saying goodbye

There is so much I cannot do--speak, write, move as I want to. And to breathe without the support of the bipap machine is labor unimaginable before all this. So much of All This is unimaginable. 

How do I say goodbye, never to return? Before this, my goodbyes were paired with an imagined future. Now, my mind full of memories of capacity, I strive to recognize this new self as myself, never to recover what I didn't appreciate enough, never to 'feel better.' Abandon Hope, I used to like to say, with grand jocularity, gesturing at the freedom a Buddhist master embedded in that phrase. Now it is a deadly serious mantra that snaps me out of reverie and back to Just This. 

Most excruciating is the idea of saying goodbye to my daughter. I don't think I can do it. I realized this morning that another goodbye has to come first. My body needs attention before I can part from her. From you.

Goodbye, dear feet. The left, with its hammer toe and neuroma. Before the neuroma you were my better turning foot. The right, perfection except for the tiny second toe, which is supposed to signify something but I forgot what. The arches, so lovely, either because of heredity or early experience with ballet, never realized as a skill due to my being special, as they said back in something grade. 

Goodbye, knees; amazing how I never had to replace you despite all the trauma you suffered from childhood RA (rheumatoid arthritis). The right hip, not so lucky, now a cyber hip that I love even more. Goodbye wrists, fused since my twenties, and the elbows and fingers that valiantly did their work. "You're as old as your spine," I once heard in a yoga class. My dear neck, at its tip, once elegant, now bowed in helpless submission. Goodbye.

And of course, goodbye, diaphragm. We tried, you and my pelvic floor, we and my throat, humming and talking until we couldn't anymore. Untalking, this mind can't quite touch the others. Thoughts linger, then fade away, neither supported nor challenged. Goodbye, mind; without you I am nothing. And everything. 

I love you more than infinity, my daughter and I still say to each other, mathematical impossibility becoming a stalwart koan that tells the truth of continuity. 

All of you, dear you, thank you for being part of my life, for being my limbs and guts and heart and mind. We are never separate. 

Fare thee well.*

April 11, 2022

*I'm still alive but likely unable to continue writing. 

What is Zazen?

Back when I used to teach "Learn to Meditate" at the Village Zendo I would joke about the paradox of Zen Master Dogen's intructions. Since the Way is perfectly pervasive, why even practice? "The Way is never separated from where we are now." Alas, "if there is the slightest deviation, you will be as far from the Way as heaven is from earth." And then he lays out detailed instructions on how to sit--arrange your cushions thus, cross your legs like so, line up your nose with your navel, and on and on. Zazen is seated mind, so how you sit affects your mind. 

What is my zazen when I can't sit upright? I ask my teacher and he tells about how he's sometimes sitting in a chair and sometimes sitting on a cushion. We agree that will be my koan for the next week. When it comes I answer:

"OW!"

People think zen is about achieving some state of mind. Not so. Don't be a zen zombie telling everyone else to chill out.

Think of not thinking, Dogen says, but that doesn't mean your mind is blank.  

Include everything, I say to myself and to anyone who will listen.

Someone asked if I am depressed, or assumed I was. I am not. I am full of feeling. I am empty, changing every instant. I love life and I am extraordinarily uncomfortable. 

Zazen is as impossible to define as life itself, and yet it is possible to practice in such a way that life pours through you, that change is allowed to happen, that you create a new world with every breath. 

March 23, 2022

Sprung

Today is our Urban Sesshin, plus it's gorgeous outside, so I'm just here to say I'm still here. 

A Good Day!

You asked me, do I have any. Do I have any good days? What is a good day for me?

I've spent much of my life allowing, accepting, transforming 'badness,' railing against gratitude, for example, and relishing complaints and icky feelings. But all along I was secretly happy. I still am. a lot.

I used to rush from one thing to another. Now everything is in slow motion. I used to accomplish a great deal but it never felt like enough. Now, when my bed covers feel like sand bags and taking a shower requires a half hour to rest and recover, when making a matcha latté is an absurd pinnacle; now I sure do appreciate my accomplishments.

This week in my complaint group we talked about how we are seen. What if people we care about treat us with contempt? Do we hit back? Do we rise above? How do we digest and transform the humiliation? For us, as zen practitioners, the questions inevitably draw us closer to dropping our attachment to the illusion of a separate and dignified self. My dignity is gone gone gone. What's left is the one who sees, who feels, who experiences the weird and beautiful sounds of birds on a snowy day, who tastes that latté along with the flour-less chocolate cake my daughter brought me, who enjoys the buzz, the foam.

Experience itself is good. In that way, every day is a good day, as people (Yun Men for example) like to say*. If I don't compare to what was or what could have been or what you can do, then I'm good. But if you tell me I should feel good, I won't. It's a complementarity, a push and pull that is a feature of all systems.

So for me, my days are easier when I can be safe from that tug. I've always needed a lot of time alone to extract myself from interactions. Now I need so much help that some of that needs to be done in the company of others. What helps the most is being able to sit together quietly, to meditate, to be alone together. That is good. It doesn't have to be easy or even pleasant, but when we sit together and the whole vast universe is available, then...well, just try it.

Have a day!

*the link is to a wonderful essay on Ground Hog Day by my friend, Taylor, in Tricycle Magazine.

February 2, 2022

Am I a Freak?

I mean in the traditional sense, not the fashionable one. I mean, why is it so hard to understand me? Why do I keep bumping up against expectations, defying them, even when I long to belong? 

I smile at a neighbor. They ask if I'm feeling better. NO, I say, irritated now. Why can't I be polite?

A friend suggests that I have as much good as possible, specifically to forgive a very recent deep wound. Oh? Well, even if I was on my way, now I burn with bitterness. Why can't I be like

Thich Nhat Hanh, who was kind even to enemies, or

Martin Luther King Jr., who was forcefully non violent, even when provoked, or

oh, choose any saint or hero. I am not That. Nor am I normative. 

Some people are afraid of me, of my emotions, and that causes me to hate myself. I was drawn to theatre, that fictional space where you get permission to live with full intensity. I was drawn to psychology, where I learned that even people who look normal have a remarkable inner life full of stuff I recognize as my own. 

I like foam. beer foam. oatmilk barista foam.

I like the drama of a changing stormy sky. 

Someone I see nearly every day bids me stay well when she leaves. But I'm not. You too, I seethe.

Am I really so much more bothered by ordinary misunderstandings than most people? or am I just too insistent on voicing my complaints? Last year I started a zen zoom group called Complaint Company, where the instruction is to lean into what bothers you. It's fun and tragic and moving, and pretty popular. But not everyone loves it and at least once someone says I'm gonna break the rules and be grateful, or some such thing. 

From Thich Nhat Hanh's famous poem: Please Call Me By My True Names

I am the child in Uganda, all skin and bones,
my legs as thin as bamboo sticks.
And I am the arms merchant,
selling deadly weapons to Uganda.

He advocates compassion and a loving heart, and he is the arms merchant.

This morning, after our daily meditation at the Zendo, our host commmented on anger, sorrow, something good I can't remember (see, see?), and frustration, and bid us meet All That with strength and wisdom. That I can strive to do.

Am I a freak? No, except in the fashionable sense.

January 26, 2022

Fragments

my sky my body. belated winter solstice, a birthday"It's a funny sort of thing," they like to say in Feldenkrais classes when noticing how one thing subtly relates to another.

When I can't have a proper conversation my mind fragments. Here are some shards that have lingered here and in the draft folder in my mind:

No I don't want to see Nicole Kidman's frozen face attempt to perform Lucille Ball. I don't want to read about her process, no matter how popular The NYTimes tells me it is. I don't want to see her picture and I don't really want anyone else to enjoy it either.

ok, no, I realize she is a victim, not just a perpetrator of our vacant plastic aesthetic.

Click to read more ...

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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Adaptation

A dear friend innovated to help me participate with power in social engagements. It's hard to get attention when I can't speak. It's hard to be understood when I can't speak. It's hard to get the help I need, hard not to feel alone, hard to shine. But when people really tune in, I am touched. I don't mean that I feel moved, or maybe I do, but what I mean, physically, is that there is contact. 

The world I live in now is unique, and I don't have company in it. I am adapting in crazy ways, unusual ways. You could say that my adaptations are me. 

As I write this the sun is suddenly brandishing its light and the clouds are making room, their edges glowing responsively. Sky makes an appearance after a morning of gray. Each is adapting to the other. My body responds to the change.

I had fun flashing my cards and it made me feel a bit bossy, something that I rarely feel nowadays. My friends were adapting to my limitations, keeping me company in this unique world. This is love.

November 15, 2021

on a roll

I visited my grave on Monday, then lost my voice.

Even though I can only whisper, I can still move along.

it's only 7 seconds and, personally, I find it funny. still entertaining! 

October 29, 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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