“Well, that would be me,” Sam said. “And you have yet to convince me that lethal drugs shouldn’t be allowed.”
“Right,” Michelle said. “At first glance, your argument makes sense. Who better to make this decision than the person suffering from the condition? There’s no question your perception of quality of life is going to have to change. But your brain is still sharp as ever, and technology has come a long way.
“You can still read, write, and share your ideas with others. You can still watch a baseball game, smell the fresh-cut spring grass, or taste a delicious meal. I’m not saying it’s going to be easy, but it is possible to find enjoyment in new things, or a new appreciation for what you already know. There’s a danger we all face if we allow the lives of disabled people to be viewed as not worth living.”
Sam scoffed. “So now I have to be the poster boy for everybody else?”
“Not at all,” Michelle said. “But I am asking you to give it more time. See if your perspective about quality of life changes. If you won’t do it for yourself, then do it for Julie.”
Julie set her hand on Sam’s shoulder. She had not thought she had a single tear left inside her, but that familiar lump came back to her throat as her eyes watered.
“Give it time,” Julie said. “Please, Sam, for us. Let’s give it more time. Let’s put our energy on living, not dying.”
Sam motioned for Julie to cap his tube. Once he could speak more easily, he stayed silent long enough for the mood in the room to turn even more uncomfortable.
“What’s your deal with this, Michelle?” Sam eventually asked. “Why do you care so much?” His voice had turned soft, and his eyes were heavy.
It was obvious to Julie that this conversation had taken an enormous physical and emotional toll on him. It had on her, as well.
“You ask a fair question of me,” Michelle said. “And it’s a story I think you may be able to relate to. Do you want to hear it?”
“Last I checked, I’m not going anywhere.”
Michelle strained to smile. “We have to go back in time a bit, to my first husband. I was thirty-nine. I’m fifty now. Happily remarried to a doctor who works at this hospital, in fact. But back then I was happily married to a man I met in college—a man I thought I’d be with forever.”
“I thought I’d be getting married to Julie and buying a new condo in Cambridge. Now I can’t wipe my own ass. Funny how life throws us curveballs like that.”
Michelle shrugged off Sam’s aggression. Her eyes misted with memories. “Our curveball was a brain tumor. A grade IV astrocytoma, to be specific. He tried all the treatments—chemo, radiation, even surgery. Nothing helped alleviate his symptoms or his suffering. He was dying in the most horrible way. Seizures, nausea, blinding headaches, memory loss like an Alzheimer’s patient. I didn’t know what it was like to watch someone I love suffer so much, but I can relate to Julie’s pain because the experience was utterly excruciating.”
“Then you should be able to understand why I want to die.”
“I did and I do,” Michelle said. “I understood so well, in fact, that I moved my husband and teenage son across the country to Oregon, where he could legally get the prescription you’re wanting. And he got it, and he died. This was completely against my upbringing, my religion, but he needed my help and support.”
Sam returned a grim smile, but Julie was glad to see any smile from him.
“You’re making my case just fine,” he said.
“But it wasn’t fine, Sam. We’re all going to die, no debating that. What I learned from my experience is that death can bring more problems if you do something to speed it up. My husband didn’t die of a brain tumor. He died from the pills he ingested, the pills I helped him obtain. I thought the burden was mine and mine alone, but it turned out my son, Andrew, felt like he had a hand in killing his father. He didn’t share his feeling with me until after his dad was gone, but later he expressed his guilt for not doing more to stop it from happening.
“Andrew wasn’t sleeping. Started drinking, smoking, his grades went from As to Ds. He sank into a depression. I tried everything. Pills. Doctors. We eventually moved out of Oregon and settled in Massachusetts to get as far from the place where his father died as possible. It didn’t help. He carried the guilt with him all the way across the country, and it followed him like a shadow.”
Michelle’s sadness was pronounced. “I knew when I got home and the house was quiet that something horrible had happened. I knew when I called Andrew’s name and he didn’t answer. I just knew.”
Michelle closed her reddened eyes and put a hand to her mouth, head lowered. She stayed that way until her composure returned.
“I found him hanging in his closet. He was gone. He took his own life. He took his life because I took his father’s. And that’s when I knew that it wasn’t just about my husband and his freedom of choice. It was about all the lives connected to him, including my son’s. So I changed my tune about death with dignity and I turned my focus, my full passion, to preserving life at all cost. Death is coming for us all, Sam. And if you push Julie hard enough, she may just crack. She may move you to Oregon, or Vermont, or some state where you can legally order your own death. And you’ll be gone, and Julie will live with that decision for the rest of her days.”
Sam eventually broke the lengthy silence that followed. “I’m sorry for your loss, Michelle. You have my deepest sympathy. You’ve given me a lot to think about.”
Michelle smiled. “Then I’ve done my job,” she said.
In the protracted silence that followed, Julie sensed that anything she chose to say would be wrong. Except for the words, “I’m sorry,” which Julie spoke in a soft voice, directed at Michelle.
Julie bent down and gave Sam a light peck on his forehead. As she lowered her head, Julie could see a few red dots marking the lower portion of Sam’s neck. She stood, kissed Sam’s lips, and said she loved him. Then she hugged him and hugged Michelle. For a moment the mood lightened.
Then, being the doctor she was, Julie shined her penlight on those skin abrasions. “Well, in addition to that prescription for Prozac, I’m going to get you another for an antihistamine,” she said.
Sam returned a puzzled look. “Why is that?”
“From the looks of it, you’re about to break out in hives.”
“Hives? Oh, crap. Well, I guess when it rains it pours,” he said.
Julie laughed because she could not stand to cry anymore.
CHAPTER 18
ONE WEEK LATER …
Julie finished a busy morning in the ICU, plus extra time on the phone with an obstinate agent from an insurance company. Goodness, weren’t they all? This one refused to pay for Xolair because the patient had “asthma-like symptoms,” not pure asthma. It did not seem to matter to her one bit that Julie’s patient had failed standard therapy with prednisone. What mattered was that prednisone cost three dollars a month, and Xolair could run anywhere from five hundred to two grand, depending on the dose prescribed. It irked Julie to no end that someone in a cubicle without an M.D. was reviewing checkboxes to see if all the criteria had been met.
“Has the patient been on a moderate dose of inhaled corticosteroids plus long-acting beta-agonists for three months?”
Come on now, Julie wanted to scream into the phone. The patient is here, right now, and he’s having a hell of a time taking in a good breath, not to mention he’s had four emergency room visits in the last month. Julie knew that Xolair would make a difference. The patient had an immunoglobulin E level through the roof, the exact area Xolair worked on.
“Is the patient’s diurnal variation in peak expiratory flow greater than thirty percent?”
Do you even understand what that means? Julie wanted to say. She controlled herself. This was a game, and she was adept at playing. Her goal was to get the best treatment possible for her patients, while the insurance companies she battled wanted the least expensive/best treatment possible.
By one o’clock she was ready to head to the rehab floor, where she would have lunch with Sam. For today’s feast, she had prepared a special meal at home with Trevor’s help: buttermilk fried chicken and homemade coleslaw. The past couple of weeks had been difficult ones for Sam, compounded by a terrible outbreak of hives. But Sam was out of the ICU, and had sort of made good on his promise. He only asked Julie to help him die every other day.
Over the course of many conversations, Sam repeatedly expressed dismay at Julie’s continued commitment to him and to building a life together. For a man used to giving of himself, he now felt like a burden to everyone. Often, Sam asked to be left alone. He confessed that Julie reminded him of all he had lost and would never get back.
Michelle insisted that “let me die” was a phase in the process. Indeed, Julie saw glimmers that proved her right. Sam had begun to sit in a wheelchair for a couple hours at a stretch before exhaustion forced him back into bed. Every day physical and occupational therapists stretched Sam’s body to the absolute limit, and he seemed able to withstand the ordeal. The work kept Sam’s muscles from atrophying completely, but did little to lift his spirits.
Sometimes during her lunch break, or after a shift, when Trevor was with Paul, Julie would climb into bed with Sam. Together they watched documentaries on YouTube detailing different stories of spinal injury and survival. For the most part, Julie found them life-affirming and deeply inspirational. Sam took it all in, and even asked a nurse to gather some information on assistive technologies. He was particularly interested in a computer that would allow him to type with his eyes. That was a positive sign, Julie decided. The speed at which cutting-edge communications technology was being blended with therapeutic and rehabilitative care was nothing short of astounding.
Close to the elevators, Julie picked up the pace and caught one going down. She was eager to play a song for Sam. Along with the cooler of lunch food, Julie had brought the iPod nano loaded with new music. She’d bought Sam the iPod a few weeks ago and downloaded a variety of music files from iTunes. Sam was not yet interested in listening to audiobooks; it took too much focus, he said.
Sometimes Julie would bring the iPod home and refresh it with more songs, organizing them into playlists for easier listening. Well, Trevor did the refreshing and playlist creation. It was his way of doing something nice for Sam. He was also much more adept with technology and was part of a computer programming club at school, The Bytes. Trevor had visions of MIT that did not yet jibe with his study habits, but his innate ability would take him places, Julie believed.
The iPod Trevor managed for Julie had a preponderance of jazz and blues, two of Sam’s favorite genres, and lots of classic rock. Today she had added a song from the band Weezer, a tune that held special significance for both of them.
It had been a gray fall afternoon, much like this one. Sam had lured Julie to his classroom with some excuse about car trouble. When she arrived, the classroom was empty, until one by one a procession of Sam’s students, silent as monks, filtered into the room and took up every available seat. Julie stood at the front of the class with a wary expression, unsure what to make of it all, and not getting any responses from the kids. The lengthy silence broke only when a student in the front row took out a pair of portable speakers and started to play “No One Else” by Weezer, a band Julie had discovered and adored while in medical school. One by one, in synchronized fashion, the kids held up cardboard signs with a letter neatly printed on each.
It took a minute for Julie to realize that the letters spelled out: “Julie I love you. Will you marry me?”
Sam had entered the classroom in a fine suit, holding a beautiful bouquet of white roses. His students had gone crazy, cheering and clapping as Sam went down on one knee to present Julie with a velvet jewel box.
Julie exited the elevator, wondering what impact the song might have on Sam’s mood. Would he snap at her, as he had on several recent occasions? Or would the memory warm him, as it did her?
On the way to Sam’s room, a voice broke out over the loudspeaker that stopped Julie midstride.
“Code blue, room 2206!”
That was Sam’s room. Julie raced down the hallway and turned the corner just in time to see two nurses rush into the room. When Julie got there, one nurse had already started CPR and two others were busy setting up the bedside monitor. The adjustable lamp over Sam’s bed illuminated his face, now disturbingly gray.
The nurses glanced up to see a look of alarm on Julie’s face.
“Quick, tell me what happened!”
“I was just coming in to sit him up and get ready for you to feed him lunch,” one nurse said. “He complained of feeling warm and light-headed. Then his eyes rolled back into his head and he became unresponsive. I couldn’t feel his pulse, so I called the code.”
The rapid response team, pushing various machines and a crash cart, burst into Sam’s room and took up their respective positions. Dr. Hayes, a tall, gangly New Yorker who was a board-certified physical medicine and rehabilitation specialist, rushed to Sam’s bedside.
Julie responded with startling vehemence. “I’ve got this!”
Dr. Hayes retreated a few steps, making room for Julie to take over.
“I’m sorry, Henry. I’m sorry,” Julie said to Dr. Hayes, finding a measure of calm she desperately needed. She directed her attention to a male resident. “Please take over compressions,” she said.
Intubation could wait. There was no lingering animosity. Dr. Hayes understood no one was more qualified to lead the charge to bring Sam back from the precipice of death than an ICU doctor. Julie, however, understood that Sam would want her to do nothing.
She glanced at the IV bags and at the urinary catheter snaking from beneath the sheets. Somewhere within, she wanted to give him the everlasting peace he had begged for. At the same time, she felt an intense need to force life back into the waxy stillness of Sam’s face.
“Okay, okay.” Julie snapped back into herself, feeling the tempest subside as her mind clicked into task mode. “What do we see on the monitor?”
“Ventricular tachycardia at two hundred, no pulse.”
“Charge to two hundred joules,” Julie said.
There was an agonizing silence as a nurse turned the dial on the automated external defibrillator to 200. Another nurse attached two defibrillation pads to the chest to insure that the electricity got delivered to the right place on the heart.
“Draw up forty units of vasopressin,” Julie ordered as she motioned a resident away from the bed. She pressed the charge button and immediately the hum of the machine grew louder, like a mosquito flying closer and closer to an eardrum.
“Step back from the bed,” Julie called out. “Everyone, all clear!”
“All clear,” most everyone repeated, indicating a go-ahead to shock.
“Ready?” Julie said. “Shock!”
Julie pushed the red button on the top of the defibrillator. A metallic thump sounded as two hundred joules of electricity shot through Sam’s chest and into the rest of his body. His paralyzed muscles did not respond to the jolt in the same manner as those of an able-bodied person. His body came off the bed just a little, but without the rigid arch that usually accompanied that much electricity.
“Any pulse?” Julie asked.
“No pulse,” a nurse said. “Monitor looks like v-fib.”
; Julie glanced at the monitor and confirmed the read was indeed ventricular fibrillation. The ventricles of Sam’s heart fibrillated, contracting in a rapid, unsynchronized way. The heart pumped little to no blood.
“Is the vasopressin ready? Give it now. Ready, charge to three hundred.” Julie’s voice was firm, but unagitated.
“Charging to three hundred joules,” a nurse announced.
The hum of the machine again increased in volume as the nurse recharged the defibrillator.
“Charging to three hundred, ready.”
“Clear!” Julie called out.
“All clear,” many repeated.
“Okay, shock!”
Julie depressed the red button, repeating the previous jolt. Sam’s body barely moved as a metallic thunk sounded like a distant thunderclap.
“Any pulse?” Julie asked. A feeling of dread hit so hard it was as if someone had put the paddles on her own chest.
“No pulse, Dr. Devereux,” a nurse announced. “He’s still in v-fib on the monitor.”
With alarm, Julie observed the jagged peaks and valleys of Sam’s telemetry readout. Ventricular rate two hundred beats a minute, atrial contractions not discernable, P waves notably absent. Grim as it appeared, Julie knew Sam still had a shockable rhythm. There was still a chance he could come back to her.
Julie began to order medications to be given through Sam’s intravenous lines. Epinephrine to help increase cardiac output, amiodarone to keep the heart beating normally, bicarbonate to counteract the lactic acid buildup, and even glucose, in case for some reason Sam’s blood sugar had dropped too low. This was followed closely by a 360-joule countershock.
“Yes! We got something,” a nurse announced with jubilation. “Monitor shows wide rhythm at forty-five. I can feel the femoral pulse, though it is weak and thready.”
Julie held in a breath and watched the monitor, half expecting the readout to return to v-fib status at any moment. For the time being, it appeared to hold steady.
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