Man, 36, Declared Brain Dead Details 'Grueling' Recovery from Locked-In Syndrome: 'I’m Still In Here' (Exclusive)

• Jake Handel was diagnosed with a terminal brain disease that caused locked-in syndrome, leaving him unable to move or speak
• The 36-year-old was in a coma for 10 months because doctors believed he was brain dead
• Originally given six months to live, he is now speaking out about his painful but remarkable years-long road to recovery

Jake Handel had “everything going his way”. He had just gotten married and was working as an executive chef in Boston when he received a devastating, life-changing diagnosis.

In May 2017, Handel noticed that his voice was starting to get higher than usual. He dismissed it at first, but it wasn’t until he started having trouble with his balance that he decided to visit the emergency room over Memorial Day weekend.

Doctors believed he was having stroke-like symptoms, so they admitted him and gave him intravenous fluids. Handel, now 36, had been to the hospital many times before and expected to be monitored for a few hours and then simply sent home with antibiotics. And he was right.

“They were actually going to fire me when my wife came in and said, ‘You can’t fire him. This is not my husband.’ She played their old voicemail. My voice and the voice I was using was completely different,” he tells PEOPLE. “So the doctors, nurses and emergency room staff said, ‘Wow,’ and ordered an emergency MRI.”

A day later, Haendeal was diagnosed with acute toxic leukoencephalopathy (ATL), a rare and often fatal brain disease caused by exposure to toxic substances. They gave him six months to live.

“I woke up and there was a whole team of people in the room,” he recalls. “The doctor sat at the foot of my bed, put his hand on my knee and said, ‘Jacob, we’re so sorry. You have a rare terminal and progressive brain disease.’”

Jake Handel in the hospital.

Courtesy of Jake Haendel, Ahoi

‘I was a prisoner in my own body’: one man’s incredible recovery from locked-in syndrome

Handel immediately thought of his late mother, who died of breast cancer when he was 19. He remembered watching her struggle with the disease 10 years before her death, a time when he struggled mentally and turned to medication to cope.

Doctors told Handel that in his case, ATL was attributed to past substance abuse. “I literally said out loud, ‘I did.’ My first thought was how disappointed my mom would be in me,” he says. “There were very strong emotions all at once.”

“I told my wife, ‘I watched my mom die. You shouldn’t watch me die,’ he adds.

After discovering his diagnosis, the doctors took out a white board and described exactly how Handel’s disease was expected to progress. In the first month, he would not be able to walk even with the help of an aid. For two months, he would be confined to a wheelchair until he could not tolerate it due to chronic pain. By the third month, he will be bedridden and will lose the ability to eat, swallow and speak. In the fourth and final stage of the disease, he would fall into a coma and eventually die.

“And no one has ever survived the fourth stage,” says Haendel.

Jake Handel in the hospital.

Courtesy of Jake Haendel, Ahoi

Unfortunately, Handel’s doctors were “right on the money with that time frame,” and his health deteriorated. “I underestimated the amount of pain I was going to feel,” he admits, comparing his body to a car that went crazy.

By November, Handel’s speech had completely disappeared. He was admitted to the neurointensive care unit at Massachusetts General Hospital as his condition continued to deteriorate. About this time he fell into what the doctors believed to be a coma, which was in keeping with the natural progression of the disease.

On December 1, 2017, he heard someone call him brain dead for the first time.

“One of the doctors said to my wife, ‘We’re really sorry Mrs. Handel, but your husband won’t make it until Christmas.’ In my head I was exuberant because I had no illusion that I was going to die. But I am in so much pain that it was also a relief that this constant struggle will be over”, he explains.

“But then I heard they said I was brain dead and it was time to start considering going off life support. I was thinking, am I dead? How can I think, how do I have memories?” he continues. “So even though I had these thoughts that this is going to be over soon, I said, ‘Oh, don’t do it, I’m still here.'”

A dad with a rare shut-in syndrome can only move his eyes

Handel seemed to be in a vegetative state. However, unknown to his doctors, his illness caused locked-in syndrome, a rare and serious neurological disorder where damage to the brainstem leads to complete paralysis of all voluntary muscles except those that control the eyes, according to the National Organization for Rare Disorders (NORD). While he still feels touch, pain, itching and other sensations, and is fully aware of his surroundings and surroundings, Handel is “locked” in his body, as the name of the syndrome suggests.

“It was the worst you can imagine,” he explains. “It was like a prisoner in solitary confinement, but worse. You are totally paralyzed, unable to move, speak or signal. I was just talking to myself in my head. It was more than survival to keep my brain going and somehow fend off a full blown panic attack.”

“Everything in my body was failing, and the only thing that seemed completely intact was my brain, which is always strange to me considering that I had a brain disease and the damage was really catastrophic,” he adds.

Handel remained in this state for 10 months, which he recalls as brutal times. He was transferred to hospital care; however, he was eventually readmitted to the hospital because insurance only covered six months of care.

“I wasn’t dying, but I wasn’t getting better, which was a scary thought,” he shares. “I kept hearing them say that I won’t get out of this state. And I said, ‘Oh my God. I could be stuck like this forever,’ which was actually scarier than death.”

Jake Handel in the hospital.

Courtesy of Jake Haendel, Ahoi

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In June 2018, Handel was transferred from hospice back to Mass Gen’s neurointensive care. While there, he experienced the first glimmer of hope that he was out of confinement syndrome.

“Around the 4th of July, I heard the familiar voice of Dr. Levinson, who was in charge of my complex care. He said, ‘Do you see that? Something is moving.’ And other doctors said, ‘No, it’s unintentional.'”

“It was the first time the medical staff had spoken directly to me in a while. He just said, ‘Hey, I don’t know if you can hear me, but if you can, say it again.’ This rush kind of passed me by and I was like, ‘Wow, this is my only chance. I don’t even know what I moved, but just do something,’ he recalls. “I tensed up my whole body and I didn’t think it was working, but then I heard, ‘Wow, he’s really doing it.'”

Handel’s doctors immediately brought in a specialist in non-verbal speech therapy, who began working with him regularly to relearn how to blink. During the next two weeks he could blink. The medical staff then created a system where he could communicate by blinking and sticking out his tongue, which eventually transitioned to him using a letter board to create sentences. “The first thing I said was, ‘I hear you,'” he says.

Jake Handel uses a letter board to communicate during recovery.

Courtesy of Jake Haendel, Ahoi

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One day, Handel recalls overhearing a conversation about his transfer to a rehabilitation facility.

“I heard conversations about how they won’t accept me because I can’t participate in the mandatory three hours of physical, occupational and speech therapy. I could only participate in the speech. I started to cry. I heard my heart machine go on.”

“They said, ‘Calm down, calm down. Would you like to use the letter board?’ And I just wrote ‘I can do three hours.’ I heard them say, ‘Oh my God, he’s actually monitoring our conversations.’ And that was really the moment they realized how untouched I was. And that’s when I felt for the first time, okay, they actually know I’m here.”

A few days later, Handel was transferred to the Spaulding Rehabilitation Hospital in Boston. “It was very motivating for me and at that point I thought I was going to do everything in my power to get out of this.”

Jake Handel.

Courtesy of Jake Haendel, Ahoi

The next few years were “a very arduous, slow process,” as Handel underwent intensive therapy to retrain his brain to communicate with his body at Western Massachusetts Hospital.

“I thought I was over the worst. Not that it was worse than being locked up, but it was a new kind of pain that I hadn’t experienced,” he explains of his recovery. “It was really bad, but I kept telling myself if you want to get out of the hospital, if you want to have a life again, this is what it takes.”

By 2019, Handel began to emerge from his paralysis and produce children’s sounds. The following year, he started speaking in sentences and was able to get out of bed and sit in a wheelchair for the first time.

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In December 2020, he officially returned home and has been receiving outpatient therapy since then, which he will continue as his recovery is still ongoing.

“Now I walk with a walker at home. They can also get in and out of the car. I move around my community on a scooter, but in therapy I use a cane. They can also feed and hydrate,” he says. “In 2021, I still wasn’t able to take care of myself. And in the last year, I’ve been able to take care of myself.”

Jake Handel.

Courtesy of Jake Haendel, Ahoi

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Handel, who is now divorced, says it’s amazing he’s made it this far in his recovery. He shared his journey on social media to help others understand the importance of determination when the going gets tough. The 36-year-old is also the co-founder of an accessibility-focused app, Ahoi, which helps users find places that meet their specific needs like accessible parking, entrance ramps, elevators, automatic doors, etc.

“I have such a different view of what is important in life. And going through what I went through definitely made me stronger,” he tells PEOPLE. “It feels amazing and a big part of why I tell my story and why I have this company is to help people and the world.”

“I want people not to give up on recovery when they hear they have a terminal illness,” says Haendel. “A lot of what I want to do with my life now is just help and motivate people.”

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