It’s days like this that really make it hard to live. Even before I was stricken with ankylosing spondylitis, I found it exceedingly difficult persevere at times, but now it’s unbearable. What happens when the pain gets worse? Is life more unbearable? You would think that once you reach the point where you cannot possibly bear any more pain, it increases. It multiplies. It goes beyond unbearable. It shatters all notions of normalcy and grinds you to dust.
I’ve been dealing with a minor flare up for a couple of months, but the past week or two, the pain has been increasing exponentially where I’m continually thinking that I’ve hit my plateau. As I unwrap a new day, I find that I was horribly mistaken and the previous day could easily be compared the greatest landmarks of my life–my wedding, the birth of my children, or the first time I tried hot chicken.
It’s times like these where I cannot hide from…myself. I still have dreams and aspirations. Granted, these have been muted as I have come to realize that my life has been forever changed. Oftentimes, these dreams and aspirations have been reduced from the realistic (I mean who doesn’t want to be an astronaut), to the impossible–like twenty minutes of normalcy.
It’s funny that I have a disease that traps me inside a shell of myself. It’s amusing that I’m cocooned in a broken body in which there is no escape. It’s comical only because I am what I have always feared–a cripple.
Of the many things I have feared, two are notable: fear of pain and fear of being trapped from within.
I remember a small cut or insignificant burn could ruin my day. It sounds ridiculous now that there is no such thing as life without pain, but if I stubbed my toe or skinned my knee, it was time to close up shop because my day was wrecked. Life was on hiatus.
When life wasn’t interrupted by bruises and scrapes I was occasionally overcome by the dread of living in a body that didn’t work. More specifically, I was afraid of being paralyzed. I still am because I know how quickly it can happen.
One Minnesota winter night when I was nineteen, I was outside in the snow with a bunch of friends. I was teasing my buddy Shawn and the angrier he got, the more delighted I became. Apparently, I went too far because he punched me right as I turned to walk off. No warning. I just remember the jolt of electricity that shot through my body as he punched me in the back of the neck.
I instantly dropped to the ground as my body folded under itself like a marionette. My body was numb and I couldn’t move. I went from surprise, to terror, to anger in about three seconds. I was laying in the snow on my back with my limbs askew when I began cursing Shawn for paralyzing me. I thought my neck was broken.
Between my shouts for an ambulance and my colorful insults, everybody thought I was playing around. I’m surprised the neighbors didn’t call the police as this went on for ten minutes. By then, I was getting my feeling back. I was able to clumsily flail my arms like a drunken infant. I was staggering, then walking in short order, but the experience made me even more fearful of physical disability.
So here I am today passing the time on the couch waiting for bedtime. Tomorrow morning will arrive too quickly for another day of work followed by an afternoon of couch surfing. I’m not going to assume that today will be my worst day, but I’m not going to hold my breath for a better one either.