Dr. Jonathan Weinkle talks with Peabody Award-winning documentary filmmaker Judith Helfand about turning personal illness (DES-related clear cell adenocarcinoma), family secrets, and intergenerational trauma from the 1918 flu pandemic into powerful stories. They explore illness narratives, the ethics of filming intimate moments, the cost of unprocessed grief, and concrete lessons for clinicians on presence, sadness, and reclaiming memory.
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What happens when a young woman discovers she is a “DES daughter,” develops a rare cancer, loses the ability to carry a biological child, and decides to put her own life and family under the camera? And what does it mean when, decades later, a hidden photograph and a COVID-era Zoom shiva unlock a century-old family silence around a 12-year-old girl who died in the 1918 influenza pandemic?
In this episode of Healing People, Not Patients, Dr. Jonathan Weinkle sits down with Judith (“Judy”) Helfand, the filmmaker behind the Peabody Award-winning A Healthy Baby Girl, the “toxic comedy” Blue Vinyl, Love & Stuff, and the in-progress multiformat project Good Mourning Ethel. Helfand traces how her mother’s use of diethylstilbestrol (DES), the subsequent diagnosis of clear cell adenocarcinoma, radical surgery, and the fraught mother-daughter relationship became both a personal crisis and the foundation of her documentary practice. She describes volunteering for a DES film only to become its subject, the decision to film her own recovery and family dynamics, and the rituals (kaddish, mikvah, invented grief ceremonies) she created when conventional mourning structures did not fit the loss of fertility and “unborn children.”
The conversation then pivots to her current work: recovering the almost-erased memory of her aunt Ethel, who died at age 12 in the 1918 flu epidemic in their New York tenement. Helfand explores how quarantine, the absence of shiva, wartime and later historical silences, and a grandmother’s protective isolation turned private catastrophe into “Bubbe’s meshugas.” She connects that unresolved grief to patterns still visible in families after COVID, and argues that personal, intimate storytelling is one of the few ways humans can hold large-scale historical trauma without reducing it to statistics.
Throughout, Helfand and Weinkle discuss the ethics of the camera in the sickroom, the difference between being “visited with” and being processed, the power of a clinician simply allowing themselves to be sad with a patient, and the Reconstructionist Jewish insight that every ritual was once new. The episode offers clinicians a vivid model of how personal narrative, ritual creativity, and the refusal to let grief be minimized can deepen presence and care.
Top 3 Takeaways
About the Show
Healing People, Not Patients explores ways to enhance medical practice by infusing it with compassion, humanity, and a deeper sense of purpose, aiming to help healthcare professionals rediscover the "soul" of their work. Framed around the four questions of the Passover Seder, it probes how to transform medicine for the better, promoting an empathetic and supportive approach that empowers patients to create meaningful, sober lives, while drawing on Jewish teachings about community and friendship.
"Our theme song, 'Room for the Soul,' is available on Bandcamp at https://jonathanweinkle.bandcamp.com/track/room-for-the-soul."
About the Guest
Judith Helfand is a Peabody Award-winning documentary filmmaker, organizer, and educator known for her open hearted, radically transparent approach to nonfiction storytelling. Her films include the autobiographical A Healthy Baby Girl (1997, POV/Sundance) about her DES exposure, clear-cell adenocarcinoma, hysterectomy, and family dynamics; the Sundance Award-winning “toxic comedy” Blue Vinyl (2002, HBO) on polyvinyl chloride; Love & Stuff (2022, POV); and the forthcoming multiformat project Good Mourning Ethel, which recovers the story of her aunt who died in the 1918 influenza pandemic and the multigenerational silence that followed. She co-founded Working Films and Chicken & Egg Pictures and is a member of the Academy of Motion Picture Arts and Sciences.
Connect with Judith
https://www.documentaries.org/films/good-mourning-ethel/ to see the trailer and contribute to making the film
https://www.pbs.org/pov/films/ahealthybabygirl/
About the Host
Dr. Jonathan Weinkle is an internist and pediatrician who practices primary care at a community health center in Pittsburgh. He strives to be a "nice Jewish doctor" focused on patient-centered healthcare, emphasizing effective communication and holistic well-being.
He teaches the courses, “Death and the Healthcare Professions” and “Healing and Humanity” at the University of Pittsburgh, authored the books Healing People, Not Patients and Illness to Exodus, and runs ‘Healers Who Listen’, where he blogs on healing and Jewish tradition. Once an aspiring rabbi, he now integrates faith and medicine to support other physicians and his own patients.
🌐 Website: healerswholisten.com
🔗 LinkedIn: linkedin.com/in/jonathan-weinkle-3440032a
📸 Instagram: @HealersWhoListen
📘 Facebook: @JonathanWeinkle
[00:00:00] In 2026, we're conditioned to think that our actions determine our health. The army of wellfluencers, each with their own cure-all smoothie or surefire exercise routine, have people convinced that getting healthy is just a matter of willpower and the right silver bullet. Mainstream medicine isn't immune to the idea either.
Every disease prevention strategy comes with its own set of lifestyle recommendations about diet, exercise, stress reduction, and healthy relationships. Our own behavior is definitely responsible for some of our health outcomes. But far more often, our health destiny is cast by forces beyond our control, even our knowledge.
How much kale you eat or how many planks you can do is far less of a factor than your job, your zip code, your gender, or your race. Sometimes your health may be determined by something your mother was told to do so you could be born in the first place, and sometimes it is a literal accident of history.
My guest today is the documentary [00:01:00] filmmaker Judith Helfand, who's made a career of creating films about environmental health and environmental justice. She's a Peabody Award winner and is best known for her open-hearted, artfully self-deprecating, you'll hear that on the show, and very transparent approach to nonfiction filmmaking.
Her bold use of the first person, plus her signature warmth, candor, humor whenever possible, which is often, and investigative rigor has enabled her to take on some of the most pressing issues of our time: persistent organic pollution, Blue Vinyl; transgenerational toxic chemical exposure, A Healthy Baby Girl; to mother-daughter love, Love and Stuff; the intersection of race, class, and the climate crisis, Cooked; and now the long-term impact of extreme grief, Good Morning Ethel.
Judith's films tell stories of what happens to individual people and families when environmental forces come to bear on their lives where, until just a moment before, nothing ever happens. When not making films of her own, she's building the field of filmmaking and teaching others. [00:02:00] Judith is the founder of Working Films and Chicken & Egg Pictures, and has created multiple spaces in which aspiring filmmakers can learn to pitch and launch their new projects.
Judith's first film in this genre, the PBS documentary, "A Healthy Baby Girl," chronicles the effects of DES, diethylstilbestrol, the world's first synthetic estrogen, on the babies born to mothers who took it to prevent miscarriage. Well, that's not quite the whole story. It chronicles the drug's effect on her and her family when, in the course of getting involved with making the film, she was diagnosed with clear cell adenocarcinoma, the known danger of having been exposed to DES.
We'll hear some of that story here so we can get to know Judith the filmmaker and Judith the person. This week, we're discussing a new film project, "Good Mourning, Ethel," that's M-O-U-R-N-I-N-G, which bridges 100 years of history and dives deep into a subject I spent a lot of time on this summer here on the podcast: grief.
We explore what happens when the world is caving in and doesn't allow the people caught in [00:03:00] the rubble to mourn their losses in the moment or spend any time remembering them afterward . Stay tuned.
You're not making a film about the making of the polio vaccine, but you're making a film about the human stories, which as a primary care doc, that's what I spend most of my time dealing with, is people's, quote, you know, what we call in the field if you read this kind of stuff that I read, an illness narrative.
How did you get into this space? I was ill. It's like you don't wake up one day and say, "Gee, I think I'm gonna look at the material life cycle of polyvinyl chloride, and along the way try to understand, like, how is it possible that, A, something so carcinogenic could actually be also that there's a threshold that's okay- and that the people on the inside are gonna work with this for a really long time until someone starts getting sick. And then once enough people get sick, then they're gonna be able to say, "Oh, look at that cancer cluster. They all have glioblastoma of the brain. That's interesting. I wonder what the hell's going on."[00:01:00]
And then it turns out, so did the lab rats, right? I only made that movie, it's called Blue Vinyl. I only, made that film because I made another film called A Healthy Baby Girl. And I wouldn't have made A Healthy Baby Girl if I had been a healthy baby girl. But that title's ironic, because I'm sure the first thing they said to my mother was, "Oh, Mrs.
Helfand, mazel tov. You have a beautiful, healthy baby girl. It's just what you wanted." And my mother said, "Oh, thank God. I knew I took that DES for a reason. I'm so glad I took that drug, 'cause without it I wouldn't have been able to have her." But unfortunately, that's not true. So even 11 years, 12 years before I was born, they knew that this synthetic estrogen, the first one ever created, so the guy got knighted for it.
He was in England. That when used with pregnant women, it actually was a teratogen, it was a [00:02:00] carcinogen. It malformed the reproductive organs of the children. They understood that it malformed the reproductive organs of the girls before they understood what happened to the boys, because it was the girls who started to get this very rare form of cancer called,
Clear cell adenocarcinoma.
So it's interesting. I think I was studying it right around the same time that your film came out, and it was actually- I think 1997. And I was learning this in '99 or 2000,
So what was interesting about that is clear cell adenocarcinoma was being used as an example of a particular phenomenon in pathogenesis, right?
In disease causation, right? It was saying, "Here's a thing that happens when you give certain things during pregnancy. There are consequences down the line
for the baby that's born ."
And that specific illustration of [00:03:00] diethylstilbestrol, female baby, and this very rare cancer that wouldn't happen in any other circumstance.
So I don't know that there's a direct line from your film to the Pitt Med curriculum of 2000, but not a lot of time passed and they had just revamped the curriculum, so I think it was on people's minds. And you know, I love taking that film to medical schools.
I would have made documentary films. I was working on a film about illness when I was diagnosed. I was working on a Frontline documentary called Broken Minds, and it was about the treatment and mistreatment of people with schizophrenia. so while I was working on that movie, I went to the opening of the movie about the women in the Lexington High Security Unit in Lexington, Kentucky, and a producer, dragged me over to meet these two women, and she said, "You have to meet them.
They're making a film about DES cancer. Didn't you tell me that you were a DES daughter?" And I said, "Yeah, I'd love to meet them." So I meet them, [00:04:00] and they tell me what they're doing, and I said, "You know, I have this really good job right now, and I have a little free time at night. I would love to volunteer and help you with archival research."
"I'm really good at that now." And they said, "Oh, that would be so great. We'll send you the proposal, and then you read about it, and then, you know, yeah, let's talk about it. But if you want to work for us and you're a DES daughter, you have to go get a checkup." And I was like, "I just had a checkup."
And you know that it's the first time in my life that I have been to my own gynecologist. Like, I grew up going to this DES screening center with my mother, and it was horrible 'cause she felt so guilty, blah, blah, blah. It was like I couldn't wait to wrestle my gynecological care away from my mother.
So here I am, you know, 24, 25. Finally, I go without my parents 'cause my mom felt so guilty about this thing that wasn't gonna happen that she couldn't drive. Mm-hmm. So my father would have to come [00:05:00] too. A- and so this was the illness that my mother was terrified was gonna happen to me, that when I was eight years old, she read this tiny little article in The New York Times about a doctor in Boston who had made the link between diethylstilbestrol and women who took it for anti-miscarriage and various sundry things, and the fact that it actually had made a real link to young women who were getting this very rare cancer that they'd never, ever seen before in young women.
They were having these horrific surgeries. And my mom, reads this, and At the time, I was eight years old. She says, "Teddy, I think I took this." And he says, "Come on, how can you remember?" And she said, "A mother remembers. I think I took this. I think I took this. I know I took this.
I took it." He said, "Well, just call Herb the pharmacist," right? "So he'll know." So my mother calls Herb the pharmacist, who's literally down the street from us, and he says, "Hold [00:06:00] on." And he goes and he checks some card catalog, and he says, "I'm so sorry, Florence, you did." And, my mother says, "Well, what am I gonna do?
She's eight years old." And he's like, "I don't think you could do anything. You have to wait till she gets a period, and then you take her to the doctor." So my mother said from the time I was 8 till I was 13 and I started to menstruate, she was basically looking at me as I grew up as if I was this ticking time bomb, and she was terrified.
Mm-hmm. And she said, "Judy, I would be anywhere near someone who was, like, a medical doc..." They could be a PhD, and I would say, "Oh, you're a doctor. Let me ask you a question." And the question was, "When do I take my daughter to the DES screening center?" Mm. 'Cause she knew that it existed.
She was just waiting. And so, interesting enough, and I think you'll really appreciate this so I'm, like, 13, 14. I go skiing. I break my leg first thing in the morning. I come home with this atypical fracture of the tibia and the fibula, this huge [00:07:00] cast up to my hip. I somehow get home late at night. They get me home.
My parents are away. They come back. They see. Oh my God. All right. I have to stay home for, like, eight weeks, can't go to school. And so I'm so scared my brain is gonna become mush from watching too much television and stuff, that I put myself on this very very select diet of Channel 13, good talk shows, and that's it.
Mm-hmm. Okay, so but that meant that I guess I could watch Good Morning America, I don't know. But Phil Donahue had this tiny little... Before he was like Phil Donahue, he had this tiny little show- ... on, I think it was Good Morning America or something like that. And so he comes on, about two hours before I watch this thing, I'm in the bathroom and my mother has a Reader's Digest, and I read a story about DES cancer, and I'm like, and I read a story about the thing that like, it just [00:08:00] sends this shockwave through me, and for no reason, I don't know why.
Mm-hmm. But the thing about it is the irony. The irony, it's like the first time that like irony and feminism register like in the same space, right? And I'm 14, and I'm like, "Whoa, a mother took a drug to have a baby, then the baby grows up, and then the baby gets cancer, and now the baby can't have a baby because of the drug that the mother took to have the baby.
And now the baby's a woman who can't have a kid, and she's beside herself. And the mother feels guilty, and they're not talking to each other." And it's like this thing, it's like this is so horrible. And like literally an hour later, I'm watching Good Morning America, and there's Phil Donahue.
And and he has this little roll in and he's like, "A, a mother took a drug to have a baby, and the baby got cancer from the drug, and now the baby can't have a baby. I'll be back in [00:09:00] five. Stay there." And I'm just like, "Oh my God. How could I have read that and now I'm gonna see this?"
before they can read your mind, and you get those little advertisements, right? For like, how do you know I need a vet and my bunny has a pre-existing condition? How did you know that? Right? So, 'cause that's all I get these days from...
Anyway but it's about medicine, so I'm not really off, right? So he comes back on, and there's this woman, and her name is Joyce Bickler, and she's like from Ohio or Midwest somewhere, and she's with her mother. And her mother's there, too, and she's talking about stuff. like what is a vaginectomy?
Like, how can you have a va- well, how is that even possible, right? Like, oh, my God. This is insane, right? And he's like, "Okay, Mom, I feel so bad for you, but let's talk to your daughter. How you doing?" She's like, "Well, I'm very angry. You know, my mother didn't do anything wrong.
My mother wanted to have me. I have [00:10:00] no problem with my mother. I love my mother. Right, Mom? You're okay." And she's like, "I'm okay. it's the pharmaceutical company that I'm pissed off at. They shouldn't have done that. They knew. They absolutely knew." You know, I'm listening to all of this, and you know, Joyce had written a book.
And so because she wrote a book, she was on. So he's like, he has the book in his hand, and he has Joyce and the mother. And, she wrote this book about her life, which I later read many, many years later after I met Joyce at a support group for women with cancer. But here I am, like the first time I really understand this is because a woman, a young woman, is on TV, is not afraid to talk about her vaginectomy on, you know, national television, primetime, who is very clear who the villain is, who's very clear that this is not her mother's fault and who is very clear that the only way forward is with advocacy and alerting [00:11:00] everybody who took DES that they have to get checked.
Right. So my mom comes home later that day from work. She's, works in a library. And I say... And I'm on a walker because I can't walk. I need this walker. So I'm like this indignant 14-year-old- ... who's just learned something that is so big and important 'cause it has nothing to do with her.
And it's like the first time I'm aligning my gender with some sort of kind of politic, with this understanding that, like, irony is really interesting. Irony really works. Like, without the irony, I don't know if I would even remember this. And and I say, "Mom," and I'm like banging my walker, and I'm like, "You're not gonna believe what I learned today.
Mom, it is incredible. It is so horrible, and it's so weird, right? It is so ironic. these women took this drug to have babies, and now some of the babies can't have babies 'cause they're getting this rare form of cancer. And the [00:12:00] pharmaceutical company, I think they even knew it, Mom. Can you believe this?
Can you believe this?" And my mother just gets this big tear, and it just starts to roll down her face. And she gets really quiet, and, like, she gets, like, this gray and ashen looking. And I'm like, "What's wrong with you? Did you know about this? Have you heard about this?" And she's... "Mommy, why can't you talk?
Mommy, what's wrong? What, like you didn't take this with me or something, did you?" And then she shakes her head yes. And I was like, "When were you gonna tell me?" And she's like, " I was gonna tell you when you got your period, but then you broke your leg. And then I, like, I was gonna tell you, you know, and then it was like, then I was gonna tell you when you got the cast off.
And then, you know, I don't know, Judy. You know what? I always knew somehow you were gonna hear about this, and you were gonna come and talk to me first. I just knew it." And she said, "But now that you did we have to go visit this place called the DES Screening Center, and we have one in Nassau County.
We're very lucky, because there's so many people here who took this drug." [00:13:00] And, you know, and that was the beginning of this thing. And they told me at the time, "Oh, Mom, oh, Judy, you know, you've nothing to worry about really, 'cause if you don't get this cancer by the time you're between 18 and 25, if you don't get it then, like really, if you don't get it by the time you're 25, I mean, you don't have to worry.
I mean, you probably don't even have to worry if you don't get it till after you're 18. You know, after 18, if you don't get it then, you don't have to worry. So, you know, I turn 18, then I turn 19 and 20, and then, you know, and then I'm like 25, and I'm like, "Yes, I'm not gonna get it. The only thing I have to worry about is having a really hard time having a baby," because that seems to be this big problem for everyone, 'cause they have these malformed reproductive organs, and T-shaped uteruses, and all this crazy stuff.
But it didn't seem like... I didn't know what... I didn't- For this one drug, like this was- Yeah ... an outlier rather than a, i, it wasn't a paradigm. That's the thing. I didn't understand it as a paradigm until, you know, then I'm like 25 years old, and then I get [00:14:00] this cancer, and I get this cancer because I volunteer to work on this movie, and then they say,
When was the last time you had a checkup?" And I said, "Well, I just had one with my own gynecologist for the first time in my life. And do you know she looked inside of me and she said, 'You're beautiful.'" She said I look beautiful. And the girl goes, this Darcy Peak goes, she says, "You know, no one should ever say that to a DES exposed woman.
I mean, you just don't say that to a DES daughter. You never say you look that... How could dysplasia look beautiful? You have dysplasia, right?" Mm. And I said, "I definitely have dysplasia, and I definitely have gotten, a little pinch every single year that I've ever gone to the doctor. I've gotten, I guess what you would call a biopsy.
So yeah, and I get to like watch myself on like the equivalent of Nova, and, you know, it's kinda interesting, and then I have to go out and deal with my guilty mother." She said I look great. And she said, "Well, if you wanna work for us, you have to go to our doctor." So [00:15:00] I went to her doctor and on a Friday, and he takes the little pinch like always happened,
and on Monday he calls me into his office, and it's like around 11:00. And before I get there, like on the phone, he says, "Judy, you live in New York City?" I said, "Yes." He said, "Do you have a lot of good friends?" And I was like, "Yeah." And he said, "Do you have a therapist?" And I said, "I do." And he said, "How long have you seen her?"
And I said, "About five years." And he said, "Good. You're gonna n- do you have family here?" I was like, "Yeah." "Good. You're gonna need everybody, but come on over." I was like, "Oh my God, really?" So I go across the park, and then he cannot get the words out of his mouth I think it would have been much easier if he told me over the telephone.
Obviously he didn't. But he couldn't say, like I get there and I'm like, "Okay. So what is it?" He's like, "Well, you have a tumor." And I said, "Okay. Well, all right. Fine. You know, just, can you just take the [00:16:00] tumor out and leave everything as is?" And he said, "No, we have to remove the tumor." And I said, "Well, okay, but can you just like leave everything else and like remove the tumor and then just leave everything else?"
And he said, "No, we have to take a very big margin. we can't just take the tumor." I'm like, "Well, how much do you have to take?" And he's like, I'm not gonna be your surgeon, but he's prob- they're probably gonna have to take a lot more than the tumor."
And I'm like, "Are you trying to tell me I have to have a hysterectomy?" And then he sort of starts to cry a little bit, which is the nicest thing a doctor has ever done in my presence. truly. I mean, now in, in retrospect I'm like so touched that it was hard for him, and, he said, "Yeah." I was like, "I have to have a hysterectomy?
They're gonna... that means I'm not gonna be able to have a child." And he's like there's lots of way to have children, but no, you know, you, you're not gonna be able to biologically have a child." You know, and at that point, that's like when like the room starts to spin around and all I could think about is my bubbe, who's the [00:17:00] person that I'm making this movie about now.
And it's weird. It's like I'm, well, it's like my bubbe and my mother, and it's like I am not thinking about me at all. you know, the fact that I am now have a, I didn't even say to him like, "Am I gonna die, Doctor? How bad is this cancer?" Like, I didn't ask him anything like that. Yeah. All I could think about was, "Wow, you're not gonna be able to have a baby that looks like your bubbe."
And for some reason I thought it was really important to have a baby that looked like my bubbe and like my, my dad. Not like my mother. I was sort of obsessed with them. And so so and then that's when this like I started to hear this music, and I guess this is like where the illness n- narrative turns into a musical.
Mm-hmm. I started to hear like the music that I always associated with
Sort of like Jewish continuity. So I sort of hear klezmer music. I mean, it sort of he- sounds like klezmer music, but it doesn't. It's like that sort of sounds familiar, except it's very metallic, and it's like, it's [00:18:00] very angry, and it's sort of like punk klezmer, and it's heavy metal klezmer, angry, pissed off. Like, what the hell did you just do to my granddaughter? How could you do that to my granddaughter? How could you do that to my family? And I don't even understand.
it's like reproductive technology meets Eastern Europe, meets Brownsville, Brooklyn, meets Merrick, Long Island. And then, this collision of modern technology and, like, the deep personal need that has nothing to do with- Yeah
technology or, or capitalism, except it does now. It's completely tied to it, which is like, I just wanna have a baby. Like, so you're gonna profit off my need to have a baby? And, like, by the time my mom... By the time she was pregnant with me, she'd had one miscarriage, and she'd lost her mother.
Her mother died. My grandmother died three hours after my brother was born and my mother had nursed her the whole [00:19:00] year with, also cancer. And and, but my grandmother, who probably should have died a lot sooner, refused to die until my mother gave birth. And so the, the the beautiful thing about that story is just that they, the family doctor who was taking care of my grandmother, he wasn't a cancer doctor, but he was bringing the, the drugs to her and giving her the morphine at home.
And I guess he was, like, he was... Anyway, he was overseeing her even though he was a family doctor. So he went to my mother to deliver my brother, and then he grabbed my dad's arm, and he said, "Come on, Teddy." And they ran to my grandma's house. Everyone's, like, living around Brownsville, Brooklyn.
And she's in bed, obviously. And he'd given her morphine in the morning and, but not enough. Like, just, you know, just enough to keep her comfortable. And they come back, and my dad comes in, and he says, "Mom, Florence had a beautiful baby boy, [00:20:00] and he's healthy, and Florence is healthy, and she loves you, and I love you, and I wanna thank you for s- sticking this out so Florence didn't have to.
She know that it would've been impossible for her. I- she would've wanna be n- she wants to be next to you, but she had to have the baby." And my grand- mother was like, "This is the way it's supposed to be." And then she said, "Tell her I love her," and they gave her her last bit of morphine, and she went into a coma three hours later.
and so my mother's year of having my brother, like the year that she was taking care of my brother I think was a horrible year for her. I mean, she was depressed, and she didn't get to grieve for her mother, and she didn't get to go to the funeral, and she didn't get to sit shiva because she was a Kippoturn and they kept her in the hospital for the whole week.
And the whole week she was being visited by cousins of her mother who were saying, "Florence, what are you naming the baby? You're gonna name the [00:21:00] baby after Mom, right? 'Cause it's a miracle, right? Isn't it incredible?" And my
mother was defiant. She's like,
No. He was born when she was living, and I'm not naming him after her.
I'm not gonna do it. I refuse." Yeah. And they were like, "Please, Florence, you have to. we've never seen anything like this. She waited. It's just like the spirits are aligned. They went like this." So anyway, they spoke to some rabbi, and he was like, "Give him a middle name that has her initial.
He could be Israel. Don't use it. Just make them happy." "Don't use it." So my mother really wanted to have another baby. She wanted to have a girl, and she wanted to name the girl after her mother, and she was determined to do this. And then she had the miscarriage. And so then when it was with me, they were like, "You have an incompetent cervix, Mrs.
Helfand, but if you take DES it'll be less incompetent. It'll become competent." Which is not really true, because I think my mother's cervix was fine. I think You know, this drug was incompetent. And, uh, the [00:22:00] detail men, you know, were really into getting golf clubs and going on trips, and they sold a lot of DES.
But so then I have this week where I have to, like, go home, and then I call the people that are making the movie, and I'm like, "You're not gonna believe this, but I have the cancer that you're making the movie about. And I just read your proposal for the first time, actually. It's pretty horrific.
And it seems like you're making a movie about people that this already happened to, but since it is happening to me, I don't know. maybe you should come with me to my second opinion. Maybe, I don't know. I don't know that. I shouldn't be in your movie. But anyway, do you wanna come with me to my second opinion?
And I want my mother to have as much life before my cancer as humanly possible. So I, don't talk to her for, like, a week 'cause I can't, 'cause I know the moment I hear her voice I'm not gonna be able to talk. So I just sort of don't talk to her for a week, which is- Hard for me, I guess, or rare for me Mm-hmm.
And then I get my [00:23:00] brother to agree that we're just gonna go home and I'm gonna tell her. And so in that week, you know, like the crew comes and they film me at home. And then you know, anyway, I have to do a lot of stuff to get my life in complete order so that I could take my parents to the third opinion, which is really the second opinion except they're gonna meet the surgeon.
Um, and, and and so I go home and I have to tell her the very worst thing that, it's the worst thing that I could possibly tell her. And then I'm also gonna tell her that we're gonna make a movie about it, and a film crew's gonna come. And luckily at the last minute I realize, my therapist helps me realize that what I'm about to do and tell my mother that if I have a film crew there, it is the cruelest thing that I could do.
And that she said, "You know what? She's gonna be upset next week, too. You don't need this. Please tell me-" "... just call them off. Call the dogs off." So luckily I do. And, you know, it's pretty harrowing experience. [00:24:00] It would've been a great thing to shoot, but harrowing. And, you know, and then we all go into action I was gonna ask particularly around this what it's like.
You know, so much of your filmmaking is really intimate moments where there's clearly somebody standing behind the camera because you're on camera. It's not like you're- Well- ... holding the camera. No, no, no. I mean, the most intimi- well. Mm-hmm. The truth is it depends. For Healthy Baby Girl, what happened was I did go home, you know.
I mean, I did go home. It was just me and my brother. My brother didn't shoot me, you know. Nobody had little iPhone cameras.
I did have a camcorder
That was literally regular eight and kinda broken, and you had to like plug it in. And, many weeks later I was schlepping the camcorder around, my catheter in one hand in a Museum of Modern Art bag.
My mother thought that was very funny. And then the camera in the other hand, and I was like walking around the house like that shooting every single thing that I could shoot because I was obsessed with not letting- This thing [00:25:00] that I saw happening right in front of me, like... how does somebody learn how to, like, make a film about an illness?
What you do is you have an illness. You encourage someone else to make the movie about you, 'cause you're willing to do it because, you know, you've just spent the last year making a film about the treatment and mistreatment of people with schizophrenia, and you have been in very, very intimate moments with all sorts of families and all sorts of people, and you know what it takes for somebody to be that generous, and you know that it's important, and you know that it is much better to have someone going through something than having them tell you about it in the past tense.
And so I feel like, some people die and they give their bodies to science. Okay, I'm gonna live, but I could give this experience to these filmmakers, and we could do this together because, at least it'll make me feel productive, and that was, like, the beginning of my irony of for someone who's very unproductive,
you're being very productive, right?
[00:26:00] but also it just kept my mind off things.
My mother still thinks that this drug was the reason why she was able to have me, and my mom is doing this calculus in her head. Mm-hmm. Okay, she can't have children, but she is gonna live, and at least she's gonna live. But you know what? I wouldn't have her. I wouldn't have her if I didn't take the drug.
So at least I have her. So now I have a her who can't have children, but that's okay. You know, we'll deal with that. I just wanna have my daughter. I don't want my daughter to die, and now I just want my daughter to live and come home so I can take care of her till she recuperates for the next six weeks," which I really don't wanna do.
I'm like, "How the hell am I gonna recuperate from this in your house? Are you crazy? I can't recuperate in my mother's house." So I get all these people that say they're gonna take care of me, but the nurse from the DES screening center that I grew up going to. She calls her and says, "Would you come to our house?
And [00:27:00] could we, could you counsel us?" Because Judy just got the cancer that you have been looking for with a biopsy, since she's 14. Mm-hmm. Well, somebody found it. It wasn't you. Can you just come over? So she comes over, and she basically negotiates, like, a settlement between me and my mother, which is that I will come home, and my mother is allowed to take care of me, and my mother has to take care of me.
And the way that she describes it is, I have to be the one to know that you're okay. I have to know that you're breathing. I have to know that you're okay. I'm not gonna know that you're okay if you're not in my house, and I'm gonna be wondering all the time, 'Is she okay?
Like, how can I possibly heal in the room that my parents brought me home to as an infant straight from the hospital? And my teenage bed is where my crib was. So, like, everywhere where I had, like, fantasies- Mm-hmm ... about growing up and having families and playing dolls and doing all that stuff, and, like, where gender took place
it's a very interesting thing because [00:28:00] everything happened in that house. And so it made sense on some level that I had to grieve in that house. I had to figure out what it meant to, that what I even thought it meant to have children, and what I thought it meant to have a Jewish family, and what I thought I meant continuity meant, and then what does discontinuity mean?
and then the grief, my grief. And it was like, "Oh, right. Okay. We know how to grieve. We sit shiva." You know, I was, like, constantly making paintings of little tombstones and hacked off tree trunks, 'cause I knew that hacked off tree trunks are like- ... a symbol that is used in Ashkenazi cemetery and my mother would, look at my drawings and say, "You're not dead. Why do you have- ... a hacked off tree stump?" Mm-hmm. And I'd be like, "'Cause the baby I didn't have is dead." She's like Judy, you had eggs. You had eggs." Right. your uterus is not around, but I was like, "Mom, I have to grieve- for the unborn children. It's just not gonna work for me if I don't, and I have to." And that was, like, the beginning of me getting kind of [00:29:00] obsessed with grief rituals and- Mm-hmm ... understanding that actually it is possible to heal without having a real shiva if you are healing from a death that nobody else really understands, and the loss of life, that's very abstract Because I said Kaddish.
And I did these other things. Wow. And I did some of the rituals that I created, and that's when I was, like, tapped into, like, thank goodness I'm kind of a Reconstructionist Jew, 'cause I could use Havdalah and a mikvah. Like, I could do- ... all sorts of great things with, like, these tools, even if it's just a little bit of water in a bowl and some friends standing around with me, and, you know, I'll make a terrarium and that'll be like the burial except we're gonna plant things instead of...
so I did all this stuff on the one-year anniversary of my surgery just to give myself the room- ... to be able to feel like both really, really, really be sad and grieve, and also to, [00:30:00] mark, okay, this is, like, the beginning of life now after a whole year of grief.
you mentioned being a Reconstructionist Jew, but I mean, if you think about every traditional ritual that we do at some point was new, right? The whole idea of saying a Yizkor service was a communal response to, "Oh my God, the crusaders have killed so many people in this town.
What are we gonna do?" To gather and remember those people three or four times a year.
Yeah. If I don't have a camera here, I'm gonna get swallowed by your guilt. You're gonna get swallowed by my grief. we're gonna go to a very dark place, and our relationship will not come out okay. You should be grateful to this camera. As much as you hate it, this camera is the public, and the public needs to be here because the public doesn't see this.
Nobody knows what happens inside houses like ours. And millions of people are having this experience. So that was where I learned all of the great lessons [00:31:00] for my filmmaking, which I didn't learn exactly when I was only making films about other people. And I also learned that, it's a real power thing to be able to follow other people with a camera.
You know, not everybody gets to do that, right? Like, who gets to be that storyteller? Who gets to follow their dreams and become a filmmaker? It is at great risk, I could tell you right now. At the moment it's a pretty risky business for someone my age, with a kid my age. But to follow and pursue your dreams and to do not just what you love, but, like, is really useful and important.
And in my case, my usefulness and the importance of what I was doing You know, it's like instead of one, two, three, it's like one, five, seven Exponentially, yeah. Exponentially, right. Like, my understanding of the power of storytelling and my understanding of what happens when you take the same risks that you're asking all of these subjects to do, you [00:32:00] know?
I'm not asking you to do anything that I haven't asked my own mother to do. My mom does not wanna do this either. that's a great sales if you're talking about pitching films, that's a fabulous one. Like, "I'm only gonna ask you to do what I asked my mother to do."
Yeah, and I'm doing it too, yeah. And I wanna take that opportunity to kind of pivot. you said something just in the last couple of minutes that made me think of, this, this very delicate balance that you strike between this is bigger than us, but not so much bigger than us that we lose us.
And you've managed to tell stories that I've watched. The film that you brought to my class, Love and Stuff, which talks about hospice and, the end of life journey of somebody who's dying of cancer with your mom's terminal illness. You talk about body image.
You talk about adoption and where all of that goes. I mean, it's just this, this beautiful sequence of things that all ties together. And then the film that made me reach out to you to say, "Hey, come talk to me on the podcast," [00:33:00] which is the new one that you're working on now when you mentioned your bubbe
You very gently alluded to this unresolved grief
I don't wanna steal your thunder telling the story, but-
I will lead by saying this is a big story, maybe one of the biggest stories of our time, that you tell in historical context. And it is about everybody, and it's also just about you and your family. So set the scene for us of this new film and what you're talking about.
It's because, like, you have to tell the story, and then you have to retell it because it will be useful again and again. Because chances are it is a primordial paradigm that is not gonna go away, and that is not any different than, like, a mother and a daughter relationship, like a family. It's so small.
You could put your heart around that. You can't put your heart around persistent organic pollutants. And it's really hard to put your heart around millions of people dying in a [00:34:00] pandemic that you don't understand. Yeah. So the thing to me that's so interesting about the new movie I'm making is that, You know, I'm still trying to find the language for it. when you watch the next cut of the movie, you can tell me if I'm doing it. It's like how is it that my grandparents lived through one of the most defining historical, medical, public health crisis, disaster, global pandemic moments in history in 1918, and that their daughter was one of millions of people who died?
More people died in that pandemic than they did in World War I, and everyone's obsessed with World War I. And, like, no one's paying attention to that pandemic. But forget everyone else. What about our family? Just like forget everyone else. What about our family? How is it that extraordinary moment...
how is it that my grandparents, [00:35:00] like the most horrific thing that ever happened to them and the rest of the world at the same time, get reduced to Bubbie's meshugas.
and cranky. So, like, my brother's generation, I guess they called Bubbie was cranky. That's how
my brothers referred to my grandmother.
that was before she got cranky. It's before she got cranky? Do you know what you mean by cranky? Cranky is when her daughter died in the flu epidemic of 1918.
That's crank-worthy, some things are worth crying about. but it was like that f- and so then the longer that we lived, the longer that she lived, the more people who knew her daughter, who she basically had banished from remembering her.
Mm-hmm. I mean, they must have. Like, how do you lose the memory of a 12-year-old girl that is the niece of, like, 20 people, and that she has lots of cousins? Like- ... where does that girl go? Right? how do you banish her and vanish her? it's just [00:36:00] so horrible that you just, you can't get close to it.
So do you not, can you not get close to it because you never got to sit shiva, or could you not get close to it because- It didn't even matter, shiva or no shiva. I mean, you didn't even get a Zoom shiva, but because you didn't go to the funeral or because by the time you came out of your pandemic, everyone had moved on,
And you didn't know how to talk about this thing that happened a couple of months ago. Or you were so devastated and everybody was so happy that, like, the world was coming back to itself that you just didn't wanna burden them or, like- Mm-hmm ... what happened? But how did our very own family all comply with your crazy needs to never talk about this girl again and to hide her until she never existed?
And then, you know, at a certain point, all the people maybe, you know, your sisters die, your [00:37:00] husband's dead, your brother-in-laws are dead. You know, your nieces and nephews, it's been years, so they've been brought up to not talk to you about this thing. They might not even remember the thing that made- aunt Sarah, Tanta Sarah so forbissen. they just don't know. No one even knows anymore why Tanta Sarah doesn't make... She doesn't make shiva calls. She doesn't visit people in the hospital. Sh- does she know that Teddy has ulcerative colitis, her youngest son, and has been in the hospital for 121 days and is dying?
Does she know? Did anyone tell her? No. She thinks he's on a business trip. My whole family was colluding on how- Yeah ... to keep Bubbe from ever getting sad. But the more I think about this movie and the more I get deeper into it, I realize, okay, so Bubby was in isolation and Bubby's daughter dies.
and Bubby was, had to have been in quarantine, and then [00:38:00] they have to bury this child. They have to bury this child fast. So how can my grandpa leave quarantine to go bury his daughter? Can he go? Are other people gonna go? If he goes, then they're not gonna go. Can he go? Can he leave?
He can't leave his wife. He cannot leave his wife, who just lost her daughter, who died in their house while they were watching. And I don't know, everything I read about this flu is, like, you die a very violent death, and blood's coming out you know, it's not a beautiful death like Little Women.
it's not a beautiful TB death, you know, you turn a little blue. Like, I think it's really bad. And it's your daughter, and you've two little boys that are like, "What's wrong with our sister?" Like, how do you manage that? And now the whole... New York City on October 7th when she died in 1918,
Like, they hadn't even put in place the protocols that they were gonna put in place, which was they divided the city up into 130 quadrants, [00:39:00] and each quadrant was led by a public health nurse, not even a doctor, who was, like, going door to door, and she understands what's going on. And
If you're sick, they try to get you to a hospital, but if they can't, then you're gonna be in the house, and then they're gonna isolate you, and you're gonna be in quarantine. And if they die in your house, you're gonna be in quarantine. I don't know any of this. Like, I only know growing up, and barely, I mean, I've heard about this maybe three times in my life.
it's the length of the death sentence, and the death sentence is literally, " Oh, I had a sister. Her name was Ethel. She died in the flu pandemic of 1918." at home in the apartment. And from what I know, she died very suddenly, like, in less than 24 hours. And, my mother's never been to a funeral ever again.
Or never went to ever pay another shiva call, and doesn't go into hospitals, and doesn't walk into cemeteries you've been talking about [00:40:00] how she was almost erased from your family lore. I'm thinking back now to the opening scene of the cut of the movie that you sent me. Yeah. And you're standing out in front of an apartment building which you think is the one next door to the building your grandparents had lived in when Ethel was alive, and the building where she had died.
And you show yourself going in to talk to the doorman in f- in 430, and you're like- Yeah ... where's 428? And he says, "There isn't one." And somehow you figure out that the building next door is actually... it's not numbered. You like... it's almost like it's not even there. Yeah. It's like the Sirius Black house in the Harry Potter books.
Like, , you know they all live there
only if you know it's there, then, like, the other houses kind of move apart and it appears in front of you.
But you know, they lived there for two years, and then in 2020... No, 1920 they moved two blocks north, four blocks north. they moved to what is now the equivalent of the Museum of the City of New York. So then you go there, and it's not there either. Like, you know, you're [00:41:00] walking around and you're, like, trying to- Oh
find this thing that's, like, not exactly there, but the census says that's where they moved to. And my, my hunch is like, I bet Bubby could not tolerate living in that house anymore. I mean- Mm-hmm ... I bet she just couldn't do it, and maybe my grandfather was like, "Okay, I promise you I'm gonna find another apartment and we won't be here anymore.
We won't be here." it's amazing to me... what I've been learning is that it's not just that my family, like my grandmother must have said, "I can't talk about it.
Don't bring her. I can't look at a picture. Don't hang the picture up." I don't know. Did she say, "If you're gonna light, I want you to light a Yahrzeit candle, but don't do it near me. If you do go to play- pay chevra kadisha, say hello for me, but I can't go." You know, like maybe my grandfather like did that for my grandmother.
I don't know. But I just know that, my grandmother hid this photograph in yards of [00:42:00] brocade that was wrapped and wrapped and wrapped and wrapped and wrapped and wrapped, and then it was like stuffed in this little drawer. And then I found it and I unwrapped it and I was like, "Oh, my God. Dad, who is this?
She looks like you. She looks like me. She looks like Bubby. Who is this little girl?" You know, and then I find out that's, "You had a sister? But Dad, No, there's only three boys in your family." "No, we had a sister." And you know, you realize as you get older like, God, if she had lived, my father would've been a different person.
Like, there's no... My grandmother would've been a different person. I would be a different person. I might not even exist if she had lived, because maybe my father would've made different choices, that maybe his sister would've been like, "Over my dead body, you're not gonna quit- going to that college.
You got a good GI Bill. No, you're gonna stay there. No, no, no, no, no, no, no. You're gonna be an architect. No. Mom, Dad, like, I think when the firstborn child who is the the immigrant's firstborn American who learns Yiddish and [00:43:00] English, who learns Yiddish before English, but is the first one to really learn English, and who goes to school, and she's like the captain and the navigator.
She's the translator. She's the firstborn American. She's the Americana. They're still greenhorns. She holds a very special place in that family, and when you lose that girl, 12 is not... She's, you know, she's about to become a young woman. You lose that 12-year-old, I think you lose a lot. And then if you're born into that family and you don't know that there's a loss, there's this shadow.
so my father is born into this family. He's the baby that no one expects to happen, I guess. Seven years later, seven is a kind of interesting number, right? She grieves- Yeah. That's right ... for seven years, right? And then, right... So it was 18, 19, 20, 21, 20... Wait. 19, 18, 19, 20, 21, 22, 23, 24, 25.
Seven years. So my dad's born in 1925, seven [00:44:00] years later, and it's a boy, and he has old brothers. They're really older than him, much older. And I used to, "God, wow. Why did they... They had you so late, Dad." "I don't know. They just did." he doesn't find out that there's an Ethel till he's, like, a teenager.
Mm-hmm. what does that mean, Doctor, if you grow up in a house where your your mother... But my mother even used to tell me, "Your grandmother was so terrified that something was gonna happen to your father." if he was out playing stickball, she would invite him, she would make him come in, and then she would take the new Spalding ball that he was playing with and she would chop it in half with a big cleaver 'cause she didn't want him to get hit by a car.
She's like, "Yeah, so your father had his balls cut off by his mother with a meat cleaver starting at like six years old. So you tell me how healthy that is, Judy." I was like, "I don't think you sound so good, Mom." And my dad would be like, "She loved me." And my mother would be [00:45:00] like, "Teddy, she smothered you. She didn't love you.
I mean, that's not love love. That's just not love." Yeah. Like, that's why your father's so crazy. But it's like what does that do to a family? ... That's why I wanna ask that trauma therapist whose shingle is outside what I think used to be 428. Right. Dr. Daphna Schiffrin.
It's like, hello, I can't believe you have a shingle where the door should say 428, but instead it says psychiatrist whose specialty is children, families, and trauma. I mean, I spend an inordinately large amount of time with families who have gone through trauma, mostly as refugees, and certainly one of those recurring traumas is losing a child somewhere along the line.
there's certainly horrific stories if you read, The Spirit Catches You and You Fall Down about some of the things that happened as those people were leaving Laos and making their way to the [00:46:00] West, which I won't go into the details 'cause ... it's hard for me to think through them.
But my own patients who have lost a child I remember visiting one of them in the nursery after she had had another child probably five years after the loss, and this was something that happened in the US. They were in- Yeah ... the city that they'd arrived in first after coming over, and had either a stillbirth or a very late miscarriage, or an infant death.
I can't remember exactly what the circumstances were. But I walked in not recognizing the name on my list, and I find myself face to face with this woman who I've seen several years earlier in very fresh grief over this loss, 'cause they moved to Pittsburgh shortly thereafter, and I said, "Congratulations, and are you okay?"
Just what is she processing? And- To my amazement what she said is, "I'm sad over here, and I'm here and I'm happy." That she had already figured out how to make a little home for the sadness that wasn't gonna take away from what she was feeling that day. [00:47:00] But I know from other people that I take care of that not everybody is that lucky, and it sounds like your bubbe couldn't make that separation during her lifetime.
I mean, she loved my father, but I think she was terrified that something was gonna happen to him. Yeah. And she was terrified that something was gonna happen to all of us. I remember hearing my mother, who now I understand it, and she's like, "God forbid you get a sniffle .
Don't sniffle in front of your bubbe." Why? And, that was before I really understood anything. Why? Sniffles scare her. Yeah. "Everything scares her, Mom." "Everything scares her, it's true, but sniffles really scare her." The flu scares her. but it's so interesting to me that, you know, I want to get into this in the movie, but I don't think in the short film that we're making right now that we can, but I'm gonna be doing this thing called live cinema, which is this new form, it's sort of like, it's like we're storytelling, like live storytelling on a stage and like multimedia, looking at the movie like on a screen, and maybe like using an old overhead projector and using, you know, interesting [00:48:00] materials that you could do it that way, and having like live music where, you know, you show clips from the movie, but then I get to tell stories also, and then I get to do original research- Like, that's related to the audience or the place where I'm gonna be as it relates to that flu.
And what I'm finding is, I mean, just in the last couple of weeks I have met two women my age or a little younger whose great-grandmother died in the flu epidemic of 1918, leaving their mother behind as a little kid. and then the mother grows up and then has a kid, and then that's their grandma, right?
so they're telling me, you know, "My mother grew up with a mother who was actually very depressed, and she was very depressed because she lost her mother in the flu epidemic of 1918. And I've never really understood it. And then when I learned about what you were doing, like things kind of clicked for me, and I realized no wonder my mother was probably the [00:49:00] way my mother was.
And no wonder I'm kind of like that. And I think it's because, like, my mother she didn't get to really grieve for her mother, and then she had to grow up and be, like, a little girl without a mother, and then she's like, "And this is the photograph of her and her mother before her mother died.
And I only have this one photograph, but it kind of says everything, right? And my mother, like, kept this, and it was precious, and then I got it." Uh, so I think I'm gonna find many people- At this point, we still have people who are alive who are connected to people who are connected to that pandemic who did not get to grieve the way they needed to grieve, and who took that grief and it morphed into something else.
And, that pandemic was not, apparently was not very well studied. Like, it was a combination of, like, ego and, like, the president and mayors of cities. They just really wanted to look strong. They wanted to look capable. They wanted to bring [00:50:00] their boys home from the army.
They did not wanna focus on people who were dying of the flu. They did not spend an inordinate amount of attention to understand what happened to these people, so they really weren't studied. And so lots of people kind of, like, fell through the cracks, and the people that fell through the cracks were the grievers.
and the grievers were either- ... parents who lost very young kids, because apparently... Or kids who lost pretty young parents, because this was not like our COVID that really affected a lot of old people. It really affected young people and very young people, like people in their 20s and 30s, and then very young people.
and the boys that were, like, in the army were the ones that passed it around. so they say that, like, there's been some studies where they kind of looked at people who had lost somebody During the flu epidemic of 1918 where they were looking at suicide ideation and, and numbers of suicides or people that were attempting it, and [00:51:00] then they were looking at like, well, what was their background?
And it's like, oh my goodness, all of these people that are having all of these mental health problems that are turning themselves into asylums were connected. They had a terrible trauma during that, right? So there's like, there's people that are finding out this like years later, and then in 2020 that's when everyone started like, "Oh my God, we need to know what happened in 1918.
We really need to look at that." Mm-hmm. So like all these researchers, everybody's looking at 1918. Like, so like my own personal like I'm on a Zoom shiva and I'm looking at the person whose mother just died of her terminal cancer that she's had for two years, but now she just died the last weekend in March, which is like- beginning of COVID. And so now, even though she didn't die of COVID the grief and all of the rituals are all COVID related. Mm-hmm. And the-
and we're living through these COVID restrictions, [00:52:00] and it's the first Zoom shiva I go on, and she's not even in the same house as her brother and sister-in-law who are in Brooklyn, and she's by herself on the Upper East Side, and the rabbi is somewhere else, and all of us in the gallery are all somewhere else, and everyone looks like, "How do you do this?
How are we gonna do this? How are we gonna do this? How do you extend your love through here? Like, do we hug her?" Yeah. And that's when all I could think about is like, "Oh my God, I can't even think about Elizabeth Greenstein. I'm thinking about Sarah Plitnick." Now wonder... Bubby didn't get to sit shiva, so I start off with she didn't get to sit shiva, but then slowly it's like, maybe like nobody really would, like this is not even in the newspapers.
... even the day that her daughter died, there's nothing in the newspapers. It's like it's all about the war, and it's all about the war for weeks. Right. And then finally it's sort of about the flu, but my grandmother's been like she's a basket case now. And she's n- and she's not near any of her people, and all of her people live [00:53:00] in Connecticut, her sisters, and there's no Zoom.
And even the telephone, if they had a telephone- they were telling everybody, "Don't sneeze. Use a handkerchief," right? "Stay inside," right? They, like all these directives. "And don't use the telephone," like the only way that we could use telephones are with telephone operators, and the telephone operators are all women, and they all sit next to each other in these big rooms- Mm-hmm
filled with telephone operators, and they're all getting sick 'cause they're living, they're right next to each other. Mm-hmm. So we are down. And they're talking the whole time, so they're spreading their illness. Yeah, so we're down. We're down. basically like, we are in emergency.
... if you need the hospital, like only if it's an emergency, but do not use your phone 'cause you're not gonna be able to get through 'cause, you know, we need it," right? So even if they had a phone, they weren't supposed to use the phone, right? So you know, 'cause I was like, wait, maybe they, th- like more pe- lots of people had phones in New York City, and maybe they did.
They were middle, you know, they were working class, but maybe they [00:54:00] did. They can't even use it. So anywayI think the thing that was really jarring for me was, like you said, Judith, you always do this fine line between the personal and the universal. Mm-hmm. Well, this has been, like very personal.
It's just about Bubbe and us until recently when I really started to, like look at the literature. And again, like there's no literature for many, many, many years. And then really, you know, around 2020, now there's a ton of literature and comparisons, and part of the literature is about what happens when you don't take care of the people who are grieving.
Yeah. And that they are assuming that there's probably more people who lived on after that pandemic, but who got very sick physically, who had trouble sleeping, who had all sorts of anxiety disorders, who were more [00:55:00] likely to try and kill themselves, who were more likely to get inside of an asylum, who were not very good at work, who were not able to finish an education.
Like, all these near duels. Mm-hmm. And all these people are totally anxious. They're saying, like, "We don't even know the number of people. Like, we know how many people died." Mm-hmm. It's like just in the United States, let's say 640,000 people died just in the United States- Right ... then, right? so for me it just was like, wow.
So my bubbe's mishigas was not my bubbe's mishigas. Mm-hmm. My bubbe's mishigas was actually something that she shared with millions of people. Mm-hmm. And we didn't know that bubbe was trending. We thought that bubbe was just- ... this isolated ... let me sit in the dark so the evil eye shouldn't find me and get me because he will, 'cause he always does, and then he's gonna get you.
So if I sit in the dark, your children won't get hurt. This was kind of like where my grandma was in the [00:56:00] '70s, right? And I keep thinking about, you know, you talked about the increased prevalence of anxiety disorders and suicidality and all of these other things. I also wonder now, there's this certain stoicism that we associate with the so-called greatest generation, right?
the people that fought World War II, that were the parents of the baby boom. But those were also the children of the flu generation, right? Yes. And how many of them grew up in a house where there was this dark secret that nobody talked about, and it was just horrible things have happened. We're not gonna say anything, and when bad things happen to you, you're just gonna shut your mouth and keep going.
And how much of that characteristic stoicism is actually unprocessed pathology? The way that I started working on this, you know, during the pandemic, I would call a cousin and I'd say
How did you experience Bubbe? She was, like, kind of scared of everything and very quiet and, you know." " how did people talk about her? Do you know why she was like that? What do you think? Did your father ever tell you anything?" My father... So now this [00:57:00] is my father, her son.
my father didn't talk about anything. My father didn't talk. My father was- Okay ... the most silent guy. I don't know anything about anything because our, dinner sucked at our house. Just... Mm-hmm. You, and then it's like, and do you know that, me and my brother aren't even that close.
Do you know how I learned that my brother retired and moved to the other side of the country? " I didn't know that your brother moved to the other side of the country." That's because you're not his dental. You don't go to him for a dentist. And if you'd gone to him as a dentist then you would've got the postcard that I got that said- Hmm
"Your dentist is retiring and he's moving to California to be near his children." That dentist is my brother, and his children is my niece. And not only do I need a new dentist, but, like, I don't even have a brother who lives within 10 minutes of me anymore. Like, I didn't know he moved. It's like, don't you think that's like part of like you grow up in a house where [00:58:00] no one talks and then, maybe that happens?
and then I talk to, like, my other cousin, and he's like uh, let's see. My father and mother," that's their second son- ... left me a note." My father, my grand- my mother died. 10 years later, my father dies. He leaves me a note in an envelope that I find in the house, 'cause I have to go through all the stuff.
'Cause I got the house- Hmm ... 'cause I'm an only child, so I got everything. And it says, "Important papers for Marty." And I open it up and I find out that I'm adopted. I'm 50 years old, and this is how I find out that I'm adopted. So I call up your mother, Judy, and I'm like, "Aunt Florence?" She says, "Yes." "Did you know that I was adopted?"
Marty, sweetheart, I did know. I was there when they came home with you, but they made me promise that I would never say anything. And my whole life I've been waiting, I've been praying that they'd talk to you about it, and then you just didn't talk about it. I just didn't know if you knew. And then after your [00:59:00] mother died, I was like, "Simon, are you gonna tell him?"
"Yes, I'm gonna tell him." And then I was so mad at your father because it was like how could they not do that? But Marty, it wasn't my place. I didn't know what to do. I'm so sorry. I'm sorry. I'm sorry. He's like, "It's okay, Aunt Florence. It's okay." But, you know, this answers a lot of questions sort of.
I never really felt like I belonged, right? And so, it's like everybody has a secret. You know, my father kept a secret from me. My father practically died and didn't, and then he comes back to our house. I'm five. So my grandma's still living, And when does this happen? my grandfather dies.
They bury him in the wrong place because they don't have the heart to talk to their mother about the funeral arrangements for their father. And their father dies suddenly, 'cause he has pneumonia. And then he has a tracheotomy, so he doesn't get to tell them what he wants. And then they don't talk to her until they come home after the shiva.
And now they come home [01:00:00] after the shiva, and they want to tell her how beautiful the levaya was before everyone comes home to pay a shiva call to the lady who has never paid a shiva call since 1918. But they love her, and they revered my grandfather. And my grandma only wants to know one thing. " Where did you bury Pop?"
And it's like such a bizarre thing. It's like, why would your grandmother have to ask her own sons where they buried her husband? Well, she didn't go, and they didn't tell her beforehand, and they didn't ask for her opinion, and they didn't even know how to talk to her about it. And, maybe they called up the lanceman shop, and the lanceman shop said we have an old one, and it's in Staten Island.
And then we have the new one, which is kind of near where you guys live." And then my uncle was like, "Oh, we can take the new one. I'm not gonna pay a toll to go visit my father." So that was decided where they were gonna be
buried, but that's not where they
wanted to be buried. So my father now has two horrible things.
He's lost the father [01:01:00] who basically took the place of a mother who I don't think was emotionally available. They loved her to pieces, but I don't think she was emotionally available. So my grandfather was like the beating heart of the whole family, and took care of everybody and everything, and took care of Bubbie and let her be who she was, and never tried to make her do anything, 'cause I think he was terrified of what would happen to her if she got connected to the grief in a different way.
And then my father finds out that my grandmother Not only did he bury his father in the wrong place, but his mother does not want to die anymore after really only wanting to die so she could be with her daughter again, because now she's gonna have to choose between her husband and her daughter.
And it's sort of like the lesson is like this is what happens if we do not take care of each other, we don't push you, we don't say, "You are strong enough you can feel this." the floor is not gonna fall out from under you.
I- if you die because you're feeling this, okay, [01:02:00] but I don't think you're gonna die. it's just gonna be horrible, but then you'll be on the other side of it, right? And then we can all talk about her, and we can put her picture up again, and then she won't die every single time you think about her, but then you can't bring her up.
'Cause I think the reason why my grandmother stayed as isolated as she was is because- ... that's what you get. When you sit shiva, you get carte blanche to be able to sit and think about your loved one in any way you want to, and if you don't wanna talk about them, you even get to do that. Like, you don't have to turn their memory into a blessing out loud.
But you only get to do that for seven days, but you get it, and people witness you doing it. So I think that instead of, like, from strength to strength, I think my grandmother went from quarantine to self-isolation.
And she went from isolation to isolation,
and the isolation got greater and greater.
The more that what she seemed to want, which was let's pretend Ethel never [01:03:00] lived, at a certain point there was nobody who even knew anything about Ethel that could talk about her because she did live. Like, maybe it even just made my grandmother feel good, like, I know that they knew her, and if they see me, they'll think about her even though they're not allowed to talk about her, and even that gives me a little comfort because I know that they know."
But then that was it. And I-
always try as I'm finishing up
these conversations to think about, like, what's the lesson for my own colleagues a lot of people that listen to this are in healthcare and are having these conversations in a clinical setting.
We're afraid that if we hear these kind of emotions and hear this kind of loss, we'll fall through the floor, right? healthcare particularly, we like clinical, we like stable, we like to be in control. And so if we feel something is, like, causing us to maybe lose control and, God forbid, cry in the room with somebody, then we don't wanna touch it.
But that might be the only opportunity, especially somebody who's not gonna have the opportunity to have a shiva or somebody who's going through [01:04:00] what you went through with your diagnosis, what we talked about earlier. If they can't- Yeah ... share those emotions there, then they don't get shared. 'Cause maybe they're in a family where they can't talk about them there, but in this private setting you could if there was somebody who wasn't afraid to listen to them, I love the way you said it, like, the floor isn't gonna fall out from you. Like, you're not gonna die from feeling this. Or maybe you will, but I don't think you're gonna die. let the feeling come. Yeah, you know, it's so interesting that you said that because the way that I use a healthy baby girl is, there's this moment with my doctor. I go for my one-year checkup and- Mm-hmm ... I say to him, "Doctor," I know it sounds crazy, but, "Doctor, when you look inside of me and you see," 'cause he has a speculum, right? Right? So he's like, "Yeah, my legs are like," you know.
I say, "When you look inside of me," and he's looking inside of me right then and there, "and you see that there's no fallopian tubes there, and there's no cervix there, and, there's no uterus in me. I can't have a child. Like, [01:05:00] what do you see? What do you see?"
And he says- Oh, I see normal. I see normal tissue I see no cancer. I say, "Bye bye, you got normal tissue. That's great. Goodbye. Normal. That's great." You see the glass as half empty. I see the glass as half full. And I say, there's nothing normal about that.
There's nothing there. That's not normal." And he's like, "No, there is something there. It's normal, healthy tissue." And I'm like, "But there's nothing there. That is not normal. There's nothing normal about this." And I always stop it at that point and I say to, like, first year medical students, "Well, what do you think?"
what do you think his response should have been? What do you think his response should be?" And some of them are like, "Well, he's right. He's right." Mm-hmm. "He's looking inside of you. He sees there's no more [01:06:00] dysplasia," I don't know. I mean, the guy reconstructed me. I mean, and I'm sure he like, I look inside of you and I think, "Pretty damn good work, man.
Good for you." Mm-hmm. "You really know how to use, that little piece of skin, right? there's another lesson for my colleagues. Don't pat yourself on the back while you're holding a speculum.
like, "What do you want?" And I say, "I want him to be sad. I want him to say, 'When I look inside of you, I am angry and sad. I am really sad. Makes me wanna scream and cry. I'm sorry for you. I'm sorry. I'm glad you're alive. I'm sorry that this happened to you. It makes me angry. It makes me want this to never happen to anyone else.
I'm glad I saved your life. I'm glad you came to me when you did, but I'm angry for you, with you. And so, no, there's nothing normal about that. You're right. I'm really sad.'" I was like, I just wanted him to be sad. That's all I wanted. And they're just like, "But we can't be sad." I'm like, yes, you can be [01:07:00] sad.
If you want me to be healthy- Mm-hmm ... then you need to be sad with me. Don't use fucking words like normal. I mean, literally what he says is, "Did you ever look at the inside of a glove? Did you ever look at the inside of a glove? What do you see?" It's like you don't see anything.
There's, like, nothing there. And so, you know, and I was like, I come back to him the next year and I go, "Do you know that this whole year, whenever I had sex, I thought about the inside of a glove and then I was just like, 'Forget it'"? I was like, "Do you know that when you talk to us, that's what happens to us?
Because we take you so seriously, and whatever you say, we take with us for the rest of the year 'til we come back and see you again in six months." Yeah. "And if you use words like normal, like the inside of the glove,
But what if he had brought my dad here? And here's the lesson, like, if he brought my dad here, and he cried with my dad, and then he told stories about Ethel with my dad. First of all, my dad would want to go because my dad loved boats, and that meant my dad would have gone on the [01:08:00] ferry.
And to have a day on the water with your father on a ferry- ... and get to be in the harbor with your dad, and then get on a trip. You're gonna go to a cemetery, and then you're gonna walk through all these crazy wild things. And You're gonna go and then He only takes you.
You are the one he takes 'cause you're the only one home. Your brothers are old already. Like, and he takes you on this little adventure. And then he says, "Tatala, when it's my time, I'm gonna be right here next to your sister, and you're gonna help me do that, right?" Then nobody... at least you would have remembered where to bury him because you had this great day with him.
And then you would have known your sister. So even if no one could really talk about her, the memory would be she must have been pretty great." 'Cause those days when I did kav ha'rav with my dad, and we went on the boat, and we left Brownsville, and we took a lunch, and we did this whole long thing, and it took all day to go and come back.
Those were the best days of my life, and we visited my sister's grave. Like, and I guarantee [01:09:00] you, like, that would have been my father's best day of the life. And so that's, like, my fantasy when I take my daughter there in the movie. But on the way there, I say, "But why didn't anyone push Bubbe to go? Where was my family?"
Like, how smart do you have to be? Like, if you- Yeah ... know that you need to say Kaddish every year, and Is she saying Kaddish? Are you making sure she's doing that? Like, how can everybody protect somebody so much? So I think that we are so scared of each other's emotions and then you reduce them to, "Oh, that's a bubbe meise.
It's from the old country. Bubbe's afraid of this. Bubbe's afraid of that." It's like Bubbe wasn't afraid of anything. Bubbe didn't get to sit shiva. The whole country moved And then Bubbe wanted to remember her child and did not know how to talk about 1918 in 1925. And then in 1929, there was a depression, and then people were jumping out windows.
So then she wasn't gonna talk about them. [01:10:00] And then there was the Holocaust. And can you imagine, like, you're upset about your daughter who died in your living room, and you know where her grave is? My daughter died in an oven in Auschwitz. Mm. That's a survivor. I have a reason to feel bad, Mrs. Helfand, but you, Sarah?
I don't know about that. So I think that then my grandmother was like, "I'm gonna complain? We are being flooded by survivors who have real grief. My grief is my craziness." And so it became Bubbe's meshugas. And so my job now is, while I can, 'cause if I don't nobody will. So the only way to turn, and maybe we could end on this, like, the only way to turn Ethel's memory into a blessing is to create this sort of movement around this idea that it's never too late to turn a bad morning good, and that in terms of the people for COVID, that's like it's only been six years.
Like, I'm talking about someone who died 104 years [01:11:00] ago. Like, six years, like, we all still remember that person. But I think people... I know. I mean, I was with someone two nights ago. She's like, my father died, like, literally the first week of COVID. We had to bring our own shovel to the cemetery.
They wouldn't even let us touch their shovels for me to dig ourselves the grave for my dad." Yeah. And then she said, all the neighbors," they live in, like, a bungalow colony, and she said, all the neighbors came, and you know what they did? They put little lights. They lit candles, and they just put them around our house, and then they just stood there.
And they stood over there, and we stood here. And that's what they did." And I was like, "How was that?" She goes, "It was pretty good. And then we have the Zoom shiva, and my mother cannot understand how it works, so she's talking about all the relatives while they're listening to her." "So that wasn't very good."
I'm like, I'm having like Mom, no. You cannot talk about what she looks like. Mom, you're supposed to be grieving." It's a shiva. Yeah. and then she said, "And then we said, 'You know what? A year from now we'll have a memorial.' And you know what happened? Then a year [01:12:00] comes by, and it was like, it's not the right time.
And then you know what? Then there's no right time. And, you know, we still haven't had it, and we're not gonna have it. We're never gonna have it." I said, "You still could have it." She's like, "How am I gonna talk to people now? Do you know what's going on now? We've had October 7th. We have Gaza. We have wildfires.
We have floods." Mm-hmm. "We have earthquakes," right? So we have, you know, Ukraine. all- ... millions of people have... Their people are now buried under rubble, and I know where my dad is. I'm gonna ask people now to have a thing for my father, who's 80? And I was like, "Do you need it?" "I might need it, but I can't ask for it."
So that's where I think people are, and I hope that, if that's what Ethel can do, if that's the best I get of Ethel, you know, that's pretty good. And if I'm lucky, I'm gonna, like, do a little digging and I'm gonna, like, find a report card somewhere in New York City. Yeah. you had one scene in the film that I think is a good quote to end on.
You call the cemetery and you're talking to the guy on the phone who's like, [01:13:00] "You know, dear, it's been 100 years. I don't think there's much..." you were asking about whether anybody's ever been exhumed and moved to the other cemetery, and so there's nothing left. But you're what's left.
You are what's left. And I think as long as you're here, right, then there's somebody carrying that on. Honestly- I think, There's the candlesticks, right, as you're holding those up. There's so many important bits of what you said one of which is that your grief doesn't have to be as bad as somebody else's to be worth recognizing and processing, right?
It may not seem as catastrophic as what happened to the other person, but it didn't happen to the other person, it happened to you, and this is going back to the personal. You made a film about you because it happened to you, and it happened to your family, and nobody else can grieve that person but you because
nobody else knew them the way you did, or nobody else knows their story the way you do. Yeah. but I think the other thing, though, I mean, in terms of [01:14:00] storytelling and, I just don't think that people know how to hold millions in their heart. I think that's why stories work in general.
Yeah. Because you care about somebody who's in trouble, you care about somebody who has a heart that's at risk of being broken or a relationship that might never get, you know, healed. And, I'm sure as a doctor, I mean, why do you do a case study?
Mm-hmm. You do a case study. It's like, okay, you can wrap your brain around that, and I'm sure, like- ... I mean, if it's a good case study you do ask things about, "Well, tell me about their life. Tell me about their work." what were all the things that led to them , until they got that diagnosis or this thing happened or they died or that, what were all those things that led to them to this point?
'cause then they're not just their tumor, right? They're all these other things. the first time I ever participated in a tahara, in the preparation and the cleaning and dressing of the body before [01:15:00] burial, I was just observing. But I came home thinking about these sort of these massive casualty events and whatever, and thinking about how much water if you need a certain amount of water for one tahara, and like how much water would that have been for all these thousands and millions of people?
And it just blew my mind. You know, Stalin was often quoted as saying, "One death is a tragedy. A million deaths is a statistic." And the only way to reclaim those millions is we don't try to remember the millions. Every person try... A million people have to each remember one person, and then you get it back.
Thank you, Judy, for being on. I will talk to you
again soon. I love that you call me Judy.
Do you know that only people who know me- ... before I'm 18 or my relatives call me Judy, but I really like you, so you can call me Judy. That's so sweet. Thank you. It's really sweet. I came back from college, first time I come back from college, and I'm like, "I'm going by Judith, okay?" And my mother's like, "You're kidding me.
Why?" I'm like, "Can you see Judy up on the [01:16:00] screen? Directed by Judy Helfand? I don't think so." She said, "I think so." I was like, "No, no, no, no, no." But, you know, she goes, "But I only call you Judith when I'm mad at you." And I was like stop." Anyway. I'm not angry. Thank you. And I'm very grateful. I know you're not.
Okay. Thanks so much. Thank you so much. I'm very grateful. Thank you. Good night.
[00:00:00] Well, I might never use the word cranky again, at least not lightly, and it'll be a long time before I dismiss someone's behavior as just being their meshugas again. Judith paints a powerful picture for us of how America's desire to move on from the flu pandemic and celebrate its war heroes instead left her Bubbe Sarah with no way to process a loss that is the worst thing most of us can imagine, the loss of her child.
The biblical patriarch Jacob believed his son Joseph to be dead for twenty-two years and was so devastated by this that even when Joseph turned up alive and well and living in Egypt, Jacob never fully recovered
Bubbe Sarah never got that reprieve with Ethel, but her family only saw the symptoms of the grief, the crankiness, the meshugahs of never attending funerals or shiva or visiting people in the hospital. One of my previous guests, Warren Kinghorn, writes about this problem in his recent book, "Wayfaring." Our understanding of people's mental health, both in professional psychiatry and in our day-to-day armchair diagnosis of one another's neuroses, is stuck in a [00:01:00] mind-as-machine model of humanity.
We're behaving in an odd way? Must be something wrong with the machine, and if the patient is willing, we can fix it. But focusing on the symptoms causes us to lose sight of the story. And like all of Judith's stories, this story is bigger than just Bubbe Sarah. The stories she tells are stories not of people who are broken, but of a world that is broken, and the way those breaks hurt the people who get caught in them.
My colleagues and I are trained to fix the broken people, not so well trained to listen to the stories about the broken world that's the reason they broke in the first place. when we encounter those stories, we tend to freeze or say the wrong thing or gaslight people into wondering whether the thing that they know happened to them really happened.
It happens with environmental factors, but it also happens with domestic abuse, workplace harassment, and encounters with structural racism. As Judith said toward the end of our interview, the right response in that moment isn't a drug, and it isn't to reassure the patient that [00:02:00] everything is fine.
It's to learn to be sad or angry or disappointed right alongside the patient. It's to validate that something happened to you that you didn't deserve. We can't promise accountability. We can't even always point to a single villain. But we can share in the sadness of not getting to have a child or not getting to mourn one who was taken away too soon.
That's part of the job of healing, too. It's the reason I keep doing this podcast. It was an honor to have Judith join me this week to teach that lesson, and you can join me in thanking her for her wisdom. "Good Mourning Ethel" is still a work in progress, and films don't get made for free. You can see a clip of the project at https://www.documentaries.org/films/good-mourning-ethel/,
and there's a link there to contribute to the project. It's also in the show notes, so if you can't catch [00:03:00] all of that while listening, just click on the show notes in your favorite podcast app and follow the link. Six and a half years since the COVID pandemic reached the U.S., there is as much unresolved, disenfranchised grief as there was in 1918.
I think Judith, and you and I with her, can help heal some of it.