(gentle music) (gentle music continues) - [Cameraperson] Kim, what are we doing?

- We're doing Ouija board.

- Okay.

- [Cameraperson] What's that do?

- What?

- What's that do?

- Oh, we, like, talk to ghosts and stuff, and it's really scary.

- Hannah, touch the Ouija board.

- Oh, and Lillian's gonna die because of scissors.

- Hannah, you have to touch the Ouija board.

- That is so not true.

- Am I gonna die because of scissors?

- No.

- See?

(Kim chuckles) I like you, ghost.

- Is Lillian gonna live a long and happy life?

Okay.

- [Cameraperson] What's it say?

- He said "Yes."

- Oh, good.

- [Kim] At what age am I going to die?

- [Lillian] You have to have your fingers on it.

(pensive music) - The day Lillian was born was a really amazing day.

- She was born at six in the morning, on a Sunday morning, March the 3rd, 1991.

- My parents let me kind of sit with her, and I started singing "This Land is Your Land" to her 'cause that's a song that my dad had sung to me before going to bed.

- But when I got back after doing some errands, I found out that Lil had been in Cate's arms nursing and she just passed out, she just went completely limp.

- We had geneticist and heart doctors and all kinds of doctors trying to figure out what's wrong with her, and no one knew anything.

- The doctors said, "I can't explain it.

I can't give you any reason why this happened."

She said, "Sometimes I've seen, like, children aren't quite ready to be born, like they still have a foot in the other world and they're not sure, you know, whether to stay in this one or not.

And, you know, it looks like she's here and she's okay now.

And I can't tell you anything else except to take her home and love her and not to worry too much."

- I think she knew her life story.

I also believe that people are born with a template and they're born to live their lives and they already know what it is.

There's already a reason for them to be here, and they have to live out their lives according to their template, else they wouldn't be born.

(bright music) - [Lillian] This is a story about me through my father's eyes, in a diary he kept and then in a book he wrote.

And since it's about me, I'm going to help tell the story, with his words and even mine.

Oh, and with the shaky camera too.

I'm Lillian Chason.

(gentle piano music) (gentle piano music continues) - Well, I always knew she was special.

And when she was growing up, people were attracted to her.

- [Eric] Yeah, tell me what you're doing.

Wink.

- Winking.

(Eric chuckles) - [Eric] That's a good wink, Lil.

- (chuckles) That's a great wink.

I like the mouth that goes with it.

(Eric and Cate laughing) - [Eric] Hannah, let's see yours.

One more time.

Okay.

- One more.

- Lillian and I had a really happy childhood together.

We shared a room up until the end of middle school, and we had our kind of typical sibling rivalries.

And at one point, I think we actually taped a line down the middle (chuckles) of the room.

- So, (sighs) you are a sister, and sisters always share a special bond.

And we fight a lot, (chuckles) (people laughing) but I still look up to you and I love you with all my heart.

Love you, Hannah.

- You could feel like she was a level above the rest of us in high school, just in maturity, in wisdom.

- I met Lillian in seventh grade.

She was the coolest person I'd ever met.

She was the one who introduced me to all different types of new music and new movies.

And suddenly after meeting Lillian, it was like this whole new world had opened up, and I feel like she was always my kind of coolness spirit guide.

- I think the second time we got together, it was for her birthday.

And I remember that day sort of helping her cut the cake, and we were kinda chatting all night, and that was, I think, where things sort of sparked and took off from there.

- He was incredibly attentive to her.

They were kinda like an old couple in a lot of ways 'cause they took very good care of each other.

- You just, you and her just were it.

It was like two pieces of a puzzle, and you just, it was like watching a much older couple.

- We immediately sort of clicked.

We were very comfortable with one another.

We sort of fell into a very, very comfortable relationship very early.

- And so when Lil was, I guess 16 is when we found out that she had Stargardt, but she'd been having vision problems for a year or two before that.

It's an impairment of your vision where the macula, which is the central part of your eye, decays over time.

- If you were a patient with Stargardt disease and you were looking at my face, if we were early in the disease course, my face might appear quite blurry and my features may not be recognizable, whereas the peripheral parts of the retina would be perfectly okay.

In later courses of the disease where you're actually losing a lot of cells in the macular region, my face would be entirely black.

Again, peripheral parts of the retina would be fine.

- She said she was having trouble seeing, so we took her to the optometrist.

And we brought her back a couple of times and she was still having trouble seeing, and that's why he suggested that we go see a retinologist, that maybe it was something more serious, 'cause he had tried everything he could.

She was very healthy, she was athletic.

She played softball, that was her main sport, and she loved doing that.

She was active, you know, there was nothing about her that gave any indication that she was sick.

- She used to wear sunglasses all the time.

I remember one of my friends commenting on the fact that she was wearing sunglasses.

We had all gone to ice cream, but it was kind of a rainy day.

And I remember driving home afterwards, and I think she explained it to me exactly what Stargardt was and how she was losing her eyesight.

- There was one time I remember where she talked to me about being nervous about what it was gonna mean for starting college and being on her own.

And what struck me was that she wasn't even so concerned about how she was gonna manage it with her eyesight, she was just having some of the kind of typical anxiety that, like a high school kid has going into college.

- [Lillian] All this talk about my eye disease, it did kind of make me special.

On my college application, I wrote that I won't let my eyesight define me, but I know I have limits.

I'm not looking for pity for my community.

I have no remorse, no regret.

In many ways, my lack of sight has opened my eyes.

- So I just wanna say, on my graduation day- - [Attendee] She's crying.

(people laughing) - That I wanna thank all of you because you've all been such huge influences in my life and you've watched me grow up and helped me get to this point.

And I love you all very, very much.

And I know that if I can aspire to be anybody, it's all of you together- - Aw.

- In one big bundle.

- Aw.

- So, Happy Graduation Day- - Aw!

- Cheers!

- To Lil!

- So things like being able to act, you know, she acted up until she left for North Carolina because, even though she was having trouble seeing, you know, she would look at her stage directions and memorize things and do the best she could.

(soft music) ♪ Hopefully devoted to you ♪ - She was at about 20/40 when she left for North Carolina to go to college, but it progresses.

Once it starts progressing, it progresses rather rapidly to be 20/400, which is legally blind.

- The timeline on which she was going blind was always unclear to her, unclear to me.

I mean, she knew she was going to be blind, she knew she was losing her eyesight, but- - I had fears at some times that Lil wasn't gonna be able to lead a normal life.

But yet I also had feelings that with such an amazing person, she was gonna do the best she could with this.

- Lil and I spent the last night together, the night before she went to UNC, and, you know, had agreed and had separate a little bit, see how college played out, and maybe reassess at Thanksgiving or over the holidays when we saw each other again.

The circumstances of where we were in our lives and where we would be geographically, it just was a good time to sort of see what else was out there, see how strong our relationship was.

Hugging her goodbye on that doorstep when she was leaving for college was the last time I saw her until I was in the hospital with her.

(inspirational music) (inspirational music continues) - My name is Mark Perry.

I am a teaching associate professor at the University of North Carolina at Chapel Hill in the Department of Dramatic Art.

I'm the author of "A New Dress for Mona," the play in which we cast Lillian.

The story is of a 16-year-old girl from Iran who in 1983 was executed because of her beliefs.

She was a member of the Baha'i faith, but her beliefs were powerfully about love and unity.

And the greatest crime she committed was teaching children's classes in her community.

Everyone had signed up for the second night of auditions that wanted to audition, except for one person and that was Lily, and she signed up for the first night of auditions.

You know, right away, we looked at her, the director, Joseph Megel, and I, we looked at her and said, "Well, she'd be great."

Before she was leaving this first audition, she stopped at the door and she was like, "I need to be part of this play."

And she was shaking.

She said, "So whatever role, I need to be part of this play."

- [Lillian] There's nothing better than being on stage.

It's where I feel most alive.

And when I got the lead in this play as Mona, that was everything to me.

I just had to be her.

What meaning does my life have?

Mona gave up everything for her belief.

(gentle piano music) - Over the last week, my administration's taken several precautions to address the challenge posed by the 2009 H1N1 flu virus.

Today I'd like to take a few minutes to explain why.

This is a new strain of the flu virus, and because we haven't developed an immunity to it, it has more potential to cause us harm.

This creates the potential for a pandemic, which is why we are taking all necessary precautions in the event that the virus does turn into something worse.

This is also why the Centers for Disease Control has recommended that schools and childcare facilities with confirmed cases of the virus close for up to 14 days.

(melancholy music) - The first visit Lillian had with her health services at the school, from what we can tell from the notes that it seems like they pretty much brushed off how severe her illness was.

- I remember the day very well.

It was a beautiful Sunday in the fall, it was in November, and it was a shiny sunny day.

And I was teaching, of course, on crystallography.

I was in my study, working on my notes to give for my lectures the next week, and I got a text that came in from Lil.

It actually asked, "Who is the retinologist down in North Carolina?"

'Cause she knew we had made some connections.

And she said she wasn't feeling well.

Our biggest concern was, you know, getting her to go see the doctor.

She called us after she saw the retinologist, who said she was probably coming down with the flu.

And Cate begged her to go see the regular doctor.

Cate all along knew that it was really serious.

- It was a Friday, the Friday before Thanksgiving, and I got a call from Cate, my cousin, and Cate said, you know, "I'm really quite worried about Lil and I was wondering if you would mind or have the time today to go and take her to Student Health, 'cause she sounds really bad on the phone."

She said she would come out.

And then I noticed a young woman coming around the corner of the building with dark glasses on.

And I thought, what a shame, there's a college student already drunk at 10 o'clock in the morning, because she was staggering and she could barely walk.

And then within a few seconds, I realized it was Lil.

I was immediately a great deal more worried than, okay, this is going to be a routine trip to Student Health.

They decided to take her up to get a chest x-ray.

She really couldn't catch her breath to talk very much.

She really just only wanted to lie extremely still.

The x-ray came back and they showed it to me, and it was white.

They said it should be black.

The main doctor up in pediatric ICU decided he wanted to put her on a ventilator.

- [Lillian] There was so much going on around me, and I could see how concerned Melinda was.

I guess they need to sedate me and put me on a ventilator, but they needed my parents' permission.

They put the phone next to my ear, and Dad said that they were on their way down.

We said I love yous.

- I was getting back to my dorm and I got a call from Lil's mom, who told me, you know, Lil had been intubated and that she was in serious condition in the emergency room.

And she had traced the letters, Matt, M-A-T-T, on Cate's hand when Cate had gotten there.

Immediately knew I had to go down there.

- So when Lillian Chason and I met, she was already on a ventilator, so she couldn't talk to me.

I had to rely on what her parents were telling me and what her other physicians were telling me.

So I assessed her, and I made the determination that at this point in time, she probably will benefit from ECMO, but there were no guarantees.

And then I had a separate meeting with her parents, both Eric and Cate, and we sat down and we talked about the pros and cons of going on ECMOs, the danger and essentially the outcome, and that the outcome was unknown.

And at the time, you know, clearly I was more focused on Lillian in terms of really there was no other option at this point.

But certainly the anguish of parents at that stage certainly struck a chord with me.

- What comes back to me the most is this memory of hopefulness.

We were really, we had a lot of hope.

(gentle music fades) - On Thanksgiving morning, we got up and went to a cafeteria for about 40 minutes and came back.

And Dr. Charles and his wife were standing at the foot of Lillian's bed.

- But I thought it was also important to personalize the visits, to know that, you know, these are families, these are just like ours, and that, you know, their care is just as important.

And as much as I may not be at home all the time, this was important to me.

- There was so much happening every day that I kept a notebook, partially 'cause I'm a real notetaker.

"Friday, December 11th, 2009.

It's around 3:45 and I'm taking a break.

I haven't had any lunch and I'm feeling sort of low.

It's been a constant rollercoaster of emotion, with every up followed by a down.

Your chest tubes haven't been bleeding anymore, and the x-ray from this morning didn't show much change from the day before.

The right lung definitely has some open volume, but the left lung shows very little improvement."

- We had had a meeting with Dr. Charles that morning, the family, because some of the nurses and people were grumbling that Lillian had been on the ECMO machine too long.

And it's understandable.

Longer than anyone else.

But there was reason to believe that she should stay on.

So Dr. Charles had a meeting with all of us and said, said, "I'm making the decision that Lillian's staying on the machine.

And with this decision I'm making, I wanna tell you, Chasons, that when I say it's time to call it quits, then you're going to agree with me, right?"

And we all agreed.

- We were told that, you know, she could hear things that we would tell her, she could hear music that we were playing, she could hear voices around her, and that that would all bring her comfort.

But she was not... She was under such heavy medication that she was motionless and not responsive.

- So there was a point in time where we had to change her ECMO circuit.

And during the process, she had a cardiopulmonary arrest.

- She was going into failure and dying, and they were calling codes or whatever they do, and we all went running in there.

- It was a very sort of a memorable process because her parents were standing outside the door.

And I had actually gone to inform her parents that she's having a cardiac arrest, that this doesn't look good.

- She was tanking and everything was going away.

And as an acupuncturist, I went to Kidney 1 at the bottom of her foot and felt her pulse there, because that's what we consider essence.

And, you know, life's essence comes from there.

And I put my fingers into her Kidney 1 pulse point and I felt a pulse.

And he called time, and I said, "No."

And he looked at me like, "You promised me."

And I said to him, "She's alive, she's still alive."

And he goes, you know, "Nurse, call it."

And I said, "No!

She is still alive."

- And her mother says, "Oh, you don't worry, she's gonna come right back."

- And one of the attendings or residents or something who, he was up at her right wrist, and he said to the nurse, "Give me a Doppler."

And he put the Doppler on Lillian's pulse.

And everybody, I mean, the place seemed to be just, there seemed to be hundreds of people there, there were probably a dozen, I don't know, but he had the pulse, and it sounded exactly like if anybody's ever had a Doppler on the first time they hear their child's heartbeat, it's exactly what it sounded like, the heartbeat of a newborn baby in utero.

And as we were hearing that sound, the heart monitor started going, and it just got stronger (machine beeping) and stronger and stronger.

And Dr. Charles shook his head and said, that's when he said, "Now I know who I'm dealing with."

- "December 14th, 2009, Monday.

Last night you were stable, but your sats were down a little in the morning.

This was a typical pattern.

You were doing well when we left for the night, but overnight you had several episodes during which your blood pressure spiked and your sats decreased."

- I remember after she was put on ECMO, now she looked very different from the normal, healthy Lil that I knew.

I went in and saw her, and she was swollen, and there were these tubes running in and out of her body, her blood's being pumped out, and it was just nightmarish to see that situation, to see her body at this point.

- I was about a mile from the hospital, and there's lots of forests and woodland around in Chapel Hill, and a solid white deer crossed the road in front of me.

And I grew up in a rural setting and I have never ever seen a white deer.

So I went to the hospital and things were pretty status quo.

And that morning, I was sitting, looking out the window, and Matt called.

I was looking out her window as I was talking to him, and there was a hawk that was flying in circles above her window.

And it started up really high, and it would circle down and go down and then go up, and it did it at least three times.

And between the white deer crossing the road in front of me at 3:30 in the morning and the hawk circling above her, it was pretty clear that she was aligning herself with the passing from this earth and she was getting, she was getting help.

She was being helped by powers that are so far beyond our minuscule human brains that we have no ability to see or know those kinds of things.

And for that matter, we miss it, even when it's right in our faces.

(melancholy piano music) (melancholy piano music continues) - [Eric] "Dr. Charles told us that if we wanted, he could discontinue the sedation so that Lil could be conscious briefly before he stopped the machine.

I looked at Cate and Hannah to see what they thought, and the look on their faces mirrored my own feelings.

I couldn't imagine anything more cruel than to wake her up, only to learn she was about to die.

Even though it would've been priceless to have one more conversation, it would be kinder to keep the sedation on.

She'd always seem to be resting comfortably, so this would allow her to slip away quietly and peacefully.

When we finally told them it was okay, they turned off the oxygen to the ECMO machine.

For a brief period, her sats stayed up.

I hoped maybe there'd be another miracle, that her lungs would start to work.

But soon her blood pressure started dropping and then her pulse rate decreased.

She never struggled or seemed to suffer as we said goodbye.

Then her heart quietly stopped beating."

(melancholy music continues) - [Lillian] It's a strange thing, dying, that is.

My parents and sister couldn't leave the room.

I'm pretty sure my dad was thinking how could he move on, go on living?

But he knew I'd tell him, "Dad, it's a waste."

- Family and friends have said their final goodbye to Lillian Chason.

Funeral service was held for the Barrington teen this morning.

- [Reporter] Freshman Lillian Chason died yesterday after being in critical condition for weeks.

Lillian Chason's friend say she was so happy at Carolina.

She'd recently been cast as the lead in a play to open next month.

- Lillian was an amazing friend.

She was full of compassion and she would always be there for you.

- [Reporter] Now they are trying to be there for each other.

They thought things would turn out differently.

- I remember vividly thinking I don't think I'll ever have a friend like that again, that something really special had just left and I don't think I'd ever see it again.

Yeah.

- Shortly after Lillian had passed, I was actually exhausted and I was emotionally drained.

And I decided just to go home and I just went to bed, and I probably was in bed for about 24 hours.

And essentially just replay in my mind what else could we have done?

- He (sniffles) dedicated himself to Lillian for 29 days in a way that I can't imagine any doctor ever being able to do that, to the extent that he did that.

- I think we left no stone unturned in trying to save Lillian.

And at the end of the day, the disease process was overwhelming and her lungs never really did recover.

- You know, there wasn't room for anger, even afterwards.

I'm convinced that if anybody could have helped her to live, that he could.

- I essentially had been brought in almost as part of the family by the end of the process.

And I really learned and got to know Eric and Cate more and more, I've got to know them more and more over the years.

But just over the time course of when Lillian was in the hospital and watching their struggles, I just was, I felt a connection because I have children myself.

- There was another period later when she was in her teens where she had what she would call her feelings.

And she's told us she had these weird feelings that she was going to die, and Cate actually brought it to her therapist.

And I never talked to Lil about how that got resolved, but, you know, she had these sense that there was something wrong.

- A couple of times in my life, particularly when we were out west 'cause there's more of it out there, I saw a psychic.

Towards the end of the reading, she said to me, "You will outlive one of your children."

Lillian was probably about, if I have a guess, maybe five?

Four or five?

So, that was in my consciousness.

- What comes through in looking back at her and her life is how genuine she was, her passion for living, her wit, her cynicism, her wisdom.

She clearly knew the world and had this perspective on life that I think most people never have in their life.

- There was something unearthly about her.

Maybe mystical is the word?

I don't know.

- But having her picture in my office is a constant reminder, one, that in as much as we try our best, we don't always win, two, that she's an inspiration to do better, and three, that her memory is never forgotten, and that hopefully to inspire me to do the very best I can at all times.

- You go through childhood having this person that you've shared these memories with, that I just think about all the missed opportunities where it would be really lovely to talk to her.

And I really wanted to see what she did with her life and share that with her.

I think that's the hardest part is I just, I don't get that.

- (sniffles) My job, my job isn't over.

I'm still her mother.

And there's no way (sniffles) to explain, there's no way possible, there's no possible way to explain how a mother (sniffles) when they lose their child still has to be a mother.

You have duties and obligations to tend the spirit of your child.

(sniffles) - Asking what is the point is really a profound and tough question.

The point is, I think, not to forget what a remarkable person she was and what a wonderful life she had, and to use that as a reason to think about how can we be better and how can we go on and how can we help other people who are dealing with loss?

Because otherwise there is no point.

- I believe that there's certain people that are born to this earth to come here to help other people to see.

Her death has taught me so much more than I would've known otherwise.

She does live within me.

- Man proposes and God disposes.

We all have plans for our lives, but really we do not know what destiny will bring.

But I think the key really is to remember how Lillian lived as opposed to why or how she died.

- "So, these days I'm still teaching and doing research, but I'll never be the same person I was.

There will always be a hole in my life that may be covered over but can't be filled.

With Lil's passing, I lost the illusion that life made sense, that we can count on anything.

If it wasn't for wanting to be there for Hannah and Cate, I'm not sure what would've kept me going.

Days passed no matter how we feel about them, so here I am."

- Started out very analytical, his journals, kind of this is what happened so that I can tell her later.

And the year after she passed away, he made it more into a narrative, and I think that was really born out of his love for her and his desire to share who she was with the world.

- [Lillian] I can see my dad furiously scribbling down his notes and observations.

It was his way to express and manifest his hope and optimism and love for me.

I'm glad he did, and I'm happy he shared my story and especially these words, these words to remember: Love is meant to be shared by all.

We need to love those around us while we still can, and hopefully that love will spread to others.

- When Lil died, I became a recluse in the house for months and found myself writing poetry because I didn't know any other way to survive that.

Eric wrote the book "Breathless," and I think there's a few of them in here, but this is the last one in the book.

It's called "The Next Empty Thing."

"Dear God, Let me live with my altar hollow, the kind of nothing that talks about Lillian's body out there in the box.

With no need for one more glimpse because one more glimpse would be just that, nothing more.

Let the box and its contents roll over into that next empty thing.

She is now what she always was and always will be, sweet flesh below earth's edge and the image in the yellow-framed picture.

She, with script in hand, silently moves through us.

She, the perfect actress, her words confetti, tossed high and forever into the air.

Dear God, please let Lillian be her story, her story enough."

- [Interviewer] And what did God say when Lil came?

(melancholy music) (Eric chuckles) - What would God, I hope God said to Lil when she got to heaven, I just, I hope He just opened up His arms and gave her a big hug.

And He said, "I love you."

He said, "I'm sorry.

You did the best you could and you did what you needed to in your life.

And you're home now."

(melancholy music continues) (Eric sniffles) You're right, that was a tough one.

(melancholy music continues) (gentle piano music) (gentle piano music continues) - We're not shooting yet.

- No, I'm talking about the- - No, turn your head away.

- I'm very, very photosensitive.

- Yeah, turn your head away for now until- - Well, I'm gonna do like this until... (serene music) (serene music continues) (serene music continues) (serene music continues) (serene music continues) (serene music fades) (upbeat music) - Hello and welcome to "Conversations with New England Filmmakers," where we speak with filmmakers about their ideas, inspirations, and artistic processes.

Dante Bellini is a Rhode Island filmmaker and director of "Lillian."

He's joined by Eric Chason, Lillian's father and author of the book "Breathless."

Thank you, Dante and Eric, so much for being with us today.

- Thank you.

- My pleasure.

- I'll start with you, Dante.

Can you tell me about how you discovered this story?

- It was around Thanksgiving of 2019 and a mutual friend of ours gave me the book.

And I read it immediately, and I was struck by the raw emotion of the book.

And it was, up until that point, one of the, just the best narratives I'd ever read.

And I gave it to my wife, she read it immediately, and I read it again, and it was just riveting, and I felt like I had to do something with it.

It was a remarkable story of both courage, incredible sadness, and inspiration all at the same time.

And when I did a little background on Eric, you know, I found out that he was an engineering and physics professor.

He was a, you know, a Sheldon Cooper kinda geek guy.

(Eric chuckles) And I couldn't believe that the prose and the poetry of his words came from that kind of mind.

And I just felt like I owed it to the world to do something with this book.

- Eric, how did it feel when Dante reached out to you?

- I was totally surprised.

The call, I think it was an email, came out of the blue.

And he introduced himself as having, from our mutual friend, heard about it.

And I had finished the book, and we had a book launch in October of 2019, so it was out there, and I was trying to do book readings and things like that, that's where our friend saw it, actually, it was at a book reading.

And, you know, it's hard.

I'm not an author.

I wrote this because I had a story I really needed to tell.

It wasn't 'cause I wanted to just write a book.

And, you know, to just get that connection where somebody read it and said, you know, "This really resonated with me," was just a great feeling.

And so of course we said, you know, "Let's get together."

And then the next week after he called, the week after that, COVID had hit and everything got shut down (chuckles) and we didn't meet for about a month after that.

- So when you reconnected after COVID, how much time did you spend together getting to know one another?

- We talked a lot, but we started shooting it around October of that year, of 2020.

And, you know, we interviewed a lot of people, obviously Eric and Cate and Hannah, their daughter, and we talked to a few other people.

And then, you know, we just kind of, as you know, you know, there's a gestation process and just trying to see what this story, where this story was gonna go.

It's based upon the book, but it's really not in a way as well.

And so it sat around for about a year and I finally did a rough edit, and it was good, it was good.

And we put it together, it was about an hour and a half.

And we screened it at a few places and, you know, we had lots of people watch it, and it was okay.

People really loved it, but I wasn't really all that happy with it.

I thought it was too long and it told too much of a whole movie.

It wasn't commercially viable either, I thought.

It was a good story.

And so then I told Eric and Cate, to their dismay, that I'm just putting it in the drawer for a while.

And it wasn't until, it wasn't until mid-2024 that I took it out again.

And Eric Latek, my editor, and I decided that we knew how to cut it and not lose anything, and that's what we did.

- Can you tell me a little bit about the process of working with an editor on this film?

Because I hear you- - Yeah.

- Right?

The story that, what fascinates us and we wanna share so much of that, right, and we have to find a way- - Yeah.

- To condense that just to the very nugget.

And I think editors are critical to that process.

- Well, when you have an editor like Eric Latek, you have someone who is both brilliant at what he does and is an empathetic soul as well.

And he and I have (chuckles) the dubious or honorable distinction, we haven't decided what it is yet, that we've done a lot of sad stories.

But within those sad stories, in almost every case, there is light, there is some glimmer of hopefulness, of inspiration of something, and that's what we try to find, and without judgment, but thinking that it is important, it's an important piece of the story.

And in the case of "Lillian," based on "Breathless," you know, that story was of this community that surrounded the Chasons, first and foremost, but then about the resolve within the family and the incredible memories and archive that they kept of this family growing and thriving and really having this wonderful, loving, intelligent relationship.

It was something that I, you know, was wonderful to look at but also curious as a filmmaker because they were an intellectual family in many ways and they had a certain interesting way of dealing with each other.

And so that is all that, that's a lot of the stuff that we try to insert and stick in there.

And Eric is really good at finding images that will accent those pieces.

- It's interesting because you are not involved in the process of creating this film.

So what was that relationship like in terms of trust?

- Mm-hmm, yeah, I think it was basically we, when Dante came to us, it was clearly he came out of, you know, a desire to tell this story that we wanted to share with the world.

And we basically trusted him that, you know, that he was gonna take the material and do with it.

We didn't really, I hope you feel this way, we didn't really tell you much about how we wanted you to do it, right?

It was completely up to you, with the exception that we wanted to see it in the end.

And, you know, just let him run with it and gave him as much support and much access to material and things like that as we could.

But it was pretty much, you know, we decided early on, like, this isn't gonna work if, you know, if we have a strong opinion about we want it to be.

This is Dante's project.

And as long as he treats Lillian and the whole story with respect, which we expected he would and he did, that was fine with us.

- As you know, Tracy, there's an inherent need to be honest in doing this.

And there are things within, you know, every story that we tell that is, you know, maybe you don't, maybe, you know, the person or the subject or, you know, family may not want told.

And, you know, in the case of this film, I can tell you, you know, honestly, and I think Eric knows that, Cate didn't wanna be in it.

Cate didn't wanna be part of the book.

And I totally understand that.

And Cate and I have a very interesting relationship, that is, we love each other a lot, but, you know, she puts me in my place (Eric chuckling) and I try to put her in her place, but it's not always successful.

So it was hard getting her to sit down and to do it.

But when she did it, because I think in the end she did trust me, as you know from watching the film, there is an immense presence about her.

She is as mystical as Lillian is to me.

Cate tells a story in very few words, and you know that the story is completely, completely honest and forthright and she's feeling it within every fiber and cell in her body.

And, you know, to me, to me that's all we can ever ask for when we're filming something, right, when we're doing an interview, that people are honest and they can somehow share that in a very engaging way as well.

And that's what Cate did, you know?

So she went from, you know, not wanting to do it to doing it reluctantly and being a very important part of this film, obviously.

- Tell me a little bit more about Cate.

- So, Cate is a much more creative person than I am.

- She's gonna hate that we're talking about her.

- Yeah, she's just- - Sorry, Cate.

(Eric laughing) I'm curious.

- Love you, honey.

But...

So she is... As a, I'm a professor, and so I advise students about their career paths, and mine has been very linear, right?

I like, you know, I went to grad school, I got a job.

Cate's has been much more interesting.

And I tell them that's why they contrast us, because there are different ways to get to where you should be, but she got there a very different way, but it ended up exactly where she'd be.

She started off getting an MFA in painting, so she's a painter, it was her real passion.

Took time off to raise the kids, got a degree in counseling before that, but ended up becoming an acupuncturist because that was something that really helped her.

And so while the kids were growing, she went back to school and became an acupuncturist and we moved to Rhode Island.

She practiced as an acupuncturist for 20 years.

So, she's much more in tune with her feelings and the creative process and things like that.

And when Lillian was ill, she was, she had never been a poet to my knowledge before that, but she started having to express her feelings through poetry and just has this beautiful book of poems that she wrote that resonates so incredibly with people, that really expresses her feelings.

So she's much more sort of the person you might have expected (chuckles) to do this kind of thing.

But I think when you see the film, it's extremely emotional for her to have to talk about these things.

And when she agreed to do it, she did it because she thought that Lillian would want her to.

And so I think that that's always been the thing for she and I and Hannah that's guided us was always to think like, well, okay, you know, I dunno, I dunno, I've never been here, we never did anything like this, what do you think Lillian would want?

And she wanted to tell Lil's story to get out there, so she was willing to do this, which I know is very hard for her.

But I think, I gotta say one last, I think she was phenomenal.

(Dante chuckles) She's just, I can't, you know, I just can't believe.

Every time I see it, I can't believe it, what she did.

- She said something so profound that I had never heard before.

I think we all think it- - Mm-hmm, mm-hmm.

- But she said one thing that was, like, incredible.

And she said, "Even if your child isn't here anymore, you can't stop being a mother.

You have to tend to that child."

And to me, that is the seminal part of this film is her saying that, because it is, it's the, like, the absolute most truest, biggest part of love, right?

That it transcends being together, right?

It's always, it's everything, it's all the time, it's everywhere.

And she articulated that, and I can't believe that she did it on camera, you know?

She had the sense of and the presence of mind to say that.

- Mm-hmm.

- There was a moment where she talks about feeling Lillian's pulse on an acupuncture point, right?

And that is a really potent moment because it's hard to stand up to a doctor.

- Yeah.

- It's hard to stand up to a doctor you trust.

- Yeah.

- And she just made that leap to say, "Hey, look, I know my kid and I know her body and I feel this happening."

And that really struck me.

- Well, that's a really important juncture in the film as it was in the book because Lillian was coding and they were ready to call it, they were ready to give the time of death.

And Cate did what she did with, you know, feeling for the pulse in Lillian's foot, and she just held her ground in there.

And it was a moment that, I think, many of us would not, I mean many of us would not stand up to a medical establishment and say, "You're wrong."

She did.

She was right.

And it's pretty amazing.

- It is amazing- - Right.

- It really struck me.

- Right, and it's- - It really struck me.

- At that point also that we think the story is gonna go one way or another, right?

- Mm.

- And the reason I wanted to tell this is the reality was that's exactly how we felt.

You don't know how things are gonna turn out.

And often when you tell a story in hindsight, you're too flavored by the way you know it turns out when you tell the story.

I really wanted to try to get that feeling across of being in the moment of what it felt like for us to be there because that's the thing that, you know, that I just had to share about Lillian's story.

- There's a moment that you shared with me where you had to make a really difficult choice around your comfort versus Lillian's comfort.

And as a parent, it's the most extraordinary, courageous moment that you were holding her, you were holding her space rather than thinking about yourself or what your needs might be.

- Yeah.

- Can you tell me a little bit more?

- Sure, of course.

So we had a very good relationship with Dr. Charles, who was the head in charge of ECMO.

And that's why it was unusual for, he had always told us, you know, "When I tell you things, you have to do them, you have to accept that."

And so Hannah keep going against his wishes and saying she's, this is I'm going backwards, that she still had a pulse, was not, you know, we didn't try to be difficult with Dr. Charles, we didn't try to, you know, we had very few occasions where we disagreed with him.

We were really impressed with him and proud of all he did for her.

But at the very end of this story, unfortunately, he asked us, when we knew that Lillian's organs were failing and that she wouldn't be able to survive, he asked, and so we were reaching the point of where we're gonna allow the machines to be turned off and we knew that she would pass away.

And he said she had been sedated for three weeks, and he said he could turn off the sedation and give her a chance to come back to consciousness so we could have a last conversation with her.

And we just, you know, I don't know what Cate and Hannah were thinking at the time, but I know I just thought that would be the most difficult thing to do for Lil.

And I looked at them and they both agreed, you know, this is not something that would, although it might feel good to us to have a chance to talk to Lil, this would not be something that we could do, you know, that we could allow her to go through, so we decided not to.

So we ultimately had to just turn the machines off and then, you know, prayed for a miracle.

But unfortunately, pretty soon after they turn the machines off, she passed away.

- I have this philosophical discussion with people all the time based on the movie "A.I."

by Steven Spielberg.

And if you could bring somebody back that had died for 24 hours, would you do it?

Like what happened in that film.

And I always say that I just couldn't do it because then they would be gone again after 24 hours.

And so when we were constructing that scene, it was just, to me it was like kind of the same thing.

It just, you wake someone up to say goodbye, but having them know that they're going just seemed to be the cruelest thing ever.

So it was, again, another moment of profound unselfishness by Hannah, Cate, and Eric, in their total and all-consuming love for Lillian, that I just found remarkable.

- And I'm curious, in terms of the book as well, was it a way to process for you what you had experienced?

- Yeah, so the process, it didn't start out me knowing, of course, I was gonna write the book.

What happened is that I'm just a notetaker, right?

So when we were in the hospital, so much was going on and so many things were happening that I thought, I mean, I didn't really need to take notes for any reason, but just because I told myself that it would be nice if I have a notebook that has all these things 'cause I won't remember.

And I can tell Lil when she's better, you know, these are the things that were happening and you wouldn't believe, you know, this is what they did, and blah-blah.

So I bought myself a spiral notebook, and I just, you know, every day I wrote down notes about what was going on.

And so when we came back from the hospital that first spring, Cate and I were pretty, I don't even know how to describe the way we felt, but we, you know, kept to ourselves in separate parts of the house.

She went to, did a lot of painting, poetry writing, things like that, and I sat in my study.

And the first thing I thought is like, well, I might as well take these notes that are illegible, 'cause my handwriting's horrible, and transcribe them into something that I could have.

And then I'll have like a chronology of it so I can, I filled it, it wasn't like a verbatim, I actually filled in some extra things that I, you know, that I hadn't put down at the time.

So I had a thing, like a journal of like, this is what happened this day, this is what happened this day.

And I think I might have even shared it.

I know I shared it with at least one friend who was interested to hear, have a chance to hear the whole story.

But, you know, didn't think it was something that people would wanna read about, you know, which I completely understood.

And then over time, I began to think like, I don't really, I needed to tell the story of her illness because that was such a, you know, incredibly powerful story that I wanted to share, but what I really wanted to do is tell the story about Lil.

And so I started thinking, okay, I can't, I don't know how to write a novel or a full memoir, but I can write, like, five pages.

And so I would just take separate incidents of things that I remembered from her life and I would turn them into sort of self-contained stories about, there was one where, you know, when we went, she was a softball pitcher, and we went to a softball pitching clinic.

And, you know, they had a woman who was teaching it who pitched at 60 miles an hour or probably more.

And Lil volunteered me to catch (laughs) for her.

And so, like I was terrified that this, I mean, if you've ever caught a really fast fastball, it's really hard.

So just those kinds of stories, and I could tell that about her being a pitcher.

There were stories about knowing that she was losing her eyesight and finding that out and dealing with that.

So, eventually I put together a whole bunch of these, and I realized, you know, there's a chronology here about, that was the chronology of her life.

And then that was sort of the arc of her life was mostly finding out when she had this eye disease called Stargardt, so she was going blind.

And the chronology of from when she knew she had Stargardt to going to college was sort of one story arc, and then there was the other arc of her being in the hospital.

And so I merged those two together, and I go back and forth between her life and things that happened in the hospital.

And it turned out that was, I think it was a narrative that, it certainly was able to tell the things that I wanted to tell, so that's how I wrote the book.

- I'm really looking forward to reading it and learning how it pairs with the film.

It's such a beautiful story and told so well, Dante- - Thank you, thank you.

- In a documentary, much appreciation for sharing that, and much appreciation for both of you for being here today.

That is all the time we have for today.

Thank you so much for joining us for "Conversations with New England Filmmakers."