Ticked

by James A. Fussell

  We laughed as we talked with strangers, hearing their stories and telling them ours. For two grown men well out of college, this was a ton of fun. We finally made it into the store, which smelled amazing. We laughed at signs that read: I GOT VD IN PORTLAND, and THE MAGIC is IN THE HOLE! Inside glass cases the one-of-a-kind doughnuts were as odd and unusual as the people in line, including several pornographically shaped ones and others that defied easy description. We knew what we wanted: one of the place’s specialties that had been recommended to us in line by several of the characters: the maple bacon!

  We ordered two of the maple bars that were topped with crispy strips of bacon, and smiled all the way back to our hotel. Back at the Benson, we paused to take in the extraordinary scenery. For two more hours we strolled the grounds of the historic hotel, appreciating our surroundings.

  “This is fantastic!” Jeff said of the opulent decor. “Oh, Deb would love this!”

  We even met the restaurant manager, Nick Stoddart, and got a personal tour of the Benson’s restaurant. Standing by a table next to a wall, Nick stopped.

  “You want to see something?” he said.

  We nodded our heads.

  Before we knew it Nick did something that caused a portion of the wall to open, allowing us access to one of the coolest wine cellars we had ever seen. The place was like the Bat Cave, only stocked with wine. It was old, and cold, and felt oddly like it could be haunted.

  It was nearing 4:00 AM. We asked Nick to take our picture in the cellar before finally calling it a night.

  THE NEXT DAY we got dressed up for the awards banquet. The lunch-time buffet was like everything else in the hotel—first class. Everything—from the seafood and the mountains of fresh fruits to the Kobe beef sliders and endless desserts—couldn’t have been better. We sat at a table with other award recipients from around the country and Mary Lou Nolan, an assistant managing editor from the Star.

  When my name was called as the winner of general feature—one of the most prestigious awards—it was one of the proudest moments of my life. There I was, in the middle of some of the top reporters in the country, including Pulitzer Prize winners and writers from influential papers such as the New York Times, the Washington Post, and the Wall Street Journal. And when they called the name of the winner of the best general feature story that year—anywhere in the United States or Canada—it was my name they called.

  A chill ran through my body as I walked to the front to accept the plaque. I tried to walk as slowly as I could, trying to make the moment last forever.

  This was a miracle if I had ever seen one. A miracle of my very own. I won the award. Me—the guy who shakes his head and cries under his desk and hurts so much he wonders if he will have the strength to go on.

  Are you serious?

  I smiled as I held the award up and briefly pointed toward Jeff on the way back to my seat. Back at the table, Jeff passed me a note, telling me he couldn’t have been more proud of me. No, I kept thinking, I couldn’t have done this without you.

  That evening I took Jeff out for a celebratory steak dinner to tell him that. We walked several blocks to Ruth’s Chris Steak House and ordered some of the best beef I have ever tasted. Jeff also got some complimentary shrimp, which melted in his mouth. It was perfect end to a perfect day—and the best time to show Jeff how much his amazing life had inspired me.

  “I can’t tell you how much your story of courage and bravery has meant to me in my life,” I told him. “It has helped give me back my hope, and helped me to take on larger stories that I wouldn’t have had the energy to tackle before. You helped me believe again in the power of miracles. And for that I will never be able to thank you enough.”

  I took the shiny gold pocket watch from my bag and handed it to him. “But maybe this will say what I can’t.”

  “Oh my God, Jim,” he said, cradling the watch in his large hands. “This is beautiful. Are you sure this is for me?”

  “Absolutely,” I said.

  “Wow,” he said, temporarily at a loss for words. “I mean … this is one of the nicest things anyone has ever done for me.”

  “Turn it over,” I said.

  He flipped over the one-hundred-year-old antique and read the inscription on the back.

  “Just remember,” he read. “You are a man for others … a miracle man!”

  “I couldn’t have done this without you,” I said. “We would not be sitting here right now without you. So thank you. Thank you so much.”

  “Thank you!” Jeff said, shaking his head.

  Suddenly the whole story made sense to me. And for the first time I understood my place in it when it came to the book. This was the last piece to the puzzle, both a perfect ending and a beginning to the book we’d been working on for years. It was Jeff’s story. It was my story. But most of all, it was our story. It was Me—and the Miracle Man.

  I laughed at the elegant simplicity of it all. After all we had been through, we had come out the other side better for it. We had found each other and found a purpose in our story. This felt like victory, and not just because of my award. It was the sum total of everything we had accomplished together. And it was easily one of the happiest moments of my life.

  I looked across the table at my partner, my brother, my hero, and raised my glass high in the air.

  “You know something,” I said, as we clinked glasses, “for a couple of weirdos with Tourette Syndrome, we’re not doing too badly.”

  Epilogue

  WRITING THIS BOOK was the single hardest thing I’ve ever done—and the most rewarding. I started it nine years ago with a man I didn’t know. Along the way he became my hero, my friend, and the brother I never had. We collaborated as partners. Through the experience we learned that nothing is impossible with enough passion, perseverance, and hard work.

  The book did not end up in the same place it began. We started with Jeff’s miracle, which was incredible on its own. The more we talked about our Tourette’s the more we became entwined in each other’s lives and the more we realized that this story was a living thing—organic and changing. It was Jeff’s story, mixed with my story, that became our story. It was a journey of discovery, an open-ended tale of one miracle that spawned several others.

  If you learn anything from this book, let it be this: your problems are only the difficulties you can see now. Even if they seem insurmountable, don’t give up. You have no idea how things may change tomorrow, or what’s just around the corner. But more than that, realize that no matter who you are or what you’re going through, like Jeff you have the capacity to inspire others and change lives with nothing more than sheer willpower and a caring heart.

  Many things have happened since the completion of this book. Today—thanks in part to the courage of Jeff Matovic and the skill of Dr. Robert Maciunas and Dr. Brian Maddux—deep brain stimulation surgeries are being done around the globe in greater numbers, giving hope of relief to patients with the most severe cases of Tourette Syndrome.

  On a personal note, Jeff and I dream of being a motivational speaking team. Thanks to his miraculous surgery and the effect it has had on me, that’s actually possible.

  Debra and Susan continue to be the best wives and mothers around. We are truly blessed to have them in our lives, because the truth is we wouldn’t have survived without them.

  Today, several years after his surgery, Jeff continues to enjoy a life free of tics. He is determined to take advantage of the opportunity he’s been given. Currently he is working as an academic tutor and motivational speaker. It is important to note that while his tics are completely controlled, he is not cured. He will be free of tics as long as the stimulator in his brain and the batteries in his chest continue to work. Every three to five years his batteries must be replaced in a small outpatient surgery. It’s a small price to pay for getting your life back.

  Shortly after his operation, University Hospitals Case Medical Center received a multimillion-dollar grant to study the use of
deep brain stimulation in people with severe Tourette Syndrome. Hundreds of patients from all over the world applied, many making emotional pleas about their dire situation or that of a loved one. Doctors evaluated all the applications, then chose eight patients for the first phase of the trial. While not all surgeries were 100 percent successful, five patients experienced a life-changing reduction or elimination of their tics. This first-of-its-kind study determined that DBS can reduce tic frequency and severity in some adults who have exhausted other medical treatments.

  In addition to patients who got help through the clinical trials, countless others have been inspired to write or call Jeff and Debra, expressing their admiration and thanks for the courage and determination it took to endure this suffering and find a way to triumph over it.

  Jeff and Debra continue to live in Cleveland and have added another new member to their family—their second son, Andy—bringing the number of their children to four. The two younger boys are rambunctious and full of energy and show all the signs of being tall, good-looking athletes like their father. Their son Chris, the older of the two, was born one year to the day after Dr. Maciunas said yes to doing deep brain stimulation for Jeff. Not to be outdone, Andy was born on the three-year anniversary of Jeff’s February 9 miracle surgery. Debra’s older children, Bonnie and Mike, are now young adults in college looking forward to bright futures.

  As for me, I am still at the Kansas City Star. Susan and I will soon celebrate our thirty-third wedding anniversary. Our daughter, Allison, has gone off to the University of Kansas, while our older son, Patrick, is living in Lawrence, Kansas, where he is pursuing a life in music as the drummer for his band, Sobriquet.

  About a year before we finished the book, the pain in my neck and brain increased markedly. Regular sleep became nearly impossible. A spinal surgeon took X-rays of my neck and diagnosed me with cervical spondylolisthesis. That’s a fancy word for vertebra slippage. It causes tightness, pain, and discomfort in my neck. Unfortunately that’s the same neck that my Tourette’s causes me to move and shake. While surgeons can fix the problem by fusing some vertebra together, I won’t be able to hold my head and neck still after the surgery. I worry that a sudden jerk could cause the fusion to break, leading to even greater problems.

  It hurts. But what’s new?

  Many of my friends wonder if I am going to have deep brain stimulation like Jeff. Not right now. While the prospect is exciting, it’s an unnecessary risk that I don’t have to take. I can afford to wait until doctors refine the procedure and reduce the risks. But do I dream of the possibilities in the next ten or fifteen years? You bet I do. Even if I never have the surgery, Jeff and his amazing doctors have given me a precious gift I can never repay. He has given me a realistic belief that one day I can escape this curse and have my own Tourette’s miracle. That’s more than anyone else has ever given me. And for a person who often feels like he’s sinking in quicksand and looking for one solid thing to hold onto, that’s everything.

  Since the surgery, Dr. Brian Maddux has moved his practice to Cincinnati, where he continues to treat neurological patients with the same skill and professionalism that he offered Jeff.

  By far the saddest thing to happen after Jeff’s surgery was the untimely death of Dr. Robert Maciunas, the architect of Jeff’s miracle, on March 1, 2011. Bob Maciunas died of two aggressive and fast-moving cancers—lymphoma and renal cell carcinoma.

  Maciunas’s illness caused the ongoing clinical trials of DBS with Tourette’s patients at University Hospitals Case Medical Center to lose steam.

  The news of Maciunas’s death hit everyone hard—especially Jeff. He and Debra attended the memorial service in Cleveland. There he told Maciunas’s widow, Ann Failinger, how grateful he was that Maciunas had given him his life back. In turn, Failinger told Jeff how important he was to her husband, and how hard he had worked to save him. Shortly after being diagnosed with terminal cancer, Maciunas wrote this poignant good-bye to his family and friends:

  This, then, is life. I am blessed by a rich, deep, and full life; I prize being surrounded and sustained by my beloved family, my special friends, my esteemed colleagues, and my entrusted patients. I am now starting a new adventure filled both with terror and with hope. It is overwhelmingly clear how grand the provenance is that governs the web of our lives. I am sufficiently grounded to respond, “’Tis a gift to be simple, ’tis a gift to be free,” and to rejoice daily in the ennoblement of true good work, in the transcendence to be found in other people, in the meaning and the beauty of this world, and in the given mystery that is my life. I stand justified and assured of the promise of the future to come.

  After Maciunas died, Jeff wrote the following, and hung it on the wall in his office under his doctor’s picture.

  I am eternally grateful for every moment we spent together, and your memory will live on. Through the life you gave back to me I shall honor you, and embrace your vision, life, and passion through my actions for others, selflessness and courage. You will be missed, Dr. Maciunas. Be at peace now … with God at your side knowing always the difference you made in lives around the world. I will never forget you, and will always love you as you hold a very special piece of my heart. Always your pioneer, Jeff.

  Acknowledgments

  Jim Fussell

  WHEN I WAS younger I hated it when Oscar winners thanked everyone—their wife, their parents, their dead Uncle Morty.

  Then I wrote a book.

  I get it now. You rarely achieve something of enduring significance by yourself. There are people who help you along the way, without whom your efforts would have been much harder, if not impossible. It’s only right to acknowledge how much their assistance meant to you—no matter what anybody else thinks.

  I don’t have a dead Uncle Morty. But I do have a wife, so that’s where I’ll start.

  My beautiful wife, Susan, is extraordinary by any measure. In more than thirty years of marriage she has listened to 5,479,627 things that I’ve read to her—or at least it seems that way. She has given me two beautiful children, rubbed my hurting neck and back more times than I can count, and always been there for me when I got stuck, didn’t think I could go on, or just needed to talk. Susan, I love you and thank you for every day you’ve given me—and apologize for all the days I’ve taken from you while working on this book. I can never repay your kindness and your eternal patience—but I will try.

  I also must thank my partner and my hero, Jeff Matovic. Without him there would be no miracle, and no book. Jeff is the bravest person I’ve ever known. Finding Jeff changed my life, gave me back the hope I thought I’d lost, and inspired me to do things I had no right to be able to do. Jeff gave me a new purpose and a new belief. He has become my brother, and understands me in ways no one else can.

  Of course there is one person who was not part of the story who is particularly noteworthy. This book would not have been possible without the help of a talented and special friend—my editor at the Kansas City Star, Sharon Hoffmann. With endless patience, a keen eye, and good cheer, she met with me week after week on her own time, giving me more than I ever expected while asking nothing in return. When I was confused about the book’s structure, she gave it form and meaning. When I was in the dark, she led me to the light. She helped me when I was weak and listened to me time and again when I’m sure she had other, more important places to be. What can I say? You’re amazing, Sharon, and I adore you for what you’ve done.

  Jeff and I also are indebted to Dr. Brian Maddux for his assistance in helping us understand the complexities of deep brain stimulation surgery.

  Special thank-yous also go to my amazing mother, Anita Fussell, who has helped me throughout my life more than she can ever know; to my late father, Jay Fussell, who was the finest father a son could have hoped for; to my beautiful, smart, and outstanding children, Patrick and Allison, whom I love with all my heart and would run through fire for; and to my incredible sister and brother-in-law, Nancy and John Rosenow,
two of the coolest people I know. I also want to thank Dr. Maciunas’s wife, Dr. Ann Failinger, whose assistance was critical in understanding her brilliant husband; and Ann Hagedorn, Rick Montgomery, Eric Adler, Matt Schofield, Laurie Mansfield, and Pam Anderson, who provided a consistent sounding board for me when I needed it most.

  I also want to thank Ellen Nesselrode-Jasa of Hallmark Hall of Fame for helping me find my wonderful agent, Sharlene Martin, who tenaciously fought for this book every step of the way. Finally, a special thank-you goes to our editors and all the fine people at Chicago Review Press who believed in the worth of this project and helped make it possible.

  Jeff Matovic

  LIKE JIM, IT drove me nuts when I watched the Oscars, Emmys, and music awards. I’ve not tuned in for several years because I knew I could easily get a quick rundown of the winners on the Internet or in the newspaper the next day.

  I follow my partner’s thought when he wrote those simple yet powerful words, “I get it now.” Maybe I should have known all along that greatness achieved by others needs acknowledgment.

  I’ve learned that with any type of accomplishment there are other people involved that had to be in the right place at the right time and the right moment to make it all come true. And now I do understand and have learned yet another valuable life lesson.

  Jim and I started this project in 2004 and it has been the ride of my life in so many ways. It has allowed me to recount memories, to share a lifetime of commonalities including love, pain, anguish, humor, and tears with so many individuals who I need to thank. So, let me start.

  First, my Mom, Patty, and Dad, Jim, without whom, I wouldn’t be here today: there is no way to measure the amount of love, support, and dedication they have always provided. They have given endlessly to me in so many ways: physically, emotionally, spiritually, and mentally.

  Never can I recall my parents putting themselves before me. Mom and Dad, for all the times you knelt by my side and prayed with me, hoping for a better tomorrow and encouraging me to be the best person I could strive to be, I can only hope to repay a fraction of what you have given me.