Seven years after OJ Brigance played on the Baltimore Ravens’ Super Bowl-winning team during the 2000 season, he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Knowing that the disease would take his mobility, he and his wife, Chanda Minor-Brigance, had to figure out how to adjust to a new normal.
“When OJ was first diagnosed, we knew nothing about ALS,” Minor-Brigance said. “How you prepare for something like that – a life-changing thing – I don’t know. But we were not prepared.”
They learned about ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, and about the care OJ would need as the disease progressed. Minor-Brigance became his primary caregiver.
The Brigances became aware of the struggles that many people living with ALS face in getting the care and the equipment they need, and they saw a way they could help. In 2008, Chanda and OJ founded the Brigance Brigade Foundation, which helps equip, encourage and empower people living with ALS.
“Of course OJ and I would not have chosen this way to be helpful to people, but guess what? It was chosen for us,” Minor-Brigance said. “We believe that God has given us the resources and the tools to walk this journey, and he’s given me, as a caregiver, the tools that I need to walk this journey as his caregiver.”
“Sometimes, if you see someone going through a challenge, you say, ‘Oh my God, I could never do that,’ but when you’re faced with it, you dig deep. And you realize, OK, I’ve got to do it,” Minor-Brigance said.
Now living in Baltimore 14 years after OJ was diagnosed, the Brigances continue the foundation’s work. Minor-Brigance recently published a children’s book, Who Cares?, that explains caregiving, ALS, and disabilities, using child characters modeled after her and OJ to tell their story. The first in a series of four books, Who Cares? teaches kids about differences among people, what caregivers do, and how to be compassionate and caring.
The target age range is for kids up to the age of eight. “But so many adults love it, too, and they sit there reading it with their kids, and the kids ask questions about what they see in the book, like the feeding tube,” Minor-Brigance said.
“You often see someone out and about in a wheelchair, but how did they get to that point? What helped them be able to get to this point?” Minor-Brigance said. She decided to write the book to shine a light on the caregiver who helps this person get up every morning and with all their personal needs.
Caregiving is difficult work. “It really takes strength, and I don’t mean just physically, but mentally and emotionally,” Minor-Brigance said. As OJ’s primary caregiver, she manages a few other caregivers who are in and out of their house every day, so she’s always on call. Sometimes this means dropping everything – even if she’s standing in line at the grocery store – to deal with a problem that arises.
Caregivers, especially those taking care of loved ones, may be so involved in this work that they don’t take adequate care of themselves, but they should be celebrated, Minor-Brigance said.
Some people inherit ALS, but for the rest, the cause isn’t known – it may be a complex interaction between genetic and environmental factors. A 2019 review of studies found that professional athletes in sports prone to concussive head and cervical spine injuries, such as football and soccer, have an increased risk of developing ALS. More than 15 NFL players have been diagnosed with ALS.
The Brigance Brigade Foundation supports research for a cure, but until there is one, the foundation provides funds and resources that help meet the immediate needs of people living with ALS. The biggest need they see is caregiving.
Because people with ALS lose their mobility, they may need to be lifted in and out of bed, someone to operate a lift, and someone to operate the wheelchair if they can’t, so the costs are staggering. The foundation provides grants for caregiving services, equipment like wheelchairs, and home modifications for accessibility.
Brigance can no longer speak himself but communicates through a computer that uses eye-recognition software that allows him to select letters by staring at them, to form words and phrases, which he then sends in an email or text or has the computer “speak”.
He still serves as the Baltimore Ravens’ senior advisor to player development, a position he has held since 2004. The role is akin to an off-the-field coach, to advise players on decisions about business, finances and going back to school, for example. Before the pandemic, players would come into his office “and just chat with him about life. You know, he’s a veteran – he’s been there, he’s done that, he’s been in this game 14 years and then off for another 14,” she said.
OJ Brigance told the Guardian by email, “One of the greatest gifts that we can ever give others is to share the life experiences from which we have gleaned wisdom. The opportunity to speak words of encouragement into the lives of the Baltimore Ravens has been very fulfilling. Getting the chance to interact with the men provides one more layer of purpose to life.”
Brigance pointed out that Minor-Brigance is sharing her experience in a similar way through Who Cares? “She is sharing her gleaned knowledge of being a caregiver in a fun way. From her own life experiences, she displays to our next generation, just because someone is different, they need friendship, caring and love just as we all do.”
The Brigance Brigade is hosting a virtual run/walk on 23 May to raise funds. The event is typically in person but moved online because of the pandemic. The pandemic has changed many people’s lives, and ALS patients still need help.
“There is no playbook for a family when they have been diagnosed with ALS,” Brigance noted. “The Brigance Brigade Foundation has been a trusted resource for many families looking for guidance in walking this journey. And for that, Chanda and I are extremely proud.”
Over the last 14 years, the Brigances have learned to be patient and understanding toward each other in new ways, as well as to lean on each other’s strengths, Minor-Brigance said.
“Chanda has been the ultimate picture of strength, grace, and love,” Brigance noted. “She has given me so much during this season of testing with ALS. I am so proud of her for taking her real life experiences and teaching everyone how to show kindness in the face of adversity!”
The Brigances have learned what they’re capable of. “We’ve been able to do some things that we did not realize were really in us,” Minor-Brigance said. “We have really taken and made lemonade out of lemons, as far as being there to help others and to show other caregivers how to be there for their people living with ALS.”