Susan M. Schultz
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In the Absence of Words

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by Beatriz Terrazas
 
Words used to come easily to me. Words to speak, words to write.
 
But now they do not come – or will not come – when I want them. When I reach for them, they move into the quiet corners of my mind, their architecture hugging the walls of thought so that I struggle to discern them, to peel them away from the shadows. Where is the word that fits the prickly shape of my grief, or, the word that echoes the hollow emptiness of my belly? Where the word that mimics the way anger floats on the surface of my days, a slick spill I cannot contain?
 
Sometimes when I turn away they come; the words and phrases materialize, as if they’ve always been there had I only chosen to look.
They murmur in my sleep: Her hair, straight as corn.
 
They tease me while I’m driving: Long ago Sundays I remember as yellow.
 
They interrupt my dinner: I am windswept streets.
 
But more often, they awaken me in the middle of the night, a tangled knot of garbled language in my throat. I lay there, sleep banished, thoughts racing, yearning for the notebook on my nightstand, but knowing that the second I reach for it, the knot will dissolve and the words will dissipate into the dark.
 
 
 
In elementary school, I recall being kept at the day’s end at least once and my mom conferring with my teacher; it seems that for a while I couldn’t stop talking long enough to do my work. As a teen I wrote sentimental poetry: I saw my funeral, my body gliding away in a hearse. As a young adult, no one could accuse me of lacking words – angry words, mean words, bitter words, gentle words, sad words, happy words, excited words, confused words, love words: Bitch, blue, rage organic, tangle, puppy, locked, cactus, sigh, bellybutton, fuck, orange, ocean, no, please, island, yes, fuzz, silver, creep, desert, lizard, volcano, shimmer, puddle, heel, brooch, here, tomorrow, gift, water, hand, border, lace, paint, sweet … ah! And on and on, a bottomless cenote whose crushed limestone continued to give up torrents of words well into my journalism career so that I could convey complex thoughts and be the voice for others. My cenote was a gift.
 
Until now. The reservoir appears to have run dry. Where it once offered up words it has become a dry, silent well. I blame it on the Alzheimer’s. My mother’s Alzheimer’s is stealing her voice and my own as well. Though I’m not sure how, or why, it’s a mystery I’m now seeking to unravel.
 
 
 
Though I can’t prove it, I’ve always sensed that any gift for words I’ve inherited came from my mother’s side of the family. Maybe I’m wrong; my paternal grandparents were long gone when I was born so I can’t know which of my genetic predispositions come from them. But I knew my maternal grandparents, and my mother’s family was expansive, and verbally and physically affectionate. When my mother was still well, she told stories about growing up in rural Durango. She was born in 1930, twenty years after Mexico’s bloody revolution began, a few years after it ended, but while its effects still reverberated through the country. When I was growing up, both sides of my family still talked about Pancho Villa and the fear and awe he inspired. As a baby my mom crawled around behind her mother while the latter did household chores, so that once, her mother turned and accidentally stepped on her hand, ripping off a tiny fingernail. It would never grow back. After that, her father nestled her inside the bib of his overalls as he worked on the ranch. My grandparents used to call each other “mi amor,” as in, “Mi amor, dinner isn’t ready yet,” and “All right, mi amor, let me know when it is ready.” When she was older, my mother and her sisters washed clothes in a river. She dreamed of being a nurse. She dreamed of being a wife and mother.
 
As a girl, one of her favorite things was to ride horses. Before we took away her wallet for safekeeping, my mother used to carry in it a tiny black and white photo of herself sitting side saddle atop a horse. But she also rode bareback. And when she visited her godfather’s house, he always offered up his best mount for her to ride. Before she got sick, she’d visit me frequently. I live in horse country, and when we went for walks she’d eye our neighbors’ horses grazing in their pastures and say, “I wish you had a horse, because if you did, I would ride it.”
 
Once, around 2009, at least a year after her diagnosis and many years after I’d incorporated these bits of history into my own, we sat around a table and my uncle Chapo asked my mom if she remembered one of the few times when their father spanked them both.
 
My mother was silent. She looked at her brother for a long moment. Well into the disease’s erosion of memory and language, this was something she might have forgotten. So, I watched, curious about what she’d say. Then she smiled shyly at him and said, “Yes.”
 
“Do you remember why he spanked us?”
 
“Because we were fighting in the garden.”
 
They both laughed. I was delighted.
 
She was the second oldest among seven brothers, four sisters and a couple of cousins who were reared by her parents as their own; I always visualized my mother as scurrying around helping care for her youngest siblings. She was so serious, so strict with my brother, sister and me that the image of her fighting with her brother – perhaps in the same way my brother and I came to blows as kids, occasionally even throwing rocks and coat hangers at each other – was lovely.
 
But, back to the words. Like her parents, my mother was not one to fear them, not afraid to say, “I love you, you are my treasure,” in front of my friends, and to my mortification, in front of the occasional boyfriend when I was old enough to date.
 
Once, she told me that her “gran anhelo,” (her greatest longing) was to be a mother. “I love you so much,” she said, unafraid of the weight of the words, unaware that her words both comforted and terrified. They felt like an omen.
 
 
 
Early in the days of my mother’s disease I wasn’t at such a loss for words. True: the diagnosis was such an upheaval that it did temporarily render me wordless. But not for long. The jolt that comes with facing a loved one’s terminal illness, as well as knowing the indignities that this particular disease would bring, loosened the words and sent them rushing out. I had so much to say. I created a blog: My mother’s brain: love in the times of dementia. Surely, there were other people who felt as I felt, people who needed to know what I was going through and who could share what their families, too, were experiencing.
 
I mined my life the way I’d mined those of others in my newspaper career. I dug deep and wrote and wrote and wrote. I jotted words of advice on self-care, support groups, the importance of Alzheimer’s education for now and the future. I linked stories I found in other media – newspapers, magazines, TV, websites, blogs. I published original essays in local and national magazines, describing how it felt to see my mother’s cognitive skills begin to slip, how it seemed that her lost memories were erasing parts of me as well, and how I was hoarding the good memories of her in an attempt to shore up strength for the days when she would bear no resemblance to the woman who reared me.
 
For several years, I reached into my cenote, and there they were in the shallows, the words I needed, ready to use. Their armature was firm and strong. There were nouns to fit every thought, verbs in the perfect tense and conjugation. I marveled at their capacity to fit themselves to my emotions and at my brain’s capacity to use them to shape ideas and stories.
 
 
 
My flow of words grew in direct proportion to my mother’s loss of language and the corrosion of words in her brain. While I blogged and published, she began to call nearly every object she needed “jacket.” At the kitchen table, searching for napkins and spying them on top of the fridge where we kept them so they wouldn’t find their way to her pockets where they had a tendency to amass so by day’s end they’d be bulging out like runaway cysts: “Can you give me one of those jackets?” she’d point at the napkin package. In the bathroom, as she discovered she’d wet her disposable underwear: “Can you bring me another jacket?” After I’d dried her hair and she searched for the purse where she kept her barrettes: “Can you bring me my jacket?”
 
By day she would wear her real jacket whether it was 100 degrees or 20 degrees. At night, it was a security blanket she wadded up and shoved deep beneath the covers, as if hoarding the napkins and barrettes and underwear that eluded her by day so that tomorrow she’d have them at hand in plentiful supply.
 
A devout Catholic, she forgot the word “church.” It became “the place we go to celebrate mass.” She forgot who I was, asking me, “Are you Angelica?” “No, Mom, I’m your other daughter, the one who lives in Dallas.” Most recently: “What do you call that?” pointing at my shirt. “And those?” pointing at my glasses. “And those?” pointing at my pants.
 
She forgot who her siblings were, and when they greeted her, demanded to know the names of their parents, as if to have proof of their blood running through her veins.
 
On one trip to my house, she forgot to bring her comb. “I need my – ” she said, and struggled to find the word that wouldn’t come. When I finally figured it out I bought her a bright purple three-pack with different styles: a wide-tooth comb, a pick, and a slim flat one for parting her hair down the middle. I counted them out for her: “Look, you have this one,” I said, and a smile broke out on her face, growing wider as I continued, “and this one, and this one.”
 
I imagined it was the same smile she wore as a child when her father placed her in the bib of his overalls, an unabashed joy at the simple pleasure of his touch. Now, the simple delight of receiving a new purple comb.
 
A smile: a different kind of language, the words of the body.
 
How long, I wondered, before her face would completely lose the ability to smile, to frown? My husband’s grandmother died of Alzheimer’s, and my mother-in-law is in the latter stages. To lose words is one thing, but I’ve seen the mask that takes over the face of someone with Alzheimer’s: it strips the bones and muscles and skin of their most primal ability to express.
 
 
Once when I was a kid, probably a teenager, I was walking through a store with my mother. She felt something bunched high up in one of her sleeves and started giggling. She worked the soft lump down the sleeve, giggling harder, until she pulled out a wayward sock that had been left in her blouse during the last wash and dry cycles. She laughed so hard she cried right there in that store aisle.
 
It bothers me that I don’t remember other specific instances of when my mother laughed really hard.
 
I almost never hear her laugh anymore.
 
 
How long, I wondered?
 
 
As she regressed, we kept her active with walks, during which she would point out flowers. “There’s a red one and another red one and another red one,” she’d say. We busied her with coloring books. “I need green,” and she’d hold up a stub of crayon. Or, “I’m done,” and she would place the crayons back in their box.
 
Sometimes, she wanted nothing more than a pair of blunt-nosed scissors and junk mail to cut into tiny shreds. She’d sit silently for hours, cutting along the straight lines of copy, sometimes curving the scissors around individual letters. The cutting obsession took such deep root that sometimes it was difficult to get her to do anything else.
 
“Mom, come to dinner,” I’d say.
 
“OK.”
 
Ten minutes later, “Mom, come to dinner. It’s getting cold.”
 
“Let me finish this,” and she would reach for another sheet to begin cutting.
 
But that activity slowed, so that not only did she talk less and smile less, she also did less.
 
 
July 12, 2011, I wrote in my blog:
 
Last week, my sister called Mom’s house to tell the caregiver she was on the way to pick them both up. The caregiver said, “Your mom went to bed already.” It was 6 p.m. The coloring books, the grocery store flyers, the scissors had been put away. My mother’s brain no longer compels her to color or snip junk mail for hours on end. When the brain says stop, she stops. Nothing more to do but sleep. When my sister told me this, dead leaves whispered beneath my feet. My heart stuttered. The days grow shorter, the tunnel we walk more narrow.
 
 
Her brain seemed to be short-circuiting.
 
 
August 2, 2011 I wrote:
 
A couple of weeks ago, my mother awakened from a nap and began counting: “Twenty four, twenty-five, twenty-six, twenty-seven, twenty-eight, twenty-nine …” I waved my hand in front of her face saying, “Mom, Mom, what are you counting?” and she would not stop, just kept looking at some invisible line of sheep or birds or trucks parading by and tallying them up aloud. It’s as if during sleep her mind reverted to a numerical code, like a computer screen gone gray and showing a series of numbers. What did these numbers mean? Did strings of them conjure up images of people or events? What happened when she stopped counting? Did the pictures in her mind fizzle abruptly like a switch going off, or did they hang there for a moment before slowly dissolving?
 
 
And then I, too, began to disappear.
 
 
My words slowed. Fatigue, I thought. It’s difficult to be a long-distance caregiver and keep abreast of each new crisis, to work and take care of things in my own home at the same time. The writing became a trickle because sometimes when I reached into my well, my hands came up empty, there were no words at all. For weeks at a time I was unable to write. More frightening still, it was difficult to find the words to simply speak. Not that I didn’t want to – but more often than not, when I wanted to say something, instead of words came sobs.
 
 
November 30, 2011
 
When during a phone conversation I tell my sister about the instances when a rogue wave wallops me, I can see her nodding across the miles. “It usually happens to me when I’m driving,” she says. That’s all she can say. Neither one of us knows how to describe these moments, though we recognize them in each other’s life.
 
 
One day last September, I was awakened by a call from my brother-in-law around 6:30 in the morning. My mother had walked out of her house, unheard by the caregiver, and the police were out looking for her.
 
What was my mother seeing? Hearing?
 
 
Maybe it was this: She felt, rather than heard, the quiet of the house. She opened the door and walked out of the gate toward the corral where the horse horse greeted her with warm snuffles. She patted its broad neck and lifted herself up. Atop the animal, his muscled back swayed beneath her. She could go anywhere. Anywhere! She eased him into a trot, and the breeze stroked her face and hair, caressed her entire body, in fact. Its fingers comforted, whispered of freedom.
 
She would ride for hours.
 
From here she could see the world.
 
 
While police, sister, caregiver and cousins hit the streets to look for a woman who’d defied locked doors and the fears and paranoia of dementia to leave her house — 30 minutes ago? an hour, two hours earlier? — I sat in my living room, the sky outside going from deep indigo to dark gray.
 
What do you do when your mother could be lying in a dark gutter with a leg or foot broken, or trying to cross the nearby highway, or stepping out of the shadows and in front of a car? Heart pounding, I began dismantling the day’s plans so that I could catch a flight, or drive 600 miles home, or have an emotional breakdown and plan a funeral if needed. Muted, I could only picture the worst: the tears, the trip home, the photo story I owed to an editor. Hundreds of contacts in my cell phone directory, and not one I could think to call. A writer, mouth agape and not one word I could think to utter.
 
I thought of the poet Julia Alvarez that morning. I’d recently heard her talk about the darkness in the world today. She said — and I’m paraphrasing here — that when events occur that affect human beings on a large scale, we can be rendered mute with horror. A tiny woman, she mimed this, mouth opened wide in silence, hand at her chest. At these times of great stress or tragedy, we stand slack-jawed, our voices ripped from us by shock. Then the poets step up; metaphor by metaphor, image by image, they begin the job of witnessing, she said. After that, the prose writers come, laying out the stories and filling in the details.
 
Now, I truly understood what she’d said.
 
My body was a continent jolted by a giant earthquake, and my voice lacked the words to describe the magnitude of the tremor or the way it had ripped the landscape of my life. Oh, how I needed a poet. I needed to be handed words with which to stitch together a shawl that would shelter me as the sun rose and revealed what night had hidden, where my mother had gone, and whether or not she was safe.
 
 
The found my mother in the next-door neighbor’s Jeep, which had been left unlocked. She had donned a shirt as pants, wedging her legs into the too-short sleeves, and walked out to the street where the Jeep beckoned. It’s a tall vehicle, its doors at least a couple of feet above the ground. Dressed as she was, no one could figure out how she managed to climb into it. From her high perch, she could see everything around her, and she watched as people walked up and down the street looking for her.
 
Then one of them saw her and came over and opened the car’s door.
 
 
Even after she’d been found, my words seemed to be permanently lost. The holidays approached. Friends made plans to see family; they spoke of turkey dinners, of football and of travel plans. I, on the other hand, was quiet.
 
When I saw acquaintances at meetings or in the supermarket, I wanted to say, “Happy Thanksgiving,” and mean it. But something new had occurred.
 
My lungs were so clotted with the broken bones of unspoken and unwritten words – whole letters, stems, poles, loops and the odd comma – that I was unable to speak. Their shattered bodies bottlenecked in my throat, jagged pieces piercing the skin of my mouth and lodging there, the detritus of failed communication: g, lo, b, h, yo. r! m! j!
 
I tried, then, to gather their remains and put them back together with the simple glue of intent and commit them to the page. But my fingers in their eagerness, usually nimble and swift over the keyboard, were so gorged with bits of words they felt like bloated grapes and couldn’t move. How to put down the words when your hands are so full of them you can’t pick out each individual black frame to lay it out against the white?
 
It occurred to me that this must be what it’s like for my mother, her brain reaching for letters that resist being strung together to create proper words, for words that refuse to be corralled into proper sentences. Perhaps she thinks a word, only to have it break apart before she can say it, constructs a sentence only to have objects and nouns disappear from her tongue so that she is left with “Give me,” or “I need.”
 
 
So I quit, stopped looking for words. For the moment, it was just too difficult to search for something that seemed to have disappeared completely. And in that quiet filled with broken words, I found something else. Call it a revelation:
 
 
Grief.
 
 
Grief had stolen my voice. I have been grieving for years; I’ve been mourning my mother since the doctor said the word “Alzheimer’s.” And grief can break language. The more you try to paint or lasso or etch or pin down grief, the more it will defy you, and the more it will rob you of the words you need to say or to write the experience. Because grief is unspeakable, its depths not fully knowable until the darkness presses on your chest and your toes search for bottom. It is that sea into which we mourners all sink surrounded by the fragments of words we cannot say. It is that sea that begs us to succumb and allow ourselves to fully drown in order to be reborn into the life without: the life without the mourned loved one. Anything less and we will never recover our voice. Anything less, and we will not be saved. In my case, I was reaching into my well looking for language when I found I’d fallen into that sea of grief. And the sea in which I’m treading water eerily mimics the ocean of my mother’s brain where dementia has taken hold and is eroding her ability to communicate. More often than not, my mother and I are both at a loss for words.
 
 
One day I was driving her back home from somewhere, a doctor’s appointment perhaps, when the tears suddenly forced their way past my lashes and down my face. We were at the stage where more and more my mother’s face was a blank slate. To see me frustrated over misplacing car keys, or to see me laughing at some joke, usually brought nothing more than a fleeting curiosity to her face. But now, she turned and saw me crying, and very gently leaned over and kissed me on the cheek, once, twice, pressing her lips against my tears. I took it as another lesson in language; in the absence of words there is another way to speak. The language of the body is a more primitive expression of the heart. It’s a language I’m trying to re-learn.
 
 
 
In December, I spend Christmas with my mother. She is most functional in the morning, and she awakens as the light filters through her bedroom blinds. From my room, I hear her speak to the doll she has tucked in beside her, “Are you cold?” And to a photo on the wall: “You’re so pretty. I don’t know your name but you’re so pretty.”
 
I slip out of bed and walk to her room. She peers at me over the covers. The words in my throat loosen just a bit and I say, “Hello little bird. Did you sleep well?” As I reach for her I smile, let my face and body speak. “See?” my hands say on her face. “See me? I love you. I am here.”
 
 
 
__________________________________________________________________________
 
Beatriz Terrazas is a writer and photographer based in Texas. She’s a regular contributor to The Dallas Morning News and to the blog www.mamiverse.com. She has also been a contributor to The Texas Observer, The Progressive Media Project, and her work has appeared in More, D, Skirt! and The Washington Post. She is among the writers anthologized in TCU Press’s Literary El Paso. Terrazas was part of The Dallas Morning News team that won the Pulitzer Prize in 1994 for a series titled Violence Against Women: A Question of Human Rights. She has also won first place in the American Society of Sunday and Features Editors contest and the Gold in the Society of American Travel Writers Lowell Thomas Awards. Her essay My Mother’s Brain, a story about caring for her Alzheimer’s-afflicted mother, won first place in the American Society of Journalists and Authors (ASJA) in 2011. Terrazas is a repeat instructor at the Highland Park Literary Festival and is frequently tapped to lead writing workshops for the likes of UNT’s Mayborn Literary Nonfiction Conference and the upcoming DFW Writers Conference. She’s a member of ASJA, the Macondo Writer’s Workshop, and a Harvard University Nieman Fellow, class of 1999. She blogs about caring for her mother at www.mymothersbrain.wordpress.com.

8 Responses to In the Absence of Words

  1. Julianne McCullagh August 16, 2012 at 5:14 pm

    Beautiful. The way you describe your own search for words in the face of such silence, well, I see my own mother’s face as she reached but too often could not grasp, the words that once flowed so easily, so gracefully, from her. When words are gone, hopefully, we can still have touch and the deep well of memory to fill the silence. Thank you for this heartbreaking piece. Thank you.

    Reply
  2. Terry Wilson August 17, 2012 at 9:24 am

    This is a gorgeous essay. My Mom is almost 95 and has had Alzheimer’s for about 14 yrs. Each year that goes by, she loses more words, more abilities. Yet when I get physically close to her and kiss her cheek, her forehead, she seems to understand that I love her though she can’t remember who I am anymore. Now we are just two beings on the planet and words are not always needed. Thank you for writing your piece and giving voice to all who suffer with this disease of loss and then more loss.

    Reply
  3. mymothersbrain August 20, 2012 at 2:17 am

    Thank you Juli and Terry, for affirming that I am not alone on this journey. – Beatriz

    Reply
  4. Michael August 29, 2012 at 2:30 am

    In a fit of serendipity, a wonderful friend forwarded a link to your essay today. It found me at a perfect moment, splitting me open in ways that I’ve been denying myself for a few months now. For that profound gift, and for the gift of your cenote, thank you.

    Reply
  5. LunaJune September 1, 2012 at 3:29 pm

    Thank you to Michael for sharing this link… thank you for sharing your words ” Because grief is unspeakable, its depths not fully knowable until the darkness presses on your chest and your toes search for bottom. ”
    I lost my mother fast.. actually overnight… she had been in poor health for many years but never, not there. My heart breaks when I read and talk to friends who have had to deal with dementia.

    Reply
  6. mymothersbrain September 10, 2012 at 4:18 pm

    Thank you to both Michael and Luna — this is a tough journey any way you look at it. Some days I feel the pain rise within me and it wants to spill out in sobs but I have to hold it back because I fear it will render me unable to function.

    Reply
  7. Jayne MacDonald April 5, 2013 at 5:50 am

    I work with Hospice and visit many facilities with dementia patients
    I have found that music is a wonderful tool in reaching patients
    watching people come alive tapping toes and singing songs
    it’s so very beautiful to both witness and to be a part of the magic.

    Reply
  8. Pingback: “If I didn’t write it down, it’s shhhhh”: On Writing Dementia. Edited by Susan M. Schultz | EOAGH

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