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grief | Danny van Leeuwen Health Hats - Part 3

Experiences, experiments, reflection, action

By Advocate, Researcher, Caregiver, ePatient, Leader, Consumer 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, ePatient, Clinician, Leader, Consumer, Family man, 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, ePatient, Clinician, 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, ePatient, Clinician, Leader, Family man 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, ePatient, Consumer, 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, Leader, Family man 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.

Grief Subsides, Inch by Inch

By Caregiver, ePatient, Family man 2 Comments

I’m reading Scott Simon’s book, Unforgettable. A son, a mother, lessons of a lifetime. Beautifully written and so close to home. Scott Simon’s book resonates for me. It’s been four months since my mom died. Like Scott Simon, I, too, laid next to my mom in her bed telling stories. Before dying I was grossed out at the idea of laying in bed next to her. Now I treasure those moments. I feel her loss every day.  Actually, it’s almost every day now, not every, every day. I resent that it’s not every day. Last November I was so upset that the 11th anniversary of my boy, Mike’s death passed without me remembering. I cherish the bittersweet sadness and the exquisitely tender spots of these memories. What have I become when I forget those who color my tapestry? Yet I am recovering. Very slowly regaining my strength and my center. The surrealness of loss and grief subsides inch by inch. Thank god. I couldn’t stay floating in that ever-deepening well of grief. Grief is again becoming a quirky, intriguing companion. Oh ma, where are you now? Do you have more stories for me? I have so many for you.

Caregiver recovery – spiritual, then mental, then physical

By Caregiver, Consumer, Family man 3 Comments

I took advantage of some rest and relaxation this weekend at Kripalu Meditation and Yoga Center. After six months of intense caregiving of my mom with frequent bi-coastal travel, I’m feeling an upsurge of my own MS symptoms. I spoke with someone whose mom died the same time as mine, who spent 13 years caregiving  and managing his mom’s Alzheimer’s journey. My six months seems so small in comparison.  Support and recovery of caregivers – so important. Remarkable how run down we can get. Running down spiritually, mentally, and physically. Caregiver recovery is like any recovery – recovering spiritually, then mentally, then physically. One minute meditations seem to help – appreciating a shower, a chocolate chip cookie, my wife’s smile, my sons, their families, my co-workers. These mini-meditations give space for a bit less worry, and an ounce more of strength to manage physical challenges.  Honor the caregivers, help the helpers.

Adjusting to new chronic illness

By Advocate, Caregiver, ePatient, Consumer, Family man No Comments
Adjusting to new chronic illness involves moving away from traditional medical/doctors/health care system to controlling controllable stress and recalibrating function.  “Eventually, you adjust to a new normal,” says Lisa Copen, founder of Rest Ministries, Inc.  Controllable stress takes many forms – toxic relationships, fear, anxiety, impatience, sleeplessness…. Managing those stresses creates space and reserves to manage uncontrollable stress – grief, new meds, less abilities, etc. Getting help managing toxic relationships has out-sized impact.  Toxic relationships wear you down, drop by drop. Counseling can help here. Meditation and yoga pair well with impatience and anxiety.  Have fun: when I got my multiple sclerosis diagnosis I had to redouble my efforts to have fun – more clearly defining what having fun meant to me and including fun as part of everyday life at home and at work. Spending time with my honey and my family, playing music, reading, making a difference, mentoring. Recalibrating function – adjusting to the new you: Physical or occupational therapy can help to manage changing abilities to carry out activities of daily living (meals, elimination, movement, dressing, chores). Community services can help with transportation and family support, among other things. We often expect that the traditional medical/health care system should help with stress and function. That’s not their core business, they’re often not good at it. Those with new chronic illness need to look elsewhere and add to their health team. Right now, insurance doesn’t pay well or doesn’t pay at all for controlling controllable stress or recalibrating function. Maybe that will change as incentives move from fee for service to capitation (paying separately for each service to paying a set amount per person).

Take a break – now

By Caregiver, ePatient, Consumer, Family man 5 Comments
Today I’m bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious – tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most need these skills. Mental health challenges can make it harder to identify – even mask – and work with medical issues. How do we rejuvenate from being run down from physical or mental ill-health? How do you take a break-get some rest? I find that small things help – wear the brightest bow tie when I feel the worst, have a piece of chocolate, cuddle with my honey, take 5 minutes to bitch and moan, drink lots of water, take a power nap, listen to Paul Simon’s Graceland, enjoy smaller meals, laugh, cry, or sigh, eliminate manageable stress, exercise, get a massage. What works for you?