NEW PRAISE FOR Looking Back
A HARD-TO-READ BOOK WORTH READING
I was going to save this column for early September, but decided I didn’t want to wait! I have just read a hard-to-read book that is very worth reading. Oh, the words are not hard to read. They’re straight forward and clear. But the story is a tough one to get through. And worth it! The book is called “Looking Back from the Gate: A Story of Love, Art, and Dementia.” The author is Phyllis Chinlund. You likely don’t know her personally. I don’t. But I plan to meet her on September 13. Perhaps you will too. Phyllis has a cousin in Sandpoint, Kathe Murphy. She will be visiting Kathe in September, and we have invited her to speak about her book at the September 13 Geezer Forum. For anyone who has had, or currently has, a loved one with dementia, Phyllis tells our story by telling her own. Her husband, Ray, was a creative, loving, frustrating man — both before his dementia diagnosis and during those fearful, loving years when Phyllis cared for him. Ray was a globe-trotting professional photographer in his younger years. His photography embraced him through his illness. They nourished each other during their 35+ years of marriage with the professional creativity they both possessed, with unashamed passion for each other, and with some welcome honesty about their relationship. Those qualities served them well in Ray’s last years of declining cognition. In my own professional life, I have heard some of their story as I listened to so many spouses and adult children struggle with the emotional burdens they tried to shift on their backs. Some of the struggles look familiar to me. But Phyllis and Ray faced them in their own unique ways! At the top of the book’s cover, a daughter of an Alzheimer’s patient is quoted: “I am awash with emotion for the ‘characters’ in the book and the story that is there. It must be read by many people”. I must agree, though I know that reading it will bring tears of compassionate recognition to many.
By Paul Graves, Bonner Daily Bee, July 6, 2016
I was very moved by your story, and found your openness, as well as your empathy for Ray and your ability to find pockets of meaning and joy throughout his illness, remarkable. Your words and thoughts can provide much comfort to anyone who is living with a loved one who has dementia. especially your descriptions of at times struggling with dark emotions toward the stranger that Ray had become. Your book will occupy a permanent place on our bookshelf.
Barbara McDonald, Program Development Advisor, Wilson Language Training
Following New York City launch party
What a terrific book. I love the varying voices, the shifts in view, the thoughts, and the thoughts about the thoughts. It’s a book for sure, but it also feels cut and directed like a film. Everyone in similar circumstances, should read it.
Allan Kronzek, author, educator, and magician
I have now read “Looking Back from the Gate” twice and am haunted by your apparently boundless capacity to love and for your great courage as a traveler into the unknown. You are a wonderful writer and a very special person
Barbara Abrash, Retired Associate Director for the Center for Media, Culture and History at New York University
I ran through the book again, staggered by its originality of style and many other things—like how it keeps grabbing me in the same or some new way. You’re a remarkably creative writer and thinker—
Richard Lukin, Retired film producer
From fellow authors:
I’ve never read anything so convincing about what it must be like to be losing and lost with Alzheimer’s. I’ve seen films — we all have — where there’s some attempt at humor and pathos — but this is so intimate, so inside you and Ray, like being inside two people at the same time. And those dialogues you give us — astounding! … the voice that takes something that could be trite, or maudlin, and turns it into an experience that we, the readers, live through with you because we want to. We want to be with these people named Phyllis and Ray.
I know that at some level you want the book to be helpful — and I’m sure it will be. But there really is something larger than that — It’s rock-solid as a work. It stands there, obdurate, unsentimental, itself.
Janet Sternburg, author of Phantom Limb and White Matter
I started your book a few nights ago and was drawn in immediately. I just finished it. I must tell you that I felt close to Ray and to you right from the start, as you have been so honest and direct in your descriptions. Of course, I related to Ray because of the beautiful, pertinent photography you included, and because I have been deeply involved lately in developing a visual and written inventory of my thousands of drawings and paintings. I’m also reminded of an elderly friend with thousands of slides who is now suffering from dementia and other problems in nearby assisted living. Ray’s letters are wonderfully descriptive, as are your journal entries, all of which paint a mutually-admiring and loving relationship. Your insights into Alzheimer’s ring true and will offer solace to all caregivers who read them.
I’m so glad you have written and produced this lovely and loving tribute to Ray, and I hope it has been a great and satisfying catharsis for you. Thank you so much for sharing such a warm, personal and insightful story with the rest of us.
Artist and author of “Whoop and Drive ‘er!”: Growing up in Aroostook County, Maine
From people who attended Book Launch Party, 4/16/16
What an accomplishment. I particularly enjoyed getting to know you through your journal entries, despite the sadness underlying it all. I was often moved to tears, but I also laughed out loud a few times, just as we did during your launch party last Saturday! Thank you for your bravery and for sharing your story, and Ray’s.
My dear friend, Phyllis Chinlund, has written this wonderful book and I’ve followed it through to its exciting birth and launch on April 16, 2016. Phyllis has woven many strands in her development of this memoir giving it a multi-dimensional feeling which propels the reader onward through the story. And what a story it is! So beautiful, heart rending and honest every step of the way! We are propelled through fascinating diary entries, letters between Ray and Phyllis, caregivers’ comments so insightful, often humorous, many dialogues with a similarly great interest and humor, and all this is interspersed with Ray’s creations, his amazing and magical photos which tell a story in themselves. Finally, there is an almost heart breaking irony at the end when Ray does indeed look back from the gate, giving the story its ultimate closure. So thank you dear friend, your hard work has given us a deeply true story of love and art as confronted by unrelenting Alzheimer’s disease.
Congratulations on a successful launching of your book! I am so glad that I came to the party; it was wonderful. I so enjoyed the segments of the book you read yesterday that I read about half of the book last night. It is a beautifully told, poignant story and thoroughly engrossing. I am really happy to have a way to learn more about Ray, his work, and your relationship.
I started the book last night and don’t want to put it down. But I’m also trying to savor it and not rush through it. It’s such a moving read and so honest. Congratulations again on all your work to write it and publish it – most impressive! Alison Eckert
I had to write you a note and let you know how much I appreciated being a part of your book launch. What a powerful and moving experience to hear you read passages from your book! I already knew you were an amazing woman. What a gift to be able to learn more of your story, and to learn of your talent for writing!
I began devouring your book on the ride home. Phyllis, it is so captivating and well written. And the photographs are stunning. I would love the book if I didn’t know you, and it makes it even more special knowing the people involved. It is so interesting to be able to learn more about Ray before the dementia. What a beautiful tribute to both of you and your love for each other.
Ann Gayer, LCSW
Congratulations on creating something so wonderful. I think you are the most authentic person I’ve ever known. I’m just blown away by your fearless honesty. Your courage was/is truly amazing. I am so happy for you that you have accomplished this goal, and I hope the book gets all the success it deserves.
From people who had read and endorsed Looking Back before publication: What an exciting book arrived in the mail! I was delighted to see the finished product, how beautifully it came out, the clarity and quality of the photos, the print — the way the book feels to hold. You must be thrilled. Of course I think of Ray too… his stunning photographs such a tribute to his gifts and a wonderful part of the book. Congratulations! Knowing what I went through to bring my book to completion, I know what a huge accomplishment it is — a gift from you both and all you went through.
Author of Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s
Seeing the book in its published form is both exciting and impressive. Congratulations on the fruition of your heartfelt, insightful endeavor. I know how much of you was put into writing this. Many people will relate, laugh, cry and be supported by your story. I know I will recommend it and share it with others.
Anne Romney Educator and group facilitator
Advance Praise for Looking Back Through the Gate
Looking Back from the Gate is an evocative, in-depth account of accompanying a spouse through the progressive stages of a dementing illness. By juxtaposing the present with her photographer husband’s past correspondence and artistic ventures, the author poignantly captures the essence of the man she loves and of their complicated marriage. Looking Back will provide others with a challenge to creatively survive the joys and sorrows that accompany devastating illness. Beautifully written, Looking Back is highly recommended!
—William Jeanblanc, MD, Director, Geriatric Psychiatry, Maine Medical Center
I couldn’t stop reading! I love the present tense. It turns what could be (and is) such a sad story into kind of a suspense thriller—we have the feeling of walking along with the narrator through her good days, bad days, changes, and not knowing any more than she does at the exact moment of her knowing. It’s beautifully, sparely written … a bit like Oliver Sacks. Of interest to anyone who’s curious about how our brains work and don’t work. And it’s a love story. Who wouldn’t want to read it?
—Nancy Coleman, PhD, Psychotherapist
Phyllis Chinlund has written a compelling memoir about how she and her husband Ray navigated through perilous times during his decline into Alzheimer’s. Her vivid descriptions, including the heartbreaks and love they shared, invite the reader into their world. The book is honest, passionate, and hopeful, because Phyllis responds to her husband’s diminishment with unusual sensitivity and creativity.
Generously illustrated with Ray’s stunning photographs, Looking Back From the Gate is also a beautiful tribute to his uniqueness, intellect, and creativity. Everyone will be inspired by how these two remarkable people met one of life’s greatest challenges.
—Olivia Hoblitzelle, Author, “10,000 Joys & Ten Thousand Sorrow’s: A Couple’s Journey Through Alzheimer’s”
I was moved and impressed by this story of a loving marriage into which a third party intrudes: Alzheimer’s disease. As a geriatric social worker, Phyllis knows emotions and the emotional impact of Alzheimer’s on those diagnosed and those who love them. But knowing the field as a professional does not ease the personal anguish. As the disease makes intellectual conversation unavailable, Phyllis shares powerful moments, new ways of connecting, and heartbreaking disconnects. She uses her creative and social work skills to understand what Ray is trying to communicate, ultimately understanding the deeper connection they continue to share. “We end up talking about love.”
—Lucia McBee, LCSW, Author of Mindfulness-Based Elder Care, Teacher and workshop facilitator of Mindfulness for Everyone
Chinlund has a real gift for writing, for bringing the reader close to her most intimate thoughts. This book spoke to me on two levels. First, it models how to respond creatively to confusing or anger-producing behavior by a loved one suffering dementia. Second, the book tells the story of a relationship in a way that would interest any reader. I found myself engrossed from start to finish, even though I have no connection to the illness. I like the book’s format—the use of diary entries, notes to caregivers, and e-mails, interspersed with Ray’s essays and photos. Ray Witlin’s photography eloquently depicts the lives of everyday people in the developing world, neither romanticizing nor patronizing them. And his later photos are a hopeful testament to the enduring power of the creative drive.
—Fred Andrle, author of What Counts and Love Life, Retired public radio host
I was transfixed. I love the Theater of the Absurd/profound conversations. Like … Dutiful Daughter, I imagine this book would be so helpful to people.
—Deborah Hoffman, Filmmaker, Academy Award-nominated documentary, Complaints of a Dutiful Daughter, about her mother’s Alzheimer’s disease
The stories and the honesty of Looking Back from the Gate will have a universal connection to anyone coping with the conflicting emotions of caring for someone with a dementing illness. It’s all expressed so well—the love and frustration, the craziness and fear, the humor and sadness, along with the caregiver’s need for self care. I am sure that others will find validation, strength, and compassion in the book.
In a workshop setting, vignettes from the book would give people permission to name their own struggles and brainstorm ways to make the best of a hard situation. Thank you for sharing such a deeply personal story.
—Anne Romney, Educator and group facilitator
Reading Looking Back from the Gate is as though Phyllis Chinlund has taken you gently by the hand as she walks you through the stages of coming to terms with her husband’s dementia, from reluctant acceptance, to shaky adjustments, to efforts to sustain his dignity as his impressive abilities as a renowned photojournalist erode. Gifted with compassion and insight, Chinlund unlocks the gate of dementia to draw the reader beyond the fatigue and indignities she chronicles, into the vulnerable and generous heart that sustained the great love she and Ray shared. Truly inspiring.
—Catherine Gentile, author of The Quiet Roar of a Hummingbird; Editor, Together with Alzheimer’s Ezine
This is really a love story and will touch a lot people, whether they have Alzheimer’s in the family or not. I had a good cry at the end.
—Kay McArthur, Hospice volunteer coordinator
A remarkable book. I read avidly, wanting to see what happens next. The language is evocative and spacious. Forthright, honest … It’s that personal quality that really makes the book come alive. Not a false note in it, leading to a strong emotional reaction by this reader. A great accomplishment.
—Nancy Zugehoer, family member of Alzheimer’s patient
As I turned the final pages, tears were streaming down my face. There is a very beautiful arc to the story. The thread throughout from the past is lovely. As the disease progresses, I was caught up in Ray’s obsessions with coins and magazine covers. There is no sugar-coating the struggles of caregiving—from the rummaging, to the wandering, the incontinence, and finally, the aggression.
I also love the conversations recorded in the later years. I had done some of that with my mom, but now I wish I had preserved more of what came out of her struggling mind. I find it fascinating (and deeply disturbing at the same time, of course) to see how the disease twists what the person is trying to convey. I am awash with emotion for the “characters” in this book and the story that is there. It must be read by many people.
—Kate Seavey, daughter of Alzheimer’s patient