CLEVELAND -- The country's largest gathering of burn survivors began last night with a sunset march toward Lake Erie. It was a procession of firefighters, in dress blues, and people who had never asked for this journey.
To the sound of bagpipes, the constants of the annual World Burn Congress emerged in the warm evening. There were men and women who were almost without faces. There were hugs and hellos among scarred people who looked each other in the eye.
And there were, as always, the newcomers.
This year, they were from the February nightclub fire in Rhode Island, and they were asked to walk in front, to carry the banner of remembrance, honoring those who died from fire in the last year. This group of new arrivals was told to expect more out of this week. They were told to expect transformations.
Station survivor Catherine Sagesta had come, from her apartment in Taunton, simply "to get help," help with "depression, going out in public, people staring."
"I'm really reaching."
There is no vote-taking at the World Burn Congress, no delegations. It is more than a seminar, its organizers say. Rather, it's a congress in the pure sense -- people gathering to discuss a problem, in this case the ravages of fire on a human's skin and soul.
"Life strategies for feeling comfortable anywhere and anytime" is one workshop. "Reconstructive surgery, myths and reality." "Intimacy after a burn injury."
The congress is sponsored by the Phoenix Society for Burn Survivors, a Grand Rapids, Mich.-based organization whose mission is to help people who have been burned "somehow incorporate something positive in our life," said Amy Acton, executive director.
The society is named after the mythical bird that lived for 500 years, then plunged itself into the fire and emerged more beautiful than before.
The Station Nightclub Fire Relief Fund, the Rhode Island charity effort led by the United Way and Rhode Island Foundation, decided to send a handful of burn survivors, family members and social workers to the Cleveland convention, partly on the advice of Frank McGonagle, a 72-year-old board member of the Phoenix Society. McGonagle, who lives in Swansea, knows he needed uplifting after the car explosion in 1966 that took his first wife, Charlotte, who was pregnant with their fifth child, and left him with "weird-shaped ears and a scarred-up head" and a drinking problem and guilt so bad "it almost destroyed me."
His support, he said, was a former gunner burned in World War II, a character who looked like a "Muppet," with just a tuft of hair on his head, and no ears.
"He was a remarkable guy, but all we did was go out and drink martinis and get absolutely snockered," said McGonagle.
When he and his wife, Arlene McGonagle, attended their first burn conference 15 years ago, he had to keep running to his hotel room between sessions to cry. "Hell," he told himself. "I got off easy."
Frank, who is bald with deep blue eyes that tear up when he tells his story still, believes that few of the badly injured in the Station fire are ready for the World Burn Congress. The plan is for attendees now at the conference to help The Station Nightclub Fire Relief Fund to organize a similar motivational meeting for other burn survivors. The fire killed 100 people and injured 200, of which 115 were hospitalized and in many cases still getting medical care.
"A lot of them, they're just trying to get dressed in the morning," McGonagle.
When he met Cathy Sadesta, The Station nightclub burn survivor from Taunton, he thought she was ready.
"I see her wanting to get on with her life, wanting to heal," he said. "She's moving in the direction of her fears."
CATHY LIVES in an apartment that is cozy with her lighthouse and owl figurines and pictures of her two daughters, whom she is raising on her own, much like her own mother raised her.
"Independent and stubborn," she said of herself.
She was nervous about going to the World Burn Congress, because she knew she was going alone. Each burn survivor was allowed to bring a family member, but Cathy's mother had already taken too much time off from her job as a McDonald's manager while Cathy was in the hospital.
Cathy talked herself into it. Look how she had already handled things since the fire. She started keeping a journal, and declared that she was turning it into a book. When her insurance would not cover the Eucerin lotion she likes to apply to her burns twice a day, she wrote to the company and got them to donate boxes of it to her. She forced herself to stand in front of the mirror and look at her head, without a trace of her long dark hair. Doctors have rendered her hair follicles useless, covered with scar tissue, she said.
She arrived at T.F. Green Airport yesterday at dawn, wearing a floppy hat that hid the bandages.
She had packed carefully for this trip, her first on a plane. She brought undershirts to wear beneath her clothes to soak up the blister, the size of her palm, on her back.
She brought petroleum dressing and antibacterial cream for her head, and ointment for her right eye, which gets dry because the burned skin over it is tight and pulling on her eyelid.
She brought lotions for the waffled skin on her right arm, and for her knotty, stiff hands, which, she said proudly, used to type 65 words a minute at her job at a screw manufacturer.
She met the rest of the Rhode Island group -- about 15 people -- at the gate. Among them was a woman who had been Cathy's roommate at Rhode Island Hospital -- though Cathy didn't remember it because she had been in a coma.
One man wore a black shirt that said: "Rock & Roll, never forget The Station."
BY YESTERDAY afternoon, Cathy Sadesta was seated in a meeting room at the Renaissance Cleveland Hotel, where a few preliminary workshops were held for the early arrivals. She was near a woman whose face was flat; every feature had been burned off. The woman's husband, who was not burned, rubbed her back.
Barbara Quayle, a 5-foot-2-inch whirlwind, gave the lecture, "Life Strategies for Feeling Comfortable Anytime."
"I was burned in a car accident. Thank you for your concern."
That's her two-sentence answer to strangers who want to know what is wrong with her face. Everyone should have such an answer, she advised.
"You don't owe it to everyone to give them your story," she said.
A few other people in the room chimed in, including another woman whose face was badly disfigured. "I simply tell people that I was burned in a private airplane."
Were others on the plane? strangers will continue.
"Two people, just me and my fiancé. He died," she'll tell them, adding that she's now happily married.
One man gave his quick response: "Burned in an explosion seven years ago."
Said Quayle: "The story just gets shorter and shorter and then it's like an old war story."
"I almost want to change my story for variety," she said. "I was bobbing for French fries." And everyone laughed, though Quayle grew more serious. She held up her hands, one burned, one half gone.
"I'm never going to be a concert pianist," she said, "but I was never going to be one before."
The trick, she told them as they left, is "not being a victim."
Those words were repeated as everyone filed outside to begin the march through Cleveland. One man approached a reporter and said: "Remember to call us survivors, not victims. That is what this is all about."
Cathy Sagesta joined the procession, her face exposed to the light. Her bandages visible for all to see. For the first time, she said, she was not wearing her hat in public.
