Looking for Meaning Beyond Work

I was in my late 30’s and had defined myself by my work in architecture, design and Web technologies. As much as I enjoyed the work, I found myself looking for deeper meaning in my life.

New Definition through Sophia

Having  Sophia  was  a  way  to  define  myself  as  a  mother  and  a  teacher,  and  to  reconnect  with  my  crea9ve  self.  When  she  was  born,  as  parents  usually  do,  we  started  chronicling  her  life  in  all  the  normal  ways  such  as  photos,  videos,  cards,  emails  and  legal  and  medical  records.  As  it  turned  out,  this  process  of  lifelogging  became  a  way  to  define  Sophia,  our  family,  a  community  and  myself.

Diagnosis  NPA  

Sophia wasn’t meeting her growth milestones and was having repeated infections, in medical terms a “failure to thrive.” After 3 months of painstaking tests, she was diagnosed at 10 months with Niemann-Pick Disease, Type A, a rare genetic, metabolic condition. She was one of 8 to 10 children at any given time in the world with this condition. Her life expectancy was 2 to 3 years. Needless to say, my worldview was disrupted and Sophia and our family started down an unexpected path.  

Paths to Navigate & Call for Healing

The healthcare system didn’t have much to offer, except physical and occupational therapy and grief counseling. We wanted to maximize Sophia’s quality of life. The mountain of work ahead of us was humbling. I intuitively knew this was not about Sophia, not about our family, but about all of us.

Emergence of Community Self

The larger group consciousness became apparent as we developed a model of integrative care. The model helped us recruit people as well as make strategic medical decisions. Sophia’s Healing Circle helped the team make sense of and bring order to the chaos and uncertainty.

Recordkeeping: The Icon of Empowerment and Community

One of the main ways we took charge was to track information—inputs, outputs, chemistry and care activities—and it wasn’t that easy to get everyone to do this.

Physical and Digital Records

After trying and failing to teach the nursing team how to use Excel (no Health 2.0 tools at the time!), the team fell in love with using physical sheets in a binder with a photo of Sophia on the cover.

Community Review

The binder, open to all, became a symbol beyond what was written in it. As the binder was passed from one caregiver to the next, it became an icon of empowerment, community and hope.

Home  Clinical  Trial  and  Case  Studies    Bring  Hope  and  Knowledge    

Our  par9cipa9on  in  and  documenta9on  of  a  home-­‐based  clinical  trial  and  six  case  studies  on  Integra9ve  Medicine  &  Experimental  Pharmacogenomics  and  Tradi9onal  Chinese  Medicine.  

Integrative Therapies at the End-of-Life

Gave our family a greater understanding of our experience from a scientific, psycho-social and spiritual perspective.

Collective Scientific Intelligence

The presentation and publication of the studies around the world provided insight for our family and became part of the collective intelligence.

Documentaries  

Throughout  Sophia’s  life,  a  team  of  filmmakers  and  photographers  documented  the  ongoing  work  of  Sophia’s  Healing  Community.  The  1500  photographs  and  over  70  hours  of  footage  provided  a  record  for  us    to  explore  in  the  future.  Even  if  no  on  ever  saw  the  photos  or  film,  the  very  presence  of  these  ar9sts  in    our  home  gave  individuals  greater  self-­‐awareness  and    a  deeper  sense  of  purpose,  as  well  as  created  a  collec9ve  sense  of  history  and  legacy.  

What began as a personal story of Sophia’s and our life evolved into a larger story of community and transformation. In retrospect, the “self” that evolved organically through observing, modeling, quantifying and creatively expressing—”lifelogging”—became a “collective” awareness and intention.

Sophia’s World: lifelog a collective self Karen Herzog and Richard Sachs • Valley Design Group and Sophia’s Garden Foundation