She flipped the brush toward Jeff, covering him from chin to shin in fresh beige paint. Jeff looked down at himself and started to laugh. Then he hoisted his roller skyward like a samurai warrior and advanced toward his wide-eyed fiancée. Debra began to squeal as the paint began to fly.
FOR A WHILE, living together was wonderful. For the most part, the medications were keeping the tics in check. Jeff and Debra were genuinely happy. Only one thing could threaten their future together: Jeff’s tics, which over the long, hot summer battered him like a hurricane. Jeff hung on valiantly, but it wasn’t enough. Before long he began losing the battle.
Debra knew she loved Jeff and wanted to marry him. But over the next few months, life with him became so hard that she began to wonder whether she could.
30
Debra’s Dilemma
JEFF’S TICS CONTINUED to worsen. They were more frequent now and had more than doubled in strength from just a few months ago. To make matters worse, new tics had emerged. Years ago he’d have just gone to the doctor for different pills, new combinations of pills, or an adjustment to the dosage of his old pills. And to be fair that had helped—at least for a while. But after nearly twenty years, after ingesting a pharmacy full of medications, he grew tired of the game, sick of well-meaning, pill-pushing doctors who offered him kind words and warmed-over platitudes wrapped in a yet another prescription label instead of any real hope.
Pills? Yeah, he had done pills. Blue pills, white pills, red pills, capsules, caplets, soft-gels, time-release tabs. Most weren’t even designed for people with Tourette’s. They were tranquilizers, old blood pressure medications, and antipsychotic drugs adapted to some new, never-designed-for role. But what could he do? That’s what the doctors recommended. So day after day that’s what he did: throw down the dope. Swallow and hope.
Truth is, even when the pills worked, they didn’t work that well. And now they weren’t working at all. Alone against the growing evil inside of him, he tried every way imaginable to stay still—relaxation, deep-breathing exercises, meditation, prayer, primal screams …
It didn’t matter. The evil was winning. It assumed control over every part of his body like some sort of satanic puppet master. If it was just one that was twitching—his head, or his arm—he could adjust or take measures to control it. But these tics were too frequent and too strong. Refusing to be contained, they swept across his body like a brush fire, affecting his arms, legs, wrists, ankles, torso, head, neck, eyes, and even his voice. They made him grunt and grimace. They were there in the way he stood and the way he sat. They affected they way he talked, the way he breathed. They even followed him into bed at night, blanketing him with sharp spasms that contorted his body into painful positions, making it next to impossible to quiet his mind enough to fall asleep.
Why was this happening to him? And why didn’t it ever seem to happen to anybody else? Lord knows there were all sorts of jerks who deserved to suffer like this. Not him. And certainly not Debra or the kids.
The more he thought about it, the more troubling it became. He wanted so badly to be the man Debra deserved. He wanted to take her out to eat, to go dancing, have a good time. He wanted to laugh and run, to shoot hoops with Bonnie and Mike, to watch movies and play games like he’d been able to just months ago.
The evil wouldn’t hear of it. It attacked him like an invisible army, leaving him exhausted, angry, and despondent. Bedridden and largely helpless against its onslaught, he depended more and more on Debra, who had gone from gracious girlfriend to nightly nursemaid.
How did it get this way? Deb wondered. This bad? Their home had become a prison of work and self-sacrifice to the all-powerful Tourettan gods. Working full time in the sales department of the hypercompetitive Sheraton Cleveland City Center Hotel was hard enough. But it was nothing compared to the work that remained after Debra got home.
Jeff was little more than an invalid. Debra tried to remember the good times, the times he made her laugh when no one else could, the times he did things that were so sweet it made her cry, the times in the still of the night they told each other things that no one else knew.
She remembered the love in his eyes when he had proposed, the way he complimented her, the way he loved Bonnie and Mike as his own, and that big, broad, wonderful smile.
God he was handsome. And smart. And kind. And funny. But like Debra, he was falling apart. He couldn’t dress himself, couldn’t eat by himself, couldn’t always walk himself to the bathroom, or up to bed, without help.
If that was all there was to taking care of him, maybe she could handle it. But there was so much more. She couldn’t watch the news in the morning—or the evening—because it would fire up Jeff’s tics. She couldn’t talk to him about their financial situation because it would fire up his tics. They couldn’t go to movies anymore because it would fire up his tics. Dinner had to be on the table every night at the same time, or it would fire up his tics. And the house had to be spotless—scrubbed, straightened, and orderly—or his obsessive-compulsive disorder would explode, which would in turn fire up his tics.
And finally, the house had to be quiet. No extraneous noise. Nothing!
Jeff couldn’t stand it. Deb survived second by second. The only thing she could allow herself to think about was what was happening at work or with the kids. She couldn’t concern herself too much with what was happening to Jeff or she would have a nervous breakdown.
It was the worst time in their relationship.
One night was harder than all the others. Late in the evening, after Bonnie and Mike had gone to bed, it was Jeff’s turn. Debra massaged his back, his neck, his arms and legs, sponging away the sweat and dabbing him with ice bags to cool him down in the summer heat. With enough time and attention, he would finally quiet down enough to sleep out of sheer exhaustion, his body physically unable to sustain the tics that still raged inside.
Well after midnight, Debra finally got something she wanted: an hour or so for herself. She walked downstairs, sunk into the couch, and stared blankly into the inky blackness. And then, slowly, silently, she began to cry.
She loved Jeff and wanted a life with him. And she could never leave him, especially in a time of need. But increasingly she wondered whether she could live with the pressure his worsening tics continued to place on her.
She couldn’t go forward. She couldn’t go back. And she couldn’t keep going like she was. As days blurred into nights, and nights into days, the workload rarely ceased. Debra had always been strong. But now even her resolve was fading. With no other option, she turned to God.
“Why is this happening?” she demanded, begging for help one moment, yelling the next. Deep inside, she feared the situation would never change. This would be her life with Jeff. This, or worse. For fifty years.
“Oh, God!” The world began closing in on her.
There, in the darkness, in the desperation and the pain, a horrible but fleeting thought flashed through her mind. Maybe, she thought, it would be better if I just went upstairs and killed him.
“NO!” she said immediately, brushing it from her mind like a bad dream. What was she thinking? She could never do that, no matter how bad he got. She loved him too much.
But then what could she do?
Crying, she burrowed deeper into the couch and pulled her grandfather’s robe tight. “Grandma and Grandpa,” she said in a small voice, “you’ve got to help me. You’ve got to show me that everything is going to be OK.”
Just then she began to smell the sweet smoke of her grandfather’s pipe tobacco and feel the hands of her grandmother softly stroking her hair.
Her grandparents had passed away years ago.
31
Learn to Live with Your Pain
“HEY! YOU’RE NOT allowed back there!” The secretary glared at the interloper. Jeff didn’t care. He was on a mission, and nobody was going to stop him. Walking fast, he blew past the woman into the empty office of one of the Cleveland Clinic’s most prom
inent neurosurgeons.
“You can’t just barge in there like that!” she said.
“Nah, that’s good,” Jeff said. “I’m fine.” He placed a letter in the center of the surgeon’s desk. Then he took a yellow Post-it Note and wrote “Urgent! Read Now!!!” in red pen, and stuck it on top of the letter. Not that it would do any good. He just didn’t know what else to do.
For thirty years Jeff had been respectful and played by the rules. That had gotten him nowhere. Day after day he’d been told that a neurosurgeon would call him back. They never did.
The time for rule following was over. This time it was “Get out of my way, I’m coming through!”
The severity of Jeff’s tics had been varying wildly over the last few months. Sometimes he could walk and talk, other days he was bedridden and functionally mute. Desperate to find an answer, he had researched possible solutions and settled on deep brain stimulation as the most promising option. He asked his neurologist about it, but there was a problem. As he aged he had to move from Dr. Erenberg—a pediatric neurologist whom he loved—to an adult neurologist whom he didn’t. His new doctor consistently refused to give him a referral to see a neurosurgeon. He only suggested more pills, or different pills—which 163 was a problem.
The pills weren’t working anymore.
Finally, in August 2003, he scheduled a special meeting with his neurologist. The doctor, in his mid-sixties with salt-and-pepper hair, sat ° at his desk quietly taking notes. “So how are we doing today?” he said, using his stock phrase.
The man never leaned forward. He would always lean backward and tilt his notes toward himself. The way Jeff saw it, he dismissed Jeff’s concerns as easily as you’d brush a fly off your shoulders. He was smart, Jeff felt, but empathetically bankrupt.
In a calm but determined voice, as his tics caused him to jerk and flail, Jeff asked for—then insisted on—a referral to see a neurosurgeon.
“Jeff,” his exasperated doctor said, looking up from his chart. “I won’t write you a referral simply because,” he paused for emphasis, “you wouldn’t be a person they’d accept.”
Jeff knew why. It was his suicide attempt. One stupid decision and now doctors had made up their mind about him. He had been medically stereotyped. It was as if he had been wrapped with yellow police tape that read: CAUTION. PSYCH PATIENT. APPROACH AT YOUR OWN RISK.
He felt labeled, trapped. He wasn’t crazy, just in pain. Couldn’t they understand that? But the more desperate he became, the crazier he looked. Turned down for the referral yet again, the conversation grew heated.
Finally, his doctor had had enough. “You know what, Jeff,” he said. “I don’t know what else to do for you. We’ve tried the therapies, we’ve tried the medicines, and we’ve tried different combinations of medicines and therapies.” He did everything but throw up his hands.
Jeff didn’t know what to think. He was giving up on him? Was that it? He felt a deep emptiness inside.
“So you’re telling me, Doctor, that you’re out of ideas for me?” he said. “That I’m out of options?” He stared at the suddenly impotent healer with shocked sadness. “So what am I supposed to do now?” he asked.
His doctor pursed his lips for several seconds. “I’m sorry,” he said. “You’ll just … have to learn to live with your pain.”
Jeff pulled back.
Live with his pain? That’s the one thing he couldn’t do. Wouldn’t do!
Jeff got up as the doctor closed his chart. “Thanks for your time, Doc,” he said curtly, barely bothering to hide his anger. Ticked, he rode the elevator to the lobby. Stopping at a pay phone, he looked up the number for the Cleveland Clinic’s archrival—University Hospitals—and called it. Located less than five miles from each other, the two hospitals competed with each other for grant money and reputation.
A receptionist put him through to a woman named Arlene Brown, secretary for Dr. Robert Maciunas. “Department of Neurosurgery, may I help you?” she said in a caring voice.
“Hi, my name is Jeff Matovic,” Jeff said. “Look, Arlene. I am having a really hard time with my Tourette Syndrome. I know you know what that is.”
“Yes,” she said. “I’m very familiar with Tourette’s.”
“Well, I am in dire straits. I am currently at the Cleveland Clinic. I’ve been a patient here since the early ’80s, and I have needs that can’t be met here. They are unwilling to cooperate on any basis. I am possibly seeking some help looking for a surgery technique. Does your surgeon perform deep brain stimulation?”
“Yes,” Brown said.
“When can I see him?”
Jeff wasn’t expecting much. His mind imagined a worst-case scenario. Uhh, we’re pretty booked up for the next five years, so …
The real response was better than he could have dreamed. “Does two weeks from now on Monday sound good to you?”
Jeff’s eyes grew large. He started breathing faster as he shifted in his seat. Had he heard right?
“Two weeks?” he said.
“Yes sir.”
“You bet!” he said, circling the date in red in his planner. “I’ll be there! Thank you!”
He let the name roll around in his mind. “Ma-soon-us” he said, repeating Arlene Brown’s pronunciation. “Dr. Robert Ma-soon-us.”
He turned around and took one final look at the lobby of the Cleveland Clinic. He had been a patient there for twenty years. But now it was over. In his mind he was wiping the slate clean, starting over. He couldn’t believe it. Finally he was going to see a neurosurgeon! Finally he was going to ask for deep brain stimulation! Finally his years of research just might pay off.
There was just one problem: Dr. Maciunas could still say no.
32
Take a Chance on Me
HOURS SEEMED LIKE days. As he stared at his black leather planner with the date of his meeting circled in red, Jeff wished he could take a sleeping pill and wake up two weeks later in Dr. Maciunas’s office.
He calculated the time remaining. Two weeks. Fourteen days. Three hundred thirty-six hours. Twenty thousand one hundred and sixty minutes.
Do I have twenty thousand minutes to my death? he wondered. He swallowed hard.
Even as Jeff prepared a presentation to persuade Dr. Maciunas to say yes, he researched ways to kill himself in case the doctor said no. He couldn’t take another rejection. This was it. Last chance.
Jeff didn’t know what Maciunas would say. But he did know he couldn’t keep living like this. Tourette’s possessed his body like an evil spirit, forcing his arms to stick out, zombielike. The vicious ticking pulled muscles and tendons, cracked joints and bones. The disorder completely engulfed him. He had lost himself. Subsumed into the tics, he ceased being Jeff Matovic and had become his Tourette’s.
Everything hurt. He hadn’t had a good night’s sleep in more than a month. And no matter what he did, he couldn’t stay still. Life consisted of surviving his tics. For hours he’d sit with his back against the wall and slip his palm behind his head. When people called, Debra held the phone far away so he wouldn’t smash his head against it—or her. At his worst he had to lie in bed with pillows lining each side so he wouldn’t fall. If he had to go somewhere, he had to crawl.
This wasn’t life—it was torture. And one way or another, he resolved to stop it.
With great difficulty, he marshaled his resolve to prepare for the meeting of his life. Exhausted and with bloodshot eyes, he studied Maciunas’s credentials and managed to fill a half-inch black binder with research he had done over the last three years on Tourette’s and deep brain stimulation. He included colorful PET scans of the brains of people with Tourette’s, a description of his own tics, and a letter giving Maciunas permission to perform DBS that held him blameless, regardless of the outcome.
At the same time, he prepared his contingency plan, which consisted of the following three ways to end his life:
1. Lie down on nearby train tracks at night.
2. Take an ov
erdose of mixed medications and household poisons.
3. Flood the garage with carbon monoxide from a running car.
The train tracks seemed like the best choice. He checked schedules to find out when trains crossed nearby tracks after dark. He envisioned how it would go. Dressed in black jeans, black hiking boots, and a black three-quarter-length leather jacket with matching leather gloves, he would lie on his stomach with his body perpendicular to the tracks. Then he would say his final prayers.
God, please forgive me for the action I am about to take. I hope you realize I have tried everything with the people and resources that you’ve provided me. I have loved, I have lived, and I have conquered more things than others can imagine in two lifetimes. I hope that you know and understand my reasons. Please let my family understand that it’s too much for a human being to bear. I just want to be with you, God, as a guardian angel for my family and other families afflicted with other such diseases.
After lying down on the tracks he’d blast Guns N’ Roses so loudly through his headphones he couldn’t hear anything else. Then he’d turn his head away from the lights, rest his head on his extended arms, and wait for the train.
That was the easy part. The hard part would be looking his parents in the eye before he did it.
How can I tell them I love them, give them and a kiss and hug, and walk away knowing the next time they’re going to see me it will be in a casket? he thought. How do I thank them for all that they have done for me? For raising me well and giving me a fun childhood filled with memories? How do I do that to a mom and dad who not only told me that they loved me but showed me every day? How do I do that to my only brother, who has been my role model, my confidant, and right-hand man and bestfriend?
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