I have found great solace and understanding from the incredible books by Richard M. Cohen. Cohen has battled Multiple Sclerosis (MS), two battles with colon cancer and loss of sight, and he is still standing. His first book is a memoir on his battles called “Blindsided: Living a Life Above Illness” (2004) And his most current work in INCREDIBLE:
Strong at the Broken Places: Voices of Illness, A Chorus of Hope 2008
In Strong at the Broken Places he chronicles 5 individuals with 5 different chronic diseases, one of the diseases represented is Crohn’s Disease.
I recommend both these books, especially the Strong at the Broken Places for those living with or affected by someone with chronic disease. It will blow the lid of the “secrets” that the 90 million Americans living with chronic disease face in shame and privacy.
Photo via: Strong at the Broken Places
“These are faces of illness in America. Do not look away. The characters may surprise you, even shatter a stereotype or two. They are people, not cases, survivors, not victims. Quite simply, they are us. They carry shared resolve, a determination to survive. To flourish.
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. Pay attention. These people sing to themselves and, if we choose to listen, to us all. I, too, know sickness and have joined the chorus. We walk together as one, each with an individual identity and unique story.
My story of coping with multiple sclerosis and colon cancer was told in Blindsided. That struggle did not end. The book came and went and a weakening body took no notice. Illness kept cutting its swath. I am angry and hurting, and each day I need to relearn the lessons I had the temerity to believe I could teach. Arms and hands weaken, legs and feet falter. My vision suffers, squints revealing progressively less at any distance. Now I look to others to find the road out of the dark forest.
We, the injured, are everywhere. We are fast becoming a nation of the sick. The numbers do not lie. Chronic illness has become the silent flood, flowing slowly, steadily under our doors. We tumble in slow-motion from safe ground, twisting and struggling to survive in a cold sea of all that we once were and can be no more.
Chronic conditions attack body and spirit, assaulting the quality of our lives. Some are life-threatening. All are life-altering. Ever so slowly, moment by moment, function and sensation cease. Muscles and nerves malfunction. The body’s processes grow difficult. Our view of ourselves as normal human beings making our way in a neutral world is challenged as, in the eyes of others, we become our illnesses.
Chronic conditions do not resolve themselves. Unlike terminal illnesses, there is no high drama with these diseases. They are not sexy, and are little noticed or understood by an unknowing public that would prefer not to think about them. Those who are hit hard know the frustration of being marginalized, reduced, and pushed to the side by these chilly attitudes. We are handed a cocktail of condescension and a basket of doubts about our limitations. The crisis of confidence that follows can be contagious and soon affects every part of our being.
With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person’s world change dramatically. The slow slide down carries us, and we lose control.
Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us. When I wrote Blindsided, I felt alienated and isolated. I now know I am not alone. Many travel the same road, and common ground lies beneath our feet.
We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer each other. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration.
This book profiles five strong people on the front lines of illness. Each fights a different war. All are ready to share. Sometimes they hobble, even stumble, but they are extraordinary for their resolve. They will finish on their own steam according to their own terms. They, and their families, speak from the heart and tell their stories with pride.
This gang of five is not timid or shy or self-conscious about their physical flaws. They are unapologetic about their body’s weakness. They try so hard, struggling to travel well on one of life’s toughest journeys.
Hemingway had it right. If the world is not the enemy, neither is it our friend. In the end, no matter who surrounds us, we travel alone. Our friends and loved ones are there, providing an infrastructure of love and support. But courage must be drawn from within. Let the world see us as we see ourselves and have the faith to permit us do it our way.
I have been in these people’s faces for years, brazen enough to ask the questions others would be too polite to touch. That was allowed, and so far, we are still talking.
I admire each of these people and am proud to call them my friends. ” – Richard M. Cohen
This wonderful article from the New York Times about “equal shared parenting” really sums up how I like to think Mark and I have learned to manage our life. Although we are not parents, we do have a dog, and we did have UC for many years. I think that the UC and fight with that really taught us how to become a team, and do things in life using a model of “teamwork.” There is this blend of compromise but an equality overall of who does what, when, how much, etc…But what I value the most is the shared emotional aspect. 
