There I was, years ago, planning life to perfection. Those days seem so bittersweet as I remember the blissful nature of ignorance. I fondly remember the days when cynicism didn’t haunt my perception of the world around me. I yearn for the days when I thought hard work and determination were the only requirements for success. I was unaware of the weight of my body, ignorant to the fact that it was capable of betraying me so deeply.
Here I am today, and the person I once thought I would be is nothing more than the shell of who I can remember. My body is riddled with pain and my soul riddled with frustration. I find myself staring in the mirror, wondering why the universe has chosen such a sick joke of torment. I look the same, but I’m simply not. I ask myself if the invisible nature of disease is a blessing or a curse. I am grateful that no one can see my angst, and yet am tortured by the fact that not a single soul will ever truly know me again.
I seem to be a clean piece of paper with torn edges that no one else can seem to notice.
No one knows I’m fraying, and I’m spending all of my energy making sure they don’t.
I know a single spark could ruin me, but I can’t seem to escape the flame. I know I could combust at any given moment, and yet that leaves me obsessing over making every second count.
Anxiety has become a cloud pending above me; I can never quite see the sunshine. Exertion seems to be the only distraction I have left. As I run through the fatigue I can sense the impending crash, and yet I can’t slow down for fear of feeling. Everyone keeps telling me to relax, but yet I don’t remember what that feels like. The moments I am still are the worst kind of storm, exhaustion ricochets through my body, pain crawls all over my skin, and my mind swarms with despair for what I never thought I would be — but am. Silence brings reality, and I’m terrified of what that might look like.
I have become obsessed with a schedule, which seems ironic for the amount of times I can’t fulfill it; and yet I need it, I even crave it. I need to know what I’m running for; I need a reason to get through another hour. I know I can’t sit, and I certainly can’t stop. If I choose to sit in this moment I may never get back up again, and so I stare at the mattress angered by its temptation. I am at constant war with myself and the voice inside my head. Every fiber of my being is telling me to quit and my mind accepts it as a bitter challenge. That challenge is one I will die for, long before I will accept failure.
I have clung to my stubbornness, and I hold it so tight my knuckles are white. I watch my own independence slip through my fingers like the finest sand, but I’ll keep trying to hold it until I find the means to capture it. I laugh at my prognosis because my tears have run dry, and I wish I could personify this illness long enough to look it dead in the eye. What would I say, I wonder. And then it dawns on me, “You’ll never stop me, but I dare you to try.” While my resilience seems to wear, the fight between my mind and my body has become the war keeping me occupied.
Exhaustion is teasing my eyes, but my anxiety is strangely invigorating. It won’t allow me to sleep and it won’t allow me to rest, it just keeps reminding me of my own mortality and failed attempts at normalcy.
I’ve lost compassion for some, but I’ve gained empathy for all. I find solace in solving others’ problems because it distracts me from the unsolvable nature of my own. I’m beyond repair but the world isn’t, and so I’ll fight to restore others since I can’t fix myself.
I’m standing somewhere between optimism and realism, but failure seems to be the fault threatening to tear me down the middle. The fear I harbor isn’t for myself, it’s for the perception others have of me. I can’t let anyone know a bad day is pending; they’ll think I’ve lost to this disease. I beg others not to worry about me — it will threaten the false sense of invincibility I’ve worked so hard to portray.
Sympathy is the look I detest most, it reminds me that I’m less than who I once worked so hard to be. I put my feet on the ground, I grit my teeth through the pain, and in some sick way I equate that with winning. As I contemplate that thought, I realize no one can appreciate an accomplishment if they don’t know the battle.
I’ve learned to fake the emotions I desperately want to feel. I wish they weren’t tainted by the incessant reality of my diagnosis, but they are. It dawned on me long ago that I would rather be a participant in this life rather than a bystander, and so I will welcome the falsehood of my smile rather than the exposure of the numbness that plagues my soul. This isn’t a lie, this is survival. Although I may not believe that, I will repeat it until I do.
So who am I? I’m a woman who once valued obstacles for the drive they could provide. I’m a person who detests the laziness of my bones and the strength of my muscles. I’m a woman who thought I had it all figured out when my world crumbled around me. I’m a person that will consistently drive myself into the ground because it’s the only pleasure I seem to get. I don’t know if they call this coping, but I sure do know I call this life.
Keep fighting, keep loving, and keep believing.