Tag

magic lever

Adapting – Balance

By | Advocate, Caregiver, Consumer, ePatient, Family man, Leader | No Comments

When diagnosed 7 years ago with Multiple Sclerosis, my neurologist told me I’d had MS for 25 years. Why didn’t I know it before? He said that I was a master at unconscious adapting – my nervous system and brain adapting, creating new pathways, and my creativity in finding alternate ways to do stuff. Adapting to maintain. Now as my balance and my left leg strength diminish, I’m adapting again. I’ve left my job as well to find a better balance in my life. More adapting.  This time it’s more conscious adapting. Building my core strength, compensating for my lack of proprioception (the fifth sense of knowing where your body is), and continuing to meet my personal mission. Before I was diagnosed I composed my mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together toward best health. So, balance as not falling and life in harmony – yours and mine. Magic levers of best health: balance, harmony, adapting. Onward!

Gratitude

By | Advocate, Clinician, ePatient, Family man, Leader | No Comments
Silent gratitude isn’t much use to anyone. ~ GB Stern
It can be tough to feel gratitude in the face of adversity. Yet where does dignity and strength lie except with gratitude? Stress, adversity, pain, grief are not solid entities.  Rather, they cast a heavy shadow on the variety of life. They demand attention, but are not all. This week, I feel stress, pain, and grief as I prepare to leave my wonderful team at work. I feel grief, because I will miss the struggles,successes, and mutual growth we have experienced together.  I am grateful for the team’s counsel, support, and persistence. I’m grateful for the opportunity to have done good work together. Gratitude is a magic lever of best health.  Here’s to best health for all. Thanks team.

Belonging – a matter of perception

By | Caregiver, Consumer, ePatient, Family man | One Comment
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

By | Caregiver, ePatient, Family man, Leader | No Comments

“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.

Finally, narratives at the end

By | Caregiver, Family man | 6 Comments

Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot  — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true.  I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down.  What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love.  I miss them all.

Nothing about me, Without me.

By | Advocate, Caregiver, Consumer, ePatient, Informaticist, Leader | No Comments
More about the work of the group OpenID HEART (Health Relationship Trust) that I blogged about a couple of weeks ago. Health Relationship Trust: interesting name – people at the center trusting the relationships in their health journey. My blog tag line is: Discovering the magic levers that impact best healthMy personal mission is: Increase the sense of balance people, caregivers, and clinicians feel as they work together towards best health.   Best health is tough enough. Relationships and trust are magic levers of best health and live at the core of people’s balance.
The electronic interconnectedness of people, their caregivers and professionals in their agencies allows our personal reach, our health neighborhoods to expand. The flow of information increases hugely. It’s wonderful: We can keep track of loved ones from a distance. We can find neighborhoods of people like us all over the world. We can communicate with our health team where ever they live.
But this information exchange comes at a price. The big business of information is the price. We have gotten away from nothing about me without me. We have most control of direct person-to-person communication (talk, snail mail, email).  Trust still matters. Will the person listening keep it to themselves?  Do I care? As more data about me is collected, who owns that data?  My control decreases dramatically. Can I share where I want? Can I correct errors? Can I retrieve data?  As automated systems for data exchange are created, can I influence the content that is exchanged?  Not just whether or when, but also what content matters to me?

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Children of the Sun, Earth, and Moon

By | ePatient, Family man | 2 Comments

 

Aristophanes tells a creation myth that places humans of all three genders (androgynous, male, and female) in a primeval state of eternal bliss. However, we grew insolent in our blissful state and refused to properly honor the gods (and even tried to pursue them in their mountainous home). As punishment, we were split in two. Those with a “male” nature (the Children of the Sun) became homosexual men; those with a “female” nature (the Children of the Earth) became Lesbians; and the androgynes (Children of the Moon) became heterosexuals. Navels are the souvenirs of the operation we all went through in being divided from our beloved other half. The myth warns humanity to be careful in always honoring the gods (especially Eros) or we will be hewn in two once more, leaving us to hop around on just one leg. Part of properly honoring Eros is to search for and find our lost half, to be restored to our natural state of bliss. (Thanks to Josh for pointing me here).

My cousin, a Child of the Earth, married her partner of 16 years yesterday. Celebrating were children of earth, moon, and sun. Open, legal, honored. My dad was a Child of the Sun, in the closet to his death 42 years ago. He was present through me, having a blast – and honored.

The procedure wasn’t successful, but the experience was

By | Clinician, Consumer, ePatient | No Comments

I went to Beth Israel Deaconess Medical Center in Boston Friday for an outpatient invasive procedure. Pretty amazing. A well oiled production, well-informed, with amazing service. Upon arrival my wife and I received a pager to signal us when the prep nurse would be ready for us. We sat in an area asking us not to eat there to respect people who were NPO (nothing by mouth) while waiting for surgery. In 10 minutes we were called into the OR prep area and told what to expect while we were being prepped for the procedure.  They had plastic tents labeled H&P (history and physical), OR consent, Anesthesia consent, site identification, medication reconciliation.  As they completed each one, the tents were moved from one side of the table to the other.  I was asked which side my procedure was going to be on, what was the procedure I was having (in my own words), I got a bracelet with my ID, one with my allergies, and one on the side of my surgery.  The consents were in Plain English, were explained to me, time given for questions. Very smooth, quick, but didn’t seem rushed. During shift change, the hand-off was complete, verbal, and included me. Everyone was amazingly pleasant and personable except one person (who stood out in such contrast).  This continued for all nurses, technicians, physicians, and assistants.  The surgeon called my wife on her cell phone after the surgery to tell her everything. My instructions were clear, written, and repeated several times.  I received a phone call the next morning to ask how I was doing and see if I had any questions. The procedure was not successful. I was so disappointed, but the possibility had been explained to me. The experience was a success. We’ve come such a long way over the years. Thanks all.

A magic lever to best health – data and information

By | Advocate, ePatient, Informaticist, Leader | 2 Comments
I work in a human services agency.  We support individuals with disabilities. We help people achieve their hopes and dreams in their communities. One of our strategic activities is to increase the information available to the persons we support, staff who support them, management who  supervise staff, and our funders. The information helps us all keep a pulse on how well we’re doing and improving and alerts us to areas of risk to individuals we support, staff, and the community. Providing meaningful information that can be acted upon has its challenges.  Meaningful information comes from trustworthy data that represents real life work and wellness. We subscribe to the Triple Aim of improving individual well-being and experience; improving the health of the community; and improving the value of the support and care systems we provide and use .
We find ourselves either drowning in data that doesn’t inform us nearly as well as we’d like or lacking information about areas that seem critically important. Imagine being in an ocean of data and not being able breathe. No learning, no wisdom, just soaking wet. We think that people are dying too young, that they could be healthier, happier, and more fulfilled in the community.  We think that support could be better coordinated and that people could be more drivers of their own health journey. We think that we spend too much money on expensive care and that we are often penny wise and pound foolish. How do we know? When will we know it’s getting better?
This begins a series of posts about our challenges with data, information, insight, and action. Possibly a drier topic than some of my recent posts, but it’s my idea of fun – it’s a magic lever to best health.