Part 5: Talladega Nights

On February 7^th, Stella Blue woke lucidly and with more energy than her first two days home.

‘Let’s do this!’

In the past that phrase would have been LOUD, with a smack of the hands while cheering on B-Wags and the Seahawk Legion of Boom, or her fellow ultimate players; now it was a muted plosive.

‘Let’s do this’, she said while pushing her hands into her bed and struggling to sit up.

We did the morning work … I wish I could remember the details now … maybe trying to pee in the bedside commode, taking some medicine, allowing her back to breathe by sitting upright for a spell. There may have been wiping her eyes with warm water, they were swollen and she wasn’t opening them much anymore, though we didn’t notice she was done opening them for good yet; we would have dropped some THC:CBD tincture on her tongue; did we change her shirt? No, we didn’t do that anymore, though this may have been one of the last times we ever tried.

She wanted a semblance of a routine, I think; a sign that life was continuing as…normal?

After our bustling, she sat at the edge of the bed, long legs hanging down, toes grazing the carpet, her feet still looking like they were used for walking though slightly puffier. She leaned against my left shoulder and settled; we sat there for twenty minutes, silently, pausing, to be still and breathe, as she did often now following any movement north of sitting up. Just leaning her head against my shoulder. So still for someone who moved so quickly and so constantly in her before life; truly, this was a sea-change, a world away from her normal. She lay in bed mostly, arms crossed; when she did move these days, it was in slow motion.

That energy she woke with was now gone.

She was tall for 14, and though slight, even when she was healthy, she was all the way to skin and bones this day … knees wider than any other part of legs … sweet as honey though, her mood lighter than yesterday.

She felt heavy-light against me. God, it felt so good...I could have stayed there for days.

Amy said, ‘I like this moment with you two’.

It was such a strange, perfect thing to say. Strange because she was calling attention to the moment and thus the oh-so-near end, because, why else would this have been such a likable moment?; perfect because Amy didn’t call out things that didn’t matter, or at least, with these words it made the moment more potent. I wouldn’t have noticed it maybe had she not spoken, wouldn’t be writing about it today. It was everything we could have asked for I suppose, while this terrifying runaway train toward end-of-life dragged us along: a pain-free minute, no beeping, nothing happening, just quiet. And her weight against me…mana from heaven.

Of course, what was happening inside Stella may not have felt so quiet to her … she was never without pain and nausea during this time, or was she?

I want to remember, that on this day the sun was shining; most likely through the blackout set up we had over the tall windows of her room, breaking through the cracks, pouring in the skylight in the hallway. But I couldn’t tell you for sure, it was February after all, when the sun arced low in the sky, dallying not. And if it was morning…. But I want to remember this because it helps me feel the contrast: the sun’s brightness with Stella’s vision; it helps me feel what it was like in that room. If she opened her eyes at all on February 7th we didn’t see it; but we still believed any light hurt her eyes, we hadn’t considered she wouldn’t open them anymore.

This was my mental state for the rest of the day:

‘It’s impossible.’

I kept wandering around the house this day saying that out loud. ‘It’s impossible. She’s not supposed to leave us. It’s impossible’.

Stella dying, my girl dying?

‘This is a dream. We’re going to wake up and gasp at the horrific, graphic realism of a dream only.’ Yet there she was, a shadow of herself laying in her bed in her dark room, arms crossed on her chest, barely breathing, eyes closed. Dying. It was true, she was dying and there was nothing we could do about it.

I’ve always been a positive person: I believe people and situations are ultimately nimble, mercurial, subject to will-power and the magic of hope; if we just turn our brains around and say ‘yes, it can be done.’ The power of yes, as my sister impresses upon the world, me too … my mother? is that where it comes from?

But I couldn’t make this ok; I could not fix this for myself or Amy or Charlotte and most of all Stella; I couldn’t yell at anyone to give her a magic pill; she couldn’t fly across the world and be cured by some new trial; there was no mistletoe cocktail to turn it all around … it was over.

And moreover, I could not prepare myself for the emotional upheaval moving unstoppably, towards us, by practicing, by preparing myself for this unnatural sequence. That’s what we do as actors, though. Amy had. A few years earlier Amy had done a play in which a woman loses her child…it was horrible for her. It was a play…it was nothing compared to this, but even then, imagining it night after night, she had reported trauma.

But for the real thing there’s no preparation … we only knew we were walking toward a cliff, and we knew we were going to walk right off the edge, and we couldn’t stop it.

And staggeringly, all that anxiety of that pregnant end time, when she was still alive, and it was NOT imaginable that she would actually leave, that wasn’t as bad as loss. Because then, despite all the facts, we still had her … I know, and I’m supposed to be getting bigger … hmmmm.

Right, the jar analogy, have you seen it?

Sometimes, beautiful graphic descriptions of indescribable emotions, while totally accurate, end up feeling very cruel. Yes, the above is true: most days though I don’t feel the breadth and space of the right jar.

From my notes this was an epic day; she felt and heard the love from her dear adult friends Selah and Joel, Makaela, Emily, Kathy, Stephanie, Jessica; Grandpa, Ava her cuz until they left for the airport. My brother was there, handling things (I think he bought us a Sonos set up) with Kaleo and the team, loving us that way…being helpful. Billie, always present, the secretary of Stella’s sickness, our friend and stable heart, who selflessly received and documented all the painful information for us to have when we needed it later…if … I have. She and I would read the notes and ask ourselves if we missed anything. She was my ally along with Amy when we felt like we needed to squeak the wheel.

My sister had to leave too early…I wish she’d been able to stay. I love her so, always helping, planning. Though, this sort of event leaves one’s planning hands tied; busy hands and brains are left outside the room of grief for the most part. Sitting in active grief is a do-nothing, feel-everything practice. The moments have to wash through you and there’s no action available. In the days to come there was more blood, active nursing; today was sitting and being in the middle of Stella’s imminent death.

Later, alone in bed with her she suddenly said:

‘We gotta finish watching the show’.  

‘Ok’ I said. I sat up. This felt like a time morph but I was playing along.

‘You know what I’m talking about, right?  Stranger Things’. 

‘Oh, yeah, OK, that sounds great, Stella, I love that show, let’s do that’.  

We were watching that a 2 weeks ago in the hospital and she kept dozing while we were watching it, presumably from all the hospital drugs and pressure.  That and the morphine. I’d given up on that entirely. Where was she in this moment that made her think she could do that?  She hadn’t opened her eyes in days…could she even?

But before I could think of what to say she was already off into another part of her new world behind closed eyes. The places she went now were deep, way beyond the places I could reach within myself.

All day we were blessed with visitors in the rec room sending love up through the floorboards to Stella’s bed above. This gathering began on the 5^th of February and continued until the day before she died 11 days from now.  Some friends quietly peeked in to be with her in her room and hug her maybe and others we only heard were there through Justin, going in and out of the lower room, or Ava with the keen eye, or Kristine who was getting ready to go. 

Later in the day, the Quenzies came up.

While gathering around the hushed, shrouded room, Stella suddenly said:

‘We’re watching Talladega Nights right now’.

It was like a shot of caffeine hit the room. Unanimous ‘yes’ was the response of course, and we all stood up to make it happen. For days we’d almost watched something together, but it would never happen, she’d pull out in the end, ‘too tired’. Also, her eyes: she hadn’t opened her eyes for more than five seconds in three days; we were only partially aware of this. (You tend to gloss over the strangest things at end-of-life…like blindness, for instance, low priority.) It just happened … one day, probably this day, after the movie, we understood she had opened her eyes for the last time days before … I have no idea when that was exactly. The tumor in her head was pushing forward, trying to get out; the skull was solid and there was brain in the way, so the cancer started finding the easiest path out, which happened to be pushing the soft orbs of her eyes out of the way … outward, out of the way.

Tonight, though, she was so fired up about ‘watching’ a movie; she even pressed her hands into the mattress and sat up!  We put my laptop on the medical table at the foot of her bed, assembled ourselves in view of the screen and jumped in. 

What a perfect movie she’d picked to share with her people. We all knew most of the words, we looked forward to various scenes (‘Chip, I’m gonna come at you like a spider monkey’, ‘you’re either first, or your last…’ ‘ what about 2nd, and 3rd’ and so on. Surrounded by her sister, sisters’ friend Hana, her mother, all lying in bed together, Maile next to her in a chair, Kaleo, Kathy, Joel and my brother in and out of the room, we watched the movie we all love so stupidly much. We didn’t laugh too much…but we vocalized pleasure often and talked over the actors constantly. And she smiled sometimes and the strength of her family/friends (FRAMILY, she loved calling it) buoyed her.  She actually had a few moments of pleasure I believe…I want to believe. 

After the movie ended, all of us in the room grew quiet; the adults were sitting in the feeling of our collective love; but Stella, she grew uncomfortable…she was annoyed because, blind, she probably thought we were looking at her sympathetically or being sad; she whispered to her sister that we were being weird.

‘Talk’, she whispered to her sister.

‘Don’t be weird,’ Charlotte leaned over and whispered to me. ‘You’re all staring.’

‘What do we want to talk about, folks?’ I said in full voice.

So we broke the stillness, and began moving about and then our larger family came in and talked and laughed and it was a magical night to cap a windy rainy day.

Later, after everyone was gone, sitting up under her own strength on the toilet by her bed, the light from the hallway came in the dark room and I could see her face in light for the first time in several days. Her eyes were much more swollen, and there was more blood.

Her face upturned, she said to me, ‘Yeah, I didn’t watch a wink of that movie, I can’t open my eyes right now’. She didn’t say, ‘anymore’…she said ‘right now’…I caught that turn of hope.

She then attempted to open them again; she tilted her head and screwed up her swollen face trying to will them open, trying to engage the once effortless system, but she couldn’t, the muscles wouldn’t respond. Were they stuck shut from the gore forming there? Were her eye muscles gone?

For the next ten minutes as she got back into her favorite position in bed and we moved the pillows about until just right, she talked about her state as a temporary one.

She said:

‘I want some food, red pepper. Vegan Margarita pizza’  

Amy and I turned to her; we were stunned.

‘Sure’, we obliged.

After Amy left the room to turn on the oven, she said, ‘I gotta eat so I can heal again’. 

 
My heart skipped a beat, but I quickly said ‘of course, we’ll turn your feeds on tonight’. 

Amy brought up the red pepper slices first. We placed them in her hands. She crunched the tip of a piece between her teeth and swallowed; it was startling to see because it had been so long, almost 8 months. ‘Yeah, ok’, she said, nodding her head.

Ten minutes later she picked up the warm piece of pizza from the plate in her lap and nibbled the very tip of it. ‘That tastes right’. She was like a standards manager, testing the food, making sure it was viable.

‘Ok I’m done for tonight. At least I started eating again.’

When I think about that moment now, I have to look away; I don’t know how I maintained my composure then. I was alone when she said it and I’m sure I wanted to break. ‘We’re so far past that point my girl…you’re never going to eat again’, I thought to myself… she’d forgotten she was dying; hopefully, dear god, hopefully only temporarily. 

‘She’s not eating ever again; she’s not healing ever again’, I thought as I stared at her, swollen orbs, hands back on her chest, lying perfectly still…a whisp of her former self.

Later in the night I told my brother what she’d said; he suggested that the night was so powerful for her that she went back in time a bit; the people, the familiar movie and the laughter made her forget. I think he’s spot on.

She was energized, full of an old, strong will to get back to the life before the sickness.

I learned during that time, from the little book by Barbara Karnes, there are a few markers one can look for at the very end of someone’s life. Their breathing changes, their bodily functions shift again and then, sometimes, there’s a need for a last meal, sometimes accompanied with a great deal of energy. Though I’d read about this before this night, and though all the signs were there, I knew this was not that. Her will to live was not tucked away yet. 

I wrote of that night: Amy and I will remember these singular events in our own way. We have an agenda for them: to be healing for us, to be healing for her, to be accurate, to be quiet, or in the case of forgetting she’s not able to heal, hurtful to her, hurtful for us. But we don’t know what they really felt like to Stella, those nights, and of course we never will. We can only guess what might have been going on in her heart and mind and hope that we were giving her comfort and relief in some way.

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St Francis Hospice of Dublin Grief guide

https://www.sfh.ie/sites/default/files/Finding%20Your%20Way%20Through%20Grief.pdf