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

Beyond Your Blog Hall of Fame

BYB-HoF-Selection
Image Description: The words “Beyond Your Blog Hall of Fame Selection” in white on burgundy 

Ha! So…if you know me you know I am often an over-enthusiastic puppy dog with no chill. The things I am excited about I am all in for. Visiting The Wizarding World of Harry Potter soon? I’ve got my Hufflepuff themed pedicure and I am getting myself either McGonagal or Luna’s wands. Battlebots coming back on TV? The DVR can’t be set yet, but I have reminders already in my planner.

I have been grinning all afternoon. Two separate guest editors at Beyond Your Blog selected my essay Finding Shelter , which was published at The Rumpus on Memorial Day, as a double honoree in the categories of Personal Essay and Editor’s Choice. Which hasn’t happened before, apparently!

This is what they posted today

“Finding Shelter” by Kristin Wagner on The Rumpus

Congratulations on being the first ever to be selected in a category AND as the Editor’s Choice.

Guest editor in the Editor’s Choice category, Rudri Bhatt Patel, shared this feedback: “A well-written essay seeks to make the personal a universal. Wagner weaves a complicated narrative through the lens of an impending hurricane. The anticipation of what might happen should this hurricane land pushes Wagner to contemplate self and her vulnerability. She creates a defined arc, integrates powerful imagery, and wields her truth through her prose. There were several lyrical lines which resonated. My favorite – “Maybe the only thing that lets anyone survive is the ability to stay joyful. It’s the only thing to make the end of the world not feel like the end of the world.”

Guest editor in the Personal Essay category, Lauren B. Stevens, shared this feedback: “There are so many layers to Kristin’s piece, that I’ve now read it a total of three times! Kristin conveys the complicated, and beautiful, nature of student-teacher relationships (I had my own “Dierdre” when I taught), explores the dichotomous nature of our class system in stark detail, and writes about prepping and evacuating during Hurricane Rita with detail so vivid it had me sweating! Absolutely beautiful.”

SO COOL!

That’s all,

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

Essay at The Rumpus

Palm Tree
Image Description: Palm trees set against a grey sky

Hi Everyone!

I have an essay today at The Rumpus called Finding Shelter (you can click on the title to link to it).

It is about a hurricane evacuation in Texas, just a few weeks after Hurricane Katrina had decimated New Orleans. It is also about my inability to really be there for another person, and my realization that I needed to become better, to do better.

I am very proud of this piece. It is a longer one, and has been harder to place. I am so grateful it has found a home.

Thanks!

Kristin

P.S. There are some really neat original illustrations by Clare Nauman that go along with it that I just LOVE!

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.

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.