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grief Archives - Danny van Leeuwen Health Hats

I am Not My Condition

By | ePatient | One Comment

I’m Disabled. Who labels themselves? Feels like crap. I applied for disability. Needed a psychological evaluation. Spent an hour with a psychologist. I spent that hour telling her about the effect MS has had on my life. MS is seriously annoying…. Came out feeling terrible.  “Oh man, I’m disabled. My life has been so disrupted. I can’t do what I once did. Woe is me.” Lost my pathological optimism for a day. I’ve had to train myself over the years to feel sorry for myself. “OK 5 min, feel sorry.” Enough of that. It’s too boring. When I feel sorry for myself my symptoms are worse. Direct correlation.

Lots of people have it worse than me, much worse.   Read More

The Personal Health Journey

By | Advocate, Caregiver, ePatient | No Comments

The metaphor, Personal Health Journey, works for me. We’re heading somewhere for health whether on purpose or not. We’re never actually there. It’s continual – until it isn’t. Sometimes we have a map, sometimes we don’t. Map or not, we’re still heading somewhere:  work, the grocery store, our in-laws, the beach. There’s always decisions to make on a journey: stop for gas, rest, sight see, go left, go right? Same with the health journey.

The journey is different if we’re well, acutely ill, chronically ill or dying. Our aspirations are different.  When we’re well we either don’t think about our health or we want to stay well. When we’re acutely ill (now we’re a patient), we want to get over it. When we’re chronically ill we want to live the best life possible. When we’re dying we want to live as long as possible or live as best as possible OR both. The journey is different, too. For the well it’s Inertia or Select Personal Health Goals-> Act and Track->Deal with symptoms when they arise. For the acutely ill it’s Symptom->Diagnosis->Treatment->Recovery->Back to Well or on to Chronically Ill (thanks to John Mitchell at Applied Marketing Science).  For the chronically ill it’s Disbelief->Grief->Get help (care and treatment)->Recalibrate->Maintain->Give back->Relapse (and back again). Read More

Penny Whistle for Father

By | Family man, Musician | 2 Comments

Who knew he loved penny whistles?  The pianist who accompanied his cello-playing friend on piano for years told a story yesterday at his funeral. At Christmas last year, this father who I knew as awkward, serious, unemotional, religious, conservative, classical music-loving, got the church choir penny whistles and led them in a performance of Good King Wenceslaus. While the story was told, the priest pulled a penny whistle out from the pulpit and tweeted a few notes.  “It’s there to keep me humble.”

I consider myself a good read of people. 50-75% of the time I’m spot on (That’s 25-50% spot off).  It leads me to an occasional empathy-challenged state. A penny whistle can tip the balance.

Happy Father’s Day all you fathers.  I love the father in my sons. Here’s to you, Cliff, a faithful reader of this blog. You’ll be missed!

Coalition for Compassionate Care of California

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | One Comment


I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations). Read More

Thoughts on FATIgue

By | Caregiver, Clinician, ePatient, Family man | 8 Comments

Exploit the relative dry spots in the wet blanket of fatigue.

Sadness and fatigue are kissing cousins.

So are chronic illness and fatigue.

Close your eyes, give in to fatigue.

When fatigued, turn off the news.

Passion finds and expands the cracks in fatigue.

Bone-tired fatigue? Take 2 deep breaths. Move something, anything.

Belly laughs exhaust fatigue.

Trump fatigue. #IamAMuslim.

A lethal stew: worry, annoyance, bitterness, and fatigue.

Fatigued? Love yourself. Whatever you do today is enough.

Fatigue loves hugs.

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.

Experiences, experiments, reflection, action

By | Advocate, Caregiver, Consumer, ePatient, Leader, Researcher | No Comments

This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

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.

Another threshold

By | Caregiver, Clinician, ePatient, Family man | 6 Comments

My long-time friend, Glen, died last week. The first thing Glen and I  did together in Detroit, 1969 was to go into elevators and face the back to freak people out and then we got stoned. Glen helped my wife and I set the poles (trees) in the house  we built in West Virginia.  He and his wife had wanted us to move to Maine and live with them, but it was too cold for us. Glen died of brain cancer. His children took care of him for the last six weeks of his life in his home. Not a nurse among them. Read More

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.