Help! no, don't. no, do.

getting helpThis morning my being did back flips when I read this account by a woman with MS of what it is like to be fed. She remembered back when she was a young mother how she escaped her husband and child to shop, then tucked herself into her car and tucked into a big bag of chips and a soda. A happy private binge is not a possibility now, and she must endure humiliation or anger or whatever when people forget to feed her, or produce such a big bite she has to let it fall out of her mouth, or maybe just reveal impatience or awkwardness or reluctance.

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Being Seen

What do you see when you see me now, head drooping, carefully stepping, barely balanced on sticks held by arthritic hands? "Bless you," I've heard, or "good job," or some just smile to show I'm included in this beautiful day. I am accorded that kindness reserved for heroic cripples who might have given up but instead still struggle, still battle, and maybe even overcome obstacles. Thank you.

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Alive and Dying

Imagining my death last week I felt a little thrill, which interested me very much. It wasn't just the possibility of relief, it was a curve of curiosity. Dying might be super cool, alive as I am, dissolving into the One. 

Curious about the thrill, I pursued it, gently lest I scare it away. I let it ring a little as I investigated hospice care and funeral homes, then heard it ringing as I felt the breeze, finally a little cooler in NYC, and as I relaxed in my abode, eyes dancing with the flow of forms I've created or, rather, felt into being. Language has always seemed treacherous to me

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Lists

My right hand is giving out, so I'm practicing parsimony.  

Problems I don't have:

• worrying that I'm too fat. 
• struggling to eat less 

Look, this is not trivial. Countless pages in my lifelong diaries are filled with efforts to shape my body into something lovable. 

sometime in the 80s

Problems I don't have:

• thinking I am not lovable

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Scooch

Defined as: move in or pass through a restricted space.

Adaptation is my dance, always has been. This is how I straighten a carpet.

Had a bit of fun. Made a bit of firm ground. 

Loved my feet. They loved me. 

Today I provided life for a bunch of mosquitoes. 

July 9, 2021

Does Not Apply, or Fall in Love

Spotting a bauble the toddler bursts into action. The detective chasing a bandit bounds up the stairs. A woman late for the train sprints through the closing doors. I see it or I read it and I think, does not apply, but not before I feel myself doing it.

I never realized before how much I imagine motion. Not that I could ever run and jump normally but I still felt the potential of the actions in my body. Now, though, the dis-synchrony has grown sharper and become a koan. Normal life does not apply. Normal expectations have vanished. I can't pretend I will grow stronger, can't motivate myself with a plan of action, can't wait until the illness recedes. There is little in my future that I can reasonably look forward to. Even worse, I don't feel a part of this world. Sometimes I feel a creeping bitter jealousy about the simplest actions, even as I thank, thank, thank all those willing to do for me what I cannot do. 

How do I live then?

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How Healing Happens

Last week I wrote about how trauma makes it harder to empathize because we organize to defend against danger. Then on Sunday at a little gathering at my house a vivid counterpoint blasted through decades of suppressed shame. 

I was wearing my neck brace, unadorned, with a ruffled collar in the style I favor. Several weeks earlier my friends had helped sew a cover for the brace because I felt the silicone brace to be obscene. The problem was that the cover was super hard to put on and take off, so on this day I defiantly left it bare. My daughter's girlfriend, who is a trans woman, whom I had not met before, whom I will call xo, exclaimed, "I like the medical aesthetic." 

What? There is a medical aesthetic? And then we embarked on a lively discussion of prosthetics. It was a bit like coming out.

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Outsider Grief Relief

As my own story of illness and dying takes the focus here, I'm going to retire the page, OGRe Home. But she will not go gentle; she must be heard before she cedes. 

"OGRe Home is a community for Outsider Grief Relief. Grief arises from exclusion. We try to exclude what we cannot accept, but we fail because the unacceptable always pushes its way back in. If we can't accept our weakness or dependency, we diminish our crips and our mothers. If we fear our unbounded sexuality, we punish or mock our queers. Then, we're shocked when the crips and queers take to the streets, or that nice woman of color who was supposed to stay on the other side of town actually marries our sister."

I have long longed to be included and I've carried the idea that those of us who have been excluded can understand and support each other. Now I'm not so sure.

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Including Judgement

Updated on Friday, June 11, 2021 at 5:37PM by Elena Taurke

Last night I went to an online premier for a wicked and brilliant and thrilling dance at the Joyce, Giselle of Loneliness, by Katy Pyle. I urge you to buy a ticket and see the show, streaming through June 23rd. In it, seven queer dancers audition for the role of Giselle by dancing a compressed and extremely difficult sequence from the mad scene. Any one of them would blow your mind, and yet we as audience were asked to judge them according to criteria like Jumps and Extension, but also Ethereal and Hysteria and Suffering. I laughed and scoffed but then got into it. We were given 30 seconds so the judgements had to come fast.

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It's an Athletic Event

I used to say it to my patients/clients when they were sick or had family visits or did overwhelming admin stuff like answer email. It's an athletic event. The idea is to give yourself credit for things that may be commonplace or may be invisible but require a shitload of internal work. The world, the audience, will not cheer you on because they don't know what's going on. But you can. 

ALS is an athletic event. Functioning that was once automatic now has to be skillfully directed by a compassionate sentient attention. Balancing requires making sure that my weight is well distributed on the horizontal planes of my moving foot, and also that my pelvic floor and tailbone are properly compensating for the droop of my head, and also that my eyes are in line with my head even when tiny people or dogs are whipping around my legs or saying "good morning" in that friendly way that I should be grateful for but actually curse. I've thought about wearing a sign around my neck that says, "please, I can't talk, yes it is a beautiful morning, just keep moving and let me concentrate." 

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