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What is the difference between living forever and just lasting forever?

One of my students posed this question in class last week, and I think she nailed it exactly.  We were discussing Robert Heinlein’s story, “Methuselah’s Children,” where his biblically long-lived characters, called the Howard families, encounter a race of immortals who survive through a hive-mind that erases their individual identities.  Are they living forever, or just lasting forever?

What would make us immortal?  Being aware forever?  Being physically able to walk the earth forever?  Or having our words, our memories, or our genes persist through all time?

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In Hebrew the word for “answer,” teshuva, comes from the same root as the word “return,” shuv.

So when someone returns a prayerbook to you, is it an answered prayer? You remember the one – the one I thought would never come back, the one that was a silent witness to a massacre. It came back to me this week, wrapped in white archival paper and tied with a string. My most heartfelt thanks to Eric Lidji, from the Rauh Jewish Archives, for putting the pieces together when he read my previous post about it and realized he had seen the book.

I am praying from this book again, feeling like it is possible to once again feel that I am my prayer. I am hearing by email from the friend who I prayed for in that piece. I am able to feel hope again.

I see people every day who were broken by tragedy, devastated by illness. sometimes decades ago. This week I feel like even for them, there is still hope we can return them to wholeness. We can give them an answer. The world may never be the same – but it will be better than it is now.

We exchanged a series of sheepish looks as she spoke – Kelly with me, me with her daughter, her daughter back to her.

“Everything on the left side – first the neck, now the leg, what’s next?  The stomach?  The kidney?”

She was wrong, though.  There had been a problem, the right shoulder and neck, with almost the same symptoms.  This went away, then the identical complaint returned in the other shoulder.  I reminded her of this.  We all laughed, but it did not ease the frustration for any of us.

“You’re right.  I just seem to get better from one thing so something else can go wrong.”

I’ve always been captivated by the power of the Exodus narrative as a parallel for illness.  The Exodus from Egypt is crucial to understanding the Jewish take on the world, but there is a certain universal appeal.  In the first chapter of Healing People, Not Patients, I recall how my teacher, Rabbi Larry Heimer, introduced me to an interpretation of the Exodus by Rabbi Yitz Greenberg that shaped how he, and in turn I, thought about illness.

The Hebrew for Egypt, Mitzrayim, is the equivalent of the English, “in dire straits” – stuck in a narrow place from which escape seems impossible.  Greenberg explains that by being in bondage in “Dire Straits,” the Israelites were in a state that God never intended human beings to endure.  Slavery is not the natural condition of humanity.  The Exodus, in turn, is proof that when humanity suffers, God hears, and God cares, and God acts.

Modern humans stand in for God in acting to relieve each other’s suffering, including getting each other out of dire straits.  The Exodus imagery is supposed to remind us that healing is possible, and that we are supposed to reach out our arms and perform some signs and wonders of our own to make it happen.  Modern medicine is nothing, if not signs and wonders galore.

But chronic illness confounds the metaphor.  If illness in general is Mitzrayim, then chronic disease is Pharoah.  “I’ll let you go.  On second thought….  Naaaah, changed my mind.  Back to work!  Build those pyramids!” 

The plagues are powerful medicine, to be sure.  “Frogs?  No, not frogs!  I give!  You can go!”  But no sooner do the Israelites start packing to leave than Pharoah has another change of his hardened heart.  Kelly can relate; every time we unleash a good plague of muscle relaxers on one pain, her personal Pharoah comes back with a vengeance in a different limb. 

If you don’t believe Kelly, ask Yuri, ready to return to work after a long illness, smiling and hopeful in my office one week, only to return two weeks later because the dizzy spells returned after only three days on the job.

Or ask a cancer survivor, finally daring to dream and plan again after 4 ½ years of living scan to scan, who learns of a spot on the 5-year scan that means he is back to square one – only with fewer options.

Ask a person finally ready to cut the cord from medication after a long journey with depression, only to find herself on the edge of the precipice once more after the unexpected death of a close relative.

For the person living with chronic illness, there is a problem with the Exodus narrative.  For all that God promises, that doctors like me who have a hard time remembering that we are not God promise, and for all that we may deliver on some of our promises, at the end of the Exodus from one sickness, after the crossing of the Red Sea that is the ringing of the Mayo Clinic oncology bell, the return to work, the dancing at a wedding, for all that, the true end result of the Exodus is to find yourself wandering in the desert for 40 years, relapsing and remitting, having good days and lousy ones, until someone who is not you eventually gets to see the promised land of being chronically well.

A couple of nights ago, I participated in a Twitter chat called #medhumchat, discussing the poem “Intensive Care” (and if you like what I write you should participate too; shout out to Colleen Farrel, MD, aka @medhumchat for coming up with this).  The poet likens the ICU to a ship adrift at sea, with no instruments – even though the ICU has instruments coming out the wazoo (sadly, both literally and figuratively).  It is the kind of ship likely to end up stuck in a narrow place – to be caught in Dire Straits.

I’m not sure how to change this story.  The Israelites of the original Exodus wandered because they were still stuck mentally in their narrow place, never truly believing they had the agency to be free.  I think we may be making the same mistake – so stuck in the narrow place of a disease model that envisioning well, especially sustained wellness, is impossible for us. 

How else to explain my shock when I meet a person over 80 who tells me they take no regularly scheduled medications?  How else to articulate why I get worried, not happy, that someone I care for frequently drops from the radar for 2 or 3 years?  It couldn’t, God forbid, be that they are well – there must be something terribly wrong that isn’t getting my attention, right?

The way to change the story, I think, is to realize there’s another way to read the analogy.  Yes, the person with the chronic illness is like the Israelites in Mitzrayim – but so is the healer.  Until we healers learn to stop saying, “No, you’ll need to take that medicine for the rest of your life, side effects or not,” or to stop telling people to cancel vacations and grand plans, or to stop acting like the purpose of old age is to stay safe instead of to live, we are all destined to be stuck here in Dire Straits.

At least they have a good house band….

The next #medhumchat will be at 9 pm on January 16; search the hashtag on Twitter to find out which readings Colleen has chosen and join in!  I found it a great antidote to my own Dire Straits – a really good way to read situations differently.

Even when you are a “Healer Who Listens,” there is a time to stop listening and speak up.

King Solomon, writing under the pen name of Kohelet (Ecclesiastes), said, “There is a time to speak and a time to be silent.”  Normally, this is excellent advice for doctors who have been shown in study after study to interrupt our patients after somewhere between 11 and 23 seconds after they begin speaking.

But what if you sit on the board of a health system that routinely engages in “upcharging” insurances? Employs physicians who routinely provide care that is marginal at best and unsafe at worst in order to maximize revenue?  Is more interested in patient “throughput”than human input?

Last Monday I sat with the combined boards of the Jewish Healthcare Foundation and its three operating arms trying to answer exactly this question.  How do healthcare boards, made up of powerful,influential, knowledgeable people in the community, suddenly become bystanders to all sorts of malfeasance by the hospitals and healthcare systems they purport to control?

You can guess at the answers.  People see these appointments as ceremonial rather than hands-on.  The group-think stifles dissent.  Medical providers on the board don’t feel qualified to comment on financials and the finance people don’t feel qualified to comment on clinical matters.  The financial bottom line is the real mission,regardless of the mission statement.

But one recurrent answer struck me: the way the whistle-blowers are ostracized.  Boards maybe passive bystanders, but there’s usually one squeaky wheel that speaks up.  You know the one – and you know what happens to their career afterward.

The phenomenon isn’t new. A famous story in the Talmud, which I had the opportunity to examine again this past week, tells of a new type of oven that is supposed to be constructed so that it cannot become ritually impure.  The problem is that the rabbis deciding whether it meets that standard all say that it fails – except for one, Rabbi Eliezer.

Eliezer tries every line of argument he can think of to convince his colleagues that the oven does what it claims.  When all logic fails, he resorts to miracles – rivers flowing backward, trees uprooting themselves, even literally bringing the house down.  The other rabbis hold fast, even when a heavenly voice calls out to them, “Eliezer is right!”  “It’s not up to Heaven anymore,” they say.

They don’t stop there, though.  They invalidate every ruling Eliezer has ever made on ritual purity and ostracize him from the community – and the consequences are dire, both for him and for the community, eventually leading to the death of the rabbi at the head of the group (this is the part usually left out of the story when it’s told in school).

What is missing from Eliezer’s story, and what is missing on bystander boards, is a second voice.  One person screaming about the evidence and the morality of a position, no matter how correct, is a nuisance and a crackpot. But as several people at the board retreat pointed out, a second – or God willing, even a third – voice, saying, “Hey, wait a minute, I think they may have a point,” changes the conversation. Are they both grandstanding?  Are all three of them over the rainbow?  Not as likely.

The Foundation, and particularly its Pittsburgh Regional Health Initiative arm, has made its mark in the patient safety movement.  A hallmark of that movement is listening when a patient, a nurse, a surgical tech, or a doctor says, “Hold everything, something’snot right here.”  Just as important is recognizing that the person calling a halt isn’t trying to sabotage the surgery or cost the hospital money – they are trying to prevent harm to a human being.

How much damage could have been prevented if one other rabbi would have said, “You know, Eliezer’s pretty smart.  Maybe we should take another look at this oven?”  How many lives could be saved if the next time someone states an uncomfortable truth at a hospital board meeting, someone would say, “You know, Dr. Jeremiah really knows her stuff.  We need a task force to look into this problem right now?”

Healers, our job, wherever we are in the system, is to be that second voice – not a bystander, but a stand-by-her, if you will.  Just like we need to avoid anchoring in our first diagnosis and ignoring the signs of some other brewing trouble, we need to avoid anchoring in the-way-we-always-do-things, or the-way-everyone-else-is-doing-things-now, and listen for signs of trouble in the system.  Everyone has an interest to serve – our interest is with the people we care for.

People often ask me about burnout, both colleagues and laypeople.  I appear to them to be asking so much of the healer, to give each day from the depths of their soul and to bring light into darkness.  How can I possibly keep from burning out?

Because when I need it most, the people I care for bring the light right back, that’s how.  On this last day of Chanukah, I thank everyone who has shared their light with me, no matter how much they were hurting at the time, to rekindle my own flame.  You are the reason my oil keeps burning, long after it should have burned out.