By Chuck Strouse
By Scott Fishman
By Terrence McCoy
By Ryan Yousefi
By Ciara LaVelle, Kat Bein, Carolina Del Busto, and Liz Tracy
By Pepe Billete
By Ryan Yousefi
By Kyle Swenson
"If I had something like ALS, I'd say, 'Well, the hell with it. I'm going to retire and go fishing,'" says Dr. Bradley at Jackson Memorial. "Not Martin. Writing the book was important to him. I think in a sense it gave him a mission."
Carol had always considered herself a free spirit. Now, with Martin's never-ending needs, she became much more organized. She fed him. She bathed him. Mucus that a healthy person reflexively cleans from the throat would fall back into Martin's lungs. She cleared it out. At first there were caregivers at his side a couple of hours a day. Even then Carol had to stick around to put out whatever fires might arise. If she didn't set out Martin's urine bottle, for instance, the caregivers wouldn't know where to find it. Her life remained on hold.
"Once I would help him into bed I could leave him alone for awhile," she says. "But one time he went to answer the phone, he didn't realize he was losing his ability to control himself, and he fell out of bed. That's when I knew I really couldn't leave him alone anymore."
Martin needed Carol to give him his drugs. All kinds of drugs. Rilutek to protect nerve cells and the Sanofi drug to breathe easier. Gabapentin to decrease his body's production of glutamine. Martin would try anything, including, literally, snake oil. There was a snake venom that some study said would help. He asked Carol to inject him. She was afraid of needles, but he insisted. "When I jabbed the needle into him, I ripped open his flesh," Carol remembers. "I screamed. I hurt him so much. I felt so bad for him. He said he was sorry he'd made me do it, but I felt so bad, I wanted to leave right then and there. 'What am I doing here?'"
Run away. Catch a bus. Why not? Why did she stay? All her friends asked her that, constantly. So many people were amazed she stuck around to take care of him. She and Martin weren't married. She didn't owe him anything. Wasn't she the one who always left her men? Didn't she leave one husband after just six weeks? After a road trip? What was she doing now, virtually enslaved by a dying man?
"I loved him," Carol explains. "He was my best friend and my business partner. I could never leave somebody who was in that situation. People would actually tell me to leave, but it was too heartbreaking. And so selfish."
Carol stayed on as Martin descended into the final stages of ALS. As his body inched toward complete paralysis, they managed to finish a draft of the book. They found an agent and the agent led them to a small firm in New York willing to publish it. A freelance editor scrutinized the draft, sending back a long list of suggestions on plot, structure, dialogue, and characters. Every fact needed to be checked. In one scene, Abraham, an educated former slave leading the Maroons, whistled a song that didn't exist when the story supposedly took place. Martin searched the Internet until he found a more appropriate tune.
He worked an hour or two at a time. The writing came on top of his other responsibilities, most notably the mounting medical bills he had to navigate. He helped Carol plan for her future, telling her she needed to chart a clear course for her life. Only when he started the morphine did he lose some short-term memory.
"Who are you?" Carol would ask. "Why are you here? What do you do? You're writing a book. You need to finish it."
Right up to the end they worked on Freedom Land. Carol typed as Martin dictated his changes on a second draft and then the final draft. They'd work whenever he could find the strength. Sometimes they'd spend a half-hour scouring the manuscript for a single word that could be improved. They'd sit in front of the computer, his hand on the mouse that Carol moved for him. Sometimes he'd just sit there for long stretches of time -- ten or twenty minutes without saying a word -- staring at the computer screen.
"What are you doing, Martin?" Carol would ask finally.
"I'm thinking," he'd whisper in his fading voice. "We're writing."
Martin finished the book. A publication date was set, a month or so away. There was enough time left, he hoped, to start work on a second book, a memoir of his disease. But he didn't have much time left at all. On the last day of his life -- December 22, 2002 -- Martin discovered he could no longer speak. All he could do was blink his eyelids. There was no way to write. There was nothing he could do but lie in his bed.
"You could just tell he gave up the minute he knew he couldn't talk anymore," says Carol.
As he lay motionless in bed, Carol curled beside him, stroking his hair. She thought about their nearly fourteen years together, five with the disease. She thought about how his arms and legs had looked so strong when he glided across tennis courts. She thought about what he'd just accomplished -- writing and publishing a novel as his body collapsed. How many people say they're going to write a book? How many actually do? She stroked the skin of Martin's cheek. Until the moment he stopped breathing, she whispered in his ear. "You're an author," she said softly. "You're an author."