Illness as Art

Strong Voice in a Weak Body

It is  as if this body has been taken over by a spirit, evil  in its intent and showing up with no warning.   It is made clear it will not be leaving any time soon.   The sad fact is the message actually is not leaving ever.  Welcome to the land of the chronically ill.

            I am sick and for decades have wondered if suffering carries with it a camouflaged  meaning.  Suffering is a word I generally hesitate to use.  MS brings on a numbness that is the opposite of pain.  Colon cancer introduced me to powerful pain medications that blunted sensation.  Only my spirit suffers.

            Psychic pain fills in the gaps.   Narcotics only prolong the hurt.  Chronic illness puzzles the chronically healthy.  They do not allow themselves to know us.  Intimacy feels threatening.  Many would rather look away.  Given that the CDC informs us that sixty percent of adult Americans live with at least one chronic condition, we are left with  realities surrounded with barbed wire, blocking the exits.

            Melissa Febos writes in the New York Times about “the inherent superiority of a life of full physical ability in her essay, What if the Pain Never Ends.  “I did not invent this belief.  Our culture is saturated with it.”   

            I have traveled with a cane and walker and occasional wheelchair for a 

long time. The stares are ceaseless, the discomfort palpable.  We are lesser beings, released from our cages for limited outdoor time.  When I am in the 

wheel chair, that device is all some people see.  People address my wife to learn if I am thirsty or need to use a men’s room.  Apparently I cannot speak.  It can be humiliating.

            Susan Sontag knew that k nd of p ain.  She wrote in Illness as Metaphor in 1978, that “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”

            We clearly see the shortcomings of others.  Americans celebrate beauty and physical perfection. With sickness, we have a low threshold of discomfort.  We avert our eyes when facing what we do not want to see.  I believe we do not wish to be mean, only to protect our emotional fragility.

            Others summon internal strength and regard illness as an awakening, a journey on a virgin highway.  In her essay, On Being Ill,Virginia Wolf wondered why sickness has no place in literature. “Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul.”

            It took T.S. Elliot to publish that essay in 1926.  There seemed to be an implicit reluctance to tackle illness on the printed page.  Then COVID-19 descended on humanity.  There was nowhere to hide. Social isolation became its own illness because loneliness now was a fact of life  Nicholas Kristoff of the New York Times visited Great Britain where he met with the Minister  for loneliness, who spoke of the dangers isolation wrecks on us.

“It touches almost every one of us at some point,” Baroness Barran, the current minister for loneliness, told Kristoff.  “It can lead to very serious health consequences for the individual and leads to erosion of our society, where people become isolated and disconnected.”

The statistics of death are breathtaking.  More than half a million of us in the U.S. have perished from the COVID-19  virus.  I dare say Virginia Wolf and Susan Sontag would be out of their element.  There is no state of wonder that would mean anything to anyone to blunt the horror of the moment.  There is no meaning but to know once again that life is not fair.