Putting on the brakes

I have stomped on the brakes, and stepped into spring break. The lawn is still dotted with pockets of snow, even though the bitter cold has finally broken. I longed for warmth that didn’t involve putting on so many layers I felt like a toddler decked out in a snow suit, unable to move. So the three of us — me, Math Man and his golf clubs — went somewhere warm, driving to the airport in a bubble of early morning fog and mist, by lunch we were having lunch and watching whales breach from a perch on the cliffs in a warm place with cool breezes. Like magic.

No email, I told Math Man. No desire for a mad crazy sightseeing schedule. Beach walks, good meals and rest. I realized by the second day that I had activated my “retreat” mode. Rest, pray, read. Walk. Repeat. Lean into the quiet and the sound of the waves. Float. Take some advice from Ireneus: rest in the hand of God.

When we return there will be 7 weeks left of my teaching career. Then I will be stepping on the brakes again, far more firmly. Eighteen more lectures to give, four more recitation sessions to run. A final exam and on the 5th of May, after the final exam, it’s a wrap. Except for the grading. And the packing. 

Is it a journey or am I spelunking?

 

The term “your Parkinson’s journey” crops up in a lot of the reading I’ve been doing and the podcasts I’ve been listening to as I try to better understand what I am facing. The term felt awkward to me and I couldn’t quite put my finger on why. Then I heard it used to refer to the late Eric Dane’s course of ALS. That is when I realized that journeys are a generally a two-way affair. You go on a journey, only to return home. ALS is not a journey, there is no return to normal, there is only catastrophe ahead. Nor is Parkinson’s a journey. It will progress — slowly, I pray — but it’s not going backwards. So, no, not a journey.

So maybe it’s more like a pilgrimage, I mused. You go somewhere, the going isn’t smooth and along the way you are changed. But even pilgrims go back home, the blisters and galls memories, not ever present realities.

In some ways I feel like a refugee who has been resettled in a place she did not chose, unable to return home. Or like my great-grandmothers who immigrated, never returning home, not even for a short visit. 

Maybe this is an expedition deep inside the earth? I read a piece about veteran coal miners who report that most of the time they crawl through the tunnels they don’t think about the enormous weight that is above them, hundreds, sometimes thousands of feet of rock. But every once in a while, that literally crushing reality asserts itself. Everything could collapse. Most of the time I’m not ruminating on Parkinson’s, but there are moments when I feel the future’s weight, and worry that I might be crushed.

Or maybe it is more like treading water over the Marianas trench, you float, as long as you keep moving just under the surface. It’s exhausting. But there are seven miles of water below you, nothing to stop you from sinking into those depths, so you perforce keep moving.

 

All my cells thirst

“I’m slipping, I’m slipping away
like sand
slipping through fingers. All
my cells
are open, and all
so thirsty. I ache and swell
in a hundred places, but mostly in the middle of my heart.”

— from Rilke's Book of Hours, I 23, translated by Anita Barrows & Joanna Macy

I found this snippet from Rilke's Book of Hours on a literal snippet of paper tucked between two dictionaries on my study shelf (I was looking for my Esperanto and Klingon dictionaries, if you must know). I have no idea where I came upon it, on the back is a photograph of a caterpillar chrysallis and something about undifferentiated cells. No idea, either, when or why I might have clipped it, nor how it had found its way onto that shelf of rarely consulted references (when was the last time I used Klingon?).

Meanwhile, unknown to me, cells in my substantia nigra were slipping away, like sand through an hourglass. Dying. When were a third of them gone?  a half? I didn't know. I didn't notice, until I did. Most of them are now gone, swept away by whatever molecular cleaning crew keeps station in my midbrain. 

I imagine this little spot in my brain, gradually growing dark. The lights flicking off one by one. Meanwhile all my cells thirst for what was being poured out, longing for the messages that once flowed on a tide of dopamine, but no longer come.

I ache, in my body, in my soul...and in my heart...for what I lost, all unknowing. For what I know I will lose again.

---

Estimates are that between 60 and 80% of the dopamine producing cells in the brain are dead by the time symptoms of Parkinson's disease manifest. The substantia nigra is just above the brain stem, deep in the middle of your brain. The tissue that comprises the substantia nigra is darker than the rest of the brain's tissue, hence the name.

Rilke's original German has no reference to cells, but speaks instead of senses thirsting in different ways: “Ich habe auf einmal so viele Sinne, die alle anders durstig sind.”

Layers of protection

 

I pulled open the drawer of the lecture table, to stash a pair of winter gloves someone had left behind so I would have enough room to work with some students during recitation. Clearly I wasn't the first person to have done that, both drawers were full of detritus (including another pair of gloves!).

I could classify the contents as lost, left behind, or just in case.

Lost and left behind: Those gloves. Cables. So many pens and pencils. There was a Zip disk from 2000. "Hey, that looks just like the save icon!" offered one student, looking over my shoulder. I replied it wasn't a replica of the icon, rather this was the physical object from which the icon was derived.  Another remarked dryly, "That disk is from before I was born." Erk. That made me feel nearly ancient. I can clearly remember when Zip disks were state of the art.

The drawer was a trip to another time. A late colleague's notes. Unmarked vials. A vial of pure vanillin (which isn't the familiar caramel color of vanilla, but a white powder.) Pens for writing on overhead transparencies (what are those my TA wondered, while I wondered in turn when I had last used that technology, or a physical slide deck for that matter). 

Just in case: That extra pen for writing on transparencies, batteries (one so old it had burst open) and spare bulbs for the projector. Rulers, periodic tables. Period supplies. Blue books (which are coming back into vogue again thanks to AI) and scratch paper for exams.  

Beloved. Period.

We are beloved.
     Period.
Not beloved because
Not beloved if
Not beloved but
Not beloved for
Not beloved sometimes, by some people. 

We are beloved. No commas, no clauses.
Beloved, period.

We are beloved, as we are,
      as we were even before the spirit breathed upon the waters,
          as we will be when the sun itself returns to dust.
Be loved.

Be love. 

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The parish mission, executive summary. A riff at the end on the Zen koan: "Show me your original face, the face you had before your parents were born.”