and had a cinnamon roll for breakfast and need some protein? Is it allergies or fibromyalgia making my neck hurt?

No matter, I have a birthday/therapuetically-necessary-every-six-to-eight-weeks massage scheduled for tomorrow. And a dairy-free dessert to make for myself for later.

When Fiction and Reality Meet

Room

My favorite reading experience, where the book I was reading matched the circumstances around me perfectly, used to be easy to pick out. I often used to take the train from the Chicago suburbs to Champaign-Urbana, when I bounced back and forth between my parents’ house and college. This particular trip I took was in the evening in the middle of a cold, clear winter. While the train was usually full enough that I was obliged to make small talk with a seatmate, this time it was almost completely empty and silent. Every other time I sat under fluorescent lights with dull grey metal all around me. This time I found myself in a refurbished Pullman car. Red velvet lined the seats, with a fringed gold trim edging the armrest. A sumptuous carpet rested under my feet. The lights had a soft glow emanating from ornate sconces. I burrowed myself into my seat, cushioned and alone, and picked up where I had left off reading The Shining for the very first time. The opulence matched The Overlook Hotel, and as I glanced out the window at an endless stretching snowy winter, seeing a single farmhouse light in the distance echoed my own isolation and that of the Torrences. For nearly twenty years that has been my favorite.

I may have a new contender. I have been sick with a really horrible protracted cold, and my boys are now sick with the same excruciatingly slow virus. My husband is traveling for work, and the boys have now missed three days of school. Last night my oldest wanted to sleep on the couch, so when he went to bed I tiptoed to my room and grabbed a book since I was not going to be able to fall asleep at 8:30. I had bought Room by Emma Donoghue more than a year ago and hadn’t touched it since. I’m not sure if I was worried that my heart wouldn’t be able to take it, but for some reason it nearly jumped off the shelf at me this time.

We are told the story through the perspective of a five-year-old boy named Jack. He and his mother are held captive in a small room by the man who kidnapped his mother years ago. The book opens on his fifth birthday and describes how they manage to make a life for themselves in “Room”, a place Jack has never left. It opens on the day of the spring equinox. I began to feel eerie, as yesterday was the spring equinox as well. Jack describes what TV shows he likes to watch, and because this is set in contemporary times, they are all shows my children watched too. Backyardigans, Wonder Pets, Dora the Explorer. The way his mother helps structure their days reminded me so much of what it was like when the boys were small, when one day can bleed into the next if it is just you together in the house, seeing no one else, going nowhere else. A state I am in right now. It is just us, quarantined away from the world, only using the resources we have on hand, and with each other as our sole company. It is both intimate and confining all at once.

Jack counts his teeth with his tongue when he is trying to distract himself. Each time he does I do the same and am reminded that a crown popped off one of my teeth earlier in the day. As I think about when I’ll be able to get that fixed Ma takes a ‘killer’ (painkiller) because her bad tooth is aching very badly. She is also waiting to get her tooth fixed, though for her it may never happen.

I read more than half the book in that one sitting, entranced, both seeing myself and the day I just had and the day I was about to have stretched before me, and seeing how much more I had that they didn’t. A window. A telephone. Food in the cupboards. The ability to open the door and feel fresh air on my face. Things I would never have stopped to appreciate that I still have even if I don’t have the Outside right now.

I’m not capturing how odd it felt, how odd it feels when your reality and fiction blends so perfectly together that you cannot extract one from the other. It isn’t something you can plan, though luckily sometimes it comes together. I read a scene from The Signature of All Things where the protagonist laments how useless paper is on a tropical island exactly one day before discovering all our paper was a humid mess in Puerto Rico. We read Harry Potter for the first time through the 2016 election and the coincidences were spooky (though that is an essay for another time). I guess I’ll tell this story better after twenty years than I do now, but I wanted to say…

Books are magic in a totally unpredictable and unusual way. And in the middle of a boring household cold, I got to experience that again.

 

Happy Irish-Italian-American Day!

irish-Italian
[Picture of red tomatoes and a box of spaghetti above. Picture of shamrock and plaque that read “Home is where your story begins” surrounded by Celtic knots below]

I am half Irish-American and half Italian-American, more or less, give or take. On the Irish side there are a few Scottish and French ancestors, and on the Italian side we are more accurately Sicilian. This is a fairly common background for people who live near Chicago, Boston, or New York, as both of these European immigrant groups settled in these cities in large numbers. I get that it isn’t very common in the rest of the country – when I lived in Tennessee and Texas I was hard-pressed to find anyone who was either Irish-American or Italian-American, much less both.

Chicago, however, is city that dyes its river green every St. Patrick’s Day and has a bag-pipe filled parade. It is also a city that celebrates St. Joseph’s Day on March 19th with groaning tables of Italian food and the color red. Patrick is the patron saint of Ireland, Joseph the patron saint of Italy. It stands to reason, that in the Chicagoland area March 18th should be Irish-Italian-American Day. You know, split the difference and celebrate the best of both cultures.

My brother and I went back and forth on suggestions. Maybe of viewing of Brooklyn or Return to Me (apparently there is an Irish-Italian restaurant). I can’t remember if it is A Bronx Tale or Goodfellas that features characters who cannot be full mafiasos because they are part Irish-but I’m thinking I’m tired of Italian heritage being reduced to the mob. Maybe I’ll watch the beautifully animated Song of the Sea again.

My general feeling is that I would be best served eating Italian (and Italian-American) food while listening to Irish (and Irish-American) music. Gnocchi, lasagna, caprese salad, tiramisu, cannoli, lemon knot cookies, pizzelle, agli olio, espresso, eggplant parmesean, stuffed artichokes, pasta fagioli. Gaelic Storm, the Cheiftains, Van Morrison, Flogging Molly, U2.

The reverse would be all right too, if perhaps a tad less illustrious. I really do love a good stew, potatoes are always a favorite, and my oldest kid even likes cabbage. I can appreciate opera (Nessun Dorma sung by Pavarotti is heaven) and Frank Sinatra will always have my heart.

I could binge read, James Joyce and Dante, William Butler Yeats and Petrarch.

Check out the artwork of the Book of Kells, and the Renaissance.

Drink beer or wine.

And both places are beautiful.

You know, it is almost as if there is no wrong way to celebrate.

So for everyone out there who has both Irish and Italian heritage in America, in between Shamrock Shakes and sweets tables, there is one day that could celebrate both. Let’s do it!

Happy March 18th, everybody!

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.

Portrait of a Walking Disaster

ankle-injury
This is a very old picture. No need to send me a sympathy fruit basket. Unless you really want to.

 

A (Barely) Fictionalized Account of My Klutziness Through the Years

 

2016

“Uh, honey?”

“Yeah, what’s up?”

“So I really hurt my ankle taking the kids to school. I’m having a lot of trouble walking.”

“Are you serious? How?”

“Ice.”

“Uh, I do not know how to handle this right now. Are you okay?”

“Sure, I’ll just ice it, I’ll be fine.”

 

2014

“Ooooooooo, I really screwed up my elbow! Like, I think it might be broken.”

“Are you serious? How?”

“Weeding the garden.”

“Weeding the garden?”

“Yeah, there was one weed that was really stubborn and I yanked too hard, and when it gave way I went flying.”

“Uh, I am in the middle of grouting the backsplash. Are you okay to wait?”

“I’ll put some ice on it.”

“Did you really need to weed the garden two days before vacation?”

“Who the hell knew I would break my elbow just weeding?”

 

2012

“I hurt my ankle. I can’t really walk.”

“Are you serious? How?”

“I was playing with the kids at the park, and I was pretending to walk the curb as a balance beam and I stepped off funny.”

“Are you okay?”

“Yeah, I’m icing it right now.”

“And elevating it?”

“And elevating it.”

 

2008

“So, am so glad your cell phone is working, I just called 911, and Mom and Dad. I shattered my ankle pretty bad. Dad’s going with me to the hospital, Mom is going to watch Nicholas.”

“Oh my God, are you serious? How?

“Ice. I was taking out the garbage and I was wearing the wrong shoes and they slipped, and I went down hard and I tried to put weight on it but I couldn’t, and I had to crawl up the driveway in the snow, and then my cell phone wasn’t charged, and then I left the portable phone upstairs and I had to crawl upstairs and then I called Mom and Dad, but I couldn’t call you ’cause the cell phone wasn’t charged and we can’t call long distance from the house, but I could call 911. And it hurts really bad.”

“Uh, I don’t know how to handle this right now. Are you okay?”

“No, but I will be.”

“I’ll get a flight back, but I came out on a regional, I don’t know how fast I can get back.”

“I’m icing it until they get here.”

“And elevating it?”

“And elevating it.”

 

1993

“Mom, I think I really hurt my ankle!”

“Oh no. How?”

“I kind of missed the last two steps of the stairs.”

“Are you serious? How is it you can be graceful in dance class, but you can’t walk to save your life?”

“It’s not like this happens all the time.”

“Uh, I don’t really have time for this. Your brothers have soccer and boy scouts tonight. Can you ice it until I can get you to the doctor?”

“Yeah, I can ice it.”

 

1991

“Mr. DeMarco? Yes, thank you for calling us. Your daughter is still in the Emergency Room, we have not transferred her to a room yet. As soon as you get in the receptionist should be able to direct you here.

“Hmmmm. Well, it seems she was trailing her fingers along a wall by the fairground’s bathrooms and the hinge side of the door closed on it and took the tip clean off.

“Yes, hard to believe but I am serious. Is she okay? Yes, I’d say so. We’ve cleaned the wound and have given her painkillers, so she appears to be in good spirits. Oh and we’ve iced and elevated it until we could get you in and get a consultation with our surgeon.”

 

1985

“Awaaaaaaahhhhhhhhhhhh”

“Oh no, Michael, there’s blood everywhere!”

“Are you serious?”

“Kristin, are you okay?”

“Awaaaaaaaaaahhhhhhhh”

“How? Just how?”

Sob, hiccup, sob “I was pretending the couch was balance beam, and I fell off and hit the coffee table.”

“Why on earth would you do something like that? Just two days after moving?”

“I didn’t know I was going to get hurt just (sob) PLAYING!”

Faint muttering stage whispered just loud enough to hear. “I thought those dance lessons were supposed to help her be less of a klutz. What are we paying all that money for?” Louder “Lorena, you go call the doctor.  I’ll go grab the ice.”

Rubbing of temples, pinching the bridge of his nose, muttering again. “Ugh, I do not know how to handle this right now.”

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