Tell Me I'm Not Crazy


I swear I saw it with my own eyes!

In Rearranged, my memoir about surviving bone cancer in my face, I describe my experience of ICU psychosis or “postoperative delirium”— a potentially catastrophic cluster of psychiatric symptoms during a period of disorientation while hospitalized.


In my hospital bed I imagined all kinds of things that could not possibly have happened—a suicide jumper in a hospital johnnie, a high fashion photo shoot outside my window on the fourteenth floor, a conspiracy among my attendants to deny me my right to the hospital's bridal suite—which I nevertheless experienced as unassailable reality.


Fortunately my delusions were benign, but this is not always so. Biology research scientist Daniel DeMarco describes protracted and threatening visitations by a mysterious Mr. X. Others experience severed heads, humiliation, death threats, or like British journalist Eugene Costello, a violent international kidnapping.


First observed by Hippocrates (who called it by sixteen different names, none of them "delirium"), postoperative delirium has remained stubbornly elusive to medical science, though it is now acknowledged to be both dangerous and expensive. The American Delirium Society estimates ICU psychosis affects as many as 7 million hospitalized patients in the U.S. every year, and costs as much as $150 billion in extended hospital stays and health complications. But research is still in its infancy.


London authority on postoperative delirium Dr. Valerie Page frames postoperative delirium as a physiological phenomenon, a kind of bodily PTSD, after the physical trauma of major surgery—rather than a drug-related psychiatric event. Nor does she believe these altered experiences are psychologically or spiritually revealing:


“People talk about seeing a white light, but that’s because as your optic nerve loses blood, a white light is what you see,” she explains. “These are simply physical neurological manifestations of the brain malfunctioning due to transmitters, blood flow, and inflammation.”


When I was corrected in my delusions, I retained a feeling of straining to remember a dream hanging perversely on the fringe of my thoughts, just out of range. I knew that my brain knew something, but it hadn't yet let me in on it. More fascinated than frightened by my disorientation, I felt myself observing my own mind’s fitful swim up from the depths of a week-long coma to full consciousness.


This, says neuroscientist Lisa Feldman Barrett, is the feeling of your brain when it's in a state of “experiential blindness.” It is a passage along the road to emotional intelligence, and the process itself can be a lifeline out of ICU psychosis.


In her 2017 TED talk, “You Aren't at the Mercy of Your Emotions,” Barrett explains the predictive brain, how it orients itself by “sifting through a lifetime of experience, making thousands of guesses at the same time, weighing the probabilities, trying to answer the question, “'What is this most like?’ Not 'What is it?’ but “What is this most like in my past experience?’”


This represents a fundamental departure from brain science that was still mainstream in 1997, at the time of my illness. Then, the modern science of emotional expression focused on the area of the brain called the amygdala as the seat of “basic emotion,” and fear in particular. This theory has roots in Charles Darwin’s The Expression of the Emotions in Man and Animals (The EEMA; Darwin, 1872/2005), but Darwin never intended his observations to be conclusive.


With the development of the so-called functional MRI (fMRI), which images a subject’s brain activity in real time, scientists know that the amygdala, like the rest of the brain, is always active. The amygdala appears to help the brain deal with uncertainty and ambiguity, linking situations to basic circuits for survival behaviors like fleeing or fighting. It is at the hub of a constant storm of brain predictions — what scientists call intrinsic brain activity — that ultimately produces everything you think, feel, or perceive.


This is the basis of Feldman Barrett’s new theory of constructed emotion — and it perfectly describes my experience of emerging from a deep, silent coma.

"In every waking moment, your brain uses past experience, organized as concepts, to guide your actions and give your sensations meaning. When the concepts involved are emotion concepts, your brain constructs instances of emotion."


Have you ever had a period of extended hospitalization that left you disoriented? Inquisitive? Frightened? Please share your experience!