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by Holly J. Hughes

Beyond Forgetting

My mother died of Alzheimer's disease at dusk on the last day of April in 2001. At 75, she was still in good physical health--she had danced a polka just a few weeks before--so her death from this disease seemed all the more tragic. For my family, her illness had been a slow process of subtraction, as we lost her one brain cell, one synapse at a time. She had been an articulate, vivacious woman, and we had to watch her lose not just her memory but all that went with it--intelligence, judgment, dignity--all that we believe makes us conscious human beings. As the disease took away more and more of the person I'd known as my mother, I had to look hard to see what was left. I tried to be with her where she was, but she drifted out of reach of reason, of our accepted ways of being in the world. How could I stay beside her in this journey? Words may have failed her, but I still had them. As with any grief that feels unspeakable, I turned to poetry.

Gradually, the practice of writing gave me entry into another world, a world larger than the small room where my mother's life ended. Writing poems made it possible to see that even in the darkest stretches, there were still moments of grace: her delight in seeing the scarlet flash of a cardinal at the feeder; rare glimmers of recognition in her blue eyes; funny conversations as the letters of her alphabet piled up. The losses may have been beyond imagining, but so were the unexpected gifts. Because she no longer had a past or future, she showed us how to live in the present.

Writing poems became a way to witness honestly while reminding me to dwell in the present alongside my mother. In our culture, we often talk about dementia only in the abstract, as a label, not in all its bittersweet concreteness. Many of us grew up hearing about relatives who, approaching the end of their lives, were "not quite there," "a little off," "touched." Now, because it is touching so many lives, Alzheimer's disease forces us to acknowledge it. I looked for other writing that might help me through this uncharted terrain. Each time I found a poem in which it was clear the writer also knew this territory I felt less alone. When I began to share the poems I'd written about my mother at readings, I came to realize how prevalent this disease is by the fact that a knot of people always gathered afterward to tell the story of their mother, father, husband, wife, sister, brother.

I began envisioning a collection of poems that might serve us all. I mentioned this idea to a few friends, who encouraged me to pursue it. I was, however, teaching full time and enrolled in a low-residency MFA program, so set the project aside until I had more time. One day, at lunch outside on an unseasonably warm February day in Port Townsend, what was just an idea shifted decisively toward reality. Judith Kitchen suggested I contact Edward Hirsch, whose moving poems about his father were among those that had given me solace. That same week, Tess Gallagher, who was caring for her 91-year-old mother with Alzheimer's, generously offered to write the foreword. Instead of a project I could do someday, this book became a project I would do now.

The response to my Internet call for submissions was immediately affirming; within days I received poems and essays from all over the United States, as well as India, France, Italy, and England. I wasn't prepared for this tidal wave. The hours between 11 p.m. and 1 a.m. became surreal, as I read poems that echoed my experience with my mother, essays so moving I was often in tears. When I wondered why I'd embarked on this project, I'd read another letter, which ended with the words: Thank you for doing this. It is much needed.

As the deadline approached, e-mail messages stacked up in my inbox, manila envelopes piled high on my desk: poems and essays from husbands, wives, lovers, sons, daughters, sisters, brothers; poetry and prose from hospice workers, psychiatrists, doctors, nurses. Some wrote about caring for those with Alzheimer's disease, some had the disease; some experienced it, some imagined it. In painful, haunting detail each told of a journey, an experience that became more universal with each person's telling. As I read each piece, I began to better define what I hoped this collection would be able to do: to illuminate all the facets of this disease. The aim was made clear when one writer inquired whether she should send poems about the hard times or the good times. Both, I responded. We need both.

By the time the deadline came at the end of July, we'd received close to 500 submissions of poetry and prose. I assembled an editorial team to help make the difficult choices. As we sat in my backyard one hot August day passing stacks of poems and essays among us, it was difficult not to feel overwhelmed. We wanted to encompass the whole range of the experience, to hear from as many voices as possible. We wanted to include writing not just of published poets, but of the people who know this disease intimately, the caregivers who've made it their calling. In the end, we chose pieces that portrayed the full spectrum of the experience: anger, frustration, despair, humor, tenderness, compassion. Because I was so often moved by the specific details in the cover letters, details that might help those who were caretakers, I asked the writers to provide a few sentences as context for the reader.

After the editorial team had made its choices, I retreated to Sky House on the Straits of Juan de Fuca to see how all the pieces might fit together. To the steady beat of waves against a rocky shore, I began to assemble the manuscript, finally able to see more clearly the many themes braiding through it. While the voices are strong, distinct, and each person's experience singular, I could see how the poems connected with each other and, I hope, with the reader's experience. I chose to group the poems and prose in thematic sections in an effort to make it more useful, and also allow the many haunting images to surface, sometimes next to each other, sometimes later in the collection, like an undercurrent.

In her essay, "Poetry and Uncertainty," Jane Hirshfield writes of the role of poetry in allowing us to enter into the unknown: "Poetry comes into being as a response to a kind of fracture of knowing and sureness: from not understanding, yet still meeting what arrives." The writers in this collection have done just that, meeting what arrives with courage and tenderness. Hirshfield also suggests how poetry might provide solace: "In entering the imaginative, metaphoric, or narrative expression of another, even if it is the expression of pain, longing or fear, you find yourself less lonely, accompanied in this life." This sentiment is echoed by Susan Ludvigson in the first section of her moving poem "Where We Have Come:"


To discover them

is to link with the unbroken

griefs we name and re-name...

to see loss

black on white

is to be comforted

a moment

in the early hours

not left alone.


In speaking with tenderness, these poems and essays remind us what we already know. As Linda Alexander writes in "Your True Life:"


Those who knew

you when your mind

tangled with a thousand

worries whisper behind

you, regret this stillness.

Yet here is your true life:

the bright, unruffled water,

a sudden lift of wings.


In speaking with honesty, these writers enable us to look more deeply, to see not just the tragedy of Alzheimer's disease, but its odd dignity, its unlikely beauty. As David Mason writes in "The Inland Sea:"


Their dignity another universe

might honor more than we do, seeing souls

where we see bodies falling into death....

Their beauty terrifies us, so we think

it like no beauty we have ever known

and leave them for the ordinary shore.


I hope that the poems and prose in this collection affirm what Hirshfield proposes: "That anxiety, grief and the fear of chaos can be turned into beauty, meaning, and the irrefutable pleasure they bring, is no small part of the mystery of what art does." Through this transformative power, and in their honest, compassionate portrayals, may the voices collected here illumine the darkness of this passage and help us see, as one writer put it, "the unlikely light that shines deep within it."