I am going on my fourth year of living in chronic pain, and I can’t quite seem to understand how I’ve done it. I could tell you a few, practical reasons like my mother bringing me food in bed, doctors plunging needles into my muscles, medications that have just pickled my body into a state of obedience, alternative methods that have given me hope. That all makes sense. I know the steps I’ve taken to keep my body alive, and somewhat functioning, until the next season.
But mentally, I really have no idea.
A few weeks ago, I curbed my car during a freak blizzard on my way to work. I was going nineteen miles an hour and managed to pick up the momentum of the curve in the street just enough to slam me into the curb. I couldn’t tell you what happened in the moments before the collision. I just remember saying “no, no, no” and trying to viciously pull my wheel in the other direction. But the second you realize you have no control over the events that follow, there’s no point in saying or doing anything.
That’s what I feel like with my condition at this point. I am a sliding car with no idea if I’m going to straighten my wheel out and get down the hill, or collide into a curb and ruin my front alignment. I can’t even tell you I feel like I’m in the front seat. My consciousness is in a booster seat, cradled in the center back. I have a clear vision of the driver, the passenger, and the road ahead. I’m just not a part of controlling the journey.
There are some days where I can cruise around the streets of my city without a second thought. My playlists feel profound and perfectly curated to my thoughts. The day feels lovely and bursting with possibility. I speak softer and listen more. These easy days are typically the ones I write about. The ones where I can make my pain seem like this moral teacher that makes me a stronger, deeper person. Where I can take a bucket of dirt, and show you the pearl.
Those days are often few and far between. Most days, I can’t even pull out of my driveway without hitting a curb. I can’t wake up without feeling the same, familiar throbbing and wanting to cry. I can’t wash my face without feeling soreness in my cheeks and temples. I can’t brush my hair without feeling my neuralgia scream at me from the inside out. I can’t eat without immediately wanting to throw it up. I can’t breathe without being reminded of the absolute car wreck that I am trying to drive around.
I think in these last few months before I turn eighteen, I am falling into an even worse pit of depression. For years, I have been told that there is a possibility that my pain will disappear at the golden age. After all, when you’re told that your illness is just a mishap in puberty, a blip in hormonal control, it is natural to set a goal to be better in a few years. Those years were full of discovering all the different mechanics that make up my beat-up car. How the pain isn’t just hormonal. It’s also the AC that doesn’t work. The bumper sticker that will scratch the paint up. The check engine light that is always on. The tires that have never been equipped for winter weather. There are so many broken gears that contribute to the fact that I can’t stop curbing my car, and I’ve never wanted anything more in my life to be able to point to one cause to blame.
If I had one broken headlight, I could tell people that it is hard for me to see completely in the dark and that is why my alignment is always off. I’d be able to blame it all on that one light. Ideally, people would shut up and accept that answer, but we all know someone would tell me to ‘just replace the lightbulb’.
If only it were that simple.
With every new doctor referral and treatment option, I feel my car breaking down even more. She is a tired, old whip that needs a good car wash, but I keep running her on the highway and praying she doesn’t break down. I pump the cheapest gasoline into her and wonder why the mileage is so poor. I slap stickers on her to make her more appealing, knowing full and well that there is not much room in her space to share. But she is tired. And she often just stops when she wants to.
I have to let her stop, and I am learning how to find joy in those pauses. They give me an excuse to listen to three-hour podcasts about LSD or musicians. Even though I’m better at knowing when to hit the breaks, I’m still awful at warning others when they’re about to get whiplash. I find it increasingly more difficult to tell people I am in pain as I grow older because I cannot stand the way they look at me. That stare hurts more than any condition ever will.
I don’t like hurting people, and my mere existence does precisely that.
I hate that the people I love most in this world have seen me suffer in ways that have probably shaped their entire perception of me. I hate that my mother has found me unconscious and has held me as I pass out in showers. I hate that my father has to exchange ice packs every few hours when I’m in bed. I hate that my best friend has had to worry about if I am alive some days. I hate that my grandmother has been spending the last few years of her life worrying about if the little girl who used to read books under her desk is still in pain. I hate that doctors apologize to me at every appointment. I hate that my ex-boyfriends see me as a charity case. I hate that the only thing family friends know about me is my condition. I hate that my uncontrollable car not only crashes into curbs, but also people.
I navigate my streets very carefully, and I periodically pick up hitchhikers. Some end up scratching my paint even more, but once in awhile, I’ll find a passenger who knows a thing or two about cars. They’ll show me how to check my oil properly and how to jump my battery when it dies. That is the only reason I keep quiet in the back seat and watch myself crash and rebuild. One day, with enough knowledge about my car and enough tools to keep parts of it operating, I will climb over the center console and take hold of the wheel. I have every reason to believe that day will never come, but I’ve got a lot of miles behind me, and plenty more to go.