Living with Chronic Hope: Jennifer Cramer-Miller's Journey

[00:00:03] Hi, I'm Dr Russell Thackeray and welcome to Resilience Unravelled, a podcast with new ideas, new thoughts and new thinking about resilience. Guests with remarkable stories, products and services that can really power up your own mindset and resilience. You can also go to our site for more information, to ask questions or to access some of our resources at resilienceunravelled.com. Let's get started.

[00:00:32] Hi and welcome back to Resilience Unravelled and it's late at night, the sky is dark, the moon is out, the cats are asleep downstairs. But in the middle of the day, across the pond sits Jennifer Cramer-Millers who's joining me today on Resilience Unravelled to talk actually a really lovely subject and something which I think is going to gladden our hearts, lift our spirits and send us skipping off into the future together. How about that Jennifer, how does that sound as an intro?

[00:01:01] That sounds lovely and I'm so glad to be here. Pleasure. Look, where in the world are you? I can tell by the accent you're not in these parts. Yes, I am from Minneapolis, Minnesota and so it is two o'clock here and it is very cold. And I think when most people hear Minnesota, they think cold weather and yes, we are having some cold weather. But what people, I think people don't know this about Minneapolis and Minnesota in general.

[00:01:26] Yes, we have cold winters, but we have so many lakes. We're known as the city of lakes and we have beautiful summers and we have wonderful bike paths and walking paths and all sorts of things other than the cold winter. But right now it is about one degree. So it's chilly out there. Brilliant. Look, I'm so excited to talk to you. So just tell me a little bit about yourself to start us going so we understand who you are. Yes, I would be happy to.

[00:01:53] What I'm really interested in is how do we manage uncertainty and find joy. And the reason I'm interested in that is because I actually had a hard thing happen to me when I was 22. So this was a while ago and I was a happy, healthy 22 year old in college. I just graduated. I was on the West Coast of the United States and I got a business degree

[00:02:18] and I moved into an apartment in Seattle with my best friend and everything was, I was happy, healthy, normal. And then one day I just woke up very puffy and I didn't feel well. So as you expect, I went to a doctor, but I thought maybe I had a flu or something like medically familiar. And instead I learned I had damaged in my kidneys and that was so shocking, so unexpected.

[00:02:43] And the reason that they found I had damage in my kidneys was I was leaking protein in my urine and healthy kidneys don't leak protein. The doctor said you need a biopsy to determine the cause and extent of this damage, which I came home to Minneapolis where my family was to get a biopsy. My dad actually knew a nephrologist, so he said, come here, we'll get it from Dr. Brown. And quickly that sort of changed my whole life. I learned I had a progressive autoimmune kidney disease.

[00:03:13] And within six months when I was 23, I had kidney failure. And when you have kidney failure, your kidneys never unfail. Once your kidneys have failed, there are two ways to stay alive. And it's either dialysis, which is an artificial kidney machine, or to get a transplant. And at 22, that all seemed so outrageous to me. Yeah.

[00:03:39] Nobody at that time, nobody I knew had any problems in life. So I was like, what is happening here? And it was really difficult, but I was just determined to hold on. I was on dialysis. I was going to get a transplant. And then I was just going to return to my life in Seattle. That's how I thought this was going to work. And just to interrupt for a second there, what sort of life did you think you had planned? Because you obviously at that stage were thinking a 22 year old as a young woman, you had all sorts of hopes and dreams. Yes. Yes.

[00:04:09] I planned to have a fabulous career. I used my business degree. I was working at a public relations agency. I planned to, I had a boyfriend at the time. I didn't know if I was going to marry him, but I was going to get married and I was going to have babies and they were going to be pretty babies and they'd be displayed on annual holiday cards. And I was just have the life that I think all my peers also wanted. Just what you would expect your life to be in a glossy way. I did not expect kidney failure.

[00:04:38] And I did not expect to be kept alive by a machine. That was just so far from what I had ever expected. And I was ripped from the West Coast. I came back to Minneapolis and I was 22 living back in my, the home I grew up in, which was very far from my plans of independence. So it was a pretty radical departure from my plans.

[00:05:01] But it's interesting that you asked that because as I went along, I did get a transplant after a year and eight months. And I thought, this is it. This is it. I'm going to get back to normal. But unfortunately, three days after I got that transplant, the autoimmune disease recurred in my transplant and kidney. Wow. So at that point, I really fell into some despair.

[00:05:28] Now, it was a really upsetting thing because I thought that transplant was going to be the train ride back to my future. And it was as if the train was not going to leave the station. Yeah. So I'm glad you asked me about what my plans were, because one thing in this very difficult period of time, I had to start to figure out what I was going to do. Was I going to just be in despair forever or was I going to choose hope?

[00:05:54] And actually, I really was inspired by a Joseph Campbell quote, which was, we must be willing to let go of the life we've planned so as to lead the life that waits for us. Yeah. I really had to come up with this kind of mental shift that I wasn't going to have that life that I had planned, but I could have a good life like I was going to make it a good life.

[00:06:19] And I was very grateful to somebody who donated kidney to me. I felt like I owed it to a donor family to live the best life that I could. Even though I knew that there were going to be problems ahead, I just really felt I was going to maximize the life that I had. Yeah. Now that's interesting because a lot of people in your situation, and I'm sure you've come across them, would have fallen back into despair.

[00:06:48] They would have moped and become victims and it's not fair. And they would have made the almost made the most of the misery. But it sounds like you've taken a different approach, which is to make the most of the opportunity. And for me, that's a simple choice. But actually, it's not a simple choice at the time. It must have been difficult to make or maybe not. It was very difficult at the time. And I'm known as a positive person. I am proud of my positivity.

[00:07:15] But there's a big difference, I think, between positivity and toxic positivity. And we hear a lot about toxic positivity. And toxic positivity to me is not acknowledging that things are hard. So I definitely had to acknowledge things were hard and accept that my life had changed. And I was going to have to manage things that weren't going to be easy. But there was a certain period of time where I felt very depressed by what had happened.

[00:07:43] But then in time that passed where I realized that I got to that point where you're talking about, I had to make a choice. I could have stayed there forever, but that wouldn't have been very fun. I really felt like hope is an engine that moves us forward. And I had so much hope for my future and I didn't want to give that up. And I didn't think I had to. And I really feel like sometimes people, they label themselves by the worst thing that's ever happened to them.

[00:08:11] And I don't think we're made up of the worst thing that's ever happened to us. We're more than that. We all have things that happen to us. And I think that was one of the big turning points that I learned was that I did at such a young age think, things like this don't happen to other people. It's just me. And then as you get older and you go through time, and it didn't take me very long to realize that's light. Like things happen to everybody.

[00:08:38] And don't, it doesn't help anybody to wallow in what's happened to you. Like we're all in it together. So I think one of the big things that made me realize that I really wanted to savor my life was I was on dialysis and I was like the young one. I was with a lot of elderly patients, a lot of characters that we became friends. Like I tell people it was like a medical version of Cheers where everybody knows your name.

[00:09:04] So I didn't want to be there at all, but I was maximizing sort of the camaraderie that we had with the people there. These mostly seventies and eighties aged patients. And there was a technician there who helped all of us. He was young, strong, healthy. His name was Tom. And one day I got to the dialysis unit and everyone was quiet and Sue, the social worker came over to me and told me that Tom had died the night before from the brain aneurysm.

[00:09:33] And Tom was like I said, young thirties, healthiest guy there for sure. And I just thought that doesn't make sense. Like I had befriended this older woman named Olga, who was just hilarious. And she was must've been 80 something. And I just looked at Olga and thought who would have ever guessed that Olga would outlive Tom. And it just suddenly made me realize nobody knows what's going to happen. I'm not any less alive because I'm on dialysis.

[00:10:02] So I really at that point realized that for any of us when we're alive and we're here, we better savor it because nobody knows what's ahead. We all live with uncertainty. Can I, before you go on a couple of questions for those people that don't know, and I don't think I'm not particularly familiar with. But what does the process dialysis mean? Yeah. I'd love to tell you that because most people don't know because most people have functioning kidneys and they, and that's lucky you don't know.

[00:10:29] But when your kidneys fail, your kidneys filter out fluid and waste products. So you cannot live without functioning kidneys. So dialysis is a machine. And a patient is hooked up to a machine that's actually like an artificial kidney. It, they access your blood with tubes and needles. And that blood is filtered through the machine to clear out fluid and toxins and return to you.

[00:10:54] So it keeps you alive because it's doing a very part-time job for the full-time work of kidneys. And so you don't feel as well as you would if you had kidneys working 24 hours a day. But you go in, if you go to a clinic, you go three times a week. And that procedure that kind of cleans you out a little bit and then you come back in a couple of days. Now, you also said something that was really interesting, a slightly different quote to the one I know. A really interesting way you said it though.

[00:11:22] You said hope is the engine for the future, which I thought was a lovely phrase. But I've always heard it said that hope is resilience is the engine and hope is the fuel. And it doesn't make any difference. I like yours. I think yours is beautiful. But what I was going to say of hope is the engine, what is the fuel in your model? Because I think it's a brilliant phrase. Oh, thank you. Because I just believe it. Like the way that I keep moving forward is hope. It's like my engine. But there are specific things that I have to do.

[00:11:51] And I advise them to anybody because like I said, I believe that we all live with uncertainty. It's just being a human that comes with the program. But what I really started to focus on is not what I had lost, but what I still had. And things would just occur to me and I would just cherish them. And they were very simple things. Like, I remember going to a movie and it was funny and I was laughing with my family.

[00:12:19] And I just thought, you can't take away my laughter. That's, I still have that. And I started to come up with the, I still have list, which I eventually coined my lucky list. Because there were so many things that I felt lucky for that. Yeah. I did have this amazing family and I did have amazing friends and I could still enjoy wearing a cute outfit. And I could still enjoy blue sky.

[00:12:45] And I still loved like the attention from my dog and all these very simple things. And I think if you become starving, food tastes really good. Yeah. So when my life became, I don't know, was threatened, everything just seemed so rich. And I just was so glad to be alive. And I think creating a lucky list is a really good tool for all of us because we're all going to have hard things happening.

[00:13:15] I like to say that life is a mix of beauty and bummers. And if you just focus on the bummers, you miss out on the beauty. So I think it was a real perspective shift. And I like that as well, because it seems to be a little bit more practical than a gratitude list. Because I think sometimes the gratitude list can be a bit cloying, but the lucky list is a really great idea. So basically take us back to the hospital. So you were sitting there, someone, Tom, I think you said had died. Yeah.

[00:13:42] So is this the next set of kidneys or is that too neat a part of the story? No. After that happened, I just realized I got to keep my hope up and keep my attitude and know that when I'm here, I'm not like half here. I'm totally here whenever I'm here. But then I did need another kidney after I told you that disease recurred.

[00:14:03] And I was going to appreciate every day I had with that kidney and also cherish the donor family who made that possible. It lasted five years and three months. And then I needed another kidney, but I like back to the lucky list in that five years and three months, I got a master's degree in business. I started dating. I met a guy who became my boyfriend, who became my husband, and I got married.

[00:14:30] And so I was really realizing things are happening. I'm having a life. It's a little bit harder life than maybe I thought I was going to have in terms of the health management, but it's a very robust life. Yeah. And so I kept appreciating those things and, and those are good things. So when I needed the second kidney, I had been married for a year and my kidney function petered out. The kidney lost its steam and I got another kidney.

[00:14:58] It was another donor who through the goodness of their choice to become a donor was able to give me more life. And in that kidney, I got pregnant and I had a child. So I think that is such a cool thing about life, adding life to people like not only did someone donate more time and memories and joy to me, but they allowed me to create a life. Exactly.

[00:15:26] And I have a, like a wonderful daughter in this world right now, and she wouldn't be here if it wasn't from the power of people helping people. So this is your third kidney. That was my second kidney. And then that kidney ran its course for my third kidney.

[00:15:42] This was a cool story too, because my mom who was with me every step of the way when I moved back home, she just was like very, my mom is such a beautiful alchemist of taking hard situations and making them. Like she always finds the funny in things. So we actually, I can't, it sounds odd, but we really had a lot of really hilariously fun things happen when we were having hard times.

[00:16:08] But in that first time period, she wanted to donate her kidney to me and we weren't a match. But by the time I got my third one, the matching criteria had changed and she was able to give me her kidney for my third transplant, which was the most beautiful thing. And I was really reluctant. I thought she had done enough for me already. Yeah. Because of course we've got two kidneys, haven't we? And you didn't have to have them both replaced at the same time. It was just one at a time, was it?

[00:16:38] Yeah, it's such an interesting thing. Most people don't know this, but when you get a kidney transplant, they put it in the front and your natural kidneys are in the back. Yeah. So they stay in there. So when I got my first one, I had three kidneys in there. And then I got the second one, I have four, but then they had to take one out when I got the third one. And when I got pregnant, I remember my OBGYN said there's a lot of things in there, but the baby just figures out where to go, which I thought was an odd concept. But yeah.

[00:17:07] So by the time my mom was able to donate to me, it was my third, but I, some of the, another one had been taken out. So you had a bit more space. That was just amazing. It was just the, just, she's a kind of a small woman. And then I thought she's such a giant of grace and goodness. It's just was really hard to describe what that feels like when someone steps up and says, yes, I want to have this surgery on your behalf. Yeah.

[00:17:36] Because people forget there's an invasive procedure, isn't there? To remove and to install a new kidney. Yeah. It's actually there's, I'm on the board of the national kidney foundation and the board chair. I'm also a volunteer for donate life. So actually the kidney removal surgery has become much more simple than it used to be. It's laparoscopic surgery. Right. And the recovery is pretty quick. It's a more of a surgery to get one.

[00:18:03] If you have kidney failure than to have someone donate, but there's amazing people donating kidneys, which I want to jump ahead. Because this is another miracle of the story. So my last kidney transplant was my fourth and it'll be 14 years old this August. So it's going very well. It's my best ever. This is the fourth one. Yeah. Fourth one. And the story with this one is my husband wanted to donate his kidney to me, but we weren't a match.

[00:18:31] And so we went into, he went into a paired exchange program, which is such an amazing program. It's really a game changer for kidney transplantation. What it means is if he was a willing donor to give his kidney to me, but didn't match me, he could go into a pool of people who had willing donors, but no matches. And in that pool, you divvy it up. So my husband's kidney went to a man in North Dakota. And in exchange, this is so cool.

[00:19:02] An altruistic donor, which means somebody who wasn't directing it to anybody else, went in and said he wanted to donate his kidney. And he was 25 years old and he was a match for me. And I can't even explain how steeped in gratitude I am for people and what they do, because I remember when they called me and said, there's a donor. He's a really good match for you. He would like to have the surgery soon. If it's okay with you, he's been wanting to do this for a long time.

[00:19:32] And I said, oh, my gosh, he's 25. How long could he have wanted to do this? So my story to me, the best part of my story, aside from resilience, of course, and moving forward through hard things is just the power of people helping people. It's amazing what people do for people.

[00:19:52] And that makes me feel so happy to be alive, because if we look around and see how people show up for other people, it's a really pretty cool world. And it's important to remember that at this moment in time, isn't it? Because sometimes we lose a bit of faith and hope. But I was very interested in this idea. You said earlier that you're an optimist, a born optimist or something along those lines. And you talked about joy and such like. And you talked about hope.

[00:20:21] So I'm quite interested to talk to hear your views about how those three things work together. Are they the same thing, just call something slightly different? I think there's some slight differences in them, but they do all work together for sure. So we were talking a little bit before we started about joy. And I think people think joy is like this buried treasure, like they have to seek far and wide to find joy.

[00:20:49] And I think joy is so much closer than people think it is. And. When I first got sick, I kept thinking I wanted to go back to Seattle, I wanted to go back to the life I had, I kept trying to go backwards. And then it took me a little time to realize there's no going back. There's only going forward. Yeah. Yeah. And in that process of living our lives and realizing we can't go back to any place.

[00:21:19] Like we have a now and the Tom, the death of Tom also made me realize there is a now that we can't take for granted. And so the joy piece is it's so close by if we just can open our eyes to see it.

[00:21:34] And it could be the most simple thing if you're sitting with a friend or a spouse or a family member and having a conversation and have a funny thing that you funny internal joke or a funny memory and you're laughing. And that's so much joy just right in that moment. And I there's a game called I don't know if you do this in the UK, but sometimes in America, like on road trips, people play this yellow car game to just distract kids in the car.

[00:22:05] And it's simple, like you just whoever sees a yellow car first says yellow car. And you see so many more yellow cars than you ever want when you play that game. I think joy is like that, too. Like we need to pay attention to the mundane moments. I think like the mundane can be so miraculous if we pay attention to it. Do you know what, Jennifer? I totally agree. It's really annoying sometimes on a podcast when the host just agrees with everything you say. But I just really do.

[00:22:35] I just wish you'd just written this down in a book somewhere because that would be perfect, because then people could open it up and read it and hear the story and go backwards and forwards. Just imagine if you did that. You know, it's interesting you said that because I do have a book out. I do a lot of one on one mentoring with patients. I'm a patient advocate because. OK, good idea. Like I said, like I'm not the only one who goes through hard things. That's become very obvious to me.

[00:23:01] And so as I've been talking to people and doing some work with people, I realized I want to reach people more broadly. And I'm a writer. So perfect, perfect equation there. So I did write a book and it is called Incurable Optimist. And so a lot of this, what I've learned is in the book. But what's been interesting is meeting so many people like I was on a book tour and doing different things. And I can't tell you how connected I feel to everybody.

[00:23:31] That's why I love talking to people like you and just your view on resilience and how we move forward in life, because I feel like we're all so connected. And I have had people come up to me who have had the list really surprised me. People have contacted me that have gone through chronic illness. Of course, people with cancer reached out to me. People with substance abuse have reached out to me. People, someone reached out and said they they're not an optimist, but they want to be. And so they really enjoyed some of the messages.

[00:24:01] And it just all makes me realize that we're all in this together. And that's been a cool realization. And what's really interesting about what you're saying is that then there was a piece of work done by Professor Richard Wiseman in the UK some while ago, and he talked about the correlation between attitude and luck. And you were immensely lucky to get that many kidneys, but it wasn't luck, was it? That you put yourself in that position, you had the hope, you stayed alive, you made the best of what you were doing.

[00:24:31] The chances were that you were going to get another kidney because of that attitude. And I don't think people realize that's the case, isn't it? Because you are more likely to get the outcomes you want if you were aiming towards them rather than the outcome you would get if you're just miserable and sad and think it's never going to work. And I think those choices are really important. And also, I think what's really important is if I wouldn't have gotten kidneys, if I would be on dialysis right now, I would still be an curable optimist.

[00:25:00] I don't think we can define ourselves by one situation or another. If I've pinned a lot of my hopes on different things, and they haven't always happened. And it's made me realize not to pin my hopes on one thing, but to have my hope be the engine to move me forward no matter my circumstance. Yes. And I think the thing about hope is about what it means to you rather than what it means you have, because that's the difference.

[00:25:28] A lot of people situate their hope or their enjoyment in possessions or material things. And actually, you will appreciate a days of feeling well because that is precious, isn't it? Yes. Yes. And all the things like I still have a lot of management with my health, but it's okay. I'll manage it as best I can because I love that I'm able to do things. But sometimes I've had some limitation on my travel during certain conditions if I have things going on.

[00:25:57] And we are actually going to be traveling tomorrow. We're going to go from cold Minnesota to Florida and I can do it. I can go and I'm really excited about it. And travel might seem mundane to some people. And so it's that appreciation that I carry around me for things that I think we all want. This is one of my favorite examples. If your power goes out, if you're in a storm and the electricity goes out, all these things that you can't do that you usually do,

[00:26:27] maybe like your refrigerator isn't going to be cold for very long. You can't take a hot shower. Or when the power comes back on you, just appreciate those things so much. You do. That's how I think we need to consider our lives because we take for granted that we're here and are now.

[00:26:44] And so when we can travel or we can eat a delicious meal or we can just have energy in a day to work and be productive and be with people we love, that's all really stuff for the lucky list. Yeah. And it's interesting because you do hear people moaning and grinding and whinging. And I'm sure you don't think, look what I've been through. I bodies are together because everyone has their own stuff. But it does give you perspective. But a horrible question, but I've got to ask you, you said this kidney has been here for, I think, for 14 years.

[00:27:14] Is there a likelihood you might have to have another? Yes, that's a good question because you would wonder. Yeah, there is. I, this autoimmune kidney disease that I have is not gone. It's not going to go away. It's until they find a cure, which would be amazing. And I'll hope for a cure all day long. I like hope. I think it's a good thing. But no, there is. I'm holding on right now and I'm savoring that.

[00:27:41] But I think that there is probably a pretty good chance within five, 10 years, I might need. Okay. And I can do it. I've done it before and I can keep on this path. Do it again. Yeah. And I'm also very encouraged by innovations. Yes. I work with the National Kidney Foundation and some of our partners. We're really focused on innovation. And there's some really interesting innovations out there.

[00:28:11] And that gives me hope. I think, like, I know people who work for a company here in Minnesota where they're doing bioengineered pig kidneys. And I think we've all heard about the articles and the headlines about pig transplantation. And it all sounds very far-fetched, I know. But I think those people are in the hope business because these people I know are trying to eliminate the wait list. And there's many more people waiting for a kidney than can receive one.

[00:28:40] And if this comes to be, that wait list will be eliminated. And that is a really cool part of what I think will be the future for people who have these, any kind of heart disease, lung disease, kidney disease. I believe in innovation. And I think that also is an engine of hope. Absolutely. And what wasn't possible last year, it's more likely to be possible next year and vice. And that's the way things be. It's interesting how autoimmune is becoming at the root of many problematic areas.

[00:29:09] I read something recently about some aging issues around autoimmune, like Alzheimer's thing, whatever it was. So you're in the vanguard of people with unusual ailments when you put one to immune. Yes, it is puzzling. So many people, I wish we could figure that out, but it's good. You will. You won't, but someone will. Yeah, no. As long as you get the benefit, that's the key. Yes. So how can people find out more about you? Where can people buy the book? Tell us all that stuff.

[00:29:39] People can definitely visit my website, which is JenniferKramerMiller.com. And I should say Kramer is with a C. So C-R-A-M-E-R. A lot of people want to do that with a K. So JenniferKramerMiller.com. And on the site, you can see a lot of my essays. I've got essays that I published in various places and you can see my story. And then you can also get my book on my website, but it's also widely available,

[00:30:06] Incurable Optimist, Living with Illness and Chronic Hope. It's on Amazon. I know a lot of people do their book shopping on Amazon, but it can also be ordered by, I know people are all over the world. Any local bookstore can order it for you. Yeah. It's got some spectacularly good reviews as well. So, um, I know it's been really, it's been such a fun journey to, to one thing I just will say quickly is when I was younger, I didn't want to tell anybody I had any problems with my kidneys. My kidney transplants were in the background.

[00:30:35] I did a lot of work with clients on custom homes and I just didn't want to be defined this way by the worst thing. Like I said, that had happened to me, but after a period of time, I realized, oh, I can't be defined by that because I'm doing wonderful professional things and I'm married and I have a daughter and I, I want to tell people that none of us need to be defined by the worst thing that's happened to us. And yeah, I really believe in moving forward with joy.

[00:31:03] And on that note, it's time to say goodbye, but it's been a fantastic treat to meet you. And I love what you've been saying. It really cheered me up and all good luck for the future. I think if there's ever a person that deserves joy to find even more, you're the person. Thank you so much. I really enjoyed talking to you. You take care. Thank you. Hi, I hope you found that episode useful and entertaining.

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