Mar 24, 2022
Write, Cry, Breathe
Surviving the Process of Transformation
This book won a 2020 Colorado Book Award in the Anthology/Collection category. It’s a big deal.
I’m also one of the authors who was chosen to be in the collection. That’s also a big deal.
The personal essay, “Write, Cry, Breathe: Surviving the Process of Transformation,” I wrote for the book is another big deal.
I’m about to reprint the entire essay here for you, but first here’s a little bit about the book and how I came to write this essay . . .
From the back cover:
RISE is a collection of prose and poetry exploring the concepts of change, renewal, and rebirth. When things change, we experience a variety of emotions — from anger and fear to courage and hope. There is struggle and strife but also the opportunity to rise from the ashes and create, grow, and love.
In these pages, you’ll find stories and expressions of joy and sorrow about love, friendship, family, marriage and divorce, loss and grief, the aftermath of natural disaster, and the consequences of our actions, whether momentous or seemingly inconsequential. Change comes to us in many different forms, but we can be inspired by each other to grow in strength, hope, and resilience as together we each face the challenges of change.
Every poem, story, and essay in this book took my breath away when I read it. Each of us put our hearts and souls into the making of our separate pieces, and each person at the Northern Colorado Writers organization who helped compile and edit the book did the same.
Sometimes we’re dragged kicking and screaming into change and transformation. Sometimes it’s subtle. For me, the experiences I wrote about in, “Write, Cry, Breathe,” were a little bit of both.
I prefer to see drama in art and architecture and not experience it in my life. But of course that isn’t how it works out for most of us. My big, personal drama involved meeting my perfect mate and embarking on our lives together, only to lose him to Alzheimer’s disease and dementia within a short six years.
“Write, Cry, Breathe,” is the story of how I navigated the horrors inherent in that experience. I wrote my way through it, I cried my way through it, and I breathed some, too. And it changed me.
I hope my story inspires you to grow in strength, hope, and resilience.
Write, Cry, Breathe:
Surviving the Process of Transformation
When the universe pushes you to join an online dating service, insists you accept an invitation to tea from a pleasant-sounding British gentleman, then instructs you to kiss him when you see him, it’s wise to comply. Alan and I met (for tea, of course) on a hot sunny afternoon in August 2005. The next day, he asked me to marry him. I wondered what took him so long.
The wedding was a few months later. It was the second marriage for both of us, and our bond was lovingly fierce and uncompromising. Our souls were on fire, and they burned hot, quick, and bright. But before the end of our sixth year, he was gone.
Nine months after we were married, my new husband was diagnosed with dementia. Love can be a trickster. It can be innocent and affectionate or cruel and gruesome, all the while disguised as transformation.
We understood that this dementia, this thief, would take its time fracturing our union. No one and nothing but this wretched disorder would pull us apart. There would be a significant, progressive decline in Alan’s cognitive functions, his balance, and motor skills. His thought processes, reasoning, memory, attention, language, and problem-solving capabilities would come and go. Mostly go. Finally, his body would forget how to carry out normal functions — like swallowing and breathing. And then he’d make his transition to the Great Love in the Sky.
Four years after the diagnosis, Alan fell at home. He was standing at the bathroom sink when his legs simply gave out. Within hours, he went from having moderate dementia to severe dementia. Before the fall, he required minimal help. He’d ask me to tie his shoes or button his shirt. After the fall, he couldn’t pick up a spoon to eat breakfast. When I put it in his hand, he didn’t know what to do with it. Silently, I railed at the universe while gently taking the spoon and feeding him as if he were my infant son.
Two days later and still unable to feed himself, Alan was admitted to the hospital where he was given an anti-anxiety drug. He had a bad reaction to the medicine, which caused his symptoms to worsen. The irony in that was not lost on me. We endured ten agonizing hours of trauma while the drug worked its way through his system. The experience unraveled my already frayed nerves.
At home by myself late that evening, while Alan finally slept peacefully in the hospital, my inner compass steered me to the computer and demanded I document the day’s events. Still reeling from the violence of Alan’s ordeal, I did just that. I wrote:
He fusses with his blankets, tears off his hospital gown, picks at his clothes. He hallucinates. He grasps the air, peels bananas that aren’t there, asks me to pull the needles out of his legs. I go along with it all, especially making sure he understands I removed all the needles. He’s satisfied and falls asleep smiling. At last he’s at peace, and I can take a break from being with him in his dementia. But that lasts only a minute.
He wakes up, flails about like a fussy baby, arms and hands and head moving in short, jerky, out-of-control motions, his hands pulling my hair and necklace, holding on as he falls deeper into the nightmare only he experiences. He squeezes my fingers so hard that I remove my wedding ring to prevent injury. He reaches for me, misses, unintentionally grabs and bumps and punches me. He’s fighting something. Part of me wants to cry, but my crying would not make this double helix of hell easier for him, so I search my mental landscape for the thing that will make it easier. And there it is — my presence, my strength of presence. More of that, then. I’ll give him my attention and his dignity and ask that I’m gifted the power to sustain them.
Here, then, I thought, is how I can be present for Alan, myself, and this dementia. I’ll look that dastardly dementia thief in the eye and write about it throughout this journey. I’ll write everything — every sorrow, failure, disintegration, descent, every emotion of despair as well as the joy — there has to be joy hidden in there somewhere. I realized I needed to give voice to our love and suffering, our grief and loss, to light a flare for those in similar situations, to put my perceptions and knowledge into a format others could relate to as they navigate the uncharted terrain of dementia. My soul was on fire, my passion lit.
Writing was one thing, but there could be little writing without crying. And there was a lot of crying, a lot of release. This new life with Alan would take superhuman strength, and crying was my second ticket to the other side.
During my caregiving and grief process, and throughout the writing and crying, I discovered the third secret: breathing. Taking a pause, a step back, observing from a distance, as if it weren’t happening to you and your loved one, as if it were a movie. Watching space open up where there was none before, and deciding how to fill it. This was my way of breathing.
But for now, our tale was just revving up. I had the mistaken idea that I needed to write our story in novel form, but I didn’t know how to do that without having lived it through. Anxious days followed anxious thoughts before my inner compass suggested there was only one way: to write one memory at a time, exactly in the manner I wrote that first journal entry. I would commit everything I remembered to the page. I’d call it up later and copy and paste it into a semblance of an order. I’d add to it, subtract from it, and edit it into cohesiveness, something that made sense. This, I believed, would complete my personal cycle of the experience, and it might even help heal me. I had no clue at the time how much more would unfold, how much more I’d learn about myself, how much more broken I could get, or how my wounds would heal.
This drive and passion to write our memories rooted and quickened within me. It carried me through Alan’s hospital stay and the subsequent fourteen months in a nursing home. It magically flittered about in the background, like a ghost note hovering above the sacred mother drum as it beats the rhythm of our lives. Sometimes that drive shook my foundation, sometimes it soothed me. I don’t know if one can cultivate such obsession, but if I hadn’t been guided to write, I’d like to think that I would have had the sense to invite such passion to stay beside me all of my remaining days with Alan.
After finishing my first journal entry, and with the day’s trauma still rattling my core, my brain was a mush of bottled-up emotion that wanted out. I let go of all we had been through since Alan’s fall. I wept for having traveled through the dark night of the soul without a map or chart to guide us. I shed tears for having to battle monsters, demons, horrors of the heart. I howled, wailed, whimpered, sobbed. And when I finally came out the other side in the wee hours of the morning, I fell into a deep, sound slumber.
I wrote, I cried, I breathed. It was the repetition of this pattern time and again that rescued me. It protected me, liberated me, and created the space for me to grieve, the strength to thrash about with the dragons and demons, to keep on writing.
Write, cry, breathe. Repeat as often as necessary.
Because my intention was to capture my unedited memories for no one’s eyes but my own, I was free to spill them out like so much raw sewage. I vented and vomited words on the screen. I praised love and condemned it. I wrote my confusion, my bliss, my grief and gratefulness. I wrote thoughts and reflections about each day’s events and ensnared the memories from our earlier days.
What I wrote was unprocessed, so coarse that I usually cried as I wrote. It was my first therapy, my first attempt at healthy self-soothing. Writing the events of my caregiving life validated the path I had chosen — to be present for Alan. Writing the events and my feelings each day helped me maintain a strength of presence for him, to be a grounded witness, to take on and deflect as much of the pain and suffering he needed to offload, to honor and uphold our love for each other.
For example, there was the night Alan forgot I’d be late for our visit because of an earlier appointment. When I arrived, he uncharacteristically and vehemently chewed me out. Astonished, I let his verbal abuse run its course. I listened and recognized it was dementia running the show, not him. At home afterward, I wrote:
Daggers shoot from his eyes, heading toward me, hundreds of tiny daggers. I take the hit. I take all of them. They pierce my skin, my heart, stomach, lungs, and throat. I’m in great pain, but Alan’s pain is much greater. He thinks I abandoned him, that I’m gone for good, never to return. Fear, anger, and loneliness simmered in him all day. By the time I appear, he’s a pressure cooker of ugly notions soup, and when I walk into his room, the pot explodes and the fuming contents spatter all over me, burning me to a crisp. I couldn’t prevent it, but I could clean up the mess. So, Alan and I take our pain and fear out for tea. We make friends with it, and we become a big happy family of pain and fear. We hold hands, the two of us mewing like abandoned kittens, each forgiving the other, ourselves, this atrocious dementia, the universe. Finally, finally — we laugh.
I documented my bouts of frustration, jotted down recipes for healthy food meant to comfort me and how they turned out after I tried them. I transcribed dreams and nightmares from the night before. I imagined our lives as Romeo and Juliet, living in Dementiaville instead of Padua, and modeled a poem in the style of Shakespeare’s prologue to the play:
One loving household, torn apart by dementia,
In the fair Rocky Mountains, where we lay our scene,
From ancient karma break to new chaotic placenta,
Where primal love causes new love to teem.
From forth the celestial loins of opposing forces
Our two star-crossed lovers live their lives
Together but apart, alone on separate courses,
As their devotion to each other moves forward, ever strives.
The fearful path of this frightening disease,
And the continuance of its terrifying rage,
Which, but all cries and hearts nought could please,
Is now passing across this, our stage;
The which if you with patient ears attend,
What here shall miss, our toil shall strive to mend.
Each writing session tidied up my psyche and guided my search for meaning. I documented the horrors that popped up, like when Alan forgot who I was for three days. I recorded my happiness, like when Alan remembered me on the fourth day, not recalling he’d forgotten me. Writing begat more writing, more emotion, more release. In this way, I slowly built an invisible but sturdy scaffold reaching from my heart to his, my silent offering to him in his dementia.
Write, cry, breathe. Repeat as often as necessary.
As my husband’s illness progressed and for several months after his death, I’d take my laptop to a coffee shop to write. I found comfort in the change of scenery and the warm drink. I limited those sessions to an hour. That was as long as I could write before risking crying into my chai in front of strangers. When I could hold in the tears no longer, I’d pack up, drive home, and only then would I weep. Sometimes I’d cry for ten minutes, sometimes for several hours. I wept, sobbed, bawled, and blubbered until there was nothing left to release. I didn’t force it. I simply let it happen. I gave my grief and sadness sovereignty over its expression.
In the privacy and cocoon of home, I sniveled and whimpered over nothing and everything, usually each day. Once, I started to cry after I put on a CD of African and Celtic fusion music and noticed that my mood matched the music — a sad cacophony of perky pipes and flighty flutes, dastardly drones, demonic drums, galloping guitars, and wailing whistles that somehow formed the perfect background for my lament. Often, I’d sit cross-legged on the floor in front of the living room fireplace or on the loveseat overlooking the veranda and our expansive lawn, crying myself dry.
During a snowstorm late one winter night, situated at my desk in the study, comforted and protected by the overflowing bookshelves surrounding me, I struggled through the drudgery of paying bills and sorting through incessant stacks of paperwork. In frustration, I scattered the documents on the floor, lay down on them, and moved my arms and legs as if I were a child making a snow angel, crying while I did so.
And then there was the time five days before our fifth wedding anniversary when Alan told me he didn’t love me anymore and never wanted to see me again. I drove home and took to the bedroom. With the fireplace blazing, I curled up under the covers and wept like the tormented soul I was. We were apart for 18 days, until he called to tell me an angel revealed to him the absolute wrongness in his decision and that this angel advised him to bring me back into his life. I cried tears of joy to see him again.
There were occasions I’d shed tears unexpectedly, with nothing to set me off. My bawling was cathartic, but behind my weeping was a support system that had been with me from the beginning of Alan’s illness. This network of friends, professional therapists, counselors, and support groups validated the voice and urgings of my inner compass to continue crying it out.
Crying is the body’s way of releasing toxins and stress hormones, of cleansing us mentally and physically. To move forward in this wild excursion we call life, all our emotions must be experienced and expressed safely and fully. That doesn’t mean forcing the expression or experience, but it does mean surrendering to it, consenting to let it safely take us where we need to go.
Write, cry, breathe. My tears propped me up and made it possible to carry on, to keep on writing, loving, and living.
Each of my writing and crying sessions rendered my psyche empty. With teardrops spent, my heart contained only space and air. My grief had left temporarily, and my inner compass offered therapeutic activities to fill the void. It guided me to take breathers from the physical and emotional demands of writing and crying, to take respite, and to recharge.
For me, breathing was anything I enjoyed doing at any given time. Sometimes crying would exhaust me, and I’d take a nap, letting the rapid eye movements of sleep sort out the day’s events. Sometimes crying awakened contemplation, so I’d meditate, work on a painting, read, listen to music, or have a long soak in my jetted bathtub. Other times it would energize me, so I’d play my djembe drum, walk, or go for a drive. Or it would nudge me to get out in the world, so I’d visit bookstores and coffee shops, go to a movie, or hang out with friends or family.
To live my own life while Alan was in the nursing home, I inhaled deeply, and I exhaled just as intensely to live my life without him after he died. Breathing is the sacred space between release and feeling, between ending and beginning again. It’s the first ghost note of life, and of living in the joy and misery and light of our own presence.
Write, cry, breathe. If we don’t breathe, we don’t live. And life is in each breath.
Five months after Alan died, just before what would have been our sixth wedding anniversary, I finished writing a draft of the memories of our life together. The last words I wrote:
There’s nothing more to do but wait. I hold Alan’s hand, wanting to be with him forever, to walk with him, to fly away with him. Outside, it’s growing dark, quiet, calm. I’m at his side, still holding his hand, when the sun sets gracefully, exquisitely, with his last exhaled breath. At last he’s free, and I’m empty, eerily at peace.
A year after that, I finished another draft. The write-cry-breathe routine continued to work. I was on a roll. But for as much passion as I had to polish my notes further, there existed an opposing force just as determined to foil my efforts.
As I began writing again, I stalled, stuck in crying mode. I’d weep, breathe, then try to write; weep, breathe, try to write — over and over again, always with the same unproductive result. I took a stab at rewriting different journal entries, thinking I needed only a gentle push to pop the clutch and start up again, but I stalled.
My work came to a standstill as I coasted deeper into despair and depression, lost the spark of what little energy I had, and finally shut down. I landed in a darker place of grief than I’d ever been. I was broken, and I was done trying to write. I needed to breathe. I needed to play more ghost notes.
Two years passed, but even then I was unable to write. My inner compass — the same intuitive voice that lead me to Alan — lured me from our home in Colorado to the Pacific Ocean and the redwood trees of California’s North Coast. It accompanied me daily as I walked along the shore, sensed the rhythm and power of the ocean, and presented myself for renewal, begging for help. This crying was too much. I took deep breaths of air, full of sea spray and healthy negative hydrogen ions that balanced my serotonin levels and lightened my psychological load with each visit.
After a few months of wandering up and down the beaches of the North Coast, my inner compass escorted me to my laptop, sat me down, and announced I was ready to write again. And I did. This time, however, there was no need for the write-cry-breathe routine that had served me in the past. This time I wrote without weeping, mostly. I still couldn’t keep it together as I rewrote the initial scene at the hospital where Alan had a bad reaction to the anti-anxiety drug.
Still, I wrote, and I kept on writing. By then, I’d learned more about how to write our story, and I was finding my groove as a writer. I finished my notes and published related essays in literary journals and local papers. Finally in the zone, I found the neighborhood to be lovely.
Write, cry, breathe. Repeat as often as necessary. I continue to write. The crying is done. And I still breathe.
If you’re interested in purchasing your own copy of RISE: An Anthology of Change, it’s available on Amazon. Click anywhere on this sentence for the U.S. link.
You also might want to check out my ebook about my caregiving experience. The Grapes of Dementia: My Journey of Love, Loss, Surrender, and Gratitude is available worldwide through Amazon.
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