I’m dying?

Funny, but I don’t feel like a dying man, nor am I eager to find out what that’s like. No matter what the medical experts think, I don’t feel as though I’m dying. 

All the indicators are there: I’m dying. I’m old and I have myeloma. Myeloma is incurable and I’ve probably had it for at least a decade, but I was only diagnosed with it in the fall of 2019. At that point I already had lytic lesions (caused by myeloma) in my femurs, especially my right femur. I suffered through chemotherapy for almost three years before abandoning that course of action in September, 2022. Now, I’m palliative. That means that I have a medical team that aims to reduce my pain to tolerable levels. As soon as they hear ‘palliative’ many people immediately assume end-of-life, but the two don’t necessarily equate. I’m still mobile. I just had my driver’s licence renewed (although I rarely drive), I’m getting back into drawing and watercolour. I’m writing, obviously. I’m not bedridden. 

We are all so different. Myeloma is especially idiosyncratic. In fact, there are several types of myeloma affecting individuals in various ways. One of the distinct problems with oncology today in an outback like British Columbia is that there are few resources that are dedicated to dealing with cancer. It can look like there are lots of resources, but there aren’t really when it comes to dealing with diseases like myeloma and its treatments. If you check out the BC Cancer Agency’s (BCCA) website, you’ll learn that almost 30,000 new cases of cancer were reported in 2019, the year I was diagnosed. It would take an inordinate amount of money and other resources to deal with that number of new cases, let alone the number of people already identified with cancer in the years before 2019. The numbers are staggering. The challenge daunting. 

When I was diagnosed in 2019 I was put on a standard chemotherapy protocol. That didn’t work. It caused a rash around my midsection that was incredibly itchy. Considering the failure of the first protocol, I was put on another protocol, this time with three drugs. Anyway, over the next few months, the protocol failures outnumbered the successes so that, eventually, just a couple of months ago I quit chemo altogether. There may have been another drug I could have potentially used, but it would have required very close, ongoing, and individualized care. An oncologist at BCCA told me that they just didn’t have the resources to deal with that kind of individualized need, that is, for me. So, here I am, palliative. 

I want to write about Jim Carr for a paragraph or two. He was a Canadian Federal Minister of International Trade Diversification elected in Winnipeg, Manitoba, first in 2015, then again in 2019 at which time he was diagnosed with multiple myeloma. He was in his late 60s at the time and received a stem cell transplant and dialysis along with chemotherapy. He died on December 12th, 2022. He gave his last speech to the House of Commons on December 6th. I can’t be certain about this, but it may be that Carr had a form of myeloma that specifically attacks the kidneys. His early treatment with dialysis indicates to me that his kidneys were failing, probably the thing that ultimately led to his death. So, was it myeloma or kidney failure that killed him? I have no information about any of his symptoms. I only have what was reported in the news. Still, a few things come to mind about his case. The news reports indicate that he was diagnosed in the fall of 2019, just as I was. It appears the chemo treatments didn’t work for him any more than they worked for me. In fact, I strongly suspect that had I not had any chemotherapy I’d be no worse off for it now. Chemotherapy must not have worked for Carr either otherwise he would have shown more positive results and lived longer. 

The fact that Carr was up and about giving a speech to the House of Commons on December 6th and died on the 12thindicates to me* that kidney failure ultimately precipitated his death. The oncologist we spoke with at the BC Cancer Agency after I had decided to quit chemotherapy insisted that I would not likely die precipitously but would experience a slow degeneration of my health over a period of months if not years. The fact is that people die of myeloma for a number of reasons and over various periods of time between diagnosis and death. As I’ve noted before, myeloma is notoriously difficult to diagnose so people like me might have myeloma for years before being officially diagnosed. That might have been the case for Jim Carr too. For all I know he might have been one of those people who doesn’t easily talk about how he feels and would want to ‘tough it out’. 

One observation around the news reports of Carr’s myeloma diagnosis is that Carr could fight this.  Of course, people want to say ‘the right thing’, at times like this. Commentators from Trudeau to Joly to any number of politicians, federal and provincial stated things like: Carr has been “a leader in many fights, and this one is another one [he] will win.”** Well, no, he could not win the fight, nor can any of us. Besides, it’s not a fight. Myeloma is incurable. It can be treated to some extent, but even in the face of all the positive talk from the oncology community, nobody walks away from myeloma alive, and ultimately, no one walks away from life alive. 

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*a rank medical outsider to be sure but a keen observer nonetheless of my own illness and that of others.

**https://www.ctvnews.ca/politics/trade-minister-jim-carr-diagnosed-with-cancer-says-spirits-are-high-1.4655348

How Long Does He Have?

I don’t know, but I wonder if anyone has asked any of my family or friends that question about me. It’s a common question in movies or on television ‘medical’ dramas. Of course, it’s virtually impossible to answer that question unless the circumstances have been set up ahead of time to determine the time of anyone’s death. In most circumstances we just don’t know. In some we do. Maybe you have a gun and are about to shoot a hapless victim. In that circumstance, you would precisely know the day and time of your victim’s death. Somebody on death row in the U.S. would know when they were scheduled to die, but with all the appeals possible, some death row denizens have been there for sixteen years and more. Still, eventually appeals run out and off you go to the abattoir. Or you might get up in Toronto some dreary Monday morning expecting to spend the day dispensing cash and stamping statements as a teller in a bank downtown, only to be stabbed to death leaving a subway train at your usual stop.  

You might have come across the same story I did about the young woman (31) stabbed to death in the subway in Toronto on December 9that around 2 PM. I have no idea if she was a bank teller, that’s my invention, but it would be possible. The fact that she was stabbed at 2 PM is significant. There are many reasons why she would be out and about midday. Her killer, 52-year-old Neng Jia Jin, required a Mandarin translator for his court appearance and was given a list of people he was not to contact even though he was held in custody. He killed the victim, Vanessa Kurpiewska, randomly. Who expects to get up in the morning, get dressed, maybe make plans for the holidays, have a coffee, go off to work, take an afternoon break to do a little shopping, and end up dead on a subway train? On the same day the CBC reported a deadly shooting in Mississauga and every day the papers are happy to report on any number of random shootings and stabbings across the country and in the US. Regular, typical, unspectacular deaths generally appear under the radar, in the obituaries, not on the front pages. 

So, a significant number of people die randomly every day from any number of causes, some endemic, some violent, and all unpredictable. It may happen that I get surprised by my death, or at least by my dying. Probably not, but it’s not in the realm of the impossible. My palliative care team can track the deteriorations in my body, some of which are clear signs of impending death. Kidney failure is a sure sign of imminent death. When I came close to dying a month or so ago after my last chemo treatment, it was because my kidney was shutting down. That’s an indicator of major bodily shutdown. I remember clearly in the ER at the time that the docs asked us what we wanted to do if my kidney did shut down. We made it clear to them that no heroics were to be used to keep me alive. Palliative care doctors are really attuned to changes in the functions of major organs. I’m fortunate in that I have a strong heart and no indication of any cardio-vascular issues. 

We (Carolyn and I) drove to Campbell River last week to see an orthopaedic surgeon about the lytic lesion in my right femur. The palliative care docs flagged it as a potential major issue because it seemed to be growing. The orthopaedic surgeon, Deke Botsford, concluded that the changes that had occurred over the past few months in my femur would not likely cause a pathological break, that is one that would happen with no provocation (a fall, for instance). Anyway, we decided that I would get an X-ray in a month or so and that we would have another chat at that time. Fair enough. No problem for now.

I’m reading a book that was kindly given to me by a very thoughtful neighbour. It’s called: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix (2018). I’m almost finished it. Mannix is a physician and a Cognitive Behaviour Therapist (CBT). Her approach to death and dying is psychological and biological. My approach you will realize, if you’ve followed this blog at all, leans much more to the cultural, social, and anthropological side of things. Of course, I also inject lots of personal anecdotes and experiences. That’s where Mannix and I cross paths. Her book is a compendium of stories about the end-of-life experiences of a whole range of people of all ages in Britain. My blog is a mix of things, but it leans heavily on my experiences in hospitals, with medications, and with medical staff. Denial, for Mannix, refers to how individuals come to accept or reject the fact of their imminent death. For me, following Becker and others, denial is considered primarily a cultural phenomenon which rubs off on every one of us via religious or magical traditions and practices that we rely upon to convince us that we are immortal. Our traditions, practices, and protocols act as collective reinforcement of our beliefs in our immortality. Émile Durkheim, the first French sociologist and education theorist, wrote about the importance of what he called collective effervescence as an important structural component of social coherence. 

I guess if I have any institutional or cultural connections with denial mechanisms, they would be associated with science, especially physics and chemistry. If I have any belief about what happens to my body after I die, it’s that all the atoms and molecules that make up my body will return to the biosphere, to be taken up by organisms in their process of growth. My consciousness will evaporate to nothingness.  So, it goes. 

This Blog

November 30, 2022 (8:35 AM)

If you’ve been following this blog since the Fall of 2019, you will know that I was diagnosed with cancer (multiple myeloma) at that time and that ever since I’ve dedicated the blog to exploring my relationship with ‘my’ cancer and its treatment. Lately, I’ve been compiling my blog posts into a Word file. Word tells me that I now have close to 150,000 words in that file. I’m sure I have double that in the blog since I started publishing it in 2012, the year I retired from teaching at North Island College. That’s a lot of verbal regurgitation. 

It’s been a ride. 

Looking back over the years it’s obvious how much of a rollercoaster ride it’s been. The thing is the rollercoaster has two primary seats and a number of others that can also be involved. Of course, I’m in the lead seat. If I didn’t have myeloma there would be no rollercoaster, but since I do have myeloma, any rollercoaster rides I’m on also involve my family. Carolyn is my wife but also my primary caregiver. It has not been easy for her. My daughters who both live in Vancouver have made every effort to support Carolyn and I on our ride. They have come here which is highly disruptive of their lives, never a word of complaint. One of my brothers and one of my sisters who live on the Lower Mainland have come to visit and help out. I have a sister who lives in Nanaimo. She and her daughter, Janice, come as often as they can and bring meals for us to relieve some of the caregiving burden from Carolyn. We are very fortunate also in that we have fantastic, generous, kind, and supportive neighbours. 

I can only go by my own experience but living with myeloma for anyone (and its treatments) means that some days we feel fine (more or less) and other days we feel crappy. Not long ago, after my last disastrous treatment and hospital stay, I spoke with my oncologist at the BCCA in Victoria. I was determined to stop all treatment, chemotherapy, and radiation, which I did. It seemed that I would always get a high fever and some form of infection following treatment. Last month I wrote about how my last chemo treatment almost killed me. Of course, stopping all treatment has its consequences.

As I noted in a previous post, the upshot of ceasing treatments means that I now have to face myeloma head on without the help (or hindrance) of treatment. I am now considered palliative, meaning that any treatment I get now aims to deal with pain alone. So, tomorrow late afternoon I go to the hospital for a CT scan of my right femur. The palliative care doctors want to know what the state of that femur is to better decide on what to do about it. They may recommend surgery. When we know more, we’ll decide what to do. I’m not sure what to think at this point. 

December 1, 2022 (8:00 AM)

It’s probably the coldest day of the year here today at -5˚C. Snow is deep in the yard and we’re expecting more today and tonight. It’s quite bright out now but that can change quickly, just like how I feel. 

Yesterday I introduced the role of caregiver. Caregivers, family, volunteers, or paid members of palliative care organizations are essential for people who are sick or somehow disabled and who can’t always look after themselves, who can’t cook, feed themselves, do laundry, wash dishes, etcetera. Caregiving is tough, one of the toughest jobs around. Imagine going to work not knowing what will be expected of you when you get there. Never mind all the bum wiping and other physically related work that is expected of you. Some of us who need care are quite large and heavy. Caregivers risk injury to themselves as they care for their charges.

For some caregivers who provide in-home care the issue is mental illness or dementia. Imagine going to work and immediately getting verbally assaulted and insulted by the person you’ve come to help. It can be the same in the hospital. While I was there, I often heard caregivers, nurses, and aides, get yelled at and abused in a number of ways by patients. Or the issue can be that the patient may have had a stroke or are otherwise incapable of communicating verbally. Professional caregivers are normally prepared for all exigencies and requirements of the work, but there are certainly times when the work gets overwhelming and tiring.  There are several resources available through government and non-profit organizations that can help caregivers. I list some of the more obvious ones here along with their web links. This Island Health website contains a lot of links to other resources. I don’t feel the need to replicate all of them here. A principal non-profit is the Family Caregivers of British Columbia. It is funded by Island Health, United Way, and the Province of British Columbia. 

December 2, 2022 (12:20 PM)

There is a weather warning posted online by Environment Canada for our region indicating that there might be up to a 15 cm dump of snow today. So far, the snow has been light but it’s picking up now. I’m still expecting to go to the hospital for a CT scan at 5:15 PM, but we’ll see. We haven’t heard from the hospital yet. We’ll see. 

December 3, 2022 (10:00 AM)

Heavy snow out there. It snowed a lot last night. I did go to the hospital for a CT scan. It was snowing hard, but David did a stellar job driving the car, which is great in the snow. The hospital seemed deserted, but that’s an illusion, of course. The wards are full of people behind closed doors, and I’m sure the emerg was busy, but the reception was empty, suitable for bowling.  

December 4th, 2022 (9:22 AM)

So, I wrote on December 1st that it was the coldest day of the year. Well, today is even colder at -6˚C. It matters not to me, not in the slightest. I sit here in my recliner, nice and toasty. I can look out to the beautiful scene outside, but from the comfort of my living room. Works for me. I have good meds and it seems that I’ve been able to figure out how best to take them to minimize pain.

I’m still old and I’m still dying, but at least I have a lot of people supporting me. So many people die alone, violently, and/or in excruciating pain. I’m going to try very hard not to be one of those people. I aim to die peacefully with some good meds to deal with any pain issues I may have. When my ma was dying, the nurses came frequently to give her a shot of morphine. That seems like a good way to go although my mother wouldn’t have been able to tell you one way or another. From her bodily movements I don’t think that she was in a deep state of peace. She was agitated at times. It was almost like watching someone in REM sleep having involuntary limb movements. 

One of the generous neighbours I mentioned above gave me a book to read. Carolyn just finished reading it and found it delightful. Now, I’ll read it. It’s entitled: With the End in Mind: Dying, Death, and Wisdom in an Age of Denial. It was published in 2018. The author, Kathryn Mannix, is a British palliative care physician. As you can tell from the title, this book is right up my alley. It’s not an academic book, so no references. You won’t be reading any quotes from Ernest Becker* in its pages, but Becker is everywhere in the book as the scholarly backdrop to a book like this. 

I’ll leave this post for now. It’s long enough and I need to get on with reading Mannix so that I can discuss her book in my next post. If you are so inclined and you want to read a little scholarly background material for a book like Mannix’s, check out the first couple of dozen posts in this blog, the ones specifically about Becker and The Denial of Death

Bye for now.

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*This is the first in a series of posts on Becker’s and related work. I published it in 2014: https://rogerjgalbert.com/2014/01/28/ernest-becker-1-of-mouths-digestive-tracts-and-anuses/.

Memory Works With A Little Effort

I’m not sure if you’ll be able to access this Atlantic article or not, so I’ll just summarize it a bit for you. It’s about memory or remembering and whether you remember events in the past from the first or third person perspective. I would expand the argument to include imagined events in the future.

When you remember a past event, say one that was particularly notable, do you remember it as you initially experienced it, or do you see yourself in it as a character, almost as an actor, in a play?

I’ll die soon. Soon is an indeterminate word, mind you. I’ve already commented in previous posts about the fact that I’ve not done all that well with chemotherapy. It seems that I’m probably a high-risk cancer patient in any case. I’ve been subjected to a number of different chemotherapy protocols. Now, according to the oncologist at the BC Cancer Centre in Victoria in charge of my case, I’m running out of options. At the moment I’m on a two-month trial with a drug called carfilzomib (trade name Kyprolis). So far, I’m entirely underwhelmed by its effectiveness. The next month will tell the tale. I’m not very hopeful given my recent bloodwork and my reactions to the chemo drugs. But, I haven’t completely abandoned hope. I may still get to live a few more months.

Recently I had a bit of a discussion with the family about MAID (Medical Assistance in Dying). It’s not something I need to consider immediately but eventually it will become an option, particularly when the levels of pain and immobility outweigh quality of life issues for me. I see no need to lie in bed in pain awaiting more or less imminent and sure death when there is the option of assisted suicide. I’ve tried to imagine my dying moments. I can do that from the third person perspective, but definitely not from the first person perspective although I know what it feels like to go under general anaesthetic. I imagine MAID as like going under general anaesthesia but never waking up again. I see myself lying on a gurney with a doctor setting up the meds and then injecting me first with morphine or something like that before administering the killer drug. I can imagine that. I can remember in the first person going into the Hospital to have my kidney removed in 2002. Now that I try, I can also see those events in the third person. Strange.

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It’s amazing how many incidents and events I can recall if I put a little effort into it. I have seventy-five years of them to capture. Lots of fodder for remembering. I could write a book, although there is a lot that I would not share with you or anybody, private things.

This post is about me as I age from 1949 or so until now. My life isn’t over yet, but I’m getting close to a complete lifetime. I can track my parents’ lives, at least as far as major events go. My father was born in New Brunswick (1911), my mother in Alberta in 1924. They both died at the Dufferin Lodge in Coquitlam, my father in April, 2007 and my mother in January, 2018. Noting their dates of birth and death means nothing, of course. They are merely life’s parentheses. It’s what transpired between those dates that makes a life. The same goes for me, and you. Photographs tell a bit of the story, but in a static kind of way.

In the first picture, I’m standing there with my sister Denise. She was born in 1943, four years before me, to a mother who subsequently died in 1945 giving birth to what would have been her first son. Denise died on December 13th, 2004 of cancer. I’m not sure where this picture was taken. It looks like it could be in Sapperton, not far from the Royal Columbian Hospital. I would welcome correction on this from anyone in the family. By the time this picture was taken the family lived at 634 Alderson Avenue in Maillardille (Coquitlam).

In this picture I look to be maybe two years old. Denise would have been six. I am endowed with a natural Mohawk hair do. I still have it. I don’t remember anything of what was happening when this picture was taken. I was way too young. The photograph does nothing to jog my memory.

Denise and I always had an interesting relationship. She was pretty tough and I was mouthy. She threw a knife at me at the dinner table when I was probably a pre-teen. She missed, but it was close. That was memorable and I see it in the third person. But during my late, listless, teenage years, after returning from College St-Jean and not knowing up from down, I lived with her and her then husband, Roy, for six months or so, and often looked after the kids (which they had adopted). They had a fairly large home in Vancouver, off of 41st. The basement was made out to look like a TiKi lounge. Strange now, but not so for the times.

I worked with my father at a couple of re-manufacturing plants in Surrey and Langley. But I also worked at a planer mill in Fort Langley. I got drunk on occasion with some of the guys from work. It’s amazing we didn’t kill ourselves on the way home from work. One of the guys drove a convertible and that’s what we came home in most of the time. Mom and Dad had to know but they never said anything.

From the time I left College St-Jean until I enrolled in courses at Douglas College in New Westminster in 1970 or so, I worked at a number of odd jobs, mostly in the lumber or related industries. For a few months I worked at a plywood plant on Braid Street in New Westminster. I remember the smells and sounds of that place the most, but I also remember (in the first person) the work I did, piling pieces of veneer in bins in preparation for pressing them into plywood. The last job I had before going to Douglas College was at a sawmill in Marpole. I worked there for maybe six hours total. I recall being required to ‘clean up the chain’ of massive timbers. I did that for a bit but then I slipped and had one of the timbers fall on me as I fell off the platform. I could barely walk after that so I dragged myself to the first aid shack. Nobody there. So I struggled to my car (an Austin Healey Sprite) and drove myself to the hospital. I had back surgery then. Dr. Hill (I recall his name to this day) removed a disc in my lower back. Worker’s Compensation (now Worksafe BC) paid for everything including my first year of studies at Douglas College. There was never an inquiry as to what happened at the mill and as to why there was nobody in the first aid shack when I went there for help. Workers Compensation just paid for everything, no questions asked.

I find the series of photographs here helpful in some way in jogging my memory. The early ones don’t help at all but the later ones do. The one I posted of me doing my Knowledge Network tele course is still available to me as a video so I can go back and see myself over and over again if I so choose. I have many more photos too, but I’m not going to post all of them here.

All I wanted to do here is give the flavour of my life as I grew up, then grew down. We all have individual experiences of life. I often think of the many thousands of people who have died in conflict over the centuries, their lives often cut short by machetes, as in Rwanda in 1994. I suppose if a long life is a good thing, then I’ve had a good life.

Look at the forehead on that kid!
Me, maybe two years old
Me, five or six

Me in 1959 setting off for College St. Jean
Me at sixteen or so
Me doing television – late 1980s, early 90s.
Me not long ago

Chemo and life

July 27th, 2022.

It has been about twenty hours since my second infusion of carfilzomib. I take dexamethasone in conjunction with my infusion and that’s what I’m feeling the effects of predominantly at the moment. I’m dexed out, and I will be for a while yet. What concerns me the most is a repetition of the fever I got last Thursday as a side effect of carfilzomib. That fever at 38.9˚C sent me to Emerg for a long day on Thursday. The irony is that the fever is not caused by an infection, but that’s what the staff in Emerg will focus on. That’s what they know. And, of course, they do have to discount the possibility of an infection so they prescribe high doses of antibiotics. I don’t need antibiotics, but there ya go.

This time around, if I get a fever tomorrow AM (it started at 4 AM last week) I’ll know what to do about it. If my fever stays below 39˚C or so, I’ll stay at home, take a cold shower, use cold compresses and wait for it to pass. Last week the fever lasted maybe a day, and it fluctuated a lot during that time. It was funny in a way, because we went to Emerg for a second time last week on Thursday evening because my temperature had gone up to 38.9˚C. By the time we got there it had dropped to 36.6˚C. Well, that was a bit embarrassing. At that point they took some blood and put me in a room to then ignore me for 4 hours. By midnight we had had enough waiting and just went home. I don’t blame the Emerg staff. They couldn’t do anything in any case. But it would have been good to just send us home even if we hadn’t seen a doctor yet.

In any case, I’m a little apprehensive about the next 24 hours. I really need this chemo regime to work so I need to deal with the side effects and not let them force a stop to the regime. Carfilzomib is one of the last possibilities for me apparently. After that, I’m on my own. That means facing my myeloma without any help from chemotherapy. The consequences of that are well, terminal. We all get there, but I was kinda hoping to see my 80th birthday. That’s not rational, of course, because whether I die today or in 4 years makes little difference. After I’m dead, there won’t be any regrets. So, my hopes and wishes for a longer life are purely emotional.

August 3rd, 2022

So, as of now I’ve completed the first cycle of carfilzomib/dexamethasone treatment. No fevers after the first infusion. That’s great. The thing is I need this protocol to work. I won’t know if it’s working until I get my next blood workup in a couple of weeks. I meet with my local GP oncologist on August 10th, but we won’t have the results of my blood tests by then. We will meet, though, so he can assess how I’m doing. Blood work is only one factor in making decisions about treatment, but it’s an important one.

As usual, I’m dexed out after my last infusion of carfilzomib and 12 milligrams of dexamethasone taken orally. The next forty-eight hours will tell the tale regarding other side effects. I’m feeling alright given the circumstances. Strangely enough I have more energy when I’m dexed out, at least until it wears off and at that point I need to lie down and maybe get a little sleep.

I’m currently reading a book by Tom Robbins entitled Jitterbug Perfume. It hit the New York Times Bestsellers List in 1985. I read most of Robbins’ books back then along with books by John Irving and Kurt Vonnegut. Ostensibly about coming up with the definitive perfume, the book is all about the fear of death, immortality and dying. I can’t seem to get away from reading (and writing) about death and dying. That’s not surprising, really, given my time of life. Strangely, I feel I need to apologize for being so focussed on death and dying. After all, death, according to Ernest Becker, is one of the twin pillars of evil in our world, the other pillar being disease. It seems I’m immersed in the twin pillars of evil. So be it. It’s my life right now. Chemo is my life too at the moment. It’s a tough row to hoe sometimes because the end is nigh. But, it seems that we need to always focus on the bright side of life. Talk of death and dying are not welcome in a world that vociferously denies death and dying.

I know too many people right now with cancer, some with cancers much more aggressive than mine. Some want to talk about it, some don’t. Some have died recently, some are still dealing with their disease. Whatever type of cancer we have, we all face the same end. The ‘authorities’ claim that my cancer, multiple myeloma, is incurable, but treatable. Fair enough. However, the treatment can be quite harsh and whether or not it’s worth it is a question we still need to confront. That’s the case for all types of cancer.

As the song says, it’s summer time…and the living is easy. Yeah, right. For all you joung’uns with not a care in the world, you need to take this maxim and run with it. I’m not in a position to run anywhere. That’s fine. We’re all at different stages of life. Have a great summer.

Evolutionary Theory vs. Structural-Functionalism.

[Don’t be too put off by the title of this post. It looks highfalutin. It may be, but the text isn’t.]

It’s a truism to say that our lives are finite and that we go through stages of development and change. But, it seems, sometimes we need to be reminded of obvious but possibly unwelcome realities. I’m sure we all understand that we follow a path of change starting at birth and ending at death. In between we move from infancy to childhood, to adolescence, to adulthood, and then to old age. Of course, not all of us get to go through every stage. For some of us, the stages get cut off and we die young or accidentally. We may contract a disease at any age that proves fatal. Governments document all of these things with vital statistics and publish all kinds of data on birth rates, types of mortality, morbidity*, et cetera. British Columbia offers a lot of this information online. Statistics Canada also gets into the act and publishes a lot of health related statistics. It’s not an exaggeration to note that we are obsessed with our health and wellness. How much of the internet is dedicated to health related websites? The woo flows freely and the sales of every magic potion, miracle diet, and supplement imaginable are on offer. And there is overwhelming evidence that at every turn we find ways to deny death. As I’ve often noted, one of Ernest Becker’s most salient observations is that the twin pillars of evil in our world are death and disease.

Our entire medical system is set up to discover and ‘fix’ any human organism that doesn’t conform to what we consider normal for any stage of development. It is often unsuccessful in that endeavour, but it doesn’t like to discuss its failures.

Pathology as I use it here describes a condition of abnormality (non-normality), a structural and functional situation wherein things have gone wrong in an organism. The underlying assumption of pathology is that organisms all have a normal condition, and if things cease to work as they are supposed to according to medical science, then they are considered pathological, or at least the cause of their malfunction is searched out and an attempt is made to restore the organism to normality. Medicine, and in fact, our whole culture, decided a long time ago what normal humans should look like and how they should behave. Yes, we all live and die, but pathology isn’t really interested in those realities. A pathological perspective is only interested in bringing a diseased organism back to normality.

Science and medicine have analyzed and dissected the human body in great detail especially over the past five hundred years. Leonardo da Vinci, born in 1452 was adept at dissection, and he led the way for countless others who carried on the tradition. Later, biologists analyzed the human body from many perspectives, broadly using anatomy and physiology as major categories, but focusing on systems (cardio-vascular, endocrine, etc.), organs, cells, and their functioning. I’m no biologist so I won’t pretend to understand the intricacies of the investigation of human biological life. However, it’s clear that our organs (heart, liver, kidneys, et cetera) are of great interest to medicine, particularly if and when they cease to function the way they are supposed to.

As a quick aside, a major sociological school used (and still uses) what Emile Durkheim calls the organismic analogy. He suggests that society is much like the human body. He argues in his dissertation Rules of Sociological Method that there is no organic equivalence between human organs and social systems, but broadly, they share the same epistemological underpinnings. Human organs work in concert for the good and survival of the whole. That’s easy enough to understand. He then argues that human social systems, politics, family, economy, education, et cetera, must work in concert for the good of the whole society. Social pathology occurs when any one or other of the social systems that make up society fail to fulfill their function. The result is that the whole society is ‘sick’ or malfunctions. The problem with this perspective is that it’s not especially easy to find ‘a society’. From my point of view, societies are not be confused with countries or nation-states. They are not necessarily equivalent.

It’s easier to identify an individual human being than a society, or so it seems, until we ask the question: Is an individual human being a stand-alone organism? My answer is no. I could not and would not exist without air, food, water, et cetera. These elements are not necessarily a part of me, but they are essential for my life so excluding them from an analysis of what I am as a human is highly misleading. It suggests that we are somehow separate from the world that surrounds and sustains us. This is a foundational part of the individualism that characterizes our capitalistic world and it’s wrong.

So, broadly, we are captured by a world view that focusses on the structure and function of our organs in a biological sense and our social structures in a societal sense. This is why people often argue that what’s ‘wrong’ with our society is that the family isn’t doing its job, the economy is failing us, education is behind the times, and other simplistic criticisms. Figuring out how to fix it is another thing entirely.

In terms of the human body, if medicine finds that the heart is weak or not working properly, it tries to ‘fix’ it, that is to restore it to its presumed former state. It may conclude that a weak heart will have deleterious effects on the kidneys, and it may even find that a weak heart will threaten the organism as a whole. In contrast, an evolutionary perspective expects the heart to weaken as it ages. It expects that lungs will lose their ability to process oxygen. It expects that over time, muscles weaken, no matter what you do to counteract it. It expects death because death is built right into the model, unlike functionalism whereby death is left unconsidered or considered a clinical failure.

It’s true that an evolutionary perspective has made substantial inroads in science and even in medicine. It hasn’t in sociology, although it’s coming along**.

An evolutionary perspective follows the logic I present in my recent post: LIFE vs My Little Life. From this perspective, birth and death are normal human events. Death, especially, is not considered a defeat, it being an essential part of life. No death, no life. It’s as simple as that. That doesn’t mean we have to be happy about it. Just the amount of effort the human species has spent on denying death, on convincing itself that death is not the end of life, is testament to how unhappy we are with death and dying.

I don’t want to die, but I don’t have a say in the matter either.

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*morbidity refers to the incidence of ill-health in a population.

**see my (slightly outdated) dissertation on the topic published on this blog.

#78 LIFE vs My Little Life

[I posted this in February, 2021. I’m re-posting because I think it expresses how I’m feeling right now about life and death. I will follow up with another commentary in a couple of days if all goes well.]

LIFE in capital letters is life writ large. It governs all manifestations of individual life. It goes on merrily as individuals live and die generation after generation. Ironically LIFE needs death to make more life. After all, we eat dead things, don’t we? Of course all plants and animals follow the same pattern. They come and go, often by being consumed by other living things. It’s almost March and the property here is getting ready to burst into life after the long period of die-off and dormancy that is winter. Flowers are appearing even with freezing temperatures.

The early ones are aconites, snow drops, early crocuses, and maybe violets. They express life briefly then give way to the grasses, the ferns and the flowers of spring. The pear, apple, plum and cherry trees will soon display their flowers in preparation for the fruit that will follow as long as the pollinators do their thing. The birds are into mating season and we’ll soon have baby robins, finches, nuthatches, flickers, thrushes, jays, hummingbirds, and chickadees hassling their parents, fluttering their wings and demanding food.

The sun is shining right now. It wasn’t supposed to according to the weather forecasters, but there ya go. Living and dying under the sun. That’s what’s going on. My adult life has been informed by the scholarship of life and death, that is, of life and death as considered by philosophers and scientists. The thought of my own dying hasn’t occupied very much of my time except when my mother, father, and sister Denise died, and then only briefly. Being diagnosed with multiple myeloma, a cancer that is incurable but treatable, changed all of that. Myeloma kind of sets the stage for end-of-life considerations. There’s no escaping myeloma’s trajectory. It will kill me eventually if I don’t die of something else first. Now, I have a hard time not thinking about my dying.

For most of my teaching career I used Ernest Becker’s work (The Denial of Death, Escape From Evil) to discuss the role of the fear of death on our cultural institutions. The fear of death and the promise of immortality and their overriding presence in institutions such as patriarchy and misogyny have shaped our social relations and created the conditions necessary for human contest and eventually homicide on a grand scale and war.*Related to our fear of death is our propensity to cut deals with deities. Humans have invented thousands of gods (and related semi-gods or supernatural entities) over the millennia. We assign responsibility to those deities for natural disasters, crop success or failure, floods, earthquakes, volcanoes, and the like. We even put faith in God for winning a football game or a war. We barter with the gods. We make sacrifices. We tell the gods: “Look, we are sacrificing this young woman for you by throwing her into this volcano, now you must reciprocate by ensuring our crops grow well next year.” A life bartered for more life. That’s largely the story of countless religious (and political) invocations over the millennia. Priests and politicians constantly urge us to make sacrifices so that the future will be better.

Modern medicine is an elaborate institution for the denial of death. It’s all about ‘saving’ lives, and it’s willing to go to extreme measures to accomplish that goal. Of course, ‘saving’ a life means little more than postponing a death. Obviously, I’m personally invested in modern medicine and pharmacology. I’m hoping that chemotherapy and radiation treatments will buy me time, effectively giving me more life and postponing my death. Chemotherapy and radiation treatments are not cheap. Just one of the drugs I’m taking will cost over $100,000. One of the pharmacists at the pharmacy in Victoria that dispenses the drugs I use told me over the phone recently that they have some million dollar patients out there, patients that have used these drugs for many years. I attend the Cancer Care Centre at the local hospital and I’m impressed by the technology and the expertise of the many staff nurses and doctors that work in that facility. That can’t be cheap either.

Modern medicine will go to great lengths and expense to treat patients hoping to extend their lives. It must do so otherwise it fails in its sacred mission to safeguard life and battle death, the ultimate enemy. As Becker notes, in our culture death and disease are the twin pillars of evil. Disease prevents us from enjoying the pleasures of life while death cuts them off summarily.

So, we are willing to invest a great deal to save an individual life yet we are also willing to gleefully pile corpses in great heaps during war or in the context of ethnic cleansing, that vile excuse for murder, rape, and pillage as in Rwanda, 1994, or in any countless examples of such celebrated mass murders. We gladly kill for US, for our people because THEY(the enemy) are obviously responsible for our misfortune and distress. If we eliminate THEM our problems will be solved. That is the big lie. As Becker notes, we need a THEM with whom to enter into contests to show our prowess and to show our God (gods) how powerful and deserving of eternal life we are. Why do we spend so much time, energy, and money on organized sport? Sports reflect our constant need to show how deserving we are of life and more life. We win, we go to heaven. The gods are obviously on our side. We lose and we face shame and rejection. This analysis can easily be applied to American politics now too.

I’m rambling now. I guess I’m trying to avoid writing about the finitude of my life, my little life. In the face of LIFE and its overarching grip on the process of life and death, my little life doesn’t amount to much…but it’s all I’ve got really. Maybe I can celebrate my insignificance. Maybe I can celebrate the entirety of my life from beginning to end. In a way end is as necessary as beginning in the scheme of things. Let’s see what I can do with the little bit of life I have left.

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*The need for an opponent or an enemy (THEY) is based on our need to prove our worthiness in competition for the good things in life and for eternal life. The winner takes all! Very early on in human history, tribes split in two called moieties so that there would be contestants to beat proving the prowess of the winners and their qualifications for immortality.

Slowly Falling Apart

For this post, I decided to create a collage of quotes and commentaries from books I’ve been reading lately. They range from comments on death and dying to philosophy, culture, and the future. So far in this blog, I’ve refrained from commenting on American Congressional politics, but I just may go there soon. I told my sociology students year after year throughout my college teaching career that the American empire would fall, as all empires fall, not from external conquest but from implosion due to unresolved, long standing conflict. The American empire, specifically, will fall because of commodity production that depends on longer and more complex supply chains and failing profits. America is falling on its own sword of profits. Supply chains and economic processing zones in a plethora of ‘developing’ parts of the world have been an issue for decades while only recently making it onto mainstream media commentary and news. I’ll explain in a future post.

US politics has to wait. It’s a mess down there but it’s a mess everywhere on the planet at the moment. Let’s move on.

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Robert Sapolsky is one of my all-time favourite guys. He has a number of his Stanford University lectures on YouTube. He’s a neuroscientist who specializes in stress. He worked in the field for many years with Olive baboons in Africa. I have a video in which his work with the baboons is featured. On the topic of the human condition he writes:

“we are now living well enough and long enough to slowly fall apart. The diseases that plague us now are ones of slow accumulation of damage—heart disease, cancer, cerebrovascular disorders.” (from “Why Zebras Don’t Get Ulcers: The Acclaimed Guide to Stress, Stress-Related Diseases, and Coping (Third Edition)” by Robert M. Sapolsky)

Now, ain’t that the truth! If you check out Stats Canada’s vital statistics you’ll find out that cancer is the leading cause of death in Canada. Actually, life is the leading cause of death everywhere, but as far as the observable evidence of bodily decay and death goes, cancer is determined to be the immediate major causes. Writing this makes me want to go back and binge watch Sapolsky on YouTube. Not only does he have a lot to say, but he says it in such an engaging way that binge watching is entirely feasible. I’ll be sharing more from Sapolsky later, but now on to another very different writer.

This is a quote from another book I’m reading that I want to share with you. Talk about falling apart! Robinson is a contemporary novelist writing in the sci-fi genre with dystopian tinges. He writes:

“Say the order of your time feels unjust and unsustainable and yet massively entrenched, but also falling apart before your eyes. The obvious contradictions in this list might yet still describe the feeling of your time quite accurately, if we are not mistaken. Or put it this way; it feels that way to us. But a little contemplation of history will reveal that this feeling too will not last for long. Unless of course the feeling of things falling apart is itself massively entrenched, to the point of being the eternal or eternally recurrent individual human’s reaction to history. Which may just mean the reinscription of the biological onto the historical, for we are all definitely always falling apart, and not massively entrenched in anything at all. 31 India” (from “The Ministry for the Future: A Novel” by Kim Stanley Robinson)

Most of this quote will be difficult for you to fathom because it’s out of context. It’s the last sentence that really matters. To help you out a little with the context of this quote, the ‘order of your time’, in the first sentence means that in the course of your life you feel out of control. You can’t go back, you can’t stay still. You can only go forward towards your death. This applies not only to us as biological entities but also to our cultural and social constructs which also are bound to come and go in a generally disorderly way. We cannot be ‘massively entrenched’ in life because daily existence makes a lie of any attempt to avoid moving toward death.

Now, more from Robinson in another of his sci-fi novels set far from Earth on a ship and a moon.

“Existential nausea comes from feeling trapped. It is an affect state resulting from the feeling that the future has only bad options. Of course every human faces the fact of individual death, and therefore existential nausea must be to a certain extent a universal experience, and something that must be dealt with by one mental strategy or another. Most people appear to learn to ignore it, as if it were some low chronic pain that has to be endured. Here in this meeting, it began to become clear, for many of those present, that extinction lay at the end of all their possible paths. This was not the same as individual death, but was instead something both more abstract and more profound.” (from “Aurora” by Kim Stanley Robinson)

Robinson is not a great writer in terms of composition, but he is a very perceptive commentator on the human condition. His novels are all about the fragility of humanity in the face of evolution and death, both on an individual and social level. Death denial is a consistent theme in human history and as a goal, has engendered a mass of immortality tales with “supernatural” characters as diverse as Zeus, Jesus, Shiva and a mess of lesser gods. These characters are our heroes who will save us from death if only we believe in them. But then we come face to face with evolution and biology which care not a wit whether we believe in them or not, and which just carry on.

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So, what about falling apart?

It’s clear that average death rates have risen consistently over the decades on the planet although in the US they’ve been falling for some demographics. Falling or not, on average we live well into our seventies. In fact, Stats Can tells me that if I live to be seventy-four I can expect to live another fourteen years. These are average life expectancies, of course. Millenia ago, living to thirty-seven years of age was considered average. People died of things then we seldom die of these days (such as appendicitis).

Sapolsky understands that the longer we live the more things can go wrong in our bodies. That’s self-evident the longer we live. If we get injured while young we can expect to heal and then just get on with things. As we (I) get older the healing process slows down.

There are a few very fortunate people, especially in the world’s richest parts, who suffer very little as they get old. I don’t think I know any of those people (well, maybe one or two). That said, there is an inevitable decline in capacity as we age. That doesn’t mean we should stop living and simply prepare for death because we know it’s going to happen. For me, I have much reduced capacity. At seventy-four I have maybe a quarter of the capacity I had at fifty. But a quarter is better than nothing. I still have shit to do! I’m falling apart, yes. In fact, I can’t fall much farther, but that’s fine, I still have a way to go.

And the beat goes on…

Yes, it does. Sonny and Cher knew what they were singing about what seems like a lifetime ago now. I don’t know why, but the fact that Sonny died slammed up against a tree on a ski slope in Lake Tahoe the day after my birthday (January 5th) 1998 has my current attention. I guess it’s because his is a good example of a quick, unpredictable, death. Sonny had no time to sweat it. Death just happened to Sonny. No time to ruminate about it. Go Sonny go! I must confess that in some ways I envy Sonny his quick release.

Moving on, in my last post I told you that there was no longer any trace of multiple myeloma in my blood. I’m happy about that, but I must attach a disclaimer to that fact. The multiple myeloma will return. As I’ve repeated over and over, multiple myeloma is incurable although it is treatable. My oncologists have suggested to me that myeloma is a lot like type 2 diabetes in the way that it is treated by the medical profession. 

So, I can reasonably expect to make it to my eightieth birthday, although, frankly, longevity is not the holy grail here. And, of course, the six years from now until my eightieth year are not years owed to me. They are purely hypothetical time, years I might live, and years I might not. Moreover, as far as I know, after I’m dead, I won’t be able to regret anything about my life, how I lived it and for how long. “I” will not be so it’s ridiculous to speculate on what “I” might do after “I” am no longer. After I’m dead, “I” enter my immortality stage. 

I was not going to explore the whole business of mortality in this post, but I changed my mind. Bear with me. I just want to introduce here some ideas that I’ll come back to it in an upcoming post. These are not simple concepts to grasp, but, if you make the effort, it may help you understand life and death as I see them. So, here we go:

Humans are mortal, but only as long as we’re alive. To be blunt about it, it’s only when we are alive that we can die. Once we die, we are no longer mortal, we now become immortal, that is, we no longer change, and we consist only of what others remember of us. Our lives are complete. Simply put, immortal means not mortal. Well, once we’re dead, we are no longer mortal, by definition. We’ve arrived! We’ve become immortal! That doesn’t mean that we will live on forever in some form or other as defined by most of the religions that exist on this planet. No. “We” exist, after our deaths, only in the minds of others. 

My definition of immortality is clearly not the one espoused by most religions. The Abrahamic religions, for example, get around the problem of death by coming up with the idea of the soul. According to Christianity, the soul is the immortal aspect of human existence and is continuous before and after death. The body may return to the planetary store of compounds, atoms, and molecules, but the soul, well, the soul lives on in some kind of ill-defined relationship with a deity, “God” in the case of Christianity.  My definition of immortality does not acknowledge the bicameral nature of the person as consisting of body and soul. I see no evidence for the existence of a soul. Therefore, it does not ‘fit’ into any explanatory scheme I concoct. 

I could go on and on about death and dying as most of you well know, and as I promised I’ll get back to it in a subsequent post, but for now I’ll drop the philosophizing about immortality, death and dying and take up an issue that I’m currently faced with given the fact that we’ve tamed my myeloma. 

A few months ago, while I was still struggling with active myeloma, the pain in my bones was severe, and it was compounded by peripheral neuropathic pain. At that time a priority for me was pain relief. It still is to a large extent, but now, my priority is to see how far I can go in weaning myself off pain medications that were crucial for me for the time I was under the full effect of myeloma.  Now, I’m on two prescription pain medications and I take acetaminophen when I think of it. I was on three prescription pain meds until just recently, but I quit one of the medications cold turkey. Along with several annoying side effects, one of the more insidious side effects of that medication is dry mouth. My sense of taste was affected. I could barely taste some of my favourite foods and some I could not taste at all. I was anxious to try life without this med and as it turns out I’m quite confident that I’ll be fine without it. 

That leaves me with two pain meds. Gabapentin is a med I take for neuropathic pain. I’m currently cutting back on it to see how it goes. I’m not going cold turkey on Gabapentin, but I am determined to eliminate it from my pantheon of drugs. Hydromorphone is the drug that is the backbone of my pain treatment. I take it in slow-release form twice a day to deal with the daily predictable pain I get from myeloma’s excavations of my femurs as well as from sciatica and degenerative disk disease. I can also take hydromorphone in what’s called a pain breakthrough mode. That is, if the slow-release form of hydromorphone isn’t doing the job, I can take a more fast-acting form of the drug in any amount I feel is needed. I have taken breakthrough hydromorphone, but only sporadically, and as a last resort. I take as little of this drug that I feel will do the job. Taking more than a few milligrams of breakthrough hydromorphone leaves me hallucinating, not something I enjoy.  

The problem is that I’m seventy-four and at my age, the degenerative process is well under way. There’s no stopping it, and it’s not satisfied until it’s done. At my age, just about everybody has back pain and sciatica. These are conditions endemic to the species. It serves us right to have evolved from an arboreal species to one that is bipedal and an upright walker. Monkeys don’t have back problems. 

So, my challenge at the moment is to reduce my intake of pain meds to the point where I get pain relief without experiencing all the negative side effects of the various meds involved. So far so good. We’ll see how it goes.

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I’m writing this post on one of the hottest days of the year so far with tomorrow promising to be even hotter yet. Thankfully we have air conditioning, so the house is staying at a very acceptable 24.5˚C. Outside today, according to our weather station, the temperature has topped out at around 40˚C. Tomorrow, the prognosticators have promised us temperatures of 40˚C at mid-afternoon, so the beat goes on. 

I’m not complaining about the weather. The weather is what it is. It doesn’t respond to our needs, but instead requires that we respond to it if we’re not happy with it. Good luck with that. On to the next post now. Maybe I’ll take less time to get it out than it took me to get this one out. No promises. 

Check out this article Carolyn found for me. It’s a great discussion of chronic pain:

https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?CMP=Share_iOSApp_Other

#86. ???????

I woke up this morning at seven twenty three and got out of bed at seven twenty eight. In that five minutes between seven twenty three and seven twenty eight I had a couple of thinks1. These were little thinks, nothing momentous or earth-shattering. They were thinks about what I would do today. I decided on a couple of things to work on, writing a blog post is one and the other is going down to my studio to continue a clean up I started some time ago in preparation for some work I want to do.

Today is the day after my Daratumumab infusion at the hospital. That’s a bi-monthly event for me. We get to the hospital for a nine o’clock appointment. I grab a coffee after being logged in at the Wellness Centre then make my way to the Cancer Care Centre. After getting settled in they hook me up to an IV drip and then call the pharmacy to tell them I’ve arrived and that they can prep the Dara. Yesterday it took over an hour for the pharmacy to get the Dara to the Cancer Care Centre. I waited patiently but with a little frustration, I must admit. After about ten fifteen they released the Dara starting the infusion. I read my book for a bit but soon fell asleep. I woke up at eleven forty five. Cool. The infusion was almost done. It generally takes about one and a half hours. At about twelve twenty, Carolyn picked me up and we came home.

Along with the Dara, as you well know, I take dexamethasone and lenalidomide. These are the chemo drugs. Dara is not a chemo drug, but a monoclonal antibody. Click on the word Daratumumab in the paragraph above for some good information about Dara. Dex and Lena are very different drugs that do different things in the blood. Dexamethasone is a steroid and has some annoying side effects like interfering with sleep. That it did last night. I slept in fits and starts and got maybe four hours of sleep total. I won’t get much sleep until Monday.

My life these days is organized around my chemotherapy. Of course, my Dara infusions predominate, but the dex has the most immediate and dramatic effects aside from the hydromorphone. I most often go to bed before nine o’clock in the evening. I rarely go to sleep right away, however. Yesterday, I did fall asleep after going to bed at eight thirty. I woke up about forty-five minutes later with a start. I had gone to sleep with the cat laying between my legs. I dreamt that the cat had been joined by my brother. I woke up with nobody on the bed with me. I was startled when I woke up but relieved too because I find it uncomfortable to have the cat sleep with me. I mean, I could easily get her off the bed, but I’m a sucker for the cat. She rules.

A preoccupation I have these days relates to the purpose of life and how to determine what to do with the time I have left to live. I have all kinds of time every day to think about things so off I go. Obviously there will be some physical restrictions that hamper the kinds of activities I can do; after all, I am seventy-four years old. One serious big think I’m having these days is coming to grips with the kinds of activities I am still capable of doing amongst the many I did during my younger years. I don’t want to simply lay back and avoid any activities that would require of me exertion that might tire me or leave me incapable of doing anything for a couple of days afterwards. I’m still strong enough, but I’m not as well coordinated as I used to be. I’m learning that I have to strike a balance between what I want to do and what I’m really capable of doing. There is a slew of activities I did when I was younger that are beyond me now. I have to be realistic about these things. I cranked up the chainsaw the other day and chopped a bit of wood. That was fine. I could do that. But what I want to do in terms of sculpture would require that I use saws and chisels for a sustained period of time. I don’t know if I have the sustainability to sculpt, but I know I can paint and draw. Whether I have the desire to do these things is another question.

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1 This is a verb being used as a noun, but it’s probably not original.