Listen, I don’t need to be the one to tell you that chronic pain is one of the most obnoxious characteristics of being disabled. The muscle cramps, inflammation, spasms, and generic aches are so ingrained into the identities of disabled people that we’ve essentially become professionals when dealing with our issues.
As much as I hate Inspiration Porn — managing my pain is somewhat of a superpower, albeit a pathetic one. I may not have the money of Bruce Wayne or the Power Ring of a Green Lantern, but I can sure as hell put a fake smile on my face when my entire body is falling apart!
During particularly bad episodes, I can usually escape into my work, which just so happens to heavily involve playing and discussing video games. Performing character movements and actions or manifesting my thoughts onto a page turn out to be excellent diversions when my body decides to malfunction. With what little strength I have, every movement of my fingers or breath I take to dictate words quite literally forces me to ignore the ever-increasing pain to complete my task.
Is this method helpful? Probably not. However, when living in a world that still cannot decide how it wants to properly care for disabled people, I’ll do what it takes to survive.
Normally, my pain manifests in the form of muscle exhaustion or limb aches. While stretching and the occasional hard drink allow me to function (disclaimer: please drink responsibly), there are certain episodes that leave me doubling over in severe pain.
Things are about to get weird below this point. For those who are slightly squeamish, I recommend looking away.
At the innocent age of six, a feeding tube was surgically placed, on account of my inability to consume life-sustaining calories. This failure to thrive could have been entirely avoided had I simply decided to drink two calorie-laden drinks per day. But, in typical Grant Stoner fashion, I decided to be a stubborn little shit and ignore my parents’ and pediatrician’s pleas, instead choosing to accept the operation, solely because I refused to drink chocolate-flavored garbage. Now, two decades later, I wish for nothing more than to go back in time and use what little strength I have to forcibly shove those shakes down my throat.
Now, I must admit, having a feeding tube can be beneficial. Dad is cooking his famous chicken and broccoli casserole? No thanks, my tube, and I will enjoy a nice frothy Nutren 2.0. Does that new medicine taste abhorrent? My tube lacks taste buds! Yet, despite the numerous advantages, the pain of having a feeding tube is indescribable.
Every year, I go through the rigorous process of replacing Satan’s stomach valve. While this procedure is relatively painless and easily done at home, the aftereffects leave me grunting, groaning, and reciting expletives, so much so that the local Catholic diocese tried on numerous occasions to perform an exorcism.
You see, whenever the tube is replaced, the skin within the stoma (hole), as well as surrounding the outside of my tube become incredibly inflamed. This inflammation can last for weeks, sometimes months, leaving me a whimpering mass of crippled flesh. Why? Because the inflammation is caused by stomach acid which escapes through the hole. In other words, my body is literally trying to digest itself.
It is beyond impossible to explain the sensation other than comparing it to being thrown into a hot tub with a severe sunburn. Is someone cooking bacon in the kitchen? No, that’s the sound of my flesh sizzling. I realize I’m a snack, but this is ridiculous.
Performing any task with this kind of excruciating pain is nothing short of an Olympic feat. Understanding and critiquing the mobility accessibility intricacies of being a fighter pilot in the Star Wars universe are particularly difficult to convey when my stomach decides to start feasting on me. Even while writing this piece, I regularly must remove the “Ows,” “Oofs” and “Please, God, let me finish this F&#%ING SENTENCE!”
While this story does not really pertain to video game accessibility, it highlights a crucial aspect of life as a disabled individual — dealing with chronic pain. The frustration, screams of anguish, and pleadings of a disabled person in pain are unavoidable realities for many. Now, do not use this story as justification for coddling disabled people. Just understand that our pleasant exteriors may be nothing more than masks to hide our chronic pain.