Re-calibrating – Finding Balance

So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.

I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, 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 attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space.  More optimistic, better spirit.  Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.

Nowhere We Can’t Get to in an Hour

In our BvL WV30’s we lived in West Virginia – very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming – garden, bees, fruit trees, chickens. Another community was the town emergency squad where I volunteered as a paramedic and my wife drove the ambulance. The community of young back-to-the-landers throughout the state was yet another community – playing music, partying, sharing skills, stories and resources. A different community was that of a state-wide network of people teaching Advanced Cardiac Life Support – meeting twice a year to train trainers and then traveling to teach at each other’s courses. Another, was the group of people lobbying for homeschooling in the state capital – conservative Christians alongside hippies. Although it’s the most rural I’ve ever lived, I grew up in Chicago and Detroit, I had the highest sense of community there in rural WV.

House WV Continue reading “Nowhere We Can’t Get to in an Hour”

The Thorny Thicket of Feedback and Advice

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.

What’s the difference between advice and feedback? According to the dictionary,

Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.

Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.

They blend together for me.

Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.

So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Continue reading “The Thorny Thicket of Feedback and Advice”

I thank you God for this most amazing day

I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes.

e.e. cummings

An email this morning from the library told me that the reserved book, Wright Brothers by McCullough, had arrived. My big stressor was that yesterday I picked up another book, Quicksilver by Stephenson – all 925 pages. OMG, how can I get all that read in a week!!! Nice stressor, ehh? Also yesterday, my acupuncturist told me I hadn’t looked happier in  years. Wow:) Continue reading “I thank you God for this most amazing day”

Belonging – a matter of perception

During the inevitable ups and downs of life, I feel better when I belong. The pointy end of illness, loss, unintended change, stress, can be softened by belonging. Belonging to a family, team, community. What is this feeling of belonging? Being with family, comrades, teammates, cronies, neighbors. My wife and I are visiting old friends.  Old friends know the good, the bad,and the ugly and still like you and want to be with you. They have been with you through it all. Hence, old friends. Our neighbors look out for us, they have our back, literally. We belong. Belonging fuels a positive narrative that empowers me. I can take risks, I can survive mistakes, I can recover, I can feel better, I can find some peace when I belong.
Belonging feeds itself. To belong, I need to be a family member, a teammate, a neighbor. It’s an investment with some risk and some return. Belonging has an open heart. Paradoxically, an open heart is risky with the possibility of huge return and huge hurt. Yet a better risk than Powerball.  Turning a negative narrative into a positive narrative increases belonging – it’s a superpower. It’s a matter of perception. It’s a magic lever of best health.

Finite disappointment, infinite hope

“We must accept finite disappointment, but never lose infinite hope.”― Martin Luther King, Jr.

Mutual disappointment can  bring out our best selves or worst selves – disappointment in a lover, friend, colleague, hero, business associate, health team member. Underwhelmed by expected results -> disappointment.  No disappointment without high hopes. Disappointment drains my immune system and fills my gut like sucking air out of a large balloon. I want to keep the best imprint in my mind of my disappointment partner. I need my best self to have that kind of vision. More than one friend has called me a pathological optimist. My funky immune system can still fire that optimism. Not without cost. My family and friends provide more fuel. Thank you lord. May you all find your best selves when tripping over disappointment. Stay strong. Love yourselves. It’s a magic lever for best health.

Increasing the Balance in Our Health Journey

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

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

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

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.