Driving our health journey – writing the story

For individuals to drive their own health journey we must have the key to the ignition, be in control of the accelerator, the brakes, the steering wheel, and be able to see the full dashboard of cues about ourselves. At the same time we need to control access of passengers, be able to give the keys to whoever we choose, deny access to whomever we choose, and trust those who take the wheel for us.
We also need to be able to read, share, and correct the story about our journey. We need to contribute our chapters – our destinations (goals), our lists, our tracking, our feelings. If we want to, we need to be able to ask others to contribute chapters. We need an eBook version of our story that we can edit and share portions we choose with anyone we give permission to read it. With many people and reports about us, contributing to our book, chances are some of it will be wrong. Wrong person, wrong time, wrong diagnosis, wrong, wrong. We are the only common denominator of our story. We need a way to correct the errors we find. Our lives could depend on it. We are the single source of truth about our story.
I love puzzles: This is the puzzle of many lifetimes! I’m driven to contribute to solving some of this puzzle. Last week based on a recommendation of a fellow member of the Society for Participatory Medicine, Adrian Gropper, I joined a group, OpenID-Heart.
The HEART Working Group 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 
What does this mean?  Many people and interests throughout the world are working on solving the puzzle of privacy, security, and health data sharing. An API makes it possible for computer programs to talk to each other and share data. REST means that the API can expose something the software does while protecting other parts of the application. Health data is big business and very personal. The voice of the people at the center of care is critical.  I attended my first weekly hour-long meeting. While much of it was technical and over my head, I joined because someone asked about patient goals. I’ve never heard techie’s speaking about patient goals. To me that’s, What am I, are we, trying to accomplish on my health journey?  Certainly end-of-life choices is one, but more often it’s less pain, less fear, more fun, managing my meds, hanging with friends and family, fitting in my clothes, getting to work, getting to the doctor, having love in my life. I think I’ve died and gone to heaven.  I’ll keep you posted.


Pausing – A Magic Lever of Best Health

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.

Hope – Magic Lever of Best Health

Hope – a magic lever for best health. Hope = optimism, expecting good results next. Hope feeds resilience. Spiritual strength contains hope. A key differentiator among those with chronic illness is less the degree of disability or pain, but the presence or lack of hope. For myself, when hope is absent, I feel much worse – a direct correlation. Sometimes it’s hope that my situation can change. Sometimes it’s faith that I can adapt to a growing challenge. Mostly, I feel that I’m blessed with a reservoir of hope. It’s in my DNA. I had nothing to do with it. The opposite of hope is despair. Many, many people with chronic illness despair, have little or no hope. For me the people around me have the biggest influence in my maintaining or rediscovering hope. When I lack hope, lack optimism, I do a mental check of who I spend my time with – personal and business – and increase the time with those who feed my hope. I give thanks to those people. Couldn’t do it without them.

15 Minutes

In my career I’ve often found myself bewildered when I’m amazingly ineffective in engineering a change that appears to be a no-brainer. I’m kind, smart, experienced, charismatic, brave and strategic. Where does the resistance come from? Don’t they get it?  What’s the deal? Well, I’ve learned that you can’t have more than a 15 minute advantage on your constituency. Your constituency can be your team or your organization. When you have more than a 15 minute advantage, you have to go back and get them.  Dramatic change comes from within, seldom from without. People need to be ready for change. They need to understand the language you’re speaking. You need to understand their’s. People and organizations can only change a little at a time when pushed. I have found that even if people embrace and talk about a  change, they can only be influenced/guided to change gradually. Usually I’m too far ahead and have to go back, take the temperature, listen, understand their language, their incentives. And then bring them along slowly, planning and executing smaller steps. Takes great patience – not my long suit – exercising my weak patience muscles. Then I need to be prepared to move forward when the time is right. The fun part of being a change agent is finding and working with those like-minded colleagues who will co-engineer change with the 15 minutes in mind. If it seems that it will never be possible, it’s time to move on. Please lord, help me to know that time.

Amazing Grace

Did you hear the full video of Obama’s eulogy at the Emanuel African Methodist Episcopal Church? I contemplation grace often, but I’ve never heard such an eloquent reflection. Grace is acceptance, forgiveness, bravery, humanity, dignity. Much to aspire to, often falling short.  I contemplate grace while traveling on my health journey, gravitating towards team members with grace, visualizing grace while managing myself. I meditate on grace at work, trying to maintain my own dignity when feeling battered by stress, change, and misunderstanding. Yesterday, on my 40th wedding anniversary I celebrated the grace of my wife who inspires me to be the best man I can be.
I can’t let this post go by without honoring the Supreme Court gay marriage ruling, (Colbert: ‘Hard To Believe Gays Achieved Personhood Just 5 Years After Corporations Did’). A lot to be grateful for. Amazing Grace.