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]
[Kojin ]
I think I am dying now. I was told I was dying in the fall of 2019, then told I probably wasn’t, then ended up in the hospital in respiratory failure in the spring of 2020,..didn’t die, so then they said I probably wasn’t going to, but in the fall of 2020 an EMG convinced them that I was. By then I didn’t believe anything the medical establishment had to say.
Over the next year I had to listen to my body for the answer. Am I dying? .. I know what you’re thinking: We’re all dying. True enough, but ALS pushes the question forward, turns it into a living koan that I hope to share with you today.
In the fall of 2020 when they gave me that diagnosis I was angry. The doctor who had, months earlier, enthusiastically pursued other alternatives, just looked sad and defeated. He had nothing to offer. No treatment. No hope.
I’m not a big fan of hope because it spoils the appetite for life itself. So I was surprised to discover the tenacity of hope and how hard it was for me to truly live without it.
I read about what ALS does in the brain and I read the research on alt methods—supplements that juice up the mitochondria and practices that induce neuroplasticity, like Feldenkrais and Farias, and my own creative adaptations of things I had learned from dance and yoga and living with Rheumatoid Arthritis since I was a toddler.
Listening to my body I would hear minuscule improvements, and I would cheer myself on. Oh, it’s getting better! Its not ALS but something like Lyme, or inflammation, or anxiety. I’m conquering this thing in my own inimitable way and I’ll be able to move again, have power again.
In fact, what was happening is that I was adapting without even realizing it. Then the minuscule changes in the other direction would accumulate, and one day I can’t lift my arm and hold a water glass, and I am knocked out by the realization that I am getting worse, not better. Really knocked out. ..Oh I’m dying… I have no future. There is no hope
But then I would get a little better in some way, and then and
the whole cycle repeats.
[Joren]
Until finally I realized this is what dying looks like. I’m not going to transform into some other guy who is going to die. It’s me. It’s this body, this mind, this toe, this eye.
It seems so improbable. I feel so fully alive. I still care about relationships, about politics, about the weather. I still have opinions and preferences. I was hanging out with my daughter, Vita, and she said, “it’s weird. You’re dying but you’re 100% alive, even though you’re so different you are still yourself.” Right, I said, the one I was has died, but here I am, completely alive.
Talking to Ryotan Roshi about this he said you will never die. You might witness death but you won’t die. I understand this as: the you that you think you are will never experience death of itself. Because,…well, think about it…gone…gone…breathe…gone…
Has something died? I mean, I’m not even sure what death is. After the talk today we’ll recite the Heart Sutra. No old age and death and no end to old age and death. No eye ear nose tongue body mind. And we’ll recite these words using, …guess what? …Our eye ear nose tongue body mind.
Long ago I I asked my first zen teacher, Kodo Sensei, What happens when we die? I don’t know, she answered, of course, but I do know that what I am, continues.
So, who or What is actually dying? …
In my case, just a few motor neurons that send messages from my brain to the muscles that support my spinal cord … my diaphragm … my tongue and so on. I ask my head to be upright and it refuses. I ask my vocal cords to close and make a sound, and they say, I need more air for that, and I consult the diaphragm, and it says, sorry but I’m busy trying to breathe. I ask my hand to reach and hold, and it rebukes me and fails, the glass is too heavy, the blanket won’t move; I’m stuck in the bed. And yet somehow I continue to express myself.
[Fusho]
What remains?
There is a Koan in the Mumonkan about a cart. The cart has mighty fancy wheels with some precise number of spokes. And the question: if you take away the wheels and everything else, then what? Vroom vroooom.
What is the essence of this cart? Is it separate from that beautiful wheel? How will it function? Vroom vroom.
Who am I now that I’ve lost so much? I mourn the future I imagined I would have, the enthusiasm I had for my intentions, the pleasure in movement. I’ve lost the ability to identify with people running, walking, talking, falling in love. And most tragically, to me, I’ve lost my independence.
Independence was my super power. Most of you know by now my story of growing up with rheumatoid arthritis, a hospitalization when I was a toddler that taught my body the terror of depending on people who don’t understand me. Well, to add detail…I had been speaking fluently and excessively in Russian, then was hospitalized in an army hospital where they didn’t allow visitors, where they only spoke English. I don’t remember any of this, but my body does. I get the shakes in certain situations that resemble that one. Situations that involve dependence.
So I built my identity on independence and heroic adaptability. I learned to dance with the body I have. I made things instead of bought them. When I couldn’t make it, I bought it and adapted it. Sometimes I said goodbye to people on whom I was dependent.
Now, that identity is gone. Each stage of my Zen ‘progress,’ if there is any such thing, has been accompanied by the realization: Oh! It’s really true!
[Mukei]
Oh! It’s really true! Independence is a fiction! We are all interconnected. We are all dependent, including me. I am dependent on my daughter, on my home health aide, on my wheelchair, on my computer, the internet. On you.
I am dependent on The Ezra Klein Show. A while back, he interviewed Annie Murphy Paul about her book, The Extended Mind, a compilation of research that explores how our environment interacts with our mind. She was inspired by a philosopher named Andy Clark. The first sentence of the New Yorker article about him in 2018:
“Where does the mind end and the world begin?”
Some of the studies that Murphy Paul cites are sloppy, only suggestions, really, but I think the tendencies they describe ring true.
We do the most creative innovative thinking when we’re outside, when we’re moving, when we are in conversation with our whole body—a process called interoception, or when we ‘offload’ our thinking onto tools—white boards or post-its or even software, that then talk to us.
Making gestures improves memory of the things we are gesturing about. And I love this one: running can produce something called transient hypofrontality, that feeling of bliss and oneness that some of us enjoy when the thinking mind finally takes a break.
Digital tools can also contract our minds. Like how a tight focus on a tiny screen amputates our periphery, or how algorithms and marketing can scatter our minds. … like when the popup pops up… What was I saying? I lost track
Something about
Something about how tools shape us as much as we shape them, and how environments change us. Like how we feel, or think, when we’re gazing up at the sky, or a canopy of trees.
‘Soft fascination’ is restorative.
Which reminds me of Shikantaza.
Which is where I got stuck when I was writing this talk.
[Gessho]
It’s as easy to talk about Shikantaza as it is to talk about death. our Soto Zen founder, Dogen, like Uchiyama in Opening the Hand of Thought, spends a lot of time on posture,
which I can no longer replicate. What do I do when my body won’t perform the posture of zazen?
Enkyo Roshi encouraged us last week to use this very body to serve the world. And Howard just kicked off a fantastic series on embodiment.
How do I include this body? How do I include everything, my extensions, my incapacity?
Says Uchiyama: Our life force should be neither stagnant nor stiff.
Think not thinking, says Dogen,
No old age and death and no end to old age and death.
In-between and both and neither. Zen winds crazy advice around our ankles until we trip and fall into life itself.
Your body is your life, dissolving and forming, along with mine. When I say ‘your body?’ where does your attention go? Hover there for a moment and then come inside your breath and notice what it touches. …
Then, touch something outside your body. A bit of fabric, a stone, anything nearby, part of your environment, part of you. Sense your skin responding to the touch, the blood flowing through the tissues, the muscle and bones responding to your mind…
*If you would like to, close your eyes…let your lids fall closed and sense the eyeballs nestled in their sockets. …. for fun, bring a finger to the inside corner of one eye near your nose and then trace the bones of the socket up toward the eyebrow, the outside corner of your eye, the top of your cheekbone, and back to the inside corner…Did you notice where your gaze went?
Try it again and follow your finger with your eye. Go slowly and see if you can move your eye smoothly within its comfy socket.
And now, make the circle but keep your gaze on the dark horizon, sensing the periphery.
When you’re finished, just feel… Are the eyes different now, or the same? …let your eyelids slip open ….
and take in the whole world. Take it in with your eye ear nose tongue body and mind…
We are your periphery. You are mine. The boxes, only an apparition of the tightly focussed mind. The reality is so much more.
Dropping body and mind.
Dropping dropping.
Living forever.
Dying now.
[Yuuka]
And now I’d like to close with a Gatha.
Kojin
Joren
Fusho
Mukei
Gessho
Yuuka
You
*Eye games are a riff on a Feldenkrais lesson by Raz Ori.
October 24, 2021
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Reader Comments (5)
So awed by your thinking and thoughts and mind and so glad you have a channel to express the deepest thoughts and concerns we have. Love you
So much for me to learn from you--C
It makes me cry again.
Only this time, I have a question.
How does this text change when it's all one print voice (you) and when I hear it broken up and shared among Kojin, Joren, Mukhei, Gessho, Fusho?
It is the same, yet not the same. The making this text into a oerfornance for so many voices is a way of seeding your dissolving self in the presence, a bequeathing, a giving the self away.
You. You. You. You. You.
In this masterfully crafted talk I have met a Zen master: radiant, vibrant and unapologetically alive. You have my gratitude and admiration.
You seem so deeply present, as you describe the state of leaving. Is it looking back through the door that now frames life, that it now somehow seems more clear and vibrant? Is it nostalgia for what you still have? Mourning for what you don't have anymore? Thank you so much for sharing your evolving and unique perspective on universal realities. Thanks for sharing your 100% even as you feel the tide sliding out. Thanks for being here with us, and for allowing us to be with the being you are. I like being in your presence. love, Kev