Still Phyllis

Phyllis was a vital, single woman, a photographer and writer, who was enjoying life in the city when she was suddenly stricken by Creutzfeldt-Jakob Disease (CJD), a disease rarer than a lightning strike that spreads, incredibly, via a non-living molecule called a prion. Terrified to realize she couldn’t perform her duties at work, Phyllis very soon couldn’t even find her way to her desk or to her apartment from the corner store. Informed of his sister’s diagnosis with this dementing and always fatal illness, her estranged brother, her only living relative, brought her home (against the advice of her doctors) to care for her with his wife.
The profoundly affecting memoir illuminates how closeness can deepen when words are lost—an inspiring truth to anyone with a friend or family member with dementia.

Donald Friedman is the author of several novels, The Writer’s Brush: Paintings, Drawings, and Sculpture by Writers, and a regular contributor to Interfaces, a French/English scholarly journal devoted to the relationship between text and image. His blogs, essays, short stories, on-camera interviews with famous writer-artists and art gallery can be found at DonaldFriedman.com. He divides his time between Rhinebeck, New York, and Sarasota, Florida.

Donald Friedman
Format: softcover (6 x 9)
Pages: 205
Bibliographic Info: 5 photos, index
Copyright Date: 2024
pISBN: 978-1-4766-9434-4
eISBN: 978-1-4766-5199-6
Imprint: Toplight

Acknowledgments vi
Preface 1
1. Dancing in the Street 5
2. The Breakdown 11
3. The Psychiatric Referral 16
4. CJD 20
5. I Bring Her Home 21
6. The Diagnosis 26
7. Cleaning Her Apartment 31
8. August 20, 1998: Back in the Neighborhood 35
9. Cannibals and Contagion, Love and Support 38
10. Compassion Manifest 42
11. Be Frightened 44
12. A Surprising Joke 46
13. The Days Were Lovely 53
14. Canyon Ranch and a Phyllis Vision 58
15. Crying Because I Needed To 68
16. Conversation with Phyllis 75
17. The Witches Gather 81
18. Taking Notes and Learning Nothing 83
19. How Long Do We Give Them? 88
20. 24/7 with Phyllis 91
21. Going to Florida 93
22. Visitors 100
23. Guilt Again 102
24. Phyllis Excursions 104
25. Indulgences 109
26. Christmas Day 117
27. New Year’s Celebrations 119
28. Montego Bay, January 1999 123
29. Eating Newspaper and Peeing on the Bathtub 126
30. “We’ll have to find out” 130
31. “It’s been so long” 133
32. Carolyn Taking Over 139
33. Snow 146
34. Brazil 154
35. “I’ve had it” 158
36. Back from the Dead 163
37. Phyllis’s Birthday 168
38. Paralysis Overcome; Getting Philosophical 171
39. Two Days in Roseville, California 176
40. July 4th Fireworks 179
41. Heart Strong, Lungs Clear 183
42. The End 184
43. Writing the Eulogy 189
Index 193

• A Book Life Editor’s Pick

• “Incisive, moving, and stripped of sentimentality…scrupulous prose… Scenes of brother and sister still managing to understand each other despite the fraying of Phyllis’s capacity for language have rich power… That commitment to rigorous thinking and writing about life as it’s actually lived powers this first-rate memoir, an act of memory, empathy, and love. … Finely wrought, deeply human memoir of a sister’s neurodegenerative disorder.”—Book Life

• “Donald Friedman brings his considerable literary gift to this memoir of despair, and with that gift fills the pages with the flickering light of the spirit. Seeing through his dying sister’s eyes he discovers levels of perception unknown to him before. He helps his sister navigate a horrible hall of broken mirrors—brain disease—and in doing so he discovers a hidden love—which is usually the deepest love because we never suspect it’s there.”—William Kotzwinkle author of ET the Extraterrestrial and Felonious Monk

• “Donald Friedman’s Still Phyllis is a masterfully told memoir about the imperfect love of siblings and the meaning that can be found in facing terminal illness and death. It’s full of deep thinking about CJD and the ravages of dementia, brilliant descriptions, and a rare gratitude for second chances. The final chapters will leave you in a puddle.”—Benjamin Anastas, author of Too Good To Be True

• “Donald Friedman’s memoir of caretaking his sister through her dementia, shows us that, while personhood may be diminished by illness, the soul of the sufferer remains and is there to connect with. He is eloquent about the guilt, confusion, and stresses caregiving exacts, and the struggle to maintain belief in a caring, just God. For those, like Friedman, who search for consolation outside religion, in philosophy, science, literature—all touched on here—comes the ultimate, welcome discovery that God’s presence is to be found in the world, that it could be seen, ‘in the friends who did show, in the strangers who, unasked, stepped forward with kindnesses, large and small.’ Friedman’s book will provide comfort and support for the many—religious, or not—dealing with the dementia of a friend or loved one.”—Rabbi Zoe B. Zak, Rabbi of Temple Israel of Catskill, co-author of The Cook and the Rabbi

• “After years of estrangement, Donald Friedman brought his sister Phyllis into his home to die. During the next sixteen months, as Phyllis deteriorated from a rare brain disease, her brother and his wife did their best to make every day count. Still Phyllis is a powerful, beautifully told, heart-wrenching story that demands all of us to consider the complex, unbreakable bonds of family and to marvel at the redemptive magic of love.”—Peter Golden, author of Nothing Is Forgotten

• “If love is all there is, this beautiful memoir of a brother’s love for his sister as she dies from an extremely rare, cruelly disintegrating illness under his watch and care is both moving and inspiring. He tenderly tries to understand what her incoherent speech is saying, he does all in his power to make sure her life in this aggressively diminishing illness has many moments of joy. He is her north star as she wordlessly starts to leave her body and mind. Perhaps the most tender is when they drive silently together, her looking out the window, only able to say, ‘It’s so beautiful.’ This is a book of the tremendous dignity in our responsibility one to the other and the tremendous poetry in leaving no one behind.”—Gay Walley, author of The Waw and the Venus As She Ages collection

• “Still Phyllis is an honest portrayal of what a family experiences in caring for a loved one with CJD or other neurodegenerative illness. It balances the heartbreaking and grinding reality of caring for a person while the disease rapidly steals everything from them, with the beautiful moments when we are able to help give them their best day, when we can help them feel like themselves by surrounding them with the people, places, foods, and experiences that they have loved so well.”—Debbie Yobs, president/executive director, CJD Foundation

•“Donald Friedman’s narrative about his sister’s final months of fighting a rare degenerative brain disorder, is an inspiring example of how to care for a loved one in cognitive decline with respect and sensitivity—honoring their freedom, dignity and sense of self.”—Carrie Seidman, Sarasota Herald-Tribune opinion columnist and founder of the FACEing Mental Illness project and podcast

• “This is a brutal and beautiful memoir; Donald Friedman’s story is of sibling love and grief enriched by sublime flights into inquiry and understanding—always tethered to a survivor’s guilt over a forever unfixable past. Amid this sad odyssey of deterioration there are rafts of joy and beauty borne aloft by Friedman’s finely calibrated prose, which can be frank and allusive, crude and erudite, unsparing and sensitive in the span of a single paragraph.”—Roland Kelts, author of Japanamerica

• “Still Phyllis unsparingly recounts the slow dissolution of a loved one and its cascading effects on her extended family. It would be devastating if it weren’t so tender. It is devastating, but Donald Friedman tells his sister’s story with such empathy, insight, and—yes—humor, that the book soars.”—Peter Trachtenberg, author of 7 Tattoos, The Book of Calamities, and The Last Artists in New York