Ethical Knots: Life and Death Edition

(masterful piece and this is an emotional and personal recommend – promoted by pfiore8)

Being the first, perhaps, in an occasional series on various ethical tight spots. Together in the threads may we untangle and tangle the most intricate problems. Perhaps this will contribute, however obliquely, to The Manifesto Project.

What should I do?

If it were always absolutely clear what it is that we should do, there would be no need for “ethics” with various modes of making just and reasoned decisions.

Ethics and complication, ethics and uncertainty, ethics and danger, ethics and risk, they travel together. Called upon to exercise your ethical judgement, when there is a true test, it is because you find yourself in an impossible situtation, where none of the outcomes clearly announces itself as the right one.

The instant of decision is madness.
– Søren Kierkegaard

While we might like to think that we come to the most serious decisions rationally, Kierkegaard, and Jacques Derrida after him, touch on the haunting fact of every decision: when you finally decide, you will have decided on the basis of something other than just reason.

If the moment of decision-making is a moment of madness, it is because all of your calculations and balance-sheets leave you utterly alone when it is finally time to just say “yes” or “no.”

My mother was sick, very sick. She had pancreatic cancer and kidney failure.

One night, not too long after her surgery, and several rounds into her chemo, we almost lost her. In the ER, the doctors had that look. This was the last time I saw my mother 100% there. She was throwing up blood, and very frightened. I was too. I was trying to help her, and she grabbed my hand and said, “This is very bad. This has never happened to me before.”  The GI doctor came and said they had to scope her right away, “No,” she said, “I’m frightened.” She squeezed my hand. They scoped her.

Then everything fell away. I remember the overly bright lights, the clattering of metal, doctors running, they needed blood desperately, where was it … a nurse finally came literally sprinting through the ER with the blood … was it in time? Yes. Yes, just barely.

My mother ended up in the ICU. The doctors were announcing imminent death. But my mother, stubborn woman that she was, wouldn’t die. She came off the ventilator. She was in the hospital for months. She lost her hearing, her speech, her mind, her appetite. She was kept alive by feeding-tube. Every now and then there was a snippet of mom, or more, but mostly she was just hallucinating. I constantly held her hand and looked at her and often intoned in a whisper, a prayer, beseeching her, “Come back to me, mom, come back, come back, come back.”

And she did. She never walked again. She couldn’t do barely anything for herself, except turn in bed, and then, not always. We took care of her at home, in a hospital bed set up in the living room, so she could be at the center of things, as she always had been. It was difficult taking her to dialysis three times a week, but it was necessary.

She regained her hearing, her speech, and a lot of her mind. We had meaningful, if simple conversations. She smiled. She laughed. She beamed when she saw and hugged her nephews.

She wanted to take showers, and I figured out how to do that for her. Not easy! But she enjoyed it so very much … both of us in there, she sitting on a stool, me propping her up, bathing her, enjoying the hot, soothing water. She never wanted to get out of there, and we’d be two prunes!

She even started eating again a bit (although still on the feeding tube), and it was our true pleasure and honor to prepare whatever she asked for, even if it was only for her to enjoy a bite or two.

When my father and I and SO looked at her, she was there, even if like a video de-interlacing, or a computer glitching. We saw her, there. But she was clearly very very very very sick. Dying. Suffering at times. Once, in an interminable ER wait, she grabbed my hand and said to me: “I am the most miserable person in the world. I can’t even get into my grave properly.” A knife straight into my heart couldn’t have been more painful. What could I do for her?

She had a living will. My father was the medical proxy. My brother and I were also listed as proxies. These pieces of paper do not help. My father didn’t want to make any decisions, fantasizing that my mother was still a fully cognizant subject. My brother extracted himself, thinking that she wasn’t a subject at all.

The doctors, every last one, just suggested we stop dialysis. How long would mom live without it? They couldn’t say, a couple of weeks, maybe. A very unpleasant death for both mom and the survivors. Mom didn’t always understand what dialysis was. At times she hated it. Other times, I could distract her, we’d go elsewhere in her mind.

My father would have kept my mother alive to the very last. He would have been like Terri Schiavo’s parents. At the other end of the spectrum was my brother, who ever since that near-death in the ER, had thought of my mother as already gone.

… and then there was me. I am not only neurotic by nature but a deconstructive literary theorist by training. Decision-making does not come easily to me.

Here she is
so small now
my mother
dying, alive.

Through these months and almost years, everyone was looking at me: What are you going to do? The doctors would look at me, always trying to get us to sign a DNR (dad didn’t want to) and get mom off dialysis; my brother would look at me as if I were insane, when I would tell the doctors that she was still doing OK, that just the other day, we went to the park, and she smiled to have the sun on her face–or that she asked for “pad thai” and we enjoyed a couple of bites of it, or that she had come up with a new nick-name for her two-year old nephew, chunky thing, “Bumpers”–all of these were mom, in life, living.

The doctors and my brother looked at me.

My father looked at me, to always defend mom.

And mom, she looked at me, she always looked at me. I don’t always know what she saw. But do we ever know what the other one sees when gazing at us.

Looking at me
asking-or absent-
what does she see?

In French, regarder means to look at. When someone looks at me, he or she me regarde. But this use of the verb also has a figural sense. When something or someone me regarde, it can mean not only that he, she, it looks at me, but that the someone or something concerns me, is my concern, my affair, my responsibility. The French language ties together the gaze and ethics. The most influential writer in my life, philosopher Emmanuel Levinas, begins knotting his ethical philosophy precisely around this commanding gaze of the other.

Everyone was looking at me … What should I do?

I decided that I could not withhold dialysis. Perhaps this was the wrong decision. I don’t know. But I decided that we would be with her, tending the flame, honoring and loving and supporting she who was still there.

This was more than an instant of madness. It was months, more than a year and a half of madness. I had to recheck my decision constantly, daily, hourly.

here she is now
my mother
advancing, in retreat

I don’t know if I made the right decision. I do know that we enjoyed many more moments together. And that we shared the most profound intimacies and expressions of love.

fragment of text
wandering melody
the obscured grace of
love in despair

R.I.P., dear mom, Estrella, star, my star.

In French, one word for madness is délire. This is a word I love. Délire, delirium. But lire in French means reading–it is the verb to read–and you can imagine the word délire to mean unreading, or to unread. This happy accident of a pun reveals something else that I think is crucial about ethics, and the impossibility that attends every true ethical tight-spot. Submitting to the madness–the délire–of a decision–also expresses the imperative to unread. To unread all of the conventional narratives, and tidy set stories, to expose yourself to the singularity of the situation that comes with no rule book or manual.

What was the hardest thing you ever had to decide? It may not literally have been a matter of life and death, but it always feels that way when we find ourselves bound by the impossibility of a situation that truly requires ethical vigilance.