© Photo by Bertie
Thanksgiving is next week, and I am reading about a major breakthrough from Israel in the treatment of ALS, the disease that took the life of my friend and mentor, Dr. Allan Rosenfield - husband, father, and former Dean of the Columbia School of Public Health.
Researchers at Tel Aviv University, together with scientists from Ben-Gurion and the Weizmann Institute, reported that by adding back a missing microRNA molecule, they were able to stop and even reverse the degeneration of nerve cells in ALS models.
ALS remains incurable, but this is the first time anyone has shown a way to arrest the process that destroys motor neurons. It is impossible not to think of Allan when I read about this advance.
ALS ruthlessly degrades all bodily functions except the mind, so the patient remains excruciatingly aware of each loss as it unfolds, with the added torment of knowing what is yet to come. Allan, being a doctor, understood all this with painful clarity. And yet he navigated his decline with elegance, grace, and even humor. He is the one who inspired and encouraged me to take a right turn in life and go into medicine.
Allan gave so much to the world - way more than I could begin to list here - and he was taken too soon—too soon especially because of work being done in Israel that may one day lead to a viable treatment, if not a cure, for this dreadful disease.
It is hard sometimes to take care of patients with incurable diseases that you know will one day be treatable, but that’s not the full story. There are also the diseases for which we now have treatments that did not exist before - treatments to save lives that once would have been lost.
My daughter, Georgia, is alive today because of surgeries for congenital heart disease that were unimaginable less than a century ago. She was born with a patent ductus arteriosus, ventricular septal defect, and double-chambered right ventricle - all repaired when she was nine weeks and then four months old, while her heart was still the size of a walnut.
The pallor, edema, and vomiting of her infancy are gone. What remains now is a proud scar down the middle of her chest.
And when I say “for which we now have treatments,” I mean, of course, only some of us. A small minority. In most of the world the expertise, infrastructure, and technology for such procedures remain far out of reach. Georgia herself noted as much after reading Abraham Verghese’s Cutting for Stone, a masterpiece of fiction set in Ethiopia whose main characters are doctors limited by the lack of such resources - though unlimited by devotion, experience, and skill.
So I find myself thinking about all that we have now, what we may have one day, what others never had or still don’t have, and how it all fits together - and the best I can come up with is the simple need for gratitude.
We hang by a thread—or, more accurately, we live under the sword of Damocles, which hangs by a thread - and yet the thread holds more often than we deserve to expect. Gratitude does not conflict with tragedy, grief or regret. It simply recognizes our human vulnerability - the thin margin by which life goes on against the odds, and the possibilities that open up in time for some and too late for others.
And if the problem is that this is all too obvious - this being grateful for what we have in the midst of an infinite maelstrom of alternate possibilities - even a bit cliched - and yet still deserves to be said - then maybe the solution is to say it better.
So here’s a poem by Ellen Bass, a Thanksgiving poem for parents and (older) children alike, which, like all good poems, hits harder when read aloud if only to yourself:
After Our Daughter’s Wedding
by Ellen BassWhile the remnants of cake
and half-empty champagne glasses
lay on the lawn like sunbathers lingering
in the slanting light, we left the house guests
and drove to Antonelli’s pond.
On a log by the bank I sat in my flowered dress and cried.
A lone fisherman drifted by, casting his ribbon of light.
“Do you feel like you’ve given her away?” you asked.
But no, it was that she made it
to here, that she didn’t
drown in a well or die
of pneumonia or take the pills.
Wasn’t found
lying in the alley
that night after rehearsal
when I got the time wrong.
It’s animal. The egg
not eaten by a weasel. Turtles
crossing the beach, exposed
in the moonlight. And we
have so few to start with.
And that long gestation—
like carrying your soul out in front of you.
All those years of feeding
and watching. The vulnerable hollow
at the back of the neck. Never knowing
what could pick them off—a seagull
swooping down for a clam.
Our most basic imperative:
for them to survive.
And there’s never been a moment
we could count on it.
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