November 5, 2024 • 41 mins
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!
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Thank you for listening - Hasta Pronto!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Daniela SM (00:04):
Hi, I'm Daniela.
Welcome to my podcast.
Because Everyone has a Story,the place to give ordinary
people's stories the chance tobe shared and preserved.
Our stories become the languageof connections.
Let's enjoy it.
Connect and relate, becauseeveryone has a story.
Relate because everyone has astory.
(00:31):
Welcome.
My guest is Sarah Cart.
Spending time with Sarah was atreat.
Her mission and courage are sorefreshing and honest.
Sarah shares the powerfuljourney she and her husband Ben
faced, battling systemicsclerosis and navigating a
life-saving heart transplantduring a global pandemic.
Throughout humor, resilienceand the support of their
community, sarah reveals the rawpersonal moments that shaped
(00:54):
their path to healing.
Her memoir On my Way Back toyou captures these experiences,
showing the strength of familyand the beauty in small
victories.
So let's enjoy her story.
Welcome, sarah, to the podcast.
Sarah Cart (01:10):
Thank you.
I'm so glad to be here, Daniela.
This is wonderful.
Daniela SM (01:13):
Yes, I am also glad that you're here and that you're
willing to share a story, whichis always so wonderful when
people do that.
Why do you want to share yourstory?
Sarah Cart (01:22):
Because without a family having made the extremely
challenging decision to donateorgans in what has to have been
their worst moments, we wouldn'thave had a miracle.
Their powerful, strong decisionto do what they did created
miracles for at least fivedifferent families, and the
(01:42):
ripple effect of that isastonishing.
Daniela SM (01:45):
Wow, five different families.
I can't wait to hear the story.
So when does your story?
Sarah Cart (01:49):
start.
My story starts when my husband, ben, was diagnosed with an
autoimmune issue back in thewinter of 2016, 2017.
It was a very casual, notparticularly steep learning
curve.
To start, we were told that hisautoimmune issue, which is
called systemic sclerosis, wasincurable, but that we would
(02:13):
treat it symptom by symptom.
So from the beginning, that'swhat we were doing, until that
summer of 2017, he dropped 30pounds without our even thinking
about it.
Of 2017, he dropped 30 poundswithout our even thinking about
it, and suddenly we understoodthat we were dealing with a much
larger beast than we hadanticipated.
The disease migrated through hisbody from organ to organ.
(02:36):
It went from his joints and histendons to his GI tract which
was that loss of 30 pounds toeventually his heart.
We ended up having to get him apacemaker in the summer of 2018
.
And that was great for aboutnine months.
And then it was obvious thatthe pacemaker couldn't keep up
(02:57):
with what was going on and wewere told that his only hope for
survival would be if he got aheart transplant.
So we started running thehurdles to get him onto that
list and we were failing.
He was very obviously dying asthe winter of 2019, 2020 got
underway that first few monthsof 2020, we were going to at
(03:20):
least on average 10 doctor'sappointments a week because he
had so many things going on, andalso because we were going to
at least on average 10 doctor'sappointments a week because he
had so many things going on andalso because we were trying to
go through the variousprocedures and interviews
required to get on thetransplant list.
And then his kidneys failed twoweeks after the pandemic was
declared and he ended up in thehospital and I couldn't visit
(03:43):
him and he was gone for 10 weeks.
He needed a heart and a kidneyHeart and well, we weren't sure
I mean his kidneys were failingbecause his heart was doing so
badly.
Daniela SM (03:53):
Okay.
Sarah Cart (03:53):
And so there was a question at one point of were we
also trying to get him onto thelist for a kidney?
He got on the list finally oncehe was in the hospital.
They took him off the list atone point while he was in the
hospital because he was sounstable.
They stabilized him, they puthim back on the list and they
were about to take him off thelist again the day a heart
(04:14):
became available.
It was a roller coaster.
Daniela SM (04:16):
What about you?
How were you dealing with allthis?
Sarah Cart (04:18):
Well, in the moment you're just fighting the fire.
Once he was in the hospital andI couldn't visit because of the
pandemic, my role becameadvocating on the phone or
through Zoom calls.
But I also had a lot of time onmy own to think about all kinds
of things and I made a point ofnot socializing with anybody,
(04:41):
even with the six foot distantrule, because I kept hoping the
hospital would change theirprotocols and at least let me
come visit, what I really wantedat that point, because we
weren't sure he was going tosurvive.
I hoped that the hospital wouldrelax their protocol just to
let me have a compassionatevisit, to go say farewell and
thank you for the lessons thathe and I had shared.
Daniela SM (05:02):
But that didn't happen for the lessons that he
and I had shared, but thatdidn't happen.
We never know how to handlewhen somebody's sick and is not
your partner.
So what is it that you neededor what is it that you wished,
besides the COVID part, whichmade it all much harder?
How can we behave better tohelp people in your situation,
for example?
Sarah Cart (05:26):
Well, I was very lucky that family and friends
from across the country werereaching out via phone call, via
text, via email.
It blows my mind to rememberthat my first Zoom call was the
night Ben went into the hospital.
For me to remember what it waslike before I knew how to be on
a Zoom call is like trying toremember what it was like before
I knew how to read.
It is now such a part of mylife every week, if not every
(05:51):
day.
People were wonderfullygenerous about asking what they
could do and I didn't reallyhave anything for them to do
except to please focus theirpositive energy on us,
especially on Ben on thehospital, on all the caregivers
who were there in the hospitalwith him, the medical staff, the
janitorial staff, all thosepeople who kept showing up
(06:13):
essential services in the middleof a pandemic.
That meant a tremendous amountto me to know that people were
doing that.
For myself, the things that Iwas doing were taking walks,
meditating, journaling,practicing mindful breathing Not
necessarily things that I'dever really done before.
The journaling and the walking,yes, but the other things not
(06:34):
so much.
I didn't have time for those.
Suddenly, I needed them and Ineeded to make time for them.
I don't know that thatnecessarily answers your
question, but that's how I wentthrough.
Daniela SM (06:43):
It seems that your community, or your tribe, let's
say, knew how to handle it andyou were pleased with all of
that.
Sarah Cart (06:50):
We were so lucky, ben marvels, now that I think
our Christmas list grew.
I used to send out about 150Christmas cards the Christmas
cards after our crisis in 2020,I think our Christmas card list
was 425 just because of thenumber of people who reached out
, and many of them were peoplewe knew but we didn't know well,
(07:14):
and part of why they werereaching out was because it was
COVID and they needed somethingto focus on other than whatever
it was that they were in themidst of.
When we finally got the wordthat he got the heart and I
shared that he would come out ofsurgery and that we were onto a
new battlefield, the number ofpeople who reached out, who
(07:38):
called and emailed in that first48 hours was astounding, and
the messages about thank youfinally, some good news.
In the midst of this worldwidepandemic, they were thanking me.
Wow, Thank you for keeping usin mind.
We were just really blessed.
Daniela SM (07:57):
Yeah, that sounds beautiful.
And so you, the heart.
You know you can donate anorgan, but the heart you do need
it.
Sarah Cart (08:03):
We don't know where the heart came from.
We've written a letter throughthe hospital to the family, but
the only information we ever gotwas that it was a young, strong
heart.
But we were in Florida at thetime.
We don't know if it came fromsomeplace in Florida or if it
came from Idaho.
We have no idea.
The only thing that we canthink is that family made that
(08:26):
decision, moved forward and forthem to stop and look back is
just too painful.
But I hope they understand howgrateful we are.
And when that family made thatdecision, I said four or five
other families benefited as well, because I know that kidneys
went someplace, the liver wentsomeplace and I don't know about
the I mean whether it wascorneas or what.
(08:46):
We were just told at the timethat multiple families had been
positively impacted.
Daniela SM (08:52):
Oh, I see, I see, oh , wow, wow, as he got the heart,
he got better because thisdisease that he had, it seemed
to be very challenging.
Sarah Cart (09:01):
The disease seems to have been tempered by the new
heart.
The challenge in Ben's case wasthat about a week after he got
the heart, like I said, Icouldn't visit him.
So I'm dealing with doctors onthe phone two or three times a
day.
One of the doctors is giving mean update on blood levels and
oxygen and other things and saysand by the way, when they set
(09:25):
up the portable x-ray machinetoday, the radiologist did it a
little farther south than usual.
Has anyone mentioned thisfractured left hip?
And I think they thought thatmaybe that had happened on their
watch sometime between whenhe'd arrived in an ambulance on
the 27th of March this is nowabout the 27th of April and I
(09:47):
said you know what?
He fell in the middle of thenight.
He was walking and the doctorsaid 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 inthe middle of the night.
He was at the time sleeping onthe couch in the living room
because his sleep was sounreliable and he was so
restless that if he fell out ofbed he wanted to be down lower
(10:10):
to the floor.
And the only reason I ever knewanything about it, because I
didn't hear it at the time was afew days later.
He was popping ibuprofen likethey were jelly beans and I
asked what that was about and hesaid 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 andfell over, which wasn't a
(10:31):
surprise, because he was fallingasleep in the middle of
conversations.
He was falling asleep in themiddle of phone calls.
The part where he fell asleepwhile he was walking across the
room did not surprise either oneof us, but the part where it
was a broken hip, that wastotally new news.
So when he came home from thehospital, his autoimmune was the
least of our worries.
He was in a wheelchair.
(10:52):
He had a bed sore that wasmassive that needed to be
repaired before they could evenbegin to consider replacing his
hip.
So it was two months before hegot 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 leftbehind 24-7 undivided attention
of doctors and nurses andjanitorial staff and
nutritionists and three hotmeals, coming into his room on
time every day to just me, allby myself trying to figure out
(11:28):
how many pills are you supposedto take in the morning?
When do I give these otherpills to you?
What pills can I not give you?
What foods can you not eat?
Oh, I know, I was supposed tofeed you lunch half an hour ago.
Sorry, I'll get that now.
That part of caregiving was azero 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 andbefore they discharged him to
home, they actually dischargedhim to a transplant rehab
program to teach him a littlebit more about how to take care
of himself a little bit.
Now they don't get manytransplant rehab folks who are
(12:12):
in a wheelchair, but theymanaged to teach him things like
how to maneuver around akitchen even in the wheelchair,
how to get in and out of a car,the transferring kinds of things
that he needed to learn.
And so he came home to me havinghad the head of rehab say
probably shouldn't let him sitat his desk and pay your bills
(12:33):
for a while, not sure that hisexecutive function is back
online yet.
So I was prepared for him to bea little out of it, and he was
in many ways.
But he was also really clearabout.
I'd walk into his room and he'dsay can you go online and order
me an extra pillow for mywheelchair?
I'm going to need a drink cupfor this, I'm going to need thus
(12:55):
and such for the bathroom.
Up with these lists of five oreight items that every time I
walked into his room was really,on the one hand reassuring, on
the other hand a littleunnerving, 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 peoplefocus on the person who has the
issue and not the caregiver, andI have learned through
listening to stories that thecaregiver has a very, very
important role and we tend toforget.
So that's why I'm asking youquestions 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 thequote from Rosalind Carter about
there are four kinds of peoplein the world those who have been
caregivers, those who arecaregivers, those who will be
caregivers or those who willneed caregivers.
And we don't talk about it.
(13:59):
We don't really prepare forthat inevitability.
I had the unfortunate blessingof having watched my father be
the caregiver to my mother, mysister be the caregiver to her
husband, my brother's wife bethe caregiver to my brother, and
in all those cases the patientdied.
(14:20):
But I watched these peoplehandle those situations with
incredible fortitude and grace,and so I had examples that I
could lean back on and reflecton.
Daniela SM (14:32):
Wow, that's impressive that you had so many
examples in your life.
That's not very normal, like Imean, there's no common that
people have so many exampleslike that.
Sarah Cart (14:42):
Well, if you think about it, I mean, if Rosalind
Carter is truly correct, thenyeah, that they were showing me
that it's inevitable you willeither 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 beenpeople in my life family members
that have been caregivers orbeen taken care of.
My dad was ill since I was two.
He had kidneys problems, so mymom 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 wasthat 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 begiving any caregiver anymore,
like I didn't want it to.
You know, even pushing atwheelchair will get really
nervous kind of feeluncomfortable about it.
There's a little bit of PTSD inthe whole thing yeah, it's
(15:40):
interesting, right, like I mean,I'm glad that you mentioned
that because, you know, I alwaysthink PTSD is like something
really dramatic, but it was just.
They fought a war on abattlefield with real bullets
coming at you.
Sarah Cart (15:53):
No, this is a PTSD.
There are figurative bulletsand 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 ofall is painful.
Sarah Cart (16:11):
Yeah, and in his case it was four months before
he was in the OR and there'dbeen a lot of deterioration.
He'd had an extremely painfulperiod waiting to get to the
surgery.
He was opioid dependent.
To the surgery he was opioiddependent, so our biggest
challenge once he got past thepost-operative pain was getting
(16:32):
him off the opioids.
Our surgeon and the painmanagement team at the hospital
had been wonderful about that,about preparing us for it in
advance and about explainingafter the surgery that this is
why we limited how much of thepainkiller you could take, so
now you can take it up to themax and do what you need to do.
(16:52):
We go in two weeks post-op.
Ben says to the surgeon youknow, once you told me I could
take those meds again.
It's been great.
And the surgeon looked at himand said I'm so happy for you,
I'm not renewing theprescription.
We got home and that night Iwalked into his bedroom with his
dinner on a tray to find him inbed with the pills on his
hospital tray in front of himtable, counting them and saying
(17:15):
okay, I have enough If I take itat the rate I'm taking it right
now or the rate I've beentaking 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 ofthat, partly because, again, we
had the unfortunate blessing ofhaving a family member with
opioid issues and we knew whatthat path can be like and he did
(17:37):
not want to go down that path.
Once we got him off of that, theother challenge was his
learning to walk again.
He was a champ.
He got out of the wheelchaironto the walker.
As he got better and better andwe tend to relax back into our
old roles with each other.
You get to a point where youget snippy about stupid stuff.
(17:59):
Even now this is years laterwhen we'll get snippy about
something stupid snippy about Itold you to use a coaster, or
why didn't you write that on thegrocery list?
And he'll walk over to thestairs and just go look at me
doing reciprocal steps.
And it puts everything inperspective.
It's like, yes, you're right,we've come a really long way.
(18:20):
Or he'll snip at me and I'llwalk over to the stairs and say
look at me doing reciprocalsteps.
Daniela SM (18:26):
So that's your method of communication.
Yeah, it's become shorthand, forlet's remember what's really
important here.
Wow, that's great.
I find incredible, too, thatyou keep bringing family members
that have offering you examplesof how to do things better.
This is exactly when people saysomething is fortunate or
(18:46):
unfortunate, and I was listeningto 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 hadan unfortunate situation that
has been fortunate for you, likethe opium lesson of how to get
out of it, or family membersbeing caregivers one way or
another.
Sarah Cart (19:07):
Even with the little stuff.
It helps if you can, if you'rewell enough rested to turn a
situation around like sitting intraffic and wondering how all
these people knew I was going tobe out here right now, since
they could come out and parktheir cars and get in my way,
because don't they understandthat I have someplace I need to
be.
If you can back off of that tothe, they're supposed to be
(19:27):
there.
For some reason they aresupposed to be there, slowing me
down.
It's just trying to reframethings into a way that helps you
cope, helps you move forward astep 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 thepatience with people in traffic
I had already kind of taughtmyself.
I mean, I really shouldn'tflatter myself to think that
they're all out here just to bein 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 thatexperience 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 learna lot of things with the two,
but I don't know if patiencewill 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 begrimacing as I say forgive our
trespasses, as we forgive thosewho trespass against us, because
that is something I am not goodat.
At least being aware of itmakes it a little bit more
manageable for me.
Daniela SM (20:41):
Okay.
So yeah, it's more of acompassion 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 togo to the part of where you
wrote the book when your husbandis 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 myway back to you.
It's the name of the book, butit's a phrase that Ben and I had
been using for years.
One of us is out doing errandsand texting the other like did
you get to the post office yetwhen are you?
I know you had six things to doon your errands.
How far are you?
I'm on my way back to you.
(21:19):
When he headed off to thehospital, the last thing he said
as they were closing the doorsto drive away because I didn't
take him to the hospital, hesaid I'm going to go handle this
failing kidney situation andI'll be on my way back to you.
After all was said and done,after having my caregiving
mantle laid over my shoulderslike the lead cape at the
(21:41):
doctors at the dentist's officewhen they take your x-ray, I
just had so much to process.
His autoimmune issue probablywould have.
Well, we never really got aclear answer on whether or not
he could have gotten on thetransplant list because of his
autoimmune issue, except thatthen he was in the hospital.
His broken hip probably neverwould have gotten on the
(22:04):
transplant list with a brokenhip.
And how had I missed his brokenhip?
Oh, my goodness, I'm someonewho likes to know where I'm
supposed to be at 1030 in themorning on a Tuesday, seven
years from now.
So the part where I was notresponsible enough to recognize
that broken hip freaked me out.
And yet, because we didn't knowabout it, because of COVID,
(22:24):
because we also, we tend toforget that at the beginning of
COVID the tests were takingthree and four days to get
results back.
So the only people who werebeing taken into the OR were
true emergency situations a caraccident victim, a gunshot wound
or, in Ben's case, someone whowas dying, who needed a
transplant, who was in thehospital that they knew was
COVID free when an organ becameavailable.
(22:45):
And so there were all of thesethings 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 savedhis life and I needed to process
that.
So writing the book was a wayfor me to work through all those
different scenarios wherethings had gone wrong but turned
(23:07):
out to be what we needed forour miracle.
Did you write before?
Yes, I've written for localpapers for years.
The wonderful thing about beinga writer at least the way I
practiced was that with fourkids, I could do an interview
and then I could go home, dealwith the kids, let the ideas
from the interview percolatewhile I'm doing the laundry or
(23:29):
making the dinner, and then sitdown 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 waythrough Ben's medical issues.
I tend to journal more whenthere's a crisis.
I would try to be disciplinedenough, as I would do a journal
entry to start with what it wasthat was really freaking me out
at that moment and by the end ofthe journal entry, to turn it
around somehow to okay, I canhandle this, or it's time to put
(24:00):
on my big girl pants, or it'sway to go me.
I managed yesterday's crisisand I'm ready to handle today's.
That helped in the moment, butwhen I finally didn't have the
pressure of having to have threemeals a day on a tray up in his
room, having to drive him tothe next doctor's appointment
because he finally had regainedsome independence, when that
(24:23):
pressure released, a whole lotof other stuff released as well.
It was like a genie came out ofthe bottle.
Daniela SM (24:32):
I needed to figure out how to get all that back
under control.
The person that I'm seeing issuch a calm and relaxing and
that you're expressing all these.
I'm like, wow, how can I notsee 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 youhad always a very solid
relationship.
We were very lucky, yeah, andso what have kept you together
in these difficulties, or anydifficulties that you have had?
Sarah Cart (25:09):
Humor, a willingness to agree, to disagree on all
kinds of things through theyears.
When we first started dating, Ihad grown up in situations
where, when there was adisagreement, somebody needed to
win and he had not, and hetaught me somebody needed to win
(25:29):
and he had not, and he taughtme that nobody needs to win.
This isn't a competition, thisis a.
You think about the situationthis way and I think about the
situation that way, but insteadof coming at it like this head
(25:50):
to head, if we just each justshift a little bit, we can still
move forward.
That was a wonderful lesson forme Ways of being creative with
disagreements rather than juststarting at okay, we disagree,
we're going to fight More of a.
Okay, we disagree, notnecessarily with each other, but
with this situation or whateverit is moving forward, and let's
just be creative about how weapproach it.
I mean, is it really adisagreement?
(26:11):
Is it really a chasm that wecan't get across, or is there
maybe a way to negotiate fromthis 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 isa way to dismiss.
We work our way closer to atleast being on the same roadmap,
not necessarily headed to thesame destination.
Yeah, yeah, yeah.
Daniela SM (26:47):
Okay, well, I like what you're saying, exactly
because you know I've beenmarried for 28 years and you
know that the true day for myhusband 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 levelyet.
Sarah Cart (27:05):
We're getting there, you've got another 15 years in
there, you've got another 15years.
Daniela SM (27:18):
Yes, that's true.
So the book was a way toexpress yourself.
Sarah Cart (27:20):
How did that happen?
So I had all of my journalingnotes.
I had all the notes from hisdoctor's appointments.
We performed years of doctor'sappointments.
I had doctor's reports.
For four years of doctor'sappointments, I had doctor's
reports, and so I started tryingto blend all of that together.
I came up with a manuscript thatwas in some ways it was great.
It had a true arc, the hero'sjourney.
(27:41):
He's sick, he goes away, he hasa miracle, he comes home, he
recovers.
I had that, but it was alsostill very personal and raw.
So at that point I was talkingwith a friend about it, a fellow
writer, and she said have youever considered a ghost writer?
Well, the book is pretty muchwritten.
(28:02):
But I gave it to a ghost writer, Glenn Plaskin, whose name is
on the book as well.
Glenn was wonderful aboutsaying okay, this part's
repetitive or this part might bemore powerful if it's over here
and you're missing this.
So he would send me a couple ofquestions and say, in 250 words
(28:23):
or less, tell me thus and such,and so I would write that up.
One of the other things that hewas wonderful to come up with
was he said it's great that it'syour story.
I get that it's Sarah's story.
It's not Ben's story, althoughit is Sarah's story about Ben.
But it would be great to haveBen's voice in there.
(28:44):
It would be great to have yourson's voices in there, your
son's voices in there.
And I was really hesitant aboutdragging Ben and our sons back
through all the trauma.
But Glenn said, you know, I'lldo it, I'll be the one who
interviews them.
And so he interviewed Ben andhe interviewed of our four sons,
(29:05):
three of them agreed to do itand the fourth one said I'm done
, this is too traumatic for me.
That fourth one, I'd actuallyhad been the one that I quoted
the most in the book, so hisvoice was already there.
And Glenn added the others asbreaks in the chapters.
So you do get to hear Ben'svoice a couple of times each
(29:25):
chapter and you do get to hearour son's different points of
view at other points in the book.
That added a dimension to itthat I was really surprised at
how powerful that was,especially when Ben and I first
sat down with the manuscript, asGlenn sent it back to me and
it's you know, 95% of it is whatI sent to him, and then the
(29:45):
other 5% is what he encouragedus to add by having me answer
some questions, about having Benanswer some questions, about
having our sons answer somequestions.
Daniela SM (29:54):
And that's beautiful , sarah, it's true, like I was
saying, it's not just yes, youwant 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'malways curious about other
people and then, of course, yourchildren have an, have an
opinion how it was for them,because or people share their
stories and then, as a son, youare there and it's your father
(30:17):
and your mother, but then youhave feelings too, and so I
think it's very important thatyou did that.
Sarah Cart (30:22):
When, when Glenn first reached out to the boys, I
think their reaction wassimilar to mine, which was we've
been through this, we're done,we're moving beyond it.
But then, when they actuallytook part in it, I think they
found it to be a healing processfor them as well and a way for
them to come to terms witheverything we had gone through.
Daniela SM (30:42):
Yes, we tend not to talk about these things.
You know, my dad died when Iwas 19.
He had an operation before that.
He was going to change thedynamic of our family because,
instead of having dialysis, hewas going to have this bag on
his stomach that was going togive us freedom to travel.
And we were all excited and itdidn't work because he had other
(31:03):
complications and we didn'ttalk about it, and so that, for
me, was worse than him dyingafterwards, because it was a
weekend of silence.
Nobody talked about it, wedidn't discuss it.
I feel like it's important totalk about situations like this.
Sarah Cart (31:19):
And we had been honest with the boys probably
more so than they werecomfortable with about how sick
Ben was.
We took them a bit more on theroller coaster than maybe we
needed to, although I felt verystrongly when Ben went in the
hospital that we all be on thesame page of how close he was to
(31:40):
dying.
I mean, this is what's going onwith dad, and I don't want to
have to take back anything I'vetold 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 thathe'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 isgoing, and how old were they?
(32:01):
They were all between 25 and 35.
I know when my mom got sick andI was in my 20s, you suddenly
become three years old again inthat kind of a crisis, and so I
was very aware that that couldhappen 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 yearsbetween Ben's initial diagnosis
of the autoimmune and the hearttransplant, made a big effort to
spend time with Ben.
Ben likes to be out in thewoods stalking protein for our
freezer and that son made a hugepoint of getting to
northeastern Pennsylvania to dothat with dad every fall.
(32:44):
When Ben got his miracle, thatson was put out.
He didn't say it to us at thetime.
This actually came out after hetalked with Glenn.
It's in the book.
Ben and I didn't know about ituntil we read it in the book.
He really resented that hisfather had survived all of this.
Don't you know?
I made a point of being therewith you because you were dying
(33:08):
and then you had the.
You know he says this is areally immature way to feel
about it, but damn it, you hadthe audacity to survive and he's
, and he's worked his way backthrough it.
But we were both stunned tothink, wow, he had.
We had no idea.
We knew that he pulled back butwe thought it was based on
COVID and distance, but it wasbased on I need to work through
(33:34):
that.
You survived when I wasprepared for you to die.
Daniela SM (33:37):
Bravo for him to actually be able to express this
, because you know it could be ajudgment on this, but it is a
real feeling that he had, and sohe 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 manyinteresting things are coming
out of this story.
Once you have the book with you, how do you feel?
Did it really did what youwanted?
Sarah Cart (34:09):
Yes, yes.
And if just one other familycan have a miracle as a result,
if people will think about organdonation and if they are
willing to be organ donors, ifthey will let their loved ones
know it so that in a moment ofcrisis their loved ones can make
such a generous decision, thatwill make it have been
(34:30):
worthwhile to do this.
There are parts of it that havebeen you know it was parts of
it were very painful.
Parts of it are very stressfulto have the book out there.
And yet Ben will say, when I'mhaving my doubts about it, if
just one family gets anythinglike what we got, it will have
been worth it.
And he's healthy now.
He still has the autoimmuneissues.
(34:52):
The autoimmune that he hassystemic sclerosis seems to have
like a five-year ramping upperiod and then it levels out
and tones down.
So we are well into the toneddown part of it.
He still takes, and he willhave to take for the rest of his
life, all sorts ofimmunosuppressants as a
transplant recipient.
When he came home from thehospital he was taking almost
(35:13):
250 pills a week.
He's now taking about 100.
In fact, I tend to tell peoplethat 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 atall.
Oh, I never annoy him.
Sarah Cart (35:31):
But I will.
Sometimes I'll look at him andsay, okay, so forget the
reciprocal steps.
Right now you're annoying meand I'm trying to remember that
I am grateful.
Daniela SM (35:40):
That's wonderful.
The book is out there, but youare constantly going to podcasts
and meeting people sharing yourstory.
Is that also helping youprocessing it?
Or are you annoyed sometimesbecause, 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 bethe one sitting in a you know,
having a bunch of people staringat me in an auditorium.
I don't mind being in a playand being part of a cast, but
being a solo act is a little bitdaunting.
Daniela SM (36:18):
Yes, I can understand, Not only knowing
about your book, but about allthe wonderful messages that you
have and the personality thatyou are sharing with all of us.
So I feel like you are giving aI don't know triple gift to
everyone, the advice that you'regiving about your marriage,
marriage is um marriage we wereboth.
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 andsometimes you're down here.
You hope for more up than downand you have to agree to work at
it.
We're very lucky that we doagree 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 thathave happened, all of them have
been lessons to reinforce yourlove and your understanding and
togetherness, I feel.
Sarah Cart (37:09):
Yeah.
Daniela SM (37:10):
Yeah, yes, wonderful .
So, sarah, where can we findyour book?
Where can people follow you?
Sarah Cart (37:15):
The book, is available through Amazon or
Barnes, Noble or your localbookstore can order it for you.
On my Way Back to you by SarahCart with Glenn Plaskin.
There is a sarahcartcom orwwwonmywaybacktoyoucom has
information as well.
Daniela SM (37:32):
Great.
Are you thinking about doingthis an audiobook as well?
There is an audiobook.
Sarah Cart (37:37):
Yes, it is not me.
Somehow I thought maybe itcould be me and then when I got
into it I realized that no, itneeded to be professionals.
But it's a lovely rendition bysome 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 youlove.
Sarah Cart (37:58):
That's the most important thing to me, because
that family making that decisionand 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 toscience.
Sarah Cart (38:12):
We live in an amazing time.
To be able to produce suchmiracles 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 mebecause I do.
So I knew if there waschocolate in the house there
would always be chocolate in thehouse as long as I hadn't
finished it.
He hasn't finished anychocolate in the house, but he
is now tolerant of chocolate ina way that he remarks on.
(38:45):
So he says that he feels he'smore sensitive to other people
than he ever was before.
But I think that's just theexperience that he's been
through and the number of peoplewho reached out and were
supportive to him.
He now feels as best he can topay 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 newheart, a very good friend texted
me and said now that he has anew heart, he gets to fall in
love with you all over again.
And yeah, we celebrated hisfourth birthday in April.
Oh, that's wonderful.
Daniela SM (39:21):
Wonderful.
So, sarah, thank you so muchfor your story and sharing and
being so vulnerable and beinghere.
Appreciate it.
Sarah Cart (39:27):
Well, thank you.
I appreciate talking with youtoo, Daniela, very much.
Daniela SM (39:32):
Thank you, sarah.
I hope you enjoyed today'sepisode.
I am Daniela and you arelistening to, because Everyone
has a Story.
Please take five seconds rightnow and think of somebody in
your life that may enjoy whatyou just heard, or someone that
has a story to be shared andpreserved.
When you think of that person,shoot them a text with the link
(39:53):
of this podcast.
This will allow the ordinarymagic to go further.
Join me next time for anotherstory conversation.
Thank you for listening.
Hasta pronto you.
Thank you.
Hi, I'm Daniela.
Welcome to my podcast.
Because Everyone has a Story,the place to give ordinary
people's stories the chance tobe shared and preserved.
Our stories become the languageof connections.
Let's enjoy it.
Connect and relate, becauseeveryone has a story.
Relate because everyone has astory.
(00:31):
Welcome.
My guest is Sarah Cart.
Spending time with Sarah was atreat.
Her mission and courage are sorefreshing and honest.
Sarah shares the powerfuljourney she and her husband Ben
faced, battling systemicsclerosis and navigating a
life-saving heart transplantduring a global pandemic.
Throughout humor, resilienceand the support of their
community, sarah reveals the rawpersonal moments that shaped
(00:54):
their path to healing.
Her memoir On my Way Back toyou captures these experiences,
showing the strength of familyand the beauty in small
victories.
So let's enjoy her story.
Welcome, sarah, to the podcast.
Sarah Cart (01:10):
Thank you.
I'm so glad to be here, Daniela.
This is wonderful.
Daniela SM (01:13):
Yes, I am also glad that you're here and that you're
willing to share a story, whichis always so wonderful when
people do that.
Why do you want to share yourstory?
Sarah Cart (01:22):
Because without a family having made the extremely
challenging decision to donateorgans in what has to have been
their worst moments, we wouldn'thave had a miracle.
Their powerful, strong decisionto do what they did created
miracles for at least fivedifferent families, and the
(01:42):
ripple effect of that isastonishing.
Daniela SM (01:45):
Wow, five different families.
I can't wait to hear the story.
So when does your story?
Sarah Cart (01:49):
start.
My story starts when my husband, ben, was diagnosed with an
autoimmune issue back in thewinter of 2016, 2017.
It was a very casual, notparticularly steep learning
curve.
To start, we were told that hisautoimmune issue, which is
called systemic sclerosis, wasincurable, but that we would
(02:13):
treat it symptom by symptom.
So from the beginning, that'swhat we were doing, until that
summer of 2017, he dropped 30pounds without our even thinking
about it.
Of 2017, he dropped 30 poundswithout our even thinking about
it, and suddenly we understoodthat we were dealing with a much
larger beast than we hadanticipated.
The disease migrated through hisbody from organ to organ.
(02:36):
It went from his joints and histendons to his GI tract which
was that loss of 30 pounds toeventually his heart.
We ended up having to get him apacemaker in the summer of 2018
.
And that was great for aboutnine months.
And then it was obvious thatthe pacemaker couldn't keep up
(02:57):
with what was going on and wewere told that his only hope for
survival would be if he got aheart transplant.
So we started running thehurdles to get him onto that
list and we were failing.
He was very obviously dying asthe winter of 2019, 2020 got
underway that first few monthsof 2020, we were going to at
(03:20):
least on average 10 doctor'sappointments a week because he
had so many things going on, andalso because we were going to
at least on average 10 doctor'sappointments a week because he
had so many things going on andalso because we were trying to
go through the variousprocedures and interviews
required to get on thetransplant list.
And then his kidneys failed twoweeks after the pandemic was
declared and he ended up in thehospital and I couldn't visit
(03:43):
him and he was gone for 10 weeks.
He needed a heart and a kidneyHeart and well, we weren't sure
I mean his kidneys were failingbecause his heart was doing so
badly.
Daniela SM (03:53):
Okay.
Sarah Cart (03:53):
And so there was a question at one point of were we
also trying to get him onto thelist for a kidney?
He got on the list finally oncehe was in the hospital.
They took him off the list atone point while he was in the
hospital because he was sounstable.
They stabilized him, they puthim back on the list and they
were about to take him off thelist again the day a heart
(04:14):
became available.
It was a roller coaster.
Daniela SM (04:16):
What about you?
How were you dealing with allthis?
Sarah Cart (04:18):
Well, in the moment you're just fighting the fire.
Once he was in the hospital andI couldn't visit because of the
pandemic, my role becameadvocating on the phone or
through Zoom calls.
But I also had a lot of time onmy own to think about all kinds
of things and I made a point ofnot socializing with anybody,
(04:41):
even with the six foot distantrule, because I kept hoping the
hospital would change theirprotocols and at least let me
come visit, what I really wantedat that point, because we
weren't sure he was going tosurvive.
I hoped that the hospital wouldrelax their protocol just to
let me have a compassionatevisit, to go say farewell and
thank you for the lessons thathe and I had shared.
Daniela SM (05:02):
But that didn't happen for the lessons that he
and I had shared, but thatdidn't happen.
We never know how to handlewhen somebody's sick and is not
your partner.
So what is it that you neededor what is it that you wished,
besides the COVID part, whichmade it all much harder?
How can we behave better tohelp people in your situation,
for example?
Sarah Cart (05:26):
Well, I was very lucky that family and friends
from across the country werereaching out via phone call, via
text, via email.
It blows my mind to rememberthat my first Zoom call was the
night Ben went into the hospital.
For me to remember what it waslike before I knew how to be on
a Zoom call is like trying toremember what it was like before
I knew how to read.
It is now such a part of mylife every week, if not every
(05:51):
day.
People were wonderfullygenerous about asking what they
could do and I didn't reallyhave anything for them to do
except to please focus theirpositive energy on us,
especially on Ben on thehospital, on all the caregivers
who were there in the hospitalwith him, the medical staff, the
janitorial staff, all thosepeople who kept showing up
(06:13):
essential services in the middleof a pandemic.
That meant a tremendous amountto me to know that people were
doing that.
For myself, the things that Iwas doing were taking walks,
meditating, journaling,practicing mindful breathing Not
necessarily things that I'dever really done before.
The journaling and the walking,yes, but the other things not
(06:34):
so much.
I didn't have time for those.
Suddenly, I needed them and Ineeded to make time for them.
I don't know that thatnecessarily answers your
question, but that's how I wentthrough.
Daniela SM (06:43):
It seems that your community, or your tribe, let's
say, knew how to handle it andyou were pleased with all of
that.
Sarah Cart (06:50):
We were so lucky, ben marvels, now that I think
our Christmas list grew.
I used to send out about 150Christmas cards the Christmas
cards after our crisis in 2020,I think our Christmas card list
was 425 just because of thenumber of people who reached out
, and many of them were peoplewe knew but we didn't know well,
(07:14):
and part of why they werereaching out was because it was
COVID and they needed somethingto focus on other than whatever
it was that they were in themidst of.
When we finally got the wordthat he got the heart and I
shared that he would come out ofsurgery and that we were onto a
new battlefield, the number ofpeople who reached out, who
(07:38):
called and emailed in that first48 hours was astounding, and
the messages about thank youfinally, some good news.
In the midst of this worldwidepandemic, they were thanking me.
Wow, Thank you for keeping usin mind.
We were just really blessed.
Daniela SM (07:57):
Yeah, that sounds beautiful.
And so you, the heart.
You know you can donate anorgan, but the heart you do need
it.
Sarah Cart (08:03):
We don't know where the heart came from.
We've written a letter throughthe hospital to the family, but
the only information we ever gotwas that it was a young, strong
heart.
But we were in Florida at thetime.
We don't know if it came fromsomeplace in Florida or if it
came from Idaho.
We have no idea.
The only thing that we canthink is that family made that
(08:26):
decision, moved forward and forthem to stop and look back is
just too painful.
But I hope they understand howgrateful we are.
And when that family made thatdecision, I said four or five
other families benefited as well, because I know that kidneys
went someplace, the liver wentsomeplace and I don't know about
the I mean whether it wascorneas or what.
(08:46):
We were just told at the timethat multiple families had been
positively impacted.
Daniela SM (08:52):
Oh, I see, I see, oh , wow, wow, as he got the heart,
he got better because thisdisease that he had, it seemed
to be very challenging.
Sarah Cart (09:01):
The disease seems to have been tempered by the new
heart.
The challenge in Ben's case wasthat about a week after he got
the heart, like I said, Icouldn't visit him.
So I'm dealing with doctors onthe phone two or three times a
day.
One of the doctors is giving mean update on blood levels and
oxygen and other things and saysand by the way, when they set
(09:25):
up the portable x-ray machinetoday, the radiologist did it a
little farther south than usual.
Has anyone mentioned thisfractured left hip?
And I think they thought thatmaybe that had happened on their
watch sometime between whenhe'd arrived in an ambulance on
the 27th of March this is nowabout the 27th of April and I
(09:47):
said you know what?
He fell in the middle of thenight.
He was walking and the doctorsaid 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 inthe middle of the night.
He was at the time sleeping onthe couch in the living room
because his sleep was sounreliable and he was so
restless that if he fell out ofbed he wanted to be down lower
(10:10):
to the floor.
And the only reason I ever knewanything about it, because I
didn't hear it at the time was afew days later.
He was popping ibuprofen likethey were jelly beans and I
asked what that was about and hesaid 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 andfell over, which wasn't a
(10:31):
surprise, because he was fallingasleep in the middle of
conversations.
He was falling asleep in themiddle of phone calls.
The part where he fell asleepwhile he was walking across the
room did not surprise either oneof us, but the part where it
was a broken hip, that wastotally new news.
So when he came home from thehospital, his autoimmune was the
least of our worries.
He was in a wheelchair.
(10:52):
He had a bed sore that wasmassive that needed to be
repaired before they could evenbegin to consider replacing his
hip.
So it was two months before hegot 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 leftbehind 24-7 undivided attention
of doctors and nurses andjanitorial staff and
nutritionists and three hotmeals, coming into his room on
time every day to just me, allby myself trying to figure out
(11:28):
how many pills are you supposedto take in the morning?
When do I give these otherpills to you?
What pills can I not give you?
What foods can you not eat?
Oh, I know, I was supposed tofeed you lunch half an hour ago.
Sorry, I'll get that now.
That part of caregiving was azero 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 andbefore they discharged him to
home, they actually dischargedhim to a transplant rehab
program to teach him a littlebit more about how to take care
of himself a little bit.
Now they don't get manytransplant rehab folks who are
(12:12):
in a wheelchair, but theymanaged to teach him things like
how to maneuver around akitchen even in the wheelchair,
how to get in and out of a car,the transferring kinds of things
that he needed to learn.
And so he came home to me havinghad the head of rehab say
probably shouldn't let him sitat his desk and pay your bills
(12:33):
for a while, not sure that hisexecutive function is back
online yet.
So I was prepared for him to bea little out of it, and he was
in many ways.
But he was also really clearabout.
I'd walk into his room and he'dsay can you go online and order
me an extra pillow for mywheelchair?
I'm going to need a drink cupfor this, I'm going to need thus
(12:55):
and such for the bathroom.
Up with these lists of five oreight items that every time I
walked into his room was really,on the one hand reassuring, on
the other hand a littleunnerving, 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 peoplefocus on the person who has the
issue and not the caregiver, andI have learned through
listening to stories that thecaregiver has a very, very
important role and we tend toforget.
So that's why I'm asking youquestions 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 thequote from Rosalind Carter about
there are four kinds of peoplein the world those who have been
caregivers, those who arecaregivers, those who will be
caregivers or those who willneed caregivers.
And we don't talk about it.
(13:59):
We don't really prepare forthat inevitability.
I had the unfortunate blessingof having watched my father be
the caregiver to my mother, mysister be the caregiver to her
husband, my brother's wife bethe caregiver to my brother, and
in all those cases the patientdied.
(14:20):
But I watched these peoplehandle those situations with
incredible fortitude and grace,and so I had examples that I
could lean back on and reflecton.
Daniela SM (14:32):
Wow, that's impressive that you had so many
examples in your life.
That's not very normal, like Imean, there's no common that
people have so many exampleslike that.
Sarah Cart (14:42):
Well, if you think about it, I mean, if Rosalind
Carter is truly correct, thenyeah, that they were showing me
that it's inevitable you willeither 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 beenpeople in my life family members
that have been caregivers orbeen taken care of.
My dad was ill since I was two.
He had kidneys problems, so mymom 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 wasthat 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 begiving any caregiver anymore,
like I didn't want it to.
You know, even pushing atwheelchair will get really
nervous kind of feeluncomfortable about it.
There's a little bit of PTSD inthe whole thing yeah, it's
(15:40):
interesting, right, like I mean,I'm glad that you mentioned
that because, you know, I alwaysthink PTSD is like something
really dramatic, but it was just.
They fought a war on abattlefield with real bullets
coming at you.
Sarah Cart (15:53):
No, this is a PTSD.
There are figurative bulletsand 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 ofall is painful.
Sarah Cart (16:11):
Yeah, and in his case it was four months before
he was in the OR and there'dbeen a lot of deterioration.
He'd had an extremely painfulperiod waiting to get to the
surgery.
He was opioid dependent.
To the surgery he was opioiddependent, so our biggest
challenge once he got past thepost-operative pain was getting
(16:32):
him off the opioids.
Our surgeon and the painmanagement team at the hospital
had been wonderful about that,about preparing us for it in
advance and about explainingafter the surgery that this is
why we limited how much of thepainkiller you could take, so
now you can take it up to themax and do what you need to do.
(16:52):
We go in two weeks post-op.
Ben says to the surgeon youknow, once you told me I could
take those meds again.
It's been great.
And the surgeon looked at himand said I'm so happy for you,
I'm not renewing theprescription.
We got home and that night Iwalked into his bedroom with his
dinner on a tray to find him inbed with the pills on his
hospital tray in front of himtable, counting them and saying
(17:15):
okay, I have enough If I take itat the rate I'm taking it right
now or the rate I've beentaking 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 ofthat, partly because, again, we
had the unfortunate blessing ofhaving a family member with
opioid issues and we knew whatthat path can be like and he did
(17:37):
not want to go down that path.
Once we got him off of that, theother challenge was his
learning to walk again.
He was a champ.
He got out of the wheelchaironto the walker.
As he got better and better andwe tend to relax back into our
old roles with each other.
You get to a point where youget snippy about stupid stuff.
(17:59):
Even now this is years laterwhen we'll get snippy about
something stupid snippy about Itold you to use a coaster, or
why didn't you write that on thegrocery list?
And he'll walk over to thestairs and just go look at me
doing reciprocal steps.
And it puts everything inperspective.
It's like, yes, you're right,we've come a really long way.
(18:20):
Or he'll snip at me and I'llwalk over to the stairs and say
look at me doing reciprocalsteps.
Daniela SM (18:26):
So that's your method of communication.
Yeah, it's become shorthand, forlet's remember what's really
important here.
Wow, that's great.
I find incredible, too, thatyou keep bringing family members
that have offering you examplesof how to do things better.
This is exactly when people saysomething is fortunate or
(18:46):
unfortunate, and I was listeningto 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 hadan unfortunate situation that
has been fortunate for you, likethe opium lesson of how to get
out of it, or family membersbeing caregivers one way or
another.
Sarah Cart (19:07):
Even with the little stuff.
It helps if you can, if you'rewell enough rested to turn a
situation around like sitting intraffic and wondering how all
these people knew I was going tobe out here right now, since
they could come out and parktheir cars and get in my way,
because don't they understandthat I have someplace I need to
be.
If you can back off of that tothe, they're supposed to be
(19:27):
there.
For some reason they aresupposed to be there, slowing me
down.
It's just trying to reframethings into a way that helps you
cope, helps you move forward astep 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 thepatience with people in traffic
I had already kind of taughtmyself.
I mean, I really shouldn'tflatter myself to think that
they're all out here just to bein 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 thatexperience 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 learna lot of things with the two,
but I don't know if patiencewill 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 begrimacing as I say forgive our
trespasses, as we forgive thosewho trespass against us, because
that is something I am not goodat.
At least being aware of itmakes it a little bit more
manageable for me.
Daniela SM (20:41):
Okay.
So yeah, it's more of acompassion 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 togo to the part of where you
wrote the book when your husbandis 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 myway back to you.
It's the name of the book, butit's a phrase that Ben and I had
been using for years.
One of us is out doing errandsand texting the other like did
you get to the post office yetwhen are you?
I know you had six things to doon your errands.
How far are you?
I'm on my way back to you.
(21:19):
When he headed off to thehospital, the last thing he said
as they were closing the doorsto drive away because I didn't
take him to the hospital, hesaid I'm going to go handle this
failing kidney situation andI'll be on my way back to you.
After all was said and done,after having my caregiving
mantle laid over my shoulderslike the lead cape at the
(21:41):
doctors at the dentist's officewhen they take your x-ray, I
just had so much to process.
His autoimmune issue probablywould have.
Well, we never really got aclear answer on whether or not
he could have gotten on thetransplant list because of his
autoimmune issue, except thatthen he was in the hospital.
His broken hip probably neverwould have gotten on the
(22:04):
transplant list with a brokenhip.
And how had I missed his brokenhip?
Oh, my goodness, I'm someonewho likes to know where I'm
supposed to be at 1030 in themorning on a Tuesday, seven
years from now.
So the part where I was notresponsible enough to recognize
that broken hip freaked me out.
And yet, because we didn't knowabout it, because of COVID,
(22:24):
because we also, we tend toforget that at the beginning of
COVID the tests were takingthree and four days to get
results back.
So the only people who werebeing taken into the OR were
true emergency situations a caraccident victim, a gunshot wound
or, in Ben's case, someone whowas dying, who needed a
transplant, who was in thehospital that they knew was
COVID free when an organ becameavailable.
(22:45):
And so there were all of thesethings 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 savedhis life and I needed to process
that.
So writing the book was a wayfor me to work through all those
different scenarios wherethings had gone wrong but turned
(23:07):
out to be what we needed forour miracle.
Did you write before?
Yes, I've written for localpapers for years.
The wonderful thing about beinga writer at least the way I
practiced was that with fourkids, I could do an interview
and then I could go home, dealwith the kids, let the ideas
from the interview percolatewhile I'm doing the laundry or
(23:29):
making the dinner, and then sitdown 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 waythrough Ben's medical issues.
I tend to journal more whenthere's a crisis.
I would try to be disciplinedenough, as I would do a journal
entry to start with what it wasthat was really freaking me out
at that moment and by the end ofthe journal entry, to turn it
around somehow to okay, I canhandle this, or it's time to put
(24:00):
on my big girl pants, or it'sway to go me.
I managed yesterday's crisisand I'm ready to handle today's.
That helped in the moment, butwhen I finally didn't have the
pressure of having to have threemeals a day on a tray up in his
room, having to drive him tothe next doctor's appointment
because he finally had regainedsome independence, when that
(24:23):
pressure released, a whole lotof other stuff released as well.
It was like a genie came out ofthe bottle.
Daniela SM (24:32):
I needed to figure out how to get all that back
under control.
The person that I'm seeing issuch a calm and relaxing and
that you're expressing all these.
I'm like, wow, how can I notsee 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 youhad always a very solid
relationship.
We were very lucky, yeah, andso what have kept you together
in these difficulties, or anydifficulties that you have had?
Sarah Cart (25:09):
Humor, a willingness to agree, to disagree on all
kinds of things through theyears.
When we first started dating, Ihad grown up in situations
where, when there was adisagreement, somebody needed to
win and he had not, and hetaught me somebody needed to win
(25:29):
and he had not, and he taughtme that nobody needs to win.
This isn't a competition, thisis a.
You think about the situationthis way and I think about the
situation that way, but insteadof coming at it like this head
(25:50):
to head, if we just each justshift a little bit, we can still
move forward.
That was a wonderful lesson forme Ways of being creative with
disagreements rather than juststarting at okay, we disagree,
we're going to fight More of a.
Okay, we disagree, notnecessarily with each other, but
with this situation or whateverit is moving forward, and let's
just be creative about how weapproach it.
I mean, is it really adisagreement?
(26:11):
Is it really a chasm that wecan't get across, or is there
maybe a way to negotiate fromthis 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 isa way to dismiss.
We work our way closer to atleast being on the same roadmap,
not necessarily headed to thesame destination.
Yeah, yeah, yeah.
Daniela SM (26:47):
Okay, well, I like what you're saying, exactly
because you know I've beenmarried for 28 years and you
know that the true day for myhusband 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 levelyet.
Sarah Cart (27:05):
We're getting there, you've got another 15 years in
there, you've got another 15years.
Daniela SM (27:18):
Yes, that's true.
So the book was a way toexpress yourself.
Sarah Cart (27:20):
How did that happen?
So I had all of my journalingnotes.
I had all the notes from hisdoctor's appointments.
We performed years of doctor'sappointments.
I had doctor's reports.
For four years of doctor'sappointments, I had doctor's
reports, and so I started tryingto blend all of that together.
I came up with a manuscript thatwas in some ways it was great.
It had a true arc, the hero'sjourney.
(27:41):
He's sick, he goes away, he hasa miracle, he comes home, he
recovers.
I had that, but it was alsostill very personal and raw.
So at that point I was talkingwith a friend about it, a fellow
writer, and she said have youever considered a ghost writer?
Well, the book is pretty muchwritten.
(28:02):
But I gave it to a ghost writer, Glenn Plaskin, whose name is
on the book as well.
Glenn was wonderful aboutsaying okay, this part's
repetitive or this part might bemore powerful if it's over here
and you're missing this.
So he would send me a couple ofquestions and say, in 250 words
(28:23):
or less, tell me thus and such,and so I would write that up.
One of the other things that hewas wonderful to come up with
was he said it's great that it'syour story.
I get that it's Sarah's story.
It's not Ben's story, althoughit is Sarah's story about Ben.
But it would be great to haveBen's voice in there.
(28:44):
It would be great to have yourson's voices in there, your
son's voices in there.
And I was really hesitant aboutdragging Ben and our sons back
through all the trauma.
But Glenn said, you know, I'lldo it, I'll be the one who
interviews them.
And so he interviewed Ben andhe interviewed of our four sons,
(29:05):
three of them agreed to do itand the fourth one said I'm done
, this is too traumatic for me.
That fourth one, I'd actuallyhad been the one that I quoted
the most in the book, so hisvoice was already there.
And Glenn added the others asbreaks in the chapters.
So you do get to hear Ben'svoice a couple of times each
(29:25):
chapter and you do get to hearour son's different points of
view at other points in the book.
That added a dimension to itthat I was really surprised at
how powerful that was,especially when Ben and I first
sat down with the manuscript, asGlenn sent it back to me and
it's you know, 95% of it is whatI sent to him, and then the
(29:45):
other 5% is what he encouragedus to add by having me answer
some questions, about having Benanswer some questions, about
having our sons answer somequestions.
Daniela SM (29:54):
And that's beautiful , sarah, it's true, like I was
saying, it's not just yes, youwant 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'malways curious about other
people and then, of course, yourchildren have an, have an
opinion how it was for them,because or people share their
stories and then, as a son, youare there and it's your father
(30:17):
and your mother, but then youhave feelings too, and so I
think it's very important thatyou did that.
Sarah Cart (30:22):
When, when Glenn first reached out to the boys, I
think their reaction wassimilar to mine, which was we've
been through this, we're done,we're moving beyond it.
But then, when they actuallytook part in it, I think they
found it to be a healing processfor them as well and a way for
them to come to terms witheverything we had gone through.
Daniela SM (30:42):
Yes, we tend not to talk about these things.
You know, my dad died when Iwas 19.
He had an operation before that.
He was going to change thedynamic of our family because,
instead of having dialysis, hewas going to have this bag on
his stomach that was going togive us freedom to travel.
And we were all excited and itdidn't work because he had other
(31:03):
complications and we didn'ttalk about it, and so that, for
me, was worse than him dyingafterwards, because it was a
weekend of silence.
Nobody talked about it, wedidn't discuss it.
I feel like it's important totalk about situations like this.
Sarah Cart (31:19):
And we had been honest with the boys probably
more so than they werecomfortable with about how sick
Ben was.
We took them a bit more on theroller coaster than maybe we
needed to, although I felt verystrongly when Ben went in the
hospital that we all be on thesame page of how close he was to
(31:40):
dying.
I mean, this is what's going onwith dad, and I don't want to
have to take back anything I'vetold 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 thathe'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 isgoing, and how old were they?
(32:01):
They were all between 25 and 35.
I know when my mom got sick andI was in my 20s, you suddenly
become three years old again inthat kind of a crisis, and so I
was very aware that that couldhappen 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 yearsbetween Ben's initial diagnosis
of the autoimmune and the hearttransplant, made a big effort to
spend time with Ben.
Ben likes to be out in thewoods stalking protein for our
freezer and that son made a hugepoint of getting to
northeastern Pennsylvania to dothat with dad every fall.
(32:44):
When Ben got his miracle, thatson was put out.
He didn't say it to us at thetime.
This actually came out after hetalked with Glenn.
It's in the book.
Ben and I didn't know about ituntil we read it in the book.
He really resented that hisfather had survived all of this.
Don't you know?
I made a point of being therewith you because you were dying
(33:08):
and then you had the.
You know he says this is areally immature way to feel
about it, but damn it, you hadthe audacity to survive and he's
, and he's worked his way backthrough it.
But we were both stunned tothink, wow, he had.
We had no idea.
We knew that he pulled back butwe thought it was based on
COVID and distance, but it wasbased on I need to work through
(33:34):
that.
You survived when I wasprepared for you to die.
Daniela SM (33:37):
Bravo for him to actually be able to express this
, because you know it could be ajudgment on this, but it is a
real feeling that he had, and sohe 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 manyinteresting things are coming
out of this story.
Once you have the book with you, how do you feel?
Did it really did what youwanted?
Sarah Cart (34:09):
Yes, yes.
And if just one other familycan have a miracle as a result,
if people will think about organdonation and if they are
willing to be organ donors, ifthey will let their loved ones
know it so that in a moment ofcrisis their loved ones can make
such a generous decision, thatwill make it have been
(34:30):
worthwhile to do this.
There are parts of it that havebeen you know it was parts of
it were very painful.
Parts of it are very stressfulto have the book out there.
And yet Ben will say, when I'mhaving my doubts about it, if
just one family gets anythinglike what we got, it will have
been worth it.
And he's healthy now.
He still has the autoimmuneissues.
(34:52):
The autoimmune that he hassystemic sclerosis seems to have
like a five-year ramping upperiod and then it levels out
and tones down.
So we are well into the toneddown part of it.
He still takes, and he willhave to take for the rest of his
life, all sorts ofimmunosuppressants as a
transplant recipient.
When he came home from thehospital he was taking almost
(35:13):
250 pills a week.
He's now taking about 100.
In fact, I tend to tell peoplethat 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 atall.
Oh, I never annoy him.
Sarah Cart (35:31):
But I will.
Sometimes I'll look at him andsay, okay, so forget the
reciprocal steps.
Right now you're annoying meand I'm trying to remember that
I am grateful.
Daniela SM (35:40):
That's wonderful.
The book is out there, but youare constantly going to podcasts
and meeting people sharing yourstory.
Is that also helping youprocessing it?
Or are you annoyed sometimesbecause, 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 bethe one sitting in a you know,
having a bunch of people staringat me in an auditorium.
I don't mind being in a playand being part of a cast, but
being a solo act is a little bitdaunting.
Daniela SM (36:18):
Yes, I can understand, Not only knowing
about your book, but about allthe wonderful messages that you
have and the personality thatyou are sharing with all of us.
So I feel like you are giving aI don't know triple gift to
everyone, the advice that you'regiving about your marriage,
marriage is um marriage we wereboth.
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 andsometimes you're down here.
You hope for more up than downand you have to agree to work at
it.
We're very lucky that we doagree 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 thathave happened, all of them have
been lessons to reinforce yourlove and your understanding and
togetherness, I feel.
Sarah Cart (37:09):
Yeah.
Daniela SM (37:10):
Yeah, yes, wonderful .
So, sarah, where can we findyour book?
Where can people follow you?
Sarah Cart (37:15):
The book, is available through Amazon or
Barnes, Noble or your localbookstore can order it for you.
On my Way Back to you by SarahCart with Glenn Plaskin.
There is a sarahcartcom orwwwonmywaybacktoyoucom has
information as well.
Daniela SM (37:32):
Great.
Are you thinking about doingthis an audiobook as well?
There is an audiobook.
Sarah Cart (37:37):
Yes, it is not me.
Somehow I thought maybe itcould be me and then when I got
into it I realized that no, itneeded to be professionals.
But it's a lovely rendition bysome 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 youlove.
Sarah Cart (37:58):
That's the most important thing to me, because
that family making that decisionand 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 toscience.
Sarah Cart (38:12):
We live in an amazing time.
To be able to produce suchmiracles 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 mebecause I do.
So I knew if there waschocolate in the house there
would always be chocolate in thehouse as long as I hadn't
finished it.
He hasn't finished anychocolate in the house, but he
is now tolerant of chocolate ina way that he remarks on.
(38:45):
So he says that he feels he'smore sensitive to other people
than he ever was before.
But I think that's just theexperience that he's been
through and the number of peoplewho reached out and were
supportive to him.
He now feels as best he can topay 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 newheart, a very good friend texted
me and said now that he has anew heart, he gets to fall in
love with you all over again.
And yeah, we celebrated hisfourth birthday in April.
Oh, that's wonderful.
Daniela SM (39:21):
Wonderful.
So, sarah, thank you so muchfor your story and sharing and
being so vulnerable and beinghere.
Appreciate it.
Sarah Cart (39:27):
Well, thank you.
I appreciate talking with youtoo, Daniela, very much.
Daniela SM (39:32):
Thank you, sarah.
I hope you enjoyed today'sepisode.
I am Daniela and you arelistening to, because Everyone
has a Story.
Please take five seconds rightnow and think of somebody in
your life that may enjoy whatyou just heard, or someone that
has a story to be shared andpreserved.
When you think of that person,shoot them a text with the link
(39:53):
of this podcast.
This will allow the ordinarymagic to go further.
Join me next time for anotherstory conversation.
Thank you for listening.
Hasta pronto you.
Thank you.
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On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!