I taught university level courses in sociology and criminal justice for over 30 years but now I'm retired and at 72 was diagnosed with multiple myeloma, bone marrow cancer. This site is now a chronicle of my journey with myeloma.
Well, it looks like spring has finally sprung. The temperatures are rising and we now look forward to sending less of our pension funds to BC Hydro than we have all winter.
The wisteria is now showing signs of life. We wondered lately whether or not it was still alive. Apparently it is alive, just taking its time waking up after a very challenging winter sleep. It’s warming up with temperatures consistently in double digits, but the clouds seem reluctant to part. This past weekend was gorgeous with a lot of sun. This coming week promises to be cloudy and dreary. Wednesday, tomorrow, is Carolyn’s 70th birthday and I have an appointment with my GP/oncologist at the hospital. At least it’s at 9:30 in the morning so early enough to allow us to get on with things for the rest of the day. Carolyn does not want to miss her usual daily ten (or longer) kilometre hike in the hills just up the road.
I’ve been thinking a lot lately about the reality implied in the title of today’s post, particularly the self-absorption part. Truth be told, I might be rightfully accused of being self-absorbed for most of my life. In some ways, I think, it comes with the territory. Writing is an activity that requires a lot of concerted attention and effort. As a college instructor I had to do a lot of reading and writing and for one stage of my career I produced over two hundred and fifty tele courses on the Knowledge Network for North Island College. In order to be able to produce the expected results I had to spend a lot of time in my head and in my office either preparing lecture notes, getting props or websites together, or marking assignments.
It may be an excuse to suggest that self-absorption is a consequence of work requirements, but I think that there is definitely a need to be alone to do much of the work I was expected to do. That may be interpreted as being distant, or uncommunicative, or selfish, depending on one’s perspective.
It’s a truism to suggest that living with others in a family requires at least a modicum of communication and interaction between members. Family implies intimacy and intimacy implies connection. Connection requires time together for the parents and for children. Some families are more closely connected than others, but some families are quite content with very little time together.
I can’t speak for my family and I surely won’t put words in their mouths here. However, I know that at times there were expectations that I spend more time with the family. I’ve been (rightfully) accused of being in my head too much and not being available to the family for conversation or whatnot. Some people would interpret my behaviour as self-absorption. Fair enough.
That said, as I work through my life with cancer, I find myself increasingly absorbed with what’s happening inside me and just how long I have left to live. I know a number of people who have died recently of cancer. Some have died soon after diagnosis. I don’t know of anyone who has died of myeloma, my flavour of cancer, the one that is now considered, like diabetes, to be more of a chronic illness than an ambush killer of sorts. I know a few people who are sick with myeloma, but none who have died from it.
As far as the people who have died of cancer are concerned I wonder how many of them turned inward as death got closer and closer? I have no idea, but if you do, I’d like to hear about it. Our caregivers may be the best people to address the veracity of my observation that dying forces us inward.
Caregivers have a thankless job. They may love the people they care for, but as people get closer and closer to death, they may withdraw more and more become increasingly unable to provide any kind of recognition or thanks for the care they receive. It may be that dying is a process of increasing self-absorption. I don’t know. I haven’t done the research.
Some people have done some thinking about this. I’m not the only one. It may not be research in the technical sense of the term. Actually, it might best be termed thoughtful investigation. I tend to be strictly scientific in my views on the dying process but I have come across very little in the way of a psychology of dying. There are some sources out there, but not many. Elizabeth Kübler-Ross (1969) gets a lot of attention for her work on the stages of grief, et cetera, but I find that her work is less scientific than grief and hospice counselling. It would not be impossible to do scientific work on my hypothesis that we tend to withdraw from society the nearer we get to death, but it wouldn’t be easy. It sure isn’t in my future.
So far, it may be just a feeling I’m having, or a conclusion I’ve come to with limited experience, but it makes sense to me that we would tend to withdraw as we get closer to death. Death, or course, is the ultimate withdrawal, so leading up to it must produce some stages of withdrawal or increased self-absorption. At least that’s what I’m thinking, and I’m sticking to it.
Ah, the weather is still out to lunch. We are at least a month behind in the garden. The wisteria is not showing any signs of blooming. Just sticks up there. Last year at this time it was in full bloom with a small complement of leaves coming forth. Some plants, notably some ferns and, thankfully, the garlic seem to be quite happy.
So is the Japanese Butterbur. Within a month it went from three or four buttons at the bottom of the garden to what looks like giant rhubarb. The leaves are so heavy they fall back on themselves.
Spring time has always been considered a time of joy, growth, and possibility. And so it is. Like a baby born with all the potential of a lifetime ahead, the garden is looking to the future of the rest of the spring and the full delight and warmth of summer. Fall and Winter come inevitably. They tease us with beautiful garden colours and the bare branches of winter which then carries on for what some of us think is way too long. Spring does finally come around again and soothes us with hope. We commonly call what I’m talking about here as the cycle of the seasons. Of course, it’s not a cycle. It appears to be, but last spring is not this spring. It might be more accurate to talk about the spiral of seasons.
Like one year in the vast scheme of things, a human life is that time between our birth and our death. It’s finite. This is not a fact we find comfortable because, gee, we live through many springs, summers, falls, and winters. We are not just one-year wonders. That’s true, but the illusion of the cycle of seasons should not fool us into believing that this thing goes on forever.
To carry on with the analogy of the garden and human life, for me, winter is not coming, it’s here, even during the month of May. My leaves are falling, my bark is dry and cracking. There is no moving forward to a new spring for me. If that were to happen, it would defy all evolutionary logic. No, I have to be satisfied with my life as it is, and I am, even if I am in my ‘sunset’ years. I have an intelligent, talented, and beautiful wife and my daughters have taken after their mother. I have a loving family, and I live on a gorgeous garden thanks to Carolyn’s magical touch and hard work.
There’s one thing I agree with Sadhguru* about and that’s the idea that we had better enjoy life while we can, because we’ll be dead for a long time. Of course, many people are unhappy with the coming of winter, period, and they deny it by vacationing in Mexico or somewhere else near the equator or on the other side of the planet where summer coincides with our winter.
For a time as I read Sadhguru I had the sense that he really understood Evolution and Life, Science even. For example, when he argued that we don’t die, I thought maybe he referred to the (scientific) notion that every atom that makes up our body has always existed and always will. In that sense, ‘we’ are immortal. From my perspective, our consciousness is toast, but the little things that together constitute our bodies carry on. There is some disagreement about this, but the cells that make up our bodies get replaced at various rates for a very rough average of every seven years or so in total. Another strange factoid: we very likely breathe the same air molecules that Caesar exhaled during his last breath. Cool. But Sadhguru didn’t go there. He still insists on the survival of consciousness.
So, we exist at many ‘levels’: atomic, molecular, cellular, and organic. All of these together make it possible for us to have consciousness. Once our physical platform is gone our consciousness follows. I’d be glad to change my mind about this given scientific evidence to the contrary, but that is very unlikely.
So, what’s vagarious about our lives? Well, the dictionary defines vagarious as: “erratic and unpredictable in behaviour or direction.” Boy, is it ever. One day I’m able to walk long distances with Carolyn. The next day I can barely walk at all. I would not have predicted that. Cancer and old age gang up on me and don’t back off, ever. That’s life. There’s a slew of things I used to do effortlessly. Now, every once in a while I still think I can do things but after trying for a bit, I realize that I can’t go back in time. The trick for me is accepting my new age-appropriate capabilities. I’m living the life of a seventy-five year old, not a fifty-five year old. I must accept that and not sweat it. I’m getting it. It’s a process. It’s a good thing I have Carolyn and my family to remind me from time to time of my limitations. I need reminding.
I’m quite fond of metaphor and analogy as you are probably aware by now. Well, let’s pull out another one. Cancer is like cats as they play with us mice. There are many flavours of cat, some hunt mice and kill them quickly. Some play with their mice prey for some time before losing interest and finally killing them.
I have multiple myeloma. My cat analogue is one that likes to play with its prey. Little shit. It bats me around and chases me under the dresser where I get a bit of a respite knowing full well, Mr. Cat Myeloma is just out there, waiting for me to lose patience and make a run for it. I have absolutely no chance of escape. So be it. That damn cat will get me, no doubt, but not yet.
I love the garden. Carolyn has done an amazing job cultivating it, encouraging it, and never losing faith in it.
You never know, though. I may get it into my head that I can do things again that I used to do effortlessly. I may try. I can still handle a chainsaw. I got mine started a few days ago. I need to sharpen the blade. I think I can do that. Time to find out, but I do need to be cautious, now don’t I?
I’m finding it fascinating how I’m so unable to write at the moment. Well, of course I can write, but I’m flummoxed when it comes to writing a coherent blog post. My age may have something to do with it, but there’s more to it than that. In the past couple of weeks I’ve started writing a blog post four times and for pity’s sake, I can’t complete even one. I guess I’m losing it. That’s not something I want to accept, but as we get older we all lose multiple abilities. It’s inevitable. Eventually we lose all ability. That’s when we die. Dead people don’t have abilities.
In some ways, I think I’m getting gun shy. People are dying all around me and I’m just here waiting for the sniper to pick me off. I’m keeping my head down, but that strategy will only be good for a time. The Sniper in Charge (SIC) will find me. I have no idea how long it will take for her/him to find me, but it will happen. That has me distracted, very distracted. You may find that this blog post reflects that distraction. It’s anything but coherent. But here goes anyway.
I learned the other day from a very young blogger and her father that mindset is everything in life. To some extent I agree. It’s self defeating to go into a project with the attitude that “I can’t do that.” Of course most of us can do that. Yes, we can. But that attitude is contingent on age and other characteristics we have that may make it impossible to have a ‘can do’ attitude. No matter how much I may want to, making babies is not possible anymore for Carolyn and I. We are both beyond that project.
The young person I’m referring to here is female. She and her sister operate a small sawmill as part of the family’s logging, lumber, and firewood business. They are both still teens and are very active in life outside of their work. In many ways, they are exceptional. They work in a family business. I don’t know how common that is these days but they may very well be the only young women in North America operating a sawmill of any size. Most people would consider that Man’s work. Her father declared in an interview she did with him in a recent blog post that they come from a Judaeo-Christian tradition and are actively Christian, in that they pray to God and all that. That fact gives them access to a whole community of like-minded people giving them wide acceptance in the community for their business and other activities. That’s just life for them. I’m sure they don’t see their faith and status as God-fearing White Folk giving them any kind of advantage in life. They would argue that they have just made the right decisions in life and people who make the right decisions in life create advantage for themselves by their very actions. There are various interpretations as to the accuracy of this kind of view, but it seems to work for them. It doesn’t work for a very substantial part of the population as sociology has clearly demonstrated over decades of research.
Well, I guess mindset is important for me too. I can either whine and complain about the fact I have a cancer that won’t go away and will eventually kill me, or I can just get on with things and ignore my ultimate demise. I’ve commented on a recent post that death is akin to a wall. I see it clearly on the horizon, but why focus on it? Actually, it’s hard not to focus on it, but it doesn’t make sense to do nothing else. It certainly is distracting, however.
I just captured a carpenter ant. I’ve got it on my side table under a shot glass. I can observe it moving about. It really wants to get out of this predicament and constantly looks for ways out. When I tap the glass it goes absolutely still. It’s a winged ant which means that it is at a stage in its life when it is bound to search out a new home. At this time of year they come out of the woodwork, literally. This ant seems very confused. This small prison it’s in is thwarting its destiny, which is, along with its buddies, to eat our house, which is made of wood, so lunch is served. However, I’m not particular enamoured with its destiny because we have conflicting interests. So, what should I do with this ant? I could easily kill it, or keep it imprisoned until it dies, or I could release it so that it can start munching on my house. Even if I release it outside, it’s still liable to find a spot to have a nibble. Obviously it cannot eat us out of house and home, but we know from past experience that it can, along with its buddies, cause a lot of damage. So what do I do?
I told you last post that I would be giving up on my blog. That’s still the case. I’ll likely wrap it up by the end of this month at least in its current format, but that doesn’t mean that I’ve stopped thinking or wanting to write. When my readership fell below fifty views after a post, I decided that maybe it wasn’t worth the hassle of thinking about writing every week. Of course, some people might argue that if I have only one reader that should be enough for me. There’s an argument that can be made both ways. Who knows, things change.
So, what should I be thinking and writing about now? As I get ever closer to death, it’s hard not to think about death and dying. My sister-in-law who was a couple of years younger than me, died recently. It seems like someone in my immediate circle of friends and family is dying every month. Such is life when one gets to a certain age. Of course, it’s not only older people who die. A forty-nine year old doctor in my Family Clinic died recently of heart failure. However, it’s certainly true that most Canadians, in any case, die at an advanced age. That will be me for sure because I’m already most of the way there.
Lately I’ve been trying to create a metaphor for the dying process. I think I’ve come up with one that makes sense. It’s probably not new to me, either. It’s the image of a wall, maybe a stone wall that can be seen in the distance just beyond a large, open field. In our younger days, the wall is low and hardly visible. We only pay attention to it fleetingly, maybe when we visit someone in the hospital, when we leave a funeral or witness a fatal car crash. Our physical vulnerability is only too obvious at these times. The truth is that we would have a hard time living our lives if we did not ignore the wall most of the time. Some people actually convince themselves that the wall doesn’t even exist and that even if it did, we could walk right through it. The thing is the wall is always there. As we get older the wall gets more visible. It gets bigger, thicker and broader and we begin to see individual stones in it. It begins to draw our attention more frequently. We seem to be getting closer to it and in fact we are.
My wall is clearly visible to me now. It’s so big, I can’t see much beyond it. Earlier in my life I could see mountains on the other side of it. Not anymore. Now, the wall demands my attention. It will not allow me to turn away from it. In a sense it’s a beautiful, solid wall. It’s obvious that much care was taken in its construction spanning the whole evolutionary time on this planet. Everyone has to come to the wall. No one is allowed to pass through it.
The denial of the existence of this wall is the essence of Ernest Becker’s work. My early posts on this blog consist of an exposition of Becker’s work and his contribution to understanding the denial of death. His last book, one that he had no hand in publishing because he was dead, was rightly entitled Escape From Evil. The evil that Becker writes about is death and disease. This book is a must read for anyone who wants to understand the power of denial in our lives because it’s a power that has determined so much of the death and destruction this planet has experienced with Homo sapiens at the centre of it.
Let’s now explore that denial a bit from a different perspective than I would have normally used. First up is how our social world seems to be coming apart at the seams with the war in the Ukraine, growing authoritarian at home and the pandemic that doesn’t seem to want to go away. I’m talking about the discombobulation of our social world and our reactions to it. Later I write about misogyny and evolution with a nod to Aristotle, the consummate misogynist and other philosophers of his time and ilk. But first, discombobulation.
This is my drawing of discombobulation. It’s my personal visual statement of my reaction to the Kurt Vonnegut world we live in today.
The word discombobulation is an old word from the 19th Century that shouldn’t be forgotten because it so expresses the sense that not much makes much sense anymore. The world really hasn’t ever made much sense if one considers humanity’s millennia-old legacy of war and brutality combined with a huge dose of goodwill and caring underlying much of human history. It seems as though every generation has to learn this truth on its own never learning from history. I’ve spent my whole adult life in a quest to unravel this discombobulation. I think I have things more or less worked out (with the help of a lot of people now dead who were much smarter than me), but I can’t seem to communicate that to enough other people for my knowledge to make much sense. At least I feel that way sometimes. I may be like the proverbial falling tree in the forest with no one around to hear it fall. What does it matter? Well, it does matter to me. Sometimes I think of my writing as a drop in the bucket of cultural commentary, but it’s still a contribution.
That said, it’s a contribution that will leave many people behind. Admittedly, reading my blog posts requires a modicum of literacy. I don’t speak to a Grade 8 audience. That in itself will limit the influence of my work. My personal intellectual voyage can never be yours, but we must learn from each other otherwise the discombobulation wins. Patently, there are many people (No, I haven’t done a survey although others have) who are incapable of hearing what I have to say because they have been captured by an ideology that is inherently contradictory in itself but still seems to speak to their individual lives somehow. I’m talking about people who deny that we are inherently social and dependent on each other not only in our families and other intimate relationships, but in a collective sense with people we don’t know personally but who, combined, hugely affect the world we live in.*
I’m referring here to people who see taxes and government as an infringement on their freedom, whatever that means. They have no idea themselves what ‘freedom’ means, and it’s almost embarrassing if you dare ask them what they mean by it because their answers are naive to the extreme and essentially childish. In other aspects of their lives they may be competent enough, but when it comes to thinking about their place in the world and their responsibility to others, they just have no idea, except to spout platitudes they have absorbed by watching too much Fox News or have been absorbed by concentrating on their belly buttons for too long. I’m no big fan of much of what government does, but I’m not willing to chuck out the baby with the bathwater either.
Recently, Carolyn and I listened to a CBC Ideas podcast on The Authoritarian Personality. The people who fit this profile are the people I’m talking about. The Authoritarian Personality is an idea popularized after the Second World War by Theodore Adorno and others to try to explain why people are attracted to fascist leaders. The book is available to be borrowed for free at the Internet Archive but it’s been revived and republished with an introduction by Peter Gordon of the Frankfurt School and is available on Amazon in various formats, including as an eBook, but it ain’t cheap. The book was first published in 1969 but was in writing for some time before that while the research for it was being conducted in California. The book itself and the blazing controversy surrounding it can be seen at the Internet Archive by simply typing in The Authoritarian Personality in the search function and looking around. Some of the reactions to the book are a full example of discombobulation. In fact, I would argue that the book is itself a treatise on cultural discombobulation as are reactions to it. We live in a discombobulated world but there’s nothing new about that.
So, I’m thinking that this post is long enough. I have probably another 5 or 6 thousand words I want to get out of my system at the moment but I think I need to break those up into manageable chunks. Therefore, I’ll leave this post as it is but I’ll carry on writing about the other topics in the title of this post and present them to you as soon as I get them fleshed out with good references, etcetera. Besides, it’s six o’clock in the morning and I’ve been writing since two thirty. Yesterday I went back to the hospital to get back on my chemo regime. The dexamethasone I took yesterday won’t let me sleep anyway, so instead of fretting that I can’t sleep, I might as well write, but enough for tonight…it’s getting light out and the coffee beckons.
*This is a disparate group of people from grocery store clerks and managers, to cops, to delivery drivers, to municipal workers, librarians, veterinarians, road crews, mechanics, garbage (solid waste) collectors, baristas, Hydro crews, emergency personnel of all kinds, Hospital workers including medical doctors, nurses, technicians, etcetera. I mean anyone you come into contact with on a daily basis and who provides you with a service you depend on. Just think about it. You are massively dependent on others, even people in China and other Asian countries who make your T-shirts, jeans, phones and computers for you, and on the people who work on the planes and boats that get those products to you. How can anyone deny that? But they do because to recognize this fact they would have to accept that their individualism is contingent and not absolute. We are not free to do whatever we want. Let’s just get over that silly notion. I used to challenge my students to unplug their homes, and I mean in every way: cut off water, electricity, the internet, waste collection, everything. Do that for a few days and then let’s discuss how independent and ‘free’ you are.
The conventional thing to do at this time of year is to reminisce about events of the past year and pick out highlights and possibly low lights, in this case, of 2021. Well, I would do that except that my brain is quite mushy right now. I’m not sure why. It may be the chemo meds. They have a variety of side effects that vary from week to week. This week my meds may have decided to afflict me with a sludgy brain to go along with my barely functioning legs.
Then there’s the fact that 2021 was, to be charitable, less than a stellar year. Chemotherapy and monoclonal antibody infusions every four weeks for a morning at the hospital can put a damper on life. Part of the problem with the chemotherapy pills I take every day is that I experience a surprising range of side effects. While all this goes on, I have a lot of difficulty writing. I can’t seem to hold onto an idea or a train of thought for any length of time. I’ve tried to put together a couple of blog posts over the past three weeks, but they’ve turned out resembling alphabet soup rather than carefully crafted narratives. Right now, I seem to be experiencing a slight window of lucidity, but that may just be self-delusion on my part. I have no idea how long this window will be open. You be the judge.
Today is January 1st, 2022. The first day of the year is supposed to be infused with positive thoughts, merriment, and optimism. I guess saying that 2022 will not be the year that I die qualifies as optimism, or maybe reckless self-delusion. I turn 75 years old in a few days. I know I’ve written it before on this blog, but I say it again: How in the hell did that happen? It seems to me that I was forty years old yesterday. Now seventy-five? WTF. Following Barbara Ehrenreich (who is my age) I have noted in the past that I’m old enough to die. That’s true, but still, I have confidence that people will not have to publish an obituary about me in 2022.
My memory has gone for a crap. I don’t have dementia, that’s for sure. But still, I guess that’s to be expected of a person my age. I retired from twenty-nine years of teaching at North Island College in 2012, but I had been teaching in the Lower Mainland since 1976. Since my retirement, I have somehow mislaid recollection of so many things. I do have this blog to jog my memory. I started it in late 2012 and have produced over 300 posts since then. That’s a lot of bits and bytes engraved somewhere in a computer hard drive or on the cloud, whatever and wherever that is. I think that the number of words I’ve clicked out probably amounts to at least a five-hundred-page book. I know that since my cancer diagnosis in the fall of 2019 I’ve put together the equivalent of a three-hundred-page book chronicling my experience with myeloma, its side effects, and chemotherapy with its side effects. Now, I’m not sure what I’ll do with this blog. Unfortunately, I have very little energy to do much of anything physical. The oncologists in my life are very reluctant to tell patients what to expect of a life with cancer, especially one like myeloma. Gawande is clear on that:
“Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40 percent of oncologists admit to offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms — “the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught.” (from “Being Mortal” by Atul Gawande)
I have found that with old age and a crumbling infrastructure, and as I note above, a lot of physical activity is out of the question. Coming to terms with that reality is very difficult, I can tell you. Carolyn and I have done some camping over the years since our retirement. Sometimes we were accompanied by family. Most often we were out there by ourselves. We spent most of our time camping in Strathcona Park. I hope to be able to go camping again, but I don’t have a lot of strength and energy. That’s something I have to work on so that I can DO STUFF this coming spring and summer.
Now, I don’t have to think about physical activity. We have a blizzard outside and snow 50 centimeters thick. So, I read. I have five books on the go right now. I’ll discuss them soon in a post!
I must admit that I’m a bit depressed these days. A substantial contribution to my depression is the amount of caution I need to exercise every day in the face of the coronavirus COV-2 and the cancer that I still harbour in my bones. Even though I’m triple vaccinated, I still need to be very cautious lest I contract the virus in my compromised state. Picking up an infection, any kind of infection could be deadly for me. Carolyn is also immunocompromised because of arthritis meds she is on, so we are somewhat reclusive these days. Carolyn still does virtually all the shopping, but I do get out with her now and again. In my younger days, I was a moderately social guy. Not anymore. Among many other things, I miss having a beer at the CBC with friends.
As far as myeloma is concerned, there seems to be just minute traces of it in my blood. Of course, I’m still on chemotherapy. Who knows what would happen if I suddenly went off chemo. I may need some dental work requiring an antibiotic. My local GP/Oncologist figures that I shouldn’t be on chemo and an antibiotic at the same time. He suggested that I think about going off chemo for a while, at least during the time I need for the dental work. He also suggested I talk to ‘my’ oncologist in Victoria about it. I had an appointment with an oncologist in Victoria this coming Monday, but he cancelled, according to his assistant, because he was called away unexpectedly. Great. I haven’t had a meeting with an oncologist in Victoria for months, and now who knows for how much longer. I haven’t had an appointment with the same oncologist in Victoria twice in a row. They are specialists, of course, so I don’t expect to have the same kind of relationship with them as with my GP, but still, I don’t know how continuity of care happens in this situation. I feel a little abandoned.
What I find as distressing as anything as a person with cancer is the absence of predictability. Well, I guess I can always predict that I won’t be able to predict how things will go. I can usually predict that I’ll be going to the hospital every fourth Thursday of the month for an infusion of Daratumumab, but even that is a toss-up. It all depends on my bloodwork. If it’s good, then I go. If not, then I don’t go, and things change quickly. What I mean by the absence of predictability is more the idea that when I get up in the morning, I have no idea whether I’ll have any energy, will be lucid, or how much pain I’ll be in, and in which part of my body. Right now, the peripheral neuropathy in my left hand is bad, especially if I sleep on it in a particular way. As I write this, I’m feeling very tired and ‘dizzy’, even disoriented. I feel like I have a hangover. I don’t like it. I’ll go down for a nap soon. I’ll see if that helps. There’s no predicting.
I know three people who have chosen MAID (Medical Assistance in Death). The reports from relatives (or from themselves) suggest that they went gently into the night under conditions of their own making. I know others who have either not had the time to set up MAID, or who, for whatever reason, chose to let things run their course and for whom the pain of dying was muted with the help of morphine or other pain killer. After reading Barbara Ehrenreich, Brian Greene, Siddhartha Mukherjee, Atul Gawande, and Jason Fung, all authors I’ve discussed in this blog at times, it strikes me that slipping gracefully into death is not a fate most of us will share. I don’t know what the billions of people in the poorer parts of the world suffer as they approach death. I know that in some places where wars are still all too common, death by a bullet or a machete are a fate that await many people. Death by poverty is all too common. It’s true that death awaits us all, but the conditions of dying are not democratic. Considering all living things on this planet, dying is generally shunned. Yesterday, while shaving, I inadvertently disturbed a spider who was minding its own business in and around the vanity lights. It took off, scurrying like mad, wanting to live another day, I surmised. It did not want to die.
As biological organisms we tend to cling to life for all it’s worth. Obviously, there are exceptions to this rule. Even for people who commit suicide, I suspect (with no hard evidence whatsoever) that it’s not life they are escaping, but unrelenting pain, physical and/or mental. I’m sure that they would gladly continue living if the pain would only go away. I think that’s true of people who choose MAID as well as those who commit suicide in any number of non-sanctioned ways. Of course, the people who I know chose MAID were older. As Barbara Ehrenreich wrote (somewhere, probably in Natural Causes) when she got to be seventy-five years old: “I’m old enough to die now.” I’ll be seventy-five next year, and I guess I’m old enough to die too, but I think I’ll endeavour to stay alive in 2022.
I just finished reading Deaf Sentence, a novel by David Lodge. Carolyn tells me it isn’t Lodge’s best work, but I quite enjoyed it. I really should review it sometime on Amazon. In any case, finishing a novel for me is quite something. I don’t usually read books until I go to bed, and that’s usually around 9 PM. At that point I may read a few pages, but usually I fall asleep after a few minutes with book still in hand or Kindle on but with light out. I was about half way through the book a couple of days ago after reading it for a couple of months. For some reason, I went to bed as usual but unlike most nights, there’s no way I could fall asleep. I had no hint of sleepiness. So, I started reading the book at around 9:15 and, except for pee breaks, I didn’t put the book down until 5 AM. Now that’s a marathon reading session for me. Completely unpredictable and not particularly welcome, but after I realized that there was no way I was going to sleep I relaxed and enjoyed the book. Finished it too!. Damn the clock!
In the book, when the main protagonist’s father dies at age 89, he takes it as an opportunity to muse about death in general. He quotes Wittgenstein, probably the most famous of all 20th Century philosophers who died in 1951, and who wrote: ” Death is not an event of life. You cannot experience it, you can only behold it happening to others with various degrees of pity and fear, knowing that one day it will happen to you.” Having myeloma I can assure you that death is never far from my mind.
Still, life goes on. I certainly don’t think about death all the time. Every once in a while I’ll remember that I have incurable cancer and I say to myself: “Yeah, I’m on my way out. But then I think I might not face death for another ten years. There have been many other myeloma patients who have lived over ten years. It’s not at all uncommon. I really don’t dwell on it. Dealing with pain on a daily basis takes up much more brain power than contemplating death. Thankfully, I have some dedicated palliative care docs who talk with me every week so as to constantly tweak my meds. It seems to be working better than it has been. I can usually sleep these days without taking ‘breakthrough’ hydromorphone. The gabapentin seems to be doing its job but I wouldn’t swear to that in court.
Most days I spend in my recliner although I do get up now and again for a bout of exercise. We have a semi-recumbent bike in my studio. I use that occasionally although it’s not my favourite way of getting exercise. I really enjoy walking on the River Walkway but I don’t get there that often. It may be that I’ll have to drive myself down there two or three times a week. Carolyn usually walks the dogs in the morning on the trails in Cumberland. I really can’t join her because of the distances she walks, the pain in my legs, and the uneven walking surfaces. I’m not complaining, just thinking out loud trying to figure out a way of getting a little more exercise without too much danger to myself or others. I drove the truck the other day without too much trouble so I think I can do it more regularly. Carolyn is doing an important job walking the mutts, so she needs to be free to do that. It’s true that I don’t need as much looking after than I did a few weeks ago. I still have moments of excruciating pain, but Carolyn can’t do anything about that. She is already very attentive and an excellent caregiver. I am so fortunate.
A few days ago, feeling chipper, I went out into the yard to do a few chores, like chop firewood. Yes, we still burn wood. In fact, we just got a new wood stove that is rated at 1.8 gr/hr. It’s a Pacific Energy wood stove made in Duncan, same brand as we had before, but with many upgrades from our old stove. You won’t see smoke coming out of our chimney 98% of the time, only for a few minutes when we first get it going in the morning. We burn only dry wood, down at least 14 months. We check the humidity of our firewood with a humidity gauge. I expect we’re among the most responsible wood stove users in the Valley. I’m sure people will still object to us burning firewood. So be it.
My recliner is close to the stove. I like it. Keeps me warm inside and out.
Tilly is getting so big. Seven months old, well over 70 pounds now. Not only that but she’s losing her puppy ways and is becoming a really sweet dog. Carolyn has posted recent pictures of her on Facebook. She’s big buddies with Cooper, the neighbour’s dog. He’s ‘intact’ and was getting very interested in Tilly’s butt so we thought it wise to have her spayed. She got through that very well. Now, she and Cooper fly around the yard wrestling and playing tug-o-war with a toy or a stick. They’ve destroyed so much of the garden with their antics but Carolyn just shrugs knowing that things will recover and will thrive come spring. We can only hope the dogs get more relaxed as time goes on and are less apt to run around the property like gilly-galoos. We expect they will get mellower and mellower as they age. That’s generally the way it works with dogs. Tilly always gets treats from me first thing in the morning. She might even get some later in the day if she’s a good dog, and she is most often a good dog. She gives us lots of kisses.
I’m finally able to write a few paragraphs. My neck has been such a problem lately that I haven’t been able to write much or draw and paint much either. It’s because my neck gets spasms easily if I look down at the computer screen for too long. Ten minutes at a time is about all I can handle. However, I remembered that acetaminophen works quite well for neck pain. I took a couple last night for my arthritis and degenerative disks in my neck and that seemed to help. I took a couple at around 8 AM this morning and now, although I still have neck pain, it’s manageable. We’ll see how long it works. I want to go outside and play.
Funny how I used to take acetaminophen regularly for some kinds of pain and it worked marginally well. Then I forgot about it when I got into stronger meds after my cancer diagnosis. Hydromorphone is my go to pain reliever now, but I’m also taking a low dose of gabapentin on the advice of my palliative care docs.
Palliative care docs are specialists in pain management. They often get linked with end-of-life care, but their mandate is much broader than that and is tied to pain management generally. We talk every week, usually on Wednesdays always working to fine tune my meds to balance pain with my need to be able to do some activity. Of course, as my pain doc told me this week they could easily make me pain free. I’d be pretty much catatonic though so we’ll probably save that for when I’m closer to dying. No, the objective with my pain docs is to balance pain management with quality of life.
I must say that lately it’s been a bit of an odd dance. We tried nortriptyline but it made me excessively sleepy without doing much to lessen my pain levels. We tried a really low dose of gabapentin. That hasn’t seemed to have worked very well so we’re now increasing my dose of gabapentin to a bit of a higher dose to see if that makes a difference. That’s always on top of my basic hydromorphone slow release tablets that I take morning and evening.
I suggested to my pain doc yesterday that I should just go off of all pain meds to just see what happens. She said that I probably shouldn’t do that because the pain would be unbearable without some intervention. I have to agree, but it’s frustrating. It’s hard to know which med is doing what when I take a cocktail of meds. It would be simple to back off to just one med, but that wouldn’t work either because as I noted before, neurological pain is different from muscle pain with is different from bone pain, arthritis and disk disease. I need different meds for the various kinds of pain I have so a cocktail is required. Simple would be nice, but it’s not practical.
So, I sit here now banging away on my computer keyboard. My neck pain is manageable but really annoying. I’m hoping the increased dose of gabapentin will deal with the neurological pain I have in my legs, but we’ll see. It takes a while to kick in. I’ve had two MRIs this week. The first one was on Monday and imaged my lower back. The one yesterday was for my upper back and neck. I’m not sure how they may help with diagnosis or with determining what drugs will work for me, but at least they will give us a good baseline for subsequent tests.
I’ve been thinking a lot lately about the time I have left. I have incurable cancer so it’s like I’m on death row waiting to see if my next appeal (chemo course) works or not. I’m technically in remission right now. We’ll know in January how that’s going. I’m scheduled for blood tests on January 5th, the day after my 74th birthday. That will mark seven months that I’ve been off of chemotherapy. I hope those little bastard myeloma proteins take a long vacation and I can stay off of chemo for a while longer.
Inevitably though, chemo won’t work anymore and that will be that. Bring on the morphine and call in hospice and MAID people at that point. When I get to the point that I can’t DO anything anymore, I will probably welcome my exit from this mortal coil. The thing I regret is putting my family through a long, prolonged, slow exit. Maybe it would be better to pull the plug sooner than later. But I’m not ready to make that decision. So, we carry on, balancing meds, counting on chemo to beat back the myeloma proteins when they get out of hand, and hoping for the best.
I haven’t written at all about politics lately. I’m tempted to, but my neck pain may decide how much I can write, draw and paint. Politics is fun, but it’s not at the top of my list of priorities at the moment. Cancer has a way of focussing my attention narrowly on my life and possibility. I’m still interested in BC politics, Trump, etcetera, but they just aren’t centre of mind like they used to be for me when I was teaching. The pandemic is close to mind too, of course. I’d love to see my family as much as I can. Covid makes that impossible. Cancer and Covid are dominating my life right now. Not the best of scenarios, but I do have Carolyn to commiserate with and to share my Covid isolation.
I’m not sure how we can talk about happiness in the circumstances we are in. I’m not happy about any of this shit but that doesn’t help much either. It’s just that how in hell can anybody be happy right now?
This is a re-blogged post: I first published this post in January of 2018. It has become one of the most popular posts of the hundreds I’ve posted since I started in 2012-13, viewed almost 500 times in 2020 alone. Somehow I find it’s relevant to my last post. Just after my mother died on January 13th, 2018 I posted a comment and a few days later I posted this one. Originally it was just called It turns out we die from the feet up. If you read this post in 2018 you might want to skip reading it now. I think it’s worth reading again.
[Disclaimer: Don’t read this post if you are sensitive around the topic of death and dying up close.]
It turns out we die from the feet up. Well, that’s not strictly true in every circumstance, some people die from a bullet to the head, but it has an element of truth to it. As I noted in a previous post, my amazing mom died last week, on the 13th, very near midnight. She would have been 94 on April 4th. I wrote before that she died a good death, but that’s not what this blog post is about.
For three days or so before mom died, we held a vigil by her side. I have many siblings but two of my sisters were especially attentive towards our mom and visited her virtually every day at her care facility in Coquitlam. They were especially present during this vigil, but most of my other siblings showed up at one time or another as did some of their children and even grandchildren. We spent many hours in mom’s room and out in the hallway. Some of my sisters (and a brother-in-law or two) spent nights by my mother’s side too.
My mother was 93 when she died. Her story is really astounding and is one of sacrifice, caring, selflessness and dedication. She married my father on January 28th, 1946. He had 5 daughters from his first marriage. His wife died in childbirth as she was giving birth to her first son. Because my father had to work to support the family I assume he put out the call for help and my mother, 21 at the time, answered that call. She moved into dad’s house to look after the 5 children and to do all the housework too. Long story short, my mom soon after married my father and they proceeded to have 10 more children, I being the oldest. I’m 71. I was born in 1947, a year after my parents were married. My eldest sister from dad’s first marriage is about to turn 83.
Well, it turns out that although we are a loving and caring family we are also prone to irreverence. We love to laugh and tease each other but we also care about and respect each other, despite our differences. As my mother lay dying, we got to wondering just how the staff knew that she was in fact near death. We asked questions and the nurses and care aides responded in very matter of fact ways. How can we tell when someone is near death? I had heard that when the kidneys shut down that’s a sure sign that the end is near but in this case, mom had not had food or liquids for 2 or 3 days. It would be difficult to tell if and when her kidneys shut down. All this time, mom’s pulse appeared to be quite strong and although her breathing was irregular, it seemed to be consistent.
One of the nurses then told us that it’s possible to roughly assess how long it will be before someone takes their final breath by looking at their legs. When the toes and feet get cold and a line of blotchy skin appears, that means that it won’t be long. Now, nurses and care aides have a lot of experience with having people die on their watch. It would be foolish to ignore what they have to say.
After that, we proceeded to periodically lift the blankets off of mom’s feet to see how her toes and feet were doing. We didn’t notice any special coldness at first. Even on the day of the 13th, it didn’t look as if her feet had changed much in colour or temperature. We often checked on mom’s feet to see if they were getting colder or if the line of blotchy skin was going up her leg. The nurse said that when the line gets to the knee, that’s it. Death slowly creeps up our legs. Of course, there was no question of mom coming out of this crisis alive, so it was just a waiting game now.
I left the care facility around 4:30 PM on the 13th so I could have dinner with my daughter and her family in Vancouver. We half expected mom to still be alive in the morning when we returned to the care facility. I was getting exhausted too and needed a good night’s sleep. As it turned out, that day was the last one I would see my mother alive. In the early morning minutes of the 14th I got calls from one of my sisters and a brother-in-law telling me that mom had passed away, but my phone was on vibrate and I missed their calls. At breakfast, I learned that my mother had passed away a few hours earlier. Within two hours of her death, the people from the funeral home came around and took her body away. Shortly after that, some of my family members cleaned out her room of all of her personal belongings leaving no trace of her ever having been there.
I called my sister and we talked about what happened as mom got closer and closer to taking her last breath. It so happens that the nurse was correct. Mom’s legs had indeed gotten cold and blotchy as her heart became too weak to pump blood to her extremities. By the time she died, her legs were cold up to her knees and her legs were blotchy.
So, along with the grief and sadness that we all felt as we watched our mother/grandmother/great grandmother/mother-in-law die, we learned about how the process evolves.
Right up to her last moments our wonderful caring mother had something to teach us.
This is not one of my regular myeloma posts. I told part of the story I’ve written below in a February 2015 post. Ever since then I’ve wanted to expand on it so as to tease out some truths about the events surrounding the death of my father’s first wife and his subsequent marriage to my mother. History and biography are mostly fabrication, the invention of the past on the basis of one-sided, biased information, conjecture and, of course, ideology around actual facts like the time and date of certain deaths and other events. That doesn’t mean they’re not interesting and related somehow to the truth. Anyway, without prejudice, I offer the following:
Part 1: My father
Life is complicated. Relationships are complicated. People are complicated. Take my father, for instance. He was intelligent, generous, level headed and kind hearted, but at times he had fits of anger that were shocking because they seemed so out of character for him. He teased us children mercilessly, sometimes to distress. He could be, and was, physically violent on rare occasions. We never spoke of such things so I have no way of knowing what were the deep-seated impulses that led to his rare bouts of uncontrollable anger. He was never violent towards my mother that I know of, but he beat my older sisters one time that I recall very vividly.
From what I remember, my sisters were whining and complaining about doing the dishes or some such thing, probably yelling and screaming, fighting amongst themselves when my father, for some reason had had enough of it. He let fly with a pot that was handy, hitting them with it repeatedly until they all cowered on the floor, weeping and in shock. I might have been six or seven years old at the time and I remember cowering myself in the hallway, by the bathroom door wondering what could possibly be going on. To this day as I think about it, I can still feel the dread and fear that overwhelmed me at the time. I don’t recall anyone discussing it much after the fact, but it was traumatic and definitely left an impression. That I do recall.
He hit me too on the odd occasion for various reasons. I was no angel as a child and I may not always have conducted myself with the propriety and reasonableness that should, of course, inform the actions of all well-behaved five-year-old boys. I remember one time when at about six years of age, maybe seven, I smacked a kid (accidentally, of course) over the head with a garden hoe drawing a substantial amount of blood. No serious damage done, but you know how head wounds can bleed. I got ‘the strap’ for that one. When my father got home from work that day and my mother had conferred with him telling him all the sordid details of my great misdeed, his duty (I presume he saw it as that) would be to clinically administer several blows to my open hand with a rubber and leather strap he had gotten from his workplace and which he kept on a kitchen shelf for just such occasions. He did not draw blood, but in his mind I needed to be punished. I had to learn that there were consequences for what I had done. The logical course of action was for him to hit me, a perfectly acceptable and even expected thing to do at the time although I wasn’t enthralled with the idea.
My father was driven by a sense of duty to his church, his family, and French-Canadian tradition. He did not question his duty to have as many children as God expected of him and he took great joy in each of us. He was ill educated in the formal sense. He never learned to read nor write although he could do rudimentary arithmetic. He might have made it only to grade four in school but it was not because he was incapable of schoolwork; it was because he was needed to work on the farm in Alberta where he grew up and he needed to take care of one of his brothers. I don’t recall he ever mentioning it, but my older sisters told the story of why he had to look after one of his many brothers a little differently than was told to us much later at a family gathering in 1989 by one of our many uncles, I can’t recall which one. As my father had told the story to my sisters, he hurt his back so badly as a child that he could barely walk making it impossible for him to trek the three miles back and forth to school in Fort Kent every week day. Eventually we were to learn a different version of the events surrounding my father’s story. As my uncle told the story my father and his brothers were roughhousing one day in the farmyard and my father jumped on one of his brother’s back so hard that it virtually crippled him. My father’s punishment for that offence would be that henceforth he was to carry his brother around with him on his back wherever he went. He packed my uncle around for years. My uncle eventually fully recovered from his back injury and was able to walk on his own. Whatever the truth, my father did not attend school much as a child. He was no less intelligent because of it but his inability to read hampered his career during his working life. Ultimately, although we never discussed it, I forgave him his desire to save face by concocting a version of events that allowed him a more morally acceptable role in the accident that led to his functional illiteracy. Sometimes lies it seems are easier to live with than the potential opprobrium that might ensue with people knowing the truth.
My father seldom drank alcohol and never smoked but he did gamble every once in a while. He was what most people would have called “a good man” in the day. He worked hard and rose to junior management positions in lumber mills around the Lower Mainland in spite of his illiteracy. He was active in parish life and in the Knight’s of Columbus. He also fathered fifteen children.
Part 2 Childbirth and death
I don’t know if what I am about to write is entirely true or not, but it may very well be given the time. It was 1945, June 22nd. The war would be over soon. Normally this day would be a time for celebration, but this day would not be one of those. This day my father’s wife, Yvonne, would die in childbirth. She was an otherwise healthy twenty nine year old woman who had already given him five daughters. This day, something would go horribly wrong in the delivery room and Yvonne would bleed to death. Her newborn son would also die in the delivery room. I heard it said that Yvonne died because my father couldn’t afford a blood transfusion that would have saved her life but I was later to find out that this was a fabrication. One of my older sisters told me in a telephone conversation after my father had died that friends and family, even nurses at St. Mary’s hospital, donated blood but to no avail. I don’t know that to be true, but I expect it’s closer to the truth than the first account I heard of about no money for blood.
Just imagining what my father had to go through with his wife dying in childbirth and five young daughters to look after at home I expect that he was wrought with sorrow, anger, panic and despair no matter how his wife had died. First he had to break the news to his daughters that their mother would not be coming home. Then he had to find a way to look after his daughters while still going to work. He may have believed that the whole thing was God’s will. I really don’t know. I’m certain my father thought about that wretched day in 1945 every subsequent day of his life.
Part 3. An old photograph
I have an old photograph. I don’t know who took it and I’m not sure exactly when it was taken, but it must have been sometime in 1943 because in the picture my father is holding in his arms my half sister, Denise, who was born on January 10th, 1943. She is the only one of my siblings who is no longer alive. She died in 2004. In the photograph she appears to be a year old or so, which would mean the photo would have been taken sometime in mid 1943. In any case, looking at the photo, it doesn’t look like Yvonne was pregnant at the time with Roger (the name they intended to call their new baby if it had been a boy), but she may have been.
There is no obvious way to tell where the photo was taken, but the ground is dry and there’s no snow. I’m guessing it was taken somewhere in or close to New Westminster, British Columbia. Actually everyone in the photo is dressed for a nice, warm spring day, and they’re all standing in front of my father’s 1929 Ford Model T.
In the photo, my father’s first wife, Yvonne, is farthest on the left. She is standing just behind my half sister, Lucille, who at that time was two years old. She has her hands resting on Lucille’s shoulders. Next to her on her right is my father and he, as I said, is holding Denise. Standing next to him is my mother, Lucienne Leguerrier at the time. Next to her is Rémi Leguerrier who married my father’s older sister, Isabelle, and farthest on the right is my aunt, Cécile, mother’s older sister. Uncle Rémi, standing between them, has his arms around the shoulders of my mother and my aunt. He’s smiling too. The children are not smiling, neither is Yvonne although she may have been suffering from morning sickness and that might explain why.
Who could know that when this picture was taken my father’s first wife would be dead within the year and my mother, Lucienne Leguerrier would soon be his new wife. So, here we have my father flanked by his two wives. Never would he have guessed at that moment, smiling for the camera, holding his youngest daughter, that Yvonne would soon be gone and that he would be scrambling to find a way to look after his five daughters while still going to work. The picture tells nothing of the sorrow to come.
My father and Yvonne moved to British Columbia in 1936. As it turns out they made friends with the nuns who ran St. Mary’s hospital in New Westminster where all their children would be born. Apparently my mother had worked there for a time as did my father and it was the nun/nurses at the hospital who suggested, after Yvonne died, that my father ask my mother-to-be to come help look after the children while he went to work in a local sawmill. That wasn’t a stretch because the Albert family knew the Leguerrier clan when everyone was still living in the vicinity of Bonnyville, Alberta a few years before. So, my father knew my mother’s family before a number of them migrated to British Columbia during the Depression looking for work. My father was resourceful and capable of doing various kinds of lumber mill related work so he was able to find employment. My mother was equally resourceful and unafraid of hard work.
When Yvonne died, my father asked my mother-to-be if she would help and she agreed that she would. Months later, actually it wasn’t too many months later, my father had my grandfather and grandmother come to New Westminster to look after the children because my mother, who had been a surrogate mother to my father’s five daughters, had returned to Alberta unexpectedly it seemed. It turns out that she had returned to Alberta anticipating that my father would join her shortly so they could be married in Alberta at Fort Kent and both return to New Westminster as husband and wife.
Now my older sisters, really my half sisters, had a new mom. My mother was only twelve years older than my oldest half sister, Hélène. That caused minor friction to start with because when Yvonne died my father had told Hélène that she would now have to be mommy to the four younger ones. Now, she was being displaced as mother of the family but that animosity soon dissipated because my mother had lived with them for a few months already giving time for attachments to grow between them.
I cannot imagine that my father was not steeped in pain and sorrow during that whole time, but he had no other choice but to carry on. Sorrow must give way to children and their needs.
After their wedding in Alberta on January 29th, 1946, my parents wasted no time in getting on with the business of making babies. They were to have ten in all, but I was the first. I was born on January 4th, 1947, not even a year after my parents married. If my father’s first wife, Yvonne, had survived, I would not exist. Life’s like that. What I did get was my brother’s name. My half brother, had he survived, would have been known as Roger. That’s the name on the tombstone in the cemetery in New Westminster that marks the grave of he and his mother, Yvonne. So, I carry the name of my dead brother. It seems strange to say, but had he lived, my father’s life would probably not have been that different than how it actually turned out.