To some, being “alive” is a state of being. Passive.
Not to O.J. Brigance, who once decided to “take action to live” in 2007 after being diagnosed with ALS, a devastating and crippling disease. Just as blood is still running through his veins, thoughts are still pouring through his mind.
It just takes a little longer to hear them.
During the Ravens’ preseason game against the Philadelphia Eagles, his wheelchair was stationed in the press box next to George Stewart, a longtime coach who now works as an NFL executive over officiating training and development. Brigance — once a linebacker, always a linebacker — mentioned to Stewart something he had forgotten. About 20 years ago, Stewart worked him out as a coach for the San Francisco 49ers. Stewart laughed as they talked about days gone by, flooding back all at once.
Brigance still loves remembering the days when he was a 236-pound wrecking ball who notched the first tackle of Super Bowl XXXV with the Ravens. In an interview with The Banner, he called such memories “poignant and bittersweet.”
“It was a glorious run and a chance to be among the best players ever,” he wrote. “[It is] Bittersweet in the sense that my physical capacities are nowhere near what they used to be, however I am stronger than I have ever been mentally and spiritually due to the lessons learned in our battle with ALS.”
“I am a firm believer that there is always a purpose wrapped in the pain of every situation. There’s a personal growth moment in all adversity and an opportunity to help others going through the same situation.”— O.J. Brigance
That’s not just an empty line for Brigance, who will celebrate his 54th birthday Sept. 29 with a soirée for the Brigance Brigade Foundation at Live! Casino in Arundel Mills. It takes strength to do what O.J. and his wife, Chanda Brigance, have done: become public faces of a vicious disease in an effort to help others who are walking that path with them.
The nonprofit is in its 15th year of providing grants — money that helps pay for wheelchairs, nursing care, accessibility and other necessary equipment for ALS patients — and has given out an estimated $1.8 million to hundreds of families.
Chanda calls it their “assignment,” how they’ve tried to make the best of their devastating diagnosis in 2007. O.J. called it “thrilling” to help a man diagnosed with ALS get a wheelchair he could take outside, recapturing a small piece of agency.
“I am a firm believer that there is always a purpose wrapped in the pain of every situation,” O.J. wrote. “There’s a personal growth moment in all adversity and an opportunity to help others going through the same situation.”
ALS has taken a toll. O.J. doesn’t use his limbs anymore, or his voice. He’s stationed in his wheelchair all day with a medical attendant close by. But if you listen — if you are patient enough to hear what O.J. types out on a screen with eye-tracking software — you understand just how he’s still the same “Juice.”
Last season, former Ravens tight end Todd Heap visited the team facility, where Brigance still regularly goes to work and attends practice. They started a conversation about Heap’s family and how his adult daughter was preparing to get married. Two weeks ago, when the Ravens played the Texans, Heap and fellow former tight end Dennis Pitta ran into Brigance in the tunnel — he almost immediately asked Heap how the wedding went.
“He doesn’t skip a beat,” Heap said, laughing. “I can’t think of anyone that doesn’t light up when they talk about O.J.”
Brigance is not simply a figurehead. He is living. At his home in Reisterstown, he reads the Bible daily and peruses articles about finance. He has his attendant put on his glasses to help him watch football, which he still views as “the ultimate game of cat and mouse.” His physical gestures are more subtle now, but every now and then the corners of his mouth bend upward into a slight grin.
He also listens, and he writes. His role as special adviser to player engagement is not a symbolic one. He talks to players and gives them advice. Kicker Justin Tucker cited a note that Brigance sent him in his second year, when he was going through struggles, as a seminal moment in his career and in their relationship.
“It was exactly what I needed to hear in that moment, and it came from whom I needed to hear it the most,” Tucker said. “He’s a kind man who has unreal perspective. Not just because he’s been living with ALS for a good number of years now, but his attitude, his smile, his presence, his determination and his will.”
His impact is felt well beyond players’ days on the field — that might be where his advice means the most. Gerrard Sheppard, a Towson grad who made the Ravens’ practice squad in 2013, remembers Brigance telling him then: It’s never too early to have a Plan B. Now Sheppard is married, is a father and owns a business: Sunset Raw Juice Bar.
This year, Sheppard saw Brigance at training camp and told him he couldn’t thank him enough.
“When you think about the term ‘open door policy,’ O.J. is the guy,” Sheppard said. “He’s always there. His door is always open. … When you’re talking to a legend, you zone everything else out. You’re just quiet.”
It does take a lot of will — and medical attention — for Brigance to keep living. A machine helps him breathe. His attendant and his wife have to check in frequently to make sure he’s comfortable — to wipe his mouth or adjust his body position.
Only an estimated 20% of ALS patients live past five years of their diagnosis. To make it 16 years as Brigance has is a chance roughly under 5%.
Heap was in the locker room in 2007 when Brigance told the team he had ALS. He remembers saying a prayer for O.J. but never doubting that he would defy the odds.
“I don’t know all those statistics; whatever the statistics were, O.J. was gonna be in the top percent — that’s just kinda how he’s always been,” Heap said. “That’s the greatness of O.J. He was that way before, and he’s maintained that same fight, that same personality, that same attitude towards life after.”
“My most important takeaway for those diagnosed is that living with ALS will be hard, but not impossible. It’s a fight every day, but so worthwhile to experience the precious moments of life that are yet to come.”— O.J. Brigance
There’s no O.J. without Chanda and, as a duo, their positivity runneth over. While O.J. expresses enthusiasm with exclamation points, Chanda’s bubbly presence (”Hello, hello, hello, hello!” she says in greeting) punctuates their sunny outlook on life.
That’s not to say they don’t think about what ALS has taken from them — and still takes from them. They’ve never been on a cruise together. Chanda has dreams of going to Europe, or taking a Winnebago for a road trip with just the two of them. But O.J.’s medical needs make such flights of fancy unfeasible. The trips they take are organizational feats, arranging medical care and equipment even for a day drive out of state.
Even at home, there isn’t much private time. They have the fortune of being able to get round-the-clock care for O.J., but that means there’s always at least one other person with them.
“To have a personal moment or a quiet moment, we have to specifically ask someone to please leave the room, or, ‘Please, can you give us a few minutes?’” Chanda said. “You have to always go through that: ‘Can you please step outside?’”
The Brigances have been married for 29 years, most of those with ALS (they note that an ALS diagnosis is not only about the patient but the caregiver — the entire family is affected). But even through their challenges, they have a special kind of gratitude that they still have time together, well past what they could have hoped for when O.J. was diagnosed. “We’re still O.J. and Chanda,” Chanda said with a laugh.
If there’s a reason to keep living, it’s that there are always more people to help. That’s true of Brigance’s role with the Ravens but also with the foundation. When O.J. sees stories about people diagnosed with ALS, he is drawn to them. He recently heard about the baseball researcher Sarah Langs who is also fighting ALS, even though he doesn’t know her personally.
It rekindles the frustration he once felt 16 years ago.
“It breaks my heart to hear about others who are diagnosed with ALS, because I am living the journey they will be traveling,” he wrote. “It is agonizing to learn that all of the plans for the future will hit an abrupt detour. There’s a time of grief, anger and fear.”
But there is life after that time, O.J. tells people again and again. He thinks, therefore he is. O.J. has memories, opinions, interests, jokes and the occasional quiet moment with his wife when they can share gratitude that he’s still here.
Not every day of the last 16 years with ALS has been pleasant, but they have been “precious,” O.J. wrote. And, as many days as he has left, he’ll try to do something with them.
He chooses to live every day.
“My most important takeaway for those diagnosed is that living with ALS will be hard, but not impossible,” he wrote. “It’s a fight every day, but so worthwhile to experience the precious moments of life that are yet to come.”