Meeting Recap from Deb:

Ever a special evening together, Bookies! —and Jessica, your hosting, deck & home, offered sweetly conclusive summer unanimity. The dinner was scrumptious—and beautiful, consistent with the broader view—and nice the way the pieces always tend to fit to make a tasty meal combo. Unlike some books.  Perfect to pair all the upbeat (seeking balance!) with the less positive reception to BEAR, which clearly did not draw a rousing round of approval—tho’ I really appreciate being in a group that reads closely + feels deeply, and that we can disagree— + fully promote our various perspectives.  

BEAR did sometimes lag & repeat, as was noted, and maybe the main characters didn’t seem to advance much [tho didn’t Danny and Ben help?], but I sure was prime for a book that kept at heart the animal within us, the secrets we humans keep even among our loved ones—and our varied ways of seeing and not seeing (clawing and growling), + the mother/child sis-to-sis dynamics—caring for + getting in the way—relevant stuff to me, for which I’m grateful to Julia Phillips for bringing us this wedding of person & bear —head chomp (Bear turning to Elena for comfort: “It [He!] bit into her to be close, closest, made one.  …wed” . . . The intimacy of it.  The ecstasy.).  Together. Transformed—fairy tale brought to life just up the valley in the San Juans. 

From Margie:

As to Absolution, one of the themes I found most powerful involved the precarious and unpredictable results of our individual moral choices. When we try to “do good,” should we be judged by our intentions or by the consequences of our actions? In order to control those consequences, should we limit our activity to small-scale, well-considered situations? Or should we go big — acting the “lady bountiful” while figuring that there will be impacts both good and bad? 

From Deb:

 An insightful and skilled writer, McDermott, I’d still maintain, spent too long setting up the banality of these military women/wives & their garden parties and healing-fixes in the first half of the book (OK, + miscarriages), but yes, the pace picked up, dynamics kicked in: wahoo! There’s much more could be said about  “helpmeets,” “inconsequential good,” what is assumed & what goes unsaid–friendships!  (“she’s yours.”)

  Meeting wrap up from Deb on Covenant of Water by Verghese:

Agreeing with what’s been praised: such hospitality—comfortable setting from the beautifully evolving porch on through & tasty spread: thank you, Kim—& others for additions, everyone for making last night into a special evening centered on a splendid book (my modifier, not the group’s!).  Though we DID all confirm what a really BEST-ever book-group we are, & that heart-felt consensus feels great.  Differing on elements of THE COVENANT is part of what I value, too: varied perceptions, with solid sources.  Maybe it did go on too long with 2 or 3 too many substories, or could have been trimmed.  Though for me, I don’t want to lose any strands or little forecasters: am wowed by all the perspectives brought to this multi-faceted epic—which seemed even more impressive as each of you contributed from your own areas of expertise (as you were noting, Jessica), & awareness, adding more from studies, travel, priorities, + varied takes on weight, direction & credibility.  I appreciate all that input, feel we could meet again on this one!

Also, a couple points (of dozens possible despite our focused discussion) I want to note: late in the book, when under stress speaking to Mariamma  about Elsie’s leprosy (p. 712), Digby’s old Scottish accent slips into his speech.  At first the words hit me as typos but then the accent was acknowledged: another move that could be considered distracting, or an insightful enlargement!  I love it!  And the way that Mariamma realizes the gift she possesses of being able to look at a 2-D rendering & create it 3-D, at 1^st seems minor but as is often the case w/Verghese, the detail grows in significance as the book progresses.  Plus the way she talks to the Stone Woman, acknowledging it’s not a “tumor of thought” as a component of The Condition that she needs to pursue  (as she pours over Philipose’ 200 journals!), or solving its mystery that she is after, but her mother!  (Then she realizes it’s her mother who has held the cup she has put coins into —the Beggar Woman at the corner!  That’s almost too much?) And how many characters lost their mothers?  Many tracks that might be mapped, intersections flagged. And so much that could be learned—like about Naxalites & changes in medicine, including bedside manner & treatment of patients, as noted–that we got a start on!.

Meeting followup by Deb:

As everyone has noted, a wonderful and well timed, lovely evening together, comfortable & tasty on all levels, Jessica: thank you!   Such a good feeling to have six of us comfortably gathered around a grand new table in such a welcoming colorful chirp-happy yard to take up Jesmyn Ward’s Sing, Unburied, Sing!

—so a few thoughts sifted from our conversation, agreeing that before we disperse next time each person might offer a blurt/blurb/bit to pin to our monthly book report? —additions, edits welcome now, including input from you absent adventurers, too.’ massively misguided painful decisions—w/parallels to prohibition noted—and the extraordinary strength of Cassidy Hutchinson, barely 23 when she was taking in the Oval Rm January-6 events,  we segued from her disclosures of the day to our book, SING. We noted its closing with the youngest child of the book’s three generations, wee Kayla, holding vision, voice, singing the Unburied home—an uplift in the bleak narrative of our country’s injustices, pretense of equality with the end of slavery . . . straying—delving!—into the ongoing strings . . . Relevant.

Noting the narrative weaves in time—past & present (assisted by the dead—Given & Richie), we explored the impact of the multiple voices, which sometimes seemed problematic + generated curiosity about how the story would read from an omniscient viewpoint—observing that probably Ward would be effective from that perspective, too. What we wouldn’t want to lose is the powerful attachment achieved by beginning with JoJo on his 13th b’day when Pop slaughters a goat to cook up for dinner—with JoJo’s help keenly detailed.  Within very few pages we love Jojo, sense his importance to the narrative, his family, little sis Kayla—Michaela (Michael & Leona’s 2^nd child). We plunge into a tangle of relationships among characters we come to know through varied view-points, raising questions about the coherence of addicts (& how tough it is), & thoughts on artist-writers’ license & Ward’s command (+experience with car-sickness & vomit, mother of two!).

A reviewer notes parallels w/Faulkner’s As I Lay Dying, which led to talk about other echoes that Ward acknowledges, including the Odyssey—two tempting trouble-coated sirens bearing Michael home [road-trip reworked from prison now], this a book Ward researched seriously, covering history & places she had not known & now would etch for us—like Parchman Farm, the “work-camp” Pen. She achieves her goals, we seem to agree (although Salvage the Bones might be stronger yet + tougher to read? And Men We Reaped, her memoir offers another personal perspective on racism).  Also, Ward credits her editor as prompter to give voice to 12-yr-old Parchman prisoner Richie as one of the narrators: bring back the dead + bury the dead!  This is not unrelated to vomit, which we also discussed after dinner: throwing up the past, which doesn’t swallow-down digest easy.  [Also, worth adding is that the importance of Pop to Richie went the other way, too (p. 69): that Pop, like his great grandmama was “made a animal.  Until that boy came out on the line until I found myself thinking again.  Worrying about him. Looking out the corner of my eye at him lagging crooked like a ant that’s lost scent.”]  —a reminder that not only is Ward able to drive a strong narrative, but is poetic: P279: “Kayla patted his arm again, but she didn’t ask for another pecan.  Just rubbed him like Pop was a puppy, flea-itching and half-bald, starved for love.”   or 253 in a Jojo Chapter when Pop is providing the “end” to Richie’s story: “He is balanced on his toes, and he could be made of stone. But every part of Pop moves: his hands as he speaks, his shoulders folding forward as softly as a flower wilting at the hottest part of the day.  I’ve never seen them do that.  His face, all the lines of his face, sliding against each other like the fault lines of the great fractured earth.  What undergirds it: pain.  The sledgehammer fallen.” –another place that Ward enlarges beyond a speaker’s likely perceptions. Effectively.

We might have talked more about death—introduced by Jojo at the start, made concrete on p.235: “What happens when you pass away?” he asks. . . . It’s like walking through a door, Jojo, Mam answers. . . .  Death a great mouth set to swallow.  . . . [becoming a ghost] only happens when the dying’s bad. Violent . . . so awful even God can’t bear to watch. … [but not me] I’ll be [here] on the other side of the door.

Character development was generally praised—Pop offering a strong resilient model for Jojo to look-up to, and also embodying such wrenching experiences that it’s hard to fathom the pain of the challenges faced by him and others.  Then, after 282 pages we follow Richie up the tree, get to the birds/feathered leaves/women, men, boys & girls, black, brown, smoke-white baby, —ghosts approached by Kayla (w/a catalogue of atrocities they’ve experienced inserted, p.282); she sings them home.  [and Ward makes sure it registers “the way she takes all the pieces of everybody and holds them together is all her. Kayla” —our history carried with us, & a reminder how things CAN add up—even skipping generations!) The character of Mam & Leonie are comprehensive, too—one the ultimate care-taker, the other “ain’t got the mother instinct . . . She aint never going to feed you” as Leonie’s mother Mama says—and seems at the base of why to Jojo, Gram is Mam, Mama is Leonie, and Jojo nurtures Kayla. We talked a bit too about how Ward doesn’t pin specific causes down, showing how living in poverty as victims of racism takes its toll on many who don’t have the strength of Mam & Pop—like w/brother Stag. An impressive feat, and excellent read.

And CK finds a link back to the main characters of Ward’s earlier book, Salvage the Bones: Ch. 10 (Leonie) page 197: Skeetah & Esch are walking a black dog on a chain on a street in Bois!   What else?   Received 2017 National Book Award!

From MaryAnne: Characters live in watery environment and flooding is a constant threat. Water also shelters dangerous animals and powerful spirits.

Thanks to Deb for an excellent recap:

What a special evening: dinner reunion, astounding book, sweet welcome bit of catching up among us + discussionà eager for us ALL to gather, + still delighting in the book & night—& going to indulge in waxing wordy since I’ve missed after-din responses & we didn’t get to Zoom everyone in!  What a book & evening together!  We all seemed fully impressed with the way Swiv tells the 3-gen- story from her 9-yr old perspective –framed as a letter. or letterS [tho we really didn’t talk about structure much, other than commending the tight knit of details] —mainly a letter to her Dad who has split, Mom—Mooshie—who is freaking out with her geriatric pregnancy & Grandma with one foot in the grave, Gord inside readying for his first appallingly nude [ultrasound] photos!  And where’s Dad? That, Gram says, is the $64,000 question, in her aptly articulated way.   Adventures abound, timing is perfect w/jump cuts prevailing & as noted, knit nicely, too: the two cobalt candle holders Momo gives Gram 2 wks before Momo dies reappearing 200 pages later when nephew Lou has a candle for Gramma to take home to put in those holders from his Auntie. It’s empathetically cast, deadly serious, and LOL funny in a genius way (sure seems Toews’ due a MacArthur!) w/narrator Swiv’s insights uncanny, the language she hears & repeats eerily alive in Toew’s innovative way of conveying dialogue. 

       And besides appreciating the LETTER set-up, the 2 parts are fitting, too—moving from HOME to AWAY w/Swiv & Gram traveling to the USA, to see nephews Lou, who is struggling (in pain?), & Ken, w/Swiv along as caretaker—+ driver of Ken’s convertible [meeting those cool teen guys—ever husband/lover potential!]after Grandma finds her way to the Old Folks Home to see her not-yet-dead friends & does a little dance for them w/a high kick lays her flat, leaves her w/a missing tooth & lisping + broken arm—& ailing heart, maybe ODing on the T-3s she miscounts. Swiv such a care-taker, and Ma-mooshie searching, Toews drawing on her own life w/impressive timing, wisdom, humor, & empathy [!], Gram’s responses to the Lobby caretaker & hospital worker who must bill her for her sling truly respecting the needs of the vulnerable (not lesser but with more at risk)—an amazing feat, + letting the Rat guy who defends rats as just trying to survive also offers his wisdom: divorce breaks you down & you have to reinvent yourself (which Toews also seems to know)—all building to Gram’s “negotiated surrender” already forecast as being timed with Gord’s birth way back at the start [!] . . .   [stop, deb.]

—SO, this book’s genius achievement really gets complicated / extended w/Toew’s unusual (to say the least) “Personal History” essay “THE WAY SHE CLOSED THE DOOR, Facing the past on a frozen river in Winnipeg” in the NYer Feb 14 & 21 issue. Thanks to the reader/s who mentioned it [Laura, Margie ?!]. Talk about an incredible piece of writing—sentences that cover decades + cross continents & marriages, imagining a conversation that didn’t quite take off, back in Paris a decade + earlier, (waiting for a “boyfriend” who wants to be called a husband) a conversation over coffees to hold Toew’s History (not unlike the letter format of FIGHT NIGHT but even more wacky & enjambed).  Anyway, she leaves me marveling, as did dinner: Margie, your multi-faceted Persian feast especially unusual & tasty, setting completely conducive to relaxing & relishing being together unmasked, in person, + reflecting on this amazing book. Deep thanks to each of you for all you bring to our group (even when absent, a sense of you’s with us!).

love, deb — & not to forget Gram’s subversive advice [p20]:

We loved this book! Laura, Deb, Catherine and Margie shared additional information.

The New Yorker reviewer was not quite as taken as we were. https://www.newyorker.com/magazine/2021/10/04/anthony-doerrs-optimism-engine

Literary Mood Board: The delightfully obscure items that inspired Anthony Doerr’s Cloud Cuckoo Land https://ew.com/books/cloud-cuckoo-land-anthony-doerr-literary-mood-board/

NPR Review:Anthony Doerr’s New Novel Spans Centuries, Yet Fits Together Like Clockwork https://www.npr.org/2021/09/28/1041004908/anthony-doerr-cloud-cuckoo-land-review

The New York Review of Books: The Other Rome (Incomplete article here. See Margie’s email for entire article.) https://www.nybooks.com/articles/2022/02/10/the-other-rome-peter-brown/

By Radhika Jones

• Published Feb. 23, 2021Updated March 1, 2021

KLARA AND THE SUN
By Kazuo Ishiguro

About halfway through “Klara and the Sun,” a woman meeting Klara for the first time blurts out the kind of quiet-part-out-loud line we rely on to get our bearings in a novel by Kazuo Ishiguro. “One never knows how to greet a guest like you,” she says. “After all, are you a guest at all? Or do I treat you like a vacuum cleaner?”

This is Ishiguro’s eighth novel, and Klara, who narrates it, is an Artificial Friend, a humanoid machine — short dark hair; kind eyes; distinguished by her powers of observation — who has come to act as companion for 14-year-old Josie. Like that childhood stalwart Corduroy, she’d been sitting in a store, hoping to be chosen by the right child. AFs aren’t tutors. They’re not babysitters (though they’re sometimes chaperones), nor servants (though they’re expected to take commands). They’re nominally friends, but not equals. “You said you’d never get an AF,” Josie’s friend Rick says, accusingly — which makes Klara the mark of some rite of passage they didn’t want to accede to. Her ostensible purpose is to help get Josie through the lonely and difficult years until college. They are lonely because in Josie’s world, most kids don’t go to school but study at home using “oblongs.” They are difficult because Josie suffers from an unspecified illness, about which her mother projects unspecified guilt.

“Klara and the Sun” takes place in the uncomfortably near future, and banal language is redeployed with sinister portent. Elite workers have been “substituted,” their labor now performed by A.I. Clothing and houses are described as “high-rank.” Privileged children are “lifted,” a process meant to optimize them for success. Readers of Ishiguro’s 2005 novel “Never Let Me Go” will viscerally recall the sense of foreboding all this awakens. If I am being cagey about it, it’s to preserve that effect. But for the inhabitants of the novel, the older generation of whom remember the way things were, these conditions have been normalized, to use the banal language of our own era. Here is Josie’s father, a former engineer: “Honestly? I think the substitutions were the best thing that happened to me. … I really believe they helped me to distinguish what’s important from what isn’t. And where I live now, there are many fine people who feel exactly the same way.” Through Klara, we pick up bits of overheard conversation: a mention of “fascistic leanings” here; a reference to Josie’s mysteriously departed sister there; the woman outside the playhouse who protests Klara’s presence: “First they take the jobs. Now they take the seats at the theater?”

For four decades now, Ishiguro has written eloquently about the balancing act of remembering without succumbing irrevocably to the past. Memory and the accounting of memory, its burdens and its reconciliation, have been his subjects. With “Klara and the Sun,” I began to see how he has mastered the adjacent theme of obsolescence. What is it like to inhabit a world whose mores and ideas have passed you by? What happens to the people who must be cast aside in order for others to move forward? The climax of “The Remains of the Day” (1989), Ishiguro’s perfect, Booker Prize-winning novel, pivots on a butler’s realization that his whole life has been wasted in service of a Nazi sympathizer. (“I gave my best to Lord Darlington. I gave him the very best I had to give and now — well — I find I do not have a great deal more left to give.”) A subplot in Ishiguro’s first novel, “A Pale View of Hills” (1982), involves an older teacher in postwar Nagasaki whose former student renounces his way of thinking. “I don’t doubt you were sincere and hard working,” the former student tells him. “I’ve never questioned that for one moment. But it just so happens that your energies were spent in a misguided direction, an evil direction.” In “Never Let Me Go,” clones “complete” after fulfilling their biological purpose. In “Klara and the Sun,” obsolescence reaches its mass conclusion: Whole classes of workers have been replaced by machines, which themselves are subject to replacement. It nearly happens to Klara. In the story’s first section, a new, improved model of AF arrives and bumps her to the back of the store.

“Klara and the Sun” lands in a pandemic world, in which vaccines hold the promise of salvation but the reality of thousands of deaths a day persists, and a substantial portion of the American population deludes itself into thinking it isn’t happening. Our own children have been learning on oblongs and in isolation. The crisis of this novel revolves around whether Josie, with Klara’s help, will recover from her illness — and whether, if Josie doesn’t recover, her mother, with Klara’s help, will survive the loss. It turns out that to “lift” her daughter, to ensure Josie will thrive amid her world’s “savage meritocracies” (I’m quoting from Ishiguro’s 2017 Nobel lecture, an enlightening document as to his state of mind), her mother has knowingly risked Josie’s health, her happiness, her very life — a calculation that sounds terrible on paper until one realizes how common it already is.

Considering the place of “Klara and the Sun” in Ishiguro’s collected works — which cohere astoundingly well, even “The Unconsoled” (1995), powered as it is by the dreamlike absorption and reconciliation of unfamiliar circumstances — I found myself thinking of Thomas Hardy, the way Hardy’s novels, at the end of the 19th century, captured the growing schism between the natural world and the industrialized one, the unclean break that technology makes with the past. Tess Durbeyfield earns her living as a dairymaid before agricultural mechanization, but she channels early strains of what Hardy presciently calls “the ache of modernism.” She represents a mode of being human in nature before machinery got in the way.

Klara is a man-made marvel. She lacks the fluidity of human mobility such that to negotiate a gravel driveway is a project of careful intention. But like the great outdoors, she runs on solar power, and she ventures deliberately into the natural world at critical points in the story, communing with the sun to try to help Josie with matters bigger than either one can comprehend. Klara’s perception, too, is at once mechanical and deeply subjective. Fields of vision appear in squares and panels, so that you can imagine (through her eyes) pictures processed and bitmapped, resolving themselves the way a high-definition image resolves on a screen, but with a shifting focus that seems tied to her interpretation of the events and environment around her. Seeing the world from Klara’s point of view is to be reminded constantly of what it looks like when mediated through technology. That might have felt foreign a century ago, but not anymore.

Klara is likable enough — as she was manufactured to be — but it’s hard to empathize with her on the page, which is maybe the point. The stilted affect that so often characterizes Ishiguro’s prose and dialogue — an incantatory flatness that belies its revelatory ability — serves its literal function. Klara’s machine-ness never recedes. Unlike most of Ishiguro’s first-person narrators, however, she seems incapable of deluding herself. Her technological essence presents some childlike limitations of expression, but are they more pronounced than the limits born of the human desire to repress, or wallow, or come across better than we are? “I believe I have many feelings,” Klara says. “The more I observe, the more feelings become available to me.” This statement had the peculiar effect, on me anyway, not of persuading me of her humanness but of causing me to consider whether humans acquire nameable feelings all that differently from her description. Which is maybe also the point.

In an interview with The Paris Review in 2008, Ishiguro said he thought of “Never Let Me Go” as his cheerful novel. Never mind that it centers on a trio of clones bred specifically to have their organs harvested. “I wanted to show three people who were essentially decent,” he said. Klara carries that quietly heroic mantle. Look at the characters Ishiguro gives voice to: not the human, but the clone; not the lord, but the servant. “Klara and the Sun” complements his brilliant vision, though it doesn’t reach the artistic heights of his past achievements. No moment here touches my heart the way Stevens does, reflecting on his losses in “The Remains of the Day.” Still, when Klara says, “I have my memories to go through and place in the right order,” it strikes the quintessential Ishiguro chord. So what if a machine says it? There’s no narrative instinct more essential, or more human.

Radhika Jones is the editor in chief of Vanity Fair and holds a doctorate in English and comparative literature from Columbia University.

A novelist’s labored speech signaled an unimaginable diagnosis

Sandra G. Boodman
July 10, 2021

At first, novelist Cai Emmons thought something might be wrong with her bite.

In December 2019, while reading from her latest work at a gathering in Sausalito, Calif., Emmons was keenly aware that her voice and speech pattern seemed different than usual. “There was a slight lack of flow and my rhythm was off,” she recalled. No one else seemed to notice anything amiss.

But to Emmons, who lives in Eugene, Ore., the problem was glaring. A self-described “big talker” who had taught creative writing at the University of Oregon, Emmons often gave readings, was deeply involved in the local theater community and had been a college actress. She was determined to find out what was wrong with her voice and do her best to fix it.

And so began a roller-coaster process, complicated by the pandemic, that consumed the next 14 months of her life, concluding with a finding that was both familiar and unimaginable.

“I don’t think anyone wants to make the diagnosis,” Emmons said recently, adding that she regrets not knowing the truth sooner.

“Had I known earlier, I wouldn’t have had to go through all that testing and all those doctor visits,” she said. Equally important, a speedier diagnosis would have enabled her to “bank” her voice to create a synthetic one for future use.

Shifting teeth

In the weeks after the reading, Emmons, then 69, said she became “obsessed with her teeth.” They appeared to have shifted — typical in adulthood — and Emmons worried she had developed a bit of a lisp. She also noticed that the episodic hoarseness she had experienced for a few years seemed to be worsening. She visited her dentist, who found nothing wrong with her bite.

On the advice of a friend, Emmons decided to order invisible aligners, an alternative to traditional metal braces.

“It was pretty expensive but I really wanted to fix this problem,” she said.

She soon discovered that they made her speech sound garbled. After wearing them for several weeks, Emmons stuck them in a drawer.

In May 2020, she had a telehealth appointment with her primary care doctor. He referred her to an ear, nose and throat specialist whom she couldn’t see until July.

In the interim, a friend suggested she call one of his relatives in Ohio who is a physician. The doctor listened to Emmons’s description of her symptoms and told her he suspected she had myasthenia gravis, a rare neuromuscular condition that causes muscle weakness. Speech problems can be a symptom of the disease.

“I kind of bought into his diagnosis,” she said.

The Ohio doctor recommended that she start taking pyridostigmine, a drug used to reduce myasthenia-related muscle weakness.

But it wasn’t clear she actually had the disease: A blood test commonly used to diagnose it was normal.

In July an otolaryngologist examined Emmons’s vocal cords. After he found nothing unusual, he sent her to a Eugene-area neurologist.

A month later, Emmons saw the neurologist, who prescribed a trial of pyridostigmine and ordered additional tests. Among them was electromyography, which involves the insertion of small needles into muscles, including those in Emmons’s tongue, to measure electrical activity and the response to nerve stimulation. The doctor wrote that she wanted to distinguish between myasthenia and “another process causing . . . symptoms, like for example motor neuron disorders.” The best-known of these is amyotrophic lateral sclerosis (ALS), a rare, progressive neurological disease that affects nerve cells in the brain and spinal cord that control movement.

“She definitely said I did not have ALS,” Emmons recalled.

She felt a surge of relief tempered with skepticism. Her former mother-in-law had died of ALS in 1988, and Emmons knew there is no definitive test for the fatal disease.

“When my mother-in-law died, I thought, ‘Well, I don’t have to worry about ALS because, like lightning, it won’t strike twice,’ ” Emmons remembered.

Disordered speech
After essentially ruling out ALS and myasthenia gravis the neurologist, who noted that Emmons was having trouble swallowing, ordered a CT scan of her neck, as well as an MRI of her brain and cervical spine to check for a stroke, tumor or a lesion suggestive of multiple sclerosis. When all were normal, she sent Emmons to a specialized otolaryngologist in Portland, 90 miles north of Eugene.

By then, Emmons said, her focus had shifted to a new possibility: laryngeal or spasmodic dysphonia, a voice disorder caused by involuntary spasms in the larynx that produce a strained or strangled-sounding voice. Emmons’s college roommate, a gynecologist, told her she “sounded just like several of her patients and kept sending me links to it,” the novelist recalled.

But after listening to broadcaster Diane Rehm, who has talked about her nearly career- ending battle with the disorder, Emmons said she became convinced this wasn’t her problem. She was having increasing difficulty forming words, which is not characteristic of spasmodic dysphonia.

Her deteriorating voice made Emmons feel uncharacteristically self-conscious. She shied away from readings, public speaking or interviews, fearing that her labored, stilted-sounding speech might make listeners question her intelligence.

In January 2021, Emmons, accompanied by her partner of 20 years, playwright Paul Calandrino, saw a laryngeal specialist at Oregon Health & Science University, the state’s only academic medical center.

He immediately ruled out spasmodic dysphonia and asked Emmons whether she had experienced inappropriate laughing or crying jags.

“I hadn’t ID’d this as something strange until he asked me,” Emmons recalled. “I asked him, ‘Why do you ask?’ and he replied that he thought I might have a pseudobulbar palsy.”

Pseudobulbar disorders affect the ability to control facial muscles and have a variety of causes, including stroke. The ENT did not elaborate and told Emmons he was sending her to a colleague who is a neurologist.

“I think he knew what was wrong, but didn’t feel that he was in a position to diagnose it,” she said. “And he knew I didn’t know. He was very attentive and made sure I had good follow-up appointments.”

‘It broke my heart’
About 10 days before the meeting with the Portland neurologist, Emmons kept an appointment she had made earlier with a second neurologist in Eugene. The doctor ordered testing so extensive it required 15 vials of blood. Several days later, Emmons learned that nothing had been found; the doctor could not explain her worsening symptoms.

That changed when Emmons saw Nizar Chahin and the young doctor working with him.

The junior doctor examined Emmons first. Chahin then joined them, repeating parts of the physical exam. He asked Emmons if he could inspect the tops of her legs, then stared intently at her thighs for what seemed like five minutes. What, she asked, was he looking for?

Fasciculations, he responded, referring to the myriad brief involuntary muscle twitches he had observed. Then Chahin gently asked Emmons whether she had heard of bulbar-onset ALS. She burst into tears. “It broke my heart,” Chahin recalled.

Most cases of ALS are classified as “limb onset” because they initially affect the extremities, often the legs. But about 30 percent are “bulbar-onset” because they first manifest in the head, specifically in muscles that control speech and swallowing. Fasciculations, or persistent muscle twitches when accompanied by muscle weakness, are a common sign of all forms of ALS, but occur later in bulbar-onset disease. (They should not be confused with benign fasciculations like an eye twitch, a nearly universal, harmless phenomenon.)

Bulbar onset is regarded as a more aggressive form of ALS, which strikes about 5,000 Americans annually. In most cases, the disease seems to occur randomly; a genetic form is believed to account for about 15 percent of cases.

Although bulbar-onset ALS is more difficult to diagnose than limb-onset disease, Chahin said he is puzzled that neurologists missed it. Difficulty forming words and swallowing are classic symptoms.

Emmons was also experiencing widespread fasciculations along with muscle atrophy, foot drop and abnormal reflexes, in addition to inappropriate involuntary displays of emotion known as “pseudobulbar affect.” All can be signs of ALS.

A second EMG performed at OHSU a few weeks later was abnormal and confirmed the diagnosis. Chahin, who directs the university’s ALS clinic and has seen more than 700 people with the disease, speculated that the first EMG and swallowing study may have been misread.

“These studies are very subjective,” he said.

Emmons said that even though Chahin and his fellow delivered shockingly bad news to her and Calandrino, both doctors were “really wonderful . . . they made us feel very cared for.”

The couple travel to Portland every three months to attend OHSU’s multidisciplinary ALS clinic. Chahin said that one of his patients with bulbar-onset ALS has lived for six years. Emmons’s breathing, he said, is “very, very good — so that’s a good sign.” Emmons has begun taking medications to treat the disease.

Ten days after the diagnosis, on Valentine’s Day 2021, the couple married.

They are trying to derive pleasure and comfort from time spent with friends and family and their shared experiences. Both laugh at the memory of their shellshocked drive home after receiving the diagnosis.

They stopped at a high-end mall along the route and tried to distract themselves by buying a candle and a sweater. As the clerk was wrapping the items, she innocently inquired, “So how’s your day going?”

Emmons recently bought an assistive communication device that can translate eye movements into speech. Her voice has continued to falter and she says “it takes me forever to eat now” because of deterioration in the muscles that control swallowing.

Her next novel is scheduled for publication in September. Several friends have agreed to appear in her stead at readings. And her sister’s voice will be her synthetic voice when speech becomes too difficult.

One of the hardest things, Emmons maintained, is “dealing with other peoples’ assumptions” — namely that her impaired voice equals an impaired brain.

During a recent coronavirus test before a medical procedure Emmons said the nurse “spoke at top volume like I was in kindergarten.”

She said she hopes her experience will alert others to the lesser-known form of ALS, enabling them to seek effective treatment earlier that might slow progression of the disease.

“There were many steps along the way where something was proclaimed to be normal, but turned out not to be, ” she said.

Keep up with Cai’s latest essays on Medium https://caiemmons.medium.com/