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Kissing the Boo Boo

By Advocate, Caregiver, Consumer, Informaticist
Health care is a tower of Babel. It’s the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don’t understand the language or culture of the people they support.  Caregivers often don’t really understand the person who they care for even if they love them. Who really understands another’s pain? People in one profession often don’t understand other professions. Few professionals or people at the center of care understand technology, policy, or insurance speak.

Here’s a stark example of the divide between the health industry (professionals, consultants, and information technology) and people at the center of care (patients and caregivers): For several years I have talked with anyone I can about a basic piece of information needed when a person has an unexpected health emergency in an unexpected place (an emergency room visit). What works for me when I’m in pain and what doesn’t?  What works for me when I’m scared and what doesn’t? Every caregiver I’ve discussed this with says, Oh yeah. Absolutely. Almost no professional, consultant, or technology person has even understood the question. It’s like I’m speaking Klingon. As a parent you know when kissing the boo boo works and when it doesn’t. When they’re scared some want to be left alone, others want you to hold their hand, others respond to specific music. Some people react badly to a particular medication, some react well to very small doses.
I’m trying to understand this divide. Aren’t people in the health industry also people at the center of care? Why doesn’t the Continuity of Care Record (CCR) and Blue Button Plus include this basic information? (The CCR document is used to allow timely and focused transmission of information to other health professionals involved in the patient’s care – medications, allergies, previous surgeries, diagnostic history). It would be a challenge to figure out how to do this, but isn’t it worth it? How can we bridge this gap?

Authority and confidence does NOT equal right

By Caregiver, Consumer, Leader, Musician

I play saxophone in a combo – I’m the only horn. I come in with the melody – after we’ve improvised – with authority and confidence. My teacher tells me, “come in strong whether or not you’re right. The band will adjust. Better than hesitating and coming in weak.”

I thought about this when I was in a meeting the other day with a labor lawyer and benefits consultant. They both sounded authoritative and confident – and had opposite opinions. I spent as much time watching the strength of their presentation as thinking about whether their advice was right for the agency.

I recall that my 17-year-old cousin recently expounded about the biology of memory with authority and confidence: “You sure speak with authority and confidence,” I noted. “Sure,” he said with a proud smile, “I’m on the debate team!”

Authority and confidence and being right – not necessarily connected.

As a nurse I watch the expression of authority and confidence often from professionals and see how it affects people at the center of care and their caregivers. It’s hard to separate strength from right. One of the reasons I’ve chosen my doctors is that they can sound authoritative and confident, but they engage me in the question of what’s right for me.

A wise person once advised me, “when someone speaks to you with force, either positive or negative, imagine blue smoke coming from their mouth. Let the blue smoke pass you by before you consider the words generating that smoke.” 🙂

That Sinking Feeling of Stress

By Advocate, Caregiver, Consumer, ePatient, Family man, Musician
You know that sinking feeling you get in the pit of your stomach when something is seriously wrong?  Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you think you’ve made a serious mistake, grief. It’s the fight or flight stress reaction.  Today I got that sensation when I was playing my sax, trying to memorize a piece. I so struggle with memorization-always have-from the days of anatomy and trying to remember bones.  Anyway, I thought,why the heck am I feeling this stress reaction playing music?  I’ve felt it more often lately-stress at work mostly. It affects my sleep, I struggle to focus. It’s an energy sucker. I only have so much gas in my tank-I hate wasting it on this stress reaction. What can a person do? I’m not one that’s had success with meditation. There are some interesting tricks:  I do love the one of pressing on the space above my upper lip below my nose.  I think it’s so comical it helps for a second, but doesn’t last past the press. Focused breathing deeply always works, but again doesn’t last. Talking to someone, getting whatever off my chest occasionally works -and it lasts.  There’s compartmentalization, denial – I’m not too good at those either. My PCP gave me Ativan to take before I go to bed, but I haven’t tried it. Actually, just having it in the cabinet has almost eliminated my need for it. Powerful stuff, eh – proximity without ingestion. Stress is a part of life. Unavoidable, part of the human condition. The challenge is to keep the cycle short, less frequent.  How do people manage who have this sensation all day for days, weeks, months, years on end?  Must be crazy making. Managing stress is a magic lever of best health.

Walking and Chewing Gum at the Same Time

By Consumer, ePatient, Family man, Leader, Musician
As LBJ said about Gerald Ford, I can’t walk and chew gum at the same time. Yesterday, while rehearsing and improvising on the baritone saxophone, I reflected on my continued difficulty keeping my place in the tune while improvising. Either I listen and keep my place or I improvise, get lost, and lose my place – so frustrating. It feels like multitasking and I’m notoriously bad at multitasking.   I notice that some others in the combo, don’t lose their place, but they lose the groove. I seldom lose the groove – it’s in my bones – I lose my place. H’m, feeling the groove doesn’t feel like multitasking to me, but does to someone else. Maybe if I play much less while improvising and focus on the chord changes and the structure of the tune I would be less likely to lose my place.

As a catalyst for change at work, my challenge is to listen, feel the rhythm of the work flow and be a catalyst.  The more active and frenetic I become as a catalyst, the less I listen. Not so different from improvising. Listen more, feel the groove, do less.
How about as a patient? Listening to my body, understanding the machinations of the world around me, and picking one or two routines or habits at a time to work on. Listen more, feel the groove, do less. Might work.

Work-Life Balance

By ePatient, Musician
Once again, I’m self-focused as I transition from sabbatical to full employment.  This too will pass:) After 2 weeks I’m acutely aware of my struggle to keep up my exercise, diet, family time, and music, not to mention all the non-work professional activities that accrued during my sabbatical. Fortunately, my new work environment is both intensely busy, focused, rewarding and actively supportive of work-life balance. My strategy so far is to book family time first, only a little scaled back. Then I’ve cut my music time easily in half, but I haven’t yet figured that out – not cutting any group playing – the combo and big band. Two gigs coming up. The job has a jam once a month. Longer between lessons? Oh, lord. Exercise is harder. Maybe ride the trike every third day and not every other day. Strangely, diet is easier. I’m so much more deliberate about my meals – packing a lunch. I think my diet is better and I’m losing the few pounds I’ve gained during the sabbatical. Longer between massages? I hate to. Makes so much difference in my overall well-being. I will maintain this weekly blog. You all are a gas and a half. Much less TV. What’s suffering most is time with my wife. I definitely need to schedule some date time!! Work-life balance: a magic lever of best health.


By ePatient
Started a new job – first day – a form asked if I was disabled – along with race. Hmmmm. I checked yes. Last week, went to a church function with my mom. Several people with canes and walkers, including me. Buffet style meal. Disabled first in line with gentle insistent assistance. I was guided to that pre-served group. I can manage my own plate with my cane hooked on my arm, but what the heck, they were nice.

According to the World Health Organization: Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
I have Multiple Sclerosis. I drive to my full-time job, I play my saxophone 4-6 hours a week.  I can ride my recumbent trike 10-15 miles at a time. I can walk about a mile, then my left foot drags. I play with my grandkids. Takes me a while to get up from the floor. I can’t run. I can’t dance. I can’t stand in place too long. If I spin around I go kaboom (as my 2-year-old grandson says). I need a cane about half the time, I just don’t know which half. When asked what jungle animal I should be, my four-year old grandson says, one with balance. I have double vision some of the time. Can be annoying when I’m reading music. I have trouble reading white on pastel. I often don’t know where my body is. I will run into the door jamb if I’m not careful. I have to hold on going up and down stairs. So I guess I’m a person with disabilities. It’s a health hat.


By Leader, Musician
Composer, John Cage said, “Wherever we are, what we hear is mostly noise. When we ignore it, it disturbs us. When we listen to it, we find it fascinating.” As a change agent in healthcare I find myself filtering the noise. Noise can be a cacophony of voices or motion without much meat. I’m annoyed with the din and peeved at the duplication of efforts. In my jazz combo I listen to the noise. We’re student amateurs after all. I hear us struggling with technique on our instruments, anxious to keep our place in the roadmap of the tune, vulnerable and overwhelmed with lack of confidence. Buried in the noise are some inspiring licks. Fascinating – what might listening to the noise in healthcare do for us?

Improv and Best Health

By Clinician, ePatient, Musician

Why improv and health? Health is unique, of the moment, a journey. A different possible riff every moment. Successful maneuvering the roller coaster of dis-ease depends on religious taking care of what is well with your instrument; on you and your team dynamics; on the predictability and responsiveness of the tune: systems and infrastructure through which you journey; listening for the germ of truth in yourself, your caregivers, and professionals. Best health seeks simplicity: values, mission, common sense and of course chutzpah when you can afford it. The rest is commentary.

How is your health improv?


By Musician
As an amateur jazz musician I spend 3-6 hours per week working on improvisation.  In NY I studied with Al Golladoro, a virtuoso extraordinaire. Now in MA I learn from Jeff Harrington, a saxophone professor from Berklee College of Music, and for the past year I’ve played weekly in a student combo practicing improv under the direction of Dan Fox.  I’m blessed with the chutzpah to venture outside my comfort zone. I’ve landed on several fundamental principles while studying improv:

  1. Listen first, play next
  2. Know the underlying tune
  3. Keep my place
  4. If nothing else, feel the rhythm
  5. Less is more
  6. A good sound beats dexterity
  7. Forget it all and have fun
The lessons of improv serve me well as patient, caregiver, nurse, and leader. Subsequent blogs will dive into improv and the other hats, but I can distill it down as follows:
  1. Listen first, act next 
  2. Excel as a team member on a good team
  3. Know the goal and the related systems
  4. Keep it simple
  5. Enjoy life