at least...

there is no good reason for this picture of me as a happy kid in flippers. still, here it is. at least you know what is going on... no I don't. This is supposedly a kind of ALS but no one knows the etiology, the mechanism or the cure for ALS. And Progressive Muscle Atrophy is even more rare, so even less studied. 

at least now you know you weren't crazy... I didn't think I was crazy. Did you?

at least now your symptoms make sense... yes, that's a little closer but, as David Byrne said, Stop Making Sense.

Diagnosis does not always confer coherence. In fact, in my experience it rarely does. It's an effort to put a boundary around things that always bleed into each other. But the intersectionality of the body does not succumb to a dose of diagnosis. 

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Justice. And beauty.

Yesterday I got the vaccine. I qualified as a health care worker even though I am no longer working. I didn't qualify as a person with ALS who was hospitalized for respiratory failure. I was ecstatic, triumphant that I could wobble over there, talk when needed, follow the directions. My arm hurt. Later I listened to a smart Dharma talk by a friend who challenged the unfair distribution of vaccines; he cited Singer, who famously advocated killing disabled babies. How do we know what is just?

I'm breathing sandalwood,

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Closer

It's a toss up today, whether to rant about unhelpful things people say or share my process of coming closer. Aha, I see my title points to the latter, although I will mention that my love of complaining gave birth to a dynamite support group called Complaint Company. I highly recommend at least a lightning round of everything negative. Anyhoo...

Closer but a long way from where I think I should be. Closer but exactly in the only place I can be. Closer and closer to my goal as I define it. My thoracic spine has collapsed. My bones are severely osteoporotic and my lats and lower traps and intercostals are atrophied. So when I try to raise my arms or lift something or even breathe deeply, my spine bends to try to accomplish the task,

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Death Porn

Yes, I'll be pole dancing with the pillar of death, stripping down to my soul, dangling my scraps of life as they fall away. And you can watch.

So I looked up Pillar of Death, because, what the f*ck am I talking about? and before long I stumbled on a video of a twin meeting his twin for the first time. I cried. yes indeed. I will never have that experience and yet I felt it as if it were mine. It has nothing to do with pillars (even though there is some kind of game that features pillars of death), but emo is emo. 

Recently I saw a wonderful flick called The Forty Year Old Version, about a brilliant and under-appreciated Black playwright.

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Life Worth Living

Progressive Muscle Atrophy is what they say I have, a variant of ALS with a less predictable course, and what I feel is that it takes huge effort to breathe and cope with the pull of gravity. My spine wants to collapse, curve, curl up and rest. And yet I notice that when I activate my muscles gently, with full attention and entire ease, they respond a little. They do hear me. 

It's such hard work. So I ask myself, why do it? What makes this particular life worth living? I am not particularly struggling with the popular question of what good am I. It's true that I don't seem to be of much use. This week I finally told all my clients/patients that I won't be back to work, and that hurt.

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Who Was She? Part Two

My mother died on February 17th.

In recent years I called her Mum as a repair for the awkwardness in my youth that arose from obeying my father’s insistence that we call her Mother. This stilted salutation, I believe, was to repair the fall from aristocracy that our family suffered by leaving Russia. The proper word really would have been Mama but it didn’t stick, maybe because we were repairing our Russianness too. So much brokenness, never spoken but always implied.

Who was my mother? Who are any of us under all those repairs?

While I was mourning her loss, my Zen teacher, Roshi Joshin, asked if there was an image of her that came to mind, a way that I could sense her presence now. I thought of a butterfly, then changed my mind because butterflies land on things, and my impression of her was that she never really landed. "Perhaps a hummingbird," said my daughter. Perhaps. All I know is that I couldn’t reach her, couldn’t touch her. Or I couldn’t get her to reach me. I’m not sure what the difference is.

Later I realized that she saw me as a butterfly. And when I saw one several days later, seeming to call for my attention at the window, I realized that she was present in the way I see myself. In fact, my first memory is of a blue butterfly crushed by my brother. Maybe I expressed it to my mother. Or maybe I constructed it from things she said. Anyway she wrote a poem called "Blue Butterfly" for my 50th birthday. It memorializes the time when a photographer asked to use my picture in an ad, then saw that my legs were in casts and I could not walk. Here’s an excerpt:

Here was a spotlight on the indifference around, the dismay of a mother,
the trust of a child, and her innocent faith that she would be well,
made so by the grown-ups who loved her. With a turn of the prism,

our powerlessness was bared in the glare. A slight twist cast a softer
yet lucid light on the sweetness of innocence that, much too soon,
would be lost. 

Yet another refraction made blaze the pain that awaited
in the tomorrows, no matter our will or resolve. In the midst of this spin,
there she sat, my blue butterfly, tranquil still in the moment.
Time enough later to learn of the future and change. 

Refractions upon refractions. Reading her poem now, I understand that my illness (JRA) destroyed her idea of innocence and beauty, and there she was, spinning, while I sat, tranquil still. Of course I had no choice; I couldn’t get up and walk, could I?  And this, in a nutshell, produced my lifelong struggle. She was moving so fast I couldn’t sense her center. I felt like I needed to move faster but I couldn’t. The frustration was immense. When I expressed it, they called it rage. And then it became rage. Such is the tragedy of interconnection, healed somewhat by poetry belated. 

The 9th Zen precept is classically translated as "not being angry." I remembered that the Zen Peacemaker version was something like 'transform suffering into wisdom,' but when I went to look it up, it had changed! Now it is "bearing witness to emotions that arise."

Oh, if only someone had been able to bear witness then! How different our lives could have been if she had been able to bear witness to her dismay and grief instead of trying to escape it; how different had I realized that brokenness is part of the nature of things, to be included, not rejected. What if the photographer had chosen to feature the disabled girl? How different the perceptions of all those consumers of culture, how different our understandings of each other! 

Thankfully the world is trying to change. Thankfully I have access to this wisdom now as I heal and accept my body as it is. I just listened to an On Being podcast with Resmaa Menakem on healing racial trauma through awareness of the body and an understanding of the context of trauma. And our own Village Zendo featured a talk by Tokuyu Hoshi on brokenness. And yesterday I watched a conversation on Disability Justice sponsored by Dance NYC on Facebook. We are bearing witness. We are acting. We are healing. 

was me not you 
I thought
I knew
butterfly adieu
now who? 

Related: Who Was She? Part One

June 18, 2020

On Limits

Dharma Talk June 30On Super Gay Pride Day, June 30th, the weekend of the 50th anniversary of the Stonewall uprising, I gave a talk on limits. I've decided to post the whole transcript as well as the link to the talk, just in case you want to hear my personal story and the story of several female Buddhist ancestors, two of them disabled. 

I'm posting the transcript, in its talky format, to save myself time editing. Why? Time limits.

For those of you who don't want to read, I begin by asking, What is a limit? and talk about what we are not able or not allowed to do, how that starts a process of adaptation that can be mutual. We can adapt to the culture and the culture can adapt to us. I use examples to show the complexity of navigation. How do we know whether to sit through pain or change positions? And I conclude with a sweeping generalization: Limit is the answer to limit. We limit our reactions to release us from limited thinking. Our practice of sitting zazen, subtle and mysterious, is a radical act, especially now in the face of weaponized distraction and scapegoating.

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On Feldenkrais

Sure there are the miracles.  Walking along one day you realize the knee twinge is no longer part of your experience.  Or the neck doesn't lock, or the electric toe is at peace. 

But the most profound effect of Feldenkrais method is pleasure. The practice of trying things, sensing what connects with what, what makes what move, and finding ease in All That is really so much fun.  I remember noticing my young daughter's attitude when she was playing: what happens when I do this?  

It is still possible to play, to engage in discovery, like figuring out how to roll like a baby or lift your neck as if it is the first time. It isn't always easy, especially if you are old, or grew up with disabillity, or both. Feldenkrais technique aims to disrupt compulsive action, or habit. In most Awareness Through Movement lessons, the teacher introduces a wierd counterintuitive thing like moving your eyes in the opposite direction of your head. Oddly, after doing such a thing, all of this spaciousness sprouts, and then there is freedom of movement where there wasn't before.  

Of course doing this again and again provides direction and practice for the mind. When I encounter something really hard, I try switching things up, like the antidote to the oft-quoted notion that insanity is doing the same thing and expecting different results. Just do something different.  See how it goes. If you don't like it, try something else.  

I think this is all tied in to listening, to improvisation, to letting go.  What comes next?

September 2017

And, Rest!

Oops. I forgot the most important thing.

In my enthusiasm to Reckon, Refuse, and Respond, I neglected to include what makes it all possible: Rest.

Rest is what enables us to listen deeply to what is true, and Refuse what is false. Rest is what enables us to think clearly and Reckon with this political disaster. Rest is what gives us the energy to Respond in an effective way. Rest is what Donald Trump never does.

It is easy for me to get confused on this point. Growing up as a weakling with a disability I needed drive to keep me from collapsing into something that I understood I could not get out of. It served me well back then. When I couldn’t achieve popularity I studied hard and excelled academically. Later I studied popularity and achieved some. And along the way I pushed and pushed my body--to dance, to stretch, to keep going no matter what.

It’s taken me a very long time to understand that there is a whole other aspect of living that cannot be comprehended in the drive mode. Sitting zazen (meditation) certainly makes it clear, injuries make it clear, mistakes make it clear. Tasting creativity pulls me toward that aspect. In Feldenkrais practice there are these oft repeated messages:  Do less. Find a way to do it without strain. Let go of effort. Try it and see. And then after a series of strange movements:  Leave it alone and rest!

Oh, that.

The confusion comes when I’m doing something important, and something in me tells me it can’t be done or it is wrong or something like that. I then feel fear that I won’t be able to do it, so I start to push. But I don’t have the energy and I feel resistance, so I push harder, drink coffee, can’t sleep, have less energy, drink more coffee, don’t feel what I want to feel, push harder… You get the idea. It's a cycle.

Rehearsals for Fountain of Oldth have been alive and interesting. But when we decided to have an open rehearsal it became all about transitions and cues, ‘running through’ the whole show, getting feedback. It felt wrong to me, and that’s when I started pushing. The open rehearsal wasn’t a big failure or anything but it triggered a pretty serious relapse of chronic insomnia. And that’s when I remembered this. Rest. Listen. Follow the thing that matters, not just the thing that calls out most loudly for attention.

I'm doing my best to keep up with letter writing, petition signing, protesting with community, but I also want to bring attention to the deeper things, the things that made all this happen, like misogyny in the form of contempt for vulnerability. I want to stand up for vulnerability in all its forms--getting old, being a woman, being disabled, being poor. And that doesn’t just mean fighting for rights. It also means breathing into that soft underbelly and listening to the birds, for example, or really taking in the sight of the bright new buds sprouting everywhere now.

And then, sprout. 

 

 

 

Yes, Doctor. May I see your computer?

It started out well enough.  The pain specialist in the spine department--let's call him Dim--was friendly and respectful, and did a quick and gentle exam of my neck.  Then he brought me into his office, offered a seat while he communicated with his computer as he complained that electronic medical records were ruining his practice.  I sympathized; he continued on about how this keeps him up at night, then asked me many questions that had nothing to do with my neck, presumably required by the machine he was facing.

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