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 Saint 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 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 keep up with it.” No kidding, I had thought, glancing down at my cane.
Ben performed a quick 180º 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.
To say that Ben was quiet or understated is its own understatement. The guy was borderline silent. I had learned over the past year, through visits with his family, that conversation did not come casually to him. There was a pronounced self-consciousness that I had to work through whenever we met. It was almost as if his shyness were another chronic condition to overcome.
“When Ben gets going on a subject, he can go on at length,” his dad had told me. “When it comes to talking about himself or his life, he does not have a lot to say.” Ben’s father is Benjamin Cumbo III, Big Ben to me. I so wanted his son’s discomfort to end, though thus far it had not.
“I have never been to this part of Maryland,” I said to young Ben in a forced whisper. “This campus is pretty cool,” I added, leaning in toward him. “Yup,” he responded, eyes straight ahead, not even glancing at me. “It sure is in the middle of nowhere,” I offered up. Ben just smiled. Okay, then. Maybe the stilted conversation was due to our age difference.
Ben was but eighteen then and I, let us just say, three times that. Ben is African American, and I, Caucasian. We had not found our comfort zone, and personal conversations were awkward for both of us. Ben was in the starter’s gate, a disabled kid facing his first adventure away from the security of home. Time together made it plain that he is quietly angry, but so am I. There was a lot to talk about.
In this particular seminar, the discussion deconstructed various African subcultures, their customs and rituals. The content as well as the mixed demographics of the classroom—black and white, rural and urban, privileged and not—introduced Ben to a level of diversity that he was only slowly getting used to. How are we different? was the professor’s question.
Sitting close to Ben, I took note of his seriousness and the level of his concentration. During this two-hour class, more than occasionally, he took risks, asking and sometimes answering complicated questions no one else was touching.
When papers were returned to the students, Ben sat back apprehensively, waiting to see how he had done. His writing project had focused on the Shluh, a North African people and culture centered in the mountains of Morocco. Ben grabbed the paper from his professor, painstakingly reviewing the comments on each page. His face revealed nothing. I waited for him to say something, but his concentration went unbroken.
Finally, I leaned toward him once more and asked how he had fared. “I got an A minus,” he answered, finally betraying a small smile. There was no sense of celebration in his voice, no expression of satisfaction. “Well, an A minus is great,” I said. Again, there was silence.
“I do not want to lose my edge,” he explained later on the phone. “I want to do a better job next time. I am pretty much moving on to the next challenge.” The young man radiated discipline. But why so serious? I asked.
“I agree that many kids my age would have reacted more,” he said. “I have this work ethic. I force myself to buckle down. When I complete the class, the whole thing, then I will celebrate.” I found that hard to believe.
“How did you choose that topic?” I inquired in a whisper.
“I was interested in indigenous belief systems before the domination of Islam.” Huh? This kid is more disciplined and serious than I was at that age.
Ben only wanted to continue his discourse on religion. He was a Methodist by birth, but, he said, “I do not consider myself a Christian or Jew or Moslem. I just know I believe in God and take the good things where I see them.” He went on. “I am learning about my roots. It is interesting, cool to see where your ancestry starts, you know, where you are from.”
Ben is a true and earnest student who clearly loves being in college. His interest in Africa was intense. This second-semester freshman was 100 percent there, entirely focused, even as other underclassmen were showing difficulty recovering from spring break.
To Ben, the brief break had meant little more than an opportunity to catch his breath. Others in the class spoke about sleepless drives to Florida, of beaches and parties. Ben had spent the week at home, readying himself for his return. I was convinced that young Ben was compensating for the frailty of a damaged body by exercising the muscles of his mind.
For him, education and preparing for an uncertain future seemed a grim business. Completing his uphill battle, proving to himself and his doctors that he could move into adulthood, was the challenge at hand. Any youthful enthusiasm was missing in action.
BEN SUFFERS FROM Duchenne muscular dystrophy. The diagnosis came when he was just three years old, too young to understand. His parents were not. Big Ben, a swarthy man with a graying beard and hair, was a defense analyst who had spent thirty years in the Pentagon. Ben’s mom, Debi, stayed home briefly after her son was born, returning to her marketing job at USA Today until her daughter, Tyler, came along. Debi is straightforward and easy. She describes herself as stern when necessary, a pushover when there is nothing at stake. Debi now works for the American Council on Education.
Tyler Cumbo, three years younger than Ben, is a freshman at Hampton University in Virginia, a predominantly African American school. Big Ben’s daughter from a former marriage, Erin, is eight years older than Ben. Erin attended Howard University in Washington, preparing for a career in architecture.
Young Ben’s ancestors, he would learn with interest, probably came from the western coast of Africa. Ben himself hails from Upper Marlboro, a town in Maryland just outside the nation’s capital. Ben grew up in a quiet middle-class neighborhood. The Cumbos’ community used to be predominantly Caucasian. But white flight had worked its magic, Big Ben noted, making it more African American.
The Cumbo family’s journey into the land of illness began on Super Bowl Sunday in 1991. “Ben was a chubby little guy, very much a toddler,” said Big Ben. “He was in a preschool with another boy whose father was a doctor at Children’s Hospital in Washington. They invited us to watch the game at their house.”
Details of the chain of events remain clear. “The day after the game, I got a phone call from the doctor. We talked for a minute about the game, and then he made an observation.” Big Ben paused. “He said, ‘There may be nothing to this, but I noticed how Ben was going up the stairs.’”
Big Ben responded with little concern. “‘My son does seem to move around a little differently,’” he recalled saying. “‘Yeah, he will not be a major league athlete or anything, but we are taking it as developmental.’” Big Ben said the talk was low-key. “The doctor said, ‘Maybe, but why don’t you set up a couple of dates at Children’s for him to get some tests?’”
Big Ben was not worried about his son. “Ben was slower than the others. He did lag behind other kids when they were running. It was not a big thing. I just figured he is not going to be a speed demon. There was no indication. I mean…” he looked away as he trailed off. “This was a perfect little boy. He was laughing, running, the whole nine yards, and he took care of his infant sister.”
Recognition of an illness can come slowly, awareness beginning with subtle signals. The Cumbo story called up memories of a day long ago when I dropped a coffee pot and fell off a curb. Those minor incidents led to a clear-cut diagnosis of multiple sclerosis. The Cumbos thought there was no cause for alarm. “I was not worried,” Big Ben reiterated. “I just was not.”
The senior Ben recalled a series of tests on his son done in one day, procedures that generally take one week. “To make a long story short, at the end of that day, the doctor called us in after reading the results. She told us, ‘There is a seventy percent chance that your son has muscular dystrophy.’”
Big Ben said his blood ran cold. “Those two words linked in my mind to Jerry Lewis and the telethon. I was oblivious at that point as to what the disease was and what it meant.”
“This was news from nowhere.”
“Right,” the older Ben affirmed. He spoke slowly, reconstructing his disorientation. “‘What is this?’ I thought. ‘Where does it go?’ I remember this woman doctor talking to my wife. I was in a total haze of confusion.” And the numbers game began. “I was just…things were going through my head like only thirty percent chance he is okay? Tell me what that thirty percent is, what it means.”
The doctors, Big Ben said, were straightforward. “At first, they were great.” There would be more tests, first a muscle biopsy. Doctors said that would pinpoint what the problem was. Getting results might require as long as six weeks, which became its own horrifying prospect.
The boy’s parents spent their time researching the disease. They were riding an emotional roller coaster. “It was total angst the whole time,” Big Ben remembered. “There was a sense of panic, actually, wondering, how do we adjust if this is true?”
High anxiety travels with any looming, life-threatening illness. “‘Angst-filled’ does not get close to it really,” he said. “You’ve got to get through your day. I was at the Pentagon itself then, and I was overwhelmed.” Ben’s emotional openness surprised me. The man had been hanging out with defense types, hardly known for their candor, for his entire career.
The six-week wait did not materialize. The call came within ten days. The Cumbos found themselves back in the doctor’s office. “It is amazing how the visual plays in your mind.”
“How so?”
“Professionally, I am in a visual world. Maps and photos and satellite images,” he explained. “The intel [intelligence] business is all about bits and pieces being put together.” I did not understand where this was going. “We walked into the doctor’s office, and there were drawings in great depth. It was an omen.”
“Of what?”
“The drawings are not there if the news is good.” Big Ben’s sixth sense was on target. “‘We are certain that this is muscular dystrophy,’ the doctor announced.” I could sense Ben’s emotion rising. “‘We feel ninety-five percent certain.’” Everything in medicine seems to be hedged in percentages, sort of like handicapping a horse.
“‘There are three kinds of muscular dystrophies,’ she went on.” Ben’s exasperation shot over the top. “I said, ‘What is the worst muscular dystrophy?’” Ben says the doctor was silent for a moment. “‘This.’”
“This” was Duchenne muscular dystrophy, the most common form of the disease. It causes muscles in the body to become very weak. In little more than a decade, they can break down, replaced by fatty deposits. The illness leads to the inability to control vital muscles. There are few experimental treatments and there is no cure.
Duchenne usually is fatal in the teenage years. “Give me a break here,” Ben recalled thinking. “Everything is coming down, man.” His eyes welled up as he relived that moment. “The doctor quickly realized that my wife and I needed to be alone to deal with the whole thing. She left, and we emotionally just…” Ben paused. “We were confused. There were all these things that go into finding out something so devastating.”
It was over, yet just getting started. “This doctor came back in, and then she started telling us things we did not want to hear.” Like what? “She told us what would happen, like a wheelchair by age eleven, respirator by fifteen, succumbing by the age of eighteen. She wanted us to know the whole thing.”
The Cumbos were appalled by their specialist’s rush to painful predictions. In the next minutes, the couple backed away from the doctor with the dark crystal ball. “That doctor went to the Genghis Khan School of Medicine,” was all Big Ben will say about her.
Among the chronically ill and their families, complaints about doctors know no end. Physician as soothsayer is one of many outrages. We can only wonder how deeply these doctors care or even know about keeping hope alive.
“I think that the doctor was wrong to say those things,” I said to Big Ben.
“It is all related to bedside manner, if that is what it can be called. Luckily we had our friends at Children’s Hospital,” he replied. I wondered if he had expected better. “I did,” he said. “Then.”
The Cumbos moved on, finding a new, more empathic physician. “This doctor backed away from reducing the illness to inevitabilities. “He was optimistic. He said things like, ‘Yes, that could happen, but the statistics are changing daily.’” The ability to mix realism with hope is a precious skill.
BEN AND DEBI understood there would be a rough road ahead for their son and the entire family. They were determined, however, to lead young Ben into as normal a life as would be possible. They wanted him to reach out instead of giving in to illness. The Cumbos were determined that their son have dreams.
“He wanted to be a railroad conductor,” his dad remembered, “and then a pilot.” Dreaming allowed the young man to see a future, to be able to imagine in the midst of high emotion and confusion over where he might be headed. “Ben’s dreams allowed him to focus not just on what he could not do but on fantasies of what he might want to do. That was critical.” What the boy would reach for became more realistic through the years.
Ignoring grim possibilities was easier to accomplish in Ben’s early years, with the disease progressing slowly and Ben’s recognition following at the same pace. “I wanted to be a fireman or policeman, things like that,” said young Ben. “They were the normal things that every young boy would think about, say, between the ages of five and nine.”
Learning the diagnosis and understanding the problem were gradual. “I want to say I was five when it registered.”
“Were you surprised?”
“Not really. The information did not have much of an effect. I knew that I was different, but I did not grasp how devastating it would be.” By the time he began to feel the effects of the muscular dystrophy, Ben was old enough to understand. “Until then, I felt like an ordinary kid.”
Instinct suggests that early disclosure usually is the right call. Ben’s parents dispensed information about his illness gradually and in small doses, carefully assessing what their young son was ready to absorb. “There are levels of truth,” his dad said. “What we told Ben at five was different from what we said at ten or fifteen. At five, it was, you have a disease that affects your muscles. That is all.”
The boy’s parents did not know from one day to another where the disease would take their son. “In the beginning we said that anything bad would not happen for a long time,” Big Ben said. “It was kept vague and in the future.”
“We told him it was a progressive disease,” Debi remembered, “but the doctors said he was doing well.”
The difficulty explaining an uncertain future to a child is obvious. Ambiguity can be unacceptable to a kid. As a young adult, I found it hard enough to get a handle on MS when no one could tell me where it was heading. The long-term prognosis was dark, but the Cumbos hoped for some light. “We just decided to take each day as it came,” Debi explained. Young Ben’s eyes opened slowly as the severity of the disease became apparent. As he reached second or third grade, his legs began to weaken. He was tiring easily, though he was still able to get around on his own. The sinister signs of his illness were kicking in.
Young Ben described emotions with characteristic understatement. “I did not react in a positive way,” he said ruefully. “I was upset.” As always, he offered a perspective that was surprising for his years. “It was not physically as difficult as it is now.”
When Ben was still walking and independently mobile, he could sense only vaguely what lay ahead. “At times, I thought about the future, but not all the time.” His even keel may have floated on the easy denial of a child. “I pushed away reality, like probably all children do. I chose not to deal with things that made me worry.”
Although his parents were pushing for normalcy, they understood that integrating illness into his identity was the next step. Big Ben and Debi intended for young Ben to see his disease as a piece of himself and to make him as comfortable with his illness as possible.
Young Ben was introduced to advocacy work when he was eight, learning at an early age the value of getting involved and meeting other young people with the same problem. The Cumbo family became active in the local chapter of the Muscular Dystrophy Association, doing volunteer work and participating in the local telethon. The Cumbos’ efforts to help other stricken kids drove home to Ben that he was not alone in this disease.
Ben was affable, impressing a Muscular Dystrophy Association representative. The boy became the Washington Goodwill Ambassador for MDA. “Ben understood what this was all about,” his dad said. “He was helping people.” At least that was the message Mom and Dad were trying to send. Then the Cumbos were approached by the national organization. The youngster was now under consideration to be national Goodwill Ambassador. MDA sent a camera crew to Maryland to videotape the Cumbos at home. The advocacy group dispatched the family to Boston to meet Jerry Lewis, the famous father of the mother of all telethons, where he was performing in a revival of Damn Yankees!
“Everything clicked,” Big Ben remembered. Young Ben was singled out as a national ambassador. The family appeared in cities around America. The honor empowered Ben and became a first step in his taking charge of who he was. “At that point, it was a fun experience,” said young Ben. “I was meeting people and going on television. Later, I knew it was more than that. I learned about going out of my way to help others and trying to change things.”
A few years later, young Ben found himself on Capitol Hill, testifying before a crowded Senate appropriations subcommittee hearing on health, chaired by Sen. Arlen Specter of Pennsylvania. Ben was the small boy at the large table, dwarfed by the tall microphones.
He was comfortable in the spotlight. “I am just a regular thirteen-year-old boy,” he told the senator, “just trying to get a girlfriend, listen to hip-hop. Do everything a thirteen-year-old boy would regularly do.” Then the young man got serious. “I am extremely lucky, and God has blessed me because there are people who are a heck of a lot worse than I am.”
Then the ball sailed over the fence. “If the government could spend two billion dollars on one plane,” he said, referring to the B-1 Bomber, “a hundred million on research would not hurt.” That line, no doubt supplied and rehearsed, brought down the house. Young Ben was learning to deal with an adult world.
Ben was not going to become a professional victim. His parents were adamant about that. “I do not look down on people who make that choice,” Big Ben said, “but I recognize there is a very thin line here that people deal with on a regular basis. We simply did not go there.”
Young Ben was emerging with a strong sense of self that embraced his disease. “Keep your friends close,” the Godfather warned, “your enemies closer.” Muscular dystrophy was the enemy, but Ben was tacitly agreeing to live with it.
THE CUMBOS WERE careful not to make their other kids casualties, either. Young Ben’s elevated public profile caused no conflict with his sisters. I sat with Tyler and asked if her brother had a corner on attention. “They would call Ben up and give him all this stuff,” Tyler said, “but I never saw that as him being treated better than me.” This pretty young woman was at ease. “Getting involved meant a lot to all of us.”
Discipline was meted out impartially. When the siblings were young, all of them would get in trouble, including young Ben. Tyler laughed at the memory. “It was not like my dad would punish me but not him. Ben would get the same punishment, you know, no computer, no telephone. We were not treated differently.”
There is a clear culture of success in the Cumbo family, and no one was exempt from great expectations. The kids were pushed to do their best. Tyler excelled in basketball, young Ben in writing. And they were supportive of each other. “Ben was at every single basketball game, just cheering,” Tyler said. “I don’t think it ever affected Ben in a way where he was like, ‘Gosh, I wish I could do that.’”
Tyler wore a thoughtful look. “Ben was excelling in writing all these different stories and all that stuff. I wish I could be a writer, just like him.”
“Do you think it bothered Ben that you were so good at things he could not do physically?”
“I think it probably helped him a lot more because he saw me excelling in basketball.” Her success pushed and inspired him.
“Absent Ben’s illness, we would have had the same expectations,” said Ben’s father. “With the disease, that is even more the case.” Why? “The alternative is not consistent with what we have always told any of them, to remove obstacles and make a difference.”
If the Cumbos were intent on treating Ben as normal so he would regard himself the same way, neighborhood kids were not necessarily on the same wavelength. It is no secret that kids can be cruel to one another, often unintentionally.
“Remarks that other children would make drove home the point that I am not necessarily normal, at least the way they are,” Ben admitted. “‘Why can’t you walk fast?’ ‘Why do you walk so funny?’ or ‘How come it takes you a long time to get up?’” Ben described the remarks as frequent and hurtful.
“Of course, those were the innocent observations of little kids.”
“Probably,” Ben answered. Still, he felt emotionally bruised. “People probably do that because they do not know, but I started to be like, okay, this really does hurt, and this is something that I want to go away.”
Ben’s parents could not help. “I would not necessarily say they prepared me. I kind of prepared myself. We talked several times about why certain people act a certain way, but it was ultimately up to me.”
Ben said that at times his fears would subside, but the worst fears became his emotional Achilles’ heel. As the boy became a young man, he became obsessed with the judgments of his peers. His fear of others became his demon, coinciding with the realization that his physical problems would amount to more than a bump in the road. “I learned that this thing was something that I would have to deal with longer than I had expected.”
“What do you mean, longer?”
Silence echoed for a moment. “Longer means the rest of my life.”
In a state of serious sickness, acceptance of a limited life can arrive in a slow drip, especially when we are young. At first we resist any knowledge of our limitations. Then, little by little, we let the truth in, particularly when the insensitivities of others are thrown at our feet. Says Ben, “I guess gradually I began to accept it and be, like, okay, I am not going to be able to do what I thought I was going to do as a little boy.”
YOUNG BEN ATTENDED Bishop McNamara High, a parochial school with a predominantly black student body. The Cumbos are Methodists but thought the school would offer their son a better education than the local public school. I spent a long morning at Bishop McNamara during Ben’s senior year, hovering around students and attending classes.
We ate a lovely institutional lunch that day, French fries and more French fries. For me, this was a trip down Memory Lane, consuming what passes for a meal in a noisy school cafeteria. This time, I just watched. Ben seemed to let go of his customary serious demeanor, chatting away, even shouting along with the others. For the moment, he blended in, just another kid.
Akili and Glenn sat close to him, bookends supporting each flank. The two were his confidants and buddies, the guys who got Ben to come out of the house and lead a life apart from his family.
Virtually every face around the table in that lunchroom was black. The kids’ easy camaraderie was obvious. Ben let down his guard to belong. In sitting position, legs under the table edge, he became just a member of the club. The festivities ended with the bell, and students returned to more serious pursuits.
Ben’s ambitions had ratcheted up as high school was winding down. The young man was determined to be a writer. “A very successful writer,” he said, clarifying the plan. And a famous one. “I want to be known by a lot of people as that screenwriter who is young, maybe twenty-five years old.”
Success as a writer would provide affirmation that he was a whole person.
“Yes,” the young man agreed. “It means that after bumping heads, I have cracked through. It means I am winning the war.”
“Who are you at war against?”
“This war is not with other people, but the fight against the demons within myself.” He went on. “I am fighting anger and self-doubt, spawned within myself and magnified by disability.” Who writes this kid’s lines? Above all, it was clear that Ben needed to believe in himself.
For years, Ben had been writing short stories, most of them built on military themes. He seemed to be taken with combat and strategies, men overcoming obstacles while operating under great pressure. His fiction seemed a metaphor for his life, an idealized snapshot of the kind of man he longed to be.
“If Ben were one hundred percent healthy, he would be in the military,” Debi had told me. “That is his concept of being a man.” What this mother cannot know is if her son is glorifying what he knows he can never be. “Exactly,” Big Ben said. “Exactly. I say to him, son, you write in a context that is romantic and has a movie flavor to it, but that is not real life.”
The real world may not be where young Ben chooses to hang out. “Escapism” is not necessarily a dirty word. What does Ben gain from embracing reality? Ben’s parents were wary of his need to escape. I asked them what their son gets from reality. “Depression,” they answered in unison. “If you look at it hard, you might ask, ‘Why bother?’” Debi added. “‘Why get up?’ ‘Why go to school?’ ‘Why do anything?’”
“Are there answers to those questions?”
“Yes. That kind of existence is unacceptable. You have to keep going.”
Ben did keep going with his writing, expanding his themes and developing ideas that went beyond military heroes saving America. With high school graduation and college approaching, he worried about losing old friendships and facing the challenge of the future alone. For him, the subject inspired a work of fiction, King Me. Loosely based on his life, the book sounded his concerns as he prepared to leave the safe place he called home. King Me tells the story of close friends going out into the world, trying to do well by doing good.
The book has four principal male characters. Three bear the names of Ben’s closest friends: Akili, Glenn, and Thomas. The fourth is fictional, based on the author’s view of himself. The four band together in a group called The Disciples, who dedicate themselves to solving life’s toughest social problems. The young men devote their labors to ethical dilemmas and sorting out religious conflicts. The heartaches associated with disability win their attention. The four vow fealty and go into the world, though they continue to meet annually, presumably a scenario of great comfort to the author.
Each of the disciples forms an organization. Akili’s organization, The Core of Joy, is the linchpin of the group’s shared social conscience and reflects Ben’s personal concerns. The Core is a support group that takes up the large challenge of helping people who suffer from disabling diseases.
Disability is Ben’s curse, yet in his book he made it Akili’s cause. Would it have been difficult to make the story more autobiographical? “It would have been tough. Maybe taking it on myself would have been therapeutic.” Ben sounds as if he was not interested in the role of single-minded advocate.
The fictional organization he created presents advocacy as Ben thinks it should be practiced in an ideal world. “I wanted to show that there are ways to make life better, even for the disabled. Yeah,” he said slowly, “I have a duty to talk about this stuff, for myself and for others.”
King Me, Ben’s elaborate dream, works on paper. “I know I have created the polished look of what four young and successful African American guys want to be. Definitely,” he said. Ben is well aware of the difference between fiction and nonfiction. “It may not be exact, but to be successful is the key to life.”
As King Me makes clear, Ben’s creativity and drive for success are unusual for someone his age. But the idea that his imagination has been hard at work is not surprising for someone whose body is failing. There undoubtedly is a correlation between loss of the purely physical and the ascent of the mind. Taking up residence in the mind is common among the disabled. There, we are free. We can explore and go places our bodies cannot carry us.
That transference is Ben’s story. The mind picks up where the body leaves off. “Definitely,” Ben said enthusiastically. His voice was animated. “I know what you mean. If one sense is taken away, others are heightened. That is beginning to happen to me.”
Erin and I were talking about her younger brother over coffee in Washington. The bright-eyed young woman believes that Ben does compensate well. “I think that people who have physical disabilities have other gifts in other areas. I have seen that in Ben.”
That observation marinated over time as siblings watched one another and matured together. “I am not physically blessed,” Ben said. “When I look back at situations that were hard to overcome, I realize that in the end, I win out in different ways that take time to see.”
Debi and Big Ben created their own publishing imprint to put out King Me. The book finally was published during Ben’s freshman year at college. Afterward the couple decided to broaden their horizon to look at the work of other young African American writers.
At a reception for the new author at a local inn near the Cumbo home, friends and relatives were joined by college officials and even local politicians to honor Ben. The Cumbos were well known in the community for their advocacy work.
There was an aw shucks quality to young Ben’s public face as guests sang his praises that afternoon. The contrast between craving a following and pushing away the attention was apparent. In his head he had needed affirmation from others for so long. When it came, he shrugged. “I guess it is not so important.”
Ben’s smile did not waver, though, the sole signal of satisfaction he allowed himself.
AT ST. MARY’S on a snowy day, I watched in wonder as Ben tripped the light fantastic in his motorized wheelchair. He rolled through Kent Hall, pushing buttons to open automatic doors and moving decisively, gliding backward and forward. Then he nonchalantly set out to cross the campus.
Ben had located the paths to avoid, scoping out the hazards, the holes and curbs he could not climb. He had identified shortcuts and knew precisely where to slide past parked cars and when to take the long way around. This was a survival game and he was intent on winning.
We started down a steep stretch toward the bottom of the hill. As we approached the main road that cut across campus, I imagined what disaster could await. Ben could find himself slipping and sliding into fast-moving traffic. “You okay?” I asked. Ben shook his head and laughed, as if danger were his business.
Winter in a wheelchair is no laughing matter, a lesson Ben already had learned the hard way. Weeks earlier, he had been hungry, heading off alone for the campus store. “There was a lot of ice on the ground, and that made it treacherous.” And the slow slide down a long hill began. “I thought, ‘Oh, my God. What have I done now?’”
He remembered the helpless feeling as the chair lost traction and away he went. “What went through your head?” “Don’t panic yet. Hope the chair just stops.” It did. The lesson? “Do not go out in the snow,” he answered sheepishly. Like I said, this is a game of survival.
Ben lives a life of anticipating trouble and plotting to avoid whatever disaster lurks. “You’ve got to be extra careful. In my head, I am the same as everyone else, but there is a lot more to think about with physical stuff.”
Ben’s parents thought about his physical needs early on. They bought a traditional ranch house with no steps just one year after the diagnosis. When a disability is present or foreseeable, planning is essential, and the Cumbos wasted no time. The house was easy for Ben to navigate. He grew up on his feet and remained standing until his mid-teens, exceeding the expectations of his doctors.
When he was in high school, his legs began to seriously weaken. At sixteen, they finally failed, decimated by the disease and the aftermath of a devastating auto accident. Young Ben was a passenger in a car driven by his grandmother. A collision took her life and left her grandson unconscious. “It was tragic,” Ben’s dad said about the loss of his mother and his son’s injuries. “We all believe that Ben deteriorated on his left side and was never the same.”
His son agrees. “I guess that not using my body after the accident made the disease worse.” The arrival of the chair came quickly after that. “Yeah. That accident did put me in the chair earlier. I believe that.” The transition was tough. If young Ben appreciated inevitability, that made it no easier.
“Initially, I resisted,” Ben admitted quietly. “There was a big old pride issue. I did not want to admit I needed help. But I could not walk anymore.” And there was one more powerful incentive I totally understood. “I did not want to risk being even more embarrassed by falling all the time.”
A comfortable, slightly worn chair replaced Ben’s legs. A motorized chair moved him around, even as his peers were taking driving tests and moving to the driver’s seats of automobiles. If a new car is a point of pride in our culture, the wheelchair is a signal of weakness in a society that celebrates physical perfection.
The irony is that though to the public at large the wheelchair is a symbol of dependence, for the disabled, the rolling seat, in fact, is the opposite, an instrument of freedom. Ben had lost his legs. The high-wire act had to do with reconciling his loss with the freedom he gained.
“It was tough. I am not going to lie. I was worried about what people would say,” he said. He wondered how he would be treated. His nervousness was predictable. Long ago, a young man in a wheelchair had complained bitterly in a PBS documentary I helped produce that people only see the chair, not the man in it.
“Do you ever feel ignored as a person?” I asked Ben.
“If they have gotten to know me, hopefully they say, ‘Okay, this guy is cool. He is not a chair, he is a person,’” Ben said, sounding surprisingly casual. “‘He is not a part of some piece of machinery. He is an actual human being that has thoughts and dreams and goals and stuff that he has set for himself. So why bother disrespecting him?’”
Ben’s fear was overstated but would not go away. “The effect was nowhere near as detrimental as I thought, because people automatically were, like, more sympathetic and stuff, like, ‘Oh, he’s serious with this. He has a physical problem.’ I guess most people thought, ‘Okay, we need to help this guy out,’ and I think most people that I knew adapted to that.”
The young man was learning to take his finger off the trigger. “I guess I changed people’s attitudes toward me.” Ben began to regard others with less suspicion. “I learned that nobody is out to get me.” And? “I realized there is always someone around who has it worse.” Amen to that, brother, a coping device straight out of my arsenal.
“There are deaf and blind people out there. I learned to count my blessings.”
“You learned that pretty quickly,” I pointed out.
“It was a crash course. I was forced to change, to ask for help. It was bound to happen.”
Asking for help is not so easy, especially for those of the male persuasion. There is a tension between coveted independence and the willingness to reach out and say, Please.
BEN IS OUT in the world now and on his own. Life in a chair means that he has to rely on others. Only when he goes home does he know the security of a place he has mastered. One autumn afternoon, I walked through the family house trailing him.
The guy made his way in the chair from the bedroom, through a hall, past the living room, and into the kitchen. Obstacles were passed at close range and with ease, corners and doorways negotiated gracefully. For all the mobility and freedom a chair can offer, life without the use of lower limbs is fraught with difficulty.
Finding his way into the wheelchair each morning requires upper body strength and agility. Lying prone in his bed, Ben must stretch his arms up and out to reach a horizontal trapeze bar over his head. He pulls his torso and limbs to an upright position. “Since I cannot get up from a sitting position, I basically rely on that mechanism to help me up.”
Ben must go up and out. “I swing from my bed to the wheelchair and get to the restroom or to the shower and back again.” He sees the lift in calm, commonsense terms. “It is something that I very much need, because there is still some degree of independence for me. I am capable.”
The system, though laborious, works easily enough when the chair is properly positioned next to the bed. One day, Ben’s parents had left early for work, his sister Tyler for the gym. Each had neglected the regular check to establish that the chair, in fact, was in place for Ben’s morning acrobatics. No chair, no chance. Ben awoke in an empty house to find the chair out of position.
He calmly stretched and reached up for the bar on the lift. With one arm grasping tightly to the bar, he slowly lowered himself to rest his knees on the floor. Then he swung toward the motorized chair. He was able to activate his machine and guide it toward the bed. He then used the lift to return to bed and begin his maneuvers again, this time the right way.
“You must have felt like a baby trapped in the crib.”
“No,” Ben answered immediately. His hard tone told me that my observation was off or at least uncomfortable. “I did not look at it like that. I had the lift positioned next to the bed and knew what to do. I was going to deal with it,” he said, adding, “No big thing.”
Ben will not admit weakness or vulnerability. He paused. “I am not suppressing anything. I was just taking care of business. My mind goes into the go mode. It just takes some ingenuity.”
There are reprieves from the wheelchair. Ben goes vertical when getting into or out of cars. The young man is lifted, arms under his shoulders and hoisted by the strong backs of Mom or Dad or close friends. Observing the ritual of Ben being moved into and out of the family van took my breath away.
His legs were swinging and swaying, moving from side to side like a pendulum or just dangling like a rag doll. I worried that two generations of Cumbos were going to go flying, but the precarious look of the maneuver was deceiving.
The Cumbos are used to this high-wire act with no net. Ben rides shotgun, next to his mother. I realized the young man was seeing his world from the same high perch as anyone riding in a van, a welcome change for a guy in a chair.
I wondered if Ben ever forgets that he is sick. “Yes,” he replied without hesitation. “There are times I do not think about the wheelchair. Sometimes, I am just one of the guys.” Does that feeling of liberation last? “Not really,” he said with no apparent emotion. “Enjoy the moment, I tell myself. It cannot be maintained.”
BEN’S COMFORT ZONE in his African American world vanished when he left his community for a predominantly white college. “It was a blessing and a burden,” he said. “I am getting a picture of the real world now.” There was a brief pause. “I feel intimidated.”
He claims the experience is forcing him to shed labels and open his mind. “After a while, I become just a student.” You mean, as opposed to a black student? “That’s right. People help each other and gain from it. Maybe it does not matter so much.”
I wondered how this young student sees himself. “Ben, you are male, black, disabled. As you define yourself, in what order do you place them?”
He paused and answered firmly. “I would have to put disability first.” He started to say black was next but corrected himself. “Male would be second,” he said instead, “then, African American.” African Americans are about 20 percent of the student body at St. Mary’s. “Yes, and that is disappointing. But there are only two students with muscular dystrophy.”
Ben might have veered to his racial identity. He was a proud young black man. That he chose disability as first was a small surprise.
“What do you think Ben’s order was?” I asked Big Ben.
“African American first,” he answered without hesitation.
I met Ben’s sister Erin at a coffee shop in the Adams Morgan neighborhood in Washington and asked the same question. “He said African American. I am sure Ben said that first.” Erin laughed, smelling a trap.
“No,” I told her. “That is what your Dad guessed.”
“Really?”
“Yup. So did Tyler, who thought that being black would trump the others.”
That the family missed Ben’s reasoning points up why we, the disabled, can feel so alone. “Disability is the most standout feature of my life,” Ben had said firmly. Disability dominates the mirror. The physical problems become what we see. Our imperfections take over who we come to believe we are. Limitations loom large. Even our loving families do not get that. They see what they choose or need to take in and process.
The Cumbos have been processing sickness at close range for close to two decades. The senior Cumbos are role models for families dealing with chronic illness. They have learned to go with the flow and adapt to all contingencies on a daily basis. That attitude has served them well as a coping mechanism.
“I feel that I do not get by,” Big Ben had told me when his son was in high school. “I get through. My job is to find a way to get through a day.” A pause followed as the man collected himself. “Getting through is for him and the others.” Big Ben said he had routines and rituals to try to make his peace with young Ben’s disease.
With his son at home, his father would wander down the hall to Ben’s bedroom. “I go to him. He may be in his room, at his computer. Sometimes I just lie down in his bed.” Ben described a quiet connection to his namesake.
“What do you get from being with him like that?” I asked.
“I find solace. Somehow. We are together.” I wondered if that intensified the terror of a young life threatened by disease. “My deepest fear is him preceding me in death.” He is haunted by that very real possibility. “These moments with him ground me. I am more together. And I feel less anxiety about, ‘Is this going to be the day?’”
Big Ben manages to get past that question. “On a couple of levels, faith controls all in our lives,” he said. “We learned to pray and reach out. We felt we had to maintain a true relationship to God. ‘Please do not put our son through this,’ we prayed. We wanted the doctors to be wrong.”
In a video prepared a decade ago by the Muscular Dystrophy Association, Debi described the crushing blow to the family that came at her son’s diagnosis. “The thought of somebody telling you that you are going to lose your son when he is just getting into adulthood and you see just all of your dreams and hopes taken away from you…” she trailed off as the camera kept running.
Her husband picked up the narrative on the video, offering an emotional description of what his family had endured in those early hard times. “It required a lot of searching in our souls, a lot of restructuring in our lives,” he said simply. “It was difficult, but we made it through that period.”
With tears in his eyes, a younger Big Ben went on to explain how the family had survived the crisis. “We made it through the strength of our faith, our belief in God. We gave that task to God. And he has taken it for us.”
I told Big Ben about Buzz in Indiana and how strong his faith is. “Buzz’s relationship with God is his life,” I said, “and he is very open about that.” I pointed out to Ben that I had not heard him mention faith the same way. Ever.
“I consider faith to be very personal. I keep it to myself because I do not know how others will hear it from me.” Perhaps he was sensing my different attitude about the role of religion in recovery. Unlike Buzz, Big Ben seems to see faith as a piece of his life, not life itself.
Young Ben had told me he believes in God but eschews organized religion. But is faith an important piece of coping? “When you are sick, you do feel like you are by yourself.” The young man seemed to be searching for an answer here. “Religion does not have a lot to do with it,” he said.
“I pray, but sometimes I just leave it alone.” I said to Ben that it sounded like praying was just to cover his bases. “I can pray all I want, but I do not believe it will translate to anything.” Again, there was that pause. “It goes back and forth for me.”
“When I was sick, especially with cancer, and at my wit’s end, I would scoff at religion. What has God ever done for me? I would demand in anger.”
“Yeah,” young Ben agreed. “Sometimes I get mad at God, but then I don’t think I should. At that point, I rely on faith and think about how bad others have it.”
Young Ben seems to be walking both sides of the street here, full of doubt but playing it safe. Unlike his father who lives by hope and seems to believe that doctors will find answers in time to spare his son’s life, young Ben’s agenda seems secular and pragmatic. He will take things as they come and figure things out for himself. He also acknowledges a dark side that carries him in the opposite direction.
“I am not the happiest person in the world, but I still try to do the things I have always done. I believe that it is better to be upset and angry and do something, as opposed to being upset and angry at yourself and doing nothing.” Ben’s anger at himself sounded close to the self-loathing I experience when I fail at a physical task. My fault, I feel.
This certainly did not sound like acceptance. “No, it does not.” And too frequently, Ben does not sound like a happy guy. Punishing ourselves for our physical flaws is an unfortunate side effect of having a disability.
Negotiating life’s logistics long ago replaced dancing with the furies for the older Cumbos. For years, young Ben’s everyday needs forced his family to anticipate and plan each day. But the time came for Ben to leave home, and the family was ready, even Ben. “Actually, I was scared as hell, but it was time,” he said. Ben did not know anybody at St. Mary’s College and knew that he would have to reestablish himself and work hard to feel as though he belonged.
“You can take care of yourself,” I had told him before he left home. “You know that.”
“It is important for Ben to see that,” his dad had added, as the three of us sat in their living room one afternoon after Ben’s high school graduation. “It will be no big thing,” young Ben commented rather dismissively. He did not want to hear the lecture.
Still, departure would include high drama. Getting Benjamin Cumbo IV out of the house and off on his marvelous journey, building the future his doctors had suggested might not come, was only the beginning. Ben and Debi paused, at least momentarily, in satisfaction.
“We helped Ben navigate the waters. He has self-confidence and wants to live a normal, full life.” That belief in himself would have to stick. “On good days, it is there,” Dad said. The not-so-good moments would tell the tale.
Mom had her own issues and emotions. “Fear,” she laughed uneasily. “There is a lot of fear involved.” Whose? “Mine,” Debi giggled. “Looking at him, knowing what it takes for him to navigate day to day, I worry,” she admitted.
The self-confidence of a vulnerable guy would be measured first by a new routine. “Ben will have to go to the bathroom in the middle of the night. He might be alone and incapacitated.” Then she cut to the chase. “I have a fear of humiliation for him. He has a ton of pride. To see him in a situation where he cannot help himself is what keeps me awake at night.”
That was the shared fear that haunted mother and son. Debi was not afraid for Ben’s life. “The threat is the little things that able-bodied people just take for granted.” Those common crises could drop this young man in his tracks.
That warning became real during Ben’s first semester at college. The college owned several townhouses that sat at a distance off the busy main road. These fancier digs were in demand among students and seemed to answer Ben’s physical needs. But instead of the communal living experience of the dorm, Ben found himself in a small, isolated house with unknown and, it turned out, unreliable roommates.
Ben swallowed hard and told himself he was ready to reach out. “I probably will need to ask my roommates and other people if they can assist me with things,” he had said before leaving for college. “I guess once I get to know other people for a day, that will be all the trust I basically need, in a sense, to think, Okay, this person seems cool enough for me. They do not seem upset or anything, so I can basically ask them for help anytime.”
Then came the ambush. Ben’s roommates were loud, disruptive, and ready to party. He had long ago decided to steer clear of alcohol because of his 24/7 need to keep his wits at close range. On one night, his roommates returned to the house from a night of partying. “They were drunk, really drunk,” Ben recalled. They were raucous, the noise continuing until, one by one, they fell asleep.
Ben needed help getting on and off the toilet. Someone helped him that night for the ascent but he was abandoned for the descent. “I called out and waited. Finally, I gave up and crawled across the floor and into my room.” There he lay, unable to get into bed without help.
“Ben called me. It must have been two or three in the morning,” his dad said. “I tried calling the townhouse from my cell phone and got no answer. I was about to get into the car and drive for more than an hour down to the school just to get Ben into bed. I was upset for him.” The young man called again. “No, Dad,” Ben insisted. “I will just reach up and pull down a blanket and pillow, and I can sleep on the floor.”
That was it. Young Ben had crossed the Rubicon. “I had decided, ‘Enough.’ In the bathroom, I thought, This is the last straw. I am not going to deal with this anymore.” He went to the St. Mary’s administration to ask for new roommates.
“There could have been a fire,” Ben’s father said. “These guys might not have heard the alarm and helped Ben out of there.” The school officials acknowledged that they were not watching closely enough.
The Cumbos hired a health care professional to come to Ben’s room each morning to help him bathe and dress. That a stranger would be doing for him what his Mom and Dad had done for his entire life bothered him terribly until he got used to it.
“Think of her the way you would a doctor,” Dad had counseled. “There is no reason to be self-conscious.”
The routine was as it had been at home. “I wake up, and the first thing I do is change. Then the ritual every morning is I put my braces on and then I have to put my pants on over that and my shoes.” Ben could not complete that last phase of dressing alone.
Ben possesses the ability to see through himself and, however long it has taken, to deal with his own foibles. “In these situations, pride can get the best of you, to the point where you hurt yourself,” he said quietly. “It takes a bigger man to admit that he needs help than to say he does not.”
In dealing with the regular melodrama of my own life, occasionally I indulge in the internal scream. Wait a minute, I shriek to myself. This is not how I want to live. Come on, this is not my life. Yeah, right. That lament How did this happen to me? is usually triggered by the small stuff that suddenly looms large.
“Do you ever ask that question?”
“Yes.” Ben chuckled. “You are right. It is the insignificant things that make you want to scream out sometimes.” We can wonder, but to no avail. “I wonder, but that does not give me an answer, so I do not think about it.” Case closed.
Ben’s ability to shut off debate, to silence the critic in his head, has to be useful. Those dark decrees can overpower the rational voice. They take you nowhere. The discipline and personal strength necessary to control the raging inferno in his head puts him more in control of himself. For him, as perhaps for so many, this sort of silencing is a defense mechanism, necessary to protect against not just unexpected events but his own emotions.
Planning for the failures of others, such as roommates, seems a tedious task. “I control myself and get irritated because I expect people to be grown up when they act like children.” Ben has no time for that. “Self-reliance is standing up,” he says emphatically.
MORE THAN ANYTHING, Ben needs to feel normal. A critical piece of that normalcy to him seems to be some serious, yet undefined relationship with a young woman. For a long time he has wanted to take those first steps. Just to talk. To sit together. To share.
So much of his anxiety about meeting and getting to know members of the opposite sex stemmed from his xenophobia, the unshakable fear of others. Old fears die slowly. He was skittish about the rejection he expected would come.
“If I were to try to talk to a girl, I guess, I would think, Okay, she is not going to want to talk to me at all,” he said gloomily. Not at all? “Maybe she is going to wonder what I am doing, trying to speak to her. It’s stuff like that.” His darkly pessimistic scenario took on a life of its own. “I can imagine, like, hundreds of people laughing at me if I try to say something.” This fear of humiliation almost bordered on paranoia.
Erin said she had offered consistent advice to her brother about meeting members of the opposite sex. “‘Get girls to be your friend,’ I tell him. ‘Stop looking at them like you have to holler at a girl all the time.’” Erin looked disapproving. “That is what his friends are doing,” she added. “Those guys are making themselves look like idiots.”
Ben’s flirtation with black street culture, which he seemed to know little about, instructed him that coarse is cool. “That is not Ben,” his father chuckled. “He has to find that out for himself.”
Tyler had helped her older brother sort out the issue of relationships, which, of course, is a high priority for any teenager. She pointed out that she is closer in age to her brother than is Erin, and the two were able to compare notes on their social lives. “He is always asking me for advice, like, ‘Should I call her? Should I instant-message her?’ I tell him, ‘Just be yourself. That is what people like about you.’”
For any teenager, the stakes are high. For a disabled teenager, the risks shoot through the roof. “For me, the risk is rejection and how I will feel after I meet someone.” Ben admitted his tendency to hang back. “Yeah. I am always hesitant to try to talk to girls,” he explained. He, or anybody in the sitting position and looking for a standup companion, could speak of growing self-confidence or pride. Still, the plaintive cry was sounded.
“What is a poor guy like me doing, trying to meet girls?” Then the self-recrimination began. “I am not normal. Not everybody is going to want to be with me.”
“How do you know?”
“I just do. People have no idea what it is like to be in wheelchair.” And he assumes the worst. “I will never know if my failures are because I am disabled or just bad at talking.”
Girls, the hope goes, will see something in this young man whom they admire and will give him a shot. “People who know me or my sisters will give me a fair chance. But I will say that a disabled guy is not for everybody.” You have to keep trying. “There has to be some physical attraction for them. I don’t know,” he trailed off.
BEN ROLLED INTO the kitchen in his reassigned digs. New roommates wandered in and out. Ben came across as the loner. Intense seriousness separates him from his peers. He is on a mission to make a life. He will not be stopped. In that darkened suite on campus, his nose stayed in a book. “Eventually, I will come to terms with my situation and accept.”
He has a long way to go before he can say he has learned to accept. Maybe resignation more than acceptance is where young Ben’s emotions take him. As he says, “This is my life, and it may be unfortunate, but this is what I have to put up with. The only option I really have is to live with it.”
He continued to frame the struggle according to his fears and his dealings with others. He works to put that fear of others to rest. “People are not always going to be nice to you, but I also started to realize that people are inherently good. Not everybody is out there to get me.” I wasn’t always sure that he believed his own words.
Older sister Erin believes that Ben will find it hard to change, that his negative thoughts cloud his judgment. “It is almost like Ben thinks he can hear people thinking about him, and that is just not true.” Erin worries about her brother. “He has got these voices telling him what is going on.” Those voices instruct Ben to watch out.
Erin’s growing optimism about her new career as an urban planner is tempered by fears for her brother’s future. “I pray that Ben just continues to grow,” she said, “that nothing happens that is going to paralyze him so he does not want to go any further.”
Ben struggles to control a shotgun distrust that sprays wide. That abiding suspicion of others has seemed to block his path to a relationship. “I think Ben is trying to prepare himself by assuming that when he gets into a situation, he is going to be hurt by it,” Erin observed. “I say, ‘When a person meets you, they can tell right away. You are just a nice guy to talk to.’”
Ben creates his own isolation, and then suffers from it. “Being alone is something I can deal with,” Ben said as he pondered a solo future. We were alone in his darkened room at school. Ben turns his frustration away from muscular dystrophy and projects it on to others. That way people, not the disease, become the enemy. “I am angry, I guess. I’m sad.” And worse, he feels humiliated. He has turned this humiliation on himself. “I am known to see myself as a loser, somebody who is unwanted.” He is setting himself up to be alone.
Late one night, Ben called his sister Erin after returning to his townhouse from a mixer. In full frustration, the young man described the view from his wheelchair. “I am down here. Everyone else is standing up. They are talking about something up there, and I don’t know what they are talking about,” he recounted to his sister.
As Erin described it, Ben was beside himself. “I told him, ‘Well, I am sure there are people who are sitting down. Not everyone is standing up. Not everyone is on the dance floor.’” Fear of someone standing, the dominant position, is an animal instinct.
A troubled mind frequently accompanies the battered body. Erin could feel her brother’s emotional pain and wanted desperately to help him. “I said you have to figure out what is fun for you to do at a party.” Erin believed her brother painted an unrealistic picture of parties in his head.
“I don’t always dance when I am at a party,” Erin said with her own frustration. “Sometimes, I am bored, hanging around and socializing. Ben sees the people who are sitting down as being the losers,” she said. “He just categorizes everybody in the room as soon as he comes in.”
Ben draws little comfort from the support around him, those who assure him he is not a loser. More than a few years into our relationship, I knew he was anything but. “People tell me constantly that it just is not the case,” Ben agreed. Those reassuring words are not persuasive to him, however, and his dim view of himself can become a self-fulfilling prophecy.
Ben, in our many conversations, did seem determined to be unhappy. He cheerfully agreed that self-directed anger contributed to a pattern of low self-esteem. “Yeah. I get totally down on myself. I will admit I still do that, right up to now.” On some level, we all succumb to self-slander, but some control it better than others.
“Maybe this is a matter of karma, guilt for sins of a former life.”
“You are not serious.”
“I am learning about reincarnation. It just might be.”
“You got screwed, plain and simple,” I said. “Get angry and get over it. Light the fire and let it burn through. You will feel better.”
Ben applies what to me is a strange variation on the theme. “I have a weird philosophy,” the young man said, “and I will sometimes beat myself up so that I will keep myself grounded, so I don’t become too cocky and piss people off, I guess.” That sounds like beating your head against a wall because it feels so good to stop.
Self-directed anger is another story. Turning the flame-thrower on yourself will burn a person beyond recognition. Facing the anger and acknowledging the humiliation that is the trigger can be painful for any suffering soul, perhaps an impossibility for a teenager. When my own humiliation grows intense, when I trip, stumble, and fall and there is nowhere to go with it, I, too, can turn fire on myself in frustration. Then I get over it, a clean burn. But Ben is too afraid of his anger to do anything but direct it against himself.
We were making our way across campus. The gentle hill down toward the river was flecked with snow and littered with fallen branches. I thought that maybe the bucolic surroundings would provide calm and help Ben lighten up.
Instead, he retreated into his hole once again. “It’s just like Groundhog Day for the emotional stuff,” he said. He did hold high hopes that he would continue to grow and change. “Maybe I will just go, Okay, that is tough. Get back up again. It’s not so bad. You are still alive.” That showed resilience, but the young man could not get himself to hold on to that positive perspective for very long.
Ben knows that his long war is waged against himself. Along the way, he is often disappointed in others. “People may not have a clear idea of what my life is or care.”
“Do people owe it to you to care?”
“It does not hurt to know this stuff.” The automatic response to upset too often is to lay blame at the feet of the other guy.
This young man does know the main battleground lies north of his own neck. That is where he must make his peace.
Ben understands that he has paid a steep price for his social panic. “I look out for trouble so much that I miss out on stuff that is really important, such as actually talking to people and enjoying myself.” He recognized the dynamic even before finishing high school. Though his best intention is to grow, the pattern remains entrenched.
We had talked about this rut as students changed classes at Bishop McNamara. As usual, Ben was moving alone. He rolled with me next to him to the tiny lift that would get him to the second floor. This was not an elevator but a hydraulic lift, specially constructed for Ben’s use and installed in an empty space adjacent to the stairs.
We could not have traveled up that one floor together. The space on the lift was so confined that Ben alone would be making this short trip. Once again, he was pulled away from others, pushed into his own category. I watched him enter the lift, position the chair precisely. Back and forth he went, turning a little bit at a time.
The corridors were jammed with young people laughing and carousing, shouting their way to the next class. Ben was not part of that. He occasionally nodded to others but took his separate route, ever the solitary figure. He travels the road less taken because he must. The chair separates him from others. So does that fence he has constructed in his head. Don’t you feel lonely?
“Sometimes,” was all he would say about that on this day. I learned about another trauma visited on the Cumbo family, one that caused young Ben to feel less alone. After years of mysterious ailments, Debi was diagnosed with lupus, a serious autoimmune disease.
Lupus was one more family grenade to juggle. The Cumbos were maxing out. “We were losing control,” Debi said. “We went through a period of practically shouting, ‘Why us? Why now?’”
The challenge became how to turn the corner and leave high emotion behind. “You have to allow yourself to go through the other emotions to get over them,” she said. “Otherwise they fester. You have to cry and be angry and lash out.” That means you think anger can be constructive.
“Yeah, I tell Ben all the time to get angry,” she agreed. “But you cannot stay angry,” she added. Therein lies the trap. “Sometimes I hold the anger in because, deep down, I am afraid I will go over the edge and not be able to come back.”
Young Ben rode to the rescue. “Ben made me put my illness into perspective,” Debi said. “I figured, if a child can do it, so can I.” Then she went one step further, explaining that occasionally she switched roles with her son.
“Ben preached to me what I had preached for so long to him. ‘Things are not that bad.’ We talked a lot, and sometimes we cried together.” Debi chuckled now. “It was good to have that kind of soul mate.” Big Ben told me that his son had a strengthened sense of solidarity with his mom. “Now she had a disease, too. Ben was not alone.”
Helping Mom had been a mission for her son. Young Ben had put anger aside for the moment. Controlling, not extinguishing the flame is the key. When a prominent New York psychiatrist learned that I had endured two bouts of colon cancer as well as multiple sclerosis, his response was direct: “You must have been in a rage” was his immediate comment over coffee. Well, good morning, doctor. The man did not speculate about frustration or depression. This shrink just headed to rage. Do not pass Go. Do not collect two hundred dollars. “Are you still angry?” he inquired. Yup. Anger is not abnormal.
Calm, too, can become a coping mechanism. For Debi and Big Ben, pouring water on the emotional fires was a way of buying time to steady themselves. “I am trained as a defense analyst not to lose my head,” Big Ben explained. “I have learned to maintain control. That is how I find stability.” Debi, too, learned to look before leaping into the fray.
Emotion must be released, however. Debi had a keen sense of when the time was right, and would push her husband to let go. “My wife prods, and then it does come out.” Big Ben chuckled. “I weep, and we talk. We confess our fears to each other.”
At the close of his freshman year, Ben learned that because of his book, he had been selected as an Emerging Artist for 2006 by the sorority Delta Sigma Theta. He was recognized at American University in Washington before a large audience. I reminded him that he had said long ago he wanted to be taken seriously as a writer. “Isn’t that what is happening?”
“It seems that way,” he answered a bit self-consciously. “It is happening quicker than I ever dreamed.”
“Aren’t you proud?”
“I know I should give myself some credit,” he said almost grudgingly. “Maybe it is a mixture of pride and humility. I am a young African American male telling my story. Okay. I will say, I am proud.”
“Thanks,” I said back. “And I am proud of you.”
THE WALL AROUND Ben stands tall, shutting even his family out. “Ben can keep even us at a distance,” Debi said one evening. “Our son is very protective of his feelings.” Tyler, only a few years younger, rose to the challenge of breaking through. Sometimes siblings know the best angle of engagement.
Tyler’s effort came intuitively and was built on their long years together. “We always laughed together,” she said. “We cracked jokes. If we had not been that close growing up, then I don’t think we would be this close now. Now we talk every day on the Internet, or he calls just to talk to me.”
Tyler describes a typical conversation. “‘Ben, how do you feel?’ ‘Okay,’ he will say. ‘No, seriously, how do you really feel? What is going on?’ I just kept at it with Ben.”
Tyler laughed. “You have to really beat it out of him for him to tell you the truth. I think that is pretty normal, just the kind of person he is.” Tyler and I were talking in the empty gym at Holy Cross Academy in suburban Maryland outside Washington. The young woman played serious basketball in this cavernous space.
This was Tyler’s home court, her comfort zone. Tears flowed as she described her fierce desire to ease her brother’s burden. The young athlete spoke of endless assaults on his dignity. “I told my mom that I wish I could take some of his pain away, because I never know how he really feels. You never know his true pain.”
The hurt spread to the family as they watched Young Ben collapse into his wheelchair over time. “I know he is in pain when he cannot even help himself. You have to keep helping him all the time, knowing that he could not be alone.”
Yet Ben showed no fear of being alone. “Do you worry about maybe not marrying in the future?”
“Somehow I think that is how my life is going to be,” he told me. We were talking at the family house during a break from college. I flashed to a recent memory of Ben sitting alone in his wheelchair at the student center. He had looked like a lonely guy in a happy place, quietly eating supper as others in groups laughed and talked about their day.
“I may be a lonely person when I get older, because I am too scared to actually go outside my comfort zone and take a risk,” he added. His dad was well aware that his son never had the luxury of taking risks. “If I have a regret for him,” said Big Ben, “it is that he cannot take a chance, whether it is one that takes him to the edge of maybe changing his life or simply meeting a special person.”
“I know this much,” young Ben said. “Being alone is more sad than scary. If that is how it stays, I will be a really angry, bitter person, and who wants to be that for the rest of his life? Nobody does.” This kid was under twenty when he said that, already girding himself against aloneness, the condition he possibly most feared.
The downside of living in your head is that when you free your demons, reality becomes irrelevant. Fantasy and fear combine to push any of us down a slippery slope, carrying us away from the reasoned view. Then we have to find our way home.
Ben and I sat amid the din of the student center, eating something I have yet to identify. “Like all things, you have to go through the storm a bit,” Ben said almost casually. “I worry less and less because I am slowly learning not to be so pessimistic.”
He pointed to lessons learned. “No matter how bad things may seem at any time, I have to try to make them work and just see.” There came one more pause. “I can laugh at myself sometimes. I know. Things are not so bad. They can be pretty good.”
CHILDREN’S HOSPITAL SITS atop another hill, this one in northwest Washington, a short ride up North Capitol Street from Union Station. The large hospital is a kid-friendly refuge for sick children.
A wide sunny three-story atrium is filled with traditional-looking hot-air balloons. Everything is colored in pastels. A puppet show in the lobby was playing to a smattering of children who were moving through various examining rooms and treatment areas. They sat in wheelchairs and hobbled on crutches and seemed genuinely happy for the diversion.
I was escorted into the muscular dystrophy command center, as the medical folks thumbing through the charts called it. This visit felt overdue. Young Ben’s doctor walked into the area. She is an attractive, middle-aged woman with an infectious smile, animated and intense.
The doctor was born in Argentina. She lost no time in distancing herself from American medicine when the conversation turned to the quality of care. “A lot of the American way is with coldness, right?” She instantly won my vote. “It is as if I am going to treat you as a disease and not a person.” Keep going.
We ducked into a vacant examination room to talk. My questions regarded Ben’s or anyone’s chances for achieving longevity with muscular dystrophy. “By the time they are in their wheelchairs, before they are twenty, usually they are dead. That is the natural history of the disease,” the doctor said with obvious emotion.
She explained that early intervention with steroids was adding years to the lives of MD patients, that an additional ten to twenty years was not unusual. “Their respiratory function remains really good on the steroids, if you do not stop. So we have twenty-four-year-olds who have normal respiratory function. And there are people in their thirties who have jobs and lives with these steroids and other therapies. We have moved in the right direction with muscular dystrophy,” she said, “but not far enough.”
The doctor made plain that one’s years are numbered by this disease. Of course, even for the healthy, life begins its slow end at first breath. “Yes, but muscular dystrophy is cruel and takes a life much earlier.” She told me that losing young patients was increasingly difficult for her to endure. “I cannot go to funerals or viewings of my patients.”
The doctor was unyielding and unequivocal. “There are a lot of people who go [to funerals]. I never did go, and I will not. I know I should be there. I feel very guilty that I do not go. But I just cannot.” Suddenly I realized that the doctor was standing bolt upright, her back stiff and straight. “I do everything I can for them while they are here. I treat them aggressively. If they die, probably I will write a card or something.” The doctor stopped in mid-thought. She appeared pained by the subject. “I only do well helping them while they are still alive.” If death is a part of life, even the doctor, unable to heal her patient, searches for closure and struggles to find her own peace.
For this doctor, there is no such thing as acceptance. I asked Big Ben if he had accepted the situation. “Acceptance?” he threw back at me. He was almost challenging. “I think acceptance is a crock,” he said with power in his calm voice. “People accept at the last moments of their lives.” The man had thought this through. “We do not accept,” he emphasized. “We are a family built and sustained on hope. That is our mantra.”
Big Ben is too preoccupied with keeping his son going to entertain thoughts of acceptance. His strategic role with young Ben is to hold him on an even keel and keep hope going. “I cannot allow myself to get depressed along with him. I have to pump him up. That is critical.”
The whole issue of acceptance haunts the sick and those who love and care for them. But what does making peace with an illness, finding this mythical, magical acceptance, even mean?
If this sounds like a word game, it is not. “Peace” and “acceptance” become vague concepts thrown around without enough thought. For the religious, acceptance can mean affirming orthodoxy. Our fate is God’s will. I think of acceptance as giving in.
Of course we, the sick, accept a diagnosis. It is what it is, and we must move forward. Learning to focus on living is another matter. Ben understands at a very young age that he needs to determine the essence of who he is and where his dreams might take him. “I need to be able to focus on things that are real in life,” he said, “and look at what I am and where I might be going.”
This kid had guts. In the end, the whole Cumbo family demonstrates on a daily basis that they, too, have guts. They are living their lives to the fullest, keeping the faith and waiting for help. Debi sounded an optimistic note in that muscular dystrophy video a decade ago. “The doctors are working very hard to get this cure. They are so very close. One day soon, it is going to come.”
Still, hope cannot wash away fear and pain. There can be nothing more wrenching for any parent than helplessly watching a disease play out in a son or daughter of any age. “It is seeing a young person you love so much going through the emotional pain that you cannot take away or do anything about,” Ben’s dad told me, his own emotions frayed.
Finally, the two of us had wandered into the danger zone. We had touched on the uncomfortable conversation about young Ben’s early mortality. We were sitting in the Cumbos’ comfortable suburban Maryland home on a hot afternoon, sipping ice water at the kitchen table. I began hesitantly, forever fiddling with a tape recorder that never seemed to work when I needed it. The beast was hovering.
“Man, that is the toughest thing in the world, trying to bring yourself to face reality…” His voice cracked. “I think it is a tough job, trying to find peace.”
“It must be a journey without end,” I said softly.
“Oh, no question,” Ben responded immediately.
“The biggest fear I have is, the biggest fear I ever had is,” Ben said again, “that I will have to bury my son.” He began to weep. “I would have that fear anyway, if there were not a disease. But this could happen.” We sat looking at each other. “Richard, I want my son to bury his father.”
On the muscular dystrophy video more than eight years earlier, a younger father expressed his grief. “You want initially to beat yourself up. You want it to just go away. You want to wake up because it is the most horrible nightmare you have ever had.”
In his living room these many years later, Big Ben was even more emotional. “I cannot…I just cannot bear to face that. I know that people die in wars. Kids can get hit by a car. But that is the chance we all take.”
“Do you take satisfaction that you are doing everything you can for Ben, that he has the best care available?”
“Not really. I am the breadwinner. I am the protector of the family.” Big Ben breathed deeply. “I failed. I did not protect. I did not do what was necessary to ensure that this did not happen.” Big Ben, as with Buzz, feels a deep failure in his role as a traditional father.
My final meeting with the senior Cumbos came one summer afternoon at the University of Pennsylvania, where Tyler was attending basketball camp. Debi and Big Ben knew what I had come from New York to talk about.
The campus was quiet on this Saturday. We ambled past Franklin Field, named for a different Ben, and headed into the gym, The Palestra, with its rounded high ceiling and old iron girders.
We needed to have one last conversation about the contest young Ben would likely lose one day. “We are all going to die,” Debi said quietly from a seat up toward the rafters. An athletic arena seemed an odd venue for this conversation. Basketballs pounding into the old wooden floor echoed throughout the empty gallery.
By now, the subject of death seemed strangely comfortable. “Some of us will die earlier than others. We do not know when. We do not know how,” Debi began. “I could die before you do.”
“Does young Ben get it?”
“Sometimes.” Debi chuckled. “If we do not have control over it, why worry about it? It’s not for me to say,” she offered calmly, trailing off for a moment. “The man upstairs does.”
Big Ben had described his role keeping young Ben’s spirits up. Debi seems to understand that to keep her son even, she, too, must stay steady. “I have meltdowns,” she admitted. And? Debi clenched the muscles in her jaw. “You boohoo. You beat the sheets. You beat the pillow,” she said, hitting her leg emphatically with a fist. “You ask, ‘Why, why, why?’ Then, okay, it’s done.”
The next step puts the family back on track. “Now we have to move on. You must move forward.”
“I guess you have no choice.”
“Right. You can curse God,” she said calmly, “but I cannot curl up into a ball and not deal with it. That is what we try to get Ben to see.”
“When all is said and done,” I said, “attitude will take a person only so far.” The odds were against young Ben.
“Oh, yeah,” his father responded quickly. “Yes, yes,” echoed Debi.
“Does young Ben understand that?”
“I think that deep within himself he understands,” Big Ben answered. “I think that haunts him.”
We watched Tyler taking control on the basketball court below. The teenager was agile and fast on her feet, hitting long shots and driving to the basket. She was taking risks. Her physical prowess stood in stark contrast to her brother. Tyler has the family quota of self-confidence. The young woman seemed fearless.
“Ben would never share with us his true fears,” his mom said as we sat in the stands. “He would not open up his feelings about what is to come.”
“But he is a bright kid,” I said.
Debi sat back and smiled. “Oh, he is.” She stopped momentarily. “He has to know—”
Big Ben interrupted. “We hold on to hope. Hope is fleeting, but at the same time, we do not know. No one does.”
The three of us were about the only folks left in the stands. The Penn women’s basketball coach had walked over to the Cumbos to chat about Tyler. Her parents were glowing, pleased and proud. Tyler’s tomorrows look bright.
Young Ben does not worry about what may happen tomorrow. “Ben lives for today,” Big Ben said. “His accomplishments are for today. His world is today.”
“How do I approach young Ben about tomorrow and the ticking clock?” I asked the Cumbos on that warm afternoon in Philadelphia. I felt uncomfortable at the prospect of even touching on the subject with their son.
“Let him see the difficulty you feel asking the question,” Dad advised. “Be honest with him.” Big Ben reassured me that honesty is a commodity his son values. “Ben is a noble guy.” Big Ben was telling me that his son would rise to the occasion. “Ben can help you ask the questions, and that may help him answer.”
Big Ben had carried his special calm into the gym. “Just like you have sat here with us and said you do not know how you are going to make him comfortable with it. I think you can ask him. I feel as his father that it is something he will address.”
I did call Ben the following week. The Cumbos had told me he was ready to venture onto Washington’s metro system and meet in the nation’s capital. We picked a time and a place. Amtrak from New York was late. And I did not want to keep young Ben waiting, though Tyler was coming with him for an added sense of security.
The platform area at Union Station was stifling, brutally hot and awash in humidity as passengers disembarked. When I came up from the metro at the appointed station, there were crowds and traffic and street signs that were a blur for me, unreadable at any distance.
As I stumbled along the busy sidewalk, a young woman’s voice rang out behind me. “Hey, Mr. Cohen,” came the yell.
“Tyler,” I said, “funny running into you here.” Actually, I was grateful that they were a little late, too. Tyler was with a friend, and Ben rode along next to them. The young man sat jauntily in his chair, cap pointing backward.
There was the perfunctory and slightly awkward small talk. Ben gestured to his left. Across the teeming intersection sat a Barnes & Noble with the usual café upstairs. We had agreed on that spot for our rendezvous. Ben suddenly zoomed into the street through a curb cut before I could use my cane to negotiate a more significant step down.
Ben was wasting no time, cutting in front of turning vehicles, challenging buses and cabs, as if daring these predators to make a run at him. The kid certainly seemed sure of himself. This was not the tentative kid I had met when he was in high school.
We settled in the café. I wanted a coffee and turned to Ben. “What can I get you?”
“Nothing really,” he answered.
“It is hot out there,” I pointed outside. “Do you want a bottle of water?”
“Not really,” Ben repeated. “I am fine.” It occurred to me that he was reticent to take in fluids because he had no interest in negotiating the unseen bathroom in this strange place. As with Denise, he was eyeing the landscape and planning ahead.
“What have you learned from a year away from home?” I began.
“I have learned not to be a hermit but to put myself out there more,” he answered, projecting a new confidence. Would he have come here to meet me a year ago? I asked. Ben smiled and laughed. “Probably not.”
“Would you have taken a bus to the train and headed for Washington?”
“Prior to college, that would not have happened at all. I do not think I had the confidence to know I could do that stuff for myself.”
Tyler and her girlfriend had wandered away, though I continued to feel their gaze from behind a stack of books somewhere. Customers came and went around us, paying little attention to the two guys and a tape recorder. My delaying tactics had run out.
“Are you afraid to die?” I finally asked.
There was not even a pause. “Not really,” Ben answered quickly. “It is inevitable for all of us. There is no sense in being afraid of something that is inevitable.” He laughed. “Just please do not tell me the date.” That seemed reasonable.
“Is dying something you think about?”
“Oh, yeah, it is something I think about. What if there is nothing on the other side and this is it? Would I have wasted my life and I will just fade away?” Ben raised doubts about his Maker’s job performance. “I certainly wonder why, if God is a magnificent being, why doesn’t he get rid of the disease right now?” I hoped he was not expecting an answer.
“Ben, do you want something to eat?” I was thinking I would rather hear this kid chew than listen to him talk about dying.
“No, thanks. I am good.”
“Ben, we have gone back and forth about religion. How important is it in coping with your illness?”
“To be honest, organized religion just gets on my nerves. Every religion says we are going to heaven, and everyone else is going to hell. I cannot believe that.”
“What do you believe?”
“Whether you call God Allah, Jahveh, whatever you believe God’s name is, or if you do not believe in God at all, everyone finds their way. I do not believe in politicizing something that spiritual and close to your heart.” Doubt spoke for itself.
“If you are looking for religion to fix all your problems, it is not going to get you anywhere,” Ben answered. “I believe that God will not help us if we have the strength in ourselves to do it. It is only at that time when we just cannot do it that divine intervention comes in.”
This young man seems to believe in the burden of personal responsibility. The Lord, it seems, is not his co-pilot. “I believe it is up to us to make a difference in our own lives. I think we have a core of strength we can rely on in tough situations.” Only a kid with a life-threatening disease or bullets whistling overhead thinks through these highly personal questions at this age.
Then how do you do it? I came close to demanding. What is the magic?
“I knocked some sense into myself, knowing that I am in a tough situation,” Ben answered calmly. “There are billions of people in this world who live a lot worse than I do. There are people who are starving and do not have anything.”
“But you are an endangered species. This is your life. You might die sooner than you expect. Is the relative plight of others enough to get you through?”
“I could be a soldier in Iraq right now, and God bless those guys. That helps quell my frustration. My gratitude takes over. I have a loving family and a roof over my head. It may not be a cure-all, but my selfishness can fade away and I realize how lucky I am, how blessed I am.”
I blinked hard. “And you mean it when you say you are lucky.”
Ben sat back and smiled. Actually, he grinned. I think he had figured out that the conversation was coming to a close.
“Thank you, Ben,” I said as I reached for his hand. “This was hard work, and you are a trooper to talk with me.”
“This was good,” Ben said suddenly. “You forced me to think about stuff.” Already, he seemed to be evaluating our ad hoc relationship. Our intense dialogue and budding friendship had evolved.
Ben understands that his journey will be cut short. As with Denise and Buzz, the ticking is loud, the days numbered. And he is barely twenty, old beyond his years. Some chronic illnesses bring inevitability into a life. There will be no appeal.
Tyler and her buddy appeared on cue for our goodbyes. In the end, Ben had looked hard into his life, discovering no greater peace than he could claim as we began our dialogue. With whom, if I may ask, should he have made that peace? Perhaps his Maker? His mother? Himself? Any of those would make sense, Ben would agree.
I looked into Ben’s eyes and could see the wheels slowly turning. That movement never ceases. “I promised your mom you would be on the train before rush hour. You should get going.”
“Don’t worry about me.” Ben chuckled. “I have plenty of time,” he said with no hint of irony. And the three were on their way, vanishing into the elevator.