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:
  • 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 ( 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?