Copyright 2004 McClatchy Newspapers Inc.  
The Herald (Rock Hill, S.C.)
March 21, 2004 Sunday FINAL EDITION
SECTION: LIFESTYLES; Pg. 1C
LENGTH: 1350 words
BYLINE: By Lauren Hoyt / The Herald

LANCASTER - Angelo Sciulli appears at the foot of the stairs, his face bright with a smile. "Do I look sick?" he asks, hoping symptoms of his unwelcome fate aren't obvious to strangers.  

His words are slurred and he takes several minutes to ascend the half flight of stairs to the kitchen. When he reaches the top, he takes hold of his walker and slowly makes his way to the table.  

His saintly wife, Jan, brings him a pen and pad and sits across from him to watch his mouth and make out words others might not understand. If his witty words can't be understood, he'll write them on the pad.  

Sciulli, 57, of Lancaster has trouble walking and talking because he has amyotrophic lateral sclerosis, known as ALS, or Lou Gehrig's disease. He was diagnosed with the progressive neuromuscular disorder in 1998, and so far he has defied the odds. Most patients die within two to five years of diagnosis.

Seven years since his diagnosis, Sciulli has not been deterred by a cruel fate. He's pursued a second career as a nature photographer, traveling the world to capture natural images despite his illness.  

His photos have been included in exhibitions and collections across the country, as well as in nature-related magazines. And he just self-published a book, "Challenging Nature Photography," about continuing to do photography even as his illness has progressed.  

He wrote the book to bring awareness to the disease. Each chapter is about a different trip and he explains the emotional, physical and spiritual changes to his life as he lives and travels with the disease.

"ALS is not a nice disease," said Sciulli, retired director of chemical research for Springs Industries Research and Development Center.  

The disease gradually weakens the muscles and leads to paralysis. One of the most tragic aspects of the disease is that while it weakens the body and renders it useless, the mind remains sharp. He doesn't feel pain, but he  experiences frustration.

"Imagine having to constantly find new ways to do everyday tasks," he said, like tying your shoes.  

He relies on a walker inside the house and a wheelchair in public. He can no longer drive because it's too risky. If he should fall, he'd be like a turtle, he said, and wouldn't be able to get back up.

Triumph over devastation

Sciulli, a father of two and grandfather of one, had been retired from Springs only for a year when he found out he had the disease.  

He and his wife were planning on downsizing their tri-level house and maybe buying a cabin in the mountains. He was active as a volunteer at Kings Mountain National Military Park and had earned a black belt in karate.

Until his diagnosis, Sciulli would travel alone to photograph nature internationally. "I was able to pack 40 pounds with no effort while pursuing wildlife," he wrote in an initial interview via e-mail, which enables him to communicate easily.

But when Sciulli became unable to balance on one leg while doing karate and his speech began to slur, he went to his family doctor.

That's when he was told his symptoms were related, and he was sent to a neurologist. He had two tests done to confirm it was ALS, both he recalls as "gruesome."  

The first involved an electrical current being passed through his arm. The other involved needles about two inches long that were poked all over his body, starting at his feet and ending at his face.  

Then the truth. He had ALS.

Jan, his wife of 37 years, said that watching her husband's illness progress has been "devastating."  

But Sciulli doesn't reflect that devastation. "It took me a while to decide that I wasn't going to let my illness stop me from living," he said.

Since his diagnosis, he's been to Alaska, Arkansas, British Columbia, Italy, Ecuador and Kenya to take photographs. He most recently went to Florida's west coast to photograph birds. He now travels with a friend or guide.

He has a trip planned to Montana and Wyoming soon. And maybe he'll get to Argentina in the fall.  

"One of my contentions is that anyone who looks at my photographs does not know that I live with an illness that is altering my life to the extent it does," he said.  

His photographs have been shown in a number of venues, including in Rock Hill. Most recently, two of his photographs, "Sea Lions, Galapagos, 2002" and "Rhinoceros, Kenya, 2001," were accepted into the MDA art collection. The MDA works to help those with ALS and about 40 other neuromuscular diseases. The collection, at MDA's national headquarters in Tucson, Ariz., includes art by people across the country with neuromuscular diseases.  

He also has a permanent collection of his works on display at the Charlotte Muscular Dystrophy Association/ALS clinic in Charlotte. A traveling exhibit of his works is on display at Springs Creative Fabrics in Rock Hill.  

His photographs have appeared in Nature Photography magazine, Montana magazine, Wheelin' Sportsman, MDA's national magazine Quest and Sandlapper, and in exhibits at the National Press Club, the International Hall of Fame and Museum and at the Piccolo Spoleto Festival.  

Photography has been an interest for Sciulli since college, when he made film developing chemicals. About 10 years ago, he bought an antique camera and a hobby progressed into a career.

"Dr. Rosenfeld (director of the Carolinas Neuromuscular/ALS Center) said my determination to continue doing my photography is a big reason why I have done so well," Sciulli said.  

He now lives in the bottom level of their home so he doesn't have to maneuver stairs. The L-shaped den has a kitchen area with a refrigerator and microwave, a bathroom, a work space with a desk and computer and a living area with a TV and bed. The Sciullis are going to have the carpet replaced with vinyl so he can get around easier with his walker. And they'll add a sink to his makeshift kitchen.

He can care for himself for the most part, but his wife, a full-time business consultant, helps with some things, like making breakfast and moving things, such as the heavy bags of dog food for their three shepherds.  

There's a door out to the backyard, where Sciulli can retreat to take photos of backyard visitors - snakes, squirrels, bugs and birds - between his travels.

It's a place he can go to stay productive. After all, as Sciulli shares on his book's cover, just because he has an illness, it doesn't mean he has to be sick.

Visit Angel Sciulli's website to view his photographs, scnature.com