Terminal Lucidity, Brain Injury, and the Self

Personal Perspective: Brain injury may obscure the self but does not erase it.

Reviewed by Gary Drevitch

“…the Socrates who is now conversing and arranging the details of his argument is really I; [Crito] thinks I am the one whom he will presently see as a corpse…though I have been saying at great length that after I drink the poison I shall no longer be with you, but shall go away to the joys of the blessed.” —Socrates, as quoted by Alexander Batthyány in Threshold.

Modern thinkers eschew Socrates’ idea of the soul. They assume we know enough about the brain to assert that the mind is the brain.

Batthyány questions, "If the integrity of my personhood is so dependent on the integrity of my brain function, does this not also clearly imply that myself, my mind, my personality are no more than products of my brain?”

This century, researchers began studying a phenomenon that contradicts the idea that the mind and brain are the same. Terminal lucidity is the sudden, unexpected return of mental clarity in the hours or days before death in people living with severe dementia, Alzheimers, traumatic brain injury, or other neurological disorders that compromise cognitive function for years. Paradoxical lucidity occurs further away from death. Some nurses call it "the rally"; others, "the last hurrah." In other countries, traditional names exist for it.

Terminal lucidity challenges orthodoxy by asking how a person with severe and prolonged brain damage—unable to talk, connect, remember, or initiate action—can suddenly recognize people, converse with them, and be the self they were before illness?

Batthyány asserts that terminal lucidity reveals the self remains alive behind the façade that dementia creates. Yet others doubt it’s so.

Jordan Kinard wrote in Scientific American that research into the dying process in four cardiac arrest patients and animal studies observed a surge in gamma-brainwave activity. Researchers hypothesize that this mechanism may explain terminal lucidity. But you cannot equate gamma-burst in an acute condition to lucidity after prolonged brain damage: Neurons cannot suddenly regenerate and reconnect. Even if acute loss of oxygen stimulates the brain to increase gamma-brainwave activity, brainwaves cannot suddenly propagate normally through longstanding missing neurons and disconnected networks to allow a person to communicate with the outside world in real time. Physics applies to the brain.

Gamma brainwaves are associated with the neurotransmitter gamma-aminobutyric acid (GABA), which pregabalin and gabapentin increase. In July 2012, after being thrown out of a trial for controlled-release pregabalin, I started gamma brainwave training. I hoped for similar improvements to the pregabalin but permanent, without side effects. I noticed right away cleared vision and a good mood that seemed to power my brain. But I had a concentration headache. Weekly gamma brainwave training dramatically increased my intellectual capacity over that summer. The personality effect was profound. I felt coherent, like the three fractured pieces of me came together and made me whole again.

In 2015, I tweeted, “Personality is not consciousness. Awareness is not dependent on personality.”

My personality changed with my brain injury. For years, the question “Who am I?” haunted me. My inner experience was my mind sitting in a cave, looking out at the world where everyone else existed. I could not exit the cave nor communicate with anyone outside it. Inside my grey cave, a stooped man swept the floor and I sat at the far opposite wall of the opening. Flowers, grasses, and life in myriad colors waved to each other outside.

I experienced my mind trapped inside my brain. My injured brain could not express my self, only fragments like disconnected glass shards from a lost sculpture.

Only after gamma brainwave training was I able to approach the opening and then exit the cave. Then further, continuing neurostimulation treatments reassembled the shards.

As my brain heals, and I return to having my identity expressed like that of non-brain injured people, I lose that knowledge of what it’s like to have mind and brain separated.

During terminal lucidity, it’s like the self blasts through broken neural networks, sweeps through the toxic waste impeding neuronal activity, hops over eaten-up synapses, and bypasses holes and dead parts to express itself for a few minutes or hours or perhaps days, just before death.

How can it do that?

Gamma brainwave training integrated my mind with my healing brain, as neural networks reconnected and neurons either regrew or were replaced, allowing my self to re-emerge, but it did that over months of training and years of audiovisual entrainment. Although the initial rapid improvement stunned everyone, it wasn’t instantaneous, like terminal lucidity is. My treatments restored brain activity. According to Batthyány, autopsies show that the severe brain damage in people who experienced terminal lucidity did not heal. So what mechanism allowed the self to bypass the broken brain?

Research and philosophy of mind may eventually answer this question. As philosopher David Chalmers has said, consciousness is the hard problem.

Meanwhile, terminal lucidity teaches family, friends, health care workers, doctors, and scientists a life-altering lesson. Witnesses tell researchers "they had an encounter with the…very soul or inner self that for so long had been ‘hidden’ or rendered inaccessible by dementia or a similarly devastating brain disorder.”

Behind the façade of disappeared personality, or one replaced by an “unpleasant one,” hidden in the depths of brain injury, the self remains. The self hears and sees you, remembers how you’ve treated them when you believed they were gone. With treatment advances, clinics can restore the self to the outside world after brain injury.

“Only the eye of charity, of love and affection…is able to reveal the unseen aspects of the human being: her person, her self.” How then will you repair the damage you rendered when you believed the self was gone and you judged and abandoned the person?

Unlike adults who’d known me before, children instinctively knew I was not my brain injury. And the elderly are not their dementia. Our selves remain. How will your thoughts, words, and deeds reveal or eliminate the hidden, remaining self of your loved one or client?

Copyright ©2024 Shireen Anne Jeejeebhoy