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I hate hospitals. They always smell like fear. You know that musky odor that just drags all around you like an illness? You get a scared feeling as soon as you feel it, but then you realize that you’re not even the one who’s sick. Yeah that smell.
I arrived at room 304. I slowly open the door just enough to see if the nurses are in the room…nope, coast is clear. I enter the hospital room to see my little sister asleep on the cot. I slowly walk to her, careful not to wake her up.
She is lying there with six wool blankets wrapped up, enclosing every inch of her except her head. It pains me to see her so uncomfortable but it’s irrelevant now that she is asleep.
I take a chair from the far side of the room and plant it beside her. She barely looks like my sister anymore. She looks worn out like someone who is just giving up. This worries me, but there isn’t anything I can do about it now except watch over her and make sure she keeps fighting. As I look over my sister I notice the usual features – mom’s nose, dad’s mouth and jet black hair, my hazel green eyes, and goose bumps everywhere. Some people would think that it’s unusual to have goose bumps with wool blankets encasing you, but those people don’t know my sister.
Jenny has been fighting Congelare Syndrome for almost fifteen years. No one, not even the “best” doctors know what it is or even how it starts. All they know is that when you have it you feel cold on the inside to the point of showing goose bumps, but to someone else you feel as though you have a high fever. When Jenny woke up one morning, she said it’s like freezing yourself from the inside out.
I used to get a little scared going to visit her because she was always red-faced and covered with goose bumps. I finally asked her about 3 years ago why she gets so red. She whispered in the best audible voice she could manage, “It’s the same concept as when you put an ice cube in your mouth and your face gets red. It does that because blood is rushing to your face to warm it up from the freezing ice.” From then on I imagined her body being filled with ice cubes.
Jenny is one of about one hundred people in the world with this disease. Aside from having goose bumps and looking extremely red, Jenny almost always feels tired and weak. That alone is hard for me to imagine because she is the strongest person I know.
As I sit down, I slowly lift my sister’s hand and place it in my own. Her hand is so small and lifeless, like a doll’s. I carefully start to stand up to leave when I hear a light coo.
“E…E…El…Eli?” she just barely whispers.
I sit back down.
“I’m here sis,” I say quietly almost as if by talking too loud I might break her. She looks so fragile.
“Eli…are…are you leaving?” She asks.
“I don’t have to. I just came in to check on you, but now that you’re awake I can stay,” I whisper back.
“W...What time is…is it?”
I fumble for my phone in my pocket.
“Seven- thirty,” I reply.
“Go…h…home. It’s a school n…night. Y…you have homework.”
One thing about Jenny is that she doesn’t like anyone worrying about her so she tries to make sure my life isn’t changing just ‘cause I now have to drive to the hospital to see her every day. But to be honest, I don’t care about school anymore. Jenny is significantly more important.
“No, I want to stay with you.”
“E…Eli, you don’t h…have to worry ‘bout me,” she argues.
“I’m staying,” I spit back.
“No. M…mom needs you at home,” her responses are getting quicker. I’m slowly upsetting her.
“I don’t care. You are more important.”
She then crossed her arms as best she could under the blankets and pouted. It reminded me of when we were little. She used to do that when she didn’t get what she wanted. Remembering the old days made me realize I was about to do something I make an effort to never do. I was crying. Not hard heavy crying, but enough so that my vision was blurry and Jenny noticed.
“Why a…are you crying?” she asked in a strained voice. A pained expression started spreading across her face.
To be honest, I don’t know why I’m crying. This whole situation with Jenny is very hard to handle being a sixteen year old boy. I try not to show how I feel. I try to be the strong older brother, but even I slip up sometimes.
I usually attempt to hold in tears, but in here in the hospital it felt acceptable, so I let the salt water drops fall.
Jenny notices and instinctively shakes both arms loose from the blankets and closes me in a warm hug. We stay like this until the tears stop. Jenny lightly pats my back the whole time.
A knock on the door made me quickly sit up. The voice on the other side of the door was small and high. A voice I instantly recognized as soon as she spoke.
“Jenny? Eli? Can I come in?” The sound of her voice quickly dried my remaining tears, but I still struggled to compose myself before I answered.
“Court, give us like five minutes!” I called back.
Courtney is my girlfriend. We have been dating for about a year and my sister hates her! I’m not quite sure why though. My mom thinks it’s because from Jenny’s point of view, Courtney is “taking” me away.
Jenny winces as we hear Courtney’s footsteps outside the door.
“I can tell her to leave,” I say trying to calm her down.
She shakes her head and whispers, “No, L…let her come in.”
I yell to Courtney and she enters, barely making eye contact with Jenny.
“I want to talk to both of y…you,” Jenny says, “The doctors said that the syndrome is getting worse. I…it is taking o…over my heart and they don’t know how long I have …left to live.”
Courtney and I both stare at her in shock. My mind can’t even process what I just heard. I might be LOSING my sister?! Jenny is all I have as far as family. Our mom is a drunk and barely ever makes it home from the bar and our dad died in an airplane crash when I was four. Losing my sister meant losing everything. I can’t lose her!
Courtney is taken over by guilt of somehow making Jenny hate her. She didn’t know what she did but she was apologizing for EVERYTHING. All throughout Court’s speech Jenny squirmed and looked like she was trying to yell but couldn’t quite get the sound out.
Finally Jenny squirmed her way to a sitting position and used everything she had to yell, “NO! STOP COURT!”
Courtney immediately stopped frozen with shock.
“Don’t a…apologize for anything. It w…was me. I made your life h*ll because I d…didn’t want to lose my brother,” Jenny pleaded. She reached out for my hand and when I gave it to her she lightly kissed it. I pulled my hand back and backed up a step. Her kiss stung. It felt too much like a goodbye. She looked worried but knew why I had backed away.
“E…Eli, I’m getting w…weaker by the day. I might not be able to fight much longer and I need you to know something. I’m not g…going to make a lovey dovey speech, but I do w…want you to know some things. One, if I d…don’t make it…” She saw the horror on my face and put up her hand to tell me not to interrupt her, “…I want you to go h…home and try to help mom. Maybe try to get in t…touch with our cousins and other parts of our family again. I miss t…them. Two…” She then looked at me and Courtney. Her eyes traveled down to our interlocking hands. She smiled, “…Two, Stick together both of y…you. You need each other more than I ever wanted to believe. And three…” She reached for my hand and I placed it in hers, “…Three, no m...matter what, I love you Eli.”
Tears fell down my face and I didn’t try to hide them, not now. Courtney fell to the floor and sat there silently crying. I leaned down to Jenny and hugged her, while she wiped a tear from my face. Our hug lasted until her arms got loose and fell to her sides. Her eyes were closed and lifeless, just like the rest of her body.
I sat there next to her, holding her motionless hand and quietly whispered, “I love you too,”