in the beginning was the nerd that’s me
at 11 years old
the permed mullet was my mother’s idea
not mine it exasperated her that I
looked more like my dad and I didn’t
inherit her beauty so early on her
parenting motto became okay books not
looks that was the year she gave me my
first journal and told me to go
somewhere else anywhere else to write my
complaints down so she wouldn’t have to
hear them over the years
my journals became my best friends I
could tell them anything these days I’m
still an avid diarist with better hair
oh but now that I’m a grown-up my work
with journals is all about encouraging
the writing of others at the hospital
bedside many of whom have never seen
themselves as writers before I work with
people pen and paper because that’s
technology I can understand it doesn’t
matter what how much or when a patient I
works with wants to write it doesn’t
matter if they want to share their
writing with me or just enjoy some quiet
time alone with their journals but no
matter how someone uses it I believe it
arming a person with pen and paper can
help her slow down long enough to
separate what’s important from what’s
not with so many things spinning out of
our control especially when we’re sick
journals are a simple way to restore
agency dignity and privacy to a life now
that there’s no wrong way to keep a
journal but I think it’s a shame not to
try my mother encouraged my writing at
an early age partly because she wanted
me to shut up and stop whining please
but also because she had a story inside
her and she just couldn’t get it out the
poet Maya Angelou once said there is no
greater agony than burying an untold
story inside
you and I could see that this was so my
having played a witness to this agony
and forms a great deal of why I do what
I do my parents met in the very top of
Finland just before the Americans landed
on the moon my mom told me that story
again and again and one of my greatest
regrets in life is that I never really
learned Finnish well partly because
there was so much to examine about the
details of that crazy story but also to
learn more about this land she called
home but my mom did teach me one great
Finnish word that I get to teach to you
she slipped it to me like a secret a
secret you now know are you ready for it
okay
the word is thistle can you say it you
all speak Finnish beautifully now it’s
one of those funny little words that
doesn’t have an exact translation to our
language but roughly translated it means
guts or more like guts persistence in
the face of impossible odds but what
does that look like
this is attack by Edward istil 1899 the
heights of the Finnish Golden Age the
girl is Finland the two-headed bird is
Russia and that book they’re fighting
over is books the Finland’s book of
common law her very right to be Finland
persisted and eventually won out against
the impossible odds of her bigger
Russian neighbor a fact which informed
sis so to this day but now I look at
that painting and I see myself holding
on to my journal in the face of the
two-headed eagle of sickness and
suffering Sissel is something like a
prayer to me something that I say to
myself every day in my work don’t you
try to take my journal away from me I
feel honored to have the privilege of
putting journals and the arts with the
help of my esteemed colleagues to the
service of people who may never have had
time for such things before art is such
a small word and yet it carries a lot of
baggage in our culture today opera
the wrong way it’s loaded with
entitlement whereas illness is the equal
opportunity destroyer so we take nothing
for granted
we know that the ability to read a poem
we may put on the hospital wall is one
that many in our community may not share
folks already feel sick and scared they
don’t want to feel dumb too
but we also know that art offered with a
genuine sense of welcome can communicate
something beyond the limit of scientific
measure there is no medical code for the
human condition so much of our work
together as a team is about searching
for the simplest way in to offer an
approach to arts that’s down-to-earth
friendly and hopefully fun now the thing
about getting someone to write is first
you have to convince them that they have
something to say and to do that you need
to listen I listen all day to people who
haven’t been given much of an audience
before particularly up in our
psychiatric ward one of my biggest hits
up there is a little card game I’m a
called count to three I pass out these
handmade handwritten colorful cards with
we lists of threes on them three things
I love to wear three things I’m really
good at or even three things that just
really tick me off for some reason my
fellow staff love that last one anyone
can play if you’re manic three gives you
a limit if you’re depressed three
doesn’t seem too overwhelming to start
and because all of the prompts are
different the game encourages curiosity
instead of competition patients love it
and staff appreciate the way it helps
them discover something they may not
have realized about a patient before
imagine the insight a psychiatrist at
our table can get if say the very quiet
and composed person who draws the trio
three things I take out of my house if I
needed to evacuate in an emergency
answers without hesitation
our survival backpacks our Bible and our
gun that kind of unguarded and honest
response can illuminate a person’s
suffering and let us help better if we
listen I realized that my approach to
writing may seem unstudied
but I hope it doesn’t strike you as glib
in my experience even when facing
life-threatening illness working on a
human scale is vital the handmade
and the colorful or life-affirming and
they’re a total surprise in a hospital
with so much beige when I open with a
sense of humor it’s like checking for a
pulse if you laugh I know two things you
hear me and maybe you get me and we’ve
got to start somewhere because when I
walk into your hospital room it’s a
little bit like I’m stepping onto a
blank page I have no idea what your deal
is most of the time diagnosis prognosis
it’s not my role to know and you have
that innocence between us the fact that
we’re just two people in that moment
instead of two strangers at the
ever-moving line between the sick and
the well relieves us both of the
pressure to control the uncontrollable I
believe that a sense of humor is the
ability to tell what’s important from
what’s not and the minute that goes look
out in every TED talk there’s got to be
a sciency part so here’s mine studies
show that writing eases blood pressure
increases improved lung and liver
function eases pain increases the
development of healthy T lymphocytes
cells in your brain and helps you
remember what to get at the grocery
store it also gives you send a sense of
accomplishment when my mother wrote beer
cigarettes and half-and-half at the top
of every page of her smokey little
notebook it wasn’t because she’d ever
forget such happy essentials it was
because it gave her a sense of comfort
and control in hospitals where a little
can be said for comfort so much control
is out of your hands and you surrender
yourself absolutely to the goodwill of
the staff receiving a little bit of
roll back in the form of a journal is a
powerful gift
it says here’s something you can do now
how many times have you been told you
really should write your questions down
for that skinny little 15-minute
doctor’s visit but has anybody in the
medical profession actually given you
the stuff to do it giving a journal is
also empowering to a patient it says
here’s a way you can keep us accountable
so instead of asking why a hospital
should bother giving people the tools to
write maybe the question should be why
so many hospitals do not as far as the
art part goes what to write about it’s
never about the thing it’s about the
connection over the thing the freedom
through the thing to that end I learned
early on in my work in the cancer ward
that I had to be very careful about my
choice of words about my thing if I
walked into a room and said hey have you
ever kept a journal the patient could
grow quiet and wonder why oh is it like
time for me to start writing my memoirs
now oh my god I am so dying and they
didn’t want to tell me and the thing is
I don’t know that so sometimes I don’t
even call it a journal it’s funny how
the simplest word gets loaded the wrong
way depending on the room I’ll say hey
you know that feeling when you remember
exactly what you wanted to ask the
doctor or nurse is stuck if they’re out
of the room totally
here’s a place for you to write that
down how are you today and that last
word today is important it’s all we have
and it keeps us mortal and in the moment
our patients and their loved ones face
serious problems but still even in a
hospital where that today is everybody’s
worst day every day I’ve learned that
it’s okay to find a playful approach to
put words to the unspeakable so
sometimes in my cancer center writing
group I’ll even get people to use a word
from a foreign language in a sentence
there’s no risk of failure because
nobody knows what this word is and they
have never seen it before and what
my favorite words for this game is
Coomer spec that’s German for weight
gain
due to emotional eating literally
translated grief bacon the person who
drew this card wrote after the divorce
she became somewhat koomer spec now even
though the Germans have been said to
have a word for everything the truth is
that we all struggle to find the right
words at times I remember when my mom
got a diagnosis that went from bad to
worse mumps appeared all over her body
her leg her back the top of her head the
doctor called me at home to make sure
that I understood what was happening I’m
so sorry
she said but the cancer has exploded
then her pager went off
she made her apologies she had to take
another call the doctor called again the
next day to make sure that I understood
but this time she used different words
I’m so sorry
she said but the cancer has blossomed I
never saw flowers again the same way but
these days now that I work in a hospital
alongside staff working so hard to ease
pain and suffering I feel for that
doctor she was reaching for words that
work that would make everything hurt a
little less and in her sincere effort
you know she just tried a little too
hard and flowers were it ruined for me I
sincerely hope they are not ruined for
you I just see them now as I do all
words after that experience with a
healthy respect for their potential
words and language became even more
important to me when we planned my mom’s
trip home to Finland more than anything
she wanted to go and pick wild
blueberries in July now my mom raised me
to be an obsessive list maker just like
her so my journal was totally full of
notes of what to pack the bendy straws
we would need for my mom to be propped
up in bed to sip coffee
the portable oxygen concentrator we had
shipped from Wyoming the letter to TSA
from the doctor explaining why I was
carrying so much morphine three days
after we landed we were checking into a
hospital my family shock was obvious she
told him that she was sick but she had
left out the lung cancer part I reported
to the doctor a case of too much sisal
few of my mom’s nurses spoke any English
so I got out my journal and a 20 year
old phrase book and I tried to write my
questions down in Finnish a famously
impenetrable language my questions had
to sound like crazy talk to the
well-meaning staff piece death not
happen no pain myth and lie morphine
expensive then my mom had difficulty
talking and words stopped working for us
both I asked my mom if she’d like to see
the hospital chaplain
she drew my hands to her face I think
that meant yes but when the priest
walked in the room he looked so serious
you know like with the neck thing and my
mom looked so scared I thought maybe I’d
read her wrong but then he did something
absolutely brilliant he reached into his
bag and he pulled out two Bibles one in
Finnish one in English these were words
that could work we weren’t sure that she
was sure where she was anymore because
after a while all hospital rooms kind of
look the same so we turn to the same
verses and read them in tandem just to
cover all of our bases Hera cool em in
our walk up cine
you’re unknown who thought he took a
stola Lord hear my prayer I lie awake I
have become as a bird alone on a roof he
couldn’t speak English I couldn’t speak
Finnish and mom just couldn’t speak but
that man’s act of kindness put all three
of us together in the human condition
the verses don’t matter please friends
understand me on this he could have
pulled out two copies of the town hood
two copies of the Quran or two copies of
on the road by Jack Kerouac it’s never
about the thing right it’s about the
connection we make of ourselves through
the thing that man’s act of kindness
paid such honor to a trip that was so
important to this woman looking back
that trip was full of impossible odds
but my mom made her lists
she decided what was important to her
and she died in Finland with a blueberry
stain on her lips
when I took this job I wondered how I
could possibly be a service to the sick
if I couldn’t make them well I even
wondered what am I doing here but that
experience taught me that sometimes
working with the tools you have and
being present is more than enough so now
I do this with what I have today
journals having a journal is a powerful
way to take back some control in an
uncontrollable situation you may feel
completely surrendered to the staff but
your own hand across the page is a
tactile reminder of your own right to be
I wish you all health and wellness but I
see you in our Hospital please know when
I offer you a journal I’m not asking you
to write for me I’m asking you to write
for you thank you
[Applause]
at 11 years old
the permed mullet was my mother’s idea
not mine it exasperated her that I
looked more like my dad and I didn’t
inherit her beauty so early on her
parenting motto became okay books not
looks that was the year she gave me my
first journal and told me to go
somewhere else anywhere else to write my
complaints down so she wouldn’t have to
hear them over the years
my journals became my best friends I
could tell them anything these days I’m
still an avid diarist with better hair
oh but now that I’m a grown-up my work
with journals is all about encouraging
the writing of others at the hospital
bedside many of whom have never seen
themselves as writers before I work with
people pen and paper because that’s
technology I can understand it doesn’t
matter what how much or when a patient I
works with wants to write it doesn’t
matter if they want to share their
writing with me or just enjoy some quiet
time alone with their journals but no
matter how someone uses it I believe it
arming a person with pen and paper can
help her slow down long enough to
separate what’s important from what’s
not with so many things spinning out of
our control especially when we’re sick
journals are a simple way to restore
agency dignity and privacy to a life now
that there’s no wrong way to keep a
journal but I think it’s a shame not to
try my mother encouraged my writing at
an early age partly because she wanted
me to shut up and stop whining please
but also because she had a story inside
her and she just couldn’t get it out the
poet Maya Angelou once said there is no
greater agony than burying an untold
story inside
you and I could see that this was so my
having played a witness to this agony
and forms a great deal of why I do what
I do my parents met in the very top of
Finland just before the Americans landed
on the moon my mom told me that story
again and again and one of my greatest
regrets in life is that I never really
learned Finnish well partly because
there was so much to examine about the
details of that crazy story but also to
learn more about this land she called
home but my mom did teach me one great
Finnish word that I get to teach to you
she slipped it to me like a secret a
secret you now know are you ready for it
okay
the word is thistle can you say it you
all speak Finnish beautifully now it’s
one of those funny little words that
doesn’t have an exact translation to our
language but roughly translated it means
guts or more like guts persistence in
the face of impossible odds but what
does that look like
this is attack by Edward istil 1899 the
heights of the Finnish Golden Age the
girl is Finland the two-headed bird is
Russia and that book they’re fighting
over is books the Finland’s book of
common law her very right to be Finland
persisted and eventually won out against
the impossible odds of her bigger
Russian neighbor a fact which informed
sis so to this day but now I look at
that painting and I see myself holding
on to my journal in the face of the
two-headed eagle of sickness and
suffering Sissel is something like a
prayer to me something that I say to
myself every day in my work don’t you
try to take my journal away from me I
feel honored to have the privilege of
putting journals and the arts with the
help of my esteemed colleagues to the
service of people who may never have had
time for such things before art is such
a small word and yet it carries a lot of
baggage in our culture today opera
the wrong way it’s loaded with
entitlement whereas illness is the equal
opportunity destroyer so we take nothing
for granted
we know that the ability to read a poem
we may put on the hospital wall is one
that many in our community may not share
folks already feel sick and scared they
don’t want to feel dumb too
but we also know that art offered with a
genuine sense of welcome can communicate
something beyond the limit of scientific
measure there is no medical code for the
human condition so much of our work
together as a team is about searching
for the simplest way in to offer an
approach to arts that’s down-to-earth
friendly and hopefully fun now the thing
about getting someone to write is first
you have to convince them that they have
something to say and to do that you need
to listen I listen all day to people who
haven’t been given much of an audience
before particularly up in our
psychiatric ward one of my biggest hits
up there is a little card game I’m a
called count to three I pass out these
handmade handwritten colorful cards with
we lists of threes on them three things
I love to wear three things I’m really
good at or even three things that just
really tick me off for some reason my
fellow staff love that last one anyone
can play if you’re manic three gives you
a limit if you’re depressed three
doesn’t seem too overwhelming to start
and because all of the prompts are
different the game encourages curiosity
instead of competition patients love it
and staff appreciate the way it helps
them discover something they may not
have realized about a patient before
imagine the insight a psychiatrist at
our table can get if say the very quiet
and composed person who draws the trio
three things I take out of my house if I
needed to evacuate in an emergency
answers without hesitation
our survival backpacks our Bible and our
gun that kind of unguarded and honest
response can illuminate a person’s
suffering and let us help better if we
listen I realized that my approach to
writing may seem unstudied
but I hope it doesn’t strike you as glib
in my experience even when facing
life-threatening illness working on a
human scale is vital the handmade
and the colorful or life-affirming and
they’re a total surprise in a hospital
with so much beige when I open with a
sense of humor it’s like checking for a
pulse if you laugh I know two things you
hear me and maybe you get me and we’ve
got to start somewhere because when I
walk into your hospital room it’s a
little bit like I’m stepping onto a
blank page I have no idea what your deal
is most of the time diagnosis prognosis
it’s not my role to know and you have
that innocence between us the fact that
we’re just two people in that moment
instead of two strangers at the
ever-moving line between the sick and
the well relieves us both of the
pressure to control the uncontrollable I
believe that a sense of humor is the
ability to tell what’s important from
what’s not and the minute that goes look
out in every TED talk there’s got to be
a sciency part so here’s mine studies
show that writing eases blood pressure
increases improved lung and liver
function eases pain increases the
development of healthy T lymphocytes
cells in your brain and helps you
remember what to get at the grocery
store it also gives you send a sense of
accomplishment when my mother wrote beer
cigarettes and half-and-half at the top
of every page of her smokey little
notebook it wasn’t because she’d ever
forget such happy essentials it was
because it gave her a sense of comfort
and control in hospitals where a little
can be said for comfort so much control
is out of your hands and you surrender
yourself absolutely to the goodwill of
the staff receiving a little bit of
roll back in the form of a journal is a
powerful gift
it says here’s something you can do now
how many times have you been told you
really should write your questions down
for that skinny little 15-minute
doctor’s visit but has anybody in the
medical profession actually given you
the stuff to do it giving a journal is
also empowering to a patient it says
here’s a way you can keep us accountable
so instead of asking why a hospital
should bother giving people the tools to
write maybe the question should be why
so many hospitals do not as far as the
art part goes what to write about it’s
never about the thing it’s about the
connection over the thing the freedom
through the thing to that end I learned
early on in my work in the cancer ward
that I had to be very careful about my
choice of words about my thing if I
walked into a room and said hey have you
ever kept a journal the patient could
grow quiet and wonder why oh is it like
time for me to start writing my memoirs
now oh my god I am so dying and they
didn’t want to tell me and the thing is
I don’t know that so sometimes I don’t
even call it a journal it’s funny how
the simplest word gets loaded the wrong
way depending on the room I’ll say hey
you know that feeling when you remember
exactly what you wanted to ask the
doctor or nurse is stuck if they’re out
of the room totally
here’s a place for you to write that
down how are you today and that last
word today is important it’s all we have
and it keeps us mortal and in the moment
our patients and their loved ones face
serious problems but still even in a
hospital where that today is everybody’s
worst day every day I’ve learned that
it’s okay to find a playful approach to
put words to the unspeakable so
sometimes in my cancer center writing
group I’ll even get people to use a word
from a foreign language in a sentence
there’s no risk of failure because
nobody knows what this word is and they
have never seen it before and what
my favorite words for this game is
Coomer spec that’s German for weight
gain
due to emotional eating literally
translated grief bacon the person who
drew this card wrote after the divorce
she became somewhat koomer spec now even
though the Germans have been said to
have a word for everything the truth is
that we all struggle to find the right
words at times I remember when my mom
got a diagnosis that went from bad to
worse mumps appeared all over her body
her leg her back the top of her head the
doctor called me at home to make sure
that I understood what was happening I’m
so sorry
she said but the cancer has exploded
then her pager went off
she made her apologies she had to take
another call the doctor called again the
next day to make sure that I understood
but this time she used different words
I’m so sorry
she said but the cancer has blossomed I
never saw flowers again the same way but
these days now that I work in a hospital
alongside staff working so hard to ease
pain and suffering I feel for that
doctor she was reaching for words that
work that would make everything hurt a
little less and in her sincere effort
you know she just tried a little too
hard and flowers were it ruined for me I
sincerely hope they are not ruined for
you I just see them now as I do all
words after that experience with a
healthy respect for their potential
words and language became even more
important to me when we planned my mom’s
trip home to Finland more than anything
she wanted to go and pick wild
blueberries in July now my mom raised me
to be an obsessive list maker just like
her so my journal was totally full of
notes of what to pack the bendy straws
we would need for my mom to be propped
up in bed to sip coffee
the portable oxygen concentrator we had
shipped from Wyoming the letter to TSA
from the doctor explaining why I was
carrying so much morphine three days
after we landed we were checking into a
hospital my family shock was obvious she
told him that she was sick but she had
left out the lung cancer part I reported
to the doctor a case of too much sisal
few of my mom’s nurses spoke any English
so I got out my journal and a 20 year
old phrase book and I tried to write my
questions down in Finnish a famously
impenetrable language my questions had
to sound like crazy talk to the
well-meaning staff piece death not
happen no pain myth and lie morphine
expensive then my mom had difficulty
talking and words stopped working for us
both I asked my mom if she’d like to see
the hospital chaplain
she drew my hands to her face I think
that meant yes but when the priest
walked in the room he looked so serious
you know like with the neck thing and my
mom looked so scared I thought maybe I’d
read her wrong but then he did something
absolutely brilliant he reached into his
bag and he pulled out two Bibles one in
Finnish one in English these were words
that could work we weren’t sure that she
was sure where she was anymore because
after a while all hospital rooms kind of
look the same so we turn to the same
verses and read them in tandem just to
cover all of our bases Hera cool em in
our walk up cine
you’re unknown who thought he took a
stola Lord hear my prayer I lie awake I
have become as a bird alone on a roof he
couldn’t speak English I couldn’t speak
Finnish and mom just couldn’t speak but
that man’s act of kindness put all three
of us together in the human condition
the verses don’t matter please friends
understand me on this he could have
pulled out two copies of the town hood
two copies of the Quran or two copies of
on the road by Jack Kerouac it’s never
about the thing right it’s about the
connection we make of ourselves through
the thing that man’s act of kindness
paid such honor to a trip that was so
important to this woman looking back
that trip was full of impossible odds
but my mom made her lists
she decided what was important to her
and she died in Finland with a blueberry
stain on her lips
when I took this job I wondered how I
could possibly be a service to the sick
if I couldn’t make them well I even
wondered what am I doing here but that
experience taught me that sometimes
working with the tools you have and
being present is more than enough so now
I do this with what I have today
journals having a journal is a powerful
way to take back some control in an
uncontrollable situation you may feel
completely surrendered to the staff but
your own hand across the page is a
tactile reminder of your own right to be
I wish you all health and wellness but I
see you in our Hospital please know when
I offer you a journal I’m not asking you
to write for me I’m asking you to write
for you thank you
[Applause]
Please follow and like us: