Superhero: What My Dying Son Taught Me About Bravery

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hi

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y'all oh it's so good to be here um my

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name is JJ and I'm going to talk about

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storytelling because you know we humans

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are natural born

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storytellers it's how we teach it's how

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we record our history it's how we

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entertain I love thinking about stories

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because I'm a professional Storyteller

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I'm a TV producer and part of my

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experience when I was producing this

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series The Gentle art of Swedish death

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cleaning was witnessing how terrified

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people are to tell their stories around

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death and

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grief which struck me as odd after a

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while I mean how did it become so

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taboo I've come to learn that evidently

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we did used to be better about about

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telling our death stories because back

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in the day we died at home and at the

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very least we had to tell each other

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what to

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do but then the Industrial Revolution

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happened as did science and hospitals

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and we pushed death out of our parlors

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in into more sterile

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environments the whole process became

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colder and less human so naturally we

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decided not to talk about

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it well I am here to suggest that maybe

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we should

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I want to encourage us to tell our death

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stories for two reasons number one

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telling our death stories helps us

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process our own emotions our own grief

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and number two telling our death stories

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helps others by giving them a framework

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so they know what the heck to do when

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they are faced with death either their

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own or a loved

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ones now you do see see quite a bit of

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death in the movies and on TV it's just

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often not that realistic

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right even still seeing these stories on

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the screen helps us form a narrative

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around how things must

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work I mean for example how many scenes

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have there been about the moment someone

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finds out they have a terrible

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disease countless right so many dramatic

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interpretations of what it must feel

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like to hear the words you have

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cancer I think that's why when we

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actually experience something like that

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we say things like it was so weird I

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felt like I was in a movie

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right I know that's what we said the

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night we found out my son Mason had

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cancer that night was

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surreal my wife Stacy and I were LED

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down along hallway in the ER and into a

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tiny room filled with people in white

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coat coats and we sat there gripping

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each other as we learned that our

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9-year-old had

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leukemia that doctor actually looked me

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in the eye and said I'm so sorry but

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your life just

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changed everything slowed down you tell

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yourself this can't be happening to us

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this happens to other people not us it

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feels like I'm in a

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movie Our Lives did change uh we became

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a cancer

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family and Stacy and our youngest meline

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and I watched in horror as Mason lost

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his hair and his ability to walk and his

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normal

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childhood while in treatment for cancer

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Mason would have his 10th birthday and

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then his 11th and then there was another

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impossible

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conversation in the Autumn of

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2020 doctors sat Mason and Stacy and I

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down to tell us that there was nothing

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more to be done to SA save his

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life that day did not feel like a

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movie it did not feel

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surreal more like very very

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real I don't know if that's because we

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had become accustomed to terrible

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news or because it wasn't really a

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surprise or because I've never seen that

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dramatized it was a cold floor

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fluorescent lit room with my 11-year-old

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looking at me with pleading eyes as he

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started to cry saying Mama I'm not ready

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to die

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yet it was actual

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hell so how did we get through it how

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did we get through that

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time well by hearing stories of

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death stories that gave us handrails so

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that we knew how to help him while he

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died I'll tell you the story that helped

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Mason okay let me tell you a little bit

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about him first uh I'm his mom I'm

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totally biased I get it um but I can

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actually report he was an incredible kid

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um there are multiple accounts for

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example of him stopping down bullies and

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he was the kind of kid that could do

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that and then walk away with all parties

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respecting

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him in photographs he tended to hold his

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arms out wide there's actually a group

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classroom on a field trip photograph and

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Mason's the one standing there like this

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one

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kid before he was diagnosed when he was

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in the third grade uh there was a bunch

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of kids over at our house doing sidewalk

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chalk art you know they're doing stick

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figures and stars and what have you and

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Mason wrote in big chalk letters learn

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to

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love as a

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9-year-old now he also wrote fart but

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that was in a different

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section um I mean he was a real kid I

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don't mean to put him on too much of a

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pedestal he I mean picture me is like um

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a lesbian Homer Simpson if you will why

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you little you

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know he and I can go at it

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but he he was just what I mean to say is

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he was also very much a normal little

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boy he loved superheroes for example uh

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really he loved uh Marvel's The Avengers

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we had backpacks and action figures and

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lunch foxes and you name it Avenger

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stuff all over the house and one of our

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family's beloved uh Marvel actors was

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Chadwick Boseman also known as the Black

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Panther and uh a few months before Mason

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died we were coming home from yet

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another extended Hospital stay and we

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were getting him set up in his favorite

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place in the whole wide world the mom's

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bed and as we were doing it uh I was

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getting him set up and I glanced at my

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phone and I gasped and I said oh my God

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Chadwick Boseman

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died Mason lifted his head what my eyes

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quickly darted over the article to land

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on the word cancer I did not want to

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read this howd he die mama I put my

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phone in my pocket I started to shuffle

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around the room neatening Medical Supply

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Stacks I didn't look him in the eye oh

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honey he was he was sick sick with what

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cancer I built a cross between fear and

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anger and

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nausea I glanced back at my phone for

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the details ready to move past this

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topic uh colon cancer very different

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cancer than you have I don't want you to

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be

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worried Mason was not as flustered as I

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clearly was well read it

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Mama I did not want to read it nothing

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in me wanted to discuss this matter with

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my cancer filled little

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boy Mama read it

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fine I pulled my phone back up and I

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read Chadwick Boseman who played Black

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American icons Jackie Robinson and James

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Brown with searing intensity before

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inspiring audiences worldwide as the

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Regal Black Panther in Marvel's

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Blockbuster movie franchise died Friday

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of colon cancer he was 43 Boseman died

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at his home in the Los Angeles area with

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his wife and family by his side his

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publicist Nikki furer vonte told the

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Associated Press and the article went on

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and on to T Chadwick's really incredible

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life and accomplishments but all I could

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hear was the ringing in my ear of a

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cancer

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death I finished reading and I launched

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into this Speedy slip slide reassurance

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baby I know it is so sad that Chadwick

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Boseman died but honey that's a very

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different disease than you have that's

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colon cancer you have leukemia I don't

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want this to scare you Mason was quiet

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and there was a long pause and finally

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he said you can do

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that do what I said you can die at

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home I I moved closer to him honey what

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do you mean and he looked at me with his

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little Avenger fan eyes and he said I

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mean it said that he died at home they

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let you do that they let you die at

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home it was in that moment

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that I recognized how all powerful he

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thought medicine was he saw sickness and

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death from it as a medical permission of

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sorts to move to the next stage I saw

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the childhood innocence of how and why

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and what it is when someone dies how to

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explain

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this yes honey sometimes people die at

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home Mason was brimming with curiosity

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well how why why wouldn't you be in the

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hospital hospital if you're that

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sick okay so there was no escaping the

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conversation I curled up in bed next to

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him and I got to him into him and I said

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okay baby sometimes when someone's

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really sick and there's no more medicine

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that works they can choose to go on

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something called hospice care and they

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can go home or to a homelike environment

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and have a nurse help them with like

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pain meds and anything to keep them

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comfortable and they can just

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die Mason's eyes were

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wide he just nodded I could tell that he

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had gripped this idea no more

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conversation was

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needed so a few months later we

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were coming home from that terrible

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doctor's appointment and none of us

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really knowing what to say in the car

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ride home and we got him back to the

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house and set him up in the mom 's

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bed and I sat down and I looked at him

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for any sign of what to do

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next when he looked at me and he said

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Mama I want to die like Chadwick

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Boseman I said what he said I want to do

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it like Chadwick did I want to be at

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home with you and mommy and meline I

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don't want to go back to the

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hospital and that is how Mason made it

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clear that his intention was to have a

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home home

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death he died about a about a week later

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in the mom's bed with Stacy and me

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holding him telling him we loved him and

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we were proud of him and it was okay to

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go he had a beautiful

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death thanks to Chad with

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Boseman it took the story of the death

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of a superhero to give my boy the

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framework to Define his wishes

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there was also a story that helped me

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know how to parent my child through his

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death well before I was willing to admit

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it was inevitable we were at the

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hospital on yet another extended

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Hospital stay and I was scrolling

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through my phone an article popped up

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entitled three magical phrases to

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comfort a dying

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person I

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paused and then I clicked on

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it I could tell immediately it was

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written by a parent of a child with

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cancer

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leukemia my heart was in my

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throat it was from a Blog written by a

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mother named Jenny Harrington who was

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telling the story of the death of her

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8-year-old boy Yuan from

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leukemia and in that story she laid out

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plainly and beautifully how she

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navigated Yan's fear of his own death by

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using three

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phrases number one you will not be

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alone number two you will not feel

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pain and number three we will be

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okay Harrington repeated those three

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phrases to her son for the last two

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weeks of his life over and over again

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bringing him

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comfort with those three phrases

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Harrington became a super

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mom not just to youan but to

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me because sure enough the day would

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come that I needed those phrases with

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Mason and I used

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them and when I did it opened up the

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most incredible

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dialogue he and I were able to discuss

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things like

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whether he wanted to be buried or

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cremated what he wanted to do with his

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stuff and I was able to answer his

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questions like well what do you guys do

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on my

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birthday well we're going to light a

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candle and put it in a piece of

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cheesecake and sing to you of

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course he liked that

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answer it was the hardest convers of my

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life it was also the most

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beautiful I am so grateful that we had

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it and I am so grateful to that mother

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Jenny Harrington who told her story of

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death in a

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blog there are so many ways to tell your

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death story tell it to a willing family

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member tell it to a close friend tell it

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to a therapist tell it to a grief group

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write it in a blog privately write it in

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your own journal and reread it 10,000

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times if you have to just to understand

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it tell your death story as often as you

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need but here's where we need to

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start let's learn to

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listen we must first build our skills as

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an open and willing audience to such

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stories let's be brave enough to hear

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the

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story let's make it safe for them to

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tell it you don't have to offer up some

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way out of the pain for them you don't

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have to tell your own story just to show

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that you get it just listen it will help

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them and then when you are faced with

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death either your own or a loved

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ones you will be fortified by

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it thank you from the bottom of my heart

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for hearing

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mine