I have been carefully contemplating exactly how to write this post for quite some time now. I have been, agonizingly, painstakingly, waiting for a time where I can do these thoughts and feeling justice. Somehow, it only now seems to be happening organically.
The clot is gone. A rib and most of my scalene muscle as well. The injections have halted and my stomach is no longer painted what seemed like a thousand shades of blue and purple. I am back in my own bed.
Somehow, I don’t feel the safety that I expected to.
I can’t shake this awful feeling that I’m another life-threatening occurrence waiting to happen. I feel like I’m back in grade school, experiencing the horror of a fire-drill. Do you remember those days? When you would be unsuspecting. Just comfortable enough. Finally feeling safe in your skin, in your routine, when the alarm goes off. You’re out on your own again.
Your third grade self can almost see the flames licking your skin…reducing you to a mere pile of ash and dust. You say your nine year old prayers, hoping the boy that sits across the room from you will share the skittles he snuck from home as you wait for the firemen in the cold. As you exit the building, you say a silent goodbye to your belongings. To the school that you came to find comfort in and despise at the same time. You think you can smell the smoke, the lingering scent of destruction, and just as the tears start forming in your eyes,
“Thank you for participating in our fire-drill! You are now free to reenter the building.”
And just for a moment you think, wouldn’t this entire experience be easier if you told me I was going to be alright from the start?
But there is no time for that, because the sound of the alarm replays over and over and over again in your memory. You wonder over and over and over again what would have happened if it wasn’t a drill. And then over and over and overagain you ask yourself “is this going to happen again?” And the alarm keeps ringing, and you feel your hand shaking, and suddenly the boy that sits across from you offers you one of the skittles that he took from home, but in the midst of picturing another close call with fiery destruction you’ve lost your appetite.
That’s a bit like how I feel now.
I know that I’m supposed to feel safe. I am safe. Maybe not as much as your average sixteen year old, but if I’ve managed to outsmart this illness with unconventional treatment, off-label medications, and street-drugs-turned-infusion-therapies, for this long, I’ve got to have something going in my favor. My unwilling hands have had life as I knew it ripped from them many times, but that doesn’t mean there will be another. That doesn’t mean that this can’t finally be the end of this spiral of comorbidities. The point where the serious becomes manageable, and the life-threatening fades to make room for the rest of my life.
I may need clinic visits and blood draws for as long as I live. When I am in college, I may find myself telling new friends why I have these scars. I may have to explain to a partner why I take a handful of pills during every dinner, or to a spouse why I don’t know if it will be a good idea for me to have biological children. But these things cannot be harder than what I have endured. I must continually remind myself that recollections come from survival, not places of weakness. These memories and scars are products of surviving awful occurrences. Tragic and traumatic events. But I lived through them, and I must not waste the future I’ve dreamed of– the future that got me through, by dwelling on what was.