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155 of 157 people found the following review helpful:
5.0 out of 5 stars
Welcome to your future, January 14, 2008
I won't lie to you. This is a hard book to read. Oh, it's not because of Richard Cohen's writing. His style is as graceful, conversational, and flowing as readers of his earlier Blindsided came to expect. And it's not because the subject matter of the book--coping with chronic illness--isn't both intrinsically interesting and relevant to our own lives. In a day when medical science keeps us alive longer and longer, many of us who are now healthy are likely to be looking at chronic illness down the road. 90 million Americans already endure chronic illness.
And that's what makes this book a difficult read. It's too relevant. As Cohen says, "welcome to your future."
Cohen, himself one of the chronically ill (MS and cancer survivor), profiles five people who cope with chronic illnesses. Two are kids, three are middle aged adults. The illnesses are ALS, non-Hodgkin's lymphoma, MS, Crohn's Disease, and bi-polar disease. Through extensive interviews with these people, as well as his own personal experience, Cohen explores the entirely new world we're thrown into when chronic illness strikes us. It's a world none of us are prepared for, and we have to grope our way toward answers to the new set of questions that confront us. How to deal with the ensuing anger? the panic? the loss of control? How to realistically acknowledge one's condition without allowing it to absorb one's whole being? How to deny in a fruitful way? How to cope with the healthy world, whose members are indifferent, terrified by, or clueless when it comes to chronic illness?
Doubtlessly each reader will be especially moved, because of his or her personal circumstances, by one of the five chronically ill folks profiled by Cohen. Denise, the ALS sufferer, particularly speaks to me. A dear friend of mine died of ALS. So did my wife's father. In reading Denise's sometimes panicky, always smoldering, efforts to cope with a disease that inevitably destroys the body while leaving the mind intact, the brutality of my friend's ordeal came rushing back to me: his conviction that ALS had ruined his life without teaching him any great life lessons, his feeling of being cheated, his almost unspeakable terror at the thought of "lockdown" (the state in which the ALS has progressed to total paralysis and the patient's consciousness is "locked" into an immobile body), his despair at the steady loss of self-reliance.
Still, there is hope in this book, although it's a hope that's sober and realistic. The people profiled here know that their diseases are incurable. Three and probably four of them will die of their chronic disease. Yet each of them struggles to live while they can. They struggle for self-control, to be brave for others, to make some kind of future for themselves, and to learn what can be learned from their growing dependence on others, their heightened sense of the fragility of life, their increased appreciation for the little things that they once took for granted.
But Cohen never sentimentalizes their (or his) struggle. This is the real deal, not Hollywood stuff. Resilience goes lax, patience is frayed, tortured bodies and splintered emotions get worn out. As Cohen says (and in doing so speaks for all the folks he profiles), "I awaken each day and hate being a sick person." And yet, like Sisyphus, he and millions of other chronically ill people nonetheless go on. In the final analysis, it's the going on, the affirmation of life despite everything, that infuses hope--although not victory--into this story.
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27 of 28 people found the following review helpful:
5.0 out of 5 stars
Excellent, January 20, 2008
An eye-opening, compassionate and very honest look at the way many people with chronic illness choose to approach life in order to make it a life worth living. Not for childish, immature or me-centered people. Its message changed me, for the better. Thank you, Mr. Cohen!
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18 of 22 people found the following review helpful:
2.0 out of 5 stars
The Whole Is Less Than The Sum of Its Parts, February 14, 2008
I wish I were a bigger fan of this book. I admire what Dr. Cohen did in giving a voice to those with chronic illnesses, and think he parlayed his own pain and suffering (from MS and cancer) into something healing and productive. I also applaud the courage of the individuals profiled in the book, and the tremendous dignity they brought to their respective disorders. Good intentions on the author's part, and the bravery of the book's subjects, however, weren't enough to distract me from the issues I had with SATBP.
For one, Cohen made a few strange choices in his selection of patients to convey his message, considering the extensive nationwide search he'd done to find them. An example is ALS sufferer Denise: Cohen portrayed her as angry with her condition (who wouldn't be?) and determined to live her life in as independent a fashion as possible, to the point where she arguably would prefer death over dependence on others. However, glimpses into Denise's past show her to already have been a bitter person before the disease, divorced and angry, and already alienated from her family (to whom she seems to prefer her cats). The rage and helplessness of an ALS sufferer would have been more acutely conveyed had the individual been happier prior to affliction.
Another curious choice was Larry, who had bipolar disorder. A huge theme of Larry's section of the book, underscored by both Cohen's musings and Larry's own quotes, was the public's misconception of mental illness, and the unfair stigmatization of disorders of the mind. Particularly offensive to the men was the act of committing someone against his will to treatment for a mental condition- something with no parallel in non-mental disorders. However, Larry was a dangerous man, one who took personal instructions from God, appointed himself a mercenary to go to Colombia to fight the drug war, routinely drove under the influence of drugs and alcohol, rammed Coke machines with his head (at least partly due to his rage over the color red), embezzled money from his company, and drove his truck into his house because he thought it possessed. I for one couldn't feel too sorry for Larry's commitment after reading of his family and wife's inability to get him into voluntary treatment, and recognizing the threat he posed to others. The unfairness of commitment would have resonated more from someone who didn't pose such a threat.
Cohen had a way of describing the human and/or diseased condition only through clichés. I also felt he betrayed some of the trust he'd gained by accessing these people's private lives. He was skeptical of answers given to questions about their attitudes towards their diseases, most particularly with the religious (I thought Cohen in fact was nearly condescending in his view of religion, most particularly with cancer sufferer Buzz). He didn't seem to honor requests not to write about patients' family members, and had a way of pitting parties against one another (e.g., Sarah and Denise against their parents). Lastly, SATBP is mildly disdainful of the medical profession; some of it is deserved, but the book neglects those doctors (except Cohen) who truly enter the field to better mankind.
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