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Recovery

Oct 24 2021
Love0

No Dip Without a Rise #146

By Musician, Podcasts

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I’m not the sharpest knife in the musician drawer. Disheartening. I wish I were better. If wishes made me play better… All I can do? Keep at it. In the last two years. I’ve gone from “I can’t do this, I’m quitting” to “I need to be better.” One foot in front of the other. If this were health, I’d advise that you never get better in a straight line- always many dips and rises. No dip, no rise. I do like the rise. Gotta live with the dips.

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Sep 19 2021
Love0

Crises: Opportunity for Children to Cope #142

By Advocate, Clinician, Leader, Podcasts

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Some people pull hand-over-hand for strands of hope and opportunity in the quicksand of tragedy. The entire family strains to recover from the grief of addiction. I appreciate Sarah Cloud’s person-first approach. People are expert in their own lives. Expert means they know much. Experts still need help connecting dots, creating and executing plans, facing pain, and loving self. Check out Sarah’s series about Mama and Papa Paca. 

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Nov 05 2017
Love0

From the Inside Looking Out

By Caregiver, Clinician, Consumer, ePatient, Family man

At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy.  Afterwards, someone at my table said,

From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.

I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team.  Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.

See also other posts about Improv and

Patient-Centered Outcomes Research Institute

Learning from What Doesn’t Work

Aug 13 2017
Love0

The Personal Health Journey

By Advocate, Caregiver, ePatient

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

Dec 29 2016
Love0

Re-calibrating – Finding Balance

By Caregiver, ePatient, Family man

So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.

I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance.  I feel it acutely. I find it easier to be active attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space.  More optimistic, better spirit.  Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.

Sep 04 2016
Love0

Nowhere We Can’t Get to in an Hour

By Advocate, Family man

In our 30’s we lived in West Virginia – very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming – garden, bees, fruit trees, chickens. Another community was the town emergency squad where I volunteered as a paramedic and my wife drove the ambulance. Read More

Aug 07 2016
Love0

The Thorny Thicket of Feedback and Advice

By Clinician, ePatient, Leader

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.

What’s the difference between advice and feedback? According to the dictionary,

Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.

Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.

They blend together for me.

Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.

So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Read More

Nov 08 2015
Love0

I thank you God for this most amazing day

By Advocate, Caregiver, Consumer, Family man

I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes.

e.e. cummings

An email this morning from the library told me that the reserved book, Wright Brothers by McCullough, had arrived. My big stressor was that yesterday I picked up another book, Quicksilver by Stephenson – all 925 pages. OMG, how can I get all that read in a week!!! Nice stressor, ehh? Also yesterday, my acupuncturist told me I hadn’t looked happier in  years. Wow:) Read More

Sep 21 2015
Love0

Belonging – a matter of perception

By Caregiver, Consumer, ePatient, Family man
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.
Sep 13 2015
Love0

Finite disappointment, infinite hope

By Caregiver, ePatient, Family man, Leader

“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.