Backdrop

Self-portrait by artist Luchita Hurtado (b. 1920)

Her thrashing limbs and guttural groans last night were emblematic of nothing, I decided. They are the backdrop, though, to this new surreal yet real life. There is no way that I'd suggest what I and all of my comrades have done compares to what everyone else is now doing, but because I and all of my comrades have been reckoning with existential threats since our children and loved ones were "diagnosed" or born, we do have something in our toolboxes that might be of help to everyone else.  That last sentence? The part after the born,? The comma separates the hour between the words I wrote before and tending to Sophie during what I think is a non-convulsive status event. The comma separates the washing of hands, lying next to Sophie in her bed and spooning her in a vain attempt to still the constant jerking, the anointing of my hands with Frankincense oil and placing of them on the back of Sophie's head and then feet, the appeals for mercy, the calling on the saints -- Anna Schalk, Viola Frymann, Bonni Goldstein, that guy who did long-distance healing in 1997, Dr. Jin, my friend Carrie Link -- and then, finally, the administering of rectal Valium, one vial of which was in my medicine cabinet, unused for nearly two years but blessedly unexpired from (remember the comma) this writing. My proverbial toolbox includes a certain calm that is one part repressed hysteria, one part dark, dark humor, one part resignation, one part great understanding, one part compassion for all that is vulnerable, one part judgment for those that are selfish, one part joy for the ground and the air and the water and all that is green, and one part for the recognition that life and death are not at war but working together. (I confess: the dark sense of humor and the judgement for those that are selfish might each constitute two to three parts.)

Here are more thoughts from my friend Sandra Stein:

I must say I’m bemused by all these recent reports of how Covid-19 is exposing the vulnerabilities and system failures in US healthcare and social safety nets...

Ahem! My kid has been doing the same for almost nine years!
And since so many are providing lists of things to do under our current circumstances, here are 10 hard-earned, unsolicited lessons from the Warrior Den:
1. Spread fierce love and gratitude
2. Practice forgiveness.
3. Fight unjust arrangements, even the ones you think you benefit from.
4. Know that folks are better at acute than chronic. Soon this will feel chronic and nerves will fray. (See #2)
5. Find gallows humor in all of it.
6. Experience some form of joy every day, no matter what the day brings.
7. Accept that nothing is permanent.
8. Use these disruptions well for the deep reckonings they allow; take stock of your lived values—if they feel warped, unwarp them. Our current arrangements don’t work and won’t work, even for those supposedly benefitting from them....and even if we all wash our hands and stop touching our faces.
9. Live as if all lives have equal value, in all stages and all forms...and act on behalf of all of those lives. Don’t hoard shit.
10. Embrace radical acceptance...of our difficult situation, of life and loss, of human fragility...NOT of the madhouse fuckery of our system (for the system, see #s 3, 8 and 9)

"Home is a Medicine Unto Itself"

Gustav Klimt

“The wind blew my eyes off my face and I caught them in my hand,” my son declared, pointing to his pre-school art project. The assignment was to glue a hat, pants, shirt, mouth and eyes where they belong on a pre-drawn outline of a human body. The hat was where you would expect it, as were the mouth, shirt and pants. But both eyes were glued to the left hand.

“Wow, that’s poetic!” I replied, and wrote down the quote at the bottom of the paper with his age, “2 and a half.” Then I taped the masterpiece to his bedroom wall.

A week later he had a seizure, which turned out to be the first symptom of autoimmune encephalitis.

an excerpt from Sandra Stein's essay, Home is a Medicine Unto Itself

in The Atlantic

One of the abiding positive effects of blogging is the friends I've made, the intense relationships that have developed despite geographic distance. I met Sandra several years ago online when she contacted me after reading my blog, and in the years that followed we've exchanged emails, texts and telephone calls, sharing much of our lives, our hopes, our tribulations and dark senses of humor. Sandra's article in The Atlantic is so beautifully written, and her story -- her son's story -- is one that will take your breath away, as it took mine.

Home is a Medicine Unto Itself

How to honor your child

We knew each other before Aug. 16, 2011, when my perfectly healthy 2-year-old son was overcome by an autoimmune encephalitis. “Was that you the other night?” I asked as he, his wife and their oldest daughter now got out of their double-parked van into the sticky summer air. “Yes,” he replied, “I hadn’t seen you in so long I didn’t recognize you.” Without effort or emotion, I shared the story of our 15-month hospitalization and efforts at navigating our new lives.

The above is an excerpt of a personal essay written by a friend of mine who I met through blogging. It's the second year anniversary of her son's diagnosis, and I can't imagine a more articulate and moving way to honor him.

Read the whole essay here on Motherlode at The New York Times.