Coping with Chronic Illness: a Book Review
"These are faces of illness in America. Do not look away."
- Richard Cohen, Strong at the Broken Places
My first post on HealthCentral was a rant about a poorly-worded review of Strong at the Broken Places: Five Voices of Illness, a Chorus of Hope by Richard Cohen. Although I felt the review was patronizing, I wanted to read the book. And I'm glad I did.
Cohen, who has Multiple Sclerosis and has survived colon cancer twice, spent several years interviewing five people with different serious or chronic illnesses: Denise (ALS/Lou Gehrig's disease), Buzz (non-Hodgkin's lymphoma), Ben (muscular dystrophy), Sarah (Crohn's Disease) and Larry (bipolar disorder). Each is given her/his own chapter and as we get to know them and their lives, Cohen discusses issues experienced by people with illness and disability and their families. Although the illnesses may be different, the experiences are remarkably similar.
Ben and Sarah have lived with chronic illness since they were children and Cohen captures how a child with a disability affects a family. The parents of both emphasize the importance of having expectations of your child in order to help them find a place in the world and make the most of the abilities they do have. Denise and Buzz talk about finding meaning and joy while living with a terminal diagnosis, Denise saying the diagnosis gave her the incentive to truly live, instead of plodding through a mediocre existence. Larry talks about the stigma of illness, about being imperfect in a world that expects perfection, striving to prove your normalcy every day and the "discrimination of low expectations." Other issues discussed include body image and self-esteem, the need to find control in a situation that is often beyond your control, religion and spirituality, the changes an illness brings to personal relationships -- both negative and positive -- isolation and the fierce, determined fight to live as best you can.
Making the most of life is a theme that runs through the lives of all five individuals. Each in their own way have struggled with the urge to quit, the fatigue caused by the endless compromises necessary when you live with an illness and the fight to stay hopeful amid loss. And there is hope, each having found people and places that lend purpose and meaning to their lives. All five have become advocates, involved in helping others with chronic diseases and educating the rest of the world. This is something that I have noticed in many people who live with illness - the drive to connect, to create change in the present and the future and to remove the barriers separating us from full participation in society.
Strong at the Broken Places is an easy book to read and a hard book. Easy because it is written in a wonderfully friendly style -- it feels like sitting down with a group of friends and talking about what really happens with illness and chronic conditions. Over and over again, I felt like saying "Yes! That's exactly how it is!" You come to care about Richard and his five friends and, often, what these people have gone through is heartbreaking and can bring back memories of your own heartbreaking times. But more than anything, this book is healing. Living with illness can be lonely - being in pain, feeling sick and having limits is isolating and it is easy to believe you are alone in your experience. Strong at the Broken Places normalizes what you're feeling and going through and there is power in discovering that you are not alone.
The importance of telling and sharing our stories is emphasized over and over again, bringing to the forefront the importance of connecting to others, to create a community where we can find solidarity with people in the same situation. One of the five says "we sick travel together and in spirit, we are one." Cohen puts his money where his mouth is (so to speak) and has created a community on the book's website where you can share your story and participate in message boards.
Strong at the Broken Places is a wonderful book, an important book. For those of us who live with chronic illness, it offers a sense of normalcy and breaks through the isolation. For family and friends of someone who lives with a chronic disease, it gives insight into their loved one's situation, as well as normalizing their own experience. For the medical profession who at times focus too much on the disease, the book expands that focus to include all of their patients' lives, not just the part that is ill. And lastly, for the rest of society, it challenges expectations, breaks stereotypes and shines a light on a group that is too often invisible.