Reflecting on a locked-in syndrome interview I gave 2 years ago & never wrote about, after having another patient trapped in his body. Written from a studio apt in San Jose, CA summer 2026 .

I interviewed Jake Haendel at length ~two years ago after finding his personal videos on my feed. I was in my first year of medical school, had been living in Boston for 5 years, and was coming out of my religious cognition research into the world of pathophysiology promised to me as a teenager. Jake, also from Boston, had locked-in syndrome for 10 months in Massachusetts General Hospital. He initially had presented with balance problems, but ultimately was diagnosed with toxic acute progressive leukoencephalopathy. In 6 months, he didn’t have any conscious movement left. His entire team believed he was in vegetative state. Nurses and doctors and family talking in front of his bed, he heard every word.

He was moved to an extended care facility, ventilated and tube-fed, and eventually placed in hospice. By Christmas the family was told he had days left, and his stepfather said goodbye, all believing he wasn’t conscious.

Ultimately through some miracle according to Jake, someone noticed slight wrist and eye movements which they could communicate to him with (although a physician did argue it was involuntary movement, so even this part of the story was contested and slow). He eventually made slow recovery to the full- talking, mobile soulful man I had the pleasure of cold-emailing and video calling with.

My questions were a lot about his phenomenology, about his experience. About the feelings and turning points for him. Again, during undergraduate studies in my accelerated BA/MD program I was known as the “black sheep”, taking time off for my mental health, going through spiritual episodes through the atheist and cognitive science lens by which I have, engaging in surrealist writing techniques, finding parallels and comfort in Jung and Weil and Dennett. At the religious cognition lab under my mentor, neurologist Dr. Patrick McNamara, where we conducted the largest religious neuroscientific study ever done, I interviewed countless patients on their entire life story from the narrative and cognitive scientific perspective of turning points. With this context and lengthy experience talking with people about their phenomenal highs/lows, I came into this meeting with Jake.

I lost my note paper where I wrote everything down he told me. Isn’t that unfortunate? I had it for a while, but didn’t turn anything from it (although Jake gave me permission to publish and write a story from it). I remember stories and fragments. I remember talking about his religious perspective, before after and during, and how he was raised Irish Catholic in Boston’s North End, but wasn’t particularly religious. During the lock-in time however, he found himself talking to “God”.

He told me about how there was a Law and Order episode playing on repeat on the hospital television near him, and he drove him beyond annoyed. He passionately told me how he can’t bear to hear that theme song again- no one knew he was listening to it for hours on loop, for hours stuck with this berating noise around him.

I remember asking if sensory-padding in a sense, like those we utilize to prevent a bad psychedelic “trip” would’ve helped- he agreed with my idea. I remember talking at length about autonomy, about his relationship with his body and mobility now.

Last week, I had a check-in with my attending (neurology rotation) on one of their patients who was already admitted but becoming worse. This wasn’t a patient I had met or written up a note for, I was tagging along in a sense after we’d finished up with my assigned list. He unfortunately has Guillain-Barre syndrome to such an extreme extent he cannot open his eyes, cannot turn his head, cannot move any muscles but squeeze his grip. We used his hand squeezing (once for yes, twice for no) to conduct our neurology physical exam. I cannot express my heart drop at the single squeeze at each stroke of his limbs, asking “Can you feel this?” Sensation completely intact, no motor ability, and absolutely no reflexes. On head tilt (what we call “dolls eye maneuver), with eyelids held open by my fingers, his eyes stayed fixed in the center, indicating his intact brainstem. Unfortunately my attending rushed us out of the room to another patient, but I stood at the bedside for a moment longer shedding a tear and stroking his leg before leaving.

Tomorrow when I’m back in hospital, I’ll go check in on him. I will ask him what music he likes through a guessing game (and my taste in music matching the typical rock dad lol) and the squeezing communication, and hopefully help improve his experience. Inshallah.