Us Against Alzheimer's

by Marita Golden

  When people disparaged your birth country, you would hush them with the same detailed lectures you spent decades perfecting at the university. It pleased you to impart knowledge to thousands of wide-eyed students who adored you.

  The history of beloved Haiti is no longer with you, is it? You’ve forgotten the names of the founding fathers and mothers. I watch as you search your mind for answers to questions you once formulated, but nothing comes. Our fifty years together have plummeted irretrievably into a murky pool at the bottom of a canyon, but I dare not ask you to reach that far into the unknown. It would not be safe. I would reach in, but my arms are useless unless you are in them.

  The doctor says it’s not unusual for someone with this condition to forget his or her own name now and again. Why should he expect you to remember your name, when I spent decades calling you Sweetheart, Darling, My Love—anything but the one on our marriage certificate?

  Those hundred witnesses at our wedding fifty years ago are not here, but I am and always will be. There are no groomsmen today. No bridesmaids. I want to play our song, but I had trusted you to remind me of the melody.

  I will wait for you at this altar in silence, praying that you will have a change of heart and emerge from the labyrinth where you reside now. I will wait until you return—if only for a brief moment—to dance with me to the rhythm of our hearts.

  CONTRIBUTOR BIOGRAPHIES

  Bari Diane Adelman is a writer with the soul of a social scientist, as reflected in her academic degrees. Her passion for observing and documenting the quirks of human behavior keeps her endlessly entertained. Whether she’s writing about business, health, or family, she does it with true fondness and empathy for her subjects.

  Malaika Adero is coauthor of The Mother of Black Hollywood by Jenifer Lewis and Speak, So You Can Speak Again: The Life of Zora Neale Hurston by Dr. Lucy Hurston and author of Up South: Stories, Studies, and Letters of This Century’s African-American Migrations. She founded the book development firm and literary agency Adero’s Literary Tribe, LLC. She lives in New York City.

  Cathy Alter’s articles and essays have appeared in O, the Oprah Magazine; Martha Stewart Living; the Washington Post; Washingtonian; the Atlantic.com; Kveller; and the New York Times. She is the author of Virgin Territory: Stories from the Road to Womanhood, the memoir Up for Renewal: What Magazines Taught Me about Love, Sex, and Starting Over, and CRUSH: Writers Reflect on Love, Longing, and the Lasting Power of Their First Celebrity Crush. A version of her story was published in Washingtonian MOM.

  Jane Bandler spent thirty years traveling around the world as the spouse of a Foreign Service Officer, living in London, Ireland, Nigeria, Cameroon, Paris, Bonn, and Cyprus. During those various assignments and in Washington, DC, she pursued a twenty-five-year career as a Montessori Preschool Director. She retired to take care of her husband after his diagnosis of early-onset Alzheimer’s disease and is the proud mother of three grown children and grandmother to three young grandsons.

  Tina Jenkins Bell, a Chicagoan, writes short and long fiction, creative nonfiction, and plays. With two other writers, she recently created “Looking for the Good Boy Yummy,” a collaborative-hybrid short story that recounts the last days of Robert Sandifer, a young boy killed by his own gang (Black Lawrence Press, 2018).

  Danielle C. Belton is editor in chief of the leading black website The Root. A St. Louis native, she has written in the past for the Washington Post, the New York Times, the Daily Beast, Essence magazine, American Prospect, and numerous others. A version of her story was published in The Root.

  Cathie Borrie trained as a nurse in Vancouver and holds a Master of Public Health degree from Johns Hopkins University. She also graduated from the University of Saskatchewan with a degree in law, and she has studied creative writing at Simon Fraser University. She lives in North Vancouver.

  Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a long-time newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She has also contributed to numerous other books covering caregiving and dementia.

  Susan Kim Campbell is a writer of fiction and nonfiction. Her work is published in the Alaska Quarterly Review, Meridian, SmokeLong Quarterly, and the Mississippi Review.

  Meridian commended her story as runner-up in their 2017 contest. Susan has been awarded artist residencies to the Millay Colony, Hedgebrook, the Anderson Center at Tower View, and others. She has won fellowships to the Writers @ Work Conference, the Tomales Bay Writers Conference, and the Norman Mailer Center. She holds a BA from Brown University. Visit susankimcampbell.com.

  Meryl Comer is a cofounder of UsAgainstAlzheimer’s, WomenAgainst-Alzheimer’s, and the Global Alliance on Women’s Brain Health. From 2007 to 2019, Ms. Comer served as president and CEO of the Geoffrey Beene Foundation Alzheimer Initiative. She serves on the NIH National Advisory Council on Aging (NACA). She is a veteran broadcast journalist. One hundred percent of proceeds from her New York Times bestseller, Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s, supports Alzheimer’s research.

  Edwidge Danticat is a Haitian-American novelist and short story writer. She is the acclaimed author of many books, including The Dew Breaker; Breath, Eyes, Memory; and Brother, I’m Dying. She has won many honors, including the American Book Award and the National Book Critics Circle Award.

  Heather L. Davis is a mom, writer, and communications professional. She holds a BA in English from Hollins University and an MA in creative writing from Syracuse University, and has published poetry, fiction, and nonfiction in a variety of journals. Her book The Lost Tribe of Us won the Main Street Rag Poetry Book Award. She lives with her husband, the poet Jose Padua, and their two children in Washington, DC. She was deeply impacted by her time as an in-home caregiver for patients with Alzheimer’s.

  Miriam DeCosta-Willis is a former educator and author or editor of fourteen books, including Blacks in Hispanic Literature, Erotique Noire/Black Erotica, The Memphis Diary of Ida B. Wells, Daughters of the Diaspora: Afra-Hispanic Writers, Notable Black Memphians, and Black Memphis Landmarks. She cofounded the Memphis Black Writers’ Workshop, was associate editor of Sage: A Scholarly Journal of Black Women, and editorial board member of the Afro-Hispanic Review. In her forty-year career in education, she was the first black faculty member at Memphis State University and retired from the University of Maryland, Baltimore County.

  Daisy Duarte is a patient and caregiver advocate for the LatinosAgainstAlzheimer’s Network, bringing a valuable voice to advocacy, policy, and research discussions about the growing impact of Alzheimer’s on the Latino community. Daisy is a caregiver for her mother, Sonia, who was diagnosed with early-onset Alzheimer’s at age forty-eight. Daisy tested positive for the gene linked to early onset Alzheimer’s disease in 2014 and is enrolled in the Dominantly Inherited Alzheimer’s Network (DIAN) clinical trial at the Washington University School of Medicine in St. Louis. As one of the few Latinos enrolled in Alzheimer’s clinical trial research, Daisy is committed to raising awareness of the importance of Alzheimer’s research and funding. According to Daisy, “It’s so important for Latinos and other minorities to engage in clinical trial research; we need to make sure that our communities have a voice in the research process. We have to take responsibility for our families and for ourselves.”

  Lauren Francis-Sharma is the author of ‘Til the Well Runs Dry, her first novel, awarded the Honor Fiction Prize by the Black Caucus of the American Library Association. She is the assistant director of Bread Loaf Writers’ Conference and is currently working on her sophomore novel, to be published by Grove Atlantic in late 2019.

  Lisa K. Friedman writes a regular humor column for the Huffington Post. Her other essays appear in the New York Times and in national and regional magazines. She has published two novels and eight nonfiction books. She lives in Washington, DC.

  Lenore Gay is a licensed pr
ofessional counselor with a master’s in sociology and in rehabilitation counseling. She has worked in several agencies and psychiatric hospitals, and for ten years she maintained a private practice. Her poems and short stories have appeared in several journals. Her essay “Mistresses of Magic” was published in the anthology In Praise of Our Teachers.

  Marita Golden is the award-winning author of seventeen works of fiction and nonfiction, which include The Wide Circumference of Love and Migrations of the Heart. As a cultural activist, she is cofounder and president emeritus of the Zora Neale Hurston/Richard Wright Foundation.

  Evans D. Hopkins is the author of Life after Life: A Story of Rage and Redemption. He began writing as a member of the Black Panther Party Newspaper, under the editor-in chief, David DuBois. While serving twenty years in Virginia prisons for robbery and related offenses, Hopkins educated himself as a creative and political writer. He became one of the nation’s most widely read incarcerated writers, with articles in the Washington Post, The New Yorker, and numerous other publications, and was paroled in 1997. He lives in Richmond, Virginia, with his wife and is working on a new book and other projects.

  Julie Langsdorf is the recipient of four Individual Artist Awards in fiction from the Maryland State Arts Council. Her debut novel White Elephant was published by Ecco.

  Cleyvis Natera was born in the Dominican Republic and immigrated to Harlem, New York, as a child. She has a bachelor’s degree from Skidmore College and an MFA in fiction from New York University. She currently lives in Montclair, NJ, with her husband and two young children.

  Elizabeth Nunez is the award-winning author of nine novels, including Even in Paradise, Prospero’s Daughter, and Bruised Hibiscus. Her memoir Not for Everyday Use, excerpted here, won the 2015 Hurston/Wright Legacy Award.

  Brendan O’Brien is a creative director at Small Army, one of Boston’s top ad agencies. Before starting a career in advertising, he was an independent filmmaker, producing and directing documentary and narrative work. Brendan graduated from the University of North Carolina Wilmington in 2006 and lives in Boston with his wife, Laken, and their dog, Brewster.

  Colleen O’Brien Everett graduated from Elon University in 2008 with a degree in communications and graduated from Notre Dame of Maryland in 2018 with a master’s degree in Gifted Education. She is currently a teacher for Baltimore City Public Schools and lives in Baltimore with her husband, Matt, daughter, Adeline, and yellow lab, Crosby.

  Greg O’Brien, author of On Pluto: Inside the Mind of Alzheimer’s, is an award-winning journalist, a board member of UsAgainstAlzhiemer’s, and an advisor to the Cure Alzheimer’s Fund of Boston, and has served on the national Alzheimer’s Association Early Onset Advisory Group in Chicago. He is the author of several books, has published eighteen books by other authors, and has contributed to national radio and television media such as NPR, PBS/NOVA, and others. Over the years, O’Brien has worked for major newspapers and publishing groups as a writer and editor and has contributed to Huffington Post, Psychology Today, Boston Herald, Boston Herald American, the Washington Post, Time magazine, Chicago Tribune, Denver Post, Arizona Republic, AP, UPI, USA Today, Providence Journal, Boston Magazine, Reader’s Digest, and Runner’s World, among other publications.

  Joe A. Oppenheimer is an award-winning poet and fiction writer. His writing for adults focuses on injustice, loss, friendship, nature, aging, and the foibles of life. His work has been published in various literary reviews. “Charlemagne” first appeared in the fall 2016 issue of the Corvus Review. He was previously a professor of mathematical social science at the University of Maryland.

  Julie Otsuka is the author of When the Emperor Was Divine and The Buddha in the Attic, which won the PEN/Faulkner Award and was a finalist for the National Book Award. She is the recipient of a Guggenheim Fellowship and an Award in Literature from the American Academy of Arts and Letters. Her work has appeared in Granta, Harper’s, and 100 Years of the Best American Short Stories. She lives in New York City.

  Daniel C. Potts, MD, FAAN, is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. He was selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year. Inspired by his father’s transformation in the throes of dementia from saw miller to watercolor artist through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics.

  Nihal Satyadev is the CEO and co-founder of the Youth Movement Against Alzheimer’s (YMAA). In addition to his work with this nonprofit, Nihal has been an avid researcher of neurodegenerative diseases. He is currently working on assessing a correlation between Alzheimer’s disease and periodontal disease.

  David Shenk is the bestselling author of six books, including The Genius in All of Us, The Forgetting, Data Smog, and The Immortal Game. He is cohost of the public radio podcast The Forgetting and creator of the Living with Alzheimer’s Film Project, and has contributed to National Geographic, the New York Times, the Wall Street Journal, Nature Biotechnology, Harper’s, The New Yorker, the Atlantic, the New Republic, NPR, BBC, and PBS. Shenk lives in Brooklyn, NY, and Southfield, MA.

  Julia Tagliere’s work has appeared or is forthcoming in The Writer, the Bookends Review, Potomac Review, Gargoyle Magazine, Washington Independent Review of Books, SmokeLongQuarterly, and various anthologies. Julia resides in Maryland with her family, where she recently completed her MA in writing at Johns Hopkins University. She serves as an editor with the Baltimore Review and is currently working on her next novel, The Day the Music Didn’t Die.

  Vicki Tapia, after teaching somewhere around ten thousand mother/baby pairs the art of breastfeeding, found her energies redirected to the other end of life after both her parents were diagnosed with dementia. A diary written to help her cope with caregiving morphed into Somebody Stole My Iron: A Family Memoir of Dementia, published by Praeclarus Press. Tapia’s memoir was a finalist in the 2015 High Plains Book Awards. A sometimes blogger for the Huffington Post, she is currently at work on her second book and actively involved in the administration of AlzAuthors.com.

  Sonsyrea Tate is the author of the memoirs Little X: Growing Up in the Nation of Islam and Do Me Twice: My Life After Islam. Sonsyrea has worked for the Washington Post, the Chicago Tribune, the Virginian Pilot, and several community newspapers. She currently works for the US Government Publishing Office.

  Sallie Tisdale is the author of many essays and several books, most recently Advice for Future Corpses.

  Katia D. Ulysse is a fiction writer, born in Haiti. Her short stories, essays, and Pushcart Prize–nominated poetry appear in numerous literary journals and anthologies, including: the Caribbean Writer; Smartish Pace; Phoebe; Meridians: feminism, race, transnationalism; Mozayik, the Butterfly’s Way, and Haiti Noir. She has taught in Baltimore City’s public school system for fourteen years and served as Goucher College’s Spring 2017 Kratz Writer in Residence. She is the author of the critically acclaimed short story collection Drifting. Her latest novel, Mouths Don’t Speak, continues to receive high praise from critics and readers.

  Loretta Woodward Veney is the author of Being My Mom’s Mom and Refreshment for the Caregiver’s Spirit. Loretta is a motivational speaker and trainer who has delivered more than three hundred speeches and presentations on dementia and caregiving. Loretta and her mom have been featured in articles in the Washington Post, the New York Times, AARP, as well as a PBS special featuring Alzheimer’s caregivers.

  George Vradenburg is chairman of UsAgainstAlzheimer’s, which he cofounded in October 2010. He was named by US Health and Human Services Secretary Kathleen Sebelius to serve on the Advisory Council on Research, Care, and Services established by the National Alzheimer’s Project Act and has testified before Congress about the global Alzheimer’s pandemic. He is a member of the World Dementia Council. He and UsAgainstAlzheimer’s co-convene both the Leaders Eng
aged on Alzheimer’s Disease (LEAD) Coalition and the Global CEO Initiative on Alzheimer’s Disease. With his wife Trish (1946–2017), George has long been a dedicated member of Washington’s civic and philanthropic community. George served as chairman of The Phillips Collection for thirteen years and is a member of the Council on Foreign Relations and the Economic Club of Washington. He has served in senior executive and legal positions at CBS, FOX and AOL/Time Warner. George and Trish published Tikkun Magazine for ten years.

  Wren Wright, a former librarian retired from a global telecommunications company, holds a BA in communications-literary journalism from the University of Denver. Her writing has appeared in national and international literary magazines as well as local publications. Her ebook The Grapes of Dementia: My Story of Love, Loss, Surrender, and Gratitude chronicles her grieving process after her husband’s diagnosis of early-onset dementia.

  Ann Marshall Young retired from a career in the law in 2015 and since that time has focused her energies on community activism and service as well as writing. She has previously published articles on legal/ethical issues and her travels with women judges in China, and has now moved into the nonlegal arena, concentrating on personal/historical subjects.

  ACKNOWLEDGMENTS

  I want to thank my editor, Cal Barksdale, for his support and enthusiasm for this project. This is my second book with Skyhorse Publishing, and I have found the experience of working with the Skyhorse family one that continues to be deeply satisfying. This book is a project that was inspired by the commitment of the caregivers of those with Alzheimer’s and dementia, those researching the disease and trying to find a cure, those living with it, those standing in friendship with those impacted by it. I wanted to provide a space where their stories—complex, surprising, troubling, inspiring—could be shared with dignity. The generous response of all the writers in this book has been gratifying. They have shared not only their stories but their networks, their communities, and their ideas for connecting these stories with the widest audience possible. Like nearly all the books I have written or edited, UsAgainst Alzheimer’s: Stories of Family, Love, and Faith came to me as a surprise. Sometimes as a writer, you are “called.” I no longer ask why. The dedicated, visionary team at UsAgainst Alzheimer’s provided invaluable guidance along the journey from idea to book. I thank them for their service and hard work as Alzheimer’s activists and for making this the fine book it turned out to be.