I lie beside my husband, unable to sleep, to let go. He has opened the window to coax a summer breeze or the sound of cicadas to lull us. I listen. One ear to the outside sounds of summer, one to the quiet hiss of the borrowed baby monitor linking us to the bedroom down the hall. Our daughter’s room. Our 26-year-old daughter, whose post-stroke breathing pulses into our bedroom, tethering the beat of my heart.
For a full week she has slept through the night. But one week is not yet a pattern, not yet a reprieve from the tentacles of hypervigilance that buoy her and slowly strangle us. So, we listen for the cracking of the knuckles, the repetitive reading of the time (9:01, 9:02, 9:03), the forceful blow through the nose—the sounds that indicate her inability to settle. Or for the tell-tale cough, a warning of a gastro disaster that will inevitably send us to the hospital for rehydration to ward off yet another TIA or stroke.
I focus on the in-out of my breath. Repeat a mantra. Imagine waves against the sand. Reach out to hold my husband’s hand, which grounds me. We gently squeeze, anchoring each other, shoring each other up for the unknowns of this night. But I cannot stop listening, my cells still vibrating at some deep level from the shock of the last year. My body exhausted by grief and grit in equal measure. Held together only by the food cooked by community, the accompaniment of friends, sheer determination, and a complicated web of womb-deep love.
It began on our family holiday in Maine, with difficulty swallowing, slurred words, tears, a trip to the emergency room. There were strange diagnostics and MRIs and shocked doctors, and finally the answer: “A stroke. She’s had a stroke!” We careened through her diagnosis—a rare degenerative neurological disease—her need for brain surgery, and then catastrophically, a post-surgery stroke that left our daughter without language, memory, or the ability to initiate movement. And left me, still reeling from my mother’s sudden death just months before, crouched, shivering in the hospital hallway, a moaning ball of tears and shock. That the universe could gift such loss, unmoor from me mother and daughter all at once. Then I took a deep breath and rising, as mothers do, I stumbled into the blinking, beeping, machine-saturated room to crawl into the hospital bed and hold her, swollen and bandaged, in my arms.
We brought her home. I quit my job, my husband keeping his, and us, afloat. We bought a commode, sweatpants, a blender for soft food. We learned new words: abulia, incontinence, aphasia, dysphagia, frontal pull. New ways of prompting movement, of cooking, of talking, of encouraging and of waking from sleep, of going out into the world. Her slow movements and minimal language underpinned a gentleness and affection that kept us moving forward one mindful step at a time.
And then the day she shifted: kiss, kiss, kiss, SLAP. “I’m done loving you,” she said.
Language had returned. And memory of what, perhaps, she had lost. All frozen in the photo album thumbed through for therapy, to remind her of who she was, could be. A fancy prom in fancy dress, a boyfriend at the breakfast table, wild laughter caught mid-grin, and promo posters plastered on downtown windows for a dance career careening upwards. The budding of her own sweet life, a fluid swirl of friends and forward motion.
Then something else just off the grid appeared: an explosive anger, hitting, yelling. “FUCKOFF! FUCKOFF! FUCKOFF!” Expletives and a flurry of fists flung like random grenades into the war zone that has become her, and our, life. Expelling a string of caregivers, friends, neighbors into the netherworld of gone, long gone, leaving only the determined, the committed. Who are we humans anyways, that stroke could hijack our essence into anger, fear, and swearing? So much swearing. Her cursing cortex rebirthing this charming charismatic daughter of ours as stranger, threat.
I turn my back and her full-fisted blows almost knock me to the ground. In shock, I weep. But learn quickly to stifle the tears, as they only incite more rage. I save them for safe places—a morning walk in leafy shade along the quiet river; hiding at the back of dark wooden churches, listening to the swelling voices of a community choir; or under searching and insistent hands on the massage table—and I use all the hard-won respite hours for crying.
Sometimes she is Pamela. With a British accent. Because she has been reading Jane Austen (reading calms her). Sometimes she is from Jersey: “Frankie, drink your fuckin’ wine!” Because she has been watching Jersey Boys and lines from movies that fit the moment erupt from her mouth as her own words fail her. “You’ve got two hands! Do it yourself!” (Ever After). “I’m sorry, Neville. But I really have to do this!” (Harry Potter).
We move slowly, warily. Mindful that we walk on the emotionally unstable ground that has become her life. A brain suddenly jolted into overdrive, exploding with sensation, sound, light, noise. Fight or flight. Fight or flight. Fight or flight.
We don’t ask the question that hangs oppressive in the summer heat between us in this marital bed: Is this it? This remainder of a young woman blossoming? A shell of primal anger and fear that we must love, must love! Must learn to love all over again without comparison.
Frenetic energy: friends walk with her, 10,000 steps a day to tire her out of mania. Sensory sensitivity: hats for the wind, hair tied back and spare elastics, sunglasses, scanning the street for garbage trucks, approaching crowds, ambulances. Sometimes, when she dances: pure grace. At home in her body, herself.
Tonight, like every night, we listen: to the wind, the heartbreak. A knuckle cracks, a nose is blown, a shift of sheets, a groan. She yells, “I’m at Hogsmeade.” My husband mumbles “Get back to Hogwarts,” trying to save me. It’s my watch. “Go to sleep.”
Silence. A murmured “Fuck you Mom.” Then again, slightly louder. And a third time, just in case. “FUCK. YOU. MOM.”
Melatonin has settled her sleep this past week, but today it rained, and she did not walk. I shift out of bed and pad into her room. Sit in the bedside chair and ask, “Would you like me to rub your back?” “Yes.” She rolls over. I will my hand to smooth calmness into her fractured being. “Fuck you Mom,” she whispers.
She rolls onto her back. Asks me (for the first time, a direct request) to rub her forehead. Slow and gentle, back and forth. Breathing a calm constancy into the tempo of profanities. “Fuck you Mom,” between the rubs. “Fuck you.” She fades, her breath taking over the rhythm. Deep breath. “Fuck you.” Deep breath.
I lean over, not too close. I breathe in the anger, take it in. And breathe out love. Breathe in: anger. Breathe out: love.