The Little Words Mean the Most

Talking to my therapist, cancelling today's session

 

Last session, you asked about the title of the book in progress.

 

Right now its working title is Sim One: A love and then-what-happens story

 

A good title comes either like a lightning bolt ... or like you're passing an elephant-sized turd ... with tusks.

 

Another possible subtitle for Sim One: Things we no longer do together ... That theme comes up in a few chapters. But it seems kind of sad for a book that, while gruesome from her diagnosis' standpoint, is really a celebration of a loud lovely life fiercely lived. > With style and great hair.

 

[still talking to my therapist] Titles are hard, especially for straightforward how-to books. My publisher and I came up with 75 or so options for my latest (last?) how-to book ... and never found one we liked. We surrendered and grumpily went with our barely-acceptable second best, shown here.

 

Thank you for all you're doing to guide me. Last week was good. Turned out I'm not the drunk I thought I was.

 

You've likely heard this: Extroverts talk to think. Introverts think to talk.

 

On that spectrum, I'm much more comfortable writing than talking. I can think on the page. It's mostly, for me, a matter of cadence ... and trash removal. The cadence? So, you've just said this ... what are you going to say next? Trash removal: Spot the redundancies, spot the larks, spot the flagrant self-indulgences, remember the audience: what do they need, what do they need, what do they need....

 

You've gotten me to talk, in 50-minute spurts. Thank you.

 

Ahern enters a local hall of fame

 

This news from Mary Jo....

 

"You & the rest of 1963 championship track team are going to the Holbrook Hall of Fame. I remember you running cross country but don’t remember your track event(s). Mile? Two mile? 🏆"

 

NEVER did a "champion" athlete NOT deserve plaudits ... than me in 1963.

 

Did the mile. Did the two mile. They were effortless; it was like flying. You wore the lightest clothing you could. Running distance events with no-weight shoes on your feet was psychedelics before psychedelics. You left scorn behind. You met sunset and sunrise on equal terms.

 

Because of this one thing I couldn't avoid in the first place:

 

I'd been forced to climb mountains in New Hampshire over the past summer, as a camper. The camp was staffed in part by college cross-country runners. We'd go on hikes of several days' duration. I'd complain the entire way, hefting a pack of snacks.

 

Still, unbeknownst, it was a miracle for me.

 

I went in one grueling summer from being the last person across the finish line in high-school cross-country ... to being first ... by a country mile.

 

I was clueless.

 

September-October-November that year were gifts. Winning at track was easy after that; triumphant and arrogant. It was just stupid; my legs were stronger, my asthma-damaged lungs were participants. By accident, I learned a tiny bit more than Holbrook's coaches about interval training (from this Harvard guy I happened into at the town's high-school track).

 

There's some kind of parable here. I don't know where to start....

 

Love forever,

 

tom

 

Who told you this shit was easy?

My Las Vegas love....

As you say, "words are hard." And unexamined, place-holder, endlessly-repeated, jargon-ista words have the dangerous life-span of radioactive waste. "Well, they said it that way ... so we should say it that way, too!" Blah, blah, blah, etc.

The industry's been through this ... more than once. It's a BIG reason (IMHO) why average donor-comm performance (and US household giving) is in decline ... because new practice unwittingly copies bad practice.

My latest real-life example? A good, beloved, award-winning, life-saving nonprofit community hospital system that got ZERO response to a massive email appeal. Hey?!? Me, too! Been there, done that, once upon a time ... before I gulped down 2 decades of training re: "words are hard."

Who told you this shit was easy?

 

Chapter 27

 

Greenie

Bear in mind please, circa 2020-21, the verdict delivered to Simone's bedside:

• there is no CAA treatment;
• there is no CAA cure;
• & calling all you nervous folx carrying the burden of awareness: CAA becomes increasingly common as you age. In laundry, you iron out wrinkles; push back stains with bleach. In the brain, in the skull, beyond the reach of any surgeon living as you read what I'm typing ... things get worse, not better. Simone ages daily. I age daily. You... See what I mean? Aging brains go in just one direction. And even if you're still too young to care about this irreversible trend ... well, your parents and grandparents, love 'em or not, they are aging ... into their CAA-most-likely years.
• so, welcome....

 

Chapter 26

 

How bad is bad?

At 6 AM I couldn't read.

         At 6 PM that same day I could.

Sim One's January 2 brain-bleed sent a mixed message.

         Something was definitely wrong. "It's bad."

         The hospital's chief neurologist didn't sugarcoat what science, experience and modern diagnostics had clarified. Dr. F. came bearing a brace of interns.

        They stood back, respectful, attentive; learning what they could, room after room, scene after scene, little-hope-horror after little-hope-horror. In this room, in this scene, a listening triptych: the afflicted, hopeful patient; me, her steadfast-pretending spouse; our dear friend Ashley, accidental witness to our worst marriage disaster: the beginning of maybe the end.

        I'll guess and forgive: the neurologist both hated and rushed toward this unavoidable moment. Do it. Reveal the worst. Deal with the aftermath. Gloom, yes. But the room was still pre-funereal. No one had died just yet.

         Devices beeped. We stared.

         I took furious notes because why not. Ashley had arrived bearing the city's best pastries; no appetites now.

         Sim One sat up straighter in her slipping green johnny; naturally stylish. Baring herself wasn't a problem. She was the eldest of six sibs: three male, three female. As she had often described the daily scene, as the kids got ready for school in a single shared bathroom: "One was on the toilet, one was in the shower, one was brushing her teeth." Simone had no modesty hang-ups I'd ever detected. On the contrary, she liked to review her poops with me; when reading her entrails, two heads were better than one, she nagged.

        The elephant in the room: How bad was a brain bleed?

         If you couldn't read at 6 AM ... and yet you could read at 6 PM ... really how bad was that diagnosis? Maybe it was merely "I've misplaced my reading glasses" bad. Maybe CAA, in fact, was manageable. Simone's recovery seemed to qualify as a minor miracle! In just 12 hours, her terrifying symptoms had evaporated. Cue smiles, right? Because things might be just okeydokey fine!

        Hold it right there.

         We now know, based on scans, that Sim One suffers from an irreversible condition known as CAA = cerebral amyloid angiopathy. Breaking that diagnosis down:

• Cerebral means it's in her brain. (Humans don't do well with things in their brains.)
• Amyloids are "abnormal" (i.e., NOT good) proteins deposited in all sorts of organs, including the brain.
• Angiopathy means it's a disease of the arteries, veins and capillaries. (Prone to breakage.)

         Another way to look at CAA?

         Simone now carries a time bomb on her shoulders; in her brain. She has eyes ... and behind those sky-blue eyes is CAA. She has lips ... and behind those breaths and kisses skulks CAA. There are experts everywhere. And she's alone. No one knows how long Simone's CAA dynamite fuse will burn: could be tomorrow, could be decades.

No wonder poor dear gets tension headaches all the time. I massage her neck and head pretty much every night.

         It helps a little.

        After the first incident, after the micro-bleed, Simone discovered within 24 hours that she could read again.

         Was reading again good news ... or just deceptively good?

         Know: reading is core to Sim One's quality of life. It's been her #1 passion-delight-relaxant-comfort-life vest since early, early days; as it had always also been desperately for me as well. Simone and I bonded over reading. Was food essential? So they say. Water? So they say. Reading: indisputably.

So now: a second opinion.

 

The tests are in. Simone to her competent neurologist: "Am I about to die?"

 

"Am I about to die?"

         I'm taking notes fast.

         Simone's neurologist fills our future with unavoidable, unpalatable data. We stare. "It was a lobar hemorrhage." Source: Symptoms can include altered consciousness and cognition, severe headache or seizure, stiff neck and vomiting, reduced sensation and motor control, swallowing and language difficulties, and others....

         Doc's voice box flutters. She tells the room; every surface hard, uninviting, easy to sterilize: "You have CAA. Cerebral Amyloid Angiopathy."

         Doctor pauses. My pen pauses.

         Doctor adds, armor-plating the gruesome truth: "There is no treatment. There is no cure. Memory loss is part of the evolution of the disorder."

         An eternity passes in a few seconds.

------

Simone asks, "How long do I have to live?"

         "This is a white-matter disease. It can take years."

         Source: A person with white matter disease will gradually have increasing difficulty with the ability to think. They’ll also have progressively worsening issues with balance. White matter disease is an age-related, progressive disease.

------

There's the ancient rub: the truthful medical answer is "no one knows! Days? Years? Decades, possibly?" A humane answer might be: How long would you like to live, given certain considerations?

         But we don't have that answer either.

         Instead we have diseases without cures without end dates without treatments without help without a clue ... yet. What will save the human race afflicted with amyloid bloom, the cause of Alzheimer's as well as CAA? Honestly: the most promising line of investigation into amyloid reduction in our brains in 2021 depends on lab mice who did better when subjected to light and noise at certain frequencies. Even if it does pan out, a treatment is years off.

------

"Is there anything I can do?" Simone asks. Exercise is always a good idea, doc says. Oh, shit. Sharp curve ahead.

         > Since Simoney and I don't care about exercise ~ at ALL, sun-up to sun-down. We prefer wine (me) and dessert (her). We'll always choose thinking and talking over sweating and huffing (although hiking can manage both; we adore hiking, especially the part where you're done for the day).

"A healthy lifestyle helps."

         > More oh shit. Same general reasons.

"If it's any comfort, the brain scan looks worse than you behave."

         > Huh?

"It could take two months for this to heal."

         > Is that good?

"Expect micro-bleeds."

         > What? SHIT!

 

Is Flesch-Kincaid still relevant, Dawn asks a decade later

Dawn! HELLO!!!

Yes, the tool is still relevant ... more than ever ... I teach it all the time. It's called the Flesch-Kincaid calculator (after its co-founders).

Here's the URL:   https://goodcalculators.com/flesch-kincaid-calculator/

As I probably harped on back then, grade level is NOT about getting 6th-graders to make donations.

Grade level is exclusively about how fast and easily I (an adult who might make a gift) can comprehend what you're trying to tell me: a 6th-grade level is faster than an 8th-grade level is WAY faster than a 10th-grade level ... and if you're trying to shove 12th-grade writing down my throat, you better be buying me a hot-fudge sundae with 3 cherries on top. And a day in rehab.

12th-grade writing ceases to be of any use after the 12th grade (unless you want to be a peer-reviewed scientist or college professor). For the general public, it's an insult to our attention spans.

Flesch-Kincaid standards ripple through the User's Manuals on our sub fleet, where sailors with high-school diplomas tend nuclear reactors and drive the boats. The people at the wheel are 18 and 19 years old (under senior supervision, of course). Thank you, Flesch-Kincaid.
 
Without Flesch-Kincaid, what a mess we'd be in.

 

 

Assumption, presumption; waiting for Larry, Simone's favorite septic-tank emptier

Sim One bounced a check off Larry Torti, the gregarious septic-system emptying guy. The bounce wasn't for lack of money. It was because of in-attention to her balances; easily remedied: there was plenty of money swashbuckling around. But maybe a sign, if you were accumulating signs.

Different story, for fundraisers (and their finger-drumming bosses):

You don’t raise money from 100% of the people you approach ... unless maybe you’re passing a plate in church ... and social scrutiny is Big Brother irresistible.

You raise lama-lama-beyond-measure money from those few, true believers who share your vision, your hope, your anger, your desire, your fear, your beliefs. These are the ones who “get” you (goal, mission, vision, charisma).

Even then, dear insider, they don't always "get" you the way YOU get you.

Maybe they just have this feeling you're definitely singing the right song for the times ... strumming chords they like loud and repeatedly. And so they trust you enough to risk their support....

Nonprofits, patience. Keep your hands on the controls. Settle your expectations. Respect the numbers. New donors may be 1% of the people you approach initially.

 

August 3: Marci and Simone

 

I met Marci first. She'd been in Cambodia, in the Peace Corps, building dams. In the earliest years of charter schools in America, she invited me to a Cambodian restaurant in Lowell, MA; to discuss something about fundraising.

 

I wore my best Irish tie: hand-woven linen. Brand new, too. I looked down to see that narrow tie pointing at Marci, as it floated across my Cambodian soup bowl. Final chapter: Good-linen Irish ties dry-clean nicely.

 

Then Marci met Simone ... and our world shifted on its axis.

 

We became family. CLOSE family.

 

August 3 is our wedding anniversary, Seepy and me. My birthday, too. We purposely married on my birthday so I'd never forget our wedding anniversary. She was so wise.

 

Simone arrives on earth: July 23, 1948 ~ Happy birthday, you

 

June 6, 1944: The Allies force a massive landing across the cold-water beaches of Normandy against heavy German resistance and unfavorable weather.

         World War 2 was entering its final year in Europe.

         There was supposed to be a simultaneous invasion of southern France the same day. It would drive an irresistible anti-Fascist bulldozer north up the Rhône valley, from the Mediterranean to Switzerland. It would pinch German divisions between two well-supplied opposing forces.

         Sounded good on paper.

         But in the end there just weren't enough Allied troops and landing ships to strike France top and bottom at the same time. The southern invasion was postponed. It finally began on August 14, with a massive demonstration of Allied naval and aerial firepower. Troop landings came the next day.

------

Before then, that same August, an intelligent and fit young man was riding his bicycle in a southern French city.

         His name: Georges Joyaux. He'd grown up in "Beautiful Nice," on the French Riviera. Not a child of privilege; far from it. But smart; like his brother, Fernand. Family lore says they'd been a handful in school. Now Georges was himself a teacher in the small Mediterranean port of Menton.

         And now he spotted a checkpoint ahead.

         Germans and French police were stopping everyone, examining papers; fishing for fugitive Jews (this far edge of France harbored many). Fishing, too, for fit, troublemaking-inclined young men on bicycles who might be in the Resistance.

------

The Germans were understandably jumpy.

         Up north, Allied forces rampaged.

         They'd broken out of Normandy. Every battle now went their way. Generals like Patton and Eisenhower and Montgomery were fast becoming legends. The Allies pushed hard to liberate Paris, a huge symbol on the world stage. As long as their war machines were fueled (something of a problem, thanks to clogged northern ports), Allied motorized divisions were unstoppable. Allied pilots owned the skies. Allied troops owned the ground and enjoyed total freedom to maneuver. German forces up north were collapsing fast ... a broken umbrella pelted by exploding hail ... and everyone in southern France knew it. The Allies' amazing propaganda offensive (some of the best war reporters and psych warriors on earth) saw to that.

         Wondering who these "Allies" were?

         D-Day beach swarmers included (in some sort of order) the UK, France, Poland, Canada, Australia, New Zealand, the US, Belgium, Czechoslovakia, Greece, Luxembourg, Netherlands, Norway, South Africa, Southern Rhodesia.

         Vs. Germany and Italy.

         It was the biggest industrialized middle-finger ever built.

------

So Georges is on his bike: no sign yet of the Allies in Southern France. Rumors fly. Insiders know General de Gaulle has argued hard for the capture of major southern ports like Marseilles and Toulon. The French Resistance has been on high alert for months. Relief is in the air.

         And Georges is approaching an inescapable checkpoint, carrying a concealed pistol, which in German eyes was an automatic death sentence.

         As, Andrée, one of Simone's five siblings recounts:

         "I always heard the story as dad saw the Germans and knew he’d get arrested with the pistol. So he faked a spill on his bike near a street drain and threw the pistol down the drain. But of course I may be completely wrong about that!" Sounds successful to my ears.

------

Georges told me the same story. He told me a little bit more.

         When he was stopped, Georges had a quick, frank talk with the French policeman clutching his elbow. In essence: "In a few weeks this will all be over. You know it. I know it. And you will be on the wrong side. So let me go. I'll vouch for you."

         The policeman released his grip. Georges dashed off down a side street.

         And so Simone-of-the-future's semen escaped certain death. She and five fascinating siblings would follow.

         Enter Jane.

------

Life is serendipitous: those you meet; mostly those hoards you don't meet. How many could you meet, after all ... with 8+ billion humans and counting (2023).

         In 1947, what's today called Michigan State University was named Michigan State College of Agriculture and Applied Science. It had been an early pioneer in co-education and integration. It was the first year of the Cold War.

         After the Second World War, Michigan State expanded rapidly. Its visionary president John A. Hannah flooded the campus with ex-serviceman pursuing a college degree on the G.I. Bill. Also included: Allies from European countries. Georges, who'd joined the French army after the invasion, was one.

------

In East Lansing, Michigan, Jane Peckham, artsy and tart; milk-fed and attractive; an accomplished equestrian; finds herself sitting next to a handsome Frenchman with a big laugh: Georges Joyaux.

         Georges pays attention to the lecturer. But she sees he's not taking many notes. She leans over and asks why. "I just write down what I don't know," he replies. Repeat that in your head, with abrupt honesty; spoken with a thick-as-sheep's wool French accent and a shrug. You get the picture.

------

So Jane and Georges met in class. As fairy tales say: Jane and Georges eventually ran up a hill, to get a pail of water.

         To summarize Darwin: What is life really about? Reproduction of the species. Knickers flew the coop. Sim One was conceived. Jane and Georges wed before her birth at Sparrow Hospital in Lansing, Michigan. Simone was intensely proud of being their "love child": the child who sealed the marriage of Georges and Jane.

         Over two decades, another five children would emerge. The last were twins, Andrée and Paul. At which point, Jane turned a flame-thrower on the nearest doc in the delivery room and insisted, "Fix it. No more kids. Do it! Enough. " Her primary care physician was there and nodded: "Do it."

         And so it was done: no more kids. Jane retired her womb.

------

         Or so the family story goes, according to Simone.