Magic decoder

I have been blogging in this space for more than 22 years. Almost a third of my life? When I began in 2004, blogs — online diaries — were having a moment. People wrote about science and parenting and hobbies and teen-aged angst. MySpace was a year old, and reaching a global audience. I ended up on what was then Blogspot and is now Blogger for reasons that now escape me. There were monetized mommy blogs and science blogs and hobby blogs and blogs that started and after two posts stopped. There was WordPress for the blogger who wanted to micromanage every aspect. There were readers that tracked the blogs you read, letting you see updates at a glance. And then there weren’t. MySpace had a meltdown and lost more than a decade of users’ content. (Always back-up!) And a couple of years ago, MySpace became read only. The rise and fall of blogging. 

Now there are Substack and Medium. Blogs by another name.

And here I am, still blogging. Still on bare-bones Blogger. I have written 2140 posts, 300 of them remain in draft. A total of 653,464 words. How do I know that last? I learned Python and wrote a few hundred lines of code to take a feed.atom file (what Blogger gives you for a back up) and turn into a tidy Scrivener project, each post in its own document along with any images, tagged with its publication date and carrying its metadata along. I can pull up all the posts from 2015 and turn them into a cleanly formatted file (PDF or Word or RTF or…). I can collect all of Barnacle Boy’s adventures. [His comment: “My whole childhood is on there.” Not quite, see below!] Or everything I tagged “Ignatian.” I can mine my own data. How many em dashes have I used over the years? It’s like having a magic decoder ring.

Why have I kept up the blog all these years? The tag line at the top of my blog says (in Latin , because everything always sounds more profound in Latin, right?): Tenet insanabile multo scribendi cacoethes.“An inveterate and incurable itch for writing besets many.” It besets me and certainly the blog scratches my itch to write, the need to wrap words around what I notice.

Writing is thinking through your fingers, said Isaac Asimov. I write to think through things, to clarify and sharpen my ideas, my arguments. It’s what was so devastating to me before I was diagnosed with Parkinson’s, when my typing mysteriously became glacial and writing by hand impossible. Denied my usual tools to write, I felt stripped of my ability to think. Ideas swirled around, but it became harder and harder to capture and refine them. (Note the absence of posts in early 2024. Note also my gratitude for the diagnosis and the medication that has given me back so much.)

The blog is a seed bed for my writing over all. On occasion it has led to opportunities to write for print, more often I can pull a phrase or return to an experience years past in a new piece of writing, the details kept fresh in a post. I certainly could have kept a private journal or written some version of morning pages, but the discipline of writing cleanly and clearly for a public audience, no matter how tiny, made those bit and pieces richer.

Because the blog is public, and not anonymous, I have tried never to write anything I would be ashamed of seeing on the front page of the New York Times. Or to write about students or colleagues or family in a way that embarrassed or denigrated them. (So, no, my kids’ whole childhoods are not here, and there is not a juicy academic roman á clef to be dug out of the posts.)

I have met some amazing people through the blog, some have become incredible friends and colleagues outside the confines of the interwebs, some who I only know as a screen name on a comment. What is a writer if there are no readers? 

I have enjoyed having this space to think aloud, to wrestle with ideas that had no other place to go. I hope to continue to enjoy it for years to come (and yes, I back up regularly!). Thank you for reading!

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The interface keeps suggesting I “correct” blog to blob. 

Sacred laundry

“There are many helpful Episcopal Church web sites about getting lipstick off purificators and candle wax off altar cloths but nothing about removing blood stains from albs.” From a 4:20 am text to Crash Kid and his partner.

My soon-to-be daughter in law shot back, “This is written like the opening line to a mystery novel I would want to read!!”

Maybe this is the next book? The current mystery is more practical. How do I get the blood stains and the red wine stains out of my white alb, currently soaking in cold water? Just like in a mystery novel, let’s use a little flashback here…

I was the altar server at the 5pm vigil Mass last night. We had a visiting priest who preached a banger of a homily, and I was trying to be attentive to both those weird “unique to this parish” things for the visitor and to the ways he prefers to preside. So, you know, I was trying to be mindful and attentive to the liturgy. Pride, as we know, goes before a fall. And it surely did.

The gifts were presented, I took the wine with me to the credence table at the back of the altar to collect the cruet with the water. As I turned and took a step I caught my foot in the hem of my alb. Suddenly I realized I was going to fall and there was nothing to stop me but the marble floor. My training in how to fall (thank you UCI Dance and El Gabriel) kicked in and I tucked and rolled. The water cruet flew from my hand and shattered with a tremendous crash. In seconds the altar was swarmed by people. I am mortified, also wet. As they began to help me up I looked at the hem of my alb and saw a bright red stain. Uh-oh.

"Someone is bleeding," I thought. Then a few seconds later,"It's probably me." It was. Off I went with two parishioners who are nurses to the small chapel behind the main altar where we staunched the bleeding. Presumably clean-up went forward, but I was out of play. The presider came back to make sure I was ok, and told me it was going to be a memorable visit. Someone popped back to ask me if the wine had been consecrated. No. Definitely not. Someone else said that the wine was sitting, apparently unspilled and unbroken on the floor. (As it turned out, a great deal had spilled, all over my alb, but I didn't drop it and apparently set it neatly on the floor. Huh.) They got fresh wine anyway. Good. 

We hunted up a first aid kit to bandage things up so I didn't drip on my alb anymore. The pastor came. It's communion, the helpers went out to receive, the ministers came back so I could receive. (Is this technically allowed? Is it covered under communion for the sick? Did I satisfy the Sunday obligation? This is Roman Catholicism, thereby there must be a rule. No one invoked it. There are definitely rules in place that cover what happens if the priest can't go on — see De defectibus.)

I went home, carrying the alb. Math Man took me to the ER. It took four hours and three rounds of X-rays to locate and removed the glass embedded in my hand. There were jokes. Math Man sent Math Guy photos of the damage (to reassure him I was told). "Stigmata!" he chortled. The transport tech wanted to know if I'd been in a bar fight. (It didn't occur to me that I must have reeked of alcohol, all that red wine on shoes and pants, which were at least black. Parkinson's has dulled my sense of smell.) 

There were apologies from the staff that it was taking so long, and thanks for my patience. I didn't tell them that I had once been in that ER and not had to wait. It didn't end well. Waiting is good.  Except that waiting gives the ghosts time to gather. 

This morning I picked up the alb from where I'd left it yesterday and noticed the violet stains everywhere. What? Oh. The wine. Which leads to the question at hand: how do you get both red wine and blood out of a white alb?

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Odd thoughts: 

Is the clean up protocol different if the wine had been consecrated? Short answer. Yes.

There is advice about cleaning blood stains in First Initiation into Carthusian Life (a manual for Carthusian novices, mostly on prayer, but with practical advice on mail and meals and laundry tacked on to the end).  Soak in COLD water and the stains will vanish in short order, it advises (But only in a Carthusian charterhouse, the rest of us might need to summon the imps of Oxiclean.)

Spelling: the sign “waive here” outside ED radiology (to open the door) a place I visited repeatedly; the clinical notes say I fell on the "alter".

"In Residence" - the Shonda Rhimes mystery we've been watching. Lots of flashback. A scene where the White House chef Marvella smashes glasses on the floor, screaming "Broken glass!"

What's my name?

 

I needed the receipt for a recent flight. Easy-peasy, right? It was mailed to my work account. Except it didn’t show up. OK, I’ll get a copy when I check in. Ooops. I forgot to ask outbound. My bad. No problem, I’ll get it on the return. Yeah, no. There was no staff available for that in the steamy Frankfurt airport. You can get it online, madame. 

Props to the clear web site, clicked on “get receipt.” A webform appears which wants my ticket number, which I have, and my name. Which I know. I paste in the ticket number, type my name and hit the button. Nope. Nope. “You must use the same name you booked under.” Did I mistype my name? I must have. (Thank you, Parkinson’s, typos happen more often these days.)  I tried again, no typos. Hit the button. No? No. “ You must use the same name you booked under.” 

Ok, was my name truncated by the computer system? I check my boarding pass. Yeah, no. My name is what I think it is. First and last. Do I want to chat with an agent? I do. The AI agent takes my information, suggests I try the webform that isn’t working, then offers to pass me to a human. “You are number 486 in the queue!” 

I am working, so leave the window parked in the corner and periodically check. By lunch (two hours in) I’m 276 in line. Am I still there, the AI wonders. You bet. I wait four and a half hours to get a human (who the AI confesses is helping multiple customers at the same time, so don’t worry if they are slow.) 

The human suggests the webform. I point out that hasn’t worked. Can they give me a copy? That is against policy. Well, I asked, what can I do? Silence. I can email it to you. Awesome. “Can you doublecheck the email?” Sure, sure. I type in my work email. That’s it, I’m assured. It will take 15 to 20 minutes. “Thanks again,” I chirpily type. The chat ends.

Thirty minutes pass. No email. Five hours in and I am still without a receipt. I check to see if I can retrieve it through my credit card. And that’s when the shoe drops. That receipt says the ticket was issued for FRANCL, MICHELLE PROF/DR. Oh. It thinks my first name is MICHELLE PROF/DR? It sure does. The web form cheerfully regurgitates my receipt. 

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I note the booking form asks for your first name separately from the title. 

Interestingly enough, the typing of people with Parkinson’s has a distinctive pattern, which can be used to screen for possible Parkinson’s. A bit about the development of the screen is here. I did the screen shortly after my diagnosis and correctly directed me to consult a neurologist as it was positive for potential Parkinson’s.

UPDATE: So, a funny thing happened. It’s been about a week since I had this conversation. At 6:33 am today, the receipt showed up in my email. 

The Last Lecture

On the first of May, I gave what I imagine was my very last lecture in a chemistry course. This was not the last lecture of the movies, where a grizzled professor in a tweed jacket waxes philosophical about life within the ivory tower, students hanging on his every word. This was not the poignant last lecture of a computer scientist in khakis and a polo. It was just my usual last lecture of introductory chemistry: on nuclear chemistry, on rads and rems and banana equivalent dose and how nuclear reactors work. And about the pile in the squash court at University of Chicago. (“Was it ever used to play squash on again?” wondered a student.) And when I was done, I wished them a good summer.

It was how I wanted to end my teaching days, with a solid lecture, not a flashy performance, covering material that mattered. To finish as I had gone along all these years, with the needs of my students directing what and how I structured a course, a lecture, an assignment. With an eye out to what might matter for the world. 

It felt like a good landing, and one that I could not have managed without a generous portion of chemistry, given how my own neurochemical machinery was misbehaving. What was utterly impossible the previous time I had  taught this course — writing on the blackboard, scrawling comments on student papers — was once again possible. What was then merely difficult — constructing notes on the iPad, walking down the hall, gesturing at the board, projecting my voice — I can now do without thinking. I am grateful for the chance to retire on my own terms and not because Parkinson’s is pushing me out. I am grateful for the all the pieces and people that made this possible, from the meds to the 50 grams of metal on my Bic pen. PTs and OTs, neurologists and psychologists, spiritual directors and pastors, colleagues and friends and family. I absolutely could not have done this without all the help. 

There have been celebrations and notes and recorded greetings. Crash crashed my retirement party, appearing unannounced at the door last weekend from the other side of the Atlantic. His brother, Math Guy, said they had something to drop off. He wasn’t kidding. And I still have work to do, a couple of letters of recommendation left to write, grades to assign (finals are graded!). Saturday I will march in commencement and get the last word before I, and this last class of students, walk out of the tent and into whatever is next. 

To Be Seen

To Be Seen

The neurologist pulled her chair around to face me. Then she gently told me that the difficulties I had been having writing equations on the blackboard and tying my shoes were not arthritis but the result of an incurable, progressive neurological disease. Oh.

I left her office feeling curiously relieved—grateful for the small mercies she offered to ease the symptoms, but thankful above all because she had so clearly seen my affliction. So often our sufferings go unseen by those around us. We fear, perhaps, that God does not see our struggles either.

But from the opening antiphon to the Gospel, all of today’s readings promise us otherwise. We are seen, we are known, and, even in the face of mortal danger, we are held close by God, who Isaiah tells us delights—exults!—in his people.

Unlike the heart-stricken father in John’s Gospel, I do not come to God these days seeking a miracle, or even signs and wonders. I come to see. And I come yearning to be seen.

St. Augustine said of the Eucharist: See who you are, become what you see. So I stand before the altar and see Christ lifted on the cross, suffering and fearing he was abandoned. I see who I am, suffering and afraid of what the future might hold—and know I am not alone. I hold out my hands and realize that I am seen in return, called forth from the depths of the netherworld, bound not only to the cross, but promised life. I am seen in my affliction. That is miracle enough, so I believe.

Michelle Francl-Donnay is a wife and mother, a professor of chemistry, and an adjunct scholar at the Vatican Observatory. She is author of Prayer: Biblical Wisdom for Seeking God in the Little Rock Scripture Study Alive in the Word series. michellefrancldonnay.com. 

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This reflection appeared in the March 2026 issue of Give Us This Day and is used with permission.

The reflection had its roots in the Entrance Antiphon: "As for me, I trust in the Lord. Let me be glad and rejoice in your mercy, for you have seen my affliction." The psalm for the day is the one that I could not stop running through my head the terrible night that Tom died. The dance of tears and joy, of fear and trust. And I kept thinking in the Gospel about the long walk home that the father in the Gospel had, not knowing whether his son lived, had his miracle been granted? Would he still have believed if his son had died?

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.

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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.”

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.

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:

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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. 

The measure of my anxiety

 

The opening to at least one season of Downton Abbey shows the servants setting the table, using a ruler to precisely align each table setting. I am having a spot of surgery this afternoon (nothing serious, nothing major, I hasten to add) so have been trying to sidestep my anxiety by doing some prep for Thanksgiving dinner. Which we are hosting on Thursday.

I pulled out the china from the cabinet and brought up the extra silverware from the basement. I set out the serving dishes. I ironed the table runner feeling both old-fashioned, (ironing the linens?!?) and soothed. I find ironing very soothing, it's one of the things Parkinson's made so difficult and my ability to do it again a source of almost as much gratitude as folding my socks.

Was the table runner centered? I adjusted it and contemplated it from various angles. Maybe? Ah — the Downton Abbey scene flashing into memory — I have a ruler in the kitchen. Yes, in fact it was centered. Now if only I can stay centered!

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The Princess Diaries

TIL about "the princess treatment" which has emerged from TikTok. I am not going to link to these viral princess diaries. Do feel free to read the article in the NYTimes or Huffpost, which has all the links you might want (or not want.)

I am going to admit to being horror struck. The influencer wants her husband to treat her like a princess. Fine. Why? To let him lead, to help her discover her softer side. OK, I guess, if that's a mutual thing. It's the how that had me gasping.

She doesn't speak in restaurants. She remains mute while he lets the front desk know they've arrived. He orders for her. If he must drop her off, he will get out of the car to open her door, walk her into the resaturant and then...deal with the valet or park the car. Other people waiting to park? Hang on, the princess is getting her due. Should the host or hostess try (dare?) to engage her (having missed all her body language that says don't speak to me) while her husband goes to park, she tells them she really couldn’t say and they must await her husband. Oh..and she rarely ties her shoes. Obviously he should notice and do it for her. It’s that last that really got to me.

I would like to introduce the princess to my Parkinson's diaries. Before I was diagnosed I was having trouble tying my shoes, opening car doors, fastening my seatbelt. Medication has masked these symptoms, but they are still there, and there are times when I need help, not because I want the princess treatment, but because I have Parkinson’s, not because I want to showcase my softer side, but because I am dealing with something hard.

Parkinson’s affected my voice, will it eventually become so soft that Math Man must order for me in a restaurant, or that I have to wait for him to speak to the host/ess? Will things progress so that I will need my husband to walk me to the door and open it for me? No one knows.

I am grateful beyond measure that I can currently tie my shoes and speak for myself, that I don’t need to be treated like a princess because of my Parkinson's. I wonder if the influencer would find these attentions so attractive if they were necessities? Or if her husband needed her to tie his shoes?

I know myself well loved without having to cosplay a princess. Math Man sometimes appears with roses, for no reason other than .. roses! Or brings me a popsicle from the basement freezer. Or disposes of the deceased mice (don't ask). And should I lose my voice, I trust him to speak for me.

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Photo is of the Fife Tiara, designed by Parisian jeweler Oscar Massin, and given to an actual princess (Queen Victoria’s granddaughter Princess Louise). On permanent display at Kensington Palace, London. Used under a CC license. See here.

Math Man notes that when we waltz, I never do let him lead. 

Shout

 

Shout
Shout
Let it all out
These are the things I can do without
Come on
I'm talking to you
Come on

In violent times
You shouldn't have to sell your soul...

Forty years ago Tears for Fears released "Shout". I hadn't thought of the track in years but today as scientists and others gather to rally for science in the face of the cuts proposed by the current administration's unelected minions I find it running through my mind. Can we shout, make ourselves heard above the maelstrom that we are living through?

I am committed in the current moment to being noisy where I can. Like a great wind blowing, the current events are snatching our voices, drowning out the cries of the poor, the marginalized, the hungry, the sick, and the suffering with their drum beat of lies. The beating drums are meant to frighten, to shock into silence, to bewilder.

I wrote the op-ed that follows, which appeared in the Philadelphia Inquirer last month. I woke up at 3:45 in the morning with the question running through my head, "Is this what you voted for?" 

Know a Trump voter? Ask them, be specific. Did you vote for an increase in pediatric cancer deaths? Are you willing to forgo treatment with anything developed using funding by the NIH? Really? Have you have had shingles? No? You got the shot? Great, NIH funded. 

Shout.

The op-ed:

“This is what the people voted for.”or so we hear from the White House with each slashed program. But is it? Did people really vote to tear apart the National Institutes of Health (NIH) and lay waste to the nation’s scientific infrastructure? Perhaps you did, wondering what we get for our $48 billion every year.

I know what I have gotten: my life back. The pioneering work that led to the drug that I take for a neurodegenerative disease was done at the NIH, by a foreign scientist here on a visa. Without that drug I struggle to write on the blackboard, walk down the hallway, or even brush my teeth. It's not a cure, but with it I can work full time — and pay the taxes that help support the NIH.

I also know what others have gotten. When a teen-aged friend died of acute lymphoblastic leukemia (ALL) in the 1970s, survival rates were about 25%. Now 90% of children with ALL survive thanks in part to research supported by the NIH. 

A study by Ekaterina Cleary, Matthew Jackson, and Edward Zhou published in JAMA in 2023 showed that nearly every drug approved by the FDA between 2010 and 2019 was touched by NIH funding. Shingrix to prevent the misery of shingles. Dulaglutide to control blood sugar in type 2 diabetics. Stelara for Crohn’s disease. Lifesaving drugs for cancer, including Keytruda and aflibercept. My own research into the mechanism by which the anti-cancer drug taxol works was funded in part by the NIH.

Private investment in pharmaceutical research cannot replace the NIH. The work done by academic scientists is not proprietary and can be shared widely, amplifying the effect of our government investment. Commercial companies have a responsibility to shareholders, they cannot take as much of a risk as NIH funded projects can. Not every research project on lizard saliva will lead to a block buster drug (as it did for Ozempic) but some will. We need both public investment and the private sector to continue to be world leaders in health care.

But you voted to get rid of”wokeness” not real science, you say? The US has a high maternal and infant mortality rate, appallingly so for black women. Cancelling the research related to race keeps us from understanding why these disparities exist and what to do about them. Women and babies will continue to die. 

If ending public investment in biomedical research in the US is what you hoped for when you voted in the 2025 presidential election, then I expect you to look me in the eye and tell me you voted for me to be disabled and unemployed. I hope you can explain to your neighbor why her grandchild was stillborn and her daughter dead. Or tell your father that no cure for your mother’s Alzheimer’s disease is coming anytime soon. Because that’s what you voted for.

If this isn’t what you voted for, then I urge you to call your congressperson and your senator and tell them so. Before it's your life on the line.

___________

Photo is of molecular model of L-3,4-dihydroxyphenylalanine, L-DOPA, the standard of care for Parkinson's.

Other weighty matters

I’ve been writing weighty stuff of late. A piece for Nature Chemistry about the literal stardust that sprinkles the earth every year (10 million kilograms of it). An op-ed on metaphorically weighty matters, what gutting NIH funding might mean for people’s health, from my perspective of a patient who has benefited from fundamental research begun at the NIH. 

It’s 1.5 ounces of mass that’s been almost as much a miracle as the medication I take. A hexagonal weight that slides onto a $0.79 Bic pen. And with it, like magic, I can write a grocery list, scribble a thought down on a sticky note, jot notes on a journal article I am reading. Write a short letter to a friend. I suspect I can write comments on students’ papers again, though on a sabbatical leave this year I haven’t tried. 

Like the new found joy of folding my socks, I imagine that I will be excited about grading again. Who knew?

I feel a bit like Disney’s version of Cinderella. A fairy godmother has waved her wand and turned a pumpkin of a pen into something that can take me to the ball. I love my Japanese gel pens and my fountain pens, but I love more being able to make my mark on a sheet of paper.  And it may be that metaphorical midnight might come — and poof! — this hack will cease to work. But for now, the physical therapy fairy’s magic still holds sway.

Reality check

I have an op-ed coming out in tomorrow's Philadelphia Inquirer that covers some of this ground. It's up online here.

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Last night I did something I hadn't done in almost two years. I made lasagna for dinner. I used the recipe I reverse engineered from my favorite restaurant in Albano Laziale.  That's nice, I hear you thinking, glad it is back in your rotation. What I want to say back is, "nice? nice? It's a miracle." 

The lasagna is that good? Well, it is, but it's the preparation that's the miracle, or rather that I can undertake it. 

I use a homemade tomato sauce, which requires dicing onions and mincing garlic and opening cans of San Marzano tomatoes. I brown Italian sausage. Grate Parmesan. Hand knead dough for fresh pasta. And make béchamel sauce, which means briskly stirring to emulsify the sauce. From start to sitting down at the table it takes about four and half hours.

But recently I couldn't: dice things, open those cans, break up the sausage in the pan, knead the dough or stir the sauce to emulsify it. Some tasks on that list were merely very difficult (dicing was glacially slow) and some were just impossible. Stirring that sauce.

It was a bit like the frog dropped in a pot of cold water, slowly being heated. Things almost imperceptibly got difficult. My handwriting got smaller. Writing on the blackboard for an hour got harder. Then it was a problem to get through an entire problem. It became tough to cut a sandwich in half. Folding my socks was a challenge. So was tying my shoes. And stirring. I couldn't make a quick pan sauce. (I know, I know, first world problems.) Then it was folding flour in to make a cake (more first world problems.) Then it was stirring my tea. That was a problem. I was in hot water.

Like that frog, for the longest while I kept adapting, or at least not noticing. Adapting my wardrobe, choosing blouses that did not need buttoning (or ironing, yep, I still iron stuff). Adapting my approach to research, dictating more, typing less. Not noticing that I wasn't making lasagna on a winter Sunday afternoon. Or choosing to have yogurt for lunch instead of a sandwich. 

This is not a bid for sympathy. It's a grounding in reality, in what can be at stake in scientific research that on the surface seems quirky (lizard saliva or getting a tranquilized rabbit's ears to perk up) or esoteric (using singular value decomposition to help assign atomic charges to atoms in a molecule.²) Or that is supported by the government, or was done by someone in the US from another country. 

Some of that research can be life changing. (Both the lizard saliva and the pop-up bunny ears research was.¹) And some of it will not be. We try as researchers to follow trails that will be productive, but not every line will lead to immediate results, some will not lead to results at all. We are exploring the universe, not following well-trod paths to known destinations.  There will be dead-ends. This is not fraud or waste. It's how research works.

The drug I take, that allows me to dice onions and emulsify a sauce, that makes it possible to care for myself and continue to work was developed in part by a scientist here on a visa at the NIH. The reality is that without it, I would be disabled and unemployed. Thanks to NIH funding (and medical insurance), I have access to a life-altering therapy. It's not a cure, but it is a miracle. Other people deserve their miracles, too. 

But Trump and Musk cry, "Fraud! Waste!" and say the NIH is a disaster. Their cuts to indirect costs will save each household less than the cost of 2 months of Netflix (about $30), and cost some people their lives. 

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1. A study on lizard saliva led to Ozempic, the bunny ears to a Nobel prize. Rabbits that had had Parkinsonism induced chemically had their droopy ears almost instantly perk-up when L-DOPA was administered. L-DOPA is still the gold standard for relieving many of the motor symptoms of Parkinson's. And as miraculous as it is, it is not perfect, so I am still rather personally invested in ongoing research.

2. That bit about singular value decomposition and charges might seem esoteric, but is my work and is used today in in silico drug design, including therapies for Parkinson's. 

Photo is of an earlier lasagna, circa 2022.

Time past and time future

"Time past and time future
What might have been and what has been
Point to one end, which is always present." TS Eliot, Four Quartets

The year of our Lord 2024 faded to 2025 as I climbed out of a hot soaking tub last night. The light was dim, the towel warm and soft. The aches of one year soaked out, the grit of another year washed away. A baptism of sorts. I spent the first minutes of 2025 in prayer, the ablutions an apt way to enter into that time and space.  

This last year has been eventful. Delightfully so at times, and at others presenting new and enormous challenges. In January, Steeped came out and caused a minor brew-ha-ha. (Or perhaps not so minor, the PR people estimate the news was seen more than 19 billion times.) There were many puns. There was a limerick (on Wait, Wait Don't Tell Me). There was a US State department briefing. There have been molecular tea parties. I did a tea and cake meet-up hosted by the Royal Society of Chemistry with Josh Smalley  — a chemist and GBBO finalist. I signed many books. And most delightful of all, I heard from so many former students.

In early April I gave a weekend retreat at a retreat house on the Finger Lakes in upstate New York just before the total solar eclipse. The retreat was a chance to read God's other book with a wonderful group of people  — friends old and new. Despite the clouds that obscured the sun, the eclipse was a moment of awe. 

I wrote about hope in the context of the election and in my own life, and about what made chemists think about putting fluorine in so many drugs. 

In July, on the feast of St. Ignatius of Loyola, I learned that I had Parkinson's disease. For the moment my symptoms are well-controlled and physical and occupational therapy have given me back so much that I had thought lost. May I never again take for granted the ability to sign my name or stir a cup of tea or cut a sandwich in half. Or fold my laundry. I haven't been able to bring myself to watch some of the video footage from the RSC event last summer, it is painful to see how much difficulty I was having. As for the future? It is unknown.

To what end does all this point? When I was studying for my master's in theology, one of my professors said if you were ever stuck in your comps, remember that the answer was always the Paschal Mystery. (This, I would like to point out, was no help at all when I failed to remember the dates of the minor prophets.) Passion, death and resurrection, a triplet of mysteries, all arising from the incarnation. Or if you'd rather, the mysteries of beginnings and endings, joys and pains. Woven together by threads of hope and wisps of grace. Everything points here.

Scouring the horizon

I read a lovely reflection on hope and expectation at Just(e) Words. Hope, she reflected, is a thing. It tangible, it's at work in the world. It's real.

But I hear the statement with an undertone of teen-ager. It's a thing. It's so tempting to say hope isn't a thing anymore, that hope is just not a thing. Or perhaps, not the thing, in the current world. Hope is for those who have lost something, not for those who have everything. 

Hope is expectant. Hope is for those who are seeking something. For those who are sure there is more than the world promises. Expect, I learned in Just(e)'s reflection, comes from the Latin root spectare  — to look. To expect is to look outward, to see beyond oneself. To expect is to look hard at and toward the future.

My study window at home faces the west and while I can't quite see the horizon for the trees and houses, I catch glimpses of what is coming. Today I am scouring the horizon for any signs of incoming weather. We might have snow. We expect some rain. We are in desperate need of something to ease the drought. (Remind me of this when the basement floods!)

I am scouring my personal horizons as well. I misread so many signs of the Parkinson's. My smaller handwriting, my difficulty writing on the board and stirring my tea and typing. Almost imperceptibly my horizons shrank. My world has expanded again, but I worry about what is on the horizon.  

Hope has feathers -- and talons

Hope, wrote Emily Dickinson, is the thing with feathers. Which feels a bit like something you might cup in your hands,  careful not to ruffle it or outright squash it. Or perhaps not. I saw this description on social media (but haven't been able to track down the source - so if you know, please share!): “People speak of hope as if it is this delicate, ephemeral thing made of whispers and spider’s [sic] webs. It’s not. Hope has dirt on her face, blood on her knuckles, the grit of the cobblestones in her hair, and just spat out a tooth as she rises for another go.”

Should hope have feathers, I imagine it as a hummingbird dancing just out of reach, heart beating ferociously. Or maybe she is a red-tailed hawk come screaming out of the sky, her talons out and ready to defend her young. 

I have been thinking a lot about hope lately. The presidential campaign has something to do with that, certainly, but also my kids are at what mathematically I would call critical points -- big changes in direction are coming. Crash Kid is shopping for a house -- on the other side of the Atlantic. Math Guy (formerly known as The Egg) is defending his doctoral dissertation this semester. But mostly I have been thinking about hope because a few weeks ago I was diagnosed with Parkinson’s disease. I know, I buried the lede. Sorry, sorry, sorry. I have not gotten any better at telling people other than to simply say it.

It’s a challenging diagnosis, and a disease with an unpredictable course. I am doing well at the moment, and am mostly hopeful and grateful. Grateful for good medical care, and a treatment plan that has helped my day to day functioning in a way I can only describe as a miracle. Grateful for a physical therapist who suggested a weighted pen that let me write out a grocery list again and scrawl an outline for an essay on a yellow pad of paper. (Bonus, my handwriting is no longer microscopic, which drove my teachers batty back in the day. Which I now totally understand as my eyes have aged.) I am utterly grateful for each day. 

And however illogical it might be, I am hopeful. I contemplate Alfred Delp SJ’s question as he awaited his execution, “So is it madness to hope — or conceit, or cowardice, or grace?” It seemed illogical to entertain hope, he wrote, yet he could not stop returning to the question. Nor can I. It gives me and God something to talk about.

Hope is not fragile, nor is it always gentle. Sometimes it is a bit gritty. But it is always a grace. 

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Read a tangentially related reflection on the Holy Spirit and feral pigeons here.