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.
on 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!
on 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.
on March 29, 2008
Book: Strong at the Broken Places: Voices of Illness, a Chorus of Hope by Richard M. Cohen
About: Cohen gets the stories of five people with chronic illnesses: Denise with ALS, Buzz with cancer, Ben with muscular dystrophy, Sarah with Crohn's disease and Larry with bipolar disorder.
Pros: The 5 people's stories are varied and moving.
Cons: Cohen does not let his subjects just tell their stories, which would have lead to a much better book as the five people profiled are very interesting, instead Cohen just seems to get in their way. A choice quote: "I'd rather hear this kid chew than listen to him talk about dying." While interviewing, He seems to try to get his subjects to say what he wants to hear and inserts far too much of his own struggle with MS and cancer as many statements that with "When I..." instead of focusing on the person he's supposed to be profiling. His analysis of the five adds very little and includes such groundbreaking lines as "Cancer is no fun. Neither are diseases of the bowel."
on February 20, 2008
This book which is written by Richard Cohen, a man diagnosed with MS several years ago delves into the lives of other chronic disease human beings and how they are emotionally dealing with life, specifically theirs. I have been diagnosed with several chronic diseases and through letting Mr. Cohen through his first book into my life I now am able to realize how lucky we all can be. I am in the process of reading book number 2 and the irony of it is that a relative of mine has been diagnosed as bipolar and when I finish this book I am sure the most important part of the disease the humaness I will be able to help him with. Getting angry does nothing, Laughing and Smiling causes people to respond to you in kind. Support groups become a life line and people your potential cure. Thank you Richard and your family for sharing you journey with a world full of chronic disease recipients.
I really wanted to like this book, but the reality is that I did not like it very much. I was so relieved when I finally finished it, and this was not due to the interesting subject matter. It was mainly because of the writing style of the author, Richard Cohen.
First, the five people selected to represent illness were fairly well chosen. After the first three, I realized that each seemed to illustrate a different level of acceptance or a different way of handling disease. Denise represented independence, Buzz faith, and Ben acceptance. Checking the contents verified this - sure enough, Denise was "Fighting for Control," Buzz was "Keeping the Faith," and Ben "Facing Down Demons." He moves onto Sarah "Seeking Normalcy," and Larry "Surviving Stigma." This is not an out and out criticism of the composition, as I might have composed it similarly. However, I wish that he had used shorter bios of more people, showing a wider range of how people deal with illness.
Secondly, I thought I'd go crazy reading the endless, mundane quotes. The deeper into the book, the more the author chose to use more quotes instead of paraphrasing. Often unimportant, normal facts, that should have been summed up in a sentence or two, would take a page. It felt like lazy writing.
This book had the potential to be great, but fell short. I wanted to like it, but just couldn't. Reading about disability or illness is tough for the reader, and an author has to handle it just right to make it palatable. Cohen didn't quite have the right ingredients.
Kudos to those featured in the book for their strength and courage, and to all others who are trying to live with debilitating illness.
Richard Cohen's "Strong at the Broken Places: Five Voices of Illness, a Chorus of Hope" shows how five chronically ill people cope with their pain and an uncertain future. The author states that more than eighty percent of Americans over sixty-five suffer from at least one chronic illness; fifty percent live with two. Ninety million Americans battle chronic illnesses every day. In this book, the statistics become real: Denise Glass suffers from amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease; Buzz Bay has non-Hodgkin's lymphoma, a form of cancer that attacks the body's immune defense system; Ben Cumbo is a college student who was diagnosed with Duchenne muscular dystrophy when he was three; Sarah Glass is doing her best to function as normally as possible with Crohn's disease, a disorder of the gastrointestinal system; Larry Fricks is manic-depressive.
Cohen wrote this book because "too often the sick are seen and not heard." In "Blindsided," Cohen described his own anger and frustration when he was stricken with multiple sclerosis and colon cancer. Here, he expands his perspective to provide insight into how other chronic conditions "attack body and spirit, assaulting the quality of our lives." Too often, "we become our illnesses." In addition to the suffering that they endure every day, the chronically ill must sometimes deal with condescending and aloof medical practitioners and the ignorance and indifference of the rest of us. Cohen and his five subjects traveled together to the Harvard Club in Boston to address an audience of medical students. Their goal was to encourage future doctors to relate to their patients with more understanding and compassion.
Many people who read "Strong at the Broken Places" will become tearful contemplating the cruel fate that awaits so many. Denise's story is heart-wrenching. Richard met her when she was forty-seven; she is a pretty, petite blonde with an uncertain gate whose speech is sometimes slurred. Although she has always been determined and self-reliant, "she [lives] on a tightrope," avoiding foods that might cause her to choke and planning her outings carefully to avoid obstacles as much as possible. She needs to sleep in a particular position to ease swallowing, and dressing by herself is far from easy. She is used to people thinking that she is mentally challenged or drunk when they hear her indistinct speech. She is used to falling by now. "Everything we all take for granted has been taken away." Still, she has decided to face her illness according to this philosophy: "Every day, live your life and live your dreams."
Denise's story and the four others that Cohen relates clearly demonstrate that no two people react in the exact same way to chronic illness. Buzz Bay is a man of faith. He focuses on his family and his church, asserting that he is not afraid to die and welcomes a chance to reside in heaven with his loved ones. Ben's story is particularly poignant because he is so young. At an age when most men are finding themselves, he has been forced to focus on managing day-to-day while studying in college. Sarah was robbed of a normal childhood by Crohn's disease; she came to hate her body that was distorted by high doses of steroids. Still, she completed her education, became a social worker, and married. "My life is what it is," she declares. Larry medicated his bipolar disorder with alcohol and ended up in an institution. Now, he keeps his manic depression under control with lithium and has become a passionate advocate for the mentally ill. "Hope is to the soul what oxygen is to the body," Larry says.
This is a tough read. Cohen unflinchingly discusses not just the physical but also the psychological ramifications of chronic illnesses as well as the implications for the patients' families. My one criticism is that Cohen's four hundred page narrative could have been trimmed, since at times, it is rambling and repetitious. Nevertheless, I applaud Cohen for removing the veil from a topic that has been infrequently addressed and for exploring important themes: How do people cope with incurable diseases? What can friends, doctors, family, and the general public do to lighten their burdens? If a few minds and hearts are changed by reading "Strong at the Broken Places," then it will have served its purpose. Cohen speaks for all the chronically ill when he says that he hopes that people will "view us as more than our diagnoses and find value in who we are and what we can offer."
on June 25, 2008
I was drawn to this book because I admire how the author Richard continues his life as a brilliant journalist despite a chronic illness. And because last year for the first time I was in the hospital myself for several days unexpectedly.Yes, for the first time in my life it was me in the hospital bed. AND I realized how challenging it is just to be INSIDE the hospital, let alone think about dealing with a chronic illness and living a life of hope. You know sometimes it's tough to keep up hope every day. This book is like six different volumes in a way -- it tells the story of five different 'citizens of sickness' and then a collective meeting with them all. You will find it a) inspirational -- b) informational and it will live on in YOU. I keep thinking of Denise who as the author says traded an impossible challenge (of conquering ALS) with a rigorous task (going to Antartica to see the penguins) she could complete. How come we all don't make plans to see the penguins or whatever it is that symbolizes our own vision in life? Each story of each person is more poignant than the other. This is not sniveling stuff-- it's real and not all nicey nice either. But it is fascinating to see how these people including the author turn their anger into fuel to keep going. Richard talks straight to you with his writing. I often feel like I'm sitting in a coffee shop or yes, a bar having a beer with this guy...he's honest. IT'S NOT EASY...heck it's really TOUGH and other words that won't get pass the Amazon cyber censors. BUT it is inspiring to thing that we may all be strong at our own broken places. Too often those of us from challenging families or who face chronic illness, pain or other obstacles feel 'defective' because of our difference. The author shows how to channel that into strength. This is a great book for anyone going through a life transition -- divorce or a major move or graduation or starting a new venture. For it is in the challenges that we discover opportunities. ENJOY -- every parent, every therapist, every doctor, every counselor and everyone into self-improvement will want to read these real words.
on February 20, 2008
Richard Cohen has done a masterful piece of reporting and research on five uniquely different persons. From Denise with ALS, Buzz with Non-Hodgkin's Lymphoma, Sarah with Crohn's Disease, Ben with Muscular dystrophy,and finally to Larry with Bi-polar disorder & Manic Depression!
All of these physical and mental disorders have common outcomes which are named in the final Reflection of RMC before the Harvard Medical Doctors! Since I am coping with both Parkinson's + Prostate Cancer, I am drawn to several of these, along with Richard the Narrator. He has the personal touch to place the reader into each story. In my case he gave me new inspiration, hope & courage!
Larry Fricks' is the most difficult to read with all of his bouts with Alcohol, Depression, Breaking the law, being in Jail, Attempts at suicide, Hospitalized more than once, hooked on Thorazine! (I can identify with that) Two marriages to Kimi and Grace, with only the last one being successful! Also Richard reports his illness as turned-around to positive near-healing being a Journalist and Advocate for other Mentally Ill. He finally became a spokesman for the first Mental Health Conference of the Surgeon General in Washington at the White House!
I read this very slowly in many sittings! Although it is tough reading, it has positive outcomes, especially in the Reflections. Recommended to all who relate to any of these disorders or hopefully, one not-yet discovered. Retired Chaplain Fred W Hood
on March 7, 2008
I believe this book is a must read for everyone. It touches you, it pulls you, it makes you want to scream and yell, it breaks you apart and puts you back together...but most importantly, it makes you appreciate all that is good about your life.
I have Crohns disease and I have a mental illness, two of the topics touched upon in this book. But I am a better person today for having read Strong At The Broken Places because I know that, in spite of my infirmities, I am strong and I will survive.
Thank you Richard Cohen!!!