Dirty Details

foreword

foreword Dear reader, be prepared. This is a powerful and stirring book. It is unsparing in its honesty, its bluntness, its directness . Marion Cohen pulls us, willingly or not, into the daily life experiences of being the well spouse of a person with a debilitating and messy disability. She does so with little patience for the obfuscation of the harsh realities of transportation , communication, dressing, feeding, and, indeed, toileting that so frequently accompanies other tales of care giving. This book is almost a rebuttal to the comforting impression held by so many that there is a nobility in care giving that outweighs the mundane drudgery that it also entails. The anger that permeates parts of this book is at first overwhelming and, for some readers, may threaten to deflect the focus from the book's basic message. It is important to be prepared for this possibility. Like me, you may find yourself working through many, many reactions to the story-reactions that may serve to help you dismiss the gripping dirty details that shock, fatigue , and confront you. I couldn't read this book in one sitting. I left it for days while I struggled with why I found it Vll Copyrighted Material foreword viii so hard to digest. Why was she so angry with everyone who tried, in their own manner, to be helpful? Why couldn't she say thank you to those who wanted to support her but couldn't make the commitment that she needed? Couldn't she see others' perspectives on her situation? How could she possibly have time for home schooling in the midst of her care-giving responsibilities? Was she pushing herself over the edge by being a writer, a lecturer, a teacher, a majorleague nurturer of her children, AND a full time care giver? Where's the balance we so often invoke as the ticket to happiness? And, fitfully, Why can't she be more gracious about this situation? Ah, here's the real problem. We want our care givers to do their work with panache, with love, with nerves of steel, with dedication, and, please, without constant complaints. We don't really know how to deal with dire straits-as individuals, as communities, and as a society. These are the ungenerous (and, in retrospect, embarrassing ) reactions that the book can provoke in a reader who has yet to live the life Marion Cohen describes, who has yet to experience the "conspiracy of silence" that this book so brilliantly exposes, who has never needed to define "where I stand" regarding human endurance in impossible situations . This book ultimately puts the uninitiated reader on the defensive, as it forces a clearer examination of what we would do in Cohen's place. Now the anger starts to make sense. The "conspiracy of silence" feels pernicious, duplicitous , and horrible. Cohen's description of her struggle to know where she stands clarifies her purpose. Her plea is for both selfknowledge (How much could and should she endure?) and Copyrighted Material foreword IX professional honesty (What are the options?). This is the challenge she presents to the silent conspirators, and to society at large. Her plea reflects the need to calibrate her deep reservoir of energy and commitment to her husband with the options that might be presented to her in a nonconspiratorial world. One senses that even if she had known how to move on different options sooner, she would still have had to go through the process of facing and enduring dire straits before she could know where she stood. This is the central dilemma. Care giving is an intensely personal issue that people do either because they want to (our emotional bonds fuel this reason) or because they have to (the conspiracy of silence helps here). People's stamina and tolerance vary immensely and reflect deep notions of personal responsibility, the prior history of the relationship, and cultural or societal expectations. The limits of care giving also reflect, however, the options that we design and support as part of the health-care system. When we exhaust people who are care givers by making them endure dire straits in order to prove their need for relief, we push people beyond their sensibilities and engender the kind of anger and bitterness that mark strong sections of this book. It could be so different. To help readers understand and internalize this message, Marion Cohen had to...