Ticked

by James A. Fussell

  But maybe there was a way. Maciunas was truthful but vague on insurance forms. He wrote “DBS for a movement disorder” instead of “DBS for Tourette’s.” If the insurance company didn’t ask which movement disorder, Maciunas wasn’t about to tell.

  It was a chance they needed to take. But first Jeff needed to get on Debra’s insurance plan—now. They knew what they had to do. They scrapped their dream wedding at the Renaissance Fair for a simple ceremony at Lyndhurst City Hall. They got the license, and in three weeks they were married. Jeff’s tics relented enough to let him enjoy the moment with his bride. After the hugs and the kisses, the smiles and the handshakes, Debra added Jeff to her insurance. Then they both held their breath as they sought preapproval for coverage of Jeff’s costly surgery.

  35

  Quarter-Million-Dollar Insurance Dance

  JEFF COULD HARDLY walk. But now he had to run.

  Grunting, twitching, blinking, punching, head shaking, arms flailing, he dropped his cell phone and began doing laps around his living room. Jubilant but unsteady, he raced through the place like a lush who’d hit the lottery. Socks slipping on hardwood floor, he fell down, jumped up, and pawed pictures off the wall. As he crashed into couches and knocked knickknacks to the floor, his four cats scattered as if running from a Rottweiler.

  “Yes!” he screamed, pumping his fists between spastic shakes and spectacular crashes. “Yes! Yes!”

  Bruises? Broken furniture? He didn’t care. He was finally getting the one thing that had eluded him for more than three decades.

  A chance to be normal.

  The insurance agent had just called with the news of whether the company was going to cover the cost of the quarter-million-dollar brain surgery that just possibly could save his life. He had been waiting for the call for what seemed like years, praying for a good outcome. When it finally came time, he couldn’t breathe.

  This is it, he thought after the caller identified himself. If we don’t get this, we’ll have to wait, try to get a grant, or have fund-raisers. A no easily could have delayed everything for five years or more. He couldn’t wait five years.

  Then he heard the voice on the other end. “Mister Matovic?” It was dull, bland, and utterly devoid of any personality or spark.

  Oh, no, he thought. It’s bad news. Nobody can be that dull if it’s good news. And yet …

  “I want to give you a confirmation code,” the man said in a buttoned-down monotone.

  “Confirmation code?” Jeff said. “What does a confirmation code mean?”

  “Mr. Matovic,” said the voice, slow as a Sunday sermon. “Your insurance is going to cover your procedure. Your appointment with Dr. Maciunas is scheduled for November eleventh.”

  That’s it! It happened!

  Nearly vibrating with excitement, he clambered clumsily from the living room into the great room and back again, stopping only briefly when he ran into something or fell over.

  “Ahhhhh!” he yelled, waving his arms. “Thank you, Gaaahhhdddd!”

  And yet crying out wasn’t enough—he had to run, he had to jump, he had to … dance! After twenty frantic laps he finally stopped long enough to call Debra at work. But when she answered he was so emotional all he could do was blubber into the receiver.

  “Oh, honey, it’s OK,” Debra said in a brave voice, assuming the worst. “We’ll find a way.”

  Then Jeff found his voice. “Babe,” he said, breathing hard, and with trembles of emotion in his voice, “how would you like your day to get a whole helluva lot better?”

  “Tell me, babe!” Debra said, her mood brightening.

  “We’re approved!” Jeff shouted.

  “Ahhhhhhhhhhhh!” Debra screamed, jumping to her feet in her office. It was almost too much to process. It was everything they had ever wanted. They had hope. They had a yes from one of the top neuro-surgeons in the country. And now they had insurance approval!

  If the operation ended up working, Jeff knew he’d have to thank his doctors. But there was someone else vitally important to all of this whom he didn’t know he’d have to thank.

  Frankenstein.

  36

  The Story of Medtronic

  IN 1932 EARL Bakken—the man who would start the company that made the stimulators doctors planned to put in Jeff’s brain—was an eight-year-old boy growing up in the Minneapolis suburb of Columbia Heights. Young Earl had always been fascinated with electricity. But one Saturday afternoon at the Heights Theater on Central Avenue, he saw a movie that took that interest in a whole new direction.

  Frankenstein.

  Written by Mary Wollstonecraft Shelley—wife of English romantic poet Percy Bysshe Shelley—when she was only twenty-one, Frankenstein told the story of a “mad” scientist who used electricity to bring to life a creature made from salvaged body parts. In the 1931 film adaptation, director James Whale used high-arcing transformers to dramatically show the power of electrical energy flowing into the creature’s body. As he sat through the movie again and again, young Earl was fascinated by the restorative properties of Dr. Frankenstein’s life-giving electricity.

  Inspired, the imaginative third-grader began dreaming of building actual stimulation devices that would restore life—or help keep people alive. He conducted his own experiments with electricity in the basement workshop of his boyhood home. As he grew, Bakken continued his interest in futuristic medical electricity. He carried that interest to the University of Minnesota, where he studied electrical engineering in graduate school. His interest in the evolving field of medical electricity often prompted him to visit the university’s new biomedical school, where teachers and their students were merging medical technology with engineering technology. He met fascinating people there who worked with electrocardiograms and other electrical devices in clinical labs.

  In 1949 hospitals, clinics, and academic labs had just started to use some of the electronics developed in World War II. The problem: they had no one to fix the machines when they broke. Knowing Bakken was a graduate student in electrical engineering, professors at the biomedical school asked him if he could repair some of their broken medical equipment.

  He jumped at chance. Suddenly Bakken was eight years old again, sitting in the Heights Theater on Central Avenue watching Dr. Frankenstein infuse the monster with life-giving electricity. Learning by doing, he repaired EKG machines, flame photometers, osmometers, and pH meters.

  Later, at a family birthday party he told his brother-in-law, Palmer Hermundslie, what he had been doing. That gave Hermundslie an idea. “Maybe there’s a business in setting up a quality repair service for medical electronic equipment,” he said.

  They didn’t analyze the idea or study its market potential. Bakken simply quit graduate school and Hermundslie gave up his job at a lumberyard. On April 9, 1949, they started their business, which they called Medtronic, out of a garage.

  From the beginning, Bakken employed a philosophy he called “Ready, Fire, Aim!” That full-speed-ahead philosophy allowed him to honor innovation over more practical considerations, such as money and market. Bakken wasn’t interested in limitations, only possibilities.

  There were many struggles along the way that would have caused lesser men to quit. But with Bakken’s talents, and a lot of Hermundslie’s money, they rode out the lean years. Despite occasionally teetering on the brink of bankruptcy, their visions began to become reality.

  In 1957, eight years after founding the company, they had their first breakthrough. Bakken invented the battery-operated, transistorized, wearable artificial pacemaker, the first of many advancements that turned Medtronic into a global leader.

  As Medtronic grew, Bakken urged employees not to limit themselves and motivated them to think in unstructured ways to chase the impossible dream. His approach helped employees to be fearless and to “break the bonds of excessive caution and crippling self-restraint.” Bakken encouraged his employees to follow their hunches, no matter how far-fetched or seemingly impractical. Ba
kken once said to an interviewer: “Most of the good things in my life and career have come to pass because somebody was willing to rush in where more careful folks were afraid to tread.”

  Bakken and his team created many useful technological products for the body, including radio frequency therapies, various mechanical devices, drug and biologic delivery systems, and diagnostic tools used to treat more than thirty chronic diseases. His company now employs forty thousand people, has annual revenues in excess of $14 billion (2009 figures) and has helped millions of patients in more than 120 countries.

  Bakken, who many consider an engineering genius, won such prestigious honors as the National Academy of Engineering’s Rust Prize and the IEEE Centennial Medal. He is widely credited with creating the medical device industry. But even a brilliant medical device is useless without an equally brilliant neurosurgeon who knows where to put it and how to make it work.

  37

  Dr. Robert J. Maciunas

  EVERY YEAR ON his birthday—March 15—Robert Maciunas picked up the telephone at exactly 12:24 PM and called his mother to thank her for giving birth to him. He called her when he was in medical school. He called her after he got married. He kept calling her, year after year, even after he became an internationally respected neurosurgeon. If he didn’t have the time, he made the time. Some things were just too important to let slip, and appreciation for his mother topped the list.

  Above all, Maciunas was a family man with a caring heart as large as his towering intellect. Which is why, on his first birthday after his mother died, when he realized he could no longer make his yearly call, he sat down and he cried.

  As a group, neurosurgeons can be an arrogant lot. Brash. Conceited. Self-important. Sensitivity is not part of the job description. They do better with audacity, like an NFL quarterback or an air force fighter pilot.

  Bob Maciunas was a notable exception. A renaissance man who loved art and history as much as midbrains and microsurgery, he cared deeply about the feelings of others. He read poetry and wrote love sonnets to his wife, worked in homeless shelters, and taught his sons, Nick and Joe, the importance of simple human decency.

  “Dad always taught me to be respectful of everyone,” said Nick, his oldest. “Not just people with authority, or those who might help me out in the future. He always made a point of saying hello and thank you to janitors, even when we were just passing through a place…. It was very important to him to make sure that people were appreciated for their work, no matter how small the task. He was kind in many ways, but this simple generosity particularly stood out to me.”

  His skill as a surgeon stood out as well. Consistently recognized by his peers, Maciunas was one of the best neurosurgeons in the world. By his early fifties he had written 106 peer-reviewed journal articles, nine books, and thirty-one chapters in the books of others. He had given more than three hundred conference presentations and held ten patents. An expert in deep brain stimulation who liked to use his creativity to find novel solutions to complex problems, he once called his work “an equal mix of high science and high art.”

  Medical skill ran deep in his Lithuanian roots. His mother, Genevive, was a dentist. His father, Algirdas, was chair of general surgery at Vytautas Didysis University in Kaunas, Lithuania, while his grandfather served as the country’s minister of health.

  When the KGB entered Lithuania in the 1940s, his parents fled to the United States with their three daughters. Bob was born in Chicago and grew up wanting to be a doctor. In 1976, at the age of twenty-one, he graduated from Northwestern University with a bachelor’s in biochemistry. After completing his studies in 1980 at Abraham Lincoln School of Medicine at the University of Illinois, he did his residency at the Mayo Clinic, learning both general surgery and neurosurgery.

  The Mayo Clinic gave him something else too—his future wife, Ann Failinger. Ann worked as a neurology and neurosurgical social worker. She often helped Maciunas’s patients who needed counseling or special care after leaving the hospital. One of them was an eighty-four-year-old woman who recently had become Miss Gray Panther of Minnesota.

  “You’re going to marry my doctor one day,” she said. “He would be perfect for you.” Ann smiled and nodded. But she hadn’t even met Bob Maciunas.

  That soon changed. A week later he saw her walking down the hall and declared for himself: “That’s the woman I’m going to marry one day.” Not long after, in 1983, the predictions came true. On a frigid day in Rochester, Minnesota, Robert Maciunas and Ann Failinger married in St. Mary’s Chapel inside the Mayo Clinic.

  One day Ann, still working as a medical social worker, showed an interest in medicine while working beside a doctor. “It was fun to try to figure out the diagnosis,” she said.

  “You should go to medical school!” her husband said.

  “You’re nuts,” she said with a laugh. Ann didn’t believe she was smart enough. It didn’t matter. Bob Maciunas saw potential, and he moved quickly to encourage it.

  “I’m going to lock this door,” he said, gently shooing his wife out of the house. “Don’t come back until you’ve signed up for pre-med courses.”

  She enrolled and took the courses. Eight years later, after moving to Nashville and having a son, she graduated from Vanderbilt Medical School and became a pediatrician.

  Ann still could not believe what her husband had inspired her to do after the couple moved to suburban Cleveland, where he took a job at Case Western Reserve University School of Medicine—and later, with University Hospitals of Cleveland. But then Bob Maciunas believed in people, often more than they believed in themselves. He pushed and prodded, nudged and encouraged. Instead of coming up with a thousand reasons why they couldn’t do something, he urged them to find one reason why they could.

  In Maciunas’s world, nothing was impossible with enough work, passion, and love. His was a world filled with beauty. He seemed to absorb art and poetry straight through his skin. He treasured good wine, good coffee, classical music, and classic rock—and spoke Lithuanian, German, Spanish, and a little Russian. He seemed to know everything about everything. A fellow physician once said he had “the biggest hard drive” of anyone he had ever known.

  But of all the passions in his life, his greatest love was reserved for his family. He cared deeply about his boys’ education, helping them with difficult homework and encouraging them to stretch themselves academically.

  From their family home in Chagrin Falls, Ohio, he and Ann traveled extensively with the boys, taking them to Europe to show them the world’s great works of art and to Alaska and the Rocky Mountains to see nature’s splendor. During their trips he regaled his boys with detailed facts, wanting them not just to see the sights but to appreciate the history, culture, food, language, politics, and geography.

  Above all, he wanted his sons to develop character.

  By all accounts, they did. Nick and Joe both played on a soccer team for Hawken, the private school they attended. One day, after Joe had a rough day in goal, he handled it with grace. Afterward Maciunas told a friend, Oberlin College dance professor and choreographer Carter McAdams, that he couldn’t have been prouder of Joe than if he had made the winning save.

  “It’s so incredible to be a father and watch your son become a man right in front of your eyes,” he said. Despite a busy schedule, Maciunas did his best to make all of his sons’ soccer games, including the Ohio state championship in 2005. The game before, Nick had helped score the winning goal, sending Hawken to the finals.

  “Oh my God,” Maciunas said, realizing he had a conflict. “What am I going to do?”

  He had to fly to Germany to give a speech at a prestigious international neurosurgical conference the day before the championship game. Other people would have made their apologies and missed the finals. Not Bob Maciunas. He left on a Wednesday evening and flew overnight to Germany. On Thursday he gave a fifteen-minute speech, then rushed back to the airport and flew nine hours home to make the game.

  Ha
wken lost. But to Maciunas, that wasn’t the point. You cared deeply. You gave it your all. You found a way. That was the point.

  And so it was with his patients. When Jeff Matovic poured out his heart to Robert Joseph Maciunas, he did not do so in vain. After years of frustration with other doctors, his pleas had finally reached someone who cared deeply, someone who would give it his all, someone who would find a way.

  Maciunas was struck by Jeff’s resilience and bravery and deeply moved by his struggle. He saw him not just as a patient or a problem, but as a human being. When he got home that night he poured himself a glass of wine and sat with his wife on a love seat in their long kitchen. Ann had never seen her husband so eager to tell a story. He looked at her with tears in his eyes.

  “I saw a patient today who just broke my heart,” he said, describing Jeff’s collection of painful tics. “How could he live this way for as long as he has? How could he maintain any sense of dignity or sanity? I want to help this guy. I really want to help this guy!”

  Maciunas talked about how thin Jeff looked. “He burns off more calories in five minutes that I do in two weeks!”

  He talked about how Jeff was willing to put his life on the line. “I can’t believe how brave he is,” he said. “I could never do that!”

  Over the next several months he became obsessed with Jeff’s case, spending many sleepless nights reading up on similar surgeries around the world, none of which had been completely successful. Night after night he called Brian Maddux and other physicians to brainstorm, applying everything he knew to the available medical literature. In between he prayed—at St. Paul’s Episcopal in Cleveland Heights and at home. “We need God’s help to heal,” he told his wife.

  “Bob,” his wife told him, “you’ve been blessed with a wonderful set of hands. God will be with you in that surgery. He sees your intentions to change Jeff’s life. He will help you.”