Living with ALS, Nike designer Robert Feliciano has purpose

He was moving in the fast lane as a model and Nike designer in New York City when he realized he could barely keep his grip on a glass as a part-time bartender.

“I went to grab a pint to put beer in and almost dropped the glass,” he said.

It felt like his hand had fallen asleep, but the sensation never left. A few months later in 2018, he would be diagnosed with ALS, a disease that now has left the 41-year-old from Buffalo unable to move, breathe or speak on his own. He speaks, designs and interacts with the world through his eyes.

And with his remaining strength, he said, he focuses on the narrow hope for recovery and on raising awareness about ALS until a cure is found.

He said he’ll keep designing “hands free” for as long as he can. That’s his connection to sanity, he said, a visual diary of his own journey.

“It is everything to me,” he said.

Feliciano spoke with The Buffalo News for a few hours in September from his hospital room at Erie County Medical Center, just prior to him being moved to Terrace View nursing home next door. Though a tracheotomy tube ended his ability to speak in January, he uses eye-tracking computer technology to talk via text.

Conversing with Feliciano in real time takes stamina, with an eye-tracking texting screen that is easily disrupted if Feliciano or his eye laser-tracking device is jostled and misaligned.

Every time someone accidentally disrupts his communication system, a wave of immense frustration washes over him because there’s nothing he can do about it or anyone he can alert until someone independently notices the problem.

Feliciano uses his eyes to move from letter to letter on an on-screen keyboard. Suggested words pop up as he spells, similar to phone texting, except at a much more tedious pace. Any response beyond superficial yes-or-no questions can take minutes to convey.

In the hospital room, his shirt was open, allowing him to display the intricate tattoo across his chest featuring the City of Buffalo and the words “Working Class.”

“I have been proud of where I am from,” he said. “It’s a working-class culture.”

Feliciano gained his initial graphic arts experience as a McKinley High School student focused on advertising art and photography. He graduated in 2000 and took fashion design classes in college. He didn’t finish because he was looking after his father, who was dying of cancer. But his ambitions didn’t fade.

He held modeling contracts in 2005, and from 2015 to 2017, he said. Feliciano was featured in a five-page photo spread in XXL magazine, focused on hip-hop news and fashion, when he was 20. The magazine features gorgeous and brooding, full-page images of Feliciano draped in clothing by Tommy Hilfiger, Def Jam University, Sean John and Mitchell & Ness, and footwear by Timberland and Adidas. Everything about his look sent the message: You’ll never be as cool as me.

The modeling jobs weren’t as easy as they might seem, he said.

“You have to act the part, be willing to make a fool of yourself,” he said.

Feliciano later helped develop a design company called 625, which included a group of artists who would partner with Nike to develop custom designs. He traveled to sporting events and created custom sneaker and apparel designs for athletes and the public.

Among his credits, he recalls designing and unboxing cleats for NFL players, including former Buffalo Bills quarterback Tyrod Taylor and Deshaun Watson, now the quarterback for the Cleveland Browns.

And he was invited by Nike to design custom graphics that could be heat-transferred to shoes and clothing as part of pop-up consumer events related to the Super Bowl last year, he said.

He also continues to produce his own hats, pins and apparel at his website skinnyyankee.com.

Despite his ongoing work, Feliciano said it’s a battle to stay focused and positive while imprisoned in his own body.

The urge to give up is a beast to fight.

“Anyone with ALS who says otherwise is lying,” he said. “It’s the worst disease.”

ALS, short for amyotrophic lateral sclerosis, is a progressive, neurodegenerative disease that gradually destroys nerve cells in the brain and spinal cord that control muscles and movement. It’s also known as Lou Gehrig’s disease. Feliciano has already lived past the average two- to five-year life expectancy with the disease. Though it’s possible for a small percentage to live with ALS for decades, 80% don’t live beyond five years, and 90% don’t live beyond 10.

Feliciano’s use of a ventilator helps extend his lifespan. But family and friends say he has bad days. A close friend from New York City, who dated him for a few months before he received his ALS diagnosis and helped care for him, had a front-row seat to his transition.

Manhattan resident Nefertari Green remembers meeting Feliciano in the summer of 2019. The tall, beautiful man was tending bar. When he gave her his number, she thought she was embarking on a hot and romantic relationship. But that soon transformed into a deep friendship as Feliciano came to grips with the disease.

“I think he was in shock,” Green said. “I think that’s why it took him so long for him to get to Buffalo. He really believed, still believes, that he can beat it.”

Feliciano said he was devastated when he first was diagnosed and misses walking more than anything else. He also confirmed that his commitment to triumphing over his disease and his desire to promote ALS awareness and research is what keeps him going now.

“What keeps me alive is knowing I can beat this still,” he said. “I know people who have went from Stage Four to walking and talking.”

Reversals of ALS symptoms are not impossible, but they are rare. Fewer than 1% of patients experience long-term reversals of the condition, according to the ALS Association. Friends and family say Feliciano takes a lot of vitamin supplements to improve his odds. He’s doing his part to hang onto his sense of identity.

That takes mental strength, Green said. Others would have tapped out a long time ago.

“Things are dying while he’s still living,” she said. “It’s a very lonely thing.”

Every day, she said, he makes the choice to live.

Feliciano said he wants his life to serve as an example for others.

Carmen Melendez, his mother, who lives in the Harlem-Kensington neighborhood of Buffalo, said she initially refused to believe his diagnosis, especially when he was still able to walk. Now, she said, she lights candles for him at church and prays for a miracle.

“He’s my only son,” she said. “Why did this have to happen to my son?”

She said he was being moved around nursing homes in New York City when she arranged for him to be transported to Erie County Medical Center several months ago so that he could be closer to family while he wrestled with pneumonia. Melendez praised his care at ECMC and wishes he could have remained there.

In the intensive care unit of ECMC, staff quickly took to Feliciano because of his sweet and patient personality, said Jan Ables, a palliative peer support specialist with Mental Health Advocates of WNY.

“People take to him right away and want to help,” she said.

But it’s been more challenging at the Terrace View nursing facility because temporary staff often aren’t aware of how his body and the computer need to be set up and aligned.

“They get nervous and worried,” Ables said. “They start pressing too many buttons, and all he can do is lay there. He doesn’t complain about things, but I sense the frustration.”

Feliciano continues to work with a partner to develop new designs, though he rebranded his company “Maniac” after his diagnosis. Melendez said he named it that because that’s how ALS feels to him. It makes him feel like a maniac, more obsessed with his ability to create art.

He often incorporates the “fight ALS” message in his designs. That advocacy is critically important, he said. He recounted how he reached out to all the NFL players he had met and designed cleats for over the years to let them know that he is wrestling with Lou Gehrig’s disease now.

Only two players wrote him back, he said.

There is some concern that traumatic head injuries can increase the risk of ALS, but Feliciano said no one in the NFL is eager to talk about that. Nevertheless, raising awareness for ALS is a big part of his life mission, he said.

“I have a purpose now,” he said. “I see myself as an example for others.”