Here’s the Thing, or, Rebellion

Here’s the thing about chronic pain that no one ever tells you: it never goes away. Well duh, I hear you say; but think about it, really think about what that means. Try to imagine living that reality, existing forever in a world where pain is just a part of life. The pain is always there, no amount of rest or relaxation help at all. Sleep probably helps, but you wouldn’t know, because you haven’t had a decent night’s sleep since at least 2010. You take the strongest over-the-counter drugs you can get your hands on, but they barely even take the edge off. You dream endlessly of opioids, of sweet oblivion, of floating on a pain-free cloud. You spend a lot of time feeling sure it would be a lot less hassle to be dead.

Here is what your day looks like when you have chronic pain: awful. You wake up stiff, sore, and exhausted. You expend a ridiculous amount of your very limited energy getting yourself ready for work. No one tells you how much effort it takes to shower when every fiber of your being is screaming in pain. You go to work, and spend 8 hours trying to focus dammit. There is so much that needs to be done, but all you want to do is lie down on the floor and weep. You swear that the next time you are forced to make a decision about something petty you will scream. You wonder how the 1–10 scale of pain ever became a thing, because it does nothing to explain the mind-numbing, soul-destroying agony that you are feeling. You make jokes about how much of a disaster you are, because otherwise you would cry about your train-wreck of a life; at least, that is what you would do if you weren’t sunk in the emotionless pit that is depression. You finally are allowed to go home, and you think about all the things you could do in your spare time; all the books you could read, the movies you could watch, and the fancy food you could cook. Instead, you eat whatever requires the least effort. Then you go sit in the bottom of a very hot shower and continue to be unable to cry. Finally, you go to bed. This is not, however, what you have spent all day dreaming it will be. You toss and turn and have nightmares for hours and hours, until your alarm goes off and the whole fucking cycle starts again.

Try to image what this might be like to live with every day, always knowing that this is what your life will look like forever. The best case scenario is that you don’t get any worse, but that is a pretty shitty best case. The pain and despair do not get any easier to deal with; if anything they get more difficult with time. There is no end in sight, just an eternity of suffering, like some twisted punishment for a crime you never committed.

Here’s the thing: my life sucks, in a multitude of ways, but it is my life. I demand the right to spend it how I choose. My body is falling apart, crumbling around me, but it is my body and I will do with it what I will. I will stitch myself back together in the way that makes most sense to me, with love and ink and laughter and good food. I will live my life, even though death seems easier, and living will be an act of rebellion.