It’s about an hour before showtime, and Bruce Gilbert is a wreck.
It isn’t nerves. It’s Parkinson’s, a degenerative disease of the nervous system that he’s been battling for a decade. It can give him the shakes or stiffen his entire body.
That is what’s happening tonight at Lena’s Place Coffeehouse in Decatur. Bruce is a songwriter and a piano player, but he can’t perform without taking his medicine. And the medicine doesn’t always work.
Most nights, the meds peak long enough for him to perform for about an hour, then he starts to miss notes, flub chords and “fry” onstage.
This night in September, he prepared diligently. He took the prescribed doses of Sinemet, Comtan and Mirapex precisely at 7 p.m. and laid down to rest before heading to the coffee house. He avoided red meat, as protein blocks the Sinemet from entering his brain. But none of that’s working. He feels like he’s wearing a lead suit. Every finger, weak and heavy.
The last hope is an injection of Apokyn, a drug designed for what doctors call “off-episode” moments. Bruce keeps a kit with him, and one of the performers in his trio, Cyndi Craven, helps him prepare the shot. She’s no nurse; she’s a folk guitarist who’s been playing around Atlanta for years, back to the days of the The Freight Room in Decatur.
It works, a little. For the first half of the show, Bruce is stiff, but he’s able to play. The 64-year-old Atlanta resident, bald and wearing a loose-fitting tan shirt, sings his thoughtful songs, bouncy jazz numbers and plaintive ballads. But he takes less chances on the piano. More block chords that keep the rhythm going, fewer jazzy touches and fast runs along the keys.
After a handful of songs, the sensation he’s been waiting for dials in. His hands feel lighter and move more fluidly. His confidence comes back, so he decides to take a chance.
“I really want to play this new song,” Bruce tells the audience. He offers a little primer on the day’s battle with Parkinson’s. “I’ve decided I’m going to do it, hell or high water. It may be a train wreck. And while you didn’t ask, you’re going to be on it.”
The audience breaks up laughing.
The song, called “You’ve Got All the Magic You Need,” requires a lot of keyboard syncopation and counter rhythms. Bruce never gets up to a full gallop, but the applause when he finishes is genuine and generous.
Truth be told, Bruce knows he won’t be playing many more gigs before the disease completely takes over. For now, he just wants to keep the music playing.
Each performance is a kind of musical masquerade, a carefully crafted moment aimed at masking his symptoms long enough to connect his songs of love and loss and longing with an audience.
“It’s changing,” Bruce said. “It’s getting worse.”
Life steeped in music
From the moment Bruce was diagnosed in 2005, his relationship with his music changed. Before, he occasionally wrote a song. Afterward, he was writing them all the time, as though making up for time he knew he would lose.
It wasn’t until he discovered he had Parkinson’s that he recorded his first album. The last song on the record, “Try To Hold On,” begins with a slow piano intro.
Fingers don’t work right, breathing seems slow
Locked eye-to-eye with how little we know
A new look at lonely, the frailty of man
A new view of doing the best that I can
Playing music for an audience is among the most important things in Bruce’s life.
“It’s a connectedness,” he says, while giving a tour of his home in the Lake Claire section of Atlanta. “I have an opportunity to be listened to, to tell my stories, to reflect on my life lessons.”
As he speaks, his illness is evident. The hallmarks of Parkinson’s, a disease most people know through Muhammad Ali and Michael J. Fox, include involuntary swaying, shoulder shrugs and continuous writhing. When Bruce is performing, it’s less noticeable. It can appear as though he is physically engaged in his music, a little like Ray Charles used to do.
Before Parkinson’s hit him, Bruce was a successful marketing guy. He and his wife, Alexandra — everybody calls her Lex — ran a business designing commemorative tchotchkes such as Bambi snow globes for Disney.
Before that, he was a piano and sax player who notched a few significant names on his playlist, people like jazz trombonist Frank Rehak and Paul Barrere of Little Feat.
Before that, he was a teenager growing up in what was a nexus of musical innovation, Laurel Canyon in California. By the 1960s, Laurel Canyon had become the focus of the laid-back Southern California sound. It was home to musicians such as The Byrds and Joni Mitchell, who captured the place on her third album, “Ladies of the Canyon.”
Bruce started playing music at the age of 6. A key moment in his development came when a music teacher sat him down at his piano and said, “Play, but don’t think about chord changes and specific notes. Just make the piano sound like a forest.”
By the time he was 16, Bruce was going to clubs and playing organ for bands on a circuit that included up-and-coming groups such as The Doors, The Association and Canned Heat.
“I was sneaking into places where I should never have been,” he said. “There was a lot of access to drugs.”
He was in drug rehab by the age of 17, shaking off an addiction to heroin.
After moving to Atlanta about 10 years ago, Bruce gained a reputation as a great player who understood the theoretical underpinnings of music. Even his simple songs have intricate textures, alternative chord changes and unexpected turns.
“He has jazz ears,” said singer-songwriter Louis Robinson, who’s known Bruce for years. “He can’t technically do it with his hands the way he used to. But his brain makes up for it. So he plays more simply, but more sophisticated.”
Bruce is part of a musical community in Atlanta. Most are songwriters as well as players. They tend to be over 50 and distinctly acoustic in their choice of instruments. Many have known each other for 20 years or more. They accompany each other at coffee house gigs, open mic nights and on their self-produced CDs. Few dream of fame anymore. They play because they love music and each other’s company.
They have come through for Bruce again and again. Jerry Brunner, the other partner in the trio called Just Be’Cause, often doubles as Bruce’s roadie, loading up his keyboards and equipment and driving him to shows.
Bruce’s wife was the first to spot his illness, noticing something only a spouse would see. She saw that his right arm didn’t swing when he walked. It remained motionless at his side.
There’s no medical test for Parkinson’s disease. Often, doctors give you a drug and if it works, you got it. Worse, there’s no cure. So when the drug calmed Bruce’s symptoms, he and Lex had to come to terms with a disease that doesn’t kill you; it just drags you down into a spiral of symptoms that grow over the years, at times ending with dementia.
When Bruce sings the chorus of “Try to Hold On,” his voice is Sinatra-smooth, sad but without self-pity.
Feel like I’m fading, fading away
Trapped in a clock that goes faster each day
Try to hold on, fear get behind me
Sadness don’t blind me, try to hold on
Grace under pressure
Years ago, Bruce was undergoing surgery when he inadvertently woke up during the procedure. He was still sedated, so he couldn’t move or speak, and he didn’t feel any pain. But he could sense what was happening around him.
That feeling of helplessness, he worries, is what his life will be like in the end stages of Parkinson’s. He and Lex talk about that fear — of descending, he says, into an “unmoving, uncommunicative” state.
“It’s pretty horrifying,” he said. “It would feel like nobody even knows I’m in there.”
In general, though, Bruce appears to approach his illness with grace, almost as though he were a dancer and the disease were a difficult partner.
“He has something inside that is stronger than the Parkinson’s,” said Craven.
His friends have seen him become thinner as the symptoms worsen. Yet a smile is never far from his face.
Lex, of course, sees more. Sometimes when Bruce drops a package of groceries or sends some paper towels rolling across the floor, the two of them laugh.
“I break stuff,” Bruce says.
Deep down they know it’s not funny. Everyday chores take him much longer and often result in collateral damage. A broken glass, a shattered dish, a laptop flying across the room. He used to have such good hands, he recalls, so thin and long and nimble. He used to type a hundred words a minute.
Lex sees when his emotions fly off the handle, when a simple flub is followed by an explosive display of anger. She sees that he can hardly move when he gets up in the morning.
“The truth is, he’s quite scared,” she said.
Three years ago, the couple’s roles in caregiving were reversed. Lex was diagnosed with Stage 3 colon cancer and underwent radiation treatments at Emory’s Winship Cancer Institute in Atlanta.
“He would sit with me and put a cool washcloth on my head and hold my hand,” Lex recalled. “He sat with me for hours, day after day.”
The couple’s musical friends stepped up. Brunner and his wife brought over dinner once a week. Other musicians and their spouses set up a web page where people signed up to mow the Gilberts’ lawn and grocery shop.
During one of Lex’s hospital stays, Bruce heard the sounds of a piano wafting through the hallways. He could tell it was a real piano, not some recording. He followed the sound to an entrance way where a woman sat playing a shiny black piano. For a while, the music eased his worried mind.
After Lex recovered, Bruce began playing the piano there every Tuesday afternoon as a volunteer. For the past two years, it’s been his little thank you to Winship.
Playing in the lobby, there’s rarely applause when he finishes a song. Maybe a passing smile. Sometimes he gets a request. One time a woman in a wheelchair came up to the piano and asked for “Moon River.”
“She sat very quiet and softly cried,” Bruce said.
Another time, a woman appeared before him. This is the worst day of my life, she said. Listening to you was the only ray of light that came into my life this day.
When Bruce finished, he quietly packed up his music and blue pill box and returned to his own struggle.
In the moment
Another gig. Those words are music to the ears of a performer. For Bruce, it’s a solo show at The Hungry Ear Coffee House in Sandy Springs.
Bob Bakert, who books artists for the Hungry Ear, has known Bruce for years. He’s seen the effects of the illness, but still believes Bruce can fill seats.
Something more than musical happens during Bruce’s shows. Many in the audience have seen him over the years; several have played with him. For them, Bruce isn’t just another local performer to see on a Saturday night. He is an inspiration, a touchstone to the effects of aging, a reminder of what’s important.
“While his technical skills have diminished, his abilities to convey emotion through his music and lyrics is at an all-time high,” Bakert said.
On the day of the show, Bruce types out a full-page agenda for the day, balancing his diet, medicine and activities so he will be physically capable of performing that evening.
At 9:30 a.m. he takes his pills with an apple. At 12:30 p.m., another dose with half a sandwich and a Coke Zero. This “map of the day,” as he calls it, includes notes to himself such as “cool it after 3:30 p.m.” and “don’t lift anything or strain muscles.”
By 7 p.m. he’s backstage at The Hungry Ear and feeling good, focused on the general concerns of a performer about to go on stage. Is it a good crowd?
As the lights dim, there are about 100 people, almost a full house.
“When I first saw him, about eight years ago, he was the last person I would have thought to be like this,” says Rich Healy, a Norcross singer-songwriter who used to attend “picking parties” in Bruce’s living room.
Louis Robinson, an old friend, is sitting in the back. Lex is in the corner where she can see everything. Cyndi Craven is videotaping the show. One of Bruce’s uber-fans, Mark Pozner of Tucker, is saying how “phenomenally talented” Bruce is. He believes Bruce will perform for a long time.
Bruce’s performance is filled with wonderful moments. A highlight is a song he wrote for his wife, called “Alexandra.” It’s perfect for this intimate, candles-on-tabletops venue where many people know the couple’s story.
The south of France in fading light
breezes blowing colored kites
through it all one single sight so dear
sings to me and whispers in my ear
Alexandra — a special gift that only she could be.
Watching him, it’s clear Bruce works hard to coordinate his piano playing and singing with his exaggerated, often uncontrolled movements. Most of the time everything syncs, but there are moments when the storm inside him breaks free. That’s when a hand jerks in the wrong direction, or a lyric just won’t come, and he misses a beat.
He kids about the Parkinson’s, explaining to people why he has to wear a headset microphone. Turns out, he moves his head around so much that, with a regular mic, he continuously bonks his face into it.
“You could mess up your teeth,” he says.
It’s hard not to read personal meanings into his lyrics, whether or not they’re intended.
Inside out, I’m still young. But I look more like midnight than the rising sun.
Bruce performs fewer songs than expected. Instead, he gives his backup singers several solo showcases.
“I think we’ll see more of that in the future,” Robinson says quietly.
When the show ends, Bruce is exhausted. The meds are wearing off and he sits heavily in a chair, greeting people who come up to say hello.
Back home, he and Lex will focus on worries that extend far beyond his ability to perform. They think they may downsize to a more manageable home. They talk about him someday needing a wheelchair, and, further down the road, possibly moving into a care center.
But on this night, Bruce is relishing the afterglow of a show well received by a supportive audience.
And for now, that’s all he needs.
HOW WE GOT THE STORY
I first met Bruce Gilbert about five years ago, when I was playing open mic nights at Ragamuffin Music Hall in Roswell. Bruce was a respected singer-songwriter who, unlike me, played real paying gigs, and he was generous with his advice. Since then, Parkinson’s disease has taken a toll on him. I saw this story as one man’s battle against that disease. The telling expression of that is his desire to keep playing his music. But it’s also about a community of musicians that supports one another, and a marriage that adjusts when illness strikes. To hear Bruce Gilbert’s music, go to www.brucegilbertmusic.com
ABOUT THE REPORTER AND PHOTOGRAPHER
Craig Schneider joined The Atlanta Journal-Constitution in 1997. He has exposed problems with the state child protection system, personal care homes, trucking regulations and credit-card fraud. He has also done stories on his obsession with the musical “Les Miserables” and his sad attempt to meet Bruce Springsteen.
Curtis Compton joined the AJC as a photo editor in 1993 before returning to the field as a staff photographer. Previously he worked for the Gwinnett Daily News, United Press International and the Marietta Daily Journal. He has a bachelor’s degree from the University of Georgia.
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