Part 7: 'I’ll go when Stella’s ready’
Part 7: 'I’ll go when Stella’s ready’
Surrounded by youth
I walked out the front door of my apartment half asleep, going for my morning coffee and breakfast, and I immediately noticed the descending mood. It was both familiar and unnerving.
It went like this:
As soon as I exited the building, pushed my hands in my pockets and took my first steps to cross the street I noticed I was dragging my feet; I tried adjusting immediately, begging the air to wake me up and into my working frame of mind. But my feet wouldn’t listen … I moved slower and slower as I walked south on Bellevue Ave E. I knew I could push it, break into a run, but I didn’t have the will; a moody force that I would not ignore was pushing me to slow down, more, even more, until I was walking comically slow and yet walking at the pace I had to. I wanted to stop moving entirely and never move again. I wanted to, desperately. Just stop and stand still. Why not? What would happen? It would feel so right to stand still and let the world keep moving around me, keep standing in that spot and never move again. But I was afraid if I stopped, even as a trial run, I might NOT move again. I had to keep walking or I’d weld to the spot, lose my mind, crumble and never recover.
So I kept sliding slowly forward until the sharp tingle in my nose and eyes came and then tears … I could feel the pressure of a sob building; but I was in public, so I held it in. It wasn’t a Stella memory or a Stella thought that brought it on, so I thought … I wasn’t sure though.
I’m not ok yet, not ok still. I miss everything Stella even when I don’t know it.
I should have seen this coming … the slow-walking signal of grief: I woke up thinking about Monday Night Dinners. (I could and will someday write a chapter on the glorious, pedestrian celebration I once enjoyed … it was a great thing. It still happens but I only hear about it afterward.) It was - is - a community dinner that over time has morphed from inside winter nights to summer nights outside; from my old house on 84th St. to a friends’ house on Pilgrim; sometimes we went a year without one; other times we invited new friends to meet other new or old friends. I don’t attend anymore for complicated reasons, and I don’t know how to host them without the community around me that made them; and when I opened my eyes this morning I was worrying those complications and should have known it was the start to a solemn day.
So as I dragged myself toward Analog coffee, I tried to put a context to my state of mind. What’s happened in the month of June:
Charlotte graduated from the University of Washington on June 10th. She was still here, in Seattle at UW because of Stella; she could have gone anywhere but chose here. Her letter to the school that kicked her from wait list to enrolled student, was entirely about being a big sister and wanting to be in the city when Stella passed into teenagehood; she wanted to be available for council, to love the city they loved alike, together; she wanted her sister inspired by her. So she stayed, and then her sister left. Graduation for Charlotte was hard; despite the many events, cascades of family and all the ‘joy’ surrounding her, she confided in me recently that it was mostly just sadness, a culmination of years of work, hollowed by Stella’s absence.
Stella’s oldest friends, Maire, Maile and Talullah all graduated high school two weeks later. I got to see 2 of them (and Evelyn too) in one big event at Seattle Center on a hot Saturday; I got to hug them in their gowns and stand beside their glowing parents and grandparents. Spending time with Maile’s family, my second family, and my old High School friends and their children, after the ceremony, I didn’t feel sadness about Stella. Later I received texts from some of my friends gathered there describing how they felt Stella’s presence that night, and how they missed her. I didn’t feel the deficit exactly, more the celebration she would have felt for her friends; yes, I felt her, always do, but I wasn’t dipping toward the loss portion, yet. Maire had a Vashon Island graduation I didn’t get to see; but we needed to see each other before she left for college in Scotland, so Jessica and I whipped up a plan to meet; Jessica and I sat on a beach facing South with Maire and her brother Finn and chatted about the future.
I also ran into a newer, close friend of Stella’s, a Brightwater classmate, on a walk a few days after that. This child had a huge, emotional attachment to Stella, one of her life’s few, romantic tangles she had to carefully undo and still keep her friend; I hadn’t seen this child since the class gathered in Stella’s room days before she died. This 17 year old beamed at me in the parking lot where we saw each other, glowed with love for Stella. She wrote me a text later, expressing big teenage thoughts.
I turned into the small dog park and up toward Summit.
Floods of associations. So many markers of children growing up. Major milestones that would be, every one of them, a big ass party for Stella Blue.
And they were all happening simultaneously, all within a few weeks time of each other. I didn’t feel the depression of her absence during the events, I felt her joy for her friends …
But! and yet! … it caught up to me.
So that was it.
As my footfall slowly turned the earth and I tried not to burst into tears walking past strangers, these markers of joy for her peers swarmed into one idea and bubbled up from within; and I grabbed the sobs that wanted to burst out because I wasn’t done piecing it all together … there was one more thing.
Why was this matriculation so much? Is it an ending? No, and it isn’t, it is just another step in the living one’s life. These milestones would be constant going forward, each year, forever; the culmination of these college and high school careers wasn’t a magic end to anything for me as it relates to Stella, it was another reminder this was ongoing. I’d forgotten again. I’d been blindly assuming it was some sort of ending to a portion of the grief. It wasn’t, and that was the sadness pushing from within …
And then I saw a little girl standing ready for the school bus with her mother and it all washed clear.
When I passed her and resumed my pondering I thought: the Monday Night Dinner stressor was an ancillary grievance peeking through my everyday bereavement armor when I woke this morning, portending a much larger experience lying in wait; it seemed so big when I woke up, now I couldn’t care less.
By February 10th, 2020, not only her left eye but her right eye too was being pushed forward. Keeping her face and pillow from being saturated with blood was becoming a larger task. Also, unlike the earlier tumor growth, (when radiation reduced its size daily and we were yet hopeful of her survival) this time her eye was being completely enveloped; her lid was moving down from above forcing her eyes shut. And there was more: there seemed to be mass other than her lids coming from beneath the swelling.
Back in July her cancer began growing at a pace the doctors couldn’t keep up with. On July 5th, 2019, we learned the results from the recent MRI were neutral. A lead doctor on ARMS (alveolar rhabdomyosarcoma) stood in our small clinic room with our lead doctor, our resident and our besty NP whom we saw every week. The tall authority told us the tumor was the same size thus we should take it as a good sign; the chemo was most likely keeping it in check, if it wasn’t it would be much bigger.
What they meant by ‘the same size’ was this: the VAC chemo (vincristine, actinomycin D and cyclophosphamide) was probably working as well. That’s what they hoped, or rather what they were banking on…or they really knew Stella was a lost cause and they were just kicking the ball down the field; the tumor was actually .2cm bigger and it had moved down away from eye into her cheek. Whatever, it seemed a dubious prognosis, even with radiation set to start two weeks later, and we felt little comfort in the visit.
Three days after the appointment of ‘good news’, Stella coughed herself awake, spitting blood out of her mouth.
‘Mommy what’s happening?’ She was holding a handful of blood while we both woke, Amy from right next to her, myself wrapped around their feet at the foot of the bed; the alarm was quickly reduced as she was experiencing little pain.
We cleaned her up and soothed her with made up ideas: ‘your teeth have just moved’ and ‘it’s probably your body adjusting back now that your tumor is shrinking’.
I told her I wanted to look into her mouth. I remember in that moment how glad I was that I’d spent my life acting; I sent myself a trigger fast full body message to act like nothing was going on because, most definitely something terrible was going on.
A white, fleshy substance had grown down between her upper left molars and into her mouth. Her whole bite was already being reassembled from the pressure of the tumor on the roof of her mouth causing a complete realignment of her left, upper teeth; we’d known there was movement, she’d been complaining about not being able to chew and thought the blood was from one of her teeth being pushed out of position and then springing a leak. It was but now the cancer was growing into her mouth.
I will never forget the smell. Not sweet, morning, teenager breath, rather something stale and sweet, rotten … other.
I took a breath and moved about on the bed; got her more tissues, my mind reeling, but showing nothing. Amy sat next to her, rubbing her back, settling her down. She had just woken up from another half night of sleep…had it been a year of half nights of sleep?
I said calmly, ‘ok.’
I walked about a bit more, sure I was wrong, internally panicking, trying to hide it. They had just told us it was shrinking; they had just said they knew the VAC was working; this looked like it had spread out even more than they’d imagined…and grown.
‘I’m sorry, Stellbell, I need to look again with better light.’
‘Leave her alone,’ said her mother.
‘Daddy, it hurts to open.’
‘You don’t have to open any wider…I’ll get lower. Just one more time…I want to get a better look. I’m sorry, I’ll be quick.’
I looked inside her mouth again with my phone flashlight on brightest setting. A white mushroom of cancer was growing into her mouth from above. I was so stunned at what I saw I stopped breathing. I stood up and got off the bed. I eye-balled Amy who didn’t seem to believe the terror she saw in my eyes.
‘Ok, let’s get ready for clinic.’
What followed that day and the next couple days after was a complete abortion of plan A. We started Proton radiation therapy immediately and at an adjusted rate, a rate we now know was a life-saving measure of radiation. 61 greys…enough for a grown man with advanced sized tumors. All aimed at her face. Looking back at the first rushed meeting we’d had with our radiologist, we missed his quiet prognosis that the chances of survival were bad.
I wrote this on the day:
Today, February 10th, 2020, she wants to be here, ‘seeing’ her friends in her bedroom, doing her hair with them, singing softly along when we have singing which has become a thing; she wants to have her friends watch a movie with her and be with her FRAMILY and just be here with us for as long as she can: “But I don’t want to leave you guys.”
So, we help her to be with us longer, stay as conscious as we can get her while keeping her from pain, and navigate the next event when it comes … but we do it without feeding her anymore. There isn’t an alternative.
The morning was lazy, and she was generally in a moderate state of comfort.
Mid-day approached quickly. I was alone with her at one point, her mother taking a break and I leaned in to sing her favorite song, Sweet Baby James. Maybe it wasn’t her favorite song, but it was my favorite song for her. I started humming softly to get my crackly voice to relax, worked on my breathing a bit and prepared to breathe big feelings into the song that put her to sleep so many nights, the one that immediately relaxed my body, I was going to give it all my love.
I took a deep breath, as quietly as possible through my nose -
“Shh, no singing.”
She must have felt me silently laughing for five minutes after that. Oh children, they just nail you where it counts sometimes.
But not long after, another form of music drifted up into her room.
“What is that”, she asked me.
“I think Maire’s playing guitar in the front yard.” The front side windows overlooking the king’s table and the apricot tree was cracked.
“It’s so beautiful.”
She smiled, for the first time in weeks. It was genuine pleasure.
“They should come in”, she said.
Nothing could have made me happier in that moment than to bring new life into her room.
Maire and Maile proceeded to come into her room, get comfy and play music for 4 hours blending their beautiful voices and playing classic ballads to the total delight of Stella Blue. Maire Kennan, Mora is her stage name, has an album out now some of the songs inspired by the events of the next few days in Stella’s room along with her own adolescent experiences; Maile is becoming a skilled guitarist now as well. At the time they were friends singing their songs for the best audience anyone could ask for: a peer open to hearing the simplicity of the notes and the melodies but mostly the feeling, free of the adolescent jumble of style and fad… just pure music of love.
After singing Sweet Baby James as a duet to her, she said to them:
“That was the most beautiful thing I’ve ever heard.”
What Stella doesn’t know is that she sang too, I have a partial video of it. With her hand stroking her own head she began to let the words form on her lips and even sing the last chorus. The last singing she ever did came out in just a whisper.
I turned off the camera when she turned toward, afraid she’d see me videoing her, forgetting she was blind.
Waves of strange new emotions came out of us on these strange, last red days. Sometimes out of nowhere, sometimes because we were talking Truth with a friend. These two 15-year-old girls Maile and Maire singing and Maire playing guitar because Stella wanted their company and their music; her smile - she formed her lips into a smile - while they sang, could not have been a deeper show of pure pleasure coming through so much pain; at this moment the beauty of her smile and their deep-felt music just crushed me. Another wave came then as I sat there, trying to be invisible so the girls could feel free to be.
Later, the girls still in the room, whispering together as we did in that room, the music done but for Maire plucking her guitar, I was lying next to Stella and she said this, loud enough for us all to hear:
“I’ve got about a week; do you think I’ll live a week?”
“I don’t know’, I said, ‘Only you do.”
“I don’t know. I’ll go when Stella’s ready.”
Stella is finding a calmness today. The sounds coming from below in the rec room are a story, a soundscape of its own burrowing deep into her ... I’m guessing that of course.
She’ll suddenly come out of a reverie/memory/looking-at-the-other-side moment and say, “Who’s down there?” Then we send a spy down to see just which 8th graders are here because she wants to know and frame the picture for herself. She’s afraid to see them though and I wish I knew why…I guess I know why; it seems, though, that the class children, certain people ALL of us are being grouped by her. As she starts to pull away from us, as she prepares for the other side, the people in her life become a deeper sensation/feeling/memory while becoming less individualized ... surely I’m getting beyond my understanding now ... pure opinion, but it kind of looks like that from my POV 6” from her.
I stare at her face, holding her right upper arm. Perfect stillness and slow breathing. She breathes maybe five times a minute, but her heart is beating like a running rabbit. 5-6 breaths a minute, 140 heart beats a minute.
Marie, Amy’s sister from Vancouver, arrived tonight. Stella was happy to hear her voice. She has stayed close to us since arrival, sitting at the back of the room, quietly watching.
When nighttime arrived, we gathered again in her room, with the girls up front near and around her bed, Amy, Charlotte next to her and I curled around her feet, and the other adults at the back of the room.
Charlotte put on a Taylor Swift song and Maire, Maile, Emily the Good and Charlotte sang while Stella mouthed the words with them.
The night ended with a long sing along of Beatles music. Stella hugged her friends and family goodnight.
“See you in the morning.”
Love you, Hans.
thank you for so generously sharing these memories