“I told myself, I don’t care how ugly and hard caregiving can be. It’s okay because I’m writing these poems. It’s the process of giving life to something versus the process of dying.” ~ Frances H. Kakugawa
Last week I read a poem that stopped me in my tracks.
It was written in the voice of an Alzheimer’s patient and reminded me of my Auntie Ella, who suffered from dementia. Some of you may remember my Thanksgiving post from a few years back, where I mentioned how grateful I was to have seen her in Hawai’i just two weeks before she died.
It was of course heartbreaking that someone I had been close to for so long didn’t recognize me at all. Instead of the always-up-to-something, forever baking, reading, and talking-a-mile-a-minute aunt I’d grown up with, I saw a faraway stranger wholly dependent on her son, the victim of a baffling disease that daily threatened her human dignity and robbed us of a beloved member of our family.
“Emily Dickinson, I Am Somebody” was written by Hawaii-born author, poet, teacher, and speaker Frances H. Kakugawa, who served as primary caregiver to her mother, Matsue, for five years. She graciously granted me permission to share her poem today and had this to say:
One word kept flashing before me as I cared for my mother who was losing herself to Alzheimer’s disease. The word was Dignity. This word clarified for me what caregiving was all about. If I could believe that above everything else that was going on, if I honored human dignity in both my mother and myself, then this journey would be one of compassion, love and dignity.
One day I looked at her and wondered what she would say if she could speak. I took poet Emily Dickinson’s lines, “I’m nobody, are you nobody, too?”, and used my mother’s voice in this poem, “Emily Dickinson, I’m Somebody,” to remind me that she is still there, without voice and bodily functions, she is still there, and deserves my own humanity.
My own words from this poem would come to haunt me when things got really difficult and put me right back on track.
Emily Dickinson, I Am Somebody
by Frances H. Kakugawa
If I could speak, this is what
My voice would say:
Do not let this thief scare you away.
Do not let this thief intimidate you
Into thinking I am no longer here.
When you see me, tell me quickly who you are.
Do not ask me, “Do you know me?”
Help me retain my own dignity by not forcing me
To say, “No, I don’t know who you are.”
Save my face by greeting me with your name
Even if the thief has stolen all that from me.
It shames me to such indignities to know
I do not know you. Help me
In this game of pretension that the thief
Has not stolen your name from me.
My words have all forsaken me,
My thoughts are all gone. But do not
Let this thief forsake you from me.
Speak to me for I am still here.
I understand hugs and smiles and loving kindness.
When I soil my clothing or do something absurd,
Do not ask me “Why didn’t you?”
If I could, I would.
I know I have turned into a monstrous baby,
If I could, I would not allow this thief
To let you live and see what he
Has stolen from me.
I know my repeated questions
Are like a record player gone bad,
But my words are gone and this is
The only way I know to make contact
With you. It is my sole way of saying,
Yes, I know you are here. This thief has stolen
Everything else except for these questions
And soon they, too, will be stolen away.
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.
~ from Mosaic Moon (Watermark Publishing). Copyright © 2002 Frances H. Kakugawa. All rights reserved.
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Because journaling and writing poetry became her saving grace, helping to ease the heavy burden of caregiving, Frances founded a writing support group for the Alzheimer’s Association-Aloha Chapter in 2002. She worked with caregivers who’d never written poetry or even attempted any other form of creative writing before and helped them harness the power of the written word to heal and transform.
They embarked on a spiritual journey born in the depths of despair, overwhelmed at times by fear, sadness, guilt, anger, self pity, frustration, resentment and helplessness. Every aspect of whom they once thought they were was tested and they found the courage to write about it. They gradually moved toward enlightenment as they discovered their truest selves, reborn as strong, compassionate poet-caregivers.
Frances once said, “Each time I wrote a poem, I felt it was a gift from my mother and Alzheimer’s. Each time I wrote a poem, it was a step toward the divine.” She believes that “the golden rule of caregiving is to take care of yourself first.” Writing is a way of “transcending the burden of care with love, understanding and kindness.”
Today, Frances lives in Sacramento, California, where she leads yet another writing support group for caregivers. She also conducts poetry writing workshops for both children and adults and presents lectures at conferences around the country.
She’s published three books on the subject: Mosaic Moon: Caregiving Through Poetry (Watermark Publishing, 2002), and Breaking the Silence: A Caregiver’s Voice (Willow Valley Press, 2010) contain poems, journal entries and stories by Frances and workshop caregivers, as well as practical advice for novice poets seeking solace, strength, support, and inspiration for their own journeys.
Wordsworth Dances the Waltz (Watermark Publishing, 2007), is an award-winning picture book that helps children better understand behavioral changes and/or memory loss experienced by their grandparents or other family members. It is the second in a series of picture books featuring Wordsworth, the poetry-writing mouse, and I’m pleased to share that Frances will stop by Alphabet Soup during April to tell us more about him.
If you’re reading this today, chances are good you know someone affected by Alzheimer’s or another long-term illness. Though it’s sobering to think that someday we might find ourselves as either patient or caregiver, it is reassuring to know that for Frances and her fellow caregivers, poetry helped them hold onto themselves and survive the experience, a true testament of its cathartic, therapeutic power and the durability of the human heart. As one reviewer said, “memories may wax and wane, but love endures.” As Frances says, “Art in whatever form puts us in touch with our humanity.” I can’t think of a better reason to write.
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♥ Read this post from Frances’s blog, which includes another poem she wrote about her mother. It kills me with its unadorned beauty and poignancy.
♥ Visit Frances Kakugawa’s website for information about all her books. Besides these three caregiver books, she’s published four volumes of poetry, a memoir, two other Wordsworth books, and a book just for teachers. 🙂
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The eminently talented Heidi Mordhorst is hosting today’s Roundup at My Juicy Little Universe. Be sure to check out the full menu of poetic goodness being served up in the blogosphere this week, and enjoy your weekend!
Copyright © 2013 Jama Rattigan of Jama’s Alphabet Soup. All rights reserved.