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Sarah Elizabeth Fisher Photography

Joanna’s joy

Music | Severe joint disease doesn't stop young musician from making beautiful music

Issue: "Tidings of discomfort and joy," Dec. 28, 2013

Use “most inspirational music stories of 2013” as an internet search phrase, and you’ll score a few worthwhile hits. But none of the stories will surpass the one behind Four Fingers, Two Hands, One Piano, the self-released piano album of four Muzio Clementi sonatinas and the first movement of a Joseph Haydn sonata by Joanna Joy Costa.

Born 15 years ago with Arthrogryposis Multiplex Congenita (AMC), a rare disease that significantly, and sometimes drastically, hinders joint flexibility, Joanna relies on leg braces to walk and the WREX exoskeleton-robotic device pioneered by the A.I. duPont Hospital for Children in Wilmington, Del., to lift her arms above her head and feed herself.

“She was their ‘guinea pig,’” says Joanna’s mother, Nancy, of Joanna’s right-time, right-place role in the hospital’s development of what has come to be a life-changing technology. And, lest anyone need evidence, a YouTube video titled “Nemours WREX Robotic Device Helps Children Reach Higher” features Joanna at age 5 in full demonstration mode (see below).

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But it’s the homeschooled, New Jersey teen’s limited use of her fingers that makes Four Fingers, Two Hands, One Piano nearly miraculous. With only the forefinger and thumb of each hand, Joanna slows down and simplifies the Clementi and Haydn pieces until they sparkle with a pedal-free precision and clarity not unlike that which emerges from a music box.

“I can do the pedal,” she says, “but I like those pieces without it.”

Music lovers will too. Joanna simplifies without oversimplifying. And her decreased tempi make appreciating the melodies easy—so easy, in fact, that some listeners may notice for the first time that it’s Clementi’s “Sonatina No. 5 in G Major, Op. 36” upon which the songwriters Toni Wine and Carole Bayer Sager based the melody for the Mindbenders’ 1965 hit “A Groovy Kind of Love.”

Joanna’s recorded performances may not remain simple for long. She’s currently experimenting with the hammer dulcimer (“We talked about [using] it for this album,” says Joanna’s father, Roy, “but we figured, ‘Let’s keep it simple this time’”). And both her 17-year-old brother, Stephen, and her 12-year-old brother, Nathanael (who also suffers from AMC), play the guitar.

“When I first met Joanna eight years ago at an initial music-therapy assessment,” says her music therapist and piano teacher Janet Robertson, “I could not have predicted the path our journey would take. I have been surprised, challenged, and amazed.”

Anyone who watches the other YouTube video in which Joanna stars will be too. Simply titled “Limitations” (see below), it captures her unique technique and proves that there’s no sleight of hand involved in her album.

Or not much. Due to the demands of her homeschooling, her physical- and occupational-therapy regimen, and her susceptibility to fatigue, Joanna and her family eventually discovered the technology-age possibilities of splicing together various takes into a coherent whole—possibilities that no doubt came in especially handy during the 12-minute Haydn selection.

“A lot of times,” she recalls, “I’d play the whole piece and make a mistake. It was frustrating to have to go back and do it all again.”

The entire process took three years.

The secret to her perseverance? Her faith in God.

“A lot of times, especially when I was starting high school,” Joanna recalls, “I was pretty depressed because I didn’t look like everybody else, and I wanted to. But, from reading the Bible, I knew that God had made me the way I am, and he doesn’t make mistakes.

“And even though I look different, he has a purpose for me.”


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