For nearly a year, Jake Haendel couldn’t move or speak, but could see and hear everything that was going on around him.
Then 28, the former chef was suffering from a rare brain disease that causes problems with speech and movement.
Doctors aren’t sure what caused his condition but said it was likely some type of toxin he had inhaled.
They only gave him six months to live when he was first diagnosed, but he said he is now the only person in the world to survive the deadly condition.
What started as a voice change and balance issues quickly accelerated over the next few months until he couldn’t communicate or move at all. However, he still fully understood what was going on around him.
Not only was he suffering from a brain condition, but he also developed ‘locked in syndrome,’ a coma in which a person can’t move or talk but is still conscious.
His condition was severe and deemed terminal. Doctors believed there was nothing they could do for him so he was sent home, where he said his family didn’t realize he was still aware of his surroundings.
While trapped in his body, Mr Haendel heard nurses call him ‘brain dead’ and a family member say he would likely die soon, but the most shocking thing he heard was an argument between his father and then-wife, which ended in a violent altercation.
Jake Haendel detailed his journey with acute toxic leukoencephalopathy (ATL) on his TikTok, Instagram and a new podcast
Mr Haendel’s ordeal began in May 2017. He was newly married and the head executive chef at a restaurant.
One day, he noticed ‘I kind of felt weird.’ He had a higher pitched voice than normal, his balance was unsteady and he swerving while driving.
Ellen, now his ex wife, told him he should go to the hospital.
He went to the emergency department and was admitted with stroke-like symptoms.
He said: ‘I still thought I would go home and it would be like any other time I was in the hospital… but life would definitely never be the same.’
By the time morning came, eight doctors surrounded Mr Haendel’s bed with ‘somber looks’
He said doctors told him: ‘We’re so sorry you have six months to live. You have an extremely rare brain disease.’
Mr Haendel, now 36 and a Boston resident, was diagnosed with acute toxic leukoencephalopathy (ATL), a condition that damages brain regions that help with communication and body movements.
Mr Haendel’s condition specifically was acute toxic progressive leukoencephalopathy (ATPL), with ‘progressive’ indicating his symptoms were quickly worsening.
This caused ‘locked in syndrome.’
Doctors told him his symptoms would get worse very quickly, taking away his ability to walk and confining him to a wheelchair. After that, his body would contract and he’d be in ‘a lot of pain.’
He then would lose the ability to eat, swallow and talk. Eventually he would need tubes to breath and a feeding tube to get nutrients ‘until you slip into a coma and likely die.’
He was told there was no chance he would get better: ‘I wished they warned me how much pain I was actually going to be in.’
As time went on, everything doctors said would happen did.
ATL damages the brain’s white matter, which connects brain regions that help with communication and body movements and plays a crucial role in cognitive function.
White matter is full of nerve fibers protected by a covering called myelin. Myelin protects the fibers and helps send messages and electrical signals in the brain.
Mr Haendel said two nurses were gossiping in his room. When one said they shouldn’t talk in front of the patient, the other responded saying he couldn’t hear them because he was ‘brain dead’
Damage to these interrupts the transmission of messages and communication between brain regions, leading to problems with movement and speaking.
ATL has multiple causes, including environmental toxins, pesticides, chemotherapy and drug abuse.
Doctors told Mr Haendel his condition resulted from a toxin he inhaled. He and his doctors aren’t sure exactly what toxin, but Mr Haendel had been using heroin and he said he was regularly exposed to chemicals and pesticides in his day job as a chef.
A 2019 study analyzing approximately 100 patients with ATL found opioids were the second most common cause of the condition (19 percent) and led to the second worst outcome in patients.
Mr Haendel was repeatedly transferred from long-term care facility to the hospital to rehab clinics since his illness was deemed terminal and doctors didn’t know how to help him.
All the while, Mr Haendel heard people discussing him, thinking he wasn’t conscious. Little by little, he noticed the medical staff caring for him eventually stopped acknowledging and talking to him.
He told BuzzFeed he heard a member of his medical team complaining about caring for him and when there was a discussion about the high costs he was incurring, one family member said: ‘Well, I have a feeling the problem will work itself out any day now.’
One day, two nurses entered his room gossiping. When one said they shouldn’t talk in front of the patient, Mr Haendel said the other responded: ‘Don’t worry, he can’t hear you. He’s brain dead, anyway.’
Mr Haendel thought: ‘Holy s***, they think I’m brain dead? [I have to] let them know. During this time, I realized there was something scarier than death. I thought I might be stuck like this forever.’
Mr Haendel’s condition specifically was acute toxic progressive leukoencephalopathy (ATPL), with ‘progressive’ indicating his symptoms were quickly worsening. This caused ‘locked in syndrome,’ a coma in which a person is still conscious
He said on the podcast Blink: ‘I just started to panic and freak out. Am I brain dead? Could it be? Is that possible?
‘Immediately I’m on a mission. I [have to] let them know I’m not brain dead.’
Doctors performed MRIs and EEGs to determine brain function and activity, which showed a ‘catastrophic’ brain injury.
Mr Haendel said: ‘There was no possible way any neurologist thought I was with it at all. Vegetative at best. Disconnected from all reality.’
He was experiencing ‘locked in syndrome.’
Mr Haendel said ‘doctors didn’t know what to do with me. I wasn’t getting better but I wasn’t dying either. It felt like I was stuck in limbo.’
At one point, he was sent home to be cared for. It was then that Ellen began isolating her husband from family and friends.
For the little family she still allowed to visit, Ellen established a rigid care plan.
When Mr Haendel’s father was 45 minutes late for one of his care shifts, he and Ellen began yelling at each other.
Mr Haendel heard someone shouting ‘You’re strangling me! You’re strangling me.’
He said on Blink: ‘Then I hear a bottle pop… like a two-liter Coke bottle [bouncing] off someone’s head. Then I hear a human being tumbling down the stairs, crashing into the door and I hear my dad’s mumbles.
‘I want to say I heard “why did you do this to me?” and then I heard the door open and someone crawling out the door and the door pulled shut.’
He then heard Ellen calling 911, saying ‘My father-in-law just tried to kill me. Tried to strangle me,’ though Mr Haendel said he is almost certain the voice of the person who asked ‘why did you do this to me?’ was his father’s.
Mr Haendel added: ‘And that’s all I know. l did not see my father ever again or hear anything about him again or anyone in my family ever again.’
While he detailed the incident on the Blink podcast, he has yet to reveal more details on anything following that event.
However, he has detailed his recovery, which began when a doctor at Mass General Hospital in Boston noticed him make subtle movements.
Mr Haendel said the doctor asked: ‘Hey, do you guys see that? I think he’s moving something.’
However, the doctor was dismissed and told the movements were involuntary.
Mr Haendel said on TikTok: ‘He told me that if I could hear him, I should try to move.
‘I gathered every bit of strength I had and tensed my whole body — and it actually worked. It was the first real sign of hope.’
Doctors brought in a nonverbal speech therapist who taught him how to communicate via blinking, then use a letterboard, on which he spelled out ‘I can hear you.’
In 2019, after intensive physical, occupational and speech therapy, he began to be able to move his neck and make primitive noises. Then came the use of his fingers and arms.
At the end of 2020, Mr Haendel was able to move home and for the last four years has been continuing therapy and is now learning to walk with a cane.
He said: ‘At the end of 2020, after years of hard work, I finally moved back home, though I still needed 24-hour care. Today, I’m still recovering, but I’ve come a long way.’
