In most trauma narratives, there seems to be a before and after: after the fire, before the diagnosis, after the accident. Generally speaking, although there is definitely room to quibble, my dad was alive, and then he was dead. The before is characterized by a taken-for-granted expansiveness, where there is room to be annoyed with your dad’s obsessive insistence that you charge your phone before traveling, even room to hopefully decline his offer to go for a fall drive as his mental health declines, making him intolerable to be around. (You hope there will always be a chance to do this.) The after is characterized by a finitude, in which you learn to change your verb tenses (he was such a good trumpet player), or you hold on to the funny thought instead of texting it. The brain struggles to catch up (and it never fully will), but it’s hard to argue with a casket.
In some cases, though, it’s hard to tell when the world fell apart. For the past six months, I’ve been dealing with a set of complex, murky health issues that no single doctor has been able to pin down. I have partial diagnoses but no whole treatments and a body, terrifyingly, doing things that science doesn’t seem able to entirely explain — at least not yet. Problematically, my symptoms are, at times, severe, yet non-specific, which has caused many doctors in Germany (where I lived when this all started) to classify my suffering as psychosomatic. By being not easily explained, you become, over time, inexplicable. Then, you begin to feel a bit made up, like you are starting to disappear. (This might explain, in part, why I’ve been so drawn to the Harry Potter books lately. Harry is basically constantly traumatized, and most of the time, none of the literal witches and wizards around him seem to be able to tell him why he is experiencing what he’s experiencing. Scar hurts, Harry? That’s weird. Hearing voices? Definitely not normal. Having murder-y lucid dreams? Er, try not to do that.) While I could tell you the last time I drank coffee and hiked without knowing that having those things in an uncomplicated way would soon become unavailable to me, my current circumstances feel much more like a long terrible middle than anything else.
But like other traumas, this one has shredded my illusions of control, especially bodily control. For so long, I thought of my body as a troublesome sack of flesh and bones to dominate, and I tried to exert as much control over it as possible. I remember one day in college naively thinking, “I can make my body into whatever I want it to be,” and I bought running clothes and running shoes and started running. When complex lower back pain came on a few years later and running was no longer an option, I was troubled, but over time learned to adjust, leaning into biking, swimming, hiking, weight lifting – whatever I could do to ply my body into delivering all the right chemicals. (Beyond the chemicals, there’s nothing quite like the perceived virtue of being fit, not only because it is aesthetically pleasing but also because you’re seen as having earned it, and you are rewarded for that.) I admired my ability to do practical things, like carry lots of groceries, and impractical things, like lift my bike above my head. When I got the news that my dad had died, one of the first things I did was to go swimming, needing to change how I felt in the quickest way I knew how.
Now, my body changes, sometimes drastically, from day to day, and despite the many medications I take to effect a certain outcome, I ultimately seem to control only about 5% of what it does. Illustratively, I am so bloated that I finally caved to buying maternity leggings, and the only exercise I can do is limited to what will not elevate my heart rate, which, frankly, has me in a perpetual state of rage. I have visions of casually flinging heavy things out of windows – televisions, coffee tables – like they’re frisbees. Other times I imagine myself reaching deep into the cracking ground, pulling something out of it, and thrusting it towards the sky, as if the only way out of this is to argue with God, in the tradition of Jacob, or Emily Dickinson.
It seems sometimes like this ambiguous bodily grind might even be too mundane for something as profound and eternal as God. In a talk with David Brooks, in response to a question about God’s presence throughout her cancer diagnosis and treatment, the writer and historian Kate Bowler mentioned wanting to find a “chronic faith” versus a “crisis faith.” This struck a chord. Faith in a crisis seems somehow easier than faith in the midst of a chronic condition. In crisis, your world implodes, and God is the only thing that remains. Indeed, something about the crackling, ground-splitting horror of my dad’s death made me feel closer to God — or, in my deep despair, God pulled me closer to Him. Truly, the world felt so broken and apocalyptically brand-new, that I thought I should die, but some other voice whispered: “This is a thing that can happen. This is a part of life as much as coffee spoons.” Whatever I’m in now just honestly seems dumb. Really, really dumb. I eat a bite of tomato, and my blood pressure plummets. I ride my bike for five minutes and feel like I’m going to vomit and pass out. I take medication that has been prescribed to me and have a debilitating reaction. The doctor notes that I sweat excessively. I rub my traumatized stomach, which my husband and I refer to (for whatever reason) as “little scorcher,” and wonder if I am ever going to deflate.
I mean, it’s fine, I’m not dying, but it’s also kind of bullshit.
I want a God who has time for us all, not just those closest to death, a God who is far less cryptic and exacting than I imagine Him to be. Maybe, above all, I just want a God who, like a hot television doctor, will gaze lovingly upon me and fix all my problems. At the end of hard days, I pray desperately that the morning will be different, and when it is, even just a little bit, I imagine God as an Oprah- or Zeus-like deity, making shit happen behind the scenes, bargaining with devils and angels to get me the lowest price possible.
What role does God play in this in-between space, where nothing and everything happens? What is the point of this place where I feel so uncomfortable that I can hardly think straight? Am I supposed to be “growing into this,” rather than yearning for anything but?
The one neutral review I’ll write for having a mysterious and only partially diagnosed health condition is that it causes you to really lower your standards. And once you lower standards, you are able to enjoy many more things. Sitting, without pain? Fantastic. Lying down, without pain? Five stars.
In all seriousness, I have experienced the briefest blips of excruciating happiness over the past few months that make me wonder if one could string a life together from these tiny lights alone (although I will deny this on any tossed-out-to-sea, bedridden day). It’s honestly a kind of delirium more than anything — the delirium of having a few good days followed by a few bad ones, and never knowing what to expect, so that literally anything is possible, and everything becomes a surprise. It’s the kind of slap-happy delirium that makes you think, maybe I should get a tattoo on my upper ear, or maybe I should go on a quest for Germany’s best baked potato. But most days, I am in the slog, swimming through mud, and it takes great effort to imagine God here. I wonder if God is really down-to-earth enough to be present for all of this, and then I laugh at this turn-of-phrase, remembering that Heaven came down and Christ used mud to heal.
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Hi Sarah a friend posted this to her Insta. Myself and a close friend have been going through similar mystery illness for about a year. The best relief we have found has been from a dr dorninger in boulder. He treats remote, specializes in mystery illness and has brought my friend and I back from
The brink (she and I both being treated for CIRS from water damaged buildings). He takes forever to get sn appointment with, but did a more complete analysis and testing than Mayo and any of the other 20 drs I saw combined.