Let me set the scene. It’s Friday morning. I’ve just used the bathroom, a perfectly ordinary human activity, except now I’m standing there wondering why my body has decided to add a little encore. A few uninvited drops. No reason. No warning. Just my nervous system freelancing.
Welcome to my life, where even the most mundane bodily functions have become a neurological adventure.
That was Friday morning. By Friday night, I had a severe ache digging into the left side of my eye socket like someone had parked a Buick behind my face. I took two Advil and went to sleep like a reasonable person. A hero, even. At 2:45 a.m., I was awakened by what I can only describe as my body filing a formal complaint with management. Not quite nausea. Not quite dizziness. More like my stomach and my inner ear had called a joint emergency meeting and didn’t invite the rest of me. I genuinely thought: this is it. This is how it ends. Not fighting a villain. Standing in the dark next to my bathroom at 2:45 in the morning.
I took a clonazepam and an ondansetron, because apparently I’ve become the kind of person who has a 2:45 a.m. protocol. And it worked. I went back to sleep. Superman lives to save another day.
But here’s the thing they don’t tell you about being Superman: the cape gets heavy.
“Is this normal, or just another nerve issue?” I asked my doctor. “It’s always been a nerve issue. And it’s always going to be a nerve.”
A week before all of this, my legs decided to take a personal day. Three days of “we are not walking far, and we are not apologizing for it.” I worked from home. I didn’t fight it. I didn’t have the energy to fight it, which is its own kind of exhaustion. The fight left me. And when the fight goes out of you, not because you’ve given up, but because you’ve spent it all keeping everyone else’s world turning.
Because that’s what I do. People bring me their woes, and I receive them. I hold them. I help. And then, occasionally, someone asks how I’m doing and before I can finish the first sentence, my woe gets compared to someone else’s woe and quietly escorted off the premises.
I am tired of fighting this. Not life — this. The condition. The invisibility of it. The performance of being fine. So here’s what’s actually happening.
This explains everything. The bladder freelancing. The legs are staging a walkout (ironic). The 2:45 a.m. autonomic mutiny. The eye that felt like it was auditioning for a medical drama. These aren’t random. They’re chapters in the same story. Different nerves in different parts of my body, all dealing with the same uninvited guest. I’m not losing my mind. I’m losing axons. There’s a difference, and it matters.
I told a friend about this last night. “Wait — if it’s not cancer, why are they treating you with chemo?”
Great question. Pull up a chair.
Inside your body, you have plasma cells. Their job is to produce antibodies — the soldiers who show up when you get a cold. Mine have gone rogue. They’re not cancerous exactly, but they’ve stopped listening to management and they are absolutely freelancing. These unsupervised plasma cells are pumping out kappa free light chains — partial antibodies, basically — like they’re getting paid per unit. Those protein fragments deposit in nerve tissue and eat the axon. The actual signal-carrying fiber. The copper wire, not the rubber insulation.
So when the doctors say “chemo-like treatment,” they mean: we’re not treating the damage. We’re going after the gremlins at the source. Now, is it technically cancer? Here’s the honest spectrum nobody drew on a whiteboard for me:
I live in the middle box. Not cancer. But the address is close enough that the treatment protocol is borrowed from the same neighborhood. The drugs target the plasma cells producing the problem proteins — suppress the source, reduce the light chains, stop the damage.
“So you’re getting chemo?” my friend asked.
Chemo-adjacent. Same drug family. Similar logic. Less paperwork than actual cancer, slightly more existential dread than a vitamin.
“Will the nerves grow back?”
Axons regenerate slowly and incompletely, if at all. The goal is to stop losing more, not to un-lose what’s already gone. Think of it as plugging a leak, not refilling the tank. I’m incurable.
Here’s what I keep coming back to: I’ve been saving the world this whole time. Professionally, relationally, habitually. And my body has been quietly sending distress signals that I’ve been too busy fielding everyone else’s distress signals to answer.
There’s a scene in every Superman movie where he finally gets hit by something that actually hurts him, and the look on his face isn’t pain — it’s surprise. Oh. So that’s what this feels like. That’s me. Standing at 2:45 a.m. in the dark, reaching for clonazepam and ondansetron, and being genuinely surprised that I’m not invincible after all.
So, if you’ve read this far, thank you for seeing it. Not fixing it. Just seeing me.
That’s enough. That’s actually everything.