A Story of Healing and Hope "On My Way Back to You" Sarah Cart : 149

A journey with Sarah, who shares the struggles her husband Ben faces with systemic sclerosis and the life-saving heart transplant he receives. This experience is set against the backdrop of a pandemic as they navigate the challenges of hospital care, discover the kindness of their community, and find strength in resilience and hope.

Sarah Cart was raised and educated in New York and New England and wrote for multiple local publications. She and her husband, Ben, raised four sons in northeastern Ohio.

We dig into the raw, personal stories that capture the emotional and physical toll of caregiving, the battle with opioid dependency post-surgery, and the power of humour and family support. This narrative serves as a reminder that progress sometimes appears in the smallest gestures and moments of laughter, ultimately illustrating the significance of cherishing every step forward.

Sarah reflects on turning her personal experiences into a compelling narrative with the help of a ghostwriter. Her book On My Way Back to You: One Couple's Journey through Catastrophic Illness to Healing and Hope incorporates the perspectives of her husband and sons, showcasing their challenges.

After becoming empty nesters, Sarah and Ben moved to the Florida Keys but returned each summer to the Pennsylvania Poconos, where they have lifelong family ties.

Let's enjoy her story! 

Chapters

• 13:19 The Unspoken Role of Caregivers
• 24:33 Navigating Relationships and Communication
• 29:32 The Healing Power of Sharing Stories

Transcript

Daniela SM: 0:04

Hi, I'm Daniela. Welcome to my podcast. Because Everyone has a Story, the place to give ordinary people's stories the chance to be shared and preserved. Our stories become the language of connections. Let's enjoy it. Connect and relate, because everyone has a story. Relate because everyone has a story. Welcome. My guest is Sarah Cart. Spending time with Sarah was a treat. Her mission and courage are so refreshing and honest. Sarah shares the powerful journey she and her husband Ben faced, battling systemic sclerosis and navigating a life-saving heart transplant during a global pandemic. Throughout humor, resilience and the support of their community, sarah reveals the raw personal moments that shaped their path to healing. Her memoir On my Way Back to you captures these experiences, showing the strength of family and the beauty in small victories. So let's enjoy her story. Welcome, sarah, to the podcast.

Sarah Cart: 1:10

Thank you. I'm so glad to be here, Daniela. This is wonderful.

Daniela SM: 1:13

Yes, I am also glad that you're here and that you're willing to share a story, which is always so wonderful when people do that. Why do you want to share your story?

Sarah Cart: 1:22

Because without a family having made the extremely challenging decision to donate organs in what has to have been their worst moments, we wouldn't have had a miracle. Their powerful, strong decision to do what they did created miracles for at least five different families, and the ripple effect of that is astonishing.

Daniela SM: 1:45

Wow, five different families. I can't wait to hear the story. So when does your story?

Sarah Cart: 1:49

start. My story starts when my husband, ben, was diagnosed with an autoimmune issue back in the winter of 2016, 2017. It was a very casual, not particularly steep learning curve. To start, we were told that his autoimmune issue, which is called systemic sclerosis, was incurable, but that we would treat it symptom by symptom. So from the beginning, that's what we were doing, until that summer of 2017, he dropped 30 pounds without our even thinking about it. Of 2017, he dropped 30 pounds without our even thinking about it, and suddenly we understood that we were dealing with a much larger beast than we had anticipated.

Sarah Cart: 2:32

The disease migrated through his body from organ to organ. It went from his joints and his tendons to his GI tract which was that loss of 30 pounds to eventually his heart. We ended up having to get him a pacemaker in the summer of 2018. And that was great for about nine months. And then it was obvious that the pacemaker couldn't keep up with what was going on and we were told that his only hope for survival would be if he got a heart transplant.

Sarah Cart: 3:03

So we started running the hurdles to get him onto that list and we were failing. He was very obviously dying as the winter of 2019, 2020 got underway that first few months of 2020, we were going to at least on average 10 doctor's appointments a week because he had so many things going on, and also because we were going to at least on average 10 doctor's appointments a week because he had so many things going on and also because we were trying to go through the various procedures and interviews required to get on the transplant list. And then his kidneys failed two weeks after the pandemic was declared and he ended up in the hospital and I couldn't visit him and he was gone for 10 weeks. He needed a heart and a kidney Heart and well, we weren't sure I mean his kidneys were failing because his heart was doing so badly.

Daniela SM: 3:53

Okay.

Sarah Cart: 3:53

And so there was a question at one point of were we also trying to get him onto the list for a kidney? He got on the list finally once he was in the hospital. They took him off the list at one point while he was in the hospital because he was so unstable. They stabilized him, they put him back on the list and they were about to take him off the list again the day a heart became available. It was a roller coaster.

Daniela SM: 4:16

What about you? How were you dealing with all this?

Sarah Cart: 4:18

Well, in the moment you're just fighting the fire. Once he was in the hospital and I couldn't visit because of the pandemic, my role became advocating on the phone or through Zoom calls. But I also had a lot of time on my own to think about all kinds of things and I made a point of not socializing with anybody, even with the six foot distant rule, because I kept hoping the hospital would change their protocols and at least let me come visit, what I really wanted at that point, because we weren't sure he was going to survive. I hoped that the hospital would relax their protocol just to let me have a compassionate visit, to go say farewell and thank you for the lessons that he and I had shared.

Daniela SM: 5:02

But that didn't happen for the lessons that he and I had shared, but that didn't happen. We never know how to handle when somebody's sick and is not your partner. So what is it that you needed or what is it that you wished, besides the COVID part, which made it all much harder? How can we behave better to help people in your situation, for example?

Sarah Cart: 5:26

Well, I was very lucky that family and friends from across the country were reaching out via phone call, via text, via email. It blows my mind to remember that my first Zoom call was the night Ben went into the hospital. For me to remember what it was like before I knew how to be on a Zoom call is like trying to remember what it was like before I knew how to read. It is now such a part of my life every week, if not every day. People were wonderfully generous about asking what they could do and I didn't really have anything for them to do except to please focus their positive energy on us, especially on Ben on the hospital, on all the caregivers who were there in the hospital with him, the medical staff, the janitorial staff, all those people who kept showing up essential services in the middle of a pandemic. That meant a tremendous amount to me to know that people were doing that.

Sarah Cart: 6:20

For myself, the things that I was doing were taking walks, meditating, journaling, practicing mindful breathing Not necessarily things that I'd ever really done before. The journaling and the walking, yes, but the other things not so much. I didn't have time for those. Suddenly, I needed them and I needed to make time for them. I don't know that that necessarily answers your question, but that's how I went through.

Daniela SM: 6:43

It seems that your community, or your tribe, let's say, knew how to handle it and you were pleased with all of that.

Sarah Cart: 6:50

We were so lucky, ben marvels, now that I think our Christmas list grew. I used to send out about 150 Christmas cards the Christmas cards after our crisis in 2020, I think our Christmas card list was 425 just because of the number of people who reached out, and many of them were people we knew but we didn't know well, and part of why they were reaching out was because it was COVID and they needed something to focus on other than whatever it was that they were in the midst of. When we finally got the word that he got the heart and I shared that he would come out of surgery and that we were onto a new battlefield, the number of people who reached out, who called and emailed in that first 48 hours was astounding, and the messages about thank you finally, some good news. In the midst of this worldwide pandemic, they were thanking me. Wow, Thank you for keeping us in mind. We were just really blessed.

Daniela SM: 7:57

Yeah, that sounds beautiful. And so you, the heart. You know you can donate an organ, but the heart you do need it.

Sarah Cart: 8:03

We don't know where the heart came from. We've written a letter through the hospital to the family, but the only information we ever got was that it was a young, strong heart. But we were in Florida at the time. We don't know if it came from someplace in Florida or if it came from Idaho. We have no idea. The only thing that we can think is that family made that decision, moved forward and for them to stop and look back is just too painful. But I hope they understand how grateful we are. And when that family made that decision, I said four or five other families benefited as well, because I know that kidneys went someplace, the liver went someplace and I don't know about the I mean whether it was corneas or what. We were just told at the time that multiple families had been positively impacted.

Daniela SM: 8:52

Oh, I see, I see, oh, wow, wow, as he got the heart, he got better because this disease that he had, it seemed to be very challenging.

Sarah Cart: 9:01

The disease seems to have been tempered by the new heart. The challenge in Ben's case was that about a week after he got the heart, like I said, I couldn't visit him. So I'm dealing with doctors on the phone two or three times a day. One of the doctors is giving me an update on blood levels and oxygen and other things and says and by the way, when they set up the portable x-ray machine today, the radiologist did it a little farther south than usual. Has anyone mentioned this fractured left hip? And I think they thought that maybe that had happened on their watch sometime between when he'd arrived in an ambulance on the 27th of March this is now about the 27th of April and I said you know what?

Sarah Cart: 9:48

He fell in the middle of the night. He was walking and the doctor said well, didn't you know what was going on at the time? I said no, I had no idea. I didn't know he'd fallen in the middle of the night. He was at the time sleeping on the couch in the living room because his sleep was so unreliable and he was so restless that if he fell out of bed he wanted to be down lower to the floor. And the only reason I ever knew anything about it, because I didn't hear it at the time was a few days later.

Sarah Cart: 10:17

He was popping ibuprofen like they were jelly beans and I asked what that was about and he said well, I fell the other night. What do you mean you fell? Did you hit the coffee table? I don't think so. I fell. I literally fell asleep and fell over, which wasn't a surprise, because he was falling asleep in the middle of conversations. He was falling asleep in the middle of phone calls. The part where he fell asleep while he was walking across the room did not surprise either one of us, but the part where it was a broken hip, that was totally new news. So when he came home from the hospital, his autoimmune was the least of our worries. He was in a wheelchair. He had a bed sore that was massive that needed to be repaired before they could even begin to consider replacing his hip. So it was two months before he got the hip replaced. Wow.

Daniela SM: 11:04

So he came home and you were taking care of him.

Sarah Cart: 11:07

He came into a house that had nobody else in it for 10 weeks to just me, and left behind 24-7 undivided attention of doctors and nurses and janitorial staff and nutritionists and three hot meals, coming into his room on time every day to just me, all by myself trying to figure out how many pills are you supposed to take in the morning? When do I give these other pills to you? What pills can I not give you? What foods can you not eat? Oh, I know, I was supposed to feed you lunch half an hour ago. Sorry, I'll get that now. That part of caregiving was a zero to 100 miles per hour.

Daniela SM: 11:44

Yeah and so, but you obviously made it successfully, or how was it for you?

Sarah Cart: 11:51

We figured it out. He was very patient with me. He got the heart transplant and before they discharged him to home, they actually discharged him to a transplant rehab program to teach him a little bit more about how to take care of himself a little bit. Now they don't get many transplant rehab folks who are in a wheelchair, but they managed to teach him things like how to maneuver around a kitchen even in the wheelchair, how to get in and out of a car, the transferring kinds of things that he needed to learn.

Sarah Cart: 12:24

And so he came home to me having had the head of rehab say probably shouldn't let him sit at his desk and pay your bills for a while, not sure that his executive function is back online yet. So I was prepared for him to be a little out of it, and he was in many ways. But he was also really clear about. I'd walk into his room and he'd say can you go online and order me an extra pillow for my wheelchair? I'm going to need a drink cup for this, I'm going to need thus and such for the bathroom. Up with these lists of five or eight items that every time I walked into his room was really, on the one hand reassuring, on the other hand a little unnerving, but we got through it together, one step at a time.

Daniela SM: 13:15

Wow, I know that he was ill and he had to get better. I always think that people focus on the person who has the issue and not the caregiver, and I have learned through listening to stories that the caregiver has a very, very important role and we tend to forget. So that's why I'm asking you questions about that, because it wasn't easy, I'm sure.

Sarah Cart: 13:37

No, it was, and it's something we don't talk about as a society. I'm sure you have heard the quote from Rosalind Carter about there are four kinds of people in the world those who have been caregivers, those who are caregivers, those who will be caregivers or those who will need caregivers. And we don't talk about it. We don't really prepare for that inevitability. I had the unfortunate blessing of having watched my father be the caregiver to my mother, my sister be the caregiver to her husband, my brother's wife be the caregiver to my brother, and in all those cases the patient died. But I watched these people handle those situations with incredible fortitude and grace, and so I had examples that I could lean back on and reflect on.

Daniela SM: 14:32

Wow, that's impressive that you had so many examples in your life. That's not very normal, like I mean, there's no common that people have so many examples like that.

Sarah Cart: 14:42

Well, if you think about it, I mean, if Rosalind Carter is truly correct, then yeah, that they were showing me that it's inevitable you will either be a caregiver or need one, yeah that's for sure.

Daniela SM: 14:56

I mean, now that you make me think of it, I can realize okay, yes, there's been people in my life family members that have been caregivers or been taken care of. My dad was ill since I was two. He had kidneys problems, so my mom and I mostly my mom were caregivers.

Sarah Cart: 15:14

And you didn't tend to think of it. It was just the way life was that was.

Daniela SM: 15:18

I don't think my mom was expecting that For me. It wasn't just how my dad was, but interesting that when he passed I was not able to be giving any caregiver anymore, like I didn't want it to. You know, even pushing at wheelchair will get really nervous kind of feel uncomfortable about it. There's a little bit of PTSD in the whole thing yeah, it's interesting, right, like I mean, I'm glad that you mentioned that because, you know, I always think PTSD is like something really dramatic, but it was just.

Daniela SM: 15:48

They fought a war on a battlefield with real bullets coming at you.

Sarah Cart: 15:53

No, this is a PTSD. There are figurative bullets and a figurative battlefield.

Daniela SM: 16:00

Obviously you have a happy ending, so tell us what happened then.

Sarah Cart: 16:04

So he got the heart, and then he got the hip.

Daniela SM: 16:07

How long after the heart? Because having a hip first of all is painful.

Sarah Cart: 16:11

Yeah, and in his case it was four months before he was in the OR and there'd been a lot of deterioration. He'd had an extremely painful period waiting to get to the surgery. He was opioid dependent. To the surgery he was opioid dependent, so our biggest challenge once he got past the post-operative pain was getting him off the opioids. Our surgeon and the pain management team at the hospital had been wonderful about that, about preparing us for it in advance and about explaining after the surgery that this is why we limited how much of the painkiller you could take, so now you can take it up to the max and do what you need to do.

Sarah Cart: 16:52

We go in two weeks post-op. Ben says to the surgeon you know, once you told me I could take those meds again. It's been great. And the surgeon looked at him and said I'm so happy for you, I'm not renewing the prescription. We got home and that night I walked into his bedroom with his dinner on a tray to find him in bed with the pills on his hospital tray in front of him table, counting them and saying okay, I have enough If I take it at the rate I'm taking it right now or the rate I've been taking it for the last two weeks I have enough for six weeks and, bless his soul, he got himself off of it within two weeks of that, partly because, again, we had the unfortunate blessing of having a family member with opioid issues and we knew what that path can be like and he did not want to go down that path.

Sarah Cart: 17:39

Once we got him off of that, the other challenge was his learning to walk again. He was a champ. He got out of the wheelchair onto the walker. As he got better and better and we tend to relax back into our old roles with each other. You get to a point where you get snippy about stupid stuff. Even now this is years later when we'll get snippy about something stupid snippy about I told you to use a coaster, or why didn't you write that on the grocery list? And he'll walk over to the stairs and just go look at me doing reciprocal steps. And it puts everything in perspective. It's like, yes, you're right, we've come a really long way. Or he'll snip at me and I'll walk over to the stairs and say look at me doing reciprocal steps.

Daniela SM: 18:26

So that's your method of communication.

Daniela SM: 18:34

Yeah, it's become shorthand, for let's remember what's really important here. Wow, that's great. I find incredible, too, that you keep bringing family members that have offering you examples of how to do things better. This is exactly when people say something is fortunate or unfortunate, and I was listening to this kind of monk situation where they were saying, oh, you're fortunate about this and they would say, we'll see. And here is where you have had an unfortunate situation that has been fortunate for you, like the opium lesson of how to get out of it, or family members being caregivers one way or another.

Sarah Cart: 19:07

Even with the little stuff. It helps if you can, if you're well enough rested to turn a situation around like sitting in traffic and wondering how all these people knew I was going to be out here right now, since they could come out and park their cars and get in my way, because don't they understand that I have someplace I need to be. If you can back off of that to the, they're supposed to be there. For some reason they are supposed to be there, slowing me down. It's just trying to reframe things into a way that helps you cope, helps you move forward a step at a time.

Daniela SM: 19:39

But you learn all these during this period of time.

Sarah Cart: 19:41

Yeah, some of it. I learned earlier that the patience with people in traffic I had already kind of taught myself. I mean, I really shouldn't flatter myself to think that they're all out here just to be in my way, I am not that important.

Daniela SM: 19:54

You seem to be a very calm person.

Sarah Cart: 19:56

Yes, I might not have been before I was a parent, but we have four sons and that experience taught me a lot about what is and isn't important, about having to let go, about, having to relax some things.

Daniela SM: 20:09

So if you would have had two, it wouldn't have been the same. I had two. I don't know if I mean I learn a lot of things with the two, but I don't know if patience will be the one.

Sarah Cart: 20:27

Whenever Ben and I happen to be in a church setting and we get to the Lord's Prayer, he'll look at me because he knows that I'm going to be grimacing as I say forgive our trespasses, as we forgive those who trespass against us, because that is something I am not good at. At least being aware of it makes it a little bit more manageable for me.

Daniela SM: 20:41

Okay. So yeah, it's more of a compassion understanding.

Sarah Cart: 20:45

Maybe being less judgmental. Okay, and so Sarah. So what happened after this?

Daniela SM: 20:47

So, yeah, it's more of a compassion, understanding and maybe being less judgmental. Okay, and so Sarah? So what happened after this? So you, because we are going to go to the part of where you wrote the book when your husband is going reciprocals up the stairs.

Sarah Cart: 20:57

So I ended up writing the book because of how much I needed to process On my way back to you. It's the name of the book, but it's a phrase that Ben and I had been using for years. One of us is out doing errands and texting the other like did you get to the post office yet when are you? I know you had six things to do on your errands. How far are you? I'm on my way back to you.

Sarah Cart: 21:19

When he headed off to the hospital, the last thing he said as they were closing the doors to drive away because I didn't take him to the hospital, he said I'm going to go handle this failing kidney situation and I'll be on my way back to you. After all was said and done, after having my caregiving mantle laid over my shoulders like the lead cape at the doctors at the dentist's office when they take your x-ray, I just had so much to process. His autoimmune issue probably would have. Well, we never really got a clear answer on whether or not he could have gotten on the transplant list because of his autoimmune issue, except that then he was in the hospital. His broken hip probably never would have gotten on the transplant list with a broken hip. And how had I missed his broken hip? Oh, my goodness, I'm someone who likes to know where I'm supposed to be at 1030 in the morning on a Tuesday, seven years from now. So the part where I was not responsible enough to recognize that broken hip freaked me out. And yet, because we didn't know about it, because of COVID, because we also, we tend to forget that at the beginning of COVID the tests were taking three and four days to get results back. So the only people who were being taken into the OR were true emergency situations a car accident victim, a gunshot wound or, in Ben's case, someone who was dying, who needed a transplant, who was in the hospital that they knew was COVID free when an organ became available.

Sarah Cart: 22:45

And so there were all of these things that, to my way of thinking, to my being judgmental, should mean that this should not happen. He should not get a transplant. He got a transplant that saved his life and I needed to process that. So writing the book was a way for me to work through all those different scenarios where things had gone wrong but turned out to be what we needed for our miracle. Did you write before? Yes, I've written for local papers for years. The wonderful thing about being a writer at least the way I practiced was that with four kids, I could do an interview and then I could go home, deal with the kids, let the ideas from the interview percolate while I'm doing the laundry or making the dinner, and then sit down and write the article.

Daniela SM: 23:32

Well, you said that you used to journal. Journaling was not enough.

Sarah Cart: 23:36

Yeah, journaling was not enough. I had journaled all the way through Ben's medical issues. I tend to journal more when there's a crisis. I would try to be disciplined enough, as I would do a journal entry to start with what it was that was really freaking me out at that moment and by the end of the journal entry, to turn it around somehow to okay, I can handle this, or it's time to put on my big girl pants, or it's way to go me. I managed yesterday's crisis and I'm ready to handle today's. That helped in the moment, but when I finally didn't have the pressure of having to have three meals a day on a tray up in his room, having to drive him to the next doctor's appointment because he finally had regained some independence, when that pressure released, a whole lot of other stuff released as well. It was like a genie came out of the bottle.

Daniela SM: 24:32

I needed to figure out how to get all that back under control. The person that I'm seeing is such a calm and relaxing and that you're expressing all these. I'm like, wow, how can I not see all that controlling and stress? You're good at hiding it.

Sarah Cart: 24:42

I guess, oh well, that's very kind of you are hiding it, I guess, oh well, that's very kind of you.

Daniela SM: 24:46

How many years have you been?

Sarah Cart: 24:47

married.

Daniela SM: 24:56

We'll be celebrating our 43rd anniversary this fall. Okay, wow, and so obviously you had always a very solid relationship. We were very lucky, yeah, and so what have kept you together in these difficulties, or any difficulties that you have had?

Sarah Cart: 25:09

Humor, a willingness to agree, to disagree on all kinds of things through the years. When we first started dating, I had grown up in situations where, when there was a disagreement, somebody needed to win and he had not, and he taught me somebody needed to win and he had not, and he taught me that nobody needs to win. This isn't a competition, this is a. You think about the situation this way and I think about the situation that way, but instead of coming at it like this head to head, if we just each just shift a little bit, we can still move forward. That was a wonderful lesson for me Ways of being creative with disagreements rather than just starting at okay, we disagree, we're going to fight More of a. Okay, we disagree, not necessarily with each other, but with this situation or whatever it is moving forward, and let's just be creative about how we approach it. I mean, is it really a disagreement? Is it really a chasm that we can't get across, or is there maybe a way to negotiate from this side to that side? It's a partnership.

Daniela SM: 26:22

That's beautiful. He taught you that. What have you?

Sarah Cart: 26:24

taught him that he needs to be better at compromising.

Daniela SM: 26:29

But if he's agreed to disagree, what compromise is needed?

Sarah Cart: 26:36

I think I've softened him up a little bit. Sometimes agree to disagree is a way to dismiss. We work our way closer to at least being on the same roadmap, not necessarily headed to the same destination. Yeah, yeah, yeah.

Daniela SM: 26:47

Okay, well, I like what you're saying, exactly because you know I've been married for 28 years and you know that the true day for my husband will be like okay, okay, just you know, let's stop it, because I don't want to argue anymore. But then I'm like unsatisfied, right, and so this is so. We haven't gotten to your level yet.

Sarah Cart: 27:05

We're getting there, you've got another 15 years in there, you've got another 15 years.

Daniela SM: 27:18

Yes, that's true. So the book was a way to express yourself.

Sarah Cart: 27:20

How did that happen? So I had all of my journaling notes. I had all the notes from his doctor's appointments. We performed years of doctor's appointments. I had doctor's reports. For four years of doctor's appointments, I had doctor's reports, and so I started trying to blend all of that together.

Sarah Cart: 27:36

I came up with a manuscript that was in some ways it was great. It had a true arc, the hero's journey. He's sick, he goes away, he has a miracle, he comes home, he recovers. I had that, but it was also still very personal and raw. So at that point I was talking with a friend about it, a fellow writer, and she said have you ever considered a ghost writer? Well, the book is pretty much written. But I gave it to a ghost writer, Glenn Plaskin, whose name is on the book as well. Glenn was wonderful about saying okay, this part's repetitive or this part might be more powerful if it's over here and you're missing this. So he would send me a couple of questions and say, in 250 words or less, tell me thus and such, and so I would write that up. One of the other things that he was wonderful to come up with was he said it's great that it's your story. I get that it's Sarah's story. It's not Ben's story, although it is Sarah's story about Ben. But it would be great to have Ben's voice in there. It would be great to have your son's voices in there, your son's voices in there.

Sarah Cart: 28:56

And I was really hesitant about dragging Ben and our sons back through all the trauma.

Sarah Cart: 28:58

But Glenn said, you know, I'll do it, I'll be the one who interviews them. And so he interviewed Ben and he interviewed of our four sons, three of them agreed to do it and the fourth one said I'm done, this is too traumatic for me. That fourth one, I'd actually had been the one that I quoted the most in the book, so his voice was already there. And Glenn added the others as breaks in the chapters. So you do get to hear Ben's voice a couple of times each chapter and you do get to hear our son's different points of view at other points in the book. That added a dimension to it that I was really surprised at how powerful that was, especially when Ben and I first sat down with the manuscript, as Glenn sent it back to me and it's you know, 95% of it is what I sent to him, and then the other 5% is what he encouraged us to add by having me answer some questions, about having Ben answer some questions, about having our sons answer some questions.

Daniela SM: 29:54

And that's beautiful, sarah, it's true, like I was saying, it's not just yes, you want to hear the story of Ben, but I want to know, as a reader, how do you feel and you know, this is just me, because I'm always curious about other people and then, of course, your children have an, have an opinion how it was for them, because or people share their stories and then, as a son, you are there and it's your father and your mother, but then you have feelings too, and so I think it's very important that you did that.

Sarah Cart: 30:22

When, when Glenn first reached out to the boys, I think their reaction was similar to mine, which was we've been through this, we're done, we're moving beyond it. But then, when they actually took part in it, I think they found it to be a healing process for them as well and a way for them to come to terms with everything we had gone through.

Daniela SM: 30:42

Yes, we tend not to talk about these things. You know, my dad died when I was 19. He had an operation before that. He was going to change the dynamic of our family because, instead of having dialysis, he was going to have this bag on his stomach that was going to give us freedom to travel. And we were all excited and it didn't work because he had other complications and we didn't talk about it, and so that, for me, was worse than him dying afterwards, because it was a weekend of silence. Nobody talked about it, we didn't discuss it. I feel like it's important to talk about situations like this.

Sarah Cart: 31:19

And we had been honest with the boys probably more so than they were comfortable with about how sick Ben was. We took them a bit more on the roller coaster than maybe we needed to, although I felt very strongly when Ben went in the hospital that we all be on the same page of how close he was to dying. I mean, this is what's going on with dad, and I don't want to have to take back anything I've told you about, oh, he's going to be fine. I don't want to tell you, oh, he's going to be fine, because the chances are very high that he's not going to be fine. So please brace yourselves, figure out what kind of support network you need. I don't know where this is going, and how old were they? They were all between 25 and 35. I know when my mom got sick and I was in my 20s, you suddenly become three years old again in that kind of a crisis, and so I was very aware that that could happen to them.

Daniela SM: 32:17

And then you're also interesting to see how each of them reacted. Differently they did.

Sarah Cart: 32:22

They reacted very differently. One of them, through the years between Ben's initial diagnosis of the autoimmune and the heart transplant, made a big effort to spend time with Ben. Ben likes to be out in the woods stalking protein for our freezer and that son made a huge point of getting to northeastern Pennsylvania to do that with dad every fall. When Ben got his miracle, that son was put out. He didn't say it to us at the time. This actually came out after he talked with Glenn. It's in the book.

Sarah Cart: 32:55

Ben and I didn't know about it until we read it in the book. He really resented that his father had survived all of this. Don't you know? I made a point of being there with you because you were dying and then you had the. You know he says this is a really immature way to feel about it, but damn it, you had the audacity to survive and he's, and he's worked his way back through it. But we were both stunned to think, wow, he had. We had no idea. We knew that he pulled back but we thought it was based on COVID and distance, but it was based on I need to work through that. You survived when I was prepared for you to die.

Daniela SM: 33:37

Bravo for him to actually be able to express this, because you know it could be a judgment on this, but it is a real feeling that he had, and so he should be very proud of being able to express it.

Sarah Cart: 33:50

Yes, and we've just we've talked about it a few times since then he's like I'm, I was kind of ashamed that I felt that way.

Daniela SM: 33:56

It's like don't, don't be ashamed of a way you feel I am speechless of how many interesting things are coming out of this story. Once you have the book with you, how do you feel? Did it really did what you wanted?

Sarah Cart: 34:09

Yes, yes. And if just one other family can have a miracle as a result, if people will think about organ donation and if they are willing to be organ donors, if they will let their loved ones know it so that in a moment of crisis their loved ones can make such a generous decision, that will make it have been worthwhile to do this. There are parts of it that have been you know it was parts of it were very painful. Parts of it are very stressful to have the book out there. And yet Ben will say, when I'm having my doubts about it, if just one family gets anything like what we got, it will have been worth it.

Sarah Cart: 34:48

And he's healthy now. He still has the autoimmune issues. The autoimmune that he has systemic sclerosis seems to have like a five-year ramping up period and then it levels out and tones down. So we are well into the toned down part of it. He still takes, and he will have to take for the rest of his life, all sorts of immunosuppressants as a transplant recipient. When he came home from the hospital he was taking almost 250 pills a week. He's now taking about 100. In fact, I tend to tell people that he's doing so well that he annoys me on a regular basis.

Daniela SM: 35:24

And you don't at all. Right, you don't annoy him at all. Oh, I never annoy him.

Sarah Cart: 35:31

But I will. Sometimes I'll look at him and say, okay, so forget the reciprocal steps. Right now you're annoying me and I'm trying to remember that I am grateful.

Daniela SM: 35:40

That's wonderful. The book is out there, but you are constantly going to podcasts and meeting people sharing your story. Is that also helping you processing it? Or are you annoyed sometimes because, okay, this is so many times I'm telling the story?

Sarah Cart: 35:56

Sometimes it feels a little bit like root canal without the pain medications, but that's just because I don't like the spotlight very much. So the part where I have to be the one sitting in a you know, having a bunch of people staring at me in an auditorium. I don't mind being in a play and being part of a cast, but being a solo act is a little bit daunting.

Daniela SM: 36:18

Yes, I can understand, Not only knowing about your book, but about all the wonderful messages that you have and the personality that you are sharing with all of us. So I feel like you are giving a I don't know triple gift to everyone, the advice that you're giving about your marriage, marriage is um marriage we were both.

Sarah Cart: 36:38

we both believe that that you work your way through the, through the low points, that there will be another. It's like a saw blade Sometimes. Sometimes you're up here and sometimes you're down here. You hope for more up than down and you have to agree to work at it. We're very lucky that we do agree on that.

Daniela SM: 36:54

Well, not everybody gets to understand that. So I feel like you're very, very fortunate. Besides all the things that have happened, all of them have been lessons to reinforce your love and your understanding and togetherness, I feel.

Sarah Cart: 37:09

Yeah.

Daniela SM: 37:10

Yeah, yes, wonderful. So, sarah, where can we find your book? Where can people follow you?

Sarah Cart: 37:15

The book, is available through Amazon or Barnes, Noble or your local bookstore can order it for you. On my Way Back to you by Sarah Cart with Glenn Plaskin. There is a sarahcartcom or wwwonmywaybacktoyoucom has information as well.

Daniela SM: 37:32

Great. Are you thinking about doing this an audiobook as well? There is an audiobook.

Sarah Cart: 37:37

Yes, it is not me. Somehow I thought maybe it could be me and then when I got into it I realized that no, it needed to be professionals. But it's a lovely rendition by some actors out of New York City.

Daniela SM: 37:50

Well, anything else that can be of service to you, anything that we're missing, Just the point about talk about organ donation with those you love.

Sarah Cart: 37:58

That's the most important thing to me, because that family making that decision and what has to have been the darkest day of their lives.

Daniela SM: 38:06

My husband and I are donors and when we die, we are going to donate our bodies to science.

Sarah Cart: 38:12

We live in an amazing time. To be able to produce such miracles is phenomenal.

Daniela SM: 38:17

I wanted to ask so, Ben, when he got his heart, is he different at all? The?

Sarah Cart: 38:22

one thing that he thinks is different. He never liked chocolate. That worked really well for me because I do. So I knew if there was chocolate in the house there would always be chocolate in the house as long as I hadn't finished it. He hasn't finished any chocolate in the house, but he is now tolerant of chocolate in a way that he remarks on. So he says that he feels he's more sensitive to other people than he ever was before. But I think that's just the experience that he's been through and the number of people who reached out and were supportive to him. He now feels as best he can to pay that forward.

Daniela SM: 39:03

And so now you are with a younger man, right?

Sarah Cart: 39:06

Yes, I am. A day after he got the new heart, a very good friend texted me and said now that he has a new heart, he gets to fall in love with you all over again. And yeah, we celebrated his fourth birthday in April. Oh, that's wonderful.

Daniela SM: 39:21

Wonderful. So, sarah, thank you so much for your story and sharing and being so vulnerable and being here. Appreciate it.

Sarah Cart: 39:27

Well, thank you. I appreciate talking with you too, Daniela, very much.

Daniela SM: 39:32

Thank you, sarah. I hope you enjoyed today's episode. I am Daniela and you are listening to, because Everyone has a Story. Please take five seconds right now and think of somebody in your life that may enjoy what you just heard, or someone that has a story to be shared and preserved. When you think of that person, shoot them a text with the link of this podcast. This will allow the ordinary magic to go further. Join me next time for another story conversation. Thank you for listening. Hasta pronto you. Thank you.