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.

Introduction to an Ordinary Journey Through Health, Illness, and Age

This is the first of a series of essays on health, illness, and age that will be posted weekly.

I’d like to talk with you about the intermingling of health, illness, and aging.  They have become inseparable for me and, I imagine, for many of you.  I spend more time than I’d like or ever thought possible going to doctor’s appointments, trying to decipher what they are telling me, and making decisions that sometimes feel like shots in the dark.  My moods swing with the visits, the reports, and the outcomes.  Family and friends are almost always compassionate but they also have their own needs, fears, and schedules, and it is only right to attend to them, too.

For the last few years, I’ve been dealing with a hiatal hernia—my stomach moving through my diaphragm and up into my chest—and the hullabaloo that it has created in my life.  It has required tests and surgery and recoveries, speculation about how the treatment will go, sometimes obsessive observation of the outcomes, and trying to make meaning of those outcomes.  Will I be more limited?  Will pain become chronic?  Is my aging accelerating?  What and who can I depend on?  I don’t like all this attention to bodily functions but I don’t know what the alternative is.

Let me offer an example.  A few years ago, I began to feel tired, not sometimes but most of the time.  My legs felt like they were weighted down.  Walking felt effortful instead of easy and joyous as it had for most of my life.  It certainly didn’t feel like it was toning my muscles or any other part of my body.  It left me exhausted, and I began to nap instead.  The weariness was not so dramatic that I thought I was ill.  So I turned to the most obvious explanation: I had passed my seventieth birthday and I must be getting old.  “I guess this is what it’s like,” I thought, “and I had better begin to adjust to this reality.”

As it turned out, I had iron deficiency anemia.  Not good but, treatable through infusions of iron.  Within a few weeks of beginning the infusions, I felt like my old—or my prior—self.  What an unbelievable relief.  Not just that I hadn’t marched too far into old age but that I could do something to effect my health.  At least in this case, I could have some say in the matter.  I was not a passive victim but an active contributor to my well being.  I had conflated aging with ill health, which is easy to do, especially as we grow old.  We really don’t know how to interpret changes in our bodies, but we can surely learn to do it better.

For the last three years, I have been writing in my journal in an effort to make sense of the hernia, anemia, and aging processes.  I have needed the privacy and perspective that my journal offers.  But now I feel a little more comfortable with myself, and have begun a series of brief essays that trace my journey with illness, doctors, hospitals, family, and my own psyche in order to raise a number of themes that I believe we share.

In the spirit of Charles Dickens and all those wonderful nineteenth century novelists,  who serialized their work in weekly newspaper columns, I’m going to post these essays over the course of time as an unfolding story.  My hope is that this will permit readers to take some pleasure in their own detective work.   You have all had direct or indirect experience with illness, injury, doctor’s visits, surgery, gratitude, and frustration with the health care system.  When you learn, for instance, that I have been anemic, I imagine that you will bring your own associations to feeling weak or slow or blue.  I would expect you, like the Google-infused medical detectives we have all become, will use your own knowledge and experience to begin building a diagnosis.  What causes anemia?  What impact does it have on the rest of your body and your emotional life?  We will travel this path together.

Woven into the narrative, there will be discussions of general themes.  How easy it is, for example, to conflate illness and aging.  How do we lay people navigate the complexity and, often, the impersonality, of the medical system.  The difference in passive and active approaches, acceptance and fighting, “realism” and hope.  What is the story we tell and the story we are told about a particular problem?  The intersection of personal and medical narratives profoundly affect how we experience illness, health, and aging.

Then there are times when we are caught between the choice of “solving” something once and for all—let’s say, through surgery—or patiently observing the course of a problem in order to build a stronger hypothesis about what’s going on. There are many times when doctors are indirect or disagree among themselves; and we are left to push towards clarity or to make decisions that we are unqualified to make.  What to do in these tense circumstances?  Sometimes family members, because of their own temperament or schedules, want matters resolved quickly or want to hold off to the last possible moment; and you have to decide how ‘self-centered’ you want to be or how decisive you can be in the face of opposition.

Over the last several years, I’ve gotten to know the routes to the Massachusetts General Hospital and the Newton-Wellesley Hospital at least as well as the route to pick up my grandchildren at school.  I know the side routes, the ones that avoid traffic, the ones that feel more relaxing.  I know the best places to park, the best way to reach medical assistants.  I’ve gotten pretty good at reading my medical reports over my internet portal, where I have my own special password.  In short, I’m becoming quite the expert on negotiating the practical side of of the medical system.

I’ve also come to know myself better—probably the main reason I am writing about my experience.  What strengths to call on in myself and in others, or which anxieties I can anticipate and not double down on.  Getting anxious about the prospect of anxiety, for example, can worsen matters immeasurably.  I have learned to let some fears to just flow by, paying them very little mind, and never letting them capture me.    I have learned a good deal about the tendency to conflate illness with aging, which sometimes robs me of the capacity to make firm decisions and to thrive in difficult times.  There is some wisdom to be had by paying attention during this journey.  I want to share it with you and to have you, in turn, share your own wisdom.  Let me know what you have learned.