“Well, it sucks for me.”
“Language, please.”
“It stinks,” Trevor said with some bite. “I can’t keep track of my stuff. I don’t even know when I’m supposed to be at Dad’s and when I’m supposed to be here.”
“This week has been hard on us all. It’ll get easier. I promise.”
“Yeah, but by then I’ll have failed my other courses.”
“Don’t be dramatic. We’ll deal with this English paper. Just take it easy on me right now. I’m going through an awful lot, and I need your support. Can I count on you?”
Trevor shrugged and said, “I guess.”
Winston came back into view, ball spinning. Trevor picked him up. “I should put him back.”
“When things get settled, we’ll look at the schedule with your dad. Maybe we can simplify it. I don’t know. And I’ll e-mail your teacher after dinner about the essay. Okay? Now go wash up.”
“Sounds good, Mom.”
Trevor and Winston headed off.
“Trevor?”
He turned back around.
“I love you,” she said.
“Love you too, Mom.”
No pause at all from Trevor, no need to collect his thoughts. It was how he felt about his mother. Julie’s heart swelled. She had made a vow after Sam’s accident to say those three simple words to her son every chance she got.
CHAPTER 16
“Kill me, Julie. Please help me die.”
Sam’s anguished plea tore at Julie’s heart. Fresh flowers filled the stark ICU cubicle with bright colors that failed to offset Sam’s dark mood. He slept most of the day away, with Julie at his bedside every moment she got.
“You don’t mean it. It’s hard now, but it will get better.” Julie entwined her delicate fingers around Sam’s and gave his hand a slight squeeze.
Sam could not squeeze back. Nor could he touch Julie’s face, or stand, or run, or feed himself, or do any of the countless things he used to do before the accident.
The gentle rise and fall of Sam’s chest, the passing of his tongue across dried lips, the blinking of his eyes were the only indications he could move his body at all. The face that had been so full of life was sunken, his skin pulled close to the bone, dark circles marking the pain in his eyes. September became October, and in the weeks since the accident, Sam seemed to have aged a decade. With his beard shaved, Julie could better see how his face had lost its luster.
This was the new normal. Today was just another day in Sam’s ongoing care in the ICU. It had been sixteen days since Sam fully regained consciousness and there were no major crises, no life-or-death medical procedures. All he had done on this day and the day before was to lie in his hospital bed, hooked to wires and tubes like a human marionette.
“Please, Julie. I can’t live like this.”
How many times had he asked to die? Julie had lost count, but it had started the moment Sam could speak again. Nothing Julie said could shake his despair. She understood it, felt it in her core.
“I’m sorry, baby,” she said. “I’m so sorry for what you’re going through. I’ve called someone who can help.”
“Nobody can help me, but you. You’ve fought for death with dignity for years, now fight for me.” Sam’s voice was a hiss of air, a faint echo of his former self.
Julie shut her eyes to battle back another wave of distress. “It will get better. You have to believe it will.”
“You’re a hypocrite.”
His words stung, but Julie understood his need to make it hurt.
“No, it’s different for you. There’s a lot of evidence that quality of life for—for people with your type of injury is about support and reintegration into the community.”
“My injury,” Sam said, the contempt almost palpable. “I’m quadriplegic and that’s what I am going to be for the rest of my life. I don’t want this. I don’t. I’m going to live out my days helpless in a hospital of some sort, and you know it. You know it and you have to help me.” Sam’s body might have been broken, but his mind was crisp and working strategically.
Julie had made a career out of keeping people alive who were on the edge of death. The torment and pain she’d observed over many years had altered her beliefs about administering care to the supremely sick. She always did her job to the best of her ability, but welcomed the day when caring for patients would mean having the option to end their suffering in a dignified way.
Sam wanted to die. Should he have that right? Was Julie being a hypocrite? It was true her beliefs were easier to maintain when she had no deeply personal connection to the patient wishing to die.
“I believe you can make a life,” Julie said, her voice not so convincing. “We can make a life together, and I want to be the one to help us do that. I know it can be a good life, too.”
“You believe that as much as you believe Nancy Cruzan should have been kept alive.”
“No. Nancy had no life whatsoever. It’s different.”
In one of her prepared talks about death with dignity, Julie had referred to the case of Nancy Beth Cruzan, who had been involved in an automobile accident that left her in a persistent vegetative state. Citing the due process clause of the fourteenth amendment, Nancy’s parents went to court to get their daughter’s feeding tube removed. In a five-to-four decision, the Missouri Supreme Court had ruled that individuals had the right to refuse medical treatment as long as they were competent to exercise that right. Without any clear and convincing evidence that Nancy Cruzan desired her treatment to be withdrawn, the tube remained in place. Nancy’s parents eventually proved to the court’s satisfaction that their daughter would not wish to be on life support. Nancy’s feeding tube was eventually removed, and soon after she died. The case gave rise to the broad adoption of advance life directives.
Was it so different for Sam? As much as Julie wanted to believe the two cases were unalike, at the core both were about quality of life. Sam had no mobility. He was completely dependent on others for everything, and would remain that way, most likely, for the remainder of his life. To him, this was no life at all. He might as well be in a vegetative state.
Should Sam have the same right as Nancy Cruzan?
He was certainly of sound mind, and there was no mistaking his desire. But his vitals were improving, and with time his mental state might change as well. If Julie had learned anything from her years in the ICU, it was that people were deeply resilient and could adapt to almost any situation.
Julie glanced at the waves running across the screen in the six divided sections of the telemetry monitor above Sam’s bed. The green EKG lead recorded a nice steady sinus rhythm, an indication of a healthy heart trapped inside a broken body. Sam could be fed, hydrated, and kept alive day after day, year after year. What he could not do was kill himself.
The pulse oximeter reading, a blue sinusoidal wave that mirrored the heart rate, showed Sam’s oxygen saturation at 99 percent. His lungs, just like his heart, were functioning fine and allowed for breathing, but with help, probably forever, because his spinal injury was complete—no motor or sensory function in the lowest sacral segment.
Help came in the form of a curved tube affixed to Sam’s neck by a plate called a flange. The tube inserted into Sam’s tracheostomy stoma—a hole made in his neck and windpipe—was permanent, but far better than the alternative of long-term ventilation. The procedure provided Sam with an open and clear airway, but made speech more difficult because air no longer passed through the vocal folds that produce sound. To facilitate speech, Julie had to intermittently block the tube with the palm of her hand to seal air inside the throat until enough air accumulated to allow Sam to talk again.
Eating was easier than speaking. Despite the tube, Sam could enjoy solid foods now, as much as he could enjoy anything. He’d had a steak dinner not long ago, specially marinated by the kitchen staff, but the meal brought him no joy.
The arterial section of the telemetry monitor, colored red, meas
ured heartbeat to blood pressure. Sam was stable here as well, a solid ninety-five over fifty-eight. His meds would change over time, but he would always need a lot of them to be kept alive.
“You know how to kill me so you won’t get caught.”
“I don’t, Sam. Honest. They test for everything. And even if I could, I would never. I couldn’t.”
Sam tried to speak, but no sound came out. Julie capped the tube with her palm and waited a few moments while Sam labored to breathe through his nose and mouth.
“The best care should be made available to every patient,” Sam said in a raspy voice, “but a patient deserves the right to hasten death to avoid inhumane suffering or escape from a life turned unbearable.”
“Don’t throw my own words back at me,” Julie said.
“Then … you … are … a liar…” Sam was having trouble with his speech again.
Julie once more had to cap the tube, but was afraid he’d utter more hurtful words.
“Things may change in a few months,” Julie said. “There have been cases.”
“Don’t … don’t give me false hope. You understand the films better than I do, and I got a perfectly clear picture of the rest of my life.”
Julie had a picture, too. It was indeed bleak. Sam would eventually be discharged to the rehab floor at White Memorial, where he could easily spend the better part of a year. And what would that year look like? In the mornings Julie would visit with him, feed him breakfast before the start of her shift. He would then have a sponge bath, and if he did not move his bowels in a diaper, he would most likely endure a second cleaning later on. Then it would be off to physical therapy where some young, able-bodied person would move Sam’s limbs so that the muscles did not atrophy completely. If her schedule allowed, Julie could feed Sam lunch before the occupational therapists would try to teach him to do with his mouth what he had done with his hands.
His days would be an endless grind.
“I know it seems hopeless right now,” Julie said as she caressed Sam’s face. “But you have to believe me, because there is hope for better tomorrows.”
“I resent your optimism.”
Julie did not respond. She glanced down at her watch. The visitor she had invited would be arriving here any minute.
“I understand,” Julie said. “And I’m about to give you another reason to resent me.”
At that moment, the door to Sam’s cubicle opened. A thin woman entered, not tall, barely five foot four, with a pretty face, thick dark hair down to her shoulders, and large brown eyes full of kindness. She wore a beige cardigan sweater and black slacks, and some sort of ID hung from a lanyard around her neck. She acted unhurried, and by that alone Sam could have guessed she was not a doctor here. Her lithe body and graceful movements suggested past training as a ballet dancer.
“Hello, Sam, my name is Michelle Stevenson. Julie asked me to come see you. Is now a good time? I can come back later if you’d prefer.” She spoke clearly, somehow striking the right balance between a professional tone and something more intimate.
Sam directed his frosty gaze up at the ceiling. Julie gently lifted Sam’s head and readjusted the thin, firm pillows to give him a better look at this stranger.
“Why are you here?” Sam asked.
“I’m with an organization called Very Much Alive. And I’m here to convince you that there is a good quality of life for quadriplegics. Now, I know you disagree,” Michelle said, preempting Sam’s rebuttal, “but all I ask is your willingness to listen, and it will cost only your time. If I’m successful, and I believe I will be, I’ll give something back to you that’s very precious indeed.”
“And that is?”
“Your desire to live.”
CHAPTER 17
Julie had known about Very Much Alive before she contacted the organization. In fact, she was probably on their list of least favorite doctors. In disability rights circles, Very Much Alive was considered one of the most formidable. The group organized demonstrations, was active on the lecture circuit, wrote peer-reviewed papers for many respected journals, and engaged in constant battle online, in the media, and in the halls of Congress with organizations such as Humane Choices, which advocated for death with dignity.
VMA had some of the best counselors in the business, who were expert at convincing others to change their views, including several patients who had wanted to die and now were spokespeople for Very Much Alive. Their stories were displayed prominently on the organization’s website with pull quotes, videos, and essays explaining how they came to their change of heart. Hopeful that VMA could reach Sam, Julie had made the call.
Sam’s eyes narrowed into slits, his teeth clenched, and the veins on his neck bulged just as they had the day Julie stuck a needle in his chest.
“You should … have told me … she was coming.” Sam labored to get out the words.
Julie capped his tube with her palm to fill his throat up with air again.
“In fairness to Julie, I’m the one who suggested we keep my visit here a secret. From what she told me about your situation, I was fairly certain you would have refused to see me. At least now I can plead my case, and all it’s going to cost is a few minutes of your time.”
“Please, darling. Five minutes. Hear her out.”
Sam turned his head away from Julie. He would have gotten out of bed and left the room, if only he could.
“Julie told me about the accident,” Michelle said, “and I want you to know how truly sorry I am for what’s happened to you.”
“Not as sorry as I am,” Sam said.
Michelle cast her glance to the floor and nodded in agreement.
“What is it you want from me?” Sam asked.
“I’ll get right to it. My organization opposes physician-assisted suicide. We view it as a lethal form of discrimination against disabled people.”
“What you call lethal discrimination, I call mercy,” Sam said.
“With time, your thoughts and feelings may change. We’ve seen it with other people in circumstances similar to yours.”
Sam nodded to Julie in a way that told her to cap his tube.
“There are drugs you can take that can induce temporary paralysis,” he said. “Why don’t you try living like me for a while and see how you like it.”
Julie glanced at Michelle and had no trouble reading the woman’s thoughts. This was going to be an uphill battle all the way.
“There’s no question you’re suffering,” Michelle said. “But is it unbearable? Who is the judge?”
“On that point, I think I am,” Sam said flatly.
“No. Your physician would actually become the ultimate judge, because he or she would have to take the steps to bring about your death. Right now, you might not be in the best place to guide that thinking.”
This was one area where Julie had gone head on with groups like Very Much Alive. Suffering was considered to be part of the human condition, as groups opposed to mercy killing often argued. Medicine, Julie said in her speech, was nothing more than a manufactured way to alleviate a natural process. Her argument went that mercy killing, as a means to end suffering, should therefore be treated as viable medicine. In her seminars, Julie asked, was it fair to force people to exist, often in agony, just for the sake of existing?
Sam eyed Michelle skeptically. “Are you suggesting I’m not rational, or that my judgment is somehow impaired? Want to quiz me on American history? I’ll get a hundred. Guaranteed. Or better yet, I’ll quiz you.”
Michelle was well practiced at dealing with adversaries. “I’m sure you know our country’s history better than I do,” she said, a trace of a smile curving her full lips. “But that has no bearing on the fact that assisted suicide is not the answer.”
Michelle had an ethereal quality, something inherently light, almost fairylike. She had high cheekbones and a slightly angular face. From their conversations, Julie had learned that Michelle had been married twice, and was close to fifty, but sh
e looked easily a decade younger. She radiated warmth, and Julie cast aside any doubts she’d had about this meeting. If anyone could open Sam’s mind to new possibilities, it was Michelle.
“Pardon me if I sound rude here, Michelle,” Sam said, “but I think that I know best if my life is worth living.”
Uh-oh, Julie thought. Here we go.
“I’m not saying you don’t,” Michelle answered. “We live in a society that values physical ability. It’s completely understandable how your injury not only robbed you of your mobility, but of your dignity as well.”
“Thanks for getting it.”
Sam had never been sarcastic with Julie before, but the injury had changed much about him.
“At first blush, assisted suicide might seem like a good thing to have available,” Michelle went on. “But dig deeper and you’ll see the problems.”
Julie shrank a little from the look Michelle gave her. She obviously knew all about Julie’s papers and lectures advocating passage of death with dignity laws nationwide.
“It’s fear of living a disabled life that makes you want to die,” Michelle said. “It’s fear of the indignity, of not being able to get out of bed, or use the toilet on your own. But this is new for you. Over time, you’ll learn that needing help is not undignified, and that death is a far worse choice than assistance. Depression can be treated, Sam, but there’s no known cure for a lethal prescription.”
“Is this what you do for a living?” Sam asked. “Try and keep quads alive?”
His breathing had turned ragged. Julie gave him a drink of water, then capped his tube so that he’d be able to continue antagonizing Michelle.
“Not exactly,” Michelle said. “What we believe is that legalization of assisted suicide and euthanasia will lead to policies that discriminate against the disabled, poor, and underinsured. We want to protect people from doctors who tell patients they have six months to live when the prognosis of a shortened life expectancy is often wrong. And once society authorizes assisted suicide for the terminally ill, it’s inevitable the scope will increase to include those who cannot self-administer lethal drugs.”
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