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updated: 6/3/2013 6:36 AM

Young woman struggles to adapt to bionic limb

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  • Tisa Berset checks out her new hand at Westcoast Brace & Limb in Temple Terrace, Fla.

      Tisa Berset checks out her new hand at Westcoast Brace & Limb in Temple Terrace, Fla.
    SHNS photo

 
By Danielle Paquette
Tampa Bay Times

Tisa Berset stares at her new hand, willing it to open. "Concentrate," the doctor says, watching over her shoulder. "Like we practiced."

A year ago, all of Berset's fingers were amputated at the knuckles. What remains of her right hand is now strapped inside a silicone glove. It's a prosthetic device billed as the best on the planet, with bionic fingers dexterous enough to pluck a feather or tickle a baby. To open or close or pinch or point, Berset must wiggle the tiny muscles between her middle and ring knuckles as though she's spreading phantom fingers into a "V" shape. She groans. "It's harder than you think."

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Berset, 22, is a self-described country girl who guzzles Coors Light through a straw. She was born near Boston, raised in Tarpon Springs and never stopped cheering for the Red Sox. She has long, purple-black hair and wide green eyes, which she often lines with glitter. She believes tattoos can protect and heal. She has 10, including "Daddy's Little Girl" and an infinity symbol -- to signify her potential.

At Westcoast Brace & Limb in Temple Terrace, Fla., orthotist Greg Bauer and a team of specialists have spent six months molding the battery-powered hand to perfectly fit Berset. They've adjusted the finger length, tightened the Velcro, concocted a special spray tan and listened to her hopes and fears: I want to go out and feel normal.

During this January appointment, Berset practices with the final version, the one she'll take home.

She holds it close to her face. Focuses on contracting the tiny muscles. Notices her wrist veins bulging.

Joint by electric joint, the bionic fingers uncurl.

Berset grins at Bauer.

She can move this tool. But she needs to make it her own, make it express who she is.

"Now," she says, "how do I flick someone off?"

Four years ago, during her freshman year at Valencia College in Orlando, Fla., Berset started vomiting.

The nausea, accompanied by cold sweats and back pain, struck in the shower, during psychology class, behind the wheel of her silver Ford Focus. She told friends that it must be the flu, a bad reaction to dormitory food, a vicious hangover. Inside she knew: Something's wrong with me.

After Berset visited three doctors, an oncologist in Port Richey, Fla., diagnosed adult-onset Still's disease, a rare type of arthritis whose cause is unknown.

She left school to readjust at home. On top of her daily steroid shots to suppress the waves of sickness, another oncologist prescribed chemotherapy. In past patients, he told her, it sent the disease into remission. But Berset's body rejected it.

One night, she felt unusually queasy and texted a friend: "If I don't wake up, come in and make sure everything's okay."

She woke shivering, itching, in Safety Harbor, Fla.'s Mease Countryside Hospital. She faded out and woke again in a Bayflite helicopter to Tampa General Hospital, where nurses wrapped her in blankets and put an oxygen mask on her face. Her heart, they told her, wasn't pumping blood to her extremities. She developed sepsis. Her hands and feet turned blue.

Berset stayed in the hospital for weeks.

She often woke crying and hugging her pillow pet, Wally, the Red Sox mascot. She snapped at her parents, Bruce and Diane Berset, and then sobbed in their arms.

Why me? she thought. She was just ditching her high-school curfew, sensing the possibilities of the world -- and now the future was on hold.

Sometimes at night, she'd stare at her blue fingers and toes and struggle to imagine life without them. Who would she be without her pink nail polish?

Berset knew what was coming before the doctor told her.

"Just get rid of them," she said. "But save my tattoos."

The first documented person to wear a prosthetic hand was Marcus Sergius, a decorated Roman general during the Second Punic War who lost his right hand in a sword fight. Sergius fashioned new fingers from iron, clutched his shield and charged back into battle.

Over time, wood-carved digits gave way to metal hands with moving joints, which, after years of scientific advancements, gave way to intelligent hands, computer-programmed and custom-fit to users.

The iLimb Digits, made by a Scottish smart-prosthetic company called Touch Bionics, was released shortly after Berset's amputations. The first to use it was a Tampa Marine Corps veteran, said Bauer, the orthotist. The second was Berset. She was energetic, determined and still had partial hands -- the ideal candidate.

The iLimb Digits is special, said Bauer, for its lifelike joints. It grips like human digits, slowly or briskly, adjusting pressure to clasp an iPhone, peck a keyboard or lug a 50-pound suitcase.

Marcus Sergius was a warrior. Without the iron hand to hold his shield, he couldn't really be himself.

Could Berset say the same?

••••

The 3-year-old boy chewing Chex Mix points at Berset's scarred knuckles.

"What's that?" Kamari asks, frowning.

"What's what?" she replies.

"That!"

At Our Savior Lutheran Church in Clearwater, where Berset works part time, she usually watches the toddlers in the classroom next door. On this February morning, the 3-year-olds wiggling in yellow plastic chairs haven't met her, so she left the bionic hand at home. She worried the device might scare them.

"I don't have fingers, Bud. I don't have toes, either."

She kicks off her black, rhinestone-studded loafers.

"See?"

"That's gross," Kamari says.

"Well, it's normal for me."

Berset knew that life would change after her amputations. She mastered the physical challenges, but hadn't prepared for the social shift -- the need to attach an explanation to every introduction.

Berset calls to a blond boy across the room. An hour earlier, he'd asked the same question.

"Gavin! Tell him what happened to my fingers and toes."

"The doctor took them," he says.

"That's right," Berset says. "Give me a high-five!"

She reaches across the table and touches his hand.

She turns back to Kamari.

"Now you, Bud. High five?"

He slowly touches her palm.

•••

Insurance covers 80 percent of the iLimb Digits, which costs around $80,000. That's on top of Berset's new silicone slip-on feet, worth $20,000 each.

After a fundraiser rummage sale at the day care, she still owes around $24,000. But there's a payment plan. And her parents set up a Facebook page where friends and strangers post encouragement and donate money.

Her dad wonders if the financial burden of the bionic hand is worth it. A left-hand device won't be considered until that's clear. If the bionic hand's too hard or awkward to use, will it collect dust on her nightstand? "She's good without it. She's so independent," he said once in the doctor's office. "She does it all on her own."

Berset's progress depends on her determination, Bauer, the orthotist, tells them. And she has already come so far.

After four months of occupational therapy at Tampa General, he estimates, it could become just another body part. Something she wouldn't have to think about.

Berset knows what she could do with a functioning hand. She'd more swiftly apply her Maybelline Stiletto Lash mascara, brush the horses on her sister's farm, bounce the toddlers she baby-sits, give herself the daily shot to suppress the Still's disease, which she still fights. She could type on a keyboard. Reclaim abilities she lost.

Truth is, she gets around just fine without it.

She traded a laptop for an iPad, which she navigates with the touch of her knuckles. She strokes her gray-and-white cat Roo with her palms. She drives her Ford Focus and applies mascara with "her little V," the small gap between the nub of her thumb and the inside of her index finger. She found a way to balance without toes and stroll through the mall casually, like anyone else. She moved out of her parents' house and into a friend's duplex. She regularly attends counseling.

The iLimb Digits doesn't complete Berset. She admits it. She can't see how it will ever feel natural or comfortable.

"I learned how to do everything again without my fingers and, honestly, I've gotten good at it," Berset said. "But don't get me wrong. I'm grateful for the hand. Right now, I just can't say how much I'll use it."

Recently, she tattooed a giant, rainbow-colored dream catcher across her thigh to block out negative energy.

This summer, Berset plans to take 15 credit hours at St. Petersburg College in Tarpon Springs. She'll jot class notes on her iPad. She'll work toward her dream career: a psychologist who helps teenagers work through loss.

•••

Winghouse has dollar drafts.

Berset laughs at the text from her best friend, Nick.

"I bet he drinks three before I even get there."

On this January evening, the plan is familiar: leave work, stop home in Tarpon Springs, ask Mom for money, drive to the Palm Harbor restaurant where waitresses in black spandex serve her Coors Light with a straw.

It's Berset's place. Her comfort zone.

She pulls on her favorite Boston Red Sox sweatshirt and writes back with a knuckle.

"On my way."

Tonight, for the first time, she's wearing the finished hand outside her parents' house and the doctor's office.

Berset slides it on. Her gray sleeve partially hides the bionic fingers.

She's a little nervous to show Nick. What will he think? Will people stare?

She walks in, eyes straight ahead, past the sports fans and flat-screen TVs and cheese fries, to her table by the window.

Nick looks up from an empty pint glass.

"Wow," he says, smiling. "It's bigger than I expected."

They laugh, order boneless Buffalo wings, talk about the Gasparilla pirate-themed festival, a wild night at a Rascal Flatts concert, the Strawberry Festival. They order more beer.

"That server was totally just checking out my hand," Berset says, grinning. "Watch this."

She sets her elbow on the table.

The veins in her wrist bulge.

She stares at her hand.

The index finger goes down.

The ring finger.

The pinkie.

"Pretty cool," he says. "Besides the fact you're flipping me off."

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