Illness

In 2013 I was diagnosed with Fibromyalgia. I had been dealing with mysterious symptoms for years, and putting a name to my chronic illness has meant being able to understand how it has changed my life.

Moving

~ Kristin DeMarco Wagner ~ Leave a comment

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

~ Kristin DeMarco Wagner ~ Leave a comment
glacier-tour
Image Description: A family of four, two boys, a mother and father, bundled up in coats in front of a glacier

Hi Everyone!

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

Hope you’re all doing well!

Love,

Kristin

Essay at The Manifest-Station

~ Kristin DeMarco Wagner ~ 2 Comments
Boys room
Image Description: A child’s bedroom with two beds and one wall that is mostly blue with paintings of planets, stars and a close-up of the moon on it.

Hi everyone!

Today I have an essay up at The Manifest-Station called Bedtime (you can click on the title to link to the essay).

This is a story of two bedtimes, one recent and one more than six years ago. Part of the story is about the painful limitations I encountered being a parent with chronic illnesses. Part of the story is about how miraculous getting to be a parent at all feels.

This is a chapter in the book I am working on called Quote/Unquote “Healthy”.  I announced here last summer that I hoped to have it done before the 2017-2018 school year. Well, illness gets in the way sometimes (and adds more chapters I need to write about!) but I hope to have the full manuscript done by November.

The Manifest-Station has given this story a wonderful home, and a gorgeous accompanying picture that is beautiful…and makes me smile as it doesn’t look much like the room this actually took place in. So, for you all I included the real thing, for authenticity’s sake.

I hope you are able to check it out.

Love,

Kristin

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

~ Kristin DeMarco Wagner ~ Leave a comment
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

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.

Happy Birthday To Me!

~ Kristin DeMarco Wagner ~ 1 Comment
Image: Pink Crabapple in bloom
Image: Pink Crabapple in bloom
Image: White Crabapple in bloom
Image: White Crabapple in bloom
Image: Lilacs in bloom
Image: Lilacs in bloom
Image: Flowering Tree
Image: Flowering Tree

 

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.

Portrait of a Walking Disaster

~ Kristin DeMarco Wagner ~ Leave a comment
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

~ Kristin DeMarco Wagner ~ Leave a comment

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

I’ll Get to You Soon

~ Kristin DeMarco Wagner ~ Leave a comment

midnight

It’s a new year.

It’s finally a new year.

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.

This year feels different.

Welcome 2017.

I’ll get to you soon.

I think I’m going to need a few minutes though.

Why My Posts Have Been Sporadic Lately

~ Kristin DeMarco Wagner ~ 2 Comments

sky.JPG

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…

Dang, only five percent.

But that’s a lot higher than zero!

Traveling While Chronically Ill

~ Kristin DeMarco Wagner ~ 2 Comments

Alaska Books

This trip was supposed to happen last year. We wanted to go to Alaska last summer, but we didn’t. The reason sounds spoiled and selfish when I explain, “Well, we didn’t have quite enough frequent flier points to fly first class, so we waited another year.” I sound like a twit. But I really struggled with being okay with flying six and a half hours without guaranteed food, without a guaranteed bathroom, without space to stretch. I have chronic illnesses and I can only push myself so far before I collapse.

It happened when we went to Puerto Rico two years ago. A four and a half hour flight with barely any food left me feeling sick, so sick in fact that my body cramped and lurched in the hustle of a 90 degree airport and I nearly passed out when we finally stopped and ate. On that same trip, which I do recall happily as one of my favorites, I threw up one meal where I was assured there wasn’t any dairy (but I’m pretty sure there was), and had to turn around on a rain forest hike because I felt like I couldn’t breathe from anxiety and humidity. I spent a lot of afternoons recovering from busy mornings.

Last year, in Wisconsin, I had to take an impromptu walk when my muscles cramped up so painfully I was going to get a migraine. A few times I had to prepare and drink a protein shake in the middle of the night because my blood sugar went too low.

Three years ago in Kentucky I was up in the middle of the night crying because my body hurt so much.

I am packing for Alaska now, and each item I put into a suitcase reminds me that I have to plan for the inevitability that at some point on this trip, my body or my mind will fail me. It is going to happen.

I keep my prescription medications, glucose meter and supplements in my carry-on bag. I cannot afford to lose these items. Also in the carry-on will be a 12-pack of dairy-free protein bars that can act as meal replacements or a quick fix for low blood sugar in an emergency. One of my few precious fluid ounces will be my Flonase.

One of our large suitcases holds winter jackets, gloves and hats. In some parts of Alaska it’ll be in the fifties and rainy, and my body cramps up wildly when the temperature drops too quickly. My ergonomic pillow will also be in that bag, so that I don’t wake up with back spasms each morning.

One bag will contain our guidebooks in which I have researched which restaurants near our hotel will have a diverse enough menu that I have a chance of finding dairy-free food. I have a grocery list and the address of the nearest Anchorage Target ready for when we land so that I can get enough non-perishable snacks to last me on a twelve hour bus tour of Denali and a 6 hour glacier tour out of Seward (lunch will be provided, but of course it all has dairy and if I go too long without eating at all I might pass out).

I bought seasickness bands for all of us because we’ve never been on the open ocean and I can’t handle being sick for 6 hours at a time.

We have backpacks, but I have to make sure I don’t overload mine, or my shoulders will cramp.

I can’t wear flip-flops anywhere where we will have to walk a long time, because my legs will cramp and my feet won’t uncurl.

I need to have ibuprofen available at all times, because even a storm rolling in can push me into severe pain  (I have been checking the weather obsessively to try to steel myself).

I will bring make-up because there will be times I get very sick, and I don’t want to look very sick in our vacation pictures forever and ever.

I will bring my notebook with all of our information everywhere we go, because when I feel sick sometimes my brain goes foggy. When that happens I can’t remember simple words, nor can I figure out how to navigate my normal life much less a brand new environment. Knowing my brain is unreliable is scary, and then my anxiety kicks in making it even harder to take care of myself and small children.

Sigh.

All in all it sounds as if traveling is more trouble than it is worth. But if chronic illness has taught me anything it is that anything you want in life is going to take work. An uphill battle just means that the view from the top of the mountain is going to be that much more spectacular once you get there.

Puerto Rico was amazing and tropical.

Wisconsin gave me time when I could just enjoy being with my kids without nagging them about cleaning up toys or doing homework.

Kentucky gave me a chance to see family I love dearly and wouldn’t get to otherwise.

And Alaska? I have never had the chance to see anything like it. I don’t live near mountains, or the ocean, or moose or bears. I might never get the chance to see these things again. I want to see my kids’ faces light up when they touch a glacier, and my husbands eyes widen when he sees an orca. I want to feel the weight of a fishing pole as my son hooks a salmon. I want to smell salt-spray. I want a chance to see Denali.

I want to prove for myself that the trouble, the pain that goes into everyday life, and the pain and trouble of reaching for the extraordinary is always worth it.

Alaska Clothes