Together (Burning)
I’m sitting at my computer mid-way through a weekly 1:1 with my Boss. My single bed is blurred out behind me, anime posters conveniently out of sight of the webcam. Outside, the bustle of Crown Heights faintly leaks through my room’s window and into the microphone before an algorithm designed by someone in Silicon Valley filters it out. We’re nearing the end of the meeting. I smile and nod as my boss tells me about his weekend. I am a ball of rage.
“Yeah so, how have you been feeling lately? That thing still bugging you?” My boss asks.
My face hurts, a gentle burning. My feet and hands feel like they were rubbed with hot coals, each cell is screaming. My body shouts: Your left leg! It’s been flayed! By now I know that it’s okay and ignore it. Hooked up to my back is an electrotherapy device to counteract the sensation that each shoulder blade is trying to tear through my skin, similar to that famous scene in Alien.
“A definite improvement! Feeling a lot better and I’m really staying on top of my work!” I lie.
“Good to hear, and at least it’s not COVID,” He replies cheerfully. My ball of rage flares. That fucking piece of fucking shit, I wish he would experience at least 10 percent of this. “Yeah, thank god it’s not COVID,” I respond. We finish up our 1:1. My work is suffering, but less than before.
After the meeting, my anger still doesn’t subside. This feeling has grown in parallel with my dosage: 100mg, 300mg, 400mg three times a day, 600mg three times a day, 800mg three times a day. Hope and perseverance has been beat down into despair, and increasingly the despair is turning into a different, more primal emotion. The pain won, and it’s occupying me.
I get a text, “A new test result is available on your MyConnect portal.” My hands shake as I log onto the hospital website. The biopsy result: “Small nerve fibers are below the threshold that indicates evidence of thinning.” My nerves have spontaneously become thinner and more sensitive. Normal sensations are now misregistered as pain. Small fiber neuropathy. A symptom, not a diagnosis, but it’s a confirmed symptom. I imagined this moment would be a relief, that the doctor would tell me: “Now that we know what it is, we can treat it!” Instead, my last stupid hope dies. The hope that I would wake up pain free, suddenly healthy. My nerve fibers sure aren’t going to magically un-thin themselves are they? What’s going to happen to me?
My Dad is my best friend, the one person I haven’t completely alienated through months of illness. He is stronger than me, more social, and always more optimistic. He’s the one person I can call, but I know how our meeting will go: I’ll lash out at everything and everyone. Trying to assign fault for an illness that’s no more than bad luck.
“I got my test results back, it’s small fiber neuropathy.” I say after he picks up. “I’m not sure what I’m going to do.”
“Well, now you know what it is, that’s something, right? There’s next steps,” he says. “We’ll find a specialist.”
I’ve seen specialists. Rheumatologists, neurologists, even a curiously baffled pain-management specialist. 3 MRIs (spine twice, brain once), almost a hundred tests. There’s no “path” forward. That doesn’t get across exactly what I want to say. So I sum it up, my pain-addled brain composing a statement built to hurt the person I love the most.
“I’m fucked,” I say. “Completely and absolutely fucked.”
“I’m not doing this again, I’m coming over,” my dad responds. He lives about a 10 minute walk away. When he arrives I’m curled up in bed. Every cell in my body burns. He sits on my bed and sighs. He sits there awhile, his head in his hands.
“I don’t know what I’m going to do,” I whisper.
“We’ll figure it out. We’ll figure something out,” he says again.
“I have no future.” I turn away from him.
My Dad starts to cry. This thing hasn’t just ruined my life, it’s ruining his too. Over my months of appointments and ER visits he was beginning to look more tired, more ragged.
“Get up,” he says. I don’t move, I just look at him.
He reaches his fist back as if to hit me, but he stops himself. He’s tried everything to help me, but some strategies he won’t ever attempt. Instead, he paces around my room, before getting on his knees beside my bed.
“Please get up, please, I’m begging you,” my dad says. “I don’t know how to snap you out of this.”
I want to lash out, say something awful that I can’t take back. Something stops me. My dad looks fragile, reduced. The anger, the despair, the powerlessness, and the uncertainty. He felt it as well. Maybe even more acutely than I do. I climb out of the bed, each cell still singing with pain. We are the same; imperfect fragile people trying to navigate an impossible situation.
I cry too. Then we walk down the block, get dinner, and talk about the future.