What if the way you respond to crisis could reshape your anxiety—and your relationships?
This powerful episode reveals how one midlife couple used emotional presence, humor, and grounded coping skills to face a devastating cancer diagnosis.
Discover:
1. Coping skills that hold both grief and joy in times of deep uncertainty
2. Why emotional honesty—not toughness—relieves midlife anxiety during crisis
3. How community, faith, and presence redefine mental wellness in the face of cancer
Listen now to discover how midlife anxiety shifts when you stop fighting and start dancing through it.
****
About the Host:
MJ Murray Vachon LCSW is a Licensed Clinical Social Worker with more than 48,000 hours of therapy sessions and 31 years of experience teaching her Mental Wellness curriculum, Inner Challenge. Four years ago she overcame her fear of technology to create a podcast that integrated her vast clinical experience and practical wisdom of cultivating mental wellness using the latest information from neuroscience. MJ was Social Worker of the Year in 2011 for Region 2/IN.
Creating Midlife Calm is a podcast designed to guide you through the challenges of midlife, tackling issues like anxiety, low self-esteem, feeling unworthy, procrastination, and isolation, while offering strategies for improving relationships, family support, emotional wellbeing, mental wellness, and parenting, with a focus on mindfulness, stress management, coping skills, and personal growth to stop rumination, overthinking, and increase confidence through self-care, emotional healing, and mental health support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
MJ Murray Vachon LCSW (00:00):
in this episode, you'll hear the journey
of a midlife couple who sharestheir personal story of having
pancreatic cancer.
Welcome to Creating MidlifeCalm, a podcast dedicated to
empowering midlife minds toovercome anxiety, stop feeling
like crap and become morepresent with your family, all
while achieving greater successat work.
(00:21):
I'm MJ Murray Vachon, a licensedclinical social worker with over
48, 000 hours of therapysessions and 31 years of
experience teaching mentalwellness.
Welcome to the podcast and HappyMother's Day.
today I share an encore episodeas a tribute to the life of Jay
Caponigro who passed away on May11th, 2023.
(00:45):
Just six weeks prior to hisdeath, he and his wife Lynn
graciously sat down with me todiscuss their journey with
cancer.
Three days ago, as I was drivingto work, I suddenly realized,
oh, Sunday's Mother's Day, Ipaused, is this really the right
episode to share on a day meantto celebrate mothers?
(01:06):
Then I re-listened and my answerwas, and is, absolutely.
This episode is about what itmeans to nurture life before,
during, and even after lifeturns upside down and breaks
your heart.
Inside each of us is motheringenergy.
Some of you are fortunate togrow up with a woman who gave it
(01:28):
to you in abundance, othersperhaps not, and you've wisely
devoted your adult life tocultivating that care, to
opening your heart and becomingsomeone who can give and receive
that kind of love, becausethat's the beauty of human
development.
None of us get everything weneed in childhood, but in
(01:50):
adulthood, we can heal.
We can form relationships withourselves and with others that
can make us feel worthy, loved,and joyful.
Out of my 150 plus episodes I'verecorded, this one is my
favorite.
To be honest, it's not reallyabout dying.
(02:10):
It's about living.
It's about loving, and yes, it'sabout dancing.
It's a longer episode in theformat of my first podcast,
Inner Challenge.
But the real gold is inlistening to it all the way
through, whether you do it inone sitting or across a few.
(02:30):
And if you know someonesuffering from cancer or working
in the field of cancer care,consider sharing this episode
with them today.
It might just be the mostmeaningful Mother's Day gift you
could give.
So won't you join me as we goback to two years ago and this
beautiful conversation.
(02:51):
On the podcast today, I haveinvited Jay and Lyn Caponigro
who a year ago this month.
Learned that Jay, a very healthy53-year-old father of four
fantastic humans, seniordirector of community engagement
at Notre Dame and husband to onephenomenal woman was diagnosed
with stage four pancreaticcancer.
(03:13):
As many of you know, a cancerdiagnosis throws a person and
their loved ones into a complexmedical system full of experts
and different opinions, ups anddowns that are not only physical
financial.
Emotional, psychological, andspiritual.
I have known and admired thesetwo people for such a long time,
and I'm so grateful that they'rewilling to talk with us about
(03:36):
the role that mental wellnesshas played in their life as they
have move with this journey ofcancer.
Thank you both for coming today.
Thanks for the invitation.
We're humbled.
Wonderful to be with you.
MJ, you're just two of myfavorite people.
I always start the podcastasking people to define mental
wellness for themselves, and howdo you know when you feel
(03:59):
mentally good?
Jay Caponigro (04:01):
Pre-cancer, maybe my definition would've been a
little different, but I'm notsure yet.
I'm still working through that.
I would've said a healthybalance, uh, physical health.
Definitely having a purpose,sense of direction.
Work is tied into my mentalhealth.
Being able to have a perspectiveof others, be part of who I am
(04:25):
and how I do what I do.
Balance with community, balancewith my own need for taking care
of myself.
I, I think those things are allpieces of it.
And then being able to know myfeelings.
I think this has become a littlebit clearer to me with cancer is
knowing my feelings when I'mhaving them and accepting them.
(04:47):
Lynn and I often talk these daysabout having waves and waves of
emotion.
It's not something that we canname.
Sometimes it's joy, sometimesit's sorrow.
Sometimes it's fear.
It's just a wave of emotion, Ithink more than ever.
I'm clear that's just part oflife.
That's something that.
I need to accept in myself andin Lynn and in those around me
(05:11):
as part of our acknowledging ourmental health.
These things happen whilepurpose is still really
important, work is still reallyimportant.
Naming feelings, sometimes itjust is overwhelming, but that's
okay.
We'll get through that together.
And that's where I thinkcommunity has really grown
tremendously in importance formy mental wellbeing.
Lyn Caponigro (05:33):
I think a big part of mental wellness for me
is knowing who to go to, when togo to them, and in recognizing
those waves, sometimes thosewaves can be all of those
emotions all at the same time,which is really an interesting
phenomena.
Laughing and crying at the sametime.
Who knew that you could feelthose both as strongly at the
same time, but then having thepeople around us, and that's one
(05:56):
thing that I really feel likehas been solidified.
Through this journey and throughthis whole experience is the
community and how important thatcommunity is, and knowing where
to go and knowing that there aremultiple people who, that we can
go to, we can go to each other,but then beyond each other we
have resources that we can goto.
When I'm mentally well, I amidentifying those people and
(06:19):
going to those people andgetting the support that I need.
So
MJ Murray Vachon LCSW (06:23):
part of what I hear you both
articulating so beautifully is.
It's really this one, two danceof super intense feelings that
you have to do something with.
I wonder if you could talk aboutwhat that feels like.
That super intense, overwhelmingsense of two paradoxical
(06:45):
feelings at the same time thatthen the other part of the dance
is, what the heck do I do withit?
How do you know how to dosomething with those over?
Jay Caponigro (06:55):
Warming feelings.
I think the Holy Spirit helps alot with that.
Some might call it serendipity.
Sometimes it's just grinding itout.
I love the word dance though.
I'm really becoming a fan ofthat word in terms of my
relationship with cancer.
It's funny that you use that.
A colleague and I were talkingthe other day and I was sharing
that I really hate this languageabout.
(07:16):
Fighting cancer and this war.
There's all sorts of verbs beingused to talk about cancer that
are negative.
And it is a dance.
We are playing a game.
It's not a game.
It is a dance.
Cancer is moving ahead and weare trying to stop.
We stop it a little cancer movesahead, can, then we nip it a
little bit and, and thatphysical feeling of being
(07:38):
manifest in the mental healthside of things is, I like the
language of dance because.
Sometimes I do step on Lynn'stoes still, and the emotions are
overwhelming either for me orfor her, but sometimes, wow.
We get in the swing and it feelsreally reassuring.
It feels comforting.
Lyn Caponigro (08:00):
I feel like there's a lot of grounding
that's involved.
That's great.
Yeah, there's a lot ofgrounding.
There's a lot of just breathingtogether, just being together,
celebrating when there'ssomething to really celebrate.
But yet, then just being therewith each other.
And it's not only us, we'vereally brought our children into
this, brought our children intothis dance and to the point
(08:22):
where we accept them whereverthey come from and whatever they
bring to this.
And so we're dancing with themto and through their emotions
and we check in with each one ofthem separately, and we check in
as a group.
And I think one of the partsthat we definitely held onto.
Is humor and how humor has arole in all of this has a role
(08:43):
in this dance and how we, we canbe having our fam FaceTime
together right after we'vegotten bad information and
someone's cracking some kind ofjoke to lighten the mood and to
say, Hey, we're stillcelebrating life.
We gotta find all sides of this.
Jay Caponigro (08:58):
I think humor has been very important.
The first night we found outwhat this was about, not the
depth of it all, but that therewas a real issue.
It was cancer and it wassignificant.
I.
I called a priest friend and Itold Lynn, I said, I need to
call this particular personbecause I need to say, I need to
Lyn Caponigro (09:15):
practice saying, I
Jay Caponigro (09:17):
need to practice saying what we have, and yeah,
exactly how do I talk aboutthis?
But how do I talk about it withsome humor?
It's been part of my life.
It's gonna have to be part ofthis journey, and I need to do
it with somebody I trust and whoI know has a good sense of humor
and can see the gravity of it,but also be able to see the
levity.
(09:37):
Or at least bring some levity toit.
And I think that's been helpful.
Back to the original questionabout how do we manage the
dance.
I said serendipity and I saidthe Holy Spirit, and sometimes
they're the same.
I was talking to a close familymember and they said something
that was offputting to me aboutcancer, and one thing we learned
(09:59):
early on was that we don't haveto solve everyone's grief for
what we're going through.
We don't have to solve howthey're feeling.
They do.
And I've had to remind a fewpeople along the way about that.
And this person being prettyclose, I've had to remind a
couple of times us feeling alittle angsty about that.
(10:21):
And then the next day I had ameeting with a colleague, and
the colleague is the person whobrought this dance language to
it, to the table, and I justthought, gosh, that just changes
my perspective and makes me feelvalidated.
Also gives me another way totalk about this and be more
positive about it and have aperspective that I can engage
(10:44):
people with in a way that's howwe've tried to live our lives
together.
Was that serendipity or was thatthe Holy Spirit bringing that
person into my life that day.
Yeah.
So that helps.
There are other days when.
We are coming back from a tripto this or that doctor and you
go, ah, what are we gonna managethis next step?
Lynn and I talk about thein-between stages.
(11:05):
It's one thing to be on atreatment and say, okay, let's
take this one for what it'sworth, the harder stages of this
dance, or when we don't knowwhat the next step is, and
knowing that there'll be a timewhen there won't be a next step.
That can be paralyzing if wedon't wanna hold each other's
hand through that, and thenreceive the love and the caring
(11:28):
and the prayers from so manypeople around us.
Being open to that is really, Ithink, a gift that I cherish.
MJ Murray Vachon LCSW (11:35):
A little known fact about mental wellness
is it's really spiritual, notnecessarily religious, but part
of what I hear you saying, Jay,beautifully, is from the very
beginning, you listen toyourself.
This little instinct, holySpirit, no synchronicity,
whatever one wants to call it,that says, call this person.
(11:58):
And from the beginning youconnected to the spirit of
laughter of humor, which ismedicinal.
There's actually studies thatshow that you also have
connected to the spirit ofcommunity first with each other.
It was never a question to me ifI would have one of you on,
because one of the things thatmy clients have taught me, I.
(12:19):
My dad taught me who also hadcancer was it is a community
experience and the dance of thecommunity that you are in is
always needing to be updated.
Re choreographed might be abetter way of saying it because
you are the only two who knowwhat you need for yourselves as
(12:43):
you move through this, how muchyou can take.
Care of other people.
How much you can give otherpeople is so intensely personal
and it's updated all the time.
I too, I don't like the cancerverbiage of fighting.
I know that we live in a superfighting kind of culture, but
that's not been my experience ofpeople who've been able to live
(13:05):
with cancer, where the dancemetaphor, I think is so much
healthier and really just leanspeople into.
Spirit, whether it's theirreligious spirit, their
spiritual spirit, or theirmental wellness spirit.
What were you gonna say, Lynn?
Lyn Caponigro (13:18):
I was just gonna say a very poignant moment for
me, a memory that I have fromthe very beginning.
The very first time that we wentto a scan and realized there was
something going on because theysent Jay back in another time,
and you could just tell from themedical personnel, I'm a nurse,
I know what the language is, Iknow what the body language is
when something's going on.
(13:39):
And Jay just reached over, heldmy hand and said, here we go.
Wow.
Yeah.
And it's been that.
It's been here we go onto thenext step.
Here we go.
Across the country.
Here we go.
Yeah.
Yeah.
MJ Murray Vachon LCSW (13:54):
It's how you started out, right?
And this is the in sickness andin health.
Yep.
When you said that, I imaginedhow we often felt on our wedding
day.
Oh, here we go.
It's the for better.
Yeah.
This is the for worst, it seemsto me that.
Under the, here we go, is atremendous amount of fear at
that stage and at every stagewhen you're walking through
(14:18):
this.
And I'm just wondering if youcan put into words, how do you
tame the fear?
Lyn Caponigro (14:23):
That's a really good question because I think we
have realized that we have adifferent fear.
We have different fears in this,and it took us a while to come
to that understanding.
That there are different, otherdifferent approaches, different
things that are going on foreach one of us.
A big part of taming the fear, Ithink, was finding ways to
(14:44):
prepare ourselves, gettingthings physically set, prepaying
for a funeral plot, funeral, andall those kind of things of
those kind of fears, financialfears, those kinds of things are
being addressed and continue tobe addressed.
And then there are other fearsthat have come along the way as
the fears come.
We try to address the physicalparts that we can deal with.
(15:04):
Are there still other fears thatcome up?
Absolutely.
There's a fear of watching himbe in pain.
Jay Caponigro (15:10):
What are you talking about?
I'm never in pain,
Lyn Caponigro (15:12):
but I know a fear for him is what is the pain
that's coming?
And he can speak to thathimself.
And that's where I come back tothat community.
There have been so many peoplebeen put in our path.
People that are from our past.
People that we have reconnectedto from our past, but we haven't
been as close to that.
We are now developing deeperrelationships with.
So there are people that areable to help me put that in
perspective.
(15:32):
Just being with them and lettingthem help me through that fear
is very, very powerful for me.
I think
Jay Caponigro (15:41):
fear is, obviously, you're absolutely
right, it's part of what weencounter day to day, but I
don't think I've ever put it inthe same.
Spaces gratitude to uh, kind ofcompare them.
So I guess better said is Ihaven't really considered the
relationship between fear andgratitude and how they work off
(16:04):
each other.
Or maybe in my case, gratitudehelps me deal with the fear.
We are in a clinical trial withsome of the best minds in the
world at the National Institutesfor Health.
How the heck did I get therefrom the south side of Chicago?
How did that happen?
(16:25):
That's more than serendipity,but I'm incredibly grateful for
it, and I'm grateful for a teamof clinicians that are thinking
with, I get the feeling they'reeven thinking about it at home.
Well, how great is that to beworking with somebody who sees
that we wanna make this happen?
Yes, we're working humor withthat relationship too, and we're
(16:47):
honest about the fears with themand.
I think we're all in it tofigure out a way to make this
better for somebody at somepoint.
And if it starts now, we'll beeven more grateful.
But I do think it's not givinginto the fear to be grateful.
It's not fighting the fear to begrateful.
It's just being overwhelmed bythat other really positive
(17:11):
emotion and praying for thatgratitude because sometimes you
don't feel it.
But it helps to keep resentmentat bay.
It helps to keep anger at bay.
I'm not afraid of being angryabout this.
I just don't find much value init, and it doesn't make me feel
better physically, and itdoesn't make me feel better
mentally.
But gratitude does that eases mydiscomfort.
(17:34):
I hadn't really considered that,that relationship.
Maybe I'm overdoing it, but it'sworking for me and prayer is
there all the time and theprayer is.
For gratitude, it's prayer isfor grace, and the prayer is for
yes, serenity, and that's animportant prayer for us right
now.
There's no prayer of why me,Lord, this happens to people all
(17:57):
over.
If what we've seen at Mayo, atour local oncology place and at
the federal level, people thatare suffering everywhere.
We're blessed to be in acommunity, to be suffering with
folks that connect with us inthis suffering.
Lyn Caponigro (18:10):
Speaking to that piece that you said about the
why me, how is it that I, fromSouth side of Chicago, from this
working class family, am now atthe National Institute of Health
getting treatment, and I thinkso much of that is part of that
serendipity or part of that,what has been placed along our
way?
Why am I a nurse?
How did I get to be to thatpoint where I can read through
(18:30):
and sift through a lot of theinformation that I'm looking
for?
Why did my brother find thisarticle that said, here's a
medication that might work foryou?
There's just so many differentpieces along the way that I feel
like are leading us towards thisgreater purpose.
We've often felt that sense of agreater purpose.
I.
I think that really helps withthe fear is that knowing that
(18:50):
there's a reason, there is somegreater reason why all of this
is happening, and maybe we canbe a part of that.
Maybe we can use our gifts andthe people that have been along
our path in order to help us getto that, to see some meaning in
all of this.
That
Jay Caponigro (19:04):
is so true.
I think you remind me of storiesthat we've heard from people who
have experienced cancer andother serious illnesses, and
they've said, you need anadvocate.
Make sure you have an advocategoing in.
One of the things I'm sograteful for is your medical
training, but also your justdogged determination and
(19:25):
persistence, and you askquestions that I wouldn't ask
early on.
I, I almost wanted to shush.
You don't ask that question.
And I was smart enough after 30some years, not to shush you,
but also smart enough to watchin awe to just sit back and let
you lead.
Really the wisdom there, if Ihad any, it was.
(19:47):
Watch you lead and advocate and,and then to admire you because
the doctors were saying thingslike, yeah, we should try that,
or let's call somebody aboutthat.
Or, oh, I know somebody whocould help.
When I said, arriving at NIH issomething I'm grateful for.
To me, it wasn't serendipity.
(20:07):
I agree it was a path ofrelationships that connected to
relationships, but you were atthe beginning of that and in the
middle of that and continue tobe.
A companion and a leader.
And in that I'm very grateful ina selfish way.
Um, I know it.
There's a reason you're doing itthat is for you too.
I like having you around.
(20:28):
Thank you for jumping in thatand our kids like having you
around, but I do worry it's hardon you too and taking that
responsibility, but I am
MJ Murray Vachon LCSW (20:34):
very grateful.
But part of what I hear you bothsaying, and Lynn, you're a
professor.
This isn't about theory, but itis about theory.
Right.
And Jay, in your earliest daysyou were a community activist
and this, it's an activistproject that is for your own
wellness, but hopefully for thewellness of others.
(20:55):
But you said so many wise thingsthat I want to do my best to
mirror back because I don't wantour listeners to miss all this
wisdom.
We started with fear.
We move to anger what you saidyou have learned in real life.
Jay activism often starts out ofanger, this is not correct.
(21:18):
This shouldn't be this way.
What you have learned is angerisn't life giving.
I can flip the fear into anger,or I could hold and dance with
the fear.
You find out that when I dancewith it, I actually end up
finding gratitude.
Lynn, I think you're saying thesame thing.
You're dancing.
(21:38):
With the fear, but for you, itmakes you an advocate that
advocacy has really been a danceof knowledge, and the knowledge
leads you to places that keephaving these connections and
these aha moments, theseepiphanies that make all of this
(21:59):
tolerable, even life-giving andsustainable because you're
really doing all this Inner workwhile you're very busy.
I.
Doing lots of outer work.
You're using your whole selvesand you're using your whole
relationship with each other.
Jay, I really am humbled by yourability to let go and to let
(22:21):
Lynn lead and to not shush awoman who can't be shushed
anyways, you know that.
I know you can't.
Mm-hmm.
But I think that so much of adiagnosis like this is, can we
accept our humble place in it?
And humility isn't being false.
Humility.
Humility is I have gifts and howdo I lean into them for the
(22:42):
benefit of all, and that's abeautiful dance when we use our
gifts for the benefit of all.
Jay Caponigro (22:48):
There's so much in there that you just shared.
In summary, thank you forreflecting that back with us.
A couple of reactions.
I spent 10 years as a communityorganizer, as you said,
organizing in the way that Ilearned it and practiced it and
continue to use it in my workis.
Understanding that anger is avery important motivator and
(23:10):
driver, but hot anger leads torage and flames out.
Cold anger is a durable andlonger term source to help you
reach your self-interest.
In some ways, that's how I'mpracticing being angry on this
personal journey.
(23:30):
My work in organizing is in thepublic world of J Cab Negro.
It's not in my private world.
Two, the principles don't match.
They don't often translate over.
Sometimes they do.
But cold anger a much healthierway to live.
'cause you recognize that thereare things that we should be
angry about.
(23:52):
But if you are stuck in theanger part of it, you flame out.
I've had wiser people than meexpress it.
Part of what we're dealing within this much more private
situation.
The letting go piece is reallytricky.
Talking at the same two levelsof life on the public side.
There's some things I have tolet go of too, and that's really
(24:14):
hard because I've built my lifearound my work and my work is
built around relationships inthe community and in the wider
Notre Dame community.
I find that I have to, part ofwhat's great about my.
Diagnosis and this past year hasbeen my employer's been able to
find a way for me to continue towork.
(24:36):
That has been really meaningfulto me, to be able to tie up
loose ends, to be able to maketransitions, to build some
redundancy in my role.
I guess the question I have iswhether I still have.
Some room or energy to growsomething or build something.
I've built a lot.
I'm a builder more than I am amaintainer.
(24:56):
That's just what I've come toknow about myself.
My boss in particular has reallygiven me some space to continue
to be me in that role, eventhough I have to take time out
to travel or take time out forcertain treatments.
But letting go of some of thebigger things I've built when I
know it's time I've got to letthose go to somebody else, uh,
has been another humbling.
Part of this, but it's necessaryand I realize it, and the same
(25:20):
in the private space of knowingthat there's certain things that
I need to do differently with myfamily now, or I physically
can't do the same way I didbefore.
So I need to be in a differentrole.
Finding the new role, findingthe new way that I can be
productive and contribute.
That's been trickier.
That sometimes gets me in afunk, but I think that.
(25:43):
I've been pulled along in somenice ways by my family,
especially the kids, like youtalked about, Len Workwise.
There've just been some caringrelationships that have helped
me as well.
Those are why.
It just comes back to that senseof gratitude around our
community in so many different,at so many different levels.
MJ Murray Vachon LCSW (26:01):
Can you talk a little bit about how you
decided as a couple to reallyintegrate your children into
this?
Lyn Caponigro (26:09):
MJ.
Part of it was the timing of itall.
We were preparing for our oldestson's wedding two weeks after we
got the Diagno.
Well, two weeks before the veryfirst scan, we didn't even have
a diagnosis yet.
Jay was just going to the doctor'cause he had a little extra
gas.
We knew we were getting readyfor this big wedding out of
town.
We were all going to Texas to gocelebrate a wedding.
(26:31):
So we knew we had to dosomething.
We knew we had to address it.
We knew we were going to be atthe wedding if we could, if in
any possible way we could.
And very quickly we decided thatwe needed to have the kids be a
part of it.
We very quickly decided weneeded to invite them into and
invite the parents of ourdaughter-in-law into this
conversation.
(26:51):
We were about to have this hugeparty together.
There was no way we were gonnahold back.
There was no way we were gonnakeep back from anybody this was
going on.
They knew that he was going tothe doctor.
Very quickly we got theminvolved and started with our
sons in-laws was the very firstpeople that we told.
They were very supportive.
They said, yes, our daughterwould want to know, and we just,
(27:14):
we made it this big party.
Jay Caponigro (27:16):
We were concerned that we would go to this big
event and there'd be the.
Son and mom dance and there'd bedad on the sideline bawling his
eyes out and people would lookand go, well, that seems a
little over sentimental.
Why is he crying so hard?
Or that mom would have a similarexperience at some other level
(27:37):
of the ceremony.
That would be the best casescenario.
The worst case would be thatwe'd be withdrawn or distant or
not connecting with them in thismost amazing.
Moment of their lives.
I
Lyn Caponigro (27:49):
think you talked to that priest, the very first
person you called and you said,I need to figure out what I'm
gonna do.
How do we address this with ourchildren?
And I think the response wasinvite
Jay Caponigro (28:00):
them.
He, he had an experience and hefelt badly.
He wasn't in the moment with, hehad a particular.
Event and
Lyn Caponigro (28:05):
at a wedding.
I believe he was at a weddingtoo.
Jay Caponigro (28:07):
Yeah.
We, we wanted to be in themoment, not for selfish reasons.
We really wanted to have thathonesty, which we've practiced
with them.
Fortunately, we had a coupleweeks so that they could digest
it, at least be able to take adeep breath and know that we
really wanted them to celebratehard.
Might have been a little hard, alittle too hard for a couple of
them, but we did.
We just wanted them also to knowif we had a few more tears.
(28:31):
It wasn't'cause we were unhappy,they were getting married in a
lot of ways.
Lyn Caponigro (28:34):
It was really a gift to have that right at that
moment.
It was such a celebration.
We were surrounded by so manywonderfully supportive people.
It was Jay's birthday and therehearsal dinner night even that
we had this birthday celebrationtogether.
That was just a beautiful.
A beautiful celebration.
It was us all coming together.
(28:55):
Everyone there knew.
There was no one who didn'tknow.
We didn't want it to be the talkof the evening, but everyone
knew so that everyone could beaware, could be sensitive, could
not be offended if anyone had towalk away, those kind of things.
So
MJ Murray Vachon LCSW (29:08):
that just felt very supported.
It really goes to what you saidearlier, Lynn, that capacity to
carry multiple intense,difficult emotions all at the
same time.
And be joyful.
I think that's a beautifulexample and something, when you
use the word invite, that's sosoft, it's so different than
(29:33):
tell we're going to invite ourchildren into this experience.
You have four children.
I know them.
They're awesome, and they'rereally different from each
other.
So when you invite them, theyget to step in.
In their own way, in their owntime and figure out how they
dance with this.
And you're also saying to them,we can do really hard things.
(29:55):
We can have the best moment ofyour life at a wedding and we
can hold this very scaryuncertainty.
I love the definition ofcourage, where it isn't avoiding
fear, it's holding fear anddoing it anyways.
And that was really courageous.
Really courageous to say, as afamily, we can all step into
this in our own way.
It's beautiful.
(30:16):
That's a great definition.
Thanks.
And the metaphor that everyoneneeded a good party.
Yeah.
Everyone needed to dance.
Lyn Caponigro (30:23):
Yeah, we did.
We did.
We danced.
MJ Murray Vachon LCSW (30:27):
How joyful.
Yep.
What do you know about life nowthat you didn't know 18 months
ago?
Lyn Caponigro (30:34):
I think one of the big things that I've learned
over these past 18 months is thetrust in the dance and the trust
in the community, and how much Ican count on that, and how
resourceful and resilient.
Giving people are, it's justamazing to me how there's these
open offers of help from people.
(30:55):
No one is ever offended if I sayno.
People are often veryencouraging me say Yes, but I've
really learned to trust in thatmore than I ever did before.
Trust in the joy that comes outof all of it, and in the
goodness that comes out of allof it.
Jay Caponigro (31:13):
Boy, that's an interesting question.
My mind goes straight to all ofthese little things that I've
learned that are more about, oh,what I've learned about cancer.
Oh, what I've learned aboutpeople's health or what I've
learned about my own body.
I like how you responded morebroadly.
A couple things come to mind.
One is that I don't know wherethis cancer came from.
(31:33):
It's true that I probably dranktoo much Mountain Dew growing
up, but I don't think that's thecause of my cancer.
As you said at the opening,healthy.
And exercising regularly andplaying hockey and playing
racquetball and playingbaseball, and I was doing things
to take care of my body, whichalso brought me joy, and I had
(31:55):
lots of little aches and painsthat I chuckle about now, but
you know, I was healthy.
Those parts of my body thataren't affected by cancer are
still pine for that.
In broader terms, it's good totake care of yourself and to pay
attention.
And to be healthy physically,because that's helping me do
(32:17):
things now, to get throughmedications and treatments, to
give doctors confidence that Icould try new things and, and
that will last for a littlewhile anyway, but that's still
something that I'm bringing fromwhat, how I lived my life.
I would say.
The other thing is, and I don'tmean this to be instrumental,
but.
(32:38):
We've invested a lot inrelationships over time, and I
didn't even realize how muchthat was happening all of our
time here in this community.
My work was relationships.
I don't wanna say take it forgranted, but there's a lot of
blending of personal and work.
There was being on the kidssoccer field on the sidelines,
(33:00):
and there was somebody youworked with on the sidelines
too, so it's.
Mixing that way where it ispersonal and public and a lot
more personal than I realizeduntil this came to be.
I think that's probably the mostimportant thing I've learned
about life is investing inrelationships and being kind.
There's real value in that.
(33:23):
It's not just that you're gonnaget repaid in some way if you
get cancer, it's more Wow, this.
Feels really good.
When you hear from somebody,it's motivating and it's
sustaining and it's affirming.
I hope that in some way mychildren also feel that and
learn that, and I hope that withthe time that I have, I am more
(33:47):
intentional about authenticrelationships, even though I
feel like that's been somethingimportant to me forever.
I just feel like, wow, there'sanother knot I can aim for,
maybe a little higher orsomething.
MJ Murray Vachon LCSW (33:58):
I would say that caper Negros are
relationally affluent humans.
Lyn Caponigro (34:03):
There's another piece of this that becomes a
burden that we have realizedthat all of those people that
love and care for us so much arehurting through this too.
MJ Murray Vachon LCSW (34:12):
Yeah.
Lyn Caponigro (34:13):
That's really, it's hard to, it's hard to share
that information when we knowthat it's hurting someone.
Jay Caponigro (34:22):
Yeah.
It was great to post that notesaying.
Mechanist is really doing thisgreat number on Jay's tumors.
Stuff's shrinking and I feelgreat.
And then a month and a halflater, it's all going the
opposite direction, which weknew it would.
The doctor said it's gonna lastmaybe two months, maybe it's
gonna last six months.
We have no idea.
We jumped at it.
Anyway, the first post was greatand everyone's sending us
(34:43):
messages and they're very happy.
And on the second post we'reabout to send, we're going, oh,
we can't do this to people.
We really raised the questionfor me of hope.
What is hope about?
Do we dare.
This is where you can get allphilosophical, theological, and
all of my academic stuff couldcome out, which I don't want to
do, but it's, yeah, do I dare tohope in the midst of all of this
(35:05):
because I could be hurt?
We just raised the level of hopefor so many other people.
That's the responsibility ofburden.
We knew we were doing it, but wefelt, nope, they've asked to be
on this journey.
We're gonna dive in becausewithout hope, why would we do
any of this?
We have a greater hope that isbeyond cancer, that moves us as
(35:28):
a family and as a couple, whichhas always been at the center of
our lives.
So we're gonna be hopeful andyep, we're gonna write that
second post when we have to.
And we, it was hard.
It's
Lyn Caponigro (35:41):
hard, but yet there's still so much support
around it.
Like you said, we've invitedpeople into the journey.
We have invited people to knowand to have the information.
We're not requiring it.
We're not demanding it fromanyone.
They are going themselves andthey are seeking out this
information.
Yeah.
Would they love to see morehappy posts?
(36:01):
Of course they would, because weknow we would too, but yet they
are still there.
Jay Caponigro (36:06):
It's a great post of someone who said, we're an
Easter people with living in agood Friday world.
And that just nailed it.
That was great because yes,we're living with the Easter
Hope.
Yeah.
I can't say it better and theywould like to see it better news
'cause they love us and we soappreciate that they would be
disappointed.
MJ Murray Vachon LCSW (36:23):
This is a hard question to ask, but how
has the last year changed howyou think about death, how you
think about Good Friday?
Jay Caponigro (36:30):
It's never been lost on me that we're all going
to die.
The fear is how we're going todie.
How much of it is on our ownterms to the degree that we can
play any role in it, I'm at somelevel very fortunate to be able
to have some time to think aboutmy death and prepare for it.
(36:53):
The way that Lynn talked aboutthinking about where do we want
to be buried, we're building andearned, or things that are
meaningful to me about death,it.
Certainly punctuates thepreciousness of life and has me
thinking more about how do Iwant to spend this next weekend?
(37:14):
What's the balance betweenpersonal and work?
What's the balance betweenfinancial and other pressures or
other desires?
Yeah.
I lost my train of thoughtthought on that one.
Lyn Caponigro (37:26):
I think there's really been a sense of the
preciousness of life that hasreally been renewed.
We had the experience of myfather passing away recently.
That has been a death experienceamidst this other experience
that we're having.
He was already not himself.
He was suffering throughdementia.
You know, there was a longgoodbye, right?
He's, we've been saying goodbyefor years.
(37:46):
There's a piece in his passing.
He wasn't happy any longer.
So I'm wondering what part ofthat will we go through as
cancer progresses?
So there's a little bit of fearthere, but yet there's still,
uh, many people around us that Iknow that will help us through
that.
So I have that trust that therewill people be people to help us
through that.
There are moments where it doesfeel like it's just not time
(38:10):
yet.
Jay Caponigro (38:11):
Yeah, I think we felt that a lot at the
beginning, not knowing what thisdiagnosis meant, specifically
knowing it was very dire, butlooking at each other and
saying, oh, we just bought thecamper.
Oh wait, no, that's not right.
We've just got two kids marriedoff.
And what about grandkids?
Now that sense that we weregetting ready for a new phase in
(38:32):
our relationship or we, we wereevolving into that new phase
already.
We were practicing it, we wereputting it out and trying it
out, and there was a lot ofexcitement about that.
And so death feels too soon inthat way.
But from the perspective of.
The world around us.
I, I am hit with the gratitudeagain of, wow, how did we get
(38:53):
this far and have so much in ourlives already that we can be
looking back on and reflectiveof and grateful for.
And I don't want it to end, butI don't want be suffering in a
way that it's affecting all thequality of life of those around
me if I can't really be withthem.
(39:13):
I think it's contrasted in aninteresting way with the fact
that our.
Daughter and son-in-law arepregnant and wait any week now
to have our first grandchild.
So all of what they'reexperiencing as new parents to
be is just so fun.
I think about the excitement ofa new child coming into our
(39:37):
family.
God willing, it hits hard on thepoint of the preciousness of
life and how we have to live itfully and.
Until I can't, we foundourselves at one point, maybe
three or four months into thisdiagnosis and Lynn was driving
more carefully.
She admitted to saying it.
I was thinking it and she's,yeah.
'cause we can't have both of usgoing at the same time for the
(39:58):
kids' sake or, and then I wasthinking, no, you can't go first
'cause I need you.
There are so many differentthings.
So yes, please drive morecarefully.
Not that she wasn't a carefuldriver, but the full stop at the
stop sign.
You're doing a lot more driving.
At that point, it was a littlebit of a reminder, yes, maybe we
don't take things so forgranted.
Let's be just a little morecautious.
(40:19):
I appreciate the moments.
I think I've been a lot morepictures taken of me that
bothers the heck out of me froma old Jay perspective, but I
also know it's really importantto people.
It's important to me now,actually, it's become more
important to me that I be inthose photos.
When I think about thegrandchild especially, I don't
(40:39):
know that I focus so much ondeath.
The real question that you askedis just more about the real
appreciation and understandingof how much of a gift our life
has been and how much of a giftlife can be, and we really need
to hold that, enhance it, andnot just respect it, but enhance
it in all its forms, becausethat's the way we've tried to
live our lives and that's how Iwanna go out.
Lyn Caponigro (40:59):
Yeah.
One of the precious gifts thatwe've been given of this time is
the opportunity for people toshare stories of interaction
with our family interaction justwith Jay, or to share their own
personal stories.
And there's one in particularthat's studying standing out to
me right now that is a friendwho shared a story that her
favorite grandparent.
(41:20):
Was the grandparent that wasnever there because she heard
the stories of this grandparent.
What a gift.
I feel to even have that littlepiece of that they could know
their grandparent just from thestories that have been shared.
And boy, we've been reallycollecting the stories now.
So another gift that we've hadof this past year
MJ Murray Vachon LCSW (41:40):
is just having those stories.
Yeah, this has been so powerful.
I knew it would be powerful, butthis is 10 times more than.
What I knew, which was a reallyhigh expectation.
Is there anything, just inclosing, you feel I'd like to
say that
Jay Caponigro (41:53):
No, I think we've covered a lot of ground.
Thank you for the opportunity toshare.
Lyn Caponigro (41:58):
I think I just wanna iterate, reiterate that I
just feel like this has all beencoming to us as part of this
journey.
I'm so grateful that we havebeen able to take advantage of
and to really engage in all ofthese different pieces that have
been so life-giving to us.
Yet supportive of this wholecommunity that is surrounding
MJ Murray Vachon LCSW (42:19):
us.
I really wanna thank you for therole models you've always been.
This is not a new role for thetwo of you, but I think we as a
culture really struggle whenthings don't go our way, whether
it's illness, whether it's anelection, whether it's not
getting into grad school orNotre Dame.
And we need role models forpeople who opt to dance.
(42:43):
And find that, oh my God, Ididn't know I could hold such
terror and such joy all at onewedding reception to move
through a year where you reallyare practicing what you always
preached.
It's just a different type ofdance floor.
I'm really wanna thank you and Iknow that I'm not alone in that.
(43:04):
I read the Caring Bridge posts.
Thank you so much.
Thank you for being part of thatteam.
Of course this could all fallapart tomorrow.
What a beautiful conversation.
I doubt any of us listening to,Jay and Lynn missed the paradox
that they really didn't talk tous much about dying or cancer,
but really about living.
(43:26):
So here are my Inner Challengeinsights, thanks to their
wisdom.
Insight number one, I lovedJay's line when he first heard
about his diagnosis.
I need to call my friend andpractice saying I have cancer.
From the beginning, he took ahumble stance.
I don't know how to do this, soI will learn.
(43:48):
How do I learn?
I practice insight number two inthe caep Negros words.
Here we go.
We don't have to solve this.
We have different fears.
We are always learning to be inrelationship with each other.
These, my listeners are dancingwords.
(44:11):
We can fight cancer or we candance with cancer.
For those who choose to dance, Iimagine that their heart is much
more open to their partner.
After all, who wants to dancealone?
Insight number three.
My favorite line from Jay wasthis from, I'm not afraid of
being angry.
(44:31):
I just don't find much value init.
Insight number four.
A terminal illness confronts usonce again with the question,
who am I?
It's not easy to let go of work,especially when it's meaningful
and connects to so many in thecommunity.
My hat's off to the Universityof Notre Dame, who once again
has been so supportive to one ofits employees and to Jay's boss
(44:55):
for being flexible, adaptive,and coherent.
As Jane moves through thisprocess of answering the
question, who am I now that I'msick?
This gives him energy andstability as he and his family
navigate these challengingmonths for one to stay mentally
well during an illness.
(45:16):
The role the employer takes onis huge.
In my clinical practice.
I have seen the difference andhas nothing to do with the luck
of the Irish, but a realcommitment to its employees.
Insight number five.
In my career, I've had manyconversations with clients that
begin with this question, howshould I tell my kids?
(45:40):
From now on, I will encourageinviting, not telling insight.
Number six.
This is my last insight and it'sa bit long, but please bear with
me because I think what welearned from Jay and Lynn has a
profound message for mentalwellness.
So.
(46:01):
Number six.
What if our culture's number onevalue was relational affluence,
where our main ambition was notmoney importance or winning, but
rather a high RAS score.
You know, relational affluencescore.
We would look at people like Jayand Lynn, like we do star
athletes, people to admire fortheir relational affluence.
(46:25):
People we are glad to have onour team, you know, team Earth.
If relational affluence was thenumber one goal of an earthling,
we would coup with babies andhope they'd grow up to be kind
and honest and real contributorsto the wellbeing of others, even
at times putting their own wantsand needs.
Second, as parents, we'd losesleep if our child was being
(46:48):
selfish or was prone to fits ofanger because we would wisely
know such behavior might bringdown their RAS score if they
carry it into adulthood.
We'd cheer for the neighbor kidwho got the last spot on the
team, or maybe the lead in theplay.
Even though we knew our childwas disappointed because we
understood that a victory forour neighbor was really a
(47:12):
victory for our own child.
The Cabe Negroes, the wholefamily are relationally
affluent.
This did not start because of acancer diagnosis, but cancer
made it clear to them that allthe love and effort they had
poured into their family.
Their work, their, theircommunity, their school, their
church has come back in spadesthis past year.
(47:36):
Endless meals, pumpkins paintedpurple, palms left on the picnic
table, walks with friends anddoctors who really, really care.
While not expecting this, theycould look back and see how it
happened.
This type of support does notalways happen because it must be
nurtured.
(47:56):
It is what we as humans need.
We are not wired for large bankaccounts or championship
trophies.
These are nice, but what we'rewired for is human connection
and support.
Jay and Lynn are wise in themiddle of all this to hope that
their children all in theirtwenties are taking notice of
(48:18):
this inheritance.
I hope the same for my children.
I hope the same for yours.
In a world where we haveunintentionally over-focused on
competition, starting as earlyas age three, and given our
children phones that havereplaced much of the
face-to-face time, previousgenerations have spent with
(48:38):
friends, I worry that all of ourchildren are being robbed of
their rightful inheritance,relational affluence.
Many say we have a mental healthcrisis in this country.
I of all people am notdisagreeing, but often I think
it's a friendship crisis, solet's put the phones away and
(49:01):
play a board game after dinner.
Invite our kids to come out oftheir rooms and have their
friends over and bring back thepotluck.
We need each other.
It has nothing to do withcancer.
Thanks for listening to thismost special episode.
I'll be back tomorrow with myregular episodes of creating
(49:22):
Midlife Calm.
in this episode, you'll hear the journey
of a midlife couple who sharestheir personal story of having
pancreatic cancer.
Welcome to Creating MidlifeCalm, a podcast dedicated to
empowering midlife minds toovercome anxiety, stop feeling
like crap and become morepresent with your family, all
while achieving greater successat work.
(00:21):
I'm MJ Murray Vachon, a licensedclinical social worker with over
48, 000 hours of therapysessions and 31 years of
experience teaching mentalwellness.
Welcome to the podcast and HappyMother's Day.
today I share an encore episodeas a tribute to the life of Jay
Caponigro who passed away on May11th, 2023.
(00:45):
Just six weeks prior to hisdeath, he and his wife Lynn
graciously sat down with me todiscuss their journey with
cancer.
Three days ago, as I was drivingto work, I suddenly realized,
oh, Sunday's Mother's Day, Ipaused, is this really the right
episode to share on a day meantto celebrate mothers?
(01:06):
Then I re-listened and my answerwas, and is, absolutely.
This episode is about what itmeans to nurture life before,
during, and even after lifeturns upside down and breaks
your heart.
Inside each of us is motheringenergy.
Some of you are fortunate togrow up with a woman who gave it
(01:28):
to you in abundance, othersperhaps not, and you've wisely
devoted your adult life tocultivating that care, to
opening your heart and becomingsomeone who can give and receive
that kind of love, becausethat's the beauty of human
development.
None of us get everything weneed in childhood, but in
(01:50):
adulthood, we can heal.
We can form relationships withourselves and with others that
can make us feel worthy, loved,and joyful.
Out of my 150 plus episodes I'verecorded, this one is my
favorite.
To be honest, it's not reallyabout dying.
(02:10):
It's about living.
It's about loving, and yes, it'sabout dancing.
It's a longer episode in theformat of my first podcast,
Inner Challenge.
But the real gold is inlistening to it all the way
through, whether you do it inone sitting or across a few.
(02:30):
And if you know someonesuffering from cancer or working
in the field of cancer care,consider sharing this episode
with them today.
It might just be the mostmeaningful Mother's Day gift you
could give.
So won't you join me as we goback to two years ago and this
beautiful conversation.
(02:51):
On the podcast today, I haveinvited Jay and Lyn Caponigro
who a year ago this month.
Learned that Jay, a very healthy53-year-old father of four
fantastic humans, seniordirector of community engagement
at Notre Dame and husband to onephenomenal woman was diagnosed
with stage four pancreaticcancer.
(03:13):
As many of you know, a cancerdiagnosis throws a person and
their loved ones into a complexmedical system full of experts
and different opinions, ups anddowns that are not only physical
financial.
Emotional, psychological, andspiritual.
I have known and admired thesetwo people for such a long time,
and I'm so grateful that they'rewilling to talk with us about
(03:36):
the role that mental wellnesshas played in their life as they
have move with this journey ofcancer.
Thank you both for coming today.
Thanks for the invitation.
We're humbled.
Wonderful to be with you.
MJ, you're just two of myfavorite people.
I always start the podcastasking people to define mental
wellness for themselves, and howdo you know when you feel
(03:59):
mentally good?
Jay Caponigro (04:01):
Pre-cancer, maybe my definition would've been a
little different, but I'm notsure yet.
I'm still working through that.
I would've said a healthybalance, uh, physical health.
Definitely having a purpose,sense of direction.
Work is tied into my mentalhealth.
Being able to have a perspectiveof others, be part of who I am
(04:25):
and how I do what I do.
Balance with community, balancewith my own need for taking care
of myself.
I, I think those things are allpieces of it.
And then being able to know myfeelings.
I think this has become a littlebit clearer to me with cancer is
knowing my feelings when I'mhaving them and accepting them.
(04:47):
Lynn and I often talk these daysabout having waves and waves of
emotion.
It's not something that we canname.
Sometimes it's joy, sometimesit's sorrow.
Sometimes it's fear.
It's just a wave of emotion, Ithink more than ever.
I'm clear that's just part oflife.
That's something that.
I need to accept in myself andin Lynn and in those around me
(05:11):
as part of our acknowledging ourmental health.
These things happen whilepurpose is still really
important, work is still reallyimportant.
Naming feelings, sometimes itjust is overwhelming, but that's
okay.
We'll get through that together.
And that's where I thinkcommunity has really grown
tremendously in importance formy mental wellbeing.
Lyn Caponigro (05:33):
I think a big part of mental wellness for me
is knowing who to go to, when togo to them, and in recognizing
those waves, sometimes thosewaves can be all of those
emotions all at the same time,which is really an interesting
phenomena.
Laughing and crying at the sametime.
Who knew that you could feelthose both as strongly at the
same time, but then having thepeople around us, and that's one
(05:56):
thing that I really feel likehas been solidified.
Through this journey and throughthis whole experience is the
community and how important thatcommunity is, and knowing where
to go and knowing that there aremultiple people who, that we can
go to, we can go to each other,but then beyond each other we
have resources that we can goto.
When I'm mentally well, I amidentifying those people and
(06:19):
going to those people andgetting the support that I need.
So
MJ Murray Vachon LCSW (06:23):
part of what I hear you both
articulating so beautifully is.
It's really this one, two danceof super intense feelings that
you have to do something with.
I wonder if you could talk aboutwhat that feels like.
That super intense, overwhelmingsense of two paradoxical
(06:45):
feelings at the same time thatthen the other part of the dance
is, what the heck do I do withit?
How do you know how to dosomething with those over?
Jay Caponigro (06:55):
Warming feelings.
I think the Holy Spirit helps alot with that.
Some might call it serendipity.
Sometimes it's just grinding itout.
I love the word dance though.
I'm really becoming a fan ofthat word in terms of my
relationship with cancer.
It's funny that you use that.
A colleague and I were talkingthe other day and I was sharing
that I really hate this languageabout.
(07:16):
Fighting cancer and this war.
There's all sorts of verbs beingused to talk about cancer that
are negative.
And it is a dance.
We are playing a game.
It's not a game.
It is a dance.
Cancer is moving ahead and weare trying to stop.
We stop it a little cancer movesahead, can, then we nip it a
little bit and, and thatphysical feeling of being
(07:38):
manifest in the mental healthside of things is, I like the
language of dance because.
Sometimes I do step on Lynn'stoes still, and the emotions are
overwhelming either for me orfor her, but sometimes, wow.
We get in the swing and it feelsreally reassuring.
It feels comforting.
Lyn Caponigro (08:00):
I feel like there's a lot of grounding
that's involved.
That's great.
Yeah, there's a lot ofgrounding.
There's a lot of just breathingtogether, just being together,
celebrating when there'ssomething to really celebrate.
But yet, then just being therewith each other.
And it's not only us, we'vereally brought our children into
this, brought our children intothis dance and to the point
(08:22):
where we accept them whereverthey come from and whatever they
bring to this.
And so we're dancing with themto and through their emotions
and we check in with each one ofthem separately, and we check in
as a group.
And I think one of the partsthat we definitely held onto.
Is humor and how humor has arole in all of this has a role
(08:43):
in this dance and how we, we canbe having our fam FaceTime
together right after we'vegotten bad information and
someone's cracking some kind ofjoke to lighten the mood and to
say, Hey, we're stillcelebrating life.
We gotta find all sides of this.
Jay Caponigro (08:58):
I think humor has been very important.
The first night we found outwhat this was about, not the
depth of it all, but that therewas a real issue.
It was cancer and it wassignificant.
I.
I called a priest friend and Itold Lynn, I said, I need to
call this particular personbecause I need to say, I need to
Lyn Caponigro (09:15):
practice saying, I
Jay Caponigro (09:17):
need to practice saying what we have, and yeah,
exactly how do I talk aboutthis?
But how do I talk about it withsome humor?
It's been part of my life.
It's gonna have to be part ofthis journey, and I need to do
it with somebody I trust and whoI know has a good sense of humor
and can see the gravity of it,but also be able to see the
levity.
(09:37):
Or at least bring some levity toit.
And I think that's been helpful.
Back to the original questionabout how do we manage the
dance.
I said serendipity and I saidthe Holy Spirit, and sometimes
they're the same.
I was talking to a close familymember and they said something
that was offputting to me aboutcancer, and one thing we learned
(09:59):
early on was that we don't haveto solve everyone's grief for
what we're going through.
We don't have to solve howthey're feeling.
They do.
And I've had to remind a fewpeople along the way about that.
And this person being prettyclose, I've had to remind a
couple of times us feeling alittle angsty about that.
(10:21):
And then the next day I had ameeting with a colleague, and
the colleague is the person whobrought this dance language to
it, to the table, and I justthought, gosh, that just changes
my perspective and makes me feelvalidated.
Also gives me another way totalk about this and be more
positive about it and have aperspective that I can engage
(10:44):
people with in a way that's howwe've tried to live our lives
together.
Was that serendipity or was thatthe Holy Spirit bringing that
person into my life that day.
Yeah.
So that helps.
There are other days when.
We are coming back from a tripto this or that doctor and you
go, ah, what are we gonna managethis next step?
Lynn and I talk about thein-between stages.
(11:05):
It's one thing to be on atreatment and say, okay, let's
take this one for what it'sworth, the harder stages of this
dance, or when we don't knowwhat the next step is, and
knowing that there'll be a timewhen there won't be a next step.
That can be paralyzing if wedon't wanna hold each other's
hand through that, and thenreceive the love and the caring
(11:28):
and the prayers from so manypeople around us.
Being open to that is really, Ithink, a gift that I cherish.
MJ Murray Vachon LCSW (11:35):
A little known fact about mental wellness
is it's really spiritual, notnecessarily religious, but part
of what I hear you saying, Jay,beautifully, is from the very
beginning, you listen toyourself.
This little instinct, holySpirit, no synchronicity,
whatever one wants to call it,that says, call this person.
(11:58):
And from the beginning youconnected to the spirit of
laughter of humor, which ismedicinal.
There's actually studies thatshow that you also have
connected to the spirit ofcommunity first with each other.
It was never a question to me ifI would have one of you on,
because one of the things thatmy clients have taught me, I.
(12:19):
My dad taught me who also hadcancer was it is a community
experience and the dance of thecommunity that you are in is
always needing to be updated.
Re choreographed might be abetter way of saying it because
you are the only two who knowwhat you need for yourselves as
(12:43):
you move through this, how muchyou can take.
Care of other people.
How much you can give otherpeople is so intensely personal
and it's updated all the time.
I too, I don't like the cancerverbiage of fighting.
I know that we live in a superfighting kind of culture, but
that's not been my experience ofpeople who've been able to live
(13:05):
with cancer, where the dancemetaphor, I think is so much
healthier and really just leanspeople into.
Spirit, whether it's theirreligious spirit, their
spiritual spirit, or theirmental wellness spirit.
What were you gonna say, Lynn?
Lyn Caponigro (13:18):
I was just gonna say a very poignant moment for
me, a memory that I have fromthe very beginning.
The very first time that we wentto a scan and realized there was
something going on because theysent Jay back in another time,
and you could just tell from themedical personnel, I'm a nurse,
I know what the language is, Iknow what the body language is
when something's going on.
(13:39):
And Jay just reached over, heldmy hand and said, here we go.
Wow.
Yeah.
And it's been that.
It's been here we go onto thenext step.
Here we go.
Across the country.
Here we go.
Yeah.
Yeah.
MJ Murray Vachon LCSW (13:54):
It's how you started out, right?
And this is the in sickness andin health.
Yep.
When you said that, I imaginedhow we often felt on our wedding
day.
Oh, here we go.
It's the for better.
Yeah.
This is the for worst, it seemsto me that.
Under the, here we go, is atremendous amount of fear at
that stage and at every stagewhen you're walking through
(14:18):
this.
And I'm just wondering if youcan put into words, how do you
tame the fear?
Lyn Caponigro (14:23):
That's a really good question because I think we
have realized that we have adifferent fear.
We have different fears in this,and it took us a while to come
to that understanding.
That there are different, otherdifferent approaches, different
things that are going on foreach one of us.
A big part of taming the fear, Ithink, was finding ways to
(14:44):
prepare ourselves, gettingthings physically set, prepaying
for a funeral plot, funeral, andall those kind of things of
those kind of fears, financialfears, those kinds of things are
being addressed and continue tobe addressed.
And then there are other fearsthat have come along the way as
the fears come.
We try to address the physicalparts that we can deal with.
(15:04):
Are there still other fears thatcome up?
Absolutely.
There's a fear of watching himbe in pain.
Jay Caponigro (15:10):
What are you talking about?
I'm never in pain,
Lyn Caponigro (15:12):
but I know a fear for him is what is the pain
that's coming?
And he can speak to thathimself.
And that's where I come back tothat community.
There have been so many peoplebeen put in our path.
People that are from our past.
People that we have reconnectedto from our past, but we haven't
been as close to that.
We are now developing deeperrelationships with.
So there are people that areable to help me put that in
perspective.
(15:32):
Just being with them and lettingthem help me through that fear
is very, very powerful for me.
I think
Jay Caponigro (15:41):
fear is, obviously, you're absolutely
right, it's part of what weencounter day to day, but I
don't think I've ever put it inthe same.
Spaces gratitude to uh, kind ofcompare them.
So I guess better said is Ihaven't really considered the
relationship between fear andgratitude and how they work off
(16:04):
each other.
Or maybe in my case, gratitudehelps me deal with the fear.
We are in a clinical trial withsome of the best minds in the
world at the National Institutesfor Health.
How the heck did I get therefrom the south side of Chicago?
How did that happen?
(16:25):
That's more than serendipity,but I'm incredibly grateful for
it, and I'm grateful for a teamof clinicians that are thinking
with, I get the feeling they'reeven thinking about it at home.
Well, how great is that to beworking with somebody who sees
that we wanna make this happen?
Yes, we're working humor withthat relationship too, and we're
(16:47):
honest about the fears with themand.
I think we're all in it tofigure out a way to make this
better for somebody at somepoint.
And if it starts now, we'll beeven more grateful.
But I do think it's not givinginto the fear to be grateful.
It's not fighting the fear to begrateful.
It's just being overwhelmed bythat other really positive
(17:11):
emotion and praying for thatgratitude because sometimes you
don't feel it.
But it helps to keep resentmentat bay.
It helps to keep anger at bay.
I'm not afraid of being angryabout this.
I just don't find much value init, and it doesn't make me feel
better physically, and itdoesn't make me feel better
mentally.
But gratitude does that eases mydiscomfort.
(17:34):
I hadn't really considered that,that relationship.
Maybe I'm overdoing it, but it'sworking for me and prayer is
there all the time and theprayer is.
For gratitude, it's prayer isfor grace, and the prayer is for
yes, serenity, and that's animportant prayer for us right
now.
There's no prayer of why me,Lord, this happens to people all
(17:57):
over.
If what we've seen at Mayo, atour local oncology place and at
the federal level, people thatare suffering everywhere.
We're blessed to be in acommunity, to be suffering with
folks that connect with us inthis suffering.
Lyn Caponigro (18:10):
Speaking to that piece that you said about the
why me, how is it that I, fromSouth side of Chicago, from this
working class family, am now atthe National Institute of Health
getting treatment, and I thinkso much of that is part of that
serendipity or part of that,what has been placed along our
way?
Why am I a nurse?
How did I get to be to thatpoint where I can read through
(18:30):
and sift through a lot of theinformation that I'm looking
for?
Why did my brother find thisarticle that said, here's a
medication that might work foryou?
There's just so many differentpieces along the way that I feel
like are leading us towards thisgreater purpose.
We've often felt that sense of agreater purpose.
I.
I think that really helps withthe fear is that knowing that
(18:50):
there's a reason, there is somegreater reason why all of this
is happening, and maybe we canbe a part of that.
Maybe we can use our gifts andthe people that have been along
our path in order to help us getto that, to see some meaning in
all of this.
That
Jay Caponigro (19:04):
is so true.
I think you remind me of storiesthat we've heard from people who
have experienced cancer andother serious illnesses, and
they've said, you need anadvocate.
Make sure you have an advocategoing in.
One of the things I'm sograteful for is your medical
training, but also your justdogged determination and
(19:25):
persistence, and you askquestions that I wouldn't ask
early on.
I, I almost wanted to shush.
You don't ask that question.
And I was smart enough after 30some years, not to shush you,
but also smart enough to watchin awe to just sit back and let
you lead.
Really the wisdom there, if Ihad any, it was.
(19:47):
Watch you lead and advocate and,and then to admire you because
the doctors were saying thingslike, yeah, we should try that,
or let's call somebody aboutthat.
Or, oh, I know somebody whocould help.
When I said, arriving at NIH issomething I'm grateful for.
To me, it wasn't serendipity.
(20:07):
I agree it was a path ofrelationships that connected to
relationships, but you were atthe beginning of that and in the
middle of that and continue tobe.
A companion and a leader.
And in that I'm very grateful ina selfish way.
Um, I know it.
There's a reason you're doing itthat is for you too.
I like having you around.
(20:28):
Thank you for jumping in thatand our kids like having you
around, but I do worry it's hardon you too and taking that
responsibility, but I am
MJ Murray Vachon LCSW (20:34):
very grateful.
But part of what I hear you bothsaying, and Lynn, you're a
professor.
This isn't about theory, but itis about theory.
Right.
And Jay, in your earliest daysyou were a community activist
and this, it's an activistproject that is for your own
wellness, but hopefully for thewellness of others.
(20:55):
But you said so many wise thingsthat I want to do my best to
mirror back because I don't wantour listeners to miss all this
wisdom.
We started with fear.
We move to anger what you saidyou have learned in real life.
Jay activism often starts out ofanger, this is not correct.
(21:18):
This shouldn't be this way.
What you have learned is angerisn't life giving.
I can flip the fear into anger,or I could hold and dance with
the fear.
You find out that when I dancewith it, I actually end up
finding gratitude.
Lynn, I think you're saying thesame thing.
You're dancing.
(21:38):
With the fear, but for you, itmakes you an advocate that
advocacy has really been a danceof knowledge, and the knowledge
leads you to places that keephaving these connections and
these aha moments, theseepiphanies that make all of this
(21:59):
tolerable, even life-giving andsustainable because you're
really doing all this Inner workwhile you're very busy.
I.
Doing lots of outer work.
You're using your whole selvesand you're using your whole
relationship with each other.
Jay, I really am humbled by yourability to let go and to let
(22:21):
Lynn lead and to not shush awoman who can't be shushed
anyways, you know that.
I know you can't.
Mm-hmm.
But I think that so much of adiagnosis like this is, can we
accept our humble place in it?
And humility isn't being false.
Humility.
Humility is I have gifts and howdo I lean into them for the
(22:42):
benefit of all, and that's abeautiful dance when we use our
gifts for the benefit of all.
Jay Caponigro (22:48):
There's so much in there that you just shared.
In summary, thank you forreflecting that back with us.
A couple of reactions.
I spent 10 years as a communityorganizer, as you said,
organizing in the way that Ilearned it and practiced it and
continue to use it in my workis.
Understanding that anger is avery important motivator and
(23:10):
driver, but hot anger leads torage and flames out.
Cold anger is a durable andlonger term source to help you
reach your self-interest.
In some ways, that's how I'mpracticing being angry on this
personal journey.
(23:30):
My work in organizing is in thepublic world of J Cab Negro.
It's not in my private world.
Two, the principles don't match.
They don't often translate over.
Sometimes they do.
But cold anger a much healthierway to live.
'cause you recognize that thereare things that we should be
angry about.
(23:52):
But if you are stuck in theanger part of it, you flame out.
I've had wiser people than meexpress it.
Part of what we're dealing within this much more private
situation.
The letting go piece is reallytricky.
Talking at the same two levelsof life on the public side.
There's some things I have tolet go of too, and that's really
(24:14):
hard because I've built my lifearound my work and my work is
built around relationships inthe community and in the wider
Notre Dame community.
I find that I have to, part ofwhat's great about my.
Diagnosis and this past year hasbeen my employer's been able to
find a way for me to continue towork.
(24:36):
That has been really meaningfulto me, to be able to tie up
loose ends, to be able to maketransitions, to build some
redundancy in my role.
I guess the question I have iswhether I still have.
Some room or energy to growsomething or build something.
I've built a lot.
I'm a builder more than I am amaintainer.
(24:56):
That's just what I've come toknow about myself.
My boss in particular has reallygiven me some space to continue
to be me in that role, eventhough I have to take time out
to travel or take time out forcertain treatments.
But letting go of some of thebigger things I've built when I
know it's time I've got to letthose go to somebody else, uh,
has been another humbling.
Part of this, but it's necessaryand I realize it, and the same
(25:20):
in the private space of knowingthat there's certain things that
I need to do differently with myfamily now, or I physically
can't do the same way I didbefore.
So I need to be in a differentrole.
Finding the new role, findingthe new way that I can be
productive and contribute.
That's been trickier.
That sometimes gets me in afunk, but I think that.
(25:43):
I've been pulled along in somenice ways by my family,
especially the kids, like youtalked about, Len Workwise.
There've just been some caringrelationships that have helped
me as well.
Those are why.
It just comes back to that senseof gratitude around our
community in so many different,at so many different levels.
MJ Murray Vachon LCSW (26:01):
Can you talk a little bit about how you
decided as a couple to reallyintegrate your children into
this?
Lyn Caponigro (26:09):
MJ.
Part of it was the timing of itall.
We were preparing for our oldestson's wedding two weeks after we
got the Diagno.
Well, two weeks before the veryfirst scan, we didn't even have
a diagnosis yet.
Jay was just going to the doctor'cause he had a little extra
gas.
We knew we were getting readyfor this big wedding out of
town.
We were all going to Texas to gocelebrate a wedding.
(26:31):
So we knew we had to dosomething.
We knew we had to address it.
We knew we were going to be atthe wedding if we could, if in
any possible way we could.
And very quickly we decided thatwe needed to have the kids be a
part of it.
We very quickly decided weneeded to invite them into and
invite the parents of ourdaughter-in-law into this
conversation.
(26:51):
We were about to have this hugeparty together.
There was no way we were gonnahold back.
There was no way we were gonnakeep back from anybody this was
going on.
They knew that he was going tothe doctor.
Very quickly we got theminvolved and started with our
sons in-laws was the very firstpeople that we told.
They were very supportive.
They said, yes, our daughterwould want to know, and we just,
(27:14):
we made it this big party.
Jay Caponigro (27:16):
We were concerned that we would go to this big
event and there'd be the.
Son and mom dance and there'd bedad on the sideline bawling his
eyes out and people would lookand go, well, that seems a
little over sentimental.
Why is he crying so hard?
Or that mom would have a similarexperience at some other level
(27:37):
of the ceremony.
That would be the best casescenario.
The worst case would be thatwe'd be withdrawn or distant or
not connecting with them in thismost amazing.
Moment of their lives.
I
Lyn Caponigro (27:49):
think you talked to that priest, the very first
person you called and you said,I need to figure out what I'm
gonna do.
How do we address this with ourchildren?
And I think the response wasinvite
Jay Caponigro (28:00):
them.
He, he had an experience and hefelt badly.
He wasn't in the moment with, hehad a particular.
Event and
Lyn Caponigro (28:05):
at a wedding.
I believe he was at a weddingtoo.
Jay Caponigro (28:07):
Yeah.
We, we wanted to be in themoment, not for selfish reasons.
We really wanted to have thathonesty, which we've practiced
with them.
Fortunately, we had a coupleweeks so that they could digest
it, at least be able to take adeep breath and know that we
really wanted them to celebratehard.
Might have been a little hard, alittle too hard for a couple of
them, but we did.
We just wanted them also to knowif we had a few more tears.
(28:31):
It wasn't'cause we were unhappy,they were getting married in a
lot of ways.
Lyn Caponigro (28:34):
It was really a gift to have that right at that
moment.
It was such a celebration.
We were surrounded by so manywonderfully supportive people.
It was Jay's birthday and therehearsal dinner night even that
we had this birthday celebrationtogether.
That was just a beautiful.
A beautiful celebration.
It was us all coming together.
(28:55):
Everyone there knew.
There was no one who didn'tknow.
We didn't want it to be the talkof the evening, but everyone
knew so that everyone could beaware, could be sensitive, could
not be offended if anyone had towalk away, those kind of things.
So
MJ Murray Vachon LCSW (29:08):
that just felt very supported.
It really goes to what you saidearlier, Lynn, that capacity to
carry multiple intense,difficult emotions all at the
same time.
And be joyful.
I think that's a beautifulexample and something, when you
use the word invite, that's sosoft, it's so different than
(29:33):
tell we're going to invite ourchildren into this experience.
You have four children.
I know them.
They're awesome, and they'rereally different from each
other.
So when you invite them, theyget to step in.
In their own way, in their owntime and figure out how they
dance with this.
And you're also saying to them,we can do really hard things.
(29:55):
We can have the best moment ofyour life at a wedding and we
can hold this very scaryuncertainty.
I love the definition ofcourage, where it isn't avoiding
fear, it's holding fear anddoing it anyways.
And that was really courageous.
Really courageous to say, as afamily, we can all step into
this in our own way.
It's beautiful.
(30:16):
That's a great definition.
Thanks.
And the metaphor that everyoneneeded a good party.
Yeah.
Everyone needed to dance.
Lyn Caponigro (30:23):
Yeah, we did.
We did.
We danced.
MJ Murray Vachon LCSW (30:27):
How joyful.
Yep.
What do you know about life nowthat you didn't know 18 months
ago?
Lyn Caponigro (30:34):
I think one of the big things that I've learned
over these past 18 months is thetrust in the dance and the trust
in the community, and how much Ican count on that, and how
resourceful and resilient.
Giving people are, it's justamazing to me how there's these
open offers of help from people.
(30:55):
No one is ever offended if I sayno.
People are often veryencouraging me say Yes, but I've
really learned to trust in thatmore than I ever did before.
Trust in the joy that comes outof all of it, and in the
goodness that comes out of allof it.
Jay Caponigro (31:13):
Boy, that's an interesting question.
My mind goes straight to all ofthese little things that I've
learned that are more about, oh,what I've learned about cancer.
Oh, what I've learned aboutpeople's health or what I've
learned about my own body.
I like how you responded morebroadly.
A couple things come to mind.
One is that I don't know wherethis cancer came from.
(31:33):
It's true that I probably dranktoo much Mountain Dew growing
up, but I don't think that's thecause of my cancer.
As you said at the opening,healthy.
And exercising regularly andplaying hockey and playing
racquetball and playingbaseball, and I was doing things
to take care of my body, whichalso brought me joy, and I had
(31:55):
lots of little aches and painsthat I chuckle about now, but
you know, I was healthy.
Those parts of my body thataren't affected by cancer are
still pine for that.
In broader terms, it's good totake care of yourself and to pay
attention.
And to be healthy physically,because that's helping me do
(32:17):
things now, to get throughmedications and treatments, to
give doctors confidence that Icould try new things and, and
that will last for a littlewhile anyway, but that's still
something that I'm bringing fromwhat, how I lived my life.
I would say.
The other thing is, and I don'tmean this to be instrumental,
but.
(32:38):
We've invested a lot inrelationships over time, and I
didn't even realize how muchthat was happening all of our
time here in this community.
My work was relationships.
I don't wanna say take it forgranted, but there's a lot of
blending of personal and work.
There was being on the kidssoccer field on the sidelines,
(33:00):
and there was somebody youworked with on the sidelines
too, so it's.
Mixing that way where it ispersonal and public and a lot
more personal than I realizeduntil this came to be.
I think that's probably the mostimportant thing I've learned
about life is investing inrelationships and being kind.
There's real value in that.
(33:23):
It's not just that you're gonnaget repaid in some way if you
get cancer, it's more Wow, this.
Feels really good.
When you hear from somebody,it's motivating and it's
sustaining and it's affirming.
I hope that in some way mychildren also feel that and
learn that, and I hope that withthe time that I have, I am more
(33:47):
intentional about authenticrelationships, even though I
feel like that's been somethingimportant to me forever.
I just feel like, wow, there'sanother knot I can aim for,
maybe a little higher orsomething.
MJ Murray Vachon LCSW (33:58):
I would say that caper Negros are
relationally affluent humans.
Lyn Caponigro (34:03):
There's another piece of this that becomes a
burden that we have realizedthat all of those people that
love and care for us so much arehurting through this too.
MJ Murray Vachon LCSW (34:12):
Yeah.
Lyn Caponigro (34:13):
That's really, it's hard to, it's hard to share
that information when we knowthat it's hurting someone.
Jay Caponigro (34:22):
Yeah.
It was great to post that notesaying.
Mechanist is really doing thisgreat number on Jay's tumors.
Stuff's shrinking and I feelgreat.
And then a month and a halflater, it's all going the
opposite direction, which weknew it would.
The doctor said it's gonna lastmaybe two months, maybe it's
gonna last six months.
We have no idea.
We jumped at it.
Anyway, the first post was greatand everyone's sending us
(34:43):
messages and they're very happy.
And on the second post we'reabout to send, we're going, oh,
we can't do this to people.
We really raised the questionfor me of hope.
What is hope about?
Do we dare.
This is where you can get allphilosophical, theological, and
all of my academic stuff couldcome out, which I don't want to
do, but it's, yeah, do I dare tohope in the midst of all of this
(35:05):
because I could be hurt?
We just raised the level of hopefor so many other people.
That's the responsibility ofburden.
We knew we were doing it, but wefelt, nope, they've asked to be
on this journey.
We're gonna dive in becausewithout hope, why would we do
any of this?
We have a greater hope that isbeyond cancer, that moves us as
(35:28):
a family and as a couple, whichhas always been at the center of
our lives.
So we're gonna be hopeful andyep, we're gonna write that
second post when we have to.
And we, it was hard.
It's
Lyn Caponigro (35:41):
hard, but yet there's still so much support
around it.
Like you said, we've invitedpeople into the journey.
We have invited people to knowand to have the information.
We're not requiring it.
We're not demanding it fromanyone.
They are going themselves andthey are seeking out this
information.
Yeah.
Would they love to see morehappy posts?
(36:01):
Of course they would, because weknow we would too, but yet they
are still there.
Jay Caponigro (36:06):
It's a great post of someone who said, we're an
Easter people with living in agood Friday world.
And that just nailed it.
That was great because yes,we're living with the Easter
Hope.
Yeah.
I can't say it better and theywould like to see it better news
'cause they love us and we soappreciate that they would be
disappointed.
MJ Murray Vachon LCSW (36:23):
This is a hard question to ask, but how
has the last year changed howyou think about death, how you
think about Good Friday?
Jay Caponigro (36:30):
It's never been lost on me that we're all going
to die.
The fear is how we're going todie.
How much of it is on our ownterms to the degree that we can
play any role in it, I'm at somelevel very fortunate to be able
to have some time to think aboutmy death and prepare for it.
(36:53):
The way that Lynn talked aboutthinking about where do we want
to be buried, we're building andearned, or things that are
meaningful to me about death,it.
Certainly punctuates thepreciousness of life and has me
thinking more about how do Iwant to spend this next weekend?
(37:14):
What's the balance betweenpersonal and work?
What's the balance betweenfinancial and other pressures or
other desires?
Yeah.
I lost my train of thoughtthought on that one.
Lyn Caponigro (37:26):
I think there's really been a sense of the
preciousness of life that hasreally been renewed.
We had the experience of myfather passing away recently.
That has been a death experienceamidst this other experience
that we're having.
He was already not himself.
He was suffering throughdementia.
You know, there was a longgoodbye, right?
He's, we've been saying goodbyefor years.
(37:46):
There's a piece in his passing.
He wasn't happy any longer.
So I'm wondering what part ofthat will we go through as
cancer progresses?
So there's a little bit of fearthere, but yet there's still,
uh, many people around us that Iknow that will help us through
that.
So I have that trust that therewill people be people to help us
through that.
There are moments where it doesfeel like it's just not time
(38:10):
yet.
Jay Caponigro (38:11):
Yeah, I think we felt that a lot at the
beginning, not knowing what thisdiagnosis meant, specifically
knowing it was very dire, butlooking at each other and
saying, oh, we just bought thecamper.
Oh wait, no, that's not right.
We've just got two kids marriedoff.
And what about grandkids?
Now that sense that we weregetting ready for a new phase in
(38:32):
our relationship or we, we wereevolving into that new phase
already.
We were practicing it, we wereputting it out and trying it
out, and there was a lot ofexcitement about that.
And so death feels too soon inthat way.
But from the perspective of.
The world around us.
I, I am hit with the gratitudeagain of, wow, how did we get
(38:53):
this far and have so much in ourlives already that we can be
looking back on and reflectiveof and grateful for.
And I don't want it to end, butI don't want be suffering in a
way that it's affecting all thequality of life of those around
me if I can't really be withthem.
(39:13):
I think it's contrasted in aninteresting way with the fact
that our.
Daughter and son-in-law arepregnant and wait any week now
to have our first grandchild.
So all of what they'reexperiencing as new parents to
be is just so fun.
I think about the excitement ofa new child coming into our
(39:37):
family.
God willing, it hits hard on thepoint of the preciousness of
life and how we have to live itfully and.
Until I can't, we foundourselves at one point, maybe
three or four months into thisdiagnosis and Lynn was driving
more carefully.
She admitted to saying it.
I was thinking it and she's,yeah.
'cause we can't have both of usgoing at the same time for the
(39:58):
kids' sake or, and then I wasthinking, no, you can't go first
'cause I need you.
There are so many differentthings.
So yes, please drive morecarefully.
Not that she wasn't a carefuldriver, but the full stop at the
stop sign.
You're doing a lot more driving.
At that point, it was a littlebit of a reminder, yes, maybe we
don't take things so forgranted.
Let's be just a little morecautious.
(40:19):
I appreciate the moments.
I think I've been a lot morepictures taken of me that
bothers the heck out of me froma old Jay perspective, but I
also know it's really importantto people.
It's important to me now,actually, it's become more
important to me that I be inthose photos.
When I think about thegrandchild especially, I don't
(40:39):
know that I focus so much ondeath.
The real question that you askedis just more about the real
appreciation and understandingof how much of a gift our life
has been and how much of a giftlife can be, and we really need
to hold that, enhance it, andnot just respect it, but enhance
it in all its forms, becausethat's the way we've tried to
live our lives and that's how Iwanna go out.
Lyn Caponigro (40:59):
Yeah.
One of the precious gifts thatwe've been given of this time is
the opportunity for people toshare stories of interaction
with our family interaction justwith Jay, or to share their own
personal stories.
And there's one in particularthat's studying standing out to
me right now that is a friendwho shared a story that her
favorite grandparent.
(41:20):
Was the grandparent that wasnever there because she heard
the stories of this grandparent.
What a gift.
I feel to even have that littlepiece of that they could know
their grandparent just from thestories that have been shared.
And boy, we've been reallycollecting the stories now.
So another gift that we've hadof this past year
MJ Murray Vachon LCSW (41:40):
is just having those stories.
Yeah, this has been so powerful.
I knew it would be powerful, butthis is 10 times more than.
What I knew, which was a reallyhigh expectation.
Is there anything, just inclosing, you feel I'd like to
say that
Jay Caponigro (41:53):
No, I think we've covered a lot of ground.
Thank you for the opportunity toshare.
Lyn Caponigro (41:58):
I think I just wanna iterate, reiterate that I
just feel like this has all beencoming to us as part of this
journey.
I'm so grateful that we havebeen able to take advantage of
and to really engage in all ofthese different pieces that have
been so life-giving to us.
Yet supportive of this wholecommunity that is surrounding
MJ Murray Vachon LCSW (42:19):
us.
I really wanna thank you for therole models you've always been.
This is not a new role for thetwo of you, but I think we as a
culture really struggle whenthings don't go our way, whether
it's illness, whether it's anelection, whether it's not
getting into grad school orNotre Dame.
And we need role models forpeople who opt to dance.
(42:43):
And find that, oh my God, Ididn't know I could hold such
terror and such joy all at onewedding reception to move
through a year where you reallyare practicing what you always
preached.
It's just a different type ofdance floor.
I'm really wanna thank you and Iknow that I'm not alone in that.
(43:04):
I read the Caring Bridge posts.
Thank you so much.
Thank you for being part of thatteam.
Of course this could all fallapart tomorrow.
What a beautiful conversation.
I doubt any of us listening to,Jay and Lynn missed the paradox
that they really didn't talk tous much about dying or cancer,
but really about living.
(43:26):
So here are my Inner Challengeinsights, thanks to their
wisdom.
Insight number one, I lovedJay's line when he first heard
about his diagnosis.
I need to call my friend andpractice saying I have cancer.
From the beginning, he took ahumble stance.
I don't know how to do this, soI will learn.
(43:48):
How do I learn?
I practice insight number two inthe caep Negros words.
Here we go.
We don't have to solve this.
We have different fears.
We are always learning to be inrelationship with each other.
These, my listeners are dancingwords.
(44:11):
We can fight cancer or we candance with cancer.
For those who choose to dance, Iimagine that their heart is much
more open to their partner.
After all, who wants to dancealone?
Insight number three.
My favorite line from Jay wasthis from, I'm not afraid of
being angry.
(44:31):
I just don't find much value init.
Insight number four.
A terminal illness confronts usonce again with the question,
who am I?
It's not easy to let go of work,especially when it's meaningful
and connects to so many in thecommunity.
My hat's off to the Universityof Notre Dame, who once again
has been so supportive to one ofits employees and to Jay's boss
(44:55):
for being flexible, adaptive,and coherent.
As Jane moves through thisprocess of answering the
question, who am I now that I'msick?
This gives him energy andstability as he and his family
navigate these challengingmonths for one to stay mentally
well during an illness.
(45:16):
The role the employer takes onis huge.
In my clinical practice.
I have seen the difference andhas nothing to do with the luck
of the Irish, but a realcommitment to its employees.
Insight number five.
In my career, I've had manyconversations with clients that
begin with this question, howshould I tell my kids?
(45:40):
From now on, I will encourageinviting, not telling insight.
Number six.
This is my last insight and it'sa bit long, but please bear with
me because I think what welearned from Jay and Lynn has a
profound message for mentalwellness.
So.
(46:01):
Number six.
What if our culture's number onevalue was relational affluence,
where our main ambition was notmoney importance or winning, but
rather a high RAS score.
You know, relational affluencescore.
We would look at people like Jayand Lynn, like we do star
athletes, people to admire fortheir relational affluence.
(46:25):
People we are glad to have onour team, you know, team Earth.
If relational affluence was thenumber one goal of an earthling,
we would coup with babies andhope they'd grow up to be kind
and honest and real contributorsto the wellbeing of others, even
at times putting their own wantsand needs.
Second, as parents, we'd losesleep if our child was being
(46:48):
selfish or was prone to fits ofanger because we would wisely
know such behavior might bringdown their RAS score if they
carry it into adulthood.
We'd cheer for the neighbor kidwho got the last spot on the
team, or maybe the lead in theplay.
Even though we knew our childwas disappointed because we
understood that a victory forour neighbor was really a
(47:12):
victory for our own child.
The Cabe Negroes, the wholefamily are relationally
affluent.
This did not start because of acancer diagnosis, but cancer
made it clear to them that allthe love and effort they had
poured into their family.
Their work, their, theircommunity, their school, their
church has come back in spadesthis past year.
(47:36):
Endless meals, pumpkins paintedpurple, palms left on the picnic
table, walks with friends anddoctors who really, really care.
While not expecting this, theycould look back and see how it
happened.
This type of support does notalways happen because it must be
nurtured.
(47:56):
It is what we as humans need.
We are not wired for large bankaccounts or championship
trophies.
These are nice, but what we'rewired for is human connection
and support.
Jay and Lynn are wise in themiddle of all this to hope that
their children all in theirtwenties are taking notice of
(48:18):
this inheritance.
I hope the same for my children.
I hope the same for yours.
In a world where we haveunintentionally over-focused on
competition, starting as earlyas age three, and given our
children phones that havereplaced much of the
face-to-face time, previousgenerations have spent with
(48:38):
friends, I worry that all of ourchildren are being robbed of
their rightful inheritance,relational affluence.
Many say we have a mental healthcrisis in this country.
I of all people am notdisagreeing, but often I think
it's a friendship crisis, solet's put the phones away and
(49:01):
play a board game after dinner.
Invite our kids to come out oftheir rooms and have their
friends over and bring back thepotluck.
We need each other.
It has nothing to do withcancer.
Thanks for listening to thismost special episode.
I'll be back tomorrow with myregular episodes of creating
(49:22):
Midlife Calm.
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