Podcast Episode 93: Natalie Silverstein

Jean: Now?

Alison: Now, now! There it is. We did it!

Jean: You did it! I just watch in awe.

Alison: You give me your your confidence. You give me confidence to continue it.

Jean: That’s right.  I put all my chips in your corner.

Alison:  In my cookie.

Jean: Yes, exactly.

Alison: the juice is worth the squeeze.

Jean: Thank you. Matthew.

Jean: I know— Matthew, this isn’t your, uh, quote that you devised, but Matthew would use that a lot for me. Mom, the juice is not worth the squeeze,

Alison: Which I love. I use it now all the time.

Jean: Yeah, it’s a good one.

Alison: Yeah, because I’m not going to be squeezing stuff.

Jean: No more squeezing stuff that’s not giving the amount of juice.

Alison: That’s right. So speaking of good juice is today’s interview, right?

Jean: Yeah, that’s for sure. Today we have Natalie Silverstein and she is an author, a speaker, a public health advocate and hosts a podcast.

Alison: We got the pleasure of reading Simple Acts of Care, which was just amazing how to help when loved ones are hurting. And it’s, um, it’s really talking to like the, the step beyond the caregiver. It’s like the friends of the caregiver or the friends of the person going through something. It’s really a really good, a really good book that reminded me of a lot of things. Right?

Jean: Me too. Allison. And I also think it, it really helps you have even more empathy for challenging situations. And sometimes saying nothing is very powerful. And, and again, you know, not always having to say something… And I think so many of us feel we have to come up with the most wise, most helpful thing to say, thing to do. And she’s just saying, keep it simple.

Alison: Yeah. And give yourself grace.

Jean: Yeah.

Alison: I can’t wait to talk to her. Yeah. Okay. Here we go.

Natalie: Hi. How are you both?

Alison: Thanks for doing this. I’m Allison,

Jean: And I’m Jean.

Natalie: It’s so nice to meet you both. Um, can I also, before we begin, tell you the craziest story. Jean, you’re kind of not going to believe this. So my husband, um, uh, his best friend from college, passed away a few a few weeks ago from early onset Alzheimer’s. He was 60 years old. So that’s been heartbreaking. And then literally a week later, his, my, my father in law passed. So it’s been a tough time for my husband of late. But the celebration of life for his best friend is happening in July. And I’m here in New York City before I go out to Long Island where he is. And he asked me to grab his photo albums from college and and slightly beyond so that we could pull out pictures of his friend Scott for the memorial service for the video. And my husband after graduating from Denison, he went to a small school in Ohio. He worked in Arizona for a company that made ball bearings. And I’m flipping through the pages. I’m getting somewhere with this, and I come to the period where he’s in he’s in Arizona, and I can clearly see that he’s at office parties and things. And you’re not you’re kind of not going to believe this, but there is a photograph in this thing of Alex Trebek, just Alex Trebek.

Alison: Oh my God,

Natalie: That’s him.

Natalie: I’m I’m almost certain it is. The year is 1990 or 91, and he’s clearly at some sort of conference. And I told my husband, I’m like, you’re not going to believe this, but I’m meeting Jean Trebek in two hours. And I just opened this book, and this is a picture of Alex Trebek. Why do you have a picture of Alex Trebek in your photo album? And he said he must have been at a like a conference. Like, um, and maybe Alex was there speaking as a motivational speaker. He has no recollection of this, but I find these things to be sort of fascinating. Right? Like.

Jean: I find that fascinating too. And I think that’s a sign that Alex is letting us know he’s circling. He’s here. He’s not circling. He’s here. And I actually said to him, like, I sometimes I talk to him in my thoughts and, and I’m like, can I get a sign that you’re, you know, that you hear me and that you know that.

Natalie: So, I mean, I, I could have opened that album to any other page. I could have opened it tomorrow after I spoke to you. I could have never opened it. I could have grabbed the albums and stuck them in the bag, which was what was I, I was going to do, but I start flipping through to make sure that that the right ones not not, you know, I don’t know, some high school thing because of course he didn’t know Scott in high school, and that’s the page I opened to and I, I don’t know. I do believe in these things. And there’s a chapter in my book, my new book about this how if we we will see the signs if we’re looking for them. Right. And, um, I don’t know, that just felt really meaningful to me. So I wanted to share that.

Alison: So beautiful. I think the synchronicities are really meaningful.

Natalie: It’s crazy. So anyway.

Jean: I love that you shared that and it really means so much to me. And um,

Alison: Alex looks good there.

Natalie: He looks amazing. Well, we all looked good in 1990.

Alison: Yeah we did. We all did look good. Yeah.

Jean: Right, right. Let’s see. 1990 Alex and I got married.

Alison: So that was right then, right? Huh?

Jean: Yeah, yeah.

Alison: That’s really great.

Jean: That’s great.

Natalie: Crazy story. I know, I know, I love those types of things.

Alison: Your book, The Simple Acts of Care. Um, we were thinking, I was actually thinking while I was reading it, how much caregiving Jean has done and I have done and you have done.  How much that kind of like, um, it sort of binded us together, right? Bound us together in a way. Like we had a lot of stuff in common about that. Do you know, and that’s why your book was so interesting to us.

Natalie: I’m glad. Thank you. And you were kind of you’re kind of the only people that have read it beyond. And it’s again, you saw a version. It’s not even the final version. I’m receiving the final proofs in the next few days because it comes out at the end of the year. But I felt like, um, this book is a lot more of probably the topics that, that you would be interested in speaking about. The other two books were parenting books, essentially, which were fine and interesting, and talking about how service is sort of the key to raising kind and compassionate and empathetic children, which I think is always a good topic. But I’ve moved on from that into this sort of caregiver support role. So, um, yeah, so I thought it would be, would be good to share that piece as well.

Alison: Perfect. It’s really wonderful. Um, and, and how did you, how did you make that transition from doing like from the parenting… Because I was very familiar with your parenting books and sort of your Instagram and all of that. How did you make that transition to this?

Natalie: Well, you know, these stories have been bubbling up inside of me all of these years since my husband was diagnosed about ten years ago now. Um, he’s, he’s, he’s 59 and he was diagnosed right before he turned 50. So, um, you know, and I’ve over these years also have lost my own mother and I’ve helped a friend who passed away from a glioblastoma at a young age. Um, and so I think as we get older, these sort of, um, grief and loss and caregiving and support roles, it has just hit me in the face over and over and over again, the different ways that people want to show up authentically and they want to show up helpfully and meaningfully, um, and many times out of, out of complete ignorance to it or just not knowing what else to do or to say, they sort of center themselves. Right. And I’ve done it a million times and we all do it. We’re all so anxious to be seen as the good friend and the good helper and the savior of this, you know, saving the day that we sometimes move into a situation and offer words and actions that aren’t necessarily helpful to the person going through a painful situation.

Natalie: And that could be a divorce, that could be the loss of a dog, that could be the loss of a job, the loss of a significant other, or in my case, a diagnosis that was, you know, wildly unexpected and, and very challenging. So I’ve just gathered all these ideas and stories. And as I was thinking about a way to put them into the world without it being a memoir, because I don’t feel comfortable sharing my family’s story in an intimate way, because we’re still living our story. And it’s my husband’s story and it’s my children’s story. So it wasn’t going to be a memoir. And so the simple acts idea from the other two books kind of percolated a little bit. And I had all these essays and ideas, and I finally just pulled the trigger. And again, it’s going to be a very small book. It’s going to be one of those sort of gifty kind of books that you’ll see in the front of the store, you know, on the counter, um, in the, and it’s illustrated really beautifully. And it’s just a hope to sort of help people to, to just slightly shift their, their thinking around the way that they show up for other people.

Natalie: And it’s important for me not to make people feel badly about the way they have been showing up. Right? That’s the needle threading I had to do, which was I wouldn’t want anyone to read this and be like, oh my God, I’ve been saying the wrong thing all these years. I feel terrible. Or like Natalie is shaming me for the way that I show up for other people, which is I bring casseroles and that’s I’m going to keep doing that like you do you. Right. But I, so I, it was a, it was a very, um, difficult threading of the needle to make it like I do these, I do it to I’m I’m, I’m guilty of it too. Let’s all just sort of rethink how we center the person who is going through the tough time and really show up for them with active listening and, and really paying attention and taking ourselves out of the equation. Um, and so I think that that’s, I think we can all use that help. And I hope that it’s, I hope it’s received with that, um, the way that I intended it to. So we’ll see.

Jean: I think you nailed it. Actually, I did notice that I thought your writing was very thoughtful. And when I saw myself, um, both being on the receiving end of care when Alex passed away and when Alex was still here. You know, it’s different kinds. And I know it’s hard for for people to. And a lot of what you share, I could totally relate to and and again, to reiterate your your writing so thoughtful. And so I don’t think anyone’s going to take it.

Alison: In a bad way. Exactly.

Natalie: I hope so. I hope so.

Jean: It’s so Beautiful. And there were so your chapters. Another thing I loved is that they’re broken up into small, really bite sized chapters that you can just easily digest.

Alison: And, and I thought they were really interesting. Can you talk to tell our listeners a little bit about empathy versus pity?

Natalie: Wow. Yeah. So that’s a big that’s a big thing. Pity was, if I’m being honest, pity was the driver of the whole project to some extent, because I had been sort of accumulating and, and thinking about ruminating on that face, the pity face which I referenced in there and that I have seen, by the way, I’ve seen referenced in fiction, in nonfiction, in and other memoirs and grief memoirs. You really can’t read a book about grief and loss without someone mentioning the fact that someone comes at them with this face, right? That a face that no one wants, no one wants. Okay. Um, and so it’s and so in the describing of it and in the summary at the end of the chapter, I wanted to just sort of gently suggest that we all kind of neutralize our faces and try not to give this like, oh, you know, this puppy dog thing that with the lip and the head tilt and the. Mhm. No one is going to receive that with like joy and like comfort. I don’t know it. So it really helps. I hope it helps people to think twice about how they approach someone physically. But, um, you know, as, as empathy is a big piece of, of my work with families and teens around how we can be present for other people, right? So empathy is, um, kind of showing up by understanding what the other.

Natalie: Trying to put ourselves in the shoes of the other person. Right. And so again, the work that I do in helping families to do service and volunteerism, meaningful work in the community, the work that I do around teens finding their purpose through social impact work or whatever, is to sort of stretch or to flex that empathy muscle, right? So I don’t think we can be good citizens and good friends and good neighbors, unless we at least try to put ourselves into the shoes of another person and to think to ourselves, what might that person need right now that I can provide for them as opposed to like, what would I want if I was, you know, like what– really think about the other person and what they’re going through and what they might need. So empathy is such an important muscle and it is sort of the basis of all service work, right? We want to build a more empathetic, you know, world, period. And I think our government could be a little more empathetic to people of all different. I mean, you know, there’s just layers and layers of what empathy could do if we were better at it.

Natalie: And I don’t think we as a society have as many opportunities to flex our empathy muscles as we did a long time ago, when we all sort of looked out for each other. And you helped your neighbor to get food or to shovel out their driveway, I think we’re all very much in our silos now, and that’s and we’ve lost something in our empathy. So, and pity is, is this kind of I find it to be like a negative thing. It is like feeling sorry for someone, um, without really taking into consideration how that might feel if somebody was directing that at you. Right. We’ve, we’ve all been pitied. And I don’t think anyone wants to be pitied in any way because it is suggesting that you are not capable of handling this situation that you’re being faced with. Right. Pity sort of says, oh, you’re not going to make it. Like, oh, poor you. It just feels diminishing of a person. It feels like you’re not seeing them for who they are and what they’re going through and what they’re capable of, of overcoming. And so I think when people approach us with these pitiful faces and with expressions of pity, um, I think we just need to kind of wipe pity off the map here, you know, because, you know, again, no one wants to be pitied.

Natalie: It is at most, you know, if you’re being nice about it, it’s it’s like kind of unkind. And if you’re not being nice about it, it’s kind of cruel. You know, it really makes people feel worse. There’s nothing about being pitied, nothing about being pitied that makes us feel better and so, um, I just wanted to raise that. It would be hard to write a whole book on pity. But pity was sort of this kernel of a thing that I, i really rejected when people were clearly pitied. The fact that my very young and vibrant and healthy husband was diagnosed with this really difficult neurodegenerative disease, and our children were very young, and the very last thing I wanted was for anyone to pity us. Because we are a strong family, we are surrounded by love and community. We will do the very best we can to overcome this, to live with this, to successfully thrive with this, and i don’t need your pity. I need your friendship. I need your love. I need your support. I need your understanding. I need you to walk beside me. I don’t, I don’t need your pity and no one does.

Jean: Yeah. So, Natalie, what’s your take when someone says as a response, when you, when you, uh, you give the news that something is going down in your family and they say, oh, I’m so sorry. Um, you consider that a pity response?

Natalie: I think, I think I’m so sorry to hear that is, is a, is a valid response. They are sorry to hear that. Right. I am sorry to hear that someone has been diagnosed. That is, you know, that’s a a natural human expression. Um, and it is, you know, but I would be, I would go beyond that and say, I am so sorry to hear that, you know, tell me, tell me what’s going on. Share with me as much as you’d like to share with me. How can I be helpful to you? Here are a couple of ways that I can be helpful to you. Um, right now, right now, if, if those things are helpful and if not, please, you know, take them and put them in your pocket and pull them out any old time. I’m always going to be here for you. I’m here for you. Um, there are lots of different ways that you can show that you support someone without saying, oh, I’m so sorry. Oh, that’s too bad. I wish I oh, you know, like there’s, there’s a lot of that kind of stuff that is, that is wildly unhelpful. Right? So, um, straight out, I am so sorry to hear this news. I’m so sorry for your loss. Right? Because a person is sorry for the loss. And I’ve learned a lot from Megan Reardon Jarvis, who is this incredible, um, trauma therapist who wrote the intro to the book and has her own podcast and she runs something called Grief Tastic, where she gathers together all of these grief experts and what she says when someone says, I lost my mother. She says, tell me, what’s your mother’s name?

Alison: Yeah.

Natalie: You say my mother’s name was Susan. And she says, tell me about her. Like with a big smile on her face, she is clinging on every word that you’re going to tell her about your mom. And then she might share something about her experience losing her parents in a traumatic way, and then other wonderful things because she’s a therapist. But there is a way to approach a person that is so grounded and so human and so realistic without being like and again, to another chapter in the book, without using a lot of platitudes and a lot of cliches. God did not need another angel.

Alison: Oh, yeah.

Natalie: You know, God didn’t need another angel. I’m sorry. He didn’t. I don’t know God personally, really, but I, I’m pretty sure we needed that person here. Any of these things. Um, are those phrases and the platitudes and the cliches and all the like, oh, what are you going to do? Like, no, that’s not that’s not super helpful. So, um, I try and just be really intentional about the things that I say.

Alison: Yeah, yeah. And that’s, and that’s, uh, I know for me, I had heard so much of that sort of, uh, um, oh, well, or she’s better off,

Natalie: Better off. Yeah. That’s a good one now. Right ..or at peace. Not suffering. Which are, which are, which are, you know, those are valid things, right. You know, I had a 90 year old mother and, and she, you know, I hope she’s, I hope she was at peace. I hope that that’s true. We, we say these things because we don’t know what else to say. Right. Say that a number of times in the books, all of these things that we do and say is because we don’t have the tools in our toolbox, we’ve not been taught or we’ve not experienced these things ourselves. So we don’t really know what might be helpful. And so we pull out these platitudes and we pull out these faces and we pull out these things or food, let’s send food. Food’s going to make it better. Like it might not. Um, so we do these things because we don’t know what else to do. And that’s okay too. I, I think this comes across and I hope it does… We just have to give each other abundant grace and give each other a break and know, or at least assume that everyone is doing everything out of the goodness of their hearts and doing all that they can with the tools that they have, right?

Jean: No one’s intentionally saying something that hurt your feelings or you’re like, really —

Alison: Is that the best you can do? Right.

Natalie: Right. Right, right.

Jean: Yeah. I, um, I mean, we could spend so much time with you, Natalie and I, I want to, uh, there’s a few other things. So, um, you write a chapter, which I found very interesting. Curb your curiosity.

Natalie: Yes.

Jean: And I was sharing with Allison before we got on the Zoom call together, that I also think that relates to who you are in your friend’s pool of friends. Are you super close? Like, are you a best friend or are you someone that you never hear from and then all of a sudden they’re like, they’re, they’re coming with.

Natalie: So sure.

Jean: please share A little bit about that topic.

Natalie: Yeah. I mean, I think that we all have this natural curiosity when something like this happens, either a diagnosis or a sudden, sudden death, like what happened? How did this happen? And I really thought about this again. It’s taken me a few years to really sit with it and think, I really think it’s this natural reaction we have as humans to say, I need to know what happened so that I can ward it off and not have it happen to me or someone I love.   And so the question about when did the symptoms begin? How did you know? How long have you known? What did the doctor say? All of these things. And if the person who’s going through it or their closest, you know, caregivers and and companions get these questions and they get them repeatedly from so many people. Right. It starts to feel like the grand Inquisition, right? It really feels intrusive. Um, in some instances, particularly with a neurodegenerative disease like Parkinsons or others Alzheimers. Um, you may be keeping the details of that to yourself because that may provide information about how far along you are in your trajectory of the disease. And so then everyone’s going to be like assuming all these things about how much longer you have and all these crazy things that are not relevant. Not relevant at all. Um, I find this pretty frequently when unfortunately, when someone has taken their own life, the details of that are incredibly important. And that could be because we have so much information at our disposal in our hands, and that when someone famous has, um, unfortunately taken their own life, we are somehow entitled to the remote, the tiniest details of how they did that.

Natalie: Where and how and who else was in the house and who found them. These details are none of our business. Not at all. And that person is still gone from this planet by their own hand. Which is tragic. And the fact that we, as a society feel entitled to this information when it happens to a famous person, um, is really kind of unfortunate. Um, and it’s because we have so much access to information. But you know, again, if someone has received a difficult diagnosis of lung cancer, for example, whether or not they smoked is not how or where they were exposed to something or secondhand, none of those things matter. What can we do from today forward to help this person navigate this very difficult situation? And yes, I think, as you were saying, Jean, in terms of if someone is a closer person, you’re going to share more of these details. And then perhaps someone who’s not sort of inner circle has no right or access to these to these details. They need to if they need to know at all. This is what’s happening writ large. And then if they want to be helpful, which would be lovely, here are the ways that you could be helpful. But going back and sort of doing an autopsy, if you will, of how this came to be or how long you’ve known, and I don’t know, it’s bizarre. It’s like some people have this feeling like if they didn’t know from the very beginning, they’re not really your good friend or something. I don’t know unless you’ve gone through it yourself. You really have no right to judge in these situations.

Alison: Exactly. And I like it’s sort of like two pronged curiosity, right? Because on the one hand, what you were saying a minute ago, tell me about your mom.

Natalie: Mhm. Mhm.

Alison: What’s a great memory or one type of curiosity that brings one response? But that whole like that whole, um, like, did she have an itch over here? Yeah. Sometimes I have a thing. Right?

Natalie: Because sometimes I have that itch. Exactly.

Alison: And and that that kind of curiosity is right.

Natalie: It doesn’t matter. It’s not going to bring the person back. Right. The curiosity around tell me about your mom is, um, you know, tell me your favorite story about your mom from your childhood that is trying to draw us closer together, that’s trying to, to, to bring you comfort. And again, as I mentioned in the book, I believe that people who have lost someone, they want to say that person’s name. Yeah. You know, Megan, Megan talks about this all the time. She says her mother’s name every single day. Mhm. Because she doesn’t want the world to forget her mother, and she doesn’t want to stop hearing her mother’s name. And if you use her mother’s name, it is so comforting to her. And she still has voicemails that her mother left and those types of things, like that’s a different there’s a connection there. It’s like trying to, to recognize that grief never ends, that people will grieve their people that they loved for their entire lives, that grief may change and ebb and flow, but. And it goes through different. It morphs and changes, but they will always grieve their person, right? On the flip side, if someone’s going through a really harrowing time with a very difficult diagnosis, I, you know, my friend who was going through a glioblastoma, I didn’t need to know the ins and outs of it. I just picked her up in my minivan and took her for her treatments and brought the cookies and made her laugh. That’s it.

Alison: Yeah

Jean: I think that’s so beautiful that it’s sort of like you’re not expecting something.

Natalie: Right

Jean: Because even when you are going through something really hard or challenging, it’s just another burden that you have to respond now.

Natalie: That’s right.

Natalie: To that person, it’s like, okay, now I’m taking care of you too,

Natalie: Well that’s right.

Natalie: That’s all over the book, right? It’s the burdens that we place on the people who are going through the thing. And so that’s why I always I started off with like, let’s reframe this. Like, let’s put the person who’s going through this thing at the center. And so therefore, the chapter about how to actually offer help, when you say to someone who’s going through a tough time, what can I do to help? Give me a job? You must need something. What can I do? Oh, so now I, oh, I have to, I have to make you feel better by giving you a job that I don’t even know what that job could possibly be. So it’s a burden on me. I’m going through something and you’re like, standing here insisting that you must help me. Who is this about again?

Natalie: i promise you, if there was something I had for you to do. I would ask you to do it. If I felt comfortable asking you to do it right. So I try to help people just think differently about the ways that they’re potentially burdening the other person. So this curiosity is burdening the person, right, with the need to explain this to you and make you feel better, that you don’t have this disease, or that the person in your life is not going to get this disease. Um, the, the platitudes thing is, is a burden, right? You’re throwing these platitudes at someone who’s going through something really painful. Assuming that it’s going to give them comfort when in fact it may not, it may infuriate them. Right. So, so it’s just what can we do to minimize the burdens that we’re placing on people who are going through a tough time, but more importantly, show up meaningfully, carefully, lovingly, thoughtfully. If I text someone who’s going through a tough time, I always say, thinking about you today, don’t respond right, don’t respond. Don’t feel like you need to respond. I bought you a ticket to this thing. If you want to come, great. Let me know if you don’t want to come. Totally ignore this. Yeah you are. So what you’re doing is saying, I see you. I’m thinking of you, I love you. I hope that you’re okay. Here’s something I’m offering to you. But if you don’t want it, if you’re not here for me today. Just just ignore me. And I’m not going to take offense by the fact that that you haven’t responded to me, right. You know, when my husband’s mother father passed away a few weeks ago, people texted me and I got a lot of texts, and then someone texted me later and said, you never responded, so I’m worried. Like, I didn’t respond because we were burying my father in law, right? Like it’s not about you. Yeah. Send me another text and say, hey, hope everything went okay. I’m thinking about you. That’s all. Right. Right.

Alison: But the words you just said. I’m worried about you.

Natalie: Mhm.

Alison: Bug me. I can’t even describe it because for some reason, like I’m leading a life or I’m doing a thing, right. Like that sort of. Oh, I haven’t heard from you. I’m really worried.

Natalie: Worried –  i know.

Alison: Not. I’m a full adult, right?

Natalie: Right. Right.

Alison: Do you know, like  Im not a  fawn in the woods with a broken leg. You know. Right. If I need something, I’ll let you know.

Natalie:  That’s very akin to the pity conversation, right? It’s right there with the pity. Right. So you’re saying I can’t. I’m a grown adult. You’re thinking I can’t take care of my business like I really can. And I think we all want to be seen in our as our full selves, as people who can handle this. And if we can’t handle it, I promise you- I’m going to reach out to the closest people in my life and say, I’m really having a tough time now. Maybe I’m super evolved and there are people who don’t reach out in that way and say, I really need your help. And maybe there are people like that who and, and we all need to get over that. Everybody needs help sometimes. Right. I always say this when I’m talking to folks about when we have to teach kids that when we’re doing service out in the community, it’s not like us saving them and coming in like on a, you know, on a horse, like white knights. No, no, no. We are here to help because we have the advantage today of being able being in a position to help because someday, for sure and for certain, we’re going to be in need of help and other people are going to come and help us. And we have to accept that help graciously. And so that’s all it is. It’s a, it’s it’s we’re all on even footing here. We’re all on even footing.

Alison: That’s exactly right.

Jean: It’s so true.

Alison: It’s because that is, I think in this day and age right now, we’re in a time when that is not the thinking.

Natalie: Yes.

Alison: That we’re all on even footing. Right. Or let’s make a conscious effort to remind each other that we’re on even footing, you know? Right. And, um, also what you said, you say a couple of things about keeping things normal. Um, one of my friends was going through lung cancer and I would just go there and we would talk about I was there all the time, but we talk about like movies and we laugh like not everything was like, oh.

Natalie: Lung cancer,

Alison: Like there were times that we would really be laughing.

Natalie: of course.

Alison: You and I, through really tough times, we would, we would laugh, you know, and, and I love that you said that you picked up your friend in the minivan and just made her laugh.

Natalie: Make jokes. Right? Right. Or gossip. We’re driving up. We’re driving up for her to have chemotherapy and radiation on the same day or something bizarre, right? It’s a terrible, terrible disease. Glioblastoma. And we start gossiping about the kids or the other mothers in the school or whatever. Like give her something to think, to take her mind off of this terrible, terrible thing that she’s going through. People want to be invited to the mahjong game. They want to be invited to the book club, even if they can’t come. It’s nice to know that there’s still a full human being who has interests and reads books and wants to talk about politics, or not talk about politics or movies. Like you don’t lose who you are, your essential humanity, your personality. You don’t lose all of that when you get sick. And that’s, that’s the real bummer, right? And that we put that on people. They, they become their disease.

Alison: Yeah.

Natalie: And that’s really not fair. There are a whole person without the disease. And please God, they should someday be without the disease. In my husband’s case, he won’t. This is a disease that he will have for the rest of his life, right? But he’s a whole person with so many other aspects of his personality and things. He’s, he enjoys and like, let’s just the people that we responded to the most positively and who are our closest people are the people who were devastated by this news. And the next day just invited us to dinner. Yeah. And we kept on doing what we’re doing and talking about all the other things and the kids and the house and the life and whatever, because that’s what people who are going through really tough times, any tough time, a divorce, a loss, a disease, they want to still be a person. Yeah.

Alison: That’s right. Yeah.

Jean: That’s such sage advice. Something really great to remember. And, uh, I, I think, uh, one of the other great stories you mentioned, Natalie, is, um, you were sitting next to a woman at a banquet and she shared with you that, that her daughter had passed.

Natalie: Mhm. Yeah.

Jean: And then, you know, you were like, you know, what do you say?

Natalie: Mhm.

Jean: All you did was you just grabbed her arm and yeah, acknowledged – I see you.

Natalie: There’s nothing to say. Her her daughter was actually murdered. Her little girl was shot when a politician was was shot in a mass shooting incident. And she dropped that in my lap when we were in this meeting. And because I said, how are you here? Why are you here? That’s why she’s here. This is her reality. She lives it every single day of her life. She doesn’t need to hear any, not one word from me, because I am. I promise you, I’m not going to come up with anything better than anything anyone else has said to her over these many years since her daughter died. And so what was there for me to say? So I grabbed her arm and squeezed it, and she nodded at me, and I nodded at her. And we went on about our business here, and I just, you know, from one mother to another, right? Like, I just wanted her to know that I, I heard her and I saw her, and I wasn’t going to burden her with words of sort of hollow comfort, because there is truly —ya know when everyone says, there are no words for me to say, there really are no words.

Alison: Yeah.

Natalie: There aren’t. Yeah. When something really horrible happens, sometimes the most honest thing to say is I don’t know what to say because there are no words for this.

Alison: That’s right.

Jean: Yeah.

Alison: Which is which is. I think we feel so much of our day with words. Of course, now, as opposed to just, you know, like, you know, a similar thing happened to me at a class I was taking. And this woman, I just asked a very innocuous question, like, have you even been here for a while? Like something like that. And then she opened up about something and I was just like. And finally I said, well, thank you for sharing and being so vulnerable. Right. Can I, can I, can I give you a hug?

Natalie: Right. Right.

Alison: She said that felt so nice. And, you know, because I couldn’t say, oh, you know, like nothing. There’s nothing. There’s a great.

Jean: There’s a great book for you to read.

Natalie: Right, right, right, right for you.

Natalie: Or, you know, the other thing that happens a lot, and there’s a chapter on this is this comparison thing, right? So Jean, I’m not sure if you’ve had this, but you’ll be in a room and you’ll, you’ll mention that you lost your husband to a particular kind of cancer and someone else like, oh, my uncle had that. It was horrible. Like, okay, I’m pretty sure I know how horrible it was. And I obviously we get this quite a bit. You know, Parkinson’s touches many, many people. And it will typically be, you know, a parent or a grandparent who had this disease. Again, not a perfect comparison because my husband was young onset and he was, you know, almost 50 when he was diagnosed. So like, here we are with young children and we’re living our lives. You know, you’re I’m pretty sure your grandpa, you know, I don’t know that for a fact, but like, you know, to compare an older person and a younger person, to compare anyone, anyone with the, with the same disease. It is not it’s a, it doesn’t it? What it is trying to do again is create connection.

Natalie: I see you, I know what you’re going through. I’m so sorry to hear this. I’ve had a similar experience. You know someone you can say that differently. You can say I’ve had a similar experience. You know, this was what was helpful for us. If you’re curious about this or whatever, like there are ways to approach trying to make a comparison like that, that I think are more gentle and a little easier for someone to, to, to accept rather than like, oh, that’s a terrible disease. Oh my God, my grandfather, that was awful. Right? You know, and again, it’s just we talk because we’re trying to fill the space in the air and we’re trying so desperately to connect and to be seen ourselves. And so if we can all just try and shift our focus back to the person who’s sharing their news to us and think in that moment, like, I’m going to just try and gently subjugate my own need to be the center of attention in this conversation and put it, put the focus back on the person who’s suffering. Um, I think that they would appreciate that.

Alison: And how about even not? Who’s suffering? How about just putting the attention back on the person who’s talking?

Jean: Do you know?

Natalie: Sure.

Alison: So, you know, so what I loved about this, and I hadn’t really seen before, is that you are taking, um, the stance of talking to the people that are talking to the caregiver, right? As opposed to like, we read a lot of books about care, like, The caregiving stance.

Natalie: Yes.

Alison: You know. Yes. Um, do you because you’re actively caregiving now for ten, ten years, do you, do you have any, um, thoughts on any words of wisdom for people that are caregiving right now as opposed to like their their pals?

Natalie: Sure, sure. Well, you know, I like to say care partner, right. So we are, um, you know, we’re, we’re living our lives. And my husband worked for several years after his diagnosis and he, you know, he more recently retired. Um, we have a youngish child. Our youngest is just has just graduated high school. So we’re still, you know, we’re still very much in it and he’s still well and, and, um, you know, so, so that’s, you know, again, trying, trying to, to ward off the pity, like, you know, be with us in this acknowledge that we’re, we’re dealing with this, but, but, you know, understand that we’re still, um, you know, we’re still in this thing together. Um, but yeah, I think that caregiving, there’s so much written about this, um, uh, Bruce Willis wife, Emma Heming Willis, has written a beautiful book about caregiving. Um, and she touches a little bit on some of the themes in my book, which I appreciate, but it doesn’t focus on that in terms of like, here are things that you shouldn’t say to someone who’s going through this, or here are ways that you can be helpful versus, you know, sending a lot of food that no one’s going to eat.

Natalie: Um, I think, um, the bottom line here, we all know this is that caregivers need to take care of themselves. And it’s the, you know, very, very old expression here of putting your own oxygen mask on first. Like, you know, we know that people who are caregivers, um, for a very long time tend to sometimes die before the person they’re caring for. Um, and that’s the studies have shown that in terms of older people, I think because they’re so drained and they are so they have, they have done so much to hold up the world themselves that they are not taking care of themselves. So taking care of oneself, taking the breaks that you can, if you are able to, um, you know, finding other help for the things that you need help for such so that you can take a break. Um, those are, I think these things are critical, you know, more and more of us are going to be caregivers, right? Everyone is most likely going to be a caregiver at some point in their life and probably more than once, right? So caregiving for children while you’re caregiving for your aging parents, and then caregiving for your spouse or your sibling or on and on and on.

Natalie: So, um, and then eventually needing care yourself. And so hopefully caregivers are getting the message that if they don’t take care of themselves, um, everyone’s going to suffer here, they’re going to suffer. And then their person is not going to be cared for. And so by eating right, sleeping, taking breaks, exercising, getting fresh air, right, all the things. And that’s a luxury. I appreciate that there are people who can’t afford to pay someone else to come when they’re taking those breaks. But again, hopefully people have community around them and friends and family who can allow them to, you know, get the rest that they need, get the sunshine that they need, get the time and space just to just to feel human and just to feel supported. Um, but that’s, I think that’s the number one, two, and three thing for caregivers is to remember that they have, they have needs too, and that their health and wellness is, is primary because they’re, they’re, they’re the person that’s taking care of maybe one, maybe more than one person. So they have to, they have to take care of themselves first.

Jean: Yeah, yeah.

Natalie: Self love.

Jean: Yeah. I mean it’s not always easy as you mentioned.

Natalie: No it’s not.

Jean: And, uh, again, just to reiterate what you just said, it’s like hopefully you have a community.

Natalie: Sure.

Jean: And to, and to step out and, and ask for help. It’s so hard for so many of us to ask for help.

Natalie: Mhm.

Jean: Um, but it’s been my experience that people do want to help, so.

Alison:  yeah, I think they do.

Natalie: And they, and you should be specific about that help. I need tomorrow afternoon. I need a couple hours so I can go.

Jean: Get a massage

Natalie:  or go to the doctor or go to the doctor myself and get my mammogram right, or go get my hair cut so that I feel like a human being. Can you come over and just sit for a few hours in whatever situation it is? If it’s a person who’s has Alzheimer’s or a person who’s in treatment for cancer or something, like, there are times when you know someone just has to sit there and be there, right? And or respite care that people can arrange and other things. And, and also, you know, um, Emma Willis actually, I heard her speak recently and, you know, she, she received a lot of negative feedback when she got help for her husband, when she decided to move him into another space on their property so that he could be cared for properly while her young children are in her home. And people were very cruel about that and judgment, judgmental about it. And again, I, I hope this comes back to the themes of my book, which is just give people grace, right? Like people are doing the very best that they can under very, very challenging circumstances, and you hopefully don’t know what it feels like to walk in that person’s shoes. So try to be kind and gracious and not judge when someone is doing the thing that they need to do for themselves, for their person. They’re caring for, for their children, for other members of their family. Like, I just think we all should operate from a position of believing that everyone’s doing the best they can under tough circumstances and kindness.

Alison: What you said is so perfect

Jean: Yeah, so beautiful.

Alison: Be kind.

Natalie: And that comes back to my other work is like, this is all we’ve got, right? Like, be a little kinder than necessary. It doesn’t hurt. It’s free. Yeah. Right. Just be kind.

Alison: And it feels good.

Natalie: Yeah. Right. And assume and understand and assume that everyone you meet,  and it’s like an old expression. But it’s so true. Every person you meet is  dealing with something or burdened with something or is hurting or is grieving. I live in Manhattan. There are millions of people here. I can’t walk down the street without passing someone who is hurting, who is grieving, who has someone sick in their life, who’s lost their job. Right? We don’t know what’s going on for people, right? And so give people a little bit of grace, give them some space, be a little kinder than you need to be, right? It’s going to come back on you and it’s going to come back on you in kindness. If not from that person, then from someone else.

Alison: I believe that I believe that energy. That’s just so beautiful. Natalie, thank you for thank you for this wonderful, like reset. That’s, that’s what I feel it is just to kind of look and think, oh, yeah, I could change that. Just changing one thing, right?

Natalie: One little thing, I hope, I hope that’s what the book can do. Thank you so much.

Alison: We have two quick questions to ask you.

Natalie: Okay.

Alison: Our podcast is inside wink and I was wondering what you think inside wink means.

Natalie: So I think that when someone winks at me, it feels like a little secret connection between us. Because a wink is always between two people. I don’t really see anyone winking at a big crowd. Right? Like you wink between two people. And so it feels like this little moment of spark, of a connection of I see you, I like you, I love you, you’ve got this, we’ve got this together. We have, we know, we know what’s going on here. You and I, we’re together in this. And so I think an inside wink is an even more intimate connection between two people. So it’s really saying, like, I’m here for you. I’ve got you. This is we are connected in this. So that’s, that’s what it kind of feels like it means to me.

Alison: It’s perfect.

Jean: It’s beautiful.

Jean: It’s so in alignment with you and your message, so I love that. Okay. And our final question is, do you prefer cake, pie or ice cream?

Natalie: Very important question. Very important question. I shared with my husband.

Jean: What Caregiver should know.

Natalie: Exactly. I shared with my husband this question and of course he was like, well, of course ice cream. So in our family, he’s a very funny situation with ice cream. My husband loves ice cream. I love ice cream too. So if I had to choose for myself, I would probably also say ice cream. Although I do love a good piece of cake. But my husband and I were walking down the street once, coming home from dinner a few years ago, and a person was walking with an enormous ice cream cone and he he clocks it right. He sees it as we’re walking and he just because we’re just being quiet, the two of us walking down the street and he goes, ice cream, ice cream. Like apropos of nothing, he just like sort of needed to verbalize that the person had a beautiful ice cream cone. So I told my kids this story. And so now literally all the time, we’ll all just go ice cream. Or if we, you know, we pass one of the trucks on the street or pass the ice cream shop, somebody will just go ice cream. So and we got him a sweatshirt one year for Father’s Day that just said ice cream. So in honor of my husband and my own love of ice cream, I will say ice cream.

Alison: That’s great, I love that. And you know what’s so funny? We talk to all these people and they’re writing books like you, scholars, and sometimes they get hung up on the question. Like they’re like, they’re like, well.

Natalie: What kind of pie.

Alison: You know?

Natalie: Is it pie a la mode? Because if it’s pie a la mode, then it’s really two things, right?

Alison: That’s right.

Jean: It’s both.

Alison: People have snuck that in on us. So there you go.

Natalie:  Love that you asked that.

Natalie: Thank you so much.

Jean: Natalie, this has been such a treat. And, uh, many blessings to you, your husband, your family, and lots of joy.

Natalie: Thank you.

Jean:  I know your book is going to really, uh, benefit so many people.

Natalie: And I really appreciate.

Alison: I hope our paths cross again?

Natalie: Yes, I hope so, I hope so. This has been such a joy. Thank you both so much.

Alison: Have a beautiful day.

Natalie: Thank you.

Natalie: You too.

Alison: Bye.

Natalie: Bye bye.

Alison: Oh!  How nice is she, right. And she seems funny and just really, uh, you know, the whole thing about, just be kind. Don’t we hear that a lot?

Jean: It is. It is so true. And it’s. I think it’s sometimes a little challenging to be kind when you’ve got a lot on your plate. And, and it goes both ways. The, the person that is actually going through a situation, the care partner, as she puts it, which I love, and, um, you know, her, as you just said, the whole message is be kind. We all are going through something. Um, that was a great read. I loved it.

Alison: And you don’t have to be. I think the main thing that I got from this, you don’t have to be a savior or it’s not about you.

Jean: It’s not about you.

Alison: Do you know? And so we need to be reminded of that because we’re living in a society where everything is geared to like, what are you doing? You know, everything is about you. And it’s just nice to hear it’s not about you. Right. You could just listen.

Jean: Yeah. How did I sound on the podcast?

Alison: You were excellent.

Jean: Thank you. Allison.

Alison: It’s about you, Jean.

Alison: But she is wonderful. Natalie. Thank you so, so much.

Jean: That was a real treat.

Alison: Yeah. And we hope that, um, everyone out there is treating everyone with kindness and love and, like, giving each other some grace, right?

Jean: Exactly.

Alison: That’s what I’m going to do today.

Jean: Finally.

Alison: Yeah. I’ve learned something after all this time. Okay. Bye.