Filed under: Amazon, Art, Bipolar, Book Conservation, Connections, Depression, Emergency, Failure, Feedback, Flu, Health, Kindle, NPR, Pandemic, Predictions, Preparedness, Publishing, Science, Science Fiction, Writing stuff | Tags: art, blogging, book conservation, bookbinding, Communion of Dreams, COPD, direct publishing, Ebola, feedback, Guinea, health, jim downey, Kindle, Liberia, Nigeria, NPR, predictions, reviews, science, Science Fiction, Sierra Leone, St. Cybi's Well, WHO, writing
For one reason and another, this past week has been a little rough, hence the paucity of posts. The rejection from the agent kinda took the wind out of my sails a bit, since I thought that the prospects were good. And continued news on the Ebola front* kept reminding me just how grim St Cybi’s Well is getting, in regards to the onset of the fire-flu (though I hope that other aspects of the novel more than balance that out for the reader).
But now the winds have shifted again, and things are looking up. We’ve gotten a bunch of bids in the auction to help my friend (though you can still pick up a hand-bound limited edition hardcopy of Communion of Dreams for a song). There’s a new review of CoD up on Amazon. And this morning I got word that a major new project I’ve been involved with helping to get organized is going to be implemented — more on that when there’s an official announcement in a couple of weeks. But it’s kinda a big deal and one which I am excited to be part of. Oh, and there’s a fun little item here about a recent book conservation job I did which might be of interest.
So, those are the latest developments. Watch for more to come. Oh, and go put a bid in on something on the auction site — there are a number of great items available! Thanks!
*I do want to note that I don’t think that Ebola poses a significant risk to people in the US. We have the medical infrastructure to deal with isolated cases, which is likely all that we’ll see here. There’s no reason to get into a panic. But that doesn’t change the horror of the disease itself, nor the impact that it is having on people in Guinea, Liberia, Nigeria, and Sierra Leone.
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, 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, Art, Blade Runner, Connections, Depression, Failure, Flu, General Musings, Health, Philip K. Dick, Ridley Scott, Science, Science Fiction, Scientific American, Society, Writing stuff, YouTube | Tags: Alzheimer's, art, bipolar, Blade Runner, blogging, care-giving, Communion of Dreams, direct publishing, health, Her Final Year, hospice, jim downey, John Bourke, Kickstarter, memoir, memory, New York Review of Books, Oliver Sacks, parainfluenza, Philip K. Dick, reality, science, Science Fiction, St. Cybi's Well, video, writing, www youtube
Of late, as I have been slowly getting over the rather nasty bout of parainfluenza I mentioned previously, shedding the more annoying and disgusting symptoms, I’ve also come to realize that just now I am pulling out of the depressive trough of one of my long-term bipolar cycles. It wasn’t a particularly bad trough, and was somewhat mitigated by the success of the Kickstarter back in the fall. Nonetheless, it was there, as I can see in hindsight.
I am frequently struck just how much of our life doesn’t make sense until seen from a distance. Just recently I was surprised at the revelation of *why* the failure of Her Final Year to be more successful bothered me as much as it did: it was because I had seen the book as being a way to create something positive (for the world) out of the experience of being a long-term care provider. To have the book only reach a limited audience was, in my mind, saying that our roles as care-givers didn’t matter.
Which isn’t true, of course, but that was the emotional reality which I had been dealing with. The “narrative truth”, if you will. A term I borrow from a very interesting meditation by Oliver Sacks at the New York Review of Books website titled Speak, Memory. From the article:
There is, it seems, no mechanism in the mind or the brain for ensuring the truth, or at least the veridical character, of our recollections. We have no direct access to historical truth, and what we feel or assert to be true (as Helen Keller was in a very good position to note) depends as much on our imagination as our senses. There is no way by which the events of the world can be directly transmitted or recorded in our brains; they are experienced and constructed in a highly subjective way, which is different in every individual to begin with, and differently reinterpreted or reexperienced whenever they are recollected. (The neuroscientist Gerald M. Edelman often speaks of perceiving as “creating,” and remembering as “recreating” or “recategorizing.”) Frequently, our only truth is narrative truth, the stories we tell each other, and ourselves—the stories we continually recategorize and refine. Such subjectivity is built into the very nature of memory, and follows from its basis and mechanisms in the human brain. The wonder is that aberrations of a gross sort are relatively rare, and that, for the most part, our memories are relatively solid and reliable.
Let me repeat one bit of that: “Frequently, our only truth is narrative truth, the stories we tell each other, and ourselves.”
I think this is at the very heart of why fiction has such power, and appeal. I also think that it explains the well-documented phenomenon of people believing things which are clearly and demonstratively false, if their facts come from a trusted source.
Little surprise that writers of fiction are aware of this very human trait, and have explored it in all manner of ways. I have a note here on my desk, a scrawl written on a scrap of paper some months ago as I was thinking through character motivations in St. Cybi’s Well, which says simply: “We take our truths from the people we trust.”
And here’s another example, from one of my favorite movies, exploring a favorite theme of Philip K. Dick’s:
That theme? The nature of reality. And this is how the Sacks essay closes:
Indifference to source allows us to assimilate what we read, what we are told, what others say and think and write and paint, as intensely and richly as if they were primary experiences. It allows us to see and hear with other eyes and ears, to enter into other minds, to assimilate the art and science and religion of the whole culture, to enter into and contribute to the common mind, the general commonwealth of knowledge. This sort of sharing and participation, this communion, would not be possible if all our knowledge, our memories, were tagged and identified, seen as private, exclusively ours. Memory is dialogic and arises not only from direct experience but from the intercourse of many minds.
In other words, that reality is a shared construct. A Communion of Dreams, if you will.
Time for me to get back to work.
Filed under: Alzheimer's, Amazon, Book Conservation, Depression, Health, Kindle, Marketing, Music, New Zealand, Promotion, Publishing, Writing stuff | Tags: Amazon, depression, direct publishing, jim downey, Kindle, money, music, taxes, travel, writing
This is . . . difficult.
Difficult because it is hard to see myself this way. Difficult because it is largely taboo in our culture. Difficult because I’m still struggling with it. Difficult because reality sometimes comes as a shock.
Last year was a hard year for me, as I said earlier:
Because 2011, while it had some good things about it, was mostly just painful. Literally. In many regards, I’d just as soon forget the bulk of it.
But I hadn’t quite realized just how hard it was until confronted with some numbers yesterday. Those numbers were on our tax returns, collected from the accountant.
Yeah, like I said, taboo. You’re not supposed to talk about income in our culture, at least within certain limits. I won’t stray too far over the line, but I will say that there was a reason that I was feeling frustrated and angry last year about the response to my writing efforts. That reason amounted to having an income so low that after deductions, we owed *no* taxes to either the state or federal government in the final analysis. Well, we had to pay the ‘self-employment’ tax, but that’s it.
Do you know how little you have to make in order to not pay any income tax? Well, trust me, if you don’t, you don’t want to, at least not by direct experience.
It was due to a combination of things. The recession had squeezed my book conservation business all along, limiting the money people had for something so discretionary, but last year was the worst. And the pain from my intercostal tear was very limiting until very recently. And I sunk way too much time and energy into getting Her Final Year ready for publication and then trying to promote it. Yes, I accept my own culpability for this, and I am not trying to blame or shame anyone else.
Which is why it is difficult to talk about. But facing the hard, cold reality helps me to understand some things. About my self. About my motivations and behavior over the last year or so.
Obviously, I got through the last year OK, thanks to a variety of resources I had. Hell, I was able to travel to New Zealand (a commitment made when things were more flush). And I’m happy to say that so far this year things are looking up. My book conservation work has picked up. My intercostal tear is *slowly* getting better.
Thanks to all who have helped to change the dynamic. Seriously, just knowing that people find the books worthwhile – that they are willing to tell others about them, write reviews, et cetera, makes a huge difference. I very much appreciate it.
Filed under: Alzheimer's, Depression, Health, Hospice, Kindle, Marketing, movies, Promotion, Publishing, Society
One thing I realized some time back was that many people just don’t want to think about care-giving. That’s understandable, because there’s a *lot* about care-giving which is stressful, unpleasant, depressing.
But that isn’t all there is. I have said to others that this experience of being a care-provider was the hardest thing I have ever done, but that it also made me a much better person. Why? Well, because of moments like this, from the ‘November: Endgame’ chapter of the book, originally written in November 2007:
After a particularly rough patch of it yesterday morning, I was helping her [Martha Sr] from the toilet to her usual seat in the front room, where she likes to sit and look at magazines. As we transitioned from the wheelchair to her comfy chair, and I got her settled safely there, she looked up at me, her frail thin arms still around my neck, her light brown eyes clear for a moment, and said “thank you, son.”
In the more than twenty years I’ve known her, in the twenty years I have been married to her daughter, she has never once before called me “son.” In fact, since my own parents died almost 40 years ago, no one has called me that. It was a strange word to hear directed my way. And it touched me like no other thanks she has ever offered.
So, don’t be afraid. If you haven’t read the book, go download a copy for free now. And tell your friends and family members about it. This is something which may not be useful right now, but the chances are that it will be relevant at some point in your life. And knowing that you can face that with a measure of joy can make all the difference.
*Yes, from this.
Filed under: Alzheimer's, Bipolar, Depression, Health, Hospice, Marketing, Promotion, Publishing, Writing stuff
Cross posted from the Her Final Year blog. For those who are new to my blog, much of the material in the memoir was stuff I wrote here, first, as we were going through the experience of being care-providers for my Mother-in-law. It is *intensely* honest and personal, but that gives it power – showing others what it is like to be a care-giver through the good times and the bad. Many people have found it to be very helpful.
Well, last Sunday’s free Kindle edition promotion was very successful – we had over 400 downloads, from the US, the UK, and even Italy! If you were one of the people who downloaded the book, we hope you are finding it useful in understanding how we went through the arc of being care providers.
The response was so good that we’re going to do it again this coming Sunday. Yup, anyone will be able to download the Kindle edition of Her Final Year for free. You don’t need a special code. You don’t need to enter any kind of drawing. You don’t even need a Kindle – there is a free Kindle emulator/app for almost all computers/tablets/mobile devices. Just go to the Kindle page for the book, and “buy” it for $0.00.
Please help spread the word – tell friends and family members. Post the info to your Twitter or Facebook accounts. Share it with forums for care-givers. We want to get this book widely disseminated so that it can do more good.
Thank you – it has been very rewarding to hear back from those who have found the book valuable either as care-providers or for understanding what care-providers they know are going through.