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.


*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. 

The Conundrum of Pain…and Suffering: Part 1.

I’ve been thinking about writing this piece for a long time. It’s only now that I figured out how I wanted to organize my narrative. It’s complicated because there are so many aspects and approaches to both pain and suffering. The medical profession (and the medical ‘industry’) has its clear claim on the alleviation of pain and suffering. Philosophers and psychologists have also long been interested in the topic. Sociologists too. I won’t be quoting any sources this time. I will leave that for subsequent posts where I deal with specific scholarly and popular approaches to pain and suffering. To start, I want to suggest why I find pain and suffering of interesting.

Pain is not something that can be empirically determined. It cannot be objectively measured as far as I know. If you know otherwise, please let me know. That’s why doctors (MDs, that is) sometimes ask you: “On a scale of 1 to 10, how bad is your pain right now?” You answer: “Gee, I don’t know.” And you just throw out a number because it’s such a hard question to answer. You don’t want to say 2 because then what the hell are they doing in their office? You don’t want to say 10 unless you’re writhing in pain on the floor by the examination table. A 7 is usually good for attracting attention without getting ‘the look’. Still, your doctor may be wary.

You can look at anyone, I don’t care whether they have just been badly damaged in a car crash, they have arthritis, psoriasis, lumbago (don’t you just love that word?), and/or gout. You can impute that they’re in pain, but it’s not visible. Pain is not visible. You cannot see pain. It hides in the crevices, nooks and crannies of your body but nobody can see it so how do we know it’s really there? We may see a person with a massive slashing knife wound to the chest and we assume that person is in pain, but we never see the pain so we don’t have any way of determining its intensity or how much shock or other factors have mitigated or attenuated it.

Recently we (Carolyn and I) spent some time in a hospital emergency department because Carolyn needed an emergency appendectomy. All is much better now, but it was obvious that the medical staff were at a loss the first time we went to emerg (that’s what they call it, you know) to figure out what the cause of Carolyn’s pain might be. They may have even wondered whether or not her pain was psychosomatic. They poked and prodded her, took blood and did a CT scan. Nothing of significance was found. I don’t know what the staff thought at the time. They told her she was a conundrum and looked great on paper. In any case, we were sent home with instructions to take antibiotics, pain killers, etc. When over the next few days the pain got worse for Carolyn we went back to emerg after Carolyn was told by her family doctor that she had a classic case of appendicitis. After a few more hours sitting in waiting rooms and getting more tests including a second CT scan, it was determined that indeed, Carolyn had acute appendicitis (which we subsequently found out was evident on the first CT scan). Time for surgery for a ruptured appendix. This entire scenario was upsetting and did not need to happen. Surgery after our first visit would have been routine and we probably would have come home the same night. As it stood, Carolyn spent two days in the hospital recovering. Now, this was all nasty and everything, but I have questions about the presence of pain as Carolyn described it and the CT scan that showed an inflamed appendix. Did they operate because of the pain or because of the CT scan? The CT scan confirmed that there was an organic problem and the assumption that Carolyn was in pain may or may not have factored into the decision to operate. I’m not sure how that works.

Pain is not something that is determined objectively so how are medical personnel to know whether a person is in pain or is faking it? There are people out there who crave attention and will fake medical symptoms to get it. There are people who have what’s called indeterminate illnesses or diseases of indeterminate etiology like fibromyalgia. Some medical doctors and others associated with medicine still don’t believe that fibromyalgia is a thing. They argue that if only you’d relax, your pain would go away…that’s if you ever really had pain…wink, wink, nudge, nudge. It’s a tough call because pain is not visible. People may be grimacing and walking abnormally, and we assume they’re in pain, but we just don’t know for sure. There is probably more attention given to determining the etiology of pain in regular and emergency medicine than anything else. Guesswork has to play a major role along with targeted questioning. “Does it hurt here? No. Here? No. Then what about here? Okay, here then! Well then, we’ll just peel you off the ceiling now and figure out what to do for you. You will definitely need some painkilling meds. Get that IV hooked up. It’s certainly true that pain alone cannot trigger surgery. Just because I tell a doctor I’m in pain, that doesn’t justify her throwing me straight into the operating room. Subjective reports of pain must be supported by evidence of organic abnormality, or is it the other way around?

Killing pain is huge business. We don’t seem to like pain a lot unless we have a personality disorder and we’re masochistic. Big Pharma’s bread and butter is in killing pain. Opioids are huge business. They are used medically to mitigate physical pain symptoms, but they are also used on the street to deal with ‘psychic’ pain. [This is a topic for another blog post.]

Strangely enough, we often put ourselves through a lot of pain and suffering to accomplish a task that we’ve imposed on ourselves like running a marathon. Why run a marathon only to feel intense pain during and afterwards? What drives us to doing this kind of thing? [This is a topic for yet another blog post.]

Then, there are people, a very small minority, who cannot feel physical pain at all. They can put their hand on a hot stove element and not know that they are in trouble until they smell flesh burning. That’s not a scenario that appeals to me at all. In view of this it’s common to consider that pain has benefits in an evolutionary sense. It’s probably a damn good thing that we do feel pain. Too bad our pain is not obvious to others in an objective way. It would make life a lot less painful for a lot of us.

The peril of reading several books simultaneously and thinking about death.

I often read several books simultaneously and I’m doing just that now. Sometimes it’s hard to keep them all sorted out, especially if they’re treating the same subject matter. That’s especially true right now in terms of my interest in misogyny. Books on the same theme tend to overlap a lot. Books on misogyny are no exception. Same for books on our denial of death although it does depend on whether a book is psychological, philosophical, sociological, historical, or anthropological in its orientation. I just finished reading Being Mortal: Medicine and What Matters in the End by Atul Gawande (2014, I think). It’s psychological in a sense while being a quasi-ethnography of hospitals and nursing homes. I give you a bit of a review of this book later in this post but I can tell you right now that it’s all a bit depressing. But, don’t let that discourage you from reading it. It seems the truth is often depressing. Read it anyway and enjoy your depression. At least you’re not dead yet. Ahem.

I usually have at least one art book on the go, but they are more of an ongoing thing rather than a one-off read. Right now I have The Art of Drawing next to my chair. It’s by Richard Kenin (1974, Paddington Press). It soothes my sometimes inexplicably jangled nerves as I leaf through the pages looking at images drawn by the masters of the Renaissance. Well, I’ve been a stress case my whole life as far as I can make out so I need all the help I can get. Renaissance drawings have a calming effect on me. So, I look at them.

The other books I now have on the go are not designed to soothe my nerves. I don’t know why I read some of the books I do, because they can sometimes leave me drained and mentally exhausted, but I read them anyway. It has occurred to me that I may have some masochistic tendencies. Don’t tell my doctor. For fun, I’m reading Iain M. Banks’ book Surface Detail. This is my third Banks novel and although he sets his complex and multilayered stories on a galactic scale, it’s still all about our earthly human level frailties, our fears of life and death and our often undeniable utter stupidity. Banks is a great read but his stories do tend to overlap thematically with my other, non-fictional reads. So, I don’t always get a reprieve from my depression by reading him, but he is entertaining and that’s a bonus.

I read a lot of books about mortality and lately quite a few on misogyny. It turns out the two themes are intrinsically and historically intertwined and interdependent. It sometimes amazes me that after most of my adult life, going on 50 years now, reading and thinking about mortality that I can still get excited about reading something new and different yet on the same topic. It’s too bad I can’t get equally as excited about other things but I am getting on, you understand. If you haven’t read them yet, you may want to read my last few posts on misogyny and its relationship with our immortality striving.

For a long time, I’ve had a passing notion that misogyny and our denial of death were related, but I had no idea how closely related until I read Misogyny by Jack Holland. Now, on misogyny, I’m reading From Eve To Dawn by Marilyn French. It’s a study on the history of women from a feminist perspective first published in Canada in 2002. I wrote about this book in a previous post. This reading follows others by Simone de Beauvoir and Germain Greer to name just two. Busy, busy, I am. I must admit that I’m getting a bit saturated with this topic, but it does get at the heart of what human history has been all about so I carry on reading about it.

I have read a lot of books on how we, as humans, have devised multitudinous means of trying to deny our mortality. The latest book in my quiver on mortality is by Atul Gawande. I told you in my opening paragraph that I would give you a bit of a review of his book and here it is. Gawande’s book is close to home because I’m feeling my age, and time passes so quickly that I can see myself in his book at a very personal and immediate level. One day soon, I will die. That’s a given. Tomorrow is promised to no one. How my demise plays out is up in the air at the moment but I would like a good death if you can relate to that. I have no expectation of imminent death, but at 71, my days are numbered. That’s a fact.

Gawande is a surgeon. His book is personal in the sense that he follows his father’s (he was also a surgeon) physical decline late in his life, especially after his father learns that he has a massive tumour that has invaded his upper spine and neck causing him no end of pain. Gawande is a fixer. Like most medical doctors he is programmed to fix things that go wrong with us. He’s good at that. What he understands, however, is  that there are things that go wrong with us that can’t be fixed, like death. He writes that modern medicine and the whole ‘health’ system is geared to fixing things that go wrong with our bodies. Inevitably, of course, all the fixing is in vain and we die. He argues that in large measure medicine does not understand chronic pain and illness, cannot fix it, and is completely flummoxed by death. It’s the ultimate failure for modern doctors. Moreover, modern medicine can increase pain and suffering at the time of death by pushing treatments that falsely promise more than they can deliver. This is especially true with patients who are terminally ill with cancer, no matter at what age.

Gawande also goes after how we are treated in our last months, weeks and days of life particularly if we live in a nursing home. He has a special hate on for nursing homes that warehouse the ill and aged and he praises those that allow ‘inmates’ a certain amount of freedom in determining how they will live, ever with their disabilities. He argues that safety and efficiency are highly overrated as nursing home goals. He presents case studies of nursing homes that respect the dignity of their residents.

Gawande tells a good story while he argues that our obsession with immortality is killing us and denying us respectful deaths. The case studies he presents of young and old people struggling with terminal illness as they interact with their doctors who try to fix them are heart wrenching. I’m not looking forward to this type of scenario myself, you can be assured of that. There will be a big fat Do Not Resuscitate sign around my neck when my time comes. His work remind me of Kübler-Ross’s epic study of The Five Stages of Grief in her 1969 book On Death and Dying. Her book is much more theoretical than Gawande’s, but it had a huge impact when it first came out because people were shocked that someone would write so openly about dying.

Maybe reading several books at a time is my way of denying death. Then again, maybe not. I concluded long ago that life is largely meaningless in the grand scheme of things but while I live I have to do something. I can’t just stand around picking my nose. So, I might just as well read several books at once while I wait for the final call. It won’t matter shite when I’m gone anyway.

Oh, and by the way, I’m about to start another book. It’s by Yuval Noah Harari and is called Sapiens: A Brief History of Humankind. Wish me luck.