There are other things for me to address today. Science news. My birthday. A promotion in progress.
But more important than all of that, to me at least, is what is behind this day. As usual, I woke in time to hear this on my local NPR station: Stated: The Declaration Of Independence
And, as usual, I took the time to listen to the reading, to think about what it actually says and what lead to. And I am humbled in my assessment of myself.
Happy Birthday.
Jim Downey
Filed under: Connections, Flu, Government, Health, NPR, Pandemic, Predictions, Science, Science Fiction, Society, Survival, tech, Writing stuff | Tags: avian flu, flu, H5N1, health, influenza, jim downey, NPR, pandemic, predictions, science, Science Fiction, technology
From the first page of Chapter 17:
“Sorry.” She looked over at him, the dread in her eye replaced by something else. “The 1918 flu was recreated in the early part of this century, as there was a growing concern about Avian flu. The scientists at the time discovered that the prevailing form of Avian Flu, the H5N1 virus, was surprisingly related to the 1918 pandemic virus. Almost identical RNA structure, similar DNA.”
“But you say this one is different.”
“Yeah. Ignis was such a nasty bug because it spread by aerosol, but it also had a very short incubation period, just a couple of days. Then the disease itself was very swift, and victims died within hours of onset. Like it was all time- compressed, hyper-virulent. This is one of the reasons that people thought then, and still debate now, whether it was a weaponized version of Avian flu.”
From yesterday’s All Things Considered:
Anyone and everyone can now look in the journal Science and read about how to make lab-altered bird flu viruses that have been at the center of a controversy that’s raged for months.
But in the eyes of some critics, the details of these experiments are effectively the recipe for a dangerous flu pandemic.
The H5N1 bird flu virus isn’t normally contagious between people, but these mutants most likely are. They were created with the best of intentions by a lab that’s trying to understand how flu viruses might change in the wild and start spreading in humans.
But as word of the experiments got out, scary headlines warned of a “doomsday” virus and a “super-flu.” Scientists, public health officials and security experts debated what to do in closed-door meetings, as others made their arguments in op-eds and at public meetings.
Remember when the “fire-flu” (Latin name: Ignis) was supposed to happen?
Yeah, 2012.
Draw your own conclusions.
Jim Downey
Filed under: Alzheimer's, Amazon, Bipolar, Connections, Diane Rehm, Failure, Feedback, Health, Hospice, Humor, Kindle, Marketing, Music, NPR, Promotion, Publishing, Science, Science Fiction, Writing stuff | Tags: Alzheimer's, Amazon, blogging, care-giving, Diane Rehm, direct publishing, free, health, hospice, humor, jim downey, John Bourke, literature, memoir, music, NPR, science, Science Fiction, Scott O'Neill, Shawn Colvin, writing
“Now, you would normally expect to pay $16.95 for a book of this size and quality! Just look at it! 420 pages full of the touching story of caring for a loved one! And those aren’t little trade paperback pages, either, but memoir-sized pages, each one charged with honest emotion and providing insight into one of the most challenging — and rewarding — experiences in life!”
“That’s right – you would expect to pay $16.95 for such a book – and it would be a fair deal. A modest price in exchange for access to the innermost thoughts and feelings of four people, each on a personal journey of love and self-discovery.”
“But you don’t have to pay $16.95. No you don’t. Why you can get the whole book — containing every single word, every single lesson learned — in Kindle format for the low, low price of JUST $8.99. That’s right — a huge savings, including no shipping or handling fees!”
“But Wait! There’s More!”
* * * * * * *
Shawn Colvin has a new book out, and has been doing the promotional circuit. I had the pleasure of hearing most of an hour-long interview with her this morning on the Diane Rehm show.
Colvin is just a couple of years older than I am. I can’t say that I have been a huge fan of hers, but I have been aware of her for a long time, and have always appreciated her talents. And Diane Rehm is one of the best in the business. As noted, I’d love to have a chance to have her interview me. The interview was engaging, and touching.
Because Colvin’s book is a memoir. No, not of care-giving. Not care-giving for someone else, anyway. Rather, it was about her own path to deal with her own demons. Depression. Substance abuse. Bad relationships. Anorexia. Toss in the usual professional stresses and failures, and it makes for a compelling story.
* * * * * * *
“That’s right, friend, there’s more: a *LOT* more.”
“Because not only can you get Her Final Year for the low, low price of just $8.99, but you can ALSO get this incredible companion volume: Communion of Dreams! That’s right — James Downey, one of the co-authors of Her Final Year, has also written a novel. And not just any novel — a work of speculative fiction which has fired the imagination of thousands, and prompted dozens of 5-star reviews on Amazon!”
“For such a work you would expect to pay at least $11.95 for the 350 page paperback! But it is available in the Kindle edition for just $4.95. That’s fight, LESS THAN one thin five-dollar bill. Such A Deal!!”
“But Wait! There’s More!”
* * * * * * *
Fascinating story this morning about efforts to stop the spread of Dengue Fever on NPR. The basic idea was to use a known effect where mosquitoes infected with a naturally-occurring bacteria are unable to transmit the virus which causes Dengue Fever. The science in the story was good, but what really caught my attention was how the effort to get this idea to work had been a *very* long and frustrating quest for the scientist behind it.
See, Scott O’Neill had been working on this project for some 20 years. The biggest problem was technical — it is phenomenally difficult to infect living mosquitoes with the bacteria. It takes thousands and thousands of attempts, working at a microscopic level, to inject the necessary bacteria into a mosquito egg, and then having said egg develop to adulthood and actually *have* the disease. Failure is a constant companion.
And so this is what caught my ear when I heard it:
Take the day in 2006, when one of Scott’s graduate students told him he thought he’d finally succeed in infecting a dengue mosquito with Wolbachia.
I figured this must have been a red-letter day for Scott, a day of sheer elation. Scott told me looking back on it, it was. But at the time it didn’t seem that way.
“Because you’re so used to failure that you don’t believe anything when you see it,” he says. “And so you can think back to when there was a Eureka moment, but at the time, you’re probably, ‘this looks good but I’ve been burnt thousands of times before. Let’s go and do it again, and the do it another time, and check and check and make sure it’s actually real.’ “
* * * * * * *
“That’s right, friend, there’s more: a *LOT* more.”
“Because while you would think that just $8.99 for Her Final Year or only $4.95 for Communion of Dreams would be a STEAL — and you would be correct to think that! — you can get *BOTH* of these books for FREE this Saturday!”
“That’s right, I said FREE, friend. As in beer! The Kindle edition of each book will be completely and totally FREE all day Saturday! All you have to do is just go and download it. Why, you do not even need to own a Kindle in order to take advantage of this phenomenal offer! That’s right, you can get a FREE Kindle app for almost every computer, tablet, or mobile device known to man!”
“But Wait! There’s More!”
* * * * * * *
I sometimes wonder whether I shouldn’t play up my own “demons” more.
Now, I haven’t been shy about talking about them. Anyone who has read my stuff for any length of time knows this. I’m honest about my background (orphaned at 13), my failures (both recent and older ones), and my own struggles with mild bipolar disorder and health problems. Talking about these aspects of my life helps to provide some context for the things I think and do — it is all part of who I am and why I see the world as I do.
But I try not to dwell on such things. I have never considered myself a tragic figure or particularly burdened. Whether or not it was Plato who actually said “be kind, everyone you meet is fighting a hard battle” that aphorism is still very true, and my own battle hasn’t been especially more difficult than the one many people fight. In very many ways I have been extremely fortunate, and I know that. And I’m thankful for it.
But still, there is no denying that tragedy sells.
* * * * * * *
“More? How can there be More? The Kindle edition of both books are already FREE — what more could any reasonable person ask for???”
“Well, I’ll tell you what. How about a *signed* copy of the paperback edition of each book? For FREE!”
“That’s right. FREE!”
“All you gotta do is post a comment here. Or on our Facebook page. Or send a Tweet. Do any of these things between now and Sunday morning, and your name will be entered into a drawing for a FREE signed copy of the paperback! You can enter once for each book at each venue — a possibility of 6 chances in total! What more could you possible ask for?”
“So, don’t delay — enter your name, today! And remember to download your FREE copy of the Kindle edition of Her Final Year and Communion of Dreams this coming Saturday!”
Jim Downey
(Cross posted to the Her Final Year blog.)
Filed under: Artificial Intelligence, Brave New World, Civil Rights, Constitution, Government, NPR, Politics, Predictions, Privacy, Science Fiction, Society, tech, Terrorism
That’s the sound of your privacy melting:
U.S. To Keep Data On Americans With No Terror Ties
The U.S. intelligence community will now be able to store information about Americans with no ties to terrorism for up to five years under new Obama administration guidelines.
Until now, the National Counterterrorism Center had to immediately destroy information about Americans that was already stored in other government databases when there were no clear ties to terrorism.
Giving the NCTC expanded record-retention authority had been called for by members of Congress who said the intelligence community did not connect strands of intelligence held by multiple agencies leading up to the failed bombing attempt on a Detroit-bound airliner on Christmas 2009.
Remember, it’s all about data mining. And the government is getting ready to mine *all* your data. Regardless of whether or not you have any ties to terrorism. And that new 5-year limit? I’m sure even that modest limitation will just melt away.
Jim Downey
Heard a particularly interesting interview on NPR yesterday, as I was quietly working away in the bindery. Here’s a bit from their website about it:
In the 1940s and ’50s the message to most Americans was: Don’t be shy. And in today’s era of reality television, Twitter and widespread self-promotion, it seems that cultural mandate is in overdrive.
Boy, howdy.
Yeah, it’s about introverts, and how our culture today considers extrovertism not only the default, but that there is almost something *wrong* with you if you’re not an extrovert. As I noted yesterday, just doing the online promotion of Communion of Dreams over the weekend was psychologically exhausting for me.
Because yeah, I’m an introvert. In taking the little quiz that NPR has up, all but two of my answers clearly point to my introvert tendencies. (Any guess which two I answered the other way?*) Which makes it all that much more difficult for me to step into the limelight and demand attention from the world – even though this is exactly what is needed to be a successful author in this day and age.
Which is part of the reason why I ask people for their help. For each and every person who tells a friend about the novel (or the care-giving memoir), or who posts a review somewhere, that’s one small straw I don’t have to carry, and makes life much more enjoyable. If you’re not an introvert, this may not make a lot of sense – but believe me, it matters a great deal, and is part of the reason why I am so appreciative of any such help.
And now I need to go get some writing done. Some nice, quiet, introspective, introverted writing.
Jim Downey
*7, 20.
Filed under: Kindle, Marketing, NPR, Predictions, Publishing, Science Fiction, Writing stuff
I mentioned a month ago that I was going to be moving to self-publish Communion of Dreams. I just wanted to note that we’re actually moving to accomplish that goal – I need to do a close read-through of the prepped text for the hardcopy version, and when that is done then my Good Lady Wife will work to create a html version for the Kindle edition. When that is done, then we’ll ‘launch’ the book officially – perhaps even yet this month. We’ll see how everything comes together, and whether the 35,000+ downloads of the pdf version of the book is an indication that people will actually buy a copy of the book or not.
If not? Perhaps I’ll take up writing ‘paranormal romance’…
Jim Downey
Filed under: Alzheimer's, Art, General Musings, NPR, Society, Survival, Writing stuff
Saturday afternoon they announced a new “Three Minute Fiction” contest on NPR. Here’s a bit about the theme this time around:
Round 7 Rules
Your story must have somebody arriving in town and somebody leaving town.
Your story must be 600 words or fewer. One entry per person. your deadline is 11:59 p.m. ET on Sunday, Sept. 25.
* * * * * * *
Had a nice bump up in downloads of Communion of Dreams so far this month. About 270 copies already. I’ve really stopped keeping track, but that puts it somewhere about 32,000 downloads so far.
Which has gotten me thinking. After going through and preparing the manuscript to self-publish Her Final Year, I know what is involved in that. It’d be simplicity itself to set things up to self-publish CoD. Given that I haven’t heard squat from Trapdoor books about publishing the book since the start of the year, I’ve given up on that possibility.
Then again, I am very disappointed in the sales of Her Final Year, since we’ve only sold about 10% of what we needed to sell in order to just break even on the costs of setting that up. I mean, we’re talking only a couple of dozen books so far. Damned depressing, especially given how much everyone has said that there is a huge need for the book and how good it is.
So, is it worth it? Would you actually buy a copy of Communion of Dreams?
And can I actually trust that?
* * * * * * *
There was an interesting item on Morning Edition this morning, about a relatively new kind of psychotherapy in use with people facing the end of life. It’s called Dignity Therapy. Here’s an excerpt from the story:
The something that Chochenoff decided to create was a formal written narrative of the patient’s life — a document that could be passed on to whomever they chose. The patients would be asked a series of questions about their life history and the parts they remember most or think are most important. Their answers would be transcribed and presented to them for editing until, after going back and forth with the therapist, a polished document resulted that could be passed on to the people that they loved.
Chochenoff named this process dignity therapy, and for the last 10 years he has used it with the dying. And one of the things that has struck him about the processes is this: The stories we tell about ourselves at the end of our lives are often very different than the stories that we tell about ourselves at other points.
“When you are standing at death’s door and you have a chance to say something to someone, I absolutely think that that proximity to death is going to influence the words that come out of your mouth,” Chochenoff says.
* * * * * * *
I by-and-large hid from all the 9/11 memorials over the weekend.
I have plenty of experience in dealing with traumatic loss. For me, remembering a loved one who has died is important, but so is moving on with life. And I can’t do that by constantly poking at the empty place left in my heart.
I know that I am different from most people in this way. Or at least I assume that I am, based on what I see. And I’m not just talking about the 9/11 memorials all weekend.
Recently, I was contacted by a gentleman who was doing some research for an ‘online memorial’ site. He wanted some details on my father’s death, along with specifics as to his burial location and my mom’s. He was polite about it, but somewhat surprisingly insistent almost to the point of annoyance.
I found this odd, and did a little checking. Turns out this fellow is part of something I call “competitive memorializing” – there’s a whole online community of these folks, who just like trying to see how many such memorials that they can create. Not for loved ones, or people they knew, either. Just total strangers who they for whatever reason decide they should “memorialize.” Who knew?
And here’s a small confession: I didn’t have most of the information this fellow was wanting. It’s just not important to me to remember my dad that way. His body was just a shell – it was what his life was that matters.
* * * * * * *
Saturday afternoon they announced a new “Three Minute Fiction” contest on NPR. Here’s a bit about the theme this time around:
Round 7 Rules
Your story must have somebody arriving in town and somebody leaving town.
Your story must be 600 words or fewer. One entry per person. your deadline is 11:59 p.m. ET on Sunday, Sept. 25.
I have some thoughts on this, tied to the ideas of memory and memorials and the things I have said above.
Because the stories we tell are important.
Jim Downey
(Cross posted to the HFY blog.)
To play off the NPR series a bit…
I just found out that A Canticle for Liebowitz is available for download. No, not the book – the wonderful NPR radio play adaptation from 1981.
I heard this when it was first broadcast, and then caught a bit of it a few years later when it was re-broadcast. But then it disappeared, and wasn’t available through anywhere but bootleg copiers.
If you haven’t already, you must hear this.
Jim Downey
Ah, this is truly delightful:
Full information and background from Robert Krulwich.
Jim Downey
The National Institute on Aging has come up with new research guidelines and two new clinical diagnosis relating to Alzheimer’s. From the NIA news release:
For the first time in 27 years, clinical diagnostic criteria for Alzheimer’s disease dementia have been revised, and research guidelines for earlier stages of the disease have been characterized to reflect a deeper understanding of the disorder. The National Institute on Aging/Alzheimer’s Association Diagnostic Guidelines for Alzheimer’s Disease outline some new approaches for clinicians and provide scientists with more advanced guidelines for moving forward with research on diagnosis and treatments. They mark a major change in how experts think about and study Alzheimer’s disease. Development of the new guidelines was led by the National Institutes of Health and the Alzheimer’s Association.
From NPR coverage of the news:
The new definitions, which were just published online by the journal Alzheimer’s & Dementia, acknowledge this dimly understood early phase of Alzheimer’s. Now there are two new pre-dementia phases: mild cognitive impairment and “preclinical Alzheimer’s.”
In mild cognitive impairment, a person’s changes in thinking are noticeable to himself, friends, or family. They would show up on tests of memory and recall, but don’t interfere with everyday activities. Alzheimer’s is just one possible cause. Because there are no treatments to prevent or stop Alzheimer’s, many people may not consider this diagnosis a blessing.
The second new phase, preclinical Alzheimer’s, is much squishier. There’s no list of symptoms that a doctor can whip out to say you’ve got it. Rather, the goal in creating this category is to see if scientists can define when the disease starts, and track it through biomarker tests, brain imaging, or other yet-to-be-invented tests. If that happens, it might someday lead to ways to prevent Alzheimer’s. But for now this category is useful only to researchers.
As I noted four years ago, I have faced the question of whether to be tested for a disease I may have, but for which there is very little in terms of treatment options (and no cure). From that blog post:
It is a very difficult decision to be tested for a genetic disease which you may have, and for which there is no known treatment (let alone a cure). If you test positive, you know exactly the sort of future you face. And, if you test positive, it can have a significant impact on your employment and insurance possibilities, even decades before you might experience any onset of symptoms.
There is a similar disease which runs in my family called Machado-Joseph. In terms of statistics, there is about a 68% chance that I carry the gene for it, though I do not have the other familial characteristics which seem to track with the disease. So I have elected not to be tested. Besides, at nearly 50 years of age, if I did have the onset of the disease, it would be likely that it would progress so slowly that I would die of something else (the younger the age of onset, the more rapidly the disease progresses).
That said, I have told my sister (who has the disease) that if her doctor wants to do the genetic test on me in order to have that additional bit of information, I would do so.
And I suppose that is where I come down on the issue of whether or not to do any of the new testing for Alzheimer’s: if it will help science better understand this disease, how it develops, and to chart possible treatments, I would participate. It may not be something I could benefit from myself, but I have to look at the bigger picture. I think we all do.
Jim Downey
Communion Of Dreams 