The Politics of Pain

Today a horror unfolded before my eyes as I surfed and worked on the web. It began with a wire service news story early in the morning: Mystery Surrounds Swayze’s Health. The wires were quoting a National Enquirer story that Dirty Dancing star Patrick Swayze had been diagnosed with pancreatic cancer last month and had a mere five weeks remaining in his life. Swayze was undergoing treatments at Stanford University, the reports informed, but the cancer was most certainly spreading and threatening to take the marquee idol down.

Mind you, this was not in the Entertainment News headlines but the national headers. A bummer most certainly for Swayze’s family and Swayze himself, I thought, and I suppose for the legions of Swayze’s fans because most idolators think they own their idols and grieve their loss as deeply as if they were their own family members. I went about my business and didn’t give the Patrick Swayze story another thought – if it’s true, I thought, I mean, consider the source — until I suddenly noticed that the story, after appearing on the Associated Press wires, was popping up all over the World Wide Web like a bad cold. Everyone from People magazine online to dozens and dozens of blogs were sounding the alarms over an unverified report that the film actor was in ailing health.

Imagine being Patrick Swayze at this point: Your phone rings. You recognize the caller as a friend so you answer. “Hello?”

“Dude! You gotta get online right this minute. It’s everywhere. News about your cancer, it’s spreading all over the Web.”

Sure enough, Swayze’s handlers came out to play late in the afternoon, issuing a statement confirming that Swayze is at war with an insidious illness, he is indeed undergoing treatment, and things are not quite so grim as the Enquirer let on but the prognosis isn’t all that great either. The 55-year-old performer will continue with his curent work projects, the statement informed us, and expressed the family’s “deep appreciation (of the) outpouring of support and concern” received from the public. In other words, the Swayze family was forced to play their hand and publicly acknowledge that the rumors flying everywhere at the speed of a bullet that could kill Superman were indeed true.

What a gruesome lot we humans are. The media informs us, through rumor and innuendo at first, that a celebrity is suffering from an incurable illness. They tell us this not because they think it’s important but because we, the media consumers, have informed them that stories such as these compel us.

A friend informed me this evening that the importance of news stories like this is “that it gives those so inclined, fans and friends, the opportunity to pray” for the ill and dying public figure. I suppose she is right but it also fixes in my mind, and I’m sure in the minds of others, the vivid image of a man in horrendous pain and suffering, his mind probably tortured by thoughts of mortality and nagging questions about the concept of life after organic death, undergoing invasive medical procedures, trying to enjoy the time that he has left, time that is now being counted down by the media and the public. If I want to carry a memory of Patrick Swayze in my head it is the image of a movie star whose work I wasn’t terribly fond of but I do not value acquiring the knowledge, through the media, that the man, that any person, is suffering from a debilitating and ultimately killing disease.

Perhaps I understand suffering too well. Suffering is an unpleasant activity that can only be engaged, I am inclined to believe, as a solitary affair. Illness and pain is private and personal. To find oneself separated from, as novelist John Updike calls them, “the happy herds of the healthy” is a lonely place to be.

Updike, like myself, suffers from severe psoriasis, a disease that is not, despite common misconceptions, a dermatological illness but a flaw in the immune system. It is chronic and variable and is unique, researchers have noted, among writers and artists. As Updike observed in At War With My Skin: “What was my creativity, my relentless need to produce, but a parody of my skin’s embarrassing overproduction?” From “The Hidden Delight of Psoriasis” in the Boston Medical Journal:

In addition to The Centaur, Updike devoted the novella From the Journal of a Leper to psoriasis. This is the diary of an anonymous, bumptious potter; 70% of his body is covered in psoriasis plaques. The diary begins as he starts treatment with PUVA (Ultra Violet Light). “Falling in love with the lights,” as he calls it. The basis of the story is the erotic profile of the patient with psoriasis: “Lusty, though we are loathsome to love. Keen-sighted, though we hate to look upon ourselves.” Initially, he looks at women with desire; he loves Carlotta, his mistress, longs to hide between the breasts of a waitress, lusts after the nurse with the body of a puma, and dreams about a female fellow patient. But as his skin clears up, Carlotta—who has saintly tendencies—cools on him, once he no longer has the affliction. From his part he becomes less and less interested in women. When he lies next to her with a clear skin, he discovers blemishes and spots on her skin, which once seemed so flawless. But while she loved him throughout the previous years (in the morning she would carefully brush his flakes off her body), the pale fire of his sexual desire dulls. And there is an artistic transformation worked on him by his cure as well. He loses perfectionism as a potter. He needed the affliction to create great art in compensation.

Severe psoriasis, which I have been at war with since 2000, is the outward manifestation of one hell of an inward battle, a wrestling match between the psyche, a hyperdrive, drive, drive to create (which Freud would probably label under his Death Drive construct), and the immune system shouting “Enough already!” British writer Dennis Potter captured the suffering of the severe psoriatic brilliantly in The Singing Detective. From the BMJ:

The television series The Singing Detective—based on a scenario by Dennis Potter —has had a great impact; patients call it an important source of information and doctors even recommend it as such. The main character, Philip Marlow, is a former writer of detective stories, who has been admitted to a hospital with a severe arthritis psoriatica. Potter introduces him as follows: “Marlow is glowering morosely, crumpled into himself, and his face badly disfigured with a ragingly acute psoriasis, which looks as though boiling oil has been thrown over him.” He is an example of extreme psoriasis at its worst, “cracked, scabbed, scaled, swollen, scarlet and snowy white and boiling with pain.” His medical history is impressive: coal tar, prednisone, corticosteroids, gold injections, and methotrexate, after a positive liver biopsy. All this in a cocktail with barbiturates and antidepressants. He is in agony. His ex-wife is revolted by him because he looks like a burns victim. This gains her torments of abuse from Marlow with his blinding rage.

Potter was writing from personal experience. Unlike his Chandler-esque creation, Marlow, who eventually learns that chronic illness can often be a hiding place from psychological torments and goes on to conquer or at least control his disease, Potter eventually succumbed to liver cancer as a lethal side effect of methotrexate, often considered the drug of last resort for severe psoriatics. I’ve been on doctor-ordered methotrexate since November of ‘07. Over time, the medication could shorten my life span. The medical literature underscores this point. And while I am still wearing the scars of psoriasis and have lesions here and there and painful plaque psoriasis and psoriatic arthritis that compels me to walk with a cane, I am not suffering as I once did with high fevers and endless bouts of insomnia and pain that renders impossible simple tasks like pouring a glass of water or tying one’s own shoes (well, I still can’t do that).

Like Potter, I’ve channeled my bouts with chronic illness into fiction, most notably in the Trace stories, but words cannot convey the agony that severe psoriasis can sometimes be. And messing about with desperate drugs like methotrexate certainly makes Jack London’s The Noseless One inch closer and closer to your ear. But even though I made my illness public through my writing, as the Swayze family was compelled to do this afternoon, the pain and torment I often endure is a privately felt matter. How can it be otherwise? Why should it be otherwise? Whether we accept it or not, life is a solipsistic affair: only the self exists, or can be proved to exist. I’m speculating here, of course, that Mr. Swayze is or may be in a state of suffering. Perhaps, God willing,  he’ll endure the process without an ounce of pain. But if the contrary is true, then that’s a very private matter and not fodder for anyone’s consumption except himself and those nearest to him.