Wednesday, July 16, 2008

Book Review: Strong at the Broken Places Essential for Patients, Loved Ones

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Richard M. Cohen's book Strong at the Broken Places: Voices of Illness, a Chorus of Hope should be required reading for anyone living with chronic illness, caring for or treating someone with a chronic illness or who loves someone with one.

Cohen, himself living with the degenerative effects of multiple sclerosis, shares the stories of five other people living with various illnesses and trying to carve out a meaningful life around their limitations.

Cohen spends astonishing amounts of time with each person, learning more about his or her experiences, challenges and fears. He has a gift for providing readers a window into the person behind the illness, disability, pain and isolation of chronic illness.

Because he can so easily relate to their experiences, he is able to provide additional insight while reporting their stories and explaining their perspectives. I found myself nodding my head and placing a little marker to denote a particularly interesting point many times throughout the book. So many of the ideas presented will resonate with anyone who has been touched by chronic illness, regardless of the particular type you or your loved ones are living with.

When Cohen shares Denise's story of living with ALS, he wisely notes that the strain illness places on families fuels the flames of all the issues we all struggle with on an ongoing basis. It seems that all our tendencies, both positive and negative, are exacerbated by the stress and strain of illness.

In talking about Buzz's experience with non-Hodgkin's lymphoma, Cohen notes the isolating nature of illness for both patients and their loved ones. Not often discussed, but noted by Cohen, is the way some doctors will distance themselves from patients when there is nothing more they can do to help them. So many of us have been through this painful experience and know how devastating it is to be pushed away when you have invested so much energy and time into building a good relationship with your treatment providers. It feels like a punishment. It feels like you've disappointed someone who you have tried hard to please.

Ben is a college student with Duchenne muscular dystrophy whose condition has confined him to a wheelchair. I found myself really relating to Ben in that he doesn't feel at all well adjusted about his situation or being different. Ben has a little bit of a dark side and has trouble having hope that his circumstances will ever be much better than they are now. He is self aware, but it is hard for him to accept help or ask for it. I'm the same way. Losing my independence has been one of the most difficult aspects of my new life.

Sarah, a young social worker who lives with Crohn's disease, is torn by displeasure at the negative effects life saving drugs have had on her physical appearance and their role in allowing her to live and achieve the things she has, including a happy marriage and a successful career. When she wonders aloud whether the treatment is worse than the disease, I am reminded of some of the medications I have taken for migraine prevention and the devastating side effects they brought along with them. For me that felt like an extra level of punishment, adding insult to injury. I found it very easy to relate to Sarah on that level.

Larry's story of how bipolar disorder has impacted his life felt familiar as I thought my of own depression and the stigma of living with mental illness. Not knowing how or whether to tell people, including employers, about your condition is something I, like Larry, have struggled with. If you tell you face prejudice and discrimination. If you don't and have a particularly bad time they will find out anyway and probably wonder why you didn't tell them ahead of time. There is no right answer.

The act of reading this kind of book is in itself a way of repairing the feeling of isolation and misunderstanding that so often accompanies the lives we live as chronically ill people. There is a lot here to digest and I know anyone who reads it will find something to relate to in each person profiled in it.

Visit the Strong at the Broken Places website for more information about the book, the author and the people profiled in the book and an interactive community.

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