“It was like being a prisoner in solitary confinement, but worse,” Jake Haendel tells PEOPLE
- Jake Haendel was diagnosed with a terminal brain illness that triggered locked-in syndrome, which left him unable to move or speak
- The 36-year-old was in the coma-like state for 10 months as doctors believed he was brain dead
- Initially given six months to live, he’s opening up about his painful yet remarkable years-long recovery journey
Jake Haendel had “everything going for him.” He was newly married and working as a head executive chef in Boston when he received a devastating and life-changing diagnosis.
In May 2017, Haendel noticed that his voice started to become higher pitched than normal. Initially brushing it off, it wasn’t until he started having balance issues that he decided to visit the emergency room on Memorial Day weekend.
Doctors believed he was having stroke-like symptoms, so he was admitted and given IV fluids. Haendel, 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 about to discharge me when my wife came in and said, ‘You cannot discharge him. This is not my husband.’ She played an old voicemail for them. My voice and the voice I had been using were completely different,” he tells PEOPLE. “So the doctors and nurses and emergency room staff were like, ‘Whoa,’ and ordered an emergency MRI.”
One day later, Haendel was diagnosed with acute toxic leukoencephalopathy (ATL), a rare and often fatal brain disease caused by exposure to toxic substances. He was given six months to live.
“I woke up and there was a whole team of people in the room,” he recalls. “A doctor was sitting on the foot of my bed, put his hand on my knee and was like, ‘Jacob, we’re extremely sorry. You have a rare terminal and progressive brain illness.’”
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Haendel immediately thought about his late mother, who died of breast cancer when he was 19. He remembered watching her struggle to fight the disease for 10 years before her death, a time where he struggled mentally and turned to drugs to cope.
Doctors told Haendel that in his case, the ATL was attributed to that past substance abuse. “I literally said out loud, ‘I am f—ed.’ My first thought was how disappointed my mom would be in me,” he says. “There were very powerful emotions all at once.”
“I told my wife, ‘I watched my mom die. You shouldn’t have to watch me die,’” he adds.
After revealing his diagnosis, doctors pulled out a whiteboard and broke down exactly how Haendel’s disease was expected to progress. The first month he wouldn’t be able to walk, even with the help of assistive devices. Month two, he would be confined to a wheelchair until he’s unable to tolerate it due to chronic pain. By month three, he would be bedridden and lose the ability to eat, swallow and talk. In the fourth and final stage of the disease, he would slip into a coma and eventually die.
“And no one had ever survived stage four,” Haendel says.
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Unfortunately, Haendel’s doctors were “right on the money with that timeframe,” and his health took a turn for the worst. “I underestimated the amount of pain I would be in,” he admits, comparing his body to a car that’s gone haywire.
By November, Haendel’s speech was fully gone. He was admitted to the neuro ICU at Massachusetts General Hospital as he continued to deteriorate. Around this time, he slipped into what doctors believed was a coma, which was consistent with the natural progression of the disease.
December 1, 2017 was the first time he heard someone refer to him as brain dead.
“One of the doctors told my wife, ‘We’re really sorry Mrs. Haendel, but your husband will not make it to Christmas.’ In my head, I was bummed because I had no illusion that I was going to die. But I’m in so much pain that it was also a relief that this constant struggle was going to be over,” he explains.
“But then I heard them say I was brain dead and it’s time to start considering withdrawing life support. I was contemplating, am I brain dead? How can I think, how do I have memories?” he continues. “So even though I was having those thoughts that this is going to be over soon, I was like, ‘Oh, don’t do that, I’m still in here.’”
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Haendel appeared to be in a vegetative state. However, unknown to his doctors, his disease triggered locked-in syndrome, a rare and serious neurological disorder where damage to the brain stem leads to complete paralysis over all voluntary muscles except for the ones that control the eyes, according to the National Organization for Rare Disorders (NORD). While he can still feel touch, pain, an itch and other sensations, and he is entirely aware of his environment and surroundings, Haendel is “locked” inside his body, as the name of the syndrome implies.
“It was the worst you can imagine,” he explains. “It was like being a prisoner in solitary confinement, but worse. You’re totally paralyzed, you can’t move, talk or signal. I was just talking to myself in my head. It was more of survival to keep my brain going and kind of talk myself out of a full panic attack.”
“Everything in my body was failing and the one thing that seemed to be fully intact was my brain, which is always strange to me considering I had a brain illness and the damage was really catastrophic,” he adds.
Haendel remained in this state for 10 months, which he recalls being a brutal time. He was transferred to hospice care; however, he was eventually admitted back to the hospital because insurance only covered six months of care.
“I wasn’t dying, but I wasn’t getting better, which was a frightening thought,” he shares. “I kept overhearing them say I wouldn’t make it out of this state. And I was like, ‘Oh my god. I could be stuck like this forever,’ which was actually more terrifying than dying.”
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In June 2018, Haendel was transferred from hospice care back to Mass Gen’s neuro ICU. While there, he experienced the first glimpse of hope that he’d come out of locked-in syndrome.
“Around 4th of July, I heard the familiar voice of Dr. Levinson, who was in charge of my complex care. He was like, ‘You guys see that? He’s moving something.’ And the other doctors were like, ‘No, that’s involuntary.’”
“It was the first time medical staff had talked to me directly in a while. He just said, ‘Hey, I don’t know if you can hear me, but if you can, do that again.’ I kind of had this rush go through me and I was like, ‘Wow, this is my one and only shot. I don’t even know what I moved, but just do something,’” he recalls. “I tensed up my entire body and I didn’t think it was working, but then I heard, ‘Wow, he is actually doing it.’”
Haendel’s doctors immediately brought in a specialist in nonverbal augmented speech therapy, who started working with him regularly to relearn how to blink. Over the next two weeks, he was able to blink. Medical staff then created a system where he was able to communicate yes and no by blinking and sticking out his tongue, which eventually progressed to him using a letter board to create sentences. “The first thing I spelled out was, ‘I can hear you,’” he says.
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One day, Haendel recalls overhearing a conversation about moving him to a rehabilitation facility.
“I heard crosstalk of how I wouldn’t be accepted because I can’t participate in the mandatory three hours of physical, occupational and speech therapy. I could only participate in speech. I started freaking out. I heard my heart machine going off.”
“They were like, ‘Calm down, calm down. Do you want to use the letter board?’ And I just spelled out ‘I can do three hours.’ I heard them say, ‘Oh my God, he’s actually tracking our conversations.’ And that was really the moment they realized how intact I was. And that was when I first felt like, okay, they actually know I’m in here.”
Days later Haendel was transferred to Spaulding Rehabilitation Hospital in Boston. “It was very motivating for me and at that point I was like, I am going to do everything in my power to get out of this.”
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The next few years were a “very grueling, slow process,” as Haendel went through intense therapy retraining his brain to communicate with his body at Western Massachusetts Hospital.
“I thought I’d been through the worst. Not that it was any worse than being locked in, but it was a new type of pain that I hadn’t experienced,” he explains on his recovery. “It was quite 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, Haendel started coming out of his paralysis and making baby sounds. The following year, he started talking in sentences and was able to get out of bed and into a wheelchair for the first time.
