Category

Musician

Giving Thanks

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Musician | 4 Comments

I’m thankful for the superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.

I’m thankful that I was born a  white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.

I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.

I’m thankful for my extended family, characters all.

I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.

I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.

I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.

I’m thankful for my grandsons – OMG, what can I say?! Read More

Superpower: Opening our hearts

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 5 Comments

I’m scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren’t for others – all sorts of others. Feelings of injustice can power so much. I don’t pretend to understand all the righteousness, anger, and meanness that erupt when disappointment builds. But it feels as familiar as the human condition throughout the planet and over the ages. It’s like earthquakes from fracking.  I’m thankful that my mother, a Holocaust survivor, is no longer alive. She would be apoplectic and inconsolable.  What’s going to happen now? How should I act? As when grieving, I will mindfully minimize controllable stress – exercise, rest, listen to and play more music, spend more time with friends and family. I will continue to give thanks for all I have in my first world life. I will continue to pursue my passion for maximizing the experience of people at the center of care. I pray for the physical and spiritual strength to speak up, stand up, and act when the moments seems right. I’ll need strength to take the high road in this low road time. More than anything I’ll pray for unexpected open hearts. The community needs it. Our grandchildren need it.  The unborn need it. Onward.

Stranger in a Strange Land

By | Advocate, ePatient, Leader, Musician | No Comments

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

Life literacy – If you can’t explain it to a six year old…

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | 2 Comments

I play baritone saxophone in community Latin and blues funk bands.  Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur, I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient-Centered Outcomes Research Institute).  I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study).  I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at thesparents-teachers-meeting-vinod-school_b2840c36-5634-11e6-bc43-9f8bec77897ce sessions. I also take part in calls for OpenID HEART Working Group that intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago. Read More

I’m So Discouraged

By | Caregiver, Clinician, ePatient, Family man, Musician | 7 Comments

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.

Screen-Free Sabbath

By | Family man, Musician | One Comment

Week 3 of my wife and my Screen-Free Sabbath. Feels pretty good. After the first week it feels like a relief.  I’m reading more books – paper and not Kindle. Turned off my e-mail and social media notifications. They were all still there at sundown Saturday. No emergencies. Sitting still more often – some alone, some with my wife.  Got my recumbent trike out, tuned up and rode it. Had to buy some paper Sudoku books. It affects my week as well. I’m looking at the phone less often, meditating more. Still using the iPhone for texts and phone calls-have only received a few. Using it when playing my sax: playing my recorded rehearsals, metronome, etc. Sitting on the bus or subway more often looking at people and not the screen. Noticing the blue sky and spring colors. My grandson freaked out: Will I have to do it too? All week? OMG. He’s relieved that it’s just Grandma and Opa and not him, unless he’s at our flat sundown Friday to sundown Saturday.  I’ve spoken to several parents who have 5-7p screen-free every day, others do a 24-hour period as we do.

Read More

Engaged with Sax

By | Advocate, Caregiver, ePatient, Family man, Musician | No Comments

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’
Read More

Last Post, New Year

By | Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 2 Comments

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.

Amateurs Among Professionals

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Musician | One Comment

I play in an amateur blues funk combo. Yesterday we had a gig at a local Jazz club. Hear it here. We played in a lineup of 9 amateur community bands,  each led by a professional musician. An entrepreneurial professional created more than 20 such groups,  Morningside Studio. All of us aspiring musicians have a chance to advance our musical dreams. Already quasi experts in our instruments (also taking individual lessons), we’re learning about making music as a team.  It got me thinking about health care. The vast majority of people and caregivers are amateurs gigging with professionals. Unlike the musicians, most have no interest in health care, just there because they have to, gone when they don’t. Others have great ability in their own instruments, their bodies, learning about working with a health care team. Some health care professionals are good team members. Others are not. Some are good teachers. Other not so much. Even the professionals are amateurs when it comes to their own health. For the most part, the only professional patients are those with chronic illness.

I’m struck by this constant challenge in healthcare: amateurs and professionals working together with that toxic overlay of big business. Can I learn anything from the combo experience? Well, I can leave a group if I’m not simpatico with the professional.  I can usually leave my clinician if we’re not aligned, but it’s much harder. I learn as much from fellow amateur musicians as I do from the professional. I learn much from others with chronic illness, multiple sclerosis, and others fine tuning their lives and their health. I look for one pearl a session from the professional musician. I’m delighted when I see it. Same with sessions with health professionals. Arrogant distracted professional musicians are a drag.  Arrogant distracted health professionals can be dangerous.  It’s a matter of degree.  Hat’s off to amateurs learning to work with a team.

Pausing – A Magic Lever of Best Health

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 4 Comments
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.