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review by R.K. Singh

Breaking the Silence: A Tribute to Sufferers of Alzheimer’s and Their Caretakers


by Frances Kakugawa

 


Despite striking achievements of science and technology, the problems of human life and
destiny have not ended, nor have the solutions been seriously affected by scientific
knowledge. Alzheimer’s disease, which currently affects about 10% of people over 65
years of age and 50% of those over 85 years of age, has no cure. As many as 5.3 million
Americans are now living with the devastating disease. According to a study, unless new
treatments are developed to decrease the likelihood of Alzheimer’s disease, the number
of individuals with Alzheimer’s disease in the USA may rise to 14 million by the end of
the year 2050.

Read against this background, Frances Kakugawa’s book, a mix of poetry, story and
practical guide, is a recognition of the services rendered by professional and voluntary
organizations that seek to minimize the pangs of Alzheimer’s sufferers as well as the
sufferings of their near and dear ones. It pays tribute to caregivers who have been
untiringly working for creation of a world without dementia, stroke, or cancer just as it
seeks to help them endure the innumerable crises of caregiving.
Breaking the Silence: A Caregiver’s Voicemerges Frances Kakugawa and her poet-

colleagues’ varied experiences with a broad human perspective, engaging both mind and
heart. The caregivers seek to share their compassionate spirit with a sense of gratitude to
all those who help the victims of Alzheimer’s disease negotiate their mentally vacant
existence. They are not only aware of the sufferers’ substantial loss of brain cells or
progressive decline in their ability to think, remember, reason, and imagine, or their
language problems and unpredictable behavior, confusion, or loss of sensory processing,
but they also know well how the Alzheimer’s victims suffer a sort of living death,
becoming a mere body stripped of its humanity. They have been witness to caregiving
family members of increasingly confused and helpless sufferers themselves often
becoming the disease’s exasperated and exhausted victims:

“ Is she the mom who nurtured me?
Is it the dementia playing havoc with my mind?
Or is this really my mom? I don’t know.”(‘More Glimpses of a Daughter and Mother’)
and“I am torn between two needy factions.
Mom unaware, daughter pushing all boundaries
Both out of control.”
(‘The Sandwich’)

For Frances Kakugawa, caregiving is a mission even as the memory and image of her
Alzheimer’s struck mother persists in her life as a “loud presence”. She gives voice to
many caregivers who are ever worried about their loved ones not even able to carry out
the simplest tasks and/or are completely dependent on others for their care. She
expresses the very haunting fear of death:

“Is she breathing? Is she alive?
Is she finally gone, freeing me once again?
I continue my sentinel watch.”
(‘Unspoken Mornings’)

Frances not only articulates their fear but also learns to negotiate it by boldly facing it as
part of life. In fact, she turns the metaphor of death as integral to life, be it in the form of
“an ache of emptiness”, “unfulfilled dreams”, or “unlived moments”. In her deeper
silences, she explores the very meaning of life:

“A second gust of wind
Lifts another fistful of ashes.
Be still and listen.”
(‘Song of the Wind’)
It is hearing the inner silence, which is something meditative, Biblical, and spiritual. It is
awaking to the self, the Holy Spirit, the Divine himself. When the soul peaks into silence,

human becomes divine. She sounds earnest and exceptional, seeking harmony with the highest ideals, irrespective of chaotic personal experiences. As Setsuko Yoshida says in ‘Can I?’ :

“Poems by Frances this morning
Reveal the feelings of ‘divine’
In caregiving.”

In fact, as women poets, Frances Kakugawa and her caregiver colleagues (Elaine
Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) present a feminine and yet
very humane perspective to the dementia-related illnesses. Jason Y. Kimura, Rod
Masumoto, and Red Silver, though male poets, demonstrate the ‘Prakriti’ or ‘Yin’ aspects
in rhythm with other contributing caregivers’ sensibility. They variously turn the
Alzheimer’s into a metaphor for the loss of language, the loss of memory, and the loss of
voice. Their poetry, often brief and personal, and rich and insightful, becomes a means to
communicate the sufferers’ loss of feeling, love, dignity, honor, name, and relationship;
in short, their isolation, or threat to living itself:
“All my life I have lived

With crayons in one hand,
Filling in spaces,
Spaces left by departed lovers, family, friends,
Leaving me crayons smashed against walls
Creating more grief than art.”
(‘Empty Spaces’)
They also use the metaphor for challenge to survive, to exist, without fears and anxieties:

“I am woman,
Suppressed,
Dying.”
(‘Nissei Woman’)
and

“I am not merely heaven, man and earth
Rooted by cultural hands.
Sift those sands. Yes!
I am free!

I am tossed into the winds.
I shed my kimonos.
I spread my legs.
I am free.”
(‘Lesson #3’)
and

“When I am 88
I will still be woman,
Yes!”
(‘’When I am 88’)
and

“I am still here
Help me remain a human being
In this shell of a woman I have become.
In my world of silence, I am still here.
Oh, I am still here.”
(‘Emily Dickinson, I am Somebody’)

They convert the Alzheimer’s into a search for reprogramming the mind, the thought, and
the attitude to overcome the irreversible suffering and helplessness. As Frances very
feelingly asserts: it is the search for

“…the same umbilical cord
That once set me free
Now pulls and tugs me back
To where I had begun.

There must be hidden
Somewhere a gift very divine
In this journey back.”
(‘Mother Into Child, Child Into Mother’)

They are true to themselves as they voice their search for the whole. With an empathetic
awareness, they disclose their innate goodness, trust, and compassion to make a
“symphony of truth.” At the core of their musing lies a desire to integrate themselves, to
live in time as well as in eternity:

“What other path is there
Except the divine
Where love, kindness, compassion,
Help me discover little pieces of myself
That make me smile
Bring me such quiet joy
At the end of each day.”
(‘Bless the Divine’)

They reveal the working of the primal impulses of the human soul which rises above the differences of race and of geographical position. In short, they give vent to the thought of all people in all lands.

As poet-caregivers they cope with their tensions, fears and anxieties through
introspection, and accommodate their inner and outer conflicts, sufferings and
celebrations through imaginative insight. They mirror the broad social or familial
conditions as well as their own personal state with perceptions that are often different
from those of the male poets (or male caregivers). Their quest is for real reality vis-à-vis
degeneration, privation, insecurity, helplessness, anonymity, and death. They search for
life and live with awareness of what lies beneath the skin of things around, the psycho-
spiritual strains, the moral dilemmas, the betrayals, and the paradoxes:

“Why do you say I am sacrificing
Good years of my life
For caring for my mother,
When it shouldn’t be a secret
That I am really living
In a way I have never lived before?
…No, this is not sacrifice.
It is just reality.
I am really living
In a way I have never lived before.
I am living love.”
(‘What I Know’)

Against the complexities of experiences, they demonstrate a sense of values such as love,
faith, truth, tolerance, patience, peace, charity, harmony, humility, and healthy
relationships. They tend to think intuitively and/or turn personal, inward, spiritward, or
Godward, without indulging in intellectual abstraction. They write with poetic
sensibility. Their metaphors and images reflect their inner landscape as much as their
responses to what they observe or experience externally. They are often reticent and
honest in their verbal expression, and their inner vibrations touch or elevate the readers’
senses. As they create discourse of themselves as caregivers, they also sound committed
to their home, family, children, motherhood, and neighborhood, often voicing their own
vision and understanding which cuts across cultures and regions.

They seek to transcend their body or feminity and respect the woman in themselves, even
if affected by the Alzheimer’s environment. They turn inside out and reveal what is
personal yet universal in their different roles as mother, wife, daughter, and feel the
agony of the spirit while trying to know “Who I am?”, or “How I should live, who I
should be”, or “What am I looking for? Why did I come?”

As they look back or reflect their present, they also voice the need for strong sense of togetherness vis-à-vis their inner conflicts, spiritual hunger, loneliness, or dependence. They sound challenging the Alzheimer’s itself:

“You could not rob us, though we forgot.
You could not erase us, though we could not write.
You could not silence, though we could not speak.
The stories, the laughter, the moments that passed
Into their keep, you could not steal
Into a night of silence.”
(‘Hey Alzheimer’s’)

As they fill one with hope for ageing with grace and dignity despite the challenges of loss, they create an alternative motive and impulse for social action at a very personal level:

“Through this deepest darkened night
I will hold the light
To take away all your fears.
Just know I will always be near.”
(‘To My Mother’)

There is an urge for changing the situation for themselves, or for being in peace with
oneself. The poets and caregivers of Breaking the Silence seek to create a new culture as
they rationalize how we ought to live in future.

Work Cited
Kakugawa, Frances H. Breaking the Silence: A Caregiver’s Voice. Nevada City,
California: Willow Valley Press, 2010. Print. (All references are from this book).

Breaking the Silence at amazon.com




--Dr. R.K. Singh

Professor of English and Head
Department of Humanities & Social Sciences
Indian School of Mines
DHANBAD 826004, India