GRIEVER'S DOSSIER // "to carry around love for people everyday, to want them to win, to act with that in mind"

~ with Hans Altwies

This is the third in our GRIEVER’s DOSSIER series—an ongoing set of Q and As meant to capture and share the tone, tenor, circumstances, and subjects of death and loss and how we live with them. What I’ve found in my grief work and in conversations with others is that what many (but not all) of us want is to hear from others like us. Not necessarily for advice or navigation, but simply for the abstract comfort in knowing that this—this grief, this life—is simply what is. That it’s as much about life as anything else.

I search every platform I’m on for “grief,” “death,” and “end of life;” in part it’s curiosity, in part it’s reseach, in part it’s community. Podcast apps, Instagram, Are.na, Letterboxd. Even Depop. And definitely Substack—which is how I found Hans Altwies’ Grieving Like a Dad. Hans writes about grief and parenting; of life before and after the death of his young daughter. In a reflection on his about page, he says it all: “I started searching for straight reports of the ordeal, hoping to catch a glimpse of what life was possibly going to look like afterward [… ] I didn’t find what I was looking for [...] I didn’t find peers sharing their thoughts, personal and raw.” This desire to share and to be shared with is why Hans writes his Substack, so I sent him a note about doing this interview—and research turned into something more like community.

WHO ARE YOU GRIEVING?
I am, and I will be so for the rest of my days, grieving my little girl, my youngest of two daughters, Stella Blue Summer Altwies. This sweet peach of a person rocked life for 14 ½ years here in Seattle, following the lead of her favorite person, her sister Charlotte. Positive, energetic, loud, sweet as pie, constantly singing…unless buried in an Archie comic or building a lego world, Stella was impossible not to love because it was impossible for her not to love everyone she ever met. It was her superpower.

She died in her bed, in the home she adored, a floor above where she was born, of complications from cancer, with her mother and father at her side and multitudes of loved ones in the rooms next to and below hers. 

WHAT’S ONE OF YOUR FAVORITE MEMORIES OF STELLA?
This might be a hard one. My memory is kind of blown up and I’ve conflated videos and photos that I’ve buried myself in since she died. But, I’d have to say it was this: She was playing in a 5 v 5 ultimate game with her fellow 5th and 6th graders at Bright Water Waldorf School. Being one of the few girls on the team (2 girls, 3 boys on the field at all times) she’d played the whole game. It was raining. They were losing, she was exhausted and when the second half started she picked herself up and started screaming, “Let’s do this!! Come on! Let’s go!!’ and basically willed her teammates out of a lull and into a sort of frenzy … Berzerker I think it’s called … she just went insane for about a half hour. It was hilarious. And it all started with her, after losing a point at the end of the first half, lying on the ground and shouting louder and with more energy than anyone should yell anything, ‘I’M SO TIRED!”  I think they lost by a point…but it was an awesome display.

Ok, one other one: It was March 2019. The cancer was already growing rapidly in her left maxillary (we didn’t know at the time) and it caused a consistent nosebleed. She was playing another ultimate game (hmmm, two ultimate memories…). Her team scored a point, and suddenly she was running straight at me. “Tissue!!” She threw a bloody tissue at my feet, planted her hand on my chest, with the other dug a clean one out of my pocket where she knew there’d be a stack and sprinted back onto the field, yelling to her teammates and wiping the soon-to-be-diagnosed ‘tumor juice’ as it dripped down her upper lip. 

Nope it’s this…use this one: The night before she went unresponsive (we think she had an aneurism…we’ll never know), Feb 13th, 2020, was rough. She was starting to slip away mentally, she’d go in and out of being ‘here’. She was blind, her tumor was pushing her eyes forward and there was constant blood coming out, and her lungs were dying and she was dealing with a lot of pain. We’d had a tough night; for the first time, about an hour prior, she started hallucinating. Later, when all things settled down, I started weeping in bed next to her. She came out of her other place instantly, back from the other side she’d started visiting that we couldn’t see. She turned toward me, put up her arms and found me and said, “Oh daddy, put your head in my lap,” and helped me do just that. She put one hand on my shoulder and one on my head and soothed me. Then she said, “Are you perfectly comfortable?”

WHAT’S YOUR FAVORITE THING ABOUT STELLA’S LIFE?
SO many things … sorry, not your exact question…but there was so much to love about her life.  Her joy, her consistent joy. That and her love of her fellow man/woman/child. Her sister’s love; she loved the shit out of her, crafted her college life around being near her … had decided in 9th grade she’d go to school here in Seattle somehow (graduating UW in June) to be with Stella during her teenage years. Her Waldorf teacher said to us at a parent/teacher conference once (not verbatim),  “If I can’t figure out how to help a student, I sit them next to Stella; she just takes them under her wing and straightens them out.”

WHAT IS YOUR CURRENT STATE OF MIND IN TERMS OF YOUR GRIEF?
It’s not good. It’s not so much sadness as it is dysfunction: I feel like I’m just broken. The sadness was total early on. Then my wife and I separated … we’d been in trouble for years prior. I wrote a lot, thought I was finding meaning, still write. But now it’s a camouflaged experience … grief. I’m impatient, forgetful, easily distressed; my mind shoots around erratically and I can’t really control it. I feel like a crappy version of myself. I can’t see her, she’s fading from the senses I trust most, the only ones I know really: touch, smell, sight and hearing… useless … I don’t have a strong memory, never have, so I’m falling and there’s nothing of me to grab onto. And I say this knowing I’m very fortunate, my life is good, I have safety and a strong, solid love in my life … I’m so lucky. 

I started writing when she was given her terminal prognosis in February of 2020 so that I would remember as much as possible. Two years later I’m unable to feel her easily, you know, like, “Hey Stella … what should I do here?” I constantly see/hear/do things I think she’d love, she’s in me … she’s always there. But, it's a struggle to feel her in the way I want, see images of her. If I do it doesn’t happen without agonizing pain; if I let her in, or if I go to her, it’s crushing. I keep waiting for the turn, when I can let her joy lift me … it’s frustrating, and I feel like I’m doing something wrong … She was my girl, we were such pals, I knew what she was thinking and she knew it and loved me back. We were so so similar. I soothe myself by saying, “she’s in you, just be happy and you’ll be with her,” and yet its’ fantastically more complicated than that.

DOES DEATH HAVE A GIFT? DOES GRIEF? WHEN THINKING ABOUT STELLA’S DEATH AND THE EXPERIENCE OF YOUR GRIEF, WHAT DO YOU KNOW, SEE, FEEL, OR EXPERIENCE NOW THAT YOU DIDN’T OR COULDN’T BEFORE?
I know so much more about the people of this world than I did before Stella’s untimely, ridiculous, unbearable death. I was blissed out but clueless before; now I can be more patient with strangers, my family; there’s a whole world of compassion and empathy to hold for humanity now, post Stella on earth, that I couldn’t begin to imagine before; I thought I did, I’ve always been a nice person … but I had no idea what people were holding. And I imagine I’ve learned more than I know … even as I’m currently in a world of hurt. 

A concrete gift (I hope…I might be terrible at it…but I’m driven) I’ve started down the road of Hospice Volunteerism. I discovered I had to do this soon after she died … it is a calling I’m heading straight for with as much enthusiasm as anything I’ve done before. I’m convinced the most knowledge I’ll gain in this life will be through being with the dying or talking to those caregivers grieving and helping the dying. Death is, as my ex-wife called it, ‘reorganization,’ not an end; it is a magic time. We’re so crazy to be obsessed only with the world in front of our noses when there’s a vast All Place out there to revel in … but it’s not easily won. And, I say this even as I’m stuck in a vast, uncomfortable grieving, a grieving that has no consistency nor ease in site.

WHAT DO YOU THINK STELLA WOULD HAVE SAID WAS HER LEGACY? WHAT WOULD SHE HAVE SAID ABOUT LEGACY IN GENERAL, AND THE NOTION OF THINKING ABOUT ONE’S LIFE THAT WAY?
I think this question for a 14 year old is so interesting. Who knows? She said, the moment after we told her she wouldn’t make it, that she was dying, within a month or sooner, she said, “I just don’t want to leave you guys.” She said this to me, her sister and her mother in her hospital room three weeks before she died. I know it’s a word that gets hurled around loosely but: Love … it ain’t a bad thing to carry around love for people everyday, to want them to win, to act with that in mind. For me that’s her legacy, she did that as easily as breathing.

DO YOU HAVE A SENSE OF WHAT STELLA WOULD WANT FOR YOU NOW, IN THIS WORLD WITHOUT HER?
It’s hard for me to say and it makes me cry to write this but I know she wants me to be happy. To stop beating myself up. To keep trying to be good … like I can be. Keep in touch with her mother, help her, which is easier to do than helping myself. It’s a good question. I’m glad you asked … I’ll ask it more often.

WHAT IS OR WAS DIFFICULT ABOUT STELLA’S FUNERAL OR MEMORIAL?
Well we never had one. And it’s been hard. We’ve had gatherings, some quite large, on her birthday, dinner and ‘ceremony’ on her death day with friends … but no memorial. Strange for such a party girl. We took her body down to Portland in my friends mini-van two days after her death; we took her to an animal aquamation facility set up by our funeral service. We said goodbye to her body in a strange warehouse, our best friends with us, watched her wheeled off to the cooler rooms. We went out to the parking lot, all took a shot of Jameson and looked across the highway at the Cancer Hospital. 

WHAT IS OR WAS BEAUTIFUL OR RESONATE ABOUT STELLA’S FUNERAL OR MEMORIAL?
I’m going to call her funeral/memorial the time at the house in the two weeks leading up to her death for this answer. The reason I’m calling this the ‘funeral’ is both because we never had one (Covid?) and because from February 4th to February 18th 2020 something special happened at our house; this was a singular moment not just for me and Amy, and Charlotte and my family and Amy’s sister and our nearest, but for Stella’s classmates, who at 14 were dealing with a mind-bending reality, for their parents who watched their kids gathering at our house, in our rec room below her bedroom every day for two weeks, for the old friends who came back around to hold us and our friends who ran the house while we died with Stella upstairs. It was ‘church’ as my father said; my father, who’s true gift is talking to new people, who did just that in our rec room for days on end, holding them and reporting to us above each day. We were in hell upstairs, my mother our nurse always near. But over the last two years I’ve come to understand how much caring was in that house and how much our girl was loved.

WHAT IS SOMETHING YOU WISH SOMEONE WOULD HAVE SAID OR DONE OR SEEN OR RECOGNIZED ABOUT YOUR GRIEF?
It’s true that an adult needs to learn how to speak to or recognize a person who’s grieving. It’s not a natural understanding, unless there’s been precedent, an experience or a learning moment. It’s not about you, the receiver, it’s about them. I remember a moment when I was 24.  A man I hardly knew from Hawaii ran into me on Capitol Hill in Seattle. I made the mistake of saying “how are you?,” without meaning it, hardly knowing who he was.  That’s a dangerous question UNLESS you’re capable, available to hear the truth in response. This man told me he had breast cancer, yes, breast cancer, and that he was dying. I was speechless, useless to help because a. I didn’t mean, “please tell me truthfully how you’re feeling and what’s going on in your life”, instead I meant, “hello, I don’t know what to say to you”, and b. I had no capacity to understand grief and how to hold someone who’s dealing with pain and impending tragedy.

Had this interaction happened today, I would say, “hello, it’s been a long time, it’s great to see you again,” and wait for cues to help me know where the conversation was going; and if he told me he was dying I would know only this: he needed to know I was looking at him, in that moment, being present for him, not pushing my own discomfort, not weeping for him to show him how I felt. Instead I needed to tell him how sorry I was that he was dying and mean it, read him again, and yet again, and not put my emotions on him at any moment, beyond letting him know how important he was and how valid his current state of mind. I would say: let your eyes and ears let the information in and think of them only.

WHAT IS SOMETHING BEAUTIFUL THAT SOMEONE SAID OR DID OR SAW OR RECOGNIZED ABOUT YOUR GRIEF?
The truth is I’m never in the same place, and the answer is not singular because of that. Someone who sees me in the moment and knows how to separate their fears, discomfort and judgements generally knows how to soothe me. It’s not rare but it’s not common either. 

WHAT DO YOU NOW SAY OR NOT SAY OR DO OR NOT DO WHEN YOU KNOW THAT SOMEONE IS EXPERIENCING GRIEF AND DEATH?
I don’t hug them and weep and show them how sad I am. And I don’t ignore where they are at that moment, and that includes if they’re talking about a Seahawks game or a show or something else ephemeral. They will cue you but it’s hard to see the cues if you’re mired in your own experience. I say I’m sorry and mean it before we part, because that feels good to me when someone tells me they’re sorry Stella died, that I lost my daughter.. I don’t tell them it will get better soon, because that’s probably not true. I tell them I’m thinking about them. Beyond that I make sure I’m listening and reading them.

WERE THERE ANY BOOKS, MOVIES, MUSIC, OR ART THAT HELPED YOU DURING YOUR MOST ACUTE TIMES OF GRIEF?
The Wild Edge of Sorrow, by Francis Weller is wonderful.  Finding Meaning: the Sixth Stage of Grief, by David Kessler.  Better Things, the show starring Pamela Adlon is peerless, made me feel better about … most things. Bittersweet by Susan Cain…haven’t finished it but she speaks to me.

IS THERE A LYRIC OR A MOTTO OR A QUOTE THAT’S BEEN WITH YOU DURING YOUR GRIEF?
Not that I can think of … I listen to Lucinda Williams, Leonard Cohen, Cowboy Junkies. 

HAVE YOU DEVELOPED ANY RITUALS OR TRADITIONS AROUND YOUR GRIEF OR AROUND STELLA’S DEATH?
Writing. It’s been my lifeline. I don’t know a better way of finding out what I’m feeling than when I’m writing.

WHAT’S YOUR MOST PRESENT NEED, DESIRE, OR HOPE RIGHT NOW WITH RESPECT TO YOUR GRIEF?
I’m terrified of forgetting her, and I am; it’s impossible not to lose the memories … for me at least. And I’m losing confidence in myself, losing love for myself and that needs to turn around … I need/desire/hope Stella can stay with me long enough for me to hear her say, “be happy dad” and respond, “I am” … beyond momentary happiness.

WHAT’S SOMETHING YOU MOST WISH YOU COULD DO WITH STELLA, OR THAT YOU WISH YOU COULD SAY TO HER? OR –  IF YOU COULD SPEND ONE MORE DAY WITH STELLA, WHAT WOULD YOU DO?
That’s a tough one at this moment. Everything … she had her whole life ahead of her. I guess I’d go for a walk with her, hold her sweet, delicate hand; visit each of our friends, every one, spend some time with them. I would tell her how sorry I am that she didn’t get to be here longer, that she’s so loved … Look at the foundation started in her name (Stella’s Stars and the Stella Blue High School Campus in Kenya) by her adult friend Selah. I don’t think I can list all the things … everything, everywhere, all at once.

DO YOU HAVE A GRIEVER’S “P.S.”? SOMETHING YOU MIGHT LIKE TO SHARE THAT I DIDN’T KNOW TO ASK?
Don’t wait to love the people you love.

ED NOTE: You can read the first Dossier here, and the second one here.