Before June

Before June: Four✓

I turned the shower knob and looked up, welcoming the cold water pouring above me. I smiled bitterly when my favorite song started playing on my phone. I smiled more reluctantly upon hearing Nurse Barb calling my name from the outside of the bathroom.

She knocked three times on the bathroom door but I remained silent and let the cold water flow into my skin. “I’ll be back later to check on you. Don’t spend too much time in the bathroom.”

I took a deep breath and began to clean myself. I was drying my hair using a dry towel when I heard a familiar voice inside my room, like five to three people murmuring about something. I slightly turned down the music from my phone and listened to what they were talking about, confirming my conclusion while gently combing my hair and looking at the mirror. The dark circle below my eye is so visible, with pale skin, and a thin body like I’m not eating even though I eat a lot of food every day. I look like a ghost.

I sighed and put my nasal cannula on my nose—a device used to deliver supplemental oxygen or increased airflow to a patient or person in need of respiratory help—and placed the comb in front of the mirror where my things are also there before holding the doorknob and go out from the comfort room wearing a simple white oversize t-shirt with a print letter on the front, saying “You’re brave” and a Japanese plaid pants.

I just looked straight ahead when I got out and went to my bed to get my laptop that was there—completely ignoring my family who was sitting on the couch. Dad, Mom, Cleo, my brother, grandpa, and grandma. I honestly don’t know how to act or what to say.

Should I say hello? Hug them and say I missed them so much? Or should I just keep quiet and let them do the first move?

I just picked the third one and quietly sorted out the mess I had on my bed. I could even feel their eyes watching every move I was making and it’s making me feel uncomfortable which made me want to run towards the door and get out of this room.

It’s been a while since they last visited me because that’s what I wanted. I’ve been here for almost 8 months straight, living my treatment so I can live. And I asked them not to visit me, so they did. They just visit me twice a month or once a month, I don’t know. Whenever I got surgeries, no one was there by my side, holding my hands, saying I’ll be alright.

Even though I wanted them to always be by my side, I just can’t. I don’t want them to see me suffering from my illness. Although, I can live a normal life. Also, they need to take care of grandma and grandpa because they both do dialysis at home, with their private doctors monitoring them. Grandpa and grandma needed them. And also, Cleo needed them, too. So, I’d rather be alone here.

Our house is quite far so it’s hard if they always come here. Gas is expensive. They are surely always tired from taking care of grandma and grandpa. Cleo also needed our parents who’ll take care of him and will guide him while he’s growing up. That’s why I don’t want to be a burden anymore.

“Anna,” Mom softly called.

I turned my back and faced her. “Mom.”

She smiled at me but I caught a glimpse of the passing of pain in her eyes. It was as if she was hiding something that she wanted to tell me but she couldn’t.

She came over to hug me. I didn’t responded nor smiled at her and just let her hug me until I could feel a hot liquid dripping down on my shoulder as she hugged me more tightly.

“Why did you do that?” she sobbed.

“We’re so worried about you when Nurse Barb called and told us that you’re not in your room at 8 in the morning.”

It was like something was blocking my throat, making me unable to answer her question. I feel like if I spoke, I would surely burst into tears, saying how sorry I am for making them worried.

It was as if a storm had passed through the room because it was so quiet and we could even hear our breathing, only Mom’s sobbing could all be heard inside the room. The atmosphere was awkward and heavy as Mom let me go in her tight embrace.

Dad came to her to support her and to calm her from crying. Mom hugged him tightly while still crying, making me feel like I am the worst daughter in the world for making my soft mom cry. I could do nothing but act as if they weren’t around, and it wasn’t my fault why Mom’s crying even though it’s clearly my fault.

“Why are you all here, by the way?” I asked.

Their eyes went to me and examined me like what am I talking about. Gez, I know they came here because of ‘that’ incident but I’m not still ready to talk to them, not yet. After all, I found out then? I can’t talk to them yet.

“When will you be ready then?”

When will I be ready? I don’t know, I’m a coward, always be. I’ve never been brave; I’m always running away because I’m a coward.

I averted my eyes and turned away from them and took my mask to go outside. What a shame. Useless daughter.

I was about to turn the door open when Cleo, my brother, leaned against it. He was looking at me with a begging eye and as if he wanted to say something, but he couldn’t. His eyes were red as if he had just finished crying. His eyes were also dull, and he seemed to be pale as if he hadn’t had a proper sleep for several days. Is he sick?

“They are still talking to you,” he said. “Talk to them. They came here to check if you’re okay or not. Yet you just ignored them like they’re just air to you. Don’t do this to them… to us, Noona.”

I was shocked by what he said but I did not react. My baby has grown up really well and I’m happy that he has grown up like this. I know he’ll be successful soon and I won’t be able to see him achieve his dreams and goals. By the time he became successful, I knew I was no longer by his side. He’ll no longer be the little brother I used to tease. It was as if something was pinching my heart because of that thought.

Dad and Mom no longer pay much attention to him like they used to be because of the amount of work they do. So I felt sorry for him for having a sick sister like me. I should be the one to take care of him because both our parents are taking care of grandpa and grandma. But here I am, being a burden to our family and making them worry about me because of my stupidity.

As I’m always doing, I acted like I didn’t hear it and ignored him, trying to open the door but he’s way stronger than me so I can’t open it.

“I’m okay, you all don’t need to check me if I am or not. I’m sure the doctor already told you all what’s my condition is,” I mumbled. “You even brought grandma and grandpa here, what if they got infected with any bacteria here in the hospital? So, let me out of here Leo, I’ll just go outside and take a break.”

Cleo looked at me intently and examined me. His forehead furrowed as if wondering if he would let me out or not.

“Let her,” Dad commanded.

He had no choice but to let me get out. He sighed and leaned over so I could get out. I walked down the hallway, I met many nurses and doctors with uniforms, as well as few people I didn’t know. Other nurses and doctors who know me smiled at me before they passed me while I’ll just give them a nod in return.

I walked up until I was on the last steps of the stairs to the rooftop. I coughed and made the doorknob my support so I could breathe properly.

I pushed it away and immediately closed it, I just sat there and hugged my knees while the hot liquids from my eyes kept flowing.

Why is it so hard to live? Why is everything always so complicated? Why do I always pretend to be strong, that I can and still fight even when it’s so hard? That’s how I’ll end up, I’ll die, too. It really took a while, but I know sooner or later, I will die, too.

I’m breathing with a burrowed air, sooner or later I won’t be able to watch the sun rises from the horizon, I won’t be able to witness the star shining brightly from the night sky, and I won’t be able to explore the world as I’ve always wanted to do.

How cruel is the world to me? But whether I admit it or not, I’m scared like a cat that’s scared to rain. I’m scared I might leave this beautiful place. Yes, it’s beautiful. But like what they say, “there is also an unpleasant side in every magnificence side.”

I always wondered why do we have to live if we will die eventually? Is there really an afterlife? Or heaven? What’s the meaning of our existence? Is it all for nothing in the end? Are we just going to a night of deep wakeless one? They say living is way more painful than dying because you’re just going to die once; while living is so hard because you need to suffer every day with those oppressed people.

“Annalize Lorei Vanidestine.” I came back to reality when someone gently patted my head and uttered my whole name. “You’re brave.”

I slowly lifted my forehead from resting on my knees to see who it was, only to see it was Elm standing in front of me while emotionlessly staring straightly at my teary eyes. It’s as if he read what’s in my mind.

“Stephen Hawking once said...” he stopped. “Remember to look up at the stars and not down at your feet. Try to make sense of what you see and about what you see and about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do, and succeed at. It matters that you don’t just give up.”

I wiped my tears with my fingertips and stood up from hugging on my knees. I just watched him as his thick eyebrows met and his forehead furrowed as he looked into the distance as if deep in thought. The wind blew his soft black hair, as he looked like a model in his simple plain oversized t-shirt and shorts.

I just watched him as the negative things I was thinking completely disappeared from my mind. But the questions that were on my mind were getting more and more overwhelming and my curiosity engulfed me even more. I knew I was wrong because it could bring danger to me.

“You’re always thinking about death,” he started. “Why don’t you enjoy your life while you’re still here?”

“I don’t know. Maybe because I’ve already accepted that I will also die when the day comes and there is nothing else that I enjoy doing here in the hospital,” I answered. “Aside from taking a lot of medication, waiting for my death, surgeries, and breathing borrowed air, there was nothing to enjoy here.”

“That’s cold. Is that so?” He looked at me with no trace of emotion on his face but seriousness. “Didn’t you say, you’re just waiting for your death. If so, why don’t you take the risk? Why don’t you do what you love, like explore the world? Go to places you like? Bond with your family? Catch up with your brother? Or stay here and be with the people you value and love while doing your treatment?”

I looked away and thought about what he had said. Do I really want to take risks? But why is he telling me this now? Waiting for my death? Did he mean that I’m really dying and I’m really running out of time? I’m confused, he’s making me confused.

“Take care,” he said last before I finally got off the rooftop.

As I walked towards my room my forehead furrowed because of what we had talked about.

“Your parents are waiting for you in the cafeteria.” Nurse Barb approached me. “Better go there,” she said before I finally got off the rooftop. “Because they have been waiting for you for a while.”

I feel bad for what she had said. They have been waiting for me for a while now. Nurse Barb tapped me on the shoulder and smiled at me. She seemed to want to convey that I had to face them or go there because they were still my parents before she left, leaving me alone in the hallway. I sighed and decided to go to the cafeteria. I quietly made my way there and quickened my pace. I’m sure they’re very bored right now, waiting for me.

I was just standing straight behind Cleo, Mom, and Grandpa, a few meters away from them. I’m thinking about whether I’m going to go or not, they look happy, I might be the cause of the silence around them that I didn’t want to happen. Mom, Dad were laughing like teenager’s best friends who were just in the school cafeteria, so were grandma and grandpa while Cleo was just teasing them as if they were happy friends inside the cafeteria. They were also just the noisiest of all the people in the cafeteria.

I just turned around to go to my room and let them there. I’ll just go to my room and do my nebulizer as well as my AffloVest—a fully mobile airway clearance therapy for patients with severe respiratory diseases, and take my medicines, which I need tonight.

I’ll just call maybe later Phoe—also a Cystic Fibrosis patient—whose room is not far from my room. The other day, he just underwent surgery, so I couldn’t talk to him. He’s been my best friend since seven, so we both know each other more than our family does. We treated each other like we were siblings. Though we’re not, we’re just cousins who happened to have the same disease being resisted.

I just showered and put on a nightgown before my body collapsed on my bed. The surroundings are dark, only the light in front of my door serves as my light. I don’t like it too bright; I like it little. People call me a weirdo because of that but I don’t call. I’m not affected, and no one insults me here.

I just stared at the ceiling for a few minutes, thinking about something before I sighed again and decided to call Phoe to distract myself from the negative thoughts. Nurse Barb along with Nurse Jade recently came here to check on me. I also finished taking my medicines, took the nebulizer and AffloVest.

I picked up the iPad at my feet and rested my back on the headboard of my bed before pressing his name to call him. But I couldn’t call him because it seems like his iPad isn’t open. Maybe he was resting already. So, I just dropped the call and leaned my head against the wall and closed my eyes, letting my tears flow on my cheeks again.

My mind was full of painful realizations in life. Negativity is eating me alive again. If I had to choose in my next life, I would be free. Free from the cage I was confined to. I feel so uncontrollable to myself. All of my life, I never do the things I really wanted. I always put the pleasures of others before my own. All my life, I always hated myself. Now I would have liked to, I would have put myself first—the one I want to put first, but I can’t.

It’s not time to be selfish and do what I want to do. Many people I love will get hurt because of what I want to do. But, that’t what life is, right? If someone leaves, you will be hurt, won’t you?

Life is full of sacrifices, decisions, risking, and letting go of someone you loved, right? Every story has its end and every story has to end, right? So mine, too. I had to leave because my time is already running out.

A deafening silence engulfed the interior of the room. I’m getting tired. With each passing day, I feel weaker and weaker. I am a CF patient with a B Cepacia or Burkholderia Cenocepacia infection within me. It means there’s no lung transplant for me.

Life really sucks, isn’t it? But as they say, “always look at the bright side” so I did. Because I needed to. If I keep thinking bad things, everything will be complicated for me. I’ll surely just die than be here, suffering from this disease, but no. There are things worth living, worth seeing, and worth feeling. I still have a lot to do in life, so I can’t. If others can fight, so can I.