In 2012, when Tyler Millard wrote the song “Alive”—now available on iTunes, with proceeds going to the Foundation Fighting Blindness—he was having a rough time. Since being diagnosed with retinitis pigmentosa (RP) seven years earlier, he’d lost enough eyesight to have to give up his plans to teach math. He’d also taken up the guitar and was singing and songwriting, although the gigs were few and far between.
“I was starting to feel—and I don’t know if this was just in my head—but I felt like people were thinking of me in a sort of a pitying way. And I didn’t pity myself,” Millard recalls.
That would explain the song’s lyrics, including these:
When the colors fade and the world goes gray
You don’t know where or when
But at the end of your rope is an ember of hope
Glowing there within
Today, Millard’s the leader of a band, with one self-made album under his belt and a professionally produced song that’s the result of his ties to FFB. One of the song’s producers, Todd Morris, “is a family friend,” he explains. “I went to college with his niece. But he also knows Marilyn Green”—a Foundation board member. “She asked me to attend a Dining in the Dark last year, to play some music and speak, if I wanted to. I did both.”
The 31-year-old North Carolina resident also obliged Morris when he asked for a tune that could possibly serve as a theme song for FFB. “It didn’t take me long to think of ‘Alive,’” Millard says. “Because it was so personal, I’d never played it for an audience before.” But he reworked the song and gave it to Morris, who, along with co-producer Harry Smith, lined up a recording session with studio musicians at the renowned Blackbird Studio in Nashville.
Morris had one more surprise. He showed up at the session with blindfolds and suggested everyone play the song wearing them. It made sense; like Millard, he’d attended an FFB Dining in the Dark, where attendees eat their entrées blindfolded, to get a glimpse of the everyday challenges people with vision loss face.
“We rehearsed the song a few times, so the musicians could get familiar with it, and then they tried the blindfolds,” Millard says. “It was like a challenge, and they did it in one take. The keyboard, guitar and drums you hear on the recording—all done blindfolded.”
“I’m a little ashamed it’s taken me this long to get involved with the Foundation,” he says. “But I’ve learned a lot from Marilyn”—who also has RP—“about the great research it funds. It seems like a very exciting time.”
Millard’s right. A gene therapy for certain forms of RP was tested in a successful clinical trial and may be approved by the FDA within the next 12 to 18 months. The Argus II “bionic retina” was also funded, in part, by FFB, and roughly 20 retinal-disease treatments are in clinical trials.
Millard says that, when he was diagnosed, at age 21, it didn’t come as a complete surprise. Since his teen years, he’d experienced night-blindness and, while playing high-school soccer, couldn’t figure out why he had trouble seeing the ball. “So when the doctor told me,” he recalls, “it was a relief to know there’s a name for it, and I didn’t have to fear the unknown.”
His vision loss, he adds, “has been pretty steady. I sometimes use a cane and have less than 10 percent left.” It does not, however, prevent him from helming The Tyler Millard Band, which plays in and around his hometown of Greensboro, N.C. And he has the technological tools he needs for his biggest passion—songwriting. “It’s like they say—when you do what you love, you never work a day in your life,” he says.
With “Alive,” he can also inspire those with retinal diseases. “I really want them to know there are others who feel the same way,” Millard says. “I once thought it would be devastating to lose anything so integral to life. But now I know I’ll make it through. Family and friends are there for you, and you can still do whatever you want. The human spirit goes on.”