Capturing a loved one’s voice

Living up once again to my “TechKnow” team nickname, the “Snow Queen,” I landed with my team in Baltimore to learn the coming storm was predicted to dump between 6 and 12 inches overnight. Given my track record, weather forecasts didn’t faze me anymore. All I knew was that I couldn’t wait to meet the first of three interviewees for our story about people living with amyotrophic lateral sclerosis, or ALS.

O.J. Brigance won the Super Bowl with the Baltimore Ravens in 2001. Diagnosed in 2007, he was told he had two to four years to live. He went public and became an advocate for people with ALS. Though eventually paralyzed, he also continued to work with the Ravens as senior adviser for player development. His ongoing work is possible through use of a computer that tracks his eye movement and allows him to select prerecorded words and phrases to communicate.

The Ravens’ facilities were beautiful. The closest comparison I could think of was an English country estate. There was a wood-paneled entrance, a fireplace over which hung giant paintings. A sumptuous grand staircase led to the luxurious location of our interview.

I was most nervous about meeting the man himself. His career achievements were highly impressive, intimidating almost. Yet I knew he would be in a wheelchair, unable to move virtually a single muscle in his body other than his eyes.

O.J.’s spirit radiated through his skin, eyes and smile. It was clear that he was acutely aware of everything that was going on in the room. His physical state could not have been a greater antithesis of the power of his mind. He glanced down at the book I was clutching — his own memoir, “Strength of a Champion” — and then looked to his computer to activate a response.

“That’s one fine book you have there,” he said, which made me chuckle. There was no point in being nervous. O.J. wasn’t interested in my sympathy. God had given him this disease, he believed, because God knew he could deal with it.

O.J.’s warmth and humility provoked an overwhelming sense of love and compassion for this man, and his energy resonated as loudly as the audible hum of an electric wire.

Still, communicating with him was slow. Life was on a different rhythm. For every question I asked, he had to type out the words and phrases using his eyes and then vocalize using a synthetic voice. Often, there would be long periods of silence between us while he worked on his response.  

It was one of the most powerful conversations I’ve ever had. The suspense in watching his eyes focus on typing sent my own mind racing: What might he say? What is he thinking? Was my question appropriate? And then came his much-awaited answer.  

With O.J., not one word was ever wasted or misstated. He made me laugh as he changed his synthetic voice from that of a middle-aged man to a younger French female, and he made me cry as he recounted the devastating time after his diagnosis. Even after almost 20 years of marriage, he and his wife, Chanda, shared the kind of spark that most people spend a lifetime trying to find. They filled me with hope and inspiration. Though O.J.’s output was limited, his ability to absorb information was on high alert, making him a powerhouse of knowledge, wisdom and understanding.  

The technology to capture and use O.J.’s own voice to communicate even after he was physically unable to speak wasn’t available to him. But he is a strong advocate that people with ALS quickly adopt the strategy, especially because so many people with the disease experience rapid physical deterioration.

In Newtown, Mass., I met Holly Ladd, who is also living with ALS. Holly was able to start “voice message banking” before losing her ability to speak, so she and her partner can continue to communicate in a way that at least sounds familiar. This method, created by John Costello at Boston Children’s Hospital, pairs Holly’s voice with the eye-tracking software. It was so powerful when Walker, Holly’s dog, came running into the living room after hearing her voice — via the computer — lovingly summon him over.

Nancy Campbell is a Massachusetts artist who took care of her mother as she died of ALS and saw firsthand the impact of the disease. Nancy allowed us to observe a session as Costello recorded several intonations of her favorite response to most requests: “Sure.”

I was also able to try using the computer system myself. Eye commands were slow and highly frustrating, especially when compared with the pace of life that we are all used to. But the ability to simply express yourself — especially to your most loved ones — when there is no other way becomes paramount. All three of the people living with ALS who I met for this story had powerful minds and strong characters — which could, thankfully, still be communicated, through the use of technology.    

To learn more about voice-banking technology, watch "TechKnow," Saturday 7ET/4PT.