Real Talk with Tina and Ann
Tina and Ann met as journalists covering a capital murder trial, 15 years ago. Tina has been a tv and radio personality and has three children. Ann has a master's in counseling and has worked in the jail system, was a director of a battered woman's shelter/rape crisis center, worked as an assistant director at a school for children with autism, worked with abused kids and is currently raising her three children who have autism. She also is autistic and was told would not graduate high school, but as you can see, she has accomplished so much more. The duo share their stories of overcoming and interview people who are making it, despite what has happened. This is more than just two moms sharing their lives. This is two women who have overcome some of life's hardest obstacles. Join us every Wednesday as we go through life's journey together. There is purpose in the pain and hope in the journey.
Real Talk with Tina and Ann
When Love Changes Form: Staying Connected After Loss with Tony Stewart
What happens when love continues beyond goodbye? Tony Stewart's journey with his wife Lynn reveals a profound truth many of us fear facing: grief's deepest waters can hold unexpected beauty.
Tony's memoir "Carrying the Tiger" chronicles their 30-year love story that evolved through creative pursuits, global adventures across India and Southeast Asia, and ultimately, Lynn's battle with cancer. The title—inspired by a Tai Chi movement where one lifts a tiger onto a distant hilltop to make it less threatening—perfectly captures their approach to life's most difficult challenges.
When Lynn received her diagnosis, Tony began documenting their experience on CaringBridge. What started as medical updates for friends transformed into reflections on mortality, connection, and finding light in darkness. These writings eventually became the framework for his memoir, but only after Tony had navigated the unpredictable terrain of grief that followed Lynn's passing.
Throughout our conversation, Tony's vulnerability shines as he shares revelations that challenge conventional wisdom about loss. "The first few months, I kept expecting steady progress upward," he admits. "What surprised me most was how nonlinear grief is—how it sneaks up just when you think you're getting better." This honesty offers comfort to anyone who's felt bewildered by grief's unpredictable nature.
Most powerfully, Tony describes the weeks he spent caring for Lynn during hospice as "the most beautiful of my life"—a perspective that transforms our understanding of caregiving and end-of-life experiences. Where many see only loss, Tony discovered profound connection, demonstrating that love doesn't diminish as physical abilities fade.
Now a certified grief educator, Tony shares wisdom that resonates whether you're grieving or supporting someone who is: "You can't heal what you don't feel." His story proves that embracing grief rather than avoiding it ultimately leads to healing, though not on society's timeline or terms.
For anyone navigating loss or seeking to understand its landscape, Tony's journey illuminates an essential truth: grief isn't where love ends—it's where love finds a new way to speak.
Welcome to Real Talk with Tina and Anne. I am Anne and today we have Tony Stewart, author of Carrying the Tiger. Living with Cancer, dying with Grace, finding Joy While Grieving. This isn't just a memoir. It's a love letter and tribute to his late wife Lynn, who passed away after a courageous battle with cancer. Through this deeply personal book, tony invites the reader into the sacred space of grief, devotion and the quiet moments of beauty that remain even in the shadow of loss. It's not just a story of saying goodbye. It's a story of continuing to love even after they are no longer physically with us.
Speaker 1:But Tony's life hasn't only been shaped by loss. It's been marked by innovation, creativity and a pursuit of meaning. He's made award-winning films for colleges and universities, written software that earned glowing reviews and developed a grants management application used by three of the five largest charities in the world. And in the complex world of advertising, he helped lead the creation of an international messaging standard used across the globe. I mean that's really impressive. I mean that's really impressive. With carrying the tiger, he proves that sometimes the most powerful thing we can build is a bridge between love and legacy. Tony, I have to tell you this one was very personal to me. Loss and grief has deeply shaped my life, having lost my father when I was 11, and I've had many losses since then. I love that this is a book that proves that even the hard can be done with beauty and that we can continue to love and, even though it might be a physically hard goodbye, it is a transition into a different relationship with them. So thank you for that, thank you for being here.
Speaker 2:You are really welcome and thank you for that beautiful summary of the book. You've just basically laid out in a few paragraphs all the reasons I wrote the book, or most of them, and I'm just so glad that it worked for you that way.
Speaker 1:It has. I mean, the story was hard for me. I'm not going to, you know, try to sugarcoat that only because it took me to a really hard place, but I think honestly that only because it took me to a really hard place, but I think honestly it's needed. I think this is something that we need to read for those of us who have really gone through some hard losses. But, you know, you honor every part of the journey and that's what's so beautiful about it. All of it deserved space. The worst of times, and sometimes even the harder of times, with joy and love woven throughout the entire thing. You show how to love another human with your entire heart. So please tell us about your wife.
Speaker 2:Lynn, wow, lynn Cotulla, a painter, an artist. I met her in 1985, a kind of a meet, cute story in a swimming pool, ok, and I was on the rebound from a first marriage and I was sort of chasing after every woman who crossed my path. Chasing after every woman who crossed my path that's overstating it. But chatting up, I'm an introvert and this had brought out this. I was 29 at the time and I really wanted to prove that I was still attractive. And I met this woman in a swimming pool and said a few words to her, not much different than I had said to a million other people.
Speaker 2:I didn't actually have her in mind specially and she, who was then 39, thought, oh my gosh, this guy is after me, this guy has fallen. I mean, he spotted me and he's talked to me. No one talks to each other in the swimming pool. She's wearing her cap, her goggles. So the next day she stopped at the end of the lane and did some leg stretches and I thought, oh, this, this nice woman is there, I'll just chat with her some more. And only later did we realize that it was this wonderful cross misunderstanding where she thought that I was already hugely attracted to her and I thought this was just a coincidence. But because she believed I was attracted to her, she made herself available to me and we started talking and we were together for oh gosh 30 years after that she sounds like a beautiful human.
Speaker 2:She's a wonderful person and I slip into the present tense, even though she died more than four years ago, because for me she's very much alive in my heart. She painted paintings that were out of fashion for 30 or 40, for all that time mainly still lives. She became really well known for it still lives where you put some objects on a tabletop and you paint them. It was something that was done like in the 17th, 18th, 19th centuries, but through her life these paintings were out of fashion. She was very good at it. She got a gallery, she had shows, she sold paintings, but she was never going to be rich or famous from that. But that was her passion. She lived to make these paintings, had a partial day job at a law firm where she worked with all of these hugely talented, creative people, I should say in the support staff you know as the paralegals, the proof readers and she had this circle of friends who were like her, over talented, over educated, making a few dollars, working in this law firm and doing whatever they did in the rest of their lives working in this law firm and doing whatever they did in the rest of their lives and she brought all of this creativity to me, which I just loved. It was funny, vivacious, told some wicked jokes. I put a few of them in the book give you a sense of who she is.
Speaker 2:And, as you said, in the first few years she was around 40 years old. I was around 30. We tried to have children. That didn't work for us and we decided to redirect that energy and, honestly, money that we would have spent. You know that one does spend raising children on travel and on doing things that we would never have been able to do if we had been raising a family as sort of the alternative life. And we spent all those years going on these wonderful trips and we just love to go off by ourselves I mean it wasn't with groups to places like India and Southeast Asia and sort of figure out this before the Internet, figure out where we could go, where we could stay and have all these adventures for a few weeks every year.
Speaker 1:Could you talk about those travels and what they were like? Sure, yeah. Could you talk about some of those travels?
Speaker 2:The one that comes immediately to mind is there are two or three that come immediately to mind, and perhaps it's because these are ones that I actually put these anecdotes in the book and maybe something else will come to me. But the very first trip that we ever took to India, she wanted to see this sort of painted palace, which was a 15th century building that the Maharana of that area, that's a regional prince, and his family had. That was said to be covered with I'll call them frescoes paintings on the inside of the walls, and the only way you could see it was to go to this little regional town and stay in a hotel that was run by that family. That was their converted palace, but after India's independence they no longer had a palace and in order to try and make some money, we could go stay there. And this was right around 9-11 that we did this and tourism had collapsed. So we stayed in this palace where we were the only guests in this giant thing and we had put up $100. This, for that, was a hundred feet long and then the bedroom off to one side. It was literally like the Maharana's room, and Lynn looked at that and said I can't sleep here, this is too big, and they said but you paid for it. And she said show me something smaller.
Speaker 2:We worked our way down to something more intimate and then set out the next day for this palace, which was, which had no electricity, no running water. It was built, you know, 600 years ago, but there was a caretaker who let us in. He spoke no English. We walked up to the top of this thing, five flights up, and he opened the shutters and the daylight came streaming in and it was covered with the most amazing paintings. So we walked downstairs through that admiring this artwork, taking some pictures of ourselves in there, and then we thought you know, I don't want to get back in the car. We had a car and a driver which, I should say, is not like having one here. I mean, it's the only way to get around in India. It's very inexpensive, it's not only rich people who do it. So we had a car and a driver and we told him to meet us at the bottom of this long hill.
Speaker 2:This castle building was at the top of a hill that wound down to the center of town, and we went walking down that hill and after a while we were standing in front of a hardware store and the shopkeeper came out and he hardly spoke any English but he was really excited. People were staring at us as we went down this thing because this was regional India. There weren't any tourists there. Who are these white foreigners walking down the street? Where did they come from? And he said please come with me.
Speaker 2:I want you to meet my parents to this little house where his parents were, who were more our age, and they were totally surprised to see us. He left us alone with them. They didn't speak English. We spent 20 minutes with his parents while they took like family photos off the wall At least I assume that's what they were and pointed to us. They served us tea, we did some little chatting where none of us could understand what we were saying in pidgin English and pidgin whatever, and then, we thanked them and we went on our way, and that was our introduction to India.
Speaker 2:And perhaps encapsulated in all of the aspects of that story is how we ended up going back seven more times.
Speaker 1:Wow, that's amazing. You know, when we want to experience life and I love to travel too I want to take my favorite people with me you know, because I want to say look at this and look at this. I mean you're taking in the world around you with your favorite people.
Speaker 2:Yes.
Speaker 1:And so that's just such a beautiful thing that you got to do that with her.
Speaker 2:Yes, again and again I had these various cool sort of jobs A lot of them were self-employed, consulting sorts of things so I could take three or four weeks we did this in the winter here and we would fly far, far away. I also was very lucky because I had jobs where I was earning massive numbers of frequent flyer miles. Frequent flyer miles. We said, ah, we got to go to the other side of the world because we can go business class and stretch out on all these flyer miles that we wouldn't otherwise have been able to afford. So that's how we started going places like on the other side of the world.
Speaker 1:I want to talk about the title Carrying the. Tiger, because it's really vivid and so is the picture on the cover. What does the tiger represent to you and what does the title mean?
Speaker 2:So that title was given to us, although I didn't have any idea it was going to become the title in an email that a friend of Lynn's wrote about a month after we discovered that she had cancer and she was very open with her friends about it. And so we were communicating and started writing about it. And a friend wrote in my Tai Chi group we carry a tiger for a friend who is facing difficulties. The three motions of bending low, lifting up the tiger and putting it on a hilltop far away make that tiger so much less threatening. Lynn wrote back to her friend and said that's beautiful. I'd love for you to carry a tiger for me and also could you teach me how to carry tigers.
Speaker 1:That really is beautiful.
Speaker 2:And so much so that it became your title of your memoir that represented both of you cancer and then learning how to die with grace and give Lynn a good, beautiful death. Together we cooperated on that, and then me afterwards trying to find joy while deeply grieving those I think of as these three huge challenges. Each is a different section of the book and in each case it's a different tiger to learn to carry.
Speaker 1:For anyone that's ever followed a loved one story on CaringBridge and I have you know just how powerful it is to stay connected through every high, low and in-between moment of a person's medical journey and their life and everything else. But, tony, for our listeners who may not be familiar, can you talk a little bit about CaringBridge and why you decided to start writing Lynn's and yours story on the website?
Speaker 2:Yes. So Lynn had a lot of friends, very vivacious person who stayed in touch with people, and the day that we learned that she had tumors, before we even had a formal diagnosis, she started emailing some of her close friends to say, oh my God what horrible news.
Speaker 2:And then they emailed back and then the word spread and then more emails were coming in and this was all during this crazy first week. I call that chapter into the whirlwind because that's what it feels like, and I think that's true of anyone who receives a sudden, unexpected, horrible diagnosis. It's like what the hell are we going to do with this? How are we going to deal with this? So we're running around trying to find the right doctors and being referred from one to another and dealing with all these emails.
Speaker 2:And someone said I think Lynn must have started complaining to her friends like this is killing me. Bad enough to have the cancer, but communicating like this is killing me. And someone told her about CaringBridge, which is a nonprofit organization it's donation funded, it's free to use where you can set up a small social media site, sort of a very, very much like a stripped down Facebook, where you post things and people can write comments and you can lock it down. You can. You can be public, but you can also make it private. And we chose to have a private site.
Speaker 2:But we started telling our friends go here, We'll whitelist you, We'll, we'll, we'll do the security thing so you can get in and you'll read what Lynn wrote there, and it actually wasn't Lynn who wrote them. Lynn was a very good writer and, as I said, was very happy to talk to her friends, but she quickly said life even as this sword was hanging over her. But I was very comfortable sitting down and writing a post like this is what happened today. And they started out those early months as one post after another. This is what happened today. Eventually that became the book Carrying the Tiger, but the book is rather different from those posts and has a lot more in it.
Speaker 1:At what point did you realize that your writing wasn't just updates, that this was becoming a book that people would be touched by and they would be changed when they read it?
Speaker 2:It was probably several years later. Lynn had incurable cancer, but we were lucky enough in those first weeks to get hooked up to a miracle drug. An immunotherapy that doesn't work for everybody did work for Lynn, did not make the cancer go away, but held it down for years. So instead of dying in a year or two, we had this experience of learning to live with cancer and then dealing with the side effects. That went on for five or six years before things turned bad again.
Speaker 2:During that time, I started out writing these factual posts and then, just almost without thinking about it maybe because I was writing so much of them started letting more of the, of talking more about. What does it mean to live with cancer? What does it feel like to us? So things that weren't purely the factual, all bad news, but it wasn't hard news, it was just this feels like a slog. We feel like we're in a swamp and we don't understand. We don't know when this is going to end and how long this will go on, and it's just really hard every day. And I almost didn't publish the post. I wrote the thing and I hovered over the little publish button and I published it, but I was afraid of. I was afraid of alienating our friends, and instead I got these responses back. Tony, thank you so much for sharing what's really going on.
Speaker 2:Right, yes, I think this could be a book.
Speaker 1:You also became a certified grief educator. So where did you make that transition from working so hard on yourself and helping yourself go through your own grief to wanting to help others with theirs?
Speaker 2:This is a very recent event in my life. I wrote the whole book and and I took this was just last year. Lynn died four years ago. It took several years before I got to the point of being able to create Carrying the Tiger, which, as I said, is much more of a real book than than just the posts. And then I started on the OK, I've got this book. Some of my friends who read early versions of it said wow of it, said wow. And, to my surprise, some strangers in the beta reading phase, where people you don't know read a manuscript said this really helped me. This helped me get through the loss of my brother and his wife. Oh my God, this woman just lost her brother and his wife.
Speaker 2:So I started having the feeling like I've got something here that could be really much more meaningful than I imagined, when I originally thought, oh, I'll publish this thing and, you know, sell a few hundred copies and that'll be that. And I started to think, no, I think I'm going to try and make this more widely available and hired a publicist and started going on podcasts and things like this one to try and spread the word, things like this one to try and spread the word. So after I'd recorded maybe four or five conversations with people asking me about the book, I began to realize these conversations where I feel like there are people listening who might be helped, whether they ever read my book or not, who might be helped by hearing about my story. It was making me feel great. It was making me feel like I was doing something good in the world.
Speaker 2:And then, by coincidence, I just saw an Instagram ad by David Kessler, who is one of the most well-known people in the grief counseling space. He runs griefcom and is a counselor, and he was starting a training the next week. Wow, a training the next week Wow. And I'm not religious, but I mean I felt like Lynn was making this happen, or you know, this was a sign like here, I was starting to feel like talking about grief and helping other people was really meaningful and I could take this course and find out. So that was just a few months ago. I only finished the course a few weeks ago.
Speaker 1:Oh my goodness. Well, I can tell you that you were doing this even before you knew you were doing this. You know the grief educating part of it and I want to share that. You know, helping others has always helped me and when I was going through one of the hardest times in my life, someone said to me go help someone else. And it was the best advice that I could have been given during that time and I actually prefer helping other people. You know, I mean, but I was wondering if becoming a grief educator has helped you go through the process even more.
Speaker 2:I think writing the book helped me immensely. I think the CaringBridge posts which became the origin of the book, writing them in real time while I was grieving, writing them in real time during hospice, day after day those posts were my therapy at the time and that was huge. Then the process of transforming them into a book which caused me me. At this point it had been three years since Lynn died. By the time I was ready and started making the book. I tried earlier and I just wasn't ready. I was crying too much.
Speaker 2:I couldn't possibly make this book no-transcript breakdown, because the caring really got to me and I collapsed. That wasn't in any post, but it's so important to the story and I wanted to tell the reality. So for a year I worked on the book and I would say the first half of that year was therapy all over again, I bet, Reliving all of these things. Yeah, that was a year and a half ago. It then calmed down for a while. I started focusing on how do I you know which sentence is better than which other, and all this sort of craft work you have to do to make it not just a book but a really good book that people will actually want to keep turning the pages. And then I recorded the audio book and it all came back again.
Speaker 1:See, that's a different. You're using a different part of you when you're actually saying it out loud yes, and also not second guessing it, because by the time I recorded the audio book, the text was locked.
Speaker 2:I was no longer being my own editor and saying, oh, in my apartment and Lynn died across the hall from here, and many of the whatever events in the book take place in my apartment. I'm sitting there now. Oh, my gosh, it was. That was huge. And that was just earlier this year. All of that had happened and I would say that by the time I took the grief class, I learned a lot. I learned a lot of things that I would not never have known about helping people and about different kinds of grief, but the biggest thing I learned was that it reinforced all of what I had done out of instinct to try and find my way through, and it reinforced me the value of the feedback I had gotten. I just thought, wow, I I. By by luck uh, by lots of layers of luck I did all kinds of things that I would say are quote right that helped me get through my grief, and they're the techniques that the class was teaching you to apply and help other people.
Speaker 1:You touched on something you know. I have to ask. You went from writing software to making films, to helping shape ad buying standards, and then you wrote this one of a kind grief book. You seem to be talented in writing what you know. And when you were done with this. I have to ask did you have any idea that all of that was in there, that you could write something so honest and vulnerable and raw?
Speaker 2:I knew I had written something open and real and good. The level of response that this book has gotten has been a wonderful surprise.
Speaker 1:Yeah, it's because of how intimate, how real, like you said, and it's really brave, I think, especially for a man to put everything out there on the page for other people to see that you really do feel men, do feel men feel deeply, really do feel men, do feel men feel deeply. And it's hard, I think, for anybody to really put it out there on the page for other people to read. I mean, we might be able to write in our diary, you know, and read something later and revisit that, but to allow other people to see it, I mean this is a very brave book, thank you, thank you.
Speaker 2:I of course I didn't know I was being that brave at the time, but luckily, if you think about it, you know.
Speaker 2:Carrying the Tiger began as these private posts and I was writing for an intimate group of friends that kept expanding. By the time Lynn died there were 200 people reading the posts and many of them I didn't know they were friends of friends of hers or people she had worked with and such, who wanted to know what was going on. But I was writing in a very safe place and this whole process that I talked about, where I started out factual and just kept getting more open and then getting the feedback from people saying keep going, was immensely satisfying to me. But it brought me to a place where I was putting things down on paper that I have never, ever, done anything like that before and that just kept going to us and not just someone but other kinds of losses to see if we can make some fine meaning, make something meaningful out of it which makes us feel good and helps to transform this horrible source of grief into a happier source of grief, a warmer source of grief.
Speaker 2:So, I didn't know that concept, that phrase, but it's clearly what I spent several years doing. So you asked me quite a bit earlier in this conversation when did I first think of making this a book? And I don't think I answered. I told the whole preamble but the actual when did I first think that I'm going to make this a book?
Speaker 2:About two weeks after Lynn died I was writing these posts. I had thought I would stop when she died. I actually wrote a post saying this will be the last one. It's the Lynn Cotulla CaringBridge Journal and she died and I can't very well go on writing Lynn Cotulla posts. I'd never pretended it was her, it was always my name on them.
Speaker 2:But then, a few days after she died, I wrote another post because I could not stop, because I had become addicted to the process of writing them and I started getting these responses back about my grief posts in which I was really just describing day by day what it was like to go through that horrible, shattering early grief. And I was doing it because I was addicted to the process of putting this stuff down on paper and it was helping me understand what I was feeling. But I was feeling, but I was creating this treasure trove of material, my friends started saying, wow, this is great, tony, you're helping me so much by saying this that, a week or two in, I will now say I realized I could make real meaning out of Lynn's life if I took all of these posts and turned them into a book that other people will read. And that was the first time I had that idea, and it was specifically because Lynn had just died.
Speaker 1:This is one of the most intimate books out there on grief and I do think it was the willingness for you to go there and I think so many times people write about facts, you know, they just put those things out there that are more in your head instead of your heart and the how to's. But this was just written from honesty and heart. What do you think of the stages of grief?
Speaker 2:Oh, do you mean the so-called famous five or six stages? There are the five stages that this guy, david Kessler, and Elizabeth Kubler-Ross did, and then later he added a sixth called finding meaning. I think that they are all real descriptions of things that you may go through, not all of, not necessarily in that order, necessarily all of them, because and I think David Kessler himself would tell you that, because I've taken his course and heard him say that to us it is not like first you will feel anger, then denial or then whatever. No, it does not work that way. But these are all phases that you might go through that are very, very common. It's sort of a handle you can put on how you're feeling at this moment in your own personal grief journey, and sometimes it's really helpful to be able to look at how you're feeling and say I'm not alone here. Millions of other people have been angry. It's very common to be extremely angry about all kinds of things.
Speaker 2:Right to be extremely angry about all kinds of things you know, or to deny it. Well, denial, of course. There is this. I wrote about it as magical thinking and I picked up that phrase from Joan Didion's memoir about her grief journey, the Year of Magical Thinking, which in her book she defined as the irrational belief that the person you've lost is going to come back. When she realized she was hanging on to his clothes which I think is very common I.
Speaker 2:But that stage in which you hang on to them, it's some part of your brain. It certainly was for me and for Joan Didion. It's because, oh, lynn will need these when she comes back. I can't get rid of her clothes because then what will she wear when she comes back? Of course you're not consciously thinking that thought, but emotionally. That's a large part of why you can't get rid of them, or why I shouldn't generalize. That was a large part of why I couldn't get rid of them at first. Eventually I gave a lot of her things to friends and to charity and I still have some here four years later.
Speaker 1:I think for me and I have had so many people in my life pass away and I still have some of their things you know I have had to, of course, let most of it go, but I just can't let go of a memory Like when my aunt passed away, who was the absolute closest aunt, she was just a beautiful soul. I was allowed to go into her apartment and take the things that meant the most to me. And you know some people they want the most expensive item or whatever you know, and it becomes some greed thing. Kept her halls in because she would always share them with me when I would come. I wanted the bird music box that I had given her that we would listen to together and really that was all that I wanted, because those were the things that I'll never forget.
Speaker 1:And when I still look at them today, you know they're that memory and I'll keep them forever. But you know some of the things, like my mom's clothes, I still have in a bin in my shed. You know I don't have them in the house but I can go look at them, I can go hold them. You know that kind of stuff and it's hard to let go of them. It really is. I probably have too many things. I probably should let go of them.
Speaker 2:Don't should yourself, don't should yourself ever. Yeah, I think when I'm ready I will. And during that time I had reached a stage I know because it's in the book where I've gotten. I've given away some of Lynn's things to charity her clothes and all and I've kept some of my favorite ones and they're hanging in the closet and, as I say whenever I want to visit them, there they are.
Speaker 2:Now it is two and a half years later now, as we record this, than the ending of the story in the book and I recently was looking in that closet and realized oh, somewhere in the last two years I gave most of those things away because they're no longer there, and I had just maybe recorded where it was wrong.
Speaker 2:It was like these were beautiful things she had bought in India. The ones I had kept were mainly like Indian blouses and all that we had bought during our travels, so they had double meaning. But they're really beautiful and useful and not that easy to get. So at some point I had said no, I can't hang on to these, I need to give them away. But that moment honestly has not stuck in my head. It's sort of like well, wait a minute, they were there two years ago and now they're not there and I just reached a point where it made more sense to me to move them on and give them another life somewhere else with Lynn and her health and the struggles that you two encountered with the health care system.
Speaker 1:Yes, do you want to talk about that a little bit?
Speaker 2:One of the lessons that we learned is that you really do have to advocate for yourself. You have to do a lot of your own research, and most well-meaning doctors in the world are living within the system that they are in Right. And the story I tell early on in the book is how is this twists and turns of how we came to learn about a clinical trial that might be right for Lynn. And it was in the course of our getting a second opinion from a doctor who was a friend of a friend that I happen to know at Yale New Haven Hospital. I live in New York City. Yale New Haven Hospital is two hours travel from here, minimum, so it wasn't someplace we expected to get treatment. But we went up there for the second opinion and he says I have great news for you. We're running a clinical trial here of this new immunotherapy drug that we think would be perfect for Lynn Love to log you into. You know, get you into this trial and you could start now, tomorrow, the day after. And then we learned that it was going to be fiendishly difficult Go there. The clinical trial required that we more or less camp out in New Haven for weeks, three days a week here, three days a week there, which our lives. I had a full-time job, we don't. You know it's stressful, et cetera. Would it be possible to do this in New York City, where we are surrounded by world famous hospitals? And they basically said probably, but you're on your own to figure that we can't help you. I'm simplifying tremendously, but that was my first taste of like. Wait a minute.
Speaker 2:I ended up sitting there in New Haven Googling on my phone or actually it was on a computer that they loaned me Googling to discover that the same exact study was being done at Sloan Kettering Famous Cancer Hospital here in Manhattan, where I could get there by subway, and then they wouldn't be able to. I said can you connect me to the right people there? And they said we wouldn't know who to call. So Lynn and I spent this whole afternoon sitting in New Haven figuring out and calling into Sloan Kettering and her other doctors to try and get her into this thing in New York. This was nuts and these are all well-meaning and some, in one case, world-famous doctors who I really liked. But there was something about the nature of the system they're all working in where they said you're on your own because this sort of spans between their institutions, and that was horrible. There are lots of stories in the book of situations where, even at Sloan Kettering, which I love, we're working with people I loved.
Speaker 2:They wanted to do things because of the nature of the systems that they thought were in Lynn's best interest. That turned out, in my opinion, totally not to be so. The second or third time we were back for a similar major operation and they were proposing the same sorts of things again. I ended up like yelling one day and saying, basically we're going to sign Lynn out against medical advice, which is a defined term. We're going to sign Lynn out, ama, rather than do what you're saying she's got.
Speaker 2:She's got deadly cancer. She could die tomorrow. I'm not going to worry about this little thing you want to protect against Her. Staying here is killing her and they didn't see it. She was getting hospital delirium. Things were going wrong for her. It was a hell of a journey and so, again and again, we had to learn the systems, understand the people and advocate for Lynn. And that is a lot of what I did, and it was this wonderful pairing because that was like my type A project management personality. I could bring that to bear and she was much more of the artist and the emotional person and very smart, but it really played to my strength to figure this stuff out and advocate for her.
Speaker 1:She was very fortunate to have you and that you had that fight and I think that you know I had to do that for my mom when she was in hospice and different things, and I often say to the doctors what would you do if this was your mom? What would you do if this was your wife or husband or child?
Speaker 2:And they do this every day. This is what they do, and I think that they lose that sometimes where and I don't want them to I don't want to say that they just saw my mom as a number, you know, or just another patient, but they are just another patient in some regards and you want them to look at them as if it's their mom in that bed. What would you do? So, yeah, her third major spinal operation. We're ready for her to go home. She's starting to get hospital delirium again, and that's a whole thing in the book that I never used to know anything about and it's fascinating and horrifying. And they wanted to keep her another day to check her heart and then they wanted to keep her a second other day and that's when I just lost it. I mean, you know, it turned out she died two months later from her cancer and what she was most scared about was losing her mind to delirium by staying in the hospital any longer. And what they're looking at is what if we release her one day too early and she goes home and has a heart attack? And I don't know, are they worried about litigation and me suing them for malpractice, whatever? And I'm just trying to get her the heck out of there.
Speaker 2:These were good people. They're doing their jobs, but what they think is their job is not what I thought we needed, right, yeah, and it's about through the living with cancer, part of the story our doctors repeated again and again. It's not about extending Lynn's life, it's about having quality life for as long as you can, and I think that's a sea change among good oncologists and good doctors from 20, 30 years ago, everything was measured on how can we get you home and in a condition where you can enjoy the life you have? Right, the measure of what it means to enjoy the life you have changes. It's. Certainly we couldn't go traveling to India or anything like that. We weren't going to get that life back based on what happened to Lynn during those years, but we learned to enjoy what we had.
Speaker 2:And the doctors were very much on our side and very sympathetic and never saying we just want to do this one more thing. You know, maybe it'll get you six more months. Well, we didn't want six more months if Lynn was going to be in pain and unable to enjoy her life for those six months, and they weren't pushing that on us.
Speaker 1:Yeah, I want to move on to you, and there's something deeply human in the way that you described the space after Lynn's passing not just the grief but the rebuilding. So can you talk about this time of your life and what surprised you the most about you and your grief?
Speaker 2:Wow, that's a great question, and I don't think anyone's asked me that question before. The thing that surprised me most in, certainly in the first month or two, was I was looking for a steady progression upwards. I understood that I didn't know when it would happen. But when I look at the what I wrote day after day, day every time, I start to feel a little better. In those first weeks I write, hey, I'm feeling a little better, you know, maybe the sun is starting to come out, and then I would get plunged back a day or two later into deep, horrible, sobbing grief, sobbing grief. And so the thing that surprised me most which I now know is completely common and happens to virtually everyone, is that it was so nonlinear, so sneaky. I used the word sneaky at one point, not in the book, but I remember in writing about it.
Speaker 2:Somewhere I said grief is sneaky because, it leads you to think you're getting to a good place and then it comes roaring back, something sets you off and looking back and realizing that I was only a few months into my grief journey and most people, all of us, you know that first year, or even two years, is really intense for a lot of us. The idea that I thought that I was going to start feeling consistently better in a month or two is just. It's the same fallacy that our society lives with, and I had bought into it. If I can just do everything right and I was I was writing these CaringBridge posts and people were telling me what had worked for them, but I think they meant over a period of years. I was trying to do things in one, two, three months in like.
Speaker 2:Let me train myself to look at the photos of me and Lynn together and remember the happy moment instead of just sobbing, because you know, in those first months, you or at least I, you look at photos of us in India or something on a happy day and all I could do was sob at how I'd lost that and we were never going to be there again, et cetera. And in reality, over time, this is exactly the transformation that you hope for and that has happened to me and happens to most people is that you eventually reach the point where you at least can smile and remember the happy part without always bursting into tears. But I somehow thought that by doing these sorts of exercises looking at the photos, trying to smile, thinking about grief that in a period of one, two, three, four months I was going to lift myself up to a better level, and instead it just kept surprising me, plunging me back down. So that's the first thing that comes to mind when you say what did you learn? Well, I learned that that stuff is really tricky.
Speaker 1:If it's giving yourself permission to go on the wave, to go in whichever direction the wave takes you that my instinct was to go on the wave.
Speaker 2:So, even though I wanted and hoped, and I continually foolishly believed that when the wave was lifting me up, maybe it will keep lifting me up, you know, one would like to believe that tomorrow will be another good day, I was willing from the beginning to experience the grief as it rocked and rolled me. There's a phrase I learned in the Kessler course you can't heal what you don't feel, and a lot of us. It's a wonderful phrase. It's a wonderful. You can't heal what you don't feel. And those of us who try and just push the grief away. Of course the phrase is true of many other kinds of emotions, but you try and push the grief away. Of course the phrase is true of many other kinds of emotions, but you try and push the grief away. It's really still there, it's not healed and it will come back to bite you at some unexpected time, possibly much later in your life.
Speaker 2:And I, in taking the course, realized, oh gosh, I let myself feel from day one. That's how we have that part of the book. That's what I'm writing about is is all these feelings I was having, and I think, possibly because I was getting so much satisfaction from sharing how I woke in tears. They came from nowhere, you know. Today, this morning, whatever, sharing just things and getting the positive reinforcement from friends and readers. Keep going, keep going. Somehow I walked myself right into the midst of the feelings early on and that was a blessing.
Speaker 1:I think that, listening to you and your book and everything that you've done in the Caring Bridge and I mean you did this a very healthy way. You didn't put up that wall. You allowed it to consume you at times and I think sometimes that's the part that everybody wants to run away from. It's like wait a second. I'm feeling nope, wall go up. Okay, I'm going to go do something to block that pain, but you allowed it to come in. I think that that's a really beautiful message.
Speaker 2:Thank you. It is what worked for me as a person trying to get through that phase and it is also what I most wanted to share in that part of the story that I hope that in reading the book, in reading Carrying the Tiger, you see that playing out in all the parts of the book reality of what was actually happening and we didn't try and sugarcoat it or push it away. Very true of the hospice section and helping Lynn Dott and that doing that brought great gifts.
Speaker 1:What I'm also taking from this is that this space, I think, would be harder for men. You know, women go straight to tears lots of times, times and it's okay, but I think that it is harder for men. What do you hope men learn from your vulnerability?
Speaker 2:I think men I really hope that men hearing about this story or reading this story learn exactly what we're talking about. That letting yourself be open, revealing these thoughts that you're having that you don't dare reveal because they make you feel bad about yourself, actually helps. It doesn't just help emotionally. Sometimes it helps like letting this out gets other people, whoever you're talking to, to say something really useful, really helpful. There are examples of that all through the book. It kept happening to me when I wrote the book.
Speaker 2:I wasn't actually thinking about the gender issue, although there is one spot in it where when Lynn was dying in hospice and she was here with me at home, and it was during COVID, and she was here with me at home and it was during COVID we we did have AIDS, um, but it was during COVID. There were hardly any visitors, um, and I was. You know it was. It was hard. I was taking care of her as one takes care of a baby. As we got to the end, you know, wiping her, cleaning her, all of all, all the bodily functions, feeding her, all of that, her all the bodily functions, feeding her, all of that.
Speaker 2:And then I did hire some aides to help health aides in the last period because it was just going to kill me. It was more than I could do by myself. And one of the aides told me that when she does hospice duty she's been in a lot of different houses and often I think she may have said almost always the husband sits in another room and can't bring himself to go in to be with his wife because she's not the woman, the vibrant, healthy woman that he spent his life with and he doesn't do the things that I was doing. And she told me I was really unusual in her experience and when you read that section of the book I hope that you'll realize that that those were the two most beautiful weeks of my life and that taking care of lynn and bathing her and talking to her about dying and sharing the feelings she was having, those were the most miraculous special days of my whole life.
Speaker 1:Well, I'm tearing up. You know. That is just proof that there is so much beauty in our deepest pains. There really is. I mean, in the midst of all of this you did seem to find joy and stay in the joy when you were really hurting deeply at the same time. So could you talk more about that? How did you find the joy in the midst of all the pain?
Speaker 2:I think that there's a Buddhist saying that you shouldn't chase happiness. Happiness is chasing you. You just have to stop running and let it catch you. And I've heard other Buddhist type people, and I should say I'm not a deep Buddhist, Buddhist type people, and I should say I'm not a deep Buddhist, but I really of all the religions. There are things in Buddhism that I relate to more than any of the others, and that's one of them. And I think that what Lynn and I had from the very beginning was a willingness and an ability to just stop and look around and say, yeah, this is all horrible, but, oh my God, these buds on these trees look beautiful. Oh my gosh, the air is nice today.
Speaker 2:Oh my gosh, you know, and just to let yourself stop. There is no magic. Here's what you do to get joy. To get joy, it's here's what you do to stop for a minute and realize that if you just open yourself up the things to appreciate and admire. I mean, we frequently said we still have each other, we still have each other, we can't do this, we can't do that, we can't do the other, but we still have each other. We said that to each other many times and it was still true. I wrote it isn't. The person they were before is never. You're never going to have back what you had. Then you're into loss, you're possibly into avoidance. But if you just say all of that is true, but let me just stop for a minute and hold her hand and realize what I've got, that use that as a metaphor, because that was certainly true at that moment and it was true many times. But versions of that are what kept me going.
Speaker 1:You said so much in all of that. I think that so many times and you know, not everybody has the ability to do what you're talking about I don't know why Some people really do just hold on to that negative and that's what they do and no matter what. They just can't make that shift and I'm not sure what it is why some people can and some people can't. But what I love is that you had a mix. You felt this and you felt that and you allowed both, and sometimes you allowed them at the exact same time yes and not all of it was all bad, and not you.
Speaker 1:even the really good times, you still knew what was, but yet you still, just you, cherished that moment. And I think sometimes we often do it in hindsight, you know, instead of in the moment.
Speaker 2:Yes, yes.
Speaker 1:And I love that you got to do that with her, because you made her last days absolutely a beautiful thing. Instead of it just being about that she's leaving, you made it about living, too. That's a wonderful gift.
Speaker 2:I'm getting emotional. Listening. That is exactly, of course. At the time I wasn't thinking, oh, let's make this about living. We are looking back in hindsight and realizing what the impact was. At the time I was just trying to do the right thing, whatever the right thing felt like one minute after another. But when I look back, when I say like those were the most special years, weeks of my life, and you echo back to me why you just echoed back to me, why those were such special weeks, and I got very emotional, realizing I agree with you. I agree with you. It's so much about living.
Speaker 2:It is a truism, a cliche, that when you know you are about to die, that you are more aware of the world around you. I was about to say what you're about to lose. But if you go at it as what I'm about to lose, that's a downer. That's where grief is in the early stages what I've lost, not what makes me happy. We and many people entered that phase and then it lasted for years, which is not that common to think you're about to die and then suddenly have an extra five years. But we entered that phase where the grass was greener, the flowers smelled sweeter. I held Lynn's hand more than I had. We said we loved each other much more than we had, because we weren't really very effusive about it. Our love language was doing things, not telling each other how much we loved each other. But in those years we said it again and again and again, because who knew when things were going to turn bad again? Right, you wanted that to be in the air between us at all times.
Speaker 1:You've mentioned about your spirituality a couple of times. You've, you know, referred to a couple different religions. Did your relationship with that, or mortality, or the meaning of it, shift throughout?
Speaker 2:this journey? Yes and no. Until Lynn died, I would say probably not. We were open to spirituality. We were open to and I am open to like I have no idea what happens when you die. I don't subscribe to a formal religion that tells me there will be heaven or there will be whatever after I die, or a rebirth. I don't subscribe to any of the formal religions that say that and I call myself an atheist. But I'm not a science atheist. I'm not a oh, science has all the answers. I'm more like well, no, I just don't believe any of the major religions. But I have no idea. And Lynn and I talked about that and we agreed we don't know. We don't know if her spirit would live on All right. Then she dies.
Speaker 2:Now I'm the grieving husband and of course I want to believe that her spirit is living on in some form. And I talk in the book about a couple of things that happened where it's. It's so freaky to think that these are coincidences. You know, lynn must have made this happen. How else could this amazing thing have happened? And so I'm, you know, dying to believe the wrong word, wrong verb. Yeah, I'm, I would love to believe that Lynn is out there. I don't want to believe that she's hovering over me paying attention to my life all the time, because that's really boring as some kind of spirit of whatever the heck happens to us Do. I really believe that?
Speaker 1:No, I just don't know, but I want to believe that and I'm open to the possibility. I love that you're just open about everything. That's just you know. That's such a good quality. You're not closed, everything is just a okay, I'm open to learning. You're just you know. You're such a really free spirit when it comes to that. I absolutely love that.
Speaker 2:Thank you.
Speaker 1:If you could sit with someone who just lost the love of their life and they're just beginning.
Speaker 2:What would you tell them? I wouldn't tell them. I think that if we're talking about the first, certainly the first few months, and possibly even the whole first year the most important thing I would want to do is give them an opportunity to tell me whatever they would like to tell me. If I have the chance to say anything at all, it would be it will get better. I don't know when, but I wouldn't be telling them try this, try that, don't feel this, do feel that. If they ask me about timelines or anything like that, I would say don't pay any attention to society's expectations. Everyone's timeline is different.
Speaker 2:But the most important thing, we who are grieving want our grief to be witnessed. We want to be able to say whatever we're feeling without being criticized or second guessed, and often, often, we want to talk about the person we lost. So I might ask them to tell me about the person we lost, tell me about Jane, and just let it go, let the conversation flow. I've actually been engaged in a series of conversations with a friend whose husband died a few months ago. We talk maybe once a month, we chat and she tells me what she wants to tell me. I learned at least David Kessler's opinion about this. And there are other people very good grief counselors who teach their courses and may be different, other people very good grief counselors who teach their courses and may be different, but he basically says he won't attempt a significant intervention in the first year, that the first year is so much about simply helping the person feel it and letting it go where it's going to go.
Speaker 1:Yeah, I don't think that there's a right or wrong. I do think that lots of times people try to interject in what they think or how the person should go, or you know how long the grief should last or what different stage they should be in. But I believe that they will go the direction that they need to. And everybody's different and there is no right or wrong.
Speaker 2:And I think that simply by showing up for your friend and being willing to listen, making a space and saying I'm here for you, but then without making any demand or expectation. This is the grieving person's space and maybe they don't want to talk. Expectation this is the grieving person's space and maybe they don't want to talk. This is the grieving person's space. And the best thing you can do is to show up, preferably in person, secondarily on the phone, third, with some kind of card, but the cards aren't that meaningful. I mean, it's meaningful to know that someone's thinking of you. It is way more meaningful for someone to call you up or to show up in your life, say hi, I brought you a little food, I brought you a little this here. How are you doing?
Speaker 1:Sometimes you just need somebody to sit with you.
Speaker 2:That's, that's it. That's what I'm talking about Just to just to be there, to be the person who sits with them and acknowledges and witnesses their grief, sits with them and acknowledges and witnesses their grief. That's what you want to give your friend in those first horrible months.
Speaker 1:I just have a couple more questions. You know they say that in order to hurt deeply, you had to have loved deeply. Having lost so much is so hard, but it shows how deeply you still love her and she was so blessed to have you. You two are such a great love story and a story of what love should be between two people. I think so oftentimes, especially nowadays, I think love has been watered down. I think there are such skewed versions of love. Can you tell us what love, true love, is and what you think a husband should be to their wife?
Speaker 2:I always resist trying to prescribe things for other people. So to say what true love is? I don't know what true love is. I know what we had, lynn and I told each other. We were each other's best friends. We were the people who could share anything, who could come back from a party and say I didn't have a good time, who could talk badly. It's the person you're with, in our case, living with, who you know will show up for you and who actually does whatever that might mean.
Speaker 1:It was really about being the best friend, the true confidant, the person who made me laugh most, who showed up for me many times, and then the honor of my life be a weakness to show how much that they love and to meet their wife where they need to, even in the worst of times, and I think it's the strongest that a man could be. Just like you said, those were the most beautiful times of your life, but you also showed so much bravery and so much strength while you met her right there.
Speaker 2:Right there, right there.
Speaker 1:Oh my gosh, this is just so emotional. I honestly think that this could be a lesson for men in how to truly love, and women I mean not just. I mean, of course, this is a book for everybody that's grieving, but there's a lot of women that I think it's hard for them to go there too.
Speaker 1:And it's a book on how to grieve and walk through the hard parts with your spouse, but one of the biggest takeaways from this book is how to love, how to love deeply and to give to another person so purely, with our entire being. So thank you for being a demonstration of what a man should be when he loves his wife. Can I ask how people can get your book or how they can get your grief services?
Speaker 2:Sure, the book is Carrying the Tiger. It's available everywhere. It's available on Amazon but also all the competitors to Amazon. So if you just search Carrying the Tiger, it's available everywhere. It's available on Amazon but also all the competitors to Amazon. So if you just search Carrying the Tiger, it's a nice, unique title dot com. There's certainly the contact me form, which will put you in touch with me if you would like to talk to me personally or do something related to your grief. I will absolutely. I read every contact that I get through that contact me form and I do reply. And also Tony Stewart, author dot com. There's a by the book there that leads I have a screen that comes grieve, because you have truly loved.
Speaker 1:This book Carrying the Tiger, living with Cancer, dying with Grace, finding Joy While Grieving shows that when a person closes their eyes for the last time, love doesn't have to stop. Their story is not over. Your wife lives on and you have allowed us to walk with you through this hard journey, but you showed us that there is a joy in the pain. Grief is the hardest thing that we go through on this earth, but you showed how it is a gift. Grief is a gift because it is a sign that you have loved.
Speaker 1:Thank you for showing me that and our listeners. We are honored by your vulnerability and grateful for the legacy that grief isn't where love ends, it's where it echoes the loudest. For anyone walking through sorrow, your story offers a soft place to land, a steady hand to hold and a reminder that even in the shadows, beauty still flickers. Hold your people close, love fully, and know that even in the hardest seasons, love doesn't die. It just finds a new way to live. And, as we always say at Real Talk with Tina and Anne, there is purpose in the pain and there is hope in the journey, and we will see you next time.
