Part 9: Stella’s legacy

Finding comfort

Stella Blue on an early morning walk with me, her father, circa 2008

Most of this was written three years ago; I’ve edited for clarity and probably shifted the truth by doing so. Memory in this form is maybe more an art than a science I suppose.

At 1:30am on February 13^th, Stella woke in distress; she rose slowly back toward consciousness fueled by deep and rampant pain.

It ‘hurts everywhere’ and ‘so nauseous’.

Amy and I are beyond exhausted, and it takes a while for us to get out of the distress reaction to do something useful. To our credit we did think clearly enough to use the Ben/reg we had ready and waiting on the medical table.

We administered the drugs efficiently. It didn’t help and Stella’s distress increased. 

We ended up giving her Ativan and working with her pained, groggy personage for a couple hours not knowing how to get her through. We moved about like ghosts in the early morning hours, useless and helpless and buried by feelings of hopelessness and failure.

At one point, with Amy downstairs and me laying to her right in the bed, Stella was experiencing full mode pain. I was leaning back, arms crossed, head resting on the wall … this pose I can remember clearly, if not for this moment, for many others. I was losing my patience and asked her to please let us help her and she told me to ‘go away’ and get mom.

I stood up and went to get Amy. She came in and I stepped out for a bit…who knows where I wandered in my house, or who I saw…it was all a nightmare at this point.

A few minutes later it was clear Amy was having a hard time as well and Stella called for Charlotte. Stella was not tracking her physical position on the bed and was getting frustrated.

At some point, maybe 20 minutes later, I came back into the room figuring time enough had passed. Stella was back in the in-between place … visiting her next life, moaning and moving her hands out in front of her. After a while Amy moved to the floor and lay down facing her and I sat back down next to our daughter with my back against the wall. I was craving a little softness and reconnection with her but she was far away. 

I started sobbing, uncontrollably. Instead of helping her I’d pissed her off … and what if it was the last thing she said to me: ‘go away’. I laid my head back and let go. I was unable to hold any form of parental composure.  Amy and I had agreed to keep it together around Stella as much as we could, not to let go and show our emotions; we didn’t want to add to her stress…we knew she’d be moved to take care of us if we did; but at that moment I was empty.

As soon as I started sobbing, Stella immediately came back to us, back from her new corridor of between here and the next place, back from floating half-way between worlds; she’d been whispering to unknown people…but suddenly she was here, turning her blind eyes toward me.

‘Oh Daddy, put your head in my lap.’  

I couldn’t think of anything more comforting than to be held by Stella Blue in this moment. I questioned whether I should say, ‘I’m ok Stella, it’s alright’, but instead I let her lead me … it’s what I wanted anyway.

Amy rested on her elbow on the floor and watched.  I got a pillow, adjusted my body and laid down on her lap.  With her right hand she found my head and began gently stroking my hair and with her left arm she cradled my shoulders, pulling me in with the little strength she had remaining; to me it was more powerful than a bear hug.

Then she said to me: ‘Are you perfectly comfortable?’

The rest of the day was a blur and I remember little from it. I wrote nothing about it at the time. What I do know:

-we spent a good deal of time wiping her eyes and face of the blood that was now flowing more freely

-her eye was covered most of the time by the moist towelettes that lasted 20 minutes before being saturated with blood

-she was thinner, white and turning a new color, further from us and, most alarming, her speech was starting to go

-Tallulah laid in bed with her, curled into her body holding her hand

-we spoke very little with her throughout the day

-In the evening we started seeing mental deviations along with a renewed surliness, or more specifically a 14-year-old saying ‘fuck you’ to her parents, but through a gurgling mouth that couldn’t much form words clearly and a brain that was losing its hold on our world…being eaten by that ... stuff in there? We didn’t know anything except that her body and mind were changing in a frightening new way.

-She was now bleeding even more copiously out of her left eye, down her cheek and on to her shirt.

By nightfall we saw a dip in her mood that leapt days of decline, a startling acceleration.

I can tell you now we should have known, but hope is powerful and we didn’t see anything but the pieces available to us that we could use to build our next solution.

Amy and I were all in the room with her and she couldn’t get comfortable on her bed. She began moving away from the headboard, instead trying to lean her body against the windows. We knew how to make her comfortable but all of a sudden she wouldn’t listen to us.

‘You’re going the wrong way sweet girl … your pillow’s over here.’ We tried guiding her but she brushed us away.

‘Stop tricking me.’

When we tried to tell her again where she was on the bed she didn’t understand and started arguing with us.

‘Why did you take me to the restaurant naked?’ And with that she burst into tears.

‘We’re not at a restaurant, you’re not naked…of course we would never do that to you…you’re in your bed, sweety’.  But she was just crying and waving us away. Amy and I stood near her bed while she felt around with her hands trying to locate her position on the bed, find herself in time…lost.

‘I want Charlotte.’

‘Yes, we’ll leave the room and get your sister’.

Charlotte didn’t hesitate and went in but, bless her, she was then put in an equally bad situation because Stella was still being belligerent and endangering herself and bleeding out of her eyes and dying of cancer and what was happening in this bedroom?

It felt almost clean 24 hours ago. Less than two hours before this moment she was comforting me on her lap.

When we left the hospital on February 4th, they told us death was imminent and we just needed to navigate her pain. Earlier on this day we doubled the morphine again and she swatted it away with her spirit and grit and ongoing fight for consciousness.

We finally got her settled and she seemed to regain her hold on what we think of as reality, she found her way on the bed and got her stuffies all around her; I think Spunky joined her; I can’t remember if she apologized or not but I wouldn’t have put it past her … I don’t remember what she said after the drama. I hope we told her we loved her a hundred more times.

At midnight, when things felt resolved for the night, after a rollercoaster of pain and fear and heartbreak, Amy and I stood in the room together and began to discuss Ativan which we both hated but that I was now pushing; it was a terrible option after what seemed like psychosis in Stella, but we also needed medical aid for her: morphine was not enough, oxy was no longer useful; so Amy and I begin to disagree, and we could feel an argument coming up at us quickly.

We chose Ativan, and, finally, Stella fell into a deep sleep.

Did we say goodnight?

Charlotte was gone, Amy and I tried to sleep. We awoke every two hours 2, 4 and 6 to give her Ativan.

Stella Blue, on one of our morning walks, down the sidewalk from the Q’s house, Seattle.

Feb 14^th, 2020

Amy and I awoke at 6:30 from our two spots in the room, me in the middle of the floor and Amy next to Stella.

Stella Blue, whose head had slightly turned away from her mother during her sleep, was not breathing as she had been. Something had shifted. There was blood coating her left cheek and pillow and neck and most of her shirt at her left shoulder, it had all come from the split in her left eye. The tumor had pushed from behind and folded her eye lid inside out and then it just broke.

We tried to wake her but it didn’t take us long to realize Stella was gone from us but for a gentle breathing. 

Her body was heavy, different, far away.  She was in a coma of some sort, though we were only guessing; a year full of guessing, hoping, worrying, fretting, trying all wrapped up into one horrifying result. It was the tumor, it smelled like the one from July and it looked like it when it started pushing through yesterday.  It was hard to spend time with and we got to work cleaning her up. 

I started crying hard as we moved about the room; Amy later told me I just seemed scared. Why now? All the work was done, she was at peace. I suppose I was worried she was not yet at peace. We got my mother and she helped us retrieve rags and towels to sop up the mess of blood that had soaked everything on her left side. The task helped hold the dreadful reality as far away as possible.

But touching her body was alarming; heavy head, heavy body no response to touch of any sort…she’s gone now, she’s gone, she’s gone I kept thinking. But Amy and I kept to the task of getting her cleaned, a gauze pad applied, her pillow situation changed and fixed up so her head was elevated. 

We tried to get her comfortable.  Perfectly comfortable.

We were ignoring that this was the end of her life, we ignored it for the next 4 days.

I can’t remember the next few hours...very clearly anyway. We were numb and in task phase and processing that Stella Blue Summer Altwies was dying, actually dying, there was no whisper of hope left.

Amy slept from 7:30 -10:00. I must have gone to talk to the team - Billie, Kaleo, Josh…everyone; Dad had arrived early in the morning. Mom was already up of course and helped us set up a cleaning station; I don’t remember how it went down. Just that we were suddenly in a new world of watching a Stella who was no longer responding, could not move or feel us touch her or hear us whisper that we loved her (or could she?) 

What followed was a day without new trauma. Friends came and went in the rec room and in her room.  Word spread below that she was in a coma. Josh and Kaleo were busy collecting dry ice and talking about how to handle her body…for when.

Talullah June laid on her bed for 3 hours at different times throughout the day, once long ways by the window and once curled up head-to-head holding Stella’s warm hand. She was still very warm. Maile, Emily, Anke her handwork teacher, Skye, Steph, Charlotte her best human friend/sister/mentor. Jasper, Joel, Kathy ... so many that loved her sat with her today. This moment they had with her/gave to her - her, inside a broken physical shell, this Stella ‘being’, who was just about to start the next occupation of some other being - they spoke to her all day. 

We had to address her bleeding left eye for much of the day though the bleeding was slowing. Rectangle gauze pad with calendula cream to keep it from sticking to the swollen orb and mess of tumor and ripped skin.  We got it down to a goodly practice. Whomever happened to be in the room with her helped; each pad lasted about 20 minutes until soaked through. 

Finally, we applied ice over the cover rag we used to block the sun and it stopped the bleeding rather quickly.  We wondered why we hadn’t done it sooner.

All day long she was still. All day long her pulse was 140. All day long she kept breathing and we assumed we’d be saying goodbye at night. 

We all slept long and hard and Stella still is.

Life after Stella continues to feel impossible in many ways and yet, of course, I wake up every day and try every day, just like every other human who manages to get up. While I’m stable in house and have a new ‘home’, while my connection to Charlotte continues to thrive and deepen and my new relationship continues to evolve and strengthen, I am personally unmoored. I worry about my lack of spiritual connection to everything these days, worry that I don’t live deeply enough, worry I can’t feel Stella enough, worry I’ll lose her someday.

I do find it interesting though, how free I was back then to speak of Stella at death as heading to another place, that she was simply taking leave of her body and going, where, I hadn’t much wondered, but that I “knew” was a true destination. I know I wrote that Neowise, a comet that passed us by a few years ago was surely being ridden by Stella, as if it was a stallion upon which she galloped across the sky. I know that I spoke of her body as a space suit that she left behind. I know that I WATCHED her as she died, blind, physically reach out in front of her, doing something with her hands; I attributed that labor with a different dimension, a place we living cannot see but that she was testing out, visiting, already joining in. I do believe our spirit, soul, call it what you will, lives beyond us. But where and in what form?

What do I know for sure? I know I cannot ‘see’ the past anymore the way I want. I know I cannot ‘see’ the current incarnation of Stella Blue in front of me, and I know I am not at ease yet with her death; I believe I will be someday. Something is missing yet in this long search for meaning.