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Dementia and The Mother Of Us All

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Good morning.  Welcome to an extended analogy.


Her number rings and rings and rings and rings.  I call the switchboard, punch my way through the circuitry, get to the main desk in her ward, ask someone to go and check on her.  "Please see if her phone is where she can reach it."

Five minutes later she picks up, and I say, "Hi!  It's your son Warren, and I'm calling to find out how you're doing, and how your day has been."

For a few seconds it's all fine.  She sounds just like she's always sounded, her voice dry, articulate, assured.  "Well, hello, Warren.  I'm fine.  I'm pretty sure I'm on the fourth floor of the hospital."

She's on the ground floor.  There is no fourth floor.  It's a nursing home, not a hospital.  I don't try and correct her, because it won't help.  She'll just get angry and hang up.


We’ve been aware of Mom's deterioration for a fairly long time as these things go — about ten years.  She was 85 and we were on vacation with her at a little rented cottage on Cape Cod.

She started forgetting things — words, phrases, connections.  At first she disguised it well, backfilling omissions, creating narrative links between two disjunct stories.  I figured those were just somewhat more powerful versions of the “Senior Moments” that all of us have once we reach a certain age.

But Mom's didn't stop.  They got worse, and she started to have more obvious problems.  Falls.  Wandering.  Her doctor called the DMV and got her license suspended after a few bad moments behind the wheel — a huge relief.

Protein deposits developed in her brain.  She began having hallucinations.  Her internal rhythms were upset, and her sense of time got really elastic.  Her responses to stimuli were...off.  You could ask her a question and the answer you got would be the answer to some other question entirely, or something that wasn't really an answer at all.

We took her for a neuropsychological exam.  A few weeks later we got the result.  She had a condition called Lewy-Body Dementia, and there wasn't anything anyone could do.  The doctor tried giving her an oxygen machine to wear while she slept, but she hated it, and finally said, "It's MY brain, god damn it, and if I want to let it go, that's my prerogative."


We've known about climate change and the greenhouse effect for a long time as these things go.

Scientists have studied Earth's climate and the way it has behaved in predictable ways over the span of recorded history, and (thanks to tremendously sophisticated analytical tools) over that of geologic time.  The climate is Earth’s “memory” of how the seasons and cycles interact over time.  Recently that planetary memory has been disrupted.  

In the summer of 1967, there was a “Congress on the Dialectics of Liberation in London.” R.D. Laing, Stokely Carmichael, Allen Ginsberg, Herbert Marcuse, Emmett Grogan, etc. were among the luminaries present.

Ginsberg subsequently wrote to Gary Snyder, telling him that Gregory Bateson, "...spoke of something called 'the greenhouse effect.' Humankind's large-scale burning of fossil fuels threatened a change in the earth's climate, a melting of the polar ice caps, and a rising of sea levels worldwide....'— a general lemmings situation,'" (from "Runaway: Gregory Bateson, the Double Bind, and the Rise of Ecological Consciousness,"Anthony Chaney, 2017).

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Enco eventually turned into EXXON.  This ad is from 1962.

It was around the same time that scientists at the big oil companies began telling their employers that continued consumption of their product — the compressed, liquefied, petrified, extracted, refined ancient sunlight of hundreds of millennia — was going to change the atmosphere, and endanger the systems of human civilization, by the end of the century.

The Big Oil companies told themselves that it was their oil, god damn it, and if they wanted to sell it and let us burn it up, that was their prerogative.


My mother used to be a wonderful conversationalist.  Her students loved her, kept in touch with her for decades after attending her classes, called her and wrote her to ask questions, seek advice, continue learning.  She loved to recite poetry and could rattle off long stretches of verse from memory; the phrases were part of her ordinary speech, and it made her eloquent.

Lewy-Body Dementia means my conversations with her are unpredictable and frustrating.


Every living thing is part of a dialogue with the land.  A garden is a “conversation” with soil, bugs, worms, bees, sun, rain, roots.  To plant a seed, walk in a meadow, climb a mountain —is to ask a question; to pluck a ripe tomato, harvest a field of wheat, be delighted by a birdsong or drenched by a sudden shower —is to receive an answer.  Our world has given us of her plenty, and we've found beautiful tastes and smells and sights and sounds as she's responded to our inquiries.  

The Greenhouse Effect means our conversations with Earth are increasingly unpredictable and frustrating.


Sometimes Mom starts a sentence and midway through, it turns into another sentence.  A word morphs into another word with a shared syllable.  The coherence of her thought is broken up, with bits and pieces of workable phrases floating around, sometimes rejoining one another fortuitously but more often crumbling around the edges, shattering, dwindling — kinda like sea ice breaking up.  You can't communicate if you can't predict at least some part of what the other person's going to say.


Some days the weather seems like it's gonna do something, and midway through it turns into something else.  Sudden temperature changes, increases or decreases in precipitation, sometimes fortuitously matching our history-formed expectations, but more often just losing coherence.  You can't live on Earth if you can't predict at least some part of what the planet's going to do.


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I’m currently on Week 206 of daily vigils.  Visit me if you like.

Every weekday I get up in the morning, make a cup of coffee and put it in a travel mug, and stand by the roadside near my home in Medford, Massachusetts, and sing — while holding my signs, facing the traffic, facing North, facing the truth.  When an hour is up, I head inside, write up the morning in my Man With Sign facebook page, and go on with my day: music students, housework, music practice by myself, music with my family, walking the dog. 


My mother's ravaged brain allows her moments of clarity.  We talk; occasionally she'll surface, asking, "Where am I?  Why am I here?"

And I respond, "You have an organic condition called Lewy-Body dementia that makes you lose your memories of what's happened to you."

She thinks for a second and then asks,"Have we had this conversation before?"

"Yes, mom.  We have."

"And I don't remember it?"

"No."

"Oh.  That makes me very sad." She brightens, says — with a touch of her old humor —"But I won't remember this conversation, either, will I?"


It's a beautiful day outside.  The sun shines warm through the crystalline blue sky; a light breeze cools my skin as Holly The Poodle moves down the street.  It feels good to stretch my legs.  On such a day it is hard to believe that the world as I know it is falling to pieces.

I take Holly to visit Mom.  She jumps up on the bed, bends towards her Grandma, gives her an exuberant poodle kiss on the cheek.  When you’re with a dog it makes no difference whether you have dementia or not.  Smiles all around.  Watching, it's hard to believe that the Mother I knew is falling to pieces.


Thank you for sticking with me.  

My mother will never recover.  There is nothing medical science can do for Lewy-Body Dementia.  My mom will get worse and worse, more and more disconnected.  Eventually she won’t be there anymore.

This is where the analogy breaks down.

Because medical science and climate science aren't the same.  

Because human beings are capable of incredible things — when we've exhausted all the other alternatives.  

Because we don’t know what we’re capable of if we all work together.

I'm standing on the roadside, doing civil disobedience, demonstrating, hosting benefit concerts, and everything else, because god damn it, I may not have any hope left for my Mom, but maybe —just maybe—  changing the conversation on climate change might —just might— do something for Ours.

LoveYourMother.jpg
Hope isn’t something you feel.  It’s something you do.


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