Never Say Invisible: A Memoir of Living and Being Seen with ALS
Original price was: $14.95.$13.03Current price is: $13.03.
“With honesty, poignancy, passion, and humor, this book will open your eyes and possibly your heart.”—Sue Monk Kidd, New York Times bestselling author
Jeremy Schreiber was on top of the world—athletic, newly married, successful. And then something went terribly wrong. In this moving memoir, he shares his journey after he received a terrifying diagnosis: ALS.
As the devastating disease robbed him of movement and speech, he was abandoned by his wife and betrayed by a society that shuns people with disabilities. But it’s not all doom and gloom. He found love, support, and a powerful purpose.
While fighting for his independence and then for his life, Jeremy gave his all to the ALS and disability communities. Never Say Invisible is his legacy gift. Smart, clever, and humorous, his story is a testament to what can be learned and achieved despite a terminal illness.
Jeremy died on October 29, 2021, before he could finish this book. Sandra Jonas Publishing is proud to collaborate with his parents, Fred and Ronnye Schreiber, to carry on his work.
A portion of the book proceeds will be donated to the ALS Association Greater New York Chapter and the ALS Therapy Development Institute.
“The honesty, anger, and unflinching detail of Schreiber’s account bestow a power most inspirational stories lack. I will not forget this book.”—Mary Roach, New York Times bestselling author
Publisher : Sandra Jonas Publishing House
Publication date : June 19, 2022
Language : English
Print length : 192 pages
ISBN-10 : 195486101X
ISBN-13 : 978-1954861015
Item Weight : 8.8 ounces
Dimensions : 5.5 x 0.48 x 8.5 inches
Best Sellers Rank: #1,068,210 in Books (See Top 100 in Books) #439 in Biographies of People with Disabilities (Books) #450 in Social Activist Biographies #25,666 in Memoirs (Books)
Customer Reviews: 4.5 4.5 out of 5 stars 270 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });
6 reviews for Never Say Invisible: A Memoir of Living and Being Seen with ALS
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Original price was: $14.95.$13.03Current price is: $13.03.
Sue’s Reviews –
A profoundly moving account of the author’s courageous battle with ALS. Five extraordinary stars!
This profoundly moving account of the author’s indomitable courage while afflicted with ALS is one of the best books I’ve read in years. I literally could not put this book down, because this true story reads like a superlative novel: it’s compelling, powerful, informative, illuminating, and extraordinary! The author even infuses his narrative with lots of humor–something I wasn’t expecting in a book about ALS–and this delightful humor ameliorates the story’s inherent sadness.Jeremy Schreiber first developed symptoms of ALS–an always fatal neurodegenerative disease–in May of 2016, when he was thirty-six years old. After months of consulting several specialists and enduring various tests and therapies, he was finally diagnosed with ALS at the Mayo Clinic in Rochester in January of 2018. The diagnosis was “a death sentence.” ALS has no known cause and no cure. The mean survival time is two to five years. The author died in October of 2021, less than four years after his diagnosis.In the prime of life at thirty-six, Jeremy Schreiber had a new wife and a successful career. He also enjoyed the physical challenges of competitive sailing and marathon running. ALS turned his world upside down. His wife divorced him. He moved in with his parents, increasingly relying on them and a series of home health aides as his physical condition deteriorated. It sounds grim and it was, because the author does not spare the details of this incapacitating disease. But this is not a depressing story, because he also stresses the many positives in his life: the love and devotion of his parents and his partner, Melissa; help from his friends and coworkers, some of whom raised funds to purchase a van and other necessary equipment; and the support he received from MDI–Mentor Discover Inspire–a men’s group he joined.Chapter 17 is entitled, “Never Give Up.” Despite his physical limitations, Jeremy Schreiber never gave up. He participated in MDI meetings. In 2019, as a member of the ALS Association, he met with senators and congressmen in Washington, DC, to advocate for policy initiatives affecting people with ALS. He testified before the New Jersey State Senate Budget Commission to help secure funding for the ALS Association budget for 2020-2021. The request for a million dollars was approved. Not least among his accomplishments, Jeremy wrote this book by “typing” with his eyes, one slow letter at at time!The author accomplished much in the few short years he lived with ALS, in spite of the many physical, emotional, and social barriers faced by people with disabilities–barriers that often make them invisible to everyone else. For example, have you ever ignored someone in a wheelchair, too embarrassed to acknowledge that person? I have, and I’m ashamed to admit it. Did you know that ADA compliance is a farce? According to the author, “ADA compliance doesn’t actually mean that something is usable, as a practical matter, by someone who is disabled.” He provides a number of examples.Sadly, disabled people are “kicked to the curb by society.” It’s a shameful truth. As the author states, “This book shines a spotlight on how our society treats those of us with disabilities by categorically ignoring, overlooking, and otherwise making us invisible. ALS was simply my VIP backstage pass into this experience.”This powerful, beautifully written book is essential reading for everyone, because each of us will likely become disabled–either mentally or physically–at some point in our lives. Do we want to become invisible as well? I hope not. This extraordinary book easily earns five stars and MY HIGHEST RECOMMENDATION!
dpen –
Jeremy left a gift I did not know I needed
When I was asked to review this book, I had no idea the emotions I would experience. I at first thought that as an aspiring author myself I would look at the narrative with a critical eye of a fellow writer. Very quickly, I realized that I was entering the world of someone who was dealing with the very same emotional upheavals that one of our closest friends and his family are dealing with as he lives out his young life as a quadriplegic. I could not stop thinking of our dear loved one as I read the words of another young man trapped in a body that was betraying him. But, like our dear young friend, Jeremy Schreiber used his most powerful human component, his mind, to fight back.It was this mind that created the words transporting me into a wheelchair with Jeremy – trying to navigate hallways, crowded rooms, elevators, – and life. He exposed me to the subtle body language that we “healthy” people use when dealing with someone in a wheelchair – including exiting their world by simply standing up! There was great insight I gained from each page and word he painstakingly shared with me.Jeremy Schreiber left me a gift that I had no idea I needed, but I did. You could find it so as well.
Murphy –
just what I needed
I was diagnosed 4 weeks ago today. More questions than you can imagine since I can’t get into an ALS clinic until January. This book has given me a glimpse of what’s to come from someone who’s lived it. Thank you!
Michele –
Moving Autobiography of a Man Stricken with ALS
I enjoyed Jeremy’s autobiography and found it moving and interesting. ALS is a truly horrific disease – absolutely catastrophic. Jeremy did a good job of communicating the progressive (and sickeningly rapid) devastation of this disease. In his case it was fast; from diagnosis to his death was just 3 years. Occasionally, I was moved to silent tears. But the book didn’t affect me nearly as strongly as I had expected it would (due to the nature of the disease itself; as well as the glowing customer reviews I’d read). I do recommend this book: however, if I am being honest I need to also state that I prefer to give 3 1/2 starts rather than 4 (not an option); and that there were two things about the book that didn’t work for me. Firstly, I felt that at times (actually a LOT of the time) Jeremy was trying too hard to be funny. Totally get it if his intent was to bring some levity into what was a totally horrible situation (and life). But still, to me it became almost annoying (and certainly off-putting) that every few pages there just had to be a strong attempt at getting a major laugh. Sometimes it worked; most of the time it didn’t (and YES, this is just my opinion, folks!). For me, most of these jokes/anecdotes/amusing takes grew tiresome fast and showed the author’s real EFFORT to be funny. Secondly: the non-linear arrangement of the book didn’t work for me either. His story was kind of “all over the place”. Here he’s writing about when he was first diagnosed; next page he’s telling a totally unrelated story; 3 pages later he’s writing about the present time; next, he’s talking about when he was a pharmaceutical salesman. A lot of back-and-forth that way. I just really prefer a “beginning/middle/end” narrative – in that order. And I do feel that this type of story works far better that way. If you are interested in a true story about ALS and really remarkable person stricken with it, I strongly recommend “Tales from the Bed” by Jenifer Estess (her wonderful autobiography), and “Three Sisters” (the terrific HBO documentary on her, her battle with ALS, and her two devoted sisters); and the I also very strongly recommend following Steve Gleason (former safety for the New Orleans Saints) and watching his documentary on his ALS battle: “Gleason”. Steve has been battling ALS for 12 years now. Jenifer’s book and the HBO documentary moved me to tears many, many times. Steve is just an incredible person. These two stories (people) have changed me. Jeremy was special and remarkable very strong too; but his book wasn’t outstanding. My opinion.
Teresa Gomez –
very painful last few years
Author was in a lot of pain, very sad book. This book is about the tough time he had dealing with ALS. The suffering and tragedy of his life. This man did not get to live a life as he should have. This disease took over his life.
Zoe –
I found there was a lot of repetition. Was looking for more personal feelings & challenges. It’s more to bring awareness to ALS. So it was fine.