Tag

music

What Do You Do for Fun?

By | ePatient, Musician | One Comment

Yes, you concerned readers, I’m still playing my baritone saxophone. I’m taking lessons every two weeks via Skype. No travel time! I’ve upped my playing to 4-6 hours a week. More structured, too: scales, chords, simple rhythms. I still lose my place improvising, a lot. But I’m less in my head, thank you very much, what a relief. I’m paying more attention to my sound. I love the sound of the bottom (the bari sax is very low). I’ve changed my mouthpiece and reeds.

Devoting time to self-care – pretty fascinating in its own right. A stock question when I talk with people: what do you do for fun? Quite fascinating, try it. Knitting, dancing, jogging, singing, grandkids, soccer, hiking, needlepoint, painting, riding horses, writing, yoga, traveling. My ability to predict what a person does for fun is marginally better than my Lotto predictions. Some say I don’t have time for fun. Or, I’m ready to retire, don’t know what I’ll do. This makes me sad. Very sad. Read More

Danny playing bari sax

I’m Gonna Quit

By | Advocate, ePatient, Musician | 10 Comments

I’m ready to quit playing my horn. I can’t seem to bring what I’ve learned while playing at home (practicing) to rehearsals. I’m lost.  I have fat fingers. I can’t find a 2 or 4 measure rhythmic pattern that works. I lose my place. I can’t seem to learn the language. I definitely I don’t have the muscle memory yet.  It’s disheartening. I’m used to being good at what I do. I was a great bedside nurse. I was a really good boss. I’m a prolific and engaging writer. I’m sought after for my patient/caregiver activism. Music, not so much. I’m persistent, not talented. I’m humbled, playing music. Part of  the secret sauce to managing my Multiple Sclerosis, is that I keep manageable stress to a minimum. Being a boss and employee was too stressful, so I stopped. I don’t have secrets. My close relationships are fresh and up-to-date.  I adapt well to my slow reduction in function. Playing is stressing me out. Wait, I haven’t had a sax lesson in months.  My teacher is very good. Positive and creative with my fluctuating abilities. Tells me to play less.  I didn’t stay at the top of my game in my 40+ year career without coaching and mentoring. It wasn’t possible. I play for a reason. It’s one of two outcomes I track with my doctors (falling and playing the saxophone).

I’m not quitting. Thanks for listening.

Failure is Under-Rated

By | Advocate, Caregiver, ePatient, Leader, Musician, Researcher | 2 Comments

I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy.  Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said.  No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time.  It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!

A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying.  Same with learning to talk. As an adult, I find failure a motivator to try again.  As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.

For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.

Failure flavors humility and empathy.  My best stories are of failure – my failures. People laugh with me.  We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next?  What did you learn? What did you try? What eventually worked?

So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well.  Persist and laugh. Eventually, who knows?

Photo by Nik MacMillan on Unsplash

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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!

Taking a Risk

By | Advocate, Caregiver, ePatient, Musician | No Comments

OMG, I’m upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I’m adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help You? For topics we care about and related resources. I’m determined to create it myself – much like my wife and I built a house – seriously ignorant, reading instructions, tutoring, advice, and making significant mistakes while putting one foot in front of the other persistently. Learning something completely new is a frustrating gas. Frustrating until you learn a bare minimum of the language, get the right tools, building a support team, and finding the growing mindset of I can do this!? Frustrating when you mess up big time – like a couple of days ago when I unknowingly loaded 13 sample posts with my new theme and they went out to all of you looking like spam. (Thanks for letting me know and hanging in there with me.) A gas when you stumble upon or are pointed toward a solution, when you can find the solution a second time, when you can start to see the creation, and when someone else appreciates it. Gosh, this sounds like living or supporting someone with a chronic illness, living in another country or community, playing music, going to school, or starting a new job. Read More

Stranger in a Strange Land

By | Advocate, ePatient, Leader, Musician | No Comments

OMGdpdrmultiface, where’s my wife? I need to be rescued. I can’t do this. I can’t be here. My pounding heart, my rapid, shallow breathing. I can’t be here. Where’s my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land of the medical industrial complex?

No, I’m on a Blues Cruise. I want to play the blues with other amateurs. They are the amateurs that are not headliners. They have blues bands of their own and play regular gigs wherever they live.  I am an old, baby amateur. I’m the only horn player at this session. I don’t know the tunes. I don’t know what key they’re playing in. I am SO way over my head. It could just as well be a gaggle of 8-year old’s trading Pokémon cards. Read More

Life literacy – If you can’t explain it to a six year old…

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | 2 Comments

I plstudentsay baritone saxophone in community Latin and blues funk bands.  Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient Centered Outcomes Research Institute).  I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study).  I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at thesparents-teachers-meeting-vinod-school_b2840c36-5634-11e6-bc43-9f8bec77897ce sessions. I also take part in calls for OpenID HEART Working Group that intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago. Read More

Scared?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader | 3 Comments

My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: “What works for me when I’m scared and what doesn’t?” You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed in the ER. In 5+ years of advocacy I’ve been unable to generate interest from IT wonks. Anyway, I was whining about my ineffectiveness to Phyllis.

So let’s break it down a bit more. I’ve never met anyone in an unexpected health situation who wasn’t scared. Scared looks like: startled, numb, stomach ache, sweating, heart racing, catastrophizing , panicked……

It’s good to know in advance what helps settles me down. Deep breaths, meditation, hold my hand, a good laugh, quiet, a walk, listening to John Lennon, my wife and family, more information, respect from those around me plus listening to me, Ativan. My mom needed a hand to hold, control, opera. My friend needs someone from his immediate family and information, reduced stimulus, quiet, to be kept warm, headphones with classical musical. We all can use something. The unexpected health care situation can vary. My chronic condition, MS, could flare up – known yet unexpected.  You could break your leg – an accident plus pain. You could have a heart attack or kidney stones – sudden, debilitating, with pain. You could be alone or with someone you trust – very different scenarios. Read More

I’m So Discouraged

By | Caregiver, Clinician, ePatient, Family man, Musician | 7 Comments

Several times this week I heard a variation on: I’m so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple things. One person, me, said it about losing weight and soloing. Two things strike me here. First, sucking and second sliding back. Can’t we give ourselves a break and celebrate that we’re trying? I’m trying to meditate every day, lose weight, improve my mental health, solo on my sax!!!! Yippee for me. Yippee for us!!! Recovering, healing, learning, changing habits doesn’t happen in a straight upward line, steadily better. It’s two steps forward, one step back. It’s up and down, first wildly so, then smaller cycles of up and down, over time with forward progress. Looking at just 2 data points only frustrates us, since we tend to recognize the down after the up, rather than the up after the down. In each of the scenarios someone heard the other and provided a good job, way to go, keep it up, keep me posted, call me anytime

I honor you’re work of healing, learning, recovering. Good job, way to go, keep me posted, call me anytime.

Disabled. Looking for Work. Reference

By | Advocate, Consumer, ePatient, Family man | 2 Comments

Here’s the reference I didn’t accept on LinkedIn:

He’s seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can’t keep a job.  Has the attention span of a gnat, flitting from one thing to another. Needs significant help focusing and limiting the scope of his work. Moves way too fast, going for the latest shiny thing, tested, proven, or not. A major joiner. Set some limits for Pete’s sake. Sits on expert panels without real expertise in anything. Has to keep lists of books he’s read so he doesn’t read them again, but forgets to check his list. We’ve always done it this way is a red flag for him. He should shut up and listen for a change. Has a loose relationship with the truth. Would rather tell a good story. Needs a fact checker. Loves to say, God willing and the creek don’t rise. Where does he think he is? W Virginia?

OK, he’s sort of disabled. Takes advantage of his get-out-of-jail free handicapped parking placard. After all, he can walk a couple of blocks.   Frantically trying to stay healthy. Massage, acupuncture, chiropractic, counseling, meditation. Give it a rest already. Cut his foot with a chain saw when he was an ED nurse and paramedic. Then he went to his son’s second grade class to teach first aid  Doesn’t know the meaning of safety. A truly strange bird. Was in the movie, Woodstock, when he was 17, calling his mother. Now 63, he’s still a momma’s boy. Was in a Life magazine cover story, You’ve Come a Long Way, Buddy. Men’s Liberation. For real? Can’t lie to save his soul. Don’t know about diversity, he’s prejudiced against stupid people who can’t get anything done. Can’t stop talking about his grandkids. He’s a boring Johnny one-note. Thinks he can play saxophone.  Please!  Loves to dance – in his head. Who is he fooling? Pokémon illiterate. Just ask his grandson. Does laundry and takes out the garbage, but doesn’t cook enough. Leaves the entry way door open when it’s freezing outside.  Appreciates clean running water and weekly garbage pickup. Every week! Give it a rest already. Built a house with his wife without ever having built anything before. Lord, get some experience before you go off halfcocked. Won’t stop correcting lab technicians who ask him to confirm his birthdate that they read to him. Arrogant.  Still hot for the same woman after 40 years – get a life. Balding, needs a hat. Any hat, doesn’t care.

 

I know it’s tough to get a job as a disabled person.  But, hire this guy? Be very careful, count to 10.