The Heartbreak And Uncertain Reality Of “Brain Dead”
The heartbreak associated with “brain dead” plays out quietly in most cases. But when it periodically plays out in public (“A Brain Is Dead, a Heart Beats On” — NY Times), the tragedy grips us with all the uncertainty and fear of death itself.
The drama peaks in our hearts when we remind ourselves that once upon a not-too-distant time, death was determined when a person stopped breathing. Then it was declared when the heart stopped. And more recently, it has come down to reading brain wave data.
But even that technological step remains tentative with the scientific reality that we truly can’t yet determine who is going to emerge from a coma.
Heartbreak lives in that uncertainty and thwarts closure.
My novel, Perfect Killer, worked extensively with this in the context of a fact-based thriller. Sandwiched in among the conspiracies and actions, the characters worked with the meanings of consciousness, free will, intentionality and the search for the boundary between sentient and not … and how that affects our ability to choose right from wrong, good from evil.
And what consciousness means and where it comes from.
The main character in Perfect Killer, Brad Stone is a physician and neurobiology professor at UCLA whose specialty is the study of consciousness. At the top of his priority list are the unknowns involved with his wife, Camilla, who has been in a coma for years.
Here he ponders part of this as he falls asleep:
It struck me then that we can never be who we are because the actual moment of being in the present is an infinitely small moment sandwiched between the constantly shifting memories of who we have been and the thoughts and fantasies of who we will be.
Consciousness perceives events in the world about a fifth of a second after they have actually happened. That means any time we think of the present, we are already looking at the past. The reality we perceive never coincides with the reality that exists.
Who we are is never the same from instant to instant because the present we perceive is continually reshaped by the past. Thus our hopes and dreams for the future propel us through an illusory present to a fourth state of time: our state of being that is simultaneously neither past nor present nor future and yet all of those combined. It had something to do with space-time, which made me wonder if that had anything to do with the soul and where Camilla’s mind lived.
Camilla had no future in this world; no one had ever recovered from her level of profound brain injuries. While she occupied a physical presence in the present that I perceived, her brain showed no indication of consciousness or directed neurological activity above the brain stem, which indicated she lacked a present of her own.
I often worried if an internal life played in her head beyond our scientific ability to detect it. Physicians not so long ago lacked the instruments to detect brain waves, which made me realize that merely because we failed to detect something did not prove its absence.
I fell deeply asleep then, wondering what this meant. And whether it meant any damn thing at all.
Later in the book, Stone visits Camilla’s care facility with Dr, Fowler, her physician.
We entered the door leading into the suite’s sitting room. The Pacific Ocean glowed through the broad windows, showing a top-heavy container ship on the distant horizon heading toward Point Conception. Closer in, I made out the brilliant geometry of a red-and-while sailboat spinnaker and, nearer still, a squad of surfers astride their boards waiting for a good wave.
I followed Flowers to the door leading to Camilla’s room. He opened the door, then turned back to me.
“I’m afraid she also looks worse than last week.” He turned and I followed him into the room.
As always, Camilla’s bed was inclined toward the window. We detected no cognitive control over her eyes, but knowing how much she loved the ocean, I wanted to make sure, if there was any spark in her brain connecting her to this world, she could spend her time as pleasantly as possible.
Research showed we had no way of proving she lacked consciousness, only that we could not detect it.
So I paid for the best DVDs and music and for people to come and read to her. I don’t know whether it did any good for her, but it did a little for me.
When I approached the bed, my heart fell. Camilla had shrunk from the woman I’d visited less than a week before. Her skin trended toward gray and I became acutely aware of the additional IV rack with the antibiotic drip.
“I’m sorry,” Flowers said as he read my face.
I moved to Camilla’s side and held a cool, dry hand so inordinately small in mine. Behind me, the door clicked discreetly as Flowers quietly excused himself.
Camilla’s eyes held steady at the ocean as I held her hand. Then careful not to disturb the network of tubes and monitor leads, I put my head near hers and looked out the window, trying to see what she saw.
I recalled a time when our thoughts and emotions and imaginations synchronized with a rare coherence that kept our two lives utterly in step. I looked away from the ocean and into her eyes. They did not change, did not find my own gaze, did not look away from a distant vision I knew extended beyond any horizon visible to me.
My heart told me she was not aware of me that she was no longer there, that she was no longer Camilla.
But I wasn’t sure.
I bent over and kissed her on the cheek.
“I love you,” I whispered. “I love you.”
Stone returns to these thoughts as he deals with the thriller he has been thrust into.
The Perfect Killer web site elaborates more about this, as well as why I had to wait for my mother to die before I wrote it, why I wrote it, and how much of Stone’s life and family mirrors my own.