Dr. Denise Millstine hosts author Julia Phillips and pulmonologist Dr. Ana Zamora explores the emotional and clinical realities of interstitial lung disease through the lens of Phillips’ novel BEAR. As we discuss the story of two sisters caring for their ailing mother, listeners can gain insight into the complexities of chronic illness, caregiving and the socioeconomic pressures that shape health outcomes.
Dr. Denise Millstine hosts author Julia Phillips and pulmonologist Dr. Ana Zamora explores the emotional and clinical realities of interstitial lung disease through the lens of Phillips’ novel BEAR. As we discuss the story of two sisters caring for their ailing mother, listeners can gain insight into the complexities of chronic illness, caregiving and the socioeconomic pressures that shape health outcomes.
This episode was made possible with the generous support of Ken Stevens.
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Dr. Denise Millstine
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic is chronic lung disease called interstitial lung disease and our book is “Bear” by Julia Phillips. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine.
My guests today are Julia Phillips, who's the author of the bestselling novels “Bear” and “Disappearing Earth,” which was a finalist for the National Book Award and one of the “New York Times Book Review’s” Ten Best Books of the Year. She's a 2024 Guggenheim Fellow and lives with her family in Brooklyn. Julia, welcome to the show.
Julia Phillips
Thank you so much for having me. I'm so honored and delighted to be here.
Dr. Denise Millstine
We connected at the Tucson Festival of Books and I was so excited to read “Bear” afterward, and so excited that on staff at Mayo Clinic, we have an expert on this very topic. Our expert today is Dr. Ana Zamora, who's the Medical Director of the Interstitial Lung Disease Clinic at Mayo Clinic in Arizona and the co-director of the Autoimmune Interstitial Lung Disease Clinic, where she collaborates with rheumatologists to diagnose and manage patients. She treats patients with pulmonary fibrosis, hypersensitivity pneumonitis, and many other lung diseases. Ana, welcome to the show.
Dr. Ana Zamora
Thank you so much for inviting me, Denise. What a wonderful opportunity. I'm so honored to be here.
Dr. Denise Millstine
Thank you. “Bear” is a fairy tale inspired modern novel of two sisters, Sam and Elena, who care for their mother in a remote home off the coast of Washington state. Sam works on the ferry system, and one day she and other passengers spot a bear swimming toward their island, who soon becomes more connected to their family. Sam and Elena are working jobs in the service industry while they care for their mother, who will be the focus of our episode today.
So you both know how “Read. Talk. Grow.” works; we discuss books that portray health topics in an effort to better understand health experiences through story and in this case, we'll talk about chronic lung disease.
Julia, it was such a pleasure to have met you earlier this year, and I'd heard about your book even from one of our librarians who said she was reading the book and was like, oh, we have lung disease. Let me tell you how it pans out. Our archivist, Carol, who's responsible for one of our websites. So thank you, Carol.
Hearing you speak about “Bear” inspired me to move it to the top of my to be read list, which is quite long, especially since it's inspired by this Grimm's fairy tale, which we know can be a dark set of stories. So I was a little intimidated to read it and listeners should know, it does get a little dark. But the mother, the main character, is really a side component of this. Will you talk about your inspiration for the mother character?
Julia Phillips
Yeah, absolutely. And I want to say also thank you to Carol. And I was so thrilled to be able to come to Tucson for my very first time actually, and be able to meet in person. It was incredible.
As you mentioned, the book is based off a Grimm’s Brothers fairy tale. In that original fairy tale, which is called “Snow White and Rose Red,” two sisters live in this little house with their mother, and this bear comes to their front door and keeps showing up and showing up. And because it's a fairy tale, the bear, you know, is enchanted. I don't think it's any spoiler to say he's an enchanted prince. One of the sisters ends up marrying him at the end of the story. It's a very strange minor tale. I was really compelled by it and loved it so much as a kid. It's stuck with me my whole life. I tried a few times over the decades to rewrite it, or find a way to make sense of my fascination with this story, and this was kind of my big bite at the apple.
So in this story, we have two sisters, as you said, who live with their mother and this little house and this bear comes to their door. And one of the things that compelled me most and has always compelled me most about fairy tales is there was always this feeling of…in the Grimm's fairy tales, it's this feeling of intense detail and this kind of realer than real feeling, where things were so specific and shockingly specific and quite dark, you know. It doesn't just say at the end the villain gets her just desserts. It'll say the villain was put into a barrel filled with broken glass and rolled down a hill into a river. And you know it would always be so specific and so shocking.
And so I wanted to find a way to channel that specificity and that detail into this version of the story. And so a dynamic that I want to have here is that the girls live with their mom. I say girls, but they're in their late 20s, they're adults. They live with their mom because they're her caretakers and she is terminally ill and has been sick for quite a while and is no longer able to work themselves, and they are financially strapped so they don't have a robust or privately funded support system.
What their support system is, each other and a not small part of the plot is the pressure that puts on their family medically, financially, interpersonally, how it has shaped them over the years, engaging in this caretaking for each other and kind of transitioning roles from being the child of their parent to being the person who is going to be the parent to the end of her life.
Dr. Denise Millstine
So beautiful. And I know you shared in Tucson, not to keep bringing up the Tucson Book Festival, but listeners who haven't gone absolutely should. But you shared that session, that “Disappearing Earth” obviously was enormously successful and came out to great acclaim, and that your second book was a lot of pressure for you. So how telling that you dug deep into this story that had stuck with you for decades and you were able to bring it into a modern tale and have again, success with it. So congratulations on figuring out how to do that.
Julia Phillips
Thank you. That's really kind. I, I guess I will leave it for every reader to decide, if I did figure out how to do that, but I would say it was a real joy in this project to reconnect to the stories and the kind of storytelling that made me fall in love with reading, made me fall in love with writing. like those foundational stories for me.
Dr. Denise Millstine
Fantastic. So, Ana, I bet you didn't think when you became a specialist in interstitial lung disease that you'd be talking about a fairy tale to help people understand what the experience is like. Tell us your reaction to the book, and also give our listeners an idea of what it's like to see patients with this type of lung disease.
Dr. Ana Zamora
Of course. So I'm going to start saying that Julia, what a beautiful book. I really enjoyed it and reading. A spoiler alert, at the end, I did cry. And while I cry in several parts, to be honest, because I felt connected to my patients, but mostly my patient’s caregivers. Because this is something that I tell about a chronic disease when you have a caregiver. And I found that interstitial, this is group support that now we have, not only for patients, but for caregivers. Because who takes care of the caregiver.
It's something that is unspoken. No one says, but it is, if any of you, of course you love your mom. Of course you love your father, and your spouse. But it is a huge burden to the family, not only financially, but it takes a toll in your emotions. And life does not stop for you. You need to go to work every single day and you need to bring the bacon to the house. And at the same time, you need to put your feelings and everything aside to take care of your mom and in your case that you beautifully describe it. It's a wonderful book. Thank you for writing it.
Julia Phillips
Thank you so much for reading. That is mind blowing to me that I can make up the story and get to talk with you about it. I mean, it feels like such a privilege and just quite extraordinary to get to talk to someone with your shared expertise.
Dr. Denise Millstine
There's a lot of tension in the book. There's a lot of pulling, whether it's this interface with the bear, which really is the main story. But some of the other tension, Julia, comes from what you've said about the girl's background. So they live in poverty or near poverty. They definitely live without a form of safety net. They are trying to sort of claw their way to being able to pay for the medical bills and right size their job to be there for their mom or be there to take her to her appointments and things like that. Can you talk about that tension with economic stress on top of a major health issue, how you incorporated it in the book?
Julia Phillips
It's funny, the degree to which I incorporated that stress in the book. With every bit I put in, I thought, this is just the tip of the iceberg. There's so much more pressure here. There's so much more claustrophobia here. There's so much more demand here that is not even mentioned in the particulars of her care, or working out of their schedule, or the kind of juggling they do between credit cards or between bills, or what they can put off and what they can't put off.
There's a kind of joke in fiction writing that it's fun to do all of this research to end up with, like a single sentence or a single paragraph on the page and I felt that often what we were getting on the page was so little compared to the experience of this pressure in these characters. You know, I say real lives, but they're fictional, real lives. What is going on with them in their day to day?
I came to this story. This for me was a book I started writing in the first year of the Covid pandemic, and without a doubt, the kind of pressure that the pandemic put on my household and all of our households, I think, was formative, incredibly, incredibly formative. I also entered into my own experience of caretaking and from a very different angle, which is that I had my first child in June 2020, and it was a kind of caretaking, a kind of interaction, you know, through pregnancy and birth and postpartum, prolonged interaction with medical facilities, with health insurance, with exploring like what support is possible or affordable or achievable.
Looking at the difference between what you think should be or what is is available in other places and what is available where you are and what actually exists. I had been lucky enough up to that point not to have prolonged interactions with those systems, and it was a real education for me, and I think all of those feelings and the kind of like number crunching of, as you say, like trying to right size one's life to fit into the pretty impossible to manage constraints of how you continue to function as a household when there is insufficient support really, really influenced how the story would fit.
Dr. Denise Millstine
I love what you said about the research, because this is why we talk about fiction. I think many readers don't understand the degree to which you have to learn about this whole big issue or component of the story. And like you said, that's what makes it rich, that's what makes it authentic. But in your telling, it can be such a, you know, a couple lines or but only if you've done the research did those come out authentically, which is why we try to highlight the featuring of health conditions, like in this story with the mother.
So Ana, the girl's mother, Michelle, has been an esthetician. She's no longer working because of how ill she's become. But she's spent her career inhaling toxic chemicals, that eventually have resulted in this end stage lung disease. I know many of our listeners will think about lung disease and smoking, but can you talk about other exposures that lead to lung disease?
Dr. Ana Zamora
Yes. When you smoke and you have an experience of (secondhand) to smoke, or that can potentially goes to emphysema, COPD or bronchitis, that has nothing to do with interstitial lung disease, which is a disease of the lung parenchyma in the interstitial. However, I have to say that recent, because that's my other passion, telomere senescence and genetics. If you smoke, you are going to turn on a gene. I mean, you don’t know that you have the genetic predisposition to have interstitial lung disease and you can go all your life and not knowing it and not developing, but if you smoke, that is going to turn on the genes. So I'm going to preface saying that interstitial lung disease is like an umbrella, an umbrella of, I'm going to say, more than two hundred (forms) of disease out there.
Dr. Denise Millstine
Wait, say that again. 200 forms of interstitial lung disease.
Dr. Ana Zamora
That's correct.
Dr. Denise Millstine
That is incredible.
Dr. Ana Zamora
Yeah, mind blowing. And all of them have very funny names and very long to learn, maybe Latin. Each of them is very different among its very heterogeneous. Number one is idiopathic. That's the more common and we don't know what the cause is. The second, bunch of diseases that encompasses, I'm going to say, encompasses a hundred, are the exposures and those are called hypersensitivity pneumonitis.
I have to emphasize that the exposures are not inorganic materials, are organic materials. What am I saying? For example, exposures to birds, yes. Having a lovely bird as pet can cause reaction that is not an allergic reaction, is not asthma, is a reaction in our lungs that can cause inflammation, that if you don't detect and cure in time, they can lead to progressive fibrosis, scarring in the lungs.
Dr. Denise Millstine
Let me just restate this because there's a lot here. Right. So the biggest group of interstitial lung disease, which is lung disease happening in the lungs, it's not from the heart. It's the lung tissue itself, that spongy stuff itself the interstitial. The number one is idiopathic. So we don't actually know what caused it. But number two is this huge group of exposure diseases. And that could be from a lovely pet like a bird and also from occupational. Right. I'm sure you're going to go there next.
Dr. Ana Zamora
I want to say to all the people who are listening to us. This is my breath and body. Everybody comes and say, do I have pulmonary fibrosis? And so interstitial lung disease is a synonym of pulmonary fibrosis. It’s the same as saying yes, you have scarring in the lungs. However not everybody has the fibrosis stage. If we caught it in the inflammatory stages, we can cure these patients.
And I have seen very young patients like 35, you know, like I have a bird all my life and nothing happened. Well, yeah. But then one day your immune system decide to react to those proteins that the birds have in between the feathers and or in the poop and usually in females. Because females we are, please don't cancel me, are caregivers. I mean, I know a lot of men are caregivers as well, but we are the ones who are, you know, cleaning the cages or, you know, grabbing the bird, those are the ones who get getting more affected. And who knows, maybe genetics again, we are learning this play a role.
Also down comforters, down feathers, down jackets. So that's why I ask my patients, okay, you don't have a bird, but do you have a dead bird? They're like, what are you talking about? Yeah down products, they have the same feathers who have the proteins and when we inhale it, when we sleep, we inhale it and then we can develop this reaction.
The other is, so many, woodworking, you know people who woodworking, inside of the wood, they leave this thermophilic fungi. They're not going to get infected to you, you just get a reaction again. Like I said, organic. Water leaks, they can predisposed to molds, you inhale it. Old carpets, underneath carpets, molds and you inhale it. You can have it or you cannot. You know, it's very genetic predisposition.
In some areas of the Southwest, not here in Arizona because it's very dry. But they have this device called swamp cooler, which is not air conditioning. And again, is the same process. They have water running through hay and that compresses both to have molds. That's why I don't know if you heard about the farmers lungs. So in the hay that is out there getting moldy, you can breathe it and have this disease. What is the name of this disease the second bunch, hypersensitivity pneumonitis. All right. And there's so many, so many of the exposures.
So the other part is the inorganic because those are organic. So the inorganic is pneumoconiosis, and those are like asbestosis, silicosis, you know hard metal (unclear) that can affect.
The other part, and I think is the one that the mother has, is sarcoidosis, which is a granulomatous disease. That we have no idea, again why it happens. There is multiple theories, but we are not for sure. I read in the book that they say that she was a beauty esthetician and she was exposed to chemicals, but that is not being proven. All of that are just hypotheses, right?
The other big chunk are collagen vascular diseases. I don't know if you heard about rheumatoid arthritis, scleroderma, myositis. So they affect all over, but they can also manifest the lungs in this really, really tiny part called interstitium and making it thicker and cause fibrosis. And just for the audience to understand, when we breathe, we go from the trachea to the bronchi, the pipes to the big alveolar sacs, And the alveolar sacs, they're immediately connected to the bloodstream. So the oxygen goes immediately to the bloodstreams and pass a delicate, like a hair, no, it's like a thinner than a hair, is so tiny called interstitium. So even if the interstitium goes so thick the oxygen is gonna take the time to go to the blood and this is why we have hypoxemia, which is low oxygen.
Dr. Denise Millstine
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Dr. Denise Millstine
I think we see like how complicated this is and how confusing this could be for somebody who's not really thought about it. But then Julia, in the case of the girls, the sisters and the mother, who I think we only hear her name once, Michelle. We typically hear referred to as, you know, their mother. But we can see why it would be so confusing this long list of diagnoses. But, Ana, is it true that for most of these conditions that are not controlled? So let's say there are some that are identified and controlled and they don't necessarily progress to end stage, which is where we see the mother character. But for most of these conditions, they converge on this same phase, which is where we meet the mother in this period where she's thin, she's wiped out, she has a difficult time eating, she has breathlessness. I think most of these conditions, if not treated, if not controlled, will converge to this same phase. Do you agree?
Dr. Ana Zamora
Absolutely. If you don't see them in the early stage, if you don't treat them, they will progress and they will end up in lung transplant. That's the key to identify them early on. And for that you need to find Center of Excellence of Pulmonary Fibrosis. People who finished pulmonary and I went two years in starting just this. This is extra and all my colleagues would be the same.
So here we have a very good group of interstitial lung disease specialists. And we receive a number of patients from the community. I'm talking about 200 per month, that many. And they said, what is this? Because it's very difficult to diagnose and it takes a village. It’s not only me. I need to partner with the rheumatologist. I need to partner with the radiologist, the one who is specialized and thoracic radiologist. Not every radiology they need to do extra years, long pathologies. And then we get together every week in a conference that we call multidisciplinary, because it involves a number of disciplines to get a consensus diagnosis and consensus plan. Unfortunately, some of them, they come late and there is nothing that we can offer. And I can talk about we can offer to those patients.
Dr. Denise Millstine
So if you have this diagnosis of interstitial lung disease, ideally you would seek care in a center of excellence. But for some of the things that you've mentioned, some of the exposures, or if you're somebody who's had a bird, if you have any symptoms, you could always talk to your primary care team about doing some early testing, because as you've made the point, early detection is really key if we're going to be able to intervene in a way that halts the progression.
Julia, I want to talk about how beautifully you described the girls understanding of this diagnosis. So there's this description from Sam. She's thinking back about when she learned about her mom's diagnosis and she says, “That was back when she, being Sam, pictured pain as something swift and final. She understood better now what it actually was not a glass dropped onto a tile floor. One terrible burst, but a tree required to grow over years in a space that limited it. Branches curled in on themselves, leaves dropping a living thing that was forced relentlessly to submit.”
What a gorgeous description of what chronic disease is like in terms of it not being this sudden, but this really creeping set of symptoms and developments. Can you just talk more about that?
Julia Phillips
I really love and appreciate that you read that passage because it also reminds me of lungs. You know what I mean, this kind of shape of the tree and the branches. The mother's trajectory of disease was specifically inspired by this exposé, I would say journalistic exposé ten years ago in “The New York Times” about manicurists and nail salon workers and the kind of environmental exposures they had at the job, and then the aftereffects and.. Ana, exactly as you said, it talked about in these examples, lots of folks who, you know, their doctor said, like, we can't tie we can't tie this diagnosis that you have now to the exposure you had then, it might have nothing to do with it. And yet you are in a place where you are quite sick now, where you've like been working through sick. All of your colleagues are sick, you've been working through sickness. And we're kind of at the point where there's nothing to do about this.
And so I wanted to model her trajectory off of that. And I also wanted to a little bit picked the, you know, like the growing understanding that the girls have and the growing misunderstanding that the girls have about their mom. That they don't fully, Sam, at least our main character doesn't fully inhabit and understand her mom's experience of disease. She's scared about her mom dying, she's worried about her mom dying. And so she can't bring herself, even through years, to kind of really talk honestly and openly about what's going on or how her mom is feeling even. And I think this is often the dynamic in any family, and maybe it's between siblings, maybe it's between any set of folks. But people kind of fall into their roles and then can get really frustrated at other people who are not, you know, their family members who are not recognizing what they're doing or not sharing the load equally. And Sam has really fallen into a role where her sister does the majority of the care in some ways, and she kind of chooses not to engage.
I think, sadly, like can be a role. I think a lot of us can fall into that our whole lives, where your sister always takes care of this, so you don't do that, or your brother lives nearby your parents, so he takes care of this and you don't. Or you know that this kind of allocation into certain slots or into certain responsibilities, that doesn't feel fair, maybe to all the people who are involved in it.
Dr. Ana Zamora
What Julia told me, describes, is I see it every single day. It's the family interactions. The dynamics, like one takes the role of the caregiver and some of them are in complete denial. Whether they don't accept that or they are working for a miracle, depends of your faith is very hard for us to relay the message of what is happening.
And so that's why we need again, it takes a village. So we have a palliative care team that is involved and then palliative care come and talk to the family. It’s a wonderful resource. But I mean the resources are there. Unfortunately not everybody knows about the resources.
Like when I was reading the book, I was thinking, where is palliative care? Where is hospice at home? I mean, she should have a nurse that comes do instead of the sister getting all the burden. That's the reason we have, you know, palliative hospice nurse, that goes and take care of her. I was reading about how Michelle, the mother, it's sometimes peeing herself because she cannot make it to the bathroom. And that brought tears to my eyes. We as a health care system in America, we have the resources to help. But unfortunately, not everybody has that knowledge, right?
Dr. Denise Millstine
It's heartbreaking, and especially as you see it come to this phase of the disease. Ana, I wonder if you'll comment about how you know when it's kind of progressed to this end stage. We saw Sam bringing her mother to the doctor, and she described her as looking worn out, too thin, her lips were cyanotic, touched blue. So is it how the person with the lung disease appears?
Or then later in that same episode of care, Sam is given some of the actual measurements from the team who essentially are saying, this is really bad. I'm sure the answer is that it's a convergence of the two, but can you just help listeners understand the appearance of how the patient is doing. And then also some of the numbers that you're following as you're getting to this end stage.
Dr. Ana Zamora
When the patient is becoming at the end, they became really thin. Why? There is not enough oxygen. The oxygen saturation in room air that you and I are breathing is 99%, 98%, 97%. When it goes below 90, you need oxygen. And this is the supplemental oxygen. You can only get enough liters, right? For example, that the portable concentration to go out and allow you to do your daily activities either to four liters, six liters. When you cannot move, if you say is when you get to the end stage, when you need more than ten liters, and when despite those liters, you became blue and cyanotic. This is when your body starts overworking. You start breathing a lot to have more.
I explain to my patients, is the equivalent of you being on a treadmill 24/7. Because you are panting and breathing overtime, you're overworking yourself. If I go to the gym 30 minutes, you know, working out, I'm gonna lose weight. So now imagine panting like this 24/7, even in your sleep. That's why you start losing all the weight. Your oxygen doesn't go to the tissue. Then you have the synoptic.
In the case of Michelle, the mother, the heart was affected as well. Because when you have very low oxygen, not only the lungs are working overtime, but the heart is working overtime. And that number it's about is referred to pulmonary hypertension, which is different from hypertension systemic. It’s a localized high blood pressure in the right side of the heart. And it’s very high, where I'm telling you that severe is a number of 50, Michelle had 120. So it's a miracle that even she was alive. We were at the end. And that's the reason she has the lower extremity edema, you know, the puffiness on her feet. That's what she was cyanotic. This is why she couldn't move.
Dr. Denise Millstine
Wait, can you say about that lower extremity edema again we say that. Can you describe that for our listeners who maybe haven't known what to call that or realized what that is?
Dr. Ana Zamora
Puffiness in the legs, swelling in the legs, because the heart could not have enough, it cannot. The pump is failing. Not only is easy to pump it out, but to return it, you know, to the heart it's very hard. And so all the blood is stagnant down there doesn't have strength coming back to the heart and the lungs. And that's what has been described in the book. So that's the end.
And at this point they describe Michelle as young. I don't know how old to us. I, I did math in my head. So I was thinking she's maybe 55, you know, almost 60, which is a great candidate for lung transplant. However, when you have these very high numbers, 120 of your heart, the mortality after a lung transplant is really high. So they don't do well unless you do double heart and lung transplant.
And I do not think the sisters were given the whole story from the physicians. They were not advised well at the very beginning. You know, we have a pathway; this is what we're going to do, we're going to give you medication, if the medication doesn't work, then I'm going to tell you, you know, help you out with a lung transplant, a specialist if the lung transplant is too risky. Then you go palliative care. So we have pathways and algorithm to help these people, especially for the caregivers so they don't feel alone.
Dr. Denise Millstine
I wonder, Julia, the experience of having expert pulmonologist reading your book and being like, no, don't do that to the doctors that are featured.
Julia Phillips
No, I love it.
Dr. Denise Millstine
But actually then the truth is that is the reality of some experiences. Sorry. Go ahead.
Julia Phillips
No, I just love it. It's like the greatest joy. I feel like writing for me is the best way to learn about things and part of the learning happens in the research and the writing. And so much of learning happens afterwards. You know, when I get to talk to people who know everything and then I get to learn from them, it's such a joy.
It's fascinating, you know what you're saying about, like, not understanding what the options are. Because I think Sam's character in particular, not only when it comes to her mom's disease, but in many aspects of the story as it shakes out, really like cutting herself off from health or not exploring fully the options that are available to her because she has a certain idea of how things are going to be. And she holds really closely to that idea.
And I think that feeling and reading and feeling like, no, oh my gosh, why aren't you seeing what is there, what's possible, is something that I wanted readers to have with her a little bit, you know, I really wanted the experience of reading Sam to be one where you feel immersed in her and you understand why she has become the way that she is, and also where you sort of take from her experience like, wow, so these are the consequences, closing yourself off to the world. And when you do that, it can be really life or death. It can really be enormously impactful. And she's shut herself off for a long time.
Dr. Denise Millstine
We just heard from Ana how serious the readings were and the clinical picture of the mother. You know, when they go to the doctors. And you mentioned, Julia, that Sam is struggling with this idea in many ways, that her mother is going to die. But during this visit, she has the thought or says in the book, their mother was dying, Sam and Elena and their mother herself knew it.
Would you talk about that confronting of death being imminent and how you saw Sam sort of negotiate that as it comes to the end. And I'm just going to promise listeners that the mother passes away is really not a spoiler in the book at all. Can you talk about that character navigating death and maybe just go straight to some of the surprises she has after her mother passes with grief that she in many ways thought it would be a relief. And in fact, there is clearly a hole left when her mother passes away.
Julia Phillips
Yeah, absolutely. I was really interested in that for her character, because she has such a strongly held paradigm in so many ways about how things are, and that is sometimes dissonant with how things, the external reality or other people's reality. I also was so it's interested in that for her, I was interested in that for everyone. I think I know I do this, I don't maybe lots of people do this, maybe we all do this, but this sort of like exercise of free grieving or imagining how it'll be if this dreaded consequence comes or this dreaded end comes.
And I think this can happen with the death of a loved one. I think it can happen like the end of a relationship, or a loss, or of any sort. Or imagine how you'll be in that situation and then perhaps you imagine that the imagining prepares you, that it's a sort of like rehearsal that is getting you ready for how it'll be.
So she has had a lot of time and spent a lot of time imagining what it will feel like when her mom dies and imagining what the aftereffects will be and how they'll handle it. And that imagining, it turns out, did not prepare for at all. It didn't prepare for the logistics. It didn't prepare for the grief because I think, as it always is, there's no amount of picturing how it'll be that actually matches with the experience of a loss, of an ending, of grief.
It's really surprising, really, really surprising. And it's immensely surprising to her after so much time telling herself, once this journey of caretaking ends, it's going to be devastating. But she says earlier in the book, like, I've been devastated for a long time. I really am in a lot of pain and really, really sad for a long time. So the idea that I will continue to be devastated and sad is not unknown or not horrible. It'll just be easier, maybe because I will not have to logistically deal with this, and then the fact that it's not her experience.
Dr. Denise Millstine
That's so beautifully said. Thank you. Ana, I wonder if you'll share with our listeners what you often say to families when death from chronic lung disease is imminent in terms of preparing them and supporting them. What are some of the pieces of advice or information that you provide?
Dr. Ana Zamora
We have, as I mentioned earlier, an interstitial lung disease support group. Where it's every other month and is for patients and it's for families and palliative care comes there. So those are the ones who deliver the big chunk of information. But in the office, well number one, whoever of the listeners who wants to be an interstitial lung disease doctor, we need to be very compassionate, okay. Because this is a chronic disease. And if it doesn't get caught up on time, they're not going to do well. And there's going to be a long road for the families and for the patients.
Usually ask me, when am I going to die? When are they going to die? And I always says, it would be very arrogant for me to tell you a day or a year because we don't know what would we, we don't know anything. We're just instruments of God. Or if you are not religious, the universe, whatever you want to call it, Zeus, whatever. And we're just here to help you, and I'm going to be with you in this journey every step of the time. So if you have shortness of breath, if you exacerbate, if you feel things are not normal, you have my support. You send me a message on the portal and we and my team will take care of you.
And I think that's what the family needs to hear, because they're scared. They don't want to be alone. And this is a lot of unknowns. And give him a pathway. Like if you are infected, we can give you antibiotics or a touch of steroids. If you need too much oxygen, come to the hospital. We're here for you and we can give you steroids in the vein, not oral. So I think writing for them a map of what is going to go is very important because then the unknown becomes less unknown. So that's one of my advices for them.
Julia Phillips
That's hugely meaningful. Denise, you mentioned at the beginning that the book, you know, can get quite dark and the darkness in it is, is that being alone, you know that the darkness in it is exactly that. And the flip side of the support that you're describing of feeling like to whatever extent it's, it's true or not, but feeling like, no one is here to help me or no one is going to step in where I need it.
Or like if I if I'm not keeping my own head about water here, I'm going to drown. And I think, unfortunately for me, a lot of the pandemic experience ended up being a perception. But that was what a lot of us were going through. And I think the time since has been a lot of education and a lot of learning about how we how we are, how we can be here for each other.
In many ways we can fall short of that vision, but it is worth it to push for. It is worth it to push, to give each other that support and to say to each other like, we're not alone in this. I'm here for you. I'm here, you know, you can always reach out. It's just makes all the difference in the world.
Dr. Denise Millstine
I love what you said, Ana, and how you echoed that. This condition takes a lot of compassion from the providers, from the family, the caregivers, the community who surrounds this person. It's really the critical component that as somebody is living the journey of progressive and extreme long dysfunction, that really being held is the best we can do, and being there for people with whatever the next corner brings.
So I'm really grateful that the world has compassionate lung specialists like you, Dr. Zamora, and compassionate writers like you, Julia, who bring the reality of this onto the page and into the story. I want to remind our listeners, there is a bear. There's a whole part of this story that has to do with the bear and the sisters relationship and so if you haven't read the book “Bear” by Julia Phillips, go out and get a copy and read it right away. Thank you both for being with me here on “Read. Talk. Grow.”
Julia Phillips
Thank you so, so much for this.
Dr. Ana Zamora
Thank you.
Dr. Denise Millstine
“Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
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