Why I photograph the quiet moments of grief and loss Caroline Catlin

Transcriber:

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 precious 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 worsened.

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 the 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 coat 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 are joy-filled
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’re the last ones ever taken.

The first call I got

was for an end-of-life session
for a three-year-old girl

who’d 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 too 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 and 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’ve 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
in 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.

You 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 ours to keep.

Thank you.