Random Thoughts from a Restless Mind

Dr. Darrell White's Personal Blog

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Posts Tagged ‘musings’

The End of the Age of Volunteerism

Ladies and gentlemen, we are gathered here today to mourn the death of the Age of Volunteerism. While there exist tiny spaces where true volunteers live and thrive in a bilateral exchange of freely given goodwill, by and large volunteerism has been extinguished by the actions of its historical recipients. Sunday marks my last day ever of hospital ER call, the end of 2 years of receiving token payment for making my expertise available following 25 years of doing so for free. My experience is typical, as is this denouement.

Once upon a time all of your doctors were in private practice. We all had tiny little cottage businesses, did our work, and billed you or your insurance company for the work we did. Some of us worked in tiny little groups, but it was the rare doctor who was part of a large group or business whether in a big city or out in the country. Even the slickest Madison Avenue internist was basically a country doc, just with a better, more expensive wardrobe. In addition to having a greater familiarity with our patients we also enjoyed a very clubby relationship with all of the other doctors where we practiced. There was a collegiality, a sense that we were all in the struggle together. Folks who shirked their duties, foisting them off on other docs, were quickly educated about proper protocol or left to toil alone.

Hospitals were different, too. Local or regional, they were hardly the gargantuan mega-businesses they’ve become. The org chart was shallow, and most local doctors were on a first name basis with the few administrators on the hospital payroll. You took call for the ER as a volunteer; the ER respected that you were donating your skill and your time and handled everything it could before calling you. Same thing for consultations. Your colleague only called you if they couldn’t figure out a problem or ran out beyond their scope of practice. There was a faint air of apology with each request, and a definite unspoken appreciation for the help that would be given. You helped because you were appreciated.

This is really no different from all manner of volunteerism in America. Smallish, closely knit organizations depending on the goodwill and generosity of members of their community pitching in to ensure success. Think local memorial 5K races, or CrossFit Games Regionals in the days before ESPN or the Home Depot Center. Countless small private schools that depended on the largesse and time offered by the families who sent their children there. You gladly accepted the opportunity to volunteer because you knew that without you the organization would not be able to function. You also knew that the recipient of your generosity not only appreciated your contribution, they really had no other options. Not only that, but if that organization somehow existed in your professional space you knew that it would never, not ever, abuse the trust necessary for volunteers to continue.

What happened? Money. Money and size and the distance that they create between an organization and its volunteers. Let’s go back to the hospital and the ER for a minute. Where once your efforts as a volunteer were deeply appreciated and those efforts rewarded with respect and care for your time and your expertise, the growth of employment of doctors by hospitals opened a gap between colleagues. No longer was there the esprit de corps, the shared notion that the primary target of our efforts was the patient was replaced by so very many doctors by the reality that they worked first for a business as faceless and uncaring as GM. Work that was once done by your colleague was now pushed to the volunteers whenever possible. It’s cheaper that way. Worse, boxes to be checked by the employed (to maximize revenue and minimize risk) meant demands made of volunteers, not requests. Worse, still, were discoveries that some “volunteers” were more equal than others: they were paid.

Innumerable examples are there for the picking. Some times it was just a case of laziness. Other times the insult was a clear effort to dump work on the volunteer. A critical care fellow requested a consult for acute narrow angle glaucoma. For those of you not medical this is one of the few “drop everything and go” consultations in eye care. When I arrived in the ICU I found a young patient with a black cornea who was mildly uncomfortable. I did what every highly experienced specialist does when they start a consultation, I asked the patient: “Hey, what’s up with your eye?” Turns out they had a blind, painful eye as the result of a surgical mishap, and surgery to remove the eye was already scheduled. Their discomfort was because none of the eye medications had been ordered; the fellow never asked. No doctor (or nurse) would have allowed this to happen in the Age of Volunteerism.

While this is nothing short of tragic in health care, it was inevitable once medical businesses were incentivized to grow ever larger. It is not confined to health care by any means. How do you think that volunteer at a Spartan Race feels when he learns how much his “team leader” is being paid? Have you ever “discovered” how much the Executive VP of your favorite professional organization is paid? As a people we Americans are generous to a fault. That generosity usually continues right up until we discover that we have been duped, and even worse that we have been purposely duped by the people who run the organizations for which we volunteer.

And so we gather here to mourn the passing of the Age of Volunteerism. Like so many things of wonder and goodness there remain pockets of resistance, little oases where the goodwill, honesty, and appreciation beget the kind of ebb and flow that made things so much better, kinder, more collegial at the apex of Volunteerism. My friend Tom Gardner was just named the president of the Society of Alumni of our Alma Mater. Tom has given tirelessly of his “spaces”, his timespace, brainspace and emotionalspace to help shepherd tiny Williams College as it flows on though time. Is this truly different? A tiny refuge from the Zombie Apocalypse of corporatization of all things to which we once volunteered?

We can only hope. Hope that Tom and those like him who continue to find places and causes where their volunteerism is met with what we in medicine have had to bid farewell. We can only hope that there will be places where being a volunteer means receiving the respect and appreciation and even a kind of love in return for what we have given. We can only hope that there will continue to be places where the incessant drive to grow ever bigger, size measured on a spreadsheet rather than by heart, will be resisted. For if it can happen in medicine, if volunteerism can be killed in what is arguably the most noble of all endeavors, I fear that it is doomed everywhere.

We mourn the end of the Age of Volunteerism. We wait with equal parts sadness and fear for arrival of whatever comes next.

 

Sunday musings 10/14/18

Sunday musings…

1) Feral. Abbie the Wonder Dog was feral for the first 6 or 9 months of her life. I can’t remember exactly. She was live-trapped and rehabilitated by a Border Collie rescue organization in north central Ohio. When she frustrates me it is always helpful to remember this.

Having a formerly feral creature living in our midst is also a very good counter to the frustrations of modern life. I try to remember how far I am from true privation whenever I find myself railing agains the insanity and inherent indifference that the world clearly has toward my existence.

A quick thought of my clever (read: sneaky) pup is usually all it takes to quell my urge to explode when I encounter the tragedy of a poor internet connection…while hurtling through a mountain pass in a car going 80 MPH.

2) Test. Some 10 years ago or so I proposed that a true measurement of health should be possible. Something that combined the most basic of classic medical knowledge (weight, %BW fat, BP, Cholesterol, etc.) and the breakthrough notion that physical fitness could be measured and tracked. My theory included the necessity of including some sort of measurement of “well-being”, a mandate that was initially openly mocked but seems to have been rather meekly accepted as both logical and necessary.

Creation and launch of such a value, call it “Total Health” or something along that line, has fizzled due to the lack of consensus–nay, even interest–in coming up with a way to measure Fitness. Imagine, in a place like CrossFit where the very definition of Fitness was created, no one save me and a tiny group of equal obsessives has so much as let fly a tiny trial balloon. The original owners of CrossFit LA were the first to use a standard entry test. 500M Row/40 Squats/30 Sit-Ups/20 Push-Ups/10 Pull-ups. I suggested pulling from both traditional sources (The President’s Fitness Test) as well as CrossFit and the larger endurance communities: 2:00 each of PU/Push-Up/Sit-Up/Squat, 1RM Deadlift, 1 mile Run. We ran a competition once called the “Fittest Eye Doc” using this.

What is necessary is a test that is a) doable by the general public, and b) capable of creating a single value that can be measured and tracked. Once that is done mathematicians and statisticians can be let loose with the various factors and given the task of coming up with a formula that includes all three categories. Why bring this here, again, when thus far my previous dozen or so postings have been met with crickets? With the pivot to health and the rapid build-up of a cadre of physicians who are at least superficially interested in using high intensity exercise for the purpose of increasing health, I am hopeful of a broader dialogue that comes to an agreement on a test.

Challenge: create a test of fitness that is broadly accessible in all ways (scalable) that can be included in a definition of health. 3-2-1…Go.

3) Volunteerism. Ladies and gentlemen, we are gathered here today to mourn the death of the Age of Volunteerism. While there exist tiny spaces where true volunteers live and thrive in a bilateral exchange of freely given goodwill, by and large volunteerism has been extinguished by its historical recipients. Today marks my last day ever of hospital ER call, the end of 2 years of receiving token payment for making my expertise available following 25 years of doing so for free. My experience is typical, as is this denouement.

Once upon a time all of your doctors were in private practice. We all had tiny little cottage businesses, did our work, and billed you or your insurance company for the work we did. Some of us worked in tiny little groups, but it was the rare doctor who was part of a large group or business whether in a big city or out in the country. Even the slickest Madison Avenue internist was basically a country doc, just with a better, more expensive wardrobe. In addition to having a greater familiarity with our patients we also enjoyed a very clubby relationship with all of the other doctors where we practiced. There was a collegiality, a sense that we were all in the struggle together. Folks who shirked their duties, foisting them off on other docs, were quickly educated about proper protocol or left alone.

Hospitals were different, too. Local or regional, they were hardly the gargantuan mega-businesses they’ve become. The org chart was shallow, and most local doctors were on a first name basis with the few administrators on the hospital payroll. You took call for the ER as a volunteer; the ER respected that you were donating your skill and your time and handled everything it could before calling you. Same thing for consultations. Your colleague only called you if they couldn’t figure out a problem or ran out beyond their scope of practice. There was a faint air of apology with each request, and a definite unspoken appreciation for the help that would be given. You helped because you were appreciated.

This is really no different from all manner of volunteerism in America. Smallish, closely knit organizations depending on the goodwill and generosity of members of their community pitching in to ensure success. Think local memorial 5K races, or CrossFit Games Regionals in the days before ESPN or the Home Depot Center. Countless small private schools that depended on the largesse and time offered by the families who sent their children there. You gladly accepted the opportunity to volunteer because you knew that without you the organization would not be able to function. You also knew that the recipient of your generosity not only appreciated your contribution, they really had no other options. Not only that, but if that organization somehow existed in your professional space you knew that it would never, not ever, abuse the trust necessary for volunteers to continue.

What happened? Money. Money and size and the distance that they create between an organization and its volunteers. Let’s go back to the hospital and the ER for a minute. Where once your efforts as a volunteer were deeply appreciated and those efforts rewarded with respect and care for your time and your expertise, the growth of employment of doctors by hospitals opened a gap between colleagues. No longer was there the esprit de corps, the shared notion that the primary target of our efforts was the patient was replaced by so very many doctors by the reality that they worked first for a business as faceless and uncaring as GM. Work that was once done by your colleague was now pushed to the volunteers whenever possible. Worse, boxes to be checked by the employed (to maximize revenue and minimize risk) meant demands made of volunteers, not requests. Worse, still, were discoveries that some “volunteers” were more equal than others: they were paid.

While this is nothing short of tragic in health care, it was inevitable once medical businesses were incentivized to grow ever larger. It is not confined to health care by any means. How do you think that volunteer at a Spartan Race feels when he learns how much his “team leader” is being paid? Have you ever “discovered” how much the Executive VP of your favorite professional organization is paid? As a people we Americans are generous to a fault. That generosity usually continues right up until we discover that we have been duped, and even worse that we have been purposely duped by the people who run the organizations for which we volunteer.

And so we gather here to mourn the passing of the Age of Volunteerism. Like so many things of wonder and goodness there remain pockets of resistance, little oases where the goodwill, honesty, and appreciation beget the kind of ebb and flow that made things so much better, kinder, more collegial at the apex of Volunteerism. My friend Tom Gardner was just named the president of the Society of Alumni of our Alma Mater. Tom has given tirelessly of his “spaces”, his timespace, brainspace and emotionalspace to help shepherd tiny Williams College as it flows on though time. Is this truly different? A tiny refuge from the Zombie Apocalypse of corporatization of all things to which we once volunteered?

We can only hope. Hope that Tom and those like him who continue to find places and causes where their volunteerism is met with what we in medicine have had to bid farewell. We can only hope that there will be places where being a volunteer means receiving the respect and appreciation and even a kind of love in return for what we have given. We can only hope that there will continue to be places where the incessant drive to grow ever bigger, size measured on a spreadsheet rather than by heart, will be resisted. For if it can happen in medicine, if volunteerism can be killed in what is arguably the most noble of all endeavors, I fear that it is doomed everywhere.

And so we mourn the end of the Age of Volunteerism. We wait with equal parts sadness and fear for arrival of what follows.

I’ll see you next week…

–bingo

 

Don’t Exist, Live.

After my first foray into Spinning my back seized up. Pre-CrossFit this was a rather common occurrence, but it’s been some 10 years since my last episode and I’ve been feeling a little sorry for myself. For as long as I have been writing these little ditties I have exhorted (both of) you to get out and actively live your lives; don’t just exist.  More than that I have tried to impress upon anyone who would listen how important it is to have people to live for. People who truly care that you are living among them. What follows is a re-posting of one of the saddest, most powerful stories I’ve ever heard.

 

“Billy Ray (not his real name, of course) turned off his implantable defibrillator (ICD) yesterday. Billy Ray is 44.

In my day job I was asked to evaluate him for a problem in my specialty. I was told he was about to enter hospice care and assumed that he was much, much older and simply out of options. I admit that I was somewhat put out by the request, it being Saturday and the problem already well-controlled. Frankly, I thought it was a waste of my time, Billy Ray’s time, and whoever might read my report’s time, not to mention the unnecessary costs. I had a very pleasant visit with Billy Ray, reassured him that the problem for which I was called was resolving nicely, and left the room to write my report.

44 years old though. What was his fatal illness? What was sending him off to Hospice care? I bumped into his medical doc and couldn’t resist asking. Turns out that Billy Ray has a diseased heart that is on the brink of failing; without the ICD his heart will eventually beat without a rhythm and he will die. A classic indication for a heart transplant–why was Billy Ray not on a transplant list? Why, for Heaven’s sake, did he turn off his ICD?

There is a difference between being alive and having a life. It’s not the same to say that one is alive and that one is living. It turns out that Billy Ray suffered an injury at age 20 and has lived 24 years in unremitting, untreatable pain. Cut off before he even began he never married, has no children. Each day was so filled with the primal effort to stop the pain he had little left over for friendship.

Alive without a life. Alive without living. Billy Ray cried “Uncle”.

I have been haunted by this since I walked out of the hospital. How do you make this decision? Where do you turn? Billy Ray has made clear he has no one. Does a person in this situation become MORE religious or LESS? Rage against an unjust G0d or find comfort in the hope of an afterlife? Charles DeGaulle had a child with Down’s Syndrome. On her death at age 20 he said “now she is just like everyone else.” Is this what Billy Ray is thinking? That in death he will finally be the same as everyone else?

And what does this say about each of us in our lives? What does it say about the problems that we face, the things that might make us rage against some personal injustice? How might we see our various infirmities when cast in the shadow of a man who has lived more than half his life in constant pain, a man alone? The answer, of course, is obvious, eh?

The more subtle message is about people, having people. Having family, friends, people for whom one might choose to live. It’s very easy to understand the heroic efforts others make to survive in spite of the odds, despite the pain. Somewhere deep inside the will to live exists in the drive to live for others. The sadness I felt leaving the hospital and what haunts me is not so much Billy Ray’s decision but my complete and utter understanding of his decision.

Billy Ray gave lie to the heretofore truism that “no man is an island”.

Go out and build your bridges. Build the connections to others that will build your will to live. Live so that you will be alive for your others. Be alive so that your life will be more than something which hinges on nothing more than the switch that can be turned off. Live with and for others so that you, too, can understand not only Billy Ray but also those unnamed people who fight for every minute of a life.

Be more than alive. Live.”

 

Sitting here in the airport with Beth, headed home after celebrating our Anniversary with Lovely Daughter Megan and her Handsomedon Prince, somehow my back doesn’t feel all that bad anymore.

Sunday musings 9/2/18

Sunday musings…

1) Eschaton. A final stage in social evolution. Proposed by futurists in Silicon Valley as the inevitable.

Likely to be as accurate as Marx commenting on the steam turbine and electrification. (HT George Gilder).

2) Refurbish. Mrs. bingo and I own a refurbished 1971 runabout. It took 11 months to be  returned to us. At the moment it is a lovely piece of lawn art because our 1999 pier is in the middle of a refurbishment.

Yup. It’s been 11 months.

3) Air Show. Labor Day Weekend means it’s air show time in Cleveland. It’s nothing short of awe inspiring to see the majesty of our nations’s air power parade by the North Coast of the U.S. Two A-10′s casually floated by Casa Blanco on their way to the fairgrounds. They. Fly. So. Slowly.

Why do people choose to mess with us?

4) Nest. My brother and sister-in-law are now officially empty nesters. Both children have graduated and are full employed. No one lives at home. Randall and Joanne chose to spend their first official trip with us. This is actually a pretty big deal; for 10 years they have spent literally 40 weekends per year following their boys’ collegiate teams. For 10 years I have waited for my bother, my best friend, to be free to hang with me again.

What’s the point? Simple. Sunday musings, indeed, all of my pabulum, is a luxury that I have taken for myself, and that all of you have gifted to me. It’s been a blast. A privilege. But it’s neither necessary nor is it mandatory. Here we are at 2042 and I am just now getting around to my laptop. I spent today doing pretty much exactly what I have exhorted each (both?) of you who read my stuff to do: spent my day in direct face-to-face contact with people I love, away from pretty much all forms of digital whatever. Arms length or closer, all day. We slept in while Mrs. bingo tended to her horses. We got a collective dousing from the Man Cub, who has apparently discovered how to turn on the back yard hose. The sunset over Lake Erie was epic.

I love writing for you, I really do. I hope that what I write occasionally gives you a moment to reflect on what it is we do and why. Today I just lived among my people. My whole day was spent with people I love who love me right back. I was busily in the act of loving and being loved all day long.

What a day!

I’ll see you next week…

–bingo

Sunday musings 8/19/18

Sunday musings…

1) Bollocks. Testicles. Who knew? The whole kerfuffle over the Sex Pistols album title makes a ton more sense now.

2) Directed. “Use as directed.” I’m not sure who is more surprised. Mothers when their offspring open up some something or other and just fly into using it (and it works), or said offspring when they fail to check the directions and whatever it is they opened doesn’t work.

For the record this is also a problem in areas that are a bit less trivial than a tiny drone received as a birthday gift. Like medicine.

3) Knots. “Miles per hour plus the glamour of the open sea.” –Mark Childress.

Not terrifically accurate, but who’s gonna argue with that little bit of poetry?

4) Despair.  Why is it that so-called “great literature” always ends in despair? The boy never gets the girl and vice versa. Every family is rendered asunder whether or not they deserve that particular fate. Why?

Lettie Teague wrote about her summer reading, all of her books centered in some way around wine as a pivotal character. Upon reading the headline I was excited to have some fun, happy reading for a change. Yah. About that. Even the consumption of epic wines was spoiled by the despair that prompted the binge or that which ensued.

Jeez. Winston Churchill managed to help save the world when he drank. How come no one can write literature with a happy ending?

5) Change. Inspired by by near lifelong friend Bob.

I watch the ripples change their size
But never leave the stream
Of warm impermanence
And so the days float through my eyes
But still the days seem the same.  –David Bowie

Grand baby birthdays. Siblings and their offspring passing milestones. 40th high school reunions. There is no escaping the passing of time. Along with the ebbs and flows there has been but one, single constant: change. Each day seems so much like the one just passed, and yet a glance ever so slightly further back brings an awfully quick reality check. Change has been afoot. “You haven’t changed” is such a lovely thing to hear, yet it, too, cannot withstand even a passing glance in the mirror.

There is nothing new or even remotely weighty about noting change. What is significant, though, is the importance of both acknowledging and accepting change, however disruptive it may be physically or emotionally. One must be able to see change and react accordingly, no matter how difficult it may be for either an individual or for those who may be highly interested spectators. I think of my good friends from California, true pioneers in both the CrossFit movement and subsequently independently in the larger fitness world. They have looked at how their world, their lives have changed, and they have accepted the need to change as well. For them it begins with the closing of a beloved, iconic gym which is rightly famous worldwide, the loss of which has been met with an international tsunami of tears. Yet they have seen the change and have accepted that the time had come.

Some changes are so disruptive that they turn lives upside down even when you know they are on the way. Our friends Bob and Kathy begin the journey toward an empty nest as their only child begins his senior year in high school. So, too, my brother and sister-in-law must adapt to the changes brought by college graduation and their sons’ retirement from competitive sports. No longer will Randall and Joanne plan each week around their boys’ games. My sisters and their husbands are soon to follow. Will those changes be any less impactful given foreknowledge?

Someone, I’m not sure if they like me or not, once asked at what age I would choose to be frozen if such a thing was possible. How old would you choose to be, with all of the attributes of that age but no prospect of any further growth or development? It’s an impossible question, a cruel koan which cannot be solved. How can one possibly choose between the youthful feet attached to the running shoes that are so joyfully and maddeningly soaked by your child and the archless soles doused by a grandchild? Which is better, to have the agility to dance away from your son’s aim lest your shoes be ruined, or to happily submit to the realization that the laughter of your grandson is more than worth the fact that you can no longer save the shoes regardless.

Besides, the shoes have changed, too. They’re waterproof now.

Changes are happy and sad, big and small. We lose parents and friends. Special places like our friends’ gym close taking with them any chance they may change us for the better. Heck, it looks like I’ll be changing hips sometime soon, a change I for some reason thought I’d be the only one to escape. It makes me sad to hear parents tell a child “don’t change; stay like this forever” because that is one wish that will never be granted. Nor should it. After all, there is only one way to assure that change will never come.

I am not done changing
Out on the run, changing
I may be old and I may be young
But I am not done changing   –John Mayer

Change is life. To change is to be alive. Embracing change is to live.

I’ll see you next week…

–bingo

Sunday musings 8/12/18

Sunday musings…

1) Krispies. All of my snaps and crackles now have pops.

2) Relevant. “Who wants to be relevant? It just takes a lot of work.” –Andie MacDowell

In this day of social media driving said relevance I think Ms. MacDowell is spot on. When relevance is measured by something as ephemeral and lacking in any type of substance as retweets and follows, her take is prescient.

True relevance is substantive. Or should be.

3)  Games. What are we to make of the massive gap between the top 5 men and women and everyone else? What is it that separates them so completely from the rest of the very best? Is it just me or is this fundamentally different from all of the other truly individual athletic sports?

4) Summer. For anyone with school-aged kids summer if officially over. August 1st has come and gone, the CrossFit Games are over, and football camps are open all across America. Heck, school starts in parts of Ohio on Wednesday, and didn’t I see kids heading to school last week on FB?

Sorry, that’s all wrong. School is meant to start after Labor Day. Too much work too soon for kids who aren’t taking part in feeding a family.

5) Screening. It appears that I am a health tracker recidivist. Why? Well, it certainly has nothing to do with the truly actionable nature off the information a tracker gives me, because to date only heart rate variability (HRV) has any value and at that it appears only in elite athletes. No, I’m just having some fun with mine, playing around to see if my little n=1 studies might come up with something that might move my needle for some reason or other.

That, and they are fun to write about.

Screening for health risks is potentially a big deal, the across the board lack of success thus far notwithstanding. The most recent best example of that coin is an article published this month in the NEJM on cardiac testing of elite soccer players in England. Performed at age 16 between 1996 and 2006 the screenings were undertaken to see if an EKG and Echocardiogram could predict cardiac events that led to early death in athletes who compete in sports with “strenuous exertion”. In all more than 11,000 athletes were tested, the vast majority of whom were declared healthy.

1 in 266 were found to have an underlying, silent abnormality that put them at risk for sudden cardiac arrest. Most of these were Hypertrophic Obstructive Cardiomyopathy (HOCM), the same entity that was responsible for the tragic death of Boston Celtic Reggie Lewis. 2/3 of those who were found to be at risk had surgical procedures which allowed them to safely return to play; it appears that they are all alive and well. Of the originally screens players 8 did in fact die from cardiac arrest, but here’s the kicker: only 2 of those 8 were assesses as being at risk. The other 6 went through the screening and passed. Overall the results equal a risk of 6.8 deaths per 100,000 athletes.

What does this mean in the greater context of health screening? In general the problem with health screening of all kinds (remember, I am in the midst of a classic American cardiac health risk screening process at the moment) is the combination of inaccuracy as noted above, coupled with a fraught cost/benefit ratio in almost all instances. Believe it or not, though, the cost of screening relative to the accuracy and ultimate effect may be the lesser of the problems inherent in screening. Two of the athletes screened and found to be at risk refused to give up soccer and were among the cardiac deaths. You might ask if they were mad to have continued to play, but I would counter that it is quite likely that all they had as a means to provide was soccer; to not play was to choose to go hungry. Imagine an inner city kid destined to be a Lottery Pick in the NBA screened and told they could no longer play the game that would surely set them up financially for life on their rookie contract alone?

Not to mention the deep psychological issues inherent in being told that you are no longer the one, single thing that you have self-identified since early childhood. That’s rough.

One of the very first diseases one used to learn about in med school was Huntington’s Chorea, an inherited disease in which the afflicted exhibit violent, uncontrollable movements (chorea) before eventually dying a rather unpleasant death  (any med students here? Is that still true?) Why? Well, partly because it’s such an interesting tale, equal parts detective story (the original cluster is in a tiny town in England) and history lesson (many of the townsfolk in England emigrated to Salem and were on the wrong end of the Salem witch trials). What makes this interesting in the context of screening is that Huntington’s Chorea is the first disease for which a single gene defect was identified, making it possible to screen with 100% accuracy to determine if you, like Woodie Guthrie and his siblings, would be so afflicted.

Would you want to know? Remember, even in this age of SPLCR technology there is still no cure for Huntington’s. Is there a difference between this and the cardiac risk of HOCM in athletes? How about the rather mundane and ridiculously common risk associate with elevated serum lipids? Given that there are things one can do to mitigate the risks in the latter one should probably answer “yes”, there is a difference. But emotionally, on an individual level, is there? That’s a really hard question to answer. I personally know families with Huntington’s and HOCM. Some family members get tested as a matter of course. Others, for any number of reasons, choose not to do so. In your life you know dozens of people who really need to be screened for diabetes and cardiac risk from elevated serum lipids who prefer the relative comfort of ignorance.

Who is to say who’s right?

In the end this is a question that is going to become more and more common as testing becomes both easier and less expensive. We are soon to see a lab test for HOCM which will be less expensive than an EKG/echocardiogram and more accurate to boot. The calculation will change as well because on the heels of this test is the likely approval of a gene therapy that will reverse the abnormality and presumably remove the risk. For some reason Huntington’s Chorea has defied this happy ending, but it has to be just a matter of time before it, too, is curable. Before any universal agreement is reached on screenings in general you can depend on tons of controversy which each new development. I shudder to think of the coming shit show that will be wrist-worn trackers that can detect afib in real time.

Who knows what kind of mischief I will manage to get into with my little HRV monitor?

I predict I’ll see you next week…

 

–bingo

 

Sunday musings 8/5/18

Sunday musings…

1) Babies 2. Not gonna lie, still on a huge high from babies on the beach for the first time in 15 years. To top it off our last ‘baby” Ryan visited for a couple of days as he prepares for his senior year in high school.

All 6’5″ of him!

2) Highway. At the moment we are steaming along I-90 headed west to Casa Blanco, Beth at the helm. It never gets old, that feeling of awe that I can be connected to you all while I speed through the countryside of Western NY. I think this cellphone/internet thing is gonna make it, ya know?

This trip is often filled with hours of debriefing the events of extended White family’s week together crammed in our rented house on Cape Cod. Not this year, though. Nothing but a quiet, warm feeling as we work through the math necessary to accommodate what is likely to be a bigger crew next year as word gets out about how much fun we had.

3) Games.  This is the first year that CrossFit, Inc. has included sessions and events targeted specifically toward physicians who do CrossFit. It’s a good idea, albeit one that is rather late to the gate given Coach Glassman’s interest in the intersection of fitness and health. Still, better late than never. One of the best parts of the enterprise is the involvement of Dr. Julie Foucher. Waiting until now means that she is available to participate in the growth of the CrossFit MD movement as she, herself, grows as a physician.

Occasionally I stumble upon a post in the CF MD page on FB. Without meaning to offend, CF is so new to the majority of the MD’s participating that the space looks less like a collection of docs and more like some of the threads we all used to participate in back in the days of CrossFit.com v1.o and 2.0. This is not surprising, nor is it a knock on my medical colleagues. CF is exhilarating in the early stages; the newness of CF is the same for every new adherent. I feel like I am re-reading some of the best threads on the CrossFit Forum ca. 2010 or so.

Which makes me wonder: wouldn’t it be possible to accelerate the indoc (see what I did there?) if either the MDL1 course or the prep work included a review of some of those classic Forum threads? Think Eugene Allen on programming or Larry Lindenman on planned/cycled recovery. Robb Wolfe on Zone/Paleo nutrition. I remember one on scaling the load in a WOD based on your CrossFit Total (back for the first time since the very first Games in Aromas) rather than sex, height, or weight. Pretty sophisticated analyses from some of the OGs we no longer see anywhere around CF, but relevant and on point today as much as they were back in the day. You could accelerate the impact of having doctors engaged in functional fitness by leapfrogging them through the stages of self-discovery.

My take: make healthcare more like fitness rather than making fitness more like healthcare.

4) Reunion. Our return to Ohio is a day or two later than usual because we attended the 40th Reunion of one of my high schools (I moved after freshman year). Not a typo. 40 years. Doesn’t seem like yesterday; more like last week! One funny quirk: we all referred to each other as “kids”, as in “who’s that kid over there in the green shirt?” Every one of us did it. Attending was easy since it was my turn to bring my Mom home from the Cape and she still lives in the house I grew up in.

So? How was it? Was the Reunion a meaningful milepost? An event that will in some way alter the trajectory of any of us who attended? Probably not, but then again, is any Reunion really supposed to do that? No, what happened was a group of really nice people, many of whom still live in or around town, got together and spent a few hours being genuinely nice to one another. Oh sure, Tim (our Valedictorian) made fun of my senior picture outfit (definitely deserved), and some of the goofy stuff we wrote in each other’s yearbooks got a re-reading, but all in all everyone was quite gentle with one another. Heck, we could have spent all night ragging on me after Jane pulled out a pic I signed, but she was too kind to let it go down that way (for which I will be forever grateful!).

Heck, I’ll bet Dianne only got positive responses when she got folks to play the “who has changed the most” game (I wimped out and didn’t play).

No, Reunions are for remembering as many smiles as possible from days gone by, and for enjoying whatever threads there may be that tie us together, still. There were some crazy “it’s a small world” connections that were just a hoot to discover (like the Needham connection, right Lori?!) It was fun, and flattering as hell, to discover that some of my classmates have discovered my ramblings here and elsewhere and liked them. For the record they all seem to agree that Beth is AT LEAST my Better 95%! Tim and Tom came from California to RI and got trumped by Yukio who surprised us from Tokyo. That’s just cool. No revelations, no epiphanies, just a few hours to remember that we were privileged to have known each other in whatever small way, then and now.

I had so much more fun than I expected to, from the first hugs (thanks Kit, Jackie, and Sue) to the last handshake (great party Steve), I’m so very happy to have been a part. Think “yes” the next time you get an invitation.

I’ll see you next week…

–bingo

Babies on the Beach

Babies on the beach.

It’s been 15 years since the extended  White Family last had babies on the beach. Really, is there anything more wonderful than being witness to a toddler’s first dunk in the ocean? Up he comes, blinking and sputtering, the brine streaming out of his mouth and his nose and his ears. “Grammy! It tastes like salt!” As if it is a discovery as earth shaking and consequential as Magellan or Columbus.

We are back on Cape Cod for the 27th consecutive year. The White Family has assembled once again for a week of sunshine and sand. Gram is still with us, and that means 4 generations gathered to celebrate family. It’s equal parts Groundhog Day (everyone knows exactly where to sit for dinner) and the 8th day of the Universe (Grandchildren! In-laws!). Our neighbors, summer locals, expressed their amazement once again. “You’re back!” Like so many Monarch butterflies we have arrived right on schedule.

What does it take to pull something like this off. I gave this quite a lot of thought the first year we were here after Gramp left us when I wasn’t quite sure I’d ever see this particular beach again. We have been blessed with mostly good fortune, and our family has a couple of generations of beach history before ours. We are a family that thrives on consistency; do something twice and it’s a tradition. It’s almost as if we were wired to make this happen. Add to that a strong matriarch and patriarch, siblings who had more in common than not, and not inconsequentially 4 spouses who were willing to play. Don’t forget to pinch of good luck (only one rainy day per each week) and tons of hard work (hey, it’s family!) and you have the recipe for success.

Like our oft-offered advice for marital success (never stop dating!), Beth and I wish for any of you who might have a few of the ingredients above the courage to try something like this with YOUR family. A day, a weekend, a week…whatever might work for you. My kids know their cousins even though they’ve never lived in the same state. They know their aunts and uncles. They revere their grandparents. 27 years might be a bit much to expect, but you never know!

Man, babies on the beach again. How good is that?!

 

 

 

Having Passion

“They may say I can’t sing, but they can never say I didn’t sing.” –Florence Foster Jenkins.

Mrs. Jenkins was a socialite in NYC, I believe, who was quite passionate about singing opera. She had the financial wherewithal to produce her own performances in a rather major way. There’s a movie about her starring, I think, by Meryl Streep. A pivotal scene in the movie takes place at Carnegie Hall. There was only one problem with that, at least as far as it went for the spectators: Mrs. Jenkins was a terrible opera singer. Actually, she was epically, brutally bad at singing opera. Yet again and again she went to the well and sang her heart (and her lungs) out in front of an audience.

My instant, deep emotional response to this story is jealousy. Jealousy followed by mad respect. Jealousy because Mrs. Jenkins has a passion, something about which she cares so deeply that she is willing to pursue it to whatever limit her abilities might impose. Respect because she is willing to devote time and resources to this pursuit in spite of the fact that she will never come anywhere near anything that even approaches proficiency, let alone excellence. More than that, she insists on sharing the fruit of her labor publicly, even though she is told time and time again that her particular fruit is inedible.

No matter. Florence Foster Jenkins will sing.

Everyone should have a passion like this. We should add a tiny disclaimer or two, of course. There are a few things that shouldn’t be done by amateurs or hobbyists, no matter how passionate they may be about them. Neurosurgery quickly comes to mind. Or operating heavy equipment, even if you didn’t take any of those medicines that are advertized on TV where you have to choose between your health or, you know, driving a backhoe. If your passion is harmful to you or those around you it’s probably more psychopathic than passionate. Short of that, though, the kind of passion shown by Mrs. Jenkins is to be envied, something to aspire to.

For many years now my own life has been missing this. Outside of my marriage and my family there isn’t really anything I burn for like Mrs. Jenkins burns to sing. I do get to watch this magical phenomenon on a daily basis though. My wife Beth had long yearned to ride horses. When our kids had gone off to college she finally had her chance. The barn is her happy place. A funny thing happened for her that makes our collective experience very different from Mr. and Mrs. Jenkins. Somewhere along the way to “time-filling hobby of 50-ish homemaker”, Beth actually started to get good. I mean good enough that even a knuckle-dragging ex-fooball player spouse could see the difference. Good enough that she outgrew the ability of her horse. Doing the work has never felt like work for her—that might define passion, eh?–and there has been a payoff: she is still getting better at riding.

As for me, I will go on in search of that thing that makes me want to put everything aside and just do. That thing—singing for Foster Jenkins, riding for Beth—you think about when you are doing almost everything else. Might be writing; we’ll see. For those like me I wish you good fortune in your search, and remind you that the search is worth the effort. If you are one of the lucky ones who’ve already found yours I extend to you the same jealousy and mad respect I have for Mrs. Jenkins and my wife.

Never, ever, ever let anyone tell you that you cannot sing.

Time Affluent

Time is the most valuable commodity. For each individual it is a finite item. Precisely 24 hours in each day, thank you very much, at least a couple of which you must spend sleeping. It has been called the ultimate luxury, spawning a new class of individuals for people to be jealous of: the time affluent.

It seems that there are two diametrically opposed camps when it comes to time. There are those who feel that the proper approach to the finite nature of time is efficiency; one must develop the ability to utilize each waking moment to its fullest, most productive limits. This group includes both multi-tasckers who try to do lots of things simultaneously, and power workers who have preternatural powers of concentration and just motor through one task after another. For the record, bosses love this kind of producer, right up until they crash that is.

On the other side of the coin is a group that cherishes the freedom that unassigned time provides. Time, that is, in which one can choose to be “productive” in a way that can be measured (e.g. practice bending notes on a harmonica) or not (play along to Wammer Jammer). Knowing the difference between the two is the first step toward this type of freedom. I have professional friends who simply can’t get enough of our particular medical specialty. They work all week, every week, and in their “free time” they attend conferences at which our specialties nuances and science are discussed and debated. Some of them are very serious about all of it. They have each day mapped out to the minute and race from one session to another. They are productive. Others approach it differently; they are exploring.

Each of us has that same 24 hours each day, and we all have some version of the same things that must be accomplished over the course of those hours. The aforementioned sleep, eat, earn a living…almost all of us have this going on. One can choose to “invest” in time, though. If someone else mows your lawn that frees you up to go to the gym, for example. Cooking, cleaning, shopping, stuff like that can be offloaded or batched so that extra aliquots of time are available for other stuff. This is what it means to be “time affluent”. There are choices that can be made, sacrifices in one area that gives you more time in another.

As is my wont I will offer an example from life Chez bingo. Many of my close professional friends spent last weekend in the mountains of Utah at a conference. All of the stuff that I like to do and all of the colleagues I like to hang out with were there. Me? Stayed home. The lake was flat and the Man Cub was available to hang out. Going to the conference would undoubtedly have brought me consulting and writing gigs, but I have more of those than I have minutes to spend with a water-loving 2yo. A really interesting business opportunity is circling my day job, looking for a place to land in my schedule. Frankly, it’s great business. But it will take time. Time that I have gotten accustomed to using in other ways.

While I have more freedom than most I am not “time affluent” enough to walk away from that joint venture; Monday morning will find me in meetings about how to make it fly. It’s actually interesting and intellectually engaging enough that I might have done the same thing even if I didn’t have such a compelling business prerogative involved. Still, the thought did cross my mind that maybe, in the end, I was actually better off letting it pass me by in favor of owning those minutes that will now be jointly owned by our venture.

Like money, no matter who much you have, someone always has more free time than you do.