July 13, 2025 • 49 mins
You may be someone who has already experienced a 360 life change through ill health, or are currently supporting somebody with a life changing diagnosis. Dr Shanali Perera's own 360 story is one of sudden, abrupt and frightening change. 10 years ago, as a medical doctor, Shanali was specializing in rheumatology with a specific interest in vasculitis, a rare autoimmune disease, only to become diagnosed with it herself. Her fast tracked medical career was derailed, leaving her with uncertainty, loss and fear. It was when she turned to visual digital art that she found not only a new form of expression, but finally regained control of her experience. Today as a practicing artist, including acrylic paint on canvas, her work is at the intersection of art, medical education and patient advocacy. Shanali is an activist, her art, writing and talks put human experience at the center of patient care and medical learning. It's through the therapeutic benefits of art and expression as an alternative language that both clinicians and patients can dramatically improve care and self-management. Her book, Finding Me Beyond Illness, is a visual narrative about her transformation. She illustrates her personal pathway, and invites patients to take similar steps that help make human, medical and art concepts, one conversation.
Discover Shanali Perera: https://www.shanaliperera.com/
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Series Music - Courtesy of Barry J. Gibb
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:03):
Welcome to thispodcast series asking the
question, Can art save us? I'mstarting the first national and
international conversation aboutcourage and curiosity. What do
these qualities really mean, andwhy does it make a big
difference to our mental,societal and democratic health?
I talk to award winning anddiverse artists across the arts
(00:23):
to explore these qualities intheir lives and work both to
inspire and for us all to learn.I'm exploring why we need these
qualities to help change theglobal epidemic of mental
illness, loneliness,polarization of our communities
and even global conflict. If thearts cultivate courage and
curiosity. I'm asking thequestion, Can art save us? You
(00:50):
may be someone who has alreadyexperienced a 360 life change
through ill health, or arecurrently supporting somebody
with a life changing diagnosis.The question of how we cope now
or in the future is core tothe advocacy work of my guest
today, Dr Shanali Perera. Shanali's own 360 story is one of
(01:10):
sudden, abrupt and frighteningchange. 10 years ago, as a
medical doctor, Shanali wasspecializing in rheumatology
with a specific interest invasculitis, a rare autoimmune
disease, only to becomediagnosed with it herself. In
her own words, the high speedtrain of her fast tracked
medical career derailed, leavingher with uncertainty, loss and
(01:34):
fear. It was when she turned tovisual digital art that she
found not only a new form ofexpression, but finally regained
control of her experience. Todayas a practicing artist,
including acrylic paint oncanvas, her work is at the
intersection of art, medicaleducation and patient advocacy.
Shanali is an activist. Herart, writing and talks, put human
(01:57):
experience at the center ofpatient care and medical
learning. It's through thetherapeutic benefits of art and
expression as an alternativelanguage that both clinicians
and patients can dramaticallyimprove care and self
management. Her book Finding MeBeyond Illness, is a visual
narrative about hertransformation. She illustrates
(02:19):
her personal pathway, andinvites patients to take similar
steps that help make human,medical and art concepts, one
conversation. Welcome Shanali,and thank you very much for
joining me today.
Good afternoon, Paula, and thankyou for having me on your show.
Oh, you're
very welcome. And thank you formaking the time. So perhaps the
(02:42):
obvious place to start, ofcourse, is with the life
changing events of yourdiagnosis. And I'm interested in
how becoming a patient in yourwords made you a condition and
dehumanized you as a person.That's a
brilliant question. Paula,firstly, is it all right if I
(03:06):
say something about whatvasculitis
is? Yes, that would be veryhelpful. Thank you. So
vasculitis is one of those rareautoimmune illnesses that cause
inflammation in the bloodvessels, whether they're small,
medium or large, throughout yourbody that supplies various
organs and skin as well asnerves, and it can be a life
(03:30):
threatening disorder. And a lotof the time this condition is
appears or presents itself in avague manner where it could
mimic infection or otherconditions. So to line the dots
is what takes a long time,right? So that's what
sometimes dangerous about it isthat it's, because it's unless
(03:52):
you present with a lifethreatening situation, and at
the onset, a lot of the time ittakes about three to four years
on average, for people to getproperly diagnosed, or, you
know, for the dots to bealigned. So there is a massive
psychological component there aswell when you're going through
this. And I think that'simportant for me to mention
(04:14):
here, because when you, or oneis actually specializing in this
condition. You don't actually,you don't think you're thinking
from a science point of view.And for me, I was, you know,
diagnosing and managing andlistening to my patients
(04:34):
struggles, until one day I wasliving them, you know, yeah,
that transformation, you canonly imagine how humbling it was
Paula, because you have no ideawhat the lived experience of
going through a rare, long termcondition is like you know, you
(04:55):
cannot learn that from atextbook, and it's not
something. That, you know we,you know, we see our patients,
but we don't actually know, orwe don't step inside their
shoes, you know. So when you'reon the other side, you know,
it's a completely differentstory.
Yeah. And of course, I thinkwhat's significant about your
(05:18):
advocacy and your current book,finding me beyond illness is you
are offering really quite uniqueinsights as a medical doctor
with lived experience of aspecific condition and one that
you are actually specializingin. How would you say your focus
(05:39):
has changed from the point ofview of being a doctor with
clinical knowledge to a patientthat still has clinical
knowledge?
Yes, that's a unique situationto be in. Sometimes it's
helpful, sometimes it's not. ButI think for me, I think in the
(06:00):
very beginning, Paula, no matterhow how much knowledge I
had, I found it very difficultto deal with everything that was
going on. So when I said itdehumanized, you asked me this
earlier, it was almost like,imagine you have 10 screens
(06:21):
opened on your computer, and youdon't know how to navigate
between them. You don't have ahow to deal with it User Guide,
because all at once, you're notjust dealing with the physical
symptoms of the condition thatyou're going through. You're
dealing with stuff at work,stuff with your emotions, how
you're dealing with what's goingon, and you know, you're not
(06:43):
sure whether you're going to beable to continue your work, your
relationships, your social life.And there's a whole lot of, you
know, a component to a person,and I think all of them get
affected at once. So I thinkthat was very hard. And I think
no matter how much clinicalknowledge I had, that was very
(07:04):
difficult because I didn't knowhow to navigate through that.
And I think the impact thatsomething like this can have on
one's image or identity, for me,Paula, work doing what I did, I
was a workaholic, and my wholeidentity was what I was doing,
which is, which is, perhaps notthe right attitude, of course,
(07:26):
but I was, that was all my life,it was just, you know, my work,
trying to specialize and get tothat point. If you know, I was
on a, like a conveyor belt, youknow, trying to get there, and
then suddenly, when somethinglike this happens, and you're
lost, because everything thatyou wanted to do or happen has
(07:46):
now gone out of the window. AndI remember the day I had to give
everything up and walk away frommy training. I felt like it
robbed me of all my dreams, myexpectations, and I felt my
image, my identity, wascompletely fractured and
Shanali the person wasconsumed by the condition, and I
(08:08):
was lost as a person. You know,all it was, was I was this
condition.
And I think sadly, it describedwhat must feel like a
bereavement for your own life,there must be so much grief
attached. So whilst you mightlook back and potentially tell
yourself off, for example, forbeing a workaholic, that was
nevertheless the culture of yourlife, and so you've experienced,
(08:33):
if you like, a cultural carcrash at the same time,
particularly with the loss ofidentity and that's equally
an important part of yourself torecover in the healing process.
And it stood out to me that youhave also described yourself in
(08:55):
some of your poetry, almost asbeing a ghost. That you felt
like a ghost in your own life.Is that something that you would
like to share more on?
Absolutely, I couldn't see orrecognize myself when I looked
at myself physically, I had alsochanged, because I was a very
(09:17):
small, tiny person, and then Iwent on so much of steroids, I
was like a baby Michelin. I'm4ft 11, Paula. So you can imagine,
you know, and then suddenly,your physical image was
distorted. And not only that,what was going on, and
there was a period a fewyears where I wasn't sure what
(09:39):
was going on. So, literally,because it took quite some
time for the physical symptomsto come out, and I was one of
those people who didn't present,or who was in the box. You know,
I was completely out of the box.My blood tests were normal, and
I was one of those atypicalpeople. So, literally, I
(10:00):
thought, oh my god, am Iimagining all of this? You know,
for a very long time, it feltlike I am describing symptoms,
but no one else can see it, andit's not caught on any blood
test. And therefore, for me,that was like, oh my god, is
this, you know, am I actually,is something going on, or am I
(10:22):
imagining this? And that made mefeel completely isolated. And it
made me feel like, oh my god, Ican't recognize myself. You know
what's going on? And that'swhat I said in the beginning,
that emotional component of whenyou don't know what you're
dealing with, and maybe peopleare not believing what you're
(10:43):
saying. I think that, to me, wasworse than the physical symptoms
I was experiencing. Yeah,because you can imagine that,
right? I mean, you justthink, Oh, my God, you know. And
of course, don't forget that Ihave knowledge as well. So I
know, I know how it behaves likeso you really think, Oh, my God,
(11:04):
you know, am I like? Am Iactually visualizing this? Am I,
you know, is this for real? AndI think that made me feel like
it made me feel I don'thave a word to describe how it
was Paula, because I think I waslost, I felt isolated. I felt
(11:25):
like, oh my god, you know thereis I don't know how to move
forward.
Yeah, yeah. It's definitely aghosting of your own life. And
unfortunately, this is a reallydistressing part of the
experience that you do hear inother accounts, where a long
(11:46):
diagnosis has taken place and isparticularly problematic when
somebody is atypical, of course,and of course, this is really
what's raised in your wonderfulwork with your book in terms of
art, or the use of visual art,in your case, being able to
(12:10):
convey that hidden world ofillness, that it's able to speak
up for the patient, and it'sable to illustrate what words
cannot.
Absolutely, absolutely. And Ithink Paula one of the things
is that I think you lose controlof your day. You lose control of
(12:31):
how the illness is evolving. Youlose control of your life,
actually. And I did, and Irealized that this is where the
turning point was that actuallyI can control what I create, and
that alone helped me to kind offocus on what I can do versus
(12:55):
what I can't. If that makessense, yes, yeah, absolutely,
yes. So yeah, and that, I thinkthat's where the whole, the
creative process helped, or theart, visually trying,
because you can't see your pain.You can't see what you're going
through, all those emotional theturmoil that you're going
through. And I think every partof my movement was robbed,
(13:18):
whether it was my physicalmovement, with its emotional,
cultural, spiritual, everythingwas robbed by the condition, and
I didn't know how that lookedlike to me. So being able to
actually give a color, give ashape to it, helped me to
understand what it was like andaccept things and cope with what
(13:39):
I was going through better. AndI think art really helped, gave
me that freedom to find meaningto what I was going through, and
being able to talk about it andshare it with others, gave me
purpose. And I think this iswhere you know visually, because
something that is not tangible,something that's invisible, you
(14:00):
know, whether it's physicalillness, pain or emotion of
mental illness, people can't seeit, right? You cannot see what
pain looks like. And also, theperson going through cannot see
what it looks like, right? Butwhen you are able to actually
see it, oh, this is what it'slike, then I think it's a lot
easier. It's like a it's like atool on top of other, you know,
(14:24):
management, other drugs andtherapies people are on just to
have an outlet to express all ofthat, the frustration, the
anger, and, of course, for me,Paula, the illness, even now,
tries to disempower me anddistort my reality whenever it
wants to. And I think being ableto channel that pain that I feel
(14:49):
in my hands onto the canvas,what I'm going through, all the
emotions I'm going through, ontothat canvas, helps me to
transform that pain intosomething that's beautiful.
Yeah. And that is empowering,
yeah. And so that day, if youlike, when you describe yourself
as, you know, being confined tobed with such heavy fatigue and
(15:15):
you happened upon the digitalart tools on your tablet was
really quite a breakthrough dayfor you in terms of being able
to create a new dialog, if youlike, and to even help yourself
understand your own pain,the experience of
(15:36):
your symptoms. And I think forthe listeners, I'd just like to
highlight that a lot of yourartwork in the book shows
progressions in pain that areboth physical and mental.
They're very highly personalizedillustrations of how you felt
and what you were going through.I wondered if to help bring that
(15:59):
to life for the listeners, ifyou'd like to talk about your
use of sharp lines, spirals andcircles that help tell that
narrative.
That's such an intriguingquestion. Paula, no one's
actually asked me that before.Yes, I think so. When I'm in bed
(16:20):
when I first started and tryingto put a color. So we're talking
about a digital canvas, right?So we've got a screen in front
of us, and I never knew, ordidn't actually use logic or
think, Oh, I'm going to use thiscolor. It was very intuitive. So
I would put a color and fill theentire canvas with that color,
(16:41):
let's say, let's say red. Ifilled the whole color of canvas
with red, and then I would juststart to doodle, offload what I
was feeling. And then while Iwas doing so, I would start to
see maybe figures, maybe afigure, forming. And that is
where I then would consciouslytake the eraser and use like a
(17:08):
ink pen, kind of or kind of usethe brush tools finer to get the
lines and the shape that I hadintuitively made. I let my hands
just move without giving toomuch thought to see a shape. And
I kind of, you know, I didn'tthink too much about, oh, this
(17:29):
is how it should be. And thatwas, it was very abstract, and
it was just in the moment. Andthen what I tried to do later on
was to I keep saving them,saving these images, and then I
would go back and add maybe aline, maybe erase it in a way.
(17:51):
Then, oh, this is how it shouldbe, maybe. And I might have a
little think about it and changethe filters. So in the book,
you'll see the same image, butin different shades made, you
know, and that was just to showthat there are so many layers to
our emotions. So like you know,there are
(18:13):
different degrees of pain, andequally, there's different
degrees of frustration anddifferent degrees of anxiety.
And in a day, you can experienceall of them. In an hour, you can
experience all of them. Andthat's what I was trying to show
with the different filters.
I think how that perhaps evolvedfor you. You know the sharp
(18:35):
lines probably the strongest,perhaps representation of pain
or frustration, spirals seem tohelp you travel through what any
one day, or as you just said,any one hour may feel like. But
it's also interesting to me thatcircles represented hope.
(18:59):
Yes, and
hope and it's also thatcontinuation, and there is so
much, there's so much ofspirituality linked to it as
well, and different kind ofpositive energies that people
link to these spirals. And Ididn't realize a couple of
things I would want to quicklynote or share with you is that
(19:23):
as time had gone, I had spent alot of time, I made the head, the
spirals inside the heads, a lotmore clearer, and I didn't know
why I was doing that, until veryrecently, someone asked me,
especially with my acrylic and Ithen thought, Oh, my God,
perhaps I'm using a lot of timetrying to get the spirals right
(19:46):
inside ahead is because I lostcontrol. Like it's it's about
control. Maybe, you know, I'mtrying to regain that control.
And I thought, That'sinteresting, very
subconsciously, that's what I'vebeen doing. And I didn't know
this until I was researchingsome of Carl Jung's work. What
Carl Jung said was thatapparently circular movements or
(20:09):
circular shapes are very calmingto our brain. So if you look at
the mandala the Tibetan, youknow, in Buddhism, or, you know,
so many kind of spirals andcircular stuff we have in our
history. We have a lot, don'twe? And, you know, and perhaps,
you know, there was something toit, and I, I was intrigued by
(20:31):
it, because I verysubconsciously did it.
And I think your experience ofart and developing as an artist
has really helped you uncoveryour own subconscious or
unconscious mind that has reallyhelped you face the experience
you've had and how you've beenable to not only adjust but
(20:56):
accept who you are as somebodymanaging vasculitis?
Yes, absolutely. And Paula, whenyou're also a woman who is
dealing with, you know, I was inmy early 30s when it happened,
and I think sometimes thestruggles women go through are,
(21:21):
there's a different set ofstruggles, isn't there? And I
remember, I, you know, everytime I went to anyone with various
episodes or, you know, you're afemale medical registrar, this
might be stress. And, you know,you kind of get there are
certain things attached, youknow, and you kind of have to
face them as well. And, youknow, I was not married, I
(21:45):
didn't have children, and oneother thing at that moment in
time, and or is she attentionseeking, you know, there was
another thing I went through. SoI think it was harder for me as
a woman to go through some ofthese things, and also the
cultural expectations, theexpectations society has on you,
you know, there were various andof course, being unable to keep
(22:07):
up with everyone around you, youknow. So you kind of, you feel
that your whole life is suddenlystolen, and you know, everyone
else is moving forward, andyou're stuck somewhere, you
know. And it was that aspect wasvery difficult, and that's why a
lot of the work that I do,especially with the artivism, so
using art as activism and tryingto also highlight women's
(22:32):
struggles, what women go throughas well through my art, because
I'm a woman who's going throughsomething like that and
trying to open culturalconversations as well. Because I
think different culturesperceive illness in a different
way, and how people, you know,how people respond to pain, is
(22:52):
also different in differentcultures. So it's kind of
opening a lot of doors.
Yes, and I think all of that isof critical importance.
Assumptions that are madeaccording to gender, age, race,
you know, are documented, andit's a huge problem for women
(23:13):
who feel that they're veryquickly pushed into some kind of
psychiatric box. And of course,that's made even more difficult
if that woman is presenting withatypical symptoms, and it all
adds to the distress. So whetherthat's assumptions, prejudice,
unconscious bias, is allsomething that has to inform
(23:35):
medical knowledge, which, ofcourse, is something you're
raising in general, how we canimprove our medical
understanding knowledge, ourpatient care. And I think what's
also interesting about the factthat you were able to develop
more of your own inner dialog,if you like, about how you were
(23:58):
coping, how you were going tonavigate your next steps is, of
course, painting, and using yourhands, whether it's digital or
on canvas, is, of course,difficult. It causes you pain.
And so I'm interested in how youare using art to navigate pain,
(24:19):
whether it's mental or physicalpain, whilst at the same same
time it could cause you pain.
That's what it is sointriguing, Paula, because yes,
every time I draw with thatpain, but I think being able to
use that pen, especially nowwith my acrylic work, where I
(24:41):
just, like, pour paint onto thecanvas and just kind of go with
it. I think for me, being ableto capture that pain on the
canvas is empowering, and I think that I am on that
thought that I'm going toI'm going to distort the
(25:01):
illness reality. It keepsdistorting my reality, but I am
going to use the pain to distortthe reality, the illness
reality. And you know how it'strying to disempower me? And I
think that's what drives it. AndI think sometimes I've created
some of my best work throughthat pain.
(25:24):
Yeah, perhaps it's almost anauthenticity, you know, of the
pain driving the work. Perhapsthat's what drives what you
consider to be better work.
Yes, absolutely. it's that wholekind of and you know, when, if
I've overused my hands, theythey shake as well. So I how
(25:46):
they shake, especially with theacrylic paints I use that, you
know, some of the, some of thedots that are on the canvas,
it's actually because my handhas, you know, has been shaking,
and I'm like, okay, yes, that's,you know, and it takes a lot to
make that or create that piece.And I, what I would love for
(26:07):
people to get from that is that,you know, just for a moment, I
think, pause and connect and tryand see beyond what meets the
eye, because sometimes we justsee something for what it is,
but there's so much more goingon. And I think that, and a lot
of us, Paula, when you lookat me, I look well, and you
(26:29):
know, physically, you can'treally see whether there is
anyone any invisible illness islike that, whether it's mental
illness or physical illness orpain, because you, you know you
try and look your best, and youyou know, you try to be the best
you can be. And I thinksometimes people just see the
outward appearance as, oh,there's nothing wrong with you.
(26:53):
I think you raised an importantpoint about cultural definitions
or beliefs, if you like, aroundillness and pain. And this has
come up elsewhere in the series,which is really interesting when
we look at the experience ofhealth, ill health, pain, when
(27:14):
it's culturally rooted. And oneof the things I was interested
in when I was researching yourlife and work is I understand
you speak two languages, and onelanguage relates particularly to
Buddhist literature, and thatalerted me to perhaps your
(27:38):
having a different set ofperceptions or cultural beliefs
that that may have even helpedyou in your journey, if your
language has helped root you,perhaps in Buddhist
interpretations, I wondered if,if there might may be examples
(27:59):
of that.
Yes. Yes. Fascinating question.Paula, so I am a Buddhist, and I
practice the sort of theBuddhist, the philosophy of
Buddhism, let's say the secondlanguage, the language that I
speak is a Sinhala, which isderived from Sanskrit. And I am,
(28:19):
I was born and raised in SriLanka. So Sri Lanka is a
predominantly Buddhist country,and I grew up with the
philosophy of Buddhism and interms of the whole concept of
impermanence. And I think thatreally helped me in the sense
that, just like anything you'reif you're in pain, that pain is
(28:44):
not going to be permanent. Oryou're going through a very
stormy, horrible period, thatperiod, again is not going to be
permanent, just like you know,in most situations, are not
going to be lasting forever. AndI think that concept as well as
I think my perception of lifeand how I view things was very I
(29:09):
think being from that backgroundculture really helped in, in a
way, to kind of think, Okay,this has happened. I'm going to
look at this differently. Youknow, it happened for a reason.
And I think for me, this mightsound insane, but I think I
wouldn't be the person I am now,if it if this hadn't happened to
(29:31):
me, I wouldn't have found theresilience, the strength I had,
and also the way I look atthings now is so different to
what I was, 14, well, well, Iwas in my early days of, say,
going back 15 years, let's say Iwas someone completely
different. I was with blinkerson, you know, I was not, you
(29:55):
know, I was just moving on afast track. You know. And I was
only thinking of one thing, or,you know, I need to get to this
career, and that's it, whereaswhen something happened and life
paused completely or forced meto slow down, and literally,
it's not like going at, youknow, 120 miles an hour on the
(30:17):
motorway. Literally, you are at50 miles an hour or 40 miles an
hour, and you are actually ableto see what's around you. And
yes, it was not something greatto happen, but I think even in
the most ugliest of situations,something good can come out of
it. And I think that thepersonality, or the newer
(30:40):
version of who I am now is, Ithink, because of that struggle
and trying to find your way backand trying to come to terms
with, you know, how do things happen, bad things
happen. How do we move forward,why we are dealing with them?
And I think that is somethingthat I think coming from that
(31:03):
background helped.
Yeah, absolutely. I thinkraising impermanence is so
interesting because I think itrelates as well to how you talk
about acceptance in your book.And acceptance, of course, is
very core to mindfulnesspractice, which listeners may or
(31:24):
may not be involved with. Butit's an interesting concept.
It's difficult in thatacceptance can be perceived as a
form of disempowerment, if youlike, oh, I have to just accept
this, or I have to just get onwith it. Oh, I'm just lumbered
with this, whereas actually itcan function in very much the
opposite way. And I think thatperhaps what you were just
(31:47):
touching on is how you talkabout changing from "I" to illness
to finding a new "I", and, infact, acceptance is relating to
the wisdom of flux. Would yousay that's a fair interpretation
to make?
Spot on Paula? Spot on. No mansteps into the same river twice
(32:11):
for he is not the same personsix months ago and it's not the
same river six months ago. Yeah,that's not the correct saying,
but it's Heraclitus. Heraclitus saidthat, and that was, that was my
interpretation of it. But that'strue, isn't it? Because it's
that, it's that flux. Weare constantly in flux. And I
(32:32):
think who we were six months agoor three months ago, who we were
yesterday, you know, we aretrying to, I think we could all,
all of us could find a newer,better version of ourselves as
a process, yes, and I thinkthat is something that, whether
we have an illness or achallenging situation or we're
(32:52):
just facing, you know,everyday life, I think that all
of us can find a differentversion, or work towards finding
a better version than who wewere.
I'm interested in general withthis series in how the arts are
perhaps underestimated in termsof the significant role the arts
(33:18):
can play in terms of cultivatingcourage and curiosity, which I
think both relates, importantlyto wellbeing, to health and
wellbeing on many differentlevels, including, in fact,
societal health as well. And I'minterested thinking about that
(33:39):
in terms of another one of yourpoems in the book, The Face of
Courage, where you ask, what iscourage? And do you think that
that maybe is something that isborn out of flux, being able to
accept and understand what fluxis, and being able to embrace
(34:00):
the wisdom of flux?
Absolutely. I think all of us,we all have courage within us in
different levels. And I thinkthe courage that brings that
comes out of understanding whatflux is and understanding or
(34:22):
living through a certainchallenging experience. I think
perhaps a different type ofcourage, I think, and I think
that is something that we allhave. It is that we don't always
tap into that, or we are notgiven the opportunity to tap
into that. And I think thedifferent forms of courage, or
(34:43):
the faces of courage, we all, weall have it. We just don't
actually see it. That's what I'mtrying to say in that poem.
I think it's such an importantquestion to raise, which your
poem does you know? Youliterally ask, What is courage?
Because, of course, we so oftenassociate courage with heroics,
(35:05):
but actually vulnerability is socore to courage and how we face
certain challenges, however bigor small, everything is scaled
to the person experiencing thatchallenge. And I just felt it
was a really important qualityto acknowledge that in our own
(35:29):
recovery, self management ofhealthcare, it can take courage,
because, of course, so muchacceptance can be involved in
terms of losses, changes,whether that's the loss of
identity, whether it's the lossperhaps, of some physical
movement, for example. So itdoes take courage, I think, and
(35:53):
I think art helps us cultivatecourage, even if it's initially
through expression, throughhelping ourselves understand
what our interpretation is,particularly when it is complex.
It also, I believe, offers analternative language with
clinicians that both parties canrelate to on an equal footing. I
(36:20):
think it's a good example of howart, the use of art in our care,
can offer an equality in thatrelationship between clinician
and patients.
Absolutely. Paula, absolutely.But I think there is there's
a massive, massive gap betweenwhat a person is going through,
(36:44):
that lived experience that thehidden challenges they go
through, not just their physicalsymptoms, but just everyday
challenges that are unseen. Andthe on the other hand, the
clinicians understanding of whatit's like, that gap is there
because of that invisibility andusing art or putting a color and
(37:06):
shape to pain? If I ask you, ifI ask the listeners, you know,
we've all experienced pain insome shape or form, whether it's
a headache or a toothache orjust anxiety causing you stress,
that's pain, still. Can you puta color to it. Can you put a
shade to it right? And by doingso, by making that invisible
(37:29):
pain visible, are you able torelate to it better? Do you
perceive it better? You know? Doyou understand it better? And
similarly, that's for the persongoing through it similarly, for
the people looking after you, orpeople who are around you and
supporting you, could theyunderstand it better, because
(37:52):
it's now more tangible, youknow? So I think that is where
the concept of art or makingsomething that's invisible
visible. This is what mypainting looks like. This is
what my everyday looks like, notonly just showing that. I think
when someone looks at a piece ofart, there is a certain emotion
that it evokes. And I think weare all human, even clinicians,
(38:18):
even whether you're you know anyallied health professional.
We're all, you know, we're allhuman. We've got through
emotion. So if you know havingthose emotions, okay, this is
what it's like for this personto go through that it's not just
seeing it, but also tapping intothat emotion. So I think art can
certainly add that extra sensorydimension, not just visually,
(38:41):
but also, I think, you know, ittaps into different sensory
dimensions, I think, and gettingpeople to actually pause and
feel and connect.
This brings me to a quote thatyou use, that I particularly
loved to read. There's variousquotes that you refer to
throughout the book, and thiswas Vincent van Gogh. And the
(39:05):
quote is, "If you hear a voicewithin you say, you cannot paint,
then by all means, paint, andthat voice will be silenced." And
I felt that was such a beautifuland important statement, because
it speaks directly tomindfulness, to changing
(39:26):
negative thinking patterns, toaddressing who and how we have
relationships with the arts,that it should be a normal and
ordinary part of all of ourexperience, but particularly
when it comes to liberating ourown minds, whether that's how we
(39:48):
think, or whether it'sliberating ourselves from pain,
or whether it's liberating ourexpectations of the future.
Absolutely. Okay. I mean, that'sa very, I love that quote. I
mean, all the quotes that I'veused have been very personal to
me. I mean, art can reach youand teach you, and I think it's
(40:12):
something that is inspiring, andit can educate and empower all
at the same time. And this issomething very interesting. A
person, a participant in aresearch study, mentioned it was
a group of women who wereactually who all had chronic
illnesses, and they were drawingwhat it was like to live with
(40:35):
these chronic illnesses. Andwhen they were asked, one of the
participants said, Art is alifestyle coat hanger, which
really stayed with me, becauseit, of course, it is, and
especially for someone like me,it actually also it was not just
a tool to express what I wasgoing through and cope with what
I was going through or what I'mstill going through. It's also
(40:58):
it filled an occupational voidfor me.
So if we were to go to a pieceof your artwork in the book,
which very much stands out as astatement piece, it's called
Inner Turmoil. So for listeners,this is an image where you're
effectively caged as a patientwrapped wrapped in barbed wire.
(41:22):
There's no control. There's nosense of any liberation. It's
turmoil encaged. And I justfelt that there must be such a
significant contrast between whoyou were then in that image as a
(41:42):
patient to how you mightdescribe yourself as a patient
today that has had the fortuneto develop an art practice as
part of their self care.
Oh, my God, Paula, that is sucha, yeah, that's a brilliant
(42:02):
piece to bring up and and touchon and talk about then and now,
because I think at that momentin time, I felt, you know,
trapped, so trapped and lostand, you know, trapped behind
all those social expectations,being unable to move forward,
just being consumed and lostand, you know, not knowing, how
(42:26):
do I walk? How do I get back upto you know that in the last
10, years or so, let's say,when I've been able to use art
to defy being defined by theillness. And, you know, keep
moving forward with it. Youknow, publish a book and have
(42:49):
one of my pieces. Actually, Iwas one of my pieces, which is
also in the book, is was part ofa social justice art exhibit
during the Venice Biennale lastyear, and so, you know, and it
was just great to be suddenly,you know, move out there, you
know, and say, Hey, I'm actuallymoving forward with my life,
(43:13):
using art as a tool. But alsoI'm an artist as you know,
I'm now, confidently, I can sayI'm an artist, you know, 10, 15,
years ago, when things justhappened and I was using art, I
was like, Oh, I'm just usingart. You know, I wasn't, I
wasn't able to even say I'm anartist or call myself an artist.
But, you know, I can now callmyself an artist. And I think
(43:36):
you know that that journey hadwas very adventurous. From that
barbed wire trapped person tocoming out and saying, hey, you
know, I'm not the illness. I ama person. First, that was my
mantra, I made that mymantra in 2021 when I did a
(43:57):
walk, a 5k walking challenge forVasculatis UK to say, I'm not
the illness, I'm a person first.So I think, you know, I've come
a long way from that image,
absolutely and so perhaps thisis a good time to ask the series
question I never imagined. It'sa simple yes or no answer,
(44:21):
but in terms of your experience,can art save us?
I think art certainly gives usthe freedom to explore, expand
and express who we are, and inthat sense, it can certainly
save us from difficultsituations. It can save us from
(44:43):
challenging situations, and Ithink it can certainly save us
from having limited, narrowperspectives how we view things,
and certainly change a lot whenwe explore. Or and expand and
express. You know what it'slike, our inner self, the inner
(45:06):
dialog. Because a lot of us,Paula, how many of us, right at
the end of the day, or evenduring the day, how many times
do we take two minutes to sitand reflect? You know, like we
dwell on everything that's gonebad. Yeah, you know, I could
have done this, or I should havesaid this, you know, we but we
(45:28):
do not take the time to yes,this happened. Hey, next time,
I'll do it better. Or I did thiswell today, or say something
good about or think, you know,pick something that was
positive. We don't do that alot. I think a lot of us tend to
focus on the negative more thanthe positive. And I think, you
(45:49):
know, being able to expresssomething, have color, you know,
around you, and being able tokind of take five minutes, you
know, during your break, anddraw something or doodle, you
know, have a micro break andkind of put, put a color and
shape, and just, I think thatcan certainly help us to expand
(46:11):
or find different depths, to uschange our perspectives. And
maybe, you know, challenge whatwe are, what we or how we think.
And I think we don't challengeourselves enough, I feel, and I
think sometimes challenge how wethink or how we see things, or
we just sometimes accept certainthings and and I think it's
(46:33):
always, you know, important toquestion, why is this happening?
I need to question that all thetime. Why? Why? Why
do I use art? And, you know, andit's easy for me to say, oh,
gosh, yes, because art is XYZ.For me, art is a visual
language. And all the things youdescribed it, it has and it
(46:54):
helps me to transcend my pain,you know, pain, and it helps me
to put a positive spin onthings, and also it helps me to
inspire, educate and empowerothers that are going through
similar journeys. Being able totalk to you today and share what
I have gone through and share mythoughts and ideas, hopefully
(47:18):
will inspire others goingthrough similar situations, and
support them and feel thatthey're not alone, and there are
so many, it doesn't have to beit doesn't have to be visual
art. It could be cooking, itcould be gardening, it could be
dance music, anything that'screative, you know, that's an
outlet.
Yeah, absolutely, it really is alovely example and testimony to
(47:42):
how art as a tool can becomesuch a friend to us, and also an
important reminder of just theplayfulness and the joy of our
just fun doodling, but also allthe way through to significant
forms of expression. It'scertainly not about being judged
in terms of the art work that'sproduced. It's about the
(48:05):
relationship that we have withit. Unfortunately, there is a
status divide that existsbetween the arts and sciences,
but I'll close with a quote youuse that may benefit listeners
to consider their ownrelationship with the arts. And
that's Leonardo da Vinci. "Art isthe queen of all sciences."
(48:31):
Shanali, I really do want tosay thank you for your time and
for making time when you have somany various things to manage,
and from a health perspective,it really is appreciated. I will
signpost to the listeners yourwebsite so they can follow up,
discover the book and takeexamples, perhaps for their own
(48:52):
healthcare, or people they'resupporting with the messaging
that you share throughout thebook. And as ever, to the
listeners, thank you for joiningme, and please do remember share
this free to listen series tohelp make the arts all of ours.
Thank you so much. Shanali.
Thank you, Paula, thank you somuch for having me, and it was a
(49:14):
pleasure to speak to you.
I've really enjoyed it. Thankyou again. Likewise, likewise.
Take care, bye.
Welcome to thispodcast series asking the
question, Can art save us? I'mstarting the first national and
international conversation aboutcourage and curiosity. What do
these qualities really mean, andwhy does it make a big
difference to our mental,societal and democratic health?
I talk to award winning anddiverse artists across the arts
(00:23):
to explore these qualities intheir lives and work both to
inspire and for us all to learn.I'm exploring why we need these
qualities to help change theglobal epidemic of mental
illness, loneliness,polarization of our communities
and even global conflict. If thearts cultivate courage and
curiosity. I'm asking thequestion, Can art save us? You
(00:50):
may be someone who has alreadyexperienced a 360 life change
through ill health, or arecurrently supporting somebody
with a life changing diagnosis.The question of how we cope now
or in the future is core tothe advocacy work of my guest
today, Dr Shanali Perera. Shanali's own 360 story is one of
(01:10):
sudden, abrupt and frighteningchange. 10 years ago, as a
medical doctor, Shanali wasspecializing in rheumatology
with a specific interest invasculitis, a rare autoimmune
disease, only to becomediagnosed with it herself. In
her own words, the high speedtrain of her fast tracked
medical career derailed, leavingher with uncertainty, loss and
(01:34):
fear. It was when she turned tovisual digital art that she
found not only a new form ofexpression, but finally regained
control of her experience. Todayas a practicing artist,
including acrylic paint oncanvas, her work is at the
intersection of art, medicaleducation and patient advocacy.
Shanali is an activist. Herart, writing and talks, put human
(01:57):
experience at the center ofpatient care and medical
learning. It's through thetherapeutic benefits of art and
expression as an alternativelanguage that both clinicians
and patients can dramaticallyimprove care and self
management. Her book Finding MeBeyond Illness, is a visual
narrative about hertransformation. She illustrates
(02:19):
her personal pathway, andinvites patients to take similar
steps that help make human,medical and art concepts, one
conversation. Welcome Shanali,and thank you very much for
joining me today.
Good afternoon, Paula, and thankyou for having me on your show.
Oh, you're
very welcome. And thank you formaking the time. So perhaps the
(02:42):
obvious place to start, ofcourse, is with the life
changing events of yourdiagnosis. And I'm interested in
how becoming a patient in yourwords made you a condition and
dehumanized you as a person.That's a
brilliant question. Paula,firstly, is it all right if I
(03:06):
say something about whatvasculitis
is? Yes, that would be veryhelpful. Thank you. So
vasculitis is one of those rareautoimmune illnesses that cause
inflammation in the bloodvessels, whether they're small,
medium or large, throughout yourbody that supplies various
organs and skin as well asnerves, and it can be a life
(03:30):
threatening disorder. And a lotof the time this condition is
appears or presents itself in avague manner where it could
mimic infection or otherconditions. So to line the dots
is what takes a long time,right? So that's what
sometimes dangerous about it isthat it's, because it's unless
(03:52):
you present with a lifethreatening situation, and at
the onset, a lot of the time ittakes about three to four years
on average, for people to getproperly diagnosed, or, you
know, for the dots to bealigned. So there is a massive
psychological component there aswell when you're going through
this. And I think that'simportant for me to mention
(04:14):
here, because when you, or oneis actually specializing in this
condition. You don't actually,you don't think you're thinking
from a science point of view.And for me, I was, you know,
diagnosing and managing andlistening to my patients
(04:34):
struggles, until one day I wasliving them, you know, yeah,
that transformation, you canonly imagine how humbling it was
Paula, because you have no ideawhat the lived experience of
going through a rare, long termcondition is like you know, you
(04:55):
cannot learn that from atextbook, and it's not
something. That, you know we,you know, we see our patients,
but we don't actually know, orwe don't step inside their
shoes, you know. So when you'reon the other side, you know,
it's a completely differentstory.
Yeah. And of course, I thinkwhat's significant about your
(05:18):
advocacy and your current book,finding me beyond illness is you
are offering really quite uniqueinsights as a medical doctor
with lived experience of aspecific condition and one that
you are actually specializingin. How would you say your focus
(05:39):
has changed from the point ofview of being a doctor with
clinical knowledge to a patientthat still has clinical
knowledge?
Yes, that's a unique situationto be in. Sometimes it's
helpful, sometimes it's not. ButI think for me, I think in the
(06:00):
very beginning, Paula, no matterhow how much knowledge I
had, I found it very difficultto deal with everything that was
going on. So when I said itdehumanized, you asked me this
earlier, it was almost like,imagine you have 10 screens
(06:21):
opened on your computer, and youdon't know how to navigate
between them. You don't have ahow to deal with it User Guide,
because all at once, you're notjust dealing with the physical
symptoms of the condition thatyou're going through. You're
dealing with stuff at work,stuff with your emotions, how
you're dealing with what's goingon, and you know, you're not
(06:43):
sure whether you're going to beable to continue your work, your
relationships, your social life.And there's a whole lot of, you
know, a component to a person,and I think all of them get
affected at once. So I thinkthat was very hard. And I think
no matter how much clinicalknowledge I had, that was very
(07:04):
difficult because I didn't knowhow to navigate through that.
And I think the impact thatsomething like this can have on
one's image or identity, for me,Paula, work doing what I did, I
was a workaholic, and my wholeidentity was what I was doing,
which is, which is, perhaps notthe right attitude, of course,
(07:26):
but I was, that was all my life,it was just, you know, my work,
trying to specialize and get tothat point. If you know, I was
on a, like a conveyor belt, youknow, trying to get there, and
then suddenly, when somethinglike this happens, and you're
lost, because everything thatyou wanted to do or happen has
(07:46):
now gone out of the window. AndI remember the day I had to give
everything up and walk away frommy training. I felt like it
robbed me of all my dreams, myexpectations, and I felt my
image, my identity, wascompletely fractured and
Shanali the person wasconsumed by the condition, and I
(08:08):
was lost as a person. You know,all it was, was I was this
condition.
And I think sadly, it describedwhat must feel like a
bereavement for your own life,there must be so much grief
attached. So whilst you mightlook back and potentially tell
yourself off, for example, forbeing a workaholic, that was
nevertheless the culture of yourlife, and so you've experienced,
(08:33):
if you like, a cultural carcrash at the same time,
particularly with the loss ofidentity and that's equally
an important part of yourself torecover in the healing process.
And it stood out to me that youhave also described yourself in
(08:55):
some of your poetry, almost asbeing a ghost. That you felt
like a ghost in your own life.Is that something that you would
like to share more on?
Absolutely, I couldn't see orrecognize myself when I looked
at myself physically, I had alsochanged, because I was a very
(09:17):
small, tiny person, and then Iwent on so much of steroids, I
was like a baby Michelin. I'm4ft 11, Paula. So you can imagine,
you know, and then suddenly,your physical image was
distorted. And not only that,what was going on, and
there was a period a fewyears where I wasn't sure what
(09:39):
was going on. So, literally,because it took quite some
time for the physical symptomsto come out, and I was one of
those people who didn't present,or who was in the box. You know,
I was completely out of the box.My blood tests were normal, and
I was one of those atypicalpeople. So, literally, I
(10:00):
thought, oh my god, am Iimagining all of this? You know,
for a very long time, it feltlike I am describing symptoms,
but no one else can see it, andit's not caught on any blood
test. And therefore, for me,that was like, oh my god, is
this, you know, am I actually,is something going on, or am I
(10:22):
imagining this? And that made mefeel completely isolated. And it
made me feel like, oh my god, Ican't recognize myself. You know
what's going on? And that'swhat I said in the beginning,
that emotional component of whenyou don't know what you're
dealing with, and maybe peopleare not believing what you're
(10:43):
saying. I think that, to me, wasworse than the physical symptoms
I was experiencing. Yeah,because you can imagine that,
right? I mean, you justthink, Oh, my God, you know. And
of course, don't forget that Ihave knowledge as well. So I
know, I know how it behaves likeso you really think, Oh, my God,
(11:04):
you know, am I like? Am Iactually visualizing this? Am I,
you know, is this for real? AndI think that made me feel like
it made me feel I don'thave a word to describe how it
was Paula, because I think I waslost, I felt isolated. I felt
(11:25):
like, oh my god, you know thereis I don't know how to move
forward.
Yeah, yeah. It's definitely aghosting of your own life. And
unfortunately, this is a reallydistressing part of the
experience that you do hear inother accounts, where a long
(11:46):
diagnosis has taken place and isparticularly problematic when
somebody is atypical, of course,and of course, this is really
what's raised in your wonderfulwork with your book in terms of
art, or the use of visual art,in your case, being able to
(12:10):
convey that hidden world ofillness, that it's able to speak
up for the patient, and it'sable to illustrate what words
cannot.
Absolutely, absolutely. And Ithink Paula one of the things
is that I think you lose controlof your day. You lose control of
(12:31):
how the illness is evolving. Youlose control of your life,
actually. And I did, and Irealized that this is where the
turning point was that actuallyI can control what I create, and
that alone helped me to kind offocus on what I can do versus
(12:55):
what I can't. If that makessense, yes, yeah, absolutely,
yes. So yeah, and that, I thinkthat's where the whole, the
creative process helped, or theart, visually trying,
because you can't see your pain.You can't see what you're going
through, all those emotional theturmoil that you're going
through. And I think every partof my movement was robbed,
(13:18):
whether it was my physicalmovement, with its emotional,
cultural, spiritual, everythingwas robbed by the condition, and
I didn't know how that lookedlike to me. So being able to
actually give a color, give ashape to it, helped me to
understand what it was like andaccept things and cope with what
(13:39):
I was going through better. AndI think art really helped, gave
me that freedom to find meaningto what I was going through, and
being able to talk about it andshare it with others, gave me
purpose. And I think this iswhere you know visually, because
something that is not tangible,something that's invisible, you
(14:00):
know, whether it's physicalillness, pain or emotion of
mental illness, people can't seeit, right? You cannot see what
pain looks like. And also, theperson going through cannot see
what it looks like, right? Butwhen you are able to actually
see it, oh, this is what it'slike, then I think it's a lot
easier. It's like a it's like atool on top of other, you know,
(14:24):
management, other drugs andtherapies people are on just to
have an outlet to express all ofthat, the frustration, the
anger, and, of course, for me,Paula, the illness, even now,
tries to disempower me anddistort my reality whenever it
wants to. And I think being ableto channel that pain that I feel
(14:49):
in my hands onto the canvas,what I'm going through, all the
emotions I'm going through, ontothat canvas, helps me to
transform that pain intosomething that's beautiful.
Yeah. And that is empowering,
yeah. And so that day, if youlike, when you describe yourself
as, you know, being confined tobed with such heavy fatigue and
(15:15):
you happened upon the digitalart tools on your tablet was
really quite a breakthrough dayfor you in terms of being able
to create a new dialog, if youlike, and to even help yourself
understand your own pain,the experience of
(15:36):
your symptoms. And I think forthe listeners, I'd just like to
highlight that a lot of yourartwork in the book shows
progressions in pain that areboth physical and mental.
They're very highly personalizedillustrations of how you felt
and what you were going through.I wondered if to help bring that
(15:59):
to life for the listeners, ifyou'd like to talk about your
use of sharp lines, spirals andcircles that help tell that
narrative.
That's such an intriguingquestion. Paula, no one's
actually asked me that before.Yes, I think so. When I'm in bed
(16:20):
when I first started and tryingto put a color. So we're talking
about a digital canvas, right?So we've got a screen in front
of us, and I never knew, ordidn't actually use logic or
think, Oh, I'm going to use thiscolor. It was very intuitive. So
I would put a color and fill theentire canvas with that color,
(16:41):
let's say, let's say red. Ifilled the whole color of canvas
with red, and then I would juststart to doodle, offload what I
was feeling. And then while Iwas doing so, I would start to
see maybe figures, maybe afigure, forming. And that is
where I then would consciouslytake the eraser and use like a
(17:08):
ink pen, kind of or kind of usethe brush tools finer to get the
lines and the shape that I hadintuitively made. I let my hands
just move without giving toomuch thought to see a shape. And
I kind of, you know, I didn'tthink too much about, oh, this
(17:29):
is how it should be. And thatwas, it was very abstract, and
it was just in the moment. Andthen what I tried to do later on
was to I keep saving them,saving these images, and then I
would go back and add maybe aline, maybe erase it in a way.
(17:51):
Then, oh, this is how it shouldbe, maybe. And I might have a
little think about it and changethe filters. So in the book,
you'll see the same image, butin different shades made, you
know, and that was just to showthat there are so many layers to
our emotions. So like you know,there are
(18:13):
different degrees of pain, andequally, there's different
degrees of frustration anddifferent degrees of anxiety.
And in a day, you can experienceall of them. In an hour, you can
experience all of them. Andthat's what I was trying to show
with the different filters.
I think how that perhaps evolvedfor you. You know the sharp
(18:35):
lines probably the strongest,perhaps representation of pain
or frustration, spirals seem tohelp you travel through what any
one day, or as you just said,any one hour may feel like. But
it's also interesting to me thatcircles represented hope.
(18:59):
Yes, and
hope and it's also thatcontinuation, and there is so
much, there's so much ofspirituality linked to it as
well, and different kind ofpositive energies that people
link to these spirals. And Ididn't realize a couple of
things I would want to quicklynote or share with you is that
(19:23):
as time had gone, I had spent alot of time, I made the head, the
spirals inside the heads, a lotmore clearer, and I didn't know
why I was doing that, until veryrecently, someone asked me,
especially with my acrylic and Ithen thought, Oh, my God,
perhaps I'm using a lot of timetrying to get the spirals right
(19:46):
inside ahead is because I lostcontrol. Like it's it's about
control. Maybe, you know, I'mtrying to regain that control.
And I thought, That'sinteresting, very
subconsciously, that's what I'vebeen doing. And I didn't know
this until I was researchingsome of Carl Jung's work. What
Carl Jung said was thatapparently circular movements or
(20:09):
circular shapes are very calmingto our brain. So if you look at
the mandala the Tibetan, youknow, in Buddhism, or, you know,
so many kind of spirals andcircular stuff we have in our
history. We have a lot, don'twe? And, you know, and perhaps,
you know, there was something toit, and I, I was intrigued by
(20:31):
it, because I verysubconsciously did it.
And I think your experience ofart and developing as an artist
has really helped you uncoveryour own subconscious or
unconscious mind that has reallyhelped you face the experience
you've had and how you've beenable to not only adjust but
(20:56):
accept who you are as somebodymanaging vasculitis?
Yes, absolutely. And Paula, whenyou're also a woman who is
dealing with, you know, I was inmy early 30s when it happened,
and I think sometimes thestruggles women go through are,
(21:21):
there's a different set ofstruggles, isn't there? And I
remember, I, you know, everytime I went to anyone with various
episodes or, you know, you're afemale medical registrar, this
might be stress. And, you know,you kind of get there are
certain things attached, youknow, and you kind of have to
face them as well. And, youknow, I was not married, I
(21:45):
didn't have children, and oneother thing at that moment in
time, and or is she attentionseeking, you know, there was
another thing I went through. SoI think it was harder for me as
a woman to go through some ofthese things, and also the
cultural expectations, theexpectations society has on you,
you know, there were various andof course, being unable to keep
(22:07):
up with everyone around you, youknow. So you kind of, you feel
that your whole life is suddenlystolen, and you know, everyone
else is moving forward, andyou're stuck somewhere, you
know. And it was that aspect wasvery difficult, and that's why a
lot of the work that I do,especially with the artivism, so
using art as activism and tryingto also highlight women's
(22:32):
struggles, what women go throughas well through my art, because
I'm a woman who's going throughsomething like that and
trying to open culturalconversations as well. Because I
think different culturesperceive illness in a different
way, and how people, you know,how people respond to pain, is
(22:52):
also different in differentcultures. So it's kind of
opening a lot of doors.
Yes, and I think all of that isof critical importance.
Assumptions that are madeaccording to gender, age, race,
you know, are documented, andit's a huge problem for women
(23:13):
who feel that they're veryquickly pushed into some kind of
psychiatric box. And of course,that's made even more difficult
if that woman is presenting withatypical symptoms, and it all
adds to the distress. So whetherthat's assumptions, prejudice,
unconscious bias, is allsomething that has to inform
(23:35):
medical knowledge, which, ofcourse, is something you're
raising in general, how we canimprove our medical
understanding knowledge, ourpatient care. And I think what's
also interesting about the factthat you were able to develop
more of your own inner dialog,if you like, about how you were
(23:58):
coping, how you were going tonavigate your next steps is, of
course, painting, and using yourhands, whether it's digital or
on canvas, is, of course,difficult. It causes you pain.
And so I'm interested in how youare using art to navigate pain,
(24:19):
whether it's mental or physicalpain, whilst at the same same
time it could cause you pain.
That's what it is sointriguing, Paula, because yes,
every time I draw with thatpain, but I think being able to
use that pen, especially nowwith my acrylic work, where I
(24:41):
just, like, pour paint onto thecanvas and just kind of go with
it. I think for me, being ableto capture that pain on the
canvas is empowering, and I think that I am on that
thought that I'm going toI'm going to distort the
(25:01):
illness reality. It keepsdistorting my reality, but I am
going to use the pain to distortthe reality, the illness
reality. And you know how it'strying to disempower me? And I
think that's what drives it. AndI think sometimes I've created
some of my best work throughthat pain.
(25:24):
Yeah, perhaps it's almost anauthenticity, you know, of the
pain driving the work. Perhapsthat's what drives what you
consider to be better work.
Yes, absolutely. it's that wholekind of and you know, when, if
I've overused my hands, theythey shake as well. So I how
(25:46):
they shake, especially with theacrylic paints I use that, you
know, some of the, some of thedots that are on the canvas,
it's actually because my handhas, you know, has been shaking,
and I'm like, okay, yes, that's,you know, and it takes a lot to
make that or create that piece.And I, what I would love for
(26:07):
people to get from that is that,you know, just for a moment, I
think, pause and connect and tryand see beyond what meets the
eye, because sometimes we justsee something for what it is,
but there's so much more goingon. And I think that, and a lot
of us, Paula, when you lookat me, I look well, and you
(26:29):
know, physically, you can'treally see whether there is
anyone any invisible illness islike that, whether it's mental
illness or physical illness orpain, because you, you know you
try and look your best, and youyou know, you try to be the best
you can be. And I thinksometimes people just see the
outward appearance as, oh,there's nothing wrong with you.
(26:53):
I think you raised an importantpoint about cultural definitions
or beliefs, if you like, aroundillness and pain. And this has
come up elsewhere in the series,which is really interesting when
we look at the experience ofhealth, ill health, pain, when
(27:14):
it's culturally rooted. And oneof the things I was interested
in when I was researching yourlife and work is I understand
you speak two languages, and onelanguage relates particularly to
Buddhist literature, and thatalerted me to perhaps your
(27:38):
having a different set ofperceptions or cultural beliefs
that that may have even helpedyou in your journey, if your
language has helped root you,perhaps in Buddhist
interpretations, I wondered if,if there might may be examples
(27:59):
of that.
Yes. Yes. Fascinating question.Paula, so I am a Buddhist, and I
practice the sort of theBuddhist, the philosophy of
Buddhism, let's say the secondlanguage, the language that I
speak is a Sinhala, which isderived from Sanskrit. And I am,
(28:19):
I was born and raised in SriLanka. So Sri Lanka is a
predominantly Buddhist country,and I grew up with the
philosophy of Buddhism and interms of the whole concept of
impermanence. And I think thatreally helped me in the sense
that, just like anything you'reif you're in pain, that pain is
(28:44):
not going to be permanent. Oryou're going through a very
stormy, horrible period, thatperiod, again is not going to be
permanent, just like you know,in most situations, are not
going to be lasting forever. AndI think that concept as well as
I think my perception of lifeand how I view things was very I
(29:09):
think being from that backgroundculture really helped in, in a
way, to kind of think, Okay,this has happened. I'm going to
look at this differently. Youknow, it happened for a reason.
And I think for me, this mightsound insane, but I think I
wouldn't be the person I am now,if it if this hadn't happened to
(29:31):
me, I wouldn't have found theresilience, the strength I had,
and also the way I look atthings now is so different to
what I was, 14, well, well, Iwas in my early days of, say,
going back 15 years, let's say Iwas someone completely
different. I was with blinkerson, you know, I was not, you
(29:55):
know, I was just moving on afast track. You know. And I was
only thinking of one thing, or,you know, I need to get to this
career, and that's it, whereaswhen something happened and life
paused completely or forced meto slow down, and literally,
it's not like going at, youknow, 120 miles an hour on the
(30:17):
motorway. Literally, you are at50 miles an hour or 40 miles an
hour, and you are actually ableto see what's around you. And
yes, it was not something greatto happen, but I think even in
the most ugliest of situations,something good can come out of
it. And I think that thepersonality, or the newer
(30:40):
version of who I am now is, Ithink, because of that struggle
and trying to find your way backand trying to come to terms
with, you know, how do things happen, bad things
happen. How do we move forward,why we are dealing with them?
And I think that is somethingthat I think coming from that
(31:03):
background helped.
Yeah, absolutely. I thinkraising impermanence is so
interesting because I think itrelates as well to how you talk
about acceptance in your book.And acceptance, of course, is
very core to mindfulnesspractice, which listeners may or
(31:24):
may not be involved with. Butit's an interesting concept.
It's difficult in thatacceptance can be perceived as a
form of disempowerment, if youlike, oh, I have to just accept
this, or I have to just get onwith it. Oh, I'm just lumbered
with this, whereas actually itcan function in very much the
opposite way. And I think thatperhaps what you were just
(31:47):
touching on is how you talkabout changing from "I" to illness
to finding a new "I", and, infact, acceptance is relating to
the wisdom of flux. Would yousay that's a fair interpretation
to make?
Spot on Paula? Spot on. No mansteps into the same river twice
(32:11):
for he is not the same personsix months ago and it's not the
same river six months ago. Yeah,that's not the correct saying,
but it's Heraclitus. Heraclitus saidthat, and that was, that was my
interpretation of it. But that'strue, isn't it? Because it's
that, it's that flux. Weare constantly in flux. And I
(32:32):
think who we were six months agoor three months ago, who we were
yesterday, you know, we aretrying to, I think we could all,
all of us could find a newer,better version of ourselves as
a process, yes, and I thinkthat is something that, whether
we have an illness or achallenging situation or we're
(32:52):
just facing, you know,everyday life, I think that all
of us can find a differentversion, or work towards finding
a better version than who wewere.
I'm interested in general withthis series in how the arts are
perhaps underestimated in termsof the significant role the arts
(33:18):
can play in terms of cultivatingcourage and curiosity, which I
think both relates, importantlyto wellbeing, to health and
wellbeing on many differentlevels, including, in fact,
societal health as well. And I'minterested thinking about that
(33:39):
in terms of another one of yourpoems in the book, The Face of
Courage, where you ask, what iscourage? And do you think that
that maybe is something that isborn out of flux, being able to
accept and understand what fluxis, and being able to embrace
(34:00):
the wisdom of flux?
Absolutely. I think all of us,we all have courage within us in
different levels. And I thinkthe courage that brings that
comes out of understanding whatflux is and understanding or
(34:22):
living through a certainchallenging experience. I think
perhaps a different type ofcourage, I think, and I think
that is something that we allhave. It is that we don't always
tap into that, or we are notgiven the opportunity to tap
into that. And I think thedifferent forms of courage, or
(34:43):
the faces of courage, we all, weall have it. We just don't
actually see it. That's what I'mtrying to say in that poem.
I think it's such an importantquestion to raise, which your
poem does you know? Youliterally ask, What is courage?
Because, of course, we so oftenassociate courage with heroics,
(35:05):
but actually vulnerability is socore to courage and how we face
certain challenges, however bigor small, everything is scaled
to the person experiencing thatchallenge. And I just felt it
was a really important qualityto acknowledge that in our own
(35:29):
recovery, self management ofhealthcare, it can take courage,
because, of course, so muchacceptance can be involved in
terms of losses, changes,whether that's the loss of
identity, whether it's the lossperhaps, of some physical
movement, for example. So itdoes take courage, I think, and
(35:53):
I think art helps us cultivatecourage, even if it's initially
through expression, throughhelping ourselves understand
what our interpretation is,particularly when it is complex.
It also, I believe, offers analternative language with
clinicians that both parties canrelate to on an equal footing. I
(36:20):
think it's a good example of howart, the use of art in our care,
can offer an equality in thatrelationship between clinician
and patients.
Absolutely. Paula, absolutely.But I think there is there's
a massive, massive gap betweenwhat a person is going through,
(36:44):
that lived experience that thehidden challenges they go
through, not just their physicalsymptoms, but just everyday
challenges that are unseen. Andthe on the other hand, the
clinicians understanding of whatit's like, that gap is there
because of that invisibility andusing art or putting a color and
(37:06):
shape to pain? If I ask you, ifI ask the listeners, you know,
we've all experienced pain insome shape or form, whether it's
a headache or a toothache orjust anxiety causing you stress,
that's pain, still. Can you puta color to it. Can you put a
shade to it right? And by doingso, by making that invisible
(37:29):
pain visible, are you able torelate to it better? Do you
perceive it better? You know? Doyou understand it better? And
similarly, that's for the persongoing through it similarly, for
the people looking after you, orpeople who are around you and
supporting you, could theyunderstand it better, because
(37:52):
it's now more tangible, youknow? So I think that is where
the concept of art or makingsomething that's invisible
visible. This is what mypainting looks like. This is
what my everyday looks like, notonly just showing that. I think
when someone looks at a piece ofart, there is a certain emotion
that it evokes. And I think weare all human, even clinicians,
(38:18):
even whether you're you know anyallied health professional.
We're all, you know, we're allhuman. We've got through
emotion. So if you know havingthose emotions, okay, this is
what it's like for this personto go through that it's not just
seeing it, but also tapping intothat emotion. So I think art can
certainly add that extra sensorydimension, not just visually,
(38:41):
but also, I think, you know, ittaps into different sensory
dimensions, I think, and gettingpeople to actually pause and
feel and connect.
This brings me to a quote thatyou use, that I particularly
loved to read. There's variousquotes that you refer to
throughout the book, and thiswas Vincent van Gogh. And the
(39:05):
quote is, "If you hear a voicewithin you say, you cannot paint,
then by all means, paint, andthat voice will be silenced." And
I felt that was such a beautifuland important statement, because
it speaks directly tomindfulness, to changing
(39:26):
negative thinking patterns, toaddressing who and how we have
relationships with the arts,that it should be a normal and
ordinary part of all of ourexperience, but particularly
when it comes to liberating ourown minds, whether that's how we
(39:48):
think, or whether it'sliberating ourselves from pain,
or whether it's liberating ourexpectations of the future.
Absolutely. Okay. I mean, that'sa very, I love that quote. I
mean, all the quotes that I'veused have been very personal to
me. I mean, art can reach youand teach you, and I think it's
(40:12):
something that is inspiring, andit can educate and empower all
at the same time. And this issomething very interesting. A
person, a participant in aresearch study, mentioned it was
a group of women who wereactually who all had chronic
illnesses, and they were drawingwhat it was like to live with
(40:35):
these chronic illnesses. Andwhen they were asked, one of the
participants said, Art is alifestyle coat hanger, which
really stayed with me, becauseit, of course, it is, and
especially for someone like me,it actually also it was not just
a tool to express what I wasgoing through and cope with what
I was going through or what I'mstill going through. It's also
(40:58):
it filled an occupational voidfor me.
So if we were to go to a pieceof your artwork in the book,
which very much stands out as astatement piece, it's called
Inner Turmoil. So for listeners,this is an image where you're
effectively caged as a patientwrapped wrapped in barbed wire.
(41:22):
There's no control. There's nosense of any liberation. It's
turmoil encaged. And I justfelt that there must be such a
significant contrast between whoyou were then in that image as a
(41:42):
patient to how you mightdescribe yourself as a patient
today that has had the fortuneto develop an art practice as
part of their self care.
Oh, my God, Paula, that is sucha, yeah, that's a brilliant
(42:02):
piece to bring up and and touchon and talk about then and now,
because I think at that momentin time, I felt, you know,
trapped, so trapped and lostand, you know, trapped behind
all those social expectations,being unable to move forward,
just being consumed and lostand, you know, not knowing, how
(42:26):
do I walk? How do I get back upto you know that in the last
10, years or so, let's say,when I've been able to use art
to defy being defined by theillness. And, you know, keep
moving forward with it. Youknow, publish a book and have
(42:49):
one of my pieces. Actually, Iwas one of my pieces, which is
also in the book, is was part ofa social justice art exhibit
during the Venice Biennale lastyear, and so, you know, and it
was just great to be suddenly,you know, move out there, you
know, and say, Hey, I'm actuallymoving forward with my life,
(43:13):
using art as a tool. But alsoI'm an artist as you know,
I'm now, confidently, I can sayI'm an artist, you know, 10, 15,
years ago, when things justhappened and I was using art, I
was like, Oh, I'm just usingart. You know, I wasn't, I
wasn't able to even say I'm anartist or call myself an artist.
But, you know, I can now callmyself an artist. And I think
(43:36):
you know that that journey hadwas very adventurous. From that
barbed wire trapped person tocoming out and saying, hey, you
know, I'm not the illness. I ama person. First, that was my
mantra, I made that mymantra in 2021 when I did a
(43:57):
walk, a 5k walking challenge forVasculatis UK to say, I'm not
the illness, I'm a person first.So I think, you know, I've come
a long way from that image,
absolutely and so perhaps thisis a good time to ask the series
question I never imagined. It'sa simple yes or no answer,
(44:21):
but in terms of your experience,can art save us?
I think art certainly gives usthe freedom to explore, expand
and express who we are, and inthat sense, it can certainly
save us from difficultsituations. It can save us from
(44:43):
challenging situations, and Ithink it can certainly save us
from having limited, narrowperspectives how we view things,
and certainly change a lot whenwe explore. Or and expand and
express. You know what it'slike, our inner self, the inner
(45:06):
dialog. Because a lot of us,Paula, how many of us, right at
the end of the day, or evenduring the day, how many times
do we take two minutes to sitand reflect? You know, like we
dwell on everything that's gonebad. Yeah, you know, I could
have done this, or I should havesaid this, you know, we but we
(45:28):
do not take the time to yes,this happened. Hey, next time,
I'll do it better. Or I did thiswell today, or say something
good about or think, you know,pick something that was
positive. We don't do that alot. I think a lot of us tend to
focus on the negative more thanthe positive. And I think, you
(45:49):
know, being able to expresssomething, have color, you know,
around you, and being able tokind of take five minutes, you
know, during your break, anddraw something or doodle, you
know, have a micro break andkind of put, put a color and
shape, and just, I think thatcan certainly help us to expand
(46:11):
or find different depths, to uschange our perspectives. And
maybe, you know, challenge whatwe are, what we or how we think.
And I think we don't challengeourselves enough, I feel, and I
think sometimes challenge how wethink or how we see things, or
we just sometimes accept certainthings and and I think it's
(46:33):
always, you know, important toquestion, why is this happening?
I need to question that all thetime. Why? Why? Why
do I use art? And, you know, andit's easy for me to say, oh,
gosh, yes, because art is XYZ.For me, art is a visual
language. And all the things youdescribed it, it has and it
(46:54):
helps me to transcend my pain,you know, pain, and it helps me
to put a positive spin onthings, and also it helps me to
inspire, educate and empowerothers that are going through
similar journeys. Being able totalk to you today and share what
I have gone through and share mythoughts and ideas, hopefully
(47:18):
will inspire others goingthrough similar situations, and
support them and feel thatthey're not alone, and there are
so many, it doesn't have to beit doesn't have to be visual
art. It could be cooking, itcould be gardening, it could be
dance music, anything that'screative, you know, that's an
outlet.
Yeah, absolutely, it really is alovely example and testimony to
(47:42):
how art as a tool can becomesuch a friend to us, and also an
important reminder of just theplayfulness and the joy of our
just fun doodling, but also allthe way through to significant
forms of expression. It'scertainly not about being judged
in terms of the art work that'sproduced. It's about the
(48:05):
relationship that we have withit. Unfortunately, there is a
status divide that existsbetween the arts and sciences,
but I'll close with a quote youuse that may benefit listeners
to consider their ownrelationship with the arts. And
that's Leonardo da Vinci. "Art isthe queen of all sciences."
(48:31):
Shanali, I really do want tosay thank you for your time and
for making time when you have somany various things to manage,
and from a health perspective,it really is appreciated. I will
signpost to the listeners yourwebsite so they can follow up,
discover the book and takeexamples, perhaps for their own
(48:52):
healthcare, or people they'resupporting with the messaging
that you share throughout thebook. And as ever, to the
listeners, thank you for joiningme, and please do remember share
this free to listen series tohelp make the arts all of ours.
Thank you so much. Shanali.
Thank you, Paula, thank you somuch for having me, and it was a
(49:14):
pleasure to speak to you.
I've really enjoyed it. Thankyou again. Likewise, likewise.
Take care, bye.
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