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

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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I am In Dependent (don't read if you don't cuss)

pic by Leor MillerThis is how I swim now. With the full support of my daughter I can kick like a toddler learning to swim. Except of course I fucking know how to swim. I fucking used to pass the fucking alpha males with their gear and their struts and I was fucking proud! 

Pride comes before a

whoops.

I fell the other day as I

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The Beach: Dependence, and Dolphins

human armchairs, loving familySensible sentences can't convey how it was to be trapped in a house of stairs with no railings, on the beach impossible to access without help, ocean waves subsumed by human construction.

And yet, with help, an experience sublime.

So, a poem.

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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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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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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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Alive and Growing

This morning I tried and failed over and over again to lift branches in a stone vase onto a shelf. I cursed that I couldn't do it alone, and I couldn't bear to wait and ask someone for help. Finally I discovered that if I stand on a yoga block I can raise myself up just enough.

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