EPISODE 32: WHO YOU ARE IS WHAT WE NEED

Guests: Leo Newman + Erynn Newman

Lauren: So, okay, first of all we're sitting in your living room, but we're also having a podcast at the same time.

Leo: Which is really cool.

Lauren: Yeah! But there's really nobody here except us and your cat, but all of the world can can hear you too.

Erynn: That's not scary at all.

L: So I just wanted to start by saying it's really neat and weird and I want to thank you for being willing to do this with me.

Leo: Fun. And I'm thankful that you were able to make it happen here.

L: Yeah. It's kind of exciting to be in your lovely home and sitting with you.

X: Yeah.

L: So last season, Leo and I talked. Yeah. So episode 11 “Being Yourself in Community” and, at the end of the episode, you talked a little bit about your relationship with Erynn and there've been people who have asked for more interviews with partners and so Erynn... you're officially the first partner who is participating in This is Not What I Ordered. So I'll just start off by saying like... do you guys want to tell a little bit about your story as a couple and, from that perspective, dealing with health challenges.

X: I think what's important to know about our relationship, especially as it relates to our--my journey with chronic health challenges--is the fact that we've known each other for a long time and we met in high school. We were not high school sweethearts but I was in love with her when I met her. She, we were in 10th grade I believe. Right?

E: Mm-hmmm.

Leo: And she was the most amazing person I had ever met. I've never met anyone else like her and so I spent the next two or three years kind of pining and not really getting anywhere. And so our relationship started out with a really strong friendship. What we built in that time where we weren't actually a couple was a foundation that I think is what has served us well with all of the crazy stuff that unfolded in the years to come. And I think more important, at least in my perspective, looking back, is the fact that she didn't know what she was signing up for, you know, when you, when you have your marriage vows and you say whatever it is that you say, some variation of “Till death do us part”...

Erynn: In sickness and in health …

Leo: [laughter] Right. In sickness and in health more specifically. She had no idea that I was going to be the one requiring a lot from her, but it was going to be the burden that she was going to bear, um, in the way that she does.

Erynn: And you… We were actually, um, we were engaged in college and then we ended up postponing our engagement and he went to China and I was starting grad school, but it was while he was in China that he started getting really sick and we had worked really hard in the year or so, I guess interim between breaking up and not really knowing what the future held for us to like getting our way back to that friendship. Because you know, awkwardness. It was like, I was gonna marry you. And now I don't. Uh, and so, um, but it was while he was getting sick and I was, I had done some overseas missions as well and so I remembered what it felt like to be so far away and disconnected from everybody. And so I wanted to be the person that was there for him while he was so far away and especially when he started getting sick. So we talked a lot and so when he was getting sick and was not able to get the help that he needed, I was like really mobilized and I also was just thinking, you know, “I want to be there and I want to help him.” And just kind of those thoughts of like I was, you know, starting at a different life. I was in Raleigh at the time, I was in grad school. I had a whole new set of friends with people that had never met him and didn't know him. So I think my life really could have gone two different ways. Like I could have at that point and been like, “Okay, this is my new life and I'm moving in different direction.” But I just really was like, I can't imagine what my life is like without him in it. And so that was really the time that I think we realized, even while he was thousands of miles away that we're going to be in this together no matter what happens. And so we were actually engaged before he came home from China. We met, uh, in Lithuania where my sister and brother-in-law were living for one week while he had vacation and I had vacation and we were engaged again at that point. Um, so I did know at least that he was sick, like he had been diagnosed with Crohn's by that point, but I had no idea what that would look like. You know, I didn't know, like you said, I didn't know what I was signing up for, but I knew that whatever it was, we were going to be in it together.

Lauren: I love that. What would have been some of the key moments for both of you as a couple dealing with this health journey?

Leo: I think for me the key moments have been when there's been a twist in the diagnosis or treatment related to a diagnosis. For example, Crohn's disease to me was not a big deal. We were managing that well and it wasn't fun by any means, but I think we were navigating the far more easily than some of the other things that came along. The first big shift for me was when I got the diagnosis of kidney failure and realizing that that was going to sort of shape the future in a different way and that was going to involve our whole family.

Erynn: So Leo has always had kind of have a dark sense of humor and he used to always make jokes about, you know, “When I am gone, you're going to have to…” whatever, but it always was just a joke. But when we got that initial diagnosis and that doctor who was so helpful, basically just kind of made it sound like he had 15 or 20 years max and we're in our early thirties at that point. I was thinking, “I'm going to be doing this alone. I'm having to prepare to lose him.” And I was, I mean, how do you prepare for that? It's not something that you can do. And so, fortunately, we fairly quickly found out that that doesn't have to be a death sentence, that he wasn't necessarily... that wasn't his end of days prognosis. But um, yeah. That was definitely one of those moments that was like, this changes things. The way that we have been [living] life and the way that we have looked to the future is shifting in a dramatic way. We were new to this area. We didn't have a lot of close friends. We were new at a church and so that doing “life in community” thing felt very small. It felt like we're kind of alone in this. And so, um, that was hard because I think community is necessary, but it also certainly bonded us even closer because we were in this world of whatever is going on, we have each other. And we had a young child. So that part was a challenge because I certainly felt like, in some of those early days I was doing all of that on my own because he was still trying to work so that he could provide for our family, but also was tired at the end of the day so he would come home and sleep. And so, um, I felt like I--on days that he was sick--was taking care of two. And it was I think very lonely, but at the same time drawing us closer and closer because we were all we had for awhile.

Lauren: It really strikes me when you say essentially, “Well, whatever happens, we have each other.” That's no small thing.

Erynn: No,

Leo: And it was the only thing you can count on when your health is rapidly changing, you know, and when you don't know what diagnosis you're going to have from day to day or what the symptoms are going to be, etc. etc. It's nice to be able to have an anchor, you know, someone that you can count on regardless of what that means.

Lauren: And I remember in your episode 11, Leo, you said when things get scary and difficult, the two things you turn to or your wife and your faith and that they're the two biggest reminders of what's important.

Leo: Absolutely. And that's stIll true. There have been times where we've made the choice together with ongoing things that I'm receiving treatment apart from the family. So I might be three and a half hours away trying to take care of that end of things and they are here running home and family, which is hard. But having that, that anchor of being able to say... I can count on family because, even though they're not here, we're still together. We still are a unit and I can count on my faith because that's with me wherever I go.

Erynn: I was thinking about that aspect when, when you talked about the fact that, you know, we were again new to this area, we didn't know people. But we had each other and we do feel like God goes with us wherever we go. So you don't ever feel completely alone. So that's, um, that was definitely a source of comfort. I was laughing because I was remembering one of the times that he went down for just this... It was supposed to be a--I don't know if you even planning to stay overnight...you were just going to go down and get your tests and have your clinic and then come back. And then, uh, what was it that actually… it was that your white blood cells were super low? Something like he had just bought him out with his… whatever. He was not well and they decided to keep him in the hospital. And so, um, my sister came up to stay with us, but that was like this week that everything that could possibly go wrong went wrong and such fantastic ways. Like our plumbing broke and not just like broke so that we couldn't use our water, but started backing up through the basement and ruined the carpet down there. So I had like ripped up carpet. I had toilets that I couldn't flush. We had had a tree fall on one of the vehicles. we didn't have power for a while. Um, there was other stuff, too, like I can't even remember everything that had gone wrong. But like it was one thing after another and I was just, for one, I was just, I was very thankful that my sister was here so that I wasn't completely alone. But, uh, I was--Oh, I think I got sick with a stomach virus at some point durIng all of that as well. So, um, that was just one of the most difficult weeks of my life. He was there alone and frustrated about being stuck in the hospital and frustrated about not being able to help, trying to call plumbers. I think we had five different plumbers come out before they figured out how to fix it. So we went like three or four days without running water, all of this madness. But, uh, that was a time that I think God was just really kind to us because I found out even though I had felt alone in this new place, people came from everywhere to help us. My pastor and his wife said, “Come and stay with us. Let us make you dinner. Let us take Hudson for the whole night and just like relax,” and they brought us meals. Some friends that we hadn't heard from in a long while came and actually took care of the carpet. Somebody bought us a shop vac. People were just showing up in really huge ways. Someone that we had a--I think he was more of a friend of a friend--like we knew him just in passing. Because Leo wasn't planning to be there for that long. He ran out of clean clothes and so he just went and bought him some new clothes and brought them to the hospital. People were just so kind to us and so good to us. And so that was definitely an instance of knowing that like we were not alone in this new place. And so that was really, really great.

Lauren: I love what you said about “God is with us wherever we go,” and it seems to me that the same is true of your family. That you've built a family in such a way. It's almost like having a boat in the ocean that you just really trust the construction of that boat. You don't know what the ocean's going to do, but even when you're not together, um, it seems like--Leo, you were talking about… that you had like an anchor at home. I know that that Erynn is, is taking care of things and that it's not easy, but you know, you can trust that. That's really cool. I want to invite you to turn to each other.

Erynn: Okay.

Lauren: And just take a moment and anyone can go first, but to just share something I want you to know on this journey was with the health stuff, like something that I want you to know.

Leo: I want you to know how incredibly thankful I am for your sacrifices and for your constancy.

Erynn: I'm an easy crier. Yeah. And I just want you to know that we are here and we want to be your constant. And this journey as you know, even though it's not something that I think either one of us would have chosen that I'm thankful to be on it with you. And we are, like we talked about, in it together no matter what.

Leo: And I love you. Even though I know you know.

Erynn: I love you too.

Lauren: f you want to kind of stay facing each other, um, what is it like to be talking, I mean you kind of answered this to each other, if that makes sense. Like what is it like to be talking about this outside of just your regular living room conversation knowing that people are listening.

Leo: I'm just really aware of the fact that I think we've talked a lot about what's going on but we haven't spent a lot of time talking to each other about the pieces of this, the ins and outs of this.

Erynn: Yeah.

Leo: I'm very aware of that and I don't really know why we haven't done that. I think life has not necessarily made that necessary and we haven't prioritized it because of that. I think it's when we talked about this today, just like the amount of trust that we have in each other.

Erynn: I think because we know each other more than better than anybody else in our lives probably and have for so many years that like we just kind of know that this is a sure thing. And that we're going to be there and so it hasn't felt like necessarily a necessity to talk about like if something happens or what changes because we know that changes are coming and they always do, but we are going to be that solid thing in the middle of that. Even when it's really hard and sometimes it is really hard.

Lauren: And so if you want to stay turned towards each other, I’m gonna feed you like the beginning of a sentence. A question that I have for you…

Erynn: Now I’m emotional.

Leo: There are some that run through my mind. Yeah. I guess one question that I have for you is “What would you say has been the most viable piece of this journey?” Because I know that it's been important for me to kind of look at it from the lens of saying “There are gifts that come out of this” because I didn't want this, but it's what I got. And so I'm trying to find those gems and mine them where I can, but that it is both an individual and a family journey. So from your perspective, what would you say is the, the unexpected gift?

Erynn: Well, like we talked about the fact that like, you know, we just trust in each other and trust in God. But I think seeing that and not being, not just taking for granted that like, “Oh, I know that God is with us and I know that we're going to be okay.” Like seeing it in the actual worst of possibilities. Like I think you just always say, “Oh, no matter what.” But you know, no matter what seems like it's just gonna be whatever you anticipated it would be. But when “no matter what” becomes like this huge wave crashing over you and it's not what you anticipated.. um, I think seeing how we were able to hold tight to each other even when things were really hard and seeing that God was still good, even in the midst of him giving us circumstances that we didn't ask for. So that's been a blessing to me.

Lauren: So the next sentence beginning is “One wish that I have for us as a couple…” One hope or wish...

Erynn: I think my wish for us as a couple is just that we can fully enjoy it and be present in the moments that are peaceful. You know, when it's not crisis. I think we lived for a long time in crisis mode. We just need to survive this and get to the next thing. And now we're very much in building mode where, you know, we're both trying to, in the last two years, we both launched careers, I published my first book and started an editing business and you are starting your practice. And so it can always seem like we're building towards the next thing. But I, uh, I think my wish is just that, we can have those quiet moments when we say “This is life now. And let's just really appreciate it to make the most of it where we are.”

Leo: I like that. I guess my wish for us… I like that very much. I want that for us too. If I pick something else, I guess our wish, my wish for us would be that we become--for our son and for our family and friends, our community--an example of how to do this well. We won't be the last. So giving other people a bit of a roadmap to the best that anybody can. I mean that's going to be different for everybody.

Lauren: What do you both know about how to do this well?

Leo: Well I think that it really helps--and this is something that has taken me, I mean I'm still learning it--but in the last year it really hit home to hold loosely to what you think, what you know and to what you expect. And to be willing to accept things that you weren't previously willing to accept or even putting on your radar. Because that certainly makes it a lot easier to navigate whatever comes, you know, there's so many unknowns. I think that's a big piece of it.

Erynn: Your plans are okay for a basis, but to… yeah, like you said, hold them loosely and then, um, yeah, to just know that life happens while you're still moving towards the next thing and to grab hold of those… I mean, that's what I just said in the last thing, but just, yeah, take hold of the moments that you have that are…

Leo: And I'm not, um, I'm also really aware of the importance of having others as a part of the journey. Not, you know, I don't want to beat a dead horse, but I'm not letting that go. The community aspect of our being able to do this has been so critical. There's been a lot of conversations that we've had over the years where we've said even outside of the health struggles, we need help. Whether it was a financial crisis that had hit or something else. And you have always been one to say, we have people who love us and would support us. And I'm always the last to give into that and to say, “Yes, let's do it.” But...

Erynn: I know it’s hard for you because you want so much to be the strong provider and sometimes you are the one that needs help. And so I think it's harder for you sometimes ask for help. Whereas I am always ready to be like “I can’t do this! Help!” And so I'll say, “Do you think maybe now it's time for us to say we could use a little assistance with this?” And so I know also as someone on the outside, it's so helpful to have specific ways that you can help. So instead of just like, you know, people will often say, um, “Let me know If there's anyone I can do.” I think people really mean that and they mean well. Um, so it's helpful for us if we can specifically say “When you said you'd like to help…. like tonight, it would really be helpful to have a meal.” Or “We could really use some help. Leo has been sick and our yard hasn't been cut in three weeks. Can somebody please come cut our grass?” Or when I had all this plumbing issues and just like, “Hey, who lives nearby and has a vacuum I can use?” So like specificity I think helps. If we're willing to say “We need help with specific things” and if people are willing to say, “This is where my skills lie and I can help you.” Um, so that's, I think a big part of living in community is like knowing people mean it and really offErynng real things and not just like, “You know. I'm just here if you need me.” But like specifically “Let me come clean your house. Let me come, let me watch Hudson so you guys can have a date night.” I try to do that with other people too when I see people that are... I think that's one thing that this has done for me in a big way is that I know how helpful it was when people were there for us. And so when I see other people who are struggling with something or in the hospital or have somebody sick or a new baby or whatever it is, like I remember the things that were most helpful. And so I can offer that when it's me that has the chance to give back because that's huge. Like I felt like we moved here in health crisis and so all of our friends that we met, it was like, “Hi, welcome to us. We don't have any money. He needs a kidney, we desperately need everything. Please help us. Nice to meet you.” Uh, and so I just felt like we were take-take-takers for a really long time. And so, um, it's really good to be in a place right now where things are a little more stable where I can say, “Hey, how can I help other people?” And I think that helps us to, uh, to be stronger as a family. When we are able to look outward and see other people that we can help administer to.

Leo: I'm learning that asking for help is not a sign of weakness but is, in and of itself sometimes, a strength. You know, my, my illnesses are not a personal failure, they're just what I have, you know. And like I said before, we won't be the last to walk that journey. So even though it's been hard being able to look to others to say, “I need help with this,” doesn't have to mean that I'm weak or that it's a failure.

Lauren: Just thinking for a moment, because I think we all need to hear that. And I can see for you, Erynn, that something comes up when he says that.

Erynn: Yeah. Because I don't want you to feel like you fail us because you are… you are what we need in the weakest phase. It’s who you are. It’s what you are.

Leo: That's something that I think about. It makes it easier to ask for help. Some of it I think is a cultural expectation. Men are supposed to be a certain way and we don't build into that expectation a lot of flexibility for the unexpected or the wide variations in just what we can bring to the table as human beings. And coming to terms with that and learning to let that ebb and flow as I change--as we all change--hasn't always been easy, but it's definitely been easier over the last year. I think sometimes life just kind of smacks you down and you don't get a choice. You just have to learn.

Lauren: When you said what you said about, “I'm not my illness…” Erynn kind of touched into that and was like, “Yeah, and I really want you to know that exactly who you are is what we need. You. Not all the abilities or lack thereof.” And then you made the point that there are some cultural expectations. And so it's like, what I like about this conversation is you're, you're making room for all of that. You're making room for the swirl of realities and I want to ask both of you--and you can answer to each other. Um, what… How do you hold all of that? How do you, individually and as a couple, hold the understanding that you're not your illness and the pull towards wanting to be able to provide?

Leo: For me, I am learning and practicing as best as I can to just be in this moment. And that helps a lot because then I'm not so wrapped up in the expectations of what someone else is imposing on me from the future or from what others have said in the past. It's about right now and how I deal with that, whatever this moment is. You know, part of it too is, is me coming to terms with who I am as a person because I make jokes in the past or, or more frequently.. In the past have said that I'm dead inside. And that's what helps me. The truth is, obviously, I'm not dead inside. But, um, I really have very little tolerance for caring about what other people think and their expectations that are imposed on me. Largely, many times, if I'm living under the weight of someone else's expectation is because I've chosen to do that. Whether I'm conscious of it or not. And so learning to kind of let some of those things go, confronting them for what they are and just saying, You know what? I'm getting too old and I'm not healthy enough to live for anybody else at this point. So that frees me, frees me up and gives me a lot more space to take in some of all of that stuff.

Erynn: I don't remember exactly what the question was. [laughter]

Lauren: How do you hold all of these realities?

Erynn: Because there was something that you said in there that it was something that I wanted to talk about, but I don't think it actually answered that question.

Lauren: Well you can go with whatever. You take it away.

Erynn: I was just thinking when things that I don't know if they're cultural or if they're just expectation, but I think one of the things that has been a struggle, a battle, is just fear and worry about the future. Again, grateful for our faith that I can take to have a place that I feel I can take those fears and that I have hope that, no matter what happens, I know the future is secure for us. But yeah, I think letting go of expectations for now, but of also having any control over what the future holds and learning that all that worry does is robbed me of the joy that we can have right now. And so I'm just trying to focus on hope instead of fear I think has been a big thing for me.

Leo: Yeah.

Lauren: So just want to give you a reality check that what you're both talking about right now is incredibly powerful and I just want to thank you because this conversation is going to be hugely important to so people. So whatever you think is the value of what you're saying, multiply it by like at least 10. I have an Instagram post that I made while back on the podcast instagram page that has topics that are, uh, the question was “What are some of the biggest challenges living in a relationship where there are health challenges present?” Feel free to pick any: not feeling guilty when my husband does the housework. Sexuality while in pain. Fatigued and/or when your illness affects your sex drive. Figuring out how to plan dates when you can't eat at most restaurants. Having to constantly cancel and that I can't always do normal people things. Maintaining a self care routine, negotiating need for downtime and space. So balancing solitary and self care. Time guilt in general, sex in general, communication during a flare. So I don't know if any of those sound interesting to you.

Leo: Well, one that's a little less intimidating for sure is the need for downtime and solitude because that is a big thing for me. I really am introverted and even when I'm having a good time in group or social settings, I really have to have a definitive done time and, gIven that I spend my entire day and long hours at that, with people in conversation and in their pain, even in their celebrations, I come home and the very last thing that I want to do sometimes is be in a relationship more. Which you know, I feel guilty about sometimes, but for me I have learned that I have to make that a priority because if I don't, it becomes a downward spiral and it just, it really becomes a bigger issue that snowballs over time. It negatively affects my parenting and negatively affects our relationship together. Our communication. I mean it really affects every part of our relationship. And so the first thing that I have learned to do though I don't know that I do this well all the time, is simply to give myself permission to just do what I want to do and not feel too apologetic for it. If I come home at the end of the day and what I want to do is watch something on television and not be bothered, that I try to guard that time to the best of my ability. The hard part, I think the tricky part for me is doing that in an others-centered kind of way... that's not hurtful or disregards their need for whatever It is they have at the moment. You know, having a five year old, their needs are always front and center.

Erynn: It is, it's easier for me because I totally understand that it needs to go and just like unwind by himself for awhile and not be in conversations. But we have a five year old who's just like, “I haven't seen you all day and I have to tell you all the things.” He’s so excited, um, to be able to just talk and talk and talk. And I usually am excited to have someone home to direct this talking yet because it's been me all day. So yeah, but I think, I think it has to be something that you communicate about for sure that like we know, “Okay, I need an hour so that I can decompress,” and then rather than just ... trying to decompress in the same space as each other and that not really working. And then we just feel frustrated the rest of the night. If he has that time then he can come back and be really fully present and we can do something together. We can, you know, play flashlight tag through the house. We can, you know, have… whatever hudson is excited about doing or whatever we need to do. It's going to be a much better time spent together if he's been able to have his decompression time first. And so yeah, I fully understand that and I'm on board with it because I have seen it work both ways and I have seen how frustrating it can be for everyone involved if he doesn't get that. Hudson is starting to get it, but you know, it's definitely harder for a five year old who just wants your full faith and attention all the time. So, um, but he's a good sport and I think he has enough of our personality traits too, that, you know, he also, and he's an only child so he has had to get good at entertaining himself. And he does a decent job of that, but he also really loves to have time with both of us giving us his full attention too. So yeah, balance. I mean that's, isn't that the thing that everybody struggles with, whether you have health concerns are not like just finding the right balance of taking care of yourself and doing the things that have to be done and take care of your family and being present in the moment.

Leo: And communicating. That's a big piece of it because being able to say to Erynn, “I need 15 minutes” can be the most meaningful part of that process so that she knows I've clearly communicated “This is what I'm need right now.” Or even Hudson is old enough now, our son is old enough now, where I can say “This is what's going on for me. I need this amount of time and we'll get to whatever it is that you want to talk about or whatever it is you want to do.” You know, we've given him a timeframe to work with and that can really help. Being able to put it out there. Clearly giving some parameters around it. And I'll say to the other piece of it for me is learning how to say I'm sorry when I don't do it well. That's not only healing for me, but for the relationships that I'm trying to maintain here at home. And that's a hard part.

Lauren: What's the hardest part about it?

Leo: It's a pride issue I think. And, and guilt, you know, it's all the ugly stuff that comes with that that you don't want to visit. You don't want to be down in and you want to… well, some of us, there are the people in life I think who tend to blame others and it's, it's always very outward. And then there's the people who take it all inside and it's all because of me. I can sometimes go back and forth between those when I'm down in that guilty place and nobody likes that. So I struggle with, “Well, if they knew better, you know. They already did know this is what I need and this is what I'm dealing with. How selfish of them” … irrational thinking. Although that doesn't come along often. Of course, I don't think my family is selfish for wanting to spend time with me. I would much rather have that than something else. But that's the hard part for me is just being able to humble myself enough to say “I'm sorry I did it wrong.”

Lauren: Hm.

Erynn: And I think a big thing for me, I have come a very long way in this, but it's something that I think I'll just be continually learning forever is um, especially when we were in that long period of crisis. Um, he was sick and he had like, you know, his needs really needed to come first because it was it sometimes life and death. So it felt very selfish for me to ask for anything, you know, I just was like, “We're just going to focus on whatever he needs and put everything first.” But I think I gave so much for so long that I realized after a while that I had lost myself. And so being able to say “I need something from you” was okay. I had to learn to be able to communicate that without feeling like I had to be guilty about it.

Lauren: How did you get to that place?

Erynn: Desperation. Realizing that I was deeply unhappy and, um, like that I just needed a minute because like my husband was so small and so that was a point where like childcare was a really big thing and we weren't getting a lot of time with each other and he wasn't able to… I mean just making it through the work day was all he could do a lot of the time. So I'm just saying like, “I just need us to have some time to sit and talk” or I just, I mean even simple things, um, or like “I need to get out of the house. I have only had a two year old to talk to for three weeks. Let me just go do something for the night.” To realize that it's not selfish for me to have needs as well. So, I think not being in crisis has made that easier already. And having a five year old who doesn't need as much has also made that easier. But, so I think the whole thing is a process that's just made it easier just to live in life in general. But um, I think I did get to the place where I was... I tend to do that anyway. I tend to stuff everything down and just continue giving and giving and giving until I can't anymore. And so learning to come out of that and say “I don't have to wait until I get to a place where I'm just completely dry.” I can ask earlier. I can say, “Hey, you know, it would be helpful right now…” and that doesn't have to be selfish because to get what you need is the best way to be able to give back, I think.

Leo: So I think that's a big hidden piece of living with chronic health challenges, the emotional toll. Because I know for me there are times where I've had to say “I'm feeling these emotions and I can't tell you why and I'm saying that to give myself room to make some mistakes here and I know what my emotional journey is,” but your physical wellness really can send your emotions on a rollercoaster ride that you didn't ask for. But that it does the same thing to your loved ones and the people in this journey with you and it's sometimes really hard to snap out of your own bubble of an experience to see how your family is being impacted. Learning to look at that as a thing to attack together instead of attacking each other about that thing has been a really big piece of it.

Lauren: [explosion noise] That's my mind being blown. You said it in such a succinct way. And I think, Leo, if you could go, if you could go back in time to a moment when Erynn was alone, struggling with “Do I bring up my needs or not?” and you could just kind of sit with her and tell that old version of her how you see her or what you want her to know. What would you say?

Leo: I think that I would just hold her. I don't think she wanted to hear anything. I think just holding her would tell her what she needed to know. It was really simple and really hard to do.

Lauren: Back then it was hard.

Leo: It was, you know, she talks about it as being in crisis and I think that I see it that way too. But you don't know how deep down in it you are sometimes until you're out of it. And that was true for us. I think I was progressively getting sick for so many years and we saw everything else as the cause of our problems until--not even just the diagnosis--but until we were really on the other side of it. And then we started to see what life was like when you weren't down in that. Just because I could make it past 2:00 in the day or because my thinking wasn't so irrational anymore. It wasn't so sporadically... I wasn't attacking people for no reason, you know. There was all of that and I think coming out of that really helped us put that into perspective. We can, we at that poInt, and we're still learning this, we're able to say “That's illness, this is just a real thing that we need to deal with over here that maybe isn't illness related.”

Erynn: [laugher] This is just me and my thin[?]. This is just me being a selfish person. Yeah, there's, I mean there's plenty of that. I think getting married is one of the quickest ways to realize what a selfish, hideous person you can be. [laughter] There are also in marriage, lots of opportunities to learn that and combat it or to dig in deep. So I think we've had to really learn to open up all the yucky parts and, and seeIng what needs to be cleaned out and, and what is really something that we need to hold onto.

Lauren: What does it mean to you to have a fulfilling relationship and has that changed because of the health challenge journey?

Leo: I think for me to have a fulfilling relationship is to live our lives together as a couple and as a family in such a way that no matter what thing changes or comes, the basics of what makes us a solid family is unshaken and that's my love for you all…. How much I value you and how big you are in my world and that nothing else would ever be bigger. I think that's the big thing for me and, because the future is uncertain, being able to leave a legacy, however long I get to be here, that outlasts me. Then when you look back at it, I don't want to be one of those people that have the horrible obituary. I want you to say that the way that I loved you was good. You were really fulfilled in that part that I played in.

Erynn: I think that, to me, a fulfilling relationship really is learning to be able to be completely yourself in it. It's not about being something to each other as much as it's about being able to be fully us and share that with each other. Just to be able to feel like I'm fully me and I'm able to be who I want to be and see you for who you truly are and grow together in that. Um, and yeah, sure, that is something that's always going to be affected by health because your health is part of who you are, but it's not a defining thing, you know. So for you to be able to be who you are on your healthy days when we're out hiking in enjoying the really good times as a family and to be who you are when you feel like crap and it makes you angry because you get to be angry about it because, you know, this isn't what we signed up for. This isn't what anybody one. but for that to just make us stronger, I think. And for our love to continue to grow through all of that, the good thIngs and the bad things.

Lauren: That's beautiful. I'm feeling very transcended as a result of these conversations. I'm just kind of sitting over here like I feel like there's a little sparkly glitter around me and I'm just sitting here like, “Do you guys see how beautiful you are? I don't know if you do.” I'm just over here like… in awe. So the second question is “Do you have any funny stories as a couple related to health body journey stuff?”

Leo: Well, we were talking earlier about how funny moments about the transplant-related things seem to be kind of lost in some of the intensity of the other emotions that come along with that for me. But there are some moments that stands out more with the Crohn's thing. I don't know why, maybe it's the fact that potty humor is always kind of funny, but I do remember this time where we were getting ready to go. I was going in for a colonoscopy and I get those every two years now. And it is a very fun experience [sarcasm]. And for folks who haven't had a colonoscopy the night before, they gave you a preparation that… and there's really no better way to say it. It gives you really, really explosive diarrhea. I mean it just completely cleans out your body. And so I had been having that medication the night before. We were getting up early the next morning to go in for an early colonoscopy and what you try to do, and I think anybody who's had a colonoscopy can say the same thing, you try your best to go to the bathroom before you leave because when you've had that dose of medication, when you need to go, you really need to go. And we were driving about 25 minutes to get to the hospital to do the procedure.

Erynn: I don't even know how early. 5:00 AM, something like that.

Leo: Yeah, it was very early and that urge hits that I, I have to go and we are three minutes from the hospital to get the procedure done and we find a gas station that's open and I urgently run in and they're telling me we can't go here. We're not open yet. And I, I'm angry and like fussing at them and I'm like, “We don't have time for this, let's just go.” And so we started trying to make it to the hospital again. At this point, it’s absolutely an emergency.

Erynn: Yeah.

Leo: And so I'm telling her, “Just find a place. I need bushes, find me a house. I'm going to pull over in somebody's yard. I don't care. You keep a lookout. I'm going. And somehow by the grace of God we made it to the hospital without me having to catch a charge on the way.

Erynn: I think that maybe the neighborhood came right before the gas station. And maybe just the act of standing up and moving around just enough to make it the additional three minutes to the hospital. So we got to check in and they were like “Sir, can I…” And he was just gone. [laughter]

Leo: I finally did make it, but then there was something wonky about the toilet was one of those automated toilets. And so I'm sitting there trying my best to take care of business and it keeps flushing on me and spraying things back. And it was just all around a horrid experience and I mean, you kind of can't help but laugh because really the only other option is to cry, you know. It was, it was kind of a traumatic. It was the only colonoscopy I've ever had where I came that close to having an accident and having to explain to the staff, “This is your fault. You gave us those meds.” Probably my funniest memory when it comes to that.

Lauren. But you guys got through it together.

Erynn: We did. And that's one of the nice things too about being married is that like, you just have to give up all your rights to judge people. This is it, this is what you get… so that’s us.

Lauren: What do you have now as a couple that you might not have had without this health challenges?

Erynn: I think that, it’s like... it's confidence. We were talking to about people who jealously need to know what their spouse is doing all the time and say, “I don't want you to have friends of the opposite sex” and all that kind of thing. And we've never been like that. We are pretty easy going, we trust each other completely and so we don't have those sorts of issues. So there's never been a part of me that wondered if this was forever. Like if we were going to make it. When we made our vows, we met them and we knew that this is really like for real “Til death do us part not” just like “We'll give it a try.” Which seems to be kind of a pervasive thing in culture these days. Um, but I think the assurance that now we've actually seen what it looks like at its worst, you know, um, that we, that we can make it through the parts that are really hard. So it's one thing to, in theory, say “I'm going to be here at the end.” But when you see all of the real, actual hard things that are going to come up and you actually make it to the other side of that and know we can survive this. We have confidence in God and we have confidence in each other. So …

Leo: I think I agree with that. I think we have.. to me, it's if we were talking about a rubber band being stretched to the point of breaking, it's like… to me, the rubber band’s not really being stretched. We're just kind of in the situation together. There's no breaking point. There's no maximum to what we can handle so to speak. It's just all, “ow do we fix this one? How do we attack this issue? How do we figure this one out?” And I think that that wasn't something that we necessarily knew we were doing until we were doing it.

Lauren: That’s so cool. There's a phrase that comes up for me a lot, which is “When we don't have control over the situation, let that be the case instead of fighting it.” And then asking the question, “Now what?” And that's kind of the essence of what I just heard you say is “Now what? Now what do we do?” It’s not “Oh no, let's kind of ruminate about how hard it is. It's more just like, okay, now we have a new thing to deal with and I trust that we can deal with it because we just have to figure out how we're going to do it.”

Erynn: And I think that's another place that faith comes into play for us because we know that none of any of this has surprised God. From the very beginning he knew exactly what was in store for us. Uh, we struggled with infertility for a lot of years. And so as we struggled, even with infertility, which may or may not have been because of medications and things related to Leo's illness... it could have been easy, I think, to really question whether God was good to us, you know? Um, but remembering that, but He does have good plans for us. And now, I mean, I have the proof of that in my amazing five year old who was a miracle. Just knowing that He's not ever surprised by anything, that He knows what the future holds and His plans are for our good and for His glory... ultimately makes me feel like whatever comes. It's something that we can handle together.

Lauren: That is so cool. Actually there's a final... I don't know if you know about this. There's this last fill in the blanks thing where I ask people to finish the sentence, but this one you'll each have a chance to finish it and it's a little slightly different, which is finish this sentence…. “This is not what we ordered…”

Erynn: I'm just thinking about, you know, being in a restaurant and not getting what you want, but finding a new kind of thing that you wouldn't have tried otherwise. Uh, so this isn't what I ordered, but I don't know, it can still be good. It’s not what I would have planned.

Leo: It's good. I think that even though this isn't what we ordered, as far as it's up to me, I refuse to this shape our future as a family into anything that we don't welcome. We're going to make it something that counts for something good no matter what.

Lauren: Thank you both so much for joining me, but really for joining each other in front of listeners, you know, for being yourselves in public.

Leo: Yeah. Well, thank you for having us into for the opportunity.

Lauren: It was absolutely a treat for me.