As old memories resurface and old connections are rekindled, Jake starts to suspect that someone in his inner circle may have been orchestrating far more than just his care. Alarming details come to light, offhand comments take on new meaning, and a once-unthinkable theory begins to feel dangerously plausible. Content warning: Drug use/abuse, addiction, medical trauma, death and dying, emotional distress & mature content. Resources can be found on our website, blinkthepodcast.com.....Hosted and produced by Corinne VienCo-created by Jake HaendelOriginal composition by Michael Marguet Learn more about your ad choices. Visit podcastchoices.com/adchoices
Chapter 1: What are the content warnings for this podcast?
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
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. Jake was finally starting to see things more clearly about his relationship, about the people in his life, and maybe even about himself. Some truths had slipped past him, or maybe he just wasn't ready to face them before.
To be continued...
Chapter 2: How did Jake's relationship with his caregiver evolve?
So what happened in between? How did Jake go from being completely dependent on others to living on his own and fighting for his independence?
Jake was desperate not to go back to Tewksbury and us basically having to convince the medical community that he'd be OK.
Chapter 3: What challenges did Jake face in finding independence?
I wanted to get out of there. I had this complex surgery, which brought me into Mass General. Mass General wanted to send me back to Tewksbury. I was like, no, absolutely not. Hell no. The only way they would let me leave to go back to the community is if I was able to find my own aides, because I needed 24-hour care.
So luckily, this was during COVID lockdown, so all these people that worked in hospitals So to be clear, not everyone was a trained medical professional. I asked Jake how many aides he had and did it take a few people before he finally found his core group? I only had four. Those four were my people.
I know a lot of people get ones that they only have for like four days and have to find a new one. I had four, two in the day, two for overnights. So yeah, my doctor, good old Dr. Levinson was like, I will only sign off on this if you have money for the apartment, money in the account. And the state will only pay 58 hours a week. And forgive me on the math, but 7 times 24 is a lot.
So I had to find an hourly rate for 100 and change hours. I reached out to Eli. Eli was like, this is obviously a large amount of money. He's like, how long do you think this will take you? And I'm like, honestly, I don't know. I'm like, but I'm going to get better. Give me like four or five months and I won't need 24 hour care. And he's like, you know, what if, what if it takes longer?
And I'm like, put me back in a nursing home. I'm going to get better. So we reached out to about 12 other people. They all made certain dollar amount commitments and it was a little scrappy, but we got the money in the county.
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Chapter 4: How did Jake and Derone begin to rebuild their relationship?
We found an apartment in Cambridge. It's amazing how many places claim that they are ADA capable, they can handle disabled people. This place was totally no, except that he was still completely bedridden. So it didn't matter. It wasn't like he could go to the bathroom anyway, you know, get in a wheelchair and wheel over. It couldn't do any of that stuff.
Imagine you have a newborn baby. Everything you have to do for them. Getting me up. Getting me dressed. Putting on my socks. Brushing my teeth. Feeding me. Transferring me onto the toilet. Even wiping my ass. Showering me. Picking me up off the ground when I made a boo-boo, which only happened once or twice. As well as, like, grocery shopping.
taking me to medical appointments, doing my physical and occupational and speech therapy homework, scheduling. If I had to write something down, they'd write something down for me. Recording videos that you may have seen on my social media. Everything. I was bedridden, and I was out of the hospital. I could finally get this next level of care. And guess what? I came off 24-hour care.
Chapter 5: What were the key moments of tension between Jake's caregivers?
I did that in four months. I just knew what would happen. I knew the dollars were ending. I was like, I gotta do this. Not that I was not motivated without that, but, you know, it's like do or die. It's always been do or die for me.
If we haven't already learned this about Jake so far, it's very clear that he's willing to do whatever it takes. But as Eli mentioned, this place was not ADA compliant. And in a very Jake fashion, with a lot of serendipity and worst luck, best luck moments, he found our apartment complex, which would become the place that he would eventually live independently.
So I'm on the partner shuttle bus, which runs in between MGH, Master General Brigham, Spalding, and the bus breaks down, and I get out. It was the first time I kind of looked around. I see this high-rise, and it says, moving today, three months free, and I was like,
free that sounds really good so I was like we'll meet in there we go in there still COVID lockdown bunch of people in masks they're very happy they're like what do you need and I'm like uh accessible and affordable and this place didn't look affordable at all it's like well we got one place it's got kind of a bad view I'm like again I haven't showered in like three months and he's like well you smell great and I'm like thanks
Chapter 6: What impact did Ellen have on Jake's recovery?
and he showed me this place it worked it turned out with the three months free to be cheaper than the inaccessible spot i was playing for so it was like a no-brainer i just moved here and that's how i ended up here and how you saw me shaking like a leaf in the elevator
clearly meant to be. And it's proved to be the perfect place for Jake to rebuild his life. Which, speaking of, one of the more complicated relationships Jake carried with him into this new chapter of his life was with his father, Derone. At one point, Jake genuinely believed Ellen's accusation that Derone tried to strangle her. But Jake later learned that this case was dismissed.
The damage this caused to Jake and Derone's relationship, it just couldn't be undone overnight. Rebuilding trust would take time. So how did they find their way back to each other?
Eli was helping me write letters in the kind of infancy of my recovery or email. And I was like skeptical, but I knew I wanted to. I just needed time. He was very respectful of that, you know, regardless what he was feeling inside. I think the first time I saw him was at Mass General Hospital, and he just came to visit me. I just felt, I felt kind of uncomfortable.
Chapter 7: How did Jake feel about the welcome home party?
There was this, like, awkwardness because I knew, or I kind of knew what he was going through, like, watching me die. I could only imagine his wife died, his dog died. But yeah, just took it slow. And it was like, you know, felt like we kind of picked up where we left off in a way. And not really going into any details of like, that was really hard watching you storm. Or are you divorced?
Or any of that. It was just like, how you been? You know, casual talk, normal talk.
I asked how they reached this point, the point where Derone felt ready to open up about everything that he'd witnessed during Jake's decline. When did he finally feel safe enough to share his perspective?
I was working on a book proposal. I was just like doing interviews like this with people. And I was like, hey dad, can we put on the GoPro and let me just like ask you some things? And he was like, yeah. And that was the first time on a live recorded interview we really went into it. And I'm just kind of like... Okay.
He never pried and felt the need to be like, and this happened, and this, and this. That's just who he is. He's not trying to overwhelm people's stuff. And probably he's like, well, my son's ready to ask me about whatever I'll tell him. And that's how it went.
Derone began to unveil more to Jake, sharing things he had observed before Jake's diagnosis, things he'd kept to himself out of fear. Jake had been newly in love, talking about marriage and starting a family, and Derone didn't want to get in the way. But now, with time and reflection, those conversations have grown deeper, and they're still happening to this day.
Take the sample collection at the hospital, for example. Derone had no idea it happened more than once. he found out while listening to this podcast. He had believed that he was giving consent for one single collection, a chance to preserve the possibility of Jake becoming a father.
But to hear that Jake's body was put through that repeatedly and in different rooms and different wings, that was devastating. Derone was only trying to do what he thought Jake would have wanted. And one of those things was making sure that Jake's wife was by his side in what everyone believed were Jake's final moments. In fact, when Jake was first diagnosed, Derone spoke with Ellen.
He tried to give her perspective. What it's like to care for someone who's dying. It's something Derone, heartbreakingly, had already done twice.
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Chapter 8: What were the conflicts regarding the house between Derone and Ellen?
Daron knew that there was a chance Ellen wouldn't stay. So much had already happened. She was young and in this marriage that was already facing many challenges. And now this? But Daron gave it his best shot.
The talk I gave her was meant to, like, kind of pump her up for doing the right thing. I told her, look, you know, I don't know if you've ever had to take care of somebody or been close to somebody dying. I've done it twice. He is your husband. Part of you loves him. I understand you're angry with him, but maybe let the anger go for now.
You know that the chances of him surviving this are really poor, and... All I know is that if you leave now and just take off, you might really regret it later. If you take care of somebody all the way to the end of their life, it'll be like probably, I'd say, the greatest thing that you can say that you have actually done for someone.
And I looked at that and realized that she was going tick, tick, tick, tick, tick. Yeah, everybody's going to think how great I am. And I'll tell you the truth, part of it was a little selfish on my part because I just couldn't fathom how the hell am I going to take care of him all by myself. Maybe, you know, between the two of us, maybe we can make it work.
Over time, I just saw more and more kind of horrible stuff. But I know that Jacob is in love with her. You know, I didn't want to wreck it.
And we all know how this ended up. The two of them working together to care for Jake and make decisions for Jake. Until it wasn't the two of them. It was just the one. Ellen.
She was constantly talking about herself, how she does so much and this and that. But she's sticking me with most of the work, you know, and then she'd disappear for hours. And, you know, I got to do this. And then she'd come back and then she'd criticize everything I've done. That sort of thing.
No doubt everyone believes Ellen took incredible care of Jake and many attribute her dedication with his survival. And as a reminder, he's the only known survivor of stage four of acute toxic progressive leukoencephalopathy. So perhaps Jake's sheer mental strength and determination, coupled with his wife's belief that he was indeed still conscious and had a chance to recover, truly saved
It should be like the sing-songy kind of banal chat about how wonderful everything is. And, you know, and Jacob looks like he's doing better today, don't you think? What do you think? And I'm thinking to myself, no, he's going downhill fast every day. I don't know whether it's wishful thinking. You know, I'm trying, yeah, maybe a little better. Maybe. Maybe.
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