NASHVILLE, Tenn. (WTVF) — “Your brain is tearing in two,” said Jason Shelton in front of a couple dozen choir members at Trinity Presbyterian Church in Nashville. “I want to hear the edginess and anxiety of that.”
Shelton’s job is not an easy one. At a rehearsal with Nashville’s Portara Ensemble, it was his job as the group’s director to guide his singers through the complex, emotional and unknown world of Alzheimer’s Disease.
The group performs at all sorts of venues for all kinds of occasions, but the performance the Portara Ensemble choir was preparing for back in June was particularly special: a fundraiser for the Alzheimer’s Association centered around the musical piece “Shadow and Light: An Alzheimer’s Journey.”
The piece was meant to shine a light on both the struggles and the triumphs of the disease, as experienced by those diagnosed with the illness, and caregivers – oftentimes family members -- who often can go unnoticed.
“I wanted anybody who’s had any contact with Alzheimers to be able to see themselves in this piece,” said Joan Szymko, the composer.
Some of the lyrics in the hour-long performance are not pretty. One of the 16 movements begins with the chant: “I felt a cleaving in my mind as if my brain had split.”
That’s a feeling that sisters Donna Carney and Tonia Scott have come to know well.
Carney was diagnosed with Alzheimer’s two years ago at a much younger age than is typical of the disease. Sitting in Carney’s care facility west of town, the two sisters sit looking over a scrapbook of her prolific artistic career. A large abstract mural hangs outside the door to her room.
“When people come to visit her, she shows them her work,” Scott said of her sister.
But Carney’s art has changed in the last two years. She has gradually lost some of her ability to speak as Alzheimer’s Disease has taken hold.
“It took me a long time to even say the disease, to say the word,” said Scott. “Donna was asking me all the time, ‘What's happening with me, what’s going on?’ and I said, ‘I don’t know’.”
Both Donna and Tonia attended the Portara Ensemble’s performance of “Shadow and Light” at Christ Church Cathedral in Nashville, where several of the choir members also had connections through loved ones to the disease.
“She was funny!” said choir member Elizabeth Miller, speaking about her grandmother Patricia Bernard, who was diagnosed with Alzheimer’s before she passed away.
“There’s a person and a family behind each one of these stories,” Miller said. “There’s grief and loss, but then moments of beauty.”
Miller’s path eventually led her to work as an elder care attorney, fighting for some of Tennessee’s most vulnerable.
“Each and every breath is precious, that's what it's all about for me,” Miller said, “making sure we send that message home.”
Several other members of the choir also said they had loved ones who had been diagnosed with the disease.
As the performance at Christ Church Cathedral began, both Donna Carney and her sister Tonia Scott listened to the movements that Miller and the other choir members were singing. Scott said even though her sister was in a new environment listening to the performance, she was able to communicate a message that words alone couldn’t get across.
“The way she could express herself was nodding her head and saying, ‘Yeah,’” Scott said. “I think she looked at us a couple times and said, ‘Yeah,’ like, ‘do you get it?’ And yeah, I do get it.”
The hour-long performance ended in an emotional rendition of “You Are My Sunshine,” a song familiar to many from childhood – prompting rare responses from many in the audience who were diagnosed with “Alzheimer’s,” many of them singing along.
The choir’s message rang loud and clear at the performance’s finale: for an affliction often described as a disease of darkness, there is light in love.
“That’s the takeaway,” Scott said. “Love is unconditional.”