One-Hundred Pound Baby

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heather is a nurse practitioner from united healthcare we meet patients wherever they live during a house call she found jack had an issue jack's blood pressure was dangerously high it was 217 over 110.

so they got jack to the hospital and got him the help he needed he had had a stamp placed in his heart preventing a massive heart attack if it wasn't for my guardian angels i wouldn't be here hear more stories like jacks at unitedhealthcare.com benefits features and or devices vary by plan area limitation and exclusions apply.

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 at 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.

But now, there was no choice.

He was determined to move forward, focused on recovery, rebuilding, and reclaiming what was his.

But that also meant asking hard questions.

questions.

Who could he really trust?

And what part did everyone else play in the mess that nearly destroyed him?

At the time of his divorce, Jake was still a patient at Tewkesbury State Hospital, and he was traveling to Spalding for outpatient therapy.

But if you remember from the very first first episode, I met Jake in the elevator of our Boston apartment building, not a hospital.

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 okay.

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 Tewkesbury.

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 hospitality and retail were kind of like out of work.

So I was taking these FaceTime interviews from a hospital that had a Mass General.

So to be clear, not everyone was a trained medical professional.

And it was just like people that I kind of vibed with.

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 for

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 seven times 24 is a lot

so i had to find an hourly rate for a hundred 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 gonna get better give me like four or five months and i won't need 24 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 gonna 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 account.

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 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.

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, MS General Brigham, Spalding, and the bus breaks down and I get out.

And it was the first time I kind of looked around.

I see this high-rise and it says, move in today, three months free.

And I was like, free?

That sounds really good.

So it's like, we'll meet in there.

We go in there.

Still, COVID locked down, a bunch of people in masks.

They're very happy.

They're like, what do you need?

And I'm like,

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

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 Darone.

At one point, Jake genuinely believed Ellen's accusation that Darone tried to strangle her.

But Jake later learned that this case was dismissed.

The damage this caused to Jake and Darone'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 of 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.

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, it 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 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 Darone 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, when my son's ready to ask me about whatever I'll tell him, and that's how it went.

Darone 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.

Darone 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, Darone spoke with Ellen.

He tried to give her perspective, what it's like to care for someone who's dying.

It's something Darone, heartbreakingly, had already done twice.

She went to see some old boyfriend, whatever.

She disappeared, trying to figure out whether she's going to stay married to him or not.

She shows back up.

I took her out for breakfast and we had a chat.

And, you know, his wife is talking about dumping him.

And all I could think of is he wants her.

So, how do I make her stay for him to make him happy?

Darone 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 Derone 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 if 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've actually done for someone.

And I left at that.

I didn't realize 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 them all by myself.

Maybe, you know, between the two of us, maybe we could 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.

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She was constantly talking about herself, how she's 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 gotta do this.

And then she'd come back.

And then she'll 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 him.

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, he's going downhill fast.

Every day is,

you know, I don't know whether it's wishful thinking.

You know, I'm trying to think, yeah, maybe a little better.

Maybe.

And maybe by Ellen convincing herself that Jake was doing better, she was convincing Jake too.

But there there was still this piece that many of the people interviewed, both those who agreed to have their voices on this podcast and those who are still waffling with the idea.

Many remember these chunks of time where Ellen would disappear.

When Jake was in hospice, it would be for hours, with Darone having no idea where she was, which makes sense as their interactions were becoming more and more tense by the day.

And when Jake was in the hospital, sometimes it would be for a week or more, according to people's memories.

But as Jake started to reflect on the things that he'd observed, and as Darone and others others shared memories with him, things started to take shape.

One of these early instances happened in the hospital, Massachusetts General Hospital.

It was New Year's Eve just before Jake was put on hospice.

It was New Year's Eve, wedding anniversary.

He won't make it till the new year.

I remember getting a New Year's hat put on me and Kazoo's decorations.

When Jake began to recover, a photograph was shared with him showing this exact moment.

And then my mother-in-law sent me this picture and I was like, wow.

The picture appears to have been taken via Snapchat.

Ellen sits over Jake, a kazoo in her mouth and black and gold feather boa around her neck.

Jake lays in the bed, the feeding tube in his throat, and a Snapchat filter of a New Year's hat with fireworks and sparkles dances around his head.

Jake had a positional eye gaze at this time and he was not able to control where he looked, but the camera is placed just so so that Jake is looking directly into the camera.

Not long after this memory, Jake was put on hospice, cared for at his father Darone's home with Darone and Ellen as his primary caretakers.

Ellen decides that we're going to have a welcome home party for Jacob.

He's coming home in the ambulance.

It was my job to go to McDonald's to get him a McFlurry.

I don't know how she gave it to him.

I think she did she pump it into his feeding tube.

I don't trying to remember.

Didn't make any sense.

Or did I get it for her?

But yeah, I remember that was my task.

Then I'm thinking to myself, what is this ridiculous nonsense?

The guy's lying here, home in hospice and you're having a party.

I remember getting me into the house up these icy stairs.

I mean, I almost got dropped and rolled out of the gurney and I'm on this ventilator.

And there's like, I don't know, 30 of her friends, a couple of the bridesmaids from my wedding were there.

And, you know, I can't move or signal.

I'm in this breathing machine.

I think it was a sad, uncomfortable, and confusing vibe in there.

I don't know how I felt.

I felt like, why is there a party happening?

I just want to die and go away.

Jake's move to hospice would result in Darone and Ellen spending more and more time together.

Darone and Ellen began to bicker and fight.

And one of the issues that arose time and time again was about the house.

Darone had initially told Jake and Ellen that they could pay rent, and those rent payments would work towards eventually buying the home from him.

A few payments had been made, and Darone remembers a lot of discussions around this and other items that Derone owned.

And the sort of division between what Darone owned and what Ellen had the right to, it became the sort of contentious and regular argument.

I had several cars in the driveway.

I had

an old Lexus that Jake was driving around a bunch.

I had an electric car that didn't get very good mileage.

And I had my wife's Nissan.

Anyway, so I was letting her have access to a vehicle.

Darone tells me about Jake's first storming episode while at home on hospice.

She called for an ambulance and they took him right into

Boston, to Master General.

And I get a call from her and she says jake's a master general i said do you need a ride and she goes no i'm already on my way and she hangs up i drive in i get there and i'm heading up to fourth floor londer neural i see you and

all it's in i'm surrounded by uh security and i don't know if you've been to master general but they're security guys wear these nice suits they look like secret service agents with a earpiece and

I'm not allowed in

to see Jake.

I'm like, I'm his father.

They say, I'm sorry.

You're not allowed.

His wife says,

you're not allowed in.

So, well, I said, yeah, two can play this game.

No more car for you.

That did not go over well, and other people were brought in to help mediate.

My stepdaughter wound up negotiating the deal.

I let her use a car, and I can go see Jake.

Eventually, Darone would not be allowed to see Jake, and even if he tried to sneak in, it would have been nearly impossible to not get caught.

When she wasn't in my hospital room, regardless of where that happened to be,

she would set up cameras where she could do check-ins.

So I was aware she was doing Amazon and Echo.

So, like on the Echo shows, they have cameras where you can

do drop-ins.

So, she was able to hit a button on her app and it would open up the camera into my room.

And a real little red light would turn on, and it freaked the nurses out.

And then I also heard there was some nanny spy cams, kind of like teddy bear cameras, which is a no-no in hospital worlds.

When Blink first launched, we held a launch party in Boston, inviting many of Jake's friends, family, professionals, nurses, and doctors who've helped him along the way.

One of the nurses here shared with me how spooky and weird it was to be watched through these devices.

And I will say, this story was told by many as an example of the need for control.

And when I first heard the story a few years ago, I thought it was totally crazy.

But after a hospital stay with my infant where I had my husband bring in some extra monitoring devices for my own peace of mind, I don't think it's crazy.

But perhaps all of you listening think I'm also crazy for that too.

I heard her speaking.

I wasn't sure if it was a teddy bear or the Amazon devices, but I would hear her voice be like, don't do that, or he needs this, or like whatever.

And it would scare the nurses.

And there was a button you could hit for like, do not disturb.

And they started to do that when they would hear these voices.

And I just remember her coming in the hospital and kind of like freaking out on them never to touch that button.

It didn't feel concerning in that moment at all.

It was just like I always

thought

going through that it was for my best interests but nowadays I don't think it was for me.

I think it was for for her and control.

But at the time, again, it it didn't.

Yeah, I don't know.

I'm still like fucked up in my own head because I'm like, did I think this way?

Because I was so blinded by the love I felt for her at that time or what, but

yeah, it was always like I was trying to do whatever would make her feel okay.

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I couldn't allow myself to feel much of anything.

It was impossible.

I mean, nobody could come to my home because she didn't want anybody.

Everything had to be her way.

And that's kind of caused some friction because she would do stuff

and then she'd call me an idiot because I didn't, wasn't either doing it the way she wanted it done or she hadn't told me how she wanted it done and assumed that I should just know

but she had this thing about making sure that his urine was not very yellow it should only look a little yellow it shouldn't look like a bright yellow we had this big syringe

now you fill this up and you push in three things of water.

I thought that's an awful lot of water.

The feeding and the and all the water that she would pump it was way too much.

And I said, are you sure?

She goes, yes, I know.

She was like adamant about it.

I said, okay, I can't argue with her.

Jake told me,

it was like, I thought I was going to explode.

Literally.

I was like, oh my God.

And I'm like trying to read his eyes.

I said, I don't think he likes yourself.

Slow it down.

Every now and again, I go, nah, I'm not giving him this water.

She just made me self-conscious, and I just felt like I was a person who didn't belong in my own house.

Tyrone recalls a very uncomfortable moment.

I walked into her room to ask her a quick question, and she was just talking at me and kept talking.

But meanwhile, her shirt is like all open so that you know I can see her breasts.

And even more than that, and she's sitting like this, a crotch shot, all thinking to myself, why is she doing this?

Is she either she's completely unaware of what she's doing or she's doing this on purpose?

And I just felt really uncomfortable.

And the longer she stayed under the roof of my house, the more I really wanted her to go away.

Darone recalls that things escalated from differing opinions on how Jake should be cared for to Ellen becoming suspicious of him.

We had this lockbox to keep his medication medication in, and then she accused me of stealing his medication.

I don't need to steal his medication, number one.

I don't want to steal his medication, number two.

And if I wanted any medication like that, I know where to go get it.

There was also this issue around a check.

Summons in the mail for check fraud.

And I'm thinking, what else can she come up with?

We're interrupted by some squeaking, the noise coming from Darone's lap, accompanied by some twitching paws and huffed breaths.

She's having a good dream, huh?

That's Brownie.

She's a good dog.

It's nice to be a dog.

So you don't have to think about those things.

Brownie was also a witness to these events, living alongside Darone, Ellen, and Ellen's own pets.

She seemed to, you know, take good care of her pets, whatever.

They seemed to be important to her.

But if they were in her way, she had no problem with like just pushing them away real hard.

And she seemed to like Brownie, but obviously once I was out of the house, she was rid of me.

She decided to not allow Brownie back in the house once she exited.

As we know, a restraining order was taken out on Darone while Jake was on hospice, and Darone had not been allowed back into his home.

But this day, the day Brownie was left outside of the house, Darone had just been there, saying his tearful goodbyes to Jake.

It was the day Jake was read his last rites.

All in, like, within an hour of my leaving my house under the threat of arrest if I didn't get going soon.

You know, after saying my final goodbyes to Jake, my phone rings, and it's one of his caretakers saying, El, Elle, threw your dog out the door and wouldn't let her back in.

I said, What?

I said,

where's my dog?

She goes, I have her.

I brought her home.

So I said, oh, okay, I'll come get her now.

So I went.

She bought her a new leash and collar and something to eat.

Being very sweet to her.

All right, now I gotta make sure this hotel's okay with the dog.

Another caretaker had a different update for Darone.

One of his caretakers said to me, hey, she said, tell me talking about getting rid of all your wife's stuff.

No, no, no.

Tell her I said not to touch my wife's stuff.

Anyway, I saw I made the grave error of sending Elle's mother a text message through Facebook messenger, I guess, asking that she please not touch any of my wife's stuff.

That was a violation of my restraining order.

Friends and

relative people were saying, how can you let her do this?

How can you,

society says, you don't understand.

It's not a matter of letting.

She's done it.

How can you let her keep Jacob away from you?

I said, there's nothing I can do about it.

So with Darone out of the house and with Ellen as the primary caretaker during hospice and occasional aides coming and going, Jake began to recognize some interesting behaviors.

So when I was on hospice and isolated, just me and my wife, I started hearing her talk to herself.

She would just be rambling on and on about her day and things that pissed her off.

And when she'd be like cleaning me, changing me, she said, you know, honey, you know how I always wanted a baby?

Well, now I got my own 100-pound baby.

Obviously, I'm not 100 pounds anymore, but I was.

And other things she would say, which first time I thought it was kind of funny, humorous, because it had dark humor.

She would say,

I always wanted a husband that could not talk back.

And then she kept saying it.

And that's when, what's that movie?

The movie Misery.

I was like, oh my God, she has lost her mind.

I'm like stuck in misery, but that guy could talk

and kind of move.

Not me.

So it's very scary.

So these were the strange gym missions I heard.

How she always wanted a baby and now that she has her own, 100-pound baby.

And she always wanted a husband that could not talk back.

It's unsettling to think about.

Jake was largely alone in his father's house with Ellen, trying to make sense of the strange offhand comments, never sure if they were meant as jokes or something more.

Meanwhile, his father Darone had been living out of a hotel with Brownie, unable to return home due to the restraining order.

Ellen had full control of the house for a time, and eventually she did move out, and Darone was finally allowed back in.

But by then, as we know, Jake had already vanished.

She didn't get to keep my house, and that's probably what really pisses her off.

But she also caused damage to it.

Somehow, she flooded the hall, upstairs hallway, and the master bedroom carpeting was wet.

I don't know if she purposely took buckets of water and just dumped them on the wood in the floor to just wreck the house or what.

He started getting better, and she distanced herself from him.

She posted on Facebook that she was leaving him.

She wrote this whole long thing about justifying her reason for leaving Jacob.

She wasn't going to be getting any more like pats on the back now that he's doing better.

I mean, what's in it for?

Mother-in-law at the time, Cindy, after I broke, well, didn't break it off, but she like stopped coming around.

And when I said, I love you, kind of hung up the phone.

And I filed for divorce.

And she got really angry.

And it was a battle.

Her mother secretly visited me and talked to me like all the time.

Actually, that's the only reason I have any photos.

And that video of me dying in the hospital.

That's from her.

This goes all the way to when i can verbally speak again and the divorce is starting to get real heated and eli is back in my life and we'd have like different visiting times and she said this one thing to me i was like i don't know why ellen is is acting like this she goes well honey think about it your life is getting a lot better and her life is getting a lot worse

and i was thinking about that last night and i'm like

in the scheme of things at that time, like my life was

no

picnic.

And it still isn't, quite frankly.

But that was odd.

And then it was hard for me.

I was like, Cindy, I have a lot of love for you.

But I think we shouldn't speak anymore until the divorce is final.

And she started crying.

And she was like, ah, like, I want to still be in your life.

And I'm like, just till the divorce is final.

And then I'll reach out.

And I did reach out.

I mean, I don't know if I ever told you this, but before we were married,

all the time, Cindy would call me and be like, Can you tell Ellen to please unblock me?

Like, that's how enraged she would get.

And she'd block her own mom.

So the fact that Cindy would come and visit me, she knew she was r really betraying her daughter's trust.

But I was thinking last night, that is a weird thing to say to someone who's still bedridden.

Your life seemed so much better, and her just getting so much worse.

I mean, I know very little about her when I think about everything as a whole now.

It's like I fell in love and we never spent a day apart, and we were married like three to five months later.

That's crazy.

It's not crazy, but yeah, okay, maybe it's crazy.

It can end good too, but it didn't end good for me.

Well, I guess in the scheme of things, it did.

I'm reconnecting with people.

I'm starting to put pieces together like a puzzle.

And I had a crazy thought and theory about how maybe she had something to do with my hospitalization.

The more I started talking to people and hearing these things that were happening not in the Rumos, and that theory started to go from crazy to closer to a possibility.

And then, unprovoked, I get a message from the guy who happened to have the same theory.

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 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, blinkthepodcast.com.

Blink will return with a new episode next Sunday.

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