Blurry Integrative Eyes

enjoying my little visitor even though I'm "wheelchair bound"Saturday. I had SUCH a great day! For whatever reason I got more than eight hrs of restful sleep and I felt strong. My vocal cords succeeded in touching each other and producing intelligable speech. Though cold it was sunny and everyone was out. On the other hand, everyone was out. It was exhausting to talk to the well-wishers and the don't-know-what-to-sayers. Strolling among able-bodied people makes it very clear how ill I am.

Maybe it's better to be less clear.

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Let's be Negative!

photo by Tsuh YangThis morning I heard yet again a person equate sad and negative, and suggest that someone with negativity (which was actually sadness) had some understandable reason for being so, and deserved compassion therefore. 

Do you pity negativity? 

what about negative ions? negative feedback loops?

what about shabbat? a day of rest.

what about darkness? death.

says the sutra on the Identity of Relative and Absolute:

Light and darkness are a pair, like the foot before and the foot behind in walking.

Be so-called positive if it pleases you but you cannot escape the negative. 

Tumbling toward death
with open arms
one fist, one palm
heart aflutter

November 8, 2021

Dissolution Dharma

I gave a Dharma talk today. Here are the words, spoken by my friends where indicated:

Good morning. My name is Yuuka. I’m a senior student at the Village Zendo and a member of the Sangha. 

I sound like this because my diaphragm and vocal cords have atrophied from ALS, lower motor neuron dominant ALS, a rare variant of a rare disease. So today, my friends will speak my mind. Thank you, Roshi, for allowing and encouraging this accommodation.

clockwise according to textMy name is Fusho; We often start by talking about the weather… [improvise and bow]

My name is  Joren. And we often say how amazing it is to see all of you… [improvise and bow]

My name is Mukei .Sometimes we say something about how we’re feeling… [improvise and bow]

My name is Gessho. Or what’s going on… [improvise and bow]

My name is Kojin. We talk about these things because they are immediate, happening now.  [improvise and bow]

Yuuka Kojin, will you be my voice? [bow] 

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just Hi!

Today I am not crying. Even though I slept only an hour last night, I am not crying. Even though my new home health aide cannot really understand me, I am not crying. Actually, I am shouting, but no one seems to hear or understand what I'm trying to convey.

Maybe it's the sun and the warmth. And maybe, today, it was a little bit fun to propel my chair with my feet.

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What do I know?

photo by Leor MillerToday I am crying. My sky is crying on my tree as I sit inside watching it. I cannot go outside today because I don't have help. I did not know that I would not have help, and so I didn't ask around. I did not know that I would lose the ability to balance and walk. I did not know that I would lose the ability to talk and breathe. I did not know that I would know that I am dying.

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True Expression

Somewhere in my documents is a pronouncement that I'll be ready to die when I can no longer express myself. When I wrote it the line between expression and not seemed more clear to me than it does now. What is expression? What is myself? Zen koans are often simple at the absolute level but entangled at the level of detail.

Sure, I am expressing myself now, but

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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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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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