“There are things we can do,” the doctor continued, waiting for the news to settle. “And there are several things you can do personally,” he followed. “This is going to be a battle,” he said. “We’ll fight it.”
“What exactly can we do?” Mara asked. “What kind of treatments are there?”
The doctor gave a sympathetic look and shook his head, as if it was a useless proposition.
“It’s more up to George, I’m afraid,” he said. “How his body reacts to the disease… It can come and go, good days and bad. It doesn’t have to take over your lives, at least not at first. But, everyone is different and everyone reacts in different ways. Just don’t think of this day as an ending. It’s the beginning of a new set of rules and a new lifestyle, one in which you can both still enjoy.”
George still had not spoken. Mara asked the questions for him that he didn’t want to ask, and the words barely came out of her mouth. She suddenly burst into tears when she tried to ask the question that she most feared.
“How long?” she asked. Her hand covered her mouth when she said it, and her eyes suddenly released a torrent of droplets. She felt ashamed for even asking.
The doctor took a deep breath, grabbed a box of tissues, and he walked to her. He held them out to her within reach. “There’s no way to know, Mara,” he said. “Everyone is truly different. Just try to stay positive. There is nothing better for George than a positive attitude and a kind friend.”
George was clutching her hand harder. She saw it in his eyes. He still had not spoken. Mara noticed the grip on her hand had tightened to the point she had to loosen it, and she placed her other hand over his to show her support.
“What exactly is wrong, doctor?” she asked, hoping to understand better what was happening. The doctor returned to his seat and leaned back with a pencil between his hands, rolling it between his long fingers.
“Well, George’s body is attacking its own nerve cells, and his own nervous system. ALS is an auto-immune disease, which means his own body is causing his muscles to shut down, fighting itself. Something like this can happen at almost any time in early adulthood, and we don’t know why. There are genetic tests underway, studies, indicator genes… but there is no cure. We can only try to manage it.”
“How?”
The doctor tilted his head. “Make sure George is comfortable. You may start to see a decline in his ability to do certain things. Unfortunately, George, in time, you may lose the ability to walk, and eat, among other things,” the doctor said. “You’ll learn to deal with any setbacks as you progress.” He hesitated to say more, taking another deep breath that seemed to contain the sympathy of a thousand other diagnoses he had made over the years. “I’m sorry,” he said.
Mara wiped a tear that had begun to work its way down George’s face for him. She continued to clutch his hand.
Questions became difficult to ask. The doctor started gathering pamphlets out of his desk drawers to hand to them. He walked and handed a handful of them to Mara.
“This never gets any easier… seeing this happen to good, happy, young people,” he said. “I’m always here and available if you need anything,” he said. “Stay hopeful, George. The power of the mind does more than you realize.”
They remained seated with the doctor standing over them. Mara was fumbling with an obvious question that had passed her by earlier.
“What about the mission, doctor?” she asked. “George has been selected for the Copernicus mission. We both were.”
The doctor looked at them with a curious stare. “Is that the mission to Jupiter?” he asked.
Mara nodded. “Europa, actually,” she said, correcting him.
“Well, Mara, I can’t speak for NASA, but I’d be remiss if I didn’t tell you I think this will preclude George from going,” he told her. “How long until you leave?”
Mara’s head was low as she tried to remember the schedule. “We are supposed to launch later this year,” she answered. “And we’ll be gone for five.”
The doctor took a deep breath and looked at George. “George, you need to speak to NASA about this, and be honest with them. I’m sure they will do for you what they can. But… my honest feeling is that in your condition you will likely be exempted from the mission. My recommendation would also be for you not to go. It’s going to take everything you have to fight this right here.”
George was shaking, and Mara wiped another tear from his face. He had already undergone the rigorous training and testing. Now he would be forced to back out, and for something he had no control over.
The anguish on his face was torture for Mara. There was a silent minute as they came to accept what they were hearing. Mara stood and George followed her.
“I’m here if you need me, and please see the front desk for your follow-up,” the doctor said.
Mara smiled and they left the room. They walked out of the clinic and down the long corridor, through the sliding doors at the vestibule, and out into a mid-day Summer sun. It glistened brightly upon them. “It was far too nice a day to have news like this,” Mara thought to herself.
They each lifted their hands to shield the sun as the glare beat down on them. The reflected light from the windshields of a hundred cars seemed to be collecting on them as they walked into the parking area.
The world had continued as if nothing had changed. There was still traffic on the freeway nearby. Birds were gathering near puddles of rainwater. An airplane made a faint noise above on approach to the nearby airport.
It was an unsettling feeling, to have one’s life upended so catastrophically, and see that the rest of the world could move on as if nothing was wrong. It was a feeling of insignificance. They were immobilized there, under the glare of the sun, uncertain how to begin their new life only steps outside the hospital.
They began to walk slowly to the car. Mara noticed the sounds weren’t right. She swore she heard a ringing sensation in her ears as the traffic and the birds around her felt muffled and unfamiliar.
“George, we’ll talk to them, ok?” she said. “This doesn’t mean you can’t go. Maybe we can set something up for you, make it workable. I could even take care of you up there.”
George was finally ready to speak now that he was out of the doctor’s office. “I already know that won’t happen,” he told her. “NASA won’t have someone that isn’t in peak condition on one of their missions,” he argued. “Besides, you know what happens if this flares up while I’m out there? I become a liability, a detriment to the crew, and a risk to the entire mission. I already know I’m not going,” he said.
Mara tried to get in front of him, to talk to him positively, but he dodged her and moved aside, not wanting to face her.
“You don’t know that, George,” she said as he walked by. “They selected you. You’ve already been through the training. Not letting you go will mean a delay in the schedule. Who knows if your alternate is even trained yet.”
“I’m sure he’s trained. It’s his lucky day. They’ll want to send him now instead of me.”
“We’ll make some calls. We can work this out,” she said. “We’ll call and let them know what’s going on.”
George said nothing as they got in the car. Mara instinctively walked to the driver’s side and pointed him to the passenger seat. They left for the apartment. “How to begin to break the news?” she asked herself. There would be a lot of people to tell, and she was not looking forward to giving the heartbreaking news.
That afternoon
An early afternoon rain darkened the sky outside Mara’s apartment near the beach in Pensacola. The raindrops made a collective patter on the covered area outside her room. The screen door was still open to the waves on the beach, and each of them crested and crashed into the wet sand, pulverizing a compliant shoreline. The smell of warm and wet pavement filled her living room.
&nb
sp; Mara made a call into the video monitor. George had not left the couch since they had returned. He had spent the last few hours lying down, then found himself napping. Their eyes were both red and exhausted.
Mara had informed nearly everyone they could think would need to know. Parents were called, then George’s brothers, and last would be Mission Control. “This may be the hardest call for George,” she thought to herself.
The monitor rang, indicating the call was going through, then it was answered, and Mara made the pertinent requests for Dr. Nathan Bergman, head of the Copernicus mission. Her call was routed to his office, and he picked up the video feed quickly.
“Ah, how are my favorite specialists for the Copernicus Mission doing?” Nathan asked.
Dr. Nathan Bergman was as smart as they come out of the Mission Control managers. He’d overseen several missions to Mars, including the previous two manned missions, of the four to date. NASA had been favoring him so far as the lead for the Europa Copernicus mission, taking the lead organizational role on the flagship mission for the decade. He was a tall and lanky man, always in a suit and tie, and with beady eyes upon a long face. He spoke in a manner that indicated his upbringing. He had always been especially cordial towards George.
Volunteers for the mission had not been easy for NASA to attract. There was plenty of interest at first, but once the realities of the mission became evident, the long training hours and the five-year journey, applications had dwindled. George had noticed a shift in behavior towards him as the list of potential voyagers shrank to only a handful of applicants with serious scientific backgrounds.
“Nathan, we’re, uh, well, we’re not doing so well here,” Mara said disparagingly.
Nathan appeared troubled. “I’m sorry to hear that,” he said. “Is there anything I can do?”
Mara thought about how to answer. She wanted to blurt out that he should let George go on the mission despite what she was about to tell him, but she needed to present a more successful and thoughtful argument to him.
“I have some news,” Mara said. “It’s George …he’s sick.”
“I hope it’s nothing serious,” Nathan said, then his face suddenly soured. “But… you’ve called me about it, haven’t you?” He paused with his head down, assessing what was to come. “What is it?”
“Well, that is why I’m calling, Nathan,” Mara said, her eyes down.
She was already fighting her emotions, and she knew Nathan could see her struggling. “This wasn’t good for George,” she thought.
“We just got back from an appointment with his doctor,” she told him. “George is having trouble in his limbs; weakness, odd pains, clumsiness, difficulty walking,” she said.
Nathan listened intently. His face stretched into a confused and contorted version of itself as he listened.
“The doctors say… George has ALS. He was tested last week. They are certain of it, and they have no timetable to give us other than it is different for everyone.”
Nathan’s face changed from one of confusion into one of concern. “Mara, what can we do from here? Is there anything I can do for you?”
The offers for help and assistance were already becoming a reminder to her that something was very wrong. She had heard it a dozen times by now. She nodded her head with a strained face, acknowledging the gesture, but she knew there was nothing he could do. She turned from the screen so he wouldn’t see anymore of the distress on her face.
George remained on the couch behind her, unwilling to talk about or address the situation. He had decided to let Mara do the talking for him. They knew the repercussions of their news was already working its way through the Mission Controller’s mind. Mara knew that Nathan was already planning to call the alternate for the mission as soon as her call was over.
“I’m not sure there is anything you can do, Nathan,” Mara said. “But thank you,” she added. “Obviously, we need to talk about the mission.”
Nathan stammered. His facial expressions indicated his discomfort with the subject. He looked as if he preferred to address this later, and she pressed him for an answer anyway.
“George is already seeing signs of the disease. He’s having difficulty walking, but obviously in space that’s not much of an issue,” she began to argue.
Nathan cut her off quickly. “Mara, we can talk about this some other time if you would like,” he said. “Maybe I should speak directly to George when he is ready?”
“I think George would like to know your assessment now, if you don’t mind,” she said. “He’s beside himself thinking that he is not going,” she told him.
Nathan took a deep breath and let out a sigh. “Mara, if what you are telling me is true, I’m afraid there is not much to discuss. Someone on a mission such as this, in George’s condition, makes an already tense situation untenable.”
“Untenable?” Mara shirked.
“Don’t be upset, but there are realities that have to be dealt with. The mission cannot afford to have someone on board that needs constant attention, can cause themselves danger, become ill, or be a detriment in any way to the duties of the other crew. You understand that, don’t you?”
Mara couldn’t get herself to look directly at the monitor. “I do,” she said. Then she looked down at George, who was also looking away. His eyes were even more swollen and redder than before.
“George, I’m so sorry,” Nathan said across the room. “If what you are telling me is true, I’m afraid we cannot continue with the training.” Nathan’s face was heavy with remorse.
George didn’t make a sound.
“Mara, we’ll need to talk as well,” he said. “This will also affect your responsibilities to the mission.”
“I should think so,” she said to him. “I’m not sure how I could be expected to leave George in this condition.”
“We can discuss this later, Mara, but we are not prepared to lose two crew members. We’ll have to speak about…”
“I can’t leave George,” she inserted rather quickly. “You’d expect me to go on the mission while he is sick?”
Nathan didn’t respond to her, knowing she was upset. He stared blankly into the screen, mulling the situation. “Maybe we can talk later,” he said.
Mara reached and turned the monitor off with a quick gesture, refusing to say goodbye, letting Nathan and George know she was not happy with the way the call had been handled.
She fell beside George on the sofa. “There has to be a way,”
she said.
“Don’t worry about it,” George said. “It’s not your fault. And I don’t blame you if you still go,” he continued.
“Are you crazy?” Mara said. “How could I leave you? You’re going to need me here.”
She reached her arms around George and fell over his body. “I could never leave you,” she said. “And I wouldn’t… If I did, you might not even be here when I…” She stopped herself from saying it, nearly choking on the words.
George wrapped his arms around her. They held each other as they thought about the future.
Then George pulled himself up on the couch. He used every ounce of strength he could muster to sit up in front of her. He appeared as resolute as Mara had ever seen him, and she could tell he had something he wanted to say.
“You are going on the mission, Mara.”
She looked at him and shook her head. “I told you I won’t leave you.”
“Nathan will hold the mission for us,” he said.
“Hold the mission?” Mara asked.
“You heard him. They can’t afford to lose two crew members. Tell him you won’t leave without me. I’m going to beat this.”
Mara smiled at him.
“I can delay the progression… learn to deal with it, and it will buy us the time we need.”
Mara was excited to see George so determined
, and he seemed truly willing to do anything. She saw the fight in him she had been hoping to see. She wanted to encourage more of it. George was going to stay on the mission team, fight the diagnosis, and fight the disease. He was willing to do whatever he had to, and Mara knew that he would. She felt a twinge of hopefulness.
She patted him on the chest. “There’s my George,” she said. “We better get to work.”
Two years post-diagnosis
“Mara, you really should take the offer,” a voice said into the specialized care room where George was laying. Cables and monitoring instruments were dangling from his body. The sound of machinery and pumps and monitors occasionally beeping and humming filled the otherwise quiet room.
Nathan Bergman with Mission Control was on the monitor in George’s specialized care room with Mara at his side, as she had been since he was moved to the facility. George’s condition had deteriorated rapidly since he had given up on the mission. Nathan had agreed to postpone it for as long as he could, but only with the hope that Mara would be able to participate.
NASA, through Nathan’s prodding, had agreed to wait for Mara and make sure she was available. She fit the criteria for the mission; young, healthy, experienced, and unattached. And she had also undergone all of the training, and therefore would still offer them an earlier departure time than was otherwise available had they trained anyone else.
George was talking in a husky and raspy voice, barely able to annunciate his words. “Mara,” he said to her, “Do it. Go. They’ve waited a long time. I’m not getting any better. It’s time to look ahead.”
Mara could barely respond. A sullenness enveloped her. It diminished her spirit and sense of adventure. She shook her head at the thought of moving on without George or going on an expedition of any kind while he was still sick.
Nathan spoke for her, replacing the strained silence that had taken the room. “Mara, we’d love to have you. You’ve done well in training, it’s a perfect arrangement. We have a launch window coming up in just a few months,” he said.
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