Ticked

by James A. Fussell

  To kick off the season, the school planned an all-school celebration in the gym at midnight featuring the members of the basketball team performing skits. One of the highlights of the celebration that year was a dunk contest featuring five students, including Jeff, who had tried out and earned a spot. Shortly before midnight on the night of the big rally, Jeff warmed up on the floor of the gym as the band played fight songs and students got ready for the party.

  “Hey, Matovic,” yelled one of the John Carroll players, “show me what you got.”

  Finally, Jeff thought. Here was a chance to prove that he was more than some spaz who twitched like a puppet on a string. Show you what I got? he thought. Damn right. The lanky right-hander eyed the basket and tossed the ball underhanded high off the left side of the glass backboard as he sprinted toward the basket. He leapt high in the air and reached his right hand far behind him to cup the ball. He twisted his body in the air and eyed the rim for a windmill dunk.

  It would have been perfect if it hadn’t been for one thing. Because of his battles with his tics, Jeff had a force inside of him greater than anyone knew, a force borne of determination, frustration, and raw, naked anger. When he slammed the ball through the hoop he was symbolically striking back against years of pain and embarrassment. Unfortunately, his years of pent-up rage were a little more than the hoop could handle. With a loud crack, the backboard exploded into a thousand pieces as if it had been blasted with a shotgun. When Jeff landed on the court, rim in hand, thousands of pieces of shattered backboard rained on him like a Plexiglas shower.

  The crowd exploded. Seconds later Jeff heard Paul shouting from the upper level. “Oh, hell yes! Hell yes! That’s my boy!”

  Mortified, Jeff looked around to see if he was in trouble. But all he could see was the crowd, exploding in cheers and spilling onto the court to grab pieces of the shattered backboard and stuff them in their pockets as souvenirs. He hadn’t meant to break the backboard. But since he had, for one shining moment he was the coolest guy on campus.

  The evening’s celebration had to be postponed several days until the backboard could be replaced. The event even made it into a brief on the sports page of the Cleveland Plain Dealer.

  Jeff’s backboard-shattering dunk recalled similar feats by Darryl Dawkins, a large and intimidating dunking machine who played for the Philadelphia 76ers. Dawkins was affectionately nicknamed Chocolate Thunder. After Jeff broke John Carroll’s backboard, friends dubbed him Vanilla Thunder.

  IT WASN’T EASY, but Jeff finished his four years at John Carroll. For Jeff, graduating from college with a degree in psychology felt like slaying a giant with a slingshot. In cap and gown he had defeated his Tourette’s and done something none of the experts thought possible.

  Graduation was a reverent occasion. Before the graduates walked across the stage, the president of the university requested that audience members hold their applause until all students had been announced.

  Right.

  Jeff beamed as he walked across the stage. Just before he reached for his diploma, a lone voice sliced through the silence and echoed through the quad.

  “Way to go, Jeff!” his brother Steve yelled.

  Jeff smiled. The crowd began to clap. Later, in a moment his mother captured in a photo, his father closed his eyes and enfolded his youngest son in a warm embrace after the graduation ceremony.

  “Dad,” Jeff whispered. “This is as much for you as it is for me.”

  22

  Deep Brain Stimulation

  BRAIN CELLS, CALLED neurons, communicate with one another through a series of electrical impulses. In a properly functioning brain this electrical communication is in harmony, like a well-conducted orchestra. In brains with movement disorders that orchestra may be out of tune or off-tempo. Deep brain stimulation (DBS) may affect the tune and tempo, though doctors don’t quite know why or how. In DBS, a battery implanted in the chest delivers steady pulses of electricity to a targeted area of the brain. The current alters dysfunctional electrical activity in that area. Specialists adjust the speed, strength, and length of the electrical pulses in an attempt to produce a desired result. Accepted as a way of quelling tremors that can afflict people with Parkinson’s disease, dystonia, and essential tremor, DBS has shown promise for improving other ailments, including chronic pain and depression.

  AFTER COLLEGE, JEFF took a series of jobs—including one in Boston working with autistic children—that never seemed to work out. As he fought his tics, he suffered setbacks and bouts with depression. When he returned to Cleveland, he just wanted to find a way to be happy. He began dating a woman named Maxine. She was kind and treated him nicely. Maybe that was what would make him happy.

  They married in 1998. But they were very young and they didn’t know each other as well as they should have. Despite their best efforts, the marriage failed. Several years later, they had it annulled. But while she ultimately wasn’t right for Jeff, Maxine cared greatly for him and helped start the research that ultimately led him to the operating table.

  Another person who helped was a man named Ed Cwalinski. Jeff had never heard that name until he watched an episode of ABC’s 20/20 in August 2001. But after he heard it, he couldn’t get it out of his head. Soon there was something else he couldn’t get out of his head—the possibility that deep brain stimulation, or DBS, could get rid of his tics.

  The 20/20 story showed how Cwalinski had undergone the operation to treat a severe case of dystonia that had curved his spine into the shape of the letter C. After researching the surgery on the Internet, Jeff found that DBS was approved for several movement disorders but not for Tourette’s. Jeff didn’t see why it couldn’t be. It made sense. Dystonia was a movement disorder and so was Tourette’s. Why couldn’t DBS be the answer he was looking for?

  From 2001 through January 2003, the surgery became Jeff’s greatest obsession—and his greatest hope. He requested information by mail and over the phone from the National Institutes of Health, Johns Hopkins, and mental health institutions throughout the world. While he didn’t get many returned calls, he did receive a lot of mail—boxes full—explaining the operation. He also researched his own condition further as he continued searching for a way to connect DBS to Tourette Syndrome. There didn’t seem to be any.

  All you need is one, he told himself. Keep looking!

  For Jeff, trying to search the Internet while dozens of powerful tics wrenched his body this way and that was like trying to play the piano on a bucking bronco. Worse, when his fingers hit the wrong keys, it could send him to some “interesting” places. Once Google took him to a “big and busty” porn site, where an unattractive older woman with enormous, exposed breasts was smiling back at him in a trashy sort of way.

  “Oh, God, no,” Jeff said. “I don’t want to see that!”

  Sometimes Jeff would call his parents to tell them what interesting new sites he had landed on with his tics. He told them about the porn site.

  “Oh, Jeff, that’s nasty!” his mother said.

  Then, following a silence, his father said, “What’s that address again? I’ve got a pencil.”

  “Jim!” he heard his mother say.

  Jeff did his research in the bedroom of a small apartment on the third floor of a large, white apartment building in the Cleveland suburb of Brooklyn, Ohio. Several boxes sat on the floor. On the outside of two boxes he had written MAIL SENT and MAIL RECEIVED. Another box was marked INTERNET RESEARCH and contained more than fifty manila folders on research pertaining to DBS, doctors who performed it around the world, his own condition, and possible links. That box was so packed with files he actually had to duct tape it in two different places because it was bursting at the seams. He also had another box labeled CALL BACK INFO FROM DOCTORS/CONTACTS. That was the one box he wished were full.

  It was virtually empty.

  He sat in a small bedroom at a light-colored wooden desk, staring at his Compaq PC. To the right sat a black desk lamp and a blue John Carroll
coffee mug filled with pens and highlighters. In front of the mug a notebook tracked his research. Along the border of his monitor were printed quotations. One read “GOING AROUND IT, OVER IT, OR THROUGH IT”—WALTER PAYTON. On the left side of his monitor he had taped a photocopied picture from the DVD case of the movie Rocky IV. It was a picture of the scene, in round two, where Rocky had cut Ivan Drago, the nearly invincible Russian fighter.

  He kept a hand towel on the right hand side of the desk that he often chilled in the freezer to cool himself off after prolonged ticking heated him up. Sometimes he would freeze a beach towel and drape it over the back of his chair. Most times he sat at the desk in basketball shorts with no shirt. Two fans—an oscillating fan on his desk and a large, square floor fan—blew air directly on him.

  One of the things he treasured the most was an enlarged prayer card of St. Dymphna, the patron saint of mental diseases, hanging on his wall to the right of his desk. Many nights he prayed to St. Dymphna that DBS might be his answer. But first he’d have to find out whether he was even a candidate for the surgery. That information was difficult to find. Finally he found a site from a major US hospital that confirmed that—at least according to his symptoms and his history—he could be. He began calling hospital neurology departments directly, asking to speak to surgeons about the possibility of performing the operation on him. He tried not to get discouraged. But it was hard. Over and over the answer was the same: “We don’t do deep brain stimulation for Tourette’s.”

  23

  Cemetery Man

  JEFF AND I talked for hours at John Carroll. More important, we bonded. After shooting hoops at the gym and getting some lunch, Jeff took me to see an award the school had given him for courage. Turns out the Campion Shield for Heroism award had only been given twice before in the hundred-year history of the school. I took a picture of it in its glass case.

  “Impressive!” I said. “You’re a friggin’ hero, man.”

  Jeff posed proudly, chest out, as if he were a superhero. I swung my camera around and pretended to take a shot before dropping it to my side.

  “You wish,” I said. “But seriously. That is very cool.”

  At the library we resumed our interview. He shared with me, and I with him, personal details of our lives and our struggles that we had never told anyone else. We cried together, and for the first time he called me “brother.”

  Most of our interview was happy, but I knew rough patches lay ahead. Jeff pulled out a journal and read intensely personal poems he had written in the depths of despair. They talked about death, betrayal, and expressed anger in vile and vulgar ways. Many of the bitter and hate-filled musings were intensely shocking and out of character for the Jeff I knew, and they made me uncomfortable. We knew we could have included the worst of them in this book for shock value. But that wouldn’t have been right. Tame by comparison, this one gives but a small glimpse into the confusion, anger, and pain that Tourette’s can cause.

  Directionless and Powerless by a Man Named Jeffrey Paul Matovic, Unknown to Himself

  I don’t want to feel anymore. I don’t want to hear the constant noise inside my head. I don’t want to feel lost anymore. I don’t want to feel anything. I feel so mixed up. I am so lost in a world that I don’t understand.

  Why can’t I know myself? Why can’t I just be me? Hell is on the earth right now as I live in a confused, directionless, ever changing body. Hell is the voice in my head that shouts all the time and just won’t shut up. Hell is here. Hell is in me. I am consumed. Why try again? Why feel hope when time itself has proven that there’s no place for me?

  Why do I push on just to feel more pain? What am I, crazy?

  Better yet, please answer this. Who am I? And what the hell am I doing? In the words of the rapper Tupac Shakur, “I believe hell is coming back to this hopeless life, body and soul reincarnated.”

  Screw not knowing. I don’t want to know anymore. Screw success, for I have no knowledge of what it is. Forget hope, ’cause hope just lets you down. Forget God. He’s a wanna-be in a world he knows nothing about. And forget potential. Because without a compass to guide me, what’s the point?

  We continued talking about his darker times, including the night he walked in a cemetery after midnight and talked to the graves.

  “Stop,” I said, digging out my digital recorder. “I want to make sure I get this.” I laid the recorder on the table and pressed the red record button.

  It was all very ghoulish, but then I knew what kind of demons could make somebody want to do such a thing. I waggled my tongue outside my mouth, and twisted my neck until it cracked like dry twigs under a truck tire, and pressure pumped up the front of my head like an air hose.

  “You need more time?” Jeff asked.

  “What?” I said, hitting pause.

  “Are you up for this?”

  “Yeah, I’m good,” I said, balling my hand into a fist and whacking the front of my forehead twice in a row. “Let’s just go on.”

  Jeff balled his hand into a fist and imitated me, whacking his forehead twice, as I had.

  “That’s good,” he said. “I like that one.”

  “Oh, you like that?” I said.

  “Yeah.”

  “Well that’s my move,” I said. “Get your own.”

  Jeff smiled, then threw a black pen cap at me.

  “Hey,” I said, putting up a warning finger. “No assaulting the author. I can make you look any way I want.”

  “Oooh,” Jeff said, smiling and throwing up his hands as if to say “I’m soo scared.”

  We sat at a small table in a room with glass walls in the John Carroll library. I shook my head, then glanced over my shoulder to see if anyone had noticed.

  Dork alert! I thought. Spaz under glass!

  It wasn’t as if Jeff cared what I did. There wasn’t another person on the planet who understood what was going on with my body better than he did. When it came to tics, he had done everything I had done, and more. But not any longer. And that’s why we were sitting there. Jeff was a miracle man—my personal hero—the bravest person I had ever met.

  “Ow,” I said, grabbing the back of my neck.

  “You’re sure you want to continue?” he said. “I mean, you know I understand.”

  “Yeah, yeah, you’re a freakin’ six-foot-five Mother Teresa,” I said, stretching. “I’ll be fine. Now you can’t just leave me in the cemetery. What was it, again? You were talking to dead people?”

  In a flash the searing pain in my neck suddenly shot up the back of my skull. I interlaced the fingers of both hands and put them on top of my head and pushed down as hard as I could as if trying to keep it from boring its way through the top my head. I grimaced and closed my eyes. When I opened them I saw Jeff bending forward and staring at me.

  “What?” I said, making a circular motion with my hand. “Go! Go!”

  “All right,” he said. “As long as you promise if it gets too much for you to handle, you’ll let me know. Deal?”

  I saluted. “Aye, aye, Cap’n.”

  He threw the pen cap at me again and leaned in closer with an I’m-not-kidding look. “Seriously, Jim.”

  I shook, then grabbed my long, silver Sony recorder and aimed it at him like a gun. “Talk,” I ordered.

  He pursed his lips and scooted forward in his chair. “All right, but remember, you asked for it,” he said, stretching his arms and arching his back.

  It was 11:00 AM. We’d been talking since 7:30. When he stretched, unfolding in every direction like a Swiss Army knife, it struck me how large he really was. He was supersized from his hands and his fingers to his head and torso. Dressed in a blue Nike running suit, he looked strong, tall, and lean with crazy long arms and legs. His bowling-ball-black hair and strong chin framed large brown eyes and a big, goofy Up-with-People smile. Fifteen years my junior, he looked like I used to feel—young, vibrant, and like he could run for an hour without breaking a sweat.

  I fought back a yawn
as he started to talk. “I’m listening,” I said, waving off the yawn. “Just go.”

  “OK,” he said. He looked at me, then looked down. Ten seconds went by before he took a breath and started talking again. “It was 2002,” he said. “A very low moment in my life.”

  As he talked, I found myself in that cemetery with him. “I was driving my green Dodge Spirit that my father had given me. I took that car at night on a fall evening. Fall is my least favorite season because it reminds me of very depressing times. It’s gray and everything seems dull. I took a drive to Lakeview Cemetery, which is located right down Mayfield Road in Cleveland, right before you get to Little Italy, about ten minutes from University Hospitals. It’s a very old and historic cemetery. Some presidents are buried there. I went alone, without telling anyone I was leaving. I walked through the cemetery, and I walked at a very slow pace. I was wearing a black pair of shiny running pants and a red running coat with black sleeves and a zip-up collar and Adidas high-tops. And as I walked through this cemetery I was talking to the graves.”

  “To the headstones?” I asked.

  “I was talking to the dead,” Jeff said. “I was talking to them and trying to find some way to find answers either through myself, within myself, or—hell—if the dead would speak to me, I would have loved to hear it. And as I was talking I would pass by tombs and look at them. I would pay particular attention to the dates of people who died very young. And when I found a date that was around my age, or two or three years older or younger than I was, I was particularly fond of that grave because I didn’t want to be in this world anymore. I was jealous that name said Jones or Smith ’cause I wanted it to say Matovic. I wanted it to say 1973–2002, JEFFREY P. MATOVIC. “

  He prayed he could switch places with them. It made sense. They could still be enjoying their lives, and he could escape his hell on earth.