The year I didn't survive

Grief and new motherhood have transformed my brain, my body, and my sense of self.

Forty was both the most destructive and most generative year of my life. Cells in my husband Jake’s body divided, killing him. Cells in my body divided, giving our daughter Athena life.

I didn’t survive.

The “I” that I used to be—someone who didn’t know what it was like to watch the man she loved dismantled ruthlessly by cancer—died with Jake on August 8th. What was left of her died in childbirth.

Grief and Motherhood have changed the structure of my brain. My hippocampus, vital to memory and emotion, now restricts access to short-and long-term memories¹. I’m forgetful. Anxious. There’s a new sense of paralysis. When Jake was alive, I felt capable. I monitored clinical trials, kept up to date on head and neck cancer research, and oversaw his medical care. I wrote and podcasted. I managed IVF, pregnancy, and bursts of full-time work.

My mind and body were fueled by adrenaline and cortisol; there was so little time to do and say everything we wanted. While nothing remained unsaid between us, there’s so much that remains unfinished. In a letter Jake left for me to read when I went into labor with Athena, he wrote:

“Now the future is here, and, if I were next to you, I’d be absurdly excited. But you’re the person who has to make the future actually happen.”

Making it happen feels Sisyphean. The simplest tasks, which barely required a second thought when Jake was alive now feel insurmountable, if I can even remember what it was I meant to complete. I’m becoming an unlikely Zen master. Grief demands my brain sit in the pain of right now.

The assault on my hippocampus has continued in new motherhood. Surging hormones triggered further pruning of my grey matter, sharpening the areas responsible for emotion and theory of mind². It makes biological sense. Being able to better imagine the perspective of a tiny, nonverbal (though loudly screaming) human being will improve my bond with my infant daughter.

These simultaneous, structural changes caused by death and birth augment each another in upsetting ways. A porousness now exists between my feelings towards Athena and Jake. I’m unable to remember if I’ve checked on Athena, or checked on her thoroughly enough, peeking to watch the soft rise and fall of her ribs throughout the night, the way I used to compulsively check on Jake to make sure he was still breathing. In the silent calm of breastfeeding my mind wanders to Jake’s last hours, sliding into vivid, waking dreams of what he might have been thinking and feeling.

Friends have told me that they’re relieved I seem “like myself” even after everything that’s happened. I don’t understand how that’s possible when I frequently don’t feel like I have a self to be. Jake and I became so entangled in these last few years that it still seems like many of my thoughts belong to both of us. And in a way, they do. The Default Mode Network, a part of the brain largely responsible for self-perception, has expanded its connections in response to birth and death, destroying the illusion of individuality to include Jake and Athena in my sense of “I." ³

Even my body is a chimera. Fetal cells can be found within a mother decades after birth⁴. It’s a comfort to think parts of Athena, parts that also carry Jake’s genetic code, might be forever held inside me. These cells are often found coalescing in areas of pain and hurt. These cells —their cells—must be everywhere.

I don’t feel like myself because I’m not only myself. I’m Jake. I’m Athena.

I’m also a new widow, a new mother. I’m only just starting to understand what it means to be those things as I develop my relationships within those identities. Jake wrote that we live for other people, but we also know ourselves in relation to them. Heidegger philosophized that we develop our sense of self along with “others,” or those from whom one cannot distinguish themselves.⁵ Walt Whitman put it more succinctly: “I am large, I contain multitudes.”⁶

There is no “I” in relation to nothing else or no one else, except as a description of death. Who I become will be largely dependent on who I become it with.

Grief and Motherhood have also transformed me in visible ways.

In photos taken during the last months of Jake’s life, I look like I’m clenching my entire body to keep everything from falling apart. I’m braced for impact. There’s an intensity to my face as I look at Jake as if I’m willing him to live using the power of my mind; it was a face that still believed he might.

Pregnancy was a more obvious transmutation. A revolution of flesh. The skin on my chest browned, as did a thin strip of skin from my belly button to my pubis. My gums bled. Everything grew—my breasts, my hips, my hair, my feet—as the internal upheaval I felt was progressively presented to the world.

Athena asserted the duality of my body by furiously thrashing. The placenta, an organ we grew together and shared, had implanted on the posterior wall of my uterus, so it was easy to see her hands, feet and knees as they punched and kicked outwards.

My belly, a shockingly hard swell of muscle, matched the tension I held in my face. By the ninth month, the skin on my abdomen felt so tight I thought I might split like an overripe peach.

Now, I’ve been emptied. Jake is dead. Athena’s been born. All those unfilled spaces within me are on display. There’s a softness, a slack, not only to my belly, but to my entire body. My jaw has unclenched, letting my lips part in a subtle “o” of shock. The area under my eyes has hollowed; my gaze is unfocused, dazed from sleep deprivation and frank confusion at what my life has become.

In a culture obsessed with snapping back there’s little warning that the body is a fragile garment, an easily overstretched sweater that never returns to its original shape. I’ve unraveled.

When I look in the mirror now, I notice all the places where my body reveals what I’ve been through. And I wonder, in a way that I wouldn’t if Jake were still alive, how this new body appears to others who don’t view it through a lens of love.

I’ve written:

No one will ever see me the way Jake can, again. When Jake looks at me, he sees me at 25, showing up to our first date in a grey mini-dress, black boots and red lipstick. He sees me at 29 in a striped bra and panty set in our 35th story Seattle hotel room, pressing me against the cold glass. And he also sees me as I am now. I’m all these ages at once, as he is to me. Love isn’t blind only to ugliness, but to decay. Look at two 80-year-olds gazing at each other like teenagers and you’ll know what I mean. When I lose Jake, I’ll lose someone ever seeing me throughout all my ages again. I’ve said that parts of me will die with him, and mean more than the parts of my heart and the parts of my personality that act in relation to his. I mean entire eras of my life, all the views he was privy to, and therefore, much of my youth, goes as well. No one—even if I find love again one day, as Jake has urged me to do—will ever look at me and see me at 32, skinny dipping on a trip to Gunnison nude beach in New Jersey with a group of friends, laughing at how cold the water is under the sun of a hot summer day.

Jake used to tickle the hair at the nape of my neck and whisper teasingly that he’d found new grey hairs. If I acted self-consciously, he’d tell me,“You look beautiful,” and I’d believe him. Before chemo took his hair, I’d let Jake’s dark curls wrap around my finger and count each of his greys like tiny victories. He was beautiful, too.

I used to feel like we were getting older together. Now I just feel like I'm getting old. I hadn't realized how different those two feelings are.

Imperfections that Jake loved about me, or would love about me if he were alive to see them, seem like liabilities now. I’m awkward, unsure how to display myself to the world. There’s a pubertal quality to grief and motherhood in midlife. Even calling it midlife, which suggests continuity, feels wrong. This is a new life. A new mind. A new body.

Forty was a year of want: I wanted Jake to live. I wanted to keep feeling his body beside me in bed at night. I wanted to help him build a meaningful future even as life as we knew it fell apart. I wanted him to meet our daughter. I wanted to watch him rock her when she cried. I wanted to keep writing with Jake. I wanted to finish our book together. I wanted to read with him on the couch every afternoon and go on walks through the neighborhood at night. I wanted (and thought we almost had) a miracle cure. I wanted to successfully manage his medical care. I wanted him to start breathing again, for his heart to start beating again. I wanted him to walk through the front door again. I wanted him to hold my hand when my contractions started. I wanted him to tell me I was beautiful the first time I held our daughter in my arms. I wanted miracles.

I didn’t get miracles.

Today I turn forty-one.

My heart still beats with I want, I want, I want. Only now I don’t know what I want.

But my heart still beats.

The average life expectancy of a woman in the United States is 77.32 years old. My grandmother lived to be 98. I might have 40, 50, or even 60 years to fill depending on improvements in medical technology. Fifty years is a lot of time. It’s also no time at all.

Last night, at midnight, I texted Jake's phone, which I haven’t been able to bring myself to disconnect.

“How is this our life?”

It isn’t our life. Not anymore. Now it’s my life, whatever that’s going to mean.

I promised Jake I’d build that new life. And yet, the woman who made that promise is gone. She couldn’t have foreseen life now: that I’d cry inconsolably in the pasta aisle of a Sprouts grocery store because I forgot the brand of anchovy paste Jake used when cooking my favorite beef stew; that I’d feel a shocking nova of love each morning when my daughter’s little face smiles at me.

Time keeps dragging me forward, whether I can see ahead or not. And in the darkest hours, of which there are many, I try to remind myself that I didn’t know what happiness looked like before I had it the first time, either.

If you’ve gotten this far, consider the Go Fund Me that is supporting our daughter Athena’s care and future.

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1. Amygdala functional connectivity features in grief: A pilot longitudinal study: https://pmc.ncbi.nlm.nih.gov/articles/PMC7483593/

2. Motherhood and theory of mind: increased activation in the posterior cingulate cortex and insulae: https://pmc.ncbi.nlm.nih.gov/articles/PMC9071419/

3. Narrative imagery: Emotional modulation in the default mode network: https://www.sciencedirect.com/science/article/abs/pii/S0028393221003407

4. The lingering presence of fetal cells in a mother’s body: https://www.smithsonianmag.com/science-nature/babys-cells-can-manipulate-moms-body-decades-180956493/

5. Heidegger on identity and the self: https://plato.stanford.edu/entries/heidegger/

6. Walt Whitman’s “Song of Myself”: https://whitmanarchive.org/media/data/whitman-criticism/source/pdf/anc.01063.pdf