← A Place of Yes | A Grief Podcast 
A Place of Yes | A Grief Podcast
Told She Would Die at 18 — Then She Got a Second Chance at Life
00:59:44
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- [00:00]
A
Hi, I'm Heather Straughter and this is a place of yes. In each episode we have honest conversations about grief, the messy parts, the unexpected moments, and the ways we begin to heal through heartfelt stories and expert advice. My hope is to offer you comfort, connection, and a reminder that you don't have to navigate this alone. Today I'm joined by Erin Mark, a keynote and TEDx speaker who has spent her life navigating uncertainty in a way most people never have to. Born with cystic fibrosis and told at 5 years old that she likely wouldn't live past 18, Erin grew up with a perspective on time, grief, and resilience that continues to shape how she shows up in the world today. In this conversation, Erin shares what it was like to grow up knowing her life might be short, how she learned to hold both joy and grief at the same time, and what it meant to face end stage illness in her 30s after already surpassing the life she thought she'd have. We talk about advocating for yourself, the power of the people who refuse to give up on you, and how her life changed after a breakthrough treatment gave her more time. It's raw perspective, shifting and grounding, and I'm grateful to share it with you. So I'm here today with Erin Mark. She is a keynote speaker, a TEDx speaker, and I love her focus on her talks. She talks about helping people realize that they can in fact, navigate uncertainty. And I think that that is something that is very universal. Whether we're talking grief or not grief, people get nervous, they get insecure, and I love that you are out there kind of preaching to people that they are capable of more than they think. So I love that. Welcome to the show, Erin. Thank you for being here.
- [01:41]
B
Thank you for having me. I'm excited to be here.
- [01:44]
A
So, Erin, we're going to get right into it. Your story's a little bit different than what we've talked about, but I think it's going to be so valuable to our audience. You were born with cystic fibrosis. Just to kick off, can you share a little bit about that for those who might not know?
- [02:01]
B
Yeah, sure. So cystic fibrosis is a fatal illness. When I was born back in 1984, dating myself very long time ago, the life expectancy was 18 years old. And CF is a disease that affects both the lungs and the pancreas, essentially deteriorates your body over time. Your lung function drops drastically from massive infections over the years that you unfortunately can't clear your pancreas. That's affected as well. Some people have just the lung issue, some folks just have a pancreas issue. I am very lucky to have both. I am the luckiest, unlucky person to have both. And I have a double delta 508 gene and it's the most common gene of cystic fibrosis. And essentially most have the lung and pancreas issue.
- [02:53]
A
So you. One of the things that really since we talked, since I heard your story that has just stood out is you were five years old and you heard overheard a conversation with your parents where you were where they were told or where, where you heard that you might not live past 18. And that just sat with me because I just can't. Like, how did you process that? What was that moment like? Did you even know what that meant at that time?
- [03:23]
B
Yeah, yeah. Well, I was listening to my dad on this hushed call. What I didn't realize was he was talking about make a wish coming to our house the next day. And he must have been on the phone with a friend and he, I heard him say that my life expectancy was 18. And he said it very quietly. But at five years old, I could count backwards knowing that I was five. And you know, when most kids are that age, they're dreaming about what they want to be when they grow up, they're dreaming about their future. And instantly at five, in whatever way a five year old could, I had to process that I wouldn't have a future and I would be on limited time from five years old on. So the next 13 years per se of my life would be different than everybody else's.
- [04:14]
A
It's such a, you know, so it's interesting to me that right away, like you kind of knew to count backwards. I try to think of myself at 5 and I'm like, I wonder. It's just so much to navigate and to process. And, and like you said, most children are thinking about like, oh, you know, I remember telling everyone I wanted to be like a firewoman when I grew up. Like, you know what I mean? Like, you're just thinking of like, what?
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B
Right.
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A
You don't know, you know, so. And most children assume that they have all the time in the world. Right. Because a lot of times you haven't had to deal with grief or process things. So you've described having to grieve the idea of a typical future.
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B
Yes.
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A
And what did that look like? You know, both as like a 5, 6, 7 year old, but also as a teenager as just someone and approaching this sort of end Date almost like, how. How did you live your life?
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B
I knew that I had to cram as much joy and urgency into my life as possible. And starting at 5, I'll kind of tell you a funny story. The day after Make a Wish did end up coming to my house. And I didn't fully understand what that meant at the time. I. Again, I'm trying to process everything within those past 24 hours, but I knew it had something to do with being sick enough to get a wish. And did you even know what Make
- [05:33]
A
a Wish was like? Did you know, Was it a. I
- [05:36]
B
had no clue what it was. I didn't know until. So it was already pre arranged that I was gonna go to Disney World because back in 1989 that's where most kids would go. And I didn't realize this until this man from Make a Wish leaned down to ask Aaron, if you could have one wish to go anywhere in the world wish, where would it be? Well, Heather, without hesitation I shouted tahiti. And the entire room went silent. I was apparently a very exotic five year old.
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A
That's pretty awesome.
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B
Pretty awesome, right? I think we. So the room went silent and then after a couple seconds that same man like nervously cleared his throat and was like, how about Disney World? And I go, well, are there palm trees there? We were learning about palm trees that week in kindergarten. So the entire room shouted yes. So I like to say I grudgingly accepted the palm trees and a chance to meet Mickey and Cinderella. But if this kind of gives you an idea to answer your question, I remember thinking Tahiti will have to wait. But not too long, because even at five, I knew I was on limited time and birthdays felt different. I, you think would be maybe the opposite where the birthday would be like a death sentence, every birthday kind of checking them off. But Heather, I celebrated my birthdays because I knew that I would only get so many and I was an old soul before I would ever become an old soul. And I think a lot of times when you speak with people who are dying in hospice, they have the same sentiments that I did when I knew my life would be limited. Except I learned that very uniquely from a young age. And it wasn't so much sadness, Heather, it was the joy that I was just going to get 13 birthdays and I was gonna make the most out of those birthdays. And I don't mean that to sound cheesy. I just mean it to sound like I want joy for those 13 years no matter what happened.
- [07:54]
A
I, like, I literally have a Little bit of, like, chills hearing you talk. Because I think that it's almost like if we could bottle that enthusiasm and that energy, because it's. It's so if you're going to have X amount, I mean, that attitude is just so correct, right? Like, why not embrace them and make it the most? And why, whether it's time with yourself or time with, you know, people. I know that loss has taught me that lesson. I learned it the hard way, not as young and not about myself, but when I lost Jake, I was like, wait a minute. We cannot live in the sadness. We have to still live. And to me, it was about honoring him. But it was also about, like, wait, if you can lose somebody on a random Wednesday, like, I lost Jake, or if you can find out at 5 years old and that, wait, you might be on this, like, timeline, then you've got to figure out how to live with joy. And I just, I think, you know, I have a quote that you wrote in kind of the pre survey where you said, squeeze as much life, laughter, and meaning as possible. And I kind of. I'm like, that's like a words to live by 100% for everybody, you know, it really is. And I think for our listeners who are navigating grief after loss or whatever kind of grief they're navigating, I love that, and I love that it sort of innately came from you. But, like, how do you. How did you manage to keep that front and center? Because I'm sure it wasn't easy.
- [09:24]
B
It wasn't always easy. And I had to practice realistic resilience. Because I think a lot of times when you're going through grief or you're grieving or going through setbacks and struggles, it's not always easy. See, I would be lying if I said even though I was taking every day by the horns and squeezing that joy, there weren't some days that I broke down. There were days that I felt like I was breathing through a straw, and especially when my life was coming to an end, that I was struggling. But I tried to reset that to say, I still have another 24 hours. How can I make the most out of those 24 hours? And what was really important for me was actually who I surrounded myself with as well. Because I think there can be, I don't want to say an issue, but a problem with people who are always the. But at least people. Because when you are struggling and you are going through your own grief journey, whether it's for yourself or with somebody else, you Want somebody to lean on when you are having your bad days. Because life isn't fair, unfortunately. And the sooner you realize that, the better. I realized that at 5, but I also realized I almost had a gift knowing that it wasn't going to be fair so young and knowing that my future was going to be so uncertain. And I always say, especially with those people who helped me out along the way for those bad days, those setbacks, those struggles, those to pick me up and reset me as well. And I'll never forget the people that knew me when I always think now that. And we can get to that about my, you know, life being said to the last moment. But there's always those people who knew you. I'm sure you feel that way in a way, Jake, who saw you as a completely different person or in a different phase of your life. Right. And don't you feel like those people that you hold so dear? And that's how I got through a lot of those struggles, was because I leaned on others when I needed it. But I also still tried to bring joy to every situation, despite having those setbacks. So it's a weird, right? It's kind of like a black and white thing, but it's like somewhere in the middle. Okay. Yeah.
- [11:49]
A
You know, are so speaking my language 100%. Like, Aaron, when you say, like, the people who knew you. When, like, I talk about that, I like, write about that, I think about that, like, because it is. It's like I sort of look at my life, right? Like, and there's the people who knew me as Jake's mom and then people who knew me otherwise. And I think because Jake was only around for four years, that those people will always. There's very little, you know, when I think of, you know, people who I trusted with Jake, who watched Jake, like, you know, Kate, who was on this show before, and we joked, we had two Kates, so I would call them Kate 1 and Kate 2, which sounds ridiculous, but we would always like, I love it. Because Ethan was little. And Ethan would be like, wait, which Kate's coming over? So, like, which Kate is this? Which Kate's coming? And I mean, but both of them, like, literally can do no wrong in my life.
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B
You know what I mean?
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A
Because they just were important people at that time and it's just a different life. Right. Like, so they knew you at a time. I don't know that just the part partly needs to be preserved. And it's.
- [12:53]
B
Yes, that's such a good way to put it. That needs to Be. I love that you said that. Because I think sometimes too, afterwards, the after that season ends, right? We easily forget that. We can easily forget that when life is moving so fast and life moves on. But it's those people who held your hand who knew everything, that there's just something so special. And I think that's a lesson to everybody who may be going through something hard. Like, look for those helpers, right? Like, I forget who said that, but.
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A
Mister Rogers.
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B
Mister Rogers. Mister Rogers. Shout out mister Rogers, right? Like, look for those helpers in your life because they are going to be there through those setbacks and struggle for you when you are allowed to be mad. There were days, Heather, I was mad. So I, you know, even though I was joyful. You can hold two emotions at the same time. And I think people don't realize that they feel guilty for feeling one emotion or another. And I don't know if you felt that with Jake, even when you had a good day, but you knew, right? Maybe what was really going on. And maybe he was in pain and struggling, but something made him smile or you had a really good cup of coffee. It's these little things. You were allowed to experience that joy as well. So I tried to just focus on that more than those setbacks and struggle.
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A
It took me so many years to sort of recognize that. And now, like, my husband will laugh when we're talking about this because he's like, yes, Heather, I know two things can be true. Like, but because I'm, like, obsessed with that idea of. Cause I did not know it for so long, or I lived in that, wait, is it okay for me to have this joy? Or I would feel guilty about the joy for so long, when really, I can look back at moments when I really was embracing both things, but I didn't have the language for it, kind of. And when you say that, I remember, and I think I've shared this on the show before, but there was a time when we were adjusting Jake's medications. Cause he was just so zonked all the time. There was no expression. It was kind of rough. He was doing well otherwise because the medicine was controlling stuff. But, like, we lost our little boy. Like, there was no smirk. There was no, like, smile. So we were weaning him off some of the meds. And with that came a lot more expression. Some of it was he was frankly pissed off about things. So he was, like, letting us know he was, like, screaming bloody murder. But there was a moment, like, the first time in months that he had cried that Brian and I were like giddy and I remember standing on our back deck and he's screaming and we're like, hehe. Like we were so happy and it was such a twist moment because we were so like, of course we were upset that he was upset, but we were also so joyful because I was like, he's feeling things again. And it's just everything is so weird, you know, like it's like when you're balancing all of these things.
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B
Yeah.
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A
So I want to jump ahead a little bit because we're, there's so much to talk about, but I want to, I want the audience to know what we know. So you obviously made it past 18.
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B
I'm not a ghost.
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A
And. But in your 30s, you, your health declined significantly. You had entered end stage illness.
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B
Yeah.
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A
Can you talk a little bit about that time both in how, how what it felt like to live in that post 18, like when you sort of, you know, there was, I don't want to say a deadline or a date, but there was kind of this date and then all of a sudden what was it like to be 19, to be 20, to be like, hey, these are, are they extra? And then to get to this point further than you thought, but still then have to face end stage illness?
- [16:32]
B
Yeah, absolutely. So when I reached 18, it was also the same time I was graduating high school and I had an opportunity at that point to go to college and dream. It was still a point where I was stable with my illness. I was very lucky. Even though I was in and out of hospitals throughout childhood and teenage years. I had several hours of treatments I would have to do a day. It was typically two hours in the morning and one hour at night. And it was just a way of life for me. And that's all I ever knew. But for me, I looked at it as CF1 those three hours and I was going to be able to have the next right 21 hours of the day. And that's the way I always looked at it. And it was interesting because all of my friends knew about my disease because I'd go to sleepovers, right. I'd have to either come late or leave early. And it was just a way of life that I was used to. It was always this time ticker and this like elephant in the room in the back of my head knowing my time may be limited, but I wasn't feeling that As I started to get into 16, 17, 18, there was a little bit of brevity, I guess in that. So I went to College and then I went for a year and then got very sick and had to leave. And that was kind of when everything started to really kick in as far as my lung function dropping, getting infections. And I never went back to college because I had, I was in and out of the hospital. I had almost I call like a break in my mid-20s where it was just maintenance IV antibiotics a couple of times a year. Those treatments grew from two hours, from three hours a day to four hours a day. Okay. I remember end up meeting my husband and he did not realize at the time I'm a very boisterous person even when I have this terminal illness because again from five, I wasn't letting that dull me. And I think it took him a while to actually realize like what was going on. But very lucky he still seriousness of it. Like the right like seriousness of it.
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A
You were like, you lived with it, so you were light and so it must not be kind of thing.
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B
Yeah, exactly. Well, the first time I had to that he saw I had to go into the hospital to get a PICC line. And I'm sure you might know what a PICC line is, but listeners might not know. It's a long term IV that's threaded from your arm to your heart. I've had several over the years, 40 plus. So it was just maintenance for me when any time I was immune to all oral and IV antibiotics or I'm sorry, oral antibiotics. So that's why I had to start the IV antibiotics. Anyways, we ended up getting married and then it was. And it was great for a while. Maintenance treatments was my way of life and he accepted that. But at, you know, for five, that road ran out in 2017 and every day it felt as though I was drowning and my lungs were failing fast. And I remember bringing with me some research list of ideas, different antibiotic combinations that I knew other people with CF were trying to. My doctor in the middle of that, he cut me off and said, well, don't get emotional, but I'm the expert and if I thought it were worth trying, I'd be the one to suggest it. Then Heather, he said something I'll never forget. You know, you should feel lucky for all the extra years you had. You should feel good about that. In that moment I realized he'd given up on me. And I it's like that five year old, right, who got those bonus years is what I call them. It was finally coming to the end, my bonus years past 18. And I walked out of that clinic like a ghost And I got in my car and I broke down and. And it wasn't because I was weak. It was because I was so dismissed and knowing that someone gave up. But at that moment, I paused and you know that scene in the movie where you're, like, yelling at the main character, like, yelling at Rocky Balboa, like, get up. Find another way. You got this advocate for yourself. Except that was coming from inside my own head. So I called every CF clinic I could drive to that would take my insurance. And a couple years later. I'm sorry, a couple years. A couple weeks later, I walked into Dr. Patricia Walker's office in Manhattan. She read my chart, looked me in the eye and said, I can't promise anything, but we'll try everything we can. And I won't give up on you.
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A
The power that the doctors have, not just in their knowledge of medical medicines and trials and stuff, but the power they have with their words and their bedside manner. And how dare someone give up when you're still fighting, right? Like. And then. But then to find the person you're supposed to be with who's like, you know what? I can't promise you, but I'm here with you. Let's give it a go. Because that is. It just. It's so frustrating to have to. Like you said, to have to give yourself that pep talk a hundred percent of the time, all the time. Right.
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B
Like, you want someone feeling well to begin with. Right. And you're not. Cause you are not healthy to be able. You almost don't have that. You don't have the endless resilience. You don't have the extra give. I always would think, too. Like, I would call my insurance company. I think about this in a way. You call your insurance company, you try to get things approved, you know, because you've dealt with that, I'm sure.
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A
Yes.
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B
And you are not the kind of person, at least I'm not. I'm sure you're not. Where you give people grace, right? You don't want to make anybody feel awful. But guess what? When they start denying durable medical equipment prescriptions, making you jump through hoops, you get angry because it's masked. It's your fear that's coming out. And for me, I had to try to maintain a cool head because I couldn't make myself sicker. I didn't have the energy. And, yeah. To have that doctor say to me, you should feel lucky for all these extra years, I thought to myself, in what world, like, I wanted to fight. I knew my diagnosis. I Wasn't rose colored glasses. I just wanted someone to say, I got you to the end, let's try something. And Dr. Walker was like, we'll try everything we can. And that's why two years later when I entered end life stage and I was dying, I was at peace because I knew I did everything I could to live. That five year old who wanted to go to Tahiti, she did everything she could in her life to make sure she got herself to that point where it was my decision when I wanted to quote, unquote, give up in, in a way, right, that my body, I shouldn't say I was giving up, my body was giving up, but I tried everything I could. I wasn't going to have any regrets, that is.
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A
And, and you need that person, right? Like you need, you can. And we've talked about that and I want to come back to that in a little bit like the people we surround ourselves with and the people who knew us at different stages because I do think, you know, whether we call them helpers or like whatever we call them, they're just so like important. But I want to stick with this. So like, so you, you were in your 30s, you had Dr. Walker for a couple years and she, you know, you, you, like you said you had come to terms or had come to peace. And I like the differentiation of like you hadn't given up, but you hadn't given up, but you knew your body and that awareness, like that self awareness and for people listening who are seeing that in others, right? So I think your perspective is so unique for this show because you're talking about yourself. But a lot of us experience that like when is a time to pull back the fight for someone else because they're, do you know what I mean? Like it's that there's like a little
- [24:31]
B
bit of a dance, it's this little dance. And you don't want to ever give up on somebody because you, you will never forgive yourself. You think? I think if you're giving up, but there's also a way to honor that person who you knew, who has fought and whose body is tired. And I think sometimes it's more about the caregiver at the very end fighting. And I don't mean this in a negative way at all. I just mean in the person because it's a human thing, right? We want to do whatever we can to fight to the end. We love this person, we've seen this person, we cared about this person, whether it's a child, a spouse, right? The other Family member, parent. But there is a time where you know that their body is just giving up. So the best thing you could do is just support them and make them comfortable. But you have to get to that point. It is not at the same point.
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A
Yeah, exactly.
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B
And sometimes you're not at that same point and. And that's okay. And I think as somebody who has this perspective, because it is me and I have seen that side of it. It's such a hard decision to make. It was a hard decision to make for myself because I knew I would still continue to fight. I wouldn't waste any day that was given. But there was a point I thought, okay, what can I do today? What can I do in these next 24 hours that I won't regret? And sometimes it was something so little, like going to get a cup of coffee and I was still doing some speaking while I was dying because I was on a mission to leave people better than when I found them. And it wasn't pretty some days. But you know what? For me, I was gonna go out swinging, you know, my body wasn't.
- [26:24]
A
I just, I just love that. I just love that. And you know, it's so, it's so powerful to hear you talk about it because to have that like self awareness and to have that ability and to stay true. And I like how you said some days it's small. Right. Like every day. I think that's such a lesson that I've learned in like sort of my own grief journey, is that sometimes you just have the way you honor yourself or the way you honor the person you lost or however that is, is by. Sometimes they're small moments. Everything doesn't have to be a huge moment like when you're saying you're squeezing life, you know, as much life and laughter and meaning as possible. That doesn't mean every day is a day in Tahiti. It means that some days it's just. It's very different. Right. And I just love that you gotta
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B
find your own Tahiti every day.
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A
Yeah, exactly. So eventually, I believe it's Dr. Walker, you gotta break through medicine. Right? Is that sort of what happened? So you, you are in your NC stage, end stage, and then all of a sudden, hey, here's one more shot. Like, is that sort of what happened?
- [27:22]
B
So this drug was already in trials and being tested. I was unable to get it because through compassionate care, because my lung function was so low. And I could have skewed the numbers for the FDA if they gave it to me. Yeah, that's Just what we're. Yeah. So I wasn't able to get it. And I knew it was coming. I was on a iteration of it, which was called Sendeco at the time, and perhaps it kept me a tiny bit stable for the years I was on it. But it definitely wasn't this drug called Trikafta that I knew was coming. So it got approved. I knew that. I was cautiously optimistic because when your lung function is so low, the lungs are an organ that are. It is hard to regenerate the damage that has been done to them. It got approved on October 21, 2019. I got a text immediately from Dr. Walker. I'm sure she texted all. But I already knew about it because I had an alert on it. But what you don't. But what you don't realize is you probably realize and other people. But I think the majority of people don't realize that you don't get it that day. And so I was waiting. And then it has to go through insurance and approval and all of that. So I remember it was November 8th. It was my husband's birthday. We were down in New York City. And I again, didn't know if I was going to be hospitalized again because I have something also called hemoptysis from this lung damage with cystic fibrosis and hemoptysis is coughing up blood. And there were points there, which is what was actually throwing me in to the end stage of illnesses because of that. And I was speaking that night at the Yale Club.
- [29:12]
A
Of course you were.
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B
My doctor's like, they're crazy. It's just like. And this is kind of a fun fact, I have a little side story, but maybe you'll appreciate this as well. So I remember, like, my doctor and my social worker on the phone with my insurance company saying, we have to get this approved. I heard my social worker say, if we don't get this approved, we don't know how much time she has left. Which I knew anyways.
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A
Yep.
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B
So my doctor said, well, why don't you go rest at the hotel? You know, you crazy person. Cause I know you're speaking tonight, and I'm a huge peloton writer. Huge.
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A
Thank you. Love that.
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B
I love this for us right now. I don't know if we've heard. I don't think we talked about this.
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A
No. But I go to the studio in New York whenever I can. I love it.
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B
Heather, we need to go together. Okay. I would love that. I'm really glad I'm telling this story. Story time. Then for us, Heather and anybody else who's peloton listeners. Listeners. So there were times when, especially then when I was end of life, I could only pedal for 5, 10 minutes at a time. I mean, my resistance was probably at 5 or 10. Right. It wasn't going to be. But that breathlessness for me was a privilege.
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A
Yes.
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B
And it was how I was able to do some of those treatments, hooked up to my nebulizers or my picc line where I could get some sort of motion to help my lungs. There's a whole story about exercise. We have to get into that right now with me. But that's so with the peloton. And you know, those instructors, they are right. Like, who's your favorite? Put it in my veins. Okay. So Robin Arzan is, I would say, my favorite. It's hard to pick. It's like, who's your favorite child?
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A
I know.
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B
I love Ali. Love Cody Rigsby for a good time. I mean, I love Cody. Who's your favorite? Jen Sherman's awesome.
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A
So I'm a huge. I go in kicks, right? Like, for a long time, I was kind of like a Jess King girl. And then I kind of shifted and totally Jen Sherman. Now, like, I just feel like she is my vibe right now. Love Robin, but I'm not always in the mood for, like, when you don't like the yellow on yellow.
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B
Like, I don't need this triple yellow alert, girl. Sunday, I'm like, girl, I got, like, 50 lung function. I can't have your yellow alert today.
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A
I was like, I can't do that. Yeah. And Cody, I just love, like, Cody, you're gonna get a workout and you're just gonna, like, it's going to fly by because you don't know what comes out of his mouth. And sometimes I just need that. So I'm like, I love it. And I do love to
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B
go in, like, sports. Right. Alex Toussaint also is, like, a personal life coach that we all need. We.
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A
Brian and I took a running class with him, like, in the studio.
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B
You did.
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A
And in the running classes, there are only, like, 16 treadmills. And we were sort of front and center. I was like, what? I could not walk for days because, of course, you can't be lame when you're there. And I was. I'm not a runner anymore. Like, I was like, what is happening? All right, we digress. But we digress.
- [31:57]
B
Palatine maybe a sponsor of the podcast. Okay. Anyways, so I. Robin had a class. Oh, side note, there was a picture of me At Mount Sinai that one of the doctors took while I was doing an IV treatment with me. They. I made the wheel of bike in not a peloton. They didn't have that kind of money on Mount Sinai. And it was funny. I tagged peloton and Robin re shared it. And we'd exchanged a couple messages here and there, like years ago.
- [32:23]
A
I love that. I love that.
- [32:24]
B
And she was having a live class that day. And it was when they were in the 23rd street location. I don't know if you ever went to that one. Okay, so you know, super small studio.
- [32:34]
A
Yep, yep.
- [32:34]
B
So I tell my doctor, well, I'm gonna go take the peloton class. And the look on my husband's face was like, are you insane? When you're dying, you have a bucket list, people. And I wanted to take a live peloton class again, joy and urgency, since I was 5. So my doctor's like, do not pedal. Which I wasn't. It's funny. I made sure I got a bike right in the back so I couldn't be like an all star like you in an Alex Toussaint tread. But I was like, okay. So I go. And you know, Robin, she's kind of scary. I'm like, I can't be late to run into this class. So my husband and I are waiting. He's annoyed. He can't believe that I want to do this tonight.
- [33:11]
A
Yeah.
- [33:12]
B
My. My phone rings. It is Walgreens mail order pharmacy. The woman picks. I pick up and she's like, hi, I'm so and so from Walgreens. I have an order for trikafta to be delivered to you within the next seven days. Can we set this up? I say to her, can we hurry up? I'm going to go into a peloton class. She starts laughing hysterically. She goes, oh, my God, I love peloton. What instructor are you going? It's like a cult. And I say, oh, I'm going to Robin's class. It's this 30 minute hit ride. And she goes, oh my God. So we start talking and she's setting up everything. She goes, listen, this was supposed to be. I have a seven day delivery. I'm going to overnight this to you. Peloton member to peloton member.
- [34:06]
A
Amazing. Amazing.
- [34:07]
B
I got home the next day, it was there. It was on my doorstep. I am telling you right now, what if I. I don't want to even think about it. But I don't know. Everything happens for a reason and not to be cheesy but what if it was seven days and I wasn't here to receive it? It's just things work out miraculously, so. Shout out, peloton. I should share this story with them.
- [34:31]
A
I was gonna say absolutely.
- [34:32]
B
We should tag them.
- [34:34]
A
It is so. I mean, but it's such a testament. And I totally get it. Cause I'm always like, I'm the queen of like the cliche sometimes, right? But I always think that that is. They're cliches for a reason and everything falls into place, right? And people. I do believe that people come into your life and they're, you know, she's like, let me overnight that. And then it's there. And here we are having this conversation all these years later because of. I mean, for so many reasons. Not because, you know, I'd like not to lighten the story, but it is that. That's a factor of it, right? It is a factor of it. Yeah.
- [35:09]
B
The silliness and the craziness of me. Because I'm delusional and I'm like, yeah, I can. I'm into life. Let's go do a 30 minute hit ride.
- [35:16]
A
What?
- [35:16]
B
But what if I didn't? What if I was in that ride and my phone went off? Yes, I probably would have left, right? But who knows, right? What if I went back to the hotel to rest and it was seven days out? I don't know. Right. It's just these things. I think nothing is a coincidence or, I mean, I think nothing is an accident. Nothing is an accident. And, yeah, so I took it the next day, that pill, and nothing happened immediately, which I knew that was not going to happen, but it was over the next week, I started to purge a lot of junk in my lungs. Okay. And.
- [35:50]
A
And so I said, that's how that was what we're hoping were going to happen. Okay?
- [35:54]
B
That's what we were hoping was going to happen. And just because I was still, you know, older, I wasn't going to probably regenerate this lung function, but it would maybe help it increase little by little with that as well. Because I was purging that junk in my lungs. And it was a week later. It was Saturday morning. I woke up on this cold, sunny November Saturday morning. And I remember I opened my eyes and for the very first time, I could take a deep breath. And it felt like I wasn't struggling anymore. One week, one week, I woke up my husband and I made him watch me take a deep breath to ask if I was doing it correctly. And he was overjoyed And I normally would have to go do those two hours of treatments. I would crawl to my nebulizer before anything for years and years, especially when it got really bad in my 30s. And I said, let's go out to breakfast, let's celebrate, let's get pancakes. And he said, sure, let me know when you're done with your treatment. We'll go. And Heather, for the first time, I could eat breakfast before treatments. And I remember sitting in that warm booth, shout out Cracker Barrel because they have really good blueberry pancakes. And just real. My husband's like, this is where you want to go? I was like, I love their blueberry pancakes. I remember sitting though, in that booth, being able to take deep breaths and looking out and I thought to myself, I might get to live. That five year old is going to get some extra bonus years and I might get this second chance at life.
- [37:33]
A
I have so much. I mean, there's so much with that. Right? And I just, I mean, one week. And I want to keep this, like, high note, but I do have this, like, question that since you said it's in the back of my head. So this medicine was available, but they didn't want you to have it so you wouldn't mess up the testing for the fda kind of.
- [37:56]
B
That's a, that's a, that's a. I think it's most drugs. It's not just that.
- [38:01]
A
So, like, it's not, it's not given to the people who need it most because you're still going through it. And I get that that's. The world works that way sometimes.
- [38:09]
B
I know how to.
- [38:12]
A
And I fixate on these weird things and maybe I fixate on them because, like, there were certain things that I just fought so hard for Jake, and I just couldn't get there. So, like, I hear stories like this and I can't move past certain things. Yeah, but how do you hit? Like, did you just come to terms with that or did you know that and it just was part of life? Like, did. How did you handle those setbacks when at the same time you're like, trying to find the joy and we talked about it, all can be true. But, like, yeah, were you. Especially when it works so well. Were you like, oh my God, I could have done this like two years ago? Or were you just okay with it because. Because it is what it is. Some things just are what they are.
- [38:50]
B
Some things are what they are. I was in the early trials, so there's been. There was three iterations of this Specific drug from my gen. And it was something called Orcambi Syndeco that led to Trikafta. I was in the trials for Orcambi from a one day one. So I knew because I had higher lung function then. So I think for me, I knew all of that. So that's why when I got to that point, to your point, it stinks. And it shouldn't be that way. To give someone like you are basing someone's life on skewing a number, but at the same time, you could skew numbers for the mass. For. For the mass population. It's so hard because the cutoff is so. But you're right. You're right. It's just like. But that's. They have these measures in place. And I don't agree with a lot of things for pharmaceuticals, but I will say for at least that I do understand right now the price tag and that comes with it. And insurance is a whole other thing when somebody's fighting for their life.
- [39:53]
A
But it's the correct response to an emotional one. Right? Like, it's sometimes like. And sometimes when you're feeling emotional about things as, you know, like, it's hard to, like, weave what is really just okay to be the way it. You know, I mean, so. I get it. I get it. I. I also. My other question is, I think about your husband, right? Like, and you've navigated such a journey with him, and how has that been, I mean, without being, like, personal.
- [40:20]
B
But, like, just get personal as you want.
- [40:23]
A
Like, I mean, what a. I would imagine. What a gift to be able to have someone. As we talk about these people who, you know, stood beside you and to have him. I. I'm assuming he is a. He's one of them, you know?
- [40:34]
B
Yes, he is 100%.
- [40:36]
A
And, and. And even I, I love the piece of, like, you go take that peloton class and he's kind of annoyed with you because he's like, what the hell are you doing? But he knows you and is like, okay, she's not gonna not do it, so let's just go with her.
- [40:48]
B
Like, yeah, exactly. He'd rather be there in case something happens, right? He is. It's funn together because opposites attract. And he is calm, cool, collective. I'm a little wild. And it works. Yeah. Optimistic. Yeah. And so for him, though, he's been that steady force that I need. He was my caretaker. But there's a lot of guilt that comes with that as a wife who is so sick. And I don't know what I would have done, Heather, without him. I mean, when I was doing those treatments and him being able to wait on me hand and foot when I couldn't. And you don't want that. Right? You don't want to be seen like that. But you need that support. And I think most people our age haven't gone through what we had to go through. They usually don't experience that till later in life. Now, I'm sure you could speak with you and your husband as well, dealing with Jake and other listeners who have a child. They are dealing with something that most. Right. Families don't have to. But I think that's where we could be at our strongest together. It breaks a lot of people. I have met, other people who live with my illness who are divorced and weren't so lucky. I feel so lucky to have my husband. But there was a lot of guilt associated with that as well. And one of the main pieces of guilt were not so much even taking care of me, because, of course, that was a huge factor in having this sick wife who you didn't know she was going to die. But it was not being able to have a family, to have kids. That was really hard for me in a struggle to not be able to be a mom and to give my husband a son or daughter. And I've struggled with that for a really long time. And. And even after my life was saved, we ended up looking for surrogacy and adoption. And it was just a lot more expensive than we realized, I think, at the time. And we had to almost have this conversation that, well, you know what? I get to live. And we can now have this life and build this life and do things that we never thought. Right. We would be able to do together because I'm here. Well, about a year after we talked to a surrogate agency, they called us and said they had a special situation where they had a surrogate who didn't want to be compensated but wanted to be able to give a family a baby who could not have one otherwise. So we ended up. I'll change her name. I'll say Jessica. Meeting her, she lived in a different state close to here. And she was like our angel. We were like, well, what's the catch? Right? Because there's always some catch.
- [43:41]
A
Yeah.
- [43:41]
B
The catch was she was a little older. She was around 38. And most with surrogacies, because you are paying so much money, it has to be within. It can't be like this geriatric pregnancy.
- [43:51]
A
Right.
- [43:51]
B
There's all These, like, checks and balances. And then it was also, well, we still had to pay for the agency fees. Okay. So it ended up we drowned our whole savings because we just thought, if this is our only shot to be able to be parents, I have all these bonus years. Let's do it. Every transfer failed. And it was hard. That guilt came back that I knew so well when I was sick at end of life. And I had to try to find that joy and that gratitude that I had worked so hard to preserve before holding two pieces. But I had a husband who never once made me feel guilty and never once made me feel that it was my problem, it was our problem. And I think those are the people that you need to lean on in those situations. There's also something else that's really important, I think. And it was also, even though I had that guilt and that sadness for my husband, I also had to say, well, I deserve to be happy, though. Why is it my. Why aren't I worth loving? That was hard to get to for me, too. But I had to get to that point because why aren't I worthy? I want love. Right. And my. Sometimes it just looks different. And I think it's a lot of messy. Adults are messy. There's a lot of messy emotions in that.
- [45:22]
A
There's so much, you know, and I think partially maybe when you're so used to sort of, I don't want to say putting other people first, but like handling your own emotion in one way and then someone else's and sometimes putting more weight on theirs than yours or whatever, like, finding that balance. I love what you said, though. Like, he never. It was not, like, your problem, it was our problem, you know, talking about these things. And I think especially for something like that, like, try, you know, giving, like, thinking you're not going to be able to have a family, then thinking, wait, oh, my God, we are like that. That up and down of emotions to be able to face that united and together. Yeah. I think that is, like, that's what, you know, that's the piece. Like, that is the piece when you, you know, when we're talking about the people, they're the people that make you feel like you're fighting together, even as opposed to fighting alone, you know, or, you know, like that. Like when you feel like you've got your village or you've got your people who you don't have to always use the right words because it's just understood.
- [46:27]
B
Yes. And I think with caretakers, when you're taking care of Your children or your. Your spouse.
- [46:32]
A
Right.
- [46:32]
B
You want people that are going to be on your side because somebody's bad day might be your partner's good day. And there's. You have to come to some kind of compromise in there to support each other and to know when each other needs a break. It was a little different for me because I. Patient. Right. I should have. You're right. I was the problem. It's me. Hi. I'm the problem. You know, it's just. It's hard. And it. For me now, seeing our life how it is, I could never imagine being here without him. And I'm very lucky to say that because I do recognize that not everybody has a partner in that way. And so you have to find other people. There will always be other people who are going to reach out to help you. You just have to ask for. And that's a whole other thing that's hard to ask for help. I don't know if you felt that way, but it's hard.
- [47:25]
A
It's still hard for me, like, about things that have nothing to do with anything. I still don't love asking for help about anything. Like, yeah, as I get older, I feel like I need it all the time. Half the time I can't make technology work. I need help with everything, but I'm still like, same feet in the sand.
- [47:37]
B
Yeah, right, right.
- [47:39]
A
I'm like, I don't need help. I wanna. So I wanna bring this back to grief a little bit because it's. Especially as you shared the. Like, you know, the transfers didn't work. Like, there's so much. Like there's. There's grief. To me, years ago, always was very, like, specific. Like, you only grieved at a time of loss or death. And then I recognized all these ways in which people grieve. And I've talked about it on the show so much and it's been so interesting and for me to see it because I also agree with it so much. One of the things that you said when we were. I don't know if we were talking before or when we were. When we were preparing for this, but you said grief doesn't disappear just because life moves forward. And I love that because it's very true, regardless of how you're interpreting it. But as you were. I was thinking of that, especially as you were sharing the story about the surrogacy and all of that, because, you know, grief changes and grief evolves and then other types of grief weigh in, but you learn to live alongside your grief. And what does that look like for you now at this. You know, I love how you've referred to these as your bonus years. You've got this different outlook now. You know, some of it's still the same as that five year old, but also there's been this evolution. So how do you, how do you live with all of that now?
- [48:59]
B
All of the things I think the most important thing I had to learn was walking alongside of it. And it doesn't mean that I can't have bad days still where I grieve, for example, not being able to be a mom. There are certain triggers that I realize sometimes, and one randomly, I real. I didn't know it at the time was Halloween. I know this is so random, but these little muffin faces coming to my door, little trick or treaters, little trick or treaters to hand out candy. And I'll never get to dress my little girl or little boy up in a costume. And it kind of hit me a couple Halloweens ago and I thought, oh, gosh, okay. And I didn't. It caught me by surprise. And that's what grief does when you're walking alongside of. It catches you by surprise. And it doesn't mean you have to stay there. It just means, like, give yourself the grace, give yourself a break to acknowledge the grief. You're allowed to still grieve things that were even 10, 20 years ago. You know, if you are moving forward, you can't stay in that state, but you can give yourself a break and be able to take as much time as you need to grieve. And even when it doesn't seem like you should grieve that anymore, probably it wasn't the most eloquent way I said that, but I think, I think it's true though.
- [50:21]
A
It's exactly, it does make sense. It's like, because that is the piece with grief, I think that is the most, I don't want to say confusing, but like, you think you have, you can have so many good days in a row, like, like weeks and months of them. And then like you said, there's these little triggers and, and for me it was hard because I never knew that they, like, I didn't understand some of my emotion. Right. Like, and I've talked about it, like, when Ethan went to college, I was like, so excited for him. Like, he had worked so hard and he was going to, like he did early decision. And, you know, all of these things were so great, but I knew that I was more crushed than just a normal mom sending her kid to college. Like, there was something really visceral in the way I was reacting. And it took me a while to realize, like, wait, I am associating this with the loss of Jake again. Like, I had it all twisted in that him going to college was like, the same as Jake dying, which my mind knew wasn't the same, but it's almost like my body didn't. It was the same emotion and my body couldn't process it. And it was weird.
- [51:27]
B
Yes.
- [51:27]
A
It's just.
- [51:28]
B
You don't.
- [51:28]
A
But that's what it is. Yeah.
- [51:30]
B
Right.
- [51:30]
A
And that's the Halloween. Like, all of a sudden you're like, why are these cute kids pissing me off? Like, or whatever it is.
- [51:35]
B
Right, right. Why is that cute witch pissing me off? Right. I so sad that she's at my door. And I. And I'm like, here has 25 Twix bars.
- [51:43]
A
Because.
- [51:44]
B
Right. It's just these, like, little things. Like, for a while, I would go to baby showers. And I still don't love that. It's just a trigger for me now, the closeness of my friends. They know they've walked alongside me, so they understand. And it's not that I'm never not happy for anybody. But you also know your limits, right? To a point where now I could and have no problem with it, but there was a stretch there where I could not get myself to do it. And even with my disease, when I was very sick, I was even grieving my past self, where it was more maintenance and me being able to do IV antibiotics or. And that would kind of, you know, starve off some of the infection for a while. So I've always been in this grief cycle my entire life. And someone said to me, which actually kind of pissed me off right after the surrogacy failed, and said, well, you're the best person to be able to handle this because you know how to get through tough moments. Can you imagine? And it was only one person. But the fact for me, it was. It was really hurtful because I wanted to be able to have that time. And I didn't need somebody advice. I just wanted something that I could vent to and, you know, share with how I was feeling. And I don't know, that goes with the grief, Right. That you have, because sometimes your experiences are going to be different and grief will continue to show up. There will be grief down the road for me at some point for something. Right. And like, so grief is the constant. Learn how to walk alongside of it, but learn also to find Some joy within it. Again, what. This is like two emotions. That should be the name of the episode, Two emotions. Right? Because I think you get like these motivational speakers. Because I do a lot of keynote speaking at conferences and companies. You have some of these motivational speakers who are just like, go, go, go. You can do anything. You're doing a disservice to your audience because when they go through something hard, the next time they have a diagnosis, a layoff, a loved one has passed, they. They think that it's not okay to practice grief. And that's why I'm really, really, really want to communicate my message because it can be realistic resilience as well. And there's grief within that, but there's
- [54:14]
A
also so much joy and there's so much room for both. Right? Like it's just. There just. It's so much room for both. I would love to know now. So you are so 2019, is that what you said when you, when you.
- [54:29]
B
2019?
- [54:30]
A
2019, yeah. November and 2026. What is it like? What is, what's it like for you now? Like, are you, are you treatment free? Are. And I mean like doing your treatments or like so, so what is life like now? And I'd love to just. Yeah, like, no, it's so.
- [54:47]
B
Yeah, yeah. So life now is. I still do those treatments, but I don't have to do them daily like I used to. It's when I'm having a bad lung day, if I catch a cold or get sick. I have to be very careful with my immune system. It's lower than most for obvious reasons. I still currently right now have about 45% lung function. I never had this huge jump in my lung function. It was better than it was on one of my sickest nights in the hospital in 2019. I remember it was around 30s, maybe 35%. I was 79 pounds. I was so fragile.
- [55:29]
A
Oh, wow.
- [55:30]
B
Okay. I was on oxygen. I'm a whopping 94 pounds now, so love to gain more. I'm the only person who's probably ever said that.
- [55:39]
A
But
- [55:41]
B
so I have a port actually because I still do need to get IV antibiotics. My veins unfortunately did give out after my 42nd PICC line, so I still have that kind of maintenance. Whether it's port flushing when I'm having a flare up or an exacerbation as it's called. I still will have to get IV antibiotics. I'm still immune to most. But it doesn't mean that some of those combinations of drugs can't Work to kind of knock down the infection. Still a huge peloton rider. Still don't do as much cadence or resistance as I should, but I can't.
- [56:17]
A
You've got a good reason. Yeah, got a good reason.
- [56:19]
B
So don't yell at me, Alex, Robin, Jen, Allie, Cody. But my life is full of hope. I don't know where my life will go because I still have a lot of ailments, even with the drug. It's, you know, six, almost seven years in, but you never know with drugs and side effects over time and what that can lead to. But I'm going to choose hope and try to live every single day as much as I can and, you know, cram that joy and urgency back. I always share this story in a lot of my talks. And I go back to that. That sickest, scariest sign I just mentioned with the lung function where I had to walk from my hospital bed to the bathroom and it could have been a mile. It was, you know, two, not even two feet when I made it to that bathroom, I collapsed onto the bathroom floor. I can still feel the cold tile. I can remember my warm tears. And I remember thinking this might be it. When I finally made it back to my bed, I remember I opened my iPhone alarm and I wanted to set an alarm because I wanted a little cracker before the next IV round. Joke on me, because as you know, you don't sleep in a hospital. But in case I fell asleep.
- [57:47]
A
Because if you did fall asleep, it'd be right before the alarm.
- [57:49]
B
Yeah, of course. Right, of course. And I remember I changed the name on my alarm to forward. You woke up today. And it was just a reminder for me if I got another 24 hours and got to see those words, I was going to make the day count. And it became a promise that no matter how uncertain the future felt, I wouldn't waste the day I was given. Well, six years later, almost seven, it is still the first thing I see every morning. And that's what my life still looks like now. Being thankful for these next 24 hours, I get. I don't know what's ahead. None of us know. But I also know what it's like to be at the end. And in a weird way, I'm thankful for that.
- [58:36]
A
Erin, I am so grateful that you came on the show. I'm so grateful that we connected. I'm sitting here just, like, taking in everything you just said because I do think they are such important words. And I love the way that you really embrace life and laughter and joy and all of the things and you make it accessible for all of us. And I just thank you. Thank you for giving your talks and for being on the show and for everything.
- [59:07]
B
Thank you.
- [59:08]
A
I'm grateful to have met you.
- [59:10]
B
I'm so grateful to meet you, Heather. And we gotta go take our peloton class together. We gotta go. Absolutely.
- [59:15]
A
We have to make that plan. And grab a margarita. Bo at it. Why not?
- [59:18]
B
Girl, I love. We're best friends forever now. Thank you for having me. It is an honor. And thank you for everything that you do. I know you're helping so many. Thank you.
- [59:26]
A
Thank you for listening to A Place of Yes. I hope today's conversation brought you comfort, connection, maybe even a little bit of hope. If it did, I'd love for you to subscribe and share this episode with someone who might need it to see you next time on A Place of Yes.