posted on: Thursday February 1, 2018
by Erin Lucey ’20
Buzz Buzz. My eyes snap open to begin another day. I am hopelessly exhausted, though I rarely take more than eight or nine steps a day at this point. The balloons tied to the foot of my depressing hospital bed rustle and sway as I try to sit up. Over the past five months, my condition has been quickly worsening. By now I am prescribed nothing but a cocktail of painkillers, all intended to maximize my comfort as I sit here and slowly die. They say my condition is rare, and that the “treatment I have chosen” seems best for my life situation overall. Because I am a minor I am fully out of the loop, left out of the meetings that discuss my fate and trapped here like a dog in a cage.
While I know that there is not much that can be done for my illness, I sometimes feel that these doctors aren’t even trying. Like, isn’t it their job to think of something to do even when there’s nothing? Allowing a previously normal and healthy 16-year-old to sit here and die must fill them with at least disappointment, maybe even guilt? I’ve been trying to get some sort of explanation from my parents of the reasons, options, or rights that I have, but they have this fierce desire to “protect” me from the truth, trying not to scare me by always changing the subject. Today, however, I know that my parents won’t be visiting until after 4 p.m., so I am allowing my curiosity and stubbornness to take over while I still have the energy to feel them.
The nurses accidentally left the binder of my file on the desk in the corner of my room last night, so today’s steps are dedicated to getting to the binder, reading all the med lingo about myself as a patient, and getting back to my bed. It’s now or never. After four long deep breaths, I sluggishly swing my legs to the side of my bed, and grabbing onto the railings and side table, I am standing. As I trudge my aching body over to the desk, I am filled with a wave of motivation, a hint of thrill for what I am about to see. When I finally make it to the desk, I feel like I could collapse right there, but I reject the fatigue and grip onto the table for support. I just need to know what exactly exempts me from any experimental treatments for this disease. I was so healthy five months ago!
Opening the binder fills me with excitement and anxiety, though the first page I see is enough to stop me from flipping any further. The sheet that sits at the top of my file is a waiver, signed boldly and clearly by both of my parents, distinctly restricting the doctors from providing me with any of the known, previously successful treatments for my condition.