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Ronnie Polaneczky: Bittersweet symphony: Before deafness, she's going to hear her favorite sounds

IN THE HOLLYWOOD movie "The Bucket List," two terminally ill men set out to fulfill a wish list of all the things they want to do before they "kick the bucket."

Kristin D'Antonio, 20, plays the marimba in her East Norriton apartment. D'Antonio is slowly going deaf from a neurological disease. (KRISTON J. BETHEL / Staff photographer)
Kristin D'Antonio, 20, plays the marimba in her East Norriton apartment. D'Antonio is slowly going deaf from a neurological disease. (KRISTON J. BETHEL / Staff photographer)Read more

IN THE HOLLYWOOD movie "The Bucket List," two terminally ill men set out to fulfill a wish list of all the things they want to do before they "kick the bucket."

In East Norriton, 20-year-old Kristen D'Antonio is in a race against a different impending demise: She has a genetic disorder that will make her deaf.

Before the silence descends, she's determined to hear - live - every musician and rock band she has ever loved.

Her "deaf bucket list," as she calls it, is fabulously eclectic.

She's already heard the grand rock of Pearl Jam and - twice - the Who. The girl power of Ani DiFranco. The raw bliss of Savage Garden. The stadium rock of Styx. The joyful bounce of Barenaked Ladies. The sublime poetry of Carole King and James Taylor.

She yearns to hear the howls of Aerosmith, Kiss, U2 and Tom Petty. Arlo Guthrie's tenor, Beyonce's soprano, Eric Clapton's guitar and Anoushka Shankar's sitar. Justin Bieber's teen bop and Julia Nunes' folk pop.

She's not into musicals, but she'd make an exception for the aural thrills of "Avenue Q" and "Hair."

And while she's at it, if she could afford it, she'd hit the comedy clubs every night, to revel in exquisitely delivered punch lines and the happy noise of the communal laughter that follows.

"I'll be honest, the thought of going deaf scares the living daylights out of me," says Kristen. "I'd rather lose my eyesight than my hearing. When you hear things, it creates images in your mind - you can still 'see.'

"But when I lose my hearing, I won't be able to hear my mom say my name anymore. I won't hear my nephew and nieces tell me they love me."

And she won't hear music, except in memory.

So, with the help of her mom - "She's trying to make all my sound dreams come true," says Kristen - she is on a mission to hear as much of it as she can, while she can.

It's a cruelly ironic fate for Kristen - a musician and speech-communications major who is crazy for sound.

"I had ringing in my ears almost my whole life," says Kristen, a bubbly, dark-eyed, curly-haired sophomore at Montgomery County Community College and part-time cashier at Whole Foods in Plymouth Meeting. "I didn't know it was abnormal until I got my diagnosis."

Kristen is sitting in the East Norriton apartment she shares with her mom, Karen D'Antonio, and their two cats. Her dad died of esophageal cancer when she was 14. Her two married sisters live nearby with their families.

Against the wall stands a wheeled marimba - the xylophone-like instrument, played with mallets - that Kristen has played since she was in the band at Perkiomen Valley High School ("I'm a percussionist," she says. "I'll play anything you can hit.").

She was also in the chorus and once dreamed of being a singer, performing self-written works in the style of her favorite singer-songwriter, Carole King.

Her dreams changed June 26, 2007, when she had an MRI to determine the cause of the frightening "brownouts" she was experiencing - episodes during which she'd hear a kind of white noise and see the sort of flickering "snow" we usually associate with a distorted TV signal.

The cause of these seizures: Neurofibromatosis Type 2, a rare genetic disorder of the central nervous system that creates tumors on the body's acoustic nerves (the nerves that send sound impulses from the inner ears to the brain). NF-2 can also create tumors on other nerves throughout the body. The growths are rarely malignant, but their effect is profound.

In Kristen's case, the tumors that encase her acoustic nerves are essentially inoperable, and she will most likely lose her hearing by the time she is 30.

"It could go slowly, or she could wake up tomorrow, and it will be gone," says her mom, Karen, 51, an executive assistant. "There's just no way to predict."

In addition, a tumor has paralyzed Kristen's left vocal cord, and a bigger, rapidly growing tumor threatens the right one, too. A recent biopsy was inconclusive as to whether the tumor was cancerous, so Kristen will begin chemotherapy this month to cut off the blood supply that feeds it.

If she loses the use of the right vocal cord, she will lose her ability to speak and, obviously, sing.

"She'd then need a permanent tracheotomy, because her paralyzed vocal cords would affect her breathing," says Karen.

She also has a tumor on her brain, which causes seizures; more than 50 on her spine, which cause chronic pain; and one on her ring finger, which affects her marimba playing. But the most critical, for now, are those that threaten her hearing and voice.

These are the ones that most worry Kristen.

"I am obsessed with speech and how we communicate," she says, noting that she quickly learned the international phonetic alphabet in preparation for language study in college. "The way that tone of voice and figures of speech affect what is being said, how that changes from culture to culture, and even within a culture. How dialects form. I just think it's so cool!"

What has inspired those who know her, including her doctors at the Children's Hospital of Philadelphia, where she began treatment and still receives care, is how gracefully Kristen has adapted to the realities of her illness.

"Kristen has an incredible understanding of her illness and what she is facing," says pediatric neuro-oncologist Dr. Jean Belasco, who treats patients at the hospital's neurofibromatosis center. "Yet, she has an ability to adapt to the obstacles and normalize her life. She's eager to get through chemo so she can get back to school in September. She stays 'in the moment.'

"And she's so funny!" says Belasco, thinking, no doubt, of how Kristen has given human names to all of her tumors - Fred, Larry, Moe, Harry, Minerva, Lionel - to lighten the gravity associated with their proper medical names, like "left temporal lobe meningioma."

"She's someone who sees sunshine when it's raining. She's just an amazing young woman."

Kristen credits a few things for her determination to use her illness as a reminder that every day has gifts to be seized.

Shortly after her diagnosis, her friend Chaz was killed in a bike accident. His death taught her that "if a healthy person can die that quickly, and I'm still alive but I have a tumor, well, at least I am still here. I decided I was going to live my life the best I could, every day, for Chaz."

And the years since her dad's death taught her that it's possible for happiness to follow a devastating loss. Since he passed, her sisters have had kids - the joy of her life.

"All I have is the day I'm given," she says. "However NF-2 affects me, well, I'll just adapt."

So when Kristen envisions her future, this is what she now sees:

"I'll be in communications, in one form or another," she says. "If I can't hear, I can still speak. And if I can't speak, I can still write. Some way, gosh darn it, my voice will be heard."

She wants to get involved in deaf advocacy, to find ways to bridge the gap between the hearing world and the deaf world.

And she is already contemplating ways to stay involved in music. She has become fascinated by Evelyn Glennie, a famous Scottish percussionist who is deaf yet still performs magnificently, using her entire body to sense the vibrations of music.

"That makes me so hopeful," says Kristen. "I can still be a percussionist. I'll just have to adapt the way I 'hear' the music."

Her resilience awes her mom.

"When I get down about Kristen's disease, she brings me up," says Karen. "I've told her, 'God never gives you more than you can handle.' Well, God has given her a lot to handle. The thing is, I think she can handle it.

"And I think that whatever happens to her, the way she handles it is going to help someone else going forward. She will be the vessel so that someone else will be free to sail."

Until then, she and her mom continue to pool their pennies for concert tickets because there is so much more to hear. So many standing ovations to give after a ballad by a singer with pipes to die for, or after a sidesplitting show by a comic who really brings the laughs.

So many chances, truly, for Kristen to scream for more. Her deaf bucket runneth over.

E-mail or call 215-854-2217. For recent columns: Read Ronnie's blog at