Tag

resilience

WHAT RESEMBLES THE GRAVE BUT ISN’T

By | Advocate, Clinician, ePatient, Family man | No Comments

Photo by Lily Lvnatikk on Unsplash

Apologies for the duplicate post. I changed hosts and lost this post in the migration.

My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for myself, and overwhelmed with the pain I feel around me. Doesn’t this say it beautifully?!

WHAT RESEMBLES THE GRAVE BUT ISN’T

Always falling into a hole, then saying “ok, this is not your grave, get out of this hole,” getting out of the hole which is not the grave, falling into a hole again, saying “ok, this is also not your grave, get out of this hole,” getting out of that hole, falling into another one; sometimes falling into a hole within a hole, or many holes within holes, getting out of them one after the other, then falling again, saying “this is not your grave, get out of the hole”; sometimes being pushed, saying “you can not push me into this hole, it is not my grave,” and getting out defiantly, then falling into a hole again without any pushing; sometimes falling into a set of holes whose structures are predictable, ideological, and long dug, often falling into this set of structural and impersonal holes; sometimes falling into holes with other people, with other people, saying “this is not our mass grave, get out of this hole,” all together getting out of the hole together, hands and legs and arms and human ladders of each other to get out of the hole that is not the mass grave but that will only be gotten out of together; sometimes the willful-falling into a hole which is not the grave because it is easier than not falling into a hole really, but then once in it, realizing it is not the grave, getting out of the hole eventually; sometimes falling into a hole and languishing there for days, weeks, months, years, because while not the grave very difficult, still, to climb out of and you know after this hole there’s just another and another; sometimes surveying the landscape of holes and wishing for a high quality final hole; sometimes thinking of who has fallen into holes which are not graves but might be better if they were; sometimes too ardently contemplating the final hole while trying to avoid the provisional ones; sometimes dutifully falling and getting out, with perfect fortitude, saying “look at the skill and spirit with which I rise from that which resembles the grave but isn’t!”

~Anne Boyer, “This project was co-curated by the journalism nonprofit the Economic Hardship Reporting Project and its Puffin Story Innovation Fund.”  ~https://billmoyers.com/story/poetry-month-what-resembles-the-grave-but-isnt/

Eulogy

My Aunt Kato (Kikke) Pomer (van Leeuwen) passed away this week at age 101.  Kikke was a Freudian psychiatrist who began medical school in the Netherlands just before the Nazis invaded. She and her family escaped to the United States, She couldn’t gain admittance to medical school here because she was a woman, a Jew, and a refugee.  A family friend suggested that she meet Albert Einstein and ask him for a reference. She did and he did.  She graduated from Johns Hopkins Medical School and practiced in LA into her 90’s. Aunt Kikke inspired and encouraged me in nursing, advocacy, and in life. I’ll miss you.

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Passover

By | Advocate, Family man | One Comment

My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. I listened to Amy Chua speak about her book Political Tribes: Group Instinct and the Fate of Nations on the Lawfare Podcast. I watched Samantha Bee on Full Frontal talking about women, history, and the treatment of pain. The wind has been sucked out of my sails.  I may style myself a feminist, but the country, the healthcare system, medical research and the breaks are designed for me. I certainly have my challenges, but they are minimal compared to those outside my shrinking white man minority tribe.

I care about learning what works for people – groups and individuals – as they strive for best health. Yet most historical evidence – research – has been designed for white men, not women, not refugees, not people with limited means and power. It makes me crazy. What is wrong with us? Plus, our nation seems to increasingly petty, mean, shortsighted, and self-interested.

OK, white boy, get over it. I once got myself in trouble at diversity training. I said, My father was gay, my parents were holocaust survivors and refugees, my brother and sister are of mixed race, and I’m a man in a female dominant field – nursing. And now I’m disabled.  My prejudices aren’t about gender, religion, race, disability.  I’m prejudiced against thoughtless people. I was not appreciated.

Anyway, nothing has changed from before this week and now. The world is still crazy. I live in a racist, misogynistic, mean-spirited country. Thankfully, there are tribes of people trying to do the right thing. I can’t afford to lose my pathological optimism.  I’m still working more and more on advocacy about making collaborative health choices (informed decision-making) with my health team based on science and my environment, circumstances, and values. Treating health choices as a grand experiment is still a sound approach. Try stuff, see if it works. If it doesn’t, adjust. I am so heartened by the March for Our Lives initiatives. Activated young people are our hope and our future.

It’s Passover, time to celebrate liberation. Liberation is not a destination, it’s the journey.

Thanks for listening to me rant. Good to be on this journey with you. We have work to do.

Thoughts on Liberation

Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.  Martin Luther King Jr.

I did nothing but international liberation politics for ten years, and usually it was like, you gain an inch, you lose a half an inch. It’s slow going, man. Steven Van Zandt

If you’ve got nothing to dance about, find a reason to sing. Melody Carstairs

On the road to liberation, learn to press Next. Even if there is no such an option. Talismanist Giebra

I am the bended, but not broken. I am the power of the thunderstorm. I am the beauty in the beast. I am the strength in weakness. I am the confidence in the midst of doubt. I am Her! Kierra C.T. Banks

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Belonging

By | Advocate, ePatient, Family man, Leader | 4 Comments

“Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend.” ― Wallace StegnerAngle of Repose

“I rest in ease, knowing there are others out there, whispering themselves to sleep, just like me.” ― Charlotte Eriksson

I am the son of Holocaust survivors.   My mother was a German Jew, a refugee in Netherlands spending her teen years in hiding, then a refugee in the United States. Her family had means and connections.  My father’s father was a survivor of the Bergen-Belsen concentration camp and a refugee in Switzerland, then the United States. He had means and connections.  They were both welcomed into this country. Read More

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.

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.

Hope – Magic Lever of Best Health

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

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.

Amazing Grace

By | Advocate, Caregiver, Consumer, Family man | No Comments
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.

Fear on the Health Journey

By | Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist | No Comments
Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.

Driving your own health journey

By | Advocate, Caregiver, Consumer, ePatient, Family man | One Comment
How is it that people develop and learn to drive their own life, their own health care journey? Our 5-year old grandson usually gets picked up from school on Thursdays by my wife – a highlight of his week. We were on vacation. The email notification from his dad to the school of the change in schedule was never received.  My grandson noted the expected change, rearranged his after school routine with his teachers.  Presence, confidence, comfort, acceptance. Environment, self-confidence nurtured. Driving his own life. Some don’t have my grandson’s fortune.  They have tenacious, dogged, self-preservation – I’m driving my own life, dammit! Some have one of these characteristics, but are unfamiliar with American culture and language or American health care culture or language. They may find themselves in dire straits.  They benefit from guides with a road map and interpretation. But can the desire to drive your own journey be created with classes and tools?  Probably not. Plenty of need and opportunity for guides, classes, and tools for those whose fires are banked and need stoking.