Tuesday, July 15, 2014

2014 Medicine X: Communicating the Experience of Illness in the Digital Age

Time on the Internet can often be measured by the millisecond. We bemoan the shallowness,brevity and sensationalism of topics that seek to capture our momentary attention on our news feeds. Yet in the early part of 2014, a controversy hit the Internet with the intensity of a meteor and then instead of rapidly burning out, gained in intensity and continued discussion. The controversy became known on the Twittersphere as #Kellergate and revolved around separate columns written by former New York Times editor, Bill Keller and his wife, Guardian columnist, Emma Keller opining on blogger Lisa Bonchek Adams' frequent use of social media as a platform for chronicling and sharing her experience of living with progressive, incurable cancer. Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness. Attempting to add some insight to the phenomenon of illness blogging, I wrote a piece in early 2014 for WBUR's Cognoscenti site: Memo to Bill Keller: This is Why Patients Blog About Illness

Now more than half a year later, the discussion has stepped away from the specifics of the Keller/Adams controversy and has entered into a broader conversation on the issues of disclosure, community, isolation and connection. The international conference, Medicine X, held annually at Stanford University, has deemed this an important topic for the upcoming 2014 conference and has invited me and several colleagues to present a panel discussion entitled: Communicating the Experience of Illness in the Digital Age: Reaching Beyond the Keller/Adams Controversy.  I am honored to be the moderator of this panel of amazing thoughtleaders, Susannah Fox, Meredith Gould, and Colleen Young, all pioneers in the fields of peer-to peer-health, online communities, community management and the evolution of communicating the  experience of illness in the digital space. As a panel we will attempt to examine and identify the key aspects of the larger phenomenon of communicating the experience of illness in the digital age that we hope will help inform the continued evolution of online communities.

I would welcome comments and discussion in the comment section of this blog -- more voices on this subject are needed as we prepare for the Medicine X conference panel. I hope to see many of you in Palo Alto, September 5-7. For those of you who can't attend, I will post live-streaming and Tweetchat information for Medicine X as it becomes available.

Friday, July 4, 2014

Summer Thunder

As we enter the steamy months of summer, everything seems to expand and become larger than life, including rain storms. There is something awe-inspiring, fear-provoking, and finally soothing when listening to a summer rain storm. Perhaps not so unlike our thoughts and emotions? So, for this very rainy, awe-inspiring, reading a book on the couch, kind of 4th of July, I share with you a mindful haiku...

Rumblings of thunder
Now the rain's steady cadence
Listening to summer

Sunday, May 4, 2014

Hello Springtime

Isn't it interesting how trees covered in white evoke thoughts and emotion? Heavy with snow or laden with blossoms, one suggests the introspection of winter and the other the opening of possibility of spring. Enjoy the difference. 

Thursday, May 1, 2014

Mindful May Musings

The simplicity and sparseness of the haiku again spoke to me today. I won't be composing a daily haiku this month, but at least an occasional expression of mindfulness may find its way to this blog. Feel free to share your own Mindful May Musings in the comment section.

Plum Blossoms

Pastel petals nod
As the rain kisses each branch
Blossoms unfurling

Tuesday, March 25, 2014

Boston Spring Haiku

Last November I challenged myself and my blog readers to compose one haiku a day as an exercise in mindfulness. While I am not sure I am ready to recommit to a daily haiku quite yet, I do find myself using the beautifully simple construct of a haiku to view the world through a more mindful lens. Today as I drove along the Charles River on my way to Boston this haiku took shape.

Boston Spring

Sailboats gliding by
Snowstorm predicted tonight
Springtime in Boston

Wednesday, March 12, 2014


"Spring is when you feel like whistling even with a shoe filled with slush"~ Doug Larson
Crocus 4-1-11
For those of us in the Northeast (and other areas of the country too, I hear) it has seemed like a never-ending winter...days of bitter cold and snow followed by more bitter cold and snow. But now the hint that spring may be on its way...a few blades of grass have become visible under the graying snowbanks. Somehow the turning of the calendar to March leads us to shift ourselves to the possibility of renewal.  The promise of spring, with later sunsets, birds songs in the morning, crocuses bravely waking up from their winter slumber to meet the sun, are all reminders of the impermanence of nature and even with a shoe full of slush there is reason to take a breath and be grateful for renewals.