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Creative Nonfiction | March/April 2022

The Only Prayer Left

By Nancy Huggett

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. 

42 replies on “The Only Prayer Left”

Lynn Taitsays:
March 16, 2022 at 2:26 pm

Wow!

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Nancysays:
March 16, 2022 at 2:59 pm

Thanks for reading Lynn!

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Andreasays:
March 16, 2022 at 3:21 pm

Thank you for writing this and sharing it with us all.

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Nancysays:
March 16, 2022 at 3:38 pm

Andrea, thank you for reading.

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Lorrainesays:
March 16, 2022 at 5:09 pm

This is so beautiful, describing a hard thing, beautifully takes skill and grace. Thank you.

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Ellensays:
March 16, 2022 at 9:30 pm

You are an amazing writer. I felt every tension, every tear and all the love

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Nancysays:
March 17, 2022 at 9:00 pm

Thanks so much Ellen. It means a lot coming from you.

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Reneesays:
March 16, 2022 at 10:43 pm

This is such an incredible piece. Absolutely heartbreaking. I am still in tears.

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Nancysays:
March 17, 2022 at 9:01 pm

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.

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Heathersays:
March 17, 2022 at 3:04 am

Amazing. This is such a testament to love, resilience, and, the capacity of writing to transform pain into art.

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Nancysays:
March 17, 2022 at 9:02 pm

Yes! That transformation is an amazing gift. Thank you for reading Heather.

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Sarahsays:
March 17, 2022 at 6:28 am

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.

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Nancysays:
March 17, 2022 at 9:03 pm

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.

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Pattysays:
March 17, 2022 at 9:20 am

Such powerful writing. A love even more indomitable.

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Nancysays:
March 17, 2022 at 9:04 pm

Thank you Patty. I did want that love, and the challenge, to come through.

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Jennifersays:
March 17, 2022 at 9:44 am

So powerful and raw. Thank you for sharing this with us.

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Nancysays:
March 17, 2022 at 9:05 pm

Thank you for reading and commenting Jennifer. I am glad that it touched you.

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Candace Cahillsays:
March 17, 2022 at 11:17 am

Stunningly beautiful yet heartbreaking. Thank you for sharing this piece and allowing me to be a witness.

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Nancysays:
March 17, 2022 at 9:07 pm

Thank you for witnessing Candace. I’m glad you see the beauty and the heartbreak. Such a delicate balance, love & caregiving.

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Joannesays:
March 18, 2022 at 8:32 pm

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.

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Nancysays:
March 19, 2022 at 6:06 pm

Thank you Joanne. She has given me permission share this difficult piece. I’m glad I’m writing too!

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Jennifer Rodriguessays:
March 19, 2022 at 1:19 am

Nancy, thank you for sharing this with the world.

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Nancysays:
March 19, 2022 at 6:05 pm

Thank you for coming over here to read it Jen. Grateful.

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Diane Haughiansays:
March 19, 2022 at 10:01 am

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.

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Nancysays:
March 19, 2022 at 6:06 pm

Thank you Diane!

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Ericasays:
March 19, 2022 at 6:59 pm

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

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Nancysays:
March 26, 2022 at 12:19 pm

@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.

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Stephaniesays:
March 19, 2022 at 7:47 pm

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.

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Nancysays:
March 26, 2022 at 12:17 pm

@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.

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Debbiesays:
March 20, 2022 at 3:02 am

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.

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Nancysays:
March 26, 2022 at 12:14 pm

@Debbie, thank you for reading with such attention and pulling out the threads that hold it together.

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Siobhansays:
March 24, 2022 at 12:03 pm

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.

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Nancysays:
March 26, 2022 at 12:15 pm

Thank you Siobhan. We are all healing and have much more peace, grace, and laughter these days.

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Anna Csays:
March 28, 2022 at 2:31 pm

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.

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Nancy Huggettsays:
March 31, 2022 at 9:18 pm

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.

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Charan Tsays:
March 31, 2022 at 7:12 am

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.

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Nancy Huggettsays:
March 31, 2022 at 9:17 pm

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!

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Janiesays:
April 19, 2022 at 2:31 pm

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.

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Nancysays:
April 30, 2022 at 9:14 am

Thank you Janie. It keeps working for me!

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Rachel Federmansays:
May 10, 2022 at 3:53 pm

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.

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Nancysays:
July 22, 2022 at 3:05 pm

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.

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Julie Berrysays:
November 28, 2022 at 10:12 am

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.

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