For Love of Lois Book

Strong at the Broken Places: Voices of Illness, a Chorus of Hope is an intimate look at living with chronic illness. Author Richard M. Cohen, who himself has multiple sclerosis, works with five participants who have various chronic illnesses to capture their stories and help others understand the overwhelming toll that chronic illness can take. The participants are Denise, who has has ALS (often known as Lou Gherig's disease), Buzz, who has has non-Hodgkins lymphoma, Ben, who has muscular dystrophy, Sarah, who has has Crohn's disease, and Larry, who has bipolar disorder. The author engages with those featured in the book over a span of not just months but years, getting to know them on a far deeper level than simply the words they chose to use.

This is not a sanitized, at-face-value look at chronic illness. Rather, it probes the depths of it, encompassing the myriad ways in which chronic illness affects the lives of those it touches both directly and indirectly. The author skillfully ties the stories to one another, illustrating the many commonalities among the experiences of disparate chronic illnesses. The book gives voice to those who society tends to silence: "Too often the sick are seen and not heard. Listen. Their songs are soft but steady. Hear the sound of steel, the quiet toughness at the core."

There were a few things that surprised me and at times somewhat disturbed me about Cohen's approach. He openly brings in his own opinions and expectations of how the participants should behave, including questioning Buzz's decision to accept his oncologist's recommendations rather than seeking additional information or other opinions. Initially this struck me as inappropriate, but as the book progresses, as a reader I become more comfortable with it, as the purpose seemed to be a deeper exploration of the participant's ideas and behaviours.

The author's interviews with people who knew the ill participant initially felt awkward to me as a reader, seeming almost a betrayal. In particular, his attempt to interview Buzz's 9-year-old son accomplished little besides making the child uncomfortable. However, in checking my own reaction I recognize that at least to some degree I'm projecting because of of my own illness.

A mildly irritating quirk was that the dialogue didn't contain the contractions that would typically be used in casual speech. This made the dialogue feel a bit stilted at times, which is unfortunate, as it seems unlikely that this accurately reflected the quality of speech.

Cohen describes the "daily brushes with public ignorance and indifference and the stigma of being sick in a society that worships health, brand and define us." The weight and pain of the burden this imposed were difficult for the participants to carry. Larry likened chronic illness to a battle with two fronts: the disease itself and public ignorance. Denise's slurred speech led people to ignorantly jump to conclusions, such as assuming she'd had a stroke or was drunk. Sarah was quickly identified as abnormal because of the side effects of long term steroids, which significantly reshaped her face and body, and this took a heavy toll on her self-image.

I had to smile when Cohen identified "How are you?" as the most insincere question that people ask. I share the experience that "people really do not want to know and inquire under the assumption that no one will be rude enough to actually answer the question honestly." Another point that strongly resonated with me was Larry's experience that others tended to place him into a diagnostic box, attributing much of his behaviour to his illness. "When does the diagnosis stop and the human being regain a sense of control of a life?" he asks.

Social support varied amongst the participants, and maintaining relationships could be challenging. Denise was divorced and had limited family support. She pointed out that she was alone before she was diagnosed, and there was no reason for that to change after her diagnosis. She observed that a benefit of this was not having to experience guilt over being a burden on a spouse. The author repeatedly challenged Denise on her choice to be alone, which initially struck me as imposing his own preconceptions. His attempts to intercede in Denise's family situations seemed like inappropriate interference, even meddling, or a misguided attempt to apply his own agenda. Yet again, I must check myself, since like Denise I have chosen to isolate myself because of my illness.

Roles and identities are a recurring theme across the participants' stories. Buzz, unable to work, fell deeply into debt and feared ending up homeless, which compromised important role identities he held as a husband and father. Ben's parents, especially his father, struggled with the idea that their son would die before they did. Sarah's illness "constantly makes me second-guess myself and question who I am".

Buzz drew heavily on his faith in God to maintain a positive outlook. The stoicism that resulted was challenging for those around him to face. Larry identified himself as a very spiritual person, and found it frustrating when doctors dismissed his spiritual experiences as psychotic, attempting to "force patients into non-psychotic behaviour with such zealotry that they dismiss too many possibly positive and healthy dimensions of the patient's mind, body, and soul."

Hope was a theme that arose often. Larry struggled with doctors who would try to take away hope, saying he would never get his life back. He felt they had no right to do this, and he saw hope as being as necessary for the soul as oxygen for the body. The book concludes on a very hopeful note, with all of the participants presenting their stories to Harvard Medical School faculty and students. Meeting one another and speaking together was a way to come together as a community and connect in finding hope, voice, and inspiration. Through the advocacy work they engaged in, they were able to take ownership, find a sense of purpose, and establish identity. As Larry observed, "We are connected, and were strong at the broken places."

This book is a fascinating journey into the depths of chronic illness, and while there are some elements I wish were done differently, the message of being strong together at the broken places is certainly a powerful one.

First published on the blog Mental Health @ Home