Wednesday, September 8, 2021

I am reborn after a medical miracle!

I didn't come into 2021 even daring to hope for a miracle. I was pinning my hopes on a simple reversion to the mean; anything, it seemed, would be better than the year my family and I had in 2020.  But a miracle is what I got, and after spending much of last year complaining, I now want to share my good news with everyone in my life. 

I was doing my best to prepare myself for likely open heart surgery this winter. But thanks to an experimental drug in a clinical trial, I have, stunningly and suddenly, found myself not only relieved of my symptoms, but possibly, at 63, in the best shape of my life.  

I didn't learn that I had a congenital heart malformation (hypertrophic cardiomyopathy, or HCM) until I was in my 40's, and I wasn't aware of its lifelong effect on me until just this year.  I was a terrible athlete as a child, always the last kid chosen, and never sure whether to blame my deficiencies on nature, will, or character.  But I was fortunate in many other ways.  My hyper-intellectual family put almost no value on physical achievements, so I never had a disappointed parent pushing me beyond my capability.  (As it turns out, that could actually have killed me, as HCM is the leading cause of sudden cardiac death in young athletes!)  Moreover, in non-athletic venues I was a superstar, a child prodigy, and I grew up certain that I preferred my lot to my opposite number, the proverbial dumb jock.

Still, I was hard on myself, always feeling that if I just tried hard enough, I ought to be able to at least, say, jog a half mile.  I ignored the fact I was otherwise quite persistent, and never saw my mix of physical abilities and limitations as any kind of clue.  For example, although I could never jog more than a few hundred yards, I was always an epic walker -- hiking on the Appalachian Trail as a teenager, and walking several miles daily most of my life, generally briskly enough that people with longer legs asked me to slow down.  I was also a dancer, even occasionally teaching and performing, but generally needing to rest between the most vigorous dances.  No one ever thought to view this as a medical mystery.

I did know that the men in my father's family nearly all suffered sudden cardiac death in their 40's, 50's, or 60's, and I never expected a long life.  My father's terror of that legacy led -- after enough false alarms to raise the issue of hypochondria -- to his diagnosis with what is now known as HCM.  Because the condition is congenital, I got tested in my 40's and learned that I, too, was born with this abnormal thickening of the heart wall.  Although I had a heart murmur, I didn't appear to have any other symptoms, and the doctors basically just told me to get checked regularly.  

After I turned 60, however, the symptoms began.  Previously I ran out of breath quickly if I tried to run, but I could walk more or less indefinitely.   Now my breath began to run out walking up hills or stairs.  I pushed myself blindly until the hot August day 2 years ago when I landed in a Manhattan emergency room.  After incorrectly being diagnosed with a heart attack, I learned that my symptoms were due to HCM, and was directed to a specialist.

At the HCM clinic in Ann Arbor, I learned that I was likely to need a septal myectomy.  I had always hoped that, if the day came when a doctor delivered bad news, I would be calm and philosophical.  So I listened quietly as my doctor explained the plan to crack open my chest, stop my heart, thread a knife through my aorta into my heart, and shave down the muscle of the heart wall.  After they picked me up off the floor and revived me, I also learned that, horrible as that sounds, the surgical mortality is less than 1%, with a major complications rate under 5%.

Those are good odds, but I was a math major, and if I heard of a lottery where my odds of winning approached 1%, I might actually buy a ticket.  Moreover, there was no rush.  HCM patients have "nearly normal" life expectancy if treated properly, but often with increasingly restricted abilities.  I could defer the myectomy almost indefinitely, but my symptoms would only grow worse, as would my ability to recover from surgery as I aged.  The timing of the surgery was largely up to me, and I began to plan to have it during the approaching winter.

So I started putting my affairs in order, and even increased my walking in hope of losing weight before the surgery.  Then larger matters put my little problems in perspective:  over the next year, while a pandemic ravaged the globe, multiple illnesses and deaths hit my family.  While I had relatively minor heart surgery to implant a cardiac defibrillator in my chest (a requirement for that "near normal" life expectancy),  I deferred the big surgery for a year as my HCM symptoms slowly worsened.  By June of 2021, I could only climb 15-20 steps before I needed to stop and catch my breath.  And then, after the hardest year of my life, came the miracle.

As luck would have it, my cardiologist was the lead investigator in a clinical trial of the first drug ever specifically designed for HCM.  Within my first month on the drug, I returned to Iargo Springs, a beautiful local spot I had doubted I would ever visit again because it required climbing 300 steps.  When I reached the top after stopping just once -- and only because the people I was with wanted to stop! -- I was so excited I actually jogged around the parking lot in my exuberance!  

As of this writing, my symptoms are almost completely gone -- my cardiologist no longer even hears a heart murmur! -- and I won't need the surgery unless they return.  I feel healthier and more athletic than I did even as a child, and I'm in a nearly constant state of joy and gratitude.  For the first time in years, I can imagine my best days may yet be ahead of me.  I am excited to see what comes next!

Friday, May 14, 2021

The Year of the Geese

 It is the year of the goose at Guppy Lake.  Well, geese, really -- the most ever on our little pond.  

We've often had nesting geese here, but never more than one pair at a time.  This year we have three pairs.  It's been pretty noisy, but gradually the three allegedly-monogamous couples are settling down to being simply picturesque -- though that changes, of course, if there's the slightest hint of new arrivals, as in this video I managed to capture:

In my mind, however, I also hear the ominous soundtrack of a Hitchcock movie.

Every year or so, in the spring, a pair decides to try to raise a family here.   It's a big mistake; tragedy inevitably ensues.

The problem is that the body of water we call Guppy Lake is actually quite small and shallow, and not really much of a barrier to predators.    But even in high water years, there are several islands in Guppy Lake that apparently look safe to geese, so they lay their eggs on them.  

There are few predators around here that would tangle with an adult goose, so they're mainly looking for turf on which they can defend their eggs against a direct assault.  They guard the eggs well, and soon we're treated to a line of adorable little goslings, following their parents around the lake like soldiers.

Alas, it is the goslings, not the eggs, that are vulnerable.  The lake's size permits weasels/stoats/ermines/fishers to attack from below, snagging a gosling before the parents have a moment's warning.   A great honking lament ensues from the parents, which can last for days, reinforced as the remaining goslings are picked off, one by one.  I don't think I've ever seen one survive.  And the geese really do mourn.

So this year three pairs of geese are visiting the Guppy Lake Gosling Abattoir.  Usually, peace and quiet are among the first words you'd use to describe Guppy Lake, but we can safely expect a record cacophony of mournful honking in the weeks to come.   But timing is everything.  Trina and I are about to spend a month in New York, for the birth of our newest granddaughter.  If we're lucky, the folks watching our house will bear the brunt of it, while we're enjoying Manhattan's relative quiet and serenity.

Monday, May 10, 2021

Modern Medicine: Our Selfishness is Our Doom

I am deeply appreciative of the miracles of modern medicine.  I cannot help but feel grateful, in particular, for being able to participate in a clinical trial of a new drug that might help me avoid open heart surgery.  Few living creatures can escape a certain level of selfishness when it comes to the desire to stay alive.

But as we all should know by now, our miraculous technologies come at a cost.  In her fascinating book "Lightning Flowers," Katherine Standefer investigates the ecological and human cost of the computer that lives inside her chest -- and mine -- in the astonishing expectation that it will bring us back from the dead if necessary.  That cost is measured, among other ways, in Third World mines that destroy forests, rivers, and communities of human beings.  

How much collateral damage is acceptable as the cost of saving a geriatric life?  I fear that modern medicine has largerly failed to properly consider the broader cost of many of its interventions.  

Case in point:  Every month, my clinical trial requires me to go to the hospital in Ann Arbor for some tests and to be given my new month's dosage of the experimental drug or placebo.  It's important that they take back any pills I have left, and give me all new pills, because the ghost in the machine at the heart of the study may have changed my dosage for the month.

Unfortunately, one month I couldn't hang around long enough for the new pills.  I could have come back, but they offerred to send the pills by courier.  It seemed a little decadent, but they offered, so I said yes, and the pills were promptly delivered.  What was delivered was 30 ordinary sized pill capsules.  They did not need refrigeration, and were not toxic to touch like chemotherapy drugs.  Perfectly ordinary capsules, probably containing nothing but sugar.  For some reason, they put them in two bottles, either of which would be big enough for all of them:

They put each of these little pill bottles inside a larger pill bottle:

Despite the fact that the medicine is not toxic to touch and does not require refrigeration, they included a mask and gloves, and an electronic temperature monitor that documented the temperature in transport:

They put all this inside an 8" x 8" cardboard box, "protected" by 12 Koolit gel packs:

They then put that box inside another cardboard box, this one 9" x 9" with lots of styrofoam glued onto it, rendering it unrecyclable.  They then put that box inside a 17" styrofoam cooler, specially shaped to fit around the styrofoam glued onto the 9x9 box and immobilize it.  Before closing the top on the styrofoam box, they threw in four more Koolit gel packs, each of them 3 times as large as the previous 12.  The styrofoam box was then placed inside a final cardboard box, 17.5"x17.5", and proudly labelled "KoolTempGTS  Excel Qualified Shipping System"

I'm 63 years old.  It would certainly be nice to have a couple more decades, but modern technology has already made that pretty likely -- the heart surgery that would fix my problem is astonishingly invasive, but the mortality is less than 1%, and the serious complication rate under 4%.  This new medication is being developed not so much to save my life as to do so more *conveniently*.

I'm not fishing for compliments when I say that I don't think destroying habitats, rivers, watersheds, and the entire cultures of some ancient communities we dismiss as "primitive" can possibly be justified by it making my path to a longer life more convenient.

Fortunately, I really don't believe it's an all or nothing game.  The whole point is how unnecessary this waste is.  For 30 pills, they sent me four plastic bottles, an electronic temperature monintor (disposable, apparently), twelve POUNDS of gel pack at God knows what environmental cost, three cardboard boxes, one of them bristling with non-recyclable styrofoam, and a styrofoam cooler big enough for two dozen beverage cans.  

They could have delivered me these pills in the smallest size of plastic bag the supermarket sells.  I'm deeply grateful that so many people are doing research and studies that could extend and enhance my life.  But couldn't they think about the planet at the same time?  Shouldn't the professional vows that doctors take, which are focused on the welfare of the patient, take into consideration the longer-term well-being of the patients and their descendants?

Monday, April 19, 2021

I Get By With a Little Help From My Coworkers

No one has  ever described me as the strong, silent type.  For a baby boomer male, I’m rather quick to share my feelings.  But it would probably surprise some people to know that, having been raised amidst cultural expectations of male stoicism, I still suppress quite a bit.  When things were tough, I have more often than not simply said, “Fine thanks, how are you?” – especially at work, in the name of professionalism.

But then came 2020.

There was the pandemic, of course, and the consequent economic and racial inequities, and the terrible incivility of a toxic election.  And while my wife Trina and I own an Airbnb that was hard hit, all of that was just a sideshow for us.

To summarize quickly: In February we went to Chicago to help care for our granddaughters (8-11) while our daughter Lea had esophageal surgery.  During her recovery, her husband Mike had a recurrence of his brain cancer, so we stayed for another surgery.  Then COVID hit and we became a "pod" with our daughter Miriam and her family, all camping out at Lea's house for nearly ten months.  Then our daughter Shana died suddenly.  Then we spent the rest of the year caring for the girls and nursing Mike through two surgeries until his ultimate slow demise January 10.  Along the way I had heart surgery.  Lea had several minor surgeries.  Miriam miscarried. Several other close relatives battled life-threatening illnesses.  And through all this, Trina was delaying much-needed back surgery to care for others despite tremendous pain.  She finally had successful surgery in March, which we hope will prove to be the final echo of a horrendous year. 

I decided, fairly early on, that “Fine, thanks” was not going to cut it for me in 2020.  When anyone asked, I tried to answer succinctly but factually, to the predictable horror of a friendly coworker, or even stranger.  I was surprised to  find that speaking about these horrors, even to people I barely knew, was helpful, simply because I no longer had to work to hold it all inside.  I was most hesitant about unburdening myself at work, but that’s where I got the biggest surprise.

I’m fortunate to work for a company, Mimecast, whose CEO has established from the top a culture of caring for one another.  With this encouragement, my colleagues faced no inhibitions to their natural empathy.  They didn’t just put up with the difficulties my personal life was causing, but went out of the way to offer help and comfort.

When I missed all or part of a meeting because I was needed to help Mike, or to help with the grandchildren’s virtual schooling – I was de facto tech support for the household – my co-workers didn’t just put up with me.  They urged me not to worry about it, briefed me on what I missed or met with me separately, or even offered to cover some of my work.  

As the year went on, it felt like nearly every meeting of my work group began with questions about how I and my family were doing, and whether there was anything anyone in the company could do to help.  And on the few occasions there were, it was forthcoming in an instant. My memory of the first dark weeks after my daughter died is a blur, and I honestly have no idea how many of my work duties I might have missed, because no one troubled me with it.  My manager stepped in and covered for some of my most urgent tasks, and throughout the year my colleagues picked up the pieces I was struggling with, small and large.

None of the many kindnesses, of course, could make a real dent in the overwhelming sorrow that was my life in 2020.  But the help and, yes, the love of my coworkers minimized my sense of guilt at work, made me more effective with the time I had, and reminded me of the world of goodness and joy that seemed temporarily out of reach.

I know that Mimecast is special in this regard.  I don’t know of any other companies whose CEO responded to the pandemic by starting a weekly podcast he called his “Shower of Love,” in which he dealt with the concerns of the company and the needs of the employees as equally important parts of our mission.  But I suspect that even in the most toxic of workplaces, employees sincerely care about each other, if not the corporate mission.

During the pandemic, many of us worked from home and experienced profound isolation from our colleagues and the world.  When we said we missed going to work, it was usually our coworkers we were missing, not the coffee machine.  The idea that at work we are cogs in a corporate machine began to break down, to reveal the underlying truth that we, as human beings, are shaped by our relationships with others.  Our satisfaction at work has far less to do with the code or spreadsheets we produce than with the way the person at the front desk smiles when we walk in the door, or the moment the person in the next cubicle invites us to share a coffee break.

None of this was a great secret, but I had nonetheless underestimated the importance of my work relationships.  In 2020 I came to realize that many of the people I might have described as “cordial coworkers” were in fact real friends who played by an unwritten code of emotional restraint.   There’s nothing that will bring this home quite like having a room (in this case virtual) full of people delay the “real purpose” of a meeting to find out how you’re doing this week.

Not all companies are so supportive, but they should be.  Far from paying a price for encouraging us to care for one another, Mimecast has prospered through the pandemic and the transition to working from home.  And if the people I know are any indication, our dedication to seeing the company succeed has only deepened with the outpouring of caring that went, not just to me, but to everyone in the company, in a time where one could safely assume that nearly everyone was struggling.

Many years ago, I lived at a great distance from the headquarters of a company I co-founded, and flew in every month or so.  As a founder I was permitted to meddle in just about anything.   So when I heard, one visit, that a new director-level hire wasn’t working out, and was viewed as a cold fish, unwilling to make friends with anyone, I decided to pay her a visit.  As I talked with her, I gently pried out of her the fact that, in between her hiring and her first day of work, her fiance had been killed in a motorcycle accident.  Her desire to act professonal led her to mask the raw new wounds of her grief, which was what made her seem cold.  I persuaded her that this had been a mistake, and that it would be better for all if she didn’t have to hide her tragedy.  She changed her approach, and quickly became a valued, respected, and cared-for member of the team.

For too long, too many of us have divided our lives between work and “real life” – as if we check our humanity at the office door.  That has been a recipe for preoccupied workers struggling to hide their personal troubles, with an inevitable productivity cost.  I’ve come to believe that a company is more likely to prosper, particularly against strong headwinds, if the workers feel that they and the company all have each other’s backs, and care about each other as human beings.

Toxic masculinity, in particular, has played too large a role in shaping what we think of as professional work attitudes for both men and women.  There’s no reason we should all try to be “tough guys” at work.  The ideal should be a team of people who support each other while they strive towards a common goal.  Everyone needs to think about how much of a company's success is caused by the desire of their workers to continue as a team that cares for one another.

John Lennon wrote that he got by "with a little help from my friends.”  But surely those friends included his co-workers Paul, George, and Ringo.  Work demands professionalism, but professionalism doesn't require that we suppress our humanity.  Given how many hours we spend working, we need to start acknowledging that our "work friends" are among the most important ones we have.

Monday, December 14, 2020

Section 230 Lessons from Pornhub's Retreat

Under pressure from Visa and MasterCard, pornhub, the world's largest porn empire, has abruptly taken the majority of its videos offline, under pressure because its unvetted user-supplied videos included depictions of terrible crimes.

It's long overdue for porn sites to take responsibility for user-uploaded atrocities.  But pressuring Pornhub on this issue is only feasible due to the near-universal condemnation of the content, the relatively clear-cut criteria for banning content, and the reality that Visa and MasterCard are the global porn police. 

Most other content disputes, however, can’t so easily reach consensus on questions of clarity, morality, and practicality.  That’s why we have section 230.  Without section 230, almost any content provider (particularly social media) would be vulnerable to legal challenges not just over explicit and clearly illegal depictions of rape and child pornography, but over nearly any kind of content dispute, initiated by nearly anyone, in nearly any venue, and nearly always without recourse to an all-powerful enforcement authority.

Content providers would inevitably become more lawsuit-averse.  One might imagine that the legal burdens of a 230-free world might tend to drive out extremes and nudge our discourse back to a happier centrism. But unfortunately, in the legal arena it's likely that the "center" would be defined largely by wealth and power, among other things.  The most marginalized voices would have the least room even to express their views in public.

What kinds of content might dwindle in a world without section 230?

Wednesday, December 9, 2020

My Br@ther's Dementia and Bad UX Design

In the middle of the day, the networked Brother printer stopped working.  Although I was hundreds of miles from my Ph.D. hood, I remembered the sacred incantation:  reboot everything.  Nowadays this is almost a cure-all, but not so this time.  I rebooted the printer, network, and client.  No Joy.

I checked the printer’s configuration.  In a sudden fit of dementia, it had completely forgotten the wireless network.  So I configured it anew, and… it told me I had the wrong wifi access code.

Now, this is a password that is easy to mistype, so I tried again.   Then I questioned my memory and tried a variant a few times.   Then I went to my son-in-law and confirmed my original memory of the password.  With renewed certainty, I tried again.  Several times.  Nope.  Adding insult to injury, my helpful Brother printed an error page every time the authentication failed, so every password attempt killed a bit of a tree.

And that’s when I happened to notice something squirrelly about the Brother keyboard.  Throwing caution to the wind, I will reveal that the access code I was typing contained an “@“ sign.  

The Brother printer helpfully provides an @ on the primary keyboard — prioritizing it over even the comma, as if one types email addresses into the printer all that often — and that’s what I had been using -- lower right, above the friendly "OK": 

But then, by chance, I noticed something odd:  the tertiary keyboard is all symbols, and it ALSO has an @ -- at far right, center:

I tried one more time, now using the @ from the third screen rather than the first.  Worked perfectly.  

It's an old printer, but you'd have to be older than me for this to be an acceptable design flaw.  A novel entry in the User Interface Hall of Shame.

Wednesday, July 12, 2017

Eight Years Without Net Neutrality

My whimsical contribution to the day of action for net neutrality can be found at: