Shared Trouble

I wrote this flash non-fiction a while ago about a blizzard that happened in Chicago in 2011. I’ve been thinking about it a great deal as the whole world prepares to shut down to stem a pandemic and stares down what it is like to be locked away from other people for extended periods of time. My chronically ill friends already know what it is to be isolated at home when no one healthy seems to realize that this is how we’ve already been living. 

Shared Trouble
At least two inches of snow packed against the side of a picket fence, giving the impression of soldiers in formation facing a formidable foe together.

I had enough bottled water and milk, Goldfish crackers and juice boxes, diapers and wipes for at least a week, if not two. I had enough packages of chicken and ground beef and pork chops and hot dogs in the freezer to make dinners for seven nights. Cans of soups and beans and bags of rice in the pantry. If the power went out I had industrial size jars of peanut butter and jelly and several loafs of bread, individual cups of applesauce, mandarin oranges.

In the house I had an extensive first aid kit, wraps and splints, thermometers and burn cream. I had backup ibuprofen for children and adults. All the flashlights had batteries. Extra batteries. Chargers.

We had our DVD collection if the cable went out but the electricity didn’t, board games, the blue cube cloth bin of Hot Wheels cars and the entire cabinet full of Hot Wheels tracks, the bookcase full of stories to read aloud. If the wind howled too violently, we had the old couch cushions we used to pad the tile floor of the laundry room during tornado warnings. We had a thick pile of blankets and footsie pajamas.

Everyone called the day before the blizzard asking if I was ready. If we had fuel for the snowblower (always), a full tank of gas in the car (yes), water and food and emergency supplies (I do). In every conversation my parents, my in-laws, my brother, my brother-in-law warned me that the crowds were hectic at the grocery store or the lines were long at the gas station and I verbally shrugged that I didn’t need anything. They got confused. I was confused at their confusion until it crystallized-they didn’t know this was how I always had to live.

At this point it had been four years that my husband had been traveling for work almost every week. It had been two years of being a mom to two small boys, and the only caregiver 24 hours a day for three or four day stretches. It had been one year since the pain started that wouldn’t go away and didn’t then have a name. I was always prepared for multiple days of isolation with a four-year-old and a toddler. We weren’t always trapped, but we were too often trapped by my sudden, changeable and unpredictable limitations. The week of this blizzard, my husband had left before the forecast showed what was coming, and flights weren’t returning through white out conditions. It was just the three of us, as it often was.

My family misunderstood what sort of help I might need because I’d adjusted to my new reality when they weren’t looking. Cold had started to make my muscles crack under the strain, light dazzling off snow might send me into migraines. The room could spin or my limbs would get heavy or my hands would cramp too hard for me to hold a potato I was supposed to peel for dinner. Our home was well-stocked and prepared because I needed to care for two little people when my body would sporadically make it nearly impossible to leave.

I spent the night of the storm awake and alone, bolt upright in bed feeling the air in the room vibrate with energy as the windows shook in the wind, and watching the lights flicker out but eventually hold. Lightning began, but instead of brilliant and shining, the light was gauzy and diffused through the snow. Thunder rumbled loudly enough to keep me vigilant and alert, but quietly enough that the boys stayed asleep in their beds. I could have used my babies snuggled up against me, light snores giving me white noise and the weight of their arms draped on mine, keeping me from clutching a phone in one hand and a flashlight in the other. I could have used the solidness of their needs to keep me from worrying what if, what if, what if. But they weren’t and this night passed like so many others by myself-watchful waiting to see if a problem cascaded into an emergency that meant I needed to call for help. How many nights had I spent alone waiting to see if a pain became unbearable, if a blinding crack of a violent headache meant I needed to call 911, if a weight pressed on my chest was my heart failing? How many mornings had I woken up worse for a horrible night but still alive, tasked with making our little life at home happy? How many times had I quietly panicked and never told anyone?

By the time the streets were halfway plowed, family came to dig us out. I happily made hot cocoa for our guests. It was nice to have company.

Something a blizzard can do, because it’s large and dramatic and a shared trouble, is bring people who might understand how to help to your doorstep.

My illnesses, small against the scale of the world, invisible because I could almost cope, and almost untranslatably personal, often didn’t.

If You Care, Please Vote

Vote
An “I voted!” Sticker

Today is Election Day in the United States. Voter participation is up in record-breaking ways already. The lines may be long today, so I thank everyone who sticks it out to participate in our representative democracy. It has it’s flaws as a system, but it is our system and right now it is a way we can peacefully neutralize some of the worst that has happened in the last two years.

If you care that we allowed 3000 preventable deaths in Puerto Rico, please vote.

If you care that the word “transgender” was stripped from official documents, please vote.

If you care that every time a mass shooting happens the government pretends that there is nothing they can do to help, please vote.

If you care that disabled and chronically ill people would die without health care, please vote.

If you care that black people are being executed extrajudicially by police officers, even in their own back yards holding a cell phone, please vote.

If you care that asylum seekers are being separated from their children and that they are being imprisoned indefinitely, and that TWO YEAR OLDS HAVE HAD TO REPRESENT THEMSELVES IN COURT, please vote.

If you care that our government has targeted Muslim people from coming to our country, even needing asylum, please vote.

If you care that we are doing nothing to prevent climate change and are selling our national parks to the highest bidder for profit, please vote.

If you care that our education system is being run by someone who doesn’t believe in public schools, please vote.

If you care that white supremacists have been emboldened once again, please vote.

If you care that a credibly accused, emotionally volatile man is now sitting on the Supreme Court, please vote.

If you care that the president has played nuclear chicken with North Korea, please vote.

If you care that we left the human rights committee of the UN, please vote.

If you care that our executive branch has lied thousands upon thousands of times in the last two years, please vote.

If you care that the executive branch has been nothing but a money-making scheme for the richest one percent, please vote.

If you care,

Please vote.

 

Essay at Rooted in Rights

 

Garden Lites
Image Description: A box of Garden Lites Chocolate Muffins that are dairy-free and gluten-free

 

Hi Everyone!

I have a sort of unusual essay/article out today at Rooted in Rights, a disability advocacy group. It is called As a Chronically Ill Mom, Even Tater Tots Are a Way to Show My Kids Love . It’s about being a mom, food being love, preservatives, the Standard American Diet and convenience foods, and it’s part of the conversation around Mother’s Day about what it means to be a disabled mama. I hit a lot of topics in 1000 words!

Hope you are all having a great Mother’s Day weekend!

Love,

Kristin

 

New Essay at Full Grown People- “Spectator”

Rectangle of outside
                                          The Rectangle                                              Image description: A picture window that shows a wintery outside world

 

Hi Everyone!

It’s been a bit since I posted, huh? I am really happy to be able to, to let you know I have a new essay up at Full Grown People today called Spectator. It is about living life watching instead of participating, because often that is what I am able to do. It is also about parent participation night and third grade basketball. It’ll all make sense, I promise!

Love,

Kristin

 

N Basketball
            The Basketballer as a Third Grader                  Image Description: A smiling brown haired boy in an orange Illini jersey sitting at a table

Disability March (Part 2)

The Future is Accessible
Image Description: Me in my blue “The Future is Accessible” t-shirt (designed by Annie Segarra) smiling for the camera, vaguely in front of playground equipment.

I am very proud to be a voice in the Disability March II, a virtual movement of solidarity with the Women’s Marches this January 20 and 21. If you are also disabled (my chronic illness people who may be invisibly disabled, you know you count too, right?) please consider joining in by sharing your story as well. My entry is called Enough (a click on the title will take you to the link), and the more people we can gather the more we show the world that we exist and we won’t be silenced. Last year we had more than 3,000 participants by the end of January-I think we can get even more. Making disability visible.

I hope to see you there!

Kristin