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