You may not control all the events that happen to you, but you can decide not to be reduced by them.
- Maya Angelou
You know there’s a problem with your life when you identify more with the horror novel you’re reading than with your peers.
House of Leaves. It’s this wild book about a photojournalist who moves into a country house with his family and wakes up to find a door leading to a bottomless labyrinth of pitch darkness that he ultimately loses everything to, and once inside, never really comes back from.
And so Liam and I are reading this and I think - Huh. Sounds like my life… Uh oh.
My chronic pain came back just like that door. Overnight, with no warning, and over a year later I’m still fighting an uphill battle.
The first thing I do when I wake up is push my major organs back into place so that I can kind of eat, and kind of breathe, and kind of do all I need to do to be a kind of person. The rest of the day I spend white-knuckling my way through life.
Consider all the little things that’re so simple to the beats of your day, nothing but mindless reflexes.
Opening the refrigerator, your front door, the car door, bending down to pick up something you dropped, filling the tea kettle, tying your shoes, wearing pants, texting your mom, walking your dog, driving at all, carrying groceries, closing the cap on your chapstick, walking, eating, breathing, laughing, crying. Having emotions of any kind, because that wad of tension that coils up like an animal in the pit of the body when things like anger, sadness, or excitement bubble up is inconsequential for most, but excruciating for someone who’s organs don’t work right.
Thus, 'it's fine' becomes a survival tactic. Numbing out becomes default.
And you don’t know how to talk about it or even who you’d talk to if you did, because what the hell are you supposed to say? That you started looking into medically assisted suicide? Fantasize about stepping out into traffic? Would do anything, anything to just be able to give up?
Last time you talked like that, they locked you up.
So you white-knuckle on and watch through the glass while your friends, as they should, move on with their lives - breathing, laughing, and opening the refrigerator.
They say life isn’t fair, and listen, I never expected it to be, but I think it is fair to ask - does it really have to be this demented? Thousands of dollars, years, spent learning to reclaim your life only to discover the one body you have to live it in gave out somewhere along the line and all of those things you learned to allow yourself like eating and laughing now bring you physical pain.
Welcome to the other side where the grass is always greener and your body makes you a passive observer in your own life! Oh, and you’ll get to spend more years and thousands more dollars getting every scan, test, poke, and prod under the Great American Healthcare System sun! And what will you learn? You’ll learn that there is no diagnosis that coincides with your experience so you must be insane and/or a danger to The System and/or someone else’s problem, and ultimately, the Great American Healthcare System doesn’t give a dime about you, but they would appreciate it if you’d pay up for all the lovely non-answers and medically-assisted abuse you’ve been provided with before they toss you to collections.
I got one good year. Thanks to my incredible physical therapist with a roster of clients who have similar stories, broken organs - and still - no diagnosis.
Is it wrong of me to want more? To feel owed more?
I casually told someone recently that I wasn’t a ‘loving’ person. It’s been bothering me ever since. I keep asking myself - Woof. When did that happen?
I reckon I spent too much time in the dark, being silently tortured by my own body, and gradually people’s love lives, drama, and material troubles started to look more like a privilege than something I could empathize with. When people don’t realize that shallow drama being the biggest source of pain in their lives is a gift.
At this point you might be wondering why I’m writing all this? Yeah, me too. My soap box is definately a multipack and (oops!) my cynicism is showing. I’d apologize, but that’s something I’m actively trying to do less of these days so I guess… I’m writing to prove something to no one but myself.
That maybe using my voice will remind me that I have one, and more than anything - even more than needing all the pain to stop - I need to feel like I had the power to make it all count for something.
This is me working on that.
And maybe if my happy ending isn’t meant for me yet, but for someone else who’s lost in their own dark house of bottomless hallways and dead ends to read this and feel a little less alone in there, to feel seen, that can be enough. To my friends battling your own bodies, your own brains, and a System that seems to provide you with nothing but crippling bills. You are not alone. You are not small.
This is me extending the flashlight.
And maybe my voiceless hiatus is excused by the fact that the hardest thing about trying is the room it leaves for disappointment.
This is me trying.
Getting out of bed, every damn day, and pushing my organs into place first thing. Meeting the day when I know it’s going to hurt the whole way through and that I’ll push my stupid organs back into place several times before the day is over. Writing into the void here like there’s some kind of point, which there can be, if we remember that at it’s root ‘trying’ means ‘not giving up’.
And that that tiny, impossible flicker deep in the dark maze of my life might be the part of my life that still belongs to me. That might be me - buried in those fleeting moments, when the faint gleams of light trickle down through the cracks in the walls, reaching for it with my fingertips, and believing that there could truly be something out there - something brighter, something worth it - on the other side.
