Category Archives: Uncategorized

My son, Matt, needs a bone marrow transplant.  If you or anyone you know will consider being tested as a possible donor, please see this site, and you can find where to be tested.  He is biracial, and we know that African Americans have a much lower likelihood of finding a match.  Please reach out to those you know.

What I should add:  You are not entering specifically to be Matt’s match, but joining the registry does increase his chances. When you register you are making a commitment to donate to anyone if you are found to be a match.  Your name will stay in the registry until you are 61, though you can remove it at any time.

Thank you.

12 days left for Sylvie Mae Baldwin’s campaign

SCSrevisionDecPostAnd here is what Sylvie Mae Badwin has been doing:

“February was an amazing month filled with prep for skinny crazy small and the run of Edward Tulane at South Coast Rep in Costa Mesa, CA.

In the solo show world…

  • I applied to take skinny crazy small to the 2015 National Eating Disorder Association Conference in San Diego. They are just beginning to review proposals for presentation, so I am keeping my fingers crossed!
  • The Indiegogo campaign is plugging away. We are 80% of the way to our goal, with just a little over two weeks to go. If you haven’t checked out our page or know someone who might be interested in donating please take a peek at: https://www.indiegogo.com/projects/skinny-crazy-small
  • My team and I welcomed two interns to the project. Rosin and Marie will be helping us with Marketing and Community Outreach, respectively. We could not be more thrilled!

This week I head to PlayFest 19 at Key City Public Theatre in Port Townsend, WA where skinny crazy small will undergo intense workshop before its debut in May (http://www.keycitypublictheatre.org/ptplayfest.htm). I have been revising up a storm. While I was in Costa Mesa I had the wonderful opportunity to get to know the company of Kneehigh’s Tristan & Yseult.  This troop of musicians, actors, and dancers from Cornwall inspired and encouraged me to think of all my theatrical work as a more multisensory and playful experience. I have taken their words to heart and am approaching skinny crazy small with a bit more fun and grit than before!

My time at South Coast was more than I could have ever asked for. We were a small company of four in Edward Tulane – a touching play about the adventures of a china rabbit who learns how to love. I played “The Traveler” who narrates the play as well as assumes the roles of Pellegrina (a trickster grandmother), Jack (a hobo daydreaming of his family), and Lucius Clark (a master doll maker/mender). Each actor in the play also played an instrument onstage, so my trusty viola enjoyed many a jam session and performance! The kids loved “the violin,” as they called it…and I loved having the opportunity to introduce them to American folk tunes.”

More about skinny crazy small

Only a couple more weeks to donate to Sylvie Mae Baldwin’s skinny crazy small. Go here !  And now more about the playwright and actress, in her words:

From my eleventh birthday until the year I turned nineteen, I woke up every morning terrified – terrified that I was going to die of anorexia nervosa. This wasn’t an entirely illogical fear. I had been diagnosed with the disease the summer before I entered seventh grade. However, thanks to the tireless efforts of my parents, I was quickly weight restored and deemed “healthy” once again.

So, why was I frightened? I’ll tell you why. Anorexia is deadly. Of all mental illnesses, it claims the most deaths each year – roughly half due to suicide and the other half due to heart failure. Anorexia is particularly vicious, because the disorder compels individuals to avoid the only effective treatment. Imagine if contracting cancer drove a person to avoid chemotherapy at all costs – that is how anorexia works, but with food.

As a young girl I feared that the illness would sneak up on me once again. I felt powerless over its sneaky and coercive tactics. And, despite many therapy sessions and doctor visits, my own unwillingness to talk about my problems allowed disordered thoughts to plague me even after I appeared “recovered” from anorexia.

When I entered college, my restrictive eating habits resurfaced and spiraled out of control. The loud, boisterous voice of anorexia pounded in my ears: “Keep cutting calories! Exercise! Stay healthy! You know what happens to people who eat fat – they become ugly, unhappy, and unloved.” I would lay awake on my hard dormitory bed, counting my faint, slow heartbeats. I was confused – entirely fixated on my health and happiness, yet the captive of an illness that made me take terrible care of myself and feel desperately despondent.

It was a Friday night in early October when the realization hit me. My whole body was tingling and shaky. “I am dying. Anorexia is killing me,” I told myself.  “My own worst nightmare has become my reality.” I placed one of my hands on the wall beside my bed, the cool surface steadying my uneven pulse. I resolved not to sleep. I couldn’t. I knew that if I closed my eyes, if I drifted off, I might never wake up again. Instead, I ate – one protein bar after another, from a small stash of emergency provisions I had stored underneath my bed. I consumed the bars tentatively, not voraciously, not with any sense of joy, pleasure, or ease, but because I knew I had to.

When I reflect back on that night in October, the night I became convinced that I must and could recover from my eating disorder once and for all, I am sometimes overwhelmed with a feeling of total idiocy. Why did I ever restrict my eating? Why did anorexia consume my life and my thoughts for so many years when all I had to do was make the decision that I would eat fully and live fully?

The reality is that on that fall night, I reached a critical moment in my young life. I had to choose between life and death, between eating or anorexia. For the first time, my choice seemed simple, concrete, and clear. My eating disorder had spent years convincing me it was helpful, fooling me into the belief that excessive calorie restriction was my key to happiness and success. But I finally saw anorexia for what it was, nothing more than death. Death repackaged to look like a shiny can of diet soda and a single cup of non-fat yogurt.

If we are lucky, life is long. Seconds become minutes, minutes become hours, hours become days, and days become years. However, it is the moments that count, the moments that shape our lives and decide our fate. All it took was a moment – a moment, perfectly situated between life and death – for me to decide that anorexia would no longer rule my life. That moment, when I decided to eat, lasted no more than a heartbeat. It was short, a flash, the blink of an eye. However, that moment gave me life – years of life, for which I am eternally grateful.

Today, I no longer fear that anorexia will kill me. I no longer feel powerless against its tactics or consumed by disordered thoughts. Those days are behind me, thanks to the power of a single moment. A moment of clarity in which I realized I had to eat or I would die, a moment in which I chose life.

To be clear

Some think they missed not getting here yet, like it was over 11/30/13.  Nope.  NaBloPoMO got me started.  This blog is open and ongoing.  It is unlikely that I will post daily, but know I will post.  So hang around, comment on prior posts, ask about things you want me to blog about, and keep the stories going.

The US Health Care System

From Aaron Carroll from JAMA

“From JAMA. I reformatted the abstract, and broke it up into paragraphs to make it easier to read:

Health care in the United States includes a vast array of complex interrelationships among those who receive, provide, and finance care. In this article, publicly available data were used to identify trends in health care, principally from 1980 to 2011, in the source and use of funds (“economic anatomy”), the people receiving and organizations providing care, and the resulting value created and health outcomes.

In 2011, US health care employed 15.7% of the workforce, with expenditures of $2.7 trillion, doubling since 1980 as a percentage of US gross domestic product (GDP) to 17.9%. Yearly growth has decreased since 1970, especially since 2002, but, at 3% per year, exceeds any other industry and GDP overall.

Government funding increased from 31.1% in 1980 to 42.3% in 2011. Despite the increases in resources devoted to health care, multiple health metrics, including life expectancy at birth and survival with many diseases, shows the United States trailing peer nations. The findings from this analysis contradict several common assumptions. Since 2000,

  1. price (especially of hospital charges [+4.2%/y], professional services [3.6%/y], drugs and devices [+4.0%/y], and administrative costs [+5.6%/y]), not demand for services or aging of the population, produced 91% of cost increases;
  2. personal out-of-pocket spending on insurance premiums and co-payments have declined from 23% to 11%; and
  3. chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.

Three factors have produced the most change:

  1. consolidation, with fewer general hospitals and more single-specialty hospitals and physician groups, producing financial concentration in health systems, insurers, pharmacies, and benefit managers;
  2. information technology, in which investment has occurred but value is elusive; and
  3. the patient as consumer, whereby influence is sought outside traditional channels, using social media, informal networks, new public sources of information, and self-management software.

These forces create tension among patient aims for choice, personal care, and attention; physician aims for professionalism and autonomy; and public and private payer aims for aggregate economic value across large populations. Measurements of cost and outcome (applied to groups) are supplanting individuals’ preferences. Clinicians increasingly are expected to substitute social and economic goals for the needs of a single patient. These contradictory forces are difficult to reconcile, creating risk of growing instability and political tensions. A national conversation, guided by the best data and information, aimed at explicit understanding of choices, tradeoffs, and expectations, using broader definitions of health and value, is needed.

My frustration? That anyone treats any of this as news. At some point we need to stop diagnosing the problem and start doing something about it.”

And then factor in the uninsured, the health disparities, and social determinants.  Are we having the wrong conversations? Are they even conversations?

NaBloPoMo

     The blogging world has NaBloPoMo or National Blog Post Month.  According to this site, it started as a joke.  It is now every month with November being the big month in conjunction with NaNoWriMo.  Sponsored by BlogHer and WordPress, bloggers have until 11/5/13 to sign up and commit to a post a day.  There are almost 1800signed up at this time.

     Are you wondering what this has to do with you? Well, I apologize for the 30 emails you will get telling you I have a new post and for the fact that writing one a day will probably mean that the moments I talk about are going to be all over the place.

     If you have any particular moments you want to share, pass them on and I will post them, well maybe I will.

Inspiration

Image

Annie, Mieko, Claire, me, Elin and Olumide (in front) on a break from our literary mission, after watching one of the presidential debates

Do you have an interest in writers you may not know?  if you want to support women writers, take a few moments and read about these women, and buy and support their work.

Each of them was at Hedgebrook for at least a week overlapping with me in the Fall of 2012.  They are brilliant, funny, insightful and very able to put all of that to paper in poetry, drama, essay, fiction, memoir, and science writing.  Humbled in the presence of their talent and enriched by their generosity, I hope my work is informed by their wisdom.

Olumide Poopola (poetry, drama, fiction)

Annie Holmes (political history, memoir, fiction)

Donna Hemans (fiction)

 Simha Evan Stubblefield

Claire Dederer  (essay and memoir)

Mieko  Ouchi (drama)

Karen Joy Fowler (fiction)

Elin Kelsey (environmental science)

And another plug for Hedgebrook Cookbook: celebrating radical hospitality

heading home

Three residents heading home to their cottages after dinner, their baskets full with breakfast, lunch, and treats for the next day

 

Radical Hospitality

What would epitomize “radical hospitality” to you?Image

Some people asked about the trees in the header.  They are at the corner of Double Bluff Road and Milliman on Whidbey Island in Washington State and these trees take me back to last year, taking the picture on a bike ride during a 3-week residency at Hedgebrook, a woman’s writers’ retreat. Picture 6 cottages spread out on a 40-acre property of old growth forest, meadows, gardens, and a farmhouse and barn.  Each of the six cabins houses one woman writer who was offered a residency of two to six weeks. Fir, which was mine is the pictured one. The women who come to Hedgebrook are from all over the world and the founders wanted women from dense urban areas to not feel too alone or frightened in the woods. Designed with exquisite intentionality, each handcrafted cottage is in view of one other cottage.

Each has a work area, a cozy chair with blanket and light for reading, a wood stove (and unlimited wood and kindling cut to size for the residents), a small kitchen and implements for one.  Each has a half bath and a sleeping loft up a ladder with an arched window that opens to all the night sounds of the forest.  The bathhouse, in a central clearing, has two shower rooms, a claw foot tub room, and a washer and dryer.  The founder, Nancy Nordoff believed in the power of nature to inspire, in the importance of women having a room of their own, and of the need for more women’s voices to come forward in print.

Imagine getting up each morning, building a fire, fixing breakfast from the food foraged in the farm house kitchen, making a pot of French press coffee or putting the kettle on the wood stove for tea and settling in to write, undisturbed by anything other than your own thoughts.  The night before you brought up your foraged food and a lunch, specially prepared by last night’s chef, ready to heat and eat when you are ready.  More time to write fills the afternoon, or maybe you will include a walk, bike ride, or reading and researching.  Then it is dinner, at the farmhouse with the other 5 residents and the chef.  And oh the food: most often local, beautifully prepared, and delicious.  Check out (and buy) Hedgebrook Cookbook; Celebrating Radical Hospitality.  Conversations over dinner are far-reaching and rich with reading suggestions, thoughts about writing, and life.  After dinner you might go back to your cabin to work more, read, spend the evening in continued solitude, or reconvene with the other five residents at one person’s cabin to share readings from everyone’s work.

The place, the women, the nurturing by the staff…what an idyllic and protracted moment.   Can you imagine radical hospitality now?

Shifting Perspective

At any given moment we stand somewhere.  We live, work, and play connected (or disconnected) from where we stand.  And we create the narratives about our lives.  I often wonder how often we stop in a moment and look around to actually see where we are, to understand the stories, connections, and shared stories being created in that moment.

I have been thinking about margins with personal lens shift.  What are the ways that being in the margins or of the margins or working in the margins impacts you?

In much of my adult work life I have tried to keep an eye on social justice, ways to be involved in initiatives that increase access and equity. My work started in the Jim Crow era, in Virginia in college in a town where the schools were not yet integrated.  We formed a student group to work with the NAACP and the town housing authority to begin discussing strategies to approach the housing discrimination. We worked with the African American schools to tutor kids in preparation for integration. Later as a social policy planner in California, working with the mayors within a county to forecast further employment growth, we defined fields where training programs could be intelligently planned and implemented. Subsequently as a physician I worked first in a community health center and then on a medical school faculty with programs to nurture students to make career choices serving the underserved.

Last fall I went to a conference called Grace in the Margins.  It was put on by the Intercommunity Peace and Justice Center (http://www.ipjc.org), a group formed by a number of Roman Catholic religious communities with a mission to work for “justice in the church and world.”  I know individuals within these communities and of their peace work and their work for equity and justice in many areas:  housing, immigration, and health care.  My assumption was the conference would be about work we could do for people marginalized in our society to bring about more social justice.

This was definitely a focus.  However, and this blog is not about the Catholic Church, there were many subthemes that day. The several thousand of us were seated at round tables of about ten participants, mostly women.  At my table when we shared why we were there and our hopes for the conference, it became clear to me that all but a couple of us felt marginalized as women in their church.

This moment in history  coincided with a recent history where the roles of women within congregations were being restrained from expanding.   Most recently the Vatican sought to exert more control over and to modify the statements and activities of a number of women’s religious communities, including those of the IPJC. (http://www.usccb.org/loader.cfm?csModule=security/getfile&pageid=55544)  Hmm, that marginalization seems to me to true, just one with which I did not strongly identify as a personal issue and one I figured would not change.

My little table also had a friend who is African American who spoke to racial inequity. A keynote speaker, Valarie Kaur (http://valariekaur.com), talked of a key moment in her life when a Sikh man was murdered in a hate crime in the aftermath of 9-11-01.  She left college to talk with and film Americans and what happened in their lives, who was “us” and who was “them,” producing Divided We Fall (http://www.imdb.com/title/tt0867599/)

Those moments at that conference did not shift my views about my social responsibility, yet they did enlarge my understanding of margins.  When have I been in a margin?  What has it meant?  Does it matter whether I perceived those times as marginalized or not? Have I spoken from within the margin and to whom?  The center or the margins or both?  Which is more effective (that is if I am not just speaking into a non listening void for the sake of hearing my own voice).  What does it mean if I see  myself standing not in the margins, yet I speak to the margins?

What about you?