Speaking of illness

“In telling the stories of illness, we need to tell the stories of the lives within which illness is embedded.” — Andrew Solomon 1

We are guilty of turning the term cancer into a “He-who-must-not-be-named” entity. Despite the fact that several of my relatives have undergone the torment of cancer along with its treatment — my maternal grandmother (may her soul rest in peace) succumbed to it very early in life — in my family, we continue to talk about the subject in a hushed, timid tone.

Now, since the past few weeks I have been experiencing some abnormal sensations in my body and mind: shortness of breath, poor sleep, restlessness, fatigue and so on. I wonder if they are symptoms of anxiety attacks. But because, generally, mental health check-ups are yet to become a reality in my country (India), and more specifically, in my family, my attention shifted to this tiny lump on my back that I have been bearing for few years now. No change in shape or size. It has just been there. I finally showed it to my mother and with that I mentioned that I had been experiencing weird anxieties about work and stuff, so now, which of the two should I get treated first. Her immediate response was “THE LUMP, OF COURSE!” She even volunteered to accompany me to the diagnostician.

One look at the lump, our diagnostician remarked, “Oh, just a tiny sebaceous cyst2 —  ruling out anything malignant —  also adding that even if I left it there it was never going to be a big bother for me. But if I wished, I could get a surgeon to scoop it out for me. My mother, I was amused to find, was incredulous. Relieved, but her questions to the doctor were coming out incoherent and repetitive. She kept asking him to reconfirm his diagnosis, which the good doctor kept repeating in his calm, good-humoured manner.

Which brings me to these concerns: when are we going to shed the fear, shame and stigma attached to being ill and instead have frank, sensible and dignified conversations about it — equally for both physical and mental illnesses? Why are illnesses absent from our philosophical discourses? And here I hardly refer to a light and generic conversation about yoga, chakra healing, wellness and spirituality sort of a thing.; I mean we should be directly addressing the sickness — eczema, diarrhoea, leprosy, piles and fissures and what have you — with all its grotesqueness. Let us talk about our humming, throbbing, festering, bleeding, smelling, oozing bodies suffering all manner of diseases, consider our bodies and brains at their broken, weakest, most vulnerable states. And not just with our healthcare providers. At public forums, on social media and, heck, at Tinder dates, too! Let us talk openly about our bodies of that we are taught to feel ashamed of, even when it is otherwise functioning well. Where does it hurt? What is our mind doing when our body is writhing in pain? Where has our spirit gone? are aspects we need to inquire of ourselves and of one another. Sophisticated conversations about illnesses, one may note, are absent even from our schools, colleges and workplaces. Surely, they are missing in politics, religion, poetry, music, art, dance and theatre, too. Why not push ourselves, as much as our bodies permit, to continue to make art even, and especially, during the phases of illness?

I discovered that decades ago, in an essay published under the title On Being Ill (1926), the great Virginia Woolf had raised similar questions. She posited in her pithy and wonderful essay that often illnesses facilitate a special kind of eloquence in us. A sick person tend to cut loose, holding out in a state of unpretentiousness, their words stream out unfiltered and raw. Such a performance of the mind very few other mental states can match.

Woolf, ever the experimenter of language and form, winsomely claims that illnesses compel us to invent language that often employ expressions that are…

…more primitive, more sensual, more obscene, but a new hierarchy of the passions. There is, let us confess it (and illness is the great confessional), a childish outspokenness in illness; things are said, truths blurted out, which the cautious respectability of health conceals.3

When using language to define shape-shifting diseases, notably cancer, the dramatis personae in our fantasies about the illness should also be changed to fit the part. To a similar effect, Woolf writes,

…love must be deposed in favour of a temperature of 104; jealousy give place to the pangs of sciatica; sleeplessness play the part of villain, and the hero become a white liquid with a sweet taste — that mighty Prince with the moths’ eyes and the feathered feet, one of whose names is Chloral.4

Since there are as many experiences of a particular illness as there are people experiencing it in this richly diverse world, some may view illnesses as their personal teacher, which is a fine way of dealing with our adversities. It strips down the excesses from our lives and sobers us up, forcing us to focus on what is truly essential.5

More crucially, as the very wise Andrew Solomon notes in an article: “Illness has to be understood as both metaphor and reality” I am compelled to note that open, direct, clear communication, with a robust and imaginative vocabulary in describing our illnesses, can enliven conversations, aid us and our healthcare providers to be more attentive to our sufferings, and thus save our lives.6

Solomon writes:

We are embodied, but our minds order the brokenness around us by imposing vocabulary on it. In fact, there is some evidence that people who can speak more fluently receive better medical care; patients deprived of language are often subject to abuse.7

If language plays a huge role in the healing process, much of the healing starts, it can be concluded, in the form of effective storytelling on the part of the patient as well as the doctor, helping us negotiate the rigorous and often chaotic course of the treatment, remedying both mental and physical illnesses partly by surgery and partly by discourse.8

References:

  1. https://www.theguardian.com/books/2016/apr/22/literature-about-medicine-may-be-all-that-can-save-us
  2. http://www.webmd.com/skin-problems-and-treatments/guide/epidermoid-sebaceous-cysts#1
  3. “On Being Ill”, Virginia Woolf, The Complete Works of Virginia Woolf, Delphi Classics 2014, Version 8
  4. “On Being Ill”, Virginia Woolf, The Complete Works of Virginia Woolf, Delphi Classics 2014, Version 8
  5. https://www.lionsroar.com/illness-the-way-beyond-suffering/
  6. https://www.theguardian.com/books/2016/apr/22/literature-about-medicine-may-be-all-that-can-save-us
  7. https://www.theguardian.com/books/2016/apr/22/literature-about-medicine-may-be-all-that-can-save-us
  8. https://www.theguardian.com/books/2016/apr/22/literature-about-medicine-may-be-all-that-can-save-us
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