Six years later

Time. Motionless for some, rapidly slipping through one’s fingers for others. For Junmyeon, he was trapped in between. One morning he could wake up, brush his teeth, wash his face, kiss his husband, go to work. The next one, he couldn’t even get up from the bed without help, he sat immobile in a wheelchair, he was dependent on everyone else to live. At first, it felt as if everything was happening far too fast, but now that he looked at the world from his wheelchair, every day seemed like an eternity. Time. How much time did he have left?

Two years and one month had passed since he got diagnosed with ALS, and he was still alive. Statistically, ALS patients died within two to five years after the initial diagnosis. Junmyeon was living. How much time did he have left? Even if Junmyeon always wondered that the question didn’t have an answer. Nobody had it for now. The moment his lungs showed signs of weakness, only then, he’ll have his answer.

But, how had everything changed during these two years and one month?

Well, some months after his diagnosis, they had decided to buy a new house. It was a one-story house that they had modified to help with Junmyeon’s future disability problems. Junmyeon had been a bit distressed about the moving, Yixing too probably. That apartment had been their home for many years, even if he had forgotten parts of it. Junmyeon also loved the view, the serenity of a summer breeze hitting his face as he looked down the city. But at the same time, Junmyeon wanted to have some privacy while coping with the sickness, and that he wouldn’t get living in an apartment complex. The moving was optimal. And if he were with Yixing, anywhere they were it would feel like home.

Junmyeon had resigned to his fate long ago. He knew he was going to die because he wouldn’t prolong his suffering once his lungs started to fail. So, at first, despite fearing how the rest of his body would slowly deteriorate, he had done things to the maximum while he still could. He had walked. He had run. He had worked. He and Yixing had traveled abroad, met with old friends, encountered new places. But the sickness, the unwanted companion, had always been present, progressing slowly.

After his right arm had become completely weak and useless, it attacked his lower limbs, starting from his right foot up to the leg. During the emergence of these symptoms, he had begun walking ‘funny.’ As if one morning, he had suddenly forgotten how to walk. Sometimes Junmyeon had felt he had to drag his right leg while walking. The twitches didn’t cause any pain, but they were uncomfortable. It was the muscle cramps that were the worse. They could be so painful he had to stop whatever he was doing. He also woke up with stiff muscles. But the medicine and the physical therapy helped him relieve some of that pain. It didn’t mean the twitches, cramps, and stiffness wouldn’t be there; they were always there.

As the deterioration expanded throughout the rest of his lower body, Junmyeon had started tripping more and more. He could no longer get up from a chair without help. Even while standing still, he wavered, and his balance was worsening. An ankle-foot orthosis and a quad cane had helped him at first, but it still took him some time to walk short distances, and it required what seemed to be lots of physical strength. He always felt tired and worn out. As these symptoms had progressed, he had decided to retire due to ill health. It was a tough but wise choice. His work had kept him busy from the cruel reality he was facing. Junmyeon liked working, even if his shift had decreased to be two to three hours long. But the disability was more prominent, and it interfered not only with his but everyone else’s performance at work. The fatigue and tiredness were too much to handle, so it was wiser to just quit and take it easy at home. Yixing had been happy with his decision, he had been too worried about Junmyeon. And Junmyeon suddenly got more free time to either spent it with his husband, read, or do whatever he could at home.

Eventually, as more time had passed, maybe a year and eight months after the diagnosis, Junmyeon could no longer stand up with the help of his quad cane. He knew it would have happened at some point. The physical therapist that monitored his progression had said the weakness in the muscles of his trunk would cause a drastic change in his posture and balance. A walker might have helped him to support his body and maintain an upright posture, but because he had no strength in his right arm, he couldn’t use it. So, they had prepared him to use a power wheelchair instead. Oddly, even if Junmyeon hated being motionless and sitting on that chair, he had considered himself lucky. He could afford that kind of expensive medical equipment; his wheelchair was comfortable and optimal for his condition. It gave him some form of independence to navigate around the house and to reposition himself. Other people couldn’t, and they faced, for the most part, a bedridden life instead. Even if by now his left arm had also become weaker, his finger dexterity wasn’t as bad as his right hand. Junmyeon could at least control the wheelchair with his left hand. And thankfully, as of now, the sickness hadn’t progressed more drastically yet, his voice remained intact.

During those two years and one month of symptom progression, Yixing had been there for him, holding and crying with him whenever he cried due to a loss, loving and supporting him. Yixing had been there all the time. As Junmyeon had become more and more disabled, he couldn’t help but feel like Yixing’s burden. Yixing had helped him with everything. Yixing had wanted to be Junmyeon’s main caregiver, he had learned to be one, he had listened to everything the occupational therapist had recommended. Yixing did all the chores around the house. Yixing helped him get up from the bed, getting dressed in the mornings. He raised Junmyeon’s arms and legs to do his daily stretches and exercises. He showered him while he sat down when he could no longer stand up. Yixing even helped with the most humiliating tasks like using the bathroom (at least Junmyeon still had control over his bodily functions).

Junmyeon had been and was thankful for Yixing’s help. That man truly loved him, just like he loved him too. Who else would have, and kept doing, so much for him? But Junmyeon had thought everything was becoming too tiring, demanding, and burdensome for Yixing. He knew that even if his husband never voiced out his frustration or discomfort. Sure, Junmyeon had a young caregiver, Sicheng, that took care of him when Yixing was at work. And sometimes Minseok, Kyungsoo, and Luhan would help them out. It was still too much for Yixing, who worked in the mornings and the nights, during his days off too.

Yixing had been too stubborn and said he could handle everything. Yixing wanted to be there for him, he worked hard to be there, he had promised to be there for him. But if they had kept going at that rate, Yixing would have collapsed of exhaustion, and Junmyeon didn’t want that. He didn’t want Yixing to risk his health for him.

So, that same week Junmyeon had ended on the power wheelchair, they had a discussion. It felt like it lasted for hours, maybe it did, Junmyeon didn’t remember, but they fought a lot. Yixing had felt as if Junmyeon didn’t appreciate his efforts as if he was calling him incapable of both taking care of him and providing for them. Yixing wanted to do both, he could do it, after all, Junmyeon was getting the worse part. It was the least he could do for them. On the other hand, Junmyeon fought to make Yixing realize, he had done enough. Yixing was going to die of exhaustion at some point, it was deteriorating his health, and he wanted Yixing to be healthy, to be strong. Junmyeon was concerned about him, not unappreciative of his efforts. After much discussion, they agreed that Sicheng, and other personal, would become Junmyeon’s main caregivers for the upcoming months. Once, Yixing regained his strength, he and the others would work together to take care of him. Junmyeon would have preferred if Yixing didn’t do anything, but he had agreed to it nonetheless. Now, five months later, Yixing was back at helping him too.

One last thing that accompanied Junmyeon, during these two years and one month, was fear. Ever since his symptoms had begun, Junmyeon had lived with fear. Fear of living with ALS and its symptoms. Fear of becoming a motionless existence. Fear of dying that way. Fear of leaving behind the one he loved. Fear, it was constantly there in many forms. Yet despite the concerns he felt, Junmyeon had coped with it, with the disheartening symptoms and the loss of mobility. Two years had passed, the symptoms had advanced and he was in a wheelchair, yet he was still there, living with ALS. Maybe he was brave after all, or maybe it was because he was too scared to kill himself and put an end to everything. Or maybe it was because of Yixing he was brave. Maybe knowing he had that man by his side, loving and supporting him, was all he needed to keep going until he could.

So, that was how life had changed for him during these two years and one month.

Junmyeon was thirty-six and living with ALS.

How much time did he have left?

A morning in the last days of June, Junmyeon was staring out to their backyard from the porch. He moved his wheelchair, going down the wheelchair ramp, to see a part of the garden up close. Some undergrowth used to grow there. He hadn’t realized somebody had cleaned the place and vibrant, colorful small flowers were there instead. He wondered who took care of them. As far as he knew, Yixing wasn’t into gardening. Maybe it was Sicheng.

He sighed. The sun shone on his face, not too warm, but pleasant. Sometimes he missed the city ruckus he used to hear. Other times he loved this tranquility.

Yixing appeared later. He brought him his medicine.

Junmyeon took a lot of pills, mostly pain relievers, muscle relaxants or against fatigue, and occasional lack of sleep. This was for now, in the future he’ll need medication that lowered the amount of saliva he made, constipations problem, and much more. For some time, he had also taken antidepressants. Only one of the medicines he took now was apt to treat ALS. Having worked in the fields of pharmaceutics, Junmyeon knew that riluzole, one of the only two ALS drugs available, wasn’t a cure and would at most slow down the worsening of the disease and prolong his survival for maybe three months. It was mostly for the slow down he took the drug. He had given up the hope they’ll find a cure long ago. Even if they did, it was too late for his case, maybe one day it’ll help others.

Yixing withdrew the glass of water from his lips, and Junmyeon thanked him.

“Who planted those?” Junmyeon asked, looking at the small bunch of blue flowers that grew in the garden.

“It was Sicheng, I helped him. He said they’re called ‘Forget-me-nots.’”

So, it was Sicheng’s work. “That’s a funny name.”

Yixing smiled. “Yeah. He eagerly listed a lot of meanings. But I could only remember a few.”

“What?”

“They are reminders of your favorite time and memories with another person. And also, true or undying love, a connection that lasts through times.”

He smiled, although it was more saddening, “I see why they got that name.”

They were silent for a while. Yixing sat down on the grass with closed eyes, letting the sunbeams hit his skin. Junmyeon stared at the flowers while thinking about the thoughts he had had for some time. It was important, and while he still had his voice, he should say them out loud. Maybe now was finally the time to discuss his thoughts.

“I wanna see a lawyer.”

“A lawyer?”

“To make a will.” Junmyeon wanted to ensure everything he owned would go to Yixing.

Yixing stared at him. “Isn’t it too soon?”

“It’s better than too late.”

Yixing curled up and looked away, his gaze lost somewhere else, a frown on his face. It was funny, he didn’t look like a thirty-five-year-old.

Junmyeon decided to continue. “You should also know that I want a simple funeral, nothing fancy or anything like that, just you, our friends and close relatives.” He heard Yixing huffing. “And one last thing… Promise me you’ll be happy again. Mourn for some time… But if you find someone else… Love someone else… Then take the chance. Don’t cry over my death for the rest of your life.”

It was all silent until Yixing laughed, a wailing laugh. Then, he looked up at Junmyeon once again. “Are we really having this conversation, Jun? Are you really telling me what to do when you’re dead? That I should love someone else and be happy once you’re gone? Can’t you hear how ridiculous that sounds?! Like you’re not even dead yet! Stop planning things ahead!”

This was part of the reason he had postponed this conversation. He knew Yixing wouldn’t react good to it, neither had it been easy to voice out his thoughts. Yixing loving someone else sounded indeed ridiculous. As silly as it seemed, they were soulmates, there could never exist someone else who loved them as much as they loved each other. But life was unfair, and Junmyeon was dying. He was already in a wheelchair, paralyzed and unable to fully love him the way lovers did. Later, he’ll be dead, and Yixing will be left behind. The image of an old Yixing, spending the rest of his life in solitude, worried Junmyeon. It distressed him to know Yixing would be all alone. Maybe Yixing will be able to find someone that gives him a bit of happiness in his life, someone that walked with him for the rest of his life. And after leaving this world, Junmyeon wouldn’t be there to see him happy with someone else. So, it wouldn’t hurt.

“Every day I’m dying, Xing,” Junmyeon said, “Slowly, but I am. One day I will start having a slurred speech, my voice will slow down, and eventually, I won’t be able to talk. And I won’t be able to swallow and eat properly. I’ll have a feeding tube… But once my lung muscles start weakening, I won’t have much time left.”

Yixing stood up. He walked to stand in front of Junmyeon. He kneeled. His hand grabbed the top of Junmyeon’s hands. One of the things ALS didn’t take was Junmyeon’s sense of touch. He could feel the warmth and softness of Yixing’s hand. It was recomforting. Yixing stared at him with pleading eyes.

“Even if you lose your voice, technology nowadays allows you to communicate with different devices, like those eye tracking things. And about your lungs… A tracheotomy surgery and a ventilator can help you… You know many people live more time with a ventilator, it doesn’t have to be five years. We could have more time.”

Subtly, Junmyeon nodded. Both were perfectly aware of what Yixing had just said, having heard it from doctors, therapists, other patients, or through research. Junmyeon knew about his options and was willing to accept them all until the feeding tube and eye tracking communication device. That was it for him. The idea of being connected to a ventilator, that, he had long ago said no to. The ventilator might give him more time, but it required 24 hours care, more costs, and the disease wouldn’t stop. He would become completely paralyzed at some point, unable to even move and hold up his head. Then there was the severe muscle atrophy. Spending the rest of his life like that… For as much as he loved Yixing, he didn’t know if he would be capable of living that kind of life, even for him. It was too much, too painful, too hard. Since long ago, he had decided he would live until his lungs gave up, a natural death. Yixing had always been aware of that too. And right now, Junmyeon still didn’t feel like changing his mind.

“Xing… I’m truly, truly sorry. I know I keep saying I treasure the time we have together and that I’m afraid of dying… But I’m also scared of living much longer like this. I love you so much, but this damn sickness will continue getting worse, and I don’t think I’m strong enough to keep living like that. I don’t think I’ll ever be strong… I’m sorry.”

Yixing leaned down and buried his face on Junmyeon’s tights. His tights were so much smaller now, just like the rest of his body, another effect of the muscle atrophy. Junmyeon could feel how Yixing’s tears soaked him, how he let out some cries. And Junmyeon also wished he could be able to raise one of his stupid arms and caress Yixing’s hair. He wished he could hug him.

Yixing sobbed. He sniffled. But he still managed to say, “Don’t be, I knew, I know, and I respect that. It hurts so much, so ing much to see you go through with this. I-I wish I could save you, Junmyeon. It’s stupid, I know. But I really wish I could save you. I can’t imagine my life without you, I can’t, I simply can’t, and I don’t want to.”

Junmyeon wished he could too. Now his eyes were getting teary. It felt like they hadn’t cried together since that morning Junmyeon woke up and couldn’t walk anymore. But at the same time, crying felt so familiar, as if they were used to it.

“Please don’t ever tell me to be happy with someone else again. I don’t want your blessing. I will mourn for you for the rest of my life, I don’t care if I’m alone. I love you, and only, you. That will never change, Junmyeon.”

His cheeks were wet now. He smiled. Yixing was punishing himself to live in solitude. It wasn’t okay, it was a little worrying, but Junmyeon wouldn’t be there to see him. And it was what Yixing wanted, and he would respect that too. “Okay, I won’t… I love you too, Yixing, to the end of my days, I will love you.”