MAGICALLY, THE FACES from my book showed themselves as the appointed hour passed. The clocks with their muted chimes tinkled softly, almost mysteriously, from various positions around the old place. Characters were stepping out of the manuscript, a work in progress, to finish the job.
The invited guests, who were meeting for the first time, seemed serious but not at all somber. All were on their best behavior, a bit nervous and looking hard into one another’s eyes. They seemed to be searching for something only they could identify.
I had embarked on a journey to see chronic illness through lenses other than my own. I had searched hard for and found a cast of five. For two years, I crisscrossed the country, passing through airports and down highways, listening, probing, and forming a new community with these amazing people.
Slowly, we began to share our troubled lives, our recipes for coping. At hospitals and in homes, on living room couches and at dining room tables, these extraordinary people began to reveal themselves. I heard their stories of sickness and listened hard as they described how their lives were changing.
My journey began on the California coast, northwest of Los Angeles. At the base of the Santa Monica Mountains, I met up with Denise. ALS, a hideous neurodegenerative disease, has redefined life for this woman. No doctor is going to save her. Denise fights to move forward. By choice, she stands alone. “Why do I need people?” she demands.
This woman’s features can seem carved in stone. As we sat above the Pacific watching the waves below, Denise and I discussed ALS, better known as Lou Gehrig’s disease. The lady could laugh. Sometimes she would cry. We sat on a favorite wooden bench as she talked about where she might be taken next.
Far to the east, a graying middle-aged man explained that Jesus is going to cure him of a terminal illness and, yes, he is at peace. Buzz’s smile lit the already bright outdoors as we crossed the town square at noon. He is a man of faith, a point of view that I strive to understand.
Buzz is struggling with non-Hodgkin’s lymphoma, and deep into the fight of his life. Lymphoma used to be an automatic killer. The cancer cannot be cured but, for many, now can be managed.
“I would be angry,” I tell him. “Why should I be angry?” he asked back. We had spent days hanging out in his little Indiana town, deep in the Bible Belt. His family and I had toured neighborhoods and gone to their church. I took Buzz at face value, and measured his quiet composure.
A thousand miles farther east and in separate cities, two young people waited for another visit from me. Ben is a college student whose muscular dystrophy has left him in a wheelchair and in need of constant care. He struggles to make the present work as he stays sanguine about his uncertain future. The young man fights sickness and his fear of others.
Sarah almost died as an adolescent and was robbed of a colon by Crohn’s disease. The siege continues. Confidence in her future ebbs as she bleeds from her gut. Her digestive tract continues to decay, and she fights to face her life. Ben and Sarah were toddlers when illness arrived. Each wears sickness from head to toe, and has never known health.
The diseases are different, the scars often similar. Both endure illnesses that grow only worse. One likely will leave before his time, the other, embrace a compromised life. “I am broken,” Sarah says. “I will be alone,” Ben predicts in a soft voice.
And there is the mountain man with the heart of a giant. A disease of the mind, bipolar disorder, had laid him low. Yet Larry has climbed high, his ascent greater than his fall. He is a better person for the journey. “We are all connected,” he tells me, his beard white with the years.
These five have run the gauntlet, enduring a range of chronic illnesses. They are spectacular people whose willingness to share and give of themselves has been remarkable. The more I heard from each, the deeper grew my thoughts and connection with all of the others. And the better I understood myself.
I had spoken of each to the others, and their mutual fascination was not idle. We understood that we are all traveling the same highway and finally our ragtag army of the wounded had to meet, to talk and share.
What a wild thought, though we had to make it happen. We would connect the dots together in one place. They were so ready, longing to touch and be touched. Angels flew close. Wheels turned. They packed their belongings and their stories, crossed the country and converged.
The setting was the Harvard Club in downtown Boston. The space had seen better days, as had we all. This club was a caricature of itself, a monument to the privilege of another era. Entitlement was sewn into the upholstery. But this slowly gathering group was so un-Harvard; certainly there is no privilege in being sick.
If these were strangers, their presence was anything but strange. Every pore in that gilded room was open for business.
Ben sat tall in his wheelchair, shaking hands with Buzz. Black was meeting white, youth, middle-age. Ben is a college student, Buzz a working stiff. Muscular dystrophy is a disease of the young. Lymphoma had struck a man simply struggling for the chance to grow old.
Denise was among the last to show at the dinner, though she had been the first to venture into Boston the night before. California to New England had been a trek. Tonight, the little lady led with her walker, pushing forward as she said hello to Sarah. Smiles did not waver.
I had imagined this meeting for two years. Here, we would eat and drink, stand or sit, just hang out together to share. Something of great value would emerge. Of that I was certain.
My faltering eyes scanned the room. Only Larry was missing in action. For a second I wondered if he was in trouble but then realized that I was guilty of believing the tired stereotype so many people have about bipolar disorder. In fact, Larry is grounded and steady, and has become my touchstone for evaluating everyone’s behavior, including my own. Then Larry arrived.
Now it was time to go to work. The group had assembled. Some were surrounded by family. Others had brought only spouses, a parent, or a child. Only Denise had traveled alone. Our hosts were faculty members at Harvard Medical School. Their agenda was to give voice to patients and to encourage medical students to see their mission as treating whole people, not simply their diseases.
All of us carried stories about our experiences as patients in the world of medicine. Our mandate was to open a dialogue with future physicians about how to relate to the human being in the next bed.
For the sick, living among the healthy is no piece of cake. Empathy is in short supply. Daily brushes with public ignorance and indifference and the stigma of being sick in a society that worships health, brand and define us. Our group had so much to share.
First, we met privately. The following day we addressed the medical school community. No one in our group had played in this league before, yet all of us would prove willing and able to go to bat for our beliefs.
Clinical concerns had no place at our meeting. Those topics have their own home in worn volumes on shelves at medical schools everywhere. Too often, though, institutions of learning and doctors fail to widen the lens beyond the clinical. That may explain why doctors tend to see us as pages in those texts, notes in their charts. But that day at Harvard, we were people. We would offer living, breathing, rolling, walking, talking, stumbling stories of illness. Each of us has a take on surviving sickness, not to mention on the doctors who treat us. That material will not be found in those thick books on the shelves.
Chronic conditions become more common with age. According to the Centers for Disease Control, more than 80 percent of Americans over the age of sixty-five suffer from at least one chronic problem. Another 50 percent live with two.
America’s health is deteriorating, a new fact of long life. We are fast becoming the oldest population in the history of the country, and the numbers of the stricken only grow. While the diseases differ, the emotional fallout from illness bears remarkable similarities.
For one moment, our small group would stand together. With separate stories, we would find unity. All of us had offered up intimate details of our struggles for this book. Now the youngest doctors could look deep into our eyes and hear the timbre of the voices to measure the pain.
Know this. Ninety million Americans battle chronic illnesses every day.
Welcome to your future.