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 Glasslives 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.”
“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 Baylives 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.
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 CumboBen 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.
Sarah Levin: Seeking normalcy
Sarah Levin and I shook hands at the airport, meeting for the first time. We stood outside the terminal, taking stock of each other as we made small talk. Then the two of us headed out, picking up coffees and driving into Cleveland. I watched intently, focusing on Sarah behind the wheel as she tooled along the highway into the city.
We were going across town to her office in Shaker Heights, passing close to some of Cleveland’s tougher areas. We left the highway so that Sarah could show me around. There was a reason for the quick tour. This young woman wanted me to see who she is and where she spends much of her days.
Sarah is a social worker who works with kids from the city’s poorest neighborhoods. Our trip now was taking us through some dicey districts. “As long as we are here,” she said, “I need to pick something up. It will save me a trip later.”
We pulled into a driveway in front of a house that had seen better days. Sarah needed to get a document from a client. I waited in the front seat, watching this small woman approach the silent house. The old wooden structure seemed foreboding, the neighborhood rough.
When no one answered the door, Sarah walked back past the car, holding up one finger, signaling, “Be back in one minute.” She seemed unbothered by where she stood, though this did not feel like a welcoming place. She disappeared around back and vanished. She has guts, I thought. She reappeared, papers in hand.
Sarah counsels troubled kids and their families at an experimental school that draws children from around the city. I had spent enough time in Cleveland during my years in the news business to remember journalists mocking the place as The Mistake on the Lake. A brief urban resurgence had given way to the feel of a Rust Belt town that could not keep up with a new era.
Sarah seemed to be smaller than life, a pretty version of Stuart Little’s kid sister, diminutive and always on the go. The two of us walked and talked, jumping or, in my case, stumbling back into the car to drive through more projects in areas Stuart would never choose to visit. Sarah seemed so small up against this urban wasteland with its big problems.
She described going into broken homes and dealing with hostile people, many of whom live with crack vials and cracked dreams. Troubled kids from that world can end up at Sarah’s school and in her life. “My friends ask, ‘Doesn’t it scare you to go into these projects and take chances to do your work?’” Sarah carries pepper spray when she remembers to, in case she is attacked. “Nobody bothers me,” she said. “I have been nervous at times but never really fearful for my life.”
There is another threat that she does take seriously. Sarah suffers from Crohn’s disease. She has a particularly bad case of that debilitating condition of the digestive tract. Crohn’s wreaks havoc continuously on Sarah’s already damaged body, creating daily doubts about her future.
This inflammatory bowel disease compromises Sarah’s life each day. She seems exhausted beyond her 28 years, as her soft, sometimes shaky voice betrays. “It is good,” she said softly, “when there is more time to sleep. I sleep a lot these days. I think a lot of the fatigue comes from the fact that I am always anemic.”
Chronic exhaustion is a byproduct of continual bleeding. Sarah had to have her large intestine removed, and the remaining upper digestive tract is so ravaged, it regularly hemorrhages into her belly. Bleeding is slow but steady, the blood working its way south to become rectal bleeding. “Internal, external, let’s just say bleeding,” Sarah said wearily.
She can speak openly without opening up in detail. Although she is a rock in her professional identity, she is uncertain socially and as a woman. This is not surprising; young women do not share the intimate specifics of intestinal misery with guys so easily. So Sarah lives as different people, one a shrinking presence, the other an expansive personality. A real-life incarnation of the Pushmepullyou, Dr. Dolittle’s mythical animal tugging in opposite directions from itself, her vulnerability vies with her resolve. “I am more the tough person who has days of being vulnerable,” she said. “Yeah, I do stand up in my life,” she exclaimed as if surprised by her own words. About Sarah LevinSarah Levinis a social worker who works with middle-class kids and those from Cleveland’s poorest neighborhoods. Only four when she had her first colonoscopy, Sarah has no memories of a carefree childhood. But it wasn’t until she was fifteen, after undergoing surgery to remove her colon, that doctors realized that she had Crohn’s disease, which affects the upper GI tract. She is on a regimen of prednisone, a steroid that causes her face to swell, stunted her growth and gives her horrible acne. Sarah lives close to her parents, who she relies upon, especially her mother, who has played an important role in her care. Sarah married her husband Ben in October 2007.
Larry Fricks: Surviving stigma
Larry Fricks and I drove into a remote southern town to arrive at what was once Georgia’s most notorious mental institution, Central State Hospital. The institution dated back to the early 1800s, and once carried the quaint name Georgia Lunatic Asylum. That day, the mammoth buildings of the old institution stood silent, as if they belonged in mothballs.
At one position near a long incline, a 360-degree pan revealed endless fields of graves extending in every direction. Nothing about any of the simple graves said anything of their occupants. Religious symbols were conspicuously absent. “The graves were not worthy of being protected and kept up,” Larry Fricks explained. “Many markers were pulled so they could mow the grass. Even in death, these folks were just forgotten.”
The man tried to hold back tears. “Growing up,” he began again calmly, regaining composure, “I was taught that out of respect, not to even step on graves. It is acknowledgement that a human has lived on this earth and that we are all connected.”
Over the years, the hospital became known simply as Milledgeville, after the town where it is located. “Behave yourselves, children,” the admonition went, “or you are going to Milledgeville.” Generations of Georgians still talk about hearing that threat and calling a halt to their bickering.
The place was quiet and deserted on this silent September Sunday but still it was imposing, even threatening. The drab stone structures had been home, or rather prison, to almost fifteen thousand troubled souls at any given time. The hospital had been a warehouse for the mentally ill.
Milledgeville became a freak show in Georgia culture. Tourists flocked to the grounds to take in the sights. The facility housed the largest kitchen in the world, an awesome attraction on the school trip circuit. Larry’s voice choked as he spoke of the hospital’s horrible history.
Electroshock therapy, routinely administered with portable units transported around the floors, was a prime means of maintaining order. One amused superintendent is said to have routinely lavished praise on the “Georgia Power cocktail.” Psychiatrists were heard to demand of patients, “Did Georgia Power make a Christian of you today?”
Larry brought me there because the history and meaning of the spot have haunted him for decades. “This place is the story of stigma,” he explained. “People were brought here and told that they have no role on Earth anymore.” He paused. “This could have been my home if I were not white and middle-class and reasonably connected.” He paused again. “I am mentally ill.”
About Larry Fricks
Larry Fricks lives in Cleveland, Georgia, and was diagnosed in 1984 with bipolar disorder. In denial of his illness, Larry spent much of the mid-’80s in and out of mental hospitals, using alcohol to control his manic periods. Now, married to Grace, a small business leader and a former advocate for people with developmental disabilities, Larry works as a mental health professional. In 1996, Larry spoke at a White House conference where the first surgeon general’s report on mental health was released. Although he fights every day against the stigma of mental illness, Larry has said he would change nothing “To take my illness, would be to remove the meaning and purpose I now have. Mine is a purposeful life.”
Reprinted from “Strong at the Broken Places: Voices of Illness, a Chorus of Hope” by Richard M. Cohen with permission from Harper. All rights reserved.