A Starting (and Startling) Insight

Susan Sontag, Illness As Metaphor (1978), foreword, p. 3, Farrar, Straus and Giroux

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

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A few weeks ago I found out about a good, important and long-time friend who is wrestling with "end-of-life" issues. That, of course, is a fancy way of saying he is in the advanced stages of a life-threatening, terminal illness. We've talked on the phone a few times and I have spent a great deal of time reflecting on the issues he is facing- and which we will all deal with some day. Being in the second half of my sixties it is obvious that I am closer to that than I am to birth. I have also been through many times of people dying in my life. Grandparents and parents, aunts and uncles, cousins and a nephew, best friends, a college roommate and hundreds of church members have all "passed on" during my life. In the past couple years one of my best friends learned of a genetic disease which places him at risk; another has been through some real medical difficulties emphasizing his health concerns; now the person who was there at the beginning of my adulthood, helping me discover what it means to be me.

Last week at work one of our doctors gave a talk that included the above passage from Susan Sontag. The phrases- "kingdom of the well" and "kingdom of the ill" resonated as did the thought that one day we all will exchange our "passports" from one kingdom to the other. I remembered the essay, but needed a refresher so I read the book. It is an "easy" read as Sontag gives us a history of the use of metaphor to describe first tuberculosis and then cancer. (Note: She later updated this to include AIDS.) The book was written in 1978, more than 35 years ago and may be at least partly responsible for the changes that I could sense in the specific metaphors she was dealing with.

Here, from Wikipedia is a summation:

[S]he challenged the "blame the victim" mentality behind the language society often uses to describe diseases and those who suffer from them.

Drawing out the similarities between public perspectives on cancer (the paradigmatic disease of the 20th century before the appearance of AIDS), and tuberculosis (the symbolic illness of the 19th century), Sontag shows that both diseases were associated with personal psychological traits. In particular, she says that the metaphors and terms used to describe both syndromes lead to an association between repressed passion and the physical disease itself. She notes the peculiar reversal that "With the modern diseases (once TB, now cancer), the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease–because it has not expressed itself. Passion moves inward, striking and blighting the deepest cellular recesses."
-Link

Sontag was reacting to some of the then "alternative" therapies such as the use of psychotherapy, that ended up causing many people with illnesses to see it as their fault. When AIDS came along a few years later, this "blaming the victim" became even more prevalent. AIDS was, at times, presented as God's judgement on Gay people, for example.

I actually remember sometime during this early- to mid-1970s period reflecting back ten years on my mother's death from colon cancer. I recall wondering what she had repressed in her life that she died at age 48? What fears or anger or resentments was she holding in that ate away at her?

That was real, progressive, alternative thinking in 1975. Does that sound crazy in 2015? Not to some people. Every now and then you may still hear someone speak of a person who has a "cancer personality." Or when some research seems to indicate that a virus may be involved in some cancers, people don't believe it. When there is a vaccine, for example, some people discourage its use since it will "encourage" bad behavior which, of course causes cancer.

In some ways, thought, what all this can be is a difficulty accepting our individual powerlessness in the face of illness and death. To be able to blame it on some flaw or fault in our personality that we could have done something about, gives us a sense of lost power, yes, it's an awareness "too late" to do anything about it; but at least we are not powerless. We caused it. It is our fault. (I'll come back to that...)

First a bit more from Wikipedia about where this all goes:

Sontag says that the clearest and most truthful way of thinking about diseases is without recourse to metaphor. The tone of her treatise was angry and combative, and she makes sweeping claims that, while perhaps true to a first approximation, may go too far (Donoghue, 1978).

She believed that wrapping disease in metaphors discouraged, silenced, and shamed patients. Other writers have disagreed with her, saying that metaphors and other symbolic language help affected people form meaning out of their experiences (Clow, 2001).
-Link

Finding meaning in dying?

The current way of expressing that can be seen in obituaries where they will say that the person "fought a courageous battle" against the disease that took their life. I have at times reflected on that passage and realize that this still fits within the metaphor image.

My mother died of cancer before this phrase was used. As a 13-year old boy I wouldn't have said that I saw courage. I saw a disease taking her. She was powerless. And that scared the crap out of me. Was there meaning in that for her? For my Dad? For me? I don't think so. The meaning of dying is simple- "I am done. Time to move on."

Finding meaning in dying? Isn't that a little late to find meaning?

Or, as I have been asking it for about 25 years now,

What is the meaning of life if it ends in death?

That is something that we should not be ignoring at any time in our lives. The clearest and most truthful way IS, as Sontag says, to leave the metaphors aside, at least as we come to grips with our own mortality. It is to recognize that we do have citizenship in what appears to be two kingdoms. It also means seeing that these two kingdoms are not as far apart as we like them to be. It may even be that they are night and day of the same reality. Not flip sides, but part of a continuum.

As I have listened to my two friends wrestling with their end-of-life awareness I have been reminded of my own mortality. I have been reminded, as a radiologist said to one of the friends,

Life is a terminal illness.

But that is insufficient as well. While it places living and dying into the same plane, it also keeps the illness metaphor. Yet let's be real- we may not be able to speak of the unknown in any way other than metaphor. We use metaphorical language all the time to speak of God, in spite of what many fundamentalist literalists like to think.

So, then, where has that led me in these weeks as I have again come face-to-face with the human experience of this life/death citizenship? First,

• The meaning of life may be found in living in spite of dying.
• The meaning of death may be found in how we lived.
• And, I believe, it is in those "meanings" that we find the courage to continue in spite of illness or impending death.

At that point, as I always have to do, I return to the Twelve Steps of AA and the recovery world. As I learned early on from a spiritual guide, it is only when we come to the acceptance of our dying- the last step of death, dying and grief- that we have reached the First Step of Alcoholics Anonymous.

I am powerless and my life is unmanageable.

Leading me to Step Two

Do I believe there is some "high power" that can move me forward in sanity in spite of that?

If so, then there is Step Three

Let that higher power be my guide and source of power.

Everything else is how we do it. Simple? Sure.  Simplistic? No, not the way I have seen it. It is a daily walk in hope and meaning. The things I learn today at 66 are far different than the things I was learning 25 years ago when I first discovered these steps.

This is NOT, I repeat NOT, giving up. Powerlessness is NOT giving in to dying!! Notice again that it is only when we accept our powerlessness that we can seek the power to move on. It is only when we recognize the reality of what we face that we can look for the answers, decisions, directions and options that may impact who we are and what we do.

Illness itself may be the wrong metaphor in the end since it has a negative connotation. Can we accept "illness" as a given, part of our humanity? Can we accept that it will happen? In doing so can we also be ready to continue to affirm and uphold life when it does?

That may be a way that allows for more honesty, hope, and support.That is where courage comes in. That is where the courageous battle against an illness is not a denial of the illness but rather a willingness to seek support, care, treatment. It is a reminder that, yes, we all will die, but until that happens, we are still in the "kingdom" of the living!