An Excerpt From “Secrets of Bari”

Chapter One

Hudson, New York

Present Day

The leg was merely a contraption; that was how she had learned to think of it. A tool, a means to an end. It carried no emotional significance in itself, no significance at all beyond its purpose—to facilitate her movement from one place to another. No more meaning than a skateboard or a motorcycle or a car. This she had accepted long ago; she no longer thought about it, no longer lost sleep over what she could and couldn’t do, no longer worried about what people might think. Strapping on the prosthesis had become rote, just one step in the algorithm of her morning routine, not that different from everyone else’s: make bed, brush teeth, shower, get dressed, strap on leg.  But she didn’t take it so much for granted that she was unaware of its effect, of a certain admiration, let’s say, that it inspired.

The hand was a different thing entirely. The hand was too handicapping, too freighted with connotations, too much in her vision. Now she pulled off her jeans, being careful to fold them down from the top, “like a sock,” as her occupational therapist had shown her so many years ago, and slipped on a black pencil skirt and sleeveless silk blouse. It wouldn’t hurt, in her department’s presentation tonight, to display the fact that she had first-hand knowledge of prosthetic use. The hand was obvious, and now the short skirt showed off both legs—real and artificial—to advantage. In fact, from a reasonable distance, the prosthetic leg, sheathed in a flesh-colored skin, was indistinguishable from the natural one.

She surveyed herself in the full-length mirror: the classic outfit provided a nice contrast to her unruly red curls and multiple tats. Satisfied, she switched back to jeans and placed the skirt in her bag. Her department was seeking a grant from the Defense Advanced Research Projects Agency for the development and testing of a thought-controlled prosthetic hand. She had developed a ground-breaking procedure that used tiny injectable myoelectric sensors, or IMES, to detect muscle activity and wirelessly transmit commands to the prosthesis and responses back to the brain. The cutting-edge marriage of biology and engineering. Bionics.

She checked her Ball engineer’s watch, a gift from her grandfather on the occasion of her doctorate—plenty of time—then set her computer to print the latest changes to her research calculations and went outside on the porch. The sun was unseasonably warm, and she could smell apple blossoms. Grandpa’s old Victorian had the requisite wrap-around porch, and the view to the west was stunning, the broad ripening valley carved over millennia by the Hudson River, and the blue silhouettes of the Catskills beyond. Late afternoon shadows crossed the brilliant sun-soaked landscape, creating the coveted light of the Hudson Valley School of painting. It was easy to see why her grandfather loved working here. She stared silently, listening to her heartbeat. She could appreciate the beauty—she was the granddaughter of an artist, after all—but to her this spot meant something more, safety maybe, or more precisely, a refuge—a place where defenses weren’t required, or could, at least, be put on hold.

Grandpa was painting at his easel at the edge of a wooded area about 50 yards away, the grasses blowing around his wheelchair. As she approached on a wide path smoothed by years of use, he absently pulled his sweater around his shoulders against a phantom chill, but remained absorbed in his work, barely looking up. She leaned in to see the picture while he pointed out elements of the work. There was little about the composition that resembled the scene before them, but looking closely, one would see the elegance of the new leaves on the trees reproduced on two bedroom lamps in the painting, and the unfurling ferns at their feet rising from a Queen-size headboard.

She packed up his canvas and art supplies, and he stoically accepted the indignity of her wheeling him back to the house. Too often recently, it occurred to her that they were engaged in an ironic reversal of their roles since her childhood. Later, she settled him in his bed, perched against the pillows, a tray with food and drink and the TV remote beside him.

“Here’s the other remote,” she told him, setting the device beside him on the bedcovers. Her voice came out raspy and strained, and he put his hand over hers.

“You saw the neurologist this morning,” he prompted.

“Yes.” She sat down on the edge of the bed and smiled brightly. She had gone to the specialist for a second opinion when her voice did not clear up after a bout of laryngitis. “He confirms what the ENT told me.”  Her voice broke and she took a deep breath and swallowed.

“But it’s not serious, not—?” He leaned in to hear her, and she attempted to push her words to be louder. Instead, they cracked and caught in her throat.

“No, Grandpa, it’s not life-threatening.” She smiled while she reassured him, but, even though she accepted the doctor’s evaluation, she was skeptical of his optimism. At first, her students and colleagues had accepted her “laryngitis,” and even teased her about her throaty voice, but when it didn’t return to normal, she felt their attitude shift. Students shuffled discontentedly in class when they couldn’t understand her, and her associates cast their eyes down, uncomfortable in her presence. It unnerved her. The forthright confidence in her own abilities that had, for years, kept pity and condescension at bay, seemed to dissolve each time she opened her mouth and a tremulous, uncontrollable sound emerged. She shrugged. Maybe it would clear up. “He said it could be delayed trauma from the accident or simply something that would have happened anyway.”

“Oh, my dear, you’ve been through…” The elderly man stopped and shook his head.

“I’ve been through worse.” She laughed, and placed the second remote in his hand. “Here, this is for the Countess.”

“She gives me the creeps, Amelia.”

Amy shook her head in frustration, but couldn’t help smiling. Countess Ada Lovelace, named after the 19th century mathematician and called the Countess for short, was a little creepy-looking.

“I know,” she croaked, “but she’ll get you a glass of water or call if you need me.”

She picked up the remote and pressed a few buttons. Presently, a vaguely humanistic robot whirred into the room on wheels. She stood about four and a half feet tall with an LED screen in place of a face and gangly articulated arms extending from her body. Amelia had built her as part of her doctoral thesis, and she could perform several domestic functions as well as all the ordinary computer ones. She had been a reliable presence when Amelia needed her, and the living woman was quite fond of the robot one. She suspected a psychologist would have a field day with that. But a psychologist wouldn’t understand the complexity of the design, the merging of disciplines that was required to create the Countess, how much her successful completion launched Amy’s meteoric rise as an expert in robotics and a pioneer in bionics.

“I know the…thing is amazing—artificial intelligence and all,” Grandpa said, “but just leave the phone.”

“Intelligence is the ability to adapt to change,” the Countess said. “Stephen Hawking.”

Amy had programmed her to express inspirational quotes at the sound of key words. Grandpa rolled his eyes, and she sent Ada Lovelace to her room, then handed Grandpa the phone.

“Don’t worry so much,” he said.

“Promise you’ll call me if you need me.”

“Go,” he shooed her out with his standard admonition. “And break a leg.”

“Too late,” she gave the expected reply.

“Amelia, I’m very proud of you,” he added.

She turned away, embarrassed that his words caused her to choke up. She would have to wipe under her eyes with a tissue to make sure her mascara—a rare indulgence that bespoke the importance of tonight’s presentation—didn’t run. She kissed him, and made her way through the breezeway to the out building that contained Grandpa’s studio, a large open space with windows lining one wall, his supplies arranged neatly on shelves and work tables, canvasses large and small propped on easels and against the walls.  A door at one end accessed the garage and she hit the garage door opener and walked her motorcycle outside, a candy orange, Ninja 650R, modified for her needs.

His words stayed with her as she mounted her bike and sped toward the university. What had she done to deserve her grandfather’s praise? Was it the advancements she’d made in her field?  Or was it the mere fact of her survival? Yes, she’d survived—or parts of her had, anyway—though parts were lost and quite literally buried forever.

The road rose up before her, and she resisted the urge to jack up the speed and fly off the shoulder into oblivion. Instead she screamed into the wind as some therapist had suggested when she tried to shock him with her death wish. She was gratified to find she could still scream; she hypothesized that the scream function was controlled by a different part of the brain than her speaking voice, and therefore unaffected by her vocal condition. She screamed louder, relishing the full-bodied sound, the lack of strain or tremor. If she were being totally honest, she didn’t really want to crash. She had too much to look forward to: exciting breakthroughs in her research, a prospective lover. And the pain, well, the pain was at least under control. She had a treasure chest of options (as her pain doctor called it) for dealing with phantom leg pain, as well as the myriad other pains that lingered or flared up unexpectedly long after the accident and seven surgeries. Exercises, biofeedback, a strange mirror therapy that fools the brain into thinking the missing leg is still there—and oxycontin, thank God for oxycontin—they were all there if she needed them. So what if her voice had a tremor. She was young, smart and successful. Some men thought she was hot. Life was good. The realization made her laugh out loud, and she leaned expertly into a curve, the powerful machine beneath her obedient to the physics of her weight and touch. As her students would say, it was time to just get over herself.

There was a spell in college when she would go to sleazy bars—not the college bars, but the ones that served repellant drunks and aging whores—and drink herself brainless. The other misfits invariably felt sorry for her and bought her drinks until the place closed or she was thrown out. Then she’d stumble to her car and race back to her dorm, half-blind, seeking oblivion in the rush of speed—challenging fate to send her to the death she’d escaped years before—or so some therapist said. Really? It took a PhD for her to come up with that? This went on until her roommate, stupid in every other shiny blonde, suntanned southern belle way, shocked her with her insightful wisdom.  “You fucking shit,” she said, “no one cares if you kill yourself, but damn you to Hell if you hurt some innocent kid while you do it.” Truth is truth, no matter the source. Drunk driving had been replaced by the scream, and maybe it was time to blow that off, too.

She steered her bike into a gated entrance. Originally designed as a single Gothic style building in the early 1900’s, Hudson Institute of Technology had expanded over the decades to cover 300 acres with ever more modern structures, including a state-of-the art library with access to more than 5,000,000 titles and a world-renowned interdisciplinary bionics research lab. However, the first thing everyone noticed about the university—and you couldn’t help seeing it—was the huge sign proclaiming its name in two rows built into the side of a hill overlooking the Hudson River to the west, and lit by a series of spotlights. Commonly referred to as the Hollywood Sign, it was the subject of much controversy, and every few years someone in town led a campaign to have it removed. So far, the zealots had not won. Each letter stood 18 feet high and was the scene of many petty crimes and questionable acts, the detritus of which could be seen scattered around its base, beer empties, used condoms, marijuana roaches and the occasional incongruous item. For a time, one enterprising undergrad had collected and displayed in his dorm room an impressive exhibit of such objects— one beaded designer high-heeled shoe, a ripped U2 T-shirt, a Band-Aid tin filled with stale gummy bears, a full jar of African Essence hair gel, two empty Starbucks cups, grande size, a full-length plaster leg cast, and eight water-stained pages of a term paper on compression algorithms, graded B-minus.

One year, two students painted out most of the letters so that the sign read “Huds tit.” The offenders’ online bragging led to their apprehension and subsequent suspension, during which they repainted the sign. The sign was also the site of at least one injury each year, the inevitable result of an attempt to scale one of the letters. The capital T was particularly popular. Amy had her own history with the sign. Following a snow storm in her sophomore year, she attempted to descend the hill by skiing through the legs of the “H” and between the “of” and the “T” of “Technology” to try out a pair of skis she had designed and built herself to accommodate her prosthetic leg. All went well until she hit the icy, slick bottom that sloped right onto Route 9J. She flew onto the highway, causing a car to swerve into a ditch to avoid hitting her. No one was hurt, but the next spring, the college planted a row of evergreen trees along that stretch of the road, to which was immediately and permanently attached the moniker Pegleg’s Forest, and, naturally, the hill became Pegleg Hill.

The trees, the sign, the hill, the grassy ridge at the top that filled with wild flowers in the spring—Amy felt a rush of wellbeing every time she entered the campus and passed the familiar landmarks. HIT was the place where she had found purpose, one of the few places where she was completely comfortable in her skin, and where, as with her Grandfather’s Victorian, she felt that she belonged. Now she rode past the glowing sign and along the winding drive to the parking lot adjacent to the Paul Charles Bruckman Science and Technology building. The S & T, where she held classes and conducted her bionics research, was located on the east side of Pegleg Hill. Amy liked to take her classes up to the ridge to sit on the grass and contemplate the view of the flowing river while envisioning potential solutions to complex problems. Once in a while, a student would ask her about the legend of Pegleg Hill, a tale which had grown exponentially taller over the past decade. She neither confirmed nor denied even the most fantastic of their accounts.

The S & T was a 70’s era, four story glass and concrete box with classrooms and labs along the exterior walls and a hallway that ran the length of all four sides. On the interior side of the hallway were faculty offices, two small auditoriums and one large for lectures and visiting speakers.  The second floor was devoted to her department. The research labs, where discrete phases of prosthetic research, including myoelectic signaling, direct neural interface, and thermoplastics and materials development, lined two hallways. The plan was to make a presentation to the DARPA team in one of the small auditoriums, then escort them on a tour of the labs where they could see elements of the project in progress. What Amy was about to do, talk about her work—teach in effect—was second nature to her, and she looked forward with pride to explaining the intricacies of the new bionics and the arm they were developing. She wasn’t as sure about showing off her own disability and, as she walked to her office, she considered not changing into her skirt. It seemed unprofessional to invite sympathy, maybe even distasteful. Look at the cripple; isn’t she sweet, pitiful, courageous? Forget that she’s a doctor and an engineer. First and foremost, she would always be a gimp, a freak, an aberration. It’s why she hated telethons: crips on parade. When she was little, she imagined a world where everyone was blind, just for first impressions. Once they knew her, their sight would be miraculously restored. For the first time, she wondered if even that would work; would her voice now betray her as someone different, something less?

On the other hand, there are times, and this was one, when only a visual would do. She decided to wear the revealing skirt. It was who she was, and if it helped, it was on them, not her. HIT would need every advantage to win their grant. DARPA was pouring millions of dollars into competing projects at over 30 universities and research centers. All were designed to revolutionize prosthetics in the hope that new advances would let amputees do what most people take for granted: make gestures, turn a key, even peel the shell off a hard-boiled egg. HIT’s contribution would be a tiny implant into the brain that would allow an amputee to not only interpret signals from residual nerves and muscle to drive movements in an artificial limb, but would actually allow them to feel heat and cold.

She called the prosthesis the Philo Hand, after Philo of Byzantium, a second century BC engineer who studied the effects of heat, and she was excited about unveiling it. She knew how important it was to have the ability to feel those sensations. This was her special branch of research, and she could speak from experience. From avoiding severe burns to warming a baby’s bottle, most people react to heat and cold all day long. It would be a significant coup for both the university and her career if they succeeded in helping amputees to feel. She would speak about the limitations of prosthetics currently in use, and the importance of continuing to make advances. She would refer to the double-edged sword of positive press about amputees who could lead normal lives with artificial limbs. On the one hand, coverage of the latest improvements helped to keep their research in the public mind; on the other hand, it gave the false impression that amputations were no big deal, when, in fact, they were a huge deal, and even the most sophisticated prostheses were still difficult to use, and irritating or even painful to wear.

The department head, Dr. James Worthington, was waiting outside her office. In his mid-fifties, he was lanky at more than six feet with sandy hair that wouldn’t lie flat.  Amy possessed a perpetual urge to reach over and smooth it down. He was smart and geeky, if full of himself, and his visions for the future of bionics were inspired. “Amy, I’m glad you’re here early; I want to talk to you before the presentation.”

“Sure, what’s up?” The words came out gravelly and low, cracking with her efforts to push out each syllable: “Sh-uuu-r… wha-ut-s…u-up?” Not a stammer; more like the strained speaking of someone with laryngitis, struggling to make sounds.  She unlocked the door to her office and gestured for him to go in. The room was small, but the huge print on the wall seemed to open it up. It showed a wooded landscape with a pair of deer, ears alert, in a clearing by a wide river. It was a fairly standard Hudson River scenic, except the glow of light that reflected off the water and illuminated the clearing came, not from the sun setting over the distant mountains, but from a series of eight parlor lamps perched on rocks and tree branches around the scene, their cords disappearing into the undergrowth. It was signed by her grandfather.

The department head settled into the chair beneath the artwork, while she put down her presentation materials. “How are you feeling?” he asked.

“Fine, why?”

“You’re not nervous?”

“No more than usual.”

“I just wondered…because of your voice. You don’t sound like yourself. You sound stressed.”

Stressed? No, she was frustrated, partly because  she knew the words she wanted to say would not come out right, that she would crack and croak her way through them, and partly because she had gone through all this with him a week ago. She took a breath and looked straight at him.

“Worth, I am not stressed.” (W-uh-rr-th, I a-am no-ot stress-d). “I told you. Two doctors confirmed it. I have a condition called spasmodic dysphonia.”

“I know Amy, and you know I am your greatest supporter, but you sound stressed. It seems there should be something you can take, tranquilizers or an antidepressant to…to get you through stressful talks like this one. Throat lozenges?” Amy sat down behind her desk and typed into her laptop, speaking calmly while she typed.

“Dammit, Worth. Stop saying stressed. The only thing stressing me is your refusal to pay attention when I try to explain this condition. I know what I sound like. I know I sound like I’m nervous or crying. But, I am not. I can’t control the way my voice comes out.” She turned the computer around and pushed it toward him.

“Look, here is the website. I’ve been to specialists; I’ve gone to voice therapy for weeks. Lozenges are not going to help.” She sat back and caught her breath while he scanned the webpage. He leaned in close to her, as if she were deaf, and it was her hearing that was compromised and not her voice. “It says there is no cure,” he said.

“That’s right; not curable. I already told you that.” As she pushed the air through her vocal cords to form the words, it hit her. Not curable. Until that moment, she had not really believed it, not really thought about what it meant. It was just her voice after all—but, she could still speak. It was difficult, and it sounded strange, and she had no control over it. It might squeak, or break or stop working altogether, anytime. Not curable. But she still had things to say. She could still say them, couldn’t she? Then the realization hit her all over again. Not curable. What did it mean? She had a voice, but it would never be normal again. She would never speak softly into a lover’s ear; never sing to her children, if she ever had them.

Worth stood and paced her small office, stopping before the painting. “What about surgery?” He was not a man to be easily defeated by the facts, she thought unkindly. “Can’t they operate on your vocal cords? Didn’t that singer Adele just have successful vocal cord surgery?”

Did he really think she hadn’t asked about surgery? She folded her hands tightly in her lap. “My vocal cords are actually fine, Worth. It’s not about my vocal cords; it’s about my brain. I don’t have what Adele had. It’s not psychological, and it’s not physiological. It’s neurological.” She pointed to a definition on the website and ran her fingers under the words, so she wouldn’t have to try to say them aloud: Spasmodic dysphonia…is a neurological voice disorder that involves “spasms” of the vocal cords causing interruptions of speech and affecting the voice quality.

“In other words, the signals from my brain are fucked up.”

“I’m sorry, Amy. I don’t know what to say.”

“I have an appointment to get Botox injections; it may help.”


“Yeah, they inject it through your neck, into the vocal cords, and hope it will keep the muscles in there from going into spasm.” She made exaggerated gestures suggesting the injection of a huge needle into her throat.

“Ugh, don’t show me that. Does it work?”

“Sometimes. For a couple of months anyway. Sometimes you lose your voice entirely.”

“Sounds like a pretty iffy solution.”

“So-oo,” she said, “if you have any other suggestions, I’m all ears.”

“Amy, I hope I didn’t offend you. It’s just frustrating…well, I know it must be frustrating for you, too. Hey, you can’t expect me to know about every medical condition there is. I’m just a guy and a nerd at that.” He smiled and her anger softened. She rested her chin on her hands and sighed.

“I know Worth, but you’re a scientist. I trust you to get the facts before coming to a conclusion. If you think I sound incompetent, what does everyone else think?”

“Whoa, wait a minute, I never said you were incompetent. I’m just worried about you.”

“You said ‘not yourself,’ and what does that mean if not incompetent?”

“I’ve never questioned your competence, Amy. Never—and you know it.” She did know it, and instantly felt guilty for doubting him. He had mentored her through undergrad and grad school, despite her more obvious disabilities: the amputation, panic attacks, and a period of irresponsibility that included excessive drinking and drugs. He was the first to recognize her unique talent for integrating the many disciplines required for her particular research.

“OK, I’m sorry. I’m just discouraged myself—“

“—And a little defensive, you might add.”

“Yeah, that too.” She glanced at her watch. “I better get in there and set up.”

He waved his hand. “A minute, please.” She sat down again.

“You know how valuable your research is to this university.”

“I hope so. I think everyone is excited about the work.”

“Yes, exactly. And tonight’s discourse is crucial to the future of the project. We need to appear strong, focused and confident. Please understand. Under the circumstances, I think it would be better if Dr. Myers and I led the presentation.”

The words ambushed her like an IED, and she gasped audibly. “Seriously, after the conversation we just had, you want me to stand by and let Myers take credit for my work? He’s a hack. He doesn’t even understand it.” Though she had been self-conscious in her classes for weeks, often calling on graduate fellows to explain simple concepts when her voice gave out, it never occurred to her that she wouldn’t be the one to explain her work to the DARPA panel. Now the truth exploded in her brain: Worth was right. Her voice would compromise the presentation. She sputtered angrily, helpless to argue; her spastic words would only be proof he was right, and what was there to say?

“Of course you’ll be on hand; and the work is yours. We’ll make sure you are given credit for it. It’s just hard to understand you sometimes. Your voice is so low and…shaky. I know you are confident and professional, but…you don’t sound it. It’s just this one presentation, that’s all.”

She stared at him, and her body went numb. So what if she was a little hoarse, if her voice cracked a little. No one could explain the concepts like she could. She tried to breathe through her diaphragm, in…out, in…out. Just this one presentation. But what about the next? Sweat poured off her forehead and her hands went cold. Not curable. How many times would those words assault her before they sank in? Everything she had worked for, her research, her careful preparation, the powerpoint slides and video on her computer—it was supposed to all culminate tonight in triumph. She reached her arms out, seeking something to grab onto, to steady herself. Worth caught her and grasped her arm. “Amy, are you alright?” The only sound she could hear was her heart pounding, the only sensation, panic. She felt dizzy, about to faint. Or scream. She didn’t trust her voice or her body.

Worth took a bottle of water off her desk and held it to her mouth. She took a sip and two big breaths, then another sip. “Amy, listen to me. You’ll get through this. Maybe the shots will help.” She was silent for several minutes as she fought to calm her breathing. Not curable. Her eyes filled with tears and she pushed him away.

“You might as well fire me,” she said. He stooped down and held her shoulders.

“Look at me. Nothing changes. You’ll continue to do your research; you’ll keep on teaching.” She lifted her head and glared at him.

“Right. As long as I don’t speak to anyone.”

 End of Excerpt