June 1, 2025 • 32 mins
Dan and Sarah welcome back to the podcast two previous guests, Dr. Bob Macauley and Dr. Chris Adrian, to discuss writing books about pediatric palliative care, as well as how our clinical practice, narratives, and personal trauma can all interact in sometimes unexpected ways.
Content warning: This episode includes discussion of child sexual abuse.
Click the link here to buy Dr. Macauley's new book: Because I Knew You
Proceeds from book sales benefit the OHSU Pediatric Palliative Care Team and Darkness to Light (https://www.d2l.org/), an organization dedicated to ending child sexual abuse.
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Episode Transcript
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Sarah Dabagh (00:00):
Dan. Hi. This is Sarah, and this is Dan, and we'd
(00:04):
like to welcome you to pedia,
Daniel Eison (00:06):
a monthly podcast about all things pediatric
palliative care as always,
Sarah Dabagh (00:11):
the views on this episode are ours alone and do
not represent our respectiveorganizations, and they do not
constitute medical advice. Thestory
Daniel Eison (00:17):
of how this episode came to be is a little
bit different than a lot of ourother episodes. We got an email
from former guest of thepodcast, Dr Bob McCauley, and he
told us that, very excitingly,he has a book coming out. The
book,
Sarah Dabagh (00:32):
which I believe is coming out on June 4, is called
because I knew you how someremarkable Sick Kids healed a
doctor's soul. And Dr McCauleywas kind enough to send us some
advanced copies, and as we werereading through them, certain
themes emerged, certain thoughtsemerged, and the idea of this
episode took a little bit of ashift, and so we're going to let
our guests speak for themselves,but we've invited on two friends
(00:55):
of the podcast, Dr Macaulay andDr Adrian, who have quite A few
things in common, including bothbeing now published authors who
have written about their ownwork doing pediatric palliative
care, and we're going to havethem sort of come on and
introduce themselves. But beforewe do, it was important for us
to say to our listeners thatthere is a trigger warning for
this episode in which we will beaddressing themes regarding the
(01:18):
childhood sexual abuse. You
Bob Macauley (01:24):
My name is Bob McCauley, and I'm a pediatric
palliative care doc at OregonHealth and Science University in
Portland, Oregon.
Chris Adrian (01:31):
And I'm Chris Adrian. I'm a pediatric
palliative care doctor atChildren's Hospital Los Angeles.
Sarah Dabagh (01:36):
Thank you both again for coming. I would love
to start Bob, one of the reasonswe're here today is because you
have a book coming out. I'd lovefor you to tell our audience a
little bit about what the bookis, when it's coming out, and
how it came to you to write it.
Well, it's
Bob Macauley (01:51):
great to be here.
Thank you for the invitation.
Sarah and Dan and to my friendChris, it's nice to be here with
you. So the book is calledbecause I knew you how some
remarkable Sick Kids healed adoctor's soul. And the genesis
of that was about now five yearsago or so, and I had been
reading a bunch of books in theadult palliative care world,
(02:12):
really beautiful books aboutadult palliative care docs and
the patients that they had takencare of. Specifically, I think
of that good night by SunitaPuri, which is a beautiful book,
and I kept thinking to myself asI read these books over a period
of time that pediatricpalliative care is different. It
has a lot of similarities, butit is really unique, as we all
know on this call. And so Ithought about some patients that
(02:35):
meant a lot to me, impacted mylife, and illustrated maybe some
themes that were missing inbooks about adults. And the next
day, I thought a few morepatients, and a couple of days
later, I had enough that Istarted making notes. And then I
thought to myself, this mighthave some legs. So I reached out
to the parents of those patientsthat I was still in touch with,
(02:58):
most of the kids who werementioned in the book. And I
asked them, I said, I'm thinkingabout writing about your child
and my experience, would that beokay with you? And with one
exception, they said yes. Andthen we had some very profound
zoom calls, mostly duringpandemic, and a lot of the time
that they were far away, and weremembered about their child
(03:21):
together, and then I wrote thevarious chapters and circled
back and made sure that I goteverything as right as I could.
Then it became a labor of loveto find a way to get it
published. So a little kernelthat I overlooked which anyone
who wants to do this should notoverlook it. It's always better
to get a publisher before youwrite the book than to write a
book about a potentiallypowerful and not overly
(03:44):
attractive in the marketplacesubject, and then try to find a
publisher. So I did itbackwards. It happened to work
out. I do not recommend it to myfamily and friends.
Daniel Eison (03:53):
I almost want to just hear Chris's voice now on
this as someone else withexpertise in this area, you've
also been in in this world ofwriting about, how is it you put
it Bob, a powerful andpotentially not market ready
subject. So Chris, what's yourtake on that?
Unknown (04:09):
My solution to the problem of getting someone
interested in a book that'sgoing to brighten, terrify or
despair at the market is to baitand switch, to propose one book
and then turn in another book,which is the book I'm working on
now, was was supposed to be afairly anodyne collection of
perspective pieces about medicaleducation, and has turned
instead into a memoir of medicaleducation that is mostly about
(04:33):
grief, suffering and a visceralrendering of a subject that I
kept at arm's length in fictionpreviously, but now I've turned
to in a kind of quasi memoir.
They're kind of always writtenabout, about kids in trouble in
in one way or another, whenfaced with the challenge of of
joining the kind of endeavorthat Bob was describing around
how you know that those booksare comparatively all over the
(04:54):
place in the adult palliativeworld, but they've been fewer of
them in. I think, in the pedsworld, books that try and bring
an understanding of pediatricpalliative care and what it's
like to be a clinician, to beone, or why we are clinicians.
I'm interested
Sarah Dabagh (05:11):
in this description of, sort of, this
unintentional memoir, and thistransition into a memoir as you
write about kids in trouble andBob, I wonder if you can touch
on this too. You started yourdescription of writing this book
is talking about the stories ofother people and other children,
but it's impossible not to leaveyour own story in in some way,
(05:32):
as you piece those storiestogether into a novel. And I'm
wondering if you can touch onwhat telling your own story as
part of this was like, yeah, it
Bob Macauley (05:41):
was an interesting road in the sense that the early
versions are significantlydifferent than the final
version, and the reason for thatis I shared the manuscript. Took
me about two years or so to putit together, and then I shared
it with a few people whoseopinions I really trust, and
every single one said the samething. They said that this book
(06:05):
needs more of your as in myvoice in it, because we in the
practice of pediatric palliativecare, to state the obvious, we
engage in such profoundrelationships and situations
that I think we can't help butbe changed. And so if we take a
more kind of removed, analyticalview, we don't really do justice
(06:28):
to the power of the stories. Andso with that invitation, I
started diving a little bitdeeper, and it was really only
in the course of writing thebook, although it was not the
purpose of writing the book, buta sort of side effect, if you
will, that I began to tietogether some big loose ends in
my own life that what people ifthey choose to read the book
(06:52):
that's come through so muchediting over so much time that
hopefully those strands havebeen tied together in the text,
but it took me a long time totie them together in my own
mind, to put them to paper, tounderstand what it was about the
work that we do that drew me toit, and to understand how much
(07:16):
the kids and families that Ihave treated and come to know
and truly been inspired by havechanged my life. And so it was
really about the 30th revisionat the end, when I finally put
it all together. That ifsomebody were to say, like, can
you condense this book into asentence or two, I'd say it's a
(07:38):
thank you note, like it's athank you note to these kids and
their families for showing mewhat the goodness and the
courage that human beings arecapable of that resonates
Unknown (07:52):
for me, in particular, that gratitude for being in a
place where somebody else showsyou the best in the world,
having experienced the worst ofit, and something that You know,
that I struggle with, even justas a clinician, and it's
probably true of any for anyclinician, but maybe
particularly for us, thatpresence is so much a part of
our clinical method that if youcan't really be present in the
room with somebody, you're goingto miss something, or you'll be
(08:14):
impaired in your process or inyour method. And there is
something about about not beingable to be fully present with my
own history as child, or as achild who encountered the worst
of the world or the worst ofwhat people have to offer each
other, that made it hard for meto be present for the kids and
families I was working with. Ina funny way, there was a
(08:36):
strength I think I borrowed toface my own stuff that in turn
let me come back into the roomto be present for them and help
them. And it was this, you know,this very surprising and
astonishing, somewhat painful atfirst circle, but once it got
going, it felt like a way intothe work that was finally
sustainable. Like no one's gonnaremember what a self winding
watch was, but there used to bewatches that they wound just
(08:57):
when you raised your your handup to look at the watch style
that felt like that.
Daniel Eison (09:03):
What both of you have started to talk about, but
we've spoken about, justimplicitly so far, is you've
both made mention of personallyexperiencing some of the worst
of what the world has to offer,and how that has influenced the
work that you do, the writingthat you do, and I'm, I'm
(09:23):
wondering if you can talk moreabout the way that watch wines
itself. I appreciate
Bob Macauley (09:27):
that. Dan, so for me, and I'm sort of used to kind
of more of a lead up to this, Idon't really start here, and so
I appreciate the chance to sortof have some conversation
beforehand. But so I wassexually abused as a child, and
I think that it's taken me along time to understand how that
(09:50):
has impacted my life. Lookingback, the pieces fit together
actually really well. I justcouldn't put them together very
quickly, because I think thatwhen. Someone experiences
trauma, it throws a whole lot ofvariables into the mix, and
oftentimes impacts your abilityto see and understand and I
think that the early drafts ofthe book, especially, I didn't
(10:13):
go into that quite as much, ornot nearly as much, for a couple
of reasons. One is, I think Iwas trying to protect the reader
just a smidge like, this is astory in the book of 18 or 20
kids I've taken care of. Most ofthem did not survive. And so I
could imagine somebody readingthat being like, well, I can't
get any sadder than that, and mebeing like, well, actually,
(10:33):
don't. Don't sell me short. Ican. I can make it sadder than
that. That just seemed likepiling on. The other piece too,
that I really struggled with,and continue to struggle with,
is so I had something happenedto me that was really bad. I
don't want to equate that with aparent losing a child. So are
(10:54):
they both sad? Yes, this is nota competition, and if it were, I
would lose hands down seven daysa week. I don't ever want to be
put in the same category asparents who have gone through
what the read parents have gonethrough. I sometimes say that I
experienced a grief adjacentworld compared to what they
experience. Do I have a sense ofwhat they go through? I think
(11:17):
maybe, but nothing close to whatthey have experienced in losing
a child, and it was really inthe conversations that I had
with the parents that I spokewith in writing the book, that I
think implicitly, because thisdidn't really, I didn't share my
own story with them, but we weretalking about their stories
implicitly, I think they gave mepermission to share my own
(11:38):
story, because I Don't thinkparents want to have a corner on
that market. It's not likethey're out there telling
everybody when someone else hasa hard day, well, you don't know
what a hard day is. I know whata hard like. I've never
experienced a brief parent dothat when they encounter
somebody who's having a bad dayin that person's own world,
whether that's like running latefor work or something not that
(12:01):
big a deal. They have compassionfor that person, like their goal
is not to win the contest of whohurts the most. Their goal is to
try to make the world hurt alittle less. When I saw that,
then I said, I think I can speakfrom the heart more than I did
early on.
Unknown (12:17):
I guess I can say Bob and I are not in the same club
that no one would ever choose tobe in. Also was was sexually
abused as a young kid. And also,typically, I think, because it's
getting different in a good way,that men and women, men,
especially men, are going to gethelp around earlier, instead of
in your 40s, 50s, 60s, it's2030s, 40s. Now the folks in my
(12:39):
therapy group, half of them arein their 30s, and the social
worker leads it describes thatas a shift over the course of
his career, and one that hecelebrates So similarly, I
didn't the information wasthere, but I didn't integrate
it. Sometimes I describe it asthe course of my training,
between trained as an oncologistand and then as a as a hospital
(12:59):
chaplain, and then pediatricpalliative care, and finally, in
learning to be a psychedelicguide, that the lighting slowly
shifted, and then suddenly, in amore dramatic way, shifted to
help me understand what hadhappened and what it had to do
with who I was and and how Ibehaved in the world.
Relationally, bothprofessionally and personally,
writing has been part of that,that writing has been a it's an
(13:21):
occasion to represent andarticulate not just what
happened, but really what itwhat it means, and put it in
relationship to the present.
Again, both, I guess, bothpersonally and professionally
and to be you know, for me, II'm still working on this never
ending book by envy you that youyou finish yours, because I'm
still, still struggling tocomplete the last chapter in
(13:42):
which I really understandeverything and have it all
figured out. And it may a, um,mature, well adjusted, emotional
being, both professionally andpersonally, there's been a an
evolving project of trying toarticulate an honest, satisfying
answer to it, and then, youknow, in doing so put myself in
relation to the parents in a waythat I think, you know, echoes
(14:02):
what Bob said, and reallyunderstand, oh, wait, I'm this
is the relationship of my ownsuffering to this, this family
suffering, or this parentssuffering, and to really, like,
acknowledge with real humility,there is nothing else like what
our families and patients aregoing through. Everybody has
their own worst thing. You know,I
Sarah Dabagh (14:20):
hear a lot of questions asked to applicants,
asked to myself, ask thecolleagues, what brought you to
this field and what made you gointo pediatric palliative care.
And oftentimes, the person who'sasking asks with an incredulous
air. One thing I love that yousaid, Bob, is this I wrote down
the sentence this goal to makethe world hurt a little less. I
think it's a goal everybody cansign up for, and there are many
(14:44):
ways to do it. Not all peoplehave to sit at the bedside of a
dying and sick child in order tohelp make the world hurt a
little less. But that's a placethat both of you found
yourselves, and the journeythere, for both of you touched
on. You know, spirituality and.
And chaplaincy training, ittouched on narrative and telling
other people's stories. Interestin people's stories pulls a lot
(15:06):
of people to palliative care.
And this may seem like a strangequestion, but 15 years ago, what
would you have said brought youto palliative care, and how
would that answer change today?
Bob Macauley (15:18):
Yeah, that's a great question for me. 15 years
ago, I would have talked aboutsort of a confluence of
experience and skills. Inaddition to being a
pediatrician, I'm also anEpiscopal priest, and so I would
say something like, it's a wayto bring together the things I
was trained to do, and alsorecognizing that sometimes our
(15:40):
greatest strength is also ourgreatest weakness. And so one of
the after effects of what Iexperienced as a child is like I
am an elite dissociator. Formost of my life, I had to, or at
least my younger years, I hadto. So that is a skill, a
survival skill that onceacquired, it doesn't take a
(16:03):
whole lot to slip back into it.
And so it wasn't like I wasn'temotionally connected with my
patients, but in the moment, Ican dissociate to beat the band.
And what that means is I can getthrough intense situations, tuck
things into a corner, and thendeal with the feelings that I
tucked into that corner whenthings have settled down. And I
(16:24):
think that's a valuable skill insome ways to have to some
degree, but taken to an extreme,it's not healthy. And so 15
years ago, I would have saidit's a confluence of my training
and my skill set acquired in allkinds of different ways. And now
I would say that I started in aplace where people did things
(16:46):
that no one ever should do, andI found myself to my great
blessing in a place where peopledo things I never thought human
beings could do in the bestpossible sense. And that's where
the healing comes for me. Yeah.
I
Unknown (17:04):
think 15 years ago I would have, I would have said,
palliative care. You're crazy.
I'm never going to be apalliative care doctor. But back
then, I had some awareness of anebulous sense of, oh, I want
to, I want to learn to helppeople. I want to learn to take
care of them in ways that gobeyond the at that time you're
writing the chemotherapy andmanaging the intense
complications of cancertreatment for kids. I think this
(17:24):
speaks back to what Bob was justsaying about dissociation, being
drawn to intense psychoemotional situations or work
where I really I could just becompletely what looked like
totally calm and compassionate,but also distant, reasoned and
like, looking disinterested andclinical, but also connected in
a way that appeared one way. Butactually what was at the heart
(17:46):
of it was just a talent fordissociation that went beyond
any other academic or creativetalent. It was like, the one
thing I was absolutely best at,but the one thing I didn't
acknowledge that I was doing,even though, like, I got the
bradycardia award as an internfor being most unflappable in
terrible situations. But thatwas because I was literally not
(18:06):
all there. I actually wasclinically, you know, I think
doing a good job in those spacesand being helpful, but not in
the way I think I can now. And Iguess it comes back to what Bob
said, but there was, you know,there's something about being
really fully invested, finally,in the idea that as awful as
things get, there's another sideto it. You
Daniel Eison (18:26):
know, this article that Chris wrote that we
interviewed you about low somany years ago on this podcast
where the question was, less,why do you do this work, and
more, how do you do this work?
And I think I'm hearing you bothsay that the trauma of your
past, the things that you'vegone through, influence both of
those answers. It's both the howand the why. And I think that's
(18:50):
an important nuance,
Bob Macauley (18:53):
yeah, and I think that's incredibly insightful.
Totally agree. I think that thehow piece for me is on some
level, to come to peace with thefact that a little dissociation
once in a while is not the worstthing in the entire world. You
know, like it gets you throughdifficult times taken to an
extreme. It can be reallyunhealthy. But there's probably,
there's a wonderful thing aboutnot being tachycardic during a
(19:17):
code like Chris won his award,and embedded provided some
excellent care to kids whoneeded it right then and there.
I think the why piece iscertainly my background and my
history contributes to that, andthat's the one that I really
think most about, which is tosay that when I tell people I do
pediatric palliative care, like,first of all, I don't tell many
people that. I just tell themI'm pediatrician because it's
(19:39):
just nicer for them and I don'twant to ruin their day, but if
they really want to know more,then I'll tell them. And they,
often times, go down the roadof, Oh, you're so selfless, and
you're, you know, it's amazingwhat you sacrifice, and you
know, it's lovely that, youknow, it's a nice thing for
someone to say to somebody else,but I'm like, that's not true,
right? Like, and I don't thinkit should be true. I don't.
(20:00):
Think anyone listening to thispodcast who is involved in
pediatric palliative care,somehow, I would hope that we
don't wake up every morning andbe like, This is the worst thing
ever, and I'm just going to getthrough the day, but it's the
right thing to do, because ifthat's the case, you probably
don't have a very happy life,and arguably, you're probably
not providing awesome care. Butthe other extreme is also really
(20:22):
interesting for me. I never wantto get to a place, and I hope I
never have where I do this workonly for me, like, if I'm like,
I have wounds from my past,where can I go and find my own
healing? Well, then I should getin therapy, and I should have
some friends, right? I shouldn'tgo out there with parents, with
really sick kids and have themmeet my needs. And so I think
(20:44):
that some there's got to be theright middle ground in there.
And I don't know what the rightanswer is, but I think that
there's danger on both extremes.
Unknown (20:52):
Yeah, I think that the how became the why for me, and
once I recognized that, it freedme up to do the work in a way
that gestures more towards whatBob's talking about. In
fellowship, I had a, you know,one of my mentor and fellowship,
not very far into thefellowship, asked, What dark
need is being met in you by, bybeing in this work. And he
asked, in health, sort of halffacetiously, or in the context
(21:14):
of, you know, if you're, youknow, just looking around in a
at HBM and, and if there, youknow, anybody who seems a little
kooky, asking, asking thequestion, what like the people
who are who like, seem a littletoo interested in in death and
dying. Answering that questioncan be part of a way to be
grounded in the in the everyday,or every time you go into a
patient room to ask, when I'mlike, What am I here for? What's
(21:35):
going on, and how can I reallybe supportive?
Sarah Dabagh (21:38):
And so in some ways, you've answered this
question, but I'm going to askit again. In what ways have you
felt your practice shift orchange with this realization,
this full circle, as you'vedescribed it, realization, in
some
Unknown (21:52):
ways it didn't change anything the technical parts of
the work, even the kind oftechnical parts of the psycho
emotional work. I don't knowthat I necessarily looked any
different to my team or to thefolks we were consulting for,
but it shifted how I understoodwhat I was doing, and it changed
me as a preceptor, for sure,because suddenly I started
(22:14):
asking in the most gentle waypossible, different questions
about the residents who came torotate with us, or our fellows,
or visiting fellows, that Iwould ask them some version of
the question, tell me more aboutwhy you're here, or, you know,
the residents. What are youhoping to learn while you're
with us? And I would start tooffer the question, you know, is
it sort of choose your ownadventure thing. What comes up
(22:35):
for you when you are in thesespaces with us? And would you be
willing to think in between nowand when we see you again, about
your own experience of grief,say, or think about your own
experience of loss, and maybewriting that down something,
writing something down about it,maybe not just coming, come back
into our shared clinical spaceor educational space, and we'll
(22:58):
talk about it. I
Bob Macauley (22:59):
think, I think, Oh, actually, I know I think
less, and dare to trust my heartand my sense of what the world
is, which is what I was trainednot to do as a child. And that
took a lot of reformatting, ifyou will. The sentence that I
(23:21):
most miss about the book was onethat I fought really hard for,
and my publisher would not backdown. I had a little aside, and
I said, not to go all Buddhiston you or anything like that,
but it would seem to me that theheight of presence is not
thinking about being present. Istill like that line, but he
thought it was anti Buddhist. Idon't think it was, but so now
(23:42):
I'm going to slip it into apodcast so I still get to say it
that was for me. As I look back,I thought to myself, I think
there's a little growth there,from where I started out to
where I ended up that thing. So
Daniel Eison (23:56):
as your comment is highlighting, both writing and
podcasting are methods of publiccommunication. You also both
mentioned how your experiencesand your processing of those
experiences have had an impacton your interactions with your
colleagues, with your teams, andthis is something that you have
(24:17):
both written about, and it'ssomething you're both now
podcasting about and I'mwondering if you can just
reflect on that experience oftalking about this in a public
forum. Yeah,
Unknown (24:28):
I guess you know my I guess I can say I outed myself
as a childhood sexual abusesurvivor in a short perspective
piece in a medical journal. Andit's funny, I the piece I wrote,
It was intended as a bookend forthe one that we talked about
here a couple years ago, whichwas about being at a cocktail
party and being asked, How doyou do this work? And it was
(24:48):
sort of that that original piecewas the answer was, I can do
this work because it's aprivilege to actually get to be
next to it. It's an I'm gratefulthat I'm. Um, that the work puts
me close to it, instead of beingat a distance or hiding from it.
So lucky me. Lucky us, anybodywho's put in the way of other
people's suffering. And thesecond piece was why I do this
(25:12):
work. How I do this work goesback to what happened to me and
everything we've been talkingabout, about why having to share
a shared sense of reconcilingsuffering can be an engine for a
vocation. I think some part ofme, even back then, this was a
couple years ago, hoped thatjust saying the words I was I
was sexually abused by myparents when I was kid. I hoped
(25:32):
that that would just be anoccasion for clinicians, I
guess, to have an example ofsomebody opening up a route the
relationship between their owntheir own trauma and their
vocation as clinicians. I wishthat podcasts like this, or even
a tendency in the world ofpopular medical non fiction, a
(25:53):
place where people get to showup more as themselves and not
just talk about suffering at aremove, that'll open up a
different space of conversation.
Bob Macauley (26:02):
Yeah, I resonate very much with what Chris said.
And for me, this was never thepurpose of writing the book that
I wrote, but one of the resultsof writing the book was tying
things together into more of acoherent narrative of my own
life, so that I understand thatbetter. I also think that there
(26:25):
is, as we are talking, less thantwo weeks away from publication
date of the book is equallyexciting and petrifying, maybe
more petrifying right now thanexciting, but they're kind of
competing with each other rightnow, because before I started
writing the book, I could countthe number of people who knew
(26:46):
that about me on one hand. Andnow I really hope more than five
people buy the book. That'd benice if I need at least two
hands. And I come backoftentimes to a quote that I
think about a lot by JaniceJoplin, who said Freedoms just
another word for nothing left tolose. For me, right now, I look
at it as freedoms, just anotherword for nothing left to hide.
(27:09):
So it's out there, and anyonewho wants to read the book will
know that, and that is a veryfreeing thing, because it takes
work to keep secrets, and it'snice not to have to do that
work. I hope people who read thebook will like if they don't
know about pediatric palliativecare, they'll know about
(27:29):
pediatric palliative care wellwhat it is that we do on a daily
basis, which I think is soimportant. And then I also hope
that when they see somebody whoseems like they have it all
together just walking down thestreet or bumping into somebody,
they might pause and say, Iwonder what that person is
carrying, and maybe that willlead to greater understanding
(27:49):
and compassion.
Daniel Eison (27:52):
This feels like a moment for me to say to our
audience, please, please readthis book. It absolutely does
explain what pediatricpalliative care is all about, in
a way that I think people in thefield and people not in the
field alike can appreciate andunderstand things more deeply.
It helped me understand thingsmore deeply about the work that
(28:13):
we do. And I want to, just like,hand it out on the street
corners to everyone to be like,This is what I do. I'm so proud
of what I do. Look read thisbook. It does such a good job.
And I don't know if this is thepart in the recording where I'm
supposed to give the book aplug, but like, definitely do
read this book. It's really anawesome book.
Bob Macauley (28:29):
I really appreciate that, Dan and not
that it would, if it does make adifference, I would note all
proceeds from the book are goingto charity, primarily to support
our program here in Oregon, butalso a portion. And this is
especially relevant, especiallyrelevant with the conversation
with Chris abortion going todarkness to light, which is a
fabulous organization that isworking to prevent child sexual
(28:51):
abuse.
Sarah Dabagh (28:56):
I think the thing about this episode that was
strange for us is we are so usedto talking about human
suffering, but a very specifickind of multifaceted but
situational human suffering,that encountering a new and
different kind of humansuffering, I was just hesitant
as to how to do it right. That
Daniel Eison (29:16):
comparison struck me, as well as you and I were
thoughtfully, delicately askingquestions. I thought to myself,
This is what we doprofessionally. We ask people
about the worst things in theirlives, and yet it still felt
challenging. I wonder if it'sbecause, like you said, it's a
very different type ofsuffering. And also, I think
(29:40):
there might be somethingdifferent in that we were
talking to colleagues, andthat's not often what we do.
Sarah Dabagh (29:46):
And I think this piece I want to make sure is
evident too, is that this wasthe journey, the self discovery,
journey of two specific peoplehappen to have a tremendous
number of parallels, but is notmeant. To be reflective of
whether or not anyone is anexcellent pediatric palliative
care provider in the absence oftheir own personal trauma.
Daniel Eison (30:06):
Yeah, I think that's really important if we're
talking about takeaways fromthis episode. After we recorded
it, I had a conversation withsomeone who is thinking about
going into pediatric palliativecare, and I was very conscious
of, first of all, not asking thequestion of, well, why? Why'd
you choose this field like,what? What's your dark secret?
And then without my asking, asthis person shared their very
(30:31):
personal experience with griefand loss and illness, I was able
to say, hey, you know you're notalone in having personal
historical reasons for wantingto come into this field. That's
not a bad thing, because it canfeel weird to say, well, I'm
going into this because ofsomething that happened to me.
But actually, it turns out a lotof people do. And
Sarah Dabagh (30:53):
the take home to my take home, I think the piece
I'm really carrying one feelingor idea or fragment of a thought
from this conversation. I thinkthe thing that they said pretty
explicitly at the beginning, butthen I held on to it as we had
the rest of the conversation,was the how do you keep doing
this work? There's thisfulfilling idea to the fact that
you are watching the best ofhumanity, and you are watching a
(31:18):
reminder that there is goodnessin the world, in the way that
people flock to the bedside of adying child, that that is a
reminder of like, the goodnessin the world that I think
sometimes we need. And it'sactually very fulfilling, not
Daniel Eison (31:31):
to be trite about it. But isn't there that quote
from Mr. Rogers about whensomething bad happens, look for
the helpers. And in our line ofwork, we get to see the helpers
all the time.
Sarah Dabagh (31:41):
See the helpers. I think it's also important to say
that we are not the onlyhelpers. Yeah,
Daniel Eison (31:45):
for sure, yeah.
Thanks for listening. Our themesong was written by Kevin
McCloud. You can follow us onblue sky, where our username is
pdal, dot bsky, dot social. Youcan find the notes for this
episode and all the others onour website. Pedipal.org, if
you'd like to submit thoughts,objections or ideas for future
episodes, please reach outthrough the email on our site.
(32:06):
This has been PD, pal, see younext
Sarah Dabagh (32:11):
month. The other thing, I think it's funny, just
I edited this out of thehighlighting, but Chris says in
as we were recording, and Irecognized that when it happened
an exact sentence that he saidin our last episode, really,
yeah. It was the like, oh, pal,I don't care what's that a bunch
of people in like, Jesuit robes,like, oh yeah. It was an exact
to the word sentence. And Isaid, we can't include that
(32:32):
because, like, our listener, ifthey exist, will know that Chris
has a limited number of lines.
Sorry,
Daniel Eison (32:38):
we can't expose him like that. He's willing to
talk about his horriblechildhood trauma. Childhood
Trauma, but if show that he has,Like, a few one liners and He
repeats You
Dan. Hi. This is Sarah, and this is Dan, and we'd
(00:04):
like to welcome you to pedia,
Daniel Eison (00:06):
a monthly podcast about all things pediatric
palliative care as always,
Sarah Dabagh (00:11):
the views on this episode are ours alone and do
not represent our respectiveorganizations, and they do not
constitute medical advice. Thestory
Daniel Eison (00:17):
of how this episode came to be is a little
bit different than a lot of ourother episodes. We got an email
from former guest of thepodcast, Dr Bob McCauley, and he
told us that, very excitingly,he has a book coming out. The
book,
Sarah Dabagh (00:32):
which I believe is coming out on June 4, is called
because I knew you how someremarkable Sick Kids healed a
doctor's soul. And Dr McCauleywas kind enough to send us some
advanced copies, and as we werereading through them, certain
themes emerged, certain thoughtsemerged, and the idea of this
episode took a little bit of ashift, and so we're going to let
our guests speak for themselves,but we've invited on two friends
(00:55):
of the podcast, Dr Macaulay andDr Adrian, who have quite A few
things in common, including bothbeing now published authors who
have written about their ownwork doing pediatric palliative
care, and we're going to havethem sort of come on and
introduce themselves. But beforewe do, it was important for us
to say to our listeners thatthere is a trigger warning for
this episode in which we will beaddressing themes regarding the
(01:18):
childhood sexual abuse. You
Bob Macauley (01:24):
My name is Bob McCauley, and I'm a pediatric
palliative care doc at OregonHealth and Science University in
Portland, Oregon.
Chris Adrian (01:31):
And I'm Chris Adrian. I'm a pediatric
palliative care doctor atChildren's Hospital Los Angeles.
Sarah Dabagh (01:36):
Thank you both again for coming. I would love
to start Bob, one of the reasonswe're here today is because you
have a book coming out. I'd lovefor you to tell our audience a
little bit about what the bookis, when it's coming out, and
how it came to you to write it.
Well, it's
Bob Macauley (01:51):
great to be here.
Thank you for the invitation.
Sarah and Dan and to my friendChris, it's nice to be here with
you. So the book is calledbecause I knew you how some
remarkable Sick Kids healed adoctor's soul. And the genesis
of that was about now five yearsago or so, and I had been
reading a bunch of books in theadult palliative care world,
(02:12):
really beautiful books aboutadult palliative care docs and
the patients that they had takencare of. Specifically, I think
of that good night by SunitaPuri, which is a beautiful book,
and I kept thinking to myself asI read these books over a period
of time that pediatricpalliative care is different. It
has a lot of similarities, butit is really unique, as we all
know on this call. And so Ithought about some patients that
(02:35):
meant a lot to me, impacted mylife, and illustrated maybe some
themes that were missing inbooks about adults. And the next
day, I thought a few morepatients, and a couple of days
later, I had enough that Istarted making notes. And then I
thought to myself, this mighthave some legs. So I reached out
to the parents of those patientsthat I was still in touch with,
(02:58):
most of the kids who werementioned in the book. And I
asked them, I said, I'm thinkingabout writing about your child
and my experience, would that beokay with you? And with one
exception, they said yes. Andthen we had some very profound
zoom calls, mostly duringpandemic, and a lot of the time
that they were far away, and weremembered about their child
(03:21):
together, and then I wrote thevarious chapters and circled
back and made sure that I goteverything as right as I could.
Then it became a labor of loveto find a way to get it
published. So a little kernelthat I overlooked which anyone
who wants to do this should notoverlook it. It's always better
to get a publisher before youwrite the book than to write a
book about a potentiallypowerful and not overly
(03:44):
attractive in the marketplacesubject, and then try to find a
publisher. So I did itbackwards. It happened to work
out. I do not recommend it to myfamily and friends.
Daniel Eison (03:53):
I almost want to just hear Chris's voice now on
this as someone else withexpertise in this area, you've
also been in in this world ofwriting about, how is it you put
it Bob, a powerful andpotentially not market ready
subject. So Chris, what's yourtake on that?
Unknown (04:09):
My solution to the problem of getting someone
interested in a book that'sgoing to brighten, terrify or
despair at the market is to baitand switch, to propose one book
and then turn in another book,which is the book I'm working on
now, was was supposed to be afairly anodyne collection of
perspective pieces about medicaleducation, and has turned
instead into a memoir of medicaleducation that is mostly about
(04:33):
grief, suffering and a visceralrendering of a subject that I
kept at arm's length in fictionpreviously, but now I've turned
to in a kind of quasi memoir.
They're kind of always writtenabout, about kids in trouble in
in one way or another, whenfaced with the challenge of of
joining the kind of endeavorthat Bob was describing around
how you know that those booksare comparatively all over the
(04:54):
place in the adult palliativeworld, but they've been fewer of
them in. I think, in the pedsworld, books that try and bring
an understanding of pediatricpalliative care and what it's
like to be a clinician, to beone, or why we are clinicians.
I'm interested
Sarah Dabagh (05:11):
in this description of, sort of, this
unintentional memoir, and thistransition into a memoir as you
write about kids in trouble andBob, I wonder if you can touch
on this too. You started yourdescription of writing this book
is talking about the stories ofother people and other children,
but it's impossible not to leaveyour own story in in some way,
(05:32):
as you piece those storiestogether into a novel. And I'm
wondering if you can touch onwhat telling your own story as
part of this was like, yeah, it
Bob Macauley (05:41):
was an interesting road in the sense that the early
versions are significantlydifferent than the final
version, and the reason for thatis I shared the manuscript. Took
me about two years or so to putit together, and then I shared
it with a few people whoseopinions I really trust, and
every single one said the samething. They said that this book
(06:05):
needs more of your as in myvoice in it, because we in the
practice of pediatric palliativecare, to state the obvious, we
engage in such profoundrelationships and situations
that I think we can't help butbe changed. And so if we take a
more kind of removed, analyticalview, we don't really do justice
(06:28):
to the power of the stories. Andso with that invitation, I
started diving a little bitdeeper, and it was really only
in the course of writing thebook, although it was not the
purpose of writing the book, buta sort of side effect, if you
will, that I began to tietogether some big loose ends in
my own life that what people ifthey choose to read the book
(06:52):
that's come through so muchediting over so much time that
hopefully those strands havebeen tied together in the text,
but it took me a long time totie them together in my own
mind, to put them to paper, tounderstand what it was about the
work that we do that drew me toit, and to understand how much
(07:16):
the kids and families that Ihave treated and come to know
and truly been inspired by havechanged my life. And so it was
really about the 30th revisionat the end, when I finally put
it all together. That ifsomebody were to say, like, can
you condense this book into asentence or two, I'd say it's a
(07:38):
thank you note, like it's athank you note to these kids and
their families for showing mewhat the goodness and the
courage that human beings arecapable of that resonates
Unknown (07:52):
for me, in particular, that gratitude for being in a
place where somebody else showsyou the best in the world,
having experienced the worst ofit, and something that You know,
that I struggle with, even justas a clinician, and it's
probably true of any for anyclinician, but maybe
particularly for us, thatpresence is so much a part of
our clinical method that if youcan't really be present in the
room with somebody, you're goingto miss something, or you'll be
(08:14):
impaired in your process or inyour method. And there is
something about about not beingable to be fully present with my
own history as child, or as achild who encountered the worst
of the world or the worst ofwhat people have to offer each
other, that made it hard for meto be present for the kids and
families I was working with. Ina funny way, there was a
(08:36):
strength I think I borrowed toface my own stuff that in turn
let me come back into the roomto be present for them and help
them. And it was this, you know,this very surprising and
astonishing, somewhat painful atfirst circle, but once it got
going, it felt like a way intothe work that was finally
sustainable. Like no one's gonnaremember what a self winding
watch was, but there used to bewatches that they wound just
(08:57):
when you raised your your handup to look at the watch style
that felt like that.
Daniel Eison (09:03):
What both of you have started to talk about, but
we've spoken about, justimplicitly so far, is you've
both made mention of personallyexperiencing some of the worst
of what the world has to offer,and how that has influenced the
work that you do, the writingthat you do, and I'm, I'm
(09:23):
wondering if you can talk moreabout the way that watch wines
itself. I appreciate
Bob Macauley (09:27):
that. Dan, so for me, and I'm sort of used to kind
of more of a lead up to this, Idon't really start here, and so
I appreciate the chance to sortof have some conversation
beforehand. But so I wassexually abused as a child, and
I think that it's taken me along time to understand how that
(09:50):
has impacted my life. Lookingback, the pieces fit together
actually really well. I justcouldn't put them together very
quickly, because I think thatwhen. Someone experiences
trauma, it throws a whole lot ofvariables into the mix, and
oftentimes impacts your abilityto see and understand and I
think that the early drafts ofthe book, especially, I didn't
(10:13):
go into that quite as much, ornot nearly as much, for a couple
of reasons. One is, I think Iwas trying to protect the reader
just a smidge like, this is astory in the book of 18 or 20
kids I've taken care of. Most ofthem did not survive. And so I
could imagine somebody readingthat being like, well, I can't
get any sadder than that, and mebeing like, well, actually,
(10:33):
don't. Don't sell me short. Ican. I can make it sadder than
that. That just seemed likepiling on. The other piece too,
that I really struggled with,and continue to struggle with,
is so I had something happenedto me that was really bad. I
don't want to equate that with aparent losing a child. So are
(10:54):
they both sad? Yes, this is nota competition, and if it were, I
would lose hands down seven daysa week. I don't ever want to be
put in the same category asparents who have gone through
what the read parents have gonethrough. I sometimes say that I
experienced a grief adjacentworld compared to what they
experience. Do I have a sense ofwhat they go through? I think
(11:17):
maybe, but nothing close to whatthey have experienced in losing
a child, and it was really inthe conversations that I had
with the parents that I spokewith in writing the book, that I
think implicitly, because thisdidn't really, I didn't share my
own story with them, but we weretalking about their stories
implicitly, I think they gave mepermission to share my own
(11:38):
story, because I Don't thinkparents want to have a corner on
that market. It's not likethey're out there telling
everybody when someone else hasa hard day, well, you don't know
what a hard day is. I know whata hard like. I've never
experienced a brief parent dothat when they encounter
somebody who's having a bad dayin that person's own world,
whether that's like running latefor work or something not that
(12:01):
big a deal. They have compassionfor that person, like their goal
is not to win the contest of whohurts the most. Their goal is to
try to make the world hurt alittle less. When I saw that,
then I said, I think I can speakfrom the heart more than I did
early on.
Unknown (12:17):
I guess I can say Bob and I are not in the same club
that no one would ever choose tobe in. Also was was sexually
abused as a young kid. And also,typically, I think, because it's
getting different in a good way,that men and women, men,
especially men, are going to gethelp around earlier, instead of
in your 40s, 50s, 60s, it's2030s, 40s. Now the folks in my
(12:39):
therapy group, half of them arein their 30s, and the social
worker leads it describes thatas a shift over the course of
his career, and one that hecelebrates So similarly, I
didn't the information wasthere, but I didn't integrate
it. Sometimes I describe it asthe course of my training,
between trained as an oncologistand and then as a as a hospital
(12:59):
chaplain, and then pediatricpalliative care, and finally, in
learning to be a psychedelicguide, that the lighting slowly
shifted, and then suddenly, in amore dramatic way, shifted to
help me understand what hadhappened and what it had to do
with who I was and and how Ibehaved in the world.
Relationally, bothprofessionally and personally,
writing has been part of that,that writing has been a it's an
(13:21):
occasion to represent andarticulate not just what
happened, but really what itwhat it means, and put it in
relationship to the present.
Again, both, I guess, bothpersonally and professionally
and to be you know, for me, II'm still working on this never
ending book by envy you that youyou finish yours, because I'm
still, still struggling tocomplete the last chapter in
(13:42):
which I really understandeverything and have it all
figured out. And it may a, um,mature, well adjusted, emotional
being, both professionally andpersonally, there's been a an
evolving project of trying toarticulate an honest, satisfying
answer to it, and then, youknow, in doing so put myself in
relation to the parents in a waythat I think, you know, echoes
(14:02):
what Bob said, and reallyunderstand, oh, wait, I'm this
is the relationship of my ownsuffering to this, this family
suffering, or this parentssuffering, and to really, like,
acknowledge with real humility,there is nothing else like what
our families and patients aregoing through. Everybody has
their own worst thing. You know,I
Sarah Dabagh (14:20):
hear a lot of questions asked to applicants,
asked to myself, ask thecolleagues, what brought you to
this field and what made you gointo pediatric palliative care.
And oftentimes, the person who'sasking asks with an incredulous
air. One thing I love that yousaid, Bob, is this I wrote down
the sentence this goal to makethe world hurt a little less. I
think it's a goal everybody cansign up for, and there are many
(14:44):
ways to do it. Not all peoplehave to sit at the bedside of a
dying and sick child in order tohelp make the world hurt a
little less. But that's a placethat both of you found
yourselves, and the journeythere, for both of you touched
on. You know, spirituality and.
And chaplaincy training, ittouched on narrative and telling
other people's stories. Interestin people's stories pulls a lot
(15:06):
of people to palliative care.
And this may seem like a strangequestion, but 15 years ago, what
would you have said brought youto palliative care, and how
would that answer change today?
Bob Macauley (15:18):
Yeah, that's a great question for me. 15 years
ago, I would have talked aboutsort of a confluence of
experience and skills. Inaddition to being a
pediatrician, I'm also anEpiscopal priest, and so I would
say something like, it's a wayto bring together the things I
was trained to do, and alsorecognizing that sometimes our
(15:40):
greatest strength is also ourgreatest weakness. And so one of
the after effects of what Iexperienced as a child is like I
am an elite dissociator. Formost of my life, I had to, or at
least my younger years, I hadto. So that is a skill, a
survival skill that onceacquired, it doesn't take a
(16:03):
whole lot to slip back into it.
And so it wasn't like I wasn'temotionally connected with my
patients, but in the moment, Ican dissociate to beat the band.
And what that means is I can getthrough intense situations, tuck
things into a corner, and thendeal with the feelings that I
tucked into that corner whenthings have settled down. And I
(16:24):
think that's a valuable skill insome ways to have to some
degree, but taken to an extreme,it's not healthy. And so 15
years ago, I would have saidit's a confluence of my training
and my skill set acquired in allkinds of different ways. And now
I would say that I started in aplace where people did things
(16:46):
that no one ever should do, andI found myself to my great
blessing in a place where peopledo things I never thought human
beings could do in the bestpossible sense. And that's where
the healing comes for me. Yeah.
I
Unknown (17:04):
think 15 years ago I would have, I would have said,
palliative care. You're crazy.
I'm never going to be apalliative care doctor. But back
then, I had some awareness of anebulous sense of, oh, I want
to, I want to learn to helppeople. I want to learn to take
care of them in ways that gobeyond the at that time you're
writing the chemotherapy andmanaging the intense
complications of cancertreatment for kids. I think this
(17:24):
speaks back to what Bob was justsaying about dissociation, being
drawn to intense psychoemotional situations or work
where I really I could just becompletely what looked like
totally calm and compassionate,but also distant, reasoned and
like, looking disinterested andclinical, but also connected in
a way that appeared one way. Butactually what was at the heart
(17:46):
of it was just a talent fordissociation that went beyond
any other academic or creativetalent. It was like, the one
thing I was absolutely best at,but the one thing I didn't
acknowledge that I was doing,even though, like, I got the
bradycardia award as an internfor being most unflappable in
terrible situations. But thatwas because I was literally not
(18:06):
all there. I actually wasclinically, you know, I think
doing a good job in those spacesand being helpful, but not in
the way I think I can now. And Iguess it comes back to what Bob
said, but there was, you know,there's something about being
really fully invested, finally,in the idea that as awful as
things get, there's another sideto it. You
Daniel Eison (18:26):
know, this article that Chris wrote that we
interviewed you about low somany years ago on this podcast
where the question was, less,why do you do this work, and
more, how do you do this work?
And I think I'm hearing you bothsay that the trauma of your
past, the things that you'vegone through, influence both of
those answers. It's both the howand the why. And I think that's
(18:50):
an important nuance,
Bob Macauley (18:53):
yeah, and I think that's incredibly insightful.
Totally agree. I think that thehow piece for me is on some
level, to come to peace with thefact that a little dissociation
once in a while is not the worstthing in the entire world. You
know, like it gets you throughdifficult times taken to an
extreme. It can be reallyunhealthy. But there's probably,
there's a wonderful thing aboutnot being tachycardic during a
(19:17):
code like Chris won his award,and embedded provided some
excellent care to kids whoneeded it right then and there.
I think the why piece iscertainly my background and my
history contributes to that, andthat's the one that I really
think most about, which is tosay that when I tell people I do
pediatric palliative care, like,first of all, I don't tell many
people that. I just tell themI'm pediatrician because it's
(19:39):
just nicer for them and I don'twant to ruin their day, but if
they really want to know more,then I'll tell them. And they,
often times, go down the roadof, Oh, you're so selfless, and
you're, you know, it's amazingwhat you sacrifice, and you
know, it's lovely that, youknow, it's a nice thing for
someone to say to somebody else,but I'm like, that's not true,
right? Like, and I don't thinkit should be true. I don't.
(20:00):
Think anyone listening to thispodcast who is involved in
pediatric palliative care,somehow, I would hope that we
don't wake up every morning andbe like, This is the worst thing
ever, and I'm just going to getthrough the day, but it's the
right thing to do, because ifthat's the case, you probably
don't have a very happy life,and arguably, you're probably
not providing awesome care. Butthe other extreme is also really
(20:22):
interesting for me. I never wantto get to a place, and I hope I
never have where I do this workonly for me, like, if I'm like,
I have wounds from my past,where can I go and find my own
healing? Well, then I should getin therapy, and I should have
some friends, right? I shouldn'tgo out there with parents, with
really sick kids and have themmeet my needs. And so I think
(20:44):
that some there's got to be theright middle ground in there.
And I don't know what the rightanswer is, but I think that
there's danger on both extremes.
Unknown (20:52):
Yeah, I think that the how became the why for me, and
once I recognized that, it freedme up to do the work in a way
that gestures more towards whatBob's talking about. In
fellowship, I had a, you know,one of my mentor and fellowship,
not very far into thefellowship, asked, What dark
need is being met in you by, bybeing in this work. And he
asked, in health, sort of halffacetiously, or in the context
(21:14):
of, you know, if you're, youknow, just looking around in a
at HBM and, and if there, youknow, anybody who seems a little
kooky, asking, asking thequestion, what like the people
who are who like, seem a littletoo interested in in death and
dying. Answering that questioncan be part of a way to be
grounded in the in the everyday,or every time you go into a
patient room to ask, when I'mlike, What am I here for? What's
(21:35):
going on, and how can I reallybe supportive?
Sarah Dabagh (21:38):
And so in some ways, you've answered this
question, but I'm going to askit again. In what ways have you
felt your practice shift orchange with this realization,
this full circle, as you'vedescribed it, realization, in
some
Unknown (21:52):
ways it didn't change anything the technical parts of
the work, even the kind oftechnical parts of the psycho
emotional work. I don't knowthat I necessarily looked any
different to my team or to thefolks we were consulting for,
but it shifted how I understoodwhat I was doing, and it changed
me as a preceptor, for sure,because suddenly I started
(22:14):
asking in the most gentle waypossible, different questions
about the residents who came torotate with us, or our fellows,
or visiting fellows, that Iwould ask them some version of
the question, tell me more aboutwhy you're here, or, you know,
the residents. What are youhoping to learn while you're
with us? And I would start tooffer the question, you know, is
it sort of choose your ownadventure thing. What comes up
(22:35):
for you when you are in thesespaces with us? And would you be
willing to think in between nowand when we see you again, about
your own experience of grief,say, or think about your own
experience of loss, and maybewriting that down something,
writing something down about it,maybe not just coming, come back
into our shared clinical spaceor educational space, and we'll
(22:58):
talk about it. I
Bob Macauley (22:59):
think, I think, Oh, actually, I know I think
less, and dare to trust my heartand my sense of what the world
is, which is what I was trainednot to do as a child. And that
took a lot of reformatting, ifyou will. The sentence that I
(23:21):
most miss about the book was onethat I fought really hard for,
and my publisher would not backdown. I had a little aside, and
I said, not to go all Buddhiston you or anything like that,
but it would seem to me that theheight of presence is not
thinking about being present. Istill like that line, but he
thought it was anti Buddhist. Idon't think it was, but so now
(23:42):
I'm going to slip it into apodcast so I still get to say it
that was for me. As I look back,I thought to myself, I think
there's a little growth there,from where I started out to
where I ended up that thing. So
Daniel Eison (23:56):
as your comment is highlighting, both writing and
podcasting are methods of publiccommunication. You also both
mentioned how your experiencesand your processing of those
experiences have had an impacton your interactions with your
colleagues, with your teams, andthis is something that you have
(24:17):
both written about, and it'ssomething you're both now
podcasting about and I'mwondering if you can just
reflect on that experience oftalking about this in a public
forum. Yeah,
Unknown (24:28):
I guess you know my I guess I can say I outed myself
as a childhood sexual abusesurvivor in a short perspective
piece in a medical journal. Andit's funny, I the piece I wrote,
It was intended as a bookend forthe one that we talked about
here a couple years ago, whichwas about being at a cocktail
party and being asked, How doyou do this work? And it was
(24:48):
sort of that that original piecewas the answer was, I can do
this work because it's aprivilege to actually get to be
next to it. It's an I'm gratefulthat I'm. Um, that the work puts
me close to it, instead of beingat a distance or hiding from it.
So lucky me. Lucky us, anybodywho's put in the way of other
people's suffering. And thesecond piece was why I do this
(25:12):
work. How I do this work goesback to what happened to me and
everything we've been talkingabout, about why having to share
a shared sense of reconcilingsuffering can be an engine for a
vocation. I think some part ofme, even back then, this was a
couple years ago, hoped thatjust saying the words I was I
was sexually abused by myparents when I was kid. I hoped
(25:32):
that that would just be anoccasion for clinicians, I
guess, to have an example ofsomebody opening up a route the
relationship between their owntheir own trauma and their
vocation as clinicians. I wishthat podcasts like this, or even
a tendency in the world ofpopular medical non fiction, a
(25:53):
place where people get to showup more as themselves and not
just talk about suffering at aremove, that'll open up a
different space of conversation.
Bob Macauley (26:02):
Yeah, I resonate very much with what Chris said.
And for me, this was never thepurpose of writing the book that
I wrote, but one of the resultsof writing the book was tying
things together into more of acoherent narrative of my own
life, so that I understand thatbetter. I also think that there
(26:25):
is, as we are talking, less thantwo weeks away from publication
date of the book is equallyexciting and petrifying, maybe
more petrifying right now thanexciting, but they're kind of
competing with each other rightnow, because before I started
writing the book, I could countthe number of people who knew
(26:46):
that about me on one hand. Andnow I really hope more than five
people buy the book. That'd benice if I need at least two
hands. And I come backoftentimes to a quote that I
think about a lot by JaniceJoplin, who said Freedoms just
another word for nothing left tolose. For me, right now, I look
at it as freedoms, just anotherword for nothing left to hide.
(27:09):
So it's out there, and anyonewho wants to read the book will
know that, and that is a veryfreeing thing, because it takes
work to keep secrets, and it'snice not to have to do that
work. I hope people who read thebook will like if they don't
know about pediatric palliativecare, they'll know about
(27:29):
pediatric palliative care wellwhat it is that we do on a daily
basis, which I think is soimportant. And then I also hope
that when they see somebody whoseems like they have it all
together just walking down thestreet or bumping into somebody,
they might pause and say, Iwonder what that person is
carrying, and maybe that willlead to greater understanding
(27:49):
and compassion.
Daniel Eison (27:52):
This feels like a moment for me to say to our
audience, please, please readthis book. It absolutely does
explain what pediatricpalliative care is all about, in
a way that I think people in thefield and people not in the
field alike can appreciate andunderstand things more deeply.
It helped me understand thingsmore deeply about the work that
(28:13):
we do. And I want to, just like,hand it out on the street
corners to everyone to be like,This is what I do. I'm so proud
of what I do. Look read thisbook. It does such a good job.
And I don't know if this is thepart in the recording where I'm
supposed to give the book aplug, but like, definitely do
read this book. It's really anawesome book.
Bob Macauley (28:29):
I really appreciate that, Dan and not
that it would, if it does make adifference, I would note all
proceeds from the book are goingto charity, primarily to support
our program here in Oregon, butalso a portion. And this is
especially relevant, especiallyrelevant with the conversation
with Chris abortion going todarkness to light, which is a
fabulous organization that isworking to prevent child sexual
(28:51):
abuse.
Sarah Dabagh (28:56):
I think the thing about this episode that was
strange for us is we are so usedto talking about human
suffering, but a very specifickind of multifaceted but
situational human suffering,that encountering a new and
different kind of humansuffering, I was just hesitant
as to how to do it right. That
Daniel Eison (29:16):
comparison struck me, as well as you and I were
thoughtfully, delicately askingquestions. I thought to myself,
This is what we doprofessionally. We ask people
about the worst things in theirlives, and yet it still felt
challenging. I wonder if it'sbecause, like you said, it's a
very different type ofsuffering. And also, I think
(29:40):
there might be somethingdifferent in that we were
talking to colleagues, andthat's not often what we do.
Sarah Dabagh (29:46):
And I think this piece I want to make sure is
evident too, is that this wasthe journey, the self discovery,
journey of two specific peoplehappen to have a tremendous
number of parallels, but is notmeant. To be reflective of
whether or not anyone is anexcellent pediatric palliative
care provider in the absence oftheir own personal trauma.
Daniel Eison (30:06):
Yeah, I think that's really important if we're
talking about takeaways fromthis episode. After we recorded
it, I had a conversation withsomeone who is thinking about
going into pediatric palliativecare, and I was very conscious
of, first of all, not asking thequestion of, well, why? Why'd
you choose this field like,what? What's your dark secret?
And then without my asking, asthis person shared their very
(30:31):
personal experience with griefand loss and illness, I was able
to say, hey, you know you're notalone in having personal
historical reasons for wantingto come into this field. That's
not a bad thing, because it canfeel weird to say, well, I'm
going into this because ofsomething that happened to me.
But actually, it turns out a lotof people do. And
Sarah Dabagh (30:53):
the take home to my take home, I think the piece
I'm really carrying one feelingor idea or fragment of a thought
from this conversation. I thinkthe thing that they said pretty
explicitly at the beginning, butthen I held on to it as we had
the rest of the conversation,was the how do you keep doing
this work? There's thisfulfilling idea to the fact that
you are watching the best ofhumanity, and you are watching a
(31:18):
reminder that there is goodnessin the world, in the way that
people flock to the bedside of adying child, that that is a
reminder of like, the goodnessin the world that I think
sometimes we need. And it'sactually very fulfilling, not
Daniel Eison (31:31):
to be trite about it. But isn't there that quote
from Mr. Rogers about whensomething bad happens, look for
the helpers. And in our line ofwork, we get to see the helpers
all the time.
Sarah Dabagh (31:41):
See the helpers. I think it's also important to say
that we are not the onlyhelpers. Yeah,
Daniel Eison (31:45):
for sure, yeah.
Thanks for listening. Our themesong was written by Kevin
McCloud. You can follow us onblue sky, where our username is
pdal, dot bsky, dot social. Youcan find the notes for this
episode and all the others onour website. Pedipal.org, if
you'd like to submit thoughts,objections or ideas for future
episodes, please reach outthrough the email on our site.
(32:06):
This has been PD, pal, see younext
Sarah Dabagh (32:11):
month. The other thing, I think it's funny, just
I edited this out of thehighlighting, but Chris says in
as we were recording, and Irecognized that when it happened
an exact sentence that he saidin our last episode, really,
yeah. It was the like, oh, pal,I don't care what's that a bunch
of people in like, Jesuit robes,like, oh yeah. It was an exact
to the word sentence. And Isaid, we can't include that
(32:32):
because, like, our listener, ifthey exist, will know that Chris
has a limited number of lines.
Sorry,
Daniel Eison (32:38):
we can't expose him like that. He's willing to
talk about his horriblechildhood trauma. Childhood
Trauma, but if show that he has,Like, a few one liners and He
repeats You
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