It only took one viewing of Bohemian Rhapsody for me to be instantly obsessed with Queen. Their heyday was before my time, but I distinctly remember listening to “Bohemian Rhapsody” on the bus in grade school, the cassette tape locked in my yellow walkman. But the movie has generated a Queen renaissance for me, and that – of course – means reading up on it. So, I got a biography of Freddie Mercury.
Pieces of my world started to connect. In the biography, a quote showed up from Susan Sontag’s book Illness as Metaphor and AIDS and Its Metaphors. I turned to my phone; clicked on my Amazon app; and the book showed up two days later.
Meanwhile, I’m listening to The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee on Audible. Jeff listened to it years ago, and I remember having conversations with him about how fascinating it was. As I listen to the book, I think about Jeff, and what he might have been thinking as he listened to it, and how he had no idea that he was listening to a biography of what would – in a mere few years – take up residence in his bile duct, spread to his lymph nodes, and eventually settle in his peritoneum, shooting his CA 19-9 numbers to over 91,000.
And then, because I can’t help myself, I’m watching The Emperor of All Maladies, which is also a PBS miniseries. I need a part-time job to follow up on all of the curiosities I have.
The thing I keep coming back to is this: humans know more than we did, and we are gaining knowledge at exponential rates… but we simply don’t know as much as we think we do.
Mercury’s biography, of course, discusses AIDS. I have vague memories of the late 80s, when it was considered a ‘gay disease’ and how people were terrified of it. I grew up near Indianapolis, and Ryan White – the boy who contracted AIDS from a blood transfusion and became a national figure – was from Kokomo, Indiana… only about an hour away from me, and I remember when he died. We know more than we did then. We have more treatments than we did then. But for the patients who had AIDS in those years, life was not like it is now.
Susan Sontag explains that the same was true of cancer. Illness as Metaphor was published in 1977, and explains the plight of the cancer patient to know her true condition: “All this lying to and by cancer patients is a measure of how much harder it has become in advanced industrial societies to come to terms with death. As death is now an offensively meaningless event, so that disease widely considered a synonym for death is experienced as something to hide. The policy of equivocating about the nature of their disease with cancer patients reflects the conviction that dying people are best spared the news that they are dying, and that the good death is the sudden one, best of all if it happens while we’re unconscious or asleep. Yet the modern denial of death does not explain the extent of the lying and the wish to be lied to; it does not touch the deepest dread. Someone who has had a coronary is at least as likely to die of another one within a few years as someone with cancer is likely to die soon from cancer. But no one thinks of concealing the truth from a cardiac patient: there is nothing shameful about a heart attack. Cancer patients are lied to, not just because the disease is (or is thought to be) a death sentence, but because it is felt to be obscene — in the original meaning of that word: ill-omened, abominable, repugnant to the senses.”
I can barely fathom a world where cancer is considered shameful or something to be embarrassed of. But I can absolutely relate to the idea of it being “ill-omened” and “abominable” and “repugnant to the senses.” When Jeff told me he had cancer, I screamed. I cried the whole day, and when Jeff said, “I’m not dying, Jess,” I so badly wanted to believe him. But my brain processed “cancer = death.” And death – especially Jeff’s – was abominable. What Jeff endured was absolutely repugnant to the senses — seeing him grimace in pain; feeling his emaciated skin and protruding bones; hearing his bile and ascites as it drained into glass measuring cups.
Sontag’s observations ring true with what I am also listening to from Mukherjee. Once considered shameful, cancer patients hid their symptoms from the world, for lots of reasons — among them, a fear of bringing bad social mojo to their family. Mukherjee describes how Mary Lasker, a socialite and philanthropist, worked with her husband to re-brand cancer and the conversations surrounding it. Hard to beat a good public relations campaign.
For cancer patients, we know more than we used to. We have more treatments than we used to. But – as the title of Mukherjee’s biography describes – cancer is still the “emperor of all maladies.”
Underpinning Mercury’s biography, Sontag’s observations, and Mukherjee’s history is the axiom that things change, and often in ways that we can’t or don’t always control or predict. Biology does its thing, and we struggle to understand it. Beliefs once unquestioned – such the geocentric universe or cancer being caused by ‘black bile’ – are now laughable. Not only do our basic understandings and principles change, but so do the perceptions of those beliefs. Knowledge does not exist in a vacuum of public opinion.
So I can’t help but wonder what will be laughable in 10 years… 20 years… 50 years. What will my children accept as absolute, that I approach with skepticism?
And is it really too far of a stretch to extend that same kind of humility — the understanding that our knowledge is limited, and there are plenty of things we do not or cannot understand — to things like death and religion? If we don’t even fully understand cancer, something that we can observe under a microscope and label and discuss and experiment with… then what of the things we cannot see or label?
I’m reminded of an activity I used to do with my AP Language students. To teach rhetorical situation and exigence, we’d use the following letters from a sixth-grade girl and Albert Einstein.
The Riverside Church
January 19, 1936
My dear Dr. Einstein,
We have brought up the question: Do scientists pray? in our Sunday school class. It began by asking whether we could believe in both science and religion. We are writing to scientists and other important men, to try and have our own question answered.
We will feel greatly honored if you will answer our question: Do scientists pray, and what do they pray for?
We are in the sixth grade, Miss Ellis’s class.
Then Einstein’s response:
January 24, 1936
I will attempt to reply to your question as simply as I can. Here is my answer:
Scientists believe that every occurrence, including the affairs of human beings, is due to the laws of nature. Therefore a scientist cannot be inclined to believe that the course of events can be influenced by prayer, that is, by a supernaturally manifested wish.
However, we must concede that our actual knowledge of these forces is imperfect, so that in the end the belief in the existence of a final, ultimate spirit rests on a kind of faith. Such belief remains widespread even with the current achievements in science.
But also, everyone who is seriously involved in the pursuit of science becomes convinced that some spirit is manifest in the laws of the universe, one that is vastly superior to that of man. In this way the pursuit of science leads to a religious feeling of a special sort, which is surely quite different from the religiosity of someone more naive.
With cordial greetings,
your A. Einstein
As is true of most good inquiries, I have more questions than I have answers. I took a plunge into what other scientists – Galileo, Sagan, deGrasse Tyson – had to say about this.
But I have to draw the line somewhere. So I’m back to reading Mercury’s biography, which is a curious pairing with Sontag and Mukherjee, but which nonetheless is the story of a human being, who died just like we all eventually will, and whose story has meaning, just like all of ours do.
For my part, Jeff is still a part of my story. I half expect him to walk through doors he’s walked through before. When I am somewhere that Jeff and I visited before, I stare at the table where we ate; or the bar where we bought a drink; or a couch that we sat on. If I try hard enough, I can sometimes remember what we were wearing or what we talked about. I close my eyes and visualize him sitting there, and remember his laugh or his crow’s feet or the way his hair product smelled right after he put it on. My mind races across decades and marvels at the trickery of time, and how it speeds up, slows down, and has morphed my life without my permission. One day, I woke up, and I had gone to college; married a man; bought a house; and had two children. I sometimes wonder how the hell I got here.
But I like my life.
Ultimately, I will be consumed by some disease or die in a horrible accident. I may fall asleep and never wake up. I may have a heart attack. Maybe a stroke. But the irony of it all is that death — the thing that I will never fully understand — is indeed the only reason why my life — the only thing I have ever tangibly known — has any meaning at all.