"There are years that ask questions, and years that answer." Zora Neale Hurston
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.
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.
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.
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.
A (Barely) Fictionalized Account of My Klutziness Through the Years
“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?”
“Uh, I do not know how to handle this right now. Are you okay?”
“Sure, I’ll just ice it, I’ll be fine.”
“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?”
“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.”
“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.”
“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.”
“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.”
“Oh no, Michael, there’s blood everywhere!”
“Are you serious?”
“Kristin, are you okay?”
“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.”
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?
We are terrified of loss, and terrified that that loss will define us in ways that make us less than. Others will see the taint of loss in us, and we will no longer be good enough, worthy enough.
Failures of empathy are often failures of imagination, we do not want to imagine how horrible it would feel to sit with the losses that other people do. It seems contagious. This is why many people shy away from the grieving, or take up protective denial at how bad a situation is. Truly understanding what someone else is going through makes us acutely aware that it could happen to us, and that is frightening.
Life is frightening, and having evidence at our fingertips that it is capricious is more so. Some people want to believe that when misfortune happens the unfortunate person brought it upon themselves-poor choices, lack of faith in God, excessive vices, ignorance. Some people don’t want to believe the situation is as bad as it seems-they diminish someone else’s hardships as a way of distancing themselves.
Those of us who have felt loss that was stinging and life-altering will wonder for a long time if we did something to cause it, we hide how bad it was away from our loved ones out of compassion as we don’t want you to feel frightened. But, if you have felt deep loss, deep oppression you know in your bones that Trump’s assertion is all a lie. Experiencing the losses of life are not indicative of your worth as a human being, they are an inescapable part of being human.
We can compound the effects of loss upon people by being too frightened to face it, to look it in the eye. And if you have yet to really experience loss you will be even more frightened. This is where privilege comes in. I had the privileges of being white, straight, middle class, educated, thin enough, pretty enough, Christian enough, free from sexual abuse. By the time I got to college, I had two beloved grandparents die, and that was the most I really knew of loss. And my fear of losing anything was palpable, it felt, at the time unendurable. When you haven’t lost much yet, losing feels like it will be worse than death.
On the other end of the spectrum are people who have had more than their share of loss, and looking at other people’s losses might sink them with the weight of all the unfairness of the world. Adding other people’s losses onto their hearts is too great a burden, and they may turn away.
Loss is something we will all have in common, if we don’t already.
To have a leader who looks at anyone who has ever lost anything as a “loser”, with all the degrading connotations that implies, is unconscionable. If that was the only despicable thing he had ever done, it would have been enough for me.
Although, I suspect he is more frightened of loss than any of us will ever be. He has done everything in his power his entire life to ensure he never has to endure the sting of loss even once. And his lack of human feeling matches the measure of his fear of being a “loser”.
The antidote, the key to empathy, the key to really understanding and alleviating suffering, is then bravery. Facing down your fear that something horrible will happen, because if you live long enough something always will, is imperative. Difficult and excruciating, but imperative. Face your fear of loss with as stout a heart as you can, knowing that this scares every single one of us, too. Then we can actually take practical steps to truly help each other
You know those years when, at the end, you recap and try to enumerate everything you did, everything that changed, everything important to you, and then realize there is no way it all could have happened in one year? That you must have Hermione’s ability to turn back time and have lived each day as thirty hours instead of twenty-four?
2016 was definitely one of those years.
It doesn’t surprise me much that my whole little family has been sick, that we spent New Year’s Eve at home, in bed by 8:45 for the boys and 10:00 for the adults, that I took a two hour nap with my sick youngest child and then laid still in bed while he napped for another hour after I woke up.
This was a year of emotionally processing everything at breakneck speed. This was a year of having your head hit the pillow and the phone ring seconds after you fall asleep. This was a year of poring through stacks of research and finding the answer you’re looking for with bleary bloodshot eyes when you’ve gone too far to give up. This was a year of turning on a dime, being willing to change course and direction with a second’s notice. This was a year of finding that the things you took for granted could disappear. This was a year of pushing yourself past the point of exhaustion to catch at the beautiful truth that has made all of it worthwhile. This was a year of affirming that so much of life is worth putting in thirty hours when you only have twenty-four.
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.
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…