Singing While The World Burns

Singing While The World Burns

Last month was our twelfth wedding anniversary. I would have posted about it, but it was a difficult week. He had just finished radiation, just started new chemotherapy, and we had begun to have overnight nursing care come so I could sleep. We were approaching the last days of school.

I wanted to write about how much I love this man. How much I appreciate him. How kind and how good and how damn noble he is. How self-sacrificing. How humble. How sweet. How loving. How strong. If there has ever been a better man than my husband, I never met him.

Only, there isn’t a lot of romance in a quarantined, convalescent celebration. We watched a few movies, drank a bottle of champagne, and reminisced about old times. We held hands and joked and kissed, and the world outside continued its unending campaign of chaos. We both ordered each other presents that didn’t arrive. We ate brunch foods until we nearly exploded.

I’ll write about our anniversary in a few weeks, when he’s well enough to celebrate properly, I thought.

That was May 23rd. On May 25th, George Floyd was murdered in Minneapolis. And my home, full of Twin City suburbanites, was plunged into new levels of anxiety. I couldn’t write about my husband then, as the protests spread, as white supremacist rioters destabilized and antagonized, as my friends were brutalized by police in Chicago and New York and Seattle.

I wasn’t going to post anything.

Only so much has happened.

The oddly comforting thing about going through this kind of personal trauma while the world is collapsing into disaster after disaster is that everyone is in the same emotional state as you. During Mike’s previous bouts with brain surgery, I’ve felt that I’m standing alone. Can’t you see the world is on fire? I would silently ask, as people went about their days normally, unaffected, unharmed, and unconcerned.

Not now. As Mike’s condition has gotten more and more complicated, so too has the rest of the country.

Since our anniversary COVID-19 cases have spiked dramatically. Protests have established and maintained in every state. Trump had clergy gassed for a photo-op. J.K. Rowling doubled-down on transphobia. Obama delivered a commencement address. There were murder hornets for a hot minute. A spread of five asteroids barrelled towards the earth.

But in our house, different chaos has reigned. Last week Mike had his fifth brain surgery, without pomp or circumstance or significant warning. I drove him to the hospital through police barricades, past military police vehicles, through the secret underground of downtown Chicago. I spent two days kettled in downtown while police rounded up anyone “not supposed to be here.” Mike’s doctors wrote me a note to hand to military police in case I was picked up, explaining that I was needed at the hospital, essential.

And this week, after beginning to make a comeback from his brain surgery and the symptoms that led to it, his pulmonary embolism from March grew and threw a clot. And now here we are, in the hospital again.

There are windows boarded up in the buildings around the hospital. Grocery stores restocking. And there are people without masks wandering around as though COVID-19 is gone. And there are people in masks keeping their distance from everyone else.

It’s as though the hospital is a singularity, warping time in waves around it, and all the possible timelines that could have been are, all at once, now. It feels like the epicenter of an apocalypse, but I don’t know which one it will be.

Will it burn? Will it be overrun by the sick and dying? Will another storm blow it away? Will a meteor fall from the sky and obliterate everything around it?

Since Mike first got sick, I have been saying the same thing. None of us know when we will die, although we all know we will. The only difference between loving somebody with a terminal disease and loving somebody without is that you know. You know they will die, and it’s a thing we usually try so hard to ignore.

People all over the country, all over the world, are opening their eyes to a day where somebody they love may die. From COVID-19. From police brutality. From murder hornets. Every day, today could be the day that the dying starts in earnest.

This has been my life for almost thirteen years, and I have loved my life. I have spent those thirteen years with the best man. With the best love. With near-constant happiness, and joy, and pride, and delight, and ecstacies of the heart, body, soul, and mind. I have had the most incredible life. This was not our best anniversary. This is not our best year. This is probably one of the top three worst weeks of Mike’s life. It’s definitely in my top five. But when we spent seven hours in the ER, waiting and waiting and waiting on pain management for some of the worst pain Mike had ever experienced, when nothing could touch it and he couldn’t breathe and he was scared and I was being calm and taking charge of his care, I could sing to him. I could sing him every song from our wedding mix, the favor we gave all our wedding guests, to make him smile and laugh and sing along no matter how much it hurt, and keep his O2 saturation high enough to be safe.

Mike is stable, his clots aren’t going anywhere right now. He’s on blood thinners and they’re managing his pain, but he’s not coming home in the next few days. I don’t know how long Mike has in the hospital. I don’t know how long Mike is going to live. I don’t know how long any of us will live. But I am here, loving him, as is almost the only thing I can do.

Almost. I can also sing love songs.



Fury: Women’s Lived Experiences in the Trump Era is out now!



You can read more about love and illness here: How Love Lasts Forever When the Great Lakes Can’t

Read my most recent post here: Ghosts

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