"Over here!" "This way!" The dense crowd of photographers shouted, their faces lost behind flashes at the Los Angeles premiere of "Gleason," a documentary following the life of former NFL safety Steve Gleason. Famous entertainers -- including Nick Cannon, Jackie Long and Courtney Cox -- posed and waved under the strobe-light glow of cameras. Entertainment news outlets crowded together, fighting for interviews with the stars, who, once pulled to the side, discussed upcoming projects, fashion and Hollywood.
The swirling chaos halted as Gleason rolled onto the red, but in this case blue, carpet. The 5-foot-11 former footballer once weighed 212 pounds. Today, his long-sleeve shirt and loose-fitting pants fail to hide the fact that his muscles are mostly gone, and he is only as tall as his motorized wheelchair allows.
Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's disease, has devastated his body. ALS, an incurable disease characterized by the gradual loss of muscle control, eventually paralyzes its victims, leaving them unable to speak and breathe on their own. Cognitive function is not affected, however.
A Velcro strap is wrapped around Steve's forehead, keeping his neck from folding under the weight of his head.
A man carefully pulled the strap from Steve's brow and the flashes started again. Steve's lips curled up in a soft smile. His wife, Michel Varisco, stood with him and smiled.
Once the flashes stopped, Steve's head strap was reattached and he rolled off. Michel stayed for interviews.
"I think this movie will change your life," she remarked to a reporter.
"Gleason" begins with Steve's NFL career. It shows him in his physical prime, becoming a hero in The Big Easy by blocking a punt that was recovered for a touchdown in the 2006 Saints home opener against the Atlanta Falcons. The block was a symbol of recovery and rebirth for the city of New Orleans after the horrible destruction caused by Hurricane Katrina. The film also chronicles Gleason's physical decline, from the day he received his ALS diagnosis to when he received assisted-breathing technology because he could no longer do so himself.
"My advice is to try to laugh and just try to live life as well as you can," Michel said.
"The way that Steve and Michel have found a way to keep humor through this journey is pretty incredible," Scott Fujita said, a producer of "Gleason" and Steve's former Saints teammate.
It was easy to understand why Michel would want to focus on being positive and happy throughout Steve's decline, but after the screening, it was hard to imagine how she could.
The movie was astonishingly raw. Viewers had a front seat at Steve's arguments with his father over his religious faith, the birth of Rivers, Michel and Steve's son, and Michel attempting to administer an enema to Steve.
Steve, his family, the directors and producers have seen the film dozens of times, from making edits to premieres at Sundance Film Festival and in other cities. In the beginning, the experience was emotional and intense, but the constant exposure has left the cast and crew almost numb.
"You become callous to it and you start to lose perspective on it," director Clay Tweed said. "It hits me in different moments at different times now, honestly."
But for the nearly 500 guests in the theater at LA Live, the experience hit hard. When the lights came up, people stood and cheered, wiping tears from their cheeks.
"Hats off to you Michel," a woman in the audience yelled. "You are an amazing woman!"
"You are totally awesome!" a man hollered at Steve.
People were buzzing. Before the film, the crowd knew of ALS, some maybe even participated in the Ice Bucket Challenge, but they didn't know ALS. After the screening, it was as if they had lived it. They watched the disease ravage relationships, cause unimaginable pain and prevent a father from holding his son.
Steve didn't speak before the premiere. In fact, five years after his diagnosis in 2011, he can't speak at all. A computer tracks his eye movements to speak for him.
"Showing the film in Los Angeles makes things very real," Steve said through his computer. "I think the phrase was 'I'm so nervous I need to take a dump.' "
When the laughter faded, the theater was silent, except for the hum of Steve's assisted-breathing device.
"I hope that this film changes your perspective on life," he said. "Life is good, let's have a drink, thank you, good night."
The film will be released in select theaters on July 29 and will be available for streaming on Amazon.
