2: Locked-In

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. Any individuals mentioned in the episode are presumed innocent until proven guilty in the court of law unless explicitly stated otherwise.
Fear. It's a primal emotion that has been an inseparable part of the human experience since the dawn of our existence.
It is both a protector and a tormentor, guiding us away from danger while often chaining us to our anxieties. Fear keeps us safe.
Yet, when it comes to our health, fear does not necessarily aid in our survival. You have a rare disease that's eating away at your brain.

You're given six months to live. And no, this is not your search results on WebMD.
But being told this is certainly scary, and it's a reminder of just how little control we have, and a reminder of the impermanence of life, the fragility of our bodies. Sometimes diseases cannot be conquered And fear cannot be overcome

Dark, I know, but this is what happened to Jake. Just weeks earlier, Jake's life was normal.
Well, I mean, as normal as it could be. He lived at home with his wife, he went to work every day, he spent time with friends and family, he took romantic getaways, and traveled frequently.
But Jake was also an addict and his addiction resulted in an extremely rare brain disease, a death sentence. His body shut down at a rapid speed.
A few weeks was all it took for Jake to go from walking and talking to relying on others to carry him and make all the medical decisions. Jake and those around him struggled to figure out what to do for him in the short window of time they had before Jake would inevitably become paralyzed, slip into a coma, and die.
Losing Jake. Now, that was a fear that was shared by everyone around him.
Or so he thought. This is Blank.

I'm your host, Corinne Vien.

I'm Jake Handel.

This is my story. Thank you.
I was becoming horribly contracted. I couldn't walk to the bathroom.
I had to be carried. I was in extreme pain, so it wasn't like some rosy picnic eating blueberries.
My wife, Ellen, is advocating pretty strongly with the therapist and coming up with these ideas, strategies. She wouldn't accept there's nothing.
She's like, what about this? She would like look up things online. And she found Spalding Rehab.
And I never heard of Spalding in her life. And she was advocating to get me into Spalding.
Spalding Rehab, the third best rehabilitation hospital in the U.S., which just so happens to be in Boston where Jake lives. But Jake wasn't able to get into Spalding quite yet.
At this moment in time, he was being cared for by Fairlawn Rehabilitation Hospital. And over the next few months, Jake would transfer from hospital to hospital.
He'd spend time in different rehab centers and even spend time at home. Throughout this time, his wife continued to advocate for him.
She had this great ability to sense what I wanted. I thought that was amazing, this telepathy connection.
And she could just know things when no one else knew things. She always decorated my room pretty festively, tried to do like fun things.
She brought a bunch of her girlfriends over and they brought some karaoke machine. They were like singing karaoke for me.
It was lame, but it was like, it's kind of cool. I remember some family coming to Fairlawn,

and particularly my Uncle Michael.

He was someone I was always very close to

and had a partying relationship with,

among other things.

Shout out, Uncle Mike, what up, big dog?

He had like a pint of Smirnoff vodka with him. This pissed my wife off so much.
Even though I was in like no place to, you know, drink, everything has to be kept away from Jake. So there was like this kind of beginning of certain people aren't allowed around Jake anymore.
I have to say, I saw a lot of myself in Ellen in this moment. Your husband is dying in front of you.
He's given six months to live, many of which he will be in a coma. You're trying your best to cope and to find any treatment to slow down time.
And then you have to witness people stride into the hospital room for an hour or so, and so clearly not take Jake's safety seriously? Hell no. I think I would likely ban people too.
It had only been a month since Jake's diagnosis, and he was still declining rapidly. His speech was slurred, his body began contorting, and he was unable to walk to the bathroom without two people on either side of him.
But Jake continued to work diligently, giving it his all in his daily physical therapy and speech therapy sessions. Despite the hours of daily rehab, Jake didn't qualify with his insurance to stay at Fairlawn.
He needed to demonstrate that he was making progress. But in Jake's case, progress did not mean improvement.
Rather, he worked to slow the progression of the disease to delay the inevitable. When given the option between moving to a nursing facility or going into at-home care, Jake and his wife decided that they should have him transferred to a nursing facility.
In retrospect, if this disease didn't kill Jake, some of the things that could happen at these facilities just might. It was called Parsons Hill, referred to as Parsons Hell.
I was definitely concerned. I get put on a TBI floor for a traumatic brain injury.
And there were a lot of drug addicts and people that yelled a lot and freaked out. I saw immediately what they called it, Parsons Hell.
And all the while, I'm deteriorating even more. I couldn't really pee, even though I felt the urge.
My fingers were curling in, my ankles were stretching out, and I was starting to have these contractures, which are very painful. It feels like someone's pulling and molding your bones and tendons like clay.
They were adding about five medications per week to my care plan. Stuff for anxiety, stuff for pain.
Kind of like heavy narcotic pain meds that I thought were fun. Just like this whole array of medicines to treat different symptoms I was having.
Nothing was working. It was the 4th of July.
At this point, I need to hit the nurse call button for every single thing I needed, but this person's hell, and they're under your staff. No one's coming in, and I'm really thirsty.
I'm able to sit up on the side of my bed, and there's a cup of water on the bureau, and I go to reach for it, and I have no stability, and I just fall like a sack of potatoes, right? And I hit my head on the bureau, and I slam up the floor, and everything went black. I thought I'd die.
Apparently, it was like a bloody mess. All I remember is my eyes kind of like I'm too, and the sky's over me.
He's like, you're okay, you're okay, you're going to be okay. And I'm like, am I dead? It was such a weird sensation in my body of this like tingling and everything was numb.

And it was like my body was humming.

And now my wife and my dad happen to be walking in as all this is happening.

I remember she comes into the room all kind of gung-ho and happy and immediately is like, What? Oh my God! How did you let this happen to my husband? Where's the ambulance? An ambulance did arrive, and it transported Jake to a new hospital. This time, he was at UMass Memorial Medical Center.
All I know from that moment forward, my left side was never the same. It was kind of numbish and not responding.
Not like I throw the ball too much nowadays, you know. We can show you guys on camera how that would go.
I'd aim for a curtain's head and I'd break that window. Strong-willed and insanely amazing advocate wifey was like, you're not going back there.
Makes sense. It was likely in this moment that his wife lost the trust of these types of medical facilities because the next move that they made was to transfer Jake home.
Medical staff would come and they would aid in Jake's care, but really, his wife and his dad were his primary caretakers, with a lot of the weight landing on Ellen's shoulders. A terribly difficult responsibility to take on, but at least she would have eyes on Jake and know that he was safe.
It was hard because I was a full-time job. Right, being a caretaker.
I was two people's full-time jobs, and I could have been a team of six full-time jobs. So at this point, Jake was beginning to have difficulty swallowing.
His water had to be thickened to prevent aspiration. And when Jake tells me this, he grimaces while remembering the thick water, describing the consistency as somewhere between honey and rubber.
He also had to take about 50 medications, and preparing his medications and his food took multiple hours each day. Jake's medical issues continued to consume him, everyone around him, and his pain was just constant.
But what hurt the most was the life that he was losing with his wife. I was trying to put on the best attitude, really for my wife and other family too, but really for the wife because she was giving up really everything, her late 20s, to take care of me.
I was getting emotional.

I was getting sad, depressed about how my life ended up,

how it was going to end,

how much my father and my wife

and how sad other family was about this. And my body was becoming disfigured in front of my own eyes.
I was just not really in a good headspace. I also felt like I was just like always asking my wife to do something else for me.
I felt like I was asking too much. I also wanted to have nice evenings.
I obviously wanted romantic connection and sex and kissing and that kind of stuff,

which in this situation was very hard.

Now receiving at-home care, Jake was mostly bed-bound.

He wasn't able to tolerate sitting in a chair for more than an hour without being in excruciating pain.

Despite this, he still tried to nurture his emotional and physical connection with his wife. I'd verbally say, like, come live with me or, you know, whatever.
She'd be like, I just feel like I'm going to hurt you, and I don't feel comfortable. I get it, you know, and obviously I'm not gonna force this upon, you know.

I remember the last

time I actually had sex with her.

I want to say there was like

before Parsons Hill

and... So it was in the hospital?

Yeah, she was like, I can't do this.

I can't do this. I feel like I'm

raping you. And I'm like,

but

you're not. Like, I feel like I'm hurting you.
I feel like I'm raping you. And I'm like, but you're not.
Like, I feel like I'm hurting you. I feel like I'm raping you.
I imagine it would be hard to be a caretaker and to spend so much time just trying to keep someone alive and keep someone safe and comfortable and then to switch and view them sexually and romantically. I'm sure it was very hard.
It was hard for her. It was very hard for me.

But I really was in so much pain.

My skin was burning.

Simple touch could hurt.

She would only touch me with a glove.

I'm not going to say I didn't enjoy it or anything,

but it also felt to me like she felt it was another one of her tasks. It's like, get this out of the way.
It would make me tense my body up, and my fingers were approaching close to my palms, and my nails would start digging in, and spasms, and my contractures would hurt. Okay, so maybe a physical connection of this kind was not the best idea.
But Jake told me that he wouldn't have said no, that it hurt too much, because he really wanted that familiarity. He wanted something to feel remotely normal, even if it wasn't.
Everything in Jake's life was different. His body was a stranger to him, his relationship

with his wife irrevocably changed, and he continued to progressively lose his ability to speak. Needing more care, Jake's mother-in-law utilized her connections to connect Jake with Dr.
Naga Kapal Vena. Dr.
Vena is the chief of neuroimmunology and neuroinfectious diseases at Massachusetts General Hospital, MGH. Dr.
Vena is a world-renowned neurologist and an expert in neuroinfectious diseases, and he is one of the nation's leading experts in neurological complications. So, a good guy to get in with.
Within a week, Jake had an appointment. My mother-in-law and wife really ran the conversation.
and again my wife at the time was an appointment. My mother-in-law and wife really ran the conversation.
And again, my wife at the time was an excellent advocate and she was getting all these ideas to ask Benna. And it was about an hour of them just like talking, me just kind of laying in a stretcher.
She's like, do you have any questions for him and i i kind of like come closer because i can't talk loud and i go ask him if i'm going to die she goes he wants to know if he if you think he's going to die and i'm looking at this man right in the eyes I was studying his facial expressions to kind of like gauge if I thought he was telling me what I wanted to hear or not he looked puzzled a genuine puzzled look of like why would this guy even ask me such a thing? And then like went to like, no, I don't think so. The way he answered and knowing that he's like the world's expert, I was just like, oh, wow, maybe, maybe I'm not.
It was now October of 2017. Jake's birthday was at the end of the month on the 31st, Halloween, and his wife had planned a special outing for him.
Her friends, family, and two nurses gathered at her mom's house, and together they carried Jake down the lawn and into a boat. This was going to be Jake's last day outside before he had to be confined to a hospital room until his death.
Jake couldn't say much at this time, but he didn't really feel like that mattered, because everyone around him spoke so cheerfully, and it was so clear that they were doing everything that they could to create a wonderful memory for him that day. But Jake also remembers how much pain he was in.
How hot the sun felt on his skin, how struck he was by the kindness of this gesture, and how sad it felt at the same time. I can still, like, say three-word sentences.
Like, I'm, like, talking like this. It's very hard for me to get out.
The day after Jake's 29th birthday, he was admitted to the hospital once again, this time to get a tracheostomy to help him breathe. There had been some debate and some reservations within Jake's family as to whether they should go forward with this surgery, the tracheostomy, but with the threat of Jake potentially not being able to breathe, his wife, who was his health care proxy, opted to have it put in.
Only three weeks had passed since Jake first met Dr. Vena, and at this point, Jake was no longer able to communicate verbally at all.
Things were moving fast. Do you remember the moment that you could no longer speak? No, but I remember it said to my wife, I said, I love you.
So your last words spoken were, I love you. Yeah.
Now in November of 2017, just six months after his diagnosis, Jake became completely paralyzed. Slipping into a coma would be right around the corner, should this disease progress like it had in every other known medical case.
And once that happened, he'd die. Unless, of course, Dr.
Venna was right. And not to spoil the story, but you are hearing Jake tell his own story.
But this story isn't just about the miraculous recovery from a disease that was thought to be incurable.

There's a lot more to it.

And the cause of Jake's disease may not be what the doctors thought it was.

Did Jake do this to himself?

Or did someone else?

Now paralyzed, Jake had a positional eye gaze. His eyes moved involuntarily.
Most of the time, he was looking up at the ceiling, and Jake had been moved from his home and transferred to Spalding Rehabilitation Hospital, which was the hospital that Jake's wife had first set her eyes on shortly after they learned of his diagnosis. The clock in Jake's hospital room was out of his sight line, so he rarely knew what time it was.
When nurses came in to turn him, he would take the opportunity to look around and see other areas of the room, try to get a better sense of his surroundings. And throughout this time period, Jake was transferred back and forth to various hospitals, to various care facilities, and he was rarely told where he was going.
Sometimes a hospital monitor or a branded calendar would enter his sightline and he would be able to read where he was, which hospital, which department. The reason Jake was transferred so frequently was because he began to experience what is called autonomic storms.
Autonomous storming, that's like trying to drive a car without gas. For me, I couldn't regulate body temperature anymore.
I'd spike fevers of 106, and then I'd go down to hypothermia of like 95. So I'd be in that range back and forth.
I would have tachycardia and triple tachycardia. I would spike over 200 beats per minute.
I was diaphoretic, which means I'd be dripping sweat. I felt like I was running a marathon, but I was paralyzed in bed.
I'd have posturing, severe spasms. I would at times look like I was possessed.
Like I had an exorcism in my back. Exorcism of Jake Handel.
Yeah. There was a demon inside me.
A constellation of symptoms would happen. And these storms can last anywhere from four hours.
Mine would last 16. They would stop when I would pass out, and I would think I would die.
I wasn't sure every time. Because storms, autonomic storms, are actually universally fatal.
And I stormed for a year. I survived, but I would pass out from my heart beating so fast.
Then I wake up in a new hospital room, sometimes transferred to the ER, nice bath, Spalding, back to MGH. Every time they transferred me, it would set me into a storm.
Do you know how many times this happened to you? I would say from November-ish 2017 to February 2019, I stormed every day. The rapid change in body temperature was wild.
I remember they were bringing in a team of like eight people. They're like, oh my God, we got to get this.
Tempt down his brain, it's going to melt. They get me in a Hoyer lift.
You know what a Hoyer lift is? No. A Hoyer lift, if you're bedbound and can't be moved, it's like a pad that goes under you that has all these like tethers.
And they bring this machine. It's almost like a human forklift.
I'm picturing when they save the whales and they like transport whales back into. I'm like, save Willie.
Free Willie. Free Shaky.
Free Shaky. They put me in a heating blanket.
It was like ridiculous. And then I start to notice no one's really talking to me.
Nurses, doctors were coming. Hi, I'm Dr.
Harrell. I'm here to blah, blah, blah, blah, blah.
Hi, I'm your nurse, Jan. How are you doing today? I'm here to change your IV.
All that stopped. And people come in and work and they wouldn't say anything.
There are two nurses that are coming in to clean me up, because obviously when you're paralyzed and bed-bound, you just kind of go to the bathroom whenever. And they're coming in to, like, clean up this situation that I'm sure wasn't pretty.
One's on either side of my hospital bed. I can only see them when they, like, lean in.
So I kind of have a sense of who's there. And they're talking to each other, not to me.
And one of them goes, oh, my God, I got to tell you about this really awkward hookup I had last night. And the other one gets giggly and is like, alright, alright.
Maybe we shouldn't talk in front of the patient though. She goes, oh, don't worry, he can't hear you, he's brain dead anyway.
And I'm like, what? They think I'm brain dead? I mean, I'm sitting there, I'm like, this is the best crosstalk I've heard all month.

This is great.

I was like, totally entertained.

Yeah, exactly.

Right.

I just start to like kind of panic and freak out.

Like, wait, am I branded?

Could it be?

Is that possible? How can I interpret what they're saying? How do I remember my childhood? How am I thinking about my mom? How do I remember my phone number? I'm like kind of mind-blown, scared, freaking out. And immediately I'm on a mission.
I gotta let them know I'm not brain dead. Did the scans show that you were brain dead? They did a bunch of EEGs and stuff to kind of figure out how much brain function and activity was.
My MRI showed this catastrophic brain injury. The white matter was gone.
There was no possible way any neurologist thought I was with it at all. Vegetative at best.
Disconnected from all reality. I knew that I lost everything in my brains and muscle.
I should exercise my muscle. So I started talking to myself about everything, doing geography, thinking about places I visited in the West.
What's the capital of that? What's the capital of Hungary? Where was all put it in? What was that? And I'm thinking about all kinds of random crap when I wasn't storming or nearly dying to exercise the brain to keep it sharp. And that, my friends, is the beginning of locked-in syndrome.

Locked-in syndrome is a rare neurological disorder characterized by paralysis of voluntary muscles.

People with locked-in syndrome remain fully conscious, alert, and have their usual cognitive abilities, but they're trapped in this pseudocoma.

In many cases, people with locked-in syndrome are still able to control their vertical eye movement, so their eyes moving up and down, and they can communicate using assistive technologies.

There is a form of locked-in syndrome where the body experiences complete paralysis, including the loss of eye movement.

But healthcare providers can tell that a person still has cognitive function by examining cortical function with an EEG.

Basically, measuring a person's brainwaves to see if they're still thinking and reasoning and still aware of what's going on. But Jake's EEG did not suggest that he had any sort of functioning cognition whatsoever, and nobody knew that he was still aware.
Death was on the horizon, and it was looking like he'd die alone, isolated, stuck in his own mind, in a barely functioning body, just existing in the background of others' lives. In January 2018, Jake was transferred once more back home, this time to receive hospice care.
At home, Ellen managed his care, she managed their home, who had access to Jake. And so the visitor list may have started getting smaller and smaller after his Uncle Michael's visit to the hospital with that bottle of vodka, but now the list was extremely small.
She slowly disconnected me from every person I knew. It started with friends because her reason was there were bad influences.
In reality, I had several groups of friends. Friends, no-go, bad influences.
Then it started with extended family. Slowly moved to anyone in my family she didn't feel was, quote unquote, a good influence or helped me the right way or helped her help me the right way or whatever reason.
Jake recalls a few painful memories while he was in hospice, being cared for at home by his wife and his dad, and occasionally a few other relatives who came and tried to help. My sister would come over, and she'd be like, what can I do to help? And then she'd do something for me, and Ellen would kind of snap at her and be like, you're not doing it right, just leave.
People wanted help, but no one wanted to get verbally abused. If it wasn't her way, then get the fuck out.
As someone who is freshly out of postpartum depression and anxiety, I also have to say I found this part extremely relatable because that was totally me with my baby. Who held him? How they held him? What if he overheated when they held him? What if they breathed too closely to him? What if I missed a hunger cue? What if he suddenly stopped breathing in their arms? Just a million worries.
And I mean, it was absolutely crushing. It still feels crushing thinking about it.
And the only way that I could get through those beginning weeks and beginning months was to be extremely controlling about everything. Because honestly, I felt like I'd lost all control.
I was desperately searching for some predictability and security, so I get it. But really, when I look back on it, it was more about helping me, not really the child that I was caring for.
So perhaps Jake would have benefited from having some other helping hands around, even if they did things slightly differently. While many family members pulled back to avoid any further conflict, Jake's half-brother Max did not shy away from trying to help, and it did contribute to further conflict.
Jake remembers hearing his wife and Max get into more than one screaming match, all while Jake is just helplessly paralyzed listening to the arguments from inside of the same home. Jake actually remembers hearing a fist fight between the two of them, a fight that resulted in Max's arrest.
I want so bad to just be like, guys, stop, stop. I can't say anything.
I can't move. Can't even cry.
I just am there. And at this point, that was the point where I was like, just put me in a nursing home.
This is too much for everyone. Let me, let me die.
While his wife and father were the primary caretakers, Jake's dad, Doran, still worked part-time as a delivery driver. Doran made sure to schedule his shifts around the at-home care schedule that Jake's wife had created, a schedule that was pretty rigid, and Doran did find it pretty difficult to manage both schedules.
My dad, he was getting berated by her a lot, getting calls while I was at work, do this, pick up this. And by the way, go to the pharmacy and pick up my meds.
She was the boss. I think my dad was probably like, fuck this, you know? On Chinese New Year, Doran attended a staff party at the restaurant where he worked, the restaurant that he drove delivery for.
They had set out a mouth-watering spread, and Doran was really excited to have a chance to relax a bit, to socialize, to eat some free food. but he wasn't supposed to stay long because he had a 12-hour shift scheduled right after this to care for Jake.
I just remember her footsteps, boom, boom, boom, boom, storming around the house, making calls on speakerphone to my dad, it going to voicemail. Leaving messages like, where the fuck are you? You're 45 minutes late.
So enraged. And then I hear the door open.
And I hear footsteps coming. And I hear my wife screaming at him, screaming.

And I hear my dad going, why are you so mad? Just, I'm here, sorry, I'm here. And then I hear, are you drunk? You smell like alcohol.
And then I hear, you're strangling me. You're strangling me.
And then I hear a bottle pop, not like a glass bottle breaking, like a two liter Coke bottle being boffed off someone's head. And 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 like, like what, what or 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.
And then I hear more storming around the house, bathroom door slamming, and my wife calling 911 and saying, my father-in-law just tried to kill me, tried to strangle me. And that's all I know.
I did not see my father ever again or hear anything about him again or anyone in my family ever again. So the voice that said, why did you do this? Do you remember whose voice it was? This is my dad.
Yeah.

This feels like a plot of a thriller.

Man trapped in his body overhears a crime and must piece together what happened.

Only this isn't a Stephen King novel.

This is Jake's reality.

He just overheard an assault and attempted murder by the sounds of it.

But who pushed who?

All Jake can do is lay there and wait for the next clue. Thank you for listening to Blank.

This podcast is hosted and produced by me, Corinne Vienne,

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- story with others. For additional resources,

updates, and behind-the-scenes content, visit our website, blankthepodcast.com.