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Brian Hubbard finds his way back into the world of his friends through a cochlear implant. But all that is threatened by a decision to get a second one.
No hearing person could fathom such silence.
Brian J. Hubbard has metaphors for it: being buried 2 feet underground, falling into a deep trance, wrapping oneself in a cocoon. But those words barely evoke the entombment of a man who cannot see or hear.
Born with a rare genetic condition affecting his eyes and ears, Hubbard had gradually lost his vision throughout his life. His hearing, always poor, was also deteriorating as he entered his 50s.
So Hubbard, true to his daredevil nature, became probably the second deaf-blind person to get cochlear implants in both ears, in separate operations seven months apart. Cochlear implants are electronic devices that stimulate the auditory nerve to bring sound to the brain. But they also destroy any natural hearing a person may have.
The second operation, in March 2004, placed the implant in his left ear. The left had been his better ear, even though it provided just 10 percent of normal hearing.
Hubbard knew the operation would deafen that ear. He was prepared for that. Yet he was caught by surprise: he didn't anticipate how sorely he would miss his final link to the world.
"I am craving for some sound to come through the left ear," Hubbard wrote in an e-mail to Dayna Hume, his audiologist at the UMass Memorial Medical Center in Worcester, shortly after the surgery. Hubbard was still recovering from the surgery, and the implant had not yet been turned on.
Two weeks after the second surgery, he met with Hume to activate the second implant. This session would prove much less euphoric than the activation of his first implant, when Hubbard had thrilled to hear high-pitched sounds he'd never heard before. This time, Hubbard merely wept. It was a relief to have sound coming into the left ear. But left and right weren't synchronized; an echo scrambled the sounds.
Cochlear implants do not duplicate natural hearing. They offer the brain a slim selection of computer-generated sounds, and the brain grows around that information -- adapting, interpreting, building comprehension. That can take time.
Hubbard knew that, too. And yet, again, he was caught by surprise. Adjusting to the second implant was proving much more arduous than he expected.
"It sounds like your head is in a tin can," Hubbard said. "Boom, boom, bang, bang."
Every day, he faced a stark choice: Put up with the ceaseless metallic clatter of the implants. Or take them off and listen to bottomless silence. Before, even with no hearing aid and no implant, Sharron, his partner, could shout into his left ear and he'd hear her. But now, if a fire broke out while he was in bed or in the shower, she'd have to trace the letters F-I-R-E with her fingers in his palm.
He couldn't wait to go to bed. But as soon as he took off the processors, he sank into that tomb without sound or light.
Morning, too, brought dread: he'd don the speech processors with "butterflies in my stomach," worried about how he would hear. Truth be told, he was not hearing well at all. Why hadn't he left well enough alone? The first implant had worked so beautifully. Was he paying the price of greediness, of reaching for more?
Within a month, the butterflies turned into something worse. He was vomiting almost every day, and had lost his sense of balance. To ease his nausea and dizziness, he would lie in bed. But that made it hard to sleep at night, so he took to sipping brandy. Soon he had lost 45 pounds and was too weak to even walk to the computer, where he once had enjoyed writing voluminous e-mails to friends.
He slept 14 hours a day.
He fell deep within himself, the loneliest place on earth. Here, memory, grievance and regret had full reign.
Trained as a therapist, Hubbard knew the terminology for the family he grew up with. "Dysfunctional" sums it up. His father, the binge drinker, who once puked at 6-year-old Brian's feet. His mother, the "enabler," who loved you as long as you did things her way. His sister, the "secondary mother," always responsible, joining his mother in berating his father. His brother, the "lost" middle child. And Brian, the baby, the "family mascot" that no one took seriously.
They never affirmed his accomplishments, never offered any recognition -- except for his disabilities. And even that was slow in coming.
His parents never told him that he would go blind. He got his first hint from a stray comment by his sister when he was a sophomore in college. Later he found his parents in tears over the failure of a vitamin treatment they thought might save his eyes. With a feeling he described as falling off a cliff, it began to dawn on him that he was going to lose his vision.
But he adored his parents -- his mother was beautiful, and she had labored to teach him how to speak despite his poor hearing. He felt especially close to his father. Hubbard was 22, a senior in college, when a policeman came to his rented house in Northampton, Mass. His father, the respected superintendent of the Lynn post office, who despite his drinking had never missed a day of work, had been found hanging from a black electrical cord in the basement of his home.
Three decades later, alone in his dark and silent cocoon, Hubbard remembered, and thought of everything he'd done wrong. Three failed marriages. He had been impulsive -- perhaps self-centered -- in his relationships; people got hurt. He should have been a more patient husband. He should have been a better father to his daughter. And if only he had pursued his Ph.D. when he could still see and hear . . .
Sharron sat on the bed, day in and day out, tending to his physical needs even as she watched him retreat. She took a home-study course in graphic design to occupy herself. Although Brian and Sharron never legally married, Sharron had changed her last name to Hubbard and moved in with him years ago. She never told him that she opposed his getting the second implant. Now after months of watching her worst fears come true, Sharron was angry.
"I thought I had lost Brian," she said.
SALVATION CAME on a summer night, when Hubbard dialed 911.
Sharron was startled to learn he had just summoned an ambulance. "All I know," he told her, "is I just can't take this anymore."
She climbed into the ambulance with him; she had no idea what was going on. They sped to Newport Hospital.
In the emergency department, Dr. Winny Hung came over to find out what was wrong. She found a different kind of wreck than what typically comes to an emergency room, but a wreck no less.
In the bed a man was weeping -- babbling. He told her he felt broken, he had made a terrible mistake, he had wrecked his life, he was in total despair.
Hung took his hand. He felt the doctor's gentleness and compassion. Leaning toward his speech processor, she spoke the words he needed to hear, and he listened.
She told him that he had made the right decision -- he was just going through a healing process. She told him to give it time, and he would get better. He could handle it. He would be fine.
"You're a gutsy man," Hung said. "You're a strong man."
He felt like a baby. She put her arms around him.
THAT NIGHT, Hubbard started to get better. Or rather, he resolved to get better. He would get those damned implants to work together.
It didn't happen quickly. When by October the implants still weren't synchronizing, Hubbard got depressed again. Physical illness and mental distress were feeding each other. He developed kidney stones and pancreatitis. In December, he ended up at Newport Hospital with a kidney stone attack.
And there, he noticed something.
Something important had escaped him in the isolation of his home. Amid the clamor of the hospital, he noticed he was able to make out what people were saying. He could hear conversations -- he could hold conversations -- in that noisy environment. Hot damn! he thought, these things are finally working!
AS SPRING bloomed this year, Hubbard, now 58, realized he was hearing better than he had as a child, better than with advanced hearing aids, better than with one cochlear implant and one hearing aid. Better than he had ever imagined possible.
His ordeal proved worth it. Hubbard's surgeon, Daniel Lee, blamed his suffering on physical ailments unrelated to the implants. And the implant manufacturer, the Med-El Corp., said that most people adjust more easily to the second implant than to the first.
But Hubbard was convinced that the second implant caused the nausea and dizziness. Unlike most implant users, he is totally blind -- and in his view, that's what made the adjustment so hard.
In June, Hubbard had a chance to measure exactly how much his hearing had improved.
He returned to the implant clinic at UMass Memorial, for a hearing test with Hume. He entered a dim soundproof room. Hume went into an adjacent office, where she could see him through a window and speak to him through a microphone. Playing a series of "warble sounds," Hume confirmed that Hubbard could now hear the full range of sounds in normal hearing.
Then she played a CD of a man speaking sentences, and asked Hubbard to repeat each one.
She wants to start buying some stock, intoned the recorded voice.
"She wants to start buying some -- oh, God -- scotch?"
He repeated about 95 percent of the words correctly.
Then Hume played a tape of isolated one-syllable words -- "duck," "bomb," "June," "feet," "nail." Without the benefit of any context, Hubbard correctly repeated 70 percent of those words. In a hearing test before the implants, he had gotten only 24 percent of the isolated words right.
Now came the hard part -- understanding sentences amid background noise. The recorded voice was a scarce 10 decibels higher than the hissing of white noise, difficult for anyone to hear.
He found his brother hiding.
"This dog is rather frightened."
The team is playing well.
"The teen is crying loud."
In the end, Hubbard got 37 percent of those sentences right -- still a big improvement from his pre-implant days, when he couldn't make out a single one.
"It's a miracle," Hubbard said. "I'm telling you, it's a miracle."
After the test, they went back to Hume's office, to adjust his speech processors and catch up.
"Sometimes I experience slight dizziness," Hubbard said. "Now it's like, 'So what?' This is all worth it. That makes the dizziness get better . . .
"I don't think I'd have gotten as sick if I'd had the support of someone who'd been through implants," he said.
"Can you imagine all the other people out there who are deaf-blind who can benefit from this -- if they had some evidence that the stress is truly worth it?"
Hubbard told Hume he wanted to advocate for other deaf-blind people who are contemplating cochlear implants -- perhaps through his Web site, EmpowermentTherapy.com, which he hopes to build into an online counseling service for disabled people.
"Now I'm back in the tractor," he exulted. "I want to do things again."
Hubbard said he was looking for a guide so he could resume skiing. With his better hearing, the guide could speak to him through a microphone in his helmet, warning him of obstacles.
"I could never in a million years imagine skiing without vision," Hume remarked.
"You've got to be a little crazy," Hubbard said.
RAY BASTARACHE, Hubbard's friend from their hockey-playing days, says that Hubbard seems more spiritual since his ordeal. Hubbard agrees, though it's not a churchy thing -- it has to do with forgiveness, he says.
In those lonely months deep in his cocoon, Hubbard learned to forgive himself for his failings, and was thus able to forgive everyone who had failed him. He concluded that he had done the best he could, given who he was and what he'd experienced. And so had everyone else.
He forgave everyone, even the Fall River doctor who years ago had done probably the worst thing one could do to Hubbard: expressed pity for him. Hubbard had retorted angrily that the doctor was mistaken. "I'm a lucky man!" he declared, and now he believed it more than ever.
Lucky, above all, to have so many friends. His parents dead, his siblings estranged, Hubbard treasures and relies on friends accumulated over decades.
Dr. Jess Kane, an orthodontist and former fraternity brother, puts it this way: "He's the type of guy, once he befriends you, you're a friend for life."
About 30 of Hubby's friends for life gathered in August for an annual reunion that Hubbard organizes and Bastarache hosts. Larry Pleau, who used to play pond hockey with Hubbard when they were little and is now general manager of the St. Louis Blues of the National Hockey League, flew out for the party after a night of negotiating to trade a player. "He has a big heart," Pleau says of Hubbard, "and he never forgets anyone."
"We have an unwritten code," Hubbard says, "that the earth isn't a bad place to be as long as you are surrounded by loving friends."
The other day, Mike Lewis came by Hubbard's little white ranch in Newport. Lewis is a relatively new addition to Hubbard's collection of friends; he's a handyman whom Hubbard has hired for odd jobs over the years.
A recent job was assembling a new tandem bike. That led to an invitation: "Hey, will you ride with me?" Lewis agreed, and over the summer the two had wobbled their way to mastery of the machine.
Now, on a warm autumn morning, Lewis swung his leg over the seat, and stabilized the bike. Hubbard climbed on the back and grasped the handlebars.
And handyman and blind man pedaled down Kay Street, toward the beach.