“But when the melancholy fit shall fall
Sudden from heaven like a weeping cloud . . . .”
-John Keats, Ode on Melancholy*
I’ve lived through the worst RA pain of my life in the past four weeks, which is saying something after 33 years of this disease. It’s been a month of pain that wakes me up in the middle of the night. Pain that generates beads of nervous sweat that drip down the middle of my back. Pain that pulses through my joints each time my heart beats, spreading like poison throughout my body, reaching deeper into the places that were previously safe.
I’ve told you about how bad the pain is, so at this point in the essay I should start having an epiphany. My pain has brought me closer to God, perhaps. My pain has made me grateful for everything else in my life that’s, now that I think about it, pretty great. Maybe my pain is interesting. How curious, pain, that you now reach my wrist when you once stopped at my elbow. My pain has made me look at that lone purple flower growing in the concrete by the interstate exit and helped me appreciate small miracles.
This isn’t that kind of story. I see only grays. The purple flowers are dead to me, and I have nothing positive to report about my pain journey.
Lots of negatives, though. The truth is unpleasant.
Pain makes me ugly. For the past month I’ve been surviving RA without my biologics—nothing but five milligrams of prednisone to get me through twenty-four hours. Without my full medication cocktail I’m conspicuous. I’m limping and dragging, so hobbled that I look like someone who fell down or got hit by a car. People stare, trying to decide if I need help. Others see me coming and step out of my way, choosing to pretend I’m not actually there. Many grimace. I am the sight that spoils your sunny day.
Pain makes me crass. I’m wincing when I walk as though I’m stepping on hot coals. I try to do this silently but I’ve been inadvertently dropping the occasional “SHIT!” and “FUCK!” in parking lots and hallways, in line at Walgreens and in the kitchen in the early morning when I’m pouring milk on my cereal. I like the drawn out obscenities, like “MOTHERFUCKING BULLSHIT,” that let me stretch my despair over as many syllables as I need.
Pain makes me angry. I had to stop taking Enbrel so that I could be temporarily less immuno-suppressed and able to tolerate the MMR vaccine, which I never had when I was little. I hate everyone who didn’t vaccinate their child. You, reading this? Yes, you. I probably hate you too. You able-bodied SOB.
What was I saying? Oh yeah, pain. It makes me distracted. I finally understand brain fog. My pain is disorienting. I know where I am but I can’t bring myself to do anything but get through the pain. I curl up on the couch. I nap. I stare at the ceiling. I hold my phone and consider the glistening apple logo on its back because I forgot what I was about to look up. Pain is all my brain can handle.
Pain makes me helpless. My doctor’s advice was to “take it easy.” I tried. I exercised less. I slept more. I let my husband fold my laundry.
But many things got harder. My knees’ range of motion is destroyed. I wake up every morning with no idea if I’ll be able to stand. My knees are so swollen that my legs bend far short of a straight line. So when I thrust myself upright I look like I’m stuck in an evolutionary pause, a few steps shy of Homo sapiens, my arms within reach of the ground but maybe not the sky. I’m in a perpetual squat. Can you imagine moving in that position? I had to will one leg in front of the other. I had to steady myself with my arms.
To sit down, I have to land on my ass, ideally on a surface cushioned enough to break my fall. Getting up is an endurance challenge. I have been asking my arms to heave my body weight forward so that I can get onto my knees, which on their own serve no use in getting me from sitting to standing. Bathrooms are exhausting and humiliating.
Of course, this now means that my wrists and my shoulders are sore. I’ve asked too much of them. And my hips are sore too—not every landing has been cushioned. The force of the fall goes straight to my hips.
There were moments of relief, those hours of electric, twitchy energy when the prednisone was kicking in. I tried to switch up the time I took my steroids so that I’d hit the peak when I was at work, when I needed to get around on my own. This worked some days and then it just didn’t work that well anymore, as though my body was sucking up the drug faster and faster. But even when the pain subsided it only did so for a short window of time, and soon enough I’d feel the pain creeping back.
Those are the worst moments. The pain has gone away and you can feel it coming back. You know the vacation is about to be over. That’s the moment I feel like giving up and getting fat and never leaving the couch.
What’s the point, is what I feel. I don’t feel grateful and I see no silver linings. I’m back on Enbrel now and all I feel is scared. Will the pain return? Will this medicine work?
I force no happy ending on myself or my story. I can’t gloss over my reality for the sake of those around me. The only certainty I have is in the truth of my pain. You may help me solve it you know its full extent.
Join me in my despair, will you?
*In Ode On Melancholy, Keats advises us to embrace our sorrow and our pain. When melancholy approaches, you stand in its path and let yourself be drenched.