Encore: How to choose a movie when you might die before the end...?

Revisiting a popular post from a year ago. Plus I met the movie's screenwriter.

Hi All,

Honestly, I’m under the weather this week and fatigue has had me in its grips. My immune system has taken a hit since my last infusion and I’ve been running on fumes ever since. Any energy I have is mostly dedicated to my two year old.

I’ve got a beautiful new post coming Sunday, but I’m resending this classic from a year ago.

It’s Zach’s favorite post.

A time in the thick of my hospital stay, I’d just woken from an induced coma and off another ventilator. Things are looking quite scary, but everyone is glad to see me awake.

And I was well enough to choose my own movie.

Last year at Austin Film Fest, I was honored to meet the screenwriter of the movie I landed on in the ICU. He was incredibly gracious and kind.

Movies, even silly ones, can prove to be incredibly important in our lives… in unexpected ways.

Thanks for continuing this journey with me. TC

Thursday, February 10 - Day 17 - ICU

“How’s saving my life going?” I say weakly.

“You really scared us,” Dr. Kind said with the greatest relief. “I was in my car driving home when I got the alert and drove back. We even operated in your hospital room to make sure you weren’t having more abdominal bleeding.”

“That’s intense.”

“Yeah, it was intense.” He laughs as I see the most unusual sight, tears welling in his eyes. “We are very glad you’re still with us.”

I realize at this moment how hard all my doctors are working to keep me alive. They are truly invested. It isn’t casual for them. They are battling alongside me.

Astonishingly, I saw three more doctors cry at my bedside that day. Not open weeping, they’re still professionals. The kind of tears that pool in your eyes and give you a modest sniffle. They were truly moved to see me alive.

The toll this job must take is immense. I’m sure there’s some clinical distance they need to maintain for their sanity, but it was clear to me, I had a team of fighters.

Then the next unusual thing happened. Dr. Kind pulls down his mask.

“This is my face.” He smiles.

I hadn’t seen anyone’s full face in weeks. It’s striking to see someone’s full face. Especially after seeing someone every day for weeks. The eyes say a lot, but there’s still a wall. Oddly we fill in the gaps. It felt comforting to know what he looked like. To see a smile. There’s a lot of power in seeing someone smile.

“It’s a good face.”

“We will get you back to July,” he said, taking my hand.

“Thank you.” I squeezed his hand.

My mom sat with me, also relieved to see me awake and off the respirator. My skin was gray and I looked half dead. 

They let July visit in the afternoon and I held her in my weak arms, my hands white like a ghost on her warm body. A beautiful thriving little baby living her life without me. It occurred to me that I needed her more than she needed me, even now.

I wondered about my own mom sometimes. We lived far apart. Thousands of miles. I was always pretty independent. But now, a mom myself, I looked at her sitting in the chair across from me. What was she thinking about me? Did she have the same need?

She’s a private woman. I’m sure writing so much about the corners of our lives is challenging to read for her. I’m much more prone to being vulnerable in a public space. But my generation is built for that, with social media and what not. 

I feel a pained tug in my right chest. My nurse gets me warm packs as I’m unsure if it’s my pulmonary embolism or my postpartum breasts feeling sore and confused.

I ask my nurse to read me my chart, so I can be updated on everything that happened while I was unconscious but it’s so long he doesn’t even finish. It’s an overwhelming cascade of issues and I can’t begin to fathom he’s talking about me.

My exhausted mother says goodnight, but I’m too afraid to sleep. Sleep feels like surrender. Like the unknown. 

“What if I die in my sleep?”

The nurse, a sweet young guy who reminds me of someone I went to high school with, “I’ve got you. If I don’t look nervous, you shouldn’t be nervous.”

“I’ve made a lot of medical professionals look nervous.”

“The ICU is the safest place in the world,” he says proudly.

“Lots of people die in the safest place in the world,” I argue, though he has a point.

“Try and get some sleep,” he urges. 

The whirl of the dialysis machine echoes, “Live or die. Live or die. Live or die.”

Irritated, I turn on the TV. I don’t want to fall asleep. If I’m awake, I’m alive.

What do you choose to watch when it might be the last thing you ever see?

Puts a lot more pressure on the choice, that’s for sure. The TV options in the hospital can be rough; basic cable, some on-demand movies, and some religious options.

I start browsing the religious options but none of them resonate. I was hopeful for chanting, but they didn’t have any Buddhist options shockingly.  Then I look at the classic films. Surely an old-timey classic would be a solid choice. I turned on Casablanca, but it feels too depressing. I pivot to a comedy, the original Ocean’s Eleven, but the not-so-subtle misogyny was irritating. 

I look at the movies and I consider that if I start watching a movie and die midway through, how upsetting would that be, never knowing the end?

Scrolling, I find the perfect movie, Bill and Ted’s Excellent Adventure. If the last movie I ever see is a comedy starring a hot teenage Keanu Reeves, I’m comforted by that. 

“Strange things are afoot at the Circle K.” 

As Bill and Ted try to save the future, sleep sneaks up on me. I know it ends most excellently, dude.

I jolt awake again. Am I alive? I shudder. I have a new checklist upon waking. Yes, I’m alive. Check. Am I on a respirator? No, just a high flow. Check. Where am I? The ICU. What day is it? It’s night.

The movie is long over.  The dialysis machine continues to constantly urge me to “Live or die. Live or die. Live or die.”

The room is dark but shadows seem to sneakily move in the corners of my eyes.  

The clock stares at me in the moonless light. It’s thickly late. Day is miles away.

I feel my body greet Time, and Life, and Death like characters in a beautifully designed theatre play.

This night is a question mark. God is in the room. My ancestors and angels are all gathered. It’s crowded with fate.

Am I going to live or am I going to die, they ask each other?

I interrupt them forcefully. 

“I will not die. I WILL NOT DIE. NOT NOW. I must get home to my child. I will get home to her.”

The room seems to answer back with more questions. 

“It’s not my time. I’M NOT GOING ANYWHERE,” I exclaim forcefully. “Did you hear me, I’M NOT GOING ANYWHERE. YOU CAN’T TAKE ME YET.”

The shadows converse. What do they do with me? I’m not even pleading, I’m demanding.

God seems to be in the habit of taking new mothers. It’s been quite common to die in childbirth since the dawn of humanity. A woman’s curse frankly. Like here, you get to be the source of new life, but the universe will often make you pay for it. Mothers die all the time. Why should I get the choice?

But I cannot deny that in this room, it feels like a choice for me. I don’t believe everyone gets options though, unfortunately.

The shadows offer escape from pain. All this torture can end. I could join the celestial boundless… or I could stay and hurt and not know how I’ll survive. Or in what condition.

They explain to me that death isn’t leaving. I would get to stay tethered to those I love always. It’s not the end and it doesn’t hurt and I wouldn’t be alone.

But now, I’m unreasonable. “No! I have things to do. I’m not done yet. Don’t take me.”

My room was no longer in the corner of the world but superlunary. It was lifted into the cosmos and I landed in the grass in my grandparent’s backyard.

I laid on a beach towel in the shade of tall trees on a warm summer day. The pines swayed far above me like wise sage witches. I felt safe there, in a place I once knew well and could never return to. I got up and walked into the woods where a path led me through the trees. I passed through the canopy of a dogwood amidst the pines and out the path following my grandfather.

He was dressed monochromatically; green hat, green shirt, green pants. His white belt is the only pop of color otherwise. He packed his pipe as I followed him to a clearing of tall grass where a train track laid parallel to the path.

He’d walk a few paces and stop without talking to point out a bird’s nest, or a snail, or a purple wildflower growing off the path.

We didn’t talk. We just walked and looked. I was tiny, a child again.

I got a sense I could stay here, on this path with my grandfather. I also knew somehow I never left this path. He and I would always be here. 

But I needed to be with July. A piece of me was in the world and if a choice was being given to me, there was no question in my mind about where I needed to remain.

The sun dribbles into the dark room making the shadows fade. I had been up all night, choosing to stay alive.

My nurse checked on me as he said goodbye, “The staff all call you “the mama” in the ICU. Make it out of here. Keep fighting.”

I squeeze his hand and he goes out into the world.

A red-haired pixie appears in the doorway with a teacup on her head and I wonder if I’ve truly lost it.

“Good morning! I’m Kerry!”

“Hi Kerry. I’ve been hallucinating a tad, so I’d like to double check… is that a teacup on your head?”

“Yes!”

“Okay. Cool. Just checking,” I’m relieved but also, “why?”

“It’s kinda my thing. I started wearing funny things on my head for fun. Like cute little hats.”

“Love it, Kerry.”

She looks at me and takes me in a moment. 

“Your hair needs help.”

“Can you help me just cut it off?”

“Absolutely not! Do you have a brush?”

“No.” I had asked to borrow my mom’s small purse brush, but she wouldn’t part with it. To be fair, she’s had that little purse brush since I was child. The beloved purse brush has been in her bag longer than most of the major relationships in her life. So while I was deeply annoyed she wouldn’t leave it, I get it. And I think this passage will make her the most annoyed in this entire book. Sorry, mom. I love you. 

“We’ll have to make do with the comb then.”

Kerry proceeded to wash my hair and brush out my hair nest with a real shit plastic comb for two hours. Yes. Two hours.

Honestly, she deserves a Nobel Prize for the effort. I just laid there as she took each section and tugged at the locked knots til they were free. I should note I have a lot of hair. Made thicker by pregnancy.  Inch by inch, untangling thick bits of matted hair, Kerry became one of the top ten most wonderful people I’d ever met in my life. And she had a teacup on her head.

She took my hair and gave me two tight braids. I looked a bit like Dorothy, if Oz were a medical complex. 

“You seem tired.”

“I was too scared to sleep. And instead I was having a long debate with God.”

“That happens a lot here, I imagine. Get some rest.” She tucked me in like I was a child. And then she did the second most wonderful thing, she kept the doctors out instead of waking me. Nurses are not supposed to do this. But she put her foot down so I could finally sleep. 

It was the most glorious nap of my life. I remember waking up and suddenly feeling worlds better for the first time in weeks. Don’t underestimate the healing power in getting your hair done and a good nap.  Especially after a debate with the Universe.

And if you ever encounter an ICU nurse with a silly hat, tell her I’ll always love her.

What movie would you watch if it was the last movie you’d ever see?

If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo

If you’re new here, intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.