Ticked

by James A. Fussell

  I couldn’t ask Jeff so I called Debra, who then called Jeff’s dad. “Thirty-four would be a good number, because on March 4, 2004, we ‘marched forth’ into a new life!” he said, referring to the day Jeff’s batteries were turned on. Thirty-four also was the number of Jeff’s favorite sports hero—the late Walter Payton, Hall of Fame running back for the Chicago Bears.

  It was perfect. Jeff was going to flip!

  Jeff and Debra flew to Kansas City on Monday, July 24. He called me when he got into town.

  I had some fun with him. “Mr. Matovic,” I said. “I’m a scout for the Kansas City Royals. I hear you’re a lanky fireballer who’s going to be throwing out the first pitch tonight. I want you to keep warm. We may just need you later in the game.” He laughed.

  The first night Assurant honored him with a dinner. About twenty people attended. We all ate at Pierpont’s, an upscale steak restaurant inside Kansas City’s historic Union Station. The place was fancy and impressive, with dark wood and a huge wine storage rack. It was so dimly lit I could hardly see the menu. Jeff wore a dark suit, and Debra a pretty dress.

  Steve Palermo, a deeply tan, highly regarded former Major League Baseball umpire and bona fide hero who was shot and paralyzed in 1991 attempting to foil a robbery, commanded the room with confidence and charisma. But with Palermo as his biggest cheerleader, Jeff became the star of the dinner, answering questions and enthralling everyone with stories from his life.

  Next came the award ceremony, during which Jeff received the award and spoke in front of a thousand people in a downtown banquet hall.

  Steve Palermo put it best: “Through this award,” he said, “Jeff Matovic will serve as a beacon of hope to others fighting to overcome obstacles, and as an example to all that obstacles need not be insurmountable.”

  Jeff beamed as he accepted the award and received his surprise—an official number 34 Royals jersey with his name on the back which he slipped into in front of the cheering crowd.

  Moments earlier, he had given his speech:

  The Shining Star of Perseverance Award means a great deal to me, for its representation transcends many different horizons and crosses countless boundaries. One may look at this award as a token of appreciation for all I have been fortunate enough to endure and fight for. In reality, your presence here today, along with my loving wife, Debra, is a true representation of how I view this great honor. My new lease on life takes place not in the past on February 9, when micro-sized electrodes were placed deep within my brain. Nor was it February 20, 2004, the day that doctors Robert Maciunas and Brian Maddux provided me with a gift nothing short of miraculous. The true miracle of my deep brain stimulation surgery takes place each and every day when I awaken to stillness and a world of opportunity that I have been dreaming of since the age of three.

  Since the beauty of stillness embraced my body on March 4, 2004, I have come to realize numerous facts that do not lie or deceive, but rather deposit truth where truth is needed most. Truth cannot be spotted on the exterior of a person, in a crowded room, or even where best of friends sit and reminisce about times gone by. I believe that we live truth—day in and day out. Thesauruses provide alternate words to tell us about truth—reality, actuality, unvarnished, unmasked, authentic, genuine, and sincere. One may ask what I found common among all these meanings that assist me in my journey. The answer lies not in a riddle or puzzle, nor in a chest with a combination lock. What many people take for granted, as I did prior to March 4, is the fact that if we look hard enough, truth stares us right in the eye. Truth is a governing principle of life. Much like a compass will show us true north, truth will guide our hearts, minds, and souls to where we need to be, not where we want to be.

  Tourette Syndrome placed many obstacles in my way throughout the last thirty-three years. Some of these barriers I found too solid to break; others were easier, while others were worse than I could imagine. How I got through the labyrinth of confusion only to arrive in the care of a wonderful surgical team at the University Hospitals of Cleveland often baffles me. However, through this thirty-three-year battle, one truth that I held certain and dear to my heart, as I do now, is a relentless pursuit to be me. Not rich, athletically gifted, an A-plus student, nor an owner of priceless gold treasures, I wanted only to release the gifts God gave me that were trapped inside of a dark cage with no known key.

  Many of you may have heard of the late, great NFL running back Walter Payton. I grew up admiring Walter for his incredible athletic moves, blazing speed, and heroic agility when the game was on the line. But what I always will remember about this man are the following: One, that he was told that he would never have a shot at being drafted into the NFL due to his five-foot-ten, slender frame; two, he was not going to make it big because he was not from a university that received weekly national attention; three, it was not in the cards for him to even begin to compete in the National Football League because his overall presence was not intimidating and fearful.

  But what I saw in Walter was what I began to see in myself: an untiring and unwavering work ethic, with resilience to obstacles and a passion to succeed. Unyielding willpower and faith were the attributes that made him one of the best running backs in the history of the National Football League. His family surrounded him and embraced him for who he was: his size, abilities, and areas for opportunity.

  Friends helped Walter to make the most out of each day. Although I will never possess his vision for heroic running on the football field, we do share a very common and unbreakable thread. As Walter used to say, “I will not be held back by lack of size or strength. I will conquer my enemies on and off the field by running around them, over them, or by plowing straight through them.” His authentic belief in his own abilities was the component that made him a man of integrity on and off the field.

  Nobody can ever measure the heart of a champion. And for Walter’s teachings, even though he didn’t know I was watching and taking mental notes, I am eternally grateful. For these are the principles that guided me to tackle my own demons and eventually find that hidden key to unlock the potential inside.

  When faced with the adversity and stress of everyday life, I hope to be a beacon of light, hope, and strength when individuals and families cannot find the path they seek. My deep brain stimulation surgery has yielded wonderful results for my family and I. More important, I hope that the recognition that this procedure has brought to Tourette Syndrome and neurological research will invoke continued belief and encouragement. With our combined efforts, we can make Tourette Syndrome a household phrase that is understood, respected, and pursued with medical research.

  Although I guard and value the stillness of life, the graduate and doctoral program within which I have reengaged, and the opportunities to soon enter the corporate world, these are not at the heart of what life is all about.

  Life is special now because of the ability to walk through a mall without laughing gestures being thrown my way. Life is the morning calls of “Daddy” coming from my twenty-month-old child, Christopher, who, without the miracle of this surgery, would not be here today. Life is the ability to look someone in the eye and converse and then calmly extend my hand to shake theirs. Life is about being able to drink out of a glass instead of a plastic sipper cup. Life is my family—my wife, Debra; my daughter, Bonnie; and sons, Michael and Christopher.

  My life is surrounded by family and friends who have believed in the same dream that has brought me to be with you today. Without the tireless efforts and sacrifices from my parents, Jim and Patty; and brother, Steve; and his wife, Lisa, life would not have had the same meaning. They have researched Tourette Syndrome, driven to countless doctor appointments, cried with me, and tried to find some meaning among all the madness this disorder brings. I will forever be indebted to them for sacrificing themselves for the betterment of me. Many friends have also shared my belief and walked beside me. Jay, Paul, Joe, and our very good friends who are present with us today, Jim and Susan Fussell,
have given more of themselves than they realize.

  Life is astoundingly present, colorful, and exciting for someone like myself who has sought what others view as “regular, routine, and simple.” Through the will to persevere and combat obstacles that invaded my life, I am filled with joy as individuals worldwide have called, e-mailed, and sent letters to thank my family and I for the hope we have given. Calls received from Canada, the UK, Australia, Germany, South Africa, and the United States have given me strength to keep fighting for the insightful research that is due for Tourette Syndrome.

  With ambitious technique, my life goals are now steered in two specific directions: [first] to provide support and education to individuals and families suffering from Tourette Syndrome. This support comes in the form of public speaking at universities, clinics, support-group gatherings, and phone conversations. The second direction is the attainment of my master’s degree in psychology, where I am currently specializing in the counseling and treatment of mental health disorders with concentrations in pediatric and family Tourette Syndrome and stress management techniques. With these two goals lining my new life path, I have found what I know to be a virtuous truth and a welcome opportunity to serve others.

  Thus far, my public speaking has provided me with an opportunity to share similarities and differences with other members of the community with various disorders. These interactions not only provide strength and encouragement for me, but also assist in the feedback to others who, much like myself, have found particular struggles along the path of life. Along with greater Kansas City and surrounding communities, the world seeks a better quality of life for those that suffer from any disability.

  Regardless of symptoms, diagnosis, or prognosis, we all share a common lifeline and a common bond. We are all a part of a unique and honorable community in which we are free to live—free to live our dreams, regardless of what others say or think. We are bound by nothing. We are free to imagine. Exploration in diversity is a shared strength as we lift each other up and together celebrate the Shining Star of Perseverance award.

  Oliver Wendell Holmes [once said], “A moment’s insight is sometimes worth a life’s experience.” I have found truth in this statement and furthermore have gained a sense of being, regardless of what the world tells us we should be. Like Walter Payton, I chose to run around, through, or over the obstacles that I faced. I remained determined and focused to let my commitment shine forth to eventually conquer Tourette Syndrome. My refusal to accept physical and mental limitations has not only brought my family and I a new lease on life and an extraordinary sense of group accomplishment, but has given me direction and purpose.

  To win any war, even those within ourselves, we need to fight the battles. And much like the soft-flowing stream that eventually erodes the rock in its way, we must keep fighting and believing—in ourselves and others, all the while knowing we are not alone.

  Perseverance has brought me peace, well-being, and a sense of direction. May the acceptance of this award today be a shared insight among all of us so that together we may find a clear sense of experience and live the dream that awaits us all.

  My special thanks are offered to the WillReturn Council of Assurant Employee Benefits as I am honored to be the recipient of such a prestigious award. May your contributions to the community find you personal and professional feelings of accomplishment and gratification. And for all your efforts to assist individuals in need, may you find resilience to obstacles, proactivity within what is truth, conscientiousness in living in the moment, and willpower to remain strong and determined as you already are.

  He received a standing ovation.

  AS GREAT AS the first two events were, the third was even better. That was the night Jeff got to live out a childhood dream as the Royals played host to the Baltimore Orioles.

  Before the game, while the crew prepared the field, Steve Palermo took Jeff and Assurant vice president Mark Bohen onto the field. They talked and took pictures in front of the Royals dugout. Jeff looked like a Royals pitcher in his white and blue Royals jersey. A team official acted excited when he saw him.

  “Are you a lefty?” he asked.

  “Sorry,” Jeff answered.

  “Dang,” he said with a smile.

  Mark Bohen smacked a fist into his catcher’s mitt. “I haven’t caught a ball in eight years,” he said. “So don’t do anything crazy.”

  “Well I haven’t thrown one in a while, so I’m just hoping I don’t get it dirty,” Jeff replied.

  Palermo turned to Jeff. “You got the balls to stand on the mound, or are you going to stand in front of it?” he said.

  “Are you kidding me?” Jeff said, staring at the ball. “I grew up playing sports all my life. This is a dream come true! And if you think I am skipping being on that mound to throw an actual major league pitch, you’ve got to be crazy!”

  Before Jeff knew it, the moment had arrived. People started filing into the seats at Kauffman Stadium. He got the signal, and he and Mark smiled at each other and prepared to walk onto the field.

  “Tonight’s ceremonial first pitch is being thrown by Jeff Matovic of Cleveland, Ohio, who was just awarded the Shining Star of Perseverance award given by the WillReturn Council in recognition of overcoming a lifelong disorder. Please help me welcome … Jeff Matovic.”

  Jeff and Mark walked onto the field and stopped on the first-baseline to wave to the crowd. Then Bohen walked to the plate as Jeff headed slowly for the mound. He wanted to take every step as slowly as possible. As he walked he couldn’t help indulging his fantasy. In his head he imagined a deep voice echoing through the stadium.

  Now pitching for the Kansas City Royals, number thirty-four, Jeff Matovic!

  When he finally reached the mound, he was in no hurry to look at home plate. He looked around first. The pitching rubber was a perfect white as he touched it with his right shoe.

  I cannot believe what I am about to do, he thought as he gazed around the cavernous stadium.

  “God,” he said, “thank you so much for granting me this moment.” He needed to turn around for the pitch. Then he remembered. He had always promised himself if he ever got the chance to be on a professional mound that he was going to see just how big the outfield was.

  There’s so much open space out there, he’d think when he watched baseball on TV. And you can’t find a place to get a hit?

  Jeff motioned to Bohen by raising a finger on his left hand as if to say “one moment” then turned toward the sun to gaze into the outfield. It was indeed enormous. Instantly he gained an appreciation for how fast, and how good, major league outfielders were. He imagined a SportsCenter highlight with an outfielder tracking down a well-hit ball.

  Are you serious? he thought. He’s got to cover that much ground? He better be a track sprinter too!

  Then he turned back around. Time for the pitch. Just outside of Assurant’s suite, I shouted my approval. “Yeah, Jeff!” I shouted, cupping my hands and yelling at loudly as I could.

  He pointed to me in the stands. And for one brief moment he felt like a real major leaguer who had a fan. He locked onto Mark with the ball behind his back. When I saw him step back and go into his windup, everything seemed to go in slow motion. I couldn’t hear anything. It was just him, on the mound, in one of the prettiest stadiums in the major leagues.

  He delivered the pitch, a little outside the left edge of the plate and thrown purposely high to ensure the ball would not get dirty. After Mark caught it, he jogged out to the mound as if Jeff had just struck out the last batter in the bottom of the ninth. He stuck out his hand and patted Jeff on the shoulder, then handed him the ball as they jogged into the Royals dugout, waving to the crowd.

  Later, in the suite, Jeff asked Palermo—if it wouldn’t be too much trouble—if he could get a ball signed by the team. “That would mean a tremendous amount to me,” he said.

  “I’ll try,” Palermo replied.

  After twenty minutes Palermo returned to the suit
e. He walked up to Jeff with a goofy smirk and his hands behind his back, nodding his head. “Enjoying that food there?” he said.

  Jeff nodded.

  “Regarding that baseball that you wanted me to have signed by the Royals team—” he said.

  Oh my God, Jeff thought. Was he able to pull that off?

  “I wasn’t able to do that,” he said, “but I was hanging around a guy named Brett shootin’ the shit, and …” He held up a brand-new major league baseball with a perfect George Brett signature in blue ink.

  “You’ve heard of this guy, right?”

  “Heard of him?” Jeff said. “He’s a legend!”

  Jeff gave him a hug.

  “Steve, this means more than you can possibly imagine!” he said. “I will always treasure this. It will be put in a case above my desk. I’ll tell stories for decades about this ball and our time together.”

  At the end of the game, which the Royals won, Palermo bear-hugged Jeff before we left the suite. They had talked all night. Bonded. You could tell Palermo respected Jeff, even admired him. Before we left he held Jeff closely in a manly embrace and spoke softly in his ear.

  “As Mike Ditka once told me, you got the balls of a lion, kid. The balls of a lion!”

  47

  “What Do You Mean I Won?”

  THE YEARS AFTER Jeff’s award went quickly. I worked at the Star during the day, and at night I worked on the book, often calling Jeff to interview. It wasn’t easy. I was so tired, and I seemingly hurt more with every passing day.

  In many ways I lived for Jeff and the promise of our book. And every day there was one thought that kept me going: if Jeff had the courage to survive what he had survived, certainly I could endure whatever hardships I had to face.

  He was my hero and my inspiration. And in July of 2009, I found out just how much that inspiration meant to me.