People often ask what it’s like living with the unknown. Truth told, this morning started exactly where last night left off.
Brain fog.
It’s not romantic. You know, that Hollywood mysterious scene in movies where the protagonist stares pensively out a rain-soaked window and see the person forever adored. No. This is the kind where you open your eyes and your first genuine, unfiltered thought is, “Why the fuck did I wake up?” Then, looking at the ceiling, “What the hell God?”
Not existentially. Just practically. Like your brain filed the paperwork to restart overnight but forgot to ‘cc’ the rest of the body.
“Ok. I’m up. I guess I should do something.”
God never answers me directly. But since the coffee maker programmed, ‘binged,’ I take it as a sign.
Then comes the negotiation with God. Right on schedule, the morning’s greatest hits start playing. Anyone dealing with a long-term illness knows the playlist. Every person carrying something slow and uncertain knows it by heart:
Is today the day everything shorts out? Is today the day they wheel me into some clinic for a lube, oil and filter? Is today the last day I work a full day without a waiting room somewhere claiming the afternoon? Is today the last page of the recent past, just before the future rewrites itself entirely in the language of repeated chemo schedules filled with hematologists and neurologists who want to discuss “next steps” while whispering to bring someone during the next visit.
These aren’t dramatic questions. They don’t arrive with thunder and violins. They arrive quietly, somewhere between the first and second cup of coffee, in the ordinary light of an ordinary morning.
I have something called Kappa Light Chain Deposition Disease with neurological significance. Which is a very impressive collection of words that essentially means: a rogue cancer-like protein in my blood has apparently decided my nerves look exquisitely delicious. It’s not quite full multiple myeloma cancer but is isn’t quite not cancer either. However, you likely will have full myeloma, eventually. The condition is uncurable and one always lay in this ambiguous zone where medicine shrugs elegantly and says, ‘yeah, not today, but maybe tomorrow. Then again, maybe not.’
Basically, this rogue protein is eating my nerves slowly, minute by minute, hour by hour, day by day.
Some days I feel fine. Some days my body feels like it’s been assembled by someone who lost the instructions. And some days the brain fog rolls in so thick I forget what I was saying mid-sen …..
Oh yeah. Right. Blog post. Blog post.
Here’s what I know: full cancer treatment is coming someday. Full chemo-type medication. The real lube, oil and filter. Not sure when. Neither does my doctor, exactly. We’re watching and waiting. Watching sounds peaceful to a clinician, but to the patient, is mostly just worry, “Is this the last day of my old life?”
In the meantime I have a few things that keep me vertical. First, I have a God that I argue with occasionally but trust fundamentally. I also have meditation that I learned from a Buddhist, that somehow coexists peacefully with the Catholicism I grew up with, and the expansive, politically unbothered Christ I believe in. Third, I have a stubbornness that apparently even rogue proteins cannot metabolize.
As I think about it, God’s reply would come in the form of ‘A Word From Management’ memo.
“Look. I gave you a brain. A good one. Yes, it fogs up occasionally. That’s not a defect, that’s a feature. Keeps you humble.
You want to know why you woke up? Because I still have things for you to do. I don’t run an early checkout program. For treatment, ask your hematologist. Oh wait, the last one told you not to come back. See? Even I must work with difficult people.
The neuropathy? I know. I’m not thrilled about it either. But notice something important: you’re still walking. Still working. Still arguing with Me, which frankly I find endearing.
The Buddhist meditation thing? That was My idea. I have a lot of subsidiaries. The Christian right view of Me? We’ll discuss that later. I have notes.
The chemo question: is today the day? I’m not telling you. That’s not me being cruel. That’s me saying today is today. Yesterday was filed. Tomorrow isn’t open yet. You only ever actually have this cup of coffee.
You want a sign? You’re breathing. That’s the sign. That’s always the sign.
Now finish your coffee and start writing. I didn’t give you that voice for it to sit in a drawer.”
So I got up this morning. I’ll probably get up tomorrow. Not because everything feels good. Not because the questions stopped. But because somewhere between “why did I wake up” and “ok God, I guess I should do something” there’s an answer quietly waiting. It just takes the whole day to find it sometimes.