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Increasing the Balance in Our Health Journey

By ePatient, Family man, Leader, Musician

I’m using my health team actively this past month. I’m bone tired, stressed about work, worried about my health, all without my usual optimism and positive thinking. I’m out of balance. Yet, my mission is to increase the balance people, caregivers, and clinicians feel as they journey together towards best health. I need the balance, too, if I’m going to continue to meet my mission. Thankfully I have colleagues on my health team that can help. My career coach pointed out to me that I spend 90% of my time focusing on the organization I work for and 10% on myself. My music teacher suggested I focus on one music venue and cut out the others for a while. My physicians are helping me manage the path through some elective surgery. My personal counselor suggested time to recover – a weekend of meditation and a long weekend in Newport with my honey. As a leader, I do think about balance with my staff. Family first! But I don’t think we really balance well. I contribute to the lack of balance by pushing, pushing the envelope.


Balance implies constant motion – seesaw-like. Balance occurs occasionally naturally while going up and down. Some time a shift in weight, sometime a major lightening of a load. Balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. How do we help each other create space and then balance? I worked for a Catholic organization that often used the word grace. Thanks for giving me some grace. I could use a little grace here. The agency I work for now says,  first we listen. That’s another kind of space. Sometimes balance is an active process – change something, add a weight, take off a weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance.  I feel it acutely. I find it easier to be active to attain balance than to give myself some grace and let let the balance return more organically. It’s feels better to be creating space and appreciating space.  More optimistic, better spirit.  Let’s see what happens.

Labels – DisLabels

By Advocate, Caregiver, Consumer, ePatient
I’m disabled.  Iidentifyashaving a disability.  Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.

People at the Center -> Person at the Center = Gaps

By Caregiver, ePatient
A dear friend, Vern Schmaltz, died this week of ALS. He had so looked forward to retirement. His wife, full-time caregiver, faces a considerable gap in her life. “What will I do in the morning?” For the past months they’ve worked together to manage the daily routines of his life and navigate the medical system. She was committed to this more than full-time labor and labor of love.  Now the gap. Winding down, feeling lost, unmoored, exhausted, alone. She knew to take care of herself these past months-but easier said than done. Whatever reserves dried up in the intense last weeks. We spoke for a few minutes about reducing manageable stress – grief is not manageable stress nor is right sizing her home nor rebalancing finances. No stress seems manageable now. All of a sudden the people at the center is the person at the center. Gaps from losing a person at the center fades slowly. Filled in by life. It’s been more than 10 years since my son, Mike died.  Freaks me out that the gaps have faded so much. I treasure those gaps. 

Honor the caregivers, help the helpers

Sabbatical Ends

By Family man, Leader
As many of you readers know, I’ve been on sabbatical for the past 7 months after being laid off. It’s been a gift to my health – rest, catharsis, grandkids, networking, exercising, music, writing, teaching, exploring, and thinking. I’ve played in the world of entrepreneurs and start-ups, simulation, mobile health, and e-patients. Attended 5 conferences (New Orleans, Orlando, Raleigh, Washington, Boston) and met hundreds of new people. I spent 5 months working with a team designing simulation tools for patient and provider experience and decision-making. You might know simulation from video games and mannequins. Many lessons for health care in the start-up world. Refreshing energy. Taking an idea to a product to market. I also help start a monthly mini unconference called Pain Points in Healthcare with my friend, Dr. Kal Kalwa – networking with young entrepreneurs. I’m now a patient reviewer for PCORI  I’m learning about usability – the intersection of technology and work/life flow. I’ve written for the Society of Participatory Medicine. I interviewed for many jobs that could be exciting, but didn’t thrill me. Wanted to be a leader in a mission driven, patient centered organization eager to utilize my unique combination of skills and passion. My friend, Bevin Croft, found an opportunity for me. After a long courtship, Monday, I start as VP of Quality at Advocates (check them out). Their handle is ‘First, we listen.’ Don’t you love that!  My portfolio includes regulatory, improvement, experience, and informatics. So a new chapter, another hat. I plan to continue to blog at least weekly. Maybe a fresh perspective. Thanks for traveling with me.

Trust- Another Magic Lever

By Advocate, Caregiver, Consumer, Leader

Recently, Joan Vitello, Associate Chief Nurse at Brigham and Women’s Hospital, inspired me talking about ‘trust’ at a nursing leadership seminar. I’ve thought about it every day since. Trust is a magic lever of best health – for e-patients, caregivers, professionals, teams, and organizations. Trust accentuates the possibilities: Trust that I’m OK, however I feel. Trust in my team members – they have best health in their hearts, whatever’s in their minds. Health is a marathon – trust fuels the fire of persistence – keepin’ on. I’m not a religious person, but I’m spiritual. Trust = faith. Having multiple sclerosis I know if I don’t use it, I lose it. Takes many times longer to regain it, if at all. Trust is like that. Lose it and need a recovery plan with help.

I’m in Boston. How many people, even those without a family member directly injured by the bombing, have lost trust in the rightness of the world? My four-year old grandson experiences an iPad video game differently – a little bomb to deal with. He pauses, takes note. A little innocence lost. Trust?
A valuable commodity – trust. May I take care of it wherever.

Book review: Far from the Tree

By Advocate, Caregiver, ePatient, Family man

Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?

More? See the full review here in the Journal for Participatory Medicine
van Leeuwen D. Book review: Far From the Tree. J Participat Med. 2013 Feb 18; 5:e8.

Patient Adherence – Lessons from Recovery

By Consumer, ePatient, Leader
I attended a planning meeting of the #PatientAdherence Working Group in Newark, NJ on Thursday. The group dedicates itself to patients & health teams members developing an adherence plan for best health outcomes. I began discussion of adherence in a previous post Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language, and alignment of the health team; standardized work flows with on-the-spot improvisation; electronic and non-electronic tools; leadership; and management of cultural and social habits and challenges.

I was educated about the complexity of adherence under the tutelage of Bob Doherty while working at St. Peter’s Addiction Recovery Center in Albany, NY. Bob taught me that recovery (adherence) involves the whole person and all their social systems – personal health, family relationships, housing, diet, spirit, etc. That relapse is not failure but a milestone in a journey to best health. Relapse is an opportunity to learn and recalibrate. Such lessons! The medical side of health has much to learn from addiction treatment. An inspired example of technology contributing to adherence comes from The Recovery Engagement Center. Check it out.

Best organizational health – recovery

By Leader


Individual best health depends on organizational best health. I spent a valuable portion of my professional career working in behavioral health. Organizations and individuals all suffer tragedies from time to time.  Many similarities exist between organizational improvement and personal recovery. For example, an addicted person follows a longstanding behavior without question. The behavior affects the addict negatively, even tragically, but definitely results in poor performance.  Resistance to change is fierce. The addict will not be forced to change. When the addict perceives the hopeless of the addiction, usually in a heightened state of collapse and despair, he or she becomes open to exploring new behavior patterns and significant belief systems become rearranged, thus creating positive change and subsequent improvement. Paradoxically, hope evolves from despair or surrender. Healing occurs first in the spirit, then in the mind and last in the body.

When an organization suffers a tragedy, it also recovers first in spirit, then in the mind and finally in the body. An organization recovers by rebuilding its spirit (mission) by embracing and focusing on its mission in all areas of operation. Next it strengthens the mind (leadership) by rebuilding coalitions, aligning collaborations, and rounding to maximize employee and patient experience.  Finally, it heals the body (staff, processes and systems) by mindfully involving all stakeholders.
Have you experienced organizational recovery? How has it recovered?