‘Her Majesty’ is curled up on a pink pillow here in my office. She doesn’t venture too far now. Just wanders a bit until I pick her up, take her to be tempted with a bit of canned food, or some water, or a litter box.
* * * * * * *
I just finished proof-reading Her Final Year. This is the version formatted for print-on-demand, so it was a painstakingly close look to make sure that not only had we caught all the little typos and whatnot, but that the layout was right. It took me four days of very close reading to do this – but not nearly as much work as my Good Lady Wife put into preparing the text.
This afternoon I’ll take care of setting up everything for publication of both the Kindle version as well as the print-on-demand version. Probably upload the files tomorrow. Also this afternoon, go over the website design with my GLW, so we can get that going and ready for ‘beta testing’.
* * * * * * *
There’s almost a fear being at this point. A trepidation. Did we do everything right? Will people find the finished product of value? Will we be ignored, laughed at?
I don’t know if it makes sense. But we have a solid 30 months of work in this book. Not just me. Not just me and my wife. Not even just me, my wife, my co-author and his wife. No, we also have about a score of people who have done test-readings and provided feedback. And plenty of friends and family who have encouraged us.
It’s that moment, standing on the edge, looking down, wondering just how insane you have to be to jump out of a perfectly good airplane, trusting to so many things going right or at least not horribly wrong.
* * * * * * *
The emotional sense is right. The echoes of the final days of caring for Martha Sr that come from reading about that experience jibe perfectly as I pick up the cat, settle her on her pillow for one of the last times. The clock clicks, wheels turn.
And soon we will see what happens.
Jim Downey
Filed under: Alzheimer's, Amazon, Feedback, Hospice, Marketing, Promotion, Publishing, Writing stuff
I’ve written a lot here over the last few years on the disfunctional nature of the publishing industry today. This blog was ostensibly started to chronicle the process of finding an agent and/or publisher for Communion of Dreams, after all. That was four years, and almost 31,000 downloads of the book, ago. Trapdoor Books is supposed to publish Communion of Dreams sometime soon, though that has been pending (and driving me somewhat nuts) for four months.
Also pending for four months has been a submission of Her Final Year to a publisher. They were supposed to get back to us a month ago, according to what they told us in our initial submission. A number of other publishers and agents we’ve also contacted have not bothered to respond at all.
Now, I’m not ready to give up on Trapdoor – they seem to be honestly working hard to establish themselves in the “geek fiction” world, and whenever everything comes together to get Communion of Dreams actually published, I think it’ll work to my benefit (and theirs).
But my co-author and I are giving very serious consideration to publishing Her Final Year ourselves. And I would appreciate your feedback on whether we should or not. Let me outline what I see as the advantages and disadvantages
First, and foremost, it gets the book out there where it can do some good. This is actually very important to us – there is a great need for more “nuts & bolts” care-giving information regarding Alzheimer’s/Dementia in general, and from a male care-giver’s perspective in particular. So, immediacy.
Next, there’s cost. Particularly if we concentrate on e-book sales (predominately through Amazon), we can likely keep the price down a fair amount over a conventional paper book (though we would likely set it up so that people could get a Print-On-Demand version if they wanted it). This will help get the book to people who need it. We could designate some portion of all sales to go to charities such as the Alzheimer’s association and still get a fair payment akin to conventional book royalties for myself and my co-author. There’s cost.
We would have more direct control over not just the book, but also for an associated website which could function as a support group for care-givers and their families. We’ve intended to do this from the start, but by bypassing a publisher we avoid issues related to control over the site. That’s control.
The disadvantages? A lot more work. We would probably form a small corporation to function as the umbrella under which all of this would be done. That doesn’t bother me, as I know how to do such things from previous experience with the gallery, but it would be more work and some cost. We’d have to do all the promotion ourselves . . . but these days, authors are expected to take a very active role in promotion, anyway. We wouldn’t have the gravitas of an established publisher behind us, and that would mean limitations in getting the book distributed though conventional bookstores. We wouldn’t have the benefit of an in-house editor and design team. Those are the big disadvantages that I see.
So, I’d like your thoughts. Do you think a niche book like this could be done successfully as a self-publishing project? Would you trust it enough to buy a copy, or would you want to see a ‘name’ behind it? What price point for the electronic version would compensate for that? $9.99? $4.99? Would say a pledge to donate $1.00 from every sale to the Alzheimer’s Assn or a Hospice organization make a difference?
Like I said, we’re giving this serious consideration – but it is a big step. Part of my motivation to do this is just based on how long the whole process of getting Communion of Dreams published has taken (and continues to take). Do you think I am letting my frustration over that outweigh more practical considerations?
Let me know, either in comments here, on Facebook, or in a private email.
Thanks.
Jim Downey
Filed under: Alzheimer's, Art, Babylon 5, Ballistics, Bipolar, Failure, Harry Potter, Hospice, Humor, John Lennon, movies, Promotion, Publishing, Science Fiction, Society
“Vir, do you believe in fate?”
“Well, actually, I believe there are currents in the universe, eddies and tides that pull us one away or the other. Some we have to fight, and some we have to embrace. Unfortunately, the currents we have to fight look exactly like the currents we have to embrace.”
Recently, I came up with an audacious idea. This is something which happens to me now and again. Most of the time, I chuckle over it, consider the possibilities, then let it slide back into the creative froth. But every now and again I get an idea I take somewhat seriously, and consider practically – not so much on whether I think it will work, but on whether I think I can convince enough other people that it will work.
Through the last couple of decades I’ve done better at this than you might think, batting about .500. Here’s a list of the big ones, along with a synopsis:
- Opening an art gallery. This *almost* worked, but remains my most expensive failure to date. It’s very sobering to lose money that belongs to family and friends who trust your judgment, not to mention all the work of yourself, your partner, spouses and employees.
- Writing a novel, and getting it published. Looks like this one will actually work.
- Paint the Moon. My biggest artistic success to date.
- Glass Canopy. This caught the imagination of a number of people, and generated a lot of discussion locally. Now such structures are used elsewhere for exactly this purpose. A failure, but not a total one.
- Nobel Prize for JK Rowling. A debacle, in that so many people hated the idea. But perhaps I was just premature.
- Ballistics By The Inch. A huge success. This was in no way just my idea, and I only did part of the work, but I think the vision I had for how the project would be received was largely mine.
- Co-authoring a care-giving memoir. Still early in the evaluation period on this, so can’t say whether it is a success or not.
And looking over that list, thinking about it, one of the clear things I see which helps make something a success is the amount of work I (and others) put into it. When presented with a zany idea, most people will be amused, say why they think it is crazy, and then more or less forget about it. But if confronted with the fact of an idea made manifest, a lot of that skepticism disappears (or never occurs to people in the first place.)
This isn’t very profound, of course, and certainly isn’t at all new. But I am still somewhat surprised to see how much it actually operates in the real world. It’s like imagination is so difficult for people that they just can’t get past their initial dismissal. I asked for comments on my latest idea, and so far have only heard from one person, who pointed out potential problems with it (this was actually a very helpful response). I can only guess that most other people consider it too nutty an idea to even bother with – but in my gut I’m pretty certain that if this resource existed it would be hugely popular and widely used.
But who knows? Was the voice a ghost or just hallucination? Do you embrace the current or fight it? Failure is real – both due to risk as well as inaction.
Jim Downey
We all die. Only some of us know that our death is imminent. If it turns out that I’m one of those, I hope I’ll be able to come to terms with it with the kind of grace Mike Celizic did.
Edited to add: No, there’s no subtext here. I’m not trying to prep my friends for any bad news. Sheesh, people, you know I’m more blunt than that. I just thought it was a good article.
Jim Downey
Via PZ.
Filed under: Alzheimer's, Ballistics, Book Conservation, Guns, Health, Hospice, Marketing, Predictions, Promotion, Publishing, Science Fiction, tech, Writing stuff
As I have done for the last couple of years, I like to look at the stats for my sites on New Years Day – numbers don’t lie.
But they can be a bit confusing. Here’s how. In 2009, I could say that 9,619 people downloaded some or all of Communion of Dreams. That would break down as 5,877 downloads of the original “complete” .pdf of the book, 156 copies of the revised version, 3,183 of the first mp3, and 403 copies of the first chapter. Or I could say that there were a total of 6,765 downloads, using the numbers for the “complete” .pdfs plus the minimum downloads of both the mp3 and individual chapter files (on the theory that those numbers reflect “complete” downloads of the book in those formats.) For my year-end numbers in the past I have used the latter formula, and I will do so again.
So, 2009 had 6,765 downloads. That compares to 6,288 in 2007, and 6,182 in 2008. How many people have actually read the book, I have no idea – I have heard from people that they have passed on the .pdf they downloaded to friends, and others have told me that they printed the thing out and gave copies to others. So that would boost the numbers. Then again, just because someone downloaded the thing, doesn’t mean they read it. Lord knows I have plenty of books I own but have never gotten around to reading.
Which brings up another item – back in August I mentioned that I was working on a revision because there was a publisher who was interested in the book. In November I mentioned that I had submitted the manuscript with the revisions, and was waiting for them to take another look at it. Well, I’m still waiting, though the publisher said that he was going to assign it to one of their readers and go through it himself, and would get back to me soon. I’m not complaining about the wait – six weeks or so is not at all unreasonable – but I do wonder whether he just didn’t want to give me the bad news leading up to the holidays. So, we’ll see what comes of that.
I’m also in a “wait and see” mode on my two other writing projects. My co-author on the caregiving book Her Final Year still has to finish his editing before we can proceed with that, and I haven’t had a chance to get together with my sister to really get started on My Father’s Gun. But now that the end of the year is past, I hope to make progress on both of those soon.
Other aspects of life in 2009? A mix. I did get a lot of good conservation work done, though losing the one big client in the fall due to the economy hurt a lot – I have other work, but nowhere near as much, so that has hindered my efforts to resolve long standing debt leftover from the gallery. My health is better than it was a year ago, but I still need to lose several stones. The BBTI project was a huge success through 2009, and I’m sure will continue to be a source both of work and pleasure in the coming year. Otherwise, well, if you read this blog you probably already have had your fill of my introspection.
So, goodbye 2009, and best wishes to one and all for a better 2010.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, Gardening, Guns, Hospice, Politics, YouTube
Sorry I’ve been busy and not writing as much here – I’ve been juggling a number of things all at once, some of which has sucked up a lot of my creative energy. A partial list:
Getting work done on the major upgrade for BBTI (check out this post on the blog!)
More work on the Caregiving book – I think we’ve now finished with all the material we’ve written about the experience previously, as well as a lot of ‘primary source’ material (emails, LiveJournal entries, et cetera). Gathering and selecting all of this has been a significant task, as well as a powerfully emotional one. Now that all that is together, we need to switch gears and go through it all with an eye to tweaking and editing – another big job.
Have another iron in the fire related to some local/neighborhood politics and personal stuff that has sucked up a fair amount of energy.
Trying to get back on my feet with my conservation work, as well, of course.
And then there’s the necessary (and enjoyable) parts of living in an old house with a big yard and a garden – it’s that busy time of year for such things.
And that’s a partial list. Have some other things going on that are entirely speculative, not to mention the usual day-to-day stuff of living and owning your own business.
But you know, it feels pretty good.
Cheers!
Jim Downey
Spent a chunk of this morning working on the care-giving book, and came across this post:
October 23, 2007, 10:22 am | Edit this
Filed under: Alzheimer’s, Health, Hospice, Science, Sleep, SocietyMade a routine trip to the big-box store this morning, to stock up on catfood. I got one of those large boxes of 48 cans of different flavors my cats like. And when I went to put it away, the “easy open” tab didn’t. Instead, I wound up just destroying the whole box, ripping and tearing, so I had access to all the cans included.
It felt wonderful to be so destructive.
There are days like that for all of us. After a trip to the store, dealing with idiots who don’t know how to negotiate a check-out line. Or sitting behind the twit at the stoplight who somehow misses that the light changed and the cars in the other lane are passing him, getting his shit together just in time to slip through a yellow light and leave you sitting there for another cycle. Whatever it is, you just want to take out your frustrations in a safe and relatively sane way.
I have these days a lot. Part of it is just the toll of being a long-term care provider for someone who has a tenuous grip on reality but can be amazingly stubborn and focused in her determination to do something unsafe (or just highly annoying). But part of it is simply the effect of long term sleep disruption/deprivation that goes with providing care around the clock. I’ve known this for ages, and written about it several times. Anyone who has had insomnia, lived with an infant, or just had a bad string of luck sleeping for a few days will understand completely how grumpy and intolerant it can make you.
And I chuckled a little bit at myself. It’s helpful, and part of the healing process, I’m sure. Why? Well, because last week I picked up another such box of catfood. And I carefully, quickly, and with little real thought disassembled the box – not just opening it as intended, but popping the flaps off at each end, so the whole thing would flatten perfectly for recycling. Then I put away the catfood, and folded the box and put it in the bin for recycling.
What a difference 15 months has made.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, NPR, Predictions, Preparedness, Science, Sleep, Survival
No, I don’t know what it means.
It was one of those things I woke up thinking in the middle of the night, a week or so ago. So I wrote it down.
Why did I wake up in the middle of the night, thinking such a thing? Good question. It was about 3:00, the usual time I would wake and go check on Martha Sr the last couple of years of her life. And even though it’s been almost a year since her death, I still wake about that time fairly often. I try and get back to sleep, and usually succeed. Because I know sleep is important to my recovery.
I’ve mentioned several times the steps I am taking to get my health under control, and why. For the last six weeks now my blood pressure has been stable in the 145/85 range. Still high, and next month when I see my doctor we may need to tweak my dosages again, but about 90/40 points better than it was three months ago. The meds I’m taking, a beta blocker and a calcium channel blocker, are doing their jobs and helping me detox from my cortisol and norepinephrine overloads, but I’m not past it all yet. My waking at night, even occasional bouts of insomnia, are evidence of that.
And researchers have added another level of understanding to just how dangerous this sleep disruption is:
Morning Edition December 24, 2008 · The human heart requires a certain amount of sleep every night to stay healthy, and that link between sleep and heart health is stronger than researchers suspected, according to a report in the Journal of the American Medical Association.
* * *
When they put it all together, the researchers got a surprising result. Among these healthy, middle-aged volunteers, those who averaged five or fewer hours of sleep had a much bigger incidence of silent heart disease.
“Twenty-seven percent of them developed coronary artery calcification over the five years of follow-up,” Lauderdale says. “Whereas among the persons who slept seven hours or more, on average, only 6 percent developed coronary artery calcification.”
In other words, the sleep-deprived people had 4.5 times the risk of heart disease — and that’s after researchers subtracted out the effects of other known coronary risk factors, such as high cholesterol, high blood pressure, diabetes and smoking.
It remains to be seen why too-little sleep is linked to clogged coronaries. Maybe it has something to do with stress hormones. Lauderdale says other studies have shown that depriving people of sleep raises their levels of cortisol, one stress hormone.
I don’t yet have any indication of serious heart disease. The preliminary checks from visiting the doctor over the last few months haven’t turned anything up, but she has been mostly concerned with getting my blood pressure under control. We’ll be doing a more complete exam in the new year, now that this other issue is less of an immediate concern.
That’s not to say that I expect that we’ll find anything. But neither would it surprise me if we did, given what else I know about what the stresses I’ve placed my body under over the last five years. I’ve been my own puppet, dancing at all hours.
Maybe that’s what it means.
Jim Downey
“I’m glad it was just the two of us. Seems appropriate.”
* * * * * * *
My wife’s family settled in Missouri in the Nineteenth century. I don’t know (or I should say, don’t remember) all the details, but they wound up south of here in Maries County. They started a small community which no longer survives, and a church there that does. The family still meets in the church annually for a John Family reunion.
I’ve mentioned previously my own connections to the southern part of the state, and how much I actually enjoy going there. Particularly this time of year, when the air is crisp but not cold, when there is fall color starting to settle onto the trees. It’s the reason my wife and I decided to get married in October.
So there was some pleasure in the drive today down highway 63. But still, we both cried.
* * * * * * *
I spent some time this afternoon reading journal entries from my partner in writing, dating back to the early onset of his mother-in-law’s Alzheimer’s. Raw stuff. Honest stuff. Bits about some of the early signs of declining mental ability, confusion about where she was, what was happening. How he and his wife were trying to cope with it. And now and then, when his MIL had a particularly bad period, or her health required hospitalization, wondering how long it would be before “Mumsie” passed away, how long he would be able to see through the role of care providing.
Thing is, this was *two years* before her actual passing.
Sometimes, the only way you can keep going is if you don’t know how long you’ll have to do so. If you knew the true length of the road ahead, and the condition of it, you’d be too likely to give up.
* * * * * * *
This evening I’ll fast after dinner. I go in in the morning and have blood drawn for tests, and later this week I’ll meet up with my doctor for a follow up to my earlier exam. We’ll find out what things other than my blood pressure need attention. We’ll also see if I need to do something in addition to the beta blockers mentioned in that post – possibly, though my bp is down 50/20 already. This is a huge improvement, though I have about that much further to go to get to ‘normal’. Yeah, like I said, it was scary bad.
But I’ve begun to notice other improvements. I sleep longer, better. There are even nights when I don’t wake up at 3:00, listening hard for the sound of Martha Sr’s breathing over the baby monitor.
* * * * * * *
“What are you thinking?” my wife asked.
I watched leaves skittle across the road, tumbling in the draft of the car ahead. A wide and glorious vista opened to the north, ridge after ridge of green, little clusters of other colors here and there. “Lots of things.”
Yeah, lots of things.
“”I’m glad it was just the two of us. Seems appropriate.”
She nodded.
“I mean, we were with her pretty much on our own. It just seems appropriate that it was the two of us to bury her cremains.” I paused, thinking of the memorial service. That was for the family, for the friends. We’d decided on making the trek to the family church, where there is still half the graveyard reserved for family members, on this day, because it was the anniversary of her parents.
I’m an atheist, and I don’t believe in the survival of the soul or any such. But it seemed like the appropriate day to bury Martha Sr, there next to her husband. And that Martha Jr and I should be the ones to do it.
I now know how long the road is, and in what condition. But I am glad I drove it the full distance.
Happy anniversary, Martha and Hurst.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Preparedness, Sleep, Survival
I mentioned in a comment on UTI yesterday that I had a doctor’s appointment, and expected to find there that I had a respiratory infection that needed treatment. Well, I did, and I do, and now I’ve started a 10-day regimen of antibiotics.
But that’s not the reason why I made the appointment two weeks ago.
* * * * * * *
Almost a year ago I wrote a very raw and painful post titled “Beats having a heart attack.” Here’s the crucial passage:
And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s.
Well, I didn’t have a heart attack. And I wasn’t done. We made it through six months of hospice care for Martha Sr – easily the most demanding period of care providing. But that doesn’t mean that there wasn’t a cost to me, physically.
* * * * * * *
I sat in the exam room, waiting to meet the new doctor. My face was flushed, my heart racing. I was having a low-grade anxiety attack.
No big deal, right? Lots of people get nervous around doctors.
But I don’t. Hell, I put myself through grad school working in an outpatient surgery unit. Because it was a remote location far from the central supply facility for the hospital, they had established a large sterile storage area adjacent to the 8 surgical theatres. For five years I manned that storage area, keeping the surgical teams supplied. And I was in an out of operations constantly, bringing necessary sterile supplies to the surgical teams. Even my designated break room was shared with the surgical staff. In that five years I got to see and know a lot of doctors in almost every imaginable medical situation, as well as personally. I’ve never been nervous around doctors since.
The doctor knocked and then came into the room. I was sitting on the exam table, still fully clothed. I hadn’t been told to undress or anything by the aide who had parked me there half an hour earlier, so there was no modesty issue connected with my anxiety.
“Hi, I’m Dr —.”
“Jim Downey. Pleased to meet you.”
She held out a hand, relaxed. “Likewise. What can we help you with today?”
I shook her hand, then passed to her a book I had been browsing through. One I had seen on the shelf there in the exam room. “This was my life for the last 5 years.”
* * * * * * *
I’ve talked about the stress of care-giving before, and how I am now in a detox period from a prolonged norepinephrine saturation. As I wrote in June:
The problem is, those stress hormones come with a price – they exact a toll on the body. For most people, occasional jolts of this stuff isn’t really dangerous, but for someone with a heart condition or an aneurysm waiting blow, such an event can kill. That’s why you see those warning signs on roller coasters.
And consider what happens to someone who slowly ramps up their stress hormone levels over a prolonged period. That’s me. My formerly excellent blood pressure and heart rate is now scary bad, and has been for a while. I’m lucky that I started this in good condition – but think back to this episode last year, and you’ll see what kind of effect the excessive stress hormone levels had. In the final year of care giving, my system became saturated with stress hormones – my ‘fight or flight’ reflex changed from being related to a sudden threat to being an ongoing condition. I adapted.
That was why I made the doctor’s appointment. And the reason I was nervous was because I was afraid of what the cost I had imposed on my body actually was.
* * * * * * *
Dr — took the book, looked at it. She nodded, then looked at me. “Tell me about it.”
We talked.
We talked about the care-giving, when it ended, what I had tried to do to care for myself during and since. She looked over my records, asked a few questions, did a few of the typical exam things doctors do to confirm their innate understanding.
“Well, let’s treat this respiratory infection.” She paused, looked at me. “You know, your blood pressure is quite high.”
Actually, my blood pressure was scary bad. When the aide took it earlier, she was startled by how high it was. Let’s put it this way – it’s in the range where if it were just a bit higher, hospitalization would be indicated in most cases. If I walked into an ER with that blood pressure, people would start rushing around.
“Yeah, I’m not surprised.” I told the doctor what I’ve said in those post cited above.
She nodded, realized that I knew what I was talking about. “How would you feel about starting a drug therapy to get it under control?”
“What did you have in mind?”
“Beta blocker.” She looked at me. “You may not need to be on it forever. The other things you are doing and recovery from the care providing might be sufficient – later. But for now, I think it would be wise.”
It was the right call. Beta blockers act specifically to counter the effects of stress hormones, especially norepinephrine.
“Sure. Let’s do it.”
* * * * * * *
So, that’s part of the cost of care-providing, documented by medical authority. It’s too early to say whether this drug therapy will be sufficient. I do still need to shed weight (though I’m now only about 20 pounds over what was my ‘normal’ weight about ten years ago), and keep an eye on diet and exercise, control stress, get plenty of sleep. And there’s no way to say how much long-term damage I did to my system by my period of high blood pressure (which increases the risk of stroke, dementia, heart disease and kidney damage). There’s no indication yet that there’s been any long-term damage, but . . .
I’m still glad I did it.
Jim Downey
Communion Of Dreams 