Documenting Her Wife’s Death on Social Media

[calming music]

There's a total awkwardness to death.

I think it's grown out of this idea

that death is to be fought.

We have this call in response.

Someone says they have cancer, and you say

You're strong. You're gonna beat this.

There is a stigma around talking about death

sharing pictures of death

because most people don't know what it would look like.

It's scary.

And Kathy said, Let's just put things out there.

Let's be fully transparent, and share this with people.

So we started posting on social media.

Kathy Brant was my wife for 18 years.

Kathy and I both worked in the field

of hospice and palliative care.

When we started going out, she said

I just wanna be clear, I don't wanna be a parent.

I just wanna date you.

And so I was like, oh, this will be very interesting

because I just brought a toddler into my life.

And she immediately ended up becoming

the most amazing partner.

[Kim, Filming] What are you doing, Kathy?

Pancakes, man.

Trying to get some man cakes going.

[Man] Yeah.

[Kim, Filming] Did you just call them, man cakes?

And also the most amazing mom.

[laughing]

Grayson just taught me within the 15-minute challenge time

he taught me the cup song.

[clapping and banging]

When Kathy realized she had advanced cancer

it was pretty devastating to know

that we had so little time.

We talked about how would we be sharing this information

with other people, and what did we want to share?

So before Kathy was sick, my relationship

with social media was sporadic.

I've never really gotten the hang of Twitter.

Kathy was very reserved.

She was a much more private person than I was.

She was like, Ugh, I gotta listen to everyone's story

about the people that they know

who all were cured with ovarian cancer.

Or, Everyone's gonna give me treatment advice.

Or, Everyone's gonna tell me, 'You're a fighter!

You can beat this!' And she was like

I'm so not looking forward to it.

And so I had said, There's no reason why

we can't tell people that you don't wanna hear those things.

Why can't we put that out there?

And so we posted that on Facebook

and got really positive responses from friends and family

who said, Wow, this helps us know how

to be helpful to you.

[Kim, Filming] I love you.

You're amazing.

You're a superstar. Why?

[Kim, Filming] Just 'cause you're awesome.

You always have a good sense of humor

and you're still trying to teach people.

So we began posting and sharing updates

and sharing pictures, and sharing videos

with the hope that people could see what it's really like.

This morning, I woke up early and did

a eight-mile hike while Kathy was asleep.

When I came home, she woke up and wanted to show people

her belly and her aspira drain.

[Kim, Filming] It's not bad looking.

[Kathy] Okay, good.

[Kim, Filming] It's a good-looking belly.

Anything else you wanna say other than

Hey, look at my belly?

[laughing]

Yeah, now that you've shown all

of your friends your belly, anything else?

I love you.

[Kim, Filming] You love me, or you love everybody

who sees the video?

Just me, right?

I primarily love you.

[Kim, Filming] I love you.

When you were diagnosed and you started dying

we talked about how different you and I are, right?

Right.

[Kim, Filming] And you were like, Sex is like, no.

Least interesting thing in the world.

Right?

Once you're dying.

Yeah, it's like

for me, at least

there's nothing there.

[Kim, Filming] Really?

I've told you this before, but if I were terminally ill

I would spend, like, probably a significant chunk

of everything single day of my life masturbating.

What is it we're trying to do right now?

Eat?

No.

Sleep?

No, the other one.

Magic-carpet ride?

No.

Poor choice, pee, right?

Mmm.

You have your Depends on, now I have Depends on.

Did you pee?

No, I'm waiting for you to pee.

Oh, that's very sweet of you.

If you pee, I will pee in my Depends.

I give you my word.

But you keep dosing off and forgetting

that you're supposed to be trying to pee.

And thinking that we're doing something else.

[laughing]

You lack focus, my friend.

Mmm hmm.

I knew that too much information is what would be helpful

to people because if we don't share that stuff

then that's why people think that end

of life is such a mystery.

[Kim, Filming] How are you feeling today?

The symptoms change daily.

[Kim, Filming] Yeah?

It's kinda hard.

[Kim, Filming] Like, things feel weird at different times?

Yeah.

I think what scares people about taking care

of a dying person is just the vulnerability.

It feels really raw when someone that you love

who was really independent needs that kind of care.

There was one person who had commented under a tweet

saying how infantilizing to be using the word, peeing.

And talking about an adult diaper.

This poor, vulnerable woman.

Kathy was mad because, she was like

I'm choosing what's going on Twitter.

Like, up until the final week, Kathy

was choosing everything.

And so, she said, I wanna record a video right now.

I want Kim to keep filming everything

and sharing it publicly.

And

that would make me happy.

[slow piano music]

I think that the tweets and then the GoFundMe

blog posts, together, helped Kathy process her own death

because they gave her a space to reflect.

She was not one to sit and talk about her feelings.

So to be able to write about it was good for her

but it was also really good for us.

And it was a way that she could share vulnerable thoughts

about herself and about dying with me

without saying them to me face-to-face.

She was clear with me that she wanted

the good and the bad posted.

So I tweeted about things that

probably didn't reflect well on me.

I said, There are days when I can't bear

the thought of her dying.

And then there are days where I'm like

Why doesn't she die?

Like, why is this taking so long?

August 3rd, I'm sharing this for non-medical people

who've never heard the beginnings of a death rattle.

The death rattle is Kathy Brant's.

The periodic, snoring, snorts are from Mitzy.

The video is dark and jumpy, but the sound is decent.

[heavy, rattling breathing]

Clinicians can't share stories like this

about their patients.

It wouldn't be ethical, it wouldn't be right.

And so, I thought it was important

for people to hear what that breathing change sounds like

and also to help destigmatize some of the sounds

that come along with dying.

[calming music]

Kathy died at 4:51 this morning.

I woke up around 3:30 a.m. when I noticed

her breathing changed.

I could tell she was close, so I talked softly

to her about her favorite beach and ocean waves

and cobalt-blue sea glass.

She sighed deeply, and that was it.

She was gone.

I pulled the covers up to tuck her in one last time

and then I brushed my teeth and took a shower.

No idea why, maybe I just wanted the day

to have something normal in it.

I don't know.

So this is a picture right after Kathy died.

People might judge you.

Like, what kind of monster would share a picture

of their loved one who had died?

In a culture were we don't share almost anything

around illness and death, the only way to counter that

is for some people to share a little bit more

than is probably appropriate.

The work that I had done with Kathy on Twitter

ended up having far more of an impact

than anything I had written in an academic journal.

More people had ended up connecting

with what I've shared on Twitter.

Two men from the funeral home pulled up in minivans.

One of them asked me if there were, quote

Any valuables other than your wife?

I had trouble answering because my throat felt so tight.

Grayson and I then came into the bedroom

to say a final goodbye to Kathy

before they drove her to the crematorium.

So I wanted all of you to know

that Kathy had a peaceful death

and your love and support is what made that possible.

Hey everybody, I just wanted to say thank you.

Sorry I'm so, like

weak-ish

and you guys have been the [slurring]

the most I've ever met in my lifetime.

So thank you.