Filed under: Alzheimer's, Argentina, Ballistics, Bipolar, Book Conservation, Connections, Depression, Failure, Gardening, General Musings, Guns, Health, Italy, New Zealand, Patagonia, Science Fiction, Society, Survival, Travel, Wales, Writing stuff | Tags: Alwyn, Alzheimer's, Argentina, bipolar, blogging, book conservation, bookbinding, care-giving, Communion of Dreams, depression, direct publishing, feedback, gardening, guns, Habaneros, health, Her Final Year, hospice, Italy, jim downey, John Bourke, Legacy Bookbindery, literature, New Zealand, Patagonia, Science Fiction, St. Cybi's Well, travel, Wales, writing
This will probably come across as a little brag-y. Sorry about that. Not my intention.
The other day I got a phone call. For Legacy Art. The gallery we closed May 31, 2004. Yeah, more than ten years ago.
And after I got through abusing the telemarketer over this point, I got to thinking about the many changes in the last decade.
First thing I should say up front: I’m at a low point in my bipolar cycle, as I’ve noted recently. That means that my self-image isn’t all that great. This isn’t a debilitating depressive episode or anything — I’ve managed to continue to work steadily, as well as enjoy the usual aspects of life. So not horrid. But it is sometimes difficult to not focus on the things which haven’t gone well, and my own failings which are often a component of that. And one of those failings is a sense of not accomplishing much, of being lazy, of wasting my time and the time of others.
Anyway. I got to thinking about the changes in the last decade. And surprisingly, more positive things came to mind than negative ones. That fed on itself, and I found myself making a mental list of the accomplishments.
In no particular order or ranking: wrote two books (one of them as co-author). Most of the way done with another. Visited Wales. And Argentina. And New Zealand. And Italy. Wrote several thousand blog posts. Became something of an authority on small caliber ballistics. Wrote several hundred articles and columns for publication. Was the full-time caregiver for someone with Alzheimer’s. Have done conservation work on something more than a thousand (that’s just a guess … may be closer to two thousand) books and documents. Made some great hot sauces. Raised, loved, and then said farewell to a great dog. Tried to be a good friend, and husband. Tried to help others when I could.
We all fail. We all have things we’ve done that haunt us in one way or another. Sometimes, those fears and demons overwhelm. Me, at least.
I may or may not be at a turning point in my bipolar cycle. But I’m glad that at least I can think of things I have accomplished. That helps.
Back to work on St. Cybi’s Well.
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: Amazon, Connections, Feedback, Fireworks, Government, Humor, Kindle, Marketing, Promotion, Science Fiction | Tags: America, blogging, Communion of Dreams, direct publishing, feedback, Fourth of July, free, humor, Independence Day, jim downey, July 4th, Kindle, promotion, Science Fiction
I bought you a book:
Digital List Price: $3.01 What’s this? Print List Price: $11.95 Kindle Price: $0.00 You Save: $11.95 (100%)
See? It’s free! Today through Sunday! Go get a copy! Tell your friends to go get a copy! Tell your dog to go get a copy! But not your cat. Cats prefer to read the wallpaper. You know how they are.
Seriously, Happy Fourth to one and all.
Filed under: Bipolar, Connections, Feedback, General Musings, Writing stuff, YouTube | Tags: blogging, Call Me Ishmael, Communion of Dreams, feedback, Her Final Year, jim downey, literature, St. Cybi's Well, video, writing, www youtube
Interesting site/idea, though it would be a tough call to pick a book …
I’d be almost nervous to hear what someone might say about one of my books. But in spite of making solid progress with the writing of St Cybi’s Well, I seem to be at low ebb in terms of my self-confidence/bipolar cycle, so it might just be due to that.
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, Artificial Intelligence, Brave New World, Connections, Feedback, Genetic Testing, Health, Hospice, Humor, Kindle, Marketing, movies, Promotion, Publishing, Science, Science Fiction, tech, Writing stuff, YouTube | Tags: Aliens, Alzheimer's, Amazon, artificial intelligence, blogging, direct publishing, DNA, feedback, free, health, Her Final Year, hospice, humor, jim downey, John Bourke, Kindle, movies, promotion, science, Science Fiction, Scrivener, St. Cybi's Well, synthetic biology, technology, writing, www youtube
Catch this news this week?
Synthetic biology: New letters for life’s alphabet
The five bases found in nucleic acids define the ‘alphabet’ used to encode life on Earth. The construction of an organism that stably propagates an unnatural DNA base pair redefines this fundamental feature of life.
* * *
Sorry about the sparseness of posting lately. I’ve been … busy. Have had a couple of interesting things happen which could play out in some very good ways. One is still enough in an embryonic stage that I won’t mention anything about it yet, but the other is far enough along that I’ll share: there’s a literary agent who is potentially interested in representing me, something which I have been thinking about for a while.
And it seems like a good enough fit that I took all of last weekend to put together a submission package for formal consideration. That meant going through and doing fairly thorough revisions to the first few chapters of St Cybi’s Well, using the feedback I have gotten from half a dozen ‘beta readers’, as well as composing a formal synopsis of the book. Frankly, both were a lot of work, and somewhat skewed my normal work schedule such that it is just now getting back to what passes for normal in my life.
But it was also helpful, and forced me to clarify some things which I had left unfocused for the rest of the book. Because of the way I am writing this (using Scrivener), it has been fairly easy for me to block out both the overall arc of the book as well as character developments. But doing so has been based on chapter notes more than anything, meaning that it was still somewhat in flux. Creating a full synopsis meant that I had to put the whole thing into one coherent document. And even though it was something of a pain in the butt, the result is helpful.
I’ll keep you posted as to any concrete developments.
* * *
Remember this scene from Aliens?
Considered a classic, and rightly so. But I’ve always thought that a big part of the brilliance of it is how it sets up what happens immediately after:
Back at the groups’ table, Bishop holds up his hand and examines a tiny cut closely.
BURKE: I thought you never missed, Bishop?
To Ripley’s horror, a trickle of white synthetic blood runs down his finger. Ripley spins on Burke, her tone accusing.
RIPLEY: You never said anything about an android being on board! Why not?!
BURKE: It never occurred to me. It’s common practice. We always have a synthetic on board.
BISHOP: I prefer the term ‘artificial person’ myself.
* * *
Oh, one more thing: in observation of Mother’s Day, the Kindle edition of Her Final Year is available for free download through Sunday, May 11th. If you’re new here, just a quick note: this is our care-giving memoir about the challenges and rewards of caring for someone with dementia, as well as the long recovery/reflection period which comes after. It seems to have helped a lot of people. Perhaps it can help you or someone you know.
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.