The Little Words Mean the Most

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.