Loading summary
Unknown Parent
Hey mama. You don't have time to be messing around endlessly scrolling to find a caregiver for your child. Let me clue you in to my trick to save time and my sanity when finding a sitter. Sittercity.com Sittercity knows what they're doing. They've been helping busy parents find the perfect sitter for over 20 years. While other sites overwhelm you by throwing hundreds of random profiles your way, Sittercity matches you with caregivers who actually fit your needs. No endless scrolling, no guesswork. I love that all caregivers undergo ID verification. They have background checks, specialized qualifications, and real parent reviews to know if they showed up on time or really know how to handle my sassy toddler. And if I need help, I can talk to a real live human, not a robot with Citicity's delightful team. You know, my employer pays for me to get Cittercity completely free as part of my benefits. Yours could too. Citrcity is my go to for a smarter, simpler way to find reliable, trustworthy care. Don't wait. Go to cittercity.com xx and get the help you need.
Corinne Vien
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 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 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.
Jake Handle
I'm Jake Handle. 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 rosy picnic eating blueberries. My wife Ellen is advocating pretty strongly 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 the things online and she found Spalding Rehab. And I never heard of Spalding in her life. And she was advocating to get me.
Corinne Vien
Into Spalding Spalding 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 Farallon 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.
Jake Handle
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. When 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, and they were like, singing karaoke for me. It was lame, but it was like. It was kind of cool. I remember some family coming to Fairlawn in, 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 dawg? 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.
Corinne Vien
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.
Jake Handle
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 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. Suffer anxiety, suffer 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 Fourth of July. @ this point, I need to hit the nurse call button for every single thing I needed. But there's a Parson's Hell and they're understaffed. 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 swam up the floor and everything went black. I thought I'd died apparently. It was like a bloody mess. All I remember is my eyes kind of like come to me and this guy's over and he's like, you're okay, you're okay, you're gonna 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 it's like, what? Oh my God. How did you let this happen to my husband? Where's the ambulance?
Corinne Vien
An ambulance did arrive and it transported Jake to a new hospital. This time he was at UMass Memorial Medical Center.
Jake Handle
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 at the ball too much nowadays. You know, we can, we can show you guys on camera how that would go. I'd aim for Corinne's head and I'd break that window. Strong willed and insanely amazing advocate wifey was like, you're not going back there.
Corinne Vien
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.
Jake Handle
It was hard because I was a full time job, right?
Corinne Vien
Being a caretaker is I was two.
Jake Handle
People'S full time jobs and I could have been team of six full time jobs.
Corinne Vien
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.
Jake Handle
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.
Unknown Advertiser
When you think about businesses that are selling through the roof, Allbirds or Skims, sure you think about a great product, a cool brand and brilliant marketing. But an often overlooked secret is actually the businesses behind the business making, selling and for the shoppers, buying simple. For millions of businesses, that business is Shopify. Nobody does selling better than Shopify. Home of the number one checkout on the planet. And the not so secret secret with shop pay that boosts conversions up to 50%, meaning way less carts going abandoned and way more sales going. So if you're into growing your business, your commerce platform better be ready to sell wherever your customers are scrolling or strolling on the web, in your store, in their feed and everywhere in between. Businesses that sell more sell on Shopify. Upgrade your business and get the same checkout Skims uses. Sign up for your $1 per month trial period at shopify.com audioboom all lowercase go to shopify.com audioboom to upgrade your selling today. Shopify.com audioboom @ Ameca Insurance, we know.
It'S more than just a car or a house. It's the four wheels that get you where you're going and the four walls that welcome you home. When you combine auto and home insurance with Amic, Amica will help protect it all. And the more you cover, the more you can save Amica. Empathy is our best policy.
Jake Handle
And my body was becoming disfigured in front of my own eyes. I was just not really in a good head space. 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.
Corinne Vien
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.
Jake Handle
I'd verbally say like, come late with me or, you know, whatever. She'd be like, I just feel like I'm gonna 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.
Corinne Vien
And so it was in the hospital.
Jake Handle
Yeah. She was like, I, 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.
Corinne Vien
I imagine it would be hard too, 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 as sexually, romantically.
Jake Handle
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 the glove. I'm not gonna say I didn't enjoy it or anything, but it also felt to me like she felt it was another one of her tasks. So 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.
Corinne Vien
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 Kopal 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.
Jake Handle
My mother in law and wife really ran the conversation. And again, my wife, raised at the time, was an excellent advocate and she was getting all these ideas to Aspen 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. 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.
Corinne Vien
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.
Jake Handle
I can still, like, say three word sentences like, like talking like this. Very hard for me to get it out.
Corinne Vien
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 healthcare 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. The moment that you could no longer speak?
Jake Handle
No, but I remember what it said to my wife. I said, I love him.
Corinne Vien
So your last words spoken were, I love you.
Jake Handle
Yeah.
Corinne Vien
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 position. 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 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.
Jake Handle
Autonomous storming. That's like trying to drive a car without gas. For me, I couldn't regulate body temperature anymore. I had 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. Spike over 200 beats per minute. I was diaphragic, 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. I had an exorcism and my back was.
Corinne Vien
Exorcism of Jake Handle.
Jake Handle
Yeah. There was a demon inside the. 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 night's bath, Spalding back to mgh. Every time they transferred me, it would set me into a storm.
Corinne Vien
Do you know how many times this happened to you?
Jake Handle
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 gotta get this Tim down. His brain is gonna melt. They get me in a hoyer lift. You know, the hoyer lift is. Know a horror 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.
Corinne Vien
I'm picturing when they save the whales and they like transport whales back into.
Jake Handle
I'm like, save Willy. Yeah, Free Willy.
Corinne Vien
Free shaky.
Jake Handle
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 will come in. Hi, I'm Dr. Harrell. I'm here to blah, blah, blah, blah, blah. Hi, I'm your nurse, Jan. How 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 gotta 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 you 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. I just start to, like, kind of panic and freak out. Like, wait, am I brain dead? Could it be? Is that possible?
Unknown Advertiser
At Ameca Insurance, we know it's more than just a house. It's your home. The place that's filled with memories. The early days of figuring it out to the later years of still figuring.
Jake Handle
It out.
Unknown Advertiser
For the place you've put down roots. Trust Amica Home insurance. Amica. Empathy is our best policy.
Jake Handle
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? 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.
Corinne Vien
Did the scans show that you were brain dead?
Jake Handle
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. And, like, my brain's a muscle, I should exercise my muscle. So I started talking to myself about everything, doing, like, geography, thinking about places I visited in the past. What's the capital of that? What's the capital of Hungary? Where was. Oh, Budapest. Yeah. And what was that? What was the name? You know, 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 lockdown. Locked in syndrome.
Corinne Vien
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 pseudochoma. In many cases, people with Locked in syndrome are still able to control their vertical eye movements, 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 brain waves to see if they are 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. 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.
Jake Handle
She slowly disconnected me from every person I knew. It started with friends because her reason was they were bad influence influences. In reality, I had several groups of friends. Friends know about 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.
Corinne Vien
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.
Jake Handle
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. If people wanted help, but no one wanted to get verbally abused if it wasn't her way, then get the fuck up.
Corinne Vien
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 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, 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.
Jake Handle
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.
Corinne Vien
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.
Jake Handle
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 this, you know.
Corinne Vien
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 to scheduled right after this to care for Jake.
Jake Handle
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 opened 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 2 liter coke bottle being bopped 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 pulls 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.
Corinne Vien
So the voice that said, why did you do this? Do you remember whose voice it was?
Jake Handle
It was my dad. Yeah.
Corinne Vien
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. An attempted murder by the sounds of it. But who pushed who? All Jake can do is lay there and wait for the next clue.
Jake Handle
Foreign.
Corinne Vien
Thank you for listening to Blank. This podcast is hosted and produced by me, Corinne Vien, alongside my co creator and survivor, Jake Handle. Our original music is composed by the brilliant and talented Michael Margue. 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 blank the podcast.com Blink will return with a new episode next Sunday.
Unknown Advertiser
Every day our world gets a little more connected, but a little further apart. But then there are moments that remind us this to be more human.
Jake Handle
Thank you for calling Amica Insurance.
Corinne Vien
Hey, I was just in an accident.
Jake Handle
Don't worry, we'll get you taken care of.
Unknown Advertiser
At Ameca, we understand that looking out for each other isn't new or groundbreaking. It's human. Amica Empathy is our best policy.
Blink | Jake Haendel's Story: Episode 2 – Locked-In
Introduction: The Diagnosis and Initial Struggles
In Episode 2, titled "Locked-In," Blink delves deeper into Jake Haendel's harrowing journey after being diagnosed with a rare, terminal brain disease resulting from his addiction. Hosts Corinne Vien and Jake Haendel navigate through Jake's rapid physical decline and the emotional toll it takes on his relationships and sense of self.
Diagnosis and Immediate Aftermath
The episode opens with Corinne Vien setting the stage, highlighting the primal fear of mortality and the fragility of life. Jake recounts the onset of his symptoms:
Jake Haendel [03:29]: "I'm Jake Handle. 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."
Jake's swift deterioration leaves him reliant on others, thrusting his wife, Ellen, into the role of a fierce advocate. Despite their efforts, Jake's condition worsens rapidly.
Transitions Between Hospitals and Rising Tensions
Jake's journey includes multiple transfers between rehabilitation centers, each move exacerbating his physical and emotional state. Ellen's relentless pursuit to secure the best care often leads to friction within the household.
Corinne Vien [06:47]: "I have to say, I saw a lot of myself in Ellen. In this moment. Your husband is dying in front of you."
Jake describes his stay at Parsons Hill—a facility he dubs "Parsons Hell"—where inadequate staffing and harsh conditions leave him in constant pain and fear.
Jake Haendel [08:12]: "They were adding about five medications per week to my care plan. Suffer anxiety, suffer pain."
Shift to Home Care and Increasing Isolation
Eventually, the couple transitions Jake to home care, intensifying Ellen's responsibilities and further straining their relationship. The burden of caregiving begins to erode Jake's connection with friends and extended family.
Jake Haendel [12:49]: "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."
As Jake becomes more dependent, Ellen enforces strict control over his interactions, leading to isolation and emotional distance.
Locked-In Syndrome: Awakening Consciousness
A pivotal moment occurs when Jake experiences what he initially believes to be brain death. However, he gradually realizes that he remains fully conscious despite his body's paralysis—a condition known as Locked-In Syndrome.
Jake Haendel [28:43]: "How can I interpret what they're saying? How do I remember my childhood? How am I thinking about my mom?"
Corinne explains Locked-In Syndrome, emphasizing Jake's full cognitive awareness despite his inability to communicate verbally.
Autonomic Storms and Continuous Struggle
Jake describes the debilitating autonomic storms he endures, which are both physically excruciating and emotionally draining. These storms lead to frequent hospital transfers, disrupting any semblance of stability.
Jake Haendel [23:42]: "Autonomous storming. That's like trying to drive a car without gas."
Despite medical advancements and multiple interventions, Jake's condition deteriorates, leaving him trapped in his own body.
Isolation and the Loss of Trust
Transferred to Spalding Rehabilitation Hospital, Jake faces both physical challenges and emotional betrayal. The medical staff mistakenly believe he is brain dead, leading to moments where he overhears conversations that hint at disbelief in his consciousness.
Jake Haendel [27:46]: "She goes, oh, don't worry, he can't hear you. He's brain dead anyway."
This misconception amplifies Jake's sense of isolation, as medical professionals cease meaningful interaction, leaving him to confront his reality alone.
Domestic Turmoil and Family Conflict
At home, Ellen's strict caregiving methods escalate tensions within the family. Jake overhears violent arguments between his wife and half-brother, Max, culminating in a physical altercation that leaves Jake feeling even more powerless.
Jake Haendel [34:24]: "I want so Bad to just be like guys, stop, stop. I can't say anything, I can't move, can't even cry."
These conflicts underscore the emotional devastation that accompanies Jake's physical decline, highlighting the strain on familial bonds.
The Turning Point: Realization and Acceptance
As Jake navigates his new existence, he grapples with the loss of his former self and the relationships that once defined him. The episode poignantly captures his internal struggle and the harsh reality of being trapped within his own body.
Jake Haendel [35:43]: "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?"
Conclusion: A Glimpse of Hope and Continued Suffering
Despite the grim circumstances, Jake's story is not solely one of despair. His interaction with Dr. Naga Kopal Vena at Massachusetts General Hospital introduces a flicker of hope, suggesting that his condition might hold more mysteries than initially believed. This sets the stage for potential breakthroughs in his battle against the disease.
Jake Haendel [21:46]: "I said, I love him."
The episode closes with Corinne Vien emphasizing the ongoing nature of Jake's struggle, hinting at future developments and the resilience required to face such overwhelming adversity.
Notable Quotes
Final Thoughts
Episode 2 of Blink presents a raw and unflinching portrayal of Jake Haendel's descent into Locked-In Syndrome. Through intimate storytelling and poignant reflections, the episode underscores the profound emotional and physical challenges faced by individuals and their families in the face of terminal illness and isolation.
For those who haven't listened, this episode offers a compelling exploration of human resilience, the complexities of caregiving, and the haunting reality of being fully aware yet entirely powerless.