Chanda Brigance has been by her husband’s side from the beginning. With O.J. Brigance trapped inside his own body, only able to move his eyeballs, Chanda has been the one to walk for them both since O.J. was diagnosed with amyotrophic lateral sclerosis (ALS) on May 16, 2007.
With the 11-year mark of O.J.’s diagnosis coming up, Chanda is also nearing the same benchmark of being a caregiver to her husband, who was once a picture of health as an NFL player for the Baltimore Ravens.
O.J. spent seven years in the NFL, was a part of the Ravens’ Super Bowl-winning team from the 2000 season and, after retiring from the NFL after the 2002 campaign, became the Ravens’ director of player development.
“The first thought I had was that I didn’t drink, smoke and I worked out excessively,” O.J. wrote in an email, using only his eyes to operate a computer screen. “I was 37 at the time and couldn’t believe I could be dead by the age of 40. It didn’t seem fair or right at all.”
O.J., the Ravens’ senior adviser to player engagement, wasn’t supposed to live this long. On average, the prognosis for those living with ALS is two to five years. That’s what all the experts, predictions and studies said. But here he is, 48 years old and prepping to attend the Brigance Brigade Foundation’s annual 5.7-kilometer run Sunday, ahead of ALS Awareness Month in May. In 2008, the couple created the foundation to “equip, encourage and empower” those who are living with ALS.
“From day one, I have professed my intention to defeat ALS,” O.J. said. “While the disease has robbed me of many physical capabilities, my mind remains sharp and my will unbreakable!”
The run at the Canton Waterfront Park in Baltimore is one of the biggest events of the year for the foundation, raising funds to help ALS families. Proceeds from the event will aid those who are battling ALS — both those living with ALS and those around them, such as the CALS. A CAL (caregivers for those who are living with ALS), as Chanda calls herself, is an essential backbone for those who are living with ALS.
“At the end of the day, that PAL [a person living with ALS] needs that caregiver,” Chanda said. “Being a caregiver is very important, and we have to remember to encourage them . . . because they can get burned out as well.”
Part of the couple’s foundation is Chanda’s Caregiver Corner. It was created to provide a platform for nonmedical professionals who help care for those living with ALS.
“I think connecting with other PALS and CALS, caregivers of people living with ALS, helps to encourage and uplift,” Chanda said. “There are quite a few of us who are walking this journey, and we are stronger together than individuals, so let’s lock arms and walk this thing together.”
When O.J. was diagnosed with ALS, neither Chanda nor O.J. knew exactly what the disease was. They typed “ALS” into the computer and discovered that there was no cure and no real treatment. Chanda said they are still learning, but they continue to support the scientists who are working to find the cure, getting involved in studies that further research the racial and ethnic differences across ALS cases.
“We have a long way to go,” said Janel Johnson, a scientist at the National Institute on Aging. “As of now, there is only two medications for ALS, and what they do in their life span is they don’t alleviate the symptoms or anything like that. It is hard to tell how close we are because we are making progress and increasing progress every single year.”
O.J.’s prognosis has not changed, and doctors aren’t certain how much longer he will live. He has already defied expectations; just 10 percent of people living with ALS survive past 10 years with the disease. Chanda describes her life as a continuous journey, always trying to stay upbeat and conscious of the perceived challenges ahead.
“Yes, it is going to take strength,” Chanda said. “Yes, it is going to take reaching deep, but that is a choice I make. That is a choice O.J. makes because at the end of the day, there is a purpose in this.”
The Ravens also have helped. The organization has “taken a step closer rather than further away,” according to Chanda. O.J. is still working for the Ravens and going into the office to be around his friends with the team. He is a signal of strength, the purest example of a “life coach,” said Harry Swayne, the team’s director of player engagement.
As O.J. and Chanda continue to share their experiences with others, they seek to provide hope for those who are either starting or nearing the end of their journey with ALS.
“At the end of the day, we will all have to come together, rally together, support one another,” Chanda said. “We are stronger together than we are apart.”
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