The Only Prayer Left
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.
46 replies on “The Only Prayer Left”
Thanks for reading Lynn!
Thank you for writing this and sharing it with us all.
Andrea, thank you for reading.
This is so beautiful, describing a hard thing, beautifully takes skill and grace. Thank you.
You are an amazing writer. I felt every tension, every tear and all the love
Thanks so much Ellen. It means a lot coming from you.
This is such an incredible piece. Absolutely heartbreaking. I am still in tears.
I’m grateful that you read the piece, and it touched you. It was hard to write. But neccesary in so many ways. Thank you for commenting.
Amazing. This is such a testament to love, resilience, and, the capacity of writing to transform pain into art.
Yes! That transformation is an amazing gift. Thank you for reading Heather.
What a remarkable piece. The narrative invites the reader inside journey. You can feel the plight of the caregiver and the profound love for the child.
Thank you Sarah. That balance between caregiver and loved one is so hard to figure out in telling a story where you really only know your own experience.
Such powerful writing. A love even more indomitable.
Thank you Patty. I did want that love, and the challenge, to come through.
So powerful and raw. Thank you for sharing this with us.
Thank you for reading and commenting Jennifer. I am glad that it touched you.
Stunningly beautiful yet heartbreaking. Thank you for sharing this piece and allowing me to be a witness.
Thank you for witnessing Candace. I’m glad you see the beauty and the heartbreak. Such a delicate balance, love & caregiving.
Your daughter is lucky about one thing – to have such a compassionate, brave and wise mother. You shared this story in such a beautiful way. I’m so glad you are writing.
Thank you Joanne. She has given me permission share this difficult piece. I’m glad I’m writing too!
Nancy, thank you for sharing this with the world.
Thank you for coming over here to read it Jen. Grateful.
Oh Nancy, so profound , deeply moving, and a beautiful account of such loss , love and courage. And you see the beauty and humanity in your journey. Love to you and Dan and Jessie.
Thank you Diane!
How profoundly moving…the waves of fear, grief, anger, sadness and the unfaltering depth of love that is felt while reading is beautiful.
You are brave and stong just like your Mom.
Sending you, Jessie and Dan much love and peace
Thank you for sharing
@Erica… thanks so much for following the link and coming over here to read this. In many ways, I am so glad Mum is not here to see the outcome. But glad her bravery & strength were gifted to me for this part of our adventure.
This is piece is full of raw emotion that gives the reader a glimpse into your experience, and into feelings of uncertainty, and fear wrapped in love. It is evocative writing that stays with the reader long after the reading is done.
It could be a series, and I would love to hear what your daughter would write.
@Stephanie… that is a great idea…she does read what I write and has in the past written, but finds it difficult still. I am working on a collection and figuring out how her voice figures in.
Mothers. Daughters. Life’s beauty. Life’s cruelty. Dedication. Desperation. Hopeful. Helpless. Anger. Love. Always love. Heartbreaking love. Forever love. Endless, boundless love.
Thank you for sharing your heart, Nancy.
@Debbie, thank you for reading with such attention and pulling out the threads that hold it together.
Such beautifully written words to communicate such biting, breaking loss. I’m sorry for your losses. Hoping your daughter has more joy and peace and so do you and your family. Gorgeous writing, filled with tension and release and vivid description.
Thank you Siobhan. We are all healing and have much more peace, grace, and laughter these days.
Oh! So many beautiful, raw phrases here, but this, this brought tears:
not yet a reprieve from the tentacles of hypervigilance that buoy her and slowly strangle us
I know this feeling born of love, of exhaustion, of not knowing what else to do but put one foot in front of the other. You have captured it so eloquently.
Thank you for sharing this powerful glimpse. Peace to you and your family.
Anna, peace to you and thank you for reading. It is a delicate journey and I only hope others can see their lives & love & caregiving reflected.
Wow @Nancy. Every line pulls me deeper and deeper into the story. Love your energy at focusblocks and now I am amazed by what you are capable of.
Oh Charan! Thank you so much for coming over here to read this! This means a lot to me! My writing is thriving at Focus Blocks and the energy I get from you & other coworkers is awesome!
What a powerful piece of writing born from such a cruel situation. I am going to do my best to ‘Breathe in: anger. Breathe out: love’ what a wonderful mantra for everyone.
Thank you Janie. It keeps working for me!
Profoundly wrenching, a gorgeous, shredding, devastating piece. I agree with the others. You’re a gifted writer and mother. Thank you for sharing this with us.
Just saw this now! Sorry it took so long to reply Rachel. Thank you for you kind comments and for reading and responding so sensitively to this piece.
I was amazed and devastated by your story. Silly me, I didn’t think to Google you until today’s email. What exquisite writing! Thank you for doing the work to bring this to life.
I read this piece, no, I inhaled it. Then I reread it. Again and again. Your writing is exquisite and painful and you are out there and bleeding. And I am looking in and admiring your talent to share your pain. Oh, your pain. You are an amazing person and an amazing writer. All the best to you, your husband and your suffering daughter. Lynn Tait shared your piece with our writing group. Thanks to Lynn and may your future show glimpses of healing and sanity.
This is such a stunning piece of writing from such a difficult time. Thank you, thank you, thank you for sharing it.
Dearheart. Thank you for reposting. I missed the first time.
I feel your power and grace in your writing. Also, my heart breaks a thousand times. Your craft is a blessing and may spare us all from being shattered. Xoxoxoxo
This is magnificnet. It was difficult to read, to revisit in my own personal way, to feel this, these dichotomies, “not yet a reprieve from the tentacles of hypervigilance that buoy her and slowly strangle us” . Oh god, the “hypervigilance” your daighters grief and agony, to understand some of it too specifcally and well, to be invited to rememeber it . My heart goes out to you, your daughtrer and your husband… It amazes me how deep love goes when the person you love the most bares the burden of their own despair… your daughter trusts you so deeply… “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. ”
Tragic. I am so sorry for this horror in your lives. What beautiful, honest, profound writing… I am so glad your daughter reads what you write… In my mind… only true love can express this kind of grief so clearly and painfully. I’m sending love to you, Nancy… and to your daughter, and to your husband as well… I am sad you are going through this. Thank you for sharing this, I am baffled by life sometimes.