Pianist Desirae Brown looking at uncertain future because of rare eye ailment
By Sharon Haddock, Deseret News
DRAPER — When the audience sees one of the 5 Browns — currently on a multi-city concert tour — walk out on stage wearing shades, it raises some questions.
Why would one of the five pianists who’ve changed the way people view classical music be sporting sunglasses? Is she going for a Hollywood look? Did she walk into a door?
The answer is sobering.
The truth is Desirae Brown literally has to look at the world through rose-colored sunglasses as she deals with permanent vision loss in one eye and a threat to the other.
Bright lights hurt.
The Utah pianist from the famed and talented 5 Browns has been robbed of her sight in her left eye. But the 31-year-old Brown, self-proclaimed as “just kind of ridiculously optimistic,” isn’t letting a serious eye problem cloud her faith or her future.
The loss of sight is the result of a rare condition that “only a handful of doctors have seen.”
Sitting comfortably in her Draper home with the lights low, Brown tells how it all started almost two years ago on a tour in South Carolina.
“My vision in that eye started to go really foggy and blurry,” she said. “I went to the ER and they told me they thought I had pink eye. Three days later, I noticed it getting darker. My husband sent me right off the plane to the Moran Eye Center when we got back to Salt Lake.
“It took a while to diagnose it because this is so rare.”
Brown has acute retina necrosis, a condition caused by the chicken pox virus that lingers in the system and sometimes comes back in adults as shingles or, as in her case, an attack on the retina.
It usually attacks both eyes. Brown, her husband and her four siblings are praying that her right eye will remain good.
The challenges that have come from dealing with the one eye’s problems have been enormous.
She has slowly lost the vision in her eye and the pupil is permanently and fully dilated.
Desirae had undergone multiple surgeries and steroid injections.
“Because I’m so young (she’s 31), my immune system has reacted and scar tissue has built up. Little cysts form that have to be scraped off.”
At first the condition wasn’t painful, but like dominoes, one loss led to another until the retina detached and bright lights started causing headaches.
“The last concert with the Dallas Symphony, I could see a little bit. Then it was gone,” Desirae said.
She was informed that her vision in that eye would never return.
So she started teaching herself to play the complicated, fast-paced, piano pieces with one working eye, reorienting her center of vision.
“I remember going to the keyboard and it was so scary, I just left. Over the next few weeks, I tried to acclimate myself. At first, I felt like I couldn’t hear either,” she said. “It was just a scary process.”
Desirae says she’s had to work 50 percent harder to learn new pieces and retrain herself on familiar pieces. Their signature five-part pieces depend on absolute spot-on timing and precision, so they’re always watching one another for visual and musical cues.
Her brother Greg, one of the other four Browns, said listening to each other during performances is as critical as watching, and he hasn’t noticed a difference in Desirae’s playing.
“It’s been pretty scary for her but I haven’t noticed it’s changed the way she plays,” he said.
Greg Brown said the first priority is and always will be each other.
“Obviously, we hope to keep playing together,” he said, “But we’ve always said this, our relationship with each other, is the most important thing.”
All of the Brown siblings say Desirae’s health is their first concern, with the impact on the group secondary.
Desirae has pleaded for blessings from heaven and has had a lot of priesthood blessings along the way.
“I feel like I know where the source of happiness and peace is. If I didn’t have that, it would just close in on you,” she said.
She originally prayed to get better, but she prays differently now.
“There comes a point when you have to put your will on the altar,” she said. “You have to just accept what is.”
Desirae acknowledges that it’s been her life experience to pretty much get what she goes after if she just worked hard enough. She and her siblings fought hard to get into the Juilliard School of Music and to launch the successful, classical music career they have.
She knows her vision troubles threaten everyone’s future, but her brothers and sisters have been careful not to pressure or push her.
They are sympathetic and allow her time to heal after each surgery, sometimes replacing her on stage with their arranger, Greg Anderson. (The past few weeks, Deondra, one of the sisters, has been off the piano bench on maternity leave. She just had a baby girl two weeks ago.)
“They’re concerned. They feel powerless,” she said. “And I would way rather it be me than them.”
Greg Brown takes a moment during each concert to explain why Desirae is wearing her oversize, dark shades. Desirae says that actually helps her relax rather than sit and speculate on what the audience is thinking.
Right now, she’s enjoying a relatively peaceful stabilization period. Doctors are trying to create a contact lens for the left eye that will match her good eye and block light into the damaged pupil.
She’s hoping the problem will stay confined to the one eye.
When the 5 Browns’ concert tour concludes in Salt Lake City this month, she plans to relax a little. Maybe she’ll do some hiking or hang gliding in the spring.
“I’ve heard you can do tandem hang gliding,” she laughed, “And when I’m hiking, I’ll hang onto my husband since my depth perception is off.”
She’s holding onto her faith, the love of her husband and her family and facing the uncertain future with grit.
“Right now, I’m just trying to enjoy life,” she said, wiping away a tear.
The 5 Browns, all Mormons and siblings, took the classical music world by storm when they all graduated from Juilliard School of Music in New York City and launched a career that has their CDs consistently topping the Billboard charts.
If you go:
What: The 5 Browns in concert
Where: University of Utah Kingsbury Hall
When: Saturday, 7:30 p.m.