A Metaphorical Mindset of the Chronically Ill Body

The only tool I was given in this life to make people understand are my words. I wish they felt like enough, but often I am still disappointed in the limitations of their reach. Still, I keep trying. I know no other way. So I will use metaphors to reflect my many years of chronic pain, because that’s what we all do in the art of trying to relate or explain. 

I will tell you that some kinds of dissociation are like looking through a perpetually foggy window—the view (and the sentiments surrounding the view) are rarely clear. But when the fog occasionally does lift, even a little bit, and you remember what it was like to see (feel), you’d do anything to hold onto it. Unfortunately, loss wins every time, because you know the fog will return. You know you have no control over your window (the experience of life fully and presently). Depersonalization and Derealization Disorder. So you try to look away. 

Not just from the fog and the emptiness it creates, but the light. Because sometimes when it burns too bright through the glass, you can’t stand it. You have to pull the curtains, close your doors, lock yourself in your bathroom for a few days. Everything bloated and intense, like another stomach feeding into yours until it begs to burst. But it can’t. It’s defined by the barriers of your body. So the too-much-ness finds its way into your blood, your nervous system, then out of your eyes and your mouth. Tears. Screams. It paralyzes you against your will. Surrender becomes survival. Lie down. Digest. Mourn. Individuate. Pray you can open the curtains soon. All the way cradling a clinical explanation: hypoarousal, or nervous system shut down. You aren’t crazy. There is no cure. 

Poor posture feels like walking around with a backpack pressing into your shoulders—something so within reach of relief, but you can’t take it off and can’t correct the pain without crack, crack, cracking your bones. It’s a part of you, this impropriety of the body, and you have to learn to tolerate it, adjust all your movements so that you almost don’t notice it—the shape of you, disfigured and out of alignment. The epicenter? Cervical instability. 

An overbite and a popping jaw feel like a rubber band snapping in your head every few minutes. Snap, snap, snap. You might not make matters any better by participating in the act. Maybe you could talk less, keep your mouth closed, take deeper breaths. But it wouldn’t change the fact that there’s something fundamentally at odds inside your head, and you can feel it in every waking moment. A seemingly innocuous diagnosis: Temporomandibular Joint Disorder, but one bone can cause an ungodly cascade of side effects. 

Because of all this—the window and the stomach and the backpack and the rubber band—it’s harder to breathe. The oxygen seems stuck on its way to your heart and brain. Like a clogged pipe, you have to give it one big push to reach either organ. And you can’t be inhaling this deeply every second of every day; it’s too conscious and effort-filled an act. Being alive is exerting enough. Maybe in time, with the right exercises and adjustments, you’ll be able to fix it. Maybe in time you will breathe with no effort at all, the way you used to when you were young. Healthy heart coherence. 

Ringing in the ears is a song you can never turn off. Loudest when it’s quiet and ironically only drowned out by other songs. Thankfully, there’s plenty of those, but it doesn’t change the fact that you miss silence. When you’re alone in your room, or out in the desert late at night, you find yourself in mourning. You remember when it was possible to hear the whole world happening outside you, how infinite and one it made you with everything. Now, you are forced inward by that ever-constant ringing—reminded you are human, not a deity. There is no overcoming this sound, like a friend, like an enemy, gripping your hand. So you wear headphones and play white noise to fall asleep. Tinnitus. You dream of a silence you once knew, but strangely, even your dreams are trapped behind foggy windows. 

Cruel that you were left with no single way out of yourself. 

If there could not be an escape in feeling present, feeling fully alive, then at least there could be the joys of smell and taste, but you mostly lost those, too. Years ago from COVID. And so your nose is like a defunct appendage, similar to an appendix. It just sits there. The virus took these simple pleasures, ones so rarely lost, and now you only have the phantom whiffs of peanut butter and sea spray and sunscreen: all these miracles of life promised to every other human body. Anosmia. There is no cure, but you’ve tried every version of one. 

Where went your promise? Why was it taken so young? Left to wonder: is there any way to resurrect bodily normalcy, anything that can be done?

Hardly. You’ve searched for answers in every person and doctor you meet. Please be the one to relieve me, you plead over and over to a blur of stoic faces. Please make it easier to think and feel and be. 

But no one can do it. I’m sorry, they say. We have yet to figure out how to clear foggy windows inside the mind. Maybe you can try this technique, this method of breathing, so you feel a little more alive. But we don’t know how to turn off the song, or return the ocean back to the nose blind. We can try to remove the backpack, sculpt your spine into something resembling peace, and we can cut the rubber bands in your skull, but we can’t promise relief. We can’t promise anything. 

What they don’t say: I know we don’t know it ourselves, this pain of yours. We can’t even see it without a machine or a stack of questionnaires. Sometimes we look past the hurt in your eyes, how the hardest part about all of this isn’t the experience, but that you have to pretend not to experience it. Everywhere you go and with everyone you meet, you have to present as normal, happy, pain-free. Every moment of every day. On repeat. On repeat. Until you feel like a garbage bag, filled up and tossed out into a giant heap. What a waste it seems, to try to be better. To try to be alive. When you end up in the same exact place every time. All alone, trying to make sense of yourself, trying to explain it to everyone else. 

Still, there’s something in you that can’t be put to sleep. This yearning to get past it all, to be an inspiration, to achieve. If you didn’t have this extra gas, you think you’d still be driving. You daydream often about the destination, another metaphor: into the sunrise. Where all would be well again. But you’ve never cared much for the journey. All the pit stops and pain along the way. You want it to be over. You want to arrive. 

It doesn’t seem fair, you think, that you’d have to drive this long to survive. But you do. We all do, in some form or another. Because we all got our own metaphors, and they take awhile to own. Maybe there is no life with a clear view, a peaceful spine, a dose of silence on a clear desert night. But there’s still a life, and it has to be lived. Maybe that once seemed like a choice, too, but it’s not. 

Sometimes when I can’t think of what to write, I revisit what others have written before me. In one of my favorite songs, the rapper sings: “all we need is two good wheels / got gas in the tank and cash in the bank.” 

So I think it’s just as much about your mindset as the metaphors. And it’s important to choose good ones.