I’m 17 and contemplating the benefits of cremation while being driven to the hospital to die.
My eyes are stuck on the empty McDonald’s cup sitting in the front console of my parent’s minivan. Momentarily, my mind clears. I look up for a moment and stare vacantly at the highway unfolding up ahead. A fresh layer of snow, blazing in the morning sun, suppresses the mountains that surround my van. The digital thermometer on the dashboard says it’s a painful 14 degrees outside, but my father has the heat cranked so high that the stale heat blowing in my face is beginning to amplify my fever. Moving my hands from the joystick of my wheelchair to my lap, I notice a collection of sweat where they had been resting for the past 15 minutes. My clammy palms are practically dripping, but the sweat has nothing to do with the heat.
I’m going to die. I’m 17 years old and I’m going to die. My moment of mental relaxation slips away.
There is no answer. Out of every possibility for my life, I was born with Spinal Muscular Atrophy. I’ve been in a wheelchair since I was two. This is my life and the reality of what I have to deal with. It’s not fair, and now I am about to die.
Cease to exist.
The world and its billions of people will move on without me and it will not matter that I’m not here anymore. Life will continue as usual for everyone else, while I’ll be underground, decomposing. I shudder. What if my brain can still feel things after I die? Scientists don’t know everything; nobody knows for sure what it’s like to be dead. I need to work up the courage to ask my parents about having my body cremated.
I picture what the last moments of life will be like. I can see the doctors faces as they tell my parents that the pneumonia has taken over my lungs and there is nothing left they can do. They will ask if I’d like to go home to die, to which I will reply no, because at that point I will be desperately clinging to any chance of survival. Then, my lungs will stop working on their own and they’ll have to put a tube down my throat to keep me alive. No more communication, that’s the scariest part. This image has haunted my mind countless times, lying in the hospital bed, covered in wires and tubes that are keeping me alive. I won’t be able to talk to my friends and family.
The hair on my arms stands up as I imagine doctors coming in late at night to ask my parents if they’re ready to turn off life support. I will be aware that they’re making a decision to turn off my life, but the tubes in my mouth will prohibit me from screaming that I don’t want to die. I’m not ready. I’m 17.
These thoughts race through my mind and tears begin to build in my eyes. Please don’t let one of my parents turn around to check on me. They need to think I’m strong, but I’m not. I want to play sports. I just want to stand up and kick a soccer ball, but that will never happen now. I’m not going to get married. I’m not going to have kids. I won’t get to see my brother become an adult with a family of his own. In thirty years, my whole family will sit down for Christmas dinner and I won’t be there.
As Dupont Children’s Hospital comes into view, I force myself to snap out of it. In silence I pray that the tears did not leave noticeable trails on my face.
The emergency room is filled with the most decrepit, sickly, depressing people on earth. Their hacking, screaming, crying, and somber, death-like stares do little to alleviate my stress.
The check-in counter is taller than my head, so my parents have to admit me, adding to the feeling that I’m here against my will. I can’t speak for more than a few seconds without losing my breath and giving in to a series of useless and shallow, phlegm drench coughs, so it’s not like I’m in any condition to admit myself anyway, but the fact that my mom is the one providing the receptionist with all of my personal information makes me feel like I have no say in this decision, like I’m a toddler. Once again, I feel powerless.
Waiting to be called into the exam room is terrible. The emergency room is a very open area, offering little privacy. I’m so weak from the relentless coughing and sleepless nights that I can barely keep my head up. Every breath is a challenge because my trachea is almost completely blocked with phlegm. I’m positive that the young, attractive girl sitting several seats away can clearly hear my gurgling breaths. I’m embarrassed. She appears to have cut her hand pretty severely, holding a blood-soaked cloth around her fingers. What I would give to be in her position.
A nurse comes out of the double doors that lead to hell and calls me back to be examined. My mom has to help me physically lift my hand from my lap onto the joystick that controls my wheelchair. Everyone is surely staring at me right now, wondering what is wrong with me and imagining how awful and different my life must be. I tell myself these are not people I need to be impressing. Still, their sorrowful stares eat at my mind. I desperately want to talk to each of them so that they understand I’m not just some outcast disabled kid who lives in a constant state of disease and illness. I want to tell them I’m not going to die, but I don’t believe that myself, so I do nothing but follow the nurse resentfully and fearfully through the doors to hell.
The exam room is the size of a prison cell. There are giant, rainbow colored butterflies painted on the wall. I wonder if these dramatically painted butterflies have ever once calmed a distressed patient. My guess is no.
Ironically situated a few feet below the butterflies, the “deep suction” machine, used to forcefully remove phlegm from the lungs, is secured to the wall. Even in my state of pure inward panic about my impending demise, this little dose of irony causes me to chuckle. I will never understand how my mind is always so willing to laugh. The cold plastic of the oral thermometer being slid under my tongue reminds me of my present situation and my brief moment of escape fades back into reality.
I watch the numbers on the thermometer climb, knowing that anything over 100 will surely result in admittance to the hospital. I clearly have pneumonia. It’s not even a maybe. But pneumonia is how most kids with SMA die, so I’ve spent the last week convincing myself that I just have a head cold and that the unbelievable amount of phlegm that I have been unable to move is just in my throat, rather than my lungs. The nurse tilts the thermometer towards me when my fever reaches 102, allowing me a better view of the horrible truth that I had been avoiding.
In the hallway on the way to the x-ray room my mind is temporarily preoccupied once again by the reflection of the ceiling lights on the shiny, white tile floor. When I was little, I used to enjoy chasing these reflections of light in my wheelchair, attempting to run them over even though they always disappeared as the shadow of my chair consumed them.
My father gingerly lays my feeble body on the unforgiving metal x-ray table. At this point in my life I weigh about 46 pounds, having lost 10 pounds throughout the previous week. My body has no fat and practically no muscle to cushion any of my bones against the hard table. My tailbone protrudes slightly out of my lower back because of my lack of fat, creating an immensely painful fulcrum upon which I have to balance the weight of my body to stay in the correct position for the x-ray. The pain of the metal grinding against my tailbone, separated only by a thin layer of skin, is nearly unbearable, but I grit my teeth and fight through.
Surprise, I have pneumonia. Now I’m in the elevator on my way up to the pediatric unit. The walls are oppressive and metallic. Several nurses fill the rest of the elevator. All of them are silent; not exactly a welcoming bunch. There is nothing interesting in this small crowded elevator to distract my mind from contemplating my situation once again. My eyes are watering, but I’m not crying, or maybe I am. All I know for sure is that they’re not the same weak, terrified tears from the car ride. In fact, during the 5-story elevator ride my entire attitude shifts from the chaos and fear of realizing I’m about to die to a dogged determination to survive. This complete reversal of mindsets is easy for me, but I’ve had a lifetime of practice.
In another exam room on the pediatric floor a nurse digs around the inside of my left arm with a needle, searching for one of my tiny veins to insert the IV. She pulls the needle out in failure and blood squirts from the open wound. I wince. She starts in on my right arm. All I can think about now is the man who had the exact same disease as me who lived to be 70. I don’t know him, but I have heard about him several times and he gives me an incredible amount of hope. I’m going to put every ounce of fight in my body towards living as long as he did. I will play sports. I will get married. I will have kids. I will get to see my brother become an adult with a family of his own. I will make it out of this hospital alive. I will make it out of this hospital alive. I will make it out of this hospital alive.
Today I’m 19. So far, so good.
*This story has been in the works for a while. I really like it because it stands out from my other posts in terms of the way it’s written. Let me know what you think! The imagination story is still under development.