Visible Zero
“Does it hurt?”
I can’t count how many times I’ve been asked this question in my life. It’s probably close to the number of times I’ve heard, “Oh I didn’t know you could eat that.” If I had a penny for every probing question I’ve been asked, I could probably pay to find a cure myself. Wouldn’t that be nice.
To give you a clearer picture, it’s been 26 years now. Every time I eat, I take a shot. Every time I drink, I take a shot. Six times a day I draw blood from my tired fingertips. They should be empty by now, but somehow they still keep giving like some infinite well brimming with crimson vitality. Every night I go to sleep, and I worry my body will fail and be lost to the dark without my constant, waking vigilance. This has been my routine day in and day out for 9,630 days so far with no breaks. I don’t get to take a break; there are no paid vacations, no holidays, just the reality that at every moment my life is hanging from a tenuous thread.
I can’t say slipping a needle under my skin “hurts”—I mean, it’s not a 10 at least—but it’s also not as low as a 1. To be honest, as one may have guessed, I don’t really notice it anymore. Like everything else, caring for myself has become entirely mechanical; it falls into the same daily monotony as brushing my teeth or making my bed. Still, in those moments devoid of any substantial engagement I find myself dwelling on the question: what is a 10 to a 1? Can we quantify pain that we don’t even notice anymore? Does time obscure our perception, or are we just lying to placate our caretakers? And can one truly be in pain if others can’t see it?
If others can’t see it. I hang on these words. If others can’t see my pain, am I actually suffering?
It’s not the physical pain that hurts the most. I’ve come to learn humans need physical evidence to determine what’s real and what’s not, and like a god or a ghost, people are naturally skeptical until they see it for themselves. But I’m neither a god, nor a ghost, so how do I convince them? A lifetime of mandatory bloodletting and microscopic needle scars perforating my skin don’t really bother me. The tender calluses and the gradient of bruises painting my abdomen are unsightly, but don’t really bother me either. At the end of the day the pain of these things comes and goes like a tide. I’ve grown into them, and I’m no longer afraid of being washed away.
What still aches the most is what people can’t see. The result of endless conversations with worried parents, overly cautious friends, and ignorant bosses; overachieving, underperforming, and hyper-independence; lonesome days, sleepless nights, and four-figure bills; depression, anxiety, and thoughts of death. 26 years of needles pushing through my skin can’t compare to the invisible pain these side effects stir in me. They are my visible zero—a quiet constant permeating my life with a numberless pain that echoes like a whisper in the stillness of my room at night, keeping my mind churning until I finally tire myself to sleep.
So, how do I tell them? On a scale of 1 to 10, how well would they understand anyway? On a scale of 1 to 10, how badly do I need them to know? And on a scale of 1 to 10, how much pain am I actually in right now?