A Family Ravaged by a Mystery Disease Fights Its Grief with Love and Laughter
02/13/1984 at 01:00 AM EST
At the altar of the Good Shepherd Lutheran Church in Manistee, Mich., the Rev. Chris Laursen led Carol Naffie and Ron Steinberg through the traditional vows of the marriage ceremony. Tenderly, the groom took the bride's hand in his own as the minister repeated the age-old questions. Suddenly, a cry of protest arose from the back of the church. Mark Naffie, 19, brother of the bride, stood in the choir loft like Dustin Hoffman in The Graduate. "Take your filthy hands off my sister!" he bellowed.
Stunned, the bride, groom, best man, maid of honor and minister paused for a split second, then burst out laughing. It wasn't the first time that clowning had interrupted the wedding rehearsal on Friday evening, Jan. 20, and it wouldn't be the last. The Naffie family was determined to enjoy this event despite—or perhaps because of—the fact that Carol, 30, was gravely ill with the same mysterious heart disease that had killed her sister Marilyn, 27, and her brother David, 20, within the last nine months.
Of course, neither the nonstop joking nor the anticipation of the next day's happy ceremony could erase the pain of recent family losses. Late that night another of Carol's brothers, Dominic Naffie Jr., 24, felt compelled to visit Mount Carmel Cemetery, where his brother and sister lay side by side in the frozen earth. There, even at two in the morning, he was not alone. Kelly Anderson, 19, David's girlfriend, stood at the foot of the graves, oblivious to the bone-biting cold and windblown snow, "talking" to the man she had planned to marry. Dominic hugged her.
"You must think I'm strange," she said.
"No, I don't think you're strange," he replied. Then he hugged her again.
No method of mourning seems strange to the Naffies: They have tried most of them in the years since a plague of almost biblical intensity descended upon their clan. Until recently the Naffie family could only have been called fortunate. Dominic Sr., now 61, had built a small local clothing store into a chain of jeans shops and then, in 1979, sold them and invested in an elegant Manistee restaurant. His wife, Bette, now 56, had borne him 10 children and raised them in a modest brick house that often seemed ready to burst at the seams with vitality.
The Naffies' ordeal began the year Dominic invested in the restaurant. After recovering from what seemed like a simple strep throat, Marilyn, then 23, began to slur her words. In January 1980 her doctors diagnosed her condition as cardiomyopathy—a disease of the heart muscle. They recommended six months of bed rest. Marilyn obeyed and by August felt well enough to return to her job as a special education teacher. Then in January 1983 she developed what seemed to be severe flu: She could not retain food, and her lungs filled with fluid. The disease worsened, and the doctors told her only a transplant would save her life. On April 1 she flew with her mother in a jet ambulance to Pittsburgh's Presbyterian-University Hospital for a new heart. They arrived at the hospital at 3:15 p.m., in time for the operation scheduled for that evening. At 5:30, however, Marilyn's beleaguered heart gave out. Her last words, spoken to her mother: "Are you okay?"
Distraught by Marilyn's death, Carol Naffie, an assistant vice-president at a Manistee bank, took a vacation to visit her sister Anne Mirretti in Tempe, Ariz. There, suffering from shortness of breath and an irregular heartbeat, she was tested and learned that she too had cardiomyopathy. Immediately, all the Naffies were tested for signs of the disease, and David was also found to have it. "It was unbelievable to us that he could have anything wrong with him," says Jennie Naffie, 36. "David was the picture of health. He could stay out all night and still put in a full day's work."
Dr. W. Scott Robertson, the Arizona cardiologist who treated both Carol and David, was equally mystified. "We don't know what caused this in the case of the Naffies," he says. "We really don't know if it is genetic or not. We suspect a common link—an infectious agent or toxic agent that they had all been exposed to—that is, something in the environment rather than something inherited."
The disease quickly took its toll on Carol. After 78 days in an Arizona hospital, she returned to her parents' home, where she lay virtually bedridden, her small frame wracked with pain, her breathing difficult. In July her doctors determined that she too would ultimately require a heart transplant. Learning of this, a family friend named Ron Steinberg, 43, an ad manager for an area newspaper chain, launched a campaign to raise the $100,000 that a transplant would cost. On Dec. 1 Steinberg took a more profound step: He asked Carol to marry him, and she accepted. "In spite of my situation, he was willing to take the chance and fall in love and end up marrying me," Carol says. "He didn't have to get involved and, to me, that's very special and very important."
David, meanwhile, was making his own preparations for marriage. In June he gave Kelly Anderson a hope chest. "We had a lot of plans," says Kelly. "We knew we wanted a big wedding. And everyone in the family bought me something for the hope chest." The couple did not set a date. They didn't think there was any need to rush. On Halloween David had been tested and told his condition was good. And he certainly seemed healthy. He worked long hours as a cook in his father's restaurant and, after work, liked to roar around town, blasting rock music from two full-size stereo speakers mounted in his Oldsmobile Cutlass.
On Christmas Eve David treated the family to a special holiday dinner: He cooked an excellent prime rib but admitted that he muffed the cake. Later that night he helped push cars out of the snow. "Don't worry, Dad," he reassured his father, "I'm fine."
Twelve days later, on the morning of Jan. 5, Kelly found David gasping for breath in his sleep. She called for an ambulance. Before it arrived, his labored breathing had ceased.
Carol, who had seemed far more ill than David, was devastated. "I felt like I got left alone," she says. "And I was scared because if it happened to him, it could happen to me." At first, she admits, she directed her anger toward God. "I don't believe He has a reason for everything, like people keep telling me. I don't believe that anymore, although David did. It's so incomprehensible to me to look at what we've been through and say there's a good reason for this." As the days passed, Carol's anger softened. "I've come to the realization that whatever's going to happen will happen, and there isn't anything I can do about it. I do what I can, and I wait."
Although her brother's death hit her hard, Carol never considered postponing her wedding. And so, 16 days after David's funeral, the family gathered again in the red brick house in Manistee. And, despite the circumstances, they came in merriment, not in mourning. They laughed, joked, wrestled on the living room floor and played raucous games of Trivial Pursuit. And they hugged each other. They hugged and kissed and whispered words of endearment more easily and more often than do families who are not so close to death. "Since David died, we haven't stopped saying, 'I love you,' " says Jennie. "We tell each other things now that we might only have thought before. If I think Cathy looks pretty today, I tell Cathy she looks pretty today."
For the wedding the Good Shepherd Church was bathed in a soft candlelight. Again Mark Naffie was perched in the choir loft, the scene of his Dustin Hoffman imitation the previous night. This time he didn't clown; he solemnly played the processional hymn on his trumpet. His father, long an amateur vocalist, sang More. Before rejoining his family, Dominic Naffie Sr. called down to his daughter from the choir loft: "I love you, Carol." At that Kelly Anderson started to cry. So did Anne Mirretti and Bette Naffie. But they quickly brushed away the tears, struggling to show as much courage as the tiny, frail woman who stood at the altar in a simple white gown.
Steinberg held Carol's hand. "I take you, Carol, to be my wife from this day forward, to join with you and share all that is to come," he repeated after Reverend Laursen. "And I promise to be faithful to you until death parts us."
"I take you, Ron, to be my husband from this day forward, to join with you and share all that is to come. And I promise to be faithful to you until death parts us," said Carol Naffie Steinberg.