September 26, 2011

This post was written by CHMP Senior Fellow Steve Gorelick who is Professor in the Department of Film and Media Studies at Hunter College of the City University of New York.

Author’s Note: When I first shared this childhood reminiscence of illness and death with Diana and Barbara, they asked the perfect question.  How does this connect to health policy? Then, with the kind of wisdom they seem to have in unusual abundance, they made a suggestion that I found absolutely persuasive.

Our very personal episodes of disease and death seem to occupy some of the most prominent and conspicuous places in our life narratives.  When they occur in childhood, they can take center stage and touch the very core of how we ultimately see ourselves as human beings. Small, sensory memories – perhaps the smell of alcohol used in an emergency room to clean a wound – can loom for years and continue to define our memory of ourselves at a specific time and place.

What I now see is just what an extraordinary problem this presents to anyone hoping to influence public health attitudes and policy. The messages we deem so important to public well-being   –related to nutrition, fitness, timely immunizations, PSA tests, mammograms, pre-natal care and all the rest —  have to do infinitely more than simply make sense and be supported by evidence.

They must penetrate nothing less than the most basic and profound narratives of how we see ourselves and our place in the world.   Even the simple decision to get a flu shot must joust with a host of memories of injections past, of unwelcome side-effects, and high-profile news stories of vaccines that may have been ineffective and even dangerous.  Suddenly a simple decision competes with a lifetime of experiences.  Not so simple.

What follows, then, are some of the experiences that still define who I am and how I remember and  imagine “the land of the sick.”

I have been trying to think of a way to tell you a story.

Travels in the Land of the Sick

And at some point, I remembered a wonderful essay written almost 25 years  ago by Paul Cowan. (“In the Land of the Sick,” The Village Voice, May 17, 1988). Paul, a wise man who was much too young when he died of leukemia, envisioned illness as a destination, a land of exotic customs and practices inhabited by the sick. The rest of us, he warned, were simply the “not yet sick,” travelers on an unpredictable yet inevitably  bumpy and painful road.

This is the world I have been navigating, as son and as son-in-law, as companion and as final witness.

It started last spring in the midst of a perfect storm of seriously ill parents, friends of parents, and the not unexpected, yet still shattering, death of the 10-year-old daughter of close friends. That her ten years were spent on a neurological and septic tightrope with a constant risk of potentially fatal infection didn’t even slightly lessen the pain of her loss.

What a strange trip to a strange land, traveling from one wrenching scene to another, from one city of the aging to another, from the slow suffocation that is chronic pulmonary disease to the encroaching dementia of Alzheimer’s Disease; from kidney failure to virulent and unforgiving pneumonia.  And overshadowing it all has been the larger human drama of watching this far-flung cast stripped of all the  self-deception that had long enabled them to imagine that they might never have to book passage. Yet there they were, well on their way, and no stories they could tell, no folktales or myths, could shield them from a slow-motion collision with their own fragility.

What I didn’t expect was that their collision would become mine.

Last May, standing at corner of Rowland and Lark Ellen Avenue in West Covina, California, I found myself surveying Rowland elementary school, a typical 1950s building in which I had attended kindergarten, third, fourth, and fifth grades. Instantly familiar were the two separate kindergarten classrooms at one end of the long block that, in 1950s style, had been walled off from the rest of the school.  And despite my struggle to stay an outsider amidst the failing kidneys and diseased lungs, I realized that, despite my “Wonder Years” fantasy, West Covina had been a place in which I too had once briefly been a traveler among the sick.

I stared across the street at the swings and noticed that they were in precisely the same place they had been on an overcast day in 1956, when my class of five and six-year-olds stood in line for polio vaccinations. I can’t recall the faces of the other kids, but the memory of all the mothers, lined up and looking on with anxious and relieved expressions — is vivid. I knew virtually nothing about the scourge that was polio, but I did know that my friend and classmate Robin Miele would not be receiving the vaccine because of the polio that had already withered one of his legs and one of his arms.

I wasn’t exactly thrilled to recall the pain of the injection, the anxious faces of the hovering mothers, and Robin’s grotesquely shaped leg.  For years, I had fought the idea that illness could define this idyllic place. This was where I had lived the moments that had been securely stored in files marked “hope and energy,” “teasing and flirting” and “stirrings of desire.” But some  memories are annoyingly insistent, and with hardly a thought I wandered down Rowland Avenue, away from my elementary school, in the direction of our small house on Hartley Street a half mile away.

I remembered. My mom and dad chose a doozy for our inaugural journey in the land of the sick.

1957, as some of you may know, was the year of what we then awkwardly called the “Asiatic flu.”  Those were years when anything vaguely threatening was quickly wrapped in stereotypes of Asian mystery and inscrutability. The strain that year was H2N2, a subtype of influenza virus A. In September, at the moment I began school in Mrs. Walton’s first-grade class, epidemiologists had noticed that infection rates in the U.S.  were unusually high among school children, young adults, and pregnant women. We know now that when children returned to school that fall, they quickly spread the virus and brought it home to their families.

All I remember is that three weeks later, my entire family – Dad, Mom, sister and I – were seriously ill with the virus, confined to our house, and being cared for by a woman whose only evident skill was the ability to consume all the food that our unforgiving stomachs were rejecting.

Yup, Sadie was a good eater. Years later, my Mom told me that even our  modest liquor cabinet was no match for her voracious appetites and that – on the day she left — only a small flask of some cloying yellow liqueur remained.

One moment was genuinely terrifying.

When we didn’t immediately recover, our new, young Rabbi was apparently suddenly seized by the realization that – whether in a pandemic, a locust invasion, or any other vaguely biblical plague – visiting the sick was part of his job description. Unfortunately, with all his good intentions, the visit started badly.

My mom could see the street from her bedroom window, and the sight of Rabbi Silverstein’s yarmulke and then the Rabbi himself walking up to our front door sent her into a full-blown panic, convinced that he was there for some Jewish version of the last rites. The poor guy was actually in his first job, making his very first home visit, and there was my mother standing at the door, greeting him as if he himself was the angel of death.  He eventually talked his way in, and we eventually recovered.

But no session of family folk-tales about the 1957 flu ever ended without immediately proceeding to a more serious incident. So I took off down Hartley Street and headed to the emergency room at what in 1958 was the “Inter-Community Hospital.”

Don’t laugh, but “memorial” was almost never included in the name of a post-war, suburban Southern California hospital. It was as if the absence of the word would hide the inconvenient fact that some people die in hospitals.

Death was an intrusion. It had ended in 1945, along with a war responsible for over 50 million fatalities.  In 1958, though, I found myself in that emergency room surrounded by several physicians frantically trying to revive me as they purged my stomach of the tasty bottle of toxic ant poison I had swallowed.  I am told that I did my best to rename it Inter-Community Memorial Hospital, but – after two excruciating stomach pumpings and a series of IVs filled with who knows what– I pulled through.

The hospital was now an assisted living facility. I walked in and, feeling completely foolish, found myself thinking of the two doctors whose hoses and contraptions and treatments had saved my life. I found two completely baffled young receptionists, and bored them with the story of a kid who almost died. They were polite. And for the first time in my life, I played the role of the babbling old man telling a slightly-too-long to polite people who probably couldn’t wait to forget.

But now I couldn’t stop. I had one more stop. Mel’s house was down the street.

I started down the palm-tree lined Lark Ellen Avenue toward the home of my good friend Mel Dubin. This was the house where I visited 11 year old Mel during the summer in which he died of an aggressive brain tumor. Five decades later, I could still remember the smile that nausea and chemotherapy were unable to wipe from his face. I wondered what kind of man he might have become and whether or not that tumor was one that can now be successfully treated.

I started to leave. But not before I began to taunt myself:

“What is the point, Steve, just what is the point? Of course you have to remember the past, but enough is enough. Mel was dust, his parents only rescued from a lifetime of grief by their own deaths, and how much do you really care about a kid that, if you really think about it, you can hardly remember?

“Maybe this is just you and your predictable proxy grief, when Mel or who knows who stands in for more recent hurts too fresh to acknowledge. Cut the faux poetics, drop the hyperbole, and get to what’s really on your mind.”

The problem is that when I did cut though, Mel was still there. And I realized that a deep wellspring of sadness remained, opened and never closed because our parents thought that when things got really ugly I shouldn’t see him again.

There were no goodbyes or handshakes. Mel simply disappeared. I didn’t lose him, I lost him.

A week later I was on an airplane, heading back to New Jersey.

It was a brief sojourn. A quick stop by a guy still residing among the “not yet sick.” I knew, though, that I was only a temporary resident and that someday I would face my own journey.

I may not trust myself to be either resigned or ready on that day, and there is no reason – none at all – to imagine I will act with even a hint of heroism, but it really won’t matter whether I go gently or whether I rage.

The journey will begin.

Steve Gorelick