I Am a Superhero Battling the Villain of Chronic Pain

I am a hero, dueling a villain.

Each day I wake up and interface with my inner computer to analyze my armor. Where are the weak points today? How can I log the raggedy bits, the parts burning away and the holes piercing my defenses? Every night before bed, I ask my interface to record it all again. The battles I fought. The skirmishes I overcame. The unexpected rumbles that brought me to my knees. The lessons learned.

Unlike the beloved superheroes in children’s comics, I don’t live to save the world. I live, breathe and stand to keep my world. I proudly bear a shield forged from defiance, tears and endurance. I wield grace, self-forgiveness and loss like mighty weapons that slice right through the barriers raised before me. I have learned to adapt to the pain. Bolts of lightning from oncoming forces blast me to pieces, obliterate me into the darkness and threaten to leave me dangling from a precipice — but just as in the best superhero movies, when the audience thinks for sure that this time the beloved hero is dead, something deep inside me growls and I raise my head once more, eyes hard. Bring on the next round.

I am my own line of defense against a raging firestorm. My foes are the best and worst villains. Defeated only for a day or a fleeting moment, they come back like shadows following me through the days, waiting for a chance to find the raggedy bits and seep their way past my defenses in an attempt to sway my mental shields and threaten my willpower to fight back. They evolve with me, they parry with me, they duck, swerve, jab and run with me.

Perhaps you know them? Guilt, a master of deception who creates quicksand traps in the most unexpected of places. Pain, the queen of frenzied impulses who fires away  without control, without rules and without mercy. Identity, the smooth-talker who deals in vague answers, countless questions and distorted images. Fatigue, a smothering cloud of forgetfulness and doubt that wraps her arms around you, squeezing tighter and tighter until the strength within you disappears. Then there’s Sandman, the haughtiest of them all, who whispers promises of sleep that never come.

Each day, I raise my shield, brandish my weapons, harden my eyes and I stand. I stand to keep my world.

I am a hero, but I am not your hero. I do not stand for you to feel inspired. I do not stand for you to feel validated in believing a disabled person could indeed contribute to society. I do not stand to keep my world so you can snapshot it into a meme of “If this tragically sick person can do x, y, z… so can you!”

I am my own hero. I stand to keep my world for myself and those I love because what you cannot see is that it is beautiful. I work hard to protect my world, to feed my world and to cherish my world. My world asks me to duel with guilt, pain, identity, fatigue and sandman. In return it gives me purpose, love, hopes, dreams and life. Sometimes I fall to my knees. Sometimes I am utterly dissolved into a hot mess of goo. Sometimes I come away with only a few scratches for my computer to analyze and file away for future reference on how not to get blasted to pieces next time.

Seeing myself as a hero dueling with the villain in my story, an incurable chronic pain condition, is an alter-identity I can totally get on board with, because it makes sense. Fighting battles, re-forging armor, withstanding bolts of lightning and bracing against thorns of pain searing into me makes more sense than being told to “make do” with a pain condition that has no cure, no reliable treatment plan and no limits to its torture.

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