Ninety million Americans battle chronic illness every day. But often when we think of illnesses like muscular dystrophy and Crohn’s disease, we think of the catalog of symptoms suffered by victims and not of the human beings who must live every day with these diseases. In a world where normalcy is celebrated, what is it like to live life in a wheelchair or dependent on a cane? Richard M. Cohen — author of the best-seller “Blindsided,” and husband of TODAY host Meredith Vieira — who struggles with multiple sclerosis himself, brings to life the story of five extraordinary people who are living with chronic illness in his moving new book, “Strong at the Broken Places.” Here’s an excerpt.

Denise Glass: Fighting for control
Denise Glass’s voice was slurred and strained, as if she had to deliberate each syllable before it could be uttered. By now, our long-distance conversations regularly left me thinking that mere talking must be exhausting for her. Her phone call on this autumn day was breathy and urgent, betraying her need to clear the air about some issue.

“Richard, I have to ask you something. I want you to tell me the truth,” she instructed. “You keep saying not to pick you up at LAX,” the airline code for Los Angeles International. “Are you afraid to ride with me because I have ALS?”

Silence. I thought I detected an implicit accusation in her question. “No, Denise,” I replied slowly, feeling my way along. “I just did not want to inconvenience you.” I stopped. “And besides, why would I worry about speeding along the Ventura Freeway in a car, going eighty miles an hour, maybe, sitting in the front seat next to a tiny woman who can barely see over the wheel but is driving, and who, by the way, has ALS? I mean, what could go wrong?”

Another silence. This one had me worrying that I might have gone too far this time. Denise and I had been talking with increasing frequency and intensity on the phone. And our long-distance dance was drawing us ever closer to a painful reality. We had to meet face-to-face. Only then might the walls come tumbling down.

Maybe this woman did not find my remark so funny. Laughter does not come easily in a conversation about ALS (also known as Lou Gehrig’s disease). I well understood why Denise would be defensive, would be checking her radar for indications of condescension or just plain ignorance.

A familiar easy giggle across thousands of miles carried the reassuring answer: I had not destroyed our evolving relationship with my clumsy attempt at using humor to diffuse the awkward moment, something I had been doing for so many years in dealing with my own struggles with illness in an indifferent world.

But would Denise rise to the occasion? “Yeah,” she got out laboriously. “Who knows what will happen with me behind the wheel?”

In the back of my mind, I wondered the same. ALS was new to me, with one more letter of the alphabet and, in most cases, many times the pain of MS. Denise behind the wheel did seem slightly scary. “Well,” I remarked, “I figure you know what you are doing, and I assume you have no plans to kill yourself.”

Again there was a pause before her flat reply: “Yet.”

To that, I said nothing. Yet.

About Denise Glass
Denise Glass lives in the Santa Monica mountains of Los Angeles. She has worked as a legal secretary, executive assistant, and even ran her own business at one point. Late in 1999, Denise noticed that her speech had slowed and swallowing had become difficult. After several misdiagnoses, she was diagnosed with non-hereditary sporadic ALS, also known as Lou Gehrig’s disease. A neurodegenerative disease, ALS will eventually travel down her spine and affect her arms, legs and points in between. There is no cure or treatment. Although her family lives in the nearby suburbs of L.A., Denise is a self-reliant woman who has chosen to fight her disease independently.

Buzz Bay: Keeping the faith
“I am okay,” Buzz Bay said in a shaky voice, blinking away sleep and grinning up at me. The 46-year-old man in the bed was gaunt and hairless, the pale portrait of cancer that so many among us sadly see in our own worlds. He had been admitted a day earlier to a hospital in Beach Grove, Indiana, with a ureter painfully blocked by pressure from a malignant tumor.

A white hospital gown was opened at the side a crack, displaying tubes growing from strange places on his body, stretching into various bottles and containers attached to a pole on wheels. The urine output of one kidney trickled out of his body through a rubbery hose he wore out his side.

Buzz had just awakened from a gentle doze, and he was instantly ready to talk. “How was your flight out here?” he asked. “Did you find the hospital easily enough?”

“Buzz,” I asked back, “how are you feeling?”

“Oh, I am fine.”

“Really?”

“Yup. Upright and taking nourishment,” he answered, hardly upright at all. This was not the first time nor would it be the last that Buzz kissed off that question. As with Denise, a long warm-up had preceded the visit. We had talked numerous times on the phone and exchanged e-mails — words, not intimacy, at a safe distance.

This was not the way I had planned our first meeting. I had been about to head for Indiana to teach at DePauw University when I received a call from the Leukemia and Lymphoma Society, telling me Buzz was in the hospital.

Soon enough, I found myself in Indianapolis, speeding south from the airport with my friend from DePauw. We cruised down the interstate, a straight shot of concrete, into the heartland. I was worried. In our recent telephone conversations, the incoming chatter had been weak and without energy, betraying the unmistakable sound of a weary man. Buzz had been in the middle of a chemotherapy cycle, the treatments exacting a terrible toll.

Buzz has non-Hodgkin’s lymphoma. Lymphomas are cancers that grow in the lymphatic system, an integral part of the body’s immune defense system. As with most cancers, lymphomas take many forms. One type, Hodgkin’s disease, can be relatively benign, with survival rates exceeding 90 percent.

Non-Hodgkin’s, though, is an aggressive and virulent lymphoma. It can be treated but not cured. The chance of surviving five years with the disease is less than 50 percent. This brand of lymphoma struck down activist Dick Gregory, King Hussein of Jordan and Jacqueline Kennedy Onassis.

Still, Buzz has always been curiously upbeat, with depleted strength but an expansive optimism that flies in the face of the facts. I was unsure about meeting him for the first time at his worst, but he encouraged my visit, particularly since I was going to be in the area. Plus, our brief encounter would allow me to meet not just the man but the family. We would all use the next few hours to size up each other.

About Buzz Bay
Buzz Bay lives with his wife Susan and son Ryan in Franklin, Indiana, a small town 25 miles south of Indianapolis. In August 2001, he was diagnosed with non-Hodgkin’s lymphoma — doctors had discovered a malignant tumor in his stomach. Since then, his cancer has become more active and spread to his cerebellum. A devout Christian, Buzz believes that a positive attitude is 98 percent of the battle. He started working as a hospice volunteer in 2005 and a year later joined the staff. His devotion to his faith and church is the linchpin of his life.

The author and Denise, Buzz, Sarah, Ben and Larry

Ben Cumbo: Facing down demons
The snowflakes were fat and wet, falling halfheartedly through a gray sky over Kent Hall as a ragtag army of students moved through the old building. On this blustery late March day, the Cultures of Africa seminar was supposed to begin mid-afternoon.

At the appointed hour, young men and women straggled in, but there was no professor and no sign of Ben Cumbo, my subject on this day. The place reminded me of all the college halls that had incarcerated me in my years as a reluctant student. Undergraduates were fidgeting in worn seats as if they would rather be anywhere else.

Getting to St. Mary’s College of Maryland had not been easy. The school is a remote outpost, resting above the St. Mary’s River at the southern tip of the state. Buildings sit close to the point where the river’s brackish water joins the Patuxent and flows into Chesapeake Bay.

“You can’t get there from here,” the saying goes, and had been offered as a warning by my friends in Washington, D.C. They were not kidding. The college is not accessible by public transportation from the nation’s capital or anywhere else. Only an old buddy traveling in the same direction got me there.

We drove south from Washington on highways leading to smaller roads winding through the countryside. These country roads deposited us in surprisingly rural terrain so close to the big city. The school was surrounded by farms and fences, with the giant Patuxent naval station looming in the distance.

I walked around Kent Hall, lurked in the hallway outside the classroom, and scanned the young faces, searching for Ben. Finally, as Ben’s teacher approached the classroom, a mass of papers in hand, I heard an elevator door open and I turned. The signature hum of a motorized chair was audible, announcing Ben’s arrival. Ben looked up, silently nodding.

Ben was a good-looking fellow, with strong features and intense dark eyes. At eighteen, he was small for his age, though that was not immediately obvious because he spent most of his time in a wheelchair that was both his prison and his liberator. Ben’s size was the side effect of regular steroids that might prolong his life but had stunted his growth.

Ben’s wheelchair was a mean machine. “Can that thing go fast?” I had asked at a previous meeting. “It moves,” Ben had chuckled softly. “Out in the open, on a smooth surface, you would not be able to keep up with it.” No kidding, I had thought, glancing down at my cane.

Ben performed a quick 180-degree turn in order to leave the lift and head to class. In one smooth motion, he shook my hand as he rolled by, gliding past the others milling around the large seminar table. He had mastered precision, executing tight turns and swinging around to position himself near the professor. The maneuvers seemed effortless. I slipped into an empty seat next to him, sitting in silence for a moment as we waited for the seminar to be gaveled to order.

About Ben Cumbo
Ben Cumbo is a student at Saint Mary’s College of Maryland and grew up just outside of Washington, D.C. At three, Ben was diagnosed with Duchenne muscular dystrophy, the most common form of the disease, which causes muscles in the body to become very weak. There are a few experimental treatments and there is no cure. In order to integrate his illness into his life, his parents became active in the local chapter of the Muscular Dystrophy Association when he was eight. Eventually, Ben became the Washington Goodwill Ambassador. Ben, who lives his life in a wheelchair, must rely on others while navigating his life at school.

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