12.22.2023

what i'm reading: 2023 wrap-up, a reading plan for 2024, and why i now create reading plans

I've finally figured out this reading plan thing. A list that will guide me but not overwhelm me. A way to make sure I read at least a few old titles that have been languishing on my Books Universe list for ages. A list that will keep me obsessively reading, but not obsessed with the list itself.

Here are the results of my 2023 reading plan.

Five current (within three years) nonfiction

Empire of Pain: The Secret History of the Sackler Family (2021), Patrick Radden Keefe (review)

The Invisible Kingdom: Reimagining Chronic Illness (2022), Meghan O'Rourke (review)

Madame Restell: the Life, Death and Resurrection of Old New York's Most Fabulous, Fearless, and Independent Abortionist (2023), Jennifer Wright (review)

The Story of Jane: The Legendary Underground Feminist Abortion Service (2022), Laura Kaplan (review)

Galileo and the Science Deniers (2020), Mario Livio (review to follow)

An Immense World: How Animal Senses Reveal the Hidden Realms Around Us (2022), Ed Yong (currently reading; review to follow)

Five older nonfiction from my Books Universe

How to Change Your Mind: What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence (2018)Michael Pollan 

Bread and Roses: Mills, Migrants, and the Struggle for the American Dream (2006), Bruce  Watson (review)

Sea People: The Puzzle of Polynesia (2019), Christina Thompson (review)

Delusions of Gender: How Our Minds, Society, and Neurosexism Create Difference (2010), Cordelia Fine (review)

Raising Expectations (and Raising Hell): My Decade Fighting for the Labor Movement (2014), Jane McAlevey and Bob Ostertag

Ten fiction , including five (total) from authors I have not previously read: Margaret Laurence ✅, Donna Tartt ✅.

This year most of the fiction I read was for the Labour Book Club I was leading through my union. The reading wasn't particularly satisfying, but I loved LBC, so on balance that was a win. 

Of the list of authors I hadn't read but want to sample, five turned out to be too many. But I did read two of them, and in previous years read another two or three, so that is slowly happening. 

Here's the fiction I did read.

The Goldfinch, Donna Tartt (loved, recommend highly)

Crook Manifesto, Colson Whitehead (loved, recommend highly -- of course!)

My Notorious Life, Kate Manning (review)

Shuggie Bain, Douglas Stuart (review)

Young Mungo, Douglas Stuart (loved, recommend highly)

In Dubious Battle, John Steinbeck (LBC) (had read before, a very long time ago)

God’s Bits of Wood, Ousmane Sembène (LBC) (review)

In the Skin of a Lion, Michael Ondaatje (LBC) (had read before; a very good book)

The Stone Angel, Margaret Laurence (second time I've tried to read this)

The Cold Millions, Jess Walter (LBC) (had read before)

The Last Ballad, Wiley Cash (LBC) (had read before)

For the Win, Cory Doctorow (LBC) (review)

Gilded Mountain, Kate Manning (LBC)

Advance one ongoing goal ✅✅ 

Completed weekly installments of Gotham: A History of New York City to 1898 (whoo-hoo!)

Returned to Taylor Branch's America in the King Years trilogy, and finished the final third of the final book, At Canaan's Edge, abandoned in 2007

My 2024 Plan will separate this goal into two: "advance one ongoing goal" and "one massive book to be read in weekly installments".

Also read

A First Time for Everything, Dan Santat (excellent children's graphic novel, will review)

The Secret Pocket, Peggy Janicki (children's, indigenous, excellent, will review)

Many feature-length stories in The Atlantic, The New York Times, Harpers, The Guardian, Vox, The New Yorker, and elsewhere, saved and tracked through "Reading List" on Chrome

Why do I have a reading plan? 

Sometime in the late 2000s, I realized I was spending less time reading. Or, more accurately, I was spending too much time reading a whole lot of nothing -- scrolling, reading headlines, a paragraph here and there. It was very unsatisfying, and was contributing to feelings of disconnection, lack of focus, and general dissatisfaction. I had all but lost the deep reading that I love, and have done all my life.

With this realization, I began a gradual lessening of time spent on social media, less time consuming news, and more time reading books. The more I did this, the better I felt. 

This is not only because I love and value reading. The larger issue is being intentional about how I use my time. Time is our most valuable resource. Time is our only non-renewable resource. I don't want to waste it -- and by waste, I mean using non-work time in unsatisfying ways. We're all familiar with frittering away time and not knowing where it went. That's what I'm striving to avoid.

I've always been a bit obsessive about how I use my time. I never take on a new project without first figuring out how I will prioritize it in my life, what I will reduce or move in order to fit in the new thing. The internet and social media had fractured that, and I wanted to reclaim it. 

The Attention Merchants by Tim Wu was enormously helpful for this. By the time I read Digital Minimalism by Cal Newport, it was clarifying and articulating what I already knew. If this is something you're looking for, I recommend reading both these books.

So in keeping with all of this, a reading plan has helped me focus my reading, and be more intentional with my reading time.

12.11.2023

what i'm reading: the invisible kingdom: reimagining chronic illness

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke is a important book. I would even call it a landmark. 

For ten years, O'Rourke suffered from a debilitating condition that was either misdiagnosed or dismissed. Her search for answers forms the structure of this book. 

Although the author writes about her own experience, The Invisible Kingdom is not a typical illness memoir. It doesn't follow the familiar trajectory of illness-adjustment-recovery-lessons learned. O'Rourke uses her own story as a springboard to explore chronic illness from social, cultural, and political perspectives, intertwined with the personal story.

O'Rourke exposes how the American healthcare system, medical training, and culture conspire against chronically ill people, creating insurmountable obstacles and destroying lives. 

This book is a must-read for anyone struggling with chronic illness, but even more importantly, it's a must-read for health care practitioners. 

It's written in a US context -- a culture which worships individualism, where healthcare is not a universal human right, where both the amount and quality of care one receives is dependent on privilege. However, readers from countries with universal health insurance (that is, all other so-called "developed" countries) shouldn't dismiss this an American problem. While some conditions aren't in play, far too many still apply. At its core, this story is happening all around us, no matter where we live.

A complicated gaslighting

The Invisible Kingdom illuminates how the dynamics of conventional medicine obstruct and prevent people with chronic illness from receiving appropriate care. The issues fall into three categories.

Not being believed.

This is the one condition nearly universal to people with chronic illnesses and invisible disabilities: doctors discount and dismiss their patients' stories. When test results turn up negative, doctors -- at best -- shrug their shoulders and move on. At worst -- and frequently -- they assume that the patient is exaggerating, attention-seeking, or drug-seeking, or that their symptoms are the result of anxiety or depression. I venture to say that everyone -- and I do mean everyone -- with chronic illness has encountered this. A majority of doctors simply do not believe their patients. 

Instead of realizing or admitting that their diagnostic tests are inadequate -- that medical science is imperfect and incomplete, that it has not conquered every condition, that this patient's symptoms exceed either the doctor's own knowledge or the current limits of medical knowledge -- the doctor discounts or dismisses the patient. Rather than question the adequacy of the tests, the doctors question the validity of the individual's own experience. The Invisible Kingdom shows how one group of doctors who dealt with Lyme disease took this to extremes. They  

long seemed unwilling to acknowledge that patients were coming to them with their own knowledge. . . .  Instead of devoting compassion and energy to patients with persistent symptoms, many doctors focused on discrediting their testimony.

Hypochondria is a thing, as is Munchausen Syndrome. But those psychiatric conditions are relatively rare, and not difficult to diagnose. Most people do not seek the care of specialists for fun or out of compulsive need. It's exhausting -- physically, emotionally, and in the US, financially. The vast majority of sufferers are, in fact, suffering. Yet all too often, doctors attribute undiagnosed pain as evidence of a psychiatric condition.

More than one doctor told O'Rourke that "everyone is tired," or "it's normal to have some aches and pains as we get older". This was maddening to even read about! O'Rourke reminds us that most people have no trouble distinguishing between normal tiredness and all-encompassing, crippling fatigue. As she writes:

Just because a symptom is common -- and subjective -- does not mean a patient cannot tell the difference between a normal version of it and a pathological one, the way we experience the difference between the common cold and the flu.

I can't help but wonder why this dynamic is so common. One maverick autoimmune specialist O'Rourke interviews espouses the necessity of a personalized approach -- which is exactly the opposite of how western medicine operates.

Alongside the usual standardized protocols, [patients with unusual and persistent symptoms] clearly call for the tactics of personalized medicine, because the immune system is so complex -- and so individualized. . . . This complexity is a problem for the conventional medical system. . . . The conventional folks are very, very good at what they do. . . . But a patient with a constellation of symptoms that doesn't clearly fit a diagnosis is not somebody that they want to deal with. . . . Nothing is more threatening to who you think you are [as a doctor] than a patient with a problem you cannot solve.

Medical silos. 

As she searched for answers and relief, O'Rourke saw many specialists. Throughout, she was forced to coordinate all the results and manage her own care -- while enduring mind-bending physical pain, extreme fatigue, and the added stress of not being believed.

Insurance companies, and doctors who allow their practice to be driven by billing systems.

Insurance companies expect doctors to see patients for 10 minutes at a time, no matter what their needs, and to see massive numbers of patients every day. Chronically ill people can't fit their needs into this system, so the system shunts them to the margins. 

This is typically as true for publicly-funded systems as for private, for-profit healthcare. (BC's NDP government recently changed the provincial health authority's billing system in recognition of this barrier to care. It can be done!)

Alternative medicine may be useful, but is not a panacea

O'Rourke also sought help from practitioners of alternative or complimentary medicine. She had some good experiences, but she also brings a critical eye to this system. 

Complimentary medicine is typically very expensive, and not covered by insurance -- meaning, it is usually only available to people with privilege. Offerings run the gamut from those well supported by evidence to outright quackery. A person who is hurting and desperate, and who has been abandoned by conventional medicine, is easy prey.

However, alternative practitioners offer two things that conventional medicine does not: they believe their patients, and they have time for them. This is a powerful combination, and that power makes it a potentially dangerous (and incredibly expensive) path.

The mind-body link: a confusing picture

Complicating this picture is the undeniable link between the neurological system and the immune system. Simply put, our state of mind does impact our health. As everyone with chronic illness knows, stress can trigger and exacerbate symptoms. Yet this doesn't mean the illness is caused by stress, and it certainly doesn't mean our symptoms are psychosomatic or imagined.

It's a conundrum. Positive thinking will not make illness go away, yet negative thinking actually does make it worse. With some autoimmune conditions, hopefulness has been correlated with a lessening of symptoms. This confusing and seemingly contradictory reality can bolster the disbelieving doctor's suspicions. As O'Rourke's husband said at one point, "This seems like one of the hardest things about being sick in the way that you're sick: being sick makes you stressed. But being stressed makes you sicker."

O'Rourke writes about the growing field of psychoneuroimmunlogy: a new, greater understanding of the interactions between the nervous system and the immune system -- between body and mind -- is beginning to emerge.

One glimmer of hope is the emergence of autoimmunity centres, modeled on cancer centres -- a multidisciplinary approach, with same-day specialist appointments in the same facility, and cases discussed in a team setting. In her research (but unfortunately, not in time for her own illness), O'Rourke finds an automunine centre boasting 17 disciplines and a commitment to streamlined continuity of care. In this setting, physicians may spend hours meeting with patients and with one another, searching personalized answers.

Practitioners in this emergent field acknowledge that diagnostic tools are limited -- as they have been throughout medical history -- and that there is much medical science does not know. The research arm searches for more tools, while doctors from the clinical arm listen, believe, and brainstorm creative solutions.

Another sign of hope is the conventional medical community's recognition of long covid. Long covid has proven that medicine's understanding of viruses is flawed and incomplete. Many doctors are suffering from long covid, and this has apparently brought an ah-ha moment to treatment of viruses and autoimmune disease.

Social determinants of health

O'Rourke also reminds readers that systemic racism, substandard housing and nutrition, food deserts, intersectional bigotry, and other social determinants of health are always in play. As she fights for care, she is always aware that as a white, cis, educated, middle-class woman, she has access to care that so many others do not. Suffice to say that if the author found it nearly impossible to access appropriate care, we can assume that many others are left behind at the outset.

A story known to many

Meghan O'Rourke lost ten years of her life to this struggle -- ten years that should have been her most productive professional years, and her best childbearing years, as she did want to have a baby. She was in nearly constant pain, and subject to fatigue that made it impossible to function, with no way to predict or control when a cycle would strike. 

It's no wonder that O'Rourke became severely depressed, and at least one point, lost hope. That she continued to search for answers and function to whatever extent she was able is testament to remarkable inner strength, grit, resilience, and determination. Reading The Invisible Kingdom, I often thought of the original meaning of the Finnish word sisu (not the current, pop-culture meaning). Sisu is used to describe the Finns' national survival in the face of multiple Russian invasions. Meghan O'Rourke did the same.

I have never faced an illness as debilitating and mysterious as the one that O'Rourke writes about. But although my experience was more mild by comparison, the elements and the trajectory were very familiar. I believe most people with chronic illness, especially women, will also recognize the pattern.

I frequently say "I was misdiagnosed for seven years." But actually, my original diagnosis was correct. For insurance reasons, I had to see a different family doctor, and he threw out that initial, correct diagnosis, pronouncing it a "garbage can diagnosis" for a nonexistent syndrome. He decided I had a different condition. When my bloodwork did not confirm his diagnosis, he ignored the results. He supposedly knew of a cutting-edge treatment that was getting good results, and applied that to me. I now realize I was used in a long-term, nonconsensual treatment experiment. 

For seven years, I took the wrong medication, while my symptoms worsened and expanded. The medication negatively altered my digestive system and my metabolism. 

As my symptoms worsened, I became less active; eventually the joint pain became so severe that I was nearly sedentary. The wrong medication, inactivity, and stress-eating led to weight gain -- at which time my doctor declared that my joint pain was caused by my weight. In reality the cause and effect were exactly the opposite.

This doctor refused to refer me to a specialist, claiming a specialist would only confirm what we already knew. Of course, the insurance scheme included financial disincentives for doctors to make referrals.

I felt like I was falling apart. I felt desperate. Friends urged me to insist on a referral. When the doctor said I appeared to be anxious and stressed, and suggested I go on anti-depressants, that was the last straw. Once again, he was reversing cause and effect. I was anxious and stressed -- because I was in so much pain, and because he wouldn't help me. Not the other way around.

I insisted on my right to see a specialist, and the doctor finally wrote a referral. In one visit, the specialist made a diagnosis: the original diagnosis I had gotten seven years earlier, the one the family doctor threw out. I never returned to that family doctor, and I began the long road back to health. (If you are interested, the whole story is here. I share that link only in that it may help someone.) 

A vow of honesty

Meghan O'Rourke teases out the many threads that are woven into this story -- how an invisible, chronic illness impacts friendships, relationships, work life, family life, and worst of all, our very sense of self. O'Rourke is also a poet, and some of her metaphors and descriptions were too esoteric for me; other readers might find them exactly on point. Regardless, she brings a unique and compelling storytelling style to the issue. 

The Invisible Kingdom contains many reflections on illness, pain, and suffering from a wide spectrum of sources -- Susan Sontag, William Styron, Elaine Scarry, Barbara Ehrenreich, Alexander Pope, Bernie Siegel, Alice James, and Norman Cousins, among others, and a wealth of complex medical information rendered in plain language.

The book is equally notable for what it doesn't contain: there's no bright-siding. O'Rourke rejects "the wisdom narrative", where "illness is a vehicle for self-improvement and hard-won acceptance". She writes:

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering.
It is difficult to look at the shadows of physical suffering clearly, because to do so, I know, is to risk inviting depression, or a terrifying apprehension that the world is made of pain. But when I was at my sickest, I resolved that if I got well enough to write about my experience, I would not give false assurances. I would not write letters reassuring those I loved that my life had not been utterly compromised. Now that I am somewhat better, I can tell you the truth: When I was at my sickest, my life was utterly compromised, and my very sense of self was gone. When I was less sick -- and there were periods of relief in my illness -- I could step back from the experience and take pleasure in the vividness of the blue sky from my bedroom window. But I will not repeat falsehoods; I will not say that wisdom and growth mean I wouldn't have it any other way. I would have it the other way.

12.03.2023

write for rights 2023: my fifteenth year #w4r2023


2023 marks the fifteenth year that I have participated in Amnesty Interntional's Write for Rights.

Fifteen years ago, I chose one case, one person. I wrote to officials about them, and wrote to them as well. 

I upped the ante a bit more every year, until the year (date unknown!) when I challenged myself to write a letter for every featured case. Since then I've written at least one letter for each of the 10 featured cases, and at least one letter of support.

In 2014 I also joined Amnesty's Urgent Action Network. Urgent Action sends you cases on an occasional basis; you write to officials on their behalf if you can. I respond to about half the emails I receive, depending on what's going on in my life. 

There is one more piece I want to add: I want to organize a virtual letter-writing group event. This is an obvious step for me, but so far I haven't been able to get it off the ground. But I haven't let go of the idea. Eventually I'll figure it out.

I'm not sharing this to win praise or admiration. I'm sharing it to encourage you to write with me.

It's very easy

My annual W4R letter-writing takes about an hour -- and that's because I choose to write for every case, 10 global cases plus one from Canada. You could easily do the whole thing in 15 or 30 minutes.

The only cost involved is international stamps, as I like to send paper mail when possible. I consider this part of my end-of-year charitable donations (albeit not the tax-deductible kind). If postage money is a barrier, you can easily choose only cases that can be contacted by email.

Amnesty offers tons of support. There are sample letters, toolkits, case cards. If you're intimidated by doing this on your own, there are groups you can join to help motivate you. There are also resources for educators and organizers. 

This year there was even an option to receive a paper kit by postal mail. That's a lot of paper, so I didn't order a kit, but if it would help motivate you, sign up for Write For Rights and Amnesty will send you one.

It works

Amnesty has developed Write For Rights because it works: go here and scroll to "success stories".

Last year, people in more than 200 countries took over 4.6 million actions -- letters, emails, tweets, petitions. They helped individuals in dire circumstances, while exposing conditions and highlighting urgent issues.

Write For Rights saves lives. It gives comfort and support to people who are suffering for their activism. It shows families of these heroes that they are not alone. 

W4R 2023: this year's global cases

This year's global cases focus on these individuals, countries, and human rights.

➤ Maung Sawyeddollah, in Myanmar, is exposing Facebook's role in the murderous campaign against people from the Rohingya ethnic group. 

➤ In Australia, two Indigenous people known as Uncle Pabai and Uncle Paul are fighting to save their ancestral lands from the ravages of climate change. To save a culture that has been passed down through generations for thousands of years, they have gone to court to demand Australia take immediate and meaningful action against climate change.

➤ Thapelo Mohapi, in South Africa, is in hiding and fears for his life. Thapelo is a leader of Abahlali baseMjondolo, a grassroots movement working to improve the lives of people in South Africa. Members of the group are being targetted and murdered.

➤ In Tunisia, Chaima Issa speaks out against an autocratic government. She has been arrested, detained, and banned from meeting with others or speaking in public. She remains defiant, despite facing decades in prison.

➤ Rocky Myers is an intellectually disabled Black man in the US state of Alabama. He is on death row for murder, despite there being no evidence linking him to the crime. His trial was a riddled with issues, including a witness who has since admitted that they lied. After nearly 30 years on death row, Rocky could be executed at any time. 

➤ Justyna Wydrzyńska, in Poland, has been arrested, prosecuted, and convicted for helping women access safe abortions.  

➤ In the United Arab Emirates, Ahmed Mansoor is being held in an isolation cell. Ahmed's "crime" is speaking the truth about the UAE, providing the world with a very rare glimpse of the rampant human rights violations in that country -- including fake trials, and the detention and torture of dissenting voices. For more than a year, no one knew where Ahmed was being held. Now he faces a decade in prison.

➤ Thulani Maseko, in the southern African nation of Eswatini, endured more than a year in prison, until he was executed in his own home. Thulani's "crime" was defending human rights in a country ruled by an absolute monarchy.

In Brazil, the son of Ana Maria Santos Cruz organized "Walks of Peace", where people would speak out against police abuses. He was repeatedly threatened, and then murdered. Ana continues to fight for justice for her son.

➤ In Kyrgyzstan, Rita Karasartova leads the Institute for Public Analysis and is a member of a democracy movement. For her peaceful work against poverty and injustice, Rita was arrested, detained, and denied access to healthcare. She is now under house arrest, charged with attempting to "violently overthrow the government".

Human rights abuses in our own backyard

In the list of annual cases, Amnesty reserves one spot for the letter-writer's country. I love this idea. It reminds us that urgent human rights issues don't happen only in faraway lands. The cases in Canada usually involve Indigenous peoples, and are often taking place in my own province -- still known as "British Columbia".

➤ The Wet'suwet'en First Nation is under threat from a huge pipeline being constructed through their traditional and unceded territory. Wet'suwet'en land defenders have been harassed, intimidated, forcibly removed, and criminalized by the RCMP, Canada's national police force. They need our support.