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IPF JOURNEY INTRODUCTION 10-12-2016

This is a series of reflections over time by a guy who during the summer of 2016, at age 67, on vacation, found out he has idiopathic fibrosis, or, IPF. That’s me. A very simple definition of the disease is that it is one that produces scaring (fibrosis) of the lungs (pulmonary) which has no known single cause or cure (idiopathic). You can find more detail elsewhere.

I need to share my experience in some manner, even as I continue to discover its menacing secrets. So you are invited to read along.

As a warning, this is not a day-to-day recording of the progression of my disease or its treatment. It is a recording of me on a sort of day-to-day basis.

Eric Panama Hat small cropped
Me trying to look cool before putting oxygen tubes in my nose.

It is more about the person inside. If you want the outside stuff, or a more technical approach there is a lot out there. Imagine that I am a being who has recently been placed into a kind of petri dish. There is stuff growing and changing all about me but I remain at the center.

I do enjoy a conversation so feel free to post something if so motivated.
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IPF JOURNEY 05-03-2017 [Life itself is a disease with a very poor prognosis…]

“Life itself is a disease with a very poor prognosis, it lingers on for years and invariably ends with death ”  ~Carl Jung

Carl Jung use to look like this near the end of his own “prognosis”: jung-11

One wonders if guys like him were ever happy. I don’t get the sense that happiness was ever on their agenda. Look at all the great Western philosophers and show me how many were happy. I don’t think I am happy either. I don’t even seem to want to be. So there it is.

This morning follows the previous day, but the previous day is not really over yet.

PROCEDURE:BRAVO, or Bravo, or Bravo 48 hr Ph monitoring. Along with an upper endoscopy, the bravo procedure was done to me yesterday whey most people were having lunch. A small Ph monitoring transmitter, a bit larger than a Tylenol capsule is attached to the esophagus to register Ph activity due to reflux and the like. It looks like this:

Bravo-Capsule-Size-ComparisonIt can be for a 48 or 96 hour recording period. Mine is 48, thank you. A small receiver and recorder, about the size of an old fashioned pager is kept at all times with the patient within three feet during the recording period. Imagine this: before this miniature technology a small wire ran up the esophagus out of the patient’s mouth to the reorder. You can find a picture of an unhappy looking middle-aged man looking straight at you with this wire coming out of the corner of his mouth. So I have very little to complain about all things said. The results of this test is all important to qualifying for getting on the lung transplant list. Obviously they aren’t going to plug some new lungs on to a broken pipe. I’m OK  with that. Good plumbing is good plumbing.

The recorder I am using looks like this:

pic-bravo-monitoring-systemThere are better ones. Good luck and all.

More importantly is that I got that Jung quote from listening to an Alan Watts recording which kind of popped up in front of me on Youtube while I was doing something else of which I can’t remember any more. Watts was speaking on the topic “Why Proper Discipline is Important” which I thought ironic enough to just let play on while I did other things. But I ended up doing his thing, more or less.

Discipline is a dirty word, he says, at least in our usual usage, and he chooses to replace it with “skill” which, face it, does sound much more appealing. After some comparisons to children having to learn to play the piano etc., he gets to the point of the spiritual journey, and how LSD became so popular among the young people of the 60s and 70s, but also how such unprepared tripping misses the mark regarding really gaining anything substantial – whatever that is.He is referring to the spiritual quest of the youth (WASP) of the period. There is clearly more to discuss on this topic, but what I liked was that one might make this “trip” and come back and say “wow, that was far out” or something or other, but really have little tangible to show for it. He states that “It is the immemorial wisdom that everyone who takes the heroic journey must bring something back,” in order to prove it. Maybe. Good thing to think about.

I think about LSD in particular a lot and have read some on the topic and watched some videos on Youtube. The early work by the likes of Aldous Huxley, and even Bill Wilson (known for his part in creating AA) with of course Alan Watts and a few other familiar names, Tim Leary perhaps the most obvious if not the most constructive, are fascinating.

Why does LSD fascinate me? It is because it offers the experience of connectivity. Connectivity is the common thread I found among my readings and viewings. This refers to the successful “trips” which had some manner of safety controls in place. I had one crummy and fairly paranoid trip mostly by myself under the covers of my bed when I was sixteen or so. I never tried it again. I do not regret having not actually taken it, so much as not having “experienced” it. I feel the same way about the Vietnam war. I certainly do not wish to have participated in it, but long for the genuine kind of “knowing” of it that only those where were there can truly have.

 

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

Looking at death as 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 04-18-2017 [she waits in the air]

Death: 11/1997
DEATH – [I guess I wrote this.]
11/30/97

hope-iiDeath, come sleep with me
but do not spend the night
it is early yet, there is still promise
we might yet find the time
to know each other a little better

Come sleep with me
but do not think you can stay
no it is not for you to impose yourself
not yet, not yet
the moon you see, is still full

But come closer, don’t be shy
after having come all this way
why not hold my hand
I’ll stroke your cheek
we can whisper to each other secret things

Yes, that’s it, you’ve got it now
lie there, be a friend
I won’t hurt you, don’t be afraid
no, I don’t mean to tease you
I know, I know

All right then, you may go
perhaps it just isn’t the right time
you know, to stay
maybe tomorrow, yes possibly
I’ll be here you know, as always, for you

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IPF JOURNEY 04-13-2017 [I just don’t feel sick enough (yet)]

When I was diagnosed with IPF around August 2016, I of course immediately Googled around and looked at worst-case-scenarios and soon after was ready to order an urn for my ashes that very week. Really. I found a pretty cool one too.

IMG_2868
That yellow thing is a mushroom. Neat, eh?

I had, of course, jumped the gun by years. Understandably, though, I was a bit excitable at the time.

I had biopsy surgery around November 2016. It was a big deal with lots of tubes and wires and such. I got a lot of attention from nurses though. That part was OK.

Recovery was pretty horrible. Being a guy that is pretty hard on himself in life, careless if you will, I have been under the knife a few times. But never have I experienced such a horrible recovery as this one – not even after a double bypass. No, not this time. I was coughing all the time and often coughing up large amounts of mucous , making horrible noises and occasionally vomiting as well. Not a pretty picture, sorry. This sent on for a couple of weeks if I recall correctly.

But of the last few months, in spite of having to drag around a large oxygen tank when I go out, I feel pretty good. Well, periodic episodes of fatigue have been occurring. I thought it was just laziness. I don’t think so now. Actually I read another IPFer’s post somewhere that referred to this feeling as a malaise. Good word.

In spite of that, I am driving around with a disabled parking plaque and the oxygen tank and making a few visits out of the house, and doing a bit of writing and, once in a while, vacuuming the living room. We even have a housekeeper come in a few times a month. Well la de da, ain’t we living fanciful now?

So yeah, I feel like I should feel worse considering the parking permit and sitting around a lot and all. Watching documentaries and reading all manner of stuff, and scribbling thoughts down here and there and saving articles without any reason to any more. So, and don’t tell anybody, I actually feel kind of guilty. You know, “guilt – the gift that keeps on giving”. I don’t know if people experience that feeling any more. Psychologists refer to the notion of shame, but that is a bit overboard in my case. Shame is longer lasting. Maybe lasting a lifetime. Guilt can just be something to mess you up in the short haul, even if over and over and over.

Anyway, what am I thinking? That I would feel better if I felt worse? It is vaguely like having all your symptoms of some frightening ailment completely disappear on the day you finally get to see your doctor. Try to untangle that one if you can.

Maybe feeling too good right now is OK then. I mean, things could be very different tomorrow couldn’t they?

 

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.
danteinfernoninecircles
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.

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IPF JOURNEY 02-14-2017 [Happy Valentines Day, and don’t forget to take your meds]

ofev-cropped-small
Ofev (nintedanib)

It was a good week all in all. Last week that is. I was off the Ofev (150 Mg) and after three days the diarrhea was gone. I could plan the day a bit then. I felt quite good, was actually into exercises, began eating and mostly enjoying it, and returned to reading and a bit of writing.

That may all be over now. We shall see. Today I began taking Ofev again, but at a reduced dosage of 100 Mg. I think I may have mentioned that it is designed to slow the progressions of the fibrosis, but does not cure it.)  I took a pill at around seven a.m. and now, just shy of two hours later, I feel a familiar strangeness in my body. It is most pronounced in my face of all things. A kind of headache in my eyes and also a something, not a tingling per se, but a “presence” through my body. I am just a little dizzy. Well, shit. Here we go again.

I am reminded of Howard Becker, sociologist, who had done his dissertation on jazz musicians smoking marijuana. Smart guy. I believe this would have been in the 1960s. A significant finding of his, which I find less and less tenable over time, is that one is actually taught to enjoy marijuana.

howard-becker
Howard Becker

Specifically, a novice smokes some while a more experienced user coaches or facilitates him or her in that the strange feelings such as a dizziness, dry mouth, hunger, slowed time and a “buzzing” throughout the body is a good thing, otherwise it might be considered as unpleasant. Well now… I do recall one instance in my teens that, although  a single case, supports this. I recall being in a car with my buddies. It was during high school. We, a couple of experienced marijuana users, including  myself, although perhaps less so, introduced a mutual friend to the drug. Yes, in a car. Yes, during high school. And maybe, perhaps, already being followed around by the “narcs”. That is true. Consider now that this would have been 1966 or 1967 in San Jose CA, the soon to become the prime city of an emerging Silicon Valley. But that doesn’t matter. So this kid takes a toke or two and soon starts talking loudly about how it isn’t doing anything. His eyes are wide and a bit strange. He was, in the parlance of the drug world, “fucked up”. Yep. But we had to explain to him that what was happening to him was a good thing and to roll with it. We thought it very, very funny of course, that he didn’t know he was stoned. It was a scene out of a movie, but one of several that had not yet been made. That would be a decade or two later. Regardless, that scene always came to mind when explaining Howard Becker’s theory of deviance to my classes, and how it is not the  act of deviance that is of importance, but rather how a society comes to label it as so.

Where was I? Oh yes, these odd feelings throughout my body unfortunately do not feel pleasant in the least. Of this I feel a bit cheated, although it appears to be the norm for such medications. Other than the likes of Diazepam and pain killers I have not heard of anyone enjoying medicinal side effects. Alas.

So what is there of any philosophical importance to this entry? Well, via a phone conversation with a person who I think can now be considered a friend, he brought up the notion of how when people are reminded of death, their behavior tends towards fear, resentment, and resistance and hostility to other groups. The name of social psychologist, Sheldon Solomon Solomon,

came up so later I knocked around the internet a bit and found a one hour lecture by him on Youtube that works pretty well as a summation of this idea.

It was based on his book The Worm at the Core, which is basically on the how we perceive death and how such perceptions exist as cultural phenomena. Or something like that. When nobody’s around I’ll probably watch it again.

I did begin another documentary on death called “The Denial of Death” claiming to be based on the work of Ernest Becker (yes, a different Becker from the one mentioned earlier) who devoted a lifetime exploring the topic. The film was a bust however and I quit watching it. I was a mix of interviews and a travel log. It lacked the intellectual zeal of the previous one.

So my quest continues. I need to go a bit further than simply playing over and over ,as well as reading, the works of Alan Watts. Although I wouldn’t be at all surprised if after all is said and done, I  ended up there after all.

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