Exhaustion: the Power of Narratives on the Experience of Health and Illness

This is the second installment in my weekly series, An Ordinary Journey Through Health, Illness, and Aging.

Those of you who read the introduction to my health and aging series already know that about three years ago, I began to feel weary.  My legs weighed two hundred pounds each.  My daily walks were more a struggle than a pleasure.  By the end, I felt stooped and out of breath.  Exercise felt more like tearing down than building muscles, and it left me exhausted.

I found myself skipping days and replacing my walk with a nap.  I had never been a napper.  In my family, napping was scandalous, almost sinful.  It represented laziness, nothing good to do, not caring, not trying, not anything.  It was bad.  And I was enjoying the naps all too much.  At heart, it felt like a withdrawal from myself, a betrayal of values as much as a physical experience.

I had always prided myself on my energy.  I could work and take care of my children, work out, run and play tennis, and take on building projects around the house.  Nothing thrilled me much more than the two summers and 100 weekends that I spent building a house in New Hampshire.  For vacations, I went backpacking in the Sierra Nevada Mountains, hiking mile after beautiful mile above tree line, with fifty pounds on my back and a feeling of freedom and serenity to keep me company.  I built organizations, wrote books, and took care of patients.  If I got five or six hours of sleep during the first fifty years of my adult life, that was plenty.  There was always much to do.  And I loved being the kind of guy to do it.

For most of my life, I was also healthy.  I felt almost invulnerable long after I should have, believing in some magical way that my immune system was a great friend and wouldn’t let diseases lay me low.  As a child, I had a couple of warts that embarrassed me no end. So I decided that I could get rid of them.  All I had to do was focus mental energy against the warts’ assault on my vanity—a bit of magic that came from some odd recess of my brain.  But the warts went away.  It was only as an adult, when I did a great deal of reading in mind-body interactions, that I learned that warts were particularly susceptible to the influence of the mind.  As a result of this proud or arrogant attitude, I didn’t wash my hands as much as I should have, I didn’t wear coats in winter.  Cold was a matter of mind, I told friends.  I ate and drank whatever I pleased and in gargantuan quantities.

It’s true that having cancer at fifty eight put a dent into the belief in my invulnerability.  And, to be honest, when my father had died at fifty, I imagined the same fate awaited me. I was really of two minds.  Certain that I would die young, probably of cancer, like my father, and equally certain that I was healthy as a horse who could fight off disease like swatting flies on a hot day.  These two belief systems didn’t seem to mingle very much.  They had pretty independent lives.  But I was hale and healthy most of the time, and that became the dominant story that I told myself.

Just before I began to weary, I was in the hearty frame of mind.  Cancer was now more than ten years in the rear view mirror.  I was in the midst of building the Institute for Nonprofit Management and Leadership, which trained young, active nonprofit leaders and emphasized both diversity and social justice.  My heart sang to its mission and to the great young people I worked with.  I got to know literally thousands of people in the Boston area and, finally, began to feel at home here, and not the transplanted New Yorker or isolated psychotherapist I had been .  I was feeling good, feeling at one with myself, feeling almost giddy with success.

Then, suddenly I tired.  What the hell was going on?  My first hypothesis was depression.  I lean that way.  I hadn’t been feeling depressed but, with a setback at work that coincided with the weariness, my disappointment married the weariness to form a story: I was tired because I was depressed.  Once this narrative settled in, I made up supporting stories about why I might be depressed.  For instance, maybe some of those skeptics were right: an old white guy like me couldn’t—shouldn’t?—try to build training programs for young people or people of color. That’s what one foundation president had screamed at me.  Maybe I’d reached my limits and needed to turn the organization over to others.  Maybe I was done.

There was another, reinforcing story that was available, as well: my children, then 42 and 34, had grown so damn independent.  They didn’t need me.  They loved me and we had formed wonderful adult friendships, but they didn’t depend on me.  That was rewarding but also sad. Then, too, a friend had died and another was hospitalized with dementia.  I might become a lonely old man.

You get the drift.  When you receive a blow, a shock, you often latch onto one of several stories that drift in and out of your mind just waiting for a catalyst to make them real.  It’s almost like a pathogen in the blood stream looking for red cells to carry it to vulnerable places.  If you think about it, there are only so many narratives—and themes—that define how you think about yourself.  Sometimes they combine and build power.  Sometimes they don’t and the power of the narrative to define your experience dissipates.  In this case, most of my life felt really good and the depression narrative didn’t stick.

The next and most compelling hypothesis readily leaped out of the dark: I must be weary because that’s what people feel as they get old.  I hadn’t even felt old before but there’s always a first time.  Each person probably tires at different paces but weariness is as inevitable as death.  There was a part of me that welcomed this narrative.  I had worked hard through my life.  I had striven.  I had tried to please and succeed.  Maybe it wouldn’t be bad to rest more, especially if it wasn’t me giving up but a natural condition that was limiting me.  Age sanctioned rest.  Amen.

Others noticed that I looked tired, that I wasn’t exercising, that I was missing a certain fire.  My children seemed to be growing a little solicitous.  “Dad, sit down.  I’ll do that.”  That felt wonderful and terrible.  I appreciated their concern and their help; but I’m a pretty independent guy.  I haven’t liked asking for help, or even being helped.  Still, I thought, I better get used to it.  I had better begin to adapt to being old.  I shouldn’t fight reality.  I should make the best of exactly who I am at any given time.  Isn’t that the mature thing to do?  I supposed that there were a whole lot of things I’d have to adapt to, including a different image of myself.

This narrative of age, maturity, and realism was very seductive, very hard to cast off.

Stepping back, I believe it is almost impossible to avoid conflating aging and illness.  There are so many moments when we are down or ill, moments that, at an earlier age, we would ride through—because we would tell ourselves a different story.  “I’m working too hard” or “I’ve had a rough go lately.”  But weariness fits my imagery about old age.  So does a degree of infirmity, waning memory, and increasing degrees of illness.  Certainly in our parents generation, seventy or so would be old.  AARP tells us we’re old or aging at 50 and lauds us for still being able to walk and talk reasonably.   At seventy one, I’d have to concede that old is old.

It is true that old age comes with limitations, but the stories by which we give meaning to the limitations are formed by a combination of our own and our culture’s narratives.  Sometimes, those narratives distort and limit our experience.

Some part of me fought to free myself of these limiting interpretations.  I searched for other ways to explain the weariness.  As often as not, we discover that the problem isn’t aging—or aging alone—but a specific, treatable problem.  In my case, it was iron deficiency anemia, which could be treated with intravenous infusions of iron, which added tremendous zest to my life.  More about that in our next discussion.