Be Very Afraid

IMG_3124Or be at least a little bit afraid: not so afraid that you become paralyzed with fear and not so little afraid that you don’t do practical things to better prepare yourself (and your family) in case of disaster/emergency. Aim for being ‘just right’ afraid.

Public health messaging about ‘appropriate’ disaster preparedness has been a topic of fascination for me since teaching my community health course in New Zealand this past winter. (See my previous ‘New Zealand Postcards’ blog series, especially ‘Disaster Tourism; All Right?’ and ‘Disaster Preparedness: Lions and Tigers and Zombies and Earthquakes, Oh My!’) When I returned to Seattle in April I had resolved to practice what I preached in this regard and make a disaster preparedness kit for our home. Seven months later I’ve finally put one together.

This cute little red ‘lunchbox’ disaster/emergency preparedness pack in the photo is one that got delivered to my university office this past week. A one-person 72-hour survival kit. Inside it has pouches of water, high-energy food bars, a mini first aid kit, a whistle, a flashlight/extra batteries, hand sanitizer, an emergency survival blanket, maxi pads, hand warmers, and a poncho (this is Seattle after all and we like our rain gear). The CDC Emergency Preparedness and Response website and FEMA’s ‘Ready’ website  recommend having smaller grab-and-go personal disaster preparedness kits like this one at work/school, in your car, or other places where you spend a lot of time. They recommend having a larger ‘family-sized’ disaster preparedness kit at home and they provide lists of recommended items for the kits. Some of the recommended items on the two lists are the same (like water and food), but many of the items on the lists differ. An interesting but largely unsurprising fact. I prefer the CDC list. The American Red Cross survival kit list on their website seems to follow the CDC list and both seem to have taken health literacy factors into account.

Through the process of researching and putting together a household disaster/emergency preparedness kit, I’ve realized the health and safety advantages of having camping and hiking as hobbies. Swiss Army knife. Check. Tent. Check. Portable water filtration kit plus iodine water purification tablets. Check. Sleeping bags. Check. Portable first aid kit with hand sanitizer. Check. Toilet paper and small plastic shovel for digging a latrine. Check. Rain poncho. Check. Hand-cranked and solar-powered flashlight and NOAA weather radio. Check.  All stored in one easily-accessible place at home. Check. The only items I needed to add to my preexisting camping supplies were cans of food and water jugs. I now having a home disaster preparedness kit. In Seattle, if you could chose an ideal place to be when disaster strikes, I think it would be inside REI’s flagship store downtown.

I’ve realized that even basic home disaster/emergency preparedness is not an equal opportunity endeavor–it is mainly available to people with the resources to: 1) research and figure out what a disaster kit should include, 2) purchase the items (or purchase a ready-made kit), and 3) have a home in which to store the disaster/emergency preparedness kit.

 

 

Imbecile, Idiot, Cretin, Funny-Looking Kid

14866775264_dfcefee472_hIdiot, cretin, feeble-minded, moron, mongoloid, retarded, funny-looking kid: all accepted medical terms at different times in history. More recently, the accepted terms are mental retardation, intellectual, or developmental disabilities. People in pediatrics sometimes use FLK for “funny looking kid” to describe a baby or toddler whose face and head “just don’t look right,” but who don’t have an identifiable genetic disorder. I remember the first time I encountered FLK on a child’s medical chart in nursing school. I was shocked when my nursing instructor told me what it stood for. I was even more shocked that she didn’t find the term offensive. FLK seems to be a throwback to phrenology—that pseudoscience of belief that low foreheads and bumps on the skull can foretell the criminal and devious propensities of individuals.

I had relatives with mental illness and mental retardation. My father’s father and brother were tucked far away in the southern Appalachians of Tennessee: our family’s living skeletons in the closet. I was told that my Uncle Charles was retarded, and that my grandmother was convinced it was because she’d fallen down a flight of stairs when she was pregnant. My maternal great-grandmother raised Uncle Charles on her cotton plantation in rural Georgia, so Charles had a thick Southern drawl and was the most openly racist of any of my relatives. He also had a serious speech impediment, talking as if he had a partially paralyzed mouth. He laughed loudly at his own jokes, startling me by suddenly reaching over and tickling me under the chin or slapping me on the arm. As a child he frightened me; as a young adult he embarrassed me. By then he lived with my grandmother and drove a delivery truck for a cousin’s florist. With savant-like abilities in math, he had been tested at Emory hospital at age ten and assigned an IQ of seventy. He was considered feeble-minded, trainable, and partially educable.

In my childhood, we went to my grandmother’s house in Tennessee only at Easter, as if this were part of our family’s annual pilgrimage of penance, death, and resurrection. Grandmother’s house smelled of sick-sweet Easter lilies, slimy collard greens, and Cimmerian dust from the dirt-floor basement’s coal-piles. My grandfather had a mask-like face and lay in a tall four-posted bed staring at the ceiling. He talked infrequently and when he did, it was in staccato monosyllables. Poorly controlled diabetes and bipolar disorder had left him disabled. He frightened me more than Uncle Charles did. Grandfather was a lawyer but had lost his temper in court so many times he was relegated to library legal research. After he lost that job in the Great Depression, he spent his days playing chess at the YMCA, while my loquacious grandmother sold World Books door-to-door. This was the oft-repeated family story.

Southerners are often stereotyped as inbred imbeciles. My Northern-born mother would tell me stories of my father’s family when he wasn’t around—about the mental retardation and mental illness that my father had been able to transcend by escaping to go to graduate school in New York City. Once there, my father was required to take speech therapy to get rid of his speech impediment: his Southern twang. Both of my parents continuously corrected my speech, determined to prevent me from developing a marked Southern accent. My mother examined the official IQ and academic test scores of all four of her children. With every “ya’ll” that slipped out and every “B” obtained, I felt increasingly marked by the Southern blight. It wasn’t until much later in life, while caring for my elderly mother dying of cancer, that she informed me I was related to Varina Davis, First Lady of the Confederate States of America. My paternal great-great grandmother from the Georgia cotton plantation was Varina’s first cousin or something of the sort. I have not found an adequate place for that fact in my history.

When Words Were Poems

IMG_3604-a

Photo: (c) Lorraine Healy–an amazing Argentinian poet, writer, and photographer living and working on Whidby Island. Lorraine is the first person ever to have received a Green Card in the U.S. on the basis of being a poet.

I had the great pleasure of meeting, working, and living with Lorraine recently at Hedgebrook, a Gloria Steinem-spirited place of ‘Women Authoring Change.’ I was at Hedgebrook working on my Soul Stories collection of poetry and prose exploring the boundaries of narrative within health and healing in the context of trauma and homelessness. Surrounded by poets and the genius loci of Whidby Island (including of Double Bluff beach in the photo–where I walked almost every day), as well as being cut off from the time/mind suck of the internet, ‘poetry happened’ and this is one poem that came to me. It is, of course, a nod to Ralph Waldo Emerson’s “Every word was once a poem.” In the poem I probe the places ‘where narrative ends’ or ‘where narrative is not possible.’

There are human experiences beyond the reach of narrative. These are dimensions of experience that are what psychologist Donnel Stern calls ‘implicit knowing’ or the ‘unthought known’: they are there but not there; there but not available for reflective thought or verbalization. Yet these experiences of implicit knowing can be formulated, conveyed, shared and communicated through metaphor, poetry, art, photography, and gesture.

Embracing the times and places where narrative ends and poetry happens is not for the faint-of-heart. It is akin to the feeling of standing on the vanishing strip of shifting sand at the foot of a fast-eroding beach bluff.

When Words Were Poems (a choka–a form of waka/Japanese poetry)

When words were poems

our body’s understanding

was written in flesh;

a repose, a prayer whispered

in answer to awe.

Round marbled babbles sang praise,

danced the sun on waves.

Now each word is a poem,

draw knowledge softer,

suckle life from all splinters,

embrace shadows beyond words.

Narrative Medicine Collection

product_thumbnail.phpHere are a few of my current favorite narrative medicine/medical humanities things:

  • Heart Murmurs: What Patients Teach Their Doctors (UC Medical Humanities Press, 2014). This new collection of personal narratives by physicians, edited by my colleague Sharon Dobie, MD, a family medicine doctor who teaches and practices relationship centered care. In these essays Dr. Dobie and thirty-five other physicians explore lessons they’ve learned from patients.
  • Those whacky and wonderful Brits have a much better health care system than we do, and they have this wonderful new (creative) collection (is it a book? is it a collage?) on medical humanities. Published by the Wellcome Collection, Where Does It Hurt? The New World of the Medical Humanities is both entertaining and thought-provoking. (While you’re at it, spend some time browsing their website for fun quizzes, interactive educational games, videos, and more). Here’s what they say abut the book:
    “What does it mean to be well? Or ill? And who, apart from you, really knows which is which? Contemporary definitions of medicine and clinical practice occupy just one small corner of a vast field of beliefs, superstitions, cultures and practices across which human beings have always roamed in the search to keep themselves, and others, feeling well.The label ‘medical humanities’ is the best effort we’ve made so far to define the fence that encloses that very large field; recognising that it’s a space in which artists, poets, historians, film-makers, comedians and cartoonists – in fact every one of us – has as much right to explore as any humanities-schooled or clinically trained professional. This book is a walk through that field, a celebration of its rich diversity, a dip into some of the conversations that are going on within it, an attempt to get it in perspective – and an invitation to you to join the conversation yourself.”
  • The always friendly folks in the middle of cornfields in Iowa (University of Iowa) put on a terrific annual narrative medicine conference: The Examined Life Conference. They just announced that a keynote speaker for their upcoming conference (April 16-18, 2015) is poet Jimmy Santiago Baca. His memoir A Place To Stand (Grove Press, 2002) was made into a documentary released last month.

Ebola: Not In My Backyard

ebola-suit1Until very recently in the United States the general feeling among most people (and among most news reports) was that the catastrophic Ebola epidemic was only a problem ‘over there in the poorest countries of Africa–all of those uneducated Africans who can’t even keep their food from getting contaminated by bat droppings.’ This summer, we were happily dousing ourselves with buckets of ice water in the (dare I say ‘silly and oh so contagious social media’ hype) of the ALS Ice Bucket Challenge. (see my previous blog post: ‘Ice Bucket Challenge for Ebola‘ 8-26-14 for additional perspective on this in light of the global health burden of disease.) At the time that I wrote that blog post we had not yet had any patients tested/confirmed with Ebola in our country. Now, of course, we have multiple confirmed cases in the U.S., including two young nurses who had cared for a patient with Ebola in a Dallas, Texas hospital.

This morning in my community health nursing class of 150 students, I asked how many of them had had any training or preparation or discussion of Ebola in their clinical rotations. Only one student raised her hand and she said that was training through her job at a hospital (presumably Harborview Medical Center in Seattle which supposedly has done a good job of Ebola education and preparedness for its employees). The majority of students said they had been asked by friends or family members for information on Ebola. I encouraged them all to read the excellent training materials for the general public and for health care providers on the CDC website–and to ask for preparedness training in their clinical sites. I also encouraged students to be attuned to subtle and not so subtle racism in news coverage and general conversations about Ebola. Even infographics about Ebola on the CDC website depict only impoverished rural African people with Ebola, in one case showing a man defecating on the ground.

The fact that it is two hospital nurses who are the first confirmed Ebola cases to be contracted in the U.S. should come as no surprise to anyone who knows and loves nurses or who has spent any time in a hospital. Nurses are the front-line, down-and-dirty direct patient care providers. These two nurses were following current (at the time–they have been updated today) Ebola infection control procedures. And whereas the latest nurse with confirmed Ebola, Amber Joy Vinson, was first reported as having breached CDC protocol and flown on a commercial plane while she had a fever, CDC officials are now confirming that she first phoned them when she had a fever and was due to fly: “I don’t think we actually said she could fly, but we didn’t tell her she couldn’t fly,” CDC director Dr. Thomas R. Freiden is quoted as saying. “She called us, (…) I really think this one is on us.” (NYTNew Ebola Case Confirmed, U.S. Vows Vigilance’ by Manny Fernandez and Jack Healy, 10-15-14.)

It is always ironic that it takes ‘big scary disease’ epidemics like Ebola to remind us all of: 1) how connected we are to everyone else in the world–their problems are literally our problem, 2) the importance of sustaining a robust public health infrastructure, and 3) how vital nurses are to our health care system.

 

A Practical Man and Modern Medicine: The Ending

IMG_2700 - Version 2My father died this morning. He died peacefully in his bed at home surrounded by family members, trusted caregivers, and my late mother’s artwork. This photo, which I took a few weeks ago, shows my father ‘getting his daily exercise’ doing laps inside his house using his walker, under the watchful eye of my mother (the painting is her self-portrait about her own heart disease). My father died from the effects of congestive heart failure. When he died, my father wasn’t exactly wearing his boots and gardening gloves, but very close to it. Our family harvested sweet potatoes yesterday from my father’s backyard garden.

Four years ago, when I began this Medical Margins blog, my first post was about my father’s (and our family’s) struggle to negotiate a dignified and peaceful home death for him amidst the Kafkaesque nightmare of our health care system. (See “A Practical Man and Modern Medicine” 9-26-10). I also wrote an essay about my slightly Quixotic efforts to be my father’s cross-country patient advocate and health care proxy through his countless hospitalizations and transfers in and out of nursing homes and home heath care. (See “Home Death” in The Johns Hopkins Public Health Magazine, Special Issue 2013).

During his last hospitalization (a bounce-back hospitalization after only two days at home and before hospice was finally ordered), my father was moved to six different hospital rooms on the same cardiac floor in less than a week. He became more and more distressed and disoriented with each move. He was being treated with three different antibiotics (two IV) for two different hospital-acquired infections. This was despite the fact that my father had clearly documented Advance Directives requesting none of these unnecessary ‘heroic’ measures. It took a direct plea from me to the head of cardiology to have the antibiotics discontinued and my father released to home hospice. That was only three days ago. His (nonprofit, religious-based) home hospice was terrific.

I’ve realized during this final surreal (is ‘Woolfian’ a word? it should be–it has felt very much like her writing in The Waves) month, that we have created a Frankenstein monster: ‘the creature’ or ‘the wretch’ of our health care system (especially the hospital). I’ve realized that my frustration and anger over my father’s end-of-life care is not as simple as displaced grief over losing my father. My anger can not be directed at any one physician or nurse or hospital. Rather, my anger is really dismay (bordering on despair) that I–that all of us– can have been a part of the maintenance of such a sad and broken wretch. Apart from putting all of our hospitals and nursing homes on (the melting) ice flows along with Frankenstein’s monster, what can we do to reform and redeem this creature we have created?

To the Reverend John Edward Ensign, my force-of-nature father: rest in peace.

______________________________

*The Institute of Medicine just released a fascinating study addressing this problem and question: Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, 9-17, 2014.

** The NYT recently published a Pulitzer-worthy article by Nina Bernstein: “Fighting to Honor a Father’s Last Wish: To Die at Home” (9-25, 2014).

 

Simple (and Not So Simple) Ways to Help the Homeless

  • IMG_1230 - Version 2Respond with a smile and kind words—even if it is “no—sorry” when you’re asked for a handout for coffee, a meal, or spare change. There’s nothing worse than for a person to be ignored–unless it is for them to be ridiculed, called names, told to ‘just get a job,’ or to become the victim of physical violence. Speak up if you witness someone harassing or demeaning someone who appears to be experiencing homelessness. (See ‘hate crimes and homelessness’ below.)
  • Carry fast food restaurant certificates to give to the homeless when they ask for food.
  • Support and buy Real Change or whatever your local poverty and homelessness newspaper is. Take the time to talk with and get to know the vendor.
  • Support an agency that provides direct services to the homeless, especially agencies that also work on upstream solutions to preventing homelessness, such as low income housing or job training programs. An example of upstream services is Habitat for Humanity whose vision ‘is a world where everyone has a decent place to live.’ Not a shabby vision to have and to support.
  • Become informed and become an advocate for local community solutions to homelessness and poverty, as well as state, national, and international ones. Consider joining advocacy organizations such as the excellent National Low Income Housing Coalition.

Hate Crimes and Homelessness: There is a well-documented relationship between criminalizing homelessness (such as municipal laws against camping or panhandling) and ‘hate crimes’/violence against homeless people. Although homeless status is not currently a protected class under federal hate crime laws, there are local, state, and federal efforts to increase protection of homeless people from being victims of bias and opportunity hate crimes. People experiencing literal homelessness are very visible and vulnerable to being victims of targeted crime.

The National Coalition for the Homeless collects data on violence against homeless people. In their latest report (June 2014), Vulnerable to Hate: A Survey of Hate Crimes Against Homeless People in 2013, they found that documented cases are rising (perhaps partially–but not completely–due to better surveillance and recording efforts. Such crimes remain significantly under-reported.) This is an excellent, balanced, and disturbing report. It includes detailed case studies of victims of targeted violent hate crimes.

Last year there were 109 documented attacks on homeless people, resulting in 18 deaths. There were five documented cases of police brutality of homeless people. Over half of all cases of violence against the homeless were in California and Florida. Nationally, the vast majority of perpetrators were teenage and young adult men. In the report, they call for federal Homeless Hate Crime legislation, better reporting of homeless hate crimes, as well as education/prevention efforts such as education (enlightenment) in high schools and police departments.

Resources to Learn More About Homelessness Issues

Note: This series of blog posts on health and homelessness is based on my unpublished* book manuscript Catching Homelessness. It is the story of my experiences with homelessness, both as a nurse practitioner working with homeless people, and as a homeless person. The stories in Catching Homelessness are about events that have happened to me through my work with homeless people. The stories are all factual in that they actually happened. My perception of them at the time of the events and my memories of them inform the stories. Many of my interactions with people in these stories were within an ongoing professional relationship. Since I recount stories of specific patients I worked with, out of ethical and legal obligations, I have altered some biographical details and changed names in order to protect their identities. I have not changed the names of co-workers and friends except where indicated as such in the text.

I have kept detailed journals, both personal and work-related, throughout my life. These were invaluable resources for writing this book. Because I have a background and training in anthropology, my work-related journals were written as expanded field notes. In my journals I recorded patient stories, direct quotes, profiles and personality quirks of co-workers, my reflections on my actions and on events with which I was involved. I kept copies of my detailed monthly and year-end clinic statistics, narrative reports, and letters that I submitted to the Cross-Over Clinic Board of Directors, for whom I worked; these became sources of information for sections of this book. I also drew upon archived newspaper articles, mainly from The Richmond Times-Dispatch, the leading newspaper in Richmond at the time, and currently the city’s only major newspaper. For some chapters, I relied on interviews with people working with homeless people in Richmond, site visits, and reports (past and present) on homelessness in Richmond, in Virginia, as well as nationally.

The following books and articles were the ones that I referred to the most, or which most influenced my thinking as I wrote Catching Homelessness.

  • Zygmunt Bauman. Wasted Lives: Modernity and Its Outcasts. (Polity Press: Cambridge), 2004.
  • Ted Conover. Rolling Nowhere: Riding the Rails with America’s Hoboes. (Vintage Press: New York), 2001.
  • Kim Hopper. “Homelessness Old and New: The Matter of Definition.” In, Understanding Homelessness: new Policy and Research Perspectives, Dennis P. Culhane and Steven P. Hornburg eds., (Fannie Mae Foundation, 1997).
  • Kim Hopper. Reckoning With Homelessness. (Cornell University Press: Ithaca), 2003.
  • Joseph B. Ingle Last Rights: 13 Fatal Encounters with the State’s Justice. (Abingdon Press: Nashville). 1990.
  • Jonathan Kozol. Rachel and Her Children: Homeless Families in America. (Three Rivers Press: New York), 1988.
  • Elliot Liebow. Tell Them Who I Am: The Lives of Homeless Women. (Penguin: New York), 1993.
  • Elliot Liebow. Tally’s Corner: A Study of Negro Streetcorner Men. (Rowman and Littlefield Publishers: Lanham, MD), 2003.
  • Paul A. Lombard. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck vs Bell. (JHU Press, Baltimore), 2008.
  • George Orwell. Down and Out in Paris and London. (Harcourt: New York), 1933.
  • Janet Poppendieck. Sweet Charity?: Emergency Food and the End of Entitlement. (Viking: New York), 1998.
  • Christopher Silver, Twentieth-Century Richmond: Planning, Politics, and Race. (The University of Tennessee Press: Knoxville). 1984.

Thanks to the organizations that supported my four years of research and writing of Catching Homelessness: 4Culture, Jack Straw Writers Program, and Squaw Valley Community of Writers. I extend my thanks to the wonderfully supportive librarians in my life, Lisa Oberg and Joanne Rich, of the University of Washington Health Science Library in Seattle. Many thanks to Wendy Call, Waverly Fitzgerald, George Estreich, Drs. Barbara McGrath, Stephen Bezruchka, and Sheila Crowley for reading and providing constructive feedback on earlier drafts. Thanks also to the members of my writing group, The Shipping Group, and to Karen Maeda Allman of the Elliott Bay Book Company in Seattle, for providing writing space and encouragement. A special thanks goes to my husband, Peter Kahn, my son, Jonathan Bowdler, and my daughter, Margaret Kahn, for all their love and support throughout the process of bringing this writing to life.

*Most all of Catching Homelessness has appeared in print in various forms and venues (including in this blog series):

 Some books are meant to be written, but not necessarily to be published. Catching Homelessness is such a book. I’ve moved on to writing my next book, Soul Stories: Health and Healing Through Homelessness. I thank Hedgebrook for the opportunity (starting this next week) for the ‘radical hospitality’ of protected time, space (my own hobbit-house/ ‘Owl’ cottage), food!, and nurturing community of women writers necessary to forge ahead with writing Soul Stories.