IPF JOURNEY 04-28-2017 [death by eros]

Looking at death as being a woman came to me the other day when I ran across some pictures of death as a woman. I typically think of the same old image of a man in a robe and hood with a scythe. He is behind or beside some poor bugger in a bed in his last breath. The picture is sentimental and melancholic. [Including a discussion of violent death is avoided here because to do so is justwoman standing skull spoils the whole thing.]  So I found this first image by accident, actually it was in a Pinterest email (creepy, yes?) that “thought” I’d be interested. I was. I thought the theme to be unusual for a painting from whatever period it appeared to be. I was wrong. It is new.

So here stands a woman, in a very classical form, painted by a young Italian named Roberto Ferri whose work harkens back to perhaps the late Renaissance period where people still looked like people even if they were very much idealized.

My weak art history aside, the woman, Death, is not being subjugated by a male. Or raped, or carried off on a stallion, or peed on by cherubs nor even idolized in the center of an enormous shell born unto the realm of the gods.

She ponders, like Hamlet, the mortality of both men and women. Her power seems total but not without an ironic mercy for those at her feet.

Another work by the same artist, while on the same kind of theme is much stronger to me. It feels violent, and unlike our previous classic nude, appears to me to be both the cause of death and the abductor of  life – perhaps the plague, or cancer, or merely age. Her hands are older than her body which I didn’t notice at first. Her right hand’s fingers begin to redden while her left hand cradles the skull in the shadows, red and marked by the signs of age accented with a wart. Whatever Ferri was thinking when he paintedFerrio this I personally like the contrast of old hands and a young body. I’ll leave the rest to your imagination as I continue my quest for images and writings on this most intriguing topic.





IPF JOURNEY 02-22-2017 [Dante’s first circle of hell]

One of the common complaints of this disease is that “I just can’t do things I use to do. I don’t feel like my old self.”

Well, I actually do feel like my old self. I just can’t do some things with this disease, or at least do them as well as i did. But I rarely did “things” anyway. Of course that is not entirely true, as my life has had some interesting moments of which I may share in good time. But adding up the years, I have spent a lot of them sitting at a desk in front of a computer, or sitting back in a comfy chair reading or working on a laptop with the cat. So far then, there is no huge change in my life. I kind of feel an empathy with Edward Snowden living his life in cultural isolation, while, as he stated himself that as far as what he actually “does” it is pretty much the same as what he actually “did” which is sit in front of a computer. I wonder if he surfs.

Holy crap! I have overlooked something important that I need to share. Something I actually “did”. Teaching. The classroom and the students. It was a “physical” exchange. It was a human endeavor. There was diversification to the time spent. And occasionally a student would actually converse with me. Now while I wasn’t a great teacher, I think I taught great things. Yes, I might digress into a state of pontification from time to time, but overall my memories, especially over the more recent years, is good. Quite good. It appears I am not going back to the classroom, although that is not a certainty. But I am kind of there in spirit as I still read and take notes and file them and lose them. I do this almost without purpose.

So then, I suppose I am in limbo.

That would be Dante’s first circle of Hell. Referencing the unusual website of Infernopedia, ( http://dantesinferno.wikia.com/wiki/Limbo ) a site I don’t quite get the purpose of, but it did a good job of explaining things I share the following:

The term “Limbo” derives from the Latin term “limbus” which translates to “edge” or “boundary”. It is believed to be the outermost region of Hell, to which are condemned souls who were not sinful, but lacked the proper faith to enter Paradise. Including classic philosophers, poets, emperor, and such. Godless heathens all.
A soul can only go to either Purgatory or Heaven if the soul finally accepts or believes that there is God. This implies that only in Limbo, a soul will have a chance. In the next circles, souls have to suffer endlessly.”

But there is no real inferno, nor is there any evidence to support a god or a heaven etcetera.

If I may digress for a moment, this reminds me of a book I am reading called “The Worm at the Core” by Sheldon Solomon, which I have mentioned elsewhere. The subtitle is “On the Role of Death in Life”. I am certain you will have no difficulty in appreciating my attraction to the title. So far it is already much more than what I expected in that it focuses on humans’ unique ability among primates to imagine the concept of time. Humans have an “understanding” of the past and can anticipate a future. This ability comes with the unfortunate curse of knowing that one day we will die. From there Solomon shows us how this is mitigated in a number of ways, most importantly by creating “in groups”, often as adversaries to “out groups”. We might think of this as a pathology. Homophobia, male domination of women, inhumane abuse of animals, national pride, the irrational abuse of the environment, and finally religion. The “in group” strengthens itself though symbols such as flags and uniforms, religious iconography, songs and art. Just look around.

Back to questions-magical-clipart-free-question-mark-clip-art-graphics-and-images-clipart-question-mark-300_446limbo, and Dante’s first circle of hell. This is where I presently reside. I live behind a question mark. I mean, how do I make plans? Actually that doesn’t sound all that bad now that I think of it. I wear the same clothes every day: exercise pants, slip on shoes, a t-shirt and a sweater. When a catalogue for men’s closes comes in the mail I don’t bother to open it. Of course, doing the laundry is a breeze. Anyway, no plans. A past and a present with only a vague and grim of anticipation for what lies ahead.

IPF JOURNEY 02-24-2017 [the birds, the rabbits, and the coyotes]

coyote.jpegIt seems that each day I find something, or see something that astonishes me. It is a kind of gentle smack in the face. A recurring “ah ha” moment. That something is life. All kinds of life. I have an arrangement with ants in my home. I see birds outside, some small and colorful, some that defy physics by being able to hover and dart, some large and graceful that soar high above, gliding on a cushion of air.

I also look at various animals. Most frequent is the house cat. There are times it appears to be thinking, and others judging, and others in a zen-like void of peace, and then what it is truly best at, sleeping in a manner that makes you go a bit soft looking at it.

Rabbits frequent the bushes and grasses outside our back door. I am astonished that they survive in the company of hawks and coyotes. But they do. And large turkeys too.

And then there are people. Now this is not something that has come upon me because of my being diagnosed with IPF. I have made these observations and had such ruminations for some time now. 1413925544_gallery-big-3.jpg

I am astonished by life itself it would seem. And that should not be too surprising in that all it takes is a few moments to ask yourself something like “what is life” or “how is it that creatures and plants sustain themselves”? Really, I wonder often such now more than ever – and this is in part due to the IPF thing. Just look at the seemingly infinite levels of complexity of living things from those parts of a creature we can see and touch, all the way down to that which is invisible to the naked eye, and further still to the microcosmic sea on which we all ride upon.

A strange fetish of mine, which is mostly involuntary, is to look at a person, and look at their physical image, and then see that person without their skin. Skinless, moving about, doing whatever, unaware that she or he even has skin, being caught up in the moment. When I have this vision in mind I then wonder a number of things all at once: What are we? Skin and bone? No, much more I know. Why then are we so pathologically obsessed with our outer appearance? It seems that but for minor differences in height, weight, and skin color, we are all just versions of the same thing. Enhancing this image of skinless people all around me are memories of anatomical pictures from science books when very young, and more recently the “Our Body: The Universe Within” show that has traveled the world, and that is just as I was envisioning those people I mentioned before. But instead of skinless corpses in various poses I see real life people this way. This is what I see when looking at, perhaps, you even.

How then are we so eager to judge, even to maim or kill, others because of such superficial differences that amount to little more than might a coat of paint on a house? I know that in terms of the social sciences this seems an almost rhetorical question, as judging and killing others for what they look like is as common as the common cold. Indeed, the analysis of human behavior as individuals, and groups both large and small, is so popular a practice as to have names for the process, such as psychology, sociology, social psychology, psychiatry, even, or especially, political science, eugenics, and so on and so forth. How much of our behavior as individuals or as groups, is determined by our innate physical makeup versus environmental influences, and the endless combinations they thereof can be overwhelming.hummiongbird.jpg

Forgetting all of that for the moment, back to birds and rabbits and coyotes. Without thinking, only looking at such living creatures, creatures of all sorts, from the elephants to planaria, puts me in awe, albeit if for only a brief moment or two. It is a kind of supernatural moment. It is one in which I am not asking for an explanation. It is not spiritual in some religious sense, but more of a sense of not only wonderment but of feeling connected. Such an experience is brief, but the ensuing pondering and thinking and even puzzlement it causes can go on for some time.

But due to events of the past four decades or so, I now feel like I am looking upon the last of these creatures, doomed to destruction by bulldozers, oil pipelines, toxic waste in our waters, radiation from power plant accidents and seemingly weekly oil spills. Even the entire earth, Gaya, quakes from fracking and becomes further sterile from surface mining, nuclear weapon’s testing, and other means of exploitation and plundering by humans.

It is an odd feeling. It is not as much sadness, as one of loss.



IPF JOURNEY 02-11-2017 [what matters in the end]

It is not even 11 am yet. House cleaner is working. Spanish speaking (no English to speak of) small brown woman. It is always the same. Imagine the Vulcans landing on Earth for the first time. Probably the most obvious thing they would see in the global social structure is that brown people do all the work and white people have all the fun. Of course this would be a cursory glance, but actually because of that, invaluable. We do get a bit bogged down with nuance and forget the proverbial “forest”.

Time and Space:
It seems that whatever I am doing, or use to do anyway, always felt like it was the wrong thing and that I should be doing that “other thing.” Reading student’s papers, I should be paying bills. Writing something for the class, I should be grading. Updating the syllabus? Need to read that stuff from the local union. I “should” really finish that book I started… And so it goes.

Interestingly I never bothered to research the concept. It might, after all, be a known and even treatable syndrome. Man, a little late now. Anyway, a non-academic Google search failed just now, instead coming up with mostly  how to be efficient (not a bad idea, but again a bit late) and how not to multi-task .

On the day-to-day for today thing, coughing kind of up and down. Best not to move. I joke that I only cough when I move, breathe, or talk. Not a joke. Dr. S. is throwing another med at me. It is a psychotropic first and a chronic cough thing way last on list of applications. Not very interested. But should try anyway. Hope the side effects don’t kill me. – What am I saying!


I have continued reading, quite slowly, Gawande’s book titled “Being Mortal: Medicine and What Matters in the End”, 51GzTLFuAML.jpgand it is digging deeper into how our endings tend to play out and he compares in a pretty broad sense the difference between a prolonged struggle in and out (sometimes only in) a hospital, and  getting cut and probed and drugged and such, versus the calmness of the hospice and the “human” care you receive. This really sticks with me. Dr. S. totally freaked out last week when I asked her PA about a little “I’m done now” kit mentioned somewhere in my readings. She called me directly at home and was very, very upset and wanted me to avoid such thinking, at least for now. Shit, she is wrong. But professionals rarely listen to the lay person. And that is another thing that Gawande talks about. Cool.

Jesus, I am running on. Maybe you should quit here even if I go on some more. Take a break. I would but have NOTHING else to do, but maybe pay a couple of bills. Listening to Janacek string quartets and wondering why I have been avoiding this recording for4717_1a344877f11195aaf947ccfe48ee9c89.jpg the past four years. Well, it probably became too familiar and I really don’t like things being that familiar. That is why most of the classics are just out for me.

—-UPDATE!——– Breaking News  ———-
Dr. S’s PA emailed me that I got approved for OFEV. What the hell is that? Well, in the simplest terms it is a cancer treatment that is also used for IPF. Side effects are bad, bad, bad. Bad all over. Even possible liver damage. Nausea and direahaa  etc. This is JUST what I have been reading about for Christ’s sake! Or my sake. So this would be on top of a list of pills that, well, is already pretty large. Are “they” going to make me sick to make me un-sick? I mean, well, you get it. Treat one discomfort by creating another. I am not happy right now.

——UPDATE 2 ———-
New nurse. Really sharp. Knows her meds and seems to very up on IPF as well. Was a bit concerned about my med regime from Dr. S. She did not know why I was not on a steroid. Very concerned that this cough has lasted so long.





IPF JOURNEY 12-25-2016 [Feeling good in spite of Christmas and thoughts of loneliness]

It is Christmas day. Well, what of it? Going to see Nephew, his wife and dog, and his mother. Now that is OK. Will drag some O2 bottles and maybe the concentrator.

But that is not what I wanted to talk about.

I feel pretty GOOD! Really. The past two weeks or so I have improved a lot. I can move around. Now recall that it wasn’t that long ago that I could not get from the bedroom to the bathroom, all of ten feet, without getting a coughing fit and having to sit down. It was back then that a shower was hellish as I would run out of breath and (cough, cough) have to sit for more than a few minutes to get my Os back up.

I recall the first couple of times taking a walk with the physical therapy woman and it was all slow and wobbly and uncertain and the like.

Well, I’ll take now over then for certain.

BIRDS: The rear of the apartment behind the kitchen is a room that exits to the back yard, so to speak. S put some bird feeders out there and there are now ten or more birds at a time flitting around. Several different species, and I forget them at the moment, but they seem to mostly get along although kind of in flights of the same kind. Groupings sort of. Like people, but without guns.

And of course, looking at all of that I then think about all the dying species on the planet because of a relatively small group of plunderers grabbing the last drops of oil and the last puffs of natural gas for money they don’t need. dead_crow_by_crillustration-d4ltx0pAnd I think of all those politicians, you know the ones, who help these criminals do their deeds. It is amazing. The arctic is melting and warming at an alarming rate which is going to fuck up the weather for much, if not all, of the globe. And those guys, including the lunatic and his gang of thugs in the White House, yell out that climate change is a hoax. And about half the voting population of this country is fine with that, even if they have no idea what anyone is talking about. And so on and so forth.

Remember me talking about doing a study on loneliness? Nope? I see that I haven’t talked about it yet after all. A month or so back I ran across a BBC video on loneliness and it piqued my interest. There wasn’t much data or science in the film, but the interviews and a smidgen of statistics were good enough for me at the time. Well, I put some notes into a file and soon forgot about it. I would occasionally think about it and lament to myself that I have very little interest in, well, anything right now. Or right then. But I do. And feeling so much better of late I had the luck to run across a Maria Popovich article in her “Brain Pickings” blog by Hanna Arendt (whom I have recently been reading about  –  I forget why. And then there is a book I am purusing called “The Extraordinary Rise and Surprising Appeal of Living Alone”. The first pages are, predictable with and introduction full of quotes by famous dead people from Aristotle on. And they are all about how we are social creatures. And that is were I am right now. The point is, things are kind of coming together.

Optional thoughts on being alone follow:

My intuitive sense is, and has been, that mostly, and I mean REALLY mostly, we need to be among others of our species. Sociology supports this in a myriad of ways. Durkheim’s notion of Anomie, and Marx’s of Alienation are my two favorite references. There is also Tonnies and his notions of Gemeinschaft and Gesellschaft (community and society). All seem to believe that Western society was headed for serious trouble with the advent of industrialization and the end of the small farming communities.

Regardless, the being alone thing, from my own experience, is that less stuff gets done, what does is without outside evaluation so remains in a fog, drinking from boredom is very, very easy, my thinking is dull and I crave stimulation. That and developing a habit of talking to myself, which does not do well when I am in a social setting make for a strange brew.

So, roughly, my hypothesis is that with the industrial revolution began the atomization of people. I mostly think of Marx regarding this. Marx spoke of “alienation”. Alienation from one’s work (factories), from other people (the loss of social commonalities), and the alienation from one’s self. Well, good so far. Leaning on Marx is sort of OK again since the last financial disaster of 2008. But while he seems to be the best historical and economic basis for predicting how things have turned out, Durkheim saw how people lost their social cohesiveness from such social upheavals.

But to continue again towards the present, as the industrial age (which Rifkin refers to as the age of oil) evolves into what is called “modernity” we see a new emphasis upon material acquisition, that is, having lots of things. One of the stories goes that it was from the automobile industry, per the influence of a Robert Lowe, that having a new model car every year generated consumer interest in buying new cars. Apply this to virtually everything. Bang, we are on our way. Now, in America particularly, something else happened that I don’t think that our two dead heroes imagined: suburbia and homeownership. This is post WWII of course and America, white America anyway, was drunk on having stuff, and yards, and cars, and funny looking clocks on the wall and all the rest.

But even without the catalyst of suburbia and the freeway and the loss of public transportation to individual car ownership, people were drifting apart. Even families were breaking up as it became “normal” for the children to eventually leave the home to go create their own home and family, and often at great distances away from their parents. And as I think that, back to those three dead heroes, Marx, Durkheim and Tonnies,  I believe that it is indeed due to the breakup of social systems previously dependent upon cooperation and now obsessed with specialization, individuality, status and the mad desire for wealth that we see the resultant atomization of humans, at least in America.

Thus, the ultimate outcome: Loneliness. Isolation. Disassociation. Fear. Mistrust of others. And so on and so forth.


Painting by Jan Matejko, 1862

While there is a good deal of effort to push things in the opposite direction, understandably on a micro scale, I see the majority of America and some other countries, perhaps Japan being one of them, really just fucking lonely.

I really think I am losing interest in this topic.

IPF JOURNEY 12-20-2016 [two entries – number one and number two]

Here are two entries from the same day. Both have been edited much later than their original writing. Lucky you. The first one, directly following these remarks, is the bummer one. It is political too. It is a polemic if you will. It is not about IPF. But I can’t help it sometimes. So, if you don’t like this kind of thing, skip to the second one called “the nicer one”. It is a little bit nicer. I stress, “a bit”.

Polar bears. Friggin’ polar bears again. In a news story online. I didn’t need to read the article. Anybody who doesn’t know what is happening to the polar bears must be a Republican. Because every civilized person in the developed world does, of that I am quite sure. So I was off on my sorrow for life on the planet jag again. I think of the birds especially, as they are magic the way they travel so deftly in that super thin medium we Polar-Bear-Icecall air. All the birds. It is especially interesting comparing the hummingbird to all the rest. It is simply amazing. What the heck is that all about? Oh yeah, my favorite misused term, “intelligent design.” Conservatives/evangelicals coined it as a means of worming creationism into textbooks. The “other” view. One is based in science, and the other in magic. So then, if creationism should be taught in school, then so should the Flying Spaghetti Monster.  Indeed, all the religions are all based on magic. (Zen is not a religion. Zen Buddhism is however. I think. But that’s not the point. I like the term “intelligent design” but do not think of it as some kind of single being that is intelligent and designs stuff. If that were the case said designer left a lot to be desired. Maybe humanity is just a Beta test. But I think of the “intelligent” part as a process. Maybe an algorithm. The intelligent part is simply that it works and the more we uncover as to how it works the more sense it makes. The “whole” might be considered as intelligent just as we consider our brains to be. Or ourselves to be. Hell, you gotta admit, nice try here.

More on polar bears. I have a hard time with the notion that people who know that things like fossil fuels are killing the planet continue to do so and even thwart efforts to find better solutions for our energy need, even in spite of actually KNOWING that they are better. Of course I am thinking of Exxon Mobile who withheld information years ago that they knew what was happening to the climate but didn’t care to share that information. But worse, in a way, are those who really know, but don’t want to, so use the “hoax” thing to brush it all off. Republicans again. To remain a member of the Republican party is to endorse the Republican party and all the horrible and inhumane bits of legislation it supports.

NOTE: A bunch of political stuff cut here. Too much for even me.  

Still thinking about those polar bears. Polar bears?  The frequently used photograph of the bear on a small chunk of ice detached from the mainland and certain to die a slow death is a grabber every time. It really shakes me up. So do pictures of dead elephants with bloody stumps where their tusks were. Why don’t I feel that way about people? Or do I? We all get soft and gushy when we see a sick kid. And we see pictures of sick kids in Syria as often enough. I don’t get the animal thing so will skip it for now. It is kind of embarrassing. Or shameful. It even seems contrary to humans having survived this long.  Some weird shit eh?

JOURNAL 12-20-2016 the nicer one

I wrote quite a bit for the journal today. But it was a tirade on a particular political party and on religion. I’ll leave it for Steven Colbert and John Oliver. I have few enough friends as it is.

Stocked up on O2 today. Had delivered enough E-Tanks to equal 24 plus one really big boy good for about 30 hours. [Note: I now have a standing order for 36 due to travel needs.] It is an M22-tank. (Really? 30 hours?) It is a backup for power failure. The assembled tanks look like military ordnance. It is weird.Lotsa Tanks

A down day. Forgot to go outside. Did not exercise. Some of that ol’ time depression. Not quite feeling it head-to-toe yet. Maybe later. Maybe not. If you have ever had some kick-ass clinical depression you know what I mean about it being all through your body, not just in your head. You can feel it. Creepy.

This journal thing is starting to wear on me. I feel foolish writing this stuff down as if someone might read it. What good would it do anybody? Does it do anything for me? I don’t know. I don’t know.

As mentioned earlier regarding my problem with hating TV, in spite of that I have continued watching two series. One is “The Man in the High Castle”. I don’t know if they can keep it going for a third season, but the story (PK Dick) is terrific and suspenseful and so, and sooooo appropriate for the moment. Imagine WWII with the Nazis and Japan winning and splitting up ownership of America and, oh, no spoilers. The other is “The Americans” which recaps the 80s under Reagan and his insane ideas about an anti-missile defense shield and strange weapons like “tiny pebbles” designed to act like a shotgun scattering pellets at an incoming warhead and fucking it up somehow. lostinspaceNever happened. None of it ever happened. Some people made a lot of money though. Hey, believe this: The genesis of all of that was suggested by the likes of Edward Teller, but weirder still were science fiction writers Jerry Pournelle and Larry. No kidding. My favorite documentary maker, Adam Curtis, notes this in one of his films for the BBC called “Pandora’s Box”. The show is painfully slow at times but is great at contrasting Soviet and American interests, American materialism, spoiled children and on and so forth.


IPF JOURNAL 12-17-2016 [oxygen is a gas. really]

Another of those tired days. I think it is from not moving around enough. I am, and in part allow myself, to be stuck in the house. But the idea of walking through a Target or a grocery store with a large E-Tank repulses me.Yeah, I see gray haired codgers like me, but mostly a bit older, cruising the stores in an electric cart. I’ve been there before, in the cart I mean, with other health issues. The oxygen thing for some reason feels worse to me.

Reading a book about Hannah Arendt, which was triggered by a Facebook post by Sherry’s brother. A very interesting person. Arendt that is. I need to read some of her stuff now. Yeah, sure, like I’m reading a lot these days. News and more news is about news is all I have been reading. It’s not the same thing. Lazy reading. But of course, these days, the news is pretty compelling stuff. breaking-news-01Addicting. I can’t not take a peek, and then another hour is shot mostly reading stuff I already read earlier.

Hey, did I ever explain the cannula? Regardless, a bit more anyway. I keep wanting to spell it cannella, which is a type of tree in Florida. Or I’ll spell it canella, which I guess means nothing. I thought there was an Italian pastry in the mix. Guess I was wrong. It is bugging me though. [Later: found it. The pastry is called a cannoli. Ha! Vindicated.]

So this cannula thing is in my nose all the time. From it a four or five foot tube is attached to some sort of oxygen supply. That might be an E-Tank on wheels. Or it might be connected to a portable oxygen condenser on wheels – or maybe the really small ones you can carry with a shoulder strap. Also  there is the really small tank that can be on a strap. It fits in the grocery cart kid carrier. I’ve used all of these now except for the small condenser which won’t work for me. Its output is not sufficient to my needs, which is 4 liters per minute. I’d give you even more details but it is boring.

But I will say that you can connect the five foot tube to a fifty foot tube. Which we did. For weeks we tripped on that thing and it got tangled and snagged on stuff, THEN we found out you can get a 25 foot one. The supplier never thought to share that information. THEN we found out that there is a swivel connector that reduces the looping and tangling. They didn’t tell us that either. They just want to drop by and leave or pick up a piece of equipment and get the hell out. Service. “They”, if you are curious, is the oxyge100px-Better_Business_Bureau.svgn supply company Apria. Do a Google search with the phrase “complaints against Apria”. Never mind, I did it for you. Here is the Better Business Bureau scoring:

“Apria Healthcare has received 1.02 out of 5 stars based on 117 Customer Reviews and a BBB Rating of F.”

OK, enough whining for now.

I lied earlier. The cough is back. Bugging me quite a bit. Can’t have a phone conversation. Now I spent a lot of time with the first pulmonologist trying to solve the cough problem to allow me to the work on expanding my lung capacity. But sincet the dry cough is a typical symptom of IPF, says to me that it ain’t going anywhere.

Cough, cough, cough, and so forth.