OCALA
On a bright, breezy morning in early spring, the old sculptor got his first sign that the end was near.
He was working in his studio — the screened carport off his trailer — sipping cold coffee, smoking a hand-rolled cigarette, listening to a cassette of Miles Davis’ Kind of Blue.
Above him, paper cranes flew from thin wires. Around him, wind chimes danced.
He was hunched over his desk, cradling a plum-colored Christmas ball in his lap, scowling at a strand of nylon thread, trying to tie a knot. Just a simple knot. For two hours, his gnarled fingers had been fumbling with that thread.
Ronald “Ted” Andrews, 81, was proud to say he never asked for help. In all his years, through all his adventures, he always had done things his way.
That morning in March, his hands were so sore, his back ached so badly and he was so weak from hunger, he thought about shelving his art.
“When I can’t create anymore,” he had once declared, “I’m done.” He swore that when that time came, he would end his life.
Now he couldn’t even finish a mobile.
“Carolyn!” Ted barked to his wife, his voice raspy and weak. “Carolyn! Get out here! Now!
“I need your help.”
March
Ted said he used to be beautiful. Thick brown hair, a knowing grin. “I was a Golden Glove boxer, strong and sexy,” he bragged. “I was an Adonis.”
But after Lou Gehrig’s disease ravaged his body, after he dropped below 100 pounds and could barely heft himself out of his chair, he looked more like Gollum than a god.
His oversized elf ears protruded behind caved cheeks. His bald head and Abe Lincoln beard seemed too heavy for his neck. Beneath his thin cotton shirt, his bent backbone bulged. “I’m not pretty anymore,” he kept saying.
Talking was difficult. He had a rattling cough and kept spitting dark phlegm into a yogurt tub. But his gray eyes were bright, his words impassioned.
He was going to use his last days to do something grand, he said, something to fix this doomed country, to help his wife pay the bills after he was gone.
He wasn’t going to just wither away and let the disease win, he said. When life wasn’t fun anymore, he was going to exercise his right to die.
In Florida, where doctors cannot help terminally ill people take their lives, Ted said he was determined to find a way to do it himself.
But how do you decide when life is no longer worth living?
When it’s time, would you be able to let go?
Ted said he wasn’t afraid to die.
Ted said a lot of things.
e grew up in New York nightclubs. Prohibition had just been lifted, and his mother was a torch singer. “The most beautiful woman in the world,” Ted said, “with a voice like an angel.”
His parents divorced when Ted was 6. At 12 he became an altar boy. One Sunday, while he was cleaning up after Mass, he found a bottle of Mogen David wine beside the chalice. “Blood of Christ? My butt!” Ted remembered shouting. “And I never went back again.”
Backstage during his mom’s shows, Ted drank the dregs of the performers’ drinks, smoked dope with the trumpet player and picked up cash running errands. By 15 he had saved enough money to buy a battered Chrysler coupe. He saw a Life magazine ad for sunny California and, with $283 in his pocket, drove west on Route 66. He didn’t have a driver’s license. Didn’t leave a note for his mom.
He landed a job at a Los Angeles go-kart factory, started driving Formula Junior race cars. He was 19 when he topped 100 mph, crashed into a wall and woke up in a body cast. “They told me I’d never walk again,” he said. “Dumb doctors.”
In 1960 Ted moved up the coast to San Francisco and started experimenting with sculpting metal: brass eagles and wire swans, copper guitars and horns. He hung out with friends in clubs, cruised showgirls in Vegas. His wit was so sour, his pals dubbed him “Prince Vinegar.”
“It was so grand, so decadent and exciting: the fastest cars, top-shelf sherry, sophisticated women in sleazy bars,” he said. “I think that’s why God is punishing me now. Only I don’t believe in God.”
Ted was “a hustler, a scalawag,” said Truman Jones, a jeweler who had known him a half-century. “He was a very odd, unique mixture of ideas who told so many outlandish stories. You had to take them all with a grain of salt.”
Ted got married, had a son, then got divorced.
He had been a bachelor for 17 years when he met Carolyn, who was working in a deli and made him a sandwich. She had been an American Airlines stewardess, landed in San Francisco and decided to stay. Ted offered to show her around: the best food, the most luxurious hotels.
He drove her to Doggie Diner for a bratwurst. The next year he went to Woolworth and bought her a 99-cent ring.
They honeymooned for a month in a tent, feasting on trout he caught in a nearby stream. “She looked like Natalie Wood,” he said.
Carolyn said, “He was so good in the sack.”
While Ted made art and drove limos, Carolyn paid the rent with her waitress jobs. “Every once in awhile,” she said, “he sold something big and handed me a chunk of money.”
They had been married for 15 years when Ted’s mother got sick, and they moved to upstate New York to live with her. For nine years they nursed his mother through stomach cancer and Parkinson’s disease, through chemo and being bedridden. “I won’t let that happen to me,” Ted kept telling Carolyn. “I won’t do that to you.”
ight months earlier, when doctors had first given Ted a death sentence, he didn’t believe them. So what if he was losing weight? Losing focus? Losing his balance? That didn’t mean he was dying. “Dumb doctors,” he kept telling his wife.
Finally, Ted went to a neurologist, who confirmed he had Lou Gehrig’s disease, also called amyotrophic lateral sclerosis, or ALS. The doctor said he had about a year.
Ted would get weaker, lose most of his muscle control. He would need help showering, walking, going to the bathroom. His throat would start to close. He might need a feeding tube.
Carolyn, 72, didn’t think her husband was dying. She kept making him “love potions” laced with colloidal silver, vitamin D3, leaves from a Moringa tree. She told him, “They used it to ward off the bubonic plague!”
But Ted seemed obsessed with death. He kept drawing lines, setting limits on his life: When he could no longer work. When he couldn’t eat steak. When he was stuck in a chair. When he became a burden. “I’ll just know,” he said. “Then I’ll go.”
Finally, he got so worked up about being able to control when his life ended that Carolyn got worried he would do something stupid. She contacted an organization called Compassion & Choices, which helps educate people about end-of-life options.
That’s how they met Dr. Barbara Toeppen-Sprigg.
April
On a warm afternoon, Ted wobbled into the doctor’s spacious home, leaning on a new bamboo cane. Carolyn followed, carrying a galaxy of plum-colored globes.
“Oh, Ted, it’s lovely,” said Barbara, 71. “Let’s take it out here, on the lanai.”
She had invited them over to help them fill out their living wills. Ted had told her he was bringing her his last mobile. So she had set up a stepladder and hung a hook in the ceiling, above a table that held a turquoise urn.
She wanted Ted’s art to spin above her husband’s ashes. She had lost Bob two years earlier, when he had chosen to end his suffering from Huntington’s disease. His death would have been long and painful; he would have been bed-bound, starving. “He didn’t want to dwindle away in some nursing home,” Barbara said.
Watching her husband navigate his illness, realizing how few options he had to end his life in Florida, had led Barbara to counsel terminally ill people. “Bob and I were lucky,” Barbara said. “He knew exactly what he wanted. And we had the means.”
In the United States, Barbara told Ted, only a handful of states allow doctors to help terminally ill people die, but the patients have to be residents for at least six months.
The only place a terminally ill person can go to get a doctor to help them die is Switzerland, Barbara told Ted. So her husband, who was 75, had traveled to Zurich where — for $13,000 — a doctor prescribed him a lethal injection. As her husband drifted away, Barbara held his hand.
Ted didn’t have enough money to eat at Applebee’s. If he had a gun, he could shoot himself. If he had a helium tank and a hood, he could plan his last breath. His best legal option in Florida, Barbara told him, was to stop eating and drinking.
She gave him a DVD of a doctor who had done just that. “Your organs start to fail,” Barbara said. In 10 days to two weeks, you die of dehydration. It takes a lot of willpower, she told him, to starve yourself.
“I don’t like having to call the shot to kill myself,” Ted said. “But when I see my wife going through too much, I’ll know.”
He said he wished a doctor could give him a shot, or a pill, so he could just drift away. “But if I can’t do that,” he said, “the way I’m going to do it is to starve.”
For the first time in forever, Ted fell silent.
Barbara stood beside him, watching the mirrored balls sprinkle squares of light over the urn.
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ed couldn’t let go. While Barbara and Carolyn went into the kitchen to get tea, he lingered on the lanai, trying to balance the mobile for maximum movement. His arms were so weak, he could reach up for only moments at a time.
“He hates living like this, so he keeps reverting to the past,” Carolyn told Barbara. “I keep trying to bring him back to now, so we can figure things out and enjoy each other. Oh, we’ve had some drag-outs lately. All his anger is directed at me. I keep asking him, ‘You need some help getting to the grave? I can help get you there.’ ”
Barbara wrapped her arm around Carolyn’s shoulder. “That’s tough,” she said. “You make sure you take care of you, too.”
Just then, they heard banging, Ted pounding on the glass door. He didn’t have the strength to slide it open.
“Now, where would you like to sit to talk about your living will?” Barbara asked as he collapsed into a chair.
“I’d rather talk about my sparkling personality,” said Ted, launching into stories about his prowess at billiards, how well he played the flute, an ocelot cat he once tamed.
When he had to spit, Barbara squeezed in a question: “You’re familiar with what a living will is, right?”
Ted put on his glasses to look at the paper Barbara slid toward him. “Generally, whatever I have, she gets, right?”
Barbara shook her head. “No. A living will is different from a financial will.”
“I don’t have any finances,” Ted broke in, changing the subject again. “Just that old trailer and my Lincoln. I’m trying to sell the Lincoln.”
The doctor explained “do not resuscitate” orders, said they should file them with their doctor, post copies on the refrigerator. She helped them navigate a checklist of medical wishes.
“Okay, this is the part where you say whether you want your life to be prolonged at the end,” she told Ted. “If you don’t, check here: It’s my wish that I would be permitted to die naturally with medications to provide comfort or to alleviate pain.”
Ted grinned at her. “At the end, the only thing I’d want is an opium hookah pipe.”
f you knew you had one year left to live, what would you do? Reunite with the son you hadn’t talked to in 30 years? Meet your grandkids? Take your wife to the beach one last time?
Ted wouldn’t do any of those things.
In his last months, he railed at a God he said he didn’t believe in, called B.S. on the whole idea of an ever after. When his brother-in-law visited in a last-ditch effort to save Ted’s soul, Ted threw him out of his trailer.
Still, he thought, there had to be something more than just an end. Nine months after his diagnosis, he kept pondering, searching. Finally, he knew what he had to do. “She’s the only one who has the answers. The only one I can believe!” he told his wife.
In shaky cursive, he wrote a list of questions for television’s “Long Island Medium.” He wanted her to interview the dead:
1. Where are you? Describe your surroundings.
2. Can you travel? How? Are you stuck where you’re at?
3. Is there a heaven or hell?
4. If you have cremation, is that a good thing to do?
5. Is there a God? Have you seen him?
6. Can you find people, old friends and family?
7. Is there anything to worry about where you’re at? What?
8. Are you able to want something and get it?
9. Are there rules about getting in touch with people who are alive?
10. Who sets the rules, if there are any? What are they?
11. Is there sickness? Do you have to die again?
12. What about reincarnation?
13. What’s an average day and night? What do you do with yourself?
14. Is there shopping? Should I bring a credit card?
15. If you can’t ask questions to the departed, why not?
“I’ll have no peace of mind until I ask the medium,” he told his wife.
But he never tried to contact her.
Or his son.
Carolyn kept asking, didn’t he want to at least talk to Teddy, maybe connect with his grandchildren, whose names he didn’t know?
But Ted was defiant. “That boy could have been a world-class golfer! He could have made millions! But he was more interested in his penis — and that cheerleader who tricked him into getting her pregnant. I told him she was bad news!” Ted said. “He went off and married her anyway!”
He never forgave his only child.
“I tried calling once,” he said. “His wife, that bitch, hung up on me.”
Ted refused to make a bucket list. Said he had done everything he wanted to do. But the weaker he got, the more he seemed to want to hold on.
Ted kept telling Carolyn he had just come up with “the next great idea! Creative thinking! This will change the world!”
First, it was selling his 1972 Lincoln. He couldn’t open the heavy doors anymore, much less drive it. Figured he could get $10,000 for it, easy. “A nice little nest egg for Carolyn.”
Then, it was making one last sculpture. He’d always meant to build a soaring, steel eagle that looked like a plane. He could sell it to the Ocala airport for $500,000, at least. But he could no longer lift the blowtorch.
Maybe he could write a series of etiquette books for uncouth children. He sure knew plenty of those!
Or design travel posters. He still had lots of friends in San Francisco!
Eventually, he decided to write a political manifesto that would fix this entire ignorant nation. “I’d very much like to leave some advice to the people,” said Ted, who hadn’t voted since Kennedy was killed.
He scrawled his ideas on five pages of a spiral notebook, in cramped, almost illegible cursive. He wanted newspapers to print them:
“All the government workers think they are Rock Stars and very important… They have been filling their pockets like pigs at a trough…”
“United States will no longer be the police to the world. Any country that needs help to protect themselves can hire the French Foreign Legion.”
Cut the federal workforce. Fine the corrupt banks. Close the borders.
Carolyn just wanted to see the ocean with her husband one last time. She and Ted could drive to Daytona in two hours. It had been eight years since they had smelled saltwater.
“Okay, okay,” he kept waving her off. “I just gotta get this thing done… ”
May
The steps to their front door were too steep, his legs too rickety. So Ted mostly kept inside, propped on pillows in his leather armchair, the old television blaring HGTV.
He and Carolyn used to love watching the Food Network. All those extravagant dishes. But since Ted had so much trouble swallowing now, they stuck to shows about handsome contractors making old, crumbling houses beautiful again.
Ted was down to 91 pounds. Instead of starving himself, he kept trying everything to get food down. He even went to a doctor to have his throat stretched — four times. “I’m very much alive,” he kept saying. “Ideas are spinning like mobiles in my mind.”
He longed for sushi, stinky cheese, Champagne. Instead, Carolyn peeled tomatoes, cut the crusts off pot pies. It took him almost two hours to choke down a few bites.
When a friend came to visit and brought perfect rib eyes, Carolyn marinated the steaks for hours, trying to get them tender enough for Ted. He took a small bite, let it linger on his tongue, chewed and chewed, enjoying the sensation as much as the taste.
Then he had to spit it out.
June
By the start of summer, Ted’s bird arms couldn’t push hard enough to lift his skeletal body. “You need a seat that can help,” Barbara, the doctor, told him. But chair lifts cost $900, which she knew he couldn’t afford. So she bought him one.
“I’ll pay you back,” he told her. “As soon as I sell that Lincoln.”
Ted and Carolyn had drained their savings, maxed out their credit cards. He had no life insurance. They had bought their single-wide for $11,000 but still owed more than $500 a month for lot fees and utilities. Their income from Social Security didn’t cover the basic bills.
Carolyn wouldn’t be able to afford a coffin for Ted, or even cremation. He looked into donating his body to science so she wouldn’t have to pay, but he never filled out the forms. Instead of helping, he kept pressuring her.
“I don’t want to be thrown in a field somewhere with all kinds of paupers and troubled souls,” he told her. “If there is a hereafter, you’re not going to find anyone in a place like that who wants to go ride the merry-go-round.”
July
He should be dead by now. A year had gone by.
Though he couldn’t sleep or swallow ice cream, he kept telling Carolyn, “I flatly refuse to bow down to this thing.”
Carolyn helped him shower. Safety pinned the waists of his baggy gym shorts. Sat beside him while the Property Brothers prattled on TV.
It took him so long to eat that his food would grow cold and he’d yell at her to reheat it. He never said thank you.
They seldom slept together any more. Ted turned in early, tossed in pain and awoke before dawn. Carolyn stayed up late, savored the silence, searched the Internet for a cure for Ted.
When she got discouraged, she played solitaire and tried to remember the good times. Those drives down the California coast, that winery they’d visited. The smutty novel he’d written, the orchids he used to grow. She knew he didn’t mean to take his frustrations out on her. But she was getting tired of being his nurse, maid, cook and punching bag.
In 41 years of marriage, the longest they had been apart had been three months, when Ted went to Hawaii to see about opening a gallery.
Carolyn wasn’t sure what she would do without him.
Or how much longer she could keep him at home.
August
After California became the fifth state in the country to allow physician aid in dying, Ted cut an article out of the newspaper.
A 41-year-old woman in San Diego who also had ALS had thrown her own “Death Party.” She had invited all her friends, said her good-byes, then gone to sleep with a handful of pills — in her own bed.
Just two decades earlier, Dr. Jack Kevorkian had served eight years in prison for helping a patient with the same disease end his life.
“They do it for pets, why not for people?” Ted asked Carolyn. “Hey, I still know plenty of people in California. Maybe I can find someone to get it for me on the black market.”
“We can’t afford it, honey,” Carolyn said.
“I’m running out of patience,” he fumed. But even if he could have gotten those pills, he admitted, he wouldn’t take them. Not yet. He kept saying, “I still have so much to do.”
In states where terminally ill patients have access to life-ending drugs, many hold on to them just for the control they bring. In Oregon, where a Death with Dignity Act took effect 18 years ago, state figures show 1,545 people have gotten end-of-life prescriptions.
A third never took the medication.
September
On a bright, breezy afternoon in early fall, the old sculptor got the last sign. But he ignored it.
He was sitting in his studio, sipping cold coffee, smoking a cigarette Carolyn had to roll for him, listening to a cassette play Miles Davis’ Sketches of Spain.
Above him, seven wooden cherubs floated on thin wires.
Carolyn had gone to Goodwill, splurged on a $2 box of Christmas ornaments so Ted could make one last mobile. He had arranged each angel playing an instrument. Carolyn had tied all the knots. “Gabriel and his rock band,” Ted called it. “Singing me home.”
That afternoon, he had some more questions for Barbara: “Why am I still alive? Why am I dying? What if I’m not really dying?”
Barbara took Ted’s frail hands in hers. “You never know, Ted,” she said. “Stephen Hawking has lived with ALS for 53 years.”
Ted winced. “I wouldn’t want to live like that,” he said.
But he was falling more often. Berating his wife, mad that he needed her, angry she couldn’t anticipate his needs.
That afternoon, Carolyn tried to tell Barbara about a local art show. But Ted wanted to talk about when he raced cars. “You are such a Chatty Kathy,” he admonished his wife. Then he turned to his guest. “She never stops talking.”
Carolyn hung her head and said, “Okay, Ted.”
“Jesus, God, let me finish what I was going to say,” he growled. “Did you even get the Jell-O done?”
Ted might not have noticed, because he didn’t always listen. But that afternoon, he crossed his last line for determining whether life was worth living.
He told Barbara, “I haven’t gotten to the point yet where I’m really a burden.”
From the corner of the carport, Carolyn said softly, “You’re already a burden.”
That night, Carolyn cut the meat off a boiled chicken thigh and pulled it into tiny pieces. She helped Ted brush his teeth, eased him into bed and fluffed piles of pillows beneath his aching body. Then she pulled up a soft blanket and kissed his cold forehead.
“Good night,” she cooed. “Sleep tight. Don’t bite the bed bugs.”
In the morning, when he woke before her, Ted wrote a note. “To Carolyn, my wife, she has always let me be me, and filled my soul with kindness … The gods have smiled on me. Prince Vinegar has spoken.”
October
For nine hours, Ted lay on the floor, wailing with each breath. His head was bleeding. His right arm was bruised. When he coughed, his broken body curled with pain.
He had been trying to take his dishes to the sink that evening when he slipped in the kitchen, hit his forehead on the table and crumbled onto the linoleum. Carolyn, who had fallen asleep in her chair, awoke to him shrieking.
She couldn’t move him. Couldn’t make him comfortable or calm him. “Don’t call 911!” he kept shrieking. “Don’t you dare!” He didn’t want to go to the hospital. Didn’t want to die in some nursing home.
Carolyn called her neighbor. They tried to put a blanket beneath Ted and slide him into the living room, onto the carpet, where they thought he would be more comfortable. But he felt like his bones were being pulled apart. “He was screaming at me like I was stupid,” Carolyn said. “Just being so awful and evil.”
Finally, about 4:30 a.m., Carolyn called the paramedics. When they got there, Ted was so violent, they wanted to call the police. Carolyn talked him down enough for them to get him into the ambulance.
Then she collapsed on the couch, her head and heart throbbing.
At Ocala Regional Medical Center, doctors determined Ted had a hairline fracture in his left hip and pelvis. They worried about a brain bleed. Ted kept trying to crawl out of bed. He kept saying, “I have to go home.”
Barbara came to visit, convinced him to call a hospice. If he wanted to go home, his wife would need help. That afternoon, when a transport brought him back to his trailer, Ted told the driver, “Take care of me or I will kill you!”
Inside, workers were setting up a hospital bed in front of the TV. “I’ve been analyzing the damage. I’ll probably need at least two more operations,” he told his wife. “Right now, I’m a burden. But it’s still early.”
Carolyn spread strawberry jam onto a croissant, slid a straw into a bottle of Muscle Milk, put a tray in Ted’s lap. He hadn’t eaten in two days. But he wanted to talk about the good times: Armani suits. Alligator shoes. Drinking “the finest port wine.”
He started hallucinating that he was standing on a precipice. “Where am I?” he kept asking. “If I step off this ledge, where am I going to go?”
All night he kept trying to get out of bed, insisting he was going outside to smoke. Carolyn struggled to hold him down, even brought him a cigarette and let him light up inside. Still, Ted was frantic, pushing her and screaming, “Let me go!”
Just before daybreak, Carolyn had to admit: She no longer could handle him.
She walked into the kitchen, where she could still see Ted but he couldn’t hear her, and did what he had forbidden her to do: She called hospice to come get him. “Please,” she said. “I need help.”
When a team of workers came to carry Ted to a home called Sylvia’s House, he stopped fighting. He seemed to know, Carolyn said, that it was time. “Lock the door!” he called to her. “Take care of yourself!”
She promised, “I’ll be there soon.”
hen she got the call a few hours later, her first thought was regret: She hadn’t been there to hold him. Her second was gratitude: He hadn’t lingered in hospice; he wouldn’t suffer anymore.
Then Carolyn felt something else, just an inkling of something that made her ashamed: relief.
Now that she didn’t have to hurry to see him, she let herself sink into bed, and for the first time in months, she slept through the night.
The year had taken a toll on her, too. She had lost too much weight watching her husband slip away. She had lost so much strength trying to help him stand and shower. As Ted’s frustration had grown, she had fallen silent and withered under his wrath.
She had tried to keep him happy, fed. She even had surrendered the remote control. For so long, everything she had thought, worried about or done had been for her husband.
Ted always had said he didn’t want that, wouldn’t put her through such an ordeal. But he had. Not out of selfishness but because no matter how strong your convictions are to do what you think is right, it can be even harder to let go.
In the end, Ted didn’t have to choose. The disease did that for him.
That morning, as Carolyn thought back on their final time together, she shook her head, smiling through tears. Now that she had time to process everything, she could see it: Ted had been so determined to control his death. But what he had really wanted was to keep living.
“He was in such pain for so long. But he tried so hard to hold on,” Carolyn said. “Oh, he was so brave.”
The next time she saw her husband was at the funeral home, inside a cardboard box.
“Oh, honey, you’re free now,” she told him, stroking his sunken cheek. “I don’t know where you are, or if you can hear me, but I hope to get to be with you some day.”
She charged his cremation to a new credit card and went back to their trailer, to a porch full of paper cranes, a political manifesto and the old Lincoln, still in the driveway.
That night, she slumped into Ted’s chair and turned the TV back to the Food Network.
Around her, his mobiles kept spinning, casting shadows on the trailer walls.
Times researcher Caryn Baird contributed to this report. Designed by Lyra Solochek and Lauren Flannery. Contact Lane DeGregory at [email protected]. Follow @LaneDeGregory. Contact Eve Edelheit at [email protected]. Follow @eve_edelheit.