He Could Hear Everything, But Couldn't Move Or Speak — This Man Survived Being "Locked-In" For 10 Months
@miraclman31
Everyone thought I was in a coma. I was actually conscious. Part 1: My name is Jake, and this is my story. It all started when I noticed something was off—I felt weird, my voice changed, and I kept losing my balance. I went to the hospital for an emergency MRI, and that's when I got the news: I had an extremely rare brain disease, and they told me I had only six months to live. But I'm still here, sharing my journey with locked-in syndrome. This is just the beginning. #lockinsyndrome #terminalbraindisease #brainillness #tbi #myjourney #survivor #recovery #recoveryispossible #lifeafterinjury #accessibility #ahoi #disability #hospital #emergencyroom #diagnosis #disabled #disabilityawareness #mystory
ATPL is an extremely rare brain disease that attacks the white matter of the brain. According to Science Direct, it can cause mild cognitive dysfunction, dementia, coma, and eventually, death. In 2017, Jake began to experience his first symptoms: his voice became higher pitched, and he had issues with his balance.
Jake's illness stemmed from an inhaled chemical, though his doctors still aren't sure what exactly it was. Jake said that though he did use heroin before he began experiencing symptoms, he also regularly came into contact with chemicals and pesticides in his day job as a chef.
He went to the hospital for help, where he was admitted with stroke-like symptoms and given an emergency MRI. The next morning, doctors told Jake that he had an extremely rare, terminal brain disease and that he only had six months to live.
The doctors said that he would slowly begin to lose motor control, then lose the ability to eat and swallow, fall into a coma, and finally, die. As the months passed, their predictions were correct.
Jake was diagnosed at the end of May 2017, and his symptoms continued to get progressively worse. By December, he was completely immobile and needed a ventilator to breathe and a feeding tube for nutrition.
Since his illness was thought to be terminal, Jake was placed in hospice care. Though he couldn't communicate, he said in a comment on one of his videos that he fully understood what was happening and going on around him. Over time, he began to notice that the medical staff caring for him stopped addressing him or talking to him when entering his room.
Jake fully realized how he was perceived after he heard a couple of nurses talking one day. One said she had some gossip about an awkward hookup to share from last night, but the other suggested they shouldn't talk in front of the patient (Jake). Then the first nurse replied, "Don't worry, he can't hear you. He's brain dead, anyway."
Jake said he immediately panicked and thought, "Holy shit, they think I'm brain-dead? I've gotta let them know." But he had no way of doing so.
In a comment on one of his posts, he said, "During this time, I realized there was something scarier than death. I thought I might be stuck like this forever."
Jake was later taken out of hospice care and put back into the regular hospital. He said that doctors weren't quite sure what to do with him because he wasn't getting better, but he wasn't getting worse, either. Finally, after 10 months of being locked in, a doctor on rounds saw him moving and believed that Jake might actually be conscious.
Jake could hear that doctor pointing out movements on his body while other doctors argued that they had seen his brain scans and the movements were likely involuntary.
The doctor addressed Jake directly and said, "Hey, I don't know if you can hear me — but if you can, do that again."
Jake said it was the first time anyone in the medical community had spoken directly to him in 10 months. He tensed up every muscle in his body, unsure if anything would be visible to the doctor, and miraculously, it was.
The doctor called for a nonverbal augmentative speech therapist to teach Jake how to blink, and slowly, over time, he learned how to use that process to communicate. After a couple of weeks, he moved on to a letterboard, where, though it took him ten minutes, he spelled out, "I can hear you," leaving the doctors shocked.
In 2019, he began to be able to move his neck and make "baby sounds." Eventually, he could move his fingers and his arms, and through physical therapy and speech therapy, he has been learning how to regain control of his body.
BuzzFeed reached out to Jake to talk more about his experience. When asked what motivated him to share his story, he said there were a few reasons: "I went through this six months to live, rapid decline, and then ended up in Locked-In Syndrome for 10 months, and recovering in the hospital for, you know, three years and change," Jake explained.
"I'm able to verbally speak about it, and I had all of that cognition the entire time. And all these combined, I believe, make me able to tell this unique, wonderful kind of story in a compelling way."
Jake watched his mother battle terminal cancer, and even though he, too, was diagnosed with a terminal disease, he hopes people will question, "Does terminal have to be terminal?" He said he wants to "help people and get them to not give up through the worst."
Jake also said, "The way I used to live, I had a lot of depression. I abused drugs, but I could, like, kind of do anything I wanted. I could walk. I had finances, a good job, a girlfriend, everything — and I was just not happy with life and for the little things. Where I am now, I've gained a lot of perspective. I'm much happier with all these barriers. I'm still in chronic pain, but I want to get people to kind of unlock that perspective without having to go through something that very well might kill them."
When asked what the most difficult part of his recovery has been, Jake said, "This whole process has been super difficult."
"The process of relearning how to breathe was really hard; relearning how to phonate and make sound. There was a long period where I could cry and I could scream. So, we knew my vocal cords worked, but I couldn't make any other sound, and that was really hard," he explained further.
"It's just like a laundry list. Every aspect of becoming unparalyzed. Right now, I'm currently getting over my fear of falling. At this point, nothing surprises me, nothing really scares me — but you get me standing with nothing to hold on to, my brain stops working, and I just go into a panic."
Jake has continued to share stories of his time being locked in. In one video, he mentioned that he remembered specifically when someone told him out loud that they didn't feel like brushing his teeth that day.
"I thought to myself, 'I didn't even know it was teeth brushing time,' and why did he say that out loud? He could have said nothing," Jake said.
Jake also said he even overheard someone discussing how expensive his care was going to be, and one of his family members replied, "Well, I have a feeling the problem will work itself out any day now."
Even through all that, Jake said the thing that surprised him the most during this process was "how many good people there are out there."
"I don't want to make myself sound like a downer or anything, but I had this grim [out]look. I didn't really trust many people outside of my circle. And I kind of, you know, thought there was like, a bunch of shitheads and sharks out there," Jake began,
"Throughout this whole recovery, I was essentially alone and kind of missing in the hospital. I had no family around, and I'm living in these different hospitals, and I have no one, [aside from] a bunch of healthcare people — nurses, personal CNAs, care assistants — they were so good to me. Same with the therapists, too.
In a long-term care facility, you're supposed to buy your own soap. And I had no finances or visitors, so they'd be like, 'What kind of soap do you want?' And they would get it for me. They would get balloons for my birthday.
And that carried on when I moved out of the hospital, too."
When asked what he hopes people learn from his story, Jake said, "Things can always be worse."
"I used to say that on my road downhill," he said. "You know, it's like two months in — I'm in so much pain, I'm now bed-bound, I've got, like, four months left to live. And I'm like, well, it can't get any worse than this. And then something else would happen. And then I would say that again, and then the next thing I know, I can no longer speak or swallow."
Jake adds: "Things can always be worse — and to not give up and be present. Because I didn't live in the present, I was [living] a fast lifestyle, and I didn't live in a way where I thought of what was truly important in life. I didn't live that way, and now I do, and I think I never would have lived like I do now without this happening.
You just feel caught up in the bullshit and caught up in your work and caught up in whatever. [But] it's really good to take a step back at times and reassess — is this actually how I want to live my life?"
If you're interested in hearing more about Jake's experience, including more intimate details he hasn't previously shared online, he has a new podcast that was released last week called Blink.
Ezekiel Dussault / Via Jake Haendel
Jake now works as a motivational speaker and content creator. He's also created his own app, Ahoi, which is designed to help document what types of accommodations are available at different locations for people with disabilities.
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