What photographing death taught me about life
[Music]
you know those
awkward icebreaker games when everyone
goes around
and answers something like what’s your
favorite superpower
when i was a kid i loved those games
i believed i had the perfect answer
people would start sharing and i would
wait
bouncing in my seat with excitement and
when it was my turn
i would proudly tell everyone the
superpower i want most of
all is to see people’s emotions in color
hovering in the air
around them wouldn’t it be cool if you
could see how happy a friend was to see
you
like they’d walk in and it would just
fill with the color yellow
or you could tell when a stranger needed
help you’d pass them on the street and
you’d see this long trail of blue behind
them
this was usually the moment where i
would look around at the many blank
faces telling me
yet again my cool superpower it hadn’t
landed well with my fellow fourth
graders
i was an awkward child
that hasn’t really changed and neither
has my deep appreciation for the
emotional world around me
or my desire to both witness and capture
the elusiveness of feelings
as i grew older i started paying
attention to the people and the stories
i came across
and i wrote down what i saw when writing
didn’t feel like enough
i learned photography and i began
documenting the moments that felt most
brushes to me
with a camera in hand i learned the art
of deciding what to include in the frame
and what to let blur into the background
i graduated high school i went to
college i studied a combination of
psychology and art
no shortage of feelings there i can
assure you
and then i got sick
not in a dramatic way i didn’t start
screaming in agony or
wake up unable to move or suddenly
forget how to speak
eventually all those things would happen
to some degree but
my path from wellness to illness was a
slow
persistent movement towards deep
sickness
i spent three years trying to identify
the cause
i met with numerous doctors and the
answer was always the same
there was nothing wrong with me over
and over despite my persistent low grade
fever and
joint pain and muscle aches i was told
go see a therapist practice more
self-care
i started to believe they were right
maybe nothing was wrong
every test that came back normal had me
falling
further into a hole of self-doubt
i started grad school hoping that i
would somehow get over this mysterious
illness and
i could return to life as it was before
still there was a small
unwavering part of me that knew
despite my symptoms not lining up with
anything that made sense
i knew something was wrong
eventually my cognitive symptoms were
sent brain fog and
memory loss and word finding and a
doctor agreed to order an mri
assuring me they didn’t think they’d
find anything concerning
instead they found a golf ball-sized
mass
in my right parietal lobe and just like
that
everything changed i called my parents
and i scheduled a date for brain surgery
and i dropped out of my grad program
they told me the tumor is probably
benign and with its removal that i’d
likely make a full recovery
i wish with all of my heart
i could tell you they were right i wish
this story ended here
six days after surgery the pathology
report came back
telling us the tumor was not benign it
was something called an anaplastic
astrocytoma
and while the surgery had been
successful and the tumor was gone
the microscopic cancerous cells it left
behind
remained impossible to remove
in other words i was officially
diagnosed with a rare
aggressive incurable brain cancer
not my best day my cancer is treatable
but it’s highly recurrent and when it
does recur it tends to return as
terminal
the timeline of when it’s unpredictable
some people get 15 years
some people just get one
my doctors explained to me that while
chemo and radiation would reduce the
likelihood of recurrence
every three months for the rest of my
life
i would need to return to the hospital
to check for new tumor growth
as i listened i met real grief
for the first time i thought of that
superpower i’d once wanted and
i imagined a deep dark purple filling
the room around us
a cloak of color that i knew was going
to stay with me
i’m 27 i thought to myself
how can this be happening
i was as determined as i was devastated
i
wanted to fight and recover and i wanted
as many years of life as possible
as i once again began to regain my
strength i started to pay attention to
the people and the stories around me
in the hospital i would push my walker
down the hallway and i would steal
glances into the rooms i’d passed and
i would see these tiny worlds contained
within them
sometimes i could feel joy so
big i just wanted to stop and stand in
it
other times the despair and the sadness
made me want to run
about three months after i left the
hospital i found out about an
organization that offers free photo
sessions to critically ill children and
their families
right away i called them i set up a
meeting and i signed up to volunteer
despite my radiation-induced fatigue and
my persistent
grief the idea of giving back in that
way
it lit a spark within me that had been
recently extinguished
for the first time in a while i felt
hope
it was as if a thin strand of gold
had begun to weave its way through my
code of grief
and the color was blending slowly into
something new
this organization offers their services
to children at any stage of serious
illness and
often they’re joyful and they’re
celebratory
other times a family asks for a
photographer to document a child
at the end of their life
sometimes these are the only
professional photos a family will ever
have of their child
often they are the last ones ever taken
the first call i got was for an end
end-of-life session
for a three-year-old girl who had been
very sick for a long time
she might pass while you’re there they
warned me are you sure you’re up for it
yes i told them completely unsure if i
was
now i could tell you
about this little girl’s death which
happened a few days after i photographed
her
i could but i’m not going to
instead i want to show you the little
girl’s mother
how she kissed and stroked the
hair of her daughter as she lay in that
two big hospital bed
even as the world as she knew it ended
forever
she was there to give love to her
daughter
i want you to see the dying girl’s older
brother how he cried but also how he
took his yellow airplane
and he flew it above her head
how i saw then a gesture of hope
colorful emotion orange and gold
i want to bring you with me into the
rooms
where the mothers hold their babies and
the families say goodbye
and i want to offer you the chance to
see in frames
to choose the point of focus and blur
the background
to see the details we so often miss the
moments
of grace and beauty we assume don’t
exist in those desperate places
in the hardest moments imaginable
those families they choose to love
despite him because of it all
i was not raised in religion and yet i
can tell you
whatever you believe those rooms are
holy
ground
when i was first diagnosed i was certain
grief would
swallow me whole and some days i still
think it might
i will never be at peace with the fact
i might not get to be a mother that i
might not see my brothers get married
that i probably won’t become old like
really old the kind of old everyone else
dreads and tries to fight against
i would have made a great old person
my grief it’s big
my fear of dying of leaving behind the
people i love
it’s enormous
and my work photographing death has not
erased that
death itself is rarely beautiful and the
images i capture reflect that too
the grief i have seen the immensity of
the loss
it’s brutal but when i walk into those
rooms with that camera
my job is to do what i always wanted to
do as a child
to capture the feeling and the
connection and the emotion
right there in front of me and what i’ve
learned
from all these families and from my own
wild terrain of grief is if i pay close
enough attention
i don’t need to see emotion and color
after all
it’s there and it’s visible in the
details
in the way our communities love each
other through anything
and everything and with my camera
i can capture the evidence of that
forever
and i can give it back to them to keep
right now my cancer is stable
i am so glad that for now
i get to keep living because
that’s the other side
my fear of dying the pain of loss
it’s only as strong as how much i love
this life
and the people in it with me
none of us are ever ready to say goodbye
to the ones we love
loss is devastating and try as we might
we can’t avoid that shattering grief
that follows in its wake
my guess is no matter who you are or
what you’ve experienced so far
you already knew this you too have
grieved
and all of us will grieve again and when
that happens we will have a right to be
angry we can mourn as loudly as we want
and we should
but when the worst happens we have a
choice
we don’t have to stay deep in the dark
bitterness of loss and
let that be the only thing that we see
or feel
because the one thing that’s as strong
and as powerful as our grief
is our love for those who we have lost
and that love will remain like thousands
of bright
colorful strands woven forever
through our cloak of grief beautiful and
awful side by side
and hours to keep
thank you