Essence to Essence: Rewriting Our Story, Together
Word Count: 1,950
Estimated Reading Time: 8 Minutes
My beloved sister Deanna passed away on May 21.
Her passing is a heart-shattering loss. In honor of her—and one of the many gifts our relationship gave me—I offer this reflection.
For more context, here are Deanna’s Deanna’s obituary and the CaringBridge site that helped us stay connected with friends and family during her final days.
Each of us walks a path uniquely our own—shaped by the constellation of experiences we live through, the roles we inhabit in our families, and the joys and traumas we carry, all of which inform the quiet assumptions we make about ourselves and what’s possible in the world.
And yet, as unique as each path is, story reminds us how deeply meaningful it can be to learn from one another’s experiences. What follows is a story from one of the most elemental threads of my life: my journey with my sister.
The Look I’ll Remember Always
As I write this, five weeks have passed since I sat with my sister in her final days—crystallized in a moment so precious, I know I’ll flash on it when I die.
In the middle of the night, as a nurse came in to check on her, she stirred. I was half-dozing in the not-so-reclining hospital recliner, my face just inches from hers.
She opened her eyes, saw me—and her whole face lit up, as if I were the most radiant being she’d ever seen.
"Well, HI THERE, Cutie Patootie!" she said, beaming.
Then she drifted off into a sweet ramble of affection about her beloved husband Matt.
That look—I’ll carry it forever.
There are no words. Only love. This was us: essence to essence.
Who we were from the beginning. Who we will always be.
It was one of our last moments of connection, as she moved between sedation, delirium, and end of life.
Thank you, Dee, for this life we had the possibility to live together as sisters. I love you. More than words.
Living in the Liminal
Our last real conversation was the morning of Sunday, May 18. It was mostly logistics—her laptop login, her Facebook password, her wishes for her remains.
We could talk about those things because we’d spent the last two years in deeper conversations—the kind that open when life enters the liminal space between living and dying. In that space, nothing is assumed. Everything becomes sacred.
Two years ago, in May 2023, after four decades of chronic illness, Deanna was diagnosed with a rare, advanced cancer of the small intestine—discovered only after it ruptured her intestinal wall and blocked digestion.
That rupture marked another: I quickly left my life on Whidbey Island and moved to Bellevue—close to her treatment team at Overlake, close to our parents in Woodinville, close enough to support her however she would allow, as she fiercely valued her independence.
Her journey to stay with us included living through three kidney transplants. Steroid-induced diabetes. A heart attack. A stroke. So many infections. Two rounds of septic shock. More surgeries, procedures, and hospital stays than we could keep track of. Bodies are systems of systems—and hers bore the weight of compounding complexity. And still, Deanna remained powerful, joyful, deeply alive, with a wicked sense of humor.
Over these last two years, my heart has leaked through its bottom—in grief, awe, fear, reverence. In anticipation of loss, alongside a commitment to hope.
With her diagnosis, immunotherapy posed too great a risk to her kidney for her transplant team to approve, so her chemotherapy journey began. Our family found a rhythm. Matt held the base-beat of support at home—working full-time, maintaining their health insurance, accompanying her to appointments and hospital stays. Our parents stepped in as the chemo-infusion team, spending every-other Wednesday with her, buoying her spirits with a favorite card game. Mom was her walking buddy for appointments. Dad, her driving buddy.
Deanna went through about 40 sessions of chemotherapy, with occasional pauses for low platelet or white blood cell counts.
My role was Friday morning chemo-take-home-box-removal buddy. That rhythm made it possible for me to sleep over every other weekend, from Friday to Saturday.
Each time, I’d slip out early Saturday morning to run the trail to Wallace Falls—just ten minutes from their home in Gold Bar. It’s a trail I first hiked at seventeen, and one that’s stayed important to me ever since.
Each step was part prayer, part exhale, part remembering. Place holds memory. Spirit. Everything. The rushing water mirrored the flow of our lives together. The seasons mirrored her courage to keep going. Step by step, memory by memory—I became someone new on that trail, seeing our lives and journey together through adult eyes.
The Story Beneath the Story
There’s a story my mom tells so well: when Deanna was three, her beloved friend Tony had a sister—and she wanted one too. She kept asking. Persisting.
This story has shaped my whole life—not just because it’s cute, but because it’s true. Deanna called me into this world. I exist because she wanted me here.
We were born four years and seven days apart—June 2 and June 9. Gemini twins. Yin and yang. She was sweet; I was intense. She was agreeable; I was stubborn. She knew how to have fun; I took my piles of children’s books very seriously. She was organized; I… learned organization from her.
Two halves of a whole. We never fought. Our young parents worked opposite shifts so that one of them could always be with us—and we could always be with each other.
When illness entered Deanna’s life, triggered as best as we can understand by a case of strep throat that sparked an incurable inflammatory response in her kidneys, it changed us all—reshaping our family in ways I’m still understanding: pain woven through with remarkable and profound gifts.
In her teens, Deanna’s trajectory moved toward full kidney failure. Prednisone collided with puberty. Being a teenager is hard enough—add high-dose steroids, hospital stays, and an uncertain future, and you have a storm, which in hindsight she navigated stunningly well.
My experience was that I became a kind of outlet for the pain and anger she was living through.
As I would come to my mom in tears, she would lovingly invite me toward understanding—to not take it in and take it on personally. “Sweetie, steroids can make people mean.” We all did our best to navigate the pain together. This wasn’t personal to me. We were, all, genuinely, doing our best, and the circumstances were challenging beyond all of our capacities.
Still, I did internalize it. I turned it inward, against myself. And over time, I quietly disappeared.
First by subtly withdrawing—becoming more shy, more studious. Then, in college, concretely withdrawing by focusing on my own path. I’d like to claim that it was healthy differentiation, but it mostly wasn’t—it was fleeing. I would visit for holidays and key occasions, but was otherwise noticeably absent.
Our values diverged, which created more distance: I, terrified about climate change and environmental destruction, became righteous in my fixation on saving the world. She, fighting for her life, focused on the joy of living.
The more absent I was, the more it felt like rejection to her—while my story was that I was the one rejected and not wanted. In a spiral of avoidance and hurt, we lost each other. For fifteen years.
As humans, the meanings we make when we’re young—our efforts to make sense of the senseless—can harden into narratives that long outlive any usefulness, contributing to harm.
Misunderstandings, stories that were never true, became locked-in narratives that kept us apart.
I came to believe that the cost of my not being sick was to absorb the pain. Not just hers—but everyone’s. That my right to exist was earned through taking it ALL on. That my role in life was to endure, be competent, to be independent—to not need anything. Carrying all that weight I became weepy and perpetually overwhelmed as a person, but couldn’t sort out how to put much of it down.
It’s a precious gift to be able to transform such formative narratives. To rewrite stories that shape our identities. To see ourselves—and one another—with new eyes. To be able to relate differently.
And even more precious: to be able to do it together.
This is yet another gift Deanna gave me. Over the past twelve years, as we reconnected, and in these last two years most fully, we rewrote our story—creating a new, far truer one, together.
Essence to essence, we found our way back to one another.
The Return
Through my pilgrimages to Wallace Falls, and our ordinary daily activities—making her fabulous Mexi-bowls, watching movies curled up on the couch, trips to Costco—I felt again the easy bond of our childhood days.
And with adult eyes, I could finally see what my mom had tried to help me understand: “Steroids can make people mean.” It wasn’t an invitation to tolerate mistreatment, but to remember love through the impact of the medication. It was a call to remember: Dee’s still in there.
It’s been a lifelong lesson to understand that staying connected and honoring someone’s dignity doesn’t mean accepting unacceptable behavior. I can say yes to the person and no to the behavior—standing for what’s generative and life-affirming.
Deanna always wanted me to be more assertive. It pleased her to see me fight back for myself—even if it meant fighting with her.
She had her own reckoning. On high-dose prednisone again during chemo, she became alarmed at how furious she felt all the time. She worked with her doctors to lower the dose—refusing to live that way. As the dosage came down, her joie de vivre returned, and so did the Dee we all knew.
These experiences opened a new level of compassion—for her, for myself, for everyone. In real time, with adult eyes, I could understand differently these challenges of my youth.
I could feel Deanna’s love again—a red thread that had run through our entire lives. I could put down the hurt I’d carried over the years I disappeared, believing that stepping away was the only available choice and had somehow made things better for everyone. I could take in her love—a love that shaped me, that called me into this world, that never wanted me to carry what I did. And she could receive mine again—a love that had always cherished her.
During one of our couch conversations, I was able to tell her: “Deanna, I’m so sorry I disappeared all those years.”
She responded, “I’m so sorry, too. I missed you. You know, you’re amazing, Heather. I love you so much. And… well, you’re here now.”
Essence to essence, we found something deeper than forgiveness. We simply found each other again.
The Thread That Remains
Deanna called me into life. Even in the hardest moments, she and our incredible parents showed me how to laugh, how to let joy live beside pain. That joy became transmutation. That laughter, alchemy. Joie de vivre is not a denial of the difficulties of life; rather, it makes it possible tobe with them.
Through our shared journey, I’ve learned to live in that joy—reveling in the awe of it all, even amidst, in spite of, because of, and in resistance to all that is terrible.
To meet people where they are—with dignity, curiosity.
To see through pain to what lies beneath.
To love through heartbreak.
To hold fast to the miracle of one another.
And—it must be said: she became a far more diligent recycler than me.
In her passing, I’m heartbroken in ways I didn’t know were possible. And yet—I feel her with me. Not metaphorically. She’s here, in me, in who I am.
In my grief, I’m grateful beyond words for these past two years. For the chance to fully come home to each other. For the time to enjoy each other again—essence to essence.
