Communion Of Dreams

Seems a bit ridiculous for someone 6′2″ and pushing 250 pounds to be “feeling small”, but that’s about the best characterization of my emotional state today. Bit of a headache, some intestinal issues - not ’sick’ exactly, but just under the weather.

And what weather. What was mostly sunny and near 70 yesterday and Saturday is cold, grey, wet and very unpleasant today. 35 for the high, sleet/freezing rain this afternoon and snow scheduled for tonight and tomorrow. The kind of day that makes the cats curl up on the radiators and refuse to budge.

Both my good lady wife and I are feeling this. I think it is just part of the natural let-down, the ebb & flow of recovery from being care providers for so long, of grieving. I cross posted this diary (with some additional explanatory material) to Daily Kos yesterday, and it generated some really good discussion. But I think it left me feeling a bit wrung-out. For the longest time I have been able to attribute any mild depression or exhaustion to the stress and demands of care-giving, but the fact remains that I do have a mild bipolar condition. I suspect that for a while things are just going to oscillate before reaching some kind of equilibrium once again.

So, take it a bit easy today. Maybe go watch Blade Runner or something this morning, then see if I can accomplish some more conservation work this afternoon. One step at a time.

Jim Downey

Whoa - this is *such* an improvement!

garfield minus garfield

Who would have guessed that when you remove Garfield from the Garfield comic strips, the result is an even better comic about schizophrenia, bipolor disorder, and the empty desperation of modern life? Friends, meet Jon Arbuckle. Let’s laugh and learn with him on a journey deep into the tortured mind of an isolated young everyman as he fights a losing battle against lonliness and methamphetamine addiction in a quiet American suburb.

Jim Downey

Hat tip to Tim! Cross posted to UTI.

I was going to title this “I’m sick and tired . . . of being sick and tired.” After yet another night of coughing jags, tossing and turning, getting up to take OTC meds every couple of hours, and generally being miserable in this tenth day of this flu.

But then I popped that phrase into Google, to see why it echoed so from my childhood. And a couple of clicks later I found this, and was humbled.

My tendency to feel sorry for myself is not one of my most attractive traits. I can only say that it usually is a sign that I am bottoming out, and before long I will be climbing back out of my own personal pit of despair (whether it is caused by health problems, my mild bi-polar condition, or some other source). It’s that Emerson quote, again.

So, sorry about that, Fanny Lou. Didn’t mean no offense.

Jim Downey

I suffer from a mild form of bipolar disorder, as I have written about previously. Looking back, it started in adolescence, though I didn’t understand what was going on until my mid-20s. It is mild, though, and I have never suffered either a hypomanic or major depressive episode (though I have had some very dark periods), and have been able to control the disorder with minimal impact on my life. In this sense, I guess you can say that I am a little bit crazy - nothing major, nothing which requires hospitalization or heavy pharmaceuticals, nothing which puts my life at risk. I’m just a little bit crazy.

Being a ‘little bit crazy’ isn’t like being a ‘little bit pregnant’ - there is a range of severity with any mental health issue, just as there is with almost any other kind of health issue. You can have a mild case of the flu, which can be annoying, but doesn’t require much in the way of treatment - or you can have the kind of flu which can kill you if you don’t have medical intervention (and perhaps even then). You can have, say, a rotator cuff problem which requires nothing more than regular light exercise, or you can have such significant shoulder problems that surgery is required. I think that this is the thing which most people don’t really consider when it comes to mental health, because of the stigma attached to mental “illness”.

And make no mistake - there is still a huge stigma attached to any mental health ‘problem’. While I’ve known for about 25 years that I’ve suffered from this mild bipolar condition, I’ve largely kept that to myself, for this very reason. Attitudes are changing somewhat, but still . . .

One good example that I have seen played out countless times in discussions about religion: atheists see belief in God as essentially irrational, in that there is no demonstrable “proof” that such an entity exists. That’s why religious belief is called “faith”. Yet if you say this, in almost any form or phraseology that I have seen over the decades, people will instantly assume that you’re saying that all believers are “delusional” and basically “insane”. And it’s not just the people of faith who will think this - I’ve seen plenty of atheists jump to the same conclusion.

But that’s silly. There is clearly a difference between types of religious faith, as well as degree, just as there is in the range and severity of mental health ‘problems’. I dare say that most people who don’t really spend a lot of time thinking about it have what can be characterized as only a nominal religiosity - ask them, and they’ll say that they believe that there’s a God, but they don’t really spend a lot of time dwelling on Him/It/Them. Even among the devout there is a wide range of manifestation of religious fervor - the little old lady who goes to her local church every Sunday and prays for relief from her arthritis pain is significantly different from the kook who straps on a bomb and goes off to blow up unbelievers. The couple who pray for the intervention of the Virgin to save the life of their child are different from, say, the guy who taps his bat three times against his left shoe before stepping up to the plate. Et cetera, et cetera.

I’ll be honest - I see all of this as ‘magical thinking’, and not grounded in reality. But it is not all the same. Much of it is harmless, just amusing and not truly toxic either to the believers or to the world. Just as my mild bipolar condition is not the same as severe bipolar disorder, let alone true depression or schizophrenia. I’ll be even more honest - most such ‘magical thinking’ is of very little real concern to me. I see the bulk of it as just adding some richness to society. And I wouldn’t even necessarily say that people should get rid of it. Hell, I can’t say that I really want to be rid of my mild bipolar condition - it is manageable, and there are benefits to it, and I’m used to it. Yeah, sure, in some ideal world I wouldn’t suffer the periodic bouts of mild depression, just as in some ideal world everyone was rational and grounded in reality.

But we don’t live in that ideal world. I’d settle for having a little superstition and magical thinking, acceptance of the fact that we all have our quirks and small problems, in exchange for getting rid of the toxic manifestations of religion as well as true mental illness. How about you?

Jim Downey

(Cross posted to UTI.)

We’re back to the train metaphor. My MIL has either been traveling via train, or is waiting for someone to arrive on a train, or is going to catch a train, or just thinks that she is presently on a train (this last happens when she’s in bed, with the bed safety rails up). I cannot help but think that this is her subconscious’ way of understanding that she is in transition from this life to whatever comes after. Why a train? Because when she was a young woman, that’s how she traveled, to St. Louis for shopping, back and forth to college.

* * * * * * * * * * * * *

But she doesn’t stop there. Yesterday morning I went to get her up from her morning nap, and she asked: “Is there a job or something I can do to earn some money?”

“Money? Why do you need money?”

“Well, to call my mother.”

“???”

“I came over here to play, and have been out playing on the grounds. Now I’d like to go home, so need to call my mother. But I was laying here thinking, and realized I don’t have any money!”

“Ah. Well, that’s OK. You can use the phone here - you don’t need any money.”

* * * * * * * * * * * * *

As I walked with the dog in the cold, stiff wind this morning, little pellets of spitting snow falling around me, I realized something I should have noticed a week or two ago: I’m a bit messed up. Lethargic, unmotivated, finding it difficult to concentrate even enough to write short entries for my blog. But I haven’t been sleeping well, either. I’ve been grumpy and short tempered, impatient and always feeling slightly annoyed. In other words, my mild bipolar condition crept into darkness, a slight depression.

Part of it is just the ongoing effort of being a care-provider, of course. Part of it is seasonal, with the grey clouds that settle in this time of year. And part of it is just personal, as we approach December 12th, the anniversary of my father’s murder. I’ve learned to expect something of a downturn this time of year, but it always seems to catch me off guard at first. You’d think after almost 40 years, it wouldn’t come as a surprise.

It’s not the vicious blackness of a full depression, and for that I am thankful. But still, it needs some tending - awareness, being a little more lenient with myself, a little more indulgent. Try to nap when I can. Worry less about my weight, enjoy some favorite foods in moderation. Work when I can, hope that my clients and readers will understand. Be as gentle with myself as I am with my MIL, at least for a while.

* * * * * * * * * * * * *

I was on-call last night. I first heard my MIL stirring around 1:00, but she settled back down again until a little after 2:00. The second time I got up, dressed, went downstairs to check on her.

I put down the safety rails, helped her sit on the side of the bed. At first touch I knew she was running a fever. I got some slippers on her feet, helped her onto the commode that sits beside the bed. Her eyes were watery, uncertain. Her temperature was 2.5 degrees above normal.

“Here, MIL, you need to take these pills,” I said, dropping her usual nighttime meds into the palm of her hand.

She looked at the pills, then at me, then back at the pills. “No.”

“???”

“I’ve already taken my pills. That woman was in here a few minutes ago, and I took them then.”

“Um, no, no one else has been here tonight. Maybe that was just a dream. These are your pills - you need to take them.”

“No!”

This was a completely new one - she’d never refused to take her meds before. “Um, yeah. You need to take those. Now. Here’s some water . . .”

“NO!”

It took me over 10 minutes of cajoling and commanding and pleading to get her to take the medications. She was adamant that she had taken them already, some memory fragment or bit of dream stuck in her head.

And it was almost two hours before I was able to get back to sleep.

* * * * * * * * * * * * *

She’s been cranky today. Stubborn, demanding, a bit petulant.

But also so very weak and confused. Perhaps another TIA. Or perhaps just another step down in her overall condition.

We’ll know more when the hospice nurse comes tomorrow. Or not. You learn to live with that ambiguity, that uncertainty. As best you can.

Jim Downey

(Cross-posted to dKos.)

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.

Postscript: 

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

They’re mixing with the population
A virus wearing pumps and pearls
Lord help the lonely guys
Hooked by those hungry eyes
Here come Tomorrow’s Girls
Tomorrow’s Girls

Donald Fagan, “Tomorrow’s Girls” from Kamakiriad

* * * * * * * * * * * * *

I can always tell when I’m feeling better, or have gotten a bit of sleep and am able to think (somewhat) again: I get that little rush of energy, mind jumping and drawing connections between ostensibly divergent topics. It is a shadow of the way I feel when my bipolar condition swings to the manic phase, and all things seem clear and possible.

Such is the case this morning.

I read a lot of science blogs. Pharyngula. Cosmic Variance. Phil Plait’s Bad Astronomy. The Angry Toxicologist. But even before he started blogging at The Loom, I was aware of the science reporting of Carl Zimmer. And recently Carl posted a link to his Seed Magazine cover story “The Meaning of Life.” It’s not terribly long, and you should just go read the whole thing.

But among the entire very interesting article is this wonderful idea: that it is a mistake to try and define what life is right now. Philosopher Carol Cleland of NASA’s Institute for Astrobiology is very much in the thick of this, saying that we do not have the necessary perspective. As Zimmer puts it:

Instead of trying to formulate a definition of life, Cleland and Chyba argue, we need to develop a theory of life—an overarching explanation of nature that joins together a myriad of seemingly random phenomena. Biologists have discovered a number of theories–the germ theory of disease and Darwin’s theory of evolution by natural selection, for example—yet they have no full-fledged theory of life itself. The underlying uniformity of life is one of the great discoveries of modern biology, but it’s also an obstacle. It represents only a single data point, and blinds us to the possibilities of “weird life.” We have no idea exactly which features of life as we know it are essential to life as we don’t know it.

A theory of life would allow us to understand what matters to life, what possible forms it can take, and why. It would let us see connections that we might otherwise miss, just as chemists can see the hidden unity between a cloud in the sky and a block of ice. Scientists are already trying to build a theory of life. A number of researchers have been developing a theory in which life is a self-organized system that can be described using the same principles physicists use to describe hurricanes or galaxies. As biologists learn more and more about how the millions of molecules in a cell work together, these theorists can put their ideas to more precise tests.

For Cleland, the most promising way to build a theory of life is to look for alien life. In 2013, the European Space Agency plans to put a rover back on Mars. Called Exomars, it will drill into the Martian crust to seek out signs of life. NASA has plans of its own on the drawing board, including one possible mission that would bring Martian soil back to Earth for intense study. Meanwhile, other promising habitats for life, such as some of the moons of Jupiter and Saturn, beckon. Cleland argues that finding alien life would allow us to start figuring out what is truly universal about life, rather than just generalizing from life as we know it. Only when we have more data, she reasons, will we have a basis for comparison. As it stands now, says Cleland, “we have no grist for the theoretical mill.”

Brilliant. This is not unlike the revolution in perspective which occurred with the transition to a heliocentric model of the solar system. It necessarily moves us from the bias that our version of life is the only possible model. I’ve written about this previously, but it is good to see such a complete treatment of the topic as Zimmer gives it.

* * * * * * * * * * * * *

It looks like scientists have discovered the likely culprit in the collapse of the honey bee populations in the US: a virus.

Virus implicated in bee decline

A virus has emerged as a strong suspect in the hunt for the mystery disease killing off North American honeybees.

Genetic research showed that Israeli Acute Paralysis Virus (IAPV) turned up regularly in hives affected by Colony Collapse Disorder (CCD).

Over the last three years, between 50% and 90% of commercial bee colonies in the US have been affected by CCD.

And from the same source:

Also open is the question of how the virus arrived in the US. One finger of suspicion points to Australia, from where the US began importing honeybees in 2004 - the very year that CCD appeared in US hives.

The researchers found IAPV in Australian bees, and they are now planning to go back through historical US samples to see if the Antipodean imports really were the first carriers.

If they were, the US might consider closing its borders to Australian bees.

The way the researchers determined that a virus was involved is also interesting.  Since the honey bee genome has been ’solved’ (completely mapped), they were able to assay the entire genetic contents of a hive and then remove the known components.  What was left included some bacterial agents which are probably in symbiotic harmony with the bees, and various fungi and other items.  By comparing a healthy hive’s genetic assay with one suffering from CCD, they were able to identify possible culprits - in this case, the IAPV.

* * * * * * * * * * * * *

Communion of Dreams is set in a post-pandemic Earth, where a viral agent was responsible for widespread death and sterility some 40 years prior to the time of the novel. One good model of exactly how that could happen is CCD with the honey bees, though that has occurred in the time since I first wrote the book.

Now, how does this all tie together?  Well, only because the researchers looking into the honey bee problem had the tools of genetic mapping available to them were they able to understand what was (likely) going on.  Something similar happens in Communion on two fronts - resolving the riddle of the orphan girl and understanding the threat of the new virus.  But perhaps more importantly, there is the mystery of the alien artifact and its connection the the superconducting gel, which I describe as “more alive than not” - this gets to the very heart of the issue of understanding the true nature of the universe, and discarding our previous biases.

Oh, and lastly, I’m sure we’ll see something from Zimmer about the IAPV discovery.  Why?  Because one of his specialties is the nightmare-inducing world of parasites, and looking at the evolutionary struggle between hosts and diseases.

Jim Downey

One of the hallmarks of major depression is the energy-sucking nature of the disease. For someone in the throes of such a depression, it becomes almost impossible to even get out of bed, and regular correspondence, routine tasks, et cetera, all slide by the wayside, piling up and contributing to the downward spiral.

I suffer from a mild form of bipolar disorder - what is commonly called manic-depression. The arc of my mental state can be influenced by many things, but typically runs about 18 - 24 months through a full cycle. I have never suffered through a full major depression, but I’ve been down into it far enough to have glimpsed that hell, and know I want no part of it. I’ve learned to cope with my condition, and know full well that if I were ever to slip further I would want professional help to deal with it.

One thing I find in being a care-giver for someone with Alzheimer’s is that as my charge slips further into dementia herself, the toll that it takes on me and my wife comes increasingly to resemble suffering a major depression. Basically, with the prolonged lack of sleep and growing effort to help her comes an increasing difficulty in having the energy to accomplish anything else. Last week I read the new Harry Potter book, and the effort left me completely exhausted and suffering a prolonged migraine by the end of the week. If I can get the focus to spend a few hours at the bench doing book conservation in a given week it is a minor miracle. Just contacting clients or suppliers becomes a task I cannot confront. I’ve promised someone an article on Pat Bahn of TGV Rockets, which I really want to write, but finding the energy to do so is another matter altogether.

And yes, my own mental health is stressed by all of this. I am constantly at risk of falling into the trap that I should be doing more, should be stronger. That’s my image of myself. And when I put my mind to it, I really can accomplish some remarkable things. So the temptation is to push myself further, to goad more work out of myself, to criticize myself for being “weak” for not having the focus or the energy to do this or that. That is a dangerous path.

So, I do what I can, when I can, and try and cut myself some slack the rest of the time. And this afternoon, while my mother-in-law naps, I think I will can some tomatoes. There is more conservation work waiting for me, and other writing I should do. But the tomatoes are ripe and ready, and it will be a nice change from the other tasks.

Jim Downey