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Once Again – Stranger in a Strange Land

By Advocate, Consumer, ePatient

doctor-cant-see-youI spoke with a friend this week who felt like a stranger in a strange land. She’s recently moved to a community with almost no experience with Muslims, people from West Africa, or with those with chronic pain from a genetic disease. Every encounter presents challenges drawing on her charisma, empathy, dignity and ability to adapt and educate – sometimes during the crisis of severe pain. During my friend’s medical encounters she does not face a health literacy dilemma. She is usually more expert about her culture and her health challenges than the medical professionals she meets. She faces a life literacy dilemma. In my life as a patient and career as a clinician, I face an infinite variety of people, cultures, and situations different from my own or my comfort.  I am often at a loss at how to engage this range of clinicians (as a patient) and people (as a clinician).  How can we proactively prepare for so much unknown and unfamiliar? Read More

Stranger in a Strange Land

By Advocate, ePatient, Leader, Musician

OMGdpdrmultiface, where’s my wife? I need to be rescued. I can’t do this. I can’t be here. My pounding heart, my rapid, shallow breathing. I can’t be here. Where’s my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land of the medical industrial complex?

No, I’m on a Blues Cruise. I want to play the blues with other amateurs. They are the amateurs that are not headliners. They have blues bands of their own and play regular gigs wherever they live.  I am an old, baby amateur. I’m the only horn player at this session. I don’t know the tunes. I don’t know what key they’re playing in. I am SO way over my head. It could just as well be a gaggle of 8-year old’s trading Pokémon cards. Read More

I’m So Discouraged

By Caregiver, Clinician, ePatient, Family man, Musician

Several times this week I heard a variation on: I’m so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple things. One person, me, said it about losing weight and soloing. Two things strike me here. First, sucking and second sliding back. Can’t we give ourselves a break and celebrate that we’re trying? I’m trying to meditate every day, lose weight, improve my mental health, solo on my sax!!!! Yippee for me. Yippee for us!!! Recovering, healing, learning, changing habits doesn’t happen in a straight upward line, steadily better. It’s two steps forward, one step back. It’s up and down, first wildly so, then smaller cycles of up and down, over time with forward progress. Looking at just 2 data points only frustrates us, since we tend to recognize the down after the up, rather than the up after the down. In each of the scenarios someone heard the other and provided a good job, way to go, keep it up, keep me posted, call me anytime

I honor you’re work of healing, learning, recovering. Good job, way to go, keep me posted, call me anytime.

Last Post, New Year

By Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Pausing – A Magic Lever of Best Health

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician
Yesterday, my wife took me to Boston Improv for my birthday. My daughter-in-law took me out for lunch. This week I found myself spacing out several times at my desk.  I listened to the rhythms of conversation in meetings at work.  Today, I played some blues on my bari sax. What do these scenarios have in common? The pause: A moment’s break to listen, to reflect, to balance.
During improvisation, comedy or music, players need a second or two to listen and feel the groove while contributing. Otherwise it’s cacophony. The pause, not blowing the horn, not talking, is integral to the rhythm. You could say that the rhythm is the space between the sounds. When work piles up with e-mails, reports, and to-dos, we need desk time with a few minutes to reflect on the purpose and quality of our work. Otherwise it’s disconnected and exhausting. The pause, however brief, settles the mind, allowing it to breathe. During conversation we need a few seconds to digest the message we hear before jumping back in. Active listening requires time for the person to complete their thought.  Often I jump right in, rushing to contribute as soon as the sound from the speaker’s lips stops. Getting my sound in before someone else jumps in. Lord, that’s a tough one. During the chat with my daughter-in-law, we spoke about a different kind of pause: pace of life and balance – allowing the space for music, exercise, family, health appointments.  It’s a challenge for working parents and someone with a chronic illness, or both, or neither for that matter.
Honor the pause. It’s integral to best health.

Doing Less Better

By Caregiver, Consumer, ePatient, Leader, Musician

Getting better –  Few magic wands or silver bullets. A couple of steps forward, one back at best. It’s challenging to select when to move forward and when to wait. Does inching forward on many fronts get you better faster than moving a foot on fewer fronts? Does doing less better make sense? I play in a big band learning many charts that stretch my reading skills and dexterity.  I also play in a student combo stretching my music theory and improvisation skills. I can squeak out 1 to 3 hours practice time a week. Not enough, I think, to really improve at anything. I feel so stretched I’ve stopped taking lessons. So I’m getting better too slowly for my satisfaction. On the other hand when Pablo Casals, maybe the best cellist ever, interviewed at 92 years old, he said he couldn’t talk more because he had to go practice. “Practice?” the interviewer said, “but you’re the best ever.” Casals quipped, “I’ve almost gotten it right.”  I decided to stop playing in the big band and focus on the combo.  I’d rather learn more music theory and improvise better. I’ll also resume the lessons. I only have so much gas in my tank. The stress of feeling overwhelmed – too many fronts – consumes fuel. Maybe doing less better with less stress burns less fuel.

Doing less better also has relevance for a team. At work we have many projects inching forward but we’re less than satisfied with the progress on any one of them. The team needs and wants to improve on many fronts, but wants to resolve most of them yesterday. Stress results. It’s more satisfying for the team to reach and celebrate milestones than sense that the foundation is rising by inches. Once again would the team’s health improve more if we do less better? We’ll see.

Mistakes – Finding your Groove Again

By Clinician, ePatient, Family man, Musician
We make lots of mistakes improvising while playing music in my jazz combo – wrong notes, lose our place, no feel for the rhythm. No mistakes never happens. The music is good when the group communicates, recovers and finds the groove again. There is never no mistakes on the health journey.  Mistakes range from missed doses, added pounds, underwhelming exercise, and falls to unhappiness, crabbiness, and misjudged  function. Something hopeful doesn’t work, something makes you sicker.  It’s the human condition – mistakes. Expecting no mistakes is unreasonable. (I’m not talking about never events – wrong sided surgery, neglect, hubris, disrespect). Health can improve when mistakes are recognized and communicated. Lessons can be learned, something else tried.  We find the groove again.

Comedy Improv and the Health Journey

By Caregiver, Clinician, Consumer, ePatient
I’ve written before about music improv and the health journey.  Today I’m inspired by Tina Fey.  She says:

The first rule of improvisation is AGREE. Always agree and SAY YES. When you’re improvising, this means you are required to agree with whatever your partner has created. For the health journey this means accept what is as soon as you can. “This sucks, why me” is real and necessary, but agree/accept allows you to move on and deal with it.
The second rule of improvisation is not only to say yes, but YES, AND. You are supposed to agree and then add something of your own. For the health journey this means take charge. Wherever you’re at, build a team, seek information, get help.

The next rule is MAKE STATEMENTS. This is a positive way of saying “Don’t ask questions all the time.” If we’re in a scene and I say, “Who are you? Where are we? What are we doing here? What’s in that box?” I’m putting pressure on you to come up with all the answers.In other words: Whatever the problem, be part of the solution. Don’t just sit around raising questions and pointing out obstacles. This means try stuff.  Follow the advice of your team or don’t – follow your nose.  But try stuff to feel better.

THERE ARE NO MISTAKES, only opportunities. For the health It’s all an experiment.  Professionals give advice from the knowledge they have about populations – groups of people.  You are one person. You are the expert about yourself. If whatever you do works-congratulations.  Write it down. When x happens and I do y, I feel better. If it doesn’t work, write that down too and try something else.  If your working on one thing and it doesn’t get better, try something else.  
If you’re tired of trying,  listen to Robin Williams, Mel Brooks, Jonathan Winters, Tina Fey or whoever makes you laugh. Share who makes you laugh.
Have a good week.

Sounding like yourself

By Caregiver, Consumer, ePatient, Musician
Two musical events for me yesterday: my combo rehearsal and Victor Wooten, Steve Bailey, JD Blair, and Derico Watson at Berklee School of Music. The latter, 2 virtuoso bass players and 2 amazing percussionists, demonstrated energy, experimentation, creative inclusion of the audience, and remarkable unspoken communication among themselves. My combo – not so much. Some of us have played together for 2 years – rank amateurs. Yesterday, a new drummer joined us: we are piano, bass, trombone, and Bari sax. We all listened to each other, but none of us  quite followed the tunes’ form, so there were  conflicting cues, frustration, and much verbal communication. We kept at it, and actually improved some over the 90 minutes. My sax teacher has me working on the basics: chords and scales. Don’t worry about the improv, it will come. I do angst about the improv, constantly criticizing myself.  I hate it when people criticize themselves. I left the Berklee concert, thinking that these musicians sound like no one else and they are unafraid. I certainly sound like no one else.

What do I extract from these experiences for the health team’s journey? 1. Listening isn’t enough, there needs to be a solid frame and 2. Sounding like yourself is good enough. The frame for a health journey comes from the person at the center of care. If listening to each other still feels confusing or disjointed, revert to listening only to the person at the center. Every health journey is unique-some polished, some not. The choices we make work out or don’t. Harping on being right or being good doesn’t help us move forward.

Listen to the music

By Caregiver, Clinician, Consumer, ePatient, Musician

Yesterday I played in a recital with my jazz combo-dedicated amateurs. Musically we have greatly improved.  The devil is in the arranging. Who plays when and where, in what order. Trying to get it right one player sent an email to everyone with the arrangements. We rehearsed one last time in the morning, making a few changes. He sent the revised arrangements out just before the gig.  I printed and didn’t review. One tune was a complete disaster.  The changes were not what we agreed to, I was the only one that printed the changes.  I noticed the discrepancy in the middle of the tune and chose to play as written, not as I remembered what we agreed to. I messed everyone up, the tune fell apart. Disappointment, irritability.

Alignment is tough in music and in health.  Everyone’s talent, passion, and goodwill goes up in smoke when the alignment / arrangement isn’t there. How do we align in health care?  The person at the center and their team knows and agrees on the goals and the action steps. They communicate the inevitable adjustments as they occur. A small tight group that plans is no guarantee that the alignment will hold. Sort of surprising that we expect it to be smooth or flawless. Sometimes if we listen well and hear the mismatch we can adjust and realign and sometimes we can’t. Listening. Anyway, three out of four tunes sounded great. I guess that’s not too bad. But it’s not my health.