The Blink of an Eye

Matt White—track star, sharp salesman, skilled golfer—has had almost everything taken away by ALS. He’s one of the luckiest guys you’ll ever meet. Just ask him.

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This article appeared in the April 2011 issue and is part of Indianapolis Monthly’s celebration of longform journalism. 

I’ve always felt that this story was about two heroes. The first, obviously, is Matt, who has faced ALS not only with bravery, but with humility and even humor that left me awestruck. But the second, more unsung hero, or heroine, is Matt’s wife, Shartrina. In many ways, I think Shartrina is the most courageous. Matt really had no choice—ALS came to him and he dealt with it. Shartrina, on the other hand, did have a choice. She could have left and lived her life free of the pain and burden. Instead, she chose love. –Tony Rehagen, author


 

Editor’s Note, June 2012: Matt White was hospitalized with pneumonia on June 26. Follow Matt White Cure ALS Foundation on Facebook for frequent updates about him and his charity work.

The gear is gathered on the lanai—a half-dozen 7-foot spinning rods, lined and hooked, along with a pair of dusty tackle boxes stocked with lures and weights. Down at the dock behind the house, a wide-decked, 23-foot Carolina Skiff bobs in the canal; in the kitchen sits a cooler packed with snacks and sandwiches. In the master bedroom, just off the lanai, Matt White watches SportsCenter highlights of last night’s Butler basketball game with one eye on the sky. Yesterday, the weather report said there was a 30 percent chance that a front moving toward Cape Haze from the Gulf of Mexico would produce rain—an event that would end Matt’s day before it begins.

Matt has been fishing the brackish Florida waters south of Sarasota since he was a boy on his family’s yearly vacation. His parents moved here from North Manchester, Indiana, while Matt was at Butler, and in the summers, he would often take his pole and go out alone. When Matt retired to Cape Haze seven years ago, he would fish at least twice a week, landing trophy specimens of just about every species that swims these parts. Shark and tarpon are the only prizes he still dreams about.

But it has been more than a year since Matt, 44, last got out on the water. He can’t just grab his gear and walk down to the dock. For the past decade, much longer than anyone, including himself, thought he could survive, he has lived with amyotrophic lateral sclerosis—ALS, or Lou Gehrig’s Disease—which damages the nerves that control voluntary muscle movement. Today’s excursion has required a week of careful preparation.

The mechanical boatlift that Matt and his father, Howard, designed and modified had to be tested to make sure it could still lower Matt’s 600-pound motorized wheelchair into the skiff. The batteries for his portable ventilator had to be charged, along with those that power the machine that his wife, Shartrina, uses to suction his saliva. The laser-triggered contraption that runs his specialized reel, enabling Matt to fish using only his eyes—the sole part of his body he can still control—needed to be checked as well.

In his mind, Matt has it all laid out: captain booked, schedule set, supplies inventoried. Everything down to what he will wear. All he has to do now is relay that last bit of information to Shartrina.

She emerges from the walk-in closet, frustrated. She bends to look into her husband’s bright blue eyes. “Wind shirt?” she asks. “What is it, a jacket?”

He stares back at her.

“A pullover?”

He blinks once.

“What color is it? White?”

He doesn’t blink.

“Blue?”

No blink.

“Black?”

Blink.

She goes back into the closet for about a minute and reemerges with a plain black windbreaker. “Is this it?”

No blink. Matt then shuts his eyes three times to signal that he wants to initiate their system. Numbers represent groups of letters: 1=A-D, 2=E-H, and so on. He found it on the Internet. Shartrina begins to count, “1, 2, 3, 4, 5.” Matt blinks on 5. Q-T. Shartrina recites, “Q, R, S …” Matt blinks on S. Slowly, number by number, letter by letter, he spells out S-T-O-N-E-H-E-N-G-E.

“It says ‘Stonehenge?’” she asks. “I don’t see anything like that in here.”

He just looks at her.

She rolls her eyes and turns back to the closet, muttering to herself: “He remembers everything he’s ever owned.” Matt’s mother, Connie, joins the search, and the two scour every closet and drawer in the house. It is almost 9 a.m. The sun is out, the sky is clear, and the boat captain will arrive any minute.

Shartrina returns with a white pullover. “I cannot find it, and I don’t have time to look,” she says. “Will this do?”

The two lock stares, and for a moment there is silence, broken only by Matt’s ventilator beeping and huffing and releasing. After about 30 seconds, Shartrina exhales and throws up her hands.

“All right,” she says, marching out of the bedroom. “I’ll look one more place!”

 

ALS attacks the nerves in the brain and spinal cord. Slowly, the motor neurons that send and receive impulses wither and die, cutting off communication between brain and muscle. Symptoms start as weakness, usually in an extremity, like an arm or a finger. Then the disorder spreads, killing nerve cells as it works its way through the body. No one knows the cause. Most patients live only two to four years after diagnosis. There is no treatment or cure. After a decade with the disease, Matt’s frame is a long, gaunt twist of skin, atrophied muscle, and bone; his hands, feet, and face limp and elongated.

But the disease does not impair the nerves that carry sensation. Matt can still feel the heat of a Florida summer, or, more often, cold, due to his drastically decreased body mass. He can feel the tickle of his little Maltese, Abby, licking his feet, and the warmth of a good-morning kiss from Shartrina.

The parts of the brain that control thought and memory are not affected, either. From his motorized wheelchair positioned in front of his bedroom TV, or in the living room in front of his computer, Matt still focuses on everyday problems. He watches CNBC, scanning the ticker for his stocks and looking for other opportunities—not for a quick day-trade buck, but for longer-term investments. He burns through audio books, gardening tips to philosophy to Ayn Rand, on his MP3 player. He worked with Shartrina to design their organic box gardens—transmitting his plans through e-mails composed using a computer program that literally reads his eyes. He customized an entire language built on blinking, and concocted his jury-rigged fishing reels out of parts from household appliances. He has been so busy, he seems to have forgotten that when he was diagnosed more than 10 years ago, the doctors gave him only five years, at most, to live.

Matt sometimes has to slow himself down to take in the majesty of a storm. The vastness of the sea. The sport of fishing.

On his bedroom wall hangs a massive oil painting of a tree-lined thoroughfare in Boca Grand, a small beach community on Gasparilla Island, less than 10 miles from his home. Matt commissioned the work from a local artist. During the early years of their relationship, Matt and Shartrina would often visit shady Banyan Street, named for the sentinel trees whose trunks, actually the banyan’s huge roots, look like twisted bundles of waterlogged rope. Banyan seeds germinate in the branches of a host tree, sprouting roots that wind down into the ground. As they grow, spreading a large crown of broad, leathery leaves, they obscure their host, which diminishes and eventually dies from lack of light and water.

In Matt’s painting, the lines are soft and the colors blend to give the picture a haze, almost like a dreamscape. The road is shrouded by the canopy, a tunnel of gnarled trunks. At the end of that passage, where the banyans unravel, is a burst of white light.

 

Matt was an early Christmas present, born December 22, 1966, in Valparaiso, Indiana, six weeks premature and severely jaundiced. On Christmas Day, he received a complete blood transfusion, and for the first few years, he was prone to fevers and convulsions. His parents kept a bottle of phenobarbital handy to salve the spells, and eventually Matt grew to be a healthy child.

Matt was bright and independent, and showed an almost preternatural ability to concentrate. When he finished an in-class assignment ahead of his schoolmates, he would take out a book. Sometimes he would still be buried in his reading long after the class had moved on to the next subject. In fifth grade an instructor apologetically gave him a “B” in math because Matt was working through the problems so quickly, his handwriting was illegible. “When most people are faced with something they don’t want to do, they procrastinate,” says Matt’s father, Howard. “Not Matt. His philosophy was always, ‘Get it behind you.’”

Matt’s family bought a farm outside of North Manchester in northern Indiana in 1981. The house was always filled with boys who came over to shoot pool and play Atari. Matt was also popular with the girls. “The night the new phone book came out with our names in it, the phone rang off the hook,” says Connie. “I got tired of it. So did Matt. After a while I asked him, ‘Well, if you don’t like them, why do you talk to them?’ He said, ‘I don’t want to hurt their feelings.’” Matt didn’t have time for a girlfriend, and he razzed his buddies when they scheduled around theirs.

In the fall of 1982, however, when Matt was 15, an older high-school friend started dating a girl from a neighboring county. That girl had a 15-year-old friend whom she wanted to set up with Matt. On their first date, Matt and Shartrina Robinson sat up in a park, talking all night over a contraband bottle of cold duck. They set up another double date. And another. She was taken by his bright blue eyes and long lashes. He told her she was pretty and joked that she was a big-city girl from Warsaw (population 10,000). She and her friend even made the 30-minute drive to North Manchester (population 6,000) to toilet-paper Matt’s house on Halloween. But when the older couple split after a few weeks, Matt and Shartrina lost their respective rides and, gradually, their connection.

As a young boy, Matt played football, baseball, and basketball, and he was a star point guard with quick hands. But he grew more interested in individual sports like track and cross-country. “In basketball, the coach is in control and you’re relying on your teammates,” says Howard. “When you’re the fastest guy on the track, it’s just you and God.” Matt took up golf, too, and every free and fair weekend or night after school, Matt and his pals would toss their clubs into the trunk of Matt’s rusted yellow Impala and tear up and down the rural highways and low dirt roads of Wabash County in search of a game.

Eventually, Howard and Connie sold the farming interests to run a Sears outlet in North Manchester. Matt helped with deliveries. He was reliable and good with people. When Howard would have friends in sales over to the house, Matt would hang around and listen to the adults discuss business.

Matt received a track scholarship at Butler, and in 1985, he packed up the Impala and took off for Indianapolis. He trained tirelessly, lettering in track and cross-country all four years. He chose to major in TV and radio and gravitated to the business of advertising sales. His fraternity brothers would tease him because he seemed to be invited to every sorority party on campus.

After his freshman year of college, his parents left Indiana for Florida, and Matt would stay with them in the summer. Every chance he got, he would head to the Intracoastal Waterway. Fishing was a chance to escape, to chew tobacco without catching hell from his mom. But it wasn’t purely recreation. Matt didn’t sit on the bank and wait for a passing bite. He would wade into the grass flats and shallows where trout hid behind the rocks, watching the surface for bubbles. He often hooked his limit. And when the quarry was fought out and reeled in, Matt would admire the thrashing animal. Then he would almost always throw it back.

 

As the Carolina skiff accelerates out of the cove and onto the Intracoastal, the speed washes over Matt’s body, air roaring in his ears. He’s flying.

“Should I go slow?” yells the captain.

“No,” says Shartrina. “He loves this.” She stands by the chair, holding up Matt’s head as the craft skips up the waterway toward the very shallows in which Matt once waded.

The captain cuts the engine and comes to a gentle halt above an oyster flat where he says he has found fish before. Shartrina takes the joystick and moves Matt’s chair until he is facing starboard, inching the front wheels up to the edge of the boat.

“Are you ready?” she asks.

Matt blinks emphatically.

Like everything else in Matt’s life, his fishing technique has had to evolve. And his adaptations have had to arise almost entirely out of his own imagination, relayed to Howard, who builds the contraptions out of spare parts in Matt’s garage. When Matt first began to lose strength in his arms, they modified a wheelchair, adding a rack for a battery and welding on a fishing-rod holster near the armrest. They affixed a windshield-wiper motor to the spinning reel, wiring the motor to a flip switch. When Matt lost control of his fingers, they mounted a guitar pedal that Matt could use to reel in or let out line. As Matt’s foot weakened, Howard made the pedal more sensitive, until Matt lost use of the foot altogether. When speaking became too difficult, Matt committed his designs to e-mail.

Shartrina grabs one of the rods and baits the hook with a live shrimp. A petite but muscular woman, she rears back and casts the line out about 30 feet, and then slides the rod into the holster on the wheelchair. She then takes out Matt’s most recent innovation. Following Matt’s design, Howard drilled a hole in the right lens of a pair of sunglasses and attached a fiber-optic laser trigger. A long black wire runs from the trigger to the wiper motor. When Matt sees his neon-yellow bobber go under, he blinks to activate the motor, hoping to bring in a catch.

The sun shines unabated, shattering into tiny shards on the rippling water, a dazzling display off the bow. There is no sign of the predicted storm. But after an hour, no one has gotten more than a nibble, and gradually Howard and the captain drift into conversation about the passersby who, without fail, give the White skiff an incredulous double take. As the boats speed past, the men take turns pointing out the erratic drivers and errant courses, making playful bets as to where and when each will accidentally run aground. Shartrina is taking a break as well, perched atop a cooler, dipping celery sticks into a bag of homemade hummus. Matt’s eyes never leave the bobber.

Suddenly, the wiper motor whirs and Matt’s reel spins. “Got one?” asks Shartrina. Howard and the captain lower their rods and watch as she runs to Matt. She reaches over the side of the boat and grabs the line, pulling up the hook where what’s left of a shrimp dangles, lifeless, its tail bitten off.

 

Six months after graduating from Butler in May 1989, Matt took a job selling advertising for WENS, an Indianapolis soft-rock station. His talent was clear from the start.

Matt had a way of explaining things. If a client seemed uncertain or confused, Matt could lean in, bat his eyes, and boil down his position to a few powerful words. Sometimes he would concoct quirky homespun analogies to illustrate his point: We want trees, but I don’t see anyone willing to move the clouds for sunlight, or Cows can’t produce more calves without a bull. “He was always talking about what was possible,” says a friend and former colleague. “He would say, ‘When you focus on the things you can’t control, you adversely affect the things you can.’ That’s how he sold.” Within seven years he was promoted to local sales manager at Indy’s classic-rock WNAP-FM. (Like the other stations Matt would work for, it was owned by Emmis Communications, which also owns Indianapolis Monthly.) He was only 29 years old.

Young, handsome, and athletic, Matt was one of the city’s most eligible bachelors. But he was humble about his romantic life, often content to just hang out with the guys. He was the facilitator, always bringing people together for golf or dinner or drinks. Every year he would organize a group of 20 or so friends and frat brothers to go to the Indianapolis 500. He always picked different seats and made sure the coolers were packed with sandwiches and beer. When his mother bugged him about settling down, Matt always explained that he was waiting for a woman for whom he wouldn’t have to adjust his schedule. While working in Indianapolis, he met Linda Martin, a fellow radio account executive. She was a few years older, but every bit as dedicated to her work and driven to succeed. Like him, Linda liked to drive fast and play hard. She also loved golf. They dated for about a year, and he brought her home for Christmas in 1996. They were married on a winter cruise to Barbados less than a year later, and moved into a big house on Fall Creek Road right next to the Hillcrest Country Club. Now Matt had a burgeoning career, a beautiful wife, a long tee shot, and a 9 handicap.

One day in 1998, Matt was thawing out in the clubhouse shower at Hillcrest after a cold February round of golf. As he scrubbed his soap-lathered face, he poked himself in the eye. He looked down at his hands. His left index finger was bent. He could not straighten it. He shook it off as nothing.

The following year, Matt was promoted to general sales manager at a station in Chicago called Q-101. He and Linda bought a grand two-story house with a basement, and in a few months Matt had established himself as a leader. He got along with the people who worked for him, but he pushed them with his thorough, detail-oriented style. Once, when composing a job description for a sales assistant, he typed out a three-page document, single-spaced, that ended with “and anything else I can think of.”

Matt had begun to notice problems with his golf swing—particularly in his left arm. He thought it might be a torn rotator cuff, perhaps from playing too much. Then one morning, while pulling a gallon of milk out of the fridge, his strength suddenly gave out. The jug fell to the kitchen floor. At Thanksgiving, Matt’s uncle, a doctor, noticed the shrinking muscles in Matt’s hand and arm and convinced him to see a neurologist at Northwestern University. In January 2000, after a series of tests, the doctor called Matt and Linda to his office.

 

Matt was 33. He ran the Mini in Indy every year. He knew nothing about ALS, but he was sure it was just another chore he had to get done and put behind him. Pills? Shots? Surgery? Rehab? No problem. How long would he have to be off the golf course?

The doctor told Matt that there was no treatment. There was no cure. Over the next two to five years, he would gradually lose control of his muscles until he would be unable to breathe on his own. He would then be hooked to a ventilator. Or he would die.

As the shock wore off, Matt quickly came to two concrete decisions. First, he was never going on life support—when God came, he would be ready. And second, in his remaining years, he was going to do everything. He was going to see the Grand Canyon and the Great Wall of China. He was going to the Super Bowl.

And, if his buddies had anything to say about it, he was going to play the most legendary golf courses in the world. Throughout 2000 and 2001, Matt’s friends and colleagues organized a dream tour. Muirfield, designed by Jack Nicklaus, in Ohio. Century-old Oakmont in Pennsylvania. Winged Foot in New York, where Bobby Jones won his third U.S. Open in 1929. Matt played nine courses in less than two weeks. But as the disease weakened his body, his scores mounted along with his frustration. He couldn’t grip the club. He considered giving up. Then one day at a municipal course in Michigan, Matt noticed a one-armed golfer teeing off. He struck up a conversation with the man, who showed Matt his secret—a special glove with a strap that wrapped around the grip to steady the club shaft.

Matt continued his tour. A friend got the governor of Georgia to score a tee time at Augusta, home of the Masters. Matt flew to Scotland to play St. Andrews. But ALS slowly claimed his left arm and started on the right. In October 2001, Matt played what he had decided would be his final round—Cypress Point in California.

But his friends had planned a surprise. After an early dinner, they drove the few miles from Cypress Point to Pebble Beach. They had arranged for Matt to play one last hole—the legendary 7th, a par-3, 95 yards downhill to a green that juts out into the Pacific Ocean.

Matt grabbed his 3-wood and teed up. Racked by disease and exhausted from a day of golf, he flailed at the ball a dozen times, failing to move it more than 10 yards.

Then he had an idea. Standing at the tee, he shifted to his left, toward an asphalt cart path that ran down the hill. After a couple of tries, he slapped the ball onto the path, where it bounced all the way down into the rough just short of the front bunker. Three shots later, he was on the green, 15 feet from the flag. With one last push, he rattled the ball into the cup for a double bogey.

The friends popped a bottle of Champagne they had snuck in and sat on the black rocks behind the green. They laughed and hugged and listened to the waves as the sun sank into the Pacific.

 

While Matt was milking every last golf shot out of his arms, friends started to notice trouble in his marriage. Upon Matt’s return home from one trip, a friend says, Linda appeared to have had no idea where her husband had been. In September 2001, at a fundraiser for Matt, Connie observed that Matt and Linda were not sitting together. And as Matt read his speech from papers he could barely hold up, pleading for the teary-eyed gathering not to pity him but to appreciate their blessings as he was counting his, he never once mentioned his wife.

In fact, things between Matt and Linda hadn’t been the same since that day in the doctor’s office. The diagnosis had driven a wedge between them, and as Matt’s condition deteriorated over the next two years, the two halves came apart. When he was no longer able to open the refrigerator door, she was not there to help. As the disease spread to his legs and he was confined to a wheelchair, she was not there to push. One day in December 2002, Matt rented a moving truck and waited for Linda to leave for work. While she was gone, Matt’s buddies loaded his clothes, his bed, and some other belongings from the house into the truck and moved Matt into a downtown Chicago apartment. He left a note on the kitchen table with the number of his attorney. “Tragedy can pull a family together,” Connie says. “Or it can pull them apart.”

For the next six months, Matt continued at his job. A hired attendant got him out of bed, helped him shower, shaved him, dressed him, buttoned his shirt, and fixed his breakfast. He would keep his office door shut while he struggled to put on his suit jacket and make sure someone else opened the ketchup bottle at lunch. The muscles in his throat began to fail, making it increasingly hard to swallow, so Matt had a feeding tube installed. He joked that since he no longer had to have his food cut up and fed to him, he could focus on business at lunch. But soon speaking became so difficult that Matt was having colleagues read detailed, pre-prepared pitches to clients at the table.

Finally, in the summer of 2003, Matt announced his retirement. He made plans for his final estate, took one last trip to Indianapolis to prepay for a plot at Crown Hill, and asked his mother to start looking for a house near her and Howard on the west coast of Florida.

In November, almost four years after his diagnosis, Matt moved down to Cape Haze. His house had five bedrooms (so friends could come visit) and a pool in the middle of a sun-drenched, screened-in lanai, beyond which ran a canal where Matt could fish off the dock. He bought a boat to take out onto the nearby Intracoastal. And with savings, disability, and continued health insurance, he paid for nurses and attendants. The plan, Connie says, was that she and Howard wouldn’t have to lift a finger.

 

In March 2004, Matt began to experience severe pain after eating. He was rushed to a Sarasota hospital, where doctors found that his feeding tube was partially disconnected near the point of entry into his stomach. Liquid food had been leaking into other parts of his body. The doctors determined he was septic and would have to be checked in.

During his stay, the doctors ordered X-rays. Howard was with Matt, and he watched as an orderly clumsily moved his son from the X-ray table onto the gurney. Howard walked alongside as Matt was wheeled back to his room.

Scuttling down the wide white corridor, the father looked down at his son. Matt was quiet, his eyes closed. Howard bent down. Matt wasn’t breathing.

Hospital staff rushed Matt to the intensive care unit, where Howard and Connie watched from the periphery as doctors applied a mask and tried pumping breath into Matt’s mouth. “Turn up the oxygen! Turn up the oxygen!” a doctor yelled.

“It’s going full blast,” came the reply. “He’s not getting air!”

Looking back, Howard thinks the awkward move from the X-ray table must have shifted Matt’s neck to a position that closed off his airway. Matt didn’t have the strength to correct it. Doctors said they could resuscitate him, but the procedure would be invasive and lasting. Howard knew that Matt had said time and again that he didn’t want to be on life support. That when it was his time and place, he wanted to go. But Howard couldn’t let his son slip away. This was not the place to die, he decided.

The next day, as Matt lay awake in the ICU with a plastic hose carrying oxygen into his lungs, Howard tried to explain. The airway tube made it impossible for Matt to speak, but he was obviously upset. Howard and Connie had brought in a laminated alphabet placemat so their son could point to the letters with his toe and spell out what he wanted to say. He kept pointing to the N and the O, the N and the O.

No. No. No.

 

I moved here ready to die, booms the deep computerized baritone from Matt’s living-room speakers. I really felt that I had accomplished all that I had wanted to. It was time.

Matt is in his wheelchair, head propped up and aimed at the laptop in front of him. He’s wearing wire eyeglasses with a viewfinder on the right lens that contains a tiny chart of letters. When Matt holds focus on a letter, a microcomputer gauges the eye’s position, and the machine beeps as that letter appears on the computer screen. This is how Matt surfs the Web, types e-mails, updates his fantasy-football rosters, and trades stocks. And thanks to a speech synthesizer, it is also how he talks.

Since he started losing his voice, Matt has become more and more reliant on the computer. At first, he moved a mouse ball with his foot and was able to type about 30 words per minute. When the foot went, he switched to a headband laser device that allowed him to point to letters using the muscles in his forehead, slowing him to five to 10 words per minute. With his new device, it takes Matt 10 seconds to type out each character. I have learned to be very patient, says the electronic voice, its inflection misplaced.

After he was resuscitated, Matt stayed in the hospital for seven weeks. He returned home to fight off infection from the feeding tube and chronic pneumonia from his tracheotomy. He also struggled to grasp the second life he wasn’t sure he was supposed to have. That August, as Category 4 Hurricane Charley rolled up the Gulf Coast toward Cape Haze, Matt was unable to evacuate for fear of getting stuck in traffic with all of his medical equipment. Howard hooked Matt’s ventilator to a 5,000-watt generator, and Matt and his parents sat at the kitchen table, just off the lanai, watching the deck furniture bob in the pool and listening as rain slapped against the glass doors and the house moaned.

After I got out of the hospital, I was miserable all that year, the machine says. But I was alive. God’s will. And aside from the spiritual and philosophical questions, Matt’s extended life posed some very tangible problems. Four years after his diagnosis, he was approaching the limit of an ALS patient’s life expectancy. Now that a machine was breathing for him, how long could he keep going? His insurance wasn’t going to last forever. Paying for attendants and nurses was already stretching the budget. And his other caregivers, his parents, were well into their retirement years. What if one of them got hurt or fell ill? Howard says he and Connie were privately praying for an angel.

 

Shartrina Robinson graduated from Warsaw High School the same year Matt donned the cap and gown at North Manchester, 30 miles away. She went to Purdue to study education while he was just south on I-65 at Butler. She married, had two boys, and eventually divorced. She moved to Chicago in 2000, several months after Matt, taking her regular runs along the same lakefront that he often jogged. But the two never crossed paths.

In the spring of 2005, Shartrina was scheduled to give a teaching presentation at a school in Naples, Florida. She mentioned the trip to an old high-school friend, who brought up Matt White. The friend told Shartrina about the disease and the divorce. Naples isn’t too far from Cape Haze, she told Shartrina, and gave her Matt’s e-mail address.

At first, the correspondence was awkward. But Matt quickly diffused the tension. “I am hooked to a vent, and I have these hoses coming out of me,” he wrote. “But I don’t think I look like a vegetable.” Over the coming months, the two exchanged more than 100 e-mails—messages that evolved from updates into love letters and poems.

In April, Shartrina climbed the stairs of Matt’s house nervous, as if she were on a blind date back in high school. But as she approached the wheelchair, Matt looked at her with the same blue eyes and long lashes she had once fallen for. The two went out onto the lanai and talked until midnight.

She came down again in May. And then again in July. She was taken by his courage and his honesty, both with himself and with her. He was inspired by her openness in receiving those often-blunt realities. “He was not afraid to put himself out there,” she says. “And he was very direct in asking how I felt about his situation.” When the two started talking about living together, he e-mailed Shartrina a list of more than 50 daily tasks she would have to perform to care for him, from lifting him out of bed in the morning and bathing him, to suctioning mucus and plucking his nose hairs. He even stipulated that she would have to learn to operate his fishing boat.

For her, the hardest part was not accepting what life with a paralyzed man would be. It was coming to terms with what might have been. “Every night I would cry,” she says. “I was grieving for the things I’d never be able to do with him. But it was impossible to walk away. How do you stop yourself from falling in love?”

They were married on the lanai on May 20, 2006. Matt tucked his hoses beneath his tux and wore a cravat to hide his trach. They exchanged vows they had written—Matt’s best man read his aloud. From then on, on the 20th of every month, the two would race to tell the other “Happy Anniversary”—why risk waiting a year? Matt always seemed to win. Even as the disease disabled the muscles in his throat and he stopped speaking entirely, Matt was able to make just one sound, and only for Shartrina. She knows it to mean “I love you.”

Once, Shartrina had the notion to surprise Matt by planting a banyan tree in the backyard. She discovered that the parasitic stranglers were illegal to transplant in Florida, so she bought him a tiny bonsai banyan instead. But weeks later, Matt noticed a knotted banyan root growing on the branch of a tall palm just off the lanai.

 

Shartrina wipes the sweat from Matt’s face with a towel, dabbing away the white blobs of suntan lotion that have caked around his lips. Then she slides a squirming shrimp onto Matt’s hook, brings back the rod, and hurls the bait out into the water. For a moment, she stands and watches the yellow bobber. Then she places the rod in the holster and puts her hand on Matt’s shoulder, wishing him luck.

Engine off, the Carolina Skiff slips quietly into a nook in the waterway, sun bouncing off the bottom only four feet down. The captain has said that it’s time to turn for home, but they will hit this one last spot along the way. Wind rustles the tall grass on shore, just a few yards away. And then all is quiet except for the pendulum breaths of the ventilator. Matt is running out of time.

His eyes are locked on his float, wobbling a little in the occasional breeze. Suddenly, a quick jerk downward. The bobber disappears.

The wiper motor purrs, and Matt’s reel spins to life. The captain and Howard follow the commotion as Shartrina makes for the line, now taut. “You’ve got one!” she says, moving to the edge of the deck. Matt slowly brings the bobber closer. Shartrina bends down and rises with a wriggling silver fish, iridescent with hues of blue and pink, at the end of the line.

She lifts the fish into the boat, where the captain unhooks it and holds it up. “Sea trout,” he says. “That’s about 14 or 15 inches.”

Shartrina takes the trout to Matt. She removes his sunglasses and leans over his shoulder, holding the fish in front as the captain snaps a photo. Matt’s eyes are bright, smiling by themselves. He releases a growl of excitement.

As the celebration wanes, Matt indicates that it’s time to release. The captain takes the trout and tosses it back into the Intracoastal. Matt blinks a few times to Shartrina, who starts counting through the letters. “F-U-N.”

 

Never mind that Matt had no tickets. In late March 2010, he, Shartrina, and a group of friends watched on TV as the Butler basketball team beat Kansas State in the Elite Eight of the NCAA tournament. Matt’s underdogs were going to their first Final Four, in Indianapolis. And he was going with them.

He had no practical way to make the 1,000-mile trip, and nowhere to stay. But his Indiana connections came through—a hotel, a private plane, tickets for him and Shartrina. And when Butler coach Brad Stevens learned of Matt’s plans, he invited the alum to speak to the team before the semifinal game.

Matt knew exactly what he wanted to say. But he had less than a week to put all those thoughts to computer, and typing letter by letter with his headband writing device, he could only produce 40 to 50 characters per minute. While Shartrina frantically dealt with the logistics of getting Matt and all his equipment to Indiana, Matt lived at his computer. He worked into the early morning, refusing to shower, neglecting his rest. He got sick, sweating cold and running a 102-degree fever. He finished in the dead of night, hours before they were scheduled to depart.

Reporters and news cameras from around the country greeted the Whites at the Indianapolis airport and followed them to the locker room the day before the Bulldogs were to take the Lucas Oil court. Shartrina stood by Matt’s chair as she recited his speech to the players. “I try to live like you play,” she read. “You are my inspiration.”

The next night, Matt was sitting among the hometown crowd as his team upset Michigan State and earned a trip to the championship game—his body buzzing with all the elation and electricity that he was unable to express. Likewise, he had no way to release his disappointment two nights later when Butler’s final shot bounced off the rim, leaving the upstarts two points shy of the impossible. The Bulldogs had pushed themselves to the brink.

So had Matt. When he returned to Cape Haze, he was exhausted, no longer able to move the muscles in his face or forehead. Now his eyes were his sole means of communication, his last contact with the world around him. Outside, the banyan that had appeared on the palm tree years before had spread its roots down and around the trunk of its host and into the ground. Beneath the tangled mass, the palm was almost obscured, with one small branch reaching out for the sunlight.

 

It’s late afternoon. The sun begins its descent, and the shadows stretch across the deck. The captain declares it’s time to reel in and head back to the dock. The motor awakens, and the boat cuts south down the calm Intracoastal.

For one last time today, Matt takes flight. The wind and wash soothe his sun-baked skin. Who knows when he might get to feel this again? Suddenly he starts blinking furiously behind the sunglasses that have slid down his nose, trying to get Shartrina’s attention.

“What is it?” she shouts over the engine, reading his eyes. She runs through the system of letters as he blinks out a sentence.

“The Gulf?”

Blink. Blink.

Shartrina looks at the captain behind the wheel. “Do we have enough time?”

The captain turns the boat slowly to starboard, toward Stump Pass, which links the Intracoastal to the Gulf of Mexico. It’s a route Matt knows well.

As the skiff approaches the pass, the breeze picks up. The air cools, and the murky water turns to a rippling emerald green. Four-foot swells begin to rock and toss the craft. Slowly the shoreline opens up, the confined waterway spilling out into the wide, rolling gulf. Tall gray mushrooms of sea fog sit low on the horizon. It’s like looking off the edge of the Earth.

Matt’s father spots an osprey perched on a barren limb on the island behind the boat. The captain points out the dorsal fins of two dolphins to starboard. Shartrina watches the black shape of a manta ray swimming just off the bow. Matt faces forward, watching the fog drift inland. The ventilator pumps breath deep into his lungs. He stares into the storm, finally approaching. He doesn’t blink.

 

Follow: For frequent updates on Matt and more, find Matt White Cure ALS Foundation on Facebook.

Photo by Tony Valainis

This article appeared in the April 2011 issue.

 

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