- Paperback: 168 pages
- Publisher: Routledge; 1 edition (November 27, 1996)
- Language: English
- ISBN-10: 1574440713
- ISBN-13: 978-1574440713
- Product Dimensions: 6.2 x 0.4 x 9.2 inches
- Shipping Weight: 6.4 ounces (View shipping rates and policies)
- Average Customer Review: 4 customer reviews
- Amazon Best Sellers Rank: #2,406,122 in Books (See Top 100 in Books)
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How Will They Know If I'm Dead?: Transcending Disability and Terminal Illness 1st Edition
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"Robert Horn has done more real living than most of us ever do." -From the Preface by C. Everett Koop, M.D., Sc.D., Former U.S. Surgeon General [Horn] approaches it all with curiosity and humor." -ALS Newsletter "This book . . . is both realistic about living with ALS and inspiring in the best sense. Horn shows how he does it and makes it look not exactly easy, but well worth the effort." -Quest "How Bob and his family coped-and continue to cope-with disability and terminal illness is an amazing story that readers will find inspiring, heartwarming, and humorous and a celebration of the triumph of life." The Phi Gamma Delta "Tethered to life by a feeding tube and a ventilator, Bob Horn rafts us through the narrows and shoals and open spaces of being." -Richard A. Smith, M.D., Center of Neurological Study, San Diego, CA ..."a book you won't put down and won't put out of your thoughts." -William A. Anthony, Center of Psychiatric Rehabilitation, Boston University ..."a picturesque tale of the human spirit - honest, wise, compelling, triumphant. And it's pretty funny too." Scott Harris, Los Angeles Times "Faced with the choice between death and a life all too many would say was not worth living, Robert chose life, and in doing so he has made so many of us realize how much life is worth living." -C. Everett Koop, Former U.S. Surgeon General
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Even this affluent family couldn't afford to pay for round-the-clock nursing care, so they cobbled together health care aides, family and volunteers. If Horn had just given up and gone into a nursing home, his expenses would have been covered. Wanting to live in the world, with his wife, friends, colleagues and grown children, he paid a huge financial price, and his wife had to work the equivalent of two full-time jobs, one at her day job and the other job at night, as her husband's caretaker.
Is it really that hard for society to put a program together that will keep adults at home, if that's where they want to stay, after the onset of a life-threatening illness or disability? Much to his credit, Horn doesn't spend much time dwelling on the negative, instead revealing a strange zest for life, a willingness to go on living, when most of us would have given up.
A quick web search revealed that Horn died in 2002, living an amazing 14 years with a disease that usually results in death within 5 years. After reading his book, he comes across as the kind of man you wish you'd had a chance to know in life. Horn writes about a life lived with few regrets, and maybe that's the best we can all hope for, at the end of our lives.
In the opening pages, the author describes himself as a man who was, until his mid-forties, 'a very normal person and yet, at the same time, a somewhat abnormal one. I was normal in the sense that that there was nothing particularly unusual about me, no involvement in anything, positive or negative, unique or spectacular.' I am certain that those who knew and loved Mr. Horn would consider him to be a man who lived an unusual, spectacular and quite memorable life.