Last summer, the Ice Bucket Challenge brought widespread attention to Amyotrophic Lateral Sclerosis, the disease that is best known as ALS or Lou Gehrig’s Disease.
The videos that seemed to go up by the minute all summer long—people having buckets of ice water poured on to their heads as they challenged others to do the same and donate money to ALS research efforts—brought a smile to the face of O.J. Brigance. But then again, it’s not often that Brigance, a Super Bowl-winning linebacker for the Baltimore Ravens who was diagnosed with ALS in 2007, isn’t smiling.
Even as he’s lost the ability to walk and speak over the last eight years, Brigance, 45, seems to have never stopped smiling. He shows up to work five days a week as the Ravens' senior advisor for player engagement, showing all those around him what it means to push on.
"When I received my diagnosis back in 2007, my wife Chanda and I were stunned," Brigance says via email. "We first had to research exactly what was ALS? We discovered it was a fatal disease with no cure. I didn’t drink or smoke. I trained my body religiously, so there was no way this could be happening. The average prognosis for ALS is two to five years to live from onset."
The only inkling Brigance, who retired from the NFL in 2003, had that something was wrong was a loss of strength in his right arm he felt while playing racquetball. Chanda noticed while O.J. was sleeping one night that some of his muscles were, as she described, "jumping." After going through a series of tests, Brigance was given the diagnosis that changed his life forever.
"It was a tough pill to swallow that I could be dead by my 40th birthday!" Brigance says. "Chanda and I grieved and cried at the possibility. When we were finally able to view our situation through the eyes of faith, we realized every moment in our lives had prepared us to be great witnesses of living life to the fullest, regardless of our circumstances. We dried our tears and asked God, 'What do You want us to do with this,' and the Brigance Brigade Foundation was born."
The foundation strives to help those who’ve received the ALS diagnosis deal with the disease as best they can by assisting them with the financial burden that lands on ALS patients when they need wheelchairs, vans and other equipment. Brigance needs a ventilator to breathe. He communicates through a computer with an electronic voice. The computer tracks the movement of his pupils, allowing him to type with his eyes.
Brigance realized, as bad as he was suffering, others living with ALS may have it even tougher, because they may not have the financial means to improve their quality of life.
"It was in 2008 that I found purpose in the midst of ALS," Brigance said. "My first realization was the platform I had been given as a professional athlete could be very advantageous to raising awareness about ALS. Secondly, I discovered the exorbitant costs to live with ALS, even if one would choose to take life prolonging measures, such as going on a ventilator. That is when we decided to raise money to help PALS (people living with ALS) and their families to purchase the durable equipment and services to help with day to day living with ALS. We have awarded communication devices, wheelchairs, home generators, built ramps and provided home nursing care. All with the purpose of helping PALS have the very best quality of life possible. I am very proud of what we have accomplished, however there are so many others who need help. That is why we will continue to seek support from everybody we can touch to address the need."
The Brigance Brigade just hosted its second annual 5.7K Championship Run (5.7 because 57 was Brigance’s jersey number with the Ravens). More than 1,400 participants raised $175,000.
"We wanted to design a signature event to help support the mission to equip, encourage and empower those living with ALS," Brigance says. "We have garnered tremendous support in a relatively short time. The Foundation is very thankful. We have been blessed to help others."
Brigance’s courage is on display at the Ravens’ complex each day when he shows up to work. For as much as ALS has taken away from the man who made the very first tackle in Super Bowl XXXV—a blowout win over the Giants—Brigance seems to never stop smiling. Ray Lewis, the Ravens' former defensive leader and a man who took pride in his ability to motivate others, did not shy away from using Brigance as an example of extreme mental toughness. In a video taken during the 2013 playoffs, when the Ravens were on their way to another Super Bowl title, Lewis had Brigance in the locker room, in front of the entire team.
"He’s the example of what it means to be faced with crucial circumstances," Lewis said, pointing to his own temple. "And because of your mindset you can live through anything."
In his typical self-effacing way, Brigance downplays the role he plays with the Ravens: "I don’t have a job, I found a passion. I have an opportunity to speak into the lives of some extraordinary men. They have provided me encouragement, love and support from day one of my diagnosis. And I can’t say enough about the Ravens organization for their thoughtfulness and provision. The team has been a blessing to us so that we can be a blessing to others."
While clearly inspiring others, Brigance has his own inspiration in his wife of 22 years.
"Chanda didn’t sign up for this, but has stood by my side with unwavering strength and fortitude," Brigance says. “ALS isn’t easy for the person who has it or the family members. It is a tremendous sacrifice to be a caregiver. I am beyond grateful to have her as my wife."
He also says that living with ALS has helped him realize some of what he calls, "shortcomings" in relationships he had not cared for properly while pursuing some of his personal goals.
"Time is the one thing that is not redeemable," Brigance says. "Once it is gone it is gone. We should make the most of every moment in our relationships and life goals."
It’s been a challenge, but Brigance still smiles.