It’s a strange thing not being able to trust your own body.
I am, right now, as I type this, supposed to be driving through the Mojave Desert. I should be halfway through a three-day sojourn to a routine transplant clinic check-up in Palo Alto, stopped at one of the abandoned mining towns along the way, shoveling shitty scrambled eggs into my face while staring at a broken-down mechanic’s garage.
Instead, I’m at home, at my computer, on antibiotics for a respiratory infection I didn’t know I had and awaiting a second MRI because – wait for it – wait – because my brain juice might be leaking out of my spine. But it’s OK because dry brain isn’t actually that big of a deal somehow.
So, first off: I’m fine and I will continue to be fine. I am apparently already living through the worst-case scenario – frequent and uncomfortable headaches – and it’s honestly not that bad against the scale of all the other bad I’ve been through. Officially, I’m suffering from spontaneous intracranial hypotension, a fairly rare problem – especially for someone who never had spinal surgery – but one that nonetheless has a fairly easy fix, the extremely metal \m/ epidural blood patch \m/.
I’ve always had migraines, but, starting in February, my headaches got bad enough and frequent enough and mutable enough that my doctor became concerned. She scanned my head with magnets and found out that my brain is sagging a little, dipping down like everyone’s pants in the ‘90s. This happens when there’s not enough cerebrospinal fluid in the skull to keep the brain afloat, and the most common cause is because the spine has sprung a leak. Hence the second MRI, for confirmation and location. Then, once the leak is found, blood will be removed from my veins and squeezed into my epidural space/sac to congeal and plug-up the leak in a way I have yet to have adequately explained to me.
It’s weird and not nothing, but it’s all pretty straightforward, a completely normal amount of abnormal. Maybe. Probably.
To be clear, I’ve been given absolutely no reason not to believe the above. There is, unequivocally, no tumor, no problem with my brain other than it being a little parched and lopsided. All signs and symptoms point to a singular cause with a singular fix – a quick and easy procedure with a 95% success rate.
But, again, probably.
The last time I had a pseudomonas infection – a couple years back, in pre-pandemic times – I damn well knew I was sick. I was sluggish and coughing for the first time in years; I felt like shit, generally. A round of antibiotics and a couple injections of steroids knocked the infection out, but not before it did some damage.
Pseudomonas is a bacterial infection, mostly benign as far as these things go. It’s an almost nonexistent problem for healthies, but a constant, existential threat to immunocompromised people like me. You can be exposed to it anywhere, but it’s especially of concern in medical settings, hospitals and old folks’ homes and the like.
I got that particular bout of pseudomonas from the gym. The irony has haunted my every waking moment ever since: I finally started working out, finally started to noticeably increase my lung function and overall health, and, almost immediately, I got sick and my lungs got scarred and my ability to breathe was permanently knocked down a tick. I did a Good Thing but only a Bad Thing happened.
I don’t know where or how or when I got pseudomonas this time. I rarely go out, I wear a mask constantly, and I’ve had absolutely zero symptoms. The antibiotics I’ve been prescribed feel more preventative than anything; in fact, the entire conversation about the infection was an afterthought, a quick little postscript to the whole you’ve got a weirdly dry brain thing.
Which brings me back to probably. You’d think that, if the same body was infected by the same bacteria – if the same secondhand lungs were colonized by the same pathogen – that the results would be at least a little similar. But this time, right now – at home, at my computer, on antibiotics – I’m only today starting to feel the tiniest bit rundown, and that’s as much the side effects of the ciprofloxacin as anything.
I know there are different strains, and maybe this pseudomonas was caught earlier, or any or all of a million other minute factors, but the starkness of the contrast feels notable. Probably. Maybe.
Because the thing about those words, about probably and maybe, is that there’s an entire multiverse in the margins. The thing that should be – the diagnosis, the theory, the hope – and the infinite possibility of everything else.
And I live in that infinite possibility, that infinite improbability. My body is a vast and angry cosmos, an impossibly roiling ocean of stuttering stars and exploding suns, of satellites and spacecraft and celestial beings. An entire universe of unlikely odds and inconceivable chance.
I had, for a while, two lumps on my back; I was assured, over and over, that they were both harmless lipomas. They were not. One ended up being a cyst (and an abscess), while the other was a schwannoma, a type of (benign) tumor so rare my now-retired doctor could not recognize it as she cut it out of me. Which, for the record: “What am I looking at?” is not what you want to hear while you’re lying on your stomach getting your skin scissored open.
When I had my transplant, I was told there was a minor, minor chance I’d lose my sense of smell; I haven’t been able to smell anything since. Diet soda seems to embolden my crippling headaches; sucralose is not a known migraine trigger, and I was fine with my Zero Sugar Mountain Dew for months before it became a problem. A few months ago, I was stricken by a rash on both of my arms, red and itchy, an allergic reaction with no discoverable culprit, no matter what I ate or didn’t; turns out my skin was just catastrophically dry. Cystic fibrosis is the literal definition of a rare disease. And, of course, needing, getting, and surviving almost ten years with a double lung transplant is an absurdly small likelihood, statistically speaking.
Because, behind the ethereal veil of being, in the misty workshops of pre-existence, someone, some thing, sat down at a console and set to building their character – building me – and, scrolling through a million options, a million things that made sense, they hit the randomize button instead. They chose chaos as their creation.
It’s a strange thing, not being able to trust your own body. Because if you can’t trust in yourself – if you can’t trust in literally your own physical being, the flesh and blood and bones that keep you corporeal, that define you as alive – then it becomes difficult to trust in anything. And, as a result, you become intimately aware of the ephemerality of existence, of the pandemonium that accompanies every sunrise.
Of the sheer unlikelihood of everything.
Just west of the New Mexico/Arizona border – an entire state away from the diner/gas station/abandoned mining town where I should’ve had brunch today – there’s an old amusement park/pancake house/curio stand called Fort Courage. Faded and broken billboards advertising the attraction line both sides of the highway for miles.
The property, among countless other attempts at commerce, is an unlicensed facsimile of the set of F Troop, a television series from the late 1960s. The show only ran for two seasons; the roadside attraction seems to have lasted longer, for a couple of years in the ‘70s and ‘80s. Precious little else is known, and I am, in fact, one of the foremost experts on the subject.
And yet, to this day, that weird fort/pancake house hybrid still stands, empty and abandoned. (Or, at least, mostly empty; I’m pretty sure someone’s living inside.) The rest of I-40 is littered with similar roadside stands, with collapsing trading posts and haunted campsites and entire abandoned towns, the skeletal remains of Route 66 all that’s left of the once-mighty highway. The remnants of an impossible, inevitable economic ecosystem that has never once been replicated.
I’ve always had a strange fascination with Route 66 for reasons that – until I sat down and started writing this – I couldn’t explain. Why should some highway, one singularly unique moment in American history, resonate with me? Why do the immortal ruins of an improbable infrastructure – a system sprung from chaos and change, from want and whim in equal measure, fighting against the dust and desolation of the desert – mean something to me?
It’s a strange thing not being able to trust your own body. To have internalized doubt and skepticism to the point that, when your doctor tells you what to expect, you start instinctively preparing for something else. Not something bad, just different. To know, in your heart and soul, that whatever’s supposed to happen, won’t. To feel alienated by your own flesh and blood and bone, to feel utterly alone in a world that doesn’t seem to make sense.
It’s a strange thing not being able to trust your own body – but trust isn’t everything. Trust will only get you so far. Trust is how you get hurt. How you throw yourself utterly into a future that won’t exist, how you brace for the 95% and get blindside by the 5%. Trust is how highways rise and fall and leave nothing but ruins blooming in their wake.
Because supposed to is a curse as much as a promise.
Because if nothing matters, then anything can.
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