Jacob Haendel, a former head chef from Boston, Massachusetts, has become the first person to recover from an extreme form of locked-in syndrome after overhearing medical staff debating whether to switch off his life support. Haendel, now 35, was diagnosed in 2017 with acute toxic progressive leukoencephalopathy, a rare degenerative condition that left him fully paralyzed and unable to communicate. The condition, caused by the inhalation of toxins, can leave patients aware but unable to move or speak, via the Mirror.
In a matter of months, Haendel’s health deteriorated. His initial symptoms included a high-pitched voice and balance issues, but things quickly worsened. “I started swerving when I was driving, and that led me to walk into the hospital one day,” he recalled. Doctors initially suspected a stroke before diagnosing him with a terminal brain illness. “Eight doctors were standing in my room, and I knew right away it was bad news,” he said. They told him he would lose his ability to walk, become wheelchair-bound, and eventually lose his speech before slipping into a coma.
The disease progressed rapidly, leaving him in excruciating pain. “It was severe chronic pain—autonomic storming, where your body’s systems just go haywire,” he explained. By the third month, he was completely paralyzed, trapped in his own body. “It’s like being trapped—your brain is totally intact, but you can’t communicate with anyone,” he said. Unable to signal for help, he could only listen to the conversations around him. One nurse’s comment, “Don’t worry about talking in front of him, he’s brain dead,” left him questioning if he was still alive.
For 10 months, Haendel remained locked-in, unable to move or speak. Then, a breakthrough occurred when doctors 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. Once medical staff realized he was conscious, they began focusing on helping him regain movement. He developed blinking skills and used a letterboard to spell out words, eventually saying, “I love you,” to his family.
Haendel’s recovery journey continued at Spaulding Rehabilitation Hospital, where he spent three months relearning basic functions. He then spent 15 months at Western Massachusetts Hospital, gradually regaining movement and learning to walk again. By December 2020, he had returned home, making him the first known person to recover from stage four acute toxic progressive leukoencephalopathy and possibly one of the only individuals to recover from such an advanced stage of locked-in syndrome.
Despite his progress, Haendel still faces challenges. “I’m still learning how to walk with a cane, and my voice isn’t what it used to be,” he shared. In 2021, he co-founded a mobile app called Ahoi to help people with disabilities navigate accessibility challenges. Reflecting on his journey, he said, “Before this happened, I was always fun and outgoing, 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, and it will take a long time to get over.”