'Is anybody in there?' Life on the inside as a locked-in patient

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• Author: Josh Wilbur
• Category: article
• URL: https://www.theguardian.com/news/2020/nov/26/life-on-the-inside-as-a-locked-in-patient-jake-haendel-leukoencephalopathy
  

  Highlights

Jake Haendel spent months trapped in his body, silent and unmoving but fully conscious. Most people never emerge from ‘locked-in syndrome’, but as a doctor told him, everything about his case is bizarre

In a matter of months, Jake’s existence became reduced to a voice in his head.

He was diagnosed with toxic progressive leukoencephalopathy, also known as “chasing the dragon syndrome”, usually caused by inhaling the fumes from heroin heated on aluminium foil. An unknown toxin, probably something in the substance that had been added to the heroin to make it go further, was wreaking havoc in Jake’s brain. There was no known cure or treatment, so he was sent home with a store of palliative medications.

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.

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.

Since that time, medical experts have invented ways of communicating with locked-in patients (including a groundbreaking “brain-reading device”). They’ve also gained a deeper understanding of locked-in patients’ mental states, with studies showing that a surprising number report a positive quality of life.

“I loved when anyone would talk to me, even if they didn’t truly believe I was ‘in there’. One of the aides sang to me. Another said: ‘Jake, you look like a Greek god.’ I admit I did like that.”

In his room at the nursing home, a clock on the wall hung just out of view. “That was like torture,” he told me. Television offered solace, not just as entertainment but also as a means of tracking time. Jake figured out what network cable shows appeared on which nights. “I always wanted to know what time it was, what day it was, how long it had been,” Jake said.

“I would have to listen to a religious nut every morning asking for money,” he would later write in a Facebook post. “I felt like I was in hell, like I was already being tortured, and these scam artists were torture on top of torture.”

After six months, Jake had lived longer than the state had expected he would, and could no longer receive at-home palliative care.

In the weeks that followed, Jake underwent a shift in his thinking. He started repeating a string of positive phrases to himself – “You can do this”, “You’re gonna make it”. “I just really wanted to get better,” he said. With effort, he was beginning to move his neck and tongue. “I was so freakin’ excited,” Jake told me. Soon, he achieved a crude system of communication: tongue out for “yes”, blink for “no”.

Again, the staff were stunned. They had suspected he was aware to some degree, but Jake could answer every question – about his condition, about his past – clearly.

How the brain repairs itself following traumatic injury or progressive disease remains mysterious.

“The brain wants to heal, to change itself and form new neural pathways,” he said. “Repetition is key, and Jake was willing to put in the work.”

He made video calls to family and friends who hadn’t known his whereabouts for months, ecstatic at the opportunity to say: “Surprise, I’m alive!”

Locked-in syndrome is rare – estimates say there are only a few thousand in the US at any one time. Most sufferers are victims of stroke or traumatic brain injury, and very few regain significant motor function.

Jake is one of few to emerge from a locked-in state, and doctors describe his recovery as “remarkable” and “unique”.

After meeting Jake, I spoke to his father by phone. He sighed and said that drugs had put his son in a terrible place. In his recovery, though, “He’s become the man I wanted him to be.”

Jake is adamant that his condition improved because of a mental breakthrough – a shift in his mindset after months of being locked in. “I reached a point where I was like, ‘Fuck this, I’m going to recover.’