Book review:
Kakugawa, Frances H. Breaking the Silence: The Voice of the Caregiver. Nevada City, CA: Willow Valley Press, 2010.
Despite the amazing achievements of science and technology, the problems of human life and destiny are far from over, and the solutions have not been seriously affected by scientific knowledge. Alzheimer’s disease, which currently affects about 10% of people over 65 and 50% of those over 85, has no cure. As many as 5.3 million Americans are now living with this devastating disease. According to a study, unless new treatments are developed to reduce the likelihood of Alzheimer’s disease, the number of individuals with Alzheimer’s disease in the United States could increase to 14 million by the end of 2050.
Read against this background, Francis Kakugawa’s book, A Blend of Poetry, Story, and Practical Guide, is an acknowledgment of the services provided by professional and voluntary organizations that seek to reduce the pain of Alzheimer’s patients as well as the suffering of their near and dear ones. It pays tribute to the caregivers who work tirelessly to create a world without dementia, stroke or cancer just as it seeks to help them endure the countless crises of caregiving.
Breaking the Silence: Caregiver Frances Kakugawa’s voice fuses the experiences of her fellow poets with a broad human perspective, engaging both the mind and the heart. Caregivers seek to share their compassion and gratitude for all those who help Alzheimer’s victims negotiate their mentally empty existence. Not only are they aware of the significant loss of brain cells or the gradual deterioration in their ability to think, remember, reason and imagine, or their language problems and unpredictable behaviour, confusion or loss of sensory processing, but they also know very well how Alzheimer’s victims experience a kind of living death, becoming just a dehumanized body. They have been witnesses to how family members of caregivers of increasingly disoriented and helpless people often become the angry and exhausted victims of this illness:
“Is it the mother who took care of me?
Is it dementia that is damaging my mind?
Or is this really my mom? I don’t know.”
(“More Profiles of a Daughter and a Mother”)
And
“I am torn between two needy factions.
Unaware mom, her daughter is crossing all boundaries
They are both out of control.”
(‘the sandwich’)
For Frances Kakugawa, caregiving is a mission even as the memory and image of her Alzheimer’s-afflicted mother lingers in her life as a “bristling presence.” She gives voice to the many caregivers who worry about their loved ones who can’t carry out even the simplest tasks and/or are totally dependent on others for their care. She expresses her deeply agonizing fear of death:
“Is she breathing? Is she alive?”
Did you finally go, and set me free again?
I continue my guard watch.”
(“Unannounced Morning”)
Not only does Frances express their fears, but she also learns to negotiate them by facing them boldly as a part of life. In fact, the metaphor of death has become an integral part of life, whether in the form of “the ache of emptiness,” “unfulfilled dreams,” or “unlived moments.” In her deep silence, she explores the meaning of life:
Another gust of wind
She raises another handful of ashes.
Be still and listen.”
(wind song)
It’s hearing inner silence, and it’s something meditative, biblical, and spiritual. It is an awakening to oneself, the Holy Spirit, the Divine Himself. When the soul reaches silence, man becomes divine. She seems serious and exceptional, seeking harmony with the highest ideals, regardless of chaotic personal experiences. As Setsuko Yoshida says in May I?:
Francis’ poems this morning
reveal feelings of “divine”
in providing care.”
Indeed, as a poet, Frances Kakugawa and her fellow caregivers (Elaine Okazaki, Linda McCall Nagata, Eugene Mitchell, and others) offer a very feminine and humane perspective on dementia-related illnesses. Jason Y. Kimura, Rod Masumoto, and Red Silver, though male poets, show aspects of “Prakriti” or “Yin” in rhythm with the sensibility of the other contributing caregivers. They differently turn Alzheimer’s disease into a metaphor for the loss of language, the loss of memory, the loss of voice. Their poetry, often brief and personal, rich and insightful, becomes a vehicle for expressing the sufferer’s loss of feeling, love, dignity, honor, name, and relationship; In short, their isolation or threat of living on their own:
“I’ve lived all my life
with chalk in one hand,
Fill in the blanks ,
The spaces left by departed lovers, family and friends,
Leaving me smashed crayons on the walls
Create more melancholy than art.
(“blank spaces”)
They also use the metaphor to challenge survival and existence without fears and anxieties:
“I am a woman,
respression,
death.”
(“Onesie Woman”)
And
“I am not just a sky, a human and an earth
rooted in cultural hands.
Sift that sand. Yes!
I’m free!
The wind pushed me.
I got rid of my kimono.
Spread my legs.
I’m free.”
(“Lesson 3”)
And
When I’m 88 years old
I will remain a woman
Yes!”
(“When I’m 88”)
And
“I’m still here
Help me stay human
I became in this woman’s shell.
In the world of silence, I’m still here.
Oh, I’m still here.”
(“Emily Dickinson, I’m Somebody”)
They turn Alzheimer’s disease into research to reprogram the mind, thought, and attitude to overcome irreversible suffering and helplessness. As Frances emphatically emphatically: It is the search for
“…the same umbilical cord
Once you set me free
Now he pulls me and pulls me
to where it started.
There must be hidden
Somewhere a very divine gift
On this return trip.
(“mother to child, child to mother”)
They are true to themselves because they express their search for the whole. With their empathic awareness, they reveal their innate goodness, confidence, and compassion to create a “symphony of truth.” The essence of their thinking lies in the desire to merge and live in time as in eternity:
What is the other way out there?
Except divine
Where love, kindness and compassion
Help me discover little parts of myself
This makes me smile
Bring me such quiet joy
At the end of each day.”
(“Bless God”)
They reveal the workings of the primal impulses of the human spirit that rise above distinctions between race and geographic location. In short, it is the catharsis of thought for all people in all countries.
As nurturing poets, they address their tensions, fears, and anxieties through meditation, and internalize their inner and outer struggles, sufferings, and celebrations through imaginative insight. They reflect broad social or family circumstances as well as their own personal condition with perceptions often different from those of male poets (or male caregivers). Their pursuit of true reality in the face of degradation, deprivation, insecurity, powerlessness, anonymity, and death. They seek life and live with awareness of what lies under the skin of things around them, psychological and spiritual tensions, moral dilemmas, betrayals, and paradoxes:
“Why do you say that I sacrifice?
good years of my life
to take care of my mother,
When it shouldn’t be a secret
I really live
In a way I’ve never experienced before?
…
No, this is not a sacrifice.
It’s just a fact.
I really live
In a way I’ve never experienced before.
I live love.”
(“I do not know”)
In the face of the complexities of experiences, they display a sense of values such as love, faith, truth, tolerance, patience, peace, love, harmony, humility, and healthy relationships. They tend to think intuitively and/or turn to the personal, inner, spiritual or divine, without indulging in intellectual abstraction. They write with poetic sensitivity. Their metaphors and images reflect their inner view as much as their responses to what they observe or experience externally. They are often discreet and sincere in their verbal expression, and their inner vibrations touch or heighten the readers senses. As they create a discourse about themselves as caregivers, they also appear committed to their home, family, children, motherhood, and neighborhood, often expressing their own vision and understanding that cut across cultures and regions.
They seek to transcend their own body or their femininity and respect women as such, even if they are affected by the environment of Alzheimer’s disease. Turning inside out and revealing the personal yet universal in their various roles as mother, wife, and daughter, they feel the anguish of the soul as they try to figure out “Who am I?” , or “How should I live, who should I be,” or “What am I looking for? Why did I come?”
When they look back or reflect on their present, they also express the need for a strong sense of togetherness over their inner struggles, spiritual hunger, loneliness, or dependency. They seem to defy Alzheimer’s disease itself:
“You cannot rob us, though we have forgotten.
You can’t erase us, though we can’t write.
You cannot be silent, although we cannot speak.
The stories, the laughs, the moments passed
In their possession, you cannot steal
In a silent night.
(“Oh Alzheimer’s”)
While they fill one with hope for aging with grace and dignity despite the challenges of loss, they create an alternative drive and motivation for social action on a very personal level:
During this darkest, deepest night
I will carry the light
To take all your worries away.
Just know that I’ll always be there.”
(‘to my mother’)
There is a drive to change the situation for themselves, or to be at peace with themselves. In Breaking the Silence, poets and caregivers seek to create a new culture where they justify how we should live in the future.