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. 

---

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.”

Jarred silence

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— TinyTalesDaily (@tinytalesdaily.bsky.social) February 12, 2026 at 9:01 AM

I am, you anxious one.
Don’t you sense me, ready to break
into being at your touch? 
My murmurings surround you like shadowy wings. 
Can’t you see me standing before you cloaked in stillness?
...And with the silence of stars I enfold your cities made by time.”
— Rainer Marie Rilke

from Rilke's Book of Hours translated by Anita Barrows and Joanna Macy

I used to dive into the silence once a month at the Jesuit Center near Wernersville and perhaps a bit tongue in cheek, would offer to bring back a bit of the silence for friends. I have been thinking about how to package up silence recently. Or rather, contemplating how to open a space for stillness and silence for those who are seeking it. What would it look like to set up that sort of portal in the parish church for an hour? What could you give people to take home...if not in a jar, but a gift of a way of drawing that cloak of silence and stillness around themselves if only for a few minutes?

It is so tempting to try to push lots of advice in, but I keep returning to Abba Moses advice, "Sit in your cell, and your cell will teach you everything." Or to riff on Mary Vorse's advice to young writers (including  Sinclair Lewis) “The art of writing is the art of applying the seat of the pants to the seat of the chair.”: to sit in prayer is simply to apply the seat of the pants to the seat of the chair. I don't want to constrain prayer.

As to the jars in the TinyTale, I am with Marty Laird OSA (Into the Silent Land) on the notion that contemplation will somehow erase the woundedness we experience. Opening that jar of permanent silence isn't necessarily going to hush the screams in the other jar she bought. Prayer is not snorting lines of euphoric peace, warns Fr. Laird.

Tied up in knots

It was an 18 hour drive from where we lived outside Chicago to the small Long Island town where my mom had grown up. Once or twice a year we would leave after school and my dad would drive all night. (I know, I can’t imagine how he did that.) It was quite an adventure, I remember waking in the night to see a sign on the Pennsylvania Turnpike for Valley Forge. I would imagine the winter encampment, wonder what it looked like now. (And now I live a short distance away from that exit. Also funny to realized I have no memories at all of the 18 hour drives back to Illinois, which we surely must have done at night as well to minimize the kid boredom and resultant chaos.)  

The bakery on Long Island was close enough to walk to from my grandparent’s house. There were sidewalks! For a girl from rural Illinois (no sidewalks, no shops within walking or biking distance) it was exciting to have such independence. My dad loved the poppy seeded hard rolls from the bakery with his coffee in the morning, fetched fresh each day. When we moved to California, too far for even such infrequent visits, my dad began to try to duplicate the rolls at home. My grandfather would taste test when he came to visit (easier to transfer one elderly parent by plane from East Coast to West than six kids and a dog in Volkswagen van.) He finally settled on a recipe that matched his memories (and got my grandfather’s seal of approval as well). 

When I would visit he would make a batch, timed so they’d just be coming out of the oven when I walked in the door. To be eaten hot, with butter. My dad died in 2019, but the rolls live on. The third generation (both Crash and Math Guy) learned from my dad how to tell when the dough was just right, how to tie the dough into knots and how much egg wash to use to get the right color and those poppy seeds to stick.

A few weeks ago, during the snow storm that left us snow covered and encased in ice (it’s been 3 weeks and the back yard is still under several inches of snow) I made a batch of braised short ribs and my dad’s hard rolls, It was the first time I had tried them since Parkinson’s symptoms had become evident. My head remembers how to tie the knots, but my hands had a hard time complying. A subtle reminder that Parkinson’s always lurks under the surface, the medications only (mostly) mask the symptoms. I eventually got a dozen rolls onto the sheet, and baked. They were not perfect, but they were wonderful, hot from the oven, redolent of yeast and memory.

A Terrific, Delightful, Good, Not Bad-At-All Day

Browsing Facebook this morning I read a friend's post describing a series of delightful interactions that had lit up their day. Nothing earth-shattering, just random, ordinary things on a regular day. It made me smile and I instantly thought, "Well, this is the opposite of an Alexander day!"

Judith Viorst's book Alexander and the Terrible, Horrible, No Good, Very Bad Day came out when I was in high school, so it's not one of my own childhood favorites. Still, I must have read it to my younger sibs enough to be able to visualize the illustrations and to sympathize with Alexander all these decades later. I do not care for lima beans one bit and get anxious if I'm stuck in a middle seat in a car ride. (#motionSickness) 

Like Alexander, it's not always the big things that throw me into a funk, it's the little stuff, the ordinary, the everyday. Like the printer that printed in the morning but won't print later that afternoon and the app that decided I needed to log in again right before checking in for PT and no, won't fill from my password app, and yes, needs a verification code sent to your email. No, not that email. Not that one either. My bath was too cold, my favorite pair of PJs was in the wash. Some days are just no good days. Even when you're not 7. Even in Bryn Mawr.

So...today I enjoyed exchanging cheery greetings with the young man at the desk at the YMCA, caught five minutes with Math Guy and their puppy, got a sandwich at my favorite food truck and brought one home for Math Man, too. I had an email about a writing project that made me laugh out loud. Some days are not-bad-at-all days. 

_________

If you need cheering, I can recommend the reading of Alexander above. I adored the purring cat joining the chorus at the end. I appreciate that Alexander's mother doesn't try to cheer him up in the end, just acknowledges there are sometimes not good days. Even in Australia.

Planning Parameters

Math Man has grown into a terrific cook since the pandemic, and it’s been a delight to come home at night and not always have to move directly into getting dinner on the table. Every. Single. Night. It’s been more than a relief to let some of that go, I feel cherished. Still, I have been taking the lead in creating menus and shopping lists, and the rest of what goes into running the kitchen for most of the last decade.

Math Man was a great parenting partner when the kids were small. We could swap at the drop of a hat, he could pack a diaper bag, knew what size shoes the kids wore, and could handle whatever the day threw at us as well as I could. 

Parkinson’s progression is to some extent unpredictable (though this review has some helpful data), and while at the moment I’m not terribly limited in what I can do, the advice is to be pro-active in preparing for a time when I perhaps can do much less. So the broken door lock got replaced with one easier for me to use, and Math Man needs to be able to step in just as he did so long ago. This weekend he started shadowing me on the meal planning. Starting with the week’s menu. Which we keep on a call board thanks to Crash’s pandemic organization.

Math Man: How about French dip sandwiches for dinner Sunday?

Me: How about salmon instead?

Math Man: What are you thinking?

Me: Well, we should have at least one dinner that is built around fish for the protein, and at least one vegetarian dinner. Which nights do we need a quick dinner between work and an evening activity for which a sandwich option would be a better choice?  What are you thinking?

Math Man: How do I figure out a menu that will include tater tots?

Me:

______

Also me: Are there any nights one or both of us are out for dinner? what's in the freezer that we can use? What vegetables am I likely to be able to get at the farmer's market? Oh and I’ll be checking the board each morning to see what needs to be defrosted, if anything. 

Lost in translation

 

I am working on a piece on reading chemistry articles in other languages. I am reading "Chemistry Through the Language Barrier," written in the late 1960s when Google translate was science fiction. The advice is practical - how can you wring what you need from a paper written in Czech or Polish or...Russian or Chinese? Well, when it comes to that last, the author's advice is best summed up as "Good luck and godspeed!", but Japanese is not out of reach he assures you.

Exercises are left for the reader, in part so you will believe his methods possible.

Yesterday I was happily ensconced on the divan in my office, a cup of tea on the side table and went to grab my yellow pad to jot notes and thoughts. Argh, it was across the room on my desk. Too lazy to get up, I grabbed the nearest blank writing surface: the next blind date book on my stack.  I happily scrawled away. Now I am trying to transcribe what I wrote into my electronic notes and finding myself at a loss translating sentences where the ink failed to write on the tape.

_____

Earlier I had been reading the foreward and mentally debating the author. Imagine my shock when I reached the end to discover my father-in-law had written that foreward.

Profound peace

Justice shall flower in his days,
and profound peace, till the moon be no more. — Ps 72:7

“Profound peace” — this is what we prayed for in the psalm for Epiphany.  Not just peace, a simple cessation of hostilities, but a peace so deep, we could not claw our way back to war. Not just peace, tenuously enforced with threats, but a just peace. 

We prayed for that peace, for justice, as the US went in with guns blazing to decapitate the government of Venezuela. It was hard to avoid the irony.

The government would have us believe that this invasion, police action, whatever, is to protect us from fentanyl (which their own data says is not produced or trafficked from Venezuela). Venezuela does traffic some cocaine, but even if every cocaine related overdose in the US could be attributed to this route (and it’s not among the top three sources) the number of cocaine overdose deaths is about the same as the number of people in the US who die from hunger each year. (More than 20,000 people in the US died from malnutrition in 2022.) The current administration didn’t think that suspending SNAP benefits to the hungry last fall was an emergency, so why is this? 

Could it be that feeding the hungry doesn’t make for stirring military videos? 

_________

For two weeks of the entire US military budget, we could fund a full year of SNAP benefits. 

There hasn’t been much support for addressing drug addiction either.

Pondering : A homily for Mary, Mother of God

This homily was written for one of the Homilists for the Homeless volumes. I have been rummaging around in my old writing as I prep for a couple of upcoming retreats. I am reminded of the need for prayerful reflection, not just at the New Year but every day. There are many frames for the daily Examen, but this list is a good starting point for me. What might you add?

• What astonished me? 
• What brought me to tears? 
• What made me howl with laughter? 
• What suffused me with joy? 
• What brought me closer to God?

---

As for Mary, she treasured all these things and pondered them in her heart. — Luke 2:19

These days in particular —  poised between seasons, teetering on the edge of a new year — lend themselves to pondering, to treasuring the past year in our hearts.  What astonished us? What brought us to tears? What made us howl with laughter? What suffused us with joy? What brought us closer to God?

We contemplate, too, what the new year will bring. Will it astonish us? What new griefs will we have to bear? Where will we find God? When will we desperately need God?

Luke tells us that Mary pondered the all the events that surrounded Christ’s birth in her heart. I imagine her cradling a young Jesus in her arms, still astonished at her visit from Gabriel, still overwhelmed with joy, still worried what Simeon meant when he promised her heart would be pierced. What, I’m sure she wondered, would the next days and months bring? How would she cope?

How can we follow Mary’s example and prayerfully ponder our past, present and future with God? In his Spiritual Exercises, St. Ignatius of Loyola suggested a short daily practice called the Examen, a way to recognize God at work in every aspect of one’s life. Take ten minutes at the end of the day, advised Ignatius, and seek out God’s handiwork in your life.

Ignatius’ prayer begins by recognizing that we are always in the presence of God. Don’t be timid, ask God to help you pray, to bring his light to bear on your day. The line that opens today’s psalm well captures what Ignatius hopes for those praying the Examen: O God, be gracious and bless us and let your face shed its light upon us. [Ps 67:2]

Next, says Ignatius, tell God you are grateful. Ingratitude — not pride or greed — was the ultimate root of all sin, thought Ignatius. If we cannot see that all we have, our very lives and all that surrounds us, comes from God, then we are blind to God. God is our true treasure. Be specific, search your day for one or two luminous moments for which you are particularly grateful, and give God thanks for these gifts. 

The meat of the Examen is a review of the day. Take it hour by hour, noticing with God where you felt his presence, where you felt particularly beloved. Where did you love in return? The point is not to scour for sins, small or large, but to become more and familiar with how God is at work in your life. This is what God desires for us, as he asked Aaron to bless the Israelites, and by extension, us. May the Lord uncover his face to you reads the last line of Aaron’s blessing in one translation. May you see the Lord.

It is often the small things that turn out to be most important, the moment when someone unexpectedly waved you ahead in a long line at the grocery store, or the sense of awe you experienced walking out the door into a beautiful afternoon. As C. S. Lewis in noted in his Letters to Malcolm: Chiefly on Prayer, “We must not be too high-minded. I fancy we may be sometimes deterred from small prayers by a sense of our own dignity rather than of God's."  Don’t be too high-minded, share it all with God.

We are humans, and inevitably we fail in our love for each other and for God. So notice, too, the moments that make you wince as you review the day. Ask God to forgive you and prayerfully seek his advice on what remedy you might make. Who should you apologize to? Is it once again time to seek out the sacrament of reconciliation? What might you do differently next time? Ask God for the grace to walk anew in his pathways.

Pay attention to your feelings during the review of your day, what part of this prayer stirred your heart the most? Talk it over with God. Ignatius recommended doing this as one friend might speak with another, heart to heart. Finally, look to tomorrow. What are you worried about? What are you looking forward to? Close your prayer by asking for God’s grace and strength 0for what is to come.

As we begin this new year, resolve to take up the habit of sharing your day with God, treasuring its joys as Mary did, and pondering anew how you might in this moment grow closer to God. Like the shepherds and all who heard their stories, allow yourself to be astonished at what God has done for you, the small miracles as much as the large. 

May the Lord bless you and keep you, may his face shine upon you, and may you have peace, today and all the year to come.

____________

Image is Mary, Seat of Wisdom, at St. John's Abbey.