Tim Buckley

tbuckley2@theadvertiser.com

They ponder what he once was, and how he is now, and the words are forced to fight their way out.

It's just not right, they seem to want to say.

No one should have to deal with what he so courageously does. No one should be so shackled. No one should be put in the position Orlando Thomas – Crowley High product; 6-foot-1, 225-pound former UL and NFL safety – is now.

"I watched the guy at the peak of excellence and physical ability and stature, and blowing up pro receivers and running all over the field," former Crowley High coach Lewis Cook said. "Then I looked down and there's a 140-pound guy in a bed that can't move a muscle."

Cook calls it "heartbreaking."

He's not alone.

"He was a great, great player. A great leader. He was loved by everybody that played with him or coached him," said Chicago-based Mark Bartelstein, Thomas' longtime agent. "Everybody who was ever around Orlando Thomas loved the guy.

"It's heartbreaking to see what's happened to him – yet he continues to fight. And he's surviving. It's amazing to me he's still with us."

In October, Thomas will turn 42 years old – coincidentally his number at UL, where he played from 1991-94, and one of the two he wore during a seven-season career with the Minnesota Vikings from 1995-2001.

Just more than 10 years ago, he was diagnosed with amyotrophic lateral sclerosis – Lou Gehrig's disease, as it's commonly known.

Sound familiar? If not, perhaps ALS does.

It's what inspired the ALS Ice Bucket Challenge, a social media-driven phenomena sweeping the country the last month or so in which celebrities and common folk alike dump cold water over their head and/or donate money to aid research of the incurable disease.

Named after the New York Yankees first baseman whose career was cut short at the age of 36 and whose life was too at 38, Lou Gehrig's is a progressive and fatal neurodegenerative disease that affects nerve cells in the brain and spinal cord.

It does so in the meanest of ways – brutally killing motor neurons and ultimately incapacitating the brain's ability to initiate and control muscle movement.

Yet while the muscles atrophy and eventually are disabled, senses of sight, smell, hearing, touch and taste remain intact and the mind frequently remains unimpaired.

"It's hard for me," said Bartelstein, who has both visited Thomas at his Acadiana-area home and communicated with him via video.

"I mean, this is a guy was built out of granite. He was just a physical specimen. Then you go down and see him, and to see in the condition he was in – it's hard to breath."

For both patient and visitor.

"There can't be a more-maddening disease than this," Bartelstein said. "Because your mind moves perfectly, and everything else just slowly, slowly comes to a stop."

Ronald Gunner – a.k.a "Big Cheese" – can attest.

An ex-UL lineman, Gunner's first college roommate was Thomas. He is now offensive line coach at Comeaux High, where Thomas was working as an assistant when he first started noticing something amiss.

Thomas would touch his triceps muscle, and it would twitch.

"Every now and then it would just shake by itself," Gunner said.

Gunner recalls that being late in 2003.

In 2004, shortly after Thomas had accepted a coaching internship with the Arizona Cardinals under ex-Vikings coach Dennis Green, the diagnosis was made.

By 2007, everyone knew.

Before long, Gunner had seen his friend go from sideline to wheelchair to flat on his back.

"That cat could run a 4.4 40, 4.5 40, when he got in the league – and now he's bedridden," Gunner said.

Thomas can't sit up on his own, yet he's somehow raised a family from his bed. He can't talk, but he can communicate through his wife Demetra. He can't breath on his own, and instead does so via a ventilator and suction pump that require constant monitoring.

It's been that way since around 2008.

"My Mom died of a stroke. That was fast. … For ALS, there's nothing wrong with you as far as your mental capacity," Gunner said. "You know people who are your friends, you still know what's going on.

"Orlando still plays cards with his eyes, and he loves dominoes. But he just can't do all that stuff. We walk in there, you can feel that he wants to smile – but he can't.

"I know this is being selfish," Gunner added, "(but) I almost wish I would have Alzheimer's to where I don't even know that I'm losing it. What he's going through, that's cruel."

It is.

But longtime NFL quarterback Jake Delhomme, a former Thomas teammate at UL, has another take.

"I'm a big believer in 'The Good Lord gives you things you can handle,' " Delhomme said.

Delhomme hasn't seen Thomas in quite some time, but receives updates whenever he sees Gunner.

"The person I think you remember is the vibrant, loud, fun-loving, loved-the-game-of-football guy," he said. "Then you hear of how he is now – he communicates through eye contact with his wife – it's almost hard to believe.

"But as Big Cheese says … 'I can look in his eyes and I can see in his eyes that same light, that same Orlando, is still there.' That's pretty powerful when a close friend says that."

X X X

Cook, now Notre Dame High's head coach, has known Thomas since he was in eighth grade and coached him at Crowley High. He also coached him for a few seasons as an assistant at UL.

Cook visits Thomas now, but finds it hard.

Thomas' NFL path was arduous too.

"If people know what he went through to get where he got," Cook said. "I mean, the kid weighed 98 pounds in the ninth grade. He was 13 years old when he got to Crowley High, and played seven games his senior season as a 16-year-old.

"So he wasn't this high school All-American. He was still growing. He was just a pup, and had to fight and scratch just to get to college football and then to become such an effective pro player."

But Thomas willed his way through, just as he's tackled some roadblocks.

"From the day I met Orlando, he's had such great pride," Bartelstein said. "He's a self-made guy, from a tough, tough, tough neighborhood.

"I just think the way he's wired, he doesn't look for pity. … He's one of those guys who just always, always has a positive view on life. Always."

Bartelstein remembers when Thomas – who played on the 1998 Vikings team that went 15-1, and was among 100 nominated for a 2010 Top 50 all-time Vikings compilation – went down in a 1996 playoff loss to Dallas.

"I was devastated for him," he said. "Here was a guy – he had (nine) interceptions as a rookie (in 1995), and he was on his way to being the best safety in the NFL, no question – and he tore his ACL.

"Back then, that was a much more devastating injury than now. And he was like, 'Oh, don't worry. I'm gonna be good. I'm gonna be great.' He would not feel sorry for himself."

X X X

The positivity is perhaps what keeps Thomas' wife Demetra going.

They met at a Minnesota car wash. She was schooled as a nurse, and as fate would prove it's in her nature to dial up devotion.

It's little wonder, Bartelstein suggested, that Demetra had no idea what the Ice Bucket Challenge was when his office sent her video of him taking it on Orlando's behalf.

"Every day is a full-scale, full-time, job, just kind of fighting through every day," Bartelstein said. "Demetra has her hands full every day. So she doesn't really deal much with Internet and social media and all that stuff, because she's taking care of Orlando and her kids."

Orlando and Demetra have two children, and Demetra another from a prior relationship.

"You talk about where he gets a lot of his spirit and energy? He gives so much of that to her, and she gives it right back to him," Bartelstein said. "I've never spoken to her where she's not incredibly positive. Her patience, her support, her compassion, everything – it's incredible."

When Orlando lost his voice, Demetra became it.

By all accounts, he's well beyond the stage of using modern technology that allows some ALS patients to speak through a computer.

So they communicate, and she translates, via eye-blinks. She rattles off letters of the alphabet, he blinks when she arrives at the one he wants. She then turns letters into words, and words into sentences.

"I'll be talking to her and she says, 'Hold on a minute; Cheese wants to know' such-and-such,' " Gunner said.

She asks Thomas. He responds.

"I mean … how do you do that?" Gunner asked.

"She does it so fast. It's amazing. She's heaven-sent. I just wish she had some kind of way where she could get more relief. But she doesn't want it. … She's a great wife."

X X X

When Thomas turns 42 on Oct. 21, Demetra wants to throw him a party.

More and more lately, though, visiting is tough.

Cook wanted to bring UL coach Mark Hudspeth to see Thomas earlier this month, but they were advised to hold off.

"When I called his wife as we were trying to set it up, she said, 'Coach, it's just not a good time right now,' " Cook said. "Not that he's doing any worse than he has been.

"It's just that football season takes him to a place where he was before he had the disease, and he kind of gets, I guess, riled up … and it's hard on them to try to help him."

It seems certain senses really are there, though.

"You're the one that's sad (when visiting)," Gunner said. "But like his wife told me … 'You don't have to feel guilty. It happens to be what the situation is.'

"But it's tough, man. If he didn't know any better, we'd be OK. But he knows. When we put on the Vikings on Sunday, man, he gets excited. When we talk about Crowley High School or UL – he loves that stuff.

"I bring him old film," Gunner added, "and he knows when he's about to make a big hit."

Back in the day, Thomas sure could hit.

Which got Gunner to wondering …

"He was reckless out there on the field. … This guy would lay his body into you," he said. "So I'm thinking he got a lot of that from football."

In January 2013, the National Institute for Occupational Health and Safety sent those who played at least five NFL seasons from 1959 to 1988 a summary report of a study of brain and nervous system disorders among 3,439 players from that era.

Among the findings: "ALS was four times higher among players (than non-players)" and "seven players died with ALS compared to fewer than two men … from a similar group of men from the United States population."

Delhomme was teammates in New Orleans with ex-Saints defensive back Steve Gleason, perhaps the most highly visible ex-NFL player afflicted with ALS. He also was teammates for a season in Carolina with Tim Shaw, who finished his NFL career in 2012 and announced last week that he's afflicted.

"First it's Orlando, then Steve Gleason, then again with Tim Shaw … It really makes you take a step back," Delhomme said, "and, gosh, just appreciate everything that we have, just knowing what these guys are going through and, in someone in Tim's case, what he is about to go through."

"I could be wrong. I promise you I could be wrong," Gunner added. "But to be the performer (Thomas) was, then all of sudden that happens, you've got to think of something."

X X X

Last spring, some at UL thought of another way to honor Thomas – who already was among just seven ex-Cajuns with their numbers retired, along with Delhomme, Brian Mitchell, Damon Mason, Brandon Stokley, Glenn LaFleur and Tyrell Fenroy.

They created the Orlando Thomas Courage Award.

Its first winner: Thomas himself. Delhomme presented it, Cook accepted on Thomas' behalf.

UL football operations director Troy Wingerter, another ex-Cajun teammate of Thomas, said the award goes to "the person who embodies the spirit of a Ragin' Cajun" and is a "beacon of intestinal fortitude."

Those who know Thomas best say he's just that.

"His courage and just his spirit, it's unbelievable," Bartelstein said. "All he ever wants to do is tell me thank you for this or (that). … He's appreciative. Can you imagine being in that state, and you're thanking people? He's incredible. I don't even have the words to describe it."

Yet somehow those words keep coming.

"He always wants to know how am I doing, how is my family doing, how are the people in the office doing," Bartelstein said. "Every conversation is so upbeat. He's worried about everybody else – and here he is, and the only thing that works in his body is his brain."

Bartelstein recalls the phone ringing last year, when his son Josh Bartelstein captained the University of Michigan basketball team that lost to Louisville in the 2013 NCAA title game.

"(Josh) was a big, big Orlando fan growing up. I mean, his guy was Orlando," Bartelstein said. "And when Michigan was going through its run … (Orlando) was having Demetra calling and (saying), 'Watched Josh tonight, rooting for Michigan.'

"I have never seen anybody put up a stronger fight, with more dignity, and more class, and courage, than Orlando. Yet his story really has never been told much. … I don't know why."

X X X

Late in 2009, Thomas' story was told a lot.

Too much.

Published reports said he had died.

The supposed passing was first reported on the Vikings' website. The Associated Press ran with it; a teammate even eulogized him. The Vikings site later apologized, though, and blamed an unidentified UL source.

In early 2010, then-Daily Advertiser sportswriter Bruce Brown profiled Thomas.

"Overcomer – that's what Orlando's legacy will be," Demetra Thomas told Brown. "He is a great example of what it means to live life. He represents life and life's energy. … His personality hasn't changed. Every day is a holiday."

Thomas, speaking with help from Demetra, recalled his freshman season at Crowley – "I was so weak I couldn't bench press the bar," he said – and the state title the Gents won when he was a senior who could bench 300 pounds.

He talked about the pride of receiving his UL degree, and of getting selected in the NFL Draft's second round.

For a couple months in 2013, Thomas – with the help of friends – even took to Twitter. He cheered for the New York Knicks, called for the Vikings to win "the big one" and even tweeted a photo of him in bed, medical apparatus in place.

"My first symptoms were muscle weakness, then there was constant twitching," Thomas tweeted. "I knew something wasn't right."

Beyond that, though, Thomas has quietly has fought the good fight sans fanfare.

"People have forgotten about him," Wingerter said.

Not all, though – especially not now.

When the Ice Bucket Challenge went viral through the efforts of Pete Frates, an ex-Boston College baseball player afflicted by ALS, Bartelstein's Priority Sports staff tweeted video of the agent taking it.

"People are having a good time with it, and having a lot of fun," Bartelstein said. "(But) does everyone understand what it's really all about, and the level of suffering the people who are afflicted are going through? These are real people suffering from the worst disease there is.

"I wanted people to put a name with this, and (help others) understand the story of what people are going through."

Wingerter was challenged by ex-UL line coach Ron Hudson, and wore Thomas' old 42 when he accepted.

He visited Thomas shortly after UL's 2011 New Orleans Bowl win, then watched Gleason get honored before the Cajuns won the 2013 New Orleans Bowl.

"All I could think about when we were sitting there listening to Steve Gleason talk was how one of my teammates … was back at home," he said.

UL's Hudspeth and other Cajun coaches took the challenge. Lafayette City-Parish president Joey Durel accepted in front of the UL football team and mentioned Thomas by first name.

Cook was challenged too.

"So I went over to Crowley High and got (Thomas') jersey," he said, "and I told my (Notre Dame) team after (last Thursday's) scrimmage at St. Thomas More, 'You guys don't be mad at me, but I'm gonna be standing on that field (Friday) with a green Crowley High No. 13 jersey to do this challenge in honor of Orlando."

So the ice gets dumped, and donations for ALS research – supposedly at least $30 million more than the same timeframe a year ago – roll in.

All challenged with Thomas in mind hope it really does make a difference.

"Financial assistance for researchers obviously is the backbone to finding a cure for anything," Delhomme said. "What if something as simple and fun as dumping ice water on you leads to a breakthrough? Can you think of how powerful that is?"

X X X

Cook wonders what Thomas would be doing now if it weren't for ALS.

"I don't know if he would be (at Comeaux)," he said. "But he would be coaching somewhere around here. He'd be at these UL functions, and I know he'd be excited to see them doing the way they're doing."

But he can't be there.

Cook deals with that. Bartelstein does too.

"I know he's here today because he's just such a strong-willed person," the ex-Crowley coach said. "Here's what he told me: He said he runs this house from that bed. 'It's mine. It's mine.' "

"It hit really home with me, because he's in my thoughts all the time," the agent added. "He's such a better man than I would ever be, because there's not an ounce of self-pity whenever I talk to him."