JOIN/UNJOIN:
A HEARING SON’S JOURNEY
TO FIND THE DEAF MOTHER HE ALMOST KNEW
by
JESSE EDWARD HARRIS
THESIS
Presented to the Faculty of the
Honors College
The University of Texas at San Antonio
In Partial Fulfillment
Of the Requirements
For the Degree of
BACHELOR OF ARTS IN ANTHROPOLOGY
WITH HIGHEST HONORS IN THE HONORS COLLEGE
THE UNIVERSITY OF TEXAS AT SAN ANTONIO
College of Liberal & Fine Arts
Department of Anthropology
December 2013
i
JOINNNJOIN:
A HEARING SON'S JOURNEY
TO FIND THE MOTHER HE ALMOST KNEW
n
PREPARED BY:
V
Jesse Edward Harris
PROVED BY:
Accepted:
Richard Diem, Ph.D., Dean of the Honors College
Received by the Honors College:
nrC
ABSTRACT
JOIN/UNJOIN:
A HEARING SON’S JOURNEY
TO FIND THE DEAF MOTHER HE ALMOST KNEW
Jesse Edward Harris, B.A.
The University of Texas at San Antonio, 2013
Supervising Professor: John Phillip Santos, M.A. Oxon.
This book began as a collection of short stories for an Honors nonfiction writing seminar.
What started as a menagerie of essays about my mother’s Deafness, struggle with alcoholism and
drug addiction, and eventual battle with end-stage liver disease, slowly grew into a narrative
about a hearing son’s search for identity and belonging between two worlds, Deaf and Hearing,
each one comfortably foreign. At its core, this narrative is an attempt to collapse disordered
binaries: mother and son, hearing and deaf, living and dying, united and estranged. The book’s
title, Join-Unjoin, is an American Sign Language translation, or gloss, for the breaking of a
relationship.
Contained within this memoir are two storylines intertwined an often at odds, a
juxtaposition that has been the defining thread which runs through my life. In the first storyline,
the reader is introduced to a fascinating world of culture within culture, told through my
experience as a hearing child of Deaf adults (CoDA) growing up in the “Deaf-World.” As the
narrative continues through childhood and adolescence, the relationship with my parents and
their world of silence unravels – Unjoin – into an estranged life of drugs, alcohol and
abandonment.
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Alternating chapters unfold along a second, later timeline at Doris’ hospital bedside as
she battles for life awaiting a liver transplant. As her condition deteriorates, I – her only son and
lone connection to the Hearing-World of doctors, life-saving technology, and her estranged
family – am fighting my own battle in trying to reconcile the nature of our relationship and our
role in each other’s lives, and what it means to be truly “Joined.”
The book is influenced by American Sign Language (ASL) grammar and English
neologisms –such as bangbangbang – to create a world that is equally familiar and foreign,
poetic and bristly. In keeping with my academic training in Anthropology, it calls upon the
traditions of participant observation and autoethnography to bridge gaps between readers and a
world so few even know exists.
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TABLE OF CONTENTS
TITLE PAGE .................................................................................................................................................. i
SIGNATURE PAGE ..................................................................................................................................... ii
ABSTRACT .................................................................................................................................................. iii
TABLE OF CONTENTS .............................................................................................................................. v
ACKNOWLEGEMENTS ............................................................................................................................ vi
BOOK PROPOSAL ...................................................................................................................................... 1
I. Background .................................................................................................................................... 1
II. Book Structure .............................................................................................................................. 3
III. Style & Themes ........................................................................................................................... 4
IV. Literary Tradition ........................................................................................................................ 6
BIBLIOGRAPHY.......................................................................................................................................... 8
CREATIVE THESIS................................................................................................................................... 10
Prologue: End .................................................................................................................................. 12
Chapter 1: Rockwell ........................................................................................................................ 17
Chapter 2: Decide ............................................................................................................................ 28
Chapter 3: Interpreter ...................................................................................................................... 36
Chapter 4: Worse............................................................................................................................. 43
Chapter 5: Better ............................................................................................................................. 47
Chapter 6: Conditions ..................................................................................................................... 52
Chapter 7: Split ............................................................................................................................... 61
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ACKNOWLEDGEMENTS
My mother didn’t graduate high school, bore a child she couldn’t raise, and struggled
with a lifetime of addiction. But she also smiled in a way that communicated more than her voice
or hands ever could, gave hugs so hard you’d swear she cracked a rib, and wanted – so
desperately – to live to see her grandchildren. My mother was far from perfect, but exactly what
I needed – and her death still teaches me how to live. What greater gift could a mother give?
Hope you proud, sweet Mom-Mom. Think-positive.
I am forever grateful to the Deaf Community, whose language, culture, and passion keeps
the beat in the rhythm of my soul. I cannot hope to write their story, but I am so proud that it is
such a big part of mine.
This journey has been one of serendipity and discovery, and I’ve been blessed with a
remarkable guide and partner along the road in the form of my thesis advisor, John Phillip
Santos. I also wish to thank my readers, Sheila Black and Dr. Ann Eisenberg, for investing in my
education. I will spend the rest of my life to ensure the dividends of their work are reinvested in
others.
Finally, to my husband, Derek: In your heart, I found a love I didn’t think I deserved.
You teach me of selfless love, and in caring for Mom and me you helped us both heal. For this
gift, I can never repay you. I would not – could not – without you.
I am the luckiest.
May 2013
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BOOK PROPOSAL
“’Until you let me be an "I," the way you are, you can never come inside my silence and know me.
And I won't let myself know you. Until that time, we can't be like this … joined.”
– Sarah Norman in Mark Medoff’s Children of a Lesser God
In the summer of 2008, I began a path toward reconciliation with my Deaf mother, who
had been diagnosed with end-stage liver disease and a litany of life-threatening medical
complications. At age 59, a lifetime of drinking and drug abuse not only ravaged Mom’s body,
but in the preceding 30 years, it also robbed her of an opportunity to raise her only child.
My mother’s disability contributed to a strained relationship with her hearing parents and
brothers, her lack of a true language until age 5, and her life-long struggle with substance abuse.
Yet the root cause of her inability to care for herself – or for me – wasn’t her deafness, but rather
an inherent isolation brought about by her alienation from the “Hearing-World.”
This book seeks to illuminate this world by juxtaposing linguistic, cultural, familial, and
other dimensions of the Deaf-World with those more familiar to its mostly hearing audience.
This is accomplished by interrogating the grey areas of seemingly binary relationships – hearing
and deaf, spoken and signed, mother and stranger, join and unjoin. By doing so, I implore the
reader to question the nature of the greyness, and the rigid black and white absolutes on either
side.
I. Background
Three days after giving birth, Doris Nell Hileman left her only child with her hearing
parents so she could join her friends for a party 200 miles away in Dallas, Texas. That
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debaucherous weekend trip would serve as the first episode in her lifelong struggle to stay sober,
regain custody of her son, and manage a life that had spun wildly out of control.
This book is a reflection on my emotional journey and struggle to find the common
thread that links me to the mother I would only begin to know in the last three years of her life.
Upon her liver disease diagnosis, shortly before my 27th birthday and after a lifetime of alienation
and resentment, I begrudgingly agreed to assist with her aftercare, believing myself to be her
only remaining link to the Hearing-World of doctors, hospitals and government assistance that
could help prolong her life. What I unexpectedly uncovered along the way were the distilled
central traits that unite me with “Mom-Mom” and that allowed for a kind of reconciliation before
her death: Unyielding optimism in the face of utter hopelessness, a shared battle with alienation
and addiction, and a common struggle to navigate the borderlands of the Hearing- and DeafWorlds.
By juxtaposing our prolonged estrangement throughout my childhood with our intense
closeness in her final hours of life, I hope to challenge the nature of the reader’s own essential
relationships. My mother was a supporting actress in the story of my childhood, it seemed, only
appearing to stir up old battles or explode with drunken emotions. This underscores the irony of
our relationship later in life where I served in the parent role, ensuring she made it to doctors’
appointments, ate the right foods, paid bills on time, and remained emotionally healthy. Through
the book, the reader must question his or her own conceptions – or misconceptions – about the
archetypes for mother and son, hearing and deaf, nature and nurture, hopeless despair and
unrestrained joy.
It was Doris’ addiction that pushed her away from her only child and caused her untimely
death. Paradoxically, her terminal illness allowed our relationship to heal and for an
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unconventional mother-son connection to grow. It was her inability to stay sober for the majority
of my life that forced me to look at my own demons and seek sobriety, sparing myself the same
fate and finding redemption and meaning in her death. It was in her dying that I began to live.
II. Book Structure
This book journeys through two timelines in alternating chapters. The first storyline
recounts my childhood and adolescence and the widening distance in my relationship with
“Mom-Mom.” A second storyline, offered in alternating chapters, details the final days of Doris’
life, as she struggles to hold on until the liver transplant that would prolong her life can be
arranged.
The first storyline – Unjoin – features key moments in our shared and individual lives
that question conventional ideas of “mother” and “son”: Drunken confessions of family secrets
shared too soon, hurtful remarks passed from mother to daughter to son, and second chances for
parents to get things right. These stories have been taken from the first 26 years of our
relationship, before our final attempt at reconciliation, and reveal a slow unraveling of the fabric
of our family. This childhood storyline also offers cultural, linguistic, and historical insight into
the Deaf-World that framed our relationship and our lives.
Alternating chapters in the second storyline – Join – provide the rising action for the
book, telling the story of the last 3 years of our relationship as Mom battled terminal liver disease
and the consequences of her choices. It begins as Doris slips into dementia, brought about by
increased sodium and ammonia levels in her blood, just shy of the final evaluation that will place
her on the organ recipient list.
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With the exception of the prologue, which is told in third-person, the narrative style is
first-person recollection and the genre follows the tradition of memoir and autoethnography. This
anthology of scenes is woven together by the common storyline of Doris’ terminal illness and
our parallel journeys toward reconciliation and recovery. The book speaks to larger societal and
cultural questions of the impacts of addiction, deafness, poverty, and illness and how these relate
to the fundamental parent-child relationship.
Since the book opens in medias res, as Doris lay dying, the unconventional force that
propels the story to its conclusion is the reader’s journey to reconcile the alienation of the
author’s childhood with their inexplicable closeness at her death, facts that are revealed in the
opening chapters.
The book’s title, Join/Unjoin is a translation, or gloss, of the compound ASL handsign
“JOIN-UNJOIN” which means to break a relationship or cut off ties. The title speaks to the
central questions of the book: What causes this rip in the parent-child relationship, one of the
most essential in life? Can true reconciliation be achieved after nearly three decades spent in old
patterns of resentment and alienation? Most importantly for me as a writer is to dispatch a
challenge to the reader to find his or her own answer to these questions: What is total
reconciliation and is it ever possible after a rip in the fabric of a crucial relationship?
III. Style & Themes
The spirit of the book is reflective and redemptive – moments of humorous detail of life
in the Deaf-World suspended within a larger tragic storyline of drug and alcohol abuse, terminal
illness, and wasted decades. Two distinct tones emerge: The childhood storyline evokes my
sense of increasing frustration and mounting loss. The tone of the reconciliation story vacillates
4
between resentful obligation and awkward stewardship. The unquestioning sense of duty that I
carried from childhood is lifted by book’s end, and in its place grows a profound sense of hope.
This change in attitude and action comes shortly after I am told of Mom’s terminal
condition brought about by a lifetime of addiction. This event came at a crucial moment in my
life when, at age 26, I was dealing with the fallout of my own alcoholism, despite a lifetime of
pledges to “never be like her.” The wreckage of my own drinking begins to mount, first as the
high school salutatorian kicked out of college, and later living amid flies and filth when my
electricity was shut off and car repossessed. It is in this chaos that I first blame, and later accept,
the circumstances of our lives that made having “normal” mother-son relationship all but
impossible. Among these factors are the doctors’ insistence the Doris’ parents not learn ASL so
she could learn to speak, her parents’ guilt that she misinterpreted as shame, and the biological
predisposition toward addiction that ensnared generations of our ancestors. For the first time, I
felt able to bridge the Hearing- and Deaf-Worlds and see the catalog of cultural, linguistic, and
familial disconnects that had been mislabeled for decades as shameful transgressions. This rip in
the Hearing-Deaf binary was the fountain from which my healing sprang.
Neologisms, such as bangbangbang and bendingtwistingbreak have been used to achieve
two functions. First, as a literary convention popularized by e.e. cummings, they establish the
reader in a familiar yet uncomfortable place, in much the same way the Deaf-World is framed
simultaneously as familiar and yet foreign in early chapters. Additionally, this compounding
feature of language is commonly used by American Sign Language users, smashing two ideas
together to form complex Deaf idioms. As an example, “TRAIN-GO” is a compound sign that
means an idea has left, literally that “the train has left the station.” These neologisms are most
5
prominent in the chapters that deal with the earliest part of my life and the period after our
reconciliation, the times I was most connected to the Deaf-World.
The approach to representing different languages – Spoken English, ASL, Signed
English, spoken and signed language, and the various other permutations – must be simple so as
to not distract from the story. Conversations in American Sign Language – which will be used
sparingly and only to highlight linguistic isolation or novelty – are in UPCASE, following in the
conventional tradition established in similar academic and literary works. The function of this
multiplicity of language is to highlight unique features of ASL – which features syntax more
closely linked to French than English – without alienating the reader any time a conversation
occurs outside of conventional English. This is particularly illustrated in chapters that highlight
the limitations of Mom’s language in the Hearing-World. Simply rendering this in translated
English glosses would be counterproductive to the function of language in this chapter.
IV. Literary Tradition
This book draws upon a broad literary tradition. As a memoir on a hearing child of Deaf
parents, it rests on the shoulders of works such as Hands of My Father by Myron Uhlberg and
Mother Father Deaf: Living Between Sound and Silence by Paul Preston. These works, in turn,
relied upon the success of works from Deaf authors about their experiences, such as Deaf in
America by Carol Padden, A Journey into the Deaf-World by Harlan Lane et al., Deaf Like Me
by Thomas Spradley, and Arden Neisser.
The work also follows in the tradition of the musical The Last Five Years in its approach
to holistic storytelling and Nothing Happened and Then it Did, by Jake Silverstein, in its use of
alternating chapters to different ends. In preparing for this book, I was also moved by the
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introspective, interrogative style of Joan Didion’s The Year of Magical Thinking and the honest,
moving prose of Mary Karr’s Lit and Liar’s Club.
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BIBLIOGRAPHY
The following works have contributed to the development of my thesis and to a deeper
understanding of the themes of Deafness, grief, recovery, dying, and storytelling:
Alcoholics Anonymous World Services. Alcoholics Anonymous, 4th Edition. New York:
Alcoholics Anonymous World Services, 2001. Print.
Ashforth, Adam. Madumo: A Man Bewitched. Chicago: University of Chicago, 2005. Print.
Bowden, Charles, and Alice Leora Briggs. Dreamland: The Way out of Juárez. Austin:
University of Texas, 2010. Print.
Beckett, Samuel. Krapp's Last Tape, and Other Dramatic Pieces. New York: Grove, 1970. Print.
Didion, Joan. The Year of Magical Thinking. New York: A.A. Knopf, 2005. Print.
Elliott, Stephen. The Adderall Diaries: A Memoir of Moods, Masochism, and Murder. Saint
Paul, MN: Graywolf, 2009. Print.
Flynn, Nick. Another Bullshit Night in Suck City: A Memoir. New York: W.W. Norton &, 2004.
Print.
Gray, Spalding. Swimming to Cambodia: The Collected Works of Spalding Gray. London: Pan,
1987. Print.
Hemingway, Ernest. A Movable Feast. London: Jonathan Cape, 1964. Print.
Jackson, Laura (Riding). The Telling. New York: Harper & Row, 1973. Print.
Karr, Mary. Lit. N.p.: HarperCollins, 2009. Print.
Karr, Mary. The Liars' Club: A Memoir. New York: Viking, 1995. Print.
Lane, Harlan L., Robert Hoffmeister, and Benjamin J. Bahan. A Journey into the Deaf-World.
San Diego, CA: DawnSignPress, 1996. Print.
8
Neufeld, Josh. A.D.: New Orleans after the Deluge. New York: Pantheon, 2009. Print.
Padden, Carol, and Tom Humphries. Deaf in America: Voices from a Culture. Cambridge, MA:
Harvard University Press, 1988. Print.
Parker, Pearson Michael. The Archaeology of Death and Burial. College Station: Texas A&M
University Press, 2000. Print.
Preston, Paul. Mother Father Deaf: Living between Sound and Silence. Cambridge, MA:
Harvard University Press, 1994. Print.
Santos, John Phillip. Places Left Unfinished at the Time of Creation. New York: Penguin, 2000.
Print.
Schroeder, Andreas. Shaking It Rough: A Prison Memoir. Toronto: Doubleday Canada, 1976.
Print.
Shields, David. Reality Hunger: A Manifesto. New York: Alfred A. Knopf, 2010. Print.
Silverstein, Jake. Nothing Happened and Then It Did: A Chronicle in Fact and Fiction. New
York: W. W. Norton &, 2010. Print.
Spradley, Thomas S., and James P. Spradley. Deaf like Me. New York: Random House, 1978.
Print.
The Last Five Years. By Jason R. Brown. Dir. Chris Berry. Brauntex Theatre, New Braunfels. 7
January 2011. Performance.
Uhlberg, Myron. Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of
Love. New York: Bantam, 2009. Print.
Wolfe, Tom. The Electric Kool-aid Acid Test. New York: Bantam, 1999. Print.
Urrea, Luis Alberto. Across the Wire: Life and Hard times on the Mexican Border. New York:
Anchor, 1993. Print.
9
CREATIVE THESIS
A Hearing Son’s Journey
to Find the Mother he Almost Knew
By Jesse Harris
10
“As adults, we try to develop the character traits that would have rescued our parents.” – Alain de Botton 11
PROLOGUE: End
He is angry and he is exhausted and he is finished drinking ice water, thankyouverymuch,
and he is feeling the drycry pain for when tears stop coming and he is wondering what is taking
Mom so long to die and he is feeling ashamed.
He is alone and he sits and he stands and he paces around the bed in a reverse L formation
and he counts his steps backandforthandbackandforth to see if their number changes and he is
tired of the chair and he is tired of the room and he is tired of the tinny smell of iodine and of
cleaning solution and he cannot get comfortable.
He is meekly waving away nurses who ask what they can bring what they can get what
they can do until more family comes to be with her.
And he is unbothered and a little proud that they are again alone.
As, it seemed, they always had been.
He is sitting and standing and pacing and counting and he is wearing daysdirty jeans and a
tearsoaked shirt that reeks of unshowered embarrassment.
He watches her face and he watches the screens and he watches the iron lung that keeps
her breathing.
And he is stalking a fly that has roused with the rising sun that now buzzbuzzsmacks
against a glaring pane of windowglass and he is imagining how it climbed twelve stories and into
the protected ICU and he is watching it weaken with each collision thirtytwothirtythreethirtyfour
and he is watching it slow and he is watching it stop.
And he is certain it, too, will die before the day is out.
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He is voicelessly counting his steps on tightclenched hands and he is an endless loop of
leftcheektwitching and reverse L pacing and he is politely disinterested in what the doctors
clergy nurses have to say now and he is hearing them at the end of the hall as they talk about low
sodium levels as they talk about organ shutdown as they talk about living wills as they talk about
asphyxiation.
He is waiting.
His thoughts are only interrupted by the taptaptap of family friends strangers on the
sliding glass door and he is tired of answering, “Are you OK?” and he is tired of parroting “Are
you OK?”
And he wants only to be held by the two arms in the room that will never hold him again.
He is calculating the number of seating combinations for the four visitors and three chairs
they share and he is making small talk with an uncle and aunt he hasn’t related to since
childhood and he is wishing things hadn’t unraveled when Grandma died and he is thinking of so
many Christmases ago when they were a family without Mom.
And he is wishing she could have been part of that family.
He watches as the sun throws orange sparks across the sterile cotton blanket that is her
shroud.
He takes a deep breath just before his mind dives back under the water of worry that
flooded his brain with a 1 a.m. phone call:
“It’s time.”
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He is thinking about her childhood and he is thinking about his childhood and he is staring
at her quivering mouthcorners and he is watching the monitors that beepbeepbeep every time her
pulse drops a little bit further.
And he is bargaining with any god who will listen and he is trusting the Universe’s
wisdom and reserving a thimblefull of doubt.
He is telling her she can go now and he is telling her it’s OK.
And he is almost believing it for himself.
You can go now. It’s OK.
He is saying the words to himself. For himself.
It is soon.
He is feeling her puffy hand getting colder and he is seeing the skin stretch tight and he is
seeing liver spots expanding and blurring out of focus and he is looking at his own hands for
reassurance.
His head is spinning twelve stories in the sky and he will miss telling her about the new
babies he saw on floor 5 and the sweet old woman whose sweet old husband is finally going
back home and the interminable Texas summer that has passed her by these last five weeks.
The fly’s buzzbuzz has slowed and its half-hearted smack against the window belies its
every biological instinct to survive.
Survive.
He silently says the word overandoverandover, so many times seen it written in his head
that the word has started to lose its form and he second-guesses its spelling and then its meaning.
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Their moment is broken by the scent of her sister-in-law’s smoky sandalwood perfume
and he is instinctively defensive that they cannot be alone and he is secretly relieved that they
cannot be alone.
And they will not be alone together ever again.
In this world.
He is praying with ministers he has never met and family he has unrecently known and he
feels her soul warming the room and the rejoined family circling in prayer above her.
A nurse and the now-silent fly confirm what he has known is coming.
For years.
He is thinking about life without her.
And he is thinking about life without her.
And he is thinking about how he will never feel her fourfootelevenhead resting under his
fivefootninechin as they stand in her smoky apartment hallway.
And he is thinking about her tortured body and he is thinking about her suffering and he is
thinking about redemption and he is thinking about the grandkids she will never know and he is
thinking about life without her.
He is thinking about life without her and he is thinking about the three decades they didn’t
speak and he is feeling guilty for what could have been.
And he is rubbing her fluidswollen hand and he is swearing that he will neverdrinklikeher
again.
15
And he is feeling the eyesting again.
And he is feeling the lefttwitchtwitch.
And he is feeling his soul bendtwistingbreak.
And he is done being the fuckingstrong one.
And she is letting go.
And he is letting go.
And she is gone.
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CHAPTER 1: Rockwell
Their Deafness was loud.
Our screaming television harmonized nightly with the shrieking kettle that Mom used to
brew and forget her tea. Sports watch timers kept the tempo like unattended IV machines. Mom
was the conductor of this not-so-silent symphony, Dad its concertmaster.
Their orchestra of Deaf friends arrived in ones and twos before gently settling – 8, 10,
now 12 – into a space intended for 4. When friends talked over each other, they smacked forearm
with wrist in an unpretty pileup of limbs. I was the only hearing member of the evening’s
ensemble and usually took the seat assigned to the third-chair tubaist, cross-legged under the
table.
Our barebones apartment overflowed with loud hand-slapping and guttural noises and
unnatural silences in the middle of stories that are like the eye of a Deaf storm. Dad was close to
silent when he signed, but Mom and many of her friends from grade school loved the way that
sounds tickled their throats.
A signed “That Fred Maxwell is cheating on his wife I know it!” was accompanied by
vocalizations, more ungags and aoooolls than attempts at English words. The vowel-heavy
sounds were unbound by any notions of normal pitch or amplification. Their free voices – in
alternating heavy sharps and dominant flats – these were the soundtrack of my childhood.
Not all of them spoke. In fact, many of my parents’ friends, painfully aware of my
outsider-ness, clenched their vocal cords when I was in earshot. Johnny, clad in a black leather
jacket so dark it trapped light, accented tales of his adventures in the Austin Deaf Harley Club
with trills of aspirated consonants unfitting his tall linebacker frame. I remember laughing at his
17
voice. It reminded me of Chewbacca with a head cold, a gravelly trill starting deep in his
stomach that exited over tightstrung vocal cords.
Tonight, the group was inspired by stories of how they came to the Texas School for the
Deaf so many years ago; for many it was their first memories of childhood. One by one they
shared their stories while the Deaf Greek chorus interjected background approval and
exaggeration.
Hands flying and pitch soaring then crashing, Mom held court over an audience that
digested each. and. every. word. While her body played out how she heard so-and-so had been
caught doing such-and-such, her feet stamped a tango beat and her Deafsong arced into the air
with a tail of sparkling detail. Mom’s voice was beautiful – she could speak with a clarity that
made her understandable over phone lines. Her wordless vocalizations gilded already beautiful
handsigns and three-dimensional phrases. Her laugh started at the bridge of her nose and only
dropped as her tiny lungs paused for air.
The bangbangbang played an offbeat rhythm to the delight of the crowd. From my
vantage point under the kitchen table, the overhead card game was a never-ending drumroll, as
people banged tight fits onto my corrugated wood roof to emphasize a point or grab the attention
of a friend whose hand was on the table but looking away.
Their inability to hear and the culture that sprung up from their shared language and
experience unifies them, but they do not consider themselves handicapped. They may need
occasional accommodations – flashing alarm clocks, vibrating couch speakers – but they are not
disabled.
Another box of laminated multicolored playing cards was opened and combined with the
stack already three sets deep. Where hearing people rules demanded a cry of “Uno!” when one
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card was left in hand, our Deaf musicmakers demanded a more percussive thwak.
This bangbangbang was a triplet of bass notes on the wood above my head. Ice in glasses
clinked and settled, as did the tempers of those left with multiple cards in their hands at the end
of a round.
A bright light silently blinked onoffon in the corner of the room. It was attached via a 20foot wire to the makeshift doorbell taped and later superglued to the doorframe of the tiny one
bedroom apartment. More friends had made it over from a Saturday night party at the Deaf club
across town. It was nearing midnight and we were just entering our second movement.
Their Deaf instruments were smacking signed words on hands and swelling laughter that
suspended discordant harmonies in the air. Hearing aids in the 1980s were distinct instruments, a
finely tuned assembly of notes that perfectly rattled a 5-year-old’s brains. The little
hearingboxes, meant to help their owners capture rough sounds that would otherwise miss them
completely, occasionally turned on their masters, resulting in sharp and high-pitched squeals that
brought the Deaf and Hearing Worlds to a halt.
EEEEeeeeeEEEoooOOooo.
WeeeeEEEaaAAAhhh.
OOOOOooooooooAAAOOOoooo.
In our house, farts accented conversation like staccato tympani notes. The not-so-silent
vibrations provided no source of embarrassment for our Deaf visitors, so long as a strange facial
expression or an unpleasant smell didn’t draw attention. But a hearing foreigner’s laughter drew
unwanted attention to an otherwise overlooked part of Deaf life, and Mom got on to me early for
making her friends uncomfortable. The apartment’s built-in hamper served as a safe house for
my unavoidable giggle fits.
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I was slowly learning the rules of the Deaf-World: We banged on tables to get others’
attention. Flashing lights signaled someone’s arrival. We celebrated the music of Deaf voices.
We laughed at the smell of broken wind, but not the sound.
I was in their world and of their world and not.
• • •
Yes, they had lost their hearing, but they didn’t lose their sound.
Much more than their silence, it was their noisiness that became so central to my
experience in the Deaf-World.
Dad listened to Michael Jackson’s Bad the way everybody else did in 1987 – so loud
from our turntable that it rolled over him like ocean waves. The notes ran together like melted
candle wax, but in his chest the beats were individual sparks that combined to ignite a rhythmic
fire that blazed through his veins.
Mom had a different appreciation for music. She loved to belt out songs to which she
knew neither the lyrics or the tune, sing-signing in an off-beat rhythm, “I want to walk like
Egyptian / Come dance with me / Walk like in Egypt.”
She knew enough about popular culture from the MTV that was inexplicably always on
in a house where two-thirds of its members were deaf. What was lost in translation of the
Bangles song was what she missed in her spoken language – specificity. She summarized lyrics
the same way she paraphrased the double-s in my first name to make Jethhe sound. In this way,
she had become hard of hearing not only in her physiology, but her American experience –
20
Bangles and all – was culturally muffled.
There was an undeniable aspect to their “little d” deafness – it was in the mechanics of
their disability. This had been proven again and again by the untrained doctors and rudimentary
audiologists of the 1940s and ’50s:
ClapClapClap. “Yep. She’s deaf.”
It had been scientifically confirmed in early adulthood when deafness tests had to be
passed to qualify for disability benefits. ## percent hearing on the left, ## percent on the right.
Their “little d” deafness meant that something along the path between ear canal and brain
was damaged. It meant they’d need special boxes to caption televisions, teletypewriters to enable
phone conversations. Your grandpa who just got his first hearing aid was “little d” deaf, and try
as he might, he’d never be part of their world.
Miles away was the “Big D” Deafness that encompassed a whole world of rich culture
that wraps around hearing life, creating a fourth dimension of existence. The Big D encompassed
the spectrum of hearing disabilities, from their friend Sheila who wouldn’t notice a car crash if it
happened right behind her to Mindy, one of the few children of Deaf parents who had to
exaggerate her hearing loss so she wouldn’t be turned away from the State School for the Deaf.
The “Big D” meant you belonged. You were part of.
Mom, Dad, their friends – they all saw me as Big D Deaf, even though I could hear
perfectly. That D gave me a language in three dimensions and a passport to a different world.
The D carried significant weight and I wore it like a shiny badge. It meant open access to
long weekend pilgrimages to the annual Deaf School Homecoming. We never seemed to make it
to the football games on account of the pre-party celebrations with friends from out-of-town, but
we never missed the post-game dancing and dominoes at the Deaf Club.
21
“Big D” Deafness meant a lifetime of patient smiles when a well-meaning aunt wanted to
talk at you about The Miracle Worker or the latest Marlee Matlin special on Lifetime or her
daughter’s friend’s second-cousin who was deaf – no, wait. Blind. Timmy was blind.
“Big D” deafness meant a special relationship with silence, a fundamental connection
with an otherwise noiseless universe that only erupted in noise when something went wrong.
Meteors. Supernovas. Aunt Helen.
It meant access to a culture so opposite the English-speaking mainstream, a world where
older children taught sign language to the younger kids behind the backs of the hearing teachers
and principals who doled out licks for using the shamed manual communication.
It meant all the things “hearing” implied but didn’t call for a capital letter. Regional
signed “accents” that made New Yorkers sign lightningfast and Georgians a-g-o-n-i-z-i-n-g-l-y
s-l-o-w. Political activism that pressured a hearing board of directors to appoint the Deaf
university’s first non-hearing president. Relationships with people with whom you could talk
about more than the weather – Point. Pantomime shiver. “Cold, ain’t it?”
The “Big D” allowed them to experience a vivid world in three dimensions, instead of
hazy shadows.
And for many, including Mom, it meant isolation from the hearing family that loved her
but never learned her language. In this Deaf-World, she had found a new family.
It’s not that they weren’t happy I was born without their “little d” deafness. I would be
spared the maze of accommodations and workarounds they had learned to navigate: Blinking
doorbell lights, vibrating bed alarm clocks, handwritten notes to drive-thru operators.
But, in truth, they not so secretly mourned the idea that their child would be different
somehow, foreign.
22
“Your kid, how old is he?” acquaintances would ask.
“Three,” they would answer, knowing what was coming next.
“Hearing or Deaf?”
“Hearing,” Mom would say defensively. “But he is more fluent a signer than any other
Deaf kids his age. He is very smart.”
deafness isn’t an issue in a Deaf family.
• • •
Theirs were hearing families.
Dad came down with polio shortly after he began talking. The illness diminished much of
his hearing and left him with the gait of a one-booted cowboy.
Mom just stopped hearing a few months into life. Depending on whose story you listen
to, she either was struck by a mysterious high fever or a fly softball popped by one of her
brothers. I always believed the fever story because it came from my grandmother, who lied to me
only once.
But that’s another mystery entirely.
I wanted to know – desperately – why we were different, why I hadn’t been born like her.
If her defining characteristic was her inability to hear sounds clearly, what was it that bonded us
as mother and son?
I was also interested in the gory details.
How hard did the ball hit her? I don’t remember.
Did it hurt? Yes, very much.
23
Did she beat up her brothers when her head finally stopped ringing? How could I have? I
was a toddler. But I got them back later.
Did she have, tucked away, a distant memory of being normal?
A wince. Silence.
No. I don’t think so.
They both were born to poor blue-collar families in the 1940s. Jesse came first, a brightred-headed boy born to Cleo and Jesse Sr. in rural Oklahoma. A few years later, Doris was born
to Thelma and Charlie in a far corner of East Texas farmland. Their parents tilled the land that
their ancestors’ calloused hands turned up. They canned figs that sprouted in the front yard and
tomatoes that grew in the back. They played dominoes on Saturdays and went to church on
Sundays.
Dad didn’t talk about his childhood or much else. He was sent to live at the Oklahoma
School for the Deaf in Sulphur. His father, with whom we both share a name, died when he was
young and his mother remarried quickly. Dad was married once before, but it ended soon after he
learned he couldn’t father children.
Mom loved reliving memories. She’d tell about how one day her daddy sold almost
everything their family owned to buy a car – just so he could drive her to the Texas School for
the Deaf for her first day of school. When she realized he was leaving her alone to live in a dorm
in this strange place 200 miles away, the tears and anguish could not be extinguished. Feeling
terrible for what he was about to do, her daddy asked to use the school’s phone and called his
boss to tell him that he wouldn’t be back.
He was moving his family of five to Austin to be closer to Doris.
Mom and Dad met through mutual friends. Everyone has mutual friends in the Deaf-
24
World. When meeting someone new, the first questions answered are where did you go to
school, who are your parents and siblings, and do you come from a hearing or Deaf family?
After a year of sharing Deaf Club dances, bowling tournaments, Deaf bingo nights, and
themed parties that always seemed to feature a masquerade, Mom stopped getting her period.
The tests confirmed that she was pregnant.
Neither had a job or a way to support a new baby. Dad, having been told he would never
have a child, promised to do anything he could to take care of his unborn treasure. Mom, 34 and
having ended her pregnancy the last time she found herself in this spot, confided in her best
friend that she knew she was supposed to keep this child.
They were quickly married (at the insistence of her mother) and Dad promptly got a job
at Mrs. Baird’s Bakery (at the insistence of her father). They soon moved out of her parents’
house and into a subsidized apartment for low-income earners with disabilities.
At 35, Mom had been married three times, each husband with diminishing promise for
riches and a white picket fence. But this would be her shot at a true family. She had always felt
like an imposition on her parents and brothers, right from the beginning.
Neither family had easy access to a doctor, let alone one who specialized in deafness.
The medical opinion of deafness was that it was an unfortunate handicap that could be
fixed, like rickets, with the appropriate treatment. But unlike other disabilities, deaf children
would have to do without crutches.
The scene played out as it had thousands of times before in doctors’ offices across the
country.
“I’m telling you, Thelma, if you learn that signed language, Doris won’t ever learn to
read lips or speak like a normal child of God,” her doctor warned. “Now, that’s not what you
25
want, is it?
Grandma, not yet 25 and already having buried one of her four children, who was
stillborn, could not imagine either option. She pleaded with the doctor:
“But how will she learn anything? How will I know what she’s thinking or feeling? How
will I know anything?”
The doctor and Baptist deacon took her hand and prayed with her in quiet words that they
shared only with God. The 2-year-old girl, perched on a dull gray armchair and dressed in her
Sunday finest, wouldn’t ever fully communicate with her mother, father, or brothers ever again.
She would need to be accommodated, yes, and some tough love was in order. But maybe it
would mean she could live a normal adulthood.
The doctor’s prescription: Her family should learn just enough home signs to
communicate essential information – eat, sleep, Mom and Dad, Doris – but force her to read lips
and speak for herself.
Force her into a world of silence.
But everything would change for her at the Texas School for the Deaf, the gateway to the
true Deaf-World. There were other children, some of them with Deaf families who had taught
them signed language. They feverishly taught it to anyone who wanted to learn, which they all
did, and to anyone foolish enough to disobey the rules on using sign language in the presence of
school staff. New vocabulary bent her fingers into words that finally gave her a voice. Within
weeks, she was teaching the native signers how to hide their secret conversations from the staff.
She was fast and creative with language. She was mischievous.
Aside from the limited home signs prescribed by the doctor, neither her parents nor her
two older brothers ever learned any more sign language. Years later, when specialists began
26
recommending a blended approach to language that included sign language plus speaking and lip
reading, her family would all be too entrenched in comfortable patterns of pantomime and
silence.
Every conversation with the people who should matter most was in baby talk.
When I was born – “Healthy, happy, and hearing,” Grandma would beam – Mom would
teach me to sign and speak. The endless hours of speech therapy and practice in the mirror had
prepared her for this.
She would give me the two languages that her mother couldn’t.
In her arms, a tiny infant provided a shot at getting things right. Her only child would
grow up to be a teacher or office worker, maybe even a doctor or president. He wouldn’t make
the mistakes she made. He would be smart and funny and noble. He would be all the things that
all parents dream about for their kids. He would be the things she couldn’t be.
He would live in both the Deaf and hearing worlds.
27
CHAPTER 2: Decide
The hallucinations had subsided, and in their wake a profound stillness overtook her
restless body. As I watched Mom sleep, it seemed the fog of dementia that had delayed
everything – the liver enzyme evaluation, getting on the transplant list, deciding on contingent
hospice options – was slowly lifting.
The torture of her insomnia – violent apparitions circling above her head, notthere noises
loud enough to keep a Deaf woman awake – had eased, soothed by heavy sedatives.
I sat in an overstuffed chair, the faux leather sticking to my restless thigh.
Updownupdownupdownupdown. An untested black running shoe squeaked in time as I scanned
the room. I was her only son, her last concrete link to the hearing world. And while she rested
peacefully for the first time in days, I slowly began to fall apart.
A too-big and too-plain wall clock looked no less out of place in Mom’s private hospital
room than had the one she so proudly hung on the dining room wall all those years ago. Encased
in brown plastic on a yellowing background that belied its no doubt crispwhite beginnings,
shined the seal of the Comptroller of Texas. Her fourth husband recovered it from the dumpster
at work, where he cleaned state offices long after his hearing coworkers had left. Unlike my
father, who brought home apple pies and fresh-baked bread from the bakery, Tommy would
punch out and bring home file cabinets and half-chewed pencils.
“CANNOT BELIEVE! CLOCK THROW-AWAY? WHY?” he signed, as Mom hung it
proudly on the wall.
We called him “Walrus” behind his back on account of the bristly white mustache that
wiggled above pencilthin lips – and the way his Deaf-voice sounded like my favorite performer
28
at Sea World, a breathy and bellowing guttural song punctuated by shrill discordant notes every
fifth or sixth beat.
Walrus must have won the clock in the divorce settlement less than two years into their
marriage because it left when he did. She had been sober through much of their relationship, but
picked right back up as soon as he left.
My eyes scanned the papered wall of San Antonio’s University Hospital and were drawn
back to Mom, as if her sleeping spirit held me like a tractor beam. Her dinner sat untouched.
Surely it had been delivered out of habit by an orderly or intern not familiar with her nearcomatose condition. It also appeared they had never heard her opinions on red Jello (“MAKE
ME FEEL JUST LIKE BABY!” she signed in complaint) or chicken broth (“I CAN TASTE
THAT – SODIUM. YUCK! THROW-UP!”). But, of course, she would never imagine protesting
to the hospital, only to me. Her mother raised her to never “be ugly” in public.
Since Mom quit drinking for good 3 years ago, she took a vow to not be ugly anymore.
Next to the untouched dinner was a box of plainwrapped hospital-strength tissues that
probably cost the Medicaid program $35. Our appointed social worker had left them with me
during her last visit: Things weren’t going well and the transplant evaluation would naturally be
put on hold (naturally!) and would I like the contact info for hospice and, now, this just must be
hard on you and you’re being so strong and, one more question, just what insurance did she have
again?
The tissues had been a parting gift from the kind woman who kept my expectations in
check, a consolation prize to the fully functioning liver she so desperately needed behind door
number one.
I thought about the coat closet in my apartment and the brown pleather purse it held,
29
wrinkled and puckered and worn and tired. Appropriate. Buried in with giveaway Deaf Relay
promo pens, two pair of broken spectacles, and enough silver change for a month’s laundry, were
a mound of wadded tissues. Each one a physical manifestation of my mother’s idiosyncrasies.
Most of the wadded-up stories at the bottom of her purse were benign – a particularly bad
day for cedar, a weekend cold that had been passed around the retirement community she called
home. But buried down in the deep were the remnants of the could’vebeens she tortured herself
over, like the life she walked away from when she left her first husband, the hearing Navyman.
She traveled nearly 2,000 miles from Austin to make a new life with him in the Big Apple, but
the bridge between their cultural worlds was too far a commute. Also in that purse were the
hours of emotional flogging she had worked into a daily ritual, a sacrifice and penance, of sorts,
to her fifteenyearsgone parents. Out of each damp papercloth wrung still more memories.
A lifetime of smoking had made her nose run incessantly. A lifetime of drinking had
done the same to her heart.
Wedged between the tissues was a similarly exhausted photo album, a shrine of
memories and worthnothing keepsakes that Mom worshiped as a way to hold on to the past that
had rushed by her. Along with the torn ticket stub from the 2009 DeafFest trade show and her
yearlong membership card to the Austin Deaf Club was a museum of my childhood photographs,
packed neatly in a similarly exhausted billfold. Her favorites – and the ones that most often came
out when she described me to new friends – were a cakefaced toddler at his first birthday party
and the straight-A second grader with all four top teeth coated in silver that reflected the
photographer’s flash.
I was three months shy of 29.
Even further down in that brown, tired purse was the Blackberry phone that had
30
bringringrung with concerned texts from friends who had heard the news. They were writing to
me, knowing that her situation had grown worse.
Our family had asked that they not visit, instructed the hospital security not to let them on
the floor, and was arresting people who came in anyhow, the gossiped to each other.
So the Blackberry rang and it rang until the battery finally died. I couldn’t bear to turn it
off, let alone read the messages.
The phone, like the ailing mother who owned it, was among my last links to the DeafWorld of my childhood. Nearly 30 years of stories, language, idioms, love, connections all rested
on the tenuous sleep that would determine whether Mom regained consciousness or if that link
would be severed forever. Buried deep within the soldered wires and memory boards were
childhood photos of Mom and her best friend, Rosie, which I scanned so she would never be
more than two clicks from her best friend. Hidden deep behind the QWERTY keyboard was the
string of a few hundred e-mails from Eric, Mom’s would-be suitor with whom she spent hours
texting into the middle of the night. She’d later discover – after he mailed her a bogus check he
wanted her to cash – that Eric was no more of a suitor than she was a torch singer.
The red Blackberry, which she had mastered in the two years she had a cell phone,
buzzed with excitement from her concerned friends. A Deaf “Telltale Heart,” weighing my
conscious.
Meanwhile, I continued to think.
And unravel.
Deeper still inside her purse was a billfold so worn down it could have passed for a
money clip. I wouldn’t dream of touching the money inside, $187 in all, saved $20 at a time
from her meager monthly Social Security disability check. She was saving for a new jacket, or
31
perhaps new glasses, maybe those tee tiny hearing aids, and whatdoyouthink about me buying a
new car, she asked just three weeks ago. She was ashamed when I asked her to not get me
anything on my birthday, that spending time with her would be the best present. She left $20 in a
card anyhow.
Mom’s shy cough brought me back into the room. I feared the rattling would wake her
and the hallucinations would resume. But Mom lightlightly hummed note of satisfaction and
nuzzled deeper into her pillow.
Unframing her face from my gaze, I looked across the room at the silent orderly, Adanna,
tasked with babysitting my mother. Her skin was unblemished midnight, dark against the fading
magenta of her scrubs. Moving to the gauzy curtain behind her, the cyan didn’t look quite right,
either. My Deaf brain instantly describes the sensation as “COLOR-WEAK,” as if someone had
slightly unscrewed the cap on the world’s hues and turned the bottle upside down. Slowly,
almost indistinguishably, the hunter green in the wallpaper, the pukeyellow of the bedpan had
begun to dripdripdrip and seep out of the room, out of the world.
Between work that morning, 6 hours of summer school classes, and holding vigil here
with the silent orderly, I had been awake for almost 20 hours. This had quickly become the
routine.
Since Mom’s fifth hospitalization in as many weeks, I had spent lots of time on the
WebMD app, a crash course in med school, I thought, that would prepare me to discuss
abnormal symptoms and long-term prognoses with Mom’s doctors. It also provided an outlet for
my own fears about death, as I’ve always secretly prepared for an early demise.
I scanned the app for “leaking color” and find – nothing. I’m not sure what I expected.
Stroke? Mental illness? Anything? No matter, my doctor-in-my-pocket put to rest fears that even
32
my pleading fiancé couldn’t.
I put down the phone.
That phone.
Mom’s friends, frustrated with my lack of concern, had now begun calling the hospital
switchboard to find out about Mom’s condition. My Deaf heritage has taught me to be nosy.
Growing up in the Deaf School, Mom explained, the older kids were always in the business of
the younger kids. Since many were residential students, living away from their families in
dormitories with hearing housemothers and fathers, the Deifies stuck together for protection and
worked out their own hierarchy and discipline system.
It was a custom that didn’t get shrugged off with the cap and gown at graduation.
Mom’s chief complaint about her mostly Deaf neighbors was that they never gave her
any peace. But, in keeping with her Deaf custom, Mom had even given some of them keys to let
themselves in whenever they pleased. I didn’t have a key of my own, but her 80-year-old
neighbor across the sidewalk sure did.
“Always in my business that Betty! Nosy, nosy!” Mom grumbled. “But I guess if I fall
out of my shower one morning, better to have Betty find me than the maintenance man.”
Even in her unconscious state now, laying in the bed, I could hear her tiny giggle and her
mispronouncing “nosy” as “nothy.”
Nothy Betty and another friend, both card-carrying members of the senior center’s Red
Hat Society, made the 90-minute drive to San Antonio just to see Mom in the hospital a couple
days prior. They were let it in while I was in class and, finding Mom screaming and signing
erratically in her dementia, the two pried the nurse for details. Unable to share Mom’s medical
condition with those outside the family – and lacking a language in which to do it even if she
33
wanted to – the nurse instructed them to call my cell phone.
They did. I didn’t answer.
20 hours alone I could handle. 20 minutes talking about it was too much.
“Why don’t you go home and get some rest,” came the voice from the door.
While I had been thinkingsearchingobsessing over every item and every minute and
every memory, Mom’s nurse must have been watching me.
“She’ll be alright, probably gonna rest all night. Poor thing hasn’t had any sleep in, what,
two days now?”
Four, I thought, but “Mmmm,” is all that would come out. It had been the closest thing to
a conversation that I’d had in hours.
“Go on home. I’ll call you if anything changes.”
The clock ticked and the food cooled and the color faded and I memorized the surface of
the tissue box.
What if she woke up while her hospitalsitter was out and couldn’t get that box open?
Where would her tears go? Would she know I had held vigil over her all morning and evening
and night?
I was her only child, don’tyouunderstand? The only relative she still talked to, apart from
one-way dialogues with her long-dead parents. How could I abandon her in that room, alone,
leaving her to sleep next to a stranger appointed so that she wouldn’t hurt herself flailing about if
the hallucinations came back?
A breath. A beat.
I carried the guilt of generations. It had been passed from her mother, who left her
daughter at the School for the Deaf so young and scared and languageless. Mom had passed it to
34
me 30 years later when she gave me up in one defiant action to chase her demons and King
Alcohol.
I closed my eyes and opened the tissue box, no child of my own, except the defenseless
mother curled up beside me.
35
CHAPTER 3: Interpreter
Mom loved the way nonsense words played on her tongue.
“Bet-a-thet-thoooo!” she would chirp to her newborn infant, a crooked smile melting
across my face like ice cream on a hotplate.
She didn’t know where the phrase came from, but it was imbued with Deaf musicality.
False teeth rounded out her crooked smile. Each night, a ritual of remove, brush, polish,
soak before toothlessly chasing me through the apartment as I joyfully squealed that the
boogiemom was trying to get me.
Dad scooped me up into strong, freckled arms that smelled like baking Mrs. Baird’s
bread and stale sweat. I traced the dots one, two, three, before resting a tiny finger on a fresh scar
from where a wayward bread pan seared his arm.
The special of the house was thin steak, broiled – cover is how she translated it – Frenchcut green beans and unsalted sweet corn. I couldn’t understand why our canned side dishes were
always cold when the steak had been covered until it was nearly black. It was cheap, easy to
make, and could be reheated when Dad got home at 1 a.m.
He preferred the third shift because of the premium pay and because it allowed him to
play video games into the night and sleep the better part of the morning.
Once or twice a month, when he worked the day shift, Mom kept the truck and took him
to and from work. These were the best because it meant a day pass out into the Deaf-World. The
corner barbecue shack, the nearby Dairy Queen, even the pawnshop served as impromptu Deaf
School reunions. Preceding cell phones and Twitter by two decades, these were the original flash
mobs.
36
The bowling alley was my favorite. Mom never once bowled with them – “I’m too tired,”
she would always say, although I suspect money had more to do with it – but we would make the
trek to Westgate Lanes just to watch the Deaf leaguers hit strike after strike after strike.
“Those hearing people always talk, talk, talk. Maybe if they could throw the ball with
their tongue, they would be as good as us,” joked Ron, the most talented and outspoken of the
bunch.
“No, we would probably still win at that,” said his wife, Peg, twisting her mouth into the
contorted positions that often added emphasis to their sign language handshapes.
Mom gave me the spare quarters at the bottom of her purse, the ones that hadn’t been
reserved for washing clothes or rolled up to help make ends meet at the end of the month. It was
usually gone in 60 seconds at the crane machine. Dad would drop in a quarter and usually come
back with a stuffed animal. He had collected more fuzzy dice from that machine than friends
with cars to hang them from.
“Mom-Mom, I need more quarters for the crane.”
“W-h-a-t-? I told you not to spend it so fast on that crane!”
She finger-spelled “w-h-a-t.” It was never good when she finger-spelled words that had a
sign of their own. It was a Deaf equivalent to Angrily. Drawing. Out. Syllables. All mothers do
it.
“Oh Doris, he’s just having fun,” said Ron, turning to me. “Here, get some change with
this and go s-l-o-w.”
He handed me a five. It might as well have been a hundred the way we guarded money.
Mom’s face flushed with blood and embarrassment.
“He’s just having fun. Let him go play – he’s a kid, he should be having fun and not
37
sitting with us foul-mouths.”
She agreed to let me take Ron’s money as long as I promised to not spend it on the crane.
“Play PacMan or the karate chop game or whatever it is. That crane steals your money!”
“Doris, enough! Finish!” he said. “Let him play what he wants to play. Anyway, I’m
going to take all the money these chumps have tonight when I win.”
Four of Ron’s five dollars lasted just minutes and, with nothing to show for it, I pocketed
the remaining quarters and watched an older kid play Mrs. Pac-Man.
The crane game wasn’t a scam. I was just bad. I used my hands to communicate –
learning to sign before I could speak – but that’s where hand-eye coordination stopped. I showed
zero aptitude for video games and even less for sports. The crane game was about the closest
thing I would get to either for my first 10 years of life.
When I returned, she was signing with one hand. The other was holding a Budweiser
under the table. Her eyes pulled mine from the hidden beer bottle like a tractor beam.
“Finish?” she asked, pulling the Bud out of my view.
We had to leave the Lanes by 8:45 if we were going to make it to the bakery in time for
Dad’s out punch at 9 p.m. We pulled into the lot with three minutes to spare.
“Can I go in and get him?”
“No, he will meet us out here.”
A minute passed.
“Please? I want to go inside and see!”
“FINISH! N-O.”
It was an obsession to get to go in and watch bread being made. On the luckiest of lucky
days, he would give me a souvenir paper Mrs. Baird’s hat that doubled as a hairnet and take me
38
in to watch the dough braids go through the process of becoming bread.
I could watch it for hours.
His was the first station. One by one, Dad lined the empty trays on the conveyer belt
where they began their journey. Everything was hot, including the pans fresh from the oven and
back on the line where Dad was waiting with gloves to send them around again. Around and
around and around, metal hamsters on a conveyer wheel.
Julia, the plant secretary, was a sucker for my smile, which now included four silvercapped teeth. If we ran into her, it usually meant I’d be bringing an apple pie or fresh-baked
cupcake for the ride home.
But most of these nights would not be so lucky. Mom loathed the damp heat of the
bakery and, for her, we could never get out quickly enough. Her father had retired from the bread
company shortly after getting Dad the job.
The bakery reminded her of her father, the first man she loved enough to push out of her
life.
•••
On nights when we picked up Dad – and while there was money left to be spent on such
extravagance – our covered steak and cold beans would be traded for cheeseburgers at Dan’s. It
was just down the street from the Texas School for the Deaf and, unlike the bowling alley, was
more than occasionally full of Deaf customers. Mom’s friends would joke that even after they
turned off the lights for the night, the Deafies would take out their flashlights and keep right on
talking into the morning and have the coffee ready for breakfast the next day.
“French fry or onion ring?” Mom asked.
39
“Both,” I said.
“No, not both. Which one?”
Mom and Dad were working-class Deaf, part of the crowd that, if they had a job, spent
the money as fast as it came in. Dinner at Dan’s might have gone unnoticed to other kids: There
wasn’t a florescent playscape like the one at McDonald’s and the six-song-for-a-dollar jukebox
was usually out of commission. But to me, Dan’s was a brief chance to be a normal family in our
sea of Deafness.
One day a month, we had money. We were together.
But there would be only one fried side dish tonight. I placed a crooked finger up to my
temple and rotated my wrist.
“ONION,” I signed.
“Ok, tell the woman three cheeseburger meals –“
“Three cheeseburger meals –“ I told the cashier.
“One with hundin ring,” Mom voiced her.
“Onion,” I corrected.
She signed and spoke e-v-e-r-y word she shared with me. She said it was her motherly
duty to teach me both languages, but, by my preteen years when I was perfectly fluent in both, it
seemed to be as much an attempt to prove to hearing people that she could function in their
world.
I was so ashamed of her voice.
On a crowded but silent bus, she’d start yammering about how she was going to whoopee
the upstairs neighbor’s butt if they didn’t stop slamming doors so loud she could feel it. She
would rattle a library full of readers with a squeal: “Jetttthhhhee!” she would call out to me,
40
panicked when I wandered off to look at magazines.
“Number 86 your order is ready,” the speaker blared.
I was still at the counter, trying my silver smile trick on a gruff fry cook. He was not
amused as Julia at the bakery plant had been, and there would be no free treats for me today.
A glowing red “86” interpreted what I had missed. I shuffled to meet Dad at the window.
He put me on ketchup duty.
“Dad! Dad! Where are my onion rings? They forgot them!”
He didn’t move.
“Tell them! Tell them Dad!” I begged.
“YOU TELL,” he signed matter-of-factly.
“I don’t want to. You tell them.”
“You tell them or you eat French fries,” he told me. “DON’T BE A BABY, YOU”
I could handle being their voices, but I was paralyzed to use my own. Stay out of the
way, don’t make a scene. Don’t send it back. It was central to the East Texas values Grandma
had instilled in all her children.
We all ate fries that night.
Back at the table, Mom feigned a sudden thought.
“Jesse Sr.! Guess what? Peg and Ron are having a party tonight after bowling is
finished.”
“Good for them,” said Dad. He had an evening of Nintendo Duck Hunt planned, but he
was listening.
“Let’s go! I thought we could go and –” She pantomimed, “Puff puff.”
Pot.
41
I knew she had another motive. The silent, Shrinking Violet, elbow deep in French fries,
had no problem speaking up for himself now.
“Mom-Mom! No! I hate Ron! He’s an asshole.”
Their responses overlapped.
“Jesse Jr., don’t say that word –“
“But he gave you $5 to play games.”
“DON’T-CARE NOTHING,” I yelled with my hands. Now I was the loud one in the
library. “I hate Peg and Ron’s house! I’m the only kid there! And all you do is ‘puff-puff,’ drink,
bullshit, bullshit, drunk, pass out. I don’t want to go!”
“Just one or two drinks to relax and have fun,” she pleaded, forgetting for a moment that
she was the parent. “We don’t have any money and this is free fun for Mom and Dad.”
“I want to go home,” I demanded.
“Jesse, sit down and eat your cheeseburger,” Dad ordered.
“Not unless you promise we go home after. I H-A-T-E Peg and Ron’s house. It’s awful.”
“Your Mom just wants to relax and have some fun with friends. You can watch movies.”
The silver-toothed Violet pushed back from the table, walked across the red-and-white
checkered linoleum, took one of Ron’s remaining quarters from the bowling alley, and put it in
the pay phone.
“What are you doing now?” Mon asked from across the diner.
“Calling Grandma and Grandpa. I’m going home.”
42
CHAPTER 4: Worse
“You know, she’s real sweet,” Maryanne offered, noticing I had put down my homework
to battle with my thoughts. “I was here with her yesterday morning when all that hallucinating
was going on and she was just so scared. She wasn’t mean like the ones I usually sit with, just
scared.”
It was early and I had stopped by the hospital before work to do the previous night’s
homework and wait to visit with the doctor. Her condition, along with her fetal posture, hadn’t
changed.
“She is. Very sweet, very sweet,” I managed, returning to my Literature Anthology and a
peculiar Japanese story I had read three times, each re-read bouncing off my brain like a tennis
ball off Texas summer cement.
“I bet she’s a good mama to you.”
Maryanne must not be as versed in body language as my upbringing in the Deaf-World
had shaped me to be. Cross-armed and looking out the window, I did not want to talk.
I pined for the stoic Adanna.
“Yes, she’s very sweet,” a beat. Then, “We have a – special – relationship.”
I have spent a lifetime battling semantics, first within my own bilingual world and now
with the uniformed others who sought to confine our relationship within the binaries of “mother”
and “son.” I was her progeny. She had reassured me of this at age 9 when, after seeing a Sally
Jessy Raphael show on adoption, I irrationally insisted that I must have been born to another
family.
She had birthed me, but the semantic accouterment that accompanied the title “mother”
were like the oversized hospital gown that now hung over tiny frame.
43
The aide had assumed, as had the nurses and the gastroenterologists and the respiratory
therapists and the anesthesiologists and the hospice manager and the social worker, that we had a
relationship like other mothers and sons.
What a quaint picture, I imagined they must think: A woman who can’t hear and her son
who miraculously learned to talk and function like a normal person. A mother courageously
battling against her disability to provide for her son, sacrificing so that he might have a better
life. A son, grateful to now care for the mother who once protected him.
How interesting our lives must have been and how heartbreaking that she now lay in the
transplant wing of University Hospital, sleeping for the first time in days.
I could see this bullshit story coming together behind their eyes, but usually offered no
rebuttal. It served no real purpose to explain that this was the woman who had left me with her
parents on my second day of life so she could drink and party with friends several hundred miles
away. This woman laying in the reclining bed was the same one who had been acting out since
she was a child, throwing herself on the ground in wild temper tantrums – well into my
childhood – when things didn’t go her way. This mama you think you know so well, Maryanne,
is the very same one who chose drugs over her son and isolation over family. And now, again,
she found herself stuck, alone, and I was left to help piece things together.
This line of thinking inevitably led down a resentful path and I had learned that my only
freedom would be to stop the tape from replaying in my head.
The truth was that in the last three years I had come to terms with Mom’s addiction and
the healthy boundaries I had to draw to maintain my own sense of serenity.
But Maryanne pushed.
“I bet you she used to talk to you a lot, didn’t she?” then, without pausing for an answer,
44
“I heard her talking before we got her to sleep and I could understand some of what she was
saying. Not everything, but I got a few words. And she has a sweet laugh, too.”
What was this torture, Maryanne? Haven’t I suffered enough?
“Yes, she did a lot of speech therapy so she could learn to speak and read lips,” I offered,
hoping it would bring us to another topic.
“Well, she certainly did a good job raising you. You speak so well to those doctors, I can
tell you’re really smart. I know your mama’s proud of you.”
She was.
She is.
• • •
Having gotten Mom to sleep – finally – and knowing there was nothing else I could do
but worry, I kissed her on the forehead, thanked Maryanne for sitting with her all evening,
checked out with the nurse, and walked down the eleven flights of stairs.
The stairs had become a ritual to help keep order in my universe – a way to exert a tiny
bit of control over a world that had spun wildly into the cosmos of unmanageability. Each
footstep – one, two, three, four, five, six, seven, eight, nine, ten – helped me center my thinking.
“If I can make it down this flight in 20 – no, looks more like 18 – yes, 18 steps. If I can
make it down in 18 steps it means Mom will break through the dementia and be OK.”
It took 17.
45
Sometimes, I’d try to hold my breath through odd-numbered floors. Other times, I would
take them two-by-two on even levels. If I can walk down an entire flight without opening my
eyes, it means she’ll be placed at the top of the transplant list once all this is over.
I have counted like this for as far back as I have memories. By manipulating myself, the
steps I take, the breaths I count, the number of times I look up at passersby as I write this
sentence, I can somehow gain a sliver of insight into the Universe’s divine plan. Never mind that
the Universe doesn’t reveal itself in binaries – either she will wake up and everything will be OK
or she will die tonight – I am convinced each time, disavowing previous results, that this is how
the Divine wishes to reveal itself.
As I pass the 4th floor nursery wing on my decent, I agree with the Gods that if I can jump
from the 6th step up to the landing without falling, Mom will survive and get to meet her
grandson. Sure, he’s just a germ of an idea in the back of our minds, but I’m already risking my
limbs for him.
I wondered if she would have done the same for me.
I stop on the 10th step and, for the first time since Mom’s hospitalization, see myself.
Mom has spent the better part of the week writing in bed as the liver toxins or low
oxygen or high sodium levels or godonlyknowswhat invades her brain. Living what may be the
last months of her life in a delusional haze that governs her every move.
I walk down 9, 8, 7, 6 and pause.
I will not let the crazy control me.
5, 4, 3, 2, 1.
46
CHAPTER 5: Better
Charlie and Thelma Adams were at Dan’s Hamburgers in seven minutes. Mom followed
me to the parking lot. Dad stayed put.
Grandma emerged first, a sheer rayon fabric covering tightwound rollers. The plastic pins
held her coarse silvery hair close to her 70-year-old scalp. This ritual of monthly perming and
weekly roller maintenance had been interrupted by my frantic call. She didn’t leave the house
once the rollers went in until Sunday morning’s church service.
The moment I saw her purple- and green-flecked headscarf, I knew I had overreacted.
Where Grandma had been slow to rise out of the white Chevy pickup, Grandpa moved in
double-time. He had been a navy boat driver, fighting the Germans in World War II. His moves
were deliberate and strategic and his feet still fell with authority.
Just as he loaded a verbal torpedo to launch at Mom, Grandma intercepted him.
“Doris, what is this that you’ve been drinking? They don’t even serve beer here, do they?”
she said before turning to Grandpa, “Do they, Charlie?”
Mom had learned to understand her parents even better than her two hearing brothers had.
She could tell her son had tattled on her, ratting her out to her parents.
“Ma-Ma no! Just one beer, little drink,” she pleaded with her voice. “We went bowling
then to get Jesse Sr. and now eating and then go to Peg and Ron’s house. That’s all and now he’s
just crycrycrycrycrying for you and daddy.”
Her iceblue eyes with pupils narrow as pins darted at me like an angry older sister, ratted
out by a sniveling kid brother. Grandpa kicked in before I could protest.
“That Ron Hargrave is a no-good drug addict and you will not take our grandson to his
house,” he snapped. “Do you understand me, Doris?”
47
Grandpa didn’t need me to remind him of the time Ron called me a tittybaby for being
scared of his German Shepherds, twice my size at age 6. He, too, must have recalled the time
Ron grasped mammoth hands bluntly around my chin and neck, lifting me up and off the floor
just to prove he could, a pet guinea pig the teacher foolishly sent home with the class
troublemaker. That I had made it this far, I thought, was thanks to luck or a benevolent bent to
the universe. It certainly wasn’t thanks to Mom’s careful eye.
Unsatisfied that she hadn’t swayed her parents, Mom continued. It didn’t matter who had
the soundest rationale or the wisest position. More than anything, we fought for the knockout
punch, the right to say you had ended it.
“He gave $5 to Jesse Jr. to play games. Tell them. Tell them about Ron gave you $5 you
remember?”
“Jesse, what did she say?” Grandma asked me.
Mom smirked at me. Her voice and hands went silent.
Making your opponent interpret for you in an argument was fighting dirty. When she
reached her hand into the bag, this was the trick that most often got pulled.
“She said he gave me $5 to play video games earlier,” I translated between clenched teeth.
But Grandpa saw through her deflection and zeroed in on his daughter.
“I don’t care if that trash gave him $100, you will not drive drunk with our boy in your car
and you will not take him to that Ron Hargrave’s house ever again. Do you understand me?”
Mom turned away from him by 90 degrees.
Silence was loudest in her Deafness. It was a river of isolation that whittled at the mountain of
our sameness until we stood at opposite sides of the canyon.
Our relationship was defined by these moments, forged in the silence.
48
She just couldn’t figure out how to care for this hearing child who was no more like her
than if he had been born a donkey. Why did she feel such a detachment from him, the bean she
carried for 9 months, the time capsule that gave her a chance to live forever? Why couldn’t she
be like other mothers? Didn’t her childhood friends from the Deaf school – Pam and Nora and
John and Mary – didn’t they all have normal hearing kids who weren’t afraid of their parents like
this?
She could barely stand the thought of it: There must be something wrong with her.
The realization wounded her fatally. She would slowly bleed out over the next 30 years.
“Doris, you gave up the right to tell this boy what to do. We are this boy’s caretakers and
you will respect our rules.”
Grandma had landed an unfair blow while Mom was on the ropes and she knew it.
Realizing, pulling back, Grandma offered, “I only want to protect him. And you.”
The idea that she had somehow broken her daughter and now needed to shield her from a
harsh world had consumed Grandma, a strategy of shield and deflect to which had both grown
accustomed.
Hadn’t her daughter gotten pregnant out of wedlock without any concern for how she
would care for her child? Didn’t she sneak red cigarettes and warm Budweiser and
godonlyknows what else when her mother wasn’t looking? And wasn’t she the one who, less
than a week after giving birth, drop off her son with her parents so she could party that first
weekend of motherhood with friends three hours away in Dallas? Their case for taking
guardianship – in name, if never in force of the courts – was clear.
A silver reflection appeared and started to grow in the corner of Mom’s eye, catching the
reflection of the parking lot’s overhead fluorescents. It finally collapsed, leaving a heavy, wet tail
49
down her cheek. I had begun to recognize that streak – it was as much a part of my early
memories of Mom as her quick, slender fingers with their chipped nail polish or the scent of
White Rain hairspray overlapping Estee Lauder powder makeup. Quick to my mind, too, were
the sit down conversations from Grandma and Grandpa, who had become my de facto parents
shortly after I was born.
I know it pained them to have to tell me anything negative. Grandma was our home’s great
communicator, deciding which information would be withheld to protect me.
Shield and deflect.
But on some occasions – either because it couldn’t be spun or because she couldn’t hold
back the pain – the truth couldn’t be avoided. They all began the same way: “Your mother has
been drinking,” and the ending – each time – was never good:
“And you won’t be visiting her this weekend.”
“And we can’t take you to Garfield on Ice.”
“And she has been in a car accident.”
“And she tried to hurt herself.”
“And I’m not sure when she’s going to get out of jail.”
Life, it seemed, was a series of binaries. Black and White. Deaf and Hearing, Truth and
Convenience, Sober and Not.
Mother and Other.
I was – of necessity – a child of the Grey.
Dad emerged from the restaurant with our bag of half-eaten burgers and mom’s hundin
rings. After a sideways glance from Grandma and a knowing nod toward his father-in-law, he
put his arm around Mom and voiced exhaustedly, “Let him go home, Doris.”
50
She glared at the tops of red-chipped toenails.
After an eternity, a defeated, “Fine,” from Mom.
51
CHAPTER 6: Conditions
“It might be easier to start with what she doesn’t have.”
We had been through this before. At the ER when she checked in because the pain in her
fluid-swollen belly had become too much. At intake when the doctors decided she would need to
stay overnight. On the second-floor of University Hospital in San Antonio 90 minutes away,
where she had been transferred for transplant evaluation. And now here, in the unit where she
had slipped from consciousness.
But unlike any other time, I didn’t have her to nod knowingly as I explained each ailment
in the most positive of lights.
“Asthma?” he started with the As.
“Yes,” I said.
“Inhaler use?” he curtly suggested, more a terse reprimand than question.
“Not really,” I said. Seeing his face begin to wrinkle in chastisement, I offered “I mean,
she manages it well without an inhaler. But she has a prescription, yes.”
Watching the nurse’s face, I remembered how the skin on Grandma’s forehead would
gather near filled-in brows when she was upset with me or, more often, with Mom.
Paul, his security badge read, ran down the list of medical conditions as part of Mom’s
assessment. The nurse, portly and unshaven, with stubby sausage fingers that would make him a
clumsy signer, continued to probe at Mom’s medical history that we both knew had been
captured by no fewer than 4 nurses previously. Never mind the fact that she was writhing in the
bed below us in a simmering semiconscious, her upper body squirming in alternating bouts of
laughter and terror. Her caretaker, a part-time nursing student named Susan, gently held her hand
52
and moved a pillow to help cushion Mom’s neck from the incessant jerking that had resumed
overnight.
I worried that each answer “yes” and the check it prompted on Paul’s clipboard was
knocking her further and further back on the transplant list. She had made it through all of the
tests – except a final CT scan – before she slipped out of consciousness, and this exercise only
reinforced for me just how close we had come.
He continued the inquisition, focusing on her respiratory history. Emphysema. Check.
COPD. Check. Oxygen use in the home. Check.
They were statements rather than questions. Accusations.
Paul and I continued what was, in my mind, a carefully orchestrated disqualification
dance. I wanted to be honest, but also had just read on my medical app that the shortage of
organs means that adults with compounding medical conditions are less likely to receive an
organ transplant. Dementia was an instant disqualification. And it makes sense – why waste an
otherwise pristine liver on a body so ravaged by a litany of complicating factors?
Except when that body is the person you spent your life wishing would go away forever.
The very same person you now cling to with every ounce of strength you have.
We checked the everyday ailments and symptoms understandable for a woman her age –
vision problems, intermittent dizziness, arthritis in her hands and back – and the ones that
brought her into the hospital – weight fluctuation of 15 pounds on her 100-pound frame, but also
fainting spells and an irregular tremor in her hands that she just knew meant Parkinson’s or
Alzheimer’s. The doctors had reassured her over and over that it was only a nonspecific tremor
associated with the aging process, but she would continue to bring up – as she signed it in
53
shorthand – “P-A-R-K” or “A-L-Z” – over and over. It seemed fitting to mention the symptom to
Paul, since Mom couldn’t.
Her only surgery, Paul now noted, was the C-section that brought me into the world. A
tiny five-foot-nothing on her tiptoes with narrow hips further obstructed by a broken and crooked
tailbone, it seemed the only safe option. Had she been able to communicate with Paul, Mom
would have surely pointed out that she also had her appendix removed as a child. Or maybe she
hadn’t. She wasn’t sure. “But you’d better go ahead and write it down,” she would say.
Grandma was Mom’s link to the outside world until I came around. As such, she was the
keeper of all information before the early 1990s when I took over as a sentient adolescent. It’s
not that Mom wouldn’t – or couldn’t – trouble herself with trivial information like whether her
arthritis was of the rheumatoid variety or not; she didn’t have a context to make these words
meaningful. Her native language – the one in which she thought and dreamed and communicated
– didn’t have such words. Emphysema was just a jumble of letters she couldn’t pronounce in her
head or spell with her fingers. She signed it “BREATHING HARD.” The lack of context
rendered the words meaningless.
With only an incomplete framework from which to understand the world of medicine,
Mom had reduced her illnesses into words she could understand. Esophageal varices – a
condition where the hardening of the liver causes the arteries of the esophagus to build pressure
and swell, threatening rupture – thus became “THROAT-INSIDE-SWELL” in ASL. Similarly,
the fluid that her liver could no longer process because of the scarring brought about by alcohol
abuse and Hepatitis C – that same fluid that now swelled her belly up to the point she had to keep
three different sizes of underwear – became “WATER STOMACH-SWELL.”
54
Without a framework for understanding these, she relied on Grandma for all those years.
And, unfortunately, I didn’t have all of the answers.
I blamed ASL for betraying her understanding. I blamed myself, too.
Paul moved down the checklist dutifully.
“Mental or mood disorders?” he asked casually.
This was worst of all. While I remember Mom spending lots of time in psychiatric
facilities as a child – rehabs, hospitals, out-patient programs, and the like – I was too young to be
told exactly what these stays were aimed at curing. Nerves, they said, which was East Texan for
the nuthouse.
And by the time I was old enough to know what was going on for myself, I had pushed
Mom out of my mind and my life.
The reality was that I didn’t know the full truth. And my insides told me Paul shouldn’t,
either.
Would the doctors he reported this information to entrust a precious liver to a woman
who had attempted suicide more times in the last 20 years than she had changed hairstyles? She
had certainly been a manic-depressive – in behavior if not diagnosis – for as long as I can
remember. She had been hospitalized for depression several times, to the great shame of my
grandparents, who didn’t understand that it wasn’t their fault.
But the three years since her chronic liver diagnosis had changed her somehow. Petrified
of dying, she clung to life with a new vigor. Every creak, spasm, and pimple was a critical
condition needing diagnosis. So down the block to the ER she would go, where the doctors
would examine, medicate, and confuse her before sending her back home to rest.
55
“DOCTOR SAYS I HAVE DIABETES,” she sent to my phone in all caps.
“SOMETHING- BLOOD SUGAR TOO HIGH. ? COME SEE ME”
Text messaging was an improvement on the Deaf communication technologies of my
childhood – either visiting the person’s home or using an arcane relay service where an operator
equipped with a teletypewriter would read and transcribe our conversation over the phone. But,
as any parent of teenagers knows, the medium of 160-character messages often overstates and
undercontextualizes.
An hour-long drive the next day to review Mom’s discharge papers at her apartment
showed absolutely nothing about diabetes. But she was so adamant. I scanned the printout halfexpecting the words to change between readings. She had been treated for pain in her abdominal
area, likely brought about by stretching skin because of a damaged liver, they noted. A maze of
phone calls and discussions with nurses had left me similarly perplexed.
“Who told you that you were diabetic?” I asked in exasperation. I hadn’t thought to ask
Mom that yet.
“The nurse,” she assured me, similarly puzzled.
“Mom-Mom, nurses don’t usually diagnose people,” I said, realizing that “diagnose”
probably didn’t fit her framework. “I mean, nurses help doctors but only doctors make decisions
on what’s wrong with you. You sure it wasn’t a doctor who told you that?”
“No. No,” she paused. “It was that nice nurse named Betsy or Betty or Barbara … B-,
Ba-, something. The tall one with long blond hair, skinny-skinny, with the curved-up nose.”
No offense to Betsy or Betty or Barbara, but Mom had been to the ER so many times in
the last three years that they all ran together.
“I saw on the wall a poster about talking to a food doctor,” she began.
56
“D-i-e-t-i-c-i-a-n-?” I fingerspelled.
“Yes, that!” she remembered, a light bulb popping. “And I asked what else kind of foods
I should eat. I mean, I know no salt, no coffee, but what else? Because my mom and dad were
diabetic, you remember?”
Hours of childhood fascination with Grandpa’s finger-prick machine, but too chicken to
use it on myself. I did remember.
“So I asked the woman nurse B-, Ba-, whatever, I asked her if she thought I should take
that shot to help with diabetes.”
“I-n-s-u-l-i-n?”
“Yes, that! Exactly! Insulin. She said that I should check with the doctor but he didn’t say
anything about it. Just gave me pills. I think they’re for that diabetes.”
A phone call to Betsy or Betty or Barbara confirmed it. There had been no indicator at all
that Mom was diabetic, other than her insistence that the attending doctor understand that she
had a family history of diabetes. BetsyBettyBarbara had also explained that the video interpreter
explained all this to Mom.
The full story came together with a clap in my mind.
The video interpreter. We had been through this before.
“We have this labtop computer,” the nurse said.
Sweet country Betsy. Or Betty. Or Barbara.
“On that labtop is a camera that points at your mom and she can sign into it an’ the
interpreter can tell us what she’s trying to say,” the nurse offered. “An’ we can talk into it and
the man can tell her what we’re sayin’. An’ that way we don’t have to wait for someone to drive
down who can talk to her for us. It’s real amazing. Real convenient. We just love it.”
57
Mom hated it.
In fact, she had started a petition with the city’s Deaf Senior Citizen’s club to have the
hospital discontinue its use. Her complaints were as valid to the Deaf bluehairs as they were
completely unthought-of to the all-hearing hospital administration that contracted and paid for
them.
“The hospital is cheap – don’t care about us Deaf,” Mom demanded. “They need to know
and I’ll go up there. Fight with the owner if I have to.”
First, the interpreters were hard to see.
“They’re in a little, tiny screen just this big,” her hands created an inconceivably small
box in space. “You can’t see anything. Especially because I’m in pain and not wearing my
glasses and I can’t see what they are saying.”
“And,” she continued, “There is a bad glare. Hospitals are too bright – can’t see anything
on that screen because of the glare,” which she signed “BRIGHT-LIGHT SPLASH FACE.”
She also didn’t like that it was hard for her to understand in three dimensions. Mom’s
native language, lacking pronouns like “he” and “she,” relies on spatial relationships to fill the
gap. So BetsyBettyBarbara, who was standing on Mom’s right, gets placed there – in space – by
the interpreter. From that point on, all discussion about the nurse will reference that point in
space. For linguists, it is a feature that gives ASL a richness that makes it an interesting study.
However, for native signers, it is a crucial part of a three-dimensional language. Without it, Mom
and the other “Deaf bluehairs” – as I called them – were lost in two-dimensional space with little
context about who said what.
But worst of all, she hated the video interpreters themselves. But she loved making fun of
their bad haircuts or their overly expressive pantomime that suggested laziness.
58
“ASL-WEAK” she signed to me.
What I piece together from BetsyBettyBarbara was that the interpreter had relayed the
doctor’s congratulations that diabetes was perhaps the only checkbox she didn’t have to worry
about.
But somewhere on the journey from his lips, to the labtop, through the webcam, and to
Mom’s eyes, the richness of his message – to say nothing of the dry humor – was lost. A missed
exit on the information superhighway.
And that’s how Mom got a bad case of diabetes. In her head.
She had been seen two times for a similarly fictitious but nonetheless real-to-her heart
condition, although I didn’t report it to Paul. “Don’t worry, your heart is fine,” the thin
cardiologist-in-training had told her 6 months back.
We continued down the list to some of the nos – epilepsy, seizures, brain injury,
hallucinations. The irony of answering “no” to each of these while Mom twitched, jerked, and
screamed incoherently was not lost on either of us.
“Never?” he asked. “No known brain injury of any kind?”
I thought back to Mom’s story about the softball causing her Deafness.
“Nope.”
And just as quickly as he had pulled me from my laser-like focus on Mom’s twitching
mouth with his “May I ask you a few questions about her history,” Paul was gone.
I looked out the window as a blood orange sun retreated from a deepening cobalt sky.
The parking lights had come on, welcoming a hoard of gypsy grackles and the night bugs they
feasted on.
Where had the time gone?
59
Not just the last hour, but the last month since she first checked in to that ER? Why
hadn’t I rushed to her side this time when she said she was in pain and was going in to the
hospital for evaluation?
How had the three years since her liver diagnosis – the one that had brought us back
together after years of pain – how had it escaped with all the should’vedones of a lifetime?
How is it we were more present for each other in these last 34 months and now, watching
her body slowly swell and her mind melt away, I felt more alone than as a child, not seeing her
for years at a time.
I had gotten good at saying goodbye to Mom-Mom over the years. And even though a
great healing had recently come about for us – and although I couldn’t vocalize it or admit it to
myself – I still didn’t trust her to come back.
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CHAPTER 7: Split
“Tell her I said she doesn’t need to tell you any damn thing!”
Grandpa grabbed Mom by the wrist and squeezed her hands in a futile attempt at
silencing her. A golden pendant spun around to her back as she dramatically thrashed to break
free. As I stood in the entrance to our living room, I knew he wasn’t hurting her, but the
paleness of my grandmother’s face and the tears crashing down from bloodshot eyes belied the
“Everything is alright” that came from her painted lips.
Even though Mom didn’t live at the house anymore, the booze sometimes brought her
back.
She had a seeming unquenchable need to start fires in our living room. Drunk fights with
Grandpa over decades-old resentments. No-showing on extended family for Thanksgiving
dinner. Begging them and then me for money until her Social Security disability check came in
on the 3rd of each month.
“Jesse! Jesse!” she called out, waving her nose in lieu of free hands. “I need to talk to
you.”
Her voice had an authority reserved for scoldings. Grandpa turned her body away from
me, fighting with a child who, at five foot even, hadn’t grown much in stature or maturity since
middle school. Over her shoulder, she called out to her mother through furious tears.
“Ma-Ma! I need to talk to my son.”
Drunk, this time, I assumed.
• • •
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Things had changed since their divorce. Unburdened by my father – who had for so long
served as her drinking conscious, begging her to “just have one or two” – Mom had become less
and less of a fixture in our home. What had begun as an earnest attempt at forging a true parentchild bond soon dissolved into cancelled trips to the park, drunken collect calls from unfamiliar
phone booths, and promises that next time would be different.
Dad left 8 years into their marriage, ending what he would later call the “crazy times with
your mother.” He had endured her car accident, the police investigation, her suicide attempt, her
court-ordered attempts at sobriety, and surrendering custody of their son.
Each one a squarely landed blow to the image of a happy family he had fought so long to
hold together.
He was elated when Doris said she would marry him. Although he had been married very
briefly in his [20s?], it ended after only [PERIOD] when a fertility test suggested that he would
have a very hard time fathering children. While the doctor hadn’t confirmed its cause, my father
felt certain that the Polio virus that snatched away normal legs that could run and ears that could
hear had now taken his only chance at what he desired most – a family. His first wife, shadow in
our household by the time I came around, was so desperate to have children of her own that she
left my father rather than try the expensive and unguaranteed fertility treatments.
He never spoke about his first wife to me, but I know he replayed her decision and all of
its contingent whatifs and shouldhaves over and over in his mind. Creating a family – a normal
family, with a wife and children – would be the one place where he was on equal footing as his
hearing siblings, coworkers, and neighbors. And now that she was leaving, not only did he have
to face the world without prospect for a child, but completely alone.
As he had been on that first day at the Oklahoma School for the Deaf.
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As he had been on the day he decided to divorce Mom.
• • •
The window was open and a slight breezeflutter tickled the white lace curtains Grandma
had hung behind the recliner. A glass of ice tea sat neatly on a round coaster, the beads of
condensation gaining increasing momentum as they raced toward the cork mat. Apart from the
assault of flailing signs and four-letter hand grenades, it might have been an otherwise peaceful
Spring weekday.
He still had her wrists in his hand when she said “I don’t give a S-H-I-T, Daddy,” yelling
as she tried to get out the letters. Grandpa hadn’t even learned the alphabet in his 40 years of
parenting a Deaf child, but he had learned her voice as well as anyone.
“Now, won’t anybody … No-body … I won’t be talked to like that in my own damn
house,” he finally commanded. “Do you understand me, Doris? Do you … understand … me?”
Without a sound or an acknowledgement, Grandpa turned to me.
“Jesse Jr., you go to your room.”
I was perched on the edge of the recliner so that a little push from Grandma’s lace
curtains would have toppled me to the floor. Grandma was heaving great sobs from the kitchen
table, inconsolable and pausing only to allow heavy gallons of air into her lungs.
I wasn’t going anywhere and there wasn’t a free hand to make me.
“You don’t rule-y me any more, Daddy,” she screamed, wrestling her hands from his
charge. “You don’t rule-y me.” Her mispronunciations were usually met with good-hearted
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laughs or impromptu speech lessons from her parents, but this time her error – rule-y – went
uncorrected.
Her shoulder-length, silkfine brown hair was now completely covering her face. Grandpa
reached for her hands again, but this time she swung them out so quickly and carelessly, I was
sure she was about to clock her father.
I had never seen him hurt anyone, but he had more than a foot on her and was twice her
weight – hitting him wouldn’t have been wise or productive. The fact that she wouldn’t stop
talking and leave his house put her in a big enough danger. East Texas taught him that never –
under any circumstances – does a man hit a woman.
Chivalry or chauvinism – it was the only thing keeping her on two feet.
“Doris, now you’ve done enough. It’s time to go home,” Grandma yelled through tears
near my chair, startling me. She cupped a cold hand under my arm, raising me off the chair with
a simple force. “Jesse, go get in your bedroom rightnow.”
But before I could shift my weight to move, Mom lunged at me. Her weight, combined
with my fear and the suddenness of her action pushed me back down deep into the recliner.
Her countenance wild and her eyes locked with mine. Over indiscernible threats from my
grandparents and an orchestra of discordant sobbing, the rest of the world went blank.
“I need to tell you about your Daddy.”
• • •
Doris might not have been his first choice, but the child they were expecting was the sign
he needed that this was the family he was meant to have.
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That Doris was now carrying a child – his miracle child – finally validated his desire for
an ounce of normalcy. Her growing belly was a reminder of the perfectly average life he
imagined for them.
They spent more time at home than before, planning and discussing and preparing for my
arrival. They were married by the Justice of the Peace, a short man with wispy white hair, and
started attending services at the Baptist Church for the Deaf, at Mom’s insistence.
Mom said she didn’t drink or smoke the entire time – in part because she was scared of
hurting me and in part because she was scared Grandma would hurt her. Late nights at Peg and
Ron’s house gave way to morning sickness and afternoon naps. My father earnestly supported
his new wife – imperfectly, at times, as all spouses do, but, as they both agreed even after their
divorce, to the best of his ability.
He decided on naming me James Edward Harris. James after his oldest sibling, who died
as an infant. My father felt it a fitting tribute to the hearing brother he never knew, Mom felt it a
bit morbid. When I was born, she convinced her husband that in addition to giving me his middle
name, Edward, they should also give me his first name. After getting her Mom’s blessing –
Grandma, by custom or fiat, had to approve everything about Mom’s first child – they settled on
my name.
Jesse Edward Harris, named after my father. His father, the first Jesse Edward Harris, had
died early in his childhood. Passing it down would be a tribute to the father he never knew and
would go a long way toward fill the emptiness after his first divorce. Despite her leaving him, his
Polio-ravaged body, or what anyone in the Hearing-World thought, Jesse Sr. had secured his link
to the chain of humanity.
And he was starting over.
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• • •
I was midway through the 5th Grade, a bookish and achievement-oriented student. Our
living room was more often covered with old encyclopedias and art supplies than toy guns and
video games. An honors student from the get-go, my grandparents stressed the importance of
listening to teachers and doing my best.
“Lord Jesus, just don’t be like your mother,” was Grandma’s constant refrain. It was the
mantra by which I led my life – don’t drink, don’t do drugs, do as you’re told. I had seen enough
of the consequences of Mom’s behavior to not start what she could no longer stop. Her parents
loved her, but felt deeply that they had somehow broken their only daughter. In me they saw a
chance at redemption and forgiveness – both to and for their daughter.
A chance to get it right.
In the corner, over Mom’s right shoulder, was a wall of my school portraits. The frames,
some wooden, others gilded, had been as dutifully selected by Grandma as the pressed plaid
dress shirts and khaki slacks I wore in each photograph. Below this shrine to her grandson, and
resting carefully on the second level of a round, awkward shelf, was a stuffed elephant my father
had won in a crane game. A gift from one of his court-approved visitations, Grandma let me
proudly display it among the brass vases, crosses, and doilies that decorated her otherwise
pristine Southern home.
Mom’s eyes were as hollow as they were severe as she stared with blankfilled intensity.
She was close enough to my face that I could smell no trace of alcohol, or marijuana, her latest
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go-to when things got stressful. Only when I noticed a drop following a well-worn path on her
face did I realize that she, like Grandma, had been crying during the whole fight.
“What’s wrong?” I signed, voiceless, making a “Y” handshape on my chin. Then,
twisting parallel index fingers toward the ground, my hands asked, “What happened?”
Grandma and Grandpa, despite their earlier insistence that whatever she wanted to say
was best left unshared, now fell quiet. Grandpa pivoted slightly toward the door, a final act of
defiance.
A breeze spun in the living room, churning the air and the emotions of the four people
who each sat crying in bentbroke positions.
A collective deep breath.
I drew five extended fingers to my forehead, then squeezed them together, open palmed,
and cut across the other hand: “Daddy. Alright?”
She looked away, quickening my heart.
He was dead, I knew it.
Since our neighbor, Mrs. Coral, passed away from XXX almost a year ago, I began to
obsess about how I would react when – and not if – someone would die and leave me. The
Corals, like my family, moved into the neighborhood after enrolling their only daughter at the
School for the Deaf. She and Mom were friends for a few years, but as mom got involved with
parties and wild friends, Dawn threw herself into academics. She went on to become a teacher
and principal of the school for the Deaf, and her support helped keep Mrs. Coral in the
neighborhood rather than a nursing home. She passed peacefully in her sleep, Grandma told me,
pushing the tears from wet eyecorners. Now, I was convinced, Mom was here to give me the
same speech Dawn had to give to her young children a few months earlier.
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“Daddy O-K,” Mom signed each letter slowly, as if I might misunderstand. “Daddy. OK.”
She looked over her shoulder at her parents for reassurance. Seeing for the first time that
evening their hurt faces, she rested her head on my knees and began to wail in uncontrollable
grief.
• • •
There hadn’t been an explosion or a scandal that pushed him to file for divorce; the
uncertainty, the insanity – it had all just become too much.
She had probably been on a tear that night, fueled by a half-case of lukewarm
Budweiser’s at Ron’s house. It had become more and more of a refuge for her since Dad started
to work more overtime at the bakery. She would become increasingly resentful about
decreasingly important things: Not enough money to buy a new dress, not refilling the
dishwasher, leaving fingernail clippings on the sink. And as she dug in deeper, my father drifted
away. Overtime, late-night horror movies, Space Invaders: Each offered a reprieve from the
constant pestering.
As the complaints got louder, he pulled back more. My father’s avoidance gave Mom
even more reasons to escape into the smoke-filled living rooms of Ron and other friends. Her
absence confirmed for him that now their son was gone, she wasn’t interested in playing house
with him any longer.
It was, like so many things in her life, an unyielding cycle that ended with regrettable
results.
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In the middle of an argument over nothing extraordinary – maybe it was the way he
grilled the steaks or the movie he put on – she dug in one final time, expecting another round.
But he had heard enough.
“FISH,” he cried. The five fingers on his right hand were outstretched and waving left
and right in her face. “FISH!” he yelled at her, a popular Deaf-World gloss for the word “finish.”
It meant “Get out of my face with this! I don’t want to hear any more.”
She was shocked to get a rise out of him so soon in their carefully choreographed routine,
but was taken aback when he raised from the couch and made for the bedroom.
She chased him around the corner and down the hall of the same 2 bedroom apartment
they had kept – “In case you want to move back in with us,” she told me – and followed him into
the bedroom. He took two paces into the room, stopped, and spun around on his heel.
He was crying.
“FISH, FISH, FISH. Done.”
• • •
“Dead? Oh, no, sweet child, your father is very much alive and he loves you very much.”
Grandma’s words were little comfort as my Mom was now disintegrating into grief in my lap. I,
too, was shaking in tears, taking deep gulps of air to breathe.
Grandpa appeared behind Mom and lifted her off my legs. Silently and gently, he put a
hand on my shoulder and shook a finger at his daughter.
“Now, goddamnit, you tell him if you’ve made up your mind to, you’ve scared him half
to death.”
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She rolled her eyes as would a scolded teenager, shaking her head to herself. Grandma,
whose face and eyes were red as the tomatoes in her garden, nodded reassuringly at Mom.
“Jesse Harris, Sr.,” she started, “Jesse Harris, Sr., your father, well …” she began to turn
away toward her mom when something pulled her back to me. She inhaled and exhaled for
twelve men. All three sets of eyes looked at me for the first time that evening.
Thumb drug under he chin toward me. Index finger rubbed upward toward her nose. Five
open fingers, her thumb touches her head.
With that, she changed my life forever.
“Not true father.”
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