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. 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 tormenter, 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 getaway, and he 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 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 Blink. I'm your host, Corinne Vien.

I'm Jake Still, this is my story. 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 dozy picnic eating strawberries. My wife, Ellen, is advocating pretty strongly with the therapist in coming up with these ideas, strategies. She wouldn't accept there's nothing. She was like, What about this? She would look up things online. She found Spaulding Rehab, and I never heard of Spaulding in my life. She was advocating to get me into Spaulding.

Spaulding Rehab, the third best rehabilitation hospital in the US, which just so happens to be in Boston, where Jake lives. But Jake wasn't able to get into Spaulding 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 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 fun things. She brought a bunch of her girlfriends over, and they brought some karaoke machine, and they were singing karaoke for me. I was laying there It was lame, but it was like, it was 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, shared her, Uncle Mike, what up, big dog? He had a pint of smear enough vodka with him. This pissed my wife off so much. Even though I was in no place to drink, everything has to be kept away from Jake. So there was this beginning of certain people aren't allowed around Jake anymore.

I have to say, I saw a lot of myself and 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 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 person's health. 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 why they called it person's health. 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 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 this whole array of medicines to treat different symptoms I was having. Nothing was working. It was the fourth of July. At this point, I need to hit the nurse call button for every single thing I needed. But this person is hell, and they're on 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 slumped the floor and everything went black. I thought I'd die. Apparently, it was like a bloody mess. All I remember is my eyes, like I'm two, and this guy's over and 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 tingling and everything was numb. And it was like my body was humming. And now my wife and my dad happened to be walking in as all this is happening. I remember she comes into the room all gung-ho and happy, and immediately it's 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 U Mass Memorial Medical Center.

All I know from that moment forward, my left side was never the same. It was numbish and not responding, not like I throw the ball too much nowadays. We can show you guys on camera how that would go. I'd aim for a person'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 team of six full-time jobs.

At this point, Jake was beginning to have difficulty swallowing. His water had to be thickened to prevent aspiration. 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 my I was just 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 stuff, which in this situation was very hard.

Now receiving at-home care, Jake was mostly bedbound. 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, Come out with me, or whatever. She'd be like, I just feel like I'm going to hurt you, and I don't feel comfortable. I get it. Obviously, I'm not going to force this upon you. But I remember the last time I actually had sex with her. I want to say that was before Parsons Hill.

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 I'm raping you. And I'm like, But you're not. 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 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. I skin was burning, simple touch could hurt. She would only touch me with the 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 look lose his ability to speak. Needing more care, Jake's mother-in-law utilized her connections to connect Jake with Dr. Naga Gopal Venna. Dr. Venna 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 an appointment.

My mother-in-law and wife really ran the conversation. Again, my wife at the time was an excellent advocate, and she was getting all these ideas to ask Fana. It was about an hour of them just talking, me just laying in a stretcher. She's like, Do you have any questions for him? I come closer because I can't talk loud. I go, Ask him if I'm going to die. She goes, He wants to know if you think he's going to die. I'm looking at this man right in the eyes. I was studying his facial expressions to gage 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 went to like, no, I don't think so. The way he answered and knowing that he's 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 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 say three-word sentences. I'm talking like this. It's very hard for me to get it 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 in every other known medical case. And once that happened, he'd die. Unless, of course, Dr. Vena 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 Spaulding 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. 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 sight line, 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.

I don't know what storming. It'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 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. I had an exorcism in my back.

Exorcism of Jake Handle. Yeah.

There was a demon inside me. A constellation of symptoms would happen. These storms can last anywhere from 4 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. 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, in the ice 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 engine body temperature was wild. I remember they were bringing in a team of eight people. They're like, Oh, my God, we got to get his temp down. His brain is going to melt. They get me in a horror lift. You know what a horror lift is? No. A horror lift, if you're bed bound and can't be moved, it's like a pad that goes under you that has all these tethers. And they bring this machine. It's almost like a human forklift.

I'm picturing when they save the whales and they transport whales back into- Yeah.

I'm like, Save Willy. Free Willy.

Free Shaky. Free Shaky.

They put me in a heating blanket. It was ridiculous. Then I start to notice no one's really talking me. Nurses, doctors were coming, Hi, I'm Dr. Harrell. I'm here to blah, blah, blah, blah, blah All that stopped. People would come in and work, and they wouldn't say anything. There are two nurses. They're coming in to clean me up because obviously, when you're paralyzed and bedbound, you just go to the bathroom whenever. They're coming in to 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 lean in. So I have a sense of who's there. And they're talking to each other, not to me. And one of them was, 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, All right, all right. 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 cross-talk I've heard all month.

This is great. I was totally entertained. You got the two. Totally entertained. Yeah, exactly. I just start to panic and freak out. Wait, am I it? 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 got to 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 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 muscle. I should exercise my muscle. So I started talking to myself about everything, doing like geography, thinking about places I visited in the best. What's the capital of that? What's the capital of Hungary? Where What about she? What was that? What was that? I'm thinking about all kinds of random crap when it 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 health care providers can tell that a person still has cognitive function by examining cortical function with an EEG, basically measuring a person's brain waves 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 function in cognition whatsoever, and nobody knew that he would 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 I'm necessarily with extended family, slowly moved to anyone in my family she didn't feel was a good influence or helped me the right way or helped her help me the a 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? Then she'd do something for me. Ellen would snap at her and be like, You're not doing it right. Just leave. People wanted to 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. 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 different recently. 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 fistfight 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. I 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 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 he 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.

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 mouthwatering 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 to care for Jake.

I just remember her, foot steps, 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. So enraged. And then I hear the door open. When 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 boughed 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, 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 Niinal, and one 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 yet.

So the voice that said, Why did you do this? Do you remember whose voice it was?

It was 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 it. But who pushed who? All Jake can do is lay there and wait for the next clue. Thank you for listening to Blink. This podcast is hosted and produced by me, Corinne Vienne, alongside my co-creator and survivor, Jay Candle. Our original music is composed by the brilliant and talented Michael Margay. 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, blankthepodcast. Com. Blink will return with a new episode next Sunday.