Communion Of Dreams

Beats having a heart attack.
September 17, 2007, 8:57 pm
Filed under: Alzheimer's, Bipolar, Depression, Failure, Health, Hospice, Sleep, Writing stuff

This is pretty raw. I reserve the option to amend or delete it entirely later.  [9/18 7:15 AM: I’ve added a postscript – see below.]

I’m worn out. I’m emotionally and physically bankrupt. I’m spent, empty. Just a dry husk.

It was a *very* long day. Started with the migraine I mentioned in my previous post. Then care-giving was really rough. Worst it’s been, and that’s saying something. I don’t know whether my MIL had another little stroke, or is fighting an infection, or is approaching the end of her life, but damn – every fifteen to twenty minutes today I had to go tend to her, see what she needed. It was always some variation on the theme of her “needing to get ready to go home”, or wanting to “look outside to see if her ride is here,” or “needing to call the people she usually lives with in order to let them know that she was here”. I tried everything I know or could think of – distraction, answering questions, asking questions, reassuring, re-directing, lying outright – and nothing, nothing, would stick. Ten or fifteen minutes after I had gotten her calmed down or focused on something else, or whatever, she’d call again.

And this, of course, on a day when I was really trying to concentrate, punch through the mild migraine, get some conservation work done. Some rather delicate conservation work, at that. Work which had been promised to a client two weeks ago.

And, of course, my wife had a thing this evening that she had to go do (my suggestion that she do so – no fault to her). She got home after I had my MIL tucked in to bed and was working on the dishes.

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. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.

So, that was that. I looked my own failure to continue right in the eye, and told my wife. I can’t continue to do this. I can’t deal with another day like this. Maybe later, but not now.

I thought earlier that I could do this indefinitely. But it has gotten so much harder in recent weeks. I don’t like to fail at something. I don’t like to set aside a job before it is done.

But it beats having a heart attack.


Like I said at the outset, that’s pretty raw.  And I’m going to leave it as is, though following 8+ hours of sleep I feel better and have a different perspective on things.

This is one of the functions that this blog serves for me: being a form of therapy, allowing me to express things in a way that allows me to vent and get some perspective.  I get it off my chest, so to speak.

And it serves another, related purpose: to help others understand just how difficult and demanding it is being a care-provider for someone with dementia,  to share with other care-providers my stories as a form of support.  And here, I am talking about those who choose to be care-providers for friends and loved ones at home.  Professionals who do this, God bless ’em, do not have the same perspective: they get to go home at the end of their shift (or even their double shift, in rare circumstances).  Doing this at home means you never get to leave.

I am by no means a ‘weak’ person.  Not physically, not intellectually, not emotionally.  And yet you can see what effects the constant, unending wearing has on me.  There’s a good reason why care-providers suffer huge stress-related illness, including, yes, heart attacks.

As I said, this morning I feel a lot better.  The migraine is just wisps and echoes, and I hope it remains that way.  I have this trip to meet with my new client and pick up the first lot of books, which means a couple of hours road time to allow the worries and cares to unspool behind me a bit.  Just getting out of the house for the bulk of the day will help.

I do not know where we go from here.  My wife and I discussed my exhaustion last night, when I told her that I was “done”.  But since we were already going  to change the care-giving package to allow me more time to concentrate on my conservation work in the coming months, it may be that we keep my MIL here at home and I just try and ride this out, knowing an end is in sight.  (As I told the social worker for Hospice when we first hooked up, “I can sleep on broken glass for six months, if I know that’s the end of it.”)

So, no fretting – I’m better this morning.  And while I cannot control what might actually happen to me vis-a-vis my health (beyond doing what I can to stay healthy), I’m no longer even contemplating a heart attack as a good alternative strategy.

Jim Downey

September 17, 2007, 7:00 am
Filed under: Alzheimer's, Book Conservation, Comics, Health, Migraine, OOTS, Sleep

I’ve suffered periodic bouts of migraines since adolescence. I know there are some food triggers, and I know that physical and emotional stress also can start a cycle. I even have “stress release” migraines, when some particularly difficult or demanding situation is over. I know several different types and intensity of migraine, from the ones that just make you a little miserable for a few hours to the ones that make it a almost impossible to get out of bed for two or three days. But most of all, I know that modern medicine offers me no real hope of relief from the damned things, and the best I can do is deal with them symptomatically with a range of mild to powerful narcotics.

Yeah, I’ve got a migraine. Been keeping it at bay for the last few days, having sometimes to resort to the least powerful of my Rx meds. Gah. Makes it hard to get anything done, and I have a *lot* to get done – a book conservation project I promised a client two weeks ago, a trip to pick up the first installment of books for the new client tomorrow, interviews with a reporter about being a care-provider, et cetera. Charming.

But at least OOTS is back from hiatus!

Jim Downey

“X” marks the (new) spot.

As I mentioned the other day, news of the new Google Lunar X Prize organized by Peter Diamandis is getting a fair amount of attention, and appropriately so. It’s good to see Diamandis pursuing his dream, as I wrote about in this post about the Heinlein Centennial Gala:

And then Peter Diamandis‘ brilliant, inspiring presentation about how he considered Heinlein to have written not just visionary fiction, but had actually mapped out a functional business plan with The Man Who Sold the Moon. Diamandis said his dream, his goal, was to be there to welcome NASA back to the Moon when the Constellation Program vehicle arrives. This brought a standing ovation and cheers.

Indeed. And with the new Google Lunar X Prize, there’s a fair chance that could actually happen. If private space companies can land a remote-operated vehicle on the Moon under the prize guidelines by 2013 (most people are of the opinion that it’ll happen sooner), then I’d bet that scaling up the tech used to accomplish that to have people – perhaps even Diamandis himself – on the Moon before NASA’s target date of 2020 for Constellation is certainly possible. Remember, we went from having barely function sub-orbital craft to the Apollo 11 Moonshot in just 8 years.

One of the things I find particularly interesting is a bonus possible under the Google Lunar X Prize guidelines. Here it is:

• BONUSES: An additional $5 million in bonus prizes can be won by successfully completing additional mission tasks such as roving longer distances (> 5,000 meters), imaging man made artifacts (e.g. Apollo hardware), discovering water ice, and/or surviving through a frigid lunar night (approximately 14.5 Earth days).

That one bit right there in the middle that I bolded is what I’m talking about. It simultaneously nods to the accomplishments of NASA and also thumbs its nose at the agency. It perfectly sums up the mixed emotions many in the private sector feel about the government’s involvement in space exploration and development: respect for what was accomplished in the past, yet a burning desire to prove that the private players can do more, do it faster, and do it for less money.

I haven’t begun work on it yet, but one of the ‘intervening’ novels of my future history series (between Communion of Dreams and the prequel I’ve started titled St. Cybi’s Well) would be set sometime in the 2030s at one of the Israeli colonies on the Moon. The main character would be an artist who is on sabbatical there, exploring how the space environment effects an aesthetic sensibility. And one of the scenes I’ve envisioned would have him visiting the site of the first Lunar Landing, which has been carefully secured to preserve it as it was left by Armstrong and Aldrin, in order to use the site as inspiration. I must admit, I sort of hate the thought that there would be additional rover tracks there in order that someone could claim a bonus for the X Prize.

Jim Downey

September 15, 2007, 10:45 am
Filed under: Connections, James Burke, MetaFilter, Science, Society, tech, YouTube

Via MeFi, this link to the YouTube collection of vids of the “Re-Connections” show – a look back at James Burke’s Connections program on the 25th anniversary of their initial broadcast.  Non-TV-watching heathen that I am, I didn’t catch this when it was initially broadcast, so I am looking forward to enjoying it this weekend.  Thought I’d share, since I had written previously about Burke and his different series.

Perhaps more later.

Jim Downey

The morning after.

Yes, I should write about the Google X Prize. I’ve even met Diamandis, at the Heinlein Centennial. But it’s been getting substantial coverage in the media. I do have some thoughts beyond “that’s cool” – but am, I think, understandably preoccupied with other personal matters right now. Perhaps this weekend.

OK, things are still sinking in, vis a vis my post yesterday. To a certain extent I feel like my life has just undergone a paradigm shift, as nothing has really changed and yet I see most things in a different light altogether.

A couple of friends have been a little surprised at my wariness about this change. I guess that I have been so conditioned at having people not do the right thing that I am somewhat stunned that this institution is going the right direction with this collection. And, honestly, I’m not used to the notion that things might be going the right way for me, as well. But I meet with the head librarian next Tuesday to iron out details and get the first installment of books, so it really looks like this is going to happen.

I’ll need to make some actual changes in how I work. Since closing the gallery, I’ve been fairly casual about my work hours and the ‘business end’ of the business. I think that’s understandable, since my primary concern has been caring for my MIL, not being a conservator. So I need to lay in some additional supplies, get a large fireproof safe, sort out my accounting software, streamline some of my work habits, establish standardized tracking procedures for handling this volume of work, et cetera. All stuff I know I can do – I ran an art & framing business which had multiple employees and scores of artists we represented for five years – it’s just a matter of getting all the procedures and software set up properly.

So, while I still feel astonished, and pleased, I’m less frightened. Typical for me: I can face just about anything, so long as I have good information and the freedom to sort it out and come to terms with it.

Jim Downey

September 13, 2007, 12:29 pm
Filed under: Alzheimer's, Book Conservation, General Musings, Hospice, Predictions, Society, Writing stuff

Well, that’s a bit of a surprise. More than a bit, to be honest.

I wrote back in May about meeting with an institutional client concerning a large collection (some 7,000 volumes) they had recently acquired, and how the initial expectation on the part of the administration at this institution was that all the books needed to just be rebound to look pretty. I mentioned that my suggestion of proper conservation treatment was completely foreign to them, and that I really didn’t expect that they would want me to do the work for them.

Well, I guess the conservation treatment I gave the three books I worked on as an example of what I do changed their minds. Because I found out this morning that they want me to do the work.

Frankly, I’m astonished. And pleased. Also a bit scared.

“Astonished” I’ve explained. “Pleased” is probably self-evident: this is a worthy collection of significant historical works that deserves proper care, and I know I can provide that care. And this is a multi-year project, meaning some security in terms of income and planning.

“Scared,” though? Well, yeah. This means a lot of work – good work, granted, on my own schedule, but the client will (understandably) want a large volume of books cared for and returned on a regular basis. And right now I can barely manage to concentrate sufficiently to do conservation work for a couple of hours per week.

Now, they don’t expect me to start handling that volume right from the start. I had told them from the beginning that I would need to ramp-up how much work for I did them, as I met previous obligations to other clients. I didn’t tell them about the other major factor limiting my time and energy, though: caring for my MIL.

My wife and I discussed this issue when I was first contacted by this institution, because frankly there is no way I can do the conservation work at that level and still be the primary care-provider for my MIL. So now we’ll need to sit down and sort out how we proceed. I could basically swap places with my wife, in terms of my “working” four days a week and her being home here to care for her mom (she’s an architect, and with some logistical shuffling she could do a limited amount of work from home). That’s one option. We might also consider others, perhaps making more use of the services available through Hospice.

And, of course, my MIL could die this week or next and make all question of needing to worry about such things moot. But that’s not what I hope for, nor how we can plan. Rather, we need to plan as though she is going to be with us, and still requiring substantial attention and care.

So, this means change. Perhaps a little sooner, and in a different manner, than I had been thinking about recently. And change can be a little scary.

Not that it’ll stop me, or even much give me pause.

Well, speaking of such things, I have conservation work that needs doing . . .

Jim Downey

Over 5,000
September 12, 2007, 8:50 am
Filed under: Alzheimer's, Book Conservation, Feedback, Flu Wiki, Promotion, Publishing, Writing stuff

Brief note – thanks, I think, in large part to folks from the Flu Wiki, I’ve had over 600 downloads of the novel in the last 36 hours or so.  That puts the total downloads over 5,100.

I guess I really should get off my butt and contact some agents again.  Too bad I’m exhausted – my MIL had a rough night of it (I was on call), and I have a backlog of conservation work to catch up on.

But I thought I’d share the good news.  Maybe more later today – right now I need a nap.

Jim Downey

Flu Wiki
September 11, 2007, 1:19 pm
Filed under: Flu, Flu Wiki, Government, Health, Pandemic, Predictions, Science, Science Fiction, Society

Another post today – there’s a Flu Wiki which may be of interest to folks who read this blog.  From the site:

The purpose of the Flu Wiki is to help local communities prepare for and perhaps cope with a possible influenza pandemic. This is a task previously ceded to local, state and national governmental public health agencies. Our goal is to be:

  • a reliable source of information, as neutral as possible, about important facts useful for a public health approach to pandemic influenza
  • a venue for anticipating the vast range of problems that may arise if a pandemic does occur
  • a venue for thinking about implementable solutions to foreseeable problems

Looks like a great resource, and since someone on the related forum was kind enough to post a link to Communion of Dreams as a “SF novel about post-pandemic world”, I thought the least I could do is return the favor.  Because sure as hell, we’re going to get hit by a pandemic flu one of these days, and the more resources people have available about how to cope, the better.

Jim Downey

RFID chips = Tumors?
September 11, 2007, 11:24 am
Filed under: Government, Health, movies, Predictions, RFID, Science, Science Fiction, Society, tech, Wired, Writing stuff

[This post contains spoilers about the plot of Communion of Dreams. I’ll attempt to minimize how much I reveal in the course of discussing this topic, but you’ve been warned.]

RFID tagging is a popular plot device in a lot of movies and fiction, as well as a functional tool for commerce and security. But a lot of people have concerns about how suitable this tech is for the way it is being applied. Let’s put it this way: if you don’t already have a RFID-blocking wallet for your passport (and soon your credit cards), plan on getting one. The authorities claim that RFID passports and other devices are secure, since they can only be ‘read’ by machines at close encounter (just a couple of inches), but hackers have already established that such devices can be read at up to 10 yards.

Anyway, RFID tags are also popular for pet owners, who will ‘chip’ a pet with ID info in case it is lost. Likewise, the tech has been used for monitoring seniors who live alone and for anti-kidnapping devices.

But it seems that there may be medical concerns about implanting the chips into tissue. Concerns which were ignored by FDA. From an AP article the other day:

When the U.S. Food and Drug Administration approved implanting microchips in humans, the manufacturer said it would save lives, letting doctors scan the tiny transponders to access patients’ medical records almost instantly. The FDA found “reasonable assurance” the device was safe, and a sub-agency even called it one of 2005’s top “innovative technologies.”

But neither the company nor the regulators publicly mentioned this: A series of veterinary and toxicology studies, dating to the mid-1990s, stated that chip implants had “induced” malignant tumors in some lab mice and rats.

“The transponders were the cause of the tumors,” said Keith Johnson, a retired toxicologic pathologist, explaining in a phone interview the findings of a 1996 study he led at the Dow Chemical Co. in Midland, Mich.

What’s even better is that it seems as though the man who was the head of the agency which made the decision then went to work for one of the major corporations pushing the technology:

The FDA is overseen by the Department of Health and Human Services, which, at the time of VeriChip’s approval, was headed by Tommy Thompson. Two weeks after the device’s approval took effect on Jan. 10, 2005, Thompson left his Cabinet post, and within five months was a board member of VeriChip Corp. and Applied Digital Solutions. He was compensated in cash and stock options.

Compensated to the tune of options on a quarter-million shares of stock and some $80,000, according to Threat Level.

Pretty sweet, eh?

Anyway, this whole notion of integrating tech into our actual bodies is a mainstay of SF, and I do a lot with it in Communion, because I see it as likely that this is where we’re headed. That doesn’t mean that it is a good idea, though, as the example of the RFID chips being suspect shows.

And here’s where we get into the Spoilers:

For Communion, I suggest that there are two options for the human race: to continue down a path of integration with our technology, becoming increasingly ‘enhanced’ and wired and decreasingly human; or to embrace something of the sanctity of the human form – we can use technology, but not become merged with it. This happens via the connection with the alien artifact, which revitalizes aspects of our human ability which had long been suppressed. That the flu virus which had threatened human extinction turns out to have been an artifact of our own technology is just reinforcement of this metaphor.

Don’t mistake me – I am not a technophobe. If I need an artificial heart valve, or a pacemaker, or any similar tech bit installed in my body, then I’m fine with that. But I think the larger issue of integrating optional tech into our bodies will be fraught with dangers, and should not be embraced without real consideration – and I’m not talking about the kind of consideration that the RFID chips got from the FDA.

Jim Downey

September 11, 2007, 6:38 am
Filed under: Feedback, Writing stuff

I got this note from “Tom” at Daily Kos (I’ll let him ID himself further if he wants):

I clicked to your site from your sig at Daily Kos. I plan on reading Communion of Dreams. Thanks for putting it up for download.

I am not one to give advice, but I will offer this: Can you slap up a summary of the story, from 150 to 250 words, on the home page? I’d expect it to raise the number of readers, and help agents or publishers describe it quickly at their meetings.

Duh! Like most bits of really good advice, this is completely obvious – once it has been suggested.

Thanks, Tom. Of course I have summaries and complete plot outlines, et cetera. I’ll sort out what works best and post it off of a link on the homepage for Communion so that it is easily accessible but the spoilers are not there on the front page.


**Afternoon edit:**

OK, so in thinking about it, I decided that I do need something brief on the actual homepage, rather than as a link to elsewhere.  This is what I came up with for a brief blurb, as you might find on the back of a paperback book:

Communion of Dreams is an “alternative future history” set in 2052 where the human race is still struggling to recover from a massive pandemic flu some 40 years previously.  Much of the population is infertile.  National borders and alliances have shifted.  Regional nuclear wars have prompted some countries to turn to establishing settlements in space, and there’s a major effort to detect Earth-like planets in nearby star systems for future colonization.  Fringe eco-religious groups threaten to thwart the further advancement of science and technology, and resist any effort to spread humanity to the stars.

When an independent prospector on Titan discovers an alien artifact, assumptions based on the lack of evidence of extra-terrestrial intelligence are called into question. Knowing that news of such a discovery could prompt chaos on Earth, a small team is sent to investigate and hopefully manage the situation.  What they find is that there’s more to human history, and human abilities, than any of them ever imagined.  And that they will need all those insights, and all those abilities, to face the greatest threat yet to human survival.

What do you think?

Jim Downey