by Mark Bowden
By late afternoon on our second day in The Magic Kingdom, Billy wasn’t feeling well. Donna had been wheeling him around all day in a stroller, carrying him wherever the stroller wouldn’t go. Now he complained of feeling chilled. On our way out of Disney World, she decided to buy Billy a jacket. His lower jaw was shaking.
She emerged from the gift shop with Billy in her arms. He was wearing a brand-new red Mickey Mouse windbreaker. He looked peaked. The spaces under his eyes were darker than usual, and he had fallen uncharacteristically silent. I asked him how he felt. As mothers will, Donna started answering for him, offering her expert assessment of her son’s situation. Billy turned and interrupted her sharply, speaking so pointedly that both of us were left momentarily speechless.
“You don’t know how I feel,” he said.
When we returned from The Magic Kingdom that night, Billy immediately fell asleep. He awoke refreshed and happy some hours later, but Donna still detected a slight fever when she felt her son’s belly. With the second round of chemotherapy under way, the boy’s immune system would be weak, leaving him highly susceptible to viral infections—even to normal body bacteria that would cause no problem in a healthy person. Twice during his first round of treatments, Billy had suffered pneumonia, and Donna had learned to be cautious.
Because Billy’s temperature was higher than normal, Golasa wanted to call Billy’s doctors and ask their advice. “They might want him to come in as soon as we get back,” the nurse said. “At this stage we don’t want to take any chances.”
The next morning, Billy’s temperature was slightly higher, but at breakfast he seemed to be feeling all right. Donna didn’t have the heart to keep him from joining the other kids for a quick dip in the swimming pool. They would have to leave in an hour for the airport.
It was there she regretted her lenience. Billy’s fever was rising, and his lower jaw was shaking from the chill. He sat upright in the waiting area, in a chair next to his mother’s, stroking the worn orange puppet that accompanies him everywhere. He was wearing his new windbreaker. His mother’s purple jacket was draped across his legs, and his feet stuck out from underneath. They were fitted in new Nike tennis shoes laced with the alligator-print shoelaces his dad had bought him.
“Do you want to make a bed?” his mother asked, inviting him to lay his head on her lap.
“Yes…I mean, no,” Billy answered. “I just want to sit right here.” The boy spoke with such crisp authority that a woman seated across from Donna caught her eye, smiled, and chuckled at the scene. Donna made a face and laughed along with her.
“Stop it!” Billy demanded, startling both women. “I don’t like people to laugh at me.”
“We weren’t laughing at you, sweetheart,” Donna said sympathetically. “It’s just that you looked so cute sitting there…we were laughing with you.”
“I wasn’t laughing,” Billy said sternly.
“Oh,” Donna answered, clearly out-argued this time.
“He has such lovely hair,” the other woman said, changing the conversation.
“He’s going to lose it soon,” Donna said sadly, reaching over to gently stroke Billy’s locks. “The drugs will make it all fall out again.”
“Does it bother him?” the woman asked softly.
“Him? No,” Donna said. “He could care less.” Then she mouthed from behind him, “I care.”
Carl came to meet them at the airport, but Donna and Billy didn’t make it home that day. While they were waiting for luggage at Philadelphia International, the nurse took Billy’s temperature. It had risen to 104. He was withdrawn and pale; the darkening under both of his eyes had deepened. He was still shivering.
“At first I was just going to take him home,” Donna said. “Part of me just hoped all he needed was rest. Whenever he has to go in the hospital, I have this little denial stage I have to go through. Carl said to me, ‘Aren’t you going to take him in?’ And I told him that I was afraid if we took Billy by for the doctors to look at him, then they would want him to stay—you get to the point where you just know these things—but, of course, as soon as I’d said it, I realized how ridiculous that was because obviously if they wanted him to stay, he needed treatment. Carl said, ‘Donna, Billy’s your boy and I’m not telling you what to do, but if he were my kid, I’d take him to the hospital.’ So we came here right away.”
She was dressed now, three days later, a Saturday, in faded jeans, a blue T-shirt, and powder-blue track shoes. We talked in the lobby at St. Christopher’s. She had slept Thursday night in Billy’s hospital room, on a folding bed alongside his. Billy’s father had driven down from North Jersey to spend Friday night and most of Saturday. Now it was Donna’s shift until late Sunday. The boy’s fever had been going up and down; he was weak and irritable. His white blood cell count was, medically speaking, nil—the anticancer drugs kill good cells along with bad cells. In the absence of these microscopic guardians, some virus had seized his system.
And now, in addition to his leukemia drugs, Billy was getting antibiotics, nutrients, and other chemicals intravenously, through a tiny plastic needle in the back of his right hand.
“I was crying when they inserted the IV—you know, the crying where you make no sound, but tears start rolling from your eyes? You know how brave Billy is with needles. Well, they had to poke him three times to find a vein this time. For some reason, they would insert the needle and start probing around, but the veins kept just rolling away. Billy was hurt and crying. I was almost sick to my stomach.”
In a darkened hospital room, Billy lay naked under a white sheet. His right arm was taped to a board so he couldn’t move his wrist and accidentally dislodge the IV. He looked pale. There were blue plastic pans filled with water and wet cloths on a rolling table beside the bed—Donna had been bathing him periodically with cool water to help keep the fever down. All the shades were drawn despite the beautiful afternoon because Billy complained the sunlight hurt his eyes. He was watching TV.
Beside Donna’s cot was a stack of books, most about health and nutrition, and the shelf under the window was lined with canned fruits and fruit juices and healthful snacks. Billy’s Disney World keepsakes—his toy gun, Mickey Mouse ears, and other brightly colored souvenirs—were scattered around the room. Their small space had acquired a lived-in, rumpled look.
I asked Donna how she passed the hours.
“I watch TV. I read. I talk to the doctors and nurses here on the ward or on the telephone. I sleep. I take care of Billy. I’m usually busy.”
“Mom?” Billy asked.
“Yes?”
“When do I get the IV taken out?” With what must have been quiet envy, he had been watching Aaron, along for the visit, run and climb around the room.
“Let’s see,” Donna answered. “In three days.”
Billy took that in for a moment and then asked, “Mom?”
“Yes, dear?”
“How long is three days?”
“Well, today is Saturday, so tomorrow is Sunday, and then the next day is Monday and then comes Tuesday. So it will come out most likely on Tuesday.”
Billy nodded without expression and looked down sadly at the arm taped to the board.
“A long time,” he said softly.
Billy didn’t get the IV out of his arm until the next Saturday. By then the fever had gone, and doctors felt he could safely go home.
It had been nine days since the group had returned from Disney World. One of the children on the trip, fifteen-year-old Kimberly Wildonger, had developed a brain tumor and died. She had stayed her last days in a hospital room just down the hall from Billy’s. Donna was shaken.
“My last memory of Kim is of her father lifting her up out of the wheelchair so she could look in the window and wave to Billy,” she said, choked with sadness and dread.
Another of the children, fourteen-year-old Stephanie Schwartz, had checked into the hospital that week. Her leukemia had returned. But Anthony Mancini, the eleven-year
-old who was too sick to make the trip, was doing better. His leukemia was back in remission.
Life and death had resumed their routine at St. Christopher’s.
Despite the pleasure Donna felt that Saturday in getting Billy out of the hospital, she was worried and depressed. She had the boy propped up on the couch, watching TV, because his legs hurt so badly he couldn’t walk. There were purple bruises all over them.
The pain might be muscular, caused by the injections he had been getting. But it might also originate in Billy’s bones, which would indicate a more deadly form of leukemia. She planned to take him back to St. Christopher’s on Monday for more injections. She and Billy’s father would then give some of their own blood to determine whether either’s bone marrow might be suitable for a potentially life-saving transplant.
On top of all that worry, Donna had just spent a long day moving out of her apartment in Northeast Philly. She and Billy were staying temporarily with a friend, but she had not yet sorted out exactly where they’d go from there. Her mother and stepfather in North Jersey were urging her to move in with them, but that would mean quitting her job and leaving behind much that is important to her here. She was emotionally exhausted.
“Living with this is…” Looking across the room toward her son, she completed the thought by drawing her lips together and exhaling a long and confounded sigh. Then she smiled.
Donna and Billy work together every night to bring to bear on the disease whatever psychic healing energy the boy has. She makes it a game, but it is not a game. Billy lies flat on his back, and Donna sits next to him on the floor.
“Let’s imagine you are lying down in your favorite place in the world. It might be under a tree or in your bed on a beach. I think my favorite place would be on a beach with the sound of the waves in the background. Now you’re lying there, quietly, and you’re totally relaxed, completely relaxed. And the way we do that, remember? The way we do that is to first tighten up all of the muscles in our legs and arms and tummies, tighten them up real hard”—Billy tenses his body stiffly, gritting his teeth with exaggerated effort—“and then we relax and let everything go loose. Completely loose.” The boy settles back into the pillow. He has a slight smile. “Now that we’re quiet and completely relaxed, it’s time to fight the battle. Imagine stretching off in front of you is a big hill, and on top of the big hill is a castle, a giant dark castle. And inside the castle are the Bad Guys—we call them the baddies—and the baddies could be anything, they could be germs that give you a cold or they could be those bad blood cells. Now it’s time to summon your armies. Imagine a great white light just over your head, shining down on the hillside in front of you, and what do you see there in the great bright white light? Your army, a huge army with jets and weapons of all kinds, light sabers and guns and everything. And when you’re ready, this army is going to attack the castle. They begin moving up the hill and sweep up to the castle, and you are leading the charge, you are the leader, the boss of the armies. You show them the way. They storm up to the walls and break down the doors—the baddies are fighting them every step—but the good guys, your army, is killing them all. You just keep on fighting. Imagine the great battle waging right there before you. And all the baddies must be killed—you can’t leave a single one. If they are hiding in the corner, you have to drag them out and kill them. None of them can be left alive. Then the battle is over. All the baddies are dead. Their bodies are lying all around you. Now you have to, one by one, have your armies carry the dead bodies down the hill. At the bottom of the hill is a big pool, or like a giant toilet, and when you bring the baddies’ bodies down there, you dump them in and when they’re all in, you flush them away!”
On this night, when the game that is not a game was over, Billy opened his eyes happily and sat upright.
“How were your armies tonight, honey? Were they strong?”
The boy nodded.
“How strong were they?” Billy didn’t say. He just held up both arms, flexed his muscles, and grinned.
FIGHT TO THE FINISH
SEPTEMBER 1994
This story resulted from a death notice, those small, agate-type items that run like classified ads alongside the obit page that ordinarily just recite the barest details about the deceased. Janet Jones, Mike McConnell’s widow, had written instead a long tribute to her husband, in which she spoke frankly about his death being a suicide—something almost never done. At the time I had been assigned to a beat at the paper called “Behavior,” which was general enough to allow me to write about anything I wished. I flew out twice to Yakima, Washington, to spend some time with Janet, to meet Mike’s family, and to learn about how he had struggled in vain against bipolar disorder. The tangle of emotions he left among the loved ones in his wake, feelings of anger, guilt, and suspicion, were enough to give any potential suicide pause, but ultimately the story concludes that the disorder can be too powerful to resist, even by someone so in love with life.
On a small road on Ahtanum Ridge that turns north from where, on a better day, he and his wife had gathered rocks for terracing, they found Mike McConnell’s body in the front seat of his silver Nissan station wagon, motor running, soft jazz still playing, the waning sun throwing long shadows eastward down the dusty slope.
He had run white vacuum cleaner tubing from the exhaust up to the passenger-side rear window. Sections of the tubing had been joined with metal clamps to make it long enough. Duct tape sealed the window around the tube. The one set of footprints in the loose dirt outside the car showed how methodically he had done all this and then stepped back behind the wheel and shut the door to die.
He looked asleep. All the pain that had so hardened his face had drained away. He was forty-two. He was an accomplished physician, beloved husband, father, brother, son. He played the saxophone. He wrote moving, searching, sometimes hilarious letters. He relished wine and foreign films and making love. He went sailing in the Caribbean, backpacking in Yosemite, and hard biking up and down the Cascades, the mountains he could see from the hot tub on the deck of his hillside ranch in Yakima, Washington. He loved to catch trout and ride horses.
In an ebullient letter he wrote home from college as a young man, Mike said, “I just want to be swept up by life, surrounded by it, filled with it!”
Except when the cloud came. Mike McConnell was one of roughly three million Americans who suffer manic depression, or what medicine now calls bipolar disorder, a disequilibrium of the brain that provokes wild periodic mood swings from euphoria to despair. It is an evil inheritance, an ongoing family nightmare, a suicide gene that stalks the McConnells from generation to generation. Eleven years ago, Mike’s mother, Jeanne, shot herself in the forehead. Other family members struggle with it now. His three sisters watch their children with fear.
For all the remarkable progress of science and medicine in this century, mental illness remains poorly understood. Depression, one of its most common forms, is often seen as a character flaw, a lack of stamina, or just morose existential angst. Yet it is as concrete as cancer. Researchers can take pictures that show striking differences between a normally functioning brain and one in the grip of depression. Just last spring, researchers at Thomas Jefferson University in Philadelphia, where Mike was once an instructor, identified a specific sequence on chromosome eighteen of the human genome that appears to make certain people predisposed to the affliction.
“The thing about Mike is, he really was such an extraordinarily gifted, beautiful human being, it makes you appreciate that what happened to him is a disease, that it reflects no failing in him, no poverty of spirit or will, it was just this thing,” says Dr. Michael Baime, who supervised Mike through a residency in internal medicine at Philadelphia’s Graduate Hospital. “It came over him like a cloud.”
“This thing” amounts to cyclical bouts of utter, blank despondency. Author William Styron borrowed from Milton’s Paradise Lost to describe his experience: “darkness visible.” Mike said he felt as if his mi
nd were “cannibalizing itself.” As if someone had thrown a switch, all the joy was gone. He would awaken mornings then, swing his feet off the bed to the floor, stop, and weep. All the ordinary issues of life would be blotted out by the single, oppressive, ultimate crisis. “Why? Why bother to get up? What’s the point?” he would ask his wife. He wouldn’t eat. Nothing reached him, not even the smile of his six-month-old daughter.
Most bipolar patients recover. They respond to counseling and to lithium, carbamazepine, valproate, or other drugs. In the most extreme cases, many are helped by electroshock therapy. They learn to manage highs and lows. But for a small minority of bipolar victims, nothing works.
It is hard to track the numbers precisely, because most suicides suffer depression, and most sufferers (particularly those who eventually kill themselves) never get treatment, but it is estimated that 15 percent of depressives commit suicide. Suicide is the eighth-leading cause of death in this country. More people kill themselves in America each year—31,230 in 1993—than are killed by others.
Mike McConnell tried everything. In May, during the weeks before his suicide, he had undergone seven electroshock treatments. “When it works it’s a wonder,” says his wife, Janet Jones, “but it’s basically just a medically induced grand-mal seizure.”
The sessions left him reeling. They blew big holes in his memory. Mike the wit, the intuitive one, began missing subtleties in conversation, struggling to make simple connections. It was like bartering for sanity with pieces of his soul. He knew the pathology for hopeless cases. He had watched his mother. The breakdowns would accelerate, each one mining a new black depth.
Early on the day he took his life, he stood at the kitchen sink with his wife and broke down with anger and sadness: “You know, I know, everybody else knows! I’m going to have to face this again and again and again and again!”
