Living Between Worlds

I grew up idealizing the intellectual life, probably wanting to realize my father’s barely articulated and utterly unrealized dream for himself.  Without the faintest idea of its origins, I yearned to be a learned man, a respected man, a secular version of an ancient Jewish tradition. By the time I entered college, I anticipated passionate, late night conversations about every topic under the sun, and hoped to form a community of like-minded friends.

Over the years, I have constructed my study as an homage to that vision, probably modeled on photographs of the studies of my intellectual heroes, William James and Sigmund Freud.   Even now, my study–with its shelves and shelves of books, ‘hi fi’ equipment, art and knick knacks–speaks to that ideal.  Each day, it surrounds and comforts me.

Recently, I’ve discovered what I have most liked about that imagery.  It’s the sense of belonging that I see in the photographs.  James and Freud seem so much at home in  their cultures, confident that they were the right men in the right place.

In some small way I have realized my dream.  I am a cultured man and belong to a small tribe of like-minded men and women.  I’d love my children and the many young people I’ve worked with to understand what this small achievement has meant to me, and what it would have meant to my father and my grandfather, how it signifies the upward passage of generations, from immigrant laborer to businessman to professional to intellectual. But I don’t think young people see it that way.  I might have won a prize and joined a club but the prize and the club appear to be outdated, unappealing, even invisible to them.

The best chance I had to join the intellectual tribe of my early dreams seemed to be academia but I didn’t find companionship during graduate school.  It felt staid and lacking in passion—not my tribe.  So I set out to test the hurly burly of life outside its gates, hoping to find a new community to work and identify with.  My work soon focused on helping others, as a psychotherapist, social activist, and nonprofit  entrepreneur. During the last two decades, I have been especially drawn to young people, with an emphasis on young people of color in nonprofit organizations dedicated to social welfare and social justice.  It turns out that they feel more compelling to me than university scholars .

Their identity as outsiders and their experience as immigrants or children of immigrants feels like the people I grew up with.  Until I went off to college at Harvard, for instance, I had never met a WASP, a Brahmin, a person whose cultural identity wasn’t hyphenated.  Every one of my acquaintances knew, first hand, how unacceptable they or their parents had been in America.  Everyone was fierce in insisting that they belonged.  Every one of them also felt like they were the real America. I feel more connected to them than to the intellectuals.  This tribe was closer to my heart.

In essence, it is their marginality that is deeply resonant to me.  Like me they are neither outsiders nor insiders in American society, which is how I have felt throughout my life.  I have never fully belonged to any group.  Like them, I have lived in between, on the margins.  This position, this identity, disturbed me for many years.  I felt strange and lonely—until I realized that virtually all of my close friends were also marginal.  We all had one foot in the establishment, with good jobs, professional status, and homes of our own,  and one foot in- left wing politics, eastern spiritual practice, or we were shaped by some deep personal “anomaly.”  They have been my community.

My professional life has consisted of one challenge after another to establishment institutions and theories.  In the seventies, we built the family therapy movement, challenging the old men of psychoanalysis, with their inward focus and refusal to look at the great wide world.  In the eighties, we tilted at the windmills of the American medical system, with its emphasis on cells and organs instead of people.  By the nineties we tried to take on corporate America’s indifference and, even, hostility, to the particular strengths and weaknesses of older workers.  It was hard work but great fun, and however much we felt like outsiders, we were deeply connected within our little cadres of rebels. It wasn’t the mainstream tribe but it provided a sustaining sense of belonging.

The young people with whom I’ve connected over the decades love hearing stories of those rebellious days.  They especially love stories of my being a provocative outsider, a position that makes them proud. In one, I am lecturing psychiatrists and psychologists at Massachusetts General Hospital in the Ether Dome, the hallowed hall of the first surgeries in America.  You have to be an insider to be invited to lecture there. The seats in the Ether Dome slant steeply upward.  The lectern is at the bottom and, as you crane your neck, it feels you’re talking up to the gods, which is how those men in white suits thought of themselves.  I tried to explain how important it was to look beyond the internal world of unresolved childhood conflicts and more towards the influence that families exerted on their immediate members.  Focus on people, not ghosts, I insisted.  Within ten minutes of the lecture’s start, the gods began to boo–literally, MDs booing.  Some began to leave.  Then I left, too, which, for some strange reason, shocked them.

I’m pretty sure that my mother would have enjoyed my provocations; and as the years have gone by, my father’s voice has yielded to hers and to her love of adventure.  Her favorite book was Kon Tiki, the story of Thor Heyerdal’s wild journey on a reed raft across the Pacific.  My mother was a good suburban wife, I suppose, but not in her dreams, and not by mid-life, when her radical politics and budding feminism grew stronger—and with it, a sense of belonging with her compatriots.

I see now that I could never fully belong to one world when there were two powerful voices living within me.  I would always position myself between worlds—and grow comfortable in that place.

I am retired now and the temptation is, once again to retreat to my study, to the comfort of books, Beethoven, and paintings.  I could seclude myself in my condo development, mostly populated by older people.  Like everyone else, old people tend to gather among their own ‘kind.’ We see this all the time in retirement communities and in independent and assisted living facilities. There is such comfort in familiarity.

But I remind myself that I am a marginal man, most comfortable with membership in many tribes.  Then I increase the number of young people I take on to mentor and the number of nonprofit boards I serve on.  I very much need the freedom to move between worlds.  I very much need to end my life as I have lived it, on the margins, happily joined with my marginal communities.

A Momentary Solution: It’s Anemia

This is the third in my series on health and aging, describing the mingling of medical, professional, social and psychological themes that mark the search for problems and solutions.

 

There are moments during a journey of some length when you come to a stop, not knowing which direction to take or even whether it is possible to return to the start.  In my case, the pull to return, the desire to be energetic and younger was very strong.  I found myself dreaming of my youth, awestruck by the exuberant energy of young people as I passed them by, imagining magical exercise routines that would restore my vitality.  But these were brief excursions, and I was never far from the reality of my weariness.

Was the aging process simply speeding up?  Was there some mysterious cancer that had invaded my body and captured my blood?   Some of the tests lent credence to that fear since that was what they were trying to “eliminate.”  God, that word is ominous, even when it is mentioned in a simple clinical way.  Did I have Lyme’s Disease?  Chronic fatigue syndrome?

After a wonderful hike in the Sierra Nevada Mountains, a friend and I had reentered civilization to find that the World Trade Center had been bombed.  Unable to fly home to Boston, we high jacked our rental car and drove the length of the country in four days, eager to see to our families, eager to ease their fears.  It was an oddly anxious and exhilarating trip.  He was fifty-nine and I was sixty.  There was danger in the air.  What bombings might follow.  We listened to public radio every mile of the trip, wondering if we’d have to get onto smaller, safer roads.  And there was danger in the long hours of driving, but we reveled in our ability to do it.  A few weeks after our return, though, my friend was stricken by what was later thought to be a tic born disease, a western version of Lyme’s Disease.  In the fifteen years since, he has suffered constant and debilitating pain.  His was a nightmare too close.

In spite of the terrors that invaded my mind, the well worn path of medical inquiry took precedence.  It was clear that I was anemic.  The blood samples quickly outed the iron deficiency anemia that had robbed me of my energy and threatened to capture my soul. There was a specific reason why I was weary and weak.

But what had caused the anemia?  The doctors found no chronic bleeding and loss of blood to explain it.  They wondered if my years of taking prilosec, which inhibits the metabolism of iron might be the enemy; so I stopped taking the wonder drug that had saved me from years of gerd.  They thought that, to some extent, the radiation therapy in my pelvic region, fifteen years in the past, had created so much scar tissue that I could not produce iron in the old quantities.

One doctor, then seemingly a maverick, found a hiatal hernia—part of my stomach had moved upwards, through my diaphragm, and into my chest.  The rubbing of my stomach regularly moving up and down through the diaphragm “must have caused a bleed,” he said.  He proposed surgery to bring the stomach back to its original home and to secure it in its rightful place.  But even he could find no bleeding from this movement, and surgery seemed like an extreme and intrusive intervention.

By then, I had heard too many and too disparate explanations.  It felt like the parable of the wise men, blindfold, feeling the elephant, and confidently deciding it was a tree trunk, a huge snake, and a hillside.  Each was looking at one slice of the pie and acting as if the others didn’t exist.  I was growing distrustful of the doctors at the hospital where I had been treated, even though it is very a well respected arm of one of the world’s great hospitals.  In my confusion, I now wanted the best.  I wanted to go directly to Massachusetts General Hospital.  So I called a friend, who is a prominent physician there, and she set me up with a world renowned gastroenterologist and hematologist.  I also insisted that they consult with one another in order come up with a shared analysis that would lead to the best diagnosis and plan of action.

There are two, maybe three remarkable themes that emerged from this period.  First, let me state the obvious: compared to most, I am incredibly privileged.  I have excellent health insurance because my wife and I can afford it.  My wife and I read, she far more than I, and we know much more about health and health care than most people.  And I walk in the very thin air of people who know people.  I could call on a friend who could call on a friend and get me an appointment with the best doctors.  Not only that, they were very friendly to me, a friend of a friend.  That’s privilege.  Most people don’t have it.  They may find great medical care but they may not.  The chances are random.

The second theme has to do with the fragmentation of medicine.  Even with the new information technology systems and shared files, doctors frequently do not see the whole picture.  They do not collaborate closely with other doctors.  They may read reports on line but they often don’t talk—they say and I believe them that there isn’t enough time.  Yet it is only by talking, reading between and beyond the lines of reports, and stimulating each other’s thinking that true collaborative thinking takes place and leads to the best treatment.

These days, physicians are not as narrowly focused on single organs or bodily processes as they were a few decades ago but they also do not seem that inclined to look outside of their own areas of specialty.  Friends tell me that it is hard enough to keep up with their own specialty.  No doubt.  Medical knowledge is exploding at an exponential rate.  But it seems to me that medicine has to take the large view.  How can you understand what’s happening with one organ without knowing what’s happening with the others.  How can you know about the course of an illness without knowing whether people are taking their medicine, doing their exercise, eating proper food.  This kind of holistic approach is rare.  There are too many explanations of narrow medical focus, only one of which concerns time: how much can you learn in a ten, fifteen, even thirty minute medical interview.

This is a longer discussion that we may take up some other time.  For the moment, I do want to emphasize how much burden the narrow view places on a person who is ill and  relatively ignorant and confused, and, for that matter, on their primary care physicians, the professionals who know least about specific diseases.

Let’s return to my story. At MGH, my two doctors—after lots more tests—decided that they would choose the least intrusive approach.  They would prescribe iron infusions, taken intravenously every six months.   We would see if the infusions helped and watch the hernia to see if it was growing.  Within a month or two, my energy returned.

That was an extraordinary experience.   I felt much better, like myself.  I was full of energy.  Not only did I feel better, but I realized that my weariness was not a matter of age but blood counts.  Between good medical treatment and good self discipline—I ate in an extremely health way—I could actively affect my physical well being.  In fact, the healthy diet eliminated my (slightly) high blood pressure and my pre-diabetic condition.  I was taking virtually no medicines and feeling great about that.  My body was once more, at least for a while, my temple.  And I was one of the priests.

For a while, the discipline felt terrific and aligned perfectly with my desire to feel clean and crisp on a day to day basis and to feel in control of my life.  I could do something about my life.  An optimistic and productive period followed.  My energy returned.  I felt buoyant.  I felt healthy.  I felt my life was back in my own hands.