HOW OUR BLOG BEGAN, in AUGUST 2010: As many of you know, Phil has been struggling with a very complex series of neurological issues for about 5 years. This past spring, the issues became especially intense as a result of an unexpected cognitive decline and a fall on May 15th that resulted in a head injury and further decline. And then, on July 16th things catapulted to unbelievable, as Phil suffered from a severe "electrical storm" in his brain that essentially created a status of brain death for two full days. Inexplicably, the very morning that neurologists and other medical team members were planning removal of life support, Phil began breathing on his own and his brain waves returned to a stable, while still abnormal, level. Since then, each day has been a unique journey. And while he and his body continue to demonstrate a will and capacity to live, he continues to have severe deficits and it is quite uncertain as to the path he will take. As loved ones close in can attest to, it has been tricky to keep up emotionally with all of his changes, and provide the needed support. We can only imagine the hard work Phil has gone through as his brain has taken him through such roller coaster experiences. It is our goal here to keep family and close friends apprised of Phil's ongoing story, and to build connections that honor him.

AND THEN, SEPTEMBER 11, 2010....Dad's remarkable journey alongside us culminated in a gentle, generous death.

And so, my goal here now as his daughter is simply this: to record snippets...pieces of his life that my memory offers back to me, pieces of myself as I learn to live without a dad. I hope all who meander by find life, and hope, and peace.

Thursday, March 7, 2013

today I meet the smartest man in the world


It was an unbelievable day, sitting down with a world renowned neuropathologist to discuss the results of your autopsy.

which were, in the end


Your brain.  The part of you that held your soul and released it to us one word, one action at a time.  Distilled to its smallest possible form.  Studied at 40,000 levels of magnification.  And even then, the cause of your crushing life closure is ultimately unknown.  

September 12, 2010.  The scientist sits at his desk.  Another day, another slide.  Slips it into his microscope.   As your cells come into focus, things begin to get interesting.  An infection, yes.  How cool!  Incredibly rare.  But the specific pattern your cells display?  He's never seen it before.  And yet, there it is, present in multiple eloquent places in your brain.  Even though they take up a tiny fraction of the total mass of your brain, their look is so distinctive, he knows as soon as he sees them he's stumbled onto something that demands an explanation.  Since there's no one to call and consult with (pathologists don't specialize in infections because they'd have nothing to do), he turns to his computer to tackle the literature reviews.  What he finds is sitting next to impossible.  And just like that, you become a file he'll never forget.

Well, Dad, perhaps eventually I'll spell out every last detail in the event they don't keep medical records where you are.  But tonight I'll keep it brief.  He only found ONE OTHER CASE that totally matches yours!  Imagine that!  Only two of you, in all the known world.  But if that isn't wild enough, the next fact is truly beyond belief.  The other guy's cellular changes were caused by a viral the logical conclusion is that yours would have been caused by a virus, too. But your brain tissue contained. no. viral. organisms.

Cause of death?  A viral infection of the brain.

Inconclusive because....?!?............. no virus was present in your brain.

Well dad, what can I say?  Your status as the Ultimate Medical Mystery lives on. No one could figure you out as your life was leaving us in all those dramatic fits and starts.  And now that all your secrets have been laid bare, we are, acutely, none the wiser.    You were unknowable in life, and now you are enduringly unknowable in death.

It almost feels magical, this space you take up in our world.

I wish you were here with me tonight....we'd both be enjoying the fitting irony of it all.

p.s. You will never leave the inbox of the smartest man in the world.  How do I know?  Because he said so himself as he put down his rubber band and paper clips, shook our hands, and walked us out the door.  Well done, dad! Your science-nerd daughters are very, very proud.

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