Thinking about death was hard. But it had to be done.
Just in case.
Jeff never had life insurance. He didn’t have any money. His most important possession was a cedar chest. He lifted the lid. Inside were letters of prayer and support from his grandparents and red-and-white crocheted Valentine’s Day hearts from his grandmother.
He lifted one up that read “I love you, grandson,” then set it back down.
The most meaningful things he kept in the trunk were a six-by-six-inch framed picture of St. Joseph that had been displayed in the casket at his Grandpa Matovic’s wake and two of his grandpa’s prayer books written in Slovak.
He closed the lid, then closed his eyes.
THE MORNING OF the meeting Jeff’s mouth was dry and he could hear his heartbeat. He rehearsed his presentation in his mind, visualizing the scene and trying to think positively. His muscles were so hot from violent thrashing, he took an ice-cold shower. After he got out, he threw two ice packs around his shoulders and looked at himself in the mirror. Even after the cold shower, the ice bags melted quickly on the back of his hot neck.
“This man is going to understand,” he said, staring into his own brown eyes. “He has to understand you, Jeff.”
He stepped away to pace back and forth like tiger in a cage. Then he said out loud, “He’s going to say yes today. He’s got no choice!”
He continued icing his chest and his neck. Then he pointed at himself in the mirror. “You go do what you have to do,” he said. “And get it done!” He pulled on a pair of blue North Carolina gym shorts, a short-sleeved white T-shirt, and a pair of white high-top Reeboks with dark blue trim.
At University Hospitals Jeff was ushered into Maciunas’s office and told the doctor would be with him in a moment. The office was standard issue, with pictures of the brain and nervous system on the wall and framed articles about movement disorders and neurosurgery.
As he waited for the doctor, Jeff played with a plastic model of a brain on the doctor’s desk. Its four color-coded sections could be taken apart. As he held the right hemisphere of the brain, an explosive tic in his right arm caused him to spike the piece like a football. It slammed hard off the ground and went flying, bouncing off the exam table and hitting the wall. Mortified, Jeff scrambled around on his hand and knees to find it.
Oh, Lord! he thought. Don’t let him walk in now. Ticking ferociously, he finally found the part by Maciunas’s chair, wedged between the wall and the exam table. Quickly he put the model back together and made sure it was facing the right way. As he sat back down, sweat dripped into his eyes and ran down his nose.
Man! Jeff thought. If he says yes, I certainly hope he takes better care of my brain than I did of that model!
He turned around in time to see the doctor walk in the room. “You must be Jeff Matovic,” Maciunas said with a genuine smile. “How are you today? I’m Dr. Maciunas. It’s a pleasure to meet you.”
The meeting lasted an hour and fifteen minutes. In it Jeff did his best to persuade Maciunas of three things: that his worsening Tourette’s had boxed him into a corner, leaving him with a life that wasn’t worth living; that he wasn’t crazy, just in pain; and that he just knew that deep brain stimulation could be the answer he was looking for.
Maciunas felt the urgency in the visitor’s voice and saw the passion in his eyes. He was awed by Jeff’s intelligence, moved by his struggle, and impressed by his in-depth knowledge of the operation’s risks and benefits. But he also knew Jeff was a true believer who had convinced himself that DBS was a panacea that would end his decades of unimaginable suffering. For Maciunas, that wasn’t enough. He had to be sure that Jeff knew that the operation—while it had helped others with movement disorders—had no guarantee of helping him. In fact, he said, it had only been performed three times on patients with Tourette’s—all of them in the Netherlands.
“And I have to tell you, Jeff, they were not completely successful,” he said. Still, he was intrigued by the challenge and by the opportunity to change a life.
Finally, he came to a decision. “DBS looks like a viable option,” he 169 said. “But I can’t promise you anything. I’ll need about three weeks to see if you’re a good candidate for the surgery.” He wanted to do more research and have Jeff evaluated by several of his colleagues.
It wasn’t a yes. But it wasn’t a no.
“I’d like to start by having you meet with a colleague of mine,” he said. “He’s an excellent neurologist named Brian Maddux. If at any point any of this looks like it isn’t fitting your needs, we will stop. But if it is fitting your needs, we will keep going. Does that sound good?”
“That sounds great,” Jeff said. “Just great.”
33
A Real Kick in the … Pants
LET’S GET THIS straight. Jeff never tries to kick his doctors in the crotch. Sometimes it just happens. In the fall of 2003 it happened during an examination with the good-natured neurologist named Brian Maddux at University Hospitals of Cleveland. Maddux was one of several “gatekeepers” Jeff had to get past if he had any hopes of being accepted for deep brain stimulation surgery.
Before the meeting Jeff glanced around the small office—exam table, X-ray machine, medical odds and ends. By far the most interesting thing in the room was the doctor.
Maddux bore little resemblance to the PermaPrest pretty boys you find on afternoon soaps. Tall, bearded, and rumpled, he had a mop of curly dark hair that seemed to go where it pleased. His tie was slightly off-center and loosened at the knot. Unlike most other doctors, he didn’t wear a lab coat.
His uniform of choice was a short-sleeved shirt, even on the coldest winter days. But what he lacked in style he more than made up for in substance. He smiled when he met Jeff and quickly apologized for not looking more doctorlike. “I always feel like such a geek in a lab coat,” he said.
Jeff liked him immediately. He tried to block his tics, or at least slow them down so he wouldn’t look like a total goober. Maddux took out a blank notebook and a pen.
“Dr. Maddux, did you receive the information that I requested from the Cleveland Clinic?” Jeff asked in a halting voice, grunting and flailing his arms as he tried to steady himself in a chair.
“Yeah, we have it,” Maddux said.
“Did you … look at it?”
“Nope. And I don’t want to.”
Jeff furrowed his brow.
“I need to get a clear picture of you,” Maddux continued. “And I need to get it from ground level.”
Jeff writhed as if trying wriggle out of a strait jacket. He was breathing hard, and streams of perspiration ran down his flushed face. As he talked, Maddux stopped him several times to hand him cooling drinks of water. “Did you … thank you,” Jeff said, stopping to sip some water. “Did you read over my notes when I met with Dr. Maciunas?”
“No,” said Maddux.
“Don’t you think you might want to?”
Maddux put his hand on Jeff’s bouncing shoulder. “Relax,” he said in a reassuring voice. “We work well as a team. I need to get the neurological picture of you. But I can’t do that if I have a biased scene in front of me.”
At Maddux’s direction Jeff moved from his chair to the exam table, a cold, padded, rectangular bench that seemed to be swathed in butcher paper. Even at Jeff’s height, his feet did not touch the ground. His tennis shoes swung nervously back and forth at the end of his long legs.
Leaning in, Maddux began the standard neurological workup. He wanted to examine Jeff’s ears and eyes with a light and have him touch his fingers to his nose. Easier said than done. Jeff flopped like a fish out of water, pulling away each time the doctor got close. For Maddux, the examination quickly became an exercise in patience. For Jeff, it was just another in a long line of embarrassing moments.
“Dr. Maddux, I am so sorry,” he said in a voice that was as contrite as it was mortified.
“Perfectly OK,” Maddux said. “I want you to feel like there�
��s nothing you need to hold back.” The words comforted Jeff. He liked everything about Dr. Maddux. He made him feel safe, like there was nothing he had to hide.
So he didn’t—and his tics exploded! As if waging a small war against the examination, the Tourette’s made him swing his arms wildly. Suddenly he was a drunken boxer, flailing and thrashing wildly, striking Maddux with a dizzying combination of blows.
Oh, God, he thought. What an impression to make on my new doctor!
Again, Maddux reassured him with an it’s-all-right smile. “If you don’t feel free to tic in my office, I can’t get a good picture of you,” he said, moving back and doing his best to ignore the unintentional onslaught.
But it was easier to do an examination when you weren’t getting pummeled like a heavy bag. Jeff agreed to sit on his hands in an effort to limit the assault.
Maddux moved to Jeff’s right side and resumed his efforts to take a look in his ear. Placing his thigh against Jeff’s knee, he physically held his head still with his left hand.
He’s a saint, Jeff thought. As badly as I’m ticking, he’s making it seem like it’s no big deal.
“Jeff,” Maddux said. “I’m going to have to hold you kind of tight to hold you still,” he said. “When you feel the pressure cooker about to blow, you let me know. In between, I’ll try to get a look.” With Jeff taking deep breaths in between heavy tics, Maddux successfully examined both ears.
“Now I want to take a look at your eyes,” he said.
Oh, this ought to be fun, Jeff thought.
Not only was he blinking about a hundred times a minute, his head was moving like a bobblehead doll’s—a six-foot-five bobblehead doll with a head the size of a bowling ball.
“Jeff,” Maddux said. “I want you to stare at a spot on the wall.”
“Which wall?” Jeff said, trying to focus through the tics.
“The dot on this wall that I’m tapping,” Maddux said, tap-tap-tapping the spot on the wall.
Jeff’s spoke in halting and broken tones as he did his best to turn his unsteady head to try to find the spot. He was sweating. Exhausted. Determined.
“OK,” he said. “I hear … you tapping.” His neck wrenched violently as his body rejected any notion of control. “I can’t …” he grunted and forced air out of his lungs loudly. “Wait,” he said. “I’ll find it.”
He finally located the spot on the wall. “Let me take a couple of deep breaths, and get some water to cool my face down,” he said.
While he breathed, Maddux approached him from the front. Unable to get close, he shone his penlight in Jeff’s eye from about a foot away. Afterward, he dimmed the lights in the room. The dark was comforting.
Maddux approached again, this time standing directly in front of Jeff in the darkened room. “Now I’m going to have to get this close to you,” he said, indicating several inches with his fingers.
HEAD BUTT! Jeff thought.
It wasn’t like he’d ever try to head butt anyone, least of all Dr. Maddux, a compassionate doctor trying to help him. But things just had a way of happening when people got too close. “Dr. Maddux,” Jeff stammered. “I’m not sure you want to do that. Because if I jerk my head I don’t want to hurt you.”
He was more than capable of hurting him. Jeff was not only tall, but bull strong. He was cut, his muscles hyperdeveloped from years of violent and constant ticking, which was better than any workout you could get in a gym. Another doctor once figured that his constant ticking was the equivalent of doing more than eighty thousand crunches in a twenty-four-hour period.
Maddux just smiled. “I’ve been kicked, hit, head butted, bitten. Honestly, as long as you don’t send me to my own emergency room, I’m OK with that.”
Jeff laughed and a bit of the tension eased from his body. He took several deep breaths as Maddux moved in slowly and got a good look at Jeff’s right eye. He moved swiftly to the left eye, trying to take advantage of a rare calm moment.
Jeff usually felt the pressure boiling inside of him whenever a huge tic was coming. Not this time. With Maddux looking in his left eye, Jeff’s swinging right leg unleashed a savage kick, hitting Maddux square in the groin. Maddux flashed an uncomfortable smile. If it hurt, he never said so.
“I got a good look,” he said, moving away gingerly. “Let’s get something to drink and sit down and talk.”
34
Testing, Testing
ONE GATEKEEPER DOWN, one to go.
To make sure Jeff was a good candidate for DBS surgery, Dr. Robert Maciunas enlisted the help of a neuropsychologist named Dr. Paula O’Grocki. Her job: put Jeff through a six-hour battery of complex psychological, gross motor, and intelligence tests.
O’Grocki needed to know what percentage of each hemisphere of his brain Jeff used. If he was either too left-brained or too right-brained, the operation might pose too great a risk or just not work. If Jeff wanted to have deep brain stimulation, this was one exam he couldn’t fail.
The tests took place in September 2003 at a University Hospitals’ satellite branch in a large space that reminded Jeff of a living room. It had two area rugs, pictures on the wall, live plants, and an L-shaped wooden desk lit by dappled sunlight.
After Jeff entered the room, Dr. O’Grocki welcomed him with a warm smile and a pleasant greeting that made him feel he was in good hands.
“Is there anything in particular in the room that bothers you in any way?” she said. “Are there any pictures you don’t like? Is the lighting OK? Too bright? Too dim?”
A scented candle sat nearby. “Can you smell the candle?” she said.
“Yes,” Jeff said, sensing a fresh fragrance that smelled like ocean mist.
“Does it smell good to you?”
“Yes.”
Jeff sat in a hard-backed plastic chair as the questions kept coming.
“Are you comfortable in the chair?” “Are you sure?” “How are you feeling today?” “Is there anything else you need?”
It was O’Grocki’s job to make sure Jeff was at ease and that absolutely nothing skewed the tests.
“I’m fine, really,” Jeff assured her.
The doctor explained the order and types of tests he would be given and the importance of each. For a psychology major like Jeff, it was fascinating. There were short- and long-term memory tests, dexterity tests, reading retention tests, fine and gross motor movement tests. She had him put pegs in holes and do logic puzzles. Some of the tests were done with both hands, others with the right or the left alone. Many were timed. In one test she asked him to name any word that began with the letter and then said “Go!”
“Uh … saw, sing, salmon, soup,” Jeff said. “Slime. Slimy. Silly. Sentry. Umm. Sanitation. S-sss-saxophone. Sick. Saturday. Singular. Sangria. Sanctimonious.” Jeff raced through the S-words in his head as his Tourette’s made him flex, punch, and kick.
The logic puzzles were next. Leaning forward in his chair, he fit all the wooden pieces together. Then he moved on to plastic and metal puzzles with abstract designs, solving each of them just as fast.
He laughed. This was one test where his OCD came in handy. It helped him recognize shapes and angles and patterns. “Done,” Jeff said, snapping the last puzzle piece into place.
“Wow!” O’Grocki said, surprised he had finished so quickly.
In a cognitive memory test, Jeff was given paper and a pencil. O’Grocki then held up a drawing with a variety of abstract designs for Jeff to study for ten seconds. Then she put the picture down.
“Ready, set, go,” she said. Jeff’s job was to recreate as much of the picture, by drawing, as he could.
In another test of both short- and long-term memory, she read Jeff a short story. An hour later, after Jeff had undergone a variety of other tests, she looked at her patient.
“Do you remember the story I read you?” she asked.
“Yes,” Jeff said.
“I’m going to ask you some basic questions that pertain to that story.” The que
stions ranged from recalling a character’s name or a destination to something more abstract, such as the moral of the story. She had him recall colors, such as a red schoolhouse a character walked by, as well as familial relationships, ages, and other details.
“It will take several weeks to fully interpret these tests, write out my report, and then discuss it with Dr. Maciunas,” O’Grocki said.
“Dr. O’Grocki,” Jeff said. “I’m at my boiling point. I have to know your initial thoughts.”
She smiled. “Not only are you going to have my full recommendation for the procedure, I couldn’t have handpicked a better candidate.” Jeff let out a huge sigh.
Several weeks later, Jeff and Debra met again with Maciunas in his office.
“Well, I’ve got some news,” he told the couple, as they held hands and hung on his every word.
“And?” Jeff said.
“We’ve got final approval,” Maciunas said. “We’re going to do the operation.”
Jeff bent over and sobbed openly into his hands, gulping his breaths in gasps.
“Thank you so much!” he said through his tears in a trembling voice.
“You’re very welcome,” Maciunas said.
Jeff’s arm shot out from the side of his body, and his leg kicked the front of Maciunas’s wooden desk so hard it made it move.
This was what he had been praying for. He still had tics, but now he had something else: hope. He blinked back tears as he stood up and embraced Maciunas. After the meeting he stopped three times to cry on his way out of the hospital.
It was another hurdle cleared. But it was far from the last or the highest one. The operation cost a quarter million dollars—and he had no insurance.
That was bad.
What was worse was that even if he did have insurance, deep brain stimulation was not FDA-approved for Tourette’s. That meant there was a good chance an insurance company would deny coverage. That wasn’t a hurdle as much as a giant stone wall. Without insurance approval, Jeff would have to find a way to raise $250,000 or work with the hospital to get grants. That could take years, if it even worked at all.
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