Filed under: Ballistics, Health, Promotion, Science Fiction, Writing stuff
Odd little thing I just noticed…
OK, let me back up a bit. As mentioned earlier, I’m fighting an annoying and rather stubborn lung infection. I was doing better the first of this week, after a course of antibiotics, but in the last couple of days have started another downward dip. Just got another round of antibiotics from the doc, with instructions to take it easy and see him Monday if I am not feeling better. Because of all this I am feeling a bit pathetic and non-creative, but I am not feeling quite like I just want to nap – I’m hovering over a no-man’s-land between sickness and health, unmotivated to do much. So I read through the stuff that needs work on the care giving book, but am not up to actually doing anything about it.
Anyway. Because of being stuck in this state, the most I feel like doing is poking around a bit. Which I started to do with the stats for Communion of Dreams. Usually, I just check to see how many downloads have occurred and leave it at that. Those are the numbers that I report on here. But a bit ago I decided to see just how many hits the site has been getting.
And this is what I found curious. It’s now running about 10,000 hits a month, and has been for over the last year. Low during that period was 8,500, the high 13,000.
These are not huge numbers – the BBTI site has been getting about 8,000 hits a day of late – but they’re not too shabby, either. And what is curious is that in the first few months of 2009, the numbers jumped from about 1,500 to about 4,000 and then to 9,000 – and they have stayed at that higher level since.
I’m not really sure why. There has been something of an uptick in the number of downloads each month during that time period, but it was nothing like a seven-fold increase. It just seems that more people are coming by the site on a regular basis. I suppose it could be tied to the BBTI project, in that there is a link in my bio there to the CoD site, but I’d be surprised if that accounted for all of it.
Interesting.
Jim Downey
(I’ve been working on the care giving book, creating introductions for each month/chapter. This is the one for October, and I thought I would share.)
Jim Downey
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
October: Hospice, or placement?
After all you have been through, after all your care giving, it has come to this: you need help. Not just a weekly break, not just someone coming in to help clean a bit, or check in on your loved one. No, you need some serious help. Because the Alzheimer’s has progressed far enough that it is clear that the end is in sight – meaning more intense care needs, increased physical problems, actual medical attention required.
What are your choices? What are your options?
Because it isn’t a simple matter of “do this, or this.” Insurance coverage varies widely from place to place and plan to plan. Government programs at the local, state, and federal levels all have their own arcane rules. Visiting Nurses associations may be in your area, and able to help. Or not. Hospice programs may exist and be able to provide care. Or not.
It’s a mess, frankly. And you’re probably now so exhausted from the years of being a care giver that you can’t make sense of it. At all. Chances are you’ll grab at whatever straw is first offered. Will it be the right choice?
There * is * no right choice. There is no wrong choice. Come to terms with that now. Or you will beat yourself up for no reason. You can only do the best you are capable, at the time. It may be hospice, if one is available. It may be placement in a full-time nursing facility. It may be something else entirely. You may have little or no control over your choices, and the decision may be made for you by external factors.
Whew – long Skype session with my co-author today. Almost three hours. But very, very productive. We got a little less than halfway through Her Final Year, but were able to work through all the issues up to that point. This will be the last major editing that this part of the book will get before we’re ready for submission. Yeah, there will be tweaks and changes still, but this will put us on the other side of the hill. We’ll finish this tomorrow afternoon.
Interesting process, using the technology this way. Working with a document jointly, in real-time, discussing as we went – pretty cool. And those who know how much I hate telephones will take it as a real measure of just how much John (my co-author) and I are alike, that we were able to do this. That’s easily the longest phone conversation I’ve had this century, perhaps in my life.
So, a bit of a break, then see if I can finish up the tweaks needed on the proposal, so we can send that off.
Jim Downey
*oh, there’s a reason for the reference beyond the content of the post. This is post #910.
Well, if you want it, that is.
See, the query last Friday attracted some interest from an agent, who said that she wanted to see a full formal book proposal from us for Her Final Year. Between getting ready for my class (which is going great, thanks), and getting other promised projects done, I didn’t have a chance to turn my attention to the proposal until yesterday afternoon. After about 8 hours working on it, I got it done – in ‘first draft’ form. It runs some 32 pages.
Anyway, I just thought that I’d make it available, if anyone wanted to get a sense of what the book will be like. This proposal contains a synopsis of each chapter of the book, along with an excerpt from each chapter. I don’t intend this to be a public document, but am willing to share with any friends or readers on a limited basis. And no, I won’t be offended if no one else wants to see it at this time. Feedback on the proposal welcome, but isn’t a requirement to look at it.
So, if you’re interested, drop me a note, or post a comment here.
Jim Downey
As mentioned, the care-giving book is coming together well. As with Communion of Dreams, my Good Lady Wife has taken on the task of finding an agent/publisher for it. To that end yesterday she asked me for another query letter to use for some contacts who wanted a slightly different presentation from the initial query letter we crafted. Here’s a bit I thought I would share, and see if anyone had thoughts on it:
Her Final Year is a joint memoir told using a 12-month format as an analogy for the Alzheimer’s cycle, where each ‘month’ represents one phase of the disease progression. The authors, two men caring for their respective mothers-in-law, explore the process of discovering and dealing with the decline of the family matriarch by interweaving their own thoughts and experiences with what they learned along the way from — and about — health insurance providers, medical professionals, Hospice nurses, social workers and nursing homes. The first part of the book (about two-thirds of the text) ends with the death of the Alzheimer’s patient, but then the second part of the book (subtitled His First Year) is the story of recovery of the men and their families from the care-giving experience, and how they were enriched by it.
Given that there are currently no memoirs from this POV, but that a growing number of men find themselves in the role of care provider, the authors hope that this book will fill a need and find a wide audience. Some people will want to read it straight through as a story of love and redemption, others will use it as a resource by finding which ‘month’ most fits their situation and looking there for guidance and support. It should appeal not just to care providers, but also to people who know someone in that role and wish to understand how best to help them. With the aging of our population, this includes the majority of Americans.
Thoughts?
Jim Downey
Filed under: Aldous Huxley, Augmented Reality, Government, Health, Music, Psychic abilities, Science, Science Fiction, Society, Synesthesia, Writing stuff
Almost 30 years ago I took psilocybin for the first time. I repeated the experience several times over the next couple of years, and have largely spent the time since making sense of the whole thing. Some of this is reflected in Communion of Dreams: descriptions of synesthesia in the book were based largely on my own experiences while under the influence of ‘shrooms, and the use of ‘auggies’ (drugs designed to increase neural processing) were also inspired by those experiences.
But the use of psychedelics was largely from another time. Not the first instance of my having been out-of-phase with the rest of society.
So it’s somewhat surprising to see new research being conducted using these drugs. Research which really should have been conducted decades ago, were it not for the paranoia of the “Just Say No!” years. This weekend’s edition of To The Best Of Our Knowledge provides a nice insight into this:
It’s taken decades for study of mind-altering drugs to be taken seriously. Now a handful of scientists are at the forefront of new research. One of them is Roland Griffiths is a neuroscientist at Johns Hopkins. He’s just turned his attention to psilocybin, a classic hallucinogen commonly known as magic mushrooms. He tells Steve Paulson about his findings.
And:
We hear a clip from Annie Levy who was diagnosed with terminal cancer. In the late stages she took part in an experimental study designed to see if taking psilocybin could help with the fear and panic about dying. In her case, taking a single dose was a life-changing experience in her final months.
It’s a shame, really, that the therapeutic use of hallucinogens has been stymied for so long. There is such a long tradition of using these drugs to access deeper insight and spirituality in many cultures that one is almost tempted to say that humankind’s evolution has been influenced by psychedelics as much as learning to use fire. That we have cut ourselves off from these natural psychotropics is a shame – and again is reflected in Communion of Dreams in how we have artificially lost part of our natural birthright.
Jim Downey
*From the Moody Blues, of course.
“Alwyn? What is it, bud?”
My dog was next to the bushes beside the small porch on the SW corner of our house. This used to be a separate entrance for the doctor’s ‘surgery’, when our home was built 125 years ago. Something under the porch (which is about 4′ off the ground level) had his attention.
I went over to see what it was.
First thing I noticed were the flies.
* * * * * * *
Once I had re-defined the “months” a bit, making the mental shift for ‘October’ to be the start of Hospice/Placement in the Nursing Home, everything else fell into place pretty easily.
I wrapped up October. Actually, it was really pretty easy – straight chronological order (for the most part) of all the blog posts and emails from that period of care-giving. The only real trick was to weave the two different narratives – the ones from Martha and I caring for Martha Sr and the ones from John and Kathi caring for Georgia – together in the most natural narrative.
* * * * * * *
“Ah, hell,” I said to myself. There, under the open porch, were two very small raccoon kits. One was already dead, and had been for at least a couple of days. Hence the flies.
The other one lifted its head from its sibling’s body. Shakily, it stood and looked at me. Four weeks old, at the most.
It fell back down.
“Alwyn, sit!”
He sat, eyes still on the raccoon.
* * * * * * *
November and December were just as straight-forward. First, the month of quick decline, of saying goodbye while you still could, while it still meant something with an Alzheimer’s patient.
Then the month of passing, the end playing out in two different scenarios, but somehow the same. I guess it always is the same, really, when it comes down to it.
The only difficult thing about arranging the entries were the tears in my eyes. They made it a little hard to see.
* * * * * * *
The little kit raised its head again, just above the body of its sibling. It looked me in the eyes.
And never felt the bullet.
Alwyn didn’t flinch – my .22 air rifle is powerful, but nearly silent. I leaned the rifle against the porch, put on my gloves, and crawled in after the kits.
They weighed less than a pound each. I don’t know what had happened to the mother – I haven’t seen a raccoon around, nor evidence of one – but she had clearly been gone at least a couple of days.
But they didn’t die alone. The first had its sibling. The other had me.
Excuse me, I think I need a drink. Been an emotional day.
Jim Downey
There’s a scene in season four of Babylon 5 where Dr Stephen Franklin is feeling flummoxed by a medical problem. Brilliant as he is, he is just not up to resolving the complex task before him, and which he has been struggling with for weeks.
He gets a phone call from his superior officer, who wants to know the status of his work. Clearly frustrated, Franklin says “It’s . . . really complicated right now. I’m trying to keep it all in my head at once . . .”
I feel a little bit like that.
I’ve mentioned working on the care-giving book, and how that is progressing. Right now I’m at the stage where I am going through, attempting to find the natural ‘dialog’ which emerges from the multiple entries by my co-author and I and our spouses. As I’ve noted elsewhere, it’s very much like trying to solve a puzzle of thousands of pieces when you don’t know what the picture is supposed to be. I’m working with a rolling window of three months at a time, shuffling individual entries back and forth until things ‘gel’ into a form that makes the most sense. At present, I’m in August, September, and October – three of the largest months for entries. I’ve got individual entries printed out, clipped into sections, and laid out physically in my bindery – covering the table of my large board shear, my 5’x5′ layoff table, and in four of my large flat file drawers. It’s something like 120 individual entries all together, and like 40,000 words.
And I am trying to juggle all of these in my head at the same time, so I can relate the different entries and find that natural conversation between them. It’s like trying to do some kind of relational database in my head.
I was not trained for this. Writing a novel is tough because you have to constantly juggle all the little bits and pieces so that the plot points come out right and when you want them, the characters are consistent, and no one accuses you of pulling a fast one with some deus ex machina stunt. But at least there I was the one who made up everything, and could tweak it so things would fit. Here I am working with individual entries from four different people, over a period of about five years time. Sheesh.
And then there’s the complicating factor of how emotional this stuff is. Even being somewhat distanced from it, it triggers certain responses – pushes certain buttons.
Well, my lunch break is over. Back to it.
Jim Downey
I’ve mentioned working on Her Final Year, getting things transferred and re-organized. That process continues apace, and is going very well.
One of the things which has struck me recently has been seeing something which I hadn’t planned, but I don’t find too surprising: the structure of the book as we have set it up is reflecting the content of the book. Let me explain.
As I noted previously, the book is divided into “months”, each month reflecting a stage of the disease and the impact that it has on both the patient and care-providers. “January” is just the suspicion that there’s something wrong, “February” is detection of actual symptoms of dementia, et cetera. This way we convert the experience that two families had into a generic template which will fit anyone’s experience with the disease and care-giving.
Well, as we’ve gone through and allocated different entries relating to each “month” (entries drawn from blog posts, diary entries and email) there has occurred a striking distribution: just a very few entries in the early months when dementia is only a minor thing, the total rising until September, October, and November. These are the most intense stages of care-giving, the time when it completely occupies your life. Being in the role of care-provider is a labor of love, but it is also emotionally and physically exhausting – just as the number and intensity of the entries in those months shows.
No brilliant insight in this, I realize. But it is just one of those artistic things – a kind of ‘unity’ of design and message – which is very difficult to achieve intentionally, but is elegant when it happens.
Jim Downey
Whew – this morning I completed transferring entries for Her Final Year from the website my co-author set up so we could jointly work on it, and organizing them into files by “month” (this allows me to print out the entries and shift them around to find a good organic narrative in each month). Anyway, it was the first time that I had an actual sense of just how large a body of material we’re working with. And that material is 98,470 words in the current form – the length of a solid, commercial novel.
Now, there will be some adjustments to that total. Some editing will be done, and we still need to do the introductions for each month. Also, the entire body of the second (shorter) part of the book – His First Year, which is the recovery period following caregiving – still needs to be tallied. Even with trimming, I expect the final version of the book will still be in excess of 100,000 words – likely more on the order of 110,000 to 120,000.
No wonder it seems like a lot of work. It is.
Jim Downey
Communion Of Dreams 