10. The Silent Witness

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In 2009, three days before Halloween, a grisly crime stunned the seaport town of Anacortes,

Washington. Mark was known as the dog whisperer of Anacortes.
They soon discovered a story

tangled in obsession. Who was the hunter and who was the hunted? Follow and listen to

Thank you. Whisper of Anacortes.
They soon discovered a story tangled in obsession. Who was the hunter and who was the hunted? Follow and listen to Train to Kill, the dog trainer, the heiress, and the bodyguard on the free Odyssey app or wherever you get your podcasts.
Blink is intended for mature audiences as it discusses topics that can be upsetting, such as drug use, sexual assault, and emotional and physical violence. Content warnings for each episode are included in the show notes.
Resources for drug addiction and domestic abuse can be found in the show notes and on our website, BlinkThePodcast.com. the testimonies and opinions expressed by guests of the show are their own and do not necessarily reflect the views of myself or affiliates of this podcast.
The next few episodes will bring some major revelations, but before we dive in, I want to revisit the core of this story. Jake's medical recovery.
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. The 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.
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 and 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, but the question then becomes, is he aware? Is he aware of himself or the environment? So our goal is to assess somebody's level of consciousness with as little discomfort as possible. And so we start with questions like, squeeze your hand and release it.
Show us a thumbs up. Wiggle your toes.
Stick out your tongue. Basic verbal commands, where if somebody can follow them, it suggests that they are comprehending or understanding language, responding purposefully.
If somebody follows one of those commands, they are conscious. And indeed, there were times where Jake followed those types of commands.
If somebody does not follow commands, then we look for purposeful eye movements. 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.
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. The MRI, the EEG, and most of his exams were consistent with a vegetative state.
In retrospect now, knowing that Jake was conscious and aware of what was happening, even when we believed that he was unconscious, even when he appeared unresponsive on his bedside exam, it's clear that some of those wires must have been functioning. Perhaps not normally, but the signals were getting through to some extent.
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The MRI also showed that there was no injury to the cerebral cortex,

which is responsible for processing and interpreting information,

enabling functions like sensation and perception, voluntary movement, learning, speech, and cognition. So if Jake was conscious, this would mean he would likely be able to hear and feel, think, see, even with his positional eye gaze, but that his brain couldn't quite accurately send signals to the rest of his body to respond appropriately, to speak, to move, to wince and pain.

Now, what is the experience? What is the internal awareness of somebody who has that pattern of brain injury? We don't always know. And more common causes of brain injury, like from not getting enough blood or not getting enough oxygen to the brain.
That's something we see much more commonly in the ICU. But in Jake's case, we didn't really understand what had caused that injury to the wires.
And so there was a lot of uncertainty about what this meant for his current state of consciousness. What was he experiencing in his mind, even if he couldn't express himself? and what it meant for long-term recovery.
Those were fundamental questions that we had a hard time answering. We did not fully understand the underlying mechanisms,

the nature of his brain injury. And we still don't to this day.
There just hasn't been enough people

like Jake who have had this type of brain injury for there to be large studies to give us the understanding of what the mechanisms of injury are and what the expected long-term recovery is. Dr.
Edlow has said it himself. There's no clear answer to what caused Jake's injury.
Toxic luchoencephalopathy is rare, and its origins aren't fully understood. It's believed that inhalation of toxins can lead to this diagnosis.
And in Jake's case, doctors suspected heroin played a role, possibly due to a contaminant in the batch that he'd been smoking. And when he was first diagnosed, Jake recalls that the hospital actually requested a sample of his stash to be brought in for testing.
And he remembers discussing this with Ellen, and she said no. She would not be bringing in a sample.

Okay, so what does all of this mean in the medical world?

And for the many people out there who have loved ones in similar situations,

in comas or with traumatic brain injuries,

with cognitive and physical limitations that suggest little to no consciousness.

Now knowing of Jake's case, that he was aware the entire time, despite what the world's best brain imaging technology showed, how can we proceed with ever giving any sort of definitive medical suggestions to family members? 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? Ooh, 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. Dr.
Edlow mentioned that there are many scenarios where the bleeding and type of brain injury gives doctors a pretty good guess at the chance of recovery. But there are also cases like Jake, where consciousness and recovery isn't so clear.
Dr. Edlow has dedicated much of his time to finding the answer to this question, how do you know if someone is conscious when available testing suggests that they are not? And how can Jake's case change future research? So I recall being informed by a colleague and friend, Dr.
Ron Hirshberg, that Jake was fully conscious, independent, living alone, that he had been talking with Jake, and that they were planning to do a special for CBS. And I was astounded.
I mean, breath taken away, completely in shock, had not heard of what had happened with Jake for quite some time, and took a few moments to kind of process this information and let it soak in.

And it's truly remarkable that an individual could go through that, being conscious, being aware, but knowing that those around him did not realize he was conscious, can only imagine the loneliness, the agony of being in that state. And to have lived in that state for a prolonged period of time, again, the strength of character that would be required to get through that experience, and now to be a happy, upbeat person, and to be able to grown and learned from that, it's, again, the word that comes to mind is just inspiring.
And it's a testament to the human spirit. It makes us as clinicians want to do a better job to make sure that we support people like Jake in the future, both during the time of their injury in the ICU and with respect to their long-term recovery.
And it gives us a sense of how much more we need to learn and how much work we need to do to advance our field and to improve the accuracy of our diagnostic and prognostic tools. This reminds me of those nurses who gossiped over Jake, one casually mentioning that he was brain dead.
And it makes me wonder, how many doctors, nurses, and medical staff have heard Jake's story and reconsidered the way they speak around their patients?

Because the truth is, you never really know who's listening. And a single comment could be a glimmer of hope or the crushing blow to someone with locked-in syndrome.
multiple studies both here at mass general and in other labs around the world, have shown that 15 to 20 percent of people with severe brain injuries who appear unresponsive on their bedside examination, they don't show any evidence of awareness of themselves or the environment, 15 to 20 percent of these individuals are covertly conscious. Did you catch that? 15 to 20% of people who are completely unresponsive in a bedside examination with traumatic brain injuries, who could easily be presumed vegetative or brain dead, are actually aware, stuck in their own bodies.
15 to 20%. That That is a hard percentage to swallow.
But, I will say, for many of these individuals, there are other ways of identifying this awareness. If they do a task-based functional MRI or EEG, where we ask them to imagine opening and closing your hand, or imagine swimming or playing tennis, there are a variety of different tasks that have been used.
15 to 20 percent of these people will show us that they are volitionally modulating their brain activity. They are purposefully responding to that command and you can see their intent, their purposeful response with functional MRI or with EEG.
So what do we call this? What is the diagnosis for this group of people?

The term covert consciousness is the most commonly used term in our field.

The basic idea is that they are more conscious than we can see on their bedside exam.

Terrifying.

And even more terrifying when you realize that an EEG and an MRI

could expose this covert consciousness in one patient,

but for a patient like Jake, show nothing. 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 Helbach 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.
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. No matter if it's a major engine repair or your first time swapping your windshield wipers.
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Exclusion supply. 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 swarming sessions were involuntary, but not all of them.
We were under the impression that they were completely outside of his control. But now in retrospect, he has shared with us that he had some volitional ability to control the events.
In other words, he could rev up that part of his nervous system in a purposeful manner to get his heart rate, breathing, and blood pressure to accelerate, and to thereby get clinicians to come into his room to attend to him. That is a truly remarkable phenomenon, the likes of which I have never heard of before.
I have never heard of an individual being able to control his own autonomic storming events. And the fact that he was doing so to get more attention from the clinical team and to have nurses come and check on him, it just speaks to the profound loneliness and difficulty of being in a situation like that and the lengths that an individual would go to to have care provided to them.
Jake could set these events in motion, but he also had no way to stop them. It was a massive risk, a painful, terrifying gamble, forcing his body into a state of panic just to get the help that he needed.
It's very, uh, it's touching, it's also heartbreaking to think that that was the way Jake could get people's attention. Um, it's hard to imagine what that must have been like.
I would definitely pass up, but I knew there was a chance I could die. And so I would start to have these conversations.
Like, oh, calm yourself down. Calm yourself down, Jake.
You gotta calm down. You gotta calm down.
One person started noticing a pattern. During these storming episodes, Jake seemed to calm down when others were around him.
An unmistakable sign of awareness, right? And the person who noticed? His father, DeVron. I mean, he was hooked at that time.
He was hooked up to every gadget in the hospital. You know, the monitor this and monitor that.
And I remember when he would be storming, I'd be watching the heart rate monitor and just like seeing it over 200 beats a minute. I'm like, I'm hoping this helps.
And then I'd rub his legs a certain massage in certain ways and the heart rate would drop. So I'm hoping I've got something to do with that.
I said, you know, I hope it doesn't hurt. He said, yeah, he remembers me doing that.
It did help. We all were doing our best to understand what was happening.
We all were doing our best to counsel Jake's family about the range of possible outcomes and what the future might hold. But I think it was not a likely outcome in any of our minds that Jake would have the incredible recovery that he has had.
And again, that's a testament to Jake's resilience, his strength of character, the incredible obstacles that he has overcome every step of the way. And it's a tribute to the human spirit that Jake has been able to regain his functional and his cognitive abilities.
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 security camera it was 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 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, this, 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 super super intense and it was crazy you know because i could only look at the ceiling so i was 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 mega b i i was like can i ask you something she was like ofee, 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 like 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 but then non-verbally right after that conversation.
I was like, wow, that is crazy because that really happened. That was the first confirmation from, you know, the only other person in the room.
Jake asked Eli about a time when he entered the room and had a conversation with him, describing Eli's exact outfit, and Eli confirmed everything to be an accurate depiction of what happened that day. Another presumed hallucination was of a doctor in a bow tie.
This short little guy who wore the same bow tie and like, you know, no disrespect bow ties, my uncle Adam wears bow tie, so I'm not shitting him bow ties. But this guy's bow tie was like kind of goofy.
And with my sense of humor and sarcasm, even being trapped in my own body, I just kind of made fun of his bow tie. And I could see it from the ceiling.
Once Jake was on his path to recovery, the memory of this doctor and his goofy bow tie popped into his mind again. And obviously, I'm very connected with the people.
Maybe it's not obvious, actually. I'm, you know, a pretty social guy, and I stay in contact with people that were involved in my care.
And I did bring this up. I was giving a talk to the neuro ICU, and there was confirmation that this short little man with a bow tie did enter my room on occasion, and I was like, oh, validation.
These things can happen, apparently. Which, by the way, I was total skeptic, and before this happened to me, if someone was telling me that they were in a coma, frozen, but could see the whole room, I'd be like, okay.
Like, yeah. Me too, when I used to take LSD.
Life is strange. And when we find ourselves in the middle of something so bizarre, so improbable, it's easy to question our own sanity.
Are we the only ones going through this? Are we completely alone? I take comfort in knowing the answer is no, definitely not. On those countless, sleepless nights with my baby, it helped to remind myself that somewhere in that exact moment, other parents were doing the same, holding their babies, fighting that same mental battle.
For Jake, well, sure, some of what he's been through might resonate with others. But the combination of events?

The sheer improbability of it all?

I think, in this case, Jake may be the only one in the universe.

Reality is stranger than fiction.

And next week, we'll uncover the answer to the question we've all been asking.

What strange admissions did Jake overhear while he was trapped in his own body? Thank you for listening to Blink. This podcast is hosted and produced by me, Corinne Vien, alongside my co-creator and survivor, Jake Handel.
Our original music is composed by the brilliant and talented Michael Marget. We're so grateful for your support.
If you enjoyed this episode, please consider rating, reviewing, and sharing this story with others. For additional resources, updates, and behind-the-scenes content, visit our website, BlinkThePodcast.com.

Blink will return with a new episode next week.

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