#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.

Seizures! What else now?

After at least two consultations with nurses and an oncologist, my GP has decided that I’ve probably had a couple of seizures over the past few months. Great.

Lately, after an internet conversation with one of my blog readers I wrote to them about how fully my life had become medicalized. See if you agree with me: I take a bunch of pills morning and evening to deal with cancer and pain. I go to the hospital twice a month for bloodwork and a two-hour infusion of Daratumumab. Monday we went to Nanaimo so that I could get a corticosteroid (dexamethasone) injected into my seventh cervical vertebrae to deal with the chronic pain in my neck; Tuesday morning I had an appointment with my GP for a prescription renewal, and to discuss a plan to send me to Nanaimo again, this time for an EEG if the CT scan I got Tuesday evening showed nothing. In fact, it did show nothing that could explain the two seizures I’ve had over the past few months, one very recently, so off to Nanaimo I go.

The thing is, if they find an abnormality in my brain using the EEG, they will simply want to put me on another drug, an anti-seizure drug. I’m already pickled in meds so why not another one?

My life seems to be driven by medical issues. I’m not alone in this, of course. Many of us have a close personal involvement with medicine, whether in the form of physicians, specialists, pharmaceuticals, hospitals, and various other medically-related bureaucracies like our Health Authorities in British Columbia, possibly all of the above. They should actually be called Sickness Authorities because that’s what they deal in, sickness. 

The provincial budget allocates billions of dollars for illness related issues. It’s hard to pinpoint exactly how many billions of dollars because they get spread out over several spending categories. For instance, the Ministry of Health is projected to spend approximately $25.5 billion in 2022-23 of an estimated $71 billion in total budgetary expenses. There’s another approximately $8.6 billion for infrastructure related to health. I assume the new Dementia Village in Comox falls under this category. Aging and dementia are health issues, apparently.

So, tons of money is spent every year on health issues. I account for some of that, I certainly do. The Daratumumab I get by infusion every month costs a reputed $10,000 a pop. Now that’s a big investment in my being. I’m not sure it’s justified, but it happens because of an overarching ethic dominated by the fear of death and the perceived sanctity of life. As Ernest Becker points out in Escape From Evil, the twin pillars of evil for us humans are death and disease. We do everything we can to fight them. Obviously we fail completely in dealing with death, and fighting disease is often a losing battle too. So, what are we doing? What’s the point? What if we had no ‘industrial’ medicine? Humans lived on this planet for millions of years without doctors, hospitals, and pharmaceutics? Why do we spend so much on them now? 

I can safely conclude that part of the motivation for spending such inordinate amounts of money on ‘health’ is to keep the workforce working and reliable day after day, week after week, year after year. Industry requires consistent effort from the workforce, especially from those workers with technical or managerial skills. Another motivation is the transfer of power from workers to managers, in the case of health, from us ordinary folk to the specialist professionals, doctors. 

Since the 19th Century and the advent of scientific management, the control of commodity production has fallen on the managerial class. Workers have been stripped of all control over the productive process. In the case of health, doctors are the managers of our health. We negotiate with them to some extent, we even oppose them at times, but by and large they are in control. I must say though, that that situation is changing and your ordinary GP is becoming more and more a worker for a large bureaucratic organization that controls multiple clinics. Some American hospitals, for instance, extend their control over health spending and profits by buying out or establishing clinics where doctors are employees like any other. 

Obviously we live in a capitalist world where possessive individualism rules, where business is allowed to create products and services that may or may not be conducive to healthy bodies and minds. The fast food business is clearly not interested in our health. Money is the name of the game. Any deleterious consequences for our wellbeing caused by eating too much fast food is addressed by public spending on hospitals, doctors, pharmaceuticals, et cetera. Pharmaceutical businesses might initially be organized with an eye to alleviating human suffering and enhancing wellbeing, but it seems that they soon fall in line with all capitalist ventures in the need for profit above all other values. They depend on illness for their profits. I don’t think that’s such a good thing.

Then I got to thinking. I remember when I was a grad student reading a book by Michel Foucault* called The Birth of the Clinic: An Archaeology of Medical Perception. It was written in the early 1970s. The translation into English from the French (Naissance de la Clinique) has a 1973 Copyright date. Foucault was a prominent critic of institutionalized criminal incarceration, the medical clinic, madness, and sexuality, among other topics. He was a very controversial figure in French academia for decades, and a very prolific writer. He’s a ponderous writer to some, but an elegant exegesist to others. I find his critiques compelling in some ways, but belaboured in others. In other words, he’s complicated.** 

In his book on the rise of the medical clinic, his major point is that the medical ‘gaze’, the creation of a specialized, comprehensive, and institutionalized consideration of disease and pathology would become the exclusive domain of the medical clinic. We’ve even been convinced that pregnancy and aging fit nicely under the medical gaze. Other commentators on the power of modern medicine such as Ivan Illich emphasized the class basis of control over human health whereby we become supplicants in our relationships with doctors, whereas Foucault and his followers see the medical/health landscape as a set of power relations that work to “reproduce medical dominance” (Lupton, page 88). 

Because we are so freaked out about death and disease, Foucault would argue, we negotiate our necessarily subordinate relations with our doctors on an ongoing basis. According to Lupton, there is collusion between doctors and their patients to reproduce the system of medical dominance. That’s true in my case, certainly. Without modern medicine, I’d be dead right now.

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*The Passion of Michel Foucault (March 1, 1994), by James Miller is one of the best biographies I’ve ever read. It’s balanced, decisive, and comprehensive. Definitely worth a read. Come to think of it, I need to read it again. 

**See Deborah Lupton, Foucault and the Medicalization Critique, Chapter 5 in Foucault, Health, and Medicine, Edited by Alan Peterson and Robin Bunton, 1997, Routledge: London and New York. 

Sorting Things Out

The gnawing fatigue and peripheral neuropathy I experience every day from myeloma, chemotherapy and B12 deficiency I can understand. Other symptoms are less understandable and less tractable. Some of them are ongoing, some temporary.

So, today I’m telling you a story of a particularly nasty experience I had this past weekend that defies classification and that has stumped my oncologists. That may be because it isn’t related to myeloma. I don’t know. That it turned out to be temporary I consider to be a good thing, but I have no real justification for feeling that way. I won’t describe in graphic detail everything I experienced. That’s not necessary, but I will give you the gist of what I experienced so that you understand the context, that is, what I think led up to this weirdness, and its aftermath, which is still with me.

Last Thursday I went to the hospital for my monthly infusion of Daratumumab. On that day I also took dexamethasone, Benadryl, lenalidomide, aspirin, and hydromorphone (HM), that is, my usual cocktail of meds. I also took some Senokot, to counteract the constipation that invariably accompanies taking HM. I’ll also take Dulcolax if I need it as things go on.

On Friday, the dex left me with the usual spurt of energy meaning that sleep does not come easily. I got up on Friday morning having had virtually no sleep after 2 AM, but the dex was still doing its thing. We had been invited by friends to their place for a get-together before dinner, around 5:30 PM. It was so good to be out visiting friends, but it was still fairly cold out and after a couple of hours I decided it was a good idea to get back home. I was chilled more than I thought. I climbed into bed almost immediately and covered myself with lots of blankets and quilts. My legs, however, were pretty sore. I’m used to my legs being sore, but this time they were inordinately so, and the soreness was accompanied by weakness, spasms, and tingling. The tingling is usually restricted to my feet and hands, but now my legs were also involved.

I took some extra HM shortly after going to bed (2 mg). It’s called breakthrough HM because it’s used as a supplement to the 3 mg slow release HM I take in the morning and the evening. The slow release just wasn’t doing it for me, and that’s expected to happen now and again; that’s why I was prescribed 2mg of HM to take if and when the pain gets too much. I still struggled with leg and back pain so a couple of hours later I took another breakthrough HM. At about 3 AM I took another HM. I tried to sleep without much luck.

Eventually, I tried to get up to pee. That’s when I realized that I had barely any control over my muscles, all of them! As I tried to get up I slowly slipped off my bed, which is pretty high off the ground, and found myself lying on the floor, essentially paralyzed. I didn’t fall off the bed, I slid off of it. My arms were useless and so were my legs. It’s not that I couldn’t feel them, I just couldn’t move them. Carolyn came to help me, but I’m a heavy guy and she’s light but strong. Finally, with the little help I could give her, she was able to pull me into the middle of the room. Then, she maneuvered an arm chair close to me and I was able, with a lot of her help, to pull myself into the chair. We were able, then, to get the chair close to the bed. I lurched back into bed and stayed there for virtually the whole day. I’m still feeling the effects of that episode of weird symptoms.

From my consultations with the docs, it doesn’t seem like my temporary ‘paralysis’ has anything to do with myeloma. They’re flummoxed. So, off I go to get a CT scan of my head to see if my brain is still in there. 😉

I’m posting this because I really want to know if I’m the only person who has ever experienced such a thing. That means that I’d very much appreciate it if you could let me know if you’ve ever had this experience or know of someone else who has. You can PM me on Facebook, or DM me on Twitter. Or, you can email me at rogalb@shaw.ca.

Damn, it’s dark, cold, and wet out there!

Sleepless Nights, Rain Showers and Owls

It’s 8:30 in the morning but I’ve been awake and up sporadically since 2 AM. That’s a typical scenario for me the day after my chemotherapy session at the hospital on Thursday mornings. It’s the dexamethasone (a corticosteroid) that keeps me awake. The other meds just make me feel ill generally.

Being awake at 2 AM until 7 or so when Carolyn gets up has its perks. The rain showers were amazing last night. The rain just pounds on the steel roof above the bedroom and the harder it rains the more intense the sound becomes. The first one started at around 3 AM but only lasted for twenty minutes or so. The one at 4 AM was much more intense and lasted much longer. The rain will be steady today, and probably tomorrow and the day after. The Weather Network predicts that we might just see the sun again by Tuesday. We’ll see about that.

At around 4:20, just before sunrise, I heard a great horned owl shouting its call at the back of the property. The owls like to perch in the tall conifers at the back of the property and in the forest behind our back fence. They usually sound off earlier in the year as the mating season gets into full swing. This owl may just have been a little late getting itself going, like many plants in the yard. The wisteria is just starting to sprout and the honey-locust is still yawning its opposition to getting up and at it. The ferns, though, are as happy as pigs in a wallow. They like the cooler, rainy weather and they show it.

So, at 2 AM, wide awake, what could I do? Well, I could just lay there and stew, or I could pick up my Kindle and start reading. Of course, as soon as I start reading, the cat decides it’s time for me to pay attention to her so she walks right in front of my face, sticks her tail up my nose and generally makes a pest of herself. Notwithstanding the feline interruptions I often read novels that are on the humorous side from authors like Thomas King, Kurt Vonnegut and Christopher Moore. But I also read a range of books on ‘more serious’ topics like sex, misogyny and patriarchy.

Last night I continued reading a book I picked up recently by David Friedman entitled A Mind of Its Own: A Cultural History of the Penis (2001) that had been referenced in another book I just finished on a related topic: Sex at Dawn: How We Mate, Why We Stray, and What It Means for Modern Relationships by Christopher Ryan, Cacilda Jetha (2013). Like Sex at Dawn, A Mind of Its Own: A Cultural History of the Penis is a must read if you want to understand how the social and cultural relations we’ve built around sex is so out of line with our biology. After outlining some of the most egregious sexual cultural practices in the Middle Ages in Europe around sex and later witchcraft along with a compendium of culturally weird sexual practices all over the world and since recorded history, Ryan and Jetha get into some very interesting musings on the United States and its perverse official political views and practices around sexuality, many driven by religion and the drive for power by mostly white, Protestant men of a certain age. After outlining the horrendous treatment of Black people by powerful white folk and their less wealthy followers, their base in current language, during pretty much the whole of American history starting with the arrival of slaves from Africa to work in Southern plantations, they get into some more current issues, including the appointment of Clarence Thomas to the Supreme Court. [He is a year younger than me] His appointment was very controversial for a number of reasons, the most important one being that he was (is) black. This is a long quotation, but it demonstrates clearly the issues at hand and the players that are still involved in government, including Joe Biden. It’s important to note here that Thomas had been accused by a fellow attorney Anita Hill of sexual harassment but he dodged that one. He had been nominated by George H.W. Bush. According to Wikipedia he’s widely considered the most conservative and ‘originalist’ of the Supreme Court justices. It appears that he hasn’t changed his tune at all since 1991. His views are anathema to me.

From Friedman:

“Six decades later, another black American faced a committee of white men agitated about his penis. For hours those white men listened, many of them visibly appalled, to complaints from a woman about the black man’s lewd behavior toward her, all of it, she said, unwelcome and unsolicited. They heard how he bragged about the size of his organ, comparing it to a supernaturally endowed porn star named Long Dong Silver. Now that same black man faced the same committee. Unlike Claude Neal, however, he was not dangling from a rope. Except, he said, metaphorically. “From my standpoint as a black American,” Judge Clarence Thomas told the senators considering his nomination to the United States Supreme Court, “[this] is a high-tech lynching for uppity blacks who … deign to think for themselves … and it is a message that unless you kow-tow to an old order, this is what will happen. You will be lynched, destroyed, caricatured by a committee of the U.S. Senate, rather than hung from a tree.” (from “A Mind of Its Own: A Cultural History of the Penis” by David M. Friedman, page 129 Kindle edition)

and

“The exchange between Senator Hatch and Judge Thomas about racial stereotyping ensured that no lynching would occur, high-tech or otherwise. If nothing else, the all-white members of the Senate Judiciary Committee were determined to show this was 1991, not 1891. At 10:34 P.M., on October 11, when Senator Biden recessed the hearings for the day, the verdict was clear. The nominee, so close to political extinction, had come roaring back to life. When Senator Hatch left the hearing room, he was stopped by Nina Totenberg of National Public Radio. “Senator, you just saved his ass,” she told Hatch. “No, Nina,” said the Utah Republican. “He just saved his own ass.” What both probably knew, but neither could say, was that it was another part of Thomas’s body that had really been at stake all along.” (page 139 kindle edition)

I’m about half way through Friedman’s book, but so far it’s making for compelling reading. It was clear to me back in 2010 before I retired that as I was teaching a course on Love and Sex, that women had been subject to an intense misogyny for as long as recorded history and probably for as long as our species started walking upright on the African savannah. Actually, I was aware of misogyny long before 2010 but that’s when I began a more intense focus on its deconstruction. The focus of Friedman’s book, the penis, is a literary means of shifting the conversation about sex and procreation from the biological to the cultural realm. So far, I think that he’s done an excellent job of it. His analysis of Freud’s penis envy as a metaphor for the way women have been disenfranchised and generally kept out of the highest positions of business and government is particularly good and one I hadn’t considered before, at least not in the kind of detail Friedman goes into.

More on this later…as I read the second part of Friedman’s book and tie it into other books I’ve been reading, including one by Christopher Moore.

Myeloma and Pernicious Anemia: My Constant Companions

Pernicious Anemia

In January of this year I published a post about the connections between myeloma and pernicious anemia. In that post I misidentified pernicious anemia as a B12 deficiency. It’s not. Pernicious anemia is actually an autoimmune disease that produces antibodies to a protein called intrinsic factor that is produced in the gut and that is required to ‘extract’ B12 from food. It’s a devilishly difficult condition to diagnose. Low levels of B12 are obviously an important indicator, but there are other reasons that a person might have low B12 levels. Probably the best accessible article on pernicious anemia can be found on the Pernicious Anaemia Society’s website. It’s well worth reading.

Now, I have assumed for some time that I have pernicious anemia but I’m no longer certain. It turns out that 50% to 70% of people who have a B12 deficiency, which I definitely have, will have that deficiency caused by pernicious anemia. I have not been tested for intrinsic factor antibody, a test that would definitively confirm a diagnosis of pernicious anemia, so I don’t really know if I have it or not.

Whatever, I know for a fact that I have a B12 deficiency. In order to treat that deficiency I inject B12 (cobalamin) into my thigh every two weeks. However, because of my mixed record of injecting B12 over the past twenty-five years I may have what’s called  Autoimmune Metaplastic Atrophic Gastritis (AMAG). That just means that my B12 symptoms may never go away, even after my regular injections. Then again they may dissipate, but I have no confidence that that will happen.

An International study is now underway initiated by the Pernicious Anemia Society to try to understand the extent of the disease and to track the problems people have had with getting a proper diagnosis. It may be that we will get some answers, but I’m not holding my breath. At seventy-five years of age, I have a limited amount of breath left in me in any case so maybe I should hold on to some of my breath!

Myeloma

Yeah, well, myeloma. As I noted in my January post, the symptoms of myeloma and pernicious anemia overlap considerably. So, I have no idea what’s driving me nuts with peripheral neuropathy, numbness and tingling in my hands and feet, fuzzy brain, poor balance, weakness, especially in my legs, and bone pain, to name just a few of the symptoms I’m experiencing. It could be both the B12 issues and the myeloma that are teaming up to keep me in my place, and the chemotherapy is also no doubt contributing to my now radically re-assessed quality of life.

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So, that’s it. I’m old, I have a severe B12 deficiency that could be the result of pernicious anemia, and I have multiple myeloma, with its attendant chemotherapy.

As I lay in bed last night I harkened back to times in my life when I was still able to do things easily and effortlessly, things like canoeing, woodworking, building decks, garden structures, and a number of other physical things. I can still paint and draw, but with some difficulty. Writing is even getting to be an issue because I can barely feel the tips of my fingers on my left hand, my dominant hand.

It’s been difficult at times, not because of my physical abilities, but because of my attitude towards them. I’ve had challenges keeping the dark side away, the feeling that I can’t do things anymore like I used to, making me a lesser human being, somehow.

Carolyn and I both read the news and despair at the state of the world, but Carolyn seems to have a greater capacity than I do for keeping the dark side away and for maintaining a sense of perspective about the world. It’s true that the world is in a mess, but it’s always been in a mess if the press is to be believed. I have to keep reminding myself that the press, all of it, has a vested interest in propagating the dark side. That’s where the money is. Outrage and fear sells the goods. The bright side doesn’t.

That said, I don’t want to be captured by the dark side or the bright side. The world is a complex place. Life is finite and changes all the time. Mommy doesn’t have to change my diapers like she did seventy-three years ago, even if she were still alive. I don’t have to put a uniform on and go to elementary school. I never have to write a final exam or go on a job hunt ever again. Of course, I won’t experience the joy of the early days of fatherhood ever again either, of falling in love, nor of the thrill of discovering a wonderful, new camping spot.

I guess my point with all this rambling is that life is full of variety, both at the individual as well as at the socio-political level. Some things we call bad, some good. Those are judgment calls, which for us are adjudicated with reference to capitalist morality which itself is expressed in possessive individualism based on wealth and health. We look down on the poor and the unhealthy.

These judgments are not easy to counteract both at the individual and the political levels because they are so deeply rooted in our culture. They are so familiar to us that we consider them normal and reasonable. It’s easy to feel self-loathing for being poor or in ill-health. It’s almost expected of us. And those individual feelings are reinforced every day in a thousand ways by the vast majority of us as we compare ourselves to others, those with money or excellent health (mental and physical).

If I let myself I can easily be dragged onto the psychologically dark and barren landscape of blame and feelings of unworthiness. Enough of that now. I have a limited number of days, months, and years left to live. I cannot, I will not live them in fear and self-loathing.

Death is like a destination, one we have no choice in travelling towards. But, you know, some of the best trips I’ve taken have been at their finest and most exciting just before reaching our intended destination. Maybe that’s a good metaphor for the last bit of my life.

Cancer and self-absorption.

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.

Ant Under Glass. Should I Kill It?

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? 

Help me out here. What should I do?  

Ant Under Glass

What should I be thinking about now? How about death and dying, cultural discombobulation, misogyny, evolution, and pain management?

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.

Discombobulated  

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.

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*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.

Things Change

My last post was twenty days ago. I used to put them out every week, but things change.

When I started writing this blog in 2012, the year I retired from teaching at the College (NIC) I was focussed on working through my relationship with Ernest Becker’s books The Denial of Death and Escape From Evil. For me these books contained some profound truths about us humans, how we relate to life and death, how we organize our societies as competitions for God’s attention. It’s interesting that we created God as a projection of human values, a projection that we then use as a means of judging our actions to determine just how worthy we are of eternal life. We even, according to Becker and other cultural anthropologists, divided our social groups into moieties (halves) to set up the competitive structure by which we could establish winners and losers for God’s favour, which is nothing less than immortality. Countries and Nations are the logical expression of this thesis. 

We also, over the millennia, elevated man (that is, not woman) to the predominant social position. It took millennia to do that, but once the idea stuck, it got so strongly entrenched that it became normal. The idea that men were somehow superior to women infiltrated all aspects of culture. Women were, for all intents and purposes, relegated to slave status, gatherers of food, and bearers of children. The perfectly natural womanly monthly experience called menstruation where menses (blood and other matter) are released from the uterus was held against women. Blood reminds men of dying. When men fall in combat or by accident, they bleed and they die. Men don’t like that. So women bleeding regularly could not be good either. It is a huge reminder of death. So, many cultures isolate menstruating women, treat them with contempt and shun them. By extension, men could pretend that they were more ‘spiritual’ than women. Women were biological, men spiritual. Men were clean, woman dirty. This could not be more clearly demonstrated than in childbirth, a very messy and bloody process, proceeded by months of lessened capacity and followed by the need to nurture infants, a relationship of dependency that created an avenue for men to assert dominance. These tropes still survive to this day, in some ways stronger than ever. 

I’m still captivated by the ideas I gleaned from Becker, but after I was diagnosed first with pernicious anemia (in the 1990s) and then with multiple myeloma (in October, 2019) my focus changed, and this blog became a chronicle of my life with chronic pain and cancer. Old age, of course, plays a predominant role in my life, how I feel, and how much energy I can devote to any particular task. I don’t think anyone can understand the effects of old age on the body, energy levels and strength, until it becomes personal. I promised myself for decades that once I retired, I would do all the things I had no time to do as a working person. That was true for a time, but when I hit 70, things changed, and they continue to change. From now on I cannot expect things to improve. All I can do is adjust to my changing body with its lower levels of energy, suppleness, and strength. I think my mind is still capable of some surprises. That may be delusional on my part, but that’s fine. I guess I have the right to some minor delusions. 

So, I may be afflicted with cancer and old age, but I was trained in the social sciences and they still have a strong hold on my mind. I still think that we, as men and women, need to reconcile many powerful forces that dominate our lives. One of them is misogyny, the curse that lives deep in our psyches but is not based in biology. But what of basic biology? Well, let’s explore that a bit here.

At the end of my last post I said I would discuss penises and clitorises, so here we are:

Penises and Clitorises.

Most of us have one or the other. The fact is that they are very similar in structure and function. As the long quote below maintains, at the sixth week of gestation we all have clitorises. That’s not quite right. We all have a precursor to both the clitoris and the penis. That is, penises and clitorises arise from the same tissue in the early embryo. So, the pleasure men derive from penile stimulation is the same as women derive from clitoral stimulation. Depending on the chromosomal and hormonal environment we become either female of male, or both, or neither. To say that men and women are opposite sexes is profoundly misleading. We are not, as Alice Dreger so aptly points out in her book I introduce below.

For many years I studied love and sex and taught College courses on the topic just before I retired in 2012. It’s a truism to say that the sex act is a social act so it’s clear that we are social animals right from the start. Like for most animals, our sex lives and our social lives are strikingly interconnected. 

The pleasure we derive from intercourse, and especially from genital stimulation of any kind, including from masturbation, has profound social implications, but not all of us are capable of deriving pleasure from genital stimulation, the source of sexual pleasure. That follows from the fact that humans come in so many sizes and shapes. We vary in a hundred different ways including when it comes to our sexual organs. 

Before the sixth week of gestation (more or less) we are sexually undifferentiated meaning that there’s no way to tell whether an embryo is male or female. After the fourteenth week and the androgens kick in we begin to display our sexual organs. 

There is so much information available on this topic on the internet that I don’t even want to go there. A huge number of popular sites exist along with a large number of scientific ones. I just finished reading a (Kindle) book called Hermaphodites and the Medical Invention of Sex, by Alice Dreger (1998). The book explores the way things don’t always go as we expect in the womb. Yes, the vast majority of us either end up male or female, but that dichotomy isn’t as clear cut as it seems. A visual inspection of external sex organs may lead to the belief that a person is either male or female, but looks can be deceiving and it’s impossible to look inside the brain at the hypothalamus and the sexually dimorphic nucleus (SDN) to determine maleness or femaleness as the brain evaluates it. The quote below is from a popular website. It can give you some idea of what’s available now on the internet since Dreger published her book in 1998. It addresses a point I made earlier about our embryonic selves:

Everyone starts the same in utero.

What determines whether you’re born cis-male or cis-female are your XX or XY sex chromosomes. The XX pair is cis-female and the XY pair is cis-male. During gestation (the time between conception and birth), the genes on the sex chromosomes are expressed and the fetus becomes cis-male, cis-female, or (in some instances) intersex. These sexual differences are expressed as the penis and testes (cis-male), the vulva and vagina (cis-female), or some combination of the two structures (intersex).

However, in the first six weeks of a pregnancy, before the genes in these chromosomes are expressed, all budding fetuses actually begin as cis-female, meaning that everyone begins their development in the womb with a clitoris. (Wow, right?!) Then, one of two things happens due to “a low level of the hormone testosterone [being] released,” this structure grows into a penis, says Laurie Mintz, Ph.D. licensed psychologist, certified sex therapist and author of Becoming Cliterate. Or “when testosterone is absent, the tissues develop into a vulva (including the clitoris) and vagina.”*

[Check out this YouTube event for the experience of a transgendered man. Born a ‘girl’ he never fit in and was always a man in his mind: https://www.youtube.com/watch?v=nOmstbKVebM.%5D

So, enough for now. I still want to explore further the idea of sexual reproduction going back to early eukaryotic cells and the consequences for evolution of sexual reproduction. I also have a number of other related topics I want to explore along with continuing a chronicle of life with myeloma. Later.

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*https://www.shape.com/lifestyle/sex-and-love/genital-anatomy-penis-clitoris

One Step Forward and Two Steps Back

Sometimes I think that it would be good if life were simpler. For me, it’s anything but simple. Maybe my expectations are too high. Maybe I’m not being realistic. Maybe if I relaxed a little, all would be better. Maybe. Yet, the complexity just seems to expand, to encompass everything, no matter what I do, or don’t do. 

I’ve been off chemo meds for about five weeks, and I have until the end of March before I go back on them. At least that’s the current plan. There was never a plan for long-term withdrawal from my chemo meds. I haven’t had my blood tested for a few weeks, and it will be another three weeks before I get tested again. I’m of two minds about that. It’s quite possible that the bloodwork will show that myeloma has again taken up full-blown residence in my blood and bone marrow. It may also be that it shows that I’m still okay. It’s always a crap shoot and somewhat tense for that reason. 

More concerning for me is the fact that since my withdrawal from hydromorphone I’ve been in a lot of pain. It hasn’t attenuated much at all. I’ve been able to walk a bit two or three times a week, but any walking I’ve done has been painful. I generally walk around two kilometres, and that takes me half an hour. Not a blistering pace. 

Because of the incessant pain I’m in I’ve had to backtrack and reconsider my decision to cease taking opioids. I took a slow release capsule this morning as a test and I have felt some relief. It may be that I’m dreaming in technicolour if I think that I can manage without pain meds. 

Speaking with my GP/oncologist last week was enlightening. He doesn’t think that the pain I’m having has anything to do with my B12 deficiency, opioid withdrawal or myeloma. He thinks it’s attributable to chronic pain, something I’ve experienced for decades. (I’m not sure I completely agree with him on that.) Thinking back over the past thirty years and it’s clear to me that I’ve had periods before I was diagnosed with myeloma or pernicious anemia when I’ve experienced extreme pain and other very strange symptoms like having a yeasty odour and having my skin welt up after drawing a dull object over it with not a lot of pressure.* In the mid-nineties I had a period of debilitating fatigue to the point where I could barely function. I was also depressed at that time, with good reason to be. 

The chronic pain that I’ve experienced throughout most of my life is associated as much as I can tell, with the consequences of surgeries I’ve had. The two main ones are a laminectomy (disc removal) and a nephrectomy (kidney removal). As well, I’ve had the odd accident on my bike and some running-related injuries. My neck has been a source of a lot of pain over the years brought on mainly by years of hunching over a computer terminal. I envy people who go through life with very little or no pain. There aren’t many of those in my family. I have siblings with MS and fibromyalgia. I have quite a few relatives with autoimmune diseases. It seems to run in the family. We’re also a long-lived bunch. That might be good, but it might not be so good too: all the more time to suffer from debilitating pain. 

The biggest and most distressing challenge I face right now is the weakness in my legs but I may get control over that with a low dose of hydromorphone and gabapentin. I need to move around. That’s a prerequisite for continuing to be able to move around. Being sedentary breeds inactivity and makes it harder and harder to get any exercise. Exercise hurts! Walking two kilometres brings on a lot of pain. Damn! 

And with the price of gas now, I think driving may be an even bigger pain in the ass than I’m feeling now in my ‘lower’ back. I feel that driving into Courtenay for a walk on the River Walkway is a bit frivolous when gas is $2 a litre. I can always walk around Cumberland for free. 

Tomorrow should be better for me in terms of pain. I expect I’ll walk a couple of kilometres tomorrow morning. The weather is supposed to be good. From Thursday on for at least a week it’s supposed to be rainy and cold. No reason not to walk, but it is less pleasant and I like pleasant these days. 

If you didn’t notice, and to end today’s musings, the title of this post works for some things, but not for life itself. Life never goes backwards, no matter how much we wish that it were so, no matter how many anti-ageing creams we use. 

My next post will be on why the penis and clitoris are such wondrous things and why they have so much in common. 

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*This is the strangest phenomenon. I would drag the handle of a kitchen knife over my arm and it would welt up for maybe three hours afterwards along the path of the draw. Has that ever happened to you? I’d like to know if you’ve ever experienced this.