Showing posts with label equanimity. Show all posts
Showing posts with label equanimity. Show all posts

Monday, March 30, 2020

We Can Do Hard Things, Monday 3/30/20



to Chris Rice


Some of you have asked -- my boy Henry is up in Washington. He lives off campus with a few friends and is doing "school" virtually. I understand from both boys that school is really just "school," that they don't feel they're actually learning and that it's all bullshit and boring. I hear the word boring a lot, and to tell you the truth, I feel grateful that they're bored. At least for now, because who knows what sort of long-term effects this strange, strange time will have on them, our youth, our hope, our future?

I miss Henry.

Sophie just had a huge seizure that rattled me. I'm still capable of being rattled despite being tens of thousands of seizures in. Epilepsy really sucks. When will this be over? Never.

I read an article by Aisha S. Ahmad titled "Why You Should Ignore All That Coronavirus Productivity" that was published in the Chronicle of Higher Education. The writer says:
Yet as someone who has experience with crises around the world, what I see behind this scramble for productivity is a perilous assumption. The answer to the question everyone is asking — "When will this be over?" — is simple and obvious, yet terribly hard to accept. The answer is never.

It's not depressing, though. It's very wise, and what it did for me was to affirm what I already know, have already experienced yet willfully forget or bury or don't have the time to remember. What I already know is that I can do hard things. I know this hard thing is like no other hard thing in its scale, so I won't use the word but. It's not about me. What I can offer, though, is my tiny little mother mind™ -- remember that? I do. It's the part of me that was left after Sophie was diagnosed on June 14th, 1995. The rest of me came before that. People are used to things being recoverable, and we live in a culture -- whether religious or not -- that makes faith and hope virtues in what to me is a weird way. Some things are just not recoverable. They are irrevocable. I drove to Ralph's grocery store yesterday, wearing a mask and gloves. I have tried to limit myself from any of the shopping, but I really needed to see what was there because I'm the one planning and making the meals. I parked my car and stood in a long line that snaked behind the building, each person standing six feet from the next. We were let in one at a time, in small groups, and we shopped that way, too. Everyone is shopping that way. My eyes filled up with tears and my mask and warm breath made them fog up so I couldn't see. A long time ago, I was driving my three young children around the shitty from one of Sophie's various therapies or something. I'd gone through the drive-through of In N Out to get some french fries for them. Oliver was an infant, facing backwards, but Henry was three years old and sat in a car seat next to Sophie who was also in a car seat. Henry fed Sophie french fries, one at a time, cheerfully. Cheerfully. Or matter of factly. Matter of factly. I glanced up in the rearview mirror and teared up. The words It will never be normal for them rose up in a snaky cartoon-like bubble, filling the entire back seat. Irrevocable. I think that's why we cry. We are sad for things irrevocable.


I was talking about this with my friend Chris, who is no stranger to things irrevocable, to apocalyptic experiences, who is wise and like a big sister to me. We also know that we can feel joy anyway, live anyway, I said. She agreed. And that my friend is the ultimate example of holding two seemingly disparate ideas in one's mind at the same time and still being able to function. 

I can do hard things. You can do hard things. We can do hard things.


...be slow. Let this distract you. Let it change how you thinnk and how you see the world. Because the world is our work. And so, may this tragedy tear down all our faulty assumptions and give us the courage of bold new ideas. 
Aisha Ahmad

Wednesday, May 1, 2019

Thinking About Things, Things About Thinking

Homemade gift from Lauren, Sophie's aide


This morning I was in my Barbie bathroom brushing my teeth with my Goby toothbrush (it says, Get Your Buzz On and came in a pink-lined fancy box with free shipping on automatic head replacements every three months) and I was thinking about how absurd it all is, living paycheck to paycheck, the products we buy (I say we meaning we Americans, we consumers, we capitalists, and if that's not you go with me for a moment) how lazy we are, how complacent -- even in the face of calamity. Calamity being the personal as well as the communal. Towelettes to wipe your privates are folded neatly in foil packets with pictures of flowers, small ones for on the go and larger ones. Summers Eve replaced by a more politically correct plain cream box with simple black lettering Body Cloth. Convenience. Attachment. The word straw. Drawing straws, disposing straws, straws showing up in just one damn turtle, someone said. Gimme a break. I'm thinking about equanimity, about holding two opposing thoughts or feelings or states of being at once without losing your shit, losing your mind. I'm thinking about calm and I'm thinking about action, how caring for Sophie for so long, so long has honed my mind my capacities my equanimity to a point so sharp it pierces through thick the veil protecting all of it my heart. We can be calm. We can still act. We can still be calm. We can act.

Saturday, August 20, 2016

My Tango With The Dark Side



Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.

Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.

How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust? 

When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.

If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.

Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl. 

I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.

It's amazing how terror dissipates when it's acknowledged, when I don't push it away.

Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.

Her small body may not take these bad days. She may die.






The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.



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