Jacob Haendel became the ‘first person ever’ to recover from the condition and explained the terrifying conversations he overheard
Only a few years ago Jacob Haendel lived a perfectly normal life, but in a matter of weeks, his body began rapidly deteriorating.
In 2017, at just 27 years old, he was working as head chef at a restaurant in Boston, Massachusetts, when his entire world was turned upside down following his diagnosis of acute toxic progressive leukoencephalopathy.
This condition progressed into locked-in syndrome, and forced his body to slowly shut down.
Haendel’s case was extreme, and in a matter of month,s he went from being mobile to being unable to even blink.
The neurological disorder meant that he was aware of his surroundings, but he could not move or communicate verbally, due to complete paralysis, which can be caused by a brain trauma, infection, or exposure to toxins.
Staff labeled him ‘brain dead’ and he was forced to listen to debates about turning his life support off – all while being trapped inside his body.
Miraculously, he was able to involuntarily move his wrist and subsequently developed blinking skills.
He has since made a remarkable recovery, which lead to the now 35-year-old being able to speak and move around once again.
It is Haendel’s understanding that he is the first ever person to recover from stage four acute toxic progressive leukoencephalopathy.
Having lived to tell the tale, he said: “I now appreciate the little things in life – even being able to actually hold a cup of water.”
Haendel was trapped inside his body for 10 months before making the breakthrough, and recalled some of the awful conversations he heard.
“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’,” he 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’.”
Doctors also spoke about his quality of life: “They were discussing withdrawing life support. I was in so much pain, I was ready to go anyway”, he said.
It was at that point that staff noticed a slight movement in his wrist.
“They told me to do it again, and that was my one shot, I focused everything I could on moving my wrist,” he said.
It is not known exactly how Jacob developed the condition, though he says his life as a chef consuming certain chemicals ‘wilfully and otherwise’ may have been a factor.
Incredibly, the former chef regained his ability to walk again with the help of surgeries and physical therapy, and while he has moved back home, he is still under 24-hour care.
“I never imagined I’d recover like this,” he added.
