'Brain dead' man was trapped inside body listening to debate about turning off his life support

A man who had an extreme form of locked-in syndrome and heard a nurse say he was "brain dead" has become the first ever to recover after hearing medical professionals debating whether or not to switch off his life support.

In 2017, Jacob Haendel was living a normal life as a head chef in Boston, but in the space of a few weeks, his life was turned upside down after he was diagnosed with acute toxic progressive, which progressed into locked-in syndrome and forced his body would slowly shut down. An extreme form of locked-in syndrome is a condition where a patient is aware but cannot move or communicate verbally due to complete paralysis and can be caused by brain trauma, infection or exposure to toxins.

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. He ended up paralysed, unable to talk or blink within a few months and, could hear deliberating over switching off machines.

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But suddenly one day he was able to involuntarily move his wrist before developing blinking skills and then made a remarkable recovery and can now speak and move around once again. He is the first ever person to recover from stage 4 acute toxic progressive leukoencephalopathy, he says.

Jacob, 35, said: "Everything has changed after what happened - my outlook, my feelings. Everything is much more positive in all regards. I now appreciate the little things in life - even being able to actually hold a cup of water!"

At 27 years old, Jacob started noticing strange symptoms. "I felt kind of one day. It started with my voice - it became high-pitched, and people started pointing it out," he said. "My balance was a little off too. I could still walk, but I was holding onto walls in my house." He brushed off the symptoms at first, but things worsened.

"I started swerving when I was driving, and that led me to walk into the hospital one day," he said. Doctors initially suspected Jacob had suffered a stroke before he was told what was really wrong. "Eight doctors were standing in my room, and I knew right away it was bad news," Jacob said. "The doctor sat on the edge of my bed and told me I had a very rare, terminal, progressive brain illness."

The disease, known as acute toxic progressive leukoencephalopathy, is a degenerative condition caused by the inhalation of toxins.
Jacob's life unravelled quickly, he was told he would lose the ability to walk within a month, become wheelchair-bound soon after, and lose the ability to speak within a couple of months.

The illness would cause him to "likely slip into a coma and die," he was told. "By month five, I was at stage four, which they said no one ever recovers from," he continued. "They told me I would enter into a coma and pass away." As the disease progressed, Jacob experienced unimaginable pain.

"It was severe chronic pain - autonomic storming, where your body's systems just go haywire," he said. "I had swings of 106-degree fevers, and my heart was working like I was running a marathon." Three months in, Jacob became completely paralysed.

"One of the most horrific parts was when I had an itch," he said. "I couldn't signal anyone, and the weight of a sheet on my skin would hurt. It's like being trapped - your brain is totally intact, but you can't communicate with anyone." Unable to move or speak, he could hear everything around him but had no way to let people know he was still there.

Jacob said: "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!' 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 he 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." For 10 months, Jacob remained locked-in but then, a breakthrough came when medical staff noticed a slight movement in Jacob's wrist - something he didn't even realise he had done.

"They told me to do it again, and that was my one shot, I focused everything I could on moving my wrist." Once doctors were aware Jacob was responding, they focussed their attention on helping him to regain more movement. And he learned how to communicate using slow blinks which led to him being able to use a letterboard, where he could spell out words and eventually regain some form of communication.

The first words he learnt to say was "I love you" to his family. Jacob was transferred to Spaulding Rehabilitation Hospital, where he spent three months relearning basic functions. He was then moved to Western Massachusetts Hospital, where he stayed for 15 months.

"I started regaining movement in my limbs, and I worked on vowel sounds," he said. "I never imagined I'd recover like this." He gained his ability to walk with the help of surgeries and physical therapy and by December 2020, he had moved back home with 24 hour care - the only known person to recover in such a way from stage four acute toxic progressive leukoencephalopathy. And possibly, one of the only from locked-in syndrome.

Despite his incredible progress, Jacob still faces daily challenges. "I'm still learning how to walk with a cane, and my voice isn't what it used to be," he says. In 2021, Jacob co-founded a mobile app, Ahoi, designed to help people with disabilities navigate accessibility challenges when out and about.

Jacob said: "Before this happened to me I was always a fun, outgoing guy, but deep down, I was sad and depressed. Now, even with all the challenges, I appreciate the little things. But it's still been a strange and traumatic period, it will take a long time to get over."