The night before the surgery, Bob Maciunas was restless. He brought five neurosurgery books and eighteen journal articles that he had laid on out the kitchen table to the couple’s king-sized bed.
“I just want to make it better for him,” he said, his eyes darting between the books as if cramming for a final exam. “I just want to make it better.”
Ann had never seen her husband this anxious. “Honey,” she finally said. “You’re not going to make it better unless you shut up and go sleep. Let’s just sit and relax.”
She rubbed his back until he finally fell asleep.
38
Keep Calm
THE PHONE RANG many times in the months before the surgery. Mostly it was family and friends asking about Jeff. Switching her gaze between her husband and the ringing phone, Debra would hold up her hand as if to say “I got it.” Her job: give them the information, run interference, shoo them away.
Jeff couldn’t talk to them anyway. With the severity of his tics, his words would be gibberish, peppered with forced exhalations of air. Besides, his arm tics might cause him to whack himself on the side of the head with the phone.
Debra always repeated what the caller said so that Jeff could hear. Their sentiments were nice. But so many people called that it got old after awhile. Eventually she started making jokes.
“How’s Jeff doing?” she repeated, smiling and winking at Jeff. “Oh, you know, he’s just typing out the eighty-fifth page of his PhD dissertation on particle physics,” she said. “He’s presenting it tomorrow to the board.”
But callers couldn’t help but hear his explosive verbal tics in the background.
“Huh-HUHHHHH!”
“Don’t worry,” Debra said. “He’s just swinging an aluminum bat. He’s playing catch outside in the backyard with Mike.”
“HUH! I really got a hold of that one,” Jeff would yell.
Then she’d smile, thank them for their kindness, and tell them that 189 everything was going as well as could be expected.
As Jeff waited for his surgery, he had to remain as calm as he could. No unnecessary stress or stimulation of any kind. Doctors’ orders. They had one shot at this, and they didn’t want to take any chances. Jeff wasn’t to take phone calls or go to parties. He even had to bow out of his family’s annual Christmas celebration.
Not all of his friends or family understood. And why would they? Jeff hadn’t told them everything. He hadn’t told them how risky the operation was or that it could kill him. He just didn’t want them to worry or, worse, try to talk him out of it. His mind was made up.
In the months before the operation, Jeff ate more fruits and vegetables than he had in his life. He walked with extra care, washed his hands excessively, avoided germs at all costs, held on to things when he could. He just didn’t want to get sick, injure himself, or do anything that could compromise the surgery. He was in full protection mode. He almost wanted to surround himself with bumper rails or live inside a bubble.
Then it happened. Debra heard a loud bang as Jeff crumpled to the floor. “Oh my God,” she said. While walking through the dining room Jeff’s body shook violently from head to toe, as hard as it had in several months. He lost his balance and fell, slamming his head hard enough against the dining room wall to put a dent in it and wake up the kids upstairs.
“You’re going to be OK,” Debra said, sitting on the floor, rocking and holding Jeff tightly as a tear rolled slowly down her cheek. “You’re going to be OK. You’re going to be OK. Remember, you’re a tough one.”
Jeff nodded his head.
“It’s going to take more than this to stop you.”
Jeff nodded and squeezed her hand.
“You hear me?”
He nodded.
“All right,” she said, stroking his arm. “OK. It’s all right. It’s all right.” Debra looked at the dent in the dining room wall and smiled. “You got a damn hard head, you know that?”
39
Last Rites
THREE WEEKS BEFORE the surgery, Jeff came to his parents with a request. He asked them to say a prayer, asking God if the surgery was not going to be successful to simply let him die on the table.
Jeff had to believe the operation was going to work. But he also had to be realistic. This was major brain surgery, and one of its risks was death. No matter what happened, he needed to be prepared—just in case. He asked a priest to give him last rites.
One week before the operation, accompanied only by his father, he attended an intimate Mass in a small section of St. Francis Chapel used for baptisms and special blessings. For Jeff, getting last rites was a spiritual and mental housecleaning, a way to prepare and bless his body for God should something go wrong on the operating table.
Jeff wanted the blessing. What he did not want was a circus, with dozens of friends and family blubbering over him and making a scene. This was too personal. This was between him and his God.
The Mass, conducted by Father Casey Bukala, a balding priest in his early seventies with kind eyes and a light brown moustache, began at 5:30 PM. Jeff had requested an evening mass because he loved how the sun shone through a breathtaking circle of stained glass in the back of the chapel. During the service Jeff asked for forgiveness for his sins.
“God,” he prayed silently. “I know we’ve had our ups and downs. I’ve shut you out, I’ve held you close, and I’ve cursed your name. We’ve seen the ultimate highs and the ultimate lows. But I ask that with your forgiveness we will one day be able to see eye to eye.”
In the middle of the Mass, Father Bukala called Jeff to the front for the blessing. As he faced the priest, Jeff suddenly had an overwhelming feeling of peace, and a sense that God’s will would be done.
Jeff repeated the Lord’s Prayer after the priest. Then Father Bukala brought out the holy oil in a crystal decanter. He took the lid off and dabbed his right thumb into the oil, which had been blessed before the service, and used it to make the sign of the cross on Jeff’s forehead.
“Jeff,” he said, “receive this special blessing of the Holy Spirit, and may peace find you and relieve you from your ailments so that you can be always one with the Lord.” After, Father Bukala made the sign of the cross while facing Jeff and said, “In the name of the Father, the Son, and the Holy Spirit. May you receive this blessing.”
“Amen,” Jeff said. As he walked slowly back to his chair, he looked at his father and began to tremble. Would this be the last time he’d attend Mass with his dad? He closed his eyes and fell into his father’s firm embrace.
“I love you,” his father said, holding Jeff firmly while softly patting his back. “You’re in God’s hands now. He’ll guide you to wherever you need to be. I’m so proud of you for becoming the man that you are, and for all that you’ve overcome.”
40
Tic Tic Tic
JEFF TWITCHED. HE couldn’t have twitched harder if he had been struck by lightning. Fighting for balance, he lurched across his living room. He took large steps, followed by short ones. Forward ones, followed by backward ones. His shoulders heaved, and his long arms flew out as if yanked by wires. Just before reaching the couch he crumpled to the floor.
In hours, surgeons would bore two holes in his head and peer deeply into the recesses of his brain. Late in the evening, an icy wind swirled outside his Cleveland suburb, and snow covered the street like a satin sheet. But inside, Jeff looked like he’d just stepped from a sauna. Rivers of sweat snaked down his bare chest. Alone in the darkness, he focused on a single thought: “Just make it to 4:00 AM.”
Things would be better then. He looked at the clock. The shaking of his closely shaven head made the numbers dance and blur. 10:00 PM.
In a perfect world he might have passed the time with a TV show or book, a sandwich or a long run. Not on this night. Doctors had warned him not to have anything to eat or drink. He couldn’t read for fear he’d rip the pages out of the book. TV would only activate his obsessive-compulsive disorder.
<
br /> As for running? He couldn’t even walk down the stairs. The only thing left: suffer. He curled into a ball as the nerve-jangling urges exploded across his body again, leaving him to writhe on the hardwood floor. He shifted in place, searching for a position that would satisfy the greedy compulsions. When he didn’t find one, they shook him like a 193 wet dog. His life wasn’t so much about living anymore as surviving. But on this night, he told himself, that was enough—at least until 4:00 AM. It was a finish line of sorts. Or was it a starting line? Either way it was everything he had ever dreamed of, the answer to his prayers, the key to a new life—provided it didn’t kill him first.
Four AM was when his alarm would ring, and he would head to the hospital. There, a team of specialists would root around in his brain while he was still awake, using an operation not approved for Tourette Syndrome, to do what they could to relieve a lifetime of suffering. His heart hammered in his chest. He wondered if this might be the last time he’d see his wife, Debra, or her children, Bonnie and Mike. He worried this might be the last time he’d talk to his mother and father, or his older brother, Steve.
Eleven thirty. His muscles burned. He was tired of ticking. Tired of worrying. Tired of waiting. Whatever the surgery would bring, he just wanted it to begin.
It would have been easier if he could have slept. He had tried. But when violent full-body spasms caused him to bounce off the bed like a trampoline artist, he gave up. Debra never complained. But Jeff knew she was just being nice.
He got up to go downstairs. At least somebody should get some sleep, he thought.
As he walked, the floorboards creaked beneath his toes, which had taken to thrusting him upward every few steps as if he were a gigantic ballerina. At the top of the stairs his arm flew out, then his leg. He grabbed the wooden handrail to keep himself from falling. He put a death grip on the railing as he started unsteadily down the first stair. Just then a powerful arm tic nearly caused him to rip the railing from the wall.
OK, he thought. Maybe walking down the stairs by myself wasn’t such a good idea. He sat on the top step and bumped down the stairs on his bottom like a four-year-old. He felt silly, but it was better than breaking his neck. In the living room he sat on the glossy hardwood floor and tried to relax. But with the operation of his life scant hours away, his excitement pushed his tics to new levels.
A thin, cut athlete, Jeff was in superior shape. But he would have traded bodies with the Pillsbury Doughboy if it meant no more tics. During a rare calm moment he leaned against the couch and fanned his hand across the top of his bristly black hair. His fingers pressed through his scalp to the hardness of his skull. He stopped at a familiar place on the crown of his head, and a chill ran through him.
This was where they were going to drill.
Adrenaline swept through his chest, and he punched his arm so hard his elbow cracked. “HUH-HUH!” he grunted, forcing air hard out of his mouth. He closed his eyes and said a prayer as the clock struck midnight.
He had almost made it. There would be no more “enduring” his Tourette’s. After thirty-one years in hell he had reached a crossroads. Either he was going to get better, or he was going to die—even if it had to be by his own hand. He had committed to taking life pass-fail; his final exam was less than twelve hours away.
Twelve hours! he thought. It couldn’t come quickly enough. If only he could watch TV.
He didn’t dare. While his physical tics were hard to deal with, his mental tics could be even worse. When activated, they’d hold his brain hostage, looking for angles, calculating midpoints, fanatically multiplying and dividing prime numbers like a malfunctioning computer. Recently he had watched a professional basketball game. His obsessive-compulsive disorder made him catalog everything from the bounces of the ball to the number of rotations it made on a shot. He knew it was stupid, fruitless. He also knew he couldn’t stop it.
He passed the time by ticking and thinking about the operation. They’re going to be in my brain today, he thought, smoothing his hand over the crown of his throbbing head. And they’re going to make it right.
He looked at the clock again—3:47 AM. His father-in-law, Mike, would arrive soon to take them to the hospital. Most people called Mike “Doc.” He’d come by the name honestly, having worked for decades as a podiatrist. Debra’s parents lived two miles away. Doc volunteered to drive. Bonnie and Mike spent the night at their house.
Four AM. The alarm clock rang upstairs. Debra got out of bed, pulled on a robe, and walked downstairs to check on Jeff. She found him sitting on the floor, ticking hard and leaning against the couch.
“How long have you been there?”
“All … night,” he said, barely getting the words out. “I—HUH! I thought it would be better to come down here so … I … wouldn’t wake you, and you could get some … sleep.”
“That’s really sweet,” Debra said. “But you didn’t have to do that.”
He tried to respond. She placed her index finger on his mouth. “Don’t talk anymore. Your stuff’s all packed.”
She headed upstairs but stopped to glance back at her husband. Catching his eye, she walked back down and rubbed his shaved head, knowing his future—and hers—lay somewhere inside of it. They laughed, and he flashed a smile—that wide, goofy, irresistible smile that always made everything else about him disappear.
She bent toward him and placed both hands out as a protective barrier to keep an ill-timed shake from knocking out her teeth. Then, slowly, carefully, she kissed him on top of his head. “I’m going to go get my shower,” she said. “You just relax.”
Jeff climbed onto the couch and looked down the block in the predawn darkness. A light snow fell. Some of the houses still had their Christmas lights on. What a beautiful a day to go get my life back, he thought.
Debra had packed for him the day before. The suitcase sat by the front door. Doc’s minivan pulled into the driveway around 5:00 AM.
Grabbing him tightly so he wouldn’t fall, Debra helped her husband into the seat behind hers and buckled him in. During the twenty-minute ride to the hospital, Jeff felt a strange feeling that he had rarely felt in the last few years—a feeling of control returning to his body and a sense of peace.
Looking out the back window he saw the tire tracks the van made in the snow. They made him think of his life—where he’d been and the places he was going. Shortly before 5:30, Doc pulled the van onto Euclid Avenue, then into the hospital’s curving driveway. Debra helped Jeff out of the van. “Let’s get you inside,” she said. “It’s cold.”
“Deb,” Jeff said, now able to speak. “Let me just stand here and feel this. It’s going to be a few days before I’m able to get fresh air again.”
He faced the hospital doors, sucking in as much of the cold air as his lungs would hold. He glanced back down Euclid Avenue. For a moment, he froze, not moving, thinking about everything and nothing at the same time. He thought again about his life as the sparkling snow danced and swirled in the whipping winter wind. He took a few last deep breaths, promising to remember how good they had felt.
Finally ready, he turned back to Debra. “All right,” he said, “let’s go.”
41
The Pre-Op Comedy Hour
University Hospitals, Cleveland, Ohio. February 9, 2004.
On an excitement scale, waiting for surgery alone in a tiny hospital pre-op room hours before the sun comes up was only slightly better than freezing to death in a meat locker. On the one hand, it was cold. On the other, it was boring. Pre-op rooms, like operating rooms, are kept unusually cool to slow the growth of bacteria that can lead to dangerous infections. And at barely 5:00 AM, there wasn’t a line, or much of anything else. When your nurse finished prepping you, you were pretty much alone with your saline drip until your doctor showed up.
For Jeff that wouldn’t be for a while. Dr. Maciunas was running late. Jeff didn’t mind. He had waited his whole life for this day. What was another hour?
When his
doctors finally arrived it took them three hours to fit him with the titanium halo they would later bolt to the table in order to hold his head motionless for surgery. They put two screws into his temple and two more near each cheek.
To Jeff the halo just seemed like a cool, high-tech face mask. “Can I have this when this is all over?” he asked.
“Sure,” Maciunas said. “If you have $86,000.”
After making sure the halo was secure, doctors took Jeff for a quick MRI to ensure that it was properly aligned. Then they left to prepare for the operation. There was nothing to do but wait in the cold, lonely room, so the nurses bent the rules and let Jeff’s family in to help pass the time. At 9:15 AM the six family members who made it to the hospital—his mother, father, brother, Debra, Aunt Suzie, and cousin Kelly—gathered slowly around his bed.
“What’s up, guys,” Jeff said.
As they looked at Jeff their eyes narrowed as if to say, “What is that thing on your head?”
“Gosh, does that hurt?” Aunt Suzie asked, getting so close to his face she could see the deep indentations made by the screws. She covered her mouth with her hand and said, “I’m sorry. I didn’t mean that.”
“No,” Jeff said. “It’s totally cool.”
Then she turned to her sister, Jeff’s mother. “Look how deep those screws are,” she said.
Jeff looked at his older brother, who had never been comfortable around blood or medical procedures. His face was turning white and he seemed a tad wobbly. Jeff reached over with his left arm and grabbed a glass of orange juice. “Steve, want some OJ?” he said. “You’re looking a little pale, there.”
Then he yelled to the reception nurse at the desk. “Hey, you mind if we get some chairs?” he said. “We’re having a party in here. I’m about to change my life today.”
She laughed and brought over chairs that they arranged in a semicircle around the bed. Some sat. Others stood. His parents sat closest to him, on his right. His father looked at his youngest son and shook his head. His mother reached out to put both of her hands on top of Jeff’s right hand, which was resting on the gurney. Then his father did the same, putting both of his hands on top of her hands. Jeff looked at both of their hands touching his and smiled softly. As he looked into their eyes, all three of them welled up with tears. In the silence Jeff promised he would remember that moment forever.
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