It was a night in mid-April that I fell asleep to the phrase this is too hard pinging through my brain, and they were the first words to cross my mind when I opened my eyes the next morning. I texted my sisters: “Remember the easy days when it was JUST a baby and cancer???” I pulled myself out of bed, plopped heavily into my wheelchair and stared in the mirror with my fingers splayed across my growing belly. That day we had to decide if my partner Micah would start a second round of chemotherapy treatments that would weaken his ability to fight against this new virus if he caught it, or forgo the treatment and change his odds against cancer. Our baby would arrive in a few weeks.
That spring, as my feet and belly swelled, my classes of high school students pivoted to virtual learning. I scrapped the original plans and assigned personal essays. “Let’s bear witness to the here and now,” I said. “One day, we might even read these essays to our grandchildren.” I wrote alongside them as we journaled every day, paying attention to the details—snippets of dialogue caught at the dinner tables we were now sitting around, the exact flavor of the cinnamon rolls we finally had time to bake, our bodies’ reactions to sitting in front of screens for eight-plus hours a day. Tiny flashes of human experience in the midst of a global pandemic.
As soon as we started drafting our notes into essays, though, the plump, specific moments we’d documented flattened under the task of shaping them, and I noticed many of us pulling in one of two directions. There were the essays that skimmed the surface of loss—I’m bored; I miss soccer practice; when will this be over? And there were the essays of relentless positivity—I’m finally getting to spend more time with my family; I’m learning to be grateful for what I have; I’ve had time to make so many cool crafts. The angsty drafts didn’t reach complete catharsis, the uplifting versions didn’t quite offer hope, and all of us struggled to stay present with our words.
I was no exception. As soon as I tried to weave meaning from the tidbits I’d been gathering, I watched my words splinter on the page. I gave up on the human race in one draft and extracted trite silver linings in the next. I had 10 tabs open on my computer. I obsessively checked for updates on new COVID-19 cases and scrolled through Instagram, eyeing a steady stream of “dumpster fire” memes and gorgeous photos of fresh-baked bread. I kept at least one hand on my belly at all times while the growing creature inside tapped Morse-code messages to the outside world. “We’re still here,” he seemed to say.
When I was very little, I survived childhood cancer. I don’t know how that compares to surviving a pandemic. By the time I reached 6 or 7 years old, I had a script at the ready to testify to that survival. An actual script. I gave inspirational talks with my mom to groups of kids in schools or congregations of church folks. I’d look into the audience from my hot pink wheelchair and profess that cancer and paralysis hadn’t decimated my spirit. “I’m happy this way!” I’d say. “I can still play foursquare at recess!” I could almost feel the energy in the room lift at my apparent resilience. I learned early and with unwavering consistency that there were only a handful of stories written for disabled girls. I could be the brilliant, bright inspiration sitting in my wheelchair on top of a mountain, or the pitiable and sad face of a charity fundraiser. There wasn’t room for anything in between.
It wasn’t until almost 15 years later, in graduate school, when a guy in one of my classes called my bluff. He asked about my wheelchair, as so many people did, and without one thought, I started: “I’m happy this way. My wheelchair has made me who I am, and I wouldn’t change that.”
“You don’t actually feel that way,” he said, shaking his head. “There’s no way.” He was confident, and I wavered. His words came back to me long after the conversation ended. Was he right? Had I only been pretending to be happy? I rifled through long-discarded memories of loss, pain and shame. The time a boy I thought was my friend told the group he didn’t want to invite me to go sledding, because he didn’t want to carry “the cripple” up the hill. The swoony older women who’d applauded my high school boyfriend for dating me. The incapacitating insecurity that went into hiding my deformed feet, my catheters, my anger. The physical and emotional exhaustion from trying to fit in and keep up. These moments suddenly became huge. The pang of them felt like it might swallow me whole.
Of course, it’s only in retrospect I can see that my classmate’s narrative was as reductive as mine had been as a child. I’d skewed exclusively bright, he’d pulled entirely devastated, and both versions kept me separate from myself. Because, as I sat in front of audiences, giving the thumbs-up with one hand and anxiously pinching the folds on my denim jumper with the other, I wasn’t lying. I was happy, and I did play at recess. But my life was as messy as any other. I just didn’t know how to hold onto all the parts.
When I was finally able to sit in my loss, run my fingers over the precise ridges of pain, find language for the experience, that was also the moment I could take a deep breath, see myself and be seen, connect to the world of people who also exist in all the spaces between life and death. Instead of devouring any bit of light in me, my grief brought into focus my scrappiness and the sturdy beauty of my friendships; it helped me piece together a road map to understand my anxiety; it gave me a fuller picture of my own strength.
As I’ve gotten older, my body has challenged my ability to hold onto the both/and of being disabled. A couple of years ago, my lower back became the host for new levels of pain. My legs started spasming and clenching regularly with an intensity I couldn’t manage. After I bounced between doctors and underwent tedious tests, an orthopedic surgeon told me the pain was permanent. He could try to help me manage it, but there was no “fixing” the problem. “We’re just kicking the can down the road,” he said. My first feeling was claustrophobia—a frantic urgency to escape, get off this road, slip into another story line. I think most of us would gulp down any magic potion promising to remove that feeling. How do you sit with the prognosis of “pain for the rest of your life”?
Micah started waking up early to do stretches with me. The street still dark with nighttime, he’d guide my leg as I dragged my heel across the bed. He’d lift it until my foot rested on his shoulder and I felt my hamstring stretch. The last bit of the ritual included 30 seconds of standing together, my arms wrapped around his neck. Sometimes I couldn’t even bear one second before the pain made me collapse, but we always tried.
One morning, as I gripped his shoulders, as my legs spasmed and he held tighter, I lost myself in the frustration of the moment, forgetting to breathe. My brain was a war zone of frustration and sadness—at the pain throbbing through my body, at watching my partner sacrifice sleep to hold me upright, at the realization that I couldn’t escape this scene. And right in that moment—in that breathtaking darkness—Micah nuzzled my neck and said, “I like holding you.” It was awful and wonderful, to need care and to be cared for. The two feelings couldn’t be pulled apart: the fury and comfort, loss and closeness swished into one.
The polarization I bumped into when trying to write about the pandemic, I realized, was familiar—this instinct to cope with that which is beyond my control by rushing to write the last sentence and place it in its proper section on the bookshelf. Our baby, Otto, is almost 8 months old, and sometimes, in the middle of his screeching, Micah and I turn to each other and say, “Happy or sad?” trying to place his emotions into some kind of imagined box. It’s a deep-seated impulse, this need to sort and evaluate our feelings. What is the word for a full and tattered spirit? Sitting in the ambiguity of reality is like balancing a spoon on your nose—it takes intention and endurance.
There’s so little I have control of these days, and my ability to live in the contradictions has expanded well beyond my disabled body in the last year. The first time my sisters met my son, Otto was a week old. He is my parents’ 26th grandbaby, but one of the first to be born without a waiting room full of aunts and cousins and grandparents ready to bust through the doors to smother him in kisses. I’d been the eager aunt waiting in the wings to meet our family’s newest babies more than 20 times without ever knowing if my body could carry a baby of its own. As soon as I gasped at the double pink lines on the pregnancy test, I’d pictured our brand-new wonder baby being swept up in a parade of affection within the first moments his lungs met the air. Instead, after hearing about women early in the pandemic who’d had to deliver babies without a single support person, we were just grateful that Micah was allowed to be with me in the hospital.
I got a COVID-19 test two days before my scheduled delivery, and the day he was born we sent videos over group texts of Otto scowling at the camera and blinking in the evening sunlight. When my sisters came through our front door wearing their masks, we took them straight to the kitchen to wash their hands. I couldn’t see their smiles when I placed my shoe-size son in their arms, but I saw the corners of their eyes crinkle. I saw tears leaking out. Otto didn’t feel their kisses, but he heard their coos.
The morning I texted my sisters when everything felt “too hard,” I got a message back: “This isn’t forever. I can see your little family snuggled up—safe and cozy and healthy—on the other side of this.” And in some ways, it’s played out that way. We snuggle incessantly, and Micah is recovering with a good prognosis. We are unspeakably lucky.
But of course every note in this song harmonizes with another. The pandemic continues to rage as Otto bounces in his Jolly Jumper, round and bald and ecstatic with the most expressive set of eyebrows I’ve ever seen. I can hardly bear to exist from the moment Micah goes in for tests to the moment we get the results to see if his cancer has come back, even though, so far, it hasn’t. More and more people we love are being diagnosed with COVID-19, and I’m struggling to let myself feel anything at all as I wait for news of their symptoms. Every weekday morning Otto and I watch our local doctors give COVID-19 updates on Facebook Live. “Do you see Dr. Stites and Dr. Hawkinson?” I ask him. They report on the beds filling up in our hospital and beg people to wear masks, their voices as familiar to Otto as Nana’s and Papa’s. The pain in my body continues to thrum as Otto is learning what I mean when I say, “Do you want a kiss?” Micah and I spend hours trying to get this wild baby to sleep, and when he’s finally dozing, we huddle our heads together watching videos of him babbling, already missing him—the scariest, softest love I’ve ever known. We watch the restaurants in our neighborhood close or struggle to stay open, and we order more takeout, trying to figure out how to keep everyone safe and afloat at the same time. I watch with a tight chest as people demonstrate a staggering and casual disregard for the lives of the most vulnerable among us—or a vast ignorance about just how many of us are vulnerable to begin with—and my breath catches as I watch others make enormous sacrifices to protect us. All of this is happening at once.
I went back to my drafts and added questions in the margins, “Can we hold onto both?” I wrote. “Is there a way to feel loss and hope at the same time?” Rage and comfort, grief and levity, anxiety and openness, strain and resilience, devastation and creativity—all of it existing side by side, neither experience negating or diminishing the other. I don’t know what I’ll do if Micah’s cancer comes back, if my baby gets sick, if we lose our income or health care. Maybe I’ll reach for different tools. It’s hard to know what we’ll do if.
For now, I’m allowing myself to be in the middle of the story. To recognize that there isn’t one story here, not even one story per person per day. I think it makes sense that we’d struggle to thread the words. This is too big, too fresh for the final line. But when we’re ready to sit in the full stories we’ve been living—when we are safe and have the space—all the pieces are here. Waving to each other through screens and breaking down during Zoom meetings, dancing in our driveways and choking on the chasm between ourselves and the ones we love without us in the hospital, spending hours on the phone catching up with every old friend and even more hours on hold with unemployment, splitting in half when our nightmares come true and exhaling with relief when they don’t, showing up to the same mess day after day after day. These are our stories. They’re tangled and complicated, but they’re ours. Let them be—messy, contradictory, true.
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