Disfigured by Disease, Carolina Coed Michele Sealy Shows That Courage Is a Thing of Beauty
12/08/1986 AT 01:00 AM EST
12/08/1986 AT 01:00 AM EST
It was rush week at the University of South Carolina, and freshman Michele Sealy had her heart set on going Greek-specifically, with the Delta Gammas. But she was not sure of her chances. From the time she was 12, Michele's life has been a litany of pain and a catalog of hospitals. A rare cancer-like disease that attacks cartilage had disfigured her by destroying her sinuses, windpipe and eventually her nose. She would have to attend the sorority rush party with an artificial nose held to her face by magnets implanted in her skull. And minor surgery that day had left her temporarily mute.
"I was uneasy about going," Michele admitted. But she went. Recalls chapter president Amy McMillan: "I thought she'd been in an accident. Michele was writing everything down, and she told me about her situation. I thought, my God, for her to go through rush without embarrassment takes self-confidence. I was really touched."
Pat Sealy, 45, Michele's mom, had asked her daughter how she might handle rejection. "I'll be real disappointed," Michele had replied. "I'll cry—and I'll be okay." Her tears a week later though were those of joy as, amid hugging and cheering, she was welcomed as a new Delta Gamma pledge. "Michele has such guts," marveled family friend Donna Rayner. "She goes about it knowing she might be defeated, and she's won."
It has been that way ever since a day in 1979 when Michele's medical nightmare began with nosebleeds and sinus pain. Antibiotics didn't help, so Michele went to the Medical University of South Carolina at Charleston where, despite a biopsy, medical experts could not settle on a diagnosis. Doctors decided to treat her for a condition called midline granuloma, requiring radiation therapy. But 25 such treatments brought no improvement.
At home in Columbia, S.C. (Michele's dad, Robert, 47, is an auditor for the state department of education), she continued to suffer from excruciating sinus infections, which hospitalized her. "I think we almost lost her then," remembers her mother. After another biopsy, doctors concluded Michele had Wegener's granulomatosis, a disease that affects the sinuses and the larynx. She was put on chemotherapy with the drugs prednisone and Cytoxan.
Still her travails did not end. In March 1982 she was hospitalized when her bladder hemorrhaged, a complication brought on by the Cytoxan. A painful eye-duct infection 13 months later landed her back in the hospital. By the next year Wegener's had spread to her larynx and trachea, forcing doctors to cut a "trach" (breathing hole) in her throat; now Michele could talk only with a hand-held electronic synthesizer that made her sound like a robot. And if all that weren't enough, complications from the prednisone produced hip pains requiring yet another operation that put her on crutches.
Yet, far from being crushed, Michele was determined to go to college. She had more than made up for lost schooling—with homebound studies and summer sessions—to graduate from Irmo High School a year ahead of time because she knew her senior year would be spent undergoing her most crucial series of operations to date.
The Sealys were referred last year to Dr. William Panje, chairman of otolaryngology—head and neck surgery—at the University of Chicago Medical Center. An innovative surgeon who claims he "transplants anything and everything to build parts for the head," Panje, 43, proposed to rebuild Michele's nose and restore her voice. "She had skin over her nose, but the disease had eaten out the inside," he found. But when he created an internal prosthesis through her mouth, the skin began to fall apart and a hole appeared in the middle of her face. "Her skin in that area," he explained, "had very few blood vessels because of the disease and radiation and so could not tolerate any pressure."
For a while Michele made do with a Band-Aid over her facial hole. Five months later Panje tried a new technique, implanting a stainless-steel pin, about as thick as cardboard, with a rare-earth magnet containing the metalic element cobalt, to which an artificial nose could be held. He also reconstructed Michele's voice box, reaming out scar tissue "as hard as cement" and replacing it with a plastic tube wrapped with skin graft.
The fitting for a false nose, made of a silicon material, even provided some humor. Pat Sealy laughed when early models were tried on Michele ("I told her she wouldn't want a Cybill Shepherd or Morgan Fairchild nose"). Ultimately Dr. Louis Fine fashioned one by studying old photos of Michele and observing Pat's for inspiration. Now, when Michele wears glasses, the nose blends perfectly, and it is so secure she can swim with it in place.
The trial is not entirely over for Michele. Though she still must undergo local surgery every two weeks to dilate her breathing tube, she can now talk by covering the hole in her throat. If all goes well, the neck hole can be closed in about a year. Her doctor is more cautious on Michele's long-term prognosis. "She has been in remission for two years, a very good sign," says Panje, "but Wegener's can come back, or stay away forever." And if her facial skin and tissue rejuvenate, he adds, "We can always do a permanent nose reconstruction later."
But Michele is not a 19-year-old who sits and waits. Before starting college this term, she worked part-time typing and filing at the oncology (tumor) clinic at a local hospital. She spent time each summer counseling at a camp for kids with cancer. Now at the university, she carries a full course load and wouldn't miss a football game. She still commutes from home to the campus nearby, but she's lobbying her parents about moving into a dorm.
"Michele missed so much of her teenage years by being in hospitals," says Pat Sealy, "that her dad and I probably will let her do anything she wants."