1/10/2019

MY READING/LISTENING, 2018

2018 READING


(For some reason, the first line of each paragraph is longer than the rest. Looks okay on a desktop monitor, but on mobile that first line continues off-screen to the right. Attempts to correct it haven't succeeded. Other formatting glitches and idiosyncrasies have been cleaned up, I'm pretty sure.)

My reading in 2018 was as usual a mixed bag, mostly fiction and some non-fiction, ranging from works published in the last few years to work from decades ago. Some I read in printed editions, others in digital format on my smartphone. A fairly large number were listened to as audiobooks.

(My workplace allows listening to music or audiobooks so long as one ear is left unobstructed; so a Bluetooth earpiece lets me add an extra book to my “reading” about every one to two weeks.)


I also listen to a pretty large number of fiction podcasts, but that adds up to somewhere around 400-500 short stories a year, and read probably around half a dozen or so short story anthologies above and beyond that. I haven’t kept lists of those like I have longer works. If I manage to somehow get myself super-organized in the coming year, I might maintain a list of podcasts and stories I particularly enjoy.

Podcasts I listen to: Lightspeed, Clarkesworld, Nightmare, Strange Horizons, Uncanny, Beneath Ceaseless Skies, Toasted Cake and (under the Escape Artists umbrella) EscapePod, PodCastle,and PseudoPod. 2018 also saw the return of Norm Sherman’s Drabblecast (“Strange stories by strange authors for strange listeners”), which I’ve found highly enjoyable. Outside the dedicated SF/F/H podcasts, I also listen to the mystery podcasts from Alfred Hitchcock and Ellery Queen magazines, the New Yorker’s The Writer’s Voice, the BBC’s Drama of the Week, and Levar Burton Reads. (Burton chooses a fairly large share of SF/F stories to read, but not exclusively.)


A complete reading list for 2018 will be below, but the following were books I particularly enjoyed:

DAUGHTER OF MYSTERY by Heather Rose Jones was probably my favorite of 2018. Some books and writers get buzz and reputation by emphasizing one particular aspect of storytelling; plot, setting, characters, worldbuilding. What particularly struck me about DOM was how well balanced all those aspects were. Every page of this swords-and-manners (with Fantasy Lite aspects) story ran smoothly; it allowed me to fall fully into the story, to not be aware there was a writer pulling strings behind everything. Excellently done, and I have several more of Jones’ books in my TBR pile now.

A pair of outstanding novellas, THE ARMORED SAINT and THE QUEEN OF CROWS, came from Myke Cole in 2018, the first two parts of a trilogy. Medieval-style setting with a brutal theocracy that will straight up murder individuals or entire towns suspected of  being tainted with deviltry. A young woman, Heloise, comes into possession of a suit of powered (via a steam-engine-like technology) armor and is reluctantly forced into revolt against the theocracy. Cole pulls no punches about the costs involved in such a revolt; lives are upended, homes destroyed, friendships betrayed, loved ones lost, even many who survive still suffer injury and maiming. The mental and emotional toll on Heloise and others is also brought out. One aspect of Heloise’s world that Cole hasn’t focused on so far is that the “devils” are real, ripping into our world (literally, through the bodies of the possessed) and wreaking murderous havoc; so the theocracy, despite its brutality and corruption, actually is protecting the world from chaos. If Heloise’ revolt is successful, what would replace the theocracy and its protection? Perhaps that question will be one of the complications in the forthcoming final part of the trilogy.


  • Some other books I read with notably grim, violent settings and situations included:TRAIL OF LIGHTNING by Rebecca Roanhorse. In an altered America where gods and magic have returned to Native American lands, monsters have returned as well. A young woman raised by a demigod to hunt and kill monsters has to deal with outsider and abandonment issues, plus past trauma. She serves the People, but is not fully one of them.
  • THE STARS ARE LEGION by Kameron Hurley. I will confess, I found the cosmology of Hurley’s universe in TSAL difficult to grasp. But it seems in the far, far future when much of the natural universe has gone cold and dark, there are enclaves of created systems and planets, with almost continuous war between planets for scarce and dwindling resources. Life is struggle on both larger and smaller scales, and ruthlessness is a virtue and a necessity. I found the book engrossing regardless, in part because the society and background were so mysterious and disturbing.
  • UNDER THE PENDULUM SUN by Jeanette Ng was another book where the background and society were uncertain, but in this case that uncertainty is an integral and deliberate part of the book. The lands of Fae are real, reachable by ships that have found themselves lost upon the sea. Ways to become deliberately lost enable a measure of trade and commerce with the Fae. In addition to such commercial interests, missionaries travel to the Faelands to try to convert the heathen Fae to Christianity, with exceedingly rare success. The sister of one such missionary follows him to Fae, where she finds the “reality” of Fae lands is very flexible indeed, an uncertainty matched only by the (malicious?) fickleness and mystery of the Fae themselves. This is a grimness of the mind, and both brother and sister find their own weaknesses, exacerbated by the strange and uncertain land and beings around them, lead them into unwise actions and decisions.
  • Another work of psychological grimness is FORTRESS AT THE END OF TIME by J.M. McDermott. “Travel” between stars is accomplished by sending data to duplicates a person’s body and mind at the receiving end; from the original’s viewpoint nothing has happened but the duplicate will spend the rest of its life at the destination point. FATEOT takes place in a military space station orbiting a harsh planet at the ass-end of nowhere, listening for signs of an alien enemy that may never come. I caught notes of Dostoevsky, Kafka and Joseph Conrad in the style and narrative, though McDermott cites THE TARTAR STEPPE by Dino Buzzati and THE OPPOSING SHORE by Julian Graq as the major influences.

If you haven’t guessed by now, I don’t mind grim in my reading. (Though I don’t really like the term “grimdark”; somehow, for me, the term seems just a bit coy and… twee?)


Less grim, but with plenty of more traditional action and political maneuvering:
  • MEDUSA UPLOADED by Emily Devenport
  • THE TIGER’S DAUGHTER by K. Arsenault Rivera
  • BEHIND THE THRONE by K.B. Wagers
  • A DARKER SHADE OF MAGIC, by V.E. Schwab
  • BINTI by Nnedi Okorafor
  • THE ACCIDENTAL WAR, by Walter Jon Williams

In a lighter tone, I enjoyed Marshall Ryan Maresca’s LADY HENTERMAN’S WARDROBE, second in his “Streets of Maradaine” series. Think the tv series LEVERAGE set in a well-developed fantasy world and city. (Maresca has several other series, with different characters and premises, set in Maradaine.) When their neighborhood is burned out by arson (in the first volume, THE HOVER ALLEY CREW), a group of criminals and former criminals join together to try and find out the reasons and perpetrators behind the devastating fire. Break-ins, chases, disguises and deceptions ensue. As is common for breakneck caper stories, the clever plans only work until Something Goes Wrong, with a mad scramble to improvise their way out of disaster quickly following. Very enjoyable and well-written.


Among the stories in THE PEOPLE’S REPUBLIC OF EVERYTHING, a collection by Nick Mamatas, I particularly enjoyed the short novel “Under My Roof”. wherein a suburban father builds a DIY nuclear bomb, then declares his house and the lot it stands on a separate country. The absurdity is further heightened by the family’s young son, secretly a powerful mind-reader whose wry sardonic commentary on the real thoughts and motives of other characters adds much to the comedy.


Among the older books I read or re-read in 2018 was Walter M. Miller Jr.’s A CANTICLE FOR LEIBOWITZ. There’ve been a number of online discussion and essays the last decade or so over how many of the “Classic” SF or fantasy works are still exemplary or at least satisfying, and how many have been visited by the Suck Fairy upon reading in the present day. (Heinlein’s name and works tends to be mentioned a lot in those discussions.) Re-reading CANTICLE after about fifty years, I found it held up very well. Basic premise, for any I’d-lose-at-Jeopardy people reading this: Three linked novellas, roughly 600, 1200 and 1800 years after a nuclear war (the “Flame Deluge”) devastates Earth, followed by social upheaval among survivors that destroys most remaining knowledge and technology. Each story centers around the monastery of the Blessed (later Saint) Leibowitz, where a relative few salvaged shreds of knowledge, documents and books have been preserved and copied and re-copied for centuries.  Each section deals with how the monastery, and the beliefs and faith of the monks doing its work, react to game-changing developments: a trove of pre-nuclear documents, some relating directly to the life of Leibowitz, is discovered; six centuries later, science and technology are making a comeback, but threatened by the return of large nation-states and large-scale war; and, in the final section, science has advanced past the level existing before the Flame Deluge, making space travel a possibility, but also enabling the return of nuclear weapons which may destroy the Earth a second and final time before generation ships can establish new human footholds on other planets. Miller’s characters deal with doubt and uncertainty about their choices and beliefs in a dangerous and risky world. No Suck Fairy here.

Most of my reading is in the SF or Fantasy genres, but I also read occasionally in other genres, particularly mysteries and suspense. An older mystery I enjoyed was Philip Kerr’s 1989 MARCH VIOLETS. Set in 1930’s Germany when the Nazi party was consolidating its hold over German society, a private detective has to navigate corrupt bureaucracies and police, and the criminal underworld, in the course of investigating a murder and theft. Reading about the gradual normalization and acceptance of Nazi programs and atrocities was disturbing, not least because the events and history portrayed in Kerr’s novel parallel in many ways the actions of America’s own Trump administration.

Jordan Harper’s debut suspense novel SHE RIDES SHOTGUN was a thrill ride of a story. A somewhat ambivalent member of a white power prison gang, days before his scheduled release, has to kill one of the other members in self-defense. (Harper doesn’t go deeply how much his protagonist really buys into the white supremacist mindset -- in large part because for most of the book simple survival is the top and only priority --  but it seems he signed on primarily because in prison you either belong to a gang or you’re prey.) In result, a “kill order” is issued (including to members outside the prison) not only on him, but also on his entire family, the ex-wife and daughter left behind when he entered prison. He walks out of prison barely in time to avoid dying there, isn’t able to save his ex-wife but swoops up his pre-teen daughter just as she gets out of school. It’s a race to stay ahead of an entire gang focused on murdering them. When it becomes clear the pursuit will not stop until he and his daughter are dead, the decision is made to stop running away and fight back. To do that, he had to teach his daughter how to fight, how to shoot, how to kill. The bond between father and daughter, negligible at first, grows throughout the process and training. But what is that training doing to the girl’s bonds and relationship with society at large?

Two non-fiction books I particularly enjoyed:

ASSASSINATION VACATION by Sarah Vowell. I actually listened to the audiobook by mistake, having borrowed it from Overdrive having somehow thought it was a theme anthology of crime stories. No, actually it’s Vowell’s travelogue of sites relating to Presidential assassinations, with lots of interesting history and trivia along the way. But it’s also at times hilariously funny, because of Vowell’s self-deprecating humor. (She recognizes being obsessed with assassinations is a Pretty Freaking Weird hobby.)

UNDER THE RED SEA SUN by Edward Ellsberg. In 1942, the essential port of Massawa in Eritrea on the Red Sea was taken from the Italian forces that had occupied it, but not before the Italians blocked the port’s use by scuttling and booby-trapping numerous ships and the on-shore shops and facilities. Ellsberg, a maritime salvage expert was given the “impossible” task of reclaiming the port for use by the Allies, but with virtually no men, no equipment and no money, further complicated by corruption and incompetence in the military and civilian bureaucracies. A fascinating memoir of resourcefulness and ingenuity in the face of nearly overwhelming obstacles.


Full list for 2018:


JANUARY
Company of Lies, Karen Maitland
The Great West Detective Agency, Jackson Lowry (Robert Vardeman)
The Stars Are Legion, Kameron Hurley
Jane Steele, Lindsay Faye
The Wrong Stars, Tim Pratt


FEBRUARY
The Darkest Part of the Forest, Holly Black
Artemis, Andy Weir
Daughter of Mystery, Heather Rose Jones
Fortress At the End of Time, J.M. McDermott
Voyage of the Basilisk, Marie Brennan


MARCH
Rosemary and Rue, Seanan McGuire
Bitter Greens, Kate Forsyth
The Moving Target, Ross MacDonald
Lady Henterman's Wardrobe, Marshall Ryan Maresca
Altered America, Cat Rambo
Station Eleven, Emily St. John Mandel
Quillifer, Walter Jon Williams


APRIL
Assassination Vacation, Sarah Vowell
Before I Fall, Lauren Oliver
Gone Girl, Gillian Flynn
The Starlit Wood, Ed. Wolfe & ???


MAY
Beneath the Sugar Sky, Seanan McGuire
Hunger Makes The Wolf, Alex Wells
Aegypt, John Crowley
Alternate Routes, Tim Powers
Matchup, ed. Lee Child
She Rides Shotgun, Jordan Harper
The Armored Saint, Myke Cole


JUNE
The Serpent of Venice, Christopher Moore
Dogs Don't Lie, Clea Simon
March Violets, Philip Kerr
Medusa Uploaded, Emily Devenport
Hall of Heroes, ed. Fellowship of Fantasy


JULY
A Fierce Radiance, Lauren Belfer
The Tiger's Daughter, K Arsenault Rivera
Last Hope Island, Lynne Olson


AUGUST
The Paper Menagerie, Ken Liu
Behind the Throne, K.B. Wagers
Binti, Nnedi Okorafor
SPQR, Mary Beard
The City Stained Red, Sam Sykes
Stone Mad, Elizabeth Bear


SEPTEMBER
Night Has A Thousand Eyes, Cornell Woolrich
Sparrow Hill Road, Seanan McGuire
Trail of Lightning, Rebecca Roanhorse
A Darker Shade of Magic, V. E. Schwab
The Accidental War, Walter Jon Williams


OCTOBER
Trouble Is My Business, Raymond Chandler
Akata Witch, Nnedi Okorafor
Selections from Dreamsongs, Vol. 1 (audio), George RR Martin
The Cobbler's Boy, Elizabeth Bear & Katherine Addison
The Lucky Stiff, Craig Rice
The Ballad of Black Tom, Victor Lavalle
Under the Red Sea Sun, Edward Ellsberg
The Queen of Crows, Myke Cole


NOVEMBER
Space Opera, Cat Valente
Wayward Saint, J.S. Morning
Penric's Demon, Lois McMaster Bujold
The People's Republic of Everything, Nick Mamatas
How To Stop Time, Matt Haig
Gallows View, Peter Dickinson


DECEMBER
Dreadnought, Cherie Priest
Amberlough, Lara Elena Donnelly
Under the Pendulum Sun, Jeanette Ng
A Canticle For Leibowitz, Walter M. Miller Jr.
Forty Thieves, Thomas Perry
The Anubis Gates, Tim Powers


And by author:


The Cobbler's Boy, Elizabeth Bear & Katherine Addison
Stone Mad, Elizabeth Bear
SPQR, Mary Beard
A Fierce Radiance, Lauren Belfer
The Darkest Part of the Forest, Holly Black
Voyage of the Basilisk, Marie Brennan
Penric's Demon, Lois McMaster Bujold
Trouble Is My Business, Raymond Chandler
Matchup, ed. Lee Child
The Armored Saint, Myke Cole
The Queen of Crows, Myke Cole
Aegypt, John Crowley
Medusa Uploaded, Emily Devenport
Gallows View, Peter Dickinson
Amberlough, Lara Elena Donnelly
Under the Red Sea Sun, Edward Ellsberg
Jane Steele, Lindsay Faye
Hall of Heroes, ed. Fellowship of Fantasy
Gone Girl, Gillian Flynn
Bitter Greens, Kate Forsyth
How To Stop Time, Matt Haig
She Rides Shotgun, Jordan Harper
The Stars Are Legion, Kameron Hurley
Daughter of Mystery, Heather Rose Jones
March Violets, Philip Kerr
The Ballad of Black Tom, Victor Lavalle
The Paper Menagerie, Ken Liu
The Great West Detective Agency, Jackson Lowry (Robert Vardeman)
The Moving Target, Ross MacDonald
Company of Lies, Karen Maitland
The People's Republic of Everything, Nick Mamatas
Lady Henterman's Wardrobe, Marshall Ryan Maresca
Selections from Dreamsongs, Vol. 1 (audio), George RR Martin
Fortress At the End of Time, J.M. McDermott
Beneath the Sugar Sky, Seanan McGuire
Rosemary and Rue, Seanan McGuire
Sparrow Hill Road, Seanan McGuire
A Canticle For Leibowitz, Walter M. Miller Jr.
The Serpent of Venice, Christopher Moore
Wayward Saint, J.S. Morning
Under the Pendulum Sun, Jeanette Ng
Akata Witch, Nnedi Okorafor
Binti, Nnedi Okorafor
Before I Fall, Lauren Oliver
Last Hope Island, Lynne Olson
The Starlit Wood, ed. Dominik Parisien & Navah Wolfe
Forty Thieves, Thomas Perry
Alternate Routes, Tim Powers
The Anubis Gates, Tim Powers
The Wrong Stars, Tim Pratt
Dreadnought, Cherie Priest
Altered America, Cat Rambo
The Lucky Stiff, Craig Rice
The Tiger's Daughter, K Arsenault Rivera
Trail of Lightning, Rebecca Roanhorse
A Darker Shade of Magic, V. E. Schwab
Dogs Don't Lie, Clea Simon
Station Eleven, Emily St. John Mandel
The City Stained Red, Sam Sykes
Space Opera, Cat Valente
Assassination Vacation, Sarah Vowell
Behind the Throne, K.B. Wagers
Artemis, Andy Weir
Hunger Makes The Wolf, Alex Wells
The Accidental War, Walter Jon Williams
Quillifer, Walter Jon Williams
Night Has A Thousand Eyes, Cornell Woolrich

8/29/2018

Update to "The New Normal: Living Under the Sword of Damocles"

Back in May, I wrote a post, "The New Normal: Living Under the Sword of Damocles", detailing medical issues that posed a potentially fatal danger for my wife Hilde. At that time, we were postponing surgery until further developments made the situation even more critical. (Failing sections of cervical reconstruction hardware from a 2001 surgery had shifted to where there was a large lump and a pinhole-sized tear on the back of her neck, creating a potential entry point for spinal cord or brain infection.)

That "further development" happened in June, when further shifting enlarged the tear and allowed actual metal to come out through Hilde's neck skin.

(I have photos I took to let Hilde see what was happening back there, but they're kind of alarming -- "Oh  shit, your wife is a Terminator! Run, Bruce, run!" -- so I won't post any. The full piece of hardware was several inches long and about the width and thickness of a popsicle stick, but only about 3mm of the tip projected outside her skin. That was plenty alarming, though, he understated.)

So... more x-rays, tests, consultations with her doctors at Mayo, etc. While those were going on, we kept the wound slathered with antibiotic ointment and covered with a dressing; super-stretchy surgical tubing, worn like a headband, kept the gauze pad in location on the awkward spot.

We also used the weeks while a surgical plan was developed to try to prepare for the worst possible outcomes. We had our wills updated, set up a living trust for our property and possessions, and had Durable Power of Attorney and Advanced Medical Directives drawn up so decisions could be made and documents signed in the event of our incapacitation. (This was all stuff we should have gotten done much sooner, but I guess it took a medical crisis to build our motivation to critical mass. Don't wait 'til the last moment yourself, folks!)

The Plan B for surgery that eventually developed was less drastic than originally envisioned. The original plan intended to remove most or all the failing hardware, but this would also leave Hilde's neck and spinal column in a precarious condition, likely to eventually fail and result in quadriplegia and/or death.

Plan B was to leave most of the hardware "Abandoned In Place". The actual projecting piece of metal (and its matching piece on the right side of Hilde's neck, which was close to coming through the skin there) would be trimmed back as far as was safe, a plastic surgeon would take a thin flap from the trapezius muscle and place it over the surgical area (this increases blood flow and promotes healing; it was expected that Hilde's normal wound recovery ability would be compromised by years of steroid medications), and the wound closed.

Plan B would mean a shorter time in surgery, less trauma to her body, and *some* reduction in risks and complications. Less chance of the neck destabilizing post-surgery, for one. But the neurosurgeon's primary concern was over the stenosis in Hilde's cervical spine (the "dog-leg turn" I mentioned in the May post) that was already putting pressure on her spinal cord in several places; her fear was that anesthesia might cause Hilde's blood pressure to crash, reducing blood flow to the already restricted parts of the spinal cord and starving it of oxygen, which might still result in quadriplegia or death. So... less risky, but still a high-risk surgery.

The Plan B surgery took place, yesterday, August 28th. Let's skip any more suspense: the surgery was successful; Hilde came out of it awake and aware and without losing the rest of mobility and movement she has left after fifty years of rheumatoid arthritis.

Not without a few moments of drama, though. When Hilde was turned over for the surgery, the crash in blood pressure the neurosurgeon had feared began to occur. But they were able to reposition her and get the BP back up to acceptable levels before any permanent damage occurred, and the rest of the operation went smoothly. The trapezius-flap procedure was left undone; Hilde's skin and muscle tone looked better than expected and skipping the procedure shortened the time in surgery and reduced the possibility of further blood pressure problems.

So... it looks like we'll end up with a reset to the end of last year, before the skin tear developed. This is, to put it very lightly, a relief. But the months of anxiety and dread (at least on my part; Hilde was stoic, I was terrified) came with a few lessons:

Most importantly, get your affairs and papers in order now. Even though this was a slowly building crisis, one that gave us months to try and prepare for the worst, there's always things you'll forget or not get done. Spending part of last weekend drawing up a list of people to notify if Hilde died in surgery was not a fun activity, but one that had to be done. If this had developed as a sudden emergency, we'd have been much more unprepared.

I'd probably have been more efficient at preparing for the worst if I hadn't resisted taking anti-anxiety medication. There were so many times I felt close to panic; it's hard to focus when your mind keeps going "What if...? What if...? What if...?" and it feels like a pile of rocks is sitting on your chest.

Thanks to everyone who gave us their best wishes and hopes during this time.

5/08/2018

The New Normal: Living Under the Sword of Damocles

Over on Twitter during the last several months, I've made several vague allusions to "medical issues" Hilde and I have been dealing with. Those issues have reached a point of (current) stability that I finally feel able to write about.

Hilde's had severe Rheumatoid Arthritis for fifty years, since she was 22. The RA has worn at and worn down her body and ability to use it ever since, and has made her become progressively more and more disabled and dependent.

Back in 2001, the RA looked like it might literally kill her. Her C-1 vertebrae, at the top of the spine, had degraded to the point it was beginning to break apart, allowing her skull and brain to begin moving downwards. In the neurosurgeon's memorable phrase, her brain would be "pithed like a laboratory frog". Without reconstructive surgery, he estimated her life expectancy as two weeks to six months (but most of that six months would be as a brain-damaged quadriplegic). The surgery itself was not without risk, with a 1-in-7 chance of dying on the operating table.

That surgery was done, Hilde survived, and for seventeen years her neck has been held together with wires and rods and screws. Her neurosurgeon has said most people who have that type of operation gain another 2-5 years of life, so she's beaten those odds several times over. (When we've seen the neurosurgeon every few years for follow-ups, we get the impression he'd like to put Hilde in a big glass box and take her to medical conferences to show off to other doctors.)

BUT... when hardware's been in a body that long, things happen. It degrades. It shifts. It breaks.

About 7-8 years ago, Hilde began to get a couple of small lumps on the back of her neck. X-rays revealed some of the surgical screws were slowly working their way loose and trying to back out of their holes. We were advised that it was something to keep an eye on, but not anything critical or dangerous at that point. We had another follow-up in 2015, when the lumps had gotten slightly larger. At that appointment, we were told that a second reconstructive surgery would be much more dangerous, with only 50/50 odds of surviving the operation. We were advised that unless the shifting hardware got to the point where it punctured the skin and provided a potential entry point for spinal cord or brain infections, surgery probably shouldn't be considered an option.

That point was reached in late January of this year; one of the lumps on Hilde's neck had increased in size dramatically over the previous month or so, stretching the skin to the point that a small tear, about pinhead size, opened up.

So, since then, we've been doing our best to keep that opening clean and free of infection, treating it daily with antibiotic ointment, while we've been consulting the neurosurgery department at the Phoenix branch of the Mayo Clinic. (Hilde wants any future surgeries done at Mayo because the quality of care is much higher than other hospitals -- like, a lot -- she's been in over the years.)

The findings from x-rays, cat scans, MRIs, bone density scans, etcetera, have been... not good.

Essentially, by this point, all the hardware in Hilde's neck has failed, coming loose or broken, and what's probably continuing to hold Hilde's neck together is the scar tissue from the 2001 surgery. To go in to remove the failed hardware would entail cutting through that scar tissue, probably resulting in further destabilization of the neck and spine, leading to further complications ranging from chronic neck pain to quadriplegia to death.

Further, Hilde's bone density (after fifty years of RA and steroid meds) is officially osteoporotic, and the Mayo surgeon feels attempting to install fresh hardware would either fail quickly or possibly be unable to do at all.

Plus... the MRI showed that Hilde's upper spine, rather than being a smooth curve, has a slight dog-leg bend (something like the dog-leg chisel shown at this link) that's already putting compression on her spinal cord in two places. Dealing with that would be a further complication and increased risk for surgery.

So... the recommendation has been to not attempt surgery at this point, but to continue treating the skin break on Hilde's neck and avoid infection. Which is what we're doing.

But at some point, Something Will Happen. A germ might get lucky and start an infection despite our efforts. More of Hilde's internal hardware will move and shift and create a critical situation. That compression on Hilde's spinal cord might increase and create its own crisis. At that point, assuming Hilde survives whatever critical failure occurs, postponing surgery may not be an option. And, if she survives that surgery, it's very uncertain what quality or how long a life she might have afterwards.

So that's our New Normal.

(Added: This has been the Biggest Bad in our lives since January. Hilde's also had a slew of other, unrelated issues since November, including two hospital stays, hearing problems, and losing the remaining functionality in her left arm, which last has left her unable to hold or read printed books anymore. She also can't use touchscreens or a mouse to use an ereader, so she's currently feeding her book jones with audiobooks that I or Tabbi start or stop for her. There's a new control-with-head-movements program that looks like it might make it feasible for her to use a tablet, but it's been difficult and frustrating for her to try and learn.)