Deserving love

I recently rediscovered a quote from English writer Zadie Smith’s debut novel White Teeth, whose tone is kindred to the Singer’s reflections on love and what “good” people deserve.

Smith’s sprawling multicultural novel follows two families — British Archie and his Jamaican-born wife Clara, their daughter Irie, and the Bengali Iqbals, Samad, Alsana, and English-Indian twins Millat and Magid — from the end of World War II through the 1970s when Archie meets the much-younger Clara to the present where the second generation struggles to make sense of their inheritance. Smith smashes real historical events into multiple points of view, time periods, and throws in bits of social theory and intertextuality, all to illustrate the absurdity of a world driven by chance but inhabited by people who believe that they can control what happens in their lives.

In the novel, Irie loses her virginity to Millat, with whom she is in love, but is rebuffed by him. In anger, Irie sets out to sleep with his twin, and Smith describes the scene:

“It’s a funny thing about the modern world. You hear girls in the toilets of clubs saying, ‘Yeah, he fucked off and left me. He didn’t love me. He just couldn’t deal with love. He was too fucked up to know how to love me.’ Now, how did that happen? What was it about this unlovable century that convinced us we were, despite everything, eminently lovable as a people, as a species? What made us think that anyone who fails to love us is damaged, lacking, malfunctioning in some way? And particularly if they replace us with a god, or a weeping madonna, or the face of Christ in a ciabatta roll—then we call them crazy. Deluded. Regressive. We are so convinced of the goodness of ourselves, and the goodness of our love, we cannot bear to believe that there might be something more worthy of love than us, more worthy of worship. Greeting cards routinely tell us everybody deserves love. No. Everybody deserves clean water. Not everybody deserves love all the time.”

Horrible things happen every day — Zadie Smith might as well be echoing the singer’s friend Beth, whose words of comfort when the singer loses her father say that no one deserves immunity from anything. Life just happens.

Smith’s description of the value attached to love also seems to capture the journey of the singer as an agent in her own happiness; the singer tells us that after dating a series of alcoholics who insisted that they weren’t her boyfriend, she met Henry, whose defining quality is that he is nice to her. The singer reveals anxiety about whether or not she “deserves” a guy so great — she notes that her family is almost offensively impressed at her catch and structurally, her “perfect” relationship with Henry leads us to the story of overhearing her mother imply she loves the singer’s more popular and successful sister better. The song paired with the story contains an image of a sleeping Henry not supporting his girlfriend, though she insists that “still hav[ing] you” makes up in part for the hurt her mother inflicted. Our music director Steve made the brilliant catch that in “I Still Have You,” the singer uses an image of sitting up in bed in a panic, which later happens to her dying father. Later, the singer also uses imagery of a hospital to describe her break up with Henry — she got clingy, and Henry had to “pull the plug.”

In these instances, We’re Gonna Die places our ability to inspire love and be lovable as an indication of the good things we deserve, a public marker than we are good people who don’t deserve a lonely, premature, scary death like the singer’s father experienced. The end of the piece undercuts that, however. We may find love, or we may not. We will die anyway. Zadie Smith, too, refuses to give us a tidy ending. White Teeth ends by describing several endgames, some happy, some clinical, some ambiguous. None necessarily true.

She concludes in words that echo the singer’s description of comfort: “But surely to tell these tall tales and others like them would be to speed the myth, the wicked lie, that thepast is always tense and the future, perfect … it’s not like that. It’s never been like that.”

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Zadie Smith 

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Medical Ethics, Part 1

Now that we’ve had the chance to explore We’re Gonna Die in detail via tablework, we’re going to start using this blog space to address a few big picture themes and questions. First up: medical ethics. We’ll be engaging this topic in several parts.

The Singer in We’re Gonna Die tells a story of how her father enrolled in a medical trial for a new cancer treatment, the hope this enrollment sparked, and the devastation of not receiving the treatment in time.

There’s much to be explored in the realm of medical trials, but the purview of the Singer’s experience is limited to that of a family member, trying to care for a loved one in pain, and working to understand what seems to be an utterly perverse turn of events: a drug that can help that is being withheld because the parameters of the trial must be upheld.

The question she and her family ask: how is it possible that the prospect of saving a life is less important than the rules of the trial?

The question the prompts for us: How do medical codes of ethics guide doctors and participants in these cases?

The journal Current Oncology sought to address this question, especially when it comes to the “informed consent” of trial participants.

Informed consent is arguably the most important ethical dimension of research on human subjects, and yet it is arguably the most difficult to truly achieve 10,11. Fully informed consent has three fundamental components 12:

  • Adequate disclosure of information
  • Full patient capacity to comprehend the information
  • Voluntariness or freedom of the patient to make a decision

For a [randomized clinical trial] to be justified, a state of clinical uncertainty about the relative merits of a trial’s arms—that is, the groups or methods being compared—must exist. This requirement alone is a difficult concept for most patients to grasp, and it is a sufficiently nuanced and sophisticated concept that even researchers exhibit inconsistency in grasping this very fundamental premise behind clinical research. A priori, a patient is entirely unable to know in advance whether participation in a study might be of personal benefit. The clinical investigator must be completely honest about presenting the experimental nature of the treatment being offered and must avoid propagating the widespread therapeutic misconception in which the patient believes that an offer of an opportunity to access a beneficial therapy is being extended.

Furthermore, clinical investigators cannot possibly predict every foreseeable complication of an experimental therapy, because previously unknown and unencountered complications can arise in the course of clinical research.

This next point seems incredibly important (boldface emphasis mine):

Full capacity is arguably impaired in most patients being confronted with the daunting task of trying to digest all the information concerning a complex trial and making a decision that may have an impact on their quality of life or very survival. Voluntariness may also be adversely affected by a myriad of forces. In the final analysis, the most important component in clinical decision-making and the consent process for many patients may simply be their trust in the clinical investigator.

Is the problem of impaired consent present for the Singer’s father? We can’t know for sure, but I’m interested in how consent connected to the idea of hope — perhaps, even, false hope.

Is false hope a necessary byproduct of participation in such a trial? And, like the other types of suffering explored in We’re Gonna Die, is this an inevitability of life itself?

More on Medical Ethics in part 2, coming soon.

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