Part 6: Paper thin

I went to buy Stella brand Montepulciano D’Abruzzo from my neighborhood market tonight. I always go in there looking for this brand of wine that I once found and now can’t stop looking for; they’re often out of it. The label has a drawing of a girl on a red Vespa with a long flowing scarf and a red helmet with a little gold star on it. The 20 or so bottles I’ve accumulated over the past two and a half years living on the corner of Bellevue, Bellevue and Bellevue litter my dining room floor; they’re now filled with water for watering my plants.

The guy behind the counter is always apologetic when he sees me find the shelf empty of the brand. There’s a white version he always reminds me but I don’t drink white. He once asked me why I like it and I told him just because I liked a Monte, it’s always cheap and I like the label. Then one day, after we’d spoken enough times I told him. ‘The real reason I buy this wine is one of my daughters is named Stella Blue.’ ‘Awwe awseome,’ he said in his odd crackly voice.

Today - it’s been a few months since I’ve found a bottle - I found the Monte on the shelf; it had a new label, the 2020 did at least; there were two 2018’s with the old label. The new one is dark and has a figure of a woman leaning back … not as interesting, not as Stella-like. I grabbed 3 bottles, one to drink and one to leave for my parents who’ll stay in this apartment for the next week.

The man behind the counter looked at me and asked me as I approached, ‘Does your daughter know she has a wine named after her?’

I paused and put the bottles down, I touched my phone and the machine beeped the purchase. This is that decision moment: do you say the words? or do you smooth the edges for this stranger? how do you feel tonight, Hans, about opening this opportunity?

I chose right … or I chose right for me at least; right because he felt it. I’m not sure if it was right for him. I’m sitting here an hour later still wondering if I should go back and check on him. The reason I’m wondering is this:

Sometimes people are nearer to grief than you expect. There’s no judgement from me if a person reacts neutrally to hearing the news that I’d lost a teenage daughter, I’m weathered-raw by now. Sometimes a person you love and respect shows little effect when you speak the difficult words. And then sometimes you get this guy:

I said after pausing and considering, ‘actually, my daughter Stella died 3 years ago. ‘He reacted like I smacked him in the face and it wasn’t fake; he took a step back from the force of … something, the words, but clearly not just my words or Stella’s name or whatever it is he could’ve thought about that fast, it was something that was already in him and was at the very surface, his armor was paper thin and I guess I caught him? ‘Hu …how, how did she …?’ he couldn’t say die. ‘Cancer’, I said.

He was truly hurt. He couldn’t close his mouth and he immediately started to cry, not loudly but in a shy way, trying to cover his tears. I was done with the exchange, my card had bipped and I was already moving away with my wine but he was frozen in speechless pain. I almost said ‘I’m sorry,’ but it felt foolish so I said three times, ‘I know,’ pause, wait, let him feel, ‘I know’ as I walked backwards out of the store, ‘I know’. I didn’t know what to do. ‘Thank you, thank you,’ I said as I left.

I’m such an jerk. I was careless. I should have been more careful. I felt like such an idiot. Why didn’t I stay and ask him if he was ok?

But truth: it made me love him immediately. It’s selfish, but I want him to feel Stella. He’ll never forget Stella now.

---

It’s February 8^th, 2020, and it’s taking her a long time to wake. I’m in the room with her alone. The sun might be shining but that doesn’t matter in here; what matters is Stella’s comfort and we’re focused, as usual, entirely on that.

She started stirring at about 8:30 with murmurings and subtle shifts. It’s 11:00 now. Amy and I have both had our coffee, prepped the bed flip for when she finally sits up; people are gathering in the rec room, Billie’s brought breakfast from Both Ways Café, Josh donuts from Café Vita (hold the ants), Kaleo is doing all the things Nona isn’t and Justin is puttering. Amy lies next to Stella right now dozing and loving. 

In her stirrings Stella said again this morning ‘I can’t open my eyes’, rubbed them and went back to sleep.

Defense. Brilliant. Deep native care-taking of herself.

Her eyes are more swollen for sure: buildup of fluid? What kind? Not likely infection, so more of the cancer itself?  We’re guessing.  No doctors around to tell us what’s happening, and, unbelievably, after a year of caring about the growth, after lamenting the size of the tumor…it doesn’t matter anymore; instead, only her comfort matters and leading her into a painless death.

I’ll say it again as a comment on the power of the passage of time: the growth of the cancer and where it is or what it is doesn’t rate anymore.  The fact that she has cancer in places the doctors never even mentioned as a possibility, an area of the body they refused to scan when I asked them to…none of that matters.

Teodoro, the soft-spoken hospice nurse, listened to her lungs yesterday and said most of her right lung was silent, solid - there’s no movement at all - and that she’s probably losing her left lung from the spread of the badness as well.  That makes sense; her breathing is more sporadic today. More deep huffs after long pauses. More pauses and longer too. 

He was the most comforting of the nurses that came once a day or every two days. He had a touch with us, the caretakers, and he noticed the gravity of our misery ; he looked for answers where he wasn’t supposed to try as he was not a doctor and I deeply appreciated the interest, we all did. I found myself looking at his behavior and facial expressions intently, trying to glean as much information about Stella’s state as I could.  It was all new, of course.  Who gets to learn how to nurse their own teenage daughter toward death prior to such an unexpected task?

She came and went in consciousness. Said good morning to Joel, Kaleo, Kathy and Justin in her quiet, crackly voice. Sweet, shredded love breathed from a mouth that sang happily two weeks earlier…for hours she would sing, making up songs while she played legos in the hallway, never imagining a time like this.

I walked down into the rec room just now and was overwhelmed by all the faces. It was packed, people on the floor, the couch full, everywhere. It was hot with breathing and murmuring and of course the teenagers whispering…that heats up any room. When I walked in, they stared at me.

‘Hi, I just wanted to come say hi and see you all; I’ll sit here for a minute.’ I sat on the couch next to someone. One friend stood up for a big hug…I didn’t really want to hug people right then. I said so but hugged them gently as I said, ‘Sorry I don’t really feel like hugging right now.’

Stella is getting a sendoff charged with barrels of love from her peers, their parents, our friends who’ve watched her grow and some who haven’t known her at all but love her through us. There was a knitting project happening; many quilt squares being made for a future blanket. Shelly Newcomer brought a small tile project: broken glass of various colors, Bananagrams letters, and two different bases and thin-set mortar to set the tiles on. Coats covered the bench near the door; teenagers lolled on the mattresses under the south windows flirting, sometimes giggling uncomfortably, gossiping and reeling with their own, private, unbearable emotions: there were candles burning and an altar of sorts under the large TV.

There was joy and love happening along with the somber happening, happening. It was a party of sorts with its own ecosystem. Somber but warm and comforting; hot and packed with the weightiness of Stella’s approaching death in the room above.

Food came in and got devoured or it wandered up the back steps into our kitchen where our team of friends handling the hopefully-once-in-a-lifetime affair discussed and planned our paused lives for us.

Mica and Adam stopped by a couple times; I wish I’d seen them more. They were running LCM (our construction company) alone, had been for 10 months … oof, collateral damage. It was a large task they were deep in a giant list of tasks every day and yet indefatigable.

Amy and Stella were alone while I was down in the rec room to stare at the big eyes moving over me and each other, and when I returned to the room she said Stella and she were talking, big talking.

She told me what they said later, when Stella was sleeping again.

‘It’s weird. Parts of my body just don’t work anymore,’ Stella said out of the blue.

‘Do you feel like you’re going to die?’

‘I don’t know, I just feel weird’.

They sat in silence. Then:

‘So much for graduation. I mean I don’t think I’ll get there’. 

Oh, that eternal hope.

I’m guessing here but I bet that last comment of Stella’s would have been a statement with a question implied…a search for confirmation from her mother, like: ‘Do you think I’ll get there?’, was what she meant.  But without the use of her eyes to dart a look across at her mother for facial news … for that sound reasoning she relied on, for the instinctive expression of her mother’s that might have said, ‘Oh that’s not necessarily true’, she would have been alone with her statement, wondering; ‘will I make it to graduation?’ But Stella couldn’t see her mother anymore, her eyes couldn’t find the answer, and so her mother must have taken it as a statement. As she must have.

She was working through the Big Reality. 

Later, to both of us as we sat alone, me writing on the bean bag, her mother most likely lying next to her:

‘Does my class know I’m gonna die?’

‘Yes,’ her mother said.

‘Good.’  

Good. Good because she wanted them to know, she’s taking care of business, checking things off that list, a list that starts with caring for other people.

Stella’s still not fully awake today, February 9^th, and it is now 2:30; I’ve been on the bean bag writing everything I can remember…I’m terrified of forgetting. So, I write.

I’m writing and feeling and thinking and nursing and I don’t know what Stella’s feeling and she knows that. I cannot do this for her. 

I wrote: 

She’s mostly surly with us so far today. Not terribly, but the reality is it’s not going away. And her eye hurts like heck because it’s so swollen and she can’t see any more to boot. She’s down low. I must be very careful what I say. She was thrilled though to know her classmates are gathering later…again; she always wants to know who’s down there.

Later: Tallulah, her childhood partner in crime, all grown but still delicate and deep-feeling, has been lying with her. She’s one of the few youngsters unafraid of the gore and the death approaching.  

Stella’s eye is bothering her…she touches it constantly to feel the swelling or to pick the scabs. On call, weekend nurse Shannon is looking into best options to soothe the pain and keep the blood from running into her ear. Dr Wu stopped by because she was in the neighborhood and had some good old-fashion suggestions: sit more upright to drain the fluid and use cold compresses. Charlotte came up with a good paper towel solution and with the always helpful, always present Emily, they created a station for wetting and changing the cool paper towel compresses.

Stella ended the day as she planned it the night before: watching a movie with her friends. Jasper, Maire and Maile all sat on her bed and watched ‘Good Boys’. Adults came in and out and the kids laughed, a little. Stella watched with her ears, (she’d seen it once with me) smiling seldom and bathing in her friend’s joy. We of course worried she was more miserable than happy but afterward we knew the answer. I wish I’d trusted myself and let the night linger with them. She wanted them to have stayed longer after the movie, after they left.

‘Did they have fun?  Was it awkward?’ she asked. 

‘No sweet girl, it wasn’t awkward at all, that was so good…’ and yes they had fun, they had a singular life moment. 

Her depression from the blindness is tough on her today and shows she’s fighting for life yet...of course, she’s a star and it’s hard to dim that light.

---

Later, sitting on the edge of the bed, attempting to go pee:

‘I’m dying and you can’t do anything about it.’

She didn’t pull the punch. She both knew I could take it and wanted to share the pain with me, the anger. She’s right. I’ve learned from my mother to fix things, most things emotional, social or physical … to MacGyver the world.

I can’t MacGyver this for Stella. 

Later that night she became a being of even more calm and stillness. With the morphine PCA at her fingertips and alone in her room, her best friends, healthy and safe, gone for the night, she settled into a deep meditation.  She was all inside herself except for sound and touch. I felt her going deeper, shifting down and away. With her eyes always closed, she began to look beyond the room when alone. She would reach out with her paper-thin hands and touch her chapped lips while her other hand lightly stroked her cat Spunky, ever present against her remaining warmth, nestled between her arm and her hip.

Then her hands would reach out into space, and she would dance with them. Pet something or pull something, ever so lightly.

It was haunting, beautiful and heartbreaking to watch. Light as wings on the wind her hands would move about, solving some unknown tasks above the bed. These were not random movements, they were delicate and specific: tying, pulling, caressing. Was she touching adored objects? Was she in school? Was she dreaming? Was she aware of it at all?

Her teacher Skye said, ‘She’s already leaving her body in a way.’

We hope she stays with us, the magic girl, for a few more days, a week maybe. But we also don’t want to punish her by keeping her awake if it’s not pleasurable. 

She dances with her hands in the other world. She moans in pain and then falls asleep. She whispers love to friends who come in.

She slept deep through the night of February 10th. Her mother next to her, myself at the foot of the bed curled around her feet.