Ceiling Stars

I didn’t think that people would think this story was true. This is in fact an work of fiction.

I’m an insomniac which means that I don’t sleep much, sometimes not at all. As I lie awake at night begging for sleep to come to me my head spins with extraordinary ideas. During the day I can hardly focus, my mind skips from one topic to the next and my body is slow and sluggish. In the evening I stare up at my ceiling in my hospital room and look at the invisible lights I’ve placed there over the months; each star a different struggle I’ve faced alone while the rest of the world is blessed with slumber. A wisdom that I have never had. My brain focuses in on the topic of the night that I will painfully over analysis until sunrise.

The matter for tonight is the future, my future. No, I’m not running over my education or career plans and I’m not moaning about my lack of a love life, my thoughts go a bit deeper than that. I close my eyes and imagine the world after I’m gone. When my time has come and I take my last breathe who will remember me? Will my death matter to anyone outside of my circle of family and friends? My memory temporarily flittering over the minds of the doctors and nurses as they ponder what a sad unfortunate event my death is. Will my time come too early or will I still be thriving in my late eighties?

When I was little I never thought I’d live past sixteen yet here I am at seventeen. Barely surviving life. Just managing a C average on my school work. I try to study but it all seems so boring. Why focus on learning useless things like geometry when I could being reading about current events or enjoying the company of my family. Useful real life things instead of figuring what the area of a triangle is. Especially since I seem to have so little time.

I have congenial heart disease. My heart is failing me and I am now on the list for a transplant. I was born with a heart that just can’t function the way my body needs it to. So the hospital has become my home. Medications, IVs, and stress tests have become my life. About every six weeks I get to go home to my parent’s house. My room seems strange to me. I actually miss the busyness that the hospital offers. The sounds of people running up and down the hallway outside my room. Whereas at home everything is kept calm and serene. For my parent’s sake more than my own.

Sometimes I worry about them, particularly my mom. She doesn’t deal with pressure well. What’s more stressful than knowing that your oldest daughter has a chance of not living to be twenty one? The bags under her eyes and the tension in her shoulders tell it all. It breaks my heart.

Her way of coping is to try to make me the best I can be. She’s always pressuring me to study, to get top grades. To reach out to the few friends I have more often. She always seems to mutter the word “potential” and comment on how much I possess. She fills in the lines with her silence. Mentioning with her eyes how I’m not living up to the amount I seem to possess but that’s hard to do when you’re dying.

The meaning of her words are loss on me. I try my best to block it out and not think of the fact that I am a failure in my mother’s eyes. As I try to define the mystery of my potential I glance at the clock across the room and see the red number blinking back at me, 3:38AM. If I went to sleep now I could still manage roughly five and a half hours of sleep before breakfast. Not as if you can really get any rest in the hospital with the nurses come in to check your vitals every two hours, to make sure I’m still breathing. A horrible irony.

My family and friends have become accustom to the cloud that circles around me as I half-heartedly attempt to listen to the stories of their lives when they come to see me, not as if I don’t care but focusing for more than minutes at the time is too often impossible. When you’re sick the most common symptom seems to be exhaustion but not the kind that makes you sleep. I’m an insomniac remember?

The kind of exhaustion that makes your body faint but not your mind. The way that the fog can cover the morning ground even though the sun is shining brightly behind it. When your mind is buzzing but you can hardly avert your eyes from the spot on the ceiling let alone stand out of bed.

Every time a friend comes to visit I feel a warmth cover my whole body. When you’re sick people seem to melt away from your life, fearful of getting too close because what would they do if you died? My own sister falls into that horrible category. After our grandma died last year she’s turned inward. Isolating herself, distancing herself. But I don’t blame her, when one family member is admitted to the hospital it’s like the whole family is and who wants to willingly spend their time here?

That’s one way I’m lucky, I have someone come see me at least every few days while some people go weeks without seeing anyone besides the hospital staff. Still, no matter how many times I see my mom and dad it doesn’t replace the craving I have for my little sister.

As I continue to blankly stare at my ceiling my head zooms to famous figures in history. Real people who after leaving this world made an impact and continue to this day to do so; Anne Frank, Martin Luther King Jr., Rachel Joy Scott, Joan of Arc, Rosa Parks, Gandhi, ordinary people that left legacies that are far from ordinary. My eyelids are heavy and I imagine the Sandman hovering above my head, sprinkling dust into my pupils, working overtime to make me drift off to sleep, but I can’t yet, I have to change the world.

In my sleepy haze I contemplate many ways I could make a difference, most much too unrealistic and as the muscles in my back finally relax I come to my conclusion, I can’t make a difference in this world. Instead someone is changing mine. If I do get a transplant that donor, whoever she or he may be will have saved my life. Saved my family’s life.

When this happens, if it happens I will have been given a second chance and then maybe I can make a positive change in the world. I look at my pager sitting on my bedside table willing it to go off. It’s a sign that I am at the top of the list for my blood type. The anticipation feels heavy on my chest, aching with every breath. How evil and horrible is that? Lying in bed praying that someone will die so that I can live.

My family asks if I’m scared, everyone expects me to be but I’m not. I’ve grown up being told that this is the inevitable. That having my chest cut open and ribs broken is what I need and I’ve accepted it. The survival rate for a surgery like this isn’t horrible either, with a less than a five percent chance of dying afterwards.

As I adjust my heart monitor strapped to my chest my eyes begin to droop and I feel myself dozing off when the nurse comes in to take my vitals. She tries her best to not disturb me but that’s a challenge in itself. Still I take comfort in her light physical touches. They remind me that I am still here. I am alive and breathing and that is all I can ask for.

Good night.

About Rachel Lynn Taylor

Writer | Sister | Recovery Warrior | Singer | Fat | Feminist | Christian | Chronically Ill | Life is not easy but I cope through poetry and writing. This is where I share it; my hopes, dreams, struggles, and triumphs.
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