Life on the inside as a locked-in patient

Jake Haendel came close to dying in 2017. He was diagnosed with toxic progressive leukoencephalopathy, caused by the use of adulterated heroin. Haendel did not die, but spent a year unable to move or communicate, while still being painfully aware of bodily sensations, the passage of time, and what was going on around him.

To outside observers, Jake exhibited no signs of awareness or cognition. "Is he in there?" his wife and father would ask the doctors. No one knew for sure. An electroencephalogram (EEG) of his brain showed disrupted patterns of neural activity, indicating severe cerebral dysfunction. "Jake was pretty much like a houseplant," his father told me.

They had no way of knowing Jake was conscious. In medical terms, he was "locked in": his senses were intact, but he had no way of communicating.

"I could do nothing except listen and I could only see the direct area in front of me, based on how the staff would position me in bed," Jake later wrote. The disease had attacked the cables carrying information through his brain and into his muscles, but had spared the areas that enable conscious processing, so he was fully alert to the horror of his situation. He struggled to make sense of this new reality, unable to communicate, and terrified at the prospect of this isolation being permanent.

Haendel tells of the despair and boredom of those months, and the joy of gradually regaining his abilities at the Guardian.

[via Damn Interesting]