Filed under: Alzheimer's, Amazon, Feedback, Health, Kindle, NPR, Preparedness, Society | Tags: Amazon, blogging, care-giving, caregiving, cerebral palsy, dementia, feedback, free, health, Her Final Year, hospice, jim downey, John Bourke, Kindle, KXJZ, NPR, predictions, promotion, reviews, stroke
NPR recently did a very good series looking at family caregivers — those who are caring for a family member who has dementia or has suffered a sudden serious illness/injury or lives with a challenging birth defect. I thought that it was particularly good in highlighting how the traditional image we have of caregivers has been changing. Installments in the series concerned parents caring for a 16 year-old son with cerebral palsy, a 46 year-old woman caring for her sister who suffered a devastating stroke (as well as their father who has dementia), and a retired man who cares for his wife of 42 years who has dementia.
None of it is easy to listen to. None of it is easy to contemplate. I think all of us shy away from the thought of such a responsibility. I think all of us wonder whether or not we would be adequate to the challenge of caring for someone at this level.
Three years ago we published Her Final Year. In that time the book has been downloaded nearly 10,000 times. And when people read it, they find it a huge help, as seen in reviews and in plenty of comments which people have made to us.
But I know that many of those 10,000 downloads, perhaps even most of them, have never been read. Many people are so daunted by the idea of caregiving that they just can’t bring themselves to read the book. I know a couple of people who are currently *in* a caregiving role who haven’t been able to bring themselves to open the book, because they’re afraid that they can’t face the experience.
I understand this. Contemplating being a caregiver … or being someone who needs a caregiver … is frightening. The experience is incredibly stressful. Exhausting. Financially difficult. That comes through in the NPR series, and in our book. In spades. From the second story cited above:
“The experience for these caregivers is quite burdensome, emotionally and physically,” Hoffman says.
The work these family caregivers are doing would be enormously expensive if their loved ones were instead in nursing homes or other institutions, Hoffman says. But the caregivers also often find they must cut their hours at work or, as in Loretta’s case, give up outside jobs in order to care for their relatives.
“In effect,” Hoffman says, “we are taking care of the most vulnerable in our society — aging adults who have chronic care needs — by placing the burden on the backs of some of the people who can least afford to do … those who are themselves economically fragile and vulnerable.”
Little wonder people don’t want to picture themselves in that role. It’d scare the hell out of anyone with any sense.
But you know what? There are also incredible rewards which come from caregiving. It may be hard to believe, but as hard as the experience is, there are real benefits. We try and convey that in the book. I try to explain to people how I am a much better person now for having gone through that. And that I would not wish to go back and erase those difficult years for anything. But here’s a bit from the third story cited above which illustrates what I mean:
Dementia has transformed her into someone who’s dependent and vulnerable. That’s triggering changes within Rick, too. He’s noticed himself gravitating toward traits Marianne was known for, like empathy.
“The importance of listening and caring for others. Now I can see why that is so important and why you can go through life just giving and feeling totally satisfied. You know, that’s a good thing,” Rick says.
Marianne may no longer be the woman Rick married, but he says she’s still helping him become a better husband.
Three years. The actual anniversary is July 15th. And Her Final Year will be available for free download starting that day and going through the 17th. Please, download it.
But more importantly, read it.
Filed under: Amazon, Connections, Emergency, Feedback, Flu, General Musings, Health, Kindle, Marketing, NPR, Pandemic, Plague, Predictions, Preparedness, Promotion, Science, Science Fiction | Tags: Amazon, anthrax, blogging, CDC, CNN, Communion of Dreams, Ebola, FDA, feedback, free, health, jim downey, Kindle, medicine, NIH, NPR, predictions, promotion, reviews, Sarin, science, Science Fiction, serendipity, Smallpox, St. Cybi's Well, WHO, writing
First, thanks again to one and all for helping to make my recent promotion a success! We did finish the weekend with just under 500 total downloads worldwide. Yay!
In addition, there’s a new review up over on Amazon. Here’s how it starts:
A good story, and an excellent first novel.
This kept me interested until it was finally done.
For a first novel it was very good.
There were a couple of awkward sentences I had to re-read, but most books have that.
The plot was good, and different.
I am a bit amused that some people focus in on the “first novel” thing, and sometimes it seems that they feel like they can’t give a 5-star rating just on that basis. But perhaps they’re just trying to be nice in comments. If you have a chance, and haven’t yet done so, please consider posting your own review on Amazon (or elsewhere). Thanks!
There have been a couple of fairly scary pandemic stories in the news lately. One which has gotten a lot of attention is the Ebola outbreak, and how it has spread more than previous outbreaks. One which is even more frightening (to me) is word of an accidental anthrax exposure which went undetected for upwards of a week at a major supposedly secure research lab, the CDC bioterrorism facility in Atlanta. From one article:
Unfortunately, such scenarios are very real threats to not just lab workers but to the general population should a deadly contagion escape undetected the same way the CDC anthrax exposure remained undetected for possibly an entire week. That much time lapse for a deadly viral infection could prove devastating to the world population.
As it turns out, I am right at the point in St Cybi’s Well when first reports of the fireflu outbreak has hit the news. At first it is thought to be a Sarin gas attack at Hartsfield–Jackson International Airport in Atlanta. From the book:
“Jay, I’m here at the Georgia International Convention Center, just west of the airport. Authorities have turned this into something of a command center for the developing crisis, since they have put the entire airport terminal on lock-down.” She was reporting from a large, open room. In the background there was a stage and podium, where a small knot of government officials were standing and taking turns addressing the crowd of reporters and film crews down on the floor in front of them. “As you can imagine, the situation here is very confused at present, with conflicting reports coming from the airport itself about how many people have been injured in the attack, when it likely happened, how it was detected, and what steps are being taken to protect the public. What is certain is that while this airport – one of the busiest in the world – always has a number of arriving and departing flights, that the attack came sometime late at night has meant that the number of victims is much smaller than it could have been. We’re due to receive an update on the situation at 3:00 AM local time, which is in about an hour and fifteen minutes. Back to you.”
Serendipity. Scary, scary serendipity.
Edited to add this tasty tidbit of news which broke just in the last hour:
Scientists cleaning out an old laboratory on the National Institutes of Health campus in Bethesda, Md., last week came across a startling discovery: Vials labeled “variola” – in other words, smallpox.
* * *
In a statement Tuesday, the agency said scientists did indeed find smallpox DNA in the vials. Scientists are now testing the sample to see whether any of the is still capable of causing disease. That testing will take two weeks.
The laboratory on the NIH campus had been transferred to the Food and Drug Administration in 1972. It was being cleaned out as the FDA was preparing to move that lab to its main campus.
Filed under: Alzheimer's, Amazon, Connections, Depression, Feedback, Health, Hospice, Humor, Kindle, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, dementia, feedback, free, health, Heidegger, Her Final Year, hospice, jim downey, John Bourke, Kindle, reviews, Science Fiction
The caregiver puts up with that out of love and decency. This book describes these things in the form of daily and weekly accounts as well as diary log pages of personal fear and depression and exasperation and recurring bubbling senses of humor. I loved this because it made me cry and it made me laugh. It’s not all drudgery. It’s hysterically funny at times. But it wouldn’t be funny at all if you didn’t love the patient. This is a book of love…
So often people see the words “Alzheimer’s” or “dementia” or even “care-giving” and just move on, thinking that the book (and the experience) is nothing but darkness and depression. And yeah, there is darkness there, but to borrow a phrase from Communion of Dreams/Heidegger: “That which emerges from darkness gives definition to the light.”
We’re coming up on the three-year publishing anniversary (July 15). If you haven’t yet read Her Final Year go ahead and do so. If you want to wait a month, the Kindle edition will be available for free download around the anniversary.
And if you have read it, please consider posting your own review on Amazon or elsewhere. It helps.
Filed under: Alzheimer's, Amazon, Connections, Feedback, Health, Humor, Kindle, Marketing, Promotion, Publishing, Science Fiction, Society | Tags: Alzheimer's, Amazon, April Fools, blogging, care-giving, Communion of Dreams, direct publishing, feedback, free, health, hospice, humor, jim downey, John Bourke, Kindle, promotion, reviews, Science Fiction
From giving away copies of my novel and our care-giving memoir, that is.
Yup, in *spite* of the fact that today is April Fool’s Day, or perhaps precisely BECAUSE today is April Fool’s Day, both Communion of Dreams and Her Final Year are free to download all day today. No joke. Really!
Though I’d like to think that perhaps this new review posted on Amazon is a joke:
just OK, March 31, 2014Amazon Verified Purchase(What’s this?)This review is from: Communion of Dreams (Kindle Edition)usually my kind of story, but felt it took too long to get to the heart of the story. Never felt “connected” to the characters. OK for a free book
Ouch. Ah, well, that makes three ratings each for one, two, and three stars, out of a total of 73 ratings/reviews. Can’t make everyone happy.
But I can try, at least by making the books free to download. Today. And tomorrow. So go get yours!
Filed under: Amazon, Artificial Intelligence, Augmented Reality, Brave New World, Connections, Expert systems, Feedback, Google, NPR, Predictions, Science Fiction, tech, Wales | Tags: AI, Amazon, augmented reality, blogging, Communion of Dreams, Expert, feedback, jim downey, NPR, predictions, reviews, Science Fiction, Seth, St. Cybi's Well, St. Seiriol’s Well, technology, Wales, Well Hopper, writing
There are over 70 reviews of Communion of Dreams on Amazon, and if you poke around online you’ll find a bunch more. In addition, I’ve heard from countless friends and fans about the book in private messages and chats. And one of the most common things people will note is just how much they like the character of Seth, the Expert/AI executive assistant for the main character, Jon. The book opens with Seth contacting Jon about something which has come up, and you can get a sense of how useful such a virtual assistant could be:
“Sorry to bother you, Jon, but you’ll need to come back immediately. Business. I’ve made the arrangements. Transport waiting for you in town, take you to Denver. Then commercial flight home.” Audio only. That meant a lot. Tighter beam, easier to encode and keep private. Security protocol.
He wondered if something had gone wrong with the Hawking, the experimental long-range ship undergoing trials, based out at Titan. That was about the only thing he could think of that would require his cutting short his first vacation in four years. No use in asking. “All right. Give me a few minutes to pack my things, and I’ll get started.”
“And contact my family, let them know I’m on my way back. “
“Will do. Anything else?”
“Not at present. See you when I get there.”
Of course, CoD is set in 2052, and there have been huge advances in technology which allow for a very natural interaction between a human and a computer.
What’s been fun for me in writing St Cybi’s Well, set in our own time (well, actually, in October 2012), is that I get to plant the seeds for the technology which then shows up in Communion of Dreams. And one of those seeds is an Android app which is a ‘virtual assistant’ named Andi. It’s er, not quite up to Seth’s standards:
Darnell sat there, scanned the blog post. As he read, the assistant repeated “The page you requested is displayed on your screen. Do you need something else?”
“Um, yeah. How about a map to St. Seiriol’s Well?”
“A map is now displayed on your screen. You are presently at the location of St. Seiriol’s Well. Do you need something else?”
“I’m not at the Well. I’m in the parking lot. Where is the Well itself?”
“I’m sorry, available maps indicate you are presently at the Well. Do you need something else?”
“Go back to the Well Hopper site.”
“Very good. The page you requested is displayed on your screen. Do you need something else?”
A bit annoying, eh? Well, the people who have been reading the early chapters of the book have certainly thought so. Which was exactly what I was going for. Because technology doesn’t arrive fully developed. It shows up in an early, buggy form, and then gets improved over time. Think back to when we all had dial-up modems: they were annoying, klunky, and expensive … but they also were very, very cool because they allowed us to “get online”.
Anyway, I had to chuckle over a story on NPR yesterday afternoon which reminded me of this. Here’s the intro:
We’re already giving voice instructions to virtual personal assistants, like Apple’s Siri. But artificial intelligence is getting even smarter. The next wave of behavior-changing computing is a technology called anticipatory computing — systems that learn to predict what you need, even before you ask.
Google Now, which is available on tablets and mobile devices, is an early form of this. You can ask it a question like, “Where is the White House?” and get a spoken-word answer. Then, Google Now recognizes any follow-up questions, like “How far is it from here?” as a human would — the system realizes you’re still asking about the White House, even without you mentioning the search term again. It’s an example of how anticipatory computing is moving the way we interact with devices from tapping or typing to predictive voice control.
It wasn’t a prediction on my part to see this development, rather just paying attention to the current technology and tweaking it a bit to fit into the alternate timeline of CoD/SCW. But still, kinda fun to see things going just the way I envision.
Filed under: Amazon, Connections, Feedback, Science Fiction, Wales, Writing stuff, YouTube | Tags: Amazon, blogging, Communion of Dreams, jim downey, Pistyll Rhaeadr, reviews, Science Fiction, St. Cybi's Well, video, Wales, writing, www youtube
From near the beginning of Chapter 12 of Communion of Dreams:
“I found the reference that you asked me about regarding Mr. Sidwell and Wales.”
“Oh, really? That’s faster than I expected.”
“Well, as it turns out, there are quite a few scenic waterfalls in Wales, but only one that had an inn where someone lived during that time period. I’ve uploaded some images. Would you like to see them?”
The first image that filled his sight was of a great waterfall, cascading over the top of a cliff in the middle of a shallow ‘V’ between two higher hills. The stream was narrow, white with spray around the edges. Oaks and pines grew on the sides of the hills near the falls, and there was some kind of archway of rock about two thirds of the way down. Near the foot was an old iron pedestrian bridge crossing the stream.
Seth’s voice narrated. “It’s called Pistyll Rheadr, one of the ‘seven wonders of Wales’. The drop you see there is about 75 meters.”
The next image was closer to the falls, taken, Jon guessed, from the bridge. Now he could clearly see the wonderful natural stone archway, and realized that the initial drop of the falls ended in a pool just behind that, then the water spilled out under the arch for another significant drop into the main pool below. From this vantage, the spray and splash of the water glimmered in the sunlight, coating nearby rocks, feeding the ancient moss that grew there. A path was clearly visible to the right-hand side of the falls, leading up the side of the mountain.
“This next image is taken from the top of the falls. The red structure you see below the falls on the left-hand side is the inn. I have more images, if you wish to see them.”
As Seth spoke, Jon saw the wide, ‘U’ shaped valley open out before him, the falls tumbling down and away in the right foreground. The hills on either side of the valley were lightly wooded here and there, but mostly given over to pasture. On the left-hand side of the image, a narrow blacktop road wound down the valley, echoing the stream’s flow. And there, as Seth said, was the inn.
“No, thanks, Seth, I think that’s enough. Pretty place.”
“So I understand.”
“I don’t see anything particularly noteworthy about it. But it sure seemed to make an impression on Darnell.”
Guess what chapter I’ve just started writing in St. Cybi’s Well. ;)
All water is graceful, be it a tear or a torrent.
PS: new review up.
Filed under: Amazon, Art, Connections, Feedback, General Musings, Humor, Kindle, Marketing, movies, Promotion, Science Fiction, Star Wars, Writing stuff | Tags: Amazon, art, blogging, Bobba Fett, Communion of Dreams, direct publishing, feedback, humor, jim downey, Kindle, movies, promotion, reviews, Science Fiction, Sillof, St. Cybi's Well, Star Wars, The Princess Bride, writing
… said no one ever about Communion of Dreams. Oh, it’s got a buttload of positive reviews, but it’s a ‘serious’ book in the sense of being about Big Questions of Humanity’s Role in the Universe and all that . And, truth be told, so is St. Cybi’s Well (at least I hope so).
But as I’m starting to see the prospect of finishing SCW sometime in the next months, and perhaps because I’ve been in a bit of a funk lately, I’m kinda in the mood to write something which isn’t Oh So Serious. Something light, fun, perhaps even popular. (Gawds, what a concept.) Maybe something like The Princess Bride, but recast in feudal Japan. Or Star Wars redone as the Western it is at heart.
And speaking of which, guess what I found:
Bob A. Ford
The typical wild west bounty hunter who sells his services to bring in anyone with a price on their head. His quiet demeanor and lighting reflexes makes him one of the most dangerous men on the prairie.
There’s a whole series of these set in different periods/worlds, and they’re all completely delightful.
And we need more delight in our lives. All of us.
So, something to think about.
Oh, PS: thanks to one and all who downloaded CoD during the weekend promotion. Not huge numbers, but not bad: about 550 downloads around the world. Interestingly, the Amazon portal in Germany was the second-highest number of downloads (second to the US, of course), with a couple dozen. First time that’s happened, and that’s a bigger total for there than ever before to the best of my recollection. No idea why.
Filed under: Amazon, Art, Book Conservation, Connections, Failure, Feedback, Flu, Kindle, Marketing, Promotion, Publishing, Science Fiction, University of Missouri, Writing stuff | Tags: 1512, Adopt-a-book, Amazon, art, blogging, book conservation, bookbinding, Cicero, Communion of Dreams, direct publishing, free, jim downey, Kindle, Legacy Bookbindery, M.T.C. Epistolae familiares accuratius recognitae, MU, promotion, reviews, Science Fiction, writing
Most of the book conservation work I do is pretty nondescript, just workmanlike. After all, the intent isn’t to draw attention to my work, but to preserve as much of the original character and structure of the book as I can.
But now and again I get to do some ‘pretty’. And it’s nice to come across those again later, particularly when for whatever reason I’m feeling a little down. It’s a pleasant boost to my self esteem. Such it was yesterday when I was browsing through the Adopt-a-book program at MU’s Special Collections, and saw this entry:
Adopt-a-Book > Book Detail
Author: Cicero, Marcus Tullius. Published: Venetiis : Apud Aldum et Andream Socerum, 1512
Description: Take apart and resew, saving the label where possible. New leather binding
Condition / repair needed: This codex was printed by the legendary Aldine Press. It was printed during the life of Aldus Manutius, the founder of the press. The most famous dolphin and anchor printer’s mark is seen on the title page.
Thank You to Donor:J. Schweitzer, R. Drake and M. Correale
I’ll explain later why it was that I was browsing the site (it was a good reason, but I don’t want to get into it just yet).
As for why I was feeling down … No special reason, as I mentioned yesterday. Getting over the touch of the flu I had early in the week. A touch of the winter blahs. The mild feeling that I get in the middle of any project that I have bitten off more than I can chew and that I’m going to fail spectacularly.
So it’s nice to see tangible evidence that I actually can do something well.