54 Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

35 Me, my Body and I: Part 1

I’m quite attached to my body. Frankly, it is a long way from perfect, but I’ve grown fond of it over the years and have become increasingly tolerant of its idyosyncracies and foibles. It’s served me well in lots of ways. One special way it’s done so is by helping to create my two daughters thus ensuring genetic continuity for me and Carolyn. It can’t take a lot of credit for that, Carolyn having done most of the heavy lifting, but still, there were moments of joyful participation in the magical process by which my daughters were conceived and born.

Now, however, my body has decided that it’s getting time to move on. It seems to be quite relentless in this idea. My body has an intelligence of its own, as does all life on the planet. It’s not going to sit still. Life is about change. I’ve pretty much come to grips with dying. I understand it intellectually and am now in the throes of living it. Death is an ultimate form of disengagement from the world for me (I), but in another sense it’s just another form of re-engagement for all the atoms and molecules that make up the complexity of the structures in my body.

For me, as I’ve noted before, we are the stuff of stars. Translating that into language closer to home, it means that the material that makes up my body and all life on the planet has always existed and will always exist as long as the universe is around to sustain it. According to Brian Cox, the universe itself is finite so all bets are off as to what happens to matter and energy in billions of years when the universe itself is worn out and darkly still. For the moment, however, we can say that the universe is the ultimate driver of life on earth and anywhere else it might exist in the cosmos. “Life” here needs to be conceived in very broad terms and not just related to biological organisms. Galaxies can be said to have a life span, mountain ranges and continents too. Nothing is forever. Nothing.

There are two aspects of myself that are of interest to me for this discussion: what happens to my body after death and what happens to my consciousness. These are no longer arid philosophical considerations, they have never been closer to home in a real visceral sense for me, and are mobilizing all of my intelligence and emotional energy.

Without sounding too arrogant, I think I have both of those pretty much figured out after fifty years of study, thought and introspection. As far as my body goes, it’s quite simple, really. I’m a big proponent of simplicity in the search for solutions to life’s problems. That means that I adhere to the philosophical principle called Occam’s razor, or the idea (without being too simplistic) that the simplest solution to a problem is probably the best.

“Antoine Lavoisier described the law of conservation of mass (or the principle of mass/matter conservation) as a fundamental principle of physics in 1789.” That formulation was followed later by the law of the conservation of energy and later still, after Einstein, by the law of the equivalence of mass and energy or the idea that mass can be transformed into energy and vice-versa, but neither can be lost in the process. Bringing this idea down to my level, it is my sense that what makes up my body has always existed and always will, giving me a real sense of connection with all life on the planet and a very real sense of continuity with all life, past and present, including with my ancestors. Put simply, when I die, my body and all of its constituent elements return to the pool of raw materials available for the construction of new forms of life, as I’ve noted before. I can’t emphasize enough the notion of continuity here. In the face of my immanent annihilation, I take solace in the notion of my intimate connection with life in the cosmos and as part of an ongoing process of life. That still leaves me with a problem. What about my consciousness?

I think that my consciousness, when my heart stops beating, will no longer exist in any way, shape or form. Why should it? My consciousness is organically tied to my body and cannot exist without that living connection. Break that connection and the light goes out. So, in anticipation of my death, I may mourn the loss of consciousness above all. That doesn’t mean that I think it has any means or justification for existence beyond the demise of my body. Remember Occam’s Razor. I see no need at all for any supernatural intervention in all of this, something I think is unnecessary given the perfectly plausible and simple scientific explanations available to explain life and its continuity. It seems I’m probably in a minority on this one.

Now, if I were to write a play based on what I’m going through at the moment, I would surely incorporate as a basic plot line the plethora of imaginative constructions (ideologies) that argue that consciousness does not die with the body, but has a life of its own and goes on ‘living’ after the heart stops and all brain activity ceases. I’d have to put my own ideas of continuity up against the age old ideas of the perpetuation of consciousness beyond bodily death. I can envision a Waiting for Godot or My Dinner with Andre type of play. Frankly, I’m perfectly content with the idea that my consciousness will not outlive my body. It’s the simplest and most elegant solution in my mind although it has some serious social implications that I need to explore next. However, in the play I envision, proponents of the immortality of consciousness and/or the soul would need to have their say.

It’s not a huge stretch to go from the perpetuation of consciousness after death to the idea of the soul and its existence independent yet connected to the body and its survival post-death. The ethnographic literature is full of descriptions from ancient cultures about the role of the soul in human life and its immortality. Sociology addresses modern versions of this idea. It seems that for millennia, humans have been loathe to entertain the possibility of total and absolute death and have been, across the board, wedded to the idea of the immortality of the soul even more than they have espoused the existence of God or any other supernatural force. Thousands of religions and their associated churches or societies have come up with often contradictory ideas related to the makeup and activities of the soul and its place in the universe. These contradictions have often been the source of violent confrontations and pogroms, because if my idea of how to get to heaven is the right one, yours has to be wrong and I’ll kill you to show how much more powerful my conception is to yours. These are ideas I need to explore in part 2 of this post.

Stay tuned for part 2 which I’ll release on Sunday, March 8th.

The Azure window collapse and ‘social ills’: a view from a ‘right wing’ website.

I realized  that there is no link here to the original article. Here it is: http://theduran.com/collapse-maltas-azure-window-can-teach-us-social-ills/

This is an interesting article with many Beckerian twists and turns. The basic argument is: Don’t sweat it because you die, we all die, and that’s just the way it is. We don’t need to be sentimental about species extinction or environmental protection.

So, should we be concerned about death, animal suffering, species extinction, climate change, the disappearance of viable forests and any number of other issues as being catastrophic and unacceptable?

I wanted to post this, but I’m not ready yet to comment yet in any detail. Soon. This is such an important moral question.