The gear is gathered on the lanai—a half-dozen7-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.

Read the rest at Indianapolis Monthly