Man with locked-in-syndrome forced to listen to chilling conversation that made him question if he was dead
A man who miraculously recovered from locked-in syndrome has recalled being powerless as he overheard conversations about having his life support switched off.
US man Jacob Haendel was just 27 years old when he developed a rare brain disease which would change the course of his life forever. In 2017, Jacob was working as a head chef when be began to notice strange symptoms such as poor balance and a change to his voice.
The symptoms led Jacob to get checked out at his local hospital, leading to the discovery that he was suffering from a very rare, terminal brain illness called acute toxic progressive leukoencephalopathy (ATL).
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A disease which causes damage to white matter in the brain, ATL is caused by exposure to certain medications and toxic substances. It's not known how Jacob contracted the disease, however he believes it may have been something he inhaled while working as a chef.
Over the next couple of months, Jacob's life would take a downward spiral as he lost the ability to walk and talk, with doctors informing him that he would likely 'enter into a coma and pass away' when the disease progressed into its final stages.
Three months into the illness, Jacob became locked-in his own body and was left unable to communicate with the people around him.
"I couldn’t signal anyone, and the weight of a sheet on my skin would hurt," he explained. "It’s like being trapped - your brain is totally intact, but you can’t communicate with anyone."
Perhaps one of the most distressing parts for Jacob was being able to hear the conversations around him but being powerless to let anyone know he was still conscious.
"One time I overheard the nurses talking, and one of them said, ‘I have to tell you about this really awkward hookup I had last night!'" Jacob recalled.
"It was the funniest thing I had heard in months, and I was almost laughing inside. But then one of them said, ‘don’t worry about talking in front of him, he’s brain dead'."
Jacob then began to wonder if he had in fact died, and was hallucinating.
“It was so strange and horrible," he said.
"They were discussing withdrawing life support. I was in so much pain, I was ready to go anyway."
However after 10 months locked in his body Jacob was able to move his wrist, which began his long journey of rehabilitation - relearning movement, communication and eventually how to walk and talk.
"I’m still learning how to walk with a cane, and my voice isn’t what it used to be,” he said.
The condition also led Jacob to co-found mobile app Ahoi in 2021, which helps disabled people navigate accessibility issues while out.
"Everything has changed after what happened - my outlook, my feelings," he added.
"I now appreciate the little things in life – even being able to actually hold a cup of water!"
Brenna Cooper