The Lesson I’ll Carry in My Body
Donald Trump mocked disability. His presidency made us more vulnerable, but I’ll hold onto the strength earned surviving his term.
It can be hard to measure how much each of us absorbs due to harmful leadership, but the poison certainly expands as it radiates outward. I was not the reporter with a disability whom Donald Trump mocked, but I received my portion of the scorn he cast at journalists generally. “Enemy of the state” I learned to eye roll. His flapping arm impersonation is burned in my brain.
I’ve lived these past few years in an awkward straddle. My work lives in words, jotting down what strangers tell me about their lives, fact-checking claims, sorting through my own observations, and rearranging ideas on a page. I’ve tried to make sense of politics that plied itself away from reality as I once understood it, an America that is angrier, more violent, and more tragic than I was once too naïve to discern.
But in my off hours, I somehow learned to become more optimistic. In 2017, I was part of that Pink Wave of women who got so fed up that I ran for local office. It was a surprise gift; I fell hopelessly in love with local government. The side gig on my small town’s nonpartisan, city council offered solace, hope. In practice it was essentially a glorified (or vilified) volunteer position that gave me steady access to quiet good will. I saw people tending to their neighbors. Paid $5/month for the council role, I got a chance to work with kind souls, true local public servants, and it created a lightness inside my body that stood counter to what flowed in nationally. Our country wasn’t really lost, I insisted.
I had little desire for the attention that came from running. I loathed standing before people and asking for their concentrated observation. Words on paper, I can do. But for the better part of my adult life, I’ve hoped to avoid others noting too closely the details of my body, my voice.
When I was a kid, younger than my daughter now, my writing hand had begun to twist and make my cursive writing hand position — the nonsense a kid could get graded upon — irregular. It was as if I were stubbornly refusing to grasp my pencil and hold my arm as the teacher directed, but really, it was my hand responding to neurological misfires. By middle school, I had a slight limp. By high school, my vocal cords started their own dance, and I was ashamed of sounding different. I was inclined to believe that if I pretended my symptoms didn’t exist no one else would notice them.
It is a unique irony that a leader who scorned all manner of difference would threaten what I love most about our country enough to propel me to put my character, my voice, my own ability to lead up for public scrutiny.
One woman told me how much it meant to her family, because her daughter uses a wheelchair, to see someone like me in this position.
“Me?” I squeaked, shy that she’d noticed me.
I can draw a timeline of my progression, the couple decades before I had words for what my body was doing and why. There’s a tick along that line from diagnosis with dystonia, when I resigned to my symptoms’ reality and began yoga to try to still and quiet my body, started three days a week of cardio on an elliptical that lets my stronger limbs propel the weaker. Hours, daily, spent on adaptation. So much of the same sweaty grind, dotting years of my life.
I did the work, trying to manage my body as well as I could.
Like many working parents, the pandemic, lockdown, and the paired anxiety of global plague and the vanished illusion of work-life balance injected a steady dose of anxiety into my body’s already delicate imbalances. The scar tissue from 2020 doesn’t live in my respiratory system. To my knowledge, I have not yet contracted Covid-19. Still our first pandemic year knotted itself into my muscles, rattled my body like a marionette.
The city council role became complex. It was no longer just decisions about traffic calming and planting trees. How would we juggle the financial strain of shutdown and upheaval in our neighbors’ lives? Absent clear federal or state directives, how would we tend to public health? How would we each respond to our country’s reckoning with racial injustice? In new ways, I recognized how much my whiteness had shielded me from the bodily vulnerability my friends and neighbors witnessed and felt around themselves every day.
My lens expanded and contracted at the same time. My responsibility to stand up for others fixed itself firmly within me, as my own body became less steady.
Despite medication and quarterly Botox injections to quell my most overactive nerves, by the end of summer last year, the dystonia that twists my leg, spasms my shoulders, adds breaks to my voice, and jiggles my jaw manifested as an increasingly persistent head tremor too. My head was tremoring with a frequency that reflected how much stress had climbed into my nerves, balled up in the tissue those nerves activate, and it plucked, plucked away as anxiety weighed itself upon my shoulders. The world shut down, and yes-yes my head nodded. I feared my writing career would evaporate as my children and husband became fixtures in the rooms of our home where I spend my days working. Yes-yes-yes my head beat away.
On our Zoom-streamed council meetings, when I took a sip of water, I had to use two hands to coordinate between twitchy arms and jerking head. President Trump and his detractors debated his ability to wrest water from a glass one-handed as if it were a qualification for good governance. Trump mocked Joe Biden’s stutter.
Trump has served as a constant reminder of our world’s cruelty toward people who represent difference. I didn’t realize, head bowed each morning over my phone scanning the headlines, a twist in my stomach, how much every exercise and stretch to tend to my body had been overtaken by the simmering viciousness that Donald Trump normalized over the past four years.
Stigma is an insidious disease, and I felt its mutations.
I hated how my struggle seemed magnified, my vulnerabilities visible. I wanted to show the empathy my body has taught me. I hated the perpetual reminder, like a metronome atop my neck, that health and wellness depend upon a matrix of care and chance. I donned my mask in public, suddenly aware of everything I touched, the closeness of anyone approaching my six-foot personal bubble. The precariousness of all our bodies was fearfully in my fingers if, for instance, I had to touch a door. It was in the hundreds of thousands dead from Covid, the millions sick.
The awesome weight of the pandemic and all its revelations vibrated my nervous system. I was scared and stressed and angry — furious at the lack of serious leadership at the federal level, at senseless death and injustice rocking cities across the country. I was embarrassed my body was visibly acting outside my control and ashamed of the able-bodied norms I’d obviously absorbed.
For months, I couldn’t see that maybe the manifestation of my strain and care was important for others to see, to know, someone, somewhere with a voice to raise over all of it felt the impossible upheaval of this year down to their bones.
In September, when the leaves were just starting to yellow at their edges, in what felt like the longest year of our lives, my husband, our two kids, and I took a bike ride at a nearby state park.
I’d been expecting to ride along a nicely graded cycling path, but instead, we rode down a paved route that ended halfway down a grass hill. My husband disappeared into the woods onto a trail that cut a brown, pine needle trail under a shady canopy. It looked flat, where I saw him ride in.
I put my chin down and pedaled my decidedly non-mountain climbing bike in after him and our children. My bike and I bounced along at the random rhythm of irregularities in the trail. If my head tremored, I didn’t notice. My husband called: Was I sure I wanted to do this?
I was filled with autumnal exuberance, the expansiveness of nature, of being outside and feeling strong after so many months of fear and caution. I was fine if I kept pedaling. The welling scream that had resided in my chest all year insisted I keep going. Do the thing I shouldn’t be able to do. Isn’t that what all we’d been doing?
But about twenty minutes later, I bumped into a silvery root snaking the path. I halted and in that instant of stoppage held a thought about getting off my bike and leaned onto my weak leg — right at the hip, right in the places just made weaker by my injections to fight off all the ways that leg pulls the wrong way. Inside, everything buckled. The world turned. I fell to the side, bike landing on top of me, body colliding with felled limbs and a thicket of brambles and thorns.
My physical loss of control, the surprisingly slow tip into the hard earth carried the residue of a cursed year. My head ticked softly, yes-yes-yes. I was fine. Hurt, but fine.
I lay stunned for a moment, thinking how stupid it had been to try to balance on a leg I knew I shouldn’t trust. I cried out a bit as I attempted to roll to sit — and pin cushioned myself with all the thorns. My husband, who is always so calm in crisis, who had spent half the year telling me, really, we’re going to be okay, darted toward me and wanted to hold me up. I was more concerned with first unfurling my legs from the thorns. Once loosed, he put his arms under mine, hoisted me up, and just asked me to hold on.
My feet were under me again. Our bike helmets softly nudged together as my head said yes-yes-yes.
When I started to pull away, he pulled me back against him, asking me to let him keep holding onto me. I leaned into his shoulder, glad to have the moment to trust our ability to remain rooted to the ground. Grateful, ultimately, for my space in this world and the strength earned by all the times I’ve gotten back up.
For too long, I’ve feared how I might be judged for my body’s irregularities. Donald Trump, like a nightmare specter, concentrated all those fears. Because of him, in part, I ran for office, felt compelled to submit myself to the critique of my neighbors but also to serve their needs — if for the chance to try to balance in my community what felt like swirling chaos. To try to undo a bit of the damage. That put me at a local front, absorbing some of the past few years’ instability and my neighbors’ obvious pain until it jettied out wherever my body would let it.
I’m not naïve. I know how much work lies ahead. Every small town and city across this country is resource-starved and filled with people at threat of illness and death. We’re all more obviously vulnerable now.
But our collective vulnerability made undeniable by these past years’ cruel surreality has also underscored the radical power of our everyday fights for wellness, for our bodies’ security. We’ve all adapted to so much. My voice shakes but I raise it anyway. My conviction that all people deserve to be treated fairly, to be seen as whole and valued has been cemented by these years.
It took me too long to apply the word disability to what range from inconveniences to aspects of myself I strived to overcome, fix. But the hidden gift of my body has been learned resilience, making me, ultimately, adaptable.
Adaptability, like true leadership, requires unseen mechanisms of strength. Vulnerability also reveals our courage. We’ll need both strength and courage in large measure as we recover from this time and try to lead one another through.