So this bug passed, leaving me tired, but essentially functioning again. Today’s blog will be more stream of consciousness musings than anything else, however, with my brain still trying to iron out the fever wrinkles.
Garden variety flu (accompanied by garden variety birds, yes, I need the cheer, but promise there will be non-avian photos in the future…) led to thoughts about Covid 19 – since all of a sudden the world has started to react.
If you are a regular reader you will remember that I wrote about it already over a month ago. Since then we have learned a lot of things; my own information comes in large part from the ministry of health in Germany, which has been placing ads on FaceBook and other social media for a week now urging people to go to their website to learn about prevention and treatment options.
Contrast this with our own government: with so many lies destroying its credibility, how would I trust them for advice? With its cutback of health resources, how can it functionally combat a potential pandemic now that it is arriving? How can we rely on an administration that has the most stunningly incompetent appointees in memory? How can its focus on the stock market instead of the virus not make us all nervous about the efficacy of potential plans? Is secrecy part of the deal?
Oregon, for example has currently 254 people monitored for an outbreak of the virus, but I have not seen public notices to alert people to come in for monitoring if circumstances suggest. In many states testing equipment to verify the presence of the virus is not available in sufficient numbers. (Nor are essential preventative gear for help personell should we see a real onslaught all of a sudden.) We cannot verify the exact lethality of the virus, since the way who is counted as sick or even verified as sick changes so often. It is certainly higher than the flu. It starts with vage symptoms, often a bit of nausea and fatigue, then fever and cough. Most people will recover, but for some the dangerous part sets in after about a week of having the milder symptoms. Males over 60, with preexisting conditions like high blood pressure and diabetes, are particularly at risk. People can infect others before they themselves show obvious symptoms. The virus survives on surfaces (doorknobs, tables) depending on who you believe, from 1 to up to 9 days. (Cannot verify.)
Here is an informative pamphlet that helps us to take control of what can be controlled (and includes links to what the CDC has suggested for business owners last week.) The suggestions for private citizens in a nutshell:
Try to get a few extra months’ worth of prescription meds, if possible. (Supply chain disruptions are a guarantee.)
Try to have a several week supply of non-perishable food. (Hard to suggest when you know some can afford that, most can not.)
Think through now how we will take care of sick family members while trying not to get infected.
Cross-train key staff at work so one person’s absence won’t derail our organization’s ability to function.
Wash hands, soaping them for the duration of TWO rounds of Happy Birthday that you can hum silently. That is 20 seconds, eternally long but necessary.
Practice touching our faces less. So how about a face-counter app like the step-counters so many of us use? (Ask friends and family to point out overtime they see you do it- it helps the learning process.)
Replace handshakes with elbow-bumps (the “Ebola handshake”).
Start building harm-reduction habits like pushing elevator buttons with a knuckle instead of a fingertip.
Here is a psychologically interesting question for which I have no answer: if you consider how Obama got trounced by the media during the Ebola scare of years gone by, how come our dear leader has essentially gotten a pass on Covid 19 so far? Wouldn’t you think that in an environment as divided as ours, people would jump on the opportunity to hold him to task? What is the secret key to evading responsibility over and over again?
Music today reminds us there is always a need for cheer!
Really, all I wanted yesterday was to glimpse some color on an extraordinarily dreary, damp day. Off I went to visit Lan Su Chinese garden since the red New Years lanterns all around old town/Chinatown reminded me that the Year of the Rat is upon us and the garden celebrates the occasion. I’d surely find some color there – as I did indeed. Red, pink, white, green against the dark grey of the stone and the light grey of the drizzling rain – it was perfect.
And then the chain of associations kicked in: Rats reminded me of disease vectors, disease of course of the new, deadly Wuhan Corona virus, a relative of the dreaded SARS virus. It is communicable between humans, and now emerging wherever infected people travel, including the first case that has appeared in Washington State. Our dear leader, of course deems it totally under control. We really wouldn’t know, would we, given the deregulation and cutting of funding for research and disease control (here is a fascinating interactive chart by the Brookings Institute of ALL the deregulatory actions committed by this administrations of January 2020.)
And the WHO seems to think otherwise:
The World Health Organization is convening an expert panel today to discuss whether the Wuhan virus should be designated “public health emergency of international concern,” a rare step aimed at getting more money and resources from global donors to fight an outbreak. The emergency designation has been used just five times: against polio, the swine flu, the Zika virus and two recent Ebola virus outbreaks in Africa.
The Chinese Government, despite attempts at secrecy and minimization of the expected danger – the virus is making people intensely ill with a high proportion of deaths, with no known immunization or effective counteragents – does take it seriously. As of yesterday, the 11 million people of Wuhan and surrounds (8.9 million in the city proper) are prohibited to travel and leave the region, despite the Chinese New Year which customarily sees people travel all across the country to be with their families.
That is like telling the entire city of London that it is quarantined. You don’t make that decision lightly. Travel warnings and advisories are also given to those coming into China, with dire consequences for tourism – dependent industries, particularly around the New Year which usually draws hundreds of thousands of people in addition to the millions traveling within China.
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Clearly a life and death battle against an invisible enemy is anticipated and the forces are closing the hatches. Or the airports, as the case may be. Battle reminded me of another, more positive association with recent things Chinese: the first ever translation of Sun Tzu’s The Art of War into English by a woman, Berkeley’s Professor of early Chinese History, Michael Nylan (yes, that’s her first name. And why do people focus on the gender? Valerie Niquet already translated the same book into French in 1988, and some of the best war novels ever written were by women – Pat Barker’s Regeneration trilogy and Silenceof the Girls, Christa Wolf’s Cassandra.) Art of War has been glued to the pockets of Ho Chi Minh and Mao Zedonga, served as a manual for military men and Steve Bannons of the world, many trying to understand how to vanquish one’s enemies, not necessarily just on the battle field. The translation has received positive reviews, all of which mention that the translator sent out the manuscript to a huge variety of scholars, military people and politicians to receive input.
I found most interesting what she herself had to say both about the art of translation and the lessons she drew from the text itself: that the book is in essence a manual about how to avoid war. (Her essay is really a fascinating read, found in LitHub of all places.) And how can you not be curious about a woman whose research interests include belief. (Research interests: EarlyChina: Seven centuries of Warring States through Eastern Han (475 BC–AD 220), with an emphasis on sociopolitical context; aesthetic theories and material culture; and belief.)
“It is not only that The Art of War might as well be named The Art of Life, since it famously advises readers (originally all powerful men at court) to avoid war, by any means, if possible, on the two cogent grounds that it is far too costly a substitute for diplomacy and long-term strategies, and that the outcome is never assured, given all the variables at play. Equally importantly, the Art of War, like Thucydides, conjures the entire spectrum of human motivations that lead the already ultra-powerful to seek more power through violence. Then, too, The Art of War is interested in what I call the “politics of the common good” essentially, inquiring what sort of leadership can create a stable society in which domestic disruptions and painful divisions are at a minimum. In conversation with the so-called “Confucian” Classics, The Art of War imagines a three-pronged approach, wherein the vast majority can be brought to identify with good leaders, without imposing much conformity, as those leaders have shown themselves to be humane and deliberate when serving the people’s needs, desires, and interests.”
Loved how they picked a slightly pink balloon color to match the camellias in one courtyard
Politics of the Common Good – take that, Steve Bannon! And for all those women who adhere to the Chinese New Years taboo that a woman may not leave her house all day (!) otherwise she will be plagued with bad luck for the entire coming year – think of all those ancient Chinese generals who were female! They did not exactly stay home.
新年快乐 / 新年快樂 (xīn nián kuài lè) “Happy New Year!”
步步高升 / 步步高陞 (Bùbù gāoshēng) “A steady rise to high places!” / “on the up and up” – yup, that’s not happening in your kitchen!
Music today is also a climb – for our ears and brains used to more traditional fare.
Campy, whimsical and evocatively comical,
Rated R wildly re-imagines the myths of the Chinese Zodiac Animals to encompass zany comedy and to dramatize serious social issues. In a post-apocalyptic world, the Zodiac gods suffer a crisis as their human underlings lose interest in reproducing. The Lark, a chirpy court entertainer who dreams of becoming the first Goddess, descends to the Earth to solve the mystery. Through the journey, she discovers her real passion and therefore, revives the world.
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A CHAMBER OPERA IN THREE SCENES WITHOUT INTERMISSION
The Lark (Coloratura/High Lyric Soprano), Peasant woman (Mezzo-Sop.), The Rooster (Actor or Tenor), The Rat (Basso Profundo/Bass-Baritone)
The remaining ten Zodiac Gods, humans on Earth (SATB chorus of minimum 16 voices)
Rated R for Rat was commissioned by the American Composers Orchestra through the Underwood Commission Prize, American Opera Projects through an OPERA America Female Composers Commissioning Grant, and received its first workshop with assistance from the San Francisco Conservatory of Music Opera Program.
For the last bit of this week, a bit of PR for one of the projects I am involved in as set photographer: OUR BODIES OUR DOCTORS. I’ve written about it before here. And here is an overview article on the multi-pronged legal and political assaults on our rights. Don’t let them be swept away by floods resembling the current state of the Willamette river….
On this Important Anniversary of Roe v. Wade Cinema 21 Hosts a Special Screening of OUR BODIES OUR DOCTORS Winner “Best Documentary Feature” 2019 Portland International Film Festival The event includes WE ARE FORBIDDEN, a short film directed by Cheryl Strayed and Brian Lindstrom.
On this anniversary of Roe v. Wade, Cinema 21 hosts a special screening of OUR BODIES OUR DOCTORS, Winner of “Best Documentary Feature” at the 2019 Portland International Film Festival as well as Best of SIFF and the “Lena Sharpe Persistence of Vision Award” at the 2019 Seattle International Film Festival. This feature length film has been described as “bold and brave” and “nothing short of revolutionary” in the depth of its portrayals of the work of abortion providers.
OUR BODIES OUR DOCTORS features Portland providers, often unsung heroes, and the creative work of feminist clinics in the Pacific Northwest.
“When I took on this documentary project, I was struck by how little people knew—even those that are pro-choice—about what’s actually involved in abortion care. What I found in making OUR BODIES OUR DOCTORS was a quiet rebellion in the field of medicine led by a new generation of progressive physicians fighting religious control over healthcare. The providers in the film take up difficult questions: How do they deal with the emotional and political aspects of abortion? What makes second term abortions medically and emotionally challenging, for the providers themselves and for their women patients? These are areas where pro-choice films have previously not ventured. But the providers featured in this film—and many of their patients–are bold and brave enough to take us there.” – Jan Haaken, Director
Screening with WE ARE FORBIDDEN, a 10-minute film directed by Brian Lindstrom and Cheryl Strayed.
In parts of Nepal, menstruating girls and women are considered impure. They are banished from their homes or sequestered to a room; forbidden from eating most foods and not allowed to attend school, visit a temple or even look at male family members. In this moving short film, nine Nepalese girls share their menstruation stories. The film derives its power from allowing the girls to speak for themselves, demonstrating their courage, strength and inspiring desire for change.
Providers featured in the film will join Director Jan Haaken and Producer David Cress for a Q&A session after the screening. Co-directors Brian Lindstrom and Cheryl Strayed will be present at the event.
“While a handful of forthrightly pro-choice documentaries have successfully conveyed the enhanced urgency of the issue in the 2010s – few films have managed to offer a truly novel perspective that goes beyond red-alert despair about the state of the world… OUR BODIES OUR DOCTORSis a smart, affecting documentary… Shining a light on the abortion issue from a vital yet neglected angle.”
–Cinema St Louis
“This film feels nothing short of revolutionary. The experiences of abortion providers have for too long been left out of the pro-choice vs. pro-life debate, and presenting these doctors with honesty and compassion will have a profound impact on the discourse around abortion in this country.”
I often wonder how so many women out there manage to face health decisions and catastrophes with courage, independently of how varied their circumstances. Making life and death decisions around illness or reproductive choices in itself is hard enough – if you add to that a hostile environment, economic factors like lack of employment or risk to employment, no health insurance, family needs etc., it can become an overwhelming task.
I was reminded of that by two pieces I read this weekend, marveling at the courage around us. One was an article by a young Health Care reporter at Politico, Alexandra Glorioso, whose last name is an apt description for her candor in speaking about her breast cancer diagnosis at age 31. The candor is glorious. We live in a time when the enforced silence that even only two generations earlier had to endure, is no longer an issue. If anything, there is such a flood of testimonials about going through cancer (of all kinds) and living with disease, that interest has been saturated. Or in any case devoted to hearing the success stories, not the fact that 42.200 women each year in this country still die from breast cancer.
Among this deluge, Glorioso stands out for her willingness to admit to all of the factors driving her choices about treatment and how to deal with the effects of treatment, less heroic ones like vanity included. And how can you not feel for a 30-year old dealing with issues of threats to fertility and artificially induced menopause (potentially reversible) so that the cancer can be fought without estrogen feeding it. Yet this young woman also has a support structure that is phenomenally helpful – beginning with a scientist father who knows all the right experts, to a fresh boyfriend who soon becomes a fiancee, to a health insurance that covers, if not all, then seemingly a lot of the procedures and medications. She thrives on the solidarity between strangers on the web-wide “cancer club,” who add succor and practical help with their electronic interactions.
I was moved, but it was nothing in comparison to the other piece on my desk, a book review of poet Anne Boyer’s new book The Undying. The very first paragraph had me jump up and call a book order in at my local bookstore:
The pink ribbon, that ubiquitous emblem of breast cancer awareness, has long been an object of controversy and derision, but the poet and essayist Anne Boyer doesn’t just pull it loose, unfastening its dainty loop; she feeds it through a shredder and lights it on fire, incinerating its remains. “The world is blood pink with respectability politics,” she writes, “as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist.”
Boyer, a single mom in precarious employment circumstances as a teacher, also still young when diagnosed at age 41, has an unusually lethal type of breast cancer that now, 5 years and many extraordinary debilitating treatments later, seems to be absent. From what I gather from the reviews (and here is another one by Sarah Resnick that is intellectually richer and putting the memoir within a larger framework of society’s interaction with cancer,) the book is only partially about the author’s experience on the medical front. Instead it deals with how the world reacts if you disclose the anguish, the fear, the exhaustion, the pain and the losses not within a narrative of heroic survival, sticking to your on personal war story. As Resnick notes:
To linger in the grammar of pain or anger or sorrow, in the bleak syntax of one’s illness, risks summoning “a chorus of people, many of whom have never had cancer, accusing her of ingratitude, saying she is lucky, warning her that her bad attitude might kill her, reminding her she could be dead.” These impositions, Boyer explains, arrive as diktats from a new boss: “the boss that is everyone.” “Self-manage,” they cry from their open-plan workspace. Avoid speaking of death, practice meditation, do yoga. Take care of others. Summon your inner warrior. Smile. Fight! This new boss is doing the bidding of our unjust and unhinged economic system (“white supremacist capitalist patriarchy”): If the onus of responsibility—for recovery, for health, for well-being—falls on the person who is sick, the rest of the world gets a pass, is not accountable for whether a person lives or dies, and if she lives, in what state…..Breast cancer, Boyer insists, cannot be understood as an ahistorical sameness, an uncontrolled division of abnormal cells. It is, rather, a socially and historically constructed nebula, and the women who have it do not suffer from the illness alone. They suffer from the world.
A world, we might add, that faces ever increasing attacks on our ability to stay healthy and avoid carcinogenic exposure: this week we learned about new EPA restrictions on using science to draft and monitor health regulations. Let’s breathe poisonous air, drink poisonous water, have the kids be exposed to lead – as long as industrial profits are not endangered….
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Why was I so much more receptive to the issues raised within the book review than the Politico essay? Partly from admiration for the harder fate of the poet, facing much more radical treatment, who might leave an orphan behind if things didn’t work out, who had to do all this without the network of supporters. More likely, though, because I always thrive on reading about the larger picture – not purely the human interest story, no matter how much I can relate to it, but the anchoring within the system, the world that surrounds us, whose parameters affect us all. Again, the red thread of this week, receptivity to information is so much defined by what is already there. Which leaves me wondering, what kind of information is not getting through to me when it should, caught in the net of preconceived notions or habits.
As William Congreve once said: music can tame the savage breast. It can also tame the sorrow over the absent breast. This is particularly true for music written by someone unwell himself, in this case Beethoven who suffered severely from Inflammatory Bowel Disease and after a bout wrote a string quartet (Opus 132) in 1825 with one movement titled: “Song of thanksgiving to God for recovery from an illness, in the Lydian mode.” It washes over you with anguish and joy, echoing the everlasting longing for recovery.
Photographs today ignore pink ribbons and instead offer multitudes of silvery slivers of hope.
“Some consider death as a landing; others see it as a point of lift-off.” — Darrell Grant, musician, speaking at a Compassion & Choice, Oregon event.
Darrell Grant
The topic of death appeared twice in my view last week. In one instance it concerned death with dignity. It looked like anything but, in the other.
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The cramped office at Street Roots was crowded by news media cameras, various Multnomah County politicians and Tri-County Health Officer Dr. Lewis for this year’s introduction of the Domicile Unknown Report. Published by Multnomah County and Street Roots, the report tracks the annual deaths of those living without housing, with data gathered by Multnomah County Chair Deborah Kafoury, Dr. Lewis and Chief Medical Examiner Kimberly DiLeo.
Media at Street Roots office
For 2018 the statistics were grim – 92 people in Multnomah County died without having an address and that is not necessarily counting all those who passed while admitted to hospitals. 11% died by homicide, a few more than 10% by suicide, and only a smidgen over 50% of the deaths involved drugs or alcohol. The average age for the 22 women among them was 43 years. Cold killed. Disease killed. Houselessness killed.
Death, in thought or in reality, is never far away from those living on the streets, they who face violence, they whose belongings, medications included, are taken away when the garbage trucks sweep in, they who will not take antibiotics prescribed for medical conditions because they fear diarrhea in the absence of public bathrooms or the opportunity to launder clothes. These deaths are not landings, they are crash landings, utterly avoidable like so many crashes if preventative safety measures were available. These must include accessible housing, medical care and debt re -structuring, given that debt (originating from health costs for so many) drove them into an unhoused existence in the first place.
Multnomah County officials and Street Roots staff
Maybe the planned Downtown Behavioral Health Resource Center will diminish the current rate of deaths: a place, in the words of Street Roots’ executive director Kaia Sand, where people can exist, with the spirit of hospitality and the possibility of extra support. Maybe our compassion rather than irritation will lead to individual actions that help combat houselessness. We have that choice.
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Death as a point of lift-off might become the reality for some of the rest of us who live in a state where courageous individuals and organizations have fought long and hard to provide wind in the sails for a gentle(r), pain-free, self-directed take-off.
I had been invited to attend Wednesday’s fall fundraiser of Compassion & Choices by Susan Prior, Senior Manager of Development and Stewardship, who I happened to meet at the house of a former Board member of the organization. I am glad I accepted the invitation from this warm and energetic woman.
Susan Prior with guest
I usually avoid events at the posh Multnomah Athletic Club, with their waste of food during luxurious meals, where people surreptitiously look at their watch (at lunch) or are straining with small-talk (dinner) until it is time to whip out the checkbook. This time was different.
Buffets with small refreshments, sort of like tapas bars, allowed inconspicuous consumption. Time wasn’t wasted either. After a few minutes of meet&greet the program started with one interesting speaker after another.
Former Governor Barbara Roberts with friend Andrea Meyer
My declared preference of “give me the facts already” was immediately met. Indeed, I was facing a lot of new, complex information beyond what I knew about the goals and accomplishments of the organization: improving options for compassionate dying and assuring patients’ rights to make end-of-life choices in accordance with their values and beliefs.
Kim Callinan, the Chief Executive Officer of Compassion & Choices, reiterated the major gains: so far six states have authorized medical aid in dying and 21 national and state medical societies have dropped their opposition to Death-with Dignity legislation. All of us, including those who would never consider aid-in-dying as a possibility due to faith-based or moral reasons, have benefited from the movement. End-of life care has radically changed as a result of the movement, being more devoted to palliative measures, and more inclusive of patients’ wishes.
Kim Callinan
Instead of seeing death as a medicalized event requiring all available methods to prolong life, medicine now eases the process of dying with hospice care, palliative pain management and, most drastically, the possibility of aiding in the passing of terminally ill patients. In some ways this has de-stigmatized what was previously considered suicide, a moral aberration for many. Aid-in-dying shortens a life expected to end soon; for instance, Oregon’s Death with Dignity Act stipulates that patients must have a prognosis of less than six months to live. It is not a choice of life over death, then, but one kind of death rather than another – one that implies agency by the patient and abbreviates incredible suffering.
The cultural shift towards the patient rather than the medical establishment as the decider, has been of seismic proportions. According to Callinan, the next effort will be to reach out African American and Latino populations to share the potential benefits of this movement. Generally, there is the need to spread the word that Advanced Planning and written-out directives to honor ones decision are of utmost importance.
This became clear during the address of Barbara Combs Lee, whose book Finish Strong – Putting YOUR Priorities first at Life’s End was the inspiration for a set of new tools and resource guide to help plan for end-of-life care. You can download a planning guide here, that provides help with assessment of your values, your options, and means of communication with those who will be caring for you. It also outlines provisions for the painful case of having to prepare for the advent of advanced dementia after an Alzheimer or other dementia diagnosis.
I strongly recommend looking at the guide – I found it valuable both for the information it offers about what problems one might face as well as for the solutions that are proposed.
Dan Winter, who serves on the Board of Directors for the ACLU in Oregon, gave a testimonial at the fundraiser that left me impressed as well. It is not everyday that you see someone with the courage to describe the suffering of a parent living, endlessly, with dementia and now, early, having an Alzheimer diagnosis themselves, prompting them to think about end of life care.
Dan Winter in conversation with Paul Meyer, one of the co-founders of the ACLU in Oregon in 1955
I understand the reasoning that you want to preserve what you consider your dignity and not live for endless years in a husk when your former self has long departed in spirit. I also understand that we are dealing here with a medical situation that centers on acts of omission – not providing life-prologuing measures like antibiotic treatment in case of infections, or not forcing food when the patient is refusing to open their mouth or eat anything – rather than the act of commission of providing the means to a clear-minded, consenting adult wishes to ingest to end suffering.
Betsy Moss who was celebrated as Volunteer of the Year
And yet – how do we assess whether the patient really wants to die, when a certain stage of dementia is reached? How do we ensure that those who are proxy decision makers can be trusted? How do we interpret temporary refusal of foods as more than temporary? History has no shortage of slippery-slope abuses – as a German I am exceedingly sensitive to issues of euthanasia. Moreover, a normatively functioning adult often assumes that non-normative forms of existence must be horrible – when we know now from a host of insights from the communities living with (severe) disabilities, that that is not so and rich lives can be led.
I am not saying that an existence with dementia is a rich life, don’t get me wrong. But I am asking about the importance of considering the subjective experience that a patient can no longer communicate, but which might diverge from what we think they must feel. It seems contradictory to put such stress on agency in the process of dying – something I wholeheartedly agree with – and then minimize it when the cognitive tool kit is somehow different from our own.
The Rev. Madison T. Shockley II, who managed to asked for money with humor and graciousness, not easily done.
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I don’t have answers, fully aware that, from my current perspective, I do not wish to live for years with advanced dementia either. I do remember vividly from my volunteering days at a local hospice (now closed) that there are some kinds of pain that cannot be treated no matter how advanced medicine is these days; having an option to escape that kind of pain is a gift for many and does not devalue life, in my opinion. I also remember that the incredible nurses who were surrounded by and easing daily lift-off’s as I now like to think of death, always imbued agency to the timing of death. If the patient died before the family arrived,”they wanted solitude, or they wanted to spare them.” If they died right after the family arrived,”they waited until they were there.” If they died at the end of a long night of being surrounded by one’s loved ones,”they were ready to go and let people go on with their lives.” I think the notion of having some control in the one event every single one of us will never be able to escape is a comforting thought. Rather than focussing on the mechanics of inevitably failing organs, we can attend to the power of our spirit. The lasting dilemma will be when that spirit no longer has words to communicate, and when it is safe to assume it has lifted off before the body could follow.
It is good that there are organizations grappling with these issues and offering advocacy as much as a forum for thought and discussion. We are richer for it.
