Jake’s case exposed an unsettling reality: countless patients may be fully aware, yet locked inside unresponsive bodies—misdiagnosed and dismissed. But just as medicine starts to grasp the scope of covert consciousness, Jake’s experience veers into the uncanny. His consciousness didn’t just endure—it slipped free. Content warning: Drug use/abuse, addiction, medical trauma, death and dying, emotional distress & mature content. Resources can be found on our website, blinkthepodcast.com Blink is part of The Binge - subscribe to The Binge to get new episodes of Blink one-week early and all episodes completely ad-free. Just Hit ‘Subscribe’ at the top of the Blink show page on Apple Podcasts or visit GetTheBinge.com. The Binge – feed your true crime obsession. Find out more about The Binge and other podcasts from Sony Music Entertainment at sonymusic.com/podcasts and follow us @sonypodcasts. Learn more about your ad choices. Visit podcastchoices.com/adchoices . . . . . Hosted and produced by Corinne Vien Co-created by Jake Haendel Original composition by Michael Marguet Learn more about your ad choices. Visit podcastchoices.com/adchoices
Chapter 1: What is Jake's extraordinary medical condition?
Jake is the only known person to survive stage four of acute toxic progressive leukoencephalopathy. That alone is extraordinary and something worthy of medical textbooks. But his survival isn't just about defying one terminal diagnosis. There's more to his story. More unexplained phenomena.
More medical mysteries that challenge what we think we know about the brain and the limits of the human body. And Jake's case is forcing experts to rethink everything. Here's Dr. Brian Edlow, the neurologist who treated Jake at MGH. Dr. Edlow is the co-director of Mass General Neuroscience specializing in comas, disorders of consciousness, neurocritical care, and traumatic brain injuries.
Chapter 2: Who is Dr. Brian Edlow and what is his role in Jake's care?
So I'm a member of the neurocritical care faculty at Mass General Hospital. And in my role as attending physician in the neurosciences ICU, I was in charge of Jake's care when he was readmitted to our ICU in the winter of 2017 for infection and for autonomic storming. One of several hospitalizations that he had during that time period.
So this was before Jake was put on hospice.
Now, it's important to point out that Jake's condition, the cause of his brain injury, was a rare one. It's one that we don't see every day in our ICU here or that any ICU clinician sees around the world. It's the kind of clinician that we go back to the literature to read about and to educate ourselves about to make sure that we're taking the best care of him we possibly can.
But I want to acknowledge that because of the rarity of this condition, there is not a lot known about it in the clinical community. And therefore, we had to be humble and acknowledge certain limitations with respect to our understanding of what might be happening in Jacob's brain.
Dr. Edlow said that when Jake arrived to them, reports from other physicians at other hospitals stated that his level of consciousness seemed to be fluctuating at this time.
And so the diagnostic terms that had been used to describe Jake's current state was fluctuation between the vegetative state, a state of being awake, eyes open, but unaware of oneself in the environment, and the minimally conscious state, a state in which somebody has a slight level of consciousness that can be detected on the bedside exam.
These were the different states that Jake was fluctuating between, the vegetative and the minimally conscious states.
I asked about the bedside exam and what a slight level of consciousness could mean.
So the bedside behavioral exam is always our most important tool for detecting signs of consciousness. We assess somebody's level of arousal or wakefulness. Can they open their eyes? If so, do they do so spontaneously or do they need some stimulation to wake up and open their eyes? In Jake's case, his eyes would open spontaneously, so we knew he was awake.
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Chapter 3: What does it mean to be in a vegetative or minimally conscious state?
So, for example, will you track a stimulus? Will you look toward a voice that's calling your name? And if that is not present, then we will administer an uncomfortable stimulus.
I asked what this uncomfortable stimulus could be. Are they throwing slimy wet rags on people just waiting for an, ew, get this off of me? Dr. Edlow laughed and he said, no, no wet rags.
Sometimes it's a little pinch or a rub to see if somebody will reach for the examiner's hand in a purposeful manner, an appropriate response to an environmental stimulus. Again, the goal is always to avoid discomfort whenever possible. But there are some people for whom the subtle signs of consciousness associated with a minimally conscious state can only be detected with a painful stimulus.
And in those situations, again, we want to avoid pain whenever possible. But if we can detect signs of consciousness with that type of stimulus, it fundamentally changes our understanding of that patient's current level of consciousness and potentially their chances for long-term recovery.
And so that's why it's so important that we do a comprehensive examination every time we assess a patient like Jake in the ICU.
Now, as a reminder, when Dr. Edlow had seen Jake, this was before Jake was put on hospice, Jake had been told time and time again that he had six months to live. He would die by Christmas, and then he would die by New Year's. And there was this suspicion that maybe, just maybe, there were flickers of awareness here and there, brief sparks of life breaking through.
But as this disease continued to progress, Jake's body deteriorated even more, and he was soon assumed to be mostly vegetative at best. Doctors certainly didn't realize he was conscious the entire time.
There were several aspects of Jake's care and his ICU course that were atypical or uncommon. First and foremost was the cause of his brain injury. It's not a cause of brain injury that we see every day in the ICU or that any ICU clinician in the world sees commonly. And for that reason, there were fundamental questions about the mechanisms of injury to Jake's brain that were not completely clear.
Second, there was the fluctuations between a vegetative state and a minimally conscious state, which raised additional questions about why he was not consistently following commands. What was the reason that his level of interactivity was changing from day to day? Then there's the imaging. We saw on an MRI scan a picture of Jake's brain that there was injury to the white matter of the brain.
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Chapter 4: How do doctors assess consciousness in patients like Jake?
The white matter refers to the wires that send the signals from one brain cell to another. So you can think of the brain as being comprised of multiple networks. The outer layer of the brain, the cerebral cortex, contains the nodes of those networks. And those nodes send signals to other nodes within these networks via wires.
Those wires are called axons, and they're coated with insulation, just like any wire in an appliance in our homes. And that insulation makes the wires of the axons look white under a microscope. That's why it's called the white matter. Now, the majority of Jacob's injury was in the white matter, the wires sending the signals. And we could see that on his brain scan, his MRI.
When we look at a brain scan, an MRI, and we see injury to the white matter, the wires that send electrical signals from one brain cell to another, we have to be humble and recognize that certain patterns on a scan might represent different types of injury in different people.
In other words, the same pattern of injury might be associated with a complete absence of electrical signaling in one patient and a partial preservation of brain signaling in another patient, like Jacob. And the way those two injuries might appear on an MRI could be identical. So just because the MRI is the best imaging test we have and we rely on it tremendously, it's incredibly informative.
That being said, like any other test we use in the ICU, it has fundamental limitations.
So an MRI is not the end-all be-all in terms of providing answers in regards to consciousness and the severity of injury pertaining to consciousness. And with this realization that there could be some level of consciousness within Jake, doctors wondered if this injury to the white matter was the reason for the inconsistency in the bedside exams.
Sometimes they felt like Jake was responding in a meaningful way. Sometimes he didn't respond at all. Was this just chance? Or maybe was it because the signals weren't always getting from one part of his brain to the other?
We were concerned that when we looked at his brain function with an EEG, an electroencephalogram, which involves placing electrodes on the scalp and measuring brain waves, the brain's electrical activity, the activity was slow.
It was consistent with the brain function of somebody who had undergone a severe brain injury, and it was consistent with the pattern that we see in somebody who is not conscious. Based on what we observed on the structural MRI, we thought that Jake's brain was essentially disconnected. That's what we believed to be true based on the scans.
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Chapter 5: What challenges do MRI and EEG present in diagnosing brain injuries?
We are not perfect at predicting recovery under any circumstances. And there's always some level of uncertainty. Incredibly humbling information to reflect on. And it highlights the importance of further research into how people recover from brain injury. It highlights how much more we need to learn about the recovery process.
And it also reinforces the point that we need to develop more accurate diagnostic and prognostic tests so that we can give families the most accurate information possible. about their loved one's chances of recovery. Finally, it highlights the importance of accurate communication. We as clinicians need to acknowledge when we are uncertain when we're discussing prognosis with families.
There are types of brain injury for which there have been large studies done about early predictors of long-term recovery. And while we're never perfect, there are some types of brain injury for which we have pretty accurate prognostic models. One example would be bleeding within the brain or intracerebral hemorrhage.
There are other types of brain injury for which we lack accurate models to predict long-term recovery. And so we use our best judgment. We rely on our prior experience, our interpretation of the available tests, in Jake's case, the MRI, the EEG, and most importantly, the behavioral bedside exam and any other diagnostic or prognostic tests that might be relevant.
We integrate all that information and we give families our best estimation of their loved one's chances of long-term recovery. And we usually present a range of possible outcomes. And we try to guide families through decision-making processes with the guiding principle being, what would their loved one want if they could speak to us right now?
I can't help but think of my own family. I've watched close relatives struggle and, in some cases, lose their lives to diseases that strip away the mind, the body, the very essence of who they are. It sparked difficult conversations amongst my family. If we ever found ourselves in that position, at what point would we want it to end? For lack of a better term, when do you pull the plug?
And to highlight what's at stake, this is a life or death fork in the road situation whereby we as clinicians are partnering with families to try to understand whether that individual would want to continue with life-sustaining therapy, which often involves placement of a tracheostomy in a feeding tube,
Or if even the best case scenario for a long-term recovery involves a quality of life that would be unacceptable to that individual, then would that patient want us to transition to comfort-focused care and allow them to pass away peacefully in the ICU?
Okay, so this is incredibly tough. A position that I hope none of us ever have to be in. But honestly, many of us will probably find ourselves in as we care for elder relatives and sick spouses. A terrible, terrible part of aging. But for some, the decision is presented far earlier than what was expected. And this is where covert consciousness comes into play.
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Chapter 6: How does Jake's brain injury affect his awareness and response?
Now that this has been recognized, the question is, how do we provide these types of assessments to as many people as possible. There is growing evidence from a group at Columbia University who's also using task-based EEG to look for signs of covert consciousness in the ICU. They are finding that the presence of covert consciousness early on may predict long-term recovery.
We've known for years that overt signs of consciousness, following a command, giving a thumbs up or sticking out your tongue, when we see that in the ICU, that predicts long-term recovery. And now it appears that covert consciousness may similarly predict long-term recovery. And so this is a transitional moment in the history of our field, critical care and disorders of consciousness.
We have these tools. We have these advanced techniques. Multiple academic and government institutes are now endorsing these advanced tests, task-based fMRI and EEG, for the detection of covert consciousness. Yet very few hospitals around the world have access to these tests.
There was a questionnaire study that was performed by Raymond Hellbach and colleagues out of Austria, an international survey of clinicians around the world who take care of patients with severe brain injuries. And about 5% of them had access to these tests.
So 15 to 20% of patients who appear unresponsive in a bedside exam have shown consistently to be covertly conscious. Yet only about 5% of hospitals have access to the tests needed. Meaning most people in this condition will remain undiscovered. Thought to be brain dead. Utterly horrifying.
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Chapter 7: What uncertainties exist around Jake's diagnosis and prognosis?
We are trying to raise awareness about covert consciousness. We are trying to disseminate these techniques as best we can, sharing our code, sharing our methods whenever possible, sharing resources such that other institutions can do this outside of big academic centers. But even at big academic centers, the access to these tools is currently limited.
So we have a long way to go before every patient and family has access to these clinically relevant tools.
Extremely important work, and work that, if given proper funding, could one day give you or a family member a renewed chance at recovery. I do want to touch on a couple more things in this episode. While doctors struggled to identify meaningful consciousness in Jake, there was something happening that was a major clue of his awareness, at least to Jake. And doctors missed it.
In this wildly unpredictable thriller, Nicole Kidman is the meticulous Nancy VanderGroot, a teacher and homemaker whose picture-perfect life with her community pillar husband, Matthew McFadden, and son, Jude Hill, in tulip-filled Holland, Michigan, tumbles into a twisted tale.
Nancy and her friendly colleague, Gail Garcia Bernal, become suspicious of a secret, only to discover nothing in their lives is what it seems.
So the phenomenon of autonomic storming, and it sounds like a technical term, but the term actually conveys what patients experience. It's a storm of high blood pressure, high heart rate, fast breathing, sweating, sometimes posturing of the arms and legs. And it comes on rapidly and all these symptoms come together and really looks like a physiologic storm.
So Jake was experiencing these events, these autonomic storming events. Autonomic just refers to the part of the nervous system that causes these events to occur. And for the vast majority of patients, these are events that are completely out of their control. They are a result of a brain injury that disrupts that part of the nervous system.
And it's something we treat with medications or we try to prevent.
Now, most of Jake's storming sessions were involuntary, but not all of them.
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Chapter 8: How do medical professionals approach end-of-life decisions in cases like Jake's?
And while we're on the subject of consciousness and unexplained questions, there's something else Jake experienced while trapped inside his body. In moments of heightened emotion, Jake found himself floating, watching from above. He could see himself, the hospital room, the staff, the visitors who came and went. At first, he dismissed these as hallucinations.
He thought that this was the only explanation that could make sense. But as he recovered and he started asking questions, something strange happened. His memories, the details he shared, were confirmed all factually correct. Somehow, a part of Jake had detached from his physical body, allowing him to witness what was happening around him with startling accuracy.
Some call it an out-of-body experience. Others, astral projection. Most scientists would call it impossible. But then again, most of what happened to Jake seemed impossible.
Basically, I got a bird's eye view. Like, my vision left my body and went to the ceiling. And it was like my eyes turned around to look at me, but also could see the entire 360 of the room. And also, I had the ability to, like, zoom in on things. Kind of like a security camera. It was really weird. And I was like... I don't know, just like super rational. And I'm like, well, this can't be real.
Like, what the fuck is happening? And this happened for the first time when I had, and as we all know by now, my visitors were gone. fairly scarce. So when I would have a visitor or something important, this would happen or something I viewed as important. So the first one was with my mother-in-law, Cindy, and it was a really heavy conversation. She was crying.
She kind of came in, pulled the chair. She wasn't like close to the bed. You know, if I'm in bed, she was on the left. She had these black leggings. It's like, black shirt and black sweater. And she had this silver brooch she wore and her pearl necklaces. And I could really zoom in on what she was saying in her emotion and facial expressions. And it was like super, super intense.
And it was crazy, you know, because I could only look at the ceiling. So it's like, how is this? possible. I really thought it was a hallucination for a while. It wasn't until I'm communicating in 2019 with the Megabee, I was like, can I ask you something? She was like, of course, and I was like, did this happen? You came in in your ICU to say goodbye to me, and you were wearing this, and
You were talking about how... I'm so sorry this happened. And I know this wasn't the way you wanted your life to go. And certainly not your life with my daughter, Ellen. And I'm so sorry. And I want to let you know that she will be okay. I'll take care of her. So I regurgitate this, sir. I'm like, did this happen? And it was so emotional for me. I felt like I was crying with you.
And she was like, how could you possibly know that? Yes, I vividly remember that. And I could have sworn you actually shed a tear. Yeah, I wrote about it non-verbally right after that conversation. I was like, whoa, that is crazy because that really happened. That was the first confirmation from, you know, the only other person in the room.
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